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  • My husband was diagnosed in November, 2011 with stage 4B Mantle Cell Lymphoma (MCL) which is a rare and incurable lymphoma. It comprises about 3-6% of the NHL (Non-Hodgkins Lymphomas). The prognosis is poor with a median survival of 3 years although some studies now say it's approaching 6 years. MCL responds to chemo, initially, but inevitably relapses within 1-3 years and becomes more aggressive and harder to treat.

    There is no consensus for treatment. After much consternation, research, and soul-searching, we finally came to a decision and decided on a treatment plan. We had flown to Houston to meet with an oncologist at a center of excellence for this disease but we were not comfortable with the treatment plan offered there. We came back to Florida and met with our local oncologist . After quite a bit of discussion and questions, he agreed to administer the treatment plan that we wanted. Jimmy began his 1st chemo cycle in December, 2011 and after we hit the 2nd cycle we managed to get into a rhythm. He received chemo every 3 weeks, except for the one week when his white blood counts were way too low and the treatment was bumped back a week.

    I always accompanied Jimmy. He would get labs drawn, then we would meet with the doctor and if all was well, as it usually was, we would head to the infusion room and sit there for hours while the poisons poured into his veins, killing the bad cancer cells along with the good cells.

    Post-chemo, the nausea generally persisted for 7-10 days. Jimmy learned to endure the underlying nausea but it was a guessing game as to what he could or could not tolerate in the way of sustenance. Sometimes I can be a slow learner and I think with all the other chaos going on in my life with my ailing, elderly mom and sibling issues, it took me about 4 cycles before I finally realized that it was best not to cook for that week because I never knew what scents would set him off. That was fine by me..... and my son! I enjoyed the time out of the kitchen and we enjoyed eating out, and the break in routine.

    One evening, about 5 days post chemo, the three of us stopped by an Italian restaurant on Las Olas Blvd. The weather was delightful so we decided to dine al fresco. We were seated and perusing the menu and suddenly the restaurant door opened and wonderful aromas, a combination of garlic and onions, wafted towards us. Jimmy abruptly got up, apologized, insisted that I and my son stay there and enjoy dinner and he would return for us. It was just how it was. He couldn't handle the odor of certain foods. So while we enjoyed fine dining, he went down the road and was able to eat a Big Mac.

    After his 4th chemo cycle in March, Jimmy was scheduled for a PET scan. This would indicate to us whether the chemo was being effective. If nothing lit up, we knew we were on the right track...for now. The cancer is still there, microscopically, just lurking in the background and not enough cells floating around to light up on the scan.

    The PET scan came back negative. Everyone was congratulatory, and we were grateful, yet we knew it was a bittersweet triumph. A brief respite for the time being.The lymphoma would return, that was a given. But the idea was to buy some time and hope for some newer treatments that were being tested in clinical trials. There is a surprisingly good bit of research being done on this rare lymphoma.

    The 6th and final chemo cycle was completed in mid-April. We left the infusion center and many of our "chemo buddies" congratulated us and wished us luck. Beth, our favorite nurse, hugged us but we reminded her that Jimmy would be there bi-monthly for 2 years of maintenance chemo, Rituxan.

    In early May, we flew to NYC. My husband had a workshop scheduled and we extended our trip in order to accommodate an appointment with a specialist at Weill-Cornell. He was a renowned Mantle Cell expert. I had been "following him" on the internet. Other names were bandied around on the online discussion group that I belonged to, but this Dr appealed to me. I felt he shared the same philosophy that we had.

    We needed a specialist for when the relapse occurs. We needed someone who understood the disease, it's nuances, and would be able to get Jimmy quickly into the appropriate clinical trial when the time occurred.

    Our appointment went smoothly. We were taken in on time. The staff was friendly and responsive. The nurse took a detailed history and then shortly after that we met the doctor. He was affable yet professional and spent a great length of time with us. Questioning my husband, talking/listening to me and my concerns, and then examining my husband. I could see he put my husband at ease and spoke to him on a level that was not over his head with medical jargon.

    He didn't seem to have a one-size-fits all outlook to his patients. He felt that the path we chose was well-founded and his focus was all about survival.

    The one thing that resonated with us both was how he described this disease. He told us to look at MCL as a hitchhiker. Along the way we picked up a hitchhiker but managed to lock him in the trunk.The goal was to keep him in the trunk. Sometimes he may get out of the trunk, and into the backseat, but we needed to keep on top of it so that he didn't get in the front seat and grab control of the steering wheel.

    It's an analogy that really describes this monstrous disease rather well. It IS always there. Every cough, every sneeze, every ache, every pain makes us look long and hard and wonder, is the hitchhiker opening the trunk?
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