I wrote this in February..... Never had time to publish it, but I'd like to share my thoughts from then.
All my days are running together. I take pills all day long. Two with breakfast, two with lunch, two at dinner, one with my evening snack, and one at bedtime.
I have bloodwork once, sometimes twice a week. Side effects are many. One is hyperglycemia (high blood sugar) .We keep stopping one of my meds, Itovebi. Then restarting it . I have been eating low sugar and carbs. They put me on metformin. It's still not controlling blood sugar. They raised the dose of metformin, hopefully it will work this time. Diarrhea almost daily. Fatigue gets me at random. Some days I feel wiped out all day. My eyes water all the time. My skin is so dry. My lips are so dry. my hair is falling out. Not like with chemo, but definitely more than normal.
I'm Still momming. I'm taking kids where they need to be and doing what needs to be done for them, even while leaning on them for help with housework. I'm tossing my cancer pills back as I'm running out the door to go pick up my daughter from drama club. All of life outside of cancer is hard right now too. I still live in the moment, and find joy every day.
My scans are next month. I hope the meds are working. I go through moments every few days or so where I feel my future has been robbed from me. At least the future I thought I would have. I think about the forever medications and side effects I will have. The forever bloodwork I will have, forever scans, until progression can't be stopped, and I die. I wonder how long my current and future mediations will work. I wonder if this first line of therapy will work. I wonder if the cancer will break any of my bones. I wonder when the cancer will eventually spread to my brain, liver or lungs..... or elsewhere besides my bones. I fear future pain and suffering. I cycle through those thoughts and more. Then I snap back into the life I am enduring all of this for. The life that I so desperately want to live , and enjoy. I concede to the fact that I will have to live alongside cancer and all that comes with it, for as long as I am alive.
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Now on to the present...
I didn't have my scans in March. I had them on April 13th, and I'm happy to say that My disease is stable! It's not remission, but there is no active cancer seen on PET/CT. My bones are still eaten away, but trying to heal. NO NEW SPOTS! NO SPREAD TO ORGANS!. It's wonderful news!! We finally got my blood sugar under control. They had to add Mounjaro Injections, and I had to further refine how I eat. Since starting the Mounjaro, I have good blood sugar numbers and I have lost 30 pounds. My Oncologist is on board with the weight loss as we both agree my bones and joints will thank me. I do feel lighter on my feet! I still seal with all the crazy side effects, and have good and bad days, but I have more TIME, and a good quality of life, and I'm so so glad!!
I am so grateful and happy for my good scans, but we are now facing a devastating blow to our family. My husband has recently had to stop working due to end stage Liver disease. I have not shared anything publicly about his illness until now. He has been battling this since a hospitalization for bleeding esophageal varices and Hepatic Encephalopathy in July 2025. Hepatic encephalopathy is form a build up on ammonia in the brain due to liver failure. It causes symptoms of confusion, dizziness, behavioral changes, stumbling, and shaking. It can also progress to coma and death if not treated. It was a very scary time. He slowly started feeling better after his hospital stay, and things were looking up.
Then came my stage 4 cancer diagnosis, and he was still doing OK. His health started declining again after the new year and last week we made the decision it would be unsafe for him to continue working. Now we have no income coming in. He will be eligible for long term disability in three months, and we really need help to bridge the gap until then. I have applied for state assistance and Medicaid. He is on FMLA for 12 weeks, and we can keep his insurance during that time as long as we pay premiums, but if we can't pay them I am crossing my fingers Medicaid will be approved for us.
I am sharing a go fund me for our family in hopes that anyone can help us get through this. If you can't donate, then share the link everywhere. I set our goal for $12,000 to cover three months, but go fund me shows mini goals. Our needs will be ongoing to help cover costs of living and transportation to many medical appointments even after he starts getting long term disability. I never imagined we would both be battling serious ongoing illness at the same time.
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