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...
Saturday, April 04, 2009
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
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