Fear and Fighting

I am not a person who does well in the "Waiting Place." {Dr. Seuss, "Oh, the Places You'll Go.}  It's the place where people are "just waiting." Unfortunately, I've been stuck just waiting to learn more about this cancer returning and waiting for the fight to begin.  I'm waiting for more information about my treatment, for answers on how this happened, what I can do about it, and how long I can expect to live by fighting.  The waiting and not knowing leaves time to think about the hardest part of cancer this time: that there is NO CURE!   I still have so much left to do to fulfill my role as wife and mother and "to live so that [I] can touch the hearts, build the hopes, and teach mankind," as my patriarchal blessing promises.

Sunday was one of those days that hit hard.  I was emotional, even while trying to stay strong.  I don't mind talking about cancer to anyone, and I don't feel awkward about sharing with others and comforting and mourning with those around me.  We all have "stuff" we are dealing with, whether it is out in the open and easily seen or silent and personal.  For some reason, the stress of waiting and the emotions from the unknown hit me all at once on Sunday, and I cried....a lot.

Part of these emotions came from not knowing how much time I have left.  I have so much still to do---my Bucket List is long, and many of the items on there revolve around my family.  I don't want to leave them without their wife and mom.  We were learning about how the role of parents is ordained of God.  Specifically, the discussion about roles of mothers hit me and brought into focus how much I still need to do to fulfill this role.  Ezra Taft Benson taught that, "[mothers] are...the very heart and soul of the family." My family is the reason I will fight.  I will fight for the rest of my life, but I don't want to think about this life being cut short.  "A child needs a mother mother than all the things money can buy."  {Sermons and Writings of Ezra Taft Benson, 217.}  Even though I've heard the comfort that "if you can fix it with money, don't worry about it," this time around, I don't know if we can fix it with money, and that scares me.

Having cancer return at Stage 4 isn't scary because I'm scared to die; I'm scared to not have the time or energy to be a mother, and I don't want to leave my children and husband alone too soon.  This fear was right in my face when our lesson specifically listed out what should be done to be an effective mother, from Ezra Taft Benson.   The first was, whenever possible, to "be at the crossroads when your children are either coming or going." How can I be there, if I'm not here?  It's terrifying!  Second, "take time be a real friend to your children.....Third, take time to read to your children.....Fourth, take time to pray with your children.....Fifth, take time to have a meaningful weekly home evening....Sixth, take time to be together at mealtimes as often as possible....Seventh, take time daily to read the scriptures together as a family....Eighth, take time to do things as a family.....Ninth, take time to teach your children....Tenth, take time to truly love your children."  {Ezra Taft Benson} If you hadn't noticed,  all of these roles of motherhood require us to "take time."  What if time is the very thing I don't have in this world?  How am I going to make as much time as possible when I don't know how much time I have left?  THIS is the scary thing about cancer, specifically stage 4, and these are the very things I need to fill my time with, whatever time I have.

Stage 4 cancer, something that has no cure, is scary.  I'm afraid to not be able to leave enough of my influence with these little souls who have been sent to my life.  But, I am going to fight.  I will "not go gentle into that good night."  I will "...rage, rage against the dying of the night." {Dylan Thomas} I am a fighter and will face this fear with all I have.

I leave you with a quote my mother-in-law found me, one that summed up my emotions from that day.  "There is no living thing that is not afraid when it faces danger.  The true courage is in facing danger when you are afraid." {L. Frank Baum}  May I push out fear by showing "true courage" in the fight of my life.        

PET Scan Results

The radiation oncologist called me today with the results of my PET scan.  We have a second miracle!

The scan shows the bone metastases that we already knew about.  In addition, there are several lymph nodes in my chest with activity, which is a suggestion of cancer.  However, the scan shows NOTHING in my lungs or liver!

Beyond the extra lymph nodes, these results add nothing new to the list of areas we already knew about.  It is not great that there are a number of bone metastases, but this is good news.  Most often, the type of cancer I have returns to those 3 areas--brain, liver, and lungs.  Have no cancerous activity in those major spots is a relief.  No worse news is good news these days!

Thank you for your prayers, thoughts, messages, concern, suggestions, and love.  Now we wait for my appointment next week before knowing anything further into the battle plan.

Radiation Oncologist

On Wednesday morning, I had my first appointment with a radiation oncologist.  This was something completely new to me, as I never went the radiation route the first time around.

After turning in the small novel of paperwork, I met the wonderful nurses, who were very sweet and personable.  The doctor was also kind.  However, the PET scan report wasn't in, so I was disappointed with the overall appointment.  I felt like it was almost a waste of time because I don't know much more than I did last week without the report from the latest scan.

We talked about plans in probabilities.  IF the cancer is just in my bones, it's something that is quite frequent, and they deal with it all the time.  MOST LIKELY I will have localized radiation for 3-4 weeks, 5 days a week, but that depends on the findings from the report.  More than likely, I won't have too many negative side effects from the radiation.  My skin will have minimal damage, and most people only complain of fatigue.  IF cancer is all over my body, radiation isn't as effective.  They are most effective in localization, and he predicts they will focus on my back--around the areas in my Thoracic that are also the sites of my fractures.  This will help with pain and also on prevention of the spread of cancer and on preventing further potential fractures.  

He suggested that I see a neurosurgeon for a consultation on possible bone strengthening measures.  This is contradictory to what my pain doc said about his discussion with the head radiologist who compiled the report on my MRI.

 I was able to see the pictures from my MRI, especially the large, dark, cancerous spots on the vertebrae with fractures.  Again, I kept thinking about how thankful I am that I fell and was able to catch this before it got completely out of control.

Overall, I came away with the feeling of needing more--more information, more answers, more of a plan.  It looks like I will have to wait.

PET Scan

Often getting an IV is the worst part of any medical procedure.  This was true, once again, for the PET scan I had on Tuesday.  I warned the tech that I am a hard stick.  Either she didn't believe me or thought her skills were that good.  She stuck me and dug around until she got it.  Then, when she tried to push that lovely radioactive tracer into my vein, it blew.  Try #2 on the other arm failed miserably.  "Have you had anything to drink today? That could be why your veins are being to difficult."  {Well, aren't you used to that, since in order to prepare for this scan, I wasn't able to eat or drink for 6 hours prior? Duh!}  Thankfully, she called in reinforcements, and I finally was able to be radioactive once again.

After the injection, I had to sit in a chair and wait for my entire body to absorb the tracer.  After a 45 minute nap, it was time to move to to the machine.  First, I was scanned with my arms above my head, then with my hands down by my sides.  The total scan was about 25 minutes of lying still in a cold room, listening to the hum of the machine.  Another quick nap, and I was ready to go.

On the way out, the 2nd tech was very comforting.  She apologized for things not going smoothly, but I assured her that it wasn't just them--I'm used to it happening!  I was told to not hug my babies and to keep them a few feet away from me for the rest of the day to prevent my radioactive state from passing on to them.  That was another reason to be grateful that the boys are away at Summer Camp Midland.

Now to just wait for the results to help us make a battle plan!

Angels Among Us

Many of the tender mercies we receive are because of the kindness of others.  Already I have been so blessed by the outpouring of love from those close to me, but am constantly amazed at the way that trials and suffering can connect us, even when we are strangers.  Our experiences do not have to be exactly the same for us to learn empathy and to mourn with those who mourn and comfort those who stand in need of comfort.

This box of "happy thoughts" was placed up in my closet when I heard those amazing words---"You're Cancer FREE!" last year.  I had kept it open as a place to keep all the cards and kind words of encouragement when I was fighting the first round.  I pulled it out again and have already added more cards and uplifting words.  Thank you to those friends that have offered uplifting words and to the anonymous letter from a caring 9 yr-old.  I have a feeling I'm going to need a bigger box!

We experienced the first of what I'm sure will be many blessings from the kindness of strangers last weekend.  On Saturday night, Stephen and I were able to got out on a date.  We went to a movie and zoned out.  It was much easier to get lost in the tension of whether or not Ethan Hunt will complete another impossible mission rather than focusing on cancer.  Afterwards, we went to the Outback to get a few appetizers and talk.  Of course, we were crying over our wings and tuna.....and cheese fries, coconut shrimp, and Dr. Pepper.  (I have cancer......do I REALLY need to go without fatty foods and my favorite soda?)  It started to get late, and I think our server was ready to close out her section and go home.  She kept coming by to ask if we were alright (not really) or needed anything else (a new body?).  I joked that everyone must think we are breaking up!  She brought the check and came by a few times, saying she could take it whenever we were ready (hint, hint....give me the check so I can go home!!) A few minutes later, she returned, put down a ripped up credit card receipt and this note:

Stephen had written a note with his tip, telling her sorry that we took so long and we were not trying to be rude, by we had just found out that I had stage 4 breast cancer.  She told us that she believed in the power of positive things and that here is one thing to get us started on the journey.  They comped our whole meal!  Thank you, Rachel F.  There is still good in the world!  I tell you, this cancer thing is far-reaching.  It allows us to be angels on earth and lift others in their times of need.

To those of you who have already given so much of your time, love, and prayers, I thank you.  To those I don't know who have been touched by reading this blog and perhaps sending it on to others, I hope my journey of faith can help you find yours.  To those who will be following along or giving service in my name or for countless others, thank you.

There are miracles all around us!  

A Range of Emotions

I've been going through several steps of the grieving process for the last few days.  There was the initial shock/denial upon first hearing that the MRI found metastatic legions in addition to the fractures we were trying to find.  (This can't be!  How could this have happened?  Are you serious???)

I've been angry.

How in the world did my doctors miss this?  I did EVERYTHING I was supposed to do!!!!!  I even went BEYOND with further preventative measures than I HAD to do.  I had a bilateral mastectomy, which was supposed to give me a 98% removal of breast tissue and therefore a 98% chance that my breast cancer would not return.  I took Tamoxifen, even when I hated the side effects!  I stuck to my low-calorie diet almost religiously---Dr. Naqvi wanted me to only eat 1,000 calories/day, and I stayed around 1100.  I gave up sodas.  I started working out almost everyday.

How could ALL of those doctors missed this???  I've been to the ER 3 times in 2 months.  I've been in the hospital.  I've had ultrasounds, surgeries, follow-ups, assessments, and MY ONE-YEAR CANCER-FREE appointment!!!!  It took a FALL and a follow-up trip to a pain doctor for SOMEONE to suggest an MRI.  Shouldn't there have been red flags going off?  I have a history of breast cancer, for crying out loud!!!!  How did that CT scan I had in March not find ANY signs?   Why didn't anyone connect the dots that all of this pain---especially in someone who has a crazy high pain threshold---should set off alarms?

I feel frustrated that I have worked so hard to fight and become a survivor, only to have one good year  and have to start all over again.

I've been sad.  Mostly the sadness surrounds my family.  I don't want to leave them alone!  I have so much more that I want to do!  I want to teach my boys to be hard-working, honest, caring, considerate, kind, funny, intelligent young men.  I want to prepare them to go out into the world and do something great with their lives.  They are so young to be without a mom--so young that I'm afraid they will have no real memories of me as the years pass, only those fuzzy memories that are just from pictures and stories you've been told.  My boys need me!

I'm sad for Stephen.  How hard it is to be the spouse of a terminally ill person.  He wants to be supportive and helpful, but he needs support, too.  He's scared and angry and sad, too.  We have so many goals and dreams.  How will we fit a lifetime of experiences into such a short amount of time?  How will he find the time and energy to take over being both dad and mom?  How will he stay strong for the boys when he is alone and grieving?

After the tears stop, all these emotions go back to faith.  No one knows how much time they have left to live.  We don't even know the full scope of my disease.  I could live 5 years or perhaps up to 15, or much less.  At this point, we are all just guessing.  When it comes down to it, there are ways to make every moment--every second of every day count.  There are small miracles and silver linings in every day.  Instead of focusing on the anger and sadness, I am looking for the tender mercies.  I am understanding how little control we have over this thing we call time, and that all we can do is rely fully on the power of faith and the promise of our Savior that when we take his yoke upon us, there is nothing we can't bear.  

I also feel grateful and happy.  I am reminded of that feeling from my first diagnosis.  I was sad and angry and scared, but also felt peace and love.


Friends and family step up in times of great need.  I have an amazing support group, and I can see how that will only get stronger and larger as this journey continues.  How can I not feel blessed when I've already had so many acts of service and kindness and I've only been re-diagnosed for 5 days? It's an overwhelming outpouring of love, and I am so grateful.
 

I have not quite dipped into depression and am not yet trying to bargain with God, but I haven't reached a level of acceptance.  Yes, I have this.  No, I'm not happy about it.  I haven't yet cried all my tears, but I am going to fight with all I have to overcome this----AGAIN!  I keep trying to channel the strength and determination of this girl.  I did this once, and I can do it again!  Never give up.  Never stop improving!

P.S.  The first time around, I was driving home from one of the early appointments with my doctor and heard the song Try, by Pink.  That became a theme and an inspiration for my battle, to get up and keep trying.  Today, driving home I heard a song called Fight Song, by Rachel Platten.  I think that will be my battle cry for this time around.

The words are amazing, and the music is quite empowering.

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Losing friends and I'm chasing sleep
Everybody's worried about me
In too deep
Say I'm in too deep (in too deep)
And it's been two years
I miss my home
But there's a fire burning in my bones
Still believe
Yeah, I still believe

And all those things I didn't say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?

This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

A lot of fight left in me

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

This is my fight song (Hey!)
Take back my life song (Hey!)
Prove I'm alright song (Hey!)
My power's turned on
Starting right now I'll be strong (I'll be strong)
I'll play my fight song
And I don't really care if nobody else believes
'Cause I've still got a lot of fight left in me

Know I've still got a lot of fight left in me

The First Miracle

 I have never been more happy to hear that my brain is "unremarkable!"

We got the results of my CT scan on my brain today. 

Findings: ventricles have normal size and position. There is no evidence of mass, hemorrhage, or infarct. On the postcontrast study, no abnormal enhancement identified. 

This is the part that needs more clarification:

Small metastatic lesions may not be apparent by CT and if there is clinical concern of beau. Metastases, recommend MRI with and withou tgadolinium.

Review of bones of the calvarium show normally aerated paranasal sinuses and mastoid air cells. There is no evidence of lyric or blastocyst osseous process involving the bony calvarium. 

Impression: Unremarkable head CT

 I have the next test tomorrow, a PET scan of my full body to see if cancer is anywhere below my unremarkable head. 

Thank you for all the prayers, fasting, happy thoughts, and love. We have our first miracle, and there is no reason we can't hope for more!

Love you all!!