Ipilimumab, Dose 2

Today was a busy medical day for me, and went longer than I had anticipated.

My parents are in town, not only to lend a helping hand, but they wanted to be here for support though at least a part of my treatment. I’m very glad they came to visit and I’m appreciative of the help and support, but regardless of who they are, more people just makes the day feel longer.

We headed down to the hospital early because I wanted to get my labs knocked out quickly. Only two vials of blood this time, so that was quick and painless. We then ran downstairs to the radiology department for my daily radiation regimen. In addition to the treatment, I also had a few x-rays so they could evaluate the progress of the treatment. The extra minutes on the table left me a little stiff. Stiff, but not in pain. The nurses are dressing up as superheroes for Halloween, but said patient’s costumes are optional. Nice of them.

As much as I like the fact that the radiation has eliminated my pain, I’m feeling frustrated that I still can’t sleep in my bed. I know that’s the least of my problems, but I hate sleeping in the damned recliner. I had to do it after both surgeries (two weeks each time) and I’ve been back in for the last two weeks. And I still feel like I need another two weeks. Getting off the radiation table is awkward and uncomfortable, and that’s only with five to ten minutes lying flat. I can’t imagine lying flat for eight hours and being able to get up and function. Maybe I’m just afraid of the pain now. I don’t want pain, especially at the Ten-level.

But back to the day. After finishing radiation, we headed back upstairs for my second dose of ipilimumab. We went right back to the treatment pods and waited for my pharmacy to send up my cocktail. Which took about thirty minutes. Not a long wait, per se, but I was hoping for quicker. I guess they can’t actually order the drugs until you get up there. It makes sense because if I bailed or had another pain management crisis, the mixed drug would have been a wasted dose. I understand, but I also don’t want to be rational. I feel almost petulant about it, but I need to man up and get on with things. Anyhoo, the drugs came and flowed freely. And I sat in a 12×12 room with my parents for over two hours. By the end of the drip, I felt a little tired, but I chalk that up to the fact that I’m socially (and conversationally) weak and having to chat for two hours is a veritable trial for me.

After I finished my ipilimumab, I sat with my oncologist. She was very pleased by the improvement in my pain. We also spent a good amount of time talking about dosing and side effects and the efficacy of two v. three v. four doses and maintenance doses and scanning frequency. I had to reiterate in my own words what I need to remember about side effects and the need to lose pride for the sake of getting early treatment and more effective results.

It turns out that I’m tracking on the major side effects and I’m ready to make a call, regardless of how I’m feeling. Coincidentally, that’s how I had the non-medical stressors flying about the room. With the impending arrival of Hurricane Sandy, the National Guard all along the Eastern Seaboard are already looking at how to best support whatever the Governor needs to support. I missed a mandatory conference call with the Chief of Staff, so I start in the hole before I can even open my mouth. I dread these State Active Duty call ups because I think we can do better, rather than essentially shutting down “normal” mission accomplishment. I didn’t get yelled at, but I have a funny feeling I’m going to get more hands-on leadership for this storm cycle. I know I have about two or three hours on the computer tomorrow morning to prepare for the next conference call. And I’m mentally tired now.

So far, I’m not showing any side effects, which can be good news. Unless its bad news. Or no news. While its good I’m not feeling crappy, I’d kind of like to know something is working in my body to murder the melanoma cells.

Ah, well, I’m exhausted, but physically and mentally. I need to sleep, but I’m spun up on work and can’t drop off and go to sleep. At least there’s nothing I can do tonight. I need to sleep. Thank goodness I don’t have to go man a shift at the Joint Operations Center tomorrow morning!

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Back on the Right Path

And after a trying ten days, I now feel like I’m getting back to normal. Whatever that is.

I’ve got six radiation treatments under my belt now and I feel like a new man. I was talking to one of my Saintly Nurses (who volunteered to start my treatment immediately) this morning and I feel even better psychologically. I asked if there was some point where patients generally said they felt “normal.” she said some people do the entire course of treatment with little effect; some lucky people feel a benefit almost immediately. I was renewed by my first two treatments, and I feel better and stronger after each successive dose. In fact, I end up feeling worse by Sunday night, since I get no treatments over the weekend.

I’ve even cut down on my medication. While I still take everything they mandated, I didn’t need to take any supplemental Vicodin for pain today. If things continue, I’d like to see them cut my OxyContin by half. On one hand, I want to reduce meds because I don’t want to be reliant on pain killers, but, more importantly, I want to drive. Now, I am in no way, shape or form a Car Guy, but I despise having to ask others to give me a ride. I want to have my independence!

Right now, I’m down to having a constant, nagging ache under my shoulder blade on the left side. It’s almost like someone poking me with their finger all day long. Still no side effects from the ipilimumab, but most people don’t react to the first one.

Today’s radiation was a little different – I felt more pain than usual, but only for a little while. I think it was more my behavior than anything else: I stretched my arms farther out or shifted my weight too quickly. That’s my problem, I think. I know I’m feeling better, so I act like I’m feeling better. And I really need to pace myself.

I saw the Radiologist today and he was very pleased with my progress. He thought I was showing a little redness at the radiation site, so I’m doing a little bit of moisturizing lotion on my back. If that’s all it takes to keep moving forward, I’m good with that. It’s not like I’m not using moisturizers on my legs and scars on a daily basis anyway.

Taking Small Steps

This morning, my father-in-law drove me down for my next radiation treatment. I’m glad I’m doing the treatments now because they seem to work well. I knew radiation would kill the melanoma on my T7 vertebrae, but I didn’t believe when they told me I’d see almost immediate results. Well, on Friday afternoon I discovered what a 10 feels like on the pain scale. In my semi-learned opinion, bone pain is significantly worse than muscle pain. After two treatments (Friday evening and Saturday morning), I was down to a 1, with peak pain about a 2. Monday went back up to a 2-3, with peak pain around 4. And today was probably a 4. And then I got my radiation fix and I’m back down to a 2. My next appointment is for Thursday and, hopefully, I’ll have daily treatments for the next few weeks. I’d love to have a day with no pain.

The downside to killing the melanoma is now it’s harder to see if the ipilimumab is working. I still have a small spot on my T1 vertebrae, but it might be too small to get a good reading. Heck, I’m all for just having no additional spots show up!

I’d also like to get off all the additional medicines. Not that oxy and vicodin aren’t good, but I’d rather not have to use them. And I don’t like the fact that I need a spreadsheet to track all my mess, by dose, by time. Especially since ipilimumab has its own set of side effects, which can potentially add even more meds. I’m turning into an old man with a pill case! And I need a cool, new watch with multiple alarms so I know when to dose myself. Or it would be cheaper and less annoying if my melanoma just went away with no fuss.

I’m really not enjoying sitting at home all day. I want to get back to work because I feel like my brain is atrophying as I sit here. There’s only so much time I can sit here reading different news sites or looking at Facebook.

Home, Sweet Home

While the nurses and doctors are wonderful people and I have had nothing but positive interactions, I’m glad I’m home instead of there. I’m running a regular pharmacy on my dining room table: a muscle relaxer, really good pain killers, a steroid, an antacid, a stool softener and, in case the latter works too well, I have imodium, too.

I was skeptical about the amount of relief I would get with the radiation treatments, but I can happily admit I was wrong. With only two treatments, my consistent pain is down to a 1 or 2, and my peak pain is maybe a 4. Sure, that’s in conjunction with oxy and vicodin and cyclobenzaprine, but I’m now tremendously more optimistic. For the first time in a month, I slept through the entire night – 11:30 to 8:00! I was stiff and achy when I got up, but I was able to get up. I don’t plan on trying to sleep in a bed again until I finish another week of radiation, though.

I did not go to my oldest son’s football game today, nor will I go to their lacrosse tournament tomorrow. I’m disappointed and being home alone will be very lonely, but I’d rather miss a few things and get better than re-injure myself and miss even more.

I start more radiation Tuesday and have my next ipilimumab scheduled for the end of the month, so I’m doing pretty good. It’s always good to end the week on a high note!

Never A Dull Moment

Yesterday morning, I got the kids off to school and headed down to the hospital for my first dose of ipilimumab, as I start my Stage IV treatment journey. My wife caught the early train back from NYC, got off in Providence and met me there. First, we met with one of the clinical social workers who specializes in oncology and talked about (1) how I was handling things, (2) how my wife was handling things and, most importantly, (3) how we explain everything to the boys. She thought we were doing well on all three counts and gave us some other reading materials and some online resources for each of us. I’m glad we talked to her.

My attitude is both good and possibly bad. I told her I don’t feel anything about my melanoma; I’m not sad or angry or disappointed or anything else. I can’t tell if I’ve accepted it, or if I’m in denial. On some level, it’s bothering me that it’s not bothering me. We talked about the care giver stress, balancing job and kids and home and job and me and job and laundry, etc. She gave us some resources to look at, both for us and the kids. She said we’re doing well with the kids and we are doing a good job keeping the communications open. We need to talk to their teachers and the school nurses to ensure the boys get support (if needed) at school, too.

After that, the doctor came in and sat with us to review the treatment plan and talk about my ongoing back pain. Based on conversations with the Radiology Oncologist and my doctor, we chose to do radiation concurrently with the ipilimumab to alleviate the pain. Turns out doing both simultaneously looks to have a higher rate of success. Who knew?

The ipi treatment was just like the interferon – I got a little saline solution, they brought down my outrageously expensive dose (I was looking for the gold flakes รก la Goldschlager, but there was nothing) and hooked it up and then I chatted with my wife for about two hours. I must admit I’m a big fan of not having immediate side effects. Going through fever and chills was never fun.

I got a late start on my ipi, so we were getting calls from Radiology asking when I’d be down for the prep work. When I got down there, we talked to the doctors and I went in to get prepped. Prepping consisted of me climbing on a hard, cold table so they could align me to the machine and tattoo me with reference points to ensure I got put in the exact same position every time. Tattoo Number One was on my spine and OMFG did it hurt! Fortunately, she got it marked sufficiently so I didn’t need another stick. The other two tattoos are on either side, I imagine like a big triangle – I haven’t seen them yet for reasons to be explained. So when they had me marked up and complete, I went to get off the table and inadvertently found out what Level 10 pain is. I think the poor radiologists were taken aback by the level of pain.

I was scheduled to come back next Thursday for my first treatment, but the ladies felt so bad about my pain they coordinated to get me my first two treatments last night and this morning. Oh, and my oncologist decided I should remain overnight to allow them to help get my pain under control. I checked in, got some morphine and did my first radiology at 8:00 pm. Once I got back to the room, I kicked my wife out so she could get some sleep. I slept off and on, probably about four hours total, until they came in at 4:30 to take me down for my second radiology treatment. At 5:00 am.

Part of my failure to sleep was pain. I tried to get up to put on the pajama pants and dressing gown, but my back wouldn’t cooperate. I decided to sleep in my clothes, in the recliner. Oh, and I have a roommate, too. He’s an elderly gentleman who keeps setting off his bed alarm when he tries to get up. I feel bad because I’m not too sure he knows where he is, or why he’s here. I really hope someone comes to visit him today. To be alone and not have all your wits about you seems worse than cancer.

So, anyhow, the treatments went well. I’m not sure when I get to leave. At least my wife will show up in a half hour with coffee and a blueberry muffin. And my iPad charger (18% battery as I type). I have a lovely, sunny view of an internal courtyard. Nice high clouds, looks like a good breeze in the trees – a lovely day to spend in Rhode Island Hospital.

My next radiation treatment is Tuesday morning and my next ipi treatment is in three weeks. So far, so good!