May I introduce you to my pets?

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Nelly

Nelly, who I named after my sweet grandmother, is my kitty. It wasn’t until I took her to the vet and we checked her adoption records for the first time that I realized she shared my grandmother’s birthday. What are the odds? So she is extra special to me. I got her from a shelter when she was only 4 months old. Nelly is a very independent cat, which I appreciate given my busy schedule. She likes to do things on her own terms, like cuddling and letting others pet her. Nelly loves to nap with me. I call her “Moo-tee” which is a baby way of saying “Mushi,” which is how people call cats in the Dominican Republic. But my honey calls her “Moody,” which is also accurate.

She turns 11 years old this year. I hope to enjoy her company for many more.

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Layla

This is Layla, who is now 8 years and 4 months old. Someone used to tell me she would outlive everyone else because of her tough attitude. She has for sure outlived her guinea pig years. Someone gave her to me, along with Basil, her hubby. They were both about 3 months old. Layla is very demanding. She used to drive Basil insane, to the point of him hitting himself against the walls of the cage. She also had some issues with her baby, Bingo. Sadly I had to separate them all. (Too much bullying.) Perhaps they just needed their own space. Don’t we all?

Layla loves to eat lettuce, Italian parsley and blueberries. She loves cuddling with me.

The following two piggies are no longer here but this post wouldn’t be complete without them.

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Basil

Basil, who I used to call “poopilandia” because of his excessive amounts of poops, was my second piggy— given to me with Layla. I also called him “handsome fella,” because he truly was. He had a little streak of grey hair at the top of his head that made him look exceptionally handsome. Basil enjoyed taking road trips with me. He also had a special look – he would tip his head down and shine his eyes at me sideways, like he was flirting.

Basil was quiet. He loved his celery, grapes and raspberries (not recommended to feed guinea pigs too much fruit, only little pieces once in a while).

Next is my very special piggy, Bingobella.

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Bingobella

When I got Layla and Basil I thought they were both females. But, Basil’s behavior made me wonder.

I soon noticed that Layla seemed bigger than usual. I blamed it on her diet. She could eat a whole bowl of salad.

One afternoon, after a fun time at the park with Basil and Layla, I got home and to my surprise noticed Layla jumping (we guinea-pig-people call it “doing popcorn”). I got closer to the cage to make sure she was OK. Then, I noticed she was giving birth! I could not believe my eyes when the baby’s first instinct was to reach out for the celery and cucumbers, which turned out to be her favorite treats. Layla wasn’t even done cleaning her up.

And that was Bingobella — who grew up to be bigger, stronger and louder than her parents. And her name? As I said, her arrival was quite a surprise to me, so I thought naming her “Bingo” was appropriate. But I also felt that the name needed more of a feminine touch so I thought of combining both of her parents’ names into one: Ba-la — Bella. And that’s how I came up with the name, Bingobella. She was also beautiful which of course is “bella” in Spanish.

I don’t have children but I see my pets as my babies. They really become your family. And they were all a great support for me during my cancer mess. It made me happy to see them. They were also a reason for me to put up with the treatments.

Both Basil and Bingobella have left an empty space in my heart. I miss them a lot.

But I believe in the Rainbow Bridge.

Posted in Family, Support | Tagged | 10 Comments

Associations

IMG_1596I’ve just returned from a vacation. I was really hoping to have both a mental and physical time off. Away from all of this stress I have in NYC. I didn’t want to think of cancer during my vacation. But as I was walking around California, I realized that I have some cancer associations that might follow me around for a while. Hopefully there will be a time when I can let these things go. I mean, it’s not like I get panic attacks when I make these connections, but they always make me think of cancer.

Here are some of my cancer associations:

1. My phone ringtone: I haven’t turned on the audible ringer on my 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. I’ve avoided hearing it since. The good news is I can still enjoy Bob Marley songs.

2. ATM: Now this is kind of messed up! It’s not like I can avoid automatic teller machines, unless I hide my money under my mattress. My mutated cancer gene is called “ATM,” but it didn’t come with any cash. Now, any time I see a sign for an ATM (they are everywhere), I think of my gene—especially the sign that says “ATM inside.” Really? Couldn’t my gene be called something like XQñ, which is less common? I don’t even know if those initials exist which def. would have allowed me to forget about my gene during my time off.

3. Veggies with “clear margins”: Ok, so you might think I am crazy. It took me a year to stop thinking of a bad spot on a veggie and not relating it to cancer. Whenever I would see a brown spot on an avocado or a pepper, I would remove it carefully so “to get it all” and I would run to my honey and say, “look, I got clear margins!!” There are still times when I think about it.

4. My mother’s bedroom: I spent most of my chemo days in one of my mother’s bedrooms. Whenever I visit her place, I avoid entering that room. And when I have slept there since, obviously I can’t help but think of those months.

5. Mini Argentinean sandwiches: Mini white bread triangle sandwiches with a thin slice of ham, cheese and a spread. Yuk! I can’t eat those anymore. The sad part is that I used to love them, but my mother fed them to me a lot during my chemo days because she was working and wanted to make sure I had some food I could tolerate. That tolerance didn’t last too long. Instead, I stuffed myself with pea soup every single day, almost. Luckily, I still love my pea soup.

6. Graham crackers: My hospital has these available in the waiting room, in little plastic wrappers. I simply hate them now. They remind me of not being able to eat during chemo. Even my honey, who accompanied me to my appointments, and ate a lot of those crackers, makes the association, saying that he never wants to have to see another wrapped graham cracker again.

7. My breasts: I kept both of my breasts because it was the right decision for me at the time. I was too overwhelmed with the information and the treatments I was already getting for my cancer. But, truth is, they remind me of cancer now. I sometimes try to play dumb, pretend they aren’t even there. But they are size D so it’s a bit of a challenge to fully ignore them, ya know? No guys, I was referring to the fact that they sometimes get in my way. And yes, this has affected my sex life, too.

8. Every test/scan: Obviously, every test I get now—blood work, sonograms, or self-exam, has me focused on cancer.

The funny thing is, even when we haven’t been diagnosed with cancer, doctors often recommend these tests to rule out malignancies. However, these cancer conversations never take place until the doctors have found something. Then you can’t deny talking about it and dealing with it.

9. Winter: I don’t mean to sound ungrateful. I know some of you expect me to be transformed after cancer. To suddenly love all life has to offer, including winter. Or else. I have come to appreciate things more passionately, because now all my emotions seem to be more raw. It could be the hormones, Tamoxifen, getting older, “maturing,” life circumstances…whatever. Let’s not give that credit to cancer please.

But anyway, moving to the states from an island was difficult enough for me, but on top of that, it now seems that I receive all the bad news during the winter: my cancer diagnosis, my grandmother’s terminal diagnosis, my great aunt’s terminal diagnosis, my aunt Rossy’s leukemia diagnosis. Now I have a bad association with this season, which sadly includes the Holidays, too.

How about you? Do you have any unusual associations in your life that now remind you of cancer?

I already need another vacation.

Posted in Coping after cancer | Tagged , , | 17 Comments

Reasons she was my mom

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Me with mama

Today is Mother’s Day here in the U.S., but we celebrate it on May 31 in the Dominican Republic (D.R.), where I was born and raised by my grandma. But she was also my mom. My dad. My best friend.

My biological mother had moved to another part of the country to make a living so I hardly ever saw her. My grandparents took me in from birth. Eventually my mother moved to the States when I had just turned 7 years old. So, my grandparents took care of me for 14 years. But it wasn’t until recently, well, maybe a few years ago, that I realized that my grandma was more than just a grandmother to me. She was my mom, too. And there are many reasons why she was. But I will list just a few.

When I was growing up, I loved to eat a lot. I might have had an eating disorder now that I think about it. Right after eating a big lunch prepared by my grandma, I would gather some ingredients to continue cooking on my own, on a charcoal grill, without her knowing. I would get so sick after eating so much.

“Next time you get sick, I am going to visit cousin Alba and leave you alone so you can stuff yourself some more,” my grandma would say to threaten me. One time, she almost did.

Another day came when I overate and got sick. My grandma got dressed to visit her cousin Alba like she said she would. I remember sitting in the middle of my bed, throwing up and crying, as I saw her leave the house. I was scared. Not a minute had gone by, when my grandma turned around and came back in the house. She changed out of her good clothes and shoes and went into the kitchen to make me a chicken soup. Seeing how scared I was, she never tried that tactic again.

Going through puberty is tough. I was 10 when I started to go through this stage and it made me agressive. Damn hormones have always gotten me into some kind of trouble!

“I am leaving this house and not coming back,” I would say to mama whenever I was unhappy about something.

“Let me know because I am coming with you!” was her response.

“No you are not. You can’t come with me.”

“Oh yes, I can. And I will. I have a big suitcase where we can fit all of our clothes.”

I did not know what to say to that except I felt bad I said those words to her. Because I could see she really meant it — that she would never leave my side. She always had a way to calm me down with her loving words, instead of war words. And no one else could do that except she.

Then there was a guy named Pachico, that “liked me.” The problem was he was 19. I was 12. I developed early so I really looked 17. One evening, he stopped by the front of my house to read a poem he had written for me. I didn’t like him but I enjoyed the attention. A few minutes later, I saw my mama holding a pot with hot water in it. I had no idea what she was doing until she made a stop next to me and said to Pachico, “you see this hot water I am holding in my hands? If you ever come here again to bother my daughter, I will pour it all over your head.” I was embarrassed and he apologized. Pachico was actually a gentleman and very polite, apparently.

At all ages, from the time I was a child until I was a teenager, my mama always held my hand when crossing the streets.

When I moved to the U.S. at the age of 14 to live with my biological mother, my mama decided to come with me for the transition. She stayed with us for a few months. I was not completly happy with the sudden change, although I did want a normal situation for myself, to live with my mother and sister.

My grandma was so worried. Looked sad most of the times. This was also because I was a teenager. We all know that stage can be difficult and mine was, not only because I was in that transition age, but because I was removed from my home. To a new “home.”

When I moved to the U.S., I liked to be out all the time. This was the biggest challenge at home. I would come home by midnight (past my curfew) and everyone would be sleeping except mama. She would be up waiting for me to get home safely, just the way she watched over me when I was a child in D.R.

Mama also knew how to keep a secret. I could tell her everything about my life and I knew she would never reveal the information. I always remember her saying, “you are the master of your secrets and the slave of what you speak of.”

When mama got ovarian cancer, she was pronounced terminal. I was 19. She was 67. I went to see her in the D.R. for a week, something I regret, not being able to stay longer. But I spoke to her on the phone every single day, except one day. I was told she cried the day I didn’t call. She had asked for a picture of me to hold in bed. She asked her brother Toño, to shelter me if I was ever homeless.

The day before my breast biopsy, I had a dream about mama. She had only spoken to me in my dreams 5 times. In this dream, as she was staring down at the floor,  she said she knew about my biopsy. Then she lifted up her head and her face was full of tears. She then hugged me without letting go. I contuned to tell her I was OK. I was OK.

Thinking back again to that time when I first moved here, I had a really bad fight with my biological mother. My mama was in the house when it hapened. I was upset with her too. I yelled. I never yelled at my mama. Ever. Not until I moved here. She knew I was struggling, emotionally, although I never mentioned it. But she didn’t yell back. Instead, she went into my bedroom with me. Locked the door and said:

“One day, you will realize I am the one person who has loved you the most in this entire world.”

What do you say to that? I said nothing. I was too young to realize what those words really meant. And this is part of what’s making my grief so difficult. That I lost her during a time when I did not get it. A time with many struggles. Anger too. It’s a reason why I am writing my childhood stories about our lives together. Not just to let her know, wherever she may be, that she was right, but to also let her know that she’s the person I’ve loved the most in this world.

She is the reason I would consider adoption if I can’t have children due to my cancer. I see now the intensity of her love without even having given birth to me. After all, a mother is a verb, and not just a noun. She was both.

These are some of the reasons she was my mom.

Happy Mother’s Day Mama. I miss you. Every. Single. Day.

Posted in Family | 4 Comments

On vacation

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Joshua Tree National Park

We’re going to visit California tomorrow and I am feeling super excited about it.

Prior to my cancer diagnosis, we were thinking of possibly moving there. But now it has become difficult for me to move anywhere because I am afraid to switch medical care. I am aware there are great doctors everywhere, but I think I am having a “mama’s little girl” issue…you know, once you are stuck with an Oncologist, it’s hard to suddenly make a switch. It’s not as easy as switching your PCP.

I feel so wonderful when I am in California—something about the air. The energy. I like the people, the food, and the scenery. There’s just too much to explore and I am not done yet.

We love the desert so we will be spending some time in Joshua Tree National Park.

They say we must leave our worries behind when we travel so this is what I am planning on doing.  At least try to. Except for my pets, I’ll definitely be thinking of them because this is what “mothers” do. No, they won’t be left alone. I have a wonderful friend who will be staying at my place with them, and luckily, they love him.

One day I’ll introduce you to my pets.

I need this time off so badly.

If I don’t respond to you right away, it’s because I’ll be hiking up a mountain with no access to the internet. I hope I don’t come in contact with a rattlesnake like I once did.

I shall return. On May 14.

Posted in Travels | Tagged , | 11 Comments

My “stuck-in-between-two-worlds” haircut. Were they lying?

My hair was pretty much gone after my second infusion of Adriamycin. I was expecting it, so I was mentally prepared to deal with that loss. I did not cry when I went bald. I did not cry when I shaved my head. I did not look hot either, although people insisted I could pull off the “bald look.” I knew I looked like a Martian which now fits me perfectly because I also have a mutated gene. Oh wait! That’s the Xmen I’m trying to compare myself to. Nevermind.

I only have one or two pictures of myself bald, which I took with my dumb-phone (I don’t own a smart phone) so the resolution quality of the picture is lacking. I was serious when I said I didn’t want to call any kind of attention to myself when I was diagnosed, so I refused to allow people to take pictures of me. I knew the pictures were not being taken because I looked nice. They would have been taken because I had cancer and because I was bald. Yeah, yeah, don’t try to convince me otherwise.

People continually told me, “hey you look hot bald!” I went along with it because I didn’t have the energy to argue. “I know I look hot. Don’t need to point it out, girl!”

Then my hair started to grow back, all neat and…super grey. I had to take a picture of that because I honestly thought I was transitioning into an old lady very quickly.

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One month post-treatment

Again, people continued saying to me, “How cute are you? Your short hair makes you look so young!”

Seriously? Most of it was grey! So again I went along with it and allowed the “Big D” (denial) to kick in to make myself feel better. And to make them feel comfortable.

Hair started to grow more normal two months after finishing chemo treatments. I had baby hair, so curly and wavy. I liked it. Others liked it too.

All my life, before this, I had very long hair.

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My long hair before cancer

It made me feel very feminine. I liked it better long — until I was diagnosed. I now refuse to let my hair grow long. I feel more comfortable keeping it short— it makes me feel prepared.

Now I wear what I like to call, “my stuck-in-between-two-worlds” haircut:

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My “stuck-in-between-two-worlds” haircut

Even the look on my face has changed. It feels right. I also feel ready. If I ever have to shave my head again, there will be less work to do. At the same time, I also don’t want to be part of my old world. I am not the same person I used to be. This is my new “comfort zone” — to keep my hair short.

me now

The longest length I go for.

But recently, more and more people tell me they miss my long hair. “How come you don’t let it grow?” they say to me. And when I get it cut, they now say, “Oh no, you cut it short again?!”

Were they lying to me when they said I looked hot bald? What about when they said my short hair looked adorable on me? Is it that they are sick of my short hair? Does it remind them of my cancer?

No, I think it’s the old me they miss.

But does it really matter if they were lying or not? It’s not like I had a choice to change anything. I also can’t magically become who I used to be, because I can’t. I am stuck in between two worlds now: the cancer world and the one where denial hangs out. I can’t belong to either world 100%. I need to split myself between them and part of that split involves my physical look, too.

Why, you ask?

Because I refuse to be dropped again, the way I felt when I first heard the words, “you have cancer.” I was not prepared. I was not even warned. Now I know better than to get too used to fantasies. Ok, maybe “hair” is not really a fantasy, but it is not so important to me anymore.

I know I have to live my life, and I am truly trying, everyday. But I also want to get used to the idea that this life won’t last forever – one of my ways to feel “ready,” in addition to keeping my hair short. It’s also the way I cope with my “new normal.” My new comfort zone.

And ironically, a good way to truly live life to the fullest.

Posted in Coping after cancer, Self Awareness | Tagged | 13 Comments

What it feels like to be in the oncology waiting room

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Me waiting to see Dr. Dang (Oncology)

My friend Ed recently asked me, “What does it feel like to be in the oncology waiting room?”

It was an interesting question. I had seen many doctors in my life, but never a medical oncologist. It feels different to me, of course. Even during my cancer experience, it felt different at each stage of treatment.

We all go through our yearly check-ups with our doctors — PCP, GYN, dermatologist, you name it. Personally, I never really thought they would “find something,” certainly not in my breasts. My tests results had always been great. Even while I had my tumor, my blood work was excellent. “I can’t find anything wrong with you!” I recall a doctor saying to me three months before I found my lump. I am young, I thought. What could possibly happen at this point in my life that’s life-threatening? And no one in my family had been diagnosed with cancer before the age of 40.

Before BC, I had different worries when I saw my regular doctors. “Will my cholesterol be too high? I’ve been eating too much greasy foods lately” or “Is this a UTI?” You know, simpler stuff.

Ok, I’ll confess. There were times when I thought they would find ovarian cancer due to my family history, but breast cancer was the farthest thing from my mind.

I never enjoyed seeing doctors. I did it because I had to. It’s what I was told to do at home from a very young age — to take care of my health. There just seems to be more issues with us females, no? Even our gynecology check-ups start at a much earlier age than men’s prostate exams. They don’t get their prostate checked until after they’re 40. But we ladies need to monitor ourselves for cervical cancer, for example, at a much younger age.

But not to distract you from what I said to my friend…

“Ed, the ‘Big D’ (‘Denial’) used to be a good friend of mine. He used to accompany me at all my doctors’ appointments. But the day I was diagnosed with cancer he abandoned me.

For me, the first two months after diagnosis were the worst because I was still waiting for the treatment plan. I did not know ‘how bad’ the cancer was. Once that was figured out, it became easier. In fact, seeing my Oncologist made me feel safe. That is, until my treatments were finished. Then it was a different story. Without the regular appointments and follow-ups and constant meetings with my team of cancer doctors, I felt I was no longer protected. I felt abandoned.

On the other hand, now all of my appointments with my general doctors are nerve-wracking for me. Now that they know about my cancer history, the attention they give me seems slightly different — they pay more attention to me now, which in a way is a good thing.

‘You haven’t gotten your period yet? Come in, we’ll do a sonogram!’ my GYN will say to me the second I complain about not getting my period. Before my cancer she would say, ‘It’s probably stress. Wait for it. It’ll come.’

Of course, it feels a lot more intense in the oncology waiting room. You are there to check for one thing and one thing only: cancer. What makes this process so difficult, unlike previous times when I saw my regular doctors, is that I’ve already been diagnosed with cancer. In my mind, it’s just a matter of time. I just don’t know when and how involved it will be. There is always the fear it will come back.

I fear what my Oncologist might tell me next. Waiting to be seen, I think, ‘What if she sees something suspicious?’ I tell myself. ‘Would she suggest a new scan if I complain about pains? What if she doesn’t suggest a scan and there is something?’ ‘What if my blood work shows something?’ And remember, denial isn’t there with me to keep me calm. Only the Ativan is, and sometimes that doesn’t even work so I gave up taking it.

In the waiting room, I reach for magazines to distract myself, but they are all related to cancer. Couldn’t my hospital have magazines on, let’s say, ‘How to get your groove-on back after cancer’?

And there is something else: I see other cancer patients while I wait. We are all in different stages — some patients may be in a lot more noticeable trouble than me — an opportunity for my mind to get creative, in addition to also feeling a bit guilty.

We all look at each other in the Oncology waiting room wondering what each of our situation is, but we are too afraid to ask one another. At least that’s the culture at my hospital. We can still see the fear when we look into each other’s eyes though. That we all have in common.”

No, it isn’t pleasant to be in an oncology waiting room. But these are the cards I’ve been dealt, I tell Ed.

Oncology appointments never really end. They’ll keep track of my health for the rest of my life. I can always choose not to see my oncologist anymore, or to see her less. She actually tried to put me in the survivorship program at MSK. This meant I would only have seen her if something came up, to which my response was, “No way, Dr. Dang!” I wasn’t even three years out from diagnosis. How could this be? So I am back to seeing her 2x a year. So, the thought of NOT seeing my Onco scares me even more than having to see her.

In a way I think I have gotten used to this “new normal.” It has also turned out to be my comfort zone.

What makes this experience challenging is that I haven’t been able to control the fears and anxieties I feel in the oncology room. And these feelings contribute to how uncomfortable it is to be there. I felt I lost control over my life when I was diagnosed with cancer. I fear it could happen again.

Posted in c World, Coping after cancer, Follow-ups | Tagged , | 17 Comments

The devil in Ms. Matos

Bathroom TimeI haven’t written about my chemo days yet on this blog but I sometimes think about the unexpected things I had to face as a result of those heavy treatments. Today, a memory popped into my head that actually made me laugh. But believe me it wasn’t so funny at the time.

Doxorubicin, the chemo drug known as “the red devil,” really did put the devil in me after my second infusion, in the form of terrible constipation. The added challenge of having English as a second language didn’t help.

One Saturday morning, in distress, I called my hospital.

“When did you last have a bowel movement?” the nurse asked.

I thought about it for a moment and said “maybe a day or two ago.”

She said that sounded normal, and that I should continue to follow doctor’s orders.

“If you still don’t have a movement in the next few days, call us back.”

She was less concerned than I was, but I did not question her.

I had done everything as directed by my oncologist: drank lots of fluids, ate small portions of foods, took my stool softeners, rested. But no matter what I did, I still faced the evil side effect. I was in so much pain I could hardly move or eat. And the pills, I can’t figure out how they found their way in. For days, I lay on my bed. I barely closed my eyes all night, crying.

One day, my mother put me in a “giving-birth” position, determined to help. She placed a puppy pad on the bed, just in case. I had the contractions, but no baby arrived. ”

My mother put on plastic gloves, ready to help me go. “Come on, lay down!”

“Stop it, ma, you’re not a proctologist,” I cried. She laughed, but this was no joke. This was real pain. Real suffering.

The next Friday morning — Good Friday, and the day I turned 33 (as if this event wasn’t dramatic enough?) — I struggled to the phone, to call my oncologist.

“Any bowel movement?” the nurse asked. I struggled to speak. When she didn’t hear me, she asked again. “When was the last time you went?”

“Two weeks ago,” I said.

“Two weeks ago?! This is not what you told us! The notes say that the last time you went was last Friday, one week ago.

“You asked if I had a bowel movement. I feel contractions in my bowels every day. Movements. But I am not going.”

“Miss Matos, that is not what bowel movement means.” And she explained. “If we knew this, we would have told you to come to the emergency room.” She doubled my dose of softeners and laxatives, and repeated these new instructions three times. “If you don’t go by tomorrow morning, you need to come to the hospital and have us help you manually. Do you understand?”

I finally did understand. I took my pills and drank all the water I could flush through my system. Saturday came, and I finally “gave birth,” though it was not an easy one.

“This must be the feeling you get when giving birth to your own child,” I thought, which is probably why it took me so long to flush.

The good news? There was no need for any special assistance, and my intestines remained intact despite the misunderstanding.

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This post was inspired by Nancy Stordahl from her post.

To newly diagnosed patients: Although I had this bad experience, it doesn’t mean you will too. But try these steps to help minimize your chance of constipation problems:

  1. Eat very small portions of food starting 48 hours before your first treatment.
  2. Eat small portions of food more frequently.
  3. Drink at least 8 glasses of water a day.
  4. If the chemo you’re taking can cause constipation, be sure to start taking stool softeners the day before chemo but ask your Dr. how many days you should be taking them for and how often (I took 195 pills during the last 3 infusions of AC. Yes, it was that awful for me.)
  5. Have laxatives handy.
  6. Have prescriptions handy in case you need to run to the pharmacy. Best to have the prescriptions filled so you’re ready.
  7. Avoid carbohydrates.
  8. Eat a very high-fiber diet.
  9. Don’t sit around. Try to move around as much as you can.
  10. Know what bowel movement means so you don’t experience a more serious problem.
  11. Keep TUCKS handy in case you develop hemorrhoids due to severe constipation (http://www.tucksbrand.com/).

To other fellow bloggers: If I missed anything on this list, please feel free to add in the comments.

Posted in c World, Chemo | Tagged , | 9 Comments

To ignore or to educate: that is the question

rihanna animated GIF I don’t think any of us really expects people to offer us perfect words of wisdom or comfort when they find out about our diagnoses, but I am surprised by how many people have impulsively said really inappropriate and completely uncomforting things.

How do some people become so insensitive that they feel free to casually and graphically talk about cancer deaths — even to someone they don’t know well enough?

You know, I am getting tired of excusing certain behavior with the “people don’t know what to say” phrase. There has to be a line people can’t cross and they need to be aware of it. But whose job is it to educate the non-cancer people about these things? A patient going through treatments is too tired to do it.

Well, recently it happened to me again — and I responded exactly the way I wanted to. I was telling a co-worker (a temp, who was on her last day at the job) about my diagnosis and she didn’t even let me finish my sentence when she started giving me details about her friend’s painful death with cancer. I could not help myself. I leaned over her desk, looked into her eyes, and said “you know, you will die one day too.” I know my approach was not the best, and probably a little inappropriate, but I guess the annoyance caught up with me.

I reminded her that everyone will face mortality, but we don’t like to be reminded of it, do we? And of all people, we cancer patients certainly don’t NEED to be reminded of it. Anyway, that was the last I saw of my co-worker.

I’ve read a lot of articles on “what not to say to cancer patients.” I think we’ve all been victims of situations like the one I described above. Often I haven’t responded the way I wished I could have. I get upset with myself for that. But maybe there is no right way to respond.

During my treatments, I didn’t want to use my energy to educate these people while I was dealing with a serious health issue. And, personally, I was afraid to lose the support.

So, when inappropriate things were said to me, I would tell myself “their intentions were good” because I really wanted to believe that.

We all know that many people have a hard time with self-awareness, and most people don’t know what to say or how to act around you when you give them your news. But it gets frustrating sometimes – to the point that we feel alone. So wouldn’t it be better to correct/educate them so they don’t say something wrong to another cancer patient?

I think that just as much as we patients get educated about how to treat our disease, and how to cope with it, there should also be some level of education on how to approach a patient. But whose job is it to educate? Should we incorporate a new curriculum at home to teach our children about empathy and how to behave when others are facing a challenging situation such as cancer? We should already be doing that though.

Should hospitals incorporate new strategies on how to care/approach/communicate to a cancer patient? Or is this responsibility another part of the patient’s burden? After all, we patients are probably best qualified to lead a real discussion and create a better interaction between the patient and the non-cancer people.

I think this communication problem is one of the reasons why patients isolate themselves and don’t feel they receive the right support from non-cancer people (not saying all act in that way). This is why I didn’t tell everyone about my diagnosis in the beginning. I just wish we didn’t have to excuse other people’s behaviors anymore. I also wish they wouldn’t take things personally when we try to educate them.

By the way, it feels just as bad when it’s a family member facing cancer, and someone responds in the same way.

This is exactly the type of situation where you should ask yourself the question: “How would I feel if someone said that to me?” before saying anything.

I am curious to know what other patients think. What’s more important to you: to ignore or to educate? How do you react to people’s ignorant comments about your cancer? Do you use the energy to address it at the time those comments are said, or simply ignore them altogether and move on to the next interaction?

Posted in Awareness, Coping after cancer, Reflections, Support | 18 Comments