Blogaversary

I've been meaning to post for several weeks now, but life kind of took off and dragged me behind it...

However, TimeHop reminded me that a year ago was when I started this blog.  Prior to that, I'd only told a few close friends (and family) about my diagnosis, but I definitely went public with the creation of the blog.  Once again, the outpouring of support was awesome--and I'm so happy I decided to be public through it all.

So since the last time I posted, a few more things have happened.

I finished the immunization part of my clinical trial (will still have boosters every 6 months four more times).  This is exciting for two reasons.  First, it will cut my every-three-week Herceptin appointments in half time-wise.  Secondly, I'll be able to stop taking the preventative Claritin doses.    I don't remember if I shared how the immunizations are given. I get (got) 4 intradermal doses in my left thigh.  That's like the TB test where they put a bubble of liquid under the skin.  This is what they look like about 15 minutes after they're given.

Over the next 24 hours, the redness fades, then comes back unbelievably itchy!  

I'm also at the 9 month point in my 12 month Herceptin course.  That's good because at least one preliminary study showed similar efficacy of 9 months of Herceptin and 12 months, so even if I were to develop side effects that prevent me from completing the full course, I've gotten in the majority of treatment (and there's no sign of heart issues--my last MUGA scan in November actually showed improvement of heart function--68%--from the one done after chemo--56%).  

I no longer need blood work done at every appointment.  This last week Dr. Shah did some to check on a more routine basis.
WBC:  3.9K/mcL
Platelets:  85K/mcL  (low, but about normal for me)
Hemoglobin:  11.9 gm.dL (just barely low--pretty good for me!)

I've also been able to successfully titrate up to the full dose of Tamoxifen (20 mg/day) without the side effects I had when I first started it.  I've been splitting the dose and taking half in the morning and half at night, but I'm hoping to try to combine them into a single dose a day.  I hate having to remember pills twice a day.

The Effexor experiment was a terrible failure!  It's supposed to help with the side effects of taking Tamoxifen (hot flashes, mainly).  I think it was helping with that, but it had its own side effect of spiraling me down into a pit of anxiety!  The same thing happened when I tried a different anti-depressant (Wellbutrin) several years ago, so I'm thinking that I don't do well with non-SSRI antidepressants.  Unfortunately, SSRIs interfere with Tamoxifen.  On the bright side, though, I haven't needed one.  Fingers crossed that it keeps up through the winter.  I have my Happy Light at the ready just in case.  :)  

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I am now down to a single (full-time) job.  As much as I loved teaching, putting that on top of learning a new job was a bit stressful.  I do hope to be able to teach again in the not-too-distant future, but am enjoying some time off now.

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I've really enjoyed having nights and weekends free (see above) to hang out with my friends and family again.  Cara is home for the whole month of January, which is great.  We've spent a lot of time playing goofy family games (if you haven't checked out Jackbox.tv,  I highly recommend it!  You need an Xbox, PS or Steam account and a bunch of smart phones or tablets to play).  It's nice to also have time to cook--which I find very relaxing.

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And I've been knitting more again.  While moving Mom's stuff out of her house, I came across all her knitting stuff.  I'm working on "busting her stash" (that's knitting talk for using up the un-used yarn she had) and trying to finish some of her UFO's (unfinished objects).  I love my Thursday night knitting group (email or message me if you want to join us and I'll send you details). I've been on a dishcloth kick lately.

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Finally, I plan to try to get my weight under control with this new year.  I am ashamed to say that I have gained almost 35 lbs. over the course of my treatment.  I know it won't be easy to drop all that weight (possibly impossible, given that I'm now "post-menopausal" which makes weight loss a lot harder), but I feel generally yucky being this heavy.  I'm not going to focus so much on the weight loss, but on becoming healthier with exercise and hoping the weight goes with it.  I've stopped running and want to get back to that.  I also want to start yoga, but am not sure when or where or how to fit it in.  I'm open for taking walks anytime, anywhere, as that's always an easy way to bring in exercise.  And I'm open to FitBit challenges from anyone.  

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Here's to an amazing 2016 for all of us.  I'm making Hoppin John with greens today to help insure that.   :)

Tamoxifen, take two

Though I am not a fan of snow, it's kind of nice to be "snowed in" today with the whole family.  Mira was up early and made pancakes from scratch for us all.  I had eggnog in my coffee this morning, deciding to embrace the snow instead of despise it, and I'll spend much of the day correcting papers, reviewing a book chapter and planning the rest of my semester of teaching.

This week I had another Herceptin infusion and #4 of 6 immunizations in my clinical trial.  Nothing new to report there--same immunization-related reaction (chills, low grade fever, exhaustion) on the day after my appointment.  Same itchiness and redness at the site of the intra-dermal injections.  It's been three months since my last one, so I get another MUGA scan of my heart, too.

At my appointment with Dr. Shah this week we discussed the Tamoxifen situation.  She *really* wants me on it (or another estrogen blocker) and does NOT want to put me on Lupron (which is a GnRH agonist resulting in blocking estrogen production), which would be necessary to try aromatase inhibitors (Arimidex).  She doesn't want to do Lupron because the side effects are similar to those I've been having with Tamoxifen, and then if you add in another med (Arimidex) and its potential side effects, you're kind of asking for trouble.  However, she did say that she would consider switching me over after one year (previously said two years).  I told her I could put up with the pain for a year, but she suggested we try something else instead.  So I'm on a half dose of Tamoxifen now to see if the side effects come back.  The plan is that if they don't (fingers crossed), then she will titrate me up to a full dose--possibly split between evening and morning--and maybe I'll tolerate it better that way.  

I've also started a low dose of Effexor (an antidepressant used off-label to combat hot flashes) in hopes that I won't be woken up so many times in the middle of the night due to the hot flashes.  I'm not sure if they've gotten worse since adding the Tamoxifen, or if it's worse with the temperatures dropping (so I'm constantly veering between boiling and freezing), but I thought I'd try to see if I could get some relief.  I should know within a week if it's working.

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In other news, I've been at my new job two weeks now.  I love it!  Almost everything about it is completely new--including all the terminology and acronyms--and my brain is getting quite a workout, but it's really, really cool!  I'm ridiculously giddy every time I get a physical reminder of how I'm now part of the team (got my business cards, my name got added to the phone system, I ordered tops with the health department logo on them, got my ID picture taken). I work in a village hall (in one of the 7 communities covered by the health department) and it reminds me so much of my mom's work environment at the Iron County courthouse.  Everything about it--from the police department being housed right there (but behind locked door--they even have the good soda vending machine) to the break room--makes me smile to think how my life's changed since then.  It gives me a nice sense of comfort to have the familiar in the midst of all the new.

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I'm looking forward to seeing Cara this week for Thanksgiving.  The stretch from August to Thanksgiving is always so long.  I get Thursday and Friday off of work, so we will do some Black Friday shopping.  And we'll be having turkey with Greg's family for the first time in several years, and that will be fun.  

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Mom's house is ready to be listed.  The realtor will be coming to take photos tomorrow and it should go on MLS on Monday.  It looks awesome.  I'll be sure to post the link on Facebook when it's released.  My brother came down last weekend to help move the rest of Mom's things up North (including her motorized recliner).  Although he drove down, loaded up, and turned right around to head home, it was nice to see him, however briefly.

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.

1 of 12

Sorry--this will be a LONG one

Yesterday was the first round of 12 weekly infusions of Taxol and Herceptin (the Herceptin will continue for a full year; Taxol only the 12).  Dr. Shah called it "baby chemo" in relation to the initial 4 rounds that I had (AC).  After these rounds, I don't need the second day Neulasta shot, I don't need steroid pills, and I don't automatically take anti-nausea pills (only on an as-needed basis).  One of the things that is a relatively common side-effect with the Taxol, however, is an allergic reaction to the preservative that it is mixed in.  Therefore the pre-meds include Benadryl, Tagamet, and a steroid to attempt to ward off the allergic reaction.  They also push the first (double or "loading" dose) slower than normal to watch for side-effects.

I was lucky to have two chemo companions yesterday!  Kathrine was with me the whole 6+ hours:

And Kristi came for a few hours in the middle of the infusions:

My blood counts were "fine"--
Platelets: 77 thou/mcL
Abs # neut:  3.2 thou/mcL
WBC: 5.2 thou/mcL
Hemoglobin 10.9 (that's up)

I gained 4 more pounds <sigh>.


The Taxol infusion went well.  I wasn't even all that sleepy with the Benadryl (Kathrine and Kristi may disagree, as I may have made no sense as we were playing "Would Your Rather?").   And then the 90 minute Herceptin infusion started.  "No one" reacts to Herceptin, so I guess my body decided, as usual, to be difficult.  When I had 20 minutes left, and my nurse had sent almost everyone home (since it was after 5:30), I started coughing.  That's nothing major, since I've had this combo of the weepy eyes/runny nose/sore throat/cough thing for over 5 weeks now.  But this was a dry, tickle kind of cough and I'd already drank three glasses of water and gotten a significant amount of saline in my port.  And it was bad enough that I couldn't talk through it.  Didn't seem (to me) like an allergic reaction, but my nurse knew it was.  So she gave me another dose of Benadryl.  Like magic, the cough stopped.  But then I started shivering.  And the shivering wouldn't stop.  It was a full-body, feeling-like-I-do-when-I-get-a-low-grade fever, teeth-chattering shiver.  They wrapped me in heated blankets, and gave me a dose of steroids, and it still didn't stop.  Then my blood pressure spiked.  So they gave me another dose of Benadryl (that's three, if you're counting) and the shivering finally slowed and my blood pressure returned almost to normal for me.  Dr. Shah was in her street clothes, but hadn't left yet and she said NOT to finish the Herceptin dose this week.  They pumped in more saline, and then let me head home, dopey and babbling as I was.

Kathrine was kind enough to hit the Culver's drive-thru on the way home so I could get food for everyone (by now it was after 7:00 pm). I ate and then completely crashed in bed.  Greg said he came up at some point and poked me to make sure I was breathing because I was so out of it.  I think I got some pretty good sleep, because I was up at 3:30 this morning (steroids, I think!) and could not fall back asleep.  Let's hope the steroids keep it up through my work day.  :)

That first green link on the chain was well-earned.

An interesting bonus--at least right now--is that I woke up without a sore throat or runny nose for the first time since this cold/allergy thing started.  I'm thinking it must be an allergy that even the Zyrtec isn't touching.  Not that I'm recommending taking Benadryl regularly or anything.


Some other cancer- and non-cancer related things since the last time I blogged:

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I had another enbiggening session with the plastic surgeon.  :)   My right breast is now maxed out and my left breast (the one that needed the surgical repair) is almost there--and will be next week.  And this was a major "enbiggenment"!  After going almost 4 months without breasts, I was bumping into things with them.  Of course the fact that all feeling is gone from that part of my body doesn't help.  My friend Dawn calls her reconstruction "shirt shelves," and I agree.  I wanted "perky" and they are most definitely that.

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This Saturday Cara participated in Hamline University's Relay for Life.  She raised $150 for the American Cancer Society, which (as I've written before) is an organization that uses the money for research and not just "awareness."  One of the things that RFL does is sells luminarias, that can be decorated in honor or memory of a cancer patient/survivor/one who died.  This is the one that Cara made for me, and it brought tears to my eyes:

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I want to mention our TV binge-watching choice.  Starting in December, we'd watched all of the episodes of Buffy the Vampire Slayer and while we were watching it, we learned of the cross-over episodes with Angel.  We watched one and were NOT impressed with Angel, so neither Greg nor I wanted to watch that series.  But my friend Linnea said that we really should--and even tempted me by saying that my favorite character (Spike) comes back in Angel.  So we started watching it.  It's no Buffy, but I'm really enjoying it, too!  Some of the characters (like Doyle and Gunn) are really good, and even Cordelia and Wesley have grown on me.  We're almost as the end of the second season, so that will be our nightly TV for awhile.  The only current TV I've been watching is Big Bang (lighthearted fun), Grey's Anatomy (and I STILL haven't seen last week's episode with the big spoiler that's been all over the news and Facebook--and the only reason I'm still watching it is that I've watched it from the beginning), and Call the Midwife (which might be the best show currently on TV, in my opinion).

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And that brings me to the job situation.  Mt. Mary (tutoring) will end on May 11th.  My contract at UWM will end June 30th (with the budget stuff, not sure if it can continue).  I'm assigned to teach the "overflow" online section of PH101 this summer, but don't know if that will fill either.  So I've been looking for jobs.  I had a phone interview for a Public Health-y job last week.  It's full-time, which is a little scary, since I'm tired working 25 hours a week.  I have to believe that the right job will work out one way or another, since I've been fortunate  so far!