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I have spent my life subscribing to the philosophy of Alfred Lord Tennyson;

“Tis better to have loved and lost then to never have loved at all”

Telling myself this has gotten me through some very, very difficult times. I have espoused this same quote to my children, to people close to me  trying to make sense of the loss of a loved one and, also, to friends that were going through very difficult break-ups.

This Mother’s Day morning, I woke up and was hit with such a huge wave of sadness and despair. It’s Mother’s Day, I have no mother. She was taken from me at the way too young age of 66. I no longer have a grandmother, who really helped to raise me when my mother was sick with cancer for the first time. I was only an infant. This was my fourth year that I haven’t had either one of them on this day. I know it’s supposed to get easier and I suppose someday it will but, today, when I got up, it hurt like hell.

It’s really not fair to get a good gauge on how well I’m “moving on”. Back in January, I lost my cousin suddenly (the closest one to my age and, for that fact, probably my closest cousin).  We have been close my whole lie. We grew up together. Just a short day and a half later, my daddy passed away. He was a great man, dad and husband. Of course, I was devastated by both of these losses but, to be honest, I was not really able to grieve them properly. The reason for this is my beautiful cousin, Amy.

I call Amy my cousin because that’s what she was to me. She started dating my cousin, Neal, when they were in college so; I have known her for almost 30 years. We have spent countless hours together; at my house, at family weddings, wedding showers, baby showers, holidays, etc. Amy was diagnosed with breast cancer that had already advanced about two years ago.

Naturally, because of my history of breast cancer, I had a very active role in Amy’s life dealing wither her own diagnosis. I went with her to pick out her wig, before she started chemotherapy, spent hours upon hours talking to her and texting her and Neal; about treatment options, how they were feeling emotionally, how to treat each other and be there for each other during one of the hardest times that they will ever have in their lives, the best way to recover from the surgeries, and about just about every other thing you need to start fighting this devious disease.

Unfortunately for Amy, she had a diagnosis of triple negative breast cancer. One of the most aggressive and one of the hardest to treat. Amy, my love, had to treat almost constantly for the two years she battled. And battle she did. The treatments were brutal, as were the surgeries. She ended up with almost every side effect one can get from chemotherapy, including a very painful condition called neuropathy. When standard chemotherapy wasn’t working, we were all excited when she started a promising trial, only to find that that didn’t work, either. By the end, she was both emotionally and physically exhausted, in an extreme amount of pain, unable to breathe because the cancer had spread primarily to the lung and because of her very low immune system, brought on by the chemotherapy, was having problems with fluid in the lungs. Nothing about the entire ordeal was peaceful and there was no silver lining.

And, let’s not forget, in the midst of all of this, when she could barely walk across a room without needing oxygen, she lost her husband and her uncle (who she was very close to), within a day of each other. Being Amy, there she was, at both services and funerals, sitting with the utmost in grace and dignity, all the while most likely thinking that there was a very good chance that the next time she attended a funeral she would most likely be the one in the casket.

The hardest thing for me to witness during the whole awful week of deaths, funerals and tears was when we went to my cousin’s final resting spot at the Locust Valley Cemetery. I knew that just about a week earlier, Amy had picked this plot for herself – made all of the arrangements. I cannot imagine being 44 and knowing that I was so close to the end of my life that I had to make “final arrangements”. The very thought of it makes me shudder.

At Neal and my father’s services, quite a few people came up to me to tell me how great Amy looked. You see, Amy was a gorgeous woman by anyone’s standards, and even with the extreme pain and breathlessness she was experiencing, and being there to bury her beloved husband and an uncle she loved so very much, she still looked beautiful. I however, having known Amy for so long, could tell that she didn’t look like “herself” but, looked very, very sick.

So, my grief had, in a way, been put off. Placed on the back burner, if you will, due to the worry over Amy’s health, my steadfast promise to be there for her every step of the way, along with my participation in fundraisers for her treatment (which was not covered by insurance), etc.

Well, my beloved Amy passed away at 3:10 in the afternoon this Thursday. Now she is gone. When I woke up this morning it really hit me that they are all gone. I will never get another big bear hug from Neal (he was the best hugger), I will never be able to hear my father’s booming voice and I will never again see Amy’s beautiful smile and hear her lovely chuckle. Never. Ever. Never again. It is now a trifecta of grief and it hurts. It really hurts.

Even more tragic is the fact that my Aunt Angela loved Amy as her own. She was the daughter that she never had. They talked 2-3 times a day, every day. I used to make fun of them because they started to look alike and sound alike. They even had the same mannerisms. For all intents and purposes, my Aunt lost two children in the span of 4 months. Think about that for a minute. I cannot even imagine the pain and the absolute devastation of her heart. I speak with her every day. Every day she makes me so proud. Instead of lying in bed with the covers pulled all the way up, she is working, she is preparing for the birth of yet another grandchild this Wednesday and she is spending time with her family. She is crying – a lot, of course but, she is living. She is so incredibly strong. Then again, she is my mother’s sister. My mother happens to have been the strongest women I have ever known. I come from a long line of strong, courageous women.

And, of course, I was thinking of Amy’s mother today. She lost her little girl. Although she has a son, she does not have another little girl. Amy and Neal were not able to have children and, so, there is not even a little piece of Amy in the form of a grandchild for Amy’s mother to cling to and give her hope. The pain she is feeling is enormous. The huge hole in her heart as a result of Amy’s death will never be filled. My heart aches for her, in a primitive, real and raw way. I pray to God that somehow she is able to find some joy in the rest of her life. After watching her poor daughter suffer and pass away before her eyes will, no doubt, make this very difficult.

As painful as it was for me upon waking this morning, I can’t imagine the pain either of these lovely ladies felt when they opened their eyes. How does one feel when they wake up on Mother’s Day after just losing a child/children? There are no words in the English language to describe it. The really aren’t.

I was looking through some old photo albums for older pictures of Amy so that I could use them to post a status update about her passing. The digital pictures I have are all of Amy in her thirties and early forties, for the most part. I wanted to find some of her with her big eighties hair, with my babies, when she was in her twenties. I was successful in finding what I was looking for. While going through the albums, I came across the pictures from each Christmas spent at Grandma and Grandpa’s house.  There are scores of us, sitting around three tables that had to be pushed together to fit us all. Looking at these pictures, a thought struck me like a bullet through the heart. Six of these beautiful souls were now gone from this earth. They were here, the asked us to pass the gravy, they handed out the presents they had gotten for everyone, they loved, they laughed, they cried, they felt joy and happiness and sadness and they had hopes and dreams for their futures. With the exception of my grandparents, who were in their eighties when they passed, they were far too young to leave us. They had so much more life to live, so many more laughs to have, so many more tears to shed. And, no matter how hard I try, I am having a hard time making sense of it all. There are days that I really feel my faith being tested, like today.

But in looking at the pictures of us all around the table(s), I also saw the faces of all of the wonderful people I still have in my life. Would I give up the love of even one of them so that I will not have to suffer if I lose them?

The answer is a big, resounding NO.

Tragic things will always occur in life. Of that we can be sure. Tragic things will happen no matter how many people I love and accept love from. And, when those tragic things happen, it will be the people I love whose arms I will run to. It will be those people I will cry with and pour my heart out to.

And, it are these people I love – my family and friends – who inspire me, who make me laugh until my stomach hurts and tears are running down my cheeks. They are who I will share my hopes, dreams and fears with. Without them, I wouldn’t be the person I am today and I even dare say that without them, it is possible I wouldn’t still be on this earth. Their constant support and love are what helped me through my heath ordeals.  Like the song said, they loved me through it.

So, at the end of this Mother’s Day, which was so incredibly difficult for not only me, my aunt, Amy’s mother and the far too many women I know who spent their days without a mother, a grandmother, their children, and a woman who was like a mother to them, I say I am so very sorry for your loss and I wish their was something – anything – I could do to take even a small amount of your pain away. 

At the end of this Mother’s Day, my biggest hope is that you spent a beautiful day with your mother, the mother of your children, your grandmother, your aunts, your God Mothers and your God Children. But, not only do I hope that you spent the day with them, I hope that you took in every moment, that you hugged them and kissed them and that you told them how much you loved them. Because tragic things happen, and the truth is you never know what life will throw at you – they could be gone sooner than you think. If you didn’t do that today, it’s not too late. Tomorrow is another day. Just make sure that you do it because remember;

“Tis better to have loved and lost then to never have loved at all.”

Happy Mother’s Day.

xoxo

 

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Cancer is truly the gift that keeps on giving. Whether you are newly diagnosed, in remission, or considered “cured”, it is something that will truly change your life forever.  It will change it in ways that you cannot even imagine if you tried and cannot understand unless you have been sat down and told that you have it.

My cancer diagnosis was way back in 2002. So, technically, I have been cancer free since I had my cancer surgeries that same summer. Unfortunately, though, your cancer journey doesn’t end when the cancer is cut out. As most of you know, for me, it caused the need for over twenty surgeries due to a failed reconstruction, to have to have poison in the form of chemotherapy coursed through my veins, to have radiation shot at my body and to be on a hormone blocking therapy in the form of a pill every day.  Yes, every day I still take a pill to prevent the cancer from returning and cutting my life short. Each and every day, when I raise that pill to my lips, I have to think of my cancer.

Now I’m faced with the problem of the medication finally starting to cause side effects in my body in the form of problems in my uterus.  The medicine I am on, Tamoxifen, can cause a slight increase in the chances of getting uterine cancer. It is just a slight increase, however, and you always have to weigh the benefits with the risks. For me, it was worth it to take the risk in order to stave off the cancer. The standard of care, however, is only ten years.

Because it is the only medication that can be taken when you are pre-menopausal, and my body refuses to go to that menopausal place, I was in a conundrum when I reached the ten year mark. It was unchartered territory. Do I stay on the med and take my chances? Do I have surgery to put me into surgical menopause? At the time (three years ago), the best option seemed to be to stay on the medicine and just monitor the uterus to ensure that no changes were taking place. So, that is what I did.  It made sense for me. Tamoxifen can cause many side effects and I was lucky that the only one that seemed to affect me was a fifteen pound weight gain. No big deal in the grand scheme of things. I know some women who refused tamoxafin because of the side effect of weight gain, and am so sorry to report that more than one of them are no longer here.

So, I continued to swallow that pill each and every day (along with a baby aspirin, to ensure no blood clots). The first two years the uterine sonogram was uneventful. This year, however, was a different story. I had a thickening of the uterine lining, along with polyps and fibroids. I’ve had two procedures to clean all of this out and, as I sit here typing, I can still feel the cramping and pain from the surgery on Monday.

I will have another surgery in January. A big one. A total hysterectomy, along with two hernia repairs from the prior reconstruction surgery. The surgery will last hours and the recovery time will be ten to twelve weeks.  The hernias are painful and don’t look nice although, I don’t think I would have had them repaired if not for the fact that they can actually damage internal organs as they get worse.  I have to have the total hysterectomy so that I can go on another medication to prevent the cancer from coming back (there are about twenty different meds that one can take if they are POST-menopausal). Technically, I don’t need to be on any medication as, being so far out from the original cancer with no recurrence, I am considered “cured” but, how would I ever look at my husband, my kids, my family, my friends if I stopped taking the medication and the cancer returned? I couldn’t live with myself. I am also interested in living as long a life as possible.

So, as much as we like to think that people who have finished their chemotherapy and their radiation, people who are ten or fifteen years out from their initial diagnosis, are “cured”, please remember that even if they are not still facing “treatment”, they are facing mental and emotional challenges for the rest of their lives.

Once you are diagnosed with cancer, you are never the same. You have stared into the abyss and have faced your mortality. Your heart breaks when you hear of someone else being diagnosed because you know that they will never be the same. It’s difficult for you to watch television shows where cancer becomes a story line (Parenthood did it to me and now Ray Donovan is doing the same, just to name a couple).

Every doctor visit is scary, whether it is logical or not. You are never of the mindset that “all will be ok” again. That ignorant bliss has been taken away from you. Waiting for any biopsy is an exercise in fear and angst. Your mind plays funny tricks on you. Any lump or bump on any of your family members, friends and even animals is, until you are told differently, cancerous.

There are some good points, though. When I do get those biopsy results and they are negative, I don’t take it for granted. I dance, I yell, I am happy for a week! When little things that used to really bother me happen, I don’t care as much. No big deal. When I go out with friends, I am so grateful to be there that I always have a good time. I enjoy the little things in life, like a rain shower, the soft licks of my dog on my face and my fireplace glowing . I love fiercely and with my whole heart. I treasure my friends and my family because I know that they can be gone in a heartbeat. I have learned that I have no control over most things – which is huge for me because I have always been a control freak. It is much more relaxing this way.

I am a work in progress. I no longer feel  like every cold is the beginning of the end of my life and I’m pretty confident that I will be here to see my grandchildren but, I don’t take it for granted.

I also think I am a better friend than I would ever have been had I not had cancer. I remember how much I needed people to really listen, to really hear my fears when I was sick and, I definitely listen and am there for people when they need me. I would do just about anything for the people I love, and am rewarded with family and friends that have my back, all the time, no matter what.

I asked for prayers this Sunday for my surgery on Monday and got over two hundred responses. It is truly heartwarming. It makes me feel safe. It makes me feel loved. After the surgery, it took me over four hours to return all of the phone calls, texts, messages, etc. that I received to check on me. Priceless. It was just a small procedure and yet, I was surprised with gifts sent to the house to cheer me up. I am loved.

So, please remember, for those going through cancer now or who have survived cancer in the past. It is never far away from us. We need the constant support and love of those who are around us. It makes a world of difference in our spirits and in our recovery and ability to stay well. When someone with cancer talks to you, feel honored that they trust you with their deepest fears and really listen. Remember when they have a test and make it a point to ask how they made out. Same with doctor visits. Trust me, it will mean the world to them.

We are still people but, we are changed. And, although we would never want our cancer to define us, we do need people to understand that it is a part of us now, ingrained in our DNA, for better or for worse.

Thank you, friends.

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After all of the things I’ve had to do to get through my breast cancer diagnosis in 2002, I would be lying if I said that I was not getting tired. Especially since just when I thought I was done with all of the surgeries (I had twenty since my diagnosis), I found out that I would have to have three more this year. Two are pretty simple medical procedures but, I am scheduled for a double hernia and an old-fashioned (not laparoscopic) total hysterectomy in January.

I had the first of the two smaller medical procedures yesterday and, because I’m “special”, although we didn’t expect to find anything but a thickened uterine wall that would have to be dealt with, there were three large polyps that will have to be removed in the hospital in the next few weeks. Now, luckily, I had a biopsy of the uterine wall the day the sonogram showed the thickening because my kind doctor took pity on me when I started crying, so the chances of those polyps and the rest of the tissue that was taken yesterday being malignant is small since the original biopsy of part of the wall that was removed was benign. But, it led me to have to have another procedure to remove them. In addition, it caused me to have to set up the total hysterectomy because one of the side effects of the only medication I can be on while I am pre-menopausal to prevent the cancer I had from ever coming back is an increased risk of uterine cancer.

As it is, I have already been on the drug three years over the standard of care because, despite the chemo, radiation, Lupron and the drug I’ve been on (tamoxifen), my body refuses to go into menopause. Many women lose their periods after the rigorous chemotherapy I had and, if not, they lost it after being on tamoxifen for two or three years. I believe I am the only woman my oncologist has had who has had to deal with a patient who was still getting regular periods even after ten years of Tamoxafin. After much discussion at my check up after I had been on the drug for ten years, we decided I would stay on it rather than put myself into surgical menopause at only 43 since the only side effect I had ever had was a fifteen pound weight gain. The other effects are much worse; blood clots and, as I mentioned, an increased risk of getting uterine cancer. From years one to ten, the increased risk is small but, there is no data on whether the risk increases after ten years hence, the yearly sonogram that found the uterine wall thickening.

Now, although I hate the fact that I have to take this medication every day (with a baby aspirin to prevent the blood clotting risk referred to above), there was no way I was not going to do anything to be proactive in my cancer not returning. Especially since, like I said, I seem to be “special” and many times, my body does things that go against the “norm”. I wasn’t thrilled about the weight gain, either, which happened just as they said it would (think of it as being permanently in a state of “period bloat”) but, fifteen pounds, to me, was certainly worth my life. There are many women who don’t take the tamoxifen solely due to the weight gain and, I’m sorry to say that I personally know one of those women who is no longer with us. After ten years, you are technically considered “cured” and many people then go about their lives without any treatment but, I’m not taking any chances. I’m so blessed to have so many people in my life who love me and I would never want to be taken from their lives, on top of the fact that I have way too much living, and laughing, to do. Trust me, though, every morning, when I put those little pills in my mouth, it is a reminder that I had cancer. How nice it would be if I could just put it all behind me. Sigh.

So, I am having the surgery to remove the polyps soon and then, will have the total hysterectomy in January. On top of that, due to the cancer reconstruction surgeries I had, I have developed two hernias that need to be removed before they are able to do damage to other organs. I’ve already had to have one hernia surgery for the same reason, back in 2005 and, although it was not one of my longest (12 hours took that record) or even one of the hardest (one time I came home with 8 drains and had I don’t even know how many stitches – how many hundreds), it was the surgery with the hardest recovery. You see, where the hernias are happen to be the very center of my gravity so, I cannot shower, drive, lift, laugh hard, sit up without pain, etcetera for ten to twelve weeks. If you know me, you know that I am fiercely independent and having to have someone drive me anywhere I have to go, having to have my sisters help me wash my hair, having to sit at the edge of the bathtub and wash myself (which takes an excruciating amount of time) and having to have people help me with my work just sucks. However, it is something, for my health, that I will do.

So, I am getting tired, for sure. I’m tired in my heart, I’m tired in my mind and I’m tired in my body.  I’m sick of being afraid of anesthesia (how long will my luck hold out) and I’m sick of feeling fat and unattractive. I’m sick of being scared of test results (because I’m “special” – remember?) Just last summer, I had some symptoms that caused me to have a colonoscopy. Everyone said that at my age, I would be fine. They wouldn’t find anything. Well, they did. Six polyps, all different in size, that is very unusual for a woman in their forties. Now, I’m so glad I had it (and will have to have one once a year for a while) because I will probably not die of colon cancer. They will find the polyps early and remove them before they become cancerous. But, still – really?? On top of it, because of the fact that I have a recurrent staph infection because of one of the surgeries (that one caused me to have a blood transfusion and sepsis), I am unable to do any type of strenuous exercise. It causes my immune system to dip and the staph infection to rear its ugly head. Because of this, I also feel weak.

I was feeling sorry for myself yesterday when I woke up from the procedure and was told that because the polyps were big and “broad based”, I would have to have another procedure in the hospital, and soon. It couldn’t have just been a thickening of the wall that could be cleaned up. No. Because it’s me. And, I know that the doctor told me that she is not worried about malignancy because of the prior biopsy she did but, come on, it’s always there, in the back of your mind, once you have a cancer diagnosis. And, I know I’m beating a dead horse here but, things that doctors don’t expect from other patients seem to happen with me.

I came home and was crampy and exhausted. I texted the people who had been texting me, or who knew I was having the procedure and then, collapsed into bed. I slept pretty much twenty-four hours between the procedure and now. Unfortunately, I had to take a shower and now, doubt I will be able to sleep at all tonight. The cramping has gotten better, though so, that’s good. Paulie Walnuts is with me and we will just stay up cuddling and probably watching “The Sopranos”.

I know that this blog has been pretty technical up to this point and, it was necessary. It was necessary because of what I’m about to say next.

Yes, I’m tired but, I’m still here and going strong. I had a Fourth of July party with sixty of my closest family and friends there and we had such a great time. We laughed so much that my belly hurt the next day. I will go to Florida in October with old friends for our annual Halloween Horror Nights get together. Again, we will laugh and laugh and take so much joy in being together. I am taking a second trip to Aruba with my very best friend in December. We will just lay on floats in the water all day, watch the sunset, and then, go party in the small town. We will laugh, and dance, and talk about old times. We have forty-three years of memories so, we never run out of things to talk about.  We fall into bed, very late, tan, rested, slightly inebriated and completely happy. Then, in April, two of my favorite people in the world are getting married in Vegas and I wouldn’t miss it for the world. A Disney/Universal Family vacation will take place soon after. I can’t wait to see the looks on my nephew’s faces when I see them meet Mickey and Minnie and the Minions. I can’t wait to be on the corniest ride in the world “It’s a Small World” and I can’t wait to go on the roller coasters with my sons and brother in-laws. I always put my head back on those rides, and let the wind whip my hair around and breathe in the air and think “I am living.”

You see, there are lots of scary and hard things in my life but, I try to fill the other space, when those scary things are not happening, with as much love, laughter and joy as I possibly can. I think it’s very important to always have things to look forward to. That’s why I have so many parties; game nights, Rangers parties, holiday parties, BBQs. Sure, my core group is BIG and it’s a lot of work but, I wouldn’t change it for the world. People tell me I’m crazy but, they just don’t understand. These are the moments that keep me going. These are the things that turn the exhaustion into happiness and, most importantly, hope.

Unfortunately, I have a couple of friends who were recently diagnosed with cancer and they have long roads ahead of them but, I’m hoping they read this. Cry when you have to, it’s normal to be scared, it’s perfectly okay to feel like it’s not fair that this is happening to you but, be sure to remember that the reason you are going through all the treatment to make you well so that you can LIVE and not just exist. If you can survive this – and you can – I feel that it is not only a good thing to be happy for your soul but, that it is your responsibility to be happy. God kept you around for a reason. For me, I feel that one of those reasons is to try to inspire others who are going through really tough times to be grateful when you get through those times. To show others that although life is hard, there is so much joy to be had.

My mom used to say , when someone famous would die suddenly, that she never thought she’d outlive them since she had been dealing with cancer since she was in her twenties. But, my mom was sure to live her life to the fullest. She was happy. Sure, she was scared and tired, too but, all in all, she lived in such a way that she didn’t waste a moment of the good times. Anyone who knew her knows this is true. I guess that’s where I get it. The apple doesn’t fall far from the tree, after all.

So, when I’m surrounded by my friends and family and we are all eating, dancing,  drinking, laughing and having a good time, I’m often laughing the most. That’s when I’ve had people tell me “your always so happy”. That always makes me feel so wonderful. For me, it feels like Victory!

I know it is easy to feel despair and sadness in this life, especially with all of the horrible things going on in the world but, take it from me, you can feel empathy and sadness for the people who are affected but, then, try to get away from the news and the T.V. and go and do something that makes you happy. You won’t ever regret it.

xoxo

So, I have to go to my oncologist next month – our oncologist. I have to call and make the appointment. Of course, I am filled with dread.

You see, it was something we did together – this cancer thing. We were diagnosed a year apart and every single viist we made to the oncologist was together. As if there is safety in numbers.

We had our little routine. She would pick me up, wearing pink or red (they made her feel “healthier”).  She would be sipping on a water (which she despised) because it made it easier for them to find a vein for her bloodwork. We would chat. About work, the kids, minor annoyances and things we were looking forward to. During the fifteen to twenty minute car ride, she told me no less than two or three times that “she hated” this shit and that the only time she felt like she had cancer was when she had to to go the doctor.

In any case, aside from surgeries and scans, we were on a schedule of once a month for her. I would also be seen twice a year (every January and July), as I probably will be for the rest of my life.

Like me, Mom had a tendency to talk a lot when she was nervous. Sometimes her face with involunarily tick, under her right eye. It was hard to see her like that but, I wouldn’t be anywhere else. We were so blessed that for ten years, things were always generally good for her.  Every positive thing that the doctor pointed out I was sure to repeat over and over. If the doctor said something like “The spot is small and has not changed since last year”, I would say “See, Mommy? That’s great. Small and unchanged! Remember, cancer is only dangerous if it is growing! That’s awesome!”.

So, most of the time, we left happy and relieved. We would go through Starbucks or Dunkin Donuts and get some coffee. Then would stop at the Northgate Shopping Center. First, we would go to the stationary there. We would get Yankee candles, something for the boys, a gift we might need. After that, we would venture into the deli (two roast beefs on rye, please! Mayo, lettuce, salt and pepper!). Then, Mom would stop at the fresh fruit store and get something to bring back to the office.

The chatting was much more relaxed on the way back home (or the the office, really). As she drove, I called Dad, Al, Chrissy and Lori and gave them the low down. I could hear relief in their voices.

That was that until the following month. My mother was easy but, she was a stickler for not talking about the cancer in between the visits. She would take her pill every day and I would take mine and that was that. We didn’t “live cancer”, we just lived.

And, now I am living without her. And so, it is time for another first. Yeah, we did the first Labor Day BBQ, the first day of school, pumpkin picking, Halloween, Thanksgiving, Hanukkah and Christmas. We did ok. This is different, though. This is something that was just ours. No one elses.

I’m afraid to go without her. I will sit in the waiting room, where we sat together for ten years, all by myself. We shared such heightened emotions in that room – unless you’ve experienced that kind of fear and anticipation, there is no way to put it into words that work. I will miss those looks that used to upset me. The looks from the other patients that said “look at that mother and daughter – how terrible that they are both seeing the doctor”. I will miss holding her bag when she went in to get her finger pricked for the CBC.  “Here, Cole. Just hold this for a minute.” It will be sad when they call just my name and not “Nicole and Elizabeth”. I’m sure that when the doctor sees me for the first time since she passed, he will hug me and I will lose it. And, the same thing with the nurses. They all loved her, of course, like everyone else I know.

We would eventually be walking the opposite way – out of the waiting room into the hallway – and freedom from that hell for another month. And, invariably, we would be on a bit of a high. Our doctor gave my mother (and, by default me and the rest of my family), the greatest gift these past ten years. He honored her wishes over being worried about covering his ass. You see, my mother, although she had Stage IV, was in remission most of the ten years she lived with it. When it did rear it’s ugly head, however, she did not want to know where the spots were, how many there were, or any other details. All she wanted to know was what she had to do to fight it. And, that’s all he told her. He would switch her meds, make her come in between the monthly visits, schedule a scan but, he never, ever scared her. He made her feel safe and well taken care of – and she was. He didn’t even scare her at the end, when he knew it was progressing. He explained that it was, and that he would have to change her meds and be more aggressive but, he never made her feel helpless or hopeless.

That was the best gift her could ever have given us. My mother was spiritual and she was good. It wasn’t that she was terrified of dying. She was afraid of suffering, of dying from cancer. We are so very blessed that she was blissfully unaware of what was going on inside of her, even when she passed. I truly believe that it was divine intervention, because of how good she was and how many people she helped and inspired, that she passed that way.

So, as I’ve said at least a hundred times on this blog alone, I am my mother’s daughter. I will call the doctor Monday, I will go to the doctor next month, I will ask for prayers and I will hope for the best. I will get through this first, too. I will then, in honor of my mother, go home and try not to think about cancer until my next appointment, six months from now.

And maybe, just maybe, I will stop for a roast beef on rye on the way home.

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My beautiful baby boy Jack Joseph, although I know that you are too young to read this yet,  I need to put into words on this, your birthday, just how very much you mean to me and how you saved my life in every way a person can save another person. I hope one day when you read this you will understand just how much your very life has sustained me, given me hope and wisdom, and made me fight, even when I thought there was not another breath in me.

I understand that some of this may be repetitive from a post from Jack’s last birthday. It’s of no matter. I spend every one of Jack’s birthdays reflecting on how he is my angel on earth and how truly blessed I am to be here to spend every one of them, when there was a time I didn’t know if I’d make it to his first.

I found the lump breastfeeding Jack, as many of you know. I was finished and, as I went to put myself back in my bra, I found it. If I wasn’t feeding Jack, I wouldn’t have felt the lump and the story may have ended there. He is, quite literally, my angel on earth.

Jack was just four months old at the time. He went from being a breast fed baby to being a bottle fed baby in just a couple of days. I had a surgery the very next week, with another a week after that, and another a month after that, and another a week after that. Then, I had chemotherapy for six months. The second type of chemo made my legs so painful that I couldn’t even stand. After that followed six weeks of radiation – every day for six weeks. I was so exhausted that I felt like I was sleeping standing up.

There were many times I couldn’t lift Jack , for long periods of time, in his first year. He started crawling at four and a half months in order to keep up with me as I moved around the house. He adapted to my situation. My grandparents stayed for days at a time to help, my family was constantly in and out and Jack became known as the comfort baby. You see, as upset as I was , so was everyone else around me.  It was a dark time and as much as everyone tried to hold it together, there were times it was just impossible. Those were the times when Jack would get scooped up, and smothered with kisses and hugs, which he returned in kind.

He was constantly smiling. He was such a happy baby. It was almost as if God was working through him to alleviate any of the guilt I may have felt for giving him the kind of first year he had. He never seemed to mind that there was always something going on, always someone in his house, always a bandage, or a drain, or a bald head to contend with. He just went with the flow.

Jack is now a strong, beautiful, popular eleven year old. He makes friends easily and is the first one to approach a new kid in school and invite him to sit at his table for lunch. He is a kind soul who, if he knows you are not feeling well, will come over and give you a soft kiss on the forehead. He will ask if I want anything when he goes to the kitchen to get a drink, he will help me clean up after parties (and Lord knows that happens often enough).  He senses that I may not be as strong as some of his other friends’ moms and, without making me feel insecure or guilty, just helps me. I love him more than words can say.

There are two things that come to mind when I think of Jack. One is that he is the epitome of “what doesn’t kill you makes you stronger”. He may not have had the typical “easy” early childhood, as much as we tried to shield him from what was happening but, at the same time, I truly believed it helped to make him such a strong and independent little soul.

Next is the fact that he fits in with the history of Marines in his family. His great grandfather was at Iwo Jima and his father was also a Marine. As some of you might know, their motto is Improvise, Adapt and Overcome. Jack learned to do this at an early age and I think it will serve him well his entire life.

Sometimes, when my friends are upset about things going on in their lives (maybe a divorce, or they are having trouble conceiving and may have to consider adoption, etc.) I tell them that even though their lives may not look like what they imagined them to when they were “imagining “ what their lives would look like, they can still be wonderful and filled with joy they could have never even imagined.

I count my years of survivorship with how old my little boy, Jack, is. In a way, we share the same birthday. I gave birth to him and he is eleven. He helped me in my rebirth and I am, in some ways, eleven, as well.

Happy, happy birthday, my little angel!

Love,

Mommy

I’ve learned the past few weeks of quite a few people facing pretty serious health issues. The kind of issues that, if not fought vigorously, could be fatal. Of course, I am always saddened, angered and frustrated when I hear of news like this. Part of it is selfish. I long for the days when I could be like much of the population, who having not gone through a serious health issue of their own, will most likely hear the news, think to themselves “that’s too bad but, I’m glad it’s not me or my family” and then, pretty much go about their days. It is not their faults. It’s human nature. Until you have gone through something, it is very hard to really and truly be able to empathize with others going through trials and struggles.

I know this from experience. When I was first diagnosed, there were certain people who would react just like I’ve outlined above. They would go through the motions of asking me how I was doing. I would tell them, “Oh, I have a scan Monday and then, start my second round of chemotherapy on Tuesday.” I would see these same people Monday, Tuesday, Wednesday (you get the idea). More often than not, they wouldn’t ask me how the scan went, how the chemo went, or anything of the like.  Wrapped up in their own lives, as we so often are, they don’t remember to follow up to see how you actually made out. I have noticed, though, that some of these people, in the past ten years since I have been diagnosed, have had really serious things happen to them. It’s only then that they remember to follow up, to really and truly begin to understand how important it is to not only ask “how are you?” or to feel sorry for me. It is the ability to really listen to what I am saying and keep it with you so that you can remember to ask me how I did with a test, a procedure, so that you can think to yourself, Nicole had a chemo Thursday, let me see if she needs some help with the kids over the weekend.

I write this because, like I said, I have heard of quite a few people who are just wrapping their hands and getting ready to put the gloves on and start fighting. Maybe, through this blog, those people who would ordinarily not think to go the step further or complete the follow up or however you want to put it, will do so.

Remember, many people who are diagnosed with an illness are already feeling so vulnerable and weak and betrayed by their body, they will do anything they can to try and make themselves feel like they don’t need help. They are in denial. They absolutely need help; whether it is a gift certificate for a dinner, for a mani/pedi, a ride to the doctor, homemade chicken soup, a phone call to crack jokes and cheer them up, an offer to bring over a nice big cup of Starbucks and a movie, an offer to pick up a prescription, to help them clean the house, to take the kids for the day so that they can rest or spend time with their significant other. There are an unbelievable amount of things that you can do to help someone who is not one hundred percent medically. You can do it without making them feel helpless or inadequate.

Don’t make them feel like you feel sorry for them. What worked for me is when people would say, at my hesitation to accept the help, “you would do it for me, wouldn’t you?”. I knew that this was true. It made it easier to accept. An easier pill to swallow, if you will.

I hope that my friends and family going through these health trials will come out, even stronger than ever, on the other side. Until then, help them. Despite what they may say, they will really, really need it.

I will be forty two in just a few short weeks. Forty two. This also happens to be the tenth year of my survival after diagnosis.

I make this point for a very obvious reason. If you told me when I was twenty nine that forty two was only thirteen years away, I would have cringed. Forty two? That’s like middle aged. That’s like OLD. Now, I LOVE forty two, just as I loved forty, and forty one and will love fifty and sixty and, God Willing, eighty. Not sure about ninety. The jury is still out on that one.

That’s what survivorship gives you, if you are lucky enough, and smart enough, to grab it. Perspective.

I hear people complain about their kids, and how they drive them crazy. I join in, I’ll admit. There is a difference, though. A difference in the “tone” of the complaining. I don’t know how to describe it except for that is “complaining mixed with joy”. I am so filled with joy at the fact that I am here for my kids to drive crazy that, even when they are, I can’t conjure up the kind of anger that many of my peers can.

I see people’s posts about going to the gym, going to the gym, going to the gym. I get it. People want to be in shape. In my heart I believe that it is 20 percent about health and 80 percent about looking good. I am not against this, as a concept. As a matter of fact, I am currently on a diet. I’d like to lose about twenty pounds. But, guess what? It’s not even close to a top priority in my life. I have lost things that no amount of running, or weight lifting, or working out will ever give me back. I have learned to love myself for who I am, and not for what I look like. I am always astounded when people say to me, “I swear, I wouldn’t even know that you had cancer and all of those surgeries.” I am so profoundly changed physically that I feel that they can’t really mean it. What I have to remember is that most of the changes are changes that only I can see, and that my spirit and my personality is what they are seeing. It is what is coming through. So, as long as I am not at a point where my health is in jeopardy, I would much rather spend my time doing things I enjoy than stressing about getting to the gym every day.

Some of my friends are going into menopause. I know, because they tell me. About their symptoms and the hot flashes and the moodiness, etc. etc. First of all, been there, done that, as many breast cancer survivors will tell you. I had the added pleasure of going from being pregnant to being in menopause all in a matter of five months. That’s a ride NO woman wants to take, believe me! Talk about mood swings. My husband actually called my oncologist because he really felt as though there was an invasion of the body snatchers situation going on.

As  a short explanation, I was raging with hormones before my baby was born and immediately after, while I was breast feeding. I was diagnosed at four months with estrogen positive cancer. That meant, I would have to have hormonal therapies that put me into immediate menopause. Thus, the huge drop in hormones within just a few months.

Now, it did suck, I won’t lie. Thankfully, when I was done with my treatment, I went back to “normal” and my cycles picked back up right where they left off. I know that menopause is coming in the next few years, though. And, here’s the thing, I can only experience it again if I am ALIVE. So, I will take it. I will take the hot flashes, the weight gain, the night sweats. I will take the mood swings (poor Al) and the bone density tests and everything else that comes with menopause because I will be grateful to be here to experience it.

I sometimes feel like a broken record here but, when all of these milestones happen to me (and just the fact that I count each birthday as a milestone should tell you something), I can’t help but to share the things that I have learned from this hellish experience of mine.

I guess it all boils down to this. One day you will die. Until then, don’t stop living.

 Fill your days up with things that you enjoy. Surround yourself with your friends and with your family. Open your house to people, celebrate birthdays and holidays and sunny days and Thursdays. Eat cake. Go in the ocean, even if it’s a little cold. Spend your money. Go on vacations, buy stupid souviniers, spend nine dollars on a hot dog at a Yankee game. Snuggle and cuddle and let the dog on the bed. When someone says “ you look great” say “thank you!”.  Drink good wine, eat good food, and drive a convertible at least once, even if you have to rent it. Have sex, even when you have a headache. Laugh as hard as you can, as often as you can (Thank you Lori and Chrissy), tell people you love them, even if they don’t say it back. Go to the movies, don’t wait for them to come out on DVD, and sing Karaoke like you are a rock star. Go to a Halloween party dressed as a Giant Shark, and not worry that you will look like a giant fool.

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And, no matter what age you are turning this year, no matter when, I wish you a very happy birthday.

I felt guilty for being alive today.

There is a new person in my life, who I had only met one other time, and who I like very much. I spent some time with him today.  After taking care of business, we were chatting.

He looked at the photographs in my office and commented on the one of me, Al, Michael and Jack with the dolphins at Atlantis. He told me that he goes there once a year. “This year will be bittersweet”, he said.

I asked why.

Because it was the first time he was going since his daughter died last October, he said, from breast cancer. 

She was diagnosed at 32 with Stage IV. It was never good. It never got better.

She was just 32 when she was diagnosed. She had two children at the time. Two little girls. One was just a year old.

The similarities were obvious. I was diagnosed at 31. I had two small children. Two little boys.  One was just four months old.

Since my diagnosis, I have had twenty surgeries, drains, chemotherapy, radiation, hormonal therapies, shots, pills, swelling, baldness, terror, sores in my mouth, high fevers, rashes, eyelashes growing in backwards, lost nails, pain, numbness, terror, night sweats, pain meds, anti anxiety meds, terror, recurrent infections, weight gain, missed school functions, missed work functions, embarrassment and terror.

So did she.

 From what I learned today, she also made sure that she lived, even while going through all of the above. She went on vacations, she did things with her family, she did everything she was physically capable of doing. She didn’t waste any of her precious time. I felt such a connection to this girl that I never met. I told her father that I, too, had gone to Disney with radiation burns on my neck and a bald head that hurt (hair hurts when it falls out). I told him that we would do what we could and just bring a wheelchair with us.

He shared with me. And, I’m glad he did. I shared with him. I’m also glad about that.

Even though it was just the second time we met, we kissed each other good bye. I hope that meeting me didn’t hurt him too much. I hope that it wasn’t too painful to look at me and think to himself “why did this girl survive and not my daughter?”. He probably did, because that’s what I thought to myself.

I cried a little when he left. I tried not to but, I couldn’t help it. He may have cried on the way home. I’ll never know.

I felt guilty for being alive today. I feel bad that she is gone. I feel bad for her parents, her sister and brother, her husband and her children. I feel bad about all the crap she had to go through and all of the fear that I’m sure she felt. 

At the end of the day, I went through what I went through, and got life. She went through the same (and worse) and at the end of her journey, her life was gone.

She was diagnosed at 32. She died at 36. And, even though I’ve never met her, I love her.

I will pray tonight for her family and her friends.

I will also pray that when I wake up tomorrow, I feel more lucky than guilty.

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Ten years ago, at this very moment, my life was forever changed. Changed by a little lump. It wasn’t more than the size of a pebble. I remember the moment I found it. As I was adjusting my bra (I had been feeding my four month old baby), my fingers grazed over it. My stomach lurched. For most breastfeeding moms, the first thought would have most likely been a clogged milk duct. I, however, had a reason to be concerned. My mother had breast cancer when I was in college.

Al was outside, working on putting up a new fence with his brother and a friend. The next day was Father’s day. I debated saying anything to him. Until they were finished and Al came inside and showered, I had felt it at least a hundred more times. Trying not to get frantic, I gave Michael, who was only three at the time, a bath and put him to bed. The baby was down for the night. When Al got out of the shower, I showed him. Made him feel it. I could see in his face that look that I would come to know so well. Desperate to make me feel comforted, he would smile and tell me he thought it was fine. But, the smile was tight. It did not reach his eyes. I could tell he was scared. And, so was I.

Of course, it was a Saturday so, I could do nothing until Monday morning. I did my best to keep a positive attitude the next day. I spent Father’s Day at my mother’s with my grandfather, my father and Al.  I let my mother and my sisters feel the lump and said reassuring things that I didn’t really believe. Things like “I’m sure it’s nothing.” “It’s probably a clogged milk duct”. “It feels like it moves around so, I bet it’s a cyst.” The truth is, that day seemed to move at a snail’s pace. All I could think about was calling my doctor in the morning and all I could do was pray that he would tell me that it was, indeed, nothing to worry about. That it WAS one of those benign things that I tried to convince everyone else it was. Honestly, though, I never had a good feeling about it. Not when I found the lump. Not the next day when I tried to put on a happy face for Father’s Day and not Monday morning when I called the doctor and made the appointment to come in later that day.

When I went to the appointment, I tried and summon up some hope. I smiled and chatted and talked about how the kids were doing. I thought to myself that it was doubly sad to have to be here for something like this when I had just been here four months earlier for my last check up before Jack was born.

After examining me,  I was told that although it was most likely a cyst, I should follow up with a sonogram.  My heart sank. This was not the “It’s nothing – just a clogged milk duct” kind of response I was hoping for.

The rest is history. In a flurry of doctor visits, tests, anesthesia, surgeries, chemotherapy, radiation and medication, I went through the BIG C experience.

I recently found an old item I submitted for the Young Survivor’s Coalition and it made me so sad. I was so naïve. In denial, really.  Here is an excerpt.

So, here I am – my surgeries have healed beautifully. I have already finished with the A/C chemo with no real side effects to speak of except the loss of my hair, which will grow back. I’ve made it through 2 of the 4 taxotere chemos. Then, six weeks of radiation (ten minutes a day – Monday through Friday) and then the good old Tamoxifen and Lupron.

I’m winning!!! All diagnostic tests are showing that the cancer has not spread anywhere else – I feel good that I am doing all of this treatment to prevent it from ever getting me again!!!!

My children are fine, my husband is doing really well, and honestly, I feel great!!! Oh, sure, I have my moments but, all in all, I feel like I will beat this thing and I never before looked at life as openly and felt it as beautifully, as I feel it now!!

Docs even tell me that studies are saying great things about getting pregnant after breast cancer so, hopefully when this treatment is over, I can even go down that road (you know the old story – 2 boys- I have to try one more time for the girl!!!)

This excerpt brings back all of the memories of trying so hard to stay positive. It was devastating for me to lose my hair. The taxoteres were extremely difficult for me and caused me a lot of pain. The radiation was exhausting and caused burns on my chest and neck. The “good old” tamoxafin caused me to gain fifteen pounds in three months and the lupron put me into immediate menopause. As far as the pregnancy thing goes, that was probably the hardest. I had planned on having three children and so, to be told by my doctor that it would be dangerous for me, when we finally did talk, was especially hard.

And, at this time, I had not even had the reconstructive surgery that almost killed me, or any of the twelve or so surgeries (I’ve lost count) that were required to heal me from that disaster.

So, as this day approached, I thought that it would be a day that was celebratory. The painful truth is, though, that like anything else having to do with this disease, what you expect is not always what you get.

Instead of feeling that way, I am feeling uneasy, sad, and melancholy. And, that makes me feel guilty. That makes me feel ungrateful. I know that the further away I am from the initial diagnosis, the less the chances are that I will have a recurrence. I know that everything I wished for with regard to being here to see the kids hit their milestones has come true. I know that I could be dead, let’s face it, and I am still here.

I also know that my entire thirties was spent dealing with disease, and surgeries, and loss. I know that I will never, ever, no matter how far from the diagnosis I am, feel completely at ease again. I will never lie down at night completely at peace. There will always be a small part of me that worries that there is something going on in my body that I am unaware of. That could take me out. That could take a mother away from my kids, a wife away from my husband, a sister away from her sisters, a daughter away from her parents.

My physical pain is also a daily reminder of what I have gone through. No matter how I try, I always mourn a little for the physical parts of me that were lost, or changed, forever.

And so, here I sit on the very day ten years ago that my life was changed. And, while it is true that I have not been feeling celebratory, as I expected, I am glad I made this entry.

I did it because I thought it was serve the very purpose that it is serving. By sharing this all with you, I am starting to feel lighter. And, I am remembering some very important things.

I also grew a successful business in my thirties. I am partially responsible for employing twenty or so employees, supplying them with health benefits and a nice place to go and make a living every day.

I watched my children go from babies to little people in my thirties. Wonderful people who surprise and delight me every single day.  At least, when they are not driving me crazy. I don’t take them for granted.

I have gone on vacations, thrown parties, opened my house to family and friends. I have an awesome Mustang and a beautiful new pool. I believe in spending the money I earn and in not putting off experiences because it’s “not the right time”.

I have been there for other people going through cancer and have tried to counsel them the best I could. I have tried to give them hope and support and just be a shoulder to cry on. I did this despite it bringing up painful memories for me. I did it with my full heart.

I am tougher than I ever knew I was and my heart is bigger than I ever knew it was.

I have laughed more than I have cried, I have gained more than I have lost. I have loved more than I have hated and I have appreciated more than I have resented. I have learned that life is hard but, I have continued in my belief that it is worth it.

And so, my friends, I am now feeling a little more like celebrating. Who knows? Maybe in ten years from now I will read this and think that I was naïve and in denial But, bottom line is, I truly believe that my ability to turn my negative thoughts into positive ones is what got me this far – along with the love of my family and friends (a big thank you to you all) and a huge dose of faith.

I am wishing myself a Happy Survivor Birthday. Ten Years. I bet you know what my Birthday wish is!

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