Jim was gone and I felt like someone had shot a hole through my life.  I knew about the 5 stages of grief; denial, anger, bargaining, depression and acceptance.  That’s not how I felt at all.  I must have gone through those stages during the last year while I was expecting his death.  What I felt now was an immense sense of guilt.  And emptiness.  I had failed in finding and getting Jim into a clinical trial that might have saved his live and I had not honored his last wish to keep him alive at all costs.  Logically, I knew that I hadn’t had much control over that possibility, but this little voice in my head kept saying “he’s so disappointed in you.”  It didn’t make sense to anyone else but it made sense to me; I had failed.

Because I had spent every moment taking care of Jim, I really had nothing to do now.  That’s not really true, I had to plenty to do learning how to take over Jim’s responsibilities!  I didn’t even know which bank held our mortgage.  So there was that, but I really felt lost, like my life no longer had a direction, a compass.  It’s been 4 years now and this is my little bit of advice:

Realize that recovery from a loss will take time

Appreciate every baby step that you accomplish.  I found it helpful to find something to be grateful for each day.

Take care of yourself

This is the last thing I felt like doing and I had to force myself.  As a matter of fact, I probably would have starved if I hadn’t had a wonderful neighbor watching out for me.  So force yourself to sleep, exercise (at least get outside and walk a little) and eat.

Learn something new

This is what helped me the most.  I started to turn my basement into a finished room.  It was the next thing on the list my husband and I had intended to do, so I just decided to learn how to do it.  And I did!  I also joined a hand bell choir.  In addition to learning something, it made me actually leave the house.  I bought a bicycle which I am still afraid to ride.  I’ll get to it!  I also wanted to write this blog, but it took me 4 years to get to it.  All of these things took me way out of my comfort zone and kept my brain distracted somewhat.  Speaking of that…

Make a list every day

The thoughts in my head were so jumbled that I could never have gotten through a day without a list.  First thing everyday was make the bed.  (I really loved the “Make your bed” speech by Admiral William McRaven.)  I had so many extra things to do now including putting accounts in my name and cancelling others, etc. that it would have been extremely easy to forget what I was doing. Or what year it was!

Do something frivolous that makes you happy

I got eye lash extensions!  Talk about frivolous!  I also revamped my sad wardrobe.  Both of those things still make me smile.  Smiling keeps the negative thoughts at bay.

These are a few of the things that worked for me

Everyone is different.  Hopefully something I have written will help someone else.  Please let me know.

 

                                Grandpa’s shirts that I made into pillows for my grandchildren

 

 

 

 

 

I spent the last year of Jim’s life searching the internet for a clinical trial to save his life.  It was 2015 and he had been a cancer patient for almost 20 years.  He had taken early retirement and was now running up and down the basketball court refereeing school basketball games.  I don’t know how he did it.  

We had heard that there was a new cancer immunotherapy utilizing T-cells in clinical trial. This gave us a glimmer of hope.  I had discovered by then that it was difficult to be accepted into a clinical trial; so many desperate patients and so few available slots.  You almost had to know someone.  As it happens, Jim’s doctor did know someone, the doctor who was running the CAR T-cell therapy clinical trial at Memorial Sloane Kettering Hospital in New York.  Mass General did not offer this trial back then, but the therapy is now offered right here in Boston.  Good article on the therapy here:

https://www.massgeneral.org/cancer-center/clinical-trials-and-research/immunotherapy/car-t-cell-therapies#:~:text=The%20Mass%20General%20Cancer%20Center,with%20lymphoma%2C%20Yescarta%20and%20Kymriah.

Jim was seen at MSK in October of 2015.  Unfortunately, he was too sick by then to receive the therapy.  I remember the doctor’s words “You have a good 6 weeks or so of life left.  I don’t want to take that away from you.”  Jim, on the other hand, completely ignored those words and went home determined to build himself up so that he could go back to New York in January and take part in the trial.  

One of the most difficult things for me and the rest of the family was that Jim never accepted that he was dying.  As far as he was concerned, he was going to beat the cancer. This was his way of coping.  He never lost hope.  So we supported him in his fight.  We raised funds for the Leukemia & Lymphoma Society https://www.lls.org/ (another great resource), we printed tee shirts and we never used the word “hospice.”  He died in January of 2016.  His last words to me were “I don’t know why you are upset, I am going to beat this.“

 

 

A word about clinical trials…  be prepared to do the research yourself!  I discovered that doctors cannot do this work as it is very time consuming.  Unless the clinical trial is being run at his or her hospital, he probably will not know about it.  I used the searchable registry http://clinicaltrials.gov.  It is wonderful and up to date.  When you find a good fit, contact the trial team directly.  Fast.  Do not worry about “bothering” them.  This is a life you are trying to save!  Of course, discuss it with your doctor, but don’t expect him to do the work for you.  

 

P.S.  I have no medical qualifications, but feel free to contact me if you need help with your journey.

 

 

The bone marrow transplant had failed.  No one had actually said that.  It was hinted that even though Jim’s tumors were reappearing, the BMT could be working.  In any case, chemotherapy was started, first CVP, then CVP-R.  This drug combination worked extremely well and Jim continued his normal, everyday life; racquetball, basketball, work every day.  On the days of his scheduled outpatient treatment, he went directly from Mass General to his job in Boston.  He suffered very few side effects.  No one even knew he had cancer.  He was determined to beat it.

At some point, the CVP combo started to work less well.  His tumors weren’t fully going away between treatments.  As they were subcutaneous, they were visible.  Depressing.  Luckily, at this time a number of new targeted therapies became available in clinical trials.  One at a time, he was able to qualify for many of them:

Velcade

Romidepsin

Ibrutinib

Zydelig

I think there were more, but it’s been a few years now and I don’t remember them all.  This cancer was smart.  The therapies all failed.  How about a second BMT, they asked?  UGH.  But OK, it was really the only choice.  We were told that the chances of success were real, but small.  

This would be a “mini transplant”, meaning that the pre-transplant chemo would be less harsh and less harmful to Jim’s body.  This procedure didn’t work either.  BUT during these years of treatment, our other two children had gotten married and given us 4 grandchildren.  Jim was even more positive that he was going to beat the cancer.  These kids were his reason to live.                                             

Looking back, it seems now that I always knew that I would someday become a widow.  At least since the mid 1990’s when my husband Jim, a Vietnam veteran, was diagnosed with Non-Hodgkin lymphoma.  We had 3 children; 2 sons, 24 and 21, and a daughter, 12.  The 24 year old son was about to be married.  Sitting in the oncologist’s office with a calendar, we tried to figure out the best time to schedule the life saving bone marrow transplant (from stem cells) so that it wouldn’t interfere with the wedding.  The doctor reacted negatively, to say the least.  How could we put a “social engagement” ahead of Jim’s life??  I guess at that point we really weren’t taking it seriously enough.  In any case, the wedding went on and so did the BMT.  After 4 weeks or so Jim came home, looking like death, to be nursed by me and kept in isolation.  There is a good article by the American Cancer Society about transplants here:  

https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/stem-cell-transplant/types-of-transplants.html

P.S.  I have been a widow for 4 years but a blogger for only 4 months.  If you like this post, please pin me.  Or leave a comment!  I’m a newbie, I need help.