Thursday, October 23, 2014

Phase 1

So Phase 1 of our three part plan is underway. Ann is currently on her 4th round of radiation which will eventually deliver about  50 GY to the tumor that ate her T4 vertebrea.  

The thinking right now is that the metastases that "colonized" the vertebrea may have been outside of the radiation field when her neck was treated, or on their way there once treatment had begun.  Thus they may have avoided any significant exposure to and therefore absorption of gamma. 

Side note:  there is an Enginneer's joke/quiz that goes like this which will help some in the audience understand radiation and what Ann' going through better - 

You have four cookies each cookie emits a different radioactive particle.  You must throw one cookie away, eat one, put one in your pocket and hold one in you hand.  

The cookies emit gamma, alpha, beta, and neutron particles. Which do you do with which?

The answer is: eat the gamma cookie, gamma is energetic photons that can easily pass through tissue without reacting with your cells. In fact you need a couple of inches of lead or even more water to drop gamma exposure to back ground levels.  You can hold the alpha cookie because the particles emmitted by it can be stopped by a sheet of paper.  However, don't eat the alpha cookie because even though it is such a short range emitter, on the small scale of cells it can become very toxic.  You can put the beta cookie in you pocket and finally you should throw away the neutron cookie!  It's heavy energetic subatomic particle  paracticly guarantees that energy/particles emitted by it will be absorbed by tissue without just passing through. Look up the Louis Slotin accident if you need more illustration. 

Side note over:  so Ann is getting gamma from a Varian True Beam in a box field around her spine, and while I hope it is effective, there is the real possibility that either some of the cancer will not absorbe a randomly targeted photon (gamma ray) from the machine. Or that there may be more metastasis free in other regions that have not made themselves know yet. This effort may be effectively shutting the barn door after the horses are out, and have then gone over to murder the chickens and set fire to the pigs then write angry racist graffiti on the farmer's house.  But I hope not.

That's the treatment update. So you may be asking what we are spending our time doing apart from that?  Easy answer PT, or Physical Therapy.   This comes on two flavors -organized and casual. 

For organized PT which is scheduled three or four times a day - done under the supervision of me or a therapist She can sit up in bed (with effort), stand up out of bed (holding onto a walker), walk about 700 feet (with a walker), and today she managed a 5 degree incline and 4" step ( both challenging).  Considering Ann was a paraplegic 2.5 weeks ago, and now has a partially titanium spine she has made remarkable progress. 

Causal PT is basically anything else from dressing to going to the bathroom and it happens all the time. It would be easier if we just did everything for her, but most of what I or the PT's do during this is watch on a hair trigger as she performes some mundane activity ready to swoop in grab her and prevent her from falling.  Most of this centers around the shower, the bathroom or dressing -basically the holy grail of trips and falls. 

This is complicated by the considerable amount of muscle atrophy that has appeared in a shocking short time. Without constant stimulation by nerves calves, thighs and glutes have all taken a hit. This is reversible but it's going to be a challenge until Ann's brain figures out the new pathways it needs to use to trigger those muscles. 

Lots of people give up and my darling had a large dose of self doubt this morning. But thanks to the efforts of the fantastic PT team on the P8 floor I think she has bounced back. 

Before I close I want to share with you a testimonial for some very kind and warm hearted people.  When Ann was at the hospital in Baton Rouge there was real doubt that we would be able to get her to MDA in Houston. Due to the spinal compression ground transport was out and that left only helicopter or plane. Owning neither of those I reached out to the people at Angel MedFlight of Scottsdale Arizona, and wow did they ever deliver!  Thanks to Jennifer and the fantastic flight crew they managed to get Ann to MDA in about an hour while I followed along at a snail's pace on the interstate. But the kept me informed and my piece of mind intact every step of the her journey with them, by constantly calling me to let me know when she was onboard, when they took off or when they landed. 

According to the MDA doctors this is only the second hospital to hospital transfer that was not arranged by a institution they have seen in 10 years. It's amusing to see the "type A medical nerds" impressed for a change.  

If you are in the unfortunate position to need them, you can reach them at 877-264-3570.  I've been fighting this battle with my Wife for 7 years and very rarely has a service like their's been right there precisely when we needed them the most.  I cannot endorse this fine group of professionals enough. 


LPC said...

I imagine that regaining some mobility, and the ability to take care of daily living, must be the Holy Grail right now. I wish Ann all the best in this process. Love to you both.

Anonymous said...

Happy that the crew of Angel Med Flight were able to carry Ann to get the attention she needed. Thanks for sharing this! And you followed at a snail's pace all the way-amazing love!
Aimee P

Ronni Gordon said...

Thanks for the update, and glad you still have your sense of humor and are seeing some progress. I'm sure you are keeping in mind the stories of many people who defied the odds after being told they only had a short time to live.

Nancy said...

Wonderful update. Love how Angels MedFlight were really there for you. You are such an engineer Chris. I enjoyed your Radiation 101 Class. PT is keeping you both busy and I'm glad she is progressing. Keep up with the PT Ann. Love and Kisses! xoxoxo

Anonymous said...

You are both an inspiration, an example of perseverance and strength.

Jeannette said...

It is wonderful to hear that Ann has some mobility returned to her. You are such an inspiration, both of you. So glad you made it out to MDA, wonderful of them to get that flight together for you. Thinking of you all. -Jeannette Hill

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