Monday, November 29, 2010

Scaffolds of people

I had an awesome weekend with Ian and the girls.  We walked four blocks to the grocery store, picked out a small Christmas tree, and dragged it home in our red wagon.  Azalea herself did a significant share of the pulling.  I smell a new holiday tradition for the family!  Needless to say with this good health I will be going to work all of this week, except for easy chemo day (Wednesday).  Speaking of work, I was invited to interview for the permanent scientist position that I applied for before I got cancer (see post "Hey, that wasn't so bad"), and my interview is Dec. 7th.  That gives me one week to put together a knock-their-socks-off presentation.  I think I can, I think I can, I think I can...

On Thanksgiving day I felt terrible with chemotherapy-related digestive issues and lurking fatigue.  This led to the additional phenotype of being antisocial, which ordinarily is not a problem for a family event.  However, Ian had invited a friend of his to join us for Thanksgiving, and I felt (still feel) bad for not doing a better job of drumming up conversations with him.  He seems like an interesting person, he is certainly nice, and he made delightful funny faces for my daughters.  I later realized that an additional part of my conversation deficit was due to the unfortunately few facts (half of which are unfortunate) that I know about him.  I will call this my scaffold of him, which is as follows:

He served in Iraq, in the Army (I think).  His mom passed away last spring, of multiple sclerosis.  He and Ian enjoy watching Monday night football together.  He shaved his head when Ian and I shaved ours.      

I think of it as a scaffold because it is the beginning of my knowledge of him, just as assembling a scaffold signifies the beginning of a project.  I hope to progress beyond a scaffold of this person, and I'm sure I will eventually, but you can see how this particular scaffold presented a challenge for me on the Thanksgiving holiday.  We got a lot of mileage out of the fact that he shaved off a mole when he shaved his head, uncorking a large volume of blood from his scalp.  After that, I couldn't think of an appropriate conversation to launch from my scaffold of him.  

This got me thinking about the scaffolds that other people build about me.  Most of you have known me forever and so your scaffold is long gone (except for when I need repairs in your regard), but what about strangers or new friends who are reading this (such as Bernice L. cool is that)?  Inflammatory breast cancer is certainly a load-bearing post on their scaffolds of me, and I'm not sure how I feel about that.  I have had complete control over most other facts about me; indeed, I have worked hard to assemble this certain pile of facts.  The cancer fact, however, is ugly and interesting, making it a likely component of all future Heather scaffolds.  It's a part of my scaffold over which I have no control, analogous to the death of the mother in my scaffold of Ian's friend.  I'm sure everyone has something like this in their scaffold, some horrible I-feel-sorry-for-you fact, but I'm pretty sure it's my first one.  And eventually I'm sure I'll get used to it, own it, be proud of it.  I just hope it doesn't wreck future conversations before they even start.        

As a result of this thought experiment, I have added a blog feature called "Scaffold of a Person".  I will feature someone in my life and present a scaffold that I would build of them if I were to introduce them to someone.  Let me know what you think...this is clearly one of those things that could be more fun for me than it is for you, although you might find it fun to learn more about fellow commenters.  I promise to only use first names, and to be nice.  Also, let me know if you don't want me to build your scaffold on this blog, because you could be next!

Wednesday, November 24, 2010

Not just another day-of-thanks post

I have finally turned the corner on the fatigue, and yes it took longer this time.  I asked Dr. Oncologist about that today, about the nearly infinite fatigue, and she said that it's not uncommon for the fatigue to last a bit longer with each treatment.  Argh.  I find it so frustrating to be knocked over by the fatigue, probably because there is so much that I want to be doing.  But it is truly impossible to overcome the fatigue, and believe me, I try to overcome.  It's like someone put lead in my bones.  Nothing to do but lay down and wait (and wait, and wait) for it to pass.  And it is passing.  I'm a third of the way through the hard chemos, huzzah!    

I am aware that I am slouching on my graphs.  This is because my white blood cells are uninteresting.  Apparently I have Wonder Woman white blood cells that are unaffected by chemotherapy, or the weekly analysis is too infrequent to capture their periodic demise.  I will continue to think the former, although the later is certainly closer to the truth.  My platelets, however, are doing something interesting, so let's graph those now.  I plotted "chemotherapy" arbitrarily, giving the hard weeks a value of 100 and the easy weeks 0, because it's easier to do that than give the graph a second y-axis.  You can see that my platelets hate the hard chemo as much as I do, if not more.  Dr. Oncologist says not to worry, I'm not going to bleed to death, but don't take any ibuprofen or other platelet-killer drugs.    

I think I would fail as a blogger if I didn't wax somewhat sentimental on Thanksgiving Eve.  I do indeed have tons to be thankful for, first of all that the cancer was caught in the act and not after the crime.  I have a fantastic husband and the absolute best daughters in the world.  And have you met my parents?  Or my brother or sisters?  Or the rest of my family?  Not to mention my friends, who bring talents and laughter from around the globe right into my life.  I have an enviable collection of loved ones, and I am thankful for all of you.  I am sending you electronic, germ-free hugs right now.  I love you.  

Speaking of loved ones, my siblings are converging on my living room tonight to eat pizza and watch Planes, Trains, and Automobiles.  Might be the first night in a week that I stay up past 9:30, so look out!

Long overdue Poke tally:
"port"  4
left arm  4
right arm 3
tummy  2
left breast  1
superior vena cava 1


Monday, November 22, 2010


I love weddings.  I especially love weddings with a great band and a big dance floor, as my dad and Barbara had at their wedding this past weekend.  Ordinarily I am the ideal wedding guest, populating the dance floor so that you don't have to.  I was not myself at this wedding, however.  I sat, picked at my food, and turned away hugs.  I know!  But I'm so grateful that I was there, because it really was beautiful, and not many kids get to see their dad get married.  He looked so happy!

Instead of moaning about all of the ways I felt like shit this weekend, let's talk about all of the people who made it possible for me to even attend my dad's wedding.  Like my stoic husband, Ian, who hauled me and the kids to so many events.  And my amazing mother-in-law who swooped up the kids after the ceremony so that Ian and I could get a good night's sleep.  And my sister Hil who loaned me an outfit.  And everyone who was patient with us as we were late to pretty much everything.

A lot of people have been telling me that I look or seem like I'm doing better than I was the first time.  That's super, but I can't say that I agree.  No surgery this time, so that's good.  The fatigue is equal this time, if not greater after a weekend of not enough rest.  The nausea and other digestive tract issues are less so far, but now is when they picked up steam previously so I think it's too early to say.  The brain fog is slightly less.  Sounds like I could be better than the first time, but enter the new issues of wedding stress, holiday stress, and family stress, and the result is a yucky mopey tired Heather.

Let's find a positive note to end this on, shall we?  My sister-in-law and her family are here for the week from Illinois, and her kids are the cutest!  There should be lots of cousin fun going on in our house, which will be happy.  Also, Ian and I shaved our heads, and we're a pretty cute bald couple.  I'll post some pics when I'm feeling more photogenic.              

Thursday, November 18, 2010


Yesterday's chemotherapy was the anti-cancer trifecta.  I spent far too much energy on Monday and Tuesday (during which I worked 8 hours each day, huzzah!) dreading this chemo session.  I tried very hard not to dread it, even as others reminded me that it will be better by not having port surgery on the same day and by not taking Composine (the anti-nausea pill that made my brain muddy/crazy).  Indeed, my fear turned out to be no match for the positive thoughts that surround me, and it was with a cautious smile that I walked with Ian to the cancer center yesterday morning.  Let the side effects resume!

In the interest of troubleshooting my anti-nausea medication, I drummed up a discussion with Dr. Oncologist about the possibility of medicinal marijuana.  I myself am not a smoker, but other cancer patients have sort-of recommended it to me as an excellent appetite stimulant.  I must say that I was rather relieved when Dr. Oncologist was less than enthusiastic about this option, because I don't know how I could have smoked it anyway.  Seemingly as a result of this discussion, she gave me a prescription for a very expensive anti-nausea medicine.  I wasn't trying to get new drugs, I was just wanted her professional opinion on this thing that had been recommended to me.  At any rate, my new anti-nausea drug is the same one that I get in my IV during the hard chemo sessions, and now I have two pills (we paid $50 for the pair, in addition to whatever insurance covered) for today and yesterday.  So far, I am slightly more comfortable than last time, although eating is still the worst part of my day.  But at least I'm not as nauseous in between meals.  Hopefully the improvement holds.

Fatigue.  Yes.  It started rearing its ugly face late this morning, and it is hunkering down for the long haul.  I must say, Dr. Oncologist has the timing of these treatments down to a science.  I was just starting to feel tip-top and on top of the world earlier this week (excepting the dread, of course); I guess that means it's time to kill some more cancer cells.  And we ARE killing cancer cells.  My left (cancerous) breast is getting softer and less swollen every day, although there is still a focal point of firmness.  Dr. Oncologist says this may be a bit of scar tissue from the recent biopsy, but I know that this has always been the focal point of hardness and so I will continue to beam your cancer-fighting positive thoughts directly to that spot.

I suppose that I'm biased as a microbiologist, but if I were a doctor I think I would prefer to be an infectious disease doctor rather than a cancer doctor.  When an infectious disease doctor administers a drug, it should help the patient feel better.  When a cancer doctor administers a drug, it makes the patient feel like ass.  I know that in both scenarios, either drug will ultimately lead to the improvement of the patient's health, but I don't think I could stomach the induced suffering that comes with being a cancer doctor.  This thought experiment has led me to appreciate Dr. Oncologist even more.  She is a brave soul.

Saturday, November 13, 2010

Picking up where the leaves left off

Residents of the Midwest know that the last of the autumn leaves have been whipped off the trees this past week.  Seemingly commiserate with the dropping leaves, my hair too has begun to fall.  Fortunately, I am not one of those whose hair is coming out in "clumps"; instead, 5-10 strands come out every time I run my fingers through it.  Intriguingly, none of the hairs have roots.  I suppose this makes sense, that the root was killed by chemotherapy and so the rootless hair falls out, but the result is striking nonetheless.  So far the hair loss is not really bothering me, probably because hair prevails on my head.  I'm sure after a few days, after the remaining wisps of hair have lost all familiarity, the hair-loss adventure will grow wearisome.  

Thursday, November 11, 2010

A day in the life

Today's post is a photo narrative of a chemotherapy day, such as yesterday.  Please click here to see all of the pictures and captions.  Below are two highlights.

As promised, the port.  In the album, there are "action" shots of the port as it was used yesterday.  

Yea, I have a problem with setting the date on my camera.  Below I am receiving chemotherapy in a private room.  Yesterday I knitted a scarf for Azalea (Holly, I'll work on your blanket next time).  More pics and details of the whole process can be viewed here.  

And look below for how my white blood cells have rebounded from the first round of yucky chemotherapy (2 weeks ago yesterday)!  Thank you, Neulasta!
In other news, I am feeling good.  I have two new side effects of chemotherapy that are, shall we say, opportunistic infections, so now I have two new prescriptions for those.  My aunt bought me a pill box, which is really wonderful, but it's slightly horrifying that I need a pill box.  The previous side effects of brain and digestive tract fog have subsided. I still have a bit of fatigue, but is so mild that it is impossible to distinguish cancer fatigue from living-with-two-small-children fatigue and time-change fatigue.  Today, for example, the fatigue really only hit me after I gave my 3-year-old a piggy-back ride for six blocks.  But it is awfully convenient to blame the chemo.  

Sunday, November 7, 2010

Bonus: a graph!

I rocked it this weekend and was pretty much my old self.  Side effects have all but disappeared.  The only reminders that I have cancer came from our refrigerator (which is bursting with food-filled tupperware, thank you everyone), my port (curses!), and my hair cut (not for long!).  I'm going to try to work a normal week, except of course for chemo day itself (Wednesday).

Today I finally went through all of my piles of cancer crud, and one of the things I found were the data from my blood work.  I am missing data from the day of my surgery, but you can count on me to ask for it at my next visit.  That data point is important because it was taken right before chemo started.  But even with the mere two data points that I have, you can see what can only be the effect of chemotherapy on my neutrophils:

 Ian is teasing me for graphing this, but I can't help it and it only took a few minutes.  Along the x-axis are different types of white blood cells, and the y-axis is the absolute cell count.  The blue bars are my counts from 10/20 ("you have cancer" day), and the red bars are from this past Wednesday (2-weeks later).  It will be exciting to watch the counts as my treatment progresses!  (Nerd salute!)

Please note that I've added a feature at the bottom of the page, which is a list of the books I've read since the diagnosis.  Not that you'll want to follow along, but it might be interesting to see if a theme develops that particularly relates to my present situation.  These first two books couldn't be more different, but a survivor theme is definitely present.

Thursday, November 4, 2010

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.

Wednesday, November 3, 2010

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    

Tuesday, November 2, 2010

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.


Monday, November 1, 2010

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!