Two.

September 22nd was my 2nd transplant birthday.  Luna had a hard time understanding this.  "How can you be only 2 years old and then 37 years old at the same time?" she demanded.  And I found myself explaining the whole transplant process to her, which I guess I've never really done.  Incidentally, we were also in the bathroom of a restaurant where we were impromptu-ly celebrating my "birthday."  Luna and I had chanced to have the bathroom to ourselves, but obviously, time was of the essence, lest we be joined by some unsuspecting restroom-user that would be shocked and horrified at the science-fiction I was laying on my 4-year-old daughter.  There was no time for the squatting-down-to-eye-level and holding-of-her-hands.  She sat on the john and I leaned against the stall.  And this was how I presented it:

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.  

The Revenge of the Blog

Do you know what's harder than blogging when you're in the throes of cancer treatment?  Blogging when you're doing relatively well (shudder).  The further I've gotten into remission (knock on wood) which has been over 2 years now (oh my lord knock on wood again), the more superstitious I have been about telling people how I'm actually doing.  I'm not really OK in that respect.

But other than that, I'm doing really, really well (but you see there is this stubbornly superstitious side of me that doesn't want to jinx anything and is knocking on wood all over the place any time I express any sort of satisfaction or optimism with life, and then there is the other side of me that knows that is ridiculous, but even that side of me lets the other side do its thing just in case).

So as I was saying, things are really great on the whole.  This is how my health situation has played out since October.  I continued the medication taper for awhile, then had to stop when my immune system continued to repeatedly throw worse and worse temper tantrums all over my face.  What happened is this: the rash would flare up all red and puffy and stinging, then it would dry up and itch and I looked all wrinkly like the Crypt Keeper, then it all would flake off and I couldn't wear black, then I would have radiant new skin for a day or two, then it would start all over again.  It would be a cycle of about 3-4 days.  At least my new cells are persistent, which is a plenty commendable trait to have if you are an immune system.  More recently, while my new cells seem to now be satisfied that my face really does belong to me, they are now testing other areas for weakness (kind of like velociraptors, you know?) such as my inner thigh, my left armpit, the insides of both elbows, my digestive system (mildly), the backs of my knees, and my neck.  So there has been some puking and itching and creams and even the purchase of MAKE-UP, if you can believe that.  Vain?  Yes.  But I figure if I've been spending hundreds dollars the past couple of years on medication that makes me grow hair on my back, I'm totally willing to indulge my vanity once in awhile.

Lately, though, the rashes haven't been bothering me that much.  I'm not sure, but it may be because things are improving (knock wood).  It is also possible that I'm just getting used to it, and/or that is was never that bad to begin with (because let's face it:  things rarely are).  The whole thing is supposed to burn itself out eventually, although no one can say when.  But they are fairly sure it will be less than 5 years :-/.  So until it goes away, I have to stay on a low dose of a few of my medicines.  Oh well.  I'll be tapering down on those a little more in June, so wish me luck.

The flip side of dealing with increased rashiness from lower doses of my meds is that I feel a lot better.  And did I mention I can go places now?  I am somewhat less immunosuppressed at lower doses of immunosuppressants (go figure), so I can fly on a plane and walk through a crowd without holding my breath and cringing (although I still sometimes do those things just in case).  I've flown once or twice a month since October to San Diego for work, and to Seattle to film an interview at the Hutch.  Please don't ask about the interview.  All information in good time.

My blood counts are very good, and often fall within normal ranges.  They flucuate, but blood cells do that, turns out.  Most blood lines are doing well, except my lymphocyte-makers seem slow on the uptake.  I mentioned this to my doctor, who said, "That's because you are taking medications that suppress them."  I hate it when the answer is humiliatingly obvious.  Anyway, I still have to have IVIG infusions every 5 weeks or so.  Interestingly enough, I get haircuts with the same frequency, which turns out to be the one inconvenient thing about having short hair.

Energy-wise, I have either forgotten how much energy it is possible for me to have, or I'm doing great.  One or the other.  Either way, I can exercise, travel, work, keep up with Luna and Brett to some extent, and engage in social/group activities and a couple of hobbies like bird-watching, playing the piano, reading and watching the Ant House we have in the kitchen.  A lot of these are fairly sedentary hobbies, but they are long-beloved, and I'm glad to have slowed down enough to realize them again.  I have been practicing yoga at home on and off, and for the past 3 weeks, have been practicing in the studio at least 3 times a week at 6:15 a.m.  In fact, I went 6 days in a row at 5:30 a.m.  Did I write that loud enough?  5:30 a.m.  The only people that get up at that hour are a couple of psycho runners I know.  YOU know who you are, ladies.  And I recommend you take the "psycho" label with a grain of salt, coming from someone that has a cabinet full of animal skulls in her living room.  Anyway, it's been the physical and mental and spiritual hurdle that yoga is intended to be.

Speaking of running, I actually ran the other day without crumpling into the dirt at the end.  Another thing that happened the other day is I remembered how much I had come to dislike running before I had cancer.

Food remains a mystery to me.  I eat it, and then I may or may not throw it up.  It's a fairly acute phenomenon, and unpredictable, so also a little awkward.  I wear shoes on the scale at the doctor's office to minimize the appearance of weight loss.  Although I don't know how I'll be able to justify wearing clogs when it's 90+ degrees out. Even if they are the best shoes in the world for your feet and your back.

Finally, after all this, you may be wondering.  "So, how are you doing, personally?" or "So...wait, I'm not sure if I care beyond the information already provided.  I'm going to bed."  If the latter... Good night and good luck, folks.  The End.  If the former, despite the raving madness of my magical thinking, I think I'm doing and feeling great.  I have 3 final things to say.

First, I feel like I may have left people hanging by abandoning my blog.  I realize that people haven't forgotten that I had (have?) cancer and a stem cell transplant and that all kinds of misery and melodrama followed.  I guess I thought everyone would forget after a year or so, or would at least be so tired of hearing about it that they could barely open Facebook without cringing in apprehension that there would be an announcement of a blog post trumpeting, "Did I ever tell you guys how my second leukemia symptom was RECTAL INFLAMMATION?"  But I'm beginning to think maybe I'm not entirely accurate in my thinking about that.  I have noticed that in the past few months when I see people that I don't see often, they ask me how I am.  "Hey Jessie!  How are you doing?"  And I say, "Hey friend!  I'm fine.  How are you?"  And then there is this awkward pause.  And they smile at me and I know they are thinking, "No, I mean your recovery.  You know, the whole cancer thing.  How is that going?"  I am much less adept in speaking situations than writing ones, so even if I do try to explain in person how I'm doing to those that pry hard enough, I get the feeling I am leaving them unsatisfied if not completely bewildered.  Anyway, I apologize for that.

Secondly, and this follows the above realization, I began to put myself in the shoes of a blog-reader.  Which isn't too hard, because I read many blogs.  So it turns out they are my shoes already, which is pretty convenient.  Or wait, I am in their shoes.  Anyway, when I was first diagnosed, some of the most detailed and useful behind-the-scenes leukemia and transplant info I read was on other peoples' blogs.  But there was always a looming, horrible side to this sort of blog-following.  Many, even most of the blogs just ended nowhere in particular.  Others ended right before a big, dangerous procedure with no follow-up posts.  And a larger number than one would hope ended with a loving family member posting about the blogger's transfer to palliative care, and eventually, their obituary.  Regardless, there seemed to be few to no blogs that were more than a year or maybe a couple years long.  It was disheartening.  And scary.  I'm sure that with some of the blogs that just ended, nothing much was happening anymore so the blogger just stopped writing.  However, you know what a newly-diagnosed potential transplant recipient needs to see?  They need to see that that although they will go through months or years of treatment and transplant and recovery, that there is the possibility that there will come a time when nothing much is happening anymore.  Even if it's just for a little while.  Someone needs to stick around and tell people that something, anything, however small, is on the other side.  I have a couple of blogs that I follow written by women that have had transplants, made it a couple of years, relapsed, had another transplant, and are still having moments that make it worthwhile (amongst the admittedly crappy moments) 3 years later.  And still they blog, and they are awesome.  I want to be awesome like that, too!  Well, I'd like to be kind of awesome...maybe someone that checks in every couple of months.  Let's keep expectations low here, people.

The thirdly thing I would like to say is how much fantastic-ness there has been in my past couple of years on borrowed time.  So much of it has been due to being able to share in other peoples' lives, which I guess is what life is, for the most part.  Thank you for that, you know who you are.  And all the wonderful, turbulent times with my Luna... the still hysterically laughing after all these years with Brett... I could go on and on, but it seems I already have.  I really have been trying to touch base with my friends and loved ones individually in some shape or form, which is happening at an absolute glacial pace, but it is happening (and if you read that and now you're like, "What?!  I don't even remember what your voice sounds like." then I haven't gotten to you yet but I WILL).  And yet there has been a lot of crappiness, too.  For myself, and for other people I care about, and it's all very inexplicably unfair and then we know that fairness has nothing to do with it and so on and so forth.  But I am being honest when I say I'm in it for all of it.  The highest highs and lowest lows.  I'll take it all.  I believe I have said that before, but this time I am also compelled to quote the Yaqui brujo, Don Juan (according to Carlos Castaneda):

"For me there is only the traveling on paths that have heart, on any path that may have heart, and the only worthwhile challenge is to traverse its full length--and there I travel looking, looking breathlessly." 


I have certainly quoted him before.  I am also compelled to declare that quotes are entirely overused in non-fiction writing and correspondence these days.  I'm sure there is a quote about that somewhere.

And finally, I am not capable of the magnitude of magical thinking that is required to cover this blog.  Please knock some wood for me, after you read this?  Maybe twice, if you have time.

♥