Welcome to Sally Land!

Brennan's Crazy Hat Day

2012-02-12T19:31:00.000-08:00

It was recently Catholic Schools Week at the boys' school. There was a Crazy Tie Day, Special Mass Day, Crazy Hat Day, an Awards Day and Class Colors Day. I'm posting a picture of Brennan with his classmates (he's at bottom center) on Crazy Hat Day.

His hat was straw, with a pink flower garland twisted around, a pinwheel attached at the top, and a rubber ducky on the garland. It was a very fun and creative ensemble!

Brennan is awesome at always having enthusiasm for anything different and/or fun. And fun he had all week!

John Paul's First Concert

2012-02-12T17:16:00.001-08:00

John Paul was invited by a friend to attend his first concert last week. Off he went with two of his buddies, a group of girls, and two adults to the Brad Paisley concert. It was loud, crazy, and allowed him to stay up very late on a school night.And he rocked it! Hope you enjoy the photo and the video. JP is wearing the Tebow jersey, #15, in the video and is the center boy in the photo. He is now a big fan of country music!

A Three Year Anniversay

2012-02-07T16:40:00.000-08:00

Today is the third year since I left Spokane for Seattle. What a day that was. I remember Craig moving the boys' beds over to the Sauberan's, the family with whom they would stay with when Craig was in Seattle with me. Clothes were moved. Special items were moved. They no longer "lived" in our house.

Ultimately we were packed up and ready to head to Seattle. But the kids needed to be moved too. And I had to say goodbye to them, maybe forever. I remember thinking I need to remain stoic and not get too emotional. But how could I, when I feared I might not ever see them, hold them, touch them, smell them ever again?

Words could not attempt to describe the torture I felt. It was simply a heart breaking and that heart was mine.

I decided that it would be best for me to do this at home, and then have Craig take them over. I could not have a long, extended goodbye. And the minutes it took to let them go were the most excruciating of my life. Then they were gone and I was going to leave them behind.

I don't remember what we forgot to move over or what the situation was but as we were leaving Spokane we had to stop by the Sauberan's for something. I was frozen in despair and unable to part with them again. So I stayed in the car while Craig ran up.

I was silent for over an hour, literally unable to speak, fearful that everything inside might come out.I had left my home. I had left John Paul and Brennan. I had left my friends. I was scared about what was ahead and so much unknown. How would we ever pay for it all? There was a lot of snow outside. I didn't know if I would be coming back.

But I am home.

Catching Up

2012-01-15T19:09:00.000-08:00

Once again I find myself with no update, nor ending to the story, nor any posts about what's been going on for awhile. Yet again, I must apologize, especially to those of you who check regularly and have had no new news. I think I committed to this last year, but I promise to post more often.

It has been a very rough road physically since my last excited post about getting new boobs. That is still in progress, with much more to complete. I think my next post will be From New Boobs to Now,and probably include my health update too. But that may be too long to read in one setting, so perhaps it will come in parts. But I promise to write it, and we'll go from there.

Happy New Year!!

Full Circle

2011-11-08T06:29:00.000-08:00

So how does one mark such dates? It comes with sadness and some anger, a true want for "the before". But this Thursday, the anniversary of my diagnosis, I'm getting even. Something remarkable is set for the day. Something meant to be and will start to bring me full circle.

At 10:30 a.m., my surgery will begin. It is the first step towards putting my body back together. I am having my tissue expanders put it. This is the beginning towards replacing my breasts. They will never be identical to what I had before. And yes, in the end, i will essentially have had a boob job. But at last I will begin what was literally planned to occur after my chemo treatment for breast cancer. In fact, my original tissue expander surgery date was on the day that all the tests came back, confirming I had leukemia as well.

Perhaps it is a little odd to be so excited about a surgery. And it is no small task, and should last 3 1/2 to 4 hours. The surgeon essentially cuts from side to side across my chest, cutting through skin and muscle. The expanders are placed behind the muscle and attached to the ribs. The expanders hold a temporary implant that is filled with saline. Ports are placed under the skin on both sides for access.

Over the course of some time, perhaps a few months, more saline will be injected through the ports, slowly expanding the muscle and skin. I will go to the surgeon's office every week or every other week, depending on how it goes and what I can reasonably tolerate, and the temporary implant is gradually filled. Once my body's limit is reached or I am satisfied with the size, I will then "wear" that for about two months, allowing the body to heal itself a bit.

Then there is a second surgery during which the expanders are removed along with the temporary implant. Then silicone implants will be put in place.

So what am I doing Thursday? Getting part of what I have lost back. I am really excited and hopeful for a positive journey through this. Pray for me, please, if that is your thing. I'll take positive thoughts too!

What an incredible way to mark this anniversary of my diagnosis. New boobs!!

Four Year Anniversary

2011-11-07T14:32:00.000-08:00

Tomorrow is the four year anniversary of my final lumpectomy. I remember quite vividly waiting for the results. It was always an uneasy few days waiting to hear what the pathology report held for me.

Four years ago this Thursday, November 10, was a Saturday. Craig was off at a friend's house with the boys. The phone rang at about 10:00 a.m., the caller id showing the name of the clinic where my surgeon practiced. I remember knowing that as I reached out my hand to answer the phone that my life would never be the same again. I considered not answering, as if doing so would prevent cancer. But when your surgeon calls you two days after a surgery, on a Saturday morning, you know there is a problem.

He was very cautious and caring with his words. But the bottom line was the same. Cancer cells, a tumor, had been found. I had cancer.

So it may seem strange to you that I keep track of these anniversaries. But each day/event was a "before and after" moment. There is before cancer and after cancer. It delineates what was versus what is. It dictates much of who I am today.

Cancer sucks.

Remembering Kathy

2011-10-27T16:03:00.000-07:00

Today has been incredibly hectic, not unlike the last few. But as I stress over this or that, hurry here or there, set alarms as reminders, and do all the other things that have made up my crazy day, my mind and heart are never far from the memory of my friend Kathy.

Today is the anniversary of Kathy's bone marrow transplant. Hers never grafted and she was sent home to die. In three weeks, she was gone.

Sometimes I forget how lucky I really am. I become absorbed with the details of my life and fail to see the big picture. That I have cheated death. That I live when many don't. I made it through, no matter how difficult it has been and continues to be. Kathy is a good example of a good person who had something really bad happen to them. She should be here too.

When I met Kathy, she was diagnosed with leukemia the next week. Her search for a donor was very complicated and finally a less than perfect match was selected. We fundraised when her insurance money for donor search was depleted. She left for Seattle within two months of meeting her. The third month she was transplanted. The fourth month she waited. The fifth month she knew it had failed. The sixth month she was gone.

What an impact she made on me, even long before I knew of my own leukemia. I had never even heard of a stem cell transplant until she needed one. I watched her be incredibly brave, strong, and selfless. I watched her hope, dream, and accept. She went before me before I knew I would go there. But never have I had the grace that Kathy had.

Thanks, Kathy. I miss you.

My Donor Wants to Know Me

2011-10-22T11:47:00.000-07:00

Last March 6 marked the second anniversary of my bone marrow transplant. In addition to being a reason to celebrate being alive, it also meant that my donor and I could seek out information on the other. If the donor is in the United States, contact is allowed at the one year anniversary point. Because my donor is in Germany, international donors must wait two years.

So right on the date I received a letter from the Unrelated Donor Coordinator at Seattle Cancer Care that my donor had requested my information. That was pretty cool. Not only that he hadn't forgotten, but that it was he who took the initiative and clearly was anxious to do so. Well, as excited and flattered as I was, the letter (simply requiring my authorization to release my information to him) has been sitting in a special place ever since.

I finally completed the form, which includes things like address, phone number, age, and marital status and mailed it back to the Coordinator. From there I really don't know what happens, other than that my information goes back to my now twenty year old donor.

I am nervous, for so many reasons. What if he wanted to save a child's life? What if he is insulted I waited so long to return the form? What if he thinks I am 100% better? Will he be hurt I didn't seek him out? What if the truth isn't the fantasy he went through the donation process for? I am so very worried he will be disappointed.

Another wait and see.

Fire Safety, Part II

2011-10-20T14:36:00.000-07:00

Many of you may remember when John Paul, the microwave, and a Cup O'Noodles had an encounter, shortly after his first grade class had studied Fire Safety. If you remember it, you are probably laughing, or at least smiling, at the memory. Well, Brennan is now in first grade, and just finished his Fire Safety unit......

The picture simply doesn't do justice to the black right eye and the gouge next to it. Suffice it to say that when one practices "Stop, Drop and Roll", including the new instructions to use one's hands to cover the eyes, nose, and mouth to avoid smoke inhalation and irritation,that one cannot see where one is rolling. Ouch.

Both my boys have done me proud with their emergency preparedness. And I am tickled to have two "Stop, Drop, and Roll" memories and stories to tell.

John Paul was just jealous of my taking Brennan's picture and insisted that I take a silly one of him too.

I hope this made you smile.

Fall Sports

2011-10-17T14:17:00.000-07:00

I seem to forget how busy Fall can be. Back to school and nightly homework are the basics. Then add on the boys' sports, and it is insane! Both John Paul and Brennan are playing soccer and flag football. Between them there is at least one practice every day after school and there are at least three games on Saturdays. Inevitably one game is at the same time as the other sport's game and simply can't be played.

It definitely takes two parents and two taxis to get everyone where they need to be. During the week Craig handles John Paul's soccer practices as he is also their coach. The rest are up to me and it is exhausting, even if I felt well. Saturdays are a bit manic but it always gets done.

Here is a picture from John Paul's football team's pose for the photographer doing the formal pictures. (Yes, it's a bit of a cheat. But we ordered pics too.)He is third from the left on the bottom row.

It remains to be seen which child will continue in which sport(s). But I remain amazed at how serious it all gets, even at the six and eight year old levels. Brennan seems to be the more aggresive on the field, really without any fear for what comes next.... John Paul is a good support player, assisting in plays but keeping away from direct conflict. Huh, sounds like their personalities off the field too!

Still In Remission!

2011-10-14T12:27:00.000-07:00

I recently completed a number of oncology lab tests and I continue to dodge the proverbial bullet! The test that looks for the presence of the Philadelphia chromosone, the "marker" for the type of leukemia I had, came back with the prayed for "NONE DETECTED". Hooray!

I survived another week of waiting for the test results. And I made it another three months of waiting between repeating the lab test. Oh happy day!

Immunology: One Step Forward, Two Steps Back

2011-10-13T10:56:00.000-07:00

Previously I blogged about the good news I received from my CD4 test, which measures your T-cell count, which is basically the strength of your immune system. I finally had moved up and out, if you will, from being the equivalent of having AIDS. My number had risen enough that while I was still nowhere near the normal range, I at least did not have the same threat level.

Unfortunately, I have lost half my gain, and am now just a bit above the critical 200mark, at 243. Obviously this was not good news but most important is to learn whether I am trending down or if it was just a one-time loss or perhaps even a fluke. So I repeat the CD4 next week and I am nervous, to say the least, for the results.

My immune system is monitored by an Infectious Disease doctor. He determines what preventative medications I require and how to treat infections, be it bacterial, fungal, or viral, as they arise. When your immune system is compromised, it is so much easier to acquire an infection, thus all the effort to isolate from those that may be contagious. In an immunocompromised patient, the body simply can't fight the infection on its own. Sometimes the infection can even be life-threatening.

Although rather benign on the severity scale, but awful to battle anyways, are the thrush and C diff recurring infections that I have had. I would just assume not have either ever again, but the Infectious Didease doctor designs a plan to both prevent and treat. So it is somehwat routine now, albeit unpleasant.

I hope my layperson explanation of what all these immune sytem topics are and mean has helped answer some of the questions I regularly get. I'll keep you posted when I get my new test results. Pray for no downward trend!

Back to School

2011-10-11T12:57:00.000-07:00

Yes, we did send the boys back to school this Fall..... On August 31, Brennan started the first grade and John Paul began the third. It was incredible to be healthy and to enjoy the traditional back to school moments. Here are some snaps from the yard and the car, heading to school. There is also one of both boys wanting us to leave already!

Our family is blessed that the boys have returned to All Saints for another year. The support from the school and the school community have carried us through many days. Quite literally, we wouldn't have made it through without them. I am also fortunate to have been "adopted" as a project by several parent friends who simply won't let me give up.

Today we are about six weeks into the school year and the boys have settled back into the school routine and are doing well. They are also both playing soccer and flag football. Our after school hours are filled with homework and various sport practices. A little family time finishes the evening just as it is bedtime. Saturdays are spent going from one game to another. I am relishing the routine, the mundane, and the simple continuity that I mostly can participate in. It is what I have been waiting for.

We are proud of both boys and are pleased to know that they are each doing their personal best.

Good Luck?

2011-08-15T16:00:00.000-07:00

As many of you know, I seem to have bad luck. Not that there is a cloud over me, but what can go wrong, often goes wrong. This fact has also been the source of great amusement to many of you, and me, because it just doesn't seem possible. But let me tell you: it is.....

So, I am on a run of good luck and that is pretty damn exciting! Because I am unused to having it, I find the it a startling and fun trend!

Here are a few highlights of cool things that have happened: 1. Up in the middle of the night, I wrote in, for the very first time, to a question posed to the viewers on CNN. And they put my comment on tv, noting "Sally, who is up early in Spokane, Washington...." Cool! 2. I actually won a gift card in the Albertsons' (a grocery store chain) monopoly-type game. Who actually ever wins on those? 3. Some of my weekly labs are trending up. (Some aren't.) But this is a first. 4. I was invited to go to Vegas for a few days with some friends. The dates had already been selected. And they coincide with dates I was there three years ago when I ran away after being diagnosed and told I would die. I leave Saturday for a little in-your-face trip.

Now, if I get lucky in Vegas, I will really have to start thinking about these new coincidences! But good things and surprises are always fun. I like it. I need it!

Good News! (Yes, REALLY!!)

2011-08-15T13:44:00.000-07:00

It has occurred to me that the main reason I get anxious before certain doctor appointments is not because of what might happen to me there but rather what I might hear there. My Good News column is pretty sparse. My Status Quo and Not So Good News is a little heavier.

However, the seas parted and the light shone on me recently! My Infectious Disease doctor (Follows my immune system and vulnerability, gave me the AIDS analogy) called with awesome news: My immune system numbers have gone up! It's not something that one can control or do something or anything to boost, the numbers just are what they are. My new number is 439. Can you believe it??!! From 39 to 439! Holy cow!!I no longer have to worry about dying if the person next to me sneezes!

439 is a great improvement. He cautioned that what goes up can come back down, and that number is a measure of that day only. I am still a far way from the low end of normal andmy AIDS analogy has me as HIV+. Yet this is a huge shift. And I will take it! Take it and run!

Time Off

2011-08-03T01:01:00.000-07:00

Knowing I would have my Mom and my Godmother Denise here this week, I limited doctor appointments, tests, procedures, related calls, and all other things medical to the extent possible. Alas, even with that effort, there are and will be a little spill into the visit. A couple calls to my cell from one doctor, an ultrasound, an MRI, a minor procedure...... You get the picture. This leads me to the main point of: How do I get a vacation from my body?

The answer to this question has been alluding me for a while. We all try to get little get-aways from our lives now and then. A weekend, an evening, a trip, company here for us, and so forth. I wish I could just step out of my body, leaving all its issues and problems behind and get away from myself. How do you do that? I mean this question in the most literal of senses. I want time off from being a professional patient and cancer survivor!

The Boys Are Back!

2011-08-03T00:46:00.000-07:00

At a little past eleven o'clock last night, our boys, Brennan and John Paul, came down the ramp and back to us after flying home from Denver. They left last Wednesday to visit my step-sister and her family in Castle Rock, CO. And what a trip they had!

I will have to write more, and include pictures, when they are with me so I can turn their hyper excitement of tales and adventures into words. Let's just say that their Aunt Jackie and their cousins Adam (18), and Erin (16), and Ali (16) are the most awesome people ever!!! They went to games (sports), movies, putt-putt, cool and delicious restaurants that we now must open here, and visited their cousins at their summer jobs, and, and, and, and! Two very happy boys lucky enough to have such a generous and cool Aunt, and three cousins who have tons of energy to keep them entertained to the hilt.

My sister and I had not always had a full relationship. We never lived in the same home so really don't have that shared memories history. But as I often find out, it seems, that once you grow up, marry, and have children, there are suddenly a lot more things in common and to fuel the development of a new relationship. So in addition to gaining that, we have found that these cousins will only be close if we create the opportunities for that. And here Jackie's generosity has made this both possible and happen. Thank you, Jackie! Couldn't and wouldn't have happened without you.

Today they slept in until 10:30 which normally never happens. They are spent from fun! And the excitement continued today as my Mom and my Godmother Denise arrived this afternoon for a visit. Spoiled and blessed!!!

Posting Decisions

2011-07-24T02:34:00.000-07:00

Once again, I am up far too late. The reasons are many tonight. Most of which I will write about soon, but no panic is necessary. Confusion and mulling mostly. It is a fine and difficult line deciding whether one should write about other people. Will it mean something to them for posting about them? Or invade their privacy instead?

So while I sort out that conundrum, I also need to write again soon, rather than leaving things with that elephant. Thank you to those who reached out to me in concern, and sometimes in sadness. Life is difficult, but when the difficult is presented so bluntly, it seems helpful to quickly move on to a new topic which isn't so raw. Do you know what I mean?

My Medical Status- The Elephant in the Room

2011-07-11T02:01:00.000-07:00

It's late, I am tired, and I need sleep to come. So while I wait for heavy eyes, I thought I would address the Elephant in the Room: what exactly is going on with my medical status at this point. And while I could go on and on with other details, which I may do another time. But the main and overriding issue remains my immune system. It still has not reconstituted properly. My T-cell count is very low. This translates to "not good".

Here is an analogy. It COMPARES my immune system to a person with AIDS. I DO NOT HAVE AIDS. This is just how my Infectious Disease doctor has explained it to me. (I see him because of multiple chronic problems, NOT AIDS, that I deal with.

A person is considered to be HIV positive until their T-cell count drops to 200. At that cut-off they are now considered to have AIDS (rather than being HIV+). It is at 200 or below that a person with AIDS starts to experience many opportunistic diseases, syndroms, and conditions. Hospitalizations become frequent for most patients as their immune system is so compromised that it can't fight any of the medical problems that person has.

When the T-cell count goes down to 100, at this point the person is considered end-stage. The body simply is overtaken by various ilnesses and diseases. It's time to make final preparations and Hospice is often called in. There is little hope other than a miracle.

My T-cell count is 39.

I am scared of even the common cold. I worry someone will walk past me who has chickenpox. I isolate so I am exposed to as few opportunistic problems as possible. I am not allowed in my children's school because of the many germs naturally found at primary school. Every hospital visit I worry if I picked something up while I was there.

It has been over two years of this and it gets very old. I live but watch everyone else around me as they are living. There is a big difference.

I recognize that all of this information may shock you. But it's the truth, it's the explanation many have wanted, and it's my reality.

A Red Letter Day!

2011-07-10T08:25:00.001-07:00

Okay, so the next sentence may not fit today's post title.

Yesterday I had surgery. Just outpatient but surgery nonetheless. No one gets really excited about surgery. But there I was, bouncing through the door and swaggering about. Why the strange behavior? I GOT MY FEEDING TUBE OUT!!!!

Yes, finally, I am now a one tube woman (PICC line). And a happy woman I am! A few things brought this about, both good and not so good. But it is out! The pictures here show what it looks like right after it was put in last February (What tube number was that?!) and the other shows what a PEG tube (feeding tube in the stomach) looks like. When I saw it, it looks so simple and non-threatening. Yet it amazes me at all it can do.

The good part is that my doctors actually let me get it out. I had gotten to the point (the not so good stuff coming up) that I had asked a few weeks ago about getting it out. The response was to wait a few more weeks, and if I maintained my weight gain AND if my lab values continued to improve that we could discuss it again.

To detail the good, 1. I have gained some weight and maintained it. AND 2. My lab values have been improving. I feel like I have fought for every ounce I have gained and it feels kind of weird on my body, but it's there. Tube feedings, either continuous or by bolus, started that out. Bolus feedings then became my preferred because it meant less time hooked up to a machine. I ended up with a disorder called "refeeding syndrome" where your body kind of freaks out from getting nutrition after starving for so long. That lead to weekly sessions with the Refeeding Specialist at the hospital. Through snacking and small meals, I worked up to the commitment of one meal a day, plus snacks. I also made a huge change in my life and gave up Diet Coke. Oh, we were such good friends..... Now it's no diet drinks but I do drink alot of 7-UP, approved by my Refeeding Specialist. This actually helps toward hydration while giving me calories. 7-UP is my bridge for what additional food calories I need until I get there.

The other good part is that while my Home Nurse is here twice a week, he draws labs. They detail an incredible amount of information, including nutritional status. There are actually labs that tell what level of starvation and nutritional depletion a person is in! So no matter what you might be tempted to report, they know the truth about what's going in. And those values have made an extremely slow, it seems, improvement.

Anyways, I had the evidence that I was working the program and doing better and when I finally asked out of desperation to get the tube out, I got a yes!!!!!!! And who wants a tube hanging out of their stomach anyways?

If you are happy enough with the above, you can skip the below. Why mess with a high point? But here are the reasons I wanted it out NOW.

I had been suffering from some significant pain because of the tube. I even went to the hospital for it. The theories are that 1. It takes up a lot of space inside a small stomach organ to begin with. Then you add the 50+ pills a day. Not so much room for food. 2. My stomach wasn't real fond of it and it spasmed a lot, which really hurt. 3. It was located near the bend in the intestine where it is common to have problems especially when you have motility problems as I do, for "things" to move further along. So it ended up being counterproductive to my eating needs because I knew the spasms and pain would only get worse. So last week after a couple of days in bed because of the pain, and not wanting to gasp or cry or otherwise show my pain to my children, it was just enough. I called, explained it was time, two doctors approved my request and the next day it was out. Hooray! Happy day!

Another Restless Night

2011-06-27T04:55:00.000-07:00

It's been a long night. I supposed there are several reasons. Most of all, I think that I've had a pretty good run of energy and have overused that surprise. I must admit that it is my typical pattern. If I feel "good", sadly I know it won't last forever, and I use it to the max. There is so much to do but even more going on. And I want to as big of a part of life as I can.

As I mentioned in my last post, it's been very busy around here. And more than anything, I want to reconnect with my family. As in, be a family of four rather than three. And the joy I get seeing my children's eyes light up when I can say, yes, I am coming to your game, or yes, we can make that play date happen, etc., is perhaps the best cure for my soul. And to be able to be helpful to my family, as a wife and a mother, is thrilling. It really is both the little and big pictures that have suffered. I think that is part of what people understand the least. For me to have the energy to make dinner is such a rarity that the pleasure in doing so and the satisfaction in doing so is incredible. A little funny, isn't it, when I used to think of it as another thing that just must be done!

So I am feeling very spent and needing lots of extra rest now. But I am now just a little more optimistic that the pendulum will swing back again and I will be have better energy again. If I could only train myself not to squeeze the energy dry......

But in all of this have been more fun and exciting events, which I will be writing about soon, hopefully this week. Nothing earth shattering but here is an example and perhaps a little bit of why I am only sleeping in two hour stretches: Craig and I took both the boys to camp yesterday. Through the grace and generosity of the YMCA, John Paul and Brennan are off to Camp Reed. It is a wonderful and fun-filled sleep-away camp, about a half an hour north of Spokane. It may not seem far, but it is like a different world for them, in the forest on the edge of Fan Lake.

This is Brennan's first year there and he is attending Mini-Camp. It's for the littler kids who are ready for a trial run. He stays from Sunday to Tuesday evening. Without much ado, he was off goofing around with his bunk mates, five of six already there he knows from school! It really wasn't until time to say goodbye that I saw a glimpse of worry in his eyes. He came back out of his bunk room twice after we had said goodbye, just needing an extra love and an extra assurance that he would have SO much fun. But I superstitiously have wondered if each time I have woken up that he has too!

John Paul, as hard as it is to believe, will be gone until next Saturday. The older kids bunk in cabins, a bit of a ways away from the main building, where the littler guys stay. He was ready for us to leave before we even got to the cabin to get him settled in. I even had to tell him that the rules include giving the Moms a kiss and a hug before I could leave...... He, too, was immediately at home with four of his buddies from school in his cabin having already arrived. When we left, two other boys had joined, who I worry may experience a block in bonding with these four. Friends to the end, they say!

Walking back towards the main building and then to the car, it hit me that both my boys are growing up. Fast. No tears, just a lump in my throat. When did this happen? Well, much of it has happened since 2007 when I first got cancer. These years are very sketchy in my memory, which deeply saddens me. But here we are, with an incoming first grader and third grader. It seems like yesterday that B was still a toddler. As if life fragmented when I got sick. This is part of the sadness and regret I frequently feel.

On the way home we stopped at the baby shower thrown for our neighbors' daughter. It was beautiful and wonderful and pulled at that sadness that was creeping up on me. Our departure was quickened when I ate some of the delicious catered buffet. Fortunately the shower was in a park and there was a big pillar to get sick behind. Hopefully it was unnoticed. But nonetheless embarrassing and rude. I kind of knew then that my good phase was turning. I really do wish I did not ever have to eat because I would feel A LOT better all the time.

The backdrop of the entire day was Craig's and my 12th wedding anniversary. It seems impossible that twelve years have passed since the best party I've ever been too. I often think of our traditional wedding vows, about "in sickness and in health" and recognize that as we stood there before God and our loved ones, we were so oblivious of what that meant and what was to come. Statistically, we should no longer be married, according to the transplant people. Sadly, the events and changes and never-ending issues typically squash the bonds of marriage. But we've made it!

Although it will be difficult to write, someday I do want to describe how all of this affects a marriage. But only after I can go back and tell you some of the many happy and wonderful events that have happened over the last weeks. And there have been other remarkable times that with the aide of pictures and calendars I want to reach back in time and share. It will also be much more fun to read!

To Brennan and John Paul: please tell me you missed me even just a little bit while you were at Camp. And have fun!

To Craig: Happy Anniversary! Thank you for beating the odds with me. I love you.

School's Out!

2011-06-23T04:35:00.000-07:00

Hello again. It has been an insanely busy few weeks in The Robertson Household. And the good news is that a lot of it was happy and exciting. The better news is that I was able to participate in much of it. Hooray! Progress! And if it was just good luck, I'll still take it.

The school year wound up on June 15. On that day, the entire school and many parents/families attend Mass. It is a nice way to close out the year. And to celebrate school release, I found myself at Chuck E. Cheese with a couple of other families. While I will never choose CEC on date night, eleven a.m. on a weekday is a great time to go. The boys had a blast (they chose CEC over going to the latest Pirates of the Caribbean movie). I, too, enjoyed visiting with two Mom's who have always been there for me. It is always fun to hang out with cool chicks!

Skipping forward a bit, the boys' report cards arrived yesterday. We are very, very proud parents. They continue to amaze me how they balance it all. Can you feel how full my heart is for them? Yet another blessing.

And speaking of, the end of the school year wrapped up the Michele and Lisa Taxi Service. Blessed yet again to have incredible support, Michele and Lisa took turns taking the boys to school and bringing them home. This way we all new that they were safe. The irony was here I was receiving this great gift while being envious. I want to do the "Mom" things. It may sound strange to you but I missed that special time in the car, the "Mom" time. Nevertheless, I received yet another gift and am starting to think I have some guardian angels.....

Ultimately......Hooray!! School's out and summer is here!!

New Life

2011-06-07T00:35:00.000-07:00

Well, it's early on June 7 and my sister-in-law is due tomorrow with her first baby. It is so wonderful to anticipate new life. A nephew is coming!!

It has also been an interesting time to answer the curious questions of how all this baby stuff happens from my boys. I have to admit it's a little fun when we answer their questions, as mildly as we can get away with, and then to watch the scrunched up faces and hear "YUCK!!".

Okay Angie, I'm voting Saturday. See what you can do with that........

And thank you for reminding me the glory and gift of life. What a wonderful miracle it is!

The Shift

2011-06-07T00:18:00.000-07:00

Well that "I'm feeling pretty damn good!" period has passed again. I get them occassionally and I cherish each moment of semi-normalcy. I also try to cram everything that hasn't been done, loving on my family, accepting as many invitations as possible to catch up with friends and make new ones, wear something other than sweats, run all those errands that build up, and try to do something with this house. And then there is the PILES and BAGS of stuff to catch up on. Ugh.....they are the bane of my existence.

It's pretty exciting to feel decent. It's almost a high. But as much as I am sure I am "better", there is a finite period of time involved. And this one has passed again. I cry each and every time it changes and I burrow in my hole and wonder why. I mean, I know why, this is just how it goes post-transplant. And my manic activity when I feel decent probably does not help the longevity. But it's like the whole world shifts and I am back in it.

So when it goes, I just hope and pray it will not be too long before it's back.

"IF YOU CAN HELP ANYBODY EVEN A LITTLE, BE GLAD; UP THE STEPS OF USEFULNESS AND KINDNESS, GOD WILL LEAD YOU IN TO HAPPINESS AND FRIENDSHIP." I have borrowed this from the All Saints Newsletter. I feel this deep in my soul. This is who I want to be and the kind of people I have been incredibly blesed with. Lord, please give me the patience I need. Please give me a life back.

This post was a little here and there. But it's what's on my mind tonight.

Love and blessings to each of you.

Of Course, When I Am Ready

2011-05-30T06:19:00.000-07:00

Well, here I am, all ready to start writing and spilling it all, and something is wrong with my computer. So I do have some blog posts to post, but can't. This machine has been good to me but maybe it is nearing its final days. Now I am laughing outloud because that is almost how I would describe myself!! Anyways, I'll bring my baby to the dr. today and see what can be done. The good news, I guess, is that it is letting me write and save in draft, ready to publish when she is all fixed up. See, I may just maintain my goal yet!

They Really Were Serious

2011-05-28T16:45:00.000-07:00

As many of you may recall, Craig and I, as well as my other caregivers who were with me during my transplant stay in Seattle, found great humor, irony, and perhaps a extreme version of many of the Hutch-isms we heard. There were a million things that a transplantee must watch out for, or face a range in a spectrum of dire consequences.

The first time or two of a new Hutch-ism, it's usually a little funny. Or eye-rolling provoking. Or if nothing else, one wonders how these legends and lores began and how they have grown through time. And believe me, there are some good ones. But with time, as scary as it was and is, you realize "They really were serious.". Some of this hits you while you are still there and some are only now really hitting home. But, needless to reiterate, they really were serious.

Looking back, I recognize now that nobody told you that you were going to go on and have a great life. Or a good one. There was a lot of preparation for "the new normal". Well, "normal" is rather subjective. And looking back, it was never the good "new normal" or when this would occur. I think by then the damage was done, so to speak. It was too late. As a patient I had already chosen to have the transplant. It did seem a much better choice than dying and certainly a better choice than not trying to not die.

I wonder now. I know I would not do it again. Would I still have chosen to try if I knew then what I know now? I think you probably know my answer. Every single damn day enforces that they really were serious. This is ugly business, with the hopeful outcome being not dying right away from either cancer or the transplant. If one is successful at overcoming these two significant events, the truth is, there is no normal. You are supposed to be utterly ecstatic to wake up each morning.

I have decided to start writing some truths, some of the things that have held me down and squished me under a proverbial thumb. As always, I feel guilt when I don't post, write, phone, email, text, etc., with "happy", but I haven't had "happy" for a really long time. Read it. Leave it. Think I am ungrateful to be alive. I am going to write it (how many times have I promised that?) and you can take it or leave it. But it's time, and my soul needs the unburden. The truth is always hardest, isn't it?

A Belated Happy New Year's

2011-01-17T07:20:00.000-08:00

Wow, what an inspiring post I left you with on New Year's Eve..... I do forget that others have much more normal and fun-filled lives than I. And that others actually sleep during normal sleep hours. So let me start by first wishing you all A Happy New Year, with my most sincere wishes for strength and improvement for all who are struggling, with anything in their lives, and a cheers to all who are enjoying more good days than bad. This balance, as we all know, is tough to achieve. But I have watched many of you work your rears off to see a better 2011. Let's hope the same can and will be said for us all.

I should also include in this first 2011 post some apology,as usual, in my lack and difficulty in communication. I have forgotten my phone (Freudian?) on several hospital stays. Then that phone gave up the ghost. My number and service was transferred before I retrieved texts and emails. And I have continued my bursts of emails followed by weeks of silence.

Our home phone essentially provides a place for the bill collectors to leave messages. And for a way for 911 to find us if one of the boys had to call and couldn't give directions. So this leaves rather few ways to reach us.

Now might be a good time for me to create the closest thing to a New Year's Resolution that I choose to make. I will set up the voicemail on my new phone. I will check messages and respond to texts. I will check email at least once a week. Forget the home phone.

I do promise to be more honest and more truthful. This may be more painful in many ways but in the end more preferable to sculpting half truths and lies. Thank you to those of you who have praised this choice. I have enjoyed hearing from you and your opinions. I need this freedom. And after all, you don't have to listen or read if you don't want to.

It's New Year's in Sally Land!

In the Middle of the Night

2010-12-31T04:41:00.000-08:00

I am up again, as usual. After a couple of hours of being the only one awake in a relatively small home, I get a little stir crazy. Alas, this is reduced by the fact that I am up because I am sick. This would be a good place to stop reading if you don't want to know the details. For days my diarhea has gotten progressively worse, culminating in the perhaps the most degrading part of my illness: having diarhea in my sleeep in my bed. This, is turn, results in the return to wearing Depends. From a vanity standpoint, it doesn't get much worse.

I often don't sleep at night, for a variety of reasons. But the profuse diarhea leads to the desire to take a bath. This seems strange to my kids, who occasionally come in with their eyes protected with their arms to ask me what I am doing taking a bath in the middle of the night. Other than that, it is one of the most lonely feelings in the world.

I feel horrible, but why wake anyone up? This is the what number of night I have done this? I often wonder if I should go ahead to the hospital and get this party started. I am sure that if you have had experience with some sort of ailment that you knew would end up with that ER visit, unless copious amounts of blood are involved, an evaluation of what day of the week it is, what time it is, how many drunks and prisoners are likely to be there, when the the ER docs change shifts, and so on is a necessary consideration. It is really an art to decide when it is best to go. And with enough experience with all this sickness, I have also learned what can wait to morning and be accomplished in an office visit versus what they are likely to send me to the hospital anyways.

Sometimes it is best to go in the middle of the night because there is a chance I may be back before the boys wake up. However, who am I kidding. I would most likely end up staying as guest. But even this can be less disruptive if I go in the night, when Craig has the day off. It saves half the drama from Craig and the kids.

I sit here, so damn angry at my damn body for failing me. No matter what I do, I inch further and further way from "healthy and normal" to a place I don't want to go. I am not ready.

It is a long and lonely night, again. My tears are mixed with pain and feeling sick and an overwhelming frustration that this is now my life.

Resolutions, The Truth, and Everything Inbetween

2010-12-28T07:16:00.000-08:00

Ah, as the year ends and another year's beginning looms quickly ahead, naturally it is a time that many of us take stock, make our positives vs. negatives lists, and stamp out our New Year's Resolutions. And if not quite such a formal title, we tend to think about what we can do better, do more or less of, and hopefully, generally, what we can do to improve our lives.

My list is both very long and very short. Like banging my head against the wall, I swear to blog more, return calls more promptly or even just return them period, answer my mail, and be more open with others. I could add a plethera of other things, particularly to be a better wife, mother, daughter, cousin, friend, volunteer, and activisit. However, my "wish list" versus my "reality" are at great conflict.

This brings me to my short list. My main New Year's Resolution is to live. My back-up main Resolution is to be honest about it all, from boring health info to fun things going on with family.

I have been a liar. I have avoided truths. I have elected to dodge questions, answering the one I want rather than the one being asked. Please continue to ask me, so that I can now really answer you. I give you the permission that is somehow needed to pin me against the wall....

I am going to work on listening more. Listening, hearing, then responding and doing.

It amazes me that I am quite often told that my blog is still "followed" or checked every day. Perhaps you knew I had more to say and were just waiting.

In return, I ask you to allow me to experience whatever emotion I am feeling. I ask you to let me go at my own pace. I ask you to hold me to the truth, but perhaps not too close to the fire.

If you choose to visit Sally Land regularly in 2011, it may not be as easy and you may not like what you read, perceive, and hear. But really, what is the point of all this, if not to be honest. It has been much easier to lie when hiding behind the wall of a blog. Most of you know I am a terrible liar, my eyes dart around, I start to sweat and figit, and ultimately end up telling on myself because I just can't stand it. Have you felt me squirm on an occassion or two?

While I certainly intend to not remain so cryptic, and to get to the real stuff, I would like to wrap up this post by saying what I have heard from alot of you: My best is not good enough. There. You are right. Does that feel better to hear me admit that, to accept responsibility for things that didn't happen, or that I was late getting done, or the calls I didn't make? Here's the deal: I HAVE DONE THE BEST I COULD. And I have finally accepted that my new "best" is simply not enough in many relationships. I can accept that it is primarily me that has changed. And I have cried endless tears as bits and pieces of my body have been literally stripped off and thrown away, and my once intelligent mind now requires my eight year old son to help me count my change at the store. That golden memory that you teased me mercifully for is gone. I write so many things down so that I won't forget them that I end up with piles of notes.

I had thought that with time I would have my old life back. I was wrong. I am a physical shell of who I used to be. I am not "well" and feel like the bloodhound chasing the hare, but it's really just for show.

Today is the first day of the rest of my life. As it is yours as well. We all need to choose what we do with those days. It is days, after all, that we celebrate with that frequent sentiment. Sometimes there are not weeks, months, and years. And sometimes if there were, they would not be living, really, One can exist without living, most certainly.

Today Craig and I meet with the newest member of my healthcare team (Please note that we had to stop watching the tv show House a year or so ago because I have had everything that goes wronmg with their patients). My new doctor is apparently Spokane's expert on auto-immune disorders. He is going to review for us the battery of tests and results and likely provide a number of potential scenarios for treatment or lack there of. There is an inherent conflict here for my body, which I will go into a little later. But I am sure you get the big picture that if I don't really have an immune system anymore, due to a lack of "reconstitution", I am in trouble.

So maybe in a few hours I will get terrific news and blog all about wonderful things like guilded butterflies and snowmen. Maybe it will take some time to be able to face my children. Maybe I will never blog again. But I told the truth.

At Last, His Own Broken Bone

2010-12-18T03:42:00.000-08:00

I would be amisss to not share the "physical tragedy" that John Paul suffered this Fall. I think the included pictures will well communicate the level of sympathy required. You'll be happy to know that his broken finger healed well and quickly. However, his x-ray copy was an excellent prop for all to see.

Brennan and the Bathroom

2010-12-18T03:20:00.000-08:00

Hey, why not start my hopeful blogging spree/update with something funny?

My beautiful 5 1/2 year old recently used the bathroom. He had been a little constipated so his success was a relief, frankly for all of us. Yet he is screaming for me before the toilet had been flushed and before he could even get the door open. I was once again needed to view his efforts. But with tears in his eyes he told me that something was very wrong.

With a little irritation, I looked at the contents of the toilet bowl, as he pointed to a box type match stick. I had apparently lit some bathroom candle for use during a bath and had forgotten to flush it down. So my poor baby thought that his body had produced this...... While trying not to laugh, I explained that it had not come from his body but from me lighting candles.

Lesson learned.

November: Pancreatic Cancer Awareness Month

2010-11-27T08:58:00.000-08:00

In October, I wrote about October being the Breast Cancer Awareness Month. Perhaps a little preachy, but things that I felt I must say. The irony of being diagnosed with breast cancer in October 2007 and then undergoing a double mastectomy in October of 2007 is not lost on me. And my dear Twigs friends had to list listen to a little, but also had the rare opportunity to reach in a pink bag to feel what a prosthetic breast feels like. I am usually bold and out there, but so many of these diseases are so hushed. Take care of yourself or you can have what's in the pink bag.

At last, to the point. November is Pancreatic Cancer Awareness Month. I imagine that very few even know where their pancreas is or what it does. No matter..... but you have to have one to live. This cancer is often diagnosed after the disease has progressed to the extent that no "traditional medical options" are available. The symptoms can be vague, easily thought to be some other ailment, so many other diagnosis may be given before the inevitable Big C diagnosis is made. Detected very early, like many cancers, there is a high cure rate if diagnosed early. Otherwise, it is highly lethal, with not much time between diagnosis and death. And much of that time is extremely unpleasant. (Disclaimer: Be careful what sites you check out. It's always best to stick with major clinics or hospitals and avoid Uncle Joe's)

Not much time typically passes from a progressed pancreatic cancer diagnosis to death. Even those final days, however many there are, may completely rob the person (who is being called a patient now because they no longer are a person) of energy, mobility, controlled pain. We are not talking a very lengthy period. Sometimes it is days, or weeks, or a few months. But from what I understand, the desire to "be done" can come pretty quickly.

Movies always allow those dying cancer people to look pretty good to the end. To desire visitors and welcome them warmly. No one is crying from pain, vomiting, curled in the fetal position, hoping, praying, that in a few minutes they will feel a bit better, at least enough to acknowledge the visitors. We the living need to go see our dying loved ones. It makes sense. But it can be so incredibly hard on the person being visited. This is the last look, the last words, the last opportunity to heal old wounds or correct any grievances.

And then it is done. The living cry and mourn, the dying keep dying. I have been told that death from pancreatic cancer can be the answer to prayers.

My Aunt Sally, my Mother's sister, courageously fought pancreatic cancer. The time between diagnosis and death was not lengthy. She was able to wrap up a few projects. Her daughter, my cousin Anne, and she looked at old and not-so-old pictures, and she told Anne all about who was there, where there was, and why the pictures still mattered. Scrapbooks and photo albums were made. I think (although I am not totally sure) that I heard a story of a lot of pictures ending up in the recycle bin. Time goes by and we can't remember who it was we were so happily drinking margaritas with in that particular photo.....

My Uncle Hugh, her one and only husband, quickly had renovated their home to allow my Aunt Sally to remain on the main floor and avoid the challenge of the stairs. They were in for a fight! After all, she had survived breast cancer and a double mastectomy, then major reconstruction surgery, so the ups and downs of the cancer race were already familiar. It is those who are distanced by a few degrees of separation that think and say things about a definite death sentence, that a person will never make it, and even take a closer look in the china hutch. The cancer warrior fights until there is no fight left, regardless of how long that may be.

I have lit a candle every day this month in honor of my Aunt, who I was so happily named after. I don't have any way of making sense of any of it. I just know it really sucks. There had been some distance among my Mother and her siblings, so my relationship with my Aunt had not progressed past my teens. But ultimately what matters most is there was love, honor, and respect between the two sisters in April 1970 that I was born as Sally and christened as Sally. What an honor that is. Her dignity in death reminds me that we each get to choose our end. Who will be there, or not. Where it will take place, or not. What needs closure, or not.

In honor of my Aunt Sally, I encourage each of you to Google pancreatic cancer and learn about the early warning signs, risk factors, and what you can do. Most of all, I encourage you to know your body and when something is not "right" get it checked. Take a few hours out of you life each year (yes, you can fit this in) for an annual check-up with your doctor.

Thank you, Aunt Sally, for always doing what you thought was right, for your efforts and accomplishments at home and in the Norman Library System, and for teaching countless others how to fight and how to speak up and say no more fighting. See you soon....................

Happy Apples

2010-11-26T22:30:00.000-08:00

I just want to let the world know that Happy Apples do not make me very happy.

They are the pre-packaged caramel apples that are sold seasonally in the grocery store. The apple is too small and often not crisp. So as a caramel apple connoisseur, Happy's apples are not so happy. It is better to shell out the dollars at Rocky Mountain Chocolate Factory or the summer fair.

Just an FYI!

Happy Thanksgiving

2010-11-26T21:55:00.001-08:00

I hope each and every one of your had a good Thanksgiving, whatever that may have entailed. It is one of those particular days, like Prom, New Year's Eve, etc. where one is expected to have a wonderful memory-making day. There is a lot of pressure for good food, good company, and happy memories. If that is what you were hoping for and got it, I am very happy for you. For those who fell short, I get it. It is not easy to always be "on" or to be cheerful.

I am sure that you tend to call to mind, and remind all the children within hearing distance, that some people have no food to eat. And nowhere to sleep. No family to enjoy.

Our particular community has some tremendous resources. But I always think during grace that there are far too many people out there, everywhere, who are not surrounding a table circled by people they love. It hurts knowing this and I imagine you have all felt this way at Thanksgiving or Christmas.

Another challenge I find in these types of gatherings is that I usually feel alone in a room full of people I care about. While there is no shortage on conversation and kitchen tasks, I have this odd sensation that I am really not there, just my body. Have you ever felt alone in a crowded room? As if you are somehow so different that it sets you apart?

This year we had a great day at our neighbors, the Sauberans. This is the family where the boys have stayed when Craig and I have been in Seattle for medical things. It was a good day. The kids were busy playing, downstairs, thank goodness! The adults were upstairs all working on the dishes each were to contribute. I tried a questionable pumpkin pie and an apple caramel pie, which Misty dropped on the floor as she was putting it in the oven. (Sorry Misty, just had to dig!). I also did some side dishes and chocolate mouse. It was a fun but tiring day. Finally I hit my limit and it was time to go home.

Despite how much I enjoyed the day, and despite the knowledge that I actually made it to and through the holiday, not having to stay at home, I admit I had that sense of loneliness. The house was filled with people I love, people I want to talk to and know better, yet that damn sensation of being alone persisted. I was ashamed that when at dinner we went around the table to say what we each were grateful for and I had nothing to say. I literally had to take a pass. I was unable to articulate my feelings. It is almost impossible for me to describe the vast number of things I am grateful for. And I am unable to this, apparently, with so much I am not grateful for and resent, all at the same time. Realistic but sad. I should have done better, and done better for my children.

I was sent these words of wisdom, written by the late Erma Bombeck. Most of you know it is a very rare day that I forward an email. But I would like to share this, as it reminded me of many simple things to be grateful for, even when one is at a loss of their own personal reasons:

IF I HAD MY LIFE TO LIVE OVER - by Erma Bombeck
(written after she found out she was dying from cancer).

I would have gone to bed when I was sick instead of pretending the earth would go into a holding pattern if I weren't there for the day.

I would have burned the pink candle sculpted like a rose before it melted in storage.

I would have talked less and listened more.

I would have invited friends over to dinner even if the carpet was stained, or the sofa faded.

I would have eaten the popcorn in the 'good' living room and worried much less about the dirt when someone wanted to light a fire in the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have shared more of the responsibility carried by my husband.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have sat on the lawn with my grass stains.

I would have cried and laughed less while watching television and more while watching life.

I would never have bought anything just because it was practical, wouldn't show soil, or was guaranteed to last a lifetime.

Instead of wishing away nine months of pregnancy, I'd have cherished every moment.

When my kids kissed me impetuously, I would never have said, 'Later. Now go get washed up for dinner.' There would have been more 'I love you's' More 'I'm sorry's.'

But mostly, given another shot at life, I would seize every minute.look at it and really see it . live it and never give it back. STOP SWEATING THE SMALL STUFF!

Don't worry about who doesn't like you, who has more, or who's doing what
Instead, let's cherish the relationships we have with those who do love us.

Think about how much time and effort goes in to appearances and doing things right. And boy do I need to work on that one!

In closing, even with our shoulders heavy from burden, uncertain futures, and obstacles that seem unable to overcome, there is always something to be grateful for. It may be little or big, but it's there. Just open your eyes.

Good News Is Better Late Than Never

2010-11-15T08:50:00.000-08:00

Once again, the storm called "life" has thrown me about, to and fro, and I am incredibly late in writing again. While the craziness that often envelopes us I cannot apologize for, as it is almost entirely (okay, maybe some is me....) beyond my control, I DO apologize to the faithful reader, to those of you who still amaze me that you exist, that I left you hanging in regards to the very important doctor appointment that I had been stressing over during my last post. I do promise to be more mindful of this in the future as it is rather unfair for me to lay it out there and then leave you hanging. It really and truly amazes me that people still read this blog, and that people even still care.

Okay, so the nitty-gritty, and my likely feeble attempt to make a long story short. But the ultimate bottom line is that a suspected brain metastasis is negative. Hip-hip-hooray! And the second fun concern was that I had suffered a small stroke. Instead, I have a rather nasty increase in my neuropathy, just one of the many little fun party favors from all the chemo I have had. Hip-hip-hooray, I think.... While I am certainly not crazy about this development, nor the fact that it is essentially a game of attempting to control/lessen/alleviate symptoms rather than treating, curing, or eradicating them, I would say that given the choice of the three, I'll take the neuropathy.

(Because of my small tendency to be verbose, I think I will leave this post as the "I am sorry I made anyone worry unnecessarily and that I am relatively okay" and save the "wtf is happening to my body and get me to a doctor fast" details for another time. It is actually somewhat history at this point, it does remain part of my story.)

And because the sudden onset of symptoms I had experienced could also be caused by a tumor on the spine, we'll take a peak there too. Of course I was so disorganized last week, mainly because I was feeling so shitty, was scared out of my mind, and that I am essentially horribly and embarrassingly disorganized, I did in fact miss that MRI appointment last week. Oops.... But I have to admit, as those of you who know me well can attest, I very rarely miss appointments. Can I use my continuing failing memory as an excuse? Not sure on this one. I think likely a combination of both memory problems and a lack of desire to put myself in any situation that might end with more bad news.

So, my apologies to anyone who worried unnecessarily because I did not update my blog sooner. And thank you for still caring.

I have much, much more to write about, some good and some not so good, but I am hoping to try to catch up on at least Fall's festivities and fall-outs this week. Bets, anyone?

Tick Tock

2010-11-08T04:44:00.000-08:00

It's 4:44 am and I am up, again.

I don't remember the last time I went to bed and slept through the night. For some reason I can sleep without wakening if I go back to bed in the morning. I can actually sleep into the afternoon. Not particularly convenient nor conducive to family life. I have a strict policy of not napping in the day out of fear that it will only make my nighttime insomnia even worse. Plus I never seem to fully recover from the nap.

I have always been a night person, which was an asset in college but no more. Most likely it is at the center of a big ball of side effects of some medication or another. Who knows. But I never had a chronic insomnia problem before transplant.

There are a lot, and I mean a LOT, of medications out there to help a person sleep. First there are the over the counters that are marketed for sleep. There are also herbal remedies that sometimes are highly regarded. Once you finish with all of those, one starts filling scrips for sleep meds. And there are a LOT of those too. Some work this way , another that. Some start at a lower strength and can move up. Some are addictive. Well, I guess most are addictive. But do I really care when I haven't slept in days?!

I exhausted all the meds on my insurance company's formulary (For those not familiar with med speak, your insurance company has a list of drugs, for every need possible, that they will approve. If one wants to go off the list, be ready to fight for it.Of course the non-formulary scrip was denied, so my doctor and her nurse (Crystal, you seriously rock, girlfriend)appealed it. It's a bit funny because the insurance company sends a list of drugs they will cover, generic and name brand, to the doctor, encouraging her to try those. Hmmmmmm. Funny thing is that we have already tried all those, which lead to this request for a non-formulary med. So then a waste of time explaining this and providing documentation of this occurs. Insurance bullshit at its finest.

I am tired. And tired in so many ways. But for now I just want to complain about being sleep-deprived. So there. I have complained!

Now, truth or ommission? I have a HUGE, VERY IMPORTANT doctor appointment in the morning. I am scared and nervous. Perhaps I will allow a nap after that.............

Off and Running!

2010-10-19T04:38:00.000-07:00

The school year is in full swing for Brennan and John Paul. And as most parents of school-age children will know, it is also Fundraising time!

Our first fundraiser of the year is the Fun Run. All grades, K-8, and the preschoolers on a separate track, dawn the designated class color and walk and/or run a course that totals a mile or so when done. This year students could also jump rope to count as their efforts. It is quite the sight to see, 421 students walking and running around the Middle Building course.

We had beautiful weather, great music, and treats served after for all the hard-working participants. John Paul really hustled! Brennan would hold back until he knew I could see him and then, shazam! He was off!

The boys (otherwise known as me) solicited flat pledges for participating. And I would say they earned it!

I have several more stories and updates about the boys. They certainly lighten the mood from such serious topics. So I will be intertwining the joys of my life with my serious musings and posts. How can you not smile at these beautiful faces?

2010-10-18T13:23:00.000-07:00

Perhaps someone read a comment to one of my posts about their negative experience at Seattle Cacner Care Alliance/Fred Hutch. I want to publicly state that I agree to an extent about her observations.

The system works so that you see one person, then another, then someone else, and so on. It can be very difficult to create a genuine relationship when both the doctors and physician assistants (this is who you almost always see when you have a medical appointment) have their own rotation schedules. The patient is constantly told about the excellent continuity of imformation flow. And you have two separate sets of "teams", one at Clinic and one in the Hospital. It is not uncommon to have visiting doctors and staudents involved in the appointments and care. Some times you just feel like an educational tool for someone else.

I also agree that at times you are dealing with someone pompous. This is mostly the big dogs. However, they need us patients to continue their research and fund them. I think some of the doctors should stick just to research and not treat patients. Their strong and weak suits are painfully clear.

The person who wrote about her negative experience there also felt that the consult team was very dismissive. I can tell you that I was very interesting in Clinic before transplant. And I was very interesting the month I was in the Hospital getting the transplant and then building a baby step immune system. But not so much after discharge and going back to live in the special building, The Pete Gross House. I often felt "unheard". I have come to wonder what the SCCA mission is. They seem to treat the disease only. And there is so much more to me that a disease.

I could complain alot more about SCCA/Fred Hutch so maybe some time I will. Yet no matter what anyone thinks, it remains the best bone marrow transplant center in the world. So with that said, I guess the rest is trivial.

The Day I Made a A Promise I Can't Keep

2010-10-18T09:20:00.000-07:00

Craig and I have been very open with John Paul and Brennan about my illnesses. Of course this is done at an age-appropriate level. They understand it as well as they can. And some things can't be hidden. And they of course know every time I am in the hospital.

So often a child will ask a question and we can answer in very general terms. This works sometimes, but usually not with John Paul. That child continually pushes his questions and statement so close to the wall that I don't want to go over. I often search for an answer that will satisfy him and often respond in a bit more mature way. But interestingly he has somehow figured out alot.

Long ago I decided I would answer any and every question. It means it's on their minds and that they need to know, at least something that will put that worry or concern to rest. When I have been asked to make a promise, I have always made it, even if perhaps I had to tweek it a bit.

Last week my heart broke as I lied to my child for the first time. There was no way to tinker with the promise I was asked to keep. John Paul asked me to promise him that someday I would be totally all better. I lied and made the promise.

My heart broke. I went outside to cry. Then once again, for the millionth time, I wiped away the tears, pulled myself together, and came back inside with a smile on my face and attempting at normalcy. But I will forever remember that on October 4, 2010, was the day I made a promise I couldn't keep.

October: Breast Cancer Awareness Month

2010-10-18T08:55:00.000-07:00

In the post I just wrote, I mentioned that I have these super cool statement shoe laces. I got mine at the Susan G. Komen website. They have white with pink and pink with white. I can't count how many times people have commented on the pink with white.

This segways into the main point: October is Breast Cancer Awareness Month. You have probably seen pink ribbons everywhere. Even professional athletes are wearing something pink. I am a fan of the pink ribbons and all the other pink "reminder" items that appear in October.

However, all that pink means NOTHING if it does not promote action. We women MUST take care of ourselves! Please make sure you are having an annual exam by your doctor. Tell your doctor of any breast cancer history in your family. Ask what age your doctor feels you should begin receiving mammograms. If you don't like the answer, ask for one now.

You are your best champion and advocate. You must do monthly self breast exams. If you find a lump, call your doctor and ask for an appointment to have it checked. Don't feel you are overreacting. You know your body best!

Breast cancer also affects men, although rarely. Guys: If you find a lump in your chest, please follow the instructions above. I don't care if you lie about why you need an appointment with your doctor, but make one. Keep it. And go!

I'm not going to write about statistics and such since I don't know them. What I do know is that early detection is our best weapon. Think about it. How many types of cancer can we essentially diagnose ourselves? How many procedure are as simple as a mammogram, where you just get your boob smooshed? I am amazed at how relatively easy it all is, but how infrequently we do it. (Obviously there are additional tests and procedures that may be needed based on your mammogram results.But let's take one step at a time!)

Some time I will write about my personal experience but it is absolutely irrelevant to this particular post. But I am begging you, women and men alike, to do a self exam. And women, I beg of you to ask your doctor if it's time for a mammogram. You are not too busy. Make this a priority.

Next time you wear a pink ribbon or any other item designed to create breast cancer awareness, do so knowing you are taking care of your own breast health. Don't be a hypocrite.

Men, love the women in your life enough and give them the space to allow them to take care of themselves. Perhaps you could even go to her mammogram appointment and wait in the waiting room. For some reason, we women are kind of scared of it.

The New Shoes

2010-10-18T08:47:00.000-07:00

Today I put on my new Nikes. They are a blend of white and gray, with a touch of silver. I have replaced the laces with some Susan G. Komen white laces with pink ribbons. So in addition to being unbelievable comfortable, they make a statement. I think that's kind of cool.

You know how exciting it is to get a new pair of shoes and really want to wear them. It takes the right time and place to make their debut.

I bought them over a year ago, before leaving Seattle after my transplant. I knew these shoes would be part of the new me, exercising and getting back in shape. Their real statement was "I made it. Let's get on with it."

Every day when I decide what shoes to wear, there they are, reminding me of what should have been. Perhaps I will never make it to the day that I am working out again. So I might as well where the damn shoes anyways.

Seattle: The Final Chapter

2010-10-17T13:16:00.000-07:00

Taking the last flight out of Seattle, I found myself eager to put the distance between cancer and home behind. There could not be enough miles, really, to succeed. I am learning, and am reminded when I try to pretend its not there, that this is who I have become. To be more exact, it is cancer, treatments, and all the side effects that now define me. I used to think I would be getting "better" soon and all this nastiness would be a distant memory. Not so much.

I feel the need to write this one last post regarding my Seattle visit, and how some of the news is affecting my life. Some other time I can write and list all the problems and issues I have had medically, as I have been too hesitant to do so thus far. Frankly I think this is a great deal of why I don't write very often. I have only wanted to give you a happy ending. I wanted people to feel a return on their investment, so to speak. So I have skipped through most of the last year by just not writing, rather than lying. Many of you know firsthand that I am a terrible liar. I alsways end up telling on myself. However, ommission is an entirely different thing.

GREAT NEWS!! I am still in remission! This is absolutely fabulous news and each day I stay in remission bodes well for the next! I may now be made of of male cells (my donor was male) but my blood circulated through my body with no leukemia in sight!

Middle News: Seattle Cancer Center really likes for you to not have cancer anymore (I think. But more on that later.) But they sure are good at stirring the pot, creating drama, and listing your shortcomings. Think: this is too low, this is to high, we are concerned about this, etc. So even though you have just heard the great news that you are still in remission, the next sentence seems to be about something that is wrong. They should give you good news and then a lunch break, so that for at least one hour you can stay on Cloud 9.

Bad News: Unfortunately I have lost most of the immune system I had built. I heard the pontificating of statistics, still in shock. Interestingly, I had been told this news earlier that week by my local oncologist and then had Craig and I had a meeting the next day with another doctor to make sure I had heard correctly (I had been alone at the oncology appointment the day before.) I will dedicate a separate post later (I am running out of alone time, to discuss what this all means, what can be done about it, prognosis, etc. But to wrap this up, SCCA confirmed that this was not good. Their lack of attempt to comfort lies in their statements of "well, gee, sometimes this happens. We've seen this happen before" and other things that really have nothing to do with me. I know that they view us transplantees as a huge group, not regarding each patient as an individul. So I could give a shit if it happens to other people. This is me. My life. Help me, please.

Leaving Seattle

2010-10-16T15:54:00.000-07:00

I have avoided writing the conclusion of my Seattle trip for awhile. And now enough time has passed that I can't remember all the details and my memory is shot as it is...... So here we go:

The final day I was there was spent trying to get authorizations shoved through the system so I could have some tests performed right there at the mother ship. I called in a favor from the Group Health Transplant Director, who really wowed me. This time it was the SCCA system that didn't move fast enough. But the day was stressful because I checked out of the hotel but wasn't sure if I would need to stay an extra day. I'm making calls, others are making calls, and my phone is ringing off the hook as all the necessary parts can come together. Fortunately, my buddy Paul was willing to put up with me and when it looked like it wouldn't happen, he drove in to Seattle to give me a ride to the airport.

I had hoped to have a little better of a visit with him. We worked together at Coldwell Banker here in Spokane. He is one of those people who just naturally attracts people to him. I have looked up to him and admired him for years. But as things go, our time together was minimized to the drive to the airport. What I have definitely learned is to not attempt to make cancer trips also social trips. When at SCCA, your schedule and time are definitely not your own. And I get in this weird zone, and it is clearly antisocial. I always think it will be different, but it's not.

At the airport, I get to the gate to ask if I could possibly take a later flight or a flight tomorrow IF my procedure is scheduled. All the gate agent needed to see was my green card and my carry-on full of medicine and medical supplies. My flight leaves and I start my final calls, as cancer world closes at 5:00p. I came home on the next flight.

The stress and weight of the trip lifts off my shoulders as the plane takes off. I don't want a window seat. I don't need to see the city that is now rather associated with bad things. I read my magazine and try to let it all go. I must leave as much of cancer world behind me when I get home.

When I pull up to the house and am greeted by my husband and kids with big kisses and hugs, Seattle seems much farther away and much longer ago. This is where I live and where my life is. They are not necessarily the same. But I am home.

The Telephone Game

2010-09-29T06:02:00.000-07:00

This next room is in the back hall, where all the good stuff happens: Team exam rooms and Whiteboard rooms. No one escorts you to any room at all. One has just learned that when your name is called, you go find your room. Fifty years from now I could still probably walk straight to whatever room number is called. During your "Transplant Stay", you are in so many rooms a day that it is now just an automatic response. Your feet just start walking.

The Clinic Team process is both interesting and infuriating. In summary, it is much like playing that old game "telephone". Before you have even arrived, your file has already been sent by your oncologist, which presumably includes everything medical that has happened to you since your last Hutch Visit. This assumption is ironic to me because it assumes that every doctor you see has supplied your oncologist with all your information, which is kind of funny. Second, the Clinic has sent your oncologist this huge long list of tests and procedures they want completed before your visit but with enough time to be completed dictated or read and formally packaged to arrive with enough time to be reviewed. It also can include other doctors' reports that they want to see. For the patient, not knowing some of these test results is a little bit like having that information held hostage. The patient also receives an exhausting questionnaire about their sysmptons.

So with all this information having been provided in advance, the telephone rings. First the patient sees the Team Nurse. She does her thing then leaves to go report her findings to the Team Primary Provider, who is typically a PA. A little bit later the Team PA comes in and goes over the same information the Team Nurse did, your questionnaire, and does a comprehensive exam. But questions are rapid-fire, which is difficult for me. As many of you know, I now need some extra time to answer many questions, have difficulty remembering things, especially dates and timelines, and often the words I need escape me. So we have a pretty good time together...... The irony is that all the answers and dates and timelines and information is usually in their records MULTIPLE TIMES. So this exercise is rather embarrassing.

At this point in the day, I have now seen the GI PA, the GI doc, the Team Nurse, and the Team Primary Provider, all of whom do what they need to do, get whatever info they need, and pass it along to the next team player. The telephone game just keeps going. But no one leaves a message with me about what is going on.

Now that ALL this information has been summarized from one party to the next, going up the food chain, the seas part and the Team Attending MD enters. She brings with her a visiting doctor and asks me me if I mind that she be present. Hey, I am all game of seeing how many people we can shove into this little exam room. We total four of them, one of me. The psychology of this is interesting, as the four of them stand and peer down at me, naked except for that typical flimsy exam gown.

My Attending is the last person to answer the telephone and to my amazement, asks many of the same questions already asked and then starts making pronouncements of what is what, do this and do that, based on the the repeated information that has made it to her. This next part is much like the process at the dentist: the dentist does his exam while his assistant is checking the file as he reads off the numbers and condition of your teeth. Do you know what I mean? She is the head of the bunch who is going to summarize your medical conditions and not really talk to you about what these things mean and how it will affect your life. This is the Big Show time and it is clearly their show!

It happens fast and furious and includes alot of medical terms I don't know. She mumbles alot and the Team Nurse and Primary Provider are shuffling through my file looking for this or that. I am asked what symptoms are the hardest to deal with and we discuss this a little. A little but not much. I have also brought almost two pages of questions, some quick and easy, some a little more in-depth, that Craig and I have put together. But it is their show and the visit unfairly centers on what they want bto know, not what my life has become. (Hmmmm, reserach data?) But the time is edging towards 4:00, and the Transplant Clinic becomes a ghost town at 4:00. I have the distinct feeling that despite why I think I am there and what it took to get there, we are just about done. My next visit date is now being discussed as well as how we can get authorization for some tests that they want done the next day at the Hutch. I am clearly running out of time with the transplant gurus. I know it and they know it.

The rest of the room 21 story is not pleasant, for a number of reasons. First and foremost, it is almost directly stated that everyone else on my Health Care Team don't really know what they are doing or at least don't do it as well as SCCA. Really??!! I came all the way over here for you to insult me and the people who actually take care of me? If you disagree or want a different treatment regimen, it seems the most professional way to achieve that is to contact my hometown providers and discuss it with them. I was livid that SCCA would insult or demean me or any of the doctors here that have worked hard to help me, see me regularly, and have really been there for me. And while I recognize that that there have been many times that doctors here have consulted with those at SCCA, it is exactly my doctors here that I see all the time, prescribe the meds I need, answer my calls at night and on the weekend, and who genuinely seem to want to help me and make me as better as better may be. I think we would all recognize that the people at the Hutch are the supreme experts in transplant science and care, but they are not the ones who take care of you once you leave Seattle. They need to support the hometown doctors by offering their support and expertise and not dismiss them because they are not transplant experts.

I was pissed. And many of you know, once I am really pissed off enough, I shut down. Done. Time to go. And after all, is it after 4:00.

"Robertson, 29"

2010-09-23T13:44:00.000-07:00

So wonderful to be back home! Yesterday was full of "normal", which I like just fine. And of course my OCD required me to try to catch up on everything in one day. Guess what? Still can't do it. And boy am I tired! Too much activity of late, of all kinds. Must remind myself constantly that my expectations are too great and then I constantly feel the sadness and guilt that accompany this awareness.

Back to the Seattle Trip..... I've been thinking about all the signs that tell you you that have arrived on the SCCA/Fred Hutch Campus, or where to turn in, or how to distinguish the research buildings from the Clinic. And I realized that there are absolutely NO signs on how to get out, or towards a direction, street or freeway. There are also perilously few exit signs in the Clinic building. Same thing in there: lots to tell you how to get it and none on how to get out. I see a theme in this. Really, I do. It is quite the replication of having cancer, or being chronically ill, or stuck in the quagmire of transplant. Lots about what can be done to you and not so much of what will happen after that. A chronic state of being stuck. I see both irony and sadness in that.

So I go through the front doors of the Clinic (yes, as some have asked, I was by myself), and dutifully proceed to my first "appointment" on my "itinerary". Where else would one start their day but at "Registration" which is really med speak for Finance. I present appropriate personal id, as if people are actually trying to sneak in, and confirm that I do still have insurance and that I am dutifully making payments on my tab. I am given my green card, which looks like a credit card, without the magnetic stripe, that I present at whatever departments I am visiting. They swipe it, which I guess is how they can prove to the insurance companies being billed that I was actually there. I have a collection of green cards. Kind of funny.

Next stop is the Chapel. I am alone and can pray aloud. The irony is that the chapel is really just a dimmed office with wooden floors and nicer chairs than in the exam rooms. There is no indication of any particular faith, which I guess is the way that in today's world it must be done. As sad as that is, I am ever grateful to know my God is everywhere, and He doesn't need anything other than my inner voice to hear my prayers.

It is time for Floor 6. Transplant Clinic is its primary nickname. Not fun, at all. Bad memories. Great views of Lake Union though. I present myself at Reception, and hand over my green card. It is recorded and returned. I know the drill and I know where the comfiest chair is, so I make a beeline. Ah, home away from home..... Mr. Reception calls back to the Patient Flow Coordinator, who confirms my assigned room is ready. Shortly, "Robertson, 29" is announced to the waiting room. And I am off to Room 29!

I had some fun in there. I really did. I hope you enjoy these pictures and my silliness as much as I did. I am quite sure that the Clinic won't.... And I remind myself, for the 10000 time, that they are really serious here.

But I also share these exciting pictures so you can see what one of their rooms really does look like. My first impression is that the exam table looks wet. At some point I get bored enough to lie on it and take a self-portrait, which I hope you enjoy. The room is quite techy but I never see all its glory used. The calendar is pretty big for the purpose of just counting days. So I add on the September 20 square that it's my husband Craig's birthday and ironically that I am here. At least it now looks like a real person had a real use for the calendar.

Bored, waiting, what to do next? Don't ask why I had this souvenir from my flight over, but it was fun. I wish I could find out how long it takes for someone to notice it. A little like I Spy, I suppose. But I do truly hope that some other patient saw it and smiled.

Room 29 is to be my exam room for GI. I see the PA, then he goes and reports his findings to the GI Doc. Then he comes in and lists a number of things that can now be wrong with me, and tells me I need a procedure and then is off to consult with my Clinic "Team". I decide that the artwork in Room 29 is not soothing me and I am happy when it is announced "Robertson, 21". Mr. GI Dr. hasn't returned yet, but we must make patient flow goals. And I get out!

I Went

2010-09-22T14:06:00.000-07:00

It may have taken everything I had inside, which there's not much left, but I actually did go to Seattle. I got back late last night, but early enough to fall asleep snuggling with my boys. It now seems like I was gone a very long time, in a very far away place, and I keep thinking it's Monday. Well, at least it's a little change-up.

To all of you who have posted, emailed, called and texted to offer your support and prayers, it worked! I do sometimes feel that without this incredible energy sent to me that perhaps I wouldn't go through with some things. That's not coming out right, but I think you know what I mean.

Such a quick flight over, which is preferred by control freaks like me, and voila, I am in Seattle! My sister-in-law, Angie, picked me up, after I figured out I had told her the wrong airline, and we were on our way in her adorable blue Bug. Yes, I punched her arm on behalf of Craig, John Paul, and Brennan. As we were driving along, we passed a Sizzler. A Sizzler!!!!! Hadn't been to one in twenty years or so (scary) and it turned out that her husband, Jim, also ranks the Siz as a fave.

As we visited at linner, it was like avoiding talking about the pink elephant in the room. But it was nice to see them and it was generous of her to play taxi and ensure I was fed. It was time for me to go and check in at the hotel. I was crashing. I was exhausted and I was turning inwards (one of my worst qualities) as I recognized what I was actually there for.

I was asleep as soon as I had turned the tv on and laid atop the bed. A couple of hours later I woke up and continued texting my friend Paul, a former Spokanite. The plan was that i would meet Paul and his wife, Gina, for dinner. But it was clear that I was zapped and socially empty, so getting together was put off to Monday.

It's Monday morning and I have been up for hours. I dress in my armour clothes and make-up. It is my feeble attempt to not look sick and to level the playing field. Fred Hutch has been calling Craig's cell phone to add appointments onto my patient "itinerary". Finally they realize it would be best to call my cell, the schedule is changed and my day starts earlier. The shuttle at the hotel explains that I would have to take the shuttle downtown and then be dropped off at SCCA on the way back. I start walking.

The SCCA/Fred Hutch campus is really pretty incredible. It takes up several blocks in length and width. The architecture is cool and I love that all the buildings are red brick, balancing a modern design. Lots of trees, grass, bushes. It's either green or red no matter where you look. But they do have some signs just in case you have wandered into Cancer Land unintentionally.

I pause to take a photo of myself, as I am stepping onto the Clinic grounds. So do I look different than my self-portrait before I left the hotel? I look at the building and those damn doors. They are open at first glance, some eery way of telling me to come in. Then they are closed again, yet I know I have to go down there and make them open again, for me.

In fact, for you doubters, I walked in.

I will write later about what all the fun I had. But I am both short on time (time to pick up the boys) and I am also hoping I can convey what it FEELS like, not just what happens there. It's not just any building or any doors. You've followed how much I didn't even want to go to Seattle, just a City. It all becomes more than just a place or a thing. They trigger that "something" that we try to swallow down as far as we can and admit to no one.

Going Deep

2010-09-19T06:38:00.000-07:00

I finally gave up trying to sleep at 3:00 am. My body screams for the rest. My emotional tank is near empty and needs to refuel. But my brain, my mind, my soul understand that this trip and the next few days will largely shape my life. If not forever, then at least until I have to go back again.

Nothing is mellow at SCCA. My favorite summation is, "They are serious.". It is completely unreasonable to expect all good news, no matter who you are, it seems. And I know my visit will be a hard one.

It is insane to realize that a place and a small group of people will tell you what your life will be. Typically, for problem children like me, I get a 3-month, a 6-month, and a 1-year projection. There is the white board room where statistics and odds are drawn out for you. You learn what percentage of the transplant patients that have made it this far are going to die in the next year. Year two odds were one in three. That gets your attention.

I guess they have to tell you ALL the bad things that might happen to cover their butts. Yet I am one person out of howevere many they will see that day. Once our white board meeting is over, they simply erase the board to ready for the next scared patient. But my whiteboard remains seared in my mind and affects perspective on literally everything. I have thought about stealing the board markers. Alas, they probably have more.....

With my many complications and various situations, I don't want to go to the white board room this week. I am scared.

But now I am going to ask that you not be alarmed if I don't write in the next few days. All it will mean is that I am exhausted and simply can't do anymore. Then again, with my sudden writing spurt of the last week or so, you never know. I also ask that you pray for me or meditate for me or send good energy and thoughts my way. I need you.

I am going deep into SallyLand. I have no weapons. I have no money for the ransom. I have already been here too long and I WANT OUT.

The plane leaves in four hours.

I still don't want to go.

And I'm Off!

2010-09-18T16:45:00.000-07:00

I leave for Seattle in the morning. I still don't want to go. Seattle Cancer Care Alliance (SCCA) and Fred Hutch. No one wants to go there. It is a place of last resort. Death is palpable.

I still don't want to go back there. I accept it is necessary but it seems they could do much by phone. Instead they love to issue command performances.

Everything there is complicated and my brain just doesn't work that way anymore. Everything is stressful. There is nowhere, other than the chapel, to go where there aren't as many people and it's not so loud. But as you can guess, the strongest negotiations take place in there. And it's right across the hall from Finance. And nobody wants to go in there.

I still don't want to go. Unfortunately I need their help and it's their game.

My Pride and Joy

2010-09-18T16:32:00.000-07:00

Thank you to everyone who left a comment, sent an email, texted, or left messages about the pictures I posted of the boys's first day of school. It seems impossible that they are five and seven and 3/4 (John Paul would never forgive me not adding that detail) and in school all day. Again, I lost that three year time period and still can't reconcile the gap.

They are beautiful or I guess I should say handsome to not embarrass them. Both are so photogenic and I love taking pictures of them. Their personalities seem to come through their pictures. Or perhaps it is because I know them. Regardless, they are exceptional to their Mom.

They are boys, in every sense of the word. No longer little boys, they are running at full steam into this next age phase. I was speechless when someone told me that John Paul is actually a pre-tween. Still can't swallow that one! And Brennan is bigger than most of his classmates and certainly has the physical strength over John Paul. In fact, Brennan is currently learning that someone is a little bit bigger and a little bit stronger at school...... I will keep you posted on that one.

They are themselves, distinctly Brennan and John Paul. I see much of Craig and I in both, and then many other characteristics of extended family in both as well. It really is fascinating.

I can honestly say I like them. That may seem a silly thing to say. My love for my children is unconditional but that doesn't always mean that a mother likes her child as well. I am fortunate to say that I do. Or at least most of the time.....

The greatest accomplishment, the greatest joy, my most important footprint that I will leave on this Earth are John Paul and Brennan. I occasionally get glimpses into their futures and know they are destined for full lives. They are overwhelmingly my pride and joy.

Back to School

2010-09-17T06:08:00.000-07:00

Holy smokes! John Paul has just started the second grade and Brennan is in Kindergarten! It genuinely doesn't seem possible. I have lost so much time from being sick that it literally doesn't seem possible. Especially regarding B. In my mind he is still a toddler, the little guy I knew so well before I was sick. Life has tricked me....he is now in his uniform and off to all-day school.

Last night was Back to School Night. The principal gives an overview of the school, different programs, enrollment data, and the school finances. All Saints remains blessed by the many generous supporters who ensure that we are not just getting by but that each year some aspect of the school receives some major overhauls.

We also have parishes and families that ensure that all children seeking a Catholic education will receive one. No child is ever turned away due to finances. Now that is amazing. How blessed we are!

Okay, okay, I know what you really want to see and hear about are the boys. so here goes:

We got up ontime, remembered to bring everything we were supposed to, remembered to eat breakfast, and still had some time at home to take some pics. I kept staring at Brennan, thinking, "Why is he wearing John Paul"s uniform?" And I marveled at how handsome and grown up they both are. I am a proud Mama!

We made it to school on time and John Paul, Craig, and i got Brennan to his classroom. He was so shy! It amazed me when as a parent you are just sure how your child will act. And the you get the opposite! He has the incredible Mrs. Thielman as his first grade teacher. John Paul was in her class two years ago. She and her husband, and their dog Ruby, had so graciously brought the boys over to Seattle to see me during Spring Break. So she is a familiar face and person, which helps. She wisely placed his seat near her desk..... Suddenly, he decided it was time for us to go, and off we went!

John Paul also has a wonderful teacher, Mrs. Eber. We have heard only positive things about her and he was pleased that he was placed in her class. Now going to his room was a bit different. Once we found his spot, his backpack hook, and where to put his lunchpack, we were told we should go. Really?? In second grade? He is excited that he sits with his buddies. Craig and I wonder how long that will last.....

In another post I will share about how school is going, but the high deman for first day pictures and info demanded this be done first! And for a change it is a nice, positive topic and post!

This Blog

2010-09-17T06:01:00.000-07:00

Wow....this blog needs an overhaul! Over the next couple of weeks you will see alot of changes, from appearance to content. All suggestions are welcomed!!

Also, if there is anything you'd like to see or any topics you'd like covered, let me know. And feel free to do so anomylously.

And for you techies, if you know I am off the mark or have ideas for upgrades, please let me know.

Apparently, when I am signed in to the site, you will not be able to access it. Kepp checking back!

I also am going to email an invitation to come back to my site. If you want someone to be included, or maybe yourself, please send me an email address, either as a comment here or directly to my email, sallydrobertson@comcast.net.

Definitely time to update some pictures, bio info, and data.

Please visit SallyLand again!

Time

2010-09-16T14:44:00.000-07:00

Just about an hour ago I realized that it is Thursday, not Wednesday. You'd think all the many clues in the day would have triggered this date correction, but I missed them. I have started noticing how often I look at the clock and then look outside for am/pm adjustment.

The worst thing about clocks is that they seem to move either entirely too fast or completely too slow. Each night when I wake up so many times, I always ask the clock to please at least give me an hour until I am looking at it again. How silly is that? Ultimately I end up with revolving time chunks. There is no clear deliniation between am and pm. It's all the same. I live in time chunks. Yes, that is the way to describe it.

The "New" Normal

2010-09-15T10:22:00.001-07:00

One of my friends (thank you, Nancy!) commented on my blog about having to learn "new" ways of doing things. She was absolutely right. We have gone through many "new" ways as my health has changed, as my energy has changed, as my abilities have changed, and so on. While in Seattle for transplant, they talked alot about "new normals". They encourage both the patients and the caregivers to prepare for this and in fact, there are many "new normals" while still in Seattle.

However, the general consensus seems to be that when the patient comes home from Seattle that he or she is now well. I mean, they must be well to come home, right? Life should pretty much be as it was before. The expectations and pressures put on me, and that I put on myself, to be fine, tbe like I used to be, to just be freakin' normal, were huge. I failed every test of being fine and normal. It is like banging my head against the wall every day. It is incredibly lonely too.

The problem is that I am not who I used to be, I don't really have a "new" normal. My life exists in twelve hour chunks, basically. I no longer commit to anything because too often I end up sick and break my word and commitment. Sometimes planning even in a twelve hour stretch is risky. An example is being out to dinner at 7:00 pm and being in the hospital at 4:00 am. (Meningitis. Who knew.). I am rarely on time. I rarely remember the names of people I meet. I have lots of alarms set because I literally can forget the really important things, like picking up my kids. I am no longer smart. My body is destroyed, inside and out. My feeding tube bulges out of my clothes. I am afraid to cook when I am alone in the house because I might forget there is food on the stove or in the oven. At least I finally have hair.I won't bore you by continuing to list all the changes that I have to "accept".

I don't think my family is thrilled about all the "new" things either. All of us have exhausted ourselves to just get to today. When is the proverbial day off? How do we learn to just accept it? We didn't know it would be like this. And that there would be so many new problems, ordeals, changes, and traumas. We are tired.

Friendships get twisted, tried, and tested. Because a friend can move on more easily, my heart has been incredibly hurt by some friends who have simply had enough. Apparently it is very draining to be my friend, to get swallowed by all this crap. . The strength of many relationships have been tested and sadly, some have gone by the wayside. Part of me understands, the other part just cries and gets angrier at my "new" life. My family, unfortunately for them, is stuck with me....

I think you get it. I could quite literally compose a very long list of how I am "new". Even thinking about it depresses me. In fact, I am depressed alot of the time. I can't stand the "new" person that I am. Not that the "old" me was perfect, but I want what I had back. Please put my body parts back. Please put my health back to pre-cancer days. It was scary enough then..... Please give me my mind back, my intelligence, my sanity. Please pull me out of this dark pit. I hate this.

I guess this is my "new normal".I am in grave internal conflict for feeling this way when other have already died from pre or post transplant issues. It makes me feel ungrateful. And the odds are that one of every three patients who make it to year two post-transplant die. I feel guilty that I am alive while others continue to die. But I would imagine their lives weren't particularly pleasant if they declined so significantly that it lead to their death. The counselors say it is survivors guilt.

But I guess that ultimately what I am trying to say is that this sucks.

"How Are You?"

2010-09-14T14:21:00.001-07:00

How are you? How many times a day do we ask this or do others ask this of us?

Usually the person asking, including ourselves, doesn't really wait for or expect an answer. It seems just part of a dying social etiquette. And usually the answer is "good", "fine" or "okay". How often do we match the answer to the person we are speaking to? This seems to only occur when the answer is something unusual, something that doesn't just flow with what the ear expects to hear.

If the person rates their status as less than good, fine or okay, we may momentarily pause to look the person in the eye and ask "What's going on?" or "Are you okay?" Generally we don't put down the bag we are holding, nor shut the open car door, or stop walking and turn around in order to focus on the person who has just failed to answer the benign "How are you?" question properly. We are looking for a very quick description of the problems faced, a brief reason why things are not fine, a condensed explanation of what is wrong. More often than not, once the other person speaks these brief replies, we are back to what we were doing, with an airy "I hope your day gets better" or a "Let me know if I can help".

Crazy, isn't it?

It is definitely easier to go about one's day without knowing if the people in our lives are "okay" or not. We dole out our energy based on how important the other person is and whether or not we even heard the response anyways. Usually there is no opportunity to completely stop and place our focus on another. The day is long, the list is long, the commitments are too many. So actually being able to stop, look the other person in the eye, and LISTEN is rare. Maybe we don't necessarily want to know. Then we might have to do something about it

Another Sleepness Night

2010-09-14T06:12:00.000-07:00

Part of the problem of not knowing the day or the time or what I am supposed to be doing and when is that I get very little sleep. This has been going on for many many months. Craig and I think it is likely the result of some med or combination of meds that I am taking, but which one? Currently I take 32 pills a day, plus two medication patches that I switch every 3 days. So, really, how would we begin to figure that out?

I typically won't remember what I did a few hours ago nor what I am supposed to be doing a few hours from now. I frequently don't remember what someone has told me, particularly the details. I write alot of things down in a notebook in my purse or on a notepad at home. Unfortunately I often forget that I have even written something down. My best method at this point is to make a pile of all the notes I have written down and then go through the pile. However my piles of "Need to Do" continues to grow. I try to prioritize and then I get confused and start it over. Those of you who know how OCD I am will certainly know that this "system" drives me crazy!

I do have the huge wall calendar and my Palm and I try to put things in both and and an alarm in my Palm. This seems to be the most effective method. But it does absolutely nothing for relationships. I come off as though I don't care enough about what someone has told me to even remember. This simply is not the case. I just don't remember. I don't remember what was told to me nor what I said to you.

I know that my chronic lack of sleep must have a great deal to do with this. I do believe I have chemo brain and cognitive damages and that they are just amplified by tiredness. I can fall asleep anywhere, I just can't stay asleep. I have tried all the typical techniques, plus every sleep medication on my health insurance formulary list. My doctor has prescribed a medication not on the list, which has been in appeal for over a month. Great.

Usually, time is a snippet in a huge long line of time. I go to bed readily and fall right to sleep. But once I have gotten up six times, I stop trying. Or when my sleep periods are only fifteen minutes before waking up, I stop trying after four periods. When I wake up, I am awake. Not the kind that one wakes up and rolls over. I am wide awake.Almost every day I struggle to stay awake and avoid naps for fear I won't sleep at all at night.

I have no doubt that the lack of sleep affects pretty much everything else in my life. We all know that when we are too tired everything gets amplified. Yuck!

So here I am writing again while the house is still quiet. It is a lonely time.

Ground Hog Day

2010-09-13T09:07:00.001-07:00

Do you remember the movie "Ground Hog Day"? Or that Adam Sandler movie that I think is called 50 Dates? Anyways, the theme of both movies is that each day is repeated over and over again, as the main character has no memory of having done the exact same thing yesterday, and the day before that, and so on. I feel I am in my own Ground Hog Day.

Because my grasp of time is so very limited and confusing, the days literally blur together. It is a very odd sensation and at times really scary. Often enough I don't know the day of the week, what obligations and commitments may belong to the particular day. The difference of am and pm can easily get lost. Where do I need to be and when. The same for the kids. I often don't know what month it is. I have even had trouble knowing the year.

As you can imagine, this memory deficit is incredible maddening and usually acutely embarrassing. I do my best by taking cues from the people around me, what they are doing or talking about or referring to. My boys are an ex cellent trigger for filling in the blanks. Craig's leaving for work and coming home are hude time placers.

I wrote yesterday about alarms and lists. Sadly, this is really true and what probably allows me to even function. Craig woke me before he left and then I have a bedside alarm set and the my cell phone alarm set in another room. So far this triple wake-up call is working.

My heart and soul are devastated by this loss of memory. I used to be so organized and very on top of things. It is an insult to a trait I was so proud of to lose it and so publicly. I want my pre-everything brain back.

Just to make it all even more fun, I often can't find the correct words. My brain heads in the right direction but then they are stuck. And for more fun, sometimes my mouth is moving to say the word and no sound comes out. It sounds like a severe stutter, with my mouth moving and only guttural noise coing out. Nice.

I feel doubly betrayed. I know my body doesn't work, but my mind too?!

Then I feel like a selfish ignorant person as I recognize some larger than life things
1. Some people can't speak at all are completely handicapped in their mental abilities to even do what my limits are.
2.I am alive. Isn't that enough?

It is all a matter of perspective. Someone always has it worse and someone always has it better. But the honest truth is that I hate this. I used to be smart. I was prepared for so many losses in my body but not so much for long-term intellectual losses.

Can it get better? Maybe. Maybe not. It's a wait and see item in the oncology world. So far mine has just gotten worse.

I am just going to say it, with the caveat that I may unintentionally offend: I HATE FEELING STUPID.

What is your name? Your child's name? It's nice to meet you for the fifth time. What day is it? What time is it? Where do I have to be and when? Don't let the boys be late for school. When the alarm to pick them up sounds, just go then, or I will lode time again. When was the last time I was here? Who was with me? What did we do? I swear you didn't tell me that. I am positive I told you that. How much money is that? Will you please count out my change again? What is my PIN? How much was that? Will you please repeat what you are saying in a different way? When did we last talk? What did I do yesterday? What was I doing two hours ago? What's next on my list? Why am I calling you?I'm sorry....I don't remember the other four times we were introduced. Shit, I forgot about the food in the oven. Oh well, crispy is good. Make sure to set a timer to remember that the pasta is boiling. But as long as nobody touched the overflowing pot, we can always just start over.

Do you kind of see how poorly my memory and mind are now working? If you know me personally, is this insane or what?

Alarm just sounded to go to Oncology so I will end my rant here. Let me know if you have any questions. I have decided that if I am going to start blogging again, it can only be with the blunt and honest truths. Read it if you are curious, or ignore it if it is all just a downer. But this is the truth of SallyLand.

Today

2010-09-12T07:12:00.000-07:00

Apparently it is Sunday, September 12, 7:15 am. My computer told me this, as did my cell phone. It is not dark outside and it is not light outside, so I know it is either early morning or early evening. Everyone else in my house is still sleeping, so I will go with morning. Craig's truck is still here so he has not left for work. So either he has the day off and I need to get my kids up and ready for school or it is a weekend morning. He was at the kids' sports games yesterday, so I'll go with Sunday. It is cool outside, that nippy air that only comes in fall or spring. The kids just went back to school so again and yesterday's sports were soccer and football, so it must be fall.

I look at my wall calendar. It is really meant for an office but I needed something I can literally write every commitment and event on so that somebody, including me, will know what the day holds. Who needs to be where and when. Yes, I am now certain that it is September 12, a Sunday. I am also reminded that John Paul will visit the children's choir practice this morning at 9:15. Mass follows at 10:30. The NFL game schedule will likely shape the rest of the day. Oh, we have invited some friends over to watch the games.

Okay, so build out from here. John Paul will need a ride to choir. I will bring Brennan with us so the three of us can then go to Mass. The three of us need appropriate clothing. Have I done the laundry? I just checked the hamper and it is full. And my stairs to the basement are covered with more laundry. How convenient this laundry chute substitute is. Quietly I will check closets to confirm there is something to wear. And now I know I must do laundry today. I need to clean off the stairs anyways because we are having company over.

We will drive home and then I must remember to feed my family. Even though I won't be hungry, they will be. Eventually someone will beg for food and then I will know to make lunch. What time are our friends coming over? The calendar doesn't say. I will make the embarrassing phone call to ask and to ask if we have made plans for lunch, snacks, or dinner. Someone will complain that they are hungry at some point, so perhaps I will skip the call, wait for them to show up, and wing it. This will save some pride. I can always drive over to Albertsons once they get here and I have an idea of what we will need.

I also learn from the wall calendar that today is Grandparent's Day. I smile as I think about the grandparents in our lives and my heart fills with love that is mixed with sorrow. I also have a chuckle over the complexity of this day of honor, the result of mixed families. I never got the boys' cards finished so I had written all our grandparents earlier this week. Thank goodness I had made a note to myself about this special day. Currently my phone says I have 473 notes to myself, things important enough to make it to the list. I am quite sure that many important things are on that list. But I am grateful I have somehow gotten this one right. We will call my Mom and Dad, Craig's Mom, Craig's Dad and Step-Mom, and Craig's first Step-Mom. We will also call Craig's Grandmother. I make a huge note and tape it to the kitchen cabinet door so that I will remember to make these calls.

It would be helpful if Grandparents' Day was a little more promoted. Perhaps that would help me to remember. Maybe not. I should be able to remember this holiday regardless.

The fact that today is a Sunday also heralds a number of other things I will need to remember. Thank goodness that I have made a list of what must be done on every day of the week. It is much easier to use this checklist. I must also confirm that multiple alarm clocks are set correctly for tomorrow. Perhaps this week will flow more smoothly.

I will review the calendar and To Do Lists for this week, today and each day. I have set my phone alarm to sound for all scheduled commitments, from taking my kids to school, to doctors appointments, to sports practices, and all the inbetweens. Once again I will look at the overwhelming list of things I would like to get done and accept that I won't. I begin my short-list of what has to be done. I add a few hopefuls too. Most of you will know that this OCD trend has always been there. What you may not know is that it is worse, or perhaps easier, when it is simply impossible, or I forget.

I am supposed to go over to the Hutch at Seattle Cancer Care Alliance next Sunday. I have yet to firgure out care for my children, transportation and adult supervision before and after school, lunch ingredients, sports practice rides, and so on. This goes on the priority list of course. I really don't want to go to Seattle, nor can we afford it. Can't I just skip it?

It's now 7:45. It is still the morning of September 12, 2010. Today will only happen once. My calendar says it will be a good day. I hope so. I would rather remember the vague but certain conclusion that it was.

Happy Belated Mother's Day!

2010-05-12T14:09:00.000-07:00

Happy Belated Mother's Day to all of you Moms who might visit this site! I have been incredibly blessed to have the wonderful women in my life who through both example and tenacity have shared their love with me. I agree that a woman who gives birth is not necessarily a mother. It is a certain spirit that a woman possesses, even if she has not given birth herself, that makes a woman a mother. It is a unique sixth sense, a silent understanding, the gift to discern. These are some of the quailities that a mother possesses, along with a fierce and loyal love. I do believe that any person who has not been a mother, by the act of giving birth or more importantly by choosing and committing to that bond, cannot know what being a mother is.

Without a long life story, I can summarily tell you that my mother has literally been the wind beneath my wings, my entire life. At times I knew she was carrying me, loving me enough that by her sheer will I would make it. At others, even when I questioned if she was there for me, her guiding hand and absolute determination that I would keep going moved me forward each day. Even our closest girlfriends can be gone in an instant, gone the bonds we were sure would be sealed forever. But it is only a parent's love that has the ability to be truly and genuinely unconditional. Arguments occur, disagreements happen, life happens. But my mother has taught me that true unconditional love can and does exist.

Are you familiar with CNN's Heroes campaign? Or the MLB's hero campaign? I always nominate my mom because she is the most remarkable person I know. She has given at every stage of her life, nurtured and been driven to improve whatever is around her. Her "golden years" have only amazed me all the more, from her community activism to her incredible journey fighting for every inch back from a series of strokes.

And she has cute clothes.

Thankfully my mom had the good judgement to ask her good friend Denise to be my Godmother. Imagine the pre-baby Bay Area fun life of the late 60's. And the same woman who stood for my baptism was forty years later standing for my Confirmation and First Communion. A constant through every single year of my life, Denise has taught me how a woman can choose to be a mother. Of couurse it helps if the child involved participates........

I sign off with a heart full of love for my Mom, my Godmother, and the many other women who have been in my life who shared their mother's love with me. We uncannily seem to know that we each have to make it. We will find a way to help each other see another day. Because only a mother knows instinctively that there is no other choice. We're Moms!

House Arrest

2010-05-03T09:27:00.000-07:00

Once again, I am on house arrest. I lost my license, due to medical, mid-April. The loss of freedom is immense and the isolation suffocating. I had forgotten just how difficult it is to try to be normal when I am not allowed to drive. Perhaps my greatest loss is not being able to drive my kids to and from school. It is one of the few acts of normalcy I had as their Mom. And to completely rely on others for the boys' rides, the market, my plethora of doctor appointments, errands, picking up meds, you name it. It absolutely crushes me to have to ask for help again and on such a large scale.

The wonderful and affirming part of my current house arrest is the incredible friends who organized my life and claimed their days to be my personal taxi. I asked Steph if she could provide school rides for John Paul (She drove him every day last year). Next thing I know, she has my schedule covered too. Let me reiterate. Not only does she secure the kids' rides to and from school, but she secures commitments from other school moms to cover my rides. Incredible. But those of you who know Steph won't be that surprised.

A special shout-out to these generous Moms who didn't ask why, only when and where. It overwhelms me to realize that we really are not only school moms together but friends. So Steph, Lisa, Bridget, Michele, Liz, Ella, Mrs. Barnum, Emily, and Mia,and anyone else who may be on the back-up list, once again you have saved me. Thank you.

My special bus application is pending. Undoubtedly it will be helpful. However, the kids are not allowed on, so it will not help with anything that may involve the boys. (Did you really think I was about to say that I was hoping to take them to and from school in the bus????!!) Anyways, it can take up to two hours to get to your appointment, and quite frankly, it will be emotionally excruciating to take that next step.

I find it interesting how difficult it is to have to receive the help. And I didn't even have to ask for it! It is one thing when you need some short-term help. But my need seems to keep going, and going, and going. It is also hard to recognize that the same people who are at the ready to help now have also helped in the past. A sort of double-dipping, if you will. I have been told in very firm, and no uncertain terms, that I must learn to accept when offered. And that my turn will come to give back. I have also received hints that one should graciously accept when others step forward to give of themselves. I am so grateful, yet embarrassed at the same time. I honestly thought that by now, it would be my turn to help others and to pay it all forward.

Despite all the incredible help there is still a part of me that feels like all that is missing is the chunky ankle bracelet. Because I can't go about my business alone, I feel very bare that others now know every little bit of my business. Does that make sense? I have been hiding again since Seattle (duh, like you hadn't noticed I was up to my same old cocooning tricks) and then suddenly it's all back in the open to an extent.

I have lost the ability to communicate what I am trying to say. And this too, is nothing new. Just getting worse and worse. My concentration continues to decline and my memory gets worse and worse. Add to the mix some confusion, and you get Sally.

As much as I would like to sign off now, the big pink elephant is still in the room. And if I am going to try to make a comeback, I might as well start now. But ugh, the truth can be so hard! And often it seems like explaining what is going on now is difficult because I didn't share what happened then. So please be patient with me as I try to explain things as best I can without going back to March 8, 2010, from when I last posted about remission.

On April 15, my oncologist, at the direction of Neurology, informed me that I am no longer able to drive. Thankfully, I was allowed to promise that I would not drive and at this point, because I am being 100% compliant, State Licensing has not been formally contacted. Knowing what all is at stake, I made my promise from deep in my soul. I have little left to offer than my word, and my word is true. If Licensing were to be contacted, I would legally be unable to drive for at least six months after I am found to be on a successful treatment regime. Clearly, it is in my best interest to keep the promise I have made, albeit a very heavy one.

Okay, the elephant is still there. I have experienced several "episodes" of yet undetermined origin and definition. I have called them seizures, as that is how I would describe them. There are some other possibilities now on the table, but a neurological cause would seem the most likely. So until I complete the neuro tests and see the neurologist and get cleared to drive again, here I am. (It is a very long story why all of this is taking so long but unfortunately my life is determined by their pace, not mine. SO FRUSTRATING!).

However, when I had my original Neuro consult, the doctor had told me that I could still drive, at least until we knew what exactly was going on. But that doctor quit without notice and the new neurologist adamantly disagreed. But I had worried about whether driving was the "right" thing to do. Several of those close to me had broached the morality of continuing to drive. But I so didn't want to give up my freedom. Of course, having had another seizure in the meantime, I could easily agree that loss of consciousness does not make me a safe driver. Not for me, my kids, nor for you. So while I accepted it logically, I didn't want to accept that emotionally. And being able to feel it coming, I tried so hard to convince myself and others that I was still in control, that I could pull over in time. I am so damn stubborn but at the same time, I am fighting inch by inch, to get my life back.

Hopefully you are able to see through all my rambling that yes, I could have just written "I lost my license." and that would have covered this topic. But it really is so much, so much more than that. It takes another piece of me away. I am struggling to figure out who I am. I am grieving the loss of who I was, to accept that I will never be that me again. Yet, it also tangibly reminds me of how blessed I am to have such good people in my life, who want to continue to give despite in several cases, struggling with their own life issues at the same time.

One day at a time, right? But all my "one days" are blurring and my energy for all of this is waning. I am tired of living in Sally Land.

One Little Word.....

2010-03-08T20:46:00.000-08:00

REMISSION!!!!!!!

Just Another Busy Day....With Meningitis

2010-03-03T09:21:00.000-08:00

Yep, you read it correctly. I am entirely too busy just trying to keep up during my productive hours of the productive days. Then getting caught up from what seems a constant flow of new issues. And yep, the "With Meningitis" is true.

I don't have a clue how I got. But did I! Just hours after I was enjoying appetizers with friends, I was in the hospital. It was that pesky 104.7 fever that clinched that one. And my head and neck. Serious pain. I was so out of it that I don't even remember being taken from the ER to my 7 South (Cancer Floor) room. I do, unfortunately remember the lumbar puncture in the ER (they used my "body art" to guide the needle) and vague recollections of the CT and x-rays.

The next few days were awful. Fevers, pain, huge pain, and lots of vomiting. Then of course I pulled the quick ticket out and came home to do it all some more.

I am somewhat more functioning now but really just don't feel well, despite various and assorted medications and lots of rest. So now I am also frustrated by this. Who is fine one minute then hours later really not fine? Hey, I guess that's just how I roll....

But I did have a great couple of hours at the For No Reason event!

Scene of The Crime

2010-02-22T04:35:00.000-08:00

I kind of skipped over my feelings about going back to Seattle in my previous post. The truth is it is all very heavy on my heart. I am anxious for my BMB results. I am anxious about what kind of year two they have planned for me. I am anxious that year two may not be that much more restrictive than the last.

It really feels like going back to the scene of the crime. I have been thinking about what my day was like a year ago constantly for the last several weeks. What tests was I doing? What news was I receiving? How was I holding up? How crazy was I driving my family and friends?

A year ago was the hardest time in my life, ever. I have not reached a point of not recalling so vividly how unpleasant it was. I have yet to share the nitty-gritty of transplant. I suppose I have not been ready. But I will be someday.

This is also why I could never stay at The Pete Gross House again. And why I can't stay at the new long-term follow-up housing facility. I just can't be immersed in it 24 hours a day. They offer short-term housing for people who are back for their anniversary follow-ups. But I can't see it, feel it, smell it, and be in it again. Ever.

The Seattle List

2010-02-22T04:30:00.000-08:00

It is exciting, in a way, to be going back to Fred Hutch and all it signifies. It is very triumphant that I have made it this far. And we are exciting to be preparing "The Seattle List". It is a comprehensive list of questions and topics to review with them. Most are desires for lifted restrictions, or at least not as oppressive.

It is very challenging to follow all the rules! Hopefully they will be significantly modified after this one year anniversary mark. I am looking forward to some normalcy and fun when I am feeling well and have the energy!

So please pray for me, or send positive thoughts. My life seems so on-hold and I want it back!

And Again...

2010-02-22T04:03:00.000-08:00

Again, sorry to leave you hanging! The last week has been filled with the musical chairs of family sickness. First Brennan and Craig with a cold two weeks ago. Then John Paul last week (it was only a three day week at school and he was home sick, along with five other classmates) then it was my turn. Ugh, my immune system is still so weak. It sent me to bed for three days. A common cold....

I had to cancel three big medical appointments: dentist, surgeon, and oncology. I will reschedule them today. They were all significant and it may be hard to get back in this week. But sharing a cold in the dentist's and assistant's face, and especially into the Cancer Treatment Center (surgeon and oncologist) is just not happening. Most everyone else in there are also immuno-compromised from treatment.

So here's the update:

1. My incision has made some progress but I am not sure if it is enough. I do not know if it will satisfy the surgeon and avoid a second surgery. When I saw her last week, she said if it was not healing significantly by last Friday's appointment, which I had to cancel, that she would need to take me back in the OR, "clean it out" and re-suture like crazy. She said this almost never happens, but as a breast cancer surgeon, the only time she sees it happen is with patients who have had a lot of chemo and other heavy medical issues. Plus I am immunosuppressed, which really complicates healing. That's me! So I have been packing it, continuing my antibiotics, and waiting for miracles....

2. I STILL don't know the final results of my bone marrow biopsy. Apparently Seattle is holding them and all will be revealed when I am there in two weeks. I think this is rather unfair. But I guess it's part of how they get us transplant patients to make the trip back.

The Medical Issues of Others in The Robertson Household

2010-02-15T04:33:00.000-08:00

I will be writing soon about others in my life. It just has taken awhile to update you on my issues from the past two plus weeks, and I am not yet done! So here is a break from reading about me.....

John Paul's nosebleeds continue to be a problem. He's seen our PCP (you rock yet again, Dr. LaSalle) a couple of times about this. She has recommended, and we have done, all the standard efforts to reduce his bloody nose frequency. They did become less frequent for awhile, then returned with a vengence in mid-January. Dr. LaSalle had recommened that if the frequency spead up again that we get a CBC (Complete Blood Count) to see if that gave us any clues. This, of course, was something I did not want to do. A blood draw is naturally terrifing for a 7 year-old. I also had an irrational fear that it would show he had leukemia (even though my leakemia is not hereditary. But doctors had told me that the chances of either of my children inheriting Factor V Leiden from me was slim to none, and that both getting was almost statistically improbable, and they both did). But after a four inch clot came out one morning, I threw in the towel and told myself to get a grip on my fears and do what needed to be done for my son.

He was a trooper at the blood draw but scared none the less. Children naturally fear if they lose blood or blood is taken that they will not have enough blood left in their body. Oh, it hurts to see your child in fear and hurts a little more to know that your decision as a parent caused it.

We did it last Thursday so the results were in when I saw my PCP on Friday. Much to my relief, nothing was terribly askew and nothing hinted of leakemia. So next is an ENT, who he will see next week. Poor baby.....

Then there is our dog, Lucky. When we got home from our overnight in Idaho two weeks ago (read on for details), we has really limping. By the next day he could put no weight on his left hind leg. Once again I threw in the towel and took him to the vet. (Going to the vet always signals a big bill in my mind.) $150 later I am told he has either torn or blown his ACL. For a small fee of $450 we could get x-rays to confirm that. Then start meds, then repeat $450 x-ray series. Then most likely a $3000 surgery. They graciously allowed me to skip x-rays and start meds then come back for a re-check. For the next two weeks to come, Lucky needed his meds twice a day, had to stay inside, must go out on a leash to do his business, and could not run, jump, play, etc. At least I have made it through the first week and he does seem somewhat better.

Our cat, Pepper, also has a chronic problem. I won't bore you with the whole story but I threw that towel in the next day. We only get charged for a re-check but she now needs a special compound medication. It is ready the next day at the compound pharmacy. I am sure there is a mistake when I pick it up. Nope. But she doesn't get much better so I am to pick up a new compound medicine for her tomorrow.

So much medical crap easily rocks the stability in a family. So I am literally praying for everyone in my family regarding their treatments and follow-ups. If you have time, please throw in a quick one when you pray. The edge is within view.....

PCP

2010-02-15T03:58:00.000-08:00

Okay, just a couple of more holes for me to fill in on the latest in the medical front.

Last Friday I saw my Primary Care Provider (PCP), who I see at least once a month. This scheduled monthly visit allows me to work with a terrific doctor (Love you, Dr. LaSalle!), who follows up on everything and essentially coordinated my care. She allows me to take care of alot of things by phone with her, which I greatly appreciate. But monthly face-to face is very helpful.

Interestingly, one of the main things she does for me is be my insurance coordinator. I cannot see a specialist, get anything other than a routine tes, and even think of a surgery or procedure without advanced authoriztion from my insurance company. Being my PCP and having to deal with my insurance company is no small task. Yet she keeps me, and cares about me. We have even become friends of sorts. Our children attend each other's birthday parties. She is a good woman professionally and personally.

Okay, back to last Friday. We go over the results of my way-too-many recent tests. We cover the refills I need. We discuss the notes that my Specialists have sent. We review my mental health (A new post to come). Finally I ask her to check my surgery incision because it is bothering me.

It is infected. Not good news for anyone but as an IS (Immunosuppressed) person, this news is scary. Believe it or not, a simple infection can possibly kill an IS patient. I go to the pharmacy on the way home (I am there at least once a week) and pick up my heavy-duty antibiotic.

That night the area is really hurting me. I take off the dressing to look and it has ripped about half open. Uh oh. I put a new dressing on and decide to think about it.Maybe it will go away if I don't think about it. Saturday morning I call the breast surgeon on call and you probably can guess what she said. I ignore the instructions, go to John Paul's baseketball game, hang out with the fam, and head off to get a haircut and then go to Mass. By the time I get to the hair salon, I am REALLY hurting. I go to the bathroom, peel the dressing back, and now it is totally open. And icky stuff coming out. I skip the haircut and call my Catholic sponsor Tamme ( a great story to post later, and it's not the AA type of sponsor) and tell her I won't make it.

I go home and hang out, watch movies, suffer and worry.

Sunday was a long day.

I see my breast surgeon at 1:00pm today. I don't know if I can sleep anymore, which is not that unusual in itself, but I am seriously hurting. I have developed a significant aversion to hospitals and avoid going there, even the ER, if at all possible. Who doesn't right?

I will probably get in trouble. It's not the first time......

GOOD NEWS!!

2010-02-13T10:12:00.000-08:00

Yesterday I found out that the pathology from the breast nodule removal was NEGATIVE!! As my Aunt Sue said, "Sometimes Negative is good!" Ah, I am savoring this success and step in the right direction. Congrats to me and to all of you behind me!

Some of the test results are also back from the BMB. So far, so good. At this point I am waiting on a very specialized test to detect the presence of the Philadelphia chromosone. If that is there, then the leukemia is around the corner. If not..... A girl can dream, can't she?

I have also undergone a bizillion tests in preparation for my Seattle check-up. While they are "normal" as for a non-transplant person, they are "normal" for me for the most part. A few have been disconcerting and we'll be game-planning in Seattle. But no crisis. Hooray!

I had a substantial improvement in my Lung Function test. For what it's worth, I went from a score of 50 to a 74. 80 is the normal range. Holy cow! More good news!

I am looking forward to my medical schedule (which is also most of my social schedule, unfortunately) slowing down. I have had up to three appointments a day. It is also rather expensive with co-pays and over-allowables. Someday I will enjoy not being such a complete financial drain on my family. I plan on writing a post about my average monthly medical costs someday. Some of you have mentioned that you are curious as to what it costs to be me. Expensive sums it up. But better than dead.

Another progress report is that I am now down to 38 pills a day. This is 20 less than immediately post-transplant. And I am line-free, so good-bye PICC's and Hickman's.

Finally, I have successfully gained five pounds back. I am not up to 97!

I know I said finally, but I would like to close by thanking all of you who have prayed, supported, and helped me and my family through thios latest round of medical events. I literally couldn't do it without you!

Tick tock, tick tock....

2010-02-13T10:08:00.000-08:00

I was doing the tick tock, tick tock leading up to the BMB and surgery. I had several days of time in the present, then back to the tick tock, tick, tock of waiting for the results. It sometimes seems I am always in a countdown to some medical issue or the waiting game for results. I dream of not having this cycle at all and am hopeful that after my Seattle trip that there will be more time inbetween.

And Off We Went

2010-02-13T08:04:00.000-08:00

The day after surgery was a BIG one, long planned and much anticipated. John Paul played in his first official basketball game. And it was a double header. He and his team, The Orange Beavers (kind of like what all the first graders' permanent front teeth look like right now) did a terrific job! It is interesting to me how the refs basically let things move on as long as the players are in motion and not heinously out of bounds. No scores are kept but everyone watching is taking mental note. It is too funny how competitive we are as parents, checking our players out to see if they have a "future". Some other teams were even keeping their own stats. Of first graders. Crazy!

We hightailed it after the game over to Idaho and to Triple Play in Hayden. It is a pretty cool indoor water park with attached bowling, laser tag, putt-putt, and arcade. It is also oh so conveniently attached to a hotel..... We get checked in and off to the party room to celebrate Gabriel's 5th birthday.

Keep in mind this takes some significant navigating for me. Because I am on immunosuppressants to prevent rejection, large crowded places, especially full of kids, is not on my approved activity list. But some things are just worth throwing caution to the wind, right? So a quick in and then a quick out after pizza, ice cream cake, and gifts. I would have had to spend the rest of the day in the hotel room anyways because of "Germs". So I'm back in the room, hiding from kids and people with germs, ice packing my boob surgery site. I take my good times on the road....

Craig went with the boys to join the others in the water park. They had a great time as expected. I am naturally jealous but at the same time very pleased that they had so much fun.

I am up and down all night, the usual for me, plus some extra with the surgery discomfort. I think I was so pissed and irritated that I had to have the surgery that I forgot I was having surgery. If that makes any sense. Surgery hurts.

Free hot breakfast, with lots of kids. It's not so crowded if you are there at 6:00 am when they open. We immunosuppressed people know all these tricks. BUT....we immunosuppressed people are not allowed to eat mass produced food, that is sitting out where people can put their germs in them, and sitting for who knows how long at possibily the wrong temperatures. Huge danger zone! But I was hungry, it was free, and I needed to take another pain pill.

Next we get over to Kootenai Medical Center to see Keri and meet Liam. Children, of course, are not allowed to visit in the hospital, so Craig and I took turns going in. My turn involves breaking my immunosuppressed rules, again, by even entering the hospital. You would be amazed at how many germs are in hospitals. Not just the sick patients. So hand sanitizer in hand, mask on, I go up to Maternity. I am promptly stopped as the nurse thinks I am sick and she is going to kick me out. I explain the situation and the she lectures me about being in the hospital "with my condition". Thanks for the concern.

I must wear the mask around the baby but I did break the "three feet" rule. I did not touch the baby or hold the baby. These particular rules are derived from neither I nor the baby have an immune systems. Neither of us have our vaccinations yet. We are at present a two-way germ infection. But I am looking forward to breaking those rules too someday.

Keri is beautiful. The baby is beautiful. And both are doing well. To my surprise, I cried when I met Liam and saw Keri holding him. It triggered a cascade of emotions.

On our way back to Spokane, we stopped in Spokane Valley for the boys to attend a birthday party at Chuck E. Cheese. Okay, I give in on this one. No way, no how. A stay in the car while Craig takes the kids in. But.... that morning Brennan woke up sick with a cold. John Paul had a great time.

Now I have to avoid my own child who has LOTS of icky germs. And as a Mom, all you want to do is love on them and console and comfort. Ugh, this is all so hard! He ended up home from school the next day too. And then the day after that Craig was home sick with the cold. Talk about having to isolate and avoid.... All the standard immunosuppressed rituals began and continued. I won't bore you with it, but it's quite an undertaking.

The super Bowl took up the rest of the afternoon. GO SAINTS!!!!!!

Good news is that we are all healthy now.

February 5 Was A Busy Day!

2010-02-13T07:59:00.000-08:00

Two of my dearest friends already had Friday, February 5 reserved! I certainly wasn't going to allow a little surgery to get in the way!

I am pleased to share with you that Liam Garr-Coles entered this world at 9:00 am that day. Keri gave birth via c-section to a handsome and healthy baby boy. My sincerest congrats go out to Keri, Gordy, and their daughter, now a big sister, Jessi. Although I didn't get to visit Keri and Liam until later, it was a day of celebration.

February 5 is also the birthday of the son of another one of my best friends, Belinda. Gabriel turned 5 that day, now sharing Liam's birthday.

Many blessings to both families!

And That Was Only Thursday....

2010-02-13T07:52:00.000-08:00

Why not get all the suffering done at one time? So the day after my BMB, I had surgery. Long story short, I had found some nodules next to my mastectomy scar, in the area my original breast cancer was. A couple of doctor appointments and an uncertain ultrasound later, I was headed off to have the nodules removed.

The surgery time was pushed back several times, but late Friday afternoon my breast surgeon (kind of weird when one no longer has breasts) created a new incision and removed the nodules. Unlike the day before, they had the meds to push my blood pressure up and I remember none of it and escaped the apin. Thank You Dr. Anesthesiologist!

Again, after the requesite juice, toast, pee, and IV removal, I was on my way. No pain at all. Until all the local wore off a few hours later...

Lots of ice packs and a couple of pain pills over the next few days. But they were good days and worth not following doctors orders to take it easy, right?

What Does One Wear?

2010-02-13T05:16:00.001-08:00

Oh, I forgot to tell you about an interesting dilema. I always struggle with what to wear to BMB's and other tests and procedures. "Comfy Clothes" are required. But does that mean sweats? Yoga pants? Old jeans? Is this for my comfort or so they can get me dressed more quickly and out the door, freeing space for the next patient?

This time I wore my black Nike yoga pants, my black Nike wicking shirt, and my white Danskin zip hoodie. White socks with black sneakers. Thanks, Denise, for this comfy outfit!

But Life Does Go On

2010-02-13T04:55:00.000-08:00

So I didn't stay "Closed" for long.... Still just as stubborn, just as determined that I can cut corners, cheat on the rules, do it my way, etc..... Just because I am in the midst of a medical event or crisis, life does go on. And I want to be a part of it!

So, going back a bit. Bone Marrow Biopsy. John Paul decided that morning that he really wanted to come with us and see where I was going, what was going on there, who did what, etc. So I called and got permission for him to come. The rules for the Chemo Suite, where the bone marrow biopsy procedure room is, are that no children under the age of 12 are permitted. So long ago, I embellished this a bit to tell the boys that no children under 12 were allowed at the Oncology office. Seemed like a good idea to me. I really don't think they even need to see all the patients, in varying forms of despair and illness, in the waiting room. And the patients don't need my kids staring at them or making a ruckus, as boys tend to do.

The Chemo Suite is this mysterious place off the waiting room. The doors are always closed until someone comes out and ominously calls your name. It's not fun back there. You know you are in for it as you pass through the doorway. Blue suits galore. (In Sally Land and the cancer world, the blue suit means you are about to get drugs to almost kill you. Chemo+blue suit.)

So John Paul is allowed back with me as I settled in to my pre-procedure cancer suite treatment chair. (Being back in these chairs always turns up the anxiety a notch. I have already spent too much time in them. I did all my breast cancer chemo in them. I tanked out in September in one of them and left the Chemo Suite on a gurney for a joyful ambulance ride to the hospital. Well, that's another story.) Quickly I am surrounded by a couple of nurses and a couple of lab people. An IV needs to be started, so my arm is hot-packed to get a compliant vein. (I only have one arm to choose from as my other is off limits due to node removal with my mastectomy.) John Paul is rapidly overwhelmed. So when the head nurse says he can't stay (despite permission to do so), this is not a bad thing. He and Craig go off to the waiting room to wait for me to do my thing. Five minutes later John Paul announces he is ready to go back to school. Craig takes him.

I am proud of him to have the courage to go and to want to see what he needed to see. It seems part of his jouney that he needed to know, needed to see a little of where I am always going. But school is a far better place!

Anyways, so IV is in, then 20 plus vials of blood drawn. This is a part of the tests past the ying-yang that I am going through in preparation for my Seattle trip. They are testing EVERYTHING it seems. Then there is a monthly CMV test kit (CMV is a virus that I got from my donor. Don't panic: I am fine.) Then there is the quarterly Respiratory Study I agreed to participate in. Nasal swabs and throat swabs. I prefer to do this myself. Okay, now we are ready to prep for Biopsy.

Transfer into BMB Procedure room. Questions, answers, blood pressure cuff on ankle (can't use arms due to mastectomy), my repeating I would like enough drugs so it doesn't hurt and so I won't remember it. Heart monitor on. Nurse is ready. Lab techs in to open and prep collection kit. Petri dishes, slides, tubes. REALLY HUGE AND LONG NEEDLE prepped. Anxiety brewing.

Then we wait. I read a trash mag while laying on my stomach.

Doctor is ready. I get my drugs and BMB begins. My blood pressure is dropping so drugs stop. I beg for the drugs or for the doctor to stop. I get neither. Pride is gone and I am now crying from pain. I HATE BMB's!

They get their marrow. They get their chunk of bone. (This is all done on your hip bone in your lower back.) I am still crying and want to go home.

I am thanking God that John Paul is not here. Bad decision on my part.

I drink my obligatory juice. I eat my obligatory crackers. I pee. See ya.

And Here We Go

2010-02-04T05:41:00.000-08:00

I officially am "Closed" starting this morning. My bone marrow biopsy is at 11:00 a.m. I always choose to have sedation which makes a rather unpleasant procedure much more tolerable. When I had my first one, on July 11, 2008, at my six week breast cancer post-chemo follow-up visit, it was awful. A huge long needle is inserted through the hip bone to extract both marrow and a piece of bone. It is painful and the tugging sensation is enough to put me over the edge. Why be aware of it, why feel it all and remember it, when sedation is available? My hat is off to the troopers who can do it.

Today I add a new circle scar to the collection I am gathering on my hips. "Right or left?", they will ask. I think Left today.

BMB's naturally cause me a fair amount of anxiety because they are both icky as well as diagnostic of where my leukemia status is. It takes about a week to get all the test results in. The marrow is analyzed on a cellular and molecular level so there are a lot of tests performed on the samples. The tests have very fancy names.

So The Waiting Game begins yet again....

This BMB is in preparation for my One Year Anniversary of Transplant. Can you believe that?! I will write more about this later but I am officially preparing for my Anniversary Trip to Seattle in March. So in addition to the BMB, they will draw about 15 tubes of blood today for a zillion of tests that Seattle has ordered as well. So I am fasting today too.

So in addition to being officially "Closed" I am also officially "Nervous" and officially "Goofy" from sedation today and anesthesia with surgery tomorrow. Let the good times roll!

The Clock Is Ticking

2010-02-02T07:05:00.000-08:00

The Surgery Countdown has hit me hard. I conveniently forgot I have my Bone Marrow Biopsy on Thursday, so I will be down for the count after 11:00 am...... So what can I cram into today and tomorrow? What is most important?

Ah, the eternal question. It is difficult for me to decipher what is important versus what is priority. It all snowballs into that constant sense of being WAY far behind and disorganized.

I am not writing well right now. Be back later.....

The Staircase

2010-02-02T07:02:00.000-08:00

"Faith is taking the first step even when you don't see the whole staircase."
Martin Luther King, Jr.

Have you ever been to the Winchester Mystery House in San Jose, CA? If you have, I think this is my destiny!

Residual Breast Tissue Lumps

2010-02-01T14:36:00.000-08:00

So when I went to my GYN appointment for the regularly scheduled colpo, I mentioned to my doctor (Highly recommend him: Dr. Shawn Barrong at Northwest OBGYN. His nurse, Denise, also rocks! They delivered both my beautiful boys.) that I was feeling some lumps where my original breast cancer was. My theory was that I had lost so much weight that I was feeling scar tissue that had always been there but that I just couldn't feel.

His response after palpating the area was that I should go back to my surgeon. He, unfortunately, retired last year (Dr. Cammack, I will always be a fan!). So Dr. Barrong ordered an ultrasound. My busy schedule over the next few days (yes, really) resulted in my having it done mid-week the next week. I lucked out and got a breast imaging specialist, who said he did not think it was scar tissue or fat. Frankly he didn't know what it was. But with my history, blah, blah, blah, I should just get the nodules taken out.

So, back to the Oncology Sort of Afternoon, the doctor says I should go see Dr. Martinez, a Breast Surgeon, and that she will call and get me in. Less that 48 hours later, I am in a huge, albeit nifty, robe at my new surgeon's office. We agreed that it's better to just get the nodules out, whatever they are. They will need to come out before reconstruction surgery regardless.

Surgery is this Friday, February 5. Ugh.

I am going to skip my feelings about all this for now, but basically I am disgusted. Perhaps I will feel more expressive later.

So now I am to begin all the preparations that need to take place. I kind of have developed my own "Getting Ready for Medical Crisis" checklist, from grocery shopping to changing linens, to school rides and more. Thank you, in advance, to all of you who will undoubtedly be there to help us out once again.

Craig and I know the drill. We have told the boys that it is a surgery to help get ready for my new boobs. They think it's funny......

An Oncology Sort of Afternoon

2010-02-01T14:27:00.000-08:00

I think I left off in the middle of the day last Monday.

So I came back to Spokane from the Pain Management Clinic in Coeur d'Alene, Idaho, for my afternoon appointment with my Oncologist. These appointments do tend to be either a morning or afternoon event, in "expect to be there for as long as it takes." And this one was quite the appointment! First there was my colposcopy results to mull over. Then my most recent hospital visit earlier this month to discuss. Medication lists were updated and necessary refills/adjustment determined. And since I am ignoring the colpo/gyn problems for now, there were still two huge items on the agenda:

1. Residual breast tissue lumps

2. Transplant anniversary trip to Seattle

And these two weighty items get their own posts, my friends.

Other than that, it was a day like any other day......

John Paul's First Gig

2010-02-01T14:11:00.000-08:00

My handsome and reverent boy is on the home page for his school, All Saints. I guess this is his first gig/photo op. How proud am I?!

Take a peek if you have time, at www.allsaintsspokane.org

(I tried to post a link with no success, so I leave the work to you!)

I do have to say, all kidding aside, John Paul's spritual development constantly amazes me. His journey has become a part of my journey, and he inspires me daily in his knowledge and thirst for more.

The Pain Management Clinic Experience

2010-01-28T05:24:00.000-08:00

I mentioned in two posts ago that I had gone over to Idaho to the Pain Management Clinic. Interestingly, it is the only clinic, and the only pain management doctor, in our entire area.

I have learned how difficult, sensitive, and sometimes touchy the subject and treatment of pain is. Doctors and other providers are constantly vigilant for pain med junkies. They have to be. Some people shop doctors, clinics, urgent cares, ER's, and hospitals for pain meds. They rob pharmacies, steal scrip pads, and alter scrips they legitimately get. They rob from people they know possess them (yes, a little scary). It really is pretty crazy how extensive the problem is.

Pain Management Contracts are entered between some patients and their providers to state in writing how much pain med someone can get in a certain period of time. I think that providers also have to watch their patients who are legitimately on the meds because they could turn out to really, really like them and want more and more. Even when they no longer need them.

Personally, I don't get it. Most pain meds make me nauseous or vomit. The ones that don't certainly don't make me feel euphoria. But I know some people really enjoy them and apparently get a good high. In fact, one of my best childhood friends has fought this addition since his teens.

Anyways, I always feel awkward discussing my pain and my need for pain meds. I have this strong need to not be viewed as a junkie or that I manipulate my husband's position to somehow have better access to them. And I also really don't want to become addicted.

There was also the confrontation I had with a Group Health Hospitalist during a hospital stay in September. Long story short, this yahoo thought I was a pain med seeker after I asked for a pain pill in the middle of the night. So the next day he comes in to do his visit/exam and insinuates that I was looking for a high. Asshole. Fired him, and gave the nursing staff a good laugh.

I guess this is in part why there are Pain Management Specialists. They screen out the users. They also end up dealing with people like me who all the traditional regimens are still not enough. I was apprehensive that they would just write me a scrip for 500 pills of something...... The good news is that they felt we had several options left to try, utilizing both my current opioid meds along with other medications that specifically target nerve pain. THANK YOU, THANK YOU! I was elated that there was hope. Someday, I would like to sleep more than a little here and there due to pain. I would like to be able to move throughout a normal day without restriction due to pain. And maybe someday I could add some physical activity without all the pain. My "high" would be good sleep and no pain!

Unfortunately, they did tell me that their experience with cancer patients with neuropathy (that's what causes all my pain) can be rocky. It can take a lot of fine-tuning. And sometimes they can reach improvement but not total control of the pain. So they ask you to keep in mind that down the road they may have to find a more opiate-based regimen. And once again, a doctor looked me in the eye, with that serious and grim face, and delivered his clincher that the pain often never gets better or goes away. Huh. I'll go with the above paragraph, thany you very much!

I finally gave up trying to sleep tonight but I am optimistic that there ideas can make some big improvements. I like optimism and I like hope. And I LOVE good news!

Time To Update

2010-01-28T05:22:00.000-08:00

Wow, it amazes me that I started this blog so long ago. A lot of entries, a lot of "stuff". I will be updating my page in the near future. Any suggestions?

We Each Have A Story

2010-01-26T09:52:00.000-08:00

I learned a valuable lesson yesterday. I was at my intake appointment at Pain Management of North Idaho, over in Coeur d'Alene (the only pain management doctor/clinic in the entire Greater Spokane area). During a very long assessment with the Nurse Practioner, she asked a lot of questions about my cancers and bone marrow transplant. Since I have the answers down pat, I was just rolling off my standard replies and explanations. It really wasn't until the end of the appointment, and hour and a half later, that it really hit me that she had said that her brother had not survived his transplant. Huh.

So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.

I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.

So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.

I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!

So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."

Lesson learned. The hard way.

Cup of Noodles

2010-01-22T16:48:00.000-08:00

We recently learned what happens if you put a Cup of Noodles, with all its packaging/wrapping, in the microwave, without water, for three minutes. You get a fire with toxic smoke, lights and sirens with a firetruck and paramedic rig, and a number of young strapping firemen.....

They have some cool equipment though, kind of like the movies. One device is pointed towards the fire and registers all the temperatures.

The nice firemen remove the smoldering Cup of Noodles and then remove the microwave.

It smells really bad.

Then you can either leave for several hours for the house to air out or let them use their smoke machines, which unfortunately leaves carbon monoxide behind. We "evacuated".

Lots of neighbors call to offer their help with the boys because they think the ambulance is here for me. But it's good to know they care.

Ultimately John Paul's snack efforts were demonstrative of his maturity to get an adult if there is smoke or fire and his knowledge that 911 summons the Fire Department. He was going to stop, drop, and roll down the hallway to tell me about the smoke. There is no way I could have maturely handled that!

And 2010?

2010-01-22T12:34:00.000-08:00

A belated Happy New Year to everyone! I write you hoping that you all had a blessed holiday season. After a very hectic December and a rather full start to 2010, I am pledged to one of my goals for the year: to get back in the saddle and BLOG!

It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.

First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!

So True, So True

2009-11-18T16:31:00.000-08:00

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ----Mother Teresa

The 1st Grade

2009-11-18T14:23:00.000-08:00

It seems absolutely IMPOSSIBLE that John Paul is in 1st Grade this year! He continues at All Saints Catholic School and is extremely proud to be in a "grade". No more "letter classes", ie. P3, P4, or K. He is already counting years to high school, when he can play football, when he can go to Gonzaga......

Craig and I are incredibly proud of how well he is doing in school. With all that has gone on in his life, it's easy to worry that he will not meet his potential or perhaps will act out. His Progress Report and Report Card reflect that he is adjusting and finding his groove.

He has found a good fit with his teacher, Miss Vogel, again this year. His seat has been moved a few times....So I can definitely say he is enjoying his classmates! He misses some of his buddies that are in the other 1st grade classroom, but they seems adept at finding each other at recess or otherwise.

A special thank you to All Saints, who has helped and supported our family and continues to ensure that our boys receive the education we hoped for them. The teachers, staff, and families have been wonderful. We truly feel a part of the community.

The pics are from his first day.

P.S. He is finally getting one of his front teeth.....

"Just Thinking About Math"

2009-11-18T14:12:00.000-08:00

I couldn't write about some of the many special people in my life without including a story about one of my boys. John Paul is turning seven (How did that happen?!) next month. He is quite the thinker. His questions and thirst for knowledge both entertain us and scare us.

One day a few weeks ago, John Paul and I were in the car. He was being rather quiet, which is also rather unusual. So I glance in the rearview mirror a couple of times. He is gazing out the window, deep in thought. Finally I ask him if everything is okay. Then I ask what he's thinking about. His reply: "Just thinking about math."

Okay. He was silent for the next twenty minutes.

So kudos to his teacher, Miss Vogel, who has apparently made math an exciting and engaging subject.

Just thinking about math. Oh, John Paul......

My Friend, Charyl

2009-11-18T14:02:00.000-08:00

Okay, so I am behind. Again. As usual. As always.... I thought I would begin my catch-up by sharing a little about some special people in my life. Today, I will start with my friend, Charyl.

I wrote about her along time ago so the name may be familiar. Charyl is 93 years young. She is a church friend of my Aunt Marjorie and Uncle Jim in West Hills, CA. Charyl is a resident in a nursing home and embraces every activity offerred at full speed! In addition to bingo, parties, costume events (recently as Spider Woman), and visitors, she finds the time and desire to write me. About once a week. For over a year.

I have never met her. I have very definite mental pictures of her, as she writes (by typewriter) of her various activities. She sends words of wisdom, too, and often includes poems, authored by her or others. There is no doubt in my mind that Charyl's will could heal me itself!

Her unique, generous, and gracious friendship reminds me that we know not what another's journey is. Only to remember that we each have our own. And somedays, a simple guesture can genuinely affect how another faces the day. Thank you, Charyl, for sharing.

Kathy Howard

2009-10-28T15:04:00.000-07:00

Yesterday was the anniversary of my friend's, Kathy Howard, bone marrow transplant. She is never far from my mind and is always in my prayers. Unfortunately, her transplant was unsuccessful and she passed away in March the following year.

Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.

Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.

We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.

Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.

She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.

She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.

Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.

Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.

She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.

My Body Over the Past 24 Hours

2009-10-28T14:44:00.000-07:00

Yesterday was a really hard day for me. I would have written about it all yesterday, but things just kept coming. So, I have missed a day of writing and getting you caught up. I was actually really impressed that so many of you are still checking my blog and knew I had written. And without an email inviting you back to SallyLand!

I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)

So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.

Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.

Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.

If I don't pee by the morning, the world ends, apparently.

Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.

So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.

Sacred Heart Frequent Flier Miles

2009-10-26T10:18:00.000-07:00

What a month it has been! When Craig and I were in Seattle in September (another story), I had a constant headache. As I am not a headachey person, I assumed it was stress and began an around the clock Tylenol regimen.

Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.

So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.

Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....

Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.

By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.

Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.

PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.

So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.

So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......

Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.

Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.

So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.

Can I Use The Same Post Twice?

2009-10-26T10:11:00.000-07:00

Here I am, finally, connected to the internet, logged in to my blog, trying to figure out where to start. Essentially, I would like to repeat all the sentiment of my most recent post, even though it was way too long ago.

Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....

I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.

Thank you for sticking with me. I AM still here.

Why I Didn't Write For So Long

2009-07-31T03:19:00.000-07:00

This is perhaps the hardest entry I have ever written. The bottom line is I can't really explain why I didn't blog for so long. My silence also included a complete drop out from all communications. Phone calls, email, Facebook, letters. Literally everything. Pretty much if you weren't literally with me, I was succeeding in disappearing.

My best explanation is that NOTHING went or turned out as I planned. I had intended to blog all the way through transplant and the Seattle Cancer Care Alliance experience. I do have lots of pictures, stories, and thoughts to share. I just haven't figured out HOW. Each day I would be sure the next day would be better and then I would write. I felt guilty every day for not writing. Then I thought I would get back on track once I got home. Again, nothing has gone as I expected it would.

My second explanation is that I that I lost my "groove". I didn't feel the creative urge to write. It just hasn't been there. It has been a little scary feeling that way. It seems I always have something to say. I did have lots to say, just not the skills to say it.

I also wanted to write with a positive and upbeat spirit. Yet that spirit remains elusive. I couldn't handle writing about the challenges rather than reporting successes. I feel this weird responsibility to end the transplant story with a smile, with good news, with a conclusion. Without the prayers, emotional support, and financial support from all of you, I wouldn't have been able to have the transplant in the first place. I want to give back to you only the good. Does this make sense?

I am also ashamed that I am unable just to celebrate the gift of life I received from a total stranger. I feel ashamed that I can't just be grateful, not mired in all the other crap.

I also have not been well most of the time. I don't know that anyone really wants to read about that.

Ultimately I haven't known how to explain to others what I can't understand myself. Again, it feels like if a person literally hasn't been there with me that I have no way to describe it. This transplant journey has kicked my ass. Our family has been turned upside down and shaken. The words elude me to adequately describe it all. So I guess with not realizing it, at least at first, I just hid away. And waited for some magic to come. It's still not here but I am giving it a shot anyways.

I end with a sincere apology to those who I have offended by not communicating sooner. The fact that it has totally and indescribably overwhelmed me is not a fair outcome for those of you who have been there for me. I owed you better than that. I pledged to you that I would try to take you with me on my journey, and I failed to do that. Again, I will try to honor my commitment to write, including going back in time and sharing the best I can. I've got some pretty amazing pictures to post as well.

I am sorry.

Now that I have stumbled all over myself and then offered an inept apology, I am logging off to get sick. This may take awhile or not. I would also benefir from some sleep, my goal if I feel a little better. I may be back in a few, or maybe tomorrow, or maybe a week from now. Until then......

Cancer Is a Small World After All, Part I

2009-07-31T02:12:00.000-07:00

I never really knew what a small world my cancer world was. There was me in the middle, of course. (Egocentric, no?) Then there were my family members, both biological and through marriage, who have traveled their own cancer journeys, some winning and some who had succumbed from the disease. Naturally, there were others, including friends, acquaintances, and even strangers, whose experiences have affected me. Have you ever stopped and really thought about YOUR cancer world?

I spent last week in the hospital, on 7-South, the Oncology Ward. While I was walking the floor, a gurney carrying a woman downstairs, presumably for a test or procedure, went past me. In the flash that she went by, I thought I knew her. Then some of her family rounded the corner, accompanying her on the way downstairs. I definitely knew them. One of them stopped as she recognized me. We both kind of mumbled something to the effect of "what are you doing here?. Who knew that one can actually run in to people you know on the cancer floor?!

A few days later when I was feeling a bit better, I asked my nurse if the woman was still in the hospital and if so, would she ask her nurse if I could come visit. What is the etiquette on running into someone you know who is also a patient? This was definitely not covered in the Emily Post books I have read.

The woman told her nurse to tell my nurse to tell me that yes, I could come visit. So after I squirreled up the courage, I walked three doors down to see a friend who I didn't even know had cancer. (A very embarrassing side effect of my being a hermit and completely out-of-touch with the "outside" world.) Of course, true to herself, she was beautiful despite her battle, and even had the nerve to have eye make-up on! My IV pole with attached machines and I got seated and situated. It was now time to look her in the eye and figure out what to say. Naturally, cutting right to the bottom line, I ask, "What the Hell are you doing here?".

This super cool, super hip, successful business woman, family matriarch, who I have always admired, answered my question in her typical style. The ice broken, we had a pretty long visit for two people whose bodies are not cooperating and who frequently forget what we are talking about or what has already been said. And we had some laughs, too. Fancy seeing you here.....

My friend prefered she remain anonymous. And I am keeping the details of our conversation private. But some of you may know who she is anyways. I can confidently report that she's kicking ass as usual. And to you, my dear, if your read this, thank you for sharing and for listening. And I am here for you any time. And I apologize for not being there sooner.

One thing that really made an impression, however, was how she expressed her joy, her dreams, and her hopes. Her family has been through some pretty amazing stuff in the past year. I am so proud for her that she is not defining herself by her disease. It is clearly just a part of the big picture. My hat is off.

We also talked about another woman we both know, a former colleague of mine, Bernadette. I did not know her well, but I had truly enjoyed the homemade soup and bread she had brought me during my battle. I has also learned that she frequently inquired about me with various friends. While she was reaching out and giving to me, she herself was battling cancer and unfortunately losing the fight.

Her memorial service was held the day I was admitted to the hospital. She had begun hospice just three days before she died. I have deep regret that I was not there for her or even able to pray for her. Thank you, Bernadette, for your beautiful soul that cared about me, despite hardly knowing me, even as your cancer was ravaging your body. May God Bless you always.

Before and After Cancer Came to Town

2009-07-31T01:50:00.000-07:00

Thought I'd take a trip down memory lane, back to the defining "Before" and "After" moments of when cancer came to town. I feel a need to tell the story in its entirety. I have often referenced things simply as facts but never really offered them as full experiences. Please bear with me as I write......just trying to get it all out......

Breast cancer has been rather rampant in my family history. I've learned that this was my first "cancer identity", beginning with concern and screening. Those that went before me, and vigilant screening, perhaps saved my life. It was this perspective that allowed for my early detection. It also caused me to really think about what I would do if I were to be diagnosed with breast cancer.

I remember the day when the phone rang and the caller id indicated it was my surgeon. Just two days before I had undergone removal of a suspicious lump. When your surgeon calls on a Saturday, picking up the phone is the beginning of your "new" life. Craig and the boys were visiting our friends Keri, Gordy, and their daughter Jessi for the afternoon, so I was home alone on the mend. I sat on my bed to answer the phone. That was definitely a before and after moment. I spent the new few hours dealing, accepting, and checking my preparedness for what would come.

When my boys got home, I told Craig we needed to talk, so we went to our room, shut the door, and I prayed for a few minutes before milk was needed or somebody hit someone or looked at their brother funny. How quickly can you tell your husband that you have breast cancer? Pretty damn quick. How long can this new diagnosis make time stand still? About as long before a little guy knocks on the door. Suddenly life goes on.

I saw the surgeon Monday morning, but my treatment decisions were already made. I had already had a number of lumps removed, all on the right side, where the cancer had been found. My poor little breast was getting smaller by the year. It simply was time, for me, to say enough is enough, and move on. Take 'em! Why screw around with this? I had been blessed with a wonderful husband, had born and breastfed two beautiful children, my family was complete. Never having had an identity defined by my breasts, and actually perhaps the opposite, I was okay with my originals going. Why not trade up?

When I was off blood-thinners for the required number of days, I underwent a double mastectomy. I remember looking at my breasts while I was in pre-op and saying goodbye. I remember showing them to Craig and my best friend Jenny, both there to support me, as ALWAYS, and telling them to say goodbye. They didn't appreciate the moment as I did.....

I woke up without breasts. It was now "After" for sure.

Someday I will write about the recovery from the surgery and my boobless life. But enough for now.

In closing, I have been fortunate to have some of my friends and family ask frank and sometimes difficult questions, as sometimes, some people, would like to learn more and have felt comfortable enough to ask. I am 100% open to answering ANY question, regardless of how personal it may seem. I genuinely think this is part of my purpose: to talk and communicate the very real journey I've had. People will either want to know or not. But I am committed to getting the personal side of cancer out there. I certainly am not a clinical expert and frankly, it seems that most information out there is dry and technical. PLEASE tell me what you are curious about. Or skip the blog entries. Whatever makes you comfortable.

How Sally Got Her Groove Back

2009-07-16T06:02:00.000-07:00

Okay, so it's not back yet. And I am still completely unsure how to get it back. Or if it is even possible to get it back. I'd say it's a work in progress.

Nothing about my life has been what I "expected" since the end of February. You may have noticed that this time period is also when I stopped writing and stopped communicating. I want to tell you, my friends, my family, and all of you who have followed my journey and willed me through my transplant, that I am sorry I have not kept you updated and not responded to your efforts at keeping/getting in touch. I have intended to write on this blog every day. I just haven't known how. I am not who I used to be but haven't finished figuring out who I am. Or who I am going to be. So I humbly ask for your patience and tolerance while I go through this process.

Anyways.

I am determined to write regularly, with some current news mixed in with a trip down transplant lane. I literally have so much inisde to share with you all that I don't know where and how to start. Ignore my new posts and emails if you like. I do worry that I might exhaust you if the flood gates really open. But I NEED to tell you, as I can, about where I have been and who I am getting back. I genuinely feel that I have some things to say that need to be heard. And I also genuinely feel that until I get it all out, I can't move on.

I am so nervous that I am shaking. Learning to open up again will be difficult for me. If you can, come along for the ride. And as always, welcome to Sally Land.

Home

2009-06-18T21:51:00.000-07:00

Hello,
Sally has wanted to update the blog but feeling tired. everybody is fine and just trying to adjust to a new lifestyle. She is doing good and will update soon.
craig

Light at end of the tunnel

2009-06-05T18:07:00.000-07:00

Hello All,

The boys have no idea that in a week, their mommy will be home!

Well the end is near. No matter what I say, don't tell the boys, we want to surprise them.

The last week has been interesting. Without us even knowing, Sally has been doing discharge tests, exams, and meetings. Don't ask how, but we never knew till yesterday. To sum it all up, the bone marrow results from last week are completely negative, which is good. That means there are no traces of the leukemia in her bone marrow and is considered in remission. They (SCCA) tests confirm that she is making male cells. Weird but cool.

During the meetings etc, the bloodwork shows no damage to the kidneys or liver etc. Blood counts look great and no signs of GVHD except for a small bit in the esophagus.

She is fighting a cold right now that is lingering and kicking her butt. She forgets she has new bone marrow, white blood cells, and an immune system of a 3 month old. Like most 3 months olds, they get sick alot....which should be fun to see her get frustrated over that. She is taking antibiotics and resting.

The stomach issues have drastically decreased since stopping the pain meds they had her junked up on. All narcotics slow gastric motility, (makes stomach empty slowly) and cause constipation---which in turns slows down the stomach. so eating a meal and letting it sit in the stomach for several hours was causing her pain.

Yesterday we found out her discharge date is June 10th. So again, we want to surprise the boys either on Thursday or Friday.

It has been a long, challenging, frustrating, interesting, and yet joyful journey. Those who have helped be a cargiver for Sally, visited Sally and/or I, watched the boys, picked up the boys for school and activities, allowed me to vent, sent cards, picked and dropped me off at airport, watched the house, fed the pets, mowed the yard, helped upgrade the house, allowed me time off work, let us borrow things for the apartment, supported us in any fashion needed, donated money for the journey, and gave love and prayers to our family, I want to say THANK YOU!. It was difficult to leave behind aspects of our lives that we love and need. But without all of you it could not have been done. THANK YOU again.

It will still take 6-9 months to get her full immune system and energy back to normal, but will take it day by day

Craig

Nothing too new,.

2009-06-02T15:04:00.000-07:00

Hello,
Latest update is boring but good. Sally is still having some stomach issues with nausea. Slowly getting better. The doctors are trying a new medicine to help with stomach. She is still getting up at night with pain and nausea, but again is slowly getting better. she is starting her exit visits and tests. Everything is looking great in that regards. Go home date is still the weekend of the 13th of June.

I think she will improve greatly once out of the apartment and back home. Nothing helps more than being at home.

We are having busy days with lack of sleep and tests all day long. Sorry for the delay in updates. Keri and Jenny came over for the weekend and all 3 had a good time. I went home for the weekend and caught up on a few things and yes, snuck out fishing. I got more mosquito bites than fish bites.

Boys are doing great. John Paul has lost both of his front teeth after I left. So not sure if Misty is beating the kids or not. Just joking.

Will update in a few days after the final bone marrow results come back. Take care

Craig

Thank You

2009-05-25T18:54:00.000-07:00

Also wanted to thank Mrs. Thielman for bringing the boys to Seattle and back for the weekend. I forgot to mention that in the last blog. We greatly appreciate it.