For The Someday Book

Halfway? Part One

Posted on: November 28, 2016

This post is a look backward, as I am today set to receive my final chemo infusion. However, it’s been on my heart for the last six weeks, and I can’t talk about where I am now without talking about where I’ve been. I’m trying to catch up–not just for you, dear friends and family and readers, but for me. This has been a hard season, and writing helps me process all that I have been thinking and feeling. Sharing with you all makes me feel strong in claiming my story. Beware going in, this post is less chipper than my previous ones. This is a space to tell the truth of the good times and the hard ones. Keep reading, though, as I hope to write two more posts in short order that catch up to today.

I thought reaching the halfway point in my chemotherapy would feel better than this. I expected to feel like I hit a milestone. Since I weathered the first half fairly well and with good cheer, I expected to find myself encouraged that, like meeting the winter solstice, I could begin moving toward the light instead of the darkness.

Instead, reaching the halfway point of chemo in good cheer freed my mind and heart to ask the hard questions about all the treatment and uncertainty yet to come. The sense of accomplishment gave me room to deal with some of the spiritual, mental and emotional issues that I have not had time or energy to approach since my diagnosis.  The blur of moving to London, first surgery, new job and chemo in the last three months made it so all I could do was keep going and push through. That was a gift, much like the numbness and denial of early grief. When that numbness subsides and the feelings break through, the pain floods in heavy and deep. Healing requires diving into the deep waters and learning to swim, surf, float through it. Halfway through chemo the dam of numbness gave way, and the flood took over with a host of questions and feelings.

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This is our cat, Chance, when I was changing the sheets yesterday. This is a good reflection of how I’ve been feeling, except I’d probably get under the big pile of covers rather than on top.

The fear about side effects returned, as the second half of treatment contained a different set of drugs than the first. I entered the clinic as anxious about the fourth treatment as I was about the first one. (Those fears proved not unfounded, but that’s a story for the next post.) Unlike previous cycles, when I enjoyed the “feel-good” days leading up to treatment, I found myself filling with dread and fear about the new and unpredictable set of pains and side effects, likely harder than the first three rounds.

A new set of questions haunted me. Is the chemo working? What happens if it doesn’t? There’s no way to know until they go in for surgery and get a new pathology report. What will surgery be like? What kind of surgery will I need? When will it happen? How rough will the recovery be? Then comes radiation. How long will that last? I’m already so fatigued, and that is supposed to be as tiring (or more) than chemo, because it’s every day. How much work time will I miss? How will I keep up? Again, when will I know if this is working? (Just to be clear, the doctors have given me no cause to down the effectiveness of treatment, and I am holding on to that truth and trust–but it is natural to await proof that my cancer is responding as expected to the treatments.)

On top of all that, I am just getting tired of it. Halfway meant I had lost nine weeks already, and had another whole nine weeks to go. As a child, that was the length of an entire grading period in school. Half a school year in total, which always felt like an eternity. And that’s just chemo. Halfway through chemo isn’t halfway at all, with two surgeries and radiation ahead. Instead of feeling like I was headed into the light, it felt like a carnival ride that was lasting way too long.

If you know me at all in real life, you know that descriptions like “high-energy, hard-working, creative, cheerful, always upbeat” fit my usual self. Not my usual self during chemo. I wrote in my last post, many weeks ago, about my small world being enough. It stopped being satisfying about the time the halfway treatment arrived. I am tired of sleeping 12 hours a day, when I’m used to sleeping six or eight, and still being tired in the short hours I’m awake. I’m tired of “chemo brain” that makes it hard to concentrate, difficult to write (especially sermons), nearly impossible to read a book or some days even follow a television show. I’m tired of not going anywhere, except when work or family obligations demand it–and then planning days of rest on either side to make sure I can have the energy to go and the time to recover.

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I bought this blue wig for Halloween, but I love it so much I keep wearing it–especially on days when I need courage. This is a pic from the Macmillan Cancer Centre, where I come for treatment and doctor visits.

 

So halfway through chemo, instead of feeling like a triumph, felt like a realization that there is a long way there is yet to go. Chemo is cumulative, so each round leaves me weaker and more fatigued. The halfway point brought that truth home, as I am not bouncing back like I did in the earlier rounds.

Halfway marked the first time sadness and self-pity set in. Suddenly, instead of laying in bed longing to be well and get out, I found myself on good days still longing to crawl back in bed, away from the world and away from people and away from cancer. I felt grumpy, cranky and mopey. I barely shed any tears over cancer from the diagnosis through the beginning of chemo. At halfway, I began crying in the shower every morning. After eating good and healthy foods, and having little appetite for the first three rounds, the new drug has made me ravenous, and I’ve turned to my oldest emotional crutch: way too much junk food. I don’t feel guilty over it, but it’s a sign to me that I need to pay attention to my feelings.

Halfway was now six weeks ago, and today I go for my last infusion. I wish I could write that I was better now, that the cloud had lifted and my cheer restored. That wouldn’t be true, though. I still feel heavy these days, not just in fatigue of the body, but of the mind and spirit as well. The news isn’t chipper, but it is still good: I’ve been here before. I’ve known seasons of grief and hardship, and I know they don’t last forever. I have learned what I need to heal–space, time, a warm bed, comfy clothes, a good sappy movie, a deep escape into a good novel, conversation with friends, conversation with God, space to journal, time to weep and let all the feelings surface, time to remember who I am, time to take stock of what has changed, what is lost, what is gained. And, yes, probably all of these moments involve junk food, too.

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Speaking of comfort food, our Thanksgiving feast (and the boy in the picture) offered some great joy–for quite a few days, with leftovers we’re still enjoying.

Chemo is relentless, which means much of that deeper healing work will have to wait. In the meantime, trust that I do not despair. I persevere–surviving more than thriving, but that is all I need to do right now.

Plenty of good moments remain, which give me hope that more will follow. When things get low, I list them to myself. I love my work, and my new church has offered some beautiful, wonderful, glorious days in this time–the gift of many newcomers ready to engage, a Thanksgiving luncheon, the chance to help lead the Thanksgiving service at St. Paul’s Cathedral, deeper relationships with people in the congregation, and a fun day decorating for Christmas, with our children delighted to take the lead. My husband and son are wonderful, and they know how to take care of me–which is not easy for someone who doesn’t like to need care from anybody. My extended family, my parents and I have grown closer and more intimate through this process. A core group of friends receives all my complaints, need for prayer, TMI medical details, related inappropriate humor and curse words. They respond with instant encouragement, laughter and grace, as the situation demands. A wider group of friends send gifts and cards, weekly messages of encouragement, scripture and humor, and reminders of their prayers. My current church lets me work, and they also let me not work, as the day demands. They too offer prayers, soup, patience, flexibility and understanding. My former congregation has sent gifts, prayers and love in the kindest, most meaningful ways. All of you who read and respond here and on Facebook offer me much encouragement as well. I need people to listen–and by reading this, you do.

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Under the dome at St. Paul’s Cathedral, preparing for the American Thanksgiving Service on Thanksgiving morning.

This week marked the beginning of Advent in the church. Yesterday, we lit the first candle of the Advent wreath, the candle for hope. This has always been a powerful moment for me, especially this year. Against the darkness and all alone, this first candle shines in the darkness, a tiny, fragile flicker of light. That’s where I am right now. Not shiny and bright, not basking in sunshine or under the bright stage lights, but holding on to hope, fragile and flickering against the darkness.

More to come soon, I hope, about the pathway between halfway and today’s last treatment. Thank you for listening, for praying, for supporting me along this journey.

 

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14 Responses to "Halfway? Part One"

Praying for you daily, dear one.

Like that we can be a part of your healing and listen to your thoughts and feel your feelings. Thank you for sharing your journey. All back here that know you are thinking of and praying for you. Hope that helps you a lot. Hang in there. With love.

Enjoyed your bit about the junk food craving. Careful, there. When I was first diagnosed, one of my only comforts was the thought that I’d lose some weight. After all, aren’t cancer patients always pictured as frail, thin little things? The nurse quickly shook that notion out of my head by telling me that many breast cancer patients gain between 10-12 pounds during treatment. And, right she was. And as I’ve been blessed twice by this insidious disease that means 24 pounds added to my already plump frame. But, on the bright side: I am still here, so I think that happy thought and do not complain. You’re in my prayers constantly, Jennifer.
Chin up and Merry Christmas, Mary Jane Sufficool

Thank you for letting us share in the ups and downs of your journey.

Hi,

You may remember me. I am the doctor on the search committee of the Wellesley Hills Congregational church. I have been reading your blog with great interest for three reasons.

1- As a physician who has treated cancer in its many forms I am always interested in the patients reaction and how they are coping with the disease. It is difficult to get anything but very superficial knowledge about this. Thank you for sharing.

2- My wife had cancer of the breast discovered three years ago. We both went through the treatment and the private fear. (we have been married for 60 years and had a firm relationship for 65 years.)

3- Your sharing brings back some of the private fears I had while my wife went through the therapy and it make me realize how lucky we both are that the beast has not returned. It hangs over our head like a black cloud but the cloud is now gray and we can see that someday it will be white again.

Again, thank you for sharing and rest assured we are praying every day that your dark cloud will be white again.

Dr. Alfred Persson MD

“Holding on to hope, fragile and flickering against the darkness.” Powerful words – especially for Advent… thank you Jennifer. I give thanks for your openness, and your willingness to share this difficult journey. We hold you on our hearts and prayers.

HOPE…always part of my prayers for you. Although we are now many physical miles apart, I feel closer to you than ever. My many memories of you from your baby years to teen years to married years stream in daily. Not a day goes by that I do not pray for you, my beautiful daughter…as I always will. I know you and I know you will win this battle. God needs your presence in this world for many years to come.

I can remember my relentless season of loss and how there was no time to grieve but just dog-paddle my way through each heartbreak hoping the rushing waters would deliver me to a calm eddy or an embankment to rest. My hysterectomy, my cousin’s murder, my aunt’s traumatic dying months later, work, 2 failed adoption matches, not working…oh the grief left unattended! And then all was still. I was in a wet cave, but it was quiet. I could wrestle with the angel and the angel was overcome.

That time did spit me out on shores I never imagined. It changed me. And only love sustained me to come through, even as I tore at my heartache to be rid of it. It gave me a new family motto, “We get through hard things together because we love each other.” It brought me to my knees at the altar of my now Episcopal church home. It led me to fall in love with Jesus and Christianity anew. And it broke my heart into a million pieces.

I share this to say only this: I feel you sister. Not the same, different body, different stories, but I feel you.

May Mother God continue to come whispering in the right times and places and people and say, “Oh daughter, what shall we do with all these broken pieces? What can we make together?”

Your writing speaks to your heart that is hearing her already…

With love and prayers.

Thank you for your update. I can only imagine what you are going through. So many people have a hard time continuing chemo because it is so draining. Your strength is amazing! Our prayers continue for you and your family as you continue this journey. God be with you. Katherine McWaters

Your honesty and candor continues to shine a light on a very challenging process that far too many people have faced and are currently facing. I offer no platitudes or inspirational words other than to just encourage you to keep being you. The way you continue to hold onto your depth of character is amazing. That is really all we ultimately have in life, I take inspiration equally in your strength and your weaknesses (though there are far fewer of the latter, and they pale next to your strengths). May God bless you and continue to walk with you always.

Dear one you are in my prayers, daily. I know this might be of no comfort — but I think this life you are living now is a mine filled with the sorts of treasures we never want to acquire — but once we have them — they are ours to give away. I know you are wise and are balancing doing and not doing. And, honestly, if you weren’t dancing with the unpleasantness of this, you’d be hurting yourself in another way. Blessings, Jennifer and family, congregation and community. Sending lots of love!

Hugs, many, many virtual hugs.

Dear sweet Jennifer, you are on our minds and in our prayers. Sending love and hugs to you and the boys.

Jennifer, I think about you often and pray for your comfort and healing. I have not experienced what you are going through, but by reading your blog I get a sense of all your struggles. You are so courageous and so smart and I look forward to each new post and every picture of new hair. I hope that all of this will soon be behind you and only beautiful memories of London will be left.

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About Me

I am a full-time pastor in the United Church of Christ, mother of a young child (B.), married to an aspiring academic and curmudgeon (J.). I live by faith, intuition and intellect. I follow politics, football and the Boston Red Sox. I like to talk about progressive issues, theological concerns, church life, the impact of technology and media, pop culture and books.

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