Yesterday was a very big day. As many of you know I signed up to participate in the Ride 4 Yellow event in Steamboat Springs, CO. The event was a 25 mile mountain bike ride from the DuMont Lake Trailhead on Rabbit Ears Pass over Mount Werner and down to the top of Steamboat Resort's Gondola. The intent of the function was to raise money for the Lance Armstrong Foundation. Given my experiences with Clyde's cancer over the last few months combined with my affinity for riding bikes, this seemed a natural fit.
The appeal of participating was made event greater when I learned that Lance Armstrong himself would be riding along. That fact alone made the $100 entry fee and the commitment to raise $500 more seem paltry. I have admired Lance for many years, not only for his dominance of pro cycling but also for his unwavering diligence in raising awareness of cancer and the struggles of those afflicted with the disease.
In the weeks and days between enrollment and the actual event I was preoccupied with the possibility of meeting Mr. Armstrong. What would I say? How would I act? What would he say to me as a way of expressing his condolenses for Clyde's loss and in thanks for the money I'd raised? Would I embarrass myself on the ride?
Little did I know that the "experience" of the day would have nothing to do with any of those things.
Thanks to all of you and some who have never and will never see this blog, I was the third highest fundraiser. My total as of Sunday morning was $5,455.00. While in the grand scheme of the fight against cancer that may be a drop in the bucket, to the event organizers and me it is a massive total. Combined the riders, of which there were only 200, raised in the neighborhood of $240,000. If every community in America could do that we'd be talking serious money.
The knowledge that we had, collectively, raised that kind of money created a strong sense of community among the riders, most of whom were complete strangers at the start of the day. A bond was established by the understanding that we were a part of something special. Anyone that has held a fundraising event for the first time knows that generating large sums is next to impossible. We had done it. For me, knowing that my circle of family and friends had lead the pack in honor of Clyde is a source of great pride.
I went to Steamboat thinking that my story, Clyde's story, was very dramatic if not tragic. We were unique in the bond we shared and the loss my family had incurred. The Steamboat Pilot, the local newspaper, and the event organizers thought so as well. Each featured the story in the days before the ride (http://www.steamboatpilot.com/news/2010/aug/06/benefit-dollars-roll-steamboats-ride-4-yellow-even/). When I arrived on the day of the event I learned that nearly every rider participating had a similar story. Someone they knew and loved had been sick or died because of cancer. Several were themsleves cancer survivors. In a strange way this strengthened the sense of community even further. We were all working together to heal, give back and try to prevent others from suffering the same pain we'd all experienced. At the lunch that followed the ride there were close to 500 people, all of whom had experienced cancer in similar ways. This is a powerful realization. It gave a different meaning and purpose to the entire day
In the end, the the power of the day wasn't what I had anticipated. I never spoke to Lance let alone met him. I watched helplessly as he rode away from me in the first 100 yards of the ride and never saw him again. As for the ride, there were a couple of instances where I showed other riders, 10 to 15 years my junior, that a 48 year old guy on a 15 year old bike can still get the job done.
The meaning of the event was to strengthen the resolve of those participating by demonstrating that we have this enemy in common. Sure, Lance puts his name on it which gives the cause credibility but it's us, the riders, the community, that will eventually raise the money and awareness that will result in a cure.
Clyde was diagnosed 22 years before she died. In that time the technology of cancer treatment advanced by leaps and bounds. Each of those developments was driven and funded, at least in part, by people like you and me that have lost loved ones to the diseases we call cancer. The Livestrong message, if I understand it, is that we all need to take responsibility for getting to the cures.
Thanks again for you donating to this cause. It's impact is universal.
Be well.
Monday, August 9, 2010
Wednesday, July 7, 2010
Gaining Clarity, Feeling Better, Doing Something
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.
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.
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.
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