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.