Journal entry by Tanya Davis —
I can't believe it's been six months since our last post! No news is mostly good news with these things, it seems. I have to admit that as much as I have LOVED caringbridge, the website, the phone app and all the wonderful support we have received because of this service; I am starting to have a bit of a trauma reaction to notifications about new posts. It seems so many people we love have lost their battles and caringbridge, unfortunately, is often the bearer of bad news. It makes it hard to want to post sometimes. I also can't bear to remove the sites of friends and loved ones we have followed, so it's sometimes hard to see all those names when I log in.
Today marks TWO YEARS since that fateful phone call! In some ways it's hard to believe that anniversary is already upon us - and in other ways it's like a lifetime! Two years ago our lives changed forever and I don't miss the absolute fear and sadness those days brought us. Today finds us in a whole different place - some good aspects, other not so good aspects, but all grateful for the gift of life and the opportunity we have been blessed with to still be together.
On the health update front, things have stabilized a little, but it's still a follow-up roller coaster ride. It seems we live from doctor's appointment to appointment, not quite sure whether to breathe until they confirm that things still look clean. We stay pretty nervous mostly because all the symptoms reappeared shortly upon finishing chemo and, with only random short breaks, have stayed pretty consistent. It seems Brenden will suffer with digestive troubles for the foreseeable future. But at the moment he is cancer free and we don't take that for granted!
On the Lynch Syndrome update, Brenden's mom recently tested positive for Lynch, so now we have some indication of how this might affect others. We knew it was a Talbot gene!! ;) One of Brenden's sisters tested positive and another was negative. So far, none of the other four siblings have been tested yet. And we simply don't know if Lynch Syndrome contributed to Renee's leukemia. In about a year or so Courtney will be old enough to be tested, if she chooses. I must admit I have mixed feelings about this. I hate the thought of my children living in fear, but with a genetic predisposition for such aggressive cancers, I think it is scarier not to know. I also worry about the long term insurability for life and health insurance - things you definitely shouldn't have to worry about for your kids - just one more gift that cancer keeps giving!
Brenden recently showed me an infographic (below) from the Colon Cancer Alliance. It showed the percentage of cancer survivors experiencing certain side effect symptoms, FIVE YEARS post diagnosis. To say this information was a bit depressing, is probably an understatement. Brenden currently deals with 8-10 of these symptoms on a daily basis, and some are still worsening instead of improving. Definitely NOT what we expected. But the more we talk and share stories with other cancer survivors, the more we realize this seems to be the norm. NO ONE expected the side effects of chemo to be so severe and long lasting. I think cancer aftercare (post chemo) has a LONG way to go, with a lot of room for improvement, both in rational expectations and in symptom management. Of course this list of symptoms is purely physical - it doesn't even begin to describe the emotional and psychological pitfalls of cancer recovery.
The take away: It's a long journey to be cancer free and then recovery takes even longer! I asked Brenden if he would have changed anything about his cancer treatment knowing what he knows now and what he would do if they said the cancer was back. His answer surprised me. He said he probably wouldn't change anything because he wouldn't want to chance not being here.
Because if he wasn't here right now, he would be missing a lot!! Our oldest daughter is a high school SENIOR - we are working on college applications with her in our spare time! Our youngest son started Kindergarten! We are officially an all "school-aged kids" family! Our second oldest daughter is teaching herself to play the ukulele and it's bringing back fond Hawai'i memories for all of us! Our youngest daughter is still very much a daddy's girl and the thought of her missing out on sharing life with her dad makes me shudder! There's a LOT going on these days and it takes all of our energy to stop and breathe and try to take it all in and enjoy.
I've had a few folks around me get cancer diagnoses in the past few months. I can see the anquish and the sheer exhaustion in their expressions that I recognize so well. My heart goes out to them - it really is a club you never wanted to belong to that brings with its tremendous challenges, even more magnificent blessings! The beauty of the human heart in its capacity to love and empathize still amazes me. Brenden and I saw the movie "The Giver" recently and I cried through most of the movie. In some ways looking back on our cancer journey thus far reminds me of this movie. The early days were like the black and white, drenched in numbness and disbelief. We lumbered through each day and I'm still not quite sure what propelled us forward some days. But looking back you see all the rays of sunshine that came into our life. The brightness of other people's hope and love for us, the power of their prayers. Those were the bright lights that kept us moving forward. Now the picture feels like it is mostly in color, with an occassional black and white day. But those black days remind us just how wonderful the colorful days really are and why this battle is worth fighting.
Mostly we are still working on banishing the fear and living life to its fullest each day. A great quote from a meeting this weekend reminded me again how important this is, "Heavenly Father is constantly raining blessings upon us, but it is OUR FEAR, OUR DOUBT, and our sin that, like an umbrella, block these blessings from reaching us." I keep telling myself that Fear and Faith cannot live in the same person at the same time. If I say it enough, one of these days I will just believe it and I won't have to keep reminding myself! With all our love! ~ Tanya & Brenden
Today marks TWO YEARS since that fateful phone call! In some ways it's hard to believe that anniversary is already upon us - and in other ways it's like a lifetime! Two years ago our lives changed forever and I don't miss the absolute fear and sadness those days brought us. Today finds us in a whole different place - some good aspects, other not so good aspects, but all grateful for the gift of life and the opportunity we have been blessed with to still be together.
On the health update front, things have stabilized a little, but it's still a follow-up roller coaster ride. It seems we live from doctor's appointment to appointment, not quite sure whether to breathe until they confirm that things still look clean. We stay pretty nervous mostly because all the symptoms reappeared shortly upon finishing chemo and, with only random short breaks, have stayed pretty consistent. It seems Brenden will suffer with digestive troubles for the foreseeable future. But at the moment he is cancer free and we don't take that for granted!
On the Lynch Syndrome update, Brenden's mom recently tested positive for Lynch, so now we have some indication of how this might affect others. We knew it was a Talbot gene!! ;) One of Brenden's sisters tested positive and another was negative. So far, none of the other four siblings have been tested yet. And we simply don't know if Lynch Syndrome contributed to Renee's leukemia. In about a year or so Courtney will be old enough to be tested, if she chooses. I must admit I have mixed feelings about this. I hate the thought of my children living in fear, but with a genetic predisposition for such aggressive cancers, I think it is scarier not to know. I also worry about the long term insurability for life and health insurance - things you definitely shouldn't have to worry about for your kids - just one more gift that cancer keeps giving!
Brenden recently showed me an infographic (below) from the Colon Cancer Alliance. It showed the percentage of cancer survivors experiencing certain side effect symptoms, FIVE YEARS post diagnosis. To say this information was a bit depressing, is probably an understatement. Brenden currently deals with 8-10 of these symptoms on a daily basis, and some are still worsening instead of improving. Definitely NOT what we expected. But the more we talk and share stories with other cancer survivors, the more we realize this seems to be the norm. NO ONE expected the side effects of chemo to be so severe and long lasting. I think cancer aftercare (post chemo) has a LONG way to go, with a lot of room for improvement, both in rational expectations and in symptom management. Of course this list of symptoms is purely physical - it doesn't even begin to describe the emotional and psychological pitfalls of cancer recovery.
The take away: It's a long journey to be cancer free and then recovery takes even longer! I asked Brenden if he would have changed anything about his cancer treatment knowing what he knows now and what he would do if they said the cancer was back. His answer surprised me. He said he probably wouldn't change anything because he wouldn't want to chance not being here.
Because if he wasn't here right now, he would be missing a lot!! Our oldest daughter is a high school SENIOR - we are working on college applications with her in our spare time! Our youngest son started Kindergarten! We are officially an all "school-aged kids" family! Our second oldest daughter is teaching herself to play the ukulele and it's bringing back fond Hawai'i memories for all of us! Our youngest daughter is still very much a daddy's girl and the thought of her missing out on sharing life with her dad makes me shudder! There's a LOT going on these days and it takes all of our energy to stop and breathe and try to take it all in and enjoy.
I've had a few folks around me get cancer diagnoses in the past few months. I can see the anquish and the sheer exhaustion in their expressions that I recognize so well. My heart goes out to them - it really is a club you never wanted to belong to that brings with its tremendous challenges, even more magnificent blessings! The beauty of the human heart in its capacity to love and empathize still amazes me. Brenden and I saw the movie "The Giver" recently and I cried through most of the movie. In some ways looking back on our cancer journey thus far reminds me of this movie. The early days were like the black and white, drenched in numbness and disbelief. We lumbered through each day and I'm still not quite sure what propelled us forward some days. But looking back you see all the rays of sunshine that came into our life. The brightness of other people's hope and love for us, the power of their prayers. Those were the bright lights that kept us moving forward. Now the picture feels like it is mostly in color, with an occassional black and white day. But those black days remind us just how wonderful the colorful days really are and why this battle is worth fighting.
Mostly we are still working on banishing the fear and living life to its fullest each day. A great quote from a meeting this weekend reminded me again how important this is, "Heavenly Father is constantly raining blessings upon us, but it is OUR FEAR, OUR DOUBT, and our sin that, like an umbrella, block these blessings from reaching us." I keep telling myself that Fear and Faith cannot live in the same person at the same time. If I say it enough, one of these days I will just believe it and I won't have to keep reminding myself! With all our love! ~ Tanya & Brenden
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