Hospice

We got the results of the MRI and CT scans from Boston.  The MRI determined that there is no melanoma in the brain, it was definitely a stroke.  The CT scan showed that the 3 tumors in the liver had shrunk considerably.  He had been down to 1 cancer pill a day, of his own choice.  He was so sick of feeling so terrible that he stopped taking it altogether.  By Wednesday the 20th, he could barely get out of bed but didn't want to go to the ER.  I convinced him to let me call the doctor to see if he could see him.  My sister helped me load him in the back of the Jeep so I could drive him there and help me put him in a wheel chair to get to the Dr.'s office.  He was dehydrated and his vital signs were not so good so they wheeled him right to the ER who in turn admitted him into the hospital.  They did another CT scan on Friday the 22nd.  The tumors multiplied and grew so much that the smallest tumor was larger than the largest one the prior week.  The liver is enlarged and pushing on the stomach which is distended since it can't drain.  They finally found a nausea medication that is working.  The oncologist said since he does not want chemo he suggest hospice.  I asked him for a time frame, he said his best guess is a month maybe less.  Don chose to stay at home so they brought him home by ambulance yesterday.  A home health aide comes in every day for an hour and a nurse will be coming in 3 times a week, more as needed.  They will also send a chaplin and a social worker for both of us.  A very dear friend, Joyce Casavant, is spending the week with me, her husband is bringing up their RV next Wednesday and staying indefinitely.  

He seems to be at peace.  It will be lots of work taking care of him but very much worth it.

First Dana Farber Appointment

On Wednesday we went to Dana Farber Cancer Institute in Boston.  I drove as far as Portsmouth, N.H. and his son met us there and drove us into Boston.  He came to the appointments with us which was wonderful, he got to see things first hand and it took some of the pressure off of me, not to mention Don's appreciation for having him there.

First we saw the neurologist.  We all liked him, it was especially good that Don liked him.  He ran a few tests on him and told him that the stroke had caused "left side neglect".  He explained how important it was that he not drive.  His peripheral vision is OK if there is something on the right OR on the left, but if there is something on both sides only the right side will register in his brain.  Don asked if he could compensate like a person who is blind in one eye and the doctor said that he could not since his eye does see it, it just does not register.  So if he were driving and there was a pedestrian, bicycle, car, whatever, coming on both sides, he would not be aware of the one on the left.  The Dr. also explained that if he drives anyway, has an accident with someone who is quick to sue, all they have to do is check his medical record and find that he should not be driving and we can lose everything we've got, even in a minor fender bender.  He needs to be tested by a company that does simulation driving testing and pass before he can drive.

Don then went for blood work followed with a visit to Dr. Hodi, the melanoma oncologist he has been working with for the 4 years prior to going to Moffitt Cancer Center.  Unfortunately he had not gotten the records from Moffitt yet, so he called Dr. Weber personally to get enough information to be able to talk about his condition.  He suggested that Don have an appointment with a tem of doctors who can tell him what clinical trials are out there that he would qualified for.  Don explained that Dr.Weber had suggested not trying anymore trials since they have to follow protocol and give the same dosage to everyone.  Don does not seem to be able to tolerate full dosage of anything so it would probably just make him sicker and put him in the hospital again.  The other option is chemo, but he definitely does not want that.

We went back to Boston for an MRI of the brain and a CT Scan.  The neurologist said he would call Don the first of the week to tell him the results.  He was not convinced that it was not melanoma that caused the stroke.  He said once the blood from the hemorrhage dissipates, sometimes they will find a melanoma lesion.   We see Dr, Hodi on the 26th when we get the results of the CT Scan and how the tumors have changed.  Don seems to be getting weaker every day, but he barely eats, he has gone from his regular weight of 215-220 to over 230 when he was on prednisone and now to 185.  The personality changes from the stroke are still there, every now and then I get a glimpse of the Don I know.