Hey Friends,
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!
Wednesday, April 21, 2010
Tuesday, April 13, 2010
Well my beloved Badger hockey team got smoked in the championship game Saturday night, actually they got smoked in the 3rd period. I'm not a professional hockey analyst but something sure changed in a hurry, it went from a tightly contested fast paced game to a blowout. Anyway, since I am one of very few people I know who actually care about hockey I'll quit talking about it. Except for one thing - the Stanley Cup playoffs start this week - Go Red Wings!
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!
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
Sealed Up and Healing
So the combination of drugs they gave me let me sleep OK Tuesday night, even with the hose attached to me. Wednesday was spent mostly in a daze with me asking a lot of questions because I had severe memory lapses of Tuesday. I was told that I should be happy I didn't remember most of what happened and I'm OK with that. Sometimes not knowing is better, but I did learn that the technical name of my condition is a pnuemothorax, pnuemo meaning air and thorax your chest. So I had air in my chest. Logical, isn't it? They took an X-Ray Wednesday morning that showed great improvement, the lung had come back nicely. I talked with the surgeon, not the one who worked on me but the one in charge of my care, and he said after looking at the X-
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.
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
Pop Goes the Air Leak
Once we got to the hospital it didn't take long to get checked in and get comfy in my room. The nurse was quick to get me settled and ready for the Physician's Assistant who had been called in to take care of me. When he came in the very first thing I wanted to know is what happened and why. I really liked the way he explained it. Your lungs are held within your chest cavity much as they would be held in a glass jar. Your lungs should always be pressed firmly against the inside of the jar (or chest wall). In my case somehow there was an air leak from my lung into the chest cavity and since there is no place for the air to escape the chest cavity it forced my lung to collapse. In order to get the lung re-inflated we have to remove the air from the cavity. "Makes sense to me" I said, "so can I belch or something to remove the air?"
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.
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.
Lung Problems Round 2 or 3 or 4.....!
Here I am, back at my second home, the west wing of Froedtert Hospital. Are you ready for the story? I was scheduled for a CT scan of my chest Tuesday so that the oncologist and radiation oncologist could follow up on locating the bleeding tumor. But of course the best plans humans make are always supplanted by some the plan God has for us. After we had arrived at home I was preparing my delicious lunch of Ensure Plus when the phone rang. We can always tell when someone from the hospital is calling because it shows the area code and then all zeroes across the caller ID. Sure enough - It was a nurse from the lung surgeon's office telling me that the CT scan showed my left lung was over 40% collapsed. Oh happy day. "What does this mean? What causes this? Was it the tumor" I asked. "Are you short of brenath? Do you have any pain in your chest"? She queried. After answering each others prelimimary questions I asked the big one - "What now?"
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.
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
Where oh Where is That Tumor?
Where does the time go? I keep telling myself to get the blog update done and then I realize another day has passed me by. I am so sorry to keep you all in limbo.
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!
Ken
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!
Ken
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