After writing the last post I went back and read the blog I posted at this time last year. It was very instructional and surprising at the same time. It reminded me to consider perspective yet again. As I well know but often forget, things can change very quickly, in a matter of minutes. Other times they change imperceptibly, particularly when we are marking time and hoping for a specific outcome.
This time last year Phil had a normal bone marrow biopsy and a PET scan showing that his lymphoma had regressed and he was responding well to his chemotherapy. There was a small area in his chest which appeared to be residual scar tissue but otherwise he was looking fairly good. We were referred to UCSD for a bone marrow transplant consultation where we set those wheels in motion. We were cautiously optimistic even though the lymphoma continued to plague Phil with effusions.
And it was around this time last year that Phil went to Atlanta for a buddies trip - to see his high school friends whom he'd been getting together with for years. It was a calculated risk, that trip. He had developed new swollen lymph nodes prior to his departure which we weren't certain about. By the time he came home from that trip he was drastically altered. He came home with another pleural effusion and over the course of the next 2 1/2 months he'd deteriorate quickly despite an incredible will to live.
Two and a half months. I don't recall things changing so quickly or declining so rapidly. Each day was crammed with so many things to attend to, appointments to keep, endless emotional ups and downs. It was all so surreal and time took on the quality of suspended animation. It's no surprise to me that I lost sense of time. As my counselor so aptly put it this week, "don't be surprised by your capacity for storage. You had to put a lot of stuff away for later because of the chaotic nature of your life at that time." Well, I've been doing a good deal of unpacking lately. All of the sudden there seem to be a lot of packages showing up on my front door.
I don't think it's any coincidence that it is happening as I am rounding the bend into the anniversary of Phil's death. The routine of school, the approaching holidays, the heat and humidity - everything conjures up memories of those last days. As I lit a candle the other day the scent of it instantly took me back to our rental house on Lomita. I saw Phil in repose on our red couch, his feet swollen and propped up on pillows, in his hand the cup of "juice-water" he continually drank in those last days. I felt the bond of the circle of friends and family gathered there with us, surrounding him with immeasurable love and care. Those last days were time multiplied.
Now, as I go through the stuff that's showing up for me (my storage unit so to speak) I'm increasingly anxious to get through this year of firsts. To get it over with and start into the next year, the year after Phil died. Yet when I pause to reflect I realize I don't want to miss one moment of the next 2 1/2 months this time around. At this point last year I was inconsistently available for my children's needs emotionally. Thankfully there were other wonderful adults who stood in the gap. Now it's just us, Sally, Bennett, and Olivia day in and day out.
In these last weeks something subtle and sweet has been slowly developing between us a midst the anguish and anger we feel ~ feelings we too quickly take out on one another. We are all quite tired. We are collectively ready for a change. For our little threesome a crucial part of moving forward in change will require that I consistently be there for them as the painful and sad moments ahead intensify. "Life is change, growth is optional." I want to continue to show them the way through to growth and healing. May it be so.
Showing posts with label grief. Show all posts
Showing posts with label grief. Show all posts
Tuesday, September 4, 2012
Wednesday, August 29, 2012
Lost in the Supermarket
Yesterday
I found an old notebook that I used to keep track of things when I was preparing
to move down here from WA. It held lists
of house repairs, donations for the Goodwill, things to save for our garage
sale, crap to haul to the dump, items to give away to friends. There was a tremendously long TO DO list in
Phil’s handwriting that I had dictated to him while we were driving in the car
one day. This was followed by page after
page of errands that I had run in the days and weeks leading up to our departure
~ groceries, packing lists, dentist and doctor visits, car tune ups, and friends
to whom we’d need to say good-bye. There
was even a pro and con list of reasons for moving to San Diego
And
then, on one lone page, tucked among these lists,
was a notation long forgotten.
Phil
– another illness?
You
see, at that point Phil was already in the beginning stages of
what would eventually be diagnosed as lymphoma.
But at the time his symptoms were non-specific, very uncharacteristic for
lymphoma and frankly, confounding. While
packing up and making the transition to CA he and I were also trying to figure
out what was going on with him. He saw
his internist, a neurologist and a specialist in Seattle
I’ve
talked about my little journals before.
How they held my notes during his illness and contained my brain when I
had little to no sleep and couldn’t trust myself to remember details. They funded each and every blog post I wrote
during that terrible hard time. They are
a record of his treatment, his intense suffering, his humility and ultimately his
release. They are sacred because they
contain notations like the one I found yesterday that might pull me up short,
but remind me of other times and other places that were real and were
different. They show me that time passes
and things do change. More on that later.
There
is a song lyric that Phil would quote from time to time when was overwhelmed or
couldn’t make a decision. “I’m all lost
in the supermarket.” Such genius lyrics these
are, from The Clash. It became a code
between us when we were at a loss, literally or figuratively. We loved the idea of feeling lost in the "supermarket", a
metaphor for our everyday life. When you can't understand what's going
on with you or in your relationships and that stops the normal flow of your
days - the "shopping" as it were.
Well, Daddio, I'm all
lost in the supermarket.
I feel like this more often than I'd like to. Suddenly it's like I can't
do what I was easily doing everyday and it's because of something that's
lacking in me, and those voids aren't easy to fill. What's lacking stems
from the tremendous hole in my life where you used to be. That’s obvious
of course, but I'm struggling to understand how I lost so much of myself in your
death. I have been profoundly diminished.
I still
can't bring myself to hang any pictures of Phil in the new house. Like a
bad part of town or a corner of the woods you wouldn’t be caught in after dark,
I've been skirting around that area of life for the last little while.
I've given myself lots of reasons why I haven't put any up but truth be
told, I've been hiding out. It's just too painful. There are a few
scattered pictures sitting on shelves but the entire folder full of pictures
that I collected for his memorial sits untouched in my fire proof safe. And I can’t bring myself to hang our wedding
picture. It still sits in my closet, right where Trenna put it when we
moved in. One small example of all lost in the supermarket.
Phil is
gone. Now we are three. I get up every day and lean into the future with
my kids. I'm much more easily frustrated. I lose my temper and yell more.
I pick my battles and try to do my best. It's ridiculously hard
being a single parent, being a 45 year old widow, desiring to be fabulous on
occasion all the while recovering from a nuclear disaster. I do have good
days, don't get me wrong and we are making progress. I’m getting closer but I’m also shocked by
where I find myself. I don’t judge it,
but I’m shocked by how little progress I've made. The relief of his death and the end to his suffering has now passed. Now I'm on to a deeper grief ~ missing the healthy and vibrant man I loved and lived with all those years before. I’m just beginning to really grieve. It's a good, hard and very sad development.
But I trust my journals, things do change,
eventually. They always do.
Friday, April 27, 2012
That Place
It's been a particularly rough few days for me. The kids are fighting more, my fuse has become short, and I wear lethargy like a lead apron. The boxes are becoming more and more difficult to face each day. The high of moving is gone and we are all feeling the downturn. There is much more to it of course. There always is.
We've made several trips back to the rental to gather up straggling items, do a final walk through, take out garbage and set aside our Amvets donation. On each visit I've remarked to myself how glad I am to be out of that place with it's crumbling pathway walls, waist high weeds, wobbly faucet, 1950's insulation and chronic smell of smoke and ash. That place that until two months ago had no heat. That place so poorly managed. That place where Phil died.
If you ask the kids are they going to miss that place they'll say "No" very emphatically and might even call it a slum. I'd have to agree with them. But our hearts are sorely hurting for having left that place all the same. For no matter the condition of that house, it was our last home with Phil. It was the place where we witnessed his final hours of courage and humility and the place we gathered to share our heartbreak and sorrow. It was the place where neighbors cradled us in their collective arms and cared for us day after day after day. From this point forward we will only move further away from that place ~ which is both good and sad.
We've made several trips back to the rental to gather up straggling items, do a final walk through, take out garbage and set aside our Amvets donation. On each visit I've remarked to myself how glad I am to be out of that place with it's crumbling pathway walls, waist high weeds, wobbly faucet, 1950's insulation and chronic smell of smoke and ash. That place that until two months ago had no heat. That place so poorly managed. That place where Phil died.
If you ask the kids are they going to miss that place they'll say "No" very emphatically and might even call it a slum. I'd have to agree with them. But our hearts are sorely hurting for having left that place all the same. For no matter the condition of that house, it was our last home with Phil. It was the place where we witnessed his final hours of courage and humility and the place we gathered to share our heartbreak and sorrow. It was the place where neighbors cradled us in their collective arms and cared for us day after day after day. From this point forward we will only move further away from that place ~ which is both good and sad.
Sunday, December 18, 2011
I've been in bed more or less for the last 48 hours. Migraines have a way of doing that for me. They exercise control over all my best laid plans and take over my body, mind and even try to move in on soul territory. Fortunately, to use good old scary fundamentalist language "I've been washed in the blood of the lamb" and Satan's minions won't be able to touch me there with their fire pokers from hell (migrainous shocks of searing pain).
On Friday morning, the last day of school before Christmas break, I woke up with a killer headache and nausea and the distinct knowledge that I would not be operating any heavy machinery i.e. a car. When I told the kids of my predicament between waves of nausea, and asked if they wanted someone else to take them to school or if they would rather sleep in with me and miss their Christmas parties, they were in solidarity about staying home to care for me. Never have you heard such sweet children. "Oh Mom, we'll do whatever you need us to." "We won't fight. Promise." "I don't really care about parties anyway, Mom". And just like that, we were all back asleep until 9:30 a.m.
Once the kids got up they pretty much ran things around here. By that I mean there were no fights, no one got hurt and they ate ~ a little bit at least. When I finally stumbled out of my rack a few hours later they were both happily playing on their computer games and had eaten sourdough toast, 2 pears and a bowl of God-awful sugary cereal that I once swore I'd never buy. So much for that oath. The house was stone cold because I hadn't been up to make the fire but they'd improvised with layers, hoodies and blankets and none was the worse off for it. I was immediately thankful. I threw some real food at them and went back to bed to suffer some more in private. Despite a plethora of meds (AND sending a man to the moon) I still can't get rid of my migraines in less than two days.
That evening and next morning were a lot the same until I pulled out of the fog. Now, I gotta stop for a sec and pray you don't think you need to be calling CPS or anything because of my benign neglect here. It wasn't as bad as I've made it out to be. But I think it is high time I give you a slice of the reality you've been asking for and that I've been needing to provide so you don't think me so superhuman. Why yes, I, Sally Conrad, can be a crappy parent (wha? Shock! Awe!) and at times can barely make it through the day - migraine or not. For you see, today is day 3 and I'm finding it hard to break this cycle of being in bed all day and not doing anything. It was easy when the kids were in school, they had no idea. Now they are accomplices with me. I keep checking with them to see if they are OK and they assure me they are. They are each happy playing their DS or on the computer or reading or being by themselves. We are all just hanging out, separately. Part of me thinks we should all be together, "doing our grief" and the other part is loving the quiet solitude of "mischief managed". But at its roots it doesn't feel healthy and I know I have to be careful here.
On Friday morning, the last day of school before Christmas break, I woke up with a killer headache and nausea and the distinct knowledge that I would not be operating any heavy machinery i.e. a car. When I told the kids of my predicament between waves of nausea, and asked if they wanted someone else to take them to school or if they would rather sleep in with me and miss their Christmas parties, they were in solidarity about staying home to care for me. Never have you heard such sweet children. "Oh Mom, we'll do whatever you need us to." "We won't fight. Promise." "I don't really care about parties anyway, Mom". And just like that, we were all back asleep until 9:30 a.m.
Once the kids got up they pretty much ran things around here. By that I mean there were no fights, no one got hurt and they ate ~ a little bit at least. When I finally stumbled out of my rack a few hours later they were both happily playing on their computer games and had eaten sourdough toast, 2 pears and a bowl of God-awful sugary cereal that I once swore I'd never buy. So much for that oath. The house was stone cold because I hadn't been up to make the fire but they'd improvised with layers, hoodies and blankets and none was the worse off for it. I was immediately thankful. I threw some real food at them and went back to bed to suffer some more in private. Despite a plethora of meds (AND sending a man to the moon) I still can't get rid of my migraines in less than two days.
That evening and next morning were a lot the same until I pulled out of the fog. Now, I gotta stop for a sec and pray you don't think you need to be calling CPS or anything because of my benign neglect here. It wasn't as bad as I've made it out to be. But I think it is high time I give you a slice of the reality you've been asking for and that I've been needing to provide so you don't think me so superhuman. Why yes, I, Sally Conrad, can be a crappy parent (wha? Shock! Awe!) and at times can barely make it through the day - migraine or not. For you see, today is day 3 and I'm finding it hard to break this cycle of being in bed all day and not doing anything. It was easy when the kids were in school, they had no idea. Now they are accomplices with me. I keep checking with them to see if they are OK and they assure me they are. They are each happy playing their DS or on the computer or reading or being by themselves. We are all just hanging out, separately. Part of me thinks we should all be together, "doing our grief" and the other part is loving the quiet solitude of "mischief managed". But at its roots it doesn't feel healthy and I know I have to be careful here.
Thursday, December 8, 2011
Absences
I've been struggling mentally to write a blog for over a week. I deeply desire to keep in touch with all of you and yet it's taken me days and days to figure out what I want to write. I literally have three or four drafts of this post started. That's because each time I sit down to write it I'm in a different place emotionally and have an ever-changing point of view. It makes writing a focused post kinda challenging. Consider the fact that I haven't been sleeping well at all and you've got a recipe for blog disaster.
Early in the week I seemed to be doing quite well. I decorated my mantle on the weekend and put my Christmas tree up in the living room. My home now looks and feels festive and our Advent calendars are up to date. The kids are managing their schoolwork and Bennett earned 100% on a math benchmark test the day after returning to school. The early week was busily spent managing the details of widowhood. I gathered together the various paperwork necessary to begin the task of managing my financial affairs and planning for my future. An entire morning was spent in the local branch of the Social Security office and lots and lots of phone calls and letters have been made and written.
My nights this week have been busy too. I've had dinner with the neighbors and other friends and it's been nice to have the company and playmates for Bennett and Olivia. However, time spent with people means there is inevitable conversation about Phil and although I thought I was doing well, I'm clearly not. Too many tearful nights and not enough rest are a bad combination it turns out. The first chinks in the armor showed up mid week when I started feeling spread thin and canceled appointments that had previously seemed very important. Overnight I began to crave my quiet time and the social engagements that had kept me company and staved off loneliness didn't appeal to me at all. And then this morning, the bottom dropped out. The kids both woke up in "a mood". Olivia burst into tears and needed cuddles and Bennett begged for more sleep after struggling all night to get his fair share and calling on me to help him get it. We were, as a unit, blitzed. And I was, as a woman and mother, feeling disorganized and totally tapped out. It was inevitable that I would get to this point but I really didn't see it coming. Duh.
I knew that Phil was going to die a long time before he let himself realize it. My role as wife and caregiver required me to tolerate hearing the hard truth of what Dr. Kossman was spelling out for us at each and every cusp along Phil's arduous road when he could not. Most certainly it was God's grace that allowed me to begin my grieving process for Phil over a year ago. Because he was sick for such a long time and I grieved so much during the illness I had time to prepare for his death. But I could do nothing ahead of time to prepare for what I feel now - his absence. I feel what I do now in each unique moment and before I could only imagine the potential of his absence. And my imagination fell far short of the reality that is life without Phil.
Early in the week I seemed to be doing quite well. I decorated my mantle on the weekend and put my Christmas tree up in the living room. My home now looks and feels festive and our Advent calendars are up to date. The kids are managing their schoolwork and Bennett earned 100% on a math benchmark test the day after returning to school. The early week was busily spent managing the details of widowhood. I gathered together the various paperwork necessary to begin the task of managing my financial affairs and planning for my future. An entire morning was spent in the local branch of the Social Security office and lots and lots of phone calls and letters have been made and written.
My nights this week have been busy too. I've had dinner with the neighbors and other friends and it's been nice to have the company and playmates for Bennett and Olivia. However, time spent with people means there is inevitable conversation about Phil and although I thought I was doing well, I'm clearly not. Too many tearful nights and not enough rest are a bad combination it turns out. The first chinks in the armor showed up mid week when I started feeling spread thin and canceled appointments that had previously seemed very important. Overnight I began to crave my quiet time and the social engagements that had kept me company and staved off loneliness didn't appeal to me at all. And then this morning, the bottom dropped out. The kids both woke up in "a mood". Olivia burst into tears and needed cuddles and Bennett begged for more sleep after struggling all night to get his fair share and calling on me to help him get it. We were, as a unit, blitzed. And I was, as a woman and mother, feeling disorganized and totally tapped out. It was inevitable that I would get to this point but I really didn't see it coming. Duh.
I knew that Phil was going to die a long time before he let himself realize it. My role as wife and caregiver required me to tolerate hearing the hard truth of what Dr. Kossman was spelling out for us at each and every cusp along Phil's arduous road when he could not. Most certainly it was God's grace that allowed me to begin my grieving process for Phil over a year ago. Because he was sick for such a long time and I grieved so much during the illness I had time to prepare for his death. But I could do nothing ahead of time to prepare for what I feel now - his absence. I feel what I do now in each unique moment and before I could only imagine the potential of his absence. And my imagination fell far short of the reality that is life without Phil.
Saturday, November 12, 2011
The Veil is Thin
I'm finding it challenging to know where to start, what to write, what exactly it is I want to say today. So much has happened and, in true Libra fashion, I fluctuate between wanting to write it all down so I don't forget a moment of this strange state of being I find myself in, and wanting to just let it be ~ to continue as I've done over the last few days and lose touch with the passage of time and let it ride.
I'm laying on the bed in the back room with my sister Anita, and she is helping me sort out what is important for you to know about Phil and our family time. Hospice is in place, which means he sleeps a bit more comfortably in a hospital bed in our room, and I feel supported by an amazing team of caregivers. Every twelve hours is a new place in this journey. Phil is comfortable, not in pain, able to smile and comprehend the nuances of conversation, but is slow to respond and fading quietly.
Our living room is Ground Zero for us most of the day, with visitors and family coming in and out. I am trying to balance Phil's needs and my own, with those of my children and his loved ones who need to see and be with him. It is exhausting and we haven't quite gotten it right every day. I don't know how long we will be in this disrupted space but I do feel that God is holding us. I don't understand how people do this without Him. New mercies are needed every morning.
Last night I was reading about what it means to "die a good death." Throughout this illness, Phil has never complained, railed against God, or asked "why me?" How many of us could say that? I want to do whatever it takes to accompany him to his good death. Please pray that I can be faithful in the middle of the night when he needs me. And when I need patience and grace to lovingly sort out the kids' grief and emotional pain.
This is a sacred privilege for me to honor my husband as he leads us all to the Cross. We are catching glimpses of Jesus in these precarious days of uncertainty but we know for certain that all shall be well. Phil is surely dying but we know that this is ultimately his resurrection story.
I'm laying on the bed in the back room with my sister Anita, and she is helping me sort out what is important for you to know about Phil and our family time. Hospice is in place, which means he sleeps a bit more comfortably in a hospital bed in our room, and I feel supported by an amazing team of caregivers. Every twelve hours is a new place in this journey. Phil is comfortable, not in pain, able to smile and comprehend the nuances of conversation, but is slow to respond and fading quietly.
Our living room is Ground Zero for us most of the day, with visitors and family coming in and out. I am trying to balance Phil's needs and my own, with those of my children and his loved ones who need to see and be with him. It is exhausting and we haven't quite gotten it right every day. I don't know how long we will be in this disrupted space but I do feel that God is holding us. I don't understand how people do this without Him. New mercies are needed every morning.
Last night I was reading about what it means to "die a good death." Throughout this illness, Phil has never complained, railed against God, or asked "why me?" How many of us could say that? I want to do whatever it takes to accompany him to his good death. Please pray that I can be faithful in the middle of the night when he needs me. And when I need patience and grace to lovingly sort out the kids' grief and emotional pain.
This is a sacred privilege for me to honor my husband as he leads us all to the Cross. We are catching glimpses of Jesus in these precarious days of uncertainty but we know for certain that all shall be well. Phil is surely dying but we know that this is ultimately his resurrection story.
Tuesday, November 8, 2011
Update on Phil
Phil is growing ever more weak and fatigued and sleeping more hours of the day, a blessing in itself. We had a weekend of family and friends visiting and he was able to participate in that. It was incredibly taxing, however.
Yesterday with Dr. Kossman we learned his platelets (at 10K) are dangerously low and put him at risk for a spontaneous bleed so he decided to receive one last transfusion. This was no small decision since it meant spending the better part of the day in the hospital being admitted, typed and crossed then transfused only to go home and sleep for the rest of the day with little interaction. We also decided to begin hospice services. It is a huge relief for me to know that I will no longer be solely responsible for the decisions in the middle of the night and that I will have more help walking my children through this painful transition. As for Phil, his desire to die at home with us can now be made that much more comfortable and achievable. I can see in his entire body since making this decision, that he has begun to relax and let go of the fight. I am relieved for him.
Your comments, prayers and scriptures have been nothing short of manna for our weary souls. Thank you for continuing your vigil with us and for describing to us your love and experiences of and with Phil. My children especially will need to reflect on these stories and comments in the days, weeks and years to come.
Yesterday with Dr. Kossman we learned his platelets (at 10K) are dangerously low and put him at risk for a spontaneous bleed so he decided to receive one last transfusion. This was no small decision since it meant spending the better part of the day in the hospital being admitted, typed and crossed then transfused only to go home and sleep for the rest of the day with little interaction. We also decided to begin hospice services. It is a huge relief for me to know that I will no longer be solely responsible for the decisions in the middle of the night and that I will have more help walking my children through this painful transition. As for Phil, his desire to die at home with us can now be made that much more comfortable and achievable. I can see in his entire body since making this decision, that he has begun to relax and let go of the fight. I am relieved for him.
Your comments, prayers and scriptures have been nothing short of manna for our weary souls. Thank you for continuing your vigil with us and for describing to us your love and experiences of and with Phil. My children especially will need to reflect on these stories and comments in the days, weeks and years to come.
Thursday, November 3, 2011
Undaunted Courage
I felt badly this morning as I blew my hair dry and put on an outfit that seemed to match just a little too well. As I pulled on my good boots and got ready to go see Phil in the hospital I felt indulgent for looking so much better than I felt. For looking too nice. It felt so damned inappropriate because Phil is dying.
He is in renal failure, isn't making platelets or red cells and is not eating well. He can't tolerate anymore chemotherapy and has come to the end of his long journey. Valiance and courage continue to characterize his life and those of us gathered here are blessed to be alongside him as he faces the challenges of the coming days.
Pray for a peaceful passage for our Iron Man warrior, father, son, brother, husband and friend.
*please respect our family time as we draw together to love and support one another and refrain from phone calls. Email messages and comments are much appreciated
Cards and letters may be sent to:
1426 Lomita Road
El Cajon, CA 92020
He is in renal failure, isn't making platelets or red cells and is not eating well. He can't tolerate anymore chemotherapy and has come to the end of his long journey. Valiance and courage continue to characterize his life and those of us gathered here are blessed to be alongside him as he faces the challenges of the coming days.
Pray for a peaceful passage for our Iron Man warrior, father, son, brother, husband and friend.
*please respect our family time as we draw together to love and support one another and refrain from phone calls. Email messages and comments are much appreciated
Cards and letters may be sent to:
1426 Lomita Road
El Cajon, CA 92020
Saturday, June 25, 2011
Inward Bound
Sitting around with friends in college I heard legendary stories about this "life changing" program called Outward Bound. Many were the students who told of a cold night spent huddled under a bush or make-shift shelter, testing the limits of their physical and mental endurance in order to make it through their solo experience (24 hours spent alone in nature). It sounded both awesome and intimidating. I'm certain that if given the opportunity to experience Outward Bound back then, I wouldn't have chosen the journey. The idea of being completely by myself for 24 hours, let alone in the middle of nowhere, did not sound remotely appealing. A physical education major, I think I'd have been alright with the physical demands of the program. However, my inside world, although very familiar to me, was not a very stable nor well organized place at that time. I had a good idea of what I'd find if I had to go plumbing there for strength and resilience on a dark cold night during my solo experience and it wasn't comforting. The mental and spiritual test was what I feared and I didn't want to be pushed to see what I was made of - I already had an inclining and it wasn't pretty.
I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago. Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy. I no longer have an unstable, unorganized or un-examined inner life. Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey. In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.
Speaking of Phil's journey, there is news to share. He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways. He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea. He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff. Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain. During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest. This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was. An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.
Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband". I'm all too familiar with this drill. This happened the morning after the CT scan before I went in to see Phil. He reminded me again about the liter of fluid and the lymph node in Phil's chest. But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm. Ah shit. Not good. Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size. Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan. In other words, it grew quickly and right on the heels of very aggressive chemotherapy. Ah double shit. Not good at all.
Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil. It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched. He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up. While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way. To question the wisdom of His ways now would be folly.
Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend. So far so good. We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way). He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy. When we know something we will share it with you. Until then, please continue to cover Phil and our family in your generous prayers.
As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us. We're going deeper still.
Proverbs 19:21
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
I haven't thought about Outward Bound for years now and I outgrew the fear of how I'd perform long ago. Having experienced life's vicissitudes, I've built abundant inner resources, gleaned from the passage of time, the wisdom that comes from deep introspection and the benefit of psychotherapy. I no longer have an unstable, unorganized or un-examined inner life. Although there probably was a point in time where I might have loved the challenge of Outward Bound, it has long since passed and I don't feel that I've missed anything by not having gone on that journey. In point of fact, my inner life IS my life and now in this refining fire of Phil's cancer Inward Bound is the only journey I'm truly interested in.
Speaking of Phil's journey, there is news to share. He is recently home from his latest chemotherapy regimen and did very well with it; the best round so far in some ways. He tolerated the triple medication cocktail so well that he ate heartily and rarely had any nausea. He enjoyed visitors and walked the halls daily, keeping up his strength and maintaining his popularity with the staff. Prior to admission however he was noting some soreness in his left rib cage and fluctuating shoulder pain. During the hospital stay Dr. Kossman ordered a chest xray which showed Phil had another pleural effusion and there was a questionable area in the center of his chest. This could have been artifact from the pleural effusion but he needed a CT scan to find out what it really was. An Interventional Radiologist was on hand for the CT and drew 1 Liter of fluid off of Phil's lungs (that's a lot!) and a quick read showed a lymph node in the middle of his chest.
Now, it's never a good thing when Dr. Kossman calls me first thing in the morning and says he needs to talk to me about "what's going on with your husband". I'm all too familiar with this drill. This happened the morning after the CT scan before I went in to see Phil. He reminded me again about the liter of fluid and the lymph node in Phil's chest. But he went on to say that the fluid was all lymphocytes meaning that Phil's lymphoma was recurring and the lymph node in his chest measured 5 cm. Ah shit. Not good. Not what we were prepared for and yet, I think, we both knew deep inside that pleural effusions don't just keep recurring for NO reason, and certainly not effusions of that size. Later as Phil and I cried and talked about it together, we realized that the lymph node had grown since his last chemo treatment 9 weeks ago when he had developed the right sided effusion and had his last CT scan. In other words, it grew quickly and right on the heels of very aggressive chemotherapy. Ah double shit. Not good at all.
Well, that was a week ago and we've since celebrated my father's 80th birthday with my five siblings, and Father's Day as well with both he and Phil. It was a crusher of a weekend, celebrating my awesome dad and the life he's lived, the family he's raised and the lives he's touched. He played a huge role in raising my sister Terry's sons and seeing that documented in picture after picture was very special and yet full of conflicting emotions of grief, hope, awe, wonder, thanksgiving and also plenty of prayerful petition that Phil will live to see his kids grow up. While we do not know where God will take us from here we do know that He has laid a path in front of us and has walked with us every step of the way. To question the wisdom of His ways now would be folly.
Phil is in recovery from his current chemotherapy and will hopefully not need any transfusions over this weekend. So far so good. We will meet with Dr. Kossman Monday to recheck his counts and again on Friday (while we move into our new house by the way). He is going to be followed closely and Kossman will be culling through the literature to see where we go from here for the best treatment strategy. When we know something we will share it with you. Until then, please continue to cover Phil and our family in your generous prayers.
As for Phil, he says Inward Bound is where the real journey is, the journey to the center of who God made us. We're going deeper still.
Proverbs 19:21
Many are the plans in a man's heart, but it is the Lord's purpose that prevails.
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.
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