The Good, The Bad, and The Ugly of 2013

To say that 2013 was a huge year for me would be an understatement. If life normally throws you curve balls, mine added screwballs to its repertoire. As I think over the events from the last year, I can't help but be relieved to have it all behind me. It has been a whirlwind of a year that has seen some pretty life-altering moments. In true Steenie fashion, there's been the good, the bad, and the ugly, and I wouldn't have it any other way.

The Ugly. Chemo. Is there anything uglier out there? I don't think so. It's funny that they talk about cancer and what it does to you, but chemo was the killer for me. I finally finished the 'bad' chemo. I didn't write about it often because there really are no words to describe what I went through. There were days that I wanted to curl up in a ball and die. Seriously, my family is the only thing that kept me going. I cannot imagine trying to go through chemo without the support and love of family and friends. It scares me. Chemo scares me. I don't know if I could go through it again. My doctor almost postponed my last two treatments because I was so sick over the fall months. I made him push on and I pushed through it. It was hard; probably the hardest thing I've ever had to endure. Just thinking about it now raises my heart rate and blood pressure. I start breathing heavy and feel like I'm going to hyperventilate. Thank goodness I had Thanksgiving with my dad and sister to look forward to and had a goal in mind. Those six sessions were the stuff of nightmares. I've never been so sick, in so much pain, and so mentally drained. But, I made it through it. I'm now going through the 'good' chemo cycles and will continue through June. This was the biggest battle and I won…I beat cancer.

Bilateral Mastectomy. Another ugly event this year. The surgery was fine, the recover was hard. I've already talked about the complications and pains from this battle. The drains from hell drove me crazy. The wound on my left side wouldn't heal. And, this was the beginning of the end of all muscle tone and movement I had in my body. But, again, I came out on top. I had a second surgery to repair the skin around the wound so it would close. Another battle fought and won by me. Take that, cancer.

The Bad. Breast Cancer. This was a big one. It was/is life altering. No one wants to hear the words 'you have cancer', but it happened. I've been battling it for eight months and will continue to fight it for a lifetime. It's scared and it's running. I've hit it with everything in my stockpile. Surgery to remove the tumor…check. Chemo to attack the cancer cells…check. Estrogen-suppressant pill to keep any cancerous particles from feeding…check. I was dealt a blow with this diagnosis, but I refuse to let it defeat me. It's taking it's best shots and I'm still coming out on top. It was a struggle, but I'll continue the fight.

Fibromyalgia and Osteoarthritis. It's been a struggle understanding and dealing with Sjogren's. It's a very hidden autoimmune disease that affects millions of people. In spite of so many people suffering from it, there is little known about it and people are unaware of the struggles of someone living with Sjogren's. Finding out I have Fibromyalgia on top of it really was a bit of a blow. It wasn't to be unexpected since Sjogren's typically is a secondary disease, but disappointing none the less. The fact that there is no cure and there is only managing the symptoms has been a hard pill to swallow. I'm a fighter and not having the weapons to fight with is killing me. It's like taking a plastic toy knife to a gun fight. I'm still fighting, but it's hand-to-hand combat and it's a close fight. I'm at my maximum on meds and am doing what I can to relieve the symptoms. Adding the arthritis to the mix has given these diseases an unfair advantage. While fighting cancer I found myself being sucker punched. As such, I'll start the new year with an epidural to try to relieve the pain from the arthritis and fibromyalgia. It's hard trying to fight on more than one front, but I'm doing what I have to do. We waited until the 'bad' chemo was finished before we created our battle plan for these diseases. The epidural is the first step and will be followed by physical therapy at some point.

The Good. Where do I begin? There have been so many good, positive, happy moments this year that I'm not sure if I have the time to talk about all of them. So, let's start with the beginning. My in-laws remarried this year. They've been divorced since my husband was young and it was quite the whirlwind romance this time around. The wedding was beautiful and I loved getting to dress up with my family and be a part of the special day. I mean, any day that has me shopping for new, pretty shoes is a win…haha. Family is so important and it was great getting together and making memories. I love seeing my mom-in-law so happy. She sacrificed for her kids and has been alone for a long time and to see that sparkle in her eyes is a treat for me. She deserves her happy ending.

Montana's graduation. This was the most amazing day this year, maybe the best in my life. My baby girl has grown up. How did that happen? I couldn't be any prouder of her as she's continued on her path to greatness. It was worth putting off surgery to watch her get her diploma. The day was beautiful and it was everything I hoped it would be. I enjoyed taking pictures for her senior portraits and I enjoying being with family as we celebrated her. And, she is worth celebrating. Montana is so responsible, has such a great heart, and is such a hard worker. She's compassionate, loving, and kind. I can't wait to see her life as she finishes college and starts her adult life. She is amazing.

Tristen's graduation. Navigating the world of Asperger's or Highly Functioning Autism has been quite the adventure. I've tried to balance Tristen's social needs with his academic needs and having high expectations without having unrealistic goals. It's been a long, hard-fought journey to get his social skills on par with others his age. Children with Asperger's have a hard time in social situations as well as other aspects in their lives. Things we take for granted as easy are difficult for them. My Tristen has such a personality and sense of humor. Yes, he needs his safe place and personal space. I've had him in Occupational Therapy and Speech for a few years now trying to give him any advantage I can to help his journey. Empathy and sympathy…those are the two things that Tristen lacked for all of his therapy. It was hard getting him to understand and express his own emotions. Getting him to understand others seemed impossible. It seemed impossible until my cancer. They say everything happens for a reason and I'm a firm believer. Tristen grew so much over this summer because of the cancer. He started asking how I was doing and showing concern. He said he was sorry for what I was going through…this was unheard of before cancer. He began saying I love you so often that I quit crying when he said it. Now, he asks others how they are doing and shows concern when they've had a bad day. He understands feeling and emotions better than he ever would have if I hadn't been diagnosed with cancer. As such, he's graduated from his therapy class and has assimilated wonderfully. He's made leaps and bounds that the therapists and I never thought he could accomplish. He's a wonder, my Tristen.

Thanksgiving. Getting together with my dad and sister was a definite highlight in my crazy year. I don't get to see my dad very often as he lives across the country. Seeing him two times in one year? Amazing. Dad and my Uncle Dennis visited in June after my surgery. It was the first time my Uncle Dennis had been out of New England. Both of them and my sister coming to Thanksgiving at my house? Well, it was the light at the end of a very long, dark tunnel. I don't get to be around my family very often. Most live far away and others just aren't' in my life anymore. I cherish each day that I get to spend around them. Thanksgiving was one of those special occasions. It coming right after my last 'bad' chemo was a great incentive to hang in there and keep fighting. My sister, her husband, my nephew, and her husband's dad came in from Atlanta. My dad and uncle came from New Hampshire. Even my uncle and grandfather from my mom's side came from Florida. It was a perfect few days. We played football in the yard. Well, I watched anyway. We fried turkeys and had an apple pie contest. We hung out and enjoyed each others company. It really doesn't get better than this. I finally got to exhale. It was a break from the war. No battles, just peace and love. Thanksgiving was what it was meant to be this year and I will be forever thankful.

Family. My family has to be the best part of this past year. The love and support they've provided has been so huge that I have no words to describe how much it's meant to me. My kung fu family raised money for my cancer treatments with kickball tournaments, kick-a-thons, and pink kung fu belts. Their support and help has been a wonderful thing. I appreciate and love my extended family for all they've done. My husband has been a rock for me. I wouldn't have made it this far without him. He's been there for every step of this twisted journey and loves me unconditionally. I haven't been very rosy and sunshiny this year and he's taking quite a few hits from me. He's held strong and loved me throughout this and I can't imagine my life without him. My children have been my motivation to keep fighting. Logan keeps me on a healthy path. He's been my go-to guy for drink refills, blankets, basically anything I need around the house. He takes the bad foods away that I'm not supposed to eat and makes sure I keep in line. I needed his stern hand and help. Tristen has been my sunshine. His growth has been a miracle for me and his smile always lightens my heart. I needed him to keep me smiling through this. Montana has been my pride and joy. She's grown so much and accomplished so much this year. She's held me when I've cried and has been my best friend. My in-laws have brightened my day and my mom-in-law has helped with so many appointments without complaint. I couldn't have made it through the 'bad' chemo without her help. My sister has kept me motivated and my nephew has brightened my day through the year. They're love has helped get me through this dark year.

The Christmas Spirit. I guess you could say that cancer has changed my outlook on life. I cherish each moment with my loved ones and have come to realize that family is the most important thing. Money and other material things don't matter. Family does. I reached out to my mother this year to let her know about my cancer. Although we've been estranged for about eight years, I felt a need inside me to keep her informed. My grammy passed away from cancer. It was a big hit for that side of my family. So, I reached out to my mom's side of the family, including her, this year. My uncle and grandpa came to visit for Thanksgiving. The same uncle was a chemo buddy for one of my sessions. It's been nice seeing them which made deciding whether to go to the family Christmas get-together harder. I haven't been to one in several years because of the estrangement and haven't really stayed in touch with my maternal family. While checking in on me, my mother mentioned the party. This was followed by an invite from my uncle. After much thought and debate, I decided to go and I brought my Montana. It was a huge decision and I almost backed out when Montana said she was going with me. But, we went and had a great time. It was wonderful seeing everyone again and visiting and my mother took the visit for the gift it was. And, it was just that…a gift. I can't promise a relationship out of this, though I will definitely get together with the family more often. But, I feel better letting everyone see me. I felt like they needed to see that I was okay. And, just maybe, I needed to see my family, too.

So, the end of the year is finally upon me. As I look back, I can't help but smile. There were definitely some downs and the cancer has been life-altering. But, that's not always a bad thing. My love for my family and my life is at an all time high and I know firsthand that you can't take life for granted. I plan to spend the next year enjoying life and enjoying my family and friends. The small things…that's what's important. I know it's cliche', but I plan to stop and smell the roses and I hope everyone else will, too. Thanks for going on this journey with me this year. The fight's not over, but some battles have been won. I can't wait to conquer everything else life throws at me. With the support and love of my family, I know there isn't anything I can't overcome.

Happy New Year!

Getting Lost in the Wind

I was lying in bed trying to ignore the horrible pain shooting through my joints and muscles from Chemo #4 when I received the phone call that saved me. I'd been living in the dark for over a week, just wishing it would all stop. I'd been to my oncologist for my pain and he just gave me pain medicine to manage it. Next, I went to my rheumatologist hoping he had an answer for the pain and he just gave me a stronger pain medicine to manage it. That was their answer; live with the pain and try to manage it. As one who hates pain medicine with a passion, I chose to live with pain and stay in the darkness. I knew it had to pass at some point and I just laid there waiting. I had no idea that one phone call from a friend would be my lifeline to the light.

I answer the phone and my friend says she needs me. Her boss moved locations and my friend no longer has a job. Her anxiety has gotten the best of her and she needs help. She needs to get her child to school and she doesn't think she can drive. See, my friend suffers from severe anxiety and I'm the one person who seems to understand how debilitating it can be. So, without thought to my own pain and problems, I tell her I'll be there in twenty minutes. I get dressed and head out the door. I get there, she opens the door, and she's crying. I hug her for what seems forever telling her she will be okay. She calms down, we get my nephew ready for preschool, and bring him to school.

Now what do we do? She tells me she can't go home. She can't sit there all day alone. I feel where she's coming from and I tell her I'm open for anything. "Can we go to the beach and walk around?" she asks. "Sure, that sounds nice," I answer immediately. Getting some fresh air with a dear friend sounds like great idea to me. So, we decide that Dauphin Island would be the ideal place to go and begin our journey. We don't see each other very often so we play catch up on the things that are going on in our lives. Rolling down the windows, enjoying the wind, we talk about old times as well. We've been friends for fifteen years and we've had our ups and downs during that time. We'd still been working through a very down period in our friendship and I'd consider the friendship still fragile at this point. But, none of that matters now. She needed me, I came, and that's all that matters.

Arriving on Dauphin Island, we head to the beach. As we are getting out of the SUV, I realize I don't have sunscreen or sandals to wear on the beach. I have to have sunscreen, especially for my bald head. And, I can't take the chance of cutting my feet in the sand or water. So, we make our way to the one store on the island and find some tacky shoes and strong sunscreen to add to my survival kit. While we're there she has a great idea. Let's get a souvenir of our day. I know it's silly, but it sounded like a wonderful thing. So, we picked out two Dauphin Island magnets and headed to the checkout counter. On our way to the store, we'd passed the entrance to the ferry that travels between Dauphin Island and Fort Morgan. On the way back, we passed it again and saw someone lining up for it. Wouldn't that be fun? "I haven't been on the ferry before, have you?" I asked. "Not this one. You know what we should do? Wouldn't it be crazy if we rode the ferry across just because." Sounds good to me. Let's just go. Who cares about the destination, let's just ride.

I circle around and get into the line. We eat our snacks, laughing about how crazy we are. And, really we just enjoy the moment of being together. We finally board the ferry, pay the toll, and get out of the car. Wow, this is nice. The wind is blowing. The birds are flying around us. The waves are crashing against the ferry. It's peaceful. We both close our eyes, breathe deeply, and exhale. This is just what we both needed, more than anyone will ever understand. It's so peaceful and calm. She's forgotten her worries for the moment. And, I've forgotten my pain. She shows me a powerful video of Sara Bareilles' new song 'Brave'. A perfect theme song for our day. We talk about our problems. She shares her troubles and I just listen. I share my pains and she just listens. We have each other again, the lost years forgotten. We're lost in the wind.

Before we know it, the ferry ride is over and we're two hours away from home. So, we drive. We head toward Gulf Shores and start making plans for a trip to the zoo with our families. We start feeling hopeful. "Let's get together more often, Steenie. I don't want to lose this." "Sounds good to me. We don't do anything anymore. It's hard with my cancer." My friend says, "I'm serious. Please stay in touch with me. I can't go back to before. You understand me. You calm me." "We aren't going back to that," I say. "I need a friend, I need you."

As we enter Mobile and realize the ride is almost over, we realize that life has changed for us. No matter the past, we ARE friends. And, we need each other. Life has put us back together for a reason. She needs someone who can calm her and help her work through her anxiety. And, I need someone who checks in on me, forces me out of the house, and needs me. I hug her, she thanks me, and we say goodbye. It's the end of a perfect day.

We've gotten together many times since that day. I've helped her through some rough moments and she's kept me laughing and staying upbeat. She's apologized so many times for calling me with her problems when I'm dealing with cancer. I know she feels guilty for it. But, what she doesn't understand is that she saved me that day. I was in a dark place and she brought me into the light. Her needing me gave me something to focus on instead of my problems. I'm good at helping others, it's what I do. And, I haven't been able to be me since this whole journey of mine began and it felt great to be normal again for a day. She helped me more than she will ever know. She helped me get lost in the wind. And, for that, I will forever be grateful.

The Day That Just Keeps Giving

Well, I'd hoped the scream would let out all of the negative juju from yesterday, but I don't have such luck. If I did, I'd be asleep right now instead of awake and running on three hours of sleep. My luck...one day there's going to be a phrase for it; similar to Murphy's Law or Bad Luck. It's going to be Steenie's Luck or something to that nature. I would say that it is really a lack of luck. And, I have a tendency to rub off on those around me, especially when said person is trying to do something that involves me in any way, shape or form. Yesterday/Today (It has been less than twenty-four hours.) was one of those days. Nothing seemed right, nothing was smooth sailing, and nothing went my way.

Yesterday, September 27th, was Chemo #4...the halfway point. I started the morning at 5:45am with a positive attitude and tried to keep it even with that sense of wrongness that lingered in the air telling me it would be better if I just went back to bed. I pushed through that, got Twin 2 (I really need some great code words for my family.) up for school and out the door. Twin 1 had an appointment that Daughter Solo was bringing him to, so he was blissfully enjoying the sleep while I got ready for my Chemo Day. I stood in the pretty vacant closet looking through my small amount of chemo clothes, tops with low front necks and a light jacket for the cooler building, and couldn't pick out a thing to wear. I've worn my same outfits time and time again and they are wearing down pretty quickly and I'm so tired of wearing the same four things. So, after I put on my usual outfit, I headed out the door to run to my favorite morning stop, my local Chick-Fil-A. After a quick in and out, I hit the road, weaving through morning traffic, and headed to my appointment.

Even checking in wasn't an easy process. There was an open lady, but she struggled to get her computer up and running to check me in for my appointments. So, I patiently waiting for the other lady to finish with the patient in front of me. After putting my arm band on, checking me in, and accepting my payment she attempted to print my receipt. Yes, attempted. Of course, the printer wasn't working properly (for me). She was able to print the receipt for the patient in front of me, and while we were waiting, the first check-in lady was able to print a receipt for the gentleman behind me. My lady told me that at least I was checked in, so I told her I was going to sit down and she could catch me on the other side. I entered the lab area pretty quickly, got my port accessed, and headed to the doctor's waiting area.
By the time I went to the restroom after checking in with the doctor's desk, the nurse was already calling back. Hey, things are looking up. Psssh, naive Steenie.

My eccentric oncologist entered the room, pushing his computer station, and started asking the usual questions. I started filling him in on the many symptoms that I had since my last chemo session. The two of us really are too much for each other and I feel that without my husband there, we have a hard time staying on task. That's a lie, haha. No, the two of us have a hard time staying on task anyway. We get the business done, but he has a tendency to go off subject with some strange things and I have a tendency to over share, talk fast, and ramble on excessively. So, between the two of us, it's a perfect relationship. Anyway, I told him about the usual side effects, realizing later that I missed a few. But, that happens and they were the less important side effects. While the discussion is going on, he looked down at his feet and snickered. The man had on two different shoes; very similar, yet different. So, of course, I had to share my story of showing up for soccer pictures as the coach wearing two sneakers. We talked a few minutes on the subject of his different shoes. He analyzed the differences (They really looked quite similar). One shoe was more of a casual sneaker; the other was a hiking shoe and had better support. Yet, they were both tan, suede-ish, brow-toed, and orange-trimmed. He had to wiggle his feet and walk a little. I'm still talking about my shoe adventure; both of us giggling. Yes, we really were meant to be together during this cancer thing; my husband leaving the room, shaking his head after every appointment.

Back on subject...my mind has a tendency to focus on the 'little' details, the things most people aren't concerned about. The following questions run down that line. I asked them in a pretty rapid fire manner, threw my doctor off completely, and had to repeat them slower so they could each be answered. My doctor must think I'm crazy with these weird questions. Psssh, Steenie Luck in effect.

Question #1. "On the second page of the weekly lab reports my glucose levels are high. Today was the highest. Does Chemo cause high glucose?" "No, but (There's always a "but".) the steroids can cause it to be high." Click, click, click. "Can you tell me what today's was, it'll take me a minute to get to that screen?" "Yes, let me grab my results." Hmm, guess I should have waited for him to finish from the last discussion. "It's a 179. I know the other weeks have been high, also." "I see. 134, 145, and today's 179 are the last three. I may need to put you on medication for it." "Okay, so, the medication can make it high. I was worried that I might need to watch for diabetes because it runs in my family." He gave me a dead stare. "I/It(sic) can push you into diabetes." Oh, f#ck!ng great. "Really?" "What did you eat this morning?" "My usual Friday Treat Myself Chick-Fil-A." "I wish you could check it every day. I'm curious (A favorite word of his.) to see what the levels are on non-appointment days." "Oh, I can do that. My mother-in-law has a tester that she is supposed to use regularly, but I'm pretty sure she doesn't." I wish she would take better care of herself. "I'll get it from her and check it."

Question #2. "Is it possible to get lymphedema on the side that didn't have lymph nodes removed?" I'm so ridiculous. Dead stare. "Yes, it is. It would be a very rare occurrence, but it's possible." Oh, sh!t. Can't I catch a break? Of course not, fool. You have Steenie Luck. I listed what I was experiencing and he frowned. "How do I watch for lymphedema?" "Measure your arms daily, keep a log, and watch for swelling." "Okay, I can do that. Also, did you see my bruise from last week's needle fun?" "Wow!" as he makes an ugly face." Let me look at all of your levels." Click, click, click. "Your levels have been high enough that I don't think we need to have weekly blood tests unless you start running a fever." "What?" I'm too shocked and in denial that I can have some of my Fridays open again. "What about my white cell count and my neutrophils?" "Even though they get low, they are high enough to not be a concern unless you run fever." Woohoo.

Question #3. "My allergist is concerned about my heart. I had an appointment to get my pulmonary test done and the results were great, even higher than expected. My lungs are great and my asthma is under control. I do have a cold, but everything is good. Everything is good, except my symptoms. I get out of breath just talking and walking short distances. My chest hurts when I lie down, feeling like a ton of bricks are on it, leaving me gasping for air. She believes I need to see a Cardiologist." "Well, that can all come from the chemo and is probably not something to worry about." "Good, so you don't think it's the Herceptin?" "I'm scheduling you for an Echo cardiogram just to be sure." Poo, he's just being optimistic. "Okay, great. Better safe than sorry." "Exactly, but I really think it's nothing." Doesn't he know me by now? Every one's last famous last words to me...I really think it's nothing.

Finally, I headed to chemo and got the poison pumping through my veins. But, where's my mother-in-law? The phone rang. She had some complications arise and was running late. This was delayed. This grandchild needed this. This grandchild needed that. Great, I've shared my Steenie's Luck. Lunch before I finish chemo is out now. New plan. I sent her to get Twin 1 to meet me at lunch after I finished my chemo. So, I sat through chemo without lunch. I'd turned Daughter Solo down for a brunch visit. Tis' the way of Steenie Luck. Finally, I made it to the restaurant around 1:30. I read in the car for a bit until my m-i-l called to tell me she was ten minutes out. She'd caught the long train (We have 30-60 minute long trains at times.) and was finally on her way. I went inside and ordered an appetizer. She and my son finally showed up and we ate lunch around 2:15. As I sat listening to my m-il's day, I couldn't help but feel bad that I'd spread my awful mojo to her. Her day was longer than mine. As we sat there, we realized that Twin 2 didn't have a key to get in the house and would be getting off the bus shortly. She rushed to the house with Twin 1. I headed to Target, because I had more refills (as always).

I spent forty minutes waiting for the refills to be ready while I browsed the Clearance aisles. Waited in line for the refills. Hugged the pharmacists. Got lectured by the pharmacists for being out and about. And, finally headed home in school traffic. Several bus stops later, I finally made it in the door at 4:15pm. It was a loooong day. Exhausted, I relayed my news to my sister and my husband; all of us feeling like I can't catch a break. This was the point when I posted yesterday's blog. AAAHHH!! That said it all.

Everything just keeps piling up and it's hard. So, insomnia hit last night and I didn't fall asleep until around 3am. I've been up since 530am with symptoms already flaring up and exhaustion setting in, too.
Not the way to start the post-chemo weeks. Since I'm awake, I figured I'd write a blog explaining my scream. I'll update some more in the next few days (if I'm up for it) because I still haven't told you all about Chemo #3. And, it was another doozy. Apparently, I get the privilege of experiencing something new with each treatment. But, that's another story for another day.

I leave you with this. A perfect dramatic illustration of my day and weeks.

Sometimes You Have to Let It All Out

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!*

*Story to follow tomorrow. I AM okay.

The Eye of the Hurricane

Chemo is a lot like a hurricane. A hurricane takes a toll on everyone in its path. You prepare as much as you possibly can beforehand. You board up windows and doors as a barrier between you and the storm. You stock up on food and water to keep your health up during the storm and the aftermath. You stock up on batteries, candles, and flashlights so you can see your way through the darkness during the inevitable power outage. Have you prepared enough? Are you ready to ride this storm out? Worries and fears set in mixed with readiness and preparation; now, it is just a waiting game.

The hurricane hits and it is too late to change your mind. Should you have run? Should you have hidden? It is too late because you cannot leave now. For better or worse, you are in this. The wind and rain pound your barriers over and over and over again. Sometimes a window breaks and the wind and rain find the weak spot and attack. You try to patch it up and block it with another barrier. Sometimes it works, but sometimes the wind is too strong. So, you have retreat to another room with the barriers still in tact. If you are lucky, you stay safe and ride it out calmly. If you are not one of the lucky ones, you may have a tree break and fall on your shelter. Then, there is a big hole in your barrier. You just never know if you are going to be one of the safe ones or one of the ones who has to fight through the hurricane. 

Finally, the eye of the storm is upon you. A break in the storm. You step outside, dig deep, and find what you need around your house to fix and patch the holes. There is a calmness that sets in and it feels good. You have changed your strategy and strengthened your barrier and you are hopeful that you will survive. There is even a bit of sunshine to make you feel warm. You can exhale and breathe normal again for a moment. You are feeling rejuvenated and stronger. This is what you needed because your barrier was cracking and you were ready to give up. But, the peace and quiet from the eye only lasts a little while. Soon, the clouds start to spin again overhead, the wind picks up a little, and you realize that the second part of the storm is coming fast. It is time to go back inside, hunker down, and wait out the rest of the storm.

The second half of the hurricane is deceitful and tricky. It seems a bit calmer than the first half. It is less windy and you find yourself getting a little complacent. Maybe this is not so bad. But, for the unfortunate ones, it turns out to be silent, but deadly . During some hurricanes, the tide is high and the flood waters start to creep into your neighborhood. As the water rises, you have to change your plans or you will drown. You feel overwhelmed and scared, but you know you have to fight. You are one of the unlucky ones who has to fight for your survival with everything you have in your stockpile. You fight to keep the flood waters from breaking your barriers. The water keeps coming, but you fight to get to higher ground. You fight to survive. You fight to live. 

At last, the hurricane is over. The wind and rain are finally gone. The flood waters have receded. The animals are back; the birds are chirping. The sun shines like it never has before. You go outside, hold your arms out wide, and spin, just enjoying the moment. You assess the damage and see what is left. It is time to clean up the damage, pick up the pieces, and rebuild. There is a lot of hard work ahead of you, but that is okay. Why? Because, you made it. You survived. You lived. You are a survivor. You are alive and healthy. You beat the hurricane....and it feels great.

So, how does this relate to cancer and my chemo treatment? You just have to read my other blog entries to see that I have already survived the first part of the hurricane and did as much preparation as I could. Where am I now? Currently, I am in the eye of the storm. But, the clouds are coming back quickly and the winds are picking up. I'm not sure how the second half of the storm is going to affect me. I believe it will happen just like my little story above. I will have to fight hard, but I will get through it. And, I will spin with my arms open wide like nobody's business when this is over. But, like I said, for now I am in the eye of the hurricane.

The Eye of the Storm.

I was supposed to have chemo #3 on Friday, August 23rd. But, that did not happen. I was too sick with my bronchitis and the doctor ordered more fluids, antibiotics, steroids, and anti-nausea meds. As you might expect, he was pretty upset that he had not been informed of my condition. I had called repeatedly and was even in the building for blood work and no one did anything to help. No one returned my calls even though I left messages stating that my doctor wanted to be informed of any more sickness on my end. The day I went in for blood work, a nurse practitioner came out and told me there was nothing they could do and if I wasn't better, I needed to follow up with my general physician. So, my very angry oncologist (I'm sure the nurses got an ear full) gave me my fluids, etc., sent me home with directions to call him directly (on his personal cell) if I get worse, and postponed my chemo for two weeks.

These two weeks have seen me getting better slowly. I slowly got an appetite back, got my taste buds back, and stopped getting nauseous. My hair has even started to grow back during this break from chemo. I have more energy, less pain, and, I dare say, I almost feel well. But, here is the problem...this is just a tease. I feel better just in time (three days before) to begin chemo again. And, instead of being half way through, I am still only a third of the way through with the 'nasty' chemo. This has been a nice calm and my body definitely needed it. I am not sure that my mind needed it, though. There are positives and negatives about this lull. I was feeling pretty down and this gave me time to rebuild my inner strength. But, now I am worried about the fact that I still have over half of my treatment left and concerned about how horrible it is going to be if the first third was this bad. I don't know. 

All I do know is that I am as ready as I am going to be for the rest of this battle. We have changed tactics and plans and prepared differently for the next session. My oncologist is scheduling me to get fluids, anti-nausea meds, and steroids twice a week the first week after chemo. Hopefully, this will keep my nausea down to a minimum and allow me to actually function and not get so sick. I feel rested and stronger and ready to fight. This would not have happened without my bronchitis and this break. So, I go for Chemo #3 on Friday, September 6th. And, I am as ready as I can be for this second half. I am ready to fight, to head to higher ground, to survive. I am ready to live.

Chemo! Need I say more?

Yes, it's been awhile since I've updated everyone. Yes, I've been avoiding it. Yes, there's been ups. Yes, there's been downs. Yes, a lot of the time I just couldn't get on the computer (thank goodness school started). Yes, I've been too sick to post at times. Yes, I'm alive and surviving chemo. But, the question I can't answer and the main reason I've avoided this is...do I make this next post, this first chemo post, a positive one or a negative one? Do I let you into my thoughts or just tell you the facts? Really, it's not a negative vs positive, I suppose. It's more of a play by play factual post or let you deep in my thoughts post. I still don't know as I'm typing this. Much as I do when I'm painting, I'm going to just start and see where I end up. Maybe that's the best way to do this. ***deep breath***

I started chemo on July 12th. I go in for my third session tomorrow and I'm terrified. I'm not sure I've ever been as scared of anything before in my life. Seriously, I don't want to go. If I could skip it, like one can skip school, I'd bail. Can I call in sick? For the next year? I don't think I've ever had to go through anything so hard or painful in my life. I mean, I guess I'll survive. I always do, right? I'm the survivor, right? ***deep breath***

So, chemo #1. David and I walk into the cancer center feeling a little lost and unsure. They direct us this way and that way as we begin the preparation. First, we get blood work done and get the port prepped for chemo. Ouch! Then, we head to the chemo waiting area. This takes forever. I didn't realize I had to wait so long to get the actual chemo. The chemo upload is actually not a big deal. I sit in the chair with a pillow and blanket as the nurse changes each bag of medication out as they empty. David plays on the computer. We both play Candy Crush (I'm known as the expert there and the employees bring me their phones to help them beat levels.) I make David get me food which aggravates him every time. A few hours later (6 hours the first time) we finish and go home. Wow, first chemo down and I feel fine.

I continue feeling fine the first few days and I'm excited because I had plans to visit my sister and now I can visit her. I head to her house feeling pretty good; a little nauseous, but feeling good. The first thing to really change is my tastebuds. Absolutely nothing tastes good. This was expected, but so different to really experience it. That's really the truth with it all. Everything, all of the side effects, are expected, but there's no preparing you. It's an entirely different thing to go through it and actually live it. My sister tries her best to take care of me as I fade quicker and quicker. I'm beginning to think I made a mistake coming here. I just want to be home. I head home after days of lounging around miserable with an upset stomach (nausea and diarrhea). As I'm driving my vision goes blurry. What the hell? Later, I go see my eye doctor and he tells me it's normal for chemo and it may go back to normal after I finish the treatments. My oncologist says it may be permanent and I may need glasses after chemo is finished. Oh, joy.

As the weeks go by, I go from okay to worse. Nausea, upset stomach, body aches, etc. Unsurprisingly, my first blood work shows that my white cell count is extremely low. Now, I get to stay home under lock and key. Oh, fun. We wash every fruit, vegetable, hand, body that is coming near me. I'm stuck at home, but I'm surviving. I begin my hair loss countdown. Yes, Montana thinks I'm crazy. "You can't predict when you are going to lose your hair, Mom." I tell her that I've read that it generally happens between Day 10 and Day 14. So, I start my hair loss watch on Day 10. My hair starts coming out in clumps on Day 14. I was right and Montana was wrong. It was itching and burning and coming out in clumps. So, I do what I do best. I take control and shave my head.

Chemo #2 is upon me now. As the days creep up, I find myself scared. I really don't want to feel sick again. But I can get through this, right? The chemo day, itself, isn't too bad. They have trouble accessing my port and have to get a bigger needle. The doctor adds more nausea meds to the process. We hear my name as the nurse and the medicine guy discuss how much of the meds and how long it should take for them to enter my body. She pours them in pretty quickly, which upsets David tremendously. I mean, one would assume the doctor said one hour for a reason, but she believes that it should be given in the 'usual' thirty minute regimen. Ah, lady...there's nothing 'usual' about me. ***deep breath***

This is where it gets tough. The truth? I haven't had one 'feel good' day in the entire three weeks since Chemo #2. Within 24 hours I'm feeling nauseous and the tastebuds are gone. By Tuesday evening (4 days out) I'm so nauseous I want to die and that is with the six anti-nausea meds the doctor prescribes. Diarrhea and constipation at the same time. Who knew that's possible? Okay, maybe not at the same exact time, but from one extreme to the next within an hour of each other. I hit every side effect that's common as well as every side effect that is rare. Chills and fever? Check. Body pain? Check. Weakness? Check. Nausea? Check, check, check. Hair loss? Check. Taste changes? Check. Low white cell count? Check. Fluid Retention? Check. Diarrhea? Mouth Sores? Check, check. Fatigue? Check. Now for the rare ones (10%ers like me). Abdominal pain? Check. Constipation? Check? Peripheral neuropathy? Big check. Muscle/bone/joint pain? Check. Headache? Check. Back pain? Check. Infection? Check. Flu-like symptoms? Check. Cough? Shortness of breath? Rhinitis? Check, check, check. Insomnia? Dizziness? Check and check. You get the point. ***deep breath***

Thursday night (Day 6) I find myself getting chills and running a fever. David is so worried that he tries to warm me up by loading me down with blankets and getting under the covers with me to use his body heat. I call the doctor the next morning and go in immediately for more blood work. The white cell count is low, but not so low that he wants to put me in the hospital. He does send me to the infusion room to get fluids, nausea meds, and antibiotics. After that, I feel a little better (not well) for a couple of days. Then, by Monday I'm sliding downhill again. I head to my family doctor on Wednesday to get checked out. She says I have a bad cold and adds a few days to my antibiotics. She also gives me a steroid shot, antibiotic shot, and B-12 shot. Oh, exciting. I have one day of feeling a little better before the coughing starts. On Friday (Day 14), I go in for more blood work to check my counts. My white cell count is back in the norm, but the lab technician is worried about me being sick. The nurse practitioner tells me that there isn't much she can do and to go home and see how the weekend goes. Of course, it doesn't go well. I head back to my family doctor on Monday after coughing up neon green phlegm, etc. She is worried that I have pneumonia. Fortunately, it is just bronchitis. Yes, when it comes to me, we are happy when it's 'just' bronchitis. I get bronchitis every August like clockwork. So, more antibiotics and another antibiotic shot later, I'm still not well. ***deep breath***

Chemo #3 is tomorrow. And, like I said, I'm scared. I haven't gotten well from the last one yet. I thought I got a week of feeling better. Where is it? Is it under the bed? Is it under the car? Where is it? I guess this is where I share a little. I'm really terrified. I don't remember ever being so scared before in my life. If I didn't have so many loved ones, especially my kids and husband, I wouldn't do it. I'd back out and take my chances. I'm not sure, for the first time in my life, if I'm strong enough. Maybe I'm a baby. Maybe I have it that much worse because of my other health issues. I don't know. It really doesn't matter. All that matters is that I find a way. So, yesterday I decided to stick it to cancer. It was a small, tiny battle, but it felt good. And, yes, I'm paying for it today; but, it was so worth it. I snuck off to the movies. I didn't let my husband and daughter know because I knew they'd stop me. I'm sure the theater was filled with germs, bacteria, and who knows what else. But, I didn't care. All I cared about is that the movie I've been waiting to see for two years got released yesterday and I was going to see it. Cancer has taken a lot from me these past four months and I wasn't letting it take this. So, I headed to the movies two days before my next chemo puts me out of commission again. Sad to say, I felt like this is the best I'm going to feel through the rest of this process (bronchitis and all); and, I damn sure was NOT going to miss this movie because of cancer.

So, maybe I still have a little fight left in me.  Maybe that movie was what I needed. I'll keep fighting. I don't have a choice. Too many people I love are counting on me. But, I won't lie and say I'm not scared anymore. What I will say is that Chemo Sucks!!!!!!

The Surgery That Just Keeps Going

As I sit here healing and waiting, I realize that I've only mentioned my mastectomy in passing. I have a habit of downplaying the actual cancer treatments, tests, appointments in lieu of talking about my emotions, children, and day to day activities. I think this is because I really don't want cancer to rule my life. My life is about so much more than the constant appointments, medication changes, diagnoses, etc. However, I'm feeling the need to write down everything today so I can remember things clearly, and so I can share my experiences with everyone. I mean, this surgery has gone from a blip on the radar to a full-fledged submarine, attacking from the depths beneath me. It IS the surgery that just keeps going...

On Thursday, May 23, 2013, I headed to the hospital with my husband to have my Bilateral Mastectomy. As we walk down the hall toward the surgical waiting room we pass a woman crying hysterically in the hall while a doctor consoles her. Not a great image to have burned into your brain before going into surgery. Although David and I don't say a word or look at each other, we're both thinking the same thing...did this woman lose someone during surgery? Okay, let's focus on something else, anything else. I head back to the pre-op area and get myself prepped for surgery. Before surgery I head to the Neonuclear department to prepare for my Sentinel Lymph Node Biopsy. They inject a blue, radioactive substance into my breast, surrounding my nipple. This may be the strangest procedure/experience yet. Awkward! They wheel me back to my pre-op room and I spend the next hour or so being extremely bored and hungry with David. Finally, it's my turn. They inject me with the magical 'time to go to sleep' anesthesia and roll me away.

The procedure, itself, takes approximately five hours. I'm glad I'm not the one waiting. David eats, plays on his phone, worries, etc. He gets a bit of a scare when he gets paged around twenty minutes into the procedure. They tell him that they just wanted him to know that they've begun. Really? You had to scare me like that just to tell me you've started? Like I said, glad it wasn't me waiting. If the procedure was bad, the recovery was worse. I don't wake up from anesthesia well. I've learned it's because of my Sjogren's and there's just not much I can do. It takes longer for me to wake up. The first thing that I'm aware of when I awake is that I'm sick to my stomach. Nausea takes on a whole new meaning. They give me a patch before surgery to help and they give me dose after dose of Phenergan when I wake up. This need to throw up (I never actually do throw up...that'd be too easy) battles with my need to quench my thirst (another lovely Sjogren's side effect) for hours. I suck on one tiny ice cube to soothe the pain in my mouth and throat only to throw my stomach into fits of pain. Recovery takes four very long hours. Because I'm in recovery after visiting hours, David has to wait in the waiting room, only getting to see me for ten minutes every hour. It's a rough, stressful four hours for him.

Finally, they move me to a room. It's 8:30 pm by the time I'm settled, awake, and not nauseous. I talk to a few people on the phone, including my sister. I just want to see my kids, please bring me my kids. Montana, already en route, shows up first. We visit for a little while before she heads back out so I can rest and try to eat. I drink some chicken broth and lots of juice. David catches me up on the surgery and recovery. He tells me that the tumor has doubled in size. It's now 3 cm, but the doctor successfully removed the tumor with the breasts. Finally, my sister comes into the room. Wait. Where are the boys? It's after visiting hours so the security guard won't let the kids up to see me. David is with them now. What? That's sooo NOT happening. I need to see my boys and they need to see me so they can know that their mom is okay. My sister can see that I'm upset about this and finds a nurse. The nurse saves the day and lets the security guard know that it's okay for the kids to come up. We visit for a few blurry minutes...yes, I'm still heavily medicated and everything happens in flashes. The boys are quiet, but you can see that they are happy to see me. My three-year-old nephew sits beside me, lightening the mood. He gets a hold of my phone and takes pictures that I found a couple of weeks later (I think he has a future in photography). Thanks to him, I have a record of my surgery.

On May 29th, my sister brings me to my first post-op appointment. Dr. Boehm tells me that the tumor did, indeed, double to 3cm. Therefore, my new diagnosis is Stage 2A Breast Cancer. He can't actually tell me if it grew in size in this last month since my initial diagnosis or if all of the imaging tests were wrong. Yeah, right...ALL of the tests were possibly wrong? Clearly, it grew and he just doesn't want me to worry. My sentinel biopsy showed that my lymph nodes are clear...no cancer detected. My HER2 is definitely positive and I definitely need chemo. The drains have to stay in until they get under 40ml for a 24 hour period. Everything looks great, let me take some staples out, etc. See you next week. And so begins my continuous post-op appointment life. June 3rd...drains stay in, more staples removed, see you next appointment. June 10th...drains stay in, more staples removed, see you next appointment.

Actually, June 10th sees the creation of a new beast. After I get home, one of my drains loses suction. Hmmm, I don't think that's supposed to happen. I call the doctor and he has me come back in to see him. He believes he took out one too many staples because there is an open part of my incision. He stitches it shut and watches the drain to make sure it has suction. See you next week...if only it were that simple. On the late afternoon of June 11th, I find myself with no suction in the drains again. I call the nurse and she sets me up for an appointment the next day. June 12th...open incision, more stitches.

On June 17th, my drains are removed, and the rest of the staples are removed as well. Yes, yes, yes. Now I can enjoy the rest of the days of my dad and uncle's visit. There's still an open incision, but my surgeon believes it will heal with some antibiotics and time. It should be healed in time for my chemo. Let's cross our fingers because that hole looks big to me. The drains are removed early, but I can't have chemo with the drains in so my doctor believes it's better to remove them. Ding dong the drains are gone. I leave excited and ready to do a dance. I bring my dad and uncle to a boardwalk and local park in search of alligators and enjoy the rest of their visit. The more I do, the more I worry about that open incision. It doesn't look like it's healing and I decide I better sit and rest until it heals. Stupid hole holding me back.

Finally, June 21st, Chemo Day is here. This is my second attempt at beginning chemo and I'm ready to get the show on the road. The first appointment, scheduled on June 7th, was postponed because of my surgery postponement. This is fully understandable because I needed four weeks to heal from my mastectomy. I've had my echo cardiogram baseline done (right after surgery...not fun) and am ready to start the treatment. Not so fast....that open incision is causing problems again. No chemo for you. Ugh! Seriously, I knew chemo was going to get postponed because of the gaping hole in my incision. My oncologist looks pretty shocked at the size of the hole and calls my surgeon. He thinks it should be packed and my surgeon thinks it needs to be left open to heal. Hmmm, this is fun. I really hate this hole.
So, he postpones my chemo for two weeks. He wants to give the wound time to close up and heal. If it's not healed, he's going to try something he's never done before. He'll start the Herceptin part of the treatment before he begins the actual chemo part. He really doesn't want to wait to attack the her2 in my body, so he'll try something new just for me. What? Experimenting with a new treatment just for me? Of course we'll have to do something new just for me. Did I expect anything less?

On June 24th, I head to another post-op appointment. I'm so tired of these. My surgeon checks out my nice hole and a couple of other troublesome spots on my incision. As soon as he looks at the open incision, I can see the worry in his eyes. Yep, that's my large hole. It's not going away. He thought it was closed more when he looked at it last week. He believes the incision has grown and is worried. Clearly, it's not healing. He suggests surgery to close the hole and repair the other spots. He wants to do the surgery the following day. Hmmm, that soon? Another surgery for me...oh, joy! I leave the office, call my husband, sister, and everyone else and start making plans for surgery. Who's going to take me? Who's going to take Tristen to his appointment? Who's going to keep an eye on Logan and make sure he's fed? Just another day in the life of Steenie.

On June 25th, David and I head to the hospital for surgery again. Pre-op waiting again. Nausea patch behind my ear, again. Surgery, again. Post-op problems, again. Actually, this post-op experience was a new one for me. Gone is the nausea. Gone is the dry mouth and throat. Instead, I'm faced with an entirely new post-op hell. I wake up as I'm leaving the operating room. I awake to my teeth chattering and my body shaking as they push me through the hall. I'm freezing. As I'm in and out of consciousness, I'm aware of the nurses running around and talking with a sense of urgency. I'm freezing. They throw blanket after blanket on me to warm me up. I'm freezing. They put this cover over me and tape it to the mattress and wrap my head with blankets. I'm in a cocoon and I'm freezing. This is getting weird. Then, they start blowing hot air into the cocoon as I drift back to sleep. I wake up many times and try to convey to the nurse that I'm still cold. I'm freezing and there's an oxygen mask on me. What's going on with me? As I continue to drift in and out I hear phrases, like "...really cold in the operating room...", "...hypertension...", and "not breathing on her own...". When I'm awake and warm, they move me to post-op and I share this with David. He thinks I'm crazy. I ask the nurse and she says the anaesthesiologist wrote high blood pressure as one of my known problems and she doesn't know why they wrote it if I don't have high blood pressure. She thinks I'm crazy. This is all so weird. (No, I never get the answers to this mystery.) Anyway, I'm released from the hospital and sent home for recovery and spend the next days resting, healing, and just scared to move out of fear of re-opening my wound.

Side note...on June 27th, I go to my checkup with my rheumatologist. I complain about the numbness in my right thigh and how it's turned into pain since my first surgery. He orders an x-ray of my back and increases my medication dosage. On July 1st, I receive the results over the phone. Yes, I have Osteoarthritis in my lower back. Physical Therapy would be the normal course of action, but is postponed indefinitely because of the chemo. The nurse believes there is no way I can manage therapy while going through chemo, so I just need to manage the pain and symptoms with anti-inflammatories, ice, heat, and salt baths. Damn you, Cancer! Later, as I tell my oncologist about this diagnosis, he tells me this means he doesn't want to do the immunity booster shots as planned because the shot can cause bone pain and will cause problems with my arthritis. This means I definitely can't go back to work during chemo. Damn you, Osteoarthritis!

On July 1st, I head to post-op appointment #562 (at least, that's how it feels). Finally, it seems we're heading for the top of the mountain. The incision looks great and the gaping hole is gone. The dreaded drains come back out because they are below 40ml already. The skin looks healthy and healed. Everything looks great. My surgeon removes most of the stitches and the hole stays closed. He tells me that I may have to have fluid removed with a needle, but he wanted those drains out for chemo. That's okay, I'm just glad they are out. He wishes me well with chemo and tells me he thinks I'm going to have no trouble with the side effects. I tell him my oncologist thinks otherwise because of all of my other health issues, but that I'm hoping it's easy for me as well. He then tells me that he thinks I've faced a lot of adversity in my life and that this will be no problem. It does feel good to have someone with that much confidence in me. His nurse always makes me feel good, telling me that I'm the exception (and, meaning it in a positive way...haha) and that she wished everyone had my spirit. So, I leave this appointment feeling stronger than I have in awhile. I CAN get through all of this. I WILL get through all of this.

On July 5th, David and I pack my chemo bag and head to the Oncologist's office. The lab tech puts my port catheter in and draws blood. Is this really happening? Next, we see the oncologist. I explain about my emergency surgery (apparently, it's an emergency when they bump everyone and schedule you so quickly on the surgeon's non-surgery day) and show him my incisions. We talk about my arthritis and what it means for my treatment. He's relieved that I say I'm thinking I won't go back to work. He'd planned on that shot to boost my immune system for work and the arthritis throws that out. So, now it's a "definite" no work instead of a "maybe" no work. I can live with this...spend the next year focusing on my health. Not a bad thing. Decision time...do we start chemo, or at least Herceptin, or do we postpone again? "Hmmm," he says. "I'd really like to see what happens when all of the stitches are taken out. What do you think?" What do I think? I think I'm over postponing life. "I see no reason not to postpone a week. I see nothing that is urgent...blah, blah, blah...let's wait a week." Crap...another week of my life on pause. "So, let's schedule your chemo for July 12th." Crap...I'm supposed to head to my sister's that weekend and my birthday is on the 15th. So, I ask him if I'll be up for driving to Atlanta and he tells me to pack my nausea meds and be prepared for fatigue. Yes, I can still go. One thing I don't have to postpone.  I'll deal with the rest.

So, now I wait. The new story of my life. Seriously, David and I have talked about it and I'm really okay with this last postponement. Instead of starting the Herceptin first and waiting three weeks to begin the other chemo, I'll be able to start all of it at once. It's worth the wait this time. My next post-op appointment is on July 10th. My surgeon will remove the rest of my stitches and will make sure the hole is gone for good. My incision looks great and I don't expect any further complications from the surgery. Soon, this battle will be a distant memory.

Whew, it's been quite a climb to the top of this mountain peak. Of course, there are more mountain tops to climb in this mountain range that is cancer, but I feel like I've made it over the highest peak. I've removed the cancer tumor from my body. That's quite a feat. I've healed from two large incisions created from the removal of my breasts...no small feat. I've met the beast head-on and sent it defeated and scared, whimpering in the shadows.

 As I continue my fight, I can't help but feel on top of the world right now. The rest of the mountain range looks like ant hills in comparison to the peak I just climbed. I may face more obstacles and complications in the future battles to come, but I'm feeling great and I KNOW that I will win this war.

Father's Day

Every year we celebrate Father's Day by cooking out, giving presents, letting dads know how much we love them. You know, the typical Father's Day. We post the pictures of us with our dads on Facebook letting them know how much they mean to us. As wives we ensure that the kids have gifts to give the dads. We give the typical golf equipment, clothes, shoes, grilling accessories, etc. Perhaps we even get a little complacent in our celebration of the wonderful fathers out there. Well, this year Father's Day is different for me.

There's no celebration, no grilling, no gifts this year for my husband, the father of my children. It's hard to plan, shop, and wrap when you're still recovering from a bilateral mastectomy. This week has been a rough week in my household. I still can't clean, cook, shop, etc. without my incision opening or the drainage doubling. Sitting on the cancer chair....that's my life now. To say I feel like crap about it is an understatement. This sitting and resting process is killing me. My husband says he's okay with doing nothing and I know he means it. That's why I married him. He is the most loving, wonderful man I know. His concern and love for me is endless.

Even though we aren't celebrating today, he has had quite a grand weekend and I at least have that to soothe me. On Friday, he became a disciple of Grandmaster John Graham, Sr. in the art of Wu Chu Quan. It's a huge honor and I'm so proud of him. On Saturday, he tested for his 2nd degree black belt under that same system. I was unable to attend because of the complications from my surgery. My daughter saved the day by texting me pictures and videos from her iphone. She has such a wonderful heart. I thought about ignoring my husband (he was the one who insisted I stay home) and heading to the gym to watch him anyway. In the end, I didn't go because I didn't want him to be worrying about me instead of concentrating on his forms. He's that kind of man...my health is more important than anything to him.

I've been doing a lot of thinking these last few weeks and as Father's Day approached, I started feeling more and more the weight of this holiday. As I've said before, I'm a realist and the meaning of Father's Day has taken on a deeper meaning this year. As I sit and think about the future, I can't help but think about the day when I leave this world. I know the percentages, the odds, the statistics of my survival from cancer. Yes, the percentage of survival is high with Stage IIA. But, anyone who knows me can attest that the odds are forever stacked against me. Find the small percentage and that's where I belong. I'm a rarity, an oddball; hell, I swear I'm an alien life form unfit for this world. So, what happens when I'm gone? I used to worry about how I had to live until my kids were adults. Where would they be without me? How would they survive? Doesn't every mom worry about this? It's not even about the cancer, but more about being a mom and wanted to be with your children forever because no one else is good enough to raise them.

Well, I have my answer...they will be with their dad and they will thrive. They will grow into a beautiful, successful woman, and fine, responsible young men. As much as I want to be there for their entire lives, it just may not happen. No one knows the future and I have a lot of obstacles in mine. My husband is the most hands-on dad I know. He's there for our children in every way possible. He took my daughter in as his own from day one and has been an important part of her life. He went to every softball game, coached her, spent hours practicing with her. Her successes have been his successes. And, he's equally involved with the twins. He watches soccer games, attends award ceremonies, helps with homework. He's teaching them to be men, to respect others, and to work hard. There's no better role model and no better father out there.

So, when I'm gone, whether it's from cancer or some other thing, I know that my kids are in good hands. They will be with their dad. That's what Father's Day is to me now...celebrating the man who holds the future of my children in his hands. Maybe it's a little strange that I'm not showing him love and appreciation in the common Father's Day ways, but I feel like I'm giving him something more. I'm giving him my confidence. I'm giving him my approval. I'm giving him my children. As a mother, I'm celebrating the love of my life, father of my children, and letting him know that he's the future of our children and I'm at peace with that.

Happy Father's Day, babe! Thank you for being the best dad in the world, and thank you for your endless love. You are my rock, my life, my future. I love you!

I'm Ready to Get Off This Ride

I know it's been awhile since my last post. It seems I'm not very good at keeping everyone updated. Part of this is because I've been healing and recovering from my Bilateral Mastectomy. Part of this is because I have so many thoughts running through my head that I don't even know where to begin. And, part of it is because it's summertime and who can get the computer from two gamer sons? So, if this post is scattered, it's because my brain is so scattered right now.

I had my Bilateral Mastectomy three weeks ago. It's been a long three weeks. A little side story...I'm a closet Keeping up with the Kardashians fan. It's the family dynamic that keeps me watching. All families have their drama, but at least they come together as a family. I love that about the show. One of the things I think is interesting is their Peak and Pit sharing. So, I'm going to take that from them as I've had many Peaks and Pits in the last few weeks.

Peaks
The breasts are gone, along with the tumor. I expected to feel some remorse or feel uncomfortable without the tatas. I mean, I had huge ones and they've been a part of me for quite some time. I'm having to go through my shirts because some make me look like I'm wearing a muscle shirt, but I can't wait to find a new wardrobe that works with my new look. I feel confident and even proud to show my badge of honor. I'm going to be a breast cancer survivor and I have nothing to hide. I'm a warrior and proud of the sacrifice I've made.

A sentinel biopsy was done on the auxiliary lymph nodes and the results came back negative. It's a great feeling knowing they haven't spread to my lymph nodes. I feel like that's the kiss of death. The lymph nodes scare me as I remember the cancer spreading to my grandmother's lymph nodes. It's a relief.

I cut my hair before surgery in preparation for chemo. I mean, it's shaved using a 3/4 guard. And, the funny thing is, everyone is loving it. I'm enjoying the freedom of not having to fix my hair. I can shave it into a mohawk if I want to be a little crazy. At first, it took a little getting used to, but now I'm really digging it. I donated my hair to Pantene's Beautiful Lengths. I even inspired a friend to cut hers short and donate it in support of me.

Speaking of support, the love and concern everyone has shown has been amazing. I feel blessed to have so many people in my life who care. I'm actually not good at showing my emotions and it feels weird having all of these people show me love. It's been more than I could have expected and I appreciate every one of you.

Pits
The tumor is gone, but it doubled in size. Now, I officially have Stage IIA Breast Cancer. That's scary. My survival percentage just went down 10%. It took about a week for that to sink in and for me to really think about it. I became depressed, sad, scared, and angry. Why me? I try to avoid that question, but I think one just can't help but ask it at some point. Did it grow or were all of the tests wrong? No one has an answer. I know it's Her2 positive so it's aggressive. It doubled in size in one month. What would my outlook be if I hadn't found it until my annual checkup in August? I cried, I yelled, I wished I were dead. Thank goodness for my husband. He was there for me even though the same thoughts were going through his head. He kept saying it was okay. That was the word he got from some reading material. Honestly, the okay bit drove me crazy. Every absurd thing I threw at him was returned with the same okay. Finally, I threw the what if I killed myself...is that okay? No, that's not okay. Not that I would kill myself but the okays were driving me crazy. Of course, he did make me laugh in the end. It's amazing how he helped me go from crying and yelling to laughing. As he says, it's okay!

The drains from hell are driving me crazy. Three weeks later and I still have the darn things in. I feel like they are attached for life. I'm pretty sure I'm having an allergic reaction to the plastic. I have to clean the tube sites daily and re-bandage because of the pain, I have soooo much drainage. I'm supposed to get them under 40ml in 24 hours. I'm holding steady at 70-80. The surgeon is taking them out Monday no matter what because I start chemo next Friday. I can't start chemo if I still have the drains in so they must go or I'd have to postpone chemo and the doctor doesn't want that to happen because of my active her2. So, there's a very likely chance that I will have fluid buildup and have to get a needle stabbed into me to drain the fluid. Oh, joy!

As if the drains weren't enough of a problem, I have a two inch area on my left incision that refuses to heal. The surgeon had to put stitches in after the staples were out because when I move my left arm it creates a hole. I can hear the air enter and feel the drain when it stops getting a suction. I've been to the surgeon three times this week to get areas stitched. I'm pretty sure my being a redhead is part of the problem. I don't heal very well. It's a slow process. Add my Sjogren's into the mix and this is what I end up with...an open incision.

Today has been the worst day so far. I had a few great days and spent them out doing things. I went to the park with a friend. I want to the tattoo parlor with my daughter and bestie. I went out to eat. Basically, I left the security of my house and went out into the world. What a mistake. I started feeling bad yesterday. My right side started bothering me. The drainage doubled overnight coming in at 158ml for the day. I started feeling light-headed and nauseous this morning. My head was pounding and my side was hurting. I started running a fever of 100.7 and felt like I was dying. My arms and legs started tingling and I felt like I have the flu. I took some tylenol and that broke my fever. I took my Sjogren's and Fibromyalgia medicine and that helped with the tingling a little. No, I haven't called a doctor because my surgeon is in surgery all day. And, I don't know which doctor to call. Is this an infection? Is this a Sjogren's episode? Did I catch the flu? Knowing my luck, it's a combination of all three. We'll see how I'm doing in the morning. I may call all of my doctors.

Stand Tall
So, as you can see, I've had a lot going on lately. It's been a roller coaster ride for sure. I'm ready to get off now though. And, I haven't even started chemo. I think if it weren't for the support of my friends and family, I wouldn't make it through this. I'm amazed at the lengths they go for me. Me? It really is strange to me to have so many people who care. I had the friend who cut her hair, too. And, I had my bestie and daughter get tattoos in support and love for me. Even through the pits, I've had some great peaks. I really just want to say thank you to my loved ones. I couldn't fight this cancer without you!

Here's the tattoos my crazy daughter and bestie got for me. It was a fun night and I love them both even if they are crazy.

                   

First Strike

Soccer. I made the tough decision not to coach Twin 1's soccer team this year because I was tired and hurting from my Sjogren's. I should have known that was futile. After the first game, he tells me that the coach said a cuss word. Ok, I laugh, sometimes adults say things in the heat of the moment, so we'll just let it pass. By the second game, it's apparent that he knows nothing about soccer. That's okay, coaches are parents volunteering. It's going to happen. The next week, I listen in on part of the practice and I hear the coach tell the kids to "Get their asses right here." What? Are you kidding? I watch him, listen to him, get a feel for my target. By the next weekend, the team mom is letting the coach know that there's a parent with soccer experience willing to help. I tell my husband that the coach is a woman hater. I get a bad vibe off the man, and he's not going to accept my help. As I'm talking to other parents, the coach is speaking to my husband asking for help. When I walk up and my husband tells the coach that I'm actually the one with soccer experience not him. The coach abruptly ends the conversation and says he needs to leave, but that he would love my help. Yeah, right!

The Coach is A Jerk. The following week I'm sick..mostly sick from worry. This is the week I have my mammogram and biopsy and am still waiting on results. I ask David to go to practice for me and give him some drills for the forwards. The coach uses him as a ball retriever and that is it. During the following game the kids run and play their hearts out. It is a better game, but they are exhausted by the end of the game. No one is playing positions and they are all running the entire length of the field for 120 minutes. The parents are so proud, but I can see the anger in the coach's eyes. I know he is going to yell at those children. I hate it when I'm right about things like this.

I rush to the place where the team is meeting and where the coach is lecturing. He is yelling at the kids, pointing them out individually, terrorizing these kids. He is yelling at the goalie, telling him that he is awful and has let more goals by then the other goalie has let by all season. He berates one child for kicking the dirt and not paying attention. Then he proceeds to attack another child for being too aggressive, telling him that he is going after people instead of the ball. He then demonstrates this by tackling (and catching the kid before he falls) the child, knocking the breath out of him. At this point, I'm vibrating with anger. If the child's mother wasn't beside me I wouldn't have been able to control myself. I stay quiet because I do not want to attack this man in front of the children. It takes all self-control to stay where I am. After this, he points out one child and says he was the only kid hustling and running the entire game. Everyone else, according to him, gave up. What? My child ran the entire game and he made wonderful plays. These kids were exhausted! And, as if he weren't being an ass enough, he follows with the "we're going to run the entire practice for not trying" spiel.

Oh, I am mad! I immediately grab my child and tell him not to listen to the coach. He looked great and he would not be going to the practice. I raise my voice and say that the coach needs to run since he didn't know how to coach. By this point, other parents hear me and finally figure out that the coach was going crazy. They start talking, and the ball finally started moving. Enough is enough! The team mom calls me a couple of hours later and informs me that we are going to have a parent meeting with the coach. Poor, naive souls think us talking to him is going to change him. Yeah, right. The guy is a grade A D-bag and nothing is going to change that! But, I'll go to the meeting and voice my concerns with everyone else.

Haha, the Meeting is a Joke. Essentially, we try to voice our concerns and he yells. He tries to say running is common when teams fail. I counter with "it's not the kids' fault that they haven't been taught their positions, that's your fault as a couch." He counters with, "I taught them positions the first day." I counters with, "hahahahaha". Yeah, I think I just p*ed him off more. Then he starts making excuses, we counter. It keeps going back and forth. I tell him it isn't okay to behave this way and he steps at me raising his voice. I step at him and tell him he needs to watch himself because I'm not a child and he isn't going to talk to me that way. He gets really mad, stomps his foot, says he doesn't have to put up with this, and runs away like a child. Really? Adults act this way sometimes? His wife tries to say that he asked for help and I didn't help. Excuse me? Who's been warming them up every game because the coach is late? Who offered help and was turned down because I'm a woman? P-lease! What a productive meeting.

He cancels the next practice with an excuse of an out of town emergency. The team mom asks me to fill in and coach. Sure, I'd love to help the kids. But, can it be that easy? Of course not! The coach informs her that I can't be on the field because I'm not a coach and don't have a background check. Guess what? I've had several background checks through the park. I've been a coach for years, so Ha! Finally, the team mom involves a board member, the head of the soccer division, and he okays my coaching for the day.

The Beginning of Change. I don't know how many people have been around abused children before, but it's a heartbreaking thing to see. That moment when you realize that you haven't done enough, you've let this child down, you didn't do something fast enough. I have this revelation at that next practice. The minute I gather the kids, I realize that we, the parents, failed our children. We waited too long. All I can do from this point is change their course, fight for them, and give them everything they need. As soon as I sit with them they ask me if I will be their new coach. They don't want him. Please, please, please be our coach. And, I have to tell them no. I vowed at that moment that he wouldn't be their coach for much longer. I teach them everything I can in that one hour and I try to have fun with them. I try to set them up for a better game and teach them positions while telling them that they have to listen to their coach if he says something different. During this practice, I see the kids team up on one of the other kids. They tell him that he sucks as goalie and that he's awful, and so on. I shut that down quickly. As I walk with him and tell him not to listen to them, he tells me something that will stick with me for years. "That's okay, when you've dealt with bullies at school forever, you learn to ignore them." What have we allowed to happen? These kids are attacking each other out of survival. He's taught them to be aggressive, mean, and ugly. There's no team here, only scared individuals. My heart breaks.

We meet with the first board member that night. Everyone is willing to give the coach another chance if he is willing to apologize. We just want him to change. Yes, we're willing to give him a two week probational period. And, that was the way the meeting was going. "NO! No, it can't happen this way," I speak up. "We've given him too much time with our children. He's not going to listen, he's not going to change. Two weeks is too long. This kids need help now." So, the board member agrees to one week probation with a board member watching the practices and game. Okay, I'll agree to that if the coach is willing to change. No yelling, cussing or aggressive behavior in any way.

His wife shows up at the next practice claiming to be the real head coach of the team. She practices with the kids as we all watch in anticipation. The second board member makes his way over to me and the rest of the parents. He gets our story and then questions the wife being out there. He says that the coach is not returning phone calls and they are going to have a meeting about everything and will let us know the outcome. Saturday, I'm informed that she will be the head coach and I will be the assistant head coach if I'm willing. I must be on the field with her at all times. They still haven't told the coach because he isn't answering his phone and it will all be official by the next practice. So, I show up at the practice and help her coach. We talk, communicate, and I follow her lead. He shows up and shows his ass for about 10 minutes, coaching the kids every time I open my mouth. Oh, boy, he wants to play games.

As the next game approaches, I talk to another group of parents. We agree that if he shows up to coach, we are both pulling our kids. I won't subject my child to another moment of this man's abuse. The other parents agree. I warm up the team because she is late again. We are ready to start lining up for the game when he shows up and calls them to him. I yell for my child as the other parents yell for theirs. I head to one board member as they head to another. The board members walk over to him and ask him to leave. He causes a huge scene, pulls his kid, and stomps off. We start the game with me as head coach immediately. No time to talk to the kids, no time to plan. Yeah, as one can imagine, that game didn't go so well. That's okay, ding dong the coach from hell is gone!

Starting Fresh. At the next practice, I let the kids know that I'm now the coach. They cheer. It's time to rebuild and start again. First, I have to build a foundation. I have to break the cycle of attacking each other. We are a team. We win as a team, we lose as a team. We run as a team, we have fun as a team. That was hard. They'd learned to finger point and attack each other. I had to break them of that bad habit. Positions, I had to teach them positions. With that, I had to teach them that all positions were important and that sometimes you had to play different positions. And, most importantly, I had to teach them to have fun. I had to teach them to laugh, smile, enjoy soccer. The next game, we come out as a new team. They play their positions, they talk to each other, they play soccer. So many people come up to me and thank me after the game. Yes, we lose, but we gain so much more that weekend.

The tournament weekend is upon us and we are feeling good. We're in this! The kids believe it, I believe it. We practice hard. I teach them basics, like throwing in and goal kicks. We're ready to show the world that we are here to stay. We lose the first game, but keep our heads up. We play hard our second game, and get a goal. How did we get the goal? Teamwork! Our midfielder passes to our forward and we score. Our goalie and defense keep the other team from scoring. WE WIN!!! I try not to cry as my kids coming running to me. We did it. Against all odds we win a game. No one else believed we would, but we did it.

We still get eliminated from the tournament, but that's okay. We already won. We overcame such a huge obstacle and we won. We had fun, learned a little about teamwork, and we won a game. I've never been so proud of a group of kids before as I am of this one. They never gave up and they didn't let that horrible coach win. Their determination was inspiring.

So, the reason I write this is because I felt like their story needed to be told. I was thanked by the parents, kids, other coaches, and referees. Thank you, they said, for taking your time to help those kids "What else could I do?" I say. "They needed me."

In truth, I needed them, too. They inspired me and helped me. They gave me a reason, a purpose, something to keep me busy during these hard times I'm going through. My family thought I was crazy for taking this team on with everything going on with me. I knew they were right, but I just had to help those kids. Those kids, who were unwilling to give up no matter what was thrown at them, inspired me. If they can be so brave and strong through their ordeal, I can be equally strong and brave through mine. And, most importantly, they gave me a sense of normalcy these last couple of weeks before my surgery. So, I thank them. Without them, I would have had the time to let the fear and doubt overwhelm me and win.


Thank YOU, Monkey Business. You've been a bright star during a dark night in my life. Thank you for sharing a piece of your sunshine with me. You helped me win another battle against cancer and I'll be forever grateful.