My Body, My Science Project

First, I must apologize for taking so long to give follow up information.....but, here we go...

August 15, 2012
This is the day that I went back for another internal ultrasound (or as I liked to call it a "date with an ultrasound wand") and as an extra bit of fun, I got to have a biopsy to make sure that none of my "accessories" were leaning to/ or were cancer.

The good news is that the biggest cyst was gone as well as the other "cyst friends" on each ovary. There were also no polyps or abnormalities seen this time. My endometrian lining had decreased from 18mm to 6mm. My right ovary was now listed as "normal" and my left ovary had reduced in size (heading toward normal). The most important news was: no signs of cancer... and I wouldn't need another "date" with the ultrasound wand for 6 months.
Obviously I was very excited and relieved by this news! The gamble had paid off!

The gamble you ask?
Tamoxifen vs No Tamoxifen, that was the gamble. All these new "accessories" in my uterus and ovaries had appeared during the 8 months I was taking Tamoxifen.
(details in previous post: "Less is More: Tamoxifen 'accessories'" --- the link is below)
http://elizabethssoapbox.blogspot.com/2012/07/less-is-more-tamoxifen-accessories.html

Some people would say put up with these side effects because it could likely keep me from getting cancer again. Some other people might say that the side effects were too great - not balanced with quality of life.
My oncologist is trying to get me on the other breast cancer drug (that would require shots to put me in early menopause so I could take that drug) and I have said NO. Would you agree to that?

Maybe I am one of those people that have extreme side effects to medications. Maybe other people take Tamoxifen with no problems (other than the usual side effects: hot flashes, night sweats, weight gain, bone density issues, possible vision problems). Whatever the case may be, I stopped Tamoxifen after 8 months. The side effects were more than I bargained for and the phrase "quality of life" means a lot to me.

As I always say, my decisions are not for everyone and no one should make decisions about Tamoxifen based on what I write.
I do know what is right for me  - my body became my science project - and my gamble paid off.

Less is More: Tamoxifen "accessories"

I jokingly call the the new things I have acquired "accessories". The new things I have gained came out of nowhere over the last 8 months. I didn't ask for these accessories nor do I want them.

I started taking Tamoxifen in August 2011. I got "lucky" at first and didn't have the weight gain and hot flashes that some people do. What I didn't know is that my normal/ typical uterus and ovaries were becoming an internal farm over those 8 months. At first it was only irregular periods, but they never got regular - that's when my gyn stepped in and set me up for a pelvic ultrasound.

If you never had a pelvic ultrasound, invasive is putting it mildly......you could say I am dating an ultrasound wand at this point. I "get" to have these dates every 6-8 weeks to see how the accessories are doing and if there are any new additions.  At first, there was only 1 cyst on my left ovary and an 8mm thickening of the endometrial lining. At my next "date" this one cyst had become 2/complex cysts, the left ovary was enlarged and there was a new cyst on the right ovary.
Clearly, this was not going to resolve itself as my gyn, and I, had hoped. 

At the following "date" night, I learned that more accessories had been added to my collection. I now had the 3 cysts (still there and slightly increased in size), an additional 10mm thickening of endometrial lining (for a total of 18mm), polyps and a fibroid in my uterus. 

I struggled to understand how my perfectly normal uterus and ovaries had turned into a dumping site for extra pieces and parts. I didn't have these things before I started Tamoxifen in August 2011, but there I was in June 2012 over accessorized.

In fashion, we are told to stop and take off one piece of jewelry before we leave our homes - because less is more. In my case, removing an accessory wouldn't be that easy. 

I ask for all the options. I was given the "wait and see" approach, possible surgery (loss of both ovaries) to remove the cyst if they became too painful and changing breast cancer drugs (requires shots to throw my body into early menopause so I could take the post-menopausal drug). Obviously, none of these were very exciting. 

After some serious soul searching, praying and ice cream, I decided to stop taking Tamoxifen. I told my onc and gyn about my decision - they were sort-of ok with this. My onc wanted me to say "hold off" on Tamoxifen as opposed to "stopping" Tamoxifen. I will still have my regular follow up appointment with my onc in October 2012 and we'll talk about this more.  
(side note: I am so happy that I have a great team at the hospital. They are supportive of my concerns, ideas, questions, etc. I'm sure they figured out early on that I was not a "follow standard protocol without a million questions" kind of girl) 

The last day I took Tamoxifen was June 28, 2012 and as of today, July 21, 2012, I feel good. I no longer have pain in my ovaries (one day one side, next few days the other side), no longer have spotting everyday (pantiliners should never become your best friend) and all that bloating in my abdomen is decreasing.
My hope is that on my next date with the ultrasound wand, there will be no new accessories and possibly some shrinkage of the current ones.

I'm not sure what the future holds but I do know that I am comfortable with my decisions. My choices are not for everyone - and should not be for everyone.
I also know that I am tired of "dating" an ultrasound wand.

Year to Date

April 22, 2011 - day of surgery

April 21, 2012 - ran my first 5K  (ok, I had to walk parts of it)

Happy Anniversary to Me!
Never thought I'd be faced with breast cancer and I really never thought I'd run a 5K but I've now done both.

It takes about 40 minutes to complete an MRI of your breasts. It took me 41 minutes to complete the 5K.

There have been many ups and downs, but I must admit I'm pretty proud of myself. I couldn't have done this alone - my friends were with me from diagnosis to the last mile of that race.

Happy Anniversary to Me!

It's been 1 year! Happy Anniversary to me...or maybe it should be to my boobs!

I had a yearly mammogram (like everyone should) in March 2012 and there were no signs of cancer or any questionable things in either breast. Hooray! Made it! Diagnosed on March 28, 2011 and no new cancer as of March 31, 2012!

I think I'll celebrate more on April 22, 2012 which will be one year since my surgery.

I know that my treatment decisions were not the norm, but they were right for me. I am happy to celebrate the path I choose.

187 Days Down and 1638 More To Go

Yes, the tamoxifen countdown continues - I'll eventually get to 5 years. I promised in a previous blog to give updates on my "tamoxifen journey" so here's the latest:

I had managed to squeak by those first 25 days with little to no side effects, but that has changed.

Single..good or bad thing? Who can say at this point?
If you were in a relationship when you started tamoxifen and then starting having night sweats would that be easier for your partner to understand?
If you were single when you started tamoxifen, how do you tell someone "oh by the way, I may or may not wake up drenched in sweat and I hope you are OK with that"?

I was single at diagnosis and I am still single and I do not have answers for these questions. I keep getting information from "agencies" that want to help with the post-surgery getting on with your life stuff...and they keep including topics about sex, dating, relationships, etc. I have not attended. I'm not sure that some person leading a group can tell me how to address my scars, my one boob that feels like an implant and the tamoxifen side effects to a person I may become involved with/ start a relationship. Yes, I can hear the comments already, "well, if they truly care about you none of this will matter". Well, how the hell do you know that?

I did not have hot flashes. I did not gain weight. I did not have night sweats until the last few months. There is also this weird "sonar ping" like thing that happens in my calves. I've seen my oncologist, general physician and had an ultrasound of both legs, but there is nothing wrong. I know that these weird sensations did not start until I was taking tamoxifen. I am learning to live with it - it doesn't hurt, it's just strange. I have figured out that I need to keep calcium, potassium and sodium levels "high" to help this sensation from occurring as often (note: "high levels" to me, may be very bad for someone else - I've always needed to add salt to things to keep the level right).

Is there anything worse than going back to "teenage periods"  - when the length of time between periods varies, one time heavy, next time not, maybe spotting only, cramps....
No, this part has not amused me. I keep hoping that my body will adjust and things will get into a pattern, but until then I must go with the flow so to speak.

If taking tamoxifen everyday for 5 years will lessen or stop my chances of developing another breast cancer, I'm all for it. I'll keep taking that pill everyday and be thankful that I can.

Eight Months Down

April 22, 2011 - day of surgery
December 22, 2011 - day of follow up: MRI and mammogram, appointments with oncologist and surgeon
December 23, 2011 - phone call results: huge sigh of relief; all tests were good/clear

It was exactly 8 months to the day from my surgery that I was back in the hospital for that MRI and mammogram. (yes, normally these things are done about 6 months post-surgery but if you change jobs or insurance that doesn't work out......and that's a whole different blog topic).
I never expected to be so scared, nervous or anxious at the MRI and mammogram. I felt fine and everything looked fine, but the wave that hit when I had to get in that hospital gown was unrelenting. I couldn't decide if I wanted to cry, scream, laugh or what...I never expected all those feelings and fear. Yes, fear - shear, unadulterated fear!

The "what-if" wheels started turning.
And I couldn't stop them.

Then I remembered what my brother said to me when I was deciding about chemo, "will you look in the mirror everyday and wonder if you have cancer?". I told myself no back then and I told myself no as I was rolled into that MRI machine and again as the radiologist reviewed my mammogram results.
I left the hospital feeling shaky and a little unsure, but the phone call the next day relieved all of that.
I don't need another mammogram until March 2012 and no MRI until December 2012.

I'll still see my oncologist every 3 months and I'll still take Tamoxifen everyday and I'll be grateful everyday.

Dear Lingerie

I am so glad that I no longer have to look at you in the drawer and move you aside. I can take you from the drawer and wear you. No longer am I bound to plain, beige, no underwire, full coverage  items or sports bras. How have I missed you....let me count the ways:
demi cup
push up
lace
underwire
delicate straps
colors
cleavage
invisible straps
front closure
sexy

The day has finally come - it took months, but now ugly and plain are out of my life and you, lingerie, are back. Not only have you brought variety back to dressing, but you have given me back my confidence and feeling of normalcy. Thank you for waiting patiently in the drawer for this day!