Hey everyone, it's been a couple weeks since I wrote. The last trip to Dana Farber was one to see about the lack of sleep and the issue with the tingling in the fingers and hands. They fixed that by taking me off all the drugs for diabetes. That was great news. I felt better immediately and starting sleeping like a champ for the next 4 days. Then Tuesday hit and all hell broke loose on me.
It was Tuesday afternoon and my throat felt all congested most of the day. I commented to Denise that it felt like it was closing up on me all day. Later that afternoon I was alone in the house and went in to use the bathroom. I coughed as I was walking down the hall and the next thing I knew it was me, a small towel on the floor and the Standard Toilet stamp staring me in the face. Holy cow I thought my toes were going to come shooting out my throat I was in there so long. Other than an excellent ab workout, there was nothing good about this little episode....except that it was probably the easiest of the next 10 days.
I started getting sick once a day through that week into the weekend. Fortunately that following Monday there was a change to the routine so I knew my body was at least doing something. Yeah, I started throwing up multiple times each day instead of just once. I couldn't eat, drink, nothing. I was back 100% on the feeding tube and hating it.
I went to Dana Farber on October 10th and they said my throat looked great, my red and white blood cells were acting ahead of schedule to hit normal levels, and they couldn't believe how little pain meds I was using. All good. Unfortunately nothing to make the throwing up stop.
That all lasted through about October 12th. Since then (today is the 17th) I have gotten sick every other day, BUT I am forcing the Ensure shakes and some food down my throat and fighting the urge to get sick every minute I do it. I'm sick of being out of the action. With the kids, work, social events, friends, you name it, I miss it. I have been to about 5 kids soccer games and basically nothing else. If I talk for more than 15 minutes my throat sends me running to the bathroom. It's been the most frustrating time only because I'm 9 weeks removed from treatments and I thought I'd be further along. I did just get a note from my west coast cancer partner Tom who said he kept his feeding tube in a long time past what he expected to as well. You just don't realize I guess how much your body went through and that it takes this long to recover.
What's more frustrating is i'm losing any muscle mass I had. Pretty soon my boss at work might have a shot at taking me out. This isn't a negative against him, he's a great guy, just a bit more of a southern gentleman that a brawler. If I lose to him in arm wrestling i'll cry! It has really broken me down as I feel tired and achy constantly now. I went for a walk yesterday and had to struggle to keep up with Denise. Did those of you who know Denise read what I just wrote! I HAD TO STRUGGLE TO KEEP UP WITH DENISE!!! Does that tell you how bad it's gotten? Usually when we walk I feel like I'm going to fall backwards we move so slow. Now it's like the Indy 500 for me. Argghhh!
Well, I've bitched long enough this time. My spirits stay strong thanks to my family and friends. I get my daily text from Jean, my constant emails from work friends, and texts and calls from my friends here at home checking in to see how all is. My brother is flying up from Florida next weekend so that will be great to see him, and any time I try to feel sorry for myself, I get constant reminders in the news and visits to Dana of just how good I have it.
By the way, November 5th is the test date to see if all this worked or not. Stay tuned, I hope to post something positive that night and start the transition from tired achy recovery patient to lively energetic survivor.
Thanks everyone. Your prayers, notes, calls and constant comments for me to stop being such a pansy keep me moving forward. Denise and my girls God Bless You, I love you, thank you for everything.
Jumping out to watch game 6 Bosox/Detroit. Cheers everyone and cherish everything you have.
Saturday, October 19, 2013
Sunday, September 29, 2013
More positive than negative now except for one bad week
Quick update for all you followers (and you all know I couldn't thank you more for supporting me). Things were going well up until Saturday the 22nd of September. I was eating one or two little meals a day and seeing definite progress. Then, Saturday night I went to go to bed and my fingers and toes started tingling and burning. My whole body was wired and I couldn't sit still. I was up the entire night like I had swallowed 10 Red Bulls before bed. I stayed up all day the next day, went to bed Sunday night and slept for less than one hour. Same issue. It continued all week. I literally slept for less than 5 hours over 4 nights. My body was wiped out but I couldn't sleep. Dana Farber called it peripheral neuropathy and told me to try a cream to help. It did nothing. So they had me come in Friday for a battery of tests.
Long story short, it may be tied to my blood sugar again but in a good way. They took me off all the insulin and overnight Lantus shots I had been doing to see how my blood sugar goes. I finally slept this Saturday night for 8 hours. Felt great. Hopefully this may be a sign that there is no diabetes and it was the drugs I was on that was causing all the sugar issues. That would be fantastic. All I know is sleeping felt so good.
While at Dana, they told me I dropped four more pounds, up to 42. I was ecstatic, right up until Jason told me it was all muscle I was losing, not fat. Oh. Well that stinks. However, I have been doing some 1.5-2 mile walks which he then said maybe it is burning some fat but I need to start eating more to maintain my weight before he will pull the feeding tube out. So, I need to start doing some shakes and get more in me. I want this tube out. As much as I appreciated having it, it's time to move forward and this is the one thing that keeps reminding me I am still recovering.
My throat is doing ok. Still hurts but I came off almost all the pain meds and they said I did that about 4 weeks ahead of time. Great. I like to hear I am ahead of most in recovery. The long walks he said are real good. The eating I still lag a little. It's tough but the taste buds are starting to come back and some foods are tasting good again. That's super exciting for me, trust me.
Eating more is going to be the key. To be able to exercise more, I need to get more in me. That's the key and what I am focused on now. The Dr's are really happy with the way it's going. I did get sick one day (wednesday) but I was fine right after so they said don't worry about it.
It's all positive now. Full steam ahead and I rest when I need to. I've learned to listen to that part of the recovery because if you rest when you need it you come back stronger the next day. If you don't, it sets you back which becomes a morale issue for me. I hate going backwards. I won't know if this all worked until early November when they do the scans, but from my perspective that's just a formality. All the prayers and hard work by Dana will not go unrewarded. I know I will be shown Cancer FREE in a month's time! The final hurdle!
I unfortunately don't have any real funny things to pass on. Lame week this week with lack of sleep. Things are moving positive everyone. You are a major reason for it. Though nobody seems to post to my blog I do get a lot of emails which is great. Never having been through something like this before for myself or close family member, I never really realized the power of positive support. You all have been amazing and I will never forget it.
Cheers for now. Thank you all.
Mark
Long story short, it may be tied to my blood sugar again but in a good way. They took me off all the insulin and overnight Lantus shots I had been doing to see how my blood sugar goes. I finally slept this Saturday night for 8 hours. Felt great. Hopefully this may be a sign that there is no diabetes and it was the drugs I was on that was causing all the sugar issues. That would be fantastic. All I know is sleeping felt so good.
While at Dana, they told me I dropped four more pounds, up to 42. I was ecstatic, right up until Jason told me it was all muscle I was losing, not fat. Oh. Well that stinks. However, I have been doing some 1.5-2 mile walks which he then said maybe it is burning some fat but I need to start eating more to maintain my weight before he will pull the feeding tube out. So, I need to start doing some shakes and get more in me. I want this tube out. As much as I appreciated having it, it's time to move forward and this is the one thing that keeps reminding me I am still recovering.
My throat is doing ok. Still hurts but I came off almost all the pain meds and they said I did that about 4 weeks ahead of time. Great. I like to hear I am ahead of most in recovery. The long walks he said are real good. The eating I still lag a little. It's tough but the taste buds are starting to come back and some foods are tasting good again. That's super exciting for me, trust me.
Eating more is going to be the key. To be able to exercise more, I need to get more in me. That's the key and what I am focused on now. The Dr's are really happy with the way it's going. I did get sick one day (wednesday) but I was fine right after so they said don't worry about it.
It's all positive now. Full steam ahead and I rest when I need to. I've learned to listen to that part of the recovery because if you rest when you need it you come back stronger the next day. If you don't, it sets you back which becomes a morale issue for me. I hate going backwards. I won't know if this all worked until early November when they do the scans, but from my perspective that's just a formality. All the prayers and hard work by Dana will not go unrewarded. I know I will be shown Cancer FREE in a month's time! The final hurdle!
I unfortunately don't have any real funny things to pass on. Lame week this week with lack of sleep. Things are moving positive everyone. You are a major reason for it. Though nobody seems to post to my blog I do get a lot of emails which is great. Never having been through something like this before for myself or close family member, I never really realized the power of positive support. You all have been amazing and I will never forget it.
Cheers for now. Thank you all.
Mark
Tuesday, September 17, 2013
I've turned a lively puppy into a champion snoozer!
I received a couple texts today asking why no blogging was going on and concerned it was a bad sign. It definitely was not a negative sign. I just forgot as I've been trying to get more involved in some work calls, kids homework, and some other house things. It ends up leaving me an exhausted and useless mess the rest of the day. Anyway, today is five weeks removed from the last radiation treatment and Denise and I went to Dana Farber to meet with Dr Haddad. It was funny, I said to him "I wasn't sure if you'd still me my Dr. now that you are a television star " (he was on the Jimmy Fund Telethon tv broadcast for 1/2 hour interview) he says, "that was on TV?". I looked at him and thought 'what the hell did you think all the tv cameras around you were for, am I sure I want this guy treating me????'. Turns out he was told it was for the radio telethon and he doesn't get the station that it was broadcast on so he had no idea it was being broadcast. He's been great so we'll give him a buy on that one.
Anyway, I was anxious to get in to see him. It had been three weeks since my last appointment and the past week had been really rough on me so I needed to see what was going on. I was back to getting sick a few days in a row and I was exhausted more than the prior week or two leading into the checkup. He checked me out pretty good and said he feels I am ahead of schedule on the healing and the eating that I have been able to do has helped things move along as well. The throat area he said is healing really nicely which was great to hear. As I mentioned I've been getting sick the past week and I was afraid I may be damaging it pretty bad. He said it looked good and my weight was holding ok (down 40lbs on the nickel so far). Now I need my taste buds to let me eat more regularly so I can really get moving. The only surprising thing was the time I still have ahead of me before I feel remotely normal. He kept talking in terms of 3 weeks to a month for each step of getting better. I have to start eating and need to go two weeks without using the feeding tube at all without losing a single pound before the tube comes out. Sounds easy but trust me, eating is so hard right now. Everything is disgusting the second it goes in. I can't wait till that is no longer the issue. Again he mentioned I need to allow time. It's still 3 or 4 weeks before the taste buds kick in good. Which means it's 6-8 weeks minimum before the tube comes out and I can really feel like a normal person and not a recovering cancer patient. And only then does my body really start to recover. Today I nap like a 90 year old with a sleeping disorder (don't worry Dad, you have a ways to go before 90 so I'm not making fun of you with this crack) I'm just not ready to be having my nap be the highlight of my day just yet.
Which leads us to today's blog heading. So we lost our family dog at the beginning of this year which was an awful event. We picked up a new puppy who we love but is quite energetic. If you question this comment I challenge you to stop by and come walking right in...and hold on to something that's anchored down. Or easier yet, ask my mom who ended up in the hospital when Shelby took her down on a recent visit. Well, since my recovery started a few weeks ago, Shelby has become more astute about what nap time is all about. She now lays flat on her belly outside my door when I head upstairs. She lets me go through my routine. Then, as I spin around to sit on the bid and lay down for the old afternoon duster, she springs up, takes one step leaps onto the bed, and this is no joke, jumps in the air and spins around so her back lands right agains mine just as I lay down. It's a flawless routine she has perfected over the past few weeks. Then I have to fight for my share of the sheets and it's lights out for a couple hours. Shelby snores like Denise so it actually keeps me company and provides me a common background noise for our nap.
A few updates on the non cancer side of things. I have been able to go to a couple of my girls games and it was great to see everyone. I still don't go to the away games since I get sick at the drop of a hat and can't risk the drive plus game times. That's the next step I can't wait to complete. The girls started school and love it. Denise is back to work and LOVES it!! Denise is back to work and I LOVE IT hahha! My parents are doing great and are at the front of my cheering section to beat this thing.
That's all for now. It's more than enough I'm sure. Thank you everyone for the prayers, the texts, the support and the offers. When I write this ending I always start to tear up a little because I know in my heart nobody realizes just how much what you do each day means to someone going through this. It's everything, believe me. Thank You.
Mark
Anyway, I was anxious to get in to see him. It had been three weeks since my last appointment and the past week had been really rough on me so I needed to see what was going on. I was back to getting sick a few days in a row and I was exhausted more than the prior week or two leading into the checkup. He checked me out pretty good and said he feels I am ahead of schedule on the healing and the eating that I have been able to do has helped things move along as well. The throat area he said is healing really nicely which was great to hear. As I mentioned I've been getting sick the past week and I was afraid I may be damaging it pretty bad. He said it looked good and my weight was holding ok (down 40lbs on the nickel so far). Now I need my taste buds to let me eat more regularly so I can really get moving. The only surprising thing was the time I still have ahead of me before I feel remotely normal. He kept talking in terms of 3 weeks to a month for each step of getting better. I have to start eating and need to go two weeks without using the feeding tube at all without losing a single pound before the tube comes out. Sounds easy but trust me, eating is so hard right now. Everything is disgusting the second it goes in. I can't wait till that is no longer the issue. Again he mentioned I need to allow time. It's still 3 or 4 weeks before the taste buds kick in good. Which means it's 6-8 weeks minimum before the tube comes out and I can really feel like a normal person and not a recovering cancer patient. And only then does my body really start to recover. Today I nap like a 90 year old with a sleeping disorder (don't worry Dad, you have a ways to go before 90 so I'm not making fun of you with this crack) I'm just not ready to be having my nap be the highlight of my day just yet.
Which leads us to today's blog heading. So we lost our family dog at the beginning of this year which was an awful event. We picked up a new puppy who we love but is quite energetic. If you question this comment I challenge you to stop by and come walking right in...and hold on to something that's anchored down. Or easier yet, ask my mom who ended up in the hospital when Shelby took her down on a recent visit. Well, since my recovery started a few weeks ago, Shelby has become more astute about what nap time is all about. She now lays flat on her belly outside my door when I head upstairs. She lets me go through my routine. Then, as I spin around to sit on the bid and lay down for the old afternoon duster, she springs up, takes one step leaps onto the bed, and this is no joke, jumps in the air and spins around so her back lands right agains mine just as I lay down. It's a flawless routine she has perfected over the past few weeks. Then I have to fight for my share of the sheets and it's lights out for a couple hours. Shelby snores like Denise so it actually keeps me company and provides me a common background noise for our nap.
A few updates on the non cancer side of things. I have been able to go to a couple of my girls games and it was great to see everyone. I still don't go to the away games since I get sick at the drop of a hat and can't risk the drive plus game times. That's the next step I can't wait to complete. The girls started school and love it. Denise is back to work and LOVES it!! Denise is back to work and I LOVE IT hahha! My parents are doing great and are at the front of my cheering section to beat this thing.
That's all for now. It's more than enough I'm sure. Thank you everyone for the prayers, the texts, the support and the offers. When I write this ending I always start to tear up a little because I know in my heart nobody realizes just how much what you do each day means to someone going through this. It's everything, believe me. Thank You.
Mark
Wednesday, September 4, 2013
Buckle up for The Roller Coaster of Recovery....and GO!
Boy this thing really runs the full range of physical and emotional peaks and valleys. I was on the phone yesterday with some people from work and felt great. I hadn't gotten sick in 3 days, my voice was strong, I felt pretty damn good actually. It was exactly 3 weeks from my last treatment. I thought, perfect, I'm on the uphill part now and it's all good now.
Almost as a backup to that belief, I got a call from Tom Stack out on the left coast who went through exactly what I am about a year ago and it was on my 3 week anniversary. I figured he was calling to say YOU MADE IT! However, though he was happy to hear I was doing well, he made it very clear that the roller coaster ride wasnt' over. 5 more weeks of bad and good fighting it out is what he said. And wouldn't you know it, BAM, he nailed it.
Last night I hit the bathroom at 2am and didn't leave for an hour. It was one of the worst bouts of stomach issues I've had since it started. All I could think was 3 clean days all washed away. But then Tom's input hit. Expect it. Move on. Get your rest and eat your food. So, that's what we'll keep doing going forward.
The eating part is really hard. Not so much from the pain perspective now but everything still tastes horrible. I mean horrible. Simple chicken soup broth tastes like 8 week old milk sitting in an opened glass container in the sun, in August. It's gross. It's making it hard to keep any strength. The proteins aren't getting in me fast enough and I can feel all the strength washing out slowly. That's my focus now. Eating to stay strong. It's the key to everything.
Denise received a call from her Uncle Johnnie (Father John) last night. He is a character. He was a missionary priest who worked in South America for years. He learned a lot out there, unfortunately playing tennis and playing fair were not two of them. Every time he came home we would play a couple times. I would let him win a few games, then he would start calling shots in even when they landed on his side of the net (on his return). He's always been a great person to talk to and has a great take on things when you have a chance to sit and talk with him. He offered up to Denise that he is praying for me so I know I have a little bigger slice of God working this with me now. How can I lose? In fact, if he could help me get through this recovery piece a little quicker I might be tempted to let him win a round of golf if he wants. Whatever it takes!!!
The kids start school tomorrow (Thursday) which is really late. I'll miss listening to them and having them about during the recovery. They have been the inspiration and a huge help to me throughout this thing. I can't wait to be back on my feet so we can get back to living life, not just living. I miss being part of their days in a substantive way. So much we did together between normal activities, soccer practice, school stuff. I miss it all and can't wait till spring when I'm back in the mix. For now, it just hurts not being able to be there.
Thanks again to all of you who continue to respond and post or email with updates on how you are doing, funny things you've heard about etc.. It helps and keeps my brain moving. Thanks to all of you for your support.
Cheers
mark
Almost as a backup to that belief, I got a call from Tom Stack out on the left coast who went through exactly what I am about a year ago and it was on my 3 week anniversary. I figured he was calling to say YOU MADE IT! However, though he was happy to hear I was doing well, he made it very clear that the roller coaster ride wasnt' over. 5 more weeks of bad and good fighting it out is what he said. And wouldn't you know it, BAM, he nailed it.
Last night I hit the bathroom at 2am and didn't leave for an hour. It was one of the worst bouts of stomach issues I've had since it started. All I could think was 3 clean days all washed away. But then Tom's input hit. Expect it. Move on. Get your rest and eat your food. So, that's what we'll keep doing going forward.
The eating part is really hard. Not so much from the pain perspective now but everything still tastes horrible. I mean horrible. Simple chicken soup broth tastes like 8 week old milk sitting in an opened glass container in the sun, in August. It's gross. It's making it hard to keep any strength. The proteins aren't getting in me fast enough and I can feel all the strength washing out slowly. That's my focus now. Eating to stay strong. It's the key to everything.
Denise received a call from her Uncle Johnnie (Father John) last night. He is a character. He was a missionary priest who worked in South America for years. He learned a lot out there, unfortunately playing tennis and playing fair were not two of them. Every time he came home we would play a couple times. I would let him win a few games, then he would start calling shots in even when they landed on his side of the net (on his return). He's always been a great person to talk to and has a great take on things when you have a chance to sit and talk with him. He offered up to Denise that he is praying for me so I know I have a little bigger slice of God working this with me now. How can I lose? In fact, if he could help me get through this recovery piece a little quicker I might be tempted to let him win a round of golf if he wants. Whatever it takes!!!
The kids start school tomorrow (Thursday) which is really late. I'll miss listening to them and having them about during the recovery. They have been the inspiration and a huge help to me throughout this thing. I can't wait to be back on my feet so we can get back to living life, not just living. I miss being part of their days in a substantive way. So much we did together between normal activities, soccer practice, school stuff. I miss it all and can't wait till spring when I'm back in the mix. For now, it just hurts not being able to be there.
Thanks again to all of you who continue to respond and post or email with updates on how you are doing, funny things you've heard about etc.. It helps and keeps my brain moving. Thanks to all of you for your support.
Cheers
mark
Monday, August 26, 2013
Hawkeye masterfully captures the emotional impact of horrific news
I am 9 days into the recovery period now and it has definitely continued to go downhill here in the early going. The sickness is pretty much daily at some level and some days it is just brutal. Denise and I had a review with our nurse practitioner today (Jason) and on the positive side, the weight is fairly stable, and he said we are nearing the end of the declining stage. He thinks another week (so day 16-20 range) we should start to stabilize.
The helplessness really kicks in now. As we discuss options and we come up with ways to make it not suck so bad, I have to laugh as I think of some of the options.
Option: "Just as you start throwing up, take this pill and see if it shortens the sickness time by a minute or so"....
Mark's view of this option..."look man, what do you want from me. You basically poisoned me 3 times then sent me on a 7 week vacation to Chernobyl. The treat being offered to me now is let's see if we can get my puking down from 15 minutes to 14 by trying these other drugs while I'm still in the process of hurling. Well hold me down and butter my biscuit again, where do I sign up for this!
Humor aside, I know and I trust all these people that they are doing everything they can, but at some point it does become a grin and bear it approach for the patient. When the Dr is literally trying to help me make 1 minute improvements to the problem, I need to step back and say "Doc, you are doing a great job, how about I let Mr Manhood step in here and save some of your efforts and I live through that extra minute?" If he had a cure or way to prevent the sickness, sure let's experiment away, but if I'm going to make this hard working angel of mercy waste his time on me to get 1 minute save, let's move on...
Outside of the sickness, everything else is pretty good. My energy goes away immediately still but tha's all a cause from the chemo. If I help Denise wash dishes I'm ready for a nap. The energy level due to the chemo is really decreased. Makes all the normal chores difficult to do.......Good thing we had kids!!!!! YAHOOOOO!!!
Who out there is a M*A*S*H fan. Probably most if not all. Well I was watching an episode where Hawkeye gets blinded by a flash of light while trying to light a heater for the nurses (of course if was for the nurses, this is Hawkeye after all). He is lying in bed and the Army's expert opthamologist is there helping him. At this point he has checked his eyes out, dressed the area, and now it is a time of wait and see if treatments worked (hmmm, where have I been involved in something like that). Of course everyone in the camp is around at this point but his truly best friend BJ is there as well. BJ says, "I'll stop by and see you again in a while as he gets up to walk away". Even with bandages on you can see the panic in Hawkeye as he reaches for BJ's hand and grabs it as tightly as he can and says, "BJ, BJ, BJ! at least a couple hundred times a day". BJ immediately abandons any attempt at a joke here, which he and Hawkeye normally would do based on their character type, because he sees and feels Hawk's panic and anxiety at this moment. He does two simple things, he steps closer to Hawk, and in a softer voice to make it more personal says, "I will Hawk, I will".
Why did this stick with me when normally this scene would have been a good one for a bathroom break, it's because I had this happen so many times with my friends throughout this process. When I first heard about it you all know what I went through from my first couple blogs. It wasn't fun. And many of you were there to say you were routing for me, call me if you need anything, if you want to vent just call me at any time and many other offers for support. And they all came rapid fire and were very sincere. What caught me in this scene was just how many BJ Honeycutt's I am lucky enough to call a friend vs all the background people that were standing around Hawkeye's bed but were clearly background only. It's the people that keep calling, writing, texting, sending cards and doing the little things that keep you fighting and looking forward to seeing or hearing from those people that are so important to you. And it's been everyone. I am flabbergasted at how everyone has stuck with me. I've been at this for 9 weeks now. I can barely stand myself for 9 weeks, how can all of you?
For example today I received a subscription to Patriots Football Weekly out of the blue. I also got a card today that explained who it came from. Thanks to the person responsible (I want to refrain from identifying people as it may make it feel like I don't appreciate everything that everyone is doing). I also received a gift card to North End Deli which is huge with the kids going back to school and needing all their lunch meats etc.. I received a prayer card from a cousin, about 10 separate texts asking what we needed help with, are the kids ready for school, any supplies, yard work etc. needed. This is 9 weeks later. But unlike 9 weeks ago when I would have missed the significance of everyone staying with me through the whole ordeal, I know the fear Hawkeye felt. The uncertainty, the lack of knowing what to expect, when to expect it, and how it ends (and the how it ends episode is still in draft remember...).
Even more important is I feel bad at times when people call to talk and I'm just not up to it. I feel bad. I always feel like if you found me important enough to take time out of your day, then damn it I should do anything I can to get my butt up and either come down to see you, get on the phone write or whatever it is you want. You all are the first to sense in my voice (or lack of voice) and are the first to say 'go get some rest, call me when you need something or just to talk. Just use me when you need to that's all I ask'. That's such a powerful message and please don't ever forget that. The offer to help is huge. Understanding that sometimes even a phone conversation is exhausting but leaving it out there at all times as an option is huge.
Thanks everyone. Your love is felt, I'm fighting the good fight with your help, and I intend to finish this like a well run EMC sales campaign, with a Victory at the end and celebration dinner that gets rejected if I try to expense it (sure I got a chuckle from my field folks)!
Cheers
Mark.
The helplessness really kicks in now. As we discuss options and we come up with ways to make it not suck so bad, I have to laugh as I think of some of the options.
Option: "Just as you start throwing up, take this pill and see if it shortens the sickness time by a minute or so"....
Mark's view of this option..."look man, what do you want from me. You basically poisoned me 3 times then sent me on a 7 week vacation to Chernobyl. The treat being offered to me now is let's see if we can get my puking down from 15 minutes to 14 by trying these other drugs while I'm still in the process of hurling. Well hold me down and butter my biscuit again, where do I sign up for this!
Humor aside, I know and I trust all these people that they are doing everything they can, but at some point it does become a grin and bear it approach for the patient. When the Dr is literally trying to help me make 1 minute improvements to the problem, I need to step back and say "Doc, you are doing a great job, how about I let Mr Manhood step in here and save some of your efforts and I live through that extra minute?" If he had a cure or way to prevent the sickness, sure let's experiment away, but if I'm going to make this hard working angel of mercy waste his time on me to get 1 minute save, let's move on...
Outside of the sickness, everything else is pretty good. My energy goes away immediately still but tha's all a cause from the chemo. If I help Denise wash dishes I'm ready for a nap. The energy level due to the chemo is really decreased. Makes all the normal chores difficult to do.......Good thing we had kids!!!!! YAHOOOOO!!!
Who out there is a M*A*S*H fan. Probably most if not all. Well I was watching an episode where Hawkeye gets blinded by a flash of light while trying to light a heater for the nurses (of course if was for the nurses, this is Hawkeye after all). He is lying in bed and the Army's expert opthamologist is there helping him. At this point he has checked his eyes out, dressed the area, and now it is a time of wait and see if treatments worked (hmmm, where have I been involved in something like that). Of course everyone in the camp is around at this point but his truly best friend BJ is there as well. BJ says, "I'll stop by and see you again in a while as he gets up to walk away". Even with bandages on you can see the panic in Hawkeye as he reaches for BJ's hand and grabs it as tightly as he can and says, "BJ, BJ, BJ! at least a couple hundred times a day". BJ immediately abandons any attempt at a joke here, which he and Hawkeye normally would do based on their character type, because he sees and feels Hawk's panic and anxiety at this moment. He does two simple things, he steps closer to Hawk, and in a softer voice to make it more personal says, "I will Hawk, I will".
Why did this stick with me when normally this scene would have been a good one for a bathroom break, it's because I had this happen so many times with my friends throughout this process. When I first heard about it you all know what I went through from my first couple blogs. It wasn't fun. And many of you were there to say you were routing for me, call me if you need anything, if you want to vent just call me at any time and many other offers for support. And they all came rapid fire and were very sincere. What caught me in this scene was just how many BJ Honeycutt's I am lucky enough to call a friend vs all the background people that were standing around Hawkeye's bed but were clearly background only. It's the people that keep calling, writing, texting, sending cards and doing the little things that keep you fighting and looking forward to seeing or hearing from those people that are so important to you. And it's been everyone. I am flabbergasted at how everyone has stuck with me. I've been at this for 9 weeks now. I can barely stand myself for 9 weeks, how can all of you?
For example today I received a subscription to Patriots Football Weekly out of the blue. I also got a card today that explained who it came from. Thanks to the person responsible (I want to refrain from identifying people as it may make it feel like I don't appreciate everything that everyone is doing). I also received a gift card to North End Deli which is huge with the kids going back to school and needing all their lunch meats etc.. I received a prayer card from a cousin, about 10 separate texts asking what we needed help with, are the kids ready for school, any supplies, yard work etc. needed. This is 9 weeks later. But unlike 9 weeks ago when I would have missed the significance of everyone staying with me through the whole ordeal, I know the fear Hawkeye felt. The uncertainty, the lack of knowing what to expect, when to expect it, and how it ends (and the how it ends episode is still in draft remember...).
Even more important is I feel bad at times when people call to talk and I'm just not up to it. I feel bad. I always feel like if you found me important enough to take time out of your day, then damn it I should do anything I can to get my butt up and either come down to see you, get on the phone write or whatever it is you want. You all are the first to sense in my voice (or lack of voice) and are the first to say 'go get some rest, call me when you need something or just to talk. Just use me when you need to that's all I ask'. That's such a powerful message and please don't ever forget that. The offer to help is huge. Understanding that sometimes even a phone conversation is exhausting but leaving it out there at all times as an option is huge.
Thanks everyone. Your love is felt, I'm fighting the good fight with your help, and I intend to finish this like a well run EMC sales campaign, with a Victory at the end and celebration dinner that gets rejected if I try to expense it (sure I got a chuckle from my field folks)!
Cheers
Mark.
Saturday, August 17, 2013
Recovery is a four letter word
Tuesday August 13th was my final radiation treatment and a whole lot changed just over the past weekend. I have heard first hand accounts of the immense changes that take place in the final few weeks from people who have been through the treatment and I have also witnessed it firsthand with some of the people I am taking this journey with. One example happened on my final chemo day (one week before final radiation for me). A fellow fighter was entering his final few days. His final radiation was going to be that wednesday. I saw him the previous Friday and he looked and felt really good. By the time I saw him MOnday it was a complete swing of events. First off, he didn't have the feeding tube put in. His doctor pushed to do it without. And now it was too late to put it it due to the chemo and radiation effects. So from Friday when I saw him, he began getting violently sick and got dehydrated over the weekend because he also couldn't eat since the vomiting was ruining his throat and ability to swallow. We saw him walk in MOnday and he looked horrible. Last we spoke with his wife it was IV every day to try and keep him hydrated. We only saw him one day since but the look we received from his wife was not a positive one by any stretch. That was my first glimpse into what was coming our way.
I met with Dr Margalit on Friday August 9th after radiation. There were now 2 radiation treatments left and that was it. I felt really good. I mean really good. I had energy, no nausea, no pain. Even Dr Margalit said she couldn't believe how well things had progressed. I was her poster child for the final week. Of course she said the next 3-4 weeks can have ups and downs but that's standard Dr Speak for anything right? I left our meeting feeling really good about the next month and future overall. Denise and I were planning on staying in Boston for the weekend based on what we were being told and had seen take place in the final week for peers in the program but I decided I wanted to head home. Denise really did too so it was an easy conversation. Our good friend Dan Martin scooped us up and off we went. That's when some odd things began to occur. I started to notice a lot of phlegm in my throat that didn't want to get out when I coughed. It got worse during the night. On Saturday, it continued to get worse to the point where I ended up getting sick Saturday night. Then again on Sunday night several times. I woke up at 6 monday morning for radiation and spent 20 minutes getting sick again. Now I had to go to radiation, have a mask strapped to my face holding me down unable to move, with the threat of throwing up a distinct concern. They did the radiation quickly as possible thank goodness and although I was sweating like pig during a sausage eating contest the whole time, I made it through.
We met with the team Monday after the radiation to discuss why I got sick all of a sudden and they suggested some tricks with robitussin. Monday night rolled around and that didn't work at all. In fact the robitussin seemed to initiate more sickness. Then Jason suggested one other approach and I took the pill given to me for when the MRI's were done that are supposed to relax me. That worked really well. I was good the rest of Monday, all Tuesday, Wednesday, Thursday, and Friday right up until 4pm. I was hoping to have a couple friends come by to watch a little of the pats preseason since I had been feeling ok, but that went to hell when out of the blue I ran to the bathroom and started getting sick all over again and it was all the mucus and blood from my throat all over again. Back to square one. I hadn't missed a pill in our new regiment so I had no idea what the problem was. It is very frustrating though because along with the sickness comes new pain, blood came out which means I ripped something open again which sets that back days in the healing process as well I would imagine.
As I write this it is Saturday morning and I had a second attack. My throat is on fire, my body aches from throwing up for 20 minutes with nothing much coming out, just a painful painful experience. I don't know how this eventually ends but I sure do hope it ends one way or the other soon. The ups and downs are brutal. Especially when the 'ups' are nothing more than "hey great, I went 4 hours without throwing up, what a great day!"
The good news to report is the Patriots did well from what little I saw, my girls have most of their school stuff ready early which will help as that is just around the corner, my weight is stabliized but I can tell I am losing muscle for sure. It's amazing how quickly it deteriorates just by not doing the normal stuff around the house, forget formal exercise.
I hope everyone else's summer is going really well. Please feel free to send me notes on your vacations. I'd love to hear what you all did for fun.
thanks
mark
I met with Dr Margalit on Friday August 9th after radiation. There were now 2 radiation treatments left and that was it. I felt really good. I mean really good. I had energy, no nausea, no pain. Even Dr Margalit said she couldn't believe how well things had progressed. I was her poster child for the final week. Of course she said the next 3-4 weeks can have ups and downs but that's standard Dr Speak for anything right? I left our meeting feeling really good about the next month and future overall. Denise and I were planning on staying in Boston for the weekend based on what we were being told and had seen take place in the final week for peers in the program but I decided I wanted to head home. Denise really did too so it was an easy conversation. Our good friend Dan Martin scooped us up and off we went. That's when some odd things began to occur. I started to notice a lot of phlegm in my throat that didn't want to get out when I coughed. It got worse during the night. On Saturday, it continued to get worse to the point where I ended up getting sick Saturday night. Then again on Sunday night several times. I woke up at 6 monday morning for radiation and spent 20 minutes getting sick again. Now I had to go to radiation, have a mask strapped to my face holding me down unable to move, with the threat of throwing up a distinct concern. They did the radiation quickly as possible thank goodness and although I was sweating like pig during a sausage eating contest the whole time, I made it through.
We met with the team Monday after the radiation to discuss why I got sick all of a sudden and they suggested some tricks with robitussin. Monday night rolled around and that didn't work at all. In fact the robitussin seemed to initiate more sickness. Then Jason suggested one other approach and I took the pill given to me for when the MRI's were done that are supposed to relax me. That worked really well. I was good the rest of Monday, all Tuesday, Wednesday, Thursday, and Friday right up until 4pm. I was hoping to have a couple friends come by to watch a little of the pats preseason since I had been feeling ok, but that went to hell when out of the blue I ran to the bathroom and started getting sick all over again and it was all the mucus and blood from my throat all over again. Back to square one. I hadn't missed a pill in our new regiment so I had no idea what the problem was. It is very frustrating though because along with the sickness comes new pain, blood came out which means I ripped something open again which sets that back days in the healing process as well I would imagine.
As I write this it is Saturday morning and I had a second attack. My throat is on fire, my body aches from throwing up for 20 minutes with nothing much coming out, just a painful painful experience. I don't know how this eventually ends but I sure do hope it ends one way or the other soon. The ups and downs are brutal. Especially when the 'ups' are nothing more than "hey great, I went 4 hours without throwing up, what a great day!"
The good news to report is the Patriots did well from what little I saw, my girls have most of their school stuff ready early which will help as that is just around the corner, my weight is stabliized but I can tell I am losing muscle for sure. It's amazing how quickly it deteriorates just by not doing the normal stuff around the house, forget formal exercise.
I hope everyone else's summer is going really well. Please feel free to send me notes on your vacations. I'd love to hear what you all did for fun.
thanks
mark
Saturday, August 10, 2013
Final Chemo treatment down, two radiations to go, then recovery mode!
Well, it's been a long 7 weeks, and we are nearing the home stretch for treatments. Only two left. Of course, as we get closer to the end of treatments, now the Doctors start laying out what post treatment is really going to be like. Basically a few weeks of lows before stabilizing, then have to start eating normally and get the taste buds back so I can get rid of this feeding tube. Today is day 4 after chemo (so saturday afternoon) and I am not doing so well. Seems like day 4 and 5 are the worst for me which coincides with the days I stop taking the steroids so it makes sense. I felt really good Thursday and Friday but today was a long one.
My throat is on fire as well which doesn't help but the new pain meds help. I just can't wait to get another month or two down the road to HOPEFULLY get some taste back, some energy back, and feel like a productive person (hold down your comments please) again.
But more importantly what's a week without an adventure involving another member of our family. This time it was our dog Shelby. She has been summering with her friend Ellie at my sister/brother in law's house and all was going great. Until this week when she got a little bite on the leg while playing. No biggie but just to make sure it wasn't going to turn into a bigger problem we had her go to the vet for a quick medicine treatment. Amazing the little things that go haywhire when you aren't around. Of course the vet sends messages that ellie needs to be quarantined and blah blah blah...how to make a mountain out of a molehill. All's well there so we move on.
I keep getting awesome letters/notes/gifts showing support and you have no idea how much that helps. People I don't know are following, people I barely know are sending thoughts and prayers, I have candles lit for me going in London, a couple in France, bunches here in the states. It's just amazing what people bring for encouragement on a daily basis. I received a button today (thanks Gina B) that says "This is what a Cancer Survivor looks like". I'm not necessarily the best model, but I'll be wearing it proudly once that statement is confirmed true!
Which leads us to the next phase. This whole time during treatment I went in with only one optional verdict which was cancer free at the end. I know it's going to take a long time to know for sure, but I sure still feel positive. There is no room for doubt in my mind as that just can get in the way of healing, right? From what I understand the first pictures are taken in 3 months to get an early read but truly knowing the outcome takes a year of it being gone. Not the most favorable of terms but terms we need to live by so let it be and bring it on.
Dr. Margolit was great in our meeting Thursday. She has been impressed with the positive approach and says she thinks Denise and I have gotten even more positive as the physical side has gotten tougher. I think the past two weeks were easier on me due to the side issues being fixed so for me it's been much easier mentally dealing with the chemo even as the radiation has kicked into high gear and wreaked havoc in my throat over that same time. Denise and I both love meeting with Dr Margolit and Susan. They never rush anything, they ask a million questions and make sure we aren't holding back any issues at all, and they are willing to deal with me which says a lot right there. Unbelievable people who have made this thing so much easier on me and Denise. They both just make you feel like your are family, not patients to them. It's just an incredible bond they create so seamlessly.
Dr Haddad who oversees the Chemo side of things and the overall progress along with Jason Glass who has been a godsend to us especially through the sugar issues are also great favorites of ours. Denise loves Dr Haddad's laugh when I'm able to get him to laugh which isn't as often as the others. I think he misses my sarcasm sometimes but he is still a fantastic Dr and very patient as well during our meetings. I couldn't have asked for better people or a better place to get treated for this life changing event than at Dana Farber. I hope nobody reading this ever needs to go, but if you do, PLEASE PLEASE do all you can to get into one of these top rated hospitals. The care is amazing.
Thank you all. Bending your ear once a week in this blog is my outlet. Your feedback has been my strength. I will continue to write, please continue to pray. It ain't over by a longhsot!
Cheers
mark
My throat is on fire as well which doesn't help but the new pain meds help. I just can't wait to get another month or two down the road to HOPEFULLY get some taste back, some energy back, and feel like a productive person (hold down your comments please) again.
But more importantly what's a week without an adventure involving another member of our family. This time it was our dog Shelby. She has been summering with her friend Ellie at my sister/brother in law's house and all was going great. Until this week when she got a little bite on the leg while playing. No biggie but just to make sure it wasn't going to turn into a bigger problem we had her go to the vet for a quick medicine treatment. Amazing the little things that go haywhire when you aren't around. Of course the vet sends messages that ellie needs to be quarantined and blah blah blah...how to make a mountain out of a molehill. All's well there so we move on.
I keep getting awesome letters/notes/gifts showing support and you have no idea how much that helps. People I don't know are following, people I barely know are sending thoughts and prayers, I have candles lit for me going in London, a couple in France, bunches here in the states. It's just amazing what people bring for encouragement on a daily basis. I received a button today (thanks Gina B) that says "This is what a Cancer Survivor looks like". I'm not necessarily the best model, but I'll be wearing it proudly once that statement is confirmed true!
Which leads us to the next phase. This whole time during treatment I went in with only one optional verdict which was cancer free at the end. I know it's going to take a long time to know for sure, but I sure still feel positive. There is no room for doubt in my mind as that just can get in the way of healing, right? From what I understand the first pictures are taken in 3 months to get an early read but truly knowing the outcome takes a year of it being gone. Not the most favorable of terms but terms we need to live by so let it be and bring it on.
Dr. Margolit was great in our meeting Thursday. She has been impressed with the positive approach and says she thinks Denise and I have gotten even more positive as the physical side has gotten tougher. I think the past two weeks were easier on me due to the side issues being fixed so for me it's been much easier mentally dealing with the chemo even as the radiation has kicked into high gear and wreaked havoc in my throat over that same time. Denise and I both love meeting with Dr Margolit and Susan. They never rush anything, they ask a million questions and make sure we aren't holding back any issues at all, and they are willing to deal with me which says a lot right there. Unbelievable people who have made this thing so much easier on me and Denise. They both just make you feel like your are family, not patients to them. It's just an incredible bond they create so seamlessly.
Dr Haddad who oversees the Chemo side of things and the overall progress along with Jason Glass who has been a godsend to us especially through the sugar issues are also great favorites of ours. Denise loves Dr Haddad's laugh when I'm able to get him to laugh which isn't as often as the others. I think he misses my sarcasm sometimes but he is still a fantastic Dr and very patient as well during our meetings. I couldn't have asked for better people or a better place to get treated for this life changing event than at Dana Farber. I hope nobody reading this ever needs to go, but if you do, PLEASE PLEASE do all you can to get into one of these top rated hospitals. The care is amazing.
Thank you all. Bending your ear once a week in this blog is my outlet. Your feedback has been my strength. I will continue to write, please continue to pray. It ain't over by a longhsot!
Cheers
mark
Tuesday, August 6, 2013
How can I get Mark to take his pain meds???? Week 6 of treatment...
I have met quite a few fellow patients going through treatments very similar to mine. One thing I have noticed is the ones who are on the pain "patch" and oxycodone are walking around like zombies. They are all hunched over, don't say a word to anyone, and their spouses keep talking about how mean they have become due to all the meds. Now, I would love to have a good excuse to yell at Denise, but I'm really more concerned about the other drawback of the pain meds....constipation! I haven't been taking the pain meds when I probably should because of these two issues. I figured the less I take, the quicker the recovery will be. Denise has been pushing me, with the Dr's, to up the pain meds. This leads us to Saturday night and the devious plan Denise rolled out to ensure I take the medication...
It's 12:30am and I wake up for my multi night excursion to the bathroom. I unhook the pump, head in to the bathroom, and prepare for a quick hit. I look down and the water in the toilet seems low. First thought is one of my 'princesses of the pottie' stuffed too much paper in and we are clogged. So a quick calculation is done using the following information:
100% - Chance that the toilet is clogged
5% - Chance that it will unclog itself when I flush
95% - Likelihood I will need the plunger which is downstairs to fix the impending disaster
12:30am - Time at night and I am bloody tired
Quickly reviewing these items tells me that it is 12:30 at night so let's flush and hope! WRONG decision!
So I'm now running downstairs with my feeding tube bouncing all over the place. I run and grab the plunger and shoot back upstairs. Gotta beat the flood, gotta beat the flood, gotta beat the flood!!!!
I run into the bathroom and plant my left foot on the ceramic tile floor that is now under an inch of water. Let's review this sentence. 240 pounds running and planting onto a submerged piece of ceramic tile. You may all see where this one is heading in a hurry. I stepped about 2 feet into the bathroom, went horizontal and airborne until my foot hit the far wall and I crashed in a pile onto the floor. I landed flat on my back, thank goodness kept my head up, and the crash woke Denise up. I got up and plunged to get the toilet to stop and then threw a bunch of towels down with Denise. Once we finished picking up the water, Denise looked at me, smiled a crooked smile, and said, "you might want to take your pain meds now". She's good. She's very good. Checkmate.
Fortunately I woke up with nothing more than a bruise and a stiff neck. Could have been worse if I hadn't been on this new diet plan that shed 36 pounds off me last we checked.
The good news is we are running out of time for things to happen to me. Always a silver lining behind every cloud! I am writing this Monday night August 5th. I have 6 radiation treatments left and one chemo treatment tomorrow to go through. Then the long recovery road begins. YES!!!
Denise told me a great story I'd like to share about me oldest daughter Corinne. They were out running errands Friday night. Denise asks her where she would want to take a vacation because we want to do a family trip together since this summer has been so bad. Corinne, without missing a beat says, "well, I know Daddy doesn't feel good, but I've been having a great summer!" You have to love the honesty. She's been with her friends and cousins throughout this so when you look at it that way, I guess she is having a blast. That makes me feel great. Denise and I have always stayed upbeat with them and they have been great through this whole thing.
Quick update on the reason I started this blog. Time for a Cancer update. Last week was my best as far as how I have felt. Some ups and downs but the blood sugar being under control has been huge. No more weak knees, dizzy spells, nausea etc.. Like a rollercoaster however, you can't have an up without a down just around the corner. Friday night my throat started hurting and by Saturday afternoon it was the most severe pain I have felt when trying to swallow. It was expected and I knew it was coming, but boy did it come quickly and with a vengeance! So now it's the pain patch on one arm and oxy every 4 hours to boot. I'm on my way to the store for a gallon of prune juice....remember my second fear...
To wrap up this week I need to give an incredibly heart felt thank you to all the Pan Mass riders I had the privilege to cheer for this week. And most specifically to one of my dearest friends who was riding it, Mark Buron. Mark lost his mother to Cancer some years ago and he and a group of his friends ride this each year and have the names of family and friends on their t-shirt. I hate to say it, but I made the shirt this year and couldn't be more thankful to them. I went to the church off of Old Post road in North Attleboro. I was cheering on the riders when I saw Mark and his friends approaching. Dave Hughes was with him and I have met Dave several times. Another really great guy. Unlike prior years that I've gone to greet them either at the finish or at the church, this time really meant something tome personally. As I watched the riders go by, I couldn't help but flash back to the PMC murals at the hospital, the amount of money raised by the Challenge which goes to Cancer research to help kill this bastard of a disease. I was definitely feeling somewhat emotional when I finally saw Mark riding up and he pulled to the side to say hi. That's when my emotions overcame me for the first time since I started treatments. Everything just came rushing in. The babies getting treatment, the wonderful people at the hospital and what they do day in and day out, the children, the breakthroughs, the cures and treatments available today due in large part to people like Mark that do these things to raise money to fight the fight. Just as he was riding up to say hi I recalled something Dr. Haddad said to me on the first day we met at the hospital. I discussed it in my first blog. He asked if I had any questions. I said yes, am I going to die. He said no. But more importantly we discussed the 50/50 odds the prior doctor shared with me. He said 5-10 years ago that would have been true. We have come a long way in 5 and 10 years due to research being done. This is due to Mark and people like him who do what they do each year and each day to get ready for the ride from donations to training. Without these efforts I could easily have been a coin flip away from being a statistic on a report but on the wrong side of that report. While I am a long way from knowing if this disease is cured in my specific case, the odds that I have now are astronomically better due to what all these riders are doing. Simply put, I lost it. I tried to pull the weather in to the conversation to cover it but it didn't help. All I could picture was 50/50 on one side of the tug of war rope and 90+ % on the other side with Mark's team on that side of the rope pulling with every fiber of their being. Thank You Mark and your entire team. God Bless every one of you that take this challenge on. Please know your efforts are appreciated by patients, nurses, doctors and those touched by cancer every day.
Thanks for the support everyone. We are almost into recovery mode which has 2-3 weeks of what the Dr. called today the most challenging time of the process before it gets better. Please stick with me. Your support means everything.
Cheers
mark
It's 12:30am and I wake up for my multi night excursion to the bathroom. I unhook the pump, head in to the bathroom, and prepare for a quick hit. I look down and the water in the toilet seems low. First thought is one of my 'princesses of the pottie' stuffed too much paper in and we are clogged. So a quick calculation is done using the following information:
100% - Chance that the toilet is clogged
5% - Chance that it will unclog itself when I flush
95% - Likelihood I will need the plunger which is downstairs to fix the impending disaster
12:30am - Time at night and I am bloody tired
Quickly reviewing these items tells me that it is 12:30 at night so let's flush and hope! WRONG decision!
So I'm now running downstairs with my feeding tube bouncing all over the place. I run and grab the plunger and shoot back upstairs. Gotta beat the flood, gotta beat the flood, gotta beat the flood!!!!
I run into the bathroom and plant my left foot on the ceramic tile floor that is now under an inch of water. Let's review this sentence. 240 pounds running and planting onto a submerged piece of ceramic tile. You may all see where this one is heading in a hurry. I stepped about 2 feet into the bathroom, went horizontal and airborne until my foot hit the far wall and I crashed in a pile onto the floor. I landed flat on my back, thank goodness kept my head up, and the crash woke Denise up. I got up and plunged to get the toilet to stop and then threw a bunch of towels down with Denise. Once we finished picking up the water, Denise looked at me, smiled a crooked smile, and said, "you might want to take your pain meds now". She's good. She's very good. Checkmate.
Fortunately I woke up with nothing more than a bruise and a stiff neck. Could have been worse if I hadn't been on this new diet plan that shed 36 pounds off me last we checked.
The good news is we are running out of time for things to happen to me. Always a silver lining behind every cloud! I am writing this Monday night August 5th. I have 6 radiation treatments left and one chemo treatment tomorrow to go through. Then the long recovery road begins. YES!!!
Denise told me a great story I'd like to share about me oldest daughter Corinne. They were out running errands Friday night. Denise asks her where she would want to take a vacation because we want to do a family trip together since this summer has been so bad. Corinne, without missing a beat says, "well, I know Daddy doesn't feel good, but I've been having a great summer!" You have to love the honesty. She's been with her friends and cousins throughout this so when you look at it that way, I guess she is having a blast. That makes me feel great. Denise and I have always stayed upbeat with them and they have been great through this whole thing.
Quick update on the reason I started this blog. Time for a Cancer update. Last week was my best as far as how I have felt. Some ups and downs but the blood sugar being under control has been huge. No more weak knees, dizzy spells, nausea etc.. Like a rollercoaster however, you can't have an up without a down just around the corner. Friday night my throat started hurting and by Saturday afternoon it was the most severe pain I have felt when trying to swallow. It was expected and I knew it was coming, but boy did it come quickly and with a vengeance! So now it's the pain patch on one arm and oxy every 4 hours to boot. I'm on my way to the store for a gallon of prune juice....remember my second fear...
To wrap up this week I need to give an incredibly heart felt thank you to all the Pan Mass riders I had the privilege to cheer for this week. And most specifically to one of my dearest friends who was riding it, Mark Buron. Mark lost his mother to Cancer some years ago and he and a group of his friends ride this each year and have the names of family and friends on their t-shirt. I hate to say it, but I made the shirt this year and couldn't be more thankful to them. I went to the church off of Old Post road in North Attleboro. I was cheering on the riders when I saw Mark and his friends approaching. Dave Hughes was with him and I have met Dave several times. Another really great guy. Unlike prior years that I've gone to greet them either at the finish or at the church, this time really meant something tome personally. As I watched the riders go by, I couldn't help but flash back to the PMC murals at the hospital, the amount of money raised by the Challenge which goes to Cancer research to help kill this bastard of a disease. I was definitely feeling somewhat emotional when I finally saw Mark riding up and he pulled to the side to say hi. That's when my emotions overcame me for the first time since I started treatments. Everything just came rushing in. The babies getting treatment, the wonderful people at the hospital and what they do day in and day out, the children, the breakthroughs, the cures and treatments available today due in large part to people like Mark that do these things to raise money to fight the fight. Just as he was riding up to say hi I recalled something Dr. Haddad said to me on the first day we met at the hospital. I discussed it in my first blog. He asked if I had any questions. I said yes, am I going to die. He said no. But more importantly we discussed the 50/50 odds the prior doctor shared with me. He said 5-10 years ago that would have been true. We have come a long way in 5 and 10 years due to research being done. This is due to Mark and people like him who do what they do each year and each day to get ready for the ride from donations to training. Without these efforts I could easily have been a coin flip away from being a statistic on a report but on the wrong side of that report. While I am a long way from knowing if this disease is cured in my specific case, the odds that I have now are astronomically better due to what all these riders are doing. Simply put, I lost it. I tried to pull the weather in to the conversation to cover it but it didn't help. All I could picture was 50/50 on one side of the tug of war rope and 90+ % on the other side with Mark's team on that side of the rope pulling with every fiber of their being. Thank You Mark and your entire team. God Bless every one of you that take this challenge on. Please know your efforts are appreciated by patients, nurses, doctors and those touched by cancer every day.
Thanks for the support everyone. We are almost into recovery mode which has 2-3 weeks of what the Dr. called today the most challenging time of the process before it gets better. Please stick with me. Your support means everything.
Cheers
mark
Saturday, July 27, 2013
Week 5 BREAKTHROUGH...wait a minute, what do you mean no more Pixie Stix!
5 weeks down as of today. 2 full weeks and then a Monday and Tuesday radiation till the treatments are over and recovery begins. Ya Freakin HOOOO!!
Now for the good news. As you all know from my incessant whining I haven't been doing so well with the treatments from an energy/nausea standpoint. Well, it hit the breaking point this past week. I went home for the weekend to see my cherubs, and spent 24X7 in bed unable to hang with them. If I ate, I felt like passing out, if I didn't eat, I felt like throwing up. I was disgusted and getting really flat out pissed at myself. So Monday rolls around and I head to radiation. All the nurses commented gently on how bad I looked. I said thanks, rolled back upstairs and tried to cope. Then came Tuesday. For a full week since chemo I had struggled and was close to passing out almost every day. Tuesday are my full day. 6:45am for blood work, then 3 dr meetings and IV fluids then the nutritionist and any other things that need doing. I'm in the waiting room for the blood work and they call my name. The nurse meets me in the room, checks my bracelet and says ok come with me. She turns and does a 4.3X40 time down the hall cuts the corner and disappears. I'm 20 feet behind dizzy and weak kneed trying to follow her. She stops and looks back and I said "is my 40 yard dash a new measurement you guys are taking or are you late for breakfast?" She looked at me, came rushing back and sat me down in a seat saying "ok, you stay here, i'm getting the head nurse". From that point forward Denise and I spent 12 hours getting wheeled around the hospital doing tests, getting shots, IV fluids etc.. When we checked out that night, I was heading home with Insulin and a test kit. The steroids they had given me was working wonders with my body and my sugar levels were through the roof. That seemed to help explain everything. The weight loss, the dizziness and fatigue. The nasty taste early on they think was due in large part to that. I wish we had caught that one earlier...or that I had complained earlier in the week so they would have checked all that. That's ok, things definitely got better, not great, but MUCH better after that. I went from total frustration and low morale to seeing some new light at the end of the rainbow. Now I just have to stay away from sour patch kids and pixie stix and make sure when I'm done I control this and don't have to stay on the insulin.
Thursday we met with Dr Margalit the radiology oncologist. She is the best. Great disposition, always positive, doesn't rush our conversations, and says I look 10 years younger without the goatee. And she has a great way of making the bad stuff seem manageable. As we get further along I keep saying, ok, now what about post treatment, how long is this going to continue to be bad. Each week she shares a little more of the detail and it sounds like it's going to be about 3-4 weeks before it starts to improve and then another couple months before the pain goes away and energy levels return. The last week of radiation she said really takes a toll plus the final chemo wipes out your blood cells. However, everything seems to be shrinking (tumors and me) so it's looking good so far. That's ok, with two weeks to go, let's get 'er done and move on with life.
I'm sure many of you are reading this and thinking how different this blog was. What happened to everything going wrong at every turn. Well, we did get to cap our LONG Tuesday of discovery off with a funny one. Denise and I are in the 12th hour at the hospital and we are wrapping up with Jason who is also simply an awesome person. He meets with me on Tuesday's to go over how I'm doing, blood work etc., and he was with me to figure out the sugar issues and get going on insulin. Anyway, it's been 12 hours, I'm tired, haven't eaten, and we just went over all the insulin injection directions etc.. As he is about to leave I said, "oh wait, I forgot to mention the feeding tube feels tight again, could you loosen it a little". "Sure" he says. He grabs his tweezers, goes to adjust the tube, and says, "actually Mark it's infected". "Of course it is Jason, of course it is". One more med added to the kitty!
LIke I said, 2 weeks left and we are running out of things to go wrong so BRING IT!
Cheers everyone, thanks for listening.
Now for the good news. As you all know from my incessant whining I haven't been doing so well with the treatments from an energy/nausea standpoint. Well, it hit the breaking point this past week. I went home for the weekend to see my cherubs, and spent 24X7 in bed unable to hang with them. If I ate, I felt like passing out, if I didn't eat, I felt like throwing up. I was disgusted and getting really flat out pissed at myself. So Monday rolls around and I head to radiation. All the nurses commented gently on how bad I looked. I said thanks, rolled back upstairs and tried to cope. Then came Tuesday. For a full week since chemo I had struggled and was close to passing out almost every day. Tuesday are my full day. 6:45am for blood work, then 3 dr meetings and IV fluids then the nutritionist and any other things that need doing. I'm in the waiting room for the blood work and they call my name. The nurse meets me in the room, checks my bracelet and says ok come with me. She turns and does a 4.3X40 time down the hall cuts the corner and disappears. I'm 20 feet behind dizzy and weak kneed trying to follow her. She stops and looks back and I said "is my 40 yard dash a new measurement you guys are taking or are you late for breakfast?" She looked at me, came rushing back and sat me down in a seat saying "ok, you stay here, i'm getting the head nurse". From that point forward Denise and I spent 12 hours getting wheeled around the hospital doing tests, getting shots, IV fluids etc.. When we checked out that night, I was heading home with Insulin and a test kit. The steroids they had given me was working wonders with my body and my sugar levels were through the roof. That seemed to help explain everything. The weight loss, the dizziness and fatigue. The nasty taste early on they think was due in large part to that. I wish we had caught that one earlier...or that I had complained earlier in the week so they would have checked all that. That's ok, things definitely got better, not great, but MUCH better after that. I went from total frustration and low morale to seeing some new light at the end of the rainbow. Now I just have to stay away from sour patch kids and pixie stix and make sure when I'm done I control this and don't have to stay on the insulin.
Thursday we met with Dr Margalit the radiology oncologist. She is the best. Great disposition, always positive, doesn't rush our conversations, and says I look 10 years younger without the goatee. And she has a great way of making the bad stuff seem manageable. As we get further along I keep saying, ok, now what about post treatment, how long is this going to continue to be bad. Each week she shares a little more of the detail and it sounds like it's going to be about 3-4 weeks before it starts to improve and then another couple months before the pain goes away and energy levels return. The last week of radiation she said really takes a toll plus the final chemo wipes out your blood cells. However, everything seems to be shrinking (tumors and me) so it's looking good so far. That's ok, with two weeks to go, let's get 'er done and move on with life.
I'm sure many of you are reading this and thinking how different this blog was. What happened to everything going wrong at every turn. Well, we did get to cap our LONG Tuesday of discovery off with a funny one. Denise and I are in the 12th hour at the hospital and we are wrapping up with Jason who is also simply an awesome person. He meets with me on Tuesday's to go over how I'm doing, blood work etc., and he was with me to figure out the sugar issues and get going on insulin. Anyway, it's been 12 hours, I'm tired, haven't eaten, and we just went over all the insulin injection directions etc.. As he is about to leave I said, "oh wait, I forgot to mention the feeding tube feels tight again, could you loosen it a little". "Sure" he says. He grabs his tweezers, goes to adjust the tube, and says, "actually Mark it's infected". "Of course it is Jason, of course it is". One more med added to the kitty!
LIke I said, 2 weeks left and we are running out of things to go wrong so BRING IT!
Cheers everyone, thanks for listening.
Monday, July 22, 2013
Post Chemo round 2 update....Denise is ready to join EMC
It's Monday July 22nd and it's been a week since I posted. Sorry for the delay for those of you following. We'll do all the complaining up front here and then get back to the positives. The weight is at 34lbs down and counting, BUT, the shakes are going in fast and helping slow the process. The chemo really wiped out my energy level this past week. I went home and saw the girls but even then I spent a lot of time resting which ticked me off but just seeing them and hanging out with them was great. I'm now through week 4, or better yet, into week 5. The last chemo is the still hanging out there and I can't say I'm looking forward to it but it is what it is so let's get to it...soon....!!
Everyone keeps asking how my girls and Denise are doing. Well, Denise is with me 24X7 so I'll let you decide how she is doing ;) Picture 24X7 with me just to start. Now picture 24X7 with me going through this. Yes, that's how she's doing. It's awesome having her here to help. All the little things just add up to so much every day. Thanks Denise!
My girls have been lucky enough to stay with their dearest friends Michelle and Emily who are also sisters so they are together during all this and hanging with their second family. Of course, it wouldn't be a family test without something happening to them as well. Our youngest Colette got sick a week ago last Thursday night and started throwing up. We weren't home, she was upset but never even told anyone that she was in a lot of pain in her throat and hear. She ended up with an earache and this past Friday my wife called her sister to see if she could take her to the Dr.. Turns out severe ear infection so she had gone a whole week in pain but didn't complain because she is tough (I need to learn a little here). Then today we get a call from the Dr. that says they did a strep test and yes, she has it.... Unbelievable. She fought swimmers ear, strep, stomach bug (twice actually) and never complained until her text on Friday that said her ear really hurt. She is a warrior! Now to see if I get strep...oh boy would that be fun. Having the girls with our friends taking care of them made even this easy to deal with because the girls are SO comfortable with them it's like their second home.
Ok, that's the lay of the land for us. Weight down, energy down, week 5 underway, getting there slowly but surely. Staying positive during it all thanks to everyone!
Why is Denise ready now to join my friends at EMC. Well, it was last Wednesday after chemo. The chemo is tough as I said. Wipes me out of energy. The throat is hurting. I'm resting a lot but never able to really sleep well so it just wears you out. So I'm sitting up just trying to harness a little energy and not be lying down. Doing a little work, typing some emails chatting with Denise. I said, "Denise, so far the hair hasn't fallen out (what I have anyway), that's good huh?" Denise looks at my face through the mirror on the desk, leans in and says "yeah, but you need to pluck your eyebrows". Really???
I laughed hard for the first time in a while and said, "now there's a blog headline for you"! We both laughed for a good couple minutes. It felt GREAT!
I do see a lot of the same people every day and the one constant is everyone deals a little differently. Most of the people have the feeding tubes and use them, but I have definitely been the person most reliant on the tube. The others lost their taste but it didn't make most stuff taste bad, just blah. I would kill for blah. You know I'm a big guy, I didn't get that way not liking food. It has really gotten tough because I can't go to eat with Denise any more as the smells/sight makes me sick now. At least before I could sit with her for a while. Hopefully that will come back around soon so I can at least keep her comfortable.
I say goodbye for now and thanks to everyone, and I mean everyone that has done so much to make this as easy as possible on my family, on me, and who have worked so hard to offer support to me and my family. I can't imagine how people do this without the support that I have received from all of you. Still a long way to go. I'm being told by the Dr.'s that the month or two post treatment is very difficult as well. Great. Let's get there soon!! Thanks everyone.
mark
Everyone keeps asking how my girls and Denise are doing. Well, Denise is with me 24X7 so I'll let you decide how she is doing ;) Picture 24X7 with me just to start. Now picture 24X7 with me going through this. Yes, that's how she's doing. It's awesome having her here to help. All the little things just add up to so much every day. Thanks Denise!
My girls have been lucky enough to stay with their dearest friends Michelle and Emily who are also sisters so they are together during all this and hanging with their second family. Of course, it wouldn't be a family test without something happening to them as well. Our youngest Colette got sick a week ago last Thursday night and started throwing up. We weren't home, she was upset but never even told anyone that she was in a lot of pain in her throat and hear. She ended up with an earache and this past Friday my wife called her sister to see if she could take her to the Dr.. Turns out severe ear infection so she had gone a whole week in pain but didn't complain because she is tough (I need to learn a little here). Then today we get a call from the Dr. that says they did a strep test and yes, she has it.... Unbelievable. She fought swimmers ear, strep, stomach bug (twice actually) and never complained until her text on Friday that said her ear really hurt. She is a warrior! Now to see if I get strep...oh boy would that be fun. Having the girls with our friends taking care of them made even this easy to deal with because the girls are SO comfortable with them it's like their second home.
Ok, that's the lay of the land for us. Weight down, energy down, week 5 underway, getting there slowly but surely. Staying positive during it all thanks to everyone!
Why is Denise ready now to join my friends at EMC. Well, it was last Wednesday after chemo. The chemo is tough as I said. Wipes me out of energy. The throat is hurting. I'm resting a lot but never able to really sleep well so it just wears you out. So I'm sitting up just trying to harness a little energy and not be lying down. Doing a little work, typing some emails chatting with Denise. I said, "Denise, so far the hair hasn't fallen out (what I have anyway), that's good huh?" Denise looks at my face through the mirror on the desk, leans in and says "yeah, but you need to pluck your eyebrows". Really???
I laughed hard for the first time in a while and said, "now there's a blog headline for you"! We both laughed for a good couple minutes. It felt GREAT!
I do see a lot of the same people every day and the one constant is everyone deals a little differently. Most of the people have the feeding tubes and use them, but I have definitely been the person most reliant on the tube. The others lost their taste but it didn't make most stuff taste bad, just blah. I would kill for blah. You know I'm a big guy, I didn't get that way not liking food. It has really gotten tough because I can't go to eat with Denise any more as the smells/sight makes me sick now. At least before I could sit with her for a while. Hopefully that will come back around soon so I can at least keep her comfortable.
I say goodbye for now and thanks to everyone, and I mean everyone that has done so much to make this as easy as possible on my family, on me, and who have worked so hard to offer support to me and my family. I can't imagine how people do this without the support that I have received from all of you. Still a long way to go. I'm being told by the Dr.'s that the month or two post treatment is very difficult as well. Great. Let's get there soon!! Thanks everyone.
mark
Tuesday, July 16, 2013
I saw you at club, you could spare it!
I start again by sharing some of the inspirational words I receive from all of you on a regular basis. Our title today was in reference to a conversation I had with a sales exec checking up on me. I was telling him how on Wednesday, 15 days after my first treatment, I was down 22 pounds and was unable to eat or drink anything so the feeding tube was going in. His response was one of the below:
a. Wow, that's tough, are you trying different foods to see what works?
b. Mark, you have to keep your strength up, we'll send you some chicken soup
c. I saw you at club, you could spare it.
And yes, the title gave it away so the suspense is non existent. But you have to love the dig. That was followed by "is your hair falling out yet or can you not tell if it is?" The caring delivery makes you tear up just a little doesn't it. I love it though. Great digs by great people mean a lot to me. For those of you following you know it's been a tough start. For whatever reason my taste buds failed me immediately and I have been unable to hold down water or food. It all tastes like ass. I have no better or more articulate way to describe it. I think those words do it justice. So Wednesday July 10th I went in for the feeding tube. I was actually excited to go. When I told Denise about my experience she wished she had gone and here's why.
So I'm sitting in the pre-op room when my nurse Kelly comes in. Nothing like a beautiful pre-op nurse to help settle you in to a gas filled feeding tube injection procedure right. Well, normally I would say yes, only Kelly wasn't all that beautiful. In fact, he hadn't shaved today so he was a little on the rough looking side today. I knew right there and then I was in for trouble. So then the two anesthesia guys come in. Fortunately, being confident in my masculinity I can say the following with no trepidation. These guys were McDreamy's of anesthesia. One was a resident about 23, the other in his early 30's. Both right out of GQ magazine. I told Denise she should have come, she missed out. Apparently I invited the nurses, Dr., and anesteshia guys over for a cookout if I live so you may all get a chance to meet them. In fact, let's hope you do get the chance as it's only a go if I live... So now we move into the operating room. I'm feeling no pain, next thing I know I'm awake and yapping up a storm trying to convince my new nurse to let me go early. I feel great. I keep prodding, tell her I have a work call in an hour so I'd love to be home for it, blah blah blah, eventually I get released. They wheel me to my brother in laws car and let me go over to the car. I needed to pick up my pain killers so I had to walk over to the Yawkey center and up to the pharmacy. I'm standing in line talking to the pharmacist who says he doesn't have my stuff to which I say....nothing. I break out into a cold sweat and dropped to my knees. I crawled to a couch and rolled onto it just about passed out. The good news is the guy got my drugs right away and a dr came out to see me. Once I got my composure back I got back in the car and headed home from Boston during rush hour. But, at least the worst was over right. Um, no, not really. We are driving home in stop and go traffic and as we move along my stomach starts to hurt a little. Now it's hurting a little more. Hey John, stop asking me questions for a minute, I'm in a little pain. Hey JOHN, GET ME HOME I THINK I'M DYING! Holy crap does this hurt. I couldn't breathe any longer. I called the hospital and told the nurse I was in extreme (I used 9.9 repeating as my pain gauge). She said 'someone will call in 20 minutes'. I said, "ok, have them ask for my brother in law, I'll be dead by then" So 2 minutes feels like an hour when they call back. The nurse says "is it time for the cookout". I said "not if I die, you know the deal". It was my operating nurse calling. She was cool. She said 'didn't they tell you how to release the pressure if it gets bad'. I said, "yes, just wanted to see how long I could go before I passed out from the pain!!! NO THEY DIDN't TELL ME THIS". I was just getting into the driveway so I got out, uncorked the top of the tube and undid the clamp and WOOSHHH, Mt Vesuvius came flying out of me. It was like a science experiment. I still felt crappy but the severe pain went away in a hurry. I felt bad for John, he was freaking out because I was white as a sheet, swollen and couldn't talk I was in so much pain. Sorry brother, thanks for the ride :)
I'm typing this sitting here Monday night and I do round two of chemo tomorrow. My weight is down but I've been pumping the shakes into me all weekend. No food being eaten so the shakes are my lifeline right now. The throat is manageable so far but that's supposed to end today. I shaved the goatee off last Thursday and the full mane should be sometime soon. Love all the emails and comments. Remember GOOGLE CHROME is needed to post. Stay tuned and thanks for listening! Mark
a. Wow, that's tough, are you trying different foods to see what works?
b. Mark, you have to keep your strength up, we'll send you some chicken soup
c. I saw you at club, you could spare it.
And yes, the title gave it away so the suspense is non existent. But you have to love the dig. That was followed by "is your hair falling out yet or can you not tell if it is?" The caring delivery makes you tear up just a little doesn't it. I love it though. Great digs by great people mean a lot to me. For those of you following you know it's been a tough start. For whatever reason my taste buds failed me immediately and I have been unable to hold down water or food. It all tastes like ass. I have no better or more articulate way to describe it. I think those words do it justice. So Wednesday July 10th I went in for the feeding tube. I was actually excited to go. When I told Denise about my experience she wished she had gone and here's why.
So I'm sitting in the pre-op room when my nurse Kelly comes in. Nothing like a beautiful pre-op nurse to help settle you in to a gas filled feeding tube injection procedure right. Well, normally I would say yes, only Kelly wasn't all that beautiful. In fact, he hadn't shaved today so he was a little on the rough looking side today. I knew right there and then I was in for trouble. So then the two anesthesia guys come in. Fortunately, being confident in my masculinity I can say the following with no trepidation. These guys were McDreamy's of anesthesia. One was a resident about 23, the other in his early 30's. Both right out of GQ magazine. I told Denise she should have come, she missed out. Apparently I invited the nurses, Dr., and anesteshia guys over for a cookout if I live so you may all get a chance to meet them. In fact, let's hope you do get the chance as it's only a go if I live... So now we move into the operating room. I'm feeling no pain, next thing I know I'm awake and yapping up a storm trying to convince my new nurse to let me go early. I feel great. I keep prodding, tell her I have a work call in an hour so I'd love to be home for it, blah blah blah, eventually I get released. They wheel me to my brother in laws car and let me go over to the car. I needed to pick up my pain killers so I had to walk over to the Yawkey center and up to the pharmacy. I'm standing in line talking to the pharmacist who says he doesn't have my stuff to which I say....nothing. I break out into a cold sweat and dropped to my knees. I crawled to a couch and rolled onto it just about passed out. The good news is the guy got my drugs right away and a dr came out to see me. Once I got my composure back I got back in the car and headed home from Boston during rush hour. But, at least the worst was over right. Um, no, not really. We are driving home in stop and go traffic and as we move along my stomach starts to hurt a little. Now it's hurting a little more. Hey John, stop asking me questions for a minute, I'm in a little pain. Hey JOHN, GET ME HOME I THINK I'M DYING! Holy crap does this hurt. I couldn't breathe any longer. I called the hospital and told the nurse I was in extreme (I used 9.9 repeating as my pain gauge). She said 'someone will call in 20 minutes'. I said, "ok, have them ask for my brother in law, I'll be dead by then" So 2 minutes feels like an hour when they call back. The nurse says "is it time for the cookout". I said "not if I die, you know the deal". It was my operating nurse calling. She was cool. She said 'didn't they tell you how to release the pressure if it gets bad'. I said, "yes, just wanted to see how long I could go before I passed out from the pain!!! NO THEY DIDN't TELL ME THIS". I was just getting into the driveway so I got out, uncorked the top of the tube and undid the clamp and WOOSHHH, Mt Vesuvius came flying out of me. It was like a science experiment. I still felt crappy but the severe pain went away in a hurry. I felt bad for John, he was freaking out because I was white as a sheet, swollen and couldn't talk I was in so much pain. Sorry brother, thanks for the ride :)
I'm typing this sitting here Monday night and I do round two of chemo tomorrow. My weight is down but I've been pumping the shakes into me all weekend. No food being eaten so the shakes are my lifeline right now. The throat is manageable so far but that's supposed to end today. I shaved the goatee off last Thursday and the full mane should be sometime soon. Love all the emails and comments. Remember GOOGLE CHROME is needed to post. Stay tuned and thanks for listening! Mark
Tuesday, July 9, 2013
Week 2 didn't go so swimmingly, for a few of us actually....
Had a great weekend down the cape with friends and family. I double dosed on one of the meds that actually makes me feel better so I would be up for the company. It messes bad with your kidneys so I was trying to take it easy on them earlier in the week. I really wanted to enjoy this weekend and did so thanks to modern chemistry.
My sister in laws and four close family friends came down and stayed at a hotel near our cottage. During the day they all hung at the beach and I rested so at night I could hang out and share in the laughs. Everybody was awesome and it felt great to feel good (thanks again mr decadron) for a couple days. We cooked at the cottage and the kids all had a blast as well. On one of the days I was able to take them all out tubing and that's when the adventure all began.
My chief soup architect Mike Pothier set the tone early in the morning when, after stepping on the boat said, "I'm not really a boating guy, not real strong in the water". My thought was, "well, the good news is you don't need to be good in the water if you stay on the boat". Ah, if only I said that out loud!
All the kids had jumped in swimming and the current started floating them away. They all had life jackets on of course so it didn't seem to be a concern but a couple of the smaller girls were scared. So, with no regard for his own well being Mike leaped into the water to save the young ladies who were safely engaged with their coast guard approved life jackets. Mike, who you may recall isn't exactly Mark Spitz, suddenly realizes he forgot his life jacket. And this is where I must introduce you to Mrs Martin, our dear exuberantly excitable friend who Mike decided to turn into his own personal floatation device. After a quick dash over in the boat and a toss out of his life jacket, all was good, the kids jumped on board, and everyone was safe. Then the funny part, as we got the last person in the boat we looked at the Garmin depth finder which was flashing 3.6 feet. Mike is 6 feet at least. We laughed hysterically but as it turns out it was broken and we really were over their heads but it was still good for a laugh.
Thanks to all my friends and family for the break from the treatments. I'm paying the price now, but it sure was fun. And Andy, if you are reading this, thanks for the 3 unbelievable comebacks in cribbage. It's one thing to be down by over 15 and come back to win once, but THREE times in a row. Unheard of. Tough to swallow for our competition. Especially when the words SKUNK were muttered by our opposition. Forget skunk, how about a straight out win!
Now for a boring commercial reminder of what this blog is about. It's two weeks today. Once I come off the decadron it goes right downhill and I am back being unable to drink due to the taste buds being fried and everything tastes like swamp water. I've tried everything, every flavor, every temperature. It just won't go down. I am going in tomorrow, wednesday, and getting another IV as I am getting dehydrated again so I'm excited for that. Makes you feel like a champ once it's in you.
Also, the feeding tube surgery is tomorrow. That should help me since I can then put fluids right in me and not go through the dehydration issue as often. It makes it so hard to focus once it sets in. You feel exhausted and sick to your stomach all day long. I made it in the office yesterday but was wiped by 2:30pm.
Colette called me yesterday and said she washed the dishes and the counter so no germs would make me sick when I got home from work. What a girl! She's always looking out for me. Today Corinne hung with me and read while I did some work at home. Got my medicine and drinks when I needed something. I'll miss these two a ton when I'm in Boston during the toughest parts.
One last call out before signing off. This goes to any nurse, or anyone who wants to relay this to a nurse they know. You guys rock. I went in Monday morning really hurting. My throat fired up over the weekend for the first time and it felt like the worst strep ever all day and night. I told the nurse who then looked at my throat and said she would go get a Dr.. My Doc was out monday morning, so a new guy walks in, all fired up and says "I looked at your chart, it's too early for you to be in this much pain". Oh, ok then, it doesn't hurt after all jackass. I just stood there looking at him and said 'Is that a question or are you calling me a sissy?' The nurse says, "I think he has some thrush I could see which is early but that's why I called you". The Dr whips around and glares at her and says, "that's why I'm gonna look in his mouth, I'll tell you what's wrong". The nurse winked at me with a smile but I was pissed so I just said, "doc, she's just telling you what I told her, you want to look, here" and I opened my mouth as wide as I could. He says I don't see any thrush, then the nurse (Susan) jumped in and said 'Mark, maybe you should show him where it is' with a nice little side of sarcasm. I couldn't have been happier for her. He was a real tool. So I pointed to it and he said 'oh, just that, ok I'll get you a prescritption'. So I said, "Susan, you were spot on, thanks". Why do some of these Dr's think they are so far above the nurses. Not all, this was the first one. The others have been fantastic and seem to work really great with the nurses. But not this one. Anyway, hopefully that's my last interaction with him. I don't do well biting my tongue in those situations so it's best we keep our distance before he prescribes a nice barium enema for me...
Cheers for now. REMEMBER GOOGLE+ is needed to post!!
Thanks for the cards and letters everyone, and the Smoothie gift card Melissa!!
Had a great weekend down the cape with friends and family. I double dosed on one of the meds that actually makes me feel better so I would be up for the company. It messes bad with your kidneys so I was trying to take it easy on them earlier in the week. I really wanted to enjoy this weekend and did so thanks to modern chemistry.
My sister in laws and four close family friends came down and stayed at a hotel near our cottage. During the day they all hung at the beach and I rested so at night I could hang out and share in the laughs. Everybody was awesome and it felt great to feel good (thanks again mr decadron) for a couple days. We cooked at the cottage and the kids all had a blast as well. On one of the days I was able to take them all out tubing and that's when the adventure all began.
My chief soup architect Mike Pothier set the tone early in the morning when, after stepping on the boat said, "I'm not really a boating guy, not real strong in the water". My thought was, "well, the good news is you don't need to be good in the water if you stay on the boat". Ah, if only I said that out loud!
All the kids had jumped in swimming and the current started floating them away. They all had life jackets on of course so it didn't seem to be a concern but a couple of the smaller girls were scared. So, with no regard for his own well being Mike leaped into the water to save the young ladies who were safely engaged with their coast guard approved life jackets. Mike, who you may recall isn't exactly Mark Spitz, suddenly realizes he forgot his life jacket. And this is where I must introduce you to Mrs Martin, our dear exuberantly excitable friend who Mike decided to turn into his own personal floatation device. After a quick dash over in the boat and a toss out of his life jacket, all was good, the kids jumped on board, and everyone was safe. Then the funny part, as we got the last person in the boat we looked at the Garmin depth finder which was flashing 3.6 feet. Mike is 6 feet at least. We laughed hysterically but as it turns out it was broken and we really were over their heads but it was still good for a laugh.
Thanks to all my friends and family for the break from the treatments. I'm paying the price now, but it sure was fun. And Andy, if you are reading this, thanks for the 3 unbelievable comebacks in cribbage. It's one thing to be down by over 15 and come back to win once, but THREE times in a row. Unheard of. Tough to swallow for our competition. Especially when the words SKUNK were muttered by our opposition. Forget skunk, how about a straight out win!
Now for a boring commercial reminder of what this blog is about. It's two weeks today. Once I come off the decadron it goes right downhill and I am back being unable to drink due to the taste buds being fried and everything tastes like swamp water. I've tried everything, every flavor, every temperature. It just won't go down. I am going in tomorrow, wednesday, and getting another IV as I am getting dehydrated again so I'm excited for that. Makes you feel like a champ once it's in you.
Also, the feeding tube surgery is tomorrow. That should help me since I can then put fluids right in me and not go through the dehydration issue as often. It makes it so hard to focus once it sets in. You feel exhausted and sick to your stomach all day long. I made it in the office yesterday but was wiped by 2:30pm.
Colette called me yesterday and said she washed the dishes and the counter so no germs would make me sick when I got home from work. What a girl! She's always looking out for me. Today Corinne hung with me and read while I did some work at home. Got my medicine and drinks when I needed something. I'll miss these two a ton when I'm in Boston during the toughest parts.
One last call out before signing off. This goes to any nurse, or anyone who wants to relay this to a nurse they know. You guys rock. I went in Monday morning really hurting. My throat fired up over the weekend for the first time and it felt like the worst strep ever all day and night. I told the nurse who then looked at my throat and said she would go get a Dr.. My Doc was out monday morning, so a new guy walks in, all fired up and says "I looked at your chart, it's too early for you to be in this much pain". Oh, ok then, it doesn't hurt after all jackass. I just stood there looking at him and said 'Is that a question or are you calling me a sissy?' The nurse says, "I think he has some thrush I could see which is early but that's why I called you". The Dr whips around and glares at her and says, "that's why I'm gonna look in his mouth, I'll tell you what's wrong". The nurse winked at me with a smile but I was pissed so I just said, "doc, she's just telling you what I told her, you want to look, here" and I opened my mouth as wide as I could. He says I don't see any thrush, then the nurse (Susan) jumped in and said 'Mark, maybe you should show him where it is' with a nice little side of sarcasm. I couldn't have been happier for her. He was a real tool. So I pointed to it and he said 'oh, just that, ok I'll get you a prescritption'. So I said, "Susan, you were spot on, thanks". Why do some of these Dr's think they are so far above the nurses. Not all, this was the first one. The others have been fantastic and seem to work really great with the nurses. But not this one. Anyway, hopefully that's my last interaction with him. I don't do well biting my tongue in those situations so it's best we keep our distance before he prescribes a nice barium enema for me...
Cheers for now. REMEMBER GOOGLE+ is needed to post!!
Thanks for the cards and letters everyone, and the Smoothie gift card Melissa!!
Wednesday, July 3, 2013
Day 7 and my first follow up...Doc, you look like hell!
The first week went down yesterday in a not so stellar start to this whole thing. I was able to see my Dr for our weekly meeting and it started off a little funny. My Dr is a fairly young guy and very well dressed and well coifed. When he walked in he looked worn down. So, to save us all some time in the how do you do's and set it straight how things were I say, "morning doc, you look tired. Is my chemo treatment wearing you down? He laughed and said, 'let's focus on you for starters'. So I shot back, "the only way I want you focusing on me is on all cylinders, get some sleep before our next meeting so I feel like you're the man with a plan". He laughed and agreed, and we moved on to me. First he looks at my chart and says something is wrong with your weight. So I say, "great, cancer isn't enough for you, now you're gonna start with the fat jokes, real nice". 'No' he says, 'this can't be right, get on that scale for me'....'ok, let's go across the hall and get on that scale, well, i'm not happy at all with this, you are down 13 pounds in 7 days!'
Mark's response..."Doc, you have the worlds best diet plan going, we can fund cancer research with all the fat money you'll be getting from the Atkins people!" This he didn't find funny. He was not happy with me. Well sorry for feeling like crap, maybe it's all the poison you filled me with. He gave me an IV with some new stuff to try out and about 2 hours later I felt the best I had in the prior week. It gave me a ton of energy and so Tuesday night we had a visit from some friends and family and I ate like a horse for the first time. I definitely learned a key lesson, I have to let him know when things aren't going perfect. I was trying to suck it up and figured a little nausea is to be expected....now I now.
From an emotional standpoint last night was huge. I was really getting down on the process and how much I was hurting so early on. Now I know it was my pig headedness hurting myself. No longer baby. Those Doctors and nurses are going to get to know me pretty well coming up.
Today, Wednesday I already had a radiation treatment at 8 and I go back in for a second at 3. This way I can skip Friday. I said to my radiologist, "hey, if we can do two a days, how about we do two every Thursday and you can take some extra long weekends going forward?" Yeah, that was shot down pretty quickly. THough I have to give her credit. No more dilly dallying with the answers after our first meeting. She just says, "uh, no" now. If you recall it used to go more like:
Mark: dr, can I have a drink during 4th of July?
Dr: well, I think you may not be up to it
Mark: well, if I'm feeling ok I could right
Dr: well, your body will be under a lot of stress
Mark: Ok, but just a couple aren't gonna kill me right
Dr: well, i'd really prefer that.....
Mark: Dr, hold on. Let's cut to the chase. If the answer is no, say no. Otherwise we go with the Dumb and Dumber approach which says "so what your saying is that there's a chance!"
Dr: "ok, NO"
Mark Well there we go. Thanks.
The Dana Farber people again are unbelievable. The compassion they show is crazy. I saw an older woman today with a thick accent in a wheelchair by herself. I asked if she needed anything and you could see she was very independent and said she was fine. An admin nurse stopped by, knelt beside her and I heard her say she had her hair shaved off. She asked them to cut it and put a hat on her head and she didn't want to see it. It was clearly very impactful to her. The nurse stayed for 20 minutes sharing with her other stories and how everything will come back better than ever. As she walked by I said to her "I hope I get the same compassion when I shave off my thick mane!" The lady in the wheelchair may have peed a little by the time she finished laughing. It just amazes me the compassion and time these people devote to the soul, never mind the disease. Kudos to you all. God Bless You!
Has anyone seen my wife Denise? Day 5 after treatment
It's a muggy Sunday afternoon and I have to start off by asking, has anyone seen my wife Denise? I surely haven't, but it's all part of the master plan that I have very little control over...
But before we talk about the whereabouts of Denise, let's catch up on what an unbelievable supporting cast I have, and quite honestly, why I have been blessed with that supporting cast. I'm not even in the real throws of this thing and the support, emails, calls, food, labor etc., that has been offered or doled out to me so far is amazing. So amazing that I sat there thinking, DAMN, I must be the most liked person in the world...until it hit me. It isn't me. It's because I married one of the most liked people in the world. Well, if you can't be them, join them right? As long as I get to share in the bounty I'm willing to role with it!
My front shrubs got chopped today by my brother in law, thanks John, while my parents paid me a nice visit. It was great to see them, particularly upright unlike their last visit when my mother took a bad fall. I constantly receive support emails and calls from family and friends alike which help keep the positive energy going for sure. Finally, as I sat wondering what to eat to kill the queasy I was feeling, our great friends the Pothier's swung in with some homemade chicken soup which was the best gift EVER along with the French bread. It's the little things, but oh was it good! So good it got me off the couch and in front of the computer to do this entry.
Getting back to how it is that I have all of this unconditional support in my life. As I mentioned, my first reaction to all the support was it must be because I am the most liked person in the world. Then reality hit, and I knew it was all due to what started 30 years ago in a small mining town just south of the Dakota's. Well, make that in a small town just south of Milford, MA. I'll skip all the background and just get to the point. I tricked her, she married me. She gave me two beautiful girls along with two beautiful (??) attitudes. She gave me friends and family beyond anything I ever could imagine. I actually started to think about my work friends and that I must be the one who at least drove that support. Unfortunately they all know Denise as well and there goes that angle. So, I'm willing to live with the support that I am getting every day knowing it is all manufactured from one smart decision I made 21 years ago this month. Well played Mark, well played!
But before we talk about the whereabouts of Denise, let's catch up on what an unbelievable supporting cast I have, and quite honestly, why I have been blessed with that supporting cast. I'm not even in the real throws of this thing and the support, emails, calls, food, labor etc., that has been offered or doled out to me so far is amazing. So amazing that I sat there thinking, DAMN, I must be the most liked person in the world...until it hit me. It isn't me. It's because I married one of the most liked people in the world. Well, if you can't be them, join them right? As long as I get to share in the bounty I'm willing to role with it!
My front shrubs got chopped today by my brother in law, thanks John, while my parents paid me a nice visit. It was great to see them, particularly upright unlike their last visit when my mother took a bad fall. I constantly receive support emails and calls from family and friends alike which help keep the positive energy going for sure. Finally, as I sat wondering what to eat to kill the queasy I was feeling, our great friends the Pothier's swung in with some homemade chicken soup which was the best gift EVER along with the French bread. It's the little things, but oh was it good! So good it got me off the couch and in front of the computer to do this entry.
Getting back to how it is that I have all of this unconditional support in my life. As I mentioned, my first reaction to all the support was it must be because I am the most liked person in the world. Then reality hit, and I knew it was all due to what started 30 years ago in a small mining town just south of the Dakota's. Well, make that in a small town just south of Milford, MA. I'll skip all the background and just get to the point. I tricked her, she married me. She gave me two beautiful girls along with two beautiful (??) attitudes. She gave me friends and family beyond anything I ever could imagine. I actually started to think about my work friends and that I must be the one who at least drove that support. Unfortunately they all know Denise as well and there goes that angle. So, I'm willing to live with the support that I am getting every day knowing it is all manufactured from one smart decision I made 21 years ago this month. Well played Mark, well played!
So with the love story put to bed, where the heck is she you ask. Well, as I mentioned once earlier I have a fellow throat cancer friend who pointed out to me that he wished he had pushed his wife's friends to get her out a couple times a week to keep her sane during the treatments. So I quietly mentioned to some friends and her sisters, "hey, if you get a chance during the treaments, take Denise out for a drink now or then to keep her going through this ordeal, I'd really appreciate it..." BAM, gone the next day for 4 days in a row. Thursday night out for drinks with friends, Friday night out for drinks and then a band playing with our friend Vanessa at the Trinity in Norton, then BAM, off to the Cape with her sisters for the weekend. As the doors slammed closed each time I faintly gasped for air and tried to say before she left, 'just a little waaaater plllleeease"...alas, she was gone again.
That's ok. She's in for a hell of ride the next few weeks so live it up kid!! Karma baby, karma...
And I still have our dog Shelby who, when I'm home alone just curls up and keeps an eye on me all day long. When the kids come home she is a bundle of energy. I will post again on Wednesday after my Dr appointments to share the wealth. Thanks again.
By the way, I'm told you need google+ to post to my blog. Sorry for all the confusion people keep telling me about. Please keep reading, keep posting, and thanks for caring and sharing your thoughts!
Friday, June 28, 2013
Day 4 of treatments.
A slap in the face for sure...
It's day four and I really feel worse, unfortunately, than I thought I would this early on. I guess that means the chemo is kicking ass which is good. I was walking through the hospital going from the Dana Farber Center to the Yawkey center feeling like crap when a young girl no older than 1 year came by in a stroller with her mom. It really ripped at my heart seeing her whispy hair and the drawn look on her face. It just isn't fair, it just isn't right. I know at that point it made my simple little case of self importance melt away. The nausea I felt, the dizzy feelings seemed meaningless next to that little girl coming by on her way from radiation. I have thought of her many times since I saw her and without knowing it she has become an inspiration for me.
You see a lot at this clinic that really puts things in perspective. I have a beautiful and healthy family, extended family and friends, and a very positive outlook on the outcome of my disease. There are way to many people that don't have any of this to fall back on. I am now considering myself blessed with a small case of bad luck on the side. I'll take that with all your support any day of the week.
I was able to make it into work yesterday for a few hours and tie off with my team. Thanks for picking up the slack and even though I'm constantly reminded by my management team that there wasn't much to make up for, I know you guys are kicking butt and doing everything you can to cover. I appreciate it very much. It was good to see everyone again. I only lasted till about 2:30, but since I was in Boston at 7am, it sure felt like a full day.
Denise is heading in with me today to look at a place to stay closer to the city. I can't handle the travel already. I didn't think it would get to me this quickly but holy cow did it ever. The last few weeks they have a hotel near the hospital that has rates for patients so we are going to reach out to them today.
I am also bringing my Bob Seger CD to radiation. Yesterday was Eric Clapton. He's ok, but not when they are playing one long guitar solo for 10 minutes. Too much of a good thing. With Bob these sessions will fly by. I have one nurse who never heard of Bob Seger. First off, really? Second, I promised she will like him. All she knows about him is Tom Cruise danced in his underwear to one of his songs. She wasn't impressed. I told her that's his worst song ever so be ready.
On the negative side of things, day 5 and 6 I'm told is when the flu like symptoms kick in. That sounds like a nice topper to the nausea feeling I have most of the day, even with the meds.
Please post your name with the comments you leave. It's hard to tell on some of them who it is. Lots of codenames. Thanks for the posts, keep them coming, they are the best!
A slap in the face for sure...
It's day four and I really feel worse, unfortunately, than I thought I would this early on. I guess that means the chemo is kicking ass which is good. I was walking through the hospital going from the Dana Farber Center to the Yawkey center feeling like crap when a young girl no older than 1 year came by in a stroller with her mom. It really ripped at my heart seeing her whispy hair and the drawn look on her face. It just isn't fair, it just isn't right. I know at that point it made my simple little case of self importance melt away. The nausea I felt, the dizzy feelings seemed meaningless next to that little girl coming by on her way from radiation. I have thought of her many times since I saw her and without knowing it she has become an inspiration for me.
You see a lot at this clinic that really puts things in perspective. I have a beautiful and healthy family, extended family and friends, and a very positive outlook on the outcome of my disease. There are way to many people that don't have any of this to fall back on. I am now considering myself blessed with a small case of bad luck on the side. I'll take that with all your support any day of the week.
I was able to make it into work yesterday for a few hours and tie off with my team. Thanks for picking up the slack and even though I'm constantly reminded by my management team that there wasn't much to make up for, I know you guys are kicking butt and doing everything you can to cover. I appreciate it very much. It was good to see everyone again. I only lasted till about 2:30, but since I was in Boston at 7am, it sure felt like a full day.
Denise is heading in with me today to look at a place to stay closer to the city. I can't handle the travel already. I didn't think it would get to me this quickly but holy cow did it ever. The last few weeks they have a hotel near the hospital that has rates for patients so we are going to reach out to them today.
I am also bringing my Bob Seger CD to radiation. Yesterday was Eric Clapton. He's ok, but not when they are playing one long guitar solo for 10 minutes. Too much of a good thing. With Bob these sessions will fly by. I have one nurse who never heard of Bob Seger. First off, really? Second, I promised she will like him. All she knows about him is Tom Cruise danced in his underwear to one of his songs. She wasn't impressed. I told her that's his worst song ever so be ready.
On the negative side of things, day 5 and 6 I'm told is when the flu like symptoms kick in. That sounds like a nice topper to the nausea feeling I have most of the day, even with the meds.
Please post your name with the comments you leave. It's hard to tell on some of them who it is. Lots of codenames. Thanks for the posts, keep them coming, they are the best!
Wednesday, June 26, 2013
Nurse, can you shut her UP!
Holy cow can some people talk. And I'll get to that in a minute.
So I'm at at 4:30 this morning after a sleepless night heading in for my first 6 hour chemo drip with a side order of radiation at 6pm. I start the day at 6:30am with 3 hours of consultations followed by the drip followed by 3 hours of waiting for the radiation machine to melt my innards. My good friend Dan Martin mercifully drove me in at 5am to get there on time and my brother in law John picked my up at dusk when I was ready.
The consultations were typical any pain, any issues (yeah, I have this lump in my throat...), any questions. Take blood, urine, and my height and weight 3 times. I asked "do you expect me to shrink in height too? This is something I wasn't told ahead of time. Can you at least keep me over 6'?"
Ok, it's about 9:00 am and I sit down in the lazy boy to get my drip. Suzanne, my waitress, orders me up a couple fancy looking saline solutions and some potassium and magnesium sides to get me going before the chemo. Delicious. All is going just ducky. Nice view of a building going up across the street which was interesting, a helicopter landing on the hospital roof was cool to watch too. However what is really tickling my fancy is the 4 hour nap i'm about to drop on them while they drip in me.
But no. Lo and behold who sits next to me but Oprah Freaking Winfrey. Holy cow can this lady talk! The poor thing just had the chicken salad but it was 'just a touch on the dry side', that coupled with the chips that were too salty sent her right over the edge. And from that point on it was too warm, then too cold, another pillow please, take one of these away. I mean come on. Her husband and daughter were there too. I loved her father, he didn't say boo. He just looked at me like he wanted to say "if I stand near a window, would you mind pushing?" I smiled and he knew I was saying "tell you what, I'll hold your hand on the way down!"
That's alright, I snuck in a couple hours, did a couple work calls when awake, emails etc.. It's a long time to sit and do nothing I'll tell you. I continue to get emails from friends (and all my coworkers are in my friend category from this point forward who contact me with well wishes), and family.
Honestly right now all is good. As I write this I am two days out from the chemo and the past few hours I have just been overwhelmed with a tired feeling like where your legs feel like lead weights and your head is the same. They told me it was coming. They don't lie there. Nausea not horrible but enough to cause discomfort so far. The worst pain I felt was my first radiation trip they saddled me down, locked me in and THEN put in Rascal Flatts. I mean that's just pouring salt in the wound. I can't stand his voice. All was set straight day two when Mr Bob Seger paid a visit to the cd player!
I saw my much OLDER sister in law is joining the commentary in my blog and has threatened/promised to share funny stories about my past. I'm sure with the people reading this they will all cast a positive light on me since the people who control my career may be reading this as well. And did I mention how wonderful my entire management team is? Here's a good place to remind everyone.
One last funny one. I have to take a chill pill when i do radiation because i don't handle the whole locked down on the board with my face squished underneath a hard plastic shield that doesn't let you move an inch while someone 100 feet away shoots laser beams at me in a space invaders like game. They fed me a bunch of stuff in the IV as well today for nausea which makes you drowsy, then I took the other drug that does the same and headed down to radiation. Suzanne says, "who's driving you". I said "you're looking at him, why". Suzanne's says "but you just took two drugs to make you drowsy how can you drive". I said, you gave me the same drugs you gave that 120lb woman over there. I expect to be able to handle it. If I can't, I won't drive. I don't feel drousy, just takes the edge off. Then I pointed to the bottle that said, 'if driving, use caution' and smiled. All's good if the drug company says so right!
Thanks everyone for the awesome words of encouragement, the posts and the support. It helps, it helps, it helps!!! It helps more than you will ever know. And as this gets worse, which is is going to get, please keep em coming! Thanks.
Holy cow can some people talk. And I'll get to that in a minute.
So I'm at at 4:30 this morning after a sleepless night heading in for my first 6 hour chemo drip with a side order of radiation at 6pm. I start the day at 6:30am with 3 hours of consultations followed by the drip followed by 3 hours of waiting for the radiation machine to melt my innards. My good friend Dan Martin mercifully drove me in at 5am to get there on time and my brother in law John picked my up at dusk when I was ready.
The consultations were typical any pain, any issues (yeah, I have this lump in my throat...), any questions. Take blood, urine, and my height and weight 3 times. I asked "do you expect me to shrink in height too? This is something I wasn't told ahead of time. Can you at least keep me over 6'?"
Ok, it's about 9:00 am and I sit down in the lazy boy to get my drip. Suzanne, my waitress, orders me up a couple fancy looking saline solutions and some potassium and magnesium sides to get me going before the chemo. Delicious. All is going just ducky. Nice view of a building going up across the street which was interesting, a helicopter landing on the hospital roof was cool to watch too. However what is really tickling my fancy is the 4 hour nap i'm about to drop on them while they drip in me.
But no. Lo and behold who sits next to me but Oprah Freaking Winfrey. Holy cow can this lady talk! The poor thing just had the chicken salad but it was 'just a touch on the dry side', that coupled with the chips that were too salty sent her right over the edge. And from that point on it was too warm, then too cold, another pillow please, take one of these away. I mean come on. Her husband and daughter were there too. I loved her father, he didn't say boo. He just looked at me like he wanted to say "if I stand near a window, would you mind pushing?" I smiled and he knew I was saying "tell you what, I'll hold your hand on the way down!"
That's alright, I snuck in a couple hours, did a couple work calls when awake, emails etc.. It's a long time to sit and do nothing I'll tell you. I continue to get emails from friends (and all my coworkers are in my friend category from this point forward who contact me with well wishes), and family.
Honestly right now all is good. As I write this I am two days out from the chemo and the past few hours I have just been overwhelmed with a tired feeling like where your legs feel like lead weights and your head is the same. They told me it was coming. They don't lie there. Nausea not horrible but enough to cause discomfort so far. The worst pain I felt was my first radiation trip they saddled me down, locked me in and THEN put in Rascal Flatts. I mean that's just pouring salt in the wound. I can't stand his voice. All was set straight day two when Mr Bob Seger paid a visit to the cd player!
I saw my much OLDER sister in law is joining the commentary in my blog and has threatened/promised to share funny stories about my past. I'm sure with the people reading this they will all cast a positive light on me since the people who control my career may be reading this as well. And did I mention how wonderful my entire management team is? Here's a good place to remind everyone.
One last funny one. I have to take a chill pill when i do radiation because i don't handle the whole locked down on the board with my face squished underneath a hard plastic shield that doesn't let you move an inch while someone 100 feet away shoots laser beams at me in a space invaders like game. They fed me a bunch of stuff in the IV as well today for nausea which makes you drowsy, then I took the other drug that does the same and headed down to radiation. Suzanne says, "who's driving you". I said "you're looking at him, why". Suzanne's says "but you just took two drugs to make you drowsy how can you drive". I said, you gave me the same drugs you gave that 120lb woman over there. I expect to be able to handle it. If I can't, I won't drive. I don't feel drousy, just takes the edge off. Then I pointed to the bottle that said, 'if driving, use caution' and smiled. All's good if the drug company says so right!
Thanks everyone for the awesome words of encouragement, the posts and the support. It helps, it helps, it helps!!! It helps more than you will ever know. And as this gets worse, which is is going to get, please keep em coming! Thanks.
Friday, June 21, 2013
So just what do I have, and what's gonna happen?
This is my second entry and I figured I'd spend a little time talking about what I have and what the prognosis is. As I think about the last few weeks I realize just how crazy the ride has been and how unbelievably understanding so many people have been. So let's start from the top shall we...
I have throat cancer in the tonsil area as well as the lymph node on the left side of my neck. Funny thing when I tell people face to face everyone stares down to my neck like they expect to see some massive tumor poking out the side of my head. It's in there, trust me, i just have enough fat to cover it up so you can't tell. It's stage 3 cancer and it will be treated with Chemo and radiation simultaneously over 7 long weeks. The stage 3 piece brings up a funny story about the type of people I work with. Let me share...
I get a call from a senior sales executive who I have a long term connection to the other day when he heard the news. First off, I greatly appreciated the call from him. For the purpose of this story let's call him Johnny. Now, let's just say you don't get to his level without being able to tell a story or two, listen to your 'customer' (me in this case), and make the person you are talking to feel like you really understand what their issue is and convince them that you have just what they need. So as I am telling John about the diagnosis I mention it is stage 3. At that point, John says, "oh man, stage 3, that's great. I thought you were going to say it was stage 4, then I was going to tell you everything will be ok as I hang up the phone and say to myself 'oh shit, you are screwed'. I hadn't laughed about the cancer until that comment was made. It lifted me up at a time I really needed to be lifted, and here's why I needed just that comment...
On Tuesday when I was told I had cancer, the oncologist from Foxboro I mentioned earlier handed me my written report. As I scanned it I came across the line "survival rate for this diagnosis is 50%". I pointed to the line on the report as I showed Denise. My legs went weak and my head was spinning. I was still sure I would be on the right side of the 50, but holy freaking cow, if that coin lands on the wrong side, this isn't working out the way I had scripted it. After all, I still had plenty of burnt burgers to be had at Ed's house and plenty of boys to scare away from my daughters to be checking out of life so soon.
I went to work the next day Wednesday and didn't say anything until I wrote an email to five people just letting them know I may not be as responsive to their requests as I normally like to be and mentioned the diagnosis. From that point on, word spread and I was overwhelmed with well wishes and comments that everyone was going to be there to help fight the fight. It was in one word AWESOME. I sent the email and literally ran from my office because I knew Joan and Susan were going to see it and come bombing down to my office and I just wasn't prepared to talk about it just yet. Not at 50% survival rate I wasn't. I needed to learn more before I discussed it with them or anyone. Which leads me to share another story to show the type of people I work with and why they make it impossible to have anything other than a positive outlook on things.
It's Thursday morning and I see one of our executives in the hall who knows about the diagnosis (he was on my first email to the 5 people I support. He walks right into my personal space (so now everyone knows who he is, right), and just looks at me and says "so what the hell is going on". We talk, I tell him, he stares through me like he's reading my mind, and says "Dana Farber, good! They are the best, you'll beat this. Take whatever time you need, it's not like you add value here anyway", turns and walks away. If you work at my company and didn't know who I was talking about by my first comment, you sure as hell know now. Net is, the people I work with are uncompromising, opinionated, aggressive, and combative. But most importantly, they are some of the most caring people I know. If you are lucky enough to work with people like this then kudos to you for picking a great place to be. If you aren't, I am sorry but keep trying!
It's a little after 10am and I get the call I knew was coming. It's Joan and Susan. Two of the nicest (if they like you of course) people in the world. They are like my younger sisters to me. Anyway, I'm still at 50% but have been telling people it's 80% plus just to make everyone, including myself, feel better about the whole thing. I walk down to them and I get directed to an empty office. I get a hug from both of them and I start hearing sniffles (some were probably mine starting up to). I said "call me back when you pull yourself together" and went back to my office. I couldn't deal with that just yet. Not until I knew more. 10 minutes later I got summoned back to the principles office and we talked. Each time I talked about it, I felt more at ease discussing it. That's one thing I can tell anyone dealing with something like this. Talk about it. If you have to cry, cry. If you are like me and don't want to, then don't. Take a day or two, process it, and then share. It gets easier to accept as you go and discuss it more. To me that is good. Now you can focus not on the why me, or the how did it happen, but instead you focus on HOW DO WE KICK THE CRAP OUT OF THIS THING.
I mentioned in my last note I told my parents. I also called my brother to let him know and I struggled with that conversation because it was only the second person I told. My wife told her family and now knowledge of my battle has made its way to family, friends, and coworkers. For family members who read this, you know how quickly the cousin train runs when a Shruhan hops aboard! The outward show of caring, positive comments, and well wishes has been so energizing I can't tell you. I'm learning a lot about how much it means to have people just share a quick note or call to tell you they are thinking of you. I will be sure to do more of this myself, something I know I don't do enough.
So what's a good way to wrap up my second note. Oh yeah, I went to Dana Farber one week after hearing my 50/50 prognosis. The Dr at Dana Farber kept saying, "so if you choose to go with us". I finally cut him off after the third time and said 'hey doc, you had me at hello. can you stop saying that and get to the good stuff!' At which point he said, and I'll remember his voice ringing in my head forever, "well, it's going to be a long year, but I would say officially 80% success, unofficially 90% PLUS!!! He said a bunch of stuff after that, something about feeding tubes, severe pain, controlling pain blah blah blah. I said 'sorry, you had me at hello but you lost me at 90!' I'm in, let's get going....
So the adventure begins on the 25th with my first treatment. A 6-8 hour chemo drip with a side order of radiation! Bring it on and let's bake this thing! Talk with you all soon. Please leave comments, jokes, funny stories etc. on here and remind people to get on and share!!
I have throat cancer in the tonsil area as well as the lymph node on the left side of my neck. Funny thing when I tell people face to face everyone stares down to my neck like they expect to see some massive tumor poking out the side of my head. It's in there, trust me, i just have enough fat to cover it up so you can't tell. It's stage 3 cancer and it will be treated with Chemo and radiation simultaneously over 7 long weeks. The stage 3 piece brings up a funny story about the type of people I work with. Let me share...
I get a call from a senior sales executive who I have a long term connection to the other day when he heard the news. First off, I greatly appreciated the call from him. For the purpose of this story let's call him Johnny. Now, let's just say you don't get to his level without being able to tell a story or two, listen to your 'customer' (me in this case), and make the person you are talking to feel like you really understand what their issue is and convince them that you have just what they need. So as I am telling John about the diagnosis I mention it is stage 3. At that point, John says, "oh man, stage 3, that's great. I thought you were going to say it was stage 4, then I was going to tell you everything will be ok as I hang up the phone and say to myself 'oh shit, you are screwed'. I hadn't laughed about the cancer until that comment was made. It lifted me up at a time I really needed to be lifted, and here's why I needed just that comment...
On Tuesday when I was told I had cancer, the oncologist from Foxboro I mentioned earlier handed me my written report. As I scanned it I came across the line "survival rate for this diagnosis is 50%". I pointed to the line on the report as I showed Denise. My legs went weak and my head was spinning. I was still sure I would be on the right side of the 50, but holy freaking cow, if that coin lands on the wrong side, this isn't working out the way I had scripted it. After all, I still had plenty of burnt burgers to be had at Ed's house and plenty of boys to scare away from my daughters to be checking out of life so soon.
I went to work the next day Wednesday and didn't say anything until I wrote an email to five people just letting them know I may not be as responsive to their requests as I normally like to be and mentioned the diagnosis. From that point on, word spread and I was overwhelmed with well wishes and comments that everyone was going to be there to help fight the fight. It was in one word AWESOME. I sent the email and literally ran from my office because I knew Joan and Susan were going to see it and come bombing down to my office and I just wasn't prepared to talk about it just yet. Not at 50% survival rate I wasn't. I needed to learn more before I discussed it with them or anyone. Which leads me to share another story to show the type of people I work with and why they make it impossible to have anything other than a positive outlook on things.
It's Thursday morning and I see one of our executives in the hall who knows about the diagnosis (he was on my first email to the 5 people I support. He walks right into my personal space (so now everyone knows who he is, right), and just looks at me and says "so what the hell is going on". We talk, I tell him, he stares through me like he's reading my mind, and says "Dana Farber, good! They are the best, you'll beat this. Take whatever time you need, it's not like you add value here anyway", turns and walks away. If you work at my company and didn't know who I was talking about by my first comment, you sure as hell know now. Net is, the people I work with are uncompromising, opinionated, aggressive, and combative. But most importantly, they are some of the most caring people I know. If you are lucky enough to work with people like this then kudos to you for picking a great place to be. If you aren't, I am sorry but keep trying!
It's a little after 10am and I get the call I knew was coming. It's Joan and Susan. Two of the nicest (if they like you of course) people in the world. They are like my younger sisters to me. Anyway, I'm still at 50% but have been telling people it's 80% plus just to make everyone, including myself, feel better about the whole thing. I walk down to them and I get directed to an empty office. I get a hug from both of them and I start hearing sniffles (some were probably mine starting up to). I said "call me back when you pull yourself together" and went back to my office. I couldn't deal with that just yet. Not until I knew more. 10 minutes later I got summoned back to the principles office and we talked. Each time I talked about it, I felt more at ease discussing it. That's one thing I can tell anyone dealing with something like this. Talk about it. If you have to cry, cry. If you are like me and don't want to, then don't. Take a day or two, process it, and then share. It gets easier to accept as you go and discuss it more. To me that is good. Now you can focus not on the why me, or the how did it happen, but instead you focus on HOW DO WE KICK THE CRAP OUT OF THIS THING.
I mentioned in my last note I told my parents. I also called my brother to let him know and I struggled with that conversation because it was only the second person I told. My wife told her family and now knowledge of my battle has made its way to family, friends, and coworkers. For family members who read this, you know how quickly the cousin train runs when a Shruhan hops aboard! The outward show of caring, positive comments, and well wishes has been so energizing I can't tell you. I'm learning a lot about how much it means to have people just share a quick note or call to tell you they are thinking of you. I will be sure to do more of this myself, something I know I don't do enough.
So what's a good way to wrap up my second note. Oh yeah, I went to Dana Farber one week after hearing my 50/50 prognosis. The Dr at Dana Farber kept saying, "so if you choose to go with us". I finally cut him off after the third time and said 'hey doc, you had me at hello. can you stop saying that and get to the good stuff!' At which point he said, and I'll remember his voice ringing in my head forever, "well, it's going to be a long year, but I would say officially 80% success, unofficially 90% PLUS!!! He said a bunch of stuff after that, something about feeding tubes, severe pain, controlling pain blah blah blah. I said 'sorry, you had me at hello but you lost me at 90!' I'm in, let's get going....
So the adventure begins on the 25th with my first treatment. A 6-8 hour chemo drip with a side order of radiation! Bring it on and let's bake this thing! Talk with you all soon. Please leave comments, jokes, funny stories etc. on here and remind people to get on and share!!
Tuesday, June 18, 2013
"This is the worst part of my job"...how my battle with cancer began
Tuesday, May 21st
8 words. That's how this whole thing started. My ENT (ear nose throat) Dr. Siegel, who is a great guy regardless of the news he delivered to me, started his discussion with me and my wife Denise by saying, "This is the worst part of my job". The rest of that visit was a real kick in the teeth. "You have stage 3 malignant throat cancer". I wanted to reach out and punch the little bastard right in the mouth just to shut him up. I think I said 2 words, though I don't remember what they were, got up, walked out, got in the car and drove home without another word between Denise and I. (Now that I think of it, was I supposed to stop at the counter and pay a copay to them for sharing that great news?) I know for a fact we both had some tears in our eyes, but nothing was said. We were both a little shocked I'm sure. I just wanted to stay as calm as possible and not share the thoughts and emotions I was feeling until I could be stronger than I felt at that time. Probably not the healthiest approach and I won't argue with you. It's how I deal, and everyone has to do it their own way.
So what goes through your mind when you get told you have cancer. Is it shock, fear, sadness, anger? Honestly, I guess what I felt was fear, but not for me. It was a fear that I may leave my beautiful wife and two stunningly beautiful daughters without ever seeing the things a Dad dreams of seeing. Graduation, marriage (to some man I guarantee you I will not like no matter how good a person he is!), dreams fulfilled, grandkids to spoil and all the day to day fun you live for every day. That's what got me the most. The things I'd be missing. It wasn't the fear of dying, it was the fear of not living. Maybe that's the same thing, but I don't think it is.
So I'm 30 minutes into knowing and now what. I have an oncologist appointment they already scheduled for me at 6 tonight. It's 10:30 now. So what does a newly christened cancer patient do in the meantime? Well, for me it was easy. My 11 year old wanted a garden. We had put it off for a couple weeks. I ran to Lowes, bought the lumber, went to the landscape place and loaded up with loam. I built her a garden with tears and sweat mixing together but helping me come to grips with what was happening. Pretty nice garden actually. Glad I knocked that off. One less thing to worry about.
I asked Denise to call my parents. Something about telling your parents told me I wouldn't handle it the way I wanted to handle it. Unemotionally and factually. I knew I wasn't ready. Then, as I was shoveling loam in 90 degree sun, I started to release and felt more in control. I called my parents and started to tell them. It was all good until my dad said, "remember, you have two beautiful little girls to worry about" and I lost it. I've never sobbed in my life, until that moment. I hung up on him. I was angry and bitter and the fear of leaving them was back in a rush that just floored me. For the next ten minutes I sent shovel fulls of dirt flying across the yard with very little actually hitting the garden but the physical release helped me get in control again, at least to some degree.
Funny story, though I feel horrible about it happening, at the oncologist appointment. Denise and I show up at the medical building. THe doors are locked. So we go down to the loading dock and sneak in. Only 2 cars in the whole parking lot. I see a janitor and ask where suite 101 is. He looks at me with a blank stare for 20 seconds but says nothing. I repeat, do you know where suite 101 is? Blank stare again. Then I realize he doesn't speak a word of english. So Denise and I are wandering around this huge building with no idea where the Oncologist is. We finally find him, go in the waiting room, and nobody is there. I say "hello, is anyone here". I wait a minute then, a little louder, "hello, is anyone there". I look at the sign for the Dr and it says he is a PCP/Oncologist. Great I think, I have a primary care physician who dabbles with chemo on the side as my go to guy in my battle with cancer. Well, how can I lose this battle? Now I'm getting pissed, and admittedly my emotions were slightly askew at this point anyway.....HELLO, WHERE IS ANYONE!!!! sneaks out of me. Finally a guy walks out and says "the dr is in, he is with a patient". That's when I felt horrible. He was clearly consulting with someone but how the hell was I supposed to know. Put a sign in the window, have an admin in the office, answer me the first 3 times you heard me say hello, something. Fortunately we parted ways shortly after and I reached out to Dana Farber for a second opinion.
So in my next post I will talk a little about what led me to the ENT in the first place, what I have learned so far, what Dana Farber had to say, and how I feel heading into my first treatment on June 25th, also my Mom's birthday!!
8 words. That's how this whole thing started. My ENT (ear nose throat) Dr. Siegel, who is a great guy regardless of the news he delivered to me, started his discussion with me and my wife Denise by saying, "This is the worst part of my job". The rest of that visit was a real kick in the teeth. "You have stage 3 malignant throat cancer". I wanted to reach out and punch the little bastard right in the mouth just to shut him up. I think I said 2 words, though I don't remember what they were, got up, walked out, got in the car and drove home without another word between Denise and I. (Now that I think of it, was I supposed to stop at the counter and pay a copay to them for sharing that great news?) I know for a fact we both had some tears in our eyes, but nothing was said. We were both a little shocked I'm sure. I just wanted to stay as calm as possible and not share the thoughts and emotions I was feeling until I could be stronger than I felt at that time. Probably not the healthiest approach and I won't argue with you. It's how I deal, and everyone has to do it their own way.
So what goes through your mind when you get told you have cancer. Is it shock, fear, sadness, anger? Honestly, I guess what I felt was fear, but not for me. It was a fear that I may leave my beautiful wife and two stunningly beautiful daughters without ever seeing the things a Dad dreams of seeing. Graduation, marriage (to some man I guarantee you I will not like no matter how good a person he is!), dreams fulfilled, grandkids to spoil and all the day to day fun you live for every day. That's what got me the most. The things I'd be missing. It wasn't the fear of dying, it was the fear of not living. Maybe that's the same thing, but I don't think it is.
So I'm 30 minutes into knowing and now what. I have an oncologist appointment they already scheduled for me at 6 tonight. It's 10:30 now. So what does a newly christened cancer patient do in the meantime? Well, for me it was easy. My 11 year old wanted a garden. We had put it off for a couple weeks. I ran to Lowes, bought the lumber, went to the landscape place and loaded up with loam. I built her a garden with tears and sweat mixing together but helping me come to grips with what was happening. Pretty nice garden actually. Glad I knocked that off. One less thing to worry about.
I asked Denise to call my parents. Something about telling your parents told me I wouldn't handle it the way I wanted to handle it. Unemotionally and factually. I knew I wasn't ready. Then, as I was shoveling loam in 90 degree sun, I started to release and felt more in control. I called my parents and started to tell them. It was all good until my dad said, "remember, you have two beautiful little girls to worry about" and I lost it. I've never sobbed in my life, until that moment. I hung up on him. I was angry and bitter and the fear of leaving them was back in a rush that just floored me. For the next ten minutes I sent shovel fulls of dirt flying across the yard with very little actually hitting the garden but the physical release helped me get in control again, at least to some degree.
Funny story, though I feel horrible about it happening, at the oncologist appointment. Denise and I show up at the medical building. THe doors are locked. So we go down to the loading dock and sneak in. Only 2 cars in the whole parking lot. I see a janitor and ask where suite 101 is. He looks at me with a blank stare for 20 seconds but says nothing. I repeat, do you know where suite 101 is? Blank stare again. Then I realize he doesn't speak a word of english. So Denise and I are wandering around this huge building with no idea where the Oncologist is. We finally find him, go in the waiting room, and nobody is there. I say "hello, is anyone here". I wait a minute then, a little louder, "hello, is anyone there". I look at the sign for the Dr and it says he is a PCP/Oncologist. Great I think, I have a primary care physician who dabbles with chemo on the side as my go to guy in my battle with cancer. Well, how can I lose this battle? Now I'm getting pissed, and admittedly my emotions were slightly askew at this point anyway.....HELLO, WHERE IS ANYONE!!!! sneaks out of me. Finally a guy walks out and says "the dr is in, he is with a patient". That's when I felt horrible. He was clearly consulting with someone but how the hell was I supposed to know. Put a sign in the window, have an admin in the office, answer me the first 3 times you heard me say hello, something. Fortunately we parted ways shortly after and I reached out to Dana Farber for a second opinion.
So in my next post I will talk a little about what led me to the ENT in the first place, what I have learned so far, what Dana Farber had to say, and how I feel heading into my first treatment on June 25th, also my Mom's birthday!!
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