People Seem to Think I Have a Good Attitude

I don’t intend to just post “cancer” updates here, but I occasionally write something on my caringbridge site that I spent some time on instead of writing something for this blog and I decide to share here as well.

I am working (a little at a time) on some blog posts that are not cancer related and I hope to get some finished and posted soon!!!

So … here is something I shared on my caringbridge.org journal on November 4, 2013: 

I’ve been writing this the past couple of days, knowing I wouldn’t feel like writing much today. Chemo 4 is over! It went well, but I always need to rest afterward so I’m on the couch. I’ll give a better update in a day or two.

Sorry it’s kinda long!

I get comments about what a great attitude I have and, even though I don’t always have a great attitude, it has made me think about why I have been as okay as I have been. So here are some thoughts in no particular order:

* It is much easier to be positive about cancer treatment when you feel bad to begin with and you see immediate results. Losing 16 pounds of fluid and getting your neck back in one week after your first chemo treatment tends to make you feel more positive than negative about the whole thing.

That said, I noticed after my most recent treatment that it was easy to get grumpy and down because it took me longer to recover this time and I’ve maxed out the “I feel better now than I have for months” aspect. So we’ll see if my “positive attitude” holds from here on out… And if I had suffered from nausea and vomiting during this, I seriously doubt that you would think I’m so positive.

And every time I think about the serious nausea and vomiting that patients not that long ago suffered through …. I have to turn the lights off on the pity party.

* From the very beginning, I have been treated with kindness and compassion and a “rallying around.” This began the day my doctor made a house call to deliver the news that I have cancer and sat at my kitchen table to talk about it – no phone call leaving me in a panic. Then people started coming out of the woodwork – bringing a gift, bringing dinner, sending a loving note, the love and concern expressed by my ESL students, etc. I think this all set a tone for feeling positive and that I would be helped through this time.

* I decided not to hold back on sharing the news. I told lots of people through email and phone calls and told them they could tell whomever they wanted. Why?
– I’ll take all the prayers and positive energy I can get to help me through this.
– I wanted to get the “telling” over with ASAP. It’s hard enough to do 5 times. I didn’t want to do it again and again and again. Just be done with it!

* A friend who has had several serious health crises, including breast cancer, said something to me early on about how you just do what the doctor tells you to do.

I don’t always do what the doctor tells me to do. My endocrinologist and I go around and around about osteoporosis medication. But in this case, the best policy for me has been to trust my doctor. Dr. T. is well respected as an oncologist, my own doctor knows and respects him, our first impression of him was very positive, and there was no time to waste. He reached out and squeezed my hand in an act of compassion during that first office visit – displaying a combination of medical expertise and empathy.

This doesn’t mean that I’m not paying attention and keeping up with my medical care, but I have surrendered to Trust – of my doctor and medical care team. They haven’t let me down. And I’m trying very hard to trust that it will all work out – the Big Trust.

* I decided right from the beginning that I wasn’t going to spend time looking for information on the internet and scaring myself to death. I occasionally go looking for specific information on trusted websites – but never ones with forums where people share all the terrible things that have happened to them and will certainly happen to you too.

Mostly I read the information that the doctor gave me, and did not dwell on all the negative side effects listed in detail. And I just take one bite at a time. Have I read enough about stem cell transplants? No. I had enough to deal with in the beginning. Now, though, it’s time to start educating myself as the time approaches.

* What a difference a gathering of friends can make! Getting together with friends for dinner and sharing and laughing and reminiscing and advice and scarf wrapping demonstrations was a great boost to me. I knew my friends had my back. And that kind of positive energy stays with you.
Kathy's support group 25 SEtp 2013

* I just don’t go “THERE”. Yes – cancer could take my life. The kind I have isn’t the best kind to have. But I just don’t go there.

When my oldest daughter was in college, I developed a kind of self-discipline to help me keep my sanity and ability to sleep at night. She was half a continent away – living by herself in the back half of a house with a flower shop in the front and some kind of Navy base across the street. She had no neighbors, kept the latest hours, usually didn’t answer her phone when I called, and sometimes didn’t call back. So I told myself I couldn’t think about her or call her after about 5:00 pm because if I called and she didn’t return my call, I would worry about her all night long.

It’s weird, I know, but it kept me sane and sleeping. So, I just don’t go there. I’m not allowed.

I’m good at this – I rarely go “there”, but I took a little trip there on my birthday. I came to the conclusion that days that mark an event or the passing of time are ripe for thoughts that “this could be my last birthday, Christmas, … whatever.” I would venture a guess that many people dealing with a health crisis are visited by these thoughts on “special” occasions and want most of all to spend time talking with or being with family and friends doing just about anything… just making a little memory.

* If I do my morning time for devotional and prayer and “How to Have a Good Day Every Day”, I have a better day. This has been very important for my attitude. I think I’ll write a separate post about it.

I like to do this outside and if I do, it is even better – because being in fresh air and listening to the birds and being a part of nature lifts my spirit and is healing in and of itself.

* I am constantly overwhelmed by gratitude for you – and many others. I have simply been in awe – and frequently brought to tears of thankfulness.

Never underestimate what a difference a little act can make – whether it is simply reading this journal and leaving a little heart (or a message or a silly poem), or sending a card, or a little surprise, or giving me a ride and sitting with me at the doctor’s office, or adding me to your church’s prayer list, or bringing food, or calling on the phone, or a little text message. Every little thing makes me feel cared for and hopeful. And never feel guilty that you aren’t doing enough. That’s the beauty of it. Every teeny tiny little thing fills a need and is added to another little thing. It’s a big, cumulative group hug.

I’ve put a lot of the little things I’ve received on a table that I can see from my spot on the couch. I’ve named it my Altar of Encouragement because it is a reminder of your collective prayers and thoughtfulness.
Kathy Altar of Encouragement

* I’m pretty good at adapting – it’s just the way I am. I moved a lot as a kid and had to learn to live where I was. The same can apply here. I just live where I am.

* I know it bothers some people to depend on others and accept help, but it doesn’t bother me so much. I learned to accept help when I had my first baby. It’s another form of surrender – to just accept the help you need – and even some you maybe don’t need. It frees you from trying to do too much or trying to prove that you don’t need help.

* Talking and writing helps. I know that “phone a friend” is available to me when I need it to vent or whatever. And writing this journal is really helpful to me. Processing my thoughts and feelings and making sense of them and writing them down and sharing them – it just helps. Plus the burden it relieves in keeping everyone informed in one place. So thanks for reading!

* And last, but certainly not least, my husband is the best and takes such good care of me. He has taken on so many additional chores around here as well. He frees me from worry and guilt. I can’t imagine how I would survive without him!

So those are some of the reasons that I think I have been pretty okay through this process so far. There may come a time when I’m not as okay. We’ll just have to see. And the ways that I cope may not be the best ways, but it seems to be working for now.

As I have said before, I have felt “carried” by the collective prayers and thoughts of all of you and people I don’t know who are also praying for me – and protected, perhaps, from fear and anxiety.

Addendum:
I felt like I hurried to publish this originally and gave my husband short shrift. I didn’t even mention that he brings home a dozen roses every Saturday when he does all the grocery shopping! What a sweetheart!

And just so you know, I had a CT scan recently that showed that chemo is working. All the bad stuff in my neck had just “melted away” the nurse said. And the others throughout my body are shrinking as well. Stem cell transplant in my future – sometime in January or February.

And you never know where you will experience a random act of kindness. The friend that went to my chemo treatment with me this week went to get us sandwiches. (By the time I get blood work done, see the doctor, and then have chemo, it takes about 5 hours, so you need nourishment!). The man who was making our sandwiches “to go” asked if she was taking to a friend. She told him, “Yes. In fact she’s in the chemo chair right now.” He told her he would make mine extra special.
Kathy Thundercloud Sub

I Made it to ESL

I haven’t written anything for a while, so I’m going to cheat just to have something to post.

I have a caringbridge.org site to keep family and friends informed about how I am doing. This, and other sites like it are so helpful because it becomes overwhelming and burdensome to keep your loved ones and friends updated.

So – I just decided to pretty much copy today’s journal entry to have something to add here. Here it is:

I’m feeling pretty good this week. 🙂

Last Friday I had achey bones, so I knew my Neulasta shot was working and those white blood cells would be on the rise. (I’ll find out for sure when I go for labs in the morning.)

1st time out in a scarf

1st time out in a scarf

Sunday I went to church for the first time in months. Our ESL (English as a Second Language) class was being recognized for our 10th anniversary and I really wanted to be there. A few students participated in the service and we watched a great video about our class and students. It was also my first time out of the house in a scarf. One of the things about losing your hair and going out in a scarf is that you are quickly identified as someone with cancer – so you do feel as though it draws attention to you. In some ways that is not all bad, I guess, because there were a couple of people who didn’t know who saw me and came up to offer their support.

I got quite a few hugs during the welcome, communion, and after the service. One of the ESL students – a woman who started attending during my absence from class so I had never met her before – was very concerned about me. She said that she was in my position (she had had cancer) two years ago and that it was okay for me to tell people not to touch me.

It was a beautiful morning and good to be with friends and students in church. Then my husband and daughter and I went out for lunch, so it was a good day all around.

I got up on Monday and thought that since I felt good, maybe I could try going to ESL. I wondered if I was being foolish since I had a low white cell count last week and I would be with so many people, but I decided to go anyway. My daughter works in child care for our ESL class, so I had a built-in ride. I made a big sign to wear around my neck that said “No Hugs” and decided I would offer to teach an advanced group of students because it is less taxing. With the lower groups I get up and down a lot to write on the board and it is a bit more difficult to teach at times.

By the time we were doing announcements and before I actually started teaching, I was struck by a big wave of feeling tired and weak and I wondered if I had made a mistake. It passed and all went fine. A couple of times while I was teaching I’d get a little wave of tiredness but they were short-lived. (It’s weirdly like hot flashes in the way it can come and go.) I had a wonderful time being with the students and teachers and especially teaching my group of students. This group in particular enjoys conversation and a good laugh, so I had a great time. Our lead teacher had already introduced the word “vulnerable” to the entire group during announcements to explain the sign around my neck. I started my little group by teaching the words “impulse” and “impulsive.” 🙂

One of the students sought me out during break to have her picture taken with me. I don’t know the circumstances of why she left her home country (Iraq), but my impression is that she cannot return. Her mother has had cancer for several years and now her sister has breast cancer. For some reason she thought a picture of us (me having come to class) would be uplifting or encouraging to her sister. I hope it was. I’ve included the kind of blurry picture – and also hope that’s ok as I haven’t asked her permission. I love how we match (we are both wearing black pants and red tops) and the juxtaposition of the Muslim woman in headwear, my cancer headwear, and the Christian crosses on the wall in the background.

Tomorrow morning I go for labs, so hoping everything is good. I think it will be.

There are several things on my mind to write about, but they need a bit more thought, so I’ll save them for later.

Oh – here’s a little thing. I read this and it made me think about how great my friends and family are because you/they have done so many of these things for me! http://www.huffingtonpost.com/2013/10/07/how-to-help-breast-cancer-patients_n_4031150.html?utm_hp_re…

Thanks for reading and keeping in touch and praying and all of the other things you all do for me!

Well – not a family history item or an entry for “The Book of Me”, but one of my stories anyway, I guess.

 

Sepia Saturday – Recess on the Turning Bars

Sepia Sat May 18 2013Sepia Saturday provides bloggers with an opportunity to share their history through the medium of photographs. Historical photographs of any age or kind become the launchpad for explorations of family history, local history and social history in fact or fiction, poetry or prose, words or further images.

Turning on bars was the favorite recess activity for the girls in my class at Morrison Grade School in Great Bend, Kansas.

My family moved to Great Bend in the fall of 1961, after school had started. It was my second new town and new school in just a few months. I was assigned to Mrs. Nossaman’s third grade class. In my mind’s eye, my view of Mrs. Nossaman is from left of center, about half-way back from the front. I sat between Susan and Ruth.  Susan always looked a little unkempt and I thought her family must not have much money. Ruth was quiet and poised, but seemed fragile. She had had scarlet fever and couldn’t run around and play with us at recess. I thought that James, who lived down the street from me, was mean. I thought that John, who shared the same last name with me, was cute.

Kathy's 3rd grade class copy

Mrs. Nossaman’s 3rd Grade Class, Morrison Grade School, Great Bend KS 1961-62

I’m just left of center in the middle row – light colored hair pulled back and still styled in ringlets and wearing a white blouse with a little clock design printed on it.

House 2535 20th St.

Our house, 20th St., Great Bend, KS

To my left in the picture is the girl who had become my best friend, Katie. Our backyards abutted an alley and she lived a couple of houses down on the corner lot. Every morning I walked through my back yard; turned left down the alley; stuck my hand through the chain-link fence that surrounded her back yard so I could pet her pug, Sir Cedric Pogo III (aka Po); and then went to her front door to get Katie for our walk to school.

Mrs. Nossaman had the perfect cursive handwriting expected of an elementary school teacher. She enforced the rules of her classroom and set high expectations. I don’t remember why exactly, but something about our relationship got off on the wrong foot. She must have called attention to me as the new kid in some way – for not following a class rule or something. Now that I think about it, it may have been my confusion at how to spell or pronounce her name.

LittleHousebookCoverThe wonderful thing I remember about Mrs. Nossaman, though, is that she read to us every day without fail. She sat at her desk or stood at the front of the class and read to us, one chapter at a time, from Laura Ingalls Wilder’s “Little House on the Prairie.” I fell in love with Laura and Ma and Pa and the books about them. And I could forgive Mrs. Nossaman for being kind of mean because this was my favorite part of the school day.

As you can see from the picture above, all of the girls are wearing dresses or skirts except for the girl front and center – clearly a girl ahead of her time. Since the turning bars were the domain of the girls at recess, the issue of us hanging upside down in our dresses was a matter of great concern to our teachers and the subject of school yard chants by the boys. A rule for recess was established that any girl wearing a dress was not allowed on the turning bars unless she was also wearing shorts or slacks under her dress. Sometimes girls forgot to wear the extra layer of clothing and would try to sneak in a turn or two on the bars without being seen by a teacher – or tattled on by someone who would like to see them get into trouble… because it was no fun to stand idly by and watch your friends playing on the bars.

Just look at the long line of children on the bars in the prompt picture if you have any doubts.

Morrison Building Addition

The class portrait above was taken in front of the door that faces this playground. You can see monkey bars and one of those bars you swing across with your hands (what do you call those?) and an open playground that we used for P. E. I remember playing field hockey, softball, and Red Rover there. I also remember sitting and waiting for my turn and one of the girls asking, “What’s wrong with your legs?” because I had bright purple capillaries on my thighs even at that age.

The turning bars we played on are not visible in this picture. They were in a play area on the other side of the building. Our bars were taller than those in the prompt photo. We turned facing forward like the children in the picture. We turned with one knee hooked over the bar. We turned backwards from a sitting position and flipped over onto our feet. And sometimes we just hung upside down by our knees.

I completed 3rd through 5th grades at Morrison Grade School and had barely started 6th grade when we moved again.

I don’t have a picture of my 4th grade class. I can’t remember the name of my teacher. I can’t remember what she looked like. I can’t remember who was in class with me. I have only a few vague impressions of that year. I think I would have no memories at all if I had no photographs!

Thankfully, I have a picture of my 5th grade class to help me remember that year. And, although I do remember the names of the kids I wrote about, I changed them.

One of the first posts I wrote for this blog was about 1st grade: 1st Grade Hairstory: Ringlets, a Peeled Onion, and a Clueless Boy.

There’s the bell! Run on over to the Sepia Saturday playground and see what everyone’s playing today.