I just spent a week in New York with my boyfriend, Jose, wondering if we were going to make it or not. You know that a vacation away together is the true test of survival for any relationship that has just begun. We had an amazing time and I was surprised that it went so well.
We just came home from a wonderful trip and that following week, I went for a routine colonoscopy, which is not routine for every 38 year old. However, for me, since I had one five years prior and had cancerous polyps removed, it was just routine maintenance for preventative care. No worries, so off I went and had the procedure done. I was in recovery waiting for the doctor to hand me the photo of my colon and tell me all was well, but no, he came in and told me that he needed to send it off to pathology, since he found something, but it was different than before. He told me not to worry, and he should have the results in a week. Well, at that moment, I knew something was wrong, and now all my symptoms that I was having were starting to trigger something in my mind, but I would never guess what I was about to hear.
Four days later, I had just picked up my boys and the phone rang while I was driving, so I answered it on Bluetooth. Now realize that I am new to this technology, so when the doctor started talking and telling me that it was cancer and be glad that it was the good kind, I was trying to figure out how to get him off the Bluetooth so my kids wouldn’t hear anything. All I could do was pull over and run out of the car. The doctor was still talking and he mentioned the word radiation, and at that moment, I heard nothing and comprehended nothing. The tears just started to flow and I didn’t even know where I was for a moment. I said ok, yes, please refer me to an oncologist so I just don’t randomly choose one from the phone book. He said he would be in touch tomorrow.
Well, let's just say that I made another phone call to Jose and asked him to meet me so he could watch my boys because I needed to go do something. We met, and I handed them off and told him to please give me a couple of hours and feed them. I was in a state of shock, literally. My adrenaline was pumping so hard that I didn’t even know what I was doing at that moment. All I know is that I ended up at work and jumped on the computer to google Follicular Lymphoma.
Now keep in mind that you should never, ever google cancer if you were just told you had cancer because all the info that you are going to choose will make you even more depressed and set you off into a downward spiral that death is coming and the main question is “How many years do I have left?” After thinking for one hour and not even remembering if I was typing the right words into the google search engine, I decided to give up and to call my best friend Joey and tell her the news. She was in more shock than me, and I think at that moment, the denial process began.
I went home, got my kids, and told Jose the news, which to this day, says that I didn’t tell him that I had cancer. I think I did but we were both in denial and couldn’t accept the reality of what was spoken. I slept in bed with my boys and we just cuddled all night and passed out. The next day, when 9:00 a.m. rolled around, I called to speak to the doctor and told him that I couldn’t recall anything that he had told me. I asked if he could repeat it all over again and he did so very graciously. The story didn’t change and it was still cancer, but now I wrote it down and had notes. I made a game plan for myself and the first step was to get insurance. Thank you, Obamacare and here I come. I called an agent and signed up and waited 30 days for it to be active.
February 4th came and that was the day that my diagnosis was made official by my oncologist. My oncologist was a woman my age and was very knowledgeable and positive. She told me her game plan and we worked together very quickly to get all the other tests done as fast as possible to see what the extent of the cancer was and how the treatment would go. In a matter of two weeks, I had done four more tests and out of the four, three of them came back positive, so that put me at stage 4 Non-Hodgkin's Lymphoma. The regimen for treatment is R-CHOP chemotherapy, which is not fun at all. I had to endure a bone marrow aspiration test, which came back positive, a small bowel series, which came back negative, and endoscopy, which came back positive, even though my doctor told me that he was 95% sure that it was fatty tissue. I had a biopsy done in my abdomen, which came back positive. Plus, the colonoscopy was positive as well, which got this whole thing started.
The day I did my biopsy was also the day that my port was installed. Having these two back-to-back procedures was tough as well since I had some crazy reaction to tape and the cleaning solution burned my skin and left me in excruciating pain. The next day I was to start chemo, but let's backtrack a little bit to get to that point. The day before my biopsy and port placement was my chemotherapy class, where they go over what to expect, what will happen, side effects, how to cope, and yadda, yadda, yadda.
Me, not being too excited, was very hesitant about this whole thing and asking tons of questions, to the point where the nurse asked me what was wrong, why I was so hesitant. I told her that I felt we were rushing and maybe there was another way, and maybe the phone call would come and say “Oh my God, Linda Curiale, we completely messed up your test results with someone else’s.” Well, that didn’t happen, and what did happen was right after I left that class.
My doctor called me who did the endoscopy and I could tell by his voice that this was not a good call. He apologized and said, “I cannot believe this, and I checked the chart five times before calling, but it came back positive”. I told him not to worry and that it was okay and thanked him for calling. At that moment, I knew I needed to do the chemotherapy and thought it was my sign from God that this was my plan. I asked for a sign and man did I get one. The next day I went to the hospital for my two procedures and before I went in, I called my oncologist and told her that I would be there tomorrow to start my treatment.
This is where my old life ended and I guess my new life began. Everything at that moment was a blur, and to cope, I just numbed myself. I was Linda and I tried very hard to be my old self and the part that was suffering was just a part of me that I never acknowledged. It got me through, and that day when I went in for my first treatment was a moment not to forget. The nurse came over and installed my needle into my port for the first time and then started to administer all the drugs that I was to receive. Now for the first time of getting Rituxan, they give you a tester because you will have side effects and wow, I sure did. I thought I was dying and it was like I was on the edge of being really drunk, to the point of falling you get when you close your eyes and also being super cold like you were left outside in wet clothes and you feel chilled to the bone. I was unaware of what was happening, and all I wanted to do was to get out of the chair and go into the fetal position. The nurse looked at me and asked how I was doing. Ugh, “How does it look like I am doing?” I told them to please disconnect me so I could go run to the bathroom to throw up. Keep in mind that I was in a huge room with people all over getting transfusions.
Yes, you are not alone and there is no way that I wanted to be sick in front of an audience. They stopped the tester and I started to come around and they said we will start this again tomorrow. Wow, thank you for that, and yes, I look forward to doing this all over again. They asked me if I wanted to keep my needle in my chest and I said, yes. There is no way I wanted to be poked again since that hurt like a bitch, and at the same time, I was oblivious and didn’t even know what was going on. My poor mother who was there with me probably didn’t even know what to do. Well, I didn’t want to be by myself and ended up staying at my ex-husband's house with the boys, just in case something happened to me. I slept in bed with Jacob and that little boy made me feel so loved and I felt that everything was going to be okay. I felt bad for Jose, who at the time was in his apartment and I was living with my dad. All I wanted was for him to be there for me, but it just didn’t work out that way.
The next day came and we went off to breakfast and then to treatment. My mom drove me again. Finished the Rituxan and that only took four hours and then it was off for the chemo drugs which took another four hours, and yes, that was a very long day. Sitting in a chair of not knowing what is going to happen or what the outcome will be. I made it through and that is all that matters. My first round down and only five more to go. The countdown had begun and now the fun part was really going to start.
They said the hair will fall out in about two weeks, and man, they were right. It starts coming out in clumps gradually, and then just massively falls out. Then you know it is time to shave it off because it is just so disgusting, falling out all over the place. When the hair falls out like that, you don’t even know who you are anymore. Being a woman, we know it’s just hair, but it’s what makes us, kind of. I thought to myself, okay, I will only let myself cry once over this and laugh at all the other times. At first, I thought it was funny and just cried with joy with tears rolling down my face. However, at that moment when you are in the shower and the water is just hitting your head and the hair is just coming out, you look down and you think, wow that looks like a dead animal. That was the moment when I lost it. I knew that moment came and there was no point in turning back. That’s when it started to sink in like, wow, I am really going through this.
Everyone that you talk to about cancer will tell you some beautiful story about how the family is so supportive and not to worry about losing your hair. It’s just hair and it will grow back, even better and maybe curly. They tell you how their partner or children wanted to share in the experience of shaving their heads in support and they had a party and all this nonsense. It makes you feel warm and cozy inside and I was actually excited to share that moment with my children and let me tell you how that went … not well for Linda. I asked my boys who are 9 and 10 if they wanted to get crew cuts to be like mom and they both looked at me and said NO. They looked at me like I was an alien who just came down to try to abduct their hair.
At the same time, my little one, Jacob, told me that he didn’t want to see me with no hair and to make sure that I wear my wig or a hat. I slowly turned around and went into the bathroom and cried because my beautiful moment didn’t turn out. Once again, I felt all by myself. It took me a while to understand that they are just children. I never told them that I had cancer, but just explained that mommy was sick and needed medicine for the next six months and I would lose my hair. I didn’t want them to know and I didn’t want them to be at school and hear any horror stories. The internet is everywhere and I wanted to protect them as much as possible. They got it and they were great. They were my rocks and they both really stepped up and blossomed into two beautiful little boys and knew just what I needed and when. Trust me, they are still boys and drove me crazy but they were great and I am so proud of them for how they handled everything. And to this day, they are just my little troopers of support.
After the incident with my boys, I needed to go pick up my 15-year-old nephew Michael. I figured he would be a better rock for me and help me through this moment. Keep in mind that when your hair is coming out in clumps, it knots together and all you can do is just pull it out. I threw a hat on and ran out the door. Michael jumped into the car and at this point, I had a splitting headache and I took off my hat. I asked him to pull the knot out and he looked at me and said, “Please Aunt Linda, I don’t want to hurt you.” I said it’s dead and it just needs to be pulled out. Please get the knot out so my headache can go away. He said, "Please put your hat back on because you are scaring me.” I pulled the knot and it came right out and he said “Oh my God, that is so disgusting” and out the window, a chunk of my hair went, along with my dignity at that moment.
Everyone was freaking out around me, and what about me? How come I needed to be so strong and not freak out for what was happening to me? Back home we went and I took a brush to my hair and it came out stroke by stroke and that moment was everlasting. Jose walked in and I asked him if he would shave my head and he looked at me and said yes, but he never came back. I called my brother and he said, “Yes, I will be right there”, and he was. He came over with the clippers and was so excited to get this done that it scared me on how happy he was to do this for me that I said, “No”. That night I was regretting that I didn’t go through with it because you are just covered all the time with flyaways and it feels gross. Finally, that Monday, my friend Theresa came over and buzzed me, and it was great.
I got the sense of control back and it was pretty cool to have a crew cut, and I just embraced it. As I write this, my hair is still growing. Trust me, what everyone says concerning hair loss, it is just hair and when you get out of the shower and it is a 1,2,3 maintenance, there are no complaints about that. I miss it and I can’t wait till it gets longer, but I am embracing what I have and enjoying the stages of transition.
Now it's time for my second round and I had my game face on. However, I had so many side effects from the first round, and the recovery time was two weeks, so it left me only four days of actual good time before it was time to get knocked down again. Round two came and I met with the doctor and went off to the infusion center. I passed out, woke up, and then went home.
Chemo day came and went, and the same thing happened. I went home and was so sick to my stomach that I just curled into a fetal position and hoped for the best to come. Steroids kicked in and the crazy thoughts came and man, when I say crazy, let’s just say the only thing you can focus on is not being crazy. Focus on trying to be as normal as possible. Day five of the steroids and I was a ravenous bull, looking to eat anything, and I mean anything. I was trying to stay healthy while doing the treatments, but all I tasted was the metal in my mouth and my body was craving salt and sugar and I don’t know why. Maybe it’s because the taste was so bad that I wanted anything that had a taste besides metal and medicine. McDonald’s was my savior after treatment days, and fruit salad since my mouth would swell and all I wanted was cold stuff.
Frozen yogurt was my best friend after treatment, and sleep was my lover. A little bit about me is that I worked six days a week and am a full-time mom to two beautiful boys, and am always on the go doing for others. When this hit me, I just took to my sofa like an old pair of sweats, like I was in heaven, and no worries in the world could have bothered me at that moment. I thought I would be suffering because I had never sat still for so long, but it came so naturally to me to do nothing but just lie there with my eyes closed and sleep, and I mean rest. I couldn’t even watch TV or listen to music sometimes because I was so ramped up on the drugs that everything was torture to me. All I wanted was peace and quiet and not be bothered by anything or anyone. I made it through and fuck, now on to round three.
This one was the worst. The ones that followed were actually worse and worse. They say that the drugs build up into your system and they just compound so it does get worse, but these are stories from the nurses and other cancer patients that you bump into and share little tidbits of info. Funny how no knowledge comes from your oncologist.
Things to know about our medical system is that once you are diagnosed with something, please know that you need to be your own advocate on how to get through it. A doctor is just a person with a degree who is only going to tell you what he or she learned in school or is currently reading in a medical journal. Not saying that is wrong, but there is more to the human body than the illness and drugs. There are other ways to heal or to get better or even to cope. Every time I went there, I had to hear that I should take an antidepressant because maybe I am depressed or how to handle my anger issues. I had to explain that I just wanted to be helped to get through this and I was not depressed but just needed to understand what was happening to me. I didn’t want the pills. I just wanted to heal as fast as possible.
A lot of miscommunication between the doctor and patient. I am still questioning some things to this day, but hey, I did not go to medical school, so who am I to question everything. All I know that it is my body and I can say NO, and trust me I have said NO. It is important to question and to say NO. They are not building a house and know where the walls are going. They are using us as a science project and each test will show something else. It is not cut in stone, so we are just little test dummies and the favorite line is that everyone is different and everyone will handle it differently. Well, ain’t that the truth. We all handle things differently!
Now I am done with my treatment, and I am thinking that maybe I should be on the antidepressants. Funny how full circle happens. My doctor is great and I appreciate everything that she has done. I am just venting and working out my frustrations with everything that I have gone through. It is all a process. A process to understand why and how to survive. Cancer did teach me one thing that I am still struggling with because I have always lived life to the fullest and appreciated all that I had. I was lucky to learn that early on. So when all this happened to me, I wasn’t mad or angry or lost my faith in God. I just asked, “Okay I can do this. I am just curious to see what the lesson to be learned will be.”
I figured out that I had lessons for my immediate family around me. It came to me that maybe I will die and I will write each person a letter and be honest and tell them what needed to be changed, and what my life lesson was for them to take with them. I honestly thought that was my gift to people.
Was I sad? Yes, but at the same time, I have a huge sense of peace within me. Even though I don’t want to die, it just comes and goes with this sense of greater purpose. I am all about life’s lessons, and I like to point those lessons out by being open and honest with myself. If we are not open and honest, then how do we actually learn? How do we accept ourselves or how do we grow as a person?
I love meeting people and getting to know them, and I mean really know them. Not necessarily their little stories of their childhood, but the ideas of what they have that makes them tick. I love falling in love. I think it is the best way to get to know someone. It doesn’t have to be a love interest, but falling in love with someone is the connection. It’s that one thing that you share to build that connection and the trust has been shared and built upon, and the relationship begins with no holding back.
Life is too short to hold back. I remember it was after my first treatment and I was sitting outside with my mom and just taking in the spring air and watching the birds fly. We were talking, and I asked her how she was. We had this amazing conversation of open hearts and the connection was there. At that moment, I told her about her biggest life lesson and what my epiphany of what I had just learned. I told her that I am so proud of her, and of the woman, she has become over the past year. I like who she has blossomed into and I admire her for that. It was a beautiful moment.
This now brings me to my ex-husband and teaching him a life lesson of letting go. Rodrigo and I had been together for 15 years before our marriage ended. I was diagnosed with cancer exactly 29 days after our divorce was finalized. A turning point for sure. Did I think I was being punished? No, not really, but definitely an eye-opener for me and what was going to come my way. I left the marriage because I was not happy and I did not want to sacrifice myself anymore and realized that it was for the best. It took me over a year to build up the courage to do this for me and my children. I definitely wanted to make sure that the damage would be minimal for them to recover from when they became adults and seek therapy. A thoughtful process, as I would put it. And then, just like that, it was over.
The divorce came and then my diagnosis followed. At first, we made a connection. Not a love connection, but an understanding that this was real and I was going to need help. At first, he was understanding and even reached out a couple of times. That all changed when Jose told me that he wanted to help me get me through this and that he loved me and wanted to be my support and didn’t want to leave my side. I did give Jose a way out and told him that I wasn’t sure of the outcome or what was going to come and if he wanted to leave, to please go now. He told me that he wouldn’t leave my side and he stayed and he helped me through this in an amazing way.
Trust me, this is not an easy thing for anyone to do, and for a couple who just started a relationship, we had our moments. In the meantime, Rodrigo didn’t get it and I understood where he was coming from and the hurt that he was feeling. However, for me, it was a bigger picture. A picture being drawn for him to live his life to the fullest and to just let go of the hurt and anger. His main fall in life is that he doesn’t let go, and once you start filling your suitcase, it is very hard to get that unpacked, and it just weighs you down in life, all aspects of it. The thing that upset me the most is that he went out of his way to be an ass to me. Even with me in the state that I was in, he would not let anything go and took all the jabs he could get in. This is not for me to bash him, and I would never do that.
But the point is that life is too short, and when you are faced with these difficult decisions or moments that can make a change, please don’t be selfish and let them pass you on by. We have children together and they see everything. It’s hard to notice these things when you are in it and living it, but when you get out of the moment, then you can rethink everything that was happening, and digest the behaviors and see what could have been different. He is a great dad and really picked up on taking care of the boys when needed. But when it came to me, there was no change. It is funny that everyone’s first question is “How is Rodrigo treating you?” We had some talks via text messaging and me pointing out the big picture.
The best is when I thought he would finally get it, and then I get the response, “Yeah, as that sounds like a good idea, and one day maybe I will see it.” It drives me crazy that the lesson just went on by and it took me a while to get over it. I just wanted to beat his head in and open his eyes and say, “Why are you doing this, because the only people you are hurting is yourself and the boys?” But then I realize, "Why is my problem?" I am no longer married to him, and that is the main reason why I left. I just want him to be happy and finally enjoy life the way it is supposed to be.
Now on to intimacy and cancer. Jose and I have not had it easy and it’s like one thing after another, but we make it through. We started dating and it just works. It’s one of those loves that you really can’t explain, but you just know that it is meant to be. He was placed in my life for me to meet him and yes, fall in love with him. We started dating over the summer and took things slowly and then we ended up spending a week in New York. As I said earlier, a trip is the make it or break it and man we made it, and it was amazing. This is where things took a turn and there was no heading back. We came home and life went back to normal.
Then the doctor's appointments came and it was bad news after another. I had no idea how to deal with any of this and I just told him. He became my rock and I told him just, if anything, stay strong for me. That’s all that I needed and he did. Now let’s get to the good stuff and let’s talk about sex, baby. Going through chemo and feeling sick and everything, you are like, “Who thinks about sex?”
Well, I did and I wanted it and not necessarily to just have sex, but to feel normal and to feel close to my loved one and to feel something other than being sick all the time. Now for my partner, he acted like I was contagious. I just said, "It's cancer and you can't catch it.” But he just didn’t feel comfortable. Let’s just say his favorite words were “Babe, I don’t want to hurt you.” I understood yet again and tried to move forward, but I needed what I needed, and plus it's a stress reliever as well. Let’s just say I probably forced him once or twice and that it felt good at the moment, but afterward, I felt bad. He still stayed and he is still here today and probably one day we will sit back and laugh at this, hopefully. It is not easy to lose yourself, plus I was just finding myself again after the divorce, and now being defined by an illness. My coping mechanism wanted to be touched and loved and be intimate with my partner, to feel anything other than what I was feeling, oftentimes, loneliness, and hopelessness.
The other thing that you realize is that words are too hard to express when you are not sure how they will come across. With me being sick, I always felt like I needed to watch what I said when sharing my true feelings. The people around me just didn’t listen. They wanted to offer advice and that is not what I wanted. Just note for anyone in the future that you come across with an illness, we are allowed to vent our fears, our concerns, or even just bullshit. Please just sit there and listen. Not everything has to be turned into a positive antidote or some bible study moment on faith.
Faith did get me out of a rut a few times and trust me, I am a believer and I believe wholeheartedly in the power of prayer. I know that there were millions of prayers going on from all my family members and to all the people that they reached out to. I am very blessed to have such a loving and supportive family in that matter. There was one who I could be honest with and Louie Lou, you did it for me. Everyone that I wanted to express my true feeling with or doubts or even me asking you if God gives you a sign that death is coming and you just listened and guided me in a way that was needed and thank you for that. I really mean it, thank you. Thank you for letting me type my crazy nonsense and you just read it and replied. It’s funny how sometimes the people closest to you are the ones that can’t help you at all. Yet, the ones that are so far away or haven’t been in your life in such a long time can really reach out and make the biggest difference in the world. That was my salvation and I also want to say a huge thank you to my cousins who also came when the time was needed. I called them and vented and they listened to my nonsense and said all the right things that needed me to refocus and get back on that horse to ride off to the finish line of chemo completion.
The idea is to be open and honest and true with your feelings; not only for you to heal or even to survive, but maybe your words are helping others too, and you don’t even know it. My life has always been an open book and I know that I can be a bit much. Some people may think “What is with this girl who holds nothing back?” But I feel like if my story, or just my little point of view, or even my experience can help just one person make it through their day, then that is my good deed for the day, and I feel at peace. You never know what other people are facing and I always wanted to make sure that I could touch just one person a day with a simple smile, laugh, or even a thank you.
Little things can go so far and that is what brings me inner peace and true joy in life. Don’t get me wrong. I am not perfect, and I do have bad days, but just knowing that I give gratitude out is what makes me complete with myself. The finish line is on the horizon and the pain is dwindling down, and it’s not like the time before. The treatments get worse and the countdown starts, but the cycle is the same and the drugs start to take a toll on you mentally. There is only so much a person can take, and man the day after the last prednisone pill, which for me was every Wednesday, your body goes into withdrawal and that downward spiral of despair kicks in, and there is no turning back. Death is on the horizon and all you want to do is stay in a dark room and pray that if it is coming to an end, please don’t make me suffer like I am and just take me so it can be over. And then you are fighting with yourself to stay positive, and if you happen to mention any of the negative thoughts to a close family member, then the positivity comes and you hate them even more. It’s not because you want to die, but you just want that pity party or to be seen with the pain that you are experiencing.
Did I mention too that I would have chemo rash and that there were bumps that would pop up all over my face like a teenage girl hitting puberty all over again? And then the bone pain in your hips and thigh bones? It’s a pain that is deep inside and not like an overworked muscle. Then the pain in the head that compares to having your hair in a ponytail all day and the pressure that is so intense, only to realize that you have no hair and what are you to do besides pop more Sudafed. I was a walking pill-popping machine at some points. For me, I used laughter as the best form of medicine, that and my charming sarcastic ways. Or at least I think I am funny. The point is that if anyone needs any guidance in this crazy world of cancer talk, please feel free to reach out. I can probably answer your question or at least understand what you are experiencing. I made it and today was and is my last treatment. As I explained to my mother, “If the cancer did not go away, I am done with chemotherapy, and I will take my life in my own hands.
Man, she did not want to hear that, but a journey so far traveled and the home plate has just arrived was a party in itself. I celebrated by having my kids make a sign for me and I took them with me. I wanted them to experience it. I was ready for them to hear the “cancer” word and I explained it to them. We made a party of it by taking all my wigs with me and we took photos and had an amazing time. My last treatment and the drugs went in. I dozed off and the boys would make a funny or just be themselves and it made my day. It was a huge accomplishment for me and you know what I am just realizing. This is my beautiful cancer story and yes, finally not with the hair but it is a beautiful story and they were there and got me through it and it was a great day. After treatment, we went to lunch and on our way home. At night, and for the next two weeks, it was the same nightmare of side effects and just getting through, but that day made it for me. This is my beautiful cancer story and as I write this, it’s just an insight into my experience. Everyone is different and will experience it differently. I had to get my doctor's favorite line at least one more time.
What follows is my life after cancer and learning how to find the new normal and going for another round of tests to make sure that I have entered remission. Life is short and life is precious and as cliché, it sounds, it is so true. My loved one says that I am a simple person who wants to live a simple life. He is right. Enjoy the moment and remember that what didn’t kill you this day, there will always be another to make the change and to live the life that you want or ever dreamed.
Now I have to learn that cancer is just a word and not my new life story. I will not be defined by my illness, just by my experience of living through it for the short six months that it lasted. My life will be mine again and I just need to find the strength to realize that and to be able to move forward and heal myself, one day at a time.