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Sep 20, 2016 Latest post:
Oct 23, 2017
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
My journey started with my annual mammogram in mid - May. I was diagnosed with Ductal Carcinoma in situ (DCIS) stage 0 breast cancer. In layman's terms this means a very small, very early spot of noninvasive breast cancer. I had a lumpectomy on June 2nd and another on June 10th to ensure clean margins. Cancer was now in the rear view mirror....at least so I thought!
After a 4 week healing break, I returned on July 7th, to the doctor to be fitted for radiation to reduce the risk of breast cancer returning in that breast. After a routine chest scan to check accurate placement of the radiation beam, and by fluke, they discovered a large mass in my left peritoneal cavity. I thought I had no symptoms, but the symptoms overlap with Celiac's disease symptoms (which I was diagnosed with in Dec. 2014). Because both celiac's and lymphoma are auto immune deficiency diseases, I had a higher chance of getting cancer because of my celiac's.
A pelvic and abdominal scan, PET scan and needle biopsy were performed the following week at North Memorial. At this point we knew 1) I had a cancer, most likely lymphoma 2) it was contained to the left abdominal cavity, 3) the mass was 11 * 13 centimeters covering my left kidney, aorta to stomach, adrenal glands and adrenal arteries. BUT, the pathologists at North Memorial said they couldn't accurately determine the exact type of cancer, so an incisional robotic laparoscopic biopsy was performed on July 22nd. There was a lot of bleeding, the surgery lasted 3 hours (twice as long as predicted) and I was awarded an overnight stay in the hospital and 2 miserable weeks of recovery. Yet, this procedure yielded no usable biopsy, so we were no closer to the final diagnosis. AND they wanted to poke me some more!
Our very good friend and neighbor for many years, is a well respected pathologist at Cornell University in New York City. At this point, he became very insistent that we get to Mayo in Rochester. To make a very long story short, we were seen within 6 days, the cancer was diagnosed from the original biopsy tissues on July 12th and treatment plan established at Mayo. I have Non-Hodgkin's lymphoma, large B cell cancer Stage 3. It is treatable and has a very high curability rate (70-80%). I am being treated with R-CHOP, which is very effective at destroying the higher stage lymphomas. The treatment is given once every 3 weeks and I will have a total of 6 treatments as long as the cancer responds well.
Treatment #1 was administered slowly through the night of August 9th and finished on the 10th. This was to watch and monitor my vitals as the meds can goof up the electrolytes / drop blood pressure. I was sailing through the first cycle with little more than fatigue as a side effect, until week 3 started and then my hair fell out and I became nuetropenic (the white blood cell count bottomed and I had virtually nothing to fight infection, so I stayed at home).
Treatment #2 was yesterday, August 30th. The white blood count had rebounded so I was able to have the treatment which lasted about 4 hours. The only side effect was from the Benadryl they give me as a precaution to allergic reaction, which puts me to sleep. I'm feeling good today. They put on a nuelasta one day patch which will release meds tonight to help prevent my white blood count from bottoming. This is an expensive drug at $5,000 per dose! I just saw the bill from the first chemo treatment and those meds alone cost about $9,000 per cycle. Thank goodness for medical insurance!
We go back on September 20th for a PET scan to see if the R-CHOP cocktail is working on the cancer. What the doctor hopes to see is a much reduced mass or no mass. Yesterday when he did his external exam of my abdomen, he couldn't feel the mass. Fingers Crossed!! If all stays on track, I will have my last treatment the week of Thanksgiving and then on to healing and life back to normal.
We do have an appointment this Friday 9/2 with Mayo's breast cancer team to ensure an accurate diagnosis and get a final plan of treatment for that area of my body. There is no connection between the breast cancer and the lymphoma. Pepe, our pathologist / neighbor, says the tiny breast cancer very well saved my life.