That fuzzy little rat looking thing named Phil in Pennsylvania told us we will see an early spring. One can only hope, considering he has only been correct 39% of the time with his predictions I’m not sure how much stock I want to put into him.
Training is training. It’s eh, not the best I have had so far. Between my kids and myself, the colds, ear infections, strep throat, sinus infections and a bone fracture, it’s been a tricky few months. Oh and my bad reaction to an anti-anxiety medicine. That was fun for everyone!
After running Newport last October, I sat down with my mother and husband, my running support, and told them I really needed to make running a priority if I was going to run Boston again. As much as we have tried to make it work, it’s difficult. I would love to be able to train and run Boston every year, knowing that isn’t realistic, I was hoping to run 10. This year will be 9. I don’t know if I will make it to 10. My mother thinks I should give up marathon running altogether. She doesn’t feel it’s healthy for me. A few days ago she asked if I could defer to next’s years race. I can’t. You drop out and you lose all you have put into it. I’m out a substantial race fee and I would still be responsible for the charity minimum to Dana Farber. And to be honest, I don’t want to drop out. I feel like a failure in so many facets of life, some beyond my control, but none the less the feelings are there and it’s just another thing in my life to feel bad about. Alas, I’m here right now and I’m planning on toeing the line in April. Who even knows what next April will bring.
I have been on a clinical trail since last May. There is so much involved in clinical trials from every angle. From my end it means, being in Dana a lot, more than I would on a standard regimen. The two medicines I am taking cause the same side effects so there are some issues that need to be resolved by putting off treatment until labs are back in a “normal healthy” range or dose reducing medicines to keep my body from going completely out of whack. The two most tricky areas for me have been platelet counts and liver enzymes. It took some time, but my team seems to have found a nice balance for me. I have been what I describe as “under a microscope” every week. There was a two month span when I was in Dana weekly for labs, a quick check, medicine and Dr.’s appointments. And it has been exhausting all on it’s own. Throw my young family into the mix and it’s a nearly impossible balancing act. I do the best I can, I really do. I keep up with running as much as I can. Long runs can be tough to schedule. Ideally, I would love to be able do my long runs every Friday or Saturday morning as I have done for years, but that doesn’t always work. So I fit them in when I can. It’s been a cold start to the new year, so I have been indoors on a treadmill more than I would like. I can’t run outside when it’s icy out. Before cancer (BC) I never liked running on ice and I can’t now due to risk of fall and fracture.
I had some back and chest aches in recent months that have worried me. My children and I have passed around a cold for nearly 6 weeks. Colds and seasonal illnesses are tough enough when you don’t have a compromised immune system, but there can be more complications when you do. I was coughing so hard at one point that I believe it’s what caused a fracture in my original bone met, hence the pain I have been in. But let me back up a bit….
Last November my family and I were gifted a trip to Myrtle Beach by an incredible Foundation, The Karen Wellington Foundation, www.karenwellingtonfoundation.org, Everyone was so nice and helpful and just wanted us to get away from the stress of cancer. They were the first foundation to ever tell me I was qualified for anything. I have signed up through my Dana Farber social worker for help with anything. I never qualified for anything. Most places never reached out or offered anything, not even emotional support. The only contact I had from one of them was to ask me for a donation. As you might imagine it can be frustrating and isolating. The Karen Wellington Foundation did just the opposite. They were the first place that made my family and I feel like we mattered. It’s bad enough living with cancer forever, but hearing over and over again, “you don’t qualify” or “that’s not for people like you” is painful. So, Thank you KWF for all you have done for my family.
Our trip started off very nicely. It was the girls’ first time flying and they were both ACES! I think I was more of a wreck than anyone. Mike and I decided to drive down to Savannah, GA for a couple of days since we were so close. It was supposed to be a fun couple of days seeing the beauty of the south. The day we drove down i started feeling really bad, achey and sick. When we finally reached Savannah, I sent Mike and the girls off and jumped into bed. I was in PAIN! I had a quick bite, loaded up on Advil and attempted to go back to sleep. Well, that night the Savannah DPW decided it was time to repave the road right outside our hotel room. We tried to change rooms, but the hotel was completely booked up. I was in so much pain the next day that I called my Oncologist and she looked up a hospital in the area and told me to go to the ER. So, I did. Unfortunately, we knew no one down there so the kids ended up there with us…all day! I felt so bad for taking up a whole day when they should have been having fun to wait with me in the ER. The two Dr.s who came in and took care of me couldn’t have been nicer. When I have to explain my medical history over the past 4 years, I find Dr’s look at me, read a report, look at me again and can’t believe their eyes. I just look at them and say, I know I’m a walking miracle, because I am. Mike pulled up my recent scan results and I went over everything with them. My Oncologist had me request a few specific blood tests and told me they would most likely be looking for a blood clot based on the amount of traveling I had done in the past 4 days. Because I had super low platelets at the time, it was highly unlikely, but I am an anomaly so I didn’t rule it out. After 6 hours and a slew of tests they did give me some pain meds, told me I was okay to leave and sent me on my way. I was thankful for their help. I can say University Hospital in Savannah, GA is a great hospital to go to if you should need their services. The rest of our trip went smoothly and we enjoyed it. I only wished we had more time. I want to go back soon!
Six days later I was in the Brigham for my routine scans. Everything was stable and my pain was moving and subsiding somewhat. I was getting overanxious over nothing and getting shaky and agitated easily. I thought it was the coffee I drink, but I have been drinking coffee for years and never had a reaction like this. It took my mother to say I think it’s the anti-anxiety medicine they gave you. Well, I stopped taking it and the agitation and shaking stopped. I was dumbfounded. You hear about people having adverse reactions to medicines, but this was ridiculous and not anything I expected. So we figured out that it wasn’t helping me at all! It can cause muscle rigidity which I was also experiencing.
We made it through the holidays, welcomed my new niece, Josephine, and enjoyed a beautiful family wedding on New Year’s Eve. Mike and I were able to get away to Key West for a few days to celebrate out 10 year anniversary. It was really nice to go back there, our little oasis. When we got back, life rolled on. Colds, Dr’s visits, you name it we dealt with it. On a good note, I had scans this past week and everything is stable. The not so good news was that I have a fracture in my manubrium and while I was getting e infusion Mike received a phone call to say he’d been laid off. Talk about timing! I thought 2018 was one of the worst years of my life. I know it was a trying year for a lot of people. I was really hoping to start 2019 with a better start. Hopefully, the year will improve. Because of the bone fracture I started a new medicine to help strengthen my bones, the big downside, I was told I would have flu-like symptoms for up to 3 days. Well, as expected, I was completely down for 2 days. I couldn’t move the next day. It was horrible and certainly not how anyone wants to feel ever! Supposedly, subsequent infusions don’t evoke the flu-like symptoms, but if they do, then I will not be on this medicine for long. I’m hoping to feel better enough tomorrow to get my butt in gear and get out the door for some much needed milage.
I believe in research and finding cures and better treatments for cancer. There is not a cure all for cancer. In Breast Cancer alone, there are different subtypes which are treated or “cured” vastly different. Genetics plays a big role, bigger than people realize. Most literature would have you believe that 10% of cancer is genetic. More and more research shows just the opposite, genetics play a pivotal role in cancer and cancer management and care. I am making my contribution where I can. Who knows, the clinical trial I am on may be the answer for future cancer patients. I believe basic research is one of the most important tools we have. As long as I’m here, I will do what I can to keep researchers looking for answers. They are my heros for that reason.
Please, if for no other reason than you have been touched by cancer, help support Dana Farber and the Claudia Adams Barr fund. I can’t possibly thank those who have supported me enough. Your support, love and friendship mean more to me than anything.
If you want to help, find out more and donate, please visit http://danafarber.jimmyfund.org/goto/Katiec
Thank you for taking time to read my updates.