It's been almost six months since my last update and once again, a lot has happened. We did sell our house in Florida and moved to a wonderful rural community in Tennessee. The weekend after moving we had a wonderful family & friends reunion at our youngest daughter's house in Georgia.
What a wonderful time....five of our six kids were there along with ten of our thirteen grandchildren. Mike's brother and sister both made it as well as some close friends. Mike's brother officiated over our wedding vow renewal and our children all witnessed the marriage certificate. Needless to say, there weren't many dry eyes in the house.
During all this, Mike's condition continued to grow worse. The tumor continued to grow and started to seep all the time which meant we needed to keep it covered. His lymphedema got much worse, making it difficult for him to wear his glasses, causing vision problems and making reading very frustrating. The fatigue continued to grow.
We made an appointment with Dr. Barbara Murphy at Vanderbilt Medical Center in Nashville. She was marvelous, spending a lot of time with us explaining Mike's treatment options and answering our questions. We already knew that the Taxol was no longer working. We found out that in terminal cases such as Mike's, each new chemotherapy drug, if at all effective, is effective for shorter periods of time. She recommended trying one more time, for whatever time that might buy us. She also prescribed steroids for the lymphedema. We were extremely impressed with her knowledge and compassion. Since she specialized in only Head/Neck Cancer, we felt we had one of the best doctor visits in quite some time.
Her staff found us a local oncologist to administer the newest chemo regime and take over Mike's care. Once again, we were thrilled with the facility and staff. Our new oncologist was honest, open and caring....he opted to use 5FU and Carboplatin. He scheduled Mike to get a chemo port installed. This was necessary since the new drug would require Mike to wear a portable infusion pump for four days at a time.
We were already seeing a positive result from the addition of the steroids. Mike's lymphedema was greatly reduced, the seeping had stopped and he had even been able to cut back on the dosage. A great side effect was a decrease in his fatigue level and he happily worked on getting the house set up and organized. He even managed to get out for one more motorcycle ride - his first since we moved to Tennessee.
But our joy was short-lived. By the second week of November Mike noticed his fatigue returning as well as muscle spasms in his hands and arms. The spasms continued to grow worse and his muscle weakness increased. One morning he woke and was extremely confused and disoriented. Fortunately we already had an appointment scheduled that day with the oncologist. They suspected a low magnesium level and drew blood through the chemo port. We got a call the next day - all levels were fine. We were puzzled, especially as his symptoms increased. A strange rash that had appeared the week before appeared to be spreading but was concentrated only in the mid-trunk area. We suspected shingles even though there appeared to be no nerve pain - the Neurontin may have kept that at bay.
The muscle spasms and pain grew to the point that we bought Mike a walker. On November 20th, the day we were to have left for a week in San Francisco, we hit the ER. Something was definitely wrong. They ordered an IV, thinking that Mike might have been dehydrated. More blood work was drawn first - both utilizing the chemo port. Looking back, we should have wondered why the port was suddenly more sensitive than it had been a week earlier.
The blood work once again was all within normal ranges....even his blood counts. But since he was so definitely in severe pain, they opted to admit him - at least for overnight. They gave him morphine for the pain and when he finally slept, I made the 30 mile trip to bring him back some personal things.
I could go into great detail here but will shorten the story. It was finally discovered that he had a bad infection in his chemo port - for whatever reason it hadn't shown any signs of infection until after the IV had been in for 24 hours. Due to the steroids and chemo, his blood counts were in normal ranges. They started antibiotics....the family started arriving from across the country. Monday was terrible...we didn't think he would make it through the night. His body temperature and vital signs slowed way down. But by morning, they were all back to normal ranges. Unfortunately, Mike never regained consciousness.
The family stayed through Thanksgiving, slowly leaving over the following weekend. In compliance with Mike's written and spoken wishes, we extended no extraordinary measures. Food, fluids and all meds except pain were stopped. We kept him peaceful and pain free, we allowed him to listen to us all laugh and talk about the good times. We all said our good-byes. At 11:22 am on November 30th, Mike passed away. Knowing he was finally out of pain, I wept...not for him but for me. He was my best friend, the love of my life, my everything and he will be greatly missed. Not just by me but by everyone whose life he touched.
He fought hard for almost 3 ½ years, living every day to its fullest, savoring every moment. If only one person can be helped by this website in their battle, then he will consider it worth it. Thank you all for letting us share our journey with you....