Tomorrow my husband will receive Keytruda Treatment #32. I have attended most appointments and treatments with him, but tomorrow I am going to Louisiana to visit my mom. Our oldest daughter has come up to visit and will go with him. This is the first time one of our adult children has gone to the doc and infusion center.
I'm feeling hopeful that this will bea supportive opportunity for her and her dad. Going to sleep tonight feeling blessed.
Wow! You guys are rock stars! I'm curious about the number of treatments that our caregivers on here have attended and how that has impacted you.
Gosh CassieMRF, I had not thought about what the total number of treatments/ doctor visits I've attended as a care partner but I just did a rough calculation of melanoma oncology appointments, infusions, surgical consults, second opinion consultation, CT/MRI, mental health professionals (Psychiatrist and social worker) appointments, and skin check ups over the past 27 months since my husband was diagnosed and I came up with 106 visits. I have not generally attended blood lab draws but have assisted with transportation to probably 1/4 of the 40-50 that have occurred.
Impact on me: I am an information hog and I learn best by doing, so being able to be present for discussions with the care teams, to see and participate in looking at the cancer as it developed, spread, was surgically impacted, and response to interventions was important to me as part of an act of partnership and to shoulder recovery efforts. Because my husband's cancer is on the top of his head, it is also far easier for me to see than for him. And because I put a medication cream on the spots 5/7 days a week, I look at his head a lot!
This has produced a rollercoaster of feelings for me over time time. I saw the original single black small pimple-like spot that itched. I watched it get bigger between when it was biopsied and surgery. I saw it disappear and the large section of his scalp heal post surgery and how a scar eventually developed and hair grew back. Then I saw small dots appear in another location on his head, which led to him starting on Keytruda. This was terrifying. And for months the small dots would colonize and spread, in spite of the infusions. This was also frightening, and I felt afraid that although I hoped the treatment was slowing the cancer progress, that it would kill my husband. So I insisted on time with our families, and on a trip that we had longed for to be booked. We went to Italy to fulfill a long promise and at that point the cancer had started to recede. I learned how to be patient, and to embrace whatever time we had as time to be active. I also had to manage my own depression that had been very stable for years but worsened under the chronic stress of living with cancer, coupled with me also losing my full time job for 13 months.
The impact on our relationship of me attending appointments and treatments: it gives us time when we both fight the cancer together. Sometimes we are talking through what we learned from the doc appointment that always just happens before the infusion. sometimes we have a joint meeting with the social worker that has been providing therapy for my husband. Sometimes we read, or have work to do during the treatment. Thinking out loud here, I think going to treatment has made living with cancer a shared experience, even if it is not my body receiving treatment.
I don't know that this is for everybody. This last treatment our oldest daughter attended the appointment and treatment, including a visit with the social worker. I'll see if she wants to weigh in on this thread about her experience.
Nervous night
Update on Ryan