"Don't spend time worrying about how you are going to die. Worry about how you are going to live today"

Thursday, July 24, 2014

I Got The Text This Time

Last time someone I know was diagnosed with breast cancer, I got the phone call for help and information.  A few weeks ago....I got the text.  A good friend's mom was diagnosed with Stage 3 triple negative breast cancer.   This was hard for me to take since one of my good friends of over 15 years just finished treatment the week before.  My heart sank again. 

Every time someone I know gets diagnosed I get angry.  Why can't there be a cure for this beast?  It deeply saddens me to know that someone else has to live with the reality of breast cancer and the fear that is associated with it.  Since my own diagnosis I have had many friends and acquaintances get diagnosed.  Breast Cancer is EVERYWHERE!  I just never knew how prevalent it was.  Now it touches my life in so many ways and far to often. 

I continue to pray every day for a cure or even a vaccine to prevent the disease from ever happening again.  For now I also continue to offer support and an ear to those going through diagnosis and treatment.  Since starting this blog I have talked to many women - especially those using cold caps through chemo.  It makes me feel good to give back and to offer hope to someone that is holding on by a thread.  I hope one day I won't have to help anyone with breast cancer because it no longer exists.

Cold Cap Success Story!

I have had the opportunity to meet many cold cap users over the past three years and occasionally one is willing to share her experience and story on my blog.  I am pleased to share another story about someone's experience using Penguin Cold Caps.  I hope this helps other women realize they have a choice while going through chemo and that cold caps REALLY DO WORK!  

Here is her story in her words:

There are many reasons that women (and some men) use Cold Caps.  My decision to use the Caps stems from my desire to avoid the added trauma of seeing myself bald.   I recognize that my emotional and psychological wellbeing is important and deserving of care.  The diagnosis and treatment of breast cancer is traumatic in of itself.  Throughout this ordeal I have made it my mission to avoid and reduce as many side effects as I can.  This, of course, included my efforts to save my hair.  The caps were also a welcome distraction from the cancer.  Chemo can be frightening.  I was too busy trying to save my hair to think about the chemo.  I had four rounds of TC and ultimately saved 50% of my hair.  The regrowth of lost hair is happening quickly.  I use Biotin and Liquid Silica to help it along. 

It is important to have realistic expectations when using the cap.  Most people do lose a substantial amount of hair but never need a wig or scarf.  I’m really not the type of person to wear a wig and imagine it to be hot and itchy.  My hair thinned a lot but the regrowth is filling in quickly.  The downside of capping is the expense and the added effort.  It is a labor intensive project that requires assistance from others.  In the end, however, I am very happy to have kept enough of my hair that I can look in the mirror each day and not feel the distress of alopecia.

I am truly grateful to my friends who accompanied me to each infusion and managed my caps.  I call them my “Mad Cappers”.  They actually made chemo fun.  We had a nice spread for lunch and they entertained me with stories and jokes.  My final infusion was a chemo party.  Here is the video:   http://www.magisto.com/video/P10aJEgWGj4rDxNpYw    I also appreciate the help and advice I’ve received from other Cold Cappers.  Although I was skeptical about my about the efficacy of the caps, it was the photos on breastcancer.org and Maria’s blog that convinced me.  Thanks Maria!

If you wish to contact me, I am on breastcancer.org and my handle is Warrior_Woman. 

Wednesday, June 25, 2014

Getting Over it is Not That Easy

I was talking to my friend that just finished treatment for breast cancer a few weeks ago and she said something that got me thinking.  She said "I did treatment and now I am just suppose to move on like nothing happened?"  I can totally relate to what she meant.  Moving on after hearing the words "you have cancer" is NOT that easy. 

What most people don't realize is that breast cancer leaves major emotional damage.  Your life is never the same after you find out you have a non-curable, deadly disease.  For a long time thoughts of my breast cancer were a huge part of my day.  I could not simply forget what I went through.  When I got dressed in the morning, I could see the scars.  When I went to lunch with friends, I could not eat the hormone infested foods.  When I went to the grocery store and was offered a sample of something that contained hormones, I could not try it.  When I go to the gym and see women in the locker room with "normal" breasts, it reminded me I would never have "normal breasts" again.  When I get up in the morning, I take the anxiety medicine I need to have since my diagnosis along with my tamoxifen which will hopefully help prevent recurrence.  When I answer my phone, it is one of my many doctor offices calling to confirm one of my many appointments. I could go on and on about all of the many daily reminders of breast cancer...there are so many. 

Despite these things, I have tried very hard to "move on" with my life and live it.  I don't sit around and think about breast cancer all the time like when I was first diagnosed, but I do have my own independent thoughts of breast cancer throughout the day that are not triggered by the things I mentioned above.  It is just something you can't escape. Even though there are so many daily reminders, I am doing OK. 

What most people don't realize is that there are lingering issues from breast cancer that don't allow some patients to simply "move on" with their life.  The reason they can't just "move on" is because they are still living it every single day.  There are some things that you just can't "get over" from this disease.

I am very fortunate that I did my treatment and reconstruction surgery and did not have any real challenges.  I healed well.  What's hard for me is talking to my friends that were not so lucky.  I have friends that started this journey over three years ago with me and they are still in the middle of it all.  They have had lingering problems that prevent them from "moving on".

One of my dear friends had a horrible plastic surgeon.  He totally botched up her reconstruction surgery.  She then had to find a new surgeon and start all over again.  When she did her second reconstruction, her body didn't heal easily.  She got infections and it took a long time to recover.  While she loves her new breasts, she wanted to look more normal and decided to get nipple surgery.  That caused problems and she got infected and had to have additional work done.  Since her diagnosis she also had to have a hysterectomy among some personal challenges in her life.  She started this journey with me over three years ago, and she is STILL in the middle of it.  Emotionally, she is exhausted.  I would be too.  My heart aches for her.  It's not fair.  She needs her life back.  She still continues forward, simply doing what she needs to do to get through this.  At times in her life, people that don't "get it" make insensitive comments, acting like she is doing this because she wants to.  How horrible.  NO ONE wants to do this!  It sucks!  She is merely doing what she has to do to get through this.  It has been a long, exhausting and draining battle for her.  She wants her life back.  From the outside, you would never know.  She looks amazing.  This is what is going on inside though.  This is the reality of breast cancer.

I have another friend.  She was diagnosed over seven years ago.  She had bilateral mastectomy and reconstruction.  Her surgeon also left her with uneven, horrible new breasts.  After years of suffering with these, she opted to work with a new surgeon to fix things.  This time her body rejected the implant and would not heal.  She has had 4-5 surgeries since November (yes, less than a year!!!).  She finally had to go with a different type of reconstruction (a flap) and had healing issues with that.  She just had an additional surgery a few weeks ago.  It has been over 7 years of this crap she has had to endure.  Breast cancer sucks!

I have two other friends that are dealing with the lasting effects of chemo.  Their doctors neglected to tell them that the taxotere chemotherapy can cause permanent hair loss.  Both friends suffer with hair so thin you can see their scalp and bald spots.  One friend use to be a runway model in her younger days.  She had beautiful hair and her doctor assured her that her hair would be beautiful again after chemo.  She has suffered emotional trauma because of the hair loss.  It is a constant reminder.  She has to cover her bald spot every morning with topix.  She has to disguise the bald areas.  Her hair has to stay short because it will no longer grow longer than an inch in areas.  She is devastated.  How can you just "move on" when there is no hope of ever having hair again???  She has to live with this for the rest of her life.  She is angry.  Others around her don't seem to understand why she just can't "move on" or "get over it".  Could you???  She had asked her medical oncologist about using cold caps before chemo but they would not let her. They assured her she would have hair again but she doesn't.  She has been dealing with this for almost three years now.  She will deal with it for the rest of her life too. 

There are so many women that have tried to "move on" after treatment, but sometimes it's just not possible because you are still living it every single day.  In addition to living through the surgeries or permanent hair loss, you still have all the reminders I deal with on a daily basis. How does one live in that world and "get over it"???  I wish I knew. 

As I always say, "breast cancer is the gift that just keeps on giving".  It's so true.  While I am fortunate my world is a bit brighter than some of my friends, I continue to be a support to them and be there for them through the dark times.  I don't expect them to "move on" or to "get over it".  This is still very existent in their world.  They need the support of friends that "get it" and will just listen.  Breast cancer has given me wonderful friends that I would never have met if I were not diagnosed.  For that I am thankful. I cherish those friends and hold them close to my heart.  I will continue to support them and be there for them.  We are forever bonded. 

Friday, May 2, 2014

Cold Cap Therapy Clinical Trials

Well it has been forever since I posted.  I guess that is because as I said before I am just busy living life.  This week marks three years since I finished chemo.  In some ways it feels like yesterday, but in other ways it seems so long ago.  Either way, I am grateful every day for my health and the life I have.  Life is good!  Here I am today!

I continue to support those going through treatment for this dreaded disease and offer hope.  I wanted to share some information regarding clinical trials for cold cap therapy that are going on.  I know many of you that read my blog read about my experience with cold caps.  I hope this information helps someone out there that is interested in giving the cold caps a try.  I used Penguin Cold Caps, but there is another cold cap company enrolling patients in clinical trials:

Information about Dignicaps:
Plus a recent CBS TV News story about them:
Below is the government webpage with information about the Dignicap Trials and where to contact the hospitals and doctors involved:
There are two locations in New York City, one in San Francisco and one in Winston-Salem, NC. The cost of using the Dignicaps as part of the trial is nothing. It is hoping to enroll 110 people by September 2014.
United States, CaliforniaSan Francisco, California, United States, 94115Contact: Hope S. Rugo, MD 415-353-7428 hrugo@medicine.ucsf.edu Principal Investigator: Hope S. Rugo, MD United States, New YorkNew York, New York, United States, 10065Contact: Tessa Cigler, MD 617-821-0726 tec9002@med.cornell.edu Principal Investigator: Tessa Cigler, MD New York, New York, United States, 10011Contact: Margarita Gilyadova, MD 212-367-0181 mgilyado@chpnet.org Principal Investigator: Paula Klein, MD United States, North CarolinaWinston-Salem, North Carolina, United States, 27157Contact: Susan A. Melin, MD 336-716-2839 smelin@wakehealth.edu Principal Investigator: Susan A. Melin, MD
Ages Eligible for Study: 18 Years and olderGenders Eligible for Study: FemaleAccepts Healthy Volunteers: No
Inclusion Criteria:
  • Female patients >/= 18 years of age
  • Documented diagnosis of stage I or II breast cancer
  • A planned course of chemotherapy in the adjuvant or neoadjuvant setting with curative intent including one of the following regimens:
    • Doxorubicin 60 mg/m2 and cyclophosphamide 600 mg/m2 x 4 - 6 cycles IV every 2 - 3 weeks
    • Docetaxel 75 mg/m2 and cyclophosphamide 600 mg/m2 x 4 - 6 cycles IV every 3 weeks
    • Paclitaxel 80 mg/m2 weekly IV x at least 12 weeks with or without IV trastuzumab
    • Paclitaxel 175 mg/m2 IV every 2 weeks x 4 - 6 cycles (without an anthracycline)
    • Paclitaxel weekly and carboplatin AUC 2 weekly or AUC 6 every 3 weeks IV x 4 - 6 cycles and trastuzumab IV weekly or every 3 weeks
    • Docetaxel 75 mg/m2 and carboplatin AUC 6 IV every 3 weeks x 4 - 6 cycles and trastuzumab IV weekly or every 3 weeks
    • Targeted agents such as trastuzumab or lapatinib are allowed
  • Plan to complete chemotherapy within 6 months
  • At least two years out from the last chemotherapy causing hair loss with complete recovery of hair
  • Karnofsky performance status >/= 80%
  • Willing and able to sign informed consent for protocol treatment
  • Willing to participate in study procedures including having photographs of the head before the first cycle of chemotherapy and 1 month after the last chemotherapy
  • Willing to enroll in an extension protocol for follow up for 5 years following the end of chemotherapy treatment
Exclusion Criteria:
  • Patients with female pattern baldness resembling picture I-3 or higher on the Savin scale
  • Autoimmune disease affecting hair; e.g. alopecia areata, systemic lupus with associated hair loss
  • A history of whole brain radiation
  • Plans to use a chemotherapy regimen other than those specified in the inclusion criteria. Specifically, patients receiving a regimen including both an anthracycline and a taxane are not eligible for this trial (AC/T, EC/T, TAC, etc.)
  • Concurrent hormone therapy with chemotherapy. Hormone therapy should be used as indicated following completion of chemotherapy
  • Underlying clinically significant liver disease including active viral hepatitis with abnormal liver function tests >1.5 times the upper limit of normal, including alkaline phosphatase, AST, and total bilirubin. Patients with Gilbert´s disease (elevated indirect bilirubin only) will be eligible for participation.
  • Clinically significant renal dysfunction defined as serum creatinine > upper limit of normal.
  • A serious concurrent infection or medical illness which would jeopardize the ability of the patient to complete the planned therapy and follow-up
  • A history of persistent grade 2 (or higher) alopecia induced by prior chemotherapeutic regimens
  • Participation in any other clinical investigation or exposure to other investigational agents, drugs, device or procedure that may cause hair loss
  • Intercurrent life-threatening malignancy
  • A history of cold agglutinin disease or cryoglobulinemia.
  • Evidence of untreated or poorly controlled hyper or hypothyroidism
  • A history of silicon allergy
  • American Society of Anesthesiologist Class ≥3

Wednesday, January 22, 2014

I Got The Call

Since I got diagnosed with breast cancer three years ago and learned that one in eight women will get breast cancer over the course of their lifetime, I have been worried about my female friends and family.  I keep wondering who will get it next.  Maybe that seems morbid, but I have more than eight women that are an important part of my life so I know in time there is a very real possibility that someone I care about will get breast cancer.  Last week that fear came true.  I got the call from a good friend that I have known for over 13 years and she told me she had been diagnosed.  My heart sank.

My good friend Emily is a mom and wife.  She is a great person.  She's caring, funny, supportive and an awesome mom to her two college aged kids.  She was so kind to me when I was going through everything.  She always listened and offered comfort.  As I type this, I still can't believe she has to go through all of this. 

Since hearing her news, it has made me go back to the first days when I was just diagnosed.  Her comments sound like exactly what I experienced.  She said yesterday "I just can't believe this is really happening to me".  I remember feeling the same way.  The shock and disbelief combined with the fear was enough to make anyone go crazy.  The uncertainty about what was to come and what it would feel like was intense.  It was so hard to accept that I actually had cancer. 

Now as dear Emily moves forward through this journey I will be there for her and her family.  I know what they are going through and hope I can offer comfort and hope that there is life beyond breast cancer.  Where I am now in life is a far cry from where I was three years ago.   I hope she can see that and look to the future in a positive light.

Tuesday, December 10, 2013

Three Years

Three years ago this week, I was diagnosed with breast cancer.  It's still hard for me to write those words "breast cancer".   In some ways it seems like yesterday but in other ways it seems so long ago.  Sometimes it almost feels like it never really happened but then I see myself when I change clothes and see the "new me" and then there is proof it really did happen.

I am trying to reflect on all I have gone through since my diagnosis and how it has change me and my life forever.  In many ways, life it back to normal but there are some things that will never be "normal" again.  Breast cancer can change so many things if you are the person that lived it.  For those around me it's like it never really happened and they forget and think it's all over.  For me, breast cancer will never be completely "over". 

As of now (as far as I know) I don't have breast cancer.  The odds the doctors gave me were good, but most of the studies they quote from refer to the possibility of recurrence within ten years.  I plan on living more than ten years, so what happens after these ten years are up???  What are my odds then?  I don't think they really know.  It's hard to live in terms of odds for the remaining seven years!

I have lived to see many women have recurrence years out from their diagnosis.  Sometimes it can be twenty years later.  I feel like all of the treatment I have done is just to "buy time" until additional treatments are available if and when the breast cancer returns.  I continue to read about new potential medications and treatments and every day I pray for a cure for breast cancer.  I hope I live to see the day where no one must die from this horrible disease. 

I would like to think it will never return, but I am a realist.  The thought still lingers in my mind but the major difference now (three years later) is it is not a part of my life every moment of every day.  I do still think about my breast cancer everyday.  There are too many reminders, but I think of it a lot less than I use to which is great.  I can actually sleep at night without the help of medication.  That is quite different than it was three years ago!

As the holidays approach, I clearly remember going through my diagnosis privately and putting on the "happy holiday face" until I could tell my family and friends when the holidays were over.  This time of year is hard for me as now it has memories of breast cancer.  It's hard not to think about it because I remember living it.  I try to continually be positive about my future and not fixate on recurrence.  I will continue to "live in the moment" and focus on the things I can do to stay as healthy as possible.  I will continue to love my family and friends and see the good in the world.  I will have faith that I will buy time until there is a cure for breast cancer and live to grow old with my husband.  For now, life is good....really good!  A far cry from three years ago!  I never thought I would be here, but I am!  Yay!

Tuesday, August 20, 2013

Living The Life I Always Imagined

I remember when I got diagnosed with breast cancer it changed everything.  I felt like maybe there were things in my life that I should just give up on pursuing because of the breast cancer.  One of the things I gave up on was expanding our family.   Since I was an "older" mom (I had my son a few months before turning 41 years old) I never thought I would naturally give birth to another child.  I was not ready to immediately get pregnant and have another baby right after he was born, but wanted more children.  I always figured my husband and I would adopt a child in the future.  Maybe we would not adopt a baby because of our age, but perhaps a child close in age to our son in a few years down the road.   I always saw us expanding our family in some way. 

Once I got diagnosed, I knew I could not have more children (but by then I was already 45 and the hormones would not be good for me) but I felt some strong hesitation to even adopting. I guess I just don't want to make things more difficult for my husband should I have to deal with breast cancer again.   I know if it comes back it's going to be far worse than my first diagnosis.   It sadden me to think that I was giving up on the family I always wanted to have.  For a while I just accepted it even though it made me sad and angry at times.

Then I realized there were other ways to expand our family.  We looked into hosting a foreign exchange student.  This would be a great way to give our son the experience of having a sibling, but not a permanent situation so I would not worry about making things harder for my sweet husband if I got sick again.  So, we applied last spring and went through the process and were accepted as a host family!  It was all so exciting and the anticipation of a new child in our home was amazing. 

I am happy to say that we now have a daughter from Italy!  She is 17 and a senior in our local high school.  She is beautiful and smart and we all adore her.  She has been with us for almost two weeks now and it feels natural.  We have been emailing each other weekly since April and in that time I have gotten to know her and her mom very well.  Her mom is also a breast cancer survivor too (for 7 years now).  We have even spoken about how she felt when her mom was diagnosed and going through treatment.  This has made our bond even closer. 

I am living my dream of having a daughter - even if it is only for a year.  I just somehow feel a sense of happiness that my dream is coming true of expanding our family.  Sometimes you get what you want, but it doesn't look the way you imagined it would be.  It's still good though!  Both of my kids are off to start school tomorrow.  I am excited for both of them and hoping for a great school year.   Life is good....even after breast cancer!!!!