Current status

While I touted October 4^th as a big day due to the CT scan I apologize once again for leaving you all hanging here with no idea how that turned out.

I guess the keyword following the CT scan is “ambiguous”.  The idea of ongoing scans is to compare each one to the one before so that changes of any kind can be flagged and analyzed accordingly.  Unfortunately a CT scan is not an apples-to-apples comparison with a  PET scan.  Of course as a standalone test the CT scan gave us information but Dr. Richards had to press the radiologist to stretch a bit to try and make even basic comparisons.  This fuzzy compare indicates that the liver tumors are roughly the same, or slightly larger, and the CT also spoke again about activity in my T9 spine. 

For now we are continuing with the VP-16 based chemo and Dr. Richards suggested that we get another opinion from Sloan-Kettering.  I sent MSKCC the CT scan as well as the disks from the octreotide scan I had in late July.  We have an appointment with Dr. Janjigian on Thursday, October 25^th.  I continue to juggle the pain meds to get decent sleep and so that I can function during the day.

Stay tuned!

Big day

Although our attempt to schedule a PET/CT scan failed I have a regular CT scan scheduled for this afternoon.  I had read that some insurance carriers are difficult with regard to PET/CT scans and it turns out that our new carrier falls into that category.  Nevertheless, this will be a big day as the CT will tell us most of what we need to know.  Most important is the question that after 4 rounds of chemo treatments (12 days) on the new protocol are we getting a positive result?

I'm also in a fair amount of pain/discomfort so hopefully the CT will shed some light on that as well.

Clearly this is a big day and I thought that I'd let you know that I'm bringing you along for the ride.  I'll post the results as soon as I get them.

Thursday, September 20th

Today was treatment day 3 of 3 for this 4^th round of my new chemo protocol.  As I’ve mentioned, this 3 days in a row thing has its transportation challenges so Amy was with me on Tuesday, my parents yesterday, and Kathy Lynch chaperoned today.  Fun for all!

Lately I’ve been a bit achy and uncomfortable so I’ve been using the pain meds a bit more then I had been.  In fact, Dr. Richards wrote me an Rx on Tuesday for a stronger dosage.  We’ll see how that goes.  More importantly I also got the Rx for my next PET/CT scan.  We had been pointing toward doing the scan after round 5 of chemo but since I’ve been having this discomfort we’re going to jump in sooner than later with the scan.  This will get us the scan results a good 2-3 weeks sooner and, if necessary, we’ll be able to take action on anything new that requires immediate attention that much sooner.

My blood counts have been mostly stable.  Neulasta is doing its job for my white blood cell count but my platelets have been all over the place.  I have the blood counts checked in week 3 of each 3-week cycle and generally they show as very low at that time.  But so far during that final week they boomerang back up into normal levels in time for the next treatment.

Plans are now starting to come together for our winter cancer fundraiser and it will follow in the pattern of what we’ve done for the past two years.  We’ll be participating in Cycle for Survival where 100% of all funds raised go directly to Memorial Sloan Kettering Cancer Center and the clinical trials/research they are doing for rare cancers.  Esophageal cancer is considered a rare cancer.  The past two years we participated at event sites in Manhattan and Long Island but it looks like we’ll be spinning down in Bethesda, MD this year.  My daughter Erin will be taking the lead for planning and recruiting since she lives down in the Wash DC area.  Some of our NJ/PA based Mentschen will also make the trip to Bethesda.  More details to follow.

My fundraising for LiveSTRONG has trickled along but I think at this point it is essentially complete at a grand total of $6,805.  That’s a single event fundraising record for me.  Our Mentschen team will eek out a total that surpasses $33,000.  Gotta love it!  Thanks!

LiveSTRONG!!

The holiday weekend is here and with an early release from work I have some time to try and catch you all up on my activities of the past few weeks.

As you’ll remember this new chemo protocol started with round 1 back in early July while we were also doing radiation treatments.  That combo made things a bit interesting with my blood counts but since then the post-treatment neulasta injections have been doing their job and my blood counts have been stable.  The biggest challenge with chemo is actually rolling around now since the school year is starting next week and Amy won’t be in a position to accompany me for 3 straight days of treatment.  Amy will continue to join me on the first day of each treatment but the remaining two days we'll be enlisting the help of family and friends.  We look to be OK for September 18-20 but will consider all offers as we go into October.  This will be new for me and could be fun as we spread the chemo fun around.  Ha!

The weekend before Livestrong there was an informal 35^th high school reunion that was hosted at the Jersey shore by one of my Union High School friends in the Class of 1977.  As with the event he also held last year it was a blast.  As I’ve said before on this blog one of the biggest lessons I’ve learned through my saga is the incredible boost I get from the kind words of friends new and old.  People came up to me one by one, some that I haven’t seen in literally 35 years, and simply said it was a very moving day.  Many thanks to my Union High School classmates.  Especially to Joe Falgares and his wife Maddalena for being such generous and gracious hosts.

Ahhh yes, Livestrong.  The weekend that never disappoints.

Heading into the Livestrong weekend of August 18-19 I literally had no clue whether I was going to walk, ride, or just sit during the weekend events.  I really had plenty of aches and pains, lack of physical condition to be cycling on hills, and miscellaneous other unpredictable chemo side effects.  But as some have seen in the pictures posted on Facebook, this is not an event that I can easily take a pass on.  Especially not after what the months of May-July had given me.  This was my opportunity to get on my bike and tell cancer where the hell it could go.  And so that’s what I did.

I made sure that I was hydrated, that I had eaten enough to support me through the short 20-mile route, and I took some precautionary meds pre-ride.  I knew that my Mentschen posse of around 10 would help me through and let me tell you the stars aligned to make this one of the best rides I’ve ever been on.  I conquered several decent hills WITHOUT WALKING (See the pic here as I pass others that DID walk up hills.  Of course with my personal motivator Mark Cheben!) and I generally felt terrific.  It all culminated with a dramatic finish as I crossed the finish line on the right to pick-up my survivor’s rose and my posse rode in formation on the left as my escort.  Yep, you got it… I kinda lost it.  I hope the ride photographers got some good shots of our finish.

And the donations for Livestrong continue to trickle in.  It looked for a while like we might take some team honors but a few teams came out of nowhere for the top few spots.  But the Mentschen have done well and when corporate matching gifts settle in we could wind up in the #4 spot at approximately $34,000.  Meanwhile, my fundraising was a new personal record for a single event at $6,685 (still waiting for a match).  That puts the Mentschen 5-year total over $170,000.  We’re well positioned to blow through the $200,000 mark next year!

One more time….  Thank you, thank you, thank you to all that donated so generously.  It’s important that we keep this support going because the Lance Armstrong Foundation is unique and very productive in the work it does in various aspects of cancer survivorship, advocacy, and support for research.

Next blog post by Friday... thanks for waiting

Hello everyone.  Yes, I know that I'm a bit late for making a blog post and I really do have some interesting things to write about.  I'm just lacking the energy at the moment as I'm smack in the middle of a chemo treatment.  Please give me 2 or 3 days and I'll try to get something posted.

Bottom line is that all is OK.  Thanks to everyone that has been prompting for a blog post.  It makes me feel good to know that people are out there reading along.

Back in the chemo saddle

A lot has happened since my last post and since I left off with my mention of the octreotide scan I guess that’s a good place for me to pick up with.

The octreotide scan was an interesting 3-day experience.  The first two days were run of the mill imaging that started with a nuclear injection and with scanning that lasted no longer than 30 minutes.  The third day was different with scanning that took around 90 minutes and with the last 60 of that being one long segment.  For anyone that has had imaging done where you have to stay still with your arms over your head knows that 60 minutes is a long time.  Wow was that uncomfortable and I’ll be happy to not have to repeat an octreotide scan anytime soon.  All of this imaging was stitched together into a 3-D view that I hope to get to see at some point.  It sounds interesting.

The scan results told us about the liver lesions we already know all too well about and it also flagged other places that I have been feeling discomfort.  These were my sacrum, iliac bones, and sacroiliac joints as well as a rib (and it's the rib that is actually the most uncomfortable).  With my chemo treatment this week Amy and I discussed all of this with Dr. Richards and for the time being we’re going to manage the pain while expecting the new chemo protocol of VP-16/Carboplatin to do its job.  With that said, Amy and I will be sharing the scan results with both the radiation oncologist as well as with Sloan-Kettering to see if they have other opinions.

We didn’t actually see the scan results until this past Monday when we returned from a week away at Lake Tahoe and Colorado.  It was fantastic to have that time away even though we didn’t really do anything that was overly active.  The mellow time around the hotel pool and taking in the sites of Tahoe was great.  When the hotel pool closed to accommodate renovation work we got in the car for a drive and wound up in San Francisco.  We didn’t realize we were only 3-4 hours away and spontaneously decided to keep driving and we had a nice lunch at Fisherman’s Wharf.  While in Colorado we were able to spend time with Sasha as well as with some of our favorite people in the world, the Quinns.

This weekend is an informal 35^th reunion of my Union High School class of 1977 that is generously hosted by Joe Falgares at his house on the water in Toms River.  Last year was a blast and it looks like the turnout this year is going to be even better.  People are coming from all over the country.  I can’t wait.

And the weekend after that….. yep, it’s Livestrong time!  With my recent medical developments it’s going to have to be a game day decision for whether I’m able to participate in anything.  But I want to do this so badly and I’ll be pressing very hard to get on my bike and spin very gingerly through the 20-mile route.  I’ll have plenty of people with me to take care of me and even to physically push me up hills if I need it.  Thank you to all of you that have generously donated to the Livestrong cause.  My personal fundraising is at $5,585 and our Mintz’s Mentschen total is at $25,318.  These aren’t’ our biggest totals but they’re clearly quite impressive.  Heartfelt THANKS to all!

Can you say octreotide?

I'll post more as soon as I can but today is day #1 (of 3) of the octreotide scan that both MSKCC and Dr. Richards requested.  On a hunt to make sure we know where any neuro-endocrine cancer might be hiding.

Relative calm ensues

Before I shut down my computer for the night I thought that I’d make this quick post to keep my string of Sunday evening updates alive.

Whew, what a week!!  After a week of combination chemo and radiation that definitely had to be said.  I’ve never had to deal with a week like that before and I won’t mind if I don’t have to see anything like that again for a while.  The running back and forth had Amy and I hopping to the point where on more than one occasion we almost turned toward the wrong doctor’s office.  I don’t think I need to go into how interesting this made my work week.

All in all I held up pretty well with the different treatments.  My back is continuing to improve although there’s no question that I have a way to go before the pain is at an acceptable level.  Therefore I continue to use the Percocet on an as-needed basis.  And so far there haven’t been any terrible side effects to the chemo, or to the neulasta, so we’ll keep plugging away.  Tomorrow is my final radiation treatment and we’ll be monitoring the pain levels in the coming weeks.

Instead of using every last sick/vacation day I have this year on treatments and tests we decided to stand firm on trying to grab at least 5 days of real vacation this summer.  I have mentioned this trip on the blog before… we’re heading to Lake Tahoe and Colorado on Saturday July 28.  I can’t wait to show Amy some of the Tahoe sites.  It’s been a while since I’ve been there and I know that a lot of South Lake Tahoe has changed but I’m fairly sure that the lake itself is pretty much in the same place (lame attempt at humor).

I’d be remiss if I didn’t make my parting LiveSTRONG plea and thank you.  Our fundraising totals are continuing to climb as a team and we hope to be in the top 3 when all is said and done.  If you haven’t donated yet and can consider a donation of any size please click here to access my personal fundraising page.  Thanks!

A busy week

It’s only been a week since my last post but a busy week it was.  I thought several times about posting during the week but I just wasn’t up to it physically.

Radiation started last Monday and as an everyday event I immediately felt like I was on a runaway train since it kind of took over as a mid-day event that had to happen.  Radiation itself hasn’t been bad but the pain and mobility issues that I am having in my back had become somewhat extreme.  Advil definitely wasn’t cutting it anymore and Dr. Fein wrote me an Rx for Percocet.  At my request the dosage was kept low and it has definitely done the job for me.  Especially with regard to helping me get a decent night of sleep.  A couple of potential scenarios for when I might start feeling some pain relief from the radiation had been described to me and as always Amy and I just adopted our usual one day at a time outlook.  But with 4 out of 10 treatments under my belt I started to feel a slight bit of relief yesterday when I woke up.  Let’s hope that with 6 more to go it progresses to complete pain and mobility relief and that the relief is long-lasting.

Lasting relief would be great because this Tuesday is when we start the new chemo protocol.  I’ll be having chemo in the morning followed by radiation shortly thereafter.  As Steve Alexander would say, “Woof!!”.  Chemo will consist of VP-16 (aka Etoposide) and carboplatin for 3 straight days (carboplatin will not be given on the 3^rd day) and this time around we’ll also be using neulasta on the 4^th day to try and keep my white blood cell count above hospital visit levels.  This will all happen on a 3-week cycle so I’ll have chemo the first week and then there will be 2 weeks to work on recovery.

Remember too that the octreotide scan, another 3-day adventure, will be on July 23-25 at Princeton Radiology.  Since I haven’t had one of those yet I’m not entirely sure of what we might learn from this scan.  Of course I know what I’ve read about it but, as always, it’s one day at a time and right now I’m focused on the challenge of this coming week.

What followed my mid-June email plea on behalf of myself and the Mintz’s Mentschen team has been tremendous.  I know that I’ve said this before but you’ll have to bear with me being a bit repetitive about it as I am just overwhelmed by it all.  Love and support from all corners of my life as well as financial support that has my LiveSTRONG fundraising up to $5,160.  Mintz’s Mentschen is up to $16,743 and stands firmly in 4^th place in the overall team fundraising standings.  We’re pushing for a top 3 finish so if you can consider a donation please do it as soon as possible.  The August 18-19 event is getting closer and closer!  My fundraising/recruiting webpage can be accessed by clicking here.

Here we go

I’m on the tired side and definitely a bit uncomfortable so this post will be a bit short.  But this week will start a month of July that proves to be on the wild side so before things get too crazy I need to post a current status.

The MRI results from last Tuesday were as I expected and by flagging cancer in several places of my mid and lower spine they provided an explanation for the back pain I have had since Memorial Day weekend.  I was able to get an immediate appointment with a terrific radiation oncologist, Dr. Douglas A. Fein (click here for his bio).  During that visit I had a grid drawn on me with magic marker and 10 tats were applied that will guide my radiation treatments.  Treatment begins tomorrow and I will get them for 10 straight days.  Dr. Fein is confident that I’ll have good results from this.  I told him that I need to be able to ride my bike 20-miles on August 19^th and he told me that won’t be a problem.  I’m holding him to it.

Amy and I also meet with Dr. Richards on Tuesday afternoon to finalize the chemo plans and that includes figuring out the schedule.  I believe that the VP-16 is administered 3 days in a row.  Things are going to be fun for at least a couple of weeks while we have to juggle both radiation and chemo.

The fun part of this, as Dan Nies brought to my attention, is that I’ll either start to glow in the dark soon or I’ll be developing some kind of super powers.  I’ll keep you all posted on which it is.  I'm hoping for some kind of super power because that will be more fun then simply having a little extra glow.

Mintz’s Mentschen is currently in 4^th place with over $15,600 raised.  Thanks!!  We have plenty of time to make a run for the top 3 places.

Lots going on

Things definitely bogged down there for a bit while going through the liver biopsy itself, waiting for the pathology report, getting an appointment at MSKCC, waiting for further review of the biopsy slides by MSKCC, and then prescription of an MRI and octreotide scan.  Each of those scans were prescribed by both Dr. Janjigian (I’ll be using “Dr. J” from now on because it’s cool and quicker to type) and Dr. Richards so it’s good to know that everyone is on the same page.

MSKCC pathologists wound up agreeing with the original biopsy report (major woohoo since that means I won’t have to be harpooned for another liver biopsy!) and that enabled Dr. J and Dr. Richards to discuss the specific chemo protocol that we’ll be using.  Minimally the new protocol will be composed of VP-16 and a platinum-based drug.  Given that I’ve had cisplatin, oxaliplatin, and carboplatin I’m not sure which one we’ll use.

The MRI is tomorrow afternoon and is of my spine.  This will provide us with imaging that is a follow-up to things that were mentioned on the 5/16 PET/CT scan as well as to discomfort that I’ve had for the past several weeks.  The octreotide scan actually takes place in parts over 3 days (I’m sure that I’ll have some good stories from this one).  This scan will take place in late July and will not impact our ability to start chemo in early July.

I sent my big email blast for LiveSTRONG a couple of weeks back and as is always the case I was blown away by the numerous emails and donations that I received in response.  I really did get emotional about it all.  The support that is expressed by everyone not to mention the generous financial support for LAF is incredibly humbling.  My personal fundraising is over $4,500 and Mintz’s Mentschen is pushing for a top 5 team finish with $13,600 to-date.  The same plea still applies as we’re continuing to get new team members for walking/running/riding.  To either join our team or to donate you can utilize my personal fundraising page by clicking here.  Thanks!!

And the verdict is?

Today was our appointment at Memorial Sloan-Kettering and the verdict is?  

Unfortunately it was a hung jury.

While the pathology results from the liver biopsy were “good” with regard to bringing information that offers new and different treatment options they were also bad.  They were bad in the sense that they are so different pathologically from the biopsy that was taken from my esophagus in 2008.

Therefore, Dr. Janjigian at MSKCC wants to review the biopsy slides from 2008 and if the MSKCC pathologists are still in need of more information I could possibly have to go for yet another liver biopsy.  The kicker with this biopsy is that it won’t be done with a fine needle (as if that big honking needle was “fine”) this time it will be done with a CORE needle.  I am so excited at the prospect of this you can't imagine.

I also mentioned that I’ve been having some back pain in recent weeks and that has earned me an MRI of my spine.  No biggie on that one but it’s just another thing between me and getting back into treatment (chemo).  Depending on the results of the MRI I could actually wind up receiving radiation treatment for the first time.

All of this new stuff!  Ain’t it exciting!?!?

So stay tuned because the next week or so may bring some new twists and turns.

Before I go I have to thank everyone for their response to my LiveSTRONG fundraising and recruitment plea.  It looks like we’re picking up some new walkers for our Mintz’s Mentschen team and my personal fundraising total has reached $3,365.  Our team total of $10,365 has us in 6^th place out of all teams registered for the Philly LiveSTRONG event.  You can donate and/or join us via my fundraising page by clicking here.  Thanks!!

The results are in

Well the good part about the liver biopsy is that it turned my 3-day holiday weekend into a 4-day weekend.  Woo-hoo!!  I knew enough about the procedure to be nervous as it approached but I figured that I’m pretty good with handling pain so all would probably be OK.

The doctor that did the biopsy was great.  His name was Dr. Burgos.  As opposed to other interventional radiologists that I’ve had for port insertion/removal Dr. Burgos was very social and upbeat.  He told me what to expect and kept me well informed as he was doing things.  YES, I was wide awake and undraped.  i.e. I was able to see everything as he was doing it!  That was both good and bad because I was able to know what was coming but darn those needles were BIG!  About the only part that really hurt was right at the beginning when he inserted the needle through my rib cage and then into the liver.  The best part came at the end when he told me that I had “scored one for the team”.  I asked him what he meant and he told me that whenever he sees that his patient is a relatively young man he gets worried because men can’t take pain like a woman.  He told me that I did as well as a woman.  Now there’s a compliment for you.  LOL.  I’ll take it.

I got the biopsy results last evening when Dr. Richards called.  While I’m HER2 negative I never heard him so excited before.  The biopsy provided a lot of detail about the liver metastasis and Dr. Richards is excited because this information opens the door to a different set of drugs.  And with some that are very new.  With this turn of events he suggested that we go to MSKCC for a consultation and I’m working to make that happen as quickly as possible.  I called Saint Peter’s pathology to get the biopsy slides and I already have the CD from the last PET/CT.  Hopefully I get a date from MSKCC tomorrow.  The MSKCC doctor I had seen 3 times over these years has left the hospital and I’ve been assigned to a new doctor.  Here’s a link to her profile page at MSKCC.

Are we having fun yet?

Tuesday, May 29th had aligned itself to be my 50th chemo treatment and my 53rd birthday.  Well, it's still my birthday but now I have the pleasure of going to St. Peter's University Hospital in New Brunswick for a liver biopsy instead of having a chemo treatment.  Sounds like fun, huh!?

OK, now what?

After all of the waiting the PET/CT has come and gone and now we’re dealing with its aftermath since the results were not good.  For the first time since this saga began we’ve hit a chemo cocktail that didn’t bring positive results.

In February the scan showed metastases on my liver, as has been the case for 3 plus years, and we started a new set of chemo drugs that I had had before although not together.  And now after 3 months the largest metastasis is about twice the size.  So we’re scrambling to try and come up with a Plan B.  Since my staging is stage 4 the basic standard of care remains chemotherapy and it is the core of my treatment plan.  This doesn’t mean that we won’t be seeking other potential treatment but the initial challenge is to try and come up with chemo drugs that we haven’t tried yet.  Since I’m now in year 5 coming up with new drugs to try is nearly impossible because I’ve had just about all of the different drugs at least once.

One thing we haven’t tried yet is to see if I have the HER2 or EGFR receptors.  Only around 30% of people have these receptors but if it turns out that I’m one of those then it opens the door to using drugs such as herceptin that have had good results.  So this is going to be our step 1 and that means that I’ll be having a liver biopsy to test for those receptors.  The biopsy will probably be next Wednesday, May 30^th at St. Peter’s in New Brunswick.

I will also be looking to schedule an appointment with the Liver Metastases group of doctors at Sloan-Kettering.  I believe that this specific group didn’t exist until relatively recently and so I’m hoping to get some new perspective from them.

With all of that said the weather this past weekend was terrific.  And since I was scheduled to ride in an event that supported the Multiple Sclerosis Society and my friend Missy Gervasini I stubbornly held to that plan despite my not feeling that well physically.  The ride was a major physical challenge but I enjoyed riding the beginning miles with Missy and the remainder of the 20 miles with Bobby Wiener.  It was a fun day indeed.

On Sunday I had a ride scheduled with Grace, Stephanie, Dan, and Kathy so once again my “no rules” frame of mind won out and I was able to struggle through a 30-mile ride.  This was possible in large part to the magic massage skills of Kathy Lynch.

The numbers for both Mentschen team members and fundraising for LiveSTRONG are growing finally.  As always, if you can join us to walk, run, or ride that would be terrific.  Donations of any amount are deeply appreciated.  Click here to access myLiveSTRONG web page where you can either join us or donate.  THANKS!!

It's finally here

It seems like I've been waiting for this for an incredibly long time and finally it's here.
The PET/CT tomorrow is.....  well, huge.
Not much more that needs to be said.

I'll be back in touch here with the results as soon as I can.

Still plugging away

Before too much more time goes by, and before I have my treatment tomorrow, I’m just going to stick my head up and say hello with a quick blog post.

I think the cumulative aspect of chemo is starting to catch up with me because  it’s been taking even a few days into week 3 of each cycle before I start feeling “ok”.  I’ve been exhausted in a way that I haven’t felt before and that coupled with other side effects from the camptosar have made things interesting lately.  At my last treatment Dr. Richards mentioned that my white blood cell count was on the low side at 3.2.  And that’s after a full week of recovery!  How low had it been during the last treatment cycle?  I also told Dr. Richards that I was having some shortness of breath and that earned me a stop at the radiologist post-treatment for a chest x-ray.  It came back “normal”.

Despite the fatigue Dan Nies came by after my last recovery week and accompanied me on a slow (10-12 mph) 32-mile ride.  It wasn’t easy but these rides really help me to clear my head so I enjoyed it immensely.  My next planned ride will come on Saturday the 19^th at the end of my next recovery week.  That’s the Multiple Sclerosis ride that we’ve been doing in recent years for my friend Missy Gervasini.  Hopefully the weather will cooperate and Amy will have a nice easy 25-mile ride on the tandem.

As I mentioned, chemo treatment #8 for 2012 is tomorrow.  And then the big day comes the following week when I have my next PET/CT on Wednesday, 5/16.   The significance of this scan I think speaks for itself.

The gradual build up to our Mintz’s Mentschen LiveSTRONG weekend in Philly in August is continuing.  Our team is growing and hopefully our fundraising totals will start to make some significant leaps.  And, therefore, here’s my usual plea.  We’d love to have you join us to walk, run, or ride.  If you can’t swing that please consider a tax-deductible donation in support of the Lance Armstrong Foundation.  You can join or donate by clicking here.

Treatment #46 in the books

The 2012 version of my chemotherapy, specifically the schedule that I’m receiving the treatments, has been a real drag.  The biggest impact is that I’m not getting much time for a real “recovery” and this has impacted some things very tangibly.

One of those things is the frequency of posts that I make to this blog.  My guilt has had me mention this in recent posts but truthfully when my work day ends the first thing I want to do is to hit the POWER button on my laptop and to literally run for the couch.  I will try to do better since the last thing I can afford is to lose any more of the support and energy that I had been receiving from you all.

Another impact from the lack of recovery is that the solid bike riding I had been doing with rides in the 30-45 mile range seems like a distant memory right now.  Riding like that is just not physically possible right now.  The fabulous weather this past weekend got me out on my bike with Dan Nies on Saturday.  It’s important to note that I have NEVER ridden on a Saturday of a treatment week before.  Although the last few miles of the ride were an effort I thoroughly enjoyed the short but much needed 19-miler.  Thanks Dan.  We have the Multiple Sclerosis ride scheduled in mid-May and I’m confident that I’ll be able to cover the 25-mile distance in support of my friend Missy Gervasini while riding on her team, The Missy Express.

I’ll keep my usual closing mention and plea for LiveSTRONG recruitment and donations short.  The response has continued to be sluggish at best.  I’m not exaggerating when I say the weekend around LiveSTRONG is a real party atmosphere.  Consider walking or running with us on Saturday, August 18.  The cycling part of the event is on Sunday, August 19.  You can register for the event and join our team as well as make a donation by clicking here to access my LiveSTRONG web page.  Thanks for your support!

The beat goes on

I just got home from chemo treatment #4 of 2012 and before I hit the couch for an extended visit I wanted to try and get this belated status post done.

All remains status quo with treatment, etc. Side effects although challenging remain in the realm of manageable so I try not complain about them at all. I’m most bothered when nice weather presents a bike riding opportunity and when I can't pull it together for some chemo-related reason. I’m hoping that as the change in seasons really starts to kick in that I’ll be able to steal rides on occasion at the end of my work day.

Slowly but surely our Mintz’s Mentschen numbers have been increasing with regard to the number of team members and fundraising. But it’s really only been a trickle and not what we were hoping for considering our goal to try and kick things up a notch this year. I may even try to get small community interest pieces in the local newspapers as a way to help our recruitment but for those of you still reading here it would be outstanding if you could consider joining our team to walk/run (5K or 10K) or ride (multiple distances to choose from). We do train together for the biking events and will help to coach anyone that is new to cycling and/or new to group riding. Whatever type of event you choose I can guarantee that you’ll have a fantastic time and that it will be an experience to remember. The event is over the weekend of August 18-19 this year. If you aren’t able to join us please consider a tax-deductible donation. You can join us or donate by clicking here and clicking the applicable button on my webpage.

Status

For those of you that are still following along here on the blog I’m sorry that I wasn’t able to post a status update until now. The delay really has been that it was a tough week all around. It was definitely a bit strange to be back in the chair and connected to IV’s. The treatment itself was fine but the aftermath while not completely horrendous was more than enough to knock me down pretty hard.

I had hoped to be up and around by Sunday and ready for a bike ride but for various reasons that was not a good idea and Amy and I opted for a leisurely stroll on the canal towpath In Princeton. Treatment #2 was yesterday and although it may seem odd to those unfamiliar with chemo I’m generally “OK” the day after treatment. That’s why I’m making sure to get this blog update done NOW because things typically take a downhill slide from here. I’m stubborn so once again I’m hoping that I’ll be able to get out this Sunday for a bike ride.

That’s about it from here. The chemo process and juggling EVERYTHING around that schedule has begun.

As a parting note I do have to make a plea for our 2012 LiveSTRONG campaign. You can read my comments in recent posts where we’re looking to recruit new team members to walk, run, or ride with our Mentschen team this year. And, of course, if logistics or schedule won’t work for you it would be terrific if you could consider a donation. Links for all of that are in my prior posts as well as via my LiveSTRONG link in the LINKS section on the right side of this blog. Response so far has been disappointingly slow. Please help to pump up the Mentschen… and ME by joining/donating. THANKS!

Eve before

I don’t really have much to say right now but since tonight is not just any old eve before treatment moment I feel like I should at least make a post to mark the date.

Yes, as happens whenever we start a new chemo protocol I’m a bit anxious about tomorrow. Mostly it’s just fear of the unknown and that I want to quickly establish the routine I’ll need for this specific chemo protocol. Will nausea be an issue? Will taxotere affect me as it did in 2008 when I had mouth sores, lack of appetite, and significant weight loss? Will my immune system be impacted to where we’ll need to use neulasta as we have in the past? What is this 2-weeks ON, 1-week OFF schedule going to be like?

I’m not scared… just anxious. I feel very well cared for by Dr. Richards and the nursing staff. I look forward to giving Debbie, Marie, and Sharon big hugs and to get this show on the road. Dr. Richards will have to settle for a hearty handshake. Ha!!

Of course one of my biggest hopes as we get underway with Chemo Party 2012 is that I’ll be able to continue bike riding during treatment with meaningful frequency. Following the results of the PET/CT I have had strong rides of 42 and 40 miles that help me just as much mentally as they do physically. We’ll see how things go.

I’m thrilled to say that today we had two people register for our Mintz’s Mentschen LiveSTRONG team in Philadelphia. Most importantly these are two people that have not ridden with us before. This is exactly what we need as we strive for our goal of $40,000 this year. Hopefully this is a positive sign for many more that will be able to join us. Keep those cards and letters coming! And.... if you aren't able to ride/walk/run with us if you're able to consider a donation it would be greatly appreciated (yes, I haven't really been clear that there is also an opportunity to run or walk as part of the Mentschen LiveSTRONG team).

Deja vu all over again... all over again

Yes, I know that I’ve probably frustrated a bunch of people by not posting more quickly but really the past few weeks have been action packed.

First, let’s wrap up the Cycle for Survival topic. Last year the event raised a record $4.7 million and with the $6.1 million check presentation at our event early this month clearly this year had broken all CFS records. Imagine our surprise this week when we received emails broadcasting that total fundraising had surpassed $8 million! Absolutely amazing. Thanks again to everyone that donated so generously.

With 2011 as yet another year where my vacation days were used for chemo treatments I was very excited for Karsyn and Matthew’s wedding to enjoy a very happy occasion as well as a couple of days with extended family on Marco Island. It was everything I hoped for and more. It was a very unique gathering that included Erin, Bailey, and Sasha as well as Amy’s sisters and all of the Durkin family. Below is a picture of the Mintz clan from the wedding weekend taken at Amy’s sister Robin’s house.

Bailey, Erin, and me in the back. Amy and Sasha in front.

And at 7:45am on the morning after we returned from Florida I had my quarterly PET/CT. It was Valentine’s Day and since my recurrences have been like clockwork in February each year I had a sneaking suspicion for what might happen. And unfortunately I was right.

The metastases on my liver showed enough activity to where we need to start with chemotherapy again. My first treatment will be this coming Tuesday, 2/28. Amy and I met with Dr. Richards and we wound up choosing one of the chemo options that had been suggested by Memorial Sloan-Kettering when we went there at this time last year. The drugs we chose are two that I’ve had before but never together, docetaxel and irinotecan (aka taxotere and camptosar). Docetaxel is one of the drugs I had back when this all started in 2008 and it contributed to what was a challenging and “interesting” chemo experience. While I’m confident docetaxel will do its job I’m also hoping that it doesn’t kick my butt too badly. Especially since this will all be administered as two weeks on and one week off. i.e. I’ll be getting a treatment two weeks in a row before a one week break.

That about sums it up except that, of course, this recent development definitely kicks up the emotion that I have for our Mintz’s Mentschen participation in the 2012 Philly LiveSTRONG event. As usual it is in August but this year we’ve already set some big goals for our team. As you all know, we have collectively raised over $140,000 through these past 4 years of riding in Philly. Last year alone we had 23 people raise over $34,300. This year we want to reach $40,000 and to do that we’re making a plea for new Mentschen team members. Event routes range from 10 miles all the way to a full 100. I can’t predict what route I’ll be able to ride come August but I have ridden the 10-miler while in treatment before and I know that minimally I’ll be able to do that again. Please join us!! Experience level is NOT a factor. This event is a ride and not a race and we'll be preparing by riding/training together in advance. Believe me, while having an absolute blast of a time it is not uncommon for people to come away saying that it was a life-changing experience for them. And the minimum fundraising requirement is not at all difficult at only $250. Email (jhm100@gmail.com) or call me (917-533-9097) with any questions. Click here to register and join us. I'd be thrilled to have you join us.

If you aren’t in a position to ride with us please consider supporting us with a donation of any size. Heartfelt thanks in advance for your generosity! Click here to donate on my fundraising webpage.

Cycle for Survival success

The Cycle for Survival event was yesterday and it was a record-setting success. Thanks to the generosity of all that were able to donate the event raised over $6.1 million in support of clinical trials at Memorial Sloan-Kettering. Our Mintz’s Mentschen group had a great time and look forward to riding in Cycle for Survival again in 2013. I was lucky enough to have been invited to ride on the Team Fearless bike in honor of the event founder, Jen Goodman Linn (www.youfearless.com), who lost her cancer battle this past summer. Following are a few pictures.

Our Mintz's Mentschen team

Me on the Team Fearless bike

The check presented to MSKCC

As one event passes our focus turns to plans for participation in LiveSTRONG challenge and other events. We’re definitely participating as a team in the Philadelphia LiveSTRONG event in August and several of us may even go out to Davis, CA for the event there in June. Note that we are looking to up the ante this year with Mintz’s Mentschen by setting a goal of raising $40,000. Our plan for reaching that goal is to recruit more people for our team. If you’re interested in helping to raise funds to kick cancer in the face while making new friends and getting some exercise please JOIN US! Email me with any questions you may have but really there’s no “risk” on your part. Ride distances range from 10-100 miles and the financial commitment is that you raise a minimum of only $250. We will be riding together on weekends to prepare for these events and will train you physically and with all that you need to know so that you are ready on event day. PLEASE join us now so you can maximize your training and fundraising lead time before the event. If you are ready to JOIN just click here and then on the “Mintz’s Mentschen” link to register.

The next week will be a bit of a whirlwind since I’ll be traveling for work, then to Florida for a wedding the day after I return home, followed by my PET/CT the day after I return from Florida. As always, I will share the results of the scan here as soon as possible.

It Still Works!

Hey, hey!! No, I’m not referring to what you’re probably thinking. Let’s keep it clean! On Tuesday I had a regular 6-week visit with Dr. Richards and I always get that “it still works!” feeling of relief when they access my port and I see the blood flow into the catheter. Oh, the small pleasures. LOL. Port insertion/removal were not my favorite procedures so as long as this one keeps on ticking I'm happy.

Dr. Richards wrote me the prescription for my next PET/CT and I have already scheduled it for February 14^th. I didn’t specifically choose to have it on Valentine’s Day but that will be our first day back after a family wedding in Florida. I’m really looking forward to have our family together for such a fun occasion, even if it’s only for a weekend.

Cycle for Survival is 2 weeks from today. Donations from family and friends continue to come in and I can’t thank you all enough. I wish the event itself was a little closer to home but Long Island isn’t that far away and the cause is more than worth the effort.

I’ve really been itching to set some more significant goals for 2012 but it’s so hard to plan or commit to anything while thinking that the results of my next scan will have me back in treatment. Right now I’m focused on February 14^th and I’m hoping that my chemo vacation gets extended. We’re still also thinking about the Tour de Hot Chocolate and when that might happen. Time will tell. We're now having some complication due to winter precip but hopefully the weather will cooperate and I'll be up to the challenge sometime soon.

No Rules

I hope that 2012 has gotten off to a good start for everyone.

I have a routine appointment with Dr. Richards next Tuesday for a port flush and I should even get my prescription for the February PET/CT. It would be good to get the Rx because I’ll get my choice of date/time when scheduling the actual scan. Not that I haven’t been through this just a few times before but I’ll still be a bit anxious with hoping that my chemo vacation won’t be ending so soon.

Although February of the past 4 years has rhythmically coincided with the start of chemo I am hoping to break that streak. Since beginning this break from chemo following my November 1^st treatment I have been pushing myself on the bike (as I have mentioned more than once…. I know). I have plunged ahead with little regard for thoughts of, “it’s a bit too cold to ride…” or “there’s no way you should be trying to ride this far…”. After a ride or two where I stepped single-ride mileage up into the high 20’s I took significant leaps to a couple of rides of 46-miles before getting sidetracked by the holidays.

This past Saturday I was back on the bike and although I had no business even attempting it I was hoping for a 50-miler. We wound up finishing just short of that at 49 miles but it was warm enough that I was compelled to do it in SHORTS! You should have seen the look on the face of other riders as we passed them on the road. It made me feel like a real rebel. Ha!

I have leveraged the knowledge of my body that I acquired in my youth while running track in high school and college. I know what will and won’t cause me harm and getting a little tired ain’t gonna hurt me (not too much anyway…). I’ll continue enjoying my “no rules” approach to cycling for now and hope that my 3 month break turns into at least 6. Please come out and join us! Shoot me an email if you’re interested.