It's a Roller Coaster

It's been a long time since I've posted an update. This makes me sad. I love sharing with you. I find so much meaning and purpose in being able to walk out this journey in community with you. But 2023 was a hard year...

In January, my scans found tumors on my pituitary gland and in my left eye. We also found the source of the terrible pain I had been having was cancer throughout my right shoulder blade and I went through a week of radiation to treat the pain. In February, in preparation for gamma knife surgery on my pituitary gland, they discovered cancer in my brain and a second tumor in my left eye, a tumor that hadn't been there only 10 days earlier. I was able to get my brain treated by the gamma knife surgery at the same time as my pituitary gland, and I did a week of radiation to the tumors in my eye with my head bolted to the table to hold me still while they did this. In April, the cancer in my liver worsened, and I had to change treatment yet again, this time to IV chemo, which I started in May.

The switch to IV chemo has been the most difficult part of my cancer roller coaster so far. To say I am a full-time patient is no joke. Cancer seems to consume my time. My life is now divided into three-week segments. Weeks one and two each get an entire day devoted to chemo between getting there, going through the three-hour-ish infusion process, getting home again, and recovering from all the pre-meds I'm given. Then there is nausea that makes me feel like I'll never enjoy life again and endless wondering over what will sit well on my stomach. Fatigue that causes me to sleep twelve or more hours a night, to struggle to get out of bed when I do wake up and still need a nap during the day. The injections I have to give myself for four days after week one's chemo, to keep my white blood cells up. The on-body device I wear in week two to give me yet another injection to keep my counts up. The prescriptions I have to fill and refill. The various other appointments I have - for scans and ongoing follow-ups with my oncologist, neuro-oncologist, neurosurgeon, pituitary specialist, and psychiatrist. For weekly counseling and group therapy. And of course, all the EOBs to understand and bills to pay.

Week three is something to look forward to, though! I don't have chemo on week three. Towards the end of the week, I start feeling better. Everything looks brighter. I feel more capable and energetic, and my brain seems to work better. We've even managed some travel during this week. Thank God for week three!

So 2023 was a hard year, and I'm sad that I haven't been able to post in a long time. I hope that I'll continue to learn better ways to manage my cancer's requirements while still accomplishing things that are meaningful to me. But all the effort to take this treatment is currently working! For nine months now, my cancer hasn't grown. The tumors in my eye and on my pituitary gland were successfully treated with radiation and gamma knife surgery and no longer even show up on my scans. My tumor markers and liver enzymes continue to be in the normal range. We are so thankful.

And we are so thankful to you - for the rides, for the meals, for the encouragement, cards, and sweet gifts. For allowing me to be a person and not just a patient. For all the other many ways you serve us. We are blessed. You are the best part of 2023.