Taking off against the wind

Mornings don't go as planned. :)

We received truancy letters from the school for the kids for tardies and absences. We are required to attend a class, pay money for the class, and go to court if we don't go to the class.  I called the office and told them I have cancer and everything is magically waived.  Wahoo for cancer.  :)  (Haven't pulled the cancer card yet, but today I did and had no problem with it.)

My surgeon's office called.  Apparently my surgeon wants to do an MRI biopsy on the left breast even though nothing showed up on the ultrasound.  I asked about false positives on MRIs and the radiologist's recommendation, and the nurse (my RS Pres) said Jennifer is thorough and cancer could still be there and not show up on the ultra sound.  Bottom line - She'd rather make sure than not. If I have decided on bi-lateral mysectomy then it doesn't matter.  If not and it is cancer, then we should know before it disappears during chemo so tissue can be removed on the left side during surgery.  I am appreciative of the thoroughness but can't help feeling annoyed.  I wish the doctors could all get in the same room, on the same day, at the same time, and preferably while I'm there :), so I don't have to keep going back to the hospital for more tests.  Most likely it's a false positive.  I guess when the doctors say jump, I jump.  Arg.  UPDATE: It was a false positive.  No biopsy and no detected cancer on the left side!

Camryn and Naomi (her friend who is a great way for me to get things done around the house) decided to decorate the wall with stamps and then accidentally spill milk on the floor. Note: Wall disasters and spilled milk sometimes make moms cry.  Today it did - I held the tears until I was in my room where they couldn't see.  

Received the perfect quote from Kate.  Her timing and choice of words were priceless.  "When everything seems to be going against you, remember that the airplane takes off against the wind, not with it."  - Henry Ford.  Lots of wind today.  This quote helped me get off the ground.  Love you, Kate.

Filling out loan apps and reviewing sellers disclosures.   Buying a house in the midst of all of this.  When it rains it pours. Thankful Bryce has been taking care of most of the house stuff.   

Maybe my house will get clean today.  :) 

Adopted

I was very tired this morning.  Deacon woke up crying in the middle of the night for some reason, and I couldn't go to sleep for at least an hour after.  When I did get to sleep, Taylor came in a little later saying he had a bad dream.  I wanted to skip our morning walk because I was exhausted, but realized I will probably be tired every day.  I can sleep and rest later in the day, but something needs to get me out of bed. 

I have an ultrasound on the left side today.  A spot showed up on my MRI, but the radiologist expected it to be a false positive.  He said to forego a biopsy if nothing was found in the ultrasound.  I'm not that worried about it because it doesn't change my treatment plan at all, especially since the right side is much worse than the left could be.  It will just better inform me regarding my surgical decisions, which I'm waiting on for my genetic testing. UPDATE: Found nothing on the ultrasound.  Wahoo for false positives on the MRI!

I had chemo class and I am amazed at the amazing people I'm meeting on this health journey.  What stories people have and how inspiring they are.  I've learned that if life ever starts to get you down, talk to others.  You'll realize life isn't so bad.  :) 

There was a wonderful family at my chemo class.  They probably had 10+ family members for the other patient (Georgie) ... and then there was me.  Definitely felt like the odd one out on their family reunion.  (Bryce was willing to come but I told him it not to bother because it was a waste of time - I had already called the nurse to discuss what she'd be sharing.)  Despite my feelings of party crashing, this family was amazing and let's just say before the hour was over I had an invite to their real family reunion.  :)  Georgie was super cute, 50ish year old woman, and all her daughters and sisters were there.  She had so many questions and seemed so worried, and I wanted to help her.  I felt impressed to write her over the next few months.  Georgie's sister, Debbie sat next to me and was a great resource.  She seems to think the way I do, and she shared five years ago she had breast cancer.  She gave me her number and said to call any day, anytime, and before I left, Debbie's husband (I told you it was a family reunion) handed me his second copy of handwritten notes for me to take home.  What a wonderful family.  People are good. 

Promises of Health

Started our morning walks with Bryce.  6:30 wakeup and walk around the neighborhood and trail behind the condos.  It was great to get up.  Perfect way to start the day and jump start on the important things.  Our goal is to do it every morning, especially once chemo starts.  Bryce said he'll walk as slow as he has to (which is saying a lot)  :). 

Seminary with the kids this morning was about Daniel refusing the king's meat and the word of wisdom.  It's amazing how our seminary lessons have been the lessons I needed most.  (The last two weeks were courageous stories about about David & Goliath and Esther.)  :)  The Lord knows me!  I have such a testimony that as we try to serve others, the Lord ends up blessing us through that same service.  As I was bearing testimony to the kids about the word of wisdom and promising that following it will help us have healthy bodies, I thought to myself - what about me?  I've followed the word of wisdom and where is my promise of help?  Just as fast, the answer came.  And Taylor without knowing the thoughts in my head shared it just as I was finishing the same thought.  "Mom, your body will be strong to fight your cancer."  How grateful I am for the testimony of my young boy.  And how grateful I am for the promises of the word of wisdom and temple covenants that keep our minds and bodies healthy and receptive to the Spirit. 

Bryce told his boss today about my cancer.  Looks like Tute may sponsor my genome being sequenced.  Wahoo for that guy.

Samuel the Fighter

Grateful for the lesson I learned in scripture study tonight.  We read about Samuel the Lamanite and after we discussed what we read, Bryce asked what I learned.  Something new stuck out to me in the story this time.  Samuel was retreating from the city and the Lord told him to go back.  He did, but they wouldn't let him in the city wall.  Rather than Samuel saying, "I tried Lord.  They won't let me in.  I can't."  He thought of how he could fulfill what the Lord asked him to do.  He climbed the wall.  He didn't give up.  He fought.  I admired Samuel tonight because he was a fighter.  He fought to do what the Lord asked him to do, and he didn't give up when people told him no or that he couldn't.  The word fight has meant a lot to me the last couple of weeks, and I am grateful for the scriptures and examples and stories of prophets that lift and encourage me. 

Finding answers

I was annoyed talking to the genetic counselor this morning. Bryce had a very different impression. He thought she was very tactful, respectful, and diplomatic.  She was, but I felt like I was being pried open. I didn't want to share anything meaningful and just kept it very superficial. I have never met the counselor before, seen her picture, or even talked to her before today.  I felt like I was on a customer service call, but that we were talking about my life and cancer.  I'm not one to be offended easily, and I'm usually very open to sharing, but not to some person on the phone I've never met before.  I wasn't rude, but I got off the phone feel very annoyed and involuntarily exposed.  Thanks insurance for requiring a genetic counseling appointment to run my genetic test.    

Felt good about a lot of things today. Have results back and a lot of finality to some questions. My oncologists said very tactically he wouldn't get pregnant. (Good thing considering he's a dude). :)  Pregnancy would feed the very thing that's feeding my cancer and the idea scares him. (It has scared me too and is what Bryce and I have felt the last couple of weeks.) Coming to terms with it and closing that chapter is difficult. It's helpful to have a medical opinion that supports those feelings, as well as spiritual confirmations.  I liked this second oncologist and think I will go with him.  He's in Provo which is nice and very aware of the current research and seemed to know a lot more (or at least shared a lot more than the Huntsman oncologist) regarding the things Bryce and I are interested in (genetic profiling of my tumor, personalized medicine, etc.)  Still same treatment plan as the SL oncologist, but I felt he was more aware and open to novel findings. 

Feeling normal again

Great day today.  Had tests in the morning and was home by 11:30 so I had the rest of the day to be a "normal" mom.  Today is Wednesday and people wore pink, took pictures and posted with the hashtag #wearpinkforpam.  I felt a little silly with so much attention, but very loved at the same time.  Taylor wanted to count tonight how many families are praying for us, and we counted 100 - just off of my Mom's post announcing breast cancer.  What a strength we are feeling.  We came home from the park and there was dinner on our doorstop, with no idea who it was from.  We feel the love of the Lord and love and faith from family and friends.  

I had my blood taken at Bryce's work so we can have my genome sequenced.  Tomorrow will be the first day this week I'm not having  both arms pricked, let alone one.  Wahoo!  I have a genetic counseling apt. at 6am int he morning via phone because Myriad won't run my genetic test until insurance approves it, and insurance won't approve it until I talk to a genetic counselor.  Doesn't a husband with a PhD in human genetics count?  :)  

I also have a second oncology appointment but think I will cancel because my FISH results for HER2 aren't back yet.  Guess I'll have to cancel again?  He'll probably still tell me to come anyway, but I think I'll just keep being stubborn.

As I was eating breakfast by myself at Kneaders this morning, killing time for about 20 minutes between appointments, I opened up my Instagram account and found the Gills post.  Brian was wearing pink and I saw the back of Amy with her pick ribbon and signing I love you.  It was the perfect moment. I had forgotten it was even Wednesday.  I felt so loved, supported, watched over, and strengthened.  I am so grateful for those dear friends of mine, as well as the many others who have shown their support. Love you all. 

Perspective

Good news!  Got my PET back and the cancer is localized. Wahoo!!

(Perspective is amazing, isn't it?  Never thought I would be excited about cancer news.  Guess when you have it you can be grateful it hasn't spread!  How I love perspective and hope I can keep a great one.)

Not so strong

Hard day today. Cancer beat me. For all the strength I've felt through this whole process I didn't have it today. I was discouraged and annoyed. Annoyed that seeing two doctors took 7 hours, that chemo will be longer than I anticipated, that my doctors will meet with me before they have concrete results which just wastes our time and leaves me with lots of questions once I have my results. I actually cancelled my other oncologist apt until I do have my results. 

At the fertility office I felt good and like we had great options for fertility. Then on the way home when I calculated the odds, I realized we actually didn't have much at all, if anything. I feel like cancer is taking away 10 years of my life and that by tonight I have to make up my mind what I'm doing for the next 30 years.  The odds are not in our favor, if we have any at all.   An emotional time for both me and Bryce. Lots of tears.

Sharing with our families

Told our families today. Two feelings: just feeling sick and like we unloaded a bomb on everyone. Feeling relieved and energized at the power of family and seeing the immediate support.

We put together a presentation and I'm glad we did.  We held a telephone conference with all the siblings and our parents to share.  It was hard to hear the emotion on the other line, but there is power in family and combined faith.  

Pretend for one more day

Called my dad today.  (I think we will tell our families this weekend.)  It was nice to pretend for one more phone call with him that I don't have cancer.  That everything was ok, that today and life was just like any other day.  Today will probably the last, at least for a while.

I am excited about some ideas Bryce and I have that give some meaning and outward focus to breast cancer.  As we embark on this cancer journey, we are learning so much and identifying where the gaps are between science and medicine.  We have a few blog ideas - knowmygene, findmycure, finding answers through personalized medicine.  I want to make others aware (who don't have a husband with a phd in genetics) of what is available to them, and empower them with knowledge so they can be informed patients seeking the best care.  We'll see what happens.  Dream big, right?  :) 

Journal entry - a little later in the day

So maybe I'm not as tough as I think I am, or I'm realizing and coming to terms that I am extremely emotional. I walked into my Obgyn office today to register for access to all of my test results. I saw a pregnant woman and her husband, and a nurse with their ultrasound pics. Tears came from nowhere and my heart ached. To hold a little one in my arms, to watch my kids grow up overnight as I bring a newborn home, and watch them love their new sibling.  I won't be pregnant for a minimum of five years, maybe 10, or maybe not ever again. I recognize I need to be grateful for what I do have but I couldn't help but miss it - and wish I were well so I could be getting pregnant right now instead of fighting cancer. How grateful I am for Taylor, Dakota, Camryn, and Deacon and not only to be a mother but to be their mother.  

Broken Arm

Good day today.  This cancer thing is starting to sink in.  My outlook for today - Cancer is like a broken arm.  It's broken, time to get it fixed.  Maybe we should talk to the kids tonight because I'm not feeling emotional and instead brave and strong.  :)  

Snowflakes

Having a hard time today.  Getting out of bed was hard this morning.  Sickest feeling I've ever had in my stomach.  I don't like going to sleep, waking up, or driving.  It gives me time to think.  I need to find something else to think about.  I can stay distracted and have been very busy with doc apts, scheduling, kids, and I would like time to just read and research. My house is a mess!!  My emotions are very raw.  If Deacon starts throwing a fit or Dakota is rude to me I just want to cry.  I don't know what I'm crying about. I'm not scared of dying or even worried.  I guess I'm a little angry.  Like why do I have to spend the rest of my year fighting this thing?  I just feel emotional and want to be held and just cry.  It's good to recognize my blessings:

• Girls folded laundry and put them in everyone's room while I took Taylor to school.
• It snowed today!  
• Snowball fight with Camryn at the library.  It reminded me of my wedding day and my snowball fight with Bryce.  Wet ground, snowing, just a bit of snow on the grass to pick up and throw. Brought back good memories.
• Watching the snow fall from the sky inside the library.  Camryn noticed, and the three of us stopped to enjoy it.  How magnificent this moment was, and our time looking up at snowflakes was the highlight of my day.  How easy it can be to miss or rush through moments like these. News of cancer helps me recognize what is important in life, and realize that everything else is just a distraction.  
• I was able to see dermatologist an hour after I called because of a cancellation.  No skin cancer on my face despite a couple of spots I was concerned about. Wahoo!
• Taylor coming home.  Such a relief and warmth to see him and his smile.  

The Little Things

I love this quote from President Uchtdorf:

"There is something in each day to embrace and cherish.  There is something in each day that can bring gratitude and joy if only we will see and appreciate it." 

 - Dieter F. Uchtdorf

(Regrets and Resolutions, Oct 2012) 

I have a quote on my kitchen wall that says "Enjoy the little things in life, for one day you will look back and realize they were the big things."

Today as I was reading about cancer on the computer Deacon came up to me and said, "Hold me mama."  It warmed my heart.  I held him and we snuggled in my bed and laughed and talked.  It was the best.  Such a little thing, and yet something big. Something I was able to embrace and cherish and hold on to for the rest of the day. How I love that boy, and all of my kids. How grateful I am for gratitude, as funny as that sounds, and the little things.   

April 13, 2015 - Diagnosis Day

I was right. It's cancer. Such hard words to say and maybe they will get easier the more I say it. It's not a surprise though. I feel the Lord has been preparing me. Prompting me to text my RS President who works with breast cancer docs to get an appointment. Listening to conference and not feeling any of the talks were written for me but knowing in about a week they would be. Feeling a range of emotions but then ultimately feeling of peace, confidence, and a faith stronger than I've felt before. My patriarchal blessings gives some great insight and counsel. In it I am encouraged to be grateful and continue to thank Heavenly Father for my many blessings. If anything will get me through this it will be that. Today I am grateful for: 

•  Kaylee seeing my car stopped on the side of the road this morning and asking me if I was ok. (Just having a quiet prayerful moment to myself before events unfolded today.) 
• Camryn politely asking Deacon as I walk in the house "Deacon, do you need a diaper change?" Mom, will you please help me change Deacon's poopy diaper?" 
• Starburst bracelet from Taylor. He didn't know I found out about cancer today, but his timing was priceless. 

(He told me, "Lots of Ms for Mom!")

• From Kaylee who came over with these after putting the facts together when I asked if she could watch the kids for another doctor's appointment.  She volunteered to take the kids to the park for a picnic.  How grateful I am that she is next door, for so many reasons.   

• Call from Brian Gill in Abu Dhabi.  He actually worked with the surgeon I'm meeting tomorrow and recommended her as the best breast surgeon in the state.  He called and emailed both me and her immediately.
• Visit from Heidi Porter (my RS Pres) who actually works with my surgeon and happened to work today which rarely happens and checked tomorrow's schedule when she will be the nurse attending to me. 
• I know the Lord is watching out for me and helping me feel of his love.  I am not alone.

April 13, 2015

Today is going to be a great day. Bryce said we are celebrating today. The news of cancer free, or the adventure. :/. I am grateful for my testimony. For a knowledge of the gospel. For the temple and priesthood and covenants and promises that families can be together forever. Guess I'm ready as I'll ever be. I have my questions ready!

April 12, 2015

Had a great weekend trip in Zion.  The timing on this trip couldn't have been more perfect.  It was nice to be together as a family, without distractions.  We could just be together.  Lots of time for me and Bryce to talk about our possible road ahead, and at the same time forget about cancer.  

Tomorrow we find out if I have it. I wish today would never end.  My last day that life could be "normal."  Here goes nothing - and yet everything.

I told Bryce on our drive home from Zion that come what may, I wanted to be buried in Provo.  It was where I was born, it was where I was married, and if I died there too it's where I wanted to be.  Through our tears, he said, "That's what I came up with too."

Mammogram at 30?!

I'm 30 and getting a mammogram.  This is crazy.  

This all happens so fast. Had mammogram, ultrasound and biopsy. Mass in breast is at least 5 cm. not a cyst, and definitely irregularly shaped and all over the place. Lots of calcification in the middle which the radiologist said isn't good. I was in good spirits at the hospital. It was what I expected and I was grateful they did biopsy immediately. 

I think I have cancer. Not just skin cancer, but breast cancer. At age 30. It's usually late when it's recognizable this young, usually aggressive and doesn't respond well to treatment.  What if I die?  I never anticipated being this young. What about my kids?  Don't they need a mother?!  How awful to leave Bryce alone. I read our patriarchal blessings today. They don't sound like I'll die at 30!  I started questioning the purpose of life. I guess I always felt like I had lots of years to figure it out and do something meaningful with my life. If you had six months to live (who knows if that's too short or even too long) how would you spend it?  What is the most important thing I can be doing right now?  I love my kids. I hold them and snuggle them and look in to their eyes. I have never hoped before like I am now. Not so much that I'll make it through but that they will. With whatever may come. That they can be strong. That they can endure. That they can feel the power of God and know that they are never alone. As we were at the park today and I looked up at the mountains, I was reminded that Heavenly Father knows me. He is aware of me. He knows what I'm experiencing. I have to trust him. I don't know how this makes sense or why or how this fits in to the bigger part of the plan. I have to be willing to trust. Maybe five years from now this will all be gone and life will be normal and I'll look at this as a chapter in my life. But if not... I have such hope that all the things I've believed my whole life will happen for me and my family. That they will be faithful so we can be together some day.   I am grateful for experiences I have had that have strengthened my testimony. It's interesting how the Lord prepares you. I spent last year keeping track of promptings and acting on them. Because of those experiences I cannot deny that the Lord knows me personally. Because I know that, I know I am not alone and that He loves me and is aware of me, and because of that I can trust Him. 

So many more questions and much to learn. Already I am tired of reading. It's not reading to learn - it's reading to live. Which one would think would be more motivating. It's emotional and exhausting. 

I am grateful for the many blessings I see already. 

• Lindsay was with the kids all morning during my apt and while Bryce and I had lunch. 
• She made dinner for us and cleaned my kitchen. 
• Bryce and Camryn brought home tulips for me

I want to know how to help Bryce. I can't image what this might be like for him.  I appreciate his affection and I am grateful we have come together and strengthened our relationship through this already. 

We were at lunch today and talking about how to tell the kids. Bryce said we need to start by giving them something tangible. Pink ribbons. I crumbled. It became so real for me then. And so scary. I just started crying. Openly in the sandwich shop. He did too. Never will I judge anyone again. Who knows what someone is going through at first glance. Hi, I'm eating lunch with my husband and I just found out I pretty much have breast cancer. How's your day?  :). Oh to think of others. How much better life is when we do. We talked about how we can think of others and find purpose. We talked about early detection for our sisters and daughters. How guilty(?) I feel for my genes and giving them to my daughters. Even if treatments go well and I can have more kids which is very uncertain at this point and highly unlikely with chemo/radiation - do I want to pass this on?  I guess I will have to make that decision when the time comes and be prayerful. 

My topics to study are

- a good surgeon and oncologist

- clinical trials - as that is where the most current treatment will be 

- fertility

I am grateful I have four children. That we had kids right away and that it has been very easy for me to get pregnant. I am grateful for the counsel of a prophet. We have a wonderful family of six. That may be the extent of our family tree. It may not be. But I know so many times when I held Deacon as a baby in the mornings or put him down at night or just held him, that the Lord let me know - almost daily- to enjoy it and treasure it because I might not get that chance again.  I didn't know if that meant Deacon was my last or what that feeling meant, but I knew to cherish those moments. How grateful I am now for those promptings. I did enjoy each moment and treasured them. I'm surprised I'm at peace with this being the size of our family. I guess I feel prepared and trust the Lord. Bryce and I have always said after Taylor was born that one was enough. That being a parent was such a privilege and blessing and we didn't have to have many children to experience those blessings. How blessed we are that we have Taylor, Dakota, Camryn, and Deacon. 

Range of emotions

I feel scared today.  Fearful.  And angry.  I want to push these feelings aside.  I don't even know anything, so I have no reason to be scared or angry.  My right arm and by my right rib cage hurt.  Like I have a big bruise.  It's sore when I reach.  Bryce was trying to help massage my arm and I had him stop because it hurt too much.  

I'm exhausted.  Hope it's general afternoon tiredness.  

Easy to get reading again

Took a break from thinking about breast cancer.  Bryce was reading and had something open on the computer about breast cancer that he left open.  I read it and then started looking things up.  Learned about different lumps in the breast, mammograms and ultrasounds.  Looked at lots of mammograms so hopefully I can gain some information from looking at mine.  

So many questions

Received a call from the radiology department at the hospital. Mammogram and ultrasound scheduled for next Thursday at 10am.  Mammogram should take 25 minutes, Ultrasound 15 minutes.  No biopsy will be performed.  The radiologists will view the "film" (see below) and a couple of days later give them to my OB, then my OB will contact me.  At that point OB may recommend a biopsy.  Frustrating thing is that next Thursday I really won't have any new information.  Also, person on the phone couldn't tell me what kind of mammogram I was having, and whether the results were on film or digital.  Shouldn't that matter and don't people understand what they do for a living?

Questions (which I thought of after I got off the phone)  -

• Who is the radiologist reading my reports?  Am I able to choose my radiologist?
• Person on the phone asked if having my mammogram at Utah Valley Regional Medical Center was ok - is the selection of the medical center performing my mammogram important?

April 1, 2015

Went to the doctor today.  I was concerned about a visible lump on my breast and what I thought was a mass inside the breast.  Bryce told me not to worry.  I am 30, no breast cancer history in the family.  Not a big deal.  

The doctor informed me the visible lump was a lymph node.  Lymph nodes usually come and go. Sometimes they swell due to infection. (I had already seen two other docs about these lymph nodes over the last 2 years - so they had been around for awhile.) The visible one the doctor told me one was hard, which isn't a good sign - and there was definitely a mass in the breast.  

Of course one's first appointment tells very little about what is to come.  Make another appointment, wait, more tests, wait again.  Next week is a mammogram, ultra sound, and possible biopsy. Could be nothing.  Could be the start of something huge.  

It's easy to play the what-if game, so I try to shut out those ideas.  It's a little scary to think about what could be, but I focus on what I know.  I came home and read about mammograms and ultra sounds. What questions to ask and how to read results.  

I'm writing to record my discoveries (for myself and maybe others) as I unfold the possibilities available in this genomic revolution. :) 

PS - Not an April Fool's joke