PET Results

Just got off the phone.


"No evidence of viable disease."



HOORAY!


I can relax for another 3-4 months.

PET Scan and ECHO #3

Today  I had my nine-month scans.  

Last time around was difficult, as I was focused on all that could go wrong and what I would most likely face with another diagnosis.  Stephen ran into Dr. Fleener that day and mentioned my anxiety.  She assured him that they would do everything they needed to do and she would make sure they called as soon as they received the reports.  

Flash forward to this time around.  I didn't have nearly the same difficulties with my emotions.  (Perhaps I'd cried all my tears for the month already.)  I was surprised with some beautiful flowers from my mom and dad, which just made my day that much brighter!

Surprisingly enough, Stephen ran into Dr. Fleener AGAIN!  I'm taking it as a small "tender mercy" that lets me know that I am watched over and cared for, that all the prayers for comfort offered by friends, family, and even those who hardly know me are heard.  

By now, I've mostly figured this scan thing out.  I try to get them both on the same day, so I get it all over with and receive the reports the same day.  I check in early, so the chemo nurses can access my port, and I don't have to experience the pain of IVs.  (Hey, if I've got this port for the rest of my life, I might as well us it to my advantage!  Also, I thought it was funny how the techs in the PET weren't "trained" on how to remove my port needle, so I had to go back to my chemo nurses to have it taken out!)  I remember to bring a book or magazine to read, as I have to sit  for 45 minutes to an hour to let that radioactive isotope "sugar water" infiltrate my body.   Don't forget to wear comfy, warm clothes, as it's freezing in that room and I have to hold my arms above my head for the scan.  Also, there's no point in wearing jewelry only to have to remove it before lying down on the bed of the machine.  Next time, I'll just try to get an earlier appointment.  The earlier I finish the scan, the earlier I can actually eat more than protein and green, leafy veggies + water.  Fruit was calling my name!!!

Someone with the early appointment was 30 minutes late, which pushed my schedule off.  I originally had over an hour between scans to eat lunch, but had to rush with less than 30 minutes by the time I was done.  Yes, I was a few minutes late to check into my ECHO, but it worked out perfectly, as they were also running behind.  I had the same tech for this ECHO as my last one, so he remembered my case and was very kind.

The scans are over for another 3-4 months.  Now, we wait for results.

H&P # 11 + Iron

A few times in the past week, I've been told by friends that they admire me for how I deal with cancer, I inspire them to do better, or I do such a great job of living in the moment and being happy through hard times.  I try, I really do, but I have also promised not to sugar coat this journey,  to be real.

Instead of lots of easy, care-free days in the past week, many times, I've looked a lot more like this:  

It's hard to be happy all the time.  It's hard not to cry.  It's so much easier to allow doubt and frustrations and sadness to creep in, letting emotions spill into tears.  In the last few days, I've cried.  A LOT.  

It could be my meds being off, but it's also school starting, kids growing, Facebook reminding me of baby pictures from four years ago, before cancer was on the radar.  It's seeing old friends and watching their children play with mine, even though they've all grown two years older since we've moved.  It's missing people who aren't in my life now as much as they once were.  Nostalgia brings both tears of joy and sadness, when I remember times past, and wish for that simplicity, that blissful ignorance before cancer, before children, before marriage, before I knew how hard "hard" could be, bound by the choking truth that life, for me, will never be carefree.  It's both pleasure and sadness from fond memories, and fear of not having enough years to make as many more as I feel entitled to.  Pressure that fills up my chest and throat when I try not to lose it at time flying by, not knowing how many more "first days of school" I'll be around for, or how few more my boys will actually want me to take their pictures or walk them into their classes.  It's guilt over all the things--am I doing too much, doing not enough, being to hard/too soft, not saying the right things in fear of saying too many things?  It's feeling all the feels at once and still not understanding what, exactly, I'm feeling or why.  

Yes, there have been many reasons for tears, but they don't stay forever.  I'm angry that I have to deal with cancer.  The hard things are never fun, and much of it doesn't feel fair.  However, I am blessed.  I have more good, happy things, more reasons to smile, and more comforts than many people who have ever lived could ever hope for.  Each night when we share our "bests" and "worsts" from the day, I'm still able to find something wonderful, something that made me smile, something that adds to my happiness.  And, I'm reminded that my happiness is found in the sum of all the things in all the days, not just the number of tears in one day.      

And maybe that's the point in all of this: that we can be happy even during the darkest times.  Even through trials, annoyances, questioning, contention, wars, destruction, fear, toil, danger, and all the bad and hard to be found in the world, it may be said that "never was there a happier time among the people." (Alma 50:23).  Life is hard; it tests you to your limits, but there is always something to make  you smile. 

Stephen and I were talking last night about hardships and happiness.  "You can't base happiness on whether or not things are going well," he reminded me.  "You keep on going, remembering that there will always be hard things.  It will probably be after you're gone that I'll speak up even more."  I responded, "Yeah, and people will come right back and say, 'how'd that work out for you?'" (Meaning, how can he be happy?  He did all the things he thought were right and good, and his wife still got cancer and died.)  Without missing one second, he shot right back, "I'll tell them, 'It worked out amazingly. In the 20 [or however many] short years I had with my wife, I had so much joy and so much happiness, more than many people ever get.  And, I'll continue to have more, looking forward to the day I see her again." 

Then my tears meant something.  I think that might have been the most amazing thing he had ever said.  He is right there by my side, completely understanding that he might have to stand alone, much sooner that he is entitled, but even knowing that, he wouldn't choose anyone else, and he's already preparing to love me beyond anything cancer could try to steal away.  Yes, those were tears of happiness, tears of understanding pure love.    

So, even though there have been lots and lots of tears, I keep on going.   Treatments, side effects, fighting, and the unknown.  Surely, even cancer can't steal happiness if I never let it.  

Guess who came to treatment with me today?

I dropped the ball and didn't remember that he doesn't start preschool until next week.  Then, I figured it might be fun to bring him along, so he can see what goes on when I go to the doctor!  He's a hit.  

Today I'm getting iron, in addition to my regularly scheduled treatment of Herceptin and Perjeta.  When he saw that dark substance in the bad, he asked, "what's that?"  When I told him, "Iron," he responded with a look of shock.  "What?  Iron is real?  Is it going to your heart?  Why do you need it?  It's going to make you strong."  After it had finished dripping, he kept asking, "Are you strong now, Mom?  Let me see your muscles!"   

Now I've had my iron, so I'm strong.....and happy.......yet, still reserving the right to cry and feel for the hard parts of all of this.   

Bucket List

I've had a few articles published lately, and I'm on my way to the next step.  That's right,  I have officially signed and sent a contract for A BOOK!  I've been working on this for most of the year, and it's finally feeling real.  

The book will be about suffering and surviving, overcoming challenges, and what can be learned through tough times.  It features my story, in two parts, along with the stories of several others, combined with commentary on the silver linings found during suffering. 

The initial comments from the publisher are quite positive:

"This is a book everyone should read as literally every family has been touched by this horrible disease.  I really enjoyed the Christian references discussing possible reasons and strength, understanding and perseverance.  This is an incredibly well written book." 

That's not a bad first review!  I'm working with another published author, with an "in," so I'm hoping that helps move things along.  Even so, it will still be months before anything is in print.  Stay tuned!  I will post updates as I know them.  I'm hoping to spread the word, and maybe even pay for my treatments for the next year from the sales!    

I thought for sure if I ever published a book, it would be in the realm of education, but it turns out I have plenty to teach through sharing my experiences with cancer.   It feels great to be knocking down the bucket list!  

H&P #10 + Meeting with Dr. F

Nothing like flying home from vacation and waking up the next morning for cancer treatments!  It was a rough week earlier, as I had some kind of bug, which caused diarrhea, vomiting, and major fatigue.  That was before I came home!  I barely had time to get adjusted to being home before I turned around to drop the boys off and head to the clinic.  By now, I've built up a bit of an immunity to Benadryl, but I succumbed to the tired feeling and slept the entire time I had treatment this week.  (That's why I'm a few days late on writing about it!)

I met with Dr. Fleener this time.  I don't always have a specific appointment with her; I just walk back to the treatment area.  She only needs to see me for specific concerns, or when it's time for more scans. (PET and an ECHO. )  We scheduled both for the first week of September, when all the boys are back in school.  I'm hopeful these will both just be routine, as there does not seem to be any symptoms causing a great deal of concern.  Still, I hate having to hold my breath every three-to-four months, hoping and praying that this is not the time it comes back.  I don't have to start another fight so soon.

For now, I live my life and pause every three weeks for maintenance treatment.  

The hardest part of all of this is just not knowing when cancer is coming back, feeling as if I'm living on a volcano, waiting for it to erupt.  As hard as I try not to, with each major life event, I wonder in the back of my head if it's the last time I'll experience that event.  Is this the last family picture I'll be in?  Is this my last summer vacation?  How many more birthdays or anniversaries or holidays will I make?  Will I have enough time to make enough memories that even my youngest will have great memories of me?  

A few weeks ago, I had one of those moments, when all the emotions of just how much of life I'll be missing out on overtook me.  I try not to dwell on the possibility of dying young, leaving my young family without a wife and a mom, but on that day those thoughts creeped in.  I was driving alone; I don't even remember where.  I just know that I was alone.  I was not necessarily pondering on anything in particular, when some sad thought popped in my head.  Even though I don't remember exactly what, it was probably about a baptism, or wedding, or grand baby I might never see.  

"It's not fair!" my inner voice screamed.  "These are thoughts I shouldn't even need to worry about having!  I don't want to worry about not being there to see so many important things in my kids' lives!"

"You'll see them." another voice whispered back.   

At this point, this answer was as if God was speaking straight to my heart.  

"Even if you're not here, you'll be there." (Meaning, I'll be able to be there for the big--and little--moments, even when I'm not present on earth.  I'll get to see them.)

I had to pull the car over to wipe the tears from my eyes. 

"But, they won't have me here.  I may get to witness those important days as an angel guiding over them, but I can't hold them when they cry, or be here on earth to care for them."

"It will be okay."

"But, how can it be okay?  If I'm not there,  it's not okay?  I can take comfort in being able to be with them in spirit, but it's not fair for them to grow up without a mother!"

"It will be okay."

The tears stopped.  As if some part of me finally accepted it all....REALLY accepted it, that no matter how this all turns out, it really will be okay.      

I don't know how it will all be okay, but it will be okay.  That does not mean it won't be hard, or there won't be things that we all miss out on, or that we wouldn't want life to work out differently in a perfect world.  But, in ways that I can't completely plan out, God will make up the difference.    

So, even though I'm not always happy about cancer or treatments or not being able to do all the things I want to do, it will be okay.  And, when I can accept that whatever happens will be okay, I begin to see that my "okay" is actually quite a lot to be grateful for.

One Year Mark

I remember it all:  The call to come in for results...the thought that Dr. O could just give the papers to Stephen at work; it was a pain for me to get childcare and go all the way to his office to be told the scans found hairline fractures....the urgency in which I was fit into the obviously busy schedule....not going into the normal exam room....Dr. O joining me much quicker than before.  I was prepared to hear ideas of how we would be able to get my pain under control.

"The scans revealed hairline fractures in your back, but they also found something more concerning."  (The awful pit in my stomach and the tears and fears overtaking my emotions and spilling out my eyes.)
"There are metastatic lesions in your spine and other bones."
 (Knowing what it meant, but hoping it wasn't the "C" word.)  "What does this mean?"
"Cancer is back."

 I sent a "call me ASAP" text to Stephen; he called within seconds.  (I never have emergencies.)
I explained that I was at Dr. O's office, getting results.
"I was just at work with him.  Why couldn't he tell me then?"
"My cancer is back."

The world slowed down almost to a stop, as if both of us were fighting for the last breath left on earth.

"I'll be right there."
                                                                 ***********

I still don't believe that Cancer is now my life.  When the darkness fell the first time, I was told, "This will be the worst year of your life, but you'll beat it.  You'll get back to living.  You're a fighter."

I fought.  I beat it.

It came back.

Now, cancer is just part of me.   I'm a survivor, but I'm now faced with a lifetime of fighting.  I will continue to beat cancer every day of my life.  Some days are easy, others are less than perfect, and some I just want to sleep through and wake up from what must be a terrible nightmare.  But, every day that I wake up with good health is a day I continue to fight.  

There are stories of heroes in history that inspire us to reach beyond what we once thought possible.  In some ways, my own little world of fighting cancer has been able to reach out to others. I have found great purpose in this trial.  Cancer is terrible;  I don't wish it on anyone, but I have seen how my example of surviving the storm has given light to others.  My story is your story.  Where I discuss cancer, you can fill in your own cross to carry.  Where I see the light in the darkness, you might learn to seek your own silver linings.

One year ago today, my world changed forever.  I will never have freedom from cancer, but I choose to not be in bondage to the disease.  My fight includes bringing courage and gratitude into a world full of doubt and frustration.  If I can help free others from the burden of their own battles, I will have won.  The difficulty of carrying the weight of cancer on my shoulders becomes lighter as I see how I am strengthened to withstand.  I have hope that cancer won't win, as I only allow it to bring me down when I give up faith and refuse to see the blessings in each moment of every day.

H&P #9

Summer is flying by, especially when you keep track by my three-week timeline of treatments.  Nothing much to report today.
Dr. F did prescribe a new drug to try to see if it can give me some relief from my allergic reaction to what we can only assume is in response to my maintenance drugs.  The reaction was especially annoying this cycle.  Here's a reminder of the ugly, itchy, red bumps.

On a positive note, my hair has grown enough that I was able to get some highlights and a haircut!  I also realized it's been awhile since I last posted the photos!

April-May

June-July 3

It's summer, and I'm kicking cancer's butt in shorts and sandals.  Seeing my 4th of July toes reminds me how grateful I am to live in this country and to have the availability of doctors and care that I do.  I am very blessed!

























Because of vacation, I won't be back until August, which will be my last treatment until school starts again!  Slow down, SUMMER!!!!