Breast Cancer Won't Define Me

Surgery Was A Breeze

2013-04-20T06:49:00.001-07:00

Yesterday I had the oophorectomy surgery (ovary removal). It's funny but after all I have been through I was not even nervous at all. It seemed like no big deal. Normally surgery would freak me out but after having breast cancer and all that comes with it, other things don't seem like such a big deal.

My husband took me to surgery yesterday. The nursing staff was great and once they put medication in my IV I didn't remember a thing. I didn't even remember being wheeled into to operating room. Next thing I remember I was waking up. I didn't really have pain either. That was a surprise!

My biggest thrill was not having nausea and vomiting after surgery. Usually I get super sick from anesthesia and throw up for a whole day. It was a pleasant surprise to feel OK after surgery and not feel like puking! That put a smile on my face!

I was home from the hospital by 11:30am and spent the afternoon chilling out on my couch. I napped off and on and woke up feeling rested this morning. I have not had to take any pain medication either. I could not have asked for a better surgery experience! I am glad it's over with though!

More Surgery...This is Nothing!

2013-03-26T10:17:00.001-07:00

Well I have still been busy living life and loving it so I have not posted much. I am doing OK but as the title says, I need more surgery. I need to have my ovaries out....joy hu? There is a cyst that just won't go away and my doctors want to be very thorough with things given my history with breast cancer so out comes the ovary. Since I am having one ovary out and estrogen is not my friend, I decided to have both ovaries out to further reduce any estrogen in my body.

What's funny is having surgery doesn't even scare me. I guess you put it all in perspective with what I have already been through, and this means a laproscopic oophrectomy seems like nothing. My surgery is next month and the recovery should be pretty easy from what I am told.

So I got excited that I would have less estrogen in my body since my breast cancer was fueled by hormones but then my medical oncologist took the wind out of my sails. He ordered a DEXA scan to get a baseline on my bone density. The results indicated I have osteopenia which is a precursor for osteoporosis. I am only 47 years old! That was a huge shock. I already exercise, maintain a low body weight, eat healthy, don't smoke, avoid processed foods, take calcium, etc.....how the heck did I get osteopenia? I guess this will be another question I will never know the answer to.

Now that I have osteopenia, I will most likely not be able to switch to an aromatase inhibitor (which is what post menopausal breast cancer patients take if their tumor was estrogen dependent) which offers the best protection from recurrence. The aromatase inhibitors can directly affect bone density and since I am at risk already, this is probably not the best choice for me. I guess I may stay on tamoxifen which does not effect bone density but is a little less effective in post menopausal women. This is so frustrating.

I am off to see an endocrinologist to discuss my bone density issues and see what they recommend. Looks like I will be put on some type of medication to help with my bone density. I feel like an old lady! I take pills daily and go to the doctor all the time. So now I have a whole list of doctors: medical oncologist, plastic surgeon, internist, gynecologist and endocrinologist. I also have an orthopedic sports medicine doctor and am doing some physical therapy for a hip injury a few times a week. Crazy! Isn't this what old ladies do??? LOL!

Oh well. Either way, I am thankful for the overall health and life I have now. I will continue to do what I can to stay healthy and hopefully live a long life. Each day is a gift and can be filled with joy if you let it.

Just Busy Living Life

2013-01-16T07:34:00.003-08:00

I feel bad that I have not posted in a long time, but as the title of this post says "I have just been busy living life". That's a good thing right? I guess what I mean by that is I have not had as much time or focus on thinking about breast cancer as much as I use to. I have been very actively starting my art business (that was my 2011 New Year's Resolution - yikes!) that I have been behind on. I am also working on decorating our new home. I volunteer at my son's school art class and teach fitness programs for the kids sometimes after school. I am on the PTO (never thought I would say that!) and help raise money for the school. In addition, I continue to help newly diagnosed breast cancer patients by talking to them and offering encouragement (I talked to three newly diagnosed women just this past week!). I also write letters new newly diagnosed women through Girls Love Mail (link at bottom of my blog).

As I think about all that has transpired in the past two years since my diagnosis, it is a lot to take in. So much has happened at times it's hard to comprehend. For me though, I continue to try to move forward in my life in a healthy, positive way. I am to a place where breast cancer DOES NOT define me. It is something that happened to me - but it is not who I am. I really believe that now. I don't know when I got here in my thoughts, but it is a GOOD feeling.

I know I will never truly be free from breast cancer. It will always be a part of who I am, but as time goes on it becomes a smaller and smaller part of me. For that I am grateful. Life is amazing and I am so happy. I won't let breast cancer rob me of that every day. I won't be defined by breast cancer or the fear that comes with it. I just won't! I guess that is why I don't post as much anymore. I am just busy living life! I hope that anyone newly diagnosed or at the beginning of the breast cancer road holds on to this post and keeps the faith that they will feel this way too one day.

It's Been Two Years

2012-12-07T18:37:00.002-08:00

As I looked at the calendar today I realized that tomorrow it will be exactly two years since the whole breast cancer thing started. Two years ago they told me "it no longer looks consistent with something benign". I can still remember the exact words. I can still remember that beautiful, clear, sunny December day when everything changed. Sometimes I can't believe it all happened and other times it seems so real.

When I look at my life now, it could not be any more different than it was when I was diagnosed. If you told me two years ago that I would quite my career, stay home, do volunteer work and be a soccer mom I would have laughed. Now, that is my reality. It's a far cry from the type A, career driven working mom I was before.

The other day I was driving in my car and thinking about my life now and just thinking how incredibly happy I am. I love my new life. I feel such joy everyday. I feel like a completely different person than the woman I was before breast cancer. I am glad that I get to experience this level of joy in my life, but feel sad that it took breast cancer to get here. I know I can't change that so I don't dwell on it, but I just wish I could have gotten here a different way.

The other thing I thought about is "will this all come crashing down"? Life feels so good now....will something come along and destroy that? I know that sounds negative, but life seems too good to be true at times. That scares me.

As I think about how I felt at the beginning of my diagnosis, how I felt one year after diagnosis and how I feel now I realize just how far I have come. I have found a place in my life where I believe in myself and don't live in fear every minute of every day. I am focusing on enjoying my life. I am not focusing on breast cancer. I have learned so much from my experience that I continue to try to support those that are behind me on the breast cancer road. I want to offer them a bit of hope when things seem so hopeless, just as others did for me.

Two years after my diagnosis, I have to say that life is great. I am happy. I feel healthy. I continue to pray for a cure for breast cancer and especially for those not as fortunate. Please God, let there be a cure.

Deja Vu

2012-10-29T17:55:00.002-07:00

Yes, it has been a long time since I posted. I guess the more time that goes by after diagnosis and treatment, the more "normal" life becomes again. That is a good thing considering how difficult it is to walk through all the steps involved with breast cancer. I remember it being so "all consuming" and such a part of EVERY minute of my day. I am glad that as time has gone on, it has become less consuming and a much smaller part of my day.

We just returned from our yearly Bahamas vacation. We have gone the past several years, but didn't go last year because of my treatment and our move out of state. The last time we went was shortly before I was diagnosed with breast cancer. When I would look at the photos from that trip before my diagnosis, I just got sad because life was "normal" back then. Now everything is different. I mourn living in a care-free way and not worrying about cancer. Maybe I was just naive back then and thought I was invincible or something. Either way, I feel sad that breast cancer has changed my life forever.

When we went on our trip last week, it was like a big "deja vu". I felt so much more normal. I felt like it was just a "normal" vacation. I can't say that I never thought about breast cancer, but I can say that I didn't think about it all the time. Strangely, it felt like my old life and our previous trips to the Bahamas. That was refreshing for a change!

The other thing I noticed is how my perspective on things has changed. Maybe it's the whole breast cancer experience, or perhaps the Effexor I take, but I am so much more laid back about things than I use to be. Hurricane Sandy hit the Bahamas while we were there and I just went with the flow. I am not sure the old me would have done that. My poor husband was stressed and complaining a lot about the storm ruining our trip. I kept saying "go with it...you can't change it, so let's have some fun spending time together!" I had to keep reminding him of that for those few days. That was strange to hear myself (former "type A", high strung person) telling him to chill out! That was not a "deja vu" moment by any means, but it was nice to not worry about it. I guess given what I have been through, hurricane Sandy is nothing!

I hope anyone newly diagnosed reading this finds hope in the old saying that "in time things will get better", because it's true. I never thought I would be able to say that, but here I am putting it in print. I hope time continues to allow me more and more "normal" life experiences and much less time spent thinking about breast cancer. Life IS going on every day and any time I spend worrying about all of this is time wasted. I have to remember that in those little moments of breast cancer panic. I hope to continue to have "deja vu" experiences that remind me of my pre-breast cancer life.

A Dose of Just What I Needed

2012-08-24T14:01:00.000-07:00

I have been so busy all summer living life and being at home with my son, I have not had as much time to dwell on breast cancer and all that comes with it. Now that my son is back to school, I am trying to get back into a routine. This morning started like any other morning. I was up early, got dressed, got my son up and dressed. We had breakfast and then I got him off to school. I sat here at home getting ready to hit the gym and then it hit me......it was just a "normal morning" the day I was diagnosed with breast cancer. It started like any other day, but it was NOT like any other day. I guess my anxiety was getting the best of me today since I had my three month medical oncology appointment today.

My mind kept racing with crazy thoughts. What if my blood work reveals something bad? What if the doctor notices something bad? What if today is another day that is NOT like any other day? All of my fears of breast cancer and what I have been through came rushing back all at once. I was left feeling emotional and stressed out. I went to the gym. I did not feel like running today, but I did anyway. I guess the stress really pushed me. It was the first time I have run 6 miles in less than 60 minutes! I didn't even have a cramp in my side. I guess I was really wound up from all the breast cancer thoughts.

When I left the gym, I sent a text to my dear friend Shannon (one of my Bosom Buddies - we went through this crap together). I asked her to call me as I was having a rough day. Within minutes, the phone rang. We talked about all of this. She put me at ease and helped me talk about my fears. She "got it" as she has the same fears most of the time. I chatted with her until I walked into the medical oncology office. (Gosh am I grateful for Bosom Buddies!!!)

My doctor appointment went well. He said my blood was "pristine." That was a great way to start off the appointment. At one point I said I wanted to review some current clinical trials for treatments that may help improve my odds. He seemed a bit taken back by my questions. He kept reinforcing I had great odds already. I said, "well since breast cancer is not curable I will continue to search for new or additional ways I can help myself be here to watch my son grow up." He said "who told you breast cancer was not curable?" I said "none of my doctors have EVER used the word curable....only treatable with good outcomes. Many of the studies talk about survival rates for the next 10 years after diagnosis - I never hear of them referring to the rest of your life." He replied with "CURABLE, CURABLE, CURABLE!!!! I will say it as many times as you need to hear it. I believe you are cured...I can't prove it, but I believe it!" I guess he gave me a dose of just what I needed today. I felt better after I left his office.

While I try so hard every day to live like I don't have breast cancer, it's hard to make it completely go away. I don't think it ever will. It has forever changed me in many ways. I hope to continue being optimistic and hopeful for the future. I want to be here to be a grandma one day and to retire and grow old with my husband. Some days it is easier than others. I guess if I was having a rough day, I could not ask for more support than my dear friend Shannon and my medical oncologist giving me a dose of just what I needed.

A "Little" Inspiration

2012-07-12T08:45:00.002-07:00

Sometimes inspiration comes to you from unexpected sources. Since I am a fitness professional and have been for years, I am use to being the one to try to inspire and encourage people to workout hard. The other day I had a startling revelation that I have raised a real "mini me"! My son has taken over the coaching role and has been a source of inspiration and encouragement for ME! It really caught me off guard.

This was our conversation as we were walking into the gym one day last week:

Me: "Oh honey, I am tired today and I don't feel like working out."
My Son: "Mommy, you have to. You should run today."
Me: "I should run today?"
My Son: "Yes, you should run 8 miles"
Me: "8 miles? I don't think I can today"
My Son: "You can do it Mommy, you have done it before"

What could I say to that???? So I got in there and ran the dang 8 miles. After my workout we were leaving the gym and here was the conversation:

Me: "Well, I ran the 8 miles"
My son" "Good Mommy, I am proud of you. Next time you can run 10 miles"

OMG! I was trying to contain myself. He is going to kill me! Now I know what it feels like to have someone coach me!

I guess it made me realize why I have done EVERYTHING I have done with my breast cancer treatment in the past year and a half. I did it all for him. I am so happy to be here and feeling good. I cherish the time I spend with my son and am inspired by him every day. I still dread the day that I have to explain my breast cancer to him (he still doesn't know I had it or did chemo), but I will remind him that if I can run 8 miles then I am fine. Sometimes inspiration really does come from unexpected sources. Oh and if you are wondering, I have not attempted the 10 miles yet. I will though, but I will be afraid to tell my son because then he will want me to run 12 miles. I have been thinking about doing a half marathon and at this rate, my son will have me ready soon!!

Getting Back To My Life

2012-07-05T20:09:00.000-07:00

It has been so long since my last post. Looking back I have not posted since my son got out of school for the summer! I am a full time Mommy these days which leaves little time for blogging. I did not fall of the face of the earth and I am still doing great - just much busier these days with sports, swim lessons, play dates and afternoons at the pool. I guess that's all good compared to where I was a year ago!

When I think about a year ago, I was in the midst of dealing with the aftermath of chemo and my hair was still shedding and stressing me out. We were also just starting the process of moving out of state. Life was really crazy then and it feels SO MUCH better this summer.

I finally feel like life is "normal". I never thought I would say that. It's strange but I am not consumed with breast cancer 24 hours a day and 7 days a week like I use to be. I still think about it, but it's far less often than it use to be. I have been busy getting back to my life and learning how to live as a breast cancer survivor. I have finally come to a place where I am not ashamed of what I have been through. I feel more open about it and have actually talked more openly about it even with new friends I have met since moving here. This is another surprise for me. I never thought I would say that either.

Some things in my life are still different, but it's not necessarily bad. I am really enjoying doing yoga every week. I like how I feel so calm after I do a class. I am more focused on running. I am up to running 8 miles at a time. I have never done that before now! A half marathon is still in my mind so I may try to do that later this year. I don't miss my crazy career at all. I thought being home would make me bored, but I am busy with taking care of me and my family. I feel like that job never ends. I am also really working on decorating this house! I refuse to live here for 7 years and still have rooms that remain unpainted like the last house. I want to decorate it and enjoy it. I still have not gotten my business off the ground yet, but once my son is back in school I hope to regain my focus on that. All of these things are positives in my life. All of these things are happening because of my breast cancer. I guess I am trying to realize that every event in life causes other things to happen. Sometimes bad things lead to good things. For that, I am grateful. I have a saying I always say "sometimes you have to go through the really shitty stuff to get to the really GOOD stuff". I hope the "shitty" stuff is all done because things are pretty good now.

I Got A Tattoo But Not How I Thought It Would Be

2012-05-10T19:52:00.001-07:00

Earlier this week I finally completed my breast reconstruction and got areola and nipple tattoos. It was kind of odd to go to my plastic surgeon's office and have a tattoo artist tattoo my breasts! I always imagined that if I got a tattoo, it would be on a crazy girl's vacation with my best friend and there would be a lot of alcohol involved. I thought it would be of a butterfly or something cute on my stomach or hip. Never in a million years did I think I would be getting areola and nipple tattoos on my new fake breasts.

I always thought getting a tattoo would hurt really bad, but it didn't. The procedure took about 1 1/2 hours and I did not feel most of it. I guess I didn't feel it because I have a lot of numbness on my breasts after all the surgeries. All went smoothly and I drove myself home. I felt a little tender the rest of the day but only if I bumped my tattoo area. The next morning nothing hurt or was red at all. A few days later, they look great.

I never thought I would see the day that I would finally be finished with reconstructive surgery. It seemed like such an impossible thing at the beginning of all of this. Now I can say "I am done!" That really feels good to say after so much time! What's even nicer is looking in the mirror when I get out of the shower and actually looking pretty normal. I can't believe what miracle workers the breast surgeons are. My breasts look pretty real. Of course I have some scars, but once those continue to fade, they won't be very noticeable. I can't believe how just a little tattoo can make me feel so complete!

Enjoying the Little Things

2012-04-18T20:40:00.000-07:00

Sometimes it is the very simple things in life that make you think. Today I was weeding the garden beds and it left me very alone with my thoughts for quite a long time (we have lots of gardens!). I started to realized that prior to going through breast cancer, I never had time to appreciate things. I never had time to weed the gardens. I was too busy working, doing too many things and hurrying around. Things are so different now.

Today as I weeded the gardens, I took time to appreciate the sun shining down on me. I enjoyed the breeze blowing my hair (which I thought would never happen once I found out I would have chemo - thank you cold caps for allowing me to keep my hair!). I listened to the sounds of the neighborhood and the train in the distance. I could hear kids playing in the park and laughing. It was peaceful and calming.

In my pre-breast cancer life, I just didn't have time to stop and enjoy things and appreciate the moment. I never thought a boring chore like weeding gardens would be something I would appreciate, but I guess after breast cancer I have started to enjoy the little things in life a lot more.

When I think about how breast cancer has changed me, I think about how much I took things for granted before. I guess I was so busy trying to get things done I just didn't take time to be thankful. Now I try to be thankful for every day and some of the simple things that get lost in the daily shuffle.

I wish that others around me could learn this from me, but unless they have gone through a life changing experience like cancer, they just don't get it. It's hard for me when they complain about very trivial things when there are much worse things that could be happening to them. I guess I was that way before the breast cancer too. For now I will take in each day and try to enjoy the little things like weeding the garden, feeling the wind blow my hair and feeling the warmth of the sun shining down on me. These are the little things that make me feel calm, at peace and happy. We all need more of that.

Life is Good

2012-03-30T13:07:00.000-07:00

When I think about how life was at this time last year and compare it to life now, I can't believe how different things are! This time last year I had just finished my second chemo infusion. I still had surgeries remaining and was in the thick of breast cancer. Part of it seems like yesterday, but parts of it seem so long ago. Because life seems so much more normal, sometimes it feels like it never happened. I do have the lovely scars to prove that it did though.

When I look at my life now, it is filled with things I didn't imagine. At this time last year, I wanted out of my job horribly. Now I no longer work there and am free to work on my own business and have time to take care of my family. A year ago, I couldn't run at all despite working out all the time. I had not been running in years. Now I run 6 miles at a time a few days a week. After getting diagnosed, I never thought I would do that. I never ran that much even in my 20's and 30's. Now I am 46 and a year out from breast cancer and I am doing that! At this point I am considering training for a half marathon! My body also feels SO much better. I had so many aches and pains from stress, driving in the car all the time for my job and exercising that I felt like an old woman. The hip pain I had for five years from IT-Band issues is completely gone! The heel spur that made it hard for me to walk at times is barely noticed. My stress level is reduced greatly and I just feel so much better. My secrets are yoga, exercise, reducing my stress and just focusing on the things that really matter.

What is strange to me is that I feel THIS good a year later. Life is just good! I guess breast cancer changes so many things in your life, but some of them can be for the better if you stop and think about it. For anyone reading this that is going through the breast cancer journey, try to have faith that life will be good again. I could not see that in the middle of my journey, but now I am living it.

To Tell or Not To Tell?

2012-03-28T17:58:00.000-07:00

Now that we are settled in a new state, we are making friends and getting to know a lot more people, which is really nice. We have been spending a lot of time with our neighbors and another family we met through soccer. It feels like things are getting more "normal" each and every day which is refreshing!

The problem I have is the whole breast cancer thing and my diet. What is hard for me when we go somewhere is worrying about the food and the hormones in it. When we lived in Michigan, my family and friends all knew and often would prepare something special for me or I would just bring something I could eat with me and it was no big deal. Here, no one knows I had breast cancer. As we get more and more invitations out to do things I fear it is going to be harder to keep this to myself. I just won't eat meat full of hormones or certain foods that are not good for hormone positive breast cancer.

It's not that I don't want to tell people, it's just awkward. At what point do you discuss something so personal and devastating with someone you are building a friendship with? It puts me in a very uncomfortable place at times.

The other thing I have to deal with is my son does not really know I had cancer. He knows I had a boo boo in my chest and needed surgeries to make me healthy. He also knows I had some strong medicines that made me tired for a while. Because I kept my hair through chemo, he has no idea I even did it. I acted normal and we did normal things all through my treatment so he never asked any questions so I just went with it. What makes this difficult is that the more people I tell, the more chances of my son finding out that I had cancer from someone else. I plan to tell him, but when the time is right - not now. He is only five.

I had many reasons I did not want to tell my son I had cancer. First of all I didn't think I needed to teach a four year old the words "cancer" and "chemo". Since I had planned to use the Penguin Cold Caps to keep my hair through chemo, he would not really see me look any different. Also, I was staged as Stage 1 breast cancer and the odds of recurrence were less than 10% for me so I am being hopeful that I won't have to deal with breast cancer again or at least for a very long time. Given all of these things, we decided it would be best not to tell him at the time.

Now I struggle with my son not knowing and my friends not knowing that I had breast cancer. I guess at some point I will have to tell some people, but for now I just mention that I have some very unusual dietary restrictions and hope no one asks too many questions. If they were to ask questions I don't even know what I would say.... I also try to invite people over here more for get togethers so I can control the food better. I wonder how long I can keep this up!

What's strange is with breast cancer you try so hard to move on and forget about it but it keeps interfering with what should be "normal" events or things in your life. It is pretty dang annoying! Darn breast cancer.......ugh!

Back to Reality

2012-03-19T19:31:00.000-07:00

One of the things that other people don't get about having breast cancer is there is NO cure. When you get surgery and go through chemo, once you are done, people think you are cured and life is good. Well it certainly is great to be done with treatment and I am trying my best to make life good, but the fact the breast cancer is not curable still haunts me at times.

For the past two weeks, I have been having rib pain. Like most other normal breast cancer gals, my mind immediately thinks "it's baaaack"! Then I have to try to talk myself down off the reccurence ledge so I don't jump. I have to be realistic and have it checked out by my doctors to make sure it is not a recurrence.

What people don't get is that every little pain we get or experience, thrusts us back into the thoughts of having cancer again. It can recur anywhere at anytime. Some people live for years or the rest of their life with no recurrence, but many women have it come back. How do I not get zapped back to the reality of cancer every time something hurts? This is mentally exhausting. What makes it harder for me is I exercise a lot so something always hurts.

So for now, here I sit with thoughts of my reality with some rib pain. I guess I better start calling my doctors tomorrow. And have I mentioned lately that after all of this I am really sick of doctors?

Angry

2012-03-15T18:51:00.000-07:00

I still actively participate in an online support website with chat boards full of breast cancer women. I go there for understanding, compassion, information, laughs and just to chat with other women that "get it". I consider all those women my "sisters". We are all connected in a special way that others can't understand. There is a bond because of our breast cancer diagnosis that links us and unites us all even if we don't share the exact, same breast cancer situation.

Every time I read that another one of my "sisters" has become an angel, a powerful anger rages inside. My heart sinks. I feel sad. I get scared. I can't stop thinking about her and her family, even if I didn't know her well or at all. A part of me is just lost for a while. This kind of news shakes me to the core.

I get so angry at breast cancer. It's a disgusting, sneaky, vile disease that takes wonderful women from those they love. Why can't they find a cure? Why? What is it going to take? If they can put a man on the moon, why can't they cure breast cancer??? Why do they continue to allow carcinogens in health care products, food and water? When will someone really DO SOMETHING about all of this? How many women have to die before someone REALLY makes something happen?

My heart goes out to the many wonderful people that have been effected and lost by breast cancer. I never thought I would have it. It never crossed my mind this would be my life. I am sure many of those women felt the same way. It's so unfair. I am just angry today!

No One Talks About Cancer Anymore

2012-03-04T21:18:00.000-08:00

This past weekend I went back to Michigan to visit my family and some friends. It was exactly 1 year ago this week that I started chemotherapy. (I can't believe it has already been a year!). Despite it being an entire year, breast cancer is still a very big part of my life. I am desperately trying to move on and not be consumed with breast cancer and that is slowly getting better, but I don't think the thoughts and fears will ever go away. It's just not possible.

The part I find interesting is I think everyone else in my life has moved on from my cancer diagnosis and treatment. I look completely normal and act completely normal so I guess everyone just treats me normal. What's hard for me is that no one even mentions anything about any of it. It's like my breast cancer never happened. It is so odd.

It's not like I want to talk about it all the time or anything, but I was with family all weekend and not one person brought up anything about any of it. I guess it leaves me feeling a bit odd because it is still so prevalent in my daily life. I kind of feel like a fraud in some ways because I look normal and healthy and act normal and healthy but the breast cancer and it's fears still live in my head. Yes, they are less prevalent in my mind than this time last year, but the fears and thoughts still lurk in my head often. Am I a fraud? Am I fooling everyone? Do they think about it and just don't say anything, or are they just over it? I really don't know what to think anymore. It kind of feels like a 2000 pound pink elephant in the room to me. I wish it would go away!!!

Feeling Like My Old Self

2012-02-27T11:23:00.000-08:00

Today I was teaching aerobics. I was asked to substitute for a sick instructor and teach two classes back to back. I have not done this in years! Though I have been running and working out a lot, I have not been teaching much as I have not been able to find anyone hiring instructors here since we moved. I have taught fitness classes for over twenty years (gosh, now I feel "old"!) and have always enjoyed it. This is the longest I have gone without teaching a regular class in all those years. I didn't realize how much I missed it until today!

So today I had a Cardio Interval class. When I got there the room was packed with a great group of ladies that were ready to sweat. We got going and I realized how much strength and encouragement the class participants provide to ME during the workout. I feel like I pushed myself harder than I have in a long time due to the group of ladies and the energy they provide during the class. We worked super hard and I sweat like crazy. I thought I was going to not catch my breath after some of the intervals and my poor thighs were screaming at a few points. It was good for me though!

After that I taught a leg and abdominal class for an hour. I have been slowly easing back into a weight training program along with running a lot but this class challenged the heck out of me. I guess I realized how good it felt to be like I was before breast cancer. None of these ladies know I had breast cancer at all. To them I was just an instructor like all the others. I am glad as I don't want anyone to look at me with pity. I want to be a positive influence on them - not drag them down with negative thoughts of my cancer.

I really felt like the old me. I forgot how much I get from teaching classes. I realized how much it inspires me to try harder and to make a difference in other people's lives. It makes me feel so good that I helped someone do something good for themselves that day. I also am so inspired by the wonderful people that come to my class. They make me want to teach better, be stronger and work harder. That is a side of me I have not seen for a while. I hope in time I can find a place that is hiring instructors. I want to continue helping people get fit and feel good about themselves. The gift I get in return is amazing. Thank you wonderful ladies in my class....you made me feel like me again!!!!

A Normal Lunch

2012-02-15T15:26:00.000-08:00

Since we moved to a new state after my breast cancer treatment, it is odd for me that here no one knows I had breast cancer. I feel like a "normal" person, but with a dirty little secret. I am finally getting settled and meeting people. I made a new friend at my son's soccer practice and we really hit it off. We both have boys the same age. We are both into health and exercise. She currently works full time as a sales rep and I was in sales for twelve years. We just really hit it off. So when she asked me if I wanted to meet up for lunch I was excited.

We went to lunch the other day and it was strange, but in a great way. For the first time there was NO cancer talk. She has no idea about my breast cancer. It's not like I can't tell people, but once they know I am sure they will feel sorry for me or something. It's not the kind of thing I NEED to tell people either. It was just nice to go out to lunch and talk about the kids schools, babysitters, healthy snacks for the kids and normal mom talk. I don't remember the last time I felt that "normal". I guess in time I will have many more "normal" moments and the breast cancer crap will be a distant memory. I hope so!

Penguin Cold Caps Success Story

2012-02-08T20:02:00.000-08:00

Since I have used Penguin Cold Caps I have been in contact with many other wonderful women that have used them too. In my communications a fellow cold cap user has agreed to let me share her story and photos on my blog so that people can see that other women have had success with them too. Here is Laura's story in her own words.

When I heard the word chemo, I don’t think I heard another word the oncologist said. I did not want chemo. All I knew about chemo was that it makes you sick and even worse, you lose your hair. The thought of losing my hair was devastating. I would not look like me. I would look like a sick person. I felt I would lose my privacy. My health should be something that is my choice to tell. Once you lose your hair, that choice is gone. I did not want the sad looks and questions. I felt despair.

My daughter sent me a link to a website that she just happened to come across. It turned out to be the Penguin Cold Cap website. Neither of us had heard of cold cap therapy, but we couldn’t wait to find out about it. I immediately got on their website and inquired about cold caps. I was so excited to hear back from Frank (the inventor) that very day. Could I really keep my hair? I couldn’t believe it!

I have completed my chemo treatments and have kept all of my hair. Seeing myself throughout chemo looking like my old self helped me get through it with a positive attitude; look good, feel good! The people I work with told me they couldn’t believe I was going through chemo, I looked so healthy.

I read that 10% of women will not undergo chemo because they don’t want to lose their hair. Most women say losing their hair was the most difficult side effect they faced, far more difficult than they had imagined. I am so happy I found out about the cold caps. When I look at myself and see my hair, I still can’t believe it!

Laura

Here is Laura before chemo

Laura wearing a Penguin Cold Cap on chemo day:

Here is Laura three weeks after her final chemo:

Making Limoncello

2012-02-06T10:19:00.000-08:00

I have been thinking a lot about how I have been coping with breast cancer. I never thought I would get to a place where I was not consumed with breast cancer 24/7. It's not like I don't think about it, but I have gotten to a place where it doesn't take over every thought and moment of my life. That is huge for me! I never thought I would get here!

I guess none of us have control over what is dealt to us. We have to push through it no matter how horrible, scary or overwhelming it is. It's not like the problem or diagnosis is going to go away on it's own, so we have to face the reality of it and continue to move forward whether we want to or not.

At the beginning of my breast cancer journey, I thought I would never be able to do all of this, but I did. I am not stronger than anyone else, I was simply dealt this crap and I had no choice but to deal with it. Those looking in from the outside think that we are some type of "superheroes" and that we possess a different strength than they do. They say things like "I could never do what you did" which drives me nuts! I had no choice! If you were dealt my situation, you would do it too!

So I guess what it comes down to is that when life gives you lemons, you make lemonade. I guess in my case since I am Italian, I choose to make limoncello! I am trying to make the best of each day eventhough breast cancer has become a part of my reality.

Paying It Forward

2012-02-01T10:47:00.000-08:00

I remember when I first was diagnosed with breast cancer, my mind was going to some pretty morbid places. I just could not figure out how I would continue my life the same way after getting this diagnosis. It seemed so completely overwhelming and impossible. I guess really the whole process of treatment and the road ahead of me seemed unimaginable. I was shaken to the core and devastated.

In one of the early days after my diagnosis, I met a woman named Kathy. She reached out to me and was my "angel". She saw me at the cancer center and knew by the look on my face what was going on as she had lived it exactly one year before me. She has become a dear friend over the past year and has inspired me, given me hope and encouragement. She has a wonderful spirit and zest for life. She taught me that life can go on after a breast cancer diagnosis and has renewed my faith.

Let's face it, family and friends are loving and supportive as you go through breast cancer, but no matter how hard they try, they just don't "get it". Having the opportunity to share my feelings about going through breast cancer with someone that "gets it" made all the difference for me.

I knew after I spoke with Kathy a few times, I wanted to "pay it forward". I wanted to find a way to help someone else dealing with this disgusting disease. I didn't know how I would help someone, but I knew I had a strong desire to do it somehow.

I am overjoyed as I have found an opportunity to volunteer as a peer to peer counselor for breast cancer patients and to answer calls on a breast cancer hotline. I had an interview yesterday and was asked to join the team of breast cancer counselors and supporters. I am truly excited about this amazing volunteer opportunity to be someone that "gets it" to someone going through the worst time of their life. I can't wait to start "paying it forward" and making a difference!

Moving On After Treatment

2012-01-30T17:55:00.000-08:00

Today I had a follow up with my new medical oncologist. I have only been to him once since we moved here a few months ago. It was kind of odd changing medical oncologists and plastic surgeons in the middle of my treatment, but since we moved I had no choice. I kind of miss my old doctors in Michigan right about now!

What I am having a hard time with is the lack of follow up that you get after treatment. I feel like they should be "doing something" when I go there. Ugh!!!

The exams are only physical where they look for obvious lumps or swollen lymph nodes. They check blood pressure and breathing. Then they will ask if I am experiencing any issues or strange symptoms. That is pretty much ALL they do.

After a year of tests, blood draws, medications and multiple doctor appointments it is kind of hard for me to wrap my brain around a simple physical exam. They don't even draw blood! I know I have to accept that this is the norm, but it is hard.

At this point I continue to go back to the medical oncologist every three months for the same type of simple exam. While I am grateful that I only had stage 1 breast cancer, it is hard to just "move on" after treatment. I have talked to other early stage breast cancer patients and their exams seem similar. I guess this is one more thing to accept along this breast cancer journey. It is hard to not worry that there is something deep inside me sprouting and spreading through my body. I hate breast cancer!!!

One Year Later

2012-01-27T14:29:00.000-08:00

A year ago today I had a bilateral mastectomy. I can clearly remember that morning. I was a complete wreck. My husband and I dropped off our son at pre-school and I hugged him. I remember being in the hall outside his classroom and the tears began to fall down my cheeks. One of the teachers whom I did not know was just looking at me like I was crazy. It was so hard to say good bye to him that morning. I was petrified of what was to come. My husband put his arm around me and we walked out of the school together and headed to the hospital.

It was an hour drive. I put on my Ipod with my relaxation music. I just closed my eyes and tried to focus on the calmness of the music. That was the longest one hour ride I had ever experienced. It was surreal.

This morning I put on that same selection of music on my Ipod. It was different though. This morning my husband went to work like a normal day. I got my son up and got him ready for school. I dropped him off for school and then I headed for the gym. I ran 4 miles. I then put on my relaxation music to stretch and do some yoga. It was calm. It was peaceful and without stress.

I listened to those calming songs and reflected back to this time last year. It has been such a long year in some ways but in other ways it seems like surgery was yesterday. I don't want to focus on all the bad things I have gone through in last year. I need to look forward towards the rest of my life with a positive spirit. I need to embrace some of the good things that I did experience in life this last year. Life still went on despite what I was going through.

I am grateful for being done with my reconstruction (other than tattoo's). I am so appreciative for the wonderful Bosom Buddies (my six dear friends that I met through breast cancer online) that came into my life and supported me. I am lucky that I have a new closeness with family and friends because of what I have gone through. I am thankful for finding Penguin Cold Caps so I was able to keep my hair through chemo and move on looking "normal". I am fortunate to have the support of my "breast cancer mentor" Kathy that I met over a year ago at the cancer center. She gave me hope and encouragement in my darkest moments right after diagnosis. I am grateful for my husband and son and the new life we are building in a new city. I am happy for the wonderful vacation I spent with dear friends and my sister in August to celebrate my completion of treatment. I am blessed to have a wonderful best friend who has come to take care of me after two surgeries and came for my last chemo. I look at breast cancer being very present in my life in the past year, but I see so many wonderful things that also happened that are part of my life too.

I won't lie, the breast cancer journey is long and hard. It seems impossible at times. In time though, you realize that life is still going on every day and you have to continue to keep that in mind. Not all of this last year was "bad" and related to breast cancer. My son's first day of kindergarten was wonderful despite me having breast cancer this past year. It's little moments like this that I need to cherish and remember from my "pink year".

Studies on Penguin Cold Caps

2012-01-18T08:25:00.000-08:00

When I was deciding on whether I should use Penguin Cold Caps or not to keep my hair through chemotherapy, I reviewed as much information that I could find. I needed to understand things clinically and make sure I was making a good choice. I first started with the Penguin Cold Cap website for studies and general information. http://www.msc-worldwide.com/scalpmets.html

I also read about the Rapunzel Project which is a great organization that donates freezers to infusion centers so that patients have an easier time using cold caps. http://rapunzelproject.org/News.aspx

I also read various studies. Here are some links to the clinical studies I reviewed online regarding use of scalp cooling and cold caps:

http://www.ncbi.nlm.nih.gov/pubmed/21431870

http://www.ncbi.nlm.nih.gov/pubmed/19241158

http://annonc.oxfordjournals.org/content/16/3/352.full

http://www.ncbi.nlm.nih.gov/pubmed/10762750

http://annonc.oxfordjournals.org/content/17/2/350.1.full

http://articles.sfgate.com/2011-01-26/news/27049661_1_cancer-patients-hair-loss-hair-roots

http://cancerres.aacrjournals.org/cgi/content/abstract/69/24_MeetingAbstracts/5040

Again there are many misconceptions about scalp cooling and cold caps. Most physicians are not educated well about them and don't take the time to even explore the technology. While I realize their main goal is to treat cancer and not hair issues, hair loss is a very real side effect to chemotherapy. A patients overall well being, emotional attitude and physical well being should all be considered. I do believe that if you feel better about yourself while you are going through the worst experience of your life it directly effects your attitude and how you feel physically. I hope as time goes on more medical oncologists will realize this and have more compassion for cancer patients that lose their hair. Based on how clinicians act now, we have a long road ahead to change the way they think.

My Hair Eight Months Post Chemotherapy

2012-01-17T11:36:00.000-08:00

I know I have not posted a hair photo in a while so here you go. As I mentioned in my blog a while ago, I finally broke down and got my long hair cut back in November. It looked good except for because it was so long the ends looked very thin and very dry from the chemo. I went to an all organic hair salon and consulted with a hair stylist there and asked her for help in doing something with my hair. She was so kind and patient and gave me her best advice and best haircut. I trusted her and she did me right! Here is what my hair looked like when I got it cut back in November:

You can see the bangs there which is the regrowth from the hair I lost at my hairline. My hair stylist cut a few more bangs to blend them in.

Here is what my hair looks like now:

I have been using Naturtint Hair Color (available at Whole Foods or online at Amazon) which has less chemicals in it. The color I am using is Light Chestnut Brown. I have used it now a few times and it covers well and has not been harsh on my hair. After completing chemo, I did not use permanent hair colors. I started out using a wash out type hair color. I used Clairol's Beautiful Collection. I purchased it at Sally's Beauty Supply. It was OK but did not cover well but it had no ammonia or peroxide and my hair was so fragile I made it work. I was glad to have some color at that point as my roots were a few inches long from how much my hair grew during chemo. The color does wash out after 6-8 washes and it will stain towels (so use old towels). It worked for me at that time but I am much happier now that I am using the Naturtint which is permanent.

Tips For Using Penguin Cold Caps

2012-01-17T11:25:00.000-08:00

As I mentioned I wanted to share more about my experience using Penguin Cold Caps to keep my hair through chemotherapy. I in no way work for the company or anything, I am just a patient that used them and had success. I want to help other women that may be considering using the cold caps to keep their hair through chemo. Here are a few tips.

Supplies For Chemo Days:

Extra thick moleskin (I used this on my forehead and at my temples while wearing the caps to keep the cold off my skin). I pre-cut the right sizes I would need the night before and just put them in a baggy. That way they were ready to go when I got to the infusion center.
Panty liners - (yes, I said panty liners!) I cut these to the shape of my ears and stuck them on my ears while wearing the caps so my ears would not freeze.
Hair pick - I made sure to lightly comb through my hair and change my hair part every time a changed my cold caps. This prevented me from getting any frostbite along my part line.
Hair rubber band - I had long hair and I loosely put the rubber band in to keep the hair out of the way so it would not get stuck in the velcro on the caps.
Ativan (I asked my medical oncologist for a prescription) - this helped keep me calm and helped me tolerate the cold while wearing the caps
Extra Strength Tylenol - I was afraid I would get a headache from the cold so I took some before my first cap (I did not get any headaches)
Electric Blanket - I purchased a twin size one from Amazon. I wrapped it around me all day and it kept me warm!
Socks, knit gloves and sandwich baggies - I decided to ice my fingers and toes during taxotere to avoid neuropathy. I filled the baggies with ice (four) and put two on the floor. I put my foot on them and then folded half of the baggy up over my toes to keep my nails and toes cold. For hands, I put on my knit cloves and grabbed a baggy full of ice in each hand. I pushed my fingers down into the ice and then had my husband pull a sock over my hands/forearms. This way I did not have to hold the bags the whole time. They would stay in place from the socks.
Scissors (in case I needed to cut more supplies)

Supplies To Have At Home:

Hair pick or wide tooth comb - no use of hairbrushes while going through this.
Organic Shampoo/Conditioner - I wanted to avoid parabens, sulfates and as many chemicals as possible. I used Burt's Bees and Organix brand products through chemo.
Colormark - I used this to cover my roots. It is applied like a mascara and washes out when you wash your hair. I bought it at Ulta. It is not the best but it does help cover roots. At the beginning it worked fine but as the roots got super long it was harder to cover them!
Soft Covered Elastic Hair Rubber bands - the Penguin Cold Cap website does not recommend using hair rubber bands but I did. I exercised daily and had long hair. I was very gentle with my hair when I used them and made sure not to put them in tight or pull on my hair when removing them.
Thin, soft elastic headbands - I used these to just keep the hair out of my eyes. I got them at Walmart in a six pack cheap.
Deodorant - PCCs recommends you use organic, chemical free and aluminum free deodorant while using cold caps. I used Bumble and Bee (I ordered this online) and also Nature's Gate deodorant (I got this at Meijer's).
Organic or Chemical Free/Aluminum Free Mascara - I figured if PCC's tells you to avoid chemicals in the hair under your arms, why not for your lashes? I used Physician's Formula Organicwear Mascara for a while. It was OK bur ran horribly if you got it wet. It was easy to get off though without using much soap or any tugging on the lashes. Later I switched to Tarte mascara (from Ulta) which is not organic but avoids aluminum and most other bad chemicals. I managed to keep my lashes through chemo but they fell out about 7 weeks after finishing chemo.
Latisse (I had my medical oncologist give me a prescription). My lashes stayed through chemo but fell out later. I started using it regularly after finishing chemo. My lashes grew back so fast and were super thick and long. It is expensive and not covered by insurance but I believe there are generic and over the counter options available too. I also used it on my eyebrows which thinned but never fell out (yea!).
Organic and Chemical Free Hair Styling Products - PCC's probably does not recommend use of these items but for special occasions when I needed to look better I did try some Giovanni and Organix hair styling products to get the frizz under control. I did also use Aveda's Be Curly to wear my hair wavy/curly on humid day.
Cute, Lightweight Hat - I know PCC's does not recommend use of hats during chemo but I did use hats on the really bad hair days. I experienced no ill effects from it and it made me feel better about how I looked.
Thick Cotton Headbands - again PCC's probably does not recommend the use of them, but I did wear them to help cover roots as my hair started growing out towards the end of chemo (my roots were at least 1 1/2 inches long as my hair continued to grow at a normal pace through chemo!).
Satin Pillow Case - I did use this since I had long hair to help prevent pulling on my hair while I was sleeping.
Hair Extensions - I had some clip in real human hair extensions I got at a local beauty supply store. I know PCC's probably does not recommend the use of these, but I did use them towards the end of chemo and after chemo when my long hair looked thinner at the ends.
Handheld Shower Sprayer - I got one that attached to the tub faucet and that had a sprayer on it. I found it helpful to wash my hair since it was so long. It allowed me to get the cold water right at the roots of my hair easier than using a cup and pouring water over my head. I washed my hair leaned over the tub once a week with cold water as recommended.

Hear is what I looked like with moleskin and panty liners on before putting my first cold cap on: (this is definately not me in one of my finer moments in life...)

Once I got my moleskin and panty liners on, I took that ponytail out and put a very loose, low ponytail in to keep my hair out of the velcro on the caps.

Here I am with my first Penguin Cold Cap on: