A CAT/Katz Kind of Day.

I had a CAT scan done this week at NYU in the city. Frank and I have made a tradition out of the day, by having the CAT scan done, following with a meal at the famous Katz’s Deli on Houston Street, so we refer to it as our CAT/Katz kind of day. 

So, like everything else in the last couple of months, I tend to look at things that happen in my life with more perspective, more analysis, and a lot more appreciation. I am a people watcher, so you can sit me just about anywhere, and I can entertain myself for quite a while by watching the people around me. Especially in a restaurant when I see two people at a table, I immediately try to figure out their scenario. Father/daughter or boss/assistant, husband/mistress, or two friends, sisters, siblings, cousins I think you get the idea. But of late, my ideas take me to a different place of curiosity. I look at their overall appearance, I look to see if a lady is wearing a wig, or if I see someone limping, I wonder what is causing it. I have become so aware of my own health, that now I look at other peoples too.  

Prior to going for my CAT scans, I have to pre-medicate because I am allergic to the contrast die they inject into me to get the images. Of course I am allergic! Why not!?  So, I take Prednisone (a steroid) the night before and again that morning, to help counter act any reaction I may have. Also, I cannot eat for 3 hours before the exam. By the time I get to the hospital, the steroids are in full swing, and I am talking 100 words every 12 seconds, my leg is bouncing and I am hyped. The really good thing about the steroids, is they take away all of my pains. So now I am hyped up, pain free, and reallllllly hungry! Ok, we sign in, sit and wait for the barium for me to drink. YUM! Fruity Tuity! So delish… actually, it is not that bad, and goes down pretty easily. I also have to now take 2 Benadryl’s (also to help any allergic reaction), and in 15 minutes I go from whhhhhhhhheeeeeeee let’s have a party; to… does anyone have a pillow?   

Sadly, the nurses and radiologists know me here. They come out and call each patient one by one with a questionable tone as they say each name, not knowing who will be answering. When it is my turn, she calls “Nanci Cacossa” first with a question, then say’s “oh! It’s you! How are you?” Great… what an honor for me to be known so well at the Radiology floor!  

This time, Evan joined us, so as we waited the hour for me to drink my Fruity-Tuity,  Frank reads the paper then nods off for a bit (he has been up since 3:00 AM, it is now 5 PM), Evan is typing away on his phone, blogging for his Islanders Checking Line assignment, and me….. I am watching. Hummm, the girl across from me seems very healthy. She is young, pretty, thin... I wonder why she is here. Then they give her the barium drink… Uh oh! Stomach issues…  She had noticed I also was drinking the potion, and started to ask me a lot of questions on how this stuff would affect her. I can tell she is very nervous so I calmly tell her how my body processes it, but explain that everyone is different, but not to worry, she is in good hands. More questions… I answer… She seems to be a little more at ease now which is good for her. I REALLY wanted to ask her why she was there, but common sense told me not to… Ahhhh, out comes the woman who is dressed like she is a CEO of some kind of bank. Ya know, very businesslike, standing and walking straight up, she is skinny with heels on from Easy Spirit. Yup, there she goes, boy does she remind me of Mrs. Hendrickson (a 6th grade teacher - real meany)… No eye contact going in, none coming out. Bye, and have a great day, I thought. But then the notion came to me about why she may have been there, and why she may not have been smiling or making eye contact, remembering she wasn’t there for a social visit. I wonder what is wrong with her, and to myself I hope that she is OK and finds her smile again.  And then, there was “the man”, the one who keeps smiling my way trying to bring up a conversation with me. He sat there drinking his gallon of water (no barium for him), his legs were crossed wearing beige slacks, his black coat was folded across his lap, and his arms were crossed over his coat. This whole image struck me odd. Here he was trying to make eye contact and chat, yet every part of his body language was saying, “leave me alone.”… Again, no clue as to why he was there, one thing about this place is they are VERY private. As I was heading in for my exam, a much older gentleman was being assisted out. He had a portable oxygen tank with him and the hoses up to his nose. Now with him, I had an idea of why he was there, and all I could think of was how difficult his days could be having to lug that huge tank around with him where ever he went. But that tank is his lifeline. I bet he has very strong shoulders.  

I go in, I lay down, I smile for the imaging machine. They inject me with the contrast, they take another set of pics, and then my eyes, ears and throat start itching, my nose starts running, test is over. They escort me to a waiting room, and give me a blanket and hot tea and monitor me for about 15 minutes to make sure I am ok to go. I am good to go, and Frank, Evan and I go to Katz’s Deli!

I love Katz’s. Not only do I think they have the best pastrami in town, I love the whole hustle and bustle of the place. Six men standing behind the counter cutting up pastrami, corned beef and brisket for sandwiches, while putting samples on plates on top of the counter for customers to try. Each man has a “TIP” cup in front of him, as he yells out “NEXT, step down please” to those waiting on line. We always tip them, because the more you tip, the bigger your sandwich!

“Three pastrami’s on rye please, two with mustard, and we like the half sour pickles not the sour ones please”… they are so happy to oblige, especially when they see you tip them!

We get our sandwiches, fries and potato latkes, and split everything. Total enjoyment.  

Again, I sit and watch all the folks around us. New York City, has some very interesting people there, so this is really a great show for me! Here I don’t think of medical issues though, I think of what their lives are like. Where they work, where they came from, what language is that!!?? Oh, the pastrami is so good…  

Time to hurry home now, because the barium/contrast die cocktail is starting to make noises in my stomach. This means I need to be home within the hour! Whew… made it in time…  

The results came back today. I am not surprised at all. Some of the cancer spots are the same, others show mild increases in size. The newest of chemos (Abraxine) is not working. It is supposed to be part of the Taxol family and work better than Taxol. But, as I have always thought, a medicine only works as well as the individuals body will allow it to. I will probably start yet another chemo type on Tuesday. I wish Dr. S. would let me try the Taxol again. He has the product, and the allergic reaction I had is an enigma to all on many levels. I still say it was a fluke, and let’s try again. He feels that once an allergic reaction presents itself, it is not worth to take a chance and put one’s life on the line for their throat to close up. I guess that’s why I am not the doctor and he is! 

 Not to be a “Debbie-Downer” so to speak, but I am a realist, and have a very good understanding of what the statistics say about the life span expectancies for ovarian cancer patients. I recognize that some women can fight it once and never have to look back again. I know that others can fight once or twice and may not come back for years or ever. Then there is me. I have been fighting on and off (MOSTLY on) for three years, and as of now, I still have a fair amount of the disease in me and have not been in remission for a year. And if I do go into remission, the question is for only how long before the beast resurfaces itself, for me to fight it again? According to what statistics say, life expectancy for OC patients such as me is about 5 years. My dear friend Louisa lived only for 4 years after her diagnosis, and although her journey was much different than mine, and more difficult, the reality is right in front of me. In the last two months or so, I have been listening to the whispers my body has been telling me with its pains and weakness, and I feel it is fair to say, that I will be part of this statistic, which really sucks, but it’s OK. I still have time to live, love and breathe, and that is what I will do for as long as my body allows me.

Harley... He just always knows. xoxo

My Wonderful Buffalo Sisters

As I pass through the three year mark of my ovarian cancer journey, I have been making the time to reflect back on my life and see how blessed I am to have the wonderful women that I do in it. Sorry guys, this is not about you this time!

I have my Baldwin sisters, my Buffalos sisters, my cancer sisters and many other sisters that I have met along the way that are also a big part of my life. I use the word sisters because they are more than just friends to me. Each of them has had a positive impact on my life in one way or another. I have known many of them since we are children and some since our college days, which are the ladies I have had the honor of watching grow into beautiful strong women. In this blog, I will talk about my Buffalo sisters:

2001

Helen's 50th - 2011

A few weeks ago I went to dinner with my Buffalo sisters (as I lovingly refer to them). We do our best to get together for each of our birthdays, especially now as some of us are becoming the big “50”! They are my dear friends that I made at the University of Buffalo. Jody couldn’t be with us, so we were minus one. As we sat at the table, I mentally removed myself and looked at each one them, thinking of what they looked like when I met them in 1981, what they were like then and who they have each become 29 years later. So much life has transpired between then and now. Between getting married, having kids, getting divorces, getting remarried, losing parents, illnesses, jobs, job losses, 9/11 and so on, the one thing that stood out to me, is that they are all survivors. We are all survivors. As I was listening to our conversations, I noticed the difference in our reactions to situations of present, versus the way we would have responded to them then. Geez, we are really grownups now! How did that happen?! We are proud moms, worried moms, and hopeful moms. We are loving aunts, and dear daughters and sisters. Each of them hold wonderful jobs (I used to, but not any longer due to the beast), and are successful within their careers and within their lives. Each of the five of us has very different family dynamics, yet, we are all the same. We love, we care, and we embrace them.

Gayle's 50th - 2011

While we were taking our turns updating each other on our lives, I also noticed the drastic difference in our topics of conversation this time. Usually, we talk about fun and happy things, yet this time, we were more solemn. We talked about mom’s that now need our care, our kids that are now in college, our kids going to college next year, sisters that we love or love because we have to, dads that are getting up there in years, and although are doing well, we can see the changes of getting older in them. And, of course we talked about cancer. One of these ladies is a breast cancer survivor, so two of the five of us have been stricken by this horrible disease. She thank G-d is clean and doing very well.

Relay for Life - June 2009

I have been through so much in my own life that I can relate to many of the issues that came up. But the one that really affected me the most was when Gia and Connie (names changed as this is personal info) talked about their moms. It is so apparent of how much they give of themselves to caring for them, the way their mom’s cared for them as they grew up. It is not an easy task for them physically or emotionally. Gia’s mom lives in the bottom half of her home, so pretty much Gia is on call 24/7. She works full time, and comes home to take care of mom. Her day starts with mom at 5 AM every day, even the weekends. She has six siblings of which five live locally and help out, as well as her wonderful husband who is so incredibly kind. Gia accepts her responsibility and assists her mom with a golden heart. That is just who Gia is, and always was. I call her Saint “Gia”!

Connie’s mom lives in NJ, and Connie lives in NYC so for her, she works full time in the city, then commutes to NJ to see her mom and help out where she can. She is one of 3 sisters of which one is not helping out at all. Connie’s mom suffered from 5 plus strokes in a very short time and has watched her mom go from a brilliant, assertive and strong woman to someone who has lost her short term memory, and needs care around the clock. This is a devastating change to see in anyone, especially someone you have looked up to and has been there for you up to the day she got ill. When Connie was telling us about her mom, her whole face changed. Connie is a gorgeous brunette with big doe-like eyes whose makeup is always perfect with a bright smile, but when talking about mom, her sparkle faded, she was saddened and distraught. I have seen Connie go through life’s BS before, but this was different. I wanted to take her in my arms and hold her and let her know everything will be ok. I wanted her to be able to feel the strength I could share with her that we can all share with her, so she knows she is not alone. Connie is an amazingly strong and passionate woman, but no matter how strong we are, it makes us stronger to have support, and know you are not alone.

When I got home, I looked through our pictures from our years in college, from living in the dorm to moving off campus. And then I reflected on the years in between. Each moment at the time seemed to last forever, but now looking back they were all very small chapters of a lifetime of memories gone by. I love my Buffalo sisters with all of my heart. They put up with so much of my drama (as I did theirs), there were times when they were mad or fed up with me, but they stuck with me. They loved me unconditionally, as I do them. They have fun stories of me that only they can laugh to (IE: Gloria), they knew me as the student that really wasn’t, the one who had the temper, the strong mind and will and the one who would fight for them and with them no matter what. We lived together for years in a house with ONE bathroom! Hello!! That was SIX girls with ONE bathroom, and we made it work.

Looking back I see that our love and respect for each other started way back then, almost 30 years ago. How blessed I am to have fallen where I did, to allow me to meet these wonderful ladies, that have improved my life and who I have become.

I love each of you and will forever.

Thanksgiving and The Quality of Life

Thanksgiving 2011 marks my three year mark to being diagnosed with ovarian cancer stage 3C.

In years past, Frank and I did our Thanksgiving on the Saturday following the Thursday holiday. Being we are both divorced and our kids have another parent, this makes it so much easier for everyone (especially the kids) to share the holiday with everyone. Our Saturday Thanksgiving’s grew over the years to where we invited not only family, but our friends with their families as well. It made for a fun day to celebrate. Two Thanksgiving’s ago in 2009, we had a large crowd of family and friends close to us. It was a wonderful day I will not forget, because I had beaten the beast and was cancer free. A lot to celebrate. 

Thanksgiving 2009

Thanksgiving 2009

Thanksgiving 2010

Thanksgiving 2010

When the cancer returned that January, I was on chemo for 11 months. There was no way I had the energy to do our usual big traditional Thanksgiving Saturday, so we had Franks parents, Evan, Britt and two of Britts friends. I figured no big deal; we will pick up where we left off next year.

However this year, once again, the cancer returned in January, and I have been on chemo ever since. Once again, I was not up to doingThanksgiving Saturday, actually I wasn't up to doing much of anything, and I have to admit it hit me hard not being able to do it this year. 

Our close friends, Karen and John, invited us to their home out east in Southold for Thanksgiving. Wow, I love it out there. It is very relaxing to be there, and I love Karen, John and both of their kids, this would be just what the doctor ordered. It took a little juggling of Frank’s and Evan’s schedules, but it all worked out for us to go, except Brittany couldn’t come, because she was with her mom for the holiday, and we didn’t see our parents this year. It was bitter-sweet for me, but it comforted me to know this was the first year in at least 14 years, Evan and I would spend the actual Thanksgiving Day together. Being with Frank, Evan, Karen, John, Carly and Johnny out east was perfect for me, I wished Britt could have been with us too. This was going to be a wonderful Thanksgiving.

Harley not feeling very well, and
Bailey comforting him :)

I prepped some food dishes for Thanksgiving dinner here at home. Karen drove me and our dogs out on Wednesday. Well…. Let the fun begin! It was cold and rainy out that night, and Karen thought best to take Ocean Parkway, to avoid a good portion of the inevitable holiday traffic. I knew Harley (our Golden Retriever) gets carsick, so I gave him two Benadryl for him to go to sleep. Ha! No chance for that to happen, and 20 minutes into the ride, Harley got sick… Ughh… pulled on to the shoulder of the parkway, I got out, and insisted Karen stay in the car, because she was on the driver side next to the road and I was afraid she could get hit by a passing car, except when I got out, and took Harley out to clean the mess, Harley managed to maneuver the collar off of his neck, and was walking in front of the car. Karen yelps out to me, I scream, then I play sweet and call him over to me. Thank goodness, he came to me. My heart was in my mouth, thinking the worst. So much flashed through my mind in those 10 seconds. So, Karen gets out of the car, and she cleaned the mess as I tightened Harley’s collar. Back in the car we go, where Bailey is waiting for us, wondering what the “F” is going on!! Another 20 minutes later, Harley gets sick again… holy crap. We were by Captree, so Karen pulled into the parking lot, we took out both dogs, cleaned up and off we went…  Now… I must add that I had purchased a car seat cover for dogs to sit on the day before. I didn’t want Karen’s SUV to get ruined, and that seat cover is the best thing invented since sliced bread! NOTHING seeped through it!!! We are now getting close to her house, and she decided to take another detour to avoid a heavily trafficked area. Good call Karen!!! Yup! You guessed it, Harley got sick AGAIN! There was a 7-11 right there, we stopped, Karen ran in and got a roll of paper towels, and Clorox wipes. The rain had turned into drizzle at this point, but it was still freakin’ cold out there! As Karen has the dogs on the leashes in the parking lot, and I am cleaning the mess, I look over and see the inside of the door… Holy sh*t, the flippin’ dog tossed his cookies all over the handle, and door. I tell her “don’t look!” She say’s “don’t look at what?” I said (as I was laughing) “just don’t look!!!” I had to tell her. Well, Karen earned another pair of angel wings at that moment, because she laughed, instead of getting mad! I love this woman! Oh, I forgot to mention, that John’s Aunt had baked him a pie, that we needed to keep straight and in 1 piece. So through all of this going, stopping, puking, cleaning, freezing, etc… we made sure the pie was good!

Finally we get to the house, and I was sooooo happy to be there. We pull in and drive up their long driveway, and there is John by the house. Whew! We made it, and here is your freakin’ pie!

Johnny and Carly, came out later that night. Such great kids, I adore them. The night was kind of long, as my pups were in a new place and a bit unsettled. They woke me up to go out once in the middle of the night, and then in the early morning. Well, the madness continued… Harley took off and Bailey followed him (no, I didn’t have them on leashes, because they had been coming right back to me when I called them, except now!), into a neighbor’s back yard and then gone…. So I have to wake up everyone to help me get the dogs back. This was a real reality check to me that I couldn’t run after them to get them. I was virtually helpless from aching knees, ankles and hips combined with a very low energy level. They got the dogs back (Thank G-d), and the rest of the time it was leashes or no outdoors! A great way to start off Thanksgiving Day!

Bailey (on a leash) watching the
boys toss a football around.

Evan drove out that morning, and Frank came a bit later. It was such a nice feeling of love and friendships, with happy kids, happy pups (they have a dog named Buster who is tiny but full of life!) and just being able to celebrate the holiday with such good friends. Later in the day, John’s folks joined us as well. It was a typical Thanksgiving Day… The women were in the kitchen, and the men were watching the football game and tossing a football around in the yard. The dogs were running around outside with them, on their leashes, which really limited their running space. Dinner was delicious and there was so much food, it was crazy, but leftovers are always a welcome thing to have around!

John’s folks and Frank left later that night as he had to be at work at 3 AM for Black Friday. Evan and I stayed over (Evan and Johnny are great friends. They have been friends since the 1^st grade), and as we were all watching TV, I couldn’t keep my eyes open, and kept dozing off. For anyone who knows me of late, I have a very difficult time falling asleep, so this was odd for me. I was exhausted, it was just another sign of what my body is enduring, and the toll the chemo is taking on me. It’s been 2 years straight (with a 1 month break) of treatments. My body is crying from pain and exhaustion.

Before I went to sleep Karen and I chatted it up in the kitchen. I love “girl” talk, and she and I are both good listeners (and talkers!). It was great! I had a good night’s sleep, even though I shared my bed with Harley and Bailey for most of the night. I was zonked. The next day (Friday) was a total down day. The boys went out with John to move the boat out of the water, and the girls just hung. Even the pups were mellowing out with us. When the “men” came back, Evan and Johnny went out to toss the football around, and Harley and Bailey started crying and barking to get out there too. They needed to run, and I wanted them to be able to run in their big yard and get out their energy for the ride home. Karen agreed. The boys were out there, they can watch them too. So first I went out with Harley, who ran around and around, fast and faster! Then I let out Bailey to join us, and they played and ran and played, and then….. then…. Harley took off again with Bailey on his tail. Evan and Johnny went after them, Karen ran out too, and there I was, helpless again. Carly went out, John went out, and I just stood there. I hated that feeling, I was frustrated and angry. I thought to take Evan’s car, but couldn’t find the keys. John came running back, and he and I got into the truck to look for them. I have known John a long time, but I never saw this side of him before. He was so aggressive driving around the neighborhood looking for the dogs…. Everyone was looking for them, and I was helpless. Well, Johnny found Harley (who I found out later took off when he saw a deer), and Bailey ran to Karen when she called her in a playful way (good Bailey).

Evan drove me and our pups home. Not one ounce of vomit the whole way. Harley and Bailey both slept the entire trip home. Yay!!!

So, many a lesson learned this Thanksgiving, Harley needs to be knocked out before a long road trip; both of our dogs MUST be leashed when outside; we love spending time with dear friends, especially a holiday; and that my body needs a rest from the chemo.

There is a very fine line between fighting the fight and the quality of life. Of course I want to defeat the beast and be cancer free, but the truth is that ovarian cancer is a “chronic” disease that I will be fighting for the rest of my life. Some oc patients are blessed to beat it and don’t have the same fight as I do. But that has proven not to be the case for me. My body is tired, and in pain. It is screaming to me to please give it a break from the chemo so it can gain strength to fight the fight. I am scheduled for treatment this Tuesday, but will call Dr. S. tomorrow to discuss what to do for now. He is a very fair man, and of course, ultimately it is my choice. But, if he feels I can take a break and start up in January without too much of a setback, then I am going for it! 

I hope everyone had a wonderful Thanksgiving. There is so much to be thankful for; family, friends, health, happiness, love, the homes we live in, the food we eat, the clothes we wear and so on. The list is endless… I am very thankful for the love and support I have to help me fight my fight. I am also so very thankful I am still here to be writing about it. Xoxo  

My “Other” Husband

I am very blessed that I have several angels in my life. Some of them flutter their wings softly around me, others are up in heaven, and then I have those who’s wings flap with such love, support and enthusiasm, I am warmly reminded of their constant presence. Thank you Steven for flapping your wings so loudly. Xoxo  

My husband Frank and I often joke about his “other” Nancy. She works with him at Scholastic Book Fairs, and they work together daily, very closely. However, his “other” Nancy lives in St. Louis, MO. and, although they speak and email several times a day, they have yet to meet.

Steven Eliades

My “other” husband is Steven. He and I are the Co-Founders of The Circle of Strength, Inc.  We talk several times a week, and see each other often. We talk about ideas to help The Circle grow, friends, life, flagels with cream cheese and general gossip! We are very much in sync with each other, and often laugh when we both go to say or do the same thing, which is freakishly often. These things, plus a combination of good work ethics, respect and appreciation for each other are all things that make it work. My two “husband’s” know each other, respect each other, and are friends as well. I am a very lucky woman (wink, wink!).

Steven and I have known each other since Junior High School in Baldwin. He being a year older than I am (hee, hee, he is older!), we had many mutual friends, but not a real direct friendship. From high school we have memories of each other, but again, we were simply connected by the friends each of us had.

As so many have, Steven and I reconnected through Facebook. Back in February of 2010, he reached out to me sending a beautiful private message, asking me if I remembered him (are you kidding me?!). He said that he saw posts and comments on mutual friend’s walls about what I was going through with my cancer, and was amazed at the support that I have. He also loved The Circle of Strength’s Facebook page, and wanted to join to be supportive as well. Over the next several days, we exchanged in depth letters back and forth, catching each other up on our lives. He is a man who has been through so much and chose to share it with me which I appreciated, because all too often, folks tend to hold back sharing things with me, thinking, how could I want to hear their issues, when I am dealing with cancer? Truth be known, it’s nice to get a break from my sh*t and try to be supportive of other’s with theirs!! We all have sh*t, so why shouldn’t yours be as important as mine?

What I didn’t know then, but soon found out was that Steven has the Philanthropist gene deep within him. He approached me about taking “The Circle” to the next level. A fundraiser, with a walk, and to have everyone make a “circle” joining hands and raising them together, all in the name of ovarian cancer.  He asked if I was interested. And, if so, am I up to it. Interested?! Up to it???!!! Hell yeah! Bring it on baby!

I needed this. Steven was a “G-d-sent” to me. I had just resigned from my job, I was battling for the second time and I needed a focus. Developing a Non-for-Profit for ovarian cancer awareness was also a great way to get the word out to all the women out there about this horrific disease known as “The Silent Killer,” reason being that the symptoms are so slight and often overlooked or misdiagnosed. By the time the disease it is recognized it is in the advanced stages, and much more difficult to battle back. We need to raise awareness and funds for medical research so researchers can find a way for early detection, better treatments, and ultimately a cure. I NEEDED TO DO THIS!

The next thing we knew, we were building an event to take place on June 5^th, 2010. We were three and half months away from lift off, and had so much to do. Some really awesome friends of ours jumped on board (Laurie, Elena, Beth and Tony) and we had some great help from others as well (Anmarie, Bonnie, Jen, Lisa, Karen and Kelly, Susie, Red and so many others), and you know what? With a lot of determination and greasy elbows, we made it happen. We established ourselves as a Non-for-Profit in the State of NY, got the permits required to use Baldwin Park, and within that short time, Steven’s dream became a reality.

Being Steven and I had grown up in Baldwin, we felt having the walk in Baldwin Park would draw many of the folks we grew up with to come to our event, as they were coming back home. They would be going full circle! Through Facebook, we advertised, and got the word out about the walk. We set up a website about us and to take donations, and the money started to come in. All of us on the board were amazed. We were really doing this!

The week before the event was rather hairy to say the least! It was crunch time, and we didn’t have many of the tasks done. We had received over 150 raffle prizes that needed to be put together and wrapped, we needed to finalize who was speaking and/or performing and when, and oh lord, what will we do if it rains. OK, to be honest, I was panicked about the possibility of rain since we first talked about it! I am always nervous when it comes to an “outdoor” event.

So the day before the event, Steven and I spent the day together, trying to go over last minute details, our speeches, who was going to run which booth, and so on. Steven has the energy of 10 men and I have the energy of half of one (chemo does that), so we balance each other out. We decided that day, that it is what it is, and look how far we have come. Tomorrow, we will look at as our “dress rehearsal” and learn for next year’s event.

Don't Rain on Our Parade!

The weather forecast for the next day was very, very iffy. As I sat in my car waiting for Steven to drop off his car at the dealer, I was really getting quite uncomfortable hearing the forecast. So, off went the radio and on went Barbra Streisand. LOVE HER! I had on the song “Don’t Rain on My Parade” which is one of my Barbra fav’s… Then it hit me, I was going to add myself to the performance list and lip sync this song the next day. Steven got in the car, and I was nuts about my new idea. I really think he thought I flipped my lid! But the song was perfect in so many ways for me to do, because for me it was about not allowing ovarian cancer to bring me down. And, of course about it not raining on our day! Thank you Steven for agreeing to let me do it (not like I would have let you say no – lol), because it was the greatest feeling for me to just let it rip! Steven and our board members joined me onstage towards the end for a kick line; seriously… The Rockette’s have nothing to worry about!

The Circles - 6/5/2010

Well, it didn’t rain on our parade, but it was extremely windy which we survived. It was a very successful event, where we raised $10,000 to donate to the Ovarian Cancer Research Fund. Everyone had a great time, and Steven’s vision of forming The Circles (survivor circle in the middle, and supporters circle around them) became a reality. The Circles were and still are my favorite part of our walk/fundraisers. It is a time to reflect, be united, pray for a cure and know you are NOT alone.

The Circles - 6/6/2011

TCOS receives a Citation 2011

Today, we continue to rock on and move forward in raising awareness and funds for medical research for ovarian cancer. Steven’s dream is now very much real. We have had two yearly walk/fundraisers and a bowling event, and are currently working on next year’s walk/fundraiser which is going to be completely different then previous years (shhhh, I can’t discuss that yet!). We have also donated more funds to the OCRF, and plan on keeping them as our only beneficiary. We have added some great people to our board who are a pissa and a half. I love them all so much. We have such a great time together planning our events. Each of them brings something else to the table so we all balance each other out with great ideas. We are a family. Steven has given me a very valid way to fight ovarian cancer. Not only for myself, but for every woman out there.

The Board :)

 

Thank you Steven for being you, for reaching out to me and standing by my side. For wanting to help me and all of my oc sisters with this disease known as the “silent killer", as well as getting the word out to help healthy woman know the signs of oc, so they can stay ahead of the game.

You are a true inspiration for me. I am so blessed that you are one of my angels. Love you.

CANCER SUCKS…

I am a firm believer of “when life gives you lemons, make lemonade,” which I very much practice. But this week, I haven’t even had the strength to squeeze the lemons. Chemotherapy is tough, and the longer one has treatment, the more ware and tear on the body. Here I am, just shy of 3 consecutive years of it (with a 7 month break two years ago), and I can’t help but see the deterioration of my own body. It does not help that I am a diabetic either. I look at my hands that are no longer steady and on their leathery looking skin, I can count the mosquito bites from this summer. The scars/scabs are still there. My ankles are in constant pain (being overweight doesn’t help), my left knee has a torn meniscus and arthritis which the chemo exaggerates the pain from. My hips, shoulders, back, and chest all hurt too. I can no longer walk a far distance, and opt to use the motorized scooters with the baskets on the front when I go food shopping (they are kind of fun though). Forget the mall; that scares the crap out of me now, and speaking of crap, chemo has taken a huge toll on my digestive system, the bathroom is now my room of relief! And the latest, my teeth hurt.

Last Tuesday was my day for chemo. Here is what my typical day of chemo is now like: First, the night before and the morning of, I have to take steroids by mouth. Then, the day of Frank drives me into the city to arrive by 9:15, I check in at the concierge. Go to the phlebotomy lab to get my blood taken by finger stick. Go to the eighth floor to see Dr. S. where he examines me, I get dressed, we go into his office to discuss my health, check my finger stick results to make sure my CBC (check for white and red blood cell counts) are good, drug shortages, The Circle of Strength amongst other topics. Sometimes we laugh, sometimes I cry, other times we are in and out but as long as my blood counts are good, it's always to the 5^th floor for my IV infusion by 10:30 AM. The nurses on 5 are amazing. They are the most caring, warm, sensitive, loving people in the world. Can you imagine what they deal with all day? Yet, they are so happy to be helping cancer patients knowing they are making a difference. I often bring in something I baked or made for them just to say “thanks.”

Maria is my main nurse who takes care of me 95% of the time. When she is not there, one of the other nurses will step in. I really don’t care who does, they are all so sweet. So, because my veins are so shot and I cannot deal with having a port (a permanent IV line that is inserted into the chest, which they can access to give the IV and take blood from) Maria comes in, tells me to get settled in, and puts warm packets on my hands to get the veins to come to the surface, then she sends someone else in to get the needle in! It’s so funny, she doesn’t even try to stick me anymore, and I totally respect her for it, because I know it’s just that she really doesn’t want to hurt me.

OK, needle is put in by one of the lovely’s, and we start the saline to flush the IV line and my veins.  Next they take blood to run tests on my organs, and to get the CA-125 count. Then we start the pre meds. Let’s see now… there is the Decotron (steroid to help with nausea and allergic reactions), Pepcid and Aloxy for nausea,  Benedryl (help with allergic reactions and to sleep), Adovan (for nausea and sleep) and Emend which is a 3 day anti nausea drug. These all take about an hour to an hour and a half. Next… we have Carboplatin (chemo), which I am allergic to, so they give it to me in a desensitized state over 5 -6 hours. During this time my wonderful Frank, goes out to get us lunch from where ever I choose (he always asks me to choose what "I" want), and then sits with me the rest of the time. Next… Abraxene (chemo). Abraxene is in the Taxol family, which by the way, I had an allergic reaction to the Taxol 2 treatments ago. The Abraxene takes a little over an hour, then Frank and I pack up and he drives me home. This makes for a very long and tiring day for both of us. I usually get a bed  when we are there, so for me it is comfortable, but Frank gets to sit in a chair, and I make sure to get him a pillow so he can rest too. My Frank is my pillar of strength, he never ever lets me fall, and I thank G-d for him, every day.

I get chemo every 3 weeks. So the first week I feel the worst, the second week I feel better and by the third week, I feel pretty good. Then I go back and start all over again. During the first week, I usually am in bed with a lot of Adovan in my body. The steroids make me VERY jittery, so the Adovan settles me down so I can sleep. There is NO regular coffee during the first week! Also, I get a really bad metallic taste in my mouth from the chemo’s which makes all food and drinks taste horrible, so eating that week is a chore. Keep in mind I am a diabetic, so I have to eat, and as the steroids leave my system, my sugar levels drop at a moment’s notice, so I really have to eat, and everything that goes past my lips is disgusting to me. This is a pretty tough time for me, trying to balance everything out.

But this round…. This round is looking to be the worst one yet. I just can’t seem to feel good. I am trying so hard to focus on dinner with my college sisters on Friday night, then Thanksgiving, then brunch with some dear girlfriends (women I know from all different paths of my life, but they all know each other too!!! It’s so weird!) the following week, which is all really great stuff, but then I get the pangs of pain to bring me back to now.

BUT!!! I am here, right? I am able to write about it, so it’s all good. I always say and truly feel that for as long as the chemo is working, I will fight my ass off to beat the beast…. I will not let it win. Life is too worth living. I love my life. I love my kids, my husband, my family, my doggies, my friends, The Circle, meeting new people and reconnecting with old friends… all of it. I love it so much, I am not ready to leave this world dammit, I still have more life to live. So there!

Mazel Tov Nate!

So far, throughout my illness, I have been very fortunate not to miss any of the “celebratory” functions in our family or with friends, or miss any important events IE: The Circle of Strength events. I had always managed to tweak my chemo schedule one way or another to work around important dates.

In the 3 years I was able to attend, my eldest nephew’s Bar Mitzvah in VA, 3 of my younger cousin’s weddings, one in southern New Jersey, one in San Diego, CA and the most recent one in Philadelphia, PA, and my 30^th High School Reunion, which was an all weekend affair!

These times in life should not be missed. They are full of joy and love, and truly are very good medicine for the soul. What can be so bad about spending time with people you adore, eating great food, and sharing hugs and smiles? It’s all good stuff. And these are priceless memories for me now. Treasures, precious treasures.

I was so lucky with my timing until this weekend. This is my second eldest’s nephew’s Bar Mitzvah weekend. I had my chemo treatment on Tuesday, and my body is wearing down with each round. I simply don’t have the energy I need to have made the trip to VA, or even if I had made it, I would not have felt well enough to enjoy it. And the last thing I would ever want is for people to be concerned about me, when it is Nate’s weekend. It is his time to shine and be the main focus. Not me.

I am so very proud of Nate as he makes his Bar Mitzvah, and steps into manhood. He is such a good kid, as are his brothers and sister. I wish Larry and Sarah (his proud parents) all the very best and a huge congratulations to Nate. I can’t be there physically, but I am there with all of you in spirit.

Mazel Tov!!!
Xoxoxo

Chemo Head!

Ahhhh, the forgetful and mindless “chemo head.” Only those who have truly experienced it know just how frustrating it is. After three years of on and off chemotherapy, I have given up on frustration, and simply accept it. Now, I can laugh at myself about it, but for a long time, it drove me crazy.

When I was first diagnosed with ovarian cancer back in November of 2008, I decided to keep working. My job was important to me, my family, and the company I worked for. We started by bringing my office to me. My computer, just about everything on my desk and a filing cabinet, now were in our dining room. I did what I could to help the company from home, but it wasn’t the same as being in the office. There, I could hear the transactions happening, and knew what was coming to my desk before it got there. Always staying a step ahead was advantageous to my job. When I returned to working in the office, I had been given 2 chemo treatments by then. And it started to happen…

I had no idea what “chemo head” was or that it even existed. I was forgetting things I needed to do, and conversations that had taken place. It was so odd to me. I was always on target, and sharp as a tack. Of course I wasn’t perfect and made my share of mistakes, but what I was experiencing was completely foreign to me. I kept quiet about it, until the time I asked David (my boss) about a money situation with an account, and he gave me the oddest look. He said “Nanci, we just had this conversation 2 days ago, don’t you remember it?” I said “ummmm, no I don’t.” I thought he was kidding with me. Then he repeated what we had discussed, and the light bulb went on! I didn’t know what to say to him, I was truly embarrassed.  I knew then that my secret was out. I told him I didn’t know why I was so forgetful lately, but attributed it to all I was going through, which was a lot.

At my next visit to my oncologist I mentioned it to him saying that I think the stress from what I am going through must be getting to me, even though I wasn’t really feeling stressed. It was then, that I learned I am not alone, and it has a name: “chemo head.” Ohhhhhhh… I get it now! Once I understood what was going on, it angered me. What? I am not going through enough, now I have to add forgetful to my list of issues!??  Great. Just freakin’ great. I am not a happy camper.

When I was at home it didn’t bother me as much as it did when I was at work. I was being paid a generous salary because of my performance and the results I got at my job. I knew David was completely aware of it, although he was/is always a gentleman about it. He would never say anything derogatory to me directly about it, but would give me little friendly reminder’s with a note or some other reference. When I went into remission in April of 2009, my mind came back around, and I seemed to be back on track. With each month I physically and mentally became stronger. Wow! I had beaten cancer, and I can now think straight too!

When the cancer returned in January of 2010, I chose to resign from my job. There were many reasons behind my decision to leave, but mostly it was because I needed to take care of me. I didn’t want the stress of driving an hour to and from work every day, and have the job on my mind 24/7 like I had. I knew if I stayed on, I wouldn’t get the rest that my body and mind needed. Plus, it wouldn’t be fair to David or the company to have me only “half” there. I helped David start the business about 10 years prior. We built it up to a great company, and I had no regrets, but it was time for me to say goodbye.

Because of the respect and love that I had (and still have) for David and Legacy, I stayed on until Gina (who came in and took over many of my responsibilities) knew the jobs inside and out. This took about 6-8 weeks, as there was so much for me to teach her, and she is only one person; there was so much for her take on. I gradually left there, but she always knew I was only a phone call away. I am so thankful she came on board. She is smart and savvy, and doesn’t take crap from anyone! Love that lady!

So here I am now, almost three years from my original diagnosis, and still fighting the fight. I am more forgetful now than I was. I have forgotten so much of my vocabulary, and it really shows in my writing. I keep the words to the basics, because I can’t remember the bigger words to impress you all! Lol..I forget so many conversations I have, appointments I have made (I now write everything down).

About 3 months ago, I forgot to take my “pre-meds” at home for my chemo treatment the next day (glad I wrote that, need to take them now for tomorrow!), and my doctor sent me home. NO PRE MEDS – NO CHEMO…  That really stank, because Frank had taken the day off from work to take me into the city, he couldn’t do it the next day too…  

But it worked out because Evan had the day off from his internship at KJOY, and he took me in to the city and stayed with me that day. He was great about it too. Another day that made his mom, so very proud of him. He sat by my side for 6 plus hours as I got my IV transfusion. He didn’t walk out when the nurse put the needle in my arm, he didn’t leave to go get lunch, we had it delivered, he drove with confidence (his first experience driving in the city) there and back, and made sure all day, that I was comfortable. That I will never “forget.” I love you Evan. xoxo

My Beautiful Sister Sue...

I know this is going to be one of the most difficult posts I will ever blog. I am not sure where to begin or how I will be able to communicate so many of the emotions she or my family went through. But, I will do my best to explain, because she deserves to be understood.

Please note: before I begin, I do not fault anyone for any of the following, and I never understood what my sister was dealing with until I was an adult.

Sue was born on September 21, 1955, a beautiful baby girl with dark hair and big green eyes. To our mom, her head was too big, and there must be something wrong. Then she felt Sue didn’t walk or talk soon enough. Then her grades weren’t high enough (Sue was a very good student). No matter what Sue did, it wasn’t right or good enough for our mom. Sue struggled her whole childhood trying to please a mother, who didn’t have the capability to accept her. When I say “capability” I believe our mom’s mind was altered in some way during the pregnancy. Something had to have happened, because I know my dad well enough to know, he would have only married a very loving woman. To this day I wonder if it was because our mother couldn’t have any more children after she gave birth to Sue, and she resented her for it. I don’t think I will ever know why things between them were the way they were. What I do know for sure, is that their relationship was a broken one from the start, and my sister paid a very big price for it.  Again, I DO NOT fault our mom for what happened. I believe her behavior towards my sister was beyond her own understanding.

Sue was 6 and a half when I came home, so I really don’t remember a whole lot from her early years. I remember her teenage years, including her Bat Mitzvah and Sweet 16. I remember her creativity her love for her friends and music. What I remember the most was the constant arguing between her and our mom. Every little thing turned into a fight. I won’t get into specifics as it is very personal, and not fair to either of them for me to share, but the fighting was bad. When I would tell a friend, they had such a hard time believing me, because when they saw my sister and mom together out of the house, all looked well. Like it has been said “you never know what goes on behind closed doors.”  When I was brought home, my being there didn’t make things any easier for Sue. Our mother clearly favored me over Sue. My sister could bring home a report card full of A’s and mom would say “why aren’t these A plusses?” I could have taken a sh*t on the kitchen floor, and mom would say “what a beautiful color of brown.” Noooo, of course I didn’t poop on the floor, but that is the extreme of the difference in the way our mom treated us. I really didn’t understand it then, but now that I am a mom, my heart breaks for that little girl, who never did anything wrong and only wanted to be wholly loved by her mother.

Finally, Sue had the opportunity to get away from the situation and go to college. Her first year she attended; American University. She wasn’t very happy there so she transferred and finished her undergraduate college years up at SUNY at Binghamton. She met “her” first crush Steve there, who also turned out to be her first heartbreak, as he never came around to feel the same way about her, as she did about him. This was a significant turning point in Sue’s life. This rejection was the straw that broke the camel’s back, and let those G-d damn demons into her mind, body and soul. She started to gain weight, and although she was never obese, she did fluff up a bit for her 5’3” petite body frame. When she reached a certain weight, the demons took over and for the rest of her life she battled with her weight. Not to keep it off, but to keep it on. Sue became Anorexic, and back at that time, Anorexia was an “eating” disorder, not a psychological issue. She was treated with food and heavy caloric drink aids to feed her underweight and malnutritioned body, when what she really needed was serious therapy to help her with her issues. Anorexia is about control and strength. She would be able to cook a meal for our family, or sit with a friend for lunch or whatever and watch everyone around her eat, and not take a morsel of food to her mouth.  She was in control of her.

Sue was diagnosed in later years as a “career anorexic,” meaning she would never get well or bounce back from it, and would be cursed with it for the rest of her life. By the time doctors really understood the illness and how to treat it, it was too late for Sue. The disease had taken over. It manifested itself when she was 19 years old, and Sue passed away from it when she was 39. I can’t imagine living with those demons the way she did for 20 years. Every day for her was struggle, of what she would allow herself to eat, what time to eat, to go food shopping for the perfect 2 oz. of fish, cantaloupe, feta cheese and grapefruit that she allowed herself to consume. Sue also had an addictive personality, she would go through boxes of sweet and low, then switch to bottles/cans of diet soda.

Her mind played tricks on her constantly; she would feel bloated and full after she ate two morsels of food. Her perception of herself in the mirror was completely altered, as if she was looking in a funhouse mirror. But what was really sad, was to see how this awful disease affected her relationships with her family and friends. It made her misconstrue so many things people said or did, it pushed people away. It would exaggerate things in her mind so what would have been a small misunderstanding, spun around her mind where it would take over the rational way of thinking. Sue was tough though, she enjoyed many summers of being a camp counselor. One summer she went out with the hottest guy at camp (that was a real rush for me, because my sis was with the hot guy), Scott.

Mom passed away in 1984, when Sue was 28 years old. This was a huge blow for her, and I believe was what tormented her to the point of hitting rock bottom. My sister’s weight fluctuated from thin to very thin for many years before she hit that low point, when she was rushed to the emergency room as her body just gave out. That time, she made it through, gained some weight and looked pretty good. But that was on the outside. On the inside she felt trapped and uncomfortable.

As I watched her struggle with this disease, I couldn’t deal with it. I know now that I didn’t have the understanding to see what she was dealing with; all I was able to see and know was how difficult she was making my life, and how much she drove me crazy with her nonsense and obsession about food.

Sue didn’t have much of a life when she turned 35. She had a friend or two, and a cat named Sam. She was living in Larchmont, in a small studio apartment that she very rarely left. I was getting married and asked her to be my Maid of Honor, she was my sister and deserved to be by my side as I stepped into the next phase of my life. She was wonderful. She made me a beautiful bridal shower, and went dress shopping with me. I will never forget the day we went to pick up my dress. There we were in the dressing room, she was helping me get into this big white dress, and I looked at her and said “I look forward to being able to do this for you someday” and we both cried. A moment of love to treasure. A moment of sadness knowing her disease would not allow anyone to get close enough to her for marriage.

My biggest regret:

When I became pregnant with Evan, I had to be very careful with my diabetes for a healthy pregnancy. Sue and I would talk on the phone, and every time we would end up fighting. When we would hang up, I would test my sugar level, and from the stress of the call, my levels were always high. For the sake of my baby, I had to cut off communications with her. It was a hard thing to do, and very hard for my dad to have to deal with, but my baby’s and my own health came first. I know this is a horrible thing to say, but I felt so free. Removing this disease from “my” life was like a breath of fresh air, so what started out as stay away for only my pregnancy lasted through way after Evan was born. I wouldn’t even allow her to come to her nephew’s bris. She had no happiness in her life, and I couldn’t even see that, to give in to let her be there with us. Shame, shame on me for being so self centered and selfish. Sue passed away 13 days before Evan turned 1 year old. She never met her nephew, and I will never forgive myself for it. She loved him through pictures that my dad would share with her or stories he would tell her. She was forced by me to love him from a distance. Recently, I expressed my guilt to my dad, and he reminded me that I offered to bring Evan to their home for Sue to come and see him there. I do remember that, but I don’t feel any better for it. That f*cking disease took over me too. I couldn’t deal with seeing her so miserably thin, and the craziness it brought out of her.

Sues last 2 weeks of life were very sad. Her body slowly gave out. When my dad told me the severity of what was going on, I decided enough was enough, and I would go see her. She was in the hospital and was shocked that I came. I barely recognized her. She was so frail, her cheeks were sunken in, she had lost much of her hair, but those beautiful green eyes still gleamed. Evan’s 1^st birthday party was scheduled for the following week, and we talked about her coming. I went to see her in that Westchester hospital almost every day. She was moved up to ICU as her body continued to decline. I brought one of our favorite books from when we were growing up to read to her. It was one of the Nancy Drew series. I would read aloud, and she would lay there with her eyes closed listening. On her last day, her heart had stopped during the night before, but they had revived her. She was close to the end as her 49 LB body was filling up with fluid while it was slowly shutting down. Her skin was “weeping” from all of the fluid (that means the fluid was coming out of the pores). As instructed, I put on latex medical gloves and held her hand as she passed away and left this world. I told her it was ok to go, and that mommy was waiting for her on the other side for her so they could be together in a peaceful and loving eternity….

My poor father who had already buried his first wife was now signing the death papers of his daughter. No parent should ever have to go through burying their child. The nurse came into the room, and explained that the only parts of Sue’s body that could be donated were her eyes, and she asked if we wanted to donate them. My dad left the decision to me, and I said no. They were her only gleam of life, and she deserved to have them with her where ever she may go….

Rest in peace my beautiful sister. I wish you had the opportunity for the healthier and happier life you deserved, and I wish I had the knowledge and understanding then that I do now for what you were going through. You would have met your nephew and been able to love him while you were holding him.