Friday, December 31, 2010

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.

Tuesday, December 28, 2010

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.

Saturday, December 18, 2010

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.

Saturday, November 27, 2010

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....................

Friday, November 26, 2010

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.

Monday, November 15, 2010

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?

Monday, November 8, 2010

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.............

Tuesday, October 19, 2010

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?

Monday, October 18, 2010

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

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

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

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.

Sunday, October 17, 2010

Seattle: The Final Chapter

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.

Saturday, October 16, 2010

Leaving Seattle

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.

Wednesday, September 29, 2010

The Telephone Game

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.

Thursday, September 23, 2010

"Robertson, 29"












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!

Wednesday, September 22, 2010

I Went







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.

Sunday, September 19, 2010

Going Deep

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.

Saturday, September 18, 2010

And I'm Off!

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

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.

Friday, September 17, 2010

Back to School











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

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!

Thursday, September 16, 2010

Time

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.

Wednesday, September 15, 2010

The "New" Normal

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.

Tuesday, September 14, 2010

"How Are You?"

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

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.

Monday, September 13, 2010

Ground Hog Day

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.

Sunday, September 12, 2010

Today

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.

Wednesday, May 12, 2010

Happy Belated Mother's Day!

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!

Monday, May 3, 2010

House Arrest

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.