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.

♥

FAQs

First, quick update.  We have long been home from Seattle, and concluded our trip with a boat trip to Bainbridge Island (um, I guess obviously it was a boat trip), a tour of the stem cell labs and facilities (so cool to see real scientists!  They have lab coats and Erlenmeyer flasks and everything!) and a meander down the Oregon coast coming home.

Everything at the Hutch ended up going pretty well.  Bone marrow biopsy was clean; my cells are 100% donor cells.  No uterine polyps or fibroids on the ultrasound.  No GVHD detected in skin punch or eyes.  Bone density good.   Everything going smoothly.  In fact...maybe too smoothly.  Time to change the meds!

I know I've been complaining about the bucket of pills I have had to take each day since day one.  But you haven't heard anything until you've heard me complain about tapering off them!  First, I had to drop my hormone replacements.  Days of manic mood swings ensued.  Second, I cut my cyclosporine dose in half.  Days of sporadic ear and facial rashes followed by sweet Benadryl nights ensued and continue to ensue.  But overall, I'm down to 3-4 pills 2x a day, not including vitamins (which are gummies nowadays because I am so childish that I just refuse to take any more pills).  I'll start a taper off prednisone in a couple of months, and the rest a couple of months after that if all goes well.  Counts continue to look pretty good, red blood cells coming back and kidneys doing a better job of doing what they are supposed to do.  I'm feeling a lot better, with a lot more energy.  I attribute that to actually having oxygen in my blood for once.  So that's nice.

Now, for the questions.  I didn't expect that answering them would require so much soul-baring, but I did promise to answer them all as honestly as I could, so here goes.  Please excuse rambling sentences and characteristic overuse of commas.

1) How has this experience changed your relationship with a greater power and your spirituality?
I wasn't particularly settled on the idea of a sentient greater power before this experience, and was still very much searching in the spirituality department.  When I got sick, I did try to think my way through it, over and over, to get something worked out before I died (sigh, always the procrastinator).  Needless to say, that all came to nothing.  Big relief I was given an extension on the living part.

The cool thing is, when I wasn't over-thinking the whole situation, I did come to experience a greater power, if "power" is the right word for it.  It surprisingly came through people, through all of you and more, people alive now and people long gone.  Even when I was completely alone in my hospital room.  It was like everyone was just...there, or here, or whatever.  It is strong and it is real and I can't say who or what orchestrates the whole thing; in fact, I can't say that I care in the end.  It's just wonderful to really know that it's there.

2) How do you look at society when you are going through this...crap?
I can't say I look at it differently; I'd been a little unimpressed before I got sick.  I certainly see more good in individuals then I previously believed was there, which only makes the collective crappiness a little more incomprehensible.  I'd still like to see certain things improve, considering the amount of effort I am putting in to stay here.  That, and I have brought a child into this mess and I believe she deserves a little bit better.

3) What are the things that make you feel good when you are feeling (A) sick (B) afraid (C) alone?
A.)  Medication.  I'd like to be able to say something like "breath work" or "meditation," but that simply is not the case for me.
B.)  Brett.  Also, see #7, below.
C.)  see #1.  I hardly ever feel alone anymore, whereas at one time, it was a state of being.  There was a long period of surreality where my entire world was split into me vs. everybody else.  It was like I was watching a TV show of other people walking around healthy, and I was completely detached from them.  I couldn't understand any of their concerns, emotions, or lives in general anymore.  I'm not quite sure when that faded away, probably when I began to own up to the fact that the cancer was part of me, but just part, and I am still a normal human being.  Or slightly abnormal.  But lovably so. 

4) If the ovaries are indeed firing, can you or would you consider getting pregnant again?
If they were, I theoretically could.  They don't totally seem to be at this point, is the final verdict.  But either way, no.  For one thing, it seems risky.  I'm not "cured" yet; they don't consider leukemia cured until one has been in remission for 5 years.  That just seems like a dodgy situation to bring a new kid into.  For another thing, I've been pumped full of toxins, medications and radiation.  Who knows what kind of offspring that might spawn?  And finally, I hadn't really wanted a kid #2.  I love Luna to a million pieces, and she is wonderfully challenging, and I'm good with that.  So, that ship has sailed.

5) How much physical pain have all of the different procedures caused you? 
Probably not as much as you'd think.  In general, the headaches are the worst pain of all.  As well as the severe nausea when I got my intrathecal injections.  Oh, and the rectal pain when I first got sick.  On a scale of 1-10, childbirth being a 10, those pains were 9's.  A lot of the smaller pains (bone aches, biopsies, needles, etc.) become so frequent, they are sort of just sensations any more.  Not really painful, per se.

6) How did you manage not to give into the pain and give up? 
The pain never caused me to consider giving up (geez, narcotics.  They may be all kinds of no good, but they are also small miracles), but the exhaustion sure did.  I sometimes just got so tired of it all, body and soul.  Not to say I was standing on any ledges or anything, but there were times that I thought, "I can't do another intrathecal injection.  I can't take any more pills.  I don't want to go back to the hospital.  I'm just going to not do anything anymore and ride this thing out into the sunset."  And then I went ahead and did all of those things anyway, because despite how often people kept saying, "things will get better," things actually did get better.  And eventually, life kept presenting me with more wonderfulness, despite everything.  And all the people I love kept showing up and refused to go away.  Thanks for that, by the way.  So for the moment, it seems worth sticking around for awhile if it can be arranged.

7) How did you manage your fear?
First, I would change the "did" in this sentence to "do."  I am still scared sometimes.  A lot of times, actually.  Second, I'm not sure I "manage" it, but here's what I do.  I just feel it, completely and fully.  It was difficult in the beginning, because I was stuck with this stupid idea that I had to be "strong" about the whole thing.  But eventually, with Brett's unyielding encouragement, I learned to just cry and wail and whine about what I was afraid of and eventually, surprisingly, it just kind of petered out after awhile.  I suppose I have to, in some way, accept my fears as part of me, but only just part.  Just like I have to accept my cancer, my tricksy blood cells, my exuberant new cells, and the physical rollercoaster of adjusting to them all.  I don't take enmity with any of it, I have to take it all in with an open heart, and then it doesn't own me.

8) What are you going to be for Halloween?
No one really asked me that, but I wish someone did because Halloween is my absolute favorite holiday!  So for your information, I am going to be a Black Widow spider.  For some reason, Brett takes offense.  Luna is going to be a witch.  I don't know what Brett is going to be yet.  Our house looks super scary.  It's going to be awesome!

Well, it's Benadryl o'clock for me and as everyone knows, one should never Benadryl and blog.  In fact, it is quite possible that this blog will go on hiatus for awhile.  Not necessarily because I'm all better and I lived happily ever.  It's just that life has been just too incredibly full lately.  Can you imagine anything better than that?!

Big giant love to all,
Jess

From the Trenches

A quick update from my latest Seattle adventure, lazily written as a bulleted list:

• First thing Monday, I got a blood draw and had an IV placed for sedation for my bone marrow biopsy.  Although the IV had to be painfully reset several times, I was fairly excited at the prospect of having IV sedation for my biopsy.
• Counts were good, especially WBC which were 5.1, and neutrophils which were 4500.  All red blood cell counts continue to go down, although creatinine was also down to 1.6.  
• My doctors are all delighted with my progress, or rather, lack of further degradation over the past year. They were so impressed with my strength and range of motion that they said I could cancel my physical therapy appointment.  As my nurse practitioner said to me, with a raised eyebrow, "I know you already know what to do."  I'm assuming that means that although I'm doing okay, once-a-week walks will not suffice.  There was some loose talk about tapering off my meds, which will be discussed further on Thursday.
• My doctors also marveled at my skin sensitivity and head problems.  Removing my Ommaya port in the future was mentioned as a possibility.  Nothing can really be done about my skin in the meanwhile.
• My dentist told me she would allow me one cleaning this year.  I have to be careful though, because I can get pneumonia from it.  I can get pneumonia from pretty much anything, apparently.
• Had to open my big mouth and blab that I had never had IV sedation for a biopsy, so I was told I wouldn't have it this time then, either.  Just oral sedation.  IV is painfully taken out.
• Had a cafe tuna sandwich which is pretty much all I ate for the 3 months post-transplant last year.  I have been looking forward to one for 9 months...no other tuna sandwich is quite the same.
• Went for bone marrow biopsy, and had only oral and local sedation.  Biopsy unpleasant as always.  They also decided to take a skin punch out of my forearm to check for GVHD, a procedure which is exactly as gross as it sounds, and thus added to my growing collection of scars. 
• Later that day, I became reacquainted with my tuna sandwich from earlier, probably courtesy of the fentanyl.  I spent the rest of the day in bed with a bowl at my side.
• The following day, I had an eye exam that was largely uneventful.  No GVHD in the eyes.
• Today, I had a bone density scan, a chest x-ray, gynecologist appointment, and nutritionist consult.  There are no real results from these yet, except (sadly for you) the gynecologist.  Apparently, either I have a fibroid or polyp or something, or my ovaries somehow picked themselves up by their bootstraps and started working again.  I now have to have an ultrasound and stop my hormone replacement therapy to find out for sure.
• We took a free ride up the Space Needle and the day was clear and beautiful, but cold as ever.  
• We are enjoying 5-star accommodations at the Hunter-Cobb household during our stay.  I highly recommend them should you ever find yourself in Seattle.

I'll hopefully find out the rest of my results tomorrow.  I will also be getting my kid vaccines tomorrow.  Six of them I believe.  Seems that that could lead to all sorts of nastiness, but let's remain optimistic for Pete's sake.   That's all the energy I have for tonight. More later...

Love, Jessie

P.S.  3 question have been submitted so far.  Remember, I'll answer anything, no matter how inappropriate it may seem!

Happy Birthday to me

One year ago, a few hours before my stem cell transplant, I felt like this.
Yesterday, when Brett asked me how it felt to be a day away from Day +365, the best I could come up with was, "It doesn't feel like anything."  Which, admittedly, isn't very enlightening or inspiring; in fact, it is a little disappointing.  How typical of me.

I tried to give it some thought today, when I wasn't busy doing other things to try to distract myself from having to give it some thought.  And I came up with two things.  The first thing is, I don't really measure my progress like that.  I'm certainly not nay-saying milestones.  I like a good milestone as much as the next guy.  But my milestones are more about everything except the transplant.  For example, I've seen loved ones get married.  I've seen my daughter learn to tell stories, draw, write, and argue with me WITHOUT END like she's Clarence Darrow or something.  I may actually finish reading the Song of Ice and Fire series.  I saw friends' babies born.  I've made new friends.  Even things like, "Wow, I thought I'd already laughed as hard as I could laugh," or "Ok, this was definitely the worst I've ever felt in my life" are points in time that are significant to me.  I swear, I come to a new milestone almost every day.  So I guess each new day is a milestone; and that's no different from today.

Now, if I had overslept or something a year ago and somehow missed my transplant, I realize none of these milestones would have happened.  This brings me to the second thing: gratitude to my donors.  Some amazing mothers in hospitals both here and halfway across the world agreed to donate their child's umbilical cord to a public cord bank.  They could have banked them for themselves, or said, "That's weird.  No way." but they didn't.  And they won't ever really know that they gave someone at least a whole year of a ridiculous amount of milestones.  I hope somehow, in some way, I'll be able to pass along a tiny portion of their generosity.  This gratitude extends to all of you that joined the donor registry with yourself or your babies' cords.  I hope you realize what and incredible, stupendous act of generosity that is.  It is! 

Oh, and what is a birthday party without games?!  I been wanting to do this for awhile, and today feels like the right day to do it.  This game is called, "Everything You Wanted to Know About Having Cancer*" (*but were afraid to ask).  For the next week or so, I'll be in Seattle for my 1-year follow-up appointments.  During that time, you can ask me absolutely anything about leukemia, transplant, this blog, etc.  And I will answer all questions in a post after I get home from Seattle.  And I mean anything!  Like, "What's your favorite narcotic?"  "Did you write a will?"  "What does it feel like to get chemotherapy and/or lose all your hair?"  "Do you think your boundless positivity and consistently upbeat attitude has helped you?"  I promise I will answer as truthfully as I can.  You can email me questions (jessiequinn at gmail dot com).  Or, you can ask in the comments section.  I can't think of a way for you to remain anonymous to me (if you can, great), but I won't publicize who asked what question.  Nor will I hold it against you or think you're strange for asking.  So this game requires audience participation, people!!  If no one asks anything, I'll be forced to blog about the same old "my blood counts are up/down/the same" "I think I'm relapsing/oh wait, I'm not" "I have another rash" for the foreseeable future.   So make with the questions.  It will be fun...ish.

Expect updates while I'm in Seattle, but also be prepared not to actually see any.  I really will try, though.  I'm going to go ahead and put it out there:  I'm as nervous as a cat in a room full of rocking chairs, but I'm looking forward to it at the same time.  Onward and upward, as they say.  But mostly onward, in this particular case.

Love and love and love and sincerest thanks to everyone who has been with me through this.  You have really literally been with me.  I can feel it every single time I have to summon up my determination to get through each obstacle and make my way to the other side of every fearful moment.  I appreciate it with all my heart.                                  

Back-of-the-napkin amateur medical detectivery- Part II

FAQs:
1.  Is detectivery even a word?
answer:  Yes.  It is the act of being detectiverous.

My investigative approach this time involved the novel methodology of "asking my doctor, who is trained in such things, what she thinks."  While my WBC continue to wildly see-saw all over the place (last week, 5.1; this week, 3.2), my red blood counts continue to go down slightly.  I posed this scholarly question to my doctor last week, "What's the deal with my red blood cells?"  She told me that the kidneys produce a hormone that stimulates the production of red blood cells.  Since my kidney function has been declining over time due to cyclosporine toxicity and my apparent inability to drink enough water (3.5L/day not being "enough"), my RBC production has gone down (as well as hemoglobin production).

Well.  I took this information and summarily cast it aside.

So this week, when RBC counts still sucked, I freaked out in the customary manner.  A little Googling lead me to some sort of kidney website which again detailed the relationship between anemia and kidney function.  Due to production of a hormone called EPO on behalf of the kidneys. 
Oh.  Right.

So it seems that my doctor, the so-called "Head of the UCDMC Bone Marrow Transplant Program," might just know what she is talking about...that is, IF! her information checks out with my Excel spreadsheet when I graph RBC v. creatinine levels and determine that there is indeed an inverse relationship (creatinine levels increase as kidney function decreases, I can't remember if I have mentioned that).  Until then, the saga continues.  Well, for me, anyway.  Everyone else seems pretty ready to put the whole thing to bed.  But I leave you with this:  I am now scheduled for a urinanalysis and ultrasound to check out whatever needs to be checked out about the kidneys.  So the case is not exactly closed because there could still be some other nefarious thing!!  Even if my "doctor" says these measures are "routine."  Hmph.

Meanwhile, most other things are going well here.  Hope they are where you are too!

Back-of-the-napkin amateur medical detectivery

First of all, a disclaimer.  I am not a doctor.  At least, not the kind that actually helps people.  So all of the following is probably wrong, but it is enormously satisfying to me and it's my blog. 

I figured if I didn't update now, I probably wouldn't update until October or something, so here goes.  I had my blood draw this morning.  My white blood cell count went up to 3.3...still low but fairly normal (although below my own average) for me.  Neutrophils almost doubled since my last blood draw and are well within the ordinary person's normal range.  Hell, I may have more neutrophils than you at the moment.  Platelets are low-ish, but normal for me (although, again, below my average).  The mystery that remains is this:  how on earth I spent 3 days frolicking around at 8500-9000 ft with a hematocrit of 28%.  Low normal for a healthy person is 34%; below 27% and I get a transfusion.  So that is still oscillating downward, along with all my red blood counts (hemoglobin and red blood count as well).  I guess stunning scenery can counteract the effects of anemia.

I took a minute to contemplate all my data in my handy dandy spreadsheet and graphs and a couple of things stood out.  First, my white blood cells regularly peaked at the beginning of each month since January (to between 5 and 8), then declined throughout the month to around 3.  I'm guessing this may be due to the intrathecal chemo I received at the end of each month, followed by a short course of steroids, which inflates blood counts (releases your blood cells out of the marrow into the blood stream).  This cycle stopped in March, when I stopped the chemo.  I had another WBC peak in mid-May, when I got sick with a cold.  I could assume that at this point, WBCs were flooding out of the marrow to do their thing with the virus.  Go team!  Counts then went back to the low 3s.  They started to decline again when- you guessed it (or perhaps didn't guess it at all)- I started to taper prednisone, my other steroid dose.  How about that?  Neutrophils follow the same pattern.

The second thing I noticed was that all my blood counts crashed and my kidney number got awful soon after I got pneumovirus.  I guess that sometimes happens with viruses, which I realize is the opposite of what I said earlier.  But that's the beauty of the human body!  Its data can fit any explanation you want it to.  Especially when you have a rigorous sample size of 1.  I currently have no hypothesis for the RBC issue but I intend to look into it.

Anyway, that's that.  See you hopefully a few times in September- that's when I have my one-year follow-up in Seattle.  Let's not talk about that just yet.

Crap, is it August already??

Well, guess I missed July!  Oops.  All kinds of stuff happened.  Too bad you don't get to hear about most of it.  I will tell you this:  I got pneumovirus.  It went away.

Anyway, we just got home from a lovely camping trip at the edge of the Mokulumne Wilderness.  It was Luna's first, and thus a first for all of us as a family.  There were amazing wildflowers, ginormous trees, new birds, bats, and lots of hiking.  It was a fantastic, if slightly mosquito-y good time.  Luna was completely beside herself.  Every time we turned around, she was scaling granite boulder piles, or climbing on fallen trees, or was in the middle of a meadow picking flowers, or was climbing up a hill off-trail.  This shows that a.) she was clearly born to be outdoors, and b.) we should probably be more attentive as parents, so we are not always pulling our daughter off the top of boulders, out of trees, etc. 

Apparently, there is a way to get a fatigue-plagued, low blood-count-having, drug-addled, kind-of-complainy transplant patient to physically push herself a lot further than she has in a long time.  I guess all I needed was an interpretive sign cheerfully posted at a trailhead in camp.  The sign provided information on a couple of suggested hikes, the easiest being described as a moderate, 1.5 mile hike through cool pine forest and across a meadow of wildflowers, ending at a high alpine lake.  The other suggested hike was one I had hiked before while backpacking (in, obviously, healthier times).  I  remembered it as steep, exposed, and long; and naturally chose the first hike. Brett, Luna, Topo and I set off triumphantly.

Now, once you have me on a trail, you really just have to rely on my stubbornness from a former life to keep me going.  Even if the trail is longer than the cheerful sign had indicated (how is that even possible?!  The Forest Service could have figured the mileage on their personal iPhones, for Pete's sake).  Even if it is steeper than previously supposed.  And more exposed.  And climbing up to over 9000 ft in elevation.  Keep in mind, I haven't even walked more than a couple of miles at sea level on flat ground in at least a year.  And here I am on this mountain, saying, "Let's just go a little further until we can see where the trail goes."  "Let's just go to that ridge and see if we can see the lake."  "We've come so far already.  Let's just keep going until we get there."  By the time we finished that 5 mile hike, I must have been completely out of my mind.  Because Luna was falling asleep, I suggested another hike to keep her awake.  So we hiked up another trail looking for an old mine, and when we didn't find it, I suggested, "Let's just go a little further and see what the trail looks like."  "Maybe it's off the trail, and we should just climb up this rock face here and see what's on the other side."  "Well, it's not here; let's climb up and peek over that ridge."  Brett was kind enough not to point out that I had no business doing any of this.  And guess how I felt afterward.

GREAT!  I mean, so I went to bed at about 7:30.  So I am sunburned (I took every precaution, except, you know, "staying out of the sun").  So my legs are a little shaky.  I feel like if we could have just stayed up there for say, a month, I could have kept going and going until I became practically my old self...or rather, another new version of my current self.  Jessie 2.0.  One with fewer bugs and less likely to crash.

But allow me to temper all this good news with my characteristic worrying.  Right now, I'm starting to worry about my blood draw tomorrow.  In July, the month that Blog forgot, my kidney function was getting progressively crappier.  Then, at a couple of blood draws, all my numbers shot south (and I know that this was a dramatic drop because I recently put all my blood count numbers into an Excel spreadsheet and graphed them!  There, I said it!  I also added trendlines and R-squared values!  Laugh all you like!  I already know I'm a nerd!).  This was concerning to all, but my doctor was pretty sure it had to do with medications.  So she cut all my dosages for several days to see if my numbers recovered.  And they did, a little.  Also, I wound up with a rash covering almost my whole face and scalp that I was pretty sure would never go away...until it did about 2 days later.  I am still pulling large patches of dead skin out of my hair periodically (yeah, guess I really do need need those stupid pills after all). 

Since the meds seemed to be the culprit, my dosages were re-upped and at the next blood draw, my blood counts maintained the same level, except my white blood cells and neutrophils.  They dropped again (you may remember my neutrophils from past blogs about me worrying).  With low neutrophils, I'm even more susceptible to infections than I normally am (normal being "pretty susceptible").   So I have another blood draw tomorrow, a week earlier than I'm usually scheduled.  My doctor is calling Seattle about the whole thing.  My worries include the following: that my neutrophils will be so low that I'll be instructed to be super-extra careful again like the post-transplant days, and that something more nefarious than medications is messing with blood counts (something that begins with an "L" and really, really sucks).

To play the bright side for a moment, I'm glad we took this camping trip before my doctor could tell me not to for whatever reason.  Turns out, it is pretty hard to worry about anything when looking at an alpine lake just as blue as anything you've ever seen, surrounded by snow-covered peaks and the sweetest-smelling pines while sitting with your super-awesome husband, super-cute kid and trusty dog.  So that was good.

Well, all this writing is getting my mind cranking up about tomorrow again, and frankly, I'm not ready to think about it yet.  So I am abruptly ending this post here.  I hope everyone is really enjoying the summer, wherever you are!

Apparently, this is now a monthly blog

I know, that is total weak sauce.  But I only go to the doctor once a month now, and I have yet to convince myself that the minutia of my daily activities not related to my transplant journey are of interest to anyone.  And how much of my inane musing "On..." can one take?  It's like people who write memoirs when they're 20.  Only David Eggers can get away with that crap.

Oh, here's something funny that happened.  Brett had CVS on speaker phone while calling in a prescription for me.  When the pharmacist picked up the line, Luna pushed in front of us and yelled into the phone, "CAN YOU GET MY MOMMY SOME MEDICINE?"  Part of me wishes we hadn't said anything after that, just to see what the pharmacist said.  

Here's something else cool:  I just heard a barn owl fly by.

So anyway, since we've last blog-spoke, I have had 2 colds courtesy of my adorable little viral petri dish, Luna.  In the case of cold symptoms, I am to go to the clinic and get blood tests, have someone listen to my lungs, have a nasal swab (where they basically stick a q-tip up your nasal cavity to, oh, about where it meets your BRAIN and collect a snot sample), and have a chest x-ray to check for pneumonia.  The first time turned up rhinovirus (the common cold), and I was able to fight it off after about a little more than a week with no fever or complications.  This time they say my lung is a little wheezy, and that I really should be examining my sputum when I cough.  Rather than deal with yet another bodily fluid today, I think I am going to wait for the results of my tests, which haven't come back yet.  I don't have a fever and don't feel consistently bad...although I'm also not sure that I haven't trained myself to get used to feeling bad, which one could mistake for feeling better.  Anyway, I guess time will tell.  So I have a couple of days to convince myself that I don't have a non-treatable fungal pneumonia, but that I'm just at the "lingering cough" stage of a normal cold.  This should be fun. 

The cold-or-whatever-it-is development precluded a planned camping trip this past weekend, which deserves a resounding "boo."  But we did get to go see Music in the Park at Curtis Park, and I also got to go see the season 4 premier of True Blood at my fellow True Blood-addict Susan's house.  There were lots of other addicts there too that have been meeting for awhile. It's like an opium den over there. I'm glad I can now be a part of it.

In prednisone news, I have recently tapered down from 35 mg every other day to 20 mg every other day.  I'll be at this dose for a couple months.  I have already gone through the withdrawal phase I went through last time, so I don't need to bore you with tales of my mood swings and fatigue and inexplicable guilt that I'm letting everyone down when I'm feeling bad.  But surely now I will get a little more of my chin back?

I've read quite a few books and have been generally productive with my days lately so I believe I've earned the right to watch a few episodes of Pawn Stars tonight on Netflix.  So I'm signing off here.  I'll update after my next appointment, hoping counts will be decent and pneumonia fears assuaged.  But if not, I suppose we'll just deal with that too. 

Hope everyone had a great solstice and is enjoying the summatime.

sending love, gratitude, peace, and all that yummy stuff,
jess

On Navel Gazing

This post is actually not solely on navel gazing, but I have always wanted to title a piece, "On (subject)."  It sounds so scholarly, philosophical and important.  Meriting being called "a piece," in fact, rather than "a blog."  Anyway, moving on...

I haven't really blogged as I've spent the past little while being fairly tired of myself.  I mean, it's just all me, all day, every day.  It starts with a morning meditation, which should eventually bring me closer to experiencing my real divine self (which I'm hoping is a little less boring than my earthly, ego-driven self), although currently I am still working through the superficial mind-based me to get there.  Yawn.   After breakfast, a bunch of pill-math: "Okay, if I take these first they'll make me less nauseous, and if I drink this much water I'll be able to take 4 at once, and today is not a prednisone day but I do have to change my hormone patch but not this morning like on Tuesdays but in the evening, and I have to remember to call in a refill of whatever today and to pick it up before Sunday..."  The day continues with me checking the UV index to see how worried I should be about the sun today and which sunscreen I should wear and which hat and if I'll be on the sunny side of the car if I'm driving to the pharmacy in the morning vs. the evening; briefly punctuated by periods of examining every square inch of my skin for new freckles that may or may not have changed or new rashes that may or may not be from the sun (did I put sunscreen there yesterday?  was I even in the sun or did I even go outside?  what is this red dot?  i mean seriously WHAT IS THIS RED DOT?!).  There is usually a period of getting tired or not getting tired and questioning it either way, as well as planning a couple of activities with Luna, a couple of house projects, and making some headway on work (the consulting kind) the intensity and length of all of which combined must be JUST SO or I will burn out before Brett gets home, or even worse, burn myself out for the following day.   Eventually I take my evening pills and go to bed hoping I ate recently enough that they won't make me vomit and wondering if I drank enough water during the day that I won't wake up with a headache (or according to my doctor, kidney failure for Pete's sake).  I tell you, the level of self-examination is excruciating.  Meanwhile, I don't get very much of anything besides self-maintenance accomplished, it seems, and Brett picks up all that slack.  Saying I'm grateful for him is a bit of an understatement; I am with the exact person I need in my life.  Anyway, on navel-gazing: I needed a break.  But I'm better now.

Blood counts and etc.: still mostly stable as far as I know.  Bi-weekly appointments are now monthly because let's face it, even my doctor is bored by me.  I still vomit occasionally.  I'm still collecting data on this, but I suspect that it is avocado-induced.  Unfortunate, but what are you going to do.  Still have episodes of fatigue, as well as episodes of just fine, thank you.  I've gone to a few parties even, including a weekend in San Francisco and had a great time.  We've taken Luna birding again at the Cosumnes River, which she hadn't stopped talking about since I took her last time.  By the way, she's almost 3!!  We also went to pick strawberries on a farm with my parents and have slowly been putting the house (which, by the way, we are in love with) together.  It's such a great house, interesting and lots of character.  It makes the fact that it is high-maintenance almost enjoyable.  We continue to receive gifts and help and love from so many people...you know who you are!  You have definitely kept us afloat in more ways than you know.

Casa de Quinn/Williams

The small one looks over her domain

Anyway, everything is as I always say it is, up and down.  Does it sound like I'm complaining?  Well, I'm actually not.  I am really, really happy most of the time.  And I mean really happy.  Except for the times I'm not.  In which case, I may complain.  I've grown tired of saying, "...but I can't complain.  At least I'm alive."  BS.  I can so.  Everyone that complains is at least alive, whether you've been uncomfortably close to dying or not.  So being annoyed at my fat face and unruly hair and bucketful of daily pills and patient-induced neuroses is about as normal as I can get.  I know it's a luxury to be able to complain about small things, and I do appreciate the magnitude of that.  Not to be confused with a lack of gratitude.

It occurs to me that I rarely post pictures of myself, for obvious reasons, so here are a couple demonstrating my progression since not a lot of people have seen me in awhile.

I looked like a cancer patient a few months away from chemo.  I was.

 

Rosy cheeks, full face, lots of lustrous hair... the illusion of health was all side-effects of medications.

And then I suddenly looked like a 14-year-old boy.

SO...I'm keeping on trucking.  I have come a long way, and probably still have a long way to go (I'm not really sure since I don't know where that is).  Hoping everyone is enjoying their spring, or whatever the heck this is, has read the latest Sookie Stackhouse book, and has wonderful plans for the summer (or whatever the heck season is coming next).

Love^2,
jq

It's been awhile, eh?

I've been slacking on the blog again.  Noted.  List of pathetic excuses follows:

First of all, I needed some emotional recovery time from the CNS incident.  Second, we closed on the new house a day or two later and realized we had a lot of things to do in a very awkward amount of time, and nothing seemed to be happening when we just sat around and mused about it.  Thirdly, medically-speaking, I don't think a whole lot was really happening the past while.  My counts have been generally stable, I had another IVIG infusion, my creatinine levels keep trending high which means I'm supposed to drink even MORE water (ugh, I'm already at 3 L / day and am up half the night peeing 3 L of water accordingly), and that's about all I can think of.  The sun and warm weather has improved my mood and motivation greatly; however, I can't actually be in the sun because it triggers my cGVHD and little surprise rashes pop up here and there after exposure.  They go away on their own, but they are unsightly.  And you can imagine the absolute burden of having something unsightly saving your life.  Sheesh!  Sometimes I should just not talk.

Now, we are on our first tentative long-ish vacation in the past year and a half (which may not seem like a long time between vacations, but if you know our traveling proclivities prior to my dx, it IS).  We just don't get out of Sac much anymore.  Well, besides Seattle.  And a weekend trip to Carson City and Tahoe.  How about let's just get on with it.  We are wrapping up a week long trip in Santa Barbara and San Diego and I am so sorry, LA, we just couldn't fit you in this time.  Not only do I fear Brett literally exploding into a million bits of rage on the 405, my medical/energetic leash is a little shorter than I had daydreamed about, so we have had to limit our activities substantially...

For example, I did not expect to spend the first night of my vacation puking in a garbage can in a hotel room in Santa Barbara.  There may be those of you thinking, "Yeah Jessie!  Rock on!"  But it pains me greatly to say it was not like that.  At all. It was about 7 in the evening, the sun wasn't even down, and it came out of nowhere as usual.  In fact, the first honking event was in my good friends' (and hopefully still good friends, Yaskos!) bathroom, post-dinner party.  The vomiting continued into a Ziploc bag during the car ride home and ended with me with my head in a trash can alone in our hotel room; the box of kleenex for wiping my nose and mouth having fallen into said defiled trash can, and Brett down at the beach filming our child falling quite traumatically into the surf.  It was a low moment.

Needless to say, at least we all slept well that night.

But by incorporating daily naps, ample shade, and ready-at-hand anti-nausea medication into our travel plans, things have been going a lot smoother.  Luna is having a blast as there seems to be a toddler jamboree, beach, and/or Easter-egg hunt at every stop; Brett and I are having a blast spending time with so many of our friends and family (and mostly not puking in their houses); Topo is back to running amok with his friend Carly; and the overall change of scenery and break from house projects is doing us all well.  I still feel like there are more people I wanted to see, and with the people I did see, none of the visits seem long enough, and there are not enough senses to take in enough of the beautiful days that we had...and people, do you realize how much f-ing life there is to be lived in every dang moment?  It's ridiculous.  By the way, Luna revisited the ocean and frolicked about with no problem, even falling down and bouncing back up.  Whew.  Anyway, I'm sure the rest of vacay will be more ups and downs and if I haven't learned this by now I deserve to be smacked in the head by a sock full of quarters by the next person I meet (the point here being I'VE LEARNED IT.  Don't get all excited).

There have been some decidedly darker days in the past few weeks since I've written.  Mandi Schwartz, who I've written about before, died of leukemia a couple of weeks ago.  She was 23.  She survived a long time without treatment for AML, no small feat.  I still have our shared journey so vividly in my head.  Another woman I had been communicating with online through the Leukemia and Lymphoma Society lost her husband to ALL; he was my age.  They have a small son Luna's age.  And most recently, 3 young people in my hometown have died unexpectedly, in diving and car accidents (including the son of a dear family friend).  There doesn't seem to be anything to say that is adequate.  I just want to be able to send their families and friends love and eventually peace.  It makes my heart hurt.

So anyway, that's it from my end.  I will try not to be so derelict in my blogging responsibilities again.  Having said that, I also guarantee you that I most certainly will be, especially since we'll be moving next week.  And so it goes.

I hope everyone is enjoying the tentative onset of spring.
Love x1000,
~j

The girl who cried "wolf"

My CSF showed no abnormal cells in cytology. I am no longer seeing the spot, either (just the normal spots). They gave me lots of benadryl for my IVIG infusion today, so I'd better go before I write domething wacked-out and embarrassing. Good night.

In it

On Wednesday, I almost dragged you all into the anxiety that is my day to day existence.  Just to heighten the drama, and show you what it's like, rather than do what I usually do:  wait until it's all resolved and then describe it to you with a hilarious punchline.  But in the end, I didn't want to fully drag you in.  I will, however, drag you in partially. 

Wednesday, I started seeing the spot in my right eye that I began seeing right before my diagnosis a year ago.  I'm pretty positive it is the same retinal condition (retinopathy) that was triggered by leukemia when it infiltrated my cerebral spinal fluid the first time around.  I don't know how long it's been there.  This time, the spot isn't in the center of my vision, so I possibly didn't pick up on it right away.  At the moment, it's not even affecting my vision (although they usually get bigger so we'll see what happens), but I do see a flash of it every time I blink.  I suspected--no--I was positive, I was having a central nervous system (CNS) relapse.  Which would also explain the consistent headaches I've had for the past, oh, I don't know.  3 months?  Maybe it would explain the afternoon of vomiting on my cancerversary?  Part of my high-risk diagnosis has always been my CNS involvement.  It can be difficult to eradicate Leukemic cells from the CSF (cerebral spinal fluid, you may or may not recall) because they can "hide out" amongst the tissues.  Moreover, you can be wrong in thinking they're gone, because they are not necessarily evenly distributed throughout the fluid, so one can draw a sample that just happens to miss the leukemia cells.  If you relapse in the CNS, it usually eventually happens in the marrow too.  And that means starting everything all over again, with probably a lot worse results.

So when I saw the spot, I tried to remain as calm as possible.  Which ended up having to be an Ativan-assisted calm, but it was the best I could do.  I told Brett, and I swear his impenetrable demeanor cracked for just a second.  But he quickly resumed his do-something role.  We calmly emailed Dr. R. and suggested I might come in for a test of my CSF as soon as possible.  She set me up for an appointment for 3:00 on Thursday.  In the meanwhile, I researched everything I could about relapse after transplant, 2nd transplants, cranial radiation, etc.  For the record, everything is possible, with a low probability of long-term success.  I read about clinical trials for target-specific treatments in case transplant wasn't possible.  I wondered if I even was willing to go through treatment again; calmly considered the possibility of things not working out for me, wished I had more plans made or at least written down somewhere for that eventuality.  And if I declined more treatment, how much time would I have and what would I do with it?  What would I be able to do?  Yes, it was grisly.  Yes, I almost blogged.  Yes, it would have depressed you.

At the appointment on Thursday, my Dr. assured me that a CNS relapse is rare as she casually drew fluid out of my brain.  She said she could give me preliminary results the following day (today), and final results Monday or Tuesday.  Although I couldn't eat, and couldn't sleep, I managed to remain calm the rest of the evening.  Consciously enjoyed my time with my family.  Then distracted myself from planning for my demise by watching Ghosthunters and a movie.  I somehow slept.

My anxiety built all day today while I waited for the call.  Brett had a dr. appointment, and Luna and I went along to keep my mind a little bit occupied, but I checked my phone and email about every 5 minutes.  I called the Cancer Center and left messages.  I emailed my nurse and both of my doctors.  Finally, I received word.  They didn't see anything abnormal in the CSF sample, nothing like when I was first diagnosed.  It seemed like it might test negative after all, so far things are "looking pretty good."  Normal counts and everything.  But they won't know for absolute sure until a more fine-scale examination of cytology Monday or Tuesday.  That's enough to get me through the weekend, I suppose.  There is definitely an element of relief, but I'm not going to get crazy with it until I hear what the cytology says.

So I guess I have possibly dragged you in partially as I wait through the weekend for the final results.  I kind of apologize for that, because part of me doesn't want anyone to know what this feels like.  Or to even try to imagine it.  I just can't wish that on anybody.  But I also have this insatiable need to show you how quickly the trajectory of your mind, and life, can change in a very small moment. 

I'm not exactly out of the woods yet, but I plan to enjoy the weekend, and will update as soon as I have more info.  And anyway, if I'm not relapsing, wtf is going on with my eye this time?!  So there's that.  I still have remained--for the most part-- eerily calm, despite a few tears here and there.  I can be here and enjoy this moment while knowing that tomorrow may be the worst day of my life.  I've had plenty of practice with that.  I know that everything is transient.  The universe keeps reminding me.  Over and over.  I GET it.  The universe is a nag sometimes.

More next week!  love, j

Oh my!...uh...

So as I mentioned on Facebook, my doctor here at UCDMC talked with my doctors in Seattle and they came to the decision that I came to months and months ago...I've had quite. enough. interthecal. chemotherapy. 
Reasons why:
-the 3 weeks of side-effects following each injection about which I have whined in previous posts
-the 3 weeks of a 2nd steroid on top of my prednisone required to alleviate said side-effects
-my cerebral spinal fluid (CSF) was cleared of leukemia cells with first treatment, and has been clear ever since.  The original blast %age was only 8%, I believe.
-there is no empirical evidence that 6 post-transplant treatments are better than 4.

So unless I relapse, I'm done.  DONE.  D to the O-N-E.  Yeah, I said it.

And what, you may ask, is to become of this accoutrement (besides providing you with fodder for your nightmares henceforth)?

The line leading down from the reservoir is a tube that allows the CSF to fill the reservoir.  My Ommaya reservoir is actually towards the front of my head, just above my hairline, and the tube runs down at an angle.  I often referred to the whole apparatus affectionately as my "head port."

Well, Seattle says their standard practice is to just leave it in forever as it probably won't do any harm.  UCDMC says their protocol is to remove it eventually, as the remaining hole in your head will heal and probably won't do any harm.  Either way, it will stay in for some time so my CSF can still be tested periodically without the need for a lumbar puncture (and I'll let you decide how you feel about any procedure containing the word "puncture").  Remember, I actually have 2 holes in my brain, the one filled by my Ommaya reservoir tube, and the "wrong turn" that was apparently taken by the surgeons on their first try (but just one hole in my skull, so I'm...uh...lucky?).  I don't know what effect their handiwork will have on my brain, with the port removed or not.  My doctors wave it off in a "Oh, that ol' part of the brain?  That's not for anything significant anyway" type of way.  And given the neurologic effects of all the IV chemo, radiation, IT chemo, and meds I've had over the past year, who would even notice if these tunnels in my head severed anything important?  Brett suggested I may lose the ability to recognize the number 3 or something (wait, what number?).  What I do know is this: 1.) the port doesn't mess up my hair too much, so I don't have any beef with it at the moment, and 2.) I intend to blame my every moment of idiocy in the future on it.

So this seems to be a good way to go into my one-year cancerversary.  I know the next damn thing will come along--it always does--but for now I'll be just...happy.  Really happy.

love to all,
jq

It's finally March! You know what they say, "In like a..." oh, forget it.

I have good-ish news.  My Ommaya injection that was scheduled for today was delayed until next week, which means I can hopefully make it through a trip to Tahoe for a wedding this weekend without being on massive amounts of steroids and painkillers.  On the other hand, maybe it wouldn't be all that different from when I used to drink at weddings (Janet, I am so sorry for that speech on your wedding video).  But I qualify "good" with "ish" because the reason my injection was delayed was that I have been so sickly lately (that, and now I have an Ommaya injection next week).  In fact, I had a random vomit session last night.  Today I felt pretty good, though.  And my counts were inexplicably stellar today.  My worrisome platelets jumped from 89 last week to 155 this week.  If they're going behave like that, I'm going to ignore them a little more.  Clearly they are just desperate for attention.  So I'll concentrate on the more reliable blood cells.  WBCs and neutrophils are also up (4.7 and 3900, respectively) so I also have a little immunity.  Well, as much immunity as a transplant patient can have at this point.  Which is...not much.  But still.  Hematocrit is 36% and hemoglobin 13 which means I won't pass out at some key part of the weekend from anemia.  That's a good thing (on the other hand, maybe in wouldn't be all that different from when I used to drink at weddings. :) ).

We also got the house we were considering.  So we'll be moving by the end of the month!  I'm pretty excited...well, of course there is the whole "moving" part.  In fact, if I talk about that right now, I'm going to need to go get an Ativan.  Moving on...

I have an actual haircut scheduled for this week.  If that's not moving forward, I don't know what is.  

I really don't have a heck of a lot of a else to blog about.  The thing is, March 14th will be the one-year anniversary of my cancer diagnosis, and I'm getting all retrospective-y again.  Next scheduled reflections, should we all still be together on this blog, will be Luna's 3rd birthday (June 7) and my transplant "birthday" (September 22nd).  So you've been warned.  Recently, I read this blog from a woman my age who has undergone 2 transplants and a lot of treatment for GVHD.  I relate so much to what she feels (although I don't feel as though I've lost any friends because of this.  And if I did, I would deserve it because I never call anyone or answer my phone or respond to emails [I'm a decent texter though].  I also over-use parentheses and commas, which must be fairly annoying.  I still  haven't had anyone say anything really clueless or offensive to me, at least not that is memorable.  And I wish somebody would so I would have a story for my blog).  Do I feel like I've received a gift from this ordeal?  No, not really.  Is the sky bluer, my time more precious, my compassion for others that suffer deeper, my view of life more vivid?  Sometimes.  At other times, everything is slightly dulled and otherworldly.  Would I trade a more fully realized life for having never gone through this crap?  Maybe it's too early to call that one.

I just sometimes wish I had something profound to say.  Now I've just sat here for 45 minutes thinking about it, but I have nothing to write.  I'll guess I'll do it when I'm more organized.  Maybe that will be on March 15th.  Or maybe I won't even blog that day.  But let me just say I'm not sure I have an organized coping mechanism or philosophy about this thing.  It's f-ing confusing.  At times I feel enough positivity to buy a house and imagine living there for the next xx years.  At other times, I am convinced I won't even make it to the next scheduled retrospectives.  Next minute, I just wallow in anger and sadness at the unfairness of it all.  I have the whole "one day at a time" thing going on, but that's about it.  Or maybe that is the coping mechanism.  Either way, I fall off that wagon frequently.

Now I've wasted two paragraphs of your time saying nothing at all.  Brett is yelling at me to go to bed.  He would be extra annoyed with me if knew I hadn't even taken my pills yet.  Goodnight!

Still feeling joy, celebration and life and all that, but...

Hope everybody is enjoying their February!  Depending on where you are, it seems they are saying it has been unseasonably warm or unseasonably cold.  So if February doesn't typically appeal to you seasonably-wise, I guess you're in luck, or incredibly annoyed, or something.  I can't wait to hear all the allusion and wordplay on "in like a lion, out like a lamb" in the news next month.  Anyway.

So my ER recovery never really manifested itself in totality; I've been weak, tired, somewhat nauseous, and generally kind of crappy-feeling ever since.  It's been making me think that other things are at play rather than cyclosporine dosage and painting a freaking miniature table set, so I recently looked into it. Well, I think it comes down to the following:  I forgot to mention in my last post how I am seriously tapering my prednisone dosage.  In the month of February, I have gone from 35 mg/day to 35 every other day, so it has essentially been cut in half (incrementally).  Lately, I realize I'm feeling more like I was feeling...hmm...before I started taking prednisone.  Now, I know I complained a lot about being on steroids in the first place.  There is a lot about them that sucks.  But I am now being made aware of the benefits of prednisone as well...primarily extra energy, motivation, and ability to eat.  And here I had thought I was just getting better on my own.  Oh well.  This doesn't mean I won't recover on my own without steroids (geez, at least I hope not).  It just means that first my body has to get used to producing its own steroids again and I'm going to feel crappy until it adjusts.  I will stay on this dose until June, so there is time.  The good news is: I have so far been allowed to keep the chipmunk cheeks.  Hoorah. 

In the wake of my ER visit, I had an appointment with my doctor and another CBC last week (that's a Complete Blood Count.  I don't know if I've ever explained that before).  My platelets had come up a little, and all my other counts were the same or better than before.  So any associated freak-outs have been kept at bay.  My cyclosporine dosage was lowered, then raised again and I didn't really notice any effects.  All I know is my hands still have a tendency to shake like leaves most of the time and I'm not counting on that to go away anytime soon.  Ridiculous hair growth continues unchecked.  Most recent location: the back of my neck.  I may actually get a real haircut soon! As for my counts, I have another CBC tomorrow so let's hope for the best. 

In other news, my family was here this weekend and I had enough energy to have a great time, and to dance to John Denver.  Luna had a fantastic time.  She hadn't seen Jo since we got back from Seattle, I think.  We may be moving.  We've been renting for much longer then we intended and are fairly close to finally buying a house, but we are still working on it.  I sure would like to feel kind of settled somewhere (this may be the first time in my life I've ever said- or even felt- that!).  I'm looking forward to seeing some friends I haven't seen in a very long time over the next few weeks.  Hopefully my next Ommaya doesn't screw that up.  I received the most incredible scrapbook from a friend of my aunt.  I can't even explain it.  It's a work of art.  If you come over, remind me to show it to you!

Well, I guess I should save my remaining energy in case I want to get up and walk across the room or something later :).  Hope everyone is doing well!  ~j

Joy, celebration, life I feel!

At least such are the musings of Yoda from one of my birthday cards this year.  I have decided to leave the card displayed prominently on my bookcase, because seriously, is there a better sentiment to wake up to every morning?  And even if you don't feel that way at all, it is difficult to look Yoda in eye and tell him that you don't feel it at least a tiny bit.  In the last couple weeks, I've actually been circling around that feeling!

Since a sufficient amount of time has passed since I thoroughly traumatized Brett with the story of the onset of my disease, I've decided its time to continue on with my mangled story.  I may have mentioned that my doctor's appointments are now every other week, which is a good thing.  It implies that nothing is really changing.  Oh, except last week.  First I had to have an immunoglobulin infusion.  Why yes, of course I'll explain!  *Be warned, this is all probably quite wrong since I just learned it myself.*  Until my new cells become adept at making antibodies (and I quit foiling their efforts by taking immunosuppressants), my IgG numbers, which are a collective measure of all my innate immunities, will tend to be low.  Now, these are evolutionarily ancient, non-specific immunities, like mucous membranes, tears, a number of blood cell, gut bacteria, skin, inflammation...basically just stuff that keeps stuff out.  Then there is the adaptive immune system with it's target-specific immunities and pathogen memory.  Those numbers, like my T-cells, B-cells, and lymphocytes and antibodies (for example) will come along on their own on their own time, and also when I start taking less pills! wonderful! pills!

SO, the infusion took about 3 hours and was a relaxing non-event.  The following day was the dreaded Ommaya injection, which at the time was also non-event.  Then all kinds of craziness hit the fan on Wednesday, I think?  I can't even remember.  The severe headache and backache was back, this time accompanied by constant vomiting.  By Thursday night, I was in such a state I begged to go to the ER...I knew I needed fluids in a big way as I couldn't keep any water or food down.  So my wonderful doctor arranged for my private ER room, where I was loaded up with IV goodies (actually, they had issues getting the fluids in and I ended up with only a small amount.  I missed my port for about 0.0367 seconds).  Also had IV painkillers and anti-emetics ...ahhh.  They didn't actually admit me and let me go home after I felt better.  I spent the next day in bed all day.  Literally.  My stepdad Jocko came down for the day today to help out too.  THANK YOU!!

I think a lot of things led to the severe reaction.  1.  I was a maniac on fire on Tuesday.  I walked to and from the clinic, picked up a bunch of paint at the hardware store and painted Luna's table and chairs, cleaned, and went househunting.  I hardly drank any water that day.  Looking back, it was probably a little too much.  2.  Apparently, my cyclosporine levels are high, which would explain the shaking like a leaf for the past week, and could explain the low appetite and vomiting.  3.  I was taking all kinds of painkillers on an empty stomach because I couldn't eat and what the heck else was I to do?  There isn't a single oral painkiller that doesn't make me sick.  I have lately been considering going the less synthetic route, if you know what I mean.   Will have to see about getting a prescription.  In the meanwhile, we have to figure out what to do about these injections.  Either I need more steroids during the 2-week course of the chemo release, or we should go back to the old way where I puke for 2 hours immediately, fall asleep for 4, and then go home.  But this newer more toxic drug is more effective than the old one, and I only have 2 more.  Decisions, decisions.

Then, on my Thursday ER blood draw, I found out my platelet counts have dropped by half.  So I'm going to go ahead and try not to freak out about that for awhile.  And here I hadn't thought about relapsing for at least a week.  Sigh.

Anyway, all else seems okay for now.  I have a few things to look forward to...which is nice and hopeful and optimistic and all that, but I am still too superstitious to write about them until they happen :P.  Love to all and hope you're enjoying the wonderful weather!!

Oh my goodness!  I forgot to mention that my podcast is up (shudder): http://www.patientpower.info/program/keeping-hope-alive-alternative-options-for-bone-marrow-transplant

Last part of the whole story (June 15, 2010)

Again from Facebook, back in the day.
 
So things have gotten, I don't know, more intense in the last few weeks. I've had 2 rounds of chemo since we last chatted. Recovery feels harder from each round. I have remained cancer-free in my cerebral-spinal fluid (I have special chemo into my head for that, and it sucks HORRIBLY, but thankfully, it works) and in my peripheral blood (veins and etc.). I had a bone marrow biopsy yesterday to see if I've stayed in remission in my marrow and haven't heard the results yet. Lets hope I have, otherwise I'll need another induction (just like my first month-long chemo blast) before I go to transplant. Oh, yeah. About that transplant.

Out of 4 potential stem cell donors, none of them made it past the second round of testing. So, that they were not well enough matched, had past exposures to viruses and/or other disease, or that they just plain decided not to do it are all potential reasons they are no longer available as donors for me. However, 2 matching umbilical cords were found. Almost perfectly matched, really. UCDMC doesn't do a lot of UC transplants for adults, so my doctor has referred me to a facility with more experience, specifically, the Fred Hutchinson Cancer Research Center in Seattle. So, we'll be trying to arrange a consultation there absolutely asap. We would have to be in Seattle for 4 months, so they can monitor my recovery after the 1 month hospital stay. Interesting! The Hutch Center has awesome apartments for patients to rent, and insurance will pay for a good part of that. So I'm sort of excited. I've also read just about every paper about cord blood transplants and current research that I can find, and I am more than confident in the procedure. Although still, anything can happen. The transplant should start in about a month. Anyone been planning a vacay in Seattle this summer?

I suppose I should also address "How am I doing?" That is always a very difficult question to answer. I am okay, but I have a new definition of "okay." It involves being okay with a lot of random pains, weakness, and exhaustion. So I'm fine, but I still feel like I am sick to some degree all of the time. Generally I am okay with it, but sometimes it is incredibly frustrating and otherwise just pisses me off. This is something I no longer feeling guilty about...not always "being positive" or "keeping my spirits up." Sometimes my anger is a very productive emotion. I don't particularly care if that is "healthy" or not. I am still entirely determined to everything I can to get well. I am, however, always able to shift my perspective to a more grateful and happy one when I am really down in the dumps. It might take a day or two. Yoga has taught me a lot about that. I feel very fortunate to have the extension of time I already have had (I probably would not have made it this far without treatment). So much quality time with family and friends. Also, insurance will pay for wigs, I just discovered! I have bought 2 and am probably getting one more. They are so fun!!

I plan on letting everyone know when we finalize transplant plans, and keeping in touch through the process. But you should remain dubious that I will be very good about that. I'm almost done reading Sookie Stackhouse books, so I'll certainly have more time, anyway.

Love to all and thanks again so much for the help and support. It has been invaluable. A special thanks too to those who have gotten involved in LLS and Team in Training. I get teary whenever I think about it; and I don't even know what to say. So thanks a lot :P ~jq

For the record, I did stay in remission.  For those who are really not paying attention, I did go to Seattle and have a transplant.  Also, the "shifting of my perspective" from anger and frustration when things got rough got harder, and harder.  Acceptance helped.  I seem to be much better now.  We are now officially caught up.  Next blog we will return to our regularly scheduled programming.