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.
Saturday, February 28, 2009
Saturday, February 14, 2009
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.
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.
Friday, February 13, 2009
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.
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.
Wednesday, February 4, 2009
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.
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.
Subscribe to:
Posts (Atom)