Sunday, January 31, 2010

This One is Not a Rant

OK - I've had my rant and feel a little better. Now it's time to fill
you in on what's happening medically in the last week.

First off the insurance company finally approved my PET scan but too
late to keep my appointment for last week. So it has been rescheduled
for this Friday.

I did have my second esophogeal dilation (throat stretch) on Thursday.
This one was done from the top instead of having to go up through my G
tube. Just like last time it went smooth and was successful. Minimal
issues afterwards other than a little bleeding a a sore throat. I
don't know what the sizes mean but the doc said he was able to go from
a size 9 to a size 11 dilator. I interpret that to mean he was able to
expand the opening 20%, which sounds pretty good to me. Still no food
or drink or meds via mouth though. I am scheduled for the 3rd
procedure this Thursday and the doc said that after that one we will
schedule a swallow study to see what good we have done. Just like any
muscle if you don't use your swallowing muscles they "forget" how to
work and have to be developed again. So that will be the next step in
the process, although the study and the therapy are with a different
department and doc.

I've been given the go ahead to start the Nexavar again. To refresh
your memory, this is the drug that inhibits the growth of my tumors. I
have been off of it since going into the hospital in November. I
sometimes refer to it as cheemo because people understand that term.
But it is technically referred to as a targeted therapy because it
targets a specific growth pathway within the tumor cells. It is in a
new class of drugs called Tyrosine Kinase Inhibitors (TKI's). Unlike
traditional cheemo it is not administered by IV in a hospital but
rather in pill form. (Another couple pills to go through the tube). I
decided to start it Monday, mainly because it is Feb 1st and that is
an easy date to remember when someone asks me. Let's say a prayer or 2
for minimal side effects this time.

Speaking of prayers - this Wednesday, Feb 3rd, is the feast of Saint
Blaise. Saint Blaise is the patron saint of illnesses of the throat,
supposedly because as a bishop he helped a young boy who was dying
because of a fishbone stuck in his throat. The catholic church
celebrates his day by having the traditional Blessing of the Throats.
2 candles are blessed, then held against your neck in a V shape by the
priest while a prayer is said asking for prevention of illness to the
throat. Obviously I wIll take all the help I can get so I plan to get
my throat blessed. If you want to join me come to Queen of Apostles
church at 7pm on this Wednesday. There will be a short prayer service
followed by the blessings.

So that's the plan for this week. Bless the throat, stretch the
throat, then scan the throat along with everything else.

I'm hoping for a good report from Puxatawney Phil on Tuesday, we could
use an early spring!

Until next time.....
Be Well - Be Blessed

I'm tired

I have rarely used this forum for whining or complaining but today is
different cuz I'm tired of a lot of things all at once. Feel free to
skip this rant if you like - there is no medical news of any kind.

I'm really tired of the pain. I'm tired of waking up several times a
night because my hips or back or legs ache. I'm tired of having to get
up and take more pain medication so I can get back to sleep. I'm
tired of hurting so bad in the morning that all I want to do is take
more meds and sit like a cripple. And then when I stand up I'm tired
of wondering if my legs are going to support me.

I'm tired of this flippin' feeding tube! I'm tired of taking all my
nutrition through a hole in my belly. I'm tired of having to crush
pills and flush them through the tube instead of just popping them in
my mouth. Try screwing around with that at 3 in the morning and you'll
know what I mean. Are you thirsty Ken? Here, have some water.
Wrong! All of that goes through the tube also.

I'm really tired of not having a social life since 90% of what we do
somehow involves food. "Want to come over for dinner?" "Want to grab a
burger for lunch?" "Want to stop for a scoop of frozen custard? Oops
forgot you can't!" I'm tired of watching my wife eat frozen microwave
dinners because it's not worth the effort to cook for one, or because
she doesn't want to make any of my favorite dishes. Although I'm sure
some days she appreciates not cooking.

I'm tired of not working. I'm especially tired of getting knocked back
every time I try to do a work project at home. It seems every time I
start something I have another medical issue or I go through a bad
pain period. I hear many people say they would love to not be working
but what I am doing is not exactly a day at the beach! My self worth
has been intricately wrapped in my company for 20 years. Watching the
company struggle along during the most challenging economic times and
having to sit on the sidelines is a feeling I can't quite get over. I
have a great partner and crew and I know I'm no miracle worker but I
also know my contributions would have a positive effect. No one knows
"my baby" like I do! Everyone else is working for the weekend and I
sit here wondering what day of the week it is.

I'm tired of doctors and nurses and pharmacists and appointments and
medical reports and all the other crap associated with hospitals. I
have no fear or phobia about any of that stuff but I never expected my
life to revolve around them. When's my next scan? What are my TSH and
TG levels? Why did they go up since the last test? How big are the
tumors in my spine? Any new ones? Have the old ones in my hips
grown? What follow up do I need for the brain tumors I had zapped
last year? How many more times do I have to have my throat
stretched? I feel like I should have gone to medical school instead
of dropping out and being a life-long gearhead.

I'm REALLY tired of not being able to drive. Most days I actually feel
like I could but then I read another story in the paper about someone
getting killed by a driver whose system is full of prescription
painkillers. Since I'm on 3 different ones that's enough to scare me
back into the passenger seat. I couldn't live with myself if I hurt
someone else because I was being obstinant.

I'm tired of people who have no business doing so asking me personal
questions about my situation. And then when I give them a half-hearted
answer they insist on telling me about their Aunt Thelma who had
surgery "just like yours" to remove a wart from her ass. Gee Thanks,
I feel better knowing I am not the only one suffering. Don't
misunderstand - I certainly appreciate the concern any of you show and
will gladly answer your questions or try to help out your friends or
family members if they are in a similar situation. What I am
complaining about is the people next to me in the checkout line who
notice a scar or see me using my walker and think that is an open
invitation to dig into my medical history. Ignorance is bliss I guess.

I'm tired of reading the on line forums dedicated to thyroid cancer
and reading story after story of people like me who were diagnosed and
then severely mistreated or undertreated because "Thyroid cancer is
the good cancer to have". Nothing like hearing your doctor tell you he
knows how to treat you only to find out later that you should have
sought out a specialist or 2. That would be like me telling someone I
can fix the space shuttle because I can tune up a Chevy. Stupid
arrogance is all it is! Then years later when the cancer magically
reappears the doctor is stunned. "You must be one of the few with an
especially difficult case". No doctor, you were over your head and
didn't know it. And now it is 10 times harder to treat. When will
the medical community realize that even though Thyroid cancer is
treatable IT IS STILL CANCER! Let the folks who have studied it and
are trained to treat it do so. That is why I am so hyped up about
ThyCa and the good they do. Not only issuing grants to study this
disease but also creating ways of getting information out to the
patients and doctors. As patients we shouldn't have to read online
how to properly treat this disease but I learned things I should have
done 15 years too late. Wake up people!

If you made it this far I thank you for bearing with me. I've been
writing this blog for 2-1/2 years and have had a lot of things
building up. I'll try not to make this type of thing a habit.
As always.......
Be Well - Be Blessed!

Wednesday, January 27, 2010

One procedure up - One shot down

Hi Everyone,
Well - let's get you an update on what's happening in the exciting world of Ken's health. I had my monthly follow up with the oncologist last week. Not much to report as he was happy with the way things have been going. We talked about getting back on the Nexavar ASAP but he wanted to get a good scan before I went back on it. So he set up a PET scan for me which was to happen tomorrow except there is a snag because my insurance company has it under "medical review" and has not authorized it yet. This company seems to have a problem with PET's because I ran into this same problem the last time I had one, which was over 2 years ago in Chicago. I'm not sure why the doc wanted a PET instead of the CT scans that I normally get but maybe it is because I complained a lot about the pain in my hips. In case you are not familiar with a PET scan it is basically a step up from a CT scan. It shows not only the tumors but also shows the activity of those tumors. You are injected with a radioactive isotope, then sit for about an hour while the injection works through your system. After that the procedure you are scanned in a machine very much like a CT scanner except the isotope shows activity because it is attracted to sugar. Tumors use a lot of sugar so this is a good marker to shop where there are active tumors. If you understand it after that explanation you are smarter than me!

Also scheduled for tomorrow is my next esophageal dilation (throat stretch). That has not been cancelled and I am looking forward to getting that done. Since the first one I have had very few problems so I will be sure to ask about their estimate on when I can start eating or drinking again. The only issue I have had is it seems I am coughing up more "thick gunk" than normal and occasionally it is bloody or has blood streaks in it. I was told that this is normal as long as it does not become excessive. I'm REALLY REALLY getting tired of looking at all the good food around me and having to pass it by. Jessica and I have gone to a few movies in the past few weeks and I miss the popcorn. I know it's bad for me but SO WHAT. Anyway - I'll try to keep the whining to a minimum. I look forward to seeing more progress on my strictured throat tomorrow - little by little we will get there.

I'll catch you up after this procedure. Keep moving forward!

Be Well - Be Blessed!

Monday, January 18, 2010

The Stricture Gets Stretched

As usual I am later than promised but I want to let you know about the throat stretching procedure I had last Friday.

It appears it was a success, at least for a start. First I have to explain a little about what they did because I was mistaken when I explained it in my last posting. Normally the procedure is done the way I described it, from the top through the mouth. But because my throat was so narrow they couldn't do that, so they removed my feeding tube and ran a wire up through the tube opening in my stomach and out my mouth. Then they used wire-guided dilators (see the picture) to go back down from the top and stretch the opening.

What they do is use a series of incrementally larger dilators to gradually open the stricture. They can't stretch it too far all at once so they did as much as they could in one procedure. I am scheduled to go back in about 2 weeks for another round to stretch it even further. At this point we are not sure how many of these procedures it will take but as long as we make progress with each session we'll keep going.

The good news is the doc thinks he stretched it enough so that the next procedure can all be done through my mouth, they won't have to go through the feeding tube opening. That should make the procedure quicker and easier.

I had no bad symptoms after everything was done, just a slightly sore throat on Saturday. I also was very loopy from the anesthesia they used; my memory of anything I did Friday evening is spotty at best. Kind of frightening to hear about things I did or said that I had no recollection of the next day - it brought back scary memories of drinking too much as a youngster! I do not like that feeling.

Today (Monday) was a much better day! My friend Chris and I spent a some time at the EAA (Experimental Aircraft Association) museum in Oshkosh. Chris had off for MLK day so we thought it would be a good opportunity to go gawk at airplanes for a while. The museum is a fascinating place where someone like me could easily spend a couple days so the few hours I had today was definitely not enough to satisfy me. But my hips would not take any more walking and I didn't want to view things from a wheelchair. I'll have to plan another trip in the near future. Good thing admission is free to us EAA members!

Tomorrow is another follow-up appointment with my oncologist. Since my last appointment I have put on a few pounds and am feeling much better and stronger than when I went into the hospital. I expect that he will want me to restart the Nexavar. I'm not looking forward to the side effects that will come from restarting it but they are a small price to pay in order to have something fighting the cancer cells in my body. I'll report back after the appointment.

In the meantime - Be Well and Be Blessed!


Thursday, January 14, 2010

Could I lose the Tube?

Hi Y'all,
I'm pretty excited today, actually have been all week. Monday I got a call from one of the docs who had worked on me while I was in the hospital back in November. He is a GI specialist who tried to install my feeding tube but was unable to do it the conventional way because he was unable to get an endoscope down my throat. As I have told you before I have a lot of scarring in my throat and the opening to my esophagus has narrowed significantly. In medical-speak this narrowing is called a stricture. This stricture is the reason I cannot swallow properly.

So anyway this doctor calls me out of the blue, I had not heard from him since before he attempted the feeding tube. For him to remember me and call me when we met only briefly I thought was amazing! He asked if I would be interested in trying a procedure that would stretch the opening to my esophagus and therefore help with my swallowing. They insert a device like a balloon in my throat and inflate it so that it expands the opening. Pretty cool, eh? So I checked out the procedure a little on the Internet and decided to go for it. He did say that it would most likely take more than one attempt in order to get it stretched out far enough. I have an appointment for the first attempt tomorrow (Friday) afternoon. They use conscious sedation (or what they call twilight sleep) so I am able to come home tomorrow night right away, assuming things go as planned.

I'm REALLY excited about this because anything that can get me off the feeding tube and eating actual food would be very welcome. I'm sure if it works I would still have to gradually work my way back into eating solid food but it would be progress in the right direction.

Wish me luck - I'll report back sometime over the weekend to let you know how it went.

Be Well - Be Blessed