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!

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!!!

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?

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.

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!

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.

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!!

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.

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!

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?

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!

In the Middle of the Night

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

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

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

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

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

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

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

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

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!

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?

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.