A Bit of a Pickle

We are slowly clawing our way into spring. Today is very windy, but supposed to reach the mid 70s! Today, Charlie is racing in Bizarre, KS (love the name of that town), Richie is working away on his Mercedes transmission and I am resting in bed. 

Last week, Mom was visiting and on Monday we recieved news of the death of a friend. Bo was diagnosed with cancer of unknown origin about a year ago. He was a great guy, and lived a really full and happy life. This last year, he lived even bigger and better while fighting for his life. The news was devastating. It hits so close to home for me and mine. I feel so, so sad and quite terrified, to tell the truth. 

Bo was married to Carol, whom I had become close to this last year. We found common ground with each other, two moms trying to hold it together. She and her boys will be fine, I know, because we have this incredible community of friends here in Lawrence. We won’t let Carol and her boys down, and I know the same thing is happening for me and my family. 

I have been on the NIH protocol now for a month. Things seem to be going well. Generally, I am feeling good. I have had three treatments, then this past week I rested. I started showing signs of side effects with the third treatment and was able to manage those with no difficulties. After another three treatments, I will have additional tests done and then a week or so later, will have my reevaluation. If the cancer has grown more than 20% I will not be allowed to continue with the trial. 

This past Thursday, though, I found myself in a bit of a pickle. I had let myself get dehydrated, developed a bowel blockage and had to go to the hospital early Friday morning. I got relief and was released late Friday afternoon. I have been resting, drinking water and trying to eat a bit.  I made the decision this morning to cancel this weeks trip to the NIH. After speaking with the doctor on call, I decided that it just didn’t make any sense to push myself. I do not feel very well, my gut hurts quite a bit and I haven’t been able to eat much so I am weak. 

I will have more information about the study and how this afftects my participation when I talk with the nurse tomorrow. This is really the best choice for me, although I am still coming to terms with it. I am worried that it will cause me to be dropped from the study, but the doctor said they will work with me. It’s all very frustrating - trying to get well - and having a roadblock in the way. Sigh.

Otherwise, all else is well. Madeline is finishing up her first year away, she should be home sometime in early June. We are looking forward to having her around for the summer. Charlie will finish up his junior year in late May. I have hopes for a good and busy summer with my gang, but I also don’t usually plan that far ahead. I have today and am thankful for that. Tomorrow will bring whatever it brings.  

Thanks again for all the love, the prayers, the good energy and all the other little and big things you all have been doing for us. This summer, I will mark the sixth year of my diagnosis. I know that I am here still in large part because of the love and support from every single one of you. And I thank you again and again and again.

love,

Maggie