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.

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.

 

All blog content copyright © 2013 E. Palmberg. Guaranteed 100% brave and freaking noble.

HECK yes, *you* need health insurance

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 emergecies*, 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.

All blog content copyright © 2013 E. Palmberg. Guaranteed 100% brave and freaking noble.

Prayer, Science, and Pointy Things

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.

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.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Five Stages of Chemo Hair

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

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.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Mhaaaaa-ROWR! I’m a Chimera

Pearson Scott Foresman/Wikimedia/public domain (altered)

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!

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.

Your Results May Vary

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.

your results may varyAlthough 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.

Copyright © 2013 E. Palmberg. All blog content guaranteed 100% brave and freaking noble.