I am very thankful that Spring is almost here. Technically, we have another couple of days of winter, but today it is supposed to be in the 70s and I am going to just sit in the sun for a bit to soak up that vitamin D and revel in the warmth. The two most annoying side effects of the chemo right now are fatigue and the lack of hair on my body. The fatigue requires a lot of naps and sitting around, which is getting more and more boring as time goes by. The lack of hair means that I am cold all the time. Last night, Richie and I went to parent/teacher conferences for M at the high school. The building was freezing inside. And by the end of the evening I was shivering so badly I couldn't even walk to the car. Mr. Wonderful had to go get the car, turn on the heated seats and drive around to the doors to get me. Somewhere, somehow in this wonderful life, I did something right and was lucky enough to end up with a guy that I love and who is willing to do these kind of favors for me!!! How lucky I am!!!
We are getting ready to take a cancerless trip to the East Coast to visit colleges. Four years ago, when this crazy nightmare started, I wasn't sure I would make it to this place, but we ARE there and going to explore Bryn Mawr and Smith College with M. C is going with us, too. He's not too happy about it, but I think once we are on the road, he will change his tune and embrace the fun that is traveling with Richie. I am fun to travel with too, but a 14 year old boy is usually all about his dad and that's where C is right now. We hope to have time to spend a day in NYC and see an old friend, and then we'll drop south to the Tennessee Valley to take a southerly route home.
I decided to take a break from this round of chemo so that I would have more energy for this trek. And I do have more energy. It has led me to explore some new ideas regarding the future and my treatment options. I have been feeling lately that Dr. C doesn't have a plan for me. And I understand why. She says there is no literature or published studies that indicate how to move forward. I take a sweet delight in that. I have survived for almost four years with a stage three cancer that statistically sees most patients die during the 18-24 month period.
I have defied the odds!! Take that, you cancery bitch!!! (that's for you, Kak!)
But I also am not seeing an end to treatment. The chemo is holding me steady, but not causing the cancer to regress. And I am tired from the constant chemical attack on my body, mind and spirit.
So, after a long discussion with Richie, I have decided to do two things. First, I have made a call to the Mayo Clinic to initiate a review of my records with their staff. I should be hearing back sometime in the next week or two. I think it is time to have a new set of eyes and a new mind look at me, my treatment history and figure out if there is anything else that can be done to help me.
The second decision I have made is to talk with Dr. C about not only switching to another, less devastating chemo regimen, but to also look at mixing up the schedule. If I am to always be on some kind of chemotherapy, I want more control over how and when. I want to have regular breaks so that I can have some more quality time with Richie and with the kids. This short break has shown me that I need to have a chemo vacation every now and then if I am going to be able to deal with the effects on my body. The risks are great because the cancer could start growing or metastisize at any time. But I also feel like the chemo is slowly killing me. So, will the chemo or the cancer get me first? I know I have no control over that in the end, but I do have control over the now and today. And I going to take that control now.
I will never give up the hope that I can "beat this bitch" and have a life free of cancer. But I also want to live now. I want to have the energy for trips like this one we are going to take, to work in the garden, to take a long walk or bicycle ride. I want to have the energy to enjoy where I am right now! And that has become harder and harder to do. So, wish me luck, send those prayers, shoot me some positive energy if you will. I think it's going to be a wonderful spring and summer. And I hope to have some hair on my body by next fall and winter so that I don't have to spend every day hovering by the fire. But that hasn't been a bad place to be, either.
Thanks for all the help and love, we feel it.