Cathy

3ec3623d626ace65aa61e5bb4ba9d9a1My friend is gone. I’ve said this to myself repeatedly the past few days, and it doesn’t sink in.

I met Cathy through Terri, a mutual friend, in January 2011. Terri had suggested I reach out to Cathy because Cathy had been diagnosed with BC just a few months before me. In fact, she was still undergoing treatments when I started my nightmare. Terri felt we would be good support for each other. And she was right.

Hey Rebecca. I am doing OK. Feeling much better today. You can call me tonight or tomorrow night after 8:30 and we can talk. I have been thinking about u all week.

You better believe Cathy thought of me all week. It’s what we patients do. We know how lonely and scary this experience can be. We take it personally and hope to overcome the fear just by being there for one another.

Cathy was a dental hygienist. My doctor had recommended I get a cleaning prior to chemotherapy. I asked Cathy if she could do it for me. She said yes, but with one condition:

Just don’t throw up on me.”

She knew how nervous my stomach could get when it came to medical procedures – even the simplest kinds. She was aware I had thrown up on doctors before. But I never threw up on Cathy.

I recall how difficult it was for me to cope with my cancer diagnosis, especially at the beginning. My mind traveled to dark places – it still does. And Cathy always had comforting words to say in order to shine some light.

My mother always tells me this. No one knows what life will bring. We have to live one day to the next. We have cancer but many people who never worry about cancer will die way before us. You must keep going. Try to keep as much of a normal lifestyle as possible. Rest when you have to but don’t sulk.”

Cathy knew how to keep things level with me. She would point out when I was being irrational about my health — because, I admit, I can be sometimes — and when it was normal to have a moment of fear. She also allowed me to be me, which was one reason why I was so appreciative of her.  She understood where I came from because she could relate.

I specifically recall that time I had this pain by my liver that wouldn’t go away for months. I had the examinations done, the sonogram, and eventually the MRI. I got lucky that all was clear but I still had doubts. We hold on to the good news, but the fear never fully goes away. I told Cathy, “what if the MRI isn’t enough?”

And Cathy responded, “Lol. Spoken like a true cancer survivor, lol. I know what you mean.”

It’s so important for us patients to feel acknowledged when we express our fears, and often other patients are the only ones who can give us that response.

During treatments, Cathy and I would speak for hours on the phone. I would tell her about my side effects and she would always have some tips for me.

Be sure to chew on ice chips during your chemo infusions. It helped me prevent mouth soresand don’t overeat…remember to move! Go outside for walks…Take those constipation pills…Try doing normal daily-life activities…Rest…”

Cathy wasn’t only a friend, but in a way she was my mentor too. Someone I could lean on for almost anything. I looked up to her and respected her for all she had overcome. Cathy was also a very kind soul. And beautiful.

Eventually, both Cathy and I finished treatments, except for the hormone therapy we both had to take as a preventive measure. We were relieved to be done with chemo and radiation. But we also knew that we were not finished with cancer, although people wanted to believe we were. And boy, were we glad to have each other to tell things we couldn’t easily express to anyone else.

Survivorship became another set of challenges. The follow-up appointments made us both nervous but she was always there for me. I was there for her too.

“Good morning. You will do great. Let me know when done. Xoxo”

And also while waiting for those test results.

“Breathe. Prayers coming your way. I am sure you are fine but until you hear those words. Xoxo”

Cathy and I exchanged a lot of personal details about our lives, including our fears. Cathy loved her family so much. We laughed. We cried. We even had a plan to start our own TV show called, “The Cancer Talk”. It was supposed to be about situations patients go through that no one else wants to hear about because it’s just too heavy to deal with. It was supposed to be about the reality/facts of living with this disease. We also realized the show would have had very low ratings because our society is not interested in REAL reality shows.

Things seemed to be going well with both of our health. There were a few scares, but overall, we were doing alright. We tried living our lives as normally as we possibly could. And there were more good days then bad days.

Until one day, I received a text from Cathy that there was an “incidental finding” during a pre-op procedure. I thought that perhaps it was related to radiation scarring. Or one of those annoying scares she had previously gone through. But I was wrong. This turned out to be the beginning of a series of new problems in Cathy’s life. She did not get a break. And I was not able to help her the way she helped me.

I can’t believe that after all these years they can’t really help people w stage 4. Is there a chance for remission. Long term remission? Do I pray for that? Do I just pray for stability?”

I did not have the answers for Cathy. And no one else did either because there is not enough research funding for metastatic breast cancer.

I felt angry. Scared. Confused. Sad. I still am. I did not understand why this was happening to my friend. Yes, I am aware it happens all the time, to so many people (to 30% of breast cancer patients, at least). But I believed, in my heart, she was going to be OK. I really wanted her to be well. For her two children. Her husband. Her family. For me.

One thing that made it difficult is that I was not able to fully understand her new diagnosis. I tried. I read. I looked up information on clinical trials. I reached out to online friends who are now stage 4 to try to connect them with her. But no matter how much I wanted to help her, it always felt like I was failing her. We were no longer dealing with early stage. Metastatic breast cancer is something completely different. She needed some hope.

At times, I felt like I was overwhelming her. I decided to give her some space to allow her to breathe. But Cathy was still my friend. There was no way her new diagnosis was going to get in the way of our friendship. She would often reach out to me instead.

“Text me. Don’t be silly. Miss you. I’ve been so busy getting kids back to school schedule.”

Still, I would feel guilty whenever I would express “normal” life frustrations to Cathy. But Cathy appreciated being treated like a normal person, because she was.

“xoxo. Don’t feel bad to vent. My problems don’t outweigh yours. We have to find a way to live.”

Now, I need to find a way to cope without you in my life, Cathy.

Let me explain what Cathy represented to me so you can all understand me:

When I was originally diagnosed, I felt like I was left inside this really dark room. I kept hearing voices coming from different directions of this room, people trying to help me. However, the room still felt dark despite all the support that came my way. Then suddenly, I saw glimmers of light. These lights represented patients who had walked my path and who were willing to guide me through the darkness. There’s nothing that can compare to the support of other patients (and I am not saying other types of support aren’t needed or don’t help). Among those lights, Cathy was the brightest of them all, because we weren’t just two patients trying to seek support. We were also friends. Now, with Cathy gone, I feel like my room just got a little darker. And as I sit here in my darker room, I’m hoping that the lights that are left never go off.

This summer, Cathy and I had not been in communication that much, and somehow I felt something was not right. Here’s another thing about Cathy: she never wanted to worry me. She tried to protect me. All the times I asked how she was doing, her response was usually the same, “OK, just trying to live with this awful disease.” And sometimes, Cathy would open her heart to confess her fears.

Then she would apologize to me. Protecting me again.

Still, I worried about her all the time.

In August, I texted her to check up on her. I got no response. That is not like Cathy, I thought. I let it rest since I knew she had so much to deal with. But days went by and I didn’t hear from her. I got worried so I contacted her family who told me that Cathy had been at the hospital and her health was not good. To please visit.

My heart stopped for a moment. I had to be with my friend.

That day, I went to the hospital to see her. I felt this huge sense of desperation and despair. I could not believe what was happening, but I felt privileged to be by her side. I told her I’d come back, and I did.

The last time I saw my friend was a very difficult day. It was the day I had been informed that the doctors could no longer do anything for her. My heart was crushed. I felt grateful that I was able to spend some time with her once again. I held her hands. And she held mine. I kissed her forehead. Told her I loved her, several times. She pointed at her heart and looked into my eyes like she never had before. Then, I walked out of her room with tears rolling down my face. And feeling so helpless.

I’ve saved most of the text messages Cathy ever sent me. As I was browsing through my messages today, I came across a random quote from my friend. I thought it was a nice one to share and to always remember:

“Try not to worry and get caught up in cancer. Enjoy your health. And live!!!”

I’m gonna miss that girl so much.

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Posted in Loss | 19 Comments

Skydive Part I: The obsession

RebequeneidaEDIT72

Me

So, I finally did it.

If you’re thinking I went skydiving because of my cancer experience, stop right there. I know that sharing my skydive experience here on my cancer blog probably creates that perception, but I promise you it’s irrelevant. (And, I don’t do bucket lists.)

I do want to share the story here as a positive experience, since there aren’t enough of those on the internet.

My desire to ‘fly’ goes way back to my childhood. Of course, as a child, I did not even know that skydiving was possible. And until a few years ago, skydiving wasn’t something I thought about much. And when I did start talking about it, more often than not, people would discourage me, with a few exceptions of course. It’s reasonable though. Jumping out of a perfectly fine airplane, at 14,000 Ft above ground, is not appealing to most of the population.

Still, about two years ago, I started to become obsessed with skydiving. Now you may ask why I waited so long to actually do it. I’ve wondered the same thing, too. The straight answer is because of my desire to always want to control everything. There’s no sense of being in control when you’re a first time diver. But I’ll go into this ‘sense of losing control’ in another post. First, I want to give you a little background about my desire to fly.

I was raised in a small town in the Dominican Republic, Barahona. There‘s hardly ever any action going on there. Today, the population is about 138,000 residents. That sounds like a lot, but riding around the small rural city you wouldn’t think it. So many of the people are unseen. They are poor, they are farmers. Living literally in the sugarcane. Just like when I was a child there 30 years ago.

It’s very simple and peaceful there. You only hear the sound of the breeze in the trees. And occasionally, you hear some animals too because they’re allowed to walk around the town, on the streets. They also come visit you at your home – roosters, cows, horses, bulls, dogs, sheep, etc.

As a young girl, I remember when airplanes started to disturb our tranquility in Barahona. It was a way for politicians to promote themselves by dropping flyers about never-to-be-accomplished promises. As a child, I was fascinated by those airplanes.

At first I was petrified by the sound those airplanes made. When they flew above our house, I actually screamed and ran inside to hide under my bed. (Back then, we hardly traveled outside of our town so there were many things I was not exposed to.) This fear lasted for some time, until one day, I was stuck in a fruit tree I had climbed and I couldn’t come down fast enough to hide. I was forced to view the airplane flying above the mountains, until it eventually disappeared from my sight. Now I was instantly in love with the idea of flying.

After exposing myself to the amazing view of an airplane, my curiosity grew stronger. I got more and more excited, waiting for the next plane to fly by. Eventually, there were military airplanes too. It was about all the excitement I could get aside from the hurricanes we often experienced on the island. I would run after the airplanes, with my arms wide open. Imagining I was flying too. It was a truly magical experience for me.

Years have passed, and like everybody, I’ve been dealing with all kinds of transitions and the burden of being an adult. I realize that, just like in my small town, there isn’t a lot of ‘excitement’ in my life today either, except for dealing with the heavy circumstances life has presented to me. I am always too busy with work and other anxiety at home. I do have this need to want to escape from my reality but adulthood gets in my way. I realize I need to add some joy to my life.

So, these past two years, I found myself looking at the sky again, watching airplanes. Remembering those years as a young, happy girl with a simpler life.

And I began to obsess about skydiving. Why? Maybe I needed something outside myself to obsess about. I really wanted to do something wild, even if the thought of losing control again – the way cancer made me feel – scares me. I mean, once I jump off that plane, there’s no turning back. I’ll be…falling down! The very thing I have feared happening to me again.

The idea of allowing myself to let go and simply let things be started to look more attractive to me than always trying to be in control.

I began to talk to my fiancé every week about going skydiving. He had conflicting feelings, to say the least. He did not want to stand in my way and prevent me from doing something that I found so important, but he already fears losing me every day. Adding this layer of ‘exploration’ and risk to our lives was hard for him to deal with.

But I continued to plan and daydream. I would stick my head out of our car window, like a dog, when we drove fast on the highway, to let the wind hit my face the way it would when I went skydiving. I was trying to convince myself that it was possible. I know I drove my fiancé insane, constantly talking about the possibility of me skydiving soon. “Is it possible? Is it doable?” I would keep asking him. He had to admit that the answer was yes.

One day in August, I asked him to drive me to the skydive place. Just to take another look. To convince him and myself that it was doable. Instead, I spontaneously decided to do it – then and there – without questioning anything anymore. I didn’t even bother to read the consent forms. I already knew the risks. And my fiancé did not bother to protest anymore.

In my next post, I will tell you all about it. I must confess that it was challenging to give up the need to feel in control, which is difficult during these years when I have been threatened by uncontrollable situations in my life. But I did it. And that’s not all. That day I met someone completely unexpectedly as I was getting on the plane. I will tell you about that too.

Posted in Reflections | Tagged , , , , , , , , , , , , | 11 Comments

Sometimes “Unfinished Business” stays unfinished

family drama_EDIT2I am not into cancer movies. There’s something about the majority of them – at least the ones I’ve seen – that does not accurately portray my reality of having cancer. Maybe that’s too much to expect from Hollywood, but it still bothers me how they leave out some of the real and true details – like when a patient loses support from friends or family; or people not wanting to hear about your reality; or the way unresolved family drama isn’t “cured” because one of the members is facing the disease, and everyone becomes a supposedly better and wiser and kinder person because of it.

There is, however, one particular cancer movie that touches me every time I see it. The movie is called “My Life” with Nicole Kidman and Michael Keaton. The movie isn’t necessarily perfect, but from my perspective, it deals with cancer more believably than the other cancer movies. I appreciate it because it covers a lot of subtle topics: letting go of control, rancor, emotional pain from childhood, walking away, desperation, challenging family relationships, fear, acceptance — what I call dealing with the “unfinished business.” Those are things I can relate to. Another reason I like it is that the character gains closure before he dies. I guess that’s my Hollywood fantasy about the way I wish my own post-dx family situations could work out.

So far, this gaining of closure hasn’t been my personal experience. Obviously, I wouldn’t want the same outcome as the character from the movie, but I wouldn’t mind reaching some level of resolution in my life.  I am speaking specifically about challenging family relationships that go back long before I was ever diagnosed. During my treatments, more frequently than not, we were kind to one another. Then, when treatments ended for me, things went back to disappointment, judgments, anger, misconceptions, and manipulations.

Everyone has family drama in some form. Mine seem to go back to my infancy. As a reminder, I was not raised by my biological parents, but by my maternal grandparents. That fact wasn’t especially dramatic or traumatizing for me because my grandmother did a great job raising me. And I was happy. I saw my biological mother very rarely, so our relationship was never solid. Our relationship did not improve when I came to the U.S. to live with her full time when I was 14. We simply lacked a mother/daughter bond that should have been natural, but wasn’t because of all the circumstances, including some circumstances I still don’t understand. It’s sad. Whether I like to admit it or not, my anger over not having a motherly bond has contributed to how I was shaped as a person. [And, the death of my grandma when I was still in my teens took away the person who really mothered me.]

Despite my mother and I not being able to bond, and me trying to accept that fact and move past it, it still hurts me. Deep down, I wish I had a different situation, closer to my perception of what a healthy, supportive family is supposed to look and feel like. My grandmother represents what that means. But she is gone.

Unlike the character in “My Life,” I have not reached any resolution with some of my family members. I’ve tried to talk about my feelings many times before, but the communication gets lost in defensiveness (probably on both sides). The idea that I will be waiting for my ‘last minute’ (or theirs) with the hope of there being a movie-style resolution to our problems feels very sad. And at that point, I wouldn’t want to deal with it, to be honest. I’m already too frustrated and tired, looking for understanding that never comes, and dealing with the disappointment.

Family dramas don’t get fixed by cancer. And just because you walk away from a situation (like I’ve tried to) doesn’t mean you’re healed.

Since my dx and treatments, people seem to have expected me to change and become who THEY wanted me to become, in addition to being more tolerant than ever of their unreasonable behavior toward me. It hurts me to say, but more than one family member has expressed the idea that “God gave her this disease to send her a message so that she changes her ways.” And yes, knowing that some ‘loved ones’ have those attitudes has not helped me to be more tolerant of them.

Maybe we all have a different perception of what family is supposed to be. I know that my inability to accept the fact that this is just “how it is” doesn’t allow me to move forward and free myself from emotional pain, disappointment, and frustration.

Like Michael Keaton in the movie, I often feel like I am running out of time. I don’t want to be hung up on these unresolved family matters that I tried to walk away from (for my sense of well being). The character from the movie actually walked away too, and even changed his name. I need to be at peace with the idea that my family situations may never be resolved and that sometimes unfinished business stays unfinished.

Posted in Awareness, Coping after cancer, Family, My Wishes, Reflections, Support | Tagged , | 24 Comments

My Dumb Phone

dumb phoneAs some of you already know from my recent “15 facts about me” post, I don’t own a smart phone. By choice. I still have a dumb phone. There’s a story connected with that.

In 2011, while I was waiting for that first test result to see if my breast lump was B9, one day I received a follow up call from my doctor. When I anxiously fumbled for my old flip phone to answer it, I dropped it and it broke. I had to rush out and buy a new phone. Under the circumstances, I didn’t bother to upgrade and I bought a similar basic model.

My dumb phone is sort of a reminder of all the nightmares I went through in 2011, the year I was diagnosed, but I’ve made the decision to keep it anyway. However, I haven’t turned on the audible ringer on this phone since I got “the phone call” about my cancer diagnosis. Any sound my cell phone makes bothers me, but especially the Verizon “Kingdom Dream” reggae melody that played that time my phone rang. That time I’ll never forget. Just recently my fiancé and I heard it on someone else’s phone, riding on the train, and we both froze. I’ve avoided hearing that melody since my diagnosis. The good news is I can still enjoy Bob Marley songs.

But now there is a new issue. Something odd.

During the last couple of years, when I receive texts through my cell phone and I click to view the message, a random text that I’d saved from 2011 sometimes shows up instead. Those old cancer-diagnosis era texts have been randomly showing up when I try viewing current texts. For instance, just recently I tried viewing a text from one of my friends, but instead, I saw a text from someone I no longer hear from, which read, “oh, ok. I have faith that is the only incident. Think positive.” Again, a text someone sent to me in 2011.

The issue is I can’t seem to bring myself to erase all the cancer-related texts I received back in 2011. I want to keep them all.

There were times before my diagnosis when I was able to look the other way and ignore anything cancer-related for the most part. Now, I can no longer look the other way. In this case, it is ultimately my choice whether or not I want to continue being reminded of those dark days. The truth is I can’t pretend. I am still in this cancer mess and I have not been able to pull myself out of it because…well…we are never done with cancer once diagnosed. I can’t ignore what has happened to me. And I don’t want to.

Every time I see those texts from 2011 pop up on my dumb phone, I feel anxious but I still read them. I want to remember. The reason I don’t want to delete these cancer-related texts from my phone, the reason I keep exposing myself to the dark world that is cancer, is because I want to be aware. I want to know what the fuck is going on. At all times. I want to force myself to accept and live with what has happened to me. It kind of feels like riding down a very tall rollercoaster, with something to prove to myself. Although I feel fearful of the fall, I keep my eyes wide open.

Maybe I’ll try listening to that Verizon “Kingdom Dream” reggae melody again.

Posted in Awareness, c World, Coping after cancer | Tagged , , , , , , | 20 Comments

About my body and those residents

residents_EDIT2When I was diagnosed with BC, and I was having constant medical exams, I remember all the onco residents who surrounded me, as if they had just discovered gold, to examine me and ask me tons of questions about my health history. I was OK with it. In a way I felt that all this attention was for my own good. And it was a positive thing to allow the residents to study me because it would help future patients too. Residents need to train after all. But lately, I’ve become annoyed at all of them.

At one appointment last year, another resident saw me. She asked the usual questions about my health status, and proceeded with examinations. I walked out uncomfortable but not because she did anything inappropriate. However, she said things that showed she was not on the same page as my regular doctors. For instance, she was 100% against pregnancy after cancer and tried to discourage me, while my regular onco doctors are not against me trying. And it wasn’t the fact that this resident was against it, it was how she expressed her reasoning, which was not backed up by scientific evidence. I understand she had good intentions but receiving conflicting advice at the same cancer facility can be upsetting and confusing for a patient. I don’t believe my hospital would want to create such confusion for me. I made a note that next time I would let my hospital know I no longer want to interact with residents, but I let it slide.

This year, it happened again. This time there were two residents — a male and a female. They both asked questions and proceeded to examine me, simultaneously. This bothered me more than the conflicting opinion/misinformation I was given by the other resident last year. This time I got angry, and asked that only one of them touch me. Not their fault, I could have asked them both to leave but I didn’t. I am not intimidated by my hospital but I also wouldn’t want my care to be influenced if they start viewing me as too demanding or “difficult.” And that shouldn’t affect my care, right?

I’ve realized what the problem is. It’s my breasts. They are a sexual part of my body and although I know these interactions are for medical purposes, it still bothers me. I don’t want to be constantly touched by strangers anymore. I want my appointments to seem more normal than they are now. I want to be able to see my doctors and not feel like I am part of an exhibit or an experiment, for once. Because having cancer already makes me feel like I am. I know, I know, this is helping the residents become better – it’s training. Well, I don’t want to be part of it anymore. On top of that, I am already having a hard time feeling comfortable about physical intimacy as it is, and having all these people touch me makes the way I view my body even more complicated. I mean, my GYN, Onco, survivorship nurse, radiation doctor, residents, that’s a lot of grabbing. Don’t want it!

Perhaps if the cancer had been someplace else I wouldn’t feel as uncomfortable. I think having had this damn cancer on an intimate part of my body has really screwed things up for me, in so many different ways. Sometimes I wish the cancer would have been someplace else, even though breast cancer seems to have more treatment options among all cancer types – at least for early stagers. Of course I don’t really know the challenges of having a different cancer and I am not saying one is better than the other. I just feel this BC has been a big hit to my sexual self concept, and having too many people involved in my healthcare doesn’t make things easier for me.

Posted in Coping after cancer | Tagged , , | 19 Comments

15 Random Facts About Me – Part II

Last year, Nancy Stordahl challenged her readers and fellow bloggers to share 15 random facts about themselves (to read my old list, click here). Now she is challenging us again! And since I had so much fun the first time, I’ve decided to share more about me with all of you. I hope you’ll take some time to share some random facts about yourself too.

Here are 15 more random facts about me:

clowns

two of my toys

1. I am not afraid of clowns. In fact, I love clowns! I think they are misunderstood.

2. I was MVP of both my high school and college varsity volleyball teams. I even got the game ball once and I still have it. I was pretty athletic through my years, and got cancer anyway.

3. I’ve read “Of Love and Other Demons” by Gabriel García Márquez (my inspiration for writing) 4 times, and have cried every time. I am hoping that next time I read it, I won’t cry. There are just some things about the main character that remind me of my life.

4. When I was a child, I would steal flowers from different houses to bring to the cemetery near my house and I would place the flowers on the graves that didn’t have markers.

5. I used to climb the fruit trees in our yard and sit on the roof of my house to eat mangoes and guavas. Every day. I would try to get the mangoes off the trees with a long stick (from the roof) and it was difficult to keep my balance. This made my grandmother very nervous. But I never fell.

6. I was called Pink Panther in fifth grade because I was the tallest girl in class and had long skinny arms.

7. I had all my adult teeth by the time I was 8 and all my wisdom teeth by the time I was 18. A lot came too early in my life, including breast cancer.

8. I talked a lot when I was a child, so much that I was often offered money or other bribes to be quiet for a while.

9. When I was around 9 years old, I met Ramona, a fortune teller who was mute. When she read my left palm she stated, in writing, that I was going to have serious health problems very young and I was going to have infertility issues, but that I would have one child when I was closer to my 40s. (Not bad fortune-telling.) I recently found Ramona on Facebook. And no, I did not request her as a friend.

10. I have a cat who I named after my grandmother. She also shares my grandmother’s birthday.

11. I don’t own a smart phone. I have a dumb phone and I am very proud of it.

12. I love Charlie Chaplin and enjoy watching black and white movies.

animals

In this collection, you can see some of my pets: Bingobella, Basil, Layla, Angel, Goofy, among others.

13. If I had to choose a favorite city to live it will have to be Montreal Quebec. I love the  food, the people, the arts and atmosphere. I feel like I am home every time I go there.

14. I collect miniature animals that represent the pets and other animals that have been important to me in my life.

15. Two of my short stories about my childhood with my grandmother have been published in a Journal – “Respect” and “You won’t forget, right?” My goal is to write my own book of short stories one day, soon.

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Now my clowns ask: Please share some things about yourself in the comments. We would like to learn more about you.

Posted in Reflections | Tagged , , , , , , | 26 Comments

Eternal Stormclouds of a Conscious Mind

erase memoriesI’ve been thinking about the movie “Eternal Sunshine of the Spotless Mind.” It’s about a couple that has a painful breakup, and each goes through a procedure to erase their memories of each other, slowly forgetting the person they used to love.  

I’ve wondered if I would consider undergoing the same procedure those characters went through, if such an option were ever available to me. If I were able to select the specific memories I want erased from my brain, then I would have to say yes, I would consider it.

But, I’ve also wondered, would my cancer experience be one of those memories I would want to erase? While contemplating the idea, I thought of the positives and the negatives.

Removing the memory of my cancer experience from my mind would allow me to live in a fantasy. And what a fantasy that would be!

My past five years — with my memories of cancer erased— would have been completely different. I would have the same level of awareness about my mortality that I had before being diagnosed — because there would be no reason to even think about cancer hitting me at the age of 32. (No one else in my family had been diagnosed so young.) I wouldn’t be making every decision with my health in mind. I probably would have built a family by now and taken more risks, like moving out of NYC. I would have allowed myself to hold on to my innocence and my denial a little longer. And friends and family would be THRILLED because they never want to talk about cancer anyway.

But would I really be better off?

I have conflicting thoughts about removing this specific memory, because since my diagnosis there is something I want to try to hold onto. And that something is awareness, even though it is a burden. I am not exclusively referring to the awareness of cancer. In this case, awareness covers a much bigger part of reality.

To a degree, I don’t want to make myself innocent again, because it puts me in a place where I can get hurt. I want to keep myself aware of pain, so I can be ready. Maybe it will hurt less when it comes.

I remembered how I felt when I was diagnosed. I felt like I jumped off a cliff with no parachute to save my life. Reality never looked rawer. I felt fooled. I don’t want to experience that same sensation if I were to face cancer again.

As much as I hate being a cancer patient, I don’t want to lose that level of awareness that this pain can happen. I don’t want to be naïve again. Now, I no longer look the other way because of fear. I force myself to know the facts and the potential issues related to my health so there are fewer surprises. Now I expose myself to as much information as I can. Anything I learn, as painful as it may be, would only help me make educated decisions about my health and about my life.

Also, the fact that cancer is real and personal to me has allowed me to feel a different kind of compassion that I was not prepared to feel before. I am able to connect with other patients who have been emotionally and physically affected by this disease in a more profound way. We all come from a familiar place which is why the support we give to one another is so genuine. It feels as if I have all these friends even though I haven’t met most of them in person. I don’t feel alone. I can freely be vulnerable with these friends and I am not afraid or ashamed to let my emotions show. I appreciate this connection that my memory of my cancer has created for me.

And as a bonus, I have also become more aware of who my true friends (and family) are.

It sucks that I had to experience cancer at such a young age, because part of that innocence and freedom I once had died too quickly for me. I would have liked to hold on to that a little longer. But cancer happened and I could never change that by simply removing the memory.

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If you had the choice to erase a memory (or memories), which one would it be and why?

Posted in Awareness, c World, Coping after cancer | Tagged | 22 Comments

22 Tips for Chemo

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When I was diagnosed with BC, I only wanted to hear about stuff I was dealing with at the time, and not, let’s say, someone ranting about survivorship challenges. You know — like what I usually do here on my blog.

Ranting helps me relieve stress, but I wouldn’t want my rants to discourage a newly-diagnosed patient in any way. It is such an overwhelming time when you’re first diagnosed that it is probably best for patients to try to absorb information one step at a time.

I haven’t really shared my experience with cancer treatments on this blog, other than complain about Tamoxifen from time to time. I thought it would be helpful to share some of these experiences in case a newly-diagnosed patient comes across this blog.

Before I continue, I have to mention that, obviously, the information I share here is not a substitute for medical or professional care, and you should not use it in place of a consultation with your physician or other healthcare provider.

If you are newly diagnosed and are scheduled to receive AC/T (A-Adriamycin, C-Cytoxan/T-Taxol) as your chemo regimen, here are some tips that helped me cope with — and sometimes prevent — side effects. Many of these tips originated from the wonderful group of ladies I came in contact with during the beginning of my cancer mess. I am fortunate to have found them during a time when I was super scared. No one could really offer the same level of support they did.

1) DRINK, DRINK, DRINK! You must drink at least 8 glasses of water a day to help flush the chemicals from your body. It was much easier for me to drink lukewarm water. Drinking cold water made me feel sick.

2) During the infusion, chew on ice chips to help prevent mouth sores. This worked for me.

3) Request a prescription for anxiety to help calm your nerves. Mine was Ativan, which also helped with nausea.

4) Always bring things with you to your chemo appts. to keep you entertained—such as books, electronics, games, a personal journal, etc.

5) Eat very small portions of meals more frequently – at least for the first 5 days after the infusionuntil you know how you’d react to your treatments. I had 6 meals a day – an apple, a small bowl of oats, a little bit of fish with cooked veggies, for example.

6) Have stool softeners handy and take them as soon as you start feeling constipated. Some people suggest taking them 1-2 days prior to the chemo infusion, especially for Adriamycin. Believe me, you want to do all you can to avoid constipation. Ask your doctor about it and get a prescription right away.

7) Rinse foods before eating. For veggies, try steaming or keep in water with apple cider vinegar for 20 minutes, then rinse, before eating.

8) Be sure someone helps you clean your bathtub from time to time. In general, there’s a lot of bacteria in the bathroom and you want to avoid infections.

9) Have foods available and ready to eat (especially cooked foods) so you don’t have to use your energy on trying to prepare meals.

10) It is best to keep nutrients in your body than to try keeping a diet during chemo. Eat everything your stomach can tolerate.

11) Having taste changes during chemo? Here’s a helpful link on how to manage that side effect.

12) Watch Supplements. Dietitians in cancer treatment centers suggest not taking dietary supplements during chemo. These include vitamins, minerals, herbals, and botanicals. There are potential drug-nutrient interactions that can interfere with the effectiveness of chemotherapy. Talk to your doctor about taking any supplements when you are undergoing chemo.

13) REST, REST, REST! Pay attention to what your body is trying to tell you. Don’t push yourself too hard. But also try to keep moving.

14) Let others help you. I don’t like being dependent on others, but if there’s ever a time when we need to accept help, this is it.

15) If possible, stay away from people who make you feel guilty about your cancer. Cancer was NOT your fault. You need to hear things that lift you up during chemo, not things that bring you down.

16) It is helpful to have someone you trust in charge of communicating to others about your health status to avoid feeling overwhelmed. Having this person will also allow you to do #15 (above).

17) Allow your caregiver to help you. Be open and flexible.

18) It is helpful to see a dentist before starting chemo to make sure your teeth are in good shape. It is important to keep your mouth clean during chemo to help prevent dental problems. Biotene mouthwash and toothpaste helped me prevent those. (If you’re getting a mastectomy, please check with your surgeon about when you should visit your dentist.)

19) If you experience any side effects or symptoms, contact your doctor right away. Do not wait. But try not to panic as these may be normal during chemo.

20) Be sure to wear sunscreen when being exposed to the sun. Ask your oncologist or dermatologist what the best brand recommendation is if undergoing chemotherapy.

21) Some patients have asked me if I would use the cold caps to prevent hair loss and my answer is always no. My cancer was invasive. If I am going to go through chemo, I am going to let it hit every part of my body, including the top of my head. But that’s my personal preference. Perhaps in the future, when there is enough statistical evidence about the benefits of this tool, I would consider using it.

22) Remember: Whatever feelings you are experiencing during this difficult time are normal. Don’t question whether or not you’re reacting to the situation the right way. There’s no right way, only your way. Allow yourself to experience all the emotions as this will help with your healing process.

Day 1 of the first treatment was the worst for me because I had no idea what I would be facing. It’s normal to feel scared. As I continued with treatments, I had more confidence. Chemo was no picnic but it turned out to be “easier” than I had thought. Please keep in mind everyone reacts to treatments differently. Be patient with yourself.

Lastly, I was not able to find sources on how to mentally prepare for chemo. My dear friend Nancy Stordahl wrote a helpful guide, “Getting Past the Fear”, to help others face their fears. I recommend it.

I am sorry you had to search for this topic. And good luck with your treatments.

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If you had AC/T as your chemo regimen, please feel free to share some tips in the comments section.

Posted in c World, Chemo, Treatment | Tagged , , , , , , , | 12 Comments