Tag Archives: bone marrow transplant

Five Stages of Chemo Hair

Your results may vary. Especially if you do not start off with a pixie haircut.

As this is my second time surviving cancer, I knew a few things about hair loss–for example, I remembered that when my hair started to come back in it would look black, but then eventually transform to my normal red color (with a few, ahem, platinum blonde strands). But I forgot that different follicles start at different times, so you have a few pioneer hairs at first, and they look kind of lonely. Then the other follicles kick in and you get a hybrid between a buzz cut and a five o’ clock shadow, which I have slanderously called “unkempt Marine.” In reality I’m sure Marines’ hair is kempt, because all their hairs got cut at the same time.

Generally even hair length, plus hair that curls, is what enabled a good friend of mine who shaved her head one time to develop adorable little ringlets all over her head. That’s what I was hoping for the first time I was recovering from chemo, but this time I know it ain’t gonna happen. But eventually I’ll get back to pixie, and when I do I’ll count my blessings.

Wow.

I just had a couple former Sojo colleagues over for dinner. One of them, Jen, had signed up for the bone marrow registry after I urged everyone I knew to do so, and now, though they need some more tests to be sure, it looks like she’s actually been matched and asked to donate.

This totally flabbergasts me. All she knows about the potential donee is that he’s a 30-year-old male overseas with MDS, and that she might well save his life. If he has MDS that young, he might have a history really similar to mine–getting MDS as a result of earlier chemo, which could well have been for Hodgkin’s lymphoma (since this is one of the cancers that strikes younger folks).

Only, unlike me, I guess he doesn’t have a parent or sibling who’s eligible to donate.

Between writing the line above and this one, I’ve just been staring at the screen blankly and tearing up.

I’m SO proud of Jen, and her awesome Catholic employer which let her take a day off for testing right after she started working there, and of all donors. They are amazing, and if you are between 18 and 44 and not a cancer survivor yourself, you should go sign up for the registry right now and get your cheek swab kit mailed to you. Most people never get asked to donate, but if you do, you could save a life.

If Jen’s donation does go through it sounds like odds are she’d be asked for stem cells (the pretty low-impact process I described here), but it might be actual marrow (where they go into your hip bone to take 1-5% of your bone marrow, as they did for my sister who donated to me, and which can take several weeks to fully recover from–thanks again, sis!)

Either way, this is literally awesome, in the sense of inspiring awe.

Moment for Celebration!

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Today my bone marrow biopsy came in looking “beautiful,” as Dr. Concerned put it–they could not see any cancer cells in it! (They are still doing the genetic tests, but it’s unlikely they will turn up anything bad, since the tests they did already are good). Yay yay yay! I should have know the biopsy was good the minute I saw Dr. Concerned, because she was smiling (beaming, almost) rather than looking concerned. My awesome dad came into town to go to the appointment with me. Thanks, Dad!

I’m definitely not out of the woods yet, as my cancer could recur–myelodysplastic syndrome does this too often, especially in the first couple years after transplant. I’ll be getting regular bone marrow biopsies for follow-up–hopefully from Nurse Practitioner Brusque Yet Friendly, whose skills are excellent at holding down the extreme-pain-time to just the first pull of marrow. Although Dr. Virginia did a particularly good job the last time he took one, too–when he was putting the needle into my hipbone I thought he was still just putting in the lidocaine. Until the first pull. But hey, bone marrow biopsies only last a few seconds, and have the positive effect of enabling me to feel all hardy and survivor-y.

mmmm…Union Market.

Anyway, the point is, so far, so good! I’m really grateful to God and to everyone who’s been praying and offering emotional support. Now I just concentrate on recovering my energy, avoiding sunburn, and being careful as my immune system recovers.

And on food. After the appointment Dad took me to Union Market to stock up on some flavor. (Yes, I know gentrification is complex and often problematic, but I want a $30 bottle of balsamic vinegar, darn it!) Unfortunately, the pate de campagne has to wait another four months at least, as I’m too immunocompromised to eat deli items. And Dr. Concerned vetoed soft cheeses for now. But we had some Takorean (yes, bulgogi in tacos…it’s really good. For real, try it if you get the chance.) We also got me some groceries, including some “heartichino” sausage from Red Apron Butchery, which I later cooked until it would have made Nathan Anda’s heart very very sad, but my oncologist’s reasonably peaceful, to see it–and it still tasted a-MAZ-ing. Thanks, nose-to-tail foodie charcuterie trend!

Happy weekend, everyone!

Home at Last! Also, I’m a Vampire.

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Many thanks to my fantabulous boyfriend, my sister, and my friend Sue for moving me out of the patient hotel near Hopkins lickety split Saturday morning! I’m really enjoying being back in my place in D.C. and experiencing catheter-free showers. It does turn out that just because I’m in the same place doesn’t mean I have the same level of energy I did when I was last here, but all things in time. I went to my own church on Sunday, St. Stephen & the Incarnation–they’d been bringing me the Eucharist each week, but being there with people (even though I have to sit over to the side and wear a face mask).

And, of course, most thanks of all to God, for bringing me through the transplant process so far!

My sun-deflection gear so far…

In other news, it’s come to my attention that I’m sort of a vampire–fortunately, not in the soulless-being-who-goes-forth-at-night-to-feed-on-the-living sense. Not even in the living-on-other-people’s-blood sense, though I guess basically all my blood derives from my sister’s marrow (and will, Lord willing, for the rest of my life).

No, I’m thinking about sunlight. For most of my life I’ve avoided getting sunburns, pretty well. As a fair-skinned person I know I’m susceptible to melanoma, not to mention short-term burning, pain, and peeling. However, now that I’m a chimera it is the case, and I quote directly from the hospital discharge packet, “even mild sunburn can trigger severe, life-threatening GVHD”–graft vs. host disease.

That’s right–a single mild sunburn could KILL me. Probably won’t, but could.

If all goes well, I will have decades and decades to be vigilant about this. I made a start today by ordering some wicking long-sleeved shirts for hot weather. Tomorrow I research sunscreens and order some more hats to supplement my current vampire gear.

Mhaaaaa-ROWR! I’m a Chimera

Pearson Scott Foresman/Wikimedia/public domain (altered)

Yesterday I got some great news: I am a bona fide chimera! Fortunately this means not that I’m a goat with the head of a lion or some such, but rather that I’m a mixture of original me-flavor cells (everywhere but the blood and marrow) with new-and-improved donor-flavor blood. This was exactly the goal of the transplant. The test (for which they’d taken blood a week earlier) showed I’m 100% donor in my peripheral blood (i.e., blood in general) and 94% donor in my T cells.

I briefly emailed Dr. Concerned and Dr. Virginia the news, and they said it was “fantastic” and “great” respectively. I’m especially psyched about Dr. Concerned’s response, as she’s the big fancy transplant expert.

Of course, this is just one step along the journey–it’s certain that a few of my original marrow cells, including some of the cancer, is in there someplace (especially as I just got a “mini” transplant; after the chemo I got in 2006, my body couldn’t handle the full myeloablative fry-the-heck-out-of-your-old-marrow treatment). So the goal is for my new immune system, now that it’s up and running, to go after the malignant cells.

In other news, I have a mild rash which is moving around random parts of my body (leaving some places as it shows up in others). It’s annoying and itchy, but it’s likely a very mild case of graft vs host syndrome, which it turns out is actually a positive thing–it shows that the donor cells are feisty in there. In 25 days (at day 60 after transplant) the doctors will take a bone marrow biopsy to see whether the new marrow is doing the right thing and wiping out the residual cancer cells. They will also discharge me back to DC on day 60 (although the biopsy test results will, if past experience is any indication, not come back for all eternity in subjective time, and maybe a week or so in objective time).

Oh, and today I got to stop taking one of the most annoying drugs (the one where I had to get up at 6 am and also to not eat for several three-hour swaths of my day, and it irritated my stomach). So, I’m grateful for that also. Yay!

Goal: Not-I 95!

I’m happy to report that, at day 26 post-transplant, my white counts have really shot up–they were 2.73 yesterday, with the ‘phils 2.10! My platelets have started going up too, and reached 41 yesterday (a little over a quarter of the normal level). The red blood cells are the last to go into production after a transplant, and haven’t started going up yet–I got a transfusion of them yesterday to carry me over (after a couple days of being pretty wilted), and feel much better today. I will need to wear a mask outdoors and be very careful about infection for at least six months, as apparently the T cells (an important kind of white blood cell) take that long to come back, but it’s great to have way more immune system now than I did a couple weeks ago, and to know that there is very active marrow–hopefully my donor’s–doing its thing hidden away in my bones.

Speaking of which, this Friday they’ll take some blood to test how much of my blood is being made by my my donor’s marrow–the goal is for her marrow to be at least 95% of what’s in there, with no more than 5% from leftover marrow of my own. (This will facilitate the whole point of the transplant, which is to replace my old immune system with a new one that will, Lord willing, recognize and destroy the malignant cells I got diagnosed with last fall).

I asked all my friends and family to pray for “not-I 95” (except for my donor, whom I asked to pray for I-95). It will take a week for the test results to come back, so looks like it might be time for another test result wait hymn sing.

Welcome, Phil II!

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Congratulations, doctors and me–it’s a bouncing baby Phil!

I’m delighted to say that, in the last few days, there has been growing evidence that Phil II is starting to wake up and kick into gear. My immune system is still quite weak–the [neutro]Phils, or first line of defense against infection, are still less than half the normal range of 1500 to 7800 per cubic millimeter. The rest of my white count, which has not been stimulated by shots like Phil has, is functionally nonexistent. But all this is a heck of a lot better than the “less than 50” reading (which is the lowest reading available) I’d been getting for about two weeks, and it means that the donated marrow is probably waking up (testing in a couple weeks will show how much of the marrow is original flavor, and how much is the grafted donation).

I still have to wash my hands a lot, but the doctors have already let me off several of the precautionary medications (antifungal, antibiotic) that they had me on while I had little immune system. So long, Polly!

Don’t Have Phil, Just Polly. And Faith.

Readers of this blog are aware of my on-again, off-again relationship with my neutrophils (first-line disease-fighting white blood cells), which I collectively call Phil. If the transplant works as expected, I’ll wind up with a bloodstream teeming with Phil II (cells made from my donor sister’s bone marrow, which will, Lord willing, gobble up the malignant cells in my own bone marrow).

When I finish tapering off the antinausea drug, I’ll only be taking *15* medicines! Unless they start me on something else.

However, since the transplant process starts with serious suppression of my normal immune system, right now (at day 14 post-transplant) I’m in a period where neither Phil is anywhere to be seen–literally at undetectable levels, as the blood counts they do on me daily show. Hopefully, in a week or two my counts will start to come up, heralding the arrival of Phil II and all his platelet and hemoglobin friends. Right now (and for the past week or so) I’ve been getting platelet transfusions, washing my hands a LOT, and meditating up close and personal on “the assurance of things hoped for, and the conviction of things unseen.”

In the absence of Phil, the good folks at Johns Hopkins are offering me Polly to keep me company–well, really Poly. Polypharmacy, that is: the practice of giving people a whole lot of different medications (antifungals, antibiotics, anti-rejection drugs) at one time. I think I’m on literally 16 different medicines right now. The pharmacy folks gave me a handy chart of when to take them, which my caretaker sister reorganized into an even better chart, and we got this giant seven-day four-compartment-a-day pill case to keep them corralled.

Still and all, I’d rather have Phil. I hope and trust that those marrow cells are working away setting up housekeeping hidden within my bones, but seeing the numbers come up (and having an immune system) will be good.

I am getting my bone marrow transplant right this very minute

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Wow, this is probably the only transplant experience which one can actively blog through! Even corneas, which might be done under local anesthesia in some cases, don’t leave you sitting around free to use the wi fi.

Life-giving cells wend their way through tubes into my bloodstream!

But here I am lounging on this gurney like Cleopatra on her gilded barge, typing away on my ipad. Also, the gurney head goes up like a deck chair, and my non-donor sister is at hand to fetch snacks.

They run the marrow through a tubes using gravity alone, to keep the cells from being tumbled about and mussed. This leaves me plenty of time to meditate on how much marrow they got out of my donor. They are putting 1.5 liters into me, and very little of that is diluting stuff. How big are hip bones anyway? Family report says she is resting comfortably with no pain.

Because my donor was getting prepped for surgery this morning, she wasn’t there this morning when my caregiver sister, our dad, and I all got communion from the Weinberg cancer center chaplain. I really feel like I’m having my own personal secular Easter–lifesaving blood shed for me.

p.s. Dr. Concerned stopped by to say hi while I’m here too!

The Fire This Time

Image under Creative Commons license, Some rights reserved by Crazy Uncle Joe-MoPho

One way it’s no fun at all to be interesting is medically interesting. In getting set up for my bone marrow transplant I found out that the fact that I have a bit of radiation damage to my spinal cord, after the 40 gray of radiation treatment that helped cure my Hodgkin’s lymphoma in 2006, is just downright weird. Fortunately, it’s not a huge deal–my left foot is clumsy and I walk my mile a day with a cane to prevent myself from tripping periodically. Forty gray (yes, the standard unit of radiation makes me think of those big-eyed aliens from the X Files) normally doesn’t do that. Ergo, apparently, my personal system is weird and unusually susceptible to radiation, perhaps in some way linked to my family history of autoimmune disorders.

After a bunch of high-level consultations, Dr. Concerned and the other folks at Hopkins decided to leave the radiation (and the chemo agent Fludarabine, which can have neurotoxicity in rare cases) in my treatment plan. I was kind of relieved to hear this, since a pristine nervous system wouldn’t do me a heck of a lot of good if I died of leukemia.

Today I got the standard radiation–a lousy 2 gray, which is probably pretty unlikely to make my spinal cord worse. (Although they can’t tell me how unlikely, because I’m *interesting*!)

The process itself was pretty anticlimactic. First they dosed me up with Zofran (anti-nausea) and Ativan (anti-nausea and anti-anxiety), then they had me lie on my side on a gurney while they prodded me to exactly the right location. I would have thought it’d be easier to get someone arranged if they were lying on their back (as I was in 2006) vs. lying on one side with one arm under one’s head, knees bent, and the other arm straight out over one’s hips, but what do I know? Also, the arranging has to be done in near-darkness for some reason, like the start of Easter Vigil or a scene change during a play. I think they were lining me up with red laser beam markers. Eventually they covered me with a couple warm blankets, put a piece of tape from the wall to my shoulder to remind me to stay still, taped a radiation measuring gizmo to my back, and turned up the lights while a loud, protracted buzzing noise heralded the radiation. Eventually it gave way to a softer background noise halfway between a waterfall and someone fruitlessly trying to play a tune, wine-glass style, on shot glasses.

Then the arranging folk came in, wheeled the gurney around 180 degrees, had a bit of lights out prodding again, moved the radiation metering thing and put what may have been a protective thing on my neck, and wheeled what looked like a blackboard made out of plexiglass between me and the big radiation machine, which I could now see. It looks like the receiver of an old telephone, if the receiver were at least 15 feet long, and if half of it were melting into a modernist sectional sofa. I gather the radiation came out of the intact receiver end, which didn’t have a bunch of holes, but rather one big hole over which a couple black squares were affixed for reasons I never grokked. After it buzzed at me for another 20 minutes they came in to disentangle me and lower the gurney to the floor and tell me I was free to go.

I waited, however, until one of the techs came back so I could confirm with him that when, at the end, he’d said “oh no,” that was not something that had to do with my treatment, but rather with him pushing an unrelated button afterwards (I theorize he prematurely turned off the waterfall of shot glasses). Medical professionals, please use caution in saying “oh no” in front of people in treatment!

So now we’ll see what kind of aftereffects show up. I think nausea is expected, and fatigue. And being ready to receive a bone marrow transplant.

Drumroll please…

Well, I got my bone marrow biopsy on Thursday (along with a bunch of other tests), and sister who’s donating to me got a bunch of tests. The results we have so far look fine, so the key thing will be my bone marrow biopsy. If it shows that the Vidaza has decreased the amount of malignant cells, as I think is likely, we’ll go ahead with the transplant. I should hear sometime between Monday and Thursday morning (when I and my dad meet with the MDS specialist at Hopkins).

In between now and Thursday, the radiation oncologists will do some last-minute consulting about the total body irradiation part of the prep regimen, given my pre-existing radiation damage to my spinal cord (damage about which I’m not complaining–the lymphoma never came back, after all, and I can still walk a mile a day with a cane for balance).

I feel like I’m at the top of the roller coaster…

Transplant, probably. Sushi, probably not.

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photo under Creative Commons license from Lotusutol: www.flickr.com/photos/lotusutol/13075942/

photo under Creative Commons license from Lotusutol: http://www.flickr.com/photos/lotusutol/13075942/

Well, yesterday I talked to an MDS specialist at Hopkins (whom I do not have the energy to give a snarky nickname), and got moderately encouraging news. Let me, right up front here, say that, as is the case with all my major oncological appointments, I did feel as if my brain was working about as fast as I could run through hip-deep molasses. Although Dr. No-Snarky-Nickname is an excellent communicator, I probably got some things wrong as the mistaken preconceptions in my head collide with the words that were actually being spoken aloud.

On the plus side, it sounds as if we are likely to move ahead with the transplant, probably in April, although everything depends on a battery of tests in March. It appears that this transplant will be way less likely than my original autologous transplant to lead to secondary cancer in the future (or more precisely, as this is treatment for a secondary cancer, a tertiary one). So, yay for that!

On the downside, though my platelets were up some more, my white counts were down and (before he even saw them), Dr. NSN didn’t offer the effusive, definitive statement I wanted that my MDS can be classified as “responsive” to the Vidaza, which is a glorified status that lets you get your name in the paper, win concert tickets and other valuable prizes, and breeze past airport security without even taking off your shoes. Seriously, though, it is even better than those things because, apparently, MDS that responds to Vidaza also tends to respond better to other treatments (although this is all possibilities, and My Mileage Will Vary). Dr. NSN allowed as how If I had blood counts that were normal, at least for part of the month, would count as a sign of responsiveness, but the real gold standard is the bone marrow biopsy, which I’ll get in late March.

Dandy blood counts before that might be unlikely; my white count was down to a pitiful .7 yesterday (and again today at Dr. Virginia’s when I went for Vidaza). This strongly suggests that the big spike I had in early January (to levels I hadn’t seen since 2011) was only made possible by a confluence of two–count ’em, two–factors working together: 1) Vidaza’s primary effect of making my MDS less, and 2) the extra week I got between Vidaza cycles at Christmas, which gave me a break from Vidaza’s side effect of lowering white counts.

Disappointing white counts, but platelets keep going up.

Since Dr. Virginia says he wants to continue with the Vidaza full steam ahead–stomping on the malignant cells in my bone marrow is the most important thing–I fear I might not get up into the normal range again this month. There go my visions of going out for sushi, eating freely of salad, and attending crowded parties a bunch for the next couple months.

Dr. Concerned: the exact opposite of Dr. House

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My doctor at Johns Hopkins for the last seven years (including my first stem cell transplant and follow-up) has been a great person I’ll call Dr. Concerned. I’m happy to report that she is just as smart as Dr. House, but with an exactly opposite personality and, more importantly, the exact opposite way of working.

Dr. Concerned is the exact opposite of this. Image from Better Than News on Flickr.

Dr. Concerned is the exact, total opposite of this. Image from Better Than News on Flickr.

Watching House is a double pleasure: enjoying the banter and, still more, being grateful that one’s friends are not screwed-up people who devote all their free time to head games. However, I have the much greater pleasure of assuring people that generally doctors are well-meaning people and, more importantly, that they are willing to work together.

At Hopkins, a bunch of doctors all meet together to go over new patients and weigh in on treatment. This makes me feel very good, because brilliant troubled iconoclasts might make good tv, but as a patient I’d much, much rather have brilliant people working together as a team to deal with my unusual medical problem. I’m also glad, of course, that I don’t have to start bleeding out of a new part of my body three times consecutively, to create drama before each commercial, before being correctly diagnosed.

I think most doctors (other than a few egomaniacs) are willing to work together on the hard cases, although I wouldn’t be surprised if the U.S.’s crappy, often out-of-date medical records system sometimes impedes them from doing so as effectively as possible. (Fellow patients out there–*always* save your films and pathology reports!)

Dr. Concerned is clearly an even more empathetic person than average (though a little of that may just be the shape of her face, because it seemed to me she looked a little concerned even when giving me good news during routine yearly appointments). I’ll probably start seeing a different doctor at Hopkins who specializes in the kind of cancer I have now, but I’m sure going to miss her. Thanks for seven years of great care, Dr. Concerned!

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Tag Archives: bone marrow transplant

Five Stages of Chemo Hair

Wow.

Moment for Celebration!

Home at Last! Also, I’m a Vampire.

Mhaaaaa-ROWR! I’m a Chimera

Goal: Not-I 95!

Welcome, Phil II!

Don’t Have Phil, Just Polly. And Faith.

I am getting my bone marrow transplant right this very minute

The Fire This Time

Drumroll please…

Transplant, probably. Sushi, probably not.

Dr. Concerned: the exact opposite of Dr. House