"We Tell The Truth. We Do Not Flinch"

My husband and I have begun watching episodes of "Bones" on Netflix in the evening, before we go to bed.  This is great for curbing late night snacking, as after watching most of these episodes, my appetite has totally been destroyed.  If you've seen this show, you know exactly what I mean.  The episode we watched last night ("The Girl in the Fridge"), was not as intriguing as most we have watched, but nonetheless the topic of not being sold out and diligently portraying the truth stuck out vividly.  Temperance, one of the main characters, was testifying in a murder trial.  She used some powerful lines when speaking with one of her colleagues about a very dangerous situation they had been in and how that situation should be dealt with.  The lines were, "We tell the truth.  We do not flinch.".

It's hard to be real and truthful when life brings you to places that previously only existed in your worst night mirrors.  We have been taught, be it through people squirming when we occasionally burst out in honesty, or by watching role models put on a good face when we know things aren't good, to cover up the truth if it may make someone uncomfortable.  Telling the truth may sound easier, but when push comes to shove, we tend to "flinch".  I've discovered some heroes in my breast cancer journey who tell the truth, and certainly do not flinch.

These heroes are the models portrayed in The SCAR Project:  Breast Cancer Is Not A Pink Ribbon, produced by photographer David Jay.  When I say models, I'm sure your mind goes straight to scantily clad barbie-like women, starring seductively at the camera.  While these models are scantily clad and starring at the camera, the reasons they are presented this way is to inform.  Their bodies, though scantily clad, are heavily covered in the scars that are left behind after breast cancer treatment.  Their stares tell a story of pain, fear and determination.  These are young women who have been treated for breast cancer and are brave enough to tell their story with absolutely no words.  And what a story they tell.  I must warn you though.  These stories are not for everyone.  Certainly not children, and certainly not people who want to keep believing that breast cancer is pretty, pink, and oh so curable.

My "favorite" picture in the project is one of a young woman with very short hair, tears streaming down her face, mastectomy scars splayed across her irradiated reconstructed chest.  You can see the world of breast cancer in her eyes and spread across her body.  But, for me, what stands out above all the pain and turmoil is the essence of true beauty.  This isn't the beauty of her hair, eyes or reconstructed chest, but a beauty which radiates from within... the beauty of survival.  She IS beautiful and cancer didn't take that away.  I think she should be the "new" pink ribbon, as she is all aspects of breast cancer rolled into one honest "beautiful" picture.

Breast cancer is not a ribbon, all pretty and pink.  Breast cancer is surgery, chemotherapy, radiation, medication, pain and fear.  Survival is letting that beauty, that inner strength and determination shine through, despite wearing reminders of the horrible disease on your body and the mental reality that one day this horrible disease may rear its ugly head again. 

"We tell the truth.  We do not flinch."

Cancer Sucks

My oldest daughter brought a bracelet home from school the other day that said "Cancer Sucks". Her friend who lost her dad this past summer to cancer gave it to her. She asked me what I thought of the bracelet, since she knows I'm not found of the word "suck". "Suck" is just so negative and non descript, I usually feel there is a better word to describe a situation. I thought about it and said I really didn't think cancer deserved a better word and frankly it does just suck.

Last time I posted, I was getting ready to finish up my last reconstructive surgery. That went very well. Compared to all my other surgeries it was a breeze. The most painful part was having my port taken out, probably because I still have nerves there to feel pain. Since I'd had two other surgeries on my breasts, I'm pretty sure most of my nerves have been severed and no longer work since I had near zero pain in that area after surgery. I still had to be careful about lifting for a few weeks, but by October I was feeling well enough to help roof our house.

I'm happy with my reconstruction results, but by no means are they perfect. Due to the fact I had a more aggressive mastectomy on one side then the other, I am not symmetrical. I can go back and have revision surgeries done, if I would like, but right now that doesn't even remotely interest me. The reality is I had cancer, and had to undergo radical surgery to get rid of that cancer. I am impressed the plastic surgeon could repair me as well as he did, so I am content. I didn't expect perfection, just improvement from post mastectomy surgery, and that has been accomplished.

A few days ago, I had my very first bone scan. I've been having hip pain since October that had progressively gotten worse and my local doctor and oncologist wanted to make sure cancer had not spread to my bones. Thankfully, my scan came back as normal. I'm glad they got my results back relatively quickly, because I don't do well with "scaniety" I've decided. In the four days from the time I'd had my scan, to the time I got the results, I'd went from convincing myself the cancer had to be in my bones all the way back to there was nothing to worry about and back again about ten times.

I think the pain I've been having is just a side effect from the chemotherapy I've had and the medication I am currently taking (Tamoxifen). It's not horrible pain... just noticeable nearly all the time. Before I called my oncologist and told him about my hip pain, I'd figured that was what the pain was from, but I wanted a doctor to make the decision I shouldn't worry, not me. I didn't want to do the same thing I'd done two years ago by explaining away and minimizing a symptom only to find out many months down the road that I should have been to a doctor much sooner. So this time I decided to let the doctor do his job and I'd do my job by going to visit the doctor. The doctor took me seriously, and I'm so thankful he did, as now I have peace of mind and don't have to keep wondering.

I'm going to have to get used to being willing to let doctors know when I have pain that won't go away. I'm not a complainer, and can usually learn to cope and adapt to discomfort. But unfortunately, the reality of breast cancer is a person is not considered "cured" until they die, have an autopsy and no breast cancer is found in their body. The nature of breast cancer is such that it can crop up 10 or 20 years after an initial diagnosis, so I have to be very in tune to my body and any changes that may indicate a problem. Breast cancer isn't like a lot of the other cancers where a person is considered "cured" after 5 years of remission... it's just to sneaky.

Summer Update

Since my last update, there has been little news, however there are a couple things I would like to note.

Firstly, shortly after completing my herceptin treatments in April, my oncologist sent me for another MUGA scan to check my heart function after herceptin was completed. Now just for reference, I'd like to mention my first MUGA (prechemo) came back at 60%, which is perfectly normal. My second MUGA came back at 54%, I believe, so we could see the rounds of chemotherapy had taken a small toll on my heart function. Ever since that point, my MUGA results have only increased, and my final MUGA reading came back in May at 76%!!! I have no idea what the explanation is for the increase of my heart function while taking a drug which is notorious for damaging the heart, but I'm sure God has an explanation. Our prayer through my treatment was that I could complete herceptin, as we felt completing this drug was key to the most positive outcome possible. I feel God heard our prayers and the prayers of many others and not only protected my heart, but somehow allowed it to strengthen!

Secondly, all the surgeons and nurses are finally going to be able to put me back together again! Come mid-August, we once again travel down to Mayo to complete the reconstructive surgery process, almost exactly a year from the start of reconstruction. This surgery should be a much simpler and less painful surgery then my last and should be done as outpatient. I have also been given the OK from my oncologist to remove my chemotherapy port, so I will have that done at the same time as my reconstructive surgery.

I will never regret choosing a double mastectomy. Nobody knew until after surgery how widespread the cancer was in my breasts. My old breasts were housing a disease which tried to kill me, so honestly, I'm thankful they are gone. Emotionally, yes, I wish I could be 100% me, and have never got cancer and had to change my body. But after living completely flat chested for over 6 months after my mastectomies, I know that not having reconstruction was not an option for me either. The mastectomy bras and prostheses were uncomfortable and not very pretty. Going flat chested made shirts fit horribly, so for me, reconstruction was the best solution. So, yes, my breasts are now fake, but frankly, that is an upgrade from the breasts which housed the disease that was trying to kill me!

Can I get a drum roll please?

Da-Da-Da-Da-Da DONE! Tomorrow, my absolute very last chemotherapy treatment is scheduled! I am so excited to check that off the "TO DO" list! I've decided oncologists have this drug treatment schedule set up the way it is for a reason... they hit you with their uppercut that knocks you on your back first, so they can say "It will get better.". Then they order the drugs in such a way that you are actually thankful to get the gut punch after the uppercut, and then the slap in the face feels mighty fine after the gut punch. If they slapped you in the face first, and then said "Just wait 'til next time, it only gets worse", it would be very hard as a patient to comply with treatment. So the last few months, I've been getting slapped, but it sure beats the uppercuts we started out with! So tomorrow is my last slap! Ha Ha!

As hard as chemo was to do, in all seriousness, I could not be more thankful for all the drugs they have to treat breast cancer now! I had the discussion with my Oncologist a couple of days ago as to how much better the prognosis is for my type of cancer then it was 10 years ago, thanks to the advancements that have been made in the drugs to treat the cancer. At that time, my type of cancer had a very high rate of recurrence, where as today, my Oncologist says they hardly ever see recurrences after the drug regime I've been on. Just imagine how much better things will be in another 10 years? Amazing!

As of this week, I now only have to visit my Oncologist once every three months, until I hit five years out, and then I will switch to once every six months, until ten years out... and then I can say goodbye to Oncology forever! Again, thankful for what they did, but won't be sad to check that off the list when the time comes.

So right now my doctoring schedule is getting my port flushed every six weeks until I have it removed (probably another six months or so), Oncology visit every three months and I have my last reconstructive surgery to schedule down at Mayo clinic some time this summer.

I've been thinking the last few days more about all the people/situations I have to be thankful for in my life. You know the song "Count Your Blessings"?

"Count your blessings, name them one by one. Count your blessings, see what God hath done!"

Seriously... I need to go back to school, 'cause I can't count that high! I am so very thankful for so much!

Update Time

Well, I figured it was probably about time for an update, so here it is...

Medically, things are clipping right along. I'm still doing herceptin once every three weeks. I've had an array of side effect (headaches, rashes, full body aches, chills, sore throat, and tiredness) but nothing that slows me down too much. I do occasionally get frustrated and wonder when/if I will ever feel "good" again, but I know that this too will pass. I will be done with my infusions (herceptin) in early April. I just had another MUGA heart scan this month, and everything came back excellent! It was actually the best reading I've had yet, so herceptin doesn't appear to be messing with my heart.

As far as reconstruction, I am down to only needing one more expansion (next week!) and then I call my plastic surgeon down at Mayo for instructions as to what happens next. My understanding is that there will be a few months waiting period (to allow tissue to fully expand and stabilize) and then I will have the implant surgery.

I visit with a nurse practitioner from oncology once a month. She checks my blood work, my incisions, chest wall, axilla, heart and lungs. So far, everything has been excellent!

Spiritually, I have come to the conclusion that the simpler I can make my faith and let God take care of the big stuff, the more freedom I feel. After ending chemotherapy (the bad nasty stuff), I went through a rough time where I dreaded cancer returning. My odds of getting cancer two years ago was ~ .2%, but I managed to get cancer. Now, as a survivor, my odds of having a recurrence are anywhere in the range of 7-20%. Not very comforting, at all. I was trying to have faith in these odds, in the medical field, in my doctors, but I still felt defeated and incredibly discouraged and felt like I was just waiting for my world to be rocked apart again. Then God showed me I was putting my faith in the wrong place. He assured me that no matter what happens in the future, He is big enough, He loves me, and He is good all the time. And no matter what happens, if I keep my faith in Him, my world will not be rocked apart. I could be diagnosed with a recurrence tomorrow and He is still big enough, He still loves me, and He is still good ALL the time.

Emotionally, I've been trying to process why our society (myself included) is so adverse to feeling any discomfort. We try so hard to avoid tough situations or mask our pain. Isn't it through feeling discomfort that we learn some of the best lessons? Isn't tough situations where most of our growth and maturation occurs? It has been a rough year emotionally, physically and spiritually, but I'm trying to learn to embrace the good times with the bad, and realize that both are a part of life and make up our stories. Life is really worth living and feeling... all of it!

Breast Cancer Does Effect Women of ALL Ages

Us younger women are lulled into what I would say is a false sense of security when it comes to breast cancer. (Mistake #1) If we don't even have to consider getting a mammogram until we are 40 years old, the odds of getting breast cancer must be extremely small when you are younger then 40. And yes, that is true, the odd are very small, but you still have the possibility. And if you are like me, your odds of getting breast cancer are 100%, and really those are the odds that truly matter... your own personal odds.

One of our main tools for detecting the early stages of breast cancer as young women is the monthly self breast exams, but in all seriousness, how many of us actually do it monthly? I never did. (Mistake #2) I was the check in the shower if I had a spare minute every once in a great while kind of girl. Thankfully, I believe I did find my lump right away because I happened to find a spare minute in the shower when my youngest baby was about 4 months old. But then I made another mistake. (Mistake #3) Instead of running straight to the doctor, I decided that there was no way I could have breast cancer because I was too young, the Internet said my symptoms were not like breast cancer, and frankly, I was way too busy to deal with cancer. I should have just drawn a large, bright red "D" (in the most fashionable shade of lipstick, of course) on my forehead to stand for "Dumb" or "Denial" or both. But beating oneself up does no good, so I will stop.

What I'm not going to stop is trying to get the word out to other young women that A) younger women can and do get breast cancer. And when a younger woman gets breast cancer the odds are that cancer is more aggressive and nasty and is going to try harder to kill us then our counterparts breast cancer. As far as I know, doctors don't really know for sure why this is but younger women's breast cancer is nastier. Which leads me to B) DO YOUR MONTHLY SELF BREAST EXAM. And do it religiously. If you don't know how to do a breast exam, ask your doctor. They should show you how and/or give you literature to explain it to you. This is your most powerful tool in detecting cancer early, so use it ladies! And C) if you find a lump, don't run to the computer and research it on WebMD or Mayo Clinic's website, or any other site. My symptoms all pointed to the facts (obtained via online research) that I didn't have breast cancer, but I did! Instead, spend your time much more wisely, and make an appointment with your doctor who has the knowledge to help you figure out if you should or shouldn't worry about your breast lump. Learn from all my mistakes!

I also want to impress on you younger ladies that there are some doctors out there that may blow you off because you are so young. From my understanding, the only real way to confirm whether a lump is cancerous or not is a biopsy. Mammograms and Ultrasounds can tell doctors if there is reason to do a biopsy. But I have yet to hear of or meet a doctor who can tell just by feeling a lump in the breast if it is cancerous or not. So insist on further testing until you are satisfied that cancer has been diagnostically ruled out. You may have to push your doctor a little or a lot, or even go see a different doctor (or ask for a referral to a breast center) until you feel the doctor is concerned enough to prove to you thru medical testing that you shouldn't be concerned.

October Update

Things are going relatively smoothly here, which is good. We seem to be adjusted to fall routines and all that entails. The kids are closing in on the end of their first quarter at school and we all have enjoyed our beautiful fall weather here.

On the medical front, not much has changed, which is also good. I go for herceptin treatment every three weeks, see my oncologist's nurse practitioner once a month and have my tissue expanders expanded every so often. So I am averaging about four doctors appointments a month, which is doable. Family and friends continue to selflessly step up and so willingly take care of the two little ones while I have doctor appointments and that is so appreciated! I know that taking care of an almost 2 year old who throws a good fit every time I leave her somewhere and is hitting that age where tantrums come at the drop of a hat, and a very energetic 3 year old boy is not easy. But I am thankful that my kids get time away from me to socialize with other children and other adults. It is a little sad that anytime we take the two little ones somewhere they assume that "Mommy has to go see the doctor." and they are perplexed when another member of the family has a doctor appointment, because in the reference of their memory, I am the only one that has doctor appointments.

A little more tangible medical news I have received lately is my last Muga scan (done in early October) came back with excellent results. My heart function is remaining stable while I'm on a drug (herceptin) which can be very damaging to the heart. I have also deduced that herceptin apparently takes a toll on my skin, as well. The last few weeks I have been dealing with a very interesting skin rash that appears to be related to my herceptin treatments. Within a few hours after treatment, my body looks like I've got a case of the chicken pox. The rash doesn't itch or bother me in any way, it just looks really nasty and takes anywhere from a few days to a couple of weeks to resolve itself. The nurse practitioner's advice is to monitor this rash situation and since the rash itself does not cause any bothersome effects, continue on my herceptin schedule as planned, which makes total sense to me.

I have also been experiencing some vision issues since chemotherapy has stopped. My vision is more blurry, so the nurse practitioner advised I get my eyes checked, as the chemotherapy drugs and steroids I was on have been know to effect vision. Sure enough, I got my eyes checked, and I need glasses. I wasn't specifically told this change is due to my treatments but I was told that it is very possible treatments changed my eyes and there is the possibility that my eyes could get better the further out from treatment I get, but for now I need glasses.

Nobody told me that once you hit your 30s, everything falls apart... If I'd know that I would have had more fun in my 20s ;-). Fake boobs, glasses, very little hair, and a polka dot rash... I told my husband I'd might as well go in and get fit for my dentures next. :-) He accused me of being somewhat dramatic... ha ha. I think he may have been right. :-) Again, a little humor goes a long way.

Thank you all for your thoughts and prayers as the journey continues. I have been blessed, am blessed and will be blessed, and I challenge you to believe the same about your situation.