Monday, September 17, 2012

Fight Like A Girl!

This is for my friend who just had surgery, a bilateral mastectomy. My 32 year old friend who had to quit nursing her 3 month old baby girl, cold turkey, two weeks ago when she had a biopsy and diagnosis of breast cancer...who will be starting chemotherapy soon, and radiation after that...who has two other young children who are probably wondering why their mom is not the one who has been picking them up from school and friend's houses.
This is for you, dear friend.
You are not alone. Never alone.
Now strap on that pink armor, fellow warrior, and fight.
Fight like a girl!
October will start in a few weeks and with it, Breast Cancer Awareness month. Be prepared to be awash in pink. Let it remind you that you are surrounded by legions who are fighting for themselves or their loved ones.
Trust that you, your husband, your children, your family and friends are stronger than you know.
Many of those helping you are unseen. Let yourself feel their strength and company in times of pain, confusion and despair. The veil is thinner than you might think.
Whatever you are going through, we are with you. And Christ has felt it all. This is all part of the Atonement. Let its healing powers consume you. Let countless prayers being said for you bring you comfort. Miracles might not come the way you expect. Just let them come.
And just in case you need a reminder of what you can do, I am making shirts for your kids to wear.
They will all say the same thing.
"My Mom Fights Like A Girl!"

Sunday, June 17, 2012

Going To Pot

Pardon my French, but this oral chemo medication is kicking my derriere. Lucky for me, I have enough derriere to be kicked and still plenty left for cushioning when I sit down.
The hot flashes, the nausea, the occasional panic attack, the joint pain in places that I didn't even know were joints, the sleeplessness, the weight gain...all of it has become much worse.
I live in Colorado, where medical marijuana is legal. Not to get on a soap box or anything, but this whole justification for legalizing pot for everyone because of medical needs is a crock.
Does that make it a pot crock?
Sorry, that was a mommy joke.
Most of the thousands of medical marijuana permits that were issued in the months following legalization were for young people, nearly all of the permits coming from only a couple of doctors, many of them having the reason of "being stressed out". One said "I get stressed out when I can't get pot". If marijuana is going to be legalized, at least tell the truth about why. If it is going to be easy for anyone to get it, then treat it as a controlled substance and put the same restrictions on it that apply to liquor and narcotics, and second hand smoke.
Okay, I am off my soapbox.
I met several people at the cancer center who used medical marijuana to deal with side effects. One was a young man who was dealing with brain cancer. He said he regretted smoking for 20 years before he was diagnosed, that he mostly liked the marijuana because he missed smoking, and that there were other medications that would be more consistent in treating the pain and nausea, but he liked smoking. Another patient was battling a second recurrence of breast cancer, had lost an eye to surgery during the first recurrence, was learning how to walk again after surgery for the second recurrence, and was using marijuana in pill form to deal with side effects. She had also been a long time smoker, and did not want to return to any kind of habit like it.
I appreciated them honestly sharing with me. The smell of pot makes me nauseous, and since there are few restrictions on where people can smoke it, I run into those fumes in many public places. I let them know how hard it has been for me to deal with that, and they assured me they were aware of how pot impacted them and those around them, and used it in private. I think we each need to find our way to safely deal with our burdens, and try not to add to the burdens of others while doing so.
My wonderful niece asked me, if it would really help me with the side effects of chemo, wouldn't I be willing to give medical marijuana a try? I told her that all my efforts right now are to try and extend my life. I don't want to do anything that dulls my thoughts or feelings, or checks me out of life.
One of the ways I see gifts of grace in my life is the reminders that what I am dealing with is not more than I can handle, that things could be much worse and I would still choose my own challenges, that when I need strength or help, it is there if I am open to it.
So I am glad for ceiling fans and air conditioning, for yoga breathing, communication and stress relief tools, for massage therapists, for really good shoes, for Vernors ginger ale and nutritional supplements, and especially for the ways I feel the kindness, prayers and support from others. My heroes are those who have been through this, even while I have known them, and done so with grace and courage.
And Michael, bless him, is right there through it all. Here it is, Father's Day, and he did more work on today's dinner than I did. On Mother's Day I didn't have to lift a finger.
I look in the mirror and see the full physical impact of all this. He wraps his arms around me and loves me no matter what kind of day it has been. Not always an easy thing to do.
And I get messages from friends at unexpected times. Here is a recent one from Melanie that gave me some laugh out loud therapy. I'm not sure I could enjoy it as much if I were stoned.
Enjoy.



Wednesday, June 6, 2012

Firming the Foundation


There is something wonderful about being in a room with women of all ages and backgrounds who share a common desire to honor each other, wherever we are on our journey of faith, and share our stories that could make a difference in that journey.
I got to do that in two places last weekend.
Last weekend I was able to go to the Rocky Mountain Retreat with other Mormon women. We were able to share writings, ideas, experiences, music, and, most of all, faith.
Faith in our gifts, our heritage, our strength, our knowledge, our loved ones, our connection, our church, our God.
Then I got to have a similar experience in Relief Society at church on Sunday.
Yes, I know. That does not happen for everyone, every Sunday.
I mentioned in my last blog that LDS wards are determined by geographical boundaries. You might be in a ward with others who are similar to you, or very different.
Some people like being around others who are different. They enjoy hearing various ideas, and learn from other points of view. Others prefer to be with those they agree with, and might feel nervous or even a bit afraid around those they perceive as different.
I think the Gospel of Christ asks us to see how we are all connected, coming from loving Heavenly Parents, and will find our greatest joy embracing each other with all our differences and sameness.
But that is not always easy. So we are all on a journey together. Sometimes we are helping each other, sharing the burden. Sometimes we listen to our fears, and throw up obstacles to those we think we need to fear.
It would be wonderful if every moment spent in church is one where all feel honored, acknowledged, loved, strengthened, fed, their burdens lightened.
But church isn’t for those who have already completed the journey back to God.
It is a place we can go to renew our promise to turn to God, to study together and find out that we each have our own way of interpreting scripture, to repent and forgive each other even when we don’t feel like it, to serve people we would usually not choose to be around, to struggle together, to learn to love each other in the face of our failure, and to do this while respecting the organization and structure created so this can happen worldwide.
It is human nature to connect religion to politics, to cultural and ethnic traditions, and to justify divisiveness, even war, by claiming to know who is loved and not loved by God. It is human nature to even connect religion to taste in art, books, hairstyle, clothes and choice of movies and television.
All this can make for an unpredictable experience at Sunday meetings.
But in the lifetime of my church attendance, I have learned that I usually find what I look for at church. I find harsh judgement and intolerance when I look for it, I find acceptance, compassion and love when I look for it, and sometimes that shows up in the midst of the intolerance.
Again, it is all part of the journey.
We all want to be honored and heard and included. While it frequently does, that might not always happen at church. It doesn’t mean we don’t belong there. Each of us can learn to honor others there.
And we can express what is not expressed at church in other places. I have book groups, discussion groups, political meetings, forums, conferences, classes, blogs, facebook….each gives opportunity for discussion and conversation. I find myself drawn to all ways that strengthen how I can live the Gospel in every aspect of my life.
The Rocky Mountain Retreat did that for me. Friday evening I got to hear readings from Joanna Brooks, Phyllis Barber, Dani Dubrasky, and was honored to be asked to read from my essay “A Pope Story”. On Saturday there were wonderful presentations from Joanna Brooks and Sheila Taylor (thank you thank you thank you to them), a long walk with my daughter Charlotte where we talked about the Relief Society lesson I would be teaching, and she helped me find a good direction for it, then a fascinating question and answer/discussion session in the evening with Joanna and Sheila leading. Such generous sharing of so many different faith experiences. In between the presentations, the fabulous food, the small group discussions, we made music. There is no way to describe the experience of singing hymns after learning to make a drum circle, so I will just let you see it for yourself. That's my Charlotte at the keyboard.



Every gathering needs music and food.
Then on Sunday morning in my ward I taught the Relief Society lesson, and was overwhelmed again with the generous way sisters there shared their experiences of faith and love for each other.
One of the discussions at the retreat was about what we saw as the greatest concern for Mormon women worldwide. I think it is learning to see that we are all connected, no matter where or when we live, what our culture, religion, gender or country, we are all a part of each other through a God who knows and loves all, that we are loved and accepted more than we can comprehend. It would be a good foundation for making a difference in the world.
Thank you, dear sisters, for making a difference this weekend.
We are given and give much, our foundation is firm, and the gifts of grace are amazing.

Sunday, May 20, 2012

The Bishop's Wife

That title refers to one of my favorite movies with Cary Grant, David Niven and Loretta Young.
As of today, it also refers to me.
Mike was sustained as the new bishop of our ward today. For those who do not know what language that last sentence is, I will translate some Mormon Speak...
The LDS church is basically divided into congregations called wards, and groups of wards called stakes. Each ward is led by a bishop, his two counselors and his executive secretary. This group is called a bishopric. The stake is led by the stake president and 2 counselors. The LDS church has a lay ministry. That does not mean we spend lots of time napping (although I have seen plenty of nodding off going on during church). It means all of those who serve to meet the needs of the wards and stakes do so without pay.
As I have said many times while serving, "You couldn't pay me enough to do this job. I will only do it out of love." Sometimes the love I am feeling is only for God, and that leads me to want to follow His admonition to "do it unto the least of these". Other times, I know I am one of the least of these, that mercy will come where mercy is offered, and I want to be among those who are willing to serve as well. My formal calling right now is counselor to the president of our women's organization, the Relief Society, which handles education, welfare and service needs.
So we don't have paid jobs in church, we have callings. We receive callings (a request to serve in a particular way) from church leaders, who can receive inspiration through prayer and promptings as to who to call to a position. It is not something that can be lobbied for, or applied to. Well, it can, but that is not a good idea and usually doesn't work. Over the last 6 months, Mike actually had some promptings that this might happen. He tried really hard to apply for another job that would require us to move. He called it "pulling a Jonah". None of his attempts worked out. He just got thrown out of the belly of the whale onto the beach.
After we receive and accept a calling, the congregation is given an opportunity to sustain us by raising their hands to show support.
One of the most difficult, involved callings in the church is that of bishop of a ward. One that compares to it is that of bishop's wife.
A stake president can only call someone to be bishop after they have been approved by the First Presidency of the church. Some suggest that the potential bishop's wife is scrutinized more closely than he is. I doubt it. My years as a hippy during the 60's should have kept Mike out of consideration if that were the case.
While I was consulted extensively, there is no formal calling for me as bishop's wife. No instruction manual at all. That does not necessarily put me at a disadvantage. Mike has several manuals and lots of training available on lds.org. But he still has a deer-in-the-headlights look of "I have no idea how to do this". I get to rely completely on prayer and promptings. He has that... along with all the instructions swirling around in his head.
That's understandable. He is now in charge of the spiritual and welfare needs of everyone (I do mean everyone, Mormon and non-Mormon) within a certain geographic area. Those needs are rarely predictable, or on a schedule, and never at a convenient time. All this while he continues working his regular, more than full time, high stress, I-don't-do-this-out-of-love-I-do-this-for-a-paycheck job.
And the ward is determined by geographic boundaries. We don't go to a church we pick because of who we agree with or are friends with. We go with those in our area, and we learn to love and serve and be served by them. We do it that way because it teaches us how to give and receive love, even when it is not convenient, even when we don't feel like it, and especially because of the miracles that happen that can't possibly be predicted.
So, in a nutshell, Mike's church calling is now to help people find their way home to God, and experience a bit of heaven here while in the trenches of life. I have known Mike for over 28 years, and been married to him just under 28 years. Through those years I have seen him go through hell (sometimes I'm the one who put him through it), and choose to follow Christ out of it. He has chosen to acknowledge his jerkiness and stupidity that all humans have, and learn love and mercy and strength and faith .....and I could go on but I don't want to sound too biased.
He will do a great job as bishop. I don't think he knows how to not do a great job.
Me? I'm still figuring out my job description. I do not need to know any of the details or private information of ward members to know we are all carrying our own burdens. These ward members have been there to share my burdens, and make them lighter. We all need to be reminded that we are never alone, and we are known by name and infinitely precious to God. I can do that.
One of those ward members is my bishop, my husband.
Share the journey, Michael. You are known by name. You are infinitely precious to God. You are never alone.
Don't worry, I'm here to remind you.

Saturday, April 21, 2012

Share the Love of Creation

A great mixed media artist, Michelle Allen has a wonderful blog and she is hosting a great giveaway. Check it out at...
http://www.close2myart.com/blog/
I will have a new post very soon. The side effects of oral chemo are tough, but I am dealing with it by making things.

Tuesday, February 14, 2012

Worth Living For

How do you get someone excited about life?
You give them something they can look forward to.
I am glad I have people who remind me of many things worth living for.
When my daughter Charlotte was born over 26 years ago, I got a breast infection that turned into toxic shock syndrome. Mom came to help take care of me while Mike took care of Charlotte. Within hours I was in so much pain, and so out of it, I told my mom I was ready to die. She said in her most I-am-your-mother-and-you-will-doo-what-I-say voice, "No, you will not die! You have a new baby in the next room and she needs you. You need to be here to take care of her."
Something in the back of my fevered brain remembered, "Oh yeah, I have a baby. I want to hang around  and get to know her."
Things got worse before they got better. I was soon in the hospital. The doctors told Mike they didn't think I would make it. Miraculous, and I mean miraculous turnaround. I spent 10 days there before being able to go home and recover completely. But the whole time I was thinking of getting strong enough to take care of Charlotte, and get to know this amazing little baby.
She and my mom called me back to life.
5 years after that when I was pregnant with Joseph and daughter #2 Anna was 3, she caught a cold. We thought she had gotten better, but didn't realize the infection had settled in her lungs. By the time I got her to the doctor she was taken directly to the hospital with serious pneumonia.
While I was sitting next to her hospital bed, trying to calm her fears, and feeling total mother-guilt for not realizing how sick she was, I saw that "I give up" look in her eyes. It was too scary, too painful, too hard for her to keep trying to breathe.
I had to think of something that would get her excited about life, get her to want to keep breathing.
I asked her which videos we wanted me to bring her from home, and I told her that all the limits about only watching one movie a day didn't apply in the hospital. I started talking about her favorite stuffed animals, and the trips we had made to Sea World and Disneyland to get them, and how we would go there again, and that I would bring all the stuffed animals for her to have on her hospital bed. Then I promised her new markers and crayons and drawing paper so she could make all the pictures she wanted while there. And I promised she would never be alone, either her dad or I would be there with her day and night. And we would read to her all she wanted.
The doctors told us she would be in the hospital at least 7 days. She came home in 3, and recovered quickly. She wanted to be able to play again.
We reminded her she had something to live for.
2 months ago some dear friends of ours in Utah invited us to join them for a weekend in St. George to relax, visit, bike, hike and just be able to spend time together. They were willing to move it to the last weekend in January so I would be as strong as possible and so Mike could come. They said if I came, I could just sit and they would make sure I would relax. This invite came when I was at my radiation treatment weakest, when I could hardly walk, and I was wondering how I would handle another surgery in January.
But these friends are some of my favorite people in the world. I miss them and love spending time with them whenever I can. I started feeling stronger just before the surgery, and worked hard to recover well after. That weekend was something I wanted to live for. I wanted to be strong enough to at least ride the bike a little, and go on walks with them.
The timing was perfect. The sides effects of the oral chemo had not yet taken over, and I had recovered well enough from the surgery, so I was able to go on a long but not too hard hike. And I was able to ride the tandem with Mike through stunning Snow Canyon. It felt so good to ride again, through such beautiful scenery, I wanted to yell with joy. And I loved seeing so many dear friends, visiting with good people who are doing so much good in the world, and having a great time with them.
These wonderful friends had given me something to look forward to.
Since then I have continued to walk and to ride the bike on the trainer. But the side effects of the oral chemo have gotten much worse, and some days the thought of five years on this medicine seems like forever. I know that I will make it through this, I know there are harder things, and everyday I see so much to be grateful for.
Best of all, people I love give me so much to live for. My kids are each moving on to new stages in their education, work, lives. My family and friends keep reaching out to me with patience. And Mike is there, always. We always have an adventure planned. Some involve scuba equipment, some involve sitting next to each other eating a bowl of popcorn while watching a movie, some involve talking about the books we are reading, some involve holding hands while we walk the dog and talk about jersey designs for the next bike event.
Mike makes them all become something to look forward to, all worth living for. I think I will stick around for that.

Monday, January 30, 2012

I Canyon, Can You?

Here is how you know you are hiking on slick rock. It takes as much time and effort to go down as it does to go up. And the shortest route between 2 points is never a straight line.
Here is how you know you are hiking slick rock in Canyonlands National Park. Every step is worth it because each step brings stunning views.
That said, I am very glad we didn't go there until Thursday, because as of Wednesday I did not yet have enough strength.
When I found out that Mike was arranging to go with me to visit friends in Utah, and he suggested we stop at Canyonlands on the way and watch the sunrise through Mesa Arch, I decided I would try to increase my walking each day up to 3 miles. Mesa Arch trail is less than a mile.
Then Mike told me about other places in Canyonlands. False Kiva trail is about 3 1/2 miles. Horseshoe Canyon Trail to the huge pictographs, Mike thought it was about 6 miles.
Mike has been to all of these places, but I still am a bit skeptical when he says it is a slight climb, or it is only a few miles. I learned this when he always would say something is not very spicy so I would taste it and then have to spend 20 minutes quenching the inferno in my mouth. In other words, a hike that is easy for him might be easy for me, or it might require every bit of effort I can muster.
So I looked at the official description of these hikes. I had to take Mike's word for it on the False Kiva since it is not an official trail. Park Rangers will disavow any knowledge of it.
I felt ready to do Mesa Arch at sunrise, and then do the False Kiva, but I didn't think I would be able to then do Horseshoe Canyon after that.
Mesa Arch at sunrise.
We stayed in Moab and got to Mesa Arch before sunrise. There was one photographer there before us. Getting photos of slick rock formation vistas at sunrise and sunset is a big deal. He and Mike started talking about what they had photographed in the parks and the number of their megapixels and comparing the sizes of their cameras and so on. I found a place to perch next to the arch and enjoyed the view, which changes each second as the sun rises.
Then, as the sun came into view, it was so still and quiet.
Perfect.
Then there were more photographers, and tourists to come and enjoy it, and we were ready to go.
View from False Kiva
Then we went to False Kiva. It was another stunning view. And the hike was the way Mike described it. It was about 3+ miles. We walked through a wash on a plateau, then an easy descent down a cliff face below and to the other side of an alcove, then back up into the alcove to find these native structures that are centuries old. But the best part is the view.
By the way, the photo can't do it justice.
Then we went on a short, less-than-a-mile hike to the huge Salt Upheaval Dome. Very dramatic and also as Mike described.
After that, I was ready to believe that Mike was describing these hikes with some degree of accuracy.
When I continued to feel strong and able to be active over the next few days, I suggested that we might try to do the Horseshoe Canyon hike on the way home. I have wanted to see those amazing pictographs for over 15 years. And I thought if I could do 5 miles of hiking that first day, with some descent and some climbing, I should be able to do 6 miles a few days later after doing more hikes and riding the tandem.
Big mistake.
It is easy to forget that even as I am getting stronger, I need to give my body a rest day every once in a while. It's easy to forget that even if Mike remembers some hikes well, his memory of conditions on another could be way off. It's easy to forget how quickly it gets dark at this time of year. It's easy to forget how exhausting it is to hike slick rock in the dark.
Our day became memorable because of all the things we forgot.
It was a gorgeous day and a beautiful drive to the trailhead. I was reading all kinds of information about the pictographs of the canyon and the experts saying these were ceremonial and religious. I think some were, especially these Horseshoe Canyon images that suggest visitations of divine beings. But any mother of kids who love to paint knows that some of these might have been done by energetic kids and adolescents who were seeking a creative outlet. How could they resist rigging up a tall ladder and displaying their stylistic talents with family portraiture on those dramatic canyon walls?
Each thing I read gave a different estimation of the hiking distance, all over 6 miles. I got a little concerned, but also more excited to see the images.
By the time we got started on the trail, it was past three. The sun will set at 5:30. We didn't think about that. We were about 1/2 a mile into the hike, and I was thinking we will turn a corner and be at the canyon floor since Mike said it was a slight descent, but then I got my first glimpse of the full view down to the canyon. We had a long way to go just to get to the bottom. Then a long walk to get to the best pictographs. I should have aborted the mission right then. But I didn't.
Another big mistake.
We did make it to the end of the canyon before dark. The pictographs were better than I could imagine. But by then my feet and knees were really hurting, and so were my incisions. I wondered how I could feel so wiped out if we had only gone 3 miles. And I was wondering how we were going to get out of there.
It got dark soon after we started back. Mike found a walking stick for me and tried to light the way with his small flash light. But it was harder than I thought it would be and it seemed to never end. Mike practically hauled me out of there. Even with the best equipment and conditions, it is not a good idea to climb out of a canyon in the dark.
I was so glad to see the car. It was late by the time we got to Green River and most food places were closing. I was so hungry by then I was even willing to get a sandwich at Arby's.
Another big mistake.
The canyon is well worth the trip. The pictographs are stunning, some are over 7 feet tall. But I suggest going in the morning with plenty of time and energy. This time Mike took his GPS so he would have an accurate mileage reading. So for future reference, the "slight descent" is over 1 1/4 miles, then it it 3 more miles along the canyon floor to get to all the sites. Total...8 1/2 miles.
I think I will take more than one day of rest this week.

Friday, January 20, 2012

I'm Out of Estrogen, and I've Got A Gun

Okay, the first part of the title is true, the second part isn't. I don't have a gun. Don't want one.
So the next stage of cancer treatment has begun. I mentioned in a past blog post that there is this amazing test that can determine the genetic makeup of the tumor, and all kinds of details about it, including what it likes to eat. This tumor fed on estrogen, ate it all the time, liked to consume it even more than I like to consume fine chocolate.
Obviously beneficial treatments are surgery to remove the tumor - done - and radiation treatment to kill off cancer cells in the tumor area - done. Now we get into a statistical wilderness. I might be in the 84% of women who have this kind of tumor and this kind of treatment who will not have a recurrence in 5 years even with no further treatment. Or I might be in the 16% of women who will have a recurrence unless I do further treatment.
More tests, more scans, more discussions with doctors, more questions, more prayers. Any follow-up option includes being on medication for 5 years. The one that is most effective is considered a long term chemotherapy that would shut down estrogen production from my adrenal gland. That combined with surgery to remove my ovaries would shut down the cancer food source and starve any remaining cancer cells. So when I gather all this in and learn about all the possible horrific side effects, and find out that this will lower the chance of recurrence to 6%, I must admit to having some "My Brain is Melting!" moments.
I considered just risking a recurrence, but I found out that when cancer recurs, it does so with major attitude. It comes back with a vengeance. I would have a better chance surviving a whole new cancer than a recurring one.
Several times a day I meditate and pray for strength and guidance. I have learned to be open to that coming in any possible way. While I was trying to process all this information and make some choices, I was meeting new patients at treatments each day, and they would share their journey with me. One amazingly positive woman is on her 48th round of chemo. Another woman is dealing with her second recurrence. This is taking on life in the trenches. Then I woke up one morning and realized that if taking on this next stage of treatment will give me even one more day with Mike, and with my kids, it is worth it.
I had the surgery 2 weeks ago, and started on the medication the next day. Unlike easing into menopause, this is like taking a high dive off a cliff. The worst side effects might take a while. Since I am healthy, and more active as my strength returns, I am hoping things won't be severe. For now, instead of hot flashes, I seem to be having extremely warm spells. If suddenly feeling like the world is going to end and  sobbing uncontrollably for 2 minutes, then feeling fine again counts as a mood swing, I've had a few of those.
Poor Mike.
My current mantra is "There are worse things". I need to remember to just say it to myself. I think I said it to others too often when there were 30 of us gathered at my mom's house for Christmas and anyone happened to complain about anything. Oh well, with family it's all relative.
That was a "Mommy Joke".
Anyway, I hope I can learn to be as patient with others as people are being with me. I have come to learn that everyone is waging their own battle.
If I act weird for the next few years, this is just one of the fierce battles I am waging.
And I promise I won't get a gun.