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11/6/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Written by Deb Brage, Nov. 3, 2016
As so many of you know, Bob was first diagnosed with Stage III Metastatic Melanoma about one year ago. He underwent two separate surgeries in November of 2015 to remove a mass on his left flank as well as left axillary and left inguinal lymph nodes. He tolerated the surgeries well and in Bob fashion kept right on working at his shop --even with the drain tubes and the discomforts of surgery. He loves accommodating his clients needs and staying in touch with those treasured relationships. After four weeks of “taking it easy” Bob was back on the ice playing hockey with his friends. He and I were back at the gym two days a week building strength, and of course he was working his regular schedule at the shop. We were just living; enjoying time with each other, family, and friends.
In January Bob started a treatment plan of an immunotherapy drug: Ipilimumab. He received four doses of the drug ending in late April. In early July, a CT scan revealed that Bob had four new nodules consistent with metastatic melanoma. After a biopsy confirmed this to be true, Bob was referred to the melanoma experts at the Mayo Clinic in Rochester.
He started a new immunotherapy drug: Keytruda (or Pembrolizumab). Bob’s cancer was categorized as Stage IV. After one treatment of the drug, the nodules became larger and a new one was found. He continued the cycles of treatment and tolerated them fairly well. Some discomfort and fatigue were apparent, but nothing stopped him from doing the things he loves: playing guitar, riding dirtbike, attending music events, eating delicious food, spending time outdoors, tinkering in his garage, and just living life.
It wasn’t until mid September that Bob was becoming increasingly more fatigued and started experiencing much more discomfort and pain as the tumors became larger. He began experiencing pain that seemed to travel around his body. Sometimes he felt mouth pain, sometimes back pain, and very often pain from the pressure of the growing tumors on his chest wall and in his armpit. The doctors continued to be encouraged that we were on the right path. As the growth of the tumors continued we were told that one of two things could be happening: either the medicine was doing its job and it was tickling Bob’s T Cells and they were infiltrating the tumors and working to kill the cancer, or that the medicine was not working and the cancer was growing. As always, Bob continued to stay positive and hopeful. We let the doctors know that Bob was experiencing increased back pain. They wanted to give the medicine at least four cycles before they did a scan to really see what was happening.
Bob had a scan on Tuesday, October 25. On Wednesday, October 26 the doctor revealed that the cancer had grown and spread significantly. Not only had the original tumor sites become significantly larger, but they found several bony metastases in his spine, one in his left shoulder blade, and one in his right rib. The scan also revealed two compression fractures in the T3 and T9 vertebrae. We discussed some other concerns Bob was experiencing, including slurred speech and difficulty using his tongue to help with chewing food. The doctor was concerned and ordered an MRI of Bob’s brain as well as an MRI of his spine to pinpoint the damage and locations of the cancer more accurately. The two MRIs were scheduled immediately. One was Wednesday evening and the next was early Thursday morning. The MRIs were quite grueling and Bob was very uncomfortable and exhausted. We came home on Thursday at about 11:00 AM and fell into bed exhausted and scared.
On the upside, Bob received a call at about 1:00 PM stating that there was no evidence of cancer in his brain! We cried tears of joy at that news as we were feeling quite discouraged from all we had been learning.
On Friday, October 28 we traveled to the Mayo Clinic in Rochester again and met with the radiation oncologists to discuss a treatment option to protect Bob’s spinal cord; there were two places where the cancer/bulging vertebra were dangerously close to his spinal cord. Five days of radiation were scheduled, beginning on Monday, October 31.
On Monday, October 31 we also had an extensive visit with the palliative care team at Mayo in Rochester. They spent three and half hours assessing and figuring out how best to help Bob deal with the pain, exhaustion, and lack of appetite related to the cancer as well as the subsequent radiation treatments. As of today, Bob has had four of the five radiation treatments. He has been traveling back and forth to the Rochester clinic each day. We are so very thankful to all of the family members and friends who have so graciously supported us these past two weeks by helping out at home, helping take care of our pup, Schatzie, providing food, and helping with the driving on our daily jaunts to Rochester. I also have to give a shout out to my coworkers who have so lovingly given their time and talents to allow me to be with Bob during this difficult time. So many wonderful and loving people in our lives has been a godsend and we are so very thankful to all!
Bob is very, very tired and sleeps a lot. His appetite is poor as things just don’t taste good to him right now. Doing simple life necessities wears him out. We are hopeful that the radiation will give him some relief soon, and eventually gain more energy along with his appetite.
We are so thankful for all of the prayers and positive thoughts that are coming our way. I will try to keep you all informed as we move forward.