Category Archives: My story

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.

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

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.

I do not want what I have not got

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.

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

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

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.

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

Welcome, Phil II!

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. Welcome, Phil II!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!

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

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.

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.

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

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

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!

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

I am getting my bone marrow transplant right this very minute

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!

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!

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