Gifts of Spirit

On a recent Sunday, I was moved by this reading:

1 COR 12:4-11

Brothers and sisters:

There are different kinds of spiritual gifts but the same Spirit;
there are different forms of service but the same Lord;
there are different workings but the same God
who produces all of them in everyone.

To each individual the manifestation of the Spirit
is given for some benefit.

To one is given through the Spirit the expression of wisdom;
to another, the expression of knowledge according to the same Spirit;
to another, faith by the same Spirit;
to another, gifts of healing by the one Spirit;
to another, mighty deeds;
to another, prophecy;
to another, discernment of spirits;
to another, varieties of tongues;
to another, interpretation of tongues.

But one and the same Spirit produces all of these,
distributing them individually to each person as he wishes.

When I learned that I needed to do chemotherapy, people who have traveled this road told me that I would need help. What kind of help? No one could say.

So in my fantasy world, I imagined teachers who were super compassionate with our children, or specific friends who would step in to provide logistical or emotional support.

Like most (if not all) of my fantasies, it bore no relation to reality. Teachers did their best but were not compassionate in the super-human way that I envisioned. The friends who I thought would be my rock either disappeared or needed more support than I did. Sometimes I felt disappointed or let down that people were not acting according to my expectations.

Fortunately, I was so ripped apart that I could not possibly direct anything in my life toward the way I thought it “should be.” As a result, I was wide open to anything. And people, amazingly, stepped into those openings in our lives in ways I would never have envisioned or directed on my own.

Friends, who I never knew could cook, crafted amazing meals and drove (sometimes long distances) to deliver them. Others, who lead completely booked lives, offered to drive me to appointments or chauffeur my children hither and yon. Old friends call, text, email or show up at the just the right time, and continue to include us in social invitations. Although I felt like a lost cause and not worthy of new friendships, some of my most treasured friends today are the ones who stepped into our lives after my diagnosis, who even visit me at home, encourage me to try new things, and lift me with their energy. The fact that they befriended someone who thought she was on her way out the door of this life constantly reminds me that life starts new every single minute.

People have done things for us that I never imagined we would need or want, but have made our lives infinitely better and our foundation more stable. They helped us to grow.

So when I read this part of Corinthians, all those people flooded into my heart. At some point long ago, I would have assumed that one action would be more helpful or important than another. But as time progressed, each action of our friends and family felt like the perfect workings of God through that individual. Gifts all, given and openly shared. Each unique, and each filled with Spirit.

With gratitude and love,
Marie

 

 

 

Living your best life

This recent blog post by my friend Tom powerfully describes one of the ways to “beat cancer.”

More than One Way to Beat Cancer: David Bowie 1947-2016

While I suggest you click on the link to get the full impact, in case you don’t, I want to highlight the two paragraphs below (from the blog):

Regardless of whether you are a fan of David Bowie’s music or not – this is an incredible act of beating cancer.  David Bowie used his cancer as a creative force channeled through his lifelong artistic vision.  He turned his death from cancer into yet another work of art, to spring onto an unsuspecting world like so many of his other career milestones throughout his life.  David Bowie’s career was one of constant reinvention, often in surprising and unsuspected ways.  This final transformation to the afterlife was his final signature artistic event.  An artist dying on his own terms, in a way that celebrated his own unique vision of life.  It was the furthest thing from being “beaten by cancer”.

Not all of us cancer survivors are international music superstars.  But we can take inspiration from David Bowie.  I hope as many of us as possible can be medically cured.  For those that can’t, we can beat cancer in many other ways.  By not allowing it to negatively change us.  To keep living the best life we can, on our own terms, for as physically long as we can.

Me again. Keep living your best life. Now.

And if you are part of the CRC crowd, Tom’s blog posts are a fantastic resource, so do check those out.

Sending love to you.
Marie

 

The skinny branches

Our second-story bedroom window looks out at a group of deciduous trees. (I’ll post a pic on-line at some point…)

Now that the leaves have fallen, I pass the time in bed by watching the squirrels run across the branches. The branches sway and the squirrel sometimes pauses. But I’m constantly awed at the ability of the squirrels to stay balanced on such skinny limbs, and the ability of the branches to stay strong and hold the squirrel.

This season, we’ve had many turkeys in our neighborhood. Up close, they are much larger than I imagined. From our kitchen window, I can see them nibbling on the kale and chard in our planter:

Turkeys eating kale and chard

The other day, I noticed a group of turkeys at our neighbor’s house and was amazed to see them walk across the top of on a fence.

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And then, I saw one nesting in a tree!

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Larger and heavier than a squirrel, I was even more in awe of their ability to balance, and of the tree’s ability to hold them.

I recently received the results of my CT scan, and was thrilled to hear that everything looks stable. I know that I am lucky to be alive this far out from my initial diagnosis, and at this time of year, I think back to the time I was initially diagnosed.

For me, the roughly 8 weeks between my diagnosis and start of chemo was unsettling (to say the least). It felt like I was facing a death sentence and unable to do anything about it.

During this time, though, one of my friends sent an article to me about a scientist named Stephen Jay Gould.

Stephen Jay Gould was a professor of zoology at Harvard University, and a specialist in the theory of evolution. In July 1982, at the age of 40, he was diagnosed with mesothelioma, a rare and incurable cancer, with a median survival time of eight months after diagnosis.

The distribution curve looks like this (adapted from the graph on page 12 of the excellent book Anticancer by David Servan-Schreiber):

This meant that half of the population diagnosed with mesothelioma died before eight months.

“But the other half, on the right, naturally spreads out beyond eight months, and the curve … always has a long tail that can extend to a considerable length of time.  … Stephen Jay Gould died twenty years later of another disease.”

He figured that someone’s got to be on that skinny end. It might as well be him.

I decided to adopt his mindset, and while I have wobbled on those skinny branches from time to time, I’m gratefully still here.

The squirrels and the turkeys remind me that although it might look crazy and impossible to balance on those skinny branches, they do it. They inspire me.

And it occurs to me, frequently, that you are helping to keep those branches strong, and to remind me that sometimes, they sway in the wind but it is all good. Thank you.

With love and gratitude,
Marie

 

Now is the time

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When we got a piano, my grandfather asked me when I would start taking lessons.

“I’m not,” I told him.

“Oh, you are playing around on it then?” he asked.

“No. We got it for the kids.”

“And you aren’t learning to play?”

Though I have always wanted to learn to play, it just felt like an insurmountable thing to learn. We had one young son and were hoping for another. I had left my job and was struggling with forming a new identity. (“Keeping house” is not my forte.) I didn’t feel like I had the time for the luxury of piano lessons.

However, my grandfather was truly puzzled by why I wouldn’t take advantage of an opportunity, in my own home, to learn something new.

————-

As a child, I was deathly afraid of the water and, despite sporadic lessons, didn’t learn to swim. When I was older, there was never a good time to learn to swim – too embarrassing to let anyone know, too inconvenient to get to lessons, etc.

I spent a lot of energy avoiding water-based activities. For example, I wanted to take a spring break trip to Florida with my friends, but panicked each time someone suggested renting a boat, going water skiing, or doing any water-based activity. Could I fake my way through? Or should I feign disinterest, stay back and read a book? When I started dating my husband, he loved going to Bermuda. When he invited me along, of course I jumped at the opportunity. We went boating and snorkeling and played in the waves, though I was often nervous that I would have some swimming mishap or die faking it.

In my mid-thirties, it was time, not only to conquer my fear, but also to live up to this glamorous image I held of myself possibly jumping off a boat into a lake, with the sun shining in the background…When I could finally swim comfortably, my husband booked a trip to Anguilla for us and some friends.

When we left for Anguilla, I was three months pregnant with twins. But the pregnancy was troubled from the start and, shortly after we arrived on the island, I miscarried. We called my doctor, who said, “Well, in case you didn’t actually miscarry, stay away from alcohol. And if you did miscarry, you shouldn’t have sex or go in the water because you could get an infection.”

I wondered what he does for fun on vacation. But mostly, I couldn’t believe I finally learned to swim and was surrounded by water, but I couldn’t go in!

That was over a decade ago. Now I am dealing with tumors and one of them seems to have ripped open my belly button. With an open wound that is taking its time to heal, I again cannot go into the water for fear of infection. I watch from the sidelines and take photos while the kids play in the ocean and the pool. Or I hang back and read a book or simply enjoy the sunshine.

I’m not complaining. I know that I am lucky to be enjoying some lovely weather and beautiful surroundings with my family. I am lucky to be able to travel at all. But I also finally realize that maybe I should take advantage of the opportunities in front of me at the time rather than assume they will always be available. Because the thing that I am not able to do inevitably becomes the thing I most want to do.

I continue to busy with the kids, chemo, energetic healing, writing, cooking, keeping the house somewhat organized (always the house), but maybe it is time for piano lessons?

Love,
Marie

Empowering ourselves

We deeply appreciate all the help that you give us. Meals, visits, rides, play dates, cards, activities, being lifted through your prayers and positive thoughts – All these areas where we need help and some where we cannot begin to handle by ourselves.

I know that we aren’t the only ones going through difficult changes. A friend of mine is getting a divorce. She is in the middle of redecorating her condo so that it doesn’t feel like it did when she was married. Her business is suddenly booming and she handling the legal details on her own. While this keeps her busy, she missed having her husband for both emotional and practical support.

But then, after a particularly busy day of running her business and meeting with lawyers, she realized that, though she was tired, she was also energized. By doing all the things she needed to do to take care of her life, she felt strong and empowered, and emotionally on a new level.

I could relate. Though the chemo drugs knock me down, I feel fortunate to get back up again. Often, it is slow return to life, and I don’t feel like doing much. But I find that if I do little things as soon as I can – take a shower, get my own glass of water, eat – then, gradually, I can do more and more. I notice that the more I do to take care of myself and my family, the better I feel, not just physically but about myself and my life.

Rather than a hassle, it is empowering.

For example, I love cooking. Cooking isn’t just one step: It includes planning and shopping and prepping and cooking. It involves managing the timing of the various parts of the meal as well as setting the table and serving the meal. And, inevitably, cleaning up.

Another example on the other end of the spectrum: As anyone who has been to my house knows, I am not the best at managing clutter. It feels like a chore, drains my energy, and is last on my list of things to do. But now I realize that having the energy and focus to go through the clutter (and essentially move it around) is a blessing.

I hope that you feel empowered as you go through your day, managing your life and contributing to the lives of those you love, one step at a time. And from those of us who receive your help when we need it: Thank you.

Love and blessings,
Marie

Change in Plans

Normally, I get my CT scans done at Dana Farber, but today’s scan was scheduled at a suburban location of Brigham and Women’s Hospital. I was to arrive at 8:30 a.m.

As scan locations go, it was actually perfect. It was close to my son’s school, so I could drop him off with a comfortable amount of time arrive for the scan prep. The building was easy to find and had ample parking. Walking in, the lobby was bright, the signs were clear, the halls were uncrowded.

When I entered the waiting area for the scan room, one other patient was calmly waiting in a seat. They had two people available for check-in. Both chatted in a friendly, welcoming way.

I decided that I would ALWAYS come here. Boston’s normally packed waiting room was filled with frenzy and anxiety. This place was calm and the air felt clean.

I filled out the form they handed to me….it was a different form than the one in Boston, but the questions were similar enough. One stood out, though: Are your veins difficult to access?

Since mine are, I really appreciated that question. To have any hope of finding a vein, I needed to be well-hydrated, which I was not. My veins roll, so the needle has trouble going in and they need to fish or re-stick. If and when they do get in, the valves are close together, so they typically don’t get a return and need to try again. All this results in huge blood bubbles under my skin and black and blue on top of my skin that doesn’t heal for a week or me.

I used to be polite and say okay. I didn’t want to hurt their feelings, and I wanted to be open to the chance that it might work. But they always gave up and said I needed an IV nurse, and I always arrived home with bruises. So now I know.

I told the nice nurse that I needed to use my port. She pointed to a vein on the back of my hand that looked good, but I know that vein is just a tease – it looks attainable but then rejects the stick as soon as they jab me.

No. I can come back another time.

She left and returned 10 minutes later. She said that she checked the schedules at all the locations where they have an IV nurse and they are full.

I can come another day.

They found an appointment for me at 4 p.m. today in Boston and verified that an IV nurse would still be there. So, I returned home to eat before I have to fast again, write this little note to you to ask you to continue to send good energy this way, and then will prepare to arrive in Boston at 2:30 (to allow time to do the port access and drink the drink).

I’m actually pretty calm about all this – the place felt too good to be true! It’s a bummer to lose this whole day to the scan, but that is the way it is going to go today. The primary bummer is that I repeatedly assured my son that I would pick him up from school, which I can no longer do. One by one, in his world, I am becoming the Queen of Broken Promises and Disappointments.

Thanks so much for your support. I hope the logistics of your day are much smoother, or, if there is a glitch, it is for the better!

Love,
Marie

A week in the life

At the start of my most recent chemo week, I looked ahead at the schedule. On Monday, my husband would be leaving for a four-day conference on the other side of the country. On Tuesday, I would start chemo.

This meant that my husband would be gone from Monday through late Thursday, and I would be home but physically and emotionally unavailable to the kids from Tuesday through Thursday or Friday (depending on how the week went).

Fortunately, we have a fabulous au pair, but my kids are at an age where they simply cannot go for 3-4 days without at least one parent on board, especially when one is sick. Their emotional bank risked being drained.

Alarm bells ringing in my head, I alerted the school and tutors. While they are all fabulous, none are or should expected to be a parent figure, but I knew they would do what they could.

So, on Monday, off goes my husband to his conference. On Tuesday, off I go to chemo.

As chemo weeks go, my treatment proceeded smoothly. Well, other than one glitch: I showed up at Dana Farber only to learn that I wasn’t actually scheduled for chemo. Part of me wanted to say “Great!” and run home, but I stayed put and they managed to find a slot for me.

Then I went home with my little “to go” bag of chemo pumping itself into my port, and I planted myself in my bed for the next few days.

Monday, Tuesday and Wednesday seemed to go fine. Everyone got to their scheduled classes, homework was completed and outside activities were attended.

However, on Thursday, one of the boys got into “trouble” at school. He works hard to appropriately manage his energy during the school day, but on that Thursday, he had few inner resources remaining to control his giggles. His behavior disrupted the class and needed to be addressed. We were grateful that the school handled it well, but, especially because he works hard on this, he felt horrible about himself and his life on many levels. He felt like he failed. Although I tried (pathetically, from my bed and hooked to a tube) to tell him it was okay, this was a tough week and at least it was the giggles and not something really bad, he accepted no excuses for his behavior.

Shortly after that, our other son tearfully told me that he still hopes that I will be healed but he now feels like this is it, this is how life will be: Treatments where I am in bed, days where I lounge around recovering, and then some good days, only to be followed by treatments again. On the plus side, his comments opened the door for us to talk about many aspects of his feelings. For example, he wondered aloud, might it be easier if I just died, because then all our suffering would be done and maybe we could all move on? (I have felt that way many times.) He asked about God and why he would let this happen. He didn’t know how he could continue to handle the stress of living with all this. I get it.

While I am glad that he was able to access and articulate his thoughts and feelings, this was one of the most difficult conversations I have had in my life. I wanted to be fully present for him at the same time that I just wanted to be anywhere else. But he was in a deep hole and it was awful for him and I needed to be there for him in any way that I could, no matter how crappy and inept I felt.

So, there we were. The kids were unraveling in their own ways, and I was not feeling like myself (to say the least) and unable to support them.

My husband arrived home late Thursday night, and we all started to rebuild the pieces of our lives. Slowly, one step at a time. By then, I was finally unhooked from chemo and had a long shower. We were back together as a family. We could move forward.

Luckily, my physical recovery was faster than usual and we were able to have friends visit on Saturday and Sunday. The normalcy of their presence halted our spiraling, provided healing, and brought us back to day-to-day life.

One step at a time, we regained our footing and our daily dynamic returned to what it was, slightly shifting in ways only visible (I think) to ourselves. I hope this experience helps the boys to be resilient in some way, but we are in the middle of the journey, so it is hard to know exactly where this will lead.

We are grateful to be doing this together and to have family and friends who are in this with us, who keep us heading down the path of light and joy and grounding and love. Thank you.

Blessings,
Marie