More To Be Done

Since finishing chemo mid-July, we've been enjoying life being a little less crazy.  I've started trying to work my way back to normal, and slowly but surely, my energy is returning.  The blog has been quiet because up until we met with my doctor on Tuesday to find out the results from last week's PET scan, there really wasn't anything to report.

But now I wish I didn't have an update to give.  I'm getting really tired of delivering bad news.

My tumor is not gone.

We don't know what the path forward is yet.  My doctor is sending me for a second opinion, but we have to wait for insurance approvals before we can even make that appointment, which means it's back to the waiting game.

I'm at peace with the situation.  I may not get a say in the hand I've been dealt, but I do get to choose how to play it.  So we will deal with whatever comes next, just like we have in the past.   We'll take things one day at a time.  I'll have bad days and there will be times when everything feels impossible again.  But we'll keep going and we'll make it through.

Do you remember my favorite quote about being braver than we expect? (It's at the top of the blog if you don't.)  I used to view this as a reminder of what I could aspire to; it was about possibility and encouragement and self-improvement.  I was afraid, but there was still hope, because I could be braver.  But after this news, I realized just how much I have grown - now it is a reminder of who I am; it is about achievement and reflection and pride.  I may still be afraid, but now I know:

I am braver.

Six Down

I don't feel much like writing right now, but I wanted to share this short update:

Chemo #6 was last Tuesday, and although the nausea was less intense than in round 5, I'm still having occasional episodes of queasiness (mainly scent-related again).  But that was it - the last round!  We're now back to the part of the game where we don't really know what's happening, so that's a little tough.  But I have a PET scan scheduled for the 13th and we should have a better idea of the future once I see my doctor again afterwards.

Regardless of what comes next, making it to this point is something to celebrate, though I'm not sure it has really sunk in yet.  We've come a long way - I can't believe that it's actually been 5 months already.  I have started to feel a lot better in the last couple days and I'm very excited at the prospect of actually getting to feel good for more than a week.  And I'm sure that I'll be more excited in two weeks when I don't have to go back in for another treatment!

So for now, we'll just try to enjoy a bit of a break.

Five down

We went into cycle #5 on a high.  We had just spent a wonderful, relaxing, much needed few days away at the shore and were feeling rested for the first time in months.  Only two treatments left - the light at the end of the tunnel was starting to appear.

And then I was nauseous again, and it was quite a blow to the spirits to be dealing with something that we thought was under control.

I'd experienced a minor bit of nausea during the fourth infusion, but I hadn't been feeling great overall at that point and after napping for most of the treatment, it went away.  So when I started to feel the same way during the fifth infusion, I figured I would just nap and would feel better shortly.  Not so much.

Thankfully this was nothing like the level of nausea I had during the first treatment.  I could still function and eat and was never close to throwing up, but I was uncomfortably queasy and it lasted the whole day.  I was significantly better the next day but still felt a bit off.  It wasn't until the third or fourth day that I really felt fine again.

On a related note, I've started having significant trouble with some smells making me feel sick.  The worst smell?  The infusion center.  I'm sure it's an association issue, because just thinking about it too much makes me start smelling it and feeling queasy.  Getting through the last treatment could be rough.  There are also some smells around the house that have started getting to me - I've had to change my soap a couple times, and sometimes the dog is too smelly.  Fortunately most things still smell fine, and I can usually combat a bad smell by finding a good one.  But I'm trying not to rely on any one good smell too much because I don't want it to start being associated with bad things too.

My hair has continued to grow, which is annoying.  What didn't fall out initially appears to be incredibly stubborn and doesn't look like it is going anywhere, and I can't tell for sure, but it looks like some of what did fall out might be coming back.  But it is still so patchy that it looks pretty bad if it starts to get any length to it, so we have to keep shaving my head.  The whole no maintenance thing was supposed to be the one perk to losing my hair ...

My energy levels haven't been great.  At this point, it feels like things are a bit more even keel:  my bad days aren't quite as bad, but my good days aren't quite as good either.  My brain just doesn't work right sometimes.  I have been having a lot more trouble sleeping lately.  And it is incredibly hard to balance trying to be active when I do feel well so that I can wear myself out enough to be tired but not wear myself out too much that I can't recover.

The biggest news of late is that we had our appointment with a cancer risk genetic counselor this week.  Although we don't know anything yet, it was a very informative session.  Based on family history and my own experiences, there are a few things she flagged as possibilities.  I don't fit all of the criteria for being high risk for any of them, but taken all together, she is recommending testing and is going to see if our insurance will cover it.  Hopefully yes because I am extremely interested in having this done, but it is not cheap!


One more.  Almost there.

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:

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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.

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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.

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.

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.

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.