That's What She Said

 My previous post was very cathartic. I got to tell the story of how I genuinely felt like I was dying.  I’ve recently heard that the average survival for neuroendocrine prostate cancer is about a year, and based on the anecdotal stories I’ve heard, that might be a bit generous.  December was a very difficult month.  My body was telling me something was direly wrong, and I know how serious my diagnosis is.  I wrote about it and got all my worries and fears out of my system for now.

Today I’m feeling much better.  It’s the final day of my second cycle of folfiri chemotherapy.  Just like the previous cycle, on the final day I started feeling a lot better.  When I listen to my body, it’s not telling me tales of impending doom.  I feel almost normal.  Better yet, it’s been about a year since my most dire cancer diagnosis, so I’ve beaten the odds and a bit of celebration is in order.

Today my wife and I took a trip to our Vermont hideaway.  Rather than just tell the story, I thought I’d do something different and make a short video showing me shovelling the path to the side door.  I can say I’m feeling good, but a video of me chucking snow would be much more convincing.  It turned out that video captured a moment that I found to be exceptionally funny.

But before getting to Vermont and the video, a short detour.  The flip side of feeling good on the final day of the chemo cycle is that tomorrow is infusion day, and I know what’s in store for me in the coming week.  In about 18 hours after I write this, I’ll be hooked to not just one, but two IV pumps feeding drugs from two IV bags into my chemo port.

After 90 minutes of that, I’ll get the third drug of the folfiri cocktail.  This consists of an initial dose pushed into my port via a syringe, then a portable pump is hooked up that will deliver the rest of the dose over the next 46 hours.  Here’s a photo from last cycle, topless so you can see the pump and the tubing leading to my chest port.

I’ve gotten a lot of comments on my topless photos in the past.  Not all positive, but like publicity, any comments are good comments.

After the pump is removed on Wednesday, I typically sleep most of the day on Thursday and Friday, then start feeling a bit better around Saturday.

In my previous post I spoke of the challenge of learning to live within my reduced ability to do things. In theory doing less each day would mean I’d have more days where I could at least do something. There's two problems with that approach.

Firstly, some tasks can't be made smaller. For example, driving myself to a follow-up appointment. It's a couple hours in the car plus about an hour of getting my blood tested and meeting with the nurse practitioner. My wife could drive me, but it doesn't appear that driving is the issue. It's the two hours in the car getting my insides jostled about that's the problem.

And so, I fell into a pattern of doing something meaningful every other day, then resting on the day in between. That was until Friday.

Friday I went for a 1.0 mile walk. Saturday, as expected, I felt tired and sore as a result, but instead of resting I took a variety pack of pain medicine and went out for a 1.2 mile walk.  In theory I should have been a complete basket case today, Sunday.  But I wasn’t, which is the second problem with trying to do less.  Some days I can do much, much more than I can do on other days.

I didn't go for a walk today. Instead my wife and I took a trip to our Vermont hideaway. While it rained in southern New England, the foothills of the Green Mountains got 6-12 inches of snow.  While we have hired someone to plow the driveway, we still shovel the walkways and the deck ourselves. You might think we bought the place because of our love of shoveling snow, and I'm not sure I could argue against that successfully.

I will say that one of the things that routinely makes me sad is when I realize I spend more time in my oncologist's office than in Vermont. It's an unfortunate confluence of chemo side effects, appointments, the weather, and caring for a diabetic cat. We had a lovely multi-day visit in November, and it really bugs me that I haven't been able to repeat that yet.

But here we are now. I wrote the first draft of this by the warmth of the wood stove before we headed back to our other home. Even though I didn't walk today, I did help with the shoveling, and as mentioned earlier had my wife shoot a short video to prove it.

Unfortunately, it’s difficult to hear what I’m saying, but it should be pretty obvious that my shovelling was interrupted by a tree branch buried in the snow that was too large for me to lift and toss aside.  To me, this was very symbolic of how difficult it is to get wood up when you no longer have testosterone due to cancer treatment.  With such analogies in my head, I found my wife’s comment about the size of the branch to be intensely funny, and if you couldn’t hear it my response was “that’s what she said”.

It was an incredibly juvenile joke, but to me it was the funniest use of that sentence in my entire life.  It had several layers of humor in this context.  Firstly, my wife sounded genuinely surprised at the size of this long, hard branch.  Secondly, “that’s what she said” is actually a statement of fact.  I’ve been laughing about it all afternoon.  I’m not sure if it’s really that funny, but it’s certainly been more fun laughing than crying.

After that unexpected bit of hilarity, my wife took a video of me clearing the branch with a chainsaw.

When I watched this afterwards, my first thought was my victory pose at the end would have been mind-boggling dangerous if the saw was still running.  I want my audience to know that I stopped the Stihl (conveniently pronounced “steal”) after the last cut, so there was no significant danger in my celebration.

I did all that activity without any meaningful pain on only my base level of pain medication (no additional pills taken for “breakthrough” pain).  Yippee!  As a footnote, this is strenuous enough to get the endorphins flowing which are the body's natural opioid painkillers.  It's why being active is so good at fighting pain and fatigue and also helps lift your mood.  When I can’t be active, I’m usually downright miserable.

The next week will be difficult, as usual, but in the long run it should allow me to spend more quality time in Vermont shoveling, cutting up trees, walking, perhaps even running, and occasionally pausing to admire the scenery.  I’ve bounced back from treatment before, I can do it again.

To the Edge and Back

 It's been a while since I posted. Last time it was about the 5K I "ran" on Thanksgiving.  Since then, things have gone off the rails, and it's not an exaggeration to say treatment almost killed me. I’ve had a glimpse into the abyss of impending death, and with the help of my medical team have managed to claw my way back to the land of the living.  I tell the story of my experience because many a cancer patient has not come back to be able to tell their story.

Let’s start with running, or rather, the lack of any running or any regular exercise.  Anemia made me too weak for that. Now that my red blood cell counts are recovering, I'm too weak from treatment and atrophy due to lack of exercise. I haven't given up trying, but haven't yet attained the critical mass where I'd say I'm exercising regularly.

I became anemic because of side effects from Cabazitaxel and Neulasta.  My red blood cell and platelet counts plummeted.  My liver enzymes skyrocketed.  My cancer grew unchecked and a mid December scan showed about half my liver was occupied by cancer.  This is what could be called a precarious predicament.

Chemotherapy is poisonous to all cells in the body.  It’s only given if blood tests show that it’s safe to do so.  A compromised liver and/or kidneys are a problem because most cancer drugs are metabolized by the liver and excreted by the kidneys.  If these organs aren’t working, the poisonous chemo will stay in the body far longer than intended, and do far more collateral damage.  Chemo stops the marrow from making blood cells.  If platelets start out low, and drop further, it can cause uncontrolled bleeding.  If platelet counts reach the single digits, it’s possible for brain hemorrhages to spontaneously happen.  Giving chemo when the body is weakened can kill the patient far faster than the cancer.

My platelets had dropped as low as 64 from the mid 100s over the course of about a month.  It was an ominous steady decline, and not the brief drop and partial recovery that normally happens over the course of a chemo cycle.  The nurse practitioner said if I was below 50 they’d delay treatment until the counts recovered.  Below 20 they’d give a platelet transfusion.  They would not give a transfusion to get me above 50 so I could withstand treatment.  These are the sorts of conversations I’ve been having with my medical team.

One of the more common “died from cancer” stories goes like this:  Patient receives a cancer treatment.  Subsequent blood tests show it is unsafe to continue treatment, so they wait another week and do another blood test.  This blood test shows things are continuing to worsen.  The patient never receives another treatment, enters hospice, and dies a few weeks later.

This was very much in my mind when we switched to a different chemotherapy cocktail.  If my platelets continued dropping at the rate they had been, I’d be well into the “no treatment” zone well before the second cycle.  Simply put, several of my blood tests needed to reverse course soon or I’d be another cancer casualty with surprising swiftness.

But I hear you thinking that I just walked a 5K at the end of November!  How could I possibly go from that to passing away in about two months?!?  Very simply: I was going downhill fast due to a double whammy of spreading cancer and accumulating side effects of treatment.  It was a race of sorts.  The chemo wasn’t killing the cancer but it was killing me.  The question was would it kill me before the cancer?

My strength faded with my blood counts.  My pain levels increased until I was taking 30 mg of oxycodone a day.  That’s not a lot by cancer patient standards, but as the phlebotomist put it, I’d be in some significant pain without it.  He was quite right.  On the ride home from Dana Farber my pain meds were wearing off and I didn’t have another dose with me.  Each bump in the road jiggled my cancer and chemo damaged innards, and I’d wince in pain.  Have I mentioned that Boston roads in the winter have a few bumps?

One morning I woke up in significant pain.  I had to ask my wife to go downstairs and get my pills for pain and nausea.  An hour or so later, after they took effect, I was able to put on clothes and go downstairs.  After that night, I started leaving some pills and a bottle of water at my bedside so I could medicate myself accordingly if symptoms and side effects were interfering with my sleep.

I started asking my wife to bring me a lot of things.  Food, pills, the heating pad, a bucket in case I threw up, a cool facecloth for the back of my neck to help with nausea.  On my bad days I had to save all my energy for trips to the bathroom.  Walking from the couch to the toilet and back was an exhausting exercise.  I literally was avoiding trips to the kitchen to get things for myself because then I might not have the energy to get myself to the toilet when needed.

Allow me to point out how truly scary this is.  What would it be like if things got even worse?  Could I get to the toilet with walker?  Or would I need a commode that could come to me?  I made a Facebook post during this time about being happy to still be able to wipe my own ass.  I’m sure people thought I was exaggerating, but I assure you I was not.  Any further loss of strength and it would be time to arrange for people to come to the house to help me bath and put on clothes, etc.

I watched my father-in-law die of cancer, and have heard numerous other stories online.  Things can go to shit in an awfully fast hurry.  I honestly believed that if my new chemo didn’t work, I was on a path to start hospice in early January and be dead a few weeks later.  I felt awful that my wife would have to spend Valentine’s day and her birthday without me.

On the Monday before Christmas, with my platelets at 64 and my hemoglobin in the single digits, I received my first infusion of folfiri.  Like all chemotherapies, the first week was quite rough.  I effectively slept all day on both Christmas eve and Christmas day, only getting out of bed to go to the bathroom, eat something, or take pills.

At my follow-up appointment the following Monday, I got the best Christmas present ever.  I was feeling a bit better, and my blood tests all showed improvement.  I would be healthy enough to receive further treatment.  In a way, I am calling more chemo the best Christmas present ever, which is a bit masochistic I suppose.

This should not be interpreted as “I’m cured”.  Far from it.  The best I can say is that there are paths for me to get back to being healthy and active, and that those paths likely involve finding a clinical trial for a non-chemo treatment.  For now, it’s best to say I’m not in imminent danger of death.  My ass has been pulled out of the fire is how I have described it.  My wife will likely have to tolerate my presence on Valentine’s Day.

What lies ahead for me?  More folfiri, and then a scan probably around early February to assess how well it’s working.  Folfiri is given every two weeks, and it’s looking like the first 9 days are pretty difficult due to side effects and fatigue.  That gives me about 5 days every two weeks to live my life, and these aren’t 5 full days mind you.  They’re 5 days where I get a few hours of feeling reasonably well and able to do stuff.  So, as a rough guesstimate, I get about 20 hours to actually live every two weeks.

It’s a bit stressful trying to “seize the day” when you have so little time to do so.  I’m also never quite sure when those 20 hours will occur.  I’m more likely to have a bad day when the weather is bad or cold.  Warm sunny days make me feel a lot better.

In a future post I’d like to go into some detail of my genetic test results, but for now suffice to say I didn’t have any mutations that would match me up with one of those fancy new treatments you see on TV that produce spectacular results for some patients.  In fact, the genetic test said the atezolizumab I had been on previously was unlikely to work for me.  That’s a lot of additional side effects I went through, not to mention the exorbitant price paid by my insurance company, for no real benefit.

At my last appointment, I asked if it was possible I could get a great response from folfiri, hoping that yes, they’ve had several patients that have had much better and longer lasting responses to a treatment (not necessarily folfiri) than they expected.  The response was a little more nuanced than I hoped for.  My cancer is wide spread and very aggressive.  These cancers do tend to respond well to treatment, but they also tend to come back after a brief remission.  Most likely, my future will involve being on and off of various chemos as I bounce between remissions and recurrences.

On and off of chemo for life.  Oh joy.  Oh bliss.  Oh rapture.  Not!

At this point, I am so utterly sick of chemo.  I was really hoping there was a decent chance of getting a year or more of remission, but those hopes have been tempered.  I’m really hoping to find a clinical trial for something besides chemo so my bone marrow can get some time off from the near constant assault it’s had for the past year.  But I don’t know what that clinical trial will be, only that Dana Farber has two trials opening up around springtime that might be a fit for me.

As I regain my strength, it’s something I can spend part of my time investigating, but do I want to spend my 20 hours every two weeks looking for ways to stay alive?  Or do I want to spend those 20 hours living life to the best of my abilities?  It’s a conundrum.

Clinical trials are no easy path.  I’ve already been warned that one would require a hospital stay of about a week for each treatment, to guard against the possibility of a cytokine storm where the immune system overreacts in a manner that could be fatal.  That might be worth it if it could give me a long term remission.  If we’re talking about adding only a month or two of survival, I’d rather spend my remaining days in Vermont than a hospital.

There’s other treatments I’ve heard of that I wouldn’t consider even if I did qualify for them.  There’s a treatment called Lu-177 that’s experimental in the US but already approved in other countries such as Germany.  Many patients fly to Germany for each treatment, then fly back home between treatments.

Lu-177 is a radioactive treatment.  For the first several hours you’re isolated in a room alone, as you’re too radioactive to be around people.  When you leave the facility, you’re suppose to ride in the back seat of the car on the opposite side from the driver, so as to limit radiation exposure to the driver.  This treatment has all the usual cancer treatment side effects, particularly in the digestive system.  I heard of one person who got severe vomiting or diarrhea (I forget which) on the flight back home.  I don’t like air travel normally, I don’ want major digestive distress halfway across the Atlantic.

I am increasingly questioning how much treatment I want to endure.  It’s a tricky issue.  In theory, treatment prolongs life but reduces quality of life.  Of course, that hasn’t been my experience.  My carboplatin cocktail eliminated painful urination after the first treatment, and certainly extended my life.  On the other hand, cabazitaxel almost killed me and gave me horrific quality of life.  So for, folfiri is looking like a potential win-win, though it’s hard to tell if it’s killing cancer, or my body is just recovering from the cabazitaxel damage.

I’m really learning to take things one day at a time.  I’m back to driving myself to follow-up appointments.  I go and get things for myself from the kitchen.  I positively bounce up and down the stairs.  I’ve tried a couple walks with mixed results.  At the moment, running an errand is enough to tire me out, and exercising on top of that can put me out of commission for more than a day.

At my last appointment it was suggested that a mile walk might be too much for me, and perhaps I should start out with a shorter walk.  About 15 months ago I ran a half marathon, and now 10% of that distance is too much?  That’s very difficult for me to wrap my head around.  But I’m hoping that by early February the scan will bring good news and I’ll be back to walking regularly, although the distances may be shorter and speeds slower than I ever imagined.