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.
Sunday, March 29, 2009
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.
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