Happy Halloween everyone. I can only imagine the plundering that went on tonight. If I remember correctly, the last year of Steve and I grabbing free candy on Halloween was my freshman year in high school. You gotta love that. Even still, I bet there few more of you out there that dragged it along even further. Good for you is what I say. If the groms can go out and get their goods, so can we. And if you are reading this and are one of those houses that gives away pennies, please cease and desist from reading this blog ever again, ha, just kidding, kind of. No offense
So what the hell am I supposed to be writing about…oh yeah…my health? All is good on the western front aside from my mouth and my headaches. What I have been telling everyone is that things are great from the neck down. It’s the neck up that’s killing me. The Mucositis came back in a big way and they have just made my constant headaches multiply in strength. All of this was expected so that makes it little bit easier to tolerate, but it is still a horrible way to live. I can see this hanging around for a couple more days then I’ll be fine again. To be perfectly honest with you, if that is the biggest complanit I have at this stage in the game, I think I’m doing alright for myself.
My blood counts are still very low. WBC (white blood cells) are undetectable but this is expected, the chemo and radiation made sure of that. Book says I should start to see some movement around day +15 or +20. My other counts are down too. A couple of days ago I needed two bags of blood and two bags platelets which brought them back up into the acceptable range. I’m still about 20 pounds light but I can see that going back on once I get out of here and get some of my energy back. So again, all is good on the western front health wise.
Our housing search is taking a bit longer then expected, but we’ll find something. If anyone has any sort of connection that could make this process a little less painless, please drop Evey or me a line. We are looking for a furnished, one bedroom as close to the beach as possible within 15 minutes of the hospital
That’s it for now guys. Take care, be well and we’ll catch up soon.
Friday, October 31, 2008
Tuesday, October 28, 2008
Day + 6
Wow, 6 days since the introduction of my new bone marrow and stem cells…amazing. Hi everyone, warm greetings from sunny San Diego. Not that I can enjoy any of it aside from looking through a window. With that said, I hope there are a bunch of you out on the sand somewhere. OK, enough of that, I’m starting to depress myself.
So today is officially Day + 6 and all is on track. The doctors meet with Evey and me every morning to discuss how things are going and everything so far has been positive. The nurses provide feedback regularly as well and they are saying things are going great. I do have somewhat of a sore throat, which they say is a side effect of the radiation treatment. I guess it can really break down the lining inside of the mouth, so irritations like sore throats become more prevalent…but not serious.
On a worse note, my luck ran south today. Part of the post transplant treatment is the need for a drug called FK 506. This drug is critical when it comes to fighting any sort of rejection from the new cells, so not only is it important to make sure I am getting the drug, it’s just as important to make sure I have the right levels of the drug in my system. One other thing different about FK 506 is that it sticks to the walls of the IV tubing, so in order to get a clean reading of how much of it is in my system, they need to draw blood from a tube has not had any FK 506 run through it, or they run the risk of having a false result. A false result meaning the tests show a high amount of FK 506 because they pulled some residue off the tube walls. So what they do is keep one of my two lines clean of FK 506 and dedicate the other line to the administration of the drug. That way, when it’s time to check the FK 506 levels in my system, they have a clean line to pull from.
Well, someone messed up yesterday and administered the drug through the clean line. This means that any future tests on how much or how little FK 506 I have in my system would have to be done on the other arm, blood drawn with a needle…twice a day. The alternative was to have them go in, pull out the contaminated line and replace it with a new one. I went with that and was actually pretty cool. They had the whole thing on a monitor so I got to see the procedure first hand. It’s all good now and my PIC line is back and working. I think I’m going to hang a sign or something this time just to make absolutely sure this doesn’t happen again. I don’t think that will be necessary though, because when news spread about what happened, there were a bunch of pissed off doctors and nurses. I think it goes without saying that the nurse who did this will not be doing it again for quite a while. In all honesty, what happened today is miniscule in comparison to the big picture so we’re already over it and I hope she is too.
That’s my news for today guys. It’s still a roller coaster for me when it comes to nausea, mouth issues and fatigue but those are pretty easy to fight through when you can see the finish line ahead. Thanks again for reading my rambling messages. Just knowing you guys are out there means more to me than you know. Take care, be well and we'll catch up soon.
So today is officially Day + 6 and all is on track. The doctors meet with Evey and me every morning to discuss how things are going and everything so far has been positive. The nurses provide feedback regularly as well and they are saying things are going great. I do have somewhat of a sore throat, which they say is a side effect of the radiation treatment. I guess it can really break down the lining inside of the mouth, so irritations like sore throats become more prevalent…but not serious.
On a worse note, my luck ran south today. Part of the post transplant treatment is the need for a drug called FK 506. This drug is critical when it comes to fighting any sort of rejection from the new cells, so not only is it important to make sure I am getting the drug, it’s just as important to make sure I have the right levels of the drug in my system. One other thing different about FK 506 is that it sticks to the walls of the IV tubing, so in order to get a clean reading of how much of it is in my system, they need to draw blood from a tube has not had any FK 506 run through it, or they run the risk of having a false result. A false result meaning the tests show a high amount of FK 506 because they pulled some residue off the tube walls. So what they do is keep one of my two lines clean of FK 506 and dedicate the other line to the administration of the drug. That way, when it’s time to check the FK 506 levels in my system, they have a clean line to pull from.
Well, someone messed up yesterday and administered the drug through the clean line. This means that any future tests on how much or how little FK 506 I have in my system would have to be done on the other arm, blood drawn with a needle…twice a day. The alternative was to have them go in, pull out the contaminated line and replace it with a new one. I went with that and was actually pretty cool. They had the whole thing on a monitor so I got to see the procedure first hand. It’s all good now and my PIC line is back and working. I think I’m going to hang a sign or something this time just to make absolutely sure this doesn’t happen again. I don’t think that will be necessary though, because when news spread about what happened, there were a bunch of pissed off doctors and nurses. I think it goes without saying that the nurse who did this will not be doing it again for quite a while. In all honesty, what happened today is miniscule in comparison to the big picture so we’re already over it and I hope she is too.
That’s my news for today guys. It’s still a roller coaster for me when it comes to nausea, mouth issues and fatigue but those are pretty easy to fight through when you can see the finish line ahead. Thanks again for reading my rambling messages. Just knowing you guys are out there means more to me than you know. Take care, be well and we'll catch up soon.
Saturday, October 25, 2008
Day + 3
Hello everyone. I send you greetings from the hospital as my cells engraft away...I hope. So again, Day + 3 means I am now 3 days post transplant. Things are going well and I am definitely feeling much better than last week. It's difficult not to feel better considering last week was filled with chemotherapy and radiation, but it is still nice to say. I also received some great news yesterday from the bone marrow biopsy I went through last week. The results came back and I am still in remission! I was so glad to hear that news which now means I am well positioned. My nausea, which is my worst enemy when undergoing treatment is not completely gone, but I think that has more to do with the menu here in the hospital, than my treatment last week. And that is no joke my friends.
All is on track from a progress perspective. My counts are at 0 which means it's now time for my new immune system to start to mature and do it's thing. It will probably take about 10-15 days for my cells to start to engraft and build my new immune system. Until then, all I can do is wait and be very careful not to let in any sort of infection. They even have me quarantined to my room, whereas before I was at least able to leave my room and walk the floor. When I tried that today they beat me back with a stick and told me I’m stuck here until my counts return.
It looks like we will only be here for a few weeks and then Evey and I need to live near the hospital. It is going to be tough leaving Orange County but I need to be as close as possible to the hospital for 150 days post transplant. So for the next week Evey will be hard at work trying to find our next residence. Fun, fun stuff but we’re looking forward it. If you live down here, all I can say is there goes the neighborhood
Take care guys and be well. We’ll catch up soon.
All is on track from a progress perspective. My counts are at 0 which means it's now time for my new immune system to start to mature and do it's thing. It will probably take about 10-15 days for my cells to start to engraft and build my new immune system. Until then, all I can do is wait and be very careful not to let in any sort of infection. They even have me quarantined to my room, whereas before I was at least able to leave my room and walk the floor. When I tried that today they beat me back with a stick and told me I’m stuck here until my counts return.
It looks like we will only be here for a few weeks and then Evey and I need to live near the hospital. It is going to be tough leaving Orange County but I need to be as close as possible to the hospital for 150 days post transplant. So for the next week Evey will be hard at work trying to find our next residence. Fun, fun stuff but we’re looking forward it. If you live down here, all I can say is there goes the neighborhood
Take care guys and be well. We’ll catch up soon.
Wednesday, October 22, 2008
Day 0 (October 22nd, 2008)
Day 0:
If you're unlcear on what day 0 means, please go ahead and read the last blog entry which should explain everything. Well, what a wonderful way to spend a birthday. Yesterday was the big day and I spend it curled up in a ball fighting though the worst stomach pains ever. I didn’t expect those back to back doses of chemo and radiation to really hit me that hard, but they did. Luckily I am already starting to come out of it but it has been a really tough go since Saturday afternoon when it started.
So, as of today I have completed my final rounds of chemo and radiation and have just finished taking in my new stem cells, so that transplant is done. I can’t believe it myself, but the day has finally come. There is a long way to go but I can at least say I am now on the road to recovery. It’s an odd feeling knowing that someone out there in another part of the world went through what they had to go through to get me these cells. Quite overwhelming actually.
Just to give you an idea of how the radiation works, they have you lay down on a table in an awkward position for about 45-50 minutes with your arms taped behind your head in a box type of shape. The first session was the worse because my arms had to remain like that for over an hour while they took measurements. By the time it was over I was screaming at them asking how much longer it was going to be. I’m sure they loved that. The worst part about it was thinking I had five more of those sessions to go. Luckily the final 5 sessions which were done 2 per day were much shorted and more comfortable. More comfortable because I think because I knew what was coming. Well, my final radiation treatment was at 4:00pm today and then two hours later I was watching my new stem cells enter my body. It is absolutely amazing how these things work. There are some very smart people out there who deserve all the respect in the world as well as every penny they earn. I can’t begin that thank those guys enough.
So day 0, my new birthday…the day after my real birthday…what a trip. They say that my new cells are already engrafting to my body so this stuff is already working. With that said, I am still feeling pretty bad right now. It has been tough for me to keep any kind of food down and my headaches are pretty bad, but I am very optimistic that these issues will be better tomorrow.
Thanks for reading everyone and please look out for a new post in the next couple of days. Your messages back still crack us up so please continue to write back. Like I said, Evey and I read every single one of them so keep ‘em coming. You guys are the best and I really don’t know where I’d be without you. Be well and stay in touch.
So, as of today I have completed my final rounds of chemo and radiation and have just finished taking in my new stem cells, so that transplant is done. I can’t believe it myself, but the day has finally come. There is a long way to go but I can at least say I am now on the road to recovery. It’s an odd feeling knowing that someone out there in another part of the world went through what they had to go through to get me these cells. Quite overwhelming actually.
Just to give you an idea of how the radiation works, they have you lay down on a table in an awkward position for about 45-50 minutes with your arms taped behind your head in a box type of shape. The first session was the worse because my arms had to remain like that for over an hour while they took measurements. By the time it was over I was screaming at them asking how much longer it was going to be. I’m sure they loved that. The worst part about it was thinking I had five more of those sessions to go. Luckily the final 5 sessions which were done 2 per day were much shorted and more comfortable. More comfortable because I think because I knew what was coming. Well, my final radiation treatment was at 4:00pm today and then two hours later I was watching my new stem cells enter my body. It is absolutely amazing how these things work. There are some very smart people out there who deserve all the respect in the world as well as every penny they earn. I can’t begin that thank those guys enough.
So day 0, my new birthday…the day after my real birthday…what a trip. They say that my new cells are already engrafting to my body so this stuff is already working. With that said, I am still feeling pretty bad right now. It has been tough for me to keep any kind of food down and my headaches are pretty bad, but I am very optimistic that these issues will be better tomorrow.
Thanks for reading everyone and please look out for a new post in the next couple of days. Your messages back still crack us up so please continue to write back. Like I said, Evey and I read every single one of them so keep ‘em coming. You guys are the best and I really don’t know where I’d be without you. Be well and stay in touch.
Saturday, October 18, 2008
October 18th, 2008 (Day 0 - 5)
Hi everyone and greetings from the hospital. Before I get started, I'd like to explain the date above (Day 0 - 5). Day 0 is the day I am scheduled to get my new immune system via stem cell transplant. They call it day 0 because everything going forward will work off of that day. It makes it much easier for the doctors to work with when communicating with each other because that is obviously the critical day that everything stems from. So Day 0 - 5 means that I will be getting my transplant in 5 days, on Wednesday. For example, 2 days after transplant the date will read Day 0 + 2, or simply + 2. Now onto the message.
I just checked back in today after being home for a few great weeks. I certainly had my ups and downs during that time which I wrote about, but that doesn’t take away from the fact that it was a nice and needed break from the hospital. I spent some quality time with Floyd, had a phenomenal early birthday party (Thanks Marc, Christine and Evey), and was able to spend the last few days in San Diego at a work event. I wasn’t there for work but it was really cool catching up with some old friends and spending time with people I haven’t seen in a while. Well all good things must come to an end and as difficult as it was to walk back through the hospital doors today, I am very eager to get going on the final phase of my treatment. The final phase consists of 2 days of chemo which will be Saturday and Sunday, 3 days of full body radiation which happens twice a day from Monday through Wednesday, then straight to the stem cell transplant on Wednesday night. These 5 days of treatment should pretty much annihilate my immune system to the point where the cells in my bone marrow are completely wiped out. For all intents and purposes, I will have no immune system on Wednesday night which is what you need to go forward with the stem cell transplant.
The stem cell transplant is a very non-invasive procedure for both the donor and me. On the donor side it consists of a lengthy process of taking blood out, filtering that blood for the stem cells it needs, then putting the unused blood back in. This is done over the course of four days for four hours each day. So it’s not necessarily a painful procedure on the donor’s end, but it takes a hell of a long time and is certainly a disruption to his life. For that I will forever be in is debt, even though I have no idea who he is. What I do know is that he is 29 years old, is in very good health and is from Sweden. On my side, the procedure consists of a basic blood transfusion where they pump in the new stem cells via my IV. It’s that simple. The amazing thing is that these stem cells for whatever reason know exactly where to go and what to do as soon as they enter my system. In fact, they should start attaching to my empty marrow inside of 30 minutes.
In my last blog, I gave you a brief understanding of blood counts and what the numbers mean. My counts over the last week and a half have continued to go up and get healthier. Although I haven’t felt the best over the last week or so, my counts are showing that my immune system continues to grow, and that is a great sign of things to come as my body takes to the stem cell transplant. As of right now, my white blood cell count is at 6,500 which means I have an immune system as good as anyone healthy and cancer free. My hemoglobin count is at 9.4 which means there are normal amounts of oxygen being delivered throughout my body. And finally my platelet count is at 127,000 which means all is good from a healing perspective. So with that said, all is good and I can only hope I have the same sort of recovery post transplant. My doctors are very optimistic that all will go very well and this will be a huge success. That was really good to hear from them and as a result, Evey and I are just as optimistic.
That’s it for now everyone. Take care of yourselves, be well and I’ll catch up soon. I will try to write every other day or so depending on how I feel.
I just checked back in today after being home for a few great weeks. I certainly had my ups and downs during that time which I wrote about, but that doesn’t take away from the fact that it was a nice and needed break from the hospital. I spent some quality time with Floyd, had a phenomenal early birthday party (Thanks Marc, Christine and Evey), and was able to spend the last few days in San Diego at a work event. I wasn’t there for work but it was really cool catching up with some old friends and spending time with people I haven’t seen in a while. Well all good things must come to an end and as difficult as it was to walk back through the hospital doors today, I am very eager to get going on the final phase of my treatment. The final phase consists of 2 days of chemo which will be Saturday and Sunday, 3 days of full body radiation which happens twice a day from Monday through Wednesday, then straight to the stem cell transplant on Wednesday night. These 5 days of treatment should pretty much annihilate my immune system to the point where the cells in my bone marrow are completely wiped out. For all intents and purposes, I will have no immune system on Wednesday night which is what you need to go forward with the stem cell transplant.
The stem cell transplant is a very non-invasive procedure for both the donor and me. On the donor side it consists of a lengthy process of taking blood out, filtering that blood for the stem cells it needs, then putting the unused blood back in. This is done over the course of four days for four hours each day. So it’s not necessarily a painful procedure on the donor’s end, but it takes a hell of a long time and is certainly a disruption to his life. For that I will forever be in is debt, even though I have no idea who he is. What I do know is that he is 29 years old, is in very good health and is from Sweden. On my side, the procedure consists of a basic blood transfusion where they pump in the new stem cells via my IV. It’s that simple. The amazing thing is that these stem cells for whatever reason know exactly where to go and what to do as soon as they enter my system. In fact, they should start attaching to my empty marrow inside of 30 minutes.
In my last blog, I gave you a brief understanding of blood counts and what the numbers mean. My counts over the last week and a half have continued to go up and get healthier. Although I haven’t felt the best over the last week or so, my counts are showing that my immune system continues to grow, and that is a great sign of things to come as my body takes to the stem cell transplant. As of right now, my white blood cell count is at 6,500 which means I have an immune system as good as anyone healthy and cancer free. My hemoglobin count is at 9.4 which means there are normal amounts of oxygen being delivered throughout my body. And finally my platelet count is at 127,000 which means all is good from a healing perspective. So with that said, all is good and I can only hope I have the same sort of recovery post transplant. My doctors are very optimistic that all will go very well and this will be a huge success. That was really good to hear from them and as a result, Evey and I are just as optimistic.
That’s it for now everyone. Take care of yourselves, be well and I’ll catch up soon. I will try to write every other day or so depending on how I feel.
Saturday, October 11, 2008
Saturday, October 11th, 2008
Good morning everyone and happy Saturday. Even though I haven't worked in quite some time, Saturday morning for some reason always has a great feeling. I know, I know, it's amazing this is the second message this week. Trying to pick it up from my end.
This week has been a struggle as you could tell from my last message, but I'm happy to say the mucositis has started to subside and I am feeling much better again. I was in the hospital on Friday and all looked good. The culture they took off of my tongue came back negative to there is nothing funky going on there. Kind of expected that but it's always good to hear. I can only hope and pray that my time with mucositis is done.
As I said, I was down in San Diego on Friday. I am actually down there 3 days a week getting my counts checked. By counts I mean blood counts. they look at roughly 60 different measurements in my blood ranging from sodium levels to white and red cells. The main ones I keep track of are WBC (White blood cells), HGB (Hemoglobin) and Platelets.
WBC (White Blood Cells) - Important because they are what enable your body to fight infection. If your white blood cells are low, you're immune system is at risk. A healthy WBC is in the range of 4,000 - 10,000.
HGB (Hemoglobin) - Transports oxygen from the lungs to the rest of the body. One of the reasons I went to the doctor in the first place is because I was getting extremely fatigued when I would exercise. I went from running 7-8 miles at a time to a point where I couldn't even go a mile without stopping. That is because my hemoglobin was pretty much gone. A healthy HGB is in the range of 14 - 17.
Platelets - Allow your blood to clot and scab up when you have a cut. A healthy platelet count is above 140,000.
So these are the big ones I keep track of myself and get tested on three days a week. After chemo, it’s perfectly normal that all of these counts drop to pretty much nothing. The chemo is a poison that throws the baby out with the bath water so everything gets killed. That is why you pretty much feel dead during and after chemo. Here is what my counts looked like this week so you have an example of what I’m talking about:
Monday, Oct 6th:
WBC was 0 so that means no immune system. This is a very dangerous and risky position to be in.
HGB count was 6 so my body was receiving less than half of its normal oxygen supply. Because this number is so low, they infused two bags of blood into my body which drives up the HGB count.
Platelets were 4,000...well below the 140,000 mark. Again, because this number is so low, they infused a bag of platelets into my body as well. All of this is done via IV so it is painless but makes for a long day. There is nothing they can do for WBC except wait for my marrow to wake up and go to work.
Wednesday, Oct 8th:
WBC started to grow and came in at 1,300, so my marrow got to it.
HGB was still very low at 7.7 so I had to get another two bags of blood infused. Platelets were very low again at 12,000 so I again had to get a bag of platelets infused.
Friday, Oct 10th:
WBC grew to 4,700 so things are doing great there. This basically means that I have a normal immune system. Don't worry, chemo and radiation next week will take care of that.
HGB measured at 10.3 which is above the infusion threshold so I didn't have to take any blood.
Platelets were 31,000. This is also above the infusion threshold so I didn't have to take any platelets.
So there you have it. I bet you didn't think you were in store for a science class huh. I wanted to give you an idea of what the key blood markers are I get tested for, what the numbers look like and how they affect me. I am officially in my last week of freedom before I go back to the hospital full time. This next week will be full of poking, prodding and testing so it should be a good one. I'll keep you all updated on how those tests turn out.
Take care everyone and be well.
This week has been a struggle as you could tell from my last message, but I'm happy to say the mucositis has started to subside and I am feeling much better again. I was in the hospital on Friday and all looked good. The culture they took off of my tongue came back negative to there is nothing funky going on there. Kind of expected that but it's always good to hear. I can only hope and pray that my time with mucositis is done.
As I said, I was down in San Diego on Friday. I am actually down there 3 days a week getting my counts checked. By counts I mean blood counts. they look at roughly 60 different measurements in my blood ranging from sodium levels to white and red cells. The main ones I keep track of are WBC (White blood cells), HGB (Hemoglobin) and Platelets.
WBC (White Blood Cells) - Important because they are what enable your body to fight infection. If your white blood cells are low, you're immune system is at risk. A healthy WBC is in the range of 4,000 - 10,000.
HGB (Hemoglobin) - Transports oxygen from the lungs to the rest of the body. One of the reasons I went to the doctor in the first place is because I was getting extremely fatigued when I would exercise. I went from running 7-8 miles at a time to a point where I couldn't even go a mile without stopping. That is because my hemoglobin was pretty much gone. A healthy HGB is in the range of 14 - 17.
Platelets - Allow your blood to clot and scab up when you have a cut. A healthy platelet count is above 140,000.
So these are the big ones I keep track of myself and get tested on three days a week. After chemo, it’s perfectly normal that all of these counts drop to pretty much nothing. The chemo is a poison that throws the baby out with the bath water so everything gets killed. That is why you pretty much feel dead during and after chemo. Here is what my counts looked like this week so you have an example of what I’m talking about:
Monday, Oct 6th:
WBC was 0 so that means no immune system. This is a very dangerous and risky position to be in.
HGB count was 6 so my body was receiving less than half of its normal oxygen supply. Because this number is so low, they infused two bags of blood into my body which drives up the HGB count.
Platelets were 4,000...well below the 140,000 mark. Again, because this number is so low, they infused a bag of platelets into my body as well. All of this is done via IV so it is painless but makes for a long day. There is nothing they can do for WBC except wait for my marrow to wake up and go to work.
Wednesday, Oct 8th:
WBC started to grow and came in at 1,300, so my marrow got to it.
HGB was still very low at 7.7 so I had to get another two bags of blood infused. Platelets were very low again at 12,000 so I again had to get a bag of platelets infused.
Friday, Oct 10th:
WBC grew to 4,700 so things are doing great there. This basically means that I have a normal immune system. Don't worry, chemo and radiation next week will take care of that.
HGB measured at 10.3 which is above the infusion threshold so I didn't have to take any blood.
Platelets were 31,000. This is also above the infusion threshold so I didn't have to take any platelets.
So there you have it. I bet you didn't think you were in store for a science class huh. I wanted to give you an idea of what the key blood markers are I get tested for, what the numbers look like and how they affect me. I am officially in my last week of freedom before I go back to the hospital full time. This next week will be full of poking, prodding and testing so it should be a good one. I'll keep you all updated on how those tests turn out.
Take care everyone and be well.
Wednesday, October 8, 2008
Wednesday, September 8th, 2008
Hi everyone,
reaching out to you in the midst of another heat wave. I think it hit 100 degrees again today. It’s nice to know that even though I missed most of summer in the hospital, I can count on good old So Cal to extend it out a few months for me. Evey and I are still walking Floyd every morning and it really is one of the best parts of my day. Being outside, smelling the fresh cut grass, spending quality time with Floyd and Evey, feeling the sun on my face and even in one case the rain on my head. You gotta love So Cal. I know I’m loving every day of it while I’m out of the hospital.
Things are all on track with regards to the transplant. I still have a hospital readmission date of October 17th with a transplant date of the 23rd. I have been assured that what happened with the first donor is highly irregular and should not be expected to happen again. For those of you who don’t know, the first donor had what his doctor called “medical complications” the forced us to move on to another donor. It’s tough not to expect something to go wrong given everything that has happened, but we are optimistic that all will go smoothly.
As far as my health goes, I have been doing relatively well. I say relatively because it was only 10 days ago that I finished the toughest, most brutal regimen of chemo to date. Since I walked out of the hospital on Friday afternoon the 26th, I have experienced some nausea and a little bit of joint pain due to some medication, but nothing has compared to what I am battling now…a side effect called mucositis. This is basically a condition that results in extremely painful mouth sores. I know, glamorous huh? I had dodged these for the first 4 months of my treatment knowing the entire time how lucky I had been. Well, my luck ran out and I got nailed by it last Thursday. Lucky for me, instead of having multiple small sores spread around the mouth, I had one big one located right at the base of the bottom of my tongue…sarcasm of course. I could not have been more unlucky. It is no exaggeration when I tell you that this has been the most painful experience I have ever had to deal with in my entire life. I never could have imagined how speaking, eating and drinking could be so painful. Pretty much any tongue movement put me in agony. To make the experience even better, the doctor had to take a biopsy of it on Monday. This meant scraping the top layer off the top of the sore with a hard plastic brush. I’d like to say my eyes were watering but I’m pretty sure I was crying. Just ask Evey, she was in the room laughing at me, just kidding. The good news is I finally feel like it is getting better. It is still there and very painful, but by the way it feels today, I can say it’s on it’s way out.
I touched on the Light the Night Walk on my last entry. Besides, I think most of you who read this blog either donated or participated in the walk. Again, I want to thank everyone who did either of those two things…and I want to especially thank Van Skoglund for taking the lead and handling pretty much the whole thing. He took care of the shirts, coordinated the food, dealt with the charity on one side and all of you on the other. It really could not have been the event it was without Van’s help and Evey and I owe him a huge debt of gratitude. Thank you so much. I also want to thank Natasha for celebrating her birthday with us on that day. If you were lucky enough to be there, you know how much fun it was and how much of a great time Team Chrome Dome had. I will commit to you that we get some pictures of the event on this site. Look for those one or two days from now. We had a huge pre-party, took pictures with Rod Carew, walked on the field of Angel Stadium while getting our mugs on the big screen and closed out the night with a birthday party for Natasha at the Yardhouse. It was quite a night that left a few soldiers badly wounded. It really turned out to be a day that life should be all about. It was a special time with family and friends, giving back to a great cause while having the time of our lives doing it. We couldn’t have scripted it better.
That should pretty much bring you up to speed with what’s going on. Evey and I again want to thank everyone for your unwavering support. This experience is still a roller coaster with ups, downs and loops all over the place, but we will be pulling up into that station soon enough. The transplant phase begins very soon and it can’t come a day too early. I can’t wait to take this on, succeed and be looking back at it in no time.
Take care and be well everyone…
reaching out to you in the midst of another heat wave. I think it hit 100 degrees again today. It’s nice to know that even though I missed most of summer in the hospital, I can count on good old So Cal to extend it out a few months for me. Evey and I are still walking Floyd every morning and it really is one of the best parts of my day. Being outside, smelling the fresh cut grass, spending quality time with Floyd and Evey, feeling the sun on my face and even in one case the rain on my head. You gotta love So Cal. I know I’m loving every day of it while I’m out of the hospital.
Things are all on track with regards to the transplant. I still have a hospital readmission date of October 17th with a transplant date of the 23rd. I have been assured that what happened with the first donor is highly irregular and should not be expected to happen again. For those of you who don’t know, the first donor had what his doctor called “medical complications” the forced us to move on to another donor. It’s tough not to expect something to go wrong given everything that has happened, but we are optimistic that all will go smoothly.
As far as my health goes, I have been doing relatively well. I say relatively because it was only 10 days ago that I finished the toughest, most brutal regimen of chemo to date. Since I walked out of the hospital on Friday afternoon the 26th, I have experienced some nausea and a little bit of joint pain due to some medication, but nothing has compared to what I am battling now…a side effect called mucositis. This is basically a condition that results in extremely painful mouth sores. I know, glamorous huh? I had dodged these for the first 4 months of my treatment knowing the entire time how lucky I had been. Well, my luck ran out and I got nailed by it last Thursday. Lucky for me, instead of having multiple small sores spread around the mouth, I had one big one located right at the base of the bottom of my tongue…sarcasm of course. I could not have been more unlucky. It is no exaggeration when I tell you that this has been the most painful experience I have ever had to deal with in my entire life. I never could have imagined how speaking, eating and drinking could be so painful. Pretty much any tongue movement put me in agony. To make the experience even better, the doctor had to take a biopsy of it on Monday. This meant scraping the top layer off the top of the sore with a hard plastic brush. I’d like to say my eyes were watering but I’m pretty sure I was crying. Just ask Evey, she was in the room laughing at me, just kidding. The good news is I finally feel like it is getting better. It is still there and very painful, but by the way it feels today, I can say it’s on it’s way out.
I touched on the Light the Night Walk on my last entry. Besides, I think most of you who read this blog either donated or participated in the walk. Again, I want to thank everyone who did either of those two things…and I want to especially thank Van Skoglund for taking the lead and handling pretty much the whole thing. He took care of the shirts, coordinated the food, dealt with the charity on one side and all of you on the other. It really could not have been the event it was without Van’s help and Evey and I owe him a huge debt of gratitude. Thank you so much. I also want to thank Natasha for celebrating her birthday with us on that day. If you were lucky enough to be there, you know how much fun it was and how much of a great time Team Chrome Dome had. I will commit to you that we get some pictures of the event on this site. Look for those one or two days from now. We had a huge pre-party, took pictures with Rod Carew, walked on the field of Angel Stadium while getting our mugs on the big screen and closed out the night with a birthday party for Natasha at the Yardhouse. It was quite a night that left a few soldiers badly wounded. It really turned out to be a day that life should be all about. It was a special time with family and friends, giving back to a great cause while having the time of our lives doing it. We couldn’t have scripted it better.
That should pretty much bring you up to speed with what’s going on. Evey and I again want to thank everyone for your unwavering support. This experience is still a roller coaster with ups, downs and loops all over the place, but we will be pulling up into that station soon enough. The transplant phase begins very soon and it can’t come a day too early. I can’t wait to take this on, succeed and be looking back at it in no time.
Take care and be well everyone…
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