About half (or more) of the traffic that this website gets are family, friends, neighbors, or others I’ve met during my journey combating cancer these past two years. Several different people now have told me I’m not consistent about updating my cancer journal, and others have told me it can be difficult to find among what else I post to this website.
In order to make it more readable and to follow along my journey, I cleaned up the header menu and added 🤕 My Cancer Journal so that readers can go directly to all of my content tagged with the “Cancer” category. I hope to do a better job of posting my experiences and updates so that people interested can follow along.
Today surprised me. With a break in the cold winter, I was enjoying the warmer afternoon in our back yard with our two Shetland Sheepdogs; Kiyomi and Toshiro. While I was sitting out back, our neighbor called over and we talked for a bit. I really cannot thank him, his wife, and his wonderful family for the kindness and support they’ve shown us over the years. Victoria and I have lived in Westerley (Sterling, VA) since 2002. Over these past couple decades, our neighbors on Burning Branch Terrace have been incredibly friendly, kind-hearted, and supportive of one another. Their concern, advice, and support continues to surprise me and comfort Victoria and me.
To bring everyone up-to-date on my current health:
In November last year, I had a neutropenic fever and a blood-borne infection (pseudomonas). I was hospitalized at Virginia Hospital Center but continued to receive targeted radiation therapy while we were there. Since my Mantle Cell Lymphoma (MCL) had returned after my bone marrow transplant (BMT) at Johns Hopkins, Vicky and I wanted to move quickly for us to be admitted to the Seattle Cancer Care Alliance for CAR-T clinical trials to address my lymphoma where the BMT did not.
Victoria and I returned from the Seattle Cancer Care Alliance (Seattle, WA) a couple weeks ago. We did not undergo the CAR-T trial since mantle cell lymphoma is no longer present as metastasized in my bone marrow after undergoing radiation therapy. I still have mantle cell lymphoma and lymphedema, but both can be treated via traditional chemotherapy. I resumed R2 (Revlimid/Rituxan) upon our return from Seattle. I’ve been receiving IV immunotherapy in the oncology infusion clinic every Friday.
The targeted radiation therapy on my left inguinal thigh and abdomen did a number on the sigmoidal loop (last third) of my colon. I had to do a flexible sigmoidoscopy where Kaiser-Permanente determined the following:
Specimen(s) Received
A: Colonic Biopsy, Sigmoid 1. bx sigmoid ulcer R/O radiation colitis vs GVHD
B: Rectal Biopsy 2. bx
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Final Diagnosis
A. Colon, sigmoid, biopsy:
– Colonic mucosa with ulcer and chronic active inflammation, see CommentB. Rectum, biopsy:
– Colonic mucosa with ulcer and chronic active inflammation, see CommentComment
The biopsy shows multiple fragments of inflamed granulation tissue and inflammatory exudates consistent with ulcer base. The adjacent colonic mucosa shows crypt architectural distortion, edema and increased inflammatory cells in the lamina propria. Given the clinical history of recent radiation, the findings may suggest radiation colitis. However, the biopsy is superficial, the typical histologic feature of radiation colitis, such as submucosal vascular changes are not seen. The other differential diagnosis includes infectious colitis. Immunostain and special stain will be performed to rule out fungal and viral infection, results to follow in addendum. The clinical history of allogenic bone marrow transplant is noted, but increased apoptotic bodies, the sine qua non of graft versus host disease (GVHD) are absent.
…and so we’re still waiting to see how Kaiser-Permanente Oncology and Gastroenterology wishes to treat my colitis. I have my labs drawn several times each week as they monitor my Complete Blood Count (CBC) with Differential. White Blood Cell (WBC), Red Blood Cell (RBC), Hemacrit, Platelets, and Absolute Neutrophil Count (ANC) are the numbers they are most interested in… and they rise and fall quickly each week. I’ve lost track now of how many irradiated whole blood and platelet transfusions I’ve received now, but I know it’s numbered in the dozens.
While we try to get a handle on my mantle cell lymphoma, lymphedema, and colitis, I began getting a severe cold and congestion last week. Getting pneumonia as an immunocompromised cancer patient is a guaranteed long hospital stay. I was doing my best to avoid hospitalization. Thankfully my wife and our Kaiser internist agreed that with my history of Levaquin, it was likely not a bacterial cold or flu but a viral, and being congestive/respiratory, using an Advair Inhaler for the next 30 days would probably be the best way of clearing it. I’m thankful to say that while I’m still phlegmy and congested, I’m able to breathe better and it has slowly been getting better.
I am still employed by Sophos, and I’m incredibly thankful to everyone (my team of co-workers, management, and human resources) for their kindness, compassion, and support during my ordeal. I’ve been on Long Term Disability (LTD) since mid-November beginning with my hospitalization and Seattle cancer care. I’m hoping once Kaiser-Permanente is able to manage my cancer care again with some regularity, I can return to working 32 hours/week from home. Once the colitis treatment begins and my chemotherapy settles, I think this is reasonable.
And so it goes. I’m hoping with the addition of 🤕 My Cancer Journal to the menu above and with my efforts to provide informational updates more regularly, people can follow my journey. I truly cannot thank you enough for the kindness, support, interest, advice, and everything. Truly, thank you!
That’s a lot to deal with but you are both doing so great at managing it. I’m hoping the cold gets better soon. Hang in there buddy!