OK everyone, here’s the latest on my situation.
We met with Dr. Loggie last week (May 27th) for a follow up consultation. One of the things we had been frustrated about was that no one has been able to give a clear choice as what to do next. Fortunately, Dr. Loggie was very forthright and “confidently” suggested a surgery to remove two spots that he believes are causing the rise in tumor markers, and could possibly cause problems down the road.
The two spots are on the spleen and the mesentery, which is near the bowels. Dr. Loggie believes that if there is not much scar tissue, it should be a fairly straightforward surgery. However if there is too much scar tissue, and he doesn’t think he can remove the tumors, he says I still have options.
The option is a drug called Erbitux, given with chemo. It turns out that my tumor was tested to see if had mutated. Fortunately for me it hadn’t, so Erbitux is a possibility.
The surgery is scheduled for July 28th in Omaha, NE. I will be admitted to the hospital July 27th for testing. It is estimated that I will be in the hospital for 7 – 10 days. Dr. Loggie will also want me to stay in Omaha for a couple of weeks (which includes the hospital stay). If I end up doing better, I’d be able to leave earlier.
As stated in the title of this post, this will be my fourth surgery related to cancer. Hopefully it will be the easiest.
As of now, I am doing OK. The neuropathy in my fingers and feet are still bothersome, especially with the cold. My finger tips are effected the most, making everyday simple tasks a bit more difficult. The neuropathy also causes easy bruising.
So, that’s the story so far. Your prayers of course are always appreciated.
Wednesday, June 03, 2009
Saturday, April 04, 2009
Best Card Ever
Just wanted to share with you all what I think is probably the best card I ever received. It was from a couple in our synagogue.
On the outside is a cartoon picture of an owl sitting on a branch and it says, "One day, you'll look back on all of this with the wisdom that distance bestows and you'll say..."
.
.
.
Open card...
.
.
.
"Wow, that sucked."
I'm still laughing...
On the outside is a cartoon picture of an owl sitting on a branch and it says, "One day, you'll look back on all of this with the wisdom that distance bestows and you'll say..."
.
.
.
Open card...
.
.
.
"Wow, that sucked."
I'm still laughing...
Wrapping my head around the “prognosis”
Roni writing.
So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.
I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.
Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.
BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.
But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.
So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.
If you are confused after reading that, then welcome to the club.
So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.
In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.
We appreciate all of you who join us in prayer and support us with your words of love and encouragement.
So, what I was hoping would happen with this second consult with a specialist is that this doc would have a better idea of what is going on now with this disease, what the expected rate of progression is (or is not), and that he would be able to tell us how to “fix” it. But we came away from the consult with more questions than answers.
I’m grateful that this doctor admits when he doesn’t know. I’m frustrated by how much the doctor doesn’t know. Not his fault. The way that the disease has recurred in Kevin is “confounding” – doc’s word. And, his opinion matches that of the first specialist we consulted with.
Dr. Loggie explained that what he sees on the CT/Pet scans is not consistent with the tumor markers, which are not consistent with the original diagnosis and the way that cancer typically recurs. Dr. Loggie told us that if he were going solely by the scans, which show little changes over the period of a year, he would assume Kevin has the least aggressive form of the disease. However, the change in tumor markers suggests that there is maybe something a little more aggressive going on. But, what he would expect from Kevin’s history is that the disease would have recurred with the most aggressive form (signet ring cells) that was present five years ago. But, he knows that hasn’t happened because as he said to Kevin, “You’re not dead.” A little blunt, but effective in getting the point across.
BTW, I believe that the reason the signet ring has not recurred is because G-d healed that five years ago. When viewed through a purely scientific lens -- confounding. But healing from G-d in answer to prayer is an explanation that makes sense to me.
But back to "prognosis": Both specialists also agree that another curative surgery like the MOAS Kevin had in 2004 (complete cytoreduction with heated chemo wash) has been ruled out as too risky and not likely to be successful due to too much scar tissue, problimatice placement of tumors, etc. And while chemo can slow progression, it has not ben known to cure this type of cancer.
So, here’s how I’ve been best able to wrap my head around it. It’s kinda like you’ve learned that there is a bomb strapped to your body that there’s no way to remove. The bomb has a timer, but no one knows when it’s been set to go off. Not only that, there’s some evidence that the bomb maker was completely incompetent and the bomb may never go off, but no way to know for sure. If you try to disarm the bomb by cutting the blue wire (complete cytoreductive surgery), there’s a good chance that the attempt would prove fatal but a very poor chance that you would disarm the bomb. You could keep it from going off for a while (chemo), but you have to trade quality of life indefinitely to do so.
If you are confused after reading that, then welcome to the club.
So in light of all the “confounding” information, I love how the doctor is approaching Kev’s case. He is not trying to fit Kevin's atypical case into a typical protocol. He wants to study it more and spend some time thinking outside of the box and exploring every option. He’s going to look at two additional tumor markers, besides the two that we’ve been tracking, and wants to see what happens with the tumor markers during a two month “vacation” from chemo. We’ll meet with him again in two months, at which time will see if the doc has a better idea of what is going and together explore a hopefully wider range of options.
In the meantime, we continue to pray for more healing as well as wisdom for ourselves and the doctors. We still plan to meet with a medical oncologist to see if perhaps a more maintenance, less life-disrupting, chemo regimen is one option.
We appreciate all of you who join us in prayer and support us with your words of love and encouragement.
Thursday, April 02, 2009
Doctor's Visit Update
Tuesday started like every other day. Roni left for work, and I woke up about 8 AM. I checked my email, surfed some of my favourite conservative blogs, then laid on the couch eating bon bons and watched Oprah. OK, you got me. I didn't really watch Oprah, and we don't have any bon bons in the house.
I was supposed to pick up a prescription from a pharmacy about a half mile away and was wise enough to call first to make sure it would be ready. Glad I did because it wasn't. They said they had called the doctor to get him to send a new prescription and was waiting to hear back. I then called the doctor's office and they said that if the pharmacy called them, they would OK the refill. So I called the pharmacy and told them to call again. Which they did.
I then went to get a haircut and beard trim, stopped by the store and picked up some snacks for our plane ride to Omaha, then stopped and got some lunch.
As I was finishing lunch, I got a message from United airline saying our 6 PM flight to Chicago (on our way to Omaha) was canceled due to mechanical problems. Great. I then spent the next hour or so calling the airline and getting a new flight. The only problem there is that the only flight they could get us on left an hour earlier, so I had to call Roni and let her know. By this time, I only had a few minuets to get our bag and laptop, and leave for the pharmacy (and hope that they had in fact called the doctor for the new prescription.)
I walked to the pharmacy, which included taking about a hundred steps (and I NEVER exaggerate) down the hill. As I have not had a lot of exercise due to the chemo side effect of fatigue, this was not as easy as it sounds. Needless to say, even though it was all downhill, it still worked muscles I haven't worked in a long time. I waited about 15 minutes for the prescription (which was ready), called for a car to the airport, and made it there in time. Roni had arrived there just a few minutes before me, and as I had checked in online, I already had our boarding passes. We headed to the gate, and guess what? This new flight was delayed and it ended up leaving after when our first flight was supposed to have left. We flew to Chicago Ohare, where we were to catch a connecting flight to Omaha. And just to make life more interesting, that flight was also running late, and we left Omaha over an hour later than we were supposed to. We arrived at the hotel about 11:30 PM tired but glad to finally be there.
In the morning, we had a quick breakfast with Roni's cousin whom she hadn't seen for years, and I had never met. We had a good time catching up and talking about life.
At about 10:15 AM, we checked out of the hotel and walked over to see Dr. Loggie. Unfortunately, he was seeing another patient, so we didn't get to see him until about 12 noon. The bad thing about this is that our flight was scheduled to leave at 1:30 PM, which meant we were a little rushed in our consultation
Holly, Dr. Loggie's PA, took my vitals, which were pretty good. Blood pressure was good. Weight was fine. Temp was normal. Heck, if it wasn't for the cancer, I'd be in pretty good shape.
I was then asked to put on a gown and wait for the doctor.
Dr. Loggie came in and did a quick examination, which included the always fun anal examination. Kind of reminded me of the time I was abducted by aliens. :-)
We told him what Dr. Esquivel told us (that he didn't really know what was going on with me, and besides not recommending surgery, didn't have much else to recommend). He then asked if we had seen the scans, and since we hadn't, brought us into another room so he could explain what he saw.
The good news is that he did not recommend surgery either. The bad news is that he too said he did not understand what was going on with me. He said that according to the scans, he did not see anything of great concern, but was curious as to why the tumor markers were rising, even if they were not rising dramatically.
One thing he did mention is that with my original pathology report, which included signet ring cells, he was still amazed that I was still alive (something that Dr. Esquivel also mentioned) and looking as well as I do. While this was comforting, the fact that no one could tell us why the tumor markers were rising was still a little disconcerting.
His recommendation for now was to wait a couple of months, get another CT scan, another set of tumor markers and come see him again to see if anything changes and then go from there.
As we were in a hurry to catch a flight home, one of the ladies that work in the cancer center gave us a ride to the airport. When we went to check in, we were told we were too late, but were given a boarding pass and told to race to the gate in the hope they were let us on.
We went through security, and Roni raced to the gate to let them know I would be there soon. Of course "easy" wasn't on the menu. Security took our bag, went through it and took out all of our 3 oz containers because they weren't all in a separate bag. They did this a couple of times, to make sure they got everything. While this was not a problem leaving NY, I guess TSA in smaller airports like Omaha have more time on their hands. Needless to say, we missed our flight.
Fortunately Roni had already got us seats on another flight that was supposed to leave about 3 PM. That gave us time to get some lunch and relax.
We were supposed to fly from Omaha to Chicago, then from there to Washington DC, and from there to JFK. Because we missed our first flight, we also missed our connecting flight out of Chicago. This turned out to our advantage because we were able to get on standy on a flight directly to La Guardia (instead of flying to DC, then to JFK). We thought this was great because we would get home sooner. As luck would have it, this flight was also late, and because La Guardia was experiencing bad weather, flights arriving there were being delayed, which meant we left Chicago about an hour and half later than we were scheduled to leave.
We finally landed in La Guardia, caught a cab and got home about 9:30 PM. After all the traveling travails we have had in the past week or so, we were glad to be home and looking forward to not having to fly again for at least a couple of months.
So for now, concerning the cancer, we are no closer to determining a plan of action for this recurrence, but we feel comfortable that we have good, qualified people on our side who are working with us to keep me alive and give me a good quality of life. And for now, we just keep living, and enjoy life the best we are able.
One of the hard parts is trying to plan for the future. My disability runs out in a week or so, which means that my severance (from being laid off from work) will soon kick in. Does that mean that I start looking for a job? Plan for more chemo or some other treatment? How will any treatment effect my looking for a job, or if I got a job, would it be put in jeopardy because of my cancer? These are questions we have no answer for.
One thing we do know from experience is that G-d has been with us through all of this. We don't know what the future holds, but we do know that G-d has led us through many hard times before, and all we can do is trust in Him that He will continue to guide us through this current battle.
Of course because of all the walking I did on Tuesday, my legs are aching. Fortunately it is an ache from not exercising and not from anything that should cause concern. I am also starting to get some energy back, so slowly but surely I hope to get back into shape and get ready for whatever comes next. Spring is also coming and it is warming up here in NYC, so I am able to get out more and get some fresh air. It's still not as warm as Jamaica was, but it's better than the frigid cold we had during the winter. I'm looking forward to getting out more, getting some exercise and getting back to living. And until we know more, that's what I'll do.
I would also like to thank everyone for your prayers, well wishes and good thoughts. Your love and concern are felt deeply by Roni and me and we cherish all of you. We'll keep you updated as we learn more.
Kevin
I was supposed to pick up a prescription from a pharmacy about a half mile away and was wise enough to call first to make sure it would be ready. Glad I did because it wasn't. They said they had called the doctor to get him to send a new prescription and was waiting to hear back. I then called the doctor's office and they said that if the pharmacy called them, they would OK the refill. So I called the pharmacy and told them to call again. Which they did.
I then went to get a haircut and beard trim, stopped by the store and picked up some snacks for our plane ride to Omaha, then stopped and got some lunch.
As I was finishing lunch, I got a message from United airline saying our 6 PM flight to Chicago (on our way to Omaha) was canceled due to mechanical problems. Great. I then spent the next hour or so calling the airline and getting a new flight. The only problem there is that the only flight they could get us on left an hour earlier, so I had to call Roni and let her know. By this time, I only had a few minuets to get our bag and laptop, and leave for the pharmacy (and hope that they had in fact called the doctor for the new prescription.)
I walked to the pharmacy, which included taking about a hundred steps (and I NEVER exaggerate) down the hill. As I have not had a lot of exercise due to the chemo side effect of fatigue, this was not as easy as it sounds. Needless to say, even though it was all downhill, it still worked muscles I haven't worked in a long time. I waited about 15 minutes for the prescription (which was ready), called for a car to the airport, and made it there in time. Roni had arrived there just a few minutes before me, and as I had checked in online, I already had our boarding passes. We headed to the gate, and guess what? This new flight was delayed and it ended up leaving after when our first flight was supposed to have left. We flew to Chicago Ohare, where we were to catch a connecting flight to Omaha. And just to make life more interesting, that flight was also running late, and we left Omaha over an hour later than we were supposed to. We arrived at the hotel about 11:30 PM tired but glad to finally be there.
In the morning, we had a quick breakfast with Roni's cousin whom she hadn't seen for years, and I had never met. We had a good time catching up and talking about life.
At about 10:15 AM, we checked out of the hotel and walked over to see Dr. Loggie. Unfortunately, he was seeing another patient, so we didn't get to see him until about 12 noon. The bad thing about this is that our flight was scheduled to leave at 1:30 PM, which meant we were a little rushed in our consultation
Holly, Dr. Loggie's PA, took my vitals, which were pretty good. Blood pressure was good. Weight was fine. Temp was normal. Heck, if it wasn't for the cancer, I'd be in pretty good shape.
I was then asked to put on a gown and wait for the doctor.
Dr. Loggie came in and did a quick examination, which included the always fun anal examination. Kind of reminded me of the time I was abducted by aliens. :-)
We told him what Dr. Esquivel told us (that he didn't really know what was going on with me, and besides not recommending surgery, didn't have much else to recommend). He then asked if we had seen the scans, and since we hadn't, brought us into another room so he could explain what he saw.
The good news is that he did not recommend surgery either. The bad news is that he too said he did not understand what was going on with me. He said that according to the scans, he did not see anything of great concern, but was curious as to why the tumor markers were rising, even if they were not rising dramatically.
One thing he did mention is that with my original pathology report, which included signet ring cells, he was still amazed that I was still alive (something that Dr. Esquivel also mentioned) and looking as well as I do. While this was comforting, the fact that no one could tell us why the tumor markers were rising was still a little disconcerting.
His recommendation for now was to wait a couple of months, get another CT scan, another set of tumor markers and come see him again to see if anything changes and then go from there.
As we were in a hurry to catch a flight home, one of the ladies that work in the cancer center gave us a ride to the airport. When we went to check in, we were told we were too late, but were given a boarding pass and told to race to the gate in the hope they were let us on.
We went through security, and Roni raced to the gate to let them know I would be there soon. Of course "easy" wasn't on the menu. Security took our bag, went through it and took out all of our 3 oz containers because they weren't all in a separate bag. They did this a couple of times, to make sure they got everything. While this was not a problem leaving NY, I guess TSA in smaller airports like Omaha have more time on their hands. Needless to say, we missed our flight.
Fortunately Roni had already got us seats on another flight that was supposed to leave about 3 PM. That gave us time to get some lunch and relax.
We were supposed to fly from Omaha to Chicago, then from there to Washington DC, and from there to JFK. Because we missed our first flight, we also missed our connecting flight out of Chicago. This turned out to our advantage because we were able to get on standy on a flight directly to La Guardia (instead of flying to DC, then to JFK). We thought this was great because we would get home sooner. As luck would have it, this flight was also late, and because La Guardia was experiencing bad weather, flights arriving there were being delayed, which meant we left Chicago about an hour and half later than we were scheduled to leave.
We finally landed in La Guardia, caught a cab and got home about 9:30 PM. After all the traveling travails we have had in the past week or so, we were glad to be home and looking forward to not having to fly again for at least a couple of months.
So for now, concerning the cancer, we are no closer to determining a plan of action for this recurrence, but we feel comfortable that we have good, qualified people on our side who are working with us to keep me alive and give me a good quality of life. And for now, we just keep living, and enjoy life the best we are able.
One of the hard parts is trying to plan for the future. My disability runs out in a week or so, which means that my severance (from being laid off from work) will soon kick in. Does that mean that I start looking for a job? Plan for more chemo or some other treatment? How will any treatment effect my looking for a job, or if I got a job, would it be put in jeopardy because of my cancer? These are questions we have no answer for.
One thing we do know from experience is that G-d has been with us through all of this. We don't know what the future holds, but we do know that G-d has led us through many hard times before, and all we can do is trust in Him that He will continue to guide us through this current battle.
Of course because of all the walking I did on Tuesday, my legs are aching. Fortunately it is an ache from not exercising and not from anything that should cause concern. I am also starting to get some energy back, so slowly but surely I hope to get back into shape and get ready for whatever comes next. Spring is also coming and it is warming up here in NYC, so I am able to get out more and get some fresh air. It's still not as warm as Jamaica was, but it's better than the frigid cold we had during the winter. I'm looking forward to getting out more, getting some exercise and getting back to living. And until we know more, that's what I'll do.
I would also like to thank everyone for your prayers, well wishes and good thoughts. Your love and concern are felt deeply by Roni and me and we cherish all of you. We'll keep you updated as we learn more.
Kevin
Sunday, March 29, 2009
How I'm Doing
Just a quick update to let you know how I am doing physically.
The side effects of the chemo are still lingering. The cold is still causing neuropathy in my hands and feet. I am able to drink cold drinks, but can't hold the cold glass for very long before my fingers start to hurt. While it is slowly getting better, it is still very annoying. Being back in NYC, I feel it especially at night. I'll wake up and the neuropathy will be bothering me. So I go back and forth from being hot and taking the blankets off, to being cold and pulling the covers back over me.
The fatigue is also still bothering me. A couple of weeks ago I went to see my oncologist and had to be given a shot of Neuprogen to bring my blood levels back up (white and red blood cells were low). Hopefully this too will pass and I'll start to get some energy back.
The last side effect that keeps bothering me is a metallic taste on my tongue that has lingered for awhile now. Fortunately, it does not keep me from being able to taste food, it's just in between eating or drinking that is when it is annoying.
As for doctor visits, this Tuesday, we will be heading to Omaha, NE. Wednesday morning we will be meeting with Dr. Loggie, a surgeon and specialist in PMP to see what he might suggest for our next steps. I'm not looking forward to more traveling, but hopefully we'll get some good news.
I was also scheduled to get a second opinion from another medical oncologist, but I have to get more of my medical records to her, so that meeting is postponed until April 13th.
Well, that's it for now. I'll post again after we meeting with the surgeon.
The side effects of the chemo are still lingering. The cold is still causing neuropathy in my hands and feet. I am able to drink cold drinks, but can't hold the cold glass for very long before my fingers start to hurt. While it is slowly getting better, it is still very annoying. Being back in NYC, I feel it especially at night. I'll wake up and the neuropathy will be bothering me. So I go back and forth from being hot and taking the blankets off, to being cold and pulling the covers back over me.
The fatigue is also still bothering me. A couple of weeks ago I went to see my oncologist and had to be given a shot of Neuprogen to bring my blood levels back up (white and red blood cells were low). Hopefully this too will pass and I'll start to get some energy back.
The last side effect that keeps bothering me is a metallic taste on my tongue that has lingered for awhile now. Fortunately, it does not keep me from being able to taste food, it's just in between eating or drinking that is when it is annoying.
As for doctor visits, this Tuesday, we will be heading to Omaha, NE. Wednesday morning we will be meeting with Dr. Loggie, a surgeon and specialist in PMP to see what he might suggest for our next steps. I'm not looking forward to more traveling, but hopefully we'll get some good news.
I was also scheduled to get a second opinion from another medical oncologist, but I have to get more of my medical records to her, so that meeting is postponed until April 13th.
Well, that's it for now. I'll post again after we meeting with the surgeon.
Vacation
As I mentioned in my last post, Roni and I headed to Montego Bay, Jamaica for a vacation. We needed some time to just relax and not think about cancer. Plus, I was able to go outside, something I haven't been able to do while it is cold here in NYC. The temperature in Jamaica was between 70 and 80f, and even though the neuropathy in my hands and feet bothered me a little, the weather allowed me to be outside, even in the evening.
The resort was OK. Nothing to write home about, but we got a good price, so it was worth it, especially as it was an all-inclusive. Besides, the view from our room was pretty good, and we were able to watch the sunset over the ocean every evening.
Usually while on vacation, we try to do something adventurous. In the past we have walked through the old city of Fez, Morocco, walked on a glacier in Alaska, went snorkeling in the Bahamas, etc. But this time, we just stayed on the resort. I am still fighting fatique from the chemo, so we decided that this vacation was for relaxing. We did go out of the resort once and within 5 minutes were accosted by two people to come to their souvenior stores. That was enough for me to keep me from leaving the resort. I just wasn't up for dealing with people pretending to be friendly, but only wanting my money.
The only problem we had was when we were on the plane to come home on Thursday. As they were towing the plane back from the gate, something happened to the towbar and we think damaged the nose wheel gear. We sat on the plane for about an hour before they decided that it wouldn't be safe to fly, so we went back to the gate and got off. After about an hour or so, American Airlines told us they were sending a part to Jamaica to fix the plane, and in the meantime, they would be putting us up in a hotel for the evening. So, more waiting while we stood in line for our hotel vouchers. Once we got those, then got on a bus, it was about 7 PM when we got to the hotel, Rosehall Resort and Spa (a Hilton hotel). When you realize we left our resort at 12:30 PM and our flight was support to depart about 3 PM, it was turning out to be a long day.
They told us that our flight was going to leave at 6 AM, so we had to be ready to leave for the airport at 3:30 AM, or we used to call it in the Air Force, Oh-Dark-Thirty.
The voucher they gave us was good for food and drink, so we had a great meal before heading to our room. I took a hot shower, and laid down to sleep about 9:30. I haven't been sleeping well, so I usually take an Ambian to help me sleep. Well, as we had to be up at 3, I did not take an Ambian, and probably got a total of 30 mins or so of sleep.
3 AM, our alarm went off, we packed up and left for the airport about 3:40. Because we had to go through customs and immigration when we left the airport on Thursday, we had to go through all that again to go back to our flight. Our flight was scheduled to leave at 6AM, but we didn't start boarding till about 5:40. We finally took off about 7 AM. The flight took over 3 hours. After getting our luggage, catching a cab (getting stuck in traffic), etc. we finally got home about 12 noon. So as you can imagine, it was a long ordeal getting home, but we made it back safe and sound.
But even with all of that, the trip was worth it. The warm weather was great and I enjoyed being able to be outside. Hopefully it will start warming up around here so I can get outside my apartment more as well.
The resort was OK. Nothing to write home about, but we got a good price, so it was worth it, especially as it was an all-inclusive. Besides, the view from our room was pretty good, and we were able to watch the sunset over the ocean every evening.
Usually while on vacation, we try to do something adventurous. In the past we have walked through the old city of Fez, Morocco, walked on a glacier in Alaska, went snorkeling in the Bahamas, etc. But this time, we just stayed on the resort. I am still fighting fatique from the chemo, so we decided that this vacation was for relaxing. We did go out of the resort once and within 5 minutes were accosted by two people to come to their souvenior stores. That was enough for me to keep me from leaving the resort. I just wasn't up for dealing with people pretending to be friendly, but only wanting my money.
The only problem we had was when we were on the plane to come home on Thursday. As they were towing the plane back from the gate, something happened to the towbar and we think damaged the nose wheel gear. We sat on the plane for about an hour before they decided that it wouldn't be safe to fly, so we went back to the gate and got off. After about an hour or so, American Airlines told us they were sending a part to Jamaica to fix the plane, and in the meantime, they would be putting us up in a hotel for the evening. So, more waiting while we stood in line for our hotel vouchers. Once we got those, then got on a bus, it was about 7 PM when we got to the hotel, Rosehall Resort and Spa (a Hilton hotel). When you realize we left our resort at 12:30 PM and our flight was support to depart about 3 PM, it was turning out to be a long day.
They told us that our flight was going to leave at 6 AM, so we had to be ready to leave for the airport at 3:30 AM, or we used to call it in the Air Force, Oh-Dark-Thirty.
The voucher they gave us was good for food and drink, so we had a great meal before heading to our room. I took a hot shower, and laid down to sleep about 9:30. I haven't been sleeping well, so I usually take an Ambian to help me sleep. Well, as we had to be up at 3, I did not take an Ambian, and probably got a total of 30 mins or so of sleep.
3 AM, our alarm went off, we packed up and left for the airport about 3:40. Because we had to go through customs and immigration when we left the airport on Thursday, we had to go through all that again to go back to our flight. Our flight was scheduled to leave at 6AM, but we didn't start boarding till about 5:40. We finally took off about 7 AM. The flight took over 3 hours. After getting our luggage, catching a cab (getting stuck in traffic), etc. we finally got home about 12 noon. So as you can imagine, it was a long ordeal getting home, but we made it back safe and sound.
But even with all of that, the trip was worth it. The warm weather was great and I enjoyed being able to be outside. Hopefully it will start warming up around here so I can get outside my apartment more as well.
Friday, March 20, 2009
The Fun Continues...
And by "Fun", I mean "not fun".
I talked to my oncologist today to get the results of my tumor markers taken on Tuesday. It seems that after I finished chemo, my markers started to go up again. My CEA went from around 16.9 (taken after my 5th round) to 19 (a couple of weeks after my final round). Not very good news at all.
Our next step is to meet with another PMP specialist in Omaha, NE. We had met with Dr. Loggie before, but decided to go with a surgeon a bit closer. But since the doctor that was closer did not give us very many options, we have decided to go back to the one in Omaha. We will be meeting with Dr. Loggie on April 1st (yes, April Fools Day) at 10:30 AM to see what he might suggest. We found him to be very hopeful last time, and hope he will have some good news for us this time as well.
The Monday before we go to Omaha, we will also be meeting with another medical oncologist here in New York City. While I find my oncologist to be very capable, we are just trying to cover all of our bases with second opinions.
And so we keep seeking answers and we continue to appreciate your prayers.
Kevin
PS - Because we also need to relax, Roni and I will be heading to Jamaica tomorrow (Mar 21) for a few days of warmth and nothing to do except lay on the beach. We are looking forward to taking a break from thinking about cancer for awhile.
I talked to my oncologist today to get the results of my tumor markers taken on Tuesday. It seems that after I finished chemo, my markers started to go up again. My CEA went from around 16.9 (taken after my 5th round) to 19 (a couple of weeks after my final round). Not very good news at all.
Our next step is to meet with another PMP specialist in Omaha, NE. We had met with Dr. Loggie before, but decided to go with a surgeon a bit closer. But since the doctor that was closer did not give us very many options, we have decided to go back to the one in Omaha. We will be meeting with Dr. Loggie on April 1st (yes, April Fools Day) at 10:30 AM to see what he might suggest. We found him to be very hopeful last time, and hope he will have some good news for us this time as well.
The Monday before we go to Omaha, we will also be meeting with another medical oncologist here in New York City. While I find my oncologist to be very capable, we are just trying to cover all of our bases with second opinions.
And so we keep seeking answers and we continue to appreciate your prayers.
Kevin
PS - Because we also need to relax, Roni and I will be heading to Jamaica tomorrow (Mar 21) for a few days of warmth and nothing to do except lay on the beach. We are looking forward to taking a break from thinking about cancer for awhile.
Tuesday, March 17, 2009
Faith and Hope
Roni here.
Talking to the doctor yesterday was deflating, to say the least. But with help from wise words from our rabbi, encouraging words from friends, and perspective that comes with prayer, I am feeling hopeful and remembering that doctors can only give us their best guesses and, as scientists, don't factor in divine intervention. And I have learned through this journey that that is a very incomplete way to look at things.
We remind ourselves that thus far, we have heard just one doctor's opinion, and we have already contacted a surgeon in NE who, when we consulted him last winter, seemed to think that when the time was right he could perform a preemptive, curative surgery. So, we are in the process of lining up a second opnion consult with him.
We've been remembering how when Kevin was first diagnosed 5 years ago G-d led us, through a series of coincidences that are better explained as "divine intervention," away from the doctors who did not have hope for him to the one who was willing to take Kevin's case. And how even that doctor was amazed at the outcome calling Kevin "miracle man." When the oncologist reviewed Kevin's chart with us prior to Kevin's discharge afer the MOAS*, he looked up after reading the medical history and sequence of events, looked us both in the eyes and said, "I hope you believe in G-d." We did and do! We know that it's doctors' jobs to approach things as scientists dealing with odds and probable outcomes, but Kevin has already beat odds of 95% against. So, we will continue to seek the right doctor(s) while putting our trust in G-d.
And as always, we are grateful for all prayers and words of support. We are blessed to have so many caring people in our lives.
*Mother of all surgeries
Talking to the doctor yesterday was deflating, to say the least. But with help from wise words from our rabbi, encouraging words from friends, and perspective that comes with prayer, I am feeling hopeful and remembering that doctors can only give us their best guesses and, as scientists, don't factor in divine intervention. And I have learned through this journey that that is a very incomplete way to look at things.
We remind ourselves that thus far, we have heard just one doctor's opinion, and we have already contacted a surgeon in NE who, when we consulted him last winter, seemed to think that when the time was right he could perform a preemptive, curative surgery. So, we are in the process of lining up a second opnion consult with him.
We've been remembering how when Kevin was first diagnosed 5 years ago G-d led us, through a series of coincidences that are better explained as "divine intervention," away from the doctors who did not have hope for him to the one who was willing to take Kevin's case. And how even that doctor was amazed at the outcome calling Kevin "miracle man." When the oncologist reviewed Kevin's chart with us prior to Kevin's discharge afer the MOAS*, he looked up after reading the medical history and sequence of events, looked us both in the eyes and said, "I hope you believe in G-d." We did and do! We know that it's doctors' jobs to approach things as scientists dealing with odds and probable outcomes, but Kevin has already beat odds of 95% against. So, we will continue to seek the right doctor(s) while putting our trust in G-d.
And as always, we are grateful for all prayers and words of support. We are blessed to have so many caring people in our lives.
*Mother of all surgeries
Monday, March 16, 2009
PET Scan Update
Well, we finally heard back from Dr. Esquivel this afternoon. As many other times in this journey, we did not get the news we were hoping for. Basically, Dr. Esquivel said besides doing more chemo, there is not much else to do. To us, it sounded like, "just wait for the inevitable to happen." He does not believe that a surgery would be curative, as he does not believe he would be able to get everything. And, he confirmed what we have always been told, chemo will not kill this cancer, just keep it at bay for awhile.
So, according to his recommendation, it is either more chemo, or nothing.
Not being satisfied with either of those choices, we are in the process of getting some more opinions. One thing we have become a strong advocate for.
We will be contacting Dr. Loggie, a specialist in Omaha, NE that we met with before, and who at one point thought surgery would be helpful, but just not necessary when we met with him (which was in Dec 07). So we will meet with him again to see if his opinion has changed.
I have also made an appointment (March 30th) to see another medical oncologist who has experience with this disease. While my oncologist has been treating me for over 5 years, he still relies often on the opinion of the surgeons that we meet with, so it would be good to see what another oncologist would have to say about my situation.
And there you have it. Another bump on this road that we have been diverted on to. Is it scary? Heck ya. Being told that there is really nothing that can be done is frightening. Your mind starts racing towards the worst possible outcome, even though in reality, none of us know what the future holds.
Maybe it's not knowing what the future holds that is scary. Maybe it's that we have no control of what the future holds that is scary. Maybe it's that the future has a possibility of creeping up on us faster than we want.
Maybe it's a little bit of all three.
I'll post again when we get more information.
Thursday, February 19, 2009
5 Years Post Op
Yesterday (Feb 18th) was the 5th anniversary of my MOAS (Mother Of All Surgeries), which was done in Washington DC. So, 5 years ago today, I was probably getting out of ICU and being moved to my private room, where I would spend the next 16 days.
Since then, I have had some ups and downs. Roni and I have had opportunities to travel to some great places (Israel, Florida, Arizona, Bahamas). We have spent time with friends and family. We've eaten some great food and have enjoyed life.
On the down side, we have gone through the battle of cancer recurrence. We have met with cancer specialists, spent time in doctors offices, and chemo rooms.
It's been one heck of a ride, and one that we were hoping not to have to go through again, but, here we are.
We are thankful that G-d has been with us, and seen us through some rough times. He has given us the courage and strength we needed, when we needed it. We are thankful for friends and family that have stood with us during this time, and can never do enough to show our appreciation for the love that has been shown to us, and the prayers that have been offered up for us.
So, 5 years since my major cancer surgery, and 5 years, 4 months since I was diagnosed and I'm still here. In 5 years, I hope to post again about the adventures, trials, good times and bad times that we have gone through.
Kevin
Since then, I have had some ups and downs. Roni and I have had opportunities to travel to some great places (Israel, Florida, Arizona, Bahamas). We have spent time with friends and family. We've eaten some great food and have enjoyed life.
On the down side, we have gone through the battle of cancer recurrence. We have met with cancer specialists, spent time in doctors offices, and chemo rooms.
It's been one heck of a ride, and one that we were hoping not to have to go through again, but, here we are.
We are thankful that G-d has been with us, and seen us through some rough times. He has given us the courage and strength we needed, when we needed it. We are thankful for friends and family that have stood with us during this time, and can never do enough to show our appreciation for the love that has been shown to us, and the prayers that have been offered up for us.
So, 5 years since my major cancer surgery, and 5 years, 4 months since I was diagnosed and I'm still here. In 5 years, I hope to post again about the adventures, trials, good times and bad times that we have gone through.
Kevin
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