16-ish Month Update

Note: This was actually written about 17 months after my original diagnosis.  I blame the miscount in the title on chemo brain.

Happy St. Patrick’s Day everyone!  Remember in these dark days of Covid-19 that cabbage is a good source of immune boosting vitamin C.

The world is truly going off the rails as a result of Covid-19, and I’m doing a happy dance.  No, wait, that came out wrong.  My happy dance is because I had a CT scan yesterday and it showed significant shrinkage in my tumors!  Chemotherapy is working!  I’m happy, but to some it may look like I’m fiddling while Rome is burning.

The oncologist shows us the scan before starting treatment alongside yesterday’s scan.  The large bladder tumor that crawled out of the prostate, the one that tried to choke my kidney to death, is significantly smaller and around a quarter of its original size.  That is every bit as good as I dared to hope for going into the scan.

My understanding of the way chemotherapy works is that it usually kills off a fixed percentage of the cancer every cycle.  For example, it may kill 50% of the cancer the first cycle, and then 50% of the remaining cancer the next cycle, leaving about 25%.  Conveniently this seems to be exactly what’s happening in my case.  With four more cycles to go it’s not unreasonable to expect the tumor to continue shrinking to 12%, 6%, 3%, and finally 1.5% of its original size.  At that point it may be too small to be visible on a CT scan, but most likely there will still be a small colony of very hearty cancer cells left.

After chemotherapy, I’ll continue indefinitely on the immunotherapy drug.  The hope here is to continue attacking what’s left of the cancer with my own immune system.  Any stubborn spots could also be attacked with radiation.  If I didn’t have such a great response to chemotherapy, I would have been referred for radiation treatment right now.  The end goal of all this in the best case scenario is to drive the cancer to such a low level that it has great difficulty trying to grow back.

And those metastases in my liver?  They’ve already shrunk to such an extent that they are all but undetectable in the CT scan.  That is fantastic news.  Cancer in the bones and bladder and prostate can be extremely painful but usually isn’t directly fatal.  Cancer in the liver or another vital organ is a different story.

The oncologist didn’t say anything about the primary tumor in my prostate or the metastases in my bones, and I didn’t think to ask (yet).  The scans were studied by both the oncologist and radiologist who spoke with each other.  If there were any spots in the scans to worry about, they would have told me.

This is the first bit of objectively good news for me in 2020!  It shows that the improvement in symptoms are a real reflection of the state of my cancer, and not due to some combination of painkillers and wishful thinking on my part.

Photo Ops
Some photos for those of you that don't follow me on Facebook (though there are a couple of never seen before photos included!).  This section should be considered the slick marketing brochure that makes cancer seem like a fun filled journey, and not representative of the overall experience.

When I started this blog many years ago, it was supposed to be about cars as much as about running, and cancer was never part of the plan.  Getting back to the original intent, here's me recently changing the oil in my Prius, a surprisingly easy job for such a complicated car:

Note the amount of hair loss / follicle damage my head has endured, that will be relevant when reading the next section.

And of course, any DIY service on a car should be followed by a celebratory scenic drive:

I also took a road trip down to Barre Falls Dam and had a walk along a short section of the Midstate Trail (which goes right down the top of the dam):

And finally, the last night of indoor track for the season, only days before everything started getting cancelled.

Blood Counts and Covid-19
Chemotherapy works by killing fast growing cells.  If you have an aggressive, fast growing cancer like I do, then it can actually work better than it does for somebody with a slower growing cancer.  The body has a lot of naturally fast growing cells like hair follicles, the cells that line the lungs and digestive tract, and blood cells.  These cells are all killed by chemotherapy, but they will recover and with a bit of luck the cancer won’t.

As evidenced in the "oil filter" photo above, my follicles have been largely decimated by chemotherapy.  What's not visible in the pictures is that my lungs and digestive system have been equally affected.  After a few quick steps and a jumping catch in that last photo, I'm practically out of breath.  The digestive damage shows up as a tendency to have frequent and sometimes loose bowel movements.  To whoever has been hoarding all the toilet paper, please think of me and return the unused rolls to the store, or things will get rather messy in a few weeks.  Trust me, you don't want to see the pictures of that, and my past history shows that I will post them.  That's our agreement: no hoarding TP, and you won't have to look at any messy pictures.

Most chemotherapy drugs will affect blood counts, but the nature of the effect varies with the drug.  On the Docetaxel chemotherapy I had last year, my blood counts would plummet in the first week, and by the end of the cycle regularly rebounded to above normal levels.  I felt reasonably safe in public because for part of each cycle my immune system would be working very well, and there weren’t any uncontrolled viruses going around killing people in significant numbers.

It’s very different this time around.  Carboplatin and Etoposide both have a longer laster effect on blood counts.  My counts don't bottom until the second week, and haven't recovered to normal levels yet by the start of the next infusion (but have recovered enough to make the oncologist happy).  The count that really matters for immunity from infections is the absolute neutrophil count, or ANC.  Before chemo, mine would vary between 4 and 7, but anything above 2 is considered normal.  I've been bottoming out during chemo at about 0.5, or roughly 10% of my normal infection fighting ability (assuming it's linear with blood counts, "I'm not a doctor" disclaimers apply).

Levels below 0.5 are considered severe neutropenia, and the risk of infection skyrockets.  Forget Covid-19, we're talking about being careful flossing your teeth, because if your mouth bacteria gets into a bleeding gum it could spiral out of control, leading to hospitalization and IV antibiotics.  I've also heard recommendations to avoid shaving with a razor and avoiding fresh fruit and uncooked vegetables.  Of course I'm only just reaching that level, and only for a relatively short time.  But, my counts aren't rebounding above normal like they did last time.

The other problem is that when my counts do recover to almost normal, I'm already into my next cycle and on a high dose of an immune suppressing steroid to help control the side effects of treatment.  When that wears off my counts are already dropping again.  There's really no time where I have full immune function.  As a result, I was becoming socially distant before it became trendy.

Enter Covid-19, and I have developed a serious aversion to people.  So of course, when I went to the hospital for my CT scan, they were directing everybody through the ER entrance so they could screen people (have you been out of the country?  Do you have a fever?, etc.) and immediately isolate them if needed for further evaluation.  This is all to protect the staff and patients in the hospital.

And now the funny bit:  Who is the one person in the entire hospital who could process my co-payment for my scan?  Why, the receptionist at the emergency entrance of course.  Next question: Where would somebody with a severe case of Covid-19 go for treatment?  To the emergency entrance of the hospital!  Did I mention that my CT scan was scheduled when my immunity was at its lowest?

This all led to the death defying “Super Dave Osborne” stunt of my life:  Standing around waiting at the entrance of the ER with a compromised immune system.  This was social distancing done exactly wrong.  The staff had masks and healthy immune systems and talked about the guy in really bad shape who was just admitted, probably with only a severe cold.  I had nothing to protect me and waited while the receptionist battled an uncooperative printer for some time trying to get my receipt.  If I’m dead of Covid-19 in a couple weeks, blame the printer.

On the bright side, I had stopped worrying about what my scan might show.

And now I return to my social isolation, heading outside only to exercise or go for a walk in the woods, and maybe occasionally hang around at the ER entrance.  But hey, I’m an adrenaline junkie who will happily put my life in danger for the next adrenaline rush.

Day 504, Second Chemo Cycle

Here again we have a case where I wrote a blog post to commemorate 500 days since my original cancer diagnosis, and most of it went into the trash bin as being too negative and depressing.  The problem happened when I started thinking and writing about how I spent those 500 days, and only about 200 of them were in a state of relative good health.

Mathematically, it wasn’t a good ratio of days spend suffering symptoms and side effects to healthy days, and I found that depressing.  It may be accurate, but it’s not a helpful way to look at the experience of living with cancer.

I am not in good health today, having spent the previous three days getting three infusions of chemotherapy drugs.  But let’s back up a bit.  Prior to chemotherapy, during those 200 days of relative health, I was on about 8 drugs to control my cancer as well as manage more sundry things such as cholesterol.  With yet another cancer diagnosis and the start of more chemotherapy, that number has zoomed to 20 or more this week.

That number includes an immunotherapy drug, two chemotherapy drugs, and a handful of drugs to control the side effects of those drugs such as the anti-nausea medicine Zofran.  Drugs like Zofran didn’t exist decades ago in the early days of chemotherapy, and many patients would vomit to the point of needing hospitalization.  I’ve only suffered periods of queasiness of perhaps an hour or two between doses.

Of course, Zofran causes constipation, so add Senokot to the list to keep me moving.  Now add Imodium because the chemo drugs eventually cause diarrhea, and that happened a bit earlier than expected this cycle.  It gets a bit messy when I mis-time the changeover.  It’s also one of the many reasons I’m very happy to be on disability leave and not trying to manage such things in an office environment.  How some people work through chemo and keep their cancer a secret I’ll never know.

Here’s another great drug they’ve given me: Decadron.  This is a powerful steroid.  The doses I’ve been given over the last three days are the equivalent to almost 300 mg of Prednisone.  It also helps with nausea, but also suppresses any immune response to the chemo drugs and relieves pain.  I’ve been pain free without steroids since Monday morning.  Side effects include improved mood and energy, which means I’m able to get off the couch and exercise a bit.

Exercise during chemo is hugely important.  Emerging evidence is showing that exercise can make tumors more responsive to treatment.  I’ve gone for at least a walk every day this week.  Some have included short bits of jogging.  Yesterday I even spent about 10 minutes tossing a frisbee around with a friend, including a few short sprints to make a catch.  It felt awesome because after my original diagnosis I couldn’t move like this due to too much bone and joint pain.

So despite the ridiculous amount of chemistry going into my body, I’m out getting exercise which will help fight my cancers instead of sitting in a hospital room vomiting.  In this case, better living through chemistry is a real thing!  I am not an super hero, though I sometimes portray one in this blog.  Mostly, I’m a guy that had some fitness prior to chemotherapy and have benefitted from both that and advances in cancer treatment.

That said, I do spend a lot of time resting on the couch and binging Netflix when not playing games on my tablet.  Later today the support medicines will start wearing off as the collateral damage from the chemotherapy builds, and I’ll go through several days where I’ll be mostly offline to put it politely.  By the end of the weekend the worst of that should be over.

After that, I’ll start to feel better but my immune system will be decimated.  This means trying to avoid crowds and sick people.  What would normally be a routine infection for a healthy person can result in hospitalizations and even death during chemotherapy.  I don’t just worry about coronavirus, I worry about every virus and bacteria. 

With luck, the immune system will recover just in time to start the next cycle on schedule.  It didn’t fully recover to normal levels after the first cycle, but the oncologist deemed it more than good enough to continue with treatment.  This is a distinct difference from the chemotherapy I went through last year.  That was a different drug which decimated my immune system earlier in the cycle, allowing time for it to recover to above normal levels before the next cycle.

This latest diagnosis caught me completely by surprise.  The frequent testing was supposed to be an early warning system for the return of cancer, but my new cancer is a type that can’t be detected in blood tests.  I’m fighting cancer again much sooner than I was expecting.  I was hoping to live in partial remission progressing to complete remission over several years.  I only got six months.  Technically I’m still in remission for my other cancers, as my oncologist considers this a third and separate cancer diagnosis.  I haven’t figured out if that detail makes me feel better or worse.

Weight loss was a problem in the first cycle of this chemo.  I had been trying to eat healthier to keep the cancer away, but that goes out the window during chemo.  In addition to the obvious hair loss, chemo is also damaging my digestive system and lungs.  Food doesn’t taste as good and I don’t absorb nutrition as well.  Raw fruits and vegetables are not only hard to digest but can introduce bacteria that are an additional challenge for a compromised immune system.

Between the weight loss and depression over my diagnosis, I went on what could be called a sausage party (to misuse a slang term).  Sausage in my omelettes, sausage on pizza, sausage and peppers on pasta.  I like sausage like many people like bacon, and had all but stopped eating it in the past year.  Now I’m having it every few days.  It’s tasty, low fiber, and calorie dense.

In the context of chemo, this isn’t entirely a bad thing.  Weight loss causes all sorts of problems such as loss of lean mass and can further compromise immune function.  My mantra has been to obtain a healthy weight first, then worry about eating healthy food second.  Of course, I’m one of the rare people trying to gain weight, not lose weight.

And now for the happy ending to this post (again, misusing a slang term).  There are signs that chemotherapy is working very well.  All that excruciatingly painful urination I blogged about recently?  Mostly gone.  What pain is left is probably due to the presence of the stent and is entirely tolerable.  My bladder capacity has also increased allowing me to sleep for several hours between bathroom trips, which for prostate cancer patients is a huge deal.

Such signs of progress have greatly lifted my mood.  While my prostate cancer diagnoses have been extremely bad, my responses to treatment have generally been extremely good.  I now have concrete reasons to hope that pattern is repeating again.  Hope may not cure cancer but it certainly improves quality of life.

Hope is why I’ll be cutting back on my sausage intake again, if not immediately then at least in the not too distant future after my weight is stable.  It’s what gets me out and exercising.  These are all things that science is beginning to show helps with cancer survival.

Immunotherapy is another reason to hope.  It frequently doesn’t work well, but when it does it produces spectacular results.  I’m talking to more and more patients who  have been on it for years, have clean scans, and are eventually getting off of all cancer treatment.  We advanced cancer patients are careful never to use the word “cured”, and there will always be lifelong consequences to treatment.  But the thought of no longer being dependent on some obscenely expensive pharmaceutical to merely stay alive is a huge thing to look forward too.

No need to worry about the drug companies, they’ll make a tidy profit off me in the process and the cancer patients that follow me.

Treatment appears to be working, I’m not having any life-threating side effects, and spring is coming.  Things will get worse before they get better as the side effects build with each cycle, but there is hope.  By summertime I should be in the process of getting back to good health, and there is every possibility that I’ll greatly benefit from current and soon to come advances in cancer treatment.  Immunotherapy should help fight all my cancers.  Complete remission from three cancers is still a possibility.  That and signs of progress (and the steroids) are helping lift my mood.

Please remind me of this during the dark days to come this weekend as the side effects consume me.