During radiation, the therapists ask if you want to listen to any specific music. The first few times I couldn’t concentrate on anything other than getting through radiation but then, I decided I wanted to choose the music.
When they asked what I wanted to listen to, I said “dance music.” They asked if there was a specific artist and pretty quickly I responded Pitbull. I’m not exactly sure why but I guess I connect him with good vibes, Miami, summertime, dancing, all things I love.
So, every day I would ask them to play Pitbull. It made the room a little less dark and scary. Pitbull is happy and the only negative was having to keep my feet still from dancing to the beat as you have to be stiff and stay still for radiation.
One day they told me that they next 4 or 5 patients left Pitbull playing for their sessions.
Another time the therapist said, “not everyone would pick Pitbull to listen to. You must be a good time.” I thought to myself, I used to be… (Mental note – get back to that version of Ali.)
So, I left my mark on the radiation room listening to Pitbull and making radiation into a party… sort of.
Thank you Pitbull for making something scary and unbearable to manageable. <3
9 Jun, 2022
9 Jun, 2022
Blog
Another obstacle because of this damn seroma.
Tuesday I finished my radiation treatment. I completed 20 sessions. TWENTY! I freaking did it.
After I finished my last treatment, I went to put my cream on, tell my booby “good job booby,”(I’m serious, she’s taken a beating and I like to show appreciation – I am thankful for my body) and I got dressed, you guessed it, leggings and a black t-shirt. Then I got to ring the bell. They have a bell outside the treatment room and I never even noticed it. Talk about tunnel vision. I heard it a few times during a check up with my doc but never saw it until now.
Under the bell is plaque that you read when you complete treatment. I don’t know what it says, I was kind of on adrenaline knowing I finished treatment but my ride or die Fazzy was with me and took a video.
We spent the day celebrating. Like old people, lol. We went to the diner and had a delicious breakfast. I had berry stuffed French toast AND a scrambled egg and he had an omelette. I was celebrating (and of course second guessing my sugary choices because hello, cancer, but life is short so…).
Fazal got me super cute edible arrangements with different smiley emojis and beautiful flowers. My honey. 🙂
We then went to Bed Bath and Beyond. We bought beach chairs (even though I can’t bask in the sun like I used to), and some goodies for our home.
We hung out and went out to a nice dinner. We both agreed on how happy we were that this process was done and we could move forward; I was ok.
And then….
I woke up at 4am soaked. Was I sweating? No, the other armpit was dry…
My freaking incision burst. WTaF?!
The seroma I’ve had this whole time exploded. EXPLICIT WARNING.
All over my breast and black t-shirt was a milky white liquid. My incision that was spread so thin from my radiation and seroma opened and all the fluid came out. UGHHHH.
We called the on-call doctor at 4am and he was… useless. He told me to put a warm compress on the area (WHAT?! On my radiation? No, thanks) and to go back to sleep. Lol, it’s comical really. He said that when the Uniondale location opens, I could go get checked out…
Well, at 7:45am we went to MSK and saw my nurse. She said that I needed to go to the MSK UCC (Urgent Care Center i.e. HOSPITAL) to get looked at by a surgeon. Great.
We drove to the city and upon arrival, I realized this was the location where I first found out my Mom had cancer. I think I went into a minor panic attack – trauma is no joke. The nurse did my vitals and asked if I usually had a high heart rate and I said no, it’s usually low. Because it was high, they made me do an EKG which then made me more nervous – is my sweet heart ok?! Ugh.
EKG was fine.
Then I waited to be seen by the surgeon. He said when the body can’t hold the fluid/it’s being pushed out, it usually comes out of a small circular hole, the way mine did. He said they were going to do blood work to check for infection.
I can’t watch someone draw my blood so I stared at Fazal and held his hand. The room was so quiet I could hear my blood filling up the vial. Ew. I said we need some music in here or something and they joked and said I had a good flow. Thanks.
My blood work came back good – no infections thank God. Now I had to wait to do an ultrasound to check if the seroma was still bad.
I did the ultrasound (which is always nerve wracking because that’s what found my cancer). She said the seroma was much smaller than what it was (and that what came out probably made it a lot smaller).
TBH I was happy that shit was out of my body instead of it having to reabsorb but damn.
Then we had to wait for the radiologist to review the films and come back with an update.
I waited and waited and watched The London Ladies? Lol, it was some show on Bravo and I am probably butchering the name. I also watched Housewives of Dubai. Fazal and I have been to Dubai 2x and it was cool but not really somewhere I would want to live, I don’t think.
By this time it was 3pm. We got to the UCC is 11am… I did not expect to spend my first day post radiation at a hospital but here we were.
So, finally, the nurse came in and said that they’re going to give me a 5 day antibiotic as a precaution. My blood didn’t show an infection but this is what they thought would be best. This was a great outcome considering one was reopening my incision and putting something inside to help with the seroma (no thanks!).
The girl in the room across the way had to stay over night, I heard the nurse tell her, which I felt bad. At least I could go home to my own bed.
They discharged me and Fazal and I drove him in 2 hours of traffic and then my sister met us for dinner.
What a day.
Onward and upward (please).
<3 Ali
9 Jun, 2022
31 May, 2022
Blog
My Mom… sweet Anne Marie.
There aren’t enough words. If you were privileged to know her, I don’t even have to explain.
She was the best. Truly. One in a hundred million. My Mom was loving, beautiful, sweet and funny. She was carefree and positive, always, even though her life had its challenges. She loved everyone and I was the lucky one to call her “Mom.”
She was my best, best friend.
But, cancer took my Mom and it took her way too soon. My Mom was diagnosed with stage IV colon cancer when she was 59. She had chemo for 3 years and when it stopped working, she was offered to try a clinical trial. Unfortunately, it didn’t work and we watched cancer take over her body. She went way too soon and I don’t know if I will ever understand why. But, I don’t want to talk about that now.
I want to share the beautiful connection I still have with my Momma and how she’s continued to protect me during this journey.
The day I went to get the biopsy done, the light was flickering in the operating room and the nurse said I had a “friendly ghost” with me. My sister replied to us and Fazal, “it must be Mommy.”
After the biopsy, I had to go back to Zwanger to do the follow up mammogram (to ensure the clip was placed properly) and while I was waiting in the waiting room, the light next to me was flickering. Ok, this one is odd I thought. “Hi Mom!” I also thought.
And then, when I went to MSK for my initial visit, to meet my surgeon and discuss the plan, the light outside the room was flickering!!! No other lights were flickering. It wasn’t like the ghetto biopsy location where I could say maybe it was their electric. This was pretty pure coincidence.
Meanwhile I’ve been asking for a sign from my Mom since she passed in 2016. But people often say, we get what we need when we need it, or something like that. I’ll take it. I felt my Mom saying, it’s going to be ok. You’re going to be ok.
So then, my lumpectomy (surgery) was scheduled… on my Mom’s birthday. Of all days. It was set for March 2nd. The “funny” part was, I didn’t know if I was going to do a lumpectomy or a double mastectomy. My surgeon said, let’s put the lumpectomy on the calendar and you can change it if you decide to go the other route. When the tentative hold was on my Mom’s birthday, I felt comforted that that was the right choice for me.
This was my Mom saying, I got you.
When I had to do the radiation simulation I was so nervous. I was shaking. These processes are terrifying and your brain goes to such extremes of the unknown. And then suddenly, I had a calmness come over me. It was my Mom. She was with me. I can do this, I thought.
She once said to me, “I’ll always be near” and I believe it.
I’ve often thought about my Mom being with me during radiation too. While I listen to Pitbull (a story for another day) and imagine her there with me.
When I met with a holistic doctor through MSK, she said, “maybe you met with me so I could give you a message from your Mom that you’re not alone.” That is exactly what I needed to hear and often tell myself.
Since I lost both of my biological parents, I often feel lonely. So many of my loved ones, my family, are in Heaven. I deemed them my AoA or Army of Angels to help me get through this journey. So, to hear from a complete stranger I am in fact not alone, it was a welcome projection.
A good friend of mine said to me, “I didn’t meet your Mom, but everything you’ve told me about your relationship leads me to believe that she would move Heaven and Earth to come to you in a moment of need.”
I can’t express how much I treasure this comment. She’s right. My Mom and I had, have, something so special. It’s hard to explain but she was for sure my soul mate. Not in a weird way but in a, we just understood each other, kind of way.
I still miss her so much. SOOOOOO much. But I am grateful to have had such a wonderful Mother for 28 years of my life. I would do anything to have her back but I trust that she’s protecting me (and all of us) from another plane.
I can feel her in the sunshine. Really. I know it sounds crazy but I do.
I love you Mommy, trillions and trillions and trillions.
Thank you for protecting me. Thank you for helping me and I hope you are so so happy up there.
31 May, 2022
30 May, 2022
Blog
Armpit Hair… Don’t… Care…
Well, I mostly don’t care.
When you’re doing radiation, you can’t shave your armpits.
Radiation is 4-5 weeks long plus recovery.
Let me repeat that. Over a month of not shaving your armpits. As a woman, this is a long ass time.
Have you ever gone one week without shaving your armpits? I don’t think I ever went more than a day or two. This isn’t like shaving your legs, armpits are 1-2-3 why would you skip it?
Mind you, it’s May. In New York. New Yorkers wait ALL YEAR for the summer.
We wait and worship the sunshine, warm air, SHORT SLEEVE / NO SLEEVE shirts, dresses, ya know, the usual. But now, if I raise my arm too high, they’ll see my 1/2 inch armpit hair entering week 4, ie I still have another 1-2 weeks to go. Who are “they?” No clue. And now, I don’t even care. Really. I dare someone to say something to me. That will be a conversation they regret for the rest of their life. Hah! Lucky naive a-holes.
They won’t see though. Since I have to use my Tri… (no clue the actual name) gel/moisturizer 2x a day, I wear t-shirts that will be thrown out post radiation. Why? The gel stains every shirt. I ordered mens XL black and red t-shirts off of Amazon knowing this ahead of time thanks to my radiation nurse. I wear these every day. Every. Day. Black leggings and an oversized ugly ass t-shirt even on the weekends because yes, you have to use the gel every. day. So, the sleeves are too long to see my hairy pits. #smallwins
I should have got black and yellow shirts so I could sing that song, “black and yellow, black and yellow.” Though yellow feels overly happy and obnoxious given the circumstances, lol.
All things considered, it could be much worse. But these are the things you go through during rad. Things the average person never has to even consider.
At least radiation is post surgery and during the cancer-free stage. Amen to that.
This is basically comical to me because in the grand scheme of the cancer experience, this is a ridiculous call out. Hence admitting I mostly don’t care about this minor inconvenience.
Keeping things positive here,
Ali Rose xoxo
30 May, 2022
26 May, 2022
Blog
Radiation and I are almost friends at this point. Today was session number 13. 7 to go.
My doctor said the first week of radiation should be “a breeze.” Since radiation builds up over time, the side effects accumulate with each session leaving you with the most impact towards the end of treatment – week 3 or 4. “You may feel tired, you may get a bad sun burn, maybe dermatitis.” These are the expected side effects.
Well, not this girl.
Day FOUR I was crying that I was in pain as I got up on the table, in my green hospital gown, telling the girls (radiation therapists) that I couldn’t lift my arm all the way. They said a pulling feeling was normal.
Per usual, knowing my body, I called my nurse that afternoon and she said to come in.
They said I had a seroma – fluid build up in the cavity where my surgery was. While it’s normal for the body to fill the area, it’s also supposed to absorb it back. When your body needs help, you can have an aspiration which means, having a doctor use a needle to suck out the fluid.
In the moment, on Thursday, day 4 of 20 radiation sessions, I was freaking the fuck out. You said this would be an easy week, I can’t lift my arm straight up and now I have to possibly have another procedure? Tomorrow?
They said that they could then test the fluid to see if there was an infection. Whyyyyy is this happening? We knew I had a seroma there prior to starting radiation and at that time they said that it was risky to aspirate a seroma because any time you introduce a needle into your skin, you risk infection. So… what are we doing?
They gave me an antibiotic, just in case, scheduled the aspiration for the next day and that was that. I was legit shaking on the table – on the table because they had to do an ultrasound to see what was going on.
Another procedure.
“You should feel instant relief when they aspirate you.” I didn’t. I still felt pain in the same area but had a little bit more ROM (range of motion – I saw this abbreviation in one of my medical record notes, lol).
Now, I wasn’t only taking my beloved Tamoxifen every night, I had to take 2 antibiotics in the AM, Ibuprofen throughout the day, and 2 more antibiotics in the PM. So. Much. Medicine.
Friday I went in for the procedure. Dr. Kelly was the doctor. She said this was an “easy” procedure and not to worry. She said, “I don’t know if anyone explicitly said this to you but, this isn’t cancer. Just in case you were worried about that.” Well, being in this situation I am always worried about that so, thank you, that was good to hear.
I couldn’t look – I watched the room’s desktop screensaver switch from elks to flowers to landscapes while she stuck FOUR needles in me to remove 42 cc of fluid. She showed me after – it was yellow, like pee yellow. She said it didn’t look like it was infected. TBH I thought that’s nice but let’s wait for the results… This procedure wasn’t too bad. And, at least I was on the antibiotic to help with the needle risk…
However, when we left, we being Fazal and I, my ride or die, I didn’t feel much better.
I was still in pain, in the same place, right where my body was more red showing everyone, alert: this is the problem area. But, I had to just keep the faith and hope I would feel better. Well, I took the antibiotics, day and night, for 10 days. It took another 2 days until I finally felt like it was slowly getting better.
When I did the CT scan yesterday, my 2nd simulation for my radiation boost, my doctor said the seroma was smaller, thank God!
Ugh.
Onward and upward.
26 May, 2022
26 May, 2022
Blog
I’m frustrated that it seems everyone is afraid or hesitant to ask me about radiation.
I, myself, think I should be in my 80’s receiving radiation but no, I’m 34. And, as I am always trying to find the positives… I tell myself my body is much stronger and able to take it than an older body would be.
Every day, Monday through Friday, I start my day with Radiation. I have to do this for almost 5 weeks. My appointment fluctuates between 7:40 to 8:40am daily. Fazal drives me, we say hello to the valet, who knows us now, grab our masks and walk in.
The way my doctor explained radiation was, “you are cancer free” (Amen) so this is basically “sterilizing” the area so the cancer never wants to grow back. (Please, please stay away.)
Of course I asked, if there were any C hiding in me, would this kill it? He said yes but there isn’t any there. My radiation doctor is a gem. I feel very lucky to have him during this process. Since I was diagnosed with Lobular Breast Cancer, what my surgeon described as “the sneaky cancer,” I always worry what if – what if it’s there and we couldn’t see it on the MRI but I have to push those kinds of thoughts out of my head.
The doctor recommended I do 20 sessions of radiation. 16 days of the full breast and a boost for the last 4 days. The boost is directed towards where the tumor was versus the whole breast.
Before you can do rad, you have to do a simulation. Another appointment I was crying at and scared of the unknown.
During sim they lay you on a table, naked from the waist up, with your hands above your head holding this little blue circle thing, for comfort… hah.
Then, you go back and forth through the CT scan to see where your insides are. Since my cancer was on the left, we have to be careful that the radiation doesn’t hit anywhere else, like my heart… more stress. I still wonder, why is it ok for my breast to take the radiation but not the other areas of my body.
Then, when they have everything placed in the right spots, they give you threepermanenttattoos. They’re tiny black dots but they’re forever. The nurse warmed me that they feel like beestings and said said she knew from experience as she actually had 2 on her fingers from patients who “jumped.” Each one hurt more than the last but it was quick. It would have been cooler if they were a little flower or a warrior… something more than a dot.
I told myself my Mom was with me during this appointment and just tried to find a sense of calm. You have to lay so still every time you’re on these tables.
Then, when I had to go for my first radiation appointment, I was nothing short of a nervous wreck. But I’ll share more on that another time.
26 May, 2022
25 May, 2022
Blog
Oof. I don’t know if I’m even ready to write about this. Have I dealt with this yet?
In January of this year, I was having pain in both my breasts, on the left side and near my right armpit. After losing both of my parents at young ages, I worry about everything. So, I called my gyno and made an appointment for a breast exam. He said he didn’t feel anything, no lumps or bumps. But, if getting a mammogram would “put my mind at ease, let’s do it.” He said that since I have fibrocystic breasts, we could make an appointment for a mammogram.
I scheduled a mammogram and an ultrasound. I had never done this before. While there are a lot of health issues that run in my family, breast cancer wasn’t one of them. I didn’t expect to get a mammogram until I was 40. Well, if it will put my mind at ease…
I went for the mammogram and my husband, Fazal, came with me, thank God. I went into it thinking there was no way I was going to have breast cancer. The mammogram wasn’t as bad as I thought it would be. I also don’t know if the girl did it right now that I’ve had multiple mammos.
During the ultrasound, Suzanne, the radiologist, said everything looked good as she explored my right side and that my lymph nodes were clear – whatever those were. As she was scanning, she slowed down on the left side and I knew something was up. Her whole body language changed. She said, “don’t worry, a lot of people have benign masses. I’m going to take some extra pictures and videos.” I instantly thought is there is something there?!
She called the doctor when she finished so I could speak with her (as I was crying and freaking out) and she said that she recommended I do a biopsy to test the mass and make sure it wasn’t cancerous. She said “97%” of the time, these are benign… Ok, good odds.
I was terrified to do the biopsy. The doctor called me in the morning and asked if I could come earlier because a transformer blew up the road and their electricity was partially out. Wait, were they kidding? My husband and I get to the office and there are no lights on in the lobby. Lol, you can’t make this shit up.
I asked the nurse if they were sure it was ok to proceed. Could you imagine a needle-vacuum (my own terminology) getting stuck in my breast when the electric goes out?! She said it was fine. Cool. My sister met us and she and Fazal tried to keep me calm saying I had nothing to worry about.
I went in the changing room and the light was going in and out. Again, maybe we should just reschedule.
Then I entered the operating room, they let Fazal stay with me because I was shaking in terror.
Now, the freaking light above me was going in and out. If a biopsy isn’t scary enough… The nurse, Stephanie, said you have someone watching over you – there’s a good ghost in here. Thanks Stephanie.
Mom? Is that you? I’ve been asking you for a sign for over 5 years and you give me one now??
I “tolerated” the biopsy, ie needle vacuum, “well,” they said. This was on February 2, 2022. 2/2/22 that should be good luck, right? Aren’t 2’s a “good” or “lucky” number?
Fazal and I were planning to hop on a plane to Miami 2 days later – a trip I had been looking forward to for a LONG time.We asked and the doctor who did my biopsy said go. “We’ll have these results to you in about 5 days,” he said.
Two days later, around 3pm, the doctor calls me and, in a positive voice, asks if I received my results yet. I said no, now feeling like ok, this is good. He says, “unfortunately they found breast cancer.”
I froze. What? No, that was the wrong sample.
No, this can’t be.
What the actual fuck?
I’m only 33. This can’t be right.
My body was trembling and Fazal took the phone. The doctor didn’t even say he was sorry or anything. WTF??
Fazal got off the phone, hugged me, and said he was so sorry.
