This is more a blog than one of our normal posts.  It’s long and you don’t have to read it and if you choose to do so, don’t feel obligated to like or comment on it.  It’s just something that’s been going through my head a lot recently and I felt the need to express in writing, hoping the thoughts would cease.  It all started a while back when my wife asked me how much I thought about my cancer and I had to admit to her that it still never really leaves my mind, at least up to this point.

Woke up at six this morning.  Couldn’t go back to sleep.  Too many thoughts running through my head.  It’s been a year this week, 12 months since we got my diagnosis.  CANCER.  MUTLIPLE MYOLOMA.  STAGE 3.  NO CURE.  MANAGABLE.  The first thing we did was look it up on the internet.  Stage 3 life expectancy, 1 year.   12 months.  How could this be happening to me?  I’ve never smoked, seldom drink, never been a partier. Actually pretty boring.  Cancer was something other people got.  No family history.  It can’t be me.  A year seemed so long when we were kids.  Not so long as we grow older. 

I saw the tears well up in Kathy’s eyes as we read.  We called family to let them know.  As soon as they answered the phone I would choke up and couldn’t talk.  I’d have to pass the phone to her and let her give the bad news.  My brother in law had died fairly recently.  Listened as my sister had talked about how he had just expressed how he had been so content, so happy with their life.  I fully understood what he had said.  I’ve had a good life.   No regrets except obviously the cancer diagnosis and probably missing the grandkids growing up, graduating, getting married.

What were we going to do?  We need to travel, see things and do things while we could.  After all, we’d saved our money, were comfortable and could afford to do what we wanted in the next 12 months.  But we couldn’t.  Family was here.  Grandkids were here.  Treatment was here. 

So it began.  Chemotherapy twice a week.   Doctor appointments every day, often 2 and 3 appointments per day.  This went on for what seemed like months.  Your bones are too brittle.  Stay off ladders and stairways.  Give up golf and hunting. Don’t fall, you can’t afford to break anything.  Might need pins in your hips to stabilize them.  Don’t lift anything over 10-12 pounds. That’s only 2 gallons of milk.  My granddaughter weighed 28 pounds.  Listening to the oncology receptionist making an appointment for me to see an ortho doctor, she tried to be discreet but couldn’t help overhear her tell them that the MRI showed the cancer was everywhere, from knees to top of his skull.  Did you know there were dentists who specialized in cancer?  Ortho doctors too, no big surprise there.  Saw them all.  The plan was for a stem cell transplant.  Our family doc asked why.  His brother in law had died after a stem cell transplant.  We had to trust our oncologist.  12 months is such a short time.

 The support from family and friends, especially old high school friends on facebook, IM’S and texts was especially gratifying.  People I hadn’t seen for years.  Some I had never even talked to in school were now reaching out to me.  So thankful to all.

Chemo started the first week of September, 2019.  Initially there was fever which required hospitalization to determine the cause.  The cause was a short reaction to the chemo, lasted a few days and was gone.  The problem was during the medical questionnaire, I mentioned my dad had TB when he was young.  That turned my short stay into a long stay, isolation and testing 3x per day only to show no TB.  NEVER MENTION TB AGAIN!

Onward with the chemo, 2 days per week, along with a long list of oral drugs.  No real reactions to the chemo.  Actually felt better after the chemo sessions.  The oral drugs caused minor problems including worsening of neuropathy in feet and arms, loss of taste buds and other minor things.  Chemo lasted for 4 months leading up to the stem cell transplant in mid January.  A couple of days prior, they began harvesting my stem cells for later re-implantation.  The next day I received a massive dose of chemo to kill off all my blood cells and cancerous bone marrow. It also killed off my entire immune system. Immediately admitted into the hospital isolation ward.  The next 2 days they began infusing me with my harvested stem cells.  Now the side effects began.  No appetite, puking, and the worst humiliation (at least for me), hair loss.  I didn’t really notice the hair loss until the one day, the nurses kept insisting I take my daily shower early in the day.  When I finally relented and returned to the bed I realized what the problem was.  The bed was covered in dog fur, actually all my hair had fallen out over night.  Suddenly bald as a babies butt.  Blood draws, the worst.  The nurses couldn’t hit a vein if my life depended on it. Seven pokes the first night before getting lucky.  It did get better over the next few weeks as they had plenty of practice.  14 days in isolation.  The few visitors allowed had to mask up.  Daily walks around the corridors to build my strength up, wearing masks and full gowns.  20 laps to a mile.  Lots of Goodrich malts to add back my weight loss and because chocolate was one of the few things I could taste.  They called the transplant day my new birthday because it would hopefully give me a new lease on life.  After 14 days, the doctors called it successful, my blood levels were going up.  Time to go home.  12 months is such a short time.

No immune system so have to avoid crowds.  If I did venture out it had to be with mask and gloves followed by 20 seconds of intense hand washing when I got home.  I was a trend setter, this was before covid.  Now I don’t stand out as much when I venture out cause most people are wearing masks.  The best thing after the transplant was having 3 months off of the chemo treatments.  3 months is also a short time. We started attending cancer survivor meetings.  Learned lots and enjoyed the stories, lessons learned and support from others.  When my hair began to grow back one of the fellows offered to buy me a toothbrush so I could begin combing it.  It also came back different.  Mostly straight and brown before, It  was now coming back more black and gray, fuzzier and curly.  Kathy said it had the consistency of a poodle.  Never did like poodles.

I began weekly chemo treatments again in April.  Smaller doses and only once per week along with the old oral drugs.  They called it maintenance treatment at first, now they call it consolidation treatment.  The weekly chemo will go on for the next 2 to 3 years.  Weekly blood draws at the chemo treatments and monthly visits with the oncologist.  Only minute signs of cancer showing up in these tests now but stopping the treatments will bring it roaring back.  No cure, but maintainable.  The 12 months has turned into 36 months or more.  Then I hopefully will be able to stop the chemo infusions and get by with the nightly oral chemo drug, that’s now what they’re calling the maintenance treatment.  They also started giving me my childhood immunizations and bone strengthening drugs back in April.  The immunizations will take 2 years to complete just like a newborn baby. Have to keep wearing masks and avoiding crowds during that time.  I’m on the same schedule as my latest granddaughter.  Also was able to return to playing golf this summer and snuck out to turkey hunt a couple days during the spring.  Kept that little item from the doc so he couldn’t say no.

It’s been a short 12 months but at this point, things are looking as good as they can be.  I’m doing everything I was doing before and really enjoying this second opportunity I’ve been given.  Still, 36 months is such a short time especially since 12 have already gone by.  Finally, don’t believe everything you read on the internet.  That 12 to 36 month life expectancy isn’t going to apply to me.