Dec 29, 2019 Latest post:
Jun 11, 2020
Since moving to Naples in December 2018, one of our priorities was to get established with doctors. We found a great internist, who at times because of all his referrals, my thought was “this is a rip-off to Medicare”. Well, his referrals proved me wrong and discovered something we were not prepared for. After months of Tom having blood work through various doctors, getting urine tested, seeing a urologist and oncologist, it has been discovered he has Multiple Myeloma. He had a PET scan (3/19) and that came out showing NO bone lesions. He saw a kidney specialist (3/26) in Tampa. It has not been determined yet if the Multiple Myeloma is in a smoldering stage or active stage. A protocol has been laid out for us and it’s not if, it’s a matter of when the protocol will start. We have had a second opinion at Moffitt Cancer Center in Tampa with a doctor who specializes in Multiple Myeloma only, so we feel we are in good hands. The good news is that Tom has no symptoms.
In the meantime we are walking everyday and Tom’s legs feel better than ever. Rather than walking 10,000 steps per day, he is walking 15,000-18,000. We have had company and will continue to have company through April. We are both positive and living life to the fullest.
On April 30, 2019 Tom had an ultra sound of his kidneys which turned out to be normal size, therefore the Myeloma is not causing the high protein in his urine. He does have stage 3 kidney disease, which they will watch. So, no more high quantities of salt for this guy, who also has to limit his intake of animal protein.
Finally, May 17 arrives and we make our way up to Tampa once again to see Dr Shain at the Moffitt Cancer Center. We like Dr Shain (oncologist) because he is straight forward, yet has a bedside manner that makes one feel cared for and comfortable. Tom has active Myeloma, but they are delaying to start any protocol at this time. They will test him quarterly and watch for any changes. Dr Lipman, our local oncologist is in close contact with Dr Shane, who agrees whole heartedly.
After our August 2019 appointment at Moffitt Cancer Center, Dr Shane made the call for us to come back in 2 months rather than 3, due to some numbers changing. Tom has commented to me that he does not feel sick, but his body feels different. He continues to walk or bike every day and is golfing at least 2 times a week. Still no symptoms, although I think he tires more easily, and is sleeping longer, usually getting 7-8 hours a night. My theory is don’t worry til you have to worry, so life goes on and we continue to keep a busy schedule.
In November 2019 Tom was schedule for another bone biopsy and possible kidney biopsy. He met with Dr Lipman on Dec 2nd, only to find out the bone biopsy shows the Myeloma has gone from 10%+ to 50-60% in a matter of 10 months. Although he feels good and still has no symptoms, this is an indicator that says the kidney biopsy is no longer needed, but treatment is imminent. With a family cruise coming up, they scheduled Tom to start treatment beginning Dec 23rd. The protocol is to take Revlimed for three weeks then one week off. He will get shots of Velcaid on the Mondays and Thursdays while he is taking Revlimed. He will also take 5 pills of Dexamethasone the days he gets the shots. Then there are the other drugs to ward off side affects: XGina is a shot once a month for bone strengthening, Ondansetrom for nausea, Omeprizol is an antacid pill and Allopurinol which is a 90 day kidney cleanse, plus keep taking the daily baby aspirin, That’s quite a regiment for a rookie. Looks like this will be his (our) life for the next 6 months. We are considered to be on a lily pad. The results of this six month treatment will determine which lily pad we should jump to next and then the next. We both feel positive and are both hoping the side affects are not worse than the treatment. In the meantime, life in Naples is pretty damn good.
It is December 22, the night before Tom starts the pill regiment. I can tell Tom is not himself. He is overly sensitive and feeling vulnerable. We have a good conversation and he is concerned about our life being drastically interrupted. Between his vision and now the time consuming cancer, he feels he is a burden. OMG! We have been all over the world these last 10 years..planes, ships, motorcycles, personal yacht....visiting countries and sites that were beyond my wildest dreams. We are at a place here in Naples that we both feel so comfortable, in fact we call it our stay-cation, so if this is an interruption, it’s a pretty damn good one. Tom and I are very different from one another. When Tom worries, he can sulk a bit. When I get stressed I get anxious and uptight. My plate has been full with other things as well, like managing a rental, and taking care of all the details of closing on another coach home and getting it ready for rent. We have to be sensitive to one another’s needs because we are both affected by the big “C”. I am here for you babe, I am your driver, your schedule will be my schedule. We WILL get through this. Let’s not get ahead of ourselves and unnecessarily worry.