Tuesday, August 20,2013

It’s been a crazy week with a flurry of activity. Last Wednesday I was at the hospital for a CT Simulation. This is where you lie in the table and they build a mask around your head to keep it in place while they do the radiation to prevent the beam from hitting other areas (eyes, glands, etc) which can cause problems. Good thing I don’t have panic attacks because once the mask is in place you’re glued to the table. Now imagine not being able to move and having the knowledge that they are zapping your brain. Get the picture???? I just go to my happy place with furry little kitties to keep my mind off things. Once the mask is made and you’re in place they take a CT Scan of your brain to determine where the radiation should be pointed. I was told it would take approximately ten days for them to develop a treatment plan before I could start the treatments. In the mean time that afternoon my doctors nurse called me to see what was going on with radiation and if I had started yet. It took everything I had to tell her that she worked at the hospital and if she looked in the computer she could get all the information she needed. Since I like her I gave her an update on that mornings visit. The next words out of her mouth was that she was canceling my chemo treatment for the following week. Why I asked – because I can’t have chemo and radiation at the same time (which I knew). I explained to her that at that moment I didn’t have a radiation schedule and wasn’t sure when they would contact me to set up a schedule. I didn’t want to go not having chemo for three weeks, plus three weeks of radiation plus and lag time waiting for them to contact me. To me it seems a little silly to attack the brain tumors while everything else is not being treated and having the chance of it growing in another area. Her response was she would keep the appointment and it probably was a good thing since if you miss 42 days between treatments you get thrown off the study. Let’s think about this for a minute, three weeks since my last chemo (21 days) plus three weeks of radiation (21 days) plus any lag time – looks like I was going to be thrown off if I didn’t insist on having chemo tomorrow. My question is why I had to figure this out and they didn’t?? As Murphy’s Law would have it of course I got a call the next day from the radiation scheduler telling me that my plan was complete and I could start radiation the following Monday. I explained to her that I had chemo that week that I couldn’t miss since I was on a study and didn’t want to be dropped since it paid for my treatments. After conferring with the doctor it was agreed I would start radiation on Monday, August 26. Should be a no brainer from there you would think until I was told that the times they had open were 10:45AM or 2:30PM. All along I had told the Radiation Oncologist that I worked full time and my office was two hours from the hospital. I needed an early morning appointment which would allow me to get to the hospital, have the treatment and get on the road before rush hour traffic. I was assured this would not be a problem. I explained this to the scheduler who told me that she would have to call me back. It wasn’t until Monday that I received a call back telling me that they could schedule me for 4:00PM. This would mean I would have to leave my office by 2:00PM to get to the hospital and then turn around and drive another two hours in rush hour traffic to get home. Maybe if it was one treatment but it wasn’t going to work for three weeks. I tried again to explain to her that if I don’t work I don’t have insurance and if I don’t have insurance they don’t get paid. I was told that the in-patient have priority over out-patients for morning appointments. This really makes sense since they are at the hospital all day and just need to be wheeled downstairs for treatments. After going back and forth and my threatening to go to another hospital she said she would have her supervisor call me. As most of you know I’m not one to sit around and wait so I immediately emailed my doctor advising him of the situation and asking if “maybe I should look at another hospital that is more convenient for me” as well as bringing up the fact that I was diagnosed June 7 with these tumors and two months later I still see no sense of urgency on their end. Is wasn’t more than 15 minutes I had an email back saying he would look into it and within the hour I had a phone call from his nurse informing me that I was scheduled for 7:30AM for my treatments. So besides keeping you updated on the current activities I hope I have shown that you have to be the driver of your own destiny. I could have easily excepted their plans and not said a word knowing it wasn’t in my best interest. Instead I stood up for myself and until they gave me a very good reason of why what I wanted wasn’t going to work I didn’t except their answers. Unfortunately I see and hear a lot of patients blindly going along with what they are told without questioning why. If you have learned anything about my experiences it should be to stand up for yourself. Enough of the soapbox – hopefully chemo tomorrow will go off with no issues. One can hope! I’ll let you know next week how things are going. Keep on Dancin”

Thursday, August 8, 2013

It’s amazing how fast things could change in four weeks. I went from the brain tumors being stable and not attached to the brain to last weeks phone call saying one of the two was now believed to be attached to the brain to yesterday’s appointment with the Radiation Oncologist telling me I now had four tumors which are growing in the brain. The verdict is full brain radiation everyday for three weeks.


What is most maddening about this whole scenario is waffling back and forth to the lack of sense of urgency. This has been going on for two months now and it will probably take another 2-3 weeks before I even start radiation. Next week I go in for a CT Simulation which is where they position you on the table and do a scan so they can make sure that they only radiate the brain area and no other areas (eyes, mouth, etc). They then make a mask that forms to my head and is attached to the table to prevent any movement during the treatments. If you look back in my blog to three years ago I actually have pictures of me on the table wearing my mask.

No chemo while I’m having the radiation which shouldn’t be a problem since I have it every three weeks anyway.

Of course they have to give you the whole disclaimer of side effects – memory loss, hair loss and burns being the main ones. One slip and they can turn you into a veggie. Of course I’d like to be a green bean – tall and skinny although green isn’t my favorite color.

I’ll keep you updated as this new adventure begins.

Keep on Dancin’

Thursday, August 1, 2014

Just when you think it was safe to let your guard down something comes and hits you between the eyes like an icy snowball on a cold bitter day.

After getting a very positive report from the Neurology Oncologist who (and I quote) said “this is a good report, you’re practically perfect” I get a call Monday morning from my Oncologist (a week and a half later after getting this news) who tells me they (the tumor board that consists of a Neurology Oncologist, Radiation Oncologist, Surgeon, Pathologist, etc) reevaluated my brain MRI and now they feel that one of the tumors is in the brain.  I need to go see the Radiation Oncologist for evaluation.  Of course it’s taking over a week to get in to see him even with my Oncologist making the appointment.  This is going on for almost 2 months and I see no sense of urgency which is frustrating.  In the mean time I have something on my brain that doesn’t belong there. 

Not only does this news bring more visits to the hospital and probably radiation treatments, but will upset my chemo schedule since radiation + chemo = burning a hole in your brain (like I need anymore).  My doctor is talking about putting me on another study with another chemo but I have strong feelings that if the chemo I’m on has been working why change now.  Hopefully the radiation will destroy the brain tumor (without destroying anything else up there) and I could go back and resume the same chemo.

I have an appointment for next Wednesday morning with the Radiation Oncologist so after that meeting I’ll know more and what my options are with treatments.

I’ll update you more after  my appointment next week.

Keep on Dancin”