Friday, April 5, 2013

What a Difference a Year Makes


April 5, 2012 was the day of my first treatment of AC.  It was by far the most difficult day I have faced.  It was worse than the day I had my double mastectomy.  My life in an emotional impasse and the months of chemo and radiation stretched out in front of me.  Char was 6 months old, and the inspiration I needed to push through and get out of bed and keep going.

Happy April 5, 2013 everyone!!!!!!  It's a great day.  Just one year later and I am busy, busy, busy.  I have lots of plans and so many fun things to come.  Char is 18 months old.  She has a strong personality, beautiful smile that lights up a room, and is quite the talker.  I have been taking Tamoxifen for about 3 months.  So far, not a lot to report on that front.  I have temporarily stopped the Metformin trial at the recommendation of my nutritionist.  I had been losing weight and was looking a little too thin.  I had zero appetite, which was most likely from the Metformin.  I stopped about three weeks ago, and I have seen an improvement in my appetite  I have gained a couple pounds.  My next, and hopefully final, surgery is scheduled for 6/27.  Big question..................silicone or saline?  I am sure there will be a forthcoming post related to this decision.

Now, onto my super exciting news and what has been keeping me so busy on top of wife, mommy, work, and home.  Pushing Pink Elephants is being transformed into a non-profit.  I am working along side some wonderful ladies who are working tirelessly to get this organization off the ground.  We are so looking forward to all the great things we plan to do in and around Baltimore.  We are currently in the development/planning stages as we wait for our 501(c)(3) status to be approved by the IRS.  The mission of our organization is "to equip the community with resources to gain a deeper perspective about breast and ovarian health".  We will have a big focus on education and overall health that will hopefully be eye opening and empower change in the community.  We are working on our website and hope to launch soon so we can start sharing our plans in more detail.  I look forward to sharing more details on this soon.

I have been researching and reading a lot of books related to diet, health, cancer, pink ribbon culture, and the list of must-reads keep on growing.  I will say an eye-opening book I recommend reading is Pink Ribbon Blues by Gayle A. Sulik.  Although I did not feel the same on some of the topics covered, this is a great book if you are questioning why all the pink/awareness does not seem to be dealing with the issues about breast cancer.  I had been asking myself this very question when my friend Carey (and co-founder of Pushing Pink Elephants) recommended I read this book.  It answered a lot of my questions and changed the way I look at the pink ribbon culture.
      
I hope you all have a great weekend!!!!  Celebrate life, love. and happiness....Cheers!!!!!
       

Tuesday, February 12, 2013

C-Day 2/10

It is hard to believe a full year has passed since my diagnosis on February 10, 2012.  What a year it has been.  I think back over the last 12 months and feel so incredibly grateful and truly blessed.  So many people have made a difference or had some sort of influence in my life.  I was surrounded by people who truly cared about me and my family; who rallied around us as we made the tough decisions regarding treatment and surgery.  During the Super Bowl game (where my hometown of Baltimore won by the way) a friend asked if I felt like it has been a dream now that it’s pretty much behind me.  My immediate response was, “yes, a very bad dream.”  But then I started thinking, and it really does feel like a dream.  In the moment, my treatment seemed long and stretched out in front of me as I moved through my treatment process from surgery, chemo, more surgery, to radiation.  It seemed like there was no end in sight as I moved through the process.  Then, all of a sudden here I am, one year later, with just one more surgery in my future.  I remember feeling sick, being in pain, and having no energy, but it all seems like a long time ago.  As I was reflecting on this dream feeling, I realized just how quickly I have returned to a “normal” place in my life.  A place where I feel I can plan a future and where my personal world is not standing still.  A place where I get up every morning, take Char to daycare, continue on to work, leave at the end of the day to go home, and spend time with my family and friends.  Weekends are starting to fill back up with plans and events as we spend time with friends.  I take full credit as being the “planner” of our little group of friends, who in a lot of ways are a little family unit.  During my treatments, I stopped making plans and we did not all get together as much as we had in the past.  One day (I think in December or January) I realized, ok let’s start making plans again.  I am pretty sure in one day I had sent 10 emails (this may be a slight exaggeration, but it was a lot all in one day) to the group making plans for girls' weekend, group dinners, movie nights, 2013 vacation plans, and group trips.  If I thought about something fun we could all do, I wanted to know who was in.  Not everything was met with the same enthusiasm as I was feeling, which I totally get.  Their lives had continued as planned, and Steve and I were the only ones in that stall pattern.  So, yes, I feel like I have a “normal” life again in the sense that I can make plans and my daily routines are somewhat consistent again.  As far as feeling “normal,I am not so sure.


I somewhat equate having cancer to becoming a mom for the 1st time.  Aside from the end result and the best thing that has happened to me, childbirth is painful, exhausting, scary, stressful if you breastfeed, and requires a recovery period, which for some women can be long and unpleasant.  You have faith that everything will work out and that you will be a good parent.  Your life is never the same after you have a child.  Everything changes...from your daily routine to your relationship with your spouse.  You now have a new member of the family, who will be there throughout the rest of your life.  You will worry about them and care for them until they are able to take care of themselves.  There will be a few nights during those first months where the baby cries for no reason, and it might last for hours or all night.  You are literally helpless in those moments, especially as a new parent.  These moments create tension and fighting since neither of you can comfort the baby properly, and you each feel like you can do a better job.  As the months/years pass by and you settle in with the new baby and your new “normal,” you forget about the pain, long recovery, stress of breastfeeding, crying, sleepless nights, etc.  It feels a lot like a dream.  Even the struggles of being a new mom that seemed like such a big deal at the time, seem to fade away and you think, I could totally do this again.  No problem.  Let’s have 5 more.  Obviously, having a baby and the joy it brings can in no way compare to having a cancer.  You just get caught up in the moment, and those memories become fuzzy and faded.  For me, what I have been through is slowly turning into the dream feeling I have when I think back to having a baby and those first few months.  In the moment, it’s full of pain, exhaustion, stress, fear, and faith.  I remember feeling sick, having no energy, preparing for more chemo, then radiation, and the feeling of dread that it might never be over.  I had faith that my doctors were making the right treatment path for me.  I remember, but as time passes, it becomes less painful of a memory.


Cancer is now a part of my life.  I in no way want to forget about what I have experienced.  Could I do it again?  If I had to?  There will always be an increased chance that I might be asking myself this question at some future point in my life.  But if I had to?  Yes, I think I could do it all over again.  Will I want to?  Probably not.  Will I decide not to?  Possibly.  I carry the possibility of recurrence with me for the rest of my life.  I take comfort in the fact that it will keep me grounded and focused on what is truly important.  Just like my priorities changed after having Charlotte, I now have new priorities.  I have a completely different perspective on things now and what I think is important.  I try to stop and enjoy the moment and the little things that happen day-to-day.  This day will not be a day that I celebrate, but will be the day where I reflect and remember back over the difficult road I traveled.  
 
My relationship with Steve has endured, and we are creating a new and changing relationship.  Going through what we have has not been an easy road.  We continue to work through our changing relationship.  A lot of aspects are different now, and we have to adjust to make it work.  But, we are in it for the long haul and as time passes, I know we will get to a new “normal” here also.      
   

I know there are a lot of individuals out there who have not come out of this tunnel to the light I now am beginning to experience.  So many people reach the place where treatments are over, but they still have active cancer growing and spreading throughout their bodies.  Too many men/women are dealing with stage IV cancer, where their treatments have become about the quality of life and are no longer being told their treatments could be successful.  I in no way intend to take this next phase of my life for granted.  I am fully aware that breast cancer can and does come back.  There are women out there who have gone ten plus years being cancer free, but one day they are facing the same diagnosis, but this time around it's spreading and becomes metastatic.  So many people tell me I am so brave, inspirational, strong, etc.  But, the men and women who are facing cancer for the rest of their lives are the individuals who should be viewed in this way.  What I went through will be over in about 18 months start to finish.  Sure, I have pain and discomfort that might never go away, lymphedema prevention I have to worry about for the rest of my life, scars, Tamoxifen side effects, etc.  None of this seems so bad when you think about all the other people out there right now looking at an indefinite number of days, weeks, months, or years with cancer.  The shout out really goes to them.  Not me.  They should be our inspiration and the stories that are told.  

Tuesday, January 29, 2013

1st Hair Cut

Saturday, I visited a beautiful new spa that opened in the area for my 1st post chemo hair cut.  I had forgotten how much I truly enjoy getting my hair done.  Before chemo, I was a regular 6-8 weeker and always looked forward to my appointment.  It was not unusual for me to tell my stylist to do whatever she wanted or make a drastic change and chop off my long locks.  My most recent drastic change (aside from complete hair loss) was early in my pregnancy when I donated my hair to Locks of Love and went the shortest I had ever been.  That was a fun visit to the salon.  Since my hair was very thick and curly, the pixie cuts were a fun change and so much easier to maintain.  I was definitely excited for my 1st post chemo cut, and I had the added bonus of enjoying the brand new spa.  It was like being on a resort.  It's truly a beautiful facility.  I highly recomend checking it out if you live in the area.  I can't wait to check out other spa services in the near future at Spa On The Boulevard.

The stylist was great and recommended a few things that will help my hair to grow out.  We talked about style and color.....................................so fun to have these options again.  I will say this "new" curly hair is totally different than the big bouncing curls I had before.  My "new" curls are tight and tight some more.  I know over time they should loosen up some and may change completly.

We discussed my plans to donate my locks once they are 8-10 inches long again and buzz it all off.  This is something I definitely want to do as a reminder to myself and others that your hair is not so important in the grand scheme of life.  It will be a great awareness reminder for me ,so I never forget what other individuals are going though during treatments.  For me, my hair was another accessory.  I was always changing the color, length, straight, curly, etc.  Now that I have gone without it, I will do it again as a reminder to myself what's truly important in life and keep things in perspective.

I thought I would share some of the hair styles I have had over the years.

7-2007

6-2008

8-2009 (on our honeymoon)

10-2010

12-2010 (My God Daughter, and check out my cleavage)

7-2011 (6 Months Prego)

3-2012 (a few weeks before chemo)
7-2012 (With my younger sister)

9-2012 (Last day of chemo)

10-2012 (With my soul sister Erin O)

11-2012

1-2013 (After 1st hair cut)

From the back - Curlicues



       

Thursday, January 3, 2013

Research Studies (Metformin and Longitudinal Database)

I have been asked to participate in two research studies being done at Hopkins.

  1. Phase III - Randomized Trial of Metformin vs Placebo on Recurrence and Survival of Early Stage Breast Cancer - I stopped this study in April 2013 after I continued to lose weight and was unable to maintain a normal level.  I will no longer be participating in this study.  
This study will help determine whether Metformin can decrease, or affect, the ability of breast cancer cells to grow and whether this drug will work with Tamoxifen to keep cancer from recurring.  Metformin is currently being used to treat diabetes.  This study will help determine if it is better to receive Metformin with usual treatments of breast cancer.  Half the participants in this study will receive Metformin in addition to other treatments, while the other half will receive a placebo.  Previous studies of Metformin have shown that it may decrease the growth of different types of cancer cells.  Meformin lowers the level of insulin, a hormone found in the blood that can be associated with worse breast cancer outcomes.  In addition to taking Metformin, blood samples are also taken at specified times during the study.  This is a double-blind study, meaning that neither myself or my doctors will know if I am taking Metformin or a placebo.

  • Common side effects (likely)
    • Diarrhea
    • Nausea
    • Vomiting
    • Abdominal bloating
    • Gas
    • Loss of appetite
  • Less likely
    • Loss of taste or metallic tastes
    • Minorweight loss
    • Reduced appetite
  • Rarely
    • Rash, redness, or itchiness
    • Decrease of B12
    • Anemia
    • Inflammation of the liver
I will start taking either the Metformin or the placebo on 1/11 when I start taking Tamoxifen.

      2. Breast Cancer Program Hormone Therapy Longitudinal Database

This study is being done to learn more about the side effects of breast cancer hormone therapy and if a person's genetic information may help to develop a way to predict the side effects a patient may have and how best to treat them.  It will also help the researchers to look at how the side effects of hormone therapy influences a participants willingness to continue hormonal treatments.

I will be filling out questionnaires periodically that will ask spesific questions about how I am feeling, if I am taking the medication regularly, and any changes to my medication list.  I completed a base line and will fill out one at 3, 6 and 12 months.  This is all computerized, so I will be able to see what has changed and it will highlight things that are out of range.  My oncologist and myself will have access to the results, and they can be used to facilitate conversation about any issues I am having.

Tamoxifen 101

Some types of breast cancer need estrogen in order to grow.  These cancers have receptors, or sites, to where estrogen attaches, promoting cancer growth.  These are known as estrogen receptor-positive cancers.  Tamoxifen blocks the estrogen from binding to these receptors, preventing the breast cancer from growing.  For women with estrogen receptor-positive breast cancer (like mine), taking Tamoxifen for 5 years greatly reduces the rick of recurrence and the risk of dying from breast cancer.  Tamoxifen can reduce the chance of getting breast cancer by nearly 50% in women who are at higher risk.

Like with all medicines, this one comes with a long list of potential side effects.  Below are some of them.  
  • Common
    • Hot flashes (whats new - my special friend for the past 6 months)
    • Vaginal dryness or discharge
    • Mild nausea
    • Weight gain/loss
    • Bone pain
    • Dizziness
  • Less Common
    • Risk of blood clot in the lungs or the major veins of the legs
    • Uterine cancer
    • Eye problems
There was a recent study that 10 years of tamoxifen is better then 5 years.  study-ten-years-of-tamoxifen-better-than-five.  I discussed this with my oncologist who said that the recommendation to continue for an additional 5 years will be on a case-by-case basis.  For me it's really too early to say how long I will be taking this.  The possibility of having my ovaries removed in the next 5 years would change the duration, since I would replace Tamoxifen with a different (post menopause) hormone therapy.

Most of the women I have talked to about Tamoxifen all say they hate it.  Hopefully, my side effects will be minimal.

I will be starting this on 1/11/13.















Radiation - 100%

I have finished 28 rounds of radiation.  I had my last treatment 12/28 and was able to ring in the new year with 100% of my treatments behind me.  Aside from the inconvenience of daily radiation, I did great and my skin even held up well.  Dr. A was a little disappointed I did not have more of a skin reaction to the radiation.  But, she didn't suggest more treatments, which was great news.  Aside from a slight irritation and what looks and feels like a sunburn, I have not had any major issues.  I expected to experience fatigue, but it has not been bad.  Compared to the extreme fatigue I experienced with chemo, I was able to take this in stride.

We can now move on to filling the expanders, which I took a break from during radiation.  Today I received my first fill of 25 cc's in the right (300 cc's total), and 50 cc's in the left.  The left had been completely deflated prior to starting radiation.  It still has a ways to go before it will match the right side, but she wanted to go easy this time around.  Next week she will fill the left all the way back up.  Because my skin held up so well, it looks like we will be able to continue filling the right.  This is great news since radiation can cause tightening of the skin that would not allow for additional fills.  I have some muscle tightening under my armpit and try and do lots of arm stretches during the day to keep the muscles limber.  This also helps keep the muscle behind the expanders from getting tight, which can cause reconstruction complications.   

Next steps - Continue with the fills and start Tamoxifen

My fills ended shortly after this post and, unfortunately, we were only able to do very minimal filling of the expander for the radiated side.  Looks like a small size B is what we will get.  The surgeon did ask if I was ok if she has to go smaller once we get to surgery, so we will see how things pan out in June.  

Saturday, November 24, 2012

Happy Thanksgiving

I hope all my readers had a wonderful Thanksgiving and gave thanks for all the great things in their lives.  I have so much to be thankful for.  There are far too many to list.  I have been enjoying a fun weekend with family, friends, and lots and lots of yummy food.  We even had a little family outing and cut down our own Christmas tree today.

I have gotten a lot of my energy back, so it's been nice to be feeling better and doing more.  My immune system seems to be a little low, but aside from a little stomach bug, I have been pretty healthy.  My hair is growing extremely fast and is coming in much curlier than before. 

Charlee and I have been back to work and daycare full time for a few weeks now.  We both seem to be transitioning well and are getting back into the grove.  Char loves daycare and aside from not napping while she is there, she is doing great.  She gets right down and plays when we get there and does not seem to mind us leaving.

I think I wrote in a earlier post that I was going to stuff one side of my bra to help balance out my current unevenness.  I have not been doing that.  I try and wear shirts, sweaters, and scarves that hide it.  It's not the most comfortable thing to have something pressing against my left (deflated) side, and it was not worth the discomfort for me.  I am pretty much all healed from surgery and back to all my normal activities.  I still have some occasional pain, which can usually be traced back to carrying Char too much or overdoing it.  Since radiation increases my already heightened risk of lymphedema, I have to consciously be mindful of carrying things only with my left arm and not sleeping on my right side.  
      
Radiation Update:

I had my planning session, which included lots of x-ray pictures and some purple marker marks (5 total) in various places on my chest and sides.  I also got a tiny tiny tattoo that is about the size of a freckle.  During my final session "simulation",  they made sure all my markers lined up with the plan Dr. A wrote for me.  They removed the marks made during the planning session, but added a few more with black marker in various places (7 total).  A few marks are pretty hard to hide with scarves, but it is what it is.  This past week I had my first 4 daily radiation treatments.  So far, everything is going well.  It's a very quick session.  It lasts maybe 3 minutes total, and I don't feel anything.  It's a little strange, because I can hear the radiation but can't feel it.  So far, I do not have any skin burns.  My doctor showed me the radiation plan on the computer.  It was really cool, although I only understood a little of what she was explaining about all the different colors and radiation paths.
  4 down, approx. 25 more to go.

Here are a few recent pictures.