Friday, October 30, 2009

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!

Monday, October 26, 2009

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 to find them. Search under "Doing Death
Better". A couple of them were written by officers of major health

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!

Sunday, October 25, 2009

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!

Monday, October 19, 2009

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, October 17, 2009

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

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!

Friday at the ThyCa Conference

Hi Y'all,

Friday was a very productive and informative day followed by a fun and
relaxing evening.

The conference is set up so that there about 6 comcurrent sessions
going on with short breaks between each. Each session lasts from 45 to
75 minutes. Hopefully during each time slot you can find something
that you are interested in. We learned quite a bit today. One session
talked about bringing new drugs to market from the perspective of a
drug company and the issues they have. The speaker was VP of a
company that has been in business 15 years, has about 700 employees
and still does not have a single drug approved. But they are very
close to one that helps medullary thyroid cancer. Can you imagine? 15
years of spending money (about $1 billion by his estimate) and not
having a single dollar of incoming sales? Talk about having to sweet
talk your imvestors!

We also attended 2 sessions dealing with targeted therapies, like the
Nexavar I am on now. It seems like these are finding a lot of success
in slowing the progression or even shrinking tumors but they are not a
cure. Because they are not acheivimg cure there is doubt that the FDA
will approve them for for thyroid cancer use. They want cures - not
temporary stopgaps. One doctor compared them to a roadblock, they do a
good job of stopping traffic for a while but eventually traffic finds
a way around the block. So in a year or 2 I will probably be looking
for a new "roadblock".

After we were meetinged out Charley picked us up and we has dinner
with he and Kathy at their home. We could not have asked for a better
evening! The food was as delicious as any I have eaten and the
companionship was even better. The night flew by and before we knew it
we were back at the hotel, very tired and very content.

Saturday should have more great information and then the annual
fundraising dinner is tonight.

Talk to you again soon.

Be Well - Be Blessed

Sent via mobile phone

Thursday, October 15, 2009

Ready for Conference

Thought I would give you a quick update since I have a little time. I
heard the final word from the doc today that they will not attempt
radiation treatments. He reviewed the films of my prior treatments and
it confirmed his decision. I made an appointment with the nuclear
medicine department for next week to discuss the radiopharmaceutical
treatment. Lots of questions to ask there. And as I said last time I
will be meeting with the surgeon at the end of the month to discuss
that option. One more option is to seek a 2nd opinion on the radiation
- I just have to find someone I trust to give me one.

Arrived in Boston tonight, the weather here is a carbon copy of the
weather we left, cold and rainy. My friend Charley was kind enough to
pick us up at the airport and deliver us to our hotel. His wife Kathy
even put together a "goodie bag" of snacks and information about the
Boston area! How incredibly thoughtful! We are getting together for
dinner tomorrow night with them and hope to do some touring Sunday.
Charley owns several accessory stores and has been a wonderful mentor
of mine for many years. He was instrumental in getting me involved in
the SEMA trade association and correctly told me "you will get far
more out of it than you ever put into it". A true class gentleman.

Big day tomorrow - better hit the hay and be ready for it.

Be Well - Be Blessed

Monday, October 12, 2009

No "Home on the Range" here

Today we heard a discouraging word and the skies were cloudy all day. Hence today's title.

Today was my appointment with the Radiation Oncologist to talk about the possibility of radiation to the tumors in my thoracic spine. The purpose of the radiation would be to shrink the tumors and give me relief from the chronic pain. The doc that administered my last dose of radiation (to my legs after the surgery) is out on leave so we met with a new doc today. I never like changing in midstream but he did a good job of understanding my case and thoroughly explaining everything.

What we learned is that he is "pretty sure" that he will not be able to safely radiate that area. I actually had radiation twice in the same area when I was being treated at Waukesha Memorial; the first time when they did my lung to stop the blood I was coughing up and the second time when they did my spine and ribs to relieve pain. What do my lungs have to do with it? When you shoot radiation through the body it goes through the whole body, doesn't just stop at the area you want it to so that means it went through my lung to my spine. The risk now would be administering too much radiation to my spinal cord which could cause paralysis. Paralysis would definitely be bad! There is still a small possibility that we could go ahead because the doctor did not have the actual films of the radiation I had before, only the printed reports. He is going to order and examine the films from Waukesha but he was highly doubtful it would make a difference in his opinion. I will know for sure later this week.

So where do we go if we get a definitive NO? There would be a couple more things to look at. First is something called radiopharmaceuticals, radioactive chemicals that they inject directly into your bloodstream. From the bloodstram they are attracted to bone. I don't know much about them yet but I understand they are not always successful and, like everything else, there are associated risks. I have to learn more about them and see what the docs recommend. Surgery is still another possibility - I have an appointment at the end of this month with the surgeon who did my back in May. We'll see what he has to say about the chances of success. The last choice is to do nothing - just keep managing the pain and live with it.

Speaking of pain - we made a change in the way mine is managed. I am now back on pain patches - they are a transdermal system that you stick on and change every 3 days. I have been on them before and they seem to work well for me. I think they give a more consistent delivery of medicine than the long-acting pills I was taking. This has allowed me to reduce the amount of short-term pills I take during the day which is a welcome thing.

Big weekend coming up! It is the ThyCa: Thyroid Cancer Survivors Association national conference. This year's event is in Boston. Jessica and I are leaving Thursday afternoon and will come home next Tuesday. We are staying a couple extra days to visit friends and tour the city, as neither one of us has ever been to Boston. ThyCa is the association I did the fund raising for at my birthday party in April. We are hoping to learn something new about the trial drugs out there, but the biggest benefit is in meeting more people who are in situations like mine and learning from the most prominent specialists in the country. The speaker's list is a literal Who's Who of endocrinologists, oncologists, surgeons, even dentists who specialize in dealing with Thyroid Cancer and it's effects on the body. You may remember we went to the conference in St Louis last year. That is where I learned of the doctors at Froedtert who I am working with now. I also met a few patients who I still stay in touch with. One friend in Texas is now taking Nexavar, the same drug I am on. He is coming to Boston also, it will be good to see him and compare stories.

Because of our travel I am not sure when I will be back to you again. I will definitely give you an update when we get home but I am not sure how much time I will have to post over the weekend. I will keep you up to date as best I can.

Be Well - Be Blessed!

Wednesday, October 7, 2009

Hi All,

Here we are again, after only 1 week. I'll keep trying! I just wanted to update you on a few things.

First off - I have an appointment next Monday with a Radiation Oncologist to talk about the possibility of radiation to my spine. I have not been told any more details than what I learned last week but I'm hoping that the fact that they want to talk to me means that there is a good possibility they can go ahead. As you can tell I prefer to remain optimistic!

The cranes I told you about last week visited us again the day after I posted those pictures but since then they have abandoned us. We occasionally still see up to 5 cranes in the soybean field behind us but they have not ventured into our yard to visit.

I'm still in mourning over the Packer loss on Monday. It was a great night for Favre but a bad night for those of us left here in Wisconsin. Ouch!

I'll be in touch again soon!

Be Well - Be Blessed