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
Sunday, September 29, 2013
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
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