Tuesday, November 8, 2011

Full Circle

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!!

Monday, November 7, 2011

Four Year Anniversary

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.

Thursday, October 27, 2011

Remembering Kathy

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.

Saturday, October 22, 2011

My Donor Wants to Know Me

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.

Thursday, October 20, 2011

Fire Safety, Part II

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.

Monday, October 17, 2011

Fall Sports

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!

Friday, October 14, 2011

Still In Remission!

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!

Thursday, October 13, 2011

Immunology: One Step Forward, Two Steps Back

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!

Tuesday, October 11, 2011

Back to School

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.

Monday, August 15, 2011

Good Luck?

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!!)

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!

Wednesday, August 3, 2011

Time Off

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!

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!!!

Sunday, July 24, 2011

Posting Decisions

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?

Monday, July 11, 2011

My Medical Status- The Elephant in the Room

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.

Sunday, July 10, 2011

A Red Letter Day!

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!

Monday, June 27, 2011

Another Restless Night

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.

Thursday, June 23, 2011

School's Out!

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!!

Tuesday, June 7, 2011

New Life

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

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.

Monday, May 30, 2011

Of Course, When I Am Ready

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!

Saturday, May 28, 2011

They Really Were Serious

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?

Monday, January 17, 2011

A Belated Happy New Year's

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!