New Life Philosophy

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming "Wow! What a Ride!”
― Hunter S. Thompson

I stumbled across this quote last week, repeated by a 5-time cancer survivor. Recently I have been getting pretty high strung about all the things on my body that are breaking. It can become a bad habit to think that every itch and sneeze is a sign that the cancer is spreading.

A few of my recent panic attacks:
- one night my arm went numb, especially in my last two fingers. Does this mean I have a blood clot? Or a tumor in my neck? Turns out it is a common nerve pinch corrected with b6 and not leaning on your elbows.
- recently I've had strange episodes of feeling light headed. Is it a brain tumor? No. It's just dry eyes exacerbated by dry contact lenses, corrected with eye drops.

I keep feeling like I am a lit candle that is desperately trying to catch my melting wax and reform it to my perfect original shape. Stressing about each little body failure is incredibly draining. Especially when many of them can be dealt with and have nothing to do with cancer.

Well I refuse to let my life be dictated by fear. I'd rather celebrate my melting body as a sign that I am ALIVE! God gave me this body to enjoy. Not to abuse, but not expecting me to preserve it either. He intends to give me a new (or a perfectly refurbished) body in the life to come. It's OK that this one doesn't last forever - it wasn't meant to.

So I'm going to try an experiment to improve my thought pattern. Every time I have a scary cancer thought, I'm going to add to it 2 (or more) thoughts about the wonderful things my body can still do and enjoy. When I feel a random pain that causes worry, I'm also going to appreciate that I still have that body part and that I can still feel it and take a moment to notice all the things that body part does for me.

Who wants to get to the grave in an unused body? Not me! Body malfunctions are frustrating, but also a great opportunity to appreciate all the living I have done and that I am still ALIVE.

Breakfast-In-Bed on Mother's Day

I posted this on Facebook on Mother's Day, but I'll re-post it here.

My cute little family greeted me as I awoke this morning with hugs and cuddles. When I commented to Anthony that my eating habits prevent me from having the standard breakfast-in-bed of bacon, eggs and pancakes, my cute son immediately disappeared and returned with a breakfast in bed that I could eat - pistachios and a banana (and bread, which I had to pass on). Such a loving act from such a wonderful son!

By the way, noticing my awesome morning hair (it's usually far crazier), makes me remember to share this story. I keep touting that I have had no noticeable hair loss from chemo. A few weeks ago I told Anthony that the chemo had strangely turned my eyebrows blond. Then a few days ago I finally realized that they're not blond, they're non-existent! My eyebrows are so thin that they look blond and my eyelashes are so thin I haven't bothered wearing mascara for a couple of months. It just took me a while to realize that it was hair loss from the chemo. This makes me wonder how crazy my morning hair will be when my thick hair returns with all those short little new shoots coming in! I've read that regrowth can start 1-3 months after chemo ends. As for the short do, kid A wants me to grow it long again, but I like the convenience of short hair and Anthony likes the look, so I think it will stay.

Last news bit. I've been on hormone therapy for 2 weeks now. What is hormone therapy? It's called Tamoxifen and it's a small white pill I take once a day. My understanding is that it doesn't prevent my body from producing estrogen, but rather inhibits certain cells (like cancer) from absorbing estrogen, while allowing other cells (like the heart) to still get it. So far my biggest complaint is upset stomach and a surge of insomnia. I'm not sure if I've had mild hot-flashes yet, or if I'm just not loving the warm weather we're getting now. I'm also not sure if I'm feeling moodier, or if it's just due to some missed sleep. But I have definitely embraced this new therapy. As I continue to have some back/bone/muscle pains, it gives me comfort to know that I am doing something to combat the cancer and hopefully the pains are just soreness from my workouts.

Advice request: Anyone ever been treated for diastasis? What are the pros/cons/alternatives to surgery?

Healing Signs

I may be done with chemo, but I'm not done visiting the chemo clinic. For the next year or more I will continue to get a monthly dose of Zometa - a drug designed to stop bone loss. That's where I am this morning. Back at the clinic. On the drip.

It has now been about 8 months since my cancer diagnosis. Yesterday I was reviewing my back pain symptoms with my physical therapist and I realized that I have really come a long way! My PET scans may be inconclusive, but my symptom "scans" are looking very positive.

Previously (P) vs. Now (N):

• (P) My back pain kept me from being comfortable at the end of the day or when trying to sleep. I super heated a rice bag and wore that around the house during the day and couldn't sleep without it at night.
  (N) My back pain has been slowly improving. Now I can often get through the day without needing to apply heat and I have found myself forgetting my rice bag when I go to bed (though I often still use it because it helps my muscles relax and feels like good therapy).
• (P) My chiropractor performs a thermal analysis on each visit that electronically measures muscle strain on either side of the spine. If the analysis shows much deviation from a central alignment, he does an adjustment, otherwise he does not. I've been visiting him for about 2 years, needing an adjustment every 1-3 weeks.
  (N) I am going on 8 weeks of holding my alignment (with checks every 2 weeks) and previous to this went 4 weeks holding my alignment.
• (P) I have been told by multiple physical therapists and chiropractors that my left hip is higher than my right. I've attempted to correct this with shoe lifts to no avail.
  (N) After several weeks with my current physical therapist, my left hip is only marginally higher than my right and showing continual improvement.
• (P) For years and years when I have walked on my treadmill, I have always drifted to the right. In fact, it felt uncomfortable to walk with my feet spaced evenly from the center point.
  (N) I've recently noticed that I am walking evenly and without drifting.
• (P) 3 months ago I couldn't sit for more than 5 minutes without significant pain. I couldn't make it through dinner, or a movie or church without needing to lie down.
  (N) I can sit for a couple hours, though I still use a U-shaped cushion to help. Anthony and I have recently started going to movies again and just last week I made it through the entire church block without having to bail for a rest at home.

When I look at these results I just think, "How can I not be healing? Something is working right here!"

I'm still not where I was a year ago. My back pain has prevented me from running. Someday I'd like to run a 5K again. Someday I'd like to do a mini triathlon again like I did before I had kids. Someday I'd like to sit for an extended time again without any pain. We'll see. I'll do my best. And I'll hopefully remember how grateful I am to be here with my family and to have such a functional body as it is.

Scan Results

Cancer is not a game. But sometimes it feels like one.

As this recent scan approached I had several people express "excitement" to hear more victorious news. It seemed as though I was not a sickly cancer patient, but the star player in a rather intriguing soccer match. I like this mindset! I don't have to view each scan as a life-or-death pronouncement; just as the latest match between two rival teams.

In any given round Team Heidi might "win", showing decreased cancer activity, or Team Cancer might "win", showing increased activity. But win or lose, it's just one game out of hundreds to come over the years. Even with an elating win, I must continue to work hard and stay sharp. Or if faced with a frustrating (even scary) loss, I will dig deeper and rework the game plan.

After a 3 month duel, the scores for this latest round were tallied on Monday. And the winner was... ambiguous. Both teams have scored and the scores are controversial. We are tied.

To better explain this result I need to describe how PET scans work. The scan is based on tracing radioactive glucose which is injected into the patient an hour before performing the scan. During the hour between injection and scan the patient is required to sit quietly in a dimly lit room without doing anything - no reading, no iPhone, no music - just sit. Meanwhile, the radioactive glucose is being sucked up by the most hungry parts of the body. Fast growing or active cells need more energy and will greedily gobble up a larger portion. So the more glucose in a spot, the more active it is. Since cancer is fast growing, it will suck up a lot of glucose. But other parts of the body can suck up glucose too - like active muscles, a stimulated brain, or wound sites that are healing. That is why the patient is instructed not to do anything stimulating after the injection in order to avoid inaccurate numbers. In fact, the patient is told to not exercise the day before the test and they are asked to report any healing cuts or recent surgeries. Needless to say, PET scans are not perfect. They can give an amazing amount of information, but sometimes the meaning of that information can be... well, ambiguous.

In this round, Team Cancer appears to have scored a point because the scan showed activity in several new places in my bones. Team Heidi also appears to have scored a point because the scan showed that there is zero suspicious activity in any of the soft tissues of the body (no new organs affected), including the original tumor sites in the breast and armpit. According to my doctor, this scan indicates one of two things. Either Team Cancer has the advantage and is actually spreading, or Team Heidi has the advantage and the increased activity means the bones are actually healing. (Remember how the glucose can be sucked up by healing wounds?)

Based on the fact that the original tumor sites are now "dead" and that I have no pain in any of the new sites and that my overall bone pain is reducing, the doctor is inclined to believe that my body is healing and that we should move forward with our treatment plan. That means I am done with chemotherapy (YAY!) and I start hormone therapy today (it must be done, but I am dreading it). We will do another scan in 3 more months. In the meantime, I am going to assume that I am winning and continue to do the things that got me here: healthy eating, physical therapy, spiritual peace and positive attitude.

So if you've been a spectator on my little blog, eager to find out if and when Team Heidi would win... well, go grab yourself a bowl of un-buttered, un-salted, air-popped popcorn and a super-sized water and settle in; cause we're in overtime baby!

Cravings

Nearly 3 months without a smidge of dairy, red meat, yeast, or sugar (except in fruit and vinaigrette salad dressings and such). Lots of fruits and veggies. Lots of spinach and kale.

Well today I want....
An entire loaf of  soft yeasty homemade white bread.
A cheesy pepperoni pizza with stuffed crust and butter dipping sauce.
A ginormous Heath ice cream shake.Oatmeal, chocolate-chip pumpkin, m&m, and no-bake cookies.
Cafe Rio pork burrito made enchilada style.
Wendy's bacon deluxe burger, french fries and a frosty.
Barqs rootbeer and Sprite from a fountain.
Cocoa Pebbles.
Resses peanut butter cups, Twix and KitKat.
Fettucini Alfredo.
Molten lava cake a la mode.

Oh, and my life.

Has my health kick been worth it? At the very least I am free from stomach aches, indigestion, and food-related guilt. I also seem to recover from colds faster and with fewer symptoms. However, I'm not free from cravings (but they don't hit everyday), I haven't lost much weight (I was already pretty light on the scale) and I wish I could say I had more energy (although that's a tall order when I'm being pumped full of chemo every week).

But am I kicking cancer? Can I help my body reverse cancer? I don't know. Tomorrow I'll know a little more.

Dreams of the Deceased

Big day today. This may (maybe, might, possibly, fingers-crossed, but also maybe not) be my last chemo treatment. yay! Next week I will have my scan and I get the results of that the following Monday. So you all be sure to check in for the update. And please, please, please, keep those prayers coming!

Having last week's blog post on my brain has brought up several dreams of my mother these last two weeks. I have had many dreams of her since she passed away. I've had a couple special, perhaps even spiritual, dreams. But most of my dreams of her have been as random as most dream are - like two nights ago when I dreamed that she was giving me advice about my upcoming cancer treatment decisions. She sang her advice to me: "Scatter Sunshine, all along your wa-ay. Do what you have to do to live another da-ay!" Yeah, I woke up laughing from that one :o).

Yet despite my dreams having the typical dream weirdness, I've recently realized that there has been a prevailing theme to them and a profound lesson.

In a dream last week, I imagined that my mom  invited me to sit by her at some boring lecture. I didn't want to sit through that; I had something else more important or interesting to do. Then it suddenly occurred to me, "Wait! Mom! You're here!" And I was so happy to see her that I plopped right down next to her, delighted to get to hang out with her.

Back around Christmas time, I dreamed that my mom was at the kitchen table with reams of wrapping paper and ribbon and dozens of dollar-store gifts she had purchased. She asked me to help her wrap. I grumbled. I knew she was perfectly capable of wrapping the gifts herself and I wasn't in the mood to work on her project. Then I realized, "My mom is here! She's back! She's here!" And I immediately changed my attitude, picked up a pair of scissors, and was thrilled to share in her Christmas experience with her. (Later that week I actually went to the dollar store and bought several small pre-Christmas gifts to share with my children and siblings as a reminder of grandma/mom).

I've had a dozen similar dreams over the past seven months. Dreams where I'm doing something with my mom and taking the moment for granted. Then it dawns on me that she has died and returned to visit for a brief window. My attitude changes and for the remainder of the dream I'm glued to her side soaking in the experience. When I wake up I'm thrilled that I've had a chance to hang out with my mom again, even if just in a dream.

Only this past week, as I thought of the recurring theme of these dreams, did an valuable insight emerge.

How much would I love to see my beloved mother again? How happy would I be to be in her presence again? I would drop whatever I was doing and delight just to be around her in whatever activity she wanted to do. And how would I feel if this were anyone else that I loved? What if my spouse or a child or a dear friend had died, wouldn't I delight to be back in their presence again too?

But most of those dear ones are not dead. They are here. Do I fully appreciate that? First thing in the morning, do I greet my family with a hug and a smile and tell them how much I missed them all night? Do I hug them and focus on them for a bit when they return home from school or work? Do I drop whatever I'm doing for 5 or 10 minutes to be with them in the moment that they want my company? Am I willing to engage in their activity just for the chance to be around them? I would eagerly rejoice in their presence if they returned from the deceased. So why not express similar JOY in them right now.

This was the legacy of my mother. She delighted in her loved ones. She did it with her smiles, her happiness to join you in your activities and her way of welcoming you to be around as much as you wanted. I have not been as good at that as I'd like to be, often letting my to-do list rule my time. But these dreams have pressed upon me the desire to capture that welcoming love with those who are here. Now.

My Mom - My Hero

Picture taken Feb 2012

My Mom.

14 Year Cancer Fighter.

Mother of 3. Grandmother of 6. Devoted wife.

Reader, sewer, traveler, family historian, doting grandmother.

Loved Disney, bargains, 3am mahjong and cheetos.

Exemplified selfless service in church callings, community work and beloved friendships.

Passed away on September 1, 2012 from metastasized breast cancer to the liver.

My Hero.

My mom taught me many things and though she is no longer here, I am still learning from my memories of her example. She showed me how to reach out and love other people - how to make them feel welcome and wanted with exuberant enthusiasm. I loved that about her and I loved feeling that from her. She showed me how to face cancer by embracing time as an opportunity to make memories and not wasting it in self pity or doubts. She showed me how to face the inevitability of death by putting her life in the Lord's hands and trusting His timing. She showed me how to face the final experience of death, with a little humor and a lot of love - surrounded by family in a loving, sacred atmosphere that was uplifting even as it was sorrowful.

My Mother's Masterpiece

My mother's greatest masterpiece was this amazing family she and my dad created. We had relatively little contention in our home growing up. As adults we sincerely love and support each other and enjoy being together. We are kind in the things we say to each other and about each other because we honestly view each other with high regard. I am so grateful that I am a part of this family, a family I want to be with forever.

Picture taken Nov 2011

Another of my mom's masterpieces was a talk she gave in May 2010 at the BYU Women's Conference. In this talk she shared precious life lessons learned through her many years of fighting cancer. At her funeral, our family gave out a few hundred copies of her talk and have heard it referenced many times and in many settings this past year. People have resonated with her personal and poignant feelings of struggling with a terminal illness and of finding JOY in life. 

I didn't appreciate or understand much of what she said at the time, but this talk has become an anchor to me  in my cancer struggle. This is the kind of thing I hope to leave behind for my children someday. Though she is not here to give me her hugs and her company, these thoughtful and personal words have helped me through this trial and reaffirmed my faith. Here are few quotes that have been especially meaningful to me this year:

"Each of us must rely on the Spirit to tell us and guide us, to do what is fitting and right for us. Not just settle for what is good, according to other people's expectations, but do what is best for us according to our best discernment of the Spirit."

"To gain strength we need to come to know and develop a personal relationship with our Savior. We all have been told this a million times - when will it sink in? When will we make it a priority in our lives? I hope and pray it will be today."

"Cancer treatments were started and [I] felt terribly, horribly awful - physically, emotionally, and spiritually. [I] was an advocate of natural medicine, so to rely on Western Medicine was like a betrayal. Using poisons, as [I] thought of them, for healing was a contradiction. But humility, contemplation and prayer helped [me] decide that [I] would use the best from both systems and rely on the Lord...

"Over the years it has gone from the breast to the liver to the lymph system. All have been hard and scary, but I am here to witness that all things are in the Lord's hands and Life does go on, till He calls us home. The Lord loves us - and his love is Radiant and when we take it in, it fills our souls with acceptance and peace. I have also learned so much and have been blessed in many ways."

"Life is not easy. This journey of life is full of peaks and valleys and lot of slams-in-the-face: all of us have our own to deal with and endure. But Life is a huge blessing, one we probably will never fully comprehend. But while it entails struggles, suffering and pain for us and our loved ones, its blessings are worth treasuring for as long as life is given to us. I determined that I would not let negativity, doubt or self-pity rob me of enjoying and making wonderful memories of whatever time was left to me."

"I know from experience that it helps immensely to have a good family, good friends and a ward to love us and keep us going on the straight path in times of struggle."

"Good books helped me to escape and regroup and take my mind to other places for a while."

"I also found that laughter was wonderful and uplifting. There is nothing like having tears run down your cheeks with belly deep laughter."

"My favorite scripture is Mosiah 4:9, 'Believe in God; believe that he is and that he created all things, both in heaven and in earth; believe that he has all wisdom and all power, both in heaven and in earth; believe that man doth not comprehend all the things which the Lord can.' I truly believe this with all my heart and I believe from experience that all things are in God's hands and we all will come to a point where we must put our trust and love in Him if we are to successfully finish our journey here on earth."

You can read my mom's full talk at: Linda's Women's Conference Talk