Saturday, June 13, 2015

So Much More Than Surviving

Amazingly enough, Relay was already two weeks ago, but what an incredible weekend it was!!

After warily watching the forecast for the weekend oscillate between torrential downpours and sun the week before, Relay morning arrived bright and sunny and stayed that way until everything was packed up to go home the following afternoon.

Our baked goods were delicious.  Our raffles were a success.  Our campsite was crowded with family and friends.  Our hearts (and stomachs) were full.

I am beyond thrilled to tell you that our team raised over $10,000 this year!!  This is more than we raised in the last two years combined ... by a lot.  Achieving that level of fundraising success had never even crossed my mind.  I am just blown away and so thankful for all of your generosity and support.

I think that this year's Relay will always be very special to me.  It was our first year at a new Relay and I have absolutely fallen in love with the community there, but it was more than just that.  Not only did this Relay provide an uplifting break in the middle of my treatment just when I needed it most, but I also had the honor of giving the speech at the Survivor Ceremony.

Although I wrote my speech ahead of time, I did not read it word for word.  So what I shared was close to this:



There are two things that I want you to take away from listening to me this evening:
1.  If you think something is wrong with your body, go to the doctor, because early detection saves lives - quite possibly mine.
2.  Whether you've raised $5,000 or $5, the fact that you are standing here right now makes a difference.

My cancer story began in August of 2012 when I found a lump on my neck.  The first thing I did was Google it.  After being sufficiently freaked out by what I read, the second thing I did was call my doctor.  A couple hours later, I was in his office.

The next few weeks were full of stress, uncertainty, and medical tests.  I had blood work done, an ultrasound, and a biopsy.  Unfortunately, although they could tell me that there was definitely a nodule on my thyroid, they couldn't tell if it was cancerous or not.  I had to have surgery so that they could remove half of my thyroid to find out for sure.

In October of 2012, at the age of 26, I was diagnosed with papillary thyroid cancer.  What followed was a second surgery to remove the rest of my thyroid, a radiation treatment, and an emergency room visit due to the side effects.  It took over a year to get my medication levels right.

The emotional side took even longer to sort out.  I didn't know what to do with this new label of "survivor".  Yes, I knew that I had had cancer and I was still alive, so technically I was a cancer survivor.  But my experience wasn't anything like the picture that comes to mind when you think of a cancer survivor.  I hadn't gone through chemo, I hadn't lost my hair, and I didn't feel very brave, so I didn't feel comfortable calling myself a survivor.  Part of the problem was that it sounded like it was past tense, finished.  But it is never over.  How could I say something so final when I carry this with me for the rest of my life?  The touch of thyroid cancer is never farther away than the medication that I have to take every morning so that my body, now missing a critical organ, will not shut down.  A single label is too small, too finite to truly convey all of this.

Even though I wasn't sure how to feel, I knew that I needed to *do* something.  So I decided to get involved with Relay.  Over the next couple years, I learned about all of the wonderful programs that Relay and the American Cancer Society support.  I met some of the most wonderful, caring people and have formed lasting friendships.  And I learned that survivors come in all shapes and sizes.  I began to understand that survivor means something different to each person, and that it was okay if my definition was a little different too.  I began to be at peace with my whole experience.

Now, I am enough of a realist to know that having already had cancer once at so young an age, it was likely that I would have to face it again at some point in my life.  So there were times, while volunteering with Relay, that I found myself thinking "I wish I had known all of this before.  But at least now, I know where to find these services if I ever need them again some day!"

The thing is - some day was never supposed to come so soon.

At the end of February, just a few months ago, I went to my doctor's office.  I'd had a lingering cold that felt like it was moving into my chest, so I went to get it checked out.  It was a complete shock when an x-ray revealed a mass in my chest.  After more weeks of stress, uncertainty, and medical tests, at the end of March, I was diagnosed with non-Hodgkin lymphoma.

I have now had two cancer diagnoses in just over as many years.

So let me come back to the two points I told you at the beginning.

Point #1:  if you think that something is wrong, go to the doctor.  In both cases, my tumors were very large - about the size of a golf ball for my thyroid and a baseball with my lymphoma.  But in both cases, the cancer had not spread.  In both cases, I was fortunate enough to have been diagnosed early - and the earlier your diagnosis, the better your prognosis.  I could have very easily ignored the lump on my neck that was "probably nothing".  I could have very easily said "Oh, this cold will pass on its own".  My story might have turned out very differently if I hadn't been so proactive about my health.

Point #2:  Regardless of how much money you have raised, what you do here matters.  Each of you has your own reason for being here and for fighting back against cancer.  And I am sure that most of you have a pretty good idea of what that money goes to:  the Road to Recovery program that provides rides to treatment for cancer patients; the Hope Lodge that provides lodging for people who have to travel out of town for treatment; and the Look Good, Feel Better program, that helps women deal with the appearance-related side effects of cancer treatment.  Every amount raised, no matter how small, helps support these programs and more.

But what do these programs really mean to someone with cancer?  Well, a few weeks ago, I was able to attend a Look Good, Feel Better workshop.  I was excited to go, because some days, it is hard to feel good about yourself when the person looking back at you in the mirror doesn't look like you.  And that is the whole idea behind this program - when you look good, you feel better.  So I got a bag full of great makeup and beauty products to use, and I got tips on how to deal with all of the changes that come with chemotherapy:  hair loss, skin changes, weight loss or gain ... or both.  They taught me how to draw my eyebrows back on so I will be prepared if they fall out later.  I am very grateful for this experience, and because of money raised at events like ours, I was able to attend this workshop for free.

But what we do here is not just about the money.  Yes, the funds we raise are critically important to ensure that the programs I just mentioned can continue.  But the simple act of so many people joining together for the same cause is important on its own.  The hope and encouragement that you all provide is immeasurable.  This community has picked me up and supported me in so many ways - in ways that money cannot.  I have been looking forward to this weekend since my treatment began.  This - right here, right now - matters.

My feelings about being a survivor have changed and evolved, and to be honest with you, I'm still not completely sure how I feel about the term.  But I do know one thing:  I don't believe that you can be a survivor on your own.  So thank you all for helping me be one.





I am grateful for the opportunity to share my story - not just at Relay, but through this blog as well.  It  has helped me process and find meaning in my experiences.  It has helped me find my voice and discover a love of writing.  And it has allowed me to grow in ways I never would have guessed.

Something incredible happened the first time I saw the picture above, something I wouldn't have thought possible.


I loved it.


Instead of seeing flaws, instead of finding faults, all I saw was strength.  After everything that I've been through, I am still standing tall.  In that moment, I was incredibly proud of myself.

And that sounds like being a survivor to me.

Saturday, June 6, 2015

Four Down

In a surprising twist, chemo was a go this week with good news on all fronts.

Remember my poor, tired liver?  Well, normal ALT levels are below 56.  Going into the 2nd cycle, mine was ~100.  Going into the 3rd cycle, it was ~220.  Going into the 4th cycle, it was ... 80?!  Way to buck the trend, liver!  So almost back to normal levels - this is excellent, but go figure.

My PET scan also looked good - with only a small section of activity showing, my tumor is mostly gone.  We will recheck with another PET scan after the 6th treatment.

I was also not nearly as exhausted this week as I was last time.  Don't get me wrong - I'm still doing plenty of napping!  But as opposed to last cycle where I was pretty much laid up for 4 days straight, I've actually been able to get up and interact with the world for short periods of time before having to rest again.

That being said, I think it is time for a nap.

Two to go.

Monday, May 18, 2015

Three Down

You know that part towards the end of Evita, after Eva has been waltzing with Che, where she says 
"What is the good of the strongest heart
in a body that's falling apart?
A serious flaw, I hope You know that" ?

I can't tell you the number of times I have sung that to myself over the last few months.


Despite the positivity from my last post, this past week was incredibly difficult.  I started the week tired and it didn't get any better from there.  Treatment # 3 was on Tuesday - I basically slept the entire time at the infusion center and didn't really get off the couch for any extended period of time until Saturday.  I am just worn out at a level I have never experienced before.

The physical fatigue is one thing to handle.  The emotional exhaustion is another.

We got a bit of bad news before treatment - two of my liver enzymes are high, which is a sign that my liver is struggling.  My ALT level was slightly elevated before the second cycle and was even higher this time, and my AST level was high this time as well.  My doctor said that while they weren't high enough to delay this past treatment, we have to keep a close eye on it and might have to push the next treatment back to give my liver time to recover.  I have a PET scan scheduled for the 28th to check our progress, and we will discuss the results from that as well as any adjustments to my treatment schedule at my next visit on the 2nd.  I always knew that the schedule was only tentative, but this still feels like a set back.

Adding to that frustration, I wasn't able to make it to my step-sister-in-law's college graduation this weekend.  And in the next few weeks, there are more life events that I know I will have to miss:  retirement parties, baby showers.  And it's hard to miss out on all of the routine things too - the everyday conversations and shared experiences that I am left out of because I am physically or emotionally not in a state to participate in life outside of my house.

And to top it off, I came to the realization last night that we are probably going to have to postpone our trip to London.

I think that I am running dangerously low on optimism.

It's been a week full of grief.  Of feeling alone and disappointed.  Of trying to come to terms with the planned life that has been taken away - again.  Of trying to adjust expectations - again.  And I can't say that I've made a whole lot of progress, except to recognize that I still have a lot of grieving to do.


Halfway done ... I hope.

Wednesday, May 6, 2015

Bloom Where You Are Planted

There are two reasons for today's post title.

First, the literal reason:



THIS FINALLY HAPPENED!  We have lived in this house for 3 years now, and every time we were going to start tackling the landscaping (the fact that there was none), something else would take priority or some other life event would interfere.  All winter, we were planning that we would get the front of the house planted this spring ... and then it seemed like we would be putting it off yet again.

But after I felt well at the end of the first cycle, I was hopeful that we would still be able to make this work.  I made sure to have my plant list ready so that we could get started as soon as I was feeling well again.  So this past weekend, we took a trip to the nursery on Saturday and picked out 3 fothergillas and 1 viburnum (pictured), 5 paw paws, and 1 sweetbay magnolia.  Then we spent most of Sunday working in the yard and got everything in but the paw paws.  We still have a long way to go, but this is almost more of a symbolic victory at this point, and I am pleased with how it looks.


Second, the metaphorical reason:  I received several beautiful gifts this weekend (thanks Patty and Family Strides!), one of which was a little journal with that phrase on it.  For whatever reason, that is really resonating with me right now.  (Maybe because of the spring planting? I don't know.)  This is not the ground in which I would have chosen to be planted, but I am beginning to embrace it.  There are riches in this soil, despite the rocks.  Granted, this is much easier to say at the moments when I am feeling well as opposed to the moments when I am lying on the floor crying because this feels too hard and too unfair (that was the previous weekend).  But still, I think that I am starting to see how I can bloom not in spite of this, but because of this.


If that wasn't enough positivity for you, I've got more good news.  All of my counts were normal again at my nadir visit last Thursday, so they've decided that I don't need to keep having them.  That means fewer blood draws and fewer appointments that I have to go to, which is a big plus.  It also means that my body is continuing to handle treatment well.

The second round has just been all around better than the first.  I know I only really have two data points now (which makes a straight line!), but it looks like there is a pattern emerging that will hopefully hold (or improve) for the rest of treatment:  week 1 is pretty much a wash, week 2 is okay but tired, and week 3 is mostly normal.  I can handle this.

Round 3 starts on Tuesday.  Almost halfway done.


Friday, April 24, 2015

Two Down

I had intended to post earlier this week, but I have just been too tired.

The good news is that cycle 2 has been much better than cycle 1.

There were several changes to my meds for this round:
1.  I took an Ativan before my appointment
2.  Instead of taking Prednisone in the morning, I received a stronger steroid (Decadron, I think) through IV
3.  They stuck with Kytril, since that seemed to work much better for me - also received through IV
4.  They added in Emend, which is supposed to last for 3 days - also received through IV

I had no trouble with the infusions and only had a teeny bit of queasiness right at bed time and right when I woke up the next morning.

Intellectually, I know that this is a fantastic improvement and that I should be happy with this progress - and I am.

But to be honest with you, even with how well things are going, I was feeling pretty down yesterday.  My hair has almost all fallen out now, with just a few stubborn patches holding on, so it is currently looking kind of terrible.  I am exhausted and a bit foggy.  Some foods are starting to taste weird.  And the gloomy weather was not helping anything.

Today has been better.  I got a good night's sleep and the sun is shining.  I am trying to take it easy and not expect too much of myself, but continually not feeling like yourself is hard.


Four to go.

Monday, April 13, 2015

Hair

... for just this morning right there on her pillow
was the cruelest of any surprise
and she cried when she gathered it all in her hands
the proof that she couldn't deny ...


My hair started falling out this morning.  I cried.  More than once.

This hit me harder than I had expected.  I knew that it was coming and I thought that I was ready.  But it is one thing to talk about losing your hair and it is a completely different thing to be experiencing it.  To see it coming out in my hands as I tried to style my hair this morning was awful, and I was not prepared for how much this upset me.

I feel really good right now physically (pretty much normal, actually), which made this harder to handle.  Even knowing that it would happen, I guess there was a small part of my brain that thought maybe it wouldn't because I was feeling so well.  Starting off the day so emotionally drained was hard.

So this afternoon, I went out and bought a bunch of hats to cheer myself up :)

I will probably cry about this again as it keeps falling out.  I will probably cry whenever I just cut the rest of it off.  I will probably cry about being bald at least once.

But each time, I will pick myself up.  Or my family will pick me up.  Or my friends will.

And I will keep going.
And I will get through it.
Because to me, that is just what you do.


Friday, April 10, 2015

A Pretty High Low Point

I had my first nadir visit yesterday.  For those of you (like me) who had never heard this term before, it means low point.  At this time, approximately 10 days after chemo, blood counts (WBC, platelets) are expected to be at their lowest.  If they fall too low, there starts to be concern about increased risk of infection, bleeding, etc., and there may be extra steps you need to take, so the main reason for this visit is to check on that.

Good news - my levels were normal!

In addition to getting blood work done, this visit was a chance to discuss any symptoms, issues, or questions I've had.  I had several items on my list to go over, but all things considered, I think I've been doing really well over the past week.  I have certainly been tired, so there have been lots of naps.  My appetite is not quite normal, but I am eating fine.  I've been achy, but haven't had a fever.  I've had a perpetual dry, slightly bloody nose, but nothing that is cause for concern.  And my energy comes and goes pretty unpredictably, but I've had a decent amount of it.

Wednesday was rough - it was the first day off of prednisone, and it was absolutely like hitting a wall.  I was completely exhausted, and even napping seemed to make me more tired.  Yesterday was an improvement (naps actually helped) and today was definitely better (0 naps taken!).

The most frustrating thing has been the brain fog.  It was like my brain was just not processing things correctly.  I would get distracted very easily, and simple things could take a long time to make sense.  I'd heard enough about chemo brain to expect this at some point, but I was really hoping it wouldn't show up so soon!  Fortunately, it has cleared up considerably in the last couple days, and I feel like I am mostly back to normal.

One thing we need to keep an eye on is my weight.  As of my visit yesterday, I had lost 7 lbs in the last 9 days.  Normally I would not mind at all, but we definitely don't need me losing strength and making this whole process harder to get through.  One of the things I was told before starting was to focus on protein and calories, and I have been trying to do that.  I feel like I have just been eating all the time, but it looks like it's time to start loading up on the most calorie-dense foods I can!  I am a volume eater, so this is totally opposite my normal eating strategy ... which means we don't necessarily have the best foods in the house to fulfill this need.  So in an effort to get more calories in me, my very wonderful husband went out and bought me double chocolate muffins, chocolate and cinnamon sugar donuts, and almond horns.  And we had pasta tonight.  And we're having pizza tomorrow.  I guess there are some perks to this after all!

The most important discussion piece from my appointment yesterday was around changing up my meds for the next cycle.  Instead of Zofran and Compazine, which seemed to do nothing, they are looking at keeping me on the Kytril and adding in either Emend or Aloxi.  I had come across Emend while doing some research on nausea medications and it sounded like a good candidate to me:  Kytril is supposed to work by blocking the nausea/vomiting signal from the stomach, while Emend is supposed to block the signal from the brain and is used in conjunction with a drug like Kytril.  They have to check what my insurance will cover, but whatever I get should be better than what I got the first round.  In addition to trying different meds, they also scheduled me for additional hydration the day after chemo just in case.

We are not quite 2 weeks in, and I am both exhausted and optimistic.  It's hard to think about this going on for 16 more weeks, but on the other hand, we've already learned a lot that should help the remaining cycles go more smoothly.  I know to be prepared for the mental fog now.  I can anticipate the prednisone crash.  We'll stock up on different foods than normal.  If we can get the medications right and avoid the nausea/vomiting, I think we'll be in good shape.

Now I am hoping for a good week full of energy next week before we start again.