I will skip all the details but to tell you the last week at our house has been insane. I wish cancer patients and their families could get a pass from the everyday dramas and traumas of family life. Sometimes I feel for people and wish they could just get a day, a taste, of what life on the edge is like. If cancer has given me one thing, it is perspective.
Cancer patients are people too but everything else is either amplified or we don’t take the other ‘stuff’ of life as seriously as we used to. Things are late or forgotten, or we just can’t do it. It’s not personal.
But through it all we are truly blessed to be surrounded by so many caring, well-meaning people. I’ve been asked for advice on what to say or do for cancer patients and really the absolute best thing, no matter what, is to say I Love You and to listen. Cancer has given me the insight (not focusing on the things it’s taken – MOVING ON!) to see through all the misfires and well-intentioned bobbles.
Just like regular people, cancer patients and their families sometimes don’t want to be cheered up or bombarded. Sometime we just need some time alone or someone to listen. Saying nothing is pretty bad. Well, next to what I heard at my high school reunion but I’ve already told that story. I’ve been at this long enough to know when to ask for help and the white surrender flag was flying high yesterday. Our friends pulled us through the again. Thank you!!
Many kudos go to my Dr and his team at Vanderbilt for getting me on the clinical trial. I still don’t know how they did it – I think the prayers were a big part of it. The timing for everything was perfect. I started yesterday with my first dose exactly 4 weeks after my last dose of my other treatment (minimum requirement). Amazing. And ten minutes from my house. The timing for getting into these trials is such a tricky thing. There are only a limited number of spots and there was the chance of being assigned chemo. All while my cancer is growing. Honestly the chances that the chemo would’ve worked are so slim and I was shocked, just shocked, to get the study drug. I picture the drug in there, already doing it’s magic and helping my body to tear Roscoe apart. For good.
It was a multi-hour affair – labs, checkup, EKG, drug infusion, another EKG, more blood work. Somewhere Dracula is sated today. Then I went to the choir/band concert at school. I feel fine today, just extra tired. I go back in 3 weeks for another infusion and I will have scans 12 weeks from now to see if it’s working. Seriously though, if it isn’t, I’ll probably know before then. I have a friend who is such an inspiration (GO SUE!) who has been on the same type of drug from another company for a year and a half. She is kicking Mel’s butt. I think this is going to work for me. It has to. It was just too darn easy to get on this trial and get the drug where things have not gone smoothly the past year for me. Not smoothly at all.
Three weeks ago I already had my records ready and I was ready to march right out of Vanderbilt after my appointment and head to a much bigger melanoma center but my Doc convinced me to stay. I’m so glad I did. They will do their best, I know they will.
Much to Alan’s consternation my general motto has been “How will I know what I can do until I’ve overdone it”. After I got home from my lymph node dissection and was learning how to walk again I was pretty loaded up on pain killers and walked the 20 stairs down to our patio area. There I got stuck as I could not climb the stairs and get back up. What did I care? He gets frustrated with me sometimes.
Apparently when my heart is ailing with cancer and I’m trying to taper off steroids and the honeysuckle is taunting me by smacking the top of the car in the driveway, all this combined with a hedge trimmer can land me in the ER. My doctors and nurses really do not like me in the ER. So I’ve been ordered to rest and take it easy and give this drug and my body a chance to fight. So I will do my best and probably miss a few things. The long-term goal being to stick around for a long time and be well. (ARE YOU READING THIS – I heard you Debbie – I AM TRYING! It was the honeysuckle’s fault!) Finally though, Alan has relief that someone with a medical degree is telling me to cool it and he thinks I will comply. It is not easy, I don’t like acting like a patient and the roses are looking scraggly. Don’t even ask me about the remaining shrubbery. The horror.
I get to keep my ugly Zelboraf hair. It is so curly, at best it looks like a cross between Syndrome from “The Incredibles” and Phyllis Diller. I’m not sure how much of a bonus this is. So far no other symptoms except enough fatigue to keep me down, which is what they wanted out of me anyway. Go figure.
We all continue to put one foot in front of the other and pray for strength to trust in God’s will. I am thankful for today and for you all.
Peace – Amy