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.  

My Mom…

I am adopted. It is something that I am very proud of. My natural mother could have found a way to abort me, but she didn’t.  I know she was divorced at the time of my birth. I have three natural sisters and my natural (biological) father is Italian. I even know my biological mother’s name. But none of that ever mattered to me. The words “adoptive parents” meant nothing to me. My parents are the people who loved me, gave me a home, a family, raised me, and were always there for me.

After Sue was born, my mom couldn’t have any more children. Six and half years later, they adopted me as an infant. I am not sure of the specifics, but I know my mom was ill for most of my childhood. I feel it is very fair to say, that I never really knew her for who she really was. She was a fighter though. She survived Polio as a child, in her 30’s she had major heart failure, and needed two valves replaced in her heart. They were replaced with pig valves. I remember so clearly hearing my mom’s heart beat. It was so loud, like a thump-thump.  At that time my mother was rushed to the closest hospital, but they weren’t equipped to operate on her heart like she needed. My dad was given a very tough decision to make, to take a HUGE chance to risk her life (he was told she may not make the trip over) by transferring her to NYU in the city where she would get the care she needed or to keep her where she was. He knew if he didn’t go for it, she wouldn’t have lived much longer. His decision to transfer her, gave my mom 20 plus years we thought she would never have.  

During those years, my mom developed diabetes’s and a thyroid problem, amongst some other illnesses. It was one medication after another. I remember vividly all of the various pill bottles with the white caps lined up on the shelf above the kitchen sink. Back then sugar levels were tested by urine samples, so the test strips were in the bathroom, the insulin in the fridge, and the syringes in a kitchen cabinet. I can very much relate to what she went through. With having cancer and being a diabetic there is a constant awareness of what medication do I need to take next, it is a whirl wind. Although, because of the medical advancements with diabetes, I have it much easier than she did. Also, back then medications weren’t as regulated and/or monitored as well as they are now, and all of the combined med’s she was on, changed her personality.  At times, they could make her very tired and other times she could be manic. Some of that had to do with her thyroid condition until it was under control.  

She passed away one week to the day before my 21st birthday. I was up in Buffalo for the weekend visiting my housemates from college. The phone rang at about 7:00 on Saturday morning. Janine answered it. I was sleeping in Gayles room. As soon as she opened the door and said “Nance, it’s your dad” my stomach turned. He told me I needed to come home right away, mom was in the hospital, and she wasn’t doing well. I packed and was rushed to the airport, where I waited on standby to fly home.  I got on the next flight out, but what was 30 minutes of waiting time, felt like 10 hours. Dad and Sue picked me up, and when we got into the car, my dad told me my mom had passed away late the night before. And, all I could say was “so, I am never going to see her again?”…

I do believe things happen for a reason though, because I had opted to leave college in Buffalo the  semester before. I was living at home and was able to spend much more time with her then if I was still up at school. Times in my house could be crazy sometimes, but during those 5 months I was home, things seemed to be somewhat more settled. I am thankful that I came home, and was able to have that time with her. Because, even though I never really knew the real her, she was still my mom, and I loved her very much. Through all the years she drove me nuts (I am referring to my teenage years of course!), when she tried so hard to be a good mom to me, and I pulled away, through all of my confusion growing up with a mom who was in and out of the hospital, and wishing she was at home more. Through her pushing me to do my schoolwork, and me rebelling by barely doing enough to pass by, through the “sex” talk and the make-up instruction.  Through learning how to put on panty hose, and how not to put on too much lipstick… all of it… She was my mom, and through all of her years being so ill, she still did her very best to be there for me.

I feel guilty for pushing her away, just another thing for her to have had to be concerned about.  I am so sorry mom. I love and miss you every day. I like to believe you and Sue are up in heaven in peace. I like to vision you two going shopping to Loehmann’s on Heaven Blvd., and having lunch in Bloomie’s down the block on Angel Road.

Where ever you are, I hope you know, you are remembered and loved, and I wish we had more time together. I love you. XOXOXO

They just know...

I have always loved animals. The furry kind, with cute ears, paws and sometimes tails. I am not into reptiles or fish. Growing up we had a black miniature poodle named Pepe for a while. I always loved the idea of having pets. They give us unconditional love. My pets over the years have been and still are very special to me.

When Evan was almost 5, he had severely broken his foot (4 bones across the arch) in a freak accident at his grandparents’ house. Because the swelling was so severe, he could not be casted for two weeks, and was couch bound with ice every 4-6 hours. Then the cast came on, and my little guy was walking around with a mini walker, so not to put too much weight on it (he looked like a little old man, it was quite funny). He was such a trooper about the whole process, until…….. it was time to take off the cast. There we were, in the exam room with Nana and Grandpa. The Dr. took out the cast cutting saw and, well, Evan freaked. He totally refused to let the Dr. anywhere near him with the saw, crying and fighting… He was petrified. So Nana offered him a new this, a new that if he would let the Dr. take the cast off. NO, NO and NO! Then I whispered something in his ear, and the tears left, a big smile came on his face and the casted foot went on the Dr.’s lap for him to saw off. I told him I would get him a puppy.  J

The very next day, we went to North Shore Animal League (NSAL), Sammi was the first puppy he saw, and he wanted her. He didn’t want to look at any others, he wanted Sammi. So, Sammi came home with us, and the next several months were crazy!! Evan and I (I was separated from his dad by that time) lived in a 2^nd floor garden apartment, with a door that went right into our backyard for her to go to the bathroom. Sammi was a smart girl, and easily trainable. She also had a lot of energy like puppies do and would run circles around the apartment like a nut! Evan and I really enjoyed this new life in our home. She turned into a great dog. She was such a sweet and loving animal. Several years later, when Frank met her, she all of a sudden turned into a BIG MOOCH!!! We hadn’t fed her human food before. Frank felt otherwise, and oooops, the hotdog “fell” off the BBQ, and the rest was history.

When I was first diagnosed, operated on and went through my chemo, Sammi was extra sweet and loving towards me. She wasn’t able to jump on the bed any longer due to her getting up there in years and having severe hip dysplasia, so she come over to my side of the bed, and put her nose up to my face, and check on me and lay on the floor next to me. During the weeks I had treatment, my sugar levels would fluctuate drastically. Sammi actually woke me up a few times from a deep sleep, when my sugar level was dangerously low and I needed to get sugar into my system. She just knew. She stayed by me all of the time when I was down from the chemo. My baby knew.

The kids and I always wanted a second dog, but Frank was adamant about only having one, because we had a cat also. Muffin was his cat from his previous marriage. In her younger years she was a mean girl, but when she was with us, she was old and had simmered down. She and Sammi were never the best of friends, but they respected each other and were able to coexist.

One day in April of 2009, I was having a really bad morning. When I got to my office my boss said I would feel better if I went next door. Eric, who’s office was next door has 2 adorable kids, who I adore, so I said “Why? Are the kids here?” David said “just go there, you will feel better.” Jokingly, I said “what? Is there a puppy there?” Again, he said “just go!”

When I went in there, an adorable Golden Retriever puppy came running over to me. Oh, he was so sweet and I felt so much better! I was in love! As it turned out that there were 3 more of his littermates needing homes from this litter of 11, and all the owners wanted was the cost of the shots the pups had already received. I was thinking, don’t tell me this, I can’t have one, Frank would never go for it, oh, I can’t believe this is happening to me?!!!  I went back to my office, and sat there and thought about it. I decided to ask Frank anyway, because one just never really knows, does one!?? I am so glad I did ask, because before I even finished asking, Frank said “go ahead!” I couldn’t believe my ears, and I questioned him on it. He said “You have been through so much, and this will make you happy. You deserve to be happy, so go for it!!”  I thanked him up and down. I couldn’t believe it!

I called the owners, and met with them on my way home from work. I wanted all 3 puppies, but that was out of the question. So, I picked the one that seemed to be the leader, yet was a lovey dove. On the way home, he threw up all over the back seat of the car. Wonderful, just what I needed. I called ahead to Evan, to please meet me outside and help me bring in packages (ha ha, no packages, just a puppy). The look on Evan’s face was priceless when he saw the pup. And, the first 2 things out of his mouth were: “Is he ours?” and “Does Frank know about this?” LOL!! Frank came home later, and the three of us were in love. Sammi was very accepting to him; Muffin on the other hand, wanted no part of him or anything to about him! We couldn’t post anything about him (still nameless at this point) on Facebook, because we wanted to surprise Brittany the next night when she visited with us. And, surprised she was! When she saw him she let out such a loud scream of excitement, she scared the pup half out of his mind!  Then, as a family, we decided to name him “Harley.”

Harley was 4 months old at the time, and as he grew we saw every day just how smart he is. A real indicator was when he was with us about a week or so and was thirsty. The water bowl was empty. So he picked it up and dropped it in Franks lap. Smart doggie!

When my cancer came back in January of 2010, Harley was just over a year old. But, just like Sammi, during the weeks I had my chemo treatments, there he was, by my side. But he was on the bed, with his head on my belly. It amazed me how sensitive he was at such a young age. So with each treatment, I knew when I got home, my babies would be waiting to stay with me and love me. I was followed from the bed to the kitchen, to the living room, the dining room and even to the bathroom (it was a bit crowded in there!), and back to the bedroom. I must admit, as much as I had before I got ill, my love and admiration for each of them grew, because I never thought of them as them taking care of me, it was me (the mommy) who took care of them.

Sammi passed away on June 16^th of 2011. I miss her every day. She was with us for 12 wonderful years, and never gave us an ounce of trouble. As I am writing this, I am crying from missing her. Her sweetness and unconditional love are deep in my heart and soul forever. Harley was very sad when Sammi left us. In essence, she became his mommy, and they were very close.  

Four weeks later, we went back to NSAL, and adopted Bailey, an 11 week old mutt. She is adorable, fun, energetic and mischievous, and she brings us much happiness and laughter every day. She and Harley bonded beautifully, and has helped him come around from losing Sammi, but she can never take our Sammi’s place, yet, we have lots of love and room in our hearts to love her as much as her own individual.

When I come home from my chemo treatments now, I still have my two babies waiting to stay with me and love me, only now it is Harley and Bailey. They just know.

The Birth of The Circle of Strength

Throughout my first round with “the beast” as my friend Lyn calls it, I was reconnecting with most of my old dear friends from growing up through Facebook. As we caught up with each other’s lives I shared my journey of my cancer with them. Having them come back into my life at that specific time was a true blessing. Their love and support was like no other to me. They knew me my practically my whole life, and we were all very good friends when growing up. I am not talking about a group of 3 or 4 girls, I am talking about a very close knit group of girls and guys. There were about 20 of us. It is very hard to put into words the love that I have for them. They were and still are like brothers and sisters to me.

Sharing my journey was important to me for a several reasons. First, I never felt alone. Never. My friends would send me cards, knit me beautiful scarves, and hats, send me books, flowers or a fruit arrangement. I would get phone calls, and emails and posts and private messages on Facebook, all of the time. What a wonderful feeling. Second, I knew from the questions I was being asked, that many of us are clueless about what a cancer patient really goes through. So I made it so that we could all learn together through my experiences.

During this time, my very close friend Laurie and I, would have the same conversation over and over. She would tell me all of the time, that I am so strong. I would respond by saying “it is not me who is strong alone; it is you and everyone else who keep me strong.” And she would say “no Nanci, it is you who keep us strong.” I would then say, “we keep each other strong, because we all lean on each other like a… Circle of Strength. After the third of forth time of having this conversation, she would say, “I know, I know… we are like a Circle of Strength.

When June of 2009 came around, I was in remission for 2 months. A friend of mine who is a breast cancer survivor was having a fundraiser at a local bar/restaurant to raise money for her team “Speedbumps” for Relay for Life, which until that day, I never heard of. Being there and being part of this great cause, made me feel so good. I wanted to find out more about this Relay for Life thing, and make my own team to raise money. Even though we had teams, we really are on the same team with the same goal… to raise money for medical research to find a cure for cancer. Relay for Life is run by the American Cancer Society, all monies goes to the ACS, and is used for medical research and helping cancer patients. It is a wonderful foundation.

Hummmm, how do I get the ball rolling? What to do, what to do…  What should the team be called? For days I pondered the team’s name, and then it hit me… The Circle of Strength. It was like a “duh” moment! And, so it began!

Another friend of mine Barbara, had offered me to have a fundraiser at the restaurant/ bar she worked at. I agreed to give it a shot. I had shirts made with “The Circle of Strength” and a logo. She and the owner of the place, Derek, were unbelievable. They worked so hard to help us get items to raffle off, put out a great buffet, and the bartenders gave their tips from the night to The Circle. If you’re ever in Baldwin, I highly recommend D.J. Houdek’s place! Great food, great beer, super people. We raised about $1,200 that night! What a great kick off!

Relay was 4 weeks away, and in that time we managed to raise over $5,000. We were the 3^rd team to bring in the highest amount of money! It was a night to never be forgotten. I had the honor of attending the "survivors" dinner and walking the "survivors" lap around the track with my parents, I cried most of the way. Then everyone there (about 1500 people) walked around the track in silence, in memory for those we lost to cancer, as luminated bags were lit around the track, and each bag had a name of a cancer patient (past or present) on it. I shed a lot of tears that night, but I knew it then… there was so much more that I/we can do, and we were on to something! Something very, very good!

And so the shell was starting to break for the birth of what would become a foundation called “The Circle of Strength.”

We always have to have HOPE.