Where I Visit the Hospital (Again)

The pity party is over and we’re back to business as usual on the cancer front – we will continue to look for new solutions and will not give up the fight. I don’t intend to die any time soon.

While visiting my oncologist for our weekly checkup, we talked more about pain management. I have recently been increasing my dosages of intermittent pain meds because the breakthrough pain has been increasing steadily. This, evidently, is a result of my new vertebral cancer spots. I got some new IV meds, which took away the pain very well, which they then recalculated into pill format. New breakthrough meds were all set and I went home. The new stuff worked at 7pm and at 1am.

Then I woke up uncomfortable at about 3:30, which progressed to pain by 4. My next dose of breakthrough meds wasn’t scheduled until 7, so I was concerned. I tried a hot shower and heating pads, different chairs, nothing worked. Finally, I broke down and took more meds an hour early at 5:00. By 5:30, they should have kicked in. Should have. So at 7:30, we ditched the youngest at a neighbor and headed down to the hospital. I called my oncologist on her mobile and told her the situation and she said she’d meet me at the cancer center ASAP. When I arrived, I got a chair and an IV and we started the Pain Management Process. Eventually, I checked into the hospital for another overnight stay.

On the plus side, my pain is down to nothing. On the minus side, I don’t know which of the drugs is working or when I’ll be leaving. I kind of need to know because I have an MRI scheduled for this evening. And I need to reschedule a second opinion with Dana Farber, which I missed yesterday.

At least things are moving forward, which is a Good Thing. The Next Steps: keeping the pain down to zero, getting back to work (aka Normalcy), choosing my next treatment, oh, and killing my cancer.

Bad News Seems to Follow Me Around

And here I was thinking things were going well: I did my fourth dose of ipilimumab, my second dose of Zometa and I had an appointment to deal with my back pain. I had a spinal MRI on Monday morning, with a call back for a consult for a vertebroplasty of my T7. On Tuesday, I had another PET scan. On Wednesday, I went in for a vertebroplasty – basically, they injected lucite into my fractured vertebra to stop the pain. Thursday was a nice day to sleep and recover from a crazy week. Then came Friday.

When your oncologist asks if any of the other doctors who’ve seen you over the week has said anything about your MRI or PET scan, you know it’s a bad day. Evidently, during my ten weeks of treatment, my cancer spread like wildfire up and down my spine. Ipilimumab didn’t have any effect on my cancer.

So where am I now? I believe my life is now measured in months (no one has said how many, but there are no more approved treatments). I’m trying to get into an NIH study and I’m getting more radiation to alleviate the back pain. I’m maintaining my positive attitude until the bitter end, which I hope will be 40 years from now. We won’t tell the kids until after Christmas; no sense in ruining a last, happy memory.

Right now, all I want to do is crawl in a hole and cry. But I won’t. I can’t. The past two days have truly sucked, but I’ll be better by Monday. Then I can go back to having hopes and dreams.

I Hate Side Effects

I knew it was going to happen eventually. I knew each minor ache could be the Big One which would throw my treatment into turmoil. Would it be the headaches? The stiff, achy neck? Would I start having vision problems? Or would I get waylaid by the dreaded gastrointestinal problems?

We went on a local trip for Thanksgiving, to my wife’s brother’s house up in NH and had an absolutely grand time. The Bhoys loved playing constant basketball with their cousins, and who doesn’t love watching a million college football games?

The best thing is I didn’t ruin Thanksgiving!

The worst thing is I got the gastrointestinal troubles. I got up at 3:30am and had my first episode. I went back to sleep, feeling fine. I was hoping it was an anomaly. And then I got up again at 6:30am and took my first dose of Immodium. As an aside, I’m not a big fan of the mint flavor. And I knew I was going to have to call the doctor. Then at 9:30am, I had a third episode and a second dose of Immodium. At this point, I started worrying about getting home. After all, we had a 2.5 hour drive ahead of us. Well, the Immodium worked and we got home with no issues.

I called the Doctor from the road and the oncologist on call basically told me if I had any more episodes, I should come in to the ER. Not really helpful. So I’ve had dehydration headaches, possibly lack of caffeine headaches, hunger pangs (because toast and applesauce, while delicious, are not filling) and a low grade fever. Fortunately, I have had nothing worse happen today. I hope nothing happens tomorrow. And I think I’m heading in Monday morning. I hate feeling like this, especially because it inconveniences everyone else around me, especially my wife.

I guess the “good news” is that my body is saturated with ipilimumab and I’ve reached an appropriate level of toxicity. Hopefully, this means I’ll see some positive results now. I’d love to be the 1% who gets long-term, durable benefits. I’d settle for knowing I’ll get to see my youngest graduate from high school in eight years. And not be sick anymore.

Ipilimumab, Number 3

So last Friday I went in for a tediously long day of appointments and treatment. I started with a routine follow-up with my oncologist. She’s really focused on watching me for any signs of toxicity and we carefully review everything every week. I had a slight headache, but we chalked it up to minor dehydration. My achy neck and shoulders are a side effect from my bone regeneration treatment (my bad: I still don’t know what the heck the medicine is called, but I get an infusion every four weeks, for a total of nine infusions). No red eyes. No gastrointestinal distress. Still the same rash with no itchiness. I thought I was going to get a stern lecture because I forgot to take my meds one day, but I guess the pain I felt was sufficient punishment.

A little aside: my office just moved to a different town, changing my commute from 24 minutes door-to-door to somewhere between one to two hours door-to-door. And if I leave the house after 5:30, the commute is closer to the two hour mark. Well, in my rush to get out the door, I forgot my meds. Since I’ve been weaning off the meds, I thought things might not be so bad, and I was right for most of the day. I felt pretty achy and uncomfortable, but there was no pain. Until about 4:00. And there was the pain! While I was in the middle of the 90 minute trip home. Starting at the top: headache, stiff neck so looking to change lanes was torture, back pain, bone pain – I had it all! As soon as I got home, I took my next scheduled dose of meds, as well as short-term pain meds. Evidently, I did the right thing. Still, it took about three days to fully recover from my little oversight.

Emotionally, I consider it a major setback because I thought I was doing so well and the pain was virtually gone. Well, without the muscle relaxant and OxyContin, there’s still a pretty decent amount of residual pain. How long will I need to mitigate pain with drugs? I just want to feel normal, whatever that means.

So back to the appointments. One of the things we talked about was the need to get me into physical therapy. Essentially, I’ve done no physical activity for over a year and my biggest concern is I try to do too much too soon and end up doing significant damage to myself. I want to meet with a professional who can get me on the right path to recovery. I just need a voice of reason to prevent me from deciding to toss another 50 pounds on the bench press because I know what I’m doing.

After we finished, I headed in for my infusion. I love my nurse, but she’s not really doing well with my veins. I don’t like her sticking skills at all. A couple pushes and pulls and I’m truly surprised I don’t have a bruise yet. My lovely wife left in the middle of the infusion because she had to get to a parent-teacher conference. This was my third dose of ipilimumab, so I’m expecting to see side effects soon. I don’t want side effects, but evidently having side effects is a sign the medicine has saturated my system and is doing something. Otherwise, the infusion was relatively quick and boring.

Then, for my final trick, I had a follow-up with my radiation oncologist. He’s happy with my progress and is pleased with how much better I feel. Quick and easy!

The next steps for me are my fourth and final ipilimumab dose, my second bone strengthener dose, another brain and spine MRI (a joyous two and a half hours in the tube), another PET scan and more bone strengthener, oh, and physical therapy.

IIt’s all good.

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!

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.

Because Knowing is Half the Battle

This afternoon, my wife and I went to our teaching session for Ipiliumumab down at Rhode Island Hospital.

Oh, yeah, we decided we would move ahead with the Ipiliumumab right now and keep the spot radiation on hold for now. Given that I’ve “only got a little cancer,” there’s no point in killing the cancer right now. After all, without a tumor, there’s no way to see if the medicine is working. And if the Ipiliumumab doesn’t work, we can always do the spot radiation.

So we went down to the hospital and met with one of the nurses and got even more information. We didn’t get one of our favorite nurses because she left early not feeling well. I’m very satisfied with the other nurses, but there are two who have been especially amazing. It makes me feel much better that one of the two will be administering my drugs. I also got a handy wallet card that I need to have with me at all times, should I have serious side effects.

So, basically, my timeline is four doses of Ipiliumumab over the course of ten weeks. I then do a whole bunch of PET scans to watch the tumors. They might get bigger, or smaller, or not change, or get bigger then smaller, or get smaller then bigger, or any other combination of bigger, smaller and no change. If I can tolerate the four doses, there’s a reasonable chance the drug will do something good for me.

As usual, there’s a catch. I could get a rash or have liver failure or nerve damage to the point of paralysis or colitis or massive glandular problems or eye problems. Or I could die. But it’s not all that likely. There’s nothing quite as exhilarating as reading medical documentation!

At some point I think I should have some sort of emotional response. I’m starting to get upset that I’m not upset. Hell, it’s more troublesome than the cancer. Maybe because I’ve been so good at only focusing on the next step and I can’t see the bigger picture. Maybe I do need to join a support group or talk to a counsellor after all.

Moving in the Right Direction

I’m getting a little frustrated by the fact that the only constant in my life is inconsistency. When last I commented, I was coming off a double leg infection, which led to more swelling in my lymphedemous (?) leg. Well, the antibiotics and topical steroid cleared things up and I got two weeks of as close to normal as I’ll get. Things were going well and life was reasonably normal.

And then I got a resurgence of both infections. So i had to stop wrapping my leg for a week while I got things evaluated. I got in to the dermatologist, who did biopsies of both sites, put me back on antibiotics and said I should start wrapping my leg again. She said the topical steroid would work better if the leg was wrapped. After a week of wrapping, my leg shrunk enough that I could get back into the compression stocking, which is a plus.

So here’s where I stand: I am using my compression stocking, my double infections seem to have cleared up, I should get the biopsy results this coming week, my interferon shots are progressing (though stabbing myself is not getting any easier), and I think I can start doing some kind of exercise. It seems like things are back on the recovery track, but I don’t have confidence they will continue this well.

I don’t think I’m depressed or anything, but I can’t say I’m feeling positive about my situation. There’s no way of knowing whether or not I’ll have any resurgence of melanoma. There’s no cure for my lymphedema. I have to stab myself three times a week until December. This has affected my job and my family, neither in a good way. Still, other people have it much worse. How can I feel upset about my situation when I see little kids with cancer? Or people needing blood transfusions while getting chemotherapy? Still, it’s hard to have a positive attitude, or recover from a bout of negative attitude. Hopefully, starting to exercise will help.

Two Steps Forward, One Step Back

My infections cleared up enough that the doctor and the various nurses all agreed I could move forward with my treatments. I had a brief (but effective) teaching session on how to mix my interferon, then the nurse made me do my first shot. I now understand why nurses jab in the needles – slow equals pain! Things seemed to go pretty well, though. My new dose is about half of what I was receiving via intravenous, so I assumed the side effects would most likely be half as bad.

I was wrong. About three hours later, I started getting the chills, so I took my Motrin. It helped, but I suffered chills for about a half hour. Not too bad, I thought. Still some side effects, but it’s manageable. Then, about seven, I started getting chills again. I have never had chills twice in so short a time. The only other time I got double chills was about seven hours between bouts (early IV and early Motrin), but only four hours later? Did the Motrin not work or something? I took some Tylenol and tried to eat (not too hungry and not enough energy to eat) and went to bed early. I was kind of hoping to get decent sleep to make everything feel better.

Again, I was wrong. I tossed and turned all night. I felt chilly, then I ran a bit of a fever, then I was freezing again. Throughout the entire night, I had a low-grade headache. Probably much of this was related to dehydration; I know I didn’t drink enough water yesterday.

Then this morning, I got up and my stomach was grumbling from a lack of food. My wife ran out to Dunkin for the boys (we had three 12 year olds sleeping over, or NOT sleeping, at least until three-ish) and got me a coffee and a blueberry muffin. Everything was good until about eleven, then I had HUGE stomach pain, like a giant gas bubble. I was almost crying from the pain. Maybe it was constipation because I did have bowel movements and I feel much better now. Being sick is ridiculously gross. My wife wants me to call the hospital, but I think I should wait until we see if I have a relapse. If not, I can mention it when I go in on Monday.

Now I’m dreading the self-injections because if I’m going to feel this bad after each shot, I’ve got eleven months of miserableness to go. Hopefully, things will get better with subsequent shots and I’ll have a better world view.

On the plus side, my infections are all clearing up. I’ve finished my antibiotics and I’m still using the topical steroid. The big infection is down to just being a red blotch and the smaller infections are virtually gone.