Day 4 – Positive Journaling

Day 4 – Reading the first three days of my positive journaling, one might be under the impression that our family just plays all the time. Though we do our best to make everyday sweet, which usually involves either having friends over, visiting at a friend’s house, or gathering with other folks at a third location for the purpose of simply socializing, this has not been our life for most of February. On Feb. 1st, the boys and I drove to Chicago to meet my mom where she was waiting for an emergency neck surgery. She had gone to Chicago expecting only to be there for treatment (a couple days), but ended up staying for three weeks. During those three weeks we stayed with her first at a hotel, then at the hospital where she ended up having a second neck surgery four days after the first, then at a friend’s house a couple miles from the rehab center until my mom was allowed to come back to our place a couple miles from her house (and 3 ½ hours from the rehab center) where we’ve been doing our best to help her whenever she needs it. Other friends and my dad have come over to spell me to go grocery shopping or on other errands.

It wasn’t until last Friday 2/24 that the boys and I went out to do something social. I wrote about it in the first positive event journal entry. Happily, the following two days were full of animated gatherings (and the events I wrote about in the 2nd and 3rd entries). But I still hadn’t been out of the house even one minutes on my own with out a “todo” list. That is until last night.

My husband took extra time off work to help us get loose ends worked out, like taxes, cleaning up the winter rental house we’ve been blessed with (to be near my mom in general while she strives to heal) for an appraisal, and to give me time to be Heidi in relation only to my own thoughts and to do whatever I choose.

I enjoyed my couple of hours in a crowded cafe downtown, a lighted corridor of tables sandwiched in a row of similar businesses, almost every table occupied by students from the local University. Between the hum of their animated conversations and the half foksy, half rock music coming from speakers all around, I was able to… I really haven’t straight forward words for it. At the cafe I wrote a poem (posted as “just another face”) that describes the beauty of that aloneness, an experience I have never had before as I have never gone a month without even a free minute, nor has my mom ever been so in need of care.

One day, maybe even next week, I’ll write about this whole experience we’re all having in relation to my mom’s cancer returning, but not today, when I’m so immersed in the details. But I will add a second positive from yesterday. My mom rode in the car six hours (after being in the house for a week, resting as much as possible) to go to and from a follow-up appointment with her surgeon. When she came home at 4:30pm, a short nap sufficed, then she was up most of the evening, hanging out and pretty much self sufficient, happily not wiped out from the drive.

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Appointment with surgeon (written by my mom)

Yesterday (Monday) I had a follow-up appointment with the surgeon. It was scheduled for 1:30 p.m. We left about 8:00 a.m. to allow for traffic tie-ups, but there weren’t any so we were at his office by 11:30. I checked in and was glad to hear they could take me right then. First came going downstairs for an x-ray, then back upstairs to talk to Dr. Alzate. He showed me the picture and said everything was going well, no surgical issues. (He also reminded me that the cancer was still there, something I’ve been reminding myself, i.e., that any possible long-term remission is still the big challenge. Heidi sent out a link to a blog post that echoes some of my own feelings about that, it’s http://open.salon.com/blog/cancerdancer/2012/02/23/dont_scare_the_newbie.)

He also said I could go home whenever I felt ready, and to take my collar off to eat and shower so my neck muscles will have opportunities to strengthen. As for the collar — 6 more weeks!! He didn’t make another appointment with me, though, so apparently he’s confident that if I follow his instructions my neck will be ready to function normally by then.

It’s amazing how much various body movement in the lower regions can affect neck muscles. I’m pretty much able to do stuff for myself now, and have my little arsenal of tools to help with challenges like not being able to bend down to put on socks, so I’m ready to go home and see if I’ll be OK there. Probably today , if Heidi and I can get to the store(s) to re-stock my kitchen. (I originally went up north expecting to have chemo and be back home in two days!) Dr. Alzate said I should do whatever I felt ready to do, but also counseled me to have help during the first couple days after chemo. That will probably mean staying at Heidi’s house again for at least one day next week, since I go back north on March 7 to see my oncologist and resume chemo treatment.

Many thanks to Amy Felty, my co-grandma, for driving me to Libertyville yesterday and all that involved. And to all of you for your prayers.

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just another face

It means more than it ever has, to sit in a cafe, alone.
Different than a break, time for myself,
or a moment to straighten out my sidewaysness.
I’m not tilted, it’s all one motion; their table-top voices
colliding with electric guitar, meeting my thoughts
at an angle altogether connected. I’m not on a time-out
or a time-in. I’m here a solo-me the same as I was there
being mother, daughter, wife, Head Organizer of countertops
needing to go singly for the first time in a month.
It gets to be that long when you are in the middle,
loved like crazy, needed, and the one meant to answer duty,
measured breathing a manner of staying present,
remembering the lonely, hungry, war-ravaged families,
so bowing in gratitude before my image of them,
taking nothing for granted, appreciating that I can
fold the laundry, remake the beds, wash
a day’s worth of dishes again, but waiting,
waiting gently, for the needed quiet of anonymity.

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Day 3 – Positive Journaling

Day 3 – At 12:30pm yesterday we arrived at the local Baha’i Center for a monthly Game Day that happened to be during Ayyam-i-Ha. Now a bit of background. Over the years, game day has been informal, held whenever my mom, husband, or I got the notion to host one. This amounted to one of us setting the date and time for the next Saturday then telling all our friends what we were up to. It wasn’t a Baha’i event, but we more than appreciated the use of the Baha’i Center. On the appointed day, folks would show up with food, games, musical instruments, and often more friends. We might begin at 1pm and not close up shop until 1am, laughing and playing continually in between.

Since than we’ve moved into an RV and don’t live anywhere in particular and my mom’s been working to recover from cancer, so game day has been neglected, though we have been encouraged by a certain sweet friend from Korea to host another one. Then in early January, a couple friends who are new to the area decided to begin a more organized version of Old Faithful. Theirs is regularly scheduled, a potluck followed by a specified time of games and hanging out with friends.

So yesterday was the second of the new breed. For the first time, all I brought were three drums, a bit of food in our basket, and my family. We arrived at a decorated, bustling Center, a table full of food and one person calling to another, “How are the ham and turkey doing? When will they be done?” Then in walked a friend we’d invited. Seeing as I was used to these events being informal, see-what-transpires kind of affairs, I hadn’t told him (or our other invited friends) about it also being a Holiday party. No matter, we just followed along with the pre-set program and added our own music and silliness. A drum circle that included two excellent drummers (one professional), and a Name That Tune By What’s Being Hummed that my younger son led, dancing in the center of the game with a beautiful smile on his face the entire time (may be the first time he has been willing to conquer his shyness and do his best in front of non-family). How that humming game gathered smiling, nostalgic, thoughtful participants as we all vied to figure out a usually off key melody. I spent most of it beaming at my son.

For lunch, at a long table covered in a white cloth, I sat at the end spot, the only female, which, I was told by another woman, was a great service, as it kept the men from being too something or other. Not sure what, but we were the loudest, rowdiest, laughingest table for sure.

Later, organized activities included “Pin the tail on the ???” which turned out to be an animal that wears its tail like a horn, and a gift exchange game where each person took a number from a hat and could, in order, either choose a present from the present table, or one already in the hands of a previous chooser. In the end, all carried home the gift they wanted.

Two raucous rounds of Apples to Apples lasted an hour past the official closing time, but the party was still in full swing even as a few noble souls began cleaning up. At the end of the card game, my older son found two jump ropes in a drawer in the children’s room and brought them out. Before we knew what happened, the lot us were completely immersed in all kinds of cooperative as well as competitive jump roping acrobatics.

The height of this came when my younger son asked if it was possible to jump in ropes going round and round in an X formation. We got that coordinated (the ropes have to go high enough at the same time, turned by four people with the ropes not parallel but crossed) eventually and first three people managed no more than two jumps each before getting tangled or whapped in the face. Then, the fourth person to give it a go decided to jump in rather than start from standing and he managed 22 jumps. There was much rejoicing! Turned out my son just happened to be recording. This news brought even more rejoicing.

Another hour later, just before 8pm (three hours after the “end” of the party) clean up being an ambling affair carried on by now very tired folks, our family left. Unlike previous Game Days, we were not the ones to lock the door, did not need to need to wait for cleanup to be completely wrapped up, and honestly, for that, I am immensely grateful.

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Day 2 – Positive Journaling

Day 2 – Yesterday, at a multi-family game night, the boys and I enjoyed ourselves immensely. I sat with a group of fellow home school parents and watched them play MTG. Between turns, we talked about whatever funny, random, in-common topic came up, and we laughed a great deal. My kids spent most of the gathering on the Wii downstairs. As we don’t own one, this is a major treat. In this group are about half a dozed little girls and one three-year-old boy with long blond hair, each a different age and height. They spent the evening going back and forth through the basement door, on a different mission each time.

I haven’t the slightest understanding of MTG, Yugio, Pokemon (the card game), or any gaming game, but I like being in the same room as folks who do play. Across from me was another onlooker and she and I enjoyed our posts as table ends.

At the grocery store on the way home, the kids and I talked and laughed. I’m sure this was a result of having just been renewed by being with friends.

 

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Day 1 of 21 – Positive experience journal

In the spirit of being a good student of what I believe to be sound science, I will be posting a journal entry each day for the next few weeks, beginning today. Each entry will be about something positive that happened in my life over the previous 24 hours. Below is the TED Talk explaining this decision. I’m going to do the other exercises as well, but may or may not mention them again on my blog during the journaling period.

 

Day 1: Last night, my boys and I went to my sister-in-law’s house for a Friday night study group that is also a time of much laughter and my children playing happily with their cousins, my nieces. Last night was no exception. During the early afternoon I found out is was my sister-in-law’s birthday, so found time to make her a cake (banana, a suggestion from my younger son). All enjoyed it, some took seconds. My mom especially loved the cake and was happy I brought some home for her afterwards.

The study group includes my oldest niece. I’ve watched her grow from a baby to a beautiful youth, poised on becoming and extraordinary young woman. Listening to her observations of history, the world, spiritual reality, and being in the fray of a public high school without getting caught up in the chaos, is one of my favorite way to spend time. I love how attentive she is to what all the adults have to say, and we range from 39 to 70+.

During the study time, when I checked on the kids, I found my younger son with his favorite cousin deeply and happily engaged in a game of (what if we lived in the world of) Harry Potter. My older son and a cousin he doesn’t normally spend much time with found a groove in a different room and enjoyed a board game and many giggles.

All three of us were immensely appreciative of a kind evening with family/friends and shared this gratitude as part of our nightly prayer.

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before we head home

We’ve got a few minutes, just you and I.
A few words at Starbucks between key clicks will do.
I took a picture to mark our first date here.
You with that small, beautiful, smile.
We’re not doing anything unusual. Mother and son
on familiar screens, lazily drawing in a kind of silence
to let another day order itself in the background.
But we’re in a magic land, I know,
because you’ve gracefully entered a special place
in my world from long before you were born,
and add an indescribable sweetness.

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here

I can always write you, tears, sunshine windows,
gently returning appetite, slow dance with life,
my heart spread out like fire, like water,
beating again and again, because it just does.
I could sing you fears, peripheral ache I ignore,
love washing over every minutest movement.
I look in the mirror, remember, this is my life.
I gather memories, moments like blankets,
keep warm before the ever-unknown.
Love is woven here.

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Homeward Bound?

Didn’t have much to say until now because I came here on a weekend when much of the staff is off. Things really start hopping around here on Monday! Physical therapists and doctors and occupational therapists and activities coordinators popping in an out all day long. I’ve had three therapy sessions so far and it’s looking very good for a Saturday release date. Which means we would get back to C-U in time to see the Soul Miners show!

Meanwhile I’ve been OK’d for getting around on my own with the help of a walker, and will probably be getting my own walker to bring home along with a couple other equipment aids.

“Home” is going to be Heidi’s home for a while. It’s safer than my tiny house with three cats roaming around, and Heidi will be able to watch over me — she’s really good at that! — and be there as needed.

One of our first tasks will be to buy some tops that close in front instead of going on over the head. With this protective collar around my neck (it’s the newest space alien look) and the difficulty in putting up my arms, most of my sweaters and other tops are inappropriate.

Meanwhile, I’m going to be reading “God Loves Laughter” to whatever residents would like to hear it, tonight and, if they are interested, every night till I leave. I’ve read that book to so many people in nursing home situations and listeners always find it a wonderful blend of humor and deep thought about God and His Messengers. So as soon as I realized I was going to be here my brain automatically made the association with the book, and Susan Engle kindly bought a copy for me.

I don’t know what my longer term plan is yet. My care manager at CTCA is coordinating oncology appointments and surgery information, and I expect I’ll be coming back up here a couple times in the next 2-3 weeks and resuming cancer treatment in another week or so.

This is a good place to be. I’m grateful it was here when I needed it.

Helen

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Next Stop: Rehab

I’ll probably be out of the hospital today, but won’t be going home. The next stop is rehab. Heidi found a place she liked yesterday, it’s also convenient for her and only about 30 minutes from the Cancer Treatment Center.

They haven’t allowed me to walk by myself yet, or do much of anything else on my own. The big fear is that I’ll fall, or otherwise move in a way that damages the surgical areas. Question: Do you have any idea how important your neck is, and how necessary for stuff that seems unrelated, like getting out of chairs? I sure didn’t, but have great respect for necks now.

When I’m healed enough from the surgery I’ll be able to continue cancer treatment, and the prognosis I keep hearing is 2 weeks. If I can get home in time to watch one of the Soul Miners shows, that would be wonderful. The last show is Feb. 18, so it’s kind of iffy.

Bye to all and thanks for support and prayers.

Helen

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