So Many Doctors - So Much Confusion!

Hi y'all,

I told you last week I had an appointment with the neurosurgeon this week who did my back surgery in May. The purpose was two-fold; first to follow up on the May surgery and secondly to get his opinion on what to do about the new lesion in T6. Remember last week the radiation oncologist suggested stereotactic radiation to T6 and wanted to act quickly.



First the follow up news - good things here! My X-rays showed no movement of the hardware and actually showed bone growing into and around the hardware. Turns out this is a really REALLY good thing because the jack (which holds the vertebrae apart) that he put in has been recalled!! My body parts are being recalled!! Turns out some of the jacks are settling and not maintaining the proper spacing. But because mine has not settled and has good bone growth around it, it does not have to be replaced. WHEW!! For about 30 seconds there in the office I was ready to either sue or kill someone.



Now his opinion on the new stuff. After studying my MRI and CT scans he poked around my back trying to isolate exactly where the pain is coming from. After checking me over he is not convinced it is coming from the T6 tumor. When he isolated the pain he taped a metal marker on my back (paper clips! my insurance company will probably get a bill for some hi-tech thingy) and sent me out for another X-ray. That showed the spot to be 2 or 3 vertebrae down from the T6. So now what? Get hi-tech focused radiation done to an area that we are not even sure is right? I don't think so! I asked him what his plan would be if I wanted him to operate, he said he would probably run rods almost the full length of my T-spine (the center part) and secure them at each vertebrae. (Remember I have tumors at almost every vertebrae in that area.) It seemed to me that this would limit my flexibility a lot but he said not really because most of our bending is done at the top (cervical) and bottom (lumbar) sections of our spine. We discussed my pain level and I told him that actually the last couple of weeks it has been pretty well controlled and I am not suffering a lot from it. After much more discussion with both him and my oncologist we decided that the most prudent course of action would be to wait to see what happens to my pain level since the whole point of any procedure would be to relieve my pain, we're not curing anything. I have more CT scans scheduled in about a month so the plan is to compare those to the ones from 30 days ago and see if there is any progression. I have very little available radiation left to work with so let's not waste it. Hopefully the pain stays under control and there will be no need for any more procedures for awhile. Let's say an extra prayer for that!



So let's move off the bones and into my stomach. I am still fighting the heavy duty diarrhea and stomach issues that started over a week ago. This week they asked for a stool sample to check for any bacteria or cultures. Today I found out those tests were all negative (which is good!) but I kind of knew that because the doc had started me on an antibiotic a few days ago and we saw no improvement at all. They usually work fast to fix those types of things. So now what? After talking with the oncologist today we decided to suspend my Nexavar, since that seems to be the only culprit left. It does NOT mean I will be off it forever, or even a long time, but I need to be off of it long enough to get rid of all remnants and let my body readjust to life without it. Many many times, it turns out, patients need to take a "vacation" from these types of meds. So if things go well I may be put on a revised schedule like on for 6 weeks, off for 1 (or something like that). I DEFINITELY do not want to go off the Nexavar but at this point I don't have much choice. I can't go on rushing to the bathroom 6-12 times a day. So I would appreciate any prayers to help me and my docs make the right decisions as we go forward.

Be Well - Be Blessed! Luv you all!

Do Your Family A Favor

Hi again. Just so you know this posting is a cry for help. Help for
YOUR FAMILIES. Please give it serious consideration.

In Sunday's Milwaukee Journal Sentinel there was a series of articles
written regarding death and dying and the way we as humans deal with
it. It is a very thought provoking series. I'm sorry that I could not
come up with the proper links to show you the articles. Feel free to
poke around www.jsonline.com to find them. Search under "Doing Death
Better". A couple of them were written by officers of major health
organizations.

The crux of the articles is that we avoid talking about death and our
wishes about how to die until it is too late. I don't know if most
people believe they are going to get hit by a truck and die suddenly
but the fact is most of us will die a little more slowly than that and
require decisions to be made about our care. And many times we will
not be in a position to make those decisions ourselves. Do your loved
ones know what your wishes are when it comes to those decisions? Or
do you expect them to "play God" and make life-and-death decisions
about you without really knowing what you want?

The answer is Advance Directives and Power of Attorney for Health
Care. If you do not have these documents filled out please do it
ASAP! I'm sure each state has their own rules about these but you can
download the forms off the Internet and fill them out without having
to pay an attorney. Make sure you follow the instructions for having
witnesses sign them.

Jessica and I have had ours done for many years, in fact I made
changes to mine a couple years ago. Any hospital I go into gets a copy
and of course we have copies at home and at our attorneys office. "Of
course you do - you have a terminal illness" you will most likely say
but we had these done many years before my disease became serious.

These are very personal decisions and are not always easy to make
but they are YOURS to make, not your spouse or child or other
relative. Please do not burden them with that when they are already in
a stressful situation. Some people will want every effort and machine
used to keep them alive for as long as possible, others have no desire
to live in a vegetative state.

If I convinced even one of you to do this then this post was worth it.

God Bless You All!

Tough Week

Sorry I've been away for a few extra days. I've been a pretty sick
puppy since I got home from Boston. I think I must have picked up
some type of stomach virus cuz my belly has been a-rockin' and a-
rollin since Wednesday. It has gotten slightly better each day but it
sure is slow to leave.

If you remember I told you a while back that they had declined to
give me conventional beam radiation to the new lesion on my spine
because it was too close to areas where I had radiation treatments
before. Thursday I had an appointment with a new doctor that
specializes in unique types of radiation. We were asking about
radiopharmaceuticals, radioactive isotopes that are injected directly
into the bloodstream. But after consulting with this doc he came up
with a new idea - stereotactic radiation. Sound familiar? If you have
been following my saga it should, this is the same type of procedure I
had done to my brain last November. It is a highly accurate form of
radiation that delivers a very high dose with pinpoint accuracy. A
ThyCa friend I have in Texas had this done to his spinal mets a year
or so ago and he described it as being shrink-wrapped to a table when
it was done. Obviously to get the kind of accuracy they need they
cannot allow any movement at all. The main risk is permanent spinal
damage if for some reason they "missed". I am told that they
currently have a 2mm window in which to work. I asked about a
percentage of risk and he could/would not answer. Normal radiation to
the spine has about a 5% risk, each time after that it goes up. All
he would say is that the risk is considerably more than 5%. I didn't
like that answer.

I have 2 appointments this week - 1 is regular monthly follow-up with
my oncologist, the other is with the neurosurgeon who did my back
surgery in May. We will ask his opinion on surgery to this new lesion.
After we talk to him then hopefully we will have enough information to
make an informed treatment decision. I have been advised not to wait
because that 2mm window could close up.

Lots of heavy duty info to absorb, and all just to relieve pain.
Whatever happened to being able to pop a few pills?

I'll be back to you with more info soon.

Be Well - Be Blessed!

Last Day in Boston

Here we are, the Monday after the conference and we are still busy.
Sunday we finished things off by listening to a few more presentations
which were interesting. The weather was so crappy (if you watched the
Patriot game you know what I am talking about) that a lot of people
left the conference early because they were afraid of travel problems.
Unfortunate for them because Sunday's program was just as good as the
other days.

I was tired as all get out so we laid low the rest of the day and
evening, grabbing a quick dinner in the hotel. Early to bed!

Today our friend Kathy picked us up and she and Charley combined to
take us for a driving tour of Boston and the northern coast. I am so
thankful that they did that. There is not a straight road in the
area. If we had rented a car we would have been lost a dozen times
over, even though I have a built-in GPS system in my head. Very
scenic area. We will have to come back some time when I am healthier
and have more time.

Tonight will be similar to last night - lay low, eat light, and go to
bed early. Tomorrow we fly home.

We'll talk again soon, all you guys who complained about me not
updating my blog be sure to compliment me now!

Luv ya all.

Be Well - Be Blessed

Saturday's Conference Highlights

Another great day at the ThyCa conference. We started early listening
to Dr Tuttle, one of the country's leading experts on advanced thyroid
cancer. I think he is half doctor half comedian because he kept us
chuckling while delivering some very important points. Dr Tuttle is
one of those docs that you have to either be REALLY sick or know
somebody to get an appointment, but he gives generously of his time to
ThyCA. His information was quite helpful. The other highlight for me
was being able to talk one-on-one with a nuclear testing specialist.
He literally wrote the book (I have it) on clinical testing for
advanced thyroid cancer. He gave me a couple suggestions to research
on my situation concerning my back. Outstanding! I like having options.

Tonight was the fundraising banquet, and I got a suprise. As we were
walking in the door I was approached by the executive director of
ThyCa who asked me to get up and say a few words about my experience
with the organization and ask people to be generous tonight. WHAT???
You ask me to do this with about 10 minutes to prepare?? I declined
at first but then the old Catholic altar boy guilt settled in and I
told him of course I would. This organization has done so much for me
the least I could do is stand up and stammer in front of 200 people.
It went fine, even though my voice was a little shaky. I told the
story of my birthday party and the generosity of all of you! So
thanks again for your donations and for giving me something to talk
about.

Long night, even though it is still early. I had the first beer
(actually 1/2) since my party in April. I'm off to bed!

Be Well - Be Blessed!