Feel free to follow along my new challenging journey to kick cancer’s butt. I’m happy to have you seated next to me. If you haven’t already, one of the best ways to do so is to head to www.nikkisnewlungs.org and enter your email address to receive all the updates. It’s going to be a rough ride if you choose to join so strap on your seat belts!
Wow, has it been a whirlwind but we’re all set to start my anal cancer treatment on March 20th! I’m not your “average” cancer patient since I have CF, had a lung transplant, and have a history of blood clots which affects delivery methods for my treatments and even pre-treatment planning. There are a whole bunch of different variables that needed to get organized. It took multiple practicioners days and weeks to coordinate it all. I truly have the most incredible doctors, nurses, techs, administrative staff, friends, and family included in my care. I love my village!
We were told in 2010 when I went through the transplant evaluation for my lungs that I would be highly immuno-compromised afterwards and one of the outcomes would probably be cancer. It wasn’t a matter of if, it was a matter of when we would catch it. I’m extremely grateful it took nine and a half years for this to appear.
We met with the radiation oncologist on March 1st. The biggest shocker was to learn that due to the nature of where the radiation will be administered, it will force me into full menopause by the third day! It was bound to happen some day so bring on the hot flashes with everything else!
We really didn’t know the extent of the cancer, have the complete understanding of the results, or the treatment plan until that morning. The concern we all had was if the cancer had spread beyond the local area. It’s common for it to travel to the lymph nodes in the groin, which it did in my case, but the hopes were that the cancer stayed localized and thank goodness it did!
We heard how awful it most likely will become near the end of my ~34 days of treatment; horrendous flaming diarrhea, burning while peeing, severe dehydration, I may need to be hospitalized, 2nd degree burns, blistering, and peeling in the entire region down there. In some extreme cases, some areas could fuse together – YIKES! I believe that’s rare and it sounds terrible, but I would rather hear the possible “side effects” now than wa-bam, be surprised later! Oh, it will likely linger for a few months after treatment is finished too.
Once we arrived home from the information overload, I lost it. I broke down in tears. It all became real.
Next up was my chemo doctor appointment on March 3rd. After hearing two days prior how the bad diarrhea would wait to set in from the RADIATION around the 3rd or 4th week, he disclosed that after day 1 of CHEMOTHERAPY, diarrhea hits you hard! Maybe he meant soft, but I was rattled. He said most of his patients have mentioned by the end of the 2nd week or beginning of the 3rd week it finally subsides. How convenient that’s about the same time the radiation ignites it’s own arsenal of aforementioned flaming bowel movements?
To enable my body to fight the cancer better, I also need to cut one of my anti-rejection meds for my lungs. That seems super scary to me but the fact I’m so many years post transplant is a positive thing. If all this had happened immediately after surgery, this would be a whole different story. Were going to keep a closer eye on my lung function with monthly tests.
With all this going on, my blood work decided to get a little out of wack. I seriously wondered what else was going to be thrown at me? I always do a good job keeping hydrated but apparently I started becoming an overachiever. I was told to limit my intake to sixty ounces per day for ALL fluids I had. Fortunately, my blood level results were back to normal yesterday!
All this doesn’t sound pleasant but I am focusing on the fact the radiation oncologist used a bold word, cure. It’s a squamous cell carcinoma and those are generally more treatable if caught early enough. She said it’s going to be difficult but they will get me through this. She also mentioned the likelihood of all this returning is low. There is bad, but there is a lot of good to think about.
Please don’t be offended if you have responded to a post or sent a message and I haven’t responded to them. I see them all and appreciate every single one of them! I have had a lot going on recovering from a painful surgery in January and numerous appointments preparing for the next challenge both physically and mentally. Thank you so much for all the well wishes, support, smiles, and prayers. I believe in the power of all of them, I can’t thank you enough!!!
Nikki's New Lungs 