Drum Circle

Here I am, back at CTCA for a quick over-night visit to get my lupron booster (and a massage, of course). Sister-in-law Amber came to visit me at the cancer center tonight and we were invited to join a "healing drum circle". 8 of us sat around a fire ring and drummed the hour away, along with Native American traditions and stories. "Vibration", our facilitator said, "is in everything. Vibration is how we hear, how we see, how we see different colors. The vibration of the mother's heart is a baby's first lessons in love." Tonight, we used vibration for healing. As we grounded ourselves to mother earth, we were reminded that through the earth we are at all times connected to our loved ones, were ever they are and we are connected to that sphere that gives us life. Later we spent a moment visualizing our "intent" (our current desires) as a sphere of light, that expanded to fill the whole universe and that we then welcomed into our hearts. It was an uplifting and delightful hour. I continually love to discover the connectedness we humans have to each other and the universal feelings we have to seek after love and peace and healing. I love discovering new ways to create those connections to others and to embrace those experiences of light.

CTCA by facebook

Tuesday 3:00am

3 nights of insomnia in a row! Exhausting. I need a vacation.

Thursday 12:30pm

Lunch at the cancer center, including beet salad and non-creamer cauliflower soup. So tasty. So healthy. And so not prepared by me. Mmmm.

Thursday 7:00pm

The cancer center has a putting green, horseshoes, shuffle board and lounge chairs. Not to mention the $2 organic meals. Oh and the massage I got today. And it's mostly paid by insurance! I'm feeling way too good to be a cancer patient.

Thursday 9:30pm

Check out all the wires I got to sleep with. And this is before the tubes under my nose. Amazing anyone sleeps at all in these studies!

Friday 8:00am

I had a good "typical" sleep last night - no insomnia, but lots of wake ups - so hopefully useful.

In other words, my brief stay over in AZ was actually relaxing and fun! The sleep study turned up that I have restless leg syndrome (or something like it) and that an iron supplement might do the trick. Fingers crossed that makes a difference! Next visit to AZ in 6 weeks.

CTCA

Being fed up with these ambiguous cancer results, I decided to seek out a second opinion. I called Cancer Treatment Centers of America and a week later found myself standing on the doorstep of their facility in Phoenix Arizona. I had multiple phone contact with them before arriving and was able to request visits with several different types of doctors. That's the set up there. Their goal is to treat the whole person and do it all in one place and with communication and sharing between all the doctors. It is an exciting concept for the medical industry and, I think, a forerunner for how most medical practices will run in the future.

Anthony and I arrived together for this week long experience. We both had this weird sense of excitement about it. We walked in to an inviting lobby area that looked like a hotel, rather than a hospital. Off to the right was a cafeteria that served organic food grown in their own extensive garden, and a juice bar that served everything from Starbucks coffee to Super Green shakes. The main hallway was wide and carpeted, the walls were painted with warm desert hues, couches and plants decked the center aisle. All the employees greeted us cheerfully. Anthony's immediate assessment was, "This is like Disneyland for cancer people!" Although I was also impressed, I had to reign him in a little and remind him, "Yeah, but we still have cancer."

From Monday through Thursday I had a busy schedule. Let's see, I met with... intake doctors and nurses, a naturalpath doctor, a nutritionist, a radiation oncologist, a surgeon, a medical oncologist, a mind-body therapist, a chaplain, a gynecologist, a gastroenterologist and had a brain MRI done. I unfortunately missed out on the massage therapist, the chiropractor and the sleep clinic, but hope to catch those in the future.

For the most part, the doctors all work in an area called The Clinic which looks like a standard doctor's office except that the labyrinth of rooms is fairly extensive. Most of the appointments were back to back, so I chilled in the same room all day and the doctors came to me!

In regards to the cancer, first off, no brain tumors. Yay! I've been getting such bad news from these stupid scans I was quite nervous about getting the results of that brain MRI. As I nervously waited in the room for a doctor to arrive with the results, I couldn't help imagining my mom waiting in the room with us. I commented to Anthony that I felt like we should bust out the skip-bo cards to pass the time, since that's how she passed the time with us years ago while I was in labor with my second baby. I also thought about when my mom was pregnant with me she craved cottage cheese and I have often quipped that my brain was formed from the stuff. That day I joked that there was no way they were going to find a brain tumor because nothing can penetrate cottage cheese!

After meeting with the cancer doctors, they assessed that I don't need radiation since my pain is rather minimal. I also don't need surgery at this time. But they felt pretty confident that my cancer is not responding to treatment. The oncologist said that the bones are the most difficult organ to assess cancer in, but there was enough evidence to indicate that the Tamoxifen wasn't doing the job. In fact, he said that he probably would have started with aromatase inhibitors from the beginning, not even doing any chemo. I don't know if chemo was the right way to go or not, but I did like the confidence he had that aromatase inhibitors would beat this thing. The new treatment plan is to put me in to menopause using lupron shots every 3 months and then to take daily anastrozole to suppress any stray estrogen and progesterone. This is actually the same plan my original doctor wanted to change to, which further adds to my confidence that it's the right plan.

As for menopause, who knew I'd beat all my friends to it by 15 years? I need to get some more 50 year old friends who can give me advice on this new milestone.

Overall our experience at CTCA was positive. We liked most of the employees we worked with and felt like the oncologist was incredibly knowledgeable and confident. I loved having easy access to all those other disciplines too. I felt like I got excellent care from truly caring people. Plus that cafeteria food was delicious!  However, it didn't meet all my dreams. I was hoping for a more warm-fuzzy oncologist and a different approach from the mind-body therapist. I was also turned off by one nurse who tried to educate me on how to cope with menopause and ended up just discouraging me that I was going to get fat, loose my libido, suffer unendingly from hot flashes, oh, and probably die within 5 years (hate is probably too strong of a word, so let's just say that I severely disliked that lady).

All that said, will we continue there? That's the current plan.

One of my favorite take away moments from the experience came in meeting with one of the chaplains that works there. We talked religion and cancer. We had a nice hour-long talk, but it ended up being one sentence right in the middle that hit me with personal inspiration.

I talked with her about my struggle to try to accept death and to be ok with it. I explained to her how my mom found great peace in allowing the timing of her death to be in the Lord's hands, but that try as I might I just can't get there. I don't want to die, but I feel like there is a lot of pressure on me to accept the inevitable. She responded emphatically that I have TIME. I am young, I have young children, and of course I don't want to die. She told me about one patient/friend of hers that had breast cancer with mets to her bones, liver and brain. 4 years later this lady is rarely in the center, is living a full life and is raising her teenage sons. I love that story.

Note: If you want to give cancer patients hope, don't tell them about someone who died, even if they survived 10 years, because it inevitably puts a time limit on their life-span. Instead, tell about someone who is still living and still fighting, even if it's only been 4 years so far, because then the ending remains unwritten for all of us. The only exception would be if it was someone very close to you in which case you should emphasize the emotional understanding and not the time-span. Besides, stats are garbage. My mother doubled her supposed life-expectancy. If I inherited her cancer genes, surely I inherited her math genes too!

After hearing the chaplain's exclamation, I still can't help recognizing that technically my life-span stats are not super long, but I also recognize that what she was saying was true. I still have time. The Lord isn't expecting me to be able to trust his timing overnight. It's challenging. He's ok with me needing some time to get there. In fact, I even felt spiritually encouraged to take the pressure off myself to hurry on that point. My mom didn't find her peace until several years (maybe 8?) into her cancer fight and even then it came and went a bit. It is important for me to relax my panic-grip on the life/death question, and it is important for me to continue to seek my God and allow his messages for me to flow into my life as they come. I may be struggling to trust his timing on my death, but I do trust his ability to teach me (this experience case in point). Self, take a deep breath. I will get there when I get there.

Scan Results

For anyone anxious to hear the results... here goes. You can probably tell by the delay in writing that it is not awesome. Things are still inconclusive. Everything is still very active. This could still either mean that my bones are in a healing mode, or that the cancer is spreading. Uncertain. The only certain thing (knock on wood) is that the cancer has not spread to any other organs (phew!). My doctor wants to be practical and treat this is as if the cancer is spreading. This is very frustrating. I am feeling so much better than I did 10 months ago. I feel like I'm healing! But the exams don't necessarily confirm that, my back pain is still ongoing and cancer is so elusive that you can't feel it spreading. I am continuing to hold to my faith that healing is coming for me, even if it means more chemo or radiation to get there.

I guess we're heading in to double overtime here. The teams are getting pretty exhausted. It is daunting, but I am still holding (with lots of ups and downs). I am learning a lot (lot lot lot) about coping with fear, anxiety, sorrow and dark times and feelings. I will definitely have to share those concepts in another blog post. But I still ask for prayers and thoughts sent my way - because knowing that I have a cheering section is one of my most valuable coping mechanisms.

"Man! Cancer, huh?"

My big scan result is tomorrow. This past week, waiting for my doctor's report, I have been crazy emotional. I've pretty much cried everyday, sometimes for hours. For a non-crier, that's pretty bad. The weight of cancer has definitely gripped me during this last round. I think it's because I haven't shown definitive improvement yet, and I feel like if I don't show improvement by this point then I'm facing another round of even harsher chemo and my life expectancy is much shorter. And the thing is, even the "good" news isn't really "good". Yes, I like to fantasize that the doctor will tell me that every droplet of cancer is gone, but in reality that just doesn't happen. Even if it appears gone, you still have to be tested every 6 months to see if it's flared up again. So even the best news would be, "Things are looking good enough to wait 3 to 6 more months before we put you through this torture again."

I have been shocked and even appalled at how heavy and painful the fear and sadness is. It's ironic that almost one year ago I spoke at my mom's funeral and said something like, "For those of you who have had to face talking to a doctor about a terminal illness, you know how paralyzing that can be." I had no idea then that I was talking to my future self! And I can't believe how very very little I understood of my mom's experience while she was going through it. I mean, this is absolutely awful. I know she told me that, and I tried to understand by relating it to pregnancy - the hardest experience I'd yet been through. But actually wrestling with the end of your life and trying to be ok with that?!? So hard! And she endured under that for 14 years. I now understand my mom in ways I didn't fathom a year ago and she's not even around to relate to.

I have thought, of course, about our eventual reunion in heaven and what we will say. After hugging and rejoicing, very few words will need to be exchanged.

I'll pull back from our hug and look at her and say, "Man! Cancer, huh?"

She'll nod and say, "I know, right?!"

Then we'll both laugh until tears roll down our cheeks.

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

Update: 1 Month To Go?

As April rolls in, I'm rounding the corner on what may be my final month of chemo. I am scheduled for 3 more treatments and then I do another PET scan. Fingers crossed, hopefully that scan will show that my cancer has reduced even more since my scan in January. That scan will help the doctor determine if I should continue on chemo a bit longer or switch over to hormone therapy.

We are not expecting the scan to show that the cancer has been eliminated, just reduced. Even without eliminating the cancer with chemo, hormone therapy may continue to reduce cancer activity or at least hold it in stasis. Hormone therapy means taking an estrogen-blocking medication since my particular cancer feeds on estrogen. Then for the next several years I would continue to have regular PET scans (not sure of the interval) to monitor if the cancer has started to grow again and if I should do more chemotherapy.

At this point I'm feeling very positive about my prospects. Even without doing a scan, I've had some feedback on my cancer through the observable tumors in the breast and armpit. This past month the tumor in the breast has entirely disappeared as far as I or my doctor can tell! The tumor in the armpit is more stubborn, but does seem to be shrinking a bit. If that sucker disappears in this final month of chemo I will be thrilled. (On a related note, my bulging disk back pain has improved. Last month it was so bad I felt almost bedridden and couldn't sit for more than 10 minutes. After a month of specific core-strengthening physical therapy I feel back to my "normal" with the pain being significant only about 1 day a week and the last hour in the evenings.)

Even with disappearing tumors and really good scan results, it will be a long time before I feel like I am "out of the water," if ever. Cancer has a way of resurging. Thankfully it can be attacked with chemotherapy multiple times and I've shown good response to such treatment. I'm also attacking my cancer nutritionally by switching over to a low-sugar plant-based diet and I've heard some encouraging stories with that approach (stage 4 cancer patients still going strong after 20 years). My hope is that once the chemo has beaten back these big tumors, the combination of hormone therapy and better nutrition will keep me in remission for a long long time.

Water, Diversions, and Kid A's Assessment

I've had 3 topics on my mind this week and I can't pick which one to write about. So I guess I'll share all 3.

Water

I believe in drinking water. Lots and lots of water.

I'll give you one example why. When my cancer was diagnosed, I underwent 3 different scans to try to determine the spread of the cancer. Each of those scans required an IV injection. I dislike IVs. I swear I always get 2-3 pokes to get the IV in and it hurts and the injections hurt going in. Yuck :(.

Two months ago I had a couple more run-ins with IVs for my follow-up scans and things were different. (If you're wondering, I don't get arm IVs for my chemo. That IV goes through a Port that was surgically inserted 2 inches below my collar bone.) For the first time ever the nurses claimed to see "4 good veins" instead of just 2, the IVs went in right the very first time and they barely hurt at all. I was shocked. I asked the nurses what made the difference. The answer: HYDRATION!

Before I started chemotherapy I drank 5-6 cups of water daily (not too bad, I thought). Then I attended a pre-chemo prep class where the nurse gave several tips and tricks for dealing with chemotherapy. One of her suggestions was to drink 10 glasses of water everyday. Everyday since I have consumed 9-10 (or more) cups daily. This is hugely important to flush the chemo toxins out of the system, to ease the burden on the kidneys and liver and to maintain good bowel function. But it was when I got those IVs that, well sir, I became a believer.

To get all my water in, I follow a simple trick. I try to drink 2 cups (16oz) with every meal and snack. I snack between each meal so for me the schedule ends up being: 7am, 10am, 12pm, 3pm, 6pm, 8pm.

Even if you are not an awesome water drinker, if you are faced with a medical procedure - especially a surgery - be sure to HYDRATE! Start a couple days before, continue in the hospital, continue at home for as long as you can. Your blood (and many organs) will thank you.


Diversions

On the balcony of Studio C with R, grandma, S and David.

I had a unique and fun opportunity on Friday. My old boss, David (pictured above), invited me and Anthony to speak to a small group of BYU students about our college and professional careers. David and his students work at the BYU Broadcasting building so after the meeting he took us on a tour of the facility.

At the BYU CougarEat.

This particular Friday I woke up feeling very agitated. The chemo was getting me down physically and mentally and I was feeling frustrated with my limitations. For a while I considered cancelling the outing and wallowing in my misery all day. But I hate to back out of a commitment, so on we went. And it turned out so happy. I was delighted to see my old boss again. I enjoyed sharing my thoughts with the students. I thrilled to get a behind-the-scenes tour of this cool building. I relished the opportunity to share a memorable experience with my grandparents and children. In fact, this was the first time I've ever taken S to BYU and it just filled my heart with joy to realize that I got to do that at least once with all of my kids (hopefully many more to come)! My Friday went from being miserable and hard to being overwhelmingly happy; and that feeling carried with me for the rest of this week (my weeks reset on Wednesdays :o).

Sometimes the best way to fight the blahs is to enjoy a good DIVERSION! Be with people. Get out of your head. Do something to put a smile on your face.

Just to share, here's a bit of my talk. My parental advice to my college-age children:

1. Know your core values and allow your goals to adjust around those.
2. Pray about every big decision and learn how to get spiritual guidance.
3. Have a high work ethic - in school or on the job - learn how to work and how to stick to it. This is what employers value.
4. Get outside your comfort zone - challenge yourself - even if all you can do is “show up” and see what comes of it.
5. Be flexible - allow for serendipity and spiritual guidance - you can’t see the whole picture the day you start college so you adjust as you go.
6. Be happy - don’t take on so much stress that you fail to enjoy the friendships and the dating and the memories - it is such a unique and wonderful time - go live it.
7. Learn how to communicate - speaking and writing skills will set you apart.
8. Learn about life from those around you - some of my favorite times in the world were non-work-related conversations with my professors and bosses.
9. Go for your skills and interests. If you know you are great at X, then do it! You’ll like it more.

Kid A's Assessment

Yesterday afternoon, Kid A crawled in bed with me for a bit while I was napping. As he combed my hair with his fingers he looked me in the eyes and said to me:

A: Mommy, your cancer is still a little bit bad, but it's mostly better.

Me: (Smiling at such good news - hey, children have insights we adults don't often get) Why is that, do you think?

A: Because you have good medicine.

Me: Any other reasons?

A: And because you have good blessings.

Me: Anything else?

A: (Hugging me) And also everyone in this house cares about you a lot.

Do you love this boy as much as I do?! Oh my dear children. You give me such motivation to fight this challenging disease!

Benefits of Cancer... (Say WHAT!?)

You heard me right. Cancer has it's benefits. At least it has for me. And it's high time I share the reasons why I can say that.

First, let's review the bad things that cancer has brought into my life:

1. Fatigue.
   And plenty of it. Of course, I've been feeling tired since I got pregnant with my first child, so it's hard to know how much of that is just motherhood...
2. Bone/Muscle pain.
   Some days it feels bad, but then again I can usually remedy it with heat and ice packs so that's good. Many of those pains have been there for the past year - either from the bulging disks or the cancer, I don't know.
3. Fear of worse pain.
4. Fear of death.

4 things. And 2 of those are only fears of something that does not currently exist.

Now, here are the things that one would expect to experience while being treated with chemotherapy that I have not had to deal with:

1. Hair loss
2. Nausea
3. Mouth Sores
4. Dry skin
5. Indigestion/Heart burn
6. Bowel issues
7. Nerve damage
8. Anemia
9. Shortness of breath
10. Catching germs easily

Lucky - I know! If I could bottle and sell whatever it is that's doing this I'm sure I'd be rich. Believe me, I am so so so grateful.

But that's not all. Now let me share with you all the good things that have happened to me in the past 6 months:

1. Deepening relationships with family and friends.
   This is partly due to the sympathy and interest my condition has aroused and partly due to the wake-up call that cancer has given me to cherish the people in my life. This item ought to count for about 10 items because of the importance and impact it's had on me.
2. Free babysitting every Wednesday!
   Ok, so I'm sitting in a chair drugged over instead of being at the beach. But I get to be with my hubby and that is always precious time.
3. Improved social skills for my children.
   They love getting to go to new places and play with new toys and new friends. They actually look forward to their outings and eagerly ask on Wednesday mornings, "Where do we get to go today?" 6 months ago, little S was super-extremely stranger shy. These days she has no qualms about me leaving her in a babysitters care and has also grown very fond of some frequent caregivers. 6 months ago, I was still hesitant to send A to someone's house for a playdate because of his tendency to have emotional and aggressive outbursts with other kids. These days I don't worry about it - A still has emotional outbursts and frustrations, but he has had lots of opportunities lately to practice and learn the self-control necessary to not be excessively aggressive.
4. "New eyes" to see my family with.
   Too often I have thought, "I will play with my kids when my house is clean." or "Next year when my kid grows out of this behavior then I'll really enjoy them." Well guess what? Next year may never come. I am working hard on changing my thought process to really enjoy my children right now, as they are and it is a beautiful thing as I get closer and closer to that.
5. A deeper relationship with my husband.
   We've been forced to have some pretty heavy discussions about everything from wills to remarriage after death to testimony. We've come to know and value each other more than ever.
6. Motivation to free myself from emotional burdens.
   And for this one I have to thank my AMAZING husband who has surprised me with his compassion, openness and patience. I had no idea I married such a skilled and willing therapist. Every wife should be so lucky. Seriously.
7. An answer to the question - "Should I have more kids?"
   Anthony was done. I was spent. But I wanted to do what the Lord wanted me to do on this one and I was going back and forth on this thought, wishing God would just hit me over the head with a 2x4. Well he did. Our family is complete with 3. And speaking of baby #3, thanks to some heavenly inspiration, I really really think we snuck that baby in just under the wire. I can't imagine my life without her. However long that life may be, it is all the more joyous because I have THREE beautiful children.
8. Opportunities to learn BIG life lessons from others.
   My cancer has provided an opening to talk about some interesting/deep/personal things with others. I have been amazed at the trials others have gone through that I had no idea about. I have been moved by their tenacity and cheerfulness. I have appreciated their wisdom and insights and expressions of faith.
9. Help. Help. And more help.
   It takes a village to raise a child. And it takes a village to keep a family in tact. Beyond the Wednesday babysitting, we've had other friends and young women in our neighborhood volunteer to watch kids so I can have a few hours to myself to rest or relax. I've been signed up for a maid service that offers 10 free visits to a newly diagnosed cancer patient so that I don't even have to squeeze in extra time to clean my bathrooms or kitchen. And my dad has especially stepped in big time to fill the role of both mother and father by coming down twice a week from noon to bedtime to make sure I get to nap, do physical therapy, go to doctor appointments, go grocery shopping, or whatever else, plus he usually does my dishes and my laundry while he's here!
10. Motivation to eat right.
    It's been... 6 months since I had a hamburger, 6 weeks since I had any refined sugar (aka sweets), and 12 days since my last bite of cheese. I am a crazy veggie eating machine these days. I'm still learning the ropes of this new healthy life-style, but I'm actually loving this new food adventure!
11. Motivation/opportunities to learn about relaxation and meditation.
    Still learning lots here, but again, I'm loving the adventure of learning these things.
12. A burst of faith.
    It's as if I was sitting in a room as the sun slowly sank, hardly noticing the dimming. Then cancer waltzed in and threw the light switch. Wow. I can see again! I am particularly grateful for this one.
13. A deeper relationship with my mother.
    This one is older. This one came because of her cancer. Still, I have cancer to thank.
14. A deeper relationship with God.

Kind of wonderful, isn't it? To be honest, I feel a lot like this story from the Book of Mormon. I know I have the faith and prayers and well wishes of a lot of wonderful friends and family to thank for these blessings. I have a wonderful Father in Heaven, who has given me an experience tailored perfectly to my learning. I can't think of any other near-death experience I could have such an "easy" time with and also take so seriously, than to be hit with the exact thing I just barely watched my mom pass away from.

Yes, fear is always lurking in the shadows. Sometimes it jumps out at me unexpectedly and knocks me to my knees. Like when someone tells me a story about someone they knew who died of cancer after a year. Or when I watch parents with older kids and wonder if I'll get to share those experiences and milestones with my children. It can hurt. It can be temporarily debilitating. Yet coupled with that fear is the opportunity to stay on my knees and find a way to cope with the fear. Opposite of the fear are some very tangible joys that I would not have understood otherwise.

I don't know what the next page in my cancer story will bring, but when I look at all I've been given, I find hope to keep on reading.



PS. I wrote this entry on Tuesday night after an especially good day. It very accurately represents how I feel on many days. But I'm glad I wrote it on Tuesday because today (Wednesday) I got my chemo treatment. Chemo puts me into a funk. On most (but not all) chemo days I tend to feel agitated, cranky, tired and also restless. I try to keep a low profile so I won't be ornery with my family while I ride out the worst of the chemical effects on my body, which can take 1-3 days. Just thought I'd throw that in there lest I made cancer and chemo seem too much like a walk in the park.

Snapshots of Chemo Life

A girl in my ward is working on a college project related to chemotherapy. She asked me for some pictures that show the challenges of life on chemo. I thought it was an interesting way to tell the chemo story. Keep in mind this is only the challenging half of the story, there are definitely blessings too.

When I get my IV chemo Anthony takes the day off of work to come sit with me. Not every husband can do that. He makes up the time by working late into the night some nights.

 I collapse on the floor from fatigue quite often. My adorable children love me no matter how much energy I have

The housework gets very backed up since my free time is spent napping, or caring for the kids.

A's homework is often only half done or not done because I've chosen to let that stress slide.

Danke

Just a quick word of thanks to those who have commented or sent me an email about my blog. Your encouragement compels me to continue writing and I find that I really do enjoy pondering about and sharing my experience. Plus it gives me such a boost to know that I am cared about. So thank you.

Bulging Disks Update

After that last post I spoke with 5 different people who have experienced bulging disks. All of them said that the number one thing that helped them was getting a good set of stretches and exercises from a physical therapist. Heat and ice help. Steroid shots are an option. So I saw a physical therapist and I'm already feeling better.

Interestingly, the 2 bulging disks are located near, but not exactly on, the two cancer spots in my spine. Did one of these conditions create a weakness for the other? Does part of the key to healing my cancer lie in doing the things that will heal and strengthen my back for the disk problem? And which condition is the actual cause of the back pain I've been feeling for the past year?

In a way it's kind of nice to have something to blame for the pain other than the cancer. I think it makes me less tense. Previously, when my pain flared up I worried that the cancer was flaring up. Now I can attribute it to the bulging disks and tackle it with greater calm.

Bulging Disks

This was my no chemo week. Yay! I was extra wiped out from having a stomach bug go through our family this weekend so I am glad for a little breather to regroup my energy.

Actually, this week I've been more focused on my back pain than on my cancer. I've had back pain for the past year and a half. I first attributed it to normal post-baby recovery. Then I attributed it to this darn cancer. But the MRI last week showed two bulging disks in my back that are not located at the cancer sites, but one of which is located at the spot of most of my pain. So now I'm on a mission to learn how to care for bulging disks. Anyone out there dealt with bulging disks? What remedies have or have not worked for you?

Scare

"My life is not in my hands." That is the lesson of the week.

Two weeks ago I got awesome news from my PET scan that showed I was making progress in my cancer fight! I shouted the great news to the world across the pages of Blogger and Facebook and received many wonderful well wishes and congratulations. I felt a little boost of energy and a little less burdened by fear.

But I just had to go and get a copy of the scan for my personal records and I just had to read it for myself over the weekend. That's when I noticed the line that described a "new, subtle indication of leptomeningeal... blah blah blah." I looked it up. It's bad. It basically means that the cancer could be spreading to the spinal cord at which point its a very short time until "lights out." Of course I panicked and cried and despaired that my last few days were here.

As I cried to Anthony about that possibility I realized two things. First, everyone was going to be ok. My children and my husband would especially miss me, but I would leave behind healthy and happy relationships. They would have no reason to regret any unresolved issues, no reason to doubt how much I love them. And I know they love me. And even though I haven't yet had time to write my personal history the way I want to, I would also leave behind lots of blog entries of my family, blog entries of some of my best life lessons on this blog, my private spiritual journal and lots of pictures and videos. There's more recorded than my kids will probably even care to go through. I also have a will and life insurance so my family is financially taken care of. If I were to die today, it would be ok.

The second thing I realized is that I have no control over the timing of my death. Cancer is cancer. It can turn on a dime. Here I've been telling myself, "I'm so going to beat this. I'm going to eat healthier and learn to relax and breathe deeper and take my medicine and I'm going to make my cancer go away!" But there is no guarantee of that.

We often consider the unpredictability of death when we say things like, "You never know, I could get in a car accident on the way home." In fact, as I sit here getting my chemo, I just overheard a conversation where someone said those very words. Although we may say the words, the full emotion of death or illness doesn't truly register until you experience it. The closer it hits to home and the longer you have to cope with it the more you feel it.

My dad once told me that when my mom was learning to cope with her cancer she found great comfort in coming to accept that her life was in God's hands and the timing of her death was up to Him. She found that knowledge liberating. Although I accepted my dad's words, I didn't fully internalize them.

So far I've really been putting my fear into the future and my faith in myself. I have thought that by making some lifestyle changes I was going to buy myself more time, maybe a long time. But last week I experienced the reality that it is not up to me. I do not control the timing of my death. Whether it be a sudden spread of cancer, a heart attack or a car accident, death comes when it comes. If it is time for me to return to God, then I can't stop it.

Before I leave you hanging for too long, I should tell you that I do not have leptoblahblah. When we finally met with the doctor again she said that I don't have the symptoms of it and that that interpretation may have been an overly cautious radiologist. Yesterday I had an MRI to follow up on this and the MRI also did not indicate leptoblahblah. Phew. Crisis averted.

Maybe.

But cancer is cancer and life is fragile. There will be more scares. Death will ultimately come. We had a handful of very big scares with my mom's cancer, but we got through them and she went on to live her life with enthusiasm until the very end. Although I'm probably several scares away from internalizing this lesson as deeply as my mom did, it is liberating to realize that my life is not in my hands. When I feel like it is in my control then I feel frenzied wondering how to solve this cancer problem and fretting over every ache and pain. I worry that I might run out of time before finishing x, y and z. But when I feel like my life is in God's hands then I feel assured that I will not be short changed. If it's important for me to finish x, y and z then God will make sure I have enough time to finish them. Recognizing my life is not in my control does not greatly alter what I do on a daily basis, but it does replace panic with peace, which makes my days more joyful.

Perhaps the best way to convey my feelings on this topic is to recount a conversation I had with A on Sunday. We were at church when A crawled into my lap, twisted my short locks of hair in his 6-year-old fingers and whispered:

A: Mommy, sometimes I'm afraid you are going to die.

Me: Why do you think that sweetie?

A: Because grandma had cancer and she died.

Me: And that makes you feel scared?

A: Yes.

Me (with a big hug): Sometimes I get scared I'm going to die too. But can I tell you what I do about it?

A nodded.

Me: Well, first, I want you to know that I am doing everything I know how to do to live as long as I can. I am eating really healthy things and exercising as much as my body will let me and I'm going to bed on time and I'm taking my medicine.
     And you know what else? We are praying every night for me to get better and lots of other people are praying for our family too. I believe that if I do everything I can do and if I pray and ask Heavenly Father for help, he is going to make up the difference to make sure I live as long as I need to. And like I've told you before, I have a feeling I'm going to be here for a long time still.
     Do you know what you can do?

A: What?

Me: Whenever you see me eat healthy or do my exercises you can tell me, "Good job mom!" And you can pray for me as much as you want. But even though I do all that sometimes I still get scared. So you know what I do then?

A: What?

Me: I talk to Heavenly Father about how I feel and also ask Him to help me feel better. Sometimes I find another person to talk to too. And then I go and get a big hug from daddy or from my kids and I hug and hug and hug them until I feel better. And you are welcome to talk to me and ask me for as many hugs as you want until the scared feelings go away. And then we can play fun games or do other fun things and leave the scared feelings behind for a while. Does that sound good to you?

A: Yeah. (Big long hug. And then...)

A: Hey mommy, can I show you something funny I saw in my Lego magazine?

Me: Sure!

1:00 am

Oh Wednesday nights, how I love thee. It's 1:00 am and I am wide awake. Oh well. My sweet dad makes sure I get good nap time on Thursdays so it tends to work out.

And did I mention that Anthony's sweet dad flew out last week for 6 days just to help with the kids and to make sure I got my daily naps? I'm well taken care of! We had some fun while he was out here too...

Bumper Cars at Hollywood Connection!

No Candy for Valentines Day

I've given up sugar for the next year. The minute I found out I had cancer I gave up sugar and artificial sweeteners. That was in October. I survived Halloween without a single Twix. I allowed myself some pie for Thanksgiving, some chocolate covered nuts for Christmas and New Years and a week of light daily indulgence when we went to Disneyland last week.

Now I'm ready to go gangbusters. I decided at Disneyland that I wouldn't have any sugar for 1 year - until my next Disneyland trip - with no breaks for the holidays. That means no candy, ice cream, chocolate, syrup, jam or soda pop. And somewhere in there I also hope to figure out how to balance other sugar sources like fruits and breads to their proper amounts. Aspartame also has a pretty bad rap in cancer nutrition so my Crystal Light and diet sodas and gum are out too. I have recently learned about Stevia, which is in my chocolate flavored Isagenix protein shake every morning. Sometimes I make one with peanut butter and extra ice and eat it at night like ice cream.

I've had a few friends do this in the past and I have been way impressed at the same time that I thought that they were nuts and missing out on the good stuff in life. But now I feel like it might help save my life, so I'm motivated!

So far so good. The kids bring home cookies and candy and I don't touch them. I even helped make chocolate chip cookies for dessert a few weeks back and didn't snitch a single smidgen. Last year, when A brought home candy from school, I drooled over it and begged for the Kit Kats and Twixes. This year I get nothing. Nada. Zip. Zilch. Nothing for Easter, my birthday, Halloween, Thanksgiving or Christmas. Every kids dream, right? No candy taxes to Mom for the next year.

Anyone who's done this before - any tips on what to avoid and how to endure?

Good News

We got the results of the PET scan today. All spots are showing reduced activity and 2 of the 5 bone spots that were initially most significant are now showing no activity and even some bone growth. The plan now is to  continue with chemo for another 3 months (I'm getting an infusion as I type) and then to do another scan. If all goes well we'll then discuss surgery and hormone inhibitors. This is slightly better news than I was expecting and way better than I was fearing. Now for the next 3 months I'm going to continue to do everything I can to help my body heal on it's own. And then try to hold that state for as long as possible. Every extra day is a bonus and a blessing. Hopefully I'll remember that and feel that way even if I keep getting "good news" for years to come.

Quick Update

I finished my first 3 months of chemotherapy treatments last week. And not too much worse for the wear so far. Aside from extra fatigue, I pretty much continue to evade all other common chemo side-effects and I continue to count my many many blessings!

I had a PET scan (full body cancer scan) this week to determine how well the chemo has done its job so far. I will find out the results of that scan in 2 more weeks. Here's how these results could pan out:

A) Complete remission. (very unlikely) No more chemo. Whoo Hoo! On to surgery.
B) Measurable reduction. (most likely) I'm guessng 20-30% based on how much the tumors in the breast have reduced. In this case we carry on with chemo for 3 more months and then measure again.
C) No shrinkage, but no new growth. (also likely) This would be disappointing, but acceptable. We'd then have to decide if we do 3 more months of the same chemo or if we switch tracks to another chemo or to hormone therapy.
D) Growth. (please, no) But again, there are still other therapies to try so it's not the end of the world.

Now to go enjoy my 2 weeks of not knowing in sweet ignorant bliss.

My 'Word' This Year

At my cancer support group last week we talked about setting goals for the year. We were asked to choose a single word and then to focus our goals around that word - and to keep that word in mind as we made decisions throughout the year.

My word this year is PREPARE.
For me this means...

1. Prepare to meet God.
1. *Start each day with a prayer dedicating my time that day to Him. Then practice and learn service in His way.
2. *Attend the temple bi-weekly to bring me back into focus and closeness with Him.
2. Prepare to leave my family.
1. **Get my will/trust done.
2. **Document account/password information.
3. **Document my death wishes and funeral wishes.
4. **Start a habit of writing regular love notes to my husband and kids.
5. Help finish my mom's personal history (a family undertaking).
6. Read at least one personal history of a previously deceased family member.
7. Write my personal history. Include parental advice on key topics such as friends, schooling, dating, marriage, raising kids, making big decisions, seeking a personal testimony, etc. This goal will likely expand beyond this year.
3. Prepare to kick cancer's butt and live 60 more years.
1. *Learn and implement the cancer fighting 'Alkaline Diet'.
2. Learn relaxation techniques.
3. **Make it to bed on time and prioritize my sleep.
4. **Exercise as often and as much as my body will allow (factoring in my own naps and a busy 18-month-old).
5. **Make it through chemo, surgery and everything else they throw at me with an Attitude of Gratitude for the best cancer fighting knowledge we have so far and for the family and friends who carry me and my family through it both physically and emotionally.

* Key goal for the year.

** A habit already going, or a goal already almost done.

(Check out my 'Goal Progress' link at the top of the page)

I've heard some other great words this year: Love, Determination, Routine, Happiness. What word would you pick?

Chemo By The Numbers

Today is chemo day.

# of chemo treatments I've received: 8
# of treatments still to go: 10 (maybe more)
# of chemo treatments my mom received over her 14 year battle: over 60 (in 7 different sessions)

I receive my treatments from the same facility my mom went to. Most of the nurses recognize me as Linda's daughter and have made comments about how wonderful and kind my mom was and how loving and supportive my dad was and how he'd sit and read to her during her infusions. It's nice going to a place where a good reputation has already been set for me and where I feel a connection with my mom as I literally share in her experience.

What is it like in the chemo room?
The room is about 3x long as it is wide, one wall is all windows that face a small courtyard, the opposite wall is a long desk where the nurses sit and work. All along the window wall is a column of green leather recliners. Facing these recliners, down the middle part of the room is a second column of recliners.

# of recliners in the room: 16
# of chemo nurses on duty: 6 (plus 3 others who help only with the starting blood work)
# of female nurses: 3
# of male nurses: 3 (The guys are my favorites. More happy, more kind. And they worked with my mom more often.)

# of patients being treated at once (including me): 13
# of male patients: 8
# of female patients: 5
# of patients in their 30's: 1 (me)
# of patients in their 40's: 6 (3 women, 3 men)
# of patients between 50-70: 3 (all men)
# of patients over 70: 3 (1 woman, 2 men)
# of patients with at least one person sitting by them: 11
# of patients with multiple attendants: 4
# of patients asleep: 7
# of patients without hair: 7 (3 women, 4 men)
# of patients dressed up for the occasion: 2 (do they have a presentation to give after this or something?)

# of odd looks I get as I try to observe and count the numbers: 19
# of nurses asking me if I'm lost: 1

What is it like to get chemo?
# of needle pokes I get: 1 (thanks to my port they get it right every time - as opposed to the multiple pokes I often get when getting ivs in my arm)
# of times it hurts: 1/4 (much less painful than an arm iv)
# of bags hanging from my iv rack: 4 or 5 (depending on the treatment that day)
# of hours hooked up to iv: 3
# of hours at the clinic (including doctor visits and preparation time): 4-5
# of hours patients who get the once-every-3-weeks treatment might be there: 6-8
# of times I shuffle with my iv pole to the bathroom: 2
# of blankets I request from the warmer: 2
# of hours I typically sleep: 1
# of meals consumed during treatment: 1 (typically Anthony brings in lunch from Subway)
# of books we've read together during treatment: 3/4 of The Beyonders

That's all I can think to report on. Did I miss anything? What are you curious about with this process?

A Better Day

For the sake of balance, I want to report on a good day too. Monday was a good day. I got to sleep in. My girls played happily in the playroom with a friend for an hour which gave me time to exercise. I implemented a new "healthy eating" system for teaching my kids (and myself) about healthy, balanced food choices. I took a little nap while my kids watched a little TV and then we turned it off for the day. I helped A get his homework done. I made homemade pizza for dinner with whole wheat flour and turkey pepperoni.  I turned on some Disneyland music and the kids and I danced around the kitchen and talked about our upcoming trip while the pizza cooked. We had a fun family outing to Walmart where we played with all the toys and didn't buy any. I laughed with my kids. I cuddled with my kids. My husband read to me as I fell peacefully asleep that night. Tuesday was similar. These may not be my ultimate "best" days of motherhood, but they are normal days. They are good, happy days.

I'm Not SuperMom. Go Figure.

Friday turned out a bit bumpy. The morning was ok, but when my afternoon nap was interrupted after only 10 minutes I spent the rest of the day trapped in exhaustion. So for the next 5 hours I layed on the couch half-asleep while my children "took care of themselves."

My 2 oldest watched a marathon of My Little Pony (my least favorite Netflix show) while my toddler wandered around the kitchen pulling out every pan and tupperware and dancing on the table until I finally gave up plucking her down and pushing away the chairs (which took all of two attempts). Around 5pm my bleary-eyed children, noticing their rumbling bellies, bounced on my lifeless body complaining about hunger. This elicited some response from me like, "You guys are mature enough to cook your own dinner now. Don't burn anything... like the whole the house." Eager to prove their independence they disappeared into the pantry, returning to the couch moments later with cupfuls of dry Marshmallow Mateys and a large helping of brownies. I congratulated them on "eating their colors" and reminded them to feed the baby too. I'm not sure if the baby ate any of the brownie or just used it as a crayon to decorate her face, clothes, hair, legs, floor, chairs and walls. Yeah, not really my best day of motherhood (but not my worst either). And it's not like I was preoccupied. Nor did I lack ideas of better things to do with my adorable children. I just didn't have the energy to care. Thank you chemo.

Ok, so I've been anticipating this from the first mention of chemo. I watched my mom go through it multiple times and she and I often compared being on chemo to going through pregnancy. It lasts about as long, wipes you out and makes you nauseated (and often a handful of other similar challenges). If I wasn't on chemo there's an ok chance I might have opted for pregnancy #4, so I suppose I could be in this exhausted state one way or another. It's frustrating though.

By the time S was born I was feeling pretty lousy about my motherhood. We watched 8-10 hours of TV a day, ate 3 square meals of cereal and were lucky to bathe the kids once a week. During the past year I've managed to wean back our screen time (computer included) to under 2 hours a day, implemented a program to regulate meal/snack times and food choices, and had introduced daily chores (my children learned how to put away their own clean laundry!). I was on the UP and I was feeling a wee bit super-momish.

But exhaustion has returned. Maybe not everyday, but more often lately. I tease Anthony that his blog post about Service jinxed us. I've been tired ever since that post. It just seems to be the way of things. 2 steps forward, 2 steps back.

But my sister reminded me Friday night that we weren't raised by a SuperMom either. She recalls being a TV addict as a kid and I remember eating a LOT of cereal, often after refusing to eat dinner. From my motherhood vantage point I look back and imagine that my sisters and I were picky and whiny and our mom was tired and frustrated so she just let it go. But in my childhood memory I recall being supremely happy. My mom managed to instill us with love and joy regardless of all the cereal and VHS movies. And somehow my sisters and I turned out to be happy functional adults who watch little TV and enjoy healthy meals. My sister also reminded me that my kids are in a home where they are very much loved, they are not abused or neglected, and they are being taught good values. Despite all the parenting magazines recommendations, despite the super programs of the other supermoms in the neighborhood, despite the lack of soccer and dance classes, life goes on (hallelujah!). With just as much chance to turn out as normal as the next guy. No super heroes here... and it's fine. It's fine. Now back to bed.