Well, maybe an 🍎 each month.
It's the end of February. I've been to NYC twice, with a third trip scheduled in May.
I finished radiation on January 10th and have lost a lot of hair throughout the treatment zone. On January 31st, I was told by my local Oncologist that I was in remission- and I felt good (or better) for the last week of January.
On February 6-8, I was back in Manhattan to discuss systemic treatment.
Keith flew with me and we tried to enjoy this new news. My scans were clear and I was walking without a cane. I was even able to hobble up a set of stairs in a place off Times Square.
The day leading to my second visit with Dr. Diamond at MSKCC, was good. We even spent the day of the visit on Broadway, at the Cathedral, and missing our taping of late night talk shows.
At the appointment, we discussed my options to treat the rest of my body to get rid of this (as he described it) blood cancer.
Do nothing
Take a pill every day for the rest of my life, with routine eye checks because there can be some fluid build up in the eyes, and avoid forgetting the meds because the cells come back.
Get the chemo, and try to kill the LCH. The closest offer to a cure yet, with a hope of 12, 29 day cycles. Having five days of chemo then the remainder off.
In the moment, I'm ready to kill this invisible disease and take their recommendations seriously to opt for the chemo but in the back of my mind, I'm relishing in hearing the word remission a week ago.
I asked Dr. Diamond to explain what I'm in for- what is LCH? What am I looking out for? And what makes them recommend systemic treatment?
As I already knew- my system level involvement was clear:
I'm swollen (huge) like 60lbs worth with a moon face. Not recognizable by my iPhone
I'm sick and keep getting worse, pain is still in my joints even after the steroids left my body
My inflammation markers are all over the place and my labs never match my symptoms which is just annoying
Although my PET scan was clear of tumors, LCH can affect organs in other ways and I'm about to learn more in a couple weeks----
Dr. Diamond is a truly decent human. He doesn't flower his delivery or mince words. He answers my questions about the future and the goal. With or without treatment my next (potential) 3 years the greatest risk is repeated LCH occurrence. The following 5 years it's most other cancers (lymphoma, bone, organ, ect..). The chemo is the best chance at long term outcomes.
With this, I agree to the chemo with the goal of taking it back home.
But first- I need to get home.
The flight back on the 8th results in the worst swelling yet and I can't bend my ankles for about 3 days (10-13th).
Most of all---- I'm definitely still in pain. Almost all the time.
The swelling on 2/13 is out of control--- but after my flight in January, this same pattern resulted in lasix and compression socks. So I try taking another round of lasix and using compression until I'm seen by the rheumatologist on 2/14.
That appointment was only set as a rule-out for other potential autoimmune conditions- so I didn't expect any earth shattering changes. They looked at me, remember my face from the past year of check ups and quickly mention cushingoid appearance and the need to see an Endocrinologist ASAP. They fax a new order and I stay puffed waiting for the new appointment on the 19th.
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