I realize I haven't written since Christmas time, so for that I am sorry to all my followers who rely on these updates to keep abreast of our situation. In continuation of my last post, I was able to have my treatment, and I did have my follow-up at Mayo.
I really should have written at that time, because we did have good news. I had only had 3 rounds of the Folfox/Avastin/Xgeva combination, and the scans had shown continued improvement in liver and lymph lesions, with no new lesions viewed. As for the bones, the lesions had not changed in size and number since November. That was essentially great news, as they had previously been replicating so quickly. We took that as a win in this battle. We also spoke with the radiation oncologist, who stated that the lesions were still too great in size and number, but they would be available for pain control if needed or in the event the lesions continue to shrink, we could zap them. We have been continuing this regimen ever since, and I am currently on my 10th dose.
My regimen in treatment every 2 weeks. I go in on a Monday or Tuesday, have blood work, then infusion through my port at Roger Maris. I'm then fitted with a dose defuser pump that releases meds for the next 46 hours. I have the pump removed in Lisbon on the 3rd day and a Neulasta injection on the 4th day. The meds have come with their own set of problems. First off, I now have Medicare and Blue Cross Federal as insurances. Blue Cross was originally paying for the Avastin after some prodding by my doctor. Then when Medicare took over, they have been refusing payment as they deem the drug "experimental" although there is research evidence that it is working for me and has worked for others. Sanford is fighting it and appealing the cases, but in the meantime I need the drug, so I have been signing a waiver each time assuming responsibility if not paid by insurance, which is awful because I have TWO insurances, both courtesy of our federal government who encourages advancement in cancer care. My side effects have been different. My hair is returning nicely, but I have been experiencing increased neuropathy in my finger tips due to the cold sensitivity. It gets a little better toward the end of week 2, but then I'm back in treatment. I still have the sensitivity to eating cold for the first 5 days. My feet, eyes and nose are also sensitive to the cold. I sleep a lot the first week. I am usual tired the day of treatment, but wired that night. Then days 3 and 4, I'm very tired.
Despite treatment every other week, I have not been letting it take over my life. I've been living. We have had a great winter aside from the treatment and effects. In February, Alayna/Jeremy and Kids, Stacey, Tim/myself and Arya, went on a weekend trip to Disney World. We spent 14 hours at Magic Kingdom on Saturday, and we only made it through half the park. We spent 8 hours at Animal Kingdom on Sunday, and that was a little more relaxed. Some may say our kids were too young, but I don't believe that. The joy in their little faces and excitement in their words was pure magic to all us parents (and auntie) who went. As for a parent who may have a limited time with my child, or a parent who may have limited energy for these activities, it was a true blessing to take my daughter and have those memories with her. It went so well, that we've talked about making it an annual or bi-annual event. Next time maybe we'll convince Grandma and Grandpa O to come along. I did utilize a mobility scooter, and it was a lifesaver for me. I wouldn't have been able to do those all day treks without it. I did however unfortunately overhear a younger women comment to her significant other, a remark about people who "abuse" the scooters after looking directly at me. I was annoyed. When you see people like me who look healthy, think to yourself, there might be something deeper going on that requires assistance. Not all illnesses are visible, and pain is a very invisible disease.
Tim went on a snowmobiling trip to the Black Hills with my Dad and friends in early March. They had a great, mantastic time. I later in March flew to see Merri in Phoenix, Arizona. She's expecting her first baby, a girl, in May. We spent our time baby prepping and house hunting with her hubby. We caught a Royals preseason game which was a blast. I may not be a big Chiefs fan, but the KC in me stays "Royal". I just returned from a girls' weekend in the Minneapolis suburbs, as I cohosted Merri's baby shower with one of her girlfriends there. It was a blast as I was back with my main UND ladies crowd. We laughed a lot reminiscing about old times, and reflecting as we are all now married with children, or children on the way.
I've kept busy with local event planning that included Merri's shower, but also now my Dad's 60th Birthday party and our town's annual Quilt Bingo fundraiser. Stuff like that keeps me productive and in the now. When having cancer, one of the things the patient misses is productivity and contributing. I will continue to do anything I can to stay "useful".
I have one more treatment scheduled before we go back to Mayo for reassessment. My appointments in Rochester are April 26 and April 27. Please keep me and my family in your prayers (as you always do). We pray for stability at the very least, but even better, improvement.
Thank you all for your love and support: Stay Humble, Stay Healthy, Stay Helpful, Stay Happy
Jenny
No comments:
Post a Comment