and then?

What does it feel like after you win the Olympics,
drink champagne carried aloft on the arms of manic frenzy,
begin to inhale deeply again, then stretch your winning body
in an unfamiliar bed a thousand miles from home, still the same
flesh and blood who emerged from your mother so many years ago?

How do you roll when, no matter how ideal a thing can be,
you understand there is a next moment, a next decision,
a next sunrise, breakfast, going on as normal soon enough
(the day your medal is encased and mounted on the den wall)
and it’s only in the fraction of a second you get to decide,
at every ordinary turn of time, how beautiful it all may be,
every slender hour behind the scenes.

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Happy National Poetry Month

In honor of redirecting words to clearly reflect
the unexplainable at times when grammar
gets in the way, when I wish only for shades of meaning
to wander through your mind, I commit to creating
a quantity of poems equal in number to the days
in my birth month (how fitting) at the suggestion of a poet
whose craftings I adore, especially in her own voice.
Thank you Andrea Hope. Happy National Poetry Month.

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Rough Day – update from my mom

Karen and I came back from Zion about noon yesterday, after my long chemo session on Friday afternoon. Usually by the next afternoon I feel pretty normal, but not this time. I basically slept from soon after arriving home yesterday until this morning, getting up every couple hours for a few minutes. Definitely wasn’t expecting that!

I still don’t feel very energetic but am basically functional. Some of this might be due to the surgical collar causing stress on my body. It appears likely that I’ll be released from it by the surgeon next week, but not certain.

My post-chemo condition is still very mild compared to that of many others’, so I’m grateful for everything that is helping me — good food, good medical care, good friends praying for me and with me.

We don’t have a schedule for next week yet, I should be hearing from CTCA tomorrow. Meanwhile, I’d be wise to just focus on resting as much as possible. Feel free to remind me of that if needed!

Love to all,
Helen

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Taking Stock – update from my mom

I can see why I became so depressed when I tried to come back to my house a couple weeks ago. There are so many things to pick up or move around or clean or whatever and my body was just not ready. Now, though, I can take care of most things without assistance and am happy to be back in my own home. Today a highly recommended guy named Chad (also known as the Picky Carpenter) came over to look at my front and back steps, gave me a very reasonable estimate of the cost to add guard rails, then proceeded to get started and finish, all before noon! If you are in the C-U area and need help with something, I highly recommend calling him at 217-649-0869.

Having the rails installed meant I could keep my promise to Heidi about not going down the steps without them. That is, to be more direct here, it meant I could go somewhere on my own. Alone. I haven’t been able to do that for almost three months. So this afternoon I took a bus to downtown Urbana, “ran” four errands (at an aging turtle’s pace) and came home exhausted but happy,

So the surgery recovery seems to be going very well, and I’m feeling much more energetic overall. On the other hand, I’ve been experiencing a lot of the same back and leg pain that first signaled my cancer, and am having to rely routinely on pain meds. I’ve discussed this with a Pain Management nurse by phone and will be seeing her in person when I’m at the Cancer Treatment Center Friday. Another round of chemo starts that day also, and I’m wondering if I’ll have any hair left after that’s done. A friend helped me wash my hair today and I can see that it’s getting thinner and thinner.

So that’s a basic update on my cancer adventure to this point. The assistance of friends continues to be of pivotal importance, and something I never would have experienced otherwise. Cancer brings pain and weakness and fear but it also brings love and spiritual strength and courage. Seems to balance out well.

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Very specific prayer request from my mom

Here’s the story: I am a poor pill taker. For many years I couldn’t get myself to swallow any pills, then I learned to take small pills, starting with the ones for my chronic low thyroid condition. Now I need to be able to swallow several large capsules every day — supplements of various kinds that are important for helping my body kick out the cancer, including the ones advised by the naturopathic physician at the Cancer Treatment Center. I’ve been trying to manage by opening the capsules and mixing the contents in yogurt or pudding or whatever, but it’s not working very well. So I’m going to be praying to get past this psychological block and be able to easily take the larger pills, and am asking for your help with the same.

Thanks for focusing on this with me for a while.

Love,
Helen

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Praise and Thanksgiving – an update from my mom

I have to tell everyone what a wonderful caregiver Heidi has been, I’m prone to becoming irascible and impatient when I can’t do things my way, and she has been more than a match while still able to lovingly see to all my needs. Case in point: The doctor told me it would be OK for me to sit quietly without wearing my surgical collar long enough to get the foam inserts washed and dried. The inserts were getting pretty grungy, so a couple days ago we decided to clean them. Heidi washed and dried them as quickly as possible but it wasn’t quick enough for me. By the time they were in the dryer I was feeling very insecure about being collar-less, and hollered loudly and often to get it back. Heidi couldn’t make the dryer dry the inserts any faster despite my rantings, and why she didn’t murder me when she had the chance, I’ll never know.

Tantrums notwithstanding, when I can do something myself, Heidi steps out of the way. When I can’t, she lets me know. Heidi and the boys have been enduring my demanding presence for weeks now, and it’s been a marvelous experience for me. Hopefully it hasn’t been a bad one for them.

We are planning to move me and all my accumulated stuff back to my house this afternoon, which won’t end Heidi’s caregiving, just lessen it to times when she comes there. I can’t yet safely shower and wash my hair alone, for example, so will need to call on her for that.

I’m looking forward to being in my own home again, able to put things exactly where I need them and sleep in my own bed, but am also feeling a bit sad about leaving here. When Heidi first saw this house and was considering renting it, she said that it would be perfect for me when I needed to stay there. At the time such a need didn’t seem likely and I couldn’t share her enthusiasm. But as is often the case, she was right, and I’m grateful for that, as well.

After the move it will be easier for me to ask others for help, however, because the street in front of this house is torn up for flood control work and the only way for anyone to get here or for any of us to leave is via a long makeshift path to a block where parking is still possible. Plus as I feel stronger I might be able to do some things on my own by taking the bus. Two bus lines run right by my door. The doctor said I could drive now (while still wearing the surgical collar) but that it’s not a good idea, and I definitely would feel unsafe trying it.

There is one great advantage to living in my daughter’s household that I am really going to miss. Brownies! She loves to bake delicious healthy brownies and to experiment with new batches, slightly altering recipes to make them better and even better. I’ve been in brownie heaven. Watch for reports of brownie withdrawal symptoms!

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What it is kid – oh how I love you so!

If you were here with us, you would smile at his soft voice, heart-shaped face, feathered blond hair just a bit long in a cool way, too-big little red sweatshirt sleeves crumpled at his wrists, with an ease I am lacking just now. Just now needing to not do anything I “gotta get done by…” craving quiet like a running man must have water.

In a leather sofa chair, tangerine Izze beside, he draws fat purple lines, sharp teeth, two heads connected by a cryptic tether, in his yellow composition notebook. Between artistic ideas he doesn’t (really) want to bother with, every bit of wondering shoots out of his mouth like a bright gold thought balloon aimed for my ears. He hopes I will answer and not (again) raise a single finger to my mouth, a silent “Hush child.”

I will not tell him I too wish he had looked harder for his netbook before we left for the cafe, but I do.

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A Way Through

I woke up at 6:45 this morning, after only three hours sleep, body taut like a spring, my ears ringing from anxiety, ousted from a dream I can’t remember. I had no reason to be up, but I could not go back to sleep until I calmed down and the noise in my head gave way to silence.

I moved to a makeshift bed on the floor, inhaled deeply, exhaled slow, asked my body, one muscle at a time, to relax, drank most of a bottle of water, and whispered, “I’m grateful for the cool breeze, sunshine, my mother feeling better…” I began to read Kisses From Katie by morning light.

Katie lives in Uganda; at eighteen years old, she witnessed poverty and disease I can scarcely imagine, and fell in love with the children. She intended to stay a year, unexpectedly found she was home, adopted several girls, started a foundation, sends hundreds to school, feeds hundreds more, assists thousands in a myriad ways, and plans to stay in Uganda forever. She is twenty three years young and gives all credit to her Faith in Jesus. It doesn’t matter that our beliefs differ in major and minor matters. Her life is a message that feeds my soul.

This morning I read, “Today the anger is gone, though sometimes I still have to sit with the Father (God) in my sadness and brokenness over all the hurt in this world. Sometimes I have to cry to Him and ask Him why innocent children must suffer and beg Him to move people to action. Still, we as a family just love the ones with whom God has entrusted us as best we can. We let him hold us as we hold the little ones He has given us to look after. We do what we can do, and we trust Him with the rest.

“When I have a rough day, or several rough days in a row, as I did around the time Patricia* joined our family, I can easily forget why I do what I do. I used to repeat to myself, “Do not forget in the darkness what you have been promised in the light.” When my days are dark and difficult, I am tempted to look around and think, Why? Why do I do this? Why would I take one more child? Why would we live with less so we can give to others more? Why did I leave my family and friends to go to a land of strangers? What am I doing here?”

My days are not dark, the challenges a ripple on the water, the depths serene and content. I let Katie’s words, the ones quoted above and pages more detailing each person lost or healed, each child joining their family or returning to the same place where each grew so ill, wash over me like healing water. I lingered in a place of no thought, allowing her experience to be my prayer, a wordless inner letting go of the cryptic tension that had engulfed me shortly after dawn, and a ribbon of love connecting my heart to the lost ones the world over; those eventually found and the fragile ones left to die before anyone knows of their plight.

I did get back to sleep after reading a while, my hand holding the page open, spring birds singing remember and be thankful, anxiety creeping away like an unwanted ghost of pity, and slept as if the rays of the sun itself rocked me in a loving embrace.

 

*Patricia is an infant from Masese, a baby so ill, her family (who lived in a house made of cardboard), did not giver her a name. Katie assisted and coordinated Patricia’s care until she was a healthy child, then adopted her, with the family’s consent.

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Day 21 – Positive Journaling

At bed time last night, the older kid said I’m always either “getting things done” or on my laptop. He has a point. Since we’ve returned to Illinois to help my mom while she does what she can figure out to (God willing) clear her body of cancer, I have been task, sanity, pace, and keep-everyone-fed-bathed-and-happy oriented. Not a lot of time for building train tracks or Lego structures, stuff I’m not that into or good at when all is leisure.

I have had time in the last week, but I’m in the habit of watching the boys play while I sit very quietly between dutiful doings. He helped me see this truth. We talk, laugh, pray in the morning, and I read to them each night. So I must have been pondering this how-is-time-spent matter in my sleep. I woke up with an awareness rather than a plan, a soft-spoken decision to make an effort to do more with my children.

On the way home from the health food co-op this afternoon, I asked who wanted to help me make brownies when we got home. Both boys piped up with enthusiastic yeses. Baking with little hands is not my idea of fun, or rather I dread the effort it takes to be patient with their talkative messiness, but brownies are easy, and involve a hand mixer, which I knew my older son would enjoy.

Once home, only older brother helped. I have a feeling little brother welcomed time to play exactly “his way.” We talked, kept up a silly banter, and made flourless almond-butter brownies. The sweet grin on my osn’s face while he carefully cracked eggs lifted my spirit. His willingness to listen before diving into each next task showed me he has matured.

The brownies are excellent.

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Update from Grandma Helen

Back today from a trip to Zion for the second chemo in this round, then next week off and going back March 29. The Physician’s Assistant that I met with was very optimistic. He said that I looked way better than he expected after reading my medical information, and that not having very severe chemo side effects in the early days of treatment was often a good predictor for continuing to have mild side effects and, if I understood this correctly, for possible tumor shrinkage. Karen can correct me if I got this wrong.

So now I’m looking at one more round of treatment starting March 30, and then scans to see what the cancer is doing. I can remove my buddy the space age surgery collar on April 9 and they have to wait for that to come off before they can scan again, plus I think they also might need to wait a bit after the last treatment to get accurate results, so I’m guessing the scan will happen in mid- or late-April.

Meanwhile I’m doing well at Heidi’s home and getting better at moving around, i.e., walking, reaching for things, etc. She helps me make sure I’m taking my usual supplements, plus I’m adding in the ones my Care Team advises and also checking out another product we’ve hard is very good, so maybe the cancer will get the message that it is definitely not welcome here, and just go away! (Like the picture Devyn drew of a line of cancer creatures marching out of my body.)

A friend told me that my updates on these Care Pages are really helpful to my friends and I have to say that having a place to write to you all is very very helpful to me. It clarifies my thoughts and focuses my feelings and reminds me that God’s love is coming to me in many unexpected ways.

That’s all for now. Love and hugs and prayers.

Helen

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