We lost a Good Friend and Man

Jessie and I had so much stuff going on this past week that I have not
had a chance to tell you about the loss of our good friend Dan. I may
have written about Dan before, he has been struggling for a long time
with cancer. A while back he got tired of the constant invasive
treatments and decided he wanted to live out the rest of his life on
his terms. As his health deteriorated he entered a home hospice
program where he could remain at home and have a nurse in to check on
him weekly. He remained under this program until his last few days
when he entered a full time hospice. He passed away last Monday morning.

I got to know Dan and his wife Denise when I met Jessica, they were in-
laws from her first marriage. As is the case in many divorces you keep
some of the in-laws as friends. We all remained friends for the 30
years I knew him.

I'll share one interesting habit Dan had - he collected obituaries.
If it was anyone of local or national recognition he would clip their
obit and keep it in a scrapbook. He had volumes and volumes of them.
Looking through his books you might find John Wayne or Ronald
Reagan or you might find Mister Ed. They were all chronicled in his
books. It made for an interesting visit if you grabbed one of his
books off the shelf when you were there.

Dan was only 60 years old. He served our country in Vietnam and was
retired from the MMSD. He had a strong faith in the will of God and
Jesus Christ. And as sick as he was he always showed concern for me
and my health. If you have been following this blog for a while you
may remember me writing last year about the passing of our niece
Angie. Angie was Dan & Denise's daughter.

Denise has lost her daughter and her husband in just over a year. Both
were way too young to leave this world. Please remember to keep Denise
in your prayers. The celebration of Dan's life will be this Saturday.
We will miss him.

More Excitement at the Pelt House

Well, just when I thought things had settled in and we were ready for
a comfortable Christmas life throws yet another curveball at us.

Last night Jessica started complaining about a stomach ache in the
early evening. She took the standard Tums which normally works for her
and had a light dinner of soup but the pain persisted. Then it got a
lot worse, she was moaning in agony and I felt helpless because
nothing seemed to make her more comfortable. Finally, a little after
midnight, we decided going to the ER was a prudent idea. Since I still
can't drive I called (and woke up) my sister-in-law Terry and asked if
she would drive us. They live only about a mile from us so she was at
the house within 15 minutes and off we went.

And a darn good thing we made that decision. A couple of quick
examinations by the doctors and a CT scan revealed that Jess had
appendicitis. There was an on-call surgeon at the hospital already so
he made arrangements for an operating room and she had surgery within
a couple hours. Fortunately we came in before her appendix had a
chance to burst so the surgery was straightforward and could be done
lapriscopically. The operation went perfectly and as I write this
Wednesday afternoon she is resting comfortably in her hospital bed.
She should be able to go home by tomorrow morning.

No one can say that we haven't had our share of emergencies and
exciting events this year! Christmas will now be even more low key
than we planned. We will have to see how well Jess is feeling before
we determine how much visiting we can do.

Jessica is doing well but please keep her in your prayers as she goes
through the recovery process. I know she will appreciate every
blessing sent her way.

Be Well - Be Blessed!

Ken

Pre-Holiday Update

I got lazy last week and didn't update you after my doctor visits.
Sorry about that! By now you know that I am at best inconsistent in
my postings but I do try.

Tuesday we met with my oncologist and talked about a number of things.
First off I told him about my lightheadedness and dizzy spells and
asked to be taken off the blood pressure medication. After checking my
pressure several times in the office he agreed that the med was
keeping it too low and took me off of it for now. We also talked about
going back on Nexavar, which is the cancer med responsible for
shrinking or maintaining my existing tumors. I expressed that I wanted
a little time to recover from the hospital stay, maybe put on a little
weight and gain some strength before subjecting myself to the side
effects again. After all, I was under 150lbs when I left the
hospital! I didn't want to start with diarrhea when I didn't have any
more weight to give. Not to mention dealing with the other side
effects before I had even gotten used to feeding myself through the
tube. The doc agreed with me, although he wants me back on it as soon
as I think I am able. We both thought about a month should be ok.

The one thing he would not agree to is me eating anything at all by
mouth. I was hoping to get his blessing to take liquids or even soft
foods once in a while but he shot me down. Actually he said that of
course he couldn't stop me but just know that I am taking a serious
risk every time I do. The infection they found in me was pretty
serious and they don't want me risk another. I reluctantly had to
agree. We finished up by making sure all my meds were either
available in liquid form or talked to the pharmacist about dissolving
them in water. Everything I'm currently on works one way or the other
so for now I'm all set. When I go back on Nexavar there are a few more
we will have to check out. The Nexavar is fine to dissolve but some of
the meds that control the side effects will have to be checked out.

Friday I saw the surgeon who did my lung surgery. After checking out a
fresh chest X-Ray and removing the stitches from my incisions he
pronounced me fit and said he didn't want to see me anymore unless it
was at a party. I liked that-less doctors to visit.

At home I've got my feeding down to a system. The dietician at the
hospital gave me permission to use some of the other readily available
canned supplements like Ensure or some of the other brands. Some of
these have more calories packed in the same amount of liquid so I can
take less volume and get the same amount of nourishment. That helps
prevent the fullness and bloating which has made the whole process
much easier and more comfortable.

So after all that medical talk - are you ready for the holidays? I've
been sitting on my butt watching Jessie working hers off to get things
ready at our place. Sometimes you have to wonder if all this work is
neccessary. But she always makes our holidays wonderful and
comforting. It looks like Christmas Eve will be just Jessie and Peter
and I so it should be a relaxing evening. That's a good thing since I
don't have the stamina to handle a lot of partying this year.
Christmas day will be a little busier but I should get through that ok.

Thanks for checking in with me again. I wish you all a relaxing and
comforting Christmas! Remember to keep the reason for the season in
your celebrations.

Be Well - Be Blessed!

Ken

Highs and Lows at Home

So we made it through a full week at home. I've adjusted somewhat to
the tube feedings. It's still a major pain dragging out the syringes
and stuff 4 times a day to "eat" but I guess it's not that much
different than cooking something that often. It's just that I never
ate 4 major meals in a day. It's also the fact that Jessie is now
cooking only for herself. I think everyone would agree that cooking
only for yourself gets old in a hurry, especially when you are used to
cooking for someone else.

Friday we had the Deacon from our church come out and give us
communion. I had inquired about alternatives to getting communion by
mouth. Turns out he has at least one other parishoner with a feeding
tube and they dissolve a piece of the host in water and take it in
through the tube! I never even thought of that but it worked well. I
just have to flush the tube well to make sure nothing clogs it. He
also gave me a Pyx which is a brass container for transporting
consecrated hosts. Now Jessie can go to mass and ask for a host to
bring home for me in the Pyx. We visited with Deacon Greg for over an
hour and had a nice afternoon.

I had a little scare yesterday. I invited my brother over to watch the
Packer game. When he got here I got up out of my chair, walked the 6ft
to open the door and as soon as I opened it for him my head went
spinning and I went down like a sack of potatoes. Cracked my head
against the door pretty good but survived with no major damage. I
dropped too quick for Jerry to reach and help me so I scared the
bejeebers out of him. Since I have been home I had a few dizzy spells
when I stand up but nothing with a delayed reaction like this. I've
had some medication changes and my blood pressure has been lower than
normal so I'll have to talk to the doc about further changes.

Jessica has been a busy little Christmas elf getting ready for the
holiday. We got behind because of my hospital stay and I told her we
didn't need to do anything this year but she wants to have the house
decorated so she has been busy putting up the tree and setting up
stuff inside the house. I of course did nothing outside but I have not
been real diligent about that in recent years anyway. Our neighbors
all do a bang-up job of putting out lights so we just bask in the
results of their hard work. Thanks again to my awesome group of
neighbors!

I've got a couple follow up appointments this week so if anything new
comes up I'll let you know.

Be Well - Be Blessed.

Ken

Settling In at Home

Hi y'all!
I've been settling in here at home with fits and starts. This
adventure has been a little tougher than u thought. The "food" (I
never know what to call it) I have is extremely rich and full of
fiber. The goal they have given me is to get up to 2 cans of it 4
times a day. I was told that I should be able to get there in a few
days but so far it's not happening. Way too rich way too soon - I got
extremely sick the first time I tried it. So I'm learning little by
little what my body can tolerate as I go along. A full "meal" 4 times
a day is more than I ever ate before any of this. But in order to put
weight back on I'm going to have to up my input. I am getting there
little by little. I know it has only been a few days but my patience
has always been short. I want it all and I want it NOW!! I will get
to my goal soon I am sure.

Not much else new to report. For those of you not from the area we got
slammed with a major snow storm here the last couple days. About a
foot of snow and with lots of wind and drifting. Another opportunity
for me to feel useless since I can't assist with snow removal. I feel
like a schmuck watching my wife go out and do the stuff I should be
doing. But on the positive side it also brought out the best in some
of my friends and neighbors who were all over themselves to help us
out snowblowing, plowing, and shoveling. Thank you all so much for
your help! I am truly blessed to have you in my life.

I'll be back in touch soon.

Be Well - Be Blessed!

Checking Out of The Spa

Everybody all together now - ready to yell "WOO HOO". I finally got
released today, actually late this evening. I have to compliment the
doctors and nurses for cooperating and working together to get me out.
I probably should have stayed another night to do more testing of my
feeding tube but sometimes enough is enough, you know what I
mean?

When we got home there was a delivery truck waiting with our order of
food and supplies that I will need to get me through about a week.
There was also a nurse waiting to give me more tips and instructions
on using my feeding tube. All at 7:00 on a Saturday night! Now that
is service!

So the next couple days we will try to settle in to a routine and
figure out the best way to handle meds and diet supplements. I can
take nothing in by mouth for fear of aspirating food or water once
again. All meds and food go through the tube; I can't even take a
drink of water! Since I have not had anything in my stomach for 12
days I have to work up to the full amount of food I need.

As far as the future, I'll talk more about that in an upcoming post.
There is hope for change in the near future. But now It's time to get
some rest and get used to my new lifestyle.

God bless each and every one of you for your support, prayers, visits,
and notes. I appreciate them more than you could ever know.

Be Well - Be Blessed!

Ken

New development

Well let's cut to the chase. I learned today that the safest way for
me to proceed is to have a stomach feeding tube put in. All of my
nutrition and feeding would come through the tube. All medications as
well would go through the tube.

My swallowing test was a total failure, after just a few attempts they
cancelled the test all together. They were worried about causing more
permanent damage. The theory is that my body was healthy enough up to
this point to free itself of infection but now my body has become
compromised enough that it will not heal itself anymore.

So tomorrow I get the tube put in and then I need to learn how to use
it which might be a day or 2. I am hoping to be home Thursday night.

This is a major lifestyle change for both Jessica and I. So much for
going out to dinner as an event.
In the meantime I willing be working on neck excersises that may allow
me to resume a standard diet over time. That's the theory anyway.

I appreciate the prayers and well-wishes you have all sent my way.
Please say an extra hard prayer for me tonight.

Love U All,

Ken

News Flash!

Just got the 2nd and last chest tube out! One less leash and one step
closer to going home.

I'll fill you in more as news becomes available.

Update

I'm still here in the hospital. It's the middle of the night and I
thought
I would make use of my insomnia time. Who can sleep in a hospital? I
know that I do sleep but to lay down at night and get a solid block of
4 to 6 hours is impossible. Too much noise, too many interuptions, too
many odd smells, even the high-tech air bed seems to fight you.
Anyway it makes for long nights and days.

I have made a little progress the last couple days. They removed one
of my chest tubes Sunday, the 2nd one is still draining so it remains
in. I am also breathing on my own, without the help of additional
oxygen or breathing treatments. I still work at coughing up the gook
but I do it on my own. Plus they removed my catheter! I have never
been anywhere that is so interested in my pee and poop as a hospital!
Funny in one respect but actually very important. Most importantly I
have gained a lot of strength back; I took a long walk with the
therapist today and also have been getting up and moving on my own
quite a bit. I still have a lot of attachments with the tubes and IV's
and all so it makes it hard to move around without helpers. Jessica
has become an expert at helping me!

I have been receiving IV antibiotics almost constantly since I got
here, they have identified one of the infections in my lung but there
is another that they are still working on. I guess it is a lot
different on TV where they can identify this stuff at the snap of your
fingers.

Monday I am supposed to have a swallowing study where they can somehow
video record how I swallow. (this got delayed from a couple days ago)
From there they can see if there is some defect in my body or in the
way I swallow that causes my problem. I'm sure hoping they find
something to help. I'm also hoping they can remove the other chest
tube as the nurses tell me they see very little drainage happening now.

I hope that tells you enough because it is about all I know other than
grisly details about each of the general things I mentioned. Please
know that I am deeply moved and thankful that you care enough to keep
up with me. Love you all.

Ken

Saturday Update

Still here in my itty bitty hospital room/jail cell. Friday was a
phenomomally bad day, it seems like any little thing that could go
wrong did go wrong. I won't bore you with the details but suffice it
to say that I had been a model patient until yesterday and now the
nursing staff quickly found my crabbier side. I kept being told one
thing and then the opposite (or nothing at all) would happen. Very
frustrating. Plus I was operating on very little sleep the last few
nights. I will compliment them on the fact that they worked hard at
getting me some rest last night, I feel much better today.

So I am pretty much in the same place I was Thursday but a little
farther along in my healing. I have 2 chest tubes still in and
draining and I am still working on coughing the gook out of my lungs.
I got 1 unit of blood yesterday and am due for at least 1 more today.
Evidently there are some blood levels that keep dropping that they
don't like and fresh blood is the only way to replace those chemicals.

I did get out of bed about 4 times yesterday for various things which
is a lot of work but also good for me, I need that action moving
around and using my muscles. Strange how just maintaining your
balance can be so much work!

I have no idea when I will be sent home to finish healing. I know I am
nowhere near ready yet. I would hope the tubes can come out in the
first part of next week and then I can work on strength building and
breathing better. We'll see what happens.

Thanks again for all of your support. I thank God every day for so
many wonderful friends and family.

Be Well - Be Blessed!

Thanksgiving

Well Thanksgiving day has come and gone. I have so many things and
people in my life to be gratful for that I'm going to save that whole
explanation for a seperate posting. I want to keep you informed of my
progress.

I spent all of the day Thursday between my bed and my chair. I was
experiencing quite a bit of pain but the nursing staff did a great job
of helping me keep it under control. I have my little friend, the pain
pump button, and when things get too rough I can hit the button for a
shot of relief. I am also still on the patch that I have been wearing
and taking Tylenol as well. I had a few visitors during the morning
which was very nice but we kept getting interrupted by nurses,
doctors, and techs trying to do their jobs. I guess morning is not the
best time to visit.

I have also been receiving regular breathing treatments to help clear
my lungs and airways of any gook (medical term there). The treatments
are through an inhaler (potheads - think bong) which allows the
medication to reach all the small airways and air sacs in my lungs.
They usually cause me to start coughing up the gook which really makes
me breathe better. I still have the lung drainage tubes in and a lot
of the gook goes out that way as well.

Friday I am scheduled for a swallowing study where they are supposed
to be able to diagnose any problems with the way I swallow. Since they
believe the cause of this whole episode is that I aspirated some food
or liquid this study might help a lot. Anyone who has eaten with me
lately knows that I am prone to coughing and choking while eating.
That makes
It very easy for food to go down the wrong pipe.

Well they have been coming in to start prodding and poking so I'll
sign off. Thanks for staying in touch and I'll be back to you soon.

Be Well - Be Blessed

Ken

Surgery A Success!

Just a quick note to let you know everything went smooth today. The
mass was an infection, NOT cancer. They drained as much of the fluid
as they could (it was about the size of a lemon) and left a couple of
drain tubes in me which they will remove in a couple days.

Right now I am very sore so I am cutting this short to rest.

God Bless You All!

Ken

Back in the Hospital Again

Well isn't this a fine kettle-o-fish I got myself into. Here I am -
back in hospital unexpectedly. Monday I had my regular 60 day follow
up scans and bloodwork to see how the fight between my tumors and the
Nexavar is going. I have felt lousy and had a nagging cough for the
last 3-4 weeks so we called ahead and asked if there was some other
test they could run to find the source of the cough. They replied that
the CT of my chest should show them anything and that they would keep
an eye out for my results. Well they were watching close because they
called me before I left the hospital and asked me to come right up to
the office. There the doc told me I have something in my lung which
should not be there. They are pretty sure it is an infected mass but
need to find out for sure. Because I have "compromised" (already have
tumors) lungs they view this as very serious - they wouldn't let me
go home, I was admitted immediately to the hospital. I was so happy.
NOT!

Of course this mass is in a spot that is not able to be accessed via
needle biopsy so they have to knock me out and cut me open to get a
sample from it. That is scheduled to happen Wednesday morning. In the
meantime today I am having pulmonary function tests and a couple other
teststo keep me busy today.

Today (Tuesday) has been a series of waits and rushes. Jess and I
were hanging out in the room doing nothing for a long time so we
ordered a late lunch. That's when a line seemed to form at the
door. Between doctors, therapists, anesthesiologists, nurses, and
physician assistants we saw about 10 people over the course of about
45 minutes. And then they took me to get another X-Ray. Needless to
say lunch had to wait.

So I'll update you as soon as I am feeling well enough. I appreciate
you keeping up with my plight!

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!

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

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

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!

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

Test Results

Wow - you're hearing from me again so quickly! I'm glad to be doing a better job keeping you in the loop, but I will warn you that this posting is nowhere near as fun as the last one. I am going to bore you with technical health news. If you are interested only in the “bottom line” skip down to the last paragraph.

Today (Tuesday) I had my appointment with Dr Wong, my oncologist, to review the results of my scans from last week. I have told you before that I have several tumors already established in my spine, most of them in the thoracic (middle) and lumbar (lower) sections. The MRI showed a few of these had increased in size, a few had not significantly changed, and I have at least 2 new ones. Exactly which of these is causing my current back pain is still unknown and Dr Wong wants to get some more opinions from a Radiation Oncologist and a back surgeon. At this point we are looking at 3 options. The first is do nothing and try to control the pain with medication, the second is to use radiation to shrink the tumor(s), the third is another back surgery. My preferred option is radiation but I may not be eligible for it because I have already had radiation treatments to that area of my back. Evidently there is a maximum amount of radiation “juice” they can shoot you with so they have to determine if I have hit my max and also get an opinion on how successful this would be at relieving the pain.

This latest MRI was compared to the last one I had in April. This timing is important to keep in mind because I started on Nexavar in June. That means that there were 2 months where I was not on a systemic drug and any changes in the lesions could have occurred during that 2 month time span. So we have no way of knowing if the Nexavar is doing its job on the spinal tumors. But since we know it is helping the tumors in the soft tissue we are going to assume that it is working on the bone tumors as well.

I also had CT scans of the neck, chest, and abdomen. These scans I get every 60 days while on Nexavar and they are used to track the progress of disease. (These are the ones that showed the shrinking tumors back at the beginning of August) These most recent CT’s showed very little change from the ones 60 days ago. I view that as good news – stable is much better than progression!

Just a side note - Has anyone ever read a report from a CT Scan or MRI? These are the reports that the Radiologists write up after examining the scan films. I have been asking for these reports and reading them for the last couple years and I still have to read them next to a computer with internet access. I read a sentence, Google a few words, read a sentence, Google a few words, etc, etc. After about 15 minutes I can get through the half dozen paragraphs and understand about ¾ of it! I guess I should have taken biology in high school instead of that extra year of physics. If I only knew……

Anyway – enough technical talk. The bottom line is this: most of the tumors are stable but I have growth in some areas of the spine. These areas are causing significant pain and a little more homework is being done to find out the best way to relieve that pain. It may be a week or so before I have that information, I’ll let you know when I have it.

Hey - Thanks again for caring enough to read this junk!

Be Well - Be Blessed!

Unexpected Visitors

Hi y'all,

I thought I would share some pictures of visitors we have had at our home the last few days. These are Sandhill Cranes that seem to think they have found a new home. We have seen cranes before in our backyard and in the soybean field behind our yard but now we are seeing them up close. We heard some rapping at the door of our basement walkout, it turned out to be these birds. We are guessing that they are probably pecking at their reflection in the windows. It was very suprising to see these 3 "big birds" standing on our patio. There are 2 males and 1 female who have been hanging around for several days. Our assumption is that they like the soybeans as well as the apples and hawthorne berries that we have in our yard. They are pretty skittish and move away quickly when they detect motion in the house, so getting good pics has been a challenge. You can check out more pictures here http://picasaweb.google.com/iyamken/Cranes These visitors are welcome to stay as long as they want!

Be Well - Be Blessed!

Lots O' Tests

Hey Friends!
This week I had a couple full days of tests in preparation for my doc appointment next week. My back pain has not eased at all and they want to find the source. Last post I told you about the MRI that the doc wanted of my full spine. I finally had that test on Thursday and it was just as bad as I expected, I was in the MRI tube for 3 hours! I will say that the nurse they had helping me with pain and sedation did a great job helping me get through it. She made a big difference! The Thursday MRI was followed by lab tests and CT scans on Friday, so when I see the doc on Tuesday they should certainly have enough views of my insides to work with. I'll let you know what I learn, I certainly need to find some relief from this back pain. I'm sucking down pain meds like they are candy, which gives me other problems like drowsiness.

What else have I been up to? Well I have been in search of a new hobby since golf seems to be out of the question for a while. I think I may have found something in RC (Radio Control) aircraft. I have purchased an airplane and a helicopter so far. My neighbor Paul is really into this hobby and has been helping me out with flight lessons and advice. I'm lucky to have a large backyard and a farmer’s field behind that so I have room to fly without leaving the yard. Getting the technique down has been tougher than I thought, I have a lot more learning to do. Fortunately these aircraft are relatively easy to repair because I have proven to be a crash specialist. Last week I parked the plane in a tree (in my defense it was pretty windy) and yesterday I did the same thing with the helicopter. Paul was gracious enough to fix the plane and I glued the copter back together. Just like the automotive business there is a big market for replacement and aftermarket parts. I went gaga in a hobby store the other day looking at all the goodies. I'll keep you up to date on what I learn as I go along here. If you are interested in seeing someone who knows what they are doing Paul posts a lot of videos on You Tube that you can check out. Look for postings by pdiddy21154.

I am facing another challenge that is proving to be tough - I am working hard to keep weight on. (ok all you ladies can stop rolling your eyes and wishing you were me). Most of my adult life I have been overweight to the tune of 20-50 lbs. Not today! I'm weighing in at about 170 (that's 77 kg for my European fans.). Jessica is working hard to keep me eating and make the most out what I eat. She now buys her food and my food. I get whole milk instead of skim, full-fat cottage cheese & yogurt, etc. We met with a dietician at the hospital who gave us a lot of tips and ideas on adding calories and protein to my diet. I need to eat about 6 times a day instead of 3 and keep adding calories wherever I can. What a switch from how I have looked at things up until now!

Thanks for looking in on me - I'll be back to you sometime next week!

Be Well - Be Blessed

Looking for the older posts?

After many unsuccessful attempts to import my old blog postings into this program I have temporarily given up! But I have set them up in another location. If you want to read any of the older posts you can see them at the following location. http://iyamken.wordpress.com/



The old posts start in summer of when I went to MD Anderson Cancer Center in Houston and continue through June of this year. I'll keep trying to integrate everything together at another time.

Thanks!

A Month's Worth of News

Wow - a whole month has gone by. I'm setting a new record in rudeness. I will tell you that I have been busy, some good busy and some not-so- good busy.


In the last posting I promised you more good news and I have got a couple things for you. First up is that my back surgeon is extremely pleased with the way my back has healed. He gave me permission to wean myself off of the back brace and I have been doing just that. I still wear it when I go out most times since I would rather err on the side of caution. After the long recovery I don't want to have to do it again. More about the back later. The other good thing is that I had another checkup in the LONG time since the last post and my Thyroglobulin level has dropped another 10%. Thyroglobulin is the level they use as a marker of tumor activity. It should be zero but it has dropped from 181 in March to 66 in August. We're headed in the right direction!


Now that I shared the good news there is some tougher stuff to share.
First is recurring back pain. The repair in my lumbar area feels great but now I have pretty consistent intense pain in an area just at the bottom of the shoulder blades. After discussing it with the doc He decided he wants a MRI of my spine. I HATE MRI's. This one should be especially interesting since I cannot lay on my back without pain.
Their suggestion, as always, is "increase your pain meds". They will do what they call a sedated MRI where I am put in a semi-sleepy state. I can hardly wait but it has to be done.


How did you spend your Labor Day? Maybe a cookout with brats, beer, and corn on the cob? Or did you go to the Harley party? Mine was different. I woke up at 7am and took my Nexavar pills. I had trouble swallowing them and they both got stuck in my throat. Could not flush them down with water or food and could not cough them up. I have had similar issues in the past and just waited until the pills dissolved. These pills never did - at noon I still could not move them and could not swallow water- I just choked and spit it back up. (meaning I could not take my other meds) So we went off to the urgent care clinic, hoping they had some secret to dislodging the pills. No such luck. Next stop - ER. After an unsuccessful attempt with a drug to make my throat more slippery they had to call in a GI specialist who knocked me out and went down my throat with an endoscope to dislodge the pills. They were finally cleared at about 5pm. Today I have a very sore throat and am only able to take in liquids. It might be another day or two before my throat heals enough to eat solid food. What a great holiday.


Enough bad stuff - let's finish up with one more piece of good news.
And for this I owe my niece Tracy. Little bitty baby Tracy Pelt got married Saturday! It was a great event and I'm so happy I was feeling well enough to attend. I actually danced with Jessica - OK, it was more like waddling through a couple of slow songs but I know she appreciated the effort! Tracy, like her sister Cyndee, has matured into a terrific young lady. She and Casey, the new hubby, are living and working in Washington DC. You will be glad to know that a portion of your tax dollars go to pay Casey's wages. I'm always happy to learn my excessive taxes are helping someone I know. I wish Casey and Tracy a long, healthy, happy, and blessed marriage.


Thank you sincerely for your patience in waiting for news. I know I have been poor at keeping you informed, at least I've been late in doing so. Your prayers, notes, cards, emails, and most importantly your friendship mean the world to me.


Be Well - Be Blessed
　

Good News - Good News

Hi All,
I have got lots of news – in fact so much that I will break this up into more than one entry. I hate to overwhelm anyone with too much information at once.

I’ll start with the best news – I had CT scans this week to check my progress after 60 days on Nexavar and I found out

MY TUMORS ARE SHRINKING!!!

The doc showed me the scans compared to the one they took in June and you can definitely see that the tumors have shrunk, some by as much as 1/3. You can see this definitely in my lungs and in the soft tissue areas surrounding my lungs. I could not have asked for better news after less than 60 days! I inquired about the bone tumors but was told these lesions do not show very well on scans so monitoring their progress is difficult at best. But logic says that if the soft tissue tumors are shrinking why wouldn’t the bone tumors be doing the same thing? I’m going with that theory. The scan report did say that one of the lesions in the sciatic vertebrae is very close to spinal cortex. Let’s hope that baby is shrinking so we don’t have any more pain issues in the spine.

So the plan is continue on the same course and see if we get more good news in another 60 days. The side effects seem to come and go. The last week or so I have had terrible stomach issues so the doc prescribed yet another medication for me. Pretty soon I am going to have to add an extra cabinet in the bathroom to hold all these meds.

A side note about Nexavar. I received the benefit explanation from my insurance company for the cost of this drug. I was blown away - it breaks down to over $48 per pill! You don't want to drop one of those down the drain! I take 2 pills a day so the cost is close to $3000 per month. Some people would use this information to pontificate about the "crooks running the drug companies " but I have seen the tremendous amount of money it takes to get through the approval process. Until the drug is approved for more uses they have to charge enough to cover the expense. I say a prayer of thanks that there are companies willing to do this research and make a very long term investment.

Enough editorializing. I can’t tell you how happy I am to share this news with you. You have stuck with me through a lot of bad news and lousy test results so it is especially sweet to give you some good stuff. Thanks again – I am truly blessed to have so many friends pulling for me.

I'll be back to you soon. Next issue – more good news!

Chattanooga Trip

Hi all!
Well, I would rate last weekend's trip to Chattanooga as a success - we had a really good time. The travel itself took a lot out of me but we allowed enough time for rest in between events that I did pretty well all weekend. For the record - I did not set off the airport scanners, they must not scan for titanium.

Friday night we attended a minor-league baseball game, the Chattanooga Lookouts against the Huntsville Stars (the Stars are a Brewers affiliate) which was literally right next door to our hotel. Unfortunately the sun was still so intense that I only lasted 2 innings before I had to get out of the heat. We salvaged a little entertainment later that night when the game was over and they shot off fireworks. Our hotel room balcony faced the stadium and we enjoyed a good show right from our room.

Saturday we relaxed all day until the evening birthday party which was a very cool family event. They held it after hours at the Children's Discovery Museum so there were a lot of activities for both adults and kids. We had the run of the museum so the kids (and kids at heart)could investigate all the displays which had everything from a dinosaur dig to a build-it-yourself slot car station. There was an improv comedy show for both adults and kids which was very entertaining and a DJ spun music for dancing. Tom & Lisa did a great job and they had a huge turnout - probably over 150 people. Tom even tracked down a wheelchair for me so I could make my way around the museum. Well done guys!

Sunday we slept in then spent the afternoon hanging out at Tom's house with his family. It was great to sit on his big 'ol porch and listen to his family banter back and forth. Jessie and I enjoyed spending some time with the his big family, we had a lot of fun! After that we had room service dinner at the hotel then headed home on Monday.

As I said the travel itself took its toll on me. We were late catching our connecting flight Monday and had lots of walking at the Atlanta airport before we found someone to give us assistance with a wheelchair. That one event left my legs sore and heavy for most of the week, but I've gotten most of the feeling back now.

So now to answer the most common question I hear - "How ya feeling?"
There is not a lot of change day to day. I continue to have the Nexavar side effects. Dry, peeling skin, thinning hair, fatigue, stomach issues, and blood pressure issues. The mouth sores seem to have stabilized and am eating a little better but I still have a ways to go - I'm down to a svelte 180 lbs and need to stabilize it there. Unusual for me to have to cram in extra calories! The side pain from the surgery has not changed much, I have 2 weeks until I visit the surgeon again and I am hoping it subsides by that time. Then maybe I can get out of this back brace! The legs and hips continue to be tired and sore, especially after a lot of activity.

Once again - I appreciate you checking up on me. I hope you are having a great summer!

Be Well - Be Blessed

Traveling Time

Just wanted to let you know that I will be out of town Friday through Monday with no computer. This should be interesting - it the first traveling I have done since last fall and the first since this metal was put in my body. We'll see if I set off the scanners at the airport!

Jessica and I are going to Chattanooga to help my friend Tom celebrate his 40Th birthday, he's having a big party and was nice enough to come to my party a few months ago. Hot, Hot, Hot in Chattanooga this weekend.

Thanks for the positive response to the new blog - I'll try to keep improving it!

Be Well - Be Blessed!
Ken

Email Address Reminder

Hi! I realized I did not put my email address in the last post so you can send me commnets or questions about the new blog site. it's kpelt@wi.rr.com

Talk to you soon!

Welcome to my new Blog Home

Hi Friends!
Hey - you found me! I am glad you did. Sorry about having to change the location of my blog but Yahoo decided to change their setup (again!) and I had too many issues anyway. So let's hope Google's blogging tool works better. Let me know how it works for you or if you have problems viewing anything that is posted.

On to the health update. I know it has been a while, I won't insult you by apologizing again, but honestly I planned to post last week but was too sick for much of it.

My back has been healing pretty well, the spine repair itself rarely hurts, only when I am stupid and bend or stretch too far. Remember the "act like a Penguin speech" from the surgeon? He was very right, I need to keep my arms in and locate my rear end close to whatever I want to pick up. The huge side incision is healing as well, although at a snail's pace. If I keep the back brace on (which I have to wear for another month at least) it feels better, I guess the brace keeps everything in place and tight. When I have the brace off (for short periods only!) it feels like everything is hanging loose. A few times a day the side seems to "lock up", the only way I have to describe it is that someone stuck their hand 2 inches inside my skin and started twisting my insides. Ouch! When that happens I lay down for an hour or so and the feeling fades, thank goodness for pain meds! Fortunately this has been happening less and less.

Big News! Great News! My CT scans last month looked "stable" which means there were very few changes or growth in the size and numbers of tumors. As I talked about last time I restarted Nexavar on June 12th at the 1/2 dosage that was planned. I got freaked out when my entire body turned beet red within 6 hours but that was just an initial reaction. Fortunately the sunburn-looking redness faded within a few days. I do have most of the same side effects as last time but at a MUCH lower intensity, plus a few new ones. The ones making a repeat appearance include rash plus dry and peeling skin; Jessie is back to following me around the house with a dustbuster to clean up my skin flakes and hair. Yes that is correct - hair! I never expected to lose my hair but I guess I can't really call myself a cancer patient unless I do. It's not all gone but it is going at a fast rate - every time I look at myself in a mirror I do a double take. It also freaky to run my hands through (actually now over) my hair and feel a very thin, stiff, brittle feeling. I guess I can now make use of that large collection of hats I have!

The other new troublesome side effect is mouth sores. So far they are small but they sure have made eating a painful experience! I have not had much appetite lately anyway but this new condition has made it much worse. I have lost 25 pounds in the last month, which if you add that to my balding head means I really look like a cancer patient now! But seriously it is a real problem trying to get enough calories in. The doc gave me some "magic mouthwash" yesterday which deadens the feeling inside your mouth; I am supposed to use this right before eating in order to deaden the pain and let me eat a little more. I tried it once so far and it seems to work but eating is still not a pleasant experience - we'll see how it goes from here. Even ice cream hurts which is really rude!

At the beginning of August, about 60 days after starting Nexavar, I will go through another round of CT scans to check on the progress. I am really anxious to see if this wonder drug will shrink the size or number of tumors. I am looking at the bright side and thinking that if the drug is having these effects on my outside they must be doing something on the inside. Sounds right, doesn't it?

I am trying to get my old Yahoo posts listed on here but as usual am having a few problems with Yahoo's service. I will work on getting everything updated and easy to use, thanks for your patience.

Be Well - Be Blessed!