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.

Thursday, August 28, 2014

Frustrated

I don't know what to say. I didn't think this would be as hard as it has been. I stopped eating solid foods a few weeks ago and have had a very hard time getting back on the horse. The problem is a combination of nausea/vomiting, lack of taste/appetite, psychological.

I don't remember food being this difficult during transplants, but that could be distance painting a rosier picture than what was. To be totally honey, hydrating is a problem too. And these make for a bad pairing.

The last time I was at MDA, my creatinine was 1.6. Normal is between .6-1.o. I've always fallen below the low end of normal, which means healthy kidneys. My transplant doctor asked me to have more blood work done the following week. My creatine was slightly worse. Dr. B. suggested that I was dehydrated and suggested IV fluids. I acquiesced.

The following week I saw Dr. B. again and things were much the same. I confessed my inability to sufficiently eat or drink. He reassured me it was all normal and that things would be better by the second and third week. In the interim, he's prescribed a short course of steroids to help me with what's causing the nausea/vomiting.

I'm slowly trying to get back to solid foods. It's harder than you'd believe. Chris has been very patient with me. I know it's very difficult to see the person you love unable to do the things that you take for granted every day. I'm hoping to give a better report in a few weeks. Hopefully I can start eating normally before too long.

Friday, August 15, 2014

Finished, Maybe?

I had my final radiation treatment on Wednesday. 33 in total. As for what happens now, I don't really know.

My creatinine levels are compromised, so I have to have blood work done locally next week. My transplant doctor has suspended some drugs just in case. The chemo drug I was receiving is known to be unkind to kidneys.

I'm off of solid foods due to my throat and mouth hurting so much. I can't taste anything, either, so it is a strange experience. The next 2 weeks are crucial to my healing. The skin around my neck is a very dark red in addition to peeling and stinging. I'll need to consume enough calories and protein to help it all heal in the meantime.

Most of my time is spent sleeping. The fatigue from radiation is mind numbing. As appointments appear on my schedule, I'll keep you all informed of what happens next.

Sunday, August 3, 2014

Eight Days

I have eight radiation sessions left. Eight. It seems so insignificant to write it out, but those eight sessions feel like they'll never be over. There's also one chemo left. I don't know what happens after that last session with the electron gun. This is so very different from blood cancer.

The sense of urgency isn't there. There's no mad rush to get things done. Treatment happens at a slower pace and it makes me a little crazy. Once I know what will happen, I know I'll feel better about everything. I've already been warned that the effects of radiation will continue for 2-3 weeks after that final session. My skin has broken down on the right side where I'm getting a larger dose of radiation. It is most uncomfortable and very unsightly. I can't imagine it getting much worse, but I've seen pictures.

All of this is so foreign. I wish I could give you all more details, but I'm as much in the dark as you all are. There will be a PET scan at some point after the final treatment to see if radiation and chemo have killed the cancer. Fingers and toes crossed.

Thursday, July 31, 2014

Reminder

Hi All, I just wanted to put out a reminder that my company's fundraiser to help off-set my medical expenses for this latest round of treatment is Friday, August 1.


Saturday, July 19, 2014

Time on My Hands

Three and a half weeks isn't a long time. It's not. 18 more radiation treatments. 3 more chemo treatments. That's nothing in the scheme of things, but it's stretching out in front of me like it will never be over.

I'm sick of feeling slightly ill and shaky. I hate that all of my effort is centered on eating and drinking. I have to keep my calories and protein intake up. I met with the GI center about placing a feeding tube. If I get one, it has to remain for 8 weeks before it can be removed. They've warned of placing feeding tubes in the last week of treatment because the affects of radiation continue for weeks after treatment stops. I don't need one yet since I'm only losing roughly a pound a week. Too much weight in once week and hello PEG tube.

Chris has been a champ throughout all of this. He's working while I'm between appointments.

I don't have very much more to report. My neck is seriously sunburned where I'm getting radiated. It's going to get worse. I'll keep posting as things occur.

Tuesday, July 8, 2014

My turn

It's been a very difficult two weeks for a number of reasons. Patricia, aka PJ, of the Plog has died. She's been by my side blogging since almost the beginning. We used to talk on Sundays and compare transplant notes. She's had the same number as transplants as I, although she was treated for AML. We laughed and cried together and I will miss her very much.

Another friend is currently in the hospital after getting into a car vs. motorcycle accident. I don't have the details and hate that Chris and I are not home to visit him in the hospitals. He's been so sweet to us throughout this latest cancer endeavor and I wish I could return the favor.

Chris and I couldn't get through any of this without our friends. So many reach out, just when you need them to let you know you're not alone. My dear friend Lisa, of http://www.lisabadams.com  checks on me every day and gives me a connection to another woman who gets this whole carnival of a cancer ride. We don't always talk about our cancers which is such a balm. It's so nice to be able to talk about the small things that most people let pass by. There's a healthy dose of snark, which if you know me is a given, and I am forever grateful for her.

Now on to the stuff you're really here for. I'm on my second week of treatment post neck surgery. I've now had 6 radiation treatments and am tolerating them well.  Since I'm being irradiated on both sides, my neck is sunburned and slightly uncomfortable. I know things will get progressively worse. I'm looking forward to a sore throat, mouth sores, esophagitis (sores in the esophagus), nausea and fatigue.

I've completed two of six chemo therapy treatments. The agent I'm receiving was jokingly called "baby-chemo". I'm here to tell you there's no such thing. I thought that since I was only getting one dose a week, it wouldn't be so bad. It's bad. Apparently, cisplatin is highly emetic. Last week, I spent two days constantly vomiting. I expect the same to happen this week. Always Wednesday and Thursday, after the pre meds wear off. Chris has ensured that my weight has remained stable.

If I lose ten percent of my body weight in the first few weeks, then I will be encouraged to get a feeding tube. If mouth and throat sores become too bad, the feeding tube is still on the table. I can't heal if I don't get enough hydration and protein. If it means getting a tube, then I will. Until then, I'll do all I can to hold it off.

The doctors have warned me that the sore throat will creep up on my by the end of this week. I've already got a touch of fatigue. My hair should start falling out by the end of week three. It's already a little thinner up top. These are all temporary things and I will get through them.

I just keep telling myself 5.5 weeks. It's such a small fraction of time when you consider all of the time I lost to 2 transplants and leukemia. This is nothing in the scheme of things in terms of time.

Tuesday, July 1, 2014

Friday, June 27, 2014

VMAT

Hello all.  Chris here, to fill everyone in on the details we know and what the plan moving forward is.

First, the final pathology has come back on the Tumor in Ann's neck and its a mixed bag.  One the positive side the tissue described to me as a "hamburger patty of tumor" that wrapped around Ann's neck from chin to almost the occipital bulge (aka back of the head) was in fact partially necrotic adipose (aka fat) tissue.  Why partially necrotic?  Beats me, and almost everyone else we have talked to about it.  But it explains why it didn't show up on a PET scan, which only show things with a high metabolic activity.  Necrotic or dying tissue has almost no metabolic activity.  So that mystery is solved.

The bad news is that within this mass was in fact Squamous cell metastasis.  Fun fact Metastasis is taken from greek (more about that in another post) Meta - meaning New and Stasis - meaning Place. Anyway, this mass of adipose tissue was masking the presence and growth of the cancer in Ann lymph nodes.  The cancer was present in ten lymph nodes from level IIB around the C2 vertebrae all the way down to level V around the adams apple.  Which is why the planned surgery took 5+ hours, and not the planned 2.

 All together the official diagnosis is a Metachronos (new-time) TxN2bM0 or Stage Iva recurrence.  Tx - unknown primary tumor.  N2b - more than 1 lymph node involved on the same side of the neck.  M0 - no present distant metastasis present. This all sounds depressingly bad, but we have been assured that it does get worse.   So while it may feel like we didn't catch this as quickly as it could have been, our new Radiation and Chemo Doctors are pretty confident about the prognosis for successful treatment being about 80%.

Both have pointed out that Ann didn't have the truly critical factors of disease being present on the opposite side of the neck, or it being involved on the glottis or base of the tongue.   Plus they have put together a very comprehensive plan to tackle this.

What they plan to do is use a Truebeam VMAT machine to irradiate both sides of Ann's neck (right is necessary, the left because we want to be super aggressive with treatment).  VMAT stands for Volumetric Modulated Arc Therapy, and it is a variation of IMRT, or Intensity  Modulated Radio Therapy.  VMAT machines allow Doctor's to treat a variable volume of tissue, while sparing critical tissue.  In my sweet heart's case, the tissue targeted will be everything from the jawline down to the collar bone, with the spared  tissue being the spinal cord only.

The machine will deliver 66 Gy.  A Gy is a SI unit for radiation known as a Gray, which represents the the energy delivered to a mass of tissue.  So its fundamental units are 1 Joule/Kilogram or 1 m^2/s^2.  The technically savvy among the audience will notice that a Gray (Gy) and a Sievert (Sv) have the same SI measurements, which makes them interchangeable units.  The only difference is that a Gy is spoken of in terms of emission and a Sv is spoken of in terms of absorption.  An important distinction  in some occupations - NASA for example will not allow an Astronaut  to accumulate more than 1 Sv in a lifetime.  And each time you eat a Banana you absorb 0.098X10-6 Sv.  Funny to think that you have a finite number of Bananas you can expose yourself too at one sitting before endangering yourself to cancer or radiation sickness.

In Radio Therapy treatments however the aim is for the source emission and dose absorbed to be as close to equal as possible.  So Ann will be accumulating 66 times the maximum lifetime dose of an Astronaut.  Which is about 132 trips to Mars and back.  MD Anderson has pointed out that the standard of care is only about 53 Gy, but they are pushing hard to make sure we don't ever have to deal with this particular gremlin ever again.

On top of this they are adding a chemo agent called Cisplatin.  Which has been described to us as "a little bit of chemo", in comparison to what we have been through already for treatment of Leukemia and 2 BMTs.  The purpose of the chemo agent is to head off any metastatic disease that may be out side of the field of radiation.

I feel like I am beginning to ramble, so I will leave you guys with a animation the VMAT RT machine , so you can get a better idea of what I've been going on about.  Apologies for the music in advance.





Edit:  Sorry for the typos - I have a terrible habit of trying to dash off a post quickly and then not pausing proof reading it.  It's a habit I thought I had broken myself of, but apparently not.


Thursday, June 19, 2014

Getting Closer

I finally got the call this week. Radiation preparation begins tomorrow and will run through the following Thursday. If all goes well, radiation and chemotherapy will begin on 6/30. I'm ready to get this over with and behind me.

The last few weeks since surgery have been a challenge. I'm learning my limits since the muscle in my neck was removed. I'm hopeful that physical therapy will help with some of the function that I've lost.

In the meantime, my wonderful friends at work have put together a fundraiser to help with my medical costs as I tackle cancer for the fifth time. Here's the flier explaining the event and raffle.


Tuesday, June 10, 2014

Another Follow-up

We made another trip to Houston on Monday and I saw my Head and Neck surgeon. Dr. G. took a look at the incision on my neck and told me it looked like I was healing well. I still have swelling in my neck and under my chin.

I've been sleeping in an elevated position since the surgery. It makes for a very poor night's sleep. Chris asked Dr. G. if I could sleep without the extra pillows and she agreed. I tried it last night and woke up with extra swelling under my chin. Since the lymph nodes have been removed from the right side of my neck, there's no drainage, hence the swelling. I'll be seeing a specialist in the lymphedema clinic in the next few weeks. The swelling will be a life-long condition, so I need to know how to deal with it so that it doesn't get worse.

Once I've had more time to heal, I'll get scheduled for a radiation simulation. I expect it will take place in 2 weeks or so. As I learn more, I'll post.

Friday, June 6, 2014

Another specialist to round out my set

Yesterday, I added another specialist to my alphabet of doctors. Dr. M. will be overseeing chemotherapy for me. After reviewing my medical history, she's determined that I'm an unique case. I should probably have a shirt made stating the obvious.

At this point, the plan is for me to get a round of chemotherapy for each week of radiation. It seems that I will be having 6 weeks of radiation, so 6 rounds of chemotherapy will compliment that. I'll be allowed to come home on the weekends initially. The doctor guessed maybe the first 3 weeks. After this point, the cumulative effects of chemo and radiation will have caught up to me. I'll probably feel too unwell to travel and in case of emergency, they want me nearby.

I'll see my surgeon on Monday, and hopefully there will be pathology results to share.


Tuesday, June 3, 2014

Where do we go now?

It's been almost a week since the surgery to remove a few lymph nodes on one side of my neck. You all know that turned into something wholly unexpected for the surgeon and us. Dr. G. and her team removed my tonsils and found a large, flat tumor encompassing the nodes on the right side of my neck. A routine 2.5 hour surgery stretched beyond 5 hours as Dr. G. attempted to remove as much of the tumor as she could.

There is muscle infiltration, so she could only remove so much. My neck is asymmetrical. Muscle and lymph nodes as well as a tumor were removed from the right side. She had to take part of my jugular vein. In her words, it's because the tumor was slap up against it. Nerves were severed. The right side of my face droops. I have to practice smiling and pursing my lips because one side drags down. Unless I'm looking in a mirror, I can't see that only half of my face is complying.

There are stitches stretching from slightly past the left middle part of my chin to just behind my right ear. It's a very strange sight that greets me each time I look in the mirror.

I'm tired and my throat hurts. The pain pills help keep the pain in check so that I can eat. They also put me to sleep which helps with my healing. I have to sleep sitting up, which means I get very little consistent rest. Each time I drift off, my head nods forward and I startle awake afraid of pulling stitches. The cats take turns using me as their personal breathing armchair.

Chris has been amazing throughout all of this. My friends have been an enormous wealth of love and support. Social media keeps me connected. I'm not always up to replying to emails and texts in a very timely fashion. I tend to fall asleep in the middle of reading them. I know it will get better and that my body needs to rest in order to heal. I'll try to keep everyone updated as I learn more about treatment. I'll meet with the oncologist in charge of chemotherapy on Thursday.  All treatment and testing will occur in Houston.

I'll wrap this up by saying thank you. Thank you to all of my friends and family and all of the kind strangers who read this blog for reaching out to us and letting us know we're loved. We draw strength from each of you and want you to know how very much your words mean to us.

Friday, May 30, 2014

Day 3

Chris here - I need to apologize to everyone.

My head has not been in a good space and I'm sorry. I will try to be better.

We are getting ready to go to clinic and get Ann's drain removed. From there, absent complications we are headed back to home and cats.

- Posted using BlogPress from my iPhone

Wednesday, May 28, 2014

Day 1

I am resetting the clock back from what ever it was post the last BMT, back to zero.

Here is what I know:
1)  The cancer in Ann's neck did not come from her tonsil.
2)  The cancer in Ann's neck blew holes in several of her lymph nodes.
3)  The cancer in Ann's neck had grown to a large matted clump that encased several of her nodes on the right side of her neck.
4)  The cancer in Ann's neck covered and area from the midline of her chin to behind her right ear.
5)  The surgery team nearly aborted the procedure when they were confronted with this.
6)  The cancer in Ann's neck did not show up on her PET scan.
7)  The cancer in Ann's neck is the same group of tumor cells that was cut off of her tongue over a year ago.
8)  The procedure was supposed to be 2.5 hours long, but the surgical team needed twice that long to debride the tumor.
9)  Ann lost some muscle in her neck and part of her jugular vein.
10)  ...
11)  This situation is a whole lot more serious and we ever imagined.

Prognosis is about 20% or less.  Treatment plan is radiation and chemo with scans very 2 months.


I promised I would never leave her and I won't. Not ever.  But I don't know what to do.


Sunday, May 25, 2014

Hot Tonsil

Chris here - 

I haven't blogged in a long time - and frankly I've enjoyed it.  The activity on this blog is in direct inverse proportion to Ann's health.  So less blogging means no cancer.  Well until last week that is.

Dr. G, Ann's Otolaryngologist at MDA (who also performed the surgery on her tongue) called her the other day and gave her the run down on the PET scan results.  Basically there are 3 hot spot nodes that look enlarged (1.2cm, 1.5cm and 1.1cm) in the right side of her throat.  They all vary between levels 2 to 5, but I will spare you the amateur anatomy lesson on the exact placement of the nodes, just that they are all near the jaw line or jugular.

The surprise came when she noted that Ann's right tonsil is also "hot" on the PET scan.  So it looks like we may (may) not be dealing with a recurrence of the tongue lesion from more than a year and a half ago.  This could be something "new" that originated in the tonsil.

Considering the timeline of this thing is about 6 weeks and it's exploded into the lymphatic system this makes sense.  6 weeks ago Ann was at MDA and believe me when Dr. K does an exam she palpates Ann's nodes throughly, not forgetting that Ann's original leukemia presented as a reactive node.  During that visit there were no enlarged nodes, jump forward a few weeks and Ann notices one at breakfast and calls Dr. B at Mary Bird Perkins.  And then last week we have a reading of squamous cells detected in the needle biopsy done two weeks ago.

My working theory is that this is a realtively young disease that originated in her right tonsil.  The tonsil is the gateway to the lymphatic system so it has been able to roam freely from the origin source to several of the nodes.

What we don't know at this point is if the cancer is HPV positive.  Since Ann is immune suppressed I would guess that there is a decent chance that it is.  What little information I have been able to absorb from journals is that HPV positive tumors of this type tend to be smaller tumors with more lymphatic activity.  Which sounds bad, but actually has a more favorable outcome attached to it.

Tuesday we are in appointments with Dr. G and the rest of the MDA team and I expect we will know more.

In the meantime the Light of my Life is doing her best to age me prematurely by another 20 years.  This morning started with phlegm in her throat which brought on vomiting.  Later in the day we stopped by a friend's birthday party for her kids and dropped off presents.  After about 40 minutes there in baking conditions (very hot today) Ann fainted and just about split her skull on a door frame. Friends jumped in and made sure Ann was taken care of. We're very fortunate to have such amazing people in our lives.


If you have read our blog for the last couple of years I want to say first " thank you".  We have drawn immeasurable support from the comments and contacts we have made through our efforts.  Second, I feel I owe everyone an apology that we have to ask you to go through one more round with us.


Thursday, May 15, 2014

It's Cancer

My doctor called me with the biopsy results yesterday. It came back positive for squamous cell carcinoma.

As a side note, I saw my transplant team at MD Anderson on Monday and had a CT scan out of an abundance of caution and in order to give my transplant doctor the opportunity to examine the nodes in question.

My local oncologist has been amazing throughout this process and I can't say enough about him. He's been in contact with my doctors at MDA--who are also fabulous in their own right. My head and neck surgeon's team has organized my pre-op appointments. I need to have a PET scan to see if the cancer is any where other than my neck. Then I need to have my heart checked out to see if I'm healthy enough for surgery and treatment. There will be X-rays and I'll need to be cleared by internal medicine. For good measure, I get to see my dermatologist for my annual check-up the same day. (It's been on the books for a year.)

This all kicks off on 5/22. If I'm cleared, I'll meet with my surgeon on 5/27 and surgery will take place the following day.

Chris or I will update as we get news.

Sunday, May 11, 2014

An Abundance of Caution

When I contacted my local oncologist 2 weeks ago, it was out of an abundance of caution.

When he prescribed antibiotics it was out of an abundance of caution.

When I returned to see my doctor after a week, it was out of compliance. He wanted to see how I'd faired on antibiotics. My throat was no longer red, but I still had small lymph nodes in my neck that were palpable.

For the record: I never had a sore throat. No fever or  cough. Had my doctor not told me that the right side of my throat was red, I never would have known anything was amiss there.

Dr. B. sent me straight in for a CT scan with IV contrast.

The results came in the following day. Inconclusive. Multiple, small nodes were present on the right side of my neck. My doctor scheduled a biopsy for Friday.

The radiologist performing the biopsy had a few problems getting samples from my nodes. The needle kept getting lost on the ultrasound screen, so he had to try a variety of larger gauges. The node he was after was 2 cm down in my neck, next to my carotid artery. The needles kept bouncing off of the node and sliding sideways.

This procedure is performed with a little lidocaine injected near the biopsy site. It's not the most comfortable experience.

After several attempts, the doctor managed to get some samples. I should know the results by midweek.

In the midst of all of this, I contacted my transplant team at MD Anderson. They've scheduled me for a CT scan on Monday. I'll see my transplant doctor a few hours later. It's a matter of caution. No one is saying it's cancer. Until I've been seen by all the doctors who want to see me, I won't know what we're dealing with.

At this point, it may be a mystery infection that I can't shake, or it could be squamous cell carcinoma. We don't know.

Saturday, May 3, 2014

What's new

Last week, my neck started to feel sore on one side. Of course it was the side that presented with swollen lymph nodes before each diagnosis of blood cancer. I didn't feel sick. I wasn't running fever. Besides my normal daily issue with allergies, and adrenal insufficiency not withstanding, I felt ok. When I pressed on my neck, I could feel a swollen lymph node.

I called my local oncologist that morning. He saw me the same day. Dr. B. confirmed that I had swollen lymph nodes on the right side of my neck. The difference between this visit and my very first encounter with Dr. B. was that this set of swollen lymph nodes were tender and my blood work was in line with my blood work from 2 weeks earlier.

After a thorough examination, he told me that my throat was red on the same side as the tender lymph nodes. He prescribed a 10 day course of antibiotics. I'm on day 5 and the lymph nodes are smaller. I have a follow-up appointment next week.

Friday, April 18, 2014

Holding My Breath

It's been 4 days since I stopped taking steroids. It's been 2 days since I saw my transplant doctor. So far, so good. And now I wait to see if the lung GvHD has been tamed.

It takes 14 days for steroids to leave a person's system. The last time I stopped steroids I managed 12 days of easy breathing.

People tend to think that once the steroids stop, you immediately go back to feeling like yourself. There's one person in my life who insists on telling me that I should feel better because I'm off steroids. I've explained to them how steroids work and what the side effects of being on and off of them are. They keep insisting that I should feel better.

Here's the reality: I have trouble concentrating. I have problems forming complete thoughts some days. I'm tired in a way that only weaning off of steroids can leave you. I've put on 20 pounds since starting steroids last July. My hair has fallen out, grown back in, and fallen out again. I've developed cushingoid features. The muscles in my lower body have deteriorated significantly. I have general muscle weakness. My adrenal glands aren't functioning properly. I shake uncontrollably some days. The list goes on.

Most of these symptoms are temporary.

A check of my cortisol levels revealed that I'm producing next to none. This could mean adrenal insufficiency. My transplant doctor checked in with my endocrinologist regarding my very low levels. The current thought is that I'm too close to having stopped steroids to make a definite decision. I'll go back in a month and have my cortisol level rechecked. In the meantime, I'm supposed to report any side effects related to adrenal insufficiency to my doctor.

I'll be vigilant and I'll continue to go about my life as I usually do. One day at a time.


Sunday, March 23, 2014

A Step to the Left

It's been a bit more than a month since my last entry. I will admit to wanting to post a few musings since the last time I dusted off the keyboard. I mostly haven't because the writing would have been an exercise in ranting against some of the things people post about themselves, in reaction to something I've posted, or unsolicited advice on how to go about my life post-transplant.

I don't think a rant in exchange for a rant is a very good value for the friends who continue to support this blog by reading and reaching out to me.

I saw the 2 specialists most important to my treatment last Monday. Pulmonary had chest X-rays and a PFT waiting for me. The X-rays confirmed that I've developed new scar tissue in my lungs as a result of pneumonia and lung GvHD. The PFT confirmed that I've had a small improvement in my lung capacity. Small. I'm still doing breathing treatments twice a day and I'm still bringing up stuff from my lungs. Remnants from pneumonia.

My pulmonary PA emphasized that I need 30 minutes of cardio every day. I explained that I'm working crazy hours and free time doesn't actually happen until about 8 pm. She told me they didn't care how I managed it and that I could do it in 10 minute increments throughout the day. Talk about being ready for me. The working theory is that I've developed steroid weakness to the point that my diaphragm and lungs have become lazy. The cardio is to help with my stamina. The team wants me off steroids.

My transplant doctor saw me as well.  Both doctors were hoping for more progress. After nearly a year of this, I'll take whatever improvement I can get. Dr. K. elected to step down my steroid dosage to 10 mg every other day. After 2 weeks, I'll go down to 5 mg every other day. Then I stop.

If I run into trouble between now and then, the pulmonary team has asked that I contact them first. They see this more frequently and have considered alternative ways of treating me. Long story short: every one wants me off of steroids. The long term affects can be debilitating.

I've been warned to watch out for extreme fatigue or extreme tiredness. There is a very real concern that my adrenal glands have shut down. If so, I'll need to reach out for treatment.

As things happen, I'll try to post.


Friday, February 14, 2014

This and That

Life has been a cycle of constant motion for the last few months. Multiple visits to MD Anderson balanced with work deadlines have left me feeling several shades of tired. To compound everything, Chris was sick with a cold last week. This week, I'm sick with his cold. I'll cover how it's being dealt with a little further down.

First things first, I saw my endocrinologist last week. He noted that I am displaying cushingoid features more prominently than when he last saw me. My face is taking on that distinctive moon pie shape long-term steroid users tend to get. I have a hump of fat across my neck and shoulders. You read that correctly. A hump. My doctor verified its existence. It does happen when you've been on high-dose steroids long enough and particularly when you're steroid-sensitive. My legs are the skinniest they've ever been. Unfortunately, steroids help the body to redistribute weight. For me, I get all of it solidly around my middle. All the way around. It's like having a fatty tire permanently fixed around your midsection.

All things considered, Dr. J. gave me an A+. My thyroid levels are being controlled by daily medication. I'm still managing to take the stairs at work, thereby fighting against steroid weakness and muscle atrophy in my lower body. I'll see Dr. J. again in a few weeks just to be sure things continue going well. I'll also have another bone density scan to see what damage being on steroids for so long has done to my bones.

This week, I saw my transplant doctor. While there, I had Chris on speaker phone so he could participate in the visit. He confessed to being sick in order to alert the team to the possibility that I'd been exposed. To his credit, when he realized that he was coming down with something, he called his doctor, who in turn prescribed something to help Chris along.

My breathing remains difficult. I feel like I'm improving, but I'm nowhere near the point in recovery that I was experiencing before weaning off of steroids all together in December. During the visit, it was noted that my lungs continue to sound clear. Since things aren't getting worse and I feel like I'm moving forward, the decision was made to step the steroids down again. I'm now taking 20 mg of prednisone every other day. In two weeks, I'll step down to 15 mg every other day. The team is giving me a little break and allowing me to return in a month rather than maintain the 2 week schedule I've been on. I couldn't be happier. The drive was becoming a grind.

As for the cold, I realized that the little monster had taken hold yesterday. My head was congested and my nose was constantly running. My transplant team advised me to get in touch just in case Chris had passed along his cooties, and I definitely reached out. I'm on a 7 day course of Avantin in addition to all of the other antibiotics I already take as prophylaxis while on steroids and tacrolimus. There's nothing more that I would love to do than curl up on the couch and sleep for three days. Unfortunately, the steroids keep me in a perpetual state of wakefulness, so no naps here. I'll settle for a long weekend of cheesy movies wrapped up on the couch while the cats take turns demanding treats and attention.


Wednesday, January 29, 2014

Another 2 weeks

I saw my transplant doctor at MDA on Monday and all went as expected. My lungs sounded clear. I'm still on steroids and dealing with the side effects. Dr. K. wants to slow the steroid taper down to give the drug a better chance of shutting down the GvHD in my lungs. So now I'm taking 30 mg of prednisone every other day and will return to Houston in 2 weeks for another checkup.

Next week is my standing appointment with Dr. J., my endocrinologist. I don't think there will be any surprises.

Sunday, January 19, 2014

Learning to live with an unwanted guest

GvHD is something that I've resigned myself to living with. It affects one system or another, or multiple systems when it's feeling really frisky, on any given day. It's the thing that keeps leukemia at bay. It's also a thing that can kill me if left unchecked.

Since July of 2013, I've been on steroids for GvHD of the lungs. I started at 60 mg of prednisone per day and slowly tapered to nothing as of December 13, 2013. Things seemed good. I was taking the stairs at work, per my doctor's orders and working on building up lung volume. The most recent pulmonary function test prior to stopping steroids showed my lung volume up from 55% to 67%. That's not too shabby. Of course, that didn't mean I wasn't running out of breath at the top of the stairs or contemplating taking up running any time soon. It meant I wasn't struggling to breathe on a regular basis. Humid days still gave me trouble, but not the gasping, fish out of water feeling that sometimes overtook me on a really bad day.

I began feeling short of breath again on December 26, 2013. Nothing terrifying, just a slight inability to catch my breath doing the most mundane thing. Having been down this road twice before--and having learned my lesson after contracting pneumonia from being stubborn and stupid, I recognized this for what it was. The GvHD in my lungs hadn't resolved.

It takes 14 days for steroids to leave your body. Prior to this episode I'd been on a two week taper interval. I'd been taking 5 mg of prednisone per day for 14 days before I finally stopped. December 26 marked 13 days from my last dose. Close enough.

My transplant doctor saw me on 12/30. She looked me over and listened to my lungs. Much to her surprise, my lungs sounded perfect. What can I say? I'm her outlier. She started me on 30 mg of prednisone and had me come back 2 weeks later. I saw the pulmonary specialist, my transplant doctor, had a CT scan, pulmonary function test (PFT), and a 6 minute walk test.

I confounded both doctors once again. The results of my 6 minute walk test fell firmly in the middle range of normal for a healthy person. My oxygen saturation never fell below 98%. My CT scan showed some slight improvement in the areas of ground-glass opacity (pneumonia) over the CT scan results from 12/4/13. My lungs sound clear. My lung volume has fallen from 67% to 57% in less than a month. The pulmonary specialist can't explain it. She wants me to repeat a PFT in 6 to 8 weeks. She also asked me to pursue more vigorous exercise in addition to the breathing treatments and steroids and stair taking. She told me of all her patients, I'm the one most vigorously pushing to get better. You better believe it.

So now I'm walking on the treadmill at a 10% incline for at least 20 minutes a day. I try to do more, but some days don't have enough hours. I'm also having problems with severe foot cramping, which does interfere with walking on occasion. Steroids.  Can't do a thing about it.

There are some other steroid related issues that you'll be familiar with from past blog posts. Severe mood swings. Insomnia. Constant shaking. Weight gain. Let's just say I'm super fun to be around on any given day.

The good news is that my team wants a quick taper. The bad news is that they're worried about permanent adrenal atrophy due to steroids. Yay. I'm currently alternating 30 mg of prednisone with 15 mg every other day. We'll see what the doctors want to do when I see them next at the end of the month.

I'm also scheduled to see my endocrinologist in February. He's got a fabulous sense of humor, so I can't wait to see what his take is on all of this.

I continue to stay busy at work and the cats and Chris are on top of things, so no worries there. My hair is slowly starting to fill in. More salt than pepper these days. You can still see my scalp, but it's not quite as obvious and people don't stare as much. I do realize that it will fall out again at the end of this and that's okay with me, so long as I'm still breathing.