Friday, February 26, 2010

What a difference a day makes

Well - after a day of pretty good news on Tuesday, Thursday and Friday have kicked my butt.

I went for my first radiation treatment Thursday, expecting only "minor issues" as that is what I was told at the setup conference. The treatment went fine but less than 2 hours later I was vomiting my breakfast. I honestly did not know if it was from the treatment or if I had picked up a bug but I continued to decline the rest of the day and overnight with extreme nausea and sweats. Friday morning Jess called the nurse for me and they prescribed a funky melt-in-your-mouth nausea medicine. Its a small pill that you lay on your tongue and wait for it to melt. (its always a challenge now to find medication that goes through the G-tube, Pepto isn't going to work!) Jessie was nice enough to run to Walgreens right away to pick it up and it helped immediately, but I continued to feel very weak from 18 hours of nausea and sweats.

Friday I went for treatment #2 and then we spent time talking to the nurse. I wasn't completely dehydrated so they gave me the option of IV fluids but I decided to just try getting back on a regimen at home. Tonight I was able to take some water in, along with my pain meds, and 1 can of "food". That's the first calories I have had since Thursday morning, which I lost most of anyway.

My plan for this weekend is to continue to build up my nourishment and water so that I can start treatments Monday from a position of strength. I'll be down for a while I expect but at least I won't get caught by suprise at the side effects. No driving for a while yet though!

Thanks for all the positive notes regarding my news earlier this week.
As always.....

Be Well - Be Blessed!

Wednesday, February 24, 2010

Lots of Updates for You

All right dear friends - here we go - try to keep up! I told you I had 6 doctor visits Monday, well it turns out the day went so well we added an extra one on for a lucky 7. Most of you know I really like to play craps so I believe the number 7 holds special healing powers for me. There is a lot of detail in this posting so I suggest you take an occasional break when your eyes start glazing over.

First stop - the Trauma/surgery center to have my G-tube checked. ("G-tube" is the medical lingo for the type of feeding tube I have, because it is a Gastric tube as opposed to a Nasal tube which would guessed it - N-tube!) I was having trouble with leakage and small pieces of my "innards" hanging out. It was a simple fix by the Nurse Practitioner and we were on our way in about 20 minutes with instructions for how to maintain it.

Second stop - The Palliative Care Team. These are the people who work on the "soft" side of your disease. They are experts in pain management (remember I asked to see them) and they help with the psychological part of cancer. As far as pain I thought that I was being over medicated but it turns out that in their opinion I was way under medicated. After asking me a couple dozen questions about how I felt, how often I was taking meds, and how long the meds lasted when I took them they increased both my long term (patches) and short term (liquid) pain meds. I was surprised to say the least but you know what? This morning was the first time I got out of bed with minimal pain; it was like a miracle!!! Hallelujah!!! After that discussion I asked about driving and was surprised again. They said they had people taking much heavier doses of medications that were driving with no problems. Their opinion is that if I feel well enough; if I'm not drowsy or "loopy" that I should be able to drive. First off let me tell you that my decision not to drive has been self-imposed because of the articles in the paper about the doctor who rear-ended and killed a woman and her unborn child last year when he was juiced up on unprescribed pain meds. It turns out "unprescribed" is the key word that I did not know about It seems your body adapts to the level of medication in your body. Yes, you can reach a high enough level that you lose coordination and proper thought processes but that level is a lot higher than what I am on. So the bottom line is that they have no problem at all telling me that I am OK to drive with the caveat that every time my meds are increased I wait a week or so to see how the new levels affect me before I hop behind the wheel. Needless to say I AM THRILLED WITH THIS REVELATION! Not that I minded spending quality time in Jessie's vehicle with her but now I will have more independence and I will not have to worry about checking her schedule before booking my appointments. I will also be able to go to the store (Ultimate Truck - not the grocery store) when I feel well enough without having to arrange a ride with Jess or someone else. Look out employees - you may be seeing me a lot more often! The last thing I learned at this visit is that they require you to visit with one of their psychologists as part of their service. They just want to sit down and talk about how you are dealing with the mental aspects of your disease which I think is a great idea. As was evident in my rant a couple weeks ago sometimes this disease gets the better of you and you need to talk to someone. Better to talk to a professional than to someone without training when it comes to dealing with problems like that.

Next stop - the lab. This was an easy stop - just a needle in my arm to suck a couple vials of blood and we were on our way to.......

The Nutritionist. I lost about 5 pounds in the last month which is a no-no until I reach my target weight. I weighed in at 161 lbs, down from 166 last month; my target is about 175 lbs. Through the tube I have been consuming 2100 calories a day which is about 300 less than they want me to "eat". I was hoping that my reduced activity level would make up for that 300 calories but no dice. One can of the supplement I am using now is 350 calories so I need to add 1 can to my diet. Kind of a bummer because I was doing really well feeding myself 3 times a day with 2 cans and now when I add another can it will make me more bloated. I am trying to do 1/2 can at 2 different feeding times to spread it out a little.

On to the serious doctors - the fifth stop was the radiation oncologist to discuss the possibility of zapping some of the tumors in my hips and pelvis. Turns out they have plenty of room to work and so we are proceeding with that immediately. I returned to the hospital today for my setup appointment and will have my first treatment tomorrow already! I like it when things move along efficiently. They are planning on 10 treatments; 1 every weekday for 2 weeks. I am told there should be a minimal amount of side effects from this treatment and the pain relief should come quickly. Hallelujah again!

Stop number 6 - the Oncologist. This was a relatively short visit as well. My oncologist is pretty much the quarterback of my team of doctors, he makes recommendations on what course of treatment we want to pursue next. So I spent some time reviewing with him what happened at the earlier appointments I had that day, all of which seemed to make him happy. Then we talked about getting me back on Sorafenib. (I guess I lost some people when I started calling this drug Sorafenib. It is the same thing as Nexavar; Sorafenib is the generic name, Nexavar is the brand name. Sorry about that! I will try to be consistent from now on.) Anyway the issue with going back on Sorafenib is that it exacerbates bleeding and I am still having bleeding in my throat which we think was caused by the 3 throat dilations I had. So my oncologists assignment is to consult with the GI doctor who did the dilations to find out how to put an end to the bleeding. It may require another exploratory trip down my throat to to get the answer but if it does I want to get it done as soon as possible. I'll be ready to start the drug as soon as my radiation treatments are done in 2 weeks and we (the oncologist and I) are both getting tired of the delays. Sorafenib is the only drug that has given us results in shrinking and/or stabilizing the tumors and I have been off of it since I went in the hospital the week before Thanksgiving. As I told you my PET scan showed lots of new tumor activity so time is of the essence when it comes to getting back on this wonder-drug.

Last stop - lucky number 7 - was at the Day Hospital where they do infusions. While we were there and on a roll we decided to get my monthly Zometa infusion done. Zometa is the drug that adds calcium to my bones in order to strengthen them. It's only a 15 minute IV infusion so when we found out they had an opening we jumped on it.

Seven reasonably productive appointments in one day! (All right - I'll agree with you that the lab appointment is kind of a "gimme") I have to tell you that I think that is some kind of record and also tell you that I was pooped when I got home. I fell asleep in my chair pretty quick.

So I warned you there was a lot of detailed information packed in this posting! I thank you from the bottom of my heart for caring enough to read the whole thing. If you have any questions or comments you know how to get in touch with me. As always - thank you very much for your love and friendship. I appreciate every email, note, card, and prayer you send my way. I will keep you informed of any new happenings

May God Bless you all!

Monday, February 22, 2010

Nervous About Tomorrow

Tomorrow we have a busy busy day at the hospital. I'm looking at my schedule of appointments and I have 6 of them in 4 hours, it's a darn good thing that 5 of them are in the same general area of the campus. Let's hope that nobody is running late and screws up the rest of the day. It will be unusual if everything goes on schedule but all we can do is hope for the best.

I'm not sure why but I am feeling very apprehensive about the day, probably because what I learn tomorrow is going to dictate what happens in my life for the next few months at least. We will be talking about how to treat the multiplying and growing tumors with the use of both radiation and Sorafenib. As you know both of those treatments have undesirable side effects and will beat up my body in a variety of ways. On one hand I am looking forward to doing something to fight the disease but on the other hand I am not looking forward to the way those things will make me feel. And do you want to listen to me whine for the next several months?

Anyway I will listen, learn, ask questions and make a decision on what to do once I have all the information. I am certainly going to do what I can to put a finger in the dike of this disease.

Please wish me luck, say a prayer, and send good vibes. I'll be back to you again later this week. One more request if you would be so kind - please keep Jessica in your prayers; today is the 4th anniversary of her father's death. He died much too young at 75.

Be Well - Be Blessed

Tuesday, February 16, 2010

Test Results

I finally had my swallow study on Friday and I have to say I was pretty disappointed with the results. I did only slightly better than I did on the test I had in November. First I'll explain how the test works. They have you swallow various textures of food with barium attached to it and follow it on a x-ray screen. You start with a thin watery liquid, then move to a pudding-like texture, and finally on to more solid textures. On the video screen they can watch the operation of your throat and make sure everything is functioning the way it should. Unfortunately I never got past the first step of watery liquid. I took about one-half teaspoon of it and swallowed but only a very small portion of it actually went down. The majority of it stayed in some small pockets in my throat. The therapist had me do some things like press on the sides of my throat and turn my head to one side then the other which helped, by doing that I was able to "milk" some more of it down but only a little at a time. The strange thing is I couldn't feel any of this going on while I was swallowing, to me it felt like everything was normal. It was only afterwards when they showed me the video x-ray that I could see it. It was fascinating and disappointing all at the same time.

I also learned that that the throat dilations I went through really did nothing to help with this problem. I definitely would have needed the dilations eventually but the area that they help is further down the pipe than where I am having my problem causing the aspirations. I hope I explain this correctly, as I am not 100% clear on it, but what I understand is that when you swallow there is a muscle that pulls your esophagus forward so it closes off your larynx (windpipe), which prevents food or liquid from going down the wrong pipe. The scar tissue caused by radiation that is in my throat is preventing the esophagus from moving forward and closing off the larynx.

So - what now? Based on what she saw on this study the therapist gave me different exercises to do that should help me swallow a little better. She said it looks like I will never be "normal" but that we should be able to get me to a point where I can eat some things again. I am supposed to report back to her in a few weeks with how I am doing on the exercises and then we will make a plan on where to go from there. Kind of a kick in the pants to end my week!

I also had my PET scan last Wednesday and finally talked to the doctor (my oncologist) about it on Monday. I have not seen the report yet so I don't have the full details but I did learn a few things. First off you know I have been complaining about increasing hip pain. The doc said they definitely see increased tumor activity in the hip joints and he wants me to see a radiation specialist again to see if they think radiation would help ease the pain. They also need to see if it is in an area that was radiated before because then they may not be able to do it again. If this sounds familiar it should - I have been through this same cycle a couple times before.

To help me out in the meantime the doc increased my pain medication AGAIN - I'm starting to feel like a doper. Since I have been hurting so much for so long I asked about seeing a pain specialist and they set up an appointment for me next week. I don't know what these specialists do or if they have non-drug ways of relieving pain but I guess I will learn next week. I figure seeing an expert can't hurt!

We also talked about getting back on the sorafenib again, as the thyroglobulin and TSH levels in my blood are increasing which is bad. He is going to consult with the other docs to see if I can be on the drug simultaneously with the other treatments I am looking at. Hopefully he will have answers for me by our appointment next week.

So looking forward - next week I have a few appointments that will determine the course of action I will be taking over the next few months. Lots of decisions to be made again. Please keep me in your prayers if you are inclined to pray or at least send good vibrations my way!

Be Well - Be Blessed!

Saturday, February 6, 2010

One for Two on appointments

Well the end of the week was not much better than the beginning.
First the good part - the 3rd throat dilatation went well on Thursday.
The only funky part of the procedure is that they didn't give me quite
enough anesthetic and I was more awake than asleep through the
procedure. That was quite interesting! I tried communicating this
fact to them but I had a big fixture in my mouth and couldn't do much
more than moan. I didn't feel any pain but really would have preferred
to be more unconcious. I talked to the nurse afterward and she said
when a patient is on as much pain medication as I am they have to
guess at how much "medicine" (they don't call it anesthesia) to give
them. If they give too much then the patient forgets to breathe, which
of course is a bad thing. Anyway, it wasn't a terrible thing for me,
just a suprise! So now my throat has been stretched to a full
12mm. I have to schedule that swallow study next - let's hope for good
results there!

Friday I was scheduled for my PET scan. I was feeling pretty rotten
when I woke up Friday, on top of the usual pain I had some severe
stomach issues. I decided to go anyway, as I really wanted to get
this done. We got to the hospital, I had some blood drawn in the lab
and we headed down to the radiology area, making a couple restroom
stops on the way. After talking to the technician about the procedure
I found out they really need me to sit and lay quietly for 1.5 - 2
hours. Since I had to use the restroom again while she was explaining
all this I decided that there was no way I could do it at that time.
If I can't lay still then they can't get a good scan and that would
just waste everybody's time. Plus I don't want to have to try to get
approval from the insurance company for a rescan! Kind of a bummer
since we made the effort to be there but I also want it done right.
So we rescheduled for next week, and headed home. I climbed into bed
(after using the bathroom again) and slept for a couple hours. Then I
got up and moved to my chair in the living room where I slept another
couple hours. Quite a non-productive day! I do feel better today

I found out I have one more person to apologize to for missing the
blessing of the throats on Wednesday. Jessie's good friend Annie also
made the effort to join me and found me absent. Sorry Annie!

Super Sunday tomorrow! We are going to enjoy it at home with Pete,
brother Jerry and his wife Terry coming over. Unfortunately I will
not be able to enjoy Terry's chicken chili or any of the other goodies
during the game! Being a sentimental sap I am pulling for New Orleans
in this one. Hu Dat nation deserves a super bowl win after 40 years of
mediocrity. I think back to the Packers of my youth and realize we
"only" had 20 years of pain before Ron Wolf came to our rescue. Can
you imagine going through that for 40 years? Ouch!
Most importantly we should hope for a good game, no blowouts like too
many of these games have been. Whatever you are doing enjoy your
Super Sunday, be smart and safe if you are driving.

Talk to you again next week.
Be Well - Be Blessed!

Wednesday, February 3, 2010

Tough week so far

So far this week has not gone as well as I would have liked.

First off - pain. I know I ranted about this and I promise not to be a
constant whiner but this week has been bad. Mornings have always been
hell on my hips lately and this week instead of just a few hours in
the morning it's been bad all day. Hard to sit, stand, walk, even
think, which I will verify with this example. I ended the last post by
inviting you to come join me and have your throat blessed tonight. Any
guesses who forgot about it? Yep - yours truly! I got reminded when
I received a phone call saying "guess where I am and you're not" from
my office manager who had brought her whole family to support me. Such
a dolt I am some days! I hope that no more of you showed up. If you
did I am truly sorry. And once more to Mary Beth and her family I
sincerely apologize.

Next issue - I started the Nexavar on Monday morning. Quite
interestingly within 8 hours my thighs had turned a bright red in the
areas that I had radiation. That's not long for a side effect to
happen. More importantly the next morning I started coughing up blood
again. Since the throat dilatations started I've been coughing up a
lot of thick phlegm which they told me is normal but Tuesday morning
it was mixed with a lot of blood. Then I had an "Ahah!" moment. The
people at the GI lab, who do my throat work always ask if I have taken
anything that thins my blood, even as gentle as ibuprofen. Well what
do you think Nexavar does? So after a couple phone calls and the
doctors consulting with each other it was decided I should hold off a
little longer on the Nexavar until my throat dilations are done. I
still have a little blood so I'm just hoping that it does not delay
round 3 of throat work tomorrow. I guess this incident is one of the
risks when you're going through multiple health events at the same
time. I always ask questions when I think something may be an issue
but even though I know Nexavar is a blood thinner it never even dawned
on me to question restarting it.

So anyway tonight I will say a prayer that the end of the week goes a
little better than the beginning has. I'm hoping the PET scan on
Friday shows some reason for the hip pain and the cause can be
addressed. I won't get those results until next week but I will let
you know what I learn.

Until then
Be Well - Be Blessed!