Welcome to 2020! I’ll be posting updates to this web page as well as new posts as the year goes along.
The year started with a wonderful gift from my friend and fellow #tkrpambassador Maureen, who coordinates The Kindness Rocks Project called #SmilowRocks!
The Kindness Matters rock now lives on the table next to my recliner in the living room, the courage strength hope rock is next to my bed, and I carried the comfort love & peace rock with me when I met with my medical oncologist this past week. It really did help! I did not get good news at that visit, the metastasized uveal melanoma is continuing to spread to new areas and increasing in my lungs, spine and bladder. It is too soon to see whether or not the Sir Spheres radiation treatments I had in November and December had any effect or not.
My options are very limited but I am at peace with the decision to try immunotherapy again, this time just one drug, not the two which led to a serious adverse reaction in the past. But it is still very scary, but just as scary as waiting for the cancer to start causing me to feel ill so right now, this seems like the best option to offer me both a good quality of life and the chance for greater quantity of life as well.
Last month has ended well! I had my first of the planned monthly immunotherapy treatments, and initially I did not experience any adverse effects! But unfortunately my surveillance bloodwork in February showed I was having Adverse Effects again. My CK level was up and most concerning, so was my Troponin level (monitoring for cardiac damage). I was immediately put on steroids which fortunately worked right away, and I was able to taper off pretty quickly.
I was able to make a rock donation to the local community center for The Kindness Rocks Project bowl I have set up there as an Ambassador for the program, and I was really thrilled to find out that others are dropping off rocks as well! I am taking a little break from rock painting to work on a knitting project which is taking up all my hobby time – a real labor of love!
March has been very challenging for everyone around the world. Practicing social distancing while at the same time, I have to visit the blood draw station every week. My CK level stayed stable within the normal range. Unfortunately my Troponin level may never return to completely normal but I knew that was a possibility going in, and that I may have permanent cardiac effects. Hopefully the effect on my daily life will be minimal. I’m tired a lot but since I am staying home along with the rest of the world, it really does not impact me too much. So I rest and do a lot of knitting!
Social distancing continues to be emotionally difficult. I am grateful for ZOOM visits with my family, and updates on Instagram from my kids and friends. This month is Scan month. I’m anxious about going into the hospital and laying in the same machines that may have scanned coronavirus patients before me. But it is what it is and I am a bit calmer thanks to the gift of DIY face masks from my friends Ellen and Elizabeth. I do not know what is next for me and the future is scary either way for everyone, but more so for those of us with weakened immune systems or underlying health conditions.
UPDATE: My scans were bad. The cancer has progressed and spread to new areas. I have one option left, which is to switch immunotherapy drugs and hope this is the magic I need. The coronavirus is making all of this even more difficult but both of my children are making “essential travel” visits to see me, while we practice the emotionally very difficult social distancing. This was not what any of us had expected since I am not in liver failure so the years of liver directed treatments have prolonged my life, but the cancer has taken over my lungs. If this treatment either does not work or the adverse effects are too serious, my next step will be hospice. I wrote my final post today and whether I update this page in the future will depend on how things go from now on. Thank you for visiting and for your support.
I am currently two weeks since my ipi infusion. I’m continuing to have a lot of trouble with nausea and lack of appetite, but I have an RX of THC. My oxygen level is consistently lower than it should be, so palliative care is going to get me set up for home oxygen. The ipi rash started yesterday but it’s not too bad, I’ve got a prescription cream ready to pick up the next time someone leaves the house.
My visits with my adult children and staying in touch with friends by phone and social medial leaves me very satisfied with the choices I made and their impact on my Quality of Life. I made the decision today to delete my Good Things Blog Facebook Page because the amount of visits compared to the amount of energy I put into it, do not justify the time and effort. I made my last Blog Post at the end of April as well: My View on Faith
To be very specific, back in April after my scans showed progression, my oncologist said I may only have weeks, maybe months, left to live.
My kids rushed to my side from both coasts, risking their own safety during the height of the coronavirus qarantine. I am and will forever be grateful and especially grateful that we are all still virus free. And here I am – I beat the odds on weeks, and I am going into my 3rd ipi immunotherapy infusion this week if my bloodwork holds steady.
Last week I was ready to give up and switch over to hospice care.
My nausea which I was controlling with an FDA Cannabis drug (THC not CBD) was not helping and I had a wave of “high” feeling that left me throwing up. It was downhill from there.
I was not able to eat for days, Thursday I was ready to just abandon treatment (ipi) and switch to hospice. But my oncologist got me into the hospital for 1/2 a day with iv Zofran (nausea) and loads of fluids. He put me on a low dose steroid (reduce side effects but hopefully not negate any possible immunotherapy effects) and a prescription ant-acid. Friday was my first bite of solid food and Saturday I didn’t even need the oral Zofran!!
I’m still in bed because I’m too weak for stairs – I almost collapsed getting upstairs Thursday when I got home so I’m taking it slow – still not as bad as when I needed a walker though, so that’s a positive. If I feel this well on Thursday I’ll go forward with my next infusion. Just trying to get two more complete in June, then scans.
I thought complaining about nausea was weak and so many people suffer from such worse pain and discomfort that I was being a baby. Both my friends doctor husband and my oncologist told me no, it can be one of the worst things that destroys your quality of life! When my big, burly ER Doctor friend made his wife call me so he could talk to me he was so funny “I have only thrown up six times in my life! It’s HORRIBLE!! Call your doctor!”
So weeks has turned to months and I am still here!
Because this personal journal really does not seem to be reaching many people so the help I hoped it would provide to others has not turned into much help, other than fundraising for Closer to Free Ride 2020 I will no longer be using it for updating others about my condition. My “real life” friends know were to find me, my Facebook friends do too. So this is my last update to my About Me pages.
Thank you to those who did take the time to read about my story and I hope anyone who needs to hear this message does – be grateful for every day, share your LOVE with others, and share Kindness any way you are able. Fondly, Sue
— Sue Sawhill Apito