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.
Saturday, July 27, 2013
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!
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