Disability--and depression

First a quick update:
Friday was bone marrow biopsy #4. On a scale of how much it hurt, I'd put it at third. But it healed quicker, allowing me to bike already on Saturday.

I will meet with Dr. Atallah this Thursday to get the results (including cytogenetics) and presumably to start another round of chemo--7 days of Vidaza infusions. I've updated the Google Doc with additional days I'll need rides. Some of those might be longer, if I need transfusions. It will be interesting to see what happens to my counts this time. My hemoglobin and platelets are actually still pretty high (Friday they'd gone up from my Monday appointment--86K!), although my neutrophils are on a steady decline, which means my brief ability to be out in public for coffee is gone again. At any rate, Greg can always come get me post-transfusion if you sign up to drive me but have to leave before I'm done.

Today, Monday, February 24, is my first day on disability. I have been out of work for 90 days. That's the length of a maternity leave (I would much prefer to have a baby to show for this!). It's something I never thought I'd need, but here I am, and I'm so relieved to have it available. I am fortunate, too, to have amazing co-workers who donated sick time to me so that the number of days I went without any pay were minimal. Throughout this whole experience, I have been continually brought to tears by the generosity of all my friends. I cannot imagine how people do something like this without that support. I will say, however, that it has been tough to not be working and using my brain. I worked throughout my breast cancer treatment--first part time and then full time--and it allowed me to feel at least somewhat normal. I miss that normalcy.

And that brings me to the "depression" part of this post.

Facebook has been reminding me of events that led up to my first bought with Major Depressive Disorder with Anxiety. Eleven years ago this week, after a lifetime of nothing more extreme than PMS, I was completely debilitated by a depressive episode. After twelve years of being a stay-at-home mom, my baby was in school and it was time for me to go back into the workforce. I didn't have a plan for what I was going to do beyond "return to the workforce when the kids are in school." I started applying for jobs either in or out of my first career field (education). I was turned down from every job I applied for. I looked into returning to school to be a nurse, which was what I always thought would be a great fit, and every program would have made me start over with 100 level science courses since I'd been out of school so long. (Never mind that I'd taught or tutored those classes, because it was more than 10 years, they didn't count.) I felt useless--my kids didn't need me like they had and I wasn't contributing to the household at all. I felt lost, and I fell apart. I was fortunate to have insurance which covered me to almost immediately see a therapist, while waiting for an appointment to see a psychiatrist and get medication help. I was virtually bed-bound and unable to interact with anyone beyond my immediate family. It was terrifying--for me, but I know for my family, too. And over a period of several months, I was able to learn coping strategies (my therapist was awesome) and of necessity I weaned off of the Zoloft I'd been prescribed (because it was causing my platelets to drop even lower and the psychiatrist was concerned).

Then midway through my second year of grad school, it hit me again. They tried another antidepressant, which spiraled me into further anxiety (I guess this is relatively common), and it took a few months to get out of that episode, too, although I was able to continue to go to school and work through it. My therapist had retired by then, but I used the skills she'd taught me and worked my way back out again. And it wasn't until I found the lump in my breast in November of 2014 that that feeling overtook me again. I went back on Zoloft through my breast cancer treatment, until I couldn't be on it anymore (when I started Tamoxifen). And I found that, despite my fear of not being able to take them, I was again fine without them.

At any rate, I have been thinking a lot about depression lately. Right now I'm in a relatively similar situation to where I was eleven years ago--home full-time, mostly alone. I feel like I don't really have a purpose, as I'm not working. And if you add in the bit about being mostly house-bound plus that diagnosis of a second cancer, it would come as no surprise if I'd again feel depressed.

And yet somehow I'm not. I'm frustrated at my lack of contributions and I fear my brain will forget how to work. I continually list the things that I had planned to do this year, but won't be able to (go to Trav's graduation; bike the 150 mile Scenic Shore; visit Cara in La Crosse; do college visits with Ash...), and I have momentary periods of sadness and "that's not fair!" but I have not fallen into that depressive spiral through any of this.

I have a theory. Eleven years ago, at least in my mind, I felt that depression was not something to talk about. It was something that you hid, and tried not to label. Medication and therapy were both looked down upon. And so I tried to face it mostly alone (not entirely true--Greg totally got me through!). And then my breast cancer diagnosis came, and when I decided to be public with it, the outpouring of support was amazing. Much as now, with my leukemia diagnosis, people flooded me with notes and gifts and general good thoughts. I once read a quote that said simply, "Depression Lies." For me, that's exactly what it did to me during those three depressive incidents--it convinced me that I was useless and that no one needed me. But now, with so many people reaching out after my cancer diagnoses, even without some of those coping skills learned in therapy, there was no way that I could argue with the fact that someone needed me. A hell of a lot of you "needed" me--and cared about me. And there is no "depression" this time.

So my wish is that we, as a society, were able to do that and to be there for people who have mental health issues, too. For that stigma of saying, "I am depressed" or "I can't get out of bed today" to go away, and for us all to completely embrace people with mental illness like we do for physical illness. Because you know what? Those scary depressive episodes I had were worse than any of the cancer treatments I've had. And just as I know that no one would judge a cancer patient who is utterly exhausted by their surgery, chemo or radiation treatments, there should be no shame in being bed bound by anxiety or depression. A card, a note, a text, flowers, a visit, a gift certificate, a lunch date... all of these things that people did for me after my cancer diagnoses would have been helpful when I was struggling with depression, too. (Although I didn't know it at the time and certainly didn't share it.)

If you are dealing with depression, whether you feel you can label it or not, if you want to, please know that you can tell me. Because depression is a filthy dirty liar that makes you feel worse than any physical pain. And I will be the first to tell you what a horrible liar it is, and I would love to help you see your worth. You are needed. You are wanted. You are important. And you are loved. And there are better days ahead.

Surgery #3

I realize it's been quite awhile since my last post. Over two months, in fact--by far the longest I've gone since starting this blog. That, in itself, is a sign of how far I've come. :)

I went two months between visits with Dr. Shah (And it'll be 3 months before I see her again. More baby steps.). My repeat hormone tests solidified the fact that I'm in menopause, so I've switched from tamoxifen to Arimidex. So far, so good, though it's only been 11 days. :)  The reason for the switch is better severe potential side effects (tamoxifen --> endometrial cancer; Arimidex only--> osteoporosis), although anecdotally I've heard that the more-likely side effects are much worse with Arimidex (bone aches). What I've noticed so far is that I'm having very different hot flashes. On tamoxifen, I'd turn beet red and my heart would race. With Arimidex I just start sweating like crazy. (Oh, joy--and if you see me and go to hug me, you might want to remember that tidbit ;))

I also had my first booster shots for the clinical trial (which will be every 6 months for 2 years).  They take blood at each appointment, too.  So I got to make good use of my port.  As my friend Katie says, I ran into a vampire.

I'm psyching myself up for my third breast surgery. (If you want to re-live the others, my double mastectomy with ancillary lymph node dissection on 1/8/15 is chronicled here, and my surgical debridement and re-suturing on 2//15 here.)  This third surgery removes my expanders and replaces them with my permanent gel implants.   I decided 18 months ago to go with shaped silicone implants (called "gummy bears"), so that determined the type of expander I got.  If you want to see the difference between the implants I'm getting, regular silicone,  and saline, here's a photo:

I know I posted about it before, but the expanders that I have look like this.

They're uncomfortable not only because I can feel the metal valve used to add saline, but also due to their size.  I feel them under my arms, and they make things like bike riding difficult. 

Therefore this is the surgery I'd been looking forward to for over a year.  However, now that it's here, I'm a bit nervous.  I keep telling myself that I did just fine with a much more invasive, longer surgery and that this is just cosmetic.  But it's still surgery and as I read over my blog posts (and my private journal) from the first surgery, I may have forgotten just how rough it was!  I'm mostly afraid that I'll exacerbate my TMJ, which has gotten so much better after 6 months of wearing splints.  I don't want to un-do that!  

I'm expected to need two weeks to recover.  I'm hoping it won't take that long, but I've stocked up on reading material (our first 3 book club books now that we've re-formed):

And picked a knitting project:

I'm hoping I'll be up to visiting, and be able to resume walking quickly.

At any rate, all of you have been so wonderful with all the other crap I've had to go through. If you have a chance, send me some positive, successful-surgery-without-needing-a-platelet-transfusion thoughts on Tuesday.  Surgery is scheduled to begin at 7:30 am and last 4 hours.  Greg has said he'll post updates on Facebook.

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Other good stuff is happening.  I have enough real hair to have something done with it, so I did--got it highlighted and cut and then we had family photos taken, including some fun ones:

Travis turned 18 and graduated from high school. The time goes so fast.  I still wonder how this baby:

Became this accomplished man:

And finally, our remodeling project is done!  Photos (before and after) are on unpinkening.blogspot.com.  

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Happy summer, everyone.  Here's to speedy healing so we can still get some Festivals, Bier Garten visits, and beach trips in.

Herceptin (check)

Today I had my final (fingers crossed) Herceptin.  The last time I will be looking out these huge windows while having (life saving) poison pumped into me (fingers crossed).

Trusty infusion pump

Greg and I went out for breakfast and then he came to my appointment with Dr. Shah.

Almost last port access before it's gone

And then I had enough time to finish (and bind off) my bright pink shrug that I started so many months ago, also in the infusion chair.

It definitely needs blocking!

So a bit of catch-up since last time I posted (March 5th):

My MUGA scan came back at a good level.  The MUGA checks if the heart's ventricles are pumping at a correct level.  It's measured in percentages, and a score of 50% or higher is considered normal.  My score this time around was 61%.  The other scores, were 62% (pre-chemo), 56% (post-chemo, but mid-Herceptin), and 68% post-post chemo and mid-Herceptin.  Dr. Shah won't continue to monitor my heart, as she's very pleased with my numbers.

I had an appointment with my new GYN (my former one retired and I hadn't seen one for almost two years--which was when I was diagnosed with Endometriosis and put on birth control pills (which still make me wonder if that kicked my ER+ tumor into high gear, but I digress).  My GYN looked at my hormone levels and was pretty convinced that I am in menopause.  She supports the switch from Tamoxifen to Aromatase Inhibitors, but respects Dr. Shah's desire to re-test before switching me.  I don't have to be watched any more closely by the GYN due to the increased risk of endometrial cancer (unless I have symptoms), so that was nice to know.  Trying to decrease those visits any way I can--current count is 129 appointments related to my breast cancer diagnosis.

I met with my plastic surgeon and got the OK for my final (reconstruction) surgery.  It's scheduled for June 28th at 7:30 am.  It should last about 4 hours, then I'll be in recovery for about 2 hours and be able to go home (hooray!).  I will have surgical drains again (ugh!), but only two this time.  And I'm supposed to take 2 weeks off of work.  When pressured, Dr. Sterkin said maybe I could return earlier, but not until the drains are gone.  I have only (this month) earned sick leave at the rate of one day a month, and I've been withdrawing time for doctor appointments already, so I'm still a little down about having to use vacation time to sit home recovering from surgery.  Adding insult to injury, my surgery is scheduled for the day before Summerfest begins, so my plan to "do Summerfest" is dashed.  <whine, whine, whine>  On the other hand, the cool things about my surgery include not only getting rid of the uncomfortable saline-filled expanders, but also getting rid of my port-a-cath, and having my new breasts "rounded out" with fat lipo-suctioned from my belly!  (silver linings...)  I did check with Dr. Shah today, and while there is a (debatable) risk with procedures done to the arm after lymph nodes are removed, that doesn't apply to the chest.  What does that mean?  I'm clear to get tattoos after my reconstruction!

I spent a lot of time today talking to Dr. Shah about next steps.  In cancer circles, they call this phase "Survivorship."  It's common to experience changes physically, socially and emotionally.  It's common to fall into a depression of sorts when active treatment stops. Given my history of depression, I'm acutely aware of this possibility.  I definitely know that there is a chance of recurrence.  I am trying to decrease my fears of recurrence, and part of that was talking to Dr. Shah about what to do if it does come back.  My follow-up with her will begin in 2 months, including bloodwork and a clinical breast exam.  If all looks good, my appointments will gradually spread out (3 months, 4 months, 6 months...).  My greatest fear has centered around the fact that my tumors were highly Her2+.  That indicates an aggressive tumor with high chance of recurrence.  But if it does come back, I could go back on Herceptin (which I tolerated well), and there are other therapies that are being developed, targeted at Her2+ cancers.  Dr. Shah shared that she has one patient who's on her third year of Herceptin, post recurrence.  So there are options.

When I first sat down with Dr. Shah to discuss my treatment options back in February of 2015, she shared statistics with me about how likely it is to remain alive and cancer-free, depending on which treatments you chose (given my particular characteristics).  I remember barely listening at the time and just being determined to do everything possible to fight, even if it only increased my chances of survival a few percentage points.  I found that chart this last weekend, and then went to the website where (I think) she got the data from.  It's called Cancermath.net.  Now that I've already survived beyond that time of decisions, my numbers have improved!  :)  So for those who like stats, here's my survival curve, using the specifics of my tumor and the treatments I've done:

I like stats, and those are pretty good odds of survival for many years, in my opinion.  It cuts my remaining time approximately in half, but as I remember distinctly getting my diagnosis and not knowing if I had even a year left, these numbers are actually quite comforting.  I am planning to refer to them when I have my inevitable dip into fears of recurrence.

It was kind of sad to say goodbye to the nurses, MAs, and receptionists today.  I know I'll see some of them on and off for many years yet, but I don't plan to sit in the infusion chairs in the chemo bay for a long time (if ever again).  Today, for the first time in all my chemo/infusion appointments, a patient sitting next to me was ill--vomiting throughout his treatment.  It filled me with an overwhelming desire to bolt, but it also made me realize how truly fortunate I have been.  I have had so many visits and treatments and things done to me, and I have had side effects, and likely will always have some of them that remain.  But in the scheme of things, my treatments have been very well tolerated.  My side effects are annoying, and they linger (I'm talking to you, damn neuropathy!), but I've made it through the active treatments and I feel unbelievably lucky.  I've put up with things I never thought I'd be able to do (like a 45 minute MRI), and I've learned a lot.  I've learned about cancer, immunity, the nervous system, heart function, and hormones--and I've learned that I have the most amazing family and friends in the world.  Thank you all for reading, writing, texting, and hugging me.  I could not have done it without you.

Keep on keeping on

I know it's been a long time since I've blogged here, as a few of you have asked me when my next post will be.  I've composed a few little posts in my head over the last 6 weeks, but not really felt any of them were important enough to share.  But now there's a lot of little things.  

So this week marks a year since I started chemo.  It was strange to sit in the Cancer Center for my Herceptin infusion this week and think about that.  On one hand, it's been one looooong year.  On the other hand, it's only been a year since meeting all the oncology nurses and aides, and really getting to know them all so well (when you see them at least every three weeks, and as frequently as 2x/week, they become a big part of your life!).  

I had my third-to-last Herceptin this week on Wednesday.  If all goes well, my final infusion will be on April 13th.  I asked Dr. Shah if I could make an appointment with Dr. Lal on April 14th to pull out my port-a-cath and she laughed and told me she really prefers for her patients to keep them in for a year after treatment concludes (she didn't add the unspoken "just in case..." but I heard it anyway).  She said that she understood my desire to get rid of it, and if I really wanted to, I could get it taken out, but she recommended I see if Dr. Sterkin (the plastic surgeon) could just pull it out when he finished the reconstruction this Spring/Summer.  I have an appointment with him on March 21st, so I'll ask then.  

Several of my BC survivor friends are on aromatase inhibitors (Arimidex is most common) instead of Tamoxifen, as the early studies show that it is more effective, and without as many dangerous side-effects.  Tamoxifen can be used whether you're pre- or post-menopausal, but if you're still pre-menopausal, you can be given Lupron injections to essentially shut down your ovaries since Arimidex only blocks estrogen from non-ovary sources.  Dr. Shah and I had talked about me switching after about 2 years of being on Tamoxifen--to insure I'd gone through menopause and therefore wouldn't need the Lupron shots.  The more I've read about the aromatase inhibitors, the more I think it makes sense to get on them ASAP.  Studies have shown significant reduction of breast cancer recurrence in using them over using Tamoxifen, if you have cancer that's responsive to chemotherapy (If you don't need chemo, Tamoxifen is just as effective).  This is especially true in the first year (RR: 0.64 (0.52-0.78)) as well as in years 2-4 (RR: 0.80 (0.68-0.93)).  Furthermore, ten year mortality was also significantly lower with aromatase inhibitors (RR: 0.85 (0.75-0.96)).  All relative risks included for my Public Health friends.  :)  In addition, the already-known benefit of aromatase inhibitors is the decrease in endometrial cancers (RR: 0.33), though there is an increase in bone fractures over Tamoxifen use (RR: 1.42).

So I talked a bit more to Dr. Shah about it and since I will be 1 year LMP this month, she suggested they check my hormone levels to see if I'd gone through menopause on my own. She said that sometimes chemo causes reversible menopause, so she would want to re-check them in three months, but that almost gets me through the protection of Herceptin, so I feel okay about that.  I haven't talked to her yet, but I did get my hormone level results and they're pretty supportive of me having truly becoming menopausal:

FSH: 82.5 mIU/mL  (25.8 - 134 is indicative of being menopausal)
LH:  39.0 mIU/ml (pre-menopausal is 5-25; menopausal is 14.2-52.3)
Estradiol:  <5.0 pg/mL (pre-menopausal is 30-400; menopausal is 0-30)

I won't see Dr. Shah again until my last Herceptin (6 weeks), so I'm sure we'll discuss the plan at that point.  

As long as they were doing blood tests, she ran a CBC again.  Almost all my levels were good except for the platelets, of course.  They were 76 thou/mCL.  My hemoglobin is still low (11.7 gm/dL), but relatively high for me!  

Dr. Shah also scheduled me for my final (?) MUGA heart scan.  That's scheduled for the 21st.  Hopefully my score continues to climb and any potential heart damage from the chemo was reversed.

This week was also exciting because I was (again--third time's a charm?) discharged from OT.  As lovely as it has been to get a massage every week, I'm pretty happy to not have to make another trip to Water Tower Medical Commons.  I hit a kind of low point in February when the unfairness of having to use vacation time for my doctor appointments hit me (I don't have any sick leave yet).  In Grad School, I had tremendous guilt about taking any time off, so I'd planned to actually take a vacation after graduation, and then recovery was much rougher than I thought it would be, so very little fun was had.  Now I have a full-time job with paid vacation and I didn't plan to use it to attend medical appointments!  I shouldn't complain, because on the other hand, I *have* vacation time, so I can still be paid while seeing the doctor, the dentist, the OT, etc.  Many others do not.  I will finally have earned that sick leave about the time my appointments switch over to "infrequent."  Here's hoping I get to bank almost all of that earned sick leave.  :)

~~~~~

I have to admit that my goal of increasing exercise has not come to fruition.  Even yoga hasn't happened, although much of that is because things keep popping up on Wednesdays.  I am telling myself that as the days get longer and warmer, I will be more inclined to exercise outdoors (I already know I hate indoor stuff).

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The rest of my time has been spent on something terribly exciting: remodeling the house!  When we moved in about 15 years ago, there were several things we wanted to change.  We then switched into more of the crisis reaction--replacing things as they broke and had to be fixed.  Now that we're in more of a normal routine (that is, two incomes, healthy :)), we started to look at some things we could do to fix up the house.  Fortuitously, interest rates are crazy low now, so we're refinancing and taking out money to re-do a bunch of stuff all at once.  I'm blogging about it (very simply--mostly just photos) at http://unpinkening.blogspot.com.

~~~~~
Other than that, we've been having lots of fun.  Cara was home all January and then came back last weekend to see Travis in the HS production of Grease!  It's my favorite musical and it's a FABULOUS production.  I've gone four times.

This week Mira starts practice for the Middle School Musical--Shrek.  I love our school district and all that they do.

And it's March.  That's almost Spring, right?  

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.

~~~~~

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.

~~~~~

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...