karenulijohn

My beloved Harvey passed away this evening at 6:05 PM.  It was peaceful and only I was here to hold his hand.  It was quite sudden and quite quick.  We had a wonderful day today, talking and laughing more than we had done in many days.  I think I have a long journey ahead.  Thank you for your prayers.

Lovingly,

Karen

Harvey was admitted to the hospital today, Sunday, May 27th at 12:30 AM.   

After a week in Pittsburgh, PA visiting my ailing brother and his family, Dawn and Dirk drove me back to Lincoln Saturday morning.  Harvey was so happy to see us, and we had a lovely visit, recounting tales of our visit back east.  His caretaker through the week, Diane, was still there when we arrived and said that she had had a very difficult time getting him to wake up in the morning.  That sleepiness persisted throughout most of the day, and he seemed to be confused and was not able to understand simple commands.  I kept telling him to eat his soup, and he would just smile and close his eyes.  As the day wore on, I noticed that he had begun shaking and I asked him if he was cold.  He replied that he was, so I wrapped him up in an afghan.  It didn’t seem to help, and I noticed that sometimes he seemed almost rigid.  He felt a little warm to the touch.  I finally called 911 when I couldn’t get him to respond to me at all.  

After myriad tests, blood draws, EKG, and chest XRay, and a core body temperature of 105 degrees F, they began treating him with strong antibiotics and fluids.  In addition, he had gone into Atrial Fibrillation again and the drugs that they gave him to bring down his heart rate also served to lower his blood pressure to dangerously low levels.  Dr. Kovacik, the ER doctor, was very kind and persistent in trying different drugs to try to achieve, what appears to be the unachievable.  After several hours, he came in and asked if anyone had talked to us about hospice.  He could see from the look on our faces that the answer was “No,” although we had discussed palliative care.  The chest Xray revealed that Harvey’s cancer has spread to his lungs now, and further, the blood draws showed that he is septic.  

Dr. Kovacik was sorry to be the bearer of bad news, but he said that Harvey’s condition was grave. He went so far as to tell us that there was a possibility that he could take a turn for the worse and pass during the night.  My decision to stay overnight at the hospital had already been made at that point, but who knew that I would be spending the night sitting in a hard chair in the ER.  No beds are available until after 7:00 AM.  I just can’t leave him! 

Indeed, what can I say?  On the one hand, we are dealing with yet another round of daily medications, uncertainty, good days and bad days.  Yet, on the other hand, we are on the receiving end of so much love and kindness, and so many prayers, cards and gifts.  We are humbled by the outpouring of offers of help.  Thank you to everyone who has expressed an interest in what we are facing.

Tuesday was a particularly bad day for Harvey.  He had absolutely no energy, and could barely get from the bed to the chair.  He told me he didn’t have the strength to take a shower.  He had no appetite, and any thoughts of food made him uncomfortable and frustrated.  I was certain that his problem was directly related to his not eating or drinking.  When I finally managed to get him to eat a little bit and drink some water, he began to recover and even gained back some appetite.  At one point, I actually asked him “Are you dying?” He responded that he didn’t know because he has never died before!  I’m grateful that he still has his sense of humor.

We have been waiting for nearly two weeks for the Chemotherapy drug to arrive, and it finally came today.  He will begin to take 3 tablets in the morning, and 3 in the evening for the next two weeks, then have one week off.  He will have to take an anti-nausea pill one hour before the chemo.  Given that he sleeps most of the day, he will have to begin popping pills at 7:00 A.M.  The 20% copay for this drug is considerable and will necessitate our limiting the sumptuous meals that I have been creating to entice him to eat.  LOL!

We have hired a very nice woman who is a resident here in Lincoln Hills, to come in and help Harvey two or three times a day.  She was recommended through Neighbors InDeed, a volunteer organization in the Lincoln Hills community that offers help to residents from programming the sprinkler system to changing the smoke detectors, and everything in between.  Her main role is to make sure that Harvey eats a balanced meal several times a day.  We liked her immediately we met her, and I am convinced that she will be able to handle all of the excuses of why he doesn’t want to eat.   You may recall from a previous post that Harvey had acquired the nickname “ROF” when he visited Starbucks.  Well, ROF (Recalcitrant Old Fart) has returned. I think he has met his match!

Please feel free to call Harvey or arrange to come and visit with him.  Some people have offered to take him to lunch or dinner.  Because he is eating so little, I think he will be most comfortable visiting here at home.

Maybe I was being naive, but I never thought I would be posting to this blog ever again after my last post a year and a half ago.  But, I should never say “never!”  Recently, Harvey has been having back pain that was progressively getting worse and worse.  He consulted our Primary Care Physician who, after an X-Ray, concluded that his problem was arthritis, and he should just learn to live with it.  Fortunately, both Harvey and I knew in our bones that there was something terribly wrong.  He has continued to lose weight, his appetite is non-existent, his electrolytes are not balanced, particularly sodium and chloride, and he has absolutely no energy.

About three weeks ago, he had a follow up appointment with Dr. Suhag, his oncologist, who ordered an MRI of Harvey’s spine.  The results of that showed something that persuaded him to order a CT scan.  The scan revealed two thickened areas in Harvey’s liver plus swollen lymph nodes.  The Dr. was pretty sure it was cancer, but he needed to know whether it was a recurrence of melanoma or esophageal cancer.  Last week, Harvey had a liver biopsy, the results of which we heard today.  Esophageal cancer has found its way to his liver and lymph nodes.

We feel very lucky to have Dr. Suhag as Harvey’s oncologist.  He laid out the facts and possible treatments, outcome expectations and time lines.  He answered all of our questions and assured us that he would do everything necessary to take us through this challenge.   The treatment options are: 1) Chemotherapy by infusion, 2) Chemotherapy by mouth, 3) Targeted therapy based on genetic mutation, 4) Surgery which is not indicated at this time, 5) No treatment.  Because of Harvey’s previous experience of cancer treatments, he has a particular aversion to ports and pic lines and needles and infusion centers.  So, he has opted for Option 2, chemo by mouth.  While it is not as effective as the infusion method, the trade off is fewer side effects.  The goal is to shrink the tumors, relieve his pain, and allow him to have reasonably good quality of life.

In the meantime, the cells from the biopsy have been sent to Foundation I which is an organization that searches for the mutated genes, and studies why they are growing.  There is a 1 in 5 chance that Harvey’s cell mutation will match one that has already been identified, and a smart drug therapy has been discovered.  The results of this search will be returned sometime next week.  Targeted therapy is not a cure, but it has been shown to produce miraculous results and remissions.

Please keep Harvey in your thoughts and prayers.