It's Time for Some Updates and Reflection

I am well overdue for a post surgery update.  I am around 12 weeks post surgery at this point.  My incision finally healed at 12 weeks.  When the doctors and nurses tell you that radiation can cause delayed wound healing, they are not exaggerating.  The left side (no radiation) came out of surgery practically healed right away.  The right and radiated side took a bit longer to finally heal.  Because of the delayed healing, I am still on the lifting, pushing, and pulling restrictions.

About two weeks after surgery, I started to notice an infection brewing on the right side, and it quickly gained strength.  I was prescribed two very strong antibiotics, and the infection cleared up in about a week.  The infection caused a lot of pain at the incision site, swelling, redness and was warm to the touch.  I was so relieved to be able to have the external stitches removed around 4 weeks, despite the infection complications.  Having these stitches removed was such a relief, and I started to heal better, but still taking 12 weeks to heal is a long time.  I still have full range of motion, but when I lift heavier things, I really feel the pull in the chest muscles, and I get pretty sore afterwards.  I have my next follow-up in another week, and I am hoping they will lift the restrictions, and I can start to do more things.  I definitely pushed things and overdid it a few times over the last 12 weeks, and I would notice the incision would start weeping, which did not speed up the healing process.  My advice for others who have had reconstruction after radiation, listen to your doctors and don’t push yourself.  It’s easier said than done I know, but there is a reason behind the rules, and the worst thing would have been for the incision to have pulled open requiring yet another surgery.

It’s hard to believe it has been a year since my mastectomy on 10/1/12.  With October being breast cancer awareness month, I have been doing a lot of reflecting back on the past two years since my diagnosis in early 2012.  This coming February will mark 2 full years since my diagnosis.  My life has been a bit crazy, but I think now that I am back to work yet again, we are finally getting into our new “post-cancer” routine.  There are definitely not enough hours in the days or enough days in the week.  I am trying hard to balance everything...family, friends, work, non-profit, plus making time for myself.  I am also learning how to manage my stress level as I try to take things in stride.  I am constantly telling myself to stop, take a deep breath, and don’t stress out.  Most of the things I stressed out about pre-cancer seem so small post-cancer, but it’s a work in progress to re-train myself.  Stress is just as toxic as eating processed foods, so I will eventually get to the point where I can deal with stress in a healthy manner.   

Many people fear the words and you hope and pray you never hear….“you have cancer.”  I can say I have been there and done that, so I no longer fear those three words.  I now fear a new term being directed at me by my oncologist……..”recurrence.”  Now that things have settled down, and I am presumed cancer free, I find myself thinking about this word.  My fear of recurrence is not something I feel consumed with, and I am not sitting around constantly thinking about it, but it is definitely something I think about more often than I probably should.  I also have a higher risk of developing ovarian cancer, which also plays into my thoughts since this is hard to find and detect early.  I think part of my drive and effort I have chosen to put into the non-profit stems from my determination not to focus on my chance of recurrence or feel sad about the changes cancer has brought into my life.  I look at it as, I can work hard trying to help educate the community, or I can be depressed and unhappy.  Every day I am pulling up my boot straps and looking forward to what’s just around the corner.  I feel happy to be here and focusing on the future.  But, it is not without some serious focus that I push my thoughts of recurrence aside.

As I reflected back over the last year or so, I was struck by the love that poured out of so many people.  There were just so many people who reached out and were extremely supportive, and they continue to be there for me as I learn to deal with life post-cancer.  I gained new friendships, had friendships blossom into closer and more connected relationships, and some that did not really stand the test of cancer.  I think most cancer patients can relate to the friendships that didn’t make it through their journey with cancer.  Cancer is a hard thing for people to deal with, and not everyone is able to be there for their friends who are dealing with a cancer diagnosis in the way you need them to be.  Cancer is a hard thing for people to relate to.  I think my perspective about what’s important has also changed, and I don’t really look at things the same way I did two years ago.  In a lot of ways, I am a different friend as well.  Some friendships flourish out of tragedy, while others do not.  But, the friends that do make it through the hard times are the people you keep close, because it’s these friendships that get you through the hard times.

Stay tuned for what’s next in my journey with breast cancer……………………..      

Famiy of 3

I have been struggling with the IVF decision and whether I should proceed with the procedure and harvest my eggs.  I have weighed the pros and cons extensively and still feel torn between more children and the risk associated with massive amounts of hormones needed to get my body ready for the harvest.  I had already decided I would not carry any more children.  IVF, however, could possibly give us the option to have a biological child through a surrogate (if my eggs are even viable, and then transferred and implanted successfully).  I have sadly made the decision not to move forward with this.  It was a tough decision to make and also a difficult thing to come to terms with.  Charlotte was such an easy baby and transitions so well to change.  It would be so fun having another little one around.  I also feel somewhat cheated since from 4-12+ months I was in treatments/recovery and not feeling very good physically.  Although, I spent a lot of time with her, because I was on leave and appreciated the time immensely, I was fighting and struggling through the difficult journey that comes with a cancer diagnosis.

Charlotte is such a blessing, and I am thankful each day for her.  It looks like we will be a family of three for the indefinite future.  Most of my friends are still planning on children, or in some cases expanding their families in the future.  I have promised myself that I will be happy for my friends and enjoy their excitement and planning.  Babies are little miracles and so very special.  I intend to squeeze and snuggle as many as I can.  After all, I can’t lose that baby whispering ability I have that puts all babies to sleep when they are in my arms.  

As I type this post with tears of disappointment and sadness, it is important for both Steve and I to come to terms with this decision.  We need to move forward with our lives enjoying the beautiful child we were able to have and not dwell on what could have been.  We need to enjoy and embrace the life we have now and not take a minute for granted.

I cannot promise Charlotte will not be spoiled, although we have tried our best not to.  Chances are high we will be unsuccessful.

Implant Post-Op

I am a little over one week post-op.  Thursday, 8/1, I had my follow-up with the nurse, and she removed the bandages (ouch) and gave me another rundown about what I should not be doing.  No pushing, pulling, lifting (over 10lbs), overreaching, swimming, sudden movements, stretching, or exercising.  These restrictions could last up to 12 weeks.  I have a follow-up with the surgeon in 4 weeks and hope some of the restrictions will be lifted.  The incisions are healing well.  The cancer side has dissolvable stitches and also 9 stitched on the outside to give some extra protection against the incision opening.  Since this side was blasted with 28 rounds of radiation, there is a potential for the incision to open up and not heal properly.  Overdoing it and overuse of the muscle on that side could also make the implant raise and open up the incision.

The implants look ok.  The cancer side is a little smaller and is definitely holding the implant closer to my chest than the other side.  I probably should have asked to have the expanders stretched bigger on that side so the tightening caused by the radiation would have made them a little more symmetrical.  At this point, it is what it is, and having the expanders removed is a vast improvement.  During the appointment, I forgot to ask what size (cc's) they put in, but when Steve talked to the surgeon after the procedure she mentioned 300 cc's.  That’s about a B after a mastectomy with no other tissue in the breast.  There are some noticeable ripples under the skin, which may go away as swelling goes down.  They could possibly do a fat graft and do a little lipo to inject into the location.  I have to wear a sports bra 24/7 (except for showering) for at least 6 weeks and have to do implant massages 10 times a day.  I am only allowed to do this on the non-cancer side for now.  The cancer side has to be babied for a while to make sure the muscles and incision heals properly.  The risk of capsular contracture is high for the cancer side.  This occurs if the scar or capsule around the implant begins to tighten.  Capsular contracture can be treated in several ways and sometimes requires either removal or scouring of the scar tissue, or perhaps removal or replacement of the implant.  Radiation therapy dramatically increases the risk of tightness around the implant due to radiation fibrosis.  This could mean many additional procedures, but hopefully I will be an exception.

The surgery went smoothly and lasted over 2 hrs.  There was some damage to the muscle from the radiation, so they had to do some extra work on that side.  I was in recovery for awhile, because they had a hard time managing my pain.  The meds they give in recovery work quickly, but wear off just as fast.  I was home by late evening and after eating a little, I was headed to bed.  The first few days the pain was bad, but it has gotten a lot better.  Now, it just feels very tight and sore mainly on the cancer side.  There are still times when it hurts, probably from moving around too much.  Charlotte fell off the couch the other day and my natural instincts had me moving to catch her.  I didn’t make it in time, which was good because just the sudden movement of reaching out hurt pretty bad.  I can’t imagine how painful it would have been if I had actually caught her.  

I will say having an active toddler around has been difficult for recovery.  She is so fun and makes me laugh, but wants to be picked up or held, and she gets a little frustrated with me.  Even though we were always good about taking turns with different things, she has wanted her mommy a little more than usual.  It is hard to send her to daycare while I stay home, but it’s the only way for me to really rest.  It’s a good thing she loves daycare and happily leaves each morning, marching her little butt out the door.

Overall, I am doing well, aside from the limiting restrictions and am feeling better each day.

The Next Steps

Upcoming Surgery:

We are gearing up for Thursday, July 25^th, the date of my exchange procedure and what will hopefully be my final breast surgery.   I am definitely ready for this next step, but not overly excited to recover from yet another surgery.  My surgery will last from 2-3 hours, but I should be home in the early evening hours.  I didn’t have many options for reconstruction.  The implants will sit inside the pectoral muscle that has been stretched by the expanders.  Because I don’t have tissue options to help smooth out the lines, they will probably look pretty defined.  I decided to go with silicone implants as opposed to saline.  Although saline is very safe and are not harmful if they leak, they feel harder and tend to show ripples under the skin in thin women (with the absence of other tissue).  Silicone implants can be harmful if they leak, but cosmetically feel more natural and shouldn’t show ripples under the skin.  After a discussion with my surgeon, I decided silicone is my best option.  I am not sure what size implants I will end up with.  It will all depend on the size of the cavity when they go in.  Most likely, I will be a big A or a small B.  Although I am a little disappointed with the size, implants of any size will be so much better than these rock hard coconuts I have right now.  There are definitely some perks to having small tatas.  The recovery is around 4-6 weeks.  Just like my surgery in October, I won’t be able to lift Charlotte for six weeks, which will be hard.  She is going through a mommy only phase, but we are hoping she can handle my being less active than normal.  

More Baby Yales:

Steve and I have talked on and off about future children and if they are something we want to peruse.  I will be on Tamoxifen until I am 37, and most likely, with the new studies showing 10 years is better than 5, until I am 42.  Put this on top of the highly recommended oophorectomy I should get by the age of 40, there is not a lot of opportunity for more children.  We decided to talk to a specialist and assess our options.  I went in thinking the worst, but it ended up not being as hopeless as we thought.  We actually have a few options.  The first step will be to check and see if my eggs are viable.  I am not sure when that will be just yet, but it could be soon depending on when my plastic surgeon gives her blessing, and we may have some options available.  Charlotte is by far the best thing that has happened to us, and although we are open to hearing our options, we may not end up pursuing them.  If she is an only child, she will be loved and surrounded by lots of caring people.  Although, I do worry about spoiling her a little too much given what we have been through.

This blog:

I started this blog to keep family and friends updated on my treatment plan and how I was doing.  That continues to be the purpose of this blog.  Although, Pushing Pink Elephants, the nonprofit, is gaining momentum and is pretty much what I spend my free time on, this blog will be separate from the great organization Carey and I (alongside other great individuals) have created.  This blog is my personal story and the Pushing Pink Elephants organization will soon have its own blog (not me) helping push awareness, and the mission of the organization.  I am not sure how long my blog will continue, but I feel I should follow it through my path with breast cancer, especially for other women who are following or are starting their own journey with BC.  I will try and keep updates going as I make it through this long journey.  And it has been a long one.  Sunday I signed the hood of the demolition derby breast cancer truck that will run at the Cecil County Fair later this week.  Under my signature I wrote the date 2/10/12, which was 17 months ago.  That seems like such a long time ago, and the journey continues…………  

www.pushingpinkelephants.org

I have a few things to update you on related to my upcoming surgery, future baby Yales, general info on how I am doing, and the future of this blog.  In the meantime, check out the Pushing Pink Elephants website at www.pushingpinkelephants.org.  We have lots of great information we hope you will find informative and very helpful.  Stay connected by liking us on Facebook at www.facebook.com/PushingPinkElephants.  I will post an update here soon!!!!

Procedure........Not the One I Had Planned

Looks like there will be a procedure in my future that is not what I had planned.  My exchange surgery has been pushed to 7/25, but I am not sure at this point if it will actually take place that soon.  First off, I have been having some excessive bleeding (I know, TMI) every 2.5 weeks since the beginning of April.  I will say it has been a very unpleasant experience the last couple of months given the "menopausal" state I have been in since chemo.  During my annual visit to my GYN, and after discussing the symptoms, he decided to do an endometrium biopsy (ouch).  Fortunately, the results came back negative for cancer, but positive for an endometrial polyp in my uterus.  Since I am taking Tamoxifen, the presence of a polyp is of some concern, given one of the side effects of Tamoxifen is uterine cancer.  I will be having a D&C to remove the thickening of my uterus lining and an additional procedure to remove the polyp in a couple weeks.  This is all done outpatient, but I will be put to sleep during the procedures.  If the polyp returns, or this becomes a recurring issue, we will need to discuss other options.

In addition to the polyp, my thyroid was very underactive.  This explained the excessive fatigue and lack of focus/concentration I had been experiencing.  It may even be somewhat related to the bleeding, although the polyp is more likely the cause.  Since one of my sisters also has an under active thyroid, and it had been a few years since I had been tested, my GYN decided we should look into it.  Plus, he noticed my thyroid was larger than normal.  The normal level of TSH is 0.40-4.5 mIU/L.  My levels were at 47.00, and I was feeling pretty lousy by the time I got the blood results on 5/24.  I started taking a low dose of synthroid to help regulate the thyroid, and I can definitely feel a difference.  This will probably take a while to regulate since it is one of the largest glands of the body, and it controls a lot of things including hormones.  It can also affect the white blood counts, which were also a little low during my blood work.  Why all of a sudden I am having a thyroid issue???  Coincidence the timing is shortly after my treatment???  I am meeting with a specialist at Hopkins in August who might be able to shed some light on the issue.  I did have radiation to the lymph nodes in my neck (close to the thyroid gland).  Not sure if that has anything to do with this, but the timing does imply they are related.

I am hoping to have the procedure to remove the polyp in the next couple of weeks and am hopeful the thyroid will get regulated and hopefully stay that way.  Maybe it will jumpstart and kick back in gear on its own.  I will not be cleared for my exchange surgery till the thyroid is completely regulated, so I am not quite sure now when that will actually happen at this point. 

Overall, I am feeling better.  Still not full of energy, but the meds are helping.  I am not looking forward to the D&C, but hopefully it will help.

It's not always the easiest path once you become a breast cancer survivor.  Stories I read or people I talk to can be empowering while at the same time scare me and shatter my optimism.  During the last month (on top of all the other issues I was having), two specific people come to mind.  One bravely fighting an aggressive cancer that at the onset was so similar to mine it seems unreal.  Her cancer began to spread within a year after her original diagnosis.  7 years later, I watched her walk her daughter down the aisle and dance together during the reception.  I will be honest.  I was so happy and incredibly sad all at the same time as I thought about Charlotte growing up.  After we got home from this incredible wedding, I learned of another women who received a terminal diagnosis of breast cancer over ten years after she was originally diagnosed.  She was gone just a few days after learning her diagnosis.  I went to a dark emotional place where thoughts of either situations happening to me clouded my mind.  But, after the tears subsided (Steve was very happy about this) and the fear passed, I realized that although there are times it is difficult to stay positive, good things come from hearing these stories.  It fuels my passion for change and helps me focus on what I can do to stay healthy.  Getting to meet the incredible woman who has been fighting for years, trying chemo after chemo, and seeing how she has stayed positive through it all, was incredible.  I would not take back meeting her for anything.  I have said this before, and I will say it again.  She, and women like her, are the true heroes in the fight against breast cancer.

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!!!!!
       

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.  

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

       

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.