6 Months

Its absolutely amazing to me how fast time flies when you are having fun. Andrew is in Houston at MDAnderson again for his 6 month series of tests and scans, and I am at home holding down the fort and taking care of the kids and our zoo. To say that I felt absolutely sick to not leave the house with him at 4:05am this morning, is an understatement. Andrew is so strong, and he assured me (why the heck was he assuring ME?) that he would be fine on his own, and yet I feel strangely empty and scared tonight. And, yet, we both know and trust that his appointment with Dr. Swisher tomorrow will be cause for great celebration and a wonderful reminder of how fortunate and lucky we truly are.

The past 6 months have been a bit of a blur. Cancer is very strange that way. Time almost stands still at times, and yet when health returns, and normalcy appears, its easy to resume life as you knew it before and time begins to evaporate again. That said, its far too easy for me to talk about this, as I am NOT the one who has had cancer. I am NOT the one who has had massive thoracic surgery. I am NOT the one who has had part of his lung removed. I am NOT the one who has lost a father to the same cancer that I have had to fight. Its far too easy for me to talk about how the last 6 months have been. Quite frankly, its far too easy for me, as I am NOT the one fighting cancer. I am merely the spouse…

And, yet I will tell you that Andrew has been nothing short of amazing since his lung cancer diagnosis. He recovered from his surgery with such grace and such strength and as soon as he was able, he was walking the dogs, and hiking our local mountain, and then in short order, skiing at our local ski resort. And then before I knew it, he was skiing at altitude and pushing the limits of his lung capacity, and celebrating with quiet joy how far he had come in such a short time. All the while, feeling “different”, all the while knowing that his reality was forever changed. All the while, quietly aware that each day was a gift beyond anything he had ever been able to comprehend prior to last July.

Of course, we feel that tomorrow will bring nothing but great news. We have no reason to think otherwise, and yet cancer is this persistent shadow. Life goes on, and joy returns, and yet there is always this shadow. Sometimes its more noticeable, and sometimes, you can’t see it even if you try. Yet, its always there. A dull and sometimes even a dark shadow…

Just last week we lost a friend to cancer. A young father with an incredible zest and joy for life, and a very, very dear friend to two of our best friends. Why him? Why was this Steve’s story? Why is this Andrew’s story? Its been a horribly sad time to mourn the loss of Steve. And its also been another reminder of how fortunate we are…even if there is perhaps some guilt imbedded in our gratitude. Yet, our gratitude is DEEP. And we sincerely share in the collective grief for Steve’s passing.

So, I am here in Boulder, and Andrew is there in Houston. And I feel so far away from him, despite our consistent contact today. I know where he is. I can see it. I can feel it. I can smell it. And quite frankly, in all of MDA’s incredible amazingness  and magic, its a hard place to be, even worse alone. Cancer is not something I would wish on anyone, and I am also deeply grateful for our experience and journey with lung cancer, thus far. We are truly the lucky ones.

Love,

Brooke

 

 

Coming home…

I have not shared since returning to Boulder from Houston, almost three weeks ago. Our last few days in Houston found me with complete trail head fever. I absolutely couldn’t wait to get our family home to Boulder and the kids back to school, and to get Andrew in our own bed, and in our own home, eating our own food, etc. I was craving some exercise, something so important to me, yet not possible since arriving in Houston. I was yearning for some “normalcy”, even if that meant normalcy at home in Boulder with a husband recovering from a massive thoracic surgery. I was looking forward to engaging with my girlfriends, who complete my family circle in Boulder. I couldn’t wait to pick up our two dogs from the training kennel they were at, a place new to them. We arrived home to Boulder on a Tuesday evening and it was raining and quite chilly. It felt so good. I went to bed with a feeling of  incredible relief. Relieved to be home. Relieved to know that Wednesday would be a day for Andrew and I to sit at home alone, while the kids got back into the swing of things at school. And rain was in the forecast, which for Boulder, is literally unheard of. Because it so rarely rains, we so appreciate days to “stay in”.

On Wednesday morning, I almost skipped down the stairs giddy with excitement to be making breakfasts, packing lunches, and getting the kids off to school. And it was raining. I am ashamed to admit this now, yet I was so grateful for the cold, rainy day. We sat on the couch for much of the day, watching tv, talking, listening to the rain. The rain felt so foreign, yet so welcome. I had a few friends comment on just how much the rain was our perfect homecoming. Of course, no one could imagine what the next 4 days would bring.

The calm and cozy quiet of our first day home came to an abrupt halt at 12:30am on Thursday morning. We all went to bed on Wednesday night to the sound of pounding rain. Again, never thinking a thing about it, other than how strange it was, yet also how welcome it was. The clap of thunder that struck our home at 12:30 was unlike any thunder I have ever experienced. We BOTH jolted upright, looked at each other and knew something wasn’t right. The storm cell was stuck overhead and the thunder and lightning were coming repeatedly every few seconds. The rain was hammering the house. I checked on the kids and they were fine. Chase was the only one that awoke, yet it was slight and she went right back to sleep. Soon enough, adrenaline overcame Andrew and he was determined to drive the neighborhood to make sure the creeks weren’t rising and to check out where all the sirens were coming from. I got online and social media was already blowing up. Then the texts started to roll in from friends who were also awake in their beds, wondering what was going on. While no one could predict what was already happening, and what was about to take over our precious town, it was as if we all DID know that this was just the beginning of a time that we would really come together, and really need each other. While Andrew was out (he definitely SHOULD NOT have been driving a car, yet I won’t focus on that discretion), he was calling and letting me know what he was seeing. It wasn’t good. And I was sharing with him what I was reading online and it also wasn’t good. School was cancelled by 6am and our relaxing homecoming was over. Thursday, Thursday night, Friday and Friday night were FAR from relaxing, nor nurturing, nor healing. Now our family medical crisis, had quickly merged into a community natural disaster crisis. The Boulder Flood of 2013 was truly the most remarkable community experience I have ever lived through…the good and the bad. Nursing a husband recovering from lung cancer surgery only served to heighten the experience.

Our street was one of the particularly hard hit city streets. At times, we literally had a white water river coursing down the street. No pavement could be seen. Our neighbors were outside around the clock building barriers, placing sandbags, and shoveling mud in efforts to save each other’s homes. One home on our street was a complete loss and became a spectacle for all the news outlets. We spent our days, working to keep the rising water and mud from flooding our home, keeping the kids busy, helping neighbors and friends who were in far worse shape than us, and feeling so grateful for our house that sits up a little higher than some others. There was plenty of drama and intensity in these days, and a lot of sadness. There was also such incredible generosity of spirit and kindness. People were out in the droves helping people they did not know. We got hit with a flow of mud that literally landed in our driveway and yard and one morning I caught three of our dear friends quietly shoveling and moving the mud as best they could….they were here for hours, in their boots and rain coats. Angels. True angels. Despite the destruction and devastation in Boulder, we also had home-made loving dinners delivered each night from our incredible community of friends. Andrew struggled to be so immobile during this time of incredible physical need and support, yet his one stretch of trying to shovel mud, put him back significantly in terms of his healing and recovery. I worked hard to “represent” for our family, in the absence of Andrew’s ability to help.

Now, despite the mud and mess that still consumes our part of town, life has certainly resumed routine and normalcy. School is in session, sports are on, Andrew is recovering a little bit more and more each day, and I am just beginning to feel some spaciousness. However, I would be lying if I said I wasn’t exhausted to the core. My cells even feel tired, and yet I am lifted each day by the courage and determination of my dear Andrew, and the resilience of our precious children, and the beautiful spirit of our blessed community of Boulder. I know that there is SO much learning going on each and every day — our family is certainly not the same family that we were in late July, as we were preparing to head east for my oldest sister’s 50th birthday celebration and family visit (a trip I still feel sadness about missing). I have faith that the difference is only positive, and from this place, we are stronger in our faith and dedication to each other, to our family and to God.

Love,

Brooke

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.”

-Haruki Murakami

Step by step…

Coming home has been much more of a challenge that I had anticipated or planned for. The last 7 weeks have been a series of distinct phases.

  • The shock of the  diagnosis.
  • A frenzy of effort to get into MD Anderson and with the most experienced surgeon possible.
  • 3+ weeks of waiting and preparing for surgery and fighting one of my worst sinus infections in years.
  • Traveling back to Houston, pre-op and day of surgery.
  • Post op, 4 days in the hospital that felt like 8.
  • And then 4 more days in the hotel, a relative purgatory surrounded by comfort and yet never able to really get comfortable.

I had been so focused on preparing for the surgery, and then working hard to get released as early as possible, that I had not thought much of how it would feel to be home. You would think that it would be such a relief, to finally be in my own home, sleep in my own bed, etc. Yet it was deeply unsettling. All so familiar, yet everything had changed.

Struggling with conflicting emotions. Want to get out and engage. Tired and want to just sit. Want to visit and meet with people. Want to just be quiet and with family. Want to get out and “exercise”. Want to sleep and rest. Want to get back into the work flow. Want to go on retreat.

Feeling restless, and then go on a walk and realize how tired I am, how depleted my energy reserves are. I have often heard that it is common to feel some depression, and yet I don’t feel depressed. However, if you talk with Brooke, I think she would say that at times I certainly seem down and subdued. Sometimes without warning I feel cranky and irritable. I am sick of sitting in the house all day everyday, and yet I don’t really feel like doing much else.

I am not the best patient. Ready to be done with all this “cancer” crap. And yet settling in that I am never going to be fully done with it. I have been researching 5 year survival rates for lung cancer, more on that in another post, but suffice it to say that I am just starting my journey.

Feel so many questions hanging over me and so few answers coming through. So I have been given a gift of life, a get out of jail free card. Feel a pressure to make something out of this reprieve, to honor the gift. And have some thoughts and ideas…yet it would be so simple if this had never happened. I look around my community and sometimes find myself yearning to go back to 3 months ago…ignorance is bliss.

It is often said that you really appreciate what you have…once it is taken away from you…Certainly I appreciate the stability and predictability of the life I had. Everything was preceding on plan. Loving family, check. Healthy kids, check. Professional growth and opportunity, check. All of our needs and wants covered, check. Financially ok, check. My only real lament was the desire to have more time with family, in nature, and in my spiritual and service pursuits. Of course I am not alone in that desire.

And while I was restless about certain things, or felt I wanted this or that in different aspects of my life, I had it pretty good. Better than perhaps I realized. I looked into the future and could see a vision for what lay ahead, excited for each step in the journey. Now I feel like I have been knocked off of my safe trajectory, infused with a dose of uncertainty. And as I sit with limited energy, and continue my healing, I watch my family and the world swirl around me, I am uncertain of what comes next.

Doing my best to stay present in the moment, focus on my healing.  I felt like I bounced back quickly in the hospital, yet now I am humbled at how slow this part of the recovery is. The left side of my chest and rib cage is still numb and as it is waking the nerves are tingling and sensitive. Daily I am finding and unwinding secondary and tertiary tweaks in my muscles and joints. And as of late I have been having bummer headaches, light headed and fuzzy. And to date I still have not traveled more than a few blocks from our house.

I need to continue to be patient. I need to stay focused on the present. Step by step, day by day…

We join spokes together in a wheel,

but it is the center hole

that makes the wagon move.

We shape clay into a pot,

but it is the emptiness inside

that holds whatever we want.

We hammer wood for a house,

but it is the inner space

that makes it liveable.

We work with being,

but non-being is what we use.

– tao te ching

Chase’s List

Chase's List

Prior to surgery Chase (our 9 year old daughter) and I were talking one night. She told me she was scared and felt conflicted with so many different emotions. I encouraged her to write all her different feelings down and express herself. Here’s the list, sums it up pretty well…

Spirit Flow

Four separate, one whole.

Spirit, intellect, emotion, body.

 

Conflicting in opposition, tempted with desire, and shackled with attachment.

Wanting stoked in the cultural hearth of consumption.

Mental rationales, comforting and soothing, the restless spirit stirring.

Emotional juice, natural sweetness; thin of skin, a soft fruit easily bruised.

Corporal temples on fleeting foundations, vulnerable to the arc of time.

 

Intangible spirit, being and non-being, flowing and connecting.

The water is clear even while the silt swirls.

Coming home…Boulder’s 100 year flood

Coming home has been much harder than I imagined. In many ways the last 7 days have been the hardest, to date, of this ordeal. It has been 7 weeks since this journey began. 2 weeks to the day since the surgery. Upon reflection I did not imagine this would be the hard part, and yet physically, emotionally, and spiritually the last 7 days have tested me in a much more subtle and insidious manner than all of the other trials to date. Of course arriving back just as the 100 year flood was starting certainly did not help…

We arrived home late Tuesday evening on the 10th. We woke Wednesday morning to a cloudy and grey day. At first it seemed to be a perfect setting. Cozy and subdued, perfect for taking it easy and beginning the healing. I thought of it as a bit of a gift. Unlike  usual September days in Boulder it was not 87 degrees, beautiful, and sunny. I did not have to confront my physical infirmaties head on with the endless legions of cyclists passing our house, runners on every road, and hikers in all of the mountain parks. Brooke purposely kept her schedule open to be with me. So we dropped the kiddos back at school, after a 7 day hiatus, and came home, made some tea, got cozie and watched a movie.

Wednesday night around 12:15 Brooke and I awoke, as did most of Boulder, to the most amazing clap of thunder and immediate bolt/flash of lightening I have ever seen. I sleep like a rock, difficult to wake. When I heard this boom both Brooke and I bolted straight up, our hearts racing. You could feel the electrical charge permeating the air and our bodies. I sat and listened to the storm for a while. I quickly realized that in 15 years in Boulder I had never heard so much rain fall so quickly. As I listened it became increasingly clear to me that this was going to be trouble. And considering our house, like many parts of Boulder, lay in the 100 year flood plane, I felt a growing cause for concern. I climbed out of bed, and over Brooke’s protests, and the fog of pain killers, I went and got dressed, grabbed my rain jacket and a high powered flashlight and told Brooke that I was going to go and quickly scout the surrounding neighborhood to get a sense of what was going on.

As I left the drive I could barely see out my windshield the rain was falling so hard. I did my first pass around the area and could see that the roads and drains were already at capacity. 20 minutes later I almost went home when I saw the first real surge go down a major street. Brooke called and I gave her the update, and while on the phone I watched the situation change before my eyes. In less than 40 minutes the standing water was pooling so quickly that intersections I had just been through 20 minutes earlier were rapidly becoming impassable. Emergency vehicles, police, and fire trucks were starting to show up everywhere. I was driving a high clearance off road jeep with big tires and a lifted suspension…and the water was coming up to my headlights!

I went to check on the nearby creek bed, usually dry, and as I came close I saw another truck try to push through and get stuck, I reversed back out quickly and turned around. We did not sleep much that night. Two hours later we had a river flowing around our house, front and back, and a 3″+ lake growing behind our damned fence. All of our mulch, playground fill, and a rapidly growing mud stream, were preventing the water from flowing and slowly working its way up to our foundation line. I waded out into thigh deep water and started to clear the debris from the mesh fence, careful to only use my right arm and not lift anything over 10lbs. 45 minutes later the majority of the water drained and we dodged our first bullet of the flood.

The next 48 hours were a blur. The heavy rains continued, and the waters began to rise. The 100 year flood was announced and as we went into Thursday night a flooded first floor seemed like a very real possibility. Our section of North Boulder, and our street in particular became a serious battleground where many were fighting to save their homes from a continually growing river. We had whitewater rapids in the middle of our street on Thursday night.

So two days back, a natural disaster is declared, and I am incapable of doing much at all. Wednesday night and Thursday I already felt bad that I could not assist in the community and help all those around us who were in need. By Thursday night it looked as if we might not make it through the evening unscathed, and there was little to nothing I could do. The first floor of our house if filled with 200-300 year old antiques that we inherited when my mother died 3 years earlier. And if the water rose I was not going to be able to move them to safety. In light of the bigger picture, and the incredible loss of so many homes and even whole communities, like Lyons CO, losing some antiques would have been minor in comparison. And thankfully we received more blessings, our berms held, and only our crawl space took on 1.5′ of water. We were lucky again.

Yet the reality was not the potential loss of material possessions. The hard reality to accept was that I was in no position to help my family. God help us if it got so bad we had to evacuate. Instead of being the man of the house and protecting my family I was a physically lame dependent and that left Brooke as the only able adult in the house. I was directly confronted with, forced to accept, and in fact had to surrender to, my vulnerability. I did my best, and it did not sit well with me. In fact it took it’s toll. I did too much physically, and emotionally I was wrung out, neither of which our positive contributors to my healing. Another lesson in impermanence and letting go.

As the rains ended and the water subsided we learned of so many in our community who have suffered mightily from this disaster. From flooded basements to complete loss of homes thousands were impacted. Our hearts go out to all those struggling to put the pieces back together.

In the vein of “going and extra mile”, Brooke and several local women have started a collection of clothes for donation. In just a few days we are close to filling one of our garage bays. It is uplifting to see the community generosity and support from so many. Brooke and team have found 16 families who lost everything and they will come by this weekend to “shop” among the many goods we have collected. The remainder will be donated locally to the flood relief effort. Just one of many examples of members of the community coming together in support of each other, the subtle blessings of hardships.

Love is the Flowing, the Outpouring, the Rendering from the Heart and Soul of Emotional Goodness to Yourself First – and then to Others in Your Life.

– The Hoffman Institute

 

 

Narco dreams

Nighttime is an especially odd time in hospitals. I had forgotten. The first night I was too full of meds and zoned out to care.

Everyone is gone. I have no movement and am trapped in bed, a perfusion of wires and tubes extending from both sides of my body. My “totem” pole to which I am attached through multiple connections is beeping and blinking, managing timed releases of meds. My Fentanyl dose regulator among them. Fentanyl has been my savior in the last 24 hours after I was taken off of the morphine based drugs which do not agree with me. The pain button, which delivers a dose of Fentanyl when I push it, lays across my lap. A safety blanket always within reach. I am trapped in a room, trapped in a bed, locked into a limited range of movement.

And now it is time to sleep…my bed vibrates every few minutes as the mattress rolls to keep my circulation moving. The room is filled with the blue and yellow hue of the monitors. Slowly I drift off to sleep from exhaustion and pain meds. I am determined to get a good nights sleep, no easy task in a hospital. I know first hand that sleep is one of the best medicines for me.

The dreams come quickly. I am in a variety of settings, all very different from where my actual body is. I stir and wake occasionally to find myself back in this sterile technology enabled room. Locked in position in my vibrating bed. Several times during the night I need to relieve myself but I cannot get up because of all of my attachments. I fumble about to find the urinal and move the tubes and wires aside. Always hesitant, a deep seeded resistance probably born from a 5 year olds fear of wetting the bed, that hazy dream state…what is really happening? A deep seeded dread of fumbling the task in some fashion and then creating an incredible mess that would be not only discomforting but also ruin any chance of a good nights sleep.

And somewhere along the way in this tumultuous night I am visited by the narco dreams. Dreams I have had at least once before, perhaps more. They come to me always when I am struggling in a hospital room trying to sleep with narcotics flowing through my veins. My first memory of them was when I was 18. I knew right away last night when it began. I had been there before. Like the replay of a movie you don’t want to see in an empty and seedy theater. It is dark, edgy, unsettling. I am not sure I could describe it if I tried yet it is familiar. I imagine it similar to traveling through Dante’s rings of hell, I felt sadness, fear, pain, human suffering. It was cold and harsh, it was not welcoming. it was deeply unsettling. I woke with the pained feeling in my body and the residue of fear tinging my mouth.

Another day has passed, better on many fronts and yet also filled with some challenges and more physical pain. Overall though a day of good progress. I will leave that for another post. I am getting ready for another night of sleep. I can move around tonight. The chest tube is out and the totem pole sits idly and silently in the corner. The Fentanyl is gone. My meds down to just a few. Once again I hope for a good nights sleep. And tonight I pray for no more narco dreams. I hope that last night was the last night of my life I will revisit that dream.

I wonder what that space is? Is it my sub-conscious processing the trauma? It felt like a journey in another world, an inhospitable place I would never wish on anyone. It clearly seems associated with trauma and powerful narcotics…a place I hope I never have to see again in my life. I wonder how many others have struggled with their own narco dreams as they work hard to recover from major traumatic surgery? I hope I am alone in that journey yet I am certain that is not the case. I watch so many here coping with so many challenges and fighting so hard. A testament to the human spirit in the face of life threatening illness. I feel so much compassion and empathy for the suffering of all those I see around me. I celebrate their courage and strength to push on in the face of adversity even when the odds are not always in their favor. And yet I have met so many recently who are doing just that, pushing on and not giving up. Facing the challenges every day. It is awe inspiring, and my heart is filled with compassion for all of us as we venture forth through this human experience.

I looking forward to drifting off tonight and having a peaceful sleep.