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.
Sunday, June 14, 2009
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.
Friday, May 29, 2009
May 29, 2009 Platelet Shortage
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.
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.
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.
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