February 28th, 2015

Surprise Bone Marrow Aspirate OR “Surprise: Bone Marrow Aspirate!”

A few days ago, I went into the BIC, the outpatient bone marrow infusion center where I’ve been receiving chemotherapy since I last left the hospital.  They do labs in the BIC, they perform procedures, they give chemotherapy, and they have a freezer full of orange sherbet.  When last there, I met with Ben, the oncology psychologist, who I like a lot, and I got labs drawn. 

The BIC isn’t a bad place.  I like it when it runs smoothly.  And when they’re not out of sherbet. 

That being said, we’ve had a couple of scheduling mishaps, where we’ve ended up sitting around for four hours instead of a typical hour-and-a-half appointment.  And while we like everyone that works there, there never seems to be anyone that’s in charge of planning what I’m supposed to be doing in the future.  We (Mom, really) always seems to need to all-too-frequently rattle some cages.

This was the case earlier this week.  I’d finished all my chemotherapy for this session (phew, off that steroid Dexamethasone that spiked my blood sugar like crazy) and I had a seemingly ambiguous re-admittance date of March 5 floating around.  What was I supposed to be doing in between now and then?   Ben, helpful as always, told us he’d track down my doctors (not usually visible to the naked eyes of patients) and find out what, if any, plan there was for me between now and March 5. 

Almost as soon as we arrived home, we (my mom) received a call that all my invisible doctors had met that very morning and decided I needed a new bone marrow aspirate.  But nobody told us; which was frustrating because no one seemed to know when I could actually go through the procedure. By the time my mom received the call, almost everyone had gone home and it was too late to schedule anything.  The person on the other end of the phone indicated I could get the bone marrow aspirate the next morning (surprise!) or not for some time (ambiguous!).

The sense of cessation of even a small amount power, be it for scheduling or defending what medications I need to be on, or even to have some confirmation that those invisible docs can hear us–creates a huge feeling of instability.  There’s really not much I can do other than follow what the nurses tell me I can do.  But there’s this little bit more stuff we should be able to do that we rely on to feel like we’re affecting the process.

The bone marrow aspirate is the one where they drill into my pelvis and remove bone marrow, the fluid around the bone marrow, and a long-ish piece of a “core” of bone.  I’ve had this done three times now with this bout of leukemia; the first time with no pain medication and simple assurances that, “it wouldn’t be so bad,” which was awful.  The second time, I was on a very minor amount of pain medication (not as awful, but still pretty awful).

Whenever I–or we– brought up the possibility of anesthesia or at least stronger pain meds like those used at other hospitals, we were met with looks of total consternation. Why would we want those things?  The procedure was utterly painless according  to what they’d said before–how could they be wrong?

Luckily, there’s a new program in place for some (“Those Levins won’t stop going on about this!”) where they administer some mild and useful anesthesia.  The whole process seemed to go easier and smoother–which may have also had to do with the nurse practitioner listening and caring to what I said. The whole process was about twenty minutes but I can recall about five. 

We were called back in on Friday with little expectation of who we’d meet with or why we were even going to BIC (typical BIC). We did know that the first slide from my bone marrow aspirate should be be back, and while not explaining all of the details–could potentially reveal If I was in remission or not.

One of the people we ended up meeting with was a nurse practitioner to whom we expressed our concern about my ambiguous March 5 readadmit date and what I was doing before then.   Luckily, she was one of the nurse practitioners who was able to both see and communicate with my invisible doctors.

As it turns out, since there’s no apparent calendar in the BIC, one of my doctors was leaving us a message at home rather than visiting with us directly. When the nurse practitioner discovered this, she got information on my first slide which she brought back to us (although the doctor stayed behind).  Unfortunately, the slide showed that I’m still leukemic. But only 1.30%.  That’s down from an initial 90% to then 30%. 

While I would have preferred to have no leukemia at all, which would have allowed me to go straight to the bone marrow transplant, I can live with these results.  I’m going back on the chemo protocol I just finished, which I tolerated decently–it was only four days of inpatient and the rest outpatient at home (delivered at the BIC)–and any time at home beats time at the hospital.  Even (and maybe especially) when I’m feeling lousy.

The bigger, better news is that with counts like that, one more round of chemo will almost certainly put me into remission. My sisters will be able to come into town, someone (likely not an invisible doctor) will take Rachie’s stem cells, I’ll get some radiation and some more chemo and I’ll get those precious stem cells.  I’ll be in isolation for three or four weeks, while we trick my body into giving me the leukemia-void immune system I’ve always wanted.  

I do wonder, since the stem cells are coming from Rachel, if I’ll gain any of her other traits.  Like being able to stretch crazily, or having strawberry allergies, or growing long, blonde hair.

And that March 5 date?  Well, now it’s going to be the more ambiguously BIC-like March 4.  That being said, it turns out it’s just for me to recover.  No chemo, no BIC, no hospital.  Just being home. I’m okay with this. 

NEXT: “Loved And Blessed By My Friends”

February 23rd, 2015

My Beautiful New Cousin: Some Wonderful News.

My new cousin Mara, daughter of my cousins Brad and Mandy, is wonderful in every way. She’s an absolute beauty.

I can’t put into words how absolutely honored I am by her name.

Mara Reid Blann

I can’t wait to meet her!

February 21st, 2015

Back In The Hospital, Rituximab (Mouseatouille), And Home Again (But Different)

I returned to the University Hospital last Wednesday as soon as they had a bed for me. I arrived around 2:00 in a room just down the floor from the one I’d been in the month before. For some reason, they had to spend hours checking me in again by explaining the hospital and how hospitals work and that we were in a hospital. That kind of stuff. Then it happened to reach shift change before we could start my non-chemo chemotherapy, Rituximab.

Rituximab is non-chemo antibody that unlocks the blasts in my blood to make each blast easier to kill by the chemo. Blasts, for those that don’t don’t remember, are the big, bad groups of colluding white cells exploding in my blood causing leukemia.

What I didn’t know until the time of giving of the Rituximab was that it had it rat DNA in it. Or more correctly, I learned later after my mom did some research that it had mouse, monkey, and human DNA in it. Okay. That’s fine, I wasn’t the first person to get this odd combination of antibodies and it certainly sounded like it would help the chemotherapy destroy leukemia blasts, the ultimate goal of going through this entire process.

The night staff turned on the Rituximab and I started feeling flushed, but that’s no big deal. Then my ears turned bright red and became painfully swollen. Then my nose. Then I became horribly nauseous and I couldn’t get my nausea medication because they said I’d taken it at 11:30 AM that morning before I even got there–how is that possible!? [arms flailing like Kermit the Frog] It was terrible. I was miserable! How could a little mouse DNA, monkey DNA, and human DNA do this to me? I don’t know, but it did it, and it was horrible.

Finally, we figured out as I was receiving help(?), they were also turning up the dosage to a fairly high 400x. They finally shut the whole thing down, because I was not doing well (as indicated [above]). After clutching a pillow for some time, I came down from this mouseatouille cocktail, and they decided they could give it to me overnight as a drip–literally, a medication being automatically dripped from its bag over a certain period of time–in this case, very slowly.

After that adventure, I had a pretty adventureless stay in the hospital. I received six doses of Cytarabine, a chemotherapy drug. It works by killing cancer cells by interfering with DNA synthesis. Six doses took four days; they were big doses. Even bigger were the bags of prophylactic medication to protect my kidneys, since Cytarabine likes to mess up the kidneys like it likes to interfere with DNA synthesis of bad cells; which is to say a lot.

I also had my Ommaya reservoir tapped. Ommaya reservoirs are a catheter system that sit atop the head under the skin and enter into brains (such as my brain) so that patients like me don’t need to get lumbar punctures all the time. I’m lucky mine was installed the last go around and that they’ve managed to use it (mostly well) this time around. I have to mention the number of people that asked me why I didn’t get it removed in the years between my two battles with leukemia. It’s not unsightly–it’s covered by where I normally have hair–but people were concerned about it for all kinds of reasons. Even I got irritated with it because when my skull plates shift a bit, it gives me a headache. But I never thought of getting rid of it. Thank goodness.

When they tap my Ommaya port, they remove clear cerebrospinal fluid from around my brain and replace it with chemotherapy. The entire left side of my brain is covered in a chemotherapy chemical burn from this process. Specifically, from a drug called Methotrexate that I received roughly a million times my first ride around leukemia. It’s given me tremors in my right hand, my head, and sometimes tics on the right side of my face.

So when I heard my port was going to be used for Methotrexate again, I said, “sure thing!” Or, at least, “how much worse could it get?” And as far as I’ve noticed, I did not get worse. Hoo687$%ray!!!

I woke up on Sunday to my new day nurse exclaiming, “congratulations, you get to go home today!” This came as a surprise for two reasons: 1) I thought I had to stay in the hospital until Tuesday, and 2) It’s weird how some people deliver good news like an alarm clock would. But it was good news, so I was happy and didn’t mind being woken up. I don’t sleep well or long in the hospital, anyway (unlike MOST people, I’ve been told).

Along with all the discharge mumbo jumbo (“this is a house, this is how it’s different from a hospital, this is your house, this is the hospital we’re in right now”), I received two parting infusions. The first is called Vincristine and the second, Doxorubicin. Both were chemo drugs I’d been on during my previous battle with leukemia, though I didn’t remember the effects either had on me.

So I went home, enthused, memories of my last trip fresh in my mind. My last trip home had energized me to the point of being able to walk around the entire chemo floor several times a day. I smiled a lot more at people (I got a lot of comments on this). And I could actually remember what went on for all the days I was in the hospital. In addition to my family visiting, I had some friends in for their engagement party and I can actually remember what was said; this wasn’t quite the case the first time around.

The enthusiasm quickly faded, though, as I realized this time I was not sent home to feel better, rather to feel worse. The effects of all the chemotherapies I’d been given in such a short amount of time hit me all at once and hit me hard. My body stopped being able to regulate temperature, so I felt hot and cold at the same time. I had intense bone pain (so intense, they sent me to get x-rays to make sure I didn’t have any fractures), and just generally to feel crummy.

In addition to going home, I started visiting the outpatient clinic three days a week. Just to make sure I didn’t get any of that restorative magic from my first time home, I had Cytarabine put in my Ommaya, an infusion of Vincristine, and a four day prescription for Dexamethasone (a steroid with which I have some contention).

A doctor explained to me that they were scared the leukemia would grab a foothold before we could start BMT. This makes sense to me, and again fits with the ultimate goal of going through this entire process.

Even though I can admit to liking the adult strategy of hitting me with a big stick to get the leukemia out as fast as possible–as opposed to the pediatric protocols of being on chemo for three-and-a-half years–I just wish that what I was going through was a little more comfortable and a lot less painful.

Slightly edited 2/22 for factual accuracy (facturacy).