Thursday, July 31st

Hello everyone.
I’m sorry for the blog silence over this past week but you’ll be glad to know that it had nothing whatsoever to do with my health. For you worry warts out there that get nervous when you don’t see a blog entry for a while it’s OK now to assume that no news is good news!! LOL.

With the positive medical news has come a shift to working less from home and also for more total hours per week. The result is that I’ve been a bit tired lately and this is actually the first time this week that I’ve touched my laptop in the evening. Hence no blog entries.

But as for the current medical report the heparin is doing its job and the worst of the blood clot episode is behind us. The swelling in my neck is gone and it’s no longer sensitive to the touch. I began taking coumadin on Monday of this week and based on my visit to Dr. Richards today we hope to be able to stop the heparin by early next week. As expected Amy has been doing an excellent job with administering the heparin injections. My next visit to Dr. Richards will be on Monday afternoon and we’ll assess my blood counts yet again. Once I’m free from the heparin the focus will transition to tweaking the coumadin dosage. It’s expected that I’ll be on coumadin for approximately 2-3 months.

On Tuesday of this week I actually had a very symbolic and unexpectedly emotional milestone. Livingston Infusion Care, the company that provided my visiting nurse Lana and the pump that administered the 5FU chemo drug with each treatment, came to pick-up “the box”. In addition to containing 7 chemo treatments worth of medical waste “the box” contained the pump. They actually came to my office to make the pick-up and upon signing the receipt and returning to my desk I found myself in tears. I suppose it truly was a symbolic end to the chemo process. I hadn’t given much thought to how it might hit me when I really thought about it.

The first Mintz’s Mentschen LiveSTRONG event is getting very close and the TEAM has been really cranking up the miles and hill training in recent weeks. They’re ready. As for me, I’ll be slugging along on the 10-mile route on August 24th (I think the actual mileage is slightly higher then that). If there was something in the 20-30 range I’d do that route but the next event route is 45 hilly miles and there’s no way I can pull that off right now. So, my appearance will be largely symbolic and also so that I can give my teammates a huge hug in thanks for their love and support. Total fundraising is now above $28,900!!

Wednesday, July 23rd, 2008

Hello everyone... just a quick post to let you know that the mediport removal went very smoothly yesterday. I had been told that removal was going to be easier then when it was put in but I was still concerned. A little extra sedative and a much gentler doctor did the trick I think.

I'm a little sore but I'm already having improvement on the stiff neck simply from removal of the mediport. The rest will be cleared up when the blood thinners start tomorrow.

I have an appointment at Dr. Richards at 1:45pm. Amy will get a tutorial on administering the injections and I'd be surprised if they didn't have her go ahead and do this first one while people are there to provide help/feedback. Hopefully these drugs will have a quick impact and we can get beyond this little bump in the road.

Here's a picture while on the the 23.8 mile ride last weekend with two of my "draggers" (Cheri and Geneva.... Stephanie is taking the picture)

To be continued....

Are we having fun yet? REDUX

This past week has been nice since every passing day brought improvement in my eating and I’ve been taking full advantage. Oh yes, believe me on that one. I was really looking forward to this past weekend since Amy and I were able to join some of our Team Mentschen friends for a group fundraising effort in Mt. Holly. Lots of hugs and kisses were shared and it was just a special, albeit toasty, day to spend with some of my closest friends. The real icing on the cake came yesterday when I joined in on a team training ride and managed to drag my butt through a 23.8 mile ride. Actually Cheri Drysdale, Geneva DiTaranto, and Stephanie Tobler were the draggers and I thank them for their patience.

I was all excited to post a blog entry that focused on the success of the bike ride yesterday but today brought info that kind of trumps the bike ride for top billing.

Last Tuesday/Wednesday I woke up with pain in my neck but figured that I just slept funny and that it would go away. Problem is that it didn’t go away and this morning we made an unexpected visit to see Dr. Richards. He quickly sent me to the adjacent building to see a vascular surgeon for an ultrasound to see what might be going on. The important point for me to mention here is that the discomfort is right where the catheter from my mediport goes into the jugular vein in my neck. The diagnosis was clear and immediate… sure enough I have a blood clot in my jugular vein.

So…. I have an emergency procedure to unexpectedly remove my mediport tomorrow afternoon. And that will be closely followed by a several day regimen of heparin and then Coumadin. Amy gets to inject the heparin here at home.

Are we having fun yet? LOL!!

For those of you worrying about the mere mention of “blood clot” please don’t get too carried away. The situation would be very different if the clot was in a larger blood vessel and if that vessel was an artery instead of a vein. There’s no risk of a stroke. Having the mediport removed tomorrow is a whole lot earlier then expected but that may turn out to be a blessing as well. I do know that I’m going to ask them to crank up the sedation a bit more then when it was put in which was NOT fun.

So that’s the whole scoop for now.
I’ll be back in touch as soon as I can with status.
Don’t panic!!

The verdict is in

It took until 8pm when the phone first rang from Dr. Meng at Sloan-Kettering. This was followed in short order by a call from Dr. Richards so I now have what I was referring to as “the punch line”. And as far as I’m concerned it is NOW safe to celebrate!!

I thanked Dr. Meng for calling but he said he was only too happy to call as he doesn’t get good news such as the results of my PET scan all that often. He said people do get a complete response such as I have but that I should be commended for enduring 7 cycles of what he described as “a difficult treatment protocol”. He said that he and Dr. Richards agreed that “a break” of 3 months from all treatment was in order. In 3 months we’ll take a CT scan to see what, if anything, is happening.

What a relief!
I’m still feeling the affects of treatment #7 but have all of the patience in the world knowing that I’ll have the opportunity for complete recovery this time around. It’s time for me to get back on that bike!

Are you ready for this?

“COMPLETE METABOLIC RESPONSE”
What does that mean you ask? It means that the preliminary results from the PET scan this morning show that the cancer is GONE!!!!

Yes! You read that correctly, GONE.
It’s all very fresh and we’re still shaking and crying but it’s true.

The plan is that we will have a discussion with Dr. Richards and doctors at Sloan-Kettering on Monday to determine next steps.

I’m not sure at this point what else to say. Although I guess a big thank-you goes out to all of you for the prayers, support, cards/letters, phone calls, text messages, food, gifts, donations to LAF, and generally good karma that came our way over these past 7 months. It was a huge help, very humbling at times, and all greatly appreciated.

It’s definitely a bit surreal right now and I look forward to a return to “normalcy” with an appreciation for life from the perspective of a cancer survivor.

LiveSTRONG, enjoy life, and never take the simple pleasures for granted.

More to follow next week.

And now for something totally different...

Just when I start to refer to these treatments as a “monotonous roller-coaster”, as if they’ve become routine, it opened the door for something entirely different. I’m not exactly sure what the cause was, whether it is the chemo itself or inexplicably something I ate, but to say that I have been under the weather for the past couple of days would be an understatement for sure. Ordinarily I’d be dealing with “typical” mouth issues at this point but this time my digestive system has been down for the count big time. So much so that I had the opportunity to experience my first bouts with vomiting (sorry for the gorey details) on top of the other stuff that you can just imagine. So… needless to say I haven’t been sleeping well nor eating/drinking… well, just forget any of that for the past couple of days.

As of this morning things are definitely looking up and I was able to do a little bit of eating today. However, my weight is now down to new levels of “low”. A walk out to the mailbox this afternoon had me needing to sit down immediately. I’m hoping that since things seemed to have turned around that I’ll be able to put some pounds back on and get myself together before the PET scan on Thursday morning.

To be continued…

Tuesday, July 1st, 2008

Hello everyone….
About the only new and exciting news I have for you is a date/time for my PET scan. It will be on Thursday, July 10th at 7:45am. Since it will provide the first insight as to where we stand after the CT scan that was taken on April 9th I’m very anxious to get this done. I have every reason to believe that the positive affect of the treatments has continued and that once we have the results we’ll be able to discuss go-forward plans. Anything that eases what has become a monotonous roller-coaster of normalcy followed by extreme weight loss and discomfort has to be an improvement.

And that’s where I am right now… I was OK yesterday but took a big downturn today into the whole eating malaise. I fought it for as long as I could but now have to just ride it out again. Tomorrow is a visit to Dr. Richards for my Neulasta injection and some IV fluids. I can probably use the fluids at this point.

On the Mintz’s Mentschen front the training has become more serious, as expected, and total fundraising is now peeking over the $23,200 level. And many of the Austin team members, since their event isn’t until late October, have yet to really kick into gear. My personal fundraising is over $4,000 before JPMorgan Chase matching gifts have even hit my account! And there’s talk of publicizing our LiveSTRONG cause for 3rd Quarter giving at Chase.

Following are a couple of pictures of me and Bailey with the tandem and Mentschen teammates before the “simple pleasures” ride on June 21st. Thanks to Caren Altieri for the pics!!

Treatment #7 underway

Hello all,
Treatment #7 is underway and as usual all is well although I am feeling a bit wiped out and sluggish at the moment. Pre-treatment my blood chemistry showed that my hemaglobin was a little low but this fits the profile for past treatments. Hopefully I get another decent day or two before things start to take a turn for the worse.

We had the expected conversation today with Dr. Richards regarding scheduling for a scan. I proposed the idea of a PET scan this time around rather then a CT scan and he liked the idea. I'm thinking that instead of just knowing the size of any tumors that remain that it would be most useful at this point to leverage the information offered by the PET scan where it uniquely focuses on flagging cancerous growths. Dr. Richards also agreed that based on the results of this scan we will be reviewing the treatment plan. Once we get insurance approval for the PET scan we will be able to schedule for sometime after July 9th. The slight delay is to ensure there's a 3-month duration since the last scan so that the insurance company doesn't balk by claiming the scans are being taken to frequently.

So, that's it for now. We'll leave treatment #8 on the schedule pending results from the PET scan. To be continued....

Sunday, June 22nd.... simple pleasures

Wow, how time flies when you’re having fun. I didn’t realize that it’s been two full weeks since my last blog post. Although not too much of note has happened in those two weeks I can report to you that I feel dramatically better at this point. Remember that this particular treatment cycle has afforded me an extra week of recovery due to scheduling conflicts with end of school year events for Amy. As of right now it’s been exactly one full week that my eating ability has returned nearly to normal. I have been satisfying food craving after food craving and putting back on some of those pounds that I had lost. I know it sounds funny but some of these meals have nearly moved me to tears they were so good. How easy it is for us to take simple acts like eating for granted. Believe me, the value of simple pleasures such as the joy of a good meal with family and/or good friends becomes very clear when it is suddenly an impossibility. A special meal for me, one that takes me back to my childhood and special Sunday breakfasts with family, is something that I was able to partake in this morning. Many of you will not be able to relate at all to this but the picture below of lox/bagels, whitefish, and cheese blintz was heavenly for me. Ummmm good! LOL!



This weekend and the glorious weather we had on Saturday brought another opportunity to catch up on simple pleasures. I was able to dust off our tandem bicycle so that Bailey could join me on a ride with some of my Mintz’s Mentschen friends. Despite my being incredibly weak and out of shape it was a thrill to enjoy the exercise, good friends, and an absolutely beautiful day with Bailey. We rode just over 18 miles and I’m only saddened with knowing that it’s going to be another few weeks before I’m up to trying it again.

As I gear up for treatment #7 on this coming Wednesday I’m moved by knowing that our Mintz’s Mentschen fundraising total is now up to $22,850. This total was bumped significantly today by an extremely generous donation from a high school track buddy of mine, Mike Halloran. The donation itself is extremely humbling to me but Mike also wrote a poem that included some words and a message that I coincidentally try to live by. He wrote “….For in the end, we are not judged by the # of races we won or lost. Our measure of success is how we ran the race…”. I thanked Mike for joining the good fight against cancer and I pointed out how one of my personal heroes, Harry Chapin, had a similar message in one of his lyrics where he sang, “… it’s got to be the going not the getting there that’s good…”. My heartfelt thanks go out to everyone that has supported Mintz’s Mentschen through financial donation and/or by joining as a team member.

And Amy’s Army…. Oh, Amy’s Army… another constant source of love and support. The cards, emails, food, etc. are terrific. We can’t say thank you often enough or find the words that express the real depth of our gratitude.

On Wednesday we will be making the appointment for my July CT scan. I will be in touch to let you all know the details for that all important day.

Sunday, June 8th

Hello. Once again, a week has past and I’m sure that many of you are wondering about what may be happening in my corner of the world. Well, I guess I can sum it up by saying that it hasn’t been a great week. Mouth-related side affects settled in right away and actually have worsened through the week. I am fighting these with the tried and true “magic mouthwash” but really the biggest problem remains what I refer to as “food aversion” when it comes to meal time. Most foods just don’t pass the gag reflex and that’s making things tough. I’ve lost 1-2 pounds a day for the past week reaching a new all-time low for my “chemo era”. LOL.

I do have two new prescriptions for anti-nausea drugs that Dr. Richards is hoping might alleviate some of the eating problems. I guess it’s a positive sign that I was able to eat a bit of dinner tonight. Amy grilled some awesome hamburgers and I was able to eat one without a bun or condiments, and with a knife and fork. Hey, it’s some calories so I’m not complaining.

I continue to focus on getting through treatment #7 at the end of June and then to my next CT scan in early July. That scan will give us the basis to drill into any changes that may be required in the treatment plan.

On another topic, one of the things I do in my spare time (LOL) is to help organize an alumni group for my high school track team. Hey, I wasn’t always a bicyclist! My closest buddy from the high school team is Mark Cheben. Mark attended West Point and we’ve been able to maintain contact for the 31 years since high school. Last night we had a reunion dinner and Mark mentioned in advance that he had a surprise for me. I had a sneaky hunch what it was and I mentioned it to Amy as we drove up to the dinner in Union, NJ. Sure enough I was right, Mark had shaved HIS head as a gesture of our friendship. How cool is that!? Check out the picture below.



And a brief Mintz’s Mentschen report. We just passed the $19,000 level for total fundraising! LiveSTRONG!

Gee, some birthday present

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.

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.

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.

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…