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  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


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.