Category Archives: My story

Why I haven’t blogged in a long time

So, the reason I haven’t blogged in a long time is that, in early December, I found out that my inpatient chemo had failed and that current medical science offers no chance of curing me–sometime in the upcoming weeks or months I’ll die of leukemia.

Well, ok, there is a super long shot chance of remission–I’ve joined a clinical trial, which has put a few people into remission for some period of time. But the odds of that are very, very low–single digit, in my guesstimate based on the nurse’s guesstimate, although my dad and boyfriend persist in being more optimistic. My main reason for participating in the study is that I just really hate leukemia, and what to do what I can against it in general. I can’t deal with the emotional whiplash of getting my hopes up about what the study could do for me–I’m sure if it puts me in full remission, I’ll cope with it just fine without extended preparation.

Anyway, facing very likely impending death, I decided to shift my focus to communicating with my friends individually, telling them how much I love them, and saying goodbye. It’s hard because I do have a lot of fatigue and a lot of friends if you count every era of my life, but I’ll do what I can and just count on the fact that, for those I miss, my friends already know I love them.

I’ve also been focusing on trying to think about Heaven, which is a bit hard because “what we will be has not yet been revealed,” but my sisters found some Bible verses about it for me for Christmas.

So, not much blogging likely to happen here for a while, except I do need to put up that design for a no-sew blouse you can take on and off while attached to an IV pole in the hospital. The world needs to know about that.

Peace and blessings!

Well, THIS isn’t good.

Haven’t been posting much the last month, because my blood counts were in a slump and I didn’t want to worry relatives who might be reading this. But now that horse is out of the barn door, since a bone marrow biopsy this week showed that, five months or so after my transplant, my cancer has come back. I won’t know until Thursday what the docs at Johns Hopkins are recommending for me.

Obviously, this sucks. It is really not what I wanted, and I was just starting to think that this whole crazy transplant vs. cancer thing might really be working out in my case.

I feel a weird sense of clarity, kind of like what I felt when I got diagnosed with this cancer last year. Partly it’s that I clearly need to focus on short-term goals: eating (I lost a few pounds in the last month of suspense, and keeping my weight up is important), staying connected with people, and being careful to avoid germs, and any risk of hitting my head while my platelets are so low.

Partly, though, it’s because I woke up Friday morning with the following song lyric running through my head:

In the shadows, frightened, we deny you, hiding, locking all our doors
But when you find us, you remind us–
You say, “All I have is yours.”

It is a good song (“Won Our Hearts”), and people should check out the album, by Chris Hoke/Tierra Nueva, on iTunes. Sometimes the recording quality is a little homespun, but that is because Chris is busy working on life-changing Bible studies with imprisoned gang members.

To be honest, at this particular moment I’d rather have more of a Proverbs/Psalms kind of vibe, with God healing my body and giving me long life here on earth and (in my case, adopted) children. And that could still happen–possibly through medicine or, as always, if God wills it. I’m certainly not giving up on either. But this song is what I get right now, so I’m sticking to it.

Raspberries with melted fair-trade bittersweet chocolate on the side.

I’m also taking this time to enjoy fresh raspberries (miraculously still available at the farmer’s market today though I didn’t get there till noon), not to mention showering without any tubes coming out of my body. Because everyone should enjoy those things.

…

HECK yes, you need health insurance

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Two weeks from today you can sign up to buy individual health insurance even if, like me, you’re a cancer survivor who would have had a zero chance of buying an individual policy under the current system. I say: good, because you need health insurance. This. Means. You.

This isn't about your feelings on Obama--it's about your feelings on unforeseen medical emergencies.

This is about *unforeseen medical emergencies*, not Obama.

I think it’s a shame that health-care reform has been labeled Obamacare, because then people project their feelings about Obama onto it. (Personally, I support many of his policies, but I’m strongly opposed to the killer robots.) But I strongly support the U.S. federal mandate–and subsidy–for uninsured individuals to get health insurance, which kicks in January 1 of next year.

I say this because, back when I was 34, it would have seemed reasonable for me to not have health insurance: I have never smoked a cigarette or been overweight in my life, and I have long eaten a diet rich in fruits, veg, and whole grains. Then I got cancer. Twice. No clue how I’d have paid for the chemotherapy or bone marrow transplant if I had not, fortunately, had good insurance at my job. What’s more, it would probably have taken a lot longer for me to get diagnosed in the first place if I’d had to pay out of pocket for primary care, and thus been reluctant to go pay for a doctor visit just based on a slight persistent cough and general run-down feeling.

It’s also true, by the way, that insurance companies have a fiduciary responsibility to their shareholders to try to avoid selling cancer survivors like me health coverage. Fortunately, I love my job and don’t particularly want to be self-employed, but if I wanted to start my own business before 2014 I’d be completely unable to because, as I mentioned already, I’m super aware of how people need health insurance.

I don’t blame health-insurance corporation officials for doing their jobs, but I am sure glad that, starting in 2014, the government is doing its job of requiring companies to sell insurance to people like me with pre-existing conditions. And that only works if everyone is required to have insurance, because that’s how insurance works. (Thanks to Obamacare, children with pre-existing conditions are already able to buy insurance.)

I’m pretty peeved that all of this has become a political football. Please read how health-care reform actually works, and if you don’t have insurance, sign up for it instead of taking some kind of principled stand for your right to freeload off the system if you ever get a serious illness.

Prayer, Science, and Pointy Things

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Well, I’m glad to say that I continue to do well medically, and I really appreciate that all the more because two very special people I know (including one who had been in a remission that raised hopes he might be out of the woods) have gotten bad news in their own battles with cancer. My prayers and best thoughts are with them, and with a couple people in similar situations whose blogs I’ve been following.

Actually, if you are a praying sort yourself, please pause for a moment now to pray for A. and T. (names abbreviated for privacy). They are both amazing people.

Other than praying, I’ve been preoccupied with a) resting, b) avoiding sunlight, c) resting, d) feeling very fortunate, e) a few organizing projects at home, f) resting, and g) researching the best ways to avoid sunlight.

Don’t mess with me–I have pointy things. Extremely small pointy things.

Also, a couple weeks ago I also started participating in a study at Johns Hopkins. It’s not the kind of study you get into when all else fails, but rather the kind where they are trying giving additional medicine to people who’ve had successful transplants, in an effort to cut the significant rate of post-transplant relapse into MDS or leukemia (and, if my MDS comes back, it will turn into leukemia). It’s the “hit it with everything you’ve got while it’s down” philosophy which is so inappropriate for, say, warts, and so appropriate for deadly malignancies. In this case, the extra medicine is more Vidaza (which I got as a pretreatment for the transplant), plus sargramostim, a white-blood-cell booster which will counter Vidaza’s effect of suppressing white blood cell production. Apparently, based on studying cells in the lab, the doctors have good reason to believe that these drugs work best in combo. When I got Vidaza before, of course, I was not eligible for white-cell-boosting drugs because they could have boosted the cancer in my bone marrow, but that cancer is either gone (in which case this is all overkill) or at undetectably low levels (in which case this could juice up my good, donor-flavor white blood cells to finish off the cancer and save my life).

Of course, we don’t know if it will work–that’s the point of it being a study–but they will keep very close tabs on me while I’m in the study.

The practical impact of all this is that, one week a month, I have to drive to Baltimore every weekday to get a Vidaza shot (because the study protocol is too rigid for me to get it at Dr. Virginia’s office). Also, I have to give myself a shot in the stomach for ten days running (that’s the sargramostim, which boosts my white blood cells). It turns out that sticking a needle into my own body is way easier than I thought it would be, but on the other hand it is a huge drag to mix up the drug–I have to draw a ml of sterile water from one vial, inject it into a different vial with the drug powder in it, shake it to mix, then draw a half-ml out of that vial to put into myself. I keep thwocking at the syringe to get rid of stubborn air bubbles that would throw off the measurement, plus the stupid syringes have the lid stuck onto the needle far more securely than the needle part is stuck onto the body. Fortunately I’ve only had them come apart when empty, so I could just start over with a new syringe and not waste the heinously expensive medicine.

In other news, something about the combination of drugs (and a blood cell dip which is apparently not unusual 60-100 days after transplant) completely kicked my butt during the week of Vidaza shots. Fatigue-o-rama. Thanks for being there, sofa!

Several people I know seem irked that the study is not paying my expenses (Kaiser is paying for the medicine, and I’m paying for copays and zipcar or MARC train to get to Hopkins), but personally I feel that these expenses are well worth it for something that could be saving my life. I think it is pretty cool that, if it does save my life, that information will help save other people’s lives too.

And, it does make me feel pretty badass to have my own homemade sharps container in my kitchen.

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.

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!

Your Results May Vary

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One thing I think it’s real important to keep in mind is that there’s a whole lot of random in daily test results sometimes. Today, I feel like a hematological rock star, because one of the nurses told me yesterday, “You’re a rock star for getting a high enough white count to be given tomorrow off of coming in” to the outpatient unit. But that’s definitely not the whole story of the past couple weeks.

Although my counts have been going up like crazy for the past three or four days, before that there were three or four days when my main clinician (whom I’ll call Nurse Practitioner Brusque Yet Friendly) seemed clearly disappointed that my white counts were stuck in the 700s.

And before that, there was the exciting first day when the nurse told me there were signs of marrow activity (a white count of .25), and my assignment was to be .40 the next day, but instead I dropped to .19.

Jesus helped me keep these reversals mostly in perspective (at least, to the extent of not brooding on them when I was supposed to be falling asleep), but it’s always a temptation to dwell on things.

Anyway, for today, yay! My white counts and ‘phils are technically in the normal range. But they’ll probably fluctuate some more (starting now that they’ve discontinued the ‘phil-boosting shots and put me on a routine antibiotic that will suppress my counts a little). And that’s ok.

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.

I Do Not Want What I Haven’t Got. Well, Not All That Much.

At almost exactly the same time that my ‘phils finally started coming up to measurable levels, my hair finally started to fall out. I knew this would happen, and frankly it was a bit of a relief to think that I could finally get through that and start growing the hair that, Lord willing, I will get to keep.

Old hair, this is the last day of our acquaintance.

It’s still not a nice feeling to run your fingers through your hair and put lots of it into the wastebasket, though. After the first day of this, my hair just looked flatter, but by day 3 there were only wisps left and I started to look like Gollum. Clearly, it was time to take action.

So I went to the “Image Recovery Center” here and got my head shaved, thus moving from Middle Earth to the early ’90s. That’s right–I went Sinead. Came home and listened to a couple of her albums on my headphones, as my caretaker sister inexplicably doesn’t like O’Connor’s music.

Since then I have been feeling a little more headachey, but I guess that will pass once I figure out the right mix of warm-but-not-too-tight scarf or hat.

Oh, and it’s only the head hair that falls out, not the leg hair. I’m very grateful that Cytoxan killed off the specific kind of donated marrow cells that would otherwise have launched a full-out attack on my liver — but the drug is kind of a petty bastard, side effect-wise.

You Kind of Had to Be There. But It’s Just as Well You Weren’t.

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I’ve been spending some hours each day in the IPOP unit at Johns Hopkins (or its twin the HIPOP unit). This “inpatient outpatient” model is awesome, as it means I can get all my daily tests and infusions (anti-rejection drugs; platelets and red blood cells as needed) while still spending the rest of the day in the comfort of my own little apartment across the street from the hospital.

The unit is divided up into little curtained enclosures so that immunocompromised folks can, once the curtain is closed, take off their masks and breathe freely without anyone else sneezing on them. Of course, curtains don’t provide a lot of sonic privacy, and as it happens all the enclosures have tvs, so from time to time you’ll wind up listening to your neighbor’s tv playing, for example, two episodes of “I Love Lucy” in a row (Golden Age? I don’t think so, but that’s why my sister brings my headphones for my ipad in the bag she shleps with me each day).

Today was the day I switched over from a 4-hour infusion to being able to take that particular drug in pill form (yay!), so I didn’t bother to put on my headphones as my sister and I waited for my daily blood counts to come back and for us to be dismissed. That’s why we were both at leisure to involuntarily overhear someone else’s loud, long speakerphone conversation, and keep cracking up at how wildly inappropriate it was to be overheard by people who might be stressed about their own bone marrow transplants. The person on the other end of the conversation appeared to be talking about someone else who’d had a bone marrow transplant also:

“so and so had a transplant… how did she do? Oh, she died… she had a visitor come over with a cold, and caught it … You better be careful, now! … blood all over her legs … ”

Unless I’m confusing the speakerphone lady with someone else, her cell phone ring was that classic blues riff: da DA da da dah. So when it rang again, I improvised the following in a low voice to my sister:

Da DAH da da dah
Oh cell phone lady
Da DAH da da dah
Getting another speakerphone call
Da DAH da da dah
Sharing all kinds of details
Da DAH da da dah
I don’t want to hear at all.

Well, as I said, it was just as well you weren’t there. But it was funny at the time.

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.

There Will be Beeping. Oh Brother, Will There be Beeping.

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The orientation nurse assured me and my caregiver sister that most everyone gets at least one fever during the you-got-no-immune-system part of the transplant process. My sister and I immediately developed a plan to, if I got no fevers, be smug.

So I felt some chagrin when on *Day Zero*, right smack out of the gate, the very evening of the day I got transfused with the donor cells, I got a fever.

Into the hospital I went, which meant that I was surrounded by caring and skilled medical professionals offering me lifesaving treatment and round-the-clock monitoring; that I had the ability to phone up and order surprisingly decent food delivered from the hospital kitchen to my room; and that I was chained by thin plastic tubes to an IV machine that WOULD NOT STOP BEEPING.

More precisely, it would go along for some time merely making whiffling noises as it metered out my saline solution or medicine, and then it would inevitably break into a beep loud enough to wake the dead, or at least the hospitalized. There were several annoying characteristics of this:
a) It was the same beep regardless of what was wrong–possible obstruction in my line, maybe getting to the end of my bag of chemotherapy, or whatever else the machine had a problem with.
b) It was clear that the loudness of the beep was not in proportion to the urgency of the problem, as it never summoned nurses to run in with a look of concern. Instead, it would just beep away as I found my nurse call button and pressed it so that the main nurse desk could hear my beeping, and at some point a nurse would walk in and press some buttons to make the beeping stop. To be fair, this meant the machine was already doing a great job of keeping air out of my line, so kudos to the machine makers there.
c) Every time I needed to go to the bathroom–and, as my time in the hospital included Days 3 and 4, when you get serious chemotherapy, I needed to go a lot–I had to not only tie on my shoes (my self-imposed strategy for not tripping and falling on my head), but also unplug the IV machine and chivvy it along with me, making sure not to stretch the IV cord that connected it to the catheter in my chest. It was not a fun contest to see if I could make it through all these steps in time. They literally never detach you from the IV machine while you are inpatient.

Long about Wednesday my fever broke and they released me back into the little apartment my sister and I are staying in next to the hospital, so I’m only attached to a machine for a few hours a day in the outpatient unit, when I’m actually receiving medicine. This provides me with a better vantage point from which to contemplate the amazing medical care I am getting.

Thanks, caring and skilled medical professionals!

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.

Chemo multitasking–not so much

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Well, my caregiver sister and I are settled in here in Baltimore, I got my catheter in Friday, and I started chemo yesterday. Today is day T-5, meaning that my transplant will take place on April 12.

I had been planning, once settled in, to immediately start catching up on email and blogging, but it emerges that, while the catheter placement was a walk in the park (twilight anesthesia is like the best yoga class ever), multitasking during chemo is not as easy as I’d thought. In order to keep my eating and drinking going ok (as there is some definite queasiness going on already), I’ve found it best to just read novels (or watch Downton Abbey) rather than engage in the slight amount of mental concentration involved in email or blogging right now.

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…

The Marrow Road

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[I just got around to asking Sojourners’ blog editor if I can reprint here blogs I post there… here’s something I wrote last December. In the meantime, I found out that my bone marrow donor *will* have to have the donation taken out of her hipbone–turns out that’s how they roll with haplo transplants at Hopkins, at least in my case. So I was wrong there.]

I’ve been thinking, as Advent goes on, what it meant for God to lay aside infinity and put on a body that was not just tiny, inarticulate, and helpless, but also already marked, to the marrow of its little bones, with the seeds of death.

He must have felt in his own flesh this dramatic comedown — from omnipotence and omnipresence to a being that had about threescore and 10, max, even if it hadn’t going to be cut off halfway by self-sacrifice and Roman capital punishment. And that must have given Jesus infinite tenderness and patience towards the waves and waves of people who, during his short ministry, were always coming up to him and asking, directly or just by their presence, for him to heal their bodies. In Luke, the Gospel focus of the new liturgical year, there are more than 20 healings by my count, compared to two times when someone asks Christ how to get eternal life (and only one of them actually wanted to know).

Those healings of all those bodies matter, millennia later. One big reason they matter is because healing matters. Another is because, by showing God’s power over death as well as by going through death ahead of us, Christ teaches us not to be dominated by fear of it.

All this is very personal for me. Nearly seven years ago, in April 2006, doctors gave me super-intense chemotherapy to cure my Hodgkin’s lymphoma. To help me survive the process, first they froze some of my stem cells (essentially, bone marrow, except that they filtered them out of my blood — actually drilling into bones is so 1990). Then, after the chemo and three days after Easter, they re-infused those cells back into my body to restart my bone marrow. I remember watching the tiny pink bag dripping through the IV, through which the seeds of survival would swim back into my veins, and then into my bones. Day by day, those cells moved invisibly inside my body, to grow and thrive.

Thanks be to God and to a lot of great nurses and doctors, they did cure my lymphoma. But now, as a late-breaking side effect, I have a different kind of cancer. (Yes, this sucks, but I’m still better off than if I’d died of the original cancer several years ago). So now, if all goes well, next year I might be spending another Easter in the hospital getting my own personal immunological rebirth. This time the point is to give me stem cells from a relative — cells that, Lord willing, will have an immune response that kills my cancer.

In my case, I have two siblings and a parent who are close enough to be stem cell donors — but there are many people in my shoes who don’t. That’s why, this Advent, I encourage everyone between the ages of 18 and 44 to consider joining the national bone marrow donor registry. It only takes an online survey and mail-in cheek swab to join. (Notwithstanding the name, in the unlikely event you’re matched and get the opportunity to donate, there’s usually no bone-drilling or anesthesia — just a series of shots to make your marrow overproduce into your blood, and then sitting next to a machine for a few hours while it filters out those lifesaving extra cells. I did this for myself back in 2006, and my main symptom was boredom).

As we prepare to celebrate God’s arrival in human flesh, as we start the liturgical year’s journey through a ministry in which Christ heals people’s bodies as well as their souls, there’s no better time to sign up to offer others the gift of life.

Reprinted with permission from http://www.sojo.net.

My small bit to fight individual obsessiveness/national medical costs

Although, as I’ve mentioned here and to anyone who’s asked me how I’m doing for the last five months (and a lot of people who haven’t), I’m pretty obsessed with my blood counts. So I am a bit proud of myself that today–when Dr. Virginia did not order counts for a routine checkup (because I had counts last week and will have more next week), but then said he could do counts if I really wanted to–I said no. It wouldn’t change my treatment any, and Dr. Virginia had just said he was fairly sure the Vidaza was working at least somewhat, so the mature thing was to not get more holes poked in my arms and more of society’s medical resources used up.

Of course, it’s a drop in the bucket compared to the necessary medical costs I’m incurring, but necessary things are what medical resources are there for.

It’s also a drop in the bucket compared to my general obsession with my blood counts, as witness my spending way too much time this evening making a scatter chart of them. These give my counts across the 28-day cycle as a percentage of day 1 of the cycle. For cycle 3 I had to extrapolate what day 1 was, as I only had days 5, 9, and 22.

cycle 3 = blue diamonds; cycle 4=red squares; cycle 5=green triangles. There was an extra month between cycles 3 and 4 (hence the stat for day 35).

See, the platelets have a nadir around day 16 or so, while the white counts have a nadir around day 28 (i.e., the time the next cycle starts, except in cycle 3, which had an extra week tacked onto it for Christmas). Cycle 4 (the red squares) is an outlier because that extra week let my counts come out of the Vidaza-side-effect slump. I’ve got my chart all set up to insert the data for cycle 6 and see where that goes…

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.

How’d ya like those data?

I love data–it’s fun to hunt down patterns in them. (Yes, “data” is a plural noun–this notice brought to you by the Rear Guard Linguistic Change Resistance League). So, needless to say, I’m obsessed with my blood count spreadsheet:

Green vertical lines are the start of a Vidaza treatment–for me, that’s seven weekdays in a row, every 28 days.

The Vidaza affects my counts in two ways. One, it demethylates my DNA so my body better fights the malignant cells that were making my blood counts fall. (I’m still thinking of this as mentholating my DNA and making it minty fresh, but I’m going to look up the chemistry any day now). The biggest disease symptom I had was lowered platelets–you can see in the lower graph that they were falling steadily before my first Vidaza treatment (the first green line), and overall they are trending back up.

The second way Vidaza affects me is by suppressing my blood counts. This gives me a “nadir,” or low point, after each treatment–in the case of the platelets, you can see that the low point is maybe 2 or 3 weeks into the four-week cycle.

But in the case of white blood cells of various kinds, the top chart, the nadir seems to be about four weeks into my four-week cycle. Every month, the white counts finally start to climb up a bit during the first week of the Vidaza treatment, then head down again as the Vidaza shots continue and the side effect gears up again.

Over Christmas, I got an extra week between cycles 3 and 4, so I could go home and visit my family for the holiday. Right afterwards, my white counts shot up–all the way into the normal range, higher than they’d been since fall of 2011. So, the good news is, that means that the Vidaza is pretty clearly working! That’s the main thing.

As I started to head towards my regularly scheduled nadir, my white counts took a plunge again. To put things into perspective, my white count low point last week was about the same as my high point the month before, so that’s not bad. Here’s the question, though: will I get a big white count peak again next week, due to the Vidaza having kicked in? Or, was the big peak made possible partly or mostly because I’d got a week off?

My counts next week will tell which is stronger, countswise: the primary Vidaza effect or the side effect. Either way, I hope I get the transplant (I’ll find out more when I go see the expert on Monday). But it would be nice to have high counts and the ability to eat salad and so forth for a little bit before I go for the heavy duty stuff.

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

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!

Another open note for Phil

More counts today–platelets went up some more, which I hope is a sign the Vidaza is working, but my white blood cells only went up a little, when I’d hoped the extra week off Vidaza for Christmas would let them reverse their downward trend over the last few months. And my neutrophils were just the same as two weeks ago. Phil, you don’t really mean to spurn me during the holiday season, do you? Let’s start the new year off right!

However, I’m grateful for a great Christmas back home with my family. As an extra bonus, no one had a sniffle, so I only had to wear a face mask in church (Christmas Eve service = crowded service).

Yay for platelets!

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So on Monday I saw Dr. Virginia, and he said it was “encouraging” that my platelets were continuing to increase (even on day 24 of my Vidaza cycle, a time when normally everything’s a little lower). Here is the chart that I had Excel make:

If you have MDS, I recommend making a spreadsheet of your blood counts to help see patterns–but also bearing in mind that there is apparently a lot of randomness in these things, so don’t assume that noise = signal (especially since decreased counts can be a side effect of Vidaza). So consult your doctor for help understanding your particular case. In my case, one of the clearest effects MDS was having on my counts was decreasing platelets–I didn’t start Vidaza until the start of October, and as you can see the platelets were dropping consistently before that. Now, they vary a bit during the Vidaza cycle, but are trending up. A hopeful though not definitive sign that this drug may be doing its job of getting me ready for transplant!

Dr. Virginia also said I could get on an airplane to go spend Christmas at my parents’ house with my sisters, so here I am. Yay!

My immune system is still super low, though (even more than before). Phil, come back–I know we can work this out…

Phil, Why So Distant?

[The kind of white blood cells that are the body’s first line of defense against infection are called neutrophils. I call them Phil, for short.]

Dear Phil,

You know, we’ve been through a lot together. For four decades, you’ve really looked out for me. When I first had cancer in 2005, and the chemo was getting to you, the nice doctors perked you right back up with Neulasta, and you even came back nice and fast after my autologous stem cell transplant. I’ve really appreciated it.

But now things have changed. I don’t know whether it’s the MDS or the side effects of the Vidaza, maybe both, but you’ve been getting more distant–real distant. It’s happened silently, so much so I almost wouldn’t have noticed you’re not there, but the doctor says I have to wear a mask on the Metro, and not eat raw food except fruit I can wash really thoroughly, and take my temperature a couple times a day.

Friends kid that I should just get a single sequined glove to go with the surgical mask, but I have to face the truth: without you, Phil, I don’t get around much anymore.

Sincerely,

Cherisheach

Doctors: Never Let Them See You Sweat.

I’ve put a lot of thought into trying to interact with doctors in a way that will get the most information possible. I’ve concluded that doctors have two modes: conveying information and trying to comfort you emotionally. Most doctors seem to feel antsy about the latter mode, and with good reason–I doubt they get trained for it, and even the ones who are good at it aren’t nearly as good as your friends and family, for obvious reasons.

Worse yet, once they get into comforting mode, it’s hard to get them to shift gears and actually give you all the information you’re going to want later. Getting information is tough enough as it is. Though I am smart and persistent enough to have got an Ivy League doctorate, I find I just think a lot slower when the topic is my own serious illness, plus the mistaken ideas or theories that are floating around in my head interfere with my listening. (My Ph.D. in literature helps me analyze this process later, but not, annoyingly, to avoid it at the time).

So it’s essential to a) have a list of questions, b) ask them again in a slightly different way if you didn’t understand the first answer, and above all c) avoid having medical personnel brand you as anxious. Fortunately, you don’t have to look perfectly composed or anything; it’s just preferable not to look like a bundle of nerves.

That was my mistake last week when I went to see my main oncologist (whom I’ll call Dr. Virginia because I schlep out to Virginia to see him). By and large he’s a great oncologist, but last Wednesday when I was getting my blood drawn before I saw him I made the mistake of mentioning to the phlebotomist how anxious I was about the counts (because I want to know if my Vidaza is working). So, they didn’t give me my printout of blood counts like they usually do; instead, Dr. Virginia told me verbally, and I didn’t get them all written down, and now I have to wait for them to show up on my medical-portal website to see exactly what they were.

At least I had my list of questions, and was able to get the answerable ones answered.

Have Cancer? You Are Now Officially Brave and Noble

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The first time I survived cancer I noticed that a large number of people told me I was brave. As I was actually pathologically anxious, this was a little disconcerting, as it made me feel as if people were not paying attention. (I know, being brave often means making tough choices despite fear–but all I chose was to do exactly what my doctor told me to, because I was scared of dying, so that does not count as exceptionally brave.) The best I can say for myself was that I was not afraid to ask for prayer or help, but as I have pretty much no innate sense of medical privacy and I really needed help, this too was much more survival instinct than courage.

Eventually I gave up on trying to convince anyone that I was not brave or noble. If you have cancer and do not happen to be brave and noble, I recommend not arguing with people about this. Yes, it’s annoying that people are misperceiving you, but there are way worse labels you could get stuck with. Besides, there is nothing you can do about it—if you spat in someone’s eye, they would probably interpret that as a brave and noble triumph of the human spirit over the dry mouth that comes with chemo.

Basically, when people say “you’re so brave,” here’s what they mean:

“Our society has focused so much on separating us from any familiarity with death—by worshipping youth, by walling off death behind hospital doors, by displaying dead people at funerals only in an embalmed and painted state—that I not only fear death, but also have no experience thinking about it. People in previous centuries hoped to see death coming days or weeks in advance so as to have time to compose their souls to meet their Maker, but I hope to die instantly in my sleep so that I’ll never have to think about death even for a minute. Therefore, the fact that you may be thinking about death makes me regard you as someone somehow separate from and more powerful than me.”

Or,

“Consumer society encourages me not to think about God, the sacred, or anything more transcendent than romantic love (which is the most transcendent thing that can still be used to sell a car or a bottle of soda). Death reminds me of the transcendent idea of the afterlife, so when I personally encounter someone who might encounter death, particularly at an earlier age than expected, I see that person as having a numinous aura around her, which I vaguely interpret as nobility and courage.”

Or,
“I feel empathy for your pain and want to say something encouraging, and I’m either not religious or I’m afraid that if I tell you God is with you I’ll be pushing something on you which you might disagree with. Our society believes in selves far more than it believes in God, so I will offer your self words of praise, even though they might not be remotely accurate.”

There you have it: it’s not about you. It’s just something people feel compelled to say. Ignore it and move on.

Besides, if my experience is any indication, eventually surviving cancer may make you somewhat more brave (not sure about the noble).

Second time’s a blog.

When I survived Hodgkin’s lymphoma six years ago, everyone kept asking if I was going to write about it. And heck no, I sure wasn’t. I believe that God is there for each one of us every minute of every day, but the way God chose to be there for me at the time, when I first got diagnosed and then again after the first-line chemo failed, was to give me grace to be merely pathologically anxious rather than batcrap insane.

Probably God was offering more than that … I may have a leetle bit of a history of difficulty internalizing grace.

Anyway, in 2006 the nice folks at Johns Hopkins gave me chemo so strong that first they had to take out some of my stem cells (bone marrow, but without the bone-drilling) and freeze it so that afterwards they could re-infuse it back into me to re-start my immune system. I slowly got back some hair and energy and normal blood counts, and went back to my dream job at a progressive Christian magazine, and after a couple years it started to become clear that my lymphoma was, against the odds, cured. And a year and 10 months ago at the Catholic Worker I met a pacifist with a Ph.D. who writes good poetry and goes to church even more often than I do, and we’ve been dating.

Then, just as I was planning a big six-year hey-they-cured-my-cancer party, it turned out I have cancer again. It’s myelodysplastic syndrome (MDS), abnormal cells in my bone marrow which will turn into leukemia unless cured. So, after four to six months of preliminary treatment, I’m going back to Hopkins for a “mini” stem cell transplant, with the goal of donor marrow (from one of my sisters or my dad) having an immune response and destroying the malignant cells.

This time, I feel weirdly calm most of the time—which is, as someone at church pointed out, literally peace that passeth understanding. Also, I seem to have some of the deep thoughts that everyone expected me to have last time. Hence, the blogging.

Here’s the main deep thought: Cherish each moment, even the ones that suck. I’ve experimentally verified that you can’t predict the future, but you can screw up the present moment obsessing about the future. Or you can be present in the moment, whether you’re weeping or worshipping or eating a carrot or looking at a glorious dandelion or just breathing.

Presence takes practice. But it’s so worth it.

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.

Category Archives: My story

Why I haven’t blogged in a long time

Well, THIS isn’t good.

HECK yes, you need health insurance

Prayer, Science, and Pointy Things

Five Stages of Chemo Hair

Mhaaaaa-ROWR! I’m a Chimera

Your Results May Vary

Goal: Not-I 95!

I Do Not Want What I Haven’t Got. Well, Not All That Much.

You Kind of Had to Be There. But It’s Just as Well You Weren’t.

Welcome, Phil II!

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

There Will be Beeping. Oh Brother, Will There be Beeping.

I am getting my bone marrow transplant right this very minute

The Fire This Time

Chemo multitasking–not so much

Drumroll please…

The Marrow Road

My small bit to fight individual obsessiveness/national medical costs

Transplant, probably. Sushi, probably not.

How’d ya like those data?

Bit of a Dip

Whoo Hoo!

Dr. Concerned: the exact opposite of Dr. House

Another open note for Phil

Yay for platelets!

Phil, Why So Distant?

Doctors: Never Let Them See You Sweat.

Have Cancer? You Are Now Officially Brave and Noble

Second time’s a blog.