This is the Kind to Get

Linda Edwards, Writer

We all have the same 24

This post was supposed to be about chemo brain. My Patient’s Guide to Cancer Care three-ring binder has a whole page entitled, “Chemotherapy Related Cognitive Impairment.” I was going to share a funny story about losing my car in the Walgreen’s parking lot. In my defense, I forgot I was driving Don’s car, but I walked around it twice, missing the Detroit Lions sticker on the rear bumper each time. I also missed my workbag sitting in clear view on the front passenger seat. I finally realized the gold Camry was the car I had gotten out of ten minutes before.

The general fuzziness and lack of productivity I have been experiencing is the reason I haven’t written a blog post in a while. “It’s okay,” I told myself. “Be kind to yourself. Start kicking back a little. Don’t worry about getting your thoughts together for another blog post. Chill.” I think I’m actually making some progress at getting good at doing nothing. I’ve been leaving work a little earlier most days. Bucky and I have figured out the division of space on the couch. I’ve read half a dozen of the books on my some day list.

But instead of chemo brain, this post is about the passage of time. Time is marching on since my Hodgkin’s diagnosis. I’ve already changed the password on my work computer twice. My symbol-word-number password combinations used to include Bucky. That changed to Cancer. Now it’s Warrior. Will I have enough clever combinations to get me through?

From the beginning, I’ve always relayed the initial phrasing from Dr. Asik, my oncologist. “The proven protocol is four to six cycles of chemotherapy.” Each cycle consists of two treatments, one every 14 days. Based on my stage two diagnosis, he said I would likely need only four cycles. “We’ll reevaluate after the PET scan at two months.” I tried to be realistic. But I’m an optimistic person. If someone can do this in four cycles, or eight treatments, why can’t it be me?

A week ago Monday I had the two month PET scan. Friday, I met with Dr. Asik. He gestured with his hands, moving them up and down in front of his chest. “Everything from your waist up is back to normal,” he said. “The chemo is working.” He paused and then continued. “But, the area of concern in your lower back is still there, although it is half the size.”

Huh?!

The scan right before I started chemotherapy had shown “a questionable area” on the right side of my lower back that triggered the decision by Dr. Asik to do a bone marrow biopsy. I had been told the biopsy was negative and that the area in my lower back was not a concern. At least that’s what I remember hearing.

I said to Dr. Asik, “I thought that was nothing?” He explained that he needed the results from the second scan to confirm. “It has reduced in size from 1.3 cm to 7 mm.”

He also reminded me that the nodule in my lower torso is a third area of disease, which changes the cancer staging from two to three. “Because it’s stage three, I’m recommending we add another two cycles of chemotherapy.” I’m looking at Don. He’s looking at me. I know we’re both trying to calculate how many weeks that will add to the treatment schedule. “So it won’t end in May?” I ask. “We’ll reevaluate at the four month mark,” Dr. Asik says. “But you’re probably looking at mid-June.”

Ugh.

Partly, I’m relieved. The chemotherapy is working. There had been a very small part of me that had been worried. Am I having such an easy time with the chemo because it’s not working?  But mostly, I am ticked. I found the lump in November. I was scared, but tried to remain optimistic. The chemo started in January. I put on my game face and tried to be realistic. I did four of eight treatments. The end was in sight. I planned to put my head down and muscle it out to the finish line. I was starting to plan the next chapter. Get back to normal at work. Take my next MFA class. Start training for a September triathlon.

Now I’m not over the halfway point any more. It’s March. My game face looks puffy and tired. I don’t like wearing the wig helmet. I have to plan to refill prescriptions and set up my pillbox. I must remember to take my pills. I get exhausted from waking up for a couple of hours in the middle of the night. I’m not normally a germ phobic person, but since my immune system is compromised, I open doors with my shirtsleeves. My fingers are cracked from washing my hands so frequently. I nod to surprised and slightly annoyed people during the sign of peace at church.

I’m worn out. I’m weary. I’m struggling to process the never-ending pause button that has become my life.

Now I have to hope the next scan is clear.

I’m tired of being realistic. I want to be my optimistic self.

I’m not used to this. I don’t like this. I’m not a sit around kind of gal. I’m a doer. A goal setter. A multitasker. What else can I cram into my day, my week, and my month? I like to have a vision. To dream big. To make a plan and do it. And then consider what’s next.

I don’t know what’s next. And what I think might be next seems a little grim. It’s getting harder. I’m reminded the chemotherapy is cumulative. It’s not exactly a strong finish I can visualize, then high five and celebrate.

The emotional rollercoaster has returned. I’m crying in the car again. Heck, I’m getting filled up during casual conversations. It’s awkward not being able to respond because I’m starting to cry. I’m also easily annoyed and impatient; particularly by people I have no business being annoyed and impatient with. My husband is doing his very best to support me. I know this is true, yet I expect him to be a mind reader about what I’m experiencing. Why doesn’t he know my world revolves completely around only me right now?

The other day I was sitting in the waiting room between the first and second parts of the PET scan. You’re told to expect about a 60-minute wait. Sixty minutes is a long time sitting in an uncomfortable, straight back chair. I felt as though there were germs everywhere, so I had positioned myself in the seat at the end. The area was small, with only eight chairs set up in an L-shape. A couple was also waiting, sitting kitty corner to me.

The man was challenged verbally and seemed to be communicating in paragraphs of gobbledygook. I couldn’t understand any of what he was saying. It reminded me of when Mary was a toddler. His wife seemed to understand and patiently responded to each statement. I was ashamed at what I was thinking about this poor man. Please be quiet so I can read my book and pass the time until it is my turn.

My head is full of nothing and everything. It’s all swirling. What is meant by all of this? What am I supposed to be learning? What am I meant to capture from this experience? The length of time I’m meant to do nothing? The kindness of others? What I’m capable of? The essence of who I am?

During Lent many years ago, the youth group at my church made and sold Anglican prayer beads as a fundraiser. Anglican prayer beads are divided into four groups of seven beads, called weeks. Larger beads called cruciforms separate each week. Each of these various sections and beads ties to a specific line of repeating prayers that are summarized on a photocopied sheet that came with the beads. The sheet is now worn from folding, and stained from where I have spilled my morning coffee on it. Here is the one I’ve been praying with lately:

A Prayer for Serenity

In the name of the God of truth, of healing, and of peace. Amen.

In you, oh Lord, have taken refuge; let me never be ashamed. In your righteousness, deliver me and set me free; incline your ear to me and save me.

Oh God, be not far from me. Come quickly to help me, oh my God.

God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

You strengthen me more and more; you enfold and comfort me.

I end with the Lord’s Prayer.

I share this because maybe it will help you with challenges you are experiencing. It’s helping me get through my funk and get back to warrior mode. Let me know if you want some help to make prayer beads or to get a copy of the prayer sheet I’ve been using.

This thing called life is a day-to-day journey, but we all get the same twenty four hours. What we do with them is up to us.

Categories: Uncategorized

14 replies

  1. I now hate Tuesdays. I believe in you and pray for strength for you every day.

    I signed up to be a mentor for the next running clinic in hopes of getting back to the old me. Now, I look forward to a better,new me that has you running or biking or swimming right next to me.

    Let’s get there.

    Liked by 1 person

    • That’s my plan. I don’t know if the September triathlon is doable or not, but I’m going to start training regardless and then make a decision. I will connect with you on walking between now and when the clinic starts. Maybe we can get to the track some more.

      Liked by 1 person

  2. Linda, yes I would like the prayer sent to me, in your time, no hurry. I honor your strength and vulnerability. Let me know when you feel up to meeting for lunch.

    Beth

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  3. Sister………..I would love the prayer and you should know lack of patience is in the Female DNA and also characteristic of Irish/Italian /Religious women . Therefore we have a double whammy………….the impatience will go with the next positive scan. Do you need a driver for your next session. I’m available……………your twin, Sue

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    • When is your April vacation – if it corresponds, I would love you for that one. You’re always welcome, but I hate for you to take a day off to do it. Let’s talk further. I’ll have he prayers for you too.

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  4. Thank you for letting us know how you are doing. I have been wondering. I admire your ability to share with us your good times and bad. I see you doing another triathlon very soon.

    Liked by 1 person

  5. Like before, your post gives me much to mull over. I can imagine how you must be inwardly rebelling. You may sometimes feel fuzzy, but this post is clearheaded as ever.
    You mention your immune system is compromised. The past few months, I’ve cut sugar (that is, all forms of refined sugar, including honey and syrup) out of my diet, and I have no doubt that it has strengthened my defenses against colds etc. Eating lots of fresh fruit and vegetables may also help. I don’t know if this is any help during your treatment, but it’s something to consider. (Think of eating salads as exercise you can do while sitting on the couch!)
    Go get those 7 millimeters!

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    • Thanks Hanna. I’m so grateful others are finding my posts meaningful. Good for you on cutting out sugar! That is a huge step, but I agree that is it’s definitely helpful. Good luck on your journey as well.

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  6. OK, Missy. AFTER I’ve written most of my thoughts, I come back up here to say that I wish you would give yourself a high five and a celebration. I wish you would cut yourself some slack, and I wish you knew that you are doing all of it that you can – whatever “it” is. And I wish you knew that you will have answers, but you will have to be patient. So this paragraph is really the end, but once I found out where I was headed, I didn’t want to make you wait.

    The beginning:

    I quote you – “I’m not used to this. I don’t like this. I’m not a sit around kind of gal. I’m a doer. A goal setter. A multitasker. What else can I cram into my day, my week, and my month? I like to have a vision. To dream big. To make a plan and do it. And then consider what’s next.”

    How about re-defining what the act of “sitting around” is for you at this time?

    When I sit around, I’m sitting around. When you sit around you are ridding your body of cancer. I wish I knew the medical terms, but… you are sitting quietly so that your body can have all the energy it needs to deal with the cancer as an invader and deal with the chemo’s myriad affects, while at the same time, maintaining all of its other life-sustaining functions. Doesn’t that make you a “multitasker” of the highest order? Doesn’t that make your day, your week, your month pretty crammed?

    Furthermore, I think you have a vision, a big dream, and a lofty goal – to be cancer free as soon as you can as healthily as you can, so as to be back to triathlons as fast as you can. I think you made a plan and you’re following it. I think the plan has to include a lot of sitting quietly, so that the rest of the plan can be implemented. Perhaps, if you could reconsider your view of all of the rest time that you need, you could be less impatient with the process, and with yourself, and, therefore, with your loved ones?

    Perhaps, if as you sit, you could say to yourself, “I am pretty damn busy here!”; it would help?

    I quote you – “I don’t know what’s next. And what I think might be next seems a little grim. It’s getting harder. I’m reminded the chemotherapy is cumulative. It’s not exactly a strong finish I can visualize, then high five and celebrate.”

    If I think more broadly – In our whole life we have never known what’s next, and the possibility of it being grim has always been there. As a trajectory, life often gets harder, and, certainly, we all have the physical and emotional scars to prove that its affects are cumulative. And, I would say, that it won’t be “a strong finish I can visualize, then high five and celebrate.” Perhaps, this is where “time” comes in. We can only choose how we are going to live the moments. We can’t relive the past, and we can’t know what the future will ask of us. But, we get to decide, moment by moment how we will live that moment – and we need energy for that decision, particularly when we are sick and in dis-ease. I wish we could stop more often after a moment and high five ourselves – Phew! Another tough moment gotten through!

    Again – “My head is full of nothing and everything. It’s all swirling. What is meant by all of this? What am I supposed to be learning? What am I meant to capture from this experience? The length of time I’m meant to do nothing? The kindness of others? What I’m capable of? The essence of who I am?”

    Dearie, as you are well aware, these are The Big Questions Of Anyone’s Life. I don’t think you are any more required to answer them during these cancer moments than you were in your non-cancer moments. I think you get to continue answering them moment by moment as you have.

    I would argue that we don’t all get the same 24 hrs in a day. I would argue that any given hour in a day isn’t the same as any other hour. The hours that I live throughout my days are elastic, fluid, bending; not at all as metronomic as the tick, tick, tick of a clock suggests. An interesting Fun Fact – One time on the radio, I heard a talk about time. (I’m sorry, I don’t remember the speaker.) He pointed out that when most of us want to feel like we have more time, for example, a longer vacation; we do less. We try to slow down the time as we live it by spending time doing nothing; but, in our memories, from one moment to another moment – for example, a Monday to a Monday – the more we have done in that time period, the longer the time period feels to have been. When we say, ” Wow! I can’t believe that (event) was only last Monday!”, it is because we have had so many experiences since then that we feel like it’s been longer. Time as we experience it does not conform to the methodical arrangement humans have made of it for social purposes.

    For what it’s worth. Mary

    Liked by 1 person

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