I had imagined this process of finding a new oncologist moving along a bit quicker but we have had some things come up that we didn't count on. Since my last post about the failed appointment with my local oncologist (one week ago), my Father-in-law had heart trouble and was admitted into the hospital late Saturday night. At first, we thought he'd get his medicine adjusted and be sent home. But then, his defibrillator went off in the hospital and a team of heart doctors decided that he needed open heart surgery. His other 2 sons flew into town and he had a successful quadruple bypass Thursday. I was just at the hospital visiting him and must say he is doing great for just 1 day of recovery.
Wednesday, I had an appointment with Doctor #1, the Neuro-Oncologist at Florida Hospital. (Thank you Barb for watching the kids) Unfortunately, none of the people that attended my appointment last week were available for this one. So, I asked a friend of mine to go with me, she is a cancer survivor who has lots of experience with this. As an added bonus, my brother-in-law, who is a doctor was able to walk over to my appointment, since it was at the same hospital my father-in-law was in. After speaking with Doctor #1 in person, I learned that he likes walks on the beach and picnics in the sand....OK, actually he claims to have had 1 and a half Histiocytosis patients not 2. I wanted to ask how he had half a patient but never had the chance. I will save that for the next time I see him. Over all, his bedside manner was very good and he seemed knowledgeable of Histiocytosis but has not done this particular treatment. He made it very clear that this is his passion and he would give me 100 percent and pointed out that they are in the top 5 in the nation for Neuro-oncology.
I am still looking forward to meeting Doctor #2 & 3 at MD Anderson. They said they have received my medical records and I am "under review". I get the impression that someone will call to set an appointment when the doctors decide who I should see. I left a message that I wanted someone who is willing to follow Dr. McClain's Treatment Protocol and that I was not looking for a second opinion or alternative treatment. In the mean time, Dr #1's office is setting up an MRI of my brain and spine. I will see a GI on Monday for a consult about my esophagus problems and a lumbar puncture should follow soon after.
I am already getting tired of all these appointments but we have so much we're trying juggle with the end of school and now Jimmie's health, its just been crazy. The kids will be done with school June 9th and I will be done after June 11th. So, it is winding down and this timing is actually fine. In fact, I like that I don't feel rushed and can make sure I am happy with the doctor and the facility that will do the treatment. Physically, I have been feeling more 'disoriented' and 'cloudy', if that makes since. Like most women and moms, I used to be able to multi-task all day long. Now I find it helps if I try to focus on one thing at a time and not rush (more like a man - just kidding guys). The hardest part is admitting to myself when I am stuck. This is what I call the moments when I stop in the middle of a task because I can't think about what I am supposed to be doing. The good thing about not feeling so good right now is that I welcome the tough road ahead more than I would if I was feeling fine.
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