Boy, it's been awhile and there is a lot to tell about. It seems that the post-transplant road is not always smooth and makes many a twist and turn.
You'll remember that around 100 days post-transplant Clyde was living apparently cancer-free. We were all ecstatic and loving that Clyde was feeling well. She was going to work and going for walks. Life, it seemed, was returning to normal. Clyde was coaching me on how to live with the situation as it was. "You can't worry about the other shoe dropping," she would tell me. I was trying but not buying in completely.
A few weeks later, Clyde noticed a swollen lymph node in her groin and one in her neck. Swollen nodes are a classic symptom of lymphoma and other diseases. She tried not to panic but brought it to the attention of her transplant doctor at her next appointment.
Dr. Longo didn't freak out at what he observed during the visit. He reassured Clyde that there had been some latent lymphoma cells in her system that the transplant hadn't yet eliminated. In his words it was time to "unleash the beast" that is her new immune system. He took her off of tacrilimus, the immune suppressing drug, and cut her prednisone prescription way down. This was designed to ramp up the anti-cancer activity in her body.
A couple of weeks passed and though the swelling in her affected lymph nodes was reduced, Wally, as Clyde calls him (not to his face), was not satisfied. He ordered another full-body CAT scan.
After the scan was completed it was apparent that Cylde's spleen was quite enlarged. The spleen is, in effect, your largest lymph node. From the pictures, the medical team could see that something, likely lymphoma, was collecting in hers. Another course of action must be taken.
The next step in eliminating Clyde's lymphoma was to infuse her with more cells from me.
We weren't surprised by this. On the day in late September that I went for my lab work with Jan, she informed me of the possibility that one day I would be called back to Madison to deliver more cells. Dr. Hamati confirmed that on the day that Clyde got the t-cells. It turns out that close to 50% of t-cell transplant recipients go through this stage as well. There was nothing to be concerned about. It's routine.
All Clyde could do was wait. Dr. Longo put her on a cycle of Rituxin (a drug that targets only cancer cells) that would last four weeks. At that point I would swoop in, drop off some white blood cells and we'd all see what happened.
We don't know why but two things happened during this period. One, Clyde lost all energy. She would have to lay down for a while after taking a shower. She could do nothing which is very hard on your mental state. Not only had she been dealt a major set-back, she was bored out of her mind.
The second change was that she couldn't seem to produce or hold onto any red blood cells. Every week she would be transfused with between two and four units of red blood. It was an agonizing cycle with no good explaination or end in sight. It has been a grueling few weeks.
While Clyde's energy level continued to deteriorate, I was making travel plans for Madison. I made plans to fly home on the 1st of April and home on the 4th. As it turns out, I had the dates wrong. The hospital couldn't do the procedure then. No problem, I'll make a change. I was sure that when I explained the situation to the good people at Frontier Airlines, they would wave the change fee. It's interesting that as the airline industry flails, they counter it by making the experience of doing business with them as bad as possible. Their response, "NO!"
I arrived at the hospital on the morning of the 9th. The procedure was exactly the same as when the t-cells were harvested but without the Neupogen to promote white blood cell growth in my body. The target this time around was mature lymphocytes, the cells that fight disease and infection. I was connected to the apheresis machine by 9a and the process was over before 1p. Nothing to it.
Samples of my blood were sent to the lab to confirm that I do not have hepatitus or HIV. This gave Clyde a few days to recover a bit from the Rituxin. On Friday the 16th, she was infused with 54ml of the harvested cells. She'll receive another dose in a month or so and maybe a third dose a month after that. We'll wait about ten days to see if there is any effect from the first dose. Neither Clyde or I know what the signs will be but it ten days we'll see them.
The first good news in weeks was delivered that morning as well. For the first time in ages, Clyde did not "need" a transfusion. Her red blood cell levels were within the acceptable range. She was given a choice to get some cells or not. She took them.
Clyde has her first doctors' appointment since the treatment tomorrow. I don't know what she'll learn about the activity of the new cells but she will get news on her RBC levels. I'll let you know what she learns.
In a way it feels like we've started over. Any positive vibe you can send out into the universe will be greatly appreciated.
Be well.
Showing posts with label t-cells. Show all posts
Showing posts with label t-cells. Show all posts
Monday, April 19, 2010
Friday, March 19, 2010
Return to a Positive Mind-frame
I spoke to Clyde this morning. It always makes me feel better when I do. Her strength and ability to appreciate the "here and now" are reassuring. I hope that someday, I too will have that quality of spirit. After we discussed her recent Rituxin treatment, we laughed hard about life. The strength provided by the knowledge that we're fighting this together is profound. I feel like we share a remarkable bond.
I made my flight arrangements for my next voyage back to Madison. This trip, I will provide lymphocytes that will be transfused into Clyde. The medical team will use the same blood separating process that was employed the first go-around. The procedure, called apheresis, will take blood out of one arm, separate the needed cells and then replace the blood in my other arm. It takes about three and a half hours but is not painful. The harvested blood cells are supposed to "jump-start" the anti-cancer effects of Clyde's new immune system. When I spoke to Jan, the transplant coordinator, yesterday she confirmed that around 50% of t-cell transplant patients get this form of booster shot. To use her language, it will help us "get out in front" of the disease again.
I think I finally realized the angst I was feeling about Clyde's current condition was more about me than it was her health. I'm aware of how selfish that sounds but it's completely honest. The reality is that I was ready to be the hero. I wanted to be the person that cured Clyde's cancer. Yeah, that sounds a bit sick but it's the truth. It is unbelievably gratifying to think that you've been able to do that for another human being. The fact that we're having to go back and do remedial work felt like a defeat.
I asked Jan point blank if we should consider the transplant process a failure and she insisted that it wasn't. Remember her language, "we just need to get out in front" of the disease. Fifty percent of patients get additional cells and that lasting remission is a real possibility. Right now the lymphoma has gained some ground but the fight is not over. We are going to win.
When my kids are going to an audition or competition, I remind them that they cannot make the judges pick them as the winner. All they can do is their best. What happens after that is in someone else's hands. I need to remind myself of that as well. All I can do, all the medical team can do, is our best. Nature, chemistry and biology will take it from there. Fortunately, the medical technology and expertise are on our side. Add that to Clyde's positive outlook and I feel good about our chances.
I'm looking forward to going back and contributing again to Clyde's return to good health. I'm confident that this next step will help us get to the tipping point. With my cells and Clyde's strength I don't see how we can be denied.
Thank you again for your support and good wishes. The energy created will help Clyde get to the state of good health she deserves.
Be well.
I made my flight arrangements for my next voyage back to Madison. This trip, I will provide lymphocytes that will be transfused into Clyde. The medical team will use the same blood separating process that was employed the first go-around. The procedure, called apheresis, will take blood out of one arm, separate the needed cells and then replace the blood in my other arm. It takes about three and a half hours but is not painful. The harvested blood cells are supposed to "jump-start" the anti-cancer effects of Clyde's new immune system. When I spoke to Jan, the transplant coordinator, yesterday she confirmed that around 50% of t-cell transplant patients get this form of booster shot. To use her language, it will help us "get out in front" of the disease again.
I think I finally realized the angst I was feeling about Clyde's current condition was more about me than it was her health. I'm aware of how selfish that sounds but it's completely honest. The reality is that I was ready to be the hero. I wanted to be the person that cured Clyde's cancer. Yeah, that sounds a bit sick but it's the truth. It is unbelievably gratifying to think that you've been able to do that for another human being. The fact that we're having to go back and do remedial work felt like a defeat.
I asked Jan point blank if we should consider the transplant process a failure and she insisted that it wasn't. Remember her language, "we just need to get out in front" of the disease. Fifty percent of patients get additional cells and that lasting remission is a real possibility. Right now the lymphoma has gained some ground but the fight is not over. We are going to win.
When my kids are going to an audition or competition, I remind them that they cannot make the judges pick them as the winner. All they can do is their best. What happens after that is in someone else's hands. I need to remind myself of that as well. All I can do, all the medical team can do, is our best. Nature, chemistry and biology will take it from there. Fortunately, the medical technology and expertise are on our side. Add that to Clyde's positive outlook and I feel good about our chances.
I'm looking forward to going back and contributing again to Clyde's return to good health. I'm confident that this next step will help us get to the tipping point. With my cells and Clyde's strength I don't see how we can be denied.
Thank you again for your support and good wishes. The energy created will help Clyde get to the state of good health she deserves.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
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Tuesday, March 16, 2010
So, You Thought It Was Over
It would seem a logical conclusion that all is well since there haven't been any new posts in over a month. Unfortunately, that isn't exactly the case. Clyde is doing well to be sure but complications are still lurking about.
A short while ago Clyde had a full-body CAT scan that showed no traces of cancer. As you'll recall, that left us all dizzy with excitement. In the weeks that followed, however, Clyde began to feel lymph nodes that were growing as lymphoma cells collected in them. While typical for someone in Clyde's stage of a t-cell transplant, we were all taken by surprise. This was the first negative news of the entire procedure.
Clyde's doctor was not at all alarmed by the emergence of the lymph nodes. He had mentioned to Clyde and Tom that some cancer cells likely remained. His response was to, as he put it, "unleash the beast." "The beast", in this case, are the new immune cells that Clyde's body is making since having grown bone marrow genetically identical to mine.
To this point she had been taking a drug call Tacrolimus. This medication prevented her new immune system from "rejecting" her body in a condition called Graft versus Host Disease. By preventing GvHD, the Tacrolimus also slowed her new immunity from attacking remaining cancer cells. In the presence of lymphoma symptoms, the newly acquired immune system has to be put into action, GvHD be damned.
The Tacrolimus was put on the shelf with the thought that Clyde would then kill the cancer cells on her own. Follow-up doctor visits showed some progress against the swollen lymph nodes but it was decided that another full-body CAT scan was in order. In the meantime, Clyde was given several transfusions of red blood cells as those counts fluctuated wildly, a by-product of the new immune system working.
The CAT scan was today. Some of her lymph nodes appear to be slightly enlarged but there weren't any that were alarming. The one symptom of note is that Clyde's spleen is considerably larger than it should be. Her doctor, while not panicked, is treating this as something that requires attention soon.
Tomorrow, Clyde is having another transfusion of red blood cells as well as a dose of Rituxin, a monoclonal antibody that attacks cancer cells without harming normal cells. Additionally, I will be flying to Madison sometime in the next ten days or so to provide some supplemental blood cells. Those will be transfused into Clyde to "jump start" her own anti-cancer immune response. Dr. Longo assures Clyde that 50% of t-cell transplant patients receive additional cells at some point. This step could be considered routine.
Clyde describes this new turn of events as a "kick in the gut" but remains positive about the outcome. "This is how it is" she reminds me. With that, we're both able to resolve ourselves to the task of kicking some cancer butt. With help from all of you in the form of positive vibes, thoughts and prayers, Clyde will be back on the trail of good news and improving health soon.
I promise to keep everyone posted on how this new chapter plays out. In the meantime, keep a positive thought.
Be well.
A short while ago Clyde had a full-body CAT scan that showed no traces of cancer. As you'll recall, that left us all dizzy with excitement. In the weeks that followed, however, Clyde began to feel lymph nodes that were growing as lymphoma cells collected in them. While typical for someone in Clyde's stage of a t-cell transplant, we were all taken by surprise. This was the first negative news of the entire procedure.
Clyde's doctor was not at all alarmed by the emergence of the lymph nodes. He had mentioned to Clyde and Tom that some cancer cells likely remained. His response was to, as he put it, "unleash the beast." "The beast", in this case, are the new immune cells that Clyde's body is making since having grown bone marrow genetically identical to mine.
To this point she had been taking a drug call Tacrolimus. This medication prevented her new immune system from "rejecting" her body in a condition called Graft versus Host Disease. By preventing GvHD, the Tacrolimus also slowed her new immunity from attacking remaining cancer cells. In the presence of lymphoma symptoms, the newly acquired immune system has to be put into action, GvHD be damned.
The Tacrolimus was put on the shelf with the thought that Clyde would then kill the cancer cells on her own. Follow-up doctor visits showed some progress against the swollen lymph nodes but it was decided that another full-body CAT scan was in order. In the meantime, Clyde was given several transfusions of red blood cells as those counts fluctuated wildly, a by-product of the new immune system working.
The CAT scan was today. Some of her lymph nodes appear to be slightly enlarged but there weren't any that were alarming. The one symptom of note is that Clyde's spleen is considerably larger than it should be. Her doctor, while not panicked, is treating this as something that requires attention soon.
Tomorrow, Clyde is having another transfusion of red blood cells as well as a dose of Rituxin, a monoclonal antibody that attacks cancer cells without harming normal cells. Additionally, I will be flying to Madison sometime in the next ten days or so to provide some supplemental blood cells. Those will be transfused into Clyde to "jump start" her own anti-cancer immune response. Dr. Longo assures Clyde that 50% of t-cell transplant patients receive additional cells at some point. This step could be considered routine.
Clyde describes this new turn of events as a "kick in the gut" but remains positive about the outcome. "This is how it is" she reminds me. With that, we're both able to resolve ourselves to the task of kicking some cancer butt. With help from all of you in the form of positive vibes, thoughts and prayers, Clyde will be back on the trail of good news and improving health soon.
I promise to keep everyone posted on how this new chapter plays out. In the meantime, keep a positive thought.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Monday, January 4, 2010
Remarkable
It's time to write the post I've been dreaming about for months and I don't know what to say. As many of you know, Clyde had a complete work-up today at the clinic. The medical team was looking very closely in an attempt to discover how the transplant was doing in the fight against Clyde's lymphoma. In addition to the usual blood work, the plan was to do a total body CAT scan and compare the results to CAT scans taken before the transplant. In the scan the doctors can see the extent to which the lymphoma is causing swelling in lymph nodes, the spleen, the liver and the kidneys. The greater the swelling, the greater the cancer involvement.
When Dr. Longo came into the exam room to discuss test results, he didn't want to talk about the blood test results. He wanted to share with Clyde that the CAT scan results were completely, absolutely, normal. All the lymph nodes, the spleen, the liver that had been swollen with cancer cells were now normal in size. There are no signs of lymphoma. As far as Clyde's doctors are concerned, the transplant is, at the moment, kicking some cancer ass.
If you're reading this and sensing an absence of enthusiasm it's because none of us really know what to feel about this news. Nobody seems to have the language to express the joy we're all feeling about the fact that it appears that Clyde has her health back. What do you say when someone thanks you for helping her feel better than she's felt in two and a half years? What would your reaction be if you were a parent learning that your child now has a chance at a normal life without reliance on chemo for a marginal existence. Put yourself in the shoes of anyone close to Clyde and the enormity of this news becomes almost overwhelming.
In the days to come I hope that I'll get my head around the miraculous success we're experiencing. I apologize for the scattered nature of this post. In the meantime know that Clyde appears to be cancer free and that your positive thoughts and prayers played a major role.
Send Clyde a note on her Facebook page at
www.facebook.com/home.php#/profile.php?id=1136971466 (copy the address and paste into your browser)
I know she'll appreciate hearing from you.
Be well.
When Dr. Longo came into the exam room to discuss test results, he didn't want to talk about the blood test results. He wanted to share with Clyde that the CAT scan results were completely, absolutely, normal. All the lymph nodes, the spleen, the liver that had been swollen with cancer cells were now normal in size. There are no signs of lymphoma. As far as Clyde's doctors are concerned, the transplant is, at the moment, kicking some cancer ass.
If you're reading this and sensing an absence of enthusiasm it's because none of us really know what to feel about this news. Nobody seems to have the language to express the joy we're all feeling about the fact that it appears that Clyde has her health back. What do you say when someone thanks you for helping her feel better than she's felt in two and a half years? What would your reaction be if you were a parent learning that your child now has a chance at a normal life without reliance on chemo for a marginal existence. Put yourself in the shoes of anyone close to Clyde and the enormity of this news becomes almost overwhelming.
In the days to come I hope that I'll get my head around the miraculous success we're experiencing. I apologize for the scattered nature of this post. In the meantime know that Clyde appears to be cancer free and that your positive thoughts and prayers played a major role.
Send Clyde a note on her Facebook page at
www.facebook.com/home.php#/profile.php?id=1136971466 (copy the address and paste into your browser)
I know she'll appreciate hearing from you.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Sunday, January 3, 2010
Think Positive Thoughts...Please
Tomorrow Clyde will have a complete health evaluation that will tell us how the transplant is working against the lymphoma. Though anxious, Clyde is excited to hear that her new immune system is winning the battle she's been fighting since 1988. The testing will take all day but I will update as soon as I hear from her.
Over night, please put all of your positive energy out there to help Clyde get the news that there are no remaining signs of her cancer.
Tomorrow is a big day for "Team Clyde." All of the well-wishes you have offered over the last few months have made you a part of that team. We're about to learn that we are winning.
Be well.
Over night, please put all of your positive energy out there to help Clyde get the news that there are no remaining signs of her cancer.
Tomorrow is a big day for "Team Clyde." All of the well-wishes you have offered over the last few months have made you a part of that team. We're about to learn that we are winning.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Thursday, December 24, 2009
It's a Merry Christmas
Lindsay has a huge shamrock plant that she's had for a very long time. It's a magnificant plant with broad leaves that open and close as the day runs it's course. Last fall, as the economy and the country's sense of confidence and well-being went into the toilet, the shamrock acquired some sort of shamrock disease. The plant became weak and started losing it's color. Bugs invaded it and it appeared as though the shamrock was doomed.
Lindsay happens to be very good with things that grow. She did some research and learned about methods she could try to revive her prized plant. I came home one day and the shamrock had been thinned and cut way back. She had applied a pesticide to rid the plant of bugs. Now it became a matter of regular watering and watching to see how the silent plant friend would respond.
Over the next several weeks, maybe months, the shamrock started to come to life. I didn't really notice but the leaves became thicker and a deeper green. The plant was getting healthy.
With the economy in the toilet our business was also down the drain. Lindsay and I were feeling great stress about the prospect of our main source of income being down the drain and my pending unemployment from my skiing job. One gray spring morning we were sitting in the kitchen sharing our thoughts of dread and gloom when at the same time we noticed that right in the middle of our newly revived and flourishing shamrock, was a single white flower.
The realization that we had noticed this sign of health and life stopped our conversation immediately. I think we both had a tear in our eye because here, right in front of us, was a profound symbol of rebirth. The shamrock that had been on death's door was alive and well. For me it was affirmation that things were going to get better.
As it turns out, the shamrock is a metaphor for a far more important return to health. Since late September and early October we have seen Clyde experience a very similar metamorphosis. A woman that was thin and weak and gray is now bright and strong and full of life. Her fears and apprehensions about her future and longetivity are turning to excitement and anticipation for what a healthy life holds for her.
We all understand that Clyde is not yet out of the woods. While her current health is better than it's been in years we still don't know about the anti-cancer effects of the transplant. That's to be determined in the next few weeks. We do know that now there is a good chance for recovery and health and that alone is the type of miracle that we hear and talk so much about at this time of year.
The flower in the shamrock didn't represent the business recovery Lindsay and I were thinking about when we noticed it. Instead it was a symbol for something far more significant. When compared to a picture I took of Clyde in Kay's kitchen at the end of September to one taken by Rooch on Monday, I can see a white flower among the lush leaves of a reborn plant.
Merry Christmas to all of you and thank you for prayers and good wishes all year.
Be well.
Lindsay happens to be very good with things that grow. She did some research and learned about methods she could try to revive her prized plant. I came home one day and the shamrock had been thinned and cut way back. She had applied a pesticide to rid the plant of bugs. Now it became a matter of regular watering and watching to see how the silent plant friend would respond.
Over the next several weeks, maybe months, the shamrock started to come to life. I didn't really notice but the leaves became thicker and a deeper green. The plant was getting healthy.
With the economy in the toilet our business was also down the drain. Lindsay and I were feeling great stress about the prospect of our main source of income being down the drain and my pending unemployment from my skiing job. One gray spring morning we were sitting in the kitchen sharing our thoughts of dread and gloom when at the same time we noticed that right in the middle of our newly revived and flourishing shamrock, was a single white flower.
The realization that we had noticed this sign of health and life stopped our conversation immediately. I think we both had a tear in our eye because here, right in front of us, was a profound symbol of rebirth. The shamrock that had been on death's door was alive and well. For me it was affirmation that things were going to get better.
As it turns out, the shamrock is a metaphor for a far more important return to health. Since late September and early October we have seen Clyde experience a very similar metamorphosis. A woman that was thin and weak and gray is now bright and strong and full of life. Her fears and apprehensions about her future and longetivity are turning to excitement and anticipation for what a healthy life holds for her.
We all understand that Clyde is not yet out of the woods. While her current health is better than it's been in years we still don't know about the anti-cancer effects of the transplant. That's to be determined in the next few weeks. We do know that now there is a good chance for recovery and health and that alone is the type of miracle that we hear and talk so much about at this time of year.
The flower in the shamrock didn't represent the business recovery Lindsay and I were thinking about when we noticed it. Instead it was a symbol for something far more significant. When compared to a picture I took of Clyde in Kay's kitchen at the end of September to one taken by Rooch on Monday, I can see a white flower among the lush leaves of a reborn plant.
Merry Christmas to all of you and thank you for prayers and good wishes all year.
Be well.
Labels:
cancer,
cure,
donor,
health,
t-cell transplant,
t-cells,
transplant,
treatment
Friday, December 4, 2009
Beginning of a New Chapter?
It's been a while since you've been updated on Clyde's condition. I spoke with her yesterday as I always do on the days she visits the clinic. She had an appointment with Dr. Longo on Thursday and was again very excited by how well he thinks things are going. When you're facing a procedure like a t-cell transplant that cannot be undone, you're putting a lot of trust in your medical team. That's been Clyde's life for the last few months so she hangs on the words coming out of Longo's mouth. He is nothing but positive.
The blood work shows that all of her counts are steady or rising. The key markers are in the "normal" range. They are continuing to cut back on Prednisone and are happy with how her body and "my" cells are playing together. We're getting to the point when I should stop referring to her blood cells as "mine." (the period is inside the quotation marks, Lance, did I do that right?) At this point she has new bone marrow that is producing new blood cells all the time. Those cells are hers and only hers. It's absolutely amazing if you ask me. Our entire family walks around shaking our heads in disbelief at how fortunate we've been through the process. I can only imagine how Clyde feels.
I do know that she feels well enough to go to work for a couple of hours a few days a week. I'm afraid that people will see her out and think that she's out of the woods and all healed. She's not, yet. When she reported to her doctor that she was feeling head congestion he immediately prescribed antibiotics - strong antibiotics and lots of them. Infections still need to be beaten down swiftly and soundly as no one really knows how strong her immune system is.
Despite a head full of snot, Clyde feels well. I don't know if you know anyone like this, but when I talk to Clyde I can hear her appreciation for health and life in every word. She is a person that is living every moment in the way it should be lived. What a lesson that is for the rest of us. We all gripe about this and that when in fact we should recognize the miracle that is every moment. We should all do ourselves a favor and get on Clyde's bandwagon of moment-by-moment celebration for life.
In about six weeks we'll get results from a complete examination of Clyde's health that will tell us if her new blood is working against the cancer. I'm already feeling anxious about it. I get the sense that while it's in the back of Clyde's mind, she's just looking forward to tomorrow. Awesome.
Be well.
The blood work shows that all of her counts are steady or rising. The key markers are in the "normal" range. They are continuing to cut back on Prednisone and are happy with how her body and "my" cells are playing together. We're getting to the point when I should stop referring to her blood cells as "mine." (the period is inside the quotation marks, Lance, did I do that right?) At this point she has new bone marrow that is producing new blood cells all the time. Those cells are hers and only hers. It's absolutely amazing if you ask me. Our entire family walks around shaking our heads in disbelief at how fortunate we've been through the process. I can only imagine how Clyde feels.
I do know that she feels well enough to go to work for a couple of hours a few days a week. I'm afraid that people will see her out and think that she's out of the woods and all healed. She's not, yet. When she reported to her doctor that she was feeling head congestion he immediately prescribed antibiotics - strong antibiotics and lots of them. Infections still need to be beaten down swiftly and soundly as no one really knows how strong her immune system is.
Despite a head full of snot, Clyde feels well. I don't know if you know anyone like this, but when I talk to Clyde I can hear her appreciation for health and life in every word. She is a person that is living every moment in the way it should be lived. What a lesson that is for the rest of us. We all gripe about this and that when in fact we should recognize the miracle that is every moment. We should all do ourselves a favor and get on Clyde's bandwagon of moment-by-moment celebration for life.
In about six weeks we'll get results from a complete examination of Clyde's health that will tell us if her new blood is working against the cancer. I'm already feeling anxious about it. I get the sense that while it's in the back of Clyde's mind, she's just looking forward to tomorrow. Awesome.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Saturday, November 21, 2009
Sailing Right Along
Clyde called me yesterday to report on her lab visit. She has been feeling well, going to work for a couple of hours at a time and enjoying her time resting. At her visit to the clinic this week she had a chance to be examined by her transplant doctor, Dr. Longo. She enjoys meeting with him. Clyde tells me that he possesses a calm, confident demeanor that she finds comforting.
Her lab results were what was expected. Her white blood cell count was a bit low as it can be given her current drug mix. The red blood cells and platelets were good. She has been taking a magnesium supplement so that level was good as well. Dr. Longo was very reassuring that everything is progressing as expected.
The rash that Clyde has been experiencing has disappeared. She had been applying a steroidal cream along with her mega-dose of Prednisone. Since the rash is gone it's time to ween off the steroids. This is great news for the people of Wisconsin as it's rumored that the poor play of the Packers is due to the shortage of steroids caused by the size of Clyde's dose.
At the moment that's all there is to report. We're getting closer to the 90 day CAT scan that will tell us how the new bone marrow is doing against Clyde's lymphoma. When Clyde mentioned that to Dr. Longo, his reply was "Yeah, that's gonna be cool." What the hell does he mean by that? We're hearing it as encouraging.
In the meantime, get outside and enjoy this amazing world we live in. It's ski season now.
Be well.
Her lab results were what was expected. Her white blood cell count was a bit low as it can be given her current drug mix. The red blood cells and platelets were good. She has been taking a magnesium supplement so that level was good as well. Dr. Longo was very reassuring that everything is progressing as expected.
The rash that Clyde has been experiencing has disappeared. She had been applying a steroidal cream along with her mega-dose of Prednisone. Since the rash is gone it's time to ween off the steroids. This is great news for the people of Wisconsin as it's rumored that the poor play of the Packers is due to the shortage of steroids caused by the size of Clyde's dose.
At the moment that's all there is to report. We're getting closer to the 90 day CAT scan that will tell us how the new bone marrow is doing against Clyde's lymphoma. When Clyde mentioned that to Dr. Longo, his reply was "Yeah, that's gonna be cool." What the hell does he mean by that? We're hearing it as encouraging.
In the meantime, get outside and enjoy this amazing world we live in. It's ski season now.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Tuesday, November 10, 2009
We're Doing It, We're Doing It...
We're Doing It, We're Doing It...That's what the voice on the other end of the line was saying when I picked up the phone yesterday. It was Clyde and she had just returned from the clinic.
Over the weekend she had developed a rash on her rib cage and torso. It didn't hurt or itch so she didn't give it much thought until it started to get bigger. There was no fever with it but she gave her doctors a call anyway. They asked her to come in on Monday so they could see it and attempt to determine what the cause was. Our Mom, Kay, went with her to the clinic Monday around midday. She got in quickly and the medical team took a look at the rash. After a thorough examination, Dr. Longo, her transplant doctor explained that the condition was a symptom of Graft versus Host Disease.
More specifically, this type of rash and the location of it on Clyde's body indicated that it was a symptom of Graft versus Tumor activity. In his words it's a sign that my "good" cells were attacking her "bad" cells. Read the last two sentences again. The cells transplanted into Clyde from my blood are attacking her cancer! That's the point of the whole procedure. This was the first indication that the desired medical process had in fact begun.
The news took Clyde by surprise to say the least. This is the most positive development in the course of her illness in more than two years. By the time she called me, she was bouncing off the ceiling. After the ups and downs of the last several weeks, Clyde was due for some positive news. This development is as positive as it gets.
I am surprised at the affect the news had on me. When she told me I realized that it was unbelievably good news but it was so huge that it didn't sink in right away. I'm not sure now that it's hit me. It was easy for me to get excited last night when I got home and told Lindsay and the kids but I'm still plagued by my cautious nature on it. We are not in the end-zone yet. We are driving and have wonderful momentum but I want empirical proof that the cancer has been destroyed. We're just not there yet.
I know I'm being a wet blanket. We should celebrate the small successes and good news with wild abandon. I want to feel like something big has been accomplished but for some reason I'm holding out for the declaration of victory. The final gun sounding with "Team Clyde" ahead on the scoreboard.
Please don't let my tempered enthusiasm dampen yours. Our collective, positive energy on this has given Clyde much needed momentum on the road to recovery, remission and cure. Keep up the great thoughts. I truly believe we're winning but understand that the fight is not over. The rash Clyde has now is a warning sign at the same time it's a positive one. The doctors will get the GvHD under control and the recovery will continue but there will still be ups and downs. Keep up the good vibe. I will be patient and let the most recent good news sink in.
"We're doing it, we're doing it....!"
Be well.
Over the weekend she had developed a rash on her rib cage and torso. It didn't hurt or itch so she didn't give it much thought until it started to get bigger. There was no fever with it but she gave her doctors a call anyway. They asked her to come in on Monday so they could see it and attempt to determine what the cause was. Our Mom, Kay, went with her to the clinic Monday around midday. She got in quickly and the medical team took a look at the rash. After a thorough examination, Dr. Longo, her transplant doctor explained that the condition was a symptom of Graft versus Host Disease.
More specifically, this type of rash and the location of it on Clyde's body indicated that it was a symptom of Graft versus Tumor activity. In his words it's a sign that my "good" cells were attacking her "bad" cells. Read the last two sentences again. The cells transplanted into Clyde from my blood are attacking her cancer! That's the point of the whole procedure. This was the first indication that the desired medical process had in fact begun.
The news took Clyde by surprise to say the least. This is the most positive development in the course of her illness in more than two years. By the time she called me, she was bouncing off the ceiling. After the ups and downs of the last several weeks, Clyde was due for some positive news. This development is as positive as it gets.
I am surprised at the affect the news had on me. When she told me I realized that it was unbelievably good news but it was so huge that it didn't sink in right away. I'm not sure now that it's hit me. It was easy for me to get excited last night when I got home and told Lindsay and the kids but I'm still plagued by my cautious nature on it. We are not in the end-zone yet. We are driving and have wonderful momentum but I want empirical proof that the cancer has been destroyed. We're just not there yet.
I know I'm being a wet blanket. We should celebrate the small successes and good news with wild abandon. I want to feel like something big has been accomplished but for some reason I'm holding out for the declaration of victory. The final gun sounding with "Team Clyde" ahead on the scoreboard.
Please don't let my tempered enthusiasm dampen yours. Our collective, positive energy on this has given Clyde much needed momentum on the road to recovery, remission and cure. Keep up the great thoughts. I truly believe we're winning but understand that the fight is not over. The rash Clyde has now is a warning sign at the same time it's a positive one. The doctors will get the GvHD under control and the recovery will continue but there will still be ups and downs. Keep up the good vibe. I will be patient and let the most recent good news sink in.
"We're doing it, we're doing it....!"
Be well.
Labels:
cancer,
cure,
donor,
health,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Saturday, November 7, 2009
And the Bone Marrow Says?.......
Nothing...yet. Results of Clyde's bone marrow biopsy on Thursday won't be back for another week or so. I sat on pins and needles all day Thursday waiting for the results. Clyde called mid-afternoon to report on her clinic visit. Her blood counts are very good. Her white count is well within the normal range and the red counts, including platelets, were slightly below normal but not to the point that she needed a transfusion. Her mineral levels, magnesium, potassium, phosphorous, etc. were all good as well. Her meds were not adjusted at all which is a nice development. It's been the case recently that she's been taking too much of or too little of one drug or another. The immunosuppression drugs have been the tricky ones to dial-in. They've been responsible for the last visits to the hospital - nasty side-effects.
The medical team told Clyde that when the biopsy results come back, they expect to see both her cells and mine active in the marrow. I'm not sure what leads them to believe that but it sounds like good news to me and Clyde. If that is the case, the doctors will start adjusting the immonosuppression drugs to try to help my cells get to work on the cancer. I may be over-simplifying the process a bit here but that's generally the program.
The CAT scan Clyde had in the last couple of weeks showed the presence of some cancer in various places. It didn't appear that anything was getting worse but there wasn't significant progress against it either. Cancer, consideer yourself warned. We're coming for you and it's just a matter of time.
Clyde's spirits are high and she's feeling well. She attended a meeting at her office last Tuesday and is getting out of the house a bit. Her appetite is good and she still has plenty of opportunity for rest. At the moment things are going very well.
A big thanks goes out to all of you that took the time to send Clyde a happy birthday wish on the 3rd. She received a lot of wishes and notes on her Facebook page. She called me that afternoon to check in because she was getting birthday wishes from people she didn't know. My faith in the goodness of people was reinforced by all of you that took the time to prop up a person you'll likely never meet. I'll never be able to thank you enough. You are good people.
I'll let you know when we hear about the biopsy results. In the meantime please keep good thoughts. If you want to send Clyde a message, find her on Facebook. Her name is Rae Ellen Packard.
Be well.
The medical team told Clyde that when the biopsy results come back, they expect to see both her cells and mine active in the marrow. I'm not sure what leads them to believe that but it sounds like good news to me and Clyde. If that is the case, the doctors will start adjusting the immonosuppression drugs to try to help my cells get to work on the cancer. I may be over-simplifying the process a bit here but that's generally the program.
The CAT scan Clyde had in the last couple of weeks showed the presence of some cancer in various places. It didn't appear that anything was getting worse but there wasn't significant progress against it either. Cancer, consideer yourself warned. We're coming for you and it's just a matter of time.
Clyde's spirits are high and she's feeling well. She attended a meeting at her office last Tuesday and is getting out of the house a bit. Her appetite is good and she still has plenty of opportunity for rest. At the moment things are going very well.
A big thanks goes out to all of you that took the time to send Clyde a happy birthday wish on the 3rd. She received a lot of wishes and notes on her Facebook page. She called me that afternoon to check in because she was getting birthday wishes from people she didn't know. My faith in the goodness of people was reinforced by all of you that took the time to prop up a person you'll likely never meet. I'll never be able to thank you enough. You are good people.
I'll let you know when we hear about the biopsy results. In the meantime please keep good thoughts. If you want to send Clyde a message, find her on Facebook. Her name is Rae Ellen Packard.
Be well.
Labels:
cancer,
cure,
donor,
health,
lymphoma,
remission,
t-cell transplant,
t-cells,
transplant,
treatment
Saturday, October 31, 2009
Quick Update
Reports from Madison (Oregon, WI really) inform me that Clyde has settled in at home and is feeling well. She called me herself on Thursday afternoon to fill me in on the action at her lab visit earlier in the day. It was Bee's turn to watch her so he took to the clinic to be analyzed. In Clyde's medical state, someone needs to be with her at all times. As her health can take a serious turn very quickly, her medical team wants someone there to assess her condition and make calls on her behalf should a situation arise. Most of the family has been taking turns sitting with her, watching TV, movies or her sleeping.
At the clninc her blood showed a good presence of white blood cells and a red blood cell count in the "normal" range. This is all good news. They gave her some magnesium, in which she seems to be chronically deficient. They also wanted to give her intravenous phosphorous to help keep her cell walls strong and flexible. I wasn't aware that humans need phosphorous. I told her to go home and eat a couple of sparklers but she seems to think that taking the prescription they gave her was a better idea. Whatever.
Intrigue was added to the situation by the doctors' announcement to Clyde that next week they will perform a bone marrow biopsy. The significant piece of that procedure is that they will be able to see if the t-cell graft is taking. Suddenly we're all looking forward to the test results with a bit more anticipation. The test will take place on Thursday and I'm glad I have a busy week to distract me from my anxiety. With the instability her condition has shown in the last few weeks I'm confident that something big is going on. I can hardly wait to hear that her marrow is showing activity from cells taken from me. This is awesome!
That's the update for now. Please keep a positive vibe going for the marrow biopsy this week. This could be big.
Be well.
At the clninc her blood showed a good presence of white blood cells and a red blood cell count in the "normal" range. This is all good news. They gave her some magnesium, in which she seems to be chronically deficient. They also wanted to give her intravenous phosphorous to help keep her cell walls strong and flexible. I wasn't aware that humans need phosphorous. I told her to go home and eat a couple of sparklers but she seems to think that taking the prescription they gave her was a better idea. Whatever.
Intrigue was added to the situation by the doctors' announcement to Clyde that next week they will perform a bone marrow biopsy. The significant piece of that procedure is that they will be able to see if the t-cell graft is taking. Suddenly we're all looking forward to the test results with a bit more anticipation. The test will take place on Thursday and I'm glad I have a busy week to distract me from my anxiety. With the instability her condition has shown in the last few weeks I'm confident that something big is going on. I can hardly wait to hear that her marrow is showing activity from cells taken from me. This is awesome!
That's the update for now. Please keep a positive vibe going for the marrow biopsy this week. This could be big.
Be well.
Thursday, September 10, 2009
Sit on the Couch, Wrapped in Bubble-wrap
As it turned out, my blood is a perfect match for Clyde's. The requirement is that the donor's blood has to have identical HLA's, whatever they are.
Words cannot explain how big a deal it is to have a match. For Clyde, it's a shot at lasting and complete relief from a condition that has plagued her for more than two decades. I don't know how many people can grasp how long that is. There are kids in college that weren't born when she was diagnosed. George Bush 1 was president at that time. Now, for Clyde, there's a light at the end of the tunnel.
Since we found out that I am the match last Spring, I have been trying to get my head around what it means to me. On one hand there is a tremendous sense of responsibility. I find myself thinking about my own safety more than usual. Clyde wanted me to sit on the couch wrapped in bubble-wrap when we learned of the test results so nothing would happen to me. I am definitely more thoughtful about what I eat. I take vitamins and fish oil daily. I have greatly curtailed my use of intoxicants. When the time comes, I want to be healthy. Clyde's counting on me.
On the other hand, I'm overwhelmingly grateful for this gift. There was nothing done on my part to qualify me for this role, yet I get a chance, a good chance, to give the gift of health to another person, a family member no less. The significance of that is "meaning of life" big. What else have I done or will I do that is bigger and of greater meaning than that? Nothing. A person could be a champion of industry, have made all the money in the world, created the world's most beautiful musice or art and still not have contributed to another's well-being on this level. Sound corny? It might, but until you're in this position, it will be very hard to understand. I know Anita get's it. She's my sister-in-law. She gave a kidney to my brother a few years ago. She earned the right to feel this way. Surgeons took out her body part. She felt pain and fear. In my case, all I have to do is lay there while they take blood from my arm. More or less risk-free. And for that I get a sense of fulfillment from life that few enjoy. It is a wonderful gift.
Apparently, words don't explain my side of the equation either. I don't mean to understate the importance and reward of being a good parent to my kids or husband to my wife Lindsay. Through those efforts I contribute to their health and well-being as well, and that's enormously important. I will work for those rewards for the rest of my life. Still, somehow this is different.
I'm looking forward to the process starting in earnest. In a few weeks we'll be in the thick of it.
Thanks Clyde for the amazing gift you're giving me. I'll do my best to return the favor.
Be well.
Words cannot explain how big a deal it is to have a match. For Clyde, it's a shot at lasting and complete relief from a condition that has plagued her for more than two decades. I don't know how many people can grasp how long that is. There are kids in college that weren't born when she was diagnosed. George Bush 1 was president at that time. Now, for Clyde, there's a light at the end of the tunnel.
Since we found out that I am the match last Spring, I have been trying to get my head around what it means to me. On one hand there is a tremendous sense of responsibility. I find myself thinking about my own safety more than usual. Clyde wanted me to sit on the couch wrapped in bubble-wrap when we learned of the test results so nothing would happen to me. I am definitely more thoughtful about what I eat. I take vitamins and fish oil daily. I have greatly curtailed my use of intoxicants. When the time comes, I want to be healthy. Clyde's counting on me.
On the other hand, I'm overwhelmingly grateful for this gift. There was nothing done on my part to qualify me for this role, yet I get a chance, a good chance, to give the gift of health to another person, a family member no less. The significance of that is "meaning of life" big. What else have I done or will I do that is bigger and of greater meaning than that? Nothing. A person could be a champion of industry, have made all the money in the world, created the world's most beautiful musice or art and still not have contributed to another's well-being on this level. Sound corny? It might, but until you're in this position, it will be very hard to understand. I know Anita get's it. She's my sister-in-law. She gave a kidney to my brother a few years ago. She earned the right to feel this way. Surgeons took out her body part. She felt pain and fear. In my case, all I have to do is lay there while they take blood from my arm. More or less risk-free. And for that I get a sense of fulfillment from life that few enjoy. It is a wonderful gift.
Apparently, words don't explain my side of the equation either. I don't mean to understate the importance and reward of being a good parent to my kids or husband to my wife Lindsay. Through those efforts I contribute to their health and well-being as well, and that's enormously important. I will work for those rewards for the rest of my life. Still, somehow this is different.
I'm looking forward to the process starting in earnest. In a few weeks we'll be in the thick of it.
Thanks Clyde for the amazing gift you're giving me. I'll do my best to return the favor.
Be well.
Monday, September 7, 2009
Treatment to This Point
When Clyde was first diagnosed, her 1st course of treatment included oral chemo. I can't tell you what the drugs were but they appeared to take care of the problem. Over the span of nine months, the lymph nodes where the cancer was collecting reduced in size to the the point that the doctors couldn't detect the disease. The toll on Clyde didn't seem that great either. Granted, I wasn't around much, but I understand that in the course of treatment, she never missed a day of work due to side effects or the illness itself. There was some hair loss and I know there were days that she felt like hell but Clyde is a person of strong will.
The effect that the first chemo had on Clyde's disease lasted for a long time. At her 5 year check-up she was cancer free. The same at 10 years. I think it was 13 years before symptoms returned. We can only imagine how it felt to think you're in the clear only to have the process start over. Again, Clyde's stoic nature hid whatever fear or frustration she was feeling.
In the time that Clyde was in remission, science was making great gains in the treatment of her condition. A new class of drugs called mono-clonal antibodies were developed. These drugs were designed to attach themselves to a protein coating on the cancer cells. They kill the cancer without damaging healthy cells. This all but eliminates the nasty side-effects associated with conventional chemo. Clyde was given a drug called Rituxin. It came in a drip and worked very well and quickly. Again, the cancer was put down and stayed that way for almost 5 years.
After that round, the cancer returned several times and more quickly. There was a round of radiation on one specific spot. Next there was a round of R-CHOP, an acronym for a particular cocktail of drugs. About a year ago Clyde was involved in a clinical trial that nearly killed her. I don't know what she received and I'm not sure anyone else knows either. She wasted away, suffering from the treatment considerably more than from the disease. It was hard to watch. When it was decided that she be taken off the trial and put back on traditional chemo, she felt better. I've never known a person to feel better and gain weight while on chemo but compared to the trial, it seemed easy.
The only downside to going back to a "normal" chemo is that it became evident that it was no longer working very well. Doctors saw improvement in some areas, no improvement in some areas and cancer growing in some areas. Suddenly, Clyde was left with the option of a t-cell transplant for her best hope of the complete remission she had seen earlier in her treatment.
The t-cell transplant option was something we were all aware of. It had been discussed last spring as an alternative. In this scenario, t-cells are "harvested" from a donor by selectively removing them from blood. The procedure is done in two variations. In one, t-cells are harvested from the patient themself and transplanted back. The other process is to take the cells from another person and transplant them. Clyde is getting ready for the latter process.
The best donor for for this type of transplant is a sibling. Each sibling has a 1 in 4 chance of being a good match. Clyde has 4 siblings, there should be a match, right? All four of us went off to the local lab to have blood drawn. When the results were all in, the math had worked in Clyde's favor. She has a match. The transplant could be done should it become the best option.
It's the best option now. In the next several weeks, after all the tests are done, all the hurdles cleared, the transplant will proceed. Bring it on.
Be well.
The effect that the first chemo had on Clyde's disease lasted for a long time. At her 5 year check-up she was cancer free. The same at 10 years. I think it was 13 years before symptoms returned. We can only imagine how it felt to think you're in the clear only to have the process start over. Again, Clyde's stoic nature hid whatever fear or frustration she was feeling.
In the time that Clyde was in remission, science was making great gains in the treatment of her condition. A new class of drugs called mono-clonal antibodies were developed. These drugs were designed to attach themselves to a protein coating on the cancer cells. They kill the cancer without damaging healthy cells. This all but eliminates the nasty side-effects associated with conventional chemo. Clyde was given a drug called Rituxin. It came in a drip and worked very well and quickly. Again, the cancer was put down and stayed that way for almost 5 years.
After that round, the cancer returned several times and more quickly. There was a round of radiation on one specific spot. Next there was a round of R-CHOP, an acronym for a particular cocktail of drugs. About a year ago Clyde was involved in a clinical trial that nearly killed her. I don't know what she received and I'm not sure anyone else knows either. She wasted away, suffering from the treatment considerably more than from the disease. It was hard to watch. When it was decided that she be taken off the trial and put back on traditional chemo, she felt better. I've never known a person to feel better and gain weight while on chemo but compared to the trial, it seemed easy.
The only downside to going back to a "normal" chemo is that it became evident that it was no longer working very well. Doctors saw improvement in some areas, no improvement in some areas and cancer growing in some areas. Suddenly, Clyde was left with the option of a t-cell transplant for her best hope of the complete remission she had seen earlier in her treatment.
The t-cell transplant option was something we were all aware of. It had been discussed last spring as an alternative. In this scenario, t-cells are "harvested" from a donor by selectively removing them from blood. The procedure is done in two variations. In one, t-cells are harvested from the patient themself and transplanted back. The other process is to take the cells from another person and transplant them. Clyde is getting ready for the latter process.
The best donor for for this type of transplant is a sibling. Each sibling has a 1 in 4 chance of being a good match. Clyde has 4 siblings, there should be a match, right? All four of us went off to the local lab to have blood drawn. When the results were all in, the math had worked in Clyde's favor. She has a match. The transplant could be done should it become the best option.
It's the best option now. In the next several weeks, after all the tests are done, all the hurdles cleared, the transplant will proceed. Bring it on.
Be well.
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