Saturday, July 21, 2012

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 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.

Friday, April 27, 2012

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.

Friday, April 6, 2012

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.

Friday, February 10, 2012

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.

Friday, January 6, 2012

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.