by Jena | Jan 29, 2016 | Advanced Funeral Planning, Radiation Therapy |
Dad completed his second of three planned spot radiation treatments on his shoulder and the “egg” on his head. Dad dons his grey, flat cap when he is out in public these days. He has a large, bright blue oval, hand drawn in marker, around the “egg.” The oval is used as a guide during the radiation treatment. His tumors are vehemently necrotic with crusty, black scabs on his head as if the angered tumors are protesting their own death from the radiation. Good riddance tumors!
Earlier, in the morning, Dad had called me asking if I was available at 4:00 p.m. to meet with the funeral planner. That is certainly not the typical call to receive from your dad nor anyone else. Upon entry into the Blount Curry Funeral Home in the afternoon, we were immediately overwhelmed by the smell of roses. All three of us started searching for the source of the strong, rose scent. I was anticipating multiple, large vases filled with beautiful roses. Perhaps, a service had just ended. No roses were to be found. I then immediately thought of President Snow.
An odd thought to have…at an odd time…at an odd place. For those of you who read the Hunger Games trilogy, you will recall President Coriolanus Snow, the main antagonist, and his passion for white roses. In the books, President Snow grows genetically enhanced roses to increase their scent and wears them in his lapel to disguise the smell of blood on his breath.
The funeral planner started the meeting commending Mom and Dad for being there. She was also impressed that I, the daughter, was present. Even though advance funeral planning is on the rise, I imagine it is still not the norm. The funeral planner explained the advance planning process and answered our questions. There were some awkward moments in the meeting. For example, Dad asked me where Husband and I were going to be buried since it may influence Mom and Dad’s burial location. Husband and I have not had that discussion. But, I did make it clear that Mom and Dad should be buried where they want, not where Husband and I will be. With families becoming more mobile and not residing in the same hometown, the family plot is not as large of a requirement as it once had been. Husband and I have space available in family plots in separate states.
One decision made during today’s meeting is Mom and Dad will be buried in Arlington National Cemetery. Dad had a full military career as an officer in the U.S. Air Force. Dad comes from a long line of those who served in our military back to the American Revolutionary War. We are extremely proud of the men and women who fought and died to provide Americans the freedoms and democracy enjoyed today. We also never forget the sacrifices of the families supporting those in the military. Mom noted that Dad would be close to the Vietnam Veterans Memorial. Dad’s younger brother is listed on panel 05E.
We later learned from the funeral planner that the rose scent is from an artificial fragrance being diffused within the funeral home. In a similar manner used by President Snow, the reeking rose disguises the smell of death in the funeral home.
I no longer care to smell another rose.
by Jena | Jan 28, 2016 | Radiation Therapy |
Yesterday was Dad’s last TSEB (aka rotisserie) treatment. Dad had a sense of relief knowing that he no longer had to endure the medieval torture. Phew!
Today, Dad started with a routine blood draw. His hemoglobin level was acceptable at 8.7. The two neupogen shots, which Dad received on Tuesday and Wednesday, had been very effective. Dad’s white blood cell count was now at 2.16. Even though his white blood cell count is on the lower side for a normal adult, it was a dramatic increase from earlier in the week. Mark Honor, physician assistant, determined that Dad would not need to receive his third of three planned neupogen shots today. Dad’s platelet count was extremely low at 11. Dad is required to have his platelet count at 50 or greater in order to have his PICC (peripherally inserted central catheter) line removed and his central line catheter inserted on Wednesday. Thus, Dad received another platelet transfusion. He ended the day with spot radiation on his shoulder and the “egg” that now looks more like a dark crater.
by Jena | Jan 25, 2016 | Brentuximab Vedotin, Radiation Therapy, Stem Cell Transplant |
Dad’s Monday started early with a blood draw at 7:30 a.m. at the Moffitt Cancer Center at International Plaza (MIP). He then met with Mark Honor, physician assistant, at 7:45 a.m. Dad’s platelets are down to 13. His white blood cell count is low at 0.4, but his hemoglobin is looking fair at 9.5. Looks like the two bags of blood last week helped boost his hemoglobin. Dr. Sokol, hematology oncology, indicated that Dad should receive 3 shots of neupogen this week, on Tuesday, Wednesday and Thursday, to increase his white blood cell count. At 9:30 a.m., Dad received his second infustion of brentuximab vedotin. During the first 30 minutes, Dad received his pre-medications of Tylenol and Benadryl. Dad then received the brentuximab vedotin for the next 30 minutes without any side effects. At 12:45 p.m., Dad received his 6th of 8 TSEB treatments. When he says that the TSEB treatments are “unpleasant,” I can tell he is biting his tongue from saying what he really thinks. Only two more rotisserie sessions left.
How to wash your hands.
I am already somewhat germaphobic (and claim that Dad passed that gene onto me), but with Dad’s weak immune system, I am constantly washing my hands. I am always barking at Husband, Son and Daughter to wash their hands. Today, Son stayed home from school due to a terrible cough. Mom is highly concerned that I will end up with the same terrible cough, which would impact my ability to be there next week for Dad’s move-in day. Dad will be admitted as an in-patient for his stem cell transplant next week on Thursday, February 4th.
Time for me to wash my hands.
by Jena | Jan 24, 2016 | Uncategorized |
God has given us two hands, one to receive with and the other to give with.
Billy Graham
It is important that we, recipients of the good works of others, recognize and appreciate the organizations that are making a positive difference in the fight against cutaneous lymphoma. The Cutaneous Lymphoma Foundation, whose mission is to support every person with cutaneous lymphoma by promoting awareness and education, advancing patient care, and facilitating research, is holding a question and answer event, locally in Tampa, on Friday, February 19th, from 5:30 p.m. – 7:30 p.m. at the Embassy Suites in downtown. Two of Dad’s doctors, Dr. Glass and Dr. Sokol, are the guest clinicians that evening.
The Moffitt Cancer Center’s Magnolia Ball is one of Moffit’s annual signature fundraising events. Since the first Magnolia Ball in 1994, over $33 million has been raised to help Moffitt develop new ways to prevent, treat, and cure cancer. This year’s 23rd Magnolia Ball, Saturday, April 9th, at the Tampa Marriott Waterside Hotel, will celebrate Moffitt’s 30th Anniversary and will feature live music by the Goo Goo Dolls.
by Jena | Jan 22, 2016 | Radiation Therapy |
The original plan for this week was for Dad to complete his TSEB (total skin electron beam; aka the rotisserie) therapy.
Monday, January 18th: No appointments on Monday, January 18th, due to the U.S. Holiday for Martin Luther King, Jr.
Tuesday, January 19th: Dad met with Dr. Montejo, radiation oncology, to discuss his progress and to share with Dr. Montejo that his legs were quite red, tender, and slightly fragile. Dad had easily nicked his leg and had an open wound. Dad and Dr. Montejo discussed whether the tender, red state of his legs were due to the radiation or the disease. Dr. Montejo did not think it was due to the radiation treatments, but Dr. Montejo took a photo and sent it via email to Dr. Glass, cutaneous oncology, seeking his opinion. Dr. Montejo was pleased with Dad’s response to the radiation therapy overall. He said that Dad is “looking good.” Dad received his fifth of eight planned TSEB treatments that afternoon.
Wednesday, January 20th: Dad met with Dr. Montejo again to discuss Dr. Glass’ feedback on his legs. Dr. Glass seemed to think it could be due to the disease or the radiation. Dr. Montejo made the decision to pause Dad’s remaining TSEB treatments until next Monday.
Thursday, January 21st: Dad received a call from the Moffitt Cancer Center at International Plaza (MIP) in the morning asking Dad to come in for a blood transfusion (for red blood cells). Dad received one bag of blood.
Friday, January 22nd: Dad returned to MIP for a second bag of blood (for red blood cells). The nick on Dad’s leg is healing and has now scabbed over. His platelets are doing their job!
Dad has not been going to the gym as he intended, but he is walking more. Unlike those buried in snow along the East Coast of the U.S., Mom and Dad are getting outdoors and enjoying walks through the neighborhood. The weather in Tampa is lovely this time of year with highs in the 60s.
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