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.

How Do You Write About Bad News?

Below is the post I put up on a local social networking site. I wanted to tell family and friends what they need to know, without having to repeat myself a million times. I know I’m repeating because people care, but the repetition can be a little emotionally draining as each person responds differently.

Still, every time I re-read this I think I could have done a better job. There’s not a good website for getting ideas on what to say or how to say it. I know it would be inappropriate, even for me, to be flippant or humourously morbid. But at the same time, I can’t bear to be miserable and fatalistic. There’s no right or wrong answer, but I’m not all that happy with my product.

Can you imagine going to a former teacher and asking her to critique your essay? Doing rough drafts to analyse verbs and adjectives? Pulling out a battered copy of Roget’s Thesaurus to make your writing less mundane?

On the plus side, I’ve done a pretty good job of maintaining a good frame of mind. Sometimes it’s hard to put on the brave face, but I think letting go (however good for the soul) would be significantly demoralising to those around me, who look to my every action or expression for clues on how to behave. Yeah, I know it’s all about me right now, but I think I draw strength from them not being gloomy, too.

Ah, well, it’s posted, so there’s no going back. Let’s hope my next overly emotional social networking post is the bearer of better tidings.

==========

No one likes to hear bad news, but being the one to give it is even worse. Unfortunately, that’s what I have to do.

My last PET scan showed my melanoma has spread to my T1 and T7 vertebrae. This was confirmed by two and a half hours in the MRI tube and a CT-guided biopsy. I also had a second opinion at Dana Farber in Boston.

Kate and I were kind of excited about finishing up our first year (24 August): I was not suffering many side effects (general fatigue and a loss of appetite) and we could almost see the end of the thrice weekly self-injections – well, on the plus side, I no longer need to stab myself! We’ve had many ups and downs this past year, with with medicine and PET scans and MRIs and biopsies and countless appointments and we were feeling pretty positive.

Being told I’ve moved to Stage IV for a malignant, uncurable disease was not on my bucket list. Uncurable, but not untreatable. Heck, since I had micrometastisis in my lymph node, I’ve always known I had a 70-80% chance of recurrence in 3-5 years. But that doesn’t really provide any comfort.

On the surface, this is very bad news, but it’s still not as bad as it could have been. I have two very small spots (probably because the interferon was working), they have newly approved treatments available and there are even more treatments being evaluated all the time. When your doctor says “You’re not the average melanoma patient” because “you don’t have a lot of melanoma” that is a Good Thing.

The really bad news is that historically the prognosis is about a year. But the “good” news is that’s based on NOT having the newly approved drugs. The doctor said people who do the drug seem to do better than those not taking it. I didn’t have the presence of mind to ask what exactly that means, but I assume it’s the intangibles, like positive attitude and pain management (and karma). Like any other medicine, how well it works can only be seen after you’re through the treatment. We know very few people receive what they call a “durable” benefit, which is essentially being “cured.” We know there’s a larger percentage of people who have either no growth or a reduction of the tumor, which is really good. And we know many people have no benefit, in which case we move to other treatments.

The boys know I have new spots of cancer and I’m going to get new medication. They know I’ve got some pain which limits how long or how often I can do things with them. They DO NOT know anything about the long-term prognosis. We’ve decided they don’t need that burden until we have a more defined timeline.

Right now I don’t know how I feel. I should be feeling denial or anguish or anger or depression or something. I can’t even say I’m hopeful or re-energised. I just AM. I don’t feel empty or devastated. I kind of feel bad that I’m not feeling anything. I am hopeful that it all works and that I am the 1% who gets a durable result. I am massively appreciative of my family and friends who have shown me so much compassion and support. Heck, if anything I feel guilty that I’ve got to place such an emotional burden on my family and friends.

Please don’t think I’m giving up or accepting my fate. I intend to do everything I can to ensure I’m around to annoy all of you for a really long time. I have really good doctors and nurses and hospitals (and insurance). And I have high expectations.

Again, I hate being the bearer of bad news. Quite frankly, I wish none of you needed to ever hear this about anyone you know. Take care and make sure you schedule an annual checkup with your dermatologist.

Year Two, Square One

My one year anniversary for having melanoma was 24 August and my wife and I were kind of excited because we keep moving forward, even when we suffered minor setbacks: the doctors and nurses have been fantastic, the interferon has been relatively easy on my system, my insurance has been BEYOND outstanding and we can start seeing the proverbial light at the end of the tunnel.

And now we know why melanoma is called predictably unpredictable.

My quarterly PET scan showed a “troubling” spot on my T7 vertebrae. OK, fine, we need more tests. So a few weeks ago on a Friday, I went in for an MRI on my brain and spine. The technician said the longest scan they do takes about two and a half hours. And that’s what I got. Lovely. That was followed up with a CT-guided biopsy on Monday. No problems with the biopsy, but they must have banged around in my muscle tissue.

You know it’s bad news when the doctor’s office calls to ask if you can come in a day earlier than your scheduled appointment. We both “knew,” but it seems so much worse when the doctor actually says the words.

So now I have stage 4 melanoma, which has spread to my spine. Good news: it’s not in my spinal column. More good news: no one has said the two bad words (terminal or fatal). In fact, the doctor started with telling us about six different treatment options, not including more clinical trials. I’ve already talked to the radiological oncologist and I’m getting a referral to go up to Boston (not my first choice because I hate going into Boston). I’m not a fan of Boston traffic or Boston parking. I like going to Providence, but they don’t have as many resources. And since I’m not a big fan of dying any time soon, I’m going wherever I can get treatment which will buy me the most time.

So that’s the facts. How do I feel about it? Frankly, I don’t know yet. I should be upset. I should be terrified. I should be angry. I’m not any of these. I’m empty. Not sad, not angry, not scared, not happy, not anything. I kind of feel like I went through the seven stages of grief in seven seconds and now I’m at acceptance. Only I’m not accepting it. I don’t know what I’m going to do, but accepting things is completely off the table.

Stupid cancer.

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.

The Saga Continues

Yesterday, I made a last-minute appointment with my dermatologist, nominally to have a look at my infections. I also had her do the whole full body scan, which I had scheduled for next week. Two birds, one stone.

So she took a look at my infections and she was satisfied with the variety of antibiotics. But she added a topical steroid to the mix, and two different moisturizers – a cream and a gel. At least my skin will be moist. My clothes will be moist, too. She did a culture of the infection which kind of looks like herpes (the kind that causes shingles, not the STD) so we’ll find out what it is soon enough.

Right now, everything is on hold. I can’t wrap my leg to start treating the lymphedema. I can’t learn how to give myself injections. All I can do is take antibiotics, dab on steroids and slather on moisturizer. And hope everything starts to clear up before the weekend. The longer all this lingers, the longer it takes to get through the process and figure out what my new “normal” looks like.

I’ve now got a refrigerator full of interferon and a bag full of hypodermic needles just waiting for the doctor to tell me to get to work.

In order to keep my sanity, I’ve been really good with keeping my focus on just the one issue at the forefront. It’s too hard to try to worry about three or four different things, with a dozen different variables. Right now, all I should be thinking about is getting over my infections. Unfortunately, my mind is wandering to other issues. What will the Medical Duty Review Board say about my lymphedema? Will I be able to stay in the military? Will I be medically retired or discharged? It matters because the retirement means more money. Oh, and then I need to decide what I want to do for the rest of my life, since I’ll still need to have a job. I’m spending way too much time worrying about losing my job when I need to focus on infections.

I just need to get my head screwed on straight and get my focus back. After that, the rest will fall into place.

And the Hits Just Keep Comin’

I have completed the initial four weeks of interferon treatment, which wasn’t too miserable. Not that any treatment is great, but I didn’t have too many side effects. I got the chills, but taking Motrin short-circuits those pretty quick. No nausea. No headaches. Just an occasional queasy feeling. And fatigue. That’s the killer. I never felt completely exhausted, but I always felt run down enough that all I wanted to do was sit down and nap. Every night I’d get in from treatment, sit in the recliner and rest. I feel bad that my wife has to wait on me so much, but I run out of energy pretty quickly.

But that’s not what I’m writing about today. Last Friday, I had my first physical therapy appointment with Sarah. She took a bunch of measurements of both of my legs, which is the first step of treating lymphedema. My right leg (the site of my melanoma) is, indeed, suffering from lymphedema. My appointments with PT for the next two weeks are supposed to show me how to wrap my leg to reduce the swelling. I am supposed to be mummified for twenty-three of twenty-four hours a day. Except she noticed a rash on my right ankle. Which I mentioned to the nurse when I went in for my last infusion. Which led to nurses and doctors gawking at my leg because I had another rash on my incision on my thigh. The doctor said it looks like herpes. No idea how that could have happened. Sure, cold sores and chicken pox and shingles are all types of herpes, but what the He’ll is going on with my body? Now I’m on two different antibiotics for a week, I can’t get my leg wrapped while sporting infections and I still need to learn how to self-inject.

I hate cancer and lymphedema. And infections.