I can see you star shining down on me

I miss my grandmother every day. Seven years ago today, she earned her wings and left this world behind to join Big Nick and the gang for the perpetual happy hour in the sky. She was beautiful, resilient, funny, amazing, strong supportive, unconditionally loving, amazing soup maker, a true friend, and a role model. Even though the void she left 7 years ago never can be filled, I feel like I am still learning from her, especially in the last 2 and a half years. How much I wish I could have had the understanding of what she dealt with fighting cancer (not breast cancer, but that doesn’t matter) back then. I would love to tell her I really know what it felt like and have had her with me as I walk through my journey. I could have asked her more questions and I would be have been a better friend and support to her… But then again, I suspect that’s not what she wanted. When it came to her suffering, she was so private. And I am of course aware that she would never have wanted to see me go through cancer. I imagine that would be torturous as a grandparent. But I suspect we would have chuckled our way through it anyway. I always think of her saying to me “what else can you do but laugh?” Knowing her, I would guess she have preferred for me to just be a granddaughter, not a sister survivor. I think I did a pretty decent job of that. We both looked forward to our daily chats during my evening commute. It was a highlight of both of our days. I’d tell her about work, and she would tell me about the old bitties in her building. I knew her time was growing short when she didn’t have the energy to talk much anymore. That realization was one of the saddest days of my life. I knew then that my angel on earth was heaven bound. I was selfishly sad for me. I was losing my Gram who I loved so dearly. Who right until the last week of her life was a part of my daily world, even though I lived an hour and a half away. I am glad that I took the time in her remaining years to invest so much in our relationship. It is a blessing that I don’t feel like I wasted a minute. And when that last week came, I was with her. Not in her last moments, but in her last days, and she knew how much I loved her. I wonder if she knows how much I miss her. I tell her all the time. I hope she hears me. In the meantime, I remember her and smile. The costumes, the photo albums, the pasta Sundays, the laughs, the sewing, the road trips, laughing on our DC trip in the cab ride back to the hotel at Chris, the colored easter eggs, her sitting on the couch every Christmas morning waiting for us to get up, the old Italian music, dancing around being silly, visits with her and Aunt Jo and Nanny Grace, The old apartment in Secaucus, the lego building, “eye in the sky mildred”, the doot-dah-dos with her and Aunt Betty, the way she said certain words (bottle, seattle and Tylenol), the card that simply said “i’m proud of you kid” when I got my master’s degree, shopping for “tops”, the stories, all of it. I can still hear her laugh. So many amazing memories. I am blessed to have had a best friend like her. Just wanted to share a few lyrics that make me smile and think of her from “everywhere I go”… There are times when I look above and beyond There are times when I feel your love around me, baby I'll never forget, ma baby… Always been a true angel to me now above I can't wait for you to wrap your wings around me, baby Wrap them around me, baby… Everywhere I go, every smile I see I know you are there, smilin' back at me Dancin' in moonlight I know you are free 'Cuz I can see your star shinin' down on me…

Breast Cancer Awareness.

This is my third go-round for breast cancer awareness month. Each year, it has a little different feeling. This year, I wish I wasn’t as aware as I am, but as always, I’ll take the opportunity to share what I have learned through this experience. First things first, breast cancer is an oddly random disease. It’s sneaky and seems to pop up out of the blue. Especially in the early stages, it doesn’t make you feel like you are sick. Which is why there is so much preaching of early detection. Mammograms are probably the best way to catch the disease before it gets out of control. Unfortunately for me, they don’t start doing those screenings until the age of 40. Do not assume breast cancer cannot happen to you. It can happen to anyone. This is not meant to be a scare tactic, but rather just an opportunity for you to be aware of your body and any changes. It’s also a reminder to speak to your doctor and be proactive. Do not wait and say “it’s nothing” if you find something. Take care of it. Time is so important in the world of cancer. That is the general message that goes out to the majority of people regarding breast cancer awareness. Then there is the awareness of what it is like on the other side of the mammogram. For me, this will be a life-long journey now. I will walk with cancer. I will be in some form of treatment likely for the rest of my life. I am learning to live with that and not live looking too far ahead. I used to say we will do this or that when I am cancer free. The reality is, that may or may not happen. I have no idea. What I do know is that it has changed me in many ways. Aside from the physical stuff, I have changed emotionally as well. I try very hard to not let cancer interfere with my life, but truth be told, of course it does. It’s cancer. I have my good days and my bad days. Sometimes treatment is no big deal. Other days, it consumes me almost entirely. It’s hard to predict when and how that will happen. I am learning the pattern of my latest treatment to help get this under control and manage my side effects. I’m sure in time I will get it under control. So, what is a day in the life of a chronic breast cancer patient like? Well, to be fair, every day is different. Some days, it is no different than the day in the life of someone without cancer. I have my daily routine and do the best I can to maintain normalcy where possible. Other days, I am ruled by nausea, fatigue, weird finger issues. There are times when I feel so very loved and supported. And then there are times when I feel isolated from the rest of the world, like I am on the outside looking in, and that no one can understand what it is like to be in my world. Having this disease forces me to look at life differently. It sometimes limits me, which I hate. Other times, it shows me I am capable of doing so much more than I ever thought I could possibly do. Cancer has helped me to live for today and focus on not waiting for “someday” to come. I has made me wrestle with the idea of control. For a person who is very much used to being in control of my life, it is very difficult for me to surrender and know where the line is that defines what I am in control of and what is out of my hands. I struggle with this a lot. I want to believe that I can fix this by eating right, exercising, doing everything my doctor tells me and praying. But the truth is, while it might help with my overall wellness and allow me to withstand treatment better, I do not have control over this situation. But I will keep doing what I can, and learn to let go of the things I cannot control. The thing I want people to be most aware of is to enjoy your life. Do not take a single moment for granted. Life is meant to be lived and enjoyed. Don’t waste energy on petty details. Focus on what matters. And realize that your life can potentially change in an instant. And if it does, it doesn’t have to be the end of the world.

A mish mosh of stuff in my head

I'm awake, so why not write. Let's see, what's going on in my world? Well, I had to come off the study because although the treatment was working great in some areas, we found that a new spot cropped up. Sucks. But what can you do. I have had some time to adjust and am going used to this latest chapter. I am on a daily chemo drug. Learning the effects of a new med is always a challenge. Today, I experienced the oddest side effect. My son's school has fingerprint technology for the security code. Lucky me, my finger prints have officially been screwed up to the point of being unrecognizable. Delightful... Hmmm, I wonder where I can snag some jewels. Anywho, life goes on. Aside from the loss of finger prints I am learning to manage the side effects of this drug. I was disappointed to find that even though my hair grows back on this drug, I feel more "chemo-y". Nausea, fatigue, aches. The usual crap. Although I am noticing a decrease in pain in my known bone mets which is a good sign. That usually means they are taking a bit of a siesta. Always encouraging. Aside from that, it's funny how people view me and my situation differently. Some refuse to think about worst case scenario, which is cool because there is no need. Then there are others who look at me and give me these pitiful expressions like I'm going to drop right in front of them. That ain't happening. For example, working with my doctor, I have lost about 15 lbs to get more healthy. He is aware, and we have monitored it closely to ensure that it's being done in a healthy way. I'm pretty pleased because I needed to lose the weight. I was too heavy.yesterday a coworker looked at me with the sad face and said "honey you look like you are losing weight. I'm concerned." While I appreciate the concern, I'm fine. And trust me, if I want to I can easily gain weight. Give me some pasta on the weekend and it's game on. We tested it. Gaining weight is not a problem for me. It's not the cancer that is causing me to lose weight, it's its the 10 servings of fruits and vegetables, thank you very much. Sigh. Being the girl with cancer is weird. I answer a lot of questions that I don't mind answering but wish I didn't have to. I face a lot of things that I don't wish on anyone. A dear friend said to me how brave I was to get the tattoo. I chuckled and said that it a nothing compared to the other crap I have faced... And I meant every word of that. I'd get a whole crazy sleeve done if it meant no more cancer. But alas, it's not that simple. Anyway, that's just a snippet in the day of the life of th girl who has cancer but doesn't want to be defined by it. On one final note, Steve and I have declared our boat a cancer free zone... No worries other than finding our markers and figuring out how to park the darn thing. Life is good. And life isn't cancer.

Always learning, evolving, growing

I am really realizing recently that life doesn’t have to be so serious and stressful. Granted, we have responsibilities that need to be tended to, so we can’t go about life living frivolously. However, there is so much about life to enjoy. Enjoying life reduces stress which can promote a stronger immune system. I don’t get too deep into stressful topics or debates if I can help it because it’s not worth the negative energy. I try to really focus on what is an important use of my energy, and ignore the ones that are not helpful, to not sweat the small stuff, so to speak. I find that for me, the mental shift is happening from fighting to healing. There are rumblings that stress promotes cancer. Looking back on my history, I would say this makes a heck of a lot of sense. We all know that high levels of stress can lead to being run down. It’s not uncommon for someone to get a cold after a busy season at work, or to get ill after caring for a loved one, etc. I think part of the key here is learning to manage the stress and keep it in check. Just like anything else, moderation is the key. A certain amount of stress is ok, you don’t want to be totally zoned out and lacksadaisical about everything, but you don’t want to be a bundle of nerves either. It’s about finding the appropriate balance for self-care. As someone recently described it to me, it’s like walking on a tight rope. The ironic part is, cancer, especially stage IV, tends to create more stress just by its very nature. In many ways, it’s a vicious cycle. You stress, you get sick, and then you stress about being sick, and that doesn’t help anyone! So, for me, I spend a lot of time working on this, trying to keep it in check. This is an ongoing task for me but something I work on regularly. I need to take inventory and learn where my stressors are, which ones are worth it, which ones are not, and what to do about them. My recent changes in treatment, etc. have caused me to look at things a little differently. Yes, it is true that remission is the goal. How realistic that is would be hard to say. However, I always talked about “fighting cancer” and “beating cancer” and I think for me, I am starting to see this as maybe not the best approach. I think the focus needs to be more on healing from cancer. More of a focus on getting well then fighting. That might sound odd, but it’s just a more positive perspective I think. It’s a balancing act. I am still going to treat the cancer aggressively, but my hope is to continue to help my body be a healthier environment so that the cancer can’t thrive. I am hoping that this integrative approach will help bolster my outcome and help my treatment to be more effective.

Insecurities

It is interesting how the mind plays games on me. In my current chemo regimen, I go every two months for scans. This week is that time again. As I have learned, once the scans are scheduled, the worries start. What will the scans show? Did I do everything that I could have to help the results be favorable? Is the treatment working? What is that pain I feel? Is it cancer? From what I have learned, that is highly normal. However, the interesting part is this, the insecurities don't seem to stop t cancer. The doubts surrounding other parts creep in. Am I doing well enough at work? Am I a good enough wife and mother? Am I going to screw up this presentation I have to give today? Is my job secure? How ugly am I with no hair or eyelashes? Will I ever look like myself again? Am I a good enough friend, cousin, daughter, sister? Do I have enough faith? Oddly enough, these concerns are no as intense as they are with scan weeks. Scan weeks are like dementors. They prey on fears and negativity and suck on your soul. Friday will come quickly and then time will stand still until the results are back. In the meantime, I will do my best to get through with my head above water...

Stuff I love

I realized something interesting today. I love my life. I love so many things about it. The wonderful companionship and love in my marriage. The joy of my child. The beauty of where I live. The smell of the ocean air. The sunshine that warms me. The career I worked so hard to attain. The way my van drives. The sound of seagulls. My wonderful, amazing parents. My adorable nieces and nephews. The sound of waves crashing. My brothers go have taught me much. The relationship I have with all of my doctors. My truly unbelievable friends. My life. It warms my heart. The only thing it don't like about it is the threat that it can be Away from me. Which brings me to one more thing I love. The fact that I am a stubborn pain in the ass who won't quit until she gets what she wants...

The shadows

I spend a lot of time focusing on the positive and the blessings cancer brings. Truth be told, I'd be lying if I said that there weren't hard times. There are. There are times of anger, guilt, fear. There are times of sadness, jealousy and self-pity. There are times of feeling overwhelmed, burnt out, and just plain exhausted. I work very hard to keep them check, but they bubble up time and again. Yesterday, I was reminded of the quote "people cry not because they are weak but because they are strong for too long." This was me yesterday. I try very hard to act like I don't have cancer. I try very hard to not let it interfere with life, but the reality is that there is only so much I can do. It's very easy for me to forget my reality. Every day, I am fighting a life threatening disease for those I love. Talk about self induced pressure. And as much as the chemo is manageable, side effects exist. Neuropathy, severe headaches, digestive issues, sinus problems, oh and of course the baldness. I think the loss of eyelashes and eye brows bother me the most because without makeup I truly look sick. My reality reveals itself. The reality that I try so hard to keep hidden. Am I doing myself justice? I don't know. On one hand, it's nice to know that I give hope to others and myself via my appearance, but there are times when perhaps it hides the gravity of my situation. Every two months, my heart is gripped with fear not knowing if I am better or worse. The anticipation of upcoming scans is hell. It's like purgatory not knowing if elation or anguish waits on the other side of the phone call. And in the two months between scans, there is chemo itself. Generally, it hasn't been too bad, but it does catch up with me. The migraines, dizziness and fatigue do hit me. The aches and pains come and go. There are times when i want to do more than I am able to. That is frustrating to me. Knowing I sometimes can't be the mommy I want to be breaks my heart. My four year old knows too much about doctors and sickness for anyone his age. He has fears and insecurities that no child should have to experience. Granted, he doesn't known the seriousness of my situation, but he knows his mommy isn't normal and that makes me sad. I do my best to keep things as normal as possible and have wonderful support of people who,are willing to step in and help him have a normal childhood. That is a blessing. But there are times why it shows. Just yesterday, he knew I was crying and he was blowing me kisses from the back seat of the car to try to cheer me up. While it is wonderful that he is so compassionate, I wish he didn't have to be. But this Is my life. This is real. Sometimes things are good, and sometimes they are just plain hard.