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

 

 

Ode to Brooke

Brooke has been amazing over these last 2+ months.  I cannot imagine this journey without her by my side, supporting and loving me while also holding and supporting our 3 precious children. It has been an extraordinary time. Cancer is unlike anything I have previously experienced. It has been trying and stressful on all of us in many different and unexpected ways. And in many respects our journey has just begun. The love and connection we share as a family is the foundation that holds us strong.

Recently as Brooke’s  birthday approached she was very clear, with me and her friends, that she wanted a simple and quiet day, no fanfare. We exchanged a few presents, and the kids made some really special cards. I decided to also mark all that is special about Brooke and honor her through the written word. This is not award winning verse by any means, yet I have tried to capture and share her unique essence. With love and gratitude…

Bright rays of light

warm as the suns glow

expanding to fill the space.

Radiant smile, sharing warmth and ease.

Musical laugh, disarming and opening,

offering others to feel their own joy.

Quick to care for all,

action and deed manifesting a hearts calling.

A balm for you, a gift too so many.

Mama lioness, soft and fierce,

nurturing with firm resolve.

Driven with spirit, yielding with love.

Strength, commitment, focus, integrity.

Love, sister, partner.

Nourish the circle, feel your light

Holding…deep vulnerability

I was a horrible mom last night. I went to bed with a sick stomach and heavy heart after yelling at the girls and getting upset with Miller. I literally couldn’t get out of my own way. I watched myself getting upset, at the time feeling so justified in my frustration and angst. The clothes all over the floor of every room, the mess in every corner, the lack of respect for me nor listening to a word I say – a nd yet, no one deserves to be yelled at. No child deserves to have their sweet innocence poisoned by a mother who is so tired and so scared. You see, I am holding. At times I am not sure all that I am holding, yet I catch myself with my shoulders practically touching my ear lobes. I am so tired, and truth be told, I am scared. So scared. I have been scared for weeks and weeks now. And I haven’t wanted to say it out loud or to anyone with too much emphasis. Andrew’s surgery was a success, and I am still scared. Andrew’s prognosis is good, and I am still scared.

 

I feel weak. I work hard each day to have perspective and believe me, I KNOW how lucky we are. I KNOW how fortunate we are that Andrew’s lung cancer was found incidentally, and as such, his survival rate is far greater than it would have been if it hadn’t been found so early. And I am truly grateful. Deeply grateful, in fact. And yet, for some reason, I still feel this deep underlying fear. I pray, I give of myself to others, I pray some more, and I am still scared. It doesn’t consume my waking hours, and yet it has exhausted me.

 

It was my birthday earlier this week, and my gift to myself? NO plans. NO commitments. NO obligations. As graciously and as gracefully as possible, I declined the amazing and generous offers from dear friends to celebrate me, nurture me, give to me. And I spent much of my birthday sleeping. I am truly tired. I have napped every day this week and gone to bed early each night. I can’t seem to get enough sleep. While Andrew needs very little physically from me now (he is more than capable of making his own food, has started to drive his car, can help with the dishes, folding laundry, etc), there is still so much “holding” for me to do. When I am not home with him, he is never far from my thoughts and heart. I worry about him. I question my ability to be his best possible partner during this time. I lack confidence in how to best help him bridge this time between diagnosis and the current stage of remission and the future, as a cancer survivor. Apparently, there is a real deal psychic “holding” that goes on, that is quite taxing. At least for me. I am humbled by this process. I am also embarrassed that it seems to take so much out of me. I would like to think and believe that the sheer magnitude of gratitude that I feel each day for Andrew’s incredible story and long-term prognosis would be enough to carry me and fill me up. Yet, I am tired. And I am still scared.

I adore this man. He is courageous and marvelous. He is smart and beautiful. And he feels a tremendous sense of responsibility to be given this new lease on life, this “second chance”. He does not take it lightly. Nor do I. Yet, it is exhausting. I do not say that with an ounce of complaint. I am grateful for this deep exhaustion. I am grateful for the opportunity to feel so deeply, and to also feel so alive with my fears. Yet, I am tired. And scared

I was a horrible mother last night. I woke up with a clear head this morning and started my apologies with Lang, who is our first to rise. We sat on the floor of the kitchen while our tea water boiled. We hugged and hugged, and I whispered in her ear. I apologized for being harsh. I apologized for not being stronger, for not knowing when to walk away to sit with my fears, rather than project them onto her. I thanked her for being such an incredible light and embodiment of joy and love and for gracing me with the honor of being her mother. I did the same with Chase when she got up. And I had some time with Miller later in the morning to express my apologies. Lang and Chase could barely recall what I was so apologetic about and yet they hugged me with incredible vigor and strength and Miller responded with deep emotions. We are all holding a lot right now. We are vulnerable. I am FAR from perfect, and yet I hope that I am learning and growing.

I pray to surrender more to the vulnerability and magnificence of this time. I pray for strength. I pray for understanding. I pray for wisdom in how to best support my precious Andrew. I pray for courage as we go forward in this lifetime as changed individuals, as a changed couple, and as a changed family. I pray for patience in my parenting. I pray that Andrew remains in remission for many, many years to come.

We go to Houston on Monday  morning. Its time for Andrew’s surgical month follow-up and while I have great faith and trust in the grand plan, I am also scared.

 

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy – the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

-Brene  Brown

 

Good night. Today was a much better day. I believe that tomorrow will be even better.

Love,
Brooke

A Cake to Cure Cancer

Often I am asked how our children are doing? How have they handled the whirlwind of the last 8 weeks? How has cancer impacted us as a family, or more specifically how has it manifested in each of our children?

We decided from the first day of my diagnosis that we would be transparent and open with our children. That we were going to include them in every step of the process. We realized that it would be difficult at times. We also knew that given their ages, 12, 9, and 7, that they had different capacities to engage in such a weighty topic. And as suspected they have each handled, or at times struggled, with the journey in their own unique ways.

What follows is a short piece written by our 9 year old daughter Chase as part of her school journal. I only recently discovered this entry when we were reviewing some of her work to date. I have written it exactly as it appears in her journal.

I feel so blessed and grateful to have this incredible family. My children are not only an inspiration and motivation, they are also unbelievable teachers and  a source of wisdom and light in our lives.

A cake to cure Cancer!

I baked a cake to cure cancer. The cake’s ingretients are, happieness, courage, health, medicine, water, sleep, family, cuddles, cofert, hugs, warmth, flowers, bucket full of love, Respect, Pillows, rest, Peace, a pinch of maple syrup, a cup of ginger ale, a sliver of sugar, a bit of popcorn, teddy bears, and kisses.

Like when a person goes to the doctors, and the doctor thells the person he/she has cancer and tells the person, you have cancer. Then says your options to get rid of it is you either have surgery or you have cemoetheripie or you can have a slice of cake with magicle ingretients. the doctor says the ingretients are happiness, courage, helth, medicine, water, sleep, family, cuddles, comphert, hugs, warmth, flowers, buckets full of love, Respect, Pillows, rest, peace, a pinch of maple syrup, a cup of ginger ale, a sliver fo sugar, a bit of popcorn, Teddy bears, and kisses!

Then the person asks what does this cake do. Exzactly what does this cake do? What this magicle cake does, is after you swallow all of it these migic ingredients especially Love and Family! Well what it does once you swallow the peice it forms into a big pumping heart makes the cancer die kicks the cancer out and then your all better. The End.

– By Chase

….love the teachers comments…”I think the world needs your cake!”

Image

 

“Dad…I am so glad you got cancer”

“Dad, don’t take this the wrong way, but I am so glad you got cancer.” He was really cute about it, clearly a little nervous, and yet intent to speak his truth.

You would not have expected that to light up a smile across my face, but that is exactly what happened. Another gift of this dreaded disease. Hard to imagine that they could be so abundant in just four weeks. You would be amazed. If I could spend more time writing they would come flowing out of me, it is stunning. A friend of ours, a therapist, said “cancer is the intimacy disease…if you let it become that for you and those around you.” That was an understatement.

So why did Miller’s comment make me so happy? A bit of a back story…Miller got into basketball last year when he was in the sixth grade. He was already tall for his age and he took and immediate liking to it. Good thing, over the last 8 months Miller went from being tall to being a giant. 6’1″, size 12 shoe, and 135lbs. And he just turned 12 on June 16th. This year he wanted to go for a spot in the “Gold Crown” competitive league. This was a tall order, pun intended, for a kid who had only played a year on a YMCA team. And, in fact, had never really had any serious coaching on his skills. I played hockey through my school years so I didn’t have a lot of basketball knowledge to offer up. Turns out I had something more valuable to offer, my time.

A few weeks ago we went to an open gym for one of the teams and I quickly saw the knowledge gap first hand. I took copious notes on all of the drills the coach was using. 2 days later we went to a different teams open gym and I learned even more drills. Later that evening Miller and I sat down and made a plan. Every day after that we went out and did drills for an hour or more. It was really cool to see how he started to progress in his skills, much quicker than I had anticipated. Yet the coolest part was the time he and I spent together, working towards a shared goal, talking, collaborating. Because of my medical leave, my schedule allowed me to be there every day after school to practice, and to attend each gym workout and team tryouts. I was fully engaged in the process and completely present in supporting his goals.

My cancer diagnosis has opened a window of time from my work. I have always thrown myself into my endeavors with passion, energy, and a focused desire to be the best I can be in any given situation. I love to learn, and I love to work with other smart people to create and collaborate. My professional and service oriented commitments have always been very fulfilling and rewarding for me and I have benefited from many great teachers, partners, co-workers, and staff. And I have spent enormous amounts of life energy and time in pursuit of my professional goals over the last 16 years.

My diagnosis has also opened a window of awareness and vulnerability, in my consciousness, and my heart. Spending time with my children and family has been an enormous gift. The impact of my presence and deeper involvement in the family cannot be understated. Both Brooke and I have observed and discussed numerous examples of this in the last month. It has been interesting for me to reflect upon this change. I have spent the last 16 years working hard to provide for my family, and like most working parents that means I am out the door by 8 am or earlier, and home by 6 pm or later. Add in some work email, etc. around the evening and weekend margins and that restricts my time to some fairly narrow windows. Given that I have three children, and selfishly want time to exercise and get some individual space, it does not leave much in the balance.

So what is the right balance?  Clearly there has to be a balance, work and income are necessary for economic and intellectual nourishment. Yet I have realized over the last 4 weeks in that there is absolutely no better return on my investment for my time than with my children. They are the true gift and I can imagine no better place to invest my creative and collaborative energies. Time is short and fleeting. The future for all of us is uncertain. 1 out of 6 people with my diagnosis are dead in 5 years or less. Much better odds than most with cancer, and yet still sobering for me to consider…especially given that until 4 weeks ago I maintained the popular illusion that I had many uninterrupted years stretching before me. What if I were not here? What if my time with my precious children and family is shorter than I imagined? How do I want my children to remember me? Rushing out the door each morning and returning late each evening, traveling, focused on the world beyond them. Or engaged in their lives, “on the court”, and focused on their passions and pursuits with equal investment as my own? A tricky equation to balance, comprised of different variables and choices, and no clear “right answer”.

For me I have a new awareness for the preciousness of life and time with my children and family. I don’t know what path lies ahead of me. I am focused on getting this cancer out and healing. I am told that it will be a pretty significant recovery. That is where I will be putting my energies and passions over the next 2 months. Healing myself and preparing for the next step in my life’s journey. And I am looking forward to many years ahead engaging and investing as much of my time in my children and my family as I am in my own pursuits and in the world beyond. I cannot imagine a better way to positively impact the world than to support my three incredible children in the development of their minds, bodies, and spirits.

Miller made the team.  A big accomplishment in a short period of time. In fact he has 1 more tryout for the top team and the coach is taking a serious look at bringing him on the 10 man squad. Amazing how much ground he has covered in a short period of time. Amazing the positive impact this has had on his attitude, confidence, and enthusiasm. I am so grateful to have had the time to support him on this journey. In a twisted sort of way I am thankful for the gift of cancer as well.

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you, yet they belong not to you.

You may give them your love but not your thoughts.

For they have their own thoughts.

You may house their bodies but not their sould,

For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.

…You are the bows from which your children as living arrows are sent forth.

– The Prophet, Kahlil Gibran