#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

Happy new year everyone!

First and foremost: Santa has already made good on my request… I have a head of hair, new eyelashes and new brows growing in!  I look less like an alien (just less, right brothers?!); and also less “sick.”  My hair grows so slow, and I should know… I stare at it a lot in the bathroom mirror willing it to be long again.  I shall just have to see what Miss Anne Hathaway does to hers as she grows it out since she is a few inches ahead of me. So trendy, the styles to come!

I also found another famous twin with my hair style and glasses… Christoph Waltz from Django promoting his movie on Live with Kelly and Michael!

I got a new tattoo (my second real one… it’s a lot more common 1) “these days”, and 2) in Hawaii where everyone runs around half-naked and covered in colorful, usually meaningful, art work).  Mine is a key (to Sean’s heart… he has a locked up heart tattoo) with a whale tail (a Hawaiian humpback of course!) surrounded by a pink ribbon.  It’s on my wrist where I can cover it for work.  But if I don’t have to, I leave it out.  I’ve gone back to work on the boats and between the tattoo and the new hair, I have had some questions from some very curious women (so far it’s always been women, the observant sisterhood they tend to be).  I had someone outright ask, “What kind of cancer?” and later another woman said, “Ah, I saw your tattoo…” and I even got, “So, what’s the story behind your hair?”

All of these questions are just fine by me because isn’t this cancer something we can all relate to and should be talking about more?  I find a lot of women that ask have either had some kind of cancer themselves or have been a care-taker.  The woman that asked about my tattoo was on the boat for a photo safari with her thirteen year old son who had been battling leukemia–mainly via chemo–for 3 and 1/2 years.  He got the clean bill of health blessing and so his family brought him to Maui for his first real vacation since he’s been diagnosed.  I may meet thousands of people in my line of work (tourism) and everyone has a story.  It’s what we’re here for, this living thing!

I completed radiation in mid-December and have been dealing with the after-effects of that.  Basically, imagine the worst sunburn you’ve ever had, on the softer skin of, say, your armpit.  Now imagine sitting in the sun all day for five straight days after that without wearing sunscreen.  That’s kind of how it works, or at least you can imagine how skin looks and feels after that!  The actual radiation zaps are quick and invisible; much of the redness, irritation and itchiness comes later.  Mine was deemed red enough to warrant a prescription for burn cream.  I hug with my left arm only these days.  And it is healing and fading.

I mentioned earlier that I am back to work, I am.  I also juggle unemployment insurance and work, at least through the end of December.  I started back at the Ritz-Carlton Kapalua as a naturalist at the Ambassadors of the Environment Program (tomorrow is my first “big” day) and have been nannying some.  I hope to be back full time to work in January, spread between my multiple jobs; and remembering to take days off.  I do function best with my calendar in hand and staying busy.

Sean and I are starting to think about an official vacation in May or June or July.  I haven’t been “home” to Massachusetts and New Hampshire in three years and I’ve never been to Chicago (where he is from).  Ah, it sounds so nice.  Even though we live in paradise–Maui–we still need to take vacations!

Chemo continues on through August, once every three weeks for a light dose of “easy stuff.”  I also have in my possession the drug Tamoxifen.  A drug that I have yet to start since it will give me the lovely side effects of hot flashes, night sweats, and insomnia and can be most difficult for the first three months.  My goal is just that: make it through the first three months and then reassess.  Ultimately, I need to take it for five years (five years of hot flashes starting at age 29?  Tell me, ladies, is that fair?!  I would still not, then, be excused from hot flashes later in life; unfortunately, there’s no “quota” that I can finish early!).  Research shows that 2 years of this drug is great for cancer-free survival; 5 years is awesome; and ten years is no different survivorship-wise than five.  I’ll take five over ten any day!

I’m also, technically, “cured.”  I’m set free from the majority of treatment and on to monitoring and life.  I will get a blood test soon to make sure my body is bouncing back from chemo and radiation.  And more tests eventually to keep an eye on things, making sure those little cancer cells don’t pop up somewhere new.

Most importantly, Sean and I celebrated our engagement at a party thrown by our awesome friends, Ashleigh and Thomas and Gene and Leigh.  We had so many wonderful people come and share in delicious food, lots of wine and say such beautiful things.  It was an emotional time but probably one of those nights that will stand out for the rest of my life, not just because of the significance of the event but because after all I and we have been through, life still felt “normal,” and normal in the best sense that word can be used: life was moving onward and upward with hundreds of hands holding us and pushing us up.

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.

#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

I’ve been waiting and waiting for something to happen to break up the monotony of the chemo and cry cycle.  What better time to finally write then right after the Stand Up to Cancer telethon.  I mean, when there’s the cutest spunkiest five year old ever dealing with brain cancer, how can I complain?!

Don’t get me wrong, everything about cancer sucks big time.  Chemo has been going as well as can be expected but the hot flashes and insomnia are regular events.  Sleeping pills and pools help that.  It’s more the cyclical what-am-I-going-to-do that really drives me crazy.  I’m restless but can’t seem to figure out how to go back to work when I have the demands of radiation looming in front of me.  I want to be cool and at the beach but have to be wary of the sun and can’t seem to find the motivation to do any one thing.  I just run circles in my brain talking myself in and out of things and end up with a non-productive day!

Sometimes I don’t write because I don’t want to let all the hopeful folks down.  Then Sean reminded me that some people are reading this because they too are experiencing the same shit, and perhaps they just want to read and say, ah, yes, me too!

I’ve been really angry lately that cancer has upset my life’s forward momentum.  I feel stagnant; there’s nothing I’m currently involved in that is enriching my life.  Sure, Sean and Scupper, family and friends enrich my life.  But that isn’t enough for a well-rounded, full life.  Everyone keeps reminding me that I need to just focus on my health and getting better for right now and then I can add on from there.

But it’s hard to just focus on my health.  It’s hard to be tired and not really know if it’s from chemo or if it’s from the fact that I went from working 50+ hours per week at three different jobs to watching TV and being lazy, waiting for my body to process chemicals.

And then I feel like I’m saying the same thing in every blog!  How do I get beyond this restlessness and change the circumstances?  What is the right thing to do?  Go back to work?  Apply for long-term disability?  I keep waiting for the right thing to make itself clear but nothing is coming in.

Write a book you say?  Look how little I’ve been writing a blog; it appears that I do not have the motivation for even this right now.

I go to chemo every Monday and honestly that is the only time I feel like I am accomplishing anything.  My blood work has been great; I asked if we go make the doses more frequent so I can get through them faster (no dice).  Six more weekly doses and 12 more every 3 weeks.

I started swimming laps at the local pool last week.  But I struck out today because the pool is closed until the afternoon.  To most people, you say well, go later or go tomorrow and I’m sure I will.  But from my view, I’m finally committing to something and the universe gave me a big fat  for it!

Am I really supposed to sit on the couch all day??

Physically, 90% of the time I feel fine and good even.  I’m on antibiotics for a sinus infection, which means stay out of the sun (for two more days).  My hormones are all over the place and I can’t seem to figure out if they are from the chemo (obviously, the Doctors have said yes, chemo does change hormone levels big time) or I’m just losing my mind.  Sean deserves sainthood for his patience and listening!

I know I know, I said “how can I complain” and then I showed you how.  I suppose you could say I’m still just telling you how how it is.  Sure, there are people who have it worse than I and it’s incredibly unfair when a child has cancer but all I can speak for is myself.  And for me, it royally sucks every day to live with this “disease.”  The best I can do is to distract myself from thinking about it every moment of every day.  And so far my daily distractions are watering the garden, petting the dog, talking to Sean, meals, dishes, cable TV, occasional outings to the grocery store, Jamba juice, the pool and the dog park.

When Sean is off work, we go on little adventures: La Perouse with Ash and Tom, meeting Steven Tyler outside his house in Makena, Hana.  You know, the usual.

It’s working, time is passing.  But is it enough?

October 15 is my last weekly dose with Taxol.  Soon after that, my hair will start to grow back and hopefully the insomnia and hot flashes will ebb away and disappear.  It’s a lot closer now than it was 3 months ago.  I’m just trying to focus on getting to that date so I can cross Taxol off the list and move on to the next part of treatment.

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.

#NerdsUnite: Pursue with Courage (one nerd's journey through chemo & cancer)

<editorsnote> Nerds, meet my buddy Serena. She was one of my only friends growing up as we were play buddies at the lake in NH and I found out via Facebook while I was en route to a conference that Serena has cancer. She is here today to talk about her side of things and the journey this disease is taking her on. I only have one more thing left to say ... HIT IT SERENA!! </editorsnote>

#TalkNerdyToMeLover's Serena Neff

Aloha Team!

Round 4 in phase one is done on the chemo front!  Ah, that means that I am done with the toughest drugs and in a few weeks I will start a new pair of drugs, which should have less side effects.  Phew.

First and foremost, thank you to those of you that donated to the Ocean Institute.  It means a lot to me that you took the initiative to do it.  If anyone met any obstacles along the way–couldn’t get through, phone calls not returned, busy with life–I am providing the simple click, super easy method website link: (click here)

Just make sure that in the “comments,” “name recognition,” and “name opportunity” you make it abundantly clear that this donation is noted for Serena Neff and/or The Instructor Fund.

Back to all the side effects and chemo life…

The first dose was the hardest because I didn’t know what to expect but this last one seems to be going pretty well; I’m mainly just tired.

My hair, even in it’s shaved down buzzer level one mode (I imagine the gentlemen readers understand what this means; ladies, 1/4 inch long hair), is still hanging in there in many places but I shed more every day.  I’m not really into the shave down to bald thing; my hair can abandon ship as it chooses.  Though, I must say, at times I miss having hair.  Luckily, it’s summer and it’s hot and in about three months it should start growing back in!  Plus, I have a sweet collection of hats, scarves and head wear to work through over the next few months!  Mahalo to those that contributed 

Hair part 2: Yes, you are correct, I do not have to shave my legs or arm pits because hair does not grow.  I’m saving money on razors and haircuts!  And my eyebrows and eyelashes are still in tact!

I have had a few mouth sores which is gross but they don’t last long.  Mostly the immune system crash out translates to me sleeping like a teenager.  In bed by 9pm and up at 8am.  I can work with that.

The first few days after an injection, I’m typically not hungry.  I haven’t thrown up which is wonderful!  And when I feel nauseous, I try to eat something.  Maintaining weight for the time being.

One thing I am ready to be all done with is my steroid shots.  Tonight I start the last of my final seven and then I shouldn’t have any more to worry about.  Did you know that you can actually change the texture of your skin to prevent a needle from passing just by thinking about it?  Yup, I have to psych myself out to give my own shots.  My juvenile diabetes friends with pumps, you two have earned extra kudos than I already give you!

Usually, by day 7-10 after an injection, I feel back to normal and can eat and play and sleep just like I should.

It looks like as I head into phase two, I should be able to ease back into work.  While I have enjoyed semi-retirement and focusing on not vomiting and sleeping lots, I think I’m ready to get my brain back to active and in the game, back towards working with more purpose and goals.

I think the chemo drugs have worked to sweep out all the cobwebs in my brain; many things seem clearer and easier (knocking on wood now).  Over the last year, I imagine this cancer crap has wrecked not just my boob but my whole well-being.  That selfish punk!  It made me tired and cloudy and out of it and simply not myself.  Now it’s gone–mostly gone?  Whatever–and I feel much more capable of tackling life.

Now, go click that website above, save some whales and teachers, and we’ll chat soon!

#nerdsunite

click here to check out Serena's blog. Very powerful stuff.