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!

A Pain in the…

Ever since I had my biopsy, I’ve been having back pain and I’m not sure why.

It could be that when they did the biopsy, they scraped something or poked something on the way in or out. Or it could be the “small amount of melanoma” on my T7 is suddenly causing me pain. Or is it psychosomatic because I didn’t have any pain until I found out that i would eventually have pain.

So far, the doctors don’t know why. Nothing showing on my last PET scan, nothing on my spinal MRI, nothing on my ultrasound (ordered because they thought it might be a fluid buildup or a haematoma). It’s all in my soft tissue, so I don’t think it would be melanoma-related (not on my spine, no bone pain). It feels like I’ve got a giant, painful knot under my shoulder blade. I’m calling them again tomorrow morning since I’m getting tired of the pain. I’m tired of taking Motrin and Vicodin. I’m tired of being so limited at home.

Hell, we need to clean out the garage so we can get the cars in before the New England blizzards. And the air conditioners won’t move themselves out of the windows. I think I’m doing better by the evening, but then I’m back to square one when I try to get out of bed in the morning. I don’t want to do the radiation treatment because then we’ll have no way to know if the drugs are working.

It’s damned annoying. I’m truly glad I don’t have debilitating symptoms – I’ve seen others who are less fortunate and I marvel at their strength. I don’t think I have that strength. I’m bitching and whining about aches and pains. And I’m not even on medication yet! What happens when I’m on Ipilimumab?

I feel bad about being so negative, but I feel like I need to be a pillar of strength for my wife and kids all the time. I know I need to vent. I feel bad I don’t vent to my wife, but she doesn’t need the burden. It was easier to talk when I was only in stage 3, but the “promotion” to stage 4 is, well, disconcerting. I suppose I need to come to grips eventually, but I don’t intend to give up. I hope to bitch and whine for quite a number of years to come.

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.

Faded Memories

What do you do when you lose your Happy Place?

For the longest time, my happy place was a spot in the Giardino di Boboli where I could see the city of Florence spread before me. A bright blue sky with a few puffy clouds; the warmth of a Springtime sun; the birds in the trees, the children playing in the garden, the faint traffic. Thinking back to that spot has always been a source of comfort when I’m stressed, even though I haven’t been there in over twenty-five years.

But recently I noticed its not really a Happy Place anymore – all I have is a postcard. I can still see the scene, but I’ve lost the other senses. On one hand, how can I be upset about life going on? I’ve seen more and experienced more in the last two decades than I ever did in the first two decades. I married an amazing woman. I saw my two wonderful boys born. I saw us buy two houses for our growing family. I visited historical sites and learned about different cultures. All of those events were a whirlwind of activity, though. Looking back, I can’t say I had the time to revel in any of those moments. In fact, they all seem like a giant blur of adulthood.

On the other hand, when you’re really troubled, it would be nice to have an internal source of comfort. It’s great to have family and friends who care, but they are not always around. Let’s face it: the only person who is ALWAYS with you is you. The first line of psychological defense is you. Some of us do not find solace in religion, so where do we turn? It’s not that I don’t have faith; it’s just not a source of comfort. My comfort was always having Firenze. Rick told Ilsa they lost Paris until she came to Casablanca, but I don’t have a Casablanca to go to.

I would love to take my wife and kids to see Florence. I’d love for them to fall in love with the art and architecture and the food and the sense of community and the language. I’d love for them to get lost in the museums and gardens and side streets. But it won’t happen. Too much to do. Too busy at work. They’re signed up for sports. We’re supposed to visit someone. There are a million excuses, all irrelevant and all valid.

How come there are all those people who you hear about who quit their day jobs and live their dreams? How do they have the guts to do it? What happens if they can’t make it work? How many succeed and how many fail? When you’re health goes downhill you come up with loads of ideas on what you SHOULD have been doing for all these years. But then you’ve got to balance it with treatments and normalcy for those around you. As much as I’d like to spend two years traveling the world with my family, providing my boys with a reality-based, worldly education, would that be fair to them? Spending a fortune, my wife being set back in her career, leaving them to pick up the pieces and start a new life, just for the opportunity to go out on a high note. And then there’s the fact that I don’t think I’m going to die any time soon. So we do all that and then I have to come back and find something to do – the Army doesn’t give you two years off because you need a mental break.

Ah, Firenze, here’s looking at you, kid.