DONE

I had my final radiation appointment last Monday, which means that I'm done treatment.

Let that sink in for a moment.

I'M DONE!!!!

I saw my oncologist on Tuesday to find out about follow-up.  I'll be getting another PET scan, but that won't be until February to give my body a chance to recover.  I get to have my port removed next Tuesday.  The only thing I have between then and February is a follow-up office visit with my radiation oncologist mid-December.

I'm relieved and I'm excited.  Life can start to move forward again.  And we continue to celebrate the small as well as the large - things like going to get a real haircut yesterday, because that means I have enough hair again for that to be needed!

The most important thing for the next few weeks is to enjoy the holidays - doctor's orders.  I think I can manage that :)

Tattoos and Timelines

I got my first tattoo last week! (And also my second and third!)  But let's rewind for a minute.

After meeting with the radiation oncologist the week prior, we are feeling pretty good about things.  We learned that the protocol is relatively short (every weekday for 4 weeks), the doses they use for lymphoma are lower than for other cancers (20-40 gray versus 60-80), and the expected side effects really are minimal.  After the fun of chemo and having been preparing myself for a SCT, this sounds like a walk in the park!

In order to get ready, I had to get a scan done so that the doctors and physicists can figure out exactly how they are treating me.  They map out the exact location of where the tumor was, where the remainder is, and where all my organs are.  They want to treat an area somewhat bigger than what is left while still staying as far away from everything else as possible.  Based on the scans, they do a bunch of calculations to figure out organ volumes and how much scatter can be tolerated as well as determine exactly how they want to direct the radiation.  Once they've gotten that all figured out, they do another scan to double check and as long as everything looks right, you're good to start treatment.

In order for this all to work, you have to be positioned EXACTLY the same each time you get on the machine.  Which means they need some way to get you all lined up again.  Which means tattoos - 3 in my case:  one on each side of my chest and one in the middle.

Now let's play find the tattoo:

I knew that they would be small, but I didn't realize just how tiny they would be!  (In case you weren't sure, it's the black dot on the bottom that's way smaller than my moles/freckles.)  Although I mostly don't notice it, when I do it's just kind of weird - it looks like I poked myself with a pen and that it should just wash off ... but it obviously doesn't.

So I've had my initial scan and my tattooing and I go back on Thursday for my "dry run".  Assuming it all goes well, I'll start radiation on Tuesday the 13th.

And for all you forward-looking people:  that means we'll be done before Thanksgiving!

Sweet Relief

For anyone who doesn't want to read through everything that happened in the last month, let me sum up:  a biopsy of the remainder of my tumor came back clean and I'll be starting radiation soon.


If you're happy with that summary, see you next post.  If you want the details of how we got to this point and why that is incredibly good news, keep reading:

When we last left our heroine, she had just learned from her doctor that more chemo, radiation, or a stem cell transplant were all on the table for treatment options, but that she needed to get a second opinion on how to proceed.

After initially being told that it might take anywhere from 1-4 weeks to get approval for the second opinion consult, it was only a little over a week before I heard from my office that my insurance had approved the request and the appointment was scheduled.  Shortly after that, I got a call from someone at the new office who insisted that they were out of network for my insurance and the appointment wouldn't be covered.  I freaked out slightly, went to my office, and sat down with the scheduler there while she called back to get things straightened out.  I ultimately got a call from the director at the new office apologizing for the confusion, promising that everything was fine, and giving me her contact information in case there were any other issues.

The doctor we were going to see was the director of a bone marrow transplant program, so I went into this assuming that I most likely needed a stem cell transplant but my doctor just wanted to make sure.  So I had read a bunch about SCTs - what the procedure would entail, what the side effects would be ... not pleasant.  But I was pretty sure this was in my future and I would obviously do whatever was necessary.  However, when we saw her the following week, we learned that she could not make any recommendations about treatment course without a biopsy.  Sometimes you can get a false positive on a PET scan from cells that are dying, so she needed to look to make sure she knew what we were dealing with.  This didn't seem that likely, given that my scans after 3 cycles and after 6 cycles looked essentially the same, but we had to make sure.

The biopsy was scheduled for the end of the following week.  Having gone through this once before, I figured this was no big deal, but things didn't go as well this time.  First, the procedure was in the afternoon and the doctor ended up being almost 2 hours late.  Not having been allowed to eat or drink after midnight the night before, I was getting a bit hangry at that point.  Second, after the doctor took the last sample, I started to get a shooting pain in my ribs that ran from the front of my chest around the bottom of my ribs into my back.  It hurt to breathe, it hurt to move, and the pain was intense enough to make me cry.  They sent me for a chest x-ray but everything looked normal - no punctured lung here.  The doctor's thought was that the nerves that run that path were irritated from the biopsy and that it would feel better pretty quickly.  They gave me some pain meds and by the next morning, it was completely fine.  I was still sore and slightly uncomfortable at the site of the biopsy for the next day, but it was a manageable soreness.

A little over a week more of waiting brings us up to yesterday, when my doctor walked into my appointment with a huge grin on his face and said that he had really good news for us.  The biopsy showed no sign of active disease and I just need radiation.  I cried.  There was hugging.  It was a good day.

I have an appointment with the radiation oncologist on Thursday to find out more about the timeline, but even the worst extreme of radiation is better than the best extreme of a stem cell transplant.  I am immensely relieved and am hopeful that I'll get through this next phase without feeling too terrible.  And it's now possible that I might be done treatment before Thanksgiving - what a wonderful holiday gift that would be!

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:

---

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.

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.

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.

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.

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.

Relay For Life

As many of you know, I got involved with Relay For Life after my thyroid cancer diagnosis 2.5 years ago.  At that time, I didn't really know that much about Relay - I'd heard good things from friends who had participated previously, and it seemed like a good thing to do.  Now that I know more about what Relay is and what it does, I am so glad that I got involved.  And after my second cancer diagnosis in just over as many years, the cause is even more important to me now, and I wanted to take some time to let you know exactly why:

The event itself:
Relay is a 24-hour walk-a-thon to raise money for the American Cancer Society.  Teams of people camp around a track and members of each team take turns walking the track.  People decorate their campsites based on the event's theme, and there are food, games, raffles, and entertainment.  In addition to the awesome fun of one big party, there are more somber, serious moments.  The survivor's lap celebrates anyone who has had to hear the terrible words "You have cancer."  The luminaria ceremony is a beautiful time to remember those we have lost to cancer, to honor people who have fought in the past, and support those who continue to fight.  And the fight back ceremony helps people understand what they can do in the fight against cancer.  All in all, it is an inspiring, one-of-a-kind event.

The programs it supports:
Here is an infographic showing what money raised by Relay For Life is used for.

One program that they don't call out here is Look Good, Feel Better.  This program helps women deal with the appearance-related side effects of cancer treatment, and I am signed up to attend this program in May.  In this workshop, I will get skin and nail care tips, advice on dealing with hair loss, a makeup lesson, and a cosmetic kit with instruction books.  And because of the money raised by events like Relay For Life, I will get to attend this workshop for free.  

The people who participate:
I have met some of the most wonderful, kindhearted people at Relay.  I count my staff partner as one of my dear friends.  We are participating in a different Relay this year than the past two years, and the community there has welcomed me with open arms.  So many of these people have sent me notes of encouragement and offers of help over the last few weeks, and it truly touches my heart.



How you can help:
This year, my team decided to step up to the plate and participate in a fundraising challenge called March Mayhem (can you guess what it's modeled after?!).  After having no idea how well we would do, WE MADE IT TO THE CHAMPIONSHIP ROUND!!  The final round runs until 11:59 PM on Sunday, and we are really hoping to win!  Not only would we get bragging rights (hugely important), but the prize for winning is determined by the team who wins.  Since I'll be in the middle of chemo for our event, getting to pick a prize to make Relay a little more comfortable for our team would be amazing.

Lots of my readers have been extremely generous in the past, and I know that many of you have already given a donation this year.  If you have not, I would ask you to consider going to http://main.acsevents.org/goto/etmerola and making a donation this weekend. There is no amount too small to make a difference.  Thank you so much for all of your love and support!

One Down, Five To Go

We made it through the treatment days of cycle 1.  We were about as prepared as we could be, but unfortunately, things did not go as well as we had hoped.

We were equipped with Prednisone, Zofran, Compazine, Ativan, and EMLA cream.  I took the prednisone and applied the EMLA cream Tuesday morning as directed.  We went to see my doctor for the pre-chemo appointment.  My heart scan and bone marrow biopsy were both fine.  With all of the data in hand, they could now say that my cancer is stage II.  With no additional questions to ask at this point, we got sent downstairs to the infusion center to start treatment.

For the first cycle, the treatment is split in two, so Tuesday was adriamycin, vincristine, and cytoxan.  Port access was super easy and I had no real problems with the infusions.  I did experience a completely normal but very weird feeling side effect from the cytoxan - it was like getting injected with a head cold.  Over the span of about 5 minutes, my sinuses started to tingle, my eyes started to water, my nose started to run, and I started to sneeze.  They gave me tylenol and it didn't last very long, but it was strange.  Overall, we left feeling pretty good.  I was quite hungry when we got home, so I ate leftover chinese food for lunch (and I regret this decision) then laid down for a nap since I was getting tired.  I woke up feeling terrible.  Despite throwing every drug they had given me at my system, I spent the rest of the afternoon feeling terribly nauseous.  And then I spent the evening throwing up.  Fun times.

After finally managing a little sleep, I called my doctor's office Wednesday morning to let them know about the vomiting and that the Zofran and Compazine weren't helping at all.  I was seeing slight relief from the Ativan, so they decided to continue with the Ativan but switch over to Kytril.  I couldn't take my prednisone in the morning since I couldn't keep anything down, so when I got in on Wednesday, they started me off with saline, Kytril, and steroids in the IV.  I started to feel better and was able to get in a nice nap.

Now, on to the Rituxan.  There is the highest risk for adverse reactions the first time they give Rituxan, so they do a very slow infusion separate from the other drugs.  If tolerated well, it gets combined in the next cycles.  Good news here is that I didn't seem to have any issues with it.  I also got my Neulasta shot yesterday, which should help keep my white blood cell counts up.  The main side effect there is bone pain, but the prednisone should help with that.  And apparently taking a claritin and an aleve helps as well - whatever works.

Last night was better - I ate somewhat of a real dinner and got a solid 4.5 hours of sleep before waking up uncomfortable and slightly nauseous.  Only one real bout of vomiting before my stomach seemed to settle.  I managed a breakfast of applesause and toast and kept the prednisone down.  Because of all the issues I had been having, they wanted me to come back in for hydration today.  So another ~2 hour session getting saline pumped into me, accompanied by a brief nap.  Not too bad.  I've managed to get a bit more food in me this evening, and am feeling okay, albeit very tired.

And now we get some time off - yes!

So even though we had hoped for a smoother first treatment, here are my highlights:

Positive #1:  the port has been worth it already.  Not only is it super easy for them to access, but both of my arms are free for reading, eating, going to the bathroom, etc.  Little things like adjusting yourself in the chair are much easier when your IV is in your chest, not your arm.  Plus, trying to get an IV in when you are dehydrated is never fun, so we didn't have to deal with that.

Positive #2:  my medical team is great.  They were quick to change course when things weren't working for me and have seemed to identify a much better option.  The nurses in the infusion center are just fantastic - even the one less-friendly one is still quite nice.  Mary is my favorite - she helped with my bone marrow biopsy, so I already knew her a little bit, and she has been taking such good care of me.  

Positive #3:  the kindness from friends and family.  I have been getting notes of support from across the world.  Beautiful flowers and delicious candy have shown up at my door.  Pictures of people sporting awesome new short hairdos are coming across my Facebook feed.  I feel incredibly loved.

Positive #4:  the kindness of total strangers.  I have already received not one but two care bags while in the infusion center, full of goodies like a cowl scarf, a hat, a blanket, a rice heating pad, hand sanitizer, tissues, candies, and more.  These bags are filled by people who have been patients in the past, or the children of patients, or local charity groups.  Yesterday, a man came through the unit playing guitar.  And there was a super sweet therapy dog who visited as well.  All these things have absolutely made me smile.

Positive #5:  we can get through this.  This was rough - no doubt about it, and we still don't now how my body will hold up to this over the weeks.  But we've got better meds for the nausea now, and hopefully any fatigue and aches will be minor.  If not, I'll just get really good at napping again :)

A Busy Week

That might be a bit of an understatement.  This was one heck of a week.

Monday:  Fertility Fail

I guess not every appointment can be stellar, but this one was just particularly bad.  The first 30 minutes seemed fine - we went through all the normal intake measures, and then the nurse explained that with the treatment protocol we would be following, there would be a slightly increased risk of early menopause afterwards.  Since I am still very young, this isn't an issue we would have to be terribly concerned about right away, but she still walked us through the options for freezing eggs in case we were interested.  We were thinking that we probably wouldn't want to do anything since it was a low risk scenario and were feeling pretty good about this all until she said something about treating Hodgkin lymphoma.  Here's how the exchange went:
Me:  No, I have non-Hodgkin lymphoma.
Nurse:  *looks at me.  looks at computer.  looks back at me*  What?  My notes say Hodgkin lymphoma.
Me:  That's not right.
Nurse:  *looks at computer again*  What was your diagnosis?
Me:  Diffuse large b-cell lymphoma.  Non-Hodgkin.
Nurse:  *still looking at computer*  I need to go talk to the doctor.

So yeah.  Somehow, they had the completely wrong diagnosis and treatment plan in their notes.  After a hurried discussion with the doctor, the nurse comes back to tell us that there isn't enough data about the effects of the treatment protocol I am *actually* getting on fertility to really recommend anything one way or another (most people diagnosed with this are much older, so fertility isn't an issue for them).  Two of the drugs in my protocol are "more likely" to cause problems, and two are "less likely".  

We have decided that we are just going to see what happens.  We were leaning this way anyway, and there just isn't enough information to prompt us to act.  Plus, even if we were interested, we do not want to postpone treatment long enough to go through freezing eggs (the process takes an absolute minimum of 11 days, but when you factor in pre-approvals and scheduling, it's probably more realistically 3 weeks).  All we decided to do was gather some data:  they did some tests to measure my baseline fertility, and then we will recheck after treatment.  Even though it is a gamble, the one thing that we do know is that age is on our side.  As much as it sucks to be dealing with all of this so young, being young should help.  So right now, we are taking the "whatever will be, will be" approach.

And are not recommending this clinic.

Tuesday:  Port ... on the starboard side?!

For whatever reason, I was pretty sure that my doctor said the port would be put in on the left side of my chest.  I made a joke later about how that made sense, because if you put it on the right, you'd have to call it a starboard.  Turns out that it does go in on the right unless there's an issue with the vein on that side.  So ... everything went well with my starboard insertion ;)

The nurses loved me - apparently I had a little smile on my face for the whole procedure.  One of the nurses said that I should be the poster child for sedation.  Totally fine by me, since I'll take sedation over general anesthesia any day!

After having a harder recovery from the biopsy than advertised, I expected to have more pain from the port right away.  The next day was actually not bad at all!  The most uncomfortable part is where the catheter runs over my collar bone.  I am actually more sore today than I was on Wednesday, and I think that I have probably been over doing it.  Fortunately, it is finally the weekend and I will be able to rest up.

Wednesday:  #shorthairdontcare
Since I will be losing my hair, I wanted to cut it off before it started to fall out. 

I have never cut my hair this short before - the shortest I have ever gone is chin length.  Plus, I had most recently been growing it out, so this was a pretty drastic change.  I ended up with about 10" to donate to Pantene's Beautiful Lengths, the partner program with the American Cancer Society that provides wigs for women with cancer.  I am still getting used to the new style and the lack of hair.  In case anyone was curious, phantom ponytail syndrome is a real thing.  But I am actually loving the change!  I think it is cute and fun and I never would have tried it on my own (thanks for the moral support, e!).

Thursday AM:  We can be taught

I know I said it before, but I'm going to say it again:  I love my medical team!  We had our teach session with my nurse, and it was really good.  We covered the major side effects (nausea, constipation, aches, mouth sores, changes in tastes/appetite) and what we can do to combat them.  We talked about the things that I need to avoid (alcohol, getting pregnant), the things that I can still do (pretty much everything else, assuming I feel up to it), and the things we need to watch out for (fever, shortness of breath, signs of infection around the port).

She was appropriately appalled about how poorly the fertility visit went.  She was also pleased with our current habits of drinking tons of water and eating frequent snacks and meals, and I think she was somewhat impressed with the questions we had and how prepared we were.

We got lots of handouts, reference materials, and resources.  We also walked out with multiple different prescriptions to have on hand in case I need them.  I am now feeling fairly optimistic about how things will go.

Thursday PM:  Nerd Alert
The last thing on tap for the week was the muga scan to look at my heart.  As much as I dislike having to have all these tests done, I also find them very fascinating.  This test looks at how well your heart is pumping by measuring your ejection fraction (how much blood is pumped out).  Being the nerd that I am, I had to ask the nurse how it works.  For all you other nerds out there, first they give you an injection of sodium pyrophosphate, which binds to your red blood cells.  About 30 minutes later, you get an injection of a radioactive tracer (this time, it's technetium!), which binds to the pyrophosphate.  They can then image the blood moving in and out of your heart.  So if you've been keeping score at home, I've now had radioactive iodine, glucose, and technetium.  No results from this test yet - we should get those at our appointment on Tuesday.


Friday-Monday:  Rest
Four days in a row without an appointment?  No pokes, prods, or tests until Tuesday?  What is this?!

Much needed, that's what it is.

Just The Facts, Please

Disclaimer:  everything in this post is accurate to the best of my understanding.  We've gotten a lot of information thrown at us in the last week, and I am not an expert in this field.  I may not have all the details quite right at this point, but hopefully close enough.  I am also writing under the assumption that will I tolerate the medications well and that the treatment will be effective.  So here we go!


I have Diffuse Large B-Cell Lymphoma (DLBCL), which is the most common type of non-Hodgkin lymphoma.  Although it typically presents in much older people, there is a sub-type that presents in young women in their chest.  It is very treatable, but it is also aggressive.

When my tumor was first measured, it was 8.5 x 9.5 x 7 cm - for all you sports fans out there, that is bigger than a baseball.  It is large enough that it is causing me pain, but vicoprofen is helping with that.

The best news that we've received so far is that my PET scan was clear (except for the mass in my chest, obviously).  We are waiting on the results of a bone marrow biopsy just to make certain, but that is expected to come back clean as well.

We had all of my scans and reports sent out for a second opinion, although we don't expect anything to change.  Apparently, I am pretty much a textbook case, but it never hurts to have someone else look.

I am scheduled to start chemotherapy on March 31st following the R-CHOP protocol (rituxan, cytoxan, adriamycin, vincristine, prednisone).  We are looking at 6 cycles of 1 dose every 3 weeks, so 18 weeks total.  After each treatment, I will need to get a Neulasta shot to keep my white blood cell counts up and lower my risk of infection.  If my red blood cell counts drop too low, I may have to get a transfusion.  I will lose my hair, and there are lots of possible side effects, but they should only be short term issues.  My oncologist doesn't think that radiation will be necessary, so we will be done mid-July.

Things that have to happen before then:
- Port insertion:  I will need frequent blood draws and IVs over the next few months, and all that wear is hard on the veins.  More importantly, some of these drugs can cause serious tissue damage if it is not injected into the vein properly.  A port addresses both of those issues, so I'm getting one put in next week.
- Muga scan: adriamycin can be hard on the heart.  They need to check my heart function before hand to make sure there isn't anything extra they need to monitor.
- Fertility counseling:  in general, there is a risk of loss of fertility with chemo.  My oncologist does not think we will have an issue, but we are meeting with a fertility specialist to discuss our options.
- Teach with my nurse:  we have an appointment to go over all of this information again and more with my nurse.  We'll get more information about things to watch for and things to avoid, and get another chance to ask any questions we've come up with by then.

One more thing that we discussed, which doesn't need to happen before starting chemo, is that we should see a genetic counselor.  When you combine the fact that I am 28 and have already had two malignancies with the cancer history in my family, you have a very strong case for seeing a genetic counselor and doing some further investigation.  My oncologist recommended it, though if he hadn't, I would have brought it up.  We still have to get this scheduled.



If that wasn't enough information for you, there is a good lymphoma resource available from the American Cancer Society (http://www.cancer.org/cancer/non-hodgkinlymphoma/).   And for anyone who wants to read more about the drugs in my treatment plan, you can look them up at  http://chemocare.com/chemotherapy/drug-info.

Far Too Soon

When I wrote my farewell post just a few months ago, I knew that there would likely be a day when I would need to dust off the blog and write again.  I just never expected that day would come so soon.

A little over three weeks ago, I went to the doctor's office about a lingering cold that felt like it was moving into my chest.  Expecting to be in and out quickly, it was a complete shock when a chest x-ray revealed a mass on my lung.  After a CT scan, an appointment with a cardiothoracic surgeon, a biopsy, and several emotional ups and downs, we know what we are dealing with.


I have lymphoma.


So unfortunately, the blog is back in business.

I've got a lot of information to process and share, and will hopefully get a couple posts up in the next few days.  This treatment will be completely different than what we experienced with my thyroid, and there's a lot that has to be done to prepare.

But I am ready.

And I will beat this.


Stay tuned.