Wednesday, November 26, 2014

Final Arrangements

If you are in the Baton Rouge area and would like to pay your respects Ann's funeral will be at the Rabenhorst Funeral Home on Florida Blvd on Saturday the 29th.

The link below will take you to a google maps link for directions

Directions


Visitation will take place from 9-11am

The service will take place at 11am



In lieu of flowers please make a donation to the M D Anderson Cancer Center

Dontate


Gentle Closing

I think this will be the last entry into the blog.  And I realized that I need to be gentle in its closing.

Not everyone who read this was interested in just me and Ann as people.  Some have come to this blog just like we did to others.  In a search to find someone who beat the odds.  Fought the cancer and won.  Someone who walked between the all the rain drops.

They like Ann and I (we are still a team) maybe facing a bone marrow transplant to try and cure a blood cancer and are looking now at these last posts with a mixture of despair and horror.  Please realize that your experience doesn't have to mirror ours, in the sense that despite our best efforts we stepped on almost every landmine that Ann's biology could think of.

ALL t(4;11) - one of the worst varieties of acute leukemia.  Got it check.

Post transplant Lymphopliferative  Disease (PTLD) - A rare complication.  Got it Check.

Late GvHD of the lungs - Another rare late term complication.  Got that one too...Check.

Squamous Cell Carcinoma of the Tongue - Another complication.  Check.

Squamous metastasis going undetected because of fluid retention from steroids - Check.

Squamous metastasis to the spine - very rare.  Accounted for.

So as I am now speaking to the hypothetical transplant patient, You, odds are you will not have all of these complications.  You might have some, or a few, but in the struggle Ann and I fought through we found the deck stacked against us time and again.  Chances are if there was a 'poor' patient population to fall into we were either in it or on the boarder of it.

What I am trying to say to you Mr. or Ms. hypothetical transplant patient is that, Ann and I had very few breaks, but we obeyed protocols, said infection free, and educated ourselves about medicine, oncology, hematology, transplants, and the human body.  Enough so that we could take a proactive stance in our care, not just accept things on face value.  We empowered ourselves.

And like so many people are telling me today, we didn't fail, we brought 8 precious years worth of friends, pets, lazy Sundays, late night movies, grocery trips, birthdays, gardening, reading, snarky jokes, love making, studying, learning, listening to music,making friends, special dinners, meeting her donor and so many other things, but most of all dreaming.  in short it brought us 8 years of joy.

When Ann was diagnosed all those many years ago at 32, she would say to me, "I just want to live to my 40th birthday".  Well, we did and could we have done anything better?  Sure.  But we didn't live life like it was going to end on a schedule.  We lived it like everyone else does - one day at a time focused on what you need to to stay 'normal' when you have been touched by cancer.

My message is simple Mr. or Ms. hypothetical transplant patient.  Don't give up on yourself because Ann has died.  Go back and look at all the things she accomplished because she never quit even when the odds ran against her.  She made the most of her life despite the obstacles biology placed in her path.

Never give up and yourself and don't give into despair.  Ann never did and always tried to make her life one worth living.

Try - you might do better than her.




I did say this will be the last entry into the blog, but there may be one more.  We will have to see...it depends on how much strength I can muster.


Beyond the infinite

 At 9:30AM this morning my best friend, wife, lover and radiant bride took her last breath.  The light is gone from the world.

Sunday, November 23, 2014

Don Quixote

"Sancho my armor!  My sword!"

 I know how Senior Quixote felt now.  To be galvanized to heroic action, by a great up swelling of determination and virtue from the core of your being only to find it is fundamentally in vain.

Now I am not going as far as to say I look the fool like the old Spanish nobleman, but I am certainly humbled.  Let me explain...

As set forth in the pervious update, Ann and I had formulated a 3 phase plan to cope with what is happening, scratch that word 'happening', too vague and polite.  What I mean is her death  There - I said it.

Unfortunately we are stuck in Phase 1.  When Ann got back from MD Anderson she had a fall and hit her head while using the toilet.  That lead to EMS showing up at the house and them discovering her blood pressure had dropped quite low.  This brings us to the Emergency room and from there back into the local hospital.  Time elapsed from discharge at MDA to readmission into hospital, a scant 16 hours.

So now once again residents of our local hospital we tried to make the most of it.  Ann got moved into rehab and spent a good bit of time trying to get her stubborn legs to function correctly again - with some good and bad results.  Steroid induced myopathy is stubborn and needs a long term approach to treatment for good results.  But she pushed on and kept trying.

This is of course past tense.  On Thursday of last week she started having difficulty with tasks that just the day before she could do.  Also in the span of a couple of hours her O2 saturation began to drop from 99 to 86.  Then a chronic cough, and difficulty breathing.  Suspected diagnosis is of course pneumonia.  So rehab comes to and end and she is moved to acute care.

IV antibiotics and antifungals are started.  Cultures are taken of blood and sputum.  Blood counts are checked and it is noted how low Whites, Reds and Platelets are, so transfusions are started.  A couple of days later those numbers aren't getting better despite the infusions.  So there is now serious concern that the infection in her lungs may have gotten a foot hold in her bones and be suppressing or ablating her marrow.  Net result is that Ann is having trouble breathing without oxygen running - which right now is at 1.5 liters, but has been as high as 4 liters.

This all sounds bad and is.  But the really worrying part occurred this morning when Ann coughed up some phlegm and blood.  This is an ominous sign and points to a barely controlled systemic infection, of which they still do not have a cultured organism for.  With out which there is no targeted method for fighting it.

But Ann, maybe out of a wisdom greater than my own, spoke the truth to me last night.   Through labored breathing and with a long pause she said "Chris, I know I'm dying."

Those five words laid bear the truth to me. Like the old myopic knight I have been looking at the plan we made, urgently focusing on how to get to phase 2 (aka. the fun part -parties etc).   Celebrating every step or achievement she made in rehab, just hoping that she would make enough progress so that we could resume some sort fiction of a 'normal' life until recurrent scans said we couldn't afford it anymore.   I never seriously considered that Ann might experience too many complications to make it to that far.

It seems that these are the shores of the land we find ourselves unexpectedly upon. So we are revising our plans now before we lose the chance to do so forever.  Tomorrow, I have an appointment at a well regarded inpatient hospice.  If it is acceptable then we will be moving Ann's treatment there.

I am too tired and emotionally drained to proof read this.


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.