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!

25 Days Down and 1800 More To Go

My Tamoxifen countdown clock started initially to wait for possible side effects. My oncologist told me that if I did not experience side effects/symptoms within the first two weeks of starting the medication, I was unlikely to have them at all.

I think I made it through the two weeks OK. I did not gain any weight, but I was mindful of diet and exercise (and continue to be so). I'm not sure if I had a hot flash or not...it was hard to tell in the heat of the summer. Was I hot  all of the sudden because I carried three bags of groceries up my 43 stairs or was I having a hot flash? Was I hot  all of the sudden because I was at work and lifted things or was I having a hot flash? Could it be that it was psychosomatic? I think the answer to this question can be found in the coming winter months.

I haven't had any unusual joint or bone pains which I have read about in other blogs and websites; however, I do see a chiropractor regularly. Maybe having my spine checked, adjusted and completing the PT exercises assigned by the chiropractor are keeping them at bay. Maybe I haven't been on Tamoxifen long enough for the bone and joint pain to start. The answer to this question may take 365 days longer to find.

No, I haven't been rushed into menopause - not yet anyway. My oncologist said that Tamoxifen can change my periods. She said that I could stop having them, but still be ovulating. Is that such a bad side effect? Yes, my period was earlier and different than normal but will that happen again? (If this is too much personal info, sorry, but I made a decision to tell it all).

There is a lot of articles and blogs out there about Tamoxifen - good, bad and the ugly.
This is just my experience of the first 25 days with Tamoxifen.
I'll keep the countdown going and share the details.

Music + Event/ Person = Memory

I can capture many moments of my life by songs. For some reason, I inexplicably link music to certain people and events. I can hear a song from high school and tell you exactly who I was with and what I was doing. Sometimes it's the song that reminds me of a person in general and not a set event with that person. I thought a lot about this the past week and wondered what sounds would be linked to my breast cancer so I decided to make a list of my my music memories and share them...


"The Boys of Summer" by Don Henley = J.O. (no, not going to list full names - just initials)
Lenny Kravitz, Outkast, Steely Dan = M.D.
Stevie Ray Vaughan =  J.K.    (and later = J.Ha.)
Prince and Raphael Saadiq = F.J.
"Roadhouse Blues" by the Doors and "The Thrill is Gone" by BB King = J.Hi.
Madonna = D.S.
"Beautiful" by Christina Aguilera and Pussycat Dolls = M.C.
The Doors, Kelly Clarkson, Black Eyed Peas and N.E.R.D = R.W.M.
Ice-T, The Gap Band = G.B.
"Pour Some Sugar on Me" by Def Leppard and "Welcome to the Jungle" by Guns N' Roses = D.S.J.
Disco songs = B.W. and H.L.
Mozart's Requiem = D.M.  


I think this list could go on and on, but the song that sticks out is one my brother introduced me to during the breast cancer saga. We were on the way to see the first oncologist about treatment plans, etc and I was nervous. My brother could tell and he played this great song in the car on the way to the appointment. The name of the song has become a little message of positive energy and hope that we now occasionally text to each other. Mike Doughty's "Lord, Lord Help Me To Just Rock Rock On" is the song.


Not sure what Mike Doughty meant with his lyrics, but to me the song says keep going, you are not alone and you can still be the fun rocker chick you always were - and I am going with that!









 

Dear Birthday

I had high hopes. I have always enjoyed my day o' birth and celebrated you with parties or events. 
This year - nothing. Why did you let me down?


Wasn't this birthday suppose to be special? Wasn't it suppose to mark more than a new year? The surgery was done, the radiation treatments were complete and all before your day. Wasn't this birthday going to be a line in the sand so to speak?


I realize that last year on your day you had no idea what was coming, but couldn't you have pulled something fantastic together for this year?  Ok, maybe because you fell on a Monday the day was just blah, but that doesn't explain the weekend before or after your day. 


I'll admit that I had envisioned a happy kick-ass type of day. A day that said, "step aside the birthday girl is coming through and she won't be stopped". Birthday, you felt no different than any other day and I believe that you should have!


I purposely gave myself some weeks off to help mark your day. I finished radiation and then waited to see the oncologist and start Tamoxifen until after your day. I wanted some days without cancer in my vocabulary as a present to myself. I got those, but I didn't get the special day or the special day feeling I believe you owed me.   


I have decided to take responsibility for your day. I am giving myself August as a birthday do-over month. To kick it off, Team C Cup pulled together a belated birthday dinner party which was great! It's only August 5th, so there are several days left to recoup what I think I missed on my day of birth.


I'm glad that Alice taught us about the Unbirthday Party.

Was I Born This Way?

"I'm on the right track baby
I was born this way
Don't hide yourself in regret
Just love yourself and you're set
I'm on the right track baby
I was born this way"   Lady Gaga


But was I? Was I born this way? Born with cancer already set in my path?


I'm a big Lady Gaga fan and "Born This Way" is one of my favorite songs. I love the message and power behind it. As I was singing it in the car one day, I wondered if on the day I was born cancer was already there or did I or the environment do something to make it happen. 

The funny, or not so funny, thing is that I may never know. I tested BRCA 1 and 2 negative, but there are still genetic links yet to be discovered. Breast cancer wasn't a big issue in my family history - my maternal great grandmother had breast cancer. And until March 2010, no one else did and then my mother was diagnosed. Due to her age and the one person history, her cancer diagnosis was not attributed to a genetic link and she was not a recommended candidate for genetic testing. If she had been younger at diagnosis, a genetic link would have likely been discussed further. My mother is doing well now (after chemo, mastectomy and radiation treatment).

When I went in for my yearly mammogram in March 2010, I had to add my mother's diagnosis to my family history. It was tough to say the words and difficult to accept what that really meant - that I was now one of those people and breast cancer was very close all of the sudden. I got a call a day later that there were some spots in the mammogram - likely cysts- but I had to come back in for ultrasound. The ultrasound showed only cysts and nothing further was needed or recommended. I felt like I had dodge a bullet. I'd never had cysts show up before in a mammogram, but they were there. I couldn't feel them, but I could see them on the ultrasound.

The next thing I knew I was giving myself breast self-exams every other week.  

As the months passed in 2010, I was able to help my mom through surgery, treatment and recovery. I also began to think, that maybe I wouldn't get breast cancer. My mom wasn't in great health prior to the diagnosis, but I was doing well health-wise. So maybe it was possible.....

In March 2011 those ideas were dashed and I was diagnosed with breast cancer. It seemed weird and freakish that almost exactly one year later, I got the diagnosis. I wondered if it was environmental because mom and I shared the same house for 18 years (and visits from college, etc). I wondered if it was genetic, but my maternal grandmother doesn't have it. Did breast cancer skip a generation and I was a fluke? (I don't have children so that was a safe go-to thinking) 

When will we know? How we will know? Will we ever know?

I don't question everything I ever ate or drank or every place I ever visited. Maybe it is a genetic link, maybe it's not.  Breast cancer is just a small part of who I am, but not what I am. 

I was born with my hazel eyes, curly hair, love for music and sense of humor which all are attributed to my parents' gene pool. I was born with my personality and outgoing spirit which I like to think I enhanced from the gene pool. I was born with an open mind and willingness to accept others as they are which didn't necessarily come from the gene pool. 

This is the way I was born.

"Just love yourself and you're set"  Lady Gaga