Well, the week didn't exactly go like I planned, and I felt no closer to decisions on Friday than I had on Monday - very depressing. But Brant is awesome and he reminds me to keep a check on my expectations and to remember that we have control of this situation by having great faith that it will work out how it is meant to be. We are able to make some of our own decisions, and we are not at the total mercy of this process. Before long I know I will actually be fighting this disease with some great cocktail of chemicals. Until then, I am fighting it with my thoughts and attitude and with the many prayers that are being offered up.
We had a fun weekend with a visit to City Park on Saturday. it was in the upper 50's and gorgeous. We weren't the only ones with this idea. I will attempt to post some pictures:
Sunday, January 28, 2007
Wednesday, January 24, 2007
Waiting Game
Not much new to report. We are just waiting on the insurance process. As expected, they denied the initial request, but it is too early to know if the rejection is due to lack of sufficient details or if it just really isn't going to happen. Sloan Kettering has been very quick with things, and I don't think they will leave me hanging. They realize some treatment is better than no treatment, and I really should be getting started soon. We hope to make decisions by early next week and then start treatments around Feb. 5th whether it is here or in NY.
Last weekend Katie took my picture and I was able to upload it to the blog (wish it was a wee bit smaller!). I tried to fill out some info about myself but that was embarrassing, so my "complete profile" is still pretty empty. I guess I have a vague self-identity!
Last weekend Katie took my picture and I was able to upload it to the blog (wish it was a wee bit smaller!). I tried to fill out some info about myself but that was embarrassing, so my "complete profile" is still pretty empty. I guess I have a vague self-identity!
Friday, January 19, 2007
Back from NYC
It was a quick trip and we spent much of it waiting in airports - 1.5hr delay up and 2.5 hr delay on the return - ugh! But it was worth it and we learned a lot. The visit with Dr. Moskowitz was very sobering and he explained many details about my case. He did not agree with the 60% cure rate number I was told by the local Doc regarding the outcome of stem cell transplant for the treatment of Hodgkins Relapse. Instead, he said it is about 50%. There have been lots of studies lately trying to determine which patients do better with ASCT treatment - this work is trying to develop a prognostic model. In his studies, Dr. M is seeing that people with 0-1 risk factors are 70-80% survival, and people with 2+ risk factors are more like 20 - 30%. The average of these two groups is where the 50% number comes from. Since I am in the second group, he feels strongly that I should not undergo the "standard" treatment and instead get a more aggressive regimen.
The clinical trial he has underway would basically give me a double dose of the same chemo I would get down here and then harvest my stem cells. If I wasn't "clean" at that point, I would go thru a new round of chemo with different drugs to try to achieve remission before the stem cell transplant. The transplant process would be similar to down here, but done in the hospital. Dr. M also made a case for getting treatment at a location that specializes in Hodgkins research and has lots of experience with the disease. Since HD is not very common, and those of us who relapse are even rarer (since most are cured with first round....), not everyone has expertise in the field. My local doctors are certainly well versed in Hodgkins, but nowhere near the same level as the lymphoma group at MSKCC who are constantly learing new things in this field.
So after that wonderfully heavy news, Brant and I had a great little lunch at an Italian place and discussed whether we could manage treatment in NYC. It will be a real strain on the family having to be apart, and not a lot of fun financially, either. But it just seems like everything has fallen into place for us to be at MSKCC and so we are going to try to get it approved thru insurance.
We hailed a cab for the ride back to La Guardia. I should have known there would be trouble when Brant had barely pulled his hand out of his pocket and a cab came flying across four lanes of traffic, cutting in front of two other cabs, to get to us first. I truly thought the whole issue of cancer treatment would not be an issue since I expected to die in that car. What a wild ride - Disney should consider it at their theme parks! I did want to experience a little of NY, so I guess the cab ride was it. Thre wasn't time to do much else other than walk the few blocks around the hospital center. It was cold and drizzly, but we really enjoyed walking around. It is amazing that you can have everything you need in just a few blocks!! I found the whole "urban environment" to be fascinating. So many people living is such a small space.
Thank you for all of your continued prayers. Please pray that Brant and I will be able to make wise decisions and that things will work out in our favor to have the right treatments.
The clinical trial he has underway would basically give me a double dose of the same chemo I would get down here and then harvest my stem cells. If I wasn't "clean" at that point, I would go thru a new round of chemo with different drugs to try to achieve remission before the stem cell transplant. The transplant process would be similar to down here, but done in the hospital. Dr. M also made a case for getting treatment at a location that specializes in Hodgkins research and has lots of experience with the disease. Since HD is not very common, and those of us who relapse are even rarer (since most are cured with first round....), not everyone has expertise in the field. My local doctors are certainly well versed in Hodgkins, but nowhere near the same level as the lymphoma group at MSKCC who are constantly learing new things in this field.
So after that wonderfully heavy news, Brant and I had a great little lunch at an Italian place and discussed whether we could manage treatment in NYC. It will be a real strain on the family having to be apart, and not a lot of fun financially, either. But it just seems like everything has fallen into place for us to be at MSKCC and so we are going to try to get it approved thru insurance.
We hailed a cab for the ride back to La Guardia. I should have known there would be trouble when Brant had barely pulled his hand out of his pocket and a cab came flying across four lanes of traffic, cutting in front of two other cabs, to get to us first. I truly thought the whole issue of cancer treatment would not be an issue since I expected to die in that car. What a wild ride - Disney should consider it at their theme parks! I did want to experience a little of NY, so I guess the cab ride was it. Thre wasn't time to do much else other than walk the few blocks around the hospital center. It was cold and drizzly, but we really enjoyed walking around. It is amazing that you can have everything you need in just a few blocks!! I found the whole "urban environment" to be fascinating. So many people living is such a small space.
Thank you for all of your continued prayers. Please pray that Brant and I will be able to make wise decisions and that things will work out in our favor to have the right treatments.
Thursday, January 11, 2007
Met the local doctor.....
....that will do my stem cell transplant if I do it locally. I feel really good about the procedure and the odds he is giving - about 60% of first relapse patients can achieve cure with an autologous stem cell transplant. It is neat that he said right up front that the protocol he follows was developed by Dr. Moscowitz at Sloan Kettering. That is who I am going to see next week!!
This treatment process will take a few months if all goes well. The actual transplant process is almost done completely on an outpatient basis these days. It blows my mind that they will wipe out all of my bone marrow and with it my total immune system, then send me home to my house - does he know how poorly I clean!!?? And that we have two little germ carriers??!! Actually, it sounds pretty nice to be able to rest at home so long as there is no sign of fever. There are actually worse bugs at the hospital, and they see you daily for antiobiotic injections and blood counts. The actual transplant process will take about 3 weeks, but I will do a couple of chemo cycles before I get to the transplant step.
So we are all set to head up to Sloan Kettering next Wed/Thurs to meet with Dr. Moscowitz. I am so thankful to be able to get his opinion on my case and see if there is some reason I should follow a different protocol than the one proposed down here in Virginia. He claims there has been much learned in the last 13 years about Hodgkins, and he has a clinical trial ongoing. Plus, it will be great for Brant and I to have a quick trip up to New York. I am looking forward to walking in Central Park.
This treatment process will take a few months if all goes well. The actual transplant process is almost done completely on an outpatient basis these days. It blows my mind that they will wipe out all of my bone marrow and with it my total immune system, then send me home to my house - does he know how poorly I clean!!?? And that we have two little germ carriers??!! Actually, it sounds pretty nice to be able to rest at home so long as there is no sign of fever. There are actually worse bugs at the hospital, and they see you daily for antiobiotic injections and blood counts. The actual transplant process will take about 3 weeks, but I will do a couple of chemo cycles before I get to the transplant step.
So we are all set to head up to Sloan Kettering next Wed/Thurs to meet with Dr. Moscowitz. I am so thankful to be able to get his opinion on my case and see if there is some reason I should follow a different protocol than the one proposed down here in Virginia. He claims there has been much learned in the last 13 years about Hodgkins, and he has a clinical trial ongoing. Plus, it will be great for Brant and I to have a quick trip up to New York. I am looking forward to walking in Central Park.
Wednesday, January 10, 2007
Getting Started
OK...so I am setting up this blog spot but I am sooooo not techie enough to be here. My brothers are both probably laughing hysterically over in Australia. I don't even text message..... But this was on my New Years Resolution list as a way to journal my experience and make an easy (?) way to keep in touch with folks. We'll see. As you can tell from my main page, I still have a little work to do on the site. Hopefully I will get a picture and some info about myself there before long.
But first a little boring medical history and getting up to date. I was diagnosed with Hodgkins, nodular sclerosing, stage IIe in June of 2005. It was mostly in my mediastinal area with some damage to my sternum bone - it was that pain that led to my diagnosis and not the usual "a lump appeared on my neck". I did ABVD, 4 cycles, from July to Oct '05, and then radiation in Nov and Dec '05. I was declared clean in Jan'06. It was supposed to be your garden variety Hodgkins case "if you are going to get cancer....this is the GOOD kind to have". I was supposed to be done with it, right? I had normal CAT scans in Apr '06, a tiny spot on my Jul '06 CAT scan, and then a "hot" PET scan in Dec '06. A biopsy of tissue in my right lung confirmed a relapse of Hodgkins. This time it is still in my chest area, but now with some disease in my right lung as well.
OK, so now we are planning treatments. I have an appointment tomorrow with the stem cell transplant doctor to go over the proposed treatment that I would get here locally. Then we are planning a trip to New York next Thursday to speak with a Hodgkins expert - Dr. Moscowitz at Sloan Kettering - about my case. I am pretty excited I got in to see him. He actually researched and wrote the protocol that I will receive down here. And he is working on clinical trials that are trying to "optimize" chemo based on risk factors of a first relapse Hodgkins case (like me!). After that it will be time to decide where and how we treat this beast.
I am feeling quite well for a person walking around with cancer...... the kids and work keep us busy, so there isn't too much time to dwell on this. For now, it is kinda of like a project - research, plan, execute....however, I am sure it will get much more real soon enough. But for now.... "Therefore, do not worry about tomorrow, for tomorrow will worry about itself" Mt. 6:34 "Who of you by worrying can add a single hour to his life?" Mt. 6:27
But first a little boring medical history and getting up to date. I was diagnosed with Hodgkins, nodular sclerosing, stage IIe in June of 2005. It was mostly in my mediastinal area with some damage to my sternum bone - it was that pain that led to my diagnosis and not the usual "a lump appeared on my neck". I did ABVD, 4 cycles, from July to Oct '05, and then radiation in Nov and Dec '05. I was declared clean in Jan'06. It was supposed to be your garden variety Hodgkins case "if you are going to get cancer....this is the GOOD kind to have". I was supposed to be done with it, right? I had normal CAT scans in Apr '06, a tiny spot on my Jul '06 CAT scan, and then a "hot" PET scan in Dec '06. A biopsy of tissue in my right lung confirmed a relapse of Hodgkins. This time it is still in my chest area, but now with some disease in my right lung as well.
OK, so now we are planning treatments. I have an appointment tomorrow with the stem cell transplant doctor to go over the proposed treatment that I would get here locally. Then we are planning a trip to New York next Thursday to speak with a Hodgkins expert - Dr. Moscowitz at Sloan Kettering - about my case. I am pretty excited I got in to see him. He actually researched and wrote the protocol that I will receive down here. And he is working on clinical trials that are trying to "optimize" chemo based on risk factors of a first relapse Hodgkins case (like me!). After that it will be time to decide where and how we treat this beast.
I am feeling quite well for a person walking around with cancer...... the kids and work keep us busy, so there isn't too much time to dwell on this. For now, it is kinda of like a project - research, plan, execute....however, I am sure it will get much more real soon enough. But for now.... "Therefore, do not worry about tomorrow, for tomorrow will worry about itself" Mt. 6:34 "Who of you by worrying can add a single hour to his life?" Mt. 6:27
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