Simple pleasures

The weather didn’t quite live up to what was forecasted for yesterday but I was able to seize the opportunity of a relatively warm and DRY Saturday during a period where I’m feeling well for a bike ride. Yes, you read the correctly. Dan Nies accompanied me yesterday for a short and flat 20.5 mile ride that, as you can imagine, was totally enjoyable. The fresh air and exercise was terrific.

If the weather cooperates I may actually be able to do it again next Saturday. The next treatment doesn’t begin until Thursday, March 26th.

White blood cell count looking good

So, there’s good news and bad news…..

First the good news. The neulasta injection I had last Friday is doing it’s job and my white blood cell count was 7.5 when I had my office visit with Dr. Richards yesterday. That’s a far cry from the 0.8 that played a part in landing me in the hospital. Considering that normal range is 4-12 I feel “safe” for the remainder of this 3-week treatment cycle. I'm still on Xeloda through next Wednesday.

The bad news is that this next treatment is likely to see a significant change in dosage. I’ve looked down the barrel of a dosage increase before and it all worked out fine so I’m not shaking in my boots. I'm definitely a little nervous though since I know that the dosage change will likely push me into the downside of side affects. I’ll be riding those zofran pills hard to get me through it!! LOL.

Sasha rode shotgun on my visit to see Dr. Richards. I enjoyed having her there to meet Dr. Richards, my favorite nurse Beth, and the office staff. Dr. Richards even gave her a quick tour of the treatment area while I was working with the office staff to deal with insurance company junk. And for those of you that are wondering, NO, Sasha didn’t watch when Beth accessed my port to take the blood chemistry. LOL!

This next week should be quiet although I’ll post any news that’s fit to share. The one bit of excitement will come on 3/19 when we head into Manhattan for Amy’s birthday and to partake in an Allman Brothers concert at the Beacon with our friends Elisa and Joe.

Treatment #2 Underway

Here's a quick post to let you know how things are going now that treatment #2 has begun.

Dr. Richards dialed back the dosage a bit for the two IV drugs, Epirubicin and Oxaliplatin. We had already gone with a scaled back dosage for treatment #1 because at the time, as we all now know, I had a cold and slightly lower white blood cell count. The idea for round #2 is obviously to try and keep the treatment from having the same extreme affect that it had last time on my white blood cell count. In addition, we decided to be very assertive with using Neulasta as a WBC booster and I'll be going back to his office on Friday, 3/6 at 3:15pm for a Neulasta injection.

So... that's the deal. At the moment I'm feeling generally OK. A bit washed out and tired but with a little help from a zofran pill I'm mostly keeping things even keel right now.

One thought that just came to mind is that people have been asking me about the college decision for Sasha and where that stands. As happened with Erin and Bailey when they made their decisions there was a "this is it!" moment on one of our recent visits. And that occurred at Colorado State in Fort Collins, CO. The campus was terrific and Sasha was accepted as one of 75 incoming freshman to the Bio Medical Sciences program as part of their honors program. That this all included a nice chunk of $$ also didn't hurt, lol. Can't let this one go... the final part of the tour had us visiting with an academic counselor in the bio med program as well as with a faculty member. Sasha and good ole dad were able to endure, with flying colors, the professor taking us through a dissection lab where there was not only table after table of dogs that were actively getting dissected but there were also a horse and ox hanging from chains and well on their way to full dissection. Yep, quite an unexpected experience for sure.

More status on the chemo front as things develop in the coming days.

Thanks to Amy's Army and everyone who has reached out with words of support. I enjoy and appreciate every bit of it.

Please remember that the Mintz's Mentschen is once again mobilizing for participation in Lance Armstrong Foundation LiveSTRONG Challenge events this year. Right now we're registered for the August Philly event and I hope to ride, minimally, the 10-mile distance as I did last year. There's a lot of time between now and then so hopefully I'll have the opportunity to go a bit further this time around. At the top of this page there's a link where you can go to my personal page to make a donation. Given the state of the economy I'm hoping to get lots of small donations this year. Any and all donations will be greatly appreciated.

LiveSTRONG!!
Jack--

Time that wasn't

OK…. Let me see if I can catch you up on the events of the past two weeks.

As I had indicated in my last blog posts, things had reached a frenzied pace as we tried to complete our final college campus visits with Sasha in advance of my starting chemo. We returned from Colorado on 2/10, I had the medi-port inserted on 2/11, and then chemo began on 2/12.

Although the chemo process kicked off without a moment for a breather things were really very much under control. Nausea was controlled via the usual “as needed” use of zofran and decadron and the new side affects we were seeing from the new chemo protocol were little more then a nuisance. I was getting some minor tingling in my forearms/hands and issues related to touching/drinking/breathing cold were minor since I was working from home.

However, things started to get a bit interesting toward the end of that first week of chemo. Apparently the simple cold that I came home from Colorado with decided to “have a party”, as Dr. Lampert said, when chemo drove my white blood cell (WBC) count to a low of 0.8. By Friday, 2/20 my temperature hit a high of 102.3 and initially we were able to keep it in check with Tylenol. I ran a temperature on Sunday and then on Monday, 2/23 my temperature hit 100.9. We called Dr. Richards office for an emergency appointment and I kind of knew what was going to happen next. Dr. Richards said that if I was experiencing either a fever OR abnormally low WBC counts that we could have avoided a hospital stay. But that I had BOTH there was no way he could avoid admitting me to good ole St. Peter’s University Hospital.

We arrived at St. Peter’s late Monday, 2/23 and the process of poking, prodding, and constant IV antibiotics began. I had blood cultures taken as well as both a chest X-ray and CT scan to take a closer look at my cough. The oncology floor at St. Peter’s is brand new and because of my low WBC count I was classified as “neutropenic” and given a private room. As hospital situations go I’d view this as about as cushy as it gets. The oncology nurses were all absolutely terrific. In addition to the antibiotics I was also given daily injections of Neupogen to boost my white blood cells as well as a blood thinner to avoid blood clots.

The punch line is that the CT scan showed that I have pneumonia. Luckily the consensus of the doctors yesterday was that there was no reason to keep me in the hospital and they discharged me on Friday, 2/27. My WBC count had come up into normal range and I hadn’t run a temperature since early in the week. I will be on two different oral antibiotics for another 10 days and I’m trying to make sure that I’m coughing with gusto to keep things loose and to break things up as best I can.

I guess another punch line is that chemo treatment #2 will remain on schedule for this coming Thursday. As has been discussed with Dr. Richards, and the other doctors from his group that visited me this week, we will be tweaking things a bit to try and manage the impact of this chemo protocol on my WBC.

Another significant tidbit to pass along is that I’m officially back in hairless status. I noticed that my hair had started to fall out while I was in the hospital. Although I had an inclination to shave my head while I was there in the hospital there really was no way to do that very comfortably. Amy helped me with it this morning and once again I look a lot like the caricature on our Mintz’s Mentschen cycling jersey.

So, I’m sorry for the lack of information these past two weeks but you can see now how crazy it’s been. I will try to do a better job going forward. But thanks to everyone for the emails and texts as they helped to keep my spirit up.

Woops... forgot this one.

I knew that I’d forget something in my long blog post yesterday…

Last weekend was going to be my last opportunity for some outdoor cycling for a while so I definitely didn’t want to miss it. Since we were leaving for Colorado early on Sunday that left only Saturday for the ride. The weather forecast was for some warmer temps that on Saturday should have been in the mid-40’s so I was excited to hit the road as it had been a full month since I had been out for a ride.

Dan Nies and Stephanie Tobler joined me for the ride at Washington’s Crossing but of course the weather didn’t quite live up to the forecast. I think when we began the ride the temperature was a slim 31 degrees and mostly cloudy. As you might expect a few choice words were tossed around as we began the ride.

But, as is almost always the case the ride turned out to be an excellent one. We covered 26 miles including a couple of Washington’s Crossing climbs and by the end of the ride the sun broke through to warm us up. Bottom line is that the ride was everything I had hoped for. An opportunity to be on the bike, enjoying the outdoors, getting exercise and feeling alive, and most of all experiencing that all with good friends.

Priceless… LiveSTRONG.

Here we go...

Yep, I know that it’s been a while and a lot has certainly happened since my last post. I’m going to try and go through it in chronological order.

Last Thursday my friend Ed McNeill, president and owner of the Gold’s Gym in Lawrenceville, NJ, had a spin bike delivered to my house. It was yet another moment where a simple “thank-you” just didn’t seem to cut it. Hopefully my gift of an “All Jacked Up” cycling jersey will help in that regard and also as he learns that he’s an honorary Mintz’s Mentsch. I hope that the bike enables me to get some exercise while I can’t be out and exposed to the public or the cold since the Oxaliplatin has side affects that are adverse to not only cold winter air but also cold drinks and anything cold to the touch like car doors, etc. Really weird.

This past weekend I went with Sasha and my mom to visit Colorado State University. The college decision had come down to NC State vs. Colorado State so this was a very important trip. To make a long story short it was a successful trip since the campus was great, we met with some faculty, and then we found out that Sasha got accepted to the honors program. So the decision itself became a no-brainer. And needless to say my aunt and uncle in Denver are thrilled that they’ll be able to have Sasha nearby since Fort Collins is only about 1 hour 15 minutes north of Denver.

Miraculously the weather cooperated not only with the flight out to Denver but also on the return trip so our flights were all on time. This was important because I had my medi-port insertion procedure scheduled for 7:30am on Wednesday. We got home from Colorado at around 11:30pm Tuesday and Amy and I were up early for the trip to New Brunswick and Saint Peter’s University Hospital. It was definitely all a bit surreal because the memories are still pretty fresh from the first pass at this. Having been there before we had what felt like an “Easy Pass” at registration since they just waved us on to head down to the radiology department. The nurses all remembered me and we had a chance to catch up on what has happened since they last saw me. It definitely made the process of my second port insertion, a procedure that I did NOT like the first time around, much easier to take. I definitely felt like they all cared about me as a person. Even the doctor this time around, Dr. Gibbon, stuck his head under my tent draping in the operating room to introduce himself, to describe the procedure, and to let me know that I should speak up if I was too uncomfortable. I assured him that I would do that but this time around the drugs were much much better. I was awake throughout but I do think that I caught myself snoring once or twice. All in all much easier to endure then last time.
A big aspect of the medi-port procedure though was the question of “where were they gonna put it?”. You may remember that the big reason my last one was taken out was because of the blood clot in my neck near the port catheter. If not for the clot there’s a chance that I’d still have that original port. So I was a bit nervous that it might get placed in the same spot. I spoke in detail with all of the nurses and as soon as they took me into the OR they checked out the original site with ultrasound. The technician opted to get the surgeons opinion and without even checking the ultrasound the surgeon said that we’d use the other side. So, the port is on my left side this time. I’ll have matching scars now… cool.

And then no rest for the weary as the chemo began yesterday. No tears… not even close. I guess I’ve had way too much time to prepare for it mentally. No doubt that it was strange. It was definitely weird to have them accessing the port again and then to be sitting in the treatment chair for nearly 5 hours while the various IV’s dripped away. Aside from getting a bit “green” it went well. I don’t think I ate enough in advance of the treatment so I think it got my stomach a bit unsettled. They gave me some IV pepcid and I felt better before too long.

The return to the treatment room was also, as is so often the case, an opportunity for reinforcement of the “cancer sucks” lesson. It’s been nearly 7 months since I had been there and it was very sobering to see familiar patients. The woman sitting next to us and that Amy spent some time talking with is now having her 5th bout with cancer. Please know that these are the people and the cause that the Mintz’s Mentschen cycling team raises money to help.

In no time flat Amy’s Army is in full swing. The muffins and cards that have come already have been terrific. I’ve said it before and I’ll keep on saying it, every email and card means a great deal. Thank you all so very much.

No pump!!

Amy and I trekked into Manhattan and saw Dr. Meng at MSKCC bright and early today. The mission was to discuss the chemo protocol and they took us right on time for our 8:45am appointment. You will probably be surprised when I say we were out of there in less then 15 minutes. No joke, we were out of there by 9am. I guess that despite this being serious stuff it’s still just that cut and dried. We asked some questions and we were back on the train heading back home before we knew it. A nice side benefit to the trip was breakfast at Ess-a-Bagel since that allowed me to kick a lox craving that had been building up for a while. LOL.

As I just told my father, just like there’s no such thing as being a little pregnant you either have cancer or you don’t. And I have cancer… BUT… It’s true that I don’t have the same physical symptoms as last year and that there are fewer cancer lesions to treat this time around. Dr. Meng made it clear that my complete response last year is a bit uncommon and, therefore, significant. He said that there’s every reason to expect the same general response this time. However, he also said, as Dr. Richards has mentioned before, that cancer is never truly “cured”. It’s possible that this same cycle of having it go into remission and then to come back will repeat itself. He explained that these treatment cycles may kill 99.99% of the cancer and to the point where remaining cancer cells are undetectable by PET or CT scans.

OK, here are the details for the chemo protocol we’ll be using. As before it will be a 3 drug protocol where one is new and the others are related to two that we used last time around. The protocol is called “EOX” and uses, Epirubicin (drove requirement for the MUGA scan), Oxaliplatin (instead of Cisplatin last time around), and Xeloda (instead of 5FU). These drugs have some unique side affects as well as all of the same ones I had to deal with last time around. I guess it’s the variety that will make this “interesting”. LOL. The one bit of very good news (after all there has to be SOME kind of good news, right?) is that the Xeloda is administered orally. Therefore, I will NOT have the 5-day pump as I did last time for the 5FU. Not having to sleep with, shower with, and drag that pump around will be terrific. Although not having Lana come to remove the pump each treatment will be missed (no comments from the peanut gallery….LOL).

That’s about it. The medi-port gets put back in next Wednesday morning and the first chemo treatment will be the very next day. This was the same scenario last year. In fact, I’m exactly 2 days ahead of schedule from last year. With a bit of luck I’m hoping to not have to repeat this NEXT year!! LOL.

Ramping up....

Sorry… didn’t mean to keep you all hanging on the edge.
And I’m sorry if this doesn’t read all that well but I’m kind of tired at the moment. However, I want to get this info out to everyone while I have the chance.

The pace is quickening a bit in the steps leading up to treatment. Since my last post I have had blood work done at Dr. Richards office for pre-mediport testing and office visits with gastro docs Dr. Fidanzato and Dr. Dahr.

It looks like the endoscopic ultrasound may get postponed since it won’t really have any bearing on the initial treatment protocol. But I am scheduled for both a MUGA scan and MRI of the abdomen on Monday. I’m glad that we were able to get these through insurance approval so quickly because we’ll be able to take the results with us when we go to Sloan-Kettering next Wednesday. It’s when I see Dr. Meng at MSKCC that I expect to hear about the treatment protocol he’s been discussing with Dr. Richards. As I had mentioned in my last post the chemo protocol will be different this time around so I’m eager to learn about the drugs that we’ll be using and just as importantly the details for how they’ll be administered. My specific interest there is to know whether I’ll have to use a pump as I did last time. Wearing the pump for 5-days for each treatment was nasty.

Mixed in with this whirlwind of tests and doctor visits we are squeezing in the last two important college campus visits for Sasha. We’re heading down to North Carolina tomorrow to visit NC State and the following weekend to Colorado to see Colorado State. She has been accepted by both schools and they are both on the short list for a final decision.

We return from Colorado on the evening of February 10th and I’m scheduled to have the mediport put in on the 11th. I’d expect that chemo will begin on the 12th or 13th.

As I’ve asked before, are we having fun yet? LOL.

Yeah, I’m still kind of angry about all of this but generally I’m in the same positive mindset as last time. I’m trying to get myself setup to be able to get some exercise here at home. In that regard an old college track buddy of mine, Ed McNeill (owner of the Lawrenceville Gold’s Gym), is helping to set me up with a spin bike. He said that he’s going to give it to me. How cool is that!?! He doesn’t know it but that immediately makes him an honorary Mintz’s Mentsch. LOL

To be continued…

Sunday, January 25th, 2009

At this point many readers of my blog are already aware of this but for those that I haven’t managed to call or copy on an email yet….

I know this comes totally out of left field but I need to clue you in on the fact that as of this week I'm in cancer recurrence mode.

I had a PET/CT scan on Monday the 19th that showed a couple of spots that require attention. One is the "original source" of the cancer at the GE junction. It is a bit more prominent of an issue then when it also showed up on my October scan. In October I had a PET/CT that flagged this same spot and I followed up with an endoscopy/biopsy that proved negative so all was good. At this moment it's not entirely clear just how significant this particular spot is but there's now mention of "slightly more mass-like" whereas in October it was just "increased metabolic activity".

There's also a spot on the liver (there was one on the liver last year as well...) that the PET/CT report has flagged as cancer.

So it's very much like deja vu all over again. We’re in the process of scheduling an MRI as well as an endoscopic ultrasound... With those in hand we venture back to Sloan-Kettering on February 4th since they drove the chemo decisions last time and since Dr. Richards said we wouldn't be using the same chemo protocol again. The idea there is that while the cancer went away it also came back... that maybe we should try something different this time.

From what I know right now, and based on my extensive medical background (LOL), we can view all of this as somewhat "less" then last time around. Bottom line though is that while there's still a bit of testing and diagnosis to be done it seems clear that I'll be on some type of chemo in the near future.

More info to follow as it becomes available.

Happy Holidays

Sorry for waiting until the last second but it wouldn't be right if I let the holiday season slip by without wishing everyone a happy and healthy. I hope that you're all doing well, enjoying the season with family and friends, and looking forward to a terrific 2009. Have no doubt, I am!

All is status quo with me medically. I feel good and look forward to my January 7th office visit with Dr. Richards. My next PET scan will be scheduled at that time and as I've mentioned previously those results will be input to discussions with Dr. Fidanzato.

About the only other notable news is that I actually had to get a haircut this past Sunday. Yep, lots of strange emotions related to that simple task. On one hand it was funny because there is an awful lot of skin still showing through up top and then too, as you'd imagine, it prompted a lot of emotion as well. I'm glad that I went for the haircut by myself as I didn't need to be embarrassed by the few tears that came while I was driving there.

So.... here's a current "fuzz" picture. It's a little longer around the sides then the last picture I shared. I fear that the moustache just isn't going to make a return. Dr. Richards is trying to be supportive but at this point we get some laughs out of it. In the big scheme of things it's not all that important to me.

Join the Mentschen!

I'm sorry for the short notice but TODAY presents an opportunity for you to join the Mintz's Mentschen TEAM and to register for LiveSTRONG 2009 at a discount.

If you go to www.laf.org you will see that the Lance Armstrong Foundation is offering a one-day only discount on 2009 LiveSTRONG event registration. The discount code is shown there. Click into the August Philadelphia event and be sure to select "Join a Team". Choose Mintz's Mentschen from the pulldown list as Dan Nies has already set us up.
TUESDAY, 12/2 update: We have at least 11 people registered for the LiveSTRONG Philly event. Please know that registration is only $50 if you missed the discount yesterday. Please join us!

We already have 4 members registered (including me)! And this year I'm not whimping out on the 10-mile ride. It will be the whole enchilada for me this time around.

Please join us! As I've described before, we have many years of experience with training even novice cyclists for 100-mile events. And you can always opt for one of the shorter event routes since, as you saw with me this year, there's even a 10-mile option. You can wait until August 2009 to choose the actual event even though the registration process asks you to make your choice right up front.

JUST DO IT... it will be an experience of a lifetime. I'm looking forward to hearing from some NEW Mentschen.

Jack--

Happy Thanksgiving

My visits to Dr. Richards and Dr. Fidanzato this week while run of the mill also managed to provide me with an unexpected surprise.

The only new information that I got from Dr. Richards is that my next PET scan will be in mid-January. But first I get to see him on January 7th for my next follow-up visit.

Dr. Fidanzato was able to share some endoscopy pictures that I hadn’t seen before. There wasn’t anything additional that I needed to know about this last endoscopy but the new set of pictures, when viewed side by side with the originals from January, provided me with a clear tangible image of the positive change that has happened. As Dr Fidanzato said, “somebody must really love you”. I just nodded my head in full agreement.

We then discussed the endoscopic sonogram that he is recommending. Since there is no real urgency for this test our plan is to wait for the January PET scan to see if it shows any activity. He thinks that the October PET scan showed normal cell re-growth in the esophagus and since this re-growth will be of finite and relatively short duration the January 2009 PET scan may show no unusual activity. Therefore, I have an appt. with Dr. Fidanzato on January 29th and we can decide then whether the endoscopic sonogram is even necessary.

The surprise was when he questioned the need for me to continue taking Prevacid. Since there are no symptoms to treat and since the endoscopy showed no evidence of reflux then there is no real reason to continue with the Prevacid. Therefore, I’m starting a weaning process that should have me completely free of medication in 2-3 weeks. It was only one pill a day but to be medication free will be very symbolic.

So, on that note I want to wish all of you, and your families, a Happy Thanksgiving.
Lots of hugs and kisses.
Jack--

Mentschen available on video

Dan Nies, the ring-leader and person that is responsible for creation of Mintz's Mentschen, carried a video camera with him throughout the weekend of the Austin LiveSTRONG event. In total there are 7 videos that have been posted to YouTube and that document the festivities leading up to the ride as well as during the actual ride itself.

The 7th video clip is the final segment of the ride and includes special recognition that happened at the finish line for the whole Mentschen team. Note that this video has received an official "3 hanky rating" by me.

Here's a link to the 7th video. Links to the other 6 will also display on the YouTube page.

The results are in

No.... I'm not referring to the presidential election.

Although the pics I had posted last week had Dan Nies convinced that I am pregnant, Dr. Fidanzato's office called late yesterday afternoon to tell me that the biopsy results came back and that it is benign. I have an appointment with him later this month to discuss yet another endoscopy. He is recommending an endoscopic sonogram to take a look "below the surface" of the esophagus at the GE junction. That appointment is on 11/20 and I'll be seeing Dr. Richards again on 11/19. So... more info to come from those office visits.

The Austin LiveSTRONG event was at the end of October and just as happened with the Philly event it was a special weekend. What was very cool is that it was even special for me despite my inability to take time off and participate myself. Cell phones, email, and text messages kept me in touch with the Mintz's Mentschen TEAM throughout the weekend. And Dan Nies took a series of videos with a handheld camera through the weekend. Those have been posted to YouTube and I'll provide links on this blog when I have a bit more time.

We've already started talking about potential cycling events in 2009 but for now we'll continue to bask in the glow of a Mintz's Mentschen LiveSTRONG fundraising total of over $53,100. Wow.