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!!