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.

Random Thoughts (Quite Long)

Lately, I’ve had a whole bunch of stuff running through my mind and it’s been maddening, to say the least. None of the thoughts are all that deep or disturbing, but when they pop into your head at midnight, they tend to be, well, distracting. I’ve long considered myself a pessimist (I hope never to be disappointed by whatever happens) and a realist, but I’m not sure anymore.

Some of the things which are pushing my buttons, in no particular order:

1. Pediatric cancer
2. The Massachusetts electorate
3. Catholic Mass
4. Closed mindedness
5. The hollowness of Veteran’s Day and Memorial Day
6. The Army Values and morality

This list is not all-inclusive and will certainly be amended, corrected, deleted, struck through and/or forsaken sooner or later. Heck, I may not even end up ranting about all of this stuff before I post. In fact, I’m sure this is just the first of several rankings and ravings.

I will say all views are my own, individual views and do not represent the views of any organization, branch of government, the Department of Defense, the National Guard, or any person, living or dead. Who isn’t me, that is. This is merely my rant. My screed. My venting bile.

Since we are currently celebrating Veteran’s Day, I should most relevantly start here. I have to admit, I have been torn for a number of years by the whole “thank you for your service” thing. I understand there is a societal fetishization of certain career choices: the military, the police and fire fighters, for instance, are brave protectors and are admired for doing things many believe are beyond the capabilities of ‘normal’ people. But I think we as a society have gone so ridiculously overboard about the military that we’ve almost progressed to a cartoonish understanding of reality. You see, we can talk out of both sides of our mouths and praise cops and firefighters on one hand and then tell tales of dirty cops or firefighters shamming the system (i.e., out on worker’s compensation for a bad back, but competing in national bodybuilding contests), but no one can speak ill of the military. The only people I ever hear disparage the military are those of us in the job!

But that’s only part of the problem. I can’t begin to count the number of times I hear ‘Thank you for your service’ coupled with the almost instantaneous follow-up ‘I hope my children never end up in the military.’ So it’s OK for someone else’s children to sacrifice a few freedoms, a few/many relationships, possibly some mental health, definitely some physical health, live the full range of human emotions (raw terror to sheer boredom) sometimes daily, get little (albeit acceptable) short-term compensation for a long-term benefit (yes, our retirement package is pretty good – if you make it long enough to collect), etc. I don’t doubt there is a sincere sentiment held by people that we do things they don’t want to, but I almost always feel its bumper sticker deep. Wave a flag, wear a yellow ribbon, put a bumper sticker on your car, thank a service member, sing God Bless America at baseball games or in church. Check. Check. Check. Check. Check. See, we support the military.

In my cynical opinion, over the past decade we have just repeated what we do every time we have a war: lower the entrance standards in order in increase the military’s end strength. Let’s face it, to support two major wars for a decade is, to say the least, manpower intensive. We need people to go and do very dangerous jobs. Toss in a weak economy with few entry-level alternatives for those who do poorly at standardized testing, didn’t work hard enough to get into college, or have problems with authority or look down their noses at manual labor. We used these people hard, fighting in inhospitable climates, crossing poorly understood cultural boundaries daily, neglecting to provide any training on the psychological impact of killing and death (for a generation who is seeing more and more grandparents living into their 90s, no urban epidemics, low infant mortality, and the only violence is tv or movies or video games I believe this generation is the LEAST prepared for the horrors of war), accepting a lower general level of fitness coupled with 50lbs of gear (on the light end – that’s about what I carried as a Staff Guy who didn’t have to climb mountains or engage in direct combat), more heavily relying on the Guard and Reserves (who average a good ten years older than the Active Component). Now we have a high number of service members who are having trouble understanding (or at least expressing) the bad things they saw or did. Toss in all the bio-mechanical injuries, like compressed or ruptured or herniated discs, degenerative disease, the traumatic brain injuries, the large-scale wounds (seems like there have been significantly more service members losing digits or extremities or limbs in the Long War than in previous wars) and you’ve got more service members on more pain killers, leading to increased chemical dependency.

Now couple that with the much-discussed impending drawdown: who will the military look to reduce first? Answer: the medically unfit (physically or emotionally), the substance abusers (whether overly prescribed or looking to numb other pain), the poorly educated (who are also significantly less likely to use their GI Bill benefits), the nonconformists (who will struggle with the newly enhanced haircuts and uniform standards and all the other ‘fun’ things that come with a garrison-based lifestyle, i.e., more formations and inspections and parades and work details (like mowing the grass on the rifle ranges or ‘area beautification’) and bans on visible tattoos, etc.). These are the same people who will continue to struggle to find jobs in the civilian world, too. And people wonder why veteran’s unemployment is higher than for civilians. Oh, and employers fear those who stay in will get deployed again (needing backfill, benefits while gone, holding the job (or similar) until they return. Or fear that they’ll go all Rambo and start shooting people in the office. Because that happens so much. No, we should be prepared for the next generation of homeless vets. The military is doing a significantly better job this time around with developing transition services and resources, but I’m not sure those who need the help are actually seeking it out.

I almost long for the days where you just ignored us. We chose the military as a job; some of us have chosen it at a career. No one forced us. Why don’t you gush thanks and praise on sanitation workers? You don’t want their job, and they probably have a greater influence on your daily life and health than we in the military do. Bubonic plague in your neighborhood? No? Thank a sanitation worker.

So there’s Rant Number One. I can honestly say I feel better for raging into the wind, even though I know nothing has changed. I’m feeling kind of Zen about it.

Having a Hero

So for the past week, every day I go to my radiation treatment I’ve seen a little boy coming out of his treatment. Today, I spent a few minutes talking to his mom, as she was waiting to end and I was waiting to start.

He’s four. He has a very aggressive cancer. He’s had an eight-inch tumor removed from his leg. He’s doing radiation and chemotherapy. He’s aware of his blood counts. He still has active cells on his margins. His treatments seem to be working well right now. He had at least four different appointments today for different tests and treatments.

No kid should ever have to know about cancer. No kid should ever feel that much pain and suffering. And I wish I was half as strong as he is.

He’s brave and strong and positive. And he’s in my head constantly. He’s my hero.

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.

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!