Well, I’m not going to bury the lead, as we would say in journalism classes. My surgical biopsy results are what I expected, but not what I hoped, and I still have some remaining Hodgkin’s lymphoma. The official term is refractory. I started chemo again yesterday.

The usual second-line treatment is ICE (ifosfamide, carboplatin and etoposide), administered over three days in the hospital, twice, 21 days apart. Instead, I’m taking part in a clinical trial of Brentuximab vedotin, a fairly new drug that’s being studied as a less toxic alternative to ICE and a line of treatment doesn’t require a hospital stay.

The goal is to get a PET scan that shows no activity before an autologous stem cell transplant (ASCT), a three-week hospital stay that involves high doses of chemo. Beforehand, stem cells are removed from your own blood and preserved, then given back to you after chemo to prevent bone marrow failure and produce healthy new blood cells. (This part doesn’t sound like any fun at all.)

I really just want to get it over with, so my initial leaning was ICE. The Brentuximab vedotin’s side effects include a hand/arm rash, which sounds OK to me, but there’s also neuropathy, something I’ve been experiencing lately. My fingers suddenly go numb and turn a waxy yellow color, especially when it’s cold. The doctors think it might be a circulation problem left over from the vein irritation of the ABVD.

And then there’s the vein damage. The other day, the term “like trying to get blood from a stone” occurred to me, as the nurses tried to get blood. I may as well be made of granite. They even got the veins, but they just wouldn’t give up any blood. And when things are injected now, it hurts more often than not. My veins are cranky, and the treatment is every week for three weeks, with one week off, over the course of three months. Even though this treatment is less toxic, I feel for the nurses and my veins, which have always been proclaimed “tiny” and are now staging a rebellion against being poked and punctured any more.

So I’m slated to get a port—something I’ve been avoiding. I still want to avoid it, in fact. I’m not sure why—most people say that there are no restrictions on exercise. I probably should have had one put in before my veins were so far gone, but I didn’t anticipate more treatment. And it’s not like I’m not used to having a weird bump near my neck; that’s how this whole thing started.

There’s the chance that after three months of treatment, I’ll have to do the ICE anyway. I don’t know why I feel pessimistic. The last treatment didn’t fully clear the cancer, but I’m in a study with my fellow unlucky refractory/relapsed peers. Can I be among the luckiest of the unlucky? Or be doubly unlucky?

Yet I’m going to take part in the study, hoping that I can avoid more time as a hospital patient than necessary.

I found out the results of the surgical biopsy last Friday evening. By the time I left the doctor’s office, it was after 7, and I was meeting my boyfriend at 9:30 in Chelsea to see a movie. I decided it wasn’t worth going back to Brooklyn just to turn around and come back to Manhattan, so I found myself walking from 64th Street to 23rd Street—a therapeutic, mini-tour of Manhattan that took me past Radio City Music Hall, Bryant Park and Herald Square.

It also took me past the Uniqlo flagship store, where I bought a tunic turtleneck, to cover up my still-healing mediastinoscopy wound for when I went into the office. You don’t realize how many turtlenecks you don’t own until you have a bloody bandage on your neck. The mediasinoscopy went well, though I felt it a little more than my first surgical biopsy. I didn’t even have the energy to assault any cabs that wouldn’t take me to Brooklyn right afterwards.

This time, however, I was aware of the weird feeling before the anesthesia. Whatever they give you before that makes you feel funny, then not remember anything. I still worry that I say the worst insults I know or exclaim horrible things during this not-remembering time. I have no idea why I would do this, but I worry anyway. Some of the last things I remember saying, as I pointlessly struggled to stay cognizant, were, “I feel funny again, like last time,” and, “Goodbye, everybody!” to the staff in the operating room before slipping off.

The weekend was a bit of a whirlwind, since the site I’ve been working on launched Tuesday. I worked all of Saturday afternoon and on Sunday, from late afternoon until midnight, so I feel as if I didn’t have time to process the news. But I would say this past summer’s time of unemployment was far worse. I don’t need time to dwell.

Unfortunately, it finally sunk in as I lay in bed on Sunday night. While my eyes felt strained and sleepy as I finished work for the day, they kept flying open as I struggled to fall asleep.

So the website launched on Tuesday, while I was launched into a series of appointments and tests. Since Hodgkin’s lymphoma doesn’t usually spread very rapidly, I could take some weeks before starting treatment again. But I’m staying here for Thanksgiving, and there’s no point in delaying the inevitable. I’ve had a little over month of near normal life again, and I don’t want to get used to it again, just to have it taken away.

I needed to take tests I took before I started treatment last time. On Tuesday, I had an echocardiogram, bloodwork and a PET/CT scan. During the echocardiogram, I had time to once again ponder hospital gowns. One of my friends who recently had surgery wondered why they had pockets. Someone suggested it’s for equipment and monitors, while someone else gave the explanation of hospital trinkets. I assume I will earn some trinkets during my three-week stay.

Before my PET scan, instead of the premixed red Gastrografin drink, the nurse mixed it himself—water, the dye and the red raspberry flavoring. So I finally had the opportunity to ask if red raspberry was the only flavor: It is. (One of my burning questions answered.)

I had a CT scan this time, too, like I did before starting treatment, so I had to get another injection. It stung a bit, and my legs automatically flew into the air and pedaled a few times, helplessly trying to flee, unaided by the rest of my body, which was strapped, hooked and wedged into place. It hurt only for a little bit, then the feeling I from the last CT scan kicked in. The nurses describe it as feeling as if you have to pee; it’s warm, like you’ve been drinking whiskey through your belly button.

I also had to have another bone marrow biopsy, which sounds much worse than it is. After I had my first one, I read a few cancer patients’ blogs that said they weren’t offered any numbing agents. I don’t know why anyone would do that, but if someone said they were going to poke around inside my bones without any lidocaine, I’d run away.

Oddly, the lidocaine is the worst part. The injection stings, and there’s another that’s a bit deeper that feels strange, but stings less. The actual collection just feels weird—a deep pressure, and a bit of a hollow feeling. They take it from your lower hip/back area, and it’s just a bit sore for a few days. The first time I had to have it done, my oncologist said she could do it right away, there in the office, adding that she likes to do it that way, so people don’t have time to think about it. I agree—thinking about it is much worse than the actual procedure.

After my barrage of tests, I had a day off (from tests at least) on Thursday, when I had sushi for lunch and oysters for dinner. My old dietary restrictions are back: No raw food out, no sushi or oysters, no cold cuts.

Friday, I saw the doctors and started treatment. The Brentuximab itself takes only half an hour, and there are supposed to be very few side effects. I was kept an extra hour to make sure I didn’t break out into a rash.

So that’s where I am. I started this post almost a week ago, and I haven’t had a chance to finish it—and then I kept having more to report. Thanks to all who have checked in and sent letters and notes of support!

I admit that when I returned home on Wednesday from my last round of tests, I had a good cry and threw myself a little pity party. This has been like seeing a light at the end of the tunnel, only to find out that it’s not a way out, but instead a shaft of light coming from far above, an unreachable place. So I have to choose another dark tunnel, knowing that there’s a light at the end, but I’ll have to scramble over some unknown, sometimes frightening, territory. Friends and family will offer bright spots along the way. Months from now (how many, I’m not sure), I’m slated to arrive at the end of this journey many others have taken. Temporarily worse for the wear, but finally free.

Comments

  1. Renn says:

    Dang, dang, dang it! I’m so sorry to hear that you are back for more chemo, dealing with painful tests, possibly get a port and basically staying in this crappy treatment phase a while longer. You deserve a break my dear!! I am encouraged by your taking part in a clinical trial! (YAY for small victories) I’m glad you’re busy with work but hope you are also able to get some quality sleep. This whole thing SUCKS. Thinking of you and sending you lots of healing thoughts…
    xo

  2. vector thorn says:

    hey josie, i wanted to say, first and foremost, that i am truly sorry about your illness, and hope that you keep fighting until it is beaten.

    i am currently working on a documentary regarding similar illnesses, and was hoping you would consider sharing it with others, if you think it is noteworthy, so that it may eventually find its way in the lap of some one who can contribute to the indiegogo campaign. if you decide to blog about it, let me know, and i will be happy to post a link to your site from our site, in the credits, to thank you for spreading the word.

    the site for the documentary is: http://ToxicBiology.com/

    i hope this helps you or some one you know in the future. thanks, and, good luck!

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