The doctors and nurses coming through my room who look me over and check my signs all say the same thing: "bored is good". Compared to my last extended stay here at the UofC Hospitals, I can agree, but my mind compared to then is far more alert and my body certainly feels much, much stronger. I can get out of bed without help, for starters. i can walk down the hall and take rides on the stationary bike, too, but getting out of bed and spinning a wheel for any period of time doesn't take away the feeling of boredom. It must be time for me to work on being a patient patient.
My lab results as of this morning mark me as Neutropenic as my platelet count went below 50 (42) and my WBC fell to 0.9. The White Blood Count surprises me, because I started receiving the shots that are meant to spur on the growth of more WBC, but I was told today that would take nearly a week. I should have realized that from the treatment my sister Jeanne went through and so I will have to just wait for my counts to get back to the normal person range. While I count the days, of course.
My friends are still amazing me with their kindness and outpouring of affection. I've had a nice small stream of close friends bringing me foods I love (today i had pork chop sammich from Maxwell Street. Damn good) and keeping me entertained as well as can be entertained in this 12 x 10 box. If I didn't have my friends, I would have lost my mind a few days ago, even though the staff in the hospital try and keep us patients happy (i.e., the pina coloda smoothie I'm sucking down from the afternoon ice cream cart while i type), because I am just not accustomed to waiting for things to happen. I much rather prefer to poke sticks in the fire and raise more flames. Perhaps i will start poking at things next week if I get stir crazy. For right now, however, I will adhere to the mantra of all the medical professionals in charge of my health and myself and just repeat "Bored is Good". It's gotta beat the agony of tubes in every orifice and complete muscle atrophy, yeah?
Friday, April 30, 2010
Wednesday, April 28, 2010
Transplant complete
Now the transplant is done, I'm all better and can get on to getting home, yeah?
Not that fast or simple, my peoples. i wish it were. Now comes the steep and heavy watchful eyes on my poor battered immuno system. I must remain healthy. No infections, no illnesses, no colds, no sneezing, no throat tickles, no nothing.
The transplant itself was indeed anti-climactic. I actually slept through most of it, as the additive they put in the stem cells from Jeanne, made me sleepy when combined with the Adovair(sp?). And today, the day after, I apparently smell an awful lot like creamed corn. Cooking up right here in my little chamber at the U of C Medical Center. Of course, i cannot smell it, as it the odor is oozing from my pores, but those who walk in my small domain comment on it as if I were the Del Monte man himself. The other small side effect I noticed was that with every bag of cells, my face would flush and my temperature would elevate a tad. But after the second bag, I slept though the remainder of the transplant, so I cannot accurately relay if this occurred on every bag.
Yesterday, after I awoke from my restful procedure, my appetite was back on track, and I was ravished and ate a hot dog, followed by some beef panang. Now as I wake this morning, my usual hunger pains that I have become accustomed to having the minute I open my eyes are not with me. In fact I feel bloated and full, even though I am not holding anything inside, at least not that I'm aware. i wonder if one or two of these anti-biotics are bloating me out or maybe it was the MSG in my panang. Either way, I am not hungry as per usual, and that is kind of bumming me out a bit. I do have a bit of nervous energy, but that may be from all of the sleep I've accumulated in the past 36 hours. I suspect that as soon as I am able (when the lounge opens) I will go down the hall and get on the stationary bike, just to calm myself down and perhaps burn off some of this bloat.
The sun comes up as I write and I can't help to think "Another Sunrise Seen, Another Blessing". Little more than three months ago, I certainly was in no shape to even think about moving around and getting down the hall, let alone on a bike of any sorts. All i have to this time is stay the hell outta the ICU, remain healthy, and wait. Tick, tock.
I appreciate all the well wishes, prayers and thoughts that came across yesterday, and I hope you all will see me succeed at kicking cancer's carapace in a righteous manner. When I am well, I will invite you all to a grand party for us all to celebrate together, so that I may show my gratitude in person.
Patience.
Not that fast or simple, my peoples. i wish it were. Now comes the steep and heavy watchful eyes on my poor battered immuno system. I must remain healthy. No infections, no illnesses, no colds, no sneezing, no throat tickles, no nothing.
The transplant itself was indeed anti-climactic. I actually slept through most of it, as the additive they put in the stem cells from Jeanne, made me sleepy when combined with the Adovair(sp?). And today, the day after, I apparently smell an awful lot like creamed corn. Cooking up right here in my little chamber at the U of C Medical Center. Of course, i cannot smell it, as it the odor is oozing from my pores, but those who walk in my small domain comment on it as if I were the Del Monte man himself. The other small side effect I noticed was that with every bag of cells, my face would flush and my temperature would elevate a tad. But after the second bag, I slept though the remainder of the transplant, so I cannot accurately relay if this occurred on every bag.
Yesterday, after I awoke from my restful procedure, my appetite was back on track, and I was ravished and ate a hot dog, followed by some beef panang. Now as I wake this morning, my usual hunger pains that I have become accustomed to having the minute I open my eyes are not with me. In fact I feel bloated and full, even though I am not holding anything inside, at least not that I'm aware. i wonder if one or two of these anti-biotics are bloating me out or maybe it was the MSG in my panang. Either way, I am not hungry as per usual, and that is kind of bumming me out a bit. I do have a bit of nervous energy, but that may be from all of the sleep I've accumulated in the past 36 hours. I suspect that as soon as I am able (when the lounge opens) I will go down the hall and get on the stationary bike, just to calm myself down and perhaps burn off some of this bloat.
The sun comes up as I write and I can't help to think "Another Sunrise Seen, Another Blessing". Little more than three months ago, I certainly was in no shape to even think about moving around and getting down the hall, let alone on a bike of any sorts. All i have to this time is stay the hell outta the ICU, remain healthy, and wait. Tick, tock.
I appreciate all the well wishes, prayers and thoughts that came across yesterday, and I hope you all will see me succeed at kicking cancer's carapace in a righteous manner. When I am well, I will invite you all to a grand party for us all to celebrate together, so that I may show my gratitude in person.
Patience.
Sunday, April 25, 2010
Last day of Chemo, today Sunday the 25th.
Today will be my last day of chemo and allegedly this is the day that will do the most damage to my body. This malphalan stuff will make me lose my hair, give me mouth sores and diarrhea. What a Sunday Funday!
Oh, yeah, I had to take the anti-nausea meds first so I'm not all pukey. Hopefully, I get through this with most of the above happening, but my immune system, the one that I have gotten used to removing all illnesses within hours, has been disabled and wiped out in the effort to prepare my body for the transplant on Tuesday. Before Tuesday's transplant comes Monday, my only day off from Chemo and treatments. I'm curious to see if I get separated from my constant companion during this stay at Hotel de University of Chicago, the IV pole. He's not very talkative and most of the time, is just trying to trip me up, slow me down, or hold me back. That rat bastard. I'd like to throw him in the River.
Don't get me wrong, I'm not trying to complain here, I'm just bit run-down and keep getting more run down as my treatment moves along; I was told this would happen and I am prepared as well as anyone could be.
I am grateful for all of my friends who have written me and come to visit me in my 'hotel' rooms. I feel as if I have the biggest support team around and they give me the strength I need to move forward and get out of this cancerous situation. I am extremely grateful for my sister Jeanne's kind donation of time and Stem cells. I'll be writing letters to Santa on her behalf, you can bet on that. I'm grateful for my angel, the lovely Leslie, for without her constant questioning, I wouldn't be as healthy as I am now, and realistically, missing an organ or two if she hadn't started questioning the doctors from day one. She's been the real rock throughout this ordeal, and also the comforting pillow where I can rest my head, reviving my strength for me to continue on and continue my fight.
I'll be out of the hospital in little more than two weeks, and hope to be living my normal life at the beginning of July. I was hoping for the beginning of June, but that would be too amazing for even the best superhero. In all likely hood, that means no Bluesfest for me. Mark my words right now, There will be a Chickenfest this summer and all of y'all are invited. The date will be revealed (or decided upon) when I can fully claim myself to be free of cancer so we can celebrate with beer and chicken-eating.
While I wrote this, the Malphalan was pumped into my central line and this line of type signifies the end of my Chemo. Not the effects, mind you, but the end of mean spirited drugs entering my veins. Hooray for that, and thanks for all your well wishing, prayers, cards, emails and what-nots. I hope to thank you all in person while we eat chicken this summer.
Tuesday is transplant day, so send Jeanne some thanks and Leslie some help so we can all be happy together, yeah?
Oh, yeah, I had to take the anti-nausea meds first so I'm not all pukey. Hopefully, I get through this with most of the above happening, but my immune system, the one that I have gotten used to removing all illnesses within hours, has been disabled and wiped out in the effort to prepare my body for the transplant on Tuesday. Before Tuesday's transplant comes Monday, my only day off from Chemo and treatments. I'm curious to see if I get separated from my constant companion during this stay at Hotel de University of Chicago, the IV pole. He's not very talkative and most of the time, is just trying to trip me up, slow me down, or hold me back. That rat bastard. I'd like to throw him in the River.
Don't get me wrong, I'm not trying to complain here, I'm just bit run-down and keep getting more run down as my treatment moves along; I was told this would happen and I am prepared as well as anyone could be.
I am grateful for all of my friends who have written me and come to visit me in my 'hotel' rooms. I feel as if I have the biggest support team around and they give me the strength I need to move forward and get out of this cancerous situation. I am extremely grateful for my sister Jeanne's kind donation of time and Stem cells. I'll be writing letters to Santa on her behalf, you can bet on that. I'm grateful for my angel, the lovely Leslie, for without her constant questioning, I wouldn't be as healthy as I am now, and realistically, missing an organ or two if she hadn't started questioning the doctors from day one. She's been the real rock throughout this ordeal, and also the comforting pillow where I can rest my head, reviving my strength for me to continue on and continue my fight.
I'll be out of the hospital in little more than two weeks, and hope to be living my normal life at the beginning of July. I was hoping for the beginning of June, but that would be too amazing for even the best superhero. In all likely hood, that means no Bluesfest for me. Mark my words right now, There will be a Chickenfest this summer and all of y'all are invited. The date will be revealed (or decided upon) when I can fully claim myself to be free of cancer so we can celebrate with beer and chicken-eating.
While I wrote this, the Malphalan was pumped into my central line and this line of type signifies the end of my Chemo. Not the effects, mind you, but the end of mean spirited drugs entering my veins. Hooray for that, and thanks for all your well wishing, prayers, cards, emails and what-nots. I hope to thank you all in person while we eat chicken this summer.
Tuesday is transplant day, so send Jeanne some thanks and Leslie some help so we can all be happy together, yeah?
Sunday, April 18, 2010
I get my hair cut twice a year, whether it needs it or not...
(apologies for the sideways viewing)
I'm a big fan of mohawks and think they look supercool.
Cancer hasn't met a guy like me before. I'm about to open up a gigantic can of whoop-ass on Señor leukemia and hope to never see him again.
Thanks to my sister and her donation of time and stem cells, I should be healthy and back to normal style living before summer's start, at least that's what I'm on planning on. The doctorinos are preaching caution and guarded optimism but I can't start thinking of losing any battles in my personal war against the cancer in my blood. Hell, I've amazed myself in the vast difference between pictures I took of myself in January and what I see today in the mirror.
So I've cut my hair in the style of the classic fierce American warrior, as I prepare to take no prisoners and cut the fear out of the word "cancer" right along ridding the cancer from my body.
Monday, April 12, 2010
A Screwy Blessing In Disguise & Random Roadtrips
Monday April 12, 2010
Hey All, Leslie here. Man, do I have some interesting updates for you all.
Okay first and foremost, Mark is doing so incredibly well. His doctors actually have postponed his admit date to April 19th, and his actual transplant will not happen now until April 26th. The week of the 19th he will begin the hardcore drug treatment, "pre-op" plan, and yes, we just found out that he will be losing his hair. They are giving him 1 shot, of 1 drug, only 1 time. It's called Melphalan, and he'll be getting it on the day after he's admitted. It's apparently so potent, it will definitely kill his hair follicle cells too. He's surprisingly okay with this, as he's planning a mohawk. You think I'm kidding. He wants to dye it blonde. I promise you, I'll take pics.
So...here's a bit of my news: I was laid off from my job, (of 12 years), on April 1. I'm finally pretty okay with it. I get to be with Mark as much as possible as he goes through this, and I don't have to worry about my PTO days or any other "day job" nonsense. Yes, I was completely blindsided and in shock. Mark totally took care of me and has been absolutely wonderful with my ups and downs in dealing with it. It really is like a death, especially after you've been at the same company for so long. Thankfully, I was taken care of with a severance and am now on unemployment, as I figure out my next steps. I knocked my resume into shape, after not having looked at it for oh...a decade or so (I know, bad!!), and I realized that I actually do have a LOT of marketable skills and that there really is no reason for me to be freaked out. My initial panic and anxiety had me convincing myself that I'd never find another job ever again...(my flair for the dramatic works in bad ways too...lol). I'll be okay, I will land on my feet. I always do. Thank god for the amazing support system I've got around me. Thank god for Mark. So, I'm trying to believe this was my screwy blessing in disguise. The possibilities are endless, and this is truly a once in a lifetime kind of thing, so my goodness am I going to enjoy this. I have so many ideas for what I'm going to do, and I can't wait to try them all. In the meantime, I get to be close by the man I love as he travels through one of the most difficult times in his life. Thank you universe for forcing me out of my comfort zone in order to embark onto better things.
In the time I've been laid off, Mark and I have had so much fun. We've been to two Sox games (yes, he's a die-hard Cubs fan, but they weren't in town for opening week, so if Mark has any chance to see baseball, he's all about it, even if it is the Sox). His doctor even cleared it that he could go, that it was alright that he was around that many people because it was in the open air.
We went to Cascade drive-in movie theater to see a double feature, (Clash of the Titans & Cop Out). Since he can't be actually "in" a movie theater with tons of people around, a drive in was perfect.
Our next "no day jobs" adventure, had us at Hawthorne Race Track to see the Illinois Derby. I won $17. ;)
And the best part? As I type this, I'm sitting on the back porch of a Palm City, FL home, staring out into a beautiful lake, in 75 degree weather. When his appointment was switched, we decided to hop into the car, (we brought Godiva), to take a spontaneous road trip to visit his brother Pat and his sister-in-law Cheri before he went in for transplant. How cool is that?? We've had a blast driving down here. We stopped in Nashville, TN and saw Music City and had some traditional Tennessee bbq. Next, we headed to Savannah, GA and hung out a bit on the River Walk, (what a beautiful city. I would love to go back and spend more time there). Our next stop was in Melbourne, FL where we stopped at Bonefish Willy's to have some fresh oysters & beer...right on the water,(it was delightful). Then, we hightailed it to Palm City, FL to surprise his brother. Cheri, (Pat's wife) knew we were coming, but Pat did not so it was a huge surprise to him to see Mark walking up to his front door with Godiva and myself. It was a pretty cool moment. After only having heard (and read) the crazy stuff his brother had been through, I'm sure it did Pat's soul good to see Mark, beaming smile and all, walking up his front porch to greet him. I personally got a bit choked up to tell ya the truth.
We hung out last night with Pat & Cheri and Mark made a delicious dinner of fresh shrimp & steak, with asparagus and a caprese salad. The four of us drank wine and played poker and laughed...a lot. It was truly a lovely time. Pat & Cheri's house is so pretty and homey and just plain relaxing. Godiva & their dog, Bailey get along for the most part, aside from a few tense moments, it's been totally fine. Godiva almost immediately went for a swim, and I got it on video, (trying to figure out how to get it uploaded here...will post as soon as that happens). :)
I think today's plan might either be golf or the beach, not sure...who cares though, we're on vacation right? Mark and Pat and the dogs are fishing off of the dock now, what a lovely time.
Will keep you all updated as the days get closer to transplant. Mark's in amazingly great spirits, and he is still in his ass kicking mindset, which I believe makes all the difference in the world.
Love to you all.
-Leslie & Mark
Some pix and a video:
Mark at one of the Sox games we went to, wearing the Rockies windbreaker that his dad sent him from Vegas:
Mark, as happy as can be after eating some fresh oysters and drinking some beer at Bonefish Willy's in Melbourne, FL:
Me, (also after oysters), at Bonefish Willy's in Melbourne, FL...good shot by Mark, with his cell phone!!:
Mark & Pat, all smiles!!
Hey All, Leslie here. Man, do I have some interesting updates for you all.
Okay first and foremost, Mark is doing so incredibly well. His doctors actually have postponed his admit date to April 19th, and his actual transplant will not happen now until April 26th. The week of the 19th he will begin the hardcore drug treatment, "pre-op" plan, and yes, we just found out that he will be losing his hair. They are giving him 1 shot, of 1 drug, only 1 time. It's called Melphalan, and he'll be getting it on the day after he's admitted. It's apparently so potent, it will definitely kill his hair follicle cells too. He's surprisingly okay with this, as he's planning a mohawk. You think I'm kidding. He wants to dye it blonde. I promise you, I'll take pics.
So...here's a bit of my news: I was laid off from my job, (of 12 years), on April 1. I'm finally pretty okay with it. I get to be with Mark as much as possible as he goes through this, and I don't have to worry about my PTO days or any other "day job" nonsense. Yes, I was completely blindsided and in shock. Mark totally took care of me and has been absolutely wonderful with my ups and downs in dealing with it. It really is like a death, especially after you've been at the same company for so long. Thankfully, I was taken care of with a severance and am now on unemployment, as I figure out my next steps. I knocked my resume into shape, after not having looked at it for oh...a decade or so (I know, bad!!), and I realized that I actually do have a LOT of marketable skills and that there really is no reason for me to be freaked out. My initial panic and anxiety had me convincing myself that I'd never find another job ever again...(my flair for the dramatic works in bad ways too...lol). I'll be okay, I will land on my feet. I always do. Thank god for the amazing support system I've got around me. Thank god for Mark. So, I'm trying to believe this was my screwy blessing in disguise. The possibilities are endless, and this is truly a once in a lifetime kind of thing, so my goodness am I going to enjoy this. I have so many ideas for what I'm going to do, and I can't wait to try them all. In the meantime, I get to be close by the man I love as he travels through one of the most difficult times in his life. Thank you universe for forcing me out of my comfort zone in order to embark onto better things.
In the time I've been laid off, Mark and I have had so much fun. We've been to two Sox games (yes, he's a die-hard Cubs fan, but they weren't in town for opening week, so if Mark has any chance to see baseball, he's all about it, even if it is the Sox). His doctor even cleared it that he could go, that it was alright that he was around that many people because it was in the open air.
We went to Cascade drive-in movie theater to see a double feature, (Clash of the Titans & Cop Out). Since he can't be actually "in" a movie theater with tons of people around, a drive in was perfect.
Our next "no day jobs" adventure, had us at Hawthorne Race Track to see the Illinois Derby. I won $17. ;)
And the best part? As I type this, I'm sitting on the back porch of a Palm City, FL home, staring out into a beautiful lake, in 75 degree weather. When his appointment was switched, we decided to hop into the car, (we brought Godiva), to take a spontaneous road trip to visit his brother Pat and his sister-in-law Cheri before he went in for transplant. How cool is that?? We've had a blast driving down here. We stopped in Nashville, TN and saw Music City and had some traditional Tennessee bbq. Next, we headed to Savannah, GA and hung out a bit on the River Walk, (what a beautiful city. I would love to go back and spend more time there). Our next stop was in Melbourne, FL where we stopped at Bonefish Willy's to have some fresh oysters & beer...right on the water,(it was delightful). Then, we hightailed it to Palm City, FL to surprise his brother. Cheri, (Pat's wife) knew we were coming, but Pat did not so it was a huge surprise to him to see Mark walking up to his front door with Godiva and myself. It was a pretty cool moment. After only having heard (and read) the crazy stuff his brother had been through, I'm sure it did Pat's soul good to see Mark, beaming smile and all, walking up his front porch to greet him. I personally got a bit choked up to tell ya the truth.
We hung out last night with Pat & Cheri and Mark made a delicious dinner of fresh shrimp & steak, with asparagus and a caprese salad. The four of us drank wine and played poker and laughed...a lot. It was truly a lovely time. Pat & Cheri's house is so pretty and homey and just plain relaxing. Godiva & their dog, Bailey get along for the most part, aside from a few tense moments, it's been totally fine. Godiva almost immediately went for a swim, and I got it on video, (trying to figure out how to get it uploaded here...will post as soon as that happens). :)
I think today's plan might either be golf or the beach, not sure...who cares though, we're on vacation right? Mark and Pat and the dogs are fishing off of the dock now, what a lovely time.
Will keep you all updated as the days get closer to transplant. Mark's in amazingly great spirits, and he is still in his ass kicking mindset, which I believe makes all the difference in the world.
Love to you all.
-Leslie & Mark
Some pix and a video:
Mark at one of the Sox games we went to, wearing the Rockies windbreaker that his dad sent him from Vegas:
Mark, as happy as can be after eating some fresh oysters and drinking some beer at Bonefish Willy's in Melbourne, FL:
Me, (also after oysters), at Bonefish Willy's in Melbourne, FL...good shot by Mark, with his cell phone!!:
Mark & Pat, all smiles!!
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