PET scan results in: Still Not Dead. Kill it With FIRE

Saw my radiologist at Emory with the results of last week’s PET scan.

It wasn’t clean. There are still active cancer cells in the tumor location in my nasopharynx/sinuses.

I was really trying hard not to dwell on these results. After the last PET  scan, I didn’t want to pin my hopes on a clean scan, but even with me actively working not to think about it and telling myself that it was unlikely the two rounds of R-ICE chemo would have put me in complete remission, it was still a blow, hearing it.

I did get to see the PET scan this time, as well as the initial scan we did last November and the one we did in March. The good news is that the active cancer area is much smaller compared to both, but then again, if it weren’t, we’d be in much worse shape moving forward. It was kind of astounding seeing the scan from November, how huge the tumor was, how much of my skull it occupied.

These results don’t change our next steps, which is to irradiate the whole tumor area and Kill it With FIRE. It does, however, mean that the radiation course is going to be a little more aggressive, possibly take five or six weeks instead of four, expose me to more radiation all told–which, in a not-funny correspondence, will increase my chances of getting another cancer, leukemia, some years down the road as well as increase the potential side effects. There’s also a chance that whatever is making these stubborn cancer cells not succumb to the chemo will also make them resistant to the radiation, and I won’t go into the stem cell transplant in complete remission. My odds, of course, are much better going into the transplant in complete remission versus partial.

Tomorrow I go in for a CT scan and mask fitting for my radiation treatments. We’re aiming to start radiation next week. 

I’m so tired of being sick. Fuck cancer.

Tweets for the Week of 05-19-2014

Tweets for the Week of 05-12-2014

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More Trifusion Catheter Fun (or “How ‘n heck do I shower with this thing??”) and Neupogen Self-injections

Went to work today, hurray!

And had my first shower this morning after having my trifusion catheter installed. That…didn’t go so well. The nurse from the hospital supplied us with a packet of these plastic adhesive shower shields to stick over the dressing so it wouldn’t get wet. She told us to use two of them overlapping and to try to keep the area from direct spray.

Two. Overlapping. Avoid direct spray. Check.

Problem is, where the catheter is installed–in my upper chest–it’s all bends and curves. I plastered the plastic shield thing firmly around the dressing, but it gaped and let water in almost immediately, every time I shifted my right arm. Had to truncate my shower and have Matthew help me do an emergency sterilizing and re-dressing of the catheter.

How the hell am I going to be able to shower and keep the catheter’s dressing dry?? Gah!

Tomorrow we begin the fun, fun adventure of daily self-injections of Neupogen. Neupogen will increase my white cell counts but more importantly, it will stimulate stem cell production–which is vital because I’m slated to have them harvested next week for my transplant.

Matthew and I both received training on how to stick me. We’ll see how that goes. I’m betting I’ll be better at injecting me than he will.

Tweets for the Week of 04-28-2014

In the Hospital for Round 2 of R-ICE Chemo

Back in the hospital for round 2 of this cycle of R-ICE chemotherapy. Had to have a blood transfusion: two units of O+. I expected to have another allergic reaction, as I have for both platelet transfusions I’ve received so far, but the pre-transfusion meds of Benadryl, Tylenol, and hydrocortisone seem to be doing the trick. No allergic reaction. *crosses fingers*

Huge thank yous and big virtual hug to everyone who’s asked if they could directly donate blood to me. I’m O+, which means I can only receive O+ or O- blood products, but more than that, I’m a transplant patient with a really messed up immune system. There’s extra persnickety screening and matching requirements for anything I receive, making it terribly unlikely I’ll be able to use folks’ directly donated blood products, plus everything I receive needs to be irradiated, which is done off-site.

So between the time constraints and the persnicketyness of my blood product requirements, I can’t really accept offers of direct blood donations. However, I really do encourage everyone to donate to the general pool if you can. It’s because of awesome folks like you that I can get all the various blood transfusions I’m having to receive. *HUGE hugs*

Trifusion Catheter: Twilight Anesthesia Weirdness, “Ow,” and Some Practical Considerations

Instead of a port, my oncologist decided to install a trifusion catheter in my chest. In addition to being a long-term catheter which can be used to draw blood and administer IV fluids and chemotherapy meds, it can also be used to harvest stem cells for my transplant procedure. It’s got three lumens (external tubing lines) of a couple inches in length which extend from the single catheter tube–which is a three-in-one configuration–tunneled under my skin.

The installation procedure yesterday was a minor in-patient surgery that took about 20 minutes in the operating room. (The prep and post took significantly longer, of course.) They gave me local anesthesia as well as twilight for it.

I’ve been twilighted once before, but it essentially knocked me out that time, and I don’t remember anything about that particular procedure. I do remember waking up and asking the time and being perplexed as to why Matthew found this so amusing. Apparently, I’d come around several times before, asked the time, and fallen back asleep–without remembering any of the previous wake-ups. I did, however, have complete awareness of having been rendered unconscious.

For the trifusion catheter installation, I remember the nurse telling me they were starting the anesthesia, staring at the IV tree, hearing the doctor saying he was injecting the local, feeling the needle prick and the burn of the lidocaine, staring at the IV tree, and then the doctor saying they were all done. Thing is, I don’t remember falling asleep at all. I even thought to myself, as they moved me to the recovery room, “Dang, I was awake the whole time. I was hoping the twilight was going to knock me out like last time so I could get some sleep…”

It only occurred to me on the drive home that I couldn’t recall huge chunks of the procedure–like when the doctor inserted the catheter, when they applied the dressing over it, and when they removed the sterile sheeting. But I could swear I never lost consciousness at any time.

Twilight anesthesia is weird.

Unsurprisingly, the catheter site aches. It’s on the right side of my chest, which makes it a somewhat ginger proposition to use my right arm. Getting dressed, ow. Reaching to close the car door, ow. Shoulder seat belt, ow. They say the pain is supposed to go away in a day or two.

On an awkward/amusing note, before the surgery, I asked the doctor whether I could still wear a bra with the catheter, and he assured me that the line didn’t go into the breast, so it wasn’t a problem. I don’t think he grasped the concept of “bra strap,” as while the installation site is under my collarbone, nowhere near my breast, the dressing and site of entry are exactly where a normal bra strap needs to go. I had to switch to a one-arm/off-the-shoulder bra configuration this morning. (Matthew has since informed me that most men, including himself, find the operation of a bra a mystery, and chances are the doctor indeed did not understand the complex and baffling mechanics of your basic bra strap. o.O )

I’m also finding my wardrobe options to be a bit vexing, as I’ve never shopped for shirts, sweaters, or dresses with the consideration of: “How cute will this be with three lines of tubing sticking out of my chest?”

Pre-Stem Cell Transplant Procedures, Anxiety, and Dread

This week, I managed to make it into work for one full day and one half day (probably). I’ve had an echo cardiogram, EKG, pulmonary function test, multiple labs, and a tri-fusion catheter inserted. I’ve also met with my transfusion coordinator, social worker, radiologist, and oncologist, submitted FMLA forms, and updated my co-workers on my preliminary out-of-office schedule. And I go into the hospital tomorrow to start my next round of R-ICE chemotherapy.

On the one hand, I’m really glad things are moving so quickly, since this cancer continues to be astonishingly aggressive. On the other, I am overwhelmed. And scared. And exhausted.

The best days were the ones when I could go into work. Being able to focus on something other than being sick and the treatment path I’m having to undergo is both rejuvenating and refreshing. Any time I can spend at the day job is beginning to feel like a luxury day at the spa.

Meeting with my transplant team, I got a better idea of the magnitude of the stem cell transplant procedure. I’ve been operating under the assumption that once I completed my three-week stint at the hospital, that was it; I could go back to work, resume life as usual, start running full tilt towards a resumption of normalcy.

I was so wrong.

I knew that the procedure will involve a total destruction of my immune system, utterly wiping out my bone marrow. I didn’t realize that it would also destroy my childhood immunizations. I’ll need to get re-vaccinated for everything in something like one-and-a-half to two years from now. And during this time, I’ll be at risk of contracting chicken pox/shingles, measles, and all the other lovely diseases one thinks are safely behind you as an adult.

Also, the weeks in the hospital for the transplant itself are only the beginning. With my immune system wiped out, even with the stem cell transplant coming to the rescue, I will be weak and unable to be around people and potential infections for upwards of months. They won’t let me return to work until my immune system stabilizes, and that is going to exhaust my remaining leave time as well as the three months of unpaid FMLA time I’m allowed. Even after I’m allowed to return to work, I will continue to have a terribly weakened immune system, suffer from fatigue, and all the horrible side effects of what will essentially be a lethal dose of chemotherapy, for upwards of a year.

So much for a speedy return to normalcy.

My transplant coordinator recommended that I try to take things one step at a time, but it’s hard not to stare at the big picture and gibber with anxiety and dread.

Tweets for the Week of 04-21-2014