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.
Tuesday, November 30, 2010
Cancer Scars
At our Thanksgiving dinner my dad gave the blessing and as he tends to do on these occasions, got all verklempt as he spoke about a warrior and his scars who stood with us that night. He was talking about Phil of course.
My dad is a Lutheran preachers son through and through and waxes eloquent quiet regularly and on many a topic. He earned the nickname Plato from his children and having grown up in his home I can attest that it was not always a term of endearment. I can only speak for myself, but there were times when I would have opted for a spanking rather than a long drawn out lecture from him, my logic dictating that a spanking would hurt much less and be over more quickly. Pete, as he is known to his friends, or Quentin as his mother named him, is a retired physician in radiation therapy and knows what he speaks of when he calls Phil a warrior.
In his little preamble to the dinner prayer he talked of the elephant in the room - referring I suppose to the guests with their curiosities about the skinny guy with the huge scar across his forehead. He explained about the cancer and the fungal infection and he talked of Phil's eye that had gone silent. He championed Phil's strength and fight that he's exhibited all along the way. And then my dad talked about me.
I had on this beautiful new outfit and I'd done my hair and make up. I was looking really nice and put together for a change. But my dad knows better. He had my number like loving good Dad's do. He said, "Sally looks great tonight but she's got scars too." Wow, right between the eyes. He didn't really say much else, he didn't have to. That was enough to convey the truth about our situation. Cancer is taking a toll on me, our family, our life. We all have scars, Bennett and Olivia included. Some are visible to the eye and some are harder to see.
And here's the truth of it that I don't write about very often. Our cancer experience has been a particularly difficult and devastating experience because of how aggressive it came on, how intensely it has to be fought against and how complicated it has been to battle. Our dream to move to California and begin a new life here was radically altered almost the moment we got here. All the promises we made to our children have had to be postponed or altered in some way. There have been losses upon losses and changes upon changes. Little for them has been very secure for some time now. They essentially left everything they knew in Washington to arrive here to the uncertainty of their father's cancer. And they have more or less been relying on the certainty of their mother. Just yesterday Olivia asked me why she doesn't have a special friend just for her like she did in Washington. How do I answer that? It's partly because all my energies are spent battling and just getting through. It's because I don't have much time for any real women friends here that would allow her to have friendships with their daughters like we did in Washington. And Bennett was just beginning to shift that maternal bond over to Phil when he got sick. What horrible timing for a young boy of 9. Cancer is a cruel and consuming disease that is robbing all of us of life.
There are still many reasons to rejoice and I do find gratitude in every day. We had a wonderful Thanksgiving dinner and Dad's prayer was as touching as it was tearful. But I am tired and I know this hiatus in Phil's treatment is only contributing to the sense of fatigue and awareness of how long this journey will be. I know that my redeemer lives and yet I am human and I am unsatisfied with this stage of my life. I want more for my children. I want to know my kids are going to be OK and to know how this is going to turn out for them. I'm finding waiting on the Lord very hard to do. But what else is there?
My dad is a Lutheran preachers son through and through and waxes eloquent quiet regularly and on many a topic. He earned the nickname Plato from his children and having grown up in his home I can attest that it was not always a term of endearment. I can only speak for myself, but there were times when I would have opted for a spanking rather than a long drawn out lecture from him, my logic dictating that a spanking would hurt much less and be over more quickly. Pete, as he is known to his friends, or Quentin as his mother named him, is a retired physician in radiation therapy and knows what he speaks of when he calls Phil a warrior.
In his little preamble to the dinner prayer he talked of the elephant in the room - referring I suppose to the guests with their curiosities about the skinny guy with the huge scar across his forehead. He explained about the cancer and the fungal infection and he talked of Phil's eye that had gone silent. He championed Phil's strength and fight that he's exhibited all along the way. And then my dad talked about me.
I had on this beautiful new outfit and I'd done my hair and make up. I was looking really nice and put together for a change. But my dad knows better. He had my number like loving good Dad's do. He said, "Sally looks great tonight but she's got scars too." Wow, right between the eyes. He didn't really say much else, he didn't have to. That was enough to convey the truth about our situation. Cancer is taking a toll on me, our family, our life. We all have scars, Bennett and Olivia included. Some are visible to the eye and some are harder to see.
And here's the truth of it that I don't write about very often. Our cancer experience has been a particularly difficult and devastating experience because of how aggressive it came on, how intensely it has to be fought against and how complicated it has been to battle. Our dream to move to California and begin a new life here was radically altered almost the moment we got here. All the promises we made to our children have had to be postponed or altered in some way. There have been losses upon losses and changes upon changes. Little for them has been very secure for some time now. They essentially left everything they knew in Washington to arrive here to the uncertainty of their father's cancer. And they have more or less been relying on the certainty of their mother. Just yesterday Olivia asked me why she doesn't have a special friend just for her like she did in Washington. How do I answer that? It's partly because all my energies are spent battling and just getting through. It's because I don't have much time for any real women friends here that would allow her to have friendships with their daughters like we did in Washington. And Bennett was just beginning to shift that maternal bond over to Phil when he got sick. What horrible timing for a young boy of 9. Cancer is a cruel and consuming disease that is robbing all of us of life.
There are still many reasons to rejoice and I do find gratitude in every day. We had a wonderful Thanksgiving dinner and Dad's prayer was as touching as it was tearful. But I am tired and I know this hiatus in Phil's treatment is only contributing to the sense of fatigue and awareness of how long this journey will be. I know that my redeemer lives and yet I am human and I am unsatisfied with this stage of my life. I want more for my children. I want to know my kids are going to be OK and to know how this is going to turn out for them. I'm finding waiting on the Lord very hard to do. But what else is there?
Thursday, November 25, 2010
Thanksgiving
The Conrad's will be spending Thanksgiving day in sunny California with 29 friends and family at their home in the hills of beautiful El Cajon. We'll be enjoying more food than we can possible eat, more laughs than we've had in a long while and great company.
My sister Terry (of Mother Teresa fame from previous posts) usually hosts this shindig at her house down the street but seeing as how she only has about 1500 sq. feet to our 3400, well, you can do the spatial computations and figure it out. Having been in the Northwest for the last 14 years I've only heard about these Thanksgiving throw downs so I'm pretty pumped to be participating in one myself. This year I got off relatively easy for a well-known or at least self-professed good cook. Pecan Pie and Glazed Pearl Onions were all I have on my to do list, besides of course, having a clean house and supplying a few serving dishes et al. Easy peasy!!
What cracks me up is how intently my sister takes this whole turkey dinner considering she's a "vegetarian" and turkey and/or stuffing haven't passed her lips since Methuselah was a baby- and we all know Methuselah farts dust. Just goes to show you what being a real chef is all about. Kudos once again to you Mother Teresa. My sister reads this blog so that should show you something about the nature of my relationship with her, that I can put this kind of thing about her on the web for perpetuity and not make her mad. She really is a saint and I am so thankful to have her just down the street!
At any rate, it's now time for me to get those onions cooking and get showered before the guests arrive. Just wanted to give you a little perspective on how normal our day will be today. Full bellies, full hearts, probably some football too. Phil is doing great and we'll be thanking an Almighty God for that.
As I said on my Facebook post earlier today, I am thankful to have been given the opportunity to say THANK YOU over the past few months more times than I have in the last few years combined. Being humbled and laid low is truly the most high place. May you be equally transformed in your thanks giving.
My sister Terry (of Mother Teresa fame from previous posts) usually hosts this shindig at her house down the street but seeing as how she only has about 1500 sq. feet to our 3400, well, you can do the spatial computations and figure it out. Having been in the Northwest for the last 14 years I've only heard about these Thanksgiving throw downs so I'm pretty pumped to be participating in one myself. This year I got off relatively easy for a well-known or at least self-professed good cook. Pecan Pie and Glazed Pearl Onions were all I have on my to do list, besides of course, having a clean house and supplying a few serving dishes et al. Easy peasy!!
What cracks me up is how intently my sister takes this whole turkey dinner considering she's a "vegetarian" and turkey and/or stuffing haven't passed her lips since Methuselah was a baby- and we all know Methuselah farts dust. Just goes to show you what being a real chef is all about. Kudos once again to you Mother Teresa. My sister reads this blog so that should show you something about the nature of my relationship with her, that I can put this kind of thing about her on the web for perpetuity and not make her mad. She really is a saint and I am so thankful to have her just down the street!
At any rate, it's now time for me to get those onions cooking and get showered before the guests arrive. Just wanted to give you a little perspective on how normal our day will be today. Full bellies, full hearts, probably some football too. Phil is doing great and we'll be thanking an Almighty God for that.
As I said on my Facebook post earlier today, I am thankful to have been given the opportunity to say THANK YOU over the past few months more times than I have in the last few years combined. Being humbled and laid low is truly the most high place. May you be equally transformed in your thanks giving.
Monday, November 22, 2010
Holy $@#& Batman!!
"Holy Shit" aren't exactly the words you want to hear your oncologist utter to you in reference to your recent MRI. However, at Phil's follow up visit to review his MRI with Dr. Kossman this week those were precisely the words we heard. In point of fact, Dr. Kossman was actually quoting the neuroradiologist who had read the images and was reporting to us their combined surprise at finding Phil's MRI so dramatically improved.
The edema and swelling is significantly resolved as is the left to right shift of the brain. In terms of the hematoma and residual activity in the left frontal lobe, it is about 50% improved and most significantly, the basal ganglia (deep brain area) is about 30% improved from the previous scan. I think it is fair and accurate to say that we go into these appointments now with no expectations, not knowing what we're going to hear. Well, this was definitely the unanticipated and better than either of us imagined. So, after such a long run of hard knocks we've all been enjoying doing a little coasting.
Phil continues to slowly gain weight and enjoys eating seconds and occasionally thirds without thinking twice. Even though he hasn't had much of a sweet tooth and he's tightly controlling his blood sugar, he's not been one to turn down ice cream. He'll continue to receive Procrit weekly to build up his RBCs and he's contemplating a more regular walking routine to build his stamina. Ultimately, as he recovers from surgery and all that's complicated his fight, he's making use of this partial remission to strengthen himself for what's to come.
He'll be re-staged for the lymphoma in about 3 weeks with a CT scan of the chest, abdomen and pelvis and we'll have a better understanding of where things stand with that then. Until then it's gratitude, savoring each day and living in the moment.
The edema and swelling is significantly resolved as is the left to right shift of the brain. In terms of the hematoma and residual activity in the left frontal lobe, it is about 50% improved and most significantly, the basal ganglia (deep brain area) is about 30% improved from the previous scan. I think it is fair and accurate to say that we go into these appointments now with no expectations, not knowing what we're going to hear. Well, this was definitely the unanticipated and better than either of us imagined. So, after such a long run of hard knocks we've all been enjoying doing a little coasting.
Phil continues to slowly gain weight and enjoys eating seconds and occasionally thirds without thinking twice. Even though he hasn't had much of a sweet tooth and he's tightly controlling his blood sugar, he's not been one to turn down ice cream. He'll continue to receive Procrit weekly to build up his RBCs and he's contemplating a more regular walking routine to build his stamina. Ultimately, as he recovers from surgery and all that's complicated his fight, he's making use of this partial remission to strengthen himself for what's to come.
He'll be re-staged for the lymphoma in about 3 weeks with a CT scan of the chest, abdomen and pelvis and we'll have a better understanding of where things stand with that then. Until then it's gratitude, savoring each day and living in the moment.
Monday, November 15, 2010
You Gotta Have Friends
This Monday morning finds us back in the waiting room of the imaging center as Phil has yet another MRI. I've lost count but he must be nearing number 10 or so. Today's scan includes the brain, orbits and sinuses and we're looking at the edema and inflammation to see if it has resolved and of course, getting a read on the Mucor in the basal ganglia to see how it is responding to the increased dosing of Ambisome.
Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it. We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason! He rolled with it like a champ.
We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!
On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him. We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"! Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be. Classic!! Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you". She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!! You must know this is said with the most love you can imagine and not some slanderous slur.
These "yahoos" have done so much for my family, you have no idea. They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially. They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school. The call gave him lots to laugh about and was excellent medicine in it's own right. These are very good people.
The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results. We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit. I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life. It's going to be crazy but that's the only way we're gonna gitter done. Bring it!
Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it. We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason! He rolled with it like a champ.
We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!
On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him. We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"! Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be. Classic!! Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you". She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!! You must know this is said with the most love you can imagine and not some slanderous slur.
These "yahoos" have done so much for my family, you have no idea. They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially. They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school. The call gave him lots to laugh about and was excellent medicine in it's own right. These are very good people.
The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results. We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit. I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life. It's going to be crazy but that's the only way we're gonna gitter done. Bring it!
Wednesday, November 10, 2010
Gratitude
Many thanks to our friends and family who have so generously given of their finances to Team Conrad. We continue to call ourselves fortunate to know all of you and to be loved and prayed for by you.
We are deeply humbled in a way that neither of us has experienced before. In a time of economic uncertainty and struggle, we are blessed to have a thriving community that is willing and able to help us in this way.
You are easing our stress by lifting our burden, thus allowing us to focus on winning this war with cancer for Phil, and for our family's future. You have our literally, undying, gratitude.
Blessings upon you--
Sally and Phil
We are deeply humbled in a way that neither of us has experienced before. In a time of economic uncertainty and struggle, we are blessed to have a thriving community that is willing and able to help us in this way.
You are easing our stress by lifting our burden, thus allowing us to focus on winning this war with cancer for Phil, and for our family's future. You have our literally, undying, gratitude.
Blessings upon you--
Sally and Phil
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.
~Melody Beattie
Tuesday, November 9, 2010
Hurry Up and Wait
It's getting harder for me to find ways to share what seems like the same old information. To make our lives seem more interesting to read about than they probably are. As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family. Do our lives sound as mundane to you as they feel to us? Are you getting as antsy to move on with treatment as Phil is? Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"? Well, join the exclusive club known as "hurry up and wait".
This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low. This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily. Mucor, you may recall, needs the iron to replicate. Exjade robs the the Mucor of iron. This is just one more way to combat the Mucor and hopefully send it packing. Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.
This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things". Not for the pushovers of the world is ENT. I know why I called him a Zen Master. He is one smooth operator. Anyway... Overall, Phil looks great to him and he saw no signs of Mucor. He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue). He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.
Until then, it's start the Exjade and see what that does over the next month or so. When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile". So, there you have it. Awhile, folks. Just another way of saying "hurry up and wait" which of course is easier some days than others. Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.
This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low. This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily. Mucor, you may recall, needs the iron to replicate. Exjade robs the the Mucor of iron. This is just one more way to combat the Mucor and hopefully send it packing. Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.
This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things". Not for the pushovers of the world is ENT. I know why I called him a Zen Master. He is one smooth operator. Anyway... Overall, Phil looks great to him and he saw no signs of Mucor. He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue). He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.
Until then, it's start the Exjade and see what that does over the next month or so. When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile". So, there you have it. Awhile, folks. Just another way of saying "hurry up and wait" which of course is easier some days than others. Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.
Friday, November 5, 2010
Supporting Team Conrad
As I write this afternoon I find it difficult to believe that it is November. Yesterday saw a temperature of 100 degrees in downtown San Diego, the highest ever on record. It has been 92 and 98 here in El Cajon the last two days and we've had impromptu swim parties after school to close out the first week of the month. When I consider all that's happened in the last few months, this weather really shouldn't come as a surprise. After all, everything that's been happening to us has been surprising and unexpected.
Today Phil and I spent our morning with a disability lawyer, answering questions and completing all the necessary paperwork to file for federal disability benefits. What a process it is too. You know you are dealing with a governmental entity when they ask you questions like, "did you ever work for the railroad?" Or if they ask you more than three times "are you a U.S. citizen?"
Our attorney, Lawrence (Larry) Rohlfing, was the nicest, most down to earth guy you'd want to work with. After the whole rig-a-ma-role of providing him the detailed story of Phil's diagnosis, chemotherapy, brain infection, fungus-among-us, surgery and recovery details, Larry proceeded to assure us Phil'd be approved in short order for full benefits. In his professional opinion Phil's case would be quickly approved and after the standard waiting period of 5 months he'd be receiving benefits. What's more, if things went as smoothly as he predicted, he would not be charging us a cent. Can I get a whoot whoot?! It took him at least 1 1/2 billable hours to complete all the paperwork just to submit Phil's application. You and I know there's more behind the scenes crapola for him to do so that was not an insignificant gesture.
While this is great news, practically, we continue to have needs financially and will for a long time to come. Phil has been out of work since this began and I have been unemployed outside of our home as well. Obviously, my job has been to care for him, manage the medical details and moving parts, and to care for our two young children. If you are inclined to support us financially, we are asking you to consider a $10 or $20 monthly donation, committing for a year like an NPR fund raising drive - that would give Phil and I a figure that we could budget with. The wisdom in this approach is to give Phil and I financial peace of mind throughout the uncertainties of the coming year. If giving a one time donation works better for you that will of course be appreciated as well.
Today Phil and I spent our morning with a disability lawyer, answering questions and completing all the necessary paperwork to file for federal disability benefits. What a process it is too. You know you are dealing with a governmental entity when they ask you questions like, "did you ever work for the railroad?" Or if they ask you more than three times "are you a U.S. citizen?"
Our attorney, Lawrence (Larry) Rohlfing, was the nicest, most down to earth guy you'd want to work with. After the whole rig-a-ma-role of providing him the detailed story of Phil's diagnosis, chemotherapy, brain infection, fungus-among-us, surgery and recovery details, Larry proceeded to assure us Phil'd be approved in short order for full benefits. In his professional opinion Phil's case would be quickly approved and after the standard waiting period of 5 months he'd be receiving benefits. What's more, if things went as smoothly as he predicted, he would not be charging us a cent. Can I get a whoot whoot?! It took him at least 1 1/2 billable hours to complete all the paperwork just to submit Phil's application. You and I know there's more behind the scenes crapola for him to do so that was not an insignificant gesture.
While this is great news, practically, we continue to have needs financially and will for a long time to come. Phil has been out of work since this began and I have been unemployed outside of our home as well. Obviously, my job has been to care for him, manage the medical details and moving parts, and to care for our two young children. If you are inclined to support us financially, we are asking you to consider a $10 or $20 monthly donation, committing for a year like an NPR fund raising drive - that would give Phil and I a figure that we could budget with. The wisdom in this approach is to give Phil and I financial peace of mind throughout the uncertainties of the coming year. If giving a one time donation works better for you that will of course be appreciated as well.
If you aren't in a position to help financially then please continue to lift us up in prayer, write to us with your encouragement and words of love, and continue to cheer Phil and I on with your words, texts, calls and funny stories. We constantly rely on the love, support and fellowship of Team Conrad!
Thank you for all that you've done and are doing for us. We are humbled and amazed at the outpouring of God's love for us!
Livestrong and love one another well!
Sally
DONATING to TEAM CONRAD
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3- type in socalconrads@gmail.com
4- enter $ amount
5- click on the <personal> tab
6- select gift
7- click on the <send> button
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3- type in socalconrads@gmail.com
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Monday, November 1, 2010
Light in the Darkness
This is the quietest this blog has been since it's inception. There isn't much new to report regarding Phil. Don't get me wrong, the way the man continues to amaze has become routine and almost blase. He's building strength and improving every day. Just this morning he got up before the kids, emptied the dishwasher, loaded it again, and then got them up and helped them get ready for school.
I don't know about you, but in our household, this is no small feat. Waking our children in the wee hours of the morning is a risky proposition and not for the faint of heart or for the energy-challenged. Personally, I usually have a cuppa joe prior just to steel myself for the task. But Phil? Not him. He just marched in cold turkey and did the deed. He took no prisoners and made it happen. Yeah, he's coming back online for sure. What's most amazing (and actually challenged my pride a bit, I gotta confess) is that there was no whining. The alpha male is back in action. Praise Jesus and all He stands for. I think my pride will survive.
The main reason there's been no communique from moi has everything to do with moi. I believe I've said it before but it bears repeating. When Phil does better, I tend to do worse. Or at least for a while I do worse. This last week was a crucible and a gauntlet that had to be gone through but like all crucibles and gauntlets, it hurt like hell but I am the better for it having come out the other side.
For all you migraineurs out there all I have to do is mention the word migraine and I have your complete understanding of what I went through last week. (Non-migraineurs just imagine having the worst headache of your life on one side of your head, right behind your eye, with some degree of nausea and a complete lack of energy, apathy really, for about 6 days). Combine that with ineffective medication, sleep deprivation secondary to dealing with my children's night terrors and grief reactions and you have the essence of the fog I found myself in. Unfortunately it didn't stop there. What migraineurs also know is that there is often a depressive element that comes from being so incapacitated by pain and from living in such an altered state for that length of time. It was a dark, long and lonely week.
The hardest part about it all? Continuing to be chief cook and bottle washer. Being mom, wife, nurse, chauffeur, cleaner, cook, laundress, teacher, disciplinarian, comforter. Did I leave anything out? Oh yeah, being me! I had a feeling I didn't have much reserve in me but after this past week, I now know in no uncertain terms that I have no reserve. It's not an indictment of anyone or a judgment. It just is what it is, a sad statement of fact about the ravages of cancer on the family and the care givers. So, not only wasn't I capable of writing the blog, but I was also taking a few days rest. Besides, what was there to write about at that point?
Well, then came Sunday. I asked Phil to come to church with me and we headed to Newbreak, a church I feel fed by and Bennett enjoys for the kids worship. Lately the kids will say "I don't want to go to church" but then they have a great time. This Sunday was no exception. I told them I needed to go to feed my soul and feel the light of God and I was happy they and Daddy were coming with me.
The sermon was called "Avoiding the Beat Down" and was basically about how to avoid becoming beat down by the battle with the evils in this world. It was a Halloween theme but I could see all the ways God was talking to my soul - about not being beat down by migraines, being chief cook and bottle washer, by my responsibilities to Phil and my kids, not being beat down by cancer.
I don't know about you, but in our household, this is no small feat. Waking our children in the wee hours of the morning is a risky proposition and not for the faint of heart or for the energy-challenged. Personally, I usually have a cuppa joe prior just to steel myself for the task. But Phil? Not him. He just marched in cold turkey and did the deed. He took no prisoners and made it happen. Yeah, he's coming back online for sure. What's most amazing (and actually challenged my pride a bit, I gotta confess) is that there was no whining. The alpha male is back in action. Praise Jesus and all He stands for. I think my pride will survive.
The main reason there's been no communique from moi has everything to do with moi. I believe I've said it before but it bears repeating. When Phil does better, I tend to do worse. Or at least for a while I do worse. This last week was a crucible and a gauntlet that had to be gone through but like all crucibles and gauntlets, it hurt like hell but I am the better for it having come out the other side.
For all you migraineurs out there all I have to do is mention the word migraine and I have your complete understanding of what I went through last week. (Non-migraineurs just imagine having the worst headache of your life on one side of your head, right behind your eye, with some degree of nausea and a complete lack of energy, apathy really, for about 6 days). Combine that with ineffective medication, sleep deprivation secondary to dealing with my children's night terrors and grief reactions and you have the essence of the fog I found myself in. Unfortunately it didn't stop there. What migraineurs also know is that there is often a depressive element that comes from being so incapacitated by pain and from living in such an altered state for that length of time. It was a dark, long and lonely week.
The hardest part about it all? Continuing to be chief cook and bottle washer. Being mom, wife, nurse, chauffeur, cleaner, cook, laundress, teacher, disciplinarian, comforter. Did I leave anything out? Oh yeah, being me! I had a feeling I didn't have much reserve in me but after this past week, I now know in no uncertain terms that I have no reserve. It's not an indictment of anyone or a judgment. It just is what it is, a sad statement of fact about the ravages of cancer on the family and the care givers. So, not only wasn't I capable of writing the blog, but I was also taking a few days rest. Besides, what was there to write about at that point?
Well, then came Sunday. I asked Phil to come to church with me and we headed to Newbreak, a church I feel fed by and Bennett enjoys for the kids worship. Lately the kids will say "I don't want to go to church" but then they have a great time. This Sunday was no exception. I told them I needed to go to feed my soul and feel the light of God and I was happy they and Daddy were coming with me.
The sermon was called "Avoiding the Beat Down" and was basically about how to avoid becoming beat down by the battle with the evils in this world. It was a Halloween theme but I could see all the ways God was talking to my soul - about not being beat down by migraines, being chief cook and bottle washer, by my responsibilities to Phil and my kids, not being beat down by cancer.
After the service I asked Phil if he'd like to receive prayer up front from the prayer team and he agreed. A bit of a surprise since he's been on a bit of a spiritual journey of late and I didn't know what he'd say. We went up front and talked with Mike, the pastor who called over an elder, anointed Phil with oil, prayed and quoted James 5:14 , "Is any of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord." It was a powerful prayer time and both of us were blessed by it.
When it came time to pick up Bennett from kids worship, he handed me a certificate, very nonchalantly. When I asked him what it was, he said, "I gave my heart to Jesus today". It was a Certificate of Salvation they gave out to commemorate the day. His teacher came over to me and said how excited he was for Bennett and how choked up he always gets for the kids when their names are written in The Book of Life. Bennett came over and whispered to me that the teachers wanted all the kids to say a prayer together but he couldn't wait and said his silently in his heart while they were all waiting. So typical!! I love that boy even with all his impatience.
When it came time to pick up Bennett from kids worship, he handed me a certificate, very nonchalantly. When I asked him what it was, he said, "I gave my heart to Jesus today". It was a Certificate of Salvation they gave out to commemorate the day. His teacher came over to me and said how excited he was for Bennett and how choked up he always gets for the kids when their names are written in The Book of Life. Bennett came over and whispered to me that the teachers wanted all the kids to say a prayer together but he couldn't wait and said his silently in his heart while they were all waiting. So typical!! I love that boy even with all his impatience.
I had just been talking with my sister Anita about this very thing - what God is up to behind the scenes that we can't see. What He will do with all this suffering, with Phil's cancer battle, with the story of Phil's amazing recovery from this horrible infection. How will God use these experiences to further His kingdom and to bring glory to his name? Because God doesn't waste anything.
As we were walking out on our way to the car I started crying. I was so happy! My son came into the Kingdom of God and has started a relationship with the God of the universe. Right now, while he is so vulnerable, he has Jesus in his heart. He asked me why I was crying and I told him how happy I was that we'd be seeing each other in heaven. And that I knew it was well with his soul. He smiled at me and gave me a big hug and said "It's gonna be OK Mom." God fed my soul and then some yesterday and claimed victory over the darkness once again.
Tuesday, October 26, 2010
You Look Mahvelous
All day yesterday I struggled with a killer migraine. And all day yesterday Phil came through for me in ways I couldn't have imagined he'd be able to come through for me even a week ago. He has become more and more independent and engaged every day. Perhaps the best thing he did for me was put the kids to bed. You know that feeling, at the end of a long day when you're tired, they're tired and all you want is for them to go to bed so you can go to bed? He did that, all by himself. People, that is HUGE. Bennett alone is a whirling-dervish at bedtime and Olivia saves her histrionics for then as well so to get the two of them to bed with jammies, brushing teeth, stories, finding doggo (the essential nighttime security blanket) songs and a prayer, well-- kuddos my dear husband, kuddos. No wonder you are still asleep as I write this at 10:15 a.m. the next morning : ).
We had our follow visit to review the MRI with Ghosh yesterday. As we drove there I asked Phil about his emotional life. As you know, I've been trying to discern what goes on inside that head (and heart) of his. I asked him how he was feeling and commented that he didn't seem to "go deep" anymore. He agreed. I asked him why he thought that was. Silence. I thought about asking him again. More silence. I thought about rephrasing the question. More silence. Now it had been at least a minute. Maybe he hadn't heard me, maybe he'd spaced out. Right when I was about to say something because I was running low on perspective, he spoke. He said he was searching for the right word to express what he wanted to say.
We had our follow visit to review the MRI with Ghosh yesterday. As we drove there I asked Phil about his emotional life. As you know, I've been trying to discern what goes on inside that head (and heart) of his. I asked him how he was feeling and commented that he didn't seem to "go deep" anymore. He agreed. I asked him why he thought that was. Silence. I thought about asking him again. More silence. I thought about rephrasing the question. More silence. Now it had been at least a minute. Maybe he hadn't heard me, maybe he'd spaced out. Right when I was about to say something because I was running low on perspective, he spoke. He said he was searching for the right word to express what he wanted to say.
Partly, to "go deep" was exhausting and honestly, he was tired all the time. But it was more than that. He just couldn't get there. And today, he couldn't find the word he wanted to use to explain why he couldn't go there. It was eluding him and it took too much energy to find it. Well I guess that really sort of says it all, doesn't it? When one can't find the words to say what one wants to say in one's thinking mind, how is one going to say it out loud? That has got to be a monumental challenge and frustration and given everything else he's got going on, not a priority. I'm beginning to understand. Duh Sally.
Dr. Ghosh was quick to pull up the MRI on his computer and show us his findings. (It's funny, I know Phil is feeling better because while we were waiting he tried to take a peek at his MRI on the computer. I mean they were right there and he could just double click on them to blow them up. He does after all know how to read an MRI. So what if they're usually knee and shoulder MRI's?). Anyway, we were shown the results and they were as we had been told. We could see the edema and the slight shift of the brain. But Dr. Ghosh barely mentioned it. He was all agog about how fantastic Phil looked and sounded. He again called him an outlier and was ecstatic to see him doing so well. He didn't want to do anything else with his treatment plan. Whatever Phil was doing he wanted him to keep doing because he was looking so mahvelous. In point of fact, he gave him a three week leash so to speak: no follow up until a repeat MRI in three weeks. Yeah baby! Less OV's (office visits)!!
Ghosh also commented that Phil's mentation (mental function, activity of the mind) looked good. When asked he said that the blunted affect we'd been experiencing was all due to the surgery and the bi-frontal process going on from the edema. He felt it would resolve once the edema and the hematoma from the surgery resolved and that it would be a temporary situation. What great news! Those of us in daily relationship have reason to hope that we will have our deep thoughts with Phil Conrad once again. In all seriousness, we can hope and pray for a rich interior life for Phil once again, something he has always loved and lived for. Praise God for the skilled hands of Dr. Ghosh and the serious grit and determination of Phil Conrad.
Monday, October 25, 2010
Sins of Omission
Funny how time flies when you put your head down and try to catch up on a fraction of what you've neglected for the last few weeks. Wait, we're friends by now, so I'll be honest and call a spade a spade - some of these things have been neglected since I moved into The Big House and they still didn't get addressed this weekend, but that's a matter unto itself and NOT the point of this post. The point of this post is to inform you that I may have dropped the ball on letting you know what happened a few days ago on the follow up phone call with Dr. Mayer.
Life just got to rolling along what with Brad Bruckman and Tim Spence coming to town, a trip to Oma's Pumpkin Patch and the much anticipated Fuerte Elementary School Trick or Treat Carnival this weekend so I guess I just filed the information and went along my merry way. You'll have to excuse me if I occasionally forget that there are a hundred or more of you out there checking in and wondering how Phil is doing.
As I mentioned prior, since I live with the guy and we aren't in crisis mode anymore I am attempting to use more of my time to catch up on the multitude of things that have been cast by the wayside. I use the word attempting purposefully because the things that need to get done are, in no particular order: having the cars smog checked and registered, making 3 dentists visits for the kids and I, finding an ophthalmologist for Olivia, an orthodontist for Bennett, and last but certainly not least maintaining my PA certification by completing around 30 more hours of continuing medical education by the end of December. Deep breath.
What I did actually accomplish however as I mindlessly neglected the lot of you were 4 loads of laundry, vacuuming my entire side of the house and emptying all my trash cans, paying all our bills and getting rid of the 20 or so damned stuffed animals that we moved down here even though I KNEW we'd just end up getting rid of them once we got settled. Not the "blow for freedom" (as my dad would say) I was hoping for. We did make it to the pumpkin patch and the Trick or Treat Carnival and Brad and Tim took Phil out for an actual night on the town (read, dinner). The rest I am sorry to say, fell by the wayside once again. Ah well, hope springs eternal.
To be fair, the phone call was somewhat anti-climactic, perhaps that's why I omitted it. Dr. Mayer did in fact increase Phil's Ambisome to five days a week from three so he is now having M-F doses with weekends off. We'll start that today and follow the creatinine levels closely to see how his kidneys tolerate the daily dosing. If all goes well then the iron-binding agent Exjade will be added back in to rob the Mucor of iron. That decision will be made later this week or next.
In looking at an MRI, it's a bit like a Rorschach test. While the overall technical reading may be the same, show it to several physicians and you'll get three slightly different impressions, depending on their specialty. Technically, the edema in the L frontal area is compressing the ventricle on that side and causing a slight L to R shift of the brain. Today, we'll be hearing what Ghosh has to say about the edema and what his impressions are as the neurosurgeon on the case. He may add Mannitol, which is used clinically until a more definitive treatment can be applied. Because Phil cannot have any steroids for the edema, this may be our next step.
Other than that, perhaps watchful waiting will be employed? Perhaps further surgery to insert a catheter to reduce the edema? Like I said, we'll know more soon. And when we know more, you'll know more. Obviously, my to do list isn't going anywhere.
Life just got to rolling along what with Brad Bruckman and Tim Spence coming to town, a trip to Oma's Pumpkin Patch and the much anticipated Fuerte Elementary School Trick or Treat Carnival this weekend so I guess I just filed the information and went along my merry way. You'll have to excuse me if I occasionally forget that there are a hundred or more of you out there checking in and wondering how Phil is doing.
As I mentioned prior, since I live with the guy and we aren't in crisis mode anymore I am attempting to use more of my time to catch up on the multitude of things that have been cast by the wayside. I use the word attempting purposefully because the things that need to get done are, in no particular order: having the cars smog checked and registered, making 3 dentists visits for the kids and I, finding an ophthalmologist for Olivia, an orthodontist for Bennett, and last but certainly not least maintaining my PA certification by completing around 30 more hours of continuing medical education by the end of December. Deep breath.
What I did actually accomplish however as I mindlessly neglected the lot of you were 4 loads of laundry, vacuuming my entire side of the house and emptying all my trash cans, paying all our bills and getting rid of the 20 or so damned stuffed animals that we moved down here even though I KNEW we'd just end up getting rid of them once we got settled. Not the "blow for freedom" (as my dad would say) I was hoping for. We did make it to the pumpkin patch and the Trick or Treat Carnival and Brad and Tim took Phil out for an actual night on the town (read, dinner). The rest I am sorry to say, fell by the wayside once again. Ah well, hope springs eternal.
To be fair, the phone call was somewhat anti-climactic, perhaps that's why I omitted it. Dr. Mayer did in fact increase Phil's Ambisome to five days a week from three so he is now having M-F doses with weekends off. We'll start that today and follow the creatinine levels closely to see how his kidneys tolerate the daily dosing. If all goes well then the iron-binding agent Exjade will be added back in to rob the Mucor of iron. That decision will be made later this week or next.
In looking at an MRI, it's a bit like a Rorschach test. While the overall technical reading may be the same, show it to several physicians and you'll get three slightly different impressions, depending on their specialty. Technically, the edema in the L frontal area is compressing the ventricle on that side and causing a slight L to R shift of the brain. Today, we'll be hearing what Ghosh has to say about the edema and what his impressions are as the neurosurgeon on the case. He may add Mannitol, which is used clinically until a more definitive treatment can be applied. Because Phil cannot have any steroids for the edema, this may be our next step.
Other than that, perhaps watchful waiting will be employed? Perhaps further surgery to insert a catheter to reduce the edema? Like I said, we'll know more soon. And when we know more, you'll know more. Obviously, my to do list isn't going anywhere.
Thursday, October 21, 2010
Brain MRI
Thanks to all of you who texted and called throughout the day today to share words of encouragement either for Phil's MRI this morning or for the struggles we've had with our ailing kiddos. Our day started out well with BOTH kids heading off to school happy and seemingly healthy, or at the least, afebrile! It always amazes me how restorative eight hours of uninterrupted sleep can be. But who am I kidding? In point of fact it was only six hours but anything more than four feels fantastic! I can't rightly remember the last time I had eight hours of sleep and that my friends is a crying shame.
After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say. The creatinine level has stabilized along with the potassium and magnesium levels. Phil is slowly putting on weight at the rate of a lb or so each week. He has a stable anemia which does not need to be treated at this time and is gathering energy day by day. Dr. Kossman is now comfortable with seeing him every two weeks in follow up. Praise Jesus for one less appointment per week!
We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school. Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking. Oh well, the best laid plans... So, we picked him up and headed home to wait for the MRI results. It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun". Did I mention it was a long afternoon? And that it wasn't any fun? For anyone? I could digress here but I shan't.
We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."
The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot). It does not represent any new process or danger. The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far. Exactly what we were hoping to hear.
However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past. Edema always shows up after brain surgery and brain infection and is to be expected. The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.
Dr.'s Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps. It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now. They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function. Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce. Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting. There is a slight left to right shift beginning now that will need to be monitored. Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it. Tomorrow's update will determine another important step in Phil's battle, yet again.
Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week. He is understandably getting tired of being hooked up all the time. He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old. I know how difficult it is to be on this roller coaster and I'm not the sick one. I need to remember that when I want to pull my hair out - at least I still have my hair!
After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say. The creatinine level has stabilized along with the potassium and magnesium levels. Phil is slowly putting on weight at the rate of a lb or so each week. He has a stable anemia which does not need to be treated at this time and is gathering energy day by day. Dr. Kossman is now comfortable with seeing him every two weeks in follow up. Praise Jesus for one less appointment per week!
We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school. Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking. Oh well, the best laid plans... So, we picked him up and headed home to wait for the MRI results. It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun". Did I mention it was a long afternoon? And that it wasn't any fun? For anyone? I could digress here but I shan't.
We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."
The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot). It does not represent any new process or danger. The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far. Exactly what we were hoping to hear.
However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past. Edema always shows up after brain surgery and brain infection and is to be expected. The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.
Dr.'s Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps. It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now. They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function. Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce. Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting. There is a slight left to right shift beginning now that will need to be monitored. Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it. Tomorrow's update will determine another important step in Phil's battle, yet again.
Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week. He is understandably getting tired of being hooked up all the time. He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old. I know how difficult it is to be on this roller coaster and I'm not the sick one. I need to remember that when I want to pull my hair out - at least I still have my hair!
Tuesday, October 19, 2010
Super Star
It's been a week of follow up visits and Phil has received rave reviews. As I mentioned earlier, he was called an "outlier" by Dr. Ghosh. When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old. Everyone remarked at how far he'd come since being discharged from the hospital. He had surpassed all expectations.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
Monday, October 18, 2010
Phil 4:13
What is life but a series of emotions? I mean that is one way to look at life and I guess coming from a woman it's not a stretch to see it that way. That's how I've experienced my world over the last 40-some years, since as far back as I can remember anyway. Whether they be "good" or "negative" emotions I can remember always being aware of them and always wanting to make sense of them. I also remember being very aware of other people's feelings and emotions, often even when they weren't aware of them themselves.
As the drama and intensity of the last few weeks has subsided I find myself in a strange place emotionally. I am frankly exhausted; physically because of all the care taking and appointments, yes. And emotionally because there is room now to collapse and feel what there was no time for while the fires burned and the hurricane blew. But also because the kids and I are no longer being pumped up by a constant stream of adrenaline. You know that let down feeling that comes after you've swerved to miss a traffic accident when your heart finally stops racing, your breathing finally slows down, you feel shaky all over and you realize you've dodged a bullet? That's where we are now. We've dodged a big bullet and for now, we're in the eye of the storm where the birds are flying and the sun is shining.
On to the emotional life I've always had. Lately I'm feeling pretty much nothing. These days I'm all about taking care of business and getting things done. Fortunatley there is plenty to take care of and get done. I know it is my way of keeping it all together and is probably a defense mechanism of sorts yet it is eerie for me. On any given day prior to this whole deal, if you'd have asked me how I was doing, I'd have told you. In detail. And not just a "fine, how are you?" Anyone who knows me knows I give the real answer. I take pride in knowing how I am doing and in naming it and looking at it and turning it over and examining it, so much so that it is actually a problem sometimes. So for me to not be in touch with how I am doing is a bit surprising to some folks.
Phil still isn't a big talker about his inner life so I have to make my best guesses about where "he is " on any given day. That's also a big change. He too tended to name his emotions and talk all about them so he/me/we are all in uncharted territory together. The kids have their Dad home but he isn't the same guy. They are dealing with enormous changes themselves from having just moved and losing everything familiar to having a Dad with cancer and major complications who can barely take care of himself. Their emotions are huge and overwhelming - to them and for me. And they've only got one functioning parent for all intents and purposes.
SO, due to years and years of practice, I DO know how I am doing underneath it all, but I am focused on WHAT I am doing because to focus or talk about HOW I am doing would be my undoing. I don't know HOW I am doing it but I AM doing it. One day at a time, one hour at a time, one appointment at a time, one load of laundry at a time, one prayer at a time, one crisis at a time.
Philippians 4:13 I can do all things through Christ who gives me strength.
As the drama and intensity of the last few weeks has subsided I find myself in a strange place emotionally. I am frankly exhausted; physically because of all the care taking and appointments, yes. And emotionally because there is room now to collapse and feel what there was no time for while the fires burned and the hurricane blew. But also because the kids and I are no longer being pumped up by a constant stream of adrenaline. You know that let down feeling that comes after you've swerved to miss a traffic accident when your heart finally stops racing, your breathing finally slows down, you feel shaky all over and you realize you've dodged a bullet? That's where we are now. We've dodged a big bullet and for now, we're in the eye of the storm where the birds are flying and the sun is shining.
On to the emotional life I've always had. Lately I'm feeling pretty much nothing. These days I'm all about taking care of business and getting things done. Fortunatley there is plenty to take care of and get done. I know it is my way of keeping it all together and is probably a defense mechanism of sorts yet it is eerie for me. On any given day prior to this whole deal, if you'd have asked me how I was doing, I'd have told you. In detail. And not just a "fine, how are you?" Anyone who knows me knows I give the real answer. I take pride in knowing how I am doing and in naming it and looking at it and turning it over and examining it, so much so that it is actually a problem sometimes. So for me to not be in touch with how I am doing is a bit surprising to some folks.
Phil still isn't a big talker about his inner life so I have to make my best guesses about where "he is " on any given day. That's also a big change. He too tended to name his emotions and talk all about them so he/me/we are all in uncharted territory together. The kids have their Dad home but he isn't the same guy. They are dealing with enormous changes themselves from having just moved and losing everything familiar to having a Dad with cancer and major complications who can barely take care of himself. Their emotions are huge and overwhelming - to them and for me. And they've only got one functioning parent for all intents and purposes.
SO, due to years and years of practice, I DO know how I am doing underneath it all, but I am focused on WHAT I am doing because to focus or talk about HOW I am doing would be my undoing. I don't know HOW I am doing it but I AM doing it. One day at a time, one hour at a time, one appointment at a time, one load of laundry at a time, one prayer at a time, one crisis at a time.
Philippians 4:13 I can do all things through Christ who gives me strength.
Wednesday, October 13, 2010
Phil the Outlier
Judging from my last several posts, the grand and lengthy prosaic writings of mine were on hiatus. Whether it from sheer fatigue or necessity (or both), my dispatches were nothing if not terse. I believe that quality reflected both my emotional reservoir and my mental function in general. Fear not, I have had a much needed pedicure and am good to go for awhile longer.
Any-who! Things at Chez Conrad are measurably improved. I would say that 2 days ago Phil really turned a corner -- strangely enough when we finally started to administer the Ambisone he became more animated, got his bearings, started to eat more and became more intentional about living in just about every way. It has been an incremental gain and each day has provided a small reason for celebration. First it was Phil having eaten an entire hamburger for dinner. Next it was Phil getting up unsolicited to join my brother Stephen and I in the other room as we helped Bennett practice for a school presentation. Yesterday it was the fact that he only took one short nap all day. For the kids, it's that he's had the energy to read them stories and tuck them in at night. Last night he climbed up into Olivia's bunk bed! I tried hard not to have him see me spotting him but he made it up and down on his own.
Being his wife and caretaker and having been a PA for 8 years it's hard not to see all the things that need attending to. I guess having sat by his bedside for the last three weeks and filtering through all the dire predictions gave me a habit of doing that anyway. He's definitely got the weight issue hanging around and his magnesium is now low and being supplemented. His affect is still a bit flattened but the range of his personality is slowly widening. But hey, when I think of what he's been through in the last 8 weeks, I know I've got to chill-ax as they say and get some perspective.
Here's a little timeline:
Lymph node biopsy Aug 8th, 2010 - same day surgery
Diagnosis of T cell lymphocytic lymphoma on Aug 10th
Port a cath placement August 12th - same day surgery
1st chemotherapy treatment INPATIENT x 4 days Aug 17th - 20th
INPATIENT (thru ER) for spinal headache x 4 days Aug 22nd - 25th
2nd chemotherapy treatment INPATIENT x 4 days Sept 7th - 10th
Wednesday the 15th of Sept, his left eye begins to hurt. Over the next 24 hours severe left eye pain and dehydration develop and Phil is HOSPITALIZED again. Major work up ensues leading to eventual 3 week hospitalization with major sinus surgery, partial left frontal lobectomy and debridement and residual mucor mycosis infection.
INPATIENT Sept 16th - Oct 7th
He saw Dr. Ghosh today, the neurosurgeon, who told Phil he was an "outlier", someone who has defied the odds and beaten the predictions. When I look back at that timeline and see what he and we have been through in 8 short long weeks, I am nothing but amazed at his fortitude, tenacity and sheer determination. He's also had a stellar team of surgeons and infectious disease consultants working on his case and that's made a huge difference, no doubt. He's also had the prayers of the people.
I think I'll recommend that Dr. Ghosh read Malcolm Gladwell, author of "Outliers". I Googled him briefly as I wrote this and came across an interesting quote. In it he says, "My wish with Outliers is that it makes us understand how much of a group project success is. When outliers become outliers it is not just because of their own efforts. It's because of the contributions of lots of different people and lots of different circumstances— and that means that we, as a society, have more control about who succeeds—and how many of us succeed—than we think. That's an amazingly hopeful and uplifting idea."
Phil's success and that of our family through this trial is made bearable by your prayers, possible by our Savior and probable by the skillful hands and sharp minds of Kossman, Ghosh, Mansfield, and Mayer.
Any-who! Things at Chez Conrad are measurably improved. I would say that 2 days ago Phil really turned a corner -- strangely enough when we finally started to administer the Ambisone he became more animated, got his bearings, started to eat more and became more intentional about living in just about every way. It has been an incremental gain and each day has provided a small reason for celebration. First it was Phil having eaten an entire hamburger for dinner. Next it was Phil getting up unsolicited to join my brother Stephen and I in the other room as we helped Bennett practice for a school presentation. Yesterday it was the fact that he only took one short nap all day. For the kids, it's that he's had the energy to read them stories and tuck them in at night. Last night he climbed up into Olivia's bunk bed! I tried hard not to have him see me spotting him but he made it up and down on his own.
Being his wife and caretaker and having been a PA for 8 years it's hard not to see all the things that need attending to. I guess having sat by his bedside for the last three weeks and filtering through all the dire predictions gave me a habit of doing that anyway. He's definitely got the weight issue hanging around and his magnesium is now low and being supplemented. His affect is still a bit flattened but the range of his personality is slowly widening. But hey, when I think of what he's been through in the last 8 weeks, I know I've got to chill-ax as they say and get some perspective.
Here's a little timeline:
Lymph node biopsy Aug 8th, 2010 - same day surgery
Diagnosis of T cell lymphocytic lymphoma on Aug 10th
Port a cath placement August 12th - same day surgery
1st chemotherapy treatment INPATIENT x 4 days Aug 17th - 20th
INPATIENT (thru ER) for spinal headache x 4 days Aug 22nd - 25th
2nd chemotherapy treatment INPATIENT x 4 days Sept 7th - 10th
Wednesday the 15th of Sept, his left eye begins to hurt. Over the next 24 hours severe left eye pain and dehydration develop and Phil is HOSPITALIZED again. Major work up ensues leading to eventual 3 week hospitalization with major sinus surgery, partial left frontal lobectomy and debridement and residual mucor mycosis infection.
INPATIENT Sept 16th - Oct 7th
He saw Dr. Ghosh today, the neurosurgeon, who told Phil he was an "outlier", someone who has defied the odds and beaten the predictions. When I look back at that timeline and see what he and we have been through in 8 short long weeks, I am nothing but amazed at his fortitude, tenacity and sheer determination. He's also had a stellar team of surgeons and infectious disease consultants working on his case and that's made a huge difference, no doubt. He's also had the prayers of the people.
I think I'll recommend that Dr. Ghosh read Malcolm Gladwell, author of "Outliers". I Googled him briefly as I wrote this and came across an interesting quote. In it he says, "My wish with Outliers is that it makes us understand how much of a group project success is. When outliers become outliers it is not just because of their own efforts. It's because of the contributions of lots of different people and lots of different circumstances— and that means that we, as a society, have more control about who succeeds—and how many of us succeed—than we think. That's an amazingly hopeful and uplifting idea."
Phil's success and that of our family through this trial is made bearable by your prayers, possible by our Savior and probable by the skillful hands and sharp minds of Kossman, Ghosh, Mansfield, and Mayer.
Sunday, October 10, 2010
Getting the Hang of It
The pump issues are slowly getting better and we've been successfully hydrating Phil for a few days now. It's taken several attempts but we finally got the Ambisone going this morning though we're behind a day or so on that schedule. As the hassles multiplied I did my best to focus on the grand scheme of things as much as possible but 2 solid days of dealing with pump failures and incompatibilities pushed me right up to my limit. Sprinkle in a little sleep deprivation, PMS and fragile nerves and well, if I weren't so wiped out I might have hurt someone.
Tonight is feeling a tad bit more normal as evidenced by the young boys watching Ironman 2 in the other room and Olivia giving me a much needed "make over" in our half of the house. Olivia and I will round out our night with a chick flick to keep things in balance. A few moments of normal feel pretty good.
Pumps, meds and hassles aside, there are also new things to contend with. Phil's appetite is poor and I am concerned for his weight. If he loses much more, decisions will need to be made about supplementing him. This week's appointments will be crucial to our trajectory.
Tonight is feeling a tad bit more normal as evidenced by the young boys watching Ironman 2 in the other room and Olivia giving me a much needed "make over" in our half of the house. Olivia and I will round out our night with a chick flick to keep things in balance. A few moments of normal feel pretty good.
Pumps, meds and hassles aside, there are also new things to contend with. Phil's appetite is poor and I am concerned for his weight. If he loses much more, decisions will need to be made about supplementing him. This week's appointments will be crucial to our trajectory.
Saturday, October 9, 2010
At Home
Absolutely consumed with details, besot with IV pump failures and seemingly never ending days and just trying to keep up. My world is very small.
Thursday, October 7, 2010
Daddio is in the House
Phil, my main man is home tonight and sleeping soundly in his own bed after eating most of a pulled pork sandwich, carrots and dip, and a fresh fruit salad of strawberries, blueberries, grapes and pineapple. That's more than he's eaten in one sitting in days!
We've got our work cut out for us in the days ahead as our family takes on the bulk of his nursing care and he begins his home IV therapy. What with follow up visits with his various physicians and continual MRI monitoring of his brain and eye processes we'll be all about town! His kidney function is still a bit high so he's backing off to every other day Ambisome antifungal treatment with labs being drawn every other day to follow his progress. The iron chelation therapy will be held for now because it carries a risk of renal failure. It can be added in again later as the kidneys hopefully stabilize. And I believe I mentioned that the HBO (hyperbaric oxygen)therapy has been denied so is being addressed via other methods.
Tomorrow is Mr. B's 9th birthday and I am so happy for him that Dad is home for the party. I remember it like it was yesterday when I told Phil we were having a boy. He literally danced a jig in our Poulsbo, WA kitchen! October became a busy time for us with the addition of our kids birthdays and I've absolutely loved sharing it with them.
This year, it's already been a birthday month with wishes we'll never forget making and memories we'll keep forever. Thank you God that he's home.
We've got our work cut out for us in the days ahead as our family takes on the bulk of his nursing care and he begins his home IV therapy. What with follow up visits with his various physicians and continual MRI monitoring of his brain and eye processes we'll be all about town! His kidney function is still a bit high so he's backing off to every other day Ambisome antifungal treatment with labs being drawn every other day to follow his progress. The iron chelation therapy will be held for now because it carries a risk of renal failure. It can be added in again later as the kidneys hopefully stabilize. And I believe I mentioned that the HBO (hyperbaric oxygen)therapy has been denied so is being addressed via other methods.
Tomorrow is Mr. B's 9th birthday and I am so happy for him that Dad is home for the party. I remember it like it was yesterday when I told Phil we were having a boy. He literally danced a jig in our Poulsbo, WA kitchen! October became a busy time for us with the addition of our kids birthdays and I've absolutely loved sharing it with them.
This year, it's already been a birthday month with wishes we'll never forget making and memories we'll keep forever. Thank you God that he's home.
Wednesday, October 6, 2010
Homecoming III
Hopefully this will the last installment for today. The ID physician covering for Dr. Mayer is Dr. Butero and he has just returned to our room from reviewing Phil's chart and finishing his busy afternoon clinic. He feels that the decision to keep Phil here overnight can be looked at as a philosophical one, or as a matter of medical practice management style. In this instance being very cautious has it's benefits and will hopefully keep Phil out of the hospital longer.
SO, having said all that, here's what he's recommended: Phil's antifungal dose will be held tonight. He will have his creatinine level rechecked in the morning and adjustments to his medication dosing will be made accordingly. He will be sent home in the morning with orders for a few hours of IV saline per day to ensure adequate fluid intake. He will have VERY close monitoring of his kidney function as well as a multitude of other labs every other day.
Last but certainly not least, he will be following up in leapfrog fashion weekly with each of his new BFFs, Dr. Mayer (infectious disease), Dr. Ghosh (neurosurgery), and Dr. Kossman (oncology). If we get that HBO covered he'll be going there as well. Quite the social butterfly my man will be. Oh, and he's got a nine year old's birthday party to go to on Friday :)
SO, having said all that, here's what he's recommended: Phil's antifungal dose will be held tonight. He will have his creatinine level rechecked in the morning and adjustments to his medication dosing will be made accordingly. He will be sent home in the morning with orders for a few hours of IV saline per day to ensure adequate fluid intake. He will have VERY close monitoring of his kidney function as well as a multitude of other labs every other day.
Last but certainly not least, he will be following up in leapfrog fashion weekly with each of his new BFFs, Dr. Mayer (infectious disease), Dr. Ghosh (neurosurgery), and Dr. Kossman (oncology). If we get that HBO covered he'll be going there as well. Quite the social butterfly my man will be. Oh, and he's got a nine year old's birthday party to go to on Friday :)
Homecoming II
There were obviously some details missing from yesterday's blog. The missing pieces I'll be going over today just didn't belong in there with the sentimental journey I chose to go on and some days, I've honestly had it up to here with the details. Besides that, there are so many moving parts between taking care of Phil, seeing to my children's well-being, connecting with visiting friends, being available for consults, dealing with insurance, praying, etc., that I needed to keep it short and literally, sweet. Oh yes, and there is always remembering to eat, shower, breathe and sleep. Thank God for Trenna and Rene who are always willing to do my laundry, watch my kids and have a meal ready for me when I eventually get home.
I had been trying for the past three days to get to this blog but circumstances (which I've learned so well, are always out of my control) had prevented me again and again from writing it until yesterday. Now on to the details of his discharge as I know them.
The plan is to go home on IV Ambisome once a day and to have daily blood draws to watch the kidney function, electrolytes and blood counts. In addition Phil has been started on an iron binding medication to make him slightly iron-deficient. The Mucor needs iron to grow so by robbing it of iron, it weakens it. Also, Mucor hates an oxygen rich environment so HBO (hyperbaric oxygen) treatments have been prescribed. The hospital that Phil works at, Sharp Grossmont, has a hyperbaric oxygen chamber in which Phil will sit for an hour or two, three times a week for a month. The chamber looks like a small submarine and is filled with pressurized 100% oxygen. The point is to expose the Mucor to an environment which it abhors to weaken it from that angle as well. So far, the insurance company has approved the first two of these treatments and we are working on the HBO. It is not the most crucial of the three so we will continue to duke it out with the insurance as we move ahead.
RESET: As I am sitting here, the covering ID physician has come in and told us that Phil's creatinine, a measure of kidney function, has dramatically risen since yesterday. This is despite backing down on the Ambisome and giving him 2.4 liters of IV fluids a day. He is very concerned about sending Phil home on oral hydration and wants to back him down to every other day Ambizone. However this raises real concerns about the efficacy of the Ambizone against the Mucor. He will be advising Dr. Kossman that Phil will remain here another day to see if this lab result is an aberration and to make sure he is really ready to go home. In our experience, rarely has one day meant just one more day.
When I asks Phil how he feels and what he thinks, he says he'll do what he has to and he'll keep taking his lumps. "What can you do to change it?". And although he seems so chill about it, I know he is really disappointed, as we all are. He was so close!!
This development carries so many implications for the future. Yet, in keeping with my strategy of taking one day at a time, and sometimes 12 hours at a time, I'll be focusing on what is right in front of us at this moment and will keep you informed as I know more. Please be patient with me as I mentioned there are many moving parts in this fast-paced drama. I WILL be in touch.
As ever, your friend and companion on Phil's heroic journey--
Sally
I had been trying for the past three days to get to this blog but circumstances (which I've learned so well, are always out of my control) had prevented me again and again from writing it until yesterday. Now on to the details of his discharge as I know them.
The plan is to go home on IV Ambisome once a day and to have daily blood draws to watch the kidney function, electrolytes and blood counts. In addition Phil has been started on an iron binding medication to make him slightly iron-deficient. The Mucor needs iron to grow so by robbing it of iron, it weakens it. Also, Mucor hates an oxygen rich environment so HBO (hyperbaric oxygen) treatments have been prescribed. The hospital that Phil works at, Sharp Grossmont, has a hyperbaric oxygen chamber in which Phil will sit for an hour or two, three times a week for a month. The chamber looks like a small submarine and is filled with pressurized 100% oxygen. The point is to expose the Mucor to an environment which it abhors to weaken it from that angle as well. So far, the insurance company has approved the first two of these treatments and we are working on the HBO. It is not the most crucial of the three so we will continue to duke it out with the insurance as we move ahead.
RESET: As I am sitting here, the covering ID physician has come in and told us that Phil's creatinine, a measure of kidney function, has dramatically risen since yesterday. This is despite backing down on the Ambisome and giving him 2.4 liters of IV fluids a day. He is very concerned about sending Phil home on oral hydration and wants to back him down to every other day Ambizone. However this raises real concerns about the efficacy of the Ambizone against the Mucor. He will be advising Dr. Kossman that Phil will remain here another day to see if this lab result is an aberration and to make sure he is really ready to go home. In our experience, rarely has one day meant just one more day.
When I asks Phil how he feels and what he thinks, he says he'll do what he has to and he'll keep taking his lumps. "What can you do to change it?". And although he seems so chill about it, I know he is really disappointed, as we all are. He was so close!!
This development carries so many implications for the future. Yet, in keeping with my strategy of taking one day at a time, and sometimes 12 hours at a time, I'll be focusing on what is right in front of us at this moment and will keep you informed as I know more. Please be patient with me as I mentioned there are many moving parts in this fast-paced drama. I WILL be in touch.
As ever, your friend and companion on Phil's heroic journey--
Sally
Tuesday, October 5, 2010
Homecoming
Today, circurmstances dictated that I bring my son Bennett along with me to the hospital to help him finish up homework and get a handle on things. He usually isn't that excited to go visit Dad and who can blame him? His ninth birthday is this Friday which is to say that he exhibits all the age-appropriate behaviors you'd expect from a boy "his age". He finds the hospital strange smelling, boring, and frankly, it gets in the way of whatever it is he'd rather be doing. I've had to learn that none of this really has anything to do with his feelings for Daddio, rather it has everything to do with the self-centered little phase of life he's in.
This was a busy afternoon for us because Phil is finally due to go HOME tomorrow. He has received the all clear and there were people coming and going into his room quite often to give me instructions, prescriptions, go over insurance issues, round on him, etc. Bennett was transfixed and very popular. You'd have thought he was the patient for how much attention he got. Those of you who know him are hardly surprised by this. It was actually quite sweet to see his interest in what was going on. One physician makes a point of spending time during each visit to inquire regarding Phil's mental battle and he paid particular attention to the questions Bennett was asking, telling Phil what a great family he had around him even at that moment.
Finally it quieted down and for the first time in a long time, it was just the three of us together. We were way beyond the usual point when I'd be hearing the complaints of boredom and the wail for the vending machine. When I told Bennett I was going to snuggle with Dad for awhile and then we'd go home he came to the bed and started asking Phil about a hundred things at once. From his IV meds to the staples in his head wound, Bennett left no question unasked. He made comments about what he observed and listened as Phil talked about his experience over the last 3 weeks. It was a beautiful communion between father and son that was healing medicine for both of them, and for me. Bennett talked about the IV pole being Phil's staff of wisdom, his nourishment and life supply, and said "I'm not kidding Dad". No son, we know you aren't kidding and we were listening and hearing every word you were saying.
So, tomorrow Daddio comes home. He's been in the hospital fighting for his life for almost three weeks. He is damn tired but he has beaten some ridiculous odds and lived to tell the tale. He continues to face ridiculous odds. And he continues to fight. He needs to breathe fresh air. He needs fresh food. He needs his family and his home. He needs a break. And he needs continued prayer, love and support from his Team! You have no idea how much you mean to him. Your cards, letters, and texts keep him motivated and strong. They keep us both encouraged when the days are long and the miles are hard.
Moving on to the next chapter in faith that God is good all the time.
This was a busy afternoon for us because Phil is finally due to go HOME tomorrow. He has received the all clear and there were people coming and going into his room quite often to give me instructions, prescriptions, go over insurance issues, round on him, etc. Bennett was transfixed and very popular. You'd have thought he was the patient for how much attention he got. Those of you who know him are hardly surprised by this. It was actually quite sweet to see his interest in what was going on. One physician makes a point of spending time during each visit to inquire regarding Phil's mental battle and he paid particular attention to the questions Bennett was asking, telling Phil what a great family he had around him even at that moment.
Finally it quieted down and for the first time in a long time, it was just the three of us together. We were way beyond the usual point when I'd be hearing the complaints of boredom and the wail for the vending machine. When I told Bennett I was going to snuggle with Dad for awhile and then we'd go home he came to the bed and started asking Phil about a hundred things at once. From his IV meds to the staples in his head wound, Bennett left no question unasked. He made comments about what he observed and listened as Phil talked about his experience over the last 3 weeks. It was a beautiful communion between father and son that was healing medicine for both of them, and for me. Bennett talked about the IV pole being Phil's staff of wisdom, his nourishment and life supply, and said "I'm not kidding Dad". No son, we know you aren't kidding and we were listening and hearing every word you were saying.
So, tomorrow Daddio comes home. He's been in the hospital fighting for his life for almost three weeks. He is damn tired but he has beaten some ridiculous odds and lived to tell the tale. He continues to face ridiculous odds. And he continues to fight. He needs to breathe fresh air. He needs fresh food. He needs his family and his home. He needs a break. And he needs continued prayer, love and support from his Team! You have no idea how much you mean to him. Your cards, letters, and texts keep him motivated and strong. They keep us both encouraged when the days are long and the miles are hard.
Moving on to the next chapter in faith that God is good all the time.
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