Category Archives: My story

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.

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.

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

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.

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.

 

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

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.

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.

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

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

Dr. Concerned: the *exact* opposite of Dr. House

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!

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

Another open note for Phil

platelets red blood cells from Nottingham Vet School

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).

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.

Yay for platelets!

Image

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:

Image

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…

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

Dear Phil

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

 

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.

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.

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.

Have Cancer? You Are Now Officially Brave and Noble

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).

All blog content is copyright © 2012 E. Palmberg, and is guaranteed 100% brave and freaking 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.

All blog content copyright © 2012 E. Palmberg. Guaranteed 100% brave and freaking noble.