Hi Folks! Welcome to the community. I will try to update this page regularly so that whoever wants to be in the loop - can be. Here's the history: I was diagnosed with marginal zone lymphoma in 2014. It was explained to me that it was chronic, that it would need to be treated every now and then (sort of like beating back the weeds in your yard), and that I was more likely to die from a bus running me over than from the lymphoma. It needed treatment (finally) in 2020, which was delayed due to Covid. I began treatment in April 2021 ( B & R, for you medical nerds). After four rounds, all cancer had disappeared from my body except for one "hot spot." It took open abdominal surgery in November 2021 to determine that the original lymphoma had "morphed" into another type of lymphoma - Diffuse Large B Cell Lymphoma. It is much more aggressive. I had four rounds of a different chemo (R-CHOP) from December 2021 through March 2nd of this year, only to discover that the chemo kept the "hot spot" from growing - but it did not shrink it. This is disheartening, as the second round of chemo I had usually takes care of things in 90% of the cases. And that leads us up to the present moment.
Here's my next step: I will have a 4 week regimen of chemo. It was unfortunately put on hold for two weeks, as I broke out with a small case of shingles (not to worry - it was not painful - only a little itchy. Antivirals helped them heal). I will be admitted to the hospital tomorrow night, April 10th, for the first of a 4-week regimen that looks like this: Week 1: 5-day in-hospital stay where I will receive a different set of medication/drugs each day. Day 2 will be my hardest, as there will be 3 types of chemo, with one of them having what I am calling a "side-kick-med." The side-kick-med reduces the toxicity of the one chemo. How the heck they balance that out, I'll never know. Day 3 there will be one chemo, Day 4 they will monitor me, and Day 5 I get an injection that will stimulate my white blood cells to grow back. My immune system will be extremely depressed. The only good thing I can think of is that I am well-practiced in isolation measures, given Covid. ;-) Week 2: I will receive one infusion of monoclonal antibodies Week 3: Again - 1 infusion of monoclonal antibodies Week 4: Rest Week Week 5: repeat weeks 1 through 4 - and then get a PET/CT scan to determine progress. Week 9: repeat weeks 1 through 4, if necessary. Here's the hard part - and I just learned it today: this treatment has a 50% response rate.
I have discovered intravenous Vitamin C, for which I pay out of pocket. It has just about eradicated a cough that I've had since last June that started after my 3rd week of the first round of chemo. I am still locating a doctor with whom I am comfortable and who does not charge me through the nose. At the moment, if I can continue to work a little bit, I foresee this as being my greatest expense. My insurance is good so far, but it does not cover alternative treatments such as intravenous Vitamin C, acupuncture, etc. If I cannot work - well, more will be needed in the way of food and shelter. ;-)
I am aware that I am not well-practiced in asking for help or in asking for what I want or need. I have taken care of myself for so long - and with decent results - that I have forgotten what I might even ask for or how to do it. I will do my best, though, to ask and be specific. I welcome phone calls, cards, and visitors - please reach out and I will tell you if I am up for talking or visiting. If I say no - please don't be offended. On the other hand, I may reach out to you if you are already in my address book. I can say this: I don't respond well to hovering. What works best for me is someone who can be present - who is willing to rub my feet, hold my hand or simply bear witness - without having a stake in the matter. And, as I think about it, I may need better food while I am in the hospital. I've not been in many hospitals - but not one of them has had decent food. ;-)
Things will become more clear as way opens. Julian of Norwich, a great mystic, said that "All shall be well, all shall be well, and all manner of things shall be well." I have to believe this. Another friend offered, "Everything is working out for my highest good. I am safe." May each and every one of us find truth in these statements.
Thanks for reading...and thanks for tuning in. The first entry will commence tomorrow evening, after I am tucked away in my space at the hospital.
Love,
Deborah
PS - Address: 132 N. Broadway, Tarrytown, NY, 10591
Below is the Facebook event for mom's memorial. If you are going, could you please respond just so I have a basic count for food. If you don't have a Facebook no worries, I just need a ball park as I talk to caterers.
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