My "arrival" date for CAR-T therapy has been set for December 1st.
I will begin by meeting with the full team of doctors, nurses, PA's, nutritionist, pharmacist and social worker who will be responsible for their part of my care during the course of the clinical trial and treatment. By mid-December I will undergo "leukaphoresis," a process that separates my T cells from my blood, which will then be shipped to a lab to be made into CARs (chimeric antigen receptors). Once these modified CAR-T cells return approximately 3 weeks later, they will be reinfused into my body, at which point I will be hospitalized.
It suddenly feels a bit daunting.
After all, I don't look sick, act sick, or sound sick.
I have to keep reminding myself that I have a possible ticking time bomb next to my trachea that could explode at any moment, sending tendrils of cancer all over my body. It may have happened already and I just don't know it yet.
And THAT's the reason I am undergoing this treatment.
I also have to remind myself that this teeny tiny tumor has not responded well to traditional treatments, even though chemotherapy and radiation did put me into complete remission for 20 months. But after cancer's recurrence this summer and subsequent failed Immunotherapy, CAR-T is my next best option.
Oh, yeah, I convince myself: THAT's the reason I am undergoing this treatment.
But, still...it seems like overkill for a 1.6cm tumor when I feel the best I have felt since before Immunotherapy started in July. I have no symptoms of cancer--no pain, no sleepless nights, no fatigue. I have nothing that would suggest that cancer is hanging out squarely by my throat, contemplating its next move.
Can't we just wait and see what its plans are before we do a complicated treatment that may leave me with long-lasting symptoms or the need for more procedures?
I have said from the beginning of this story, back in 2018, that I do not resonate with being a "sick" person. Nothing in me identifies with having cancer. It all seems like a grand hoax, a surreal dream. It hardly has felt real, even while I was hooked up to poisonous chemotherapy that dripped into my body every 21 days.
But for the first time since cancer entered center stage 2.5 years ago, the mention of this new therapy on October 28th grabbed me by the throat a month ago, sending me into a tailspin of doom. I was sure it was going to be my demise. I cried for 3 days straight, unable to bear the thought that I would be breaking my children's hearts and leaving the planet long before I'd planned to.
I often woke in the wee hours of the morning, a sudden panic taking over. Then my mind got involved, conjuring up worst-case-scenarios:
Will I survive this treatment?
Will I have long-lasting or debilitating side effects?
Will I see my family again?
Will this offer a long-term remission?
Elizabeth Gilbert calls this "Horizontal thinking" and it always results in heightened anxiety. Her remedy is to plant one's feet on the floor where reality can be found. But at 3 in the morning, I didn't--and still don't--like that choice.
So instead, I prayed, often through tears and bargaining: Please, oh please, let me live.
I would then recite a list of blessings to be grateful for in my own little effort to invite reality in. I have had so much support and have been guided through so many seemingly "tragic" events in my 57 years.
Why not one more?
But still, I wonder.
I was updating documents for my Will at this computer when I decided to write a list of songs to play at my "someday" Memorial. I've been gathering documents and files since cancer knocked on the doorstep of my life, uninvited.
Because you just never know when "things" may happen, and I want to be prepared so that my three children do not have to bear the burden of figuring out how to both grieve the loss of their mother and stop the details of her life. I have left step-by-step instructions about how to delete accounts, collect inheritances, and disperse my belongings.
It has been no easy task. It has taken great fortitude and so many tears to attempt to lessen the load for those I may leave behind. Excruciating is an understatement.
I signed into Youtube and started listening to old and new favorites. I eventually had to stop because I was sobbing so hard I couldn't catch my breath.
Facing my own mortality has been next to impossible.
I'm not ready for the possibility that this go-round with cancer may take me. And I don't want to do this treatment. I'd rather just forget about this 1.6 cm piece of cancer and return to work.
**************************************************
It's been a month since I received the news of this treatment and after weeks, days, and hours of contemplation and tears, do I really believe that I won't be coming home from this?
No, I do not. Taking this time to consider my options has allowed me to come to grips with the enormity of what's ahead, and with a lot of research and reaching out to those who have already gone through CAR-T, I have also gained invaluable insight. My upcoming treatment has, little-by-little, started to shrink in its intensity.
So has my fear. It no longer feels enormous, but manageable.
I actually have a lot of peace around this next step, even though I still remain skeptical: is this the correct treatment for me, right now? I know I can't live in both spaces--peace and skepticism--so most of the time I move forward with the treatment plan despite nigglings of doubt in the back of my brain.
But this is my reality: I am both skeptical and I am at peace.
It is faith that has beckoned me forward despite my internal conflict, which led me to ask the question in the Facebook group of those who have experienced CAR-T. Forty-four people chimed in, offering words of encouragement and details of their own stories. It wasn't until a certain explanation was posted that I finally got my "Aha!" moment. No one has been able to adequately explain why CAR-T is the best option for me, despite my tumor's small size.
Besides the fact that my cancer continues to return even after annihilating it with harsh drugs and many rounds of radiation, these treatments are also known to "shoot without a target" so small/microscopic cancerous cells, which go undetected on scans and biopsies, remain and grow back.
"It's like an army battalion shooting everywhere (chemo) versus highly trained snipers (CAR-T) that have a great attack plan." My re-engineered T cells will attack and destroy all cells with cancer anywhere in my body, and will continue to do this for quite some time.
This explanation cinched it for me. It now makes sense. I have understood all along that my aggressive cancer needs an aggressive counter-attack, but I have been stuck on the fact that my battleground covers little territory (1.6cm), so why is such a complicated and harsh therapy needed?
Now I get it: One lone node like mine still has the agility to evade treatments that "shoot everywhere," so it needs a sniper with pinpoint accuracy to do the job.
My skepticism, aided by my peace and a well-written explanation, has finally led to acceptance.
It's time to roll...
I will begin by meeting with the full team of doctors, nurses, PA's, nutritionist, pharmacist and social worker who will be responsible for their part of my care during the course of the clinical trial and treatment. By mid-December I will undergo "leukaphoresis," a process that separates my T cells from my blood, which will then be shipped to a lab to be made into CARs (chimeric antigen receptors). Once these modified CAR-T cells return approximately 3 weeks later, they will be reinfused into my body, at which point I will be hospitalized.
It suddenly feels a bit daunting.
After all, I don't look sick, act sick, or sound sick.
I have to keep reminding myself that I have a possible ticking time bomb next to my trachea that could explode at any moment, sending tendrils of cancer all over my body. It may have happened already and I just don't know it yet.
And THAT's the reason I am undergoing this treatment.
I also have to remind myself that this teeny tiny tumor has not responded well to traditional treatments, even though chemotherapy and radiation did put me into complete remission for 20 months. But after cancer's recurrence this summer and subsequent failed Immunotherapy, CAR-T is my next best option.
Oh, yeah, I convince myself: THAT's the reason I am undergoing this treatment.
But, still...it seems like overkill for a 1.6cm tumor when I feel the best I have felt since before Immunotherapy started in July. I have no symptoms of cancer--no pain, no sleepless nights, no fatigue. I have nothing that would suggest that cancer is hanging out squarely by my throat, contemplating its next move.
Can't we just wait and see what its plans are before we do a complicated treatment that may leave me with long-lasting symptoms or the need for more procedures?
I have said from the beginning of this story, back in 2018, that I do not resonate with being a "sick" person. Nothing in me identifies with having cancer. It all seems like a grand hoax, a surreal dream. It hardly has felt real, even while I was hooked up to poisonous chemotherapy that dripped into my body every 21 days.
But for the first time since cancer entered center stage 2.5 years ago, the mention of this new therapy on October 28th grabbed me by the throat a month ago, sending me into a tailspin of doom. I was sure it was going to be my demise. I cried for 3 days straight, unable to bear the thought that I would be breaking my children's hearts and leaving the planet long before I'd planned to.
I often woke in the wee hours of the morning, a sudden panic taking over. Then my mind got involved, conjuring up worst-case-scenarios:
Will I survive this treatment?
Will I have long-lasting or debilitating side effects?
Will I see my family again?
Will this offer a long-term remission?
Elizabeth Gilbert calls this "Horizontal thinking" and it always results in heightened anxiety. Her remedy is to plant one's feet on the floor where reality can be found. But at 3 in the morning, I didn't--and still don't--like that choice.
So instead, I prayed, often through tears and bargaining: Please, oh please, let me live.
I would then recite a list of blessings to be grateful for in my own little effort to invite reality in. I have had so much support and have been guided through so many seemingly "tragic" events in my 57 years.
Why not one more?
But still, I wonder.
I was updating documents for my Will at this computer when I decided to write a list of songs to play at my "someday" Memorial. I've been gathering documents and files since cancer knocked on the doorstep of my life, uninvited.
Because you just never know when "things" may happen, and I want to be prepared so that my three children do not have to bear the burden of figuring out how to both grieve the loss of their mother and stop the details of her life. I have left step-by-step instructions about how to delete accounts, collect inheritances, and disperse my belongings.
It has been no easy task. It has taken great fortitude and so many tears to attempt to lessen the load for those I may leave behind. Excruciating is an understatement.
I signed into Youtube and started listening to old and new favorites. I eventually had to stop because I was sobbing so hard I couldn't catch my breath.
Facing my own mortality has been next to impossible.
I'm not ready for the possibility that this go-round with cancer may take me. And I don't want to do this treatment. I'd rather just forget about this 1.6 cm piece of cancer and return to work.
**************************************************
It's been a month since I received the news of this treatment and after weeks, days, and hours of contemplation and tears, do I really believe that I won't be coming home from this?
No, I do not. Taking this time to consider my options has allowed me to come to grips with the enormity of what's ahead, and with a lot of research and reaching out to those who have already gone through CAR-T, I have also gained invaluable insight. My upcoming treatment has, little-by-little, started to shrink in its intensity.
So has my fear. It no longer feels enormous, but manageable.
I actually have a lot of peace around this next step, even though I still remain skeptical: is this the correct treatment for me, right now? I know I can't live in both spaces--peace and skepticism--so most of the time I move forward with the treatment plan despite nigglings of doubt in the back of my brain.
But this is my reality: I am both skeptical and I am at peace.
It is faith that has beckoned me forward despite my internal conflict, which led me to ask the question in the Facebook group of those who have experienced CAR-T. Forty-four people chimed in, offering words of encouragement and details of their own stories. It wasn't until a certain explanation was posted that I finally got my "Aha!" moment. No one has been able to adequately explain why CAR-T is the best option for me, despite my tumor's small size.
Besides the fact that my cancer continues to return even after annihilating it with harsh drugs and many rounds of radiation, these treatments are also known to "shoot without a target" so small/microscopic cancerous cells, which go undetected on scans and biopsies, remain and grow back.
"It's like an army battalion shooting everywhere (chemo) versus highly trained snipers (CAR-T) that have a great attack plan." My re-engineered T cells will attack and destroy all cells with cancer anywhere in my body, and will continue to do this for quite some time.
This explanation cinched it for me. It now makes sense. I have understood all along that my aggressive cancer needs an aggressive counter-attack, but I have been stuck on the fact that my battleground covers little territory (1.6cm), so why is such a complicated and harsh therapy needed?
Now I get it: One lone node like mine still has the agility to evade treatments that "shoot everywhere," so it needs a sniper with pinpoint accuracy to do the job.
My skepticism, aided by my peace and a well-written explanation, has finally led to acceptance.
It's time to roll...
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