Friday, June 27, 2014


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.