I have some swelling in my hands. I innocently thought it was water retention. Yesterday the radiation oncologist and his nurse suggested it may be lymphedema. Remember my rant about this side-effect? Well, I guess I might as well experience all the bumps and twists and turns while I'm on this cancer road trip - it certainly isn't one I want to return to, so I may as well get all I can out of this journey.
So, as a precaution, I have an appointment to visit the lymphedema specialists in a couple of weeks, and I had the privilege of going to Carol's Mastectomy Boutique in Salt Lake City, being fitted with a compression sleeve that I'll wear whenever I travel in a plane, sit for any extended period of time, or whenever the air pressure changes, do heavy lifting or pulling - for the rest of my life, just in case!
What next? What more?
The lady who helped me at Carol's was so kind - I have met some of the most beautifully amazing folks on this journey.
On Sunday I went to church. I looked 3 pews ahead of me, and saw Denise Morgan (not her real name). She and her husband are in their early 70's. They returned to their home last August after spending 18 months serving their Church by reaching out to and mentoring young LDS folks in Arizona, giving them a chance to have a family and a place where they could safely discuss their religious questions. The Morgan's also participated in developing an LDS Institute program where these same young adults could receive a formal education regarding The Church of Jesus Christ of Latter-day Saints.
Shortly after returning home Thomas Morgan was asked to be the Bishop (leader) of his LDS congregation. Usually this calling is given to someone in their 40's-50's, but it isn't unusual for someone older to receive this opportunity. The Church of Jesus Christ of Latter-day Saints operates on a volunteer basis with lay leaders rather than paid leaders. Thomas and his wife said, "yes" to this calling.
At the same time as these transitions to home and church were happening, Denise was having headaches. She received 8 surgeries to drain and repair her sinus cavities.
On Sunday, I saw Denise, and walked up to give her a hug prior to our service beginning. She and her husband are aware of my cancer. I sat down next to her - both of us with shorter than usual hair, reached across to give her a hug, and she quietly said to me, "It's cancer." Oh my; I was so sad, so very very sad to hear this news. We chatted for a moment about where we both were in our treatment plans, and then I hurried back to our pew as the opening song began.
I love music. I love hymns, sacred songs that speak not just to my ears but to my soul. A congregational song began, and the words touched me like they have never spoken to me before.
I stand all amazed at the love Jesus offers me.
Confused at the grace that so fully he proffers me.
I tremble to know that for me he was crucified.
That for me, a sinner, he suffered, he bled and died.
O it is wonderful that He should care for me
Enough to die for me!
O it is wonderful, wonderful to me!
I marvel that He would descend from His throne divine
To rescue a soul so rebellious and proud as mine;
That He should extend His great love unto such as I,
Sufficient to own, to redeem, and to justify.
I think of His side, pierced and bleeding to pay the debt,
Such mercy, such love and devotion can I forget?
No, no! I will praise and adore at the mercy seat,
And testify all my desires He doth fully meet.
(Mormon ending: Until at the glorified throne I kneel at his feet.)
As I had been thinking on the justice, mercy, grace triangle, I listened, rather than sang, and was touched that all 3 are presented here. Denise, myself, others who have been dealt a card they were not expecting, we will be OK. Whether believers or not, we provide each other with the out-stretched hand, we give and receive. Believers - His hand is there for us to reach toward, to grab onto, and we are rescued.
My God is a God of 2nd chances, and 3rd chances, and more. I see these as the gift of Grace. Grace appears as the third card in the Justice and Mercy deck. Grace happens when both of these cards have been dealt and there is still another way. Justice and Mercy are binary ways of thinking - either/or. Grace adds that critical thinking element; life doesn't have to be one or the other, think about it, there is another way.
Along the cancer road, Justice would be the card that says, "You have a good doctor, you are healthy, let's look at your type of cancer and the numbers associated with it." Mercy's card would say, in addition to the Justice card, "You have a great support system with lots of family and friends praying for you and sending positive energy your way." Grace takes these two cards into account and adds, "Learn what you need to learn from this experience, and then let go. Whatever happens is for your own growth."
Justice says, "You must have drawn that card in heaven. We never know what we choose, until it's delivered to us." Mercy says, "God must really love you to give you this opportunity for growth." Grace - "Go and grow."
This is where the God of 2nd and 3rd chances comes in. "Go and grow," is not a one-time card. It's a card we can use over and over again, in fact, we probably will. I don't like blaming God for my "trials," I prefer looking at these as natural aspects of living in this world, a world, in my dogma, that gives us experiences that we can use in this life and as we travel to our next life.
I think of the decisions I've made over my lifetime, not always pretty decisions, but nonetheless, justice, mercy, and grace have appeared as I determine how to proceed. I'm not damned, I'm not saved, but I am given another chance.
I am so grateful today is Friday - and boy, the busy week has flown by (17 radiation treatments down, 18 to go!). I've been gathering motivating thoughts the past several months - those that help me through tough days. I thought I'd share today - to me, they are inspiring. Enjoy, and have a great weekend!
Yesterday morning when I received wonderful news regarding my breast cancer genetics (see below), I realized I haven't explained, in any depth, my type of cancer. So here goes - I've learned the language of cancer over the past seven months. I was planning on brushing up on my Spanish, oh well!
I have Stage 1 Grade 3 Triple Negative Invasive Ductal Carcinoma Breast Cancer.
Stage: Stage is explained as the original location of the cancer and how far the cancer has spread - usually from 0-4. Mine is Stage 1 - there was a visible and palpable tumor, but it had not spread to surrounding tissue or to the lymph nodes, or to other organs (as far as we're aware).
Grade: Grade is a "score" that describes the different types of cancer cells, particularly on level of how they appear and differ from surrounding normal cells. From Grade 1 to Grade 4, with my cancer cells looking different from normal cells. They grow quickly divide rapidly, are disorganized (my cells, no way!), and have irregular patterns.
Triple Negative (TNBC): Cancers, especially in women, have 3 points that determine the receptiveness of cancer cells to particular treatments. These receptors include whether the cells are estrogen (ER), progesterone (PR), and protein receptive (Her2/neu). Determining this means each point can be positive or negative. If the cancer is ER and PR +, then treatment will often include a hormone-therapy chemotherapy medication that is taken on a daily basis for months, because the cancer is a receptor of this targeted treatment.
I have TNBC, or ER-, PR-, Her2-. Because my cancer cells do not respond to hormones, I had to have the chemotherapy that is basically a one chance to kill these cells, because I will not respond to hormone therapy or receptor targeted treatment.
My cancer usually appears in African-American women, younger women (pre-menopausal), and often shows a genetic tendency. It shows in 15-25% of breast cancers.
Genetic testing may be used to determine whether or not the TNBC is genetic. The BRCA test is a blood test, which shows the susceptibility of two cancer genes, BRCA 1 and BRCA 2. I am not, hallelujah, found out yesterday, a carrier of the gene mutation. This is great for my siblings and my children. TNBC often jumps from breast to ovaries, meaning I was facing the possibility of ovary removal, but no longer! One less surgery for me.
TNBC cancer is typically more aggressive, and the risk of "relapse" is higher for TNBC, for the first 3-5 years, then drops below the hormone-positive cancers.
Invasive Ductal Carcinoma is the most common type of breast cancer, and I'll leave it at that!
My first husband's mother passed away on Friday. Martha "Ellen" Stoltenberg Knudsen
was quite the woman. I would say she is one of those 2nd wave feminists
who lived uncomfortably in a patriarchal-dominant marriage. She was a
convert to Mormonism, reared 4 children, and remained independent,
particularly enjoying her freedom once her husband passed away (it even says so in her obituary). When Clark and I
were divorced, and we went to her home to tell her, she looked at me,
pointed her finger at me, and said, "I wish I would have been brave
enough to do that." I don't think she was thinking of us, but rather of
her own marriage. She was blunt and honest like that, with a twist of
Oklahomian humor. She loved language, rich food, fine-art, creating, nature, good books, her children and grandchildren, laughing, and details.
I wish I had somewhere I could share my Ellen
stories and listen to those others will tell. But I know that's not
possible. One quick story here - Clark and I had traveled back east, he
on business, me accompanying him. We had left Tyler and Jenna mostly on
their own, but Ellen wanted to spend time with them. One afternoon Tyler
called, begging us to tell Granny K that he and Jenna were fine without
her. "Last night, she found mushrooms in the fridge. They are old, but she was determined to use them. Mom, she made homemade cream
of mushroom soup. It's gross. Please tell her we're fine with the food
you have for us." I still laugh at his desperate tone. I think Clark
told Ellen they'd be fine if she wanted to go home and sleep in her own
bed and not tackle our stairs.
I was napping at
my mother's last fall, as I was recovering from my lumpectomy. I awoke,
went downstairs (Mom has a wonderful south facing bedroom that is
comfortable and warm), and there sat Ellen, visiting with my mom,
waiting for me to wake up, so she could hear, first hand, about "the
awful news I've heard." I shared, yet we spent most of our time talking
about her still driving (87), and the books she was reading. We read
very similar novels, and it was always a treat to share and discuss our
After leaving our marriage, and thus the
Knudsen family, it was Ellen I missed the most. I guess what I want to
say here, in my journey blog, is that Ellen taught me how to stay
independent and happy (not the wahoo happy, but the content with the
journey happy), even when my surroundings weren't enjoyable. She taught
me that having a life of my own was just fine, and that one is never too
old to learn something new. She taught me that boundaries - including
those from divorce, are not impenetrable, and that love can be
Rest in peace Ellen - I hope you have a great book for this next portion of your journey.
I have eyebrows, nasal hairs, hair on my arms and other parts of my body, and I've shaved my legs, still missing in a couple of other places, including eyelashes, but for the most part - it's growing back.
I've learned to appreciate body hair - it keeps us warm, protects us from some injuries, keeps water and soap out of our eyes, is used as part of a facial expression, identifies us as male or female, and gives us something to do in our spare time - tweeze, shave, blow dry, cut, color, wax, play with.
The hair on my head is pretty awesome. I laugh when I look in the mirror. I've gone from blonde, to bald, to white in 6 months, and while I was going to say it didn't cost me a thing, it did - almost my life, a transformation, and thousands of dollars, although one friend said, "People pay good money to have their hair look like yours." I've had lots of looks these past few months - bald, hats, and now this cut. At a restaurant on Wednesday a young lady said to me, "Your hair is awesome. I'm going to have hair like that in a month." I replied, "Oh, are you having chemo?" She blushed and replied, "I'm sorry. I'm shaving my head as soon as the weather warms up. I love how it's so manageable." And she ended with, "It really looks awesome on you. You should keep it that way." I've had people comment on how bold, sassy, "in," classy I look, with more than one person saying, "Your hair really matches your personality." Ha!
I'm 1/3 the way through radiation, and my body is coming back while still undergoing a major assault. I find it quite interesting to see the 2 happening simultaneously. Our bodies are amazing.
I've been toying with having some folks share their stories regarding cancer. Cameron Von St. James reached out to me a couple of weeks ago, with his family's story. I'm sharing it, below.
On November 21, 2005, my
life changed forever. It is a day that will be embedded in my memory forever.
My beautiful wife Heather found out she had a cancer known as malignant
pleural mesothelioma. That day marks the day that my life changed forever.
Just three months earlier, we became brand new parents after our daughter Lily
was born. I was prepared to become a new parent, but nothing could have prepared
me to be a caregiver for a cancer patient.
The doctor provided
details about mesothelioma and suggested that we seek treatment at a facility
with more experience in this field. We could either go to a local
hospital, a regional hospital that did not have a specific program designed for
patients with mesothelioma, or we could schedule an appointment with Dr. David
Sugarbaker, a well-known mesothelioma specialist in Boston. My wife was
still in a state of shock, paralyzed with fear and unable to decide what to do.
I knew she needed help right then. I told the doctor that we would schedule an
appointment with Dr. Sugarbaker in Boston. This was just one of several
decisions I would be called upon to help my wife make after she was diagnosed
Our lives for the
following two months were completely out of control. Our comfortable
daily schedules ware gone. Just prior to Heather's diagnosis, we both had
full time jobs. However, Heather had to quit her job and I continued to work on
a part time basis in order to be able to care for my family. In addition to
working part time, I had to travel to appointments and mesothelioma treatments, care
for our newborn daughter, take care of our house, the list never ended. Dealing
with all of the daily challenges and a long to-do list started to become
overwhelming. I was so overcome with fear that I would often sit down on the
floor in the kitchen break down crying. I wanted it to all be a bad dream
so badly.However, I never let Heather
see me when I was having a moment of weakness. I knew she needed me to be
strong, so I was always strong and in control in front of her.
Fortunately, many people
would come to our family's aid in the months to come. Friends, family and
people we didn’t even know were there for us. People were there to
comfort us with kind words and even desperately needed financial help.
There is no way we can extend our gratitude to each and everyone who was
there for us. One thing I would like to tell people diagnosed with cancer and
people who take care of them is to never say no to help when it is offered. You
will have too much to worry about, so every bit of help counts. Also, it
is always important to remember that you are not in this by yourself. You have
people you can count on and who will be there and willing to help you and your
family. Take advantage of their offers of help.
Taking care of a cancer
patient is very hard. This is the unavoidable truth. Life becomes hectic and
you will feel anxious and go through periods of time of not knowing what will
come next. This will be a challenge of a lifetime unlike any other
challenge you have experienced. Unlike work, school and other challenges,
this will be one challenge you will not be able to walk away from. Never
let your negative emotions take control of you. Of course, you will hit rough
patches when things get really bad. Even the strongest people have their
weakest moments. Even when things seem impossible, always stay positive and
remain hopeful. Make sure you use all the resource available to you that will
help you keep your sanity and make life easier.
After many years passed
by, things started to fall in place. Heather had already completed
chemotherapy, radiation and undergone surgery to fight mesothelioma. Though the
chances of her survival were slim, Heather survived. Seven years since
her initial diagnosis, her body is still free of cancer.
I have learned a lot
from this challenge. In many ways, being stubborn is a good thing. I now
know that every minute of the day is so important. Within two years of learning
Heather had cancer and taking care of Heather and our daughter Lily, I decided
it was time for change. I decided to enroll in school and study
Information Technology full time.
Dealing with my wife's
cancer and stress over the years helped get me ready for school. With
hard work, I graduated with honors and was asked to speak at my graduation.
Even though some time has passed, I recall the speech that I gave at
graduation. After learning my wife had cancer, had anyone ever asked me
what I would be doing in 5 years I would never have ever guessed that I would
have graduated from college with high honors. We all have more potential and ability to do
much more than we think we can do, simply by believing that we can accomplish
anything we want. Heather and Lily were in the audience that day to cheer me
on, and that was the greatest reward of all.
One of the things I've relearned this past 18 months is that I'm in control of what I choose to carry - and how long I choose to carry it. There's a vast amount of freedom in this knowledge (one of my favorite stories in this regard) -
Two monks, going to a neighboring monastery,
walked side by side in silence. They arrived at a river they had to
cross. That season, waters were higher than usual. On the bank, a young
woman was hesitating and asked the younger of the two monks for help.
exclaimed, 'Don't you see that I am a monk, that I took a vow of
require nothing from you but simply to help
me to cross the river,' replied the young woman.
'I...not...I can...do nothing for you,' said the embarrassed young monk, and he went on his way.
'It doesn't matter,' said the elderly monk. 'Climb on my back, and we will cross together.'
reached the other bank, the old monk put down the young woman who, in
return, thanked him. She left and both monks
continued on in silence.
Close to the monastery, the young
monk could not stand it anymore and said, 'You shouldn't have carried
that person on your back. It's against our rules.'
The older monk looked at the younger with a loving, pitiful smile and said, 'Brother, I set her down on the other side of the river; you are still carrying
I need a friggin' break. There should be some redemption from going through surgeries, chemo, radiation, dry-heaving, aching, etc., etc.
But there ISN'T! Moving forward is hard hard hard - where is the 'easy' "because you've been through such a hell"? I'm too tired to work hard to find me. Tired, loss, weight gain, aging - these should not be showing on me, my face. I'm not 're'covering - there's no 're' in this - no reason, no redemption, no rest, no release, no relief, no reward, no resolution, no resolve.
I get it - it's going to take me a year before I begin to feel my new normal. But that's not fair - why am I the one to suffer the repercussions of cancer? I didn't break my leg skiing, twist my ankle running, tear a tendon lifting weights. Cancer found me - I wasn't doing anything that would invite cancer into my life. And here I am - where is the release, the reprieve? How can Cancer change everything? Why?
And a quick inspirational moment that was sent to me while writing this post; not sure if I have the vision these women have, maybe tomorrow?
I have a friend who lives in pain, much of it from not taking care of herself. I think about my adult years, and I realize that much of the pain I was in was self-induced. One of the hardest things I have ever done was walk away from someone I loved, so that neither one of us were inflicting pain on each other, so that both of us could find peace. This wasn't a noble move - but one of survival, without doing this I'm afraid I would have imploded.
Cancer has given me plenty of time to look outside and inside of myself.
Peace does come from within, and if there's anything I can control -
it's me, nothing, no one else. There is peace in "surrendering to win,"
and "letting go and letting God." Handing control over really means
maintaining control - because I am choosing to give up that control. The pain may still exist, yet choosing to not let the pain be in control is definitely a choice.
My friend, the one in pain, how does she learn to walk away from her own pain - physical and emotional? Can you walk away from yourself - to find peace? Can you walk deep inside of yourself to find it? What can I learn from my pain, from those things that trigger pain?
When I hurt my initial reaction is to react - to find someone/thing to fix me. Reality is this - medication works, but I work too. In my humble opinion, pain is outward, peace is inward.
Kevin Kling is an amazing man. He's not much to look at, but once he opens his mouth and makes you open yours in laughter, you no longer see what's wrong, but only what's right.
My family was first introduced to Kevin at the Timpanogos Storytelling Festival, the year after Cliff's (Jenna's husband) accident. We felt a connection - and he has endeared himself to us. He's been back to the Festival a few times, and I will not miss an occasion to listen to him (well, I did, at Christmas time, but only because I was so stinkin' chemo sick). Today's post is dedicated to Kevin. Kevin has taught me that "you can never judge another man's pain," among many other things. Take a moment and listen to him here.
A good week, a very good week. I've started venturing out into the wild - working on doing one thing a day outside of my exercise, cancer, work, nap, sleep routine of the past 6 months.
I've been to lunch with a couple of friends.
I went to a cancer support group.
I shared with some folks beginning cancer treatment and laughed and smiled with some folks on the healing side of cancer treatment. I'm learning about my story by verbalizing my story.
I haven't worn a hat all week, and today when I put one on, I quickly removed it - I think it's a trigger right now - makes me look like I have cancer. I'm going to wear my S&P proudly.
I shaved my legs! First time in 6 months - not sure if that's a blessing, but at least this shows my body is healing.
I chaplained a little - good feeling to get out of myself and serve others.
I had a pedicure and a manicure.
I made arrangements to visit SoCal in a few weeks.
I made a few mistakes, like trying on swimming suits - miserable idea, horrible results. But I did it! I bought a dress - quickly returned it. I tried to mall shop - didn't make it out of the car, I have eaten too many sweets.
I'm thinking about tomorrow, not just about the next hour.
I'm living in today - nice to have a present and a future.
These are all things that I didn't even have the energy to add to a regular day even a week ago. I don't want to stay holed-up, and I don't want to complicate my new life, but doing, along with the being, is feeling good.
Here's to a happy Friday and feelin' good weekend -
Colen Sweeten, Jr., a cowboy poet and dear friend, had on his business card, "You can still drink from a chipped cup." He passed away a few years ago; I wonder what he would have to say about the Wabi Sabi principle - seems he understood the phrase without knowing the term.
Wabi Sabi means this - find beauty in the imperfections. Appreciate the simple, the pared-down basics. Find joy in the every day. Use what you have, need less, love more. Look for faults, you'll find them, look for beauty in those faults, and you will find more.
I haven't been out much in the past 6 months. I've been forced (awkward as that sounds) to find my joy in my simple surroundings (which includes admiring the paint job on my bedroom walls and watching the sun's rays migrate across the bed). My needs have been basic, my wants have been merely staying alive and healing, and my reliance on others has been for survival.
Yesterday my internet went down - and it was finally fixed at 4:30 today. I've been a little stressed, my work requires my being on the computer several hours a day. I was irritated, angry, and then I paused (this routine happened more than once) - I saw this as time to clean up my 2012 files, sift through 2000 e-mails, do some work that required concentration and time away from my computer. I like my simple uncomplicated way of life (and it can be pared down to basics, if I want). I want! I want to hold on to Wabi Sabi.
I spent some time on Saturday night with a friend. Her husband passed away 3 years ago; he is my age. As we talked about grieving, I mentioned my initial thoughts would be to reach out for support, but instead, I've been reaching in. She smiled and wholeheartedly agreed.
This is what I mean:
For the past several years I've been doubting - and usually when I doubt I do research and ask questions to find answers to my questions. I did this when I went through my pre-divorce stage, when I went through my seeking God stage, parenting, grandparenting, step-parenting stages - seeing what others have to say. And I've learned.
Then cancer - and my boob party, and my desire to be surrounded by folks who could help me with answers. I purchased, and was given, books, was sent website links, was told about alternative treatments, etc. And I love, love, love the support.
I've learned something about myself though, in all of this. And that is I've had to turn inward and find strength from within to make it day to day. The support I have has allowed me time to be pensive, reflective, hesitant.
I thought chemotherapy time would be a chance for me to read my scriptures, read about cancer and its treatments, read about chaplaincy and grief and healing. Yet I haven't read a lot of books, joined discussion groups, watched TV/movies. I haven't had a need. What I've learned, and my friend said the same thing, is, time and space for meditating and reflecting, sorting, sifting, organizing brings answers to questions.
With 6 weeks off and now beginning radiation, I'm coming to the realization that what I've been searching for, for so many many years, is deep inside me. I'm finding that. Being still is a lesson I'm learning. Turning inside, pulling myself up, searching my own psyche rather than the internet, has brought me peace, a time for reflecting, reflecting of the introspective type.
How often do any of us really take the time to stop and look inside? I believe we are "outsource" driven, looking for someone, something, somewhere, that we fail to realize the answer is inside.
I'm Ronda, I'm 54, I have breast cancer, and I'm learning to trust - me.