Cupcakes & Cancer...well, maybe a little more cupcakes than cancer these days...My journey with life continues...

October, 2014

From every wound there is a scar, and every scar tells a story that says "I SURVIVED"!

Recovery from this whole crazy journey took much longer than anyone ever anticipated.  2013 include about 10 surgeries, 3 five day all-inclusive hospital stays from infections, a bunch of funny stories, and a lot of tears...all before the middle of October.  I learned to give myself daily IV and had home health care on Mondays for a two months, tried an expander for a few months with really slow fills, had an open wound for about 4 months, and then finally got a little bit of a break from it all.  My body had gone through too much and Dr. V and I decided that it needed a rest.  To be honest, it was nice to not be at the hospital weekly, but it also meant that I had to deal with my body being "on hold", which in so many ways meant that putting cancer behind me was on hold.  Plus, all the doctors, fellows, residents, nurses, receptionists...missed me so much!  Fingers crossed that I won't lose my "frequent flier" miles at Loyola.  I'm hoping to get my own parking spot!

The crazy part is that my cancer treatment from 2000 has caused all the issues since my original big surgery.  That's right, I may be cancer free, but I can't get free of the impact that it has on me.  I'm in a good place emotionally, but physically things were a little tough.  I missed working out.  I missed looking "normal" in clothes.  Granted, most people would never know.  I miss having thick hair and I am stuck with short thin hair...would it be too much to ask for a ponytail?  I miss eyebrows.  Yes, eyebrows...how have those not grown back and it has been two years since I ended chemo.  My list of things that I miss could go on, but the wonderful things that I have gained will not be overshadowed. More than anything, I know that there are very few things in life that I would not be able to handle. Nothing shocks me.  I am well educated on the disease, how to help others, what to speak with a doctor about, what meds to take, etc.  MOST importantly not a day has gone by that I was alone in my journey.  Family, best friends that are like sisters, friends near and far, and even strangers have cheered me on and kept me in their daily thoughts and prayers.  I appreciate every day...EVERY DAY.  They aren't all great days, but they are all days to treasure in some way.  I stop to smell the roses, take too pictures, go to kids games, spend time with friends, etc.  There are also times that I feel guilty for still being here...survivor's guilt.  So hard to explain, but a deep emotion that can easily take over and bring tears.  Also an emotion that shows me that I can't take life for granted because so many did get to this point.  I lost three dear friends in 2013.  Three women that taught me so much and were taken from family and friends too soon(60, 39, 43).  Mary, Stacey, and Barb - I try to live each day to the fullest in your honor...you are so close to my thoughts.  I also have several friends that are dealing with mets from cancer and they are all under 45 years old, have young children, husbands, families.  It scares me so much and is a reminder that the disease can come back and take over, so I must stay on top of my appointments, medicine, and overall health.  It isn't a guarantee, but it is the best that I can do.  Trust me, there are days that I'm convinced that "it" is back.  I look forward to those days being few and far between.

My last big surgery was in June 2014 (really, who needs a back muscle if they have two breast?), I changed jobs in August, and I finally feel like things are getting back to my new normal. I'd love to drop the weight that the meds have caused me to gain.  My friends remind me that I need to stop being so hard on myself and be happy to be alive (fluffy and all).  The gym and 6 days a week of working out seem like 100 years ago.  I finally have the "all clear" to work out, but I don't have the capacity that I once did or the range of motion.  Without a latissimus muscle on my right side I deal with some pain most days, but have learned how to manage it.  I simply can't wait to start boxing regularly, but I am certain that I will NEVER be able to do burpees again.  Darn!  ;)

I even started dating again.  I swear dating is more painful than chemo some days, but I can't keep all this awesomeness to myself.  Don't worry, I typically go on one or two dates and then blow him off because I have no idea how to explain what I've been through.  It's pretty hard to bring up over a bottle of red. "Pour me another glass and oh, by the way, I've had breast cancer, twice.  But don't worry, I'll be perky forever."  Probably most days I worry that I am damaged goods that most men will reject once they know what I've gone through.  So, I do my best to avoid the rejection. Sad for them to never get the chance to see the person that I have become, to experience the friend that I am, the cheerleader that lives inside me, the humor that I bring to strange situations, the strength and endurance I possess, and so much more.  Someone will see past the scars and find the huge smile on my face...he will be a lucky man.  At least that's what friends tell me.  To be honest, I cannot allow anything less to join my WE.  Thankfully I will always have my Divas to be my true loves. Their kids just better be ready to sneak vodka into our nursing home rooms.

2015 will bring a couple of little surgeries to" nip and tuck" goofy spots and maybe a tattoo artist to add a couple of personal touches.  Dr. V claims it is all the fault of my body, but I remind him that it didn't look this way before he got a hold of me.  Thankfully he and I have been through hell and back together and we are able to laugh on the other side.  My doctors have become partners and friends during our time together.  I trusted them with my life, I made educated decisions with them, they trusted my needs, and we are all here to talk about it today.  ALWAYS be your own advocate with your health.

Within the next couple of years I will have another big decision to make...okay, not really a decision because I know what needs to be done, but I just need to be prepared to do it...I carry the BRCA gene and because of that I will have to be proactive in health options.  I will put that off until this part of the journey is behind me.

WOW...Writing this feels so good.  Of course, I don't go back and proof what I write, so you are stuck with my poor spelling, bad grammar, etc...I think faster that I type, so these are usually a mess to read. (Let's face it, I went to an all girls high school and never had the opportunity to take typing.  Grrr.) Putting my feelings and thoughts to paper or social media have been a huge part of the process for me and definitely kept me sane over the years,  I so wish I would have stuck with the blog when things simply got too tough, but I will never regret sharing my journey via here or Facebook.  The sharing changed live, helped so many, and gave an of too honest view of cancer from my perspective.

If you're reading this please know that I am in a GREAT place in my life.  WE got this!  I didn't get to 43 on my own and I know that I have so many by my side moving forward.  More importantly, know that YOU are stronger than you can ever imagine!  The storms in life make us who we are...the good, the bad, and the oh so WONDERFUL!!  Much love!

XOXO,

S

Surviving, Thriving, and the Importance of Support

Hey there everyone!  I know that I officially "stink" as a blogger these days.  It is hard to believe that I have not written anything in months.  Life, reconstruction, hospital stays, exhaustion, etc. have simply gotten in the way.  I have done my best to keep friends and family updated via Facebook, but I promise to start writing again soon.  Good news...I'm cancer free!!  Bad news...my body just doesn't want to heal from all the trauma.  So, reconstruction is on hold.  In the meantime, please take a moment to read the guest blog spot about Kasie Coleman below.   

Kasie, you are in my thoughts and prayers.  

I'll write more over Thanksgiving break...I have SO MUCH to be thankful for and so many things to write about.  It is time to make blogging a priority again.  

Much love!!!  

XOXO, 
Sue

Hi there, Cancer and Cupcakes readers. I’m Faith, and I’m here on behalf of The Mesothelioma Center. We’re a team of cancer advocates who want to spread the word about health, research and recovery – and, of course, provide some inspiration to survivors, the way that Sue does every day here on C&C.
Sue’s been fearlessly sharing her story with us (and you!) and graciously offered us her blog today to let us share a similar story. My co-workers and I have all been cheering for Kasie Coleman as she bravely battles her terminal mesothelioma diagnosis, and consistently proves that there’s always hope for a future – no matter what your medical records read. Perhaps you’ll lend her some support as well? (You’ll also be happy to know that Kasie loves to bake cupcakes, as well, and actually has her own bakery.)

Kasie Coleman was diagnosed with mesothelioma in July 2010. She’d been experiencing symptoms for nearly two years – but because she was far outside the traditional patient profile, this rare cancer was one of the last things on her doctors’ minds.
(Of the 3,000 or so patients who are diagnosed with mesothelioma each year in the U.S., the vast majority are white men older than 65. That’s three strikes for Kasie – an African-American woman who was in the first half of her 30s.)
But after a long – and emotionally exhausting – diagnostic process, a surgical oncologist finally nailed it down. The official result: malignant peritoneal mesothelioma.
At the time, the outlook was not favorable. The most up-to-date research indicated a survival rate of several months to a year – and that was the most positive figure. But for Kasie, those statistics were just that – an estimate, not a final sentence.
Her medical team wasted no time in putting her on a highly aggressive treatment regimen. After nearly two years of chemotherapy cocktails and invasive surgeries, Kasie heard the news that incredibly few mesothelioma patients hear: “You’re in remission.”
While researchers have made major strides since the time of Kasie’s diagnosis (and have, in fact, found that her HIPEC treatment is one of the most effective ways to treat her specific cancer), mesothelioma is still considered an incurable disease. However, Kasie stands as proof that even when the outlook is statistically bleak, there’s always hope.
Real-life miracles like Kasie’s happen more often than we all think. Whether it’s in the form of remission, a promising response to an experimental drug or just earning one more day to spend with family, these successes deserve to be shared. It’s up to survivors to keep the community of support alive and well.


Faith Franz blogs for The Mesothelioma Center at Asbestos.com. She enjoys educating cancer patients and their families about the benefits of alternative medicine.




My Surgeries Have Caused Me to Have a GREAT Addiction - January 7 - 21, 2013

 "So, please, oh please. we beg, we pray, go throw your TV set away, and in its place you can install, a lovely bookcase on the wall." - Groucho Marx

I could probably payoff my medical bills if I sold all the drugs in my medicine basket.  Don't worry, I'm too chicken to do something like that.  I'm just trying to prove a point.  I have enough drugs in my house to cause a small addiction but my addiction has become TV, especially Netflix and Hulu.  When you are stuck at home, can't drive some days, have insomnia, and simply don't feel well, you have to pass the time.  Of course I could read some books but my attention span for reading is just not there but I have more than enough attention inside of me to watch a RIDICULOUS amount of television.  Let me give you a rundown of how I have passed the time...DO NOT JUDGE ME...I'm sickly and on meds.  ;)  I will list them in no particular order:

Dexter - That's right, I have fallen for a serial killer.  I mean he is just hot in his "murder outfit" and apron.  And who doesn't like a man that can handle his knives?  He only kills people that "deserve" it.  I have watched 6 seasons and often the seasons were finished in a day.  How did I not get in to this show sooner?  Thanks, Kevin McMaster and Kelly Perez for feeding my Dexter addiction!  Cannot wait for season 8 to start in June!  Keep that subscription to Showtime Kevin!  I'll bring dinner every Sunday! 

Weeds - I am seriously thinking about becoming a drug dealer to pay for my medical bills and shoe collection.  Who would suspect the bald chick?  Mary-Louise Parker is great in this show, even if she reminds of Lauren Graham and causes my mind some confusion.  I clearly did not realize that there were 102 episodes of the series before I started watching.  BUT...I'm not a quitter so I finished the entire series.  Good show that somewhat "jumped the shark" in the final seasons but it still made me laugh and kept me entertained.  Happily they were half hour episodes.

Friday Night Lights - OMG!!!  I love this show and it is a true crime that it is no longer on TV.  5 seasons was not enough of this gem.  I have heard Michelle, Chris and Keri (my Work WE) talk about the show for some time now.  Football, social dynamics, hot guys...need I say more?  Happily I can now join in on the conversations.  Coach Taylor, Tim Riggins, Julie, Matt, Tammi, Tyra, Lyla, Jason, Landry, Dillon Texas...come back!!!  I will be one of the first in line if they do make the film that is in the talks.  Texas FOREVER!  




Hoarders Buried Alive - Do you think your house is messy?  Do you not have the energy to clean?  Are you worried when people stop by?  May I suggest that you watch an episode about hoarders?!?!  The show is like watching a train wreck because it is hard to turn away.  I cannot even imagine how people live in such sad situations but the show has let me feel better about the not so tidy house of mine.  Who can clean when there is so much on TV??

Finding Bigfoot - I'm considering joining the IL BFRO - Bigfoot Field Research Organization.  http://www.bfro.net/   I think I could do just as good of a job as Bobo or Cliff!  I mean I really wouldn't want to go out and stay in the dark woods alone but I am sure we could negotiate!  The show is entertaining and has beautiful scenery.  Plus, you can't boohoo a show that has made it through 3 seasons and has yet to actually Find Bigfoot!
Guilty pleasure!  Bigfoot was big when I was a kid.  People talked about him, my Dad believes in him (don't ask), and The Six Million Dollar Man and Bionic Woman had Bigfoot on the show. Looking forward to season 4 and I am prepared!


Thanks KCP...it's perfect and pink!  ;)

Scandal - If you have not watched Scandal you MUST!!  How did I not know about this show sooner?  Politics, murder, scandal, craziness, love triangles...this is right up my alley!  I am completely against infidelity but I was Olivia to be with the married President.  And I truly wonder how much craziness goes on behind the scenes of Washington politics.  More importantly, who dresses Carrie Washington?!?! She is stunning.  




Downton Abby - Super high on my list of amazing TV!  My friend Mary has talked about the show.  But I never turn to Channel 11 all that often.  You can sometimes find a good episode of Nova but that is about it for me.  Downton Abby has brought PBS to the present with a show about the past.  I typically do not like period movies/TV but I absolutely love this series and couldn't stop watching.  I made sure that I was caught up for the January 6 premier of season 3.  I would probably be one to live downstairs and envy those upstairs.  :) I may consider giving a pledge to PBS because of this show.  Masterpiece Theater has outdone themselves.  Thankfully it is not on during the same season as Dexter...this would cause some stress!



Ink Master - As a girl who is afraid of commitment... you wouldn't think that I would watch a couple of seasons of a tattooing show.  I'm not sure where I found this or why I started watching.  I think it was a 2 AM fix that needed to be fed.  I must have ran out of options.  I will be getting my first tattoos next month, so maybe I am just curious!  

Tanked - There was a marathon one day and it was of Tanked.  A few East Coast guys living in Vegas and building amazing fish tanks.  The tanks are really cool but what gets me is the funds that people have to spend on these massive fish tanks.  They built a massive tank for a church in Texas...it cost over $4.7 million!  HUH?!?!  Where does a church get that kind of money and why the heck would they spend it on a fish tank??  I don't think that's what the Bible meant by "Be ye fishers of men."!!!  


Full Throttle Saloon -  DON'T ASK!!!!  One of the many shows on TV that remind me why reality TV can truly be a disaster!  I have to admit that I had a strong desire to hop on the back of a Harley with my chaps on and a bikini top... but let's face it that is not really my scene.  I don't think I'd make a good "biker bitch" and I look like I am actually wearing a helmet even though I am bald.  Boy do they all rake in the funds for a short period of time. 


Every Hallmark Channel Christmas show - Don't worry, I will not list these out.  Let's just say there are a LOT of Hallmark produced holiday movies with the likes of Tori Spelling, Joey Lawrence, James Brolin, Shelley Long, etc.  Apparently the stars of my youth have found success in low budget Christmas "love" stories filmed in Canada, eh!

Touch - Interesting concept that didn't play out well in my mind.  I gave it a full season plus.  Kiefer Southerland should have stuck with 24 because he is trying to play the same character in everything he does.  On the other hand, the little kid is a cutie.

Warehouse 13 - Some bad things can happen while searching Netflix at 3 AM...I hit the Sci-Fi section and Warehouse 13.  Mildly amusing, far-fetched show, that seems to do great on the Sci-Fi channel.  Easy to watch when you have no interest in thinking or while using pain killers.  

Shark Tank - LOVE me some Shark Tank and the ideas that people try to sell the billionaires.  Truly a fun concept in reality TV and it is great to see so many get their big break.  Also fun to see some of the wacky things that people come up with...who actually needs or would buy some of these ideas that people spent their life savings to invent???  But everyone could use a little Mark Cuban or Mr. Wonderful in their life!  


Many others that I am sure I have forgotten or I am too embarrassed to admit.  ;) I will not even try to count the number of hours that I lost with my crazy addiction (hmmmm...My Crazy Addiction should have been added to my list).  There were even a couple of movies dropped in here or there.  I may not be smarter for watching these shows but I kind-of accomplished things along the way.  It took a lot of stamina and commitment to watch that many episodes!  I need to get back to work soon...that will be my rehab...my Betty Ford!!

XOXO,

Sue







"She hurts and she cries but you can't see the depression in her eyes, because she just smiles..."

"Each time I look at a picture of myself, I can remember the happiness that I once had, but can't feel the person that I once was at the time."

Well, I started the blog and promised I would be honest to a fault. Not only honest to all that may read this but honest to myself. After finishing chemo I was doing pretty well emotionally, but after my bilateral mastectomy and second surgery I allowed myself to go to a darker place. Seclusion became a place of content. More time was spent in bed than out. Showering was a chore, cleaning was optional, I sometimes acted like I was sleeping when my parents stopped by, and I literally gave no thought to work (I'm on FMLA). When asked how I was feeling I would respond "tired" or "in pain". While I am usually tired and was in a good deal of pain, the reality was that I was fighting depression and these answers were easier to say. I'm not a stranger to depression as I have faced it before in my life. The hard part is that I truly thought that those times were far behind me.

Everyone knows that I am off treatment and I have the major surgery behind me. Most think that I should quickly bounce back to my old self. I should be jumping for joy that I am cancer free (as far as we can tell). Unfortunately, I don't know where to find my "old self". The strain of trying to stay optimistic and strong has taken its toll. How many of us take the time to realize what we have been through and just how much it has affected us? We are all fighting a battle of sorts but we don't often give the battle scars the time that they need to heal. Statistically it is not a surprise that depression jumped on the bus for this journey. It is estimated that 25%+ of women find that they are depressed during their first year of battling breast cancer. I find that particularly enlightening and oddly reassuring. Diagnosis is overwhelming; fear of death, surgery, chemo and radiation are all things that took their toll on my psyche. But it is the struggle to regain control of my life that has thrown me into an emotional tailspin. I did my best to find the strength to put on a happy face and pretend that everything was ok, but under it all I was feeling emotionally raw and distressed.

While I knew that depression was taking up residence in my head I allowed it to move in and I even provide furniture and a perfect view. Hours spent in bed WAY outweighed time out of it. I left for doctor appointments and a few other select things but I would crave the solitude of my home and bed when I was not there. I think all of my close friends and family saw it coming and they tried to address that situation but I kept telling them that I was ok, but "tired". I just don't even remember the last time that I was able to say "I feel great!" or "I'm doing well..."...ohhhh how I miss those days.

Depression is one of those areas that is not discussed enough during battles with cancer or it is discussed in a "there's something wrong with you tone." Perhaps it is because society fully expects one to pop the champagne and celebrate when progress in cancer treatment is made or even a clean bill of health is given. The ultimate expectation is that one will step right back into daily routines with vigor and appreciation for each day. For many, their minds and bodies are saying "NOT SO FAST!" I'd love to say that my cancer story will end when I am finished with treatment but in so many ways the journey will just begin. There is a post-treatment phase that will impact my daily life. That phase will last a lifetime.

My depression wasn't filled with crying or anything like that. Instead it was filled with the shades shut, comfy pillows, Netflix, Hulu, etc. I had set up my room to be a comfy retreat before I had my bilateral. Maybe I made it too comfortable. Maybe I already knew that I would be spending too much time in bed. Six weeks off of work was a lot for me. I rarely even take a full week off and now I find that work in the furthest thing from my mind. This workaholic had too much time on my hands. While I was in bed a ton I had very little sleep. My insomnia was at its highest. This could be because I was engrossed in watching so many shows on TV. I was addicted to finishing full series and often finished complete seasons in one day/night.

Sometimes my view of shows was interrupted by Henry!  


Off to change the channel!

XOXO,

S






"What did you do with the gifts I gave you". I'm sure she answered, "Everything I could." - January 1 - 6, 2013

 "God gave you a gift of 86,400 seconds today.  Have you used one to say "thank you?" 
- William Arthur Ward.

The new year came with sad times.  My dad's cousin, Norine, died suddenly on December 29 and I was struck by so much sadness.  I couldn't help but cry uncontrollably after reading a  beautiful post that her son Jason wrote about his love for his Mom and family.  I won't go in to too much detail because I haven't asked for permission but here is a snippet.  Norine was a single Mom for the majority of her parenting and she raised three great kids that have become great parents.  Jason's words struck me so much because she didn't always lead an easy life but she always gave 110% to her children and grandchildren.  She was their biggest cheerleader and always supported them.  Clearly this is a trait that runs in the family.  Her father, Polly, and my grandma, Eileen, shared the same love for their children and passed it down.   While we have never spent much time with my Dad's side of the family I used to run in to Norine often and was always inspired by her beauty and kindness.  I so wish that I could know them all better.  Jason's words about his Mom remind me so much of my love for my parents and their love for me.  Many of my tears came from knowing that the kids would not have their cheerleader standing my their side but I need to remember that she will always be in their hearts.  For those of you who are parents PLEASE always encourage and support your children...everyone needs a needs a cheerleader...there are few things more important in life.  I wouldn't be who I am today without my parent's love. They are the president's of my fan club.  Life is too short to not love family.  Jason and his sisters' faith has also inspired me to reflect on my faith.

Jason wrote a sweet line in his posting about his love for his Mom:

One of Mom's favorite statements was, "Someday when you stand before God, He is going to ask you what you did with your gifts (this is how she referred to her children). How are you going to answer?" Well my Mom had that conversation with God on Saturday and when God asked her "What did you do with the gifts I gave you". I'm sure she answered, "Everything I could."

I don't know if I will be blessed with children but I do know that God has given me many gifts that I need to use to the fullest.  WE all need to have the same answer that Norine had...WE all need to do everything we can.  Jason, Nolan, Neely, and the rest of the family...you will always have a wonderful angel looking over you.


The first few days of January brought a trip to my plastic surgeon.  I think that my car just drives itself to Loyola these days.  The necrosis of my skin is getting worse daily.  We have tried everything and the skin simply does not want to participate in the process.  I have my appointment with Dr. V on Thursday, January 3.  He takes a look at my right breast and simply says "what are you doing tomorrow?"  If a doctor asks what I am doing on a Friday I would have high hopes that he is asking me to dinner or drinks but that is not the case.  He feels that the skin in beyond repair and needs to be removed immediately.  If I had my "responsible driver" with me I would have probably went in to surgery that day.  My eyes filled with tears as I started to ask questions.  What does this surgery mean?  What all will happen?  Surgery will include me completely going under, removal of my implant, removal of the dead skin, cleaning of the area, a new implant, AND A DRAIN.  Seriously!?!?!  I just got rid of my drains last week and I will get a new one tomorrow.  The difficult part is that I actually like the look of my breast reconstruction and my right side was my "favorite".  Well...now it is going to all change in less than 24 hours.  Surgery is quickly scheduled for the morning.  They move so fast on this because the skin can breakdown and potentially cause a severe infection because of the implant being a foreign body.  I will be back in the morning for my third surgery of the journey.  My first call on my way out is to make sure that my "responsible driver" is free.

Thursday evening my family meets at the wake.  It is an emotional time for her family but I am in awe of their strength.  My Dad's tears break my heart.  I spend some time talking with Jodi, a friend from high school and a good friend of Jason's.  When we reach the family at the front of the room the family could not have been kinder to me about my journey.  I know that Jason and his family have said prayers and lit candles at the Notre Dame Grotto.  But here he is in his time of grief and he supports me and my family.  Truly a product of his mother's love.  We were able to visit with many family members that I have not seen in ages.  Always good to see family but I do wish that it would have occurred under better circumstance.  I feel badly that I will not be able to go to the funeral to show my support.  My family has decided that my Dad will go to the services and the rest of us will head to the hospital for surgery.

Early Friday morning came quickly.  I am somewhat calmer than I have been for the other surgeries.  There is simply nothing that I can do to change the situation.  We did the usual routine and I picked up Mom and we headed to the hospital.  Unfortunately my doctor was running late so we had a pretty long delay for waiting.  I didn't sleep much the night before and I took my Xanax so a nap was easy for me in the waiting room.  My Mom, Chris, and I waited for me to be called up to pre-op.  A couple of hours later I was called and headed up with the nurse.  

My fear of surgery mostly falls in the pre-op and post-op areas, after all that is when I am awake.  The areas of the most concern are - getting the IV to allow for medicine, the fear of pain post-op, and the fact that it takes me a long time to get all the meds out of my system.  I am unable to get an IV in my arms so they need to use a different location.  My feet are still bruised from the double mastectomy and I am not looking forward to the anesthesia.   I get undressed and put on the lovely gown.  I still don't understand why I have to take my underwear off when there are working on the upper part of my body.  It just doesn't make sense to me.  Today I get the pleasure of working with my plastic surgeons 2nd year Fellow.  Super nice guy whose name I can never remember so I refer to him as Fellow #2 (not to his face).  He comes in and explains what all will be happening while the nurses are doing their thing.  Then the Anesthesiologists come in.  That's right I get two today.  One is tall and a little funky and the other is like his quite sidekick.  Not that he is an actual sidekick but Dr. Baker-Watson is providing the entertainment while Dr. Augustine is doing a lot of the work.  I explained the IV situation and the challenges that we had with getting the needle in my feet.  So they started looking at other areas on my body and ended with focusing on my neck...WHAT?!?!  you can get an IN in your neck?  Who knew?  With that decision they decide to do the procedure in the OR so that they can number the area and move quickly.  So off to the OR we go.

Upon rolling in to the OR I see a couple of residents, Fellow #2, and a nurse (she was cranky).  I had to laugh because the residents and the #2 were all on the iPhones.  I joked and said that one was on Facebook, the other was texting his girlfriend, and the third was checking the scores of a game.  They all laughed and guaranteed me that they were "working".  I slide over to the table and we are ready to go.  Dr. Augustine is in charge of placing the jugular catheter (fancy name for a neck IV).  He started on my left side.  "This will be a pinch and a burn."...one of the many lines I don't like to hear.  Once the area is numb they work on inserting the catheter.  He has many challenges with the left side so he decides that I should turn the other check and does the same thing on my right.  YIKES...if my feet don't work and my neck doesn't work where will they go next.  I'm starting to get nervous but talking with everyone and laughing at Dr. Baker-Watson.  I can't help but wonder why he has a hyphenated last name.  While my neck is number I can still feel the blood squirting when he is working on it.  I asked what was going on but was told that "everything is good".  Once the line is in and we are ready for the meds to knock me out Dr. B-W has a handful of drugs to insert in the line.  He has crazy music playing from the iPhone on his belt.  It is almost like he is trying to hypnotize me instead of give me drugs.  :)  I ask what each drug is and he explains all to me.  The last thing I remember is seeing a white milky drug that he is ready to insert.  I say "what is that".  He replies that it is Propofol the drug that knocked out Michael Jackson and with that I feel asleep.

The next thing I know I am in post-op and waking up to my family.  I feel like I have been hit by a bus again but it seems to be par for the course.  Dr. V comes to explain what all he did during surgery.  He was able to remove the dead skin and clean the area to try to prevent future infections.  He didn't have to reduce the size of the implant so that is a bonus and means that I will not have to have the left side re sized.  We wait a little bit and then head home.  Praying that the skin will be viable moving forward.

My Dad filled my Mom in about the services this morning.  Jason asked if it would be ok add me to the prayer intentions during the mass.  Of course my Dad appreciates this.  Dad got very emotional during the funeral and left the church crying.  While he was in the parking lot Jason followed him out and consoled him.  I don't know the details of the conversation but I do know that Jason holds an extra special spot in my heart for taking care of my #1 guy!  My Dad simply said that Jason is a truly special person and he got emotional while saying it.  Thank you Jason!  Hugs!

During the coming days I rested, measured fluid from my new drainage tube, and watched more tv.

Be well and hug your family today!

XOXO,

Sue





"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson - December 21- 31, 2012

"Dear George - Remember no man is a failure who has friends. Thanks for the wings! Love, Clarence." - It's a Wonderful Life

The days and nights are long for me. Too little sleep and too much tv. I spend most of my time in bed or on the couch. Its not like I can really do much to keep myself busy. It hurts to drive. It hurts to sleep. Taking a shower is complicated. Shopping takes too much energy. I'm a convalescent in my own home...BORING!  But not so bored that I am missing work.  :)

Mom and Dad visit daily. The mailbox is full of cards. I'm getting constant text messages. I shouldn't be bored but I can't help but think of all the things I would usually be doing this time of year. Baking, cleaning, shopping, parties...I'm missing all the fun but try to keep reminding myself that it is all for the best. I'm cancer free and should not be complaining about my life but I can't help it some days. When you spend so much time alone and in bed you get stuck in your head. I am definitely starting to get really stuck.

I have my weekly visits with my plastic surgeon to check my skin. It is looking worse each day. I keep adding the cream and taking antibiotics so that I don't get an infection. Fortunately, the skin does not cause any pain. I have little to no feeling in either of my breasts but my chest muscles are still killing me.

The Sunday before Christmas came and I met Steph, Gina, Kim, and Cindi for breakfast. Cindi and I had tried lunch and a little shopping last week. I did ok at lunch but zoned out while shopping at Best Buy and she had to take me home. We had a great breakfast and stayed at the restaurant for over two hours. While we all have crazy schedules (ok, I really don't right now) we have kept our friendships as a priority. After all, there is always time for family.

The day before Christmas Eve I had a visit from my friend Beverly. She's a wonderful caring woman and a GREAT cook. I met Beverly a few years ago when she was planning a fundraising walk to honor her granddaughter that lost her battle to cancer at a very young age. One of her sons in a friend of mine that I see when traveling to Atlanta on business and her daughter has become a friend through Cindi. Joliet is truly one of those places where everyone knows each other. A big town with roots that run deep and webs that are tangled. Beverly's visit was great. She brought a a box of different soups that she and her husband made. All in perfect size containers to fit in the freezer. Exactly what this girl needs right now. She also bought Xmas cookies from an exchange. I'm a lucky girl.

Christmas Eve came quickly this year. I am prepared for Christmas because I did not get carried away with shopping. Originally the plan was to have my parents bring Christmas dinner to my house but today we decided that we would all go to their house Christmas Day. I spent Christmas Eve with Stephanie. We enjoyed a Mexican feast that featured Beverly's amazing black bean soup. The fire was roaring and the champagne was cold. Just a simple night in sweats chatting with one of my best friends. WE laughed, cried, ate to much, talked a ton, wrapped up in blankets and relaxed. Pretty darn perfect. Feliz Navidad!!

Christmas day was at Mom and Dad's. Mom did a great job picking up my slack for the holiday. We had a really nice day. I didn't stay too long because I was ready for a pain killer. It seems so strange to spend much of Christmas in bed watching Downton Abby but I needed the rest.  I spent Christmas day with some of the most important people in my life and Christmas night cuddled with my four legged family.

I dug into my gift cards and Christmas money to go shopping at Best Buy the day after Christmas.  I know...CRAZY!  But it really wasn't that bad.  I wanted to look at cameras.  I broke my camera at a wedding over a year ago.  Well, my purse strap broke and the purse dropped to the floor with my camera inside.  So I have been wanting a camera for sometime. The iPhone can only do so much.  The shopping was overwhelming.  So many cameras and so little knowledge on my end.  Fortunately one of the sales guys was great and there was a camera that had been returned and now has an open box deal...perfect...sold!  Thanks to my WE!  I think the cats are ready to move out because I keep taking their pictures while I learn to use the camera.  Here's the first picture.

Sweet little Henry.

First self portrait.  Ok...I need to read the user's guide.


December 27 came with a visit to the plastic surgeon. PRAYING that my tubes would be removed. These things are hard to hide and annoying. DR. V took one side and Jason (Dr. Levine) took the other. I simply say there and hoped that it would not hurt too badly! I didn't pass out so that is a plus! Dr. V is still concerned about the black skin and wants me back on New Year's Eve. He is going on vacation and I will see whomever is covering his day.

Drainage tubes....UGH...get these things out of me.


Still in bed most of the time. I went to Loyola on NYE. It was a really quite day there with only about 6 people in the waiting area. There's a lady that I see almost every time that I have an appointment. We must be on the same routine. I will find out later that she was the patient after me on surgery day, December 12. I see one of Dr. V's associates. He's dressed to the nines (really, what does that mean?) and very kind. Seriously, those have to be some of the best shoes I have seen on a man! I am so used to Dr. V being in scrubs. The associate is VERY concerned about my skin. He puts me on a higher dose of antibiotics and wants me back in the office the day that Dr. V gets back from vacation. UGH...why is this all happening? I stop by the store on the way home to pick up stuff for the Papesh's NYE party tonight.

NYE is spent with my closest friends and their families. A simple night of laughing, eating, and love. I didn't "see the ball drop"...I was home and in bed by 10 PM. I hear things were hilarious after I left. I hate missing out on things but I am smart enough to listen to my body.


Some of my favorite people in the world!  My WE!

Jake being well, Jake.  Not amused with my new camera. He really does like me!

The kids playing the game of Life.  

Me and Geeeennnnaaa!!


I have never been more excited to end a year. 2012 was a tough one! I am happy to have it behind me but I took a lot of time to reflect on all that has happened. Tears rolled down my face as I went to bed tonight. I think that they were mostly tears of peace. While I didn't want to face cancer again I have counted my amazing blessing along the way.
  • My family is wonderful...where would I be without their support.
  • Amazing people have allowed me to be a part of their lives. I have great friends.
  • I've learned to say more "I love yous" and give hugs with abandon. Who would have thought that would happen?!?!
  • I continue to learn to love myself for who I am.
  • I appreciate each day that my feet hit the floor.

"Dear George - Remember no man is a failure who has friends. Thanks for the wings! Love, Clarence."

Cancer and all...I truly do have a wonderful life. I'm not the richest, the prettiest, the smartest...but I just might be one of the luckiest.

BRING ON 2013!!!

XOXO,

Sue

Ready for our close up!  ;)

“Mirrors should think longer before they reflect.” ― Jean Cocteau - December 20, 2012

“I've been poked and prodded in places I'd always prided myself on keeping untouched for that one special doctor who gives me a ring and a promise someday.” ― Libba Bray

I woke up in a better place today. I'm still in a lot of pain but I see ALL three of my doctors today and hopefully one will help me battle the situation. I'm up early to get showered, drain the tubes, and prepare to leave for Loyola. This will be my first time in a car and I'm pretty nervous. Still no driving for me so I have my "responsible driver" my Mom. We head to the hospital for a full day of appointments.

First off I meet with the plastic surgeon and his team. I'm happy to see Jason (Dr. Levin)...he doesn't know that I call him Jason but I do. He was so sweet while I was in the hospital and I find him comforting. The doctor removes my bra and all of the badges. I get a little flushed with the blood flowing after being compressed. I'm super excited when they also decide to remove one of the tubes. It isn't one that is producing much drainage so they take it out. AS bad as keeping a drain in is as bad as it is to take it out. They clip the stitches and then start pulling...it is the oddest feeling of something slipping through my breast. My doctor is happy with my results. He thinks that almost everything is healing well and looking good. Unfortunately I said almost everything. There is a spot on my right breast that is not healing well. In the area of the stitches there is a section that is turning black. The fear is that I have necrosis of the skin...not good.

Necrosis (from the Greek νεκρός, "dead", νέκρωσις, "death, the stage of dying, the act of killing") is a form of cell injury that results in the premature death of cells in living tissue.[1] Necrosis is caused by factors external to the cell or tissue, such as infection, toxins, or trauma that result in the unregulated digestion of cell components. In contrast, apoptosis is a naturally occurring programmed and targeted cause of cellular death.

In case you don't remember, this is my second battle with breast cancer. For me, that means that I had radiation almost 12 years ago on my right breast. Who would think that radiation that long ago would impact my life today? Well, apparently it does. So many things have come back to haunt me. Today it is my past treatment. According to my doctors, radiation causes the tissue in the body to change. In my case it caused my breast tissue to change and the skin to change for the long-term. To look at my skin before surgery you would have never known. It looked perfectly normal. I knew that the tissue changed because my right breast never grew again. It stayed perky and where it had been. Not what I can say for the other one. I had know idea that the radiation would potentially cause my skin to die (necrosis). I must have missed that in the small print. So here I am at the doctor's office sitting on the table and getting educated on the possibility of tissue death. WHAT!?!? That was NOT in my plans. He has high hopes that it will not happen but there is a 50/50 chance. Let's face it, I do not like odds...odds are now n my favor at this stage in my life. I leave the office with prescriptions for a new painkiller and Silvadene. It is a cream that is used for burn victims. Ideally this will help to heal my dying skin. Fingers crossed. I'll be back soon because they want to keep a close eye on the skin to make sure that it doesn't "breakdown"...this means that it may actually open up and I will be able to see my implant...YIKES!!!

Here's a picture of the area that is dying...don't worry I cropped out most of the breast.


Before I get dressed to move to next appointments I look in the mirror to see my new breasts for the first time. The badges have finally been removed and I get to see the work that was done. My eyes fill with tears. I don't know what I was hoping to see but I see two mounds on my chest, straight incision lines across each of them, extensive swelling, odd folds of reconstructed skin on the side, and no nipples. I've looked a hundreds of pictures but I was not prepared to see the reality of mastectomy. On the positive side, they are pretty much the same size...I have not have the same size breast for years. My right breast no longer grew after radiation and my left breast continued to grow larger and lower. I hated my breast but at least they were mine. I little over 2.5 years ago I actually did lipo on my left breast to even things out. It only worked for a few months but they were really good months. So these may not really feel like mine or seem like they are a part of my body but at least they are pretty close to the same size...little miracles that bring joy to me in the dark times.

My next stop is with Dr. Robinson so we head to the cancer center. I have not seen her since I was in recovery and in the hospital, but I had a check up since my last chemo on Oct. 25. She is as great as always. I bring her a little Christmas gift and we spend some time chatting. Once we catch up she does her exam and we discuss my pain. I tell her the drug that Dr. V suggested and she quickly said not to fill it because she would get me something stronger that has the potential of working. She things the reconstruction looks great but she is also very concerned about the area that is turning black. UGH...not good news for me. She did have some good news and it does appear that they have gotten all of the cancer. I guess we will really never know completely but at least this is a good start. All of the pathology reports came back good with clean margins...not sure where the margins come from since they took ALL of my breast tissue. Hmmmmm?????

I stay in the same room and wit for Dr. Godellas, my surgeon. Love him to death but he is not exactly prompt. The waiting goes on and on and on. My poor Mom is in the waiting room and I am sitting in an exam room bored and in pain. Finally his main nurse comes in and does a check up and then I wait again for Dr. G. At this point I am exhausted and ready to crawl back my bed. He finally arrived and did the 4th check up of the day. They are really do the same thing but I guess they are looking for differences. Like the others, Dr. G is concerned that blood is not flowing to the skin in the reconstruction area. He seems pretty confident that it will not work but Dr. V is the man in charge.

So I leave Loyola with a pit in my stomach. I will spend the days adding cream to the potentially dying skin, massage the area to increase blood flow, and come back in a week to see what type of progress is being made. Ohhhh...and I really must start looking for a radiation oncologist. I wish I felt better so that I could really do my research.
Home alone. Mom is staying at her house and I am staying alone. There's a large box of Xmas gifts from Danielle...fun things to open to keep me busy. She always gets carried away. I have great people in my life! Time to watch too much tv, maybe sleep, and work on managing the pain.

Danielle likes to overdue things!  ;)

Beautiful flowers to brighten up the house.


Sleep well!

XOXO,

Sue