Wouldn't you just know it? Just like those days when we'd come home from college all exhausted and overextended and promptly fall ill with whatever germ de jour happened to be circulating, Phil woke this morning feeling tres miserable with nausea and vomiting. Unfortunately, when one has cancer this can't be taken lightly so a call was put in to his oncologist.
For now it's IV fluids and take it easy on the stomach but I'll keep you posted in case of worsening. Nothing would be more unfortunate than to have worsening symptoms going into Christmas day! We're all hoping this is just lack of sleep or maybe something he ate. Perhaps we're serving too few leafy greens around here these days and he's been sneaking too many Nuts and Chews from our See's candy stash?
When we're not tending to him we'll be running around town doing those last minute errands I swore I wouldn't be running around doing this year. But mostly, we'll be remembering the best and most undeserved gift of all, the birth of Jesus, who "did not to come to explain away suffering or remove it, but to fill it with his presence."
As you enjoy your Merry Christmas please keep Phil in your prayers~
Much love,
Sally
Friday, December 24, 2010
Friday, December 17, 2010
Tsunami's and Celebrations
Take a seat folks, this is a long one!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Monday, December 6, 2010
Keepsakes
While decorating our tree last night my kids accidentally broke one of my oldest ornaments. It was a simple red ball that had my name and the year '68 painted on it. If I have the story right, back in the day when my dad was working at XRAY Medical Group as a radiation therapist, one of his partner's wives painted a bunch of them with our names and the year on it and gave them out as a small Christmas keepsake. I think it was Peggy Elliot if I'm not mistaken.
In all the excitement that decorating the tree brings, the ornament was just the first of several casualties. Unfortunately, our ceramic Darth Vader would lose an arm and Yoda would shatter to more pieces than is humanly possible to put back together after meeting with the marble flooring we normally find quite attractive.
When the ornament broke something inside me broke open as well. I was definitely not prepared for it. At first I was mad at the kids for breaking it. I was kinda primed anyway ~ I had, drum roll please.... "unfulfilled expectations". I really wanted a special family time doing this. Although Phil had been helping me get the tree ready to decorate, he'd really been splitting his time between that and the Steelers game. You know, putting the lights on between plays and commercials. Basically, he was appeasing me when he really would have rather been totally into his Steelers/Ravens do-or-die-game-for-a-bye-chance-at-the-playoffs deal but he helped me instead.
So, here I was spring loaded with my expectations of a beautiful tree-trimming experience as I launched into explaining to my kids why I was sad about the ornament when someone made a flippant comment and I heard Phil mention the game off to the side. I totally lost it!! Now, before you make any snap judgments about the situation or come down on anyone's side in this little family drama, let me finish the story and say that all my feelings up to now evaporated when I suddenly realized that what I was feeling underneath ALL OF THIS was profound sadness. My eyes brimmed with tears and I had to leave the room.
Well, the kids started asking where I was and their Dad told them to go apologize to me. At that I told him that it was him I needed to talk to. He appropriately responded with, "Me? What did I DO!?" Poor guy, didn't even know what hit him. When he came to me in the next room I was fully crying by now. What I told him was this. The little red ornament was a small keepsake but what I realized when it broke was that HE is the real keepsake for all of us and I am feeling uncertainty about where he will be next Christmas. That is what drives my desire to make each day together meaningful. He responded that he plans on being with us next Christmas. I agreed and so while that is our desire, the uncertainty is something we will continue to wrestle with and need to talk about.
When we walked back out to finish trimming the tree I gathered the kids to me and told them the real reason I was upset about the ornament breaking - because I was sad about Daddy but that it showed me that I loved them and our family more than ever. Both kids cried and Bennett said how sad he was that Yoda was broken beyond repair and Olivia talked about feeling left out when we left the room to go talk. I believe there are deeper messages here and that we are just beginning to see the grief work we need to do. For me, I am increasingly thankful for the coming of Christmas ~ for the messages of the songs, the scriptures and for the promise of our Savior.
Our tree turned out beautifully, so beautifully in fact, that Bennett recommended we call the Guinness Book of World Records to have them come take a picture for most beautiful tree ever. I couldn't agree more and will remember this one for a long time to come.
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