If you've ever had a new car, you're aware of the phenomenon. Everywhere you look someone else is driving the same car you just bought. After you've had a child, everyone has a baby with them. This is a psychological process that has a name that I cannot recall. It's natural.
I'm going through a similar condition right now as I work through the loss of Clyde. It seems that there's a stage in a persons' grief process where everywhere you look, every song you here, something reminds you of the person you lost. I remember when a friend of mine lost his Mother to cancer. Nearly every conversation you had with him included a reference to his Mom. We noticed it as it happened but knew it was a part of his grief so we never said anything.
And so it is with me. I try not to verbalize each instance of this but it comes to mind many times a day. There's the car Clyde drove, here's a show she thought was funny, there's something on the menu Clyde would have ordered. I suppose it's one way in which her spirit lives on in us all.
Having talked to family in Madison recently, I understand that we're all finding our own way of working through this painful period. We have found outlets for remembering Clyde and filtering out the painful thinking while preserving the fond, loving memories.
In an attempt to turn my sorrow into action, I have decided to try to raise money and awareness for cancer patients and research. My first vehicle for this will be a combination of two things I now hold dearly. I will raise money by participating in a fundraising bike ride with the Lance Armstrong Foundation in Steamboat Colorado. The ride, August 8, will be short and social in nature but will provide me an opportunity to do something positive.
I'm going to ask you to participate with me by donating some money in Clyde's memory. Take a minute to visit my fundraising website at:
http://fundraising.livestrong.org/grassroots2010/mysisterclyde
The organization asks that I raise $500 for the cause. If I don't raise five times that amount I'll be very disappointed. I'm confident that you can contribute. I also know that donating 10%-20% more than you might have planned, when combined with the donations of others, will add up to a sizable contribution. Trust me, in the fight against cancer and in support of those that suffer from it, taking action can be very gratifying. I know this will help you feel great.
Thanks for taking the time to check this out. I'll let you know how the ride goes.
Be well.
Wednesday, July 7, 2010
Monday, June 28, 2010
A Part of the Human Condition
Since the beginning of humanity, every single person that has ever lived on this earth has suffered the loss of a loved one. Not some of us. Not most of us. Every person that has ever and will ever live has this in common. Maybe it was a member of your clan, your tribe, your family, a son or daughter, sibling, spouse, aunt, or whatever. Each one of us must suffer through the excruciating process of adjusting to life without someone dear.
As universal as the phenomenom is, as frequently and universally as it occurs it remains one of the most profound experiences of our existence. One cannot grasp the enormity of it all until they too have had direct contact with it.
As common as the loss of a loved one is, no two people share the exact same experience. In the case of Clyde's death, all of us that were close to her and those that knew about her but weren't close, live a loss unique to them. The sorrow my parents feel is different than the one Clyde's husband Tom is left to bear. Each of Clyde's siblings have their own vantage point from which to view this new reality. And the list goes on for everyone that knew and interacted with her.
It's been my experience that the uniqueness of my relationship with Clyde has made it even harder to bear the weight of losing her. It was me that was given the gift, the opportunity, the responsibility of being the donor of the t-cells that we all hoped would provide the recovery we dreamed about. When she passed, she had me in her on a cellular level. That is a special relationship to have with a person.
It may sound selfish but it is completely honest to say that Clyde's death was the end of a hope and dream for me. When the transplant was evolving in it's process I dreamed of a legacy in which I would be forever remembered as the one that gave Clyde her health back. It was a dream of hero status, the kind of thing that ticker-tape parades are made of. Instead, I will forever live with the phrase "you did your best but..." in the back of my mind.
Don't get me wrong. Having been able to provide hope for Clyde through cell donation is one of the high points of my life. I would do it again without hesitation. There are scant few actions one can take in an attempt to give a cancer patient their health back. That was one and I'd have done more if I could have. Still, with the transplant came a dream of having my existence on this planet validated as worthwhile and special. I hope it's not hard to imagine how that could happen. In the end it just wasn't to be. My dream of that dies with Clyde.
I've noticed that fewer readers are visiting this blog since Clyde's passing. It's my hope that those that do will find comfort in the lessons we're learning through this difficult time. I'm not done here. There is more to learn and share about this rich yet sad experience.
Be well.
As universal as the phenomenom is, as frequently and universally as it occurs it remains one of the most profound experiences of our existence. One cannot grasp the enormity of it all until they too have had direct contact with it.
As common as the loss of a loved one is, no two people share the exact same experience. In the case of Clyde's death, all of us that were close to her and those that knew about her but weren't close, live a loss unique to them. The sorrow my parents feel is different than the one Clyde's husband Tom is left to bear. Each of Clyde's siblings have their own vantage point from which to view this new reality. And the list goes on for everyone that knew and interacted with her.
It's been my experience that the uniqueness of my relationship with Clyde has made it even harder to bear the weight of losing her. It was me that was given the gift, the opportunity, the responsibility of being the donor of the t-cells that we all hoped would provide the recovery we dreamed about. When she passed, she had me in her on a cellular level. That is a special relationship to have with a person.
It may sound selfish but it is completely honest to say that Clyde's death was the end of a hope and dream for me. When the transplant was evolving in it's process I dreamed of a legacy in which I would be forever remembered as the one that gave Clyde her health back. It was a dream of hero status, the kind of thing that ticker-tape parades are made of. Instead, I will forever live with the phrase "you did your best but..." in the back of my mind.
Don't get me wrong. Having been able to provide hope for Clyde through cell donation is one of the high points of my life. I would do it again without hesitation. There are scant few actions one can take in an attempt to give a cancer patient their health back. That was one and I'd have done more if I could have. Still, with the transplant came a dream of having my existence on this planet validated as worthwhile and special. I hope it's not hard to imagine how that could happen. In the end it just wasn't to be. My dream of that dies with Clyde.
I've noticed that fewer readers are visiting this blog since Clyde's passing. It's my hope that those that do will find comfort in the lessons we're learning through this difficult time. I'm not done here. There is more to learn and share about this rich yet sad experience.
Be well.
Friday, June 11, 2010
Before Healing, Grief
I have started this post a thousand times. I wasn't able to finish it because I either dissolved into tears or feared that you would see through my need to be profound in this time of great pain. Either way, the post has gone unwritten for four weeks since Clyde passed away.
I still can't believe that's what's happened. Three months after the transplant, we all thought we had cancer beaten. Clyde was feeling great. There were no obvious signs of the disease. By all signs, the transplant had been a resounding success.
What wasn't apparent was that the enemy in our fight had changed forms. A rare occurrence in the fight against leukemia and lymphoma is a phenomenon called the Richter's transformation ( it occurs in about 8% of cases). This is when the disease literally changes form. In Clyde's case, the lymphoma changed from an indolent, slow growing, chronic form into one that was extremely virolent and aggresive. It attacked her spleen and liver and rendered her without energy and unable to combat the onslaught.
In the end, the fight was lost in two months. Twenty-two years of battle coming down to a change at a cellular level that proved too much, even for a warrior as tough and determined as Clyde.
As the cancer collected in Clyde's liver and spleen it was a source of great pain. The respective organs reside on the left and right of your stomach. The swelling of the organs made it almost impossible for Clyde to put anything into her stomach. The absence of nutrition contributed to her decreasing strength and energy. In the last several weeks she was very sick every day.
After having seen signs of a return to health it was very difficult to witness the decline. The major symptom that we all attached ourselves to was her red blood cell count. The report from each check-up was that of a declining RBC. On the days of the appointments we all waited for news of a turn-around. We belived that if her body would produce more red blood cells she would be alright. Unbenownst to us was that the lymphoma, in it's new, virolent form, was preventing her new marrow from doing it's job. We were losing her.
It's difficult to know the difference between hoping for a medical miracle and denial. The writing was on the wall yet we all waited for the clinic visit that would produce news of an unexplainable turn-around in her condition. For me, this lasted until the morning that Bob called me to say she had passed away.
It's been four weeks to the day. The pain of Cyde's passing ebbs and flows. I can go days where my thoughts focus on the gifts she gave me and the joys that comprised her life. Other days I can't work or focus. My siblings and parents are experiencing the same ups and downs. How can it be that Clyde is no longer here.
In the days and weeks to come it's my plan to lay out the thoughts and feelings that have dominated my existence in the last month. I know that there was meaning to the whole experience. It's my intense desire that there were lessons that will benefit those still living with lymphoma. I have a need to find the words that show my gratitude for the support you all have expressed. Thanks need to given to everyone that did all that was possible and available towards Clyde's treatment and recovery.
It would make sense that when the subject of a narrative dies that the story ends. The reality is that what we're going to get from Clyde in the physical realm has been defined. What we get from her in the mental, emotional and spiritual sense has only begun to play out. Please continue to read and help me understand the lessons and gifts with which Clyde has left us.
I'm going to have a good cry now.
Be well.
I still can't believe that's what's happened. Three months after the transplant, we all thought we had cancer beaten. Clyde was feeling great. There were no obvious signs of the disease. By all signs, the transplant had been a resounding success.
What wasn't apparent was that the enemy in our fight had changed forms. A rare occurrence in the fight against leukemia and lymphoma is a phenomenon called the Richter's transformation ( it occurs in about 8% of cases). This is when the disease literally changes form. In Clyde's case, the lymphoma changed from an indolent, slow growing, chronic form into one that was extremely virolent and aggresive. It attacked her spleen and liver and rendered her without energy and unable to combat the onslaught.
In the end, the fight was lost in two months. Twenty-two years of battle coming down to a change at a cellular level that proved too much, even for a warrior as tough and determined as Clyde.
As the cancer collected in Clyde's liver and spleen it was a source of great pain. The respective organs reside on the left and right of your stomach. The swelling of the organs made it almost impossible for Clyde to put anything into her stomach. The absence of nutrition contributed to her decreasing strength and energy. In the last several weeks she was very sick every day.
After having seen signs of a return to health it was very difficult to witness the decline. The major symptom that we all attached ourselves to was her red blood cell count. The report from each check-up was that of a declining RBC. On the days of the appointments we all waited for news of a turn-around. We belived that if her body would produce more red blood cells she would be alright. Unbenownst to us was that the lymphoma, in it's new, virolent form, was preventing her new marrow from doing it's job. We were losing her.
It's difficult to know the difference between hoping for a medical miracle and denial. The writing was on the wall yet we all waited for the clinic visit that would produce news of an unexplainable turn-around in her condition. For me, this lasted until the morning that Bob called me to say she had passed away.
It's been four weeks to the day. The pain of Cyde's passing ebbs and flows. I can go days where my thoughts focus on the gifts she gave me and the joys that comprised her life. Other days I can't work or focus. My siblings and parents are experiencing the same ups and downs. How can it be that Clyde is no longer here.
In the days and weeks to come it's my plan to lay out the thoughts and feelings that have dominated my existence in the last month. I know that there was meaning to the whole experience. It's my intense desire that there were lessons that will benefit those still living with lymphoma. I have a need to find the words that show my gratitude for the support you all have expressed. Thanks need to given to everyone that did all that was possible and available towards Clyde's treatment and recovery.
It would make sense that when the subject of a narrative dies that the story ends. The reality is that what we're going to get from Clyde in the physical realm has been defined. What we get from her in the mental, emotional and spiritual sense has only begun to play out. Please continue to read and help me understand the lessons and gifts with which Clyde has left us.
I'm going to have a good cry now.
Be well.
Friday, May 14, 2010
Rae Ellen Packard November 3, 1960 - May 14, 2010
Rae Ellen, my sister Clyde, passed away this morning from complications of the lymphoma she has suffered from and survived for the last 22 years. While our hearts are heavy with the loss, we are comforted knowing that she no longer suffers. We will continue to be inspired by the strength and determination she displayed in the face of her disease.
We all appreciate the love and support our community of friends and family have shown throughout this truly amazing journey. I promise to share the details of the last six weeks as soon as my heart and mind settle into the reality of Clyde's passing.
Be well.
We all appreciate the love and support our community of friends and family have shown throughout this truly amazing journey. I promise to share the details of the last six weeks as soon as my heart and mind settle into the reality of Clyde's passing.
Be well.
Monday, April 19, 2010
"We need to get back out in front of the disease."
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.
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.
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.
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.
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