Wednesday, November 3, 2010
Here we are, another month or so gone by since my last posting and I have a couple new things to report. First off elections are done - Whether your side won or lost it's a definite "Yay" just from the point of no more robo calls all day long. Maybe you don't get them when you work all day but if you are home sick it seemed like they were coming in constantly.
On the health side of things I am now feeding myself with a pump. Instead of a drip feed where we rely on gravity and guesstimates to determine the amount of food I am getting the pump can be programmed to give me a precise number of cc's of food over a certain amount of time. The advantage to this is that I am no longer guessing at how much or how fast I am eating, I can be more precise in my food intake. I should have gone to this long ago but stubborn old me didn't think it was neccessary but I was wrong - what a difference! Now I know exactly how much food I have eaten and can control how much more I want to to eat. Unfortunately the insurance company does not pay for the pump rental (which is highly stupid!) but so far I have found it worth every penny we pay out. Now it is a matter of me establishing some baselines and then building up from there. Less guesswork - I like that! With any luck in a month or so I should be reporting higher caloric intakes and still less illness. That's the plan anyway!
So I'm keeping today's update short and sweet. Please issue prayers for hopes that the pump helps me to find my way forward when it comes to my eating expostion. You have all been a tremendous help to me and i hate to keep asking for more help but isn't that what friends are for?
Thank you from the bottom of my heart and blessings to all of you.
BE WELL - BE BLESSED
Tuesday, October 12, 2010
Yes, it certainly has been a long time since you heard from me. I won't offer any apologies, just suffice it to say it has been a rough couple months. The last time we talked I told you I was still struggling with the nausea issue. Well guess what? I still am. If my hair wasn't thinning horribly already I'd be ripping it out in frustration. I have been kind of a cranky guy lately and not a lot of fun to be around.
I want to say thanks for the notes, cards, calls, and other contacts that you guys have sent over the past couple months. It's nice to know that even when I have been out of touch you are still thinking of me and praying for me. So a giant THANK YOU is well deserved.
Over the last several weeks I have tried different foods, different ways of "eating", and different medications to make myself more comfortable but unfortunately have not hit upon the magic potion that helps me tolerate the feedings easily. I wish I could tell you here that I have had some big breakthrough but the truth is we are still floundering. I did meet with the docs again today and there are more tricks up their sleeves yet. It's too soon to tell any details of what we plan to try but suffice it to say we haven't given up. This has been one long, winding, frustrating road we have been on. We've been dealing with this since Spring! Occasionally we find a drug that helps with the nausea but then proves to have other non-desirable side effects like sleep issues or making my formerly sharp brain foggy. So we keep trying and we will continue to do so. I appreciate all the support you guys send my way!
On the non-medical side of life I don't have a lot to report on either. I've been keeping a low profile since I never know when I'll get sick after eating. If I do get sick it usually washes me out for the rest of the day which makes for a lousy day. One big thing is that Jessica and I cancelled our trip to the ThyCa Conference in Dallas this weekend. I just am in no condition to tolerate 2 days of travel and 3 days of seminars, meetings, and dinners. It was a hard decision as we have made some great friends the last couple years at this event but there is no point in being sick 1200 miles from home when you can be sick in your own bed. The good part is we didn't lose any money on the cancellations, just some airline points which I am overstocked on right now anyway.
So in summary I just want to again say thank you for the support you give to Jessica and I. I will attempt to post more frequently, especially if we can find some good news in this latest pile of changes we are going to attempt. God Bless you all
Be Well - Be Blessed!
Sunday, August 15, 2010
It's been a busy week - I spent time away from home and away from the doctor's office, hard to believe I know. It started Tuesday with a day at work. Actually only about 4 hours spent at the store helping out with a project but it seemed like a full day.
Now on to the reason for the title to this blog posting - Jessie and I had a great invitation this week from our friends Jerry and Anna. Jerry offered to push my formerly-fat-rear-end around the State Fair in a wheelchair for a day. What a tremendous offer! So Friday we met them in the handicap parking area and got to tour some of the fair. Unfortunately the weather wasn't the most cooperative-it was in the 90's with similar humidity so we spent a large chunk of time in the air conditioned buildings studying the ginsu knives and cookware offered by eager vendors. No sales here though! So a special thank you to Jerry & Anna - I never would have gone to the fair without you!
Another exciting event this week was Jessie's family reunion on Saturday. The maternal side of her family does an a good job holding an annual reunion in Waupaca. However I admit even after 30 odd years of attending this event I forget more names than I retain. And how many more kids get added every year? It's just too much to keep track of. Anyway, we enjoyed catching up with the people I do remember and talk to more than once a year. It was relaxing because we drove up Saturday (another stinky hot & humid day), stayed overnight, and drove back today.
As far as the health update portion of this blog post it's been so-so. Definitely still better than last month but I've been struggling with a few episodes of nausea again. I still don't have a handle on why it happens or what triggers it but I've started keeping notes on what I feed myself, the amount, and the speed. I'm hoping to discern some pattern soon.
Thanks for checking n on me again - I really appreciate your support. Thank you for the prayers and love sent my way.
Be Well - Be Blessed!
Tuesday, August 3, 2010
I finally have some good news to report! I bet you were getting really tired of listening to me whine all the time, but I now can tell you that my stomach feels MUCH better than it has in at least a month. So what happened? I'll tell you that it took a logical approach by me that finally got us on the right track. I told you last time that I had several appointments last week and hoped for better results. At the first appointment I could tell no one had any new ideas so I said "How about we go back to the medicine routine I was on before all this started?". They said that was not a good idea because I had such severe hip pain before the changes were made. I said you are right but we made several changes at once and we have been guessing which one or which combination is causing the stomach issues. Let's go back and make changes one at a time and see what happens. I'm willing to risk pain for a while as long as I know it's only for the short term. They looked at me like I was some kind of idiot but I got everyone to agree. And guess what? It worked great! I am back on the patches (and only half as many as before) for long term relief and liquid oxycodone for relief from breakthrough pain and I couldn't be happier with the results. Very little hip pain and a much more contented stomach. Sometimes you have to look past the experts and apply a little logic in order to get where you want to be!
Another thing that helps is I've changed the way I feed myself. Instead of manually pouring my formula into my feeding tube I am using a drip bag. It's kind of like an IV setup where I put the formula in the bag, hang it up, and then let it drip into my tube. Doing it this way means I can control the speed much easier. Feeding slower means less issues as well. Plus there is the added benefit of having my hands free so I can work on the computer or read while I "eat". It works great!
So it has been over a week since I made these changes. They said it would take a full week for all the old meds to be flushed out of my system and that would be the real test if the new protocol is working. Well it definitely is! I plan to continue this until something changes that forces me to change. But so far so good!
I am still on the Nexavar, that has been about 6 weeks now. At the end of this month I will have scans and lab tests to see if the drug is having any effect on my tumors. I am speculating that the Nexavar may be helping to reduce the pain by shrinking my hip tumors. It's only a guess but we will find out in about a month. Anybody want to make a wager on it?
So I'm glad you got to read some good news for a change. It's much easier to write these posts when I'm not feeling like death warmed over so here's hoping more posts like this one are on the way.
Be Well - Be Blessed!
Friday, July 23, 2010
The last couple of weeks have been a whirlwind of new meds, new feeding procedures, and new schedules. But for everything we've tried it seems my stomach feels the same. The same nausea, the same constipation, the same bloating and gas. Ok - that's probably more info than you wanted but it's what has been making my life hell lately. I know everyone goes through periods of stomach issues, whether from something we ate or from a bug or virus of some sort. But this seems never ending and I'm getting really sick of being sick. I've been to the doc a few times and have tried many new things but so far no help. I guess the only thing to do is keep trying to tweak medicines and food to see if I can hit upon something that works. Next week I meet with several docs for my monthly checkups so I may have more news after that.
Thanks for checking in on me, not much to report these days.
Be Well - Be Blessed!
Wednesday, July 7, 2010
When is it time to tell you all about progress reports? That too, has been harder lately because they all are negative. Had my PET scan a couple weeks ago I was severely taken aback by the tumor growth they reported. The lungs looked good but the bones not good at all. Many new lesions and substantial growth of the existing ones. Reading the report was sobering and scary for me so passing it on is sobering as well. I hope you can understand that.
When is it time to restart the Nexavar? NOW! Actually 10 days ago. The good news is that I have been on Nexavar for 10 days now and have no serious side effects. Some nausea, hiccups, (drive ya nuts hiccups!), and fatigue but so far no bad skin or stomach problems. Hooray for the good news!
When is it time to make changes to my medications? Because of the steady increases in pain I knew I was in trouble. Lately my left hip is excruciating. I have very few positions I can sit, stand, or lie in without having at least some pain and most of the time I'm in the upper eschelon of the pain scale. If you have been to an ER you have been asked to name the level of your pain on a 1-10 scale. I would say my hip fluctuated from a 7 to a 9. (Think of a 10 as being the same as slamming your hand in a car door) Now that is about as serious constant pain as I've ever had! I described it as hell. OWWWWWW! Obviously I needed to do something immediately about the hip. So what do we do? Load me up with a half- dozen patches. These little babies are a transdermal product, in other words they stick to your skin and constantly transmit pain medicine through the surface of the patch. No good, at least not good enough here. The docs inform me we have reached a point with the patches where we are not doing any good adding more. Evidently there is a breaking point and we have hit it. (Forgot to tell you I've been on these for several month and slowly increasing the amount)
When is it time to try new methods? NOW! I have already tried a short course of steroids which helped tremendously, the hip pain was almost gone completely. BUT (there's always a damn "but", isn't there?) there is a good chance that the steroids will reduce the effectiveness of the Nexavar. I guess you can't have your cake and eat it too, or maybe I should say you can't have your steroids and a cure for cancer too. There is no way that I want to reduce the effectiveness of any of my medications. So now we are working on different plans. The first one is to try some different pain relievers, we may find one that is effective enough to block the pain but not the effectiveness of the Nexavar. I'm in the middle of a medication switch right now that hopefully will help, I will let you know. I also am going for a full assessment by the orthopaedic surgeon who did my back surgery last year. He wants to try to pinpoint where the hip problem is and then maybe he can help from there. Originally he talked of doing a MRI but there is no way I can lay in that tube for more than a couple minutes. Let's pray for good results from the assessment.
When is it time to end this posting? You alreay know - now. There it is, many, many days of trials and tribulations broken down into a a few short paragraphs. Some of you may ask "if you have many more days to write about why don't you do it?" The answer is simple - This is a stressful thing to go through. Jessica and I live this as our life each and every day, 24 hours a day. I love and very much appreciate the fact that you are concerned with how I am doing and for that reason I do these updates. But,like everyone, we do like a little time to ourselves and I think I owe it to my wife and myself to spend at least some time in a disease-free zone. So that is where I am leaving this tonight - disease free!
As always my friends, be kind to your friends and neighbors, be loving to your family and pets but most of all
Be Well & Be Blessed!
Tuesday, June 15, 2010
Happy tax estimate day! All the self-employed people just groaned.
This will be quick - I just want to give you an update on what's happening. I finished my radiation 2 weeks ago and had no detrimental side effects other a little shortness of breath. I definitely think I have maxed out the radiation on my lungs but of course new stuff always happens.
Tomorrow I have a PET scan which will be the baseline scan before I restart Nexavar. I will meet with my oncologist next week to review the results and hopefully then I will get the go ahead for the pills. Finally after 7 months I can see light at the end of the tunnel!
How are you feeling? That's the question I get the most and of course it's the most logical of questions for a guy who is sick all the time, right? So I'll answer it for you all here in one place. I know I usually tell people "pretty good" or "not bad" but the honest truth is pretty darn lousy lately. It's a combination of things that I can't seem to control - lots of stomach issues, fatigue, hip and back pain, sweats, chills, yadda yadda. The frustrating part is that I never know how I am going to feel until I get up that day. That makes it hard to plan on doing anything, especially since I've had many more down days than up days. So all in all the the last few weeks have not been much fun (I guess I should say less fun than usual since fun is generally in short supply lately) and I'm really hoping that I can find the right combination of meds that will keep me feeling more consistent. Starting Nexavar will complicate things further but a man's got to do what a man's got to do! Sorry if I sound a little whiney here but the truth is the truth and Mom & Dad taught us that it's a sin to lie.
That is all for this update - short & sweet. I'll be back to you with more news as soon as I have anything to share. I'm really hoping I can share something positive with you next time.
As always - thanks for checking in on me. Luv to you all!
Be well - Be Blessed!
Sunday, May 23, 2010
So let me bring you up to date on all that has happened since last post. I was in the hospital when I wrote you, in the middle of brachytherapy. The following morning, which was a Friday, I had my 3rd and final treatment. The treatments themselves were very quick, only a few minutes. I was hooked up to a machine which fed a wire through the plastic catheter (remember - the one hanging out of my nose) until it was in the precise location of the tumor. Then radiation was applied through the wire while it moved a few millimeters at a time. Once done, the machine pulled the wire back out of the catheter. Kind of spooky having a machine with no one operating it shoving a wire in and out of my nose but the treatments all went well. After the last one the doc removed the catheter by grabbing hold and pulling it out. A couple seconds of discomfort but much easier than the surgery required to install it.
But the real bomb was dropped on me after the catheter was out; that's when the doc informed me that he now wanted to do a course of standard external radiation. Wait a minute here! Didn't we do the brachytherapy because I have already received the maximum amount of external radiation to this area? That is when I got an extended explanation (in halting English with a heavy Chinese accent) about how I have an area of tumor in the same bronchial tube that was hidden by the original tumor on the scans and he just discovered it by using a camera through the bronchoscope during the installation of my catheter. He said he had a small window to work with through which he could give me external radiation. Great! Now I have another procedure that will put my starting Nexavar back an additional month. After answering a few more of my questions he handed me a slip of paper with my first appointment on it, scheduled for 2 weeks later. I said thanks but I really need to think about this a little. But then something really good happened on that Friday - I was out of the hospital well before 10am! A minor miracle happened!
Since the brachytherapy I have coughed up zero blood which tells me that this was the right thing to do. Finally - I was past this hurdle. I had an appointment with my oncologist last week. I have probably explained this before but my oncologist is really the quarterback of my treatments, he directs what needs to be done and I rely on him to answer my questions and help me make decisions about my care. So we spent considerable time talking about whether or not to go ahead with this radiation. I hate it when they say "the decision is yours" but that is ultimately what he said. My point is that we have been trying for months to get me back on Nexavar and we were finally at a point where it made some sense to do that because the drug should shrink the tumor just like radiation should. He said that was a valid point and he would not argue if that is what I decided BUT that my tumors have shown to be very radio-responsive (that means that radiation works very well on them) and that the more conservative approach would be to do the radiation first because it would have a more permanent effect than Nexavar would. So I reluctantly decided on doing the radiation first. The good news is that I will only need 8 treatments, the bad news is that I need to wait at least 2 weeks after the last treatment before starting my drug therapy. I had my first treatment last Thursday and will have my last one June 1st, so that means I am looking at about mid-June for starting Nexavar, almost 7 months after stopping it last November. Let's keep our fingers crossed that nothing else pops up between now and then!
Had enough of all this medical talk? Me too - let's move on to the fun stuff I've been doing. Actually not a whole lot. But I did get to go to the Milwaukee Public Museum to see their display on the Dead Sea Scrolls, a very interesting exhibit! These are ancient scrolls, dating from about 100 BC to 100 AD, that were discovered in caves near the Dead Sea about 1947. Most of these scrolls had deteriorated to fragments so translating and interpreting them has been a major project. The best way I have of describing these scrolls is they were a precursor to the Bible, describing the events of that time period as well as earlier times. If you have an interest in this portion of history and have opportunity to see this exhibit, I would recommend it. The Milwaukee display closes June 6th so move fast if you want to see it here!
Side note - even our calendar has become politically correct. BC has now become BCE and AD becomes CE. So instead of "Before Christ" we have "Before the Common Era" and instead of "Anno Domini" (the year of Our Lord) we have the "Common Era". So even though we all follow a calendar designed by a Christian (Pope Gregory) we now have to remove any reference to religion from these designations. Sometimes I really hate people! I don't know which people I'm hating now - but I'm sure I can track them down.
So now that I have raised my blood pressure I better cut this posting off. Thanks for staying with me - I'll be back to you sooner next time. I promise!
Be Well - Be Blessed!
Thursday, May 6, 2010
Today was brachytherapy part 1 and things went pretty much as planned. I was in surgery by 7:30 where they got the catheter placed, I had 2 treatments today and now am waiting for my 3rd and final treatment tomorrow morning.
As I sit in bed right now I have about two feet of plastic tube hanging out of my nose which they have wrapped around my face and taped down. I am quite a sight to behold! If I was still single I'm sure the ladies would be lining up to meet me. Yeah ...... sure. More important than how I look is how I feel, which is best described as uncomfortable. This thing hanging out of my nose is stiff and pulls which makes it a little painful. But I only have to live with it overnight so I can deal with it.
I'm being fed right now. I kind of like the setup here, it's similar to an IV pump where they hang a container of food, run the line through the pump and attach it to my feeding tube. Then I just wait for it to pump in the required amount, I don't have to hold on to anything so I have both hands free to type out this blog entry for you! Pretty handy but I don't think I will buy a pump for home. They are slower than just using good old gravity but here in the hospital I don't have to rush to get anything done.
The plan is for me to get my final treatment tomorrow at 8:00 am and then hopefully be released quickly so I can head home. Thanks for checking in on me - I'll be back in touch as soon as I can.
Be Well - Be Blessed!
Wednesday, May 5, 2010
I concluded my last post 2 weeks ago by telling you I thought the next 2 weeks would be uneventful and I was pretty much correct. My birthday was in there on the 30th of April so there was a little bit of excitement for the weekend. No cake for me but I got a candle in a cupcake with ice cream that I watched my wife eat! No, she wasn't torturing me, she was just making sure that I didn't miss out on the traditional birthday songs. I say songs because in our house we have the birthday song that everyone knows plus we enjoy the McManus birthday song that my sister-in-law Terry brought to us when she married my brother Jerry. Some no-fun people hear it and say "oh, that's awful" so I will not share the lyrics here but you can email me privately and I will send them to you. It's much more fun than the other one - start a new tradition in your home! Anyway I had visitors every day over the weekend, our good friends and former neighbors from North Prairie Chris & Lori stopped with their daughter Caitlyn on Friday night, (congratulations on the new job Chris!), brother Jerry came over Saturday night while our wives went art crawling (we had the better deal - we watched Tora, Tora, Tora!) and finally Pete came over Sunday night. So I got to extend my birthday over 3 days! Thanks to all of you who remembered me! I had a couple requests to throw another party like last year but sorry, that was a once in a lifetime event. If you missed it I feel sorry for you, just ask anyone who was there.
The only other excitement for me during the last 2 weeks was a few trips to the hospital. I have been dealing with a lot of stomach pain & digestion issues and have been working with the doc and nurses trying to get that straightened out. I'm sure no one wants to hear the details of my bathroom issues so I'll just say it is a process and we are working through it. I did get a new g-tube (feeding tube) installed last week, as I learned it is supposed to be replaced every 3 months. Mine had been in over 4 but I always take good care to keep it clean so no harm done, but I set an appointment for 3 months to get it changed again so I don't forget. My shingles have been clearing up nicely, they are almost all gone. As I said before, they never really bothered me in terms of pain like a lot people suffer from. But I am glad they are gone so I can move on with my other treatments.
Which brings us to tomorrow. I have to be at the hospital at the ungodly hour of 5:30 am to start on my brachytherapy. The full description of what I am getting is High Dose Rate Endobronchial Brachytherapy. Instead of me trying to describe how it works you can click here and get a much better description than I could give of how the process works. The only additional part for me is they will first do a bronchoscopy to provide a path for the catheter. I will be getting 2 treatments on Thursday and 1 more on Friday morning, so hopefully I'll be released by mid-day Friday. I'll try to get an update posted as soon as possible but I am not sure when that will be. I don't know how active I can be in between treatments, but I'll get something up by the weekend anyway.
One last thought - don't forget that this Sunday is Mother's Day! All you sons and daughters work hard to make Mom's day special for her! She deserves it! And as my Mom told me when I was younger - "Remember, I brought you into this world, I can take you out!" I think she was just kidding. I think......
Be Well - Be Blessed!
Wednesday, April 21, 2010
Lots going on in Ken's life the last week so let's get started with the personal, FUN side first. My good buddy Tom visited last Thursday through Saturday. I met Tom through business meetings about 10 years ago and he has been a great friend and supporter for me during the times I have gone through this health crap. He has truck accessory stores in the Chattanooga, Tennessee area and we hit it off well from the beginning. We share a passion for business, beer, and gambling (not necessarily in that order). During Tom's visit we hit the Potowatomi casino twice and fortunately both of us walked away winners; that doesn't happen very often. Thursday wasn't very good but Saturday was an excellent day for both of us. Yeehaw!! Gambling is a lot more fun when you win!
Friday we visited the Harley Davidson Museum in downtown Milwaukee and had a great time there as well. We went in not knowing what to expect and were really surprised how much we enjoyed it. If you go I highly recommend that you go on Friday and pay extra for the Back Roads Tour. This special tour costs an additional $25 and is put on by one of the museum curators. They take you into the museum archives, where they store all the pieces that are not on display in the museum. In fact many of the items are not even cataloged yet because they have so many pieces that keep being donated. They figure they have over 1 million items in the archives and only about 4500 pieces are on display for the public. Unbelievable! The coolest part of the archives is the room where they warehouse the bikes that are not on display. Over 450 bikes from 1903 to present day are palletized and stored for future display. They have a half dozen people who spend all day every day working in the archives, cataloging items, restoring bikes, and preserving items for future display. After the Back Roads Tour we spent hours in the museum proper and could have spent hours more if yours truly had not pooped out. I can tell you I will be making a return trip to finish checking everything out. And I'm not a biker! This concludes the FUN portion of today's update, now we will move on to the health updates.
I told you in a prior post about HDR Brachytherapy, the specialized form of radiation that was recommended to treat the obstinate tumor I have in my left lung. After I was healed up from my last hospital stay I decided to go ahead with this procedure and had it scheduled for this week Thursday and Friday. Well, guess what - as usual nothing in my life goes as planned. Late last week I noticed a slight rash starting on my back. We tried the usual ointments on it to clear it up but it progressed and started forming on my abdomen as well. I took pictures and sent them to my terrific nurses. They checked with the physicians assistant and called me with their diagnosis - Shingles. Holy Mackerel! What else can happen here? So anyway they prescribed a drug which should clear it up in a couple weeks. Obviously they don't want a guy with shingles hanging around the hospital so my brachytherapy has been rescheduled for 2 weeks from now, May 6th & 7th.
I guess the good thing for me is that shingles is normally quite painful because it affects the nerves but I am on so many different pain killers, including something for nerve pain, that I do not have much additional pain from this. Itching, but not so much pain. See - I really am a lucky guy!
Before I say goodbye I just wanted to mention the links I have in my post today. I've had a few questions on things I talk about in my postings so I'm hoping that by adding these that it will make it easy for you to look up more information on them. Let me know if you like them or not.
That pretty much wraps up my week. I've been told there is never a dull moment around me. But really I expect the next couple of weeks to be dull while my shingles clears up. Stress can be a trigger for shingles outbreaks so I am going to relax and try not to get worked up about anything. Breathe deep and relax, breathe deep and relax, breathe deep and relax.......
Be Well - Be Blessed!
Tuesday, April 13, 2010
I took my tire patches off, it's amazing that they had covered an area almost a square foot with 4 of these large patches but when they came off I had a small area that I now have covered with 2 inch square piece of gauze. There is still a stitch or 2 holding me closed that have to come out in the next day or 2.
We had a busy weekend - actually Saturday I didn't do much but Jessica took advantage of the beautiful weather and spent time in her gardens just weeding and cleaning them up. I think she needed a little time on her own in the fresh air, she really enjoys her gardening time. When I am in the hospital it is really hard on her having to run back and forth every day. I get crabby if I am alone too much so she spends most of the day with me and then things that need her attention at home tend to get put off. I'm the patient but she has it as hard or harder than I do. So anyway we went to mass on Saturday night then relaxed at home that night. Sunday my wonderful brother-in-law Dave came over and finished up a plumbing project he had started a while ago for us. He put in a return line that relies on heat and gravity to cycle hot water from the far end of the house. So now we have hot water at the shower in seconds instead of minutes. Before this upgrade I would turn on the shower before shaving because it took so long for the hot water to reach that end of the house. Now it's almost instantaneous! Thanks Dave!
Later that afternoon Pete (Jessica's son) came over for dinner but first we went next door to my neighbor Paul's to play slot cars on his track. He built a replica of Road America in his basement which was very fun to play on. Thanks to you also Paul!
So on Monday I was pretty sore. I was up and down the stairs a lot when Dave was here which is hard on my hips, then I was on my feet a lot at Paul's. So I paid for my fun but it was well worth it - I'd do it again next week if I had to.
I'm still waiting for an answer from my team of docs as to what the next step is going to be. Most of them were on vacation last week so I assume they have a pile of stuff to catch up on this week. I both called and e-mailed a reminder to them - I realize I am not their only patient, just their most important one! Doesn't hurt to be the squeaky wheel sometimes.
That's it for now - nothing else going on until I hear more from the docs. I'll probably be back to you later in the week or over first part of next week.
Be Well - Be Blessed!
Friday, April 9, 2010
Ray that chances were good I could go home Thursday. I asked what caused my air leak and was told they did not know. Speculation was that a small tumor on the edge of the lung could have burst causing a small hole that healed quickly but that is just a guess.
Thursday morning's X-Ray showed a little more improvement so they decided that they could pull the tube out and send me home. Hooray! Now, if you think about it, you have to be careful when pulling out a chest tube, lest you allow air back in to the place you just sucked it out of. And of course the hole from the tube has to be sealed until it heals up. So they pulled the tube out while I exhaled and before I could suck air back in immediately sealed the hole with some large sticky patches which resemble tire patches only in white. So I'm sealed up better than a steel belted radial. Now that I was free of the suction devices I could be sent home so the doc signed off on my discharge. Remember last time I was waiting forever for my paperwork to be finished? I learned it wasn't a fluke. Same crap this time, we literally waited over 4 hours before we had the ok to leave. Very frustrating but we learned this time to relax and not get too steamed up as it does nothing to help. We made it home a little before 5pm and from that time on I was asleep more than I was awake. This new recliner we just selected for me is soooo comfortable! So now, Friday, I just have to relax and wait for my body to heal. I was told I can remove my "tire patches" on Saturday and fortunately they are not real uncomfortable so I'll be fine until then.
Once again - Thanks for looking in on me. I really appreciate it as always. As a way of saying thanks here's a weekend sports viewing tip for you. Saturday night is the NCAA hockey championship game featuring our very own Wisconsin Badgers against the Boston College Golden Eagles in a repeat of the teams from the 2006 championship game. Let's hope for a repeat of a Badger Victory!
We'll talk again soon, in the meantime.....
Be Well - Be Blessed!
Thursday, April 8, 2010
Obviously that was not the answer so the PA described to me the process he would use. First I would get some "Happy Juice", a combination of pain killers and anti-anxiety that would relax me to help me through the procedure. When those have kicked in he would start anesthetizing the area where the tube would go in between the 5th and 6th ribs on the left side. To do this he would insert a needle and inject a little anesthetic in the area which BURNS for 5-10 seconds, then work it in by rubbing the area, then inject a little more. Further and further in he would repeat this process until I was deadened all the way in to my chest cavity. When I was good and deadened he would drill a hole and insert a tube the size of a garden hose (almost) all the way through my body (or so it seemed). After the tube was in place they would hook it up to a water box, which acts as a one-way valve, allowing air and fluid out but not letting back in. The tube would stay in place for a day or so, allowing all the air and the small amount of fluid that was in there as well to escape. And so he went ahead and did everything the way just the way he had described. I will confess this was not the most pleasant medical procedure I have ever gone through but I will also confess that he did a good thing by giving me the Happy Juice first because I can recall very little of the actual procedure right now. What I do remember is it hurt like a son-of-a-gun.
Jessica was at my side while they did this, holding my hand and basically trying to keep me from squealing like a baby. She told me that when the tube pierced the chest wall and entered the cavity they heard a "woosh" of air coming out. That was the clue the PA was looking for - he was in the right spot. Once he was there it was a matter of securing the tube in place with a couple stitches and a wad of tape. After they had me wrapped up they attached the valve box to suction so that it would work more efficiently for a while. Then I was told "We're all done" and I could sit back and relax for a day or so. Relax - yea right. You try to relax with a garden hose hanging out of your side that is attached to a valve the size of a tackle box. Fortunately they only kept it attached to the suction line for a short time, then it was only the valve box I had to move around with me.
That's it for now - Next Episode coming shortly. Ken goes home again.
We all know the answer to that one, don't we? Get your butt back to the hospital so we can check it out. I said "OK, Thursday looks good for me". After a brief chuckle the nurse replied "No, no, no. You need to come NOW. This is not something you can put off until it is convenient". Somehow I knew that would be her answer. "How many days is this latest vacation I won?" I asked the poor girl. I got the standard "1 or 2 days" response so I decided I should plan on 3 or 4 days. After a little more discussion I agreed I would be there within a few hours and she would notify the team to prepare for me.
On the ride in to the hospital we encountered a large traffic jam from an accident so Jess and I had plenty of time to speculate on what caused this latest crisis and of course came up with no answers.
Next episode - Popping the air leak!
Thursday, April 1, 2010
So let's get the health stuff out of the way. We visited with the radiation oncologist on Tuesday and learned that I may or may not have a couple options. The first thing we have to learn is exactly where this bleeding tumor is. (And yes, unfortunately is is still bleeding on occasion) They are still not sure if the bleeding is happening at the same place as it was in 2007 or if it is from a new spot further down the bronchial tube. I thought it was kind of odd that they did not know but I guess when they are working through the bronchoscope they don't know exactly where they are unless they simultaneously use some type of imaging to see where the scope is. Makes sense when they explain it. So the first thing I need is a new CT scan which I will get next Tuesday. Once they have the scan and know where the tumor is then we formulate a plan. Here is how the plan will go - if it is a new tumor in a new spot I probably can get conventional external beam radiation (the same process I have had 5 times already). But if it is the same tumor as before I will not be able to get external radiation as I have been given the maximum lifetime dose to that area. So what do they do? Go high tech of course! They can do an internal form of radiation called High Dose Rate Brachytherapy or Endobronchial Brachytherapy. What they do is another bronchoscopy then they feed a catheter through the bronchoscope to the exact spot of the tumor (which we will know after the CT) then attach a high dose rate machine to the catheter so they can apply radiation directly to the tumor without damage to the surrounding tissue like you get with external beam radiation. They advance this catheter 5mm at a time until they have covered the entire tumor. I am told this would probably be repeated twice more for a total of 3 treatments. I can do it as an inpatient and they would do them 6 hours apart so I would be in the hospital just 1 night and the entire course of treatment would be done. I can also do it as an outpatient but then it would be done over a few days and the scope would have to be removed and reinserted each time. If it comes to doing this I will have to ask a few more questions before making my decision. Not a lot of institutions do this and very few specialists are qualified to do it. Kind of scary to think about.
The doctor also reminded me of another option that they have talked about a few times which is systemic radiation. In this process they inject a radioactive isotope such as Strontium 89 directly into your veins. The isotope seeks out tumors and attacks them. This form of radiation is especially effective for bone tumors. Because I have so many bone tumors in my vertebrae and pelvis this may be a smart choice to consider. However I really need this bleeding to stop before resuming Nexavar so I'm thinking I need to attack the bronchial tumor directly.
Since it seems all docs take the week of Easter off so I will not be meeting with anyone until the 12th of April. That gives me a little time to think about it. I also am considering getting a 2nd opinion since they have been down my throat so many times already. I have 100% confidence in the team of specialists I have at Froedtert but sometimes it doesn't hurt to get input from someone else. There are lots of new procedures and new wonder drugs being developed all the time. I like to think I stay on top of new developments in the world of Thyroid Cancer but I would be kidding myself if I thought I knew about every possible option. On the other hand a part of me says "oh no - not again". Finding more specialists you can trust, more travel (I don't think I will find anyone in Milwaukee), more filling out health history forms and educating doctors on my unique history. It's a lot of work; very tiring and frustrating and I honestly don't know if I am up for it. You might think it is stupid of me to think that way when we are talking about trying to find a new way to extend my life but it's the honest truth. My life revolves around doctors, nurses, hospitals, and clinic visits and adding more onto that already large pile of manure is not a pleasant thought. Sometimes I just want to say "Enough!", lay down and ignore the world for a while.
Well I certainly have blathered on long enough about this adventure. Unfortunately it will probably not be resolved for at least another 10 days. Who knows? Maybe by then the bleeding will have 100% stopped. Let's all say a little prayer for that to happen and maybe, just maybe, we will have a small miracle work our way.
I have more to tell you regarding my visits with the palliative care team but the hour is late and I need my beauty rest. I will be back to you - I promise! If it is not before Easter I want to wish all of you a happy, healthy, blessed Easter. If it is not a habit for you go to church - you may learn something!
Be Well - Be Blessed!
Saturday, March 27, 2010
I finally got fed a little last night, about 48 hours since my last "meal" and a full feeding this morning. I have lost 2.2 pounds while here, that is on top of the 6 pounds I lost over the last month. I have talked to the dietician about ways to pump me up again. Not back to the 225lb days but more like 170, which is almost 20 pounds away.
I found out I am scheduled for another radiation consult on Tuesday, I'm getting to be a regular in the radiation oncology department also. When the receptioists greet you by name you know you have spent too much time in that area! Why more radiation? Because they did a biopsy of the lesion they found yesterday and there were cancer cells present. That means we have to knock those cells senseless so that the lesion can't grow back and cause the same problem in a few months. This is a similar process to what I went through in 2007 when I had the major bleeding problem.
You will more from me shortly - they finally got my paperwork done!
Be Well - Be Blessed!
Friday, March 26, 2010
Just a quick note before it's bedtime for bonzo. My head cleared enough to write something coherent and I know many of you are waiting for some type of word.
The bronchoscopy today was successful, performed by the same doc that did my chest tubes in November. He found a lesion in my left lung and was able to cauterize it with the laser. I am told that I will still need radiation to that area to make sure it doesn't come back again but this was a necessary first step.
Thank you all for your prayers, positive thoughts, and notes the last couple days. I am once again humbled by your concern. I'll be back in touch soon. I expect to be released from the hospital Saturday.
Love you all!
Be Well - Be Blessed
Thursday, March 25, 2010
As Gomer Pyle would say Suprise -Suprise-Suprise! I got slapped back in the hospital today and to be honest I am not exactly pleased. We came in this morning to discuss whether I needed a bronchoscopy to try to find the source of the bleeding I have been having. We decided that yes I needed it so off we went to the procedure room where they did it under the twilight anesthetic. They discovered I have a couple areas in my lungs that are bleeding and they believe that they can cauterize them with a laser. That means they have to have a full fledged surgeon do another bronchoscopy where they put me completely under using general anesthesia. They thought they could get it done today if they admitted me to the hospital so that's what they did. Except of course plan A never works, so 3.5 hours later they decided it couldn't be done today. Now I am locked up here until tomorrow with no promise that I will even be released after the procedure tomorrow, which they say will get done "sometime" tomorrow. Lovely. So I get all the uncomforts of sleeping in a hospital bed with an IV hanging out of me and people bothering me every few hours at night. How cool is that?
I don't understand why I was admitted in the first place and they certainly are disorganized here tonight. 2 different lab draws within 2 hours, nobody can decide if I should be allowed to eat, and then they brought me morphine for pain relief which I am very allergic to. Personally I think they waited until I was under the twilight sedation so I wouldn't put up a fuss about being admitted. I just am completely baffled as to why I am in the hospital instead of in my comfy chair at home resting up for bronchoscopy round 2.
Heard enough of my belly-aching? Sorry, I just have been on a rant since I found out we're not doing anything more today. Be glad you are not my wife! She's had an earful all night!
So anyway I will be back to you to let you know what the results of this procedure are. It will probably be sometime over the weekend. As always, thanks for checking in on me and God bless you
Saturday, March 20, 2010
Yesterday (Friday) we trekked once again to Froedtert's GI lab for my fourth throat adventure. This time the purpose was to find the cause of continued bleeding. We had surmised that one or more of the 3 esophogeal dilations had caused some damage that was not healing. Alas, this hypothesis turned out to be incorrect and this trip down esophogeal lane was nothing more than an expedition down the wrong fishing hole. My throat looked good but the doc said he did see some blood pooled in my trachea above the vocal cords. So now what? Good question, I don't know. If you have been following my adventures from the beginning you remember that my writings started in 2007 when I had excessive bleeding from a tumor in my bronchial tube. My current situation has nowhere near the same quantity of blood that I had 3 years ago but my concern is that resuming Sorafenib will cause even more bleeding. What to do, what to do?
At this point I have a few days to stew over what the next step should be. I meet with my oncologist Tuesday and we will discuss it then. My guess would be another expedition down the other fishing hole, my trachea. But we may just start the sorafenib and see what happens. I
have had so many starts and stops with this drug that hate to do that but I'm willing to listen and consider all points of view. The flip side is that I hate to go through another procedure that has limited value. What to do, what to do? I'll be back in touch with you next week.
Thanks for checking in on me.
Be Well - Be Blessed!
Wednesday, March 10, 2010
Today was the last of my 10 radiation treatments to my pelvis. Something to celebrate! The pain that I talked about in the last post got gradually better over the weekend and then when I restarted treatments on Monday it reared its ugly head again. So I am hoping that now that I am completely done I will get relief that continues until I can reduce my pain meds again. Let's get off this roller coaster.
I'm waiting to find out the next step, should have an idea in the next few days. The hope is to go back on Sorafenib but I am waiting for word on the bleeding I have had in my throat. Once I know what is going on there we can move forward. It is important for me to get to the next step in prevention soon, as my disease seems to moving forward quickly. I need to be on some form of systemic treatment, as spot treatments aren't going to do it for me anymore.
Also in the last post I mentioned the party I threw last year which prompted 2 requests for pictures from it. I had said at the time that I would try to post photos online but never did. Now that I am using Google's service I can use their photo service. You do not have to register or anything to view them so if you are interested have a look. There are 150 pictures, some are duplicates because I asked several friends to send me theirs. Feel free to relive the evening or see what you missed.
Until next time...
Be Well - Be Blessed!
Sunday, March 7, 2010
I'm sorry to leave you hanging so long since the last post. Quite honestly I've felt so much like a Yo-Yo it's been hard to lasso enough ambition to do anything. I won't belabor it with a day by day accounting ups and downs of last week but suffice it to say I have had more downs lately. Must be a poor Yo-Yo operator! First off I was able to make a decent recovery from the nausea attacks of Thursday and Friday. Last week Saturday afternoon and Sunday were actually pretty darn comfortable!
Radiation treatments continued all week and they continued to inflict damage to me. I have felt some improvement in the hip areas that were giving me problems but I have traded that for some new areas! Any of you that were at my party a year ago may recall that I was hobbled by pain that started in my lower back and extended with both pain and numbness through my rear end and down my right leg. This past week I have had a mirror image of that - same stuff but on the left side. I have seen more docs and nurses this week than I care to remember in an effort to get this outbreak under control. I met with the palliative team who upped my pain meds yet again as well as the radiation oncology team who showed me the plan again and assured me that they were hitting those areas with the treatments and could do no more than they were doing. As I have explained before, I know I have a lot of disease in the bones throughout my spine and pelvis but it was still a little scary when they showed me the scan again and I could see the extent of tumor burden in my pelvic region. I better make sure I don't slip on the ice and take a fall because it sure looks like that area is weakened considerably!
So - bottom line for the week has been significant pain from the hips down through my left leg. I have not been able to get it under control no matter what kind of chemicals I threw at it. Sitting, standing and laying down all were a challenge. I'll be reasonably comfortable for a short time before things flare up and I have to change positions.
I know that it is impossible for doctors to tell someone exactly what kind of reactions to expect from these treatments but it's frustrating to have all these new things developing when I was assured only minor side effects would surface. They say that what I am experiencing now is a "pain flare" which they describe as an unexpected temporary increase in pain. They think it is being caused by the radiation and are hoping that when the treatments are done the flare will subside. The thing with radiation is that it continues to work for weeks after the treatments have stopped, which is great for fighting cancer but not so great if you are waiting for a pain flare to subside. I've had 2 days this weekend with no treatments and no relief from pain so I expect this "discomfort" will continue well past my last treatment on Wednesday. Terrific.
My company will be displaying our wares at the Sports Show at State Fair Park this weekend. The show runs 5 days, Wednesday through Sunday. It is our most important retail marketing effort of the year and I feel like a schlepp for not participating. But there is just no way I can spend any time at all on my feet. I probably would not even make it from the front door to our booth without stopping a few times. But if you go please stop in to see us. Spend a few bucks,
shoot the breeze, drop my name, drool over the cool accessories, whatever makes you happy. Booth 1320 in the center part of the hall.
Before I let you go - One last important piece of information. Last week I described a new medication I'm taking as melt-in-your-mouth. It turns out the proper medical terminology for that type of pill is "Orally Disintegrating". When I learned this I could only think of the old M&M commercials where they claimed that M&M's "melt in your mouth not in your hands." I'm really glad that medical people stay out of the marketing business and vice-versa. Would you buy a product that Orally Disintegrates?
Be Well - Be Blessed!
Friday, February 26, 2010
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.
Be Well - Be Blessed!
Wednesday, February 24, 2010
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 be......you 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
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
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
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
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
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
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.
Be Well - Be Blessed!
Sunday, January 31, 2010
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
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.
Be Well - Be Blessed!
Wednesday, January 27, 2010
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
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.