Friday, September 7, 2012

What Would Tami Do?

For the last six weeks I've had a very pleasant and much-needed break from cancer.  Active treatment ended and I felt like I needed to move forward with my life.  I took naps.  I tended the garden.  I ran and did yoga.  I spent time rolling around in the grass with my grandchildren.  I gave my sister an ice-cream cake for her birthday.  I took apart my sofa and reassembled it on the other side of the living room.  Ken and I took a week-long vacation on the beach where we walked, read, napped, and restored our bodies and souls.

Another beautiful sunrise over Lake Huron
A lovely walk on a lovely morning
For a while, I actually forgot I had cancer.  How wonderfully sweet!

Today was my first three-month follow up with my medical oncologist.  It was good to see familiar faces and get many hugs; I was even teased about "dressing down" for today's appointment (alas, no Boob Fairy costume, which has apparently become a popular story around the onco's office).

What can be hard to explain is how difficult walking back into that office turned out to be.  Ken and I had a few minutes to ourselves before meeting with our favorite nurse practitioner Dianne - and I rather suddenly and intensely fell apart.  There is a specific smell in the oncology office that immediately hits your nose; I could instantly taste the "flush" of saline and Heparin injected into my port right before a chemo treatment.  I sat in one of the same rooms, in the same chair, where I had before been prepped and sat waiting for my hours in the infusion center.  And like a terrible waking nightmare, I flashed back to treatment and pain and sorrow and exhaustion and emotions I hadn't felt in months, and I fell apart, sobbing helplessly in Ken's arms.

But it was okay - because I needed to do that.  I needed to feel all of that to process that I was there, at that moment, because of all the work I had done before, not in spite of it.  That I am alive because of the treatment, and because of the wonderful treatment of the staff in the oncology office.  So yeah, cancer still sucks, but I'm still here, and today is another day to be grateful.  So I wiped away my tears, cracked a joke, and happily greeted Dianne with a hug and a smile.

The exam itself was a wonderful experience, and turned up absolutely nothing.  No lumps, bumps, worries or concerns.  Ken and I talked with Dianne about the pain and stiffness I've been experiencing since starting the Tamoxifen three months ago.  In particular my hands are literally arthritic; it is exceptionally painful to walk.  Getting up from a sitting position actually takes time because my back and hips hurt and are so stiff.  I have had to cut back on running because my knees hurt, and yoga has become a challenge.  I wanted to wait for a few months and see if the side effects abated, but as of this morning they were still going strong.  Dianne informed us that many women experience side effects on Tamoxifen, and it can take a year or longer to plateau and get better.

In a year, I'll be 50 - and I'll still feel like I'm 90.

I'm so not a science geek, but this is what I understand of Tamoxifen:  Some cancers have hormone receptors (they are "receptor positive").  These receptors become "active" when a hormone binds to them, and then the cancer grows.  Tamoxifen stops estrogen from binding to estrogen receptors in cancer cells, thereby keeping the cancer from growing (or coming back, so the theory goes).  For someone with ER+ (estrogen-positive) breast cancer, Tamoxifen can be a helper in keeping cancer from recurring.  It is a daily medication that is taken for five years.  It has a host of side effects, including hot flashes, joint pain, bone loss, mood swings - oh, and the increased risk of blood clots, stroke, and uterine cancer.

For someone whose cancer is highly ER+, Tamoxifen can be incredibly beneficial.  We learned, after my Oncotype test, that my cancer is very weakly ER+ (my score is 6.6, and 6.5 is the cut-off point for being ER negative).   After reading and researching Tamoxifen and weighing its risks and benefits, and exploring the significant side effects I've been having, Ken and I made an informed decision to take a hiatus from the Tamoxifen for six weeks to see how I feel.  We shared this decision with Dianne who supports us whole-heartedly.  It's possible what I'm feeling is simply a long-term side effect from Taxol, but Dianne believes it's likely the Tamoxifen and believes I'll start feeling significantly better in a couple of weeks.  She has asked that I come back again in six weeks to further discuss the decision, giving her time to gather more information and giving me time to see how I feel.

This is a good, positive and proactive decision - one that I am incredibly excited about.  After so many months of treatment, I have a new appreciation for quality of life, and Tamoxifen (or Tami, as we fondly refer to her around here) has been particularly disruptive in that respect.  Yesterday was my last Tami pill for the next six weeks, and I hope forever.

The only negative about today's appointment was the fact that I have continued to gain weight (another lovely SE of Tami).  Because estrogen is a fat-storing hormone, the more fat I have the more estrogen I'm battling.  So my promise to myself is that if I'm going to stop seeing Tami, then I have to also quit dating Ben and Jerry.  I can control the estrogen through medication, or through weight loss - one or the other, the choice is mine.

So my new mantra will be, "What Would Tami Do?" when I reach for those cookies, or that extra piece of cake, or that soft-serve ice cream, or a handful of M&M's (Godiva chocolate does not count...a girl's gotta have limits, ya know?).  It's a sacrifice I'm happy and willing to make, if it means I won't be 90 years old next year.

All is well, and all will be well. 

5 comments:

  1. I felt I was reading about myself as you described your first visit back - I also feel apart on my first visit wondering if something would show up and I would be back to square one again. It does get easier now you know what to expect and have had that initial reassurance. I also suffer fromTamoxifen effects which worsen the more I exercise. I am trying to shift the weight gain from chemo and Tami and it isn't easy, but I am going back to swimming as it is lower impact on the joints. Keep us posted on how you feel in a couple of weeks time. Catherine.
    PS Love your new hair. Please let us know if you get the curls too!

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    1. Catherine: Thank you so much for your kind words. I'm so glad to know I'm not the only one who felt this way when going back for the first check up! I really thought I was totally prepared and in a really "good place" and yet it was harder than I expected. Surprise!! :-) Thanks for sharing your experience; knowing that it gets better is so helpful and reassuring. It will make my upcoming mamm that much easier. And I think I *am* feeling a little better physically - now if I could only lose weight! And I'll keep updating my photo - I hope I get some curls!!

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  2. I have been trying to decide whether to start Tamoxifen for a couple of weeks now. I finished my chemo on August 17 and was told I should start Tamoxifen and take it for 5 years. I had the Oncotype and all that and knew my numbers and percentages, but was still wary because of the side effects. I am what my doctors jokingly call a "walking side effect." I have no family to discuss these types of decisions with so I go online, I read blogs and I ask friends who always respond with "We want you here for a long time, anything you can do to reduce your rate of recurrence is good, right? You should take it." So I decided to start when I get back from my little mini vacation this weekend. I hope my side effects are minimal but I had the weight gain from chemo, the horrible joint pain, the migraines, etc...so I am concerned but thank you for posting your perspective.

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    1. Nancebeth: "Walking side effect" - I can really relate to that. I'm sorry you don't have anyone close by you can talk with, but there are so many of us "out here" that I hope you find a wonderfully supportive community.

      If I can offer one piece of wisdom I've learned on this journey, it's that we ultimately have to do what's best for us. My children, my husband, my grandchildren, my friends - all want me around for a long time, and want me to do anything and everything I can to ensure that. But I also consider my quality of life as part of my treatment plan. When on Taxol I had horrible pain - but I knew it would be over in a relatively short period of time, and I knew it was a "big gun" in my treatment plan, so I felt like I could endure it. It was the same kind of consideration when debating whether to continue Tamoxifen. So take a moment every day to consider yourself in this equation; your thoughts and feelings matter.

      I will think good, healing thoughts and send prayers your way for an easy time on Tamoxifen - no SEs!! And please feel free to email me and keep in touch, let me know how you're doing. I'll be thinking about you. Good luck and take care *hug*

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  3. Lots of great information and inspiration, both of which we all need, thanks for all the enthusiasm to offer such helpful information here.
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