I told her how 2 and 1/2 years ago, the blood-makers in my bones went haywire and started shooting out undercooked blood cells that weren't ready to do their work protecting me from getting sick, and that soon I had so many of the un-ready blood cells that there was no room for my working blood cells, and so if I got sick, I wouldn't be able to get better. Luckily, some nice person had some extra blood-makers in her baby's old umbilical cord that I could use, so the doctors destroyed all of my blood-makers and put that person's baby's in. The hard part was that I was still hooked up to my blood-makers while they were being destroyed, so the rest of me got a little destroyed, too. And although I mostly got better, it's still a little hard because the new blood-makers are still getting settled in, which is why mommy has to take pills and wear hats and not eat avocados until they get comfortable. They are, after all, from Australia, so they are a long way from home and haven't really gotten used to culture here yet.
She was quiet for awhile after that, which I assumed to mean that she had actually listened to me and was processing this new information. Her silence gave me some time to process what I had just told her, too. I realized that my whole cancer story actually was:
1) just that simple, and
2) just that absurd.
Also, if you're just joining us here on this blog, that story:
3) pretty much brings you up to speed.
To be quite honest, I didn't really plan on even acknowledging my 2-year transplant birthday this year. I believe I have explained before that for me, milestones are more event-based rather than date-based. Case in point: on September 22nd, Brett, Luna and I went to the park and played Frisbee. Then we went home. If, say, I had died a couple of years ago, I would not have had that particular opportunity. So that is a milestone, but really doesn't have anything to do with September 22 per se. Does that sound gloomy? It really isn't, if you think about it.
However, my 2-year transplant birthday DID mean that I was invited back to the Hutch in Seattle for my 2-year transplant follow-up, and I suppose that has everything to do with September 22nd. So... I don't really know where that leaves me and my elaborate philosophies. Anyway.
My paperwork arrived from Seattle a few weeks ago. Just the sight of the hefty packet-- with my name on it-- made my heart sink. Frankly, I am just not too fond of hefty packets of documents from medical institutions anymore. The anxiety-inducing contents included a letter announcing that I had been scheduled for 2 days in Seattle, information on lodging and whatnot, some stuff for my doctor here in Sacramento, a detailed patient questionnaire asking how I'm doing in various areas of my life, and a couple of pages of "best of" comments from last year's patient questionnaire Naturally, my comment from last year (which was basically me complaining about the shortcomings of the "best of" comments from the previous year and how the questionnaire could be improved) was featured. I am equal parts proud that my concerns were acknowledged (and that this year's comments were improved accordingly), and annoyed at what a preachy know-it-all I can be.
But let me tell you about this questionnaire. You might be feeling okay, pretty good even, when you receive it. Then it's all, "Have you felt tired in the past week?" "Are you more tired now than before your transplant?" "Are you concerned about your post-transplant appearance?" "Do you ever feel like you are a burden to your friends and family?" "Can you do all the things you could do before your diagnosis?" And you're like, "Well, gee, sometimes I'm tired... and my face is kind of different now...when you put it that way, maybe I am a burden... no, there's lots of things I don't do anymore..." and by the end, you're not doing near as well as you thought you were. In fact, you're doing pretty awful. This realization of melancholy may or may not stay with you all the way to the part of the questionnaire where you get to add your personal comments... which, if you're lucky, will be shared with the rest of the patient community in next year's trauma-packet. They try to get a good range of experiences in from, "I am 10 years post-transplant and have 15 grandchildren and run triathlons once or twice a month!" to "I have had pretty bad GVHD for 8 years now and I sometimes wonder if I should ever have had this stupid transplant." So, it is in the midst of this emotional roller coaster that you confirm your availability for the follow-up appointments and start making your travel plans to Seattle.
Now, all that background is a little out-of-proportion with the drama of the actual visit (of which there was little to none, but I will still make sound like there was just for effect). First thing, I showed up bright and early for my blood draw. There should really be another name for it when they are taking about 20 vials of blood, to properly convey the magnitude. Blood larceny? Blood exploitation? Anyway, it was fine and only required two punctures and a nice conversation with the boy from Alabama that drew my blood. Who I'm pretty sure could not have been much older than 15. After that, I had a pulmonary function test to check out the ol' wind bags. I'm not sure how to describe the breathing tests except that you are asked to kind of bring yourself to the edge of suffocation, and then force a bunch of air in or out or whatever, then hold your breath, etc. This is all through your mouth, I might add. Which seems strangely irrelevant because who regularly breathes through their mouth if they can avoid it? By the way, if you do regularly breathe through your mouth, stop it. You're driving everyone around you crazy. Anyway, the test ended just as I was on the verge of fainting or vomiting or both. And the results were: I am still breathing, and pretty much the same amount as last year. Which is good to know.
After that came the bone density, or DEXA scan. I never seem to escape the slightly awkward moment of telling the (ALWAYS male) technician that yes, my bra does have metal in it, and yes, I will remove it and no, you don't have to pull the curtain because every woman knows how to remove her bra without taking her shirt off. They always pull the curtain anyway. The cool thing about the DEXA is that the tech usually tells me the results right then and there without waiting for an attending MD to come and interpret the scan. He said that I had the same amount of barely-osteopenia in my left hip (which I have always had through my whole history of DEXA scans), but that my bone density had increased in my spine by 5%. So THAT was awesome (keep in mind that I am on prednisone still, which can cause osteoporosis. I also stopped taking calcium supplements a couple of months ago, responding to some study that linked them to heart disease, and thus being one of those people I always complain about that reacts to every study in the media and encourages the sensationalism of science). Anyway, I think I can pretty much attribute that bone gain, or whatever, to a) being out of bed more than a few hours a day for a whole year and a half, and b) yoga, to which I made a renewed commitment after my nurse practitioner from last year subtly admonished me.
Lastly, we had a meeting with the researcher that oversaw my clinical trial, Colleen Delaney and her wonderful Italian assistant. This meeting is mostly a social call, where she tells me how her research is going, and gives me the gossip about who is doing and not doing what at various other transplant centers. We also lament the under-publicized awesomeness of cord blood transplants (although she did get a word in edgewise regarding the whole Robin Roberts affair and Good luck, Robin! [Robin should really be reading this blog, don't you think?]). And she talks all kinds of science which generally makes me feel better about just about everything. Then I went back to our hotel and took a nap. But NOT before cruising the REI flagship store (which is dangerously only one block away) and scoring an $11 shirt on clearance. The shirt also gave me the opportunity to rant about the fact that it had once cost $46, so there was even that added bonus. Then I took a nap.
Day two should have been relatively simple, a general exam and consultation, and an assessment of my GVHD. The exam, although 2 hours long, was fine. I had the same nurse practitioner from last year, who I really like. She really focused on what was important, which was my newfound violent physical reaction to avocados. She refused to be convinced that I couldn't eat them anymore and proposed all sorts of plans and scenarios where I might re-evaluate my reaction or recover my tolerance of them. She put it like this: "I'm really disturbed by the fact you can't eat something so delicious." The sun-related rashes, conversely, were deemed "not too bad." The attending MD, to whom I was introduced while wearing just a bra and jeans (seriously, why does my bra seem to figure so prominently into my experiences at that place?!), agreed with that prognosis and is allowing me to try to TAPER OFF THE CYCLOSPORIN, one of my immunosuppressants. This is big, people. Wish me luck and I'm serious... I'll know if you don't. Remember, this drug is ruining my kidneys and causing me to grow sideburns. The team also questioned why I didn't use my steroid creams to treat my rashes, a question for which I had no really good explanation except for habitual martyrdom. So I'm using those again and Viola! all my rashes are clearing up.
My counts were great, my organs are all functioning, and my kidney function wasn't frowned at for once. I have 1200 lymphocytes, which is 1200 more than I usually do. I got a flu shot. Then, I foolishly celebrated all this good news with a tuna sandwich from the cafe. You may remember a similar such celebration from last year. Probably not surprisingly to anyone, the results were the same. Now, what is that definition of insanity again? I then brilliantly proceeded to take my meds on an empty(ing) stomach. Suffice it to say, I spent the rest of the day mostly in bed watching HGTV (when I wasn't in the bathroom). I guess I'll just have to consider it a tribute to the 3 months I spent doing the same thing right after transplant 2 years ago. And here we are, back to the 2 year thing again.
I guess milestones are good points of reference for measuring progress (insert sigh of defeat). I believe I can only manage a bulleted list at this point:
- Physical progress: improved in most respects (including sewing and riding a skateboard), except still lacking the ability to clear dirty dishes out of my office;
- Mental progress: focus on complex issues incredibly improved while common sense remains at embarrassingly low levels;
- Spiritual progress: comfortably evolving;
- Indulgence in nerdery: exceeding previous levels;
- Psychological progress: feel free to contact Brett directly;
- Gratitude/happiness/contentment index: absolutely reeling in it all.
Thanks for being with me, you lovely lovely lovely people.
