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 :)