Friday, July 07, 2006
What a year this last year has been
What a year this last year has been. What a journey. I was talking to my sister today (for hours!!) and we were talking about how a year ago we were on a cruise to Alaska. My mother had generously treated the whole family to an Alaskan cruise the week of the 4th of July. And that was my recovery week. It was just a year ago when I returned to work after my pulmonary embolism – when I nearly died – and yet that seems so long ago. Can it truly be just a year?? That was a whole brain tumor ago, and 2 craniotomies. How can it be? I remember how after her biopsy and we were talking about blood brain barrier resistance chemotherapy only to then learn it was not a tumor that would respond to chemo. But how amazingly well she did after her last craniotomy, and how much better she is now. In many ways she is healthier than she has been in years. How can it all be? And how can it be that Alice turns 13 in less than 2 weeks. Who ever thought we’d get this far.
I was reading through a web site of a wonderful family going through the battle of cancer with their adorable daughter and I was so struck with a barrage of memories and thoughts that I needed to write. The web site tells the story of the first time she developed a fever from chemo and needed antibiotics and hospitalization, and transfusion, and I was brought back in time. They also tell a story about how her family has watched American Idol and how they loved Chris Daughtry (one of the idol finalists – who has a shaved head) and how Chris called their daughter on her birthday. I remembered how we watched American Idol (the first season) when Alice was recovering from her second brain tumor, and how we met Kelly Clarkson thanks to the Make-A-Wish organization.
I am reading their web entries and am so struck by the similarities (and differences) of the experiences, and by the amazing perseverance of the human spirit. I am so overcome with emotion and memories which flood my senses. How far we have come. What a journey we have had. What a difference a tumor (or 4) can make. What an amazing world we live in where people can come to together in love and support and show compassion and kindness.
Many of you may know that over the course of the last 7 years since we began treatment on Alice’s original tumor on May 13th of 1999, I have written. Originally I e-mailed a small group of family and friends to keep them updated. In reality, I wrote for me. I wrote because writing was a way for me to get it out, to cope, to make things which seemed so unreal, more palatable; to get feelings out in the open so the burden was not just my own. I always have said it was my way to get my thoughts (and fears) out into the universe and release them. As time went on and chemotherapy continued, and then more tumors came, I kept writing. My e-mail list grew and people forwarded my messages on to others and most recently, we started the blog site. What has happened as a result is that I have volumes of writing, volumes of thoughts and feelings which have been put into words. And today, reading this other family’s experiences, I am so moved by all they are experiencing. I am so amazed by where my family has been.
Numbers come to mind. 70 weeks of chemo with her original tumor, 79 transfusions with the third tumor (and second round of chemo), 4 tumors, 3 distinct tumor types, 7 years. 3 brain surgeries, 2 episodes of complete baldness, 1 bone marrow biopsy, 4 hospitalizations for no white cells and fever. And through it all, one port (which has lasted 7 years). How many MRI’s? At least 6 a year for the last 7 years, plus a half a dozen CT scans. And how many needle pokes??? Way too many to count. And how much vomiting … oh the vomit stories we can tell.
Actually so many stories come to mind; some difficult, some amazing. I am reminded for some reason of the day I dragged Alice out of the house kicking and screaming to take her to a chemo treatment in Portland. She was hanging on to the door jam and begging me not to take her … please … not today. I don’t know why that story comes to mind. She was just 5 years old … a babe really. It was so hard. And there was the day her hair was falling out (with tumor # 3 and chemo session #2). She had gone swimming with her class and had her hair tied back in a hair tie, and the hair was all matted and she couldn’t get the hair tie out because all the loose hair was entangled in the hair tie. 2 days later she was completely bald and in the hospital with a zero white count. And I remember that morning, seeing her suddenly covered with bruises, a bloody nose, sore throat (because she was bleeding in her mouth) and rectal bleeding and a fever of 103. This was our first experience with the bone marrow suppression of chemotherapy. She had no white blood cells, and barely any platelets (and not many red cells either!) What would have happened if she couldn’t have gotten transfused? I remember seeing her swollen face after her first brain surgery … I remember her reaching out to touch our hands after her last craniotomy, showing us she could move her arm. I remember the neurosurgeons description of removing her bloody vascular tumor and her necrosed brain just coming out with it (then I remember vomiting shortly after). And I remember all the love. The love of those around us, the love of those thinking about us, caring about us. I remember the papa’s pizza party, the dessert and jazz festival at the middle school, the bread-making day at Great Harvest, and the dinner at our Indian restaurant. I remember these events, but I remember all the sharing and caring – the true sense of community.
I’m writing this and thinking … I can’t believe where we’ve been and what we’ve lived through. And I can’t believe we’re all still here. And we’re all (reasonably) sane. And to look at Alice, it’s so hard to believe how much she’s been through … and to know we’re not through. But guess what??? Alice turns 13. We’ve come this far; she’s doing so great, and who knows …..
Thank you all for being there and for sharing in our journey. I know we wouldn’t have made it if it weren’t for all of you.
Peace and love,
Susan
I was reading through a web site of a wonderful family going through the battle of cancer with their adorable daughter and I was so struck with a barrage of memories and thoughts that I needed to write. The web site tells the story of the first time she developed a fever from chemo and needed antibiotics and hospitalization, and transfusion, and I was brought back in time. They also tell a story about how her family has watched American Idol and how they loved Chris Daughtry (one of the idol finalists – who has a shaved head) and how Chris called their daughter on her birthday. I remembered how we watched American Idol (the first season) when Alice was recovering from her second brain tumor, and how we met Kelly Clarkson thanks to the Make-A-Wish organization.
I am reading their web entries and am so struck by the similarities (and differences) of the experiences, and by the amazing perseverance of the human spirit. I am so overcome with emotion and memories which flood my senses. How far we have come. What a journey we have had. What a difference a tumor (or 4) can make. What an amazing world we live in where people can come to together in love and support and show compassion and kindness.
Many of you may know that over the course of the last 7 years since we began treatment on Alice’s original tumor on May 13th of 1999, I have written. Originally I e-mailed a small group of family and friends to keep them updated. In reality, I wrote for me. I wrote because writing was a way for me to get it out, to cope, to make things which seemed so unreal, more palatable; to get feelings out in the open so the burden was not just my own. I always have said it was my way to get my thoughts (and fears) out into the universe and release them. As time went on and chemotherapy continued, and then more tumors came, I kept writing. My e-mail list grew and people forwarded my messages on to others and most recently, we started the blog site. What has happened as a result is that I have volumes of writing, volumes of thoughts and feelings which have been put into words. And today, reading this other family’s experiences, I am so moved by all they are experiencing. I am so amazed by where my family has been.
Numbers come to mind. 70 weeks of chemo with her original tumor, 79 transfusions with the third tumor (and second round of chemo), 4 tumors, 3 distinct tumor types, 7 years. 3 brain surgeries, 2 episodes of complete baldness, 1 bone marrow biopsy, 4 hospitalizations for no white cells and fever. And through it all, one port (which has lasted 7 years). How many MRI’s? At least 6 a year for the last 7 years, plus a half a dozen CT scans. And how many needle pokes??? Way too many to count. And how much vomiting … oh the vomit stories we can tell.
Actually so many stories come to mind; some difficult, some amazing. I am reminded for some reason of the day I dragged Alice out of the house kicking and screaming to take her to a chemo treatment in Portland. She was hanging on to the door jam and begging me not to take her … please … not today. I don’t know why that story comes to mind. She was just 5 years old … a babe really. It was so hard. And there was the day her hair was falling out (with tumor # 3 and chemo session #2). She had gone swimming with her class and had her hair tied back in a hair tie, and the hair was all matted and she couldn’t get the hair tie out because all the loose hair was entangled in the hair tie. 2 days later she was completely bald and in the hospital with a zero white count. And I remember that morning, seeing her suddenly covered with bruises, a bloody nose, sore throat (because she was bleeding in her mouth) and rectal bleeding and a fever of 103. This was our first experience with the bone marrow suppression of chemotherapy. She had no white blood cells, and barely any platelets (and not many red cells either!) What would have happened if she couldn’t have gotten transfused? I remember seeing her swollen face after her first brain surgery … I remember her reaching out to touch our hands after her last craniotomy, showing us she could move her arm. I remember the neurosurgeons description of removing her bloody vascular tumor and her necrosed brain just coming out with it (then I remember vomiting shortly after). And I remember all the love. The love of those around us, the love of those thinking about us, caring about us. I remember the papa’s pizza party, the dessert and jazz festival at the middle school, the bread-making day at Great Harvest, and the dinner at our Indian restaurant. I remember these events, but I remember all the sharing and caring – the true sense of community.
I’m writing this and thinking … I can’t believe where we’ve been and what we’ve lived through. And I can’t believe we’re all still here. And we’re all (reasonably) sane. And to look at Alice, it’s so hard to believe how much she’s been through … and to know we’re not through. But guess what??? Alice turns 13. We’ve come this far; she’s doing so great, and who knows …..
Thank you all for being there and for sharing in our journey. I know we wouldn’t have made it if it weren’t for all of you.
Peace and love,
Susan
# posted by heinzfamily @ 11:43 PM 
