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. 


Sunday, October 12, 2014

End Game

Chris here:

It has been a busy week and lots has happened much of it unexpected. 

It started Sunday morning when Ann told me the bottoms of her feet had gone numb.  A few hours later the numbness had crawled up her legs.  A few more and it was at her hips.   Next she had trouble standing and walking.  

With the help of a neighbor I got Ann loaded into the car and we set of to the local ER.  After a long wait she had a CT followed by an MRI.  The result was that her T4 vertebrae had collapsed and ejected a large bone fragment into her spinal cord. By this time she was paralyzed from the waste down and headed into the OR for a spinal  decompression.  

Surgery went well but there was a worrying mass of inflammatory tissue surrounding what used to be the vertebra. Initially pathology in the OR identified it as "spindle cells" and me and her co-workers breathed a sigh of relief that this tissue wasn't cancer.  

The next day in the hospital was different.  Relief turned to panic as a second pathology read reported squamous cell carcinoma.  I wouldn't believe it so I collected Ann's scans and tissue samples and drove them four hours to MD Anderson in Houston to personally place it in the hands of the Radiation Oncologist who treated her 8 weeks ago. 

We all thought too many parts of the picture didn't make sense. No hypercalcimia, a previous history of osteopinea, a painful back muscle s couple of weeks ago while lifting something heavy and a lack of cancer in the originally treated area all seemed to point to a osteopenic back fracture brought on by prolonged exposure to chemotherapy.  MDA seemed to agree and pointed out that it would takes big shift for Ann's original cancer to begin to metabolize fast enough to destroy bone, besides squamous cell was not known for metastases to bone.  I left MDA that day with a promise from Ann's docs to find out what was going on  

Unfortunately the next day we had our answer. It was cancer - same markers as the small tumor on her tongue, same as the tumors in her neck. 

This is as bad as things get.  So while Ann has regained some control over her legs now that the broken bone has been removed, as far as cancer goes there are no more silver bullets in the gun, no more space left on the margin. MDA says that this is treatable but not cure able. 

In other words Ann is terminal.  

Life expectancy is somewhere between 12 weeks and 18 months.  

As you would expect this is incredibly hard.  Both of us have been suffering anger, grief, sadness and fear for the future over the last couple of days.  

Today we made something of a breakthrough in how we are going to deal with it.  What we have come up with is a three part plan: 

1- we will go back to MDA for about 10 days of targeted radiation and chemotherapy to try to kick the cancer back as far as we can. 

2- we will then return home and I will get home health in to help Ann around the house with stuff she has trouble with and physically therapy to help her keep exercising her legs.  We will spend all ther rest of our time screening movies, having dinners and fun with friends, family and neighbors.  Most importantly we will have lots of love from our Kitties who are the light of Ann's life. 

3- when Ann is ready we will find a hospice that will treat her with all the respect, kindness, dignity and gentleness she deserves.  

Long time readers of the blog will be disappointed that we don't have a happier end to share.  But this isn't a time for tears, or bitterness for what might have been.  It's a time for savoring what we have together and how much we love each other and always will. 

Everyone has to do this once and I am determined that I am going to make this the best it can possibly be for my Best Friend, Lover, Wife and above all Soul Mate.  She will eternally be that beautiful woman I married on a hot June day on Bloody Bay.  

 

  

Wednesday, October 1, 2014

Progress

I saw my local oncologist yesterday for my regular follow-up visit. My blood work numbers were good, save for my creatinine. It's up to 1.5 again. Dr. B. was concerned since I'll be having a CT scan with iodine contrast next week. The iodine is really hard on your kidneys and if your creatinine is too high, the test can't be performed. I'm at the very top of the threshold according to Dr. B. He offered me IV fluids to help flush things out. I declined and promised to increase my water consumption up from 2 liters a day to between 2.5 and 3 liters.

Recently, I've been dealing with a lot of upper back pain. This is really nothing new to me since the car wreck I was in 3 years ago resulted in a herniated disc in my neck. It flared up to a nearly unbearable pain last week. Dr. B. was kind enough to put in orders for physical therapy, which will help me to get the pain under control.

On the ability-to-taste front, things are better. A few weeks ago I read a study that showed taking a zinc sulfate supplement helped to regenerate taste buds faster post radiation treatment. I don't know if it's a coincidence, but my ability to taste has improved significantly. I've lost the ability to taste salt, but I am able to taste sweet again. My ability to taste is nowhere near normal yet. I'm able to taste the essence of food for the first few bites, then things go flat. I'll take what I can get. It's a significant improvement over not being able to taste and having to rely solely on the texture of foods not making me want to vomit.

That's my life up to now. If my scans are clear, I should be cleared to return to work. Cross your fingers and toes.