Journal entry by brooke white —
Finding time to update still proves to be difficult and in the meantime I've been doing some thinking and wanted to share.
First off, it's not like the movies. People often come to the Chemo infusion room alone. Brave souls with the look of routines made through cancer. David is usually the youngest person there. To look around the room is to see courage, its hard to see the illness were it not for the sounds of machines pumping different chemical into the bodies of different people. David has visitors most of the time, and while there is a limit to two people per patient, much of the time is watching him sleep or wheel the IV stand to the many bathrooms trips he takes.
The Room is on the most amazing floor. It is at the very top of the medical building, situated like an infusion penthouse. The 360 degree views of the growing city allow for the awesome sights of weather rolling in and out of the Front Range. The nurses have become familiar and know David's story, family and friends. They are familiar with his flirting and his never ending optimism and the Captain sense of humor. Only once has he cried in that room, I think out of anxiety about the reality of his surroundings, more of a weeping of disbelief and the sorrow of this new normal we have been struggling through. So, yeah, it is not like the movies. Many have commented on his appearance and his retention of that amazing head of hair. Spend anytime in an Infusion Room and it becomes clear that every cancer has it's own personality and so does the treatment. I've yet to witness any horrific vomiting or actual scenes of extreme in this room. These people are brave, stoic and catching up on their favorite books or binge watching tv between naps. I've learned the real effects come in the moments and days after treatment when new symptoms arise, a cumulative array of surprising ailments. Some come and go and other become normal and expected. After his first treatment he had a hard time walking for days, a problem that has yet to occur again. The neuropathy lingers for 5-7 days after I remove the pump and his appetite goes away. We always are adjusting to the are normal.
There has been so much learning, learning about this disease, the treatments, the effects and each other. The new vocabulary becomes conversational dinner talk, becomes a checklist of medicines, chemo, doctors and side effects. Hard to imagine, but it becomes a way of life and all planning is around this selfish entity that deprives us of spontaneity.
David being the outgoing social creature, finds the days following the 3 hour infusion and the 46 hours of pumping chemo, boring. His heart pushes him to get in his car to meet you all, but his body over run with poison, forces him into the horizontal for days at time. Sleep alludes him at night so days are used to piece together bits of rest and time to for healing. I wonder what keeps him awake at night, because for me it is so incomprehensible to imagine living with the uncertainty of the cancer. We talk about it. Not all the time, because we still are the people we were with day to day lives. But, I think the tone has changed and we know we are partners in crime more so now than ever.
I've stopped answering the question "how are you"? It happened suddenly. And with each time its asked I am taken aback because I cannot begin to carve out that answer. So, with no sufficient answer to give that would sum up the nightmare of the situation, I simply say "I don't answer that question anymore". Ask me how David is and be prepared to get full rundown of the latest symptom or Dr apptiontment, round of golf or where he wants to go next. My head is full of him and the adventures we have yet to come. David on the other hand will tell you everything. He is an open book about what the logistics of this is. He loves your call, texts, and facetimes. He loves you all.
For awhile, in the early days of this news there was shock, sadness, denial and bargaining for different versions of this story other than the one we had been given. There was a time when the sadness wouldn't come and the anger was all consuming I thought the anger was permanently anchored in my heart, that I would be broken and I wouldn't feel anything else again. That the anger would reside and smother joy, sadness, and the wonder out of life for all times. That this would break us. As it turns out, we've not broken. Many friends and our social worker have pointed out that grief, even anticipatory grief, is not a single destination. Grief begets grief and old pains will resurface to layer upon the new. The palliative care team has been amazing and given any opportunity to talk to them we do. We talk as family, as partners and individually. We would be lost with out them guiding us. You too have been amazing in your support of this journey and a welcome relief from that cycle.
Its my privilege to be on the road with Davis. There is no other place I would rather be than here with him and wherever our adventures take us next. He has gone to war with me and stood by me in unimaginable times, often with a smile. Times like these show us who and what is important and you've made us feel so very loved. We are humbled and in love with every single one of you who have reached out, showed up and moved in down the street (Looking you Beau and Wendi). The fundraisers have been filled with all the love and it is with wonder we ask how we got so lucky.
The July 1st PET SCAN date which we have been waiting for not so patiently for months is finally here! We get the results Tuesday and back to Chemo Wednesday. We hope you have an amazing holiday and we will check back soon.
With all our love
Lisa
First off, it's not like the movies. People often come to the Chemo infusion room alone. Brave souls with the look of routines made through cancer. David is usually the youngest person there. To look around the room is to see courage, its hard to see the illness were it not for the sounds of machines pumping different chemical into the bodies of different people. David has visitors most of the time, and while there is a limit to two people per patient, much of the time is watching him sleep or wheel the IV stand to the many bathrooms trips he takes.
The Room is on the most amazing floor. It is at the very top of the medical building, situated like an infusion penthouse. The 360 degree views of the growing city allow for the awesome sights of weather rolling in and out of the Front Range. The nurses have become familiar and know David's story, family and friends. They are familiar with his flirting and his never ending optimism and the Captain sense of humor. Only once has he cried in that room, I think out of anxiety about the reality of his surroundings, more of a weeping of disbelief and the sorrow of this new normal we have been struggling through. So, yeah, it is not like the movies. Many have commented on his appearance and his retention of that amazing head of hair. Spend anytime in an Infusion Room and it becomes clear that every cancer has it's own personality and so does the treatment. I've yet to witness any horrific vomiting or actual scenes of extreme in this room. These people are brave, stoic and catching up on their favorite books or binge watching tv between naps. I've learned the real effects come in the moments and days after treatment when new symptoms arise, a cumulative array of surprising ailments. Some come and go and other become normal and expected. After his first treatment he had a hard time walking for days, a problem that has yet to occur again. The neuropathy lingers for 5-7 days after I remove the pump and his appetite goes away. We always are adjusting to the are normal.
There has been so much learning, learning about this disease, the treatments, the effects and each other. The new vocabulary becomes conversational dinner talk, becomes a checklist of medicines, chemo, doctors and side effects. Hard to imagine, but it becomes a way of life and all planning is around this selfish entity that deprives us of spontaneity.
David being the outgoing social creature, finds the days following the 3 hour infusion and the 46 hours of pumping chemo, boring. His heart pushes him to get in his car to meet you all, but his body over run with poison, forces him into the horizontal for days at time. Sleep alludes him at night so days are used to piece together bits of rest and time to for healing. I wonder what keeps him awake at night, because for me it is so incomprehensible to imagine living with the uncertainty of the cancer. We talk about it. Not all the time, because we still are the people we were with day to day lives. But, I think the tone has changed and we know we are partners in crime more so now than ever.
I've stopped answering the question "how are you"? It happened suddenly. And with each time its asked I am taken aback because I cannot begin to carve out that answer. So, with no sufficient answer to give that would sum up the nightmare of the situation, I simply say "I don't answer that question anymore". Ask me how David is and be prepared to get full rundown of the latest symptom or Dr apptiontment, round of golf or where he wants to go next. My head is full of him and the adventures we have yet to come. David on the other hand will tell you everything. He is an open book about what the logistics of this is. He loves your call, texts, and facetimes. He loves you all.
For awhile, in the early days of this news there was shock, sadness, denial and bargaining for different versions of this story other than the one we had been given. There was a time when the sadness wouldn't come and the anger was all consuming I thought the anger was permanently anchored in my heart, that I would be broken and I wouldn't feel anything else again. That the anger would reside and smother joy, sadness, and the wonder out of life for all times. That this would break us. As it turns out, we've not broken. Many friends and our social worker have pointed out that grief, even anticipatory grief, is not a single destination. Grief begets grief and old pains will resurface to layer upon the new. The palliative care team has been amazing and given any opportunity to talk to them we do. We talk as family, as partners and individually. We would be lost with out them guiding us. You too have been amazing in your support of this journey and a welcome relief from that cycle.
Its my privilege to be on the road with Davis. There is no other place I would rather be than here with him and wherever our adventures take us next. He has gone to war with me and stood by me in unimaginable times, often with a smile. Times like these show us who and what is important and you've made us feel so very loved. We are humbled and in love with every single one of you who have reached out, showed up and moved in down the street (Looking you Beau and Wendi). The fundraisers have been filled with all the love and it is with wonder we ask how we got so lucky.
The July 1st PET SCAN date which we have been waiting for not so patiently for months is finally here! We get the results Tuesday and back to Chemo Wednesday. We hope you have an amazing holiday and we will check back soon.
With all our love
Lisa
Patients and caregivers love hearing from you; add a comment to show your support.
Help David Stay Connected to Family and Friends
A $25 donation to CaringBridge powers a site like David's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?
