12 days of chemo

As some of you may know, my family has a tradition of singing the 12 days of Christmas at some point over the holiday. I am pretty sure that it started years ago in Carlstadt at Carol's house. It's been ongoing for years, and brings lots of fun memories. Like the time Grandma Carrie (God love her) kept forgetting what day she had and would just giggle when it came her turn. A new generation of the family continues the tradition and now my nieces and nephews have since joined in the fun. We have taken to modifying the lyrics to add to the holiday sillies. Having had chemo today, an idea struck me... I am happy to share with you the 12 days of chemo. I hope it brings you a smile, especially to my survivors sisters. As the song can be quite long, we will just start from the 12th day and work backwards. On the 12th day of chemo, my doctor gave to me: 12 counts of blood cells 11 nurses cursing 10 ports to access 9 checks of vitals 8 pills of zofran 7 veins a-warming 6 wigs a-spinning 5 siiiiiideeeee efffeeeecccctttss 4 combo drugs 3 sets of scans 2 perky boobs and a benedryl iv naaaaapppppp

Stuff I have learned

This journey is an ever-evolving educational experience. I thought I knew so much about life, but I keep learning more. I am sure that there is much more I haven't even come across yet. First off, I have learned that just because you might have a horribly crappy day doesn't mean that the next day can't be decent. I've learned that even if you don't get your way, you can still smile and have fun. I learned that even when you want to crawl under the covers, the best thing to do is to keep walking forward. Sometimes, you might be able to run. Other times, you might just limp along. But you have to keep going. I have learned that sometimes the only way to gain true perspective is to go through painful experiences that open your mind and your eyes. I have learned that the squeaky wheel does get the oil, but it gets the better quality oil if it squeaks politely. I have learned that most people are immeasurably kind when they put their minds or rather their hearts to it. And when they are not, it is usually not intentional. It's so important to keep hope. Keep positive. The reality is that there is no crystal ball. So while things might not be what I want them to be at the moment, that doesn't mean they can't improve. I have learned that some people in worse situations than me have improved and done well. Why not me? I can't think of a reason. So I will keep moving forward. and trying to enjoy as much as I can until the day when I have the joy in my heart knowing things are better.

Giving thanks...

I had hoped to wake up this morning to have a different set of circumstnaces to be grateful for, but alas, I don't make those decisions. The decisions I make are what I do with the situations presented to me. So here goes. Today, I am grateful for resilience. The ability to catch my breath again after the wind has been knocked out of me time and time again. Knowing that hard times come, but the intensity of the emotions surrounding them can fade in time. Life can look and feel a little bit more normal then. I am grateful for options, that as much as I could see the pain and sadness in my doctor's eyes, not all was lost and he could offer me more. I hate bad news, but if it is followed by a plan, then I can handle it. I am grateful for love. It manifests in so many ways: through outpouring of support, through quiet tears, through a big tight hug. It is the devotion of a husband who feels like life just isn't fair, but he lives it with me and makes the best anyway. It's in the eyes and smile of a child who has no idea what is happening, but just knows how to love so deeply. It's in the hearts of the parents that keep getting broken and put back together with crazy glue and hope. I am grateful for holidays. It gives me a chance to be with the family I love and focus on something other than this. I am also grateful that I don't play football because my family is crazy, and cancer or not, they would break my fingers to pry the ball from my hand if I played. They show no mercy ;-) I am grateful for faith. It helps me to believe there must be some rhyme or reason to this craziness, especially when I can't see or understand it myself. It pushes me forward and keeps me trying harder every day. It helps me believe that if I don't give up, amazing things will still happen. And it helps me know that I am never, ever alone.

what is your problem??

Seriously cancer, what is your problem with me? I don't get what your issue is. Are you pissed that I keep vowing to beat you? You are one fierce competitor, I'll give you that. The crap you pulled on me this week was pretty obnoxious. You play dirty. I need you to understand something though. I am not planning on quitting. I just don't work that way. I am pretty persistent. I just think though it is not right what you are trying to do. Do you realize how many people you are hurting? Please leave me alone so my loved ones stop having heart ache... And to be a little selfish, I'm really over you and your drama. Cut the crap. Suck up the infusion and die. Leave me the hell alone.

Happy Anniversary!

“I, Nicole, take you, Steve, to be my husband. I promise to be true to you in good times and in bad, in sickness and in health. I will love you and honor you all the days of my life.” 9 eventful years have gone by since I spoke those words, and we still try to live them every day: the good times and bad, in sickness and in health. Granted, we have had a lot of ups and downs and have had to put our vows to the test more than most do in the first 9 years, but we have had some amazing times too. Nine years went so fast, but when I stop and think of everything we have seen and done, we have crammed in some pretty impressive stuff. Here’s the happy recap: • 5 cruises • 4 Disney trips • 1 trip to Aruba and 1 to Puerto Rico with wonderful friends • 1 amazing, beautiful, stubborn child • 1 natural disaster • 3 mailing addresses • 1 mortgage • 7 surgeries (and no, they were not all mine) • Hundreds of thousands of miles racked up on vehicles • 6 vehicles • 3 new godchildren • 1 dream come true in “the Mr Beaumont” • 1 Master’s degree • 2 t-ball seasons • 14 weddings which we attended as guests • 10 baptisms • 7 job changes • 1,000,000,000 laughs • 999,999,999 tears • 1 shared anniversary with amazing friends • 2 wedding solos sung by Steve • 1 anniversary spent in the emergency room watching Harry Potter • 4 Easter egg hunts at the farm • 3 speeches about cancer • 1 big fierce, ongoing, team-effort battle against cancer • Hundreds of hidden Mickeys • 2 best friends, life partners • One love Thank you Steve…. For all that you are, but for mostly, being my home no matter where the roads may take us. And to our wise-ass best man, NO these were not all up north! ;-p

Farewell pink-tober.

You might notice there was less posting during this October than the previous two. This was somewhat intentional. This year was a little different for me. I still enjoyed seeing the tributes and love to the disease that I live with each day. It does warm my heart to see kids wearing pink on the football field and baseball diamond. I do love seeing the NFL go all out for us pink sisters. There is something special about seeing big tough guys (including those in my family) wearing pink to honor me and the others. That is special, and there is nothing that can change that. However, for me this year, rather than jump in every sea of pink out there, I took a different approach. My strategy for honoring breast cancer awareness month was to just live my life. Live it simply on some days and live it large and loud on others. I want to share with you today what I (a girl with advanced breast cancer, with several organs affected, going through active treatment) does. I went to baseball games with my son because I can. I worked every day. I celebrated my Godson’s and my father’s birthday (along with many other family members. Apparently the fall is birthing season for Briamontes). I was thrilled and honored to learn that I have my third Godchild on the way. I planned my son’s 5th birthday for November and planned a vacation. I traveled for work for the first time in months. I took pictures of 2.5 special people on the beach. I held my beautiful baby nephew and watched him smile. I snuggled with my boy. I traveled and ran around like a nut with my husband. I went to a wedding with friends and laughed a lot. I uttered the words “I am on chemo and am drunk, I cannot be held accountable for what comes out of my mouth”. I laughed a lot. And I cried some, but less than in other months. I worked on my faith and relationship with God. I went to 2 appointments with my oncologist. I took 33 doses of chemo. I grew my hair back. I got one shot of x-geva (the bone boosting drug to prevent skeletal complications from the cancer). I managed nausea with Zofran and fried rice. I found out what hand and foot syndrome is. I learned I don’t like it but it is temporary and it passes… I got tired sometimes, like mind-numbing, cannot function or stand up any second longer tired. I did not walk in any of the cancer walks this year. I cheered, smiled and supported when I saw my friends who did support the cause. I cheered on my pink sisters in the battles and successes. I spoke in front of 400 people to enlighten them on the amazing organization called the cancer support community. I wore a sexy dress. I proudly work an obnoxious pink wig with my costume for Halloween. I was published in Coping with Cancer Magazine. I sold more copies of my book which means I helped other women. I heard from women who read the book and got great comfort out of it. Here’s the bottom line of how I celebrated Pink-tober…. I lived my life! Cancer be damned. Live Love and Laugh…

All these other things besides one

I thought it would be a good time to revisit my very first blog post, “all these things plus one”. During the course of my two and a half year dance with cancer, I have discovered even more cool things about me. So here goes. I am a woman who is not content to sit on my laurels and let others determine my destiny. I am a pretty darn good mother, who is raising a compassionate, bright, funny, healthy and happy child with my husband. I am biased. I am still a woman of faith, who refuses to walk away from my beliefs despite the challenges I have faced. I am proud of my accomplishments, but still suffer with moments of pretty intense insecurity. I am an author. I am a public speaker. I love to read a good novel. I wish I could write one on the caliber of some of the enjoyable works I have read. I am the 2013 honorary Mets bat girl. I love making other people feel good about themselves. I am an HR Manager. I am a pretty decent mediator in the professional setting. I am a calming influence in the office, even if not so much at home. I am dedicated to making the work place better because I am in it. I am not a fan of chemo-induced nausea, but am a fan of fried rice as being better than Zofran. I am ok with wearing wigs, hats and bandanas as need be. I do miss my long straight hair. I am a baseball momma. I am a fierce fighter, and have no hesitation taking on whatever treatment throws my way. I am relentless. I am willing to try whatever doctors suggest if it will help. I have a lot to live for and do feel that I have an obligation to do my part to make that happen. I get angry when I see women being abused or mistreated, even if it’s only on tv. I think every woman should know her worth, her strength and her beauty. I think that women should be treated with respect and not like slaves. I think men who treat women as equals are awesome and men who look down on or degrade women should be kicked in the nuts, and knocked down a peg. I feel that men who abuse woman are scum and should be subjected to the same type of torture, whether it be physical or emotional. I believe in treating others as you would want them to treat you. I love the people in my life and do whatever I can to support them. While my treatments limit me sometimes, I still am wanting to do for others and I get really cranky when I can’t. I am pretty tenacious when I set my mind to a goal. I am not o to give up. I am resilient. I have no patience for people who throw pity parties for attention and most especially when they don’t try to better their own circumstances. This is me. Cancer or not…

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.

Accomplishing Goals

My goals in recent months have been focused on doing whatever I can to be well and give myself the best fighting chance. Now that almost 6 months has gone by, I thought it would be a good point to go back and assess what I wanted to accomplish. Here goes. Chemo mini goals: • The first goal was to tolerate treatment well enough to know that I could continue with the clinical study - check • The second goal was to learn how to accept that this is a permanent part of my life at least for the foreseeable future – check • The third goal was to make lifestyle changes to support my wellness - check • The fourth goal was to survive the first two months without progression and be able to continue on treatment – check • The fifth goal was to be well enough to enjoy my Lourdes experience – check, check, double check. • The sixth goal was to modify my diet to boost my immune system to help me tolerate chemo well - check • The seventh goal is to get through the second set of scans with no progression – check (and a bonus check for tumor regression) • The eight goal was to get through the next round of scans with no progression, which would amount to 6 months of successful treatment (this was a number I had in the back of my mind from the beginning as a starter goal) – working on earning that check. Scans are next Friday and Sunday. Prayers gratefully accepted. I am proud of what has transpired in the past 6 months. I am grateful that it has been a positive experience all things considered. I would like to continue to strive towards goals. My ultimate goal of course is to one day hear the words “the study shows no evidence of hypermetabolic activity”. I will do a cartwheel when that happens. And I will video take it for everyone to get a good chuckle at my lack of coordination, and at the possibility of my wig falling off! In the meantime, I will continue to set mini goals for myself which will hopefully add up to me beating cancer, or at least me getting it to a point where it is less threatening. God is good… I am grateful for the opportunity to be treated and to achieve each little goal one at a time. Also, I would like to request additional prayers for a friend of mine who has been having some complications and goes to the breast surgeon tomorrow to see what is happening. Please pray that all is ok.

Winning with cancer

I have heard so much about beating cancer. It has been something I have been striving for for more than two years now. It's the dream of anyone who hears those dreaded words. No one wants to lose that battle. What an awful thought. But then it occurred to me, tumor burden aside, I have already beaten cancer. No, that is not a medically confirmed statement. But it is my truth. Let me explain. Cancer wages a war on two fronts: the physical battlefield and the emotional one. The physical war still rages on in me. And hopefully, my troops are on the move and continue to kick some ass. But that remains to be seen. The emotional war is the one I am winning. I am not depressed. I am not crippled by anxiety. I am not buried in fear. Instead, I am happy. I am hopeful. And I am living my life. I am not curled up in a hole somewhere waiting for the storm to pass. I am dancing in the rain. Life goes on and I am a part of it! Take that cancer, you cowardly bastard! I am working. I am living life with my husband. And I am raising my son. My faith in God is as strong as it has always been. In fact, in someways, my life has been enhanced by cancer. I have several published articles that I am proud of, and that wonderful book that I never thought would come to life. I have raised funds for cancer charities. I have been there for others who have Needed the support and understanding of someone who has walked in their shoes. I have walked through the Mets clubhouse wearing my own Mets jersey that now hangs in my closet. I bathed in sacred waters in the presence of our Lady of Lourdes. I have met living miracles and am working On my own. Oh yes, cancer, my life is better because I chose to move forward with my head held high, in spite of you, come what may. And I plan on continuing to do so for a very long time. So hang on cancer, you are in for a bumpy ride. I don't take kindly to losing and I don't give up easily. Just accept that. And really, you wold be doing us both a favor if you wold just disappear or quiet the hell down for quite a while. I have things to do, and you really don't need to tag along. I will be just fine without you. But if you insist on staying, just sit down and shut up!

People survive

I don’t understand why we don’t focus more on the “miracle” cases in cancer. There are way more of them than I ever realized. I once was completely terrified of Stage IV because it was a death sentence in my mind. Truth is, It might still kill me… But no one can say when or for sure that it will. There are people who give up from the outset (which is entirely their prerogative), and without any sort of treatment, Stage IV is absolutely a runaway train. But with treatment, perseverance and hard work, it can be managed and the hands of time cane be slowed somewhat. I know of a woman who was diagnosed around the time I was with Stage IV. Sadly, she is several months gone because she opted out of treatment. What a brave choice to make, but it is not one I could make for myself. For me, I choose to fight as long as I can. I have come across so many people now who have taken a grim prognosis and not accepted a death sentence and are here today to tell the story. Most of whom are cancer free today. Perhaps that can be me too. Time will tell. In the meantime, I will act as if that will be the case, and keep pursuing the beautiful goal of wellness. I am hopeful that it is possible that I can be one of those amazing stories. So far, I am doing well, and I will take that! These days, I basically take it two months at a time, going from one set of scans to the next and enjoying life in between. I continue to work hard at my health, and so far, it seems to be helping. It certainly can’t hurt, that’s for sure. I look forward to a day when I can walk up to a cancer patient and say “you know, 30 years ago, I had stage 4. Don’t ever give up hope. You can do this”, just like a wonderful man did to me on Sunday. I want to be one of those people who gives others hope and helps them to believe that they too can do it. There needs to be a better way of showing stage IV is just a classification, not a death sentence. Patients shouldn’t focus on statistics, and shouldn’t just assume that their outlook is dismal, even if the doctors say it is. Every one of the miracle people I have met have been told of their poor prognosis by their doctors before their situation turned around and improved. Don’t let anyone put an expiration date on you. I don’t. That’s up to God…

You get used to it...

So here's something I never thought I would say: I have chronic cancer, and I'm used to it now. It will be a year in September since I learned there was the first sign of distant spread. And a few months later, things got worse. It seemed hopeless and horrible at the time. I felt like I was on a runaway train that couldn't stop.

And then I started treatment and added nutritional changes. According to my most recent scan, things were improving. I am tolerating treatment fairly well.  At this point, cancer is a part of my life that is just there. I live with it and life goes on. I often forget that I have cancer and that I am in treatment. And then I wonder why I get tired when I do to much. Or get frustrated when I feel sick. I want life to be completely normal, but it's not like it was before cancer. What I have learned is that is still ok. I am here, experiencing what my life has to offer as best as I can and that's good.

I don't like being limited, but I am learning to incorporate it into my life fairly well. I can't change it, so I learn to make the most of it. It was difficult to accept that cancer treatment is an indefinite situation, but it is getting to the point where I am ok with that fact. I had to shift my mindset. Being in treatment is good because it means there is something they can do for me. That's better than the alternative. And who knows what next great thing might be coming down the like treatment wise.

In the meantime, I try to go with the flow. I know that they can't "cure" me. But that doesn't mean all is lost. And that doesn't mean that I need to crawl up in a ball and hide because it's a crappy reality. If anything, that would end up wasting precious life. Life is good. Yes, even with cancer. It can have some potholes and crappy times, but that can be said with life without cancer couldn't it?

The wellness journey

Several people have been asking me about what I have been doing in addition to chemo to help support my wellness. And one friend suggested that I post blogs about the information and share what I am doing in case others might be interested for themselves. I got nervous about it because I don’t want people to judge my choices or think I am crazy because I have made some big changes. I also don’t want people to look at me funny if they see me on an off day or social event where I am not following my own protocol. But she convinced me that more good than harm can come from sharing my information, so that sealed the deal. She knows the way to get me to share. ;-)

So here’s the deal. First off, I wanted to state that I am no expert. I am just a girl living in a scary set of circumstances looking to do whatever I can to support my wellness so that I am better able to withstand chemo and whatever else they throw at me.  I have done a lot of research, but what impacted me the most is the cancer survivors I have met who have added something like this to their medical regimen and had great success. Several of these people have been told there is nothing that can be done to help them (which I cannot imagine how awful they must feel. Fortunately, I have not been faced with such a grim outlook from my doctors). The kick is, several of these very same people are not only still here, but even better yet, living without cancer detected in their bodies now. Can I get an AMEN?? Who knows whether or not that is in my future… That’s in God’s hands. But I do believe that these people who crossed my path have been put there for a reason, even if it is just to teach me to treat my body better so that I can tolerate treatment better.  

The reason I have made the changes I have is that I do not necessarily think any one thing is a cure. In fact, there is no known cure for what I have. However, I believe based on my research that a comprehensive approach to wellness is the way to go. Chemo has its merits and clearly helps fight cancer, but it can be toxic to the body and can affect the immune system, your overall chemical balance in your body, and healthy tissues. Given that, it makes sense to me that conventional treatment coupled with excellent nutrition and a focus on stress management to help offset potential damage from treatment seems to be a recipe for success. I have done what I have done in the name of giving the chemo the best environment to work in, and to give myself the best shot of fighting. There is a lot of information to cover, so I will start with the highlights in this post and add recipes for anyone interested in other posts.  

Ok, let’s start with the basics. Here are the highlights:

·         The goals are to lose weight (and yes I have spoken to my medical team about this because it can impact treatment. They know my general plan and are good with it as long as I keep them in the loop if anything weird happens. i.e. like if I try to gain weight or eat foods that should contribute to weight gain and am unable to add the pounds. That’s not a good sign in cancer land) being overweight isn't good for anyone's health but coupled with breast cancer does not tie to good outcomes.

·         I have cut out the processed sugar, big time. There are days when I would cut off my arm for a kit kat or a twix, but sugar definitely isn’t good for cancer, if for no other reason than because it adds empty calories, and a few other reasons as well.

·         I have cut out processed snacks mostly. Admittedly, if I am at a party on the weekend and there are chips, I will eat them, but during the week or in the course of normal life, I try to keep them out. Similar reason to the sugar.

·         I have cut out dairy products. This honestly is probably my biggest challenge! I never was a huge milk fan, but sweet Jesus, my kingdom for some pecorino romano or cheddar! Or even just some yogurt. Here’s why I cut it out. There have been several scary studies of late linking dairy consumption to survival rates in breast cancer, especially metastatic like mine… That data was enough to scare me sober! What was difficult for me though was that I was taking in extra dairy after my first bone spot was detected thinking I needed the extra calcium support. I was nervous to let that go. But I have supplemented with calcium and vitamin d in a pill form in decent sized doses and have sought out plant-based sources of calcium. I just had my first bloodwork done that checks calcium levels since I gave up dairy. The range for normal is 8.8 through 10.4. Mine was 9.4! Just about perfect. So the proof is in the pudding, or the broccoli so to speak) Here are some excellent plant-based sources of calcium: chick peas, butternut squash, brussel sprouts, many types of beans (pinto, navy, kidney, etc), spinach, calcium fortified orange juice, celery, kale.

·         I have seriously limited red meat. I am slightly anemic, so I do sometimes add a little in (like once every few weeks). Although I am anemic, my levels are consistent from before I started treatment, so that’s a good sign.

·         I have seriously restricted other meats, choose organic when I do cook it for myself (or rather when Steve cooks it for me), and have boosted my intake of plant-based protein. Included in this are beans, nuts, seeds, and quinoa (which is so good!). I do not include soy products because of the hormonal basis of my cancer, but for others who don’t have hormonal issues, this is also a good option.

·         I start my week day mornings out with fruit and veggie smoothies. I usually have two or more veggies for snacks and lunch. I typically pack nuts and a piece of fruit or a carton of berries for an  additional snack during the day. I try to drink water throughout the day, sometimes plain, sometimes flavored with lemon, lime or other pieces of fruit.

·         I have given up coffee for the most part, and if I need a caffeine fix (which hey, I work full-time, chase after a 4 year old, and am on chemo, I get tired…) I opt for green tea.

The wonderful news is that I have lost about 10 lbs since starting treatment which I needed to do… And yes, I can gain weight when I eat like I should be gaining weight (trust me, I have tried, and it’s not an issue! Never was, and I guess for once I am glad it hasn’t changed). The even better news is that my blood work is holding up great. My immune system is responding quite well and not getting totally wrecked by chemo. AND the rest of my organ functions measured by blood work are showing to be completely normal. And the recent set of scans showed the cancer was retreating. Let’s hope that trend keeps up!!

The cancer girl...

An interesting thing has happened (which on an side note, oddly enough, my spell check wanted to change happened to napalmed, I find that entertaining) over the past two years. I have noticed that I have become the go-to person for people who either have been diagnosed with cancer or love someone who has been diagnosed. It is especially true in my work place. Sadly, we are up to about a half dozen people there in about two years and several others outside of work. This is a particularly strange feeling for me because first of all, I know very little about cancer in general. I could tell you more than any of us ever care to know about breast cancer and all that comes with that, however, that is where my technical knowledge pretty much ends. Other diseases are foreign to me, and truth be told, my brain could not actually retain that amount of knowledge. Kudos to those who do!!

What I am learning though is that the emotional component of cancer is very different than the physical, and interestingly transcends the type of cancer. The feelings of fear, sadness, helplessness, desperation, and determination among others seem to be the same regardless of where those rogue cells take up shop. So, in that regard, I am finding my experience allows me to comfort others a bit and help the transition to that new normal that we all speak of because once you cross that line into cancer-land, there is no looking back. Your life changes. I can see their relief when they learn that the emotions they are feeling are common and they are not alone in this new, scary world. I can see they need to hear from someone who has been there that there is life (and a fairly decent one) after diagnosis and during treatment. I almost feel like a welcome week counsellor at the cancer college. While it is not something I would have chosen for myself, I do find that it can be rewarding to help someone and make them feel less fear and anxiety at such a horrific time in their lives. There are certain things you can only really comprehend if have had cancer or had someone extremely close to you with it. You have to live it to really know it.

I suppose this was a role I was meant to play. I can see the benefit and need of someone to be this person for others. It is an unexpected side effect of cancer for me, but one that I am starting to enjoy. I wish  people didn't need it at all, but because they do, I am glad to help. I know who those wonderful women were for me when I first started my journey. They eased my pain and fear in immeasurable ways and so it's rather nice to be able to pay that kindness forward in their honor. I hope I have done for others what was done for me. That would be a beautiful turn of events and make me grateful to be able to help people in a very unique way.

An owed update

THE SCANS WERE FANTASTIC! Showing stability in some areas but improvement in most. Yipppeeee. That is all. Carry on!

Waiting on the next chapter.

The past two months have flown by. They have been packed with all kinds of exciting things. First, my pilgrimage to Lourdes. Then my adventure at Citi field at the honorary bat girl. Then the CSC survivor's day walk. In between all of that was regular life: t-ball games, birthdays, graduations, time with family, work.

The important point to make here is despite Stage IV cancer, (or perhaps because of it) I'm blessed. I
am here. I am able to participate in many things. Several of those experiences would not have happened if I did not have cancer. My life is forever different living with this disease, but that isn't all bad. It just takes a little extra effort to find the good.

I know that cancer is scary demon to face. I face it every day, and likely will for as long as I live. I hope that is for a very long time, but I know that is not up to me. What is up to me is how I choose to manage it, and where I choose to let cancer take me.

Today, I sit between more answers. I had a pet scan yesterday and tomorrow I get a bone and ct scan.... All to see if treatment is working. It's so terrifying because the fear of the unknown is a beast. By Monday, the next two months should reval themselves. In the meantime, I will live my life because I am here and I can.

Scan update

Wonderful news to share today! I just got the results of my scans and it shows that the cancer is responding to my treatment. No new cancer is detected, and the previous spots are either smaller or are stable.... All wonderful news. I will continue to participate in this study and with this regimen.


Thank you for the prayers and love! They all mean the world and are helping.

If you would be interested, there is a faith related post in conjunction with this one at http://nmalato2.blogspot.com

Reflecting....

The last eight weeks went fast. Maybe faster than I prefer. Today is my last chemo dose before scans will determine next steps. If the scans so no progression of disease, then I stick with the chemo protocol for another 8 weeks. If not, then plan b which I believe is on to an oral daily chemo drug. Of course, I know what I am hoping for.

Looking back, I have to admit, I was apprehensive about working full time through chemo, especially with busy season looming large. However, I did it! I impressed myself. It wasn't a perfect 8 weeks but I managed to get through it, and I am proud of that. Goes to show that advanced cancer isn't always as devastating in the near term as I would have thought. Granted, the next few days will tell me if I am getting the disease under control or not. Advanced cancer is always a scary threat, and scans, while they are helpful in the management, are the largest source of anxiety in the world. and I have to admit, it will royally piss me off if I lost my hair for nothing.

But I have done all I can do at this point and what will be will be. I just hope that it's time for a bit of good. We will have to wait and see.

The quest for health

Wouldn't it be awesome if we came with an instruction manual that had all the answers to keeping us healthy and living long? Unfortunately, no one has written the complete version of that. So what's a girl with a chronic illness to do? Truth is, there is no perfect answer to that. But my inner control freak isn't ok with that "sit back and do nothing" plan. 

It's rather funny that I never knew I was such a control freak before I lost control to cancer. I guess we always learn more about ourselves every day. Anywho, I digress. So what can I do about this cancer thing? Well, first off, I'm going the conventional medicine route. I took my third chemo treatment yesterday and am currently praying for sinus issues and nosebleeds as this will be an indication of which arm of the clinical study I am in. It feels good emotionally to be in treatment. It feels like I am doing something to fight these tumors back. 

But it's not enough. I have totally revamped my diet. I've been doing a lot of research and have tried to focus 80 percent of my diet around plant based, clean eating. It was weird at first but it's definitely feeling good. Aside from the chemo side effects I feel healthier. I feel leaner and stronger. That's kind of cool. My new favorite additikn to my day is my breakfast, I start each day off with a fruit and veggie smoothie. This morning was blue berries, black berries, apple, almonds, spinach, asparagus and kale with a dash of cinnamon. I'm hooked. I'm just short of a month into my smoothies and I love them! 

I am just hoping to help my body along. I am also focusing on keepingy stress levels down and relaxing my body. I do believe stress fueled my condition. Hurricane Sandy anyone? Something tells me it's no coincidence that my cancer professed aggressively after that craziness! So what am I doing there? I take time every day to relax, meditate and pray. Gotta heal that soul if I'm gonna heal the bod. I don't know if any of what I am doing is going to help my prognosis but it won't hurt. And in the meantime, it helps me to feel more well. And I guess that's the best anyone can ask for.

One more quick thing. I hope she doesn't mind me announcing it, but I'm so happy I want to shout it from the roof... Since I am afraid of heights this will do instead! Mom had her follow up and got the results this week! No sign of cancer!!! Halleluiah! Thank you God for answering our prayer!! Yippee! Please keep her well and blessed. Amen!

Happy birthday to me....

Today, I turn 36 years old. It's funny, for some reason, when people ask me how old I am, I often think of myself as 34. It's as though time stopped still for me when I got cancer. But as much as it seems that way, time marches on, and here we are, two years later. Life has gotten more complicated, but at 36 years old, I am every bit as blessed as I was two years ago... And perhaps in some ways, even more.

I am able to see the blessings in my life more clearly. I know now that even through adversity, I am still the same old me. I have seen hard times, and yet, I remain the same girl I always was. Maybe just a little stronger, but still as faithful and optimistic as I was before. That's not to say I don't have my angry or fearful moments, but it's to say that with a lot of work, I am able to rise above them and feel like me again. Challenges did not render me unrecognizable to myself.

I will get another chemo treatment today. When reading my chart last week, my nurse asked me if I wanted to schedule today's appointment for another day. I said no. While it's an odd choice, it's my birthday present to myself. Chemo is the gift that keeps on giving and it's the best chance I have to celebrate a boatload more birthdays. So I love myself enough to give me the gift of the fight. Happy birthday to me. I am worth the side effects!

The truth is, I remember being freaked out about getting older. The thought of being closer to 40 to 30 was once something that would have made me cringe. Rather, these days, I embrace each new age. Grateful to be here to see it, and to enjoy it. Don't fear getting older, folks. Instead, love every second of it because it means you are here and you can! That's my plan. I will savor every grey hair. I will celebrate every wrinkle. I will blow out every extra candle on the cake. Because I am here, and because I can.

Thank you God for my 36th birthday!

Love and light.

And I know just how to handle this...

A few years ago, the country girl in me heard a song that brought tears to my eyes. Beautiful and relatable to any girl who has faced any kind of challenge. At the time, the second verse rang true to me as I was continuing my climb up the corporate ladder to the job I wanted for so long.

Now, the last verse brings the tears to my eyes and a sob to my throat and reminds me to hold my head high and give it hell. Tomorrow starts chemo again. I had hoped that it would be a chapter in my life never to be revisited, but alas, not meant to be. God wants me to keep fighting, and so I shall. I will not let this define the light in my eyes... and I will fight like a girl...

cancer, you are a stubborn sonofabitch... but you just don't know how determined I am. You are about to find out. I am not a statistic. I am not a victim. I am a survivor. My pink gloves are on!

 If you feel like tearing up, here's the video: http://www.youtube.com/watch?v=V96r2046qjE


"Fight Like A Girl"

Little girl alone on the playground
Tired of gettin' teased and gettin' pushed around
Wishin' she was invisible to them
She ran home cryin', why do they hate me?
Her mama wiped her tears and said,
Baby, you're brave and you're beautiful

So hold your head high
Don't ever let them define
The light in your eyes
Love yourself, give em hell
You can take on this world
You just stand and be strong
And then fight like a girl

31, she was wheelin' and dealin'
Kept on hittin' that same glass ceiling
She was never gonna be one of the boys, no
She could of gave up on her ambitions
And spend the rest of her life just wishin'
Instead she listened to her mama's voice sayin'

So hold your head high
Don't ever let them define
The light in your eyes
Love yourself, give em hell
You can take on this world
You just stand and be strong
And then fight like a girl

Oh, with style and grace
Kick ass and take names

10 years of climbin' that ladder
All the money and power don't matter
When the doctor said, the cancer spread
She holds on tight to her husband and babies
And says, this is just another test God gave me
And I know just how to handle this

I'll hold my head high
I'll never let this define
The light in my eyes
Love myself, give it hell
I'll take on this world
Yes, I'll stand and be strong
No I'll never give up
I will conquer with love
And I'll fight like a girl

busy week

This week is a busy one for me. Today, I went to Hackensack to start the process for the enrollment in their clinical study. If I decide to go this route, it essentially will be Taxol chemo again with the possibility of Avastin which is under study for possible FDA indication in metastatic breast cancer. I did all the prep so that if I decide to go that route, the process is underway and treatment can begin soon. Needless to say, it was a LONG day, but I got through it. Thank you Donna for the company, moral support, and chuckles. Oh and for not letting me beat up the CT scan registration people.

Tomorrow is just a normal day in life for me. I work a full day. Not tests, no consults. Imagine that!

Thursday is where things get tricky. My consult with Sloan is at 4 in NYC. It's the big time! I am going to share Hackensack's thoughts with them and see what they have to say. Then I need to hunker down with Steven and think long and hard about what my next steps will be. Please understand that this is a really hard process for us. There is a possibility of switching oncologists this week. That's a very scary prospect for me.

Although we have struggled in our treatment success, I have developed a great relationship and very much respect my doctor. I actually was getting emotional at the thought of potentially leaving his practice. If it's what I need to do, then Steve and I will make that decision, and so be it. I will do whatever we decide is best. But it will be hard if leaving him is what we need to do.

Pray for me that I make the best decision for the best outcome for myself this week. Pray that I get clarity that I currently do not have.

balloons

There are times when I am weighed down under the seriousness and stress of my disease. It's a scary deal, knowing that my body is trying to attack itself. It is not pleasant to think of the treatment that lies ahead. Add that to normal every day stressors, and it gets overwhelming.

This week was one of those weeks for me. It was a tough one. Very emotional, very busy, very overwhelming. But then there were the balloons.

A tidal wave of pink ribbons and turtles on facebook from my sorority sisters, many of whom I haven't seen in about 15 years. A message of love and hope from 3 sisters who have repeatedly snuck up on me with happy surprises and support. The kind of best friends who can tell me what I need to hear, and keep my head on straight when I need them most. Random cards in the mail, or notes of support. Emails and flowers. A wonderful friend who is casting on with yarn to keep my head warm. Another sweet friend who is always on stand by with a joke when I need one. A silly son. Family who I can always count on for emotional support, help when I need it or to drive my sorry ass to my appointments. New and old friends who treat me like a normal person, not a cancer patient. A husband who has washed more dishes, and cooked more meals than I can count... And who gave me the good pizza, while he ate the burnt pieces.

Each one of these and more are balloons for my spirit. The more balloons I have, the higher my spirits. I need to keep my spirits up. The fight ahead is a long one. I expect the road will be bumpy. But I am lucky to have balloons to help me. I need them to keep me from falling down, and staying there.

I know chemo is coming. I know how demoralizing chemo feels. I just got my hair to where I want it to be, and it's going to be taken away from me again. But if that's the cost of the fight, so be it. I have balloons to lift me up. And for that, I am grateful.

dreams

Last night, I dreamed that I was in my parents old basement. I was hanging out, minding my own business. Suddenly, I saw a huge spider slide down a web from the ceiling. Then there was another one, and before I knew it, there were countless spiders and other bugs creeping around, and some even crawling on me. I freaked out (and I am sure a reader or two might be shuttering too). SO gross! In the dream, at first I panicked. Then a faceless voice told me to get bug spray and kill the bugs, so I did.

I woke up at 2 a.m. with the creepy-crawly feeling and a decent hot flash from my battle with the bugs. So since I was awake and had time to kill before I could go back to sleep, I checked out the dream bible dictionary website to see what it said about my dream. Here's what I found:

"Spiders
To dream of a spider represents feeling trapped or hopeless. A negative situation that feels inevitable or impossible to escape. Beliefs about things that you think are permanent or will never go away.

Alternatively, spiders may reflect irrational beliefs. Powerful insecurities that prevent you from doing what you want in life. Irrational fears that prevent you from enjoying yourself, or powerful desires for things you don't believe you can ever have."

Here's how I'm taking this. Of course I feel like i'm somewhat trapped in the world of metastatic breast cancer. I know it's something I can never really get out of. However, It's not hopeless, and I can do something about it, hence the bug spray. I guess that was the chemo popping into my dream.

Moral of my dream story is this. There are times throughout this ongoing journey when I am scared out of my mind. There are times when I feel like I am stuck and can never get better... And then there are times when I get my head on straight and grab the bug spray and move on.

You mean pink isn't just for ribbons?

Nope. It's the color of love. It was funny to see fb all pink today and NOT have it do anything with breast cancer. I had become so conditioned to associate pink with a disease, that I forgot its more conventional meaning: love.

I received pink flowers this week, and a pink prayer shawl. Both acts of love. It's amazing how something like cancer makes you forget things you once knew. Valentine's day, cupid, pink hearts... That's what pink used to be associated with for me. At first, I was taken aback, and happily relieved to see the sea of pink have nothing to do with mutant cells today. Hurray!

I had forgotten. I was too focused pink representing on awareness, research, and treatment. Then I realized something: pink, even when it's in ribbon form is still representative of love. I suppose the color was chosen because breast cancer is typically girly, but I think it really is because there is so much love surrounding those of us with cancer. Love and support are the best complimentary therapies there are. And there are no side effects.

Happy Valentine's Day everyone!

Oh Cancer, will you just frigging stop already?

So, the bastard is back again. The biopsy confimed that the cancer is active and kicking in my body. DAMMIT! I am on a roller coaster right now. The prognosis is strong still. It's not great, but it's doable. They repeatedly reminded me that bony metatasis does not kill people. The trick is to keep it out of the places that could. Talk about pressure.

The next chapter is likely to include chemo. Radiation is possible, but it depends on the chemo. Radiation would certainly kill the spot in my leg. The problem is that there are cells floating around my body looking for the next place to grow. That's what we need to stop.

The spot in my bone is ER-negative, PR-mildly positive, and Her2 negative. So no more hormonal torture for me because it's not working and I don't have much hormonal activity going on anymore. Now it's the rogue cells that need to be hunted down and killed. I am grateful to have a plan. I will be going to Sloan for a follow up/second opinion. But likelihood is, wigs and hats are in my future. I can't lie. That part plain sucks!! I was loving my hair... I don't want to go back to being bald and ugly. Men can pull it off. Me, not so much :-(

The drugs they are talking about should be very manageable. I should be able to work and even go into the office regularly. I should be able to exercise (watch out Jami). I can travel, and live my life. Just rocking the hairless look.

The other sucky part about all of this is seeing my loved ones stressed to the maxed and heartbroken. My cancer doesn't really bring out the best in people who are worried about me. That breaks my heart. I know it's not my fault, but it still kills me to see. Please pray for all of them that they can find peace in this and be ok with all of this. It makes it so much harder for me when I see the hurt in their own eyes.

Tomorrow, I go back to my surgeon for the followup and I pick up my copies of my sloan paperwork and then I wait. I should hear from Sloan in the next week as to who can meet with me.

I did have one good sign. the very first thing I saw when I walked in the cancer center was a story of a woman who has been fighting metastatic disease for more than 20 years. Mark my words, I will be like that too. I will not quit. I will fight like hell... I have too much to live for. Life has to go on. I have too much to do!

Medical update

I know there have been a lot of questions surrounding this latest new development. Let me bring everyone up to speed. In September, my tumor markers were up. We did scans then that revealed I had a spot on my spine that was suspicious for cancer. They wanted to biopsy it for the purposes of checking the tumor profile with the thought that if the her2 protein was showing over expression, we could add herceptin to my treatment mix. Unfortunately, the location of the lesion was too tricky and the information was not worth risking my life for. So we treated it with what we knew, and radiated it.

Fast forward to January and time for follow up scans. The good news is, the original lesion on L2 was showing no cancer activity and by all 4 scans was healing beautifully. The bad news is, there were two new areas of concern that popped up as possible issues. Another on my spine (this one T11), and one in my right femur. A few weeks prior to the scan, I fell down a flight of stairs, so we were hoping that some how, the concerns were related to that. So MRIs followed.

The T11 spot was consistent with injury, and was deemed not cancer related at this time. The right femur however, looks consistent with cancer, and a biopsy has been ordered to confirm and to check again for the her2 marker. That brings us to today.

What will happen today is they will knock me out (and hopefully put some good antinausea meds in the bag), they will do what is called an open biopsy where they will make a small incision in my leg, and then drill through the bone to the spot to get a sample. Aren't you all jealous? What an exciting Friday afternoon! UGH! So to allow the bone to heal from it's date with a drill, I will be on crutches for two weeks and can't drive. I should get the full results on February 13th...but might the preliminary "is it cancer or is it not" part sooner... Truth be told, it is very likely cancer, but you just never know. Either way, I am ready for whatever comes next. If it's time for more treatment, so be it.

I also will be seeking a second opinion at Sloan to see if we are missing something or even just to get validation on my current course of treatment. I am relentless and will keep doing what I need to to beat this thing. If I am successful at knocking out this tumor, that will be the third time I have beaten back this disease in less than two years. Let's hope 3 times a charm and I get a little break in the action after this!

Thanks for the prayers love and support. They are always welcome and appreciated. I also would ask for prayers for my family. Everyone is struggling with this. I hate seeing them hurting because they are worried about me.

Living with cancer

So you will notice that I don't capitalize the "c" in cancer. That's something that I have decided to do as a symbolic gesture to not give it more importance than it deserves. I am living with cancer. It means that it is a part of my life, but it does not define my life, nor does it completey control my life.

Part of living with cancer is accepting that things can change at any time. That can be an improvement or a setback. It's a difficult shift. When I first was diagnosed with stage 2 cancer, I thought I just had to get through it, and would come out the other side and be able to leave it behind. what I didn't realize is you really can never leave it totally behind... But most especially if you advance in stage.

But not all bad things come of it, and life doesn't have to suck just because I have experienced metastasis. I won't let it. I really have an issue with cancer trying to control everything. It doesn't seem like it deserves that right. I am fortunate that now I am aggressively screened for recurrances and will be aggressively treated as need be... And in the meantime, I just pray that I don't need more treatment. But that's out of my hands. What I can do is just continue to smile, laugh and love. That's what I always did. Why should I stop now?

Yes, I am living with chronic cancer. but what the heck.... who cares. I'm living!

Dear cancer...

Dear cancer,

We have known each other for almost two years now. I guess there are a few things you should know about me I would think you would have figured then out by now but it seems you're a little stupid. I might be generally nice and relatively forgiving. What you don't seem to realize is I can be a tenacious bitch when I want to be. I am a Jersey Girl, which means I am tough and feisty at times. I am three quarters Italian and one quarter German which means hidden deep in me is a stubborn streak a mile wide. And I had three brothers growing up which made me believe I could accomplish anything, and it taught me to throw a punch.

I know you are a relentless pain in the ass, cancer. And I know you are probably going to try to keep coming back. However, you need to know that I am going to keep fighting. I am going to be your worst nightmare. What you don’t know is that when the doctors try to convince me to take a treatment, I need no convincing… Any tools they have to give me to fight you, I will take and I will run with.

So if you enjoy being cut, burned, poisoned and starved, so be it. I am going to keep doing those things. You can rest assured of that.

And I will continue to focus on my healthful living (granted, the holidays allowed me to slide a bit off track, but it’s January now, and I am back in control of that). I do not intend to give you excuses to come back. I can’t control you, but I can control me. And I can control what I do to fight you.

Clearly, you haven’t learned your lesson. I will keep beating up on you as long as I am able, which you should know, I intend to be able for a very long time. I don’t give up a fight easily and even though I have been through one hell of an 18 months, I am re-energized, and ready to be called back into battle to kick your ass again should it be necessary. Seeing my L2 looking all healthy and pretty on the screen breathed new wind into my sails.

I pray we never meet again, but know that if we do, I will haul at those boxing gloves again. Do me a favor, just stay away for a while. Save yourself the embarrassment of my beating up on you, ok?

Most Sincerely,

Me

new post up under "all these things plus one"

Cancer specific post is up. check it out: http://nmalato.blogspot.com

:-)

I am here and that's what matters...

This one goes back under the category all these things plus  one, rather than stained glass because it’s predominantly about cancer. In the next two weeks, I enter the latest section of my diagnosis. My cancer world is carved up into 3 month chapters that will play out as time goes on. Every three months, they run scans and I get “re-staged”. I will never officially be allowed to come out of stage IV now, but I can potentially get to the ultimate goal of being “stage iv, ned… no evidence of disease” which means we have managed the detected cancer flare up, and I am currently stable. I don’t know if this round of scans will bring that, but certainly, it’s what I am praying for. I want to be medically stable. That would be good news of epic proportions for me. It means the next 3 month chapter of my life will be just a bit more hopefully, a bit more care free. Or, if I do not get my desired “NED”, I will find out what the next plan is. This will be the ongoing process of my life for the time being. But the fact that the scans and the treatments loom will not interfere with my life. I am here. I am not dead, nor do I plan on being so any time soon.

For now, here’s what I want to focus on. I am able to do what I want to do. There is so much of life for me to experience.  I might not be able to make major plans more than 3 months in advance, but that is ok. That keeps me more focused on the here and now which is not a bad thing. It helps me to enjoy living in the moment, something I often struggled to do. I am currently able to work up to my usual standard. I am able to be a mommy to my precious boy. I am able to be a wife to my beloved husband. I am able to be a sister, a daughter, and a friend. I am still me. I am not my cancer. That brings me to a new point. I am considering a new project: one that will bring hope to women in any stage of the disease. I have bounced it off a few people, and I really think that this is something the world needs. More hope for women who have cancer, including those with metastatic cancer. My purpose here is to help others feel stronger and more empowered. I believe I can make a difference for women who need it. If you are a breast cancer survivor (and yes this includes women in active treatment),  and are interested in learning more about the project  please reach out to me. If you don’t have my contact information, you can message me through my book’s fb page: “when life hands you pink lemons”.

In the coming weeks, please keep me and mom in your prayers. Mom has her regular followup. I have scans. Both are anxiety-inducing. Pray for our serenity, and pray for good news. We greatly appreciate it. I do believe God is listening.