Thursday, March 19, 2015

The Aftermath

The storm is over. The world keeps spinning. The people keep living. Life goes on. You survived. You should be rejoicing. You're alive. It's over. All is good. Right?

Once the hurricane passes, it's time to go outside, spin around, and sing the joys of being happy and being alive. You survived. Even through all of the destruction and flooding, you didn't drown. You made it. The house may be gone but the foundation is there. You will rebuild and be stronger than before.

Is that reality? No. In reality it's so much more complicated. As time goes by, everyone else (especially those who didn't actually lose everything) goes back to a normal life. The hurricane becomes a thing of the past...a distant memory. They are the lucky ones. They aren't scarred from the hurricane. It didn't flood their house. They didn't have to climb out of the wreckage. It's easy for them to put it all behind them. The storm becomes a blip in their world. It's easy to forget and to move on with their lives. But, for you, not so much.

Emotionally, you've been damaged. Your foundation starts showing cracks. Will you ever rebuild? You start trying to build the framework, but where's the money to cover the costs? Insurance doesn't pay their portion. They find a way around it and you are drowning in debt trying to rebuild. So, the framework just sits there. Smaller storms keep hitting. The framework comes crashing down. You're back down to your foundation. And, it seems like the cracks are bigger. You keep trying and trying to rebuild, but it just doesn't happen. You're stuck. You're homeless. You're all alone. You and your cracked foundation.

Around you the world is moving. Everyone else has recovered. It's just a story for them. It's a reality for you. You're scared. What if another huge storm hits? How will you survive? You find yourself crying. You find yourself ready to give up. How do you rebuild? Everything is damaged. You don't have the strength to put up the framework. You feel like you are still drowning. Did you really make it out of the storm? You start wondering how everyone around you can just go on so easily. Why aren't they as affected by the hurricane as you are? They just don't understand. They haven't lived it. They haven't lost their security, their comfort, their life. They get to do everything they want. They are able to be active and live life to the fullest.'re stuck trying to rebuild. It feels impossible. There's no wood for your framework. There's no easy fix to fill in the cracks of your foundation.

Eventually you get used to being in the dark. It becomes a way of life. Will it ever be light again? What was the point of surviving?'s a dream. Is it even attainable? How do you get past the fact that everyone around you moved on with their lives? How do you get back to normal? How do you ever live again?

Monday, August 25, 2014

And The Beat Goes On...

Wow, I was just reading my last blog and realized that I haven't updated everyone. I think part of this is because I'm constantly updating on Facebook so I know that most of my friends and family have kept up with the happening of Steenie. But, I do also know that I have a few extra readers out there and I'm sorry for being so late with this. I actually have a lot to share so this may be a long one.

First, let me say that the Colonoscopy results came back normal. Well, I have internal hemorrhoids, but who wouldn't after taking that nasty prep medication? I mean, that has to be the worst experience of my life. Miserable...just miserable But, it's good to know that there were no tumors. My doctor also re-stretched my esophagus during another EGD. The biggest problem with my colonoscopy was getting the IV put in my arm. Well, they didn't actually get it into my arm. After three painful tries, they decided to access my port. Of course, even that couldn't go over easily. See, I need an extra long needle. Normal needles are 1 inch. Steenie needles are 1.5 inches. My port is in deep under my skin. Such is the luck of me. After all of that worrying, that's all there is. Thank goodness.

In June I went to see my general doctor and have myself tested officially for diabetes. She expected me to be in pre-diabetes because of the family history of diabetes and because of the steroids I had to take during chemo. Unfortunately, the test came back as I expected. I officially have Diabetes. So, I went to a diabetes class in July and I'm testing my blood sugar often. It's a bit of pain and I'm not very good at this whole thing yet, but I'm hoping to get a handle on this soon. Trying to eliminate everything from my diet is really the hardest. No milk, no pineapple (see below), low sugar, etc. I really do wish I could catch a break.

Right after this, I had a bit of a bad reaction to pineapple. Okay, apparently is was a huge allergic reaction to pineapple. I was sitting in my chair, enjoying pineapple when my mouth started to itch. Then, it started to burn. After that, my throat started burning. It felt like my mouth, tongue, and throat were swelling. Yeah, I thought it was just from eating too many pineapples because this was the first time I'd ever had more than a piece or two. So, I took a Benadryl (it was to swallow), read about pineapple allergies (They are extremely rare.), and convinced myself that I was just freaking myself out and that it was nothing. No, it wasn't nothing. My allergist said that I'm lucky to be alive and that I was a fool for not going to the ER. Apparently, I was in the beginning stages of Anaphylactic Shock. Oops. So, now I get to carry an EpiPen and have to eliminate yet another thing from my diet. It's confirmed...I am extremely allergic to pineapple and kiwi. Guess I should be happy that I'm alive.

Now for a positive...I also made a trip to NH this summer in June. My dad flew down and rode back with us. Logan and I had a great trip and I finally got to show one of my kids how I spent my summers as a kid. Logan got to see mountains, the Atlantic Ocean, waterfalls, mountain springs, and so on. It was wonderful. We were able to visit my aunt and play a lot of yahtzee. Logan met his great-grandmother. It was a whirlwind trip. The best part is that Logan has talked about it non-stop and can't wait to go back next year. He even has Tristen pumped up. And, he wants to stay longer. They turned thirteen a couple of weeks ago and I know how precious this time with the is. It won't be much longer before they don't want to do anything with family. I'm so excited. And, this vacation was something I needed so much. This break from life. Thanks Dad and Elsye. This trip meant the world to me.

Unfortunately, I had to come back to the real world. And, my real world involves medical problems. Always. I started feeling bad the last week of July. It was a cold, but it lingered. Usually, I get Bronchitis every August. I've had it for the last four years in August. So, I went to the doctor and caught it early so I was told I only had an upper respiratory infection. Because my doctor knows me so well, she put me on an antibiotic, Omnicef. It's the first time I've taken that particular medication. In hind sight, we should have known that was a mistake. About three days into taking the medicine, I started bleeding during bowel movements. I, of course, immediately went in to see my doctor. Yep, you guessed it. I had a bad reaction to the medication. It caused my colon to become inflamed and caused my hemorrhoids to rupture. I'm very fortunate that it didn't cause more damage to my colon. Now, I'm taking a suppository to help with all of that. Seriously? 

While I was at the doctor's for the respiratory infection, I asked her to run a test. I tell her I'm pretty sure I'm ovulating and that I have cysts. Why should I not be ovulating? Well, I'm taking medication to stop my body from producing estrogen. At least, I thought that's what Tamoxifen did at the time. I still don't really get it. The tamoxifen creates an "anti-estrogen" that binds with the cells that estrogen normally would...I don't know. Anyway, she did a blood test and I got the results when I went back because of my other problems. Yes, I'm ovulating. Despite the fact that my OB/GYN told me I was post-menopausal, I'm ovulating. What?!?!?! Why, oh why, can't one doctor just tell my I'm a hypochondriac? I mean, you can't make this stuff up. She told me to make an appoint with my OBGYN. Seriously, I'm at a higher risk for ovarian cancer. I'm ER+ and PR+ which means that my cancer feeds off of estrogen and progesterone. The last thing I want to be doing is producing more.

So, last week, I saw my OBGYN. I showed him my test result and he said that something had to have "kickstarted" my ovaries into action. He did an exam and had me get an ultrasound because of the pain. Haha, I guess I laugh to keep from crying. My left ovary is enlarged to 9.4 cm. That's the size of a grapefruit. It has multiple cysts with septations on it with the largest measuring 4.3 cm (apple sized). My right ovary has one cyst on it. The technician said she'd never seen an ovary like this. It was huge. She also said that it looked like I was going through fertility treatment. What?!?! The doctor said that this might make my decision to remove my ovaries (see below) an easier decision. Basically, I have to have surgery. He needs to look at my ovary and figure out why it's enlarged. He's concerned about a possible Ovarian Torsion. And, of course, the septations are a concern (more likely to be cancerous). Under normal circumstances, after looking at it he would make a decision whether the ovary can be fixed or if it needs to be removed. Given my circumstances along with the extremely enlarged problem, he's about 98% sure that he will have to remove the left ovary no matter what. By the way, surgery is scheduled for Thursday, August 28th. He would have scheduled it immediately, but wanted me to see my Oncologist beforehand. So, again, I'm faced with the "c" word and I have to make decisions. Again, I'm in pain. Again, I have to have surgery. Again, I have to worry. 

Today, August 25th, I see my Oncologist. Boy, do I have a lot of questions and problems for him during this first post-treatment (again see below) follow-up. I have to ask him about Tamoxifen and the possible effects it's had on me. During my research, I read that some doctors use it as a fertility drug. Next, I'm I supposed to be? Also, I have to have surgery and I believe that I need both ovaries removed. Hello, you told me that I didn't need to have my ovaries removed because the chemo would "destroy" them. Pssh, if any one's ovaries could withstand that and pull me from post-menopausal to pre-menopausal, it would be mine. Why does my chest hurt? None of my other doctors know why. I'm sure there are more questions, but the ovaries have pretty much trumped any other concern I had. Well, we'll find out today what his opinion is. I know my answer though...the ovaries have to go. I can't worry about Ovarian Cancer for the rest of my life. 

Now, I've kind of been avoiding posting this part. It's really good news. It's the news that everyone has been waiting for...

Why haven't I shared this? This is the question everyone has been asking me. Well, it's simple. I didn't want to jinx myself. I thought maybe if I didn't post this. Just maybe if I quit talking about it. Maybe, just maybe the other shoe wouldn't drop. Well, it's more than shoe. So many shoes have dropped that my closet looks like Imelda Marcos' closet. But, alas, that clearly didn't work. And, since the shoe has dropped, I've realized that I can't just worry. I have to enjoy the victories. So, without further ado...


As many of you know, I finished my last chemo treatment on July 3rd. Cancer cells have not been detected in my blood since my surgery. Some may consider that day to be my remission day, but I count it from the end of treat. It's the day I rang the bell. It's the day I rang the bell for me, for my grandmother who passed from cancer after a long battle, for every person who wasn't able to ring the bell. It was a very emotional day. I still get teary-eyed thinking about it. And, even though I will never consider myself cancer-free or cured because I know the fight doesn't end here (see above for examples), it was one of the best moments of my life. I had a Remission Cookout Celebration. It was perfect. I'd like to share my triumph with you and thank you for sharing this journey. You all are a part of it. And, even though it will continue, I'm so grateful and happy about this huge victory. 

Tuesday, March 25, 2014

Happy? Anniversary

Today marks the first anniversary of the self-discovery of the tumor that rocked my world. One year ago today I found a lump while itching my breast because of allergies. One year ago I became a breast cancer fighter…

Sometimes it's easy to become complacent with life. It goes on whether you are ready or not. You fall into a routine and life just keeps moving. You'd think that such a big event…Breast Cancer…would be so life-altering that you wouldn't become complacent. You wouldn't take life for granted. You wouldn't forget that you're a fighter. You wouldn't forget that this is a lifetime event. Well, I did.

This year has started out about as normal as you can get in my life. By the end of January I have my first bout with Bronchitis. It's nothing to really write about as it happens so often to me each year. By the beginning of February I'm already into my second epidural trying to treat the numbness in my leg that is associated with a pinched nerve. No big deal. The norm. So, I find myself having nothing to say about anything particular on here and don't write. As such, I leave everyone wondering what's going on with me. I guess you could say that I had my rose-colored lens on for awhile. I mean, I have my chemo down to a science. Go to chemo. Go eat at Olive Garden. Become tired and bitchy for a few days. Then, rinse and repeat. Of course, I was only fooling myself. So, without further ado, here's my latest and greatest…

On February 18th, I head in to meet my new Gastroenterologist. My last one retired and over the last few months I find myself with extreme GERD/Acid Reflux. My medication isn't working for me anymore. I double up on it and still no dent in the pain and discomfort. He lets me know that he believes it's a little more serious than expected. He believes that I also have Bile Reflux from my liver. What? Bile Reflux? Huh? So, he changes my meds, schedules a scope on my esophagus and stomach. He also runs a crap ton of tests. Routine, right? 

Blood work for my liver comes back abnormal. So, I return a couple of days later for more testing. While I'm getting blood drawn I ask the technician the purpose of the new test. She's hesitant with her answer and finally replies in a technical voice that the test is a Tumor Marker Test but that she doesn't know the reason why. Tumor Marker? I know what that is, you aren't fooling me with the technical term. Cancer? That's on the table? What? Is my imagination back? He also schedules an ultrasound on my liver. Hmm, I thought he said that an ultrasound wasn't necessary. So, when the nurse calls me to schedule more tests I ask if he's specifically testing for liver cancer. After a very long hold, she comes back and tells me that it is indeed to test for cancer. Seriously? Wouldn't my oncologist have detected one with my monthly tumor marker test? Ok, imagination, I'm not up for these games again. After much research I learn that there are different Tumor Marker Tests for different cancers. So, yes, my oncologist does a test for breast tumors, but not the rest of the body. Oh, great. Another scare. Fortunately, the results come back normal. I do not have a liver tumor.

On February 26th, I go in for my EGD (Esophagogastroduodenoscopy) with my mom-in-law. After the procedure, the doctor tells her that he stretched my esophagus to help with the small swallowing problem I'm having. It feels like things are stuck in my throat quite often. He also informs her that I have a Hiatal Hernia and a red stomach. Maybe that's why my upper abdomen hurts? He removes some polyps to biopsy and I get the report not too long after. The red stomach is Chronic Gastritis. No tumors found. Great. I didn't know we were looking for tumors. I'm kind of getting sick of that word.

On February 28th, I have my abdominal ultrasound shortly after I finish my latest round of chemo. Side note, it's not fun to go without food the morning of chemo. The technician measures, photographs, etc. my liver. I'm starting to feel a little worried again. Am I imagining things? Is she taking an extra long time? Please don't let it be anything serious. The results come in a few days later and just like everything in my life, it's not a simple answer. The ultrasound confirms that I do not have liver cancer. Yes! But, and there's always a but, I do have a fatty liver. Oh, man. Exhale. Fatty Liver Disease can be caused by many things, many of which I currently have…like obesity, diabetes, Sjogren's, certain medications (that I'm on), to name a few. And, while this isn't an immediate life-threatening illness like liver cancer would have been, it's still serious and is something I have to get in control. I have a lot of work to do to push this disease into remission.

On March 19th, I go to my follow-up visit with my gastroenterologist. I bring lots and lots of questions with me. Will my hernia repair itself over time? Why am I having more trouble swallowing after the stretched esophagus? Chronic Gastritis? Am I worried? My medication for the bile reflux is leaving me nauseous and with a stomach ache. What gives? Fatty liver? Yikes! What do I do? Oh, by the way, what's this line on the CT scan I had last year for my oncologist? I know it has something to do with my intestines. To say I overwhelmed him (This was just a sample of my questions.) is an understatement. So, he addresses everyone one subject at a time. Chronic Gastritis - very mild and you are already taking meds for it. Good to know. Hernia - it's common and shouldn't bother you. Eat bland things. Boo! Bland foods suck. Fatty Liver Disease - Change your diet and lose weight. It's not serious yet. Ok, as soon as I can figure out what I CAN eat, I'll get on this. It's do-able. Having trouble swallowing - Well, this is not the usual. I've only known 2-3 people who had trouble after the stretching and they had neurological problems. This is not the usual. Hey, doc? NOTHING about me is usual. Ever! Nice to meet you. Let's set you up with a Barium Study and see if you are having problems with your muscles or nerves. What am I not having problems with, sheesh. CT Scan results - Deep Breath (maybe this needs it's own paragraph.)

As he reads the one line from an old CT Scan result page, I get a sense of deja vu. Did his expression change or is it my imagination? He exhales deeply and asks me if he ignored this the last visit. I assure him that this is the first time I'm showing him because it was something that I just remembered from last year. I just didn't understand the wording and was hoping he could tell me what it meant. "This changes things. This is serious. Okay, (worried look on his face) we're going to have to do a colonoscopy. This line means that you could have a tumor in your intestines. Something is blocking the uptake. Now, I'm probably overreacting and it's nothing to worry about." Yeah, that's what your face is showing. Holy crap, another tumor scare. How much more can I take? Will it never end? Seriously, Imagination, I need you. I don't want to cry again, I don't want to cry again. ***exhale*** "I just think it's better to be overly cautious because you have cancer than to sit here wondering. Okay, I can handle that. Overly cautious because I already have cancer. It doesn't mean anything.

So, today, March 25th, on the one year anniversary of saving my own life by feeling a tumor, I am going in for my Barium Swallow Study. The weight of it all feels so heavy and I can't help but to sit here and think of the irony of going through all of the motions all over again one year later. I'll go in today, eat foods starting with liquids and ending with solids, while they take X-rays of my esophagus. They will be checking my muscle function, my nerve function, as well as looking for signs of tumors, complications from the hernia, etc. I guess my one and a half months of ignorant bliss is over. This really is a lifetime battle. I will always have cancer. I will always have scares. I will always be a cancer fighter. I will never forget again and I am making it my mission to make sure no one else forgets the strain, fear, and loss that cancer causes for those struggling with it and for those with loved ones diagnosed with it.

On April 1st, I'll go into the hospital for my Colonoscopy to check for tumors. He'll also do another EGD to stretch the esophagus and check it out. Again, in another bit of irony, this will be one year to the day that I had my diagnostic mammogram and ultrasound done. Is it a coincidence or is it foreshadowing? My Instincts and Imagination are screaming at me. Well, maybe just my imagination. I mean, it really is doubtful that I have a tumor that hasn't been detected. So, I'll be the first to admit that the feeling in my gut may just be a little off and a little on edge.

Then again, is anything ever simple with me? We'll see.

Tuesday, December 31, 2013

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!

Saturday, November 23, 2013

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.

Saturday, September 28, 2013

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 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 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.

Friday, September 27, 2013

Sometimes You Have to Let It All Out


*Story to follow tomorrow. I AM okay.