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!!!!!