A final Update in 2023

I hope this finds you having a wonderful holiday season. I have a number of updates. On Dec 26 I got prepped for Radiation, it’s a processes that involves having your arms above your head for almost an hour as the machine maps your body, completes a CT scan and then you get three tiny tattoos. It should be easy but after surgery in the arm pit it was painful to hold the arm in place but I got through it. The tattoos help ensure that each day you come in, radiation beams go in the right places. Since my breast cancer was on the left side I was asked to do a lot of breath holds. The heart is on that side of the body so they try to avoid the beams of radiation negatively impacting the heart. I’m now ready for a month of daily radiation starting with Jan 9, final walk through and Jan 10 as day one.

Also on Dec 26 I had an MRI done on my left hip. When the worst of the AS flare started to improve there was a sharp pain in my left hip that was not improving. The MRI showed that a tendon that connects to hip joint is torn. Another sign my AS progressing. But in the big picture it was good news as there is no cancer in my bones. Bummer news is since there is no cure for AS this crap will continue to happen. I have an orthopedic appointment in a few weeks to see if I need to do anything special with the hip or if it’ll heal well on its own.

Some real positive news, the Oncologist doesn’t think I’ll need my port anymore! On Jan 3, I have a quick out patient surgery to have it removed. The doctor has not yet said I’m in remission but I’m hopeful to hear that news soon.

The most annoying update I have to share is that I developed a new symptom as on Dec 23. I have balance issues and dizziness when I change positions. Think standing up, sitting down, rolling over in bed, that type of thing. It’s really annoying. The cause could be from multiple sources. The most likely sources: 1) my ears, since I had hearing loss due to chemo, my inner ear may be acting up. I had an ENT appointment yesterday that showed my hearing loss is the same as it was two months ago but there is a little fluid in one ear. It’s possible that’s the source but an MRI would tell us for sure. 2) it also could be another impact of AS progressing. I have chronic dull pain at the back of my skull, something I’ve had for years but it’s possible that my spine in that area is impacting balance. The part of the brain that controls balance is near the base of the skull. An MRI would help determine this. 3) most unlikely but still something that needs to be ruled out is cancer. Breast cancer can spread to the brain. But this is unlikely as my surgery showed that all cancer in the lymph nodes where dead so likely the chemo killed any other stray cells or at least that’s the theory. So that’s a long way of saying I have a brain MRI in my future.

My heart goes out to all chronic pain sufferers out there regardless of its source. No fun. I had about a week where I really thought the biologic injections where starting to work but I’m still struggling with spine, joint and newly balance issues. I get to take another injection on Jan 1 so crossing fingers that month 3 is the magical number where it starts to work again. There was a time that those with incurable diseases would be able to leverage opioids for temporary relief but that’s not real common now. Due to the focus on the opioid epidemic and reducing risks of accidental deaths and dependence doctors avoid providing to patients. Which, of course, is understandable however this cancer journey has been eye opening to me. They are given fairly openly to chemo patients and my personal opinion on this is because cancer will either kill you or goes in remission so it a temporary type scenario. Incurable diseases with chronic pain are just that, not likely to kill you or improve. More people die in the US from suicide due to chronic pain that accidental overdose. It’s a sensitive subject in the world of medicine but one I think both sides should be openly discussed.

Thanks for letting me shared my uneducated but personal experience on the topic. I feel super blessed to live in a time when biologic medicine exists, these injections have the hope of reducing pain and damage to the body for long periods (without opioids) and biologics have not always existed. A true qualify of life saver for many autoimmune diseases. I feel lucky that I just need to deal the gaps between when one biologic fails to work and months before a new one starts to work.

Another update is that I start the journey of medicines to reduce the chance of cancer coming back. They start me on the medicine for younger women (tamoxifen) but since I’m high risk after I adjust (nausea and other symptoms need to be tolerated) then I’ll be given weekly injections to shut down my ovaries. After a month or so of those injections I’ll start the transition to the medicine for post menopause women. Most recent studies have shown this reduces reoccurrence rate better than just staying on tamoxifen.

Long down the road I’ll go on the chemo pill for two years. She said my body would not handle doing all this at once. I’m grateful for the staged approach.

I’m not thrilled with starting tamoxifen at the same time as radiation and usually my oncologist waits until after radiation but she’d like me to try to do both at the same time due to my younger age and high chance for reoccurrence. I’m game to do anything that will keep cancer away so I’ll start as soon as I heal from port surgery. Crossing fingers my body handles well, considering the high inflammation in my body due to AS not well controlled at the moment.

Final update is I officially have a reconstruction surgery date! On July 31, 2024 I’ll have the DEIP flap surgery done which I look forward to.

All in all, I’m so happy that it appears chemo worked and I see the active treatment portion coming to a close. I have faith that the biologic will start to work soon so I get a break. I want some pain free days soon. Here’s to a much healthier and less drama filled 2024!

Thank you so much for your love and support in 2023. Words can’t describe how grateful I am.