The last couple of days have been pretty anticlimactic after the two days of harvesting, but that doesn’t mean that we have been without some level of excitement. Due to the fact that the harvesting process not only took stem cells out of my system, but also robbed me of most of my platelets, I have continued to bleed from the site of my port.
Since the installation on Tuesday I have had two dressings applied on Tuesday, one on Wednesday, two on Thursday and one on Friday. These are supposed to last 48 hours. Thursday was the most involved, however, as I was at Jason’s baseball game when I noticed that blood was dripping down my chest.. The gauze had reached its saturation limit and started to trickle blood down the outside of the two tubes.
It wasn’t so bad that we needed to dial 911, but it was enough to make another trip up to the Mayo. We found a ride home for Jason and made the trip to Scottsdale. We had been told earlier in the day that the Infusion department was manned until 9 PM so we felt we had enough time to get up there and get it done. To our chagrin, when we arrived at 8 PM it was abandoned. I knew what this meant—a dreaded trip to the emergency room (the home of lost souls).
One of the good things about the Mayo ER is that it isn’t anything like the TV series. The bad thing is it isn’t anything like the TV series. There were very few people waiting, which was a good thing. The bad thing is that because demand is relatively light there is only one doctor available, not that I needed one. After waiting for 45 minutes, we were escorted back into the treatment room area where we were given our own room. There we waited for another 20 minutes. Finally, a nurse entered and had me redressed in 10 minutes. This is where it got ridiculous.
I then had to wait another 30 minutes for a doctor to come in and have me tell him why I was there and that he didn’t need to worry about why I was bleeding. He then had to write discharge papers which took another 15 minutes. Eventually the nurse joined us and told me not to lift any pianos. Two hours to have a bandage removed, my skin and wound cleaned and a new bandage put on. If only my girl friend Chan had been up in the infusion room.
Julia and I finally got home at 11 PM.
The dressing I received today at 2:30 was already soaked with blood at 6 PM. Now I need to decide if I should just let it go and hope it clots or go in tomorrow at 7 AM so I don’t miss Justin’s graduation. This is the only reason that they have not started the actual transplant. I think I’ll hold off. Can’t miss Justin’s big day.
Friday, May 29, 2009
Wednesday, May 27, 2009
May 27, 2009 Extraction, Round Two
In the overall scheme of things, today was pretty easy. Up at 5:30 (I actually woke up to the alarm, hallelujah!) and off to the Mayo for the usual, two shots and a blood test. The blood test was the first taken from my new catheter. It really wasn’t necessary as they were going to start the second round of the harvest even without the feedback, but they just want to know where I started the day with regard to my blood cell make-up.
The harvest started at 8:30, so I was going to be in bed for the next five hours. After about an hour, we received the results of the blood test which, for the most part, was good news. The number associated with the stem cells was well over the required 10 at 32. That meant that there was a good chance that today might be the last day of harvesting, which is very good.
In addition, my white blood cells were through the roof which is not unusual with this type of procedure. However, my platelets were well below normal levels. After today’s session, they will probably be only a quarter of what is normal. I could probably bleed to death from a paper cut, so I am making Julia cut up my meat for a while.
While I have the blood flowing in and out of the machine, they also give me fluids to help the process and help maintain calcium in my system. Yesterday, I handled them without a hitch as I was dehydrated because they didn’t let me drink anything after midnight the night before. Today, I was not so lucky. Because they don’t want to unhook you from the machine, you have to use a small hand held urinal if you have to extricate liquids from your system. This was something I really wanted to avoid.
Even though I used the men’s room just before the process, after about 2 hours, I couldn’t wait any longer. I asked Marion (my nurse) to close the curtain from the rest of the packed room and get me one of the containers. She obliged and my lovely wife offered to help with the process as I was hooked up to the machine with five tubes hanging from me. It was OK until she suddenly found the situation humorous.
Just what I needed. I’m trying to make as little noise as possible since there are about 20 people just outside the curtain. (Do you know the government once commissioned a group to study what was the best way to minimize the sound of urination into a toilet? I digress.) Needless to say, despite my intense desire to alleviate some of the excess liquid in my body, I just couldn’t get the spigot to work. At this point, Julia is splitting a gut and I’m getting comments from the peanut gallery on the other side of the curtain. All of those extra credits that she had earned over the last four months were just washed away.
After a few moments that seemed like fifty, I kindly asked her to leave. Once she was gone, the plumbing worked as it should and I took care of my situation. OK, so I admit I have a problem urinating when people are watching (especially when they act like it is a stand up comedy routine). Sue me.
We finished up with the harvest at about 1:30 and Marion changed my bandage for the second time. I’ll probably be making the trip up to the Mayo every other day just to have that done. Julia and I grabbed some lunch and I crashed at home about 3:30 waiting for the call to see if I needed to get more cells harvested on Thursday.
At 6 PM the call came and over 5 million stem cells were harvested. That puts me at over 9 million and more than enough for the transplant. I’ll still go up to the Mayo tomorrow for a redressing of the wound, but no shots and no harvest. I might actually make it into work for a bit.
The harvest started at 8:30, so I was going to be in bed for the next five hours. After about an hour, we received the results of the blood test which, for the most part, was good news. The number associated with the stem cells was well over the required 10 at 32. That meant that there was a good chance that today might be the last day of harvesting, which is very good.
In addition, my white blood cells were through the roof which is not unusual with this type of procedure. However, my platelets were well below normal levels. After today’s session, they will probably be only a quarter of what is normal. I could probably bleed to death from a paper cut, so I am making Julia cut up my meat for a while.
While I have the blood flowing in and out of the machine, they also give me fluids to help the process and help maintain calcium in my system. Yesterday, I handled them without a hitch as I was dehydrated because they didn’t let me drink anything after midnight the night before. Today, I was not so lucky. Because they don’t want to unhook you from the machine, you have to use a small hand held urinal if you have to extricate liquids from your system. This was something I really wanted to avoid.
Even though I used the men’s room just before the process, after about 2 hours, I couldn’t wait any longer. I asked Marion (my nurse) to close the curtain from the rest of the packed room and get me one of the containers. She obliged and my lovely wife offered to help with the process as I was hooked up to the machine with five tubes hanging from me. It was OK until she suddenly found the situation humorous.
Just what I needed. I’m trying to make as little noise as possible since there are about 20 people just outside the curtain. (Do you know the government once commissioned a group to study what was the best way to minimize the sound of urination into a toilet? I digress.) Needless to say, despite my intense desire to alleviate some of the excess liquid in my body, I just couldn’t get the spigot to work. At this point, Julia is splitting a gut and I’m getting comments from the peanut gallery on the other side of the curtain. All of those extra credits that she had earned over the last four months were just washed away.
After a few moments that seemed like fifty, I kindly asked her to leave. Once she was gone, the plumbing worked as it should and I took care of my situation. OK, so I admit I have a problem urinating when people are watching (especially when they act like it is a stand up comedy routine). Sue me.
We finished up with the harvest at about 1:30 and Marion changed my bandage for the second time. I’ll probably be making the trip up to the Mayo every other day just to have that done. Julia and I grabbed some lunch and I crashed at home about 3:30 waiting for the call to see if I needed to get more cells harvested on Thursday.
At 6 PM the call came and over 5 million stem cells were harvested. That puts me at over 9 million and more than enough for the transplant. I’ll still go up to the Mayo tomorrow for a redressing of the wound, but no shots and no harvest. I might actually make it into work for a bit.
Tuesday, May 26, 2009
May 26, 2009 Made It!
The fact that I actually am here typing is great news. I have survived the scariest thing I felt was still ahead of me. Yes, I made it through the placement of my port. I don’t want to get too far ahead of the rest of the story, but I thought I would get that out first so that you all would know that I was still alive. Now for a little detail.
In the same fashion that we started the last three days, today began at 5:30 when the alarm sounded. Actually it started at 4 AM for me because I couldn’t sleep. We jumped in the car and headed to the Mayo Hospital. Today was a little different in that I had to take a blood test before the injections to see if I had enough stem cells in my blood to start the harvest. After that was done, I had my daily two injections. We were told at the time that it would take about an hour and a half before we would get the results of the test, so I headed down to Radiology where the port would be installed.
For whatever reason, I was not in a state of panic. My blood pressure was a little higher than normal, but nothing through the roof. I was early, so we had to wait a while, but at about 9:00 they took me back to the waiting/recovery area where I got on the hospital gown and waited. This time I was able to keep my underwear on, so there were no incidents similar to when I had the bone marrow biopsy. At about 10 o’ clock, they wheeled me into the operating area.
After doing the needed shaving of my chest and the sterilization of the affected area on my neck and upper chest, they introduced me to the doctor doing the insertion and then started gowning the area around the incisions. The nurse gave me an injected into the IV to get me to that famous “twilight” state. Only problem was, I was still 100% there. After a few minutes, I started to get a little nervous and asked when it was going to kick in. She said it already should have, so she gave me another shot and said it would take a minute.
By this time, half of my face and all of my chest was covered and my head was turned to the left side. One minute passed and nothing happen and then another minute passed and I was just as lucid as I ever am. (No snide comments out there.) All I could think about were those people that only get half of the required anesthetic and can feel all of the pain but are paralyzed and can’t tell anybody. Lucky for me, this wasn’t major surgery so I was still capable of letting them know I was still able to answer a Jeopardy question, if needed. Thankfully, they gave me another shot and all of a sudden I am awake and it is all over. Thank God for drugs.
I then had to wait for about 30 minutes before they would let me go, so they gave me a plain turkey sandwich on wheat. Not my first choice, but better than nothing. Probably cost me $75.
While we were waiting, I had received a voice mail that said that I not only qualified to go ahead with the harvest, but my number was more than twice what was needed. I guess the chest pain was worth it. Up to the fourth floor we went and got strapped into the harvest machine.
My nurse was a nice lady by the name of Chan. She had given me my shot earlier in the day and had given me the shot on Saturday. She was to spend the rest of the day with me, over five hours. This is not one of those situations where the patient gets hooked up and the nurse walks away. She as at the machine making sure that everything was running properly for all but about five minutes of the five hours. Chan knows her stuff as she was a nice drill sergeant. I was not allowed to move a muscle for the five hours. When you move it caused more non-stem cells to get into the mix. The cleaner the mix, the better the end solution.
When the five hours concluded, I had gained 1.5 pounds due to the saline solution that I was given. They monitor your weight through the entire process. This will also be the case when I enter the hospital. There is a tendency to retain water and they want to watch that extremely closely. After we returned home, we received the call confirming that we would have to return on Wednesday. However, I had an exceptional day as 4.15 million stem cells were collected. They set 8 million as the minimum before a transplant can take place. Most people have to go three days with some going four. I have been told that the second day of collection is often more than day one. Hopefully that is the case and I can complete the task in just two days.
Needless to say the incisions are extremely sore and I am pretty beat and it is just 9 PM. I have to be very careful when showering as the incisions cannot get wet or the risk of infection increases significantly. It could be a morning of wrapping in Saran Wrap.
In the same fashion that we started the last three days, today began at 5:30 when the alarm sounded. Actually it started at 4 AM for me because I couldn’t sleep. We jumped in the car and headed to the Mayo Hospital. Today was a little different in that I had to take a blood test before the injections to see if I had enough stem cells in my blood to start the harvest. After that was done, I had my daily two injections. We were told at the time that it would take about an hour and a half before we would get the results of the test, so I headed down to Radiology where the port would be installed.
For whatever reason, I was not in a state of panic. My blood pressure was a little higher than normal, but nothing through the roof. I was early, so we had to wait a while, but at about 9:00 they took me back to the waiting/recovery area where I got on the hospital gown and waited. This time I was able to keep my underwear on, so there were no incidents similar to when I had the bone marrow biopsy. At about 10 o’ clock, they wheeled me into the operating area.
After doing the needed shaving of my chest and the sterilization of the affected area on my neck and upper chest, they introduced me to the doctor doing the insertion and then started gowning the area around the incisions. The nurse gave me an injected into the IV to get me to that famous “twilight” state. Only problem was, I was still 100% there. After a few minutes, I started to get a little nervous and asked when it was going to kick in. She said it already should have, so she gave me another shot and said it would take a minute.
By this time, half of my face and all of my chest was covered and my head was turned to the left side. One minute passed and nothing happen and then another minute passed and I was just as lucid as I ever am. (No snide comments out there.) All I could think about were those people that only get half of the required anesthetic and can feel all of the pain but are paralyzed and can’t tell anybody. Lucky for me, this wasn’t major surgery so I was still capable of letting them know I was still able to answer a Jeopardy question, if needed. Thankfully, they gave me another shot and all of a sudden I am awake and it is all over. Thank God for drugs.
I then had to wait for about 30 minutes before they would let me go, so they gave me a plain turkey sandwich on wheat. Not my first choice, but better than nothing. Probably cost me $75.
While we were waiting, I had received a voice mail that said that I not only qualified to go ahead with the harvest, but my number was more than twice what was needed. I guess the chest pain was worth it. Up to the fourth floor we went and got strapped into the harvest machine.
My nurse was a nice lady by the name of Chan. She had given me my shot earlier in the day and had given me the shot on Saturday. She was to spend the rest of the day with me, over five hours. This is not one of those situations where the patient gets hooked up and the nurse walks away. She as at the machine making sure that everything was running properly for all but about five minutes of the five hours. Chan knows her stuff as she was a nice drill sergeant. I was not allowed to move a muscle for the five hours. When you move it caused more non-stem cells to get into the mix. The cleaner the mix, the better the end solution.
When the five hours concluded, I had gained 1.5 pounds due to the saline solution that I was given. They monitor your weight through the entire process. This will also be the case when I enter the hospital. There is a tendency to retain water and they want to watch that extremely closely. After we returned home, we received the call confirming that we would have to return on Wednesday. However, I had an exceptional day as 4.15 million stem cells were collected. They set 8 million as the minimum before a transplant can take place. Most people have to go three days with some going four. I have been told that the second day of collection is often more than day one. Hopefully that is the case and I can complete the task in just two days.
Needless to say the incisions are extremely sore and I am pretty beat and it is just 9 PM. I have to be very careful when showering as the incisions cannot get wet or the risk of infection increases significantly. It could be a morning of wrapping in Saran Wrap.
May 25, 2009 The Life of Riley
I’m not sure what I like better about three day weekends, the fact that they give you three days off of work or the fact that the next week of work is only four days. Can’t complain about either except that my four days of work this upcoming week are at the Mayo Clinic Hospital. I’m not going to dwell on that because I had one of the best weekends that I have had in a long time.
As soon as I successfully convinced Justin to take up the game of baseball, watching he and Jason play has become one of my greatest joys. Never much of a ball player, myself (I peaked at 12), I have somehow managed to father two pretty good players. Julia and I have spent the last eight summers driving everywhere, often in separate cars, driving in different directions, watching the boys play. This weekend, however, offered us a unique opportunity.
In between seasons with spring and summer baseball, I entered both of the boys in a tournament being played in Surprise, Arizona. Jason was going to play in the 15 year old tournament and Justin in the 17-18 year old tournament. However, turnout was not as good as the organizers anticipated, so they put all of the teams together into one big tournament. Ironically, Justin’s team was going to play Jason’s team which certainly isn‘t the ideal situation for us as parents.
I spoke to the coach putting the teams together for the Angel’s organization and he was kind enough to put both of the boys on the same team. This is something that had happened for just a couple of games over the years, usually in fall baseball which tends to be very laid back. This would be for four or five games in a competitive tournament, which made it great. Justin wasn’t initially too happy because it put him on a team of 15 and 16 year olds and reduced his chances of winning the tournament significantly, but he understood.
Saturday and Sunday turn out to be two of the best days I have ever spent watching baseball as both of the boys play exceptionally well leading the team to the upset victory in the championship game. In that game, Justin batting fourth and Jason batting fifth were 5 for 5 with three walks, three doubles, five runs and five runs batted in between them. Justin wore number 11 and Jason number 1 and I had a great photo op lost when they were talking to the coach with their backs to me. Hard to explain how it looked but little brother wearing 1 and big brother wearing 11 looked great. Sadly, I had forgotten my camera. Oh well.
On top of that, we also attended the wedding of one of my co-workers in the Purchasing department, Nicole Ban. Had a great time, but just didn’t have a great deal of energy as the toll of two games in the 100 degree sun and the injection that I started receiving that day knocked me out. Closed out the weekend by seeing “Terminator” and “Star Trek.” The geek in me really showed on Monday, but I won’t be going to many movies in the near future, so Julia put up with my needs.
Of course the weekend wasn’t exactly perfect. That injection on Saturday was the first of three, all of which were scheduled for 7:30 in the morning. Not the end of the world, but having to drive almost one hour to receive the 2 minute injections almost pushed me over the edge. Julia, of course, was great and got up at 5 or 5:30 to join me on the trips so that eased the pain somewhat.
These injections are designed to stimulate the production of stem cells in my bone marrow. These cells are then forced into the blood by the over crowding that takes place inside the bones. If it were not for this somewhat new technology, I would have to suffer through a rather unpleasant procedure extracting marrow from my bones.
The side effects are rather minimal as the double shot that I will be getting for seven days makes you sleepy and brings along with it bone discomfort and headaches. The bone discomfort is a welcomed one in that you know the process is working and cells are being manufactured. The discomfort is hard to explain but you have general soreness where major bones reside. Mine has been limited to my upper body. It doesn’t feel too bad when I lie down, but can be a little bothersome when I’m upright. I view this as a small price to pay.
This is really the beginning of the transplant process. The next big step will be tomorrow morning after I receive the fourth round of injections. I then get my blood tested to see if the process is working well enough for me to start the harvesting. After getting blood test number 5,000 out of the way, it is off to minor surgery (not sure who labeled this “minor” as they will be cutting my jugular vein to place the catheter just north of my heart.)
If all goes well and my blood comes back acceptable, I will get hooked up to the extraction machine for four to five hours. If I don’t have enough cells available, it is back for another injection and then home with the hope that the following day brings better results.
As soon as I successfully convinced Justin to take up the game of baseball, watching he and Jason play has become one of my greatest joys. Never much of a ball player, myself (I peaked at 12), I have somehow managed to father two pretty good players. Julia and I have spent the last eight summers driving everywhere, often in separate cars, driving in different directions, watching the boys play. This weekend, however, offered us a unique opportunity.
In between seasons with spring and summer baseball, I entered both of the boys in a tournament being played in Surprise, Arizona. Jason was going to play in the 15 year old tournament and Justin in the 17-18 year old tournament. However, turnout was not as good as the organizers anticipated, so they put all of the teams together into one big tournament. Ironically, Justin’s team was going to play Jason’s team which certainly isn‘t the ideal situation for us as parents.
I spoke to the coach putting the teams together for the Angel’s organization and he was kind enough to put both of the boys on the same team. This is something that had happened for just a couple of games over the years, usually in fall baseball which tends to be very laid back. This would be for four or five games in a competitive tournament, which made it great. Justin wasn’t initially too happy because it put him on a team of 15 and 16 year olds and reduced his chances of winning the tournament significantly, but he understood.
Saturday and Sunday turn out to be two of the best days I have ever spent watching baseball as both of the boys play exceptionally well leading the team to the upset victory in the championship game. In that game, Justin batting fourth and Jason batting fifth were 5 for 5 with three walks, three doubles, five runs and five runs batted in between them. Justin wore number 11 and Jason number 1 and I had a great photo op lost when they were talking to the coach with their backs to me. Hard to explain how it looked but little brother wearing 1 and big brother wearing 11 looked great. Sadly, I had forgotten my camera. Oh well.
On top of that, we also attended the wedding of one of my co-workers in the Purchasing department, Nicole Ban. Had a great time, but just didn’t have a great deal of energy as the toll of two games in the 100 degree sun and the injection that I started receiving that day knocked me out. Closed out the weekend by seeing “Terminator” and “Star Trek.” The geek in me really showed on Monday, but I won’t be going to many movies in the near future, so Julia put up with my needs.
Of course the weekend wasn’t exactly perfect. That injection on Saturday was the first of three, all of which were scheduled for 7:30 in the morning. Not the end of the world, but having to drive almost one hour to receive the 2 minute injections almost pushed me over the edge. Julia, of course, was great and got up at 5 or 5:30 to join me on the trips so that eased the pain somewhat.
These injections are designed to stimulate the production of stem cells in my bone marrow. These cells are then forced into the blood by the over crowding that takes place inside the bones. If it were not for this somewhat new technology, I would have to suffer through a rather unpleasant procedure extracting marrow from my bones.
The side effects are rather minimal as the double shot that I will be getting for seven days makes you sleepy and brings along with it bone discomfort and headaches. The bone discomfort is a welcomed one in that you know the process is working and cells are being manufactured. The discomfort is hard to explain but you have general soreness where major bones reside. Mine has been limited to my upper body. It doesn’t feel too bad when I lie down, but can be a little bothersome when I’m upright. I view this as a small price to pay.
This is really the beginning of the transplant process. The next big step will be tomorrow morning after I receive the fourth round of injections. I then get my blood tested to see if the process is working well enough for me to start the harvesting. After getting blood test number 5,000 out of the way, it is off to minor surgery (not sure who labeled this “minor” as they will be cutting my jugular vein to place the catheter just north of my heart.)
If all goes well and my blood comes back acceptable, I will get hooked up to the extraction machine for four to five hours. If I don’t have enough cells available, it is back for another injection and then home with the hope that the following day brings better results.
Wednesday, May 20, 2009
May 19, 2009 Starting to Wig Out
Over the years I have come to the conclusion that I am a little bit different than most people. (As they say on the Weekend Update skit on Saturday Night Live, “REALLY!?”) In the next couple of weeks, I will be undergoing a stem cell transplant that United Health Care believes is specialized enough to give in network coverage at the Mayo Clinic. Normal, non-transplant, procedures there are considered out of network.
Despite the significance of the transplant itself and the harvesting of the stem cells themselves, I have no concern what-so-ever about the procedure. I mean, I get more nervous going to the dentist than what I am about this. I wish I could say the same about the procedure that I have to undergo the morning that the harvesting starts. To be able to pull the stem cells from my blood they need to run the blood through a machine. To get it into the machine in a timely fashion, they need to turn me into the Bionic Man by putting a catheter in my chest.
The good doctors at the Mayo on Tuesday will be putting me into a “twilight state” and give me medicine to forget what is going to take place that morning. It bothers me that they have to give me something that is going to make me “forget.” What is it that they want me to forget? Can’t they just put me under and not give me the opportunity to forget something? I think I would prefer to just be stupid and not worry about forgetting whatever it is that they will do.
Per Wikipedia-- The catheter is placed in one of the large veins. A common site is superior vena cava or SVC. An SVC catheter is placed by puncturing the internal jugular vein in the neck (most often on the right side), and the catheter is then advanced downwards toward the chest. Alternatively an SVC catheter can be inserted via subclavian veins right behind the clavicle (the collar bone), often on the right.
Not sure about you, but this whole concept is a little disconcerting when they use terms like “puncturing” and “jugular” in the same sentence. As you can see in the picture above, this is not a pretty sight. I wonder what the over/under bet will be on the number of minutes that I actually sleep the night before. I have to deal with this for one week before I even go in the hospital. I’m going to be afraid to take a shower. What if I accidentally pull it out? I’ll bleed to death right next to my Pert bottle.
If I somehow manage to survive this inhumane treatment I will face up to four days of being hooked up to this dialysis type machine for five hours per day. During that time, they hope to gather eight to ten million stem cells. This is actually enough for two transplants. They tell me that they save the second half so that I will have them ready if and when I need a second transplant. What I really think is that they want extras in case they drop one of the bags and it explodes.
Then on June 2nd, I will meet with Dr. Mikhael in the morning and he will decide if all of the tests confirm that I am ready for transplant. If a bed is available, I will then check in and if it is early enough, receive chemo at 4PM. If I miss that time, the next treatment isn’t scheduled until 10PM. Hopefully, I can get the early one as you can’t just fall asleep during the treatment. Because of the harsh nature of this drug, I will have to keep ice chips in my mouth the whole time. This drug attacks the mouth, esophagus and everything else through the digestive system and the ice seems to help.
Then two days later I will receive my stem cells back and the race is on to get my immune system back. Two or three days after that, I will start to feel the full effects of the chemo. The rumor is that I will have food exiting my body in both directions much faster than God ever intended. To top that off, my hair should be falling into the receptacle just about as fast. Luckily, I have been practicing the losing hair part for the last 20 years and have gotten pretty good at it. Julia promises pictures on my blog for all those waiting to see me with a chrome dome.
If all goes well, I may know in a month of all of this transpiring if I am in remission. I have no doubt that I will be, but it will be nice to hear it from the doctor.
Despite the significance of the transplant itself and the harvesting of the stem cells themselves, I have no concern what-so-ever about the procedure. I mean, I get more nervous going to the dentist than what I am about this. I wish I could say the same about the procedure that I have to undergo the morning that the harvesting starts. To be able to pull the stem cells from my blood they need to run the blood through a machine. To get it into the machine in a timely fashion, they need to turn me into the Bionic Man by putting a catheter in my chest.
The good doctors at the Mayo on Tuesday will be putting me into a “twilight state” and give me medicine to forget what is going to take place that morning. It bothers me that they have to give me something that is going to make me “forget.” What is it that they want me to forget? Can’t they just put me under and not give me the opportunity to forget something? I think I would prefer to just be stupid and not worry about forgetting whatever it is that they will do.
Per Wikipedia-- The catheter is placed in one of the large veins. A common site is superior vena cava or SVC. An SVC catheter is placed by puncturing the internal jugular vein in the neck (most often on the right side), and the catheter is then advanced downwards toward the chest. Alternatively an SVC catheter can be inserted via subclavian veins right behind the clavicle (the collar bone), often on the right.
Not sure about you, but this whole concept is a little disconcerting when they use terms like “puncturing” and “jugular” in the same sentence. As you can see in the picture above, this is not a pretty sight. I wonder what the over/under bet will be on the number of minutes that I actually sleep the night before. I have to deal with this for one week before I even go in the hospital. I’m going to be afraid to take a shower. What if I accidentally pull it out? I’ll bleed to death right next to my Pert bottle.
If I somehow manage to survive this inhumane treatment I will face up to four days of being hooked up to this dialysis type machine for five hours per day. During that time, they hope to gather eight to ten million stem cells. This is actually enough for two transplants. They tell me that they save the second half so that I will have them ready if and when I need a second transplant. What I really think is that they want extras in case they drop one of the bags and it explodes.
Then on June 2nd, I will meet with Dr. Mikhael in the morning and he will decide if all of the tests confirm that I am ready for transplant. If a bed is available, I will then check in and if it is early enough, receive chemo at 4PM. If I miss that time, the next treatment isn’t scheduled until 10PM. Hopefully, I can get the early one as you can’t just fall asleep during the treatment. Because of the harsh nature of this drug, I will have to keep ice chips in my mouth the whole time. This drug attacks the mouth, esophagus and everything else through the digestive system and the ice seems to help.
Then two days later I will receive my stem cells back and the race is on to get my immune system back. Two or three days after that, I will start to feel the full effects of the chemo. The rumor is that I will have food exiting my body in both directions much faster than God ever intended. To top that off, my hair should be falling into the receptacle just about as fast. Luckily, I have been practicing the losing hair part for the last 20 years and have gotten pretty good at it. Julia promises pictures on my blog for all those waiting to see me with a chrome dome.
If all goes well, I may know in a month of all of this transpiring if I am in remission. I have no doubt that I will be, but it will be nice to hear it from the doctor.
Tuesday, May 19, 2009
May 18, 2009 From Dracula to Porn (Updated)
After several weeks of nothing to do but live a normal life, today was the first day of testing to confirm my readiness for the stem cell transplant. It was an early start for Julia and I because we needed to be in Scottsdale at 8:00 AM for the first test. As a result, we were up at 5:30 getting ready for the 60 minute drive.
Things were going well until Julia’s cell phone rang just a little before 7:00 with us about 15 miles from our house. It seems that Jason had forgotten his back pack in Julia’s car and desperately needed it for school. This says a lot about how much Jason studies over the weekend, but that is another story entirely. (sigh) We immediately turned around and eventually met Justin at Isagenix (my employer) so that he could drop it off in the school office where Jason could pick it up.
For those of you that know me well, being late is one of the things that drives me crazy. I used to break into a sweat when I realized that I would be late for work, even by a minute or two. Amazingly enough, Julia and I have been able to work through this problem of mine, despite the fact she is the polar opposite. If there is a chance that she can finish up putting her make-up on at the last possible minute and still get where she is going at an acceptable time, it is OK with her. In the background, while pacing, I have told her the how many minutes we have before we NEED to leave at least 15 times as she goes through this process. Yet, despite the differences in our approach to timeliness, there is little blood shed during these exchanges.
After the drop off, I drove like Burt Reynolds in Smokey and the Bandit. Somehow, there were no police on the entire trip and we actually walked into the Mayo at precisely 8:00 AM. Interestingly, after risking life and limb to get there, we had to wait 30 minutes to meet with the transplant coordinator. Not the beginning that I had hoped for. The meeting went about an hour and we were off to my blood test.
Since all of this started, I have had at least 25 blood tests. The most I have ever had taken was five viles of blood. As I walked into the little room and sat down, the technician was looking at a long printout of labels, much like an accordion. It looked a lot like the nerd from high school showing off his hoard of attached unused Trojans.
As she began to put the labels on viles, I began to gulp. She didn’t stop at five, or six or seven. She kept going until she reached sixteen. I almost passed out at the thought. I had obviously been assigned the bride of Dracula as my tech. Luckily, my blood was flowing well and I escaped without needing a transfusion.
The day continued with a chest x-ray and electrocardiogram that took less than 60 seconds. I wonder how much that baby cost? Yet, things were looking up as this gave us a little more time for lunch between tests/meetings.
As we walked into the restaurant, I noticed that I had a voice message on my cell phone. I had turn off the ringer while in the hospital and missed the actual call. As I listed to the message, I couldn’t help but feel that I was being “Punked.” (if you are familiar with the TV show.) The message stated that they made a mistake and need two more viles of blood. It appears that they needed two more to complete the golf course. Sixteen wasn’t enough, they needed eighteen.
After we returned, I was able to get right in and they hit the other arm for the remaining viles. It was then on to my echocardiogram. That only took 30 minutes so it was off to the last meeting of the day with a nurse from the Apheresis or harvest area. This is where things got interesting.
Not only was the RN cute, she wanted to go to a private room and all she seemed to want to talk about was sex. Certainly taken in the right context, this would be a great pretext for a porn movie. Of course, I could never be so lucky.
All the questions were about my previous conquests, or in my case, lack of conquests. No, I had never had sex with a man or a prostitute or someone with HIV or someone from Africa. It seems like everything I answered was “No.” In this particular case, “No’s” are a good thing. It certainly makes getting accepted into a program like this much easier if you are disease free.
Before I knew it, we were on our way home. Didn’t really do much all day but sit around, but was I beat. I actually fell asleep watching TV at about 8:30. Probably had the best night of sleep in a long time. Maybe bloodletting is what I need to do every day to sleep through the night.
Things were going well until Julia’s cell phone rang just a little before 7:00 with us about 15 miles from our house. It seems that Jason had forgotten his back pack in Julia’s car and desperately needed it for school. This says a lot about how much Jason studies over the weekend, but that is another story entirely. (sigh) We immediately turned around and eventually met Justin at Isagenix (my employer) so that he could drop it off in the school office where Jason could pick it up.
For those of you that know me well, being late is one of the things that drives me crazy. I used to break into a sweat when I realized that I would be late for work, even by a minute or two. Amazingly enough, Julia and I have been able to work through this problem of mine, despite the fact she is the polar opposite. If there is a chance that she can finish up putting her make-up on at the last possible minute and still get where she is going at an acceptable time, it is OK with her. In the background, while pacing, I have told her the how many minutes we have before we NEED to leave at least 15 times as she goes through this process. Yet, despite the differences in our approach to timeliness, there is little blood shed during these exchanges.
After the drop off, I drove like Burt Reynolds in Smokey and the Bandit. Somehow, there were no police on the entire trip and we actually walked into the Mayo at precisely 8:00 AM. Interestingly, after risking life and limb to get there, we had to wait 30 minutes to meet with the transplant coordinator. Not the beginning that I had hoped for. The meeting went about an hour and we were off to my blood test.
Since all of this started, I have had at least 25 blood tests. The most I have ever had taken was five viles of blood. As I walked into the little room and sat down, the technician was looking at a long printout of labels, much like an accordion. It looked a lot like the nerd from high school showing off his hoard of attached unused Trojans.
As she began to put the labels on viles, I began to gulp. She didn’t stop at five, or six or seven. She kept going until she reached sixteen. I almost passed out at the thought. I had obviously been assigned the bride of Dracula as my tech. Luckily, my blood was flowing well and I escaped without needing a transfusion.
The day continued with a chest x-ray and electrocardiogram that took less than 60 seconds. I wonder how much that baby cost? Yet, things were looking up as this gave us a little more time for lunch between tests/meetings.
As we walked into the restaurant, I noticed that I had a voice message on my cell phone. I had turn off the ringer while in the hospital and missed the actual call. As I listed to the message, I couldn’t help but feel that I was being “Punked.” (if you are familiar with the TV show.) The message stated that they made a mistake and need two more viles of blood. It appears that they needed two more to complete the golf course. Sixteen wasn’t enough, they needed eighteen.
After we returned, I was able to get right in and they hit the other arm for the remaining viles. It was then on to my echocardiogram. That only took 30 minutes so it was off to the last meeting of the day with a nurse from the Apheresis or harvest area. This is where things got interesting.
Not only was the RN cute, she wanted to go to a private room and all she seemed to want to talk about was sex. Certainly taken in the right context, this would be a great pretext for a porn movie. Of course, I could never be so lucky.
All the questions were about my previous conquests, or in my case, lack of conquests. No, I had never had sex with a man or a prostitute or someone with HIV or someone from Africa. It seems like everything I answered was “No.” In this particular case, “No’s” are a good thing. It certainly makes getting accepted into a program like this much easier if you are disease free.
Before I knew it, we were on our way home. Didn’t really do much all day but sit around, but was I beat. I actually fell asleep watching TV at about 8:30. Probably had the best night of sleep in a long time. Maybe bloodletting is what I need to do every day to sleep through the night.
Thursday, May 14, 2009
May 13, 2009 Making God Laugh
Life is never as we plan it. I probably have mentioned this somewhere in my blog, but as they say in the old joke, if you want to make God laugh, just tell him your plans for the future. As I sit here, late at night, once again I have made God laugh.
On Saturday morning, Julia and I had gotten up early to watch Justin play baseball in Scottsdale. We had the normal 45 minute drive turn into almost and hour and fifteen minutes due to the fact that the department of transportation always shuts down the main north-south highway going to Scottsdale on the weekends.
I thought that I would give my Terry (if you just started reading this, Terry has been my best friend for 30 years and is suffering from prostate cancer) a call before the game started to see if he had improved any since our call on Thursday. Although he had made some progress in the previous weeks, he had taken a downturn in the last few days and I was hoping that the antibiotics that they had given him on Thursday would have started to kick in.
Sadly, the opposite had taken place. He was feeling worse and I could tell in his voice that he was very concerned. By the end of the conversation, I knew that I would have to make one last trip to Columbus.
Although we were in the middle of nowhere, modern day technology came to the rescue. Julia did some initial look-ups for potential flights on her phone. She then called our good friend Laurie Liss who happens to be a flight attendant for Southwest. She was able to get me booked on an 8:20 flight for the next morning. Not the way that I wanted to spend Mother’s Day, but, as always, Julia was understanding of what needed to be done.
I once again tried the mask on the plane gig, but I quickly came to the conclusion that I was no longer the guy with a disease that had worked so well the last time I flew. I quickly became an oddball that was afraid of the Swine Flu. As a result, what must have been a former lineman for the Chicago Bears sat down in the middle seat next to me. For the next four hours, I not only looked like a goof, I had to scrunch up next to the window so that there was enough room to breathe.
After going through Chicago to get to Columbus, another good friend, Paul Collini, picked me up at the airport to take me to his house. Not only was I getting a free place to stay, but also a free BMW to drive around for the next few days. Paul even rode his bicycle to work the next day (15 miles) so I could use the car.
I went to Terry’s as soon as I dropped Paul off at his house and found him to be in a very non-Terry-like state. He had been told by the his nurse that visits twice a week that the last blood work came back showing that his liver function was failing and it was only performing at about one third of it’s normal capabilities.
Despite that, we were able to talk about the old times and everything else under the sun. I was still holding out hope that God had one more miracle in Him.
Monday became a busy day for me as I started off the morning at my old job with Abbott. This was the first time that I had been back since I was diagnosed so it was nice to prove to people that I was doing pretty good. It was also an opportunity to thank people for their prayers, cards and well-wishes over the last three months.
I then moved on to Terry’s for a while before I visited my mother in law, Fran, who was in Columbus for round two of her chemotherapy. Then on to Marysville to eat at Benny’s and spend some time with old friends from the boys’ baseball days with the 79’ers.
It was during that visit that things came crashing down. Terry called and filled me in on how his appointment with his doctor went that afternoon. Sadly, Terry was told that time was running out. With his quickly failing liver, he may only have days remaining.
The remainder of my visit was pretty subdued. What do you say to someone that only has days to live? I struggled for words. You feel so helpless when someone is in pain both physically and mentally and you can’t do a thing.
As the hours counted down, I dreaded walking out of the room for the last time. The last time I was in Columbus to see him, I still had a faint hope that he might survive. Saying goodbye was hard, but I still felt it might not be the last time. This time I knew it would be.
Thankfully, Terry was the strong one. I had trouble getting anything out without tears, but he was as stoic as he could be. Having to catch a plane, I finally gave him a hug and half ran out of the room as tears ran down my cheeks. His last words were, “I love you, John.”
Now I have to wait for the last call, the call I have feared would eventually come. Not sure I’ll be able to say much when I hear the words.
On Saturday morning, Julia and I had gotten up early to watch Justin play baseball in Scottsdale. We had the normal 45 minute drive turn into almost and hour and fifteen minutes due to the fact that the department of transportation always shuts down the main north-south highway going to Scottsdale on the weekends.
I thought that I would give my Terry (if you just started reading this, Terry has been my best friend for 30 years and is suffering from prostate cancer) a call before the game started to see if he had improved any since our call on Thursday. Although he had made some progress in the previous weeks, he had taken a downturn in the last few days and I was hoping that the antibiotics that they had given him on Thursday would have started to kick in.
Sadly, the opposite had taken place. He was feeling worse and I could tell in his voice that he was very concerned. By the end of the conversation, I knew that I would have to make one last trip to Columbus.
Although we were in the middle of nowhere, modern day technology came to the rescue. Julia did some initial look-ups for potential flights on her phone. She then called our good friend Laurie Liss who happens to be a flight attendant for Southwest. She was able to get me booked on an 8:20 flight for the next morning. Not the way that I wanted to spend Mother’s Day, but, as always, Julia was understanding of what needed to be done.
I once again tried the mask on the plane gig, but I quickly came to the conclusion that I was no longer the guy with a disease that had worked so well the last time I flew. I quickly became an oddball that was afraid of the Swine Flu. As a result, what must have been a former lineman for the Chicago Bears sat down in the middle seat next to me. For the next four hours, I not only looked like a goof, I had to scrunch up next to the window so that there was enough room to breathe.
After going through Chicago to get to Columbus, another good friend, Paul Collini, picked me up at the airport to take me to his house. Not only was I getting a free place to stay, but also a free BMW to drive around for the next few days. Paul even rode his bicycle to work the next day (15 miles) so I could use the car.
I went to Terry’s as soon as I dropped Paul off at his house and found him to be in a very non-Terry-like state. He had been told by the his nurse that visits twice a week that the last blood work came back showing that his liver function was failing and it was only performing at about one third of it’s normal capabilities.
Despite that, we were able to talk about the old times and everything else under the sun. I was still holding out hope that God had one more miracle in Him.
Monday became a busy day for me as I started off the morning at my old job with Abbott. This was the first time that I had been back since I was diagnosed so it was nice to prove to people that I was doing pretty good. It was also an opportunity to thank people for their prayers, cards and well-wishes over the last three months.
I then moved on to Terry’s for a while before I visited my mother in law, Fran, who was in Columbus for round two of her chemotherapy. Then on to Marysville to eat at Benny’s and spend some time with old friends from the boys’ baseball days with the 79’ers.
It was during that visit that things came crashing down. Terry called and filled me in on how his appointment with his doctor went that afternoon. Sadly, Terry was told that time was running out. With his quickly failing liver, he may only have days remaining.
The remainder of my visit was pretty subdued. What do you say to someone that only has days to live? I struggled for words. You feel so helpless when someone is in pain both physically and mentally and you can’t do a thing.
As the hours counted down, I dreaded walking out of the room for the last time. The last time I was in Columbus to see him, I still had a faint hope that he might survive. Saying goodbye was hard, but I still felt it might not be the last time. This time I knew it would be.
Thankfully, Terry was the strong one. I had trouble getting anything out without tears, but he was as stoic as he could be. Having to catch a plane, I finally gave him a hug and half ran out of the room as tears ran down my cheeks. His last words were, “I love you, John.”
Now I have to wait for the last call, the call I have feared would eventually come. Not sure I’ll be able to say much when I hear the words.
Thursday, May 7, 2009
May 6, 2009 Recluse
Last Saturday, Julia and I went out for dinner and saw a movie. Doesn’t sound like much, but it was the first time that the two of us did that in over three months. We went to a 5PM movie and then 7:30 dinner reservation. It wasn’t a great deal of work, but as soon as we got home, I stretched out on the couch and fell asleep. Good lord, I will soon be hitting the 4 PM early dinner specials that they have out here and in Florida for the retirement crowd.
That is, of course, when I actually wonder away from the house. Aside from going to the boys’ baseball games, I haven’t really wandered very far from home. I go to work and come home during the week. I sit in front of the TV on the weekends. I am becoming a recluse. If I don’t watch it, I won’t clip my fingernails like Howard Hughes did. I already have become a germaphobic like Hughes. Too bad I missed the money part of the equation.
I used to go out and buy clothes for Julia for no reason, but I can’t remember the last time I even went to a mall without the family with me. I don’t think it is a symptom of the disease, but I have gotten to the point where if it isn’t in Chandler, I’m not going (except for the 10,000 trips to Scottsdale for various doctor appointments.)
What really scares me is what I will be like after the transplant. I’ve already been referred to as “bubble boy.” When the doctor tells you that he doesn’t want you around people at work for three months, it makes you think. Too bad they don’t have a device that can check your blood like the insulin testers that diabetes patients utilize. I could check my blood every day to see if I was healthy enough to venture away from the house. Maybe Michael Jackson and I can hang out.
That is, of course, when I actually wonder away from the house. Aside from going to the boys’ baseball games, I haven’t really wandered very far from home. I go to work and come home during the week. I sit in front of the TV on the weekends. I am becoming a recluse. If I don’t watch it, I won’t clip my fingernails like Howard Hughes did. I already have become a germaphobic like Hughes. Too bad I missed the money part of the equation.
I used to go out and buy clothes for Julia for no reason, but I can’t remember the last time I even went to a mall without the family with me. I don’t think it is a symptom of the disease, but I have gotten to the point where if it isn’t in Chandler, I’m not going (except for the 10,000 trips to Scottsdale for various doctor appointments.)
What really scares me is what I will be like after the transplant. I’ve already been referred to as “bubble boy.” When the doctor tells you that he doesn’t want you around people at work for three months, it makes you think. Too bad they don’t have a device that can check your blood like the insulin testers that diabetes patients utilize. I could check my blood every day to see if I was healthy enough to venture away from the house. Maybe Michael Jackson and I can hang out.
Monday, May 4, 2009
May 2, 2009 Normalcy
For those that read this on a regular basis, you have probably noticed that I haven’t written anything in the last week. Please do not read anything into that. The real reason that I had nothing to say is because my life seems to have gotten a little boring, which in my case isn’t bad.
In the last week, I have had just one doctor visit, one blood test and absolutely nothing else. No chemotherapy, no radiation, no trips to the emergency room, no nothing. I have learned to like boring.
Over the last few weeks, I have noticed some soreness in my back that had pretty much gone away after a month of chemotherapy (different spot than before) . My guess is that it is nothing to worry about, but you never know. It could be cancer related or kidney related or it could just be that I’m old. I’m voting for the latter. I’ll know more on Tuesday when I see Dr. Obenchain. One of the nice things about being old is that you can blame a lot of things on it. For once, being old has value.
Speaking of being old, I think I am going to start collecting my pension from Abbott. I was always going to hold off on that until I really, really retired, but one of the options is to have Julia continue to receive it after I meet my maker. It reduces the monthly payout some, but she’s going to live another 50 years or so, so I think we’ll get the value out of it. Of course, by 2059, she may only be able to get a cup of coffee with it, but it is still a cup of coffee that she wouldn’t have gotten without it.
Hard to believe, but I go into the hospital one month from today, June 2. I’ve already put in my request for an HD TV and Direct TV, but that seems to have fallen on deaf ears. They do have WiFi so I will be locked into the internet when I’m not bent over a trash can puking my guts out. (In anticipation of that blessed event, I have been eating us out of house and home, putting back on all the weight that I lost.) This whole process has gone so quickly, it is amazing. It was just over three months ago when this little journey started, seems like three years in some ways.
I’m just hoping for the day I can use the “R” word , remission. I know it won’t last forever, but it will be nice to go to sleep at night knowing that there isn’t some disease inside me plotting to take over the kingdom. You guys will be the first to know. My guess is that I will call some kind of a news conference. I’ll probably do it like the high school athletes that are announcing which school they will be attending on scholarship. They have different schools’ hats on a table and then put on the hat of the school they will be attending. I’ll just use a happy face and a frowning face. What do you think?
In the last week, I have had just one doctor visit, one blood test and absolutely nothing else. No chemotherapy, no radiation, no trips to the emergency room, no nothing. I have learned to like boring.
Over the last few weeks, I have noticed some soreness in my back that had pretty much gone away after a month of chemotherapy (different spot than before) . My guess is that it is nothing to worry about, but you never know. It could be cancer related or kidney related or it could just be that I’m old. I’m voting for the latter. I’ll know more on Tuesday when I see Dr. Obenchain. One of the nice things about being old is that you can blame a lot of things on it. For once, being old has value.
Speaking of being old, I think I am going to start collecting my pension from Abbott. I was always going to hold off on that until I really, really retired, but one of the options is to have Julia continue to receive it after I meet my maker. It reduces the monthly payout some, but she’s going to live another 50 years or so, so I think we’ll get the value out of it. Of course, by 2059, she may only be able to get a cup of coffee with it, but it is still a cup of coffee that she wouldn’t have gotten without it.
Hard to believe, but I go into the hospital one month from today, June 2. I’ve already put in my request for an HD TV and Direct TV, but that seems to have fallen on deaf ears. They do have WiFi so I will be locked into the internet when I’m not bent over a trash can puking my guts out. (In anticipation of that blessed event, I have been eating us out of house and home, putting back on all the weight that I lost.) This whole process has gone so quickly, it is amazing. It was just over three months ago when this little journey started, seems like three years in some ways.
I’m just hoping for the day I can use the “R” word , remission. I know it won’t last forever, but it will be nice to go to sleep at night knowing that there isn’t some disease inside me plotting to take over the kingdom. You guys will be the first to know. My guess is that I will call some kind of a news conference. I’ll probably do it like the high school athletes that are announcing which school they will be attending on scholarship. They have different schools’ hats on a table and then put on the hat of the school they will be attending. I’ll just use a happy face and a frowning face. What do you think?
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