It’s not a cold…

When I was diagnosed, I battled with whether or not I would share it with the public. And I did; I did because I was tired of telling people one by one that I was diagnosed with this thing. The day that I posted that status, my notifications were going crazy, phone ringing off the hook, phone constantly vibrating due to text messages; I chose not to answer any calls. There was a reason why I posted it, so I would not have to really verbally talk about it over and over again. That quiet down within a couple weeks. And after my surgery, it started up again where people were coming to visit me, sending me well wishes, etc. That, too, quiet down within a few weeks. I was somewhat relieved because I was not interested in pity parties. I just wanted to go back to the way things were before this all happened.

Going back to work and school was my first step to normal, so I thought…..

Growing up, there were things that I dealt with internally and some that I shared with others for understanding, insight, and to relieve things off of my chest. With the information that I shared, a one or two things would happen and sometimes both; my trust would be betrayed, or I would just get the feeling that I whatever I was sharing was becoming annoying and that the next person was tired of hearing it. I am experiencing the latter with in my cancer journey.

What I’ve learned in my life thus far is that some problems are short lived, some are not so short lived, and others follow you for the rest of your life. I thought that my cancer situation would be one that would be short lived, especially after the surgery. I did not know what to expect. I did not realize why my doctors kept telling me why I needed to find a support group and that my husband and mother were not going to be enough to get me through this. My husband does his best to be there for me but there is so much he can really understand. My mother can try to put herself in my shoes all day, but she will never be able to understand the emotional tug of war that I am experiencing in my mind. Others, they just don’t know how to be there for you no matter how hard they try.

So here I am needing to express myself with barely anyone to speak to. After a while, people expect or hope that this will be all over for you, so you just try to swallow the pain and try to get over it. And I wish I could get over it, but cancer is not a scratch that you put a Band-Aid over, or a cold that you take over the counter medicine for and I had to learn that. I have gotten tired of telling people how I really feel about my life because in my mind, they get tired of having to be an emotional support.

I had to come to terms with the fact that I will never be normal again. Always, on the back of my mind, I will be thinking what of is next. There’s anxiety, fear, anger, sadness, and sadly, PTSD to deal with.  For those who have not suffered from cancer or any condition that is life threatening, they think you just have cancer for a little while, a doctor waves the survivor wand above your head, and all is well. Cancer is more than physical. Its’s mental and emotional. It changes your world in ways that you would never imagine! Sometimes I sit and contemplate, how did I get here? But I am here and no matter how long of a ride this is going to be, the best thing that I have gotten from my experience is the value of life and how precious it is.

A Survivor’s Fear

During one of my many doctors appointments, I asked my nurse, “when are you considered a survivor?” I wasn’t sure if I could call myself that because my cancer is still being treated.

I was informed that one is considered a survivor when they are diagnosed. Interesting concept, I thought. As time passes, I am beginning to see why.

Everyday is a fight. And as long as you’re fighting, you’re surviving. But even with the fight, comes fear. Fear to get another cancer again and again and again.

My oncologist had labs done for genetic testing to find out what caused my cancer. Two weeks after my surgery, my husband and I went for a post-op appointment in her office and I was greeted by one of the nurses in the examination room. I thought she came in to look at my sites and talk about God knows what. By that time, I’d completely forget about the labs that were done and was not expecting my results that they. The nurse came in to tell me that I had a rare genetic mutation called Li-Fraumeni Syndrome that causes cancer; and breast cancer being my first, was just one of them. I stared at her in disbelief, thinking “is there a better way to prepare me for this kind of stuff?!”

She went down the list of the other cancers and blah, blah, blah.

I really thought this was over. I thought my breast cancer would be a bump in the road and all I would have to do at this point was recover from this extremely unpleasant pain in my chest and my inner left arm. Yeah right! Because here I was, still staring at her. My eyes started getting really hot. As much as I tried not to cry, I could help but break down.

My husband began to wipe my tears. I then felt the feeling of shame and embarrassment. I didn’t want this for myself but I definitely did not want this for my husband.

So here comes fear again. Fear of leaving my husband behind. Fear of not being old enough to see my children grow up, or fear of not being able to have children at all.

Although my mind races about these very things, my fear is the reason for my fight; my fight to live a long happy life with my husband; to have children and watch them grow up. And a step further, to grow old and see my grandchildren grow up.

**Message to any fighters reading this post: Please know that there are others who are walking the same path as you. A heavy weight was lifted off of my shoulders when I connected with other women. Many who have not or are not in your shoes may never be able to understand what you are feeling which can cause you to feel alone. Iron sharpens iron. Don’t fight alone. There is power in numbers.

 

My Pain & The Pharmacist

I was prescribed Oxycodone for my pain after the surgery. I was under the impression that I was not going to need the entire bottle of pain meds, but boy, was I wrong because I did not realize that having a double mastectomy and reconstruction was as big as I now know it to be! With the level of pain that I was in, they should have given me a few IV bags of morphine to go home with. Unfortunately, I had an allergic reaction to it in the hospital and went on any itching spree. I digress.

I took the pain medication as prescribed; two pills every 6 hours to keep my aching (an understatement) chest under control. Days went by and the number of pills lessened. I started to worry because I did not want to ask for more. I did not want anyone to be under the impression that I was becoming addicted to narcotics too soon. So I did my best to stretch the pain medication.  A Friday night came around and I realized I only had three pills. I told myself that I probably would be okay without them when they finished. So I took two that night and went to sleep. The next evening, I was in pain and in a panic. I called the on call number to get the doctor to call something in for me. The best that he could were Tylenol 3’s. That did nothing for me!

As soon as Monday came around, my husband drove me to the office to pick up a script for more narcotics. I found myself apologizing and explaining myself; about how I ran out, how many I was taking and when I was taking them. Without hesitation, the gave me the script and said  “let us know when you need more.” An explanation was not needed.

If I can remember correctly, I received about four scripts in total for narcotics. Every time I went back to my pharmacy to get a fill, including the times that I went in for antibiotics and other medications, the techs and the pharmacists started to get cold with me; letting me stand in line when there were no customers, whispering and staring at me from behind the counter while processing my information. I grew really uncomfortable thinking “they probably think I’m addicted or am distributing.” This particular time, I was picking up anti-anxiety medication. At that point, I said I would not let this situation dictate my pride, health, & integrity. After giving me a hard time about the script, I snapped and said, “I am not sure if you are treating me this way because you have seen me about ten times in the past two weeks and are probably getting tired of me, but it’s starting to show! I don’t want to be here but I did not choose to have excruciating pain or anxiety because of a double mastectomy. Hand me my medication!” I did not realize that the line grew behind me and I am not one to make a scene, so I was a bit embarrassed. The pharmacist walked over to apologize and give me some bullshit explanation. I just looked at her and said “Yeah. I’m sorry too.” Grabbed my medication and left.

My best friend suggested that I go to a different pharmacy and I said no. As a cancer patient, who is experiencing pain and other medical issues, I will be sure to pick up my medication there every damn time. It is my reality and I do not need to adjust it for a single person. A pharmacists gets paid six figures to distribute prescribed medication. That’s her job and she will do it each and every time I step in that line. And regardless of whether I had cancer or not, if she ever got suspicious of anything, one of her duties entail verifying the script by reading the prescribing doctor’s name and calling the number instead of treating me like shit.

Friends: We make time for the things that are important to us.

When my husband handed me my phone back after my surgery, I had quite a few text messages in regards to well wishes. Two stood out the most. One person that I considered to be a friend asked me what hospital I was in and said she would try to make an effort to come see me. I responded by saying “okay” knowing she was never going to make the time to show up. At least she wished me well, right?

The other person was a mutual friend of the first person I mentioned above. The day I was diagnosed she was aware and offered to accompany me to doctors appointments if my husband had to work. A week after that offer, I texted her to so we could hang out. No response. Called her a few days later; no response. I heard from her finally when she sent me well wishes on the day of my surgery and I simply replied “Thanks.” No responses all while she and mutual friend mentioned above were out hanging together, posting statuses and pictures on Facebook, living it up.

Fuck Josie, she’s not that important; that was the message I got.

I don’t expect much from people in general. But I expect my close friends to be there for me and lift the load from my mother and husband, if they could, while I was recovering. Strangers became my friends and did what friends were supposed to do.

I had a couple friends that did help me a whole lot. And when I mean a “whole lot,” I mean went out of their way at least once or twice to do something for me. One cooked and cleaned for me about two times. The other took me shopping because I could not really drive and anything else that I needed, I knew they would do for me just to give my spouse a break. My husband’s friends  were there for me big time as well. If no one knew any better, you would have thought they were my close friends. They rushed to our rescue so many times.

It has been 5 weeks since my surgery. I have been home; I only go to school once a week to keep myself busy. Not once did any of my closest friends suggest we go for ice cream, come sit and watch a movie with me or to just come talk and let time pass. Before my husband went back to work three weeks ago, he was my number one friend and although I was very disappointed and sad, his very presence suppressed that.

My best friend goes to school in Philly, but home for her is in the Caribbean. Might I say she is a typical student who struggles financially but has booked a ticket to come spend time with me. She has kept up with me through text messages to make sure I was well and conversed with me as though she were next to me.

I can’t say I did not have no one beside me, but I have learned who those people would be when rough times came. I don’t need friends who only show up on Facebook and say “you got this” but are no where to be found on any given day. God opened my eyes and revealed what money could not buy and that was selfless friends.

 

“Yes they’re fake. The real ones were trying to kill me!”

The decision was made. Surgery date was set; December 29th, 2016 at 1 pm. Bilateral nipple sparing mastectomy and reconstruction.

I week prior to the surgery, I was getting scared. Terrified. “What if I die on the table?” is what I would ask my husband. He reassured me that we would see one another as soon as I woke up from the surgery. I wondered if I could change my mind. Day in and day out, I would stare at my little breasts in the mirror. Yes, they were little, but I was happy and comfortable with them. Days before the surgery, I was waking up in a panic searching for my breast. I spent that morning in bed crying.

Eventually I had to talk myself out of bed and convince myself that everything would be alright. And everything went more than alright.

The day of my surgery, I laid in the room with my husband and three of my sisters. My Surgeon walked in and informed everyone in the room about the procedure. (I have to write a separate blog entry on my doctors) His bedside manner was none like any other. He held my hand and reassured me that day would be the day he would be removing “that thing” (the cancer).

They drugged me up; I remember them wheeling me out of the room, and the last thing I remember was seeing my little sister. Then I woke up with a crap load of people in my room then realized I had new boobs. Bigger boobs.

The Aftershock…

My husband was on duty when I got the news about my cancer. I did not know what to say to him or how to say it. But I called him and just spit it out. “I have cancer.” He immediately told me that he would meet up with me. I called my job and told them I was not coming back to work for the rest of the day. I called my brothers, and asked one of them to promise that he wouldn’t tell my mother. I was terrified about how she would take the news, especially while she was out of the country on vacation with my grandmother. He told me that I would be wrong to hide it from her and the best way to tell her was in person with others around.

After leaving the doctor’s office, the tears stopped after trying to figure out if this was a joke. I could not understand how this was happening. Because I did not physically feel anything, it did not feel real. I was able to sit my father and siblings down and share the news with them, then a few days later with my mom. As time went by and I shared it with more people which became exhausting and more real.

Prior to my first meeting with my oncologist, I thought about my options; whether to keep or remove my breast. Although this was a hard thing to think about, I knew what the best option would be. I don’t have children yet and I’ve always wanted to breastfeed. Was I ready to give that all up? I know a few women who did not breast feed their babies, but for the most part, they has a choice. Removing my breast would give me no choice. No matter how many times someone tried to tell me that I did not need breast to have a child or that I would live to see my child grow up, that did not lessen the pain of knowing that I would miss out on the bonding opportunity I could have had if this thing had not invaded my life. But no matter how much that did hurt, I knew what my choice would be.

Sleepless nights; all I could hear in the quiet of the night was the doctor saying “it’s cancer.” Mixed emotions. Despite the increase in doctor’s visits and test, I did all I could to live life as normal as possible. I mean, life moves on whether you’re happy, sad, or angry. And I chose to move forward with life one day at a time.

The Diagnosis…

November 14, 2016; a Monday morning, I was sitting in the courtroom for a hearing on one of my cases. I felt my phone ring, looked at it and realized the gynecologist’s office was calling me. Knowing that today would be the day I would get my results back, I thought they were calling just to say that everything came back negative and that there was no need to come in. Instead, they called to let me know that they did not receive the results yet and that they were expecting to receive them in the afternoon. They advised me to bring someone with me to my appointment. I was suspicious and despite that, I let them know that I would be coming alone, mainly because I did not have the time to call anyone to go with me.

I thought, “there’s nothing wrong with me,” but I also thought, “why would they call to advise that I bring someone? They’re lying about having those results.” A part of me knew something was not right, but the other part kept saying “It’s nothing.”

I left for my lunch break and used that time to go the doctor’s office for my appointment. I checked in, went into the examination room, changed and waited for the doctor to come in. Shortly, there was a knock. In came that doctor followed by a nurse. He paused for a few seconds and said “Well, I have good news and bad news. The bad news is that you have cancer, but the good news is that we can get rid of it easily.”

No matter how easy it would be to get rid of that thing, that was not what I wanted to hear and I looked at him with eyes burning in tears and said “But I’m only 22!” He looked back at me and explained that he did not understand why this was happening to me. No family history, no recent procedures that could have caused this, nothing!

 

The Lump…

Back in October 2016, I was sitting on my couch watching a show, one that I cannot remember at this moment. I felt a weird sensation in my left breast.  I decided to feel around that breast in order to be sure that my mind was playing tricks on me. You’re talking about a 22-year-old, at the time, who barely experienced breast tenderness. I thought, “well, I mean, there is a first time for everything.” In the years of having a menstrual cycle, the only symptom I had were headaches and they came as warning signs the day before my period would start. After a few more times of the same feeling, I discovered a small distinctive lump that did not go away for some days. I made my husband feel the lump and with every exaggerating bone in his body, jumped at the feeling of it. I decided to call the doctor and set up my annual appointment, which I  was due for anyway.

During the annual appointment, I pointed the lump out to the Nurse Practitioner. She’d explain that at my age, there’s bound to be lumps in and throughout my breast. Though feeling how this lump was different from the rest, I was scheduled for an ultrasound. The ultrasound happened, then there was a need for a mammogram. I became really suspicious. Giving a 22-year-old a mammogram? I knew this was not for nothing. Right after the mammogram, I had a consultation with the doctor about what was seen.

The day of the mammogram, he said that I possibly had Fibroademona; that it was common in women 40 and younger, inherited, and okay to live with. He paused for a while, then proceeded to say, “You have two options: one, you can get this lump removed, or two, you can get a biopsy. If you were my daughter, I’d advise you to get the biopsy.”

I took his indirect advice and had the biopsy on Wednesday, November 9, 2016 and had to wait till Monday to get my results back. I was sure that it was just Fibroadenoma and nothing else. I thought I was sure….. Anything to get me through the weekend.