In memory

Today, on the last day of National Breast Cancer Awareness Month, 

I'd like to take a few moments to remember

Jen

Jenny

Susan

Rachel

Arlene
Eedie

and everyone else who was taken from us too soon

xoxo

Brandie

How Has Cancer Affected Us

Today's post comes from my husband. I saved this for last for a few reasons. Mostly because he just sent it to me at the end of last week. But also, it made me cry. Not just cry, but ugly cry. And, I wanted to be selfish. I wanted to keep this just for me for a few days, to read it, to reread it, to love him extra and to hold his words in my heart. But he wrote this for you as much as he wrote this for me, so I won't be selfish any longer and I'll share it with you. I think, if you don't already know how awesome he is, you might after reading this.

How Has Cancer Affected Us
by Eric

Eric and I in August

Hello everyone in the digital world, it’s the DH here. Most of the time DH is used, it stands for Dear Husband. Occasionally, although my wife would never admit it, DH stands for something less glamorous. Something I always tease my wife about. Today’s blog post as you have guessed by now is from me. My credentials can be summed up pretty quickly. I’m married to Brandie. I have no blog, twitter, or social media account other than Linked-in. If I check my personal e-mail account three times in one week, it’s impressive. It’s not that I’m anti-technology, the real reason are these short 24 hour days we live with. I cannot fit anything else into my routine, and I’m not one to do something half hearted or poorly.

How has cancer affected us? It might almost be easier to talk about ways it didn’t affect us.

Cancer. Just finding a starting point is hard. Cancer is a taker. It takes an individual’s time, well-being, money, and this is a short list of the many things which come to mind. In order to combat cancer one needs to surround themselves with a support group of givers. Since my wife was diagnosed with cancer, people and organizations have given their time, meals, emotional support, and yes; money too. Within our own family we regularly give to each other. This has been important, as a family unit we’ve grown closer during this time of need. Sometimes we asked for help, many times though it was offered without any request on our part. It is truly humbling to receive this help.

Eric coaching softball

I have a typical guy trait in that I do not get very emotional. Outside of funerals, my wife has only seen me tear up a couple of times the 15 years we’ve been together. In retrospect though, we could not have made it through without the support of family, friends, church, and other groups. This thought makes me cry. I look at the growing up which our kids had to do. How many times I was forced to use the “C” word on them as reason for them to put aside being the kids that they were supposed to be and transform into an adult because the house needed to be quiet, they would be left home alone, that they couldn’t play with their friends on a nice day, or join some sport they wanted to do, etc. This thought makes me cry. I look at the love of my life and see her struggling, to this day with many things we healthy people take for granted. Knowing that even when she says everything is ok, it’s really not. This thought makes me cry.

I try not to dwell on this long. A quick thought is enough to appreciate and respect the situation. Because like a tornado that randomly strikes a town, we did not choose to let cancer in our house. This is one of those random life events, which we are fortunate enough to be counted in the survivor column and not as a casualty. So long as we are in that survivor column, there is some good to be had.

Out of this mess, we cherish things more than we did in the past. My wife takes lots of pictures. Another item I tease her on regularly. I’m glad she takes these pictures. It gives us a lot of happy moments to look back on, even if I’m not sure what we will ever do with all of them. As we go forward, I want to say that the worst is behind us. Should this not be true though, I will be there for Brandie, now and forever, as I know she will be for me. Make sure those you love and care about know this and thank you for being a friend.

Cancer Stinks!!!

she made this on the rainbow loom

Today's guest post is from my 11 year old daughter. She's a pretty awesome kid and has a big heart. She would give you the shirt off her back if she thought you needed it. Her words are simple, sweet and short, but have tugged at my heart in some pretty big ways. But, I'm glad she wrote this. Parts were hard to read, but at the end of the day I love this kid and believe she knows how much she is loved!

Miss M in Aug

Dear readers, 

When I was told my mom had cancer I was really sad. We were crying, sitting on my mom's bed when she told us the news. After she told us, we got to eat chocolate. The first thing my brother said when we found out was "can I go play Wii now?" {mom's note: he was 5 at the time}

Cancer was very hard on my family but other family and friends helped us. People brought us meals and helped babysit my brother, sister, and me. With a lot of help we got through it but there were a lot of hard times and lots of very sad moments. 

But in the end (even though sometimes it felt like there wouldn't be an end, there was one). It all started to get back to normal then back to bad over and over. My mom even had a surgery the day before Christmas Eve! But not a major one, a small one, and she was back home even better then before and on the same day! 

But I remember when every day she was sleeping in bed. My sister and I would try to help out around the house as much as possible and try to do all our school work without help. Even though it was only a few weeks, sometimes it felt like forever. 

But in the end, it all worked out. I'm really glad I still have my mom. I mean cancer stinks!!! But I'm glad we had help. 

Sometimes when my mom has doctor appointments that are important tests and other stuff like that, sometimes I worry the cancer might come back. I get scared a lot about things like that. But knowing that we have family and friends makes me feel a lot better.

Love,

Miss M

My Journey

Today's story is from Mary Lou. Mary Lou is another one of my relatives. She is my mother's cousin, which I think makes her and I second cousins. Mary Lou is a breast cancer survivor, but you will see she used her breast cancer story to do some pretty amazing things! 

My Journey 
by Mary Lou

First of all I would like to say that I had always had my Mammograms, my Paps..everything by the book. I was 40 years old at the time I first encountered my problem that would lead to many more.

My journey with Breast Cancer started like any other day, it was a beautiful day in October of 1986. I had a hectic work schedule and worked hard outside that weekend raking   leaves and preparing my flower for the long Illinois winter that lay ahead.  At the end of the day I felt like so much had been accomplished and I drag myself upstairs for my shower and settle in for the evening. But the shock I received when I undressed for that shower is one that I will never forget. When I took my clothing off to shower I found blood in my bra...I was so frightened and confused and here it was a weekend and I had to wait until Monday morning to call my family Doctor. 

I thought Monday would never come, I called as soon as my Doctor came in, he took my call and directed me to a surgeon, he knew that was where I would need to go, he got me in that same day.  The Surgeon reviewed all of my past records, and scheduled me for surgery right away. He found that the bleeding was coming from my milk gland, it was not a “full scale Cancer” at the time they did the Lumpectomy, it was Severe Atypical was the description on the Pathology report,   he felt that the Lumpectomy would fix the problem. It was a very deep and difficult surgery; remember that many years ago it was much more evasive. I went home thinking it was over, but it was just beginning.

Exactly one month later I started bleeding again, I was so frightened when it happened again. This time my surgeon sent me to a Chicago hospital and I had more surgery ... taking more of the breast. I did not feel comfortable and was so frightened that they were just following protocol and guessing at what point this would turn, I felt they were thinking Liability Insurance and covering their butts and I was so afraid that they would guess wrong. I came out of surgery the 2^nd time wrapped like a mummy, not knowing what they had even done. Rush is a teaching hospital and everyone that came around would tell me I would have to ask my Doctor, this continued all day. I finally found out that they found the same thing with the milk gland being ate into and described it as a Severe Atypical Cell.  For the next few months I saw the surgeon almost monthly having repeated mammograms and biopsies.  In Sept of 1987 when I had my (almost monthly) mammogram, they kept asking me to come back in for more views and sent me upstairs to my surgeon. He told me I needed a Double Mastectomy and he scheduled it in 10 days. I remember leaving his office feeling numb, that was before cell phones were so widely used, I wondered how I would tell Milton, my Husband and my Children, my Mom, my 6 Sisters, my coworkers, family and friends … my mind was spinning. I thought I wanted to be strong when I told Milt, I didn’t want to cry. I stopped in the lobby of the clinic and called him, I thought I would be stronger on the phone than I would face to face … but I wasn’t strong, the fear came out.  But he assured me that it would not change his Love for me and was so supportive of me and he still is!

I was in management for a large company, I rearranged my work schedule to accommodate the surgery dates and the day before my surgery, I was in my office when I got a call from my Dr, he called to say that he had changed his mind and wanted to do MORE biopsies.  My family Doctor did not trust what the doctor did, he called Mayo Clinic and sent me armed with Mammograms, surgery reports and Biopsy reports. The Pathology Dept called when Milt and I were with the Doctor and said “You need a Double Mastectomy, and I can do it tomorrow”. Milt and I went to lunch while the surgeon scheduled all of my pre surgery testing and admitted me to the hospital ... needless to say, we could not eat but we did need time to digest this news.

I recall the calls to my children and family, trying to stay strong but being scared to death. We were so far from home and Milt was alone during my long surgery and that bothered me, I just wanted it over with so I could open my eyes and see him again. The Plastic Surgeon came in as soon as the Surgeon finished to put the expanders in to start my reconstruction.  I came out of surgery feeling like a “time bomb” had been removed from me. 

Milt got me pillows and made me a comfy bed in the back seat of the car and we returned home. I did wonderful, my Sister lived in the same town and came to stay with me and I know that it was hard on her and it was hard for me when I saw her and her girls that first day. I knew I had to be strong for so many people. I had a very positive attitude and I got through all of my reconstruction surgery with flying colors. But after facing something of that magnitude Milt and I decided that life and quality of life was more important than our careers. We wrote out resignations, scouted the country for our new home.

We ended up moving to Lake Cumberland KY, Somerset was home the day we first set eyes on it, we bought our home in October 1987, one month after my mastectomy. We have never regretted that decision. Immediately after moving here I got involved with the American Cancer Society and that was exactly what I needed to heal, to me it was a huge part of my recovery. I met so many people that became like family to us, I served on the Board of Directors for 10 years, as President for 3 terms. I became a Community Activist for ACS and obtaining Ambulance Service for our Lake Locked Community and Chairman of the Ambulance District for 16 years. 

After 5 years I had problems with my implants and had to have them removed, I was named Hero for Hope for 2012-13 by the ACS for the South Eastern Division, an honor beyond word for me. I am a trained Reach to Recovery Volunteer with the ACS. My goal is to help families going through this as we that have been there can be a source of strength and inspiration to those that have yet to travel down that road.

I have never felt anger for what has happened as I feel I have had the chance to grow and experience things in a different light than if I had not traveled this journey. I also have had the most supportive husband and he is behind me in all I do, encouraging me all the way.  I also feel my faith in God is so much stronger. I hope to be able to reach many more ladies in years to come and each day is a gift.

Family

Today's post comes from my cousin Amanda. I will warn you, when I first read her post I bawled like a baby. Truly. While I can guess what it felt like to be someone watching me go through this, I don't actually know. And this post was my first glimpse of what the other side of my cancer diagnosis felt like.

Amanda is the mom to two adorable boys and is not only working, but going through nursing school. If anyone can do it, it's her! Thanks Amanda for sharing with us and for letting me see through your eyes.

Amanda and I at her wedding

I remember it like yesterday; I was at my parent’s home when my mother and father told me a loved one had cancer, breast cancer. I waited until I got to my car to lose it and ball my eyes out. I couldn’t believe it. I loved her, looked up to her, admired her, and wanted to be just like her in so many ways. Growing up, she was perfect in my book-pretty, smart, and funny. I watched her and her friends practice their cheers for cheerleading in her basement and I wanted to do it too because she was so cool and I wanted to be cool like her too. Then as we grew older, she had the most wonderful family and three of the most beautiful children. I wanted a life like that too. She is a great Mom and wife. How could she have cancer?

I couldn’t bring myself to call her because it broke my heart and the thought of losing her was too much to bear. It finally got to the point where if I didn’t call, she might think I didn’t care. I dialed her number and prayed she wouldn’t answer so I could just say my planned out thought without a breakdown to her voicemail. But there it was her voice, ‘hello!’ It was over for me before I could get started-I cried, broke down on the phone. Over the next half hour, hour, I cried, asked questions, cried, tried to listen to her talk and explain, and then cried some more. I could barely get two words out without losing it, because I hated that this was happening to her and I would have done anything to take it away. When we hung up, I felt terrible. I should have been strong and comforted her but instead she was the one being strong and comforting me.

Over the next few days I couldn’t shake the feeling of loss I was already feeling. I had death and cancer so intertwined, as if one could be substituted for the other. I broke down several times, it hurt so bad to even think about her. I thought the same thing was going to happen to her that had happened to another loved one in my family who had cancer. I thought for sure she would pass away and I started preparing my heart for the loss I would eventually have to face.

Amanda and my now 11yo

I read every update, status post, and blog entry; just waiting for new news of her condition. I prayed continually for healing and for every hurt to be relieved. I felt like I was hurting right alongside of her when she went through her surgeries and recoveries. I cried each time a new medicine had unwanted side effects and she ended up back in the hospital. My heart ached when she would get sick and her updates were simply she was having a rough day. I know it was far worse for her, but I know it affected so many friends and family to watch her go through all this pain. Seeing her in person was even more difficult, she was so thin, frail, and pale. Her hair was gone and it reminded me of the loved one that had lost their battle with cancer, I was afraid the same would happen to her soon.

Thankfully, that is not what happened to her. She was able to have surgeries, medicine, and therapies and as of right now is living, ‘cancer free.’ I make this sound much easier than it was for her, it was a long process and the fight continues every day. But she is ALIVE and that is something to be very happy about!

Check Your Tatas

  Today's post comes from Anne. I met Anne on twitter. Anne was diagnosed with breast cancer when she was 28 years old. Today Anne is sharing with us the importance of knowing your body! Anne's blog is Fight Like a Girl and you can follow her on twitter here.

Check Your Tatas! 
by Anne 
 

Let's just get this out there -- self breast exams are not fun; they're kinda creepy and uncomfortable. Who does those anyways? Why would I need to do that? I'm so young!

I'll be the first to admit: I never did these. Ever. I ignorantly thought that because there is no cancer history in my family and I'm under 40 {heck, still under 30!} that I was immune to this.

How did I discover my lump? I accidentally found it myself in the shower. By the grace of God. I brought it up to my OB and had him check it. Because I was actively trying to get pregnant, he decided to follow up on it and have it ultrasounded. He also sympathetically said "Anne, I'm sure it's nothing. Probably just a cyst". The radiologist's report came back "Solid mass, suspicious, follow up with biopsy".

So away to the breast specialist I went. He also told me "This doesn't look like cancer to me, if I thought it was, I'd tell you. But it has an odd shape, let's biopsy it just to be sure". Well I'm here to tell you that after 2 different doctors told me I'd be fine, and it was nothing -- it WAS something: a 7x9mm cancerous tumor.

Women need to be their own best advocate when it comes to their health. If you think something is weird and aren't sure about it, follow up! Have it checked out. Don't let anyone tell you that you're too young. It's better to be safe than sorry. If I would've let those doctors brush me off, I would've been in a much worse place than I am now. You women CAN and DO get breast cancer. But because my cancer was caught early - stage 1 - I have a 98% chance of survival and a long life.
 

Here are a few excellent resources about self breast exams:

• BreastCancer.org
• SusanGKomen
• Be Bright Pink

This is such a "taboo" topic to discuss but the more we know, the more empowered we are!

Cancer

Diane and I last year

Today's guest post is also from an Avon walker. I met Diane last year when I did my first Avon walk. She stayed by my side last year and encouraged me to walk the entire thing - which was extremely important to me. Even when I yelled at her and didn't want to take another step! We walked together again this year, and will walk again next year. Diane has endless amounts of energy and a spring in her step! I'm so glad we are One More Mile teammates! Diane is a physical therapist by day and an avid sewer and wonderful grandmother by night.

Cancer
by Diane

Cancer....something evil or malignant that spreads destructively .  This is  one of the definitions I found when looking in the dictionary and  I tend to agree. This powerful disease has not affected me personally  since my brother passed away in 1974 of Leukemia. Cancer has invaded my friends and their families.  It has been evil and destructive to their lives, changing their course forever. Throughout the years I have become more saddened as Cancer infected those around me.  I have felt devastated and  helpless because I could not fully understand their battles and the feelings that enveloped the victims. Over  the past few years I finally decided that I CAN and will make a difference.

 

Diane, always with a smile on her face!

This past year especially has been one with a variety of mood swings when it comes to cancer in my life.  Two of the most amazing ladies I know are breast cancer survivors.  Sue is a 6 yr survivor and Brandie a mere 34 is a 1 ½ yr survivor.  They have both taught me what courage and faith is about.

Two years ago I found out a friend of mines daughter in law was diagnosed with Breast Cancer at the age of 33.  She began treatments and is doing well.  An amazing young lady who has never lost faith. 

Just recently a friend of mine became an angel in heaven.  She was diagnosed with Breast Cancer  and after treatment for that she was diagnosed with Brain Cancer and passed away recently.  She was a wonderful lady who made everyone smile.

Last fall I lost a very special patient.  She was diagnosed several years ago with stage 4 breast  cancer which then metastasized to the bone.  After fighting for several years she stopped her treatments and put everything in Gods hands.  Margaret lived everyday to its fullest.  She gave life all she could.  This courageous individual taught me that even though obstacles get in our way we must fight these battles to the best of our abilities.  She touched my heart, filled my soul & changed me as a person forever

Almost a year ago very good friend  lost her father to colon cancer after a courageous fight

Diane, me and team Amazeboobs

If Margaret, Polly, Maggie, Brandie, Sue  and  Curtis & hundreds of thousands of others I don't know can fight the battle for their lives who am I not to stand in the trenches & fight with them? I have made fighting cancer my mission, if I can help others become aware of the necessity to become involved fighting the fight then I have completed my mission This will not be an easy task as each day hundreds of individuals are diagnosed with cancer. If I can educate others, your Mom might be around in a few years, your daughter won't be 35 years old fighting for her life & I will know in my heart that I made my angels Polly & Margaret proud.

I have chosen to walk each year in the Avon Walk for Breast Cancer because I feel this is my mission.  I feel so right to walk and raise funds that will help educate others and hopefully one day put an end to this disease.  Though this is a devastating illness and I can only imagine the challenges victims face I know in my heart that I am in it to end it and I pray that one day this will be no more.

Why I Walk

Jen with her daughters

Today's guest post come from Jen. I met Jen on twitter last year, after writing about why I walked in the Avon Walk. Jen also walks (though not in Chicago) and we hit it off right away! Jen is a mother to two girls, she likes to craft and she's very passionate about her baseball! You can read her blog, Raising Nats Fans, or follow her on twitter!




Why I Walk
by Jen


I’ve posted bits and pieces of why I walk in the Avon Walk for Breast Cancer every year. Why I skip … hop … walk … trudge … plod 39.3 miles year after year. All those verbs – because on different legs of that journey I have varying levels of energy.

Her first walk in 2010

Confession: it started out of spite. I picked up the flyer about the walk in the fall of 2009. It was a tough time in my life. And someone saw it and said “you would NEVER do that.” I’m a Jersey girl, and a part Irish one at that. The gauntlet was thrown and I embraced the challenge. I needed an outlet for some energy and some emotion, and I found it in a place I could focus my training with a specific goal in mind.

I hadn’t intended to do it after the first year. Until I started the fundraising, and I got so many comments along with my donations.

“Donating in memory of my wife.” I hadn’t known that was how he’d lost his wife.  
“Giving in honor of my mom.” I hadn’t known her mom was battling.
I’d mostly thought my world wasn’t touched by breast cancer at all. One of my dearest friends lost her mother-in-law after a several year battle, but that was all I had known. Donation after donation rolled in, with personal story after personal story. These people were friends of mine, and friends of my family. Co workers, and friends of friends, and EVERYONE had a personal reason for giving. And I had no idea.

Finish line in 2012

How had I not known? Why don’t we talk about it? I have two little girls, and I walk so that someday they won’t have to walk. They know the breast cancer ribbon and the significance of pink. And they talk about the effort the Avon Walk makes in the local community. “Mom, we know you walk so that some ladies who need help in Washington can get the help they need. We want to walk with you when we are old enough.” And I want them to follow through – to walk with me. But more than that, I want a world without breast cancer. So they don’t even have to walk. So they can throw their efforts behind another cause that they believe in.

I picked the Avon Walk at first because it was convenient. (As convenient as 39 miles can be. HA!) And because I needed the challenge. I needed to prove to myself that I could push to the limit and see the reward of the finish line. Along the way, I found that it does exactly what we need. It reaches out to inner city families. To folks who could not otherwise get the care they so desperately need. To women who need help with meals – with creating normal for their families as they fight to live another day.

At the 2013 walk

And to fund research at institutions locally – so that the survivors aren’t just surviving, but are thriving in their lives. Not just plodding through the days, though there will be days like that, but embracing the glory of another day to celebrate life beyond cancer.

5 years later, spite is long gone. I’m emotionally recovered from the need to walk for reasons of self healing. I am thankful for grace that has allowed me to begin again.  I am still walking – we’re at 156 official miles logged and counting. I now walk for all the women who are fighting every day. My aunt. My classmate. My friend’s mom. My friend. I hardly feel old enough to say “my friend has breast cancer”. But that’s reality. I am 37 and my friend is battling. The more years I walk, the more people I know that are impacted. I walk to reverse the trend. So that as the years go by, I know fewer people who have breast cancer turning their lives upside down.  

PS To read more about my connections to brave survivors, click over here and here.  And to read the journey of the 2013 walk, including the 248,000 PB&J graham cracker sandwiches, you can see that here.

Iron wins

Warning: this post is long and might seem jumbly. I apologize in advance but thank you if you manage to read to the bottom! 

So, yesterday I went in for the iron treatment. We were trying a different form of iron - one that is supposed to be easier to tolerate. The one they give to people who are usually allergic to iron and it's usually fine.

I went in nervous. Last time I was in the infusion room I was getting iron. And it ended badly. But I was also hopeful. It was supposed to work. We were going to start with a test dose. And then, after an hour, if it went well, I would get the full dose. And maybe not be exhausted for a little bit.

So, we got the test dose. It takes 5 minutes. Then they stop it. And watch me. Not in a creepy-we're-going-to-stand-1-inch-from-you-and-watch-you but the nurses were circling often and keeping an eye on me.

After a few minutes, I looked at my husband and said "my cheek itches." He asked if he should tell the nurses and I said no because one itch isn't an allergic reaction. Yet. I might have had a few more itches. And I thought if I just ignore it, if I just don't itch, it will all go away.

A few minutes later "Is my face red? It feels hot?" No, he said, it wasn't red. So naturally I wondered if it was all just in my head. He asked again if he should get a nurse and I said no, not yet. But I was starting to feel uncomfortable. My face was so hot I would have told you in the moment it was literally a million degrees (obviously though, it wasn't) and the itching was getting worse.

I started looking for a nurse and was just about to tell the husband to go get one, when one came over. "How are you doing?" with a hint of concern in her voice. "Yeah, my face is hot. And I'm itching" At this point my face was red to look at and within minutes I was an itchy mess.

10 minutes after the test dose. I asked my husband to hold my hand so I couldn't scratch. Then I'd tell him to let it go so I could itch. At this point I was getting benedryl and (I think) some steroids in my IV. I told them I had to go to the bathroom, with my flaming red face that I was scratching away at. One nurse commented that feeling like you had to go to the bathroom was common with an iron allergy. Except, I really had to go. So I think I told them about a dozen times I was going to pee my pants if I couldn't go to the bathroom. During all this they are taking my blood pressure, my pulse, my temperature, possibly pushing more medicine. There were 2 or 3 nurses by me - I don't quite remember. All I knew was I was going to pee my pants.

They were done doing what they were doing and told me I could go. I stood up. I went back down. Not so much fall,but me feeling light-headed, the room spinning, and knowing if I didn't sit down I was going to meet the floor pretty quickly. And also, I was going to pee my pants. I was convinced I was going to pee my pants. I'm sure everyone else was thinking about other things. [Side note: my husband said that I actually only said I was going to pee pants a couple times.]

I was rolled to the bathroom though. In a rolly chair. Which totally made sense to me at the time. I don't think they had wheelchairs back there so the rolly chair did the trick.

Anyway, came back, laid down and started shaking. All over. My hands went completely cold and clammy. I couldn't stop shaking. I kept trying but I couldn't. And my face was still on fire. I had a washcloth on it. Then they were checking me for a fever - apparently my temperature was starting to climb. They called it something. I'd swear a million bucks they said "she has Raymond". I also know that's probably not at all what they said either. So then I was given some demerol. And oh, I had to go to the bathroom again. In my mind all of this took place in mere minutes. I know it wasn't, but benadryl makes me a little loopy. And the demerol pretty much sent me into the completely drugged out zone.

But they wheeled me to the bathroom. And when we got back to the chair, I felt exhausted. I just needed to sleep. I was kind of falling asleep when the doctor came to talk to me. I think I mostly remember what we talked about, though I'm not sure at the time my responses to him made any sense. In my defense, I was pretty drugged up. I do remember he told me we wouldn't try any more iron for now. He told me to keep doing what I was doing at home. I also remember I told him I was just tired all the time and what could we do. Here's where I heard the most crushing thing - possibly we can do nothing. Being exhausted might be my new normal. Not what I wanted to hear, but I'll come back to this. After the doctor left, I just wanted to sleep.

Now, here's where things get weird. I was laying in the chair, resting, totally drugged up. I felt like my body was going numb. I thought I was dying.

[Note: I was not, and am not dying. Nothing even happened that I would consider an emergency. This was entirely in my head.]

But I felt dread. That with my body feeling numb (except it wasn't quite numb, almost weightless, like it wasn't there, if that makes any sense at all). I really thought this was it. Once, if not twice, the IV started beeping. I actually said "I'm dead now." It was very surreal feeling. But I wasn't scared. I didn't feel panicky. I was just so tired. This feeling came and went several times yesterday - even after I came home. I have no doubt it was the combination of the drugs, the allergic reaction, and my exhaustion messing with me.

Today I still feel exhausted (though I did make it to work and worked a full day) but the fatigue is lingering. I woke up feeling like I had a hang-over, but without the fun of the drinking.

But I keep going back to what the doctor said - this tiredness may be my new normal. I can't lie, it feels crushing. I just want to feel good. I just want to feel healthy. I just want to be energetic, bouncing around, ready to go. I don't like having to plan things around naps, or planning a late start knowing the day before I'll be going all day, so I'll need to sleep for several extra hours.

In the grand scheme of things it isn't a huge deal. It could be worse. I've been through worse. But still, the fatigue lingers on and on. And I'm so tired of feeling tired. It's almost as if feeling tired makes me feel more tired. It just weighs on me. I had a period this summer where I did feel pretty good and my blood work looked good, but it just bombed again. And I really dislike it.

On one hand I don't want to accept it, I want to fight it. But, let's be honest, I'm too darn tired. I'll keep eating well and do what I can. And amidst of all of that, I'm going to have to step back at times and accept I can't do it all (but, really, I never could do it all).

So. Yeah. That's where things stand. Sorry if it's a bit rambly!

Random Sputterings

Ginnie after graduation rapids on our trip!

Today, October 13, is metastatic breast cancer awareness day. Metastatic breast cancer (MBC) is the kind of breast cancer that kills 40,000 women in America every year.

Today I'm sharing a post by Ginnie. I met Ginnie when I went on my First Descents trip in August. Ginnie has stage iv (metastatic) breast cancer. I asked her to write for me and thankfully she said she would. Though I haven't known Ginnie for very long, her piece sounds exactly like her and I love that she is sharing with us today! Obviously, I picked Ginnie's piece to share today since it MBC Awareness day and she is living with MBC.

Without further ado, here is Ginnie's piece!

Random Sputterings by Ginnie

Ginnie and I bonding over our compression sleeves!

It’s October again and we all know what that means, it’s all about me!  And by me of course I mean all of us that have been affected by this super awesome and popular disease called breast cancer.  Aren’t I lucky? I have a whole month of people telling me all about how “aware” they are of breast cancer and giving me statistics about it.  Well I have to say I really don’t care about any of those statistics.  I am one of the “lucky” few that is metastatic, meaning that the breast cancer has already spread into another area of my body.  For me it is my liver and abdominal lymph nodes, for others it could be somewhere else like bones or brain.  So the only statistic I care about was back in January when my oncologist said I could die in two months or maybe make it to two years.

So before I ramble on let me give you a little background on me.  I was 29 when I went to my doctor about this weird lump in my armpit that I had noticed off and on for at least a year.  I was in nursing school and we were learning how to do breast exams and what lumps felt like.  I guess I got more experience than anyone else that day because I got to feel a real lump.  I saw my GP’s resident who told me not to worry about it because it was probably nothing but let’s just schedule an ultrasound to be sure.  Well the ultrasound wasn’t too bad and the doctor then said let’s schedule a mammogram and biopsy to look at my breast to check again.  Later that evening the breast surgeon called me at home and told me that I did in fact have breast cancer and I needed to do an MRI that night to check if it had spread at all.  It had, but only into the lymph nodes in my armpit. So I immediately started the most intense chemo that they had because I was young and “healthy”. Within a week of my first dose of chemo I went to the ER with the most awful pain I have ever felt to this day.  I was admitted to the hospital and then promptly coded and almost died.   

Luckily that staff was all over me and I woke up to a lot of strange people all around me and my mom crying in the corner of my room.  After that it just got more interesting but I’ll skip all the details and tell you that I did chemo, a bilateral mastectomy with lymph node dissection, more chemo, radiation and more surgeries.  Throughout all of this I was totally fine with having cancer.  It never bothered me and people always told me how positive I was or what a great attitude I had.  I have to say though it just never occurred to me to be upset about it.  Except once, the day it sank in that I was never going to have biological children.  I remember talking with my mom about it and sobbing hysterically.  We even talked about going to a fertility doctor and getting inseminated so I could have a baby before I started all my treatment.  I visited a fertility expert to find out what my options were, but I was not comfortable with the risks associated with those options so I decided to do nothing.  My doctor was insistent that I have my ovaries removed to lower my risk of recurrence but I refused in the hope that maybe, just maybe I could get pregnant when this was all over. 

 

So fast forward two years later and I discovered that there is never going to be an “all over”, I am going to die.  I am never going to have a child.  I am never going to get married and have a normal life.  I find that I can’t even really think of dating now, because how to you tell someone that you want to get to know them but oh wait I might die this year or next if I’m lucky.  That’s just not a conversation I want to have.  So I know that most women and men that have terminal cancer are older than I am.  Sure there are people like me that are younger, but for the most part people have already lived a long life and made a family and have people who love them more than anything.  I can’t help but be bitter over the fact that I waited to start my life and now I don’t get to have one.  I struggle with this pretty much every day in some way.  I am lucky in that I have a father who tries to help me when he can and two older brothers and sisters-in-law that have tried to be supportive.  My main support was always my mom, she was my best friend and rock until she died from Stage IV pancreatic cancer.  I am still dealing with issues that have resulted from that.

The only thing keeping me sane at this point is my bucket list.  There have been things I have always planned on doing but never did because life got in the way and now that I have lost my job thanks to cancer, I have plenty of time to do things.  I would tell any terminal patient or even anyone in general to do the things that will make you happy.  If there is a trip you always wanted to take but couldn’t, take it now.  Don’t wait.  I realize that I have been lucky because the chemo I was on all year didn’t make me very sick and that that isn’t the case with everyone.  I really believe that the reason I still feel great is that I have taken the time away to do these things.  I went skydiving in Ottawa and it was fantastic!  I left Chicago in June to drive old Route 66 to Los Angeles and had a great time discovering things along the way.  I spent time with cousins I hadn’t seen in years.  I drove up the California coast.  I visited wine county and went to a wine tasting.  I hiked Yosemite and ran into a bear that thankfully didn’t think I looked like dinner.  I drove through the desert of Nevada all by myself in my little car with more than a hundred miles of not seeing another person.  I visited the most beautiful National Parks and saw the most amazing scenery God ever created.  I met up with an aunt I hadn’t seen in years. I got to drive through the midwest and feel the breeze on my face and just enjoy my time without any thought for my disease.  I made it back to Chicago at the end of July.  After that I flew to Austin to visit my cousin and cross off some more things off of my list.  Then in August I drove out to Washington, D.C. to participate in a kayaking retreat for young adult cancer survivors.  It was awesome being able to meet more people that have gone through the same things I have and that I could relate to.  The next place I went was South Carolina to see the Atlantic ocean.  I figured since I drove all the way to the Pacific I had to finish my journey by crossing the entire continent.  I am looking forward to my next adventure even though I have no idea what I want to do next.  Hopefully I will figure out something soon. 

So what, you ask was the point of this blog? I have no idea.  I have chemo-brain.

P.S. If you'd like to learn more about MBC, here is what I shared about it 2 years ago.