Life is too precious to waste

Jim has been sick for over a year now.  First it was just trying to get the proper shot in his hip. Still he seemed to be doing fairly well and was doing some iWork with his big loader, etc.  Then one day he wrenched his leg getting on the loader and within a few days he was having trouble walking. Soon he was resorting to using crutches as the pain had settled in both hips.  He had appointments with his oncologist and his orthopedic doctors the following month, but one night Jim felt he had better go to the ER.  They found his white cell count was high but they couldn't determine why he had the pain in his hips
They suggested we get an earlier appointment with his oncologist and orthopedic doctors.  We first saw the oncologist on a Monday, but he didn't feel his hip joint pain or the high white cell count indicated that his still dormant chronic lymphatic leukemia was kicking in.  We couldn't see the orthopedic doctor for another week.  We stayed overnight in Flagstaff with friends and the next morning Jim decided to go to the ER there as by this time he could barely walk and needed help getting in or out of bed and sitting up in bed.
  They decided to do an MRI to see if he had a herniated disk, but when they did the MRI, the radiologist found something in his kidney.  Further tests revealed it to be cancer about the size of a golf ball.  All interest in his hip pain ceased as his visit with his orthopedic dr. was on the following Monday and they pressed us to find a kidney surgeon.
  On Monday we met with the orthopedic dr. who ruled out shots in his hips but agreed there was inflammation there and put him on a steroid regimen.  He also felt it was a classic case of statin problems and took him off his statin meds. for cholesterol.  Within 24 hours of starting the steroids he was back to walking, and getting out of bed unassisted.
  We got an appointment with a kidney surgeon who told him basically, you are over 70, have diabetes, had a 5 bypass a few years ago and are borderline with leukemia.  He outlined the surgery he would normally do and then said I won't touch you, you most likely wouldn't survive.   BUT, there is a new procedure where they go in and freeze the kidney and it just breaks down and is flushed away.  The radiologist who had found the cancer was the dr. who froze it and within a few days it was gone.
  His white cell count which had gone from 30 to 80 during all this went back down to 30, so the oncologist felt things were good with the leukemia. He had planned to do a bone marrow test but with these reduced readings in his cll, he did't feel it was warranted at that time.
  But as the steroid regimen was completed, within a few days he was back to being unable to walk, etc.  A call to the orthopedic dr. resulted in his saying there was nothing he could do, Jim should see a rheumatoid dr.  Calls to r.doctors in AZ, and UT found only one taking new patients, in Kingman.  We sent them records of every test done so far about 2 weeks before the appointment.  In the mean time his primary dr. put him back on a steroid regimen and he was able to move about again.  When we saw the r.doctor we quickly realized she had not looked at anything we had sent, in talking with her she didn't feel there was much she could do but order another test done that hadn't been run yet.  and sent us on our way.
   The radiologist who had found the cancer called and said you don't have r.  you have a bone and joint problem, and suggested we see a bone and joint dr. for his hips.  By this time he had pain in his shoulder as well as his hips and legs.  We saw 2 bone and joint dr.s one for his hips and one for his shoulder.  He was given a shot in his shoulder at that time, (that was in September) and eventually he was given a shot in both hips in January.  He had at that point begun to have pain in both shoulders and the shot in his hips seemed to ease both.
  As we ventured into February though the pain was beginning again, he had little stamina and it was getting harder to get around.  He was seeing his local doctor and was going on low doses of steroids to get by.  He had also developed a pain in his chest and a very productive cough.  He was also taking  opioid pain pills to try to handle the chest and shoulder pain. This was causing him some constipation and the need to take other medications for that.
   About the end of February his local dr. who had seen him that day and run some blood work, told us to go to the ER and he had made arrangements to have Jim flown to Flagstaff hospital as he felt Jim might have blood clots in his lungs.  That his cll (white blood cell count) was back up and he had also contacted his oncologist.  His regular oncologist was out of town but his associate was going to come to the hospital and do a bone marrow test. We quickly got our things together and went to the ER, but the Doctor working that night said since he wasn't coughing up blood he didn't have blood clots in his lungs.  She did do blood work and talked with the oncologist and it was decided to send us home and for us to go to Flagstaff by car the next day and have the bone marrow test done in the office.
  We did this, and on going in to the office Jim remembered that all the visits with the oncologist were covered with his VA, but they would have to submit the paperwork for approval  So after a brief meeting with the Dr. we went home.  The Dr had asked if Jim wanted to have the test done in the office or the hospital under anesthesia as it could be painful and Jim oped for the office.
   A week later he got a call that the test had been approved, but Jim had decided he would prefer the hospital and so it all had to be resubmitted so the wait continued for that.
   We had bought a small school bus to make into an RV for going to tractor shows.  By this time we had missed several, but with the help of a friend, he put in one big effort to get it all together and get to the March show in Apache Junction.  It took him all day to do the last little bit of wiring that should have only taken a few minutes.  But finally we were on our way.  At Apache Junction another friend had rented Jim a golf cart to get around in and he made short trips from the RV to the different areas and would return to the RV and go back to bed.  He was barely able to climb in and out of the RV and had to use a small step stool to make the first step.
  On Sunday morning we packed up and returned home.  He drove as far as Munds Park and I drove on home.  Monday and Tuesday he was barely able to get out of bed on his own and only stayed up for short periods of time and went back to bed.  He had bought a welder on public surplus in Cedar City that needed to be picked up so a girlfriend and I went and picked it up and were gone all day.  When I got home he told me he had basically stayed in bed all day.  He sat up for some supper and then headed back to bed but about 30 min. later asked me to take him to the ER.
   He had lost about 25 pounds over the summer and a lot of the swelling had gone down in his ankles and his fingers were looking bony and he had admired how he could reach his fingers around his wrist.
   As we entered the hospital it was noted his ankles were swollen, the oxygen meter showed his oxygen in the 80's and his pulse erratic, bouncing from the 80's to 150's.  He was in afib.  The PA on call that evening had an EKG. run and it was found he had had a heart attack, that was causing the chest pain and congestion.  Blood work compared to his last reading the 2 weeks before, found he had lost ¼ of his blood, but he had had no bleeding in his bowels or kidneys.  They packed him up and he had a helicopter ride to Dixie hospital in St. George.
   Over the next 12 days he had a Cat scan, bone marrow test, spinal tap, over 6 units of blood and 6 units of platelets poured into him as if into a black hole. multiple blood tests, medicines, etc.  He began as fairly cognizant and talkative, yet always fighting the cough.  He knew his name, and birthdate, my name and that I was his wife.  He didn't know the year, (1968?) nor where he was or the type of building, tho when asked why he was in a hospital he would answer, I had a heart attack.
   While they were trying to encourage him to become more mobile, he was getting less so. He had the hospital Dr.s primary, oncology and cardiologist, respiratory and physical therapy all working on him.  After they had taken the bone marrow the oncologist asked about his history over the past year. When I mentioned all the steroid treatment she quickly called the person reading the test to look for one other thing.  When I mentioned he was not always clear headed and that had been going on for some time, she ordered the spinal tap as there is a type of leukemia that attacks the brain. Her other call was in regard to another type of leukemia that is often undetected as it is masked by steroids.
   By Friday he had been able to be off the hard pain medication.  Saturday night he began to complain of sever back pain and the nurse gave him a low morphine dose.  But when he tried to give him is night pills Jim became unresponsive.  They called stat and the night Dr. felt he was having a reaction to the morphine and gave him something to contradict it.  The respiratory dr. put him on a stronger bypap at his strongest level as they found Jim was breathing fast and shallow.
   At this point he would barely respond to anything and only by squeezing a hand or moving his toes or nodding his head. And even then his responses weren't always correct.
  A nurse from ICU talked to me about moving him there as he would get better attention and asked about a respirator.  When it was determined that he would probably never get off of it, I said no as Jim and I had discussed that and it was not what either of us wanted for ourselves.  After his move to ICU I noticed they had put the Bp cuff on his upper left arm.  They had blown a vein there earlier and it had been too painful for him to have them use the cuff there.  As I was starting to say something, the cuff started, and I watched Jim's face for any kind of reaction to it.  There was nothing.  i asked if he was on pain meds, and they said no.  At this point it was like he was asleep, he would react to his name and then be gone again.  By now they had put a catheter in but he was taking in fluids at a faster rate then he was losing them and still his blood levels were low. The oncologist came in with good news and bad.  The good was he didn't have leukemia in his brain.  The bad was he did have acute leukemia everywhere else that was the cause of all the joint pain and had been masked by the steroids.  Treatment was more steroids this time increasing until he got to a better physical level and then they would begin chemo.  They began the steroid treatment right then.
  His once thin fingers were becoming balloons he seemed totally unaware.
  The next morning an oncologist came in and said Jim's lungs were filling up with fluid and said the only treatment left was the respirator and no, he would most likely not come off of it.  I said no.  He said then it will be a few days,  I said I also don't want the bypap machine, is it really helping?  He said no, and that it would then only be a few hours.  The nurse gave him a shot to relax him and took off the mask and turned off the monitors in the room and left us alone.  I got as close to him as I could and began talking to him as if we were at his beloved Kitson Resouvour his grandfather had dug, where he loved to go fishing.  I talked as if we were fishing, describing it all in detail.  As I began to see his breathing was slowing down I told him, I think I see you sons and your mother, maybe they would like to fish too.  He took his last peaceful breath and was gone.
   After the nurse came in and prepared his body for the mortuary.  He asked me if I was doing ok.  Yes, but not, I said, then I asked him... Are you doing ok?  This isn't what you train for, you train to heal.  He said yes, but I was so afraid you wouldn't stay strong and would ask us to do more and it wouldn't have done any good, just prolonged the state he was in.
   I'm somehow at peace with all this,, at a friend's suggestion I've put up a screensaver of photos of Jim and places and things we did together, his equipment, etc. and I find that comforting.  I miss him terribly but I know he wouldn't have wanted to continue to live like this last year had been or with even less mobility and more pain.  I truly feel he is surrounded with his boys, his mother and family and friends who have gone before him, and that some day we will be together again.
   His moto was always 'don't tell me you can't do something.  tell me you don't want to, but you can do anything you if you at least try.'  My father always told me that too, and I've tried to pass this on to my son.  Life is too precious to waste.