Tamoxifen

Time is just flying by.  Since my last post, Mom made her move Up North (email/message me if you want her phone number and/or address), I have almost finished my part-time job at Zilber (which was bumped up to full-time for a few weeks, but that's a different story), and I started on Tamoxifen.

One of these things did NOT go as well as hoped.  :)

I really cannot complain too much, as it's not like the Tamoxifen is making me house-bound.  But it's pretty yucky just the same.  All my joints ache, but especially my hips.  By the end of the day, it hurts to walk (so you know what's happened to my exercise plan and my great ambitions using the FitBit). And it's upsetting my stomach, too.

This week at my meeting with Dr. Shah, I told her about all the yucky stuff I was feeling, and she said that my symptoms didn't sound like typical Tamoxifen side effects, so the first thing we had to do was figure out whether they were being caused by the Tamoxifen or something else.  (She thinks it might be the Herceptin or the clinical trial meds.)  That means I'm off the Tamoxifen for three weeks to see if the side effects disappear.  So far my stomach upset has stopped (yay!) and I'm not as achy, but that might be because I've been using Advil and Tylenol to counteract the effects of the clinical trial (typical vaccine-related, immune response symptoms).  We shall see...

I'm not quite sure what will happen if it is the Tamoxifen.  Standard of care is switching from 5 to 10 years on it, so while I could tough it out and put up with the ickies through either the clinical trial (9 more weeks) or Herceptin (6 more months), I'm not sure I could handle it for ten years.  Guess we'll see what the next three weeks hold.

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Mom's move went very well and she's settled in and, other than missing her recliner, very happy in her new digs.  She's had visits from many friends that she hadn't seen in years, and is thrilled to be closer to my brother.  I'm much relieved that everything went so well, and also occupied readying her house to go on the market next month (anyone want to buy a ready-to-move-in home in an awesome school district with FABULOUS neighbors?  ;)

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And my last week of work at Zilber is crazy, but fun, too.  I decided to stay on to get through the travel stuff for the recruitment job, and that means that from today to next Thursday night, I have events non-stop, including an overnight trip to Delavan, a 3-day trip to Chicago, topped off with the UWM Grad School Fair next Thursday night.  Then I start my new job Friday morning.  Of course, I'm still teaching, too.  And I'm tired (very tired), but I'm not exhausted.  In June, when I could barely keep my eyes open enough to work one 8 hour shift, I never thought I'd be able to work full-time (plus) again.  It feels good!  Now if I could just shake the body aches... 

Major life changes--and some fear

I realize it's been almost a month since I last posted.  Partially it's because there's not been much cancer-wise to post about. Partially it's been because I've been so busy that I haven't actually had time to sit and write a post.  But mostly it's been because I haven't so desperately needed to blog lately.  I began this blog to give myself something to do during my (at the time) upcoming recovery, and to help myself remember my journey.  But it became a sanity-saver and a mood-booster, as I (selfishly) watched the numbers on Blogger's Stats page.  My highest count was 314 on one post.  314 of you read something I wrote (or a few of you read it many, many times...).  I doubt that anything I ever have written (publications?) or will write professionally will be read by that many people.  That's a huge bump to my ego.  :)  However, I haven't needed to see those numbers as much, as I'm re-entering, and slipping back into a less me-focused place.  As I have been going through treatment, I've found myself very self-centric.  I liken it somewhat to both the toddler and the teenage years, where it's difficult for the kid (or me!) to look at life through anyone else's lens but their own.  I realize that it's at least partially necessary, as healing takes so damn much energy!  But as I've regained energy, I've been more easily able to shift the focus from me-first.  That excites me.

So as an update, I'll start with the cancer stuff, following my appointment with Dr. Shah yesterday.

My weight is still up a little bit.  Admittedly, I haven't been trying too hard to eat healthy (busy life = quick food and too many carbs), and I'm not running much, although I have a FitBit now and that does make me work hard to get in at least 10K steps a day.

My labs are fine:
Hemoglobin 11.3 gm/dL
White Blood Cells 4.2 thou/mcL
Platelets 72 thou/mcL

I'm glad that I'm mostly maintaining my hemoglobin with only one iron tab a day, and that my platelets are hanging in there.

I had my second "Herceptin-only" infusion yesterday.  I'll have these every three weeks until April 13 (if I did the math correctly).  I didn't write after my last Herceptin infusion, because it didn't go all that well.  I mentioned earlier how I am taking part in a Phase II Clinical Trial for NeuVax ("the breast cancer vaccine").  I had my first inoculations (4 of them) last visit, and will have the same four given each of these first six Herceptin-only infusions.  After the first ones, which hurt like hell, by the way, I came home and crawled into bed, shivering horribly, with body aches, a fever, and generally feeling like I had the flu.  The injection sites had knots under them, were red and swollen, and itched like crazy for over a week.  As I was lying in bed that night, miserable, I started to look up more information about the NeuVax trials--which was a stupid idea in that state!  I did find something that said low platelets could be a reason to exclude a patient from the clinical trial, as could an autoimmune disease.  So that freaked me out a bit.  I then struggled mightily about what to do with my participation in this clinical trial.  I have, from the start, been absolutely sure that I wanted to do this, half-joking that I owed it to all the mice I sacrificed in the name of science for my doctoral research.  But now I was starting to have doubts--especially after reading the sensational posts about NeuVax and how it was doomed to fail, and actually increased the risk of breast cancer returning (ahem. I *teach* how to know a website that gives reliable health information from an unreliable one, and I was still being sucked in).

Anyway, I did call the Clinical Trial team and voiced my concerns.  They immediately contacted the lead PI on the trial and reassured me that I was still eligible (the platelet thing was in combination with other risk factors, but they will still watch my levels closely, and ITP is not an autoimmune disease that they were concerned about).  Furthermore, now that this trial had been going on awhile at different sites (did I mention that I was the first one enrolled in the trial at my site? First for the nurses to give the injections?), they had some tips to ease the side effects.  I also convinced myself (whether correctly or not) that if I had such severe reactions to the injections, I must SURELY be getting the real thing (I'm blinded to whether I'm getting drug or control).  So I took Tylenol before this round, and have kept up my levels since then.  The injections weren't so painful this time (nurse had more practice), and while I hit a wall of exhaustion last night, it wasn't as bad as the first time, and I didn't have the other flu-like symptoms.  Best of all, I'm helping out Science and Cancer Research in a way that not just anyone can do.  Take that, Pinktober!!!

Since I'm doing so well--almost no signs left post-radiation other than a bit of a tan around my right breast area--that meant that yesterday I got the all-clear to start the next phase of my treatment: hormone blocking.  My particular tumors were estrogen and progesterone receptor positive, so I need to take adjuvant therapy (pills) to block the hormone production. The big choices are Tamoxifen or an aromatase inhibitor (most common is Arimadex).  Most of the estrogen in the body is produced by the ovaries, and Tamoxifen blocks its production. Aromatase inhibitors only block hormone production by fat tissues.  As you can imagine, a drug that only acts on one type of tissue (fat tissue) would be expected to have fewer, less-serious side effects.  And that's the case.  So if your ovaries are no longer producing estrogen, aromatase inhibitors are for you.  However, if you're pre-menopausal, you need the bigger guns that act on your ovaries.

I'm not (yet) post-menopausal.  I've been lucky enough to be going through chemically-induced menopause most of this year, but I'm not clinically there yet.  So I get to at least start with Tamoxifen.  The plan is, if I've still not had a period in the next two years, to switch to an aromatase inhibitor at that point.  Recommendations are continually being revised as to the amount of time it is best to stay on hormone blockers.  Standard of care currently says five years, but there are multiple studies now looking at ten.  Who knows what they'll recommend in five years from now.

For some reason, the Tamoxifen is causing me much more fear than the other treatments I've had.  Maybe because I knew the others had a relatively short timeframe?  Maybe because I had no time to think about the other treatments without having to just DO them?  But mostly, I think, I'm afraid because this is supposed to be the "easiest" of the four (surgery, chemo, radiation, hormone therapy), and while I wouldn't call the other three pleasant, they haven't been as bad as I expected.  And now I'm afraid this will be even worse than I fear.  The side-effects scare me:  blood clots, uterine cancer, cataracts, intense menopausal symptoms, weight gain, depression, trouble sleeping, vision changes.  Maybe I'll be pleasantly surprised by how easy hormone therapy is, too.  If only I could convince my brain of that!

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There are a few major changes in my family, too.  One of the biggies is that my mom, who has lived next door to me for the last 7 1/2 years, is moving back Up North.  It's really her story to tell, so I won't elaborate much on it, but I know she is looking forward to seeing all her Hurley-area friends, and especially living close to Steve and Amy.  And I realize it's time.  I had her here for the majority of my kids' growing-up time.  She came down when Mira was  in Kindergarten, Travis finishing Elementary School, and Cara finishing Middle School.  She gave my kids a chance to have a grandparent be part of their everyday (every day!) lives, and she made it possible for me to go back to school and to earn my grad degree.  But now my brother should have a turn.  :)


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The other big news is that next month I will have a new job.  Not only will it be a full-time job (my first since 1997), but it will be a job in my field--the one I went to school for 5 1/2 years for.  Starting November 6th, I will be a Public Health Manager at the North Shore Health Department, which services seven suburbs in Milwaukee County.  I am beyond excited to start, while at the same time being sad to leave Zilber--especially all my co-workers (past and present).  I am lucky that I am able to continue to be Adjunct Faculty at Zilber, and will continue to teach PH101 this semester, and possibly other classes or give guest lectures in the future.  To be honest, I'm a little afraid to be leaving that cocoon, too.  I've been part of the School of Public Health for over 6 years.  But--again--I think it's time to do something else.

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Besides all that, life continues to be very good.  Mira had a great season with the Middle School Cross Country team and got second in her age group at the Panther Prowl today, running a 24:30 5K.

 Travis is getting ready to apply to colleges, and is enjoying his Senior Year.  This week was his last homecoming, and he's at the dance right now.

I assume my posts here will continue to be less frequent, but it's been really nice to write again, so I certainly won't stop entirely.  I'm also looking forward, with my new job, to have normal hours and therefore evenings and weekends off!  I've loved re-connecting with many of you, and hope we can continue.  I'll be crazy-busy between now and the end of the year, working 125% (full-time job plus 25% appointment teaching), getting Mom's house ready to put on the market, and all the other things that come with life.  But come that first week in January, I fully plan to celebrate my first year Cancerversary.  :)  It's giving me something to really look forward to.