07/13/2026
We are back at it… headed to the City of Hope. I haven’t really given a full update about what’s going other when I am asking for prayers, so I thought I would go ahead and do that now.
This visit specifically will be about:
❤️🩹 Surgical oncologist: Discuss the potential for a debridement surgery for the removal of scar tissue from both my cancer surgeries, there is a lot of scar tissue causing issues like cramps and pain.
❤️🩹 Neurology/ Pain Management: I had shingles in Sept/Oct of last year. I started noticing my right leg going to sleep with no warning like tingling or the lack of ability to get my leg to ‘wake up’. This feeling spread to my other leg, my feet, & then the bottom half of my trunk. Initially it would last for hours but then I had an episode that lasted over 36 hours. This is a rare side of effect of shingles call neuralgia. There is little doctors can do about it.
The numbing medication in my pain pump (that is surgically implanted in my body and tethered to my spinal cord) was reduced 30% to see if the medication had something to do with the numbing. The decrease had no effect. The neurologist said it was the shingles attacking my nerves. By this point I was semi paralyzed and there was little hope I would regain feeling and the ability to walk normally or without aids was diminishing. The thought was that the Shingles had done so much damage to my nerves that they would not regenerate fast enough for me to recover. I started home health physical therapy focused on learning how to use mobility aids like Rollators, with/without arm supports and wheelchairs.
This was a rough time for my emotional wellbeing. Cancer had already taken so much from me now I was dealing with the realization that I might not be able to walk.
Eight months into this newest ‘reality’ my pain doctor had been researching, reaching out to other professionals and attempting to figure this out.
He came up with a plan to take out all my numbing medication in my pain pump, 100% removal. He wanted to rule out that it had nothing to do with what was going on, even though I had been on the numbing medicine before the shingles & the reduction had done nothing. Perhaps the shingles and this medication were having some sort of non-typical reaction together.
The medicine was out and I slowly started regaining feeling in my legs and such .95% of the numbness is gone!! To be on the safe side, to make sure there are no issues with my pump, I am having a Nuclear Medicine Myocardial Perfusion Rest and Ejection Fraction & SHUNTOGRAM FOR INVESTIGATION OF PREVIOUSLY PLACED INDWELLING NONVASCULAR SHUNT (EG, LEVEEN SHUNT, VENTRICULOPERITONEAL SHUNT, INDWELLING INFUSION PUMP), RADIOLOGICAL SUPERVISION AND INTERPRETATION- CATHETER DYE STUDY (INTRATHECAL DRUG DELIVERY SYSTEM).
❤️🩹 Cardiology: My cancer can cause Carcinoid Heart Disease (CHD), which is a cardiac complication of metastatic neuroendocrine tumors. It occurs when tumors release excess hormones—primarily serotonin—into the bloodstream, causing fibrous, plaque-like deposits to form on the right-sided heart valves (the tricuspid and pulmonary valves).
These deposits lead to valve thickening and malfunction, forcing the heart to work harder and often resulting in right-sided heart failure.
My heart already has heart palpitations, high heart rates while resting and very low heart rates-bradycardia, pvts, svts & pacs.
This visit I will be having NM Stress Test & Nuclear Medicine Myocardial Perfusion Stress and Ejection
Fraction. The docs are keeping a close eye on my heart and being proactive which I appreciate!
Other things we are continuing addressing or are in a ‘wait and see phase’ but not at this visit:
❤️🩹 Pulmonology: My diaphragm is partially paralyzed but they don’t know why. My left lung has also shrunk which we are not sure the cause of this either.
❤️🩹 Gastroenterology: My stomach is paralyzed on the output. We are trying to manage it with medication now but it doesn’t seem to be working.
❤️🩹 Neurology: I will be having a nerve conduction study.
❤️🩹 Oncology: Will be having a pet scan in September to keep a watchful eye on the lesions on my liver and pelvis lymph.
❤️🩹❤️🩹 I will also need to start seeing a rheumatologist and dermatologist.
❤️🩹❤️🩹❤️🩹 Therapies: I will continue my home health physical therapy to help with the deconditioning of my body. I also need occupational therapy as well as speech therapy.
❤️🩹❤️🩹❤️🩹❤️🩹 I have other ancillary health issues as well.
Whew!!! ‼️‼️‼️
