Johnny Cash: “I got Stripes”

Johnny Cash: “I got Stripes”

Cut 14 from his Folsom Prison album:

“On a Monday I was arrested”;
“On a Tuesday they locked me in the jail”;
“On a Wednesday my trial was attested”;
“On a Thursday they said guilty and the judges gavel fell”.

Yes, it’s me. It’s 4:00 Saturday morning. I’ve been trying to figure out how to write this post since Monday. For some reason this song caught in my head sometime during the night and wouldn’t turn loose. So I guess I will have to try and run with it. Like some of my other posts I’m not exactly sure where this will wind up.

To refresh: (as much for me as for you)

The cancer presented with a seizure on Fathers Day. Two weeks later they had removed the part of the tumor they could, biopsied it and given the bad news diagnosis. A week later I was in initial treatment consisting of daily radiation for 6-weeks in conjunction with taking an oral chemo-drug called Temodar. The goal of treatment for terminal brain cancer is to extend the inevitable by trying to slow the growth. They treat with the tools they have. Every 8-12 weeks they take a comparative reading via an MRI of the brain to give them a read on the success of the treatment. At the first 8-week mark they did an MRI. The hope was that the treatment would hold tumor growth within a 5-15% growth range. Reality was it grew almost 50%. The wise doctors determined that initial treatment wasn’t working and they needed to come up with a new plan. Unfortunately they don’t have many options to choose from. They started me on a new drug called Avastin. This is a drug that is still in trial. There are less than 100 professional write-ups, so success rates are still in the trial and error, day-by-day wait and see stage. I receive the drug once every two-weeks. The drug is delivered intravenously through a drip. I go to the hospital and it takes about 2-5 hours, most of it waiting (about and hour for the actual drip). They wanted to get me on the new treatment as quick as possible so my first treatment was just a bag of Avastin (no companion chemo drug). For my second treatment they added a chemo drug, also administered via drip. The combination didn’t work well together (see Cry, Cry, Cry). So after we got through that episode they decided to continue treatment just with the Avastin. Cancer cells spread by generating new blood vessels within the brain. They use them a roads to find new territory. Avastin “inhibits” the rate of new blood vessel development.

OK, back to Johnny.

On Monday we went to Virginia Mason to get a new MRI to measure the effects of the Avastin treatments. We got lucky and the MRI was done on schedule (early morning) without delay. Next we waited till early afternoon for the image to be processed, delivered to my doctor (neurologist) for review and assessment and then our meeting with her. Given everything that had happened up to that point we were not expecting good news. In fact we were prepared for some pretty unpleasant new.

We finally were moved to the doctors’ exam room. They did the normal blood pressure, weight, and temperature stuff. Then we waited for the doctor. That may have been the longest 20 minutes I can remember spend waiting since waiting for seventh grade 6th period math class to end each day. Marlys and I had pretty long faces. There was a lot of handholding and not much talking.

Then the doctor walked in. She looked like she had just been laid by Brad Pitt. Her walk, smile and attitude lit up the room. I almost started crying just looking at her. No way was she bringing us anything but good news. With no formalities and no preamble she opened right up with “You are going to like what I am going to show you”. When you deliver bad news you take time setting up for it. No set up this time. She came right out and said, “Not only did your tumor not grow, but it actually shrunk!”

While Marlys and I were trying to process what she had said she set up the computer and started pulling up images from the current and previous MRI’s. She showed us how the main tumor had receded by about 20% and the “growing field” had also receded by about 15-20%. She spent a lot of time showing us different cuts and pictures verifying the fact that this was really great news. Marlys got her head straight quickly and started with why, how what next stuff. I was so numb that I’m not sure I processed anything except “month” just turned into “years”.

There weren’t many answers to our questions. Not enough research to know why we got the results we did. Early on she had told me not to let myself become a “statistic”. She said everyone has their own DNA which makes them unique. Unique means I will be different from all other people with the same cancer. I should embrace my uniqueness and measure myself by myself. During that visit I finally understand what she was talking about.

Needless to say we left the hospital in tears. We made it to the car before we started making calls. What a joyous afternoon and evening it was, notifying family and friends that miracles really happen. I think we hugged and cried all night long. It was a god night.

On Tuesday we were scheduled for my next Avastin treatment. The process goes: check-in at treatment center, wait for a treatment room, wait for the doctor (Oncologist) to come and check/verify my physical condition since my last visit. Ask and answer questions, both ways. If he’s happy then he orders the medication and the nurses’ take over.

Virginia Mason uses a team medicine approach (I am very impressed with how well they are at it) so he was already aware of the MRI results. You could se it all over his face as soon as he walked in the door. He congratulated us on the success of the Avastin and told us that he was not going to try and introduce a companion chemo drug (he said there really wasn’t anything available) but we would just continue with the every two-week Avastin treatments. Given Mondays results that sounded like a good plan. Everything was smiles and congratulations, and then I had to open my big mouth and ask a question, “any idea why/how this happened”? A quick explanation about Avastin blocking blood paths, all stuff we all already knew. I couldn’t let it go. I had to ask, “can I expect continued shrinkage?” Sometimes ignorance is bliss.

This is where he told us about how little they actually know about Avastin results. But one thing he felt they did have a track on is that the initial treatments provided the most significant results. He said that the impact of the Avastin would start to diminish significantly within 4-6 months. Talk about going from 100mph to 0 in one sentence. It was like my mind froze. In fact I actually asked him again. Same answer but this time he added the part about “unique” and “DNA”. I was only able to partially listen. But I “heard” what he was saying. We left with our minds spinning.

I had really been anxious to write a new blog post telling everyone about my miracle, but today’s information cast a shadow over Monday’s news. I couldn’t think of what to write. I especially couldn’t think of how to tell the family and friends I’d called on Monday that things had changed, again!

On Wednesday morning I woke up (OK, only partially true – I’m not sure I ever really went to sleep) with a head full of thoughts. The “unique” and “DNA” thing was finally resonating in my defective brain. I mean “what the heck”, on Monday I’m told that my doctor has just seen something she has never seen before, a tumor that actually got smaller, and by a significant measurement. She didn’t actually say the “miracle” word but I could see it all over her face. So what if on Tuesday the Oncologist said that “the very limited information they do have says the effect ‘usually’ diminishes over time”. Add in the “unique” and “DNA” and it takes on a whole different meaning. Didn’t I just prove that I AM UNIQUE! Why should I start thinking that I will just be one of the statistics when I just proved that I am unique!

It will be a long 8-12 weeks till my next MRI. But I will guarantee you that the doctors on my team will be far more anxious to get the results that I will be. I already know what the scan will reveal. I can hardly wait to see the look on her face when she walks into the exam room next time.

On Thursday it was back to focusing on life and the future. Life is good! I love you all. Thanks for all the continued good wishes I receive every day. They are really meaningful to me.
Now if I can just get Johnny out of my head.