Monday, July 22, 2013

Friday started out very early with a 7AM Brain MRI at the hospital. I was the first patient in and thankfully everything went well and the machine didn’t go down. Only minor issue was the tech who for some reason wouldn’t listen to me when it came to putting in the needle for contrast. Note to my healthcare professional friends – listen to your patients! We are not trying to tell you how to do your job. We are trying to tell you what has worked in the past to help you. The contrast (this is what lights up the cancer cells so the can see and measure them accurately) they use for an MRI is injected via a syringe so a typical IV is not needed. With my past MRI’s it was found that using a “butterfly” and injecting it into one of the veins in my hands was most successful. I mentioned this to the tech who decided he would rather use and IV needle and put it in my arm. OK, since he has the needle he’s the boss so I let him do it his way. After several attends he says, “maybe I’ll try putting it in your hand using a butterfly since it looks like you have good veins popping up”. He actually said this with a straight face like it was his idea. Again, he had the needle in his hand so I wasn’t about to argue with him.

After the MRI we headed up to see the Neurology Oncologist for the results. After waiting 45 minutes “Larry and Curly” (his residents) came in to “practice” on me and let me know Dr. K was measuring the results of the MRI but everything looked the same. Once he was finished he joined us and confirmed that the tumors had not changed and remained stable. It was his guess that they were there before I started the chemo trial and were being held in check by the chemo. His recommendation was not to do any treatments (i.e. radiation) and to watch them.

To those of you who have been following my progress with this issue may be a little confused with them going back and forth on treatments. Originally I was told that in order for chemo to work on the brain they would have to drill a hole in my skull and put in a port so that the chemo went directly to the tumors on the brain. Chemo isn’t effective when the tumors are directly on the brain due to the brain blood barrier which acts like a fortress to keep toxics from attacking the brain. My tumors are between the protective skin that covers the brain and the skull which allows the chemo to get to them. I know – too much info but take a step back and it’s really quite interesting.

The rest of the appointment was spent with him doing another neurology exam so he could demonstrate to the residents on how to perform the test. Unfortunately for them I have a very good memory and was answering his questions before he asked them which he found amusing. He once again confirmed that I was crazy and passed the testing with flying colors.

So it’s a wait and see situation. Good news is that it’s not growing – bad news is that I still have something up there that doesn’t belong. Small steps……..

Thanks for all of you hanging in there with me.

Keep on Dancin’

Monday, July 1, 2013

It’s been a crazy few weeks. Went to see a Neurology Oncologist to review MRI and determine treatment plan. The afternoon before I received a call from his nurse who informed me he may want to do a spinal tap so I should have someone with me to drive me home. Met the next morning with this new doc and I have to say I really like this guy. He’s around my age and very down to earth. He doesn’t fit the typical U of C physician type (i.e. no shirt and tie – instead a golf shirt, sense of humor). He put me through a regiment of verbal and physical exercised and pronounced me crazy. What was really interesting was that he showed me the MRI and explained it in detail. If it wasn’t for the fact that this was so serious it would have been fun.

For some reason where the tumors are (front lobe) and the shadow they cast on the MRI he wasn’t sure if they were attached to the brain or the scalp so he had to do a spinal tap. They got me ready and on with the show. I have to give Mark a lot of credit. They allowed him to stay in the room and watch as long as he didn’t pass out (too much paperwork to do on family members taking a nose dive). After about what seemed like an eternity and several needles he still couldn’t get to the spinal sac and decided to stop. I needed to be scheduled to have it done in surgery where they could use a fluoroscope to aid the needle down the spine into the sac. (did I mention that the needle are about 12 inched + long and the go through your back inside your spinal column until they hit the sac?) This was a Friday ( or yadirf which was one of the verbal tests I have given) and I was scheduled for the following Tuesday for another attempt.

We arrived at the hospital early Tuesday morning for another fun filled day. As mentioned in past postings this new hospital is amazing. Waited once again in the “Sky Lobby” with our beeper until they were ready to personally escort us down to pre-op. Got into one of those glamorous hospital gowns and hooked up to an IV and was ready to rock and roll. The doctor who performed the procedure was a Fellow and from my calculations was about 31 yrs old. He listened to my concerns about how local anesthesia and I aren’t always on the same page and assured me he would go slow and make sure the area was numb before proceeding. Again, I was very pleased with him and his team. They were very compassionate and friendly. Their biggest concern was my comfort throughout the procedure. Again it took several insertions of needle to locate the sac despite using the fluoroscope (by that point between Friday and that day I was beginning to feel like a pin cushion). You would think it would have been easy going from this point but NO, for some reason the fluid didn’t want to come out. It took almost an hour of body contortions as well as tipping the table to get 9cc’s of fluid. After a spinal tap you have to lie on your back for 6-8 hours or you could get a severe migraine. Because he had to insert the needle several time and the difficulty of getting the fluid out the doc told me my chances of getting a migraine was way up. Down in post-op they had me lying on my back for about 2 hours before they sent me home. I spent the rest of the day flat on my back drinking Coke (because of the caffeine which is another preventative) to avoid any complications. By the next morning I was up and back to my old routine with no headache.

You would think that would be the end of the story but by Thursday I knew something was up. I woke up vertigo and just feeling lousy. Unfortunately I had a lot going on and didn’t have the luxury of lying in bed all day. For the next five days I felt horrible. Between the vertigo and just being tired I was barely able to function. Plus I had chemo that Wednesday adding to the mix. I spent the whole weekend in the recliner with my eyes closed. Due to the steroids which increase your chances of infections, I felt a bladder infection coming on so I got a script from the doc for and an anti-biotic. Had it filled and a major drugstore (who advertises they catch drug interactions). It wasn’t more then 30 minutes after taking one I knew something was wrong. The next thing I knew both calves and feet started to cramp. My feet were so cramped they were actually twisted and started to curl. I was so thankful Mark was home and spent the next three hours massaging them to relieve the cramping. It wasn’t until 1:30AM that I was able to drink enough water to flush the drug out of my system. I didn’t sleep that night for fear I’d be waken up with more cramps. It wasn’t until the next morning that I found out that this drug and steroids should not be taken together and could cause tendon rupture. Did I mention I had both filled at the same pharmacy????? I don’t think it was until this past Friday that I finely feel back to normal.

Results of the spinal tap shows no cancer cells in the fluid. This translate that the tumors have not attached to the brain but the scalp. Believe it or not they sure are not certain how the course of treatment. I am not having the usual symptoms the normally see (blurred vision, dizziness, difficulty walking straight, etc). They actually discussed my case at a Neurology Conference and between what they saw on the MRI, the spinal results and how I present they couldn’t come to a decision. Originally they thought targeted radiation which is what I had last time but for these it is not an option (yet). Another option was to drill a hole in my head (like I need more) and put a port so the chemo goes straight to the brain. After further discussions with the doctors we decided to wait until July 19 and have another MRI before a course of treatment is selected.

So until then I know nothing more then I have two things stuck inside my head that I want OUT!

Otherwise my life has been boring and uneventful. LOL

I’ll let you all know as soon as I know something.

Keeping a positive attitude in my new dancin’ shoes.

Keep on Dancin”