Mammograms: Always on trial

You’d think I’d be used to it by now. That I wouldn’t feel a need to write about it after all this time. But this isn’t the case. And I am not too sure it’s any other survivor’s case either.

Once you’ve been diagnosed with breast cancer, getting mammograms become an anxiety-inducing event. It doesn’t matter how many “clear” results you’ve received post-diagnosis. You start to worry days before your scheduled appointment. For me, it’s more than just the fear of experiencing a cancer recurrence.

Approaching every mammogram at my hospital feels like preparing for “Judgment Day.” First, I schedule my mammograms for a time when I think they won’t interfere with me psychologically. Some patients want to postpone this test until after they’ve had their vacation or celebrations. Me? I want to get a “clear” prior to even trying to enjoy myself, otherwise, I spend my whole holiday stressing about it.

At least I have some control over the timing. But once I show up to my appt, I no longer can control anything. It’s the way this procedure is conducted at my hospital that distresses me.

You get to the reception desk and provide them with your name and date of birth. You’re then asked to sit in the waiting room with other women who are also waiting to be examined. First, I need to get undressed from the waist up and wear a hospital gown. I follow the instructions. I sit with the other patients who look just as nervous as I do but are trying very hard to make the situation feel casual. No one initiates a conversation. We all act as if we were at a regular clinic waiting to be called for our yearly check-up. Some of us grab magazines to read while others just stare into space. From time to time, I take a peek to see if anyone else is as young as I am. And almost every time everyone is much older than I. A thought runs through my head: “couldn’t I have enjoyed my youth before having to deal with this shit?”

There are several mammogram technicians who frequently come out to call on different patients. Once I hear my name being called, my heart beat accelerates, as I am aware of what they’ll be looking for and what I don’t want them to find.

I go into the mammogram room with the technician and get asked questions about symptoms and family cancer history. All over again. I’m then asked to remove the gown to start the “pancake” procedure. My breasts get flatten by the compressor plate which allows for accurate imagery. Several pictures are taken. I start to wonder if all this radiation is activating the bad cells, which can happen due to my ATM gene. It is a very uncomfortable test. But to me this isn’t the worst part. The worst part is the wait and how each group of women is kept in a waiting room, then moved to another room, and then moved to another room, depending on what the doctors see. It feels as if we’re waiting for a verdict, except there is no one to defend us. And if we are lucky, we get to go free that same day.

After I am done with the mammogram, I’m asked to go to a room where all the patients anxiously wait to hear their verdict. This is the time when I exceed the number of texts on my phone plan and sit restlessly. Often, a TV is on, broadcasting bad news about the world, making the aggravating atmosphere even worse.

I eventually hear nurses call each patient to inform them about their results. After the interaction between the nurse and the patient, you either see the patient leave or go into yet another room for a different type of scan. This usually means they’ve found “something” suspicious and they need to further investigate. And this is the worst part for me. Seeing how the patient, very slowly and with a look of concern, follows the nurse to the other room. Despite their fears, they proceed anyway. It is devastating to just watch. I also can’t help but think I might be next. After all, although we’ve been through our treatments, we’re never really done. We are not cured.

Finally I hear my name called. I follow the nurse who conveniently stands between the exit door and the sonogram rooms – where patients need to go after something suspicious is found. I get clear results (at least, I have so far). I am handed the paper stating those results and my recommended next appointment date. I take a deep breath and thank the nurse for delivering the good news. I immediately head into the bathroom. I stare at myself in the mirror for some time, still in disbelief of why I am there in the first place. I think about the other patients. I always do. Especially, I think about those who have passed from my family. From my support circle. I cry and I feel both grateful and guilty for getting another “free pass”. I get dressed and go back into the world where I am expected to act as if I am completely done and shouldn’t worry anymore. But I still worry. And despite my fears, I continue to live my life anyway. Until the next verdict.

Posted in c World, Follow-ups, Mental games | Tagged , , , , | 13 Comments

The Tamoxifen Show: Today’s episode: A dramatic uterus

Recently, I shared my experience of jumping through hoops to get my pharmacy to order me the Teva brand of Tamoxifen – the brand I’ve been tolerating well so far (click here to read the story). As I’ve discussed, fortunately, I haven’t yet experienced what I consider to be the worst side effect of this medication – one that I’ve been thinking of as a “dramatic uterus.”

A “dramatic uterus” is what I call a uterus that is not behaving normal – for instance, heavy bleeding or not bleeding at all while being pre-menopausal, polyps, thickening of the endometrial lining, or in worst cases, endometrial cancer. I am definitely not ready to begin facing such drama, because I am still deeply attached to the hope of one day having a child.

However, lately I’ve been experiencing some changes with my menstrual cycle. My doctors seem to think it’s all related to stress. But we also know that Tamoxifen can contribute to these changes. And as I get older, I know that other age-related issues can come up.

Over the past few months, my periods seemed to be fading away — until a few weeks ago, when I experienced very heavy bleeding (but still within the “normal” 21 day-cycle range). Still, I panicked, as usual, and contacted my GYN who suggested I come in for a sonogram the following day. We decided to check my hormone levels so my doctor could look at the entire picture and make a recommendation.

Now, if you’ve read enough of my posts, you would probably guess what I did next. I reached out to Dr. Google and to other patients who have experienced similar situations. And basically, it is what it is. These cancer treatments cause a lot of collateral damage and we either deal with them or make a decision to stop them. Both are very hard decisions to make and hard courses to follow.

After all my examinations and tests, my doctor concluded that I’d just had an unusually heavy but otherwise normal period (for the first time in a while). She said that my uterus doesn’t need any procedure done at this time – such as a D&C or a biopsy – because there was nothing really suspicious (thank goodness!). She reminded me that I am still young and my ovaries are still functioning. “If you have sex right NOW, you can get pregnant!” she stated bluntly. Apparently all that bleeding could have been related to the fact that my body is still trying very hard to adjust to the Tamoxifen AND to act normal, even after all these years of treatment.

My GYN suggested I do another sonogram in three months. She also talked about my level of stress during the last year, as she has noted some changes in me, including loss of weight. She is aware I am under too much stress at work and recommends that her patients be open with their employers about their health risks, and the potential that excess stress symptoms can interfere with patients’ treatment and progress. Work is always a complicated situation when it comes to managing health issues, and I agree that patients need to speak up for their own well being. And hopefully their employer will be supportive.

I am meeting with my Oncologist next month to have a discussion about my overall health plan. She has also expressed some concerns about my level of stress.

As many of you already know, I have no children. I still would like to have a child, if my circumstances allow. The thought of cancer taking that option away from me makes me feel emotionally devastated (yes, I am aware of options such as surrogacy). Having a healthy uterus represents hope for me, even if I am not trying to achieve pregnancy at this time.

It is true I have taken a long time to make the decision to get pregnant. It is a hard decision after all, especially with my health situation, but my Oncologist seems supportive and is open to this idea. However, some people judge, and feel I’ve taken “time” for granted. Apparently it is my fault that I have not taken the risk to have kids, as someone insinuated recently – such kindness. (Not that stopping Tamoxifen and getting pregnant will automatically cause a recurrence, but it’s still a risk.) I wish people would just stop blaming patients for their circumstances, shut their mouths, and mind their own business — especially when patients are trying to stay alive as long as possible while dealing with survivorship challenges. Unless these people want to offer to carry my child or offer some other rational solution — then we can talk business.

So, going back to this latest episode with my dramatic uterus, maybe my uterus really isn’t acting too dramatic at the moment, after all. I hope it stays that way for a while though. Dealing with one cancer is bad enough.

Posted in Awareness, c World, Tamoxifen | Tagged , | 15 Comments

They said it would be the easiest part

radiation-1At first, the most annoying thing about radiation was having to be at my hospital everyday for 21 consecutive days. The burns caused by the radiation were not pleasant, but skin heals. I have to say though that, emotionally, radiation was worse for me than chemo.

I did not cry during my chemo infusions, but I did during radiation treatments. I am not sure if it was related to the fact that I was coming closer to the end of my treatments, and I was just then realizing what I had gone through the previous six months. During the beginning of my cancer mess, I was in a I-have-to-take-care-of-business mode. So there was hardly any time for me to really absorb what was happening to me. Everything moved so quickly and slowly at the same time.

Because I was told that radiation would be the “easiest” part of my treatments, I did not ask anyone I knew to come with me. Each daily appointment was no longer than 30-45 minutes anyway, including the wait. I thought I could handle it juuust fine.

I had already gotten my “simulation” done days before starting my radiation treatments. The radiation team had precisely identified the area on my body that would be radiated. My body was positioned carefully, face down. And I had to remain still. The radiologist put marks — permanent tattoos (dots) — on the breast and surrounding areas to target the treatments. These steps weren’t too bad.

Finally, my scheduled first morning of radiation had arrived. The patients in the waiting room were called quickly, one after the other. Each treatment went fast, adding a level of intensity and urgency to the situation. Eventually, it was my turn. I was asked to get undressed from my waist up and given a robe. They explained the potential side effects from getting radiation, including a secondary cancer. I had to sign the consent forms that stated the hospital was not to be held responsible. (I would find out two years later that my mutated gene, ATM, can be activated by certain amounts of radiation exposure. But my hospital said they would have treated me with radiation regardless.)

Then, I was brought into a room to take photos of my breasts. They also took a picture of my face. I don’t know why they did that. Maybe for identification. In the photo I looked like I was being charged with a crime I did not commit. I found that moment to be quite unpleasant and I wanted it to end as quickly as possible.

I entered the cold room and removed my robe. I positioned myself face down on this really hard and narrow table. I was asked not to move, and eventually was left on my own listening to this melancholy music they played. To the side of me were several brain radiation masks (once you’ve seen one of these, you’ll never forget it). Suddenly, the robotic machine started moving around me. Several people watched me from behind the glass. The invisible laser was hitting different areas of my breast and surrounding areas. I didn’t feel a thing but watching this machine move around me, from one side to the other, made me feel invaded. I also felt isolated. At that moment, I wanted to run away and never come back, but then I remembered I could never run away from cancer. I also remember trying to hold back my tears, and many times I was unsuccessful. Something about that machine shooting an invisible laser, and me not being able to move while being watched by an entire hospital staff staring coldly from behind a window that made me feel subjugated.

After each treatment, I would walk out of the room and see the radiologists performing treatments on other patients. At times it was hard to ignore their computer screens, where different parts of peoples’ bodies were exposed. There were just too many. I felt a sense of guilt, knowing that some of those people probably were worse off than I. It was a very sad scene. But it wasn’t my choice to be there.

And there was something else: on my way out of the office, I would encounter kids sometimes. There I was thinking I was too young to be dealing with cancer (32 years old), and then a child would put things into perspective for me. Of course, there’s no right age to face cancer, but it’s just wrong seeing a child go through this awful experience. They should be playing games. Not doing this.

Towards the end of my radiation treatments, I felt extremely tired, both physically and emotionally. The overwhelming stress I had dealt with for several months was finally catching up with me.

Over the course of this whole thing, each treatment — the surgery, the chemo, the Tamoxifen — has had a different effect on me psychologically, but the radiation days haunt me most. Radiation was a reinforcement of the loss of control I felt – the ‘scientist’ behind the glass, not being able to physically move while being treated, the burns on my skin, and the burns on top of the burns. I could not avoid those 21 consecutive days in order to get the best outcome possible. And everything was against my impulse.

It was over five years ago that I completed my radiation treatments. I still experience pains on the radiated area, which is also a reminder of what I went through. This is part of the collateral damage we deal with, even after surviving a traumatic event such as cancer.  Although I am done with those treatments, I still feel like it isn’t over. Survivorship is difficult, especially when dark memories haunt us.

Posted in c World, Radiation | 17 Comments

Tamoxifen Detective: How I got my Teva back

tevaLast year, I shared the story of how I was given a different brand of my Tamoxifen at the pharmacy. It was made by Mylan instead of Teva, the brand that I’ve been in a long relationship with (click here to read the story). I felt confused. At the time, I hadn’t realized there were different brands, and I soon learned that patients could experience different side effects from each of these brands due to the fillers each manufacture uses. (The active ingredients are supposed to be the same though.) Patients can try different brands to see which has the least side effects for them.

This month, I’m learning from online support groups that many Teva patients are experiencing the same situation — their pharmacists are recommending different brands other than Teva. But each patient is being told a different story – either that the Teva product is being discontinued, that there’s a shortage, etc. What’s going on?

I’ve been taking the Teva brand for years now, and although I complain about this medication a lot, I am really not doing too badly on it. My uterus is still healthy (knock on wood!) and I don’t experience hot flashes – two biggies for me. The thought of trying a different brand concerns me. I want to stick with the devil I know. I once did give the Mylan brand a try for a few weeks, and I experienced dizziness and loss of balance, to the point where I thought I was having brain mets! This side effect was scary. I demanded my Teva back, and the pharmacy eventually ordered it for me. I felt a huge sense of relief, and suddenly the side effects that Teva did have on me were more acceptable.

This month I had another worrying interaction with the pharmacist. She stated that the Teva brand had been discontinued by the manufacture, and that my only option would be to go with the Mylan brand. I explained the symptoms I had experienced with Mylan, but the pharmacist pretty much ignored my concerns and suggested I take it anyway. I refused, and left the place.

I went online and did some research, hoping that the 8 Teva pills I had left would allow me enough time to find what I wanted. I learned that, apparently, Teva was acquired by a company called MaynePharma, so I reached out to them directly. The friendly representative I spoke to confirmed that they bought the Teva brand, and the good news is that the fillers are exactly the same – same exact drug and manufacture process. I was given the National Drug Code (NDC) for the 30-day supply (#51862-446-30), and I was instructed to provide this code to the pharmacy so they could place the order for me. MaynePharma even suggested that my pharmacy give them a call, if they experience any issues with the order.

I returned to the pharmacy, hoping to get better luck this time. The pharmacist looked up the NDC # and stated that the drugs would not be available until late March, and that there seem to be a shortage across the board for all the different brands of Tamoxifen. She also refused to contact MaynePharma.

I tried other pharmacies, including the one at my hospital. They all offered me the Mylan or Watson brand. No Teva.

Eventually, I found a pharmacy that would work with me. The pharmacist I spoke to was very empathetic when he heard the struggle in my voice on the phone, as I tried to explain my fear about taking the Mylan (or Watson) brand. The pharmacist said he would try to order it for me. And I am happy to report that I was able to get my Teva brand after all — just a few days later.

An experience like this adds to the difficulties of survivorship for patients like me. Some pharmacists do not realize how we develop a relationship with the drugs we are dependent upon for our lives. After going through a traumatic event, such as cancer, we desperately seek some level of normalcy or consistency. And this is so hard to accomplish, especially when we have no choice but to work within the pharmaceutical system. I don’t like changes forced on me, especially when those changes would make my life more complicated than it already is.

Yes, we have no choice but to take the treatments that are available to us, but it would be helpful if we could be allowed to gain some small level of control back after losing so much— even if it’s as simple as not having to jump through hoops to find and keep the drug we want and need.

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A side note: I’d like to encourage everyone to ask their Oncologist what they’ve heard about the Teva acquisition. Was there a reason it was “taken off the market” in some areas? And please come back and share in the comments section.

Posted in c World, Coping after cancer, Tamoxifen, Treatment | Tagged , , | 34 Comments

My Babadook

(This post contains spoilers about a recent movie.)

I took some extra time off from work during the holidays to recharge. 2016 was a very tough year all around. I was looking forward to doing fun things to distract myself and see some friends I haven’t seen in months. I really planned to end the year in a better mood, but instead I got sick with a terrible cold. So I stayed home and tried to rest, something else I haven’t done in a while. I thought catching up on movies would be a fun thing to do. Among the movies was an Australian-Canadian psychological horror film I’ve been wanting to watch, The Babadook.

The Babadook is about a woman who loses her husband in a car accident as they drive to the hospital, where she delivers her baby that same day. She raises the child on her own while dealing with grief, all the time becoming more and more threatened by a monster from her child’s picture book. I interpreted the movie’s Babadook monster as a physical representation of the woman’s unresolved emotional states of grief and denial. Both emotions affected her relationships and eventually took over her home and sanity. It took the woman years to start creating some meaning and to bring back some normalcy into their lives. In the end, the woman’s Babadook wasn’t completely gone. She kept “it” in the cellar where she would visit it from time to time. She did not allow her child to be exposed to her pain anymore, but rather learned to live with it, keeping it separate.

In the movie, I saw how the woman was being treated by friends and family while she was deep in her long-term pain. Her sister, who appeared to be her only family, didn’t want to deal with the heaviness and would often avoid her or challenge her. “It has been seven years!!” she yelled at her widowed sister one afternoon. This lack of empathy bothered me because I can relate to it. It reminded me of the times I’ve been asked to move on from my grief or from cancer. I also saw myself in the grieving woman, and it made me reflect on whether or not I’ve allowed myself to sink in my own darkness, and how long I’ve been there.

I believe in allowing ourselves to go through all the emotions any given situation provokes. And when the situation is painful, we decide how long the healing takes. I don’t think someone else should be telling us that we are taking too long with our grief. It’s personal.

I’m not discounting our families’ or friends’ desire to see us move past cancer. I know they can feel scared for me and helpless to know what to do about it. Of course they want me to move past it. I wish the same.

But, in my case, cancer is my Babadook, one that I manage to keep in my “cellar.” I deal with it the best I can. I can’t completely walk away from it because I’ve considered it to be part of who I am. And yes, it has defined me in many ways. It has pushed me to make some sacrifices too. I’ve needed to distant myself from some relationships in order to allow myself to just be, while allowing others to take a break from my reality. Because yes, it can be overwhelming and painful for others who haven’t been in the same situation we have.

In the movie, I appreciated how the writer used the last scene – when the woman visits the Babadook, now locked in the dark cellar – as a metaphor. And this is the message I took with me. The scene acknowledged that it is important to recognize and deal with our oppressive emotions. And that it is even therapeutic and meaningful to keep those fears and emotions alive, to allow us to keep up our awareness and be vigilant over the problem. It is an ongoing effort to ultimately reach a level of inner peace and create that sense of balance we all crave.

Posted in Awareness, Coping after cancer, Mental games, Reflections, Self Awareness, Support | Tagged , , , , , , , | 7 Comments

Too formal

1307966-sketched-red-haired-white-female-doctor-caring-for-a-young-cancer-patient-poster-art-printI find that the culture at my cancer hospital is too formal. And sometimes I need a hug or two. Maybe I am asking for too much.

I recall my first visit. I first met with my surgeon, who was distant and to the point. He immediately did a breast exam and proceeded to tell me what the treatment plan would be for me.  I started to shake, sitting across from him. He felt bad and held my hands, “this is serious but we’re going to treat you to get the best outcome possible, don’t worry,” he said. My surgeon was very kind to me. He was also very competent. I remember him asking the nurse to contact a counselor so I’d have someone to talk to. That counselor came to meet me right away after I was done with my consultation.

Then, for my first oncology visit, I initially met with a medical resident. I thought that was odd, considering it was my first time meeting with my oncologist for such an important appointment. At the same time, this also gave me the impression that perhaps my case was not too serious. However, the resident was a bit too dramatic for me. She took long pauses between words as she drew little images of cells on a piece of paper, “so…this is…your…cell…and this is…your cancer…” She was showing me the survival rates if I opted to take chemo, Tamoxifen and radiation as my treatment regimens. She then proceeded to show me how Tamoxifen binds with the receptors so cells won’t feed from the estrogen – all done through her amateurish drawings. I already knew I was taking all the necessary treatments for my cancer. And where was my oncologist?

I wanted a hug.

Eventually, my oncologist came into the room. From the start, Dr. O was very formal and by the book. She immediately spoke about research and statistics and explained how treatments were going to benefit my case.  And I was just sitting there with my head tilted, staring at her, without really understanding what those research numbers meant for my situation. And at that point I did not care. I had already focused on the 86% 5-year survival rate the resident had given me if I took all possible treatments.  I couldn’t deal with anything else at that moment. Dr. O. was very competent but I got no hugs on my first consultation.

After several visits, I decided I would try to get my oncologist to be more affectionate with me, even if this was risky for her. I started by giving Dr. O a hug at the end of each consultation. Then, eventually, I started welcoming her with open arms as she entered the room, “Dr. O, so good to see you!” and she would reciprocate. Now she’ll playfully say things like, “Where is she? Where is she?! There she is!” as she enters the examination room. And yes, we hug, always. It feels good. Now the experience feels more human to me. I feel less tense and less afraid.

I continue to see my radiation doctor. Everything about this experience has been very “robotic” and emotionally draining— more so than chemo. It has been hard for me to get close to Dr. R. She is very serious and just takes care of business. I’ve tried getting her to be more warm after all these years, and sometimes I’ve managed to make her laugh with my jokes. Who would have thought I could joke in an oncology room? But there is one thing I appreciate about her. She is very flexible with my care, which is why I enjoy seeing her once a year. I’ve told her about my desire to build a family, and out of all the doctors I’ve seen she has encouraged me the most. Dr. R feels very confident about my situation and always encourages me to have quality of life, even if it means I stop taking Tamoxifen. Next time I see her, I am going to hug Dr. R, whether she is emotionally ready or not.

I guess you can say I have a good balance among all my oncology doctors. They all contribute to my physical and emotional care, one way or another. I am truly grateful for every one of them.

I can’t completely disregard the feelings of these oncology doctors. I am sure there’s a reason why my cancer hospital is so formal. What happens there is very serious. These doctors lose patients all the time. It must be tough for them too, which is why they don’t personally get too close to their patients. I still don’t know how they do it, but their jobs are very important and necessary. They also need to be kind to themselves in order to keep performing their responsibilities.  But I must tell you, a hug can make a big difference in a patient’s care. Maybe I am asking for too much.

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How would you describe your relationship with your Oncologist(s)?

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

Wish list

giftsThere is this writing program sponsored by my cancer hospital that allows patients to express themselves and get an opportunity to publish their work. Each year, I try to write a piece and submit it for publication. For this year, however, I tried to write what I didn’t realize would be a complicated story for me – a lot of buried emotions came alive.

I’ve been focusing on childhood stories about my grandmother and me, and this year was no different. I was inspired to write about that one Christmas when I did not get any presents. I thought it was an interesting story to share for so many reasons— the cultural aspect of it and the feeling of injustice from a child’s perspective were both intriguing topics for me. No one ever spoke about that Christmas in my family. I never mentioned it either, mostly because I felt embarrassed. (For years, I wondered what I had done wrong that Santa did not forgive me for!). I now understand that it was emotionally painful for everyone involved. But still, this experience was such an eye-opener for me. Whether it was intentional or not, I think this was the first day I had a taste of adulthood – when I realized that Santa doesn’t always show up, and you sort of have to roll with it.

I never finished writing the story this year, mostly because I got a late start. The thing that was surprising to me is that, as I was writing it, I started to cry. After all those years, I did not think this specific memory would affect me. But I didn’t cry because of the sadness I remembered feeling that year. The tears came from something else.

The last month or two, my fiancé had been asking me for a wish list to get some ideas for presents for me. It was very hard for me to come up with a simple list of things for him and his family to consider. I haven’t really celebrated the holidays for a long, long time. And to be honest, I’ve always considered it to be just another distraction. And the older I get, the more complicated I find it to be. I know it’s a good reason to reconnect and just do little things for one another – a reason to do some escaping from reality perhaps. But even doing these things has become overwhelming for me. Where did my Christmas spirit go?

But going back to that childhood story I could not finish; I’ve been thinking about why I felt so emotional about it. I realize that as I get older, my wishes become more elusive. I stopped wanting anything concrete long ago. What I really want can’t be purchased or recovered.

Looking back to that Christmas day when Santa didn’t come, I realize now that, as poor as we were when I was a little kid, I really had it all. I was just a child, who like everyone else, didn’t realize the richness of her world. It didn’t matter that there were no presents under my Christmas tree that year. I had a wonderful home where I always felt loved, protected and cared for. I had my innocence, my health (without the need of constant monitoring), my youth, and the best grandma anyone could ever ask for. I guess those would be the items I would put on my wish list today, if I could. The things that I wish so much I had back in my life.

I know many of you probably feel the same way too. And it’s totally OK to miss what we once had, even when there are other blessings in our lives.

Wishing you all kindness and a great sense of peace for the New Year, and the desire to create new meaning in your lives.

Posted in Awareness, Family, My Wishes, Reflections | Tagged , , , | 11 Comments

My Caregiver

my-caregiverI feel like I’ve taken my caregiver for granted. I know he is always there, waiting to please me. Always aware of my struggles and trying to comfort me in every way he can, even when he himself doesn’t have the energy to invest and may feel more fearful than I do. But he cares. A lot.

My caregiver is also my partner, so he plays two roles simultaneously, although sometimes it feels as if he is more of a caregiver to me. After dealing with the trauma and collateral damage from cancer treatments, navigating the relationship can get complicated. There’s been some loss of identify for the both of us.

I’ve never really taken the time to fully understand the scope of his responsibilities – those he has created for himself and has committed to — and the complexity of his emotions because I am too busy trying to deal with my own. I know that being a caregiver is no easy job. He has sacrificed a lot for me. I am so grateful for him but I also feel guilty because I am not able to be there for him as much as he is for me. I depend on him emotionally a lot of the times, and he is so focused on me, but I haven’t been able to offer the same level of support.

Intimacy also feels weird for the two of us (Tamoxifen is no help). We love each other. That is not the issue. The issue is we’re traumatized from this cancer experience that hasn’t gone away for either of us. We want to feel normal again. To be OK with the realization that things won’t be back to the way they were. We shelter ourselves together, but creating a safe place has become challenging.

And I worry about his state of mind. Lately, I’ve noticed the emotional changes in him. He is not doing too well. There’s just too much going on all around us. Too many problems to solve. Too many losses. Too many forced/unwanted changes. His fear of losing me too soon has impacted his mental and physical health. And still, he chooses to stay.

I started to notice his debilitation this past summer. I’ve noticed his teary eyes from time to time. He is not only aware of my health, but he also knows about my friends – those who are stage 4. He is the one I can turn to right away to talk about everything, including my worries and sadness. But he has no one to reach out to. My caregiver/partner is the isolated/quiet type of guy, always keeping things inside. This doesn’t mean he is not crying out for help.

I am no help. It’s hard for me to keep things to myself. I know other patients can hide their true feelings and keep some upsetting news to themselves so as not to overwhelm their loved ones. It’s not like I express every single thing that’s on my mind and heart, but I say enough to make him worry or upset him.  Having cancer has become too casual for me. It’s just the way my situation played out. In a way, I think expressing myself is healthier for me, but it might not be necessarily healthy for others (and it’s hard to keep a balance). Sometimes I catch myself saying insensitive things to him, like, “you should be used to this life by now” or “come on, learn to look at death in the eye.” It’s horrible. I know. Sometimes I feel cancer has turned me into a jerk. But in reality, I am really telling those things to myself.

I think as a caregiver he knows and understands my frustrations. He knows I never mean to hurt him. It still doesn’t excuse my behavior. I need to be more mindful when I express myself to him. I mean, just because he appears to be strong, for me, doesn’t mean he isn’t broken. How can I help put the pieces back together when cancer will always be part of our lives?

But I can’t possibly expect him to get used to the idea of losing me forever. It’s irrational of me.  I know because I’ve gotten a taste of his fears, from a caregiver’s perspective. Recently, he has been experiencing health problems. I’ve been worried for him and when I imagine the worst (you can’t blame me), I get really anxious. I can’t imagine losing him either. Just the thought of it hurts. A lot. And to think this is how he feels a lot of the times.  Being a caregiver is no easy job, even when it’s done with unconditional love.

I am a realist but maybe I should be more selective of the things I say. Let me give you an example:

My caregiver never misses my Dr.’s appointments. He dresses up for them, too. “You don’t need to dress up! We’re just going to my appt,” I say to him. “It’s a very important appt,” he replies. He says I love you and I am here before I head into that…oncology room. And when I come out, I can see the anxious look on his face, wondering how everything went. “My mammo was clear…for now” I said to him recently. He doesn’t need to be reminded all the time that there’s no cure for BC. Did I really need to say “…for now” when referring to my clear mammogram results? He is aware of my reality. Perhaps I should let him enjoy those few moments of good news. And what the heck, I should enjoy them too. And I really try.

When he received the good news, he took a deep breath and held my hand. It’s amazing what a piece of good news can do to his state of mind. I immediately noticed the difference – I see momentary relief and hope. We both try very hard to hold on to those moments.  However, I think the stress that has accumulated these past years since my diagnosis has caught up with him. And me.

Just like we patients are never done with cancer, the job of a caregiver doesn’t end either, especially when they are emotionally connected with the patient. They suffer with us.

I am not sure what the solution to this survivorship challenge is. All I can say is that I am aware of his unconditional love for me. And that I am so grateful for him. I also know he’s hurting. At times I wish he was not in my cancer mess. He should be in a healthier and happier situation. But he loves me. And I love him. All we can do is continue to hold each other’s hand and hold on to the good news we get and enjoy them for as long as they last.

Posted in Awareness, c World, Coping after cancer, Family, Reflections, Self Awareness, Support | Tagged , , | 21 Comments