My Leukemia Journey

I was never one of those people who record every day’s activities on my web pages because nobody really has enough interest in me to care about every detail of my everyday life, but in reflection I do wish I’d recorded more of my days in treatment for cancer.  These are a few pages about the most significant parts of my experience since initial diagnosed in late May 2019 up until now.

If you’re dealing with cancer or have a loved one with it and want my unprofessional advice or opinion, feel free to ask, but remember that your medical team is the absolute best source of information and advice.  Beware of wacky web pages with idiotic suggestions… everybody’s journey is unique, but the medical community has a huge stockpile of research to guide their suggestions.  I have always followed the recommendations of my medical team 100% and am now in remission.  Yes, there is some luck involved, but I’m very glad I didn’t decide to ignore advice from my doctors.

How It Started

I have always been an active walker, doing as many as 3 t0 10 miles a day, several times a week.  During my lunchtime walks at work, the muscles around my ankles began to get very sore in less than 1/2 mile.  Trying to push myself harder didn’t improve the situation.  One night I was mowing the grass and had to keep stopping because of shortness of breath.  My doctor ordered a blood test and called to say I needed to immediately go to an emergency room, as I might have leukemia.

Spent most of a Saturday at Voorhees Virtual (Voorhees, NJ) where they said they did not specialize in leukemia so they transferred me to Cooper Hospital (Camden, NJ).  While at Virtual, I walked around the hallways to keep busy and noticed a sign saying ONCOLOGY in the hallway.  I had heard of leukemia but knew nothing about it; the sign on the wall scared me.  In 2016 my oldest sister Marilyn passed away from gum cancer, and in 2018 my youngest brother John died from prostate cancer.

Initial Treatment, late May 2019

Cooper immediately did a bone marrow biopsy to determine how bad the cancer had spread; initially everyone was looking at cancer cells in the bloodstream but since leukemia is a cancer of the bone marrow, that was where they needed to get better samples from.  A bone marrow biopsy is not the most pleasant thing, but is nowhere as bad as it sounds when the doctor or nurse practitioner first explains it.

A PICC line was installed.  Again, this sounds much worse than it is.  Once in, it’s painless and makes it much easier to draw blood and give medications.  Cooper’s policy is that they do not use a PICC line for drawing blood, so I had to endure several blood draws a day all from my left arm.

They started me on “7+3” chemo.  Sorry, I do not remember the names of the two chemo drugs, but it’s the standard first treatment.  The chemo lasted a week which did not seem to bad,  My initial thought was “gee, that wasn’t nearly as bad as I had imaged” but then the bad stuff started hitting the next week.

After a month, my blood counts were getting better but the level of cancerous cells in my blood were still very high.  Another bone marrow biopsy showed that the chemo did not kill much of the cancer.  Unknown to me, the oncologist told my wife to start preparing for palliative care, without telling me how serious it was.  Cooper suggested I transfer to the Hospital of the University of Pennsylvania (HUP) since they are a teaching hospital with a lot of clinical trials.  So I took an ambulance ride over the river to HUP.

Now at HUP, late June 2019

The HUP doctors said something seemed wrong with the latest bone marrow biopsy results from Cooper, so they wanted to do another.  I learned a very important lesson here: doctors are terrible at doing biopsies!  Painful!  Always ask if a Nurse Practitioner can do the biopsy!  Does that sound odd?  Who would be better at repairing your car, the engineers who designed it or the folks who repair them all day long?  Sure, the engineers know all the technical details but don’t know how to hold a wrench properly.

After a week at HUP they determined the initial chemo was much more effective than Cooper had determined, mostly because the doctor who performed the initial biopsy at Cooper made an error in collecting the sample.  Again, doctors are not good at bone marrow biopsies!

So I was released, with the intention coming back in a month for another much more intense chemo treatment.  I spent the 4th of July at the hospital but got to see some fireworks from the windows at HUP.

Finally Home, early July 2019!

I had to be extremely careful about exposure to germs, bacteria, etc, given my extremely weakened immune system after having almost all of my bone marrow destroyed by the chemo.  My wife and kids did all the cooking and cleaning for me.  I stayed at home wearing a mask, and this was long before COVID.

Unfortunately, I had chills on my fifth day home, took a nap, and woke up with a fever.  The oncologist said to head right to the ER at HUP.  Sure enough, I had some infection, so I was back in the hospital.  Once the infection was under control, we decided I should start the stronger chemo treatment.  Much stronger doze.  I ended up in ICU twice according to my wife but I only vaguely remember being in ICU once.  Definitely had “chemo fog” for many weeks and it was very hard to do anything like reading, writing software, time didn’t really make much sense, couldn’t tell one day from another, couldn’t tell what time of day it was, etc.  Lots of bad side effects from the chemo.

After about a month the level of cancerous cells in my blood stream started dropping so I was allowed to go home.  I was extremely weak and someone had to wheel my wheelchair right to my wife’s car door and help me get in.  Just for reference, I had backpacked at 9000′ ASL with a 40 pound backpack for 4-12 miles a day just a couple years earlier.

It was also time to look for a suitable stem cell donor for my BMT.  Fortunately my youngest sister Linda was a 100% match and was very anxious

Home Again, August 2019

Very worn out and easily tired.  The first week or so my day consisted of getting up, getting dressed, going to the first floor of the house and collapsing on the couch for a few hours, napping quite a bit of that time.  Taking a shower completely exhausted me and required a nap.  It was about a week before I finally ventured back into the basement to enjoy hobbies again.

Twice a week a nurse from Penn Home Infusion would come out to do a physical, draw blood, and change the dressing on the PICC line.

The plan was for a bone  marrow transplant (BMT) in early December 2019.  However, my lungs had a fungal infection which had to be brought under control, which would take many months.  A cardiologist, pulmonologist, dermatologist and an infectious disease doctor were all part of my medical team now.

By mid November it was clear that the BMT would have to be postponed while I continued to gain strength and fight the lung infection.  I was getting ongoing outpatient chemo but they were able to assign me to an oncologist in New Jersey so I could drive about 20 minuets to my chemo appointments each day.

The cancer went into remission so 2019 was looking like a good year.

Bone Marrow Transplant (BMT) – May/June 2020

My health continued to improve and my strength had returned, back to walking three or more miles every couple of days.  The cancer had returned so the oncology team was anxious to get me into another strong chemo and do the transplant.

At the end of May I went in and started the strong chemo.  Nothing unusual about it at all in terms of procedures, but since this completely killed my immune system (as opposed to previous chemos which mostly destroyed it), I had to move into a special sanitized room for a few hours while everything in my main room was sanitized.  Yes, everything, including all toiletries, clothes, books, electronics, food I had brought with me, etc.  After a few hours I moved back into my crazy-clean room.

About the same time, my stem cell donor, my sister Linda, headed out to a facility in California where they harvested the stem cells from her blood.  Unfortunately this was the start of the really scary phase of COVID so on the drive out, they found many restaurants and even gas station restrooms were closed.  She and a friend made the drive out and Linda said it was an easy procedure to collect the cells, then they departed to head back to Arizona.

After the stem cells were collected, they were immediately frozen and put on a plane to Philadelphia.  On June 6 a team of four doctors descended on my hospital room to thaw the cells and immediately pump them into my PICC line.  The whole thing lasted maynb an hour.

New procedures until further notice: my room was pressurized and the door was kept closed.  While I could go out to exercise or get food from the pantry, my day was spent in my room.  When leaving the room, I had to put on a gown, gloves, and a face mask.  Anyone coming into the room had to do the same thing.  The gowns were used once, then placed in a laundry basket outside my door.  Everyone, even the people delivering meals, had to wear the protective gear.

Since this was during the peak of COVID, I could have no visitors, even family.  My wife came over a couple times to exchange dirty/clean laundry, drop off magazines, etc, but the hand-off was done by the nurses at the front desk.  My wife dropped me off in front of the hospital in late May (she wasn’t allowed in) and picked me up when I went home in late June.  Our cat, one of my best friends, died very unexpectedly about a week into the stay, making it even more unpleasant.

My wife sent in a lot of frozen food; my room had a freezer, fridge. and microwave.  A lot of food tasted pretty bad after the chemo so stuff I normally liked tasted bad.  Water tasted really unpleasant but she provided some flavoring stuff which made it tolerable.

Every day the doctors would watch my ANC; it had to reach  a certain level before I could be released.  About three weeks after the BMT I was finally ready to leave.

Going home was an adventure.  I was pretty weak so they had someone come with a wheelchair and get my to my wife’s car.  However, I was wearing a mask and latex gloves.  On the way home we went directly home, as getting a diet soda from a fast food place was not allowed.  It was great being home again, except for not having our cat Toby to play with.

Life at Home

Returning home was great, as being in the hospital for four weeks without visitors and mostly confined to my room was really tiring.  Once home, there were new restrictions as I basically had almost no immune system no longer had of the childhood/adult vaccinations.  Some of the restrictions at home:

No food/drink unless it came from our kitchen.  Drinks needed to be sealed when I opened them.

Any food had to be heated to at least 160 degrees to be sure bacteria was killed.  Leftovers had to be frozen while the food was still quite warm.  I could reheat leftovers once and had to be measured to be sure they were at least 160 degrees.

I was not supposed to be in the kitchen; my wife and kids prepared meals.

No fruits or vegetables unless they were cooked.

No use of common towels.  We still use paper towels by all sinks in the house.

Bedding had to be washed at least once a week.

Carpets needed to be steam cleaned at least once a week.

Could not wear the same clothes once I took them off.