Nadir - Low Point -

YOU CAN'T . . . 

You want to bet? Do not challenge me by putting those 2 words out to me. If I'm told I can't, then I'll figure out a way I can, whether it's "You can't be happy," or "You can't have your cake and eat it to," or "You can't swim upstream." I will - 

So, let me get this out of my system – shit, damn, hell, and sunny beaches. My white blood count is non-existent, in fact negative, and my red blood count is waaaay low, with my ANC values at 0. And when the PA said, "You can't . . . . " Which means I have to follow these rules, for this specific amount of time, for the safety of my own body, and I am grounded to the house until Monday, when “the Neulasta injection should begin working which will boost your white blood count just in time for chemotherapy on Wednesday.” I know she really means this, and I can't! Lovely! No visitors, no raw fruits or veggies if they can't be peeled - but I can keep exercising (the only thing normal about my life right now)!

I have some major anxiety and nausea, and the beginning of thrush in my mouth and a runny nose (Cytoxin attacks all the membranes, including sinuses and mouth), so I have new prescriptions for these, as well as 4 new prescriptions for “just in case,” which includes more meds for the nausea I've been having, the low constant headache hum, the constipation, and then any symptoms that come from taking these meds (use them all Ronda, use them). This is just to get me through the week, until the next chemo treatment, "We'll consult with our palliative nurse to see what we can do about the steroid, for your nausea, that is most likely the cause for your headache."

I’m having a heck of a time wrapping my mind around all of this - I think I'm a fairly smart teachable person, but this is so foreign to everything I know about health, and I am such a no-drug person, and I work so hard to maintain a peak level of health and fitness, that this cancer/chemo stuff just baffles my mind. I mean, I'm healthy, oops, I'm not, but I was, and I haven't done anything to harm my body, oops, I did - I let the chemotherapy in, but wait, that's to help me, but I have to be hurt to be helped?  In order to take care of my body, everything needs to be killed off with drugs, and then take more drugs to fight off what may continue to kill me! Geez -and I know I've written about this before, and I hope that in continuing to write about this I can figure all this shit out.

I quit ingesting artificial sweeteners about 2 years ago, because of what I'd read, heard, learned, and I've slowed down on my HFCS, white sugar, and I seldom use white flour anymore. But . . . perhaps I’ll go have that Diet Pepsi – what’s the worst that can happen?

The PA reminded me that I need to trust the oncologists, they are pros, they know what they're doing, they'll heal me as they have others, and when I'm finished I will be healthy. The quote on my e-mail signature says, "Sometimes the only way out is through." I CAN, I can - 

LearningU

I work with an amazing group of people. My boss, Marvin Loflin, and I have been working together for almost 8 years. He hired me to be his part-time assistant in 2005. I had applied for this job, had a 15 minute interview scheduled, and when I left our hour long visit, I felt sorry for the woman waiting outside his office for the next appointment.

We particularly united over one point - Bert Wilson, an amazing folklorist, who also had been one of Marv's LDS mission companions in Finland, they'd gone to Indiana together for their PhDs, and had just recently lost touch with each other. It was fun making that connection. 

Marv called Bert Wilson, who had spoken highly of me, and I was hired. Such began our relationship. Scott and I have had the pleasure of being in Marv and JoJean's home many times, we have spent time at their homes in Alaska, and we have been through much over the years, together.

Marv has faith in me. Marv pushes me to reach further, do more, learn. Marv's favorite word is "competent." His favorite questions are, "How do you know?" "What does it mean?" He has taught me many lessons - think first, press send the next morning. Wait it out. Listen. Trust yourself, trust me trusting you.

Marv has had this dream for years - a dream to bring higher education to Hispanic speakers who often don't have the means or ability to reach out on their own, so we develop courses for non-native English speakers, all online. Marv came from a humble background, and his self-made attitude has allowed him the means to reach out to others, and he does.

Marv assembled a group of thinkers and doers, those folks he'd worked with in the past, who he also deemed competent. Folks he'd worked with when he became an innovator as an educator in the mid '90s, being one of the first administrators at a university to offer online education. So now there are 5 of us on this small executive team. He works us hard, holds us responsible, and pushes us to succeed.

We're meeting this week, our bi-monthly face-2-face. I enjoy these meetings. We all work via computer, from satellite offices, or home, so it's nice to see each other. We are blunt, honest, brutal, innovative, thinking, compromising, and willing. We take away assignments and deadlines, and produce. I'll be in those meetings the rest of the week (via computer since I'm grounded, that's another post). Recharging my batteries, thinking, and thanking.

For a peak, go to: www.learningu.com and www.myeslcentral.com. My life!

Vern & Beulah

I lived in Brigham City for several years, as Clark and I started out our life together. Tyler was 8 1/2 and Jenna 5 when we left Brigham for Sheffield, Alabama. We loved Brigham City - a perfect small town with highly educated and practical minded folks, whether engineers or farmers. I developed a wonderful community of friends, and we shared our lives with each other. There were folks of various ages in my neighborhood, and I've shared with you my love for Eve.

Our LDS ward was very close, and I don't remember any boundaries based on age, gender, economic status, education level. We were mostly transplants with our husbands coming to BC to work for Morton Thiokol or folks who had lived in BC all their lives. Many of us didn't have family nearby, so we created our own - we relied on each other for walks, babysitting, advice, canning and sewing help, secrets. Renea, Anna, Moana, Grandma Beulah, Betty, Eve, Gayle, Grandma Shirley, Dawn, Denise, Reed and Barbara, and others became my sisters, my family.

One winter a group of us decided we wanted to be more comfortable with carpentry. A man who taught shop at the high school and another man who taught woodworking, invited us into their garages to work on wood projects. Now I'm not talking jewelry box-sized projects, but big things - a set of bunk beds, an entertainment center, a corner cabinet. We built, learned, laughed.

We often had parties, and sometimes so many folks wanted to come that we had to split up the party into 2 nights to get everyone there! One of the funnest parties I remember was playing slip-n-slide baseball in our unfenced, newly grassed backyard. We placed 2 gallon buckets filled with water on each base, slip-n-slides between the bases, and played ball with a big plastic bat and ball. We had so much fun getting muddy and sliding between bases, yelling at each other, throwing water on each other.

Until - until Vern Petersen came up to bat. Vern was about 5'4" tall, stocky but thin, in his late 70s, and had already lived 7 of his 9 lives. He played the saxophone beautifully and had since he was a young boy. Vern had a beat up body, and could not lift his arms above his shoulders, but he still could hold his sax close to his body and play. Vern's wife, Beulah, was 15 years (or so) younger than Vern, and had learned to put up with his sense of humor and his cumbersome ways. Beulah had been finely-reared, was the epitome of a lady, and she had also lived several lives because of health issues - particularly several bouts with cancer. She enjoyed the parties, but wasn't quite the life of the party as Vern, rather, she always contributed something beautiful for a meal, and would cheer Vern on.
So - Vern is up to bat, Vern bunts the ball, runs to first base, has to jump to get his leg in the bucket, runs to second, with his arms tucked into his body, picks up the bucket at second, runs to third, throws the bucket of water on the third baseman, and slides home, a wet muddy mess and no injuries. We were all cheering and laughing so hard we had no idea where the ball was.

I had the privilege of gathering all of Vern's stories together and assembling them. I loved this man as if he were my grandfather. Being able to present this book of stories to him and his family at his 90th birthday party was a gift for me. Vern passed away about 9 years ago.

Beulah on the other hand, would say, "Well, I've had an interesting life, but I don't know that I have stories to share like Vern's." Yet I loved her tales, her advice, her reflecting. This past spring Jenna and I and Tempest stopped in Brigham City and visited with Beulah, who turned 90 in May. Grandma Petersen, as Jenna and Tyler knew her, was able to sit down and tell us stories - stories of living in Boston during the black-out of WWII, being the wife of a predominant Mormon physician and dealing first hand with many dignitaries in Utah. Leaving one marriage for another, choosing happiness and risks with Vern. Beulah's corner cabinet is still sitting in her spare bathroom - Jenna couldn't believe Beulah had made it!

I got to see, first hand, Beulah's battles with cancer. I was able to take dinner in, and we were able to have Vern to our house to eat multiple times - one time, having baked potatoes, I asked him if he wanted sour cream. He replied, "No, I had a friend who ate sour cream on a baked potato, and he died 5 years later." I still laugh at that. Beulah was a lady as she traveled the cancer road - many many times.

I've been dreading telling Beulah about my cancer. She's 90, a little more frail, and she would not take my announcement lightly. I didn't want to tell her over the phone. She called yesterday evening. "Oh Ronda, I  am so sorry. What can I do for you?" We talked, I told her details, she cried, asked if she could stay in touch, and she comforted me. She's been aware of all of my life changes, and she has been my cheerleader all these years. I know I can count on her now - Beulah - thank you - I only hope I can be as strong and gracious as you.

Storm

I've been so adamant about using the "adventure/journey" analogy, yet over the weekend I did encounter a storm that really threw my journey off track. Let me share!

The evening after my first chemo treatment I had a small headache. The next day it was a little worse, tension'y, and the nurses said to take a Percocet, if needed. I took a couple of Ibuprofens, that was it. On Thursday, a little worse, but nothing I couldn't manage with regular over-the-counter stuff. By Friday morning, I took an 800mg Iboprofen and called the doctor. They said to take a Percocet and call them in a couple of hours. I did, didn't do much. Friday night was hell, but since I was already awake at 4:30am, I went to yoga and enjoyed being able to semi-release the headache for a bit. The beauty of being at yoga is that one of the class members is an oncology nurse! She said I needed enough drugs in my system for them to overlap and begin to work, not just one, then a day later another. She said, "Go home, take drugs, get some protein in your system, rest."

I hurried to the store to get some plant-based protein, then home, just in time to have a crazy anxiety attack, of course brought on by not eating and pain. (I hadn't eaten much this past week, chemo totally took away my appetite.) The horrible pain - think of it as a vice-grip pressing on both sides of your head, pushing your brain to the top of your head, and waiting for an explosion any time - or a migraine x a billion, was more than I had ever experienced, and certainly wasn't what I was planning on - I was waiting for nausea and sore bones! 

All that I wanted was to lay down and die, oh, and my mom! Now I have a want you/don't want you relationship with my mother. She's my next-door neighbor, and she knows too much about me as it is, and crap, I'm a big girl, I'm an adult, I shouldn't need her. I had decided I would only involve my mom in certain portions of my journey, and I would keep her as uninvolved as possible. Except - oh I needed her on Saturday morning. She crawled in bed with me, I curled up in a ball, and cried and cried - mourning needing her, mourning the loss of my normal life, and crying because the pain was so absolutely horrible. After the Percocet and anti-anxiety meds kicked in, I slept. Scott paced the halls, wondering what he could do, full-well knowing his duty was to love and support me.
By then my children knew I was a mess - and Tyler and Jenna were both at the door checking in, and worried. Interestingly - I had a small appetite and was able to eat enough to keep the meds in my stomach.

I really don't know what happened the rest of Saturday, but I made sure I was taking Percocet every 3.75 hours, and by about 10pm they were pushing past the pain. I semi-slept on Saturday night, but I was able to sleep on my side, something I haven't been able to do in a month.

On Sunday morning, I woke, expecting the day to be a normal Sunday, but nope - still pain. I popped pills again, and by around noon, felt a little peace. I went for a stroll around the block, with a friend who kept me balanced, sat on the porch and enjoyed the sun, and slept. Noise of any type has been my enemy, and my home was nice and quiet.

I had dinner at my parents on Sunday night (Scott was working all day Saturday), and 6 year old Tyli made the evening worthwhile.

By then I was down to 1/2 a Percocet, but my anxiety had kicked back in, so I went back to my med cocktail to sleep last night.

However - when I awoke this morning - I was a new woman. A little memory of a headache, a tender stomach, but nothing more! I walked for 40 minutes, had a little breakfast, and now I'm working!
Let me say this though - I will never, never, never do the headache thing again. I kept copious notes, and my doctor will definitely hear my story on Wednesday!
And lastly - pain meds cause constipation - lovely!

So, I think this journey is going have its flat tires, trees falling over the trail, rainstorms, and delays. I also think that sometimes I will not be able to fix these issues that are making my journey hard with kind words and green drinks. I've learned this weekend that you fight chemicals with chemicals, not with pink pruning shears. I've learned I need folks covering my back, but that ultimately the journey is mine to drive. I've learned that being prepared doesn't necessarily mean I have all the equipment I'll need - being prepared also means being teachable and accepting. 

Wrapped in Love

Blanket, throw, blankie, suzzy, nana, TV quilt - I'm betting that you have one, or two, or three! My first "sick" quilt was was made by my grandparents and aunt Vonda, and presented to the family as a Christmas gift. It was a Raggedy Ann and Andy cotton print on top, and red checked flannel on the bottom, tied with red yarn. Only one problem - there was one blanket and 5-7 of us! We loved cuddling up in that blanket whenever we were sick, and that blanket was the first thing we asked for, knowing it was saved for sick days. I eventually inherited it, and it is tucked away with a few other childhood belongings, now too precious and worn to use.

My mother, seeing how much we loved this small (probably 36 x 36") throw, eventually made all of us our own. Mine is green and white, with eyelet trimming. Mom has continued with this tradition, making all of her grandchildren, and even great-grandchildren blankets. She's spent the past few years making Christmas quilts, in that same size, for the grandchildren. Can you imagine snuggling in that blanket from Thanksgiving to Christmas with warmth, hope, memories, and expectation surrounding you?

After marriage, I continued this tradition, making a throw for Clark and I - one big enough for the two of us, but light enough to cuddle up in all alone. When I became pregnant with Tyler, and then Jenna, the quilt I wanted however was the sick blanket or my green eyelet one - so many memories which brought so much comfort.

I made blankets for Tyler and Jenna, as did my mother, and so they were constantly surrounded with cuddles. In addition, they both had their own blankies, something they could drag around the house, turn to for solace, and hold while sucking their thumb (Tyler), or fingers (Jenna). These blankies were a precious commodity in our house - they never went to bed, took a nap, watched a movie, and sometimes wandering outside without them. Security blanket - I like the sound of that.
More than once the blankets would be misplaced, or dirty! Anticipation of finding or washing that blanket was high, and much relief when found or dried. I always kept doubles of the blanket, just in case!

Tyler had a favorite blanket, and while living in Brigham City, it was misplaced, or lost. Tyler could not be consoled! He cried and cried. We drove into town, stopped at one store after another, as he felt the blankets to see if any of them would suffice. Not a one did. So we ended up at the Deseret Industries (a Mormon Salvation Army) where he touched many blankets until he deemed one appropriate! There is a tattered piece of this blanket left - and it has certainly been memorialized.
One of the more difficult weanings came, not from nursing or diapers, but weaning the kids away from their blankets - I mean, how long can a child be seen carrying their blanket to church, preschool, or the restaurant?! So there were boundaries placed on those blankies - only at home, only in your room, only at naptime and bedtime.

Through all of this I have been a curator of old quilts, ones with historical significance, rather than comfort. I have a couple of crazy quilts, more than 100 years old, many quilts, several quilt tops and blocks, yet my favorite - one hand-pieced together with faded fabrics, backed with hog feed sacks, and stitched together with the thread from that feed sack - it is priceless. I've often wondered who snuggled in these quilts, and if they were kept warm and comforted.

I also quilt, beginning back to tying quilts with my grandmother, mother, friends, neighbors. I prefer hand-quilting, so many of my pieces are small, but I do have a quilt that is king-sized, over 100 hours put into the quilting, stitched together by friends and family. It is also tucked away safely. But the small pieces I've made - oh, they are certainly hanging on the walls in our home!

It's amazing the things you learn about women when your huddled around a piece of fabric, a wonderful time to share, to learn, to bond - isn't that what quilting, blankets are - a way to bond?
While living in Springville I became friends with Zora Mae, in her 90s and nearly blind, she spent her days sewing blankets together, and giving them to others - Primary Children's Hospital, humanitarian efforts, and to everyone who came to her home. She made more than 1000 throws in 10 years. I have three of them, the purple one in the photo is a gift from her.  

Blast forward many years, and Scott and I are both cuddlers. However, I love the security of a warm, heavy blanket, and Scott sleeps on top of the covers, with a light fleece throw, occasionally. We've compromised, and that is where throws have come back into our lives.

And this leads me to the past year. I've been in more pain in the past 13 months than I could have ever imagined. And what I reach for is not a funny movie, but a blanket, one that will comfort me, warm me, give me security. Yesterday, with my chemo headache pounding (oh, it will go away in about 48 hours), I found the sun in my bedroom, climbed onto our bed, and looked at my comfort-blanket options. A beautiful pieced quilt made by my sister, Sheri, and her daughter, Audrey (neither would call themselves quilters), a lovely off-white "minky" with a soft backing given to me by Autumn and Daniel, a green fleece purchased at Eddie Bauer years ago, or the lighter-weight $3 fleece, that fits so well into a suitcase, the new turquoise minky and fleece throw recently given to me by a friend who is a breast cancer survivor who said I would need a warm blanket during treatments, or Zora's purple blanket. Always I need warmth - warmth memories give me, history - the love put into each stitch by a blind woman, and scrappy - nothing expensive used to assemble this blanket, just lots of love and dedication.

So - my grandchildren now have blankets - Christmas ones made by great-grandma Walker, fleece throws and quilts by me, crocheted blankets by other grandmothers. A while back I was at Tyler's and Meili's, helping Tyli and Keegan make their beds. Tyli had made a nest out of her nanas, and then settled herself in this nest to sleep. Ava won't leave the house without two or three, and Keegan, although he's a tough three year old boy, loves his - and although these are similar in textures, they definitely know which one is their's. Jenna and Cliff's Tempest has her own style. She loves the soft soft bamboo blankets. And we have a suzzy here for naptimes and cuddles.

All of these, whether store bought or hand-made are pieces that evoke the memories of their origin, the giver, and the thoughts gone into the giving.

Blanket from sister Kristin. Love it -

First Treatment

Not as bad as I was expecting, but I certainly didn't know what to expect! Nurses kind, doctor visited, Scott patiently sat by my side and read. They said I will be sick and tired starting on Friday - so we'll see. I'm supposed to track all symptoms, including energy levels - now more thinking about myself - crap. 

I have a killer headache, started last night, and when I went in for my Neulasta injection this morning (which is to boost white blood cell counts and make my bones and joints ache like crazy), they said the headache could be from the 2 types of chemo, and only should last 48 hours! 

The good news is veggies are OK - raw! They need to be rinsed, and I should stay away from them on days 7-10, which are the lowest days for white blood cells. I was so worried about this - I've been a vegetarian for 20 years, and I could not wrap my mind around eating only cooked vegetables, or peeled. The thoughts of opening a can of fruit cocktail make me sick.

The other news is that I need to be hyper-cautious about visitors, grandchildren on days 7-10, and no animals - at all. The nurses said to use lots of hand sanitizer (hanitizer to our family -thanks Tyli), invite everyone who drops by to pick up a Lysol wipe and do some house cleaning, or stand on the porch for a quick visit.  

I was brave (hell, I should have no fears and no shame now).

Ready, set, go!

About the time of my divorce I was reading a newspaper and found this phrase,

"As you make life transitions, it's important to know 2 things: where you want to go, who you want to take with you, and then begin your journey."

Simple! I want to go to Health, I want to take my friends and family with me, and today is step 3 in this breast cancer journey.

Thank you ALL, for your kind words - Facebook, e-mails, cards, calls, prayers, thoughts, gifts, gestures. This world really is a beautiful place, and I am constantly overwhelmed at your beauty.

Last night at the American Cancer Society's support group, the moderator said, "Decide now to not do, to ask others to do for you." Several people reaffirmed the importance of that. Putting this into action is going to be tough for me, but I know the people on my journey are willing to walk with me, if I only ask.

Away WE go! My love -