For those of you that have stuck with the blog and have been sharing in the adventure, I apologize profusely for not updating you. In my last post I mentioned I was going in for my first full scan since the treatments, and I got the results. The results of the first full scan were....oh wait, a twist first about how I learned the results...
Denise and I head in to Dana Farber to meet with all the Dr.'s including the surgical oncologist to learn if:
A. The treatments worked
B. The treatments failed
C. The treatments worked BUT I need surgery to remove any lingering issues in the lymph nodes
We get to Dana and they take all my vitals. Down another 7 lb's. You know in hindsight thank God I had trained for these treatments by bulking up so much. It paid to fatten up! After that I get summoned to the principles office to go see my phenomenal team of Dr's. Denise and I head into the room and Dr Haddad is already there. Hmmm, well that's unusual, we are always brought to the room first and he arrives shortly after. Radar goes off for the first time, my heart gets a couple butterflies and something just doesn't seem right to me. Dr H says hi and asks how I'm feeling so I say fine, and he says good, and I say 'well, I'll know better in a minute right' as I wait for the results to be told. So at this point I have a bad feeling because they were waiting for me to come in. That was the short jab, then comes the knockout punch. Now remember, if I haven't said it in the blog please believe me when I tell you that I had 0 concern during the treatments that it would not be effective. I mean literally 0% chance of failure was my true belief. I owe it to the Dr's at Dana for giving me that perspective. Dr Haddad and Dr Margalit couldn't have had more of my confidence than what they had. So you could imagine my reaction when Dr Haddad's opening comment was, 'so we will schedule a follow up in 4 weeks....' The ... represents the rest of his comment that I didn't hear because my heart just came out my throat. I looked at Denise and she was looking at me like "what just happened???" Clearly my expression wasn't well hidden because Dr Haddad's eyes lit up and he said 'didn't you get the results already?' I can't remember if I shook my head, said the words no, or just stared blankly at him in disbelief but he got my point immediately. He said calmly, "Mark, the results were excellent. The tumors are unrecognizable at the ......" Here the ... represents the rest of the sentence that again I failed to hear because at this point I could have walked on the clouds. He thought we had received the results prior which we hadn't. I apologized for having defecated on his floor and shook his hand. Boy, talk about your highs and lows in a very short period of time. I knew they wouldn't fail, I told them all along I had no concern and I was right all along.
It's now March 3rd and I have had two follow ups with the Dr's where they stick a camera up my nose and down my throat. Which leads me to mention one thing here, I have to be careful not to disparage Dr Haddad because he could easily make my day really disappointing with this contraption. I know Dr Margalit has read my blog but I'm not sure if she'd tell on my or not. Of course what makes this a non issue is that these two people saved my life so they can get away with more than the typical person and stay on my good list!
From a health standpoint I have nothing to complain about any more. Not saying I don't complain as my family and friends will attest to, just that I'm thrilled with the early results and the minor issues I have now are nothing in comparison to the feeling I had for those 15 seconds (which felt like a month's time) when I first thought it may have failed. My fingers constantly feel like they are numb and tingly, and the taste buds are slow in coming back. I am exercising again, (ran 2 miles yesterday which for me is good) and by again I mean for the first time in my life, eating a little more now that ever and really looking forward to a great summer with family and friends.
For those of you who didn't know the results and maybe thought the worst because I didn't update this, I'm sorry. For those of you at Dana including staff, nurses, Dr's, and everyone who made it so bearable, thank you, thank you, thank you. For family and friends, your support was beyond belief. I know I didn't deserve it, and as my sense of sarcastic humor returns some of you may regret supporting me, but you made a mark on me that will never go away and I thank you more than you will ever know.
I have 2 years of scans to go before we are out of the woods on this. I will do my best to update the blog and I honestly hope none of you reading this EVER have to write a similar blog.
Monday, March 3, 2014
Saturday, October 19, 2013
There are ups and downs I'm told...but when exactly are the ups coming?
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.
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.
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
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