Reasons I kept my cancer diagnosis semi-private

shhhI chose to keep my cancer diagnosis semi-private at the beginning because, otherwise, it would have been too much drama for me to handle all at once. I didn’t want to dramatize my cancer. This was not easy, but to the degree I could, I wanted to control who knew. Taking charge of the situation — doing things my way — helped me focus and in some way helped me feel I was in control.

I am familiar with the emotional toll it can take on a person after finding out someone they love has been diagnosed with cancer. When my grandmother was diagnosed with ovarian cancer, I did not know how to act or hide my emotions. I’m not sure anyone does.

But, I’ve realized that — when dealing with emotions such as sadness, fear, anger and melancholia — I often do better when I’m alone. And with my diagnosis, I needed to build the right environment for me to recover. I needed to create MY comfort zone.

I wanted to take charge of my environment.
If you don’t take charge of creating your own support situation, people might try to build the environment for you. They might call other people they know who have been through cancer so they can reach out to you — which you may or may not want. Some people might bring their own belief systems into the mix, which might not be compatible with yours. Others might try to get too involved and counsel you to take care of unfinished personal business “for your own good,” or even try to take care of it for you! I did not welcome these things, even while I understood why my loved ones were motivated to do these things.

Of course, in excluding some peoples’ attention, I wasn’t completely alone. I carefully chose my support group — people who I felt knew me well enough to know how to approach me. Some had already experienced cancer through their love ones so they had some familiarity about the illness and the patient’s expectations.

I felt I could be myself around my support group. I didn’t have to worry about acting strong all the time so not to worry them. And as it turned out, I handled the emotional part of this experience pretty well.

Too much of the wrong attention.
Having too much attention scared me more than the actual cancer, at times. In a way, having to tell the world about my diagnoses would have forced me to acknowledge more completely that reality. The attention was going to be a constant reminder of what I was going through. I wouldn’t be able to pretend to feel normal sometimes. Having to deal with my illness with a small group of people allowed me to hide at times. It allowed me to feel more normal.

I didn’t want to deal with the difficulty of pushing people away.
Once people knew about my diagnosis, it would have been hard for me to exclude them if they became too intrusive. Plus I wouldn’t have had the energy to do so. I did not want to completely disregard people’s good intentions, but cutting them off would have created a stressful situation for me that could have led to misunderstandings or potentially ended my relationship(s).

Denial is a form of coping.
As I mentioned above, too much attention can be a constant reminder of what I was going through. I was never in actual denial about my cancer – not even before my diagnosis due to my family history – but I believed in my heart I was going to be OK, that it wasn’t my time to die, yet. Being surrounded with only certain family members and closer friends and cancer survivors helped me to go to that one place where I felt I was safe. There were times when I forgot I was “fighting” for my life. This was a healthy situation for me.

Exposure to the wrong information.
You want to believe people’s intentions are good, that they really care about you and your well-being. And I believe most people mean well.

However, most people are uneducated when it comes to cancer. Or, they have a lot of wrong information, based on honest ignorance, fear, superstition, religion, etc. — and they will frequently want to share it with you, even with those good intentions. Being surrounded by many of them would increase the chances of hearing something that might not be productive to listen to: wrong information about your type of cancer or your treatment, confused statistics, stories about other people who died from cancer (with details), bad info about survival rates, for example.

When people hear the word cancer they automatically think it’s a death sentence. I was not a statistic and I certainly didn’t want to be preached at regarding how I should deal with my cancer, especially from someone who didn’t have any credentials.

Pity is not a helpful contribution.
I don’t know about you, but I can identify pity right away. People really do not know how to act around you. They might feel very vulnerable in the face of your situation and their actions might come across as pity, even if unintentionally.

I cannot handle pity very well. I didn’t want people to “feel sorry” for me. I needed someone to act normal with me and to allow me to be self-sufficient, which I was.

I didn’t want to be talked about.
Fact is, bad news travel fast. And some people are always going to gossip. “Hey, did you hear? Such and such has cancer.” While I wanted empathy, prayers and love, I also wanted people to believe I would be OK, not that I was going to die from my cancer. Adding to the difficulty, I also understand that some people who care about, and who I’ve trusted with confidential information, might need emotional support too, and will be inclined to reach out to other people, including people who I might not want to share the information with.

To protect others.
I am aware of how emotionally sensitive some of my friends and family members are. I wanted to protect them. I have one cousin who I told one year later. When she visited me, she cried for a long time and this was long after I was done with my treatments! Imagine how she would have acted if she saw me looking underweight and bald. But that was the right time for me to handle her reaction not while I was sick.

I was scared to face real emotions from others because it reminded me of death.
In my case, it became weird to me to see people act differently around me. People are scared they will lose you so they try to show you how they feel about you. I am not saying this is bad but I felt it was the wrong time.

I also wasn’t emotionally ready to let people face their own fears of death and letting me know about them.

You only know how you would handle cancer and come to understand why we do what we do when you face it. I didn’t expect people to understand why I kept my diagnosis semi-private. I only wanted my wishes to be respected. And to me, that’s a helpful contribution on its own.

I simply wanted to feel I had some level of control in a situation where I knew I really had no control over.

Why am I coming out of the closet about my cancer diagnosis now [on this blog]?

Because now is when I feel ready to do so.

I also want to bring awareness. I found my cancer myself and was determined to confirm if it was despite Doctors telling me “I was too young for breast cancer.” Some Doctors tend to treat your age instead of treating you.

Because now, I feel emotionally stronger.

Posted in Awareness, c World, My Wishes, Support | Tagged , | Leave a comment

Today felt different

You’ve all heard of the saying “seek and you shall find,” right? I thought of this a lot today in relation to me wanting to know everything about my genes and the genetic mutations that might have caused my breast cancer (bc). I am now officially obsessed.

As I wrote in an earlier post, I received confirmation of an ATM bc mutation this fall, and I’m now looking into my genetic risks for many more cancers. Up to this point, I’ve wanted to learn all I can about anything that would help my family and me get some answers about our cancer prospects. Each time I’ve seen my genetics counselor I’ve felt confident and excited that we would find “something.”

But today felt different. Today, I’m not sure what I really want to know.

Today I went back for more genetic testing. Unlike last time, Doctors are now going to be looking at specific cancer genes instead of just doing the gene “sequencing” which is more general. There is less of a chance they will miss anything with these new tests. I opted to learn about all genes that are linked to all types of cancers, although I was given the option to learn only about the genes related to breast cancer. I was alone when I made the decision, and in a way, I wish I wasn’t.

Soon, I might (or might not) learn new information that I may not want to learn — but I feel I have no choice in the matter because I somehow feel responsible for helping my family. I am the only one with the opportunity to “seek and find.”

While I was listening to my genetic counselor explain the new test to me, I kept telling myself:

Rebecca, you wanted this all along. Think of your family. Think of your family! …

(I took several deep breaths while staring at the paperwork that was presented to me — reading about all 25 genetic mutations that could reveal my chances of developing ovarian, colon, melanoma, you name it. I took a while before I made up my mind.)

“I choose to know about all genetic mutations!” I told my counselor. “I am a big girl and can handle this juuust fine.”

I would now be facing a new reality that I was not sure I wanted. What if I’m a carrier of a gene that’s unrelated to the cancer I was already diagnosed with? How do I deal with that? What will the doctors advise?

And let me tell you, some genes, if found, come with crazy recommendations. For example, there is this stomach cancer gene that, if I am a carrier, the recommendation would be to remove my stomach. How am I supposed to make such a decision? Not my stomach. I love to eat!

After I signed the form saying that I wanted to hear it all, I immediately asked myself, what did I just do?

I contacted my honey after I was done with the appt. and told him all about it, specifically about the stomach gene – as you can see, that one gene really caught my attention. He bears up as well as he can on this rollercoaster ride, but he still doesn’t like to hear upsetting things. He doesn’t want me hurt ever again. So, he wasn’t very thrilled about me wanting to know about all cancer risks, and potentially having more things to worry about.

Then something else hit me.

I think one of the main reasons I want to know these things is because I need reasons to make drastic decisions about my life. Right now I am basing a lot of my life decisions on “what if’s” because there is no concrete answer about my future when it comes to my cancer. Maybe if I get “the clear” with these gene tests it will encourage me to finally make a decision about building my family. At the same time, if they find a serious mutation for me, maybe this would be all I’ll need to know to convince myself that such choices are limited. Either way, knowing would be helpful to me.

Yes, today felt different, but I realize I still have reasons to want to learn more about my genes. And although I don’t feel excited about getting my results in 5 weeks, I feel I am doing the right thing.

Are the 5 weeks up, yet?

Posted in Awareness, Follow-ups, Genetics, Paranoia | Tagged , , , , | 3 Comments

A “mouse” moment

reb

Rebecca: How come no pap test today?

Are you ladies ready for this one?

Today I go to get my pap test done at Sloan hospital like I usually do, every year. After waiting for one hour in the examination room, my GYN comes in and says…

“So we are not doing a pap today because yours was normal last year. We are only doing a manual examination.”

“Huh?” I say.

“Sloan is no longer performing pap smears yearly…it’s just too many of them.”

“Are you serious?,” I say, laying there. “I don’t mind getting mine done today though.”

“Nope. We are not doing it,” she says, as she surprises me with a rectal exam (apparently the best way to feel the ovaries is to go through both ends.)

“How do I tell if I have cervical cancer other than getting the pap test done, today? OUCH!” (I am pretty sensitive there due to Tamoxifen.)

“You’ll notice some abnormal bleeding, for example. Now, you’re too tense. Relax your legs. I can’t see your cervix if you are tense.”

“I mean, you’re already in there, why not swab some cells and send them to the lab to check them out?”

“No. We are doing the pap today. And you’re still tense.”

Not only was I tense because of the examination, but also because, unexpectedly, I was not being allowed to use one of my weapons.

We cancer patients have limited weapons to fight cancer with. Preventive testing is one of them. This particular weapon was taken away from me today and I am unhappy about it.

Also, something else occurred to me, something that I think about often: Is this change being done because I’m part of my hospital’s research?

I had a “mouse” moment.

You see, ever since I’ve been diagnosed with breast cancer, I get the feeling I am now part of a “system.” I know I’m either directly or indirectly involved in research since they can’t figure out how to cure cancer yet. I couldn’t help but to think that they are trying to figure out if it makes a difference for women to do pap tests yearly vs. doing them less frequently. And I am in the “experimental group” instead of the “control group.” And would they tell me if they were using me for research?

…………………………………

When did they change the protocol for these pap tests?

I honestly don’t get it. Wouldn’t I want to know if something was brewing in there before it’s too late?

I am too paranoid to let this one slide.

I am scheduled to see my other GYN in June for my semi-annual sonogram. (Yes I have two GYNs — my personal GYN and the one Sloan assigned to me as part of my cancer treatment. What kind of commander would I be if I didn’t have two?). I’ll tell my personal GYN what just happened to me today and will see what she says about this change. Meanwhile, here’s a link to the latest developments on this related subject.

Posted in c World, Follow-ups, Paranoia | Tagged | Leave a comment

Look closer

DSC_0436There is a painting in our livingroom from my native country, the Dominican Republic. I am in love with this painting because it reminds me of my happiest times growing up with my sweet grandmother. One day, while looking at the painting, it occurred to me that if heaven exists —and we all wish it does exist—I would like my scene to be similar to that in the painting.

My fiancé has trouble talking to me about my death; obviously, he doesn’t want to lose me. But I found a way to make him a bit more comfortable when speaking about me leaving him first, at least that’s what I’ve sensed, and it is related to this painting. Of course, there is no easy way to talk about death.

“Look closer,” I tell him.

“If I ever leave you first, look closer at the painting from our livingroom. You will see me and my grandmother together. I’ll be running through the sugarcane fields and wondering  if you are watching me. Wishing you were there with me.”

He takes a deep breath and looks at me with sadness in his eyes while holding my hands. He does pretty well with holding his emotions in but I can see his fears. I have them too.

“Eventually you will join me, if that is still your wish years from now. Either way, know that I am near,” I say to him.

“I want to be with you wherever you are. Take me with you,” he says to me.

“I am not allowed to take you with me if I go first. But always remember to look closer. I will not be too far away from you.”

I notice a peaceful look on his face. After all …

… Hope is the last thing we lose. And hopefully it will never be lost.

Posted in My Wishes | Leave a comment

Decisions after cancer

I thought that going through the treatments for my cancer was going to be the hardest part of this journey. I would lose my hair, throw up a few times, be constipated (or have diarrhea), eat less – which would have been difficult for me since I enjoy a big meal— feel tired and weak, among other side effects that could temporarily come with cancer treatments.

Truth is, I find survivorship to be the most difficult part of this journey.

For example, I’ve been contemplating the idea of starting a family. I harvested my eggs prior to treatments to allow myself that option. But now that it’s getting closer to this possibility, there are some concerns.

The decision about having a child may impact my outcome. You see, my tumor’s diet consisted of my estrogen and progesterone.   The good part of that is that it makes me a candidate for a daily Tamoxifen pill, which is a good treatment for my type of cancer. Tamoxifen suppresses estrogen. But the problem is, I can’t be pregnant while I am on Tamoxifen. And, my Onco now wants me to take this preventive pill for 10 years instead of 5 years, my original plan. The latest studies show that 10 years may be better.

I will be in my mid 40’s when I am done with Tamoxifen. However, I want a child. I want to build my family now, while I am still young (not saying people in their 40’s are old, but it could be a riskier age for pregnancy). I don’t want to wait until I am in my mid 40’s. I also don’t want to base my life decisions on “what if’s.” There is no evidence that a pregnancy could put my life at risk. But there are no guarantees either, no matter which choice I make. That’s the saddest part for me.

Oh! And did I mention that my doctors recommended that I remove my ovaries by the time I am 42 because of my ovarian cancer risks? Well if I am going to go through this surgery, I might as well get a Hysterectomy. This would def. end the possibility of becoming pregnant.

I am aware I can always adopt but it’s not what I want to do right now. I want to feel my child growing inside my belly. I want to hear his/her heart beat. I need to experience the miracle of giving birth. I want it all.

So here I am wondering what would be the right choice for me. The decision will not only affect me, but my love ones as well. I am not sure how viable it would be for me to get pregnant after cancer. My Onco is not thrilled about me getting pregnant but she is not completely against it. There is no study showing pregnancy would bring my cancer back, but theoretically speaking, it is possible. As you know, pregnancy raises the level of estrogen in the body by a lot, and I will not be protected if cancer were to develop again.

I sometimes worry about the process of pregnancy – how painful would childbirth be? Would I survive it? But I often hear mothers say that the hardest part is not giving birth or being pregnant. The hardest part is to raise that child. Well, this is parallel to how I am feeling right now about my cancer journey. Yes, treatments can be hard but Survivorship has its challenges too.

Posted in Coping after cancer | Tagged , , , | Leave a comment

Multi-gene panel for cancer predisposition: Genes, Risks, and Recommendations

I understand that not everyone wants to know about their genetic risks for developing diseases, but some people do. Finding out about my gene has helped me make educated decisions about my life-style and health screening options. So, for those interested in knowing which mutations have been identified, here’s a list: Multi-gene Panel for cancer Predisposition.

If you decide to see a genetic counselor, she/he may have more recent information. Science is continuously advancing and there may be new developments already in the works.

 

If you decide to learn more about your genetic makeup due to a cancer diagnosis, and have been found a carrier for one of the above genes, you may be a candidate to participate on Prompt. I am currently a participant. Let’s help scientists and doctors learn more about cancer, so that eventually,  they can create better target treatments for everyone. And who knows, maybe a cure too.

Posted in Genetics | Tagged , | Leave a comment

Seeking closure

After being diagnosed with breast cancer at the age of 32, and with the number of cancer diagnoses in my family, you bet I was going to try to find out why I got it. Although we don’t really know why we get cancer, I was “lucky” to find a possible cause to mine.

First, let me give you a breakdown of my family cancer history (all from my mother’s side. No cancer on my father’s side. Yet.):

Great-grandmother – breast cancer
Great-aunt 1 – breast cancer
Great-aunt 2 – breast cancer
Great- uncle 1 – prostate cancer
Great-uncle 2 – prostate cancer
Grandmother – ovarian cancer
Aunt – leukemia.

You see now why I wanted to look closer.

As soon as I was diagnosed with breast cancer, a group of genetic “investigators,” as I called them, at my hospital came to my rescue, wanting to know why I was diagnosed at such a young age. I wanted to know too, so I opted to be tested for the familiar BRCA1/2/BART genetic mutation tests which are linked to breast and ovarian cancers. Those results came back negative for me. I was simultaneously happy and skeptical. It didn’t make sense to me that I didn’t have a mutation considering my family history.

As the genetics team explained to me, these results didn’t mean someone else in my family doesn’t carry the BRCA gene(s), or that I myself don’t carry a different mutation. At the time, scientists had only identified a few mutations (such as the BRCA), and I was negative for those specific to my cancer.

But I was, and still am, determined to find out more about my cancer. I continued to look for more test options. Eventually I took an opportunity to do genome sequencing testing. As the genetic team described it, “sequencing” is a spellchecking process that looks at the sequence of “letters” in each gene, to find differences as compared to other people’s genes. Scientifically, a change, or spelling mistake, in a gene is called a “mutation.”

I had the option to learn about my genetic makeup as a whole or just focus on the results that will potentially impact my cancer outlook and treatment choices. I chose to learn about (1) genes related to all cancers and (2) genetic factors that may impact my future children (such as genes related to birth defects). I chose not to find out about my genetics for other common diseases such as Alzheimer disease and Parkinsons diseases. Why would I want to stress myself with knowledge about something else I cannot control or prevent? No thanks.

When I came to see the genetics team to receive my genome sequencing test results, my counselor had a big smile when she saw me. She knew how desperate I had been to get answers about my cancer. “I have good news,” she said. I stopped smiling and braced myself. Was she going to tell me I had no mutation?

She placed the results on the table and allowed me to read them. I had one mutation: ATM (ataxia-telengiectasia mutated) — a mutation associated with a moderate risk for breast cancer, and some lesser risks for other types.

“You look disappointed, everything OK?” She asked.

I was surprised. Even though I have breast cancer, I was expecting they would identify a mutation that was linked to ovarian cancer, too.

Let me explain.

I always feared getting ovarian cancer because of my grandmother. I saw her go through it. Seeing her go through all that pain affected me a lot, especially because she raised me. She was genetically the closest of my relative to have been diagnosed. In my mind there was a possibility I would get it too. I wasn’t worried about breast cancer because the only one who developed it from my family was my great-grandmother. In fact, prior to my diagnosis, my general doctors had told me that that particular diagnosis was too far away from my generation, so I had nothing to be concerned about.

One thing I learned after my diagnosis though was that both breast and ovarian cancers are linked. Once you are diagnosed with one, your risk of developing the other goes up. I had an observation too: My grandmother’s pathology report and mine were very similar although our cancers developed in different parts of our bodies. However, my genetic mutation was linked mainly to breast cancer not ovarian cancer.

Having identified the ATM mutation, my doctors advised me to get yearly breast MRIs, in addition to getting mammograms, which I had already been getting due to the density of my breasts. No additional recommendations were made.

Some people choose not to know about their genetics, especially those who have not been diagnosed with a disease. I can imagine the level of worry they may develop after learning they are a mutated-gene carrier. But it was different for me. For me, the more information I receive the better. Knowing my risks can help me take preventative measures. Plus I had already been diagnosed with cancer. I was desperate to find something to blame. And for the first time since my diagnosis, I felt a sense of peace. I was getting part of the answer to my puzzle.

There’s still a chance my mutation didn’t cause my cancer, but there is a high chance it did. And this brings me closer to finding closure.

I will be performing more genetic testing in February, specifically to look for risks associated with breast and ovarian cancers. I will have more information to share with my family— at least those who are open to receiving the information. But that is for another post.

Posted in Genetics | Tagged , , | Leave a comment