"Ch-ch-ch-ch-Changes" (posted, removed and re-posted)

Today is "Birthday Eve" for me.

Last year's birthday (detailed in my November 23, 2013 post) was so much different than the one I'll be having tomorrow.
Last year I was a month out from my 2nd surgery, on an amazing first date, loving my job, in good shape and enjoying being an aunt to my then 3-month old nephew.
This year I am 13 months out from that 2nd surgery, single with no prospects, in need of new job, 20 pounds heavier and my 15-month old nephew lives in another state...and I am running out of "give a cares".
Somewhere I lost that thing I had that made me do yoga, exercise, eat well, socialize in public places and give a care (aka give a shit).

Pity party? Table for one?

I need a new job and have been struggling to find a new job. I knew it wouldn't be easy, but when the thing that you have done for over 17 years doesn't see you as qualified it sucks! I've been in the same field, in different arenas, for all those years, but my Bachelor's degree is in the "wrong" field and my Master's work doesn't count because it too is in the "wrong" field. Oh, and let's not forget that I do not speak a 2nd language. I did start my career at the bottom, I did work hard and I worked my way to promotions.
I'm "over qualified" for some positions so I've been told, don't have the right degree for others and loose points because I don't speak Spanish. I just wish all those years of work counted for something - the things I learned at work, in my 3 jobs over those 17 years, cannot be taught in a classroom, but that doesn't seem to matter.

I am not giving up; however, I have put a time limit on my job search - if I don't have a new job by a set date, I'll will end up moving (yep, move in with my brother, sis n law and nephew several states away from here). Choosing to move and having to move are two very different things. My brother has been telling me to move in with them since the day they drove away with the moving truck - as he says, there is a bedroom waiting for me whenever I want it.

To make all this even more interesting, I have not told my brother, parents nor many friends that I am miserable and need a new job.  I am not happy about my situation and I'm trying to hide it as best as I can. Trying to explain to my family that I choose to take another job, instead of leaving and moving in with my brother, will likely label me as "selfish". My brother once agreed with my mother that I was "selfish" and then he told me about that conversation. It was years ago, but I can't get it out of my head. The thought that my brother did think/ would think I am selfish is a very unpleasant weight that I carry.

So I am waiting....for a phone call with a job offer, for my "give a cares" to come back, for my stalled life to get started again and for a glimpse of the big picture that is supposed to be mine.

Is this where I should say, "well at least I have my health"?

My last mammogram was clear, but I did not do the yearly MRI this time (detailed in my March 9, 2014 post). Since I'm trying to find new job, I'll likely be without health insurance for a month or more so I won't be doing this year's MRI or any other medical appointments.  Hopefully, I'll have a new job that provides health insurance without a long wait time/ probation phase then I can make up for the missed appointments (MRI and gyn).

I guess, in a way, I just listed all the things I don't have, but here's what I do have:  a roof over my head, food, enough money to make ends meet, new job prospects, a family that cares and the most amazing and supportive friends!

Maybe tomorrow morning, my birthday, I'll wake up to find my that my "give a cares" have come back and there will be good news and a new start for this year.

A girl can dream...........

(This entry was originally posted on July 24, 2014, but a few days later I removed this post. I'm not exactly sure why I did that, but this is a part of my story so it seemed only right to re-post it - the good, the bad and the ugly. --  October 11, 2014)
  

Update: That Other Shoe That Dropped

June 2013 brought me the "thud",  the "other shoe that dropped"......for those of you who have not seen my that July 21, 2013 post, it was all about the surgery I needed due to Tamoxifen side effects.
The short re-cap goes like this:
June 28, 2013, I had surgery to remove my left ovary and left fallopian tube (with the caveat that if anything biopsied during this surgery was cancerous, I would have a complete hysterectomy).  I woke up with the left ovary, left fallopian and the right fallopian tube gone. Thankfully I had managed to hold on to my right ovary and uterus because there was no cancer found in the biopsies that were done during the surgery.

Two weeks after the surgery, I had the typical surgical follow-up appointment and then six months later I had a regular gyn exam with all the usual tests. During this six-month appointment, I mentioned to my obgyn that I was having pain (which ranged from short and tolerable to sharp, shooting and repeating pain) on my right side in the ovary zone.
Now, as you can imagine, I keep notes - with dates, details, descriptions -  as I am now even more sensitive to whatever it is that I perceive as a change in my body....or something that just does not seem right. 
My obgyn heard all my concerns and notes and recommended a "date with the ultrasound wand".

On February 24, 2014, I went back to the hospital radiology department (a place I already felt I was too familiar with) for the internal vaginal ultrasound. So there I was, clothes on my top half, paper "blanket" on my bottom half and my fabulous patterned knee-socks as I lay there in a rather vulnerable position. I was nervous and switched between moments of concentrated quiet breathing to talking incessantly to the radiology tech. The tech was doing her job and I was watching her face like it was a poker tournament and she had a tell and a pile of poker chips.

In my head I started a silent chant...."save the right ovary, the only ovary, save the right ovary, the only ovary". Oh, and in case you were wondering, it is very difficult to relax and let someone insert that ultrasound wand and do their job. After it was over, the waiting game began - there is this part of you that wants to know the answer/result, but there is also that part that would rather not know the findings.

A couple of days later I learned that the right ovary had a cyst and that at this point it appeared to be a typical cyst that would resolve on its own. I was told to keep tracking any pain that I felt and that I'd need another date with the ultrasound wand in six months. Then my obgyn says that if the pain changes, continues or is not in line with "girl math" (aka  the halfway point of my period), I will need to have another ultrasound sooner than the six-month date.

I am sure that there are people out there that would have said "take it all" on the June 2013 surgery date and just be done with it, but I am not one of those people. I know there is a chance that I could end up having surgery again and having the right ovary removed, but it is just a guess...a chance...a possibility.

The one thing I am sure of - the one thing that has not let me down yet - is trusting in my body and doing what I believe is right for me.

If I had followed the typical course of treatment/ recommendations:
1.  I would have had chemotherapy after my breast cancer surgery (on the off chance that a 3mm spot in one of three lymph nodes biopsied had shot cancer cells out into my body somewhere) in conjunction with the radiation therapy that I did have.

2.  Instead of just having both fallopian tubes and my left ovary removed,  I would have had a complete hysterectomy. The complete hysterectomy, per the Drs, would lessen my chances of ovarian and uterine cancers and would allow me to take the post-menopausal breast cancer drug without having to have shots to put my body into menopause (because the pre-menopausal breast cancer drug - Tamoxifen- had too many side effects for my body which actually caused the need for the surgery to remove my left ovary and fallopian tubes in the first place --oh, and don't forget that I am unable to take hormone replacement therapy because I had estrogen receptor positive breast cancer)

I truly shudder to think where I could be and what condition I may be in,  if I had blindly taken the "typical routes" recommended to me.
I did my research and I trusted my body - I trusted how I felt and what I felt.
Because I made these choices, I still have a monthly period, I do not have a hormone replacement issues and most importantly, I still feel whole.
 

Struggling with Balance

Balance is something that has been on my mind for a few months now....
  work and life
  family and self
 one boob larger than the other...

It seems that for some reason I cannot have balance with any of these things. For instance, if I am dating someone and things are going well in my personal life, then work life may suffer. If I am single and not really looking around, then work is my life and I spend too much time in my office. It seems like I submerse myself in whatever is going on at the time and loose focus on the other half - either work or life.
Why does it have to be one or the other?

On December 3, 2013, I had my yearly mammogram - even though I have moved from the six-month exam to the twelve-month exam,  it still causes me to come close to a panic attack when I put on that hospital gown that opens in the front and never really covers you well. Once you have been diagnosed with breast cancer, there is nothing that compares to that feeling of going back to the mammogram machine. And, because "breast cancer" is on my medical history form, I have to set my mammogram appointments when there is a radiologist  on stand-by to immediately read my test results and decide whether they need more pictures or an ultrasound completed. I am very open with the person doing the mammogram about my nervousness and I generally try and make jokes (because that's just what I do). The time between the tech leaving me alone in the exam room, the radiologist reading it, making a decision and the tech coming back to me in the exam room feels like longest hours ever - but, it is really only about fifteen minutes.
I passed that test with an "all clear", but that leaves the now yearly breast MRI to be done. My last breast MRI was January 16, 2013 and I am overdue. Every time I have a breast MRI, there is wrangling between my surgeon's staff and my insurance company. The surgeon's office "wins" and my insurance approves it and within a week, I am boobs down in an MRI tube for about 40 minutes. The results for this take about two days, but it also comes with a huge bill from the hospital. My health insurance pays about half the cost and I get billed for approximately $1,200 for that one MRI.
And here we are at balance again, do I just take the mammogram at its word, not do the MRI and not have more dollars added on to my hospital tab or do I stay in debt and have the MRI?

It is not like I am going to forget I had breast cancer or get lackadaisical about exams - I have daily reminders since one boob is bigger than the other and I have scars, but when is there balance? When does the fear and the practical follow up, level out? 

On yet another balance front..........my brother and his wife have been the only family near me for the last six years. I now have an 11-month old nephew (who is amazing and I could not love more) which has made the recent change even more difficult. My brother and I have always been close and his wife has become like a sister to me, so when my brother got the "job offer of a lifetime" the end of November 2013 I could feel the scale tipping. My brother started his new job in January 2014 and flew back home every other weekend until he could find a home, etc. for my sister-in-law and nephew. I thought I had more time to balance things mentally and emotionally before they all moved, but that was not the case. They moved back South the first weekend in March 2014 and it has been very difficult and sad. I am happy for my brother and his family, but I am crushed that he is no longer an hour car ride away for the weekend visit, movie and hanging out time.
My brother got a house with enough bedrooms for one to be mine (or to be used as a guestroom). When he told me about the house, he was careful to explain that "my" bedroom was on the lower floor so I would have my own entrance and privacy. He and my sister-in-law were very clear that I was welcome to move in with them this month or down the road - as my brother said, "there will always be a room for you here".
I stayed. I am now a two-hour plane ride from them.  Some days I wonder what the hell am I still doing here and other days I think I should stay.
And there is that balance thing again, do I walk away from what I have here to be with family or do I stay and try to make a life for myself?

Balance in life, work, health, family and relationships is clearly something I am going to continue to struggle with.....I guess I would just like to see a balance in one area.....
but, I do not even know which area that would be.......or what balance may even look like.

The Birthday Goal

Surgery was June 28 and my birthday was the end of July

I wasn't tip-top, back to normal on my birthday, but I did have most of my strength back. I could manage a full-day at work without feeling like I was 90+ years old at the end of the day. I had gotten up to a 1 mile walk (before I felt weak and my insides started feeling pulled and tight). I still could not do ab workouts and I had to be careful with the yoga and certain positions were off limits.
So, basically I was doing pretty well and I was able to go out and celebrate my birthday!

What I didn't plan on was looking pregnant for a few weeks and not having any clothes that fit. I had not gained weight from eating, but I was still holding fluid from the surgery. It seemed that my ab area had become a canteen and my body thought I was in the desert.  My ob/gyn said that the fluid should have been absorbed (dealt with) by my body by the time I saw her for post-surgery check up two weeks later; however, par for my course, that was not the case. She did give me a prescription diuretic. I took one pill that night and was practically a new person the next day.
My pants were no longer squeezing the breath out of me, leaving marks and the pressure and discomfort in my ab area was greatly reduced. Now, I really was feeling better.

I did have a great birthday - one that I won't forget. I went on a first date. I met someone a few months earlier and we had been talking and texting almost daily, but had not yet been on a date (oh, I should clarify - he lived out of town, so we couldn't see each other without advanced planning).
He decided that he wanted our first date to be on my birthday. I thought it was a bold move and I liked the fact that he was up for the "challenge" of my birthday and first date happening simultaneously.
Highlights: good restaurant, bourbon tasting, talked for hours, stayed in the restaurant for about three to four hours and had no idea we'd been there that long, great kisser.

You can't predict how or when you tell someone that you've had breast cancer surgery and a surgery where you lost one ovary and both fallopian tubes. You don't know how they'll respond or what their reaction will be to this information. It's not like I run around with a billboard that screams "I had cancer and two surgeries". I have told very few people (yeah, I realize how odd that may seem when blog about my cancer experience) and I don't tell unless there is a really good reason to share.

If there is a possibility of an intimate situation occurring with someone, I have to tell - can't hide it. And, I have shared the news ahead of time and not waited until some awkward pause in the "heat of the moment" so to speak. For those of you keeping track, the guy I mentioned in the April 2013 entry, Extra Extra: Good News, had gone to "friend only" status. After several months it was pretty clear that it wasn't going to work out between us - moving on.....
The "birthday first date guy" and I continued to see each other and things seemed to be going well.

November brought the end of that relationship, emotional and stress eating, very busy time at work and the year mark for my mammogram.
Things start and some things stop and some things are a cycle............

"THUD"....the sound of the other shoe that dropped

I was hoping there would be no other news flashes, changes or "shoe dropping", but it  happened. On June 5, 2013 I had my follow up pelvic ultrasound (aka my "date with the ultrasound wand" as I call it).
That ultrasound led to many doctor appointments over the next several weeks and then surgery.

Although the majority of the Tamoxifen "accessories" I had gained during my 8 months of taking that drug had resolved, the left ovary was not returning to normal and that complex cyst was still there. The right ovary was fine and other things looked more normal, but the left ovary was very concerning. My ob/gyn recommended that I have surgery to remove the left ovary, left fallopian tube and biopsy the uterine lining to make certain that cancer was not lurking.

Needless to say, I was scared! My ob/gyn was calmly explaining the procedure, what would happen, etc and all I could hear was Charlie Brown's teacher's voice. The word cancer was on repeat in my head like a bad musac track from an elevator.
I went home and started a pity party for myself that lasted several days and included lots of crying, fear, anxiety and questions: "why me?", "what did I do to deserve this?" and "whose going to want me with no girl parts left and all the side effects that brings?".

We set the surgery date for June 28, 2013 and I prepared myself for the worst, but was praying and hoping for the best. I would have laparoscopic surgery under general anesthesia. The left ovary and left f tube would be removed, the uterine lining would be biopsied and all of that would have quick pathology done. IF any of those came back with cancer, then I'd have a complete hysterectomy (all my "girl parts" would be taken away). I agreed that I didn't want two surgeries so I signed paperwork that clearly stated to go ahead and do a total hysterectomy if there was cancer found.
Why wake up, hear the cancer word and then have to set another surgery date? No way. I decided to make it a "surprise" - which means I would not know if I had any "girl parts" left or another cancer diagnosis until I woke up in the recovery room.

Now this plan was finalized as far as I was concerned, but I was mistaken. There was one more decision I would have to make. I met with the gyn onc to review and discuss what would happen if cancer was found during my laparoscopic procedure. The gyn onc would be the one to step in and take the the procedure from three holes in my stomach to cutting me open and taking out everything and doing the staging (aka biopsying other bits and pieces in the surrounding areas to make sure cancer was not lurking somewhere else).
I was now hit with the new decision: if cancer was not found, why not go ahead and take out both ovaries and f tubes since I was already there under anesthesia and all?

This is where I began to fall apart - again. I had pulled myself back together (well, as much as I could) after agreeing to surgery and the original two options. Now, I had yet another decision to make: if there is no cancer found and hysterectomy is not needed, do I still give them both ovaries and fallopian tubes? In other words, do I say "yes" to surgical menopause without a cancer diagnosis?

The gyn onc explained, as my breast onc had previously explained, that not having ovaries could reduce my chances of a recurrence of breast cancer (I had estrogen receptor positive breast cancer). I'm not crazy, I had already said take out all the "girls parts" right then and there if cancer was found during the surgery.....but did I want to agree to give them parts that didn't have to come out?
It was being presented as a good news option......Hey, if you let us take both ovaries then you can start taking the post-menopausal breast cancer drug without having to take the shots to put your body into menopause....
I failed to see the "good news" aspect of this presentation. I had a lot of thinking to do and a huge decision to make in a matter of days.

I said NO to the extra donation to medical waste. I was determined to keep the right ovary and right f tube if there was no cancer! My gyn supported my decision (she is an amazing person and care provider by the way!). This way, I could consider taking the shots to throw myself into menopause and take the post-menopausal breast cancer drug. If the side effects from this drug were horrendous, I could stop the the shots and kind of come out of the menopausal state.  If I gave them both ovaries, there would be no turning back from a menopausal state. My age also played a part in this discussion - there was a chance that even if I stopped the shots, I wouldn't bounce back.

So here's what happened on my surgery date, June 28, 2013:
I woke up with some girl parts left, but not as many as I had hoped. My left ovary and f tube were removed as planned, but the right f tube looked suspicious so it was taken out too. I was able to keep my right ovary and uterus. Good news - no cancer found!

In case you need a quick biology reminder, no I cannot ever get pregnant now. Even though I knew that getting pregnant and having a child was probably not in my future, it was still possible - biologically possible, it could happen. Now, it cannot happen. This news was tough to digest. It was more difficult and upsetting than I had imaged. It is very difficult to go from "it probably want happen for me" to "it cannot and will not happen".

I am still recovering from the laparoscopic surgery (takes 4-6 weeks to regain 75% of your strength). The recovery has been more challenging than I expected. I grossly under estimated the healing and recovery time. I was comparing it to my breast cancer surgery - not a fair comparison by any means. I'm working back up to my 2 mile walks, morning yoga and ab workouts and I will get there.

Yeah, I'll get there.....I'll get there with my new normal, with decisions about future breast cancer drugs and moving forward with my life. Not having another cancer diagnosis is a major relief, but I still have to somehow wrap my head around what has happened to my body and come to terms with that.

Two years ago this month, I was happy that I had completed breast cancer surgery and my radiation treatments before my birthday. That was my goal two years ago - to have it all "finished" before my 2011 birthday.
Never thought I'd be here again. Never thought I'd be facing another "get well" goal before another birthday, but here I am.

Extra Extra: Good News

I have passed the two year milestone and I feel great!
I was diagnosed with breast cancer on March 28, 2011 and my recent mammogram and MRI have given me the "all clear".

But is there such thing as too much good news? I'm happy to hear that my test results were positive and there were no signs of cancer, but somehow during the last 6 months I started dating someone and last month my job life changed drastically for the better.
I'm not sure if I am finally catching a break or if there is some other shoe that is going to drop.

I couldn't be happier with my work and the people I work for and with - I'm glad to go there 5 days a week. I'm excited about this very special person in my life and it seems that things are going very well. So, why do I feel like at any minute I might hear the other shoe drop?

I don't  want to be a pessimist
but I think that I am more of a realist
and definitely an optimist in my work-life.
So, why can I just enjoy all this great news?

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!

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

But Wait There's More...

As a contestant on the Breast Cancer Life, you are still eligible for new health problems. Just because your surgery and radiation treatment are over, we don't want you to feel left out. Because you have had breast cancer you are automatically qualified for a higher risk of skin cancer and uterine cancer...and let's not forget the deep vein thrombosis in your calves. All of these things are available to you, just because you have had breast cancer.


But wait, there's more. If you act now, you can qualify for hot flashes, bone and/ or joint pain, swelling in hands or feet, vaginal dryness, decreased sex drive, headache, dizziness, depression and possibly thinning hair if you start Tamoxifen today. All this while still maintaining your premenopausal status.


Unfortunately, there is a limited supply of side-effects so you may not receive all of them but we guarantee at least one. And, don't forget the most attractive bonus - weight gain of 5-10 pounds beginning immediately after your first dose of Tamoxifen.  


If you act now, we'll throw in a set of ___________ (insert random infomercial product here) free with shipping and handling of just $9.99. 

To The Ladies of Zap

Thank you for everything you did each one of those 33 days of radiation treatment. Thank you for making a situation that could be uncomfortable and embarrassing easier to manage. Thanks for laughing at my bad anxiety driven jokes and always greeting me with a smile at such an early hour of the morning. 

Thanks for telling me my skin looked great, even when it started peeling and reminding me that my skin would bounce back. Thanks for answering all my questions - no matter how many times I asked them. Thanks for giving me the smallest radiation tattoos that can't even be detected.  Thanks for letting me choose the marker colors when you had to draw on my boob. 

Thanks for keeping your spirits up while watching all of us come and go all day in various states of healing and treatment. How you manage to do that everyday can not be easy. It's hard to understand the connection that is made between patient and zapping team, but it's there and it's strong. It's hard to understand the emotional impact that happens toward the end of treatment and especially on the last day. 

I will be forever grateful to each of you.

Grimace

Oh how I wish this meant Grimace the character, but it doesn't. It means grimace as in the facial expressions I try to hide.


They call them phantom pains. I call them mighty real! The sharp shooting pains in my boob where  healing from the lumpectomy is still happening. Not looking forward to these nerves reconnecting and healing over the next 10 months. Can't it please heal faster or at least without these pains that make you gasp for breath or make a face. 


Pardon me while I grimace...