We met with my oncology team for the first time since radiation started. They were pretty happy with how radiation is going so far. A week after radiation ends they will scan my lungs to see if my cancer is growing. If not, I will get a break from treatments and be scanned again in 8 weeks. However, if the cancer has grown or spread then I will start chemo treatment once again. We're mainly looking at two regiments. No one knows which one will work better for me and one has harsher side effects than the other. I was originally leaning towards the chemo plan with less side-effects, but that one uses a medicne that is "black-boxed." That means the medicine has caused serious side-effects in some patients and is no longer available as a medicine for some types of cancers. Anyway, we still have some treatment decisions to make once my scan results are in.
Four to six weeks after radiation I will have a scan of my abdomen to make sure I have no new growth in that area. They can't scan any sooner because the surgery and radiation have caused inflammation that would make the scan impossible to read. I'm hoping that the radiation has killed any tumor cells that remained after my last surgery.
Dr. Janeway said that a Dana Farber tumor profiling program for pediatric patients should open up in a few weeks. This program will be running more tests on the tumors then the adult program so I am going to participate as a pediatric patient. The Dana Farber program will analyze my tumor differently than the University of Michigan program so I want to participate in both and gather as much information as possible. Hopefully, the information from these programs will help me choose the chemo treatment that will work the best.
Speaking of the University of Michy, we have a trip scheduled for February 13 and 14 to meet with Dr. Hammer and to sign paperwork necessary to join their tumor profiling program. This will be a quick trip because I don't want to miss too many days of radiation.
The night before the super bowl, I was praticing my tackling technique in case I got a call from the Pats when I felt a tug on my tummy. Now this happens a lot, especially when I am sitting or laying down because I'm not paying much attention to the fact that I have a tube coming out of my stomach. It's just not something I tend to think about! So as per usual I ignored it until I felt my shirt get a little wet... then I realized my tummy tube was on the floor a few feet away. Might I add in that this is not the first time I've tugged it out? Whoops! My parents were thrilled that we got to drive into Boston six days that week instead of the normal five. The Emergency Room doctors couldn't fit the same size tube back in so we downgraded, but personally I wish we could have just left it out. (Of course I would immediately regret that decision the next time I feel a migraine coming on! And it's really just so attractive...but seriously take it out.)
The weekend of November 6th I attended "girls weekend" with other cancer patients from the Jimm Fund clinic and we had professional pictures taken. Tonight was an unveiling of the portraits, and everyone looked absolutely gorgeous. There were men in fancy shmancy black suits that walked around offering hors d'ourvres and drinks. I got to see my Jimmy Fund friends who I don't see very often because we all live in different parts of the state (or in Lauren's case, Maine!) It was a lot of fun and I can't wait to see everyone again at Spring Training in March! :)
The photographer who did the picures was absolutely amazing. He captured the essence of each girl. He's a volunteer who's son had cancer and was cured at the Jimmy Fund. There were 25 portraits set up in a gallery and the girls and their parents and some famoly attended. The JF people did a great job making it something special to attend with drinks and food being served. The best part was seeing the girls all get together, sharing stories and smiles. Great event all around.
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