I’m pretty shocked that August has arrived, but it has. Every new month shocks me because life goes by so fast! Today started like every other day…..I didn’t want to get out of bed. Sleeping is so nice because in my dreams there isn’t any pain. My dreams may be weird, but at least they’re pain-free.
I pulled the ice pack out of the freezer after a quick breakfast and even tied it around my back so that I could take the good feeling with me as I walked around. After sending an email to my dermatologist over the weekend, I was pleasantly surprised to get a phone call from them. They had some openings for appointments and wanted to see if I was available.
My doctor wanted to see me before scheduling more Phototherapy sessions in the hospital. We had a telehealth conversation on my phone and we could see each other. Thankfully, our connection was good enough! I had been having spotty reception all morning. The doctor asked me all the cancer questions: have I been losing weight, newer levels of fatigue, etc. She told me that someone would contact me for scheduling.
These appointments are scary because I started having a lot of allergic reactions during my last month of treatments. My Mycosis Fungoides spots are increasing in number and some are bigger. I feel like I have no choice but to start the treatments again, because phototherapy is the first line of treatment.
Although I haven’t stopped my steroid cream treatment, the increase in spots is very concerning. The doctor will also do blood work when I come to the hospital to see what my blood is doing. Cutaneous T-Cell Lymphoma (Mycosis Fungoides) can stay on the skin, but it can also enter the body.
I’ll be going home to start treatment in a week or so and dread the three weekly appointments. Having to drive 40 minutes to the hospital isn’t too bad but it really adds up and makes me more tired. Now that my husband is also undergoing a lot of treatments for cancer, I’m not going to be able to count on him to drive me all the time.
Chronic life is harder when the person who has taken care of you needs care. We’re both tired much of the time. Thankfully, he isn’t in any pain. We will just continue to encourage each other and keep reminding the other to take care. Having a chronic illness takes every bit of your energy and strength. Times of resting, helping the body with appropriate movement, and self-care are absolutely necessary.
You keep him in perfect peace whose mind is stayed on you, because he trusts in you. Isaiah 26:3
@2021, copyright Lisa Ehrman