The mind the mind, the most powerful organ. How to harness this power, I could sure use more help there. The anticipation of things such as chemo treatment is so strong you can be physically sick even without the chemicals. Now, as I have mentioned in this blog previously, every trip is new adventure and this time is no exception. I was not sick before hand but was sick immediately after chemo but really before its effects were fully felt by my body. Go figure. Anyway the mind is no joking matter. It would sure be wonderful to harness that power more effectively. Now, day 2 after treatment, I can feel the iron weight being lifted from my psyche (thanks to minds wonderful ability to quickly diminish whatever is awful that we endure). I can actually feel a lighter sense slowly seeping back into my soul. IT IS OVER (at least this part of the journey).
My last CT scan was after treatment number 3 and it showed that I was in a complete response according to the doctors. What does that mean you may wonder? That is a good question. This game, like so many others is partly one of semantics, one with a new language that you have to learn before you can understand what the heck they are talking about. So important terms are "complete remission", which means that the tumors have shrunk to the point that CT or Pet scans cannot see them anymore or that they are so small that they are indistinguishable from normal lymph nodes. This is where I am today. It is a good place to be that is for sure. What it is not is a "cure", which essentially is not a part of the language of cancer. The technology for detection is not perfect and the scans that are used to gauge success can only see growths that have millions of cells in them. So the bottom line is that I sit in the netherworld between complete remission and cure.
This is why the trajectory of therapy now heads toward what is called "PBSCT" (peripheral blood stem cell transplant). In the old days this was called a bone marrow transplant, but has evolved and today bone marrow is not used. On October 15th I have an appt with the transplant team at Stanford to see if I will qualify for this additional therapy. I will learn more of the details at that time of what the procedure involves in 2008.
This past weekend I attended the Lymphoma Research Foundation annual North American Educational Forum for patients that was in San Francisco. This was very worthwhile. There were doctors from across the country that presented the latest in research and treatment options. The conference is only for lymphoma so it is more targeted toward my situation. There are 74000 new cases each year in the US and the rate is increasing. There were statistics shown for the world and the US numbers are much greater than any other region. The rate of lymphoma per 100000 population is > 5 in the US. The highest outside the US is somewhere nearer to 1. This certainly gives you pause to wonder why? What the heck are we doing that is harming us so much more? There is a big effort to try to figure out why, but basically researches don't know. Theories range from the environment to pesticides.
My disease gives new meaning to the term rare. Of the 70K+ new cases, ~ 90% are B cell varieties and the remaining ~ 10% are T cell varieties (what I have). Within that 10% ALCL (specifically what I have) accounts for ~ 3%. Within that 3% ALK- (specifically what I have) is even a much smaller percentage. So what this all means is that there may be a few hundred per year in the US. All this leads to the inevitable conclusion that this sucker is rare and understood poorly. I can report that the doctors that see this the most and work with it the most agree.
At this weekends forum there were at least 500 lymphoma patients and survivors in attendance. There were a total of 3 T cell patients. WOW.
I did learn also that it is the expert "opinion" of these doctors that the transplant is probably a good idea.
Enough about me and my condition, I am looking forward to the next month or so of my body having time to heal and feeling normal again and going back to the gym.
Do you know where your money is today? Are you better off today than you were 4 years ago? 8 years ago? What a mess!!!
There was an interesting article about the history of previous bailouts in the US. I am going to try to attach that to the blog, wish me luck. I have not figured out how to do it yet. The article goes back to Alexander Hamilton and his interventions in the late 1700's. The point is that there is a long tradition of public funds being used for bailouts. One has to wonder if this is such a good idea. But then there is the possibly worse impact if it is not done.
Another observation I would like to make is Doonesbury. My favorite comic strip of political comment. If you don't read it, take a look. Amazing that after so many years he can be so razor sharp. I want to post one strip if I can figure out how. I used to read the comics but stopped for many years and have only started again this year. This strip is like a recognizable link to my past that is timely today. How refreshing.
To all that are offering their support and friendship and prayers to Carol and I during this journey I want to express my continuing gratitude. It means a great deal to me and in my more emotional moments it makes me cry with appreciation and thankfulness at having such support. Please feel free to leave comments.
Rich
Wednesday, October 1, 2008
Tuesday, September 9, 2008
Still Alive After Five
"Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind
I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah"
Breaking out in a little bit of song after chemo day 5 on Monday. "Bold talk for a one eyed fat man" (actually skinny with glasses)? Stay tuned for the next few years, we'll see.
As you can tell I feel surprising well on T+1. Hope it continues. It is really true that each time is different and unpredictable. I could feel my blood pressure rising as the time approached and it was in fact true. At the doctors visit BP was 110 at the infusion room it went up to 120, still low but my BP has been running low (100 - 110) for a long while.
So the future looks like this: Hopefully only one more treatment, on 9/29. Then a follow up Pet/CT scan to verify my official status. Assuming all is as well as we think then no more treatments. Then on to ASCT (autologous stem cell transplant). Kaiser is in the process of reviewing this for approval. Will be performed at Stanford. More details later, as they become available.
In November we are going to go lay on the beach in Maui for 11 days, Yeah. I am more than looking forward to this. Some semblance of normalcy at last.
I have found that my eyes have been affected by the chemo (prednisone). Hopefully this will be temporary. I have been experiencing dizziness that is most pronounced during the middle of the 3 week cycle. but I have finally come to the conclusion that at least a part of this is due to eye strain that I am getting as I read. Since it is probably transient it is hard to do anything about it till the treatments are over for a while and my eyes stabilize so that I can have my vision checked and maybe a new prescription. So it is something I need to live with for the short term. Annoying, especially since reading is a good pastime during this.
This past weekend I managed to get in a great mountain bike ride at Tahoe with Jeff and his cousin John. This is the first time I have been on a bike for months. It felt good, but I was exhausted afterward. We went to visit Seneca Pond the place where the Angora fire of a year ago started. The area around the pond has all kinds of trails and is good riding. Looking at it I have no idea how they can tell this is where the fire started. They must be good detectives.
Politics continues to take center front stage. The latest page turner of VP candidate Palin has been a brilliant ploy to distract attention from the important national issues we are faced with. My hat is off once again to Karl Rove and his team of manipulators.
I continue to be amazed at how easily black is made to be white. The Republicans are effectively co opting the change message and they are paining the Democrats as tax and spend, while claiming they alone can keep America safe. It totally amazes me that the Republicans can tell you with a strait face that Palin has foreign policy experience because Alaska is the closest state to Russia and it borders Canada. A classic black being made white. It is outrageous for the Republicans to claim the fiscal responsibility high ground considering the past 8 years of fiscal irresponsibility. I begin to wonder anew if Democrats know how to win. They seem to be outclassed when it comes to mudslinging and maneuvering.
Today I had too much time on my hands and was alternately watching FOX and CNBC, polar opposites in the political spectrum. To me it is depressing. The gulf that divides these two opinions is enormous. I say opinions, because they both can't be talking about the facts or they would not be so different. It really makes me wonder if is possible to bring the country any closer together. Bringing the country closer is my hope and I tend to believe Obama is more likely to do this, if he gets the chance. I think McCain is a good and honest man. However reading about some of his advisers, it is distressing to see that they come from various factions of the neocon movement. The question is how much influence do they have?
Hopefully the debates can bring the issues that are at stake back into focus. But I wish I felt more confident with only 50 days to go.
The good news, the decision will be made soon, yeah.
Thanks to all my friends and family for their continuing support.
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind
I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah"
Breaking out in a little bit of song after chemo day 5 on Monday. "Bold talk for a one eyed fat man" (actually skinny with glasses)? Stay tuned for the next few years, we'll see.
As you can tell I feel surprising well on T+1. Hope it continues. It is really true that each time is different and unpredictable. I could feel my blood pressure rising as the time approached and it was in fact true. At the doctors visit BP was 110 at the infusion room it went up to 120, still low but my BP has been running low (100 - 110) for a long while.
So the future looks like this: Hopefully only one more treatment, on 9/29. Then a follow up Pet/CT scan to verify my official status. Assuming all is as well as we think then no more treatments. Then on to ASCT (autologous stem cell transplant). Kaiser is in the process of reviewing this for approval. Will be performed at Stanford. More details later, as they become available.
In November we are going to go lay on the beach in Maui for 11 days, Yeah. I am more than looking forward to this. Some semblance of normalcy at last.
I have found that my eyes have been affected by the chemo (prednisone). Hopefully this will be temporary. I have been experiencing dizziness that is most pronounced during the middle of the 3 week cycle. but I have finally come to the conclusion that at least a part of this is due to eye strain that I am getting as I read. Since it is probably transient it is hard to do anything about it till the treatments are over for a while and my eyes stabilize so that I can have my vision checked and maybe a new prescription. So it is something I need to live with for the short term. Annoying, especially since reading is a good pastime during this.
This past weekend I managed to get in a great mountain bike ride at Tahoe with Jeff and his cousin John. This is the first time I have been on a bike for months. It felt good, but I was exhausted afterward. We went to visit Seneca Pond the place where the Angora fire of a year ago started. The area around the pond has all kinds of trails and is good riding. Looking at it I have no idea how they can tell this is where the fire started. They must be good detectives.
Politics continues to take center front stage. The latest page turner of VP candidate Palin has been a brilliant ploy to distract attention from the important national issues we are faced with. My hat is off once again to Karl Rove and his team of manipulators.
I continue to be amazed at how easily black is made to be white. The Republicans are effectively co opting the change message and they are paining the Democrats as tax and spend, while claiming they alone can keep America safe. It totally amazes me that the Republicans can tell you with a strait face that Palin has foreign policy experience because Alaska is the closest state to Russia and it borders Canada. A classic black being made white. It is outrageous for the Republicans to claim the fiscal responsibility high ground considering the past 8 years of fiscal irresponsibility. I begin to wonder anew if Democrats know how to win. They seem to be outclassed when it comes to mudslinging and maneuvering.
Today I had too much time on my hands and was alternately watching FOX and CNBC, polar opposites in the political spectrum. To me it is depressing. The gulf that divides these two opinions is enormous. I say opinions, because they both can't be talking about the facts or they would not be so different. It really makes me wonder if is possible to bring the country any closer together. Bringing the country closer is my hope and I tend to believe Obama is more likely to do this, if he gets the chance. I think McCain is a good and honest man. However reading about some of his advisers, it is distressing to see that they come from various factions of the neocon movement. The question is how much influence do they have?
Hopefully the debates can bring the issues that are at stake back into focus. But I wish I felt more confident with only 50 days to go.
The good news, the decision will be made soon, yeah.
Thanks to all my friends and family for their continuing support.
Saturday, August 23, 2008
Round 4 Goes to Rich
Hello and best wishes to all.
Keeping perspective, that is the trick. Especially when crawling through the few days following chemo. But perspective has to be long term. This too will pass.
The docs tweaked the meds so that this round I kept my cookies down. Not that I had any cookies, or much of anything else for that matter. But I am thankful for the small victory. So much of this game is mental. After experiencing treatments you come to have expectations. Some of which are simply Pavlovian responses to the experience. For instance the odor of the chemo and memory of the infusion room are enough to trigger the memories in my mind that have negative effects. These are such powerful chemicals that they leave cumulative signatures etched in the brain even. Sometimes there is what seems like a flash that transports your body and brain to the feeling of the chemos full effect, for days after the treatment is over. Another example is you start to know and predict the milestones that you will pass. Starting to have an appetite again on day 3-4, feeling well enough to function day 4, watching my weight rebound day 5 and trouble sleeping day 4-5. Other milestones seem to be less predictable. There has been a cumulative effect of lightheadedness and disequilibrium that seems to hang on long into the good two week phase of the cycle. I have noted this affect over the past couple of cycles and was concerned. The docs gave my a brain MRI last week to make sure all was normal and the results don't show anything. So though they can't really explain it to me I believe it must be the cumulative effects of the treatments. In any event I was feeling up to my normal 1 hour walk last night which felt good. Sometimes I have to keep reminding myself to push harder, for the greater good.
The other good news of the treatment scene is that follow up CT scans were taken last week which show good results. This means that I will only have 2 more rounds of chemo. Yeah!!! Now the focus will turn to the next phases.
One phase is having a stem cell transplant. This is where they take my own stem cells from my blood, purify them and store them. Then they give my additional high doses of chemo that kills the immune system and hopefully all remaining cancer cells as well. Then they reintroduce the stem cells into my body and they reengraft into the bone marrow and from there recreate a new immune system. Sounds like science fiction doesn't it? But in fact this is probably the most important step. The chemo I am receiving now kills the cancer on more a macro level. The transplant hopefully will kill it on the molecular level. I will be scheduling a meeting with the transplant team in the next couple of weeks to discuss the details.
Since I am on a clinical trial currently there is also the protocol to consider. The protocol calls for receiving the experimental drug by itself (Avastin) for an additional six months after the chemo treatments. The doc said that I could short circuit this six months and move right into the transplant. However the advantage may be that it would allow my body to heal a bit from the current six rounds of chemo before embarking on the transplant regimen. Not sure which way to go yet. I do know I would like to take a break, however I don't want the cancer to get a break.
Lets talk about things more pleasant. The Olympics. Well when you don't feel like doing a lot of traveling and your looking for cheap entertainment it seems to me that you can't go wrong here. The games have been exciting with plenty of disappointments and triumphs and unexpected results. Volleyball is more exciting to watch than I thought, with games in the rain and the heat there has been plenty of drama. The swimming speaks for itself, really amazing. For me the most memorable was the come from behind anchor leg of Lezak in the mens 4 X 100 meter free style race, that was a truly heroic performance to gain a gold when it certainly appeared lost. His single split time was faster than the world record by a bunch. Of course Phelp's win by 0.01 sec in the butterfly was amazing also.
Certainly the gymnasts are an unbelievable group of youngsters. It is hard to comprehend the dedication and work that goes into building those bodies. Such an emotional roller coaster as they worked so hard for so many years for a few brief seconds of performance. It is amazing they can do anything when they get there.
I think that the Chinese have done a very good job. Considering where they have come from and the horrors of their history, they have a lot to be proud of. I salute their efforts. Now we know what $42 billion will get you. The overall good from these games has to be worth it. China still reminds me of the USA, with a lot of ambition and drive, but with decades to go before the people receive the freedom and liberties I am sure they desire. This further opening up should help.
Then there is politics. Did I say let's talk about something more pleasant? Well it is here whether we like it or not. This year I was given a gift of a subscription to the Wall Street Journal, just in time for Newcorp's Rupert Murdoch take over. Although I have read the Journal casually with admiration for years I have never read it regularly till now. The thing that I always enjoyed was their eclectic, off the wall articles about a variety of subjects that I didn't find in other publications. Well they still seem to have some of those and they do make the reading worthwhile. But now that I am reading it more regularly the right wing bias is making a much bigger impression, and I might add is getting pretty hard to take. Some of their editorials are down right ridiculous. Like their chastising Justice Kennedy about the Supreme Court decision on the Guantanamo Bay detainees, which allowed them a day in court. I had to write them on that one (they did not publish it). Anyway they are certainly the advocate for everything Republican and pretty consistently opposed to everything Democratic. There treatment of Nancy Pelosi is pretty harsh and unbalanced.
The big news today is Joe Biden running with Barrack. I hope it turns out well. I liked his presentations when the primary debates were going on, I though he was more straightforward and less posturing than any of the others. As a casual observer of his over the years I had previously thought his off the cuff remarks were sometimes rash and not thought through, hopefully that won't be an issue.
I am hoping for a President that can start bringing the country back together. I am sick and tired of everything being a calculated political position. The monumental problems we face cannot be addressed until the President engages the American people in the issues and makes everyone realize that all of us are going to have to part of the solutions. By far our financial situation is the most pressing issue. If we can't get a handle on the national debt we may find that in our lifetime our living standards will diminish much more significantly than they already have.
I think that the President needs to be an inspiration to Americans. Someone who can talk strait and engage the public is a rare gift. That is primarily why I think that Obama will get my vote. I have always respected John McCain, I think he is honest and diligent and I do believe he is a maverick. But I think his time has past and that it is time for a new vision with different energy.
Wonder how many people I can piss off with these comments?
Please take care and live life every day, it is precious.
Rich
Keeping perspective, that is the trick. Especially when crawling through the few days following chemo. But perspective has to be long term. This too will pass.
The docs tweaked the meds so that this round I kept my cookies down. Not that I had any cookies, or much of anything else for that matter. But I am thankful for the small victory. So much of this game is mental. After experiencing treatments you come to have expectations. Some of which are simply Pavlovian responses to the experience. For instance the odor of the chemo and memory of the infusion room are enough to trigger the memories in my mind that have negative effects. These are such powerful chemicals that they leave cumulative signatures etched in the brain even. Sometimes there is what seems like a flash that transports your body and brain to the feeling of the chemos full effect, for days after the treatment is over. Another example is you start to know and predict the milestones that you will pass. Starting to have an appetite again on day 3-4, feeling well enough to function day 4, watching my weight rebound day 5 and trouble sleeping day 4-5. Other milestones seem to be less predictable. There has been a cumulative effect of lightheadedness and disequilibrium that seems to hang on long into the good two week phase of the cycle. I have noted this affect over the past couple of cycles and was concerned. The docs gave my a brain MRI last week to make sure all was normal and the results don't show anything. So though they can't really explain it to me I believe it must be the cumulative effects of the treatments. In any event I was feeling up to my normal 1 hour walk last night which felt good. Sometimes I have to keep reminding myself to push harder, for the greater good.
The other good news of the treatment scene is that follow up CT scans were taken last week which show good results. This means that I will only have 2 more rounds of chemo. Yeah!!! Now the focus will turn to the next phases.
One phase is having a stem cell transplant. This is where they take my own stem cells from my blood, purify them and store them. Then they give my additional high doses of chemo that kills the immune system and hopefully all remaining cancer cells as well. Then they reintroduce the stem cells into my body and they reengraft into the bone marrow and from there recreate a new immune system. Sounds like science fiction doesn't it? But in fact this is probably the most important step. The chemo I am receiving now kills the cancer on more a macro level. The transplant hopefully will kill it on the molecular level. I will be scheduling a meeting with the transplant team in the next couple of weeks to discuss the details.
Since I am on a clinical trial currently there is also the protocol to consider. The protocol calls for receiving the experimental drug by itself (Avastin) for an additional six months after the chemo treatments. The doc said that I could short circuit this six months and move right into the transplant. However the advantage may be that it would allow my body to heal a bit from the current six rounds of chemo before embarking on the transplant regimen. Not sure which way to go yet. I do know I would like to take a break, however I don't want the cancer to get a break.
Lets talk about things more pleasant. The Olympics. Well when you don't feel like doing a lot of traveling and your looking for cheap entertainment it seems to me that you can't go wrong here. The games have been exciting with plenty of disappointments and triumphs and unexpected results. Volleyball is more exciting to watch than I thought, with games in the rain and the heat there has been plenty of drama. The swimming speaks for itself, really amazing. For me the most memorable was the come from behind anchor leg of Lezak in the mens 4 X 100 meter free style race, that was a truly heroic performance to gain a gold when it certainly appeared lost. His single split time was faster than the world record by a bunch. Of course Phelp's win by 0.01 sec in the butterfly was amazing also.
Certainly the gymnasts are an unbelievable group of youngsters. It is hard to comprehend the dedication and work that goes into building those bodies. Such an emotional roller coaster as they worked so hard for so many years for a few brief seconds of performance. It is amazing they can do anything when they get there.
I think that the Chinese have done a very good job. Considering where they have come from and the horrors of their history, they have a lot to be proud of. I salute their efforts. Now we know what $42 billion will get you. The overall good from these games has to be worth it. China still reminds me of the USA, with a lot of ambition and drive, but with decades to go before the people receive the freedom and liberties I am sure they desire. This further opening up should help.
Then there is politics. Did I say let's talk about something more pleasant? Well it is here whether we like it or not. This year I was given a gift of a subscription to the Wall Street Journal, just in time for Newcorp's Rupert Murdoch take over. Although I have read the Journal casually with admiration for years I have never read it regularly till now. The thing that I always enjoyed was their eclectic, off the wall articles about a variety of subjects that I didn't find in other publications. Well they still seem to have some of those and they do make the reading worthwhile. But now that I am reading it more regularly the right wing bias is making a much bigger impression, and I might add is getting pretty hard to take. Some of their editorials are down right ridiculous. Like their chastising Justice Kennedy about the Supreme Court decision on the Guantanamo Bay detainees, which allowed them a day in court. I had to write them on that one (they did not publish it). Anyway they are certainly the advocate for everything Republican and pretty consistently opposed to everything Democratic. There treatment of Nancy Pelosi is pretty harsh and unbalanced.
The big news today is Joe Biden running with Barrack. I hope it turns out well. I liked his presentations when the primary debates were going on, I though he was more straightforward and less posturing than any of the others. As a casual observer of his over the years I had previously thought his off the cuff remarks were sometimes rash and not thought through, hopefully that won't be an issue.
I am hoping for a President that can start bringing the country back together. I am sick and tired of everything being a calculated political position. The monumental problems we face cannot be addressed until the President engages the American people in the issues and makes everyone realize that all of us are going to have to part of the solutions. By far our financial situation is the most pressing issue. If we can't get a handle on the national debt we may find that in our lifetime our living standards will diminish much more significantly than they already have.
I think that the President needs to be an inspiration to Americans. Someone who can talk strait and engage the public is a rare gift. That is primarily why I think that Obama will get my vote. I have always respected John McCain, I think he is honest and diligent and I do believe he is a maverick. But I think his time has past and that it is time for a new vision with different energy.
Wonder how many people I can piss off with these comments?
Please take care and live life every day, it is precious.
Rich
Thursday, July 31, 2008
The Good, Bad and Ugly
Hi today to friends and family, one and all. Back to the living.
The Good. This is truly a daily journey. The trick, I am still learning, is how to fully appreciate each day. I have a tendency to waste way too much time. Things I want to do and accomplish end up in the manana pile. It is easy to fall into this trap, perhaps too easy because of the retired time I am able to enjoy.
This trip breaks down to 3 distinct time periods. Week one is not good, more about that later. Week two is recovery where everything is looking up and I can tell that my strength is returning. Then week three rolls around and there is the double edged sword of feeling normal, yet realizing that lurking around the weekend bend ahead is a week one.
Last week was a pleasure. I was walking every day for at least an hour. I managed to go to my favorite gym class, the exercise ball core training both Tuesday and Thursday. Great feeling to sweat the body up and feel that you are helping it to keep strong.
Went to the onc on Friday and he is clearly pleased with the response I am having to the chemo. The only real visible sign that can be monitored is the tumor under my left arm, which had shrunk a great deal more since our last visit. And though the doctor is able to feel a lymph node under my right arm it is very small and it may be normal size.
Over the weekend we spent time at Tahoe and went to Homewood to jazz concert with friends Scot and Teresa from Sacramento. This was a fun but mildly cool and breezy evening. The music, by favorite guitarists of ours Strunz and Farrah was great. They have a blend of music that sounds at once Middle Eastern and South American, I guess due to the fact that that is where they are each from. They had a percussionist with them from Cuba that played a unique Cuban instrument that was a blend of washboard sounds and bongos and greatly enhanced the overall sound. The other group, which we were not personally familiar, was a high energy saxophone player and his group called Euge Groove. Now this is a jaded crowd of listeners, from young adults to quite older patrons. He struggled for a while trying to figure the crowd he was playing to. But in the end he had us all dancing. His high energy and "getting your funk on" style got us all into the act. Truly the mark of a good entertainer.
Sunday was a rush to return to Sacramento to have blood tests done and prepare for Monday. I found that the lab does a good job and I got the results in a couple of hours, so that I could in turn fax them to Stanford so they could look at them early Monday and approve treatment for that day.
The Bad. I am learning to NOT LOOK FORWARD to these Mondays. Although it went smoothly enough, only a 12 hour day instead of the 15 hours of last time, it is still trying. The doctor was glad to see the progress I have made with the reduction of the tumor under the left are being most pronounced. She is talking like 6 treatments may be enough. I will be having a follow up scan done in about two weeks so that they have an objective way of measuring the results to date.
The discussion turned to nausea. What a revolting development that is. When I visited my Kaiser onc he approved three more anti emetic (nausea) drugs to try, I was able to pick all but one up for Monday. So I was carrying 4 different prescriptions (2 preexisting) to Stanford to see what they thought, since I was more or less totally confused about what to do. The last round of chemo had left me very nauseous for 1 1/2 days and I was hoping to mitigate that. Well they did have there own other ideas. So they included an injection into my chemo protocol for another drug that is supposed to last for three days of relief. Sounded good to me. I was reading the order and this drug is not even listed and they had to write it in the area where the symptoms are listed at level 3/4 the most severe. That made me realize I must be pretty sensitive to this stuff. It is funny that after the first round I was not sick, just did not feel well.
Well onto chemo, this went smoothly and the actual administration of the Avastin plus other poisons only took about 3 hours. Much quicker than last time. So we were on the road home by 6:30. I even felt well enough to drive. A good sign I believed.
The Ugly. I appears to be like clockwork. You can almost set your watch by it. The witching hour came and I was making love to the toilet again. Thank goodness I was smarter this time and did not try to eat much after chemo, only nibbling a bit.
I won't dwell on this, but suffice it to say Tuesday was ugly, Wednesday was only a wee bit better and it was not till today that I could really eat anything. But amazingly you get through it and here I sit feeling like I am mending, after having several good meals to help make up for the last 2 days.
Looks like I need to have more discussions with the docs about tweaking the anti emetic drug regimen.
On the bright side the chemo is working, I am more and more optimistic each day. I can literally feel the difference again in the past three days as the tumor shrinks further under my arm. Is is somewhat remarkable.
A Small Accomplishment. I did spend yesterday and today reading Lance Armstrong's "It's Not About The Bike", the tale of his journey to the dark side and then back to the light. It is about his encounter with testicular cancer which metastasized to his brain and lungs, his surgery and chemo battle and his inspirational journey back to new life. Perhaps his biggest lesson learned was the discovery of a purpose for his life that transcended beyond himself to be an inspiration for many others in similar situations. Life is a force to be reckoned with. It is powerful and calls to us.
I wish each and every one of you good health, it is certainly precious. Now I am off to take a walk.
The Good. This is truly a daily journey. The trick, I am still learning, is how to fully appreciate each day. I have a tendency to waste way too much time. Things I want to do and accomplish end up in the manana pile. It is easy to fall into this trap, perhaps too easy because of the retired time I am able to enjoy.
This trip breaks down to 3 distinct time periods. Week one is not good, more about that later. Week two is recovery where everything is looking up and I can tell that my strength is returning. Then week three rolls around and there is the double edged sword of feeling normal, yet realizing that lurking around the weekend bend ahead is a week one.
Last week was a pleasure. I was walking every day for at least an hour. I managed to go to my favorite gym class, the exercise ball core training both Tuesday and Thursday. Great feeling to sweat the body up and feel that you are helping it to keep strong.
Went to the onc on Friday and he is clearly pleased with the response I am having to the chemo. The only real visible sign that can be monitored is the tumor under my left arm, which had shrunk a great deal more since our last visit. And though the doctor is able to feel a lymph node under my right arm it is very small and it may be normal size.
Over the weekend we spent time at Tahoe and went to Homewood to jazz concert with friends Scot and Teresa from Sacramento. This was a fun but mildly cool and breezy evening. The music, by favorite guitarists of ours Strunz and Farrah was great. They have a blend of music that sounds at once Middle Eastern and South American, I guess due to the fact that that is where they are each from. They had a percussionist with them from Cuba that played a unique Cuban instrument that was a blend of washboard sounds and bongos and greatly enhanced the overall sound. The other group, which we were not personally familiar, was a high energy saxophone player and his group called Euge Groove. Now this is a jaded crowd of listeners, from young adults to quite older patrons. He struggled for a while trying to figure the crowd he was playing to. But in the end he had us all dancing. His high energy and "getting your funk on" style got us all into the act. Truly the mark of a good entertainer.
Sunday was a rush to return to Sacramento to have blood tests done and prepare for Monday. I found that the lab does a good job and I got the results in a couple of hours, so that I could in turn fax them to Stanford so they could look at them early Monday and approve treatment for that day.
The Bad. I am learning to NOT LOOK FORWARD to these Mondays. Although it went smoothly enough, only a 12 hour day instead of the 15 hours of last time, it is still trying. The doctor was glad to see the progress I have made with the reduction of the tumor under the left are being most pronounced. She is talking like 6 treatments may be enough. I will be having a follow up scan done in about two weeks so that they have an objective way of measuring the results to date.
The discussion turned to nausea. What a revolting development that is. When I visited my Kaiser onc he approved three more anti emetic (nausea) drugs to try, I was able to pick all but one up for Monday. So I was carrying 4 different prescriptions (2 preexisting) to Stanford to see what they thought, since I was more or less totally confused about what to do. The last round of chemo had left me very nauseous for 1 1/2 days and I was hoping to mitigate that. Well they did have there own other ideas. So they included an injection into my chemo protocol for another drug that is supposed to last for three days of relief. Sounded good to me. I was reading the order and this drug is not even listed and they had to write it in the area where the symptoms are listed at level 3/4 the most severe. That made me realize I must be pretty sensitive to this stuff. It is funny that after the first round I was not sick, just did not feel well.
Well onto chemo, this went smoothly and the actual administration of the Avastin plus other poisons only took about 3 hours. Much quicker than last time. So we were on the road home by 6:30. I even felt well enough to drive. A good sign I believed.
The Ugly. I appears to be like clockwork. You can almost set your watch by it. The witching hour came and I was making love to the toilet again. Thank goodness I was smarter this time and did not try to eat much after chemo, only nibbling a bit.
I won't dwell on this, but suffice it to say Tuesday was ugly, Wednesday was only a wee bit better and it was not till today that I could really eat anything. But amazingly you get through it and here I sit feeling like I am mending, after having several good meals to help make up for the last 2 days.
Looks like I need to have more discussions with the docs about tweaking the anti emetic drug regimen.
On the bright side the chemo is working, I am more and more optimistic each day. I can literally feel the difference again in the past three days as the tumor shrinks further under my arm. Is is somewhat remarkable.
A Small Accomplishment. I did spend yesterday and today reading Lance Armstrong's "It's Not About The Bike", the tale of his journey to the dark side and then back to the light. It is about his encounter with testicular cancer which metastasized to his brain and lungs, his surgery and chemo battle and his inspirational journey back to new life. Perhaps his biggest lesson learned was the discovery of a purpose for his life that transcended beyond himself to be an inspiration for many others in similar situations. Life is a force to be reckoned with. It is powerful and calls to us.
I wish each and every one of you good health, it is certainly precious. Now I am off to take a walk.
Sunday, July 20, 2008
Leaving Comments on This Blog
Hello to all. Thank you so much to those of you that have left comments, I do read all and am very grateful for your support.
Several friends and family have told me that they tried to leave a comment but could not. I wanted to write to see if I can help with this. If you don't have a google account, you need to sign up for one. It is not intrusive and they do not send you junk mail. These are the instructions:
1. Click on "comment" link below one of the blog entries. This takes you to the page where you can leave a comment. At the bottom of this page there is a place to sign in with your user name and password. Sign in before you post a comment. If you don't have an account go to step 2.
2. Below the user name and password boxes it says "No Google Account? Sign up here". Click this link and you go to a page where you can create your user name and password for your Google Account. Create your user name and a password. That is all there is to it.
I do not think you will receive junk mail from this. Google seems good about these issues.
If you have any problems with this pleas let me know. Send me an email at richlehnert@msn.com. Hope this works to clear up the problems. I was truly hoping this would be easy to use.
Thanks
Rich Lehnert
Several friends and family have told me that they tried to leave a comment but could not. I wanted to write to see if I can help with this. If you don't have a google account, you need to sign up for one. It is not intrusive and they do not send you junk mail. These are the instructions:
1. Click on "comment" link below one of the blog entries. This takes you to the page where you can leave a comment. At the bottom of this page there is a place to sign in with your user name and password. Sign in before you post a comment. If you don't have an account go to step 2.
2. Below the user name and password boxes it says "No Google Account? Sign up here". Click this link and you go to a page where you can create your user name and password for your Google Account. Create your user name and a password. That is all there is to it.
I do not think you will receive junk mail from this. Google seems good about these issues.
If you have any problems with this pleas let me know. Send me an email at richlehnert@msn.com. Hope this works to clear up the problems. I was truly hoping this would be easy to use.
Thanks
Rich Lehnert
Thursday, July 17, 2008
Get A Life
Life Interrupted. I guess that is what it feels like the most.
On 7/7 I had treatment #2. Which resulted in the following week being fairly difficult. Nausea and vomiting for a day and half followed by heartburn for the rest of the week. And it was not due to the wild ride of the stock market, although that did not help. You can always count on Carol to have the camera ready and she had to take photos of me sitting in the recliner with bags hanging from the rack and tubes in my arm. Darling shot.
The week also was hot and ugly with smoke and fires all around and not any good fresh air to breath. Don't think I have ever seen it that bad in the Roseville area. We always seem to get some relief from the Delta breeze, not so for that week.
Had to finish the job the chemo started. The amount of hair in the sink and shower was increasing daily and what was left was looking pretty thin and splotchy. So went to Rick and said it was time. Out came the razor and buzz away went the rest of the hair. Talk about startling, every time I pass a mirror I wonder who that is!! This is going to sound awful but the comparison that keeps hitting me is to the image of survivors of the Holocaust. It is such a stark change that even a week later I still do a double take when I see myself.
We took a couple of days and went to Tahoe to get out of the bad air in Roseville. Well the bad air was there also, but not nearly as bad. It is rare when you don't have blue skies most of the time at Tahoe. We did not see blue sky at all this time. However it is always good to be there.
The second week after chemo I find that I am concerned about doing too much or being exposed to people because this is when my blood counts are at their lowest. It is another reason why life is so interrupted. I think I need to break out of this because, other than a daily walk in the evening, I am not doing much (did kick butt at Scrabulous). Oh yeah I fixed the sprinklers. And I watched the stock market go up and down like a yo yo.
We recently watched a documentary DVD called Jesus Camp. That was an eye opener. Kids as young as 10 being indoctrinated and essentially brainwashed by the Evangelical church. These kids are certainly too young to be making their own choice. But the fervor and emotion whipped up by the adult and parent leaders was awesome. Makes me see how something like the polygamist group in Texas could be so powerful in establishing a cult.
Looking forward next week, the third between treatments, should be the best week with blood counts up and feeling most normal. But then the anxiety of the next treatment round will start to set in also. The best advise truly does seem to live one day at a time.
On 7/7 I had treatment #2. Which resulted in the following week being fairly difficult. Nausea and vomiting for a day and half followed by heartburn for the rest of the week. And it was not due to the wild ride of the stock market, although that did not help. You can always count on Carol to have the camera ready and she had to take photos of me sitting in the recliner with bags hanging from the rack and tubes in my arm. Darling shot.
The week also was hot and ugly with smoke and fires all around and not any good fresh air to breath. Don't think I have ever seen it that bad in the Roseville area. We always seem to get some relief from the Delta breeze, not so for that week.
Had to finish the job the chemo started. The amount of hair in the sink and shower was increasing daily and what was left was looking pretty thin and splotchy. So went to Rick and said it was time. Out came the razor and buzz away went the rest of the hair. Talk about startling, every time I pass a mirror I wonder who that is!! This is going to sound awful but the comparison that keeps hitting me is to the image of survivors of the Holocaust. It is such a stark change that even a week later I still do a double take when I see myself.
We took a couple of days and went to Tahoe to get out of the bad air in Roseville. Well the bad air was there also, but not nearly as bad. It is rare when you don't have blue skies most of the time at Tahoe. We did not see blue sky at all this time. However it is always good to be there.
The second week after chemo I find that I am concerned about doing too much or being exposed to people because this is when my blood counts are at their lowest. It is another reason why life is so interrupted. I think I need to break out of this because, other than a daily walk in the evening, I am not doing much (did kick butt at Scrabulous). Oh yeah I fixed the sprinklers. And I watched the stock market go up and down like a yo yo.
We recently watched a documentary DVD called Jesus Camp. That was an eye opener. Kids as young as 10 being indoctrinated and essentially brainwashed by the Evangelical church. These kids are certainly too young to be making their own choice. But the fervor and emotion whipped up by the adult and parent leaders was awesome. Makes me see how something like the polygamist group in Texas could be so powerful in establishing a cult.
Looking forward next week, the third between treatments, should be the best week with blood counts up and feeling most normal. But then the anxiety of the next treatment round will start to set in also. The best advise truly does seem to live one day at a time.
Tuesday, July 8, 2008
Hair Be Gone - Part Deux
A whirlwind and an emotional roller coaster.
Due to go to Stanford leaving at 8:30AM Monday. On Sunday had tests at Kaiser lab (results needed within 24 hours of treatment) in preparation for Monday. Of course the required tests were only sent on Thursday from Stanford to Kaiser, yeah! What are the chances this will come off well? You guessed it, slim to none. So, more tests Monday morning and then the late race to Stanford. Results were slow to come in so additional tests were required at Stanford. You could say it is the kinks of coordination, but that is because I am the optimist. It will work out, and of course it did. Results all OK.
On to chemo, Stanford style. Nice reclining lounge, TV and drugs, lots of drugs. My words to the nurse, "lets kill some cancer". Once we got started it took about 3 hours, but there are a bunch of preliminaries so we didn't walk out till 7:30PM. The nurses and staff were all great, very helpful.
I was feeling fine so off we went to dinner. First big mistake. I knew this too. Never eat some of your favorite foods around chemo time. And eat light. Who was listening to this advice? Not me. Well I paid for it when we got home and I got very familiar with the porcelain goddess, all night long. As you can tell I am feeling somewhat better now, almost 24 hours later. Lesson learned.
Unfortunately, my wife and caregiver didn't just have one patient on her hands, but two. Our 19 year old cat, Sienna has been battling to stay with us for the past couple of months. The vet unfortunately ran out of rabbits to pull out of her hat this time. So Sienna came home this morning for the last time. We had the vet come by and put him to sleep about noon today, very peaceful. Sienna has been a wonderful son and we will both miss him a lot. Carol was especially close with him, as he had the habit of following her around like a duck, wanting to be wherever she was. That couldn't be because he was spoiled, I am sure. The truth is I was jealous of him.
Finally, I think is is time to see the barber. It took 3 weeks but there is no denying it, look out Kojak here I come.
Due to go to Stanford leaving at 8:30AM Monday. On Sunday had tests at Kaiser lab (results needed within 24 hours of treatment) in preparation for Monday. Of course the required tests were only sent on Thursday from Stanford to Kaiser, yeah! What are the chances this will come off well? You guessed it, slim to none. So, more tests Monday morning and then the late race to Stanford. Results were slow to come in so additional tests were required at Stanford. You could say it is the kinks of coordination, but that is because I am the optimist. It will work out, and of course it did. Results all OK.
On to chemo, Stanford style. Nice reclining lounge, TV and drugs, lots of drugs. My words to the nurse, "lets kill some cancer". Once we got started it took about 3 hours, but there are a bunch of preliminaries so we didn't walk out till 7:30PM. The nurses and staff were all great, very helpful.
I was feeling fine so off we went to dinner. First big mistake. I knew this too. Never eat some of your favorite foods around chemo time. And eat light. Who was listening to this advice? Not me. Well I paid for it when we got home and I got very familiar with the porcelain goddess, all night long. As you can tell I am feeling somewhat better now, almost 24 hours later. Lesson learned.
Unfortunately, my wife and caregiver didn't just have one patient on her hands, but two. Our 19 year old cat, Sienna has been battling to stay with us for the past couple of months. The vet unfortunately ran out of rabbits to pull out of her hat this time. So Sienna came home this morning for the last time. We had the vet come by and put him to sleep about noon today, very peaceful. Sienna has been a wonderful son and we will both miss him a lot. Carol was especially close with him, as he had the habit of following her around like a duck, wanting to be wherever she was. That couldn't be because he was spoiled, I am sure. The truth is I was jealous of him.
Finally, I think is is time to see the barber. It took 3 weeks but there is no denying it, look out Kojak here I come.
Thursday, July 3, 2008
Clinical Trial - Stanford
On Monday 6/30 Carol and I went to see Dr. Ganjoo at Stanford. After an exam and discussion I signed the paperwork to enroll in her clinical trial. This trial uses the standard chemo therapy (CHOP) in conjunction with a test drug (Avastin). The hope is that this combination will work better than either by themselves. Avastin works to block the growth of blood vessels to tumors thereby cutting them off from their supply of oxygen and helping to kill them. I will be receiving the first treatment on 7/7/08.
My strength has been returning more each day and for the past week I have felt almost normal. Have been walking every day and went to the gym the past 2 days. The tumor under my left arm has continued to shrink and is probably smaller now than it was before this whole thing exploded June 7th. So the good news is that the chemo has worked.
The hope now is for a complete remission. After the 3rd round of chemo there will be an evaluation of my status to see how good the response has been. A new Pet/CT will be taken to compare with the one taken on June 14th. The hope is that it will not show anything. If it does not show any activity that will be considered a complete response. It is not the same as a cure. There really is no known cure. If you go for 5 years without any detectable activity (tumors) that is about as close to a cure as there is in the cancer world.
Wish me luck.
My strength has been returning more each day and for the past week I have felt almost normal. Have been walking every day and went to the gym the past 2 days. The tumor under my left arm has continued to shrink and is probably smaller now than it was before this whole thing exploded June 7th. So the good news is that the chemo has worked.
The hope now is for a complete remission. After the 3rd round of chemo there will be an evaluation of my status to see how good the response has been. A new Pet/CT will be taken to compare with the one taken on June 14th. The hope is that it will not show anything. If it does not show any activity that will be considered a complete response. It is not the same as a cure. There really is no known cure. If you go for 5 years without any detectable activity (tumors) that is about as close to a cure as there is in the cancer world.
Wish me luck.
Sunday, June 29, 2008
The Journey Begins
November 2007. The diagnosis is lymphoma. Oh my god! Now what? Just retired from my working career and now looking squarely at the end of the journey, interrupted and in mid sentence. I have set this blog up to keep my friends and family updated with the moments, months and years (god willing) of this, my most challenging journey. Please support me with your wisdom, insights, experiences and maybe some jokes for levity.
For about 2 years a innocuous looking lump grew under the skin on my right forearm. It started out the size of pimple and became larger that a nickel by summer 07. A biopsy showed that this was some form of lymphoma. Alarms and bells. Off to see the onc (Oncologist). Tests. Complete blood, bone marrow sample (some have said this test is awful, not so for me, it was a breeze) and CT scan. On November 2nd the lump was removed surgically along with a lymph node from my groin. These samples were sent for lab testing and diagnosis. The results were anaplastic large t cell lymphoma (ALCL), CD30+ and ALK-1 negative. This is a rare lymphoma that is diagnosed (the best I can tell) in only a few hundred people in a year. I have been searching for months now and have only found a handful with it. I must admit that it was hard for me to believe. I felt great, my blood work was normal, the bone marrow test was normal and I had no symptoms of this often fatal disease. However, after a visit to Stanford and after they reviewed all the samples and confirmed the diagnosis I had to accept it.
The question was what to do now? Here is where it gets dicey. Stanford recommended treatment and in my opinion never changed or wavered from that. Stanford offered my enrollment in one of two clinical trials that they were running. My Kaiser onc, on the other hand, said lets take another CT scan and see what is going on now, as it was now early January and 2 months had passed since the initial scan. This scan confirmed that there was little activity or growth. I admit I was scared about the idea of being treated, by now I had read too much about chemo therapy and I did not like what I read. My Kaiser onc suggested that it would be OK to Watch and Wait since the lymphoma was not growing. In fact this is a recognized strategy, just not usually seen in ALCL since this is normally aggressive. So we decided to give it a couple of months and see.
In March I had another round of blood tests and a CT scan. Again these showed that there was small growth on one lymph node and no growth on others or in fact they could no longer be seen at all. More watch and wait. In hindsight I should have been more concerned about the one node that did show some growth. I believe I was a willing partner in self deception.
I decided at this point to get on with my life. Planning a trip to Yosemite and Hawaii. Heck I felt great. I was eating well, I was exercising a lot, I was skiing and hiking and felt as good as I had in years.
In the mean time I was also studying everything I could and reading books and articles about the latest in lymphoma research and treatment options and clinical trials results for new drugs. I was talking to doctors, emailing with researchers and in May I went to the American Society of Clinical Oncologists annual meeting in Chicago. I felt like I knew what I was doing and that I was better able to help myself this way. I went on a couple of different regimens of supplements for a couple of months at a time, trying to see if I essentially could cure myself. The mind is a powerful tool and I was convinced my own knowledge was power.
To make a long story shorter all this changed the weekend of June 7th. I went for a hike on that Saturday at Echo Summit to help prepare for the Yosemite hiking trip that was coming up. By that night the area under my left arm where I had been tracking the only lymph node I could actually feel suddenly exploded and swelled up and became painful. By Monday I could barely lower my arm to my side.
I immediately set an appointment with the onc for Tuesday. He looked at it and wanted to remove it now. The surgeon looked at it on Thursday and said no it had to be shrunk before that could be done. A Pet/CT scan followed on Saturday and a follow up bone marrow test on Monday along with a heart function test needed before you can start chemo therapy to see how strong your heart is. The Pet/CT scan results viewed on that Monday were frightening, there was evidence of activity in several new places. Chemo was needed and needed immediately. So on Monday 6/16 I was admitted to the hospital for an overnight stay so that chemo therapy could be administered.
I was given the standard of chemo that has been the same for the past 25 years. It is called CHOP and consists of (3) poisons administered by IV and Prednisone that is administered orally in a high dose for 5 days. Some of the poisons are so toxic that the nurse has to wear protective clothing in case any spills or splashes on them. If it leaks outside of your vein it can cause permanent tissue damage.
The good news is that I tolerated the first round reasonably well and the visible tumor under my left arm has shrunk dramatically in the past 2 weeks. It is still there but much smaller than two weeks ago. I experienced only very mild nausea (thanks to mitigating medication) and was even able to go to the gym the first week and have been walking almost every day. The biggest effect is the hard fall from Prednisone. After 5 days you are pretty much slammed to earth with fatigue and depression for (in my case) 2 days. Since then I have recovered steadily each day with more strength and stamina. So that after 2 weeks I pretty much feel normal. There are other potential side effects of the chemo which I have not experienced (this may change after subsequent rounds of treatment). I still have my hair.
After the initial panic subsided and Carol and I had a heart to heart talk with my onc we decided that I will enroll in a clinical trial at Stanford. I am going to visit the doctor there tomorrow and complete the enrollment. This will mean that I will be receiving the standard chemo therapy along with an investigational drug that has a newer mechanism of action. It has been demonstrated to help to block the growth of new blood vessels to the tumor, thereby helping to deny the tumor oxygen and helping to kill it. There are potential side effects of this also, so we will have to wait and see how I react to it. There is no free lunch with any of this. I will be receiving 6-8 rounds of treatment every 3 weeks at Stanford. Next treatment will be on or about 7/7/08.
Longer term, assuming I achieve a complete remission, I am probably going to proceed into an autologous stem cell transplant. This is a technique where your own stem cells are harvested and filtered. You are given additional high doses of chemo therapy to hopefully kill any remaining lymphoma cells in your body and then your own stem cells are reintroduced to rebuild your immune system. The results of this are still controversial however the research I have done suggests it will likely improve my long term survival.
I will conclude this first post at this time. I will keep updating this as new chapters are lived. Please make an entry to let me know you were here. It does mean a great deal to me to be able to share this journey with the friends and family I love.
Thank you,
Richard
For about 2 years a innocuous looking lump grew under the skin on my right forearm. It started out the size of pimple and became larger that a nickel by summer 07. A biopsy showed that this was some form of lymphoma. Alarms and bells. Off to see the onc (Oncologist). Tests. Complete blood, bone marrow sample (some have said this test is awful, not so for me, it was a breeze) and CT scan. On November 2nd the lump was removed surgically along with a lymph node from my groin. These samples were sent for lab testing and diagnosis. The results were anaplastic large t cell lymphoma (ALCL), CD30+ and ALK-1 negative. This is a rare lymphoma that is diagnosed (the best I can tell) in only a few hundred people in a year. I have been searching for months now and have only found a handful with it. I must admit that it was hard for me to believe. I felt great, my blood work was normal, the bone marrow test was normal and I had no symptoms of this often fatal disease. However, after a visit to Stanford and after they reviewed all the samples and confirmed the diagnosis I had to accept it.
The question was what to do now? Here is where it gets dicey. Stanford recommended treatment and in my opinion never changed or wavered from that. Stanford offered my enrollment in one of two clinical trials that they were running. My Kaiser onc, on the other hand, said lets take another CT scan and see what is going on now, as it was now early January and 2 months had passed since the initial scan. This scan confirmed that there was little activity or growth. I admit I was scared about the idea of being treated, by now I had read too much about chemo therapy and I did not like what I read. My Kaiser onc suggested that it would be OK to Watch and Wait since the lymphoma was not growing. In fact this is a recognized strategy, just not usually seen in ALCL since this is normally aggressive. So we decided to give it a couple of months and see.
In March I had another round of blood tests and a CT scan. Again these showed that there was small growth on one lymph node and no growth on others or in fact they could no longer be seen at all. More watch and wait. In hindsight I should have been more concerned about the one node that did show some growth. I believe I was a willing partner in self deception.
I decided at this point to get on with my life. Planning a trip to Yosemite and Hawaii. Heck I felt great. I was eating well, I was exercising a lot, I was skiing and hiking and felt as good as I had in years.
In the mean time I was also studying everything I could and reading books and articles about the latest in lymphoma research and treatment options and clinical trials results for new drugs. I was talking to doctors, emailing with researchers and in May I went to the American Society of Clinical Oncologists annual meeting in Chicago. I felt like I knew what I was doing and that I was better able to help myself this way. I went on a couple of different regimens of supplements for a couple of months at a time, trying to see if I essentially could cure myself. The mind is a powerful tool and I was convinced my own knowledge was power.
To make a long story shorter all this changed the weekend of June 7th. I went for a hike on that Saturday at Echo Summit to help prepare for the Yosemite hiking trip that was coming up. By that night the area under my left arm where I had been tracking the only lymph node I could actually feel suddenly exploded and swelled up and became painful. By Monday I could barely lower my arm to my side.
I immediately set an appointment with the onc for Tuesday. He looked at it and wanted to remove it now. The surgeon looked at it on Thursday and said no it had to be shrunk before that could be done. A Pet/CT scan followed on Saturday and a follow up bone marrow test on Monday along with a heart function test needed before you can start chemo therapy to see how strong your heart is. The Pet/CT scan results viewed on that Monday were frightening, there was evidence of activity in several new places. Chemo was needed and needed immediately. So on Monday 6/16 I was admitted to the hospital for an overnight stay so that chemo therapy could be administered.
I was given the standard of chemo that has been the same for the past 25 years. It is called CHOP and consists of (3) poisons administered by IV and Prednisone that is administered orally in a high dose for 5 days. Some of the poisons are so toxic that the nurse has to wear protective clothing in case any spills or splashes on them. If it leaks outside of your vein it can cause permanent tissue damage.
The good news is that I tolerated the first round reasonably well and the visible tumor under my left arm has shrunk dramatically in the past 2 weeks. It is still there but much smaller than two weeks ago. I experienced only very mild nausea (thanks to mitigating medication) and was even able to go to the gym the first week and have been walking almost every day. The biggest effect is the hard fall from Prednisone. After 5 days you are pretty much slammed to earth with fatigue and depression for (in my case) 2 days. Since then I have recovered steadily each day with more strength and stamina. So that after 2 weeks I pretty much feel normal. There are other potential side effects of the chemo which I have not experienced (this may change after subsequent rounds of treatment). I still have my hair.
After the initial panic subsided and Carol and I had a heart to heart talk with my onc we decided that I will enroll in a clinical trial at Stanford. I am going to visit the doctor there tomorrow and complete the enrollment. This will mean that I will be receiving the standard chemo therapy along with an investigational drug that has a newer mechanism of action. It has been demonstrated to help to block the growth of new blood vessels to the tumor, thereby helping to deny the tumor oxygen and helping to kill it. There are potential side effects of this also, so we will have to wait and see how I react to it. There is no free lunch with any of this. I will be receiving 6-8 rounds of treatment every 3 weeks at Stanford. Next treatment will be on or about 7/7/08.
Longer term, assuming I achieve a complete remission, I am probably going to proceed into an autologous stem cell transplant. This is a technique where your own stem cells are harvested and filtered. You are given additional high doses of chemo therapy to hopefully kill any remaining lymphoma cells in your body and then your own stem cells are reintroduced to rebuild your immune system. The results of this are still controversial however the research I have done suggests it will likely improve my long term survival.
I will conclude this first post at this time. I will keep updating this as new chapters are lived. Please make an entry to let me know you were here. It does mean a great deal to me to be able to share this journey with the friends and family I love.
Thank you,
Richard
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