Shifting Time
June 24th, 2011
During treatment, we are thrust into an uninvited, relentless Present Tense. We put aside our plans and obligations and focus on our health. We take leaves from jobs, renegotiate our commitments, garner support from people who care about us.
The future becomes necessarily more tentative. You may not be there to meet it. Or maybe you will, but who knows in what condition. How will I feel next week? Tomorrow? An hour from now?
When you are healthy, it is easy to plan your life with some confidence. When you are ill, there is hesitation, particularly if you are used to being dependable.
Time changes shape. Horizons shorten. The Present Tense of crisis is fueled by adrenaline, colored by anxiety. There is so much to worry about. Health. Money. Health. The inevitable dramas with family and friends.
Health.
As if cancer was not enough strain, imagine throwing young children into that mix. Their needs are perpetual. They are, by design, dependent. This is their childhood.
Despite the insistent, unwelcomed Present, a mother makes an effort to create a semblance of normalcy and joy.
But the strain is always there. A child, naturally, wonders about the future. “When I get bigger…”A mother pulls back, reluctant to imagine a time that she may be robbed of sharing.
My family has been in this state of crisis. Like a person huddles over an injury to protect it from the world, we have been doubled over in the wake of my cancer. We have been wounded. The primary injury has been tended to, but the peripheral problems have only been uncovered, including this unrelenting sense of crisis.
In addition to the physical devastation of treatment, patients and their families must also contend with a new financial reality. On average, American cancer survivors pay $5,000 more a year in medical expenses than people who have not had cancer. That takes a lot of options off the table for the typical middle class family. Vacations go. Summer camp, music lessons –– winnowed down. That certainly has been our experience.
Last week, we got a reprieve. We participated in a beach retreat with a new non-profit called Little Pink Houses of Hope (LPHOH). Founder Jeanine Patten-Coble, herself a breast cancer survivor, recognized that women are not the only ones impacted by breast cancer. An entire family is affected.
LPHOH gave my family use of a beach house, donated by a couple in Kill Devil Hills, North Carolina. LPHOH hosted several families last week. All of us arrived at these homes, stocked with groceries, armed with gift certificates to local merchants and restaurants. Jeanine told us that her goal was to keep our wallets closed for the whole week. Just hearing those words brought our stress down a few notches.
Jeanine and the other “volunstars” provided us with a schedule of optional activities, from kayaking to jewelery making, all designed to give families quality time together. They wanted us to feel comfortable and cared for. Our challenge was to open ourselves up to receive.
It took us a few days before we realized just how tightly wound we were. You don’t realize you are hunched over until somebody lays a hand on you and reminds you how it feels to stand up straight. Midweek, the tight knot we were started to loosen a bit. We breathed more deeply. We smiled more easily.
We shifted into the pleasant Present Tense of a lovely vacation. The no-watches-needed Present Tense of an afternoon by the ocean . The wake-up-and-see kind, as you lazily peek back at the sun through the curtains and anticipate another adventure.
I was able to go on a Ferris wheel at a fair with my children, teaching them how to be brave.
I played in the waves with my son, sharing the awesomeness of the ocean.
I collected seashells with my girls, seeing beauty around us.
My husband sang as he kayaked down a river, while his punctured boat slowly sank, requiring the occasional bail out. A perfect metaphor for life with cancer, to be sure.
As we left the cocoon of the retreat, we came back restored, finding more joy in each other and our lives, together. Our time seems lighter, even in the ordinariness of our daily lives.
Along with seashells and sandy shoes, we have brought home a bit of the pleasant Present.
This entry was posted on Friday, June 24th, 2011 at 9:00 am and is filed under Survivorship, Treatment, Wellness. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Oh, Lani, just beautiful. With two young children myself, I know exactly what you mean. Cancer ruins everything! I’m so happy you had the chance to get away from it for a while and just enjoy your family. You can’t put a price on that and LPHOH sound wonderful. Lovely photos.
Lani, thank you for all your posts and shares. Your words are a spot on reminder of the basic human need to replenish when given an opportunity, fuel up on support, kindness, and fresh air, and remind ourselves of what is right in the world. I am misty on reading this last post and always glad to *reconnect*. Miss you mucho and hope you continue to find strength and kick cancer’s ass upside down. How do we get a LPHOH franchise in other destination cities, like, lets say LA? xoxo – lisa g, Maccabbia ’84
Lani, this is absolutely beautiful. Like goosebumps beautiful.
In 2009, after I finished most of my treatment and had only a few doses of herceptin left, we went to OBX and I had such a similar experience. It was the most special vacation I have taken. I swear, you’re never more relaxed then when you take that first exhale.
Katie
Lani,
You and your family deserve every second of your special vacation ! It was beautiful ! I also felt goosebumps and tears ! So proud of you !
May God’s blessing blanket you always.
Ann
Your words breathe lightness, joy, and fresh air! What a wonderful opportunity for you and your family.
so very happy that you and your family had this magical time together…blessings!
Lani,
That is wonderful and what beautiful photos! What a great non-profit!
It would be nice to be able to have a week of relaxation where cancer is not the focus of our lives – and as much as I try not to make it be that, we all know that’s very difficult. With weekly treatment now, no way can I go anywhere but I’m going to try to put some cash aside and maybe go to Disneyland next year and give up a week of treatment.
I’m SO glad you go this time with your children and am very thankful for the group that does this for you and other cancer survivors in your area!
Came across your site today – after 3 brain surgeries my neurosurgeon actually recommended a weekend trip for my family… I totally know what you mean about being hunched over without even knowing
So glad you got to enjoy your time with your family
This was so lovely to read. I can truly understand both the need and the reprieve you can get from being able to be “normal” and not in “cancer mode” for even just a bit.
It is wonderful you were able to get that time and those memories in.
Always the best of health and the happiest of luck.
So beautiful. I’m in tears. Thank you for sharing this.
xx
What a wonderful post, but at the same time it’s a vivid reminder about the heavy toll cancer takes. My kids are a bit older, but the strain is still very much felt. Cancer wounds a family, that sums it up pretty well. I am so glad you were able to get away and enjoy yourselves. I think the best part of vacations is that they are so restoring for all. Thanks for sharing. Great photos!
Ah, lovely. Tears pricked my eyes as I recall the times I too feel breathing becoming easier and a memory of how tense this is not just for me, but for those I love. Present Tense reminds us that the present is mysteriously not ordinary at all. Thanks you for the reminder. x
I’m so glad you were able to get away and take that trip. I am feeling this so much right now. Right in chemo and I never know how I’ll feel moment to moment. And I’m not supposed to go into crowds. So I feel like I don’t know if I can take them anywhere or not. And I hate to make plans because who knows how I’ll be feeling. My husband and my mom have been trying to pick up the slack, taking them out if they can. But darn-it, I can’t even plan next week, how can I plan for next year?
What an absolutely fabulous vacation! Teaching your children to be brave is an amazing privilege. I loved the kayaking picture, as all of our family loves to do that. It’s therapeutic–and fun!
Enjoy!
Jan
Lani, Cancer is a family disease, and it seems as though I’ve had it since I was 12 and my father was diagnosed. I read about your family time together, imagining how healing it would have been for my family to have had that time together. LPHOH is an organization we should shout about from the rooftops so we can see to it they get more funding to treat more families like yours.
Blessings,
Brenda
What a great post, you covered the sense of time so accurately. I never confirm any plans anymore because I just never know when I can make it or how I will feel.
That is such a great organization! The ability to touch individual lives in such a unique way is amazing.
I know it’s a whole year and more later, but this blog post is wonderful. I am so glad you had such a great holiday, and that I have experienced it again with you.
i’ll take your nice comments! thank you hester.