Lurking fatigue

Today I learned that I have moved into a new category of fatigue.  I learned that for the past week I was feeling a type of fatigue that was evident even when I was doing nothing:  obvious fatigue, bone-crushing fatigue.  This is in contrast to my new fatigue, which I am going to dub lurking fatigue.  This type of fatigue allows me to wake up and enforce my optimism, but slaps me down shortly after noon.  It's not so bad, this lurking fatigue, but I will need to set the bar a little bit lower for myself than I did for today.

I went to work for four hours, and by the end my body had backtracked to Tuesday.  I rested and slept for most of the afternoon, but I have still not recovered to this morning's potential.  Time to go sleep, and I'll try to better pace myself (i.e. be more realistic about the new me) tomorrow.
      

Hey, that wasn't so bad

I'll start by reminding you of my chemotherapy program, and for the first time I have enough energy to get off my butt and look up the names of the drugs:  *week 1, Taxotere, Carboplain, and Herceptin; week 2, Herceptin; week 3, Herceptin*; repeat between * six times, for total of 18 weeks.  Today was the week 2 treatment, and the only side-effect preventers that I was given were 2 tylenols and 1 benadryl by mouth.  That's a good sign right there, in contrast to last week when I was given an hour's worth of side-effect preventers by IV.  I am delighted to report that I don't think I am feeling any side effects of today's treatment.  I think I am still feeling the residuals from last week (a bit of digestive fog and a bit of fatigue hanging on), but *I am better than yesterday*; and I hope to repeat between * until the next big dose.

It has come to my attention that some of you are confused about the mechanics of my port.  All I have to say to that is, exactly.  When the surgical evidence has dissipated, I promise to do a port photo-shoot for you and launch a port-renaming contest.

I did indeed go to work for two hours yesterday.  It was glorious to be surrounded by my colleagues and friends, most of whom I hadn't seen since my catapult into cancer less than two weeks ago.  I also spoke with my boss about how to balance work, life, and cancer.  He is so kind and wonderful, and assured me that he will work with me however is needed.  The two big things are 1) signing up for the leave-transfer program, which will allow folks with extra vacation time to donate that time to me because I will run out of my own vacation time very soon (this mechanism of leave-transfer could possibly keep me off of disability for awhile), and 2) working around my health in the event that I get an interview.  That's right, I said interview.  In mid-October I applied for a full-time scientist position within my current unit at the USDA, a position I really really really want and am really really really qualified for.  I'm very hopeful that I'll get an interview, but that interview will likely be sometime around Thanksgiving, and I will obviously still have cancer and still be undergoing treatment.  We talked about the scenario where I get an interview, and he said he'd be willing to work with me to interview on a "good" day.  So, a big sigh of relief on the work front, which translates to a huge sigh of relief on the paycheck front.  Now I just need to figure out how to actually get work done and prepare for the interview, but I'm feeling so much improved from yesterday that I have high hopes for productivity next week.  By next week I mean tomorrow, because Wednesday is the new Monday in my world.  

I'll leave you with an anecdote about my surgeon.  My husband Ian saw him in the hospital today, and where Dr. Surgeon previously had a head full of hair, he now has none.  Yep.  He shaved his head.  Ian commented on it and the surgeon said that he shaved his head for ME, and that it's the best good-luck charm you can give to someone.  Ian was already planning to shave his head when my hair actually falls out, so that I don't have to be the only bald person in my dad's wedding pictures (yikes!) later this month.  I suppose this is starting to sound like I'm lobbying for you all to shave your heads, but I'm not.  The purpose of this anecdote is to suggest that you send some of your positive thoughts and prayers to yourselves, including Ian and Dr. Surgeon, for being the unique and incredible network of people loving and supporting me.  I couldn't do this without you!                    

Poke tally:

left arm  4

right arm 3

"port"  2

left breast  1

superior vena cava 1

tummy  1    

Side-effect roulette

I had my first nearly sleepless night last night.  Turns out that the anti-nausea drug that was making me foggy was also helping me sleep.  Now my head is happily perched on the hillside, overlooking the fog in the river valley that is my digestive tract.  All night I was in total sphincter failure, from heartburn on down.  I took my non-brain-fog-inducing anti-nausea medicine at 11:00, ate some frozen yogurt at 12:15 (microbes unite!), but neither of these helped.  We don't have any heartburn meds in the house, but that will be corrected before sundown today.  All of what I'm calling river valley fog was included in chemo 101, but I'm guessing that the reason it hadn't surfaced before was because one of the side effects of the anti-nausea medicine was constipation; therefore, the two opposing forces cancelled each other out.  Now I seem to have traded the brain fog for digestive tract fog.  Boo!  

This makes me wonder what effect chemotherapy is having on my gut microbiota (gut microbiota:  all of the microbes that live in a digestive tract.  Fun fact: there are more bacterial cells associated with your body than human cells!)  Is anyone studying this?  Are my gut microbes going crazy because they too are affected by the chemotherapeutics, or are they going crazy because my immune system is no longer keeping tabs on them, or are they not going crazy at all?  Would probiotics help me to feel better, sooner?  I can think of at least 10 of you who have already launched Pubmed to answer these questions for me.  I can think of at least five of you with whom I would like to collaborate on a grant to ask, and then answer, these questions.    
       

Let's keep the science rolling, shall we?  Thanks to my friend Dr. Jason for explaining what neulasta (aka bone cuddle) is in his comment:  "neulasta is a colony stimulating factor- it stimulates precursor white blood cells (granulocytes) to grow, divide and mature more quickly to help your bone marrow keep up production during chemo. It is also covalently bound to polyethylene glycol so it hangs around in your body longer."  My delightful oncologist elaborated on this yesterday and said that neutrophils (a type of white blood cell) are specifically upregulated.  Neutrophils are your body's first defense against infection (shout out to Rose and her neutrophil-studying splendor).  And this is when it dawned on me how neulasta got its name:  Neulasta, helping your NEUtrophils LASTA bit longer.  Oh yes I did.


     

I am not a (known) mutant

Here's how awesome my doctor is:  she called me today at 1:40 and asked if I could come it, just for kicks.  It's 2:40 and I'm already home.  She is so awesome.

As you may recall, my blood was sent away for some genetic testing.  Specifically, we wanted to sequence two genes (BRCA1 and BRCA2) that are commonly mutated in certain types of breast cancer.  The outcome doesn't affect me too much, but it's great news for my sisters and daughters:  I am not a mutant!  My first question was does this mean that I get to keep the right one?  She said that we'll make that decision based on further tests after chemotherapy.  But at least it's up in the air!  It would be a goner for sure if I was indeed a mutant.  Funny how I still feel attached to it, even after the left one has so viciously sabotaged my life.

More good news:  the left breast is responding to the chemotherapy.  It is already less inflamed.  Let's hope it keeps responding.

We also discussed the muddy-brain side effect.  She said that one of my anti-nausea drugs could be the culprit, so I am done messing with that guy.  In addition, she simply nodded knowingly and told me to make sure I keep using my brain.  A friend of mine who went through chemo last spring told me the same thing.  Good advice, but this brain won't go dormant without a mighty fight anyway.

Today is the best I've felt since chemotherapy last Wednesday.  I've been on two (short) walks, engaged with my kids, and executed two (small) projects.  I'm going to go into work for a little bit tomorrow, although I will ask my brother for a ride because I don't feel good enough to operate machinery.  But I can probably operate Excel, huzzah!

Instead of viewing it as 18 monstrous weeks of chemo, let's view it as 6 difficult, side-effect-riddled doses.  So I'm already 1/6th of the way there, which is practically halfway!  Go team!

Divergent

In my scientist life, I study genes that make bacteria resistant to antibiotics.  I am especially interested in how these genes evolve.  To guess at how they evolved, I draw trees, much like a family tree, except with genes.  When two genes are found to be related, they are often said to have diverged from their common ancestor.  Well, it is false to say that I am evolving, but right now I can't help but see my life as analogous to one of these trees.  The difference is that on my science trees, both branches exist.  On my life tree, the branch I'm on is the only branch that exists, so I guess there's no point lamenting over the pre-cancer branch (a tempting endeavor, I assure you).  Nonetheless, I can't shake the notion of how far my life path has diverged from what it was merely two weeks ago.  I don't feel at all like myself, and yet this is my new self.  Tasks such as walking around the block are difficult, and I can't count on myself to make coherent conversation.  And let's not forget about the port.  I am deeply divergent.   

I need to remember that it won't always be this way.  Hopefully tomorrow will be better.  And in looking past tomorrow, previous divergences have always led to the great life I have now.  Why should a little cancer be any different?       

In other news, huge shout-out to Ashley for the fantastic hair cut today!  She cut it here in the kitchen, and it is adorably short.  I wanted it short before it falls out, in the off chance that it is less traumatic that way.  (Photos of the Cancer Cut are linked at the right.)  Second shout out to Sandra for bringing the scarves that I will rock so hard.  I've already started the count-down for the return of my long hair, but I am grateful for the help to look presentable in the meantime.  Maybe without the ponytail I will look like I have a PhD.    

Turtle

I got up and had breakfast with my ladies this morning.  Every movement made me feel like a 100-year-old sea turtle laboring across the sand.  Time to return to the sea.

Bone cuddle

First of all, vicoDID but vicoWON'T.  It made me nauseous, woozy, cry, and my wound still hurt.  This morning I took extra-strength tylenol, which is my momentary hero.

Although I had trouble falling asleep last night, I had no trouble sleeping.  I was warned that one of the drugs (dexamethasone, given prior to chemo to prevent nausea) would keep me awake, but either it didn't or it hasn't.  I was almost disappointed because I already had the title for the 3 am blog post, but there's always a next time.  

This morning I had to go in for a shot of nulasta (again, I am ignorant of the spelling).  My mind is too fuzzy, so I forgot to ask how it works.  But I know that it's purpose is to help my white-blood-cell-generating cells to recover from yesterday's chemotherapy, and these cells reside in my bone marrow; therefore I have been thinking of this nulasta as a big ol' molecular hug for my bone marrow.  

This begs for a brief chemotherapy lesson, although I am still not going to get up to read from the paper that contains the names of my drugs:


chemo drug 1:  Specific to a receptor on my type of cancer.  Should just go straight to the cancer culprits and somehow take 'em out.  I would like to know more about this on a molecular level so that I can explain it to you.  I will put this on my question list for my AMAZING oncologist.  I have not given her enough props yet, but let the props begin here and never end.  She is a real-life rockstar.  And props to all of the research scientists out there discovering new chemotherapeutics; you too are rockstars.  Anyway, because this drug is brilliantly specific, there are few side effects to my other body parts.  Nice.  This is the drug that will enter my port weekly.  


chemo drugs 2 & 3:  General to all fast-growing cells.  This includes cancer cells (yay!), but also other fast-growing cells in a body, such as hair folicles and blood-cell-generating cells (boo!).  This is why my hair will fall out and why my immune system will waffle between weakened and obliterated (mmmmm...waffles).  These drugs will enter my port once every three weeks, for 6 cycles.  So one dose down, only 5 to go.  Huzzah!


And now my brain is spent, which is probably evident despite my best efforts to hide it.  Fuzzy fuzzy fuzzy.       

Poke tally:

left breast  1

left arm  4

right arm 3

superior vena cava 1

"port"  1
tummy  1