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12/1/2016 Latest post:
Welcome to my CaringBridge website. As much as I would like to talk with you all, Conrad and I thought this might be a more realistic way to keep all of our family and friends current with my progress. Thank you for taking the time out of your busy lives to take a moment to check in. Your support and well wishes are very much appreciated. And just so we are all starting on the same page, here is the Reader's Digest version of my journey with Non-Hodgkins lymphoma...
I was first diagnosed in 2011 with follicular lymphoma, a non-aggressive, slow growing lymphoma. The doctors's said that it was not typical to be diagnosed being only 43 years old. Fortunately, I was able to manage this disease with minimal interventions until the fall of 2015. It was at that time that I underwent 6 months of chemotherapy. When the pain from enlarged lymph nodes returned in May 2016, I soon learned that my non-aggressive cancer had transformed into an aggressive lymphoma, Diffuse Large B Cell lymphoma to be exact. It was June 2016 when I started another, more aggressive, chemotherapy regimen. Routine tests mid-therapy showed that this second round of chemotherapy was not as effective as my doctor had hoped for. It was at this time when I realized that my cancer is as stubborn as I am! Chemo was stopped and I began 5 weeks of proton therapy radiation. I completed radiation mid-September, with follow up tests showing "mixed results". The tumors did indeed shrink, but are not gone. It was at this time I was referred to the stem cell transplant team.
Two weeks ago I decided with my doctors that I would undergo an autologous stem cell transplant. What that means is this...they will collect my stem cells from my blood (this part has actually been done), wipe out my immune system with more radiation and chemo, and then infuse my stem cells back into me to kick start my immune system into action, in a cancer free environment. So with that said, the past 2 weeks have been a whirlwind of work up tests...blood, urine, echocardiogram, EKG, pulmonary function tests, medications and Apharesis (the process of collecting my stem cells, which is similar to dialysis). This was done this past week as an out patient, which has allowed me to be home for Thanksgiving. Which brings me to today.
I will be admitted to the hospital Tuesday, November 29th to begin radiation on the 30th. The goal is to wipe out my immune system, so I will undergo 5 rounds of radiation over 3 days, a day of chemo, a day of rest and then receive my stem cells back on December 5th. I expect to be in the hospital for about 3 weeks. I have done the math on this one, should be home by Christmas. My biggest risk is developing an infection while in the hospital since I will not have a well functioning immune system. I will be discharged when I start developing white blood cells again. Once discharged, I am told to anticipate two more months at home recovering, still vulnerable for developing an infection.
I am well equipped with books, puzzles, games, coloring books, and now this web page to keep me from dying of boredom. The unit does have a treadmill and stationary bike, so I plan to put those to good use. I even packed my yoga mat! Feel free to reach out with any questions that you may have. Please know that I am going into this with a strong mind and body. I have accepted this reality and am looking forward to putting this all behind me. Many thanks and much love to all of you who have been walking this walk with me thus far, now it is time for us to bring it across the finish line!
Wishing you all a peaceful and grateful holiday season. And remember to enjoy the little things, for one day you may look back and realize that they were the big things.