Feeling a bit nauseated first thing this morning, Dad started his day at 8:00am at the Moffit Cancer Center’s main campus with a psychological evaluation by Dr. Booth-Jones. Dad claims he “passed.” Dad described several of the activities he had to perform as a part of the evaluation…drawing shapes, selecting alternating colored circles, reading a list of words, repeating sentences read by the psychologist, etc. I actually think Dad found the testing to be interesting and amusing at the same time. I guess we can take heart that Dad is not that loony after all.
All joking aside, I have read that the patient’s mental state before, during and after can impact the outcome of the stem cell transplant. Anxiety and depression have considerable consequences in the months and even years following the transplant. It is best to recognize distress and depression early on through a screening evaluation so that proper psychosocial therapy and pharmacologic medication may be used to help the patient deal with stress before, during and after transplantation. I am appreciative of Dad’s evaluation because Mom and I do not believe Dad would ever admit to being sad or depressed. Dad is constantly trying to remain mentally strong so that Mom won’t worry.
A warm & friendly living will.
At 10:00am, Mom, Dad and I met with Penny, social worker assigned to Dad. We had not met Penny at last week’s meeting with a social worker because Penny was out of the office for the holidays. Penny provided Dad copies of his advance directives (living will and health care surrogate/agent) that he has on file with Moffitt today. I inquired about Five Wishes. I view Five Wishes as a “warm and friendly” living will. Five Wishes also includes the health care agent. Penny said that Dad may use Five Wishes to replace his current one. She also provided another alternative from Project Grace. Penny told us that we could obtain copies of Five Wishes at the Social Worker office rather than order them online from the Five Wishes website. After taking the time to review both, I am recommending that Dad use Five Wishes. I even told Husband that we should update our own advance directives with Five Wishes. I was made aware of Five Wishes through a hospice discussion on the CTCL listserv. (If you haven’t already subscribed to the CTCL listserv and are dealing with CTCL, I highly encourage you to join. It is an online discussion forum with over 1,300 members.)
While riding in the car leaving Moffitt, Dad said we should do some funeral planning. Our family has never been one to avoid or even shy away from end-of-life topics. It probably has a bit to do with personalities. Mom, Dad and I are all type A and appreciate a solid plan…whether is it going on vacation or how one wants to be buried. We LOVE a plan. We keep our conversations about end-of-life light hearted. I got a good giggle when Dad asked me “what do you want at my funeral?” I laughed and reminded him that it is his funeral and that it should be exactly as he wants. Dad then told me that it didn’t matter to him since he “wouldn’t be there” anyway, and it should be what Mom and I want. Classic Dad…ever so selfless.
At 3:30pm, we were at MIP (Moffit Cancer Center at International Plaza). Dad had another dose of radiation to treat the same spots. At 4:30pm, we met with Dr. Montejo, radiation oncology. Dr. Montejo asked how Dad was feeling, and Dad told him about today’s nausea. Dr. Montejo indicated that it could be from the radiation Dad is receiving on his lower spine. That spot is being radiated differently and is “shooting” at Dad from the back and the front. Radiating the lower spine can impact your colon, which may cause nausea. Dr. Montejo had a good look at Dad’s very large tumor on the left/front side of his head..nearly the size of an egg. Dr. Montejo was amazed at how that tumor wasn’t visible when Dad did the radiation simulation two weeks ago. That tumor is open and showing signs of necrosis (visibly black). The good news is that Dr. Montejo indicated that is not infected. Mom was very relieved. Mom takes it personally to be the perfect caregiver by cleaning the open, weeping tumors every evening after Dad showers. She then applies bandages to cover the opens areas. She pads the most sensitive ones hoping the padding will allow Dad to sleep better when he rests his head on his pillow.
Dad doesn’t like to take medication. His whole life, prior to cancer, he would tough it out. He must have thought medication is for wimps. I find I have to tell his doctors that he needs to be encouraged to take pain medication when in pain. Why suffer so much? I had that conversation today with Dr. Montejo. The egg sized tumor is painful. Dr. Montejo convinced Dad to keep a small bottle of OxyContin in his “back pocket” and to take it, if needed. Dr. Montejo feared that Dad might find himself without the ability to get prescription pain medication over the weekend.
Tomorrow is Dad’s last day to do the spot radiation. On Monday, Dad starts eight days of total skin electron therapy (TSET). Dad is not showing any signs of disease on his hands nor feet. This is exciting in that Dad will get to have his hands and feet shielded during the TSET. When Dad did TSET this past summer, I recall Dad having the largest blisters I had ever seen on the tops of his feet. Dad does have a few spots close to his eyes and will have to wear internal eye shields to protect his eyes while radiating around his eyes. If the “egg” and other numerous tumors on his head have not been reduced after those 8 treatments, Dad may receive scalp radiation afterwards.
Tomorrow, Dad will be seen by Dr. Ayala, transplant. Dr. Montejo warned Dad that Dr. Ayala would not like the egg-sized tumor. Dr. Ayala wants Dad to be practically tumor free with no Sézary in his blood before he receives the transplant. I joked with Dad and said that Mom and I could try to cover up the egg with a little concealer makeup…perhaps Dr. Ayala won’t notice.
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