One thing that I have found during this journey is that I have completely lost track of time. This doesn’t mean that I can’t tell what hour it is. What it means is that I really have no idea what day or date it is. Without the structure of school or work, it is difficult to separate one day from the other. Today marks two weeks that I have been home. It seems like it has been longer, yet it seems like a much shorter time that I actually spent in the hospital. That hospital stay seemed more like two years.
Today is officially day +26, or 26 days since I received my transplant. The magic number for most is 30 days. After 30 days, most start feeling more normal. It is during that time that your blood gets more normal and you lose the other not so pleasant side effects. In some ways, I feel that I am there. My blood work came back great yesterday as both my platelets and white blood cells are back to the middle of the normal range. My red cells continue to improve and my hemoglobin will probably be back to normal within the next month.
In addition, they will be removing my port on Thursday, four days early. As much as I was nervous about having it put in, I’m just that excited about having it taken out. I know what is coming so, no big deal. It will be nice to take a shower and not tape up. It will also be nice to just stand in the shower and let the water run over what used to be my hair.
Speaking of which, I still have some hair left. We cut it off 10 days ago because it was everywhere. I still have fuzz but what is bothering me is the fact that some has continued to fall out. My problem is that it seems like the only hair that is falling out is what dark hair I had left. As a result, I just have white fuzz left. So much for looking young.
Tuesday, June 30, 2009
Wednesday, June 24, 2009
June 24, 2009 Does Everything Really Taste This Bad?
I’ve been home for just over a week now and about the only thing that consistently tastes good is ice cream. (I guess there could be worse things to like.) Of course, my choices of ice cream have been pretty pedestrian, you have to understand we are in Arizona (the non-ice cream capital of the world.) That was, of course, until there was a sharp knock on the front door. Then like manna from heaven, a package from Columbus, Ohio arrived.
During my last two trips to Columbus to see Terry, any free time I had was wrapped around food and more specifically trips to Graeter’s. Graeter’s started in Cincinnati in 1870 as a candy/chocolate/ice cream store. After a while, they branched out into other areas such as Dayton and Columbus. The day that Julia and I married, John, her younger brother and I drove to Cincinnati to get several quarts for our reception. Fran, my favorite mother-in-law, almost fell over when I handed her the bill for over $175 for ice cream. That still beings a smile to my face.
As Julia went to the door, she immediately thought that it was the belated Father’s Day gift that was to arrive that day. To her and eventually my amazement it was instead a gift from God. Six pints of Graeter’s ice cream had made it to Chandler, Arizona. I looked everywhere for a card but could find none.
This was driving me nuts. I certainly had to thank the gift giver for this wonderful present. My steal trap of a brain then sprung into action. Although a little chemo hung over, two names came to mind that I had mentioned Graeter’s to in the last week. I contacted both, but both were dumbfounded, it wasn’t from them.
That left me with just one name and it was the before mention brother in law, John and his wife Angie. They well know my addiction and finally at 7 PM on Tuesday we discovered a small note on the package that identified them as the benefactor. Too late to call, so it will be tonight that they will receive my thanks. All of a sudden, life is good.
This has been an interesting week in that I feel as though I am getting better, but it is very hard to gauge. My stomach has been less than cooperative and my meals have been occasional and small at best. When I post this update, it will be the first time I will have been on the internet in six days. My biggest exercise is walking from the bedroom to the couch to the bathroom. I’m afraid that this last leg of the trip has been the most common. Getting better, but slowly.
I’ve made two trips to the Mayo with continuing improvement in my blood levels. In meeting with the Nurse Practitioner, she said to be patient. If there is one thing that I am not, it’s patient. If I can’t beat all of the times, I wonder what’s wrong. I’ve beaten all of their projections so far and I don’t want to stop now. In her words, by day +30, I will really notice a difference. I am currently on day +20. I really don’t want to wait another 10 days to feel more like myself. We’ll see.
Just in case you missed the picture at the top of the blog, I am now hairless. It was driving me crazy finding hair everywhere, so I had Justin buzz it off. There is nothing like looking in the mirror and seeing no hair for the first time in your life. I really felt that I was looking at someone else. I’ve found that I am less self conscious about it than I thought I would be. In actuality, I have heard that chicks dig it. One more hurdle jumped.
During my last two trips to Columbus to see Terry, any free time I had was wrapped around food and more specifically trips to Graeter’s. Graeter’s started in Cincinnati in 1870 as a candy/chocolate/ice cream store. After a while, they branched out into other areas such as Dayton and Columbus. The day that Julia and I married, John, her younger brother and I drove to Cincinnati to get several quarts for our reception. Fran, my favorite mother-in-law, almost fell over when I handed her the bill for over $175 for ice cream. That still beings a smile to my face.
As Julia went to the door, she immediately thought that it was the belated Father’s Day gift that was to arrive that day. To her and eventually my amazement it was instead a gift from God. Six pints of Graeter’s ice cream had made it to Chandler, Arizona. I looked everywhere for a card but could find none.
This was driving me nuts. I certainly had to thank the gift giver for this wonderful present. My steal trap of a brain then sprung into action. Although a little chemo hung over, two names came to mind that I had mentioned Graeter’s to in the last week. I contacted both, but both were dumbfounded, it wasn’t from them.
That left me with just one name and it was the before mention brother in law, John and his wife Angie. They well know my addiction and finally at 7 PM on Tuesday we discovered a small note on the package that identified them as the benefactor. Too late to call, so it will be tonight that they will receive my thanks. All of a sudden, life is good.
This has been an interesting week in that I feel as though I am getting better, but it is very hard to gauge. My stomach has been less than cooperative and my meals have been occasional and small at best. When I post this update, it will be the first time I will have been on the internet in six days. My biggest exercise is walking from the bedroom to the couch to the bathroom. I’m afraid that this last leg of the trip has been the most common. Getting better, but slowly.
I’ve made two trips to the Mayo with continuing improvement in my blood levels. In meeting with the Nurse Practitioner, she said to be patient. If there is one thing that I am not, it’s patient. If I can’t beat all of the times, I wonder what’s wrong. I’ve beaten all of their projections so far and I don’t want to stop now. In her words, by day +30, I will really notice a difference. I am currently on day +20. I really don’t want to wait another 10 days to feel more like myself. We’ll see.
Just in case you missed the picture at the top of the blog, I am now hairless. It was driving me crazy finding hair everywhere, so I had Justin buzz it off. There is nothing like looking in the mirror and seeing no hair for the first time in your life. I really felt that I was looking at someone else. I’ve found that I am less self conscious about it than I thought I would be. In actuality, I have heard that chicks dig it. One more hurdle jumped.
Tuesday, June 23, 2009
Taking a Break
I've gotten so many notes and calls of concern that I felt obligated to go ahead and post until he's ready to get back into action. He's doing well, but progress is slow. He's not felt like picking up a computer, read or do much of anything else since coming home. He has continued his Mayo visits twice a week since coming home and medically everything seems to be just where he is expected to be right now.
He has continued to struggle with bouts of nausea, diarrhea and extreme fatigue. He has had no interest in food, which anyone who knows him well, knows that's a sure sign he's not up to speed yet.
He is sporting a new "tough guy" look and I have pictures, but I will wait to let him unveil the new 'do. He actually went to see each of the boys play a couple innings of baseball this week and the reactions to the look have been better than he'd feared. The boys and I think he's looking younger. His head isn't nearly as misshaped as his aunts led him to believe when he was young.
Thanks again for all of the kind notes and calls of concern. He'll be back at the keyboard soon with all of the usual wit and detail you've come to expect.
Thanks, Julia
He has continued to struggle with bouts of nausea, diarrhea and extreme fatigue. He has had no interest in food, which anyone who knows him well, knows that's a sure sign he's not up to speed yet.
He is sporting a new "tough guy" look and I have pictures, but I will wait to let him unveil the new 'do. He actually went to see each of the boys play a couple innings of baseball this week and the reactions to the look have been better than he'd feared. The boys and I think he's looking younger. His head isn't nearly as misshaped as his aunts led him to believe when he was young.
Thanks again for all of the kind notes and calls of concern. He'll be back at the keyboard soon with all of the usual wit and detail you've come to expect.
Thanks, Julia
Wednesday, June 17, 2009
June 17, 2009 Home Sweet Home
When Julia and I met with Megan Connelly, the Transplant Coordinator, before the harvesting began one of the things that she brought up was the fact that this is one of the few times that you enter the hospital feeling well and leave felling just the opposite. She wasn’t kidding.
The last few days have not been easy. Constant nausea and diarrhea and the battle with fever kept me more than interested. They had to wait several days before they could give me anything for the diarrhea because they needed to test it for bacteria. Everything had a three day test cycle. My first three days of consistent diarrhea, my first three days over 101.5 had to have blood tests run. They were all looking for some types of bacteria. That is the greatest fear with one of these transplants is that some type of bacterial takes over the body.
The good thing was that my blood counts were improving each day. The white cell count went from 0.2 on Sunday to 1.6 on Monday to 4.6 on Tuesday. Things were moving so fast that the doctor told me on Monday that unless I had a fever in the next 24 hours that I would be able to go home. I’m never had such pressure on me to stay healthy.
Those 24 hours were a little dicey as I fought nausea and the ability to take pills. Sounds stupid but I was having problems taking even the tiniest of pills. In between, the fever kept creeping up to the magic 100 degree mark. If either of those issues are not taken care of, I’m in for at least another day.
Luckily, I was able to get it done but not without one bout of vomiting. I was getting better, but a long way from being normal.
Even though virtually everyone that I had come in contact with at the Mayo had been fabulous, I could not wait to get out of the place. If I was going to feel like crap somewhere I’d rather be at home. After I got by the 8 PM vitals check, I felt pretty confident that I could handle the temperature requirement. For whatever reason I tended to feel my worst between 4 and 8 PM and typically had higher fevers then.
The last thing that I had to accomplish was to get my pills down. My first attempt at 8PM did not work and I began to panic that I was going to have to spend another day in the hospital. However, given another chance at 10PM, I was able to get the pills down. As long as something did not go wrong in the next 12 hours, I was home free.
Everything fell into place and at 10AM I received the official word that I was going to be discharged. I couldn’t stop thinking about getting outside the hospital and feel the heat on my face. I had felt cold almost from the minute I stepped into the place, but was always afraid to turn down the AC for fear that it would raise my temperature.
The first thing I did after getting in the house was flop on the couch. Boy, did that feel good. Now that I am home, I know that things will really move quickly. Tuesday night was not without its thrills as my brilliant plan to eat many very small meals to do a better job with my stomach failed miserably. Needless to say, another lost day of eating.
I then had to stretch out my pill taking until I finally went to bed around midnight. Boy did that feel good.
It’s now late in the afternoon on Wednesday and I feel as good as I have felt in days. I go back to the Hospital tomorrow for another blood test to see if things are continuing to respond. I feel fortunate in that I was originally scheduled to leave the hospital this Friday if all had gone well. Things continue to fall into place.
The last few days have not been easy. Constant nausea and diarrhea and the battle with fever kept me more than interested. They had to wait several days before they could give me anything for the diarrhea because they needed to test it for bacteria. Everything had a three day test cycle. My first three days of consistent diarrhea, my first three days over 101.5 had to have blood tests run. They were all looking for some types of bacteria. That is the greatest fear with one of these transplants is that some type of bacterial takes over the body.
The good thing was that my blood counts were improving each day. The white cell count went from 0.2 on Sunday to 1.6 on Monday to 4.6 on Tuesday. Things were moving so fast that the doctor told me on Monday that unless I had a fever in the next 24 hours that I would be able to go home. I’m never had such pressure on me to stay healthy.
Those 24 hours were a little dicey as I fought nausea and the ability to take pills. Sounds stupid but I was having problems taking even the tiniest of pills. In between, the fever kept creeping up to the magic 100 degree mark. If either of those issues are not taken care of, I’m in for at least another day.
Luckily, I was able to get it done but not without one bout of vomiting. I was getting better, but a long way from being normal.
Even though virtually everyone that I had come in contact with at the Mayo had been fabulous, I could not wait to get out of the place. If I was going to feel like crap somewhere I’d rather be at home. After I got by the 8 PM vitals check, I felt pretty confident that I could handle the temperature requirement. For whatever reason I tended to feel my worst between 4 and 8 PM and typically had higher fevers then.
The last thing that I had to accomplish was to get my pills down. My first attempt at 8PM did not work and I began to panic that I was going to have to spend another day in the hospital. However, given another chance at 10PM, I was able to get the pills down. As long as something did not go wrong in the next 12 hours, I was home free.
Everything fell into place and at 10AM I received the official word that I was going to be discharged. I couldn’t stop thinking about getting outside the hospital and feel the heat on my face. I had felt cold almost from the minute I stepped into the place, but was always afraid to turn down the AC for fear that it would raise my temperature.
The first thing I did after getting in the house was flop on the couch. Boy, did that feel good. Now that I am home, I know that things will really move quickly. Tuesday night was not without its thrills as my brilliant plan to eat many very small meals to do a better job with my stomach failed miserably. Needless to say, another lost day of eating.
I then had to stretch out my pill taking until I finally went to bed around midnight. Boy did that feel good.
It’s now late in the afternoon on Wednesday and I feel as good as I have felt in days. I go back to the Hospital tomorrow for another blood test to see if things are continuing to respond. I feel fortunate in that I was originally scheduled to leave the hospital this Friday if all had gone well. Things continue to fall into place.
Sunday, June 14, 2009
Day +10 - Back at the Keyboard
Seems like it has been forever since I sat down to update the blog. I have to thank my lovely wife, Julia, for stepping in for me on June 12. That day started off so normally, but went down the tubes in a hurry. Things did not get better over the next 48 hours.
When doctors tell you that there are certain things that are going to happen to you after a treatment, you usually filter out about half as just being for the oddball in the crowd. When they told me what the side effects for the chemo I was taking would be I just chuckled to myself, thinking, bring it on. I breezed though the side effects of the first two chemos, why would this be any different.
What I failed to take into account was that the goal of this chemo was to completely wipe me out. To be able to kill the cancer, there were going to be some innocent bystanders taken along with it. I was told that I could suffer any of the following: mouth sores, skin rashes, nausea, diarrhea, loss of appetite and hair loss. I felt that I would maybe touch a few of those, but certainly not all of them.
Let’s go down the line.
Mouth sores—This was the first thing that hit me. My tongue was the first to feel the discomfort. They aren’t sores as much as tender spots that have now going all the way down my throat. My tongue has swollen quite a bit. I now know what it’s like being Gene Simmons.
Skin rashes—this didn’t really hit me until yesterday. It is not what I had envisioned. I just added about 20 years on to my age in about 24 hours. I have unexplained bruises on my legs that are about and inch in diameter. I have reds spots virtually everywhere. It looks like I had a severe case of goosebumps and decided to shave my legs.
Nausea—This has been the least of the crew, but I have thrown up three times now just trying to take pills. Nothing major, but they are the kind of sessions that make your guts explode since there is nothing there to throw up.
Diarrhea—This has now taken over my world. If I can make it an hour without taking a trip to the bathroom, I pat myself on the back. You have to understand, I first have to get out of bed, unplug my IV pole from the wall, wrap up the cord, walk to the bathroom, urinate into the hand held urinal and then proceed to position yourself just above the little catcher (hat) they have sitting in the middle of the toilet. After completing the mission, I then wash up and finally put the plug back into the wall. Then it’s a call to the nurse to come to her thing. This is not an operation that you do at the last minute. Planning is extremely important. I didn’t do that one time, but we’ve talked enough about that.
Loss of appetite—I have survived on mandarin oranges and Sprite for the last three days. Even things that I love sound like liver. Yet through it all I stopped losing weight days ago. No one wants to believe me that I’m retaining water, but how can you eat virtually nothing for days and stay the same weight? This Mayo Diet plan I created isn’t working. I’m going to have to go on a diet after a get out.
Hair loss—Well, all of you guys out there that have been jealous of that unbelievable thick head of hair that I possess, today is your day. When I dried my hair this morning I noticed more hairs on the towel than fans at a Flock of Seagulls concert. The inevitable will happen in the next day or two when I get my first buzz job. Pray for me.
The last two days have been a battle with fever. It will get up to 103 degrees and they will make me put ice under my arm pits and at my crouch. They then hooked me up with a cooling blanket that helps lower my body temperature. In between I have uncontrollable shakes. These are more than just shivers but they come and go. I’ve been in the high 99’s this afternoon so I’m hoping that I might get down to normal tomorrow.
The big news of the day was my white blood count. It actually went from .20 to .60.This may not sound like much, but that is the first indication that the returned stem cells are doing their job. If I could do a back spring , this would be the perfect occasion. I received two units of blood yesterday, but that only contains red cells. I then received a unit of platelets today. Those two types of cells can be taken from others. White cells on the other had would become terribly confused and attacking my body as a foreign object.
I’ve been told that things should start getting better once my white count gets back to normal. This is one of those times that I look forward to the 4 AM wake up call when they take my blood. I’ll know by 7 AM if things are continuing to improve. My fingers are crossed.
When doctors tell you that there are certain things that are going to happen to you after a treatment, you usually filter out about half as just being for the oddball in the crowd. When they told me what the side effects for the chemo I was taking would be I just chuckled to myself, thinking, bring it on. I breezed though the side effects of the first two chemos, why would this be any different.
What I failed to take into account was that the goal of this chemo was to completely wipe me out. To be able to kill the cancer, there were going to be some innocent bystanders taken along with it. I was told that I could suffer any of the following: mouth sores, skin rashes, nausea, diarrhea, loss of appetite and hair loss. I felt that I would maybe touch a few of those, but certainly not all of them.
Let’s go down the line.
Mouth sores—This was the first thing that hit me. My tongue was the first to feel the discomfort. They aren’t sores as much as tender spots that have now going all the way down my throat. My tongue has swollen quite a bit. I now know what it’s like being Gene Simmons.
Skin rashes—this didn’t really hit me until yesterday. It is not what I had envisioned. I just added about 20 years on to my age in about 24 hours. I have unexplained bruises on my legs that are about and inch in diameter. I have reds spots virtually everywhere. It looks like I had a severe case of goosebumps and decided to shave my legs.
Nausea—This has been the least of the crew, but I have thrown up three times now just trying to take pills. Nothing major, but they are the kind of sessions that make your guts explode since there is nothing there to throw up.
Diarrhea—This has now taken over my world. If I can make it an hour without taking a trip to the bathroom, I pat myself on the back. You have to understand, I first have to get out of bed, unplug my IV pole from the wall, wrap up the cord, walk to the bathroom, urinate into the hand held urinal and then proceed to position yourself just above the little catcher (hat) they have sitting in the middle of the toilet. After completing the mission, I then wash up and finally put the plug back into the wall. Then it’s a call to the nurse to come to her thing. This is not an operation that you do at the last minute. Planning is extremely important. I didn’t do that one time, but we’ve talked enough about that.
Loss of appetite—I have survived on mandarin oranges and Sprite for the last three days. Even things that I love sound like liver. Yet through it all I stopped losing weight days ago. No one wants to believe me that I’m retaining water, but how can you eat virtually nothing for days and stay the same weight? This Mayo Diet plan I created isn’t working. I’m going to have to go on a diet after a get out.
Hair loss—Well, all of you guys out there that have been jealous of that unbelievable thick head of hair that I possess, today is your day. When I dried my hair this morning I noticed more hairs on the towel than fans at a Flock of Seagulls concert. The inevitable will happen in the next day or two when I get my first buzz job. Pray for me.
The last two days have been a battle with fever. It will get up to 103 degrees and they will make me put ice under my arm pits and at my crouch. They then hooked me up with a cooling blanket that helps lower my body temperature. In between I have uncontrollable shakes. These are more than just shivers but they come and go. I’ve been in the high 99’s this afternoon so I’m hoping that I might get down to normal tomorrow.
The big news of the day was my white blood count. It actually went from .20 to .60.This may not sound like much, but that is the first indication that the returned stem cells are doing their job. If I could do a back spring , this would be the perfect occasion. I received two units of blood yesterday, but that only contains red cells. I then received a unit of platelets today. Those two types of cells can be taken from others. White cells on the other had would become terribly confused and attacking my body as a foreign object.
I’ve been told that things should start getting better once my white count gets back to normal. This is one of those times that I look forward to the 4 AM wake up call when they take my blood. I’ll know by 7 AM if things are continuing to improve. My fingers are crossed.
Friday, June 12, 2009
Day +8 - Not So Boring Anymore
All of the hype they’d warned us about is hitting. I (Julia) am writing so the avid fans won’t worry, but I won’t pretend to have the gift of blog that John has.
Yesterday (Day +7) it was apparent his energy was waning but we mixed up his routine as well. Justin deserved a little father-son time so he took the early shift. We passed off the visitation baton and I stuck around until bedtime. John’s motions had slowed somewhat and he was having trouble getting comfortable…too hot, then too cold. His power-walking around the nurse’s station had turned into a necessary dragging of the IV pole for 30 minutes. My phases of how he’s feeling are “chipper John,” “cranky John” and “mellow man.” He’d definitely hit mellow today. No cantankerous spunk, I blew it, I should have asked for a swell piece of jewelry or something, he would probably have said “yes” without thinking. Dr. Mikhael still felt all was going as planned which is good, but obviously the effects of no immune system were here.
This morning (Day +8) he was still running a slight fever and feeling worse. His tongue is swollen and sore. The rawness has also hit his throat and the headache continues. He has no energy to read or even really watch TV today. We left him rest until early afternoon and then the “decent of the clowns” hit Mayo’s 4th Floor. This was Jason’s first visit as he’d been fighting a cold since the day John was admitted. He collected his mask, proceeded to sanitize and enter room 61. Now the boys have been apart for nearly two weeks so the giddy energy and sibling rivalry is still sparking between them. Justin decides he can’t miss out the fun and since he’d complained that the sunlight was giving him a headache on the drive up he might be contagious of something as well and needed to enter with a mask too. Upon entering the room they immediately spied the stack of latex glove boxes. The masked avengers were giggling over the fun of flicking the rubber gloves and hand dancing to the sounds of Rick James' "SuperFreak" on XM when in walks John’s most adorable teenage-looking nurse and silence hit the room. Suddenly they decided visiting ol’ Dad wasn’t such a bad thing. Oh, what I would have given to have a video running on this take of “Dumb and Dumber Go to The Mayo”.
The fever continued to climb but Team Mayo sprang into action. At 3:30 his temp was 99.0. By 4:10 it had jumped to 101.5 and rising. This wasn’t a surprise. Through all of the pre-transplant education, we knew to expect this as much as John adamantly insisted it wouldn’t happen to him. Nurse Emily was right there keeping tabs, posting orders for x-rays, labs, medication and providing ice packs and cool towels. It’s now rest and wait to see what might be causing this little blip. This is why we pay the big bucks to stay at Hotel Mayo. I’m convinced it’s just John’s way of getting his money’s worth.
I’m hoping the antibiotics and rest will allow me to turn the keyboard back over to “the man” tomorrow. -- Julia
Yesterday (Day +7) it was apparent his energy was waning but we mixed up his routine as well. Justin deserved a little father-son time so he took the early shift. We passed off the visitation baton and I stuck around until bedtime. John’s motions had slowed somewhat and he was having trouble getting comfortable…too hot, then too cold. His power-walking around the nurse’s station had turned into a necessary dragging of the IV pole for 30 minutes. My phases of how he’s feeling are “chipper John,” “cranky John” and “mellow man.” He’d definitely hit mellow today. No cantankerous spunk, I blew it, I should have asked for a swell piece of jewelry or something, he would probably have said “yes” without thinking. Dr. Mikhael still felt all was going as planned which is good, but obviously the effects of no immune system were here.
This morning (Day +8) he was still running a slight fever and feeling worse. His tongue is swollen and sore. The rawness has also hit his throat and the headache continues. He has no energy to read or even really watch TV today. We left him rest until early afternoon and then the “decent of the clowns” hit Mayo’s 4th Floor. This was Jason’s first visit as he’d been fighting a cold since the day John was admitted. He collected his mask, proceeded to sanitize and enter room 61. Now the boys have been apart for nearly two weeks so the giddy energy and sibling rivalry is still sparking between them. Justin decides he can’t miss out the fun and since he’d complained that the sunlight was giving him a headache on the drive up he might be contagious of something as well and needed to enter with a mask too. Upon entering the room they immediately spied the stack of latex glove boxes. The masked avengers were giggling over the fun of flicking the rubber gloves and hand dancing to the sounds of Rick James' "SuperFreak" on XM when in walks John’s most adorable teenage-looking nurse and silence hit the room. Suddenly they decided visiting ol’ Dad wasn’t such a bad thing. Oh, what I would have given to have a video running on this take of “Dumb and Dumber Go to The Mayo”.
The fever continued to climb but Team Mayo sprang into action. At 3:30 his temp was 99.0. By 4:10 it had jumped to 101.5 and rising. This wasn’t a surprise. Through all of the pre-transplant education, we knew to expect this as much as John adamantly insisted it wouldn’t happen to him. Nurse Emily was right there keeping tabs, posting orders for x-rays, labs, medication and providing ice packs and cool towels. It’s now rest and wait to see what might be causing this little blip. This is why we pay the big bucks to stay at Hotel Mayo. I’m convinced it’s just John’s way of getting his money’s worth.
I’m hoping the antibiotics and rest will allow me to turn the keyboard back over to “the man” tomorrow. -- Julia
Thursday, June 11, 2009
June 10, 2009 Boooring, Boooring
Boring is the only way that I can describe what I am experiencing right now. The only excitement that I had all day was when diarrhea came back for a visit. My mouth is hanging in there, some discomfort, but nothing I can’t handle. I started receiving the same shot that I received before the harvest operation. I may or may not experience any discomfort this time as the dosage is only half of what I received earlier. The hope is that this will kick start the white cell production.
I feel pretty good, but I am sleeping later and later everyday. Not sure if that is because I am more run down or because it shortens the day.
Justin returns tonight from Columbus, so it will be nice to have another visitor. Jason is still nursing a cold, so I haven’t seen him since I checked it. Hopefully, he will get over that in the next couple of days. Not sure why, but I have lost any desire to read. I bought 5 books before I came in and I just can’t get excited about starting any of them. Can’t blame it on the chemo, that left my system days ago.
Today was day +6. The original plan was to leave on day +15, so as long as I stay healthy, I’ll get out of here in less than 10 days. If my white cells decide to come to work a little earlier, I might be able to shave a day or two off that. Here’s hoping.
I feel pretty good, but I am sleeping later and later everyday. Not sure if that is because I am more run down or because it shortens the day.
Justin returns tonight from Columbus, so it will be nice to have another visitor. Jason is still nursing a cold, so I haven’t seen him since I checked it. Hopefully, he will get over that in the next couple of days. Not sure why, but I have lost any desire to read. I bought 5 books before I came in and I just can’t get excited about starting any of them. Can’t blame it on the chemo, that left my system days ago.
Today was day +6. The original plan was to leave on day +15, so as long as I stay healthy, I’ll get out of here in less than 10 days. If my white cells decide to come to work a little earlier, I might be able to shave a day or two off that. Here’s hoping.
Wednesday, June 10, 2009
June 9, 2009 Skyline Chili
Day +5 held no surprises. I do my 75 laps around the pod, I gargle 10 times, I have my lungs checked out 8 times, I have my temperature, heart rate and blood pressure checked 6 times and I get my blood tested once. The only thing of significance is the last. That gets done at 4AM every morning and I get the results as soon as I get up.
If you had a chart that would show what was supposed to happen, that would be a predictor of what is happening for me. As Dr. Mikhael stated, “I’m boring.” Now, he said that in a nice way. Things are going just as planned and he couldn’t expect anything better. In my world, boring continues to be good.
My white cells are almost non-existent. Since I still don’t have the ability to make new ones, the old ones are just meeting their normal life expectancy. I’m down to 1.0 verses the normal 4.2-10.2. That is a drop of 60% from yesterday. I would expect the same drop tomorrow. I am just about defenseless at this point. Should I get a fever (which is almost expected in the next couple of days) I will start getting antibiotics, have additional blood tests and get a chest x-ray, just to make sure nothing is going on. My mouth is starting to bark at me a little bit, but hopefully it won’t get too bad. I’ve lost just under six pounds so far, but you wouldn’t guess it from my still chubby self. My brilliant plan of pigging out before I checked in seems to be working so far.
About the only excitement of the day (aside, of course, when Julia made it up!) is when Megan (transplant coordinator) stopped by. The three of us entered into our normal discussion of food and we had to indoctrinate her concerning Cincinnati Chili. Those of you from Arizona have already suffered through this presentation. We feel it is our life mission to convert the world to Cincinnati Chili. Skyline is one of the few things that actually sounds good at this point.
We then moved on to what she does for a living. I’m sure I am going to butcher this, but her main job is to hook recipients up with donors of either bone marrow or stem cells. She typically has 20 patients that she is working with. I was easier than some, because I could use my own cells. For a number of diseases this isn’t as readily available.
As a result, she may have to search the world for donors. Later today, she was to receive cells from somewhere on the other side of the world. This entire process is amazing to me. I have always been a designated organ donor (not sure I am still eligible.) That seems pretty easy to me. I die, they can take anything they want to help someone else. If there ever was a no brainer, that is it.
This is different. Here is somebody in another country, say Germany and he decides that he is willing to have cells harvested to potentially save someone he has never met. Giving up your organs after you are dead is one thing, but we are talking a weeklong process that you have to agree to in making this commitment. One that has some discomfort associated with it.
I’m sure there are thousands and thousands of people out there that are dying because they can’t find a donor. My guess is that most of us never even think about stem cell or bone marrow donation. Maybe we should.
If you had a chart that would show what was supposed to happen, that would be a predictor of what is happening for me. As Dr. Mikhael stated, “I’m boring.” Now, he said that in a nice way. Things are going just as planned and he couldn’t expect anything better. In my world, boring continues to be good.
My white cells are almost non-existent. Since I still don’t have the ability to make new ones, the old ones are just meeting their normal life expectancy. I’m down to 1.0 verses the normal 4.2-10.2. That is a drop of 60% from yesterday. I would expect the same drop tomorrow. I am just about defenseless at this point. Should I get a fever (which is almost expected in the next couple of days) I will start getting antibiotics, have additional blood tests and get a chest x-ray, just to make sure nothing is going on. My mouth is starting to bark at me a little bit, but hopefully it won’t get too bad. I’ve lost just under six pounds so far, but you wouldn’t guess it from my still chubby self. My brilliant plan of pigging out before I checked in seems to be working so far.
About the only excitement of the day (aside, of course, when Julia made it up!) is when Megan (transplant coordinator) stopped by. The three of us entered into our normal discussion of food and we had to indoctrinate her concerning Cincinnati Chili. Those of you from Arizona have already suffered through this presentation. We feel it is our life mission to convert the world to Cincinnati Chili. Skyline is one of the few things that actually sounds good at this point.
We then moved on to what she does for a living. I’m sure I am going to butcher this, but her main job is to hook recipients up with donors of either bone marrow or stem cells. She typically has 20 patients that she is working with. I was easier than some, because I could use my own cells. For a number of diseases this isn’t as readily available.
As a result, she may have to search the world for donors. Later today, she was to receive cells from somewhere on the other side of the world. This entire process is amazing to me. I have always been a designated organ donor (not sure I am still eligible.) That seems pretty easy to me. I die, they can take anything they want to help someone else. If there ever was a no brainer, that is it.
This is different. Here is somebody in another country, say Germany and he decides that he is willing to have cells harvested to potentially save someone he has never met. Giving up your organs after you are dead is one thing, but we are talking a weeklong process that you have to agree to in making this commitment. One that has some discomfort associated with it.
I’m sure there are thousands and thousands of people out there that are dying because they can’t find a donor. My guess is that most of us never even think about stem cell or bone marrow donation. Maybe we should.
Tuesday, June 9, 2009
Offering Your Two Cents
Many of you have emailed with questions about posting comments. The easiest way to do it if you don't have an AIM or Google account is to select one of the bottom profiles in the listing (Anonymous or Name/URL). Blogspot's interface isn't the most intuitive, but the easiest way to do give John a rough time or wish him well is to click the "Comments" link below the posting. Type your comment in the "Post Your Comment" Box. Select in the drop-down "Comment as:" Name/URL. Type in your name or alias and you can leave the URL blank, if you want. Click Preview to see it before it goes live or just Post. Thanks for all of the kind notes and calls! Julia
June 8, 2009 Moving Day
You know the internet means too much to you when you are willing to move from the Presidential Suite to the Motel 8 next to the lobby. After struggling with access for six days, I finally took the plunge and moved to another pod. This one is smaller and in more of a square. It certainly makes taking my laps easier as the previous pod was more of a key hole.
Labs still look good. All the counts continue to drop, but I still have several days before we even have to talk about receiving blood. My creatinine was up slightly to 2.5, but that is what it was when I came in. Dr. Mikhael stopped in with his entourage to check on my well being. I felt like I was on Grey’s Anatomy with all of the onlookers checking me out. He is well pleased with where we are and expects things to continue to go smoothly.
Not much else to report. The days seem to be 48 hours long and I tend to go to sleep early just to get me to the next day. In my case, boring is good, but we tend to tire of even the good things in life.
Labs still look good. All the counts continue to drop, but I still have several days before we even have to talk about receiving blood. My creatinine was up slightly to 2.5, but that is what it was when I came in. Dr. Mikhael stopped in with his entourage to check on my well being. I felt like I was on Grey’s Anatomy with all of the onlookers checking me out. He is well pleased with where we are and expects things to continue to go smoothly.
Not much else to report. The days seem to be 48 hours long and I tend to go to sleep early just to get me to the next day. In my case, boring is good, but we tend to tire of even the good things in life.
Monday, June 8, 2009
June 7, 2009 The Simple Things in Life
You know that your life is running in slow motion when the most exciting thing that you do in a 24 hour period is go to the bathroom. Those of you familiar with my “$5,000 Enema” are well aware of my fear of constipation. Over the last few rounds of chemo, I was able to stay away from any difficulties because I was also doing radiation that tended to loosen things up and I stayed away from pain killers.
After being in the hospital since Tuesday and having no luck, I panicked on Sunday and asked for a little help. A laxative was provided, but nothing seemed to be happening. As late afternoon approach, I asked for another. This might have been my undoing.
Shortly after starting one of my three daily 10 minute walks around the corridor, I realized that my prayers might be answered. Minutes later, I was walking on top of the world. My biggest fear had been taken away. However, two hours later, my insides started grabbing my attention again.
This time, it seemed to me that my little vacation here had taken a side trip to Mexico and I had sampled some of the water. So within two hours, I go from being in the middle of a drought to finding myself in the middle of a flood. Hopefully, this second trip was a one hit wonder, but from the noise that my insides are making now, I’m not going to bet the house on it.
My blood work continues to look pretty good. The white count continues to drop and is now down to 2.5 (standard 4.2-10.2). This is expected as there is nothing available to make any new ones. The old ones are dying off as my body waits for the stem cells to do their thing. They should now be in my bone marrow giving some thought to going back to work.
Luckily, my red cells and platelets are holding their own. Should this continue, I will avoid getting any blood products. This is a day to day battle, just waiting for my 4AM blood results to come in.
As you know, yesterday I lost my good friend Terry Quinn . to this awful disease, cancer. There are so many kinds of cancer that they are hardly countable, but they take us all down a road that we pray to God never happens. We give it our best and in the end we sometimes come out the winner. However, when cancer wins, it hurts us all, not just the one receiving the treatment.
We work our entire live to gain a certain level of dignity that cancer gradually takes away. In the end, it makes us long for the end. This is not the way that we should end our lives. We should be drinking an ice tea on some beach in an unpronounceable country. Instead, we find ourselves hooked up to more machines than we can count.
I pray that through the research efforts of so many and the donations of many others that we can get to a point that more of us are sipping ice tea when God comes calling.
After being in the hospital since Tuesday and having no luck, I panicked on Sunday and asked for a little help. A laxative was provided, but nothing seemed to be happening. As late afternoon approach, I asked for another. This might have been my undoing.
Shortly after starting one of my three daily 10 minute walks around the corridor, I realized that my prayers might be answered. Minutes later, I was walking on top of the world. My biggest fear had been taken away. However, two hours later, my insides started grabbing my attention again.
This time, it seemed to me that my little vacation here had taken a side trip to Mexico and I had sampled some of the water. So within two hours, I go from being in the middle of a drought to finding myself in the middle of a flood. Hopefully, this second trip was a one hit wonder, but from the noise that my insides are making now, I’m not going to bet the house on it.
My blood work continues to look pretty good. The white count continues to drop and is now down to 2.5 (standard 4.2-10.2). This is expected as there is nothing available to make any new ones. The old ones are dying off as my body waits for the stem cells to do their thing. They should now be in my bone marrow giving some thought to going back to work.
Luckily, my red cells and platelets are holding their own. Should this continue, I will avoid getting any blood products. This is a day to day battle, just waiting for my 4AM blood results to come in.
As you know, yesterday I lost my good friend Terry Quinn . to this awful disease, cancer. There are so many kinds of cancer that they are hardly countable, but they take us all down a road that we pray to God never happens. We give it our best and in the end we sometimes come out the winner. However, when cancer wins, it hurts us all, not just the one receiving the treatment.
We work our entire live to gain a certain level of dignity that cancer gradually takes away. In the end, it makes us long for the end. This is not the way that we should end our lives. We should be drinking an ice tea on some beach in an unpronounceable country. Instead, we find ourselves hooked up to more machines than we can count.
I pray that through the research efforts of so many and the donations of many others that we can get to a point that more of us are sipping ice tea when God comes calling.
Saturday, June 6, 2009
June 6, 2009 Terry Jay Quinn
I lost my best friend today.
When Terry and I met 31 years ago, we really didn’t have much in common other than the fact that we were both single and worked at the same place. Yet, we somehow clicked.
Terry always had a plan. I was always Robin to his Batman. I was ok with that because whatever we did typically ended up as an enjoyable experience. Terry had a plan to meet women. Terry had a plan to fix up this car or that car or to fix up this house and sell it. Terry had a plan to get rich. No matter what, he was always fixed on the prize at the end.
Terry found a lot of those prizes along the way having been married to his loving wife, Linda for over 25 years. Their daughter Britney has always been a joy in his life. Terry worked hard and was able to enjoy many of the finer things in life. Terry was funny in that he liked expensive clothes and cars, but acted like a normal Joe. I always got a kick out of seeing the next outrageous clothes he would wear.
But more than anything else, deep down in side, Terry loved those around him. He really was a simple guy, with simple pleasures.
I’m never going to forget my friend. He made our lives better.
When Terry and I met 31 years ago, we really didn’t have much in common other than the fact that we were both single and worked at the same place. Yet, we somehow clicked.
Terry always had a plan. I was always Robin to his Batman. I was ok with that because whatever we did typically ended up as an enjoyable experience. Terry had a plan to meet women. Terry had a plan to fix up this car or that car or to fix up this house and sell it. Terry had a plan to get rich. No matter what, he was always fixed on the prize at the end.
Terry found a lot of those prizes along the way having been married to his loving wife, Linda for over 25 years. Their daughter Britney has always been a joy in his life. Terry worked hard and was able to enjoy many of the finer things in life. Terry was funny in that he liked expensive clothes and cars, but acted like a normal Joe. I always got a kick out of seeing the next outrageous clothes he would wear.
But more than anything else, deep down in side, Terry loved those around him. He really was a simple guy, with simple pleasures.
I’m never going to forget my friend. He made our lives better.
June 5, 2009 Not Much Action
Very slow day for me. I can’t believe that I still have two weeks to go. That isn’t my goal, but that is what they tell me. Food and I could not make a connection today. I tried a few bites of breakfast and that was enough to keep me until I ate about half of my dinner. I wouldn’t say I was nauseous, but I wouldn’t say that the thought of food excited me, either.
Along with this horrendous taste in my mouth, bacon doesn’t even taste good and I don’t know how bacon can possibly taste bad. On top of that, I have a headache that comes and goes. They can’t give me anything for it but Oxicodone. It’s a headache, not a fractured skull, so I’m staying away from the meds.
I get my first new birthday present as Julia brings me an XM sound system that hooks into the portable unit in my car. I think I can deal with this two birthday thing.
Seems like a day of visitors as several people stop in to explain their role in this entire ordeal. My most common visitor is Megan, my transplant coordinator. Interestingly enough we now share a birthday since I have added one. The nice thing about talking to Megan is that it isn’t just hospital stuff. Julia and I now have some ideas for dinner places when I escape from this place.
It’s still just day +1. Only 14 left.
Along with this horrendous taste in my mouth, bacon doesn’t even taste good and I don’t know how bacon can possibly taste bad. On top of that, I have a headache that comes and goes. They can’t give me anything for it but Oxicodone. It’s a headache, not a fractured skull, so I’m staying away from the meds.
I get my first new birthday present as Julia brings me an XM sound system that hooks into the portable unit in my car. I think I can deal with this two birthday thing.
Seems like a day of visitors as several people stop in to explain their role in this entire ordeal. My most common visitor is Megan, my transplant coordinator. Interestingly enough we now share a birthday since I have added one. The nice thing about talking to Megan is that it isn’t just hospital stuff. Julia and I now have some ideas for dinner places when I escape from this place.
It’s still just day +1. Only 14 left.
Friday, June 5, 2009
June 4, 2009 Day 0 (A New Birthday)
Since I am tentatively going to use today as a second birthday to celebrate during the year (a ploy to get more presents and chocolate cake-Lisa where are you?), I thought I would give you a precise rundown of the day. Hopefully I will be a little more coherent than I was on my original birthday.
12:00AM--The day started off like all in the hospital with a midnight vital signs run by Meredith. She is sweet as can be about it, but it’s still midnight. It only takes a couple of minutes, but I struggle to get back to sleep. All I can guess is that it is the excitement of opening presents later in the day.
3:30AM—I finally get back to sleep, but I wake up just in time to see Meredith coming in to gather the normal vital signs, weigh me and take some blood. My weight has stayed steady from the previous weigh-in. I feel like I am on the Biggest Loser with the frequency of weigh-ins. This all takes about 30 minutes and I’m back to bed at about 4:00.
7:45AM—I again have slept a little, but finally gave up and turned on Sports Center. The shift has changed and my new nurse, Dawn has taken over. Vital signs time again and I have her tape me up with Saran Wrap so that I can take a shower. Other than getting the floor soaked due to my ineptness with the movable shower head, I accomplish my mission. I then shave, brush my teeth and put in my contacts. I really noticed that my hands were shaking when I put in the contacts.
8:25AM—It’s time for my long walk on the beach (OK it’s just the hallway, but a guy can dream can’t he?) After about 10 laps I see that the doctor is doing his morning rounds and I head back to the room. He checks my heart and lungs and everything is working just fine. I asked about my blood work and he says that the cell counts look pretty good at this point. I’m hoping to stay away from a transfusion, so I will be constantly asking this question.
9:00AM—I call the hospital help desk to try to get someone to improve the internet signal. It is absolutely worthless at this point. I can do without a number of things in my life, but the internet isn’t one of them. So I hope for another small miracle. He says he will try to get someone to look into it. Make that a large miracle.
9:30AM—Dawn comes in to start to get things ready for the transplant. It will only take about an hour or so, but I will be hooked up to a heart monitor and be given oxygen. Don’t know what all of the hubbub is about, they are just giving me my own cells back. I’m going to take it for granted that they know what they are doing.
11:30AM—Just like clockwork the technician from the outside lab arrives with my stem cells. Over the next half hour he begins the set-up of the thawing procedure and tells us his life story. I’m not sure which was more interesting. I get hooked up to the heart monitor and start receiving oxygen just before noon.
12:00PM—It is amazing how anticlimactic the transplant was. After getting hooked up with some Tylenol, steroids and an injection of Benadryl, I had more trouble staying awake than anything. Each of the four bags of cells took between five and ten minutes to be completed. By 12:30 it was over.
2:30PM—I’m done trying to stay awake and take an hour nap. Feeling much better, I do my second of three ten minute walks around the wing. I’m told that I smell like a can of creamed corn as the agent used to protect the cells during their freezing process oozes from my pores. Not much I can do about it, so everybody will just have to live with it for the next couple of days.
5:00PM—Dinner shows up and it is highlighted by a huge piece of chocolate cake. Needless to say, the highlight of my day if you don’t count the possibility of going into remission. At least I know for sure about the chocolate cake. Eating at five o’clock makes me feel like a senior citizen. Sad think is, I was looking forward to it.
5:30PM—Dawn turns down the IV drip from 250 ml per hour to the normal 100 ml. I can now go longer than an hour and a half without making a trip to the bathroom and collecting my urine. It is amazing what excites you on day three of seventeen in the hospital.
6:00PM—The NBA Finals start and begins an evening of boring TV. I try reading “Moneyball”, but even that doesn’t get me too thrilled. Not only that but the only presents I got for my new birthday were bottles of water that Julia picked up. Oh well, maybe this second birthday thing will catch on next year.
10:00PM—I finally give in to the boredom of the day and attempt to go to sleep. As usual, it took me a while to doze off and before I knew it, It was time for the midnight vital sign wake-up. You think on your birthday they would let you sleep through the night. Sigh….
12:00AM--The day started off like all in the hospital with a midnight vital signs run by Meredith. She is sweet as can be about it, but it’s still midnight. It only takes a couple of minutes, but I struggle to get back to sleep. All I can guess is that it is the excitement of opening presents later in the day.
3:30AM—I finally get back to sleep, but I wake up just in time to see Meredith coming in to gather the normal vital signs, weigh me and take some blood. My weight has stayed steady from the previous weigh-in. I feel like I am on the Biggest Loser with the frequency of weigh-ins. This all takes about 30 minutes and I’m back to bed at about 4:00.
7:45AM—I again have slept a little, but finally gave up and turned on Sports Center. The shift has changed and my new nurse, Dawn has taken over. Vital signs time again and I have her tape me up with Saran Wrap so that I can take a shower. Other than getting the floor soaked due to my ineptness with the movable shower head, I accomplish my mission. I then shave, brush my teeth and put in my contacts. I really noticed that my hands were shaking when I put in the contacts.
8:25AM—It’s time for my long walk on the beach (OK it’s just the hallway, but a guy can dream can’t he?) After about 10 laps I see that the doctor is doing his morning rounds and I head back to the room. He checks my heart and lungs and everything is working just fine. I asked about my blood work and he says that the cell counts look pretty good at this point. I’m hoping to stay away from a transfusion, so I will be constantly asking this question.
9:00AM—I call the hospital help desk to try to get someone to improve the internet signal. It is absolutely worthless at this point. I can do without a number of things in my life, but the internet isn’t one of them. So I hope for another small miracle. He says he will try to get someone to look into it. Make that a large miracle.
9:30AM—Dawn comes in to start to get things ready for the transplant. It will only take about an hour or so, but I will be hooked up to a heart monitor and be given oxygen. Don’t know what all of the hubbub is about, they are just giving me my own cells back. I’m going to take it for granted that they know what they are doing.
11:30AM—Just like clockwork the technician from the outside lab arrives with my stem cells. Over the next half hour he begins the set-up of the thawing procedure and tells us his life story. I’m not sure which was more interesting. I get hooked up to the heart monitor and start receiving oxygen just before noon.
12:00PM—It is amazing how anticlimactic the transplant was. After getting hooked up with some Tylenol, steroids and an injection of Benadryl, I had more trouble staying awake than anything. Each of the four bags of cells took between five and ten minutes to be completed. By 12:30 it was over.
2:30PM—I’m done trying to stay awake and take an hour nap. Feeling much better, I do my second of three ten minute walks around the wing. I’m told that I smell like a can of creamed corn as the agent used to protect the cells during their freezing process oozes from my pores. Not much I can do about it, so everybody will just have to live with it for the next couple of days.
5:00PM—Dinner shows up and it is highlighted by a huge piece of chocolate cake. Needless to say, the highlight of my day if you don’t count the possibility of going into remission. At least I know for sure about the chocolate cake. Eating at five o’clock makes me feel like a senior citizen. Sad think is, I was looking forward to it.
5:30PM—Dawn turns down the IV drip from 250 ml per hour to the normal 100 ml. I can now go longer than an hour and a half without making a trip to the bathroom and collecting my urine. It is amazing what excites you on day three of seventeen in the hospital.
6:00PM—The NBA Finals start and begins an evening of boring TV. I try reading “Moneyball”, but even that doesn’t get me too thrilled. Not only that but the only presents I got for my new birthday were bottles of water that Julia picked up. Oh well, maybe this second birthday thing will catch on next year.
10:00PM—I finally give in to the boredom of the day and attempt to go to sleep. As usual, it took me a while to doze off and before I knew it, It was time for the midnight vital sign wake-up. You think on your birthday they would let you sleep through the night. Sigh….
Thursday, June 4, 2009
June 3, 2009 Day -1
Today was pretty much a down day. Nothing scheduled, just time to let the chemo do its thing before they give me my stem cells back tomorrow. I haven’t yet shown any major outward signs from the chemo, but it has messed up a few things internally. As soon as I checked in, I started to receive a steady drip of saline solution. After being in the hospital for 12 hours I was weighed for the second time and had gained 4 pounds. Pretty impressive if you ask me since I hadn’t eaten a thing.
It seems that the saline and everything else I was taking in was not all coming out. As a result, I had to get a quick fix of a drug to send me to the bathroom. Twelve hours later after about five trips, I was back down to normal. My kidneys were also acting up in other ways as the uric acid was up in my blood. Another shot of some wonder drug and that was taken care of also.
Other than that is was a quiet day. I have started to notice that I’m a little more shaky getting out of bed. Once I get moving around, it isn’t too bad, it’s just that initial movement. I’m sure it is just the chemo doing its thing.
I’m going to take the next few minutes of your time to reiterate one of the main reasons that I am writing this blog. If you remember, the reason that I found out that I had cancer was a simple trip to the doctor for my annual physical. If I hadn’t gone that day, I have no idea if I would still be around, let alone awaiting the miracle of transplant. If you haven’t already done so, please set up an appointment for a physical. It only takes an hour.
It seems that the saline and everything else I was taking in was not all coming out. As a result, I had to get a quick fix of a drug to send me to the bathroom. Twelve hours later after about five trips, I was back down to normal. My kidneys were also acting up in other ways as the uric acid was up in my blood. Another shot of some wonder drug and that was taken care of also.
Other than that is was a quiet day. I have started to notice that I’m a little more shaky getting out of bed. Once I get moving around, it isn’t too bad, it’s just that initial movement. I’m sure it is just the chemo doing its thing.
I’m going to take the next few minutes of your time to reiterate one of the main reasons that I am writing this blog. If you remember, the reason that I found out that I had cancer was a simple trip to the doctor for my annual physical. If I hadn’t gone that day, I have no idea if I would still be around, let alone awaiting the miracle of transplant. If you haven’t already done so, please set up an appointment for a physical. It only takes an hour.
Tuesday, June 2, 2009
June 2, 2009 Chemo Round 17
The visit with Dr. Mikhael went as expected and we were off to the hospital, Knowing that I was going to be subjected to hospital food for the next two and a half weeks, I really wanted a good burger so we stopped at Rock Bottom and I stuffed a BBQ bacon cheese burger down my throat along with every french fry in the room. Needless to say, when I stepped on the scale I about died at what I weighed. I not only gained everything back I had lost, I tacked on a few extra just for fun. Hey, you only live once.
I am going to do my best as this goes on to view it as a vacation. I have a nice private room with a view of the five story lobby area from the fourth floor. There is a chance that a larger room will open up, so I might get the Presidential suite before it is all over. As you can see from the picture, this is a great resort to visit if you are ever in the area although they don’t have a swimming pool.
Once I got up to the room, I thought that I had stepped into a scene from CSI Miami with all of the gorgeous women around. Now, they are not in bikinis but the nurse outfits will work just fine. I don’t want to sound like a dirty old man, but one of the criteria for getting on this wing is that you have to be an 8 or better. I guess there are advantages to fighting cancer.
The nurses work 12 hour days so I will have a series of rotating nurses through the 17 days. Emily is my nurse until 7:30, She is about 24 and cute as a button. She was very helpful with running down the rules (which I’ll fill you in on later) and explaining some of the things that will be happening during the next few days.
To my chagrin, she isn’t just a tour guide, she gets to do some of the ongoing tests that I have to participate in daily. The first that I had to do was a nasal swab. This was pretty easy and will only be done once per week. This is to check for any infection that might reside in the sinuses. However, number two wasn’t quit so, umm, easy. It was a rectal swab. I’m not even going to take you through that.
As far as the rules go, I have to collect all of my waste materials. They check everything I eat, drink and vacate to make sure that I’m not retaining liquids as I get weighed twice each day. I have to have an IV 24 hours a day dripping saline. If I leave the room, I will have to wear a mask. In addition, I have to keep my door closed.
I will not have ice after I get my chemo for fear of bacteria. I will, however, have to suck on ice for 60 minutes before the chemo, for the 60 minutes of chemo and then for 30 minutes after. This is to reduce the mouth sores that I will inevitably get. No Tylenol or Advil because they need to know if I start to have a fever. I wish this headache would go away.
Because of my late arrival, the fact that they needed to take a chest x-ray and get the chemo mixed together, I missed the 4 PM timing and will have to wait until 10 PM. I guess this will allow me to keep my hair six hours longer.
Even though I wasn’t particularly hungry, I was anxiously awaiting my dinner to see just how good the Mayo food actually was. Their café down stairs serves a mean breakfast so I anticipated at least a favorable testing of my food.
I about fell over when I saw what was delivered: vegetable lasagna, mixed vegetables and split pea soup. Did they not notice that I was a guy? My god, this is female food. As Clara used to say in the old Wendy’s commercials, “Where’s the beef?” It appears that I might be seeing more of this because of the bacteria fears. Now it looks like I won’t even have to get sick to loose weight. This vacation spot might be all inclusive, but I might have to have Julia smuggle in some real food.
My evening nurse is Meredith who happens to be from Dayton. Small world. At 9 PM, I started crunching on ice. Not a bad trick for 5 minutes. Try doing it for 150 minutes. After about an hour ,I gave in and got under a blanket. The literature said I would get cold, but, stubborn as I am, I didn’t believe it. Two hours in I was freezing and dying to go to the bathroom. In the middle of all of this it was time to receive the chemotherapy. This in itself was nothing special. Not really different from what I have received in the past. That does start the clock ticking, however. In about five days, I will notice the difference.
Pretty busy first day, but I can see myself getting board pretty quickly. My goal is to end this vacation in 12 days which is never done. Yes, I’m crazy, but what have I got to lose by being aggressive in my goals?
I am going to do my best as this goes on to view it as a vacation. I have a nice private room with a view of the five story lobby area from the fourth floor. There is a chance that a larger room will open up, so I might get the Presidential suite before it is all over. As you can see from the picture, this is a great resort to visit if you are ever in the area although they don’t have a swimming pool.
Once I got up to the room, I thought that I had stepped into a scene from CSI Miami with all of the gorgeous women around. Now, they are not in bikinis but the nurse outfits will work just fine. I don’t want to sound like a dirty old man, but one of the criteria for getting on this wing is that you have to be an 8 or better. I guess there are advantages to fighting cancer.
The nurses work 12 hour days so I will have a series of rotating nurses through the 17 days. Emily is my nurse until 7:30, She is about 24 and cute as a button. She was very helpful with running down the rules (which I’ll fill you in on later) and explaining some of the things that will be happening during the next few days.
To my chagrin, she isn’t just a tour guide, she gets to do some of the ongoing tests that I have to participate in daily. The first that I had to do was a nasal swab. This was pretty easy and will only be done once per week. This is to check for any infection that might reside in the sinuses. However, number two wasn’t quit so, umm, easy. It was a rectal swab. I’m not even going to take you through that.
As far as the rules go, I have to collect all of my waste materials. They check everything I eat, drink and vacate to make sure that I’m not retaining liquids as I get weighed twice each day. I have to have an IV 24 hours a day dripping saline. If I leave the room, I will have to wear a mask. In addition, I have to keep my door closed.
I will not have ice after I get my chemo for fear of bacteria. I will, however, have to suck on ice for 60 minutes before the chemo, for the 60 minutes of chemo and then for 30 minutes after. This is to reduce the mouth sores that I will inevitably get. No Tylenol or Advil because they need to know if I start to have a fever. I wish this headache would go away.
Because of my late arrival, the fact that they needed to take a chest x-ray and get the chemo mixed together, I missed the 4 PM timing and will have to wait until 10 PM. I guess this will allow me to keep my hair six hours longer.
Even though I wasn’t particularly hungry, I was anxiously awaiting my dinner to see just how good the Mayo food actually was. Their café down stairs serves a mean breakfast so I anticipated at least a favorable testing of my food.
I about fell over when I saw what was delivered: vegetable lasagna, mixed vegetables and split pea soup. Did they not notice that I was a guy? My god, this is female food. As Clara used to say in the old Wendy’s commercials, “Where’s the beef?” It appears that I might be seeing more of this because of the bacteria fears. Now it looks like I won’t even have to get sick to loose weight. This vacation spot might be all inclusive, but I might have to have Julia smuggle in some real food.
My evening nurse is Meredith who happens to be from Dayton. Small world. At 9 PM, I started crunching on ice. Not a bad trick for 5 minutes. Try doing it for 150 minutes. After about an hour ,I gave in and got under a blanket. The literature said I would get cold, but, stubborn as I am, I didn’t believe it. Two hours in I was freezing and dying to go to the bathroom. In the middle of all of this it was time to receive the chemotherapy. This in itself was nothing special. Not really different from what I have received in the past. That does start the clock ticking, however. In about five days, I will notice the difference.
Pretty busy first day, but I can see myself getting board pretty quickly. My goal is to end this vacation in 12 days which is never done. Yes, I’m crazy, but what have I got to lose by being aggressive in my goals?
Monday, June 1, 2009
June 1, 2009 Countdown to Minus One
Well, it’s the day before the biggest couple of days in my life. It was just over four months ago that I discovered I have cancer. Hard to believe that I may only be days away from saying that I am cancer free. What a wild ride this has been.
I can’t say that I am nervous, but there is certainly an air of anticipation. I know that in the next day, I’m going to receive chemotherapy like I have never seen before. Although I have undergone 16 treatments so far, number seventeen will probably have more side effects than the rest combined.
I had to get a few things done before the big day and subsequent house arrest so I stopped over at Dr. Obenchain’s to see Jerri, one of my two favorite nurses. Jerri was busy but made a few moments to discuss what was going to happen in the coming days and of course gave me a big hug before I left. Sammi is in Korea visiting relatives so I’ll have to wait until I’m back to normal to see her.
Most importantly, I wanted to see Dr. Obenchain. She is without a doubt my favorite doctor amongst a group of fabulous doctors. I cannot say enough about the wonderful care I have received from every doctor that I have worked with, but Dr. Obenchain is special. She makes you feel out of the ordinary. You aren’t just a patient to her; you are a person, a friend. She makes you understand the risks and benefits and does it in a way that you know she cares. That little touch on the arm that she gives just warms you up.
Yet, I am not very happy with Dr. Obenchain because she made me a promise several months ago and then reiterated it when I last saw her. She was to get something done by the time I went into the hospital for my transplant and she has yet to do it. As a friend she owes me that promise. I hope she reads this and is true to her word because it is important to me that she does as she said she would.
On the way home and in anticipation of spending more time in bed than I care to discuss, I got most of my hair whacked off today. No bed head for me. I also thought that it would be a lot less gross when it actually started falling out. Sixteen dollars well spent in my mind.
Spent the rest of the day just getting things put together for my 17 day vacation. I packed fairly light since Julia will be able to take the dirty clothes and bring them back clean the next day (nice one day turn around at a minimal fee.). Also gathered up a number of books to read while laying in the beach, er sheets. I’m bringing my walking shoes for long hikes on the 100 foot stretch of scenic view outside my room all while wearing a mask.
When I last spoke to Steve Kerrigan, the DJ from Dayton that is a survivor of multiple myeloma, he referred to the day that he received his stem cell transplant as his new birthday. I’m not sure that I will approach it the same way, but if it gets me a few extra presents and not having to do dishes and other chores around the house, I might just have to adopt it as a second day of celebration during the year.
I will see Dr. Mikhael tomorrow at 10 AM and he will either give me the thumbs up for the transplant or give me some very good reason not to. If that is the case, it had better be a darned good reason. If it is a go, we will call the hospital and let them know that we have the go-ahead. If there is a bed, we will then head over and get ready for the 4 PM chemo. Then in just two days, it will be birthday number two as I receive my stem cells back.
I can’t say that I am nervous, but there is certainly an air of anticipation. I know that in the next day, I’m going to receive chemotherapy like I have never seen before. Although I have undergone 16 treatments so far, number seventeen will probably have more side effects than the rest combined.
I had to get a few things done before the big day and subsequent house arrest so I stopped over at Dr. Obenchain’s to see Jerri, one of my two favorite nurses. Jerri was busy but made a few moments to discuss what was going to happen in the coming days and of course gave me a big hug before I left. Sammi is in Korea visiting relatives so I’ll have to wait until I’m back to normal to see her.
Most importantly, I wanted to see Dr. Obenchain. She is without a doubt my favorite doctor amongst a group of fabulous doctors. I cannot say enough about the wonderful care I have received from every doctor that I have worked with, but Dr. Obenchain is special. She makes you feel out of the ordinary. You aren’t just a patient to her; you are a person, a friend. She makes you understand the risks and benefits and does it in a way that you know she cares. That little touch on the arm that she gives just warms you up.
Yet, I am not very happy with Dr. Obenchain because she made me a promise several months ago and then reiterated it when I last saw her. She was to get something done by the time I went into the hospital for my transplant and she has yet to do it. As a friend she owes me that promise. I hope she reads this and is true to her word because it is important to me that she does as she said she would.
On the way home and in anticipation of spending more time in bed than I care to discuss, I got most of my hair whacked off today. No bed head for me. I also thought that it would be a lot less gross when it actually started falling out. Sixteen dollars well spent in my mind.
Spent the rest of the day just getting things put together for my 17 day vacation. I packed fairly light since Julia will be able to take the dirty clothes and bring them back clean the next day (nice one day turn around at a minimal fee.). Also gathered up a number of books to read while laying in the beach, er sheets. I’m bringing my walking shoes for long hikes on the 100 foot stretch of scenic view outside my room all while wearing a mask.
When I last spoke to Steve Kerrigan, the DJ from Dayton that is a survivor of multiple myeloma, he referred to the day that he received his stem cell transplant as his new birthday. I’m not sure that I will approach it the same way, but if it gets me a few extra presents and not having to do dishes and other chores around the house, I might just have to adopt it as a second day of celebration during the year.
I will see Dr. Mikhael tomorrow at 10 AM and he will either give me the thumbs up for the transplant or give me some very good reason not to. If that is the case, it had better be a darned good reason. If it is a go, we will call the hospital and let them know that we have the go-ahead. If there is a bed, we will then head over and get ready for the 4 PM chemo. Then in just two days, it will be birthday number two as I receive my stem cells back.
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