After the usual routine of checking my weight and accessing my medi-port so that they could take some blood to check my blood counts we discussed ongoing treatment plans with Dr. Richards. Much to the surprise of both Amy and I we found ourselves reviewing the written treatment protocol that had been provided by Sloan-Kettering and instead of the treatment pause that we had expected we are going to continue with the same 3-week treatment cycles as we have since February.
As you’d expect this decision is a huge bummer as I was very excited to have a normal summer so that I could train some for my own participation in the Philly LiveSTRONG event with our Mintz’s Mentschen TEAM. Amy and I were also going to take the opportunity this summer for at least a short getaway that would celebrate our 25th wedding anniversary that came and went on April 30th. We’ll just have to play it all by ear from here.
The CT scan that had been expected for early June is now bumped out to early July following treatment #7. I’d expect though that if the results from the scan are good enough that it could prompt renewed discussion regarding the treatment plan. I’ll hold out hope that the treatment pause could come back as a possibility.
Meanwhile treatment #6 is getting off to a sluggish start where I’ve been doing a lot of sleeping. I’m starting this treatment cycle about 5 lbs. down from where I had stabilized so I’m going to be trying very hard to fight through and not lose too much more. Generally I’m doing well at this point but as I’ve found this is always a day-to-day thing.
Thanks to all for the birthday wishes and the ever present words of support.
Saturday, May 31, 2008
Wednesday, May 28, 2008
Bring it On
Hello everyone. I’m sorry for the time between posts but it’s been both a busy time with Erin’s graduation and also a tough time with a treatment cycle that just wouldn’t quit. As I mentioned in my last post I dropped a bunch of weight and my ability to eat just never recovered through the entire cycle. Therefore I've been somewhat miserable. Just ask Amy... LOL. However, today I was blessed with near normal eating ability and taste so we took full advantage and fed one of the many cravings that have accumulated over recent weeks. Hopefully I’ll be able to squeeze in one or two more good nights of eating before things turn sour again.
While I admit to being nervous for what the next 3 weeks could bring I have to say, “Bring it On”. My personal outlook is that many people have to endure much much worse in their individual battles with cancer. If my worst case boils down to two tough treatment cycles where I lose some weight then I can absolutely accept that. And more then one of you, some with medical credentials, have pointed out that lingering side affects at this point in the treatment regimen are a "good" sign. So, again, I'll play tough guy and say, "Bring it On".
Let’s look forward to the CT scan that will probably be in early June and the good results it will show us. I’m sure that I’ll come home with more details tomorrow and I’ll be sure to post our plan of attack as soon as I’m able.
A brief update regarding Mintz’s Mentschen. We’ve amazingly picked up even more team members so our count is up to 59 people. Incredible… absolutely incredible. And our fundraising continues to move upward as it just inched past the $17,000 mark. With some people just getting started I expect that we’ll be seeing that total steadily increase in the coming weeks/months leading up to the Philly and Austin events.
So…. Happy Birthday to me tomorrow. I think that it’s incredibly appropriate that my birthday this year is commemorated by what should be my last chemo treatment for the foreseeable future. A true reason to celebrate!! Thanks to all of you, “my people”. I know that I’ll have you there with me tomorrow and through these next weeks that could put me to the test.
While I admit to being nervous for what the next 3 weeks could bring I have to say, “Bring it On”. My personal outlook is that many people have to endure much much worse in their individual battles with cancer. If my worst case boils down to two tough treatment cycles where I lose some weight then I can absolutely accept that. And more then one of you, some with medical credentials, have pointed out that lingering side affects at this point in the treatment regimen are a "good" sign. So, again, I'll play tough guy and say, "Bring it On".
Let’s look forward to the CT scan that will probably be in early June and the good results it will show us. I’m sure that I’ll come home with more details tomorrow and I’ll be sure to post our plan of attack as soon as I’m able.
A brief update regarding Mintz’s Mentschen. We’ve amazingly picked up even more team members so our count is up to 59 people. Incredible… absolutely incredible. And our fundraising continues to move upward as it just inched past the $17,000 mark. With some people just getting started I expect that we’ll be seeing that total steadily increase in the coming weeks/months leading up to the Philly and Austin events.
So…. Happy Birthday to me tomorrow. I think that it’s incredibly appropriate that my birthday this year is commemorated by what should be my last chemo treatment for the foreseeable future. A true reason to celebrate!! Thanks to all of you, “my people”. I know that I’ll have you there with me tomorrow and through these next weeks that could put me to the test.
Friday, May 16, 2008
Treatment #5 update
While it’s been a full week since I last posted it certainly hasn’t been a dull week. As you know there was Helen Ihde’s LiveSTRONG challenge dinner and that was quickly followed by a trip to northern Virginia for Erin’s graduation from George Mason.
As far as treatment #5 itself is concerned the pattern of side affects appearing sooner and lingering a bit longer then usual is continuing. So that there’s no doubt on what this means let me make it clear that this is NOT a good thing. Only a couple of days into the IV treatment for this round and I was already feeling some discomfort in my mouth and a general aversion to eating. I knew right away this was a big, “uh oh”. Other then not being able to eat well, and dropping to a weight I probably haven’t seen since high school, I’m hanging in as best I can. I’m definitely driving Amy nuts at this point but the process of being extremely hungry yet unable to eat just messes with my head and mood. My visit to Dr. Richards office today didn’t shed any new light on this other then we can look forward to there being only one more treatment before a probable “rest” from the chemo process. In addition to the Neulasta injection I took on a full liter and a half of IV fluids without even thinking about having to go to the bathroom. Can you say, “dehydrated”?
Despite my inability to really partake in the festivities that were specific to eating we had a nice day for Erin’s graduation in Fairfax, VA yesterday. Amy and I will be heading back down bright and early tomorrow for round 2 of the festivities.
Hello Amy's Army. Thank you for the flowers and watermelon that appeared during the week!
And of course, my parting update on Mintz’s Mentschen exploits. As Dan Nies has reported we gained some new TEAM members in conjunction with LiveSTRONG Challenge day and now have a grand total of 56 team members. Our TEAM fundraising is now at $15,690. Helen’s fundraising dinner was an incredible success on Tuesday. In addition to raising over $2,000 Helen was able to organize a fun and tremendously meaningful evening for all that attended. Barbara Rabinowitz from the Meridian Health System spoke about survivorship myths and Helen delivered a heartfelt message about her personal mission in support of cancer-related causes. As I had hoped, everyone from my family was able to attend (except Erin down in VA), as well as my parents, and brother. Phyllis and Jack even made it on time from Colorado. As usual, thank-you just doesn’t seem to do the evening justice but it’s about all I can say. On behalf of my family, many hugs and thanks to Helen as well as all that were able to attend.
As far as treatment #5 itself is concerned the pattern of side affects appearing sooner and lingering a bit longer then usual is continuing. So that there’s no doubt on what this means let me make it clear that this is NOT a good thing. Only a couple of days into the IV treatment for this round and I was already feeling some discomfort in my mouth and a general aversion to eating. I knew right away this was a big, “uh oh”. Other then not being able to eat well, and dropping to a weight I probably haven’t seen since high school, I’m hanging in as best I can. I’m definitely driving Amy nuts at this point but the process of being extremely hungry yet unable to eat just messes with my head and mood. My visit to Dr. Richards office today didn’t shed any new light on this other then we can look forward to there being only one more treatment before a probable “rest” from the chemo process. In addition to the Neulasta injection I took on a full liter and a half of IV fluids without even thinking about having to go to the bathroom. Can you say, “dehydrated”?
Despite my inability to really partake in the festivities that were specific to eating we had a nice day for Erin’s graduation in Fairfax, VA yesterday. Amy and I will be heading back down bright and early tomorrow for round 2 of the festivities.
Hello Amy's Army. Thank you for the flowers and watermelon that appeared during the week!
And of course, my parting update on Mintz’s Mentschen exploits. As Dan Nies has reported we gained some new TEAM members in conjunction with LiveSTRONG Challenge day and now have a grand total of 56 team members. Our TEAM fundraising is now at $15,690. Helen’s fundraising dinner was an incredible success on Tuesday. In addition to raising over $2,000 Helen was able to organize a fun and tremendously meaningful evening for all that attended. Barbara Rabinowitz from the Meridian Health System spoke about survivorship myths and Helen delivered a heartfelt message about her personal mission in support of cancer-related causes. As I had hoped, everyone from my family was able to attend (except Erin down in VA), as well as my parents, and brother. Phyllis and Jack even made it on time from Colorado. As usual, thank-you just doesn’t seem to do the evening justice but it’s about all I can say. On behalf of my family, many hugs and thanks to Helen as well as all that were able to attend.
Friday, May 9, 2008
Treatment #5 is underway
Well, treatment #5 is underway. The last couple of nights have not been the most restful so right now I’m a bit on the tired side. But since I’m still in a decent place for eating at least I have that as a positive and it keeps me happy… LOL.
When I explained to Dr. Richards yesterday that my recovery took a good 3-4 days longer then with past treatments he dialed down the dosage of the Taxotere and Cisplatin by 20 ml each. If this helps to take the edge off of my week 2 side affects it will be awesome. He also indicated that once we have the CT scan in early June that he’ll engage with Dr. Meng at Sloan-Kettering again to strategize on next steps. He mentioned again that “we can’t just continue this forever” and that at some point it becomes unclear whether the small lesions/tumors that appear on the scans are active or if they’ve become scar tissue. It could be that we go into a mode where we take a break from the treatments and go into a “watch closely” period. I don’t know yet how that will translate into a frequency for CT and/or PET scans but the very idea of a respite from treatments has me VERY excited. Especially since this would come in the summer months and I’d be able to let loose with serious training for our LiveSTRONG efforts.
More news and feedback to come…
When I explained to Dr. Richards yesterday that my recovery took a good 3-4 days longer then with past treatments he dialed down the dosage of the Taxotere and Cisplatin by 20 ml each. If this helps to take the edge off of my week 2 side affects it will be awesome. He also indicated that once we have the CT scan in early June that he’ll engage with Dr. Meng at Sloan-Kettering again to strategize on next steps. He mentioned again that “we can’t just continue this forever” and that at some point it becomes unclear whether the small lesions/tumors that appear on the scans are active or if they’ve become scar tissue. It could be that we go into a mode where we take a break from the treatments and go into a “watch closely” period. I don’t know yet how that will translate into a frequency for CT and/or PET scans but the very idea of a respite from treatments has me VERY excited. Especially since this would come in the summer months and I’d be able to let loose with serious training for our LiveSTRONG efforts.
More news and feedback to come…
Wednesday, May 7, 2008
Food is good
Good food is definitely NOT over rated. My eating binge has been a bit abbreviated for this treatment cycle but I’ve tried to take full advantage of my recovery. I wasn’t able to chow down until just yesterday (yeah, I know… bummer) but we did a nice Italian dinner last night as a family and then tonight Amy and I visited our favorite Portuguese restaurant in Chambersburg. Dan Nies would be proud as I took his recommendation to eat tonight until I nearly burst and then to take another bite for him…. LOL.
Well, tomorrow begins treatment cycle #5. Wow, #5 is starting to sound like a biggish number isn’t it? As I’ve mentioned to some of you, this month of May proves to be a fun month so I don’t want to wish it away. Erin’s graduation from George Mason University is next week and we will have multiple ceremonies and celebrations to partake in for that. Two of my favorite people in the world, my aunt Phyllis and Uncle Jack (big Jack… LOL) are also coming in to visit and to partake in Erin’s festivities. And then my 49th birthday is on the 29th as I start treatment cycle #6. But even with all of that I’m eager to push on into June so that we can get the next CT scan done and figure out next steps with Dr. Richards. He’s the boss but I sure hope that there’s an opportunity for even a brief respite on the treatments. I’m going to ask tomorrow if that’s even a possibility just so that I can get my head straight for what might be coming down the road. If it’s going to be treatments as usual then I want to be able to prepare mentally and accept that now.
Although I haven’t been in full eating mode I’ve been feeling very well in recent days. Therefore I was able to make a visit to the gym last Saturday afternoon with Bailey now that she’s home from Indiana University for the summer. I did 35 minutes on a spin bike and even got up into position 3 for some simulated climbs (even though those were only 30 seconds in duration). On Monday the weather was awesome and Dan Gerstenhaber thankfully suggested an early evening ride before the TEAM conference call at 7pm. We managed to squeeze in a 15-mile ride at a nice steady pace that felt awesome. Thanks Dan G.!
As per usual here’s another quick update regarding Mintz’s Mentschen. With the change in weather not only is training and fundraising starting to get more serious but we’re also pulling together with top notch organizational efforts. We’ll soon have a blog specifically for the TEAM. When it’s fully up and running I’ll share the URL here so that you can all have a peek of you like. The total fundraising is now over $14,400 and all team members are finally getting their fundraising going. The total should begin to increase quickly. Helen Ihde’s dinner at The Shrimp Box is next Tuesday (tickets are still available if you’d like to join us for some fun… AND EATING. Just email Helen at hitrube@aol.com) The dinner will be a blast and the greater Mintz family will be well represented. I’m really looking forward to it.
Be well everyone.
I’ll check back in as soon as there’s something to share.
Well, tomorrow begins treatment cycle #5. Wow, #5 is starting to sound like a biggish number isn’t it? As I’ve mentioned to some of you, this month of May proves to be a fun month so I don’t want to wish it away. Erin’s graduation from George Mason University is next week and we will have multiple ceremonies and celebrations to partake in for that. Two of my favorite people in the world, my aunt Phyllis and Uncle Jack (big Jack… LOL) are also coming in to visit and to partake in Erin’s festivities. And then my 49th birthday is on the 29th as I start treatment cycle #6. But even with all of that I’m eager to push on into June so that we can get the next CT scan done and figure out next steps with Dr. Richards. He’s the boss but I sure hope that there’s an opportunity for even a brief respite on the treatments. I’m going to ask tomorrow if that’s even a possibility just so that I can get my head straight for what might be coming down the road. If it’s going to be treatments as usual then I want to be able to prepare mentally and accept that now.
Although I haven’t been in full eating mode I’ve been feeling very well in recent days. Therefore I was able to make a visit to the gym last Saturday afternoon with Bailey now that she’s home from Indiana University for the summer. I did 35 minutes on a spin bike and even got up into position 3 for some simulated climbs (even though those were only 30 seconds in duration). On Monday the weather was awesome and Dan Gerstenhaber thankfully suggested an early evening ride before the TEAM conference call at 7pm. We managed to squeeze in a 15-mile ride at a nice steady pace that felt awesome. Thanks Dan G.!
As per usual here’s another quick update regarding Mintz’s Mentschen. With the change in weather not only is training and fundraising starting to get more serious but we’re also pulling together with top notch organizational efforts. We’ll soon have a blog specifically for the TEAM. When it’s fully up and running I’ll share the URL here so that you can all have a peek of you like. The total fundraising is now over $14,400 and all team members are finally getting their fundraising going. The total should begin to increase quickly. Helen Ihde’s dinner at The Shrimp Box is next Tuesday (tickets are still available if you’d like to join us for some fun… AND EATING. Just email Helen at hitrube@aol.com) The dinner will be a blast and the greater Mintz family will be well represented. I’m really looking forward to it.
Be well everyone.
I’ll check back in as soon as there’s something to share.
Thursday, May 1, 2008
No news is good news
I know, I know, it’s been a full week since my last post on the blog. I’ve started to hear some flack about it.
It’s not that I’m withholding any news it’s just that it gets repetitive and difficult for me to make interesting for public consumption. As you know, the chemo treatments start with a 6-day period where I’m connected to an IV. The first day is approximately 6 hours at Dr. Richards office where I receive an array of pre-meds for anti-nausea, etc., followed by the Taxotere and Cisplatin. I leave the office with the IV pump that I carry around for 5 days as the 5FU is infused at 2ml per hour. The IV period, aside from dragging around and sleeping with the pump, is a piece of cake.
The second week of the cycle, where I am right now, is the toughest for me as this is when side affects specific to my mouth/throat kick in. As I’ve mentioned in prior posts this significantly affects my ability to eat/drink and needless to say it is uncomfortable, frustrating, and it gets me a bit cranky. I typically lose 4-6 pounds during this period but as long as I’m able to recover going into week #3 I quickly gain that weight right back as I go on an eating frenzy right up until the next treatment begins.
That’s the cycle and so far it’s been fairly consistent from treatment to treatment. So, you can see that this would be tough for me to make interesting on the blog each and every treatment cycle. However, I will admit to being a little concerned at this moment because I’m still significantly affected by mouth issues and in prior treatment cycles I was on the verge of starting the chowing down period at this point. As I said, very frustrating. And with as much as we watch Food Network in this house… oye.
Quick update on Mintz’s Mentschen…. we’re collectively up to $13,200 raised! It’s still very early in the training/fundraising process since our first LiveSTRONG Challenge event, the ride in Philadelphia, isn’t until late August. So this early total is awesome! And just this week we actually picked up a total stranger as a new team member. Amy Thomas, the new team member, indicated via email to Dan Nies that she was convinced to join the team after reading about the Mintz’s Mentschen team in the LiveSTRONG Newsletter and by my picture. She said I remind her of a close friend of hers. Dan Nies told me how impressed he was that I’m now influencing total strangers…. LOL. I don’t know about that but it sure is great watching our team, and effort to raise money for the Lance Armstrong Foundation, continue to grow. I sure wish that I could join the team in Austin, however, I’m having to use vacation time for the first 2 days of each treatment cycle and I’m just not going to have enough time to absorb the trip as well. No biggie, we have an awesome group for Philly and I WILL be there!
Eating frenzy or not I’m looking forward to an easy 15-20 miler this weekend.
It’s not that I’m withholding any news it’s just that it gets repetitive and difficult for me to make interesting for public consumption. As you know, the chemo treatments start with a 6-day period where I’m connected to an IV. The first day is approximately 6 hours at Dr. Richards office where I receive an array of pre-meds for anti-nausea, etc., followed by the Taxotere and Cisplatin. I leave the office with the IV pump that I carry around for 5 days as the 5FU is infused at 2ml per hour. The IV period, aside from dragging around and sleeping with the pump, is a piece of cake.
The second week of the cycle, where I am right now, is the toughest for me as this is when side affects specific to my mouth/throat kick in. As I’ve mentioned in prior posts this significantly affects my ability to eat/drink and needless to say it is uncomfortable, frustrating, and it gets me a bit cranky. I typically lose 4-6 pounds during this period but as long as I’m able to recover going into week #3 I quickly gain that weight right back as I go on an eating frenzy right up until the next treatment begins.
That’s the cycle and so far it’s been fairly consistent from treatment to treatment. So, you can see that this would be tough for me to make interesting on the blog each and every treatment cycle. However, I will admit to being a little concerned at this moment because I’m still significantly affected by mouth issues and in prior treatment cycles I was on the verge of starting the chowing down period at this point. As I said, very frustrating. And with as much as we watch Food Network in this house… oye.
Quick update on Mintz’s Mentschen…. we’re collectively up to $13,200 raised! It’s still very early in the training/fundraising process since our first LiveSTRONG Challenge event, the ride in Philadelphia, isn’t until late August. So this early total is awesome! And just this week we actually picked up a total stranger as a new team member. Amy Thomas, the new team member, indicated via email to Dan Nies that she was convinced to join the team after reading about the Mintz’s Mentschen team in the LiveSTRONG Newsletter and by my picture. She said I remind her of a close friend of hers. Dan Nies told me how impressed he was that I’m now influencing total strangers…. LOL. I don’t know about that but it sure is great watching our team, and effort to raise money for the Lance Armstrong Foundation, continue to grow. I sure wish that I could join the team in Austin, however, I’m having to use vacation time for the first 2 days of each treatment cycle and I’m just not going to have enough time to absorb the trip as well. No biggie, we have an awesome group for Philly and I WILL be there!
Eating frenzy or not I’m looking forward to an easy 15-20 miler this weekend.
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