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!