TOUGH TIDDIES: BREAST CANCER PART III

Really, we were prepared for most of this, and I was doing better than expected with a simple Tylenol-Ibuprofen regimen. Plus, I was thrilled with the work on my chest and was earning compliments from every medical examiner I encountered.

However, my relaxation and processing plans were cut short when I got a call from my surgeon.

The good news was that the margins were good. They wouldn’t have to go back in and get more cancer out. The bad news was that the three sentinel lymph nodes they extracted all had cancer in them. Admittedly, I didn’t think this was a possibility since my biopsy results said the opposite, so I didn’t even know what to do with this information. Why was that such bad news? Did we get it all? Is that why we were doing follow-up radiation?

I thought the storm had passed. But I started to get an eerie feeling like this was just the quiet before the tsunami hit.

November 1, was post-op with my surgeon, followed by an appointment with my oncologist. My husband joined me, but I told my mom to join us for the follow-up appointment.

On my right side, they removed the breast tissue and those sentinel lymph nodes. What no one was expecting was that they all had cancer. Which meant the cancer had started spreading.

Reconstruction, which was my next scheduled surgery, would have to be postponed. Instead, it was recommended that I have surgery to remove the auxiliary lymph nodes (remember the lymph nodes as a pyramid and the top three were “sentinel?” The lymph nodes below that are “auxiliary”) to determine how far the cancer had spread. During the surgery, they would also place a port so I could start chemotherapy, followed by full radiation treatment, and I would need lymphatic therapy.

I tried to joke. I tried to muster the strength I prided myself upon. But there were tears in everyone’s eyes. For the first time, I came to the realization that I could actually die from cancer.

Just like after my first biopsy, it took everything I had to pull it together and go back out to the waiting room for my next appointment. They really should have a separate exit or room or something for us barely-holding-it-togetherers.

By Marissa Collins

Heading into Halloween of 2019, I felt like the strongest most fearless 31-year-old. I thought the worst of my breast cancer fight was over with my bilateral mastectomy.

We were entering my favorite time of year celebrating, and I was ready to lay back for a couple of weeks and recover from the ride. The past year was filled with stress and life changes, and I was ready to disappear for a couple of weeks to heal, relax, and process everything that had just happened.

Meanwhile, in some lab in some other state, the cancerous mass that was removed from my breast along with a handful of my lymph nodes were being tested to further diagnose my cancer.

THE TSUNAMI QUIET

I woke up from my bilateral mastectomy wearing a pink, flowery tube top with tubes sticking out of the end of my scars. I moved slowly and hunched over. My biggest challenges centered around my limited range of motion and weight-carrying capacity - and I hated the uncomfortable drain tubes most of all.

Sidebar: Drain tubes help drain excess fluids into a plastic bulb that would otherwise build up inside the space where the breast tissue was removed and cause infections and complications. These tubes were literally inside my chest cavity, coming out of a small hole in the side of my chest, draining fluids into a bulb in my pocket. And to ensure they continue to drain properly, the tubes had to be “milked.” Like a cow utter. Then the bulb had to be drained and measured to establish my volume of discharge over time. Yeah, it’s pretty much as sexy as it sounds.

We figured the post-op would be routine. And it was! It was totally routine getting my tubes pulled out of me like I was a lawn mower being started. I guess I never thought through how the tubes came out. Like a sucker punch to the gut, my surgeon quickly ripped the tubes out of my body in an instant of shocking pain as the suction tubes snaked their way along my insides to escape through a tiny hole.

Holy shit is all I can say. Pretty sure it was all I said as I tried to learn how to breathe again.

Once the shock subsided and I caught my breath, we were ready to discuss my lab results.

First, my left breast and sentinel lymph node. Recall that after a potential problem area was detected here, I opted for a bilateral mastectomy. The results showed there was no cancer on the left side. Which was great news! However, I did have what the medical community has dubbed “busy breasts.” In the most basic explanationmy busy breasts were prone to developing breast cancer.

Yup, you heard it here: my right breast was so bored it decided to take up murder. Let this be a lesson for all of us. Keep your busy breasts busy!

We had a lot of laughs with my surgeon. But what came next was serious.

I was joined by my husband, but I couldn’t look him in the eyes. I sat in the waiting room chair looking forward, just focusing on breathing.

Unfortunately, my poor mother was none the wiser to the news we just received. She showed up promptly for the next appointment to two newlyweds desperately trying not to break down in public. Her initial inquiries into what happened were wellintentioned, but I imagine they turned to panic when our answers were vague and whispered. I told her she would find out shortly. I was afraid if I stopped focusing on my breathing, I would start crying in front of all the strangers in the waiting room. I was mad at her terrified insistence. Time moved forward at a deafening pace.

Eventually, the three of us were called back and stuffed into a small exam room with my oncologist. He reiterated my surgeon’s news along with a laundry list of details on what to expect moving forward. We needed a full body scan to see how far the cancer had spread. I could do a PET scan, but the wait time was long, so we opted for a bone scan and a CT scan. Then I would have surgery to get my auxiliary lymph nodes removed while getting my port installed.

I would then get an aggressive chemo cocktail. I would likely experience nausea, diarrhea, and/or constipation - but they had plenty of drugs to treat those. I would lose my hair, it would likely cause permanent damage to my ovaries, and the wear on my body and general fatigue would be so bad I probably couldn’t work.

However, they were most worried about destroying my white blood cell count. They don’t give this cocktail to certain people, because weakening the immune system would likely put me in the emergency room. But I was young, so it was less likely that a common illness was going to outright kill me - as long as I went to the hospital at the first sign of a fever.

Thirty minutes ago, I was coming to terms with my mortality. Now, I was facing the facts. If I wanted to live, I didn’t just have to give up my boobs. I also had to say goodbye to my beautiful long hair, my new job that had also become a necessary support system, the new family my husband and I had just planned on starting, and any dignity I had left.

We left the hospital in shattered silence.

In the parking lot, my mother broke the silence, desperately reaching out by asking if we could talk more about all of this, as we often did after appointments.

But I didn’t want to talk. I wanted to hide from the world and free all the pain and fear I was holding onto so tightly. I wanted to push her away from it all. So, I was mean. I wasn’t violent and I didn’t slew hateful words, but I wasn’t kind.

I think everyone shows a “mean” side during times of trauma. I’ve seen people plagued with nothing but anger. I don’t know how they do it though. My mean moments hang over my memories like a dark cloud. Unfortunately, my parents saw the meanest sides of me. In hindsight, I think that’s because it’s easy to be mean to people you know will continue to love you no matter what. And if they decide to turn their back on you for it, then they are the inconsiderate jerks - right?

No, of course not!

I don’t regret asking for space when I needed it. While it’s not my responsibility, as the patient, to take care of everyone else, that doesn’t excuse me from having kindness and compassion.

Honestly, I don’t recall what I said, but I accomplished what I set out to do and left my mother alone and broken in that parking lot. Instead of hugging her and kindly asking for some time. I was cruel to the woman who took off time from work to wait on me and go to all my appointments. I was cruel to the woman who slowly watched her own mother die of cancer, just to be faced with it again in her only daughter 9 months later.

I had my husband there to take care of me. With my father at work, who was tak- ing care of my mother?

It wasn’t until much later that I even thought about the third person in that room. Four months prior, my husband was vowing to be with me through sickness and in health until death. We weren’t supposed to be facing the reality of those words so quickly. I don’t think I ever asked him how he was doing at that moment. All I could think about was me.

That’s the thing about the caregivers in this situation. They are in just as much pain and can easily become the punching bags of all the trauma. Yet they are the easiest to take for granted. Where are their meal plans and support groups? Who is asking them how they are doing?

After what I did to my mother in that parking lot, my fear and sadness compounded with regret. I just wanted to scream. So, my husband drove me to the top of a mountain and that’s exactly what I did.

Turns out, I didn’t feel any better after screaming. I wasn’t full of anger; I was full of pain. I looked out at the view and realized how beautiful life was and wondered how long I had to see it all.

The next week, I was getting a CT and bone scan. My veins were tired of all the blood draws and scans, and after a painful CT injection, I resigned to crying in front of tech strangers.

I felt myself slowly falling apart while trying to keep a strong face to the outside world.

Continually providing answers, guiding conversations, and navigating real and bullshit advice WHILE going through diagnosis and treatment was exhausting. I don’t blame people for preferring to focus on the diagnosis and treatment while avoiding the interactions altogether, the deeper I went into treatment, the more I wanted to shut it all out.

Far too often I had to defend the fact that I was most certainly going to lose my hair. No, not all chemotherapies make people lose their hair, but mine did. Yes, it’s just hair - but it’s my hair. No, it does not grow back for 1% of patients. No, I was not interested in sitting in a cold cap for hours, I was prepared to lose it.

I didn’t even try talking about the fact that I was unlikely to have children of my own one day, because I quickly learned the feedback was crueler than the loss. No, I chose not to save my eggs. Yes, there is a myriad of reasons that have been carefully thought through and discussed with my husband that led to that conclusion. Yes, it causes me great distress to talk about. No, I don’t regret the decision we made.

After talking with my employer, we de- cided I could try to continue working parttime. It was the one place I could escape from cancer and just be myself. Yes, I was making my treatment a priority. No, I did not just want to just rest all the damn time.

The thing is, for two months I had been making lifesaving decisions for myself. I didn’t need a bunch of opinions on them or lessons on hope. I just needed someone to recognize my losses for what they were. On the other hand, I wasn’t a fragile cancer patient. I was still living my life, and I needed to feel like I was living it - not dying in it.

I once announced my diagnosis to a room of colleagues. After the room went silent for a moment, one person simply responded, “well that fucking sucks.” It was the best response I ever heard. It did fucking suck. And for a moment, I didn’t have to explain or defend anything. It was what it was.

Shortly after my scans, I got a call from my oncologist. Insert tired joke about calling with bad news here.

I had a small nodule in my lung that was probably nothing, but we would re-evaluate it again in a year. The real concern was that the bone scan revealed something on my shin bone. Now, it could and should be nothing - my left shin is so far from my breast cancer that it wouldn’t make sense - but there were no previous records to explain what it could be. My cancer was a series of rubber duckies and hungry caterpillars, so who is to say it wasn’t plausible that Christopher Columbus trekked the Marissa to plant his fucking flag on my shin? We were no longer shoulding ourselves - I was scheduled for a bone biopsy within a week.

Um, is that going to hurt?

…is not what I asked Google. I was learning that there was some shit I just did not need to add to my stress plate. Especially because I was already stressing about what this test meant.

We were trying to get this biopsy done before I was scheduled for surgery. When I asked what would happen if we found out there was cancer in my bone, I was simply told the surgery wouldn’t matter and we would be having a different conversation. My oncologist was not one to avoid questions, so I started to get that eerie tsunami feeling again…

The biopsy was an outpatient procedure. It wasn’t the most pleasant start. It was difficult to hook up the IV and the doctor was running very late. When he finally made it by, he spoke to me like a child and requested a blood draw pregnancy test. It felt like a punishment when getting a vein was already so painful. To add insult to injury, the blood draw technician clearly thought my other blood draw/injection sites were recreational and brushed a nerve in the blood drawing process.

Otherwise, the rest of the process went smoothly. I was drugged but conscious. I was set up on the CT table and surrounded by nurses that reminded me of angels. They guided me through the procedure, and when the doctor pulled out a giant drill and started the biopsy, I promptly blacked out. The next day, I limped back into work with minimal pain.

A lot can happen when waiting for test results. I was working overtime to distract myself from getting bad news again. More so because I was processing my last conversation with my oncologist. Although I didn’t want to admit it, I knew that cancer in my bones would put my diagnosis at Stage 4, metastatic breast cancer. Nowadays, women can live years with this kind of cancer. But there is no cure.

After four long days, I got the call. For the first time in two months, I was getting a good news call! I could feel my oncologist’s excitement over the phone. Perhaps he needed this win as badly as I did.

Driving home, I realized the gift I had been given. I was feeling like the world was caving in on me, but I had a chance for a cure. There are so many people out there that do not. Why am I the lucky one?

The Monday before Thanksgiving, I went in for surgery to remove my auxiliary lymph nodes and place a port. I was gifted with another drainage tube that was promptly ripped out after Thanksgiving, but surprisingly it took the port placement the longest time to heal. Chemotherapy was scheduled for just before Christmas. I took the weeks I had to study and prep. Unlike my mastectomy, the information was not as universal. So many cancer survivors were providing me with unsolicited advice that freaked me out, so I decided not to research what others had done or experienced unless it was answering a specific question. Instead, I stuck with the facts and wrote myself a glossary of side effects and possible ways to address them. I saw my dentist, my parents cleaned and sanitized our home, my mom found us a house cleaner for pre- and post-infusions, I started a journal and a list of questions, we updated the meal train, my coworkers and I had an open and honest conversation about possible side effects, and I lined-up a friend or family member to join me at each infusion to give my husband a break.

When infusion day finally rolled around, I felt as ready as could be. Infusions always started with blood draws - which were easy now with my port - followed by a visit with my oncologist. He always patiently listened and answered all my questions. I asked for a nutritionist consult, and he lined up one to come during my infusions. All I had to do was ask!

The last question on my list was regarding my fatty liver, a diagnosis from several years prior. It was mostly harmless, but I wanted to confirm if there were any complications or side effects, I might be aware of with it, and he assured me it would not be a problem as long as my bilirubin levels were normal.

Que the lab results with abnormal bilirubin levels.

In lieu of chemotherapy, I was immediately scheduled for an MRI to confirm there were no complications with my fatty liver to undergo chemotherapy. This also gave us time to schedule a heart scan. Unlike my shin, I would have a baseline of my heart, since I was undergoing a treatment that greatly increased my long-term risk of heart disease.

I was becoming desensitized to all the tests, hospital visits, and a growing list of side effects. It would often catch me off guard when, occasionally, a nurse or technician would ask me how I found my cancer at such a young age. It reminded me that we are all scared of this disease and looking for answers.

My first chemotherapy infusion had been rescheduled to a week later. It seems morbid, but there was nothing I wanted more than to get my chemo on December 20. Waiting for this thing I dreaded so much felt worse than actually having it. I wanted to rip out the proverbial drainage tube and get it over with. And that’s exactly what happened.

Every infusion was consistent. It started with a blood draw, followed by waiting, followed by an appointment with my oncologist to review the lab results and answer questions. Then we went back into the waiting area before being ushered into an infusion room chair.

The infusion room is an open space with lots of chairs and a handful of private rooms, but it’s quiet and none of the patients really talk to each other. Not everyone is in there for chemotherapy, but the overall mood is somber. The nurses were always a ray of sunlight. I was usually surrounded by older folks, but not always.

My infusion lasted several hours. It started with different drugs to help offset the side effects, which gave me a slight boost of energy. Then we waited for the actual cocktail to come out from the room in the back where they were made (that sounds sketchier than it actually is…).

The first drug was bright red. It is what cancer patients call the “red devil.” It was manually administered through two syringes by a nurse that was practically dressed in a bubble. This stuff was going into my body!

By the time we moved on to the second drug, my energy boost was gone, and I was exhausted. The second and third drugs came in drip bags and tended to make me warm and they would dry out my sinuses. I would often suck on a popsicle during the drugs that were likely to develop side effects in the mouth, but by the last infusion, I couldn’t even think about a popsicle without wanting to puke.

I documented the first infusion diligently - right down to my red devil tainted pee. It was the most important infusion. Everyone was monitoring me to determine if I would spontaneously combust. But it all went smoothly, and at the end of it all, I was just exhausted and ready for a nap.

Although the side effects of chemo are all over the place, the only consistency I heard was that each infusion would likely cause the same side effects each time. As the treatment went on, it was also expected that those side effects would compound and get worse.

I always planned to be useless for the first week of chemo. The first couple of days were the hardest as I was both exhausted and wide awake on steroids and peeing all the damn time. Once my immune system was back to healthy levels, though, I was practically back to normal - until I had to do it all again.

Following every infusion, I was a walking Mr. Yuk sticker, expelling poisons everywhere. I was on a strict fluid regimen to ensure I was peeing out the toxins regularly, and I slept on a mattress covered in a plastic sheet to protect the mattress from my sweat toxins. I had to use a different bathroom than my husband, which was professionally cleaned a few days after each infusion, and I had to sleep in a different room from my husband until my immune system was back to normal levels. Basically, I was quarantining before it was cool.

I think the first infusion is the worst. It’s like a roulette game of chemo side effects, and we’re all just waiting to see what we get.

Thanks to the movies, everyone thinks nausea and vomiting are the worst of it. But I was pumped with so many anti-nausea drugs that I was more worried about constipation (which can also cause nausea, fun fact).

On the first infusion night, in a poisoned stupor, I accidentally took a steroid pill that I was supposed to take the next day, instead of the anti-nausea drug I intended to take. Although the on-call oncologist reassured us that it was okay, my steroidal panic just inflamed the nausea, and I ended up spending the rest of the night sitting on the bathroom floor expecting the worst. That is until my ass hurt too much and the nausea shifted to just feeling like my intestines hated me. Once I labeled my drugs better and got into a routine of anti-nausea drugs, ginger ale, and some form of regular sustenance, I was able to manage my nausea levels.

However, I consistently struggled with my vision. The best way I can describe it is like being in a dark cave for years and just coming out to the light. After the first infusion, it lasted far longer than I could cope with, and I thought this could very well be the side effect that broke me. But it gradually went away, and I learned how to live with the overstimulated vision for about two days after every infusion. Because that’s what I got good at doing: learning to cope or suffering silently.

I quickly learned that asking my oncologist about any and all of my side effects was the best route to overcoming them. Some things I just had to live with, but others were so manageable it was embarrassing how long I suffered through them.

I started losing my hair a short time after my first treatment. I decided to shave it off when my hair follicles started to literally hurt like a ponytail that had been left in too long. I tried a wig, but it was hot and itchy. Honestly, the wig was just so similar to my real hair that it was painful to look at myself while wearing it. Eventually, I got comfortable with hats and scarves and just went bald.

I did not, however, get comfortable with my weight gain. That’s right, it’s not uncommon for women to gain weight during chemotherapy treatment, due to the steroids. And entering menopause did not help anything.

On Christmas eve, I celebrated healthy bowel movements. For some reason, my husband was less enthused. I’m sure he’s even more thrilled to read it again here.

Since my first infusion, I was going back to the hospital daily for an injection that boosted my white blood cell count. I was told this shot came in a single-shot format, but I could not understand why my insurance would not allow me to get it.

Every day I was growing frailer. I almost passed out after one of my injections, and I barely had the energy to sit down for Christmas dinner with our family.

The day after Christmas, I had chills, body aches, a sore in my throat, and a temperature over 101*. The fever instructions were clear, so we quickly proceeded to the nearest Emergency Room where I was quarantined and tested for everything they could think of, including the flu - which is much like the Covid test, but I think they legitimately swab your brain.

Unable to determine the source of the fever, they sent me home with antibiotics.

The next evening, I was so hot I had to sit outside in the cold December night. I knew I had to go back to the Emergency Room. But I didn’t wunna. My husband called the on-call oncologist who confirmed that I needed to go and would be admitted overnight. I cried like a toddler on the floor of our living room. I didn’t want to go back. I was sick, I was tired, and I didn’t want to be poked or tested any longer. I wanted a normal holiday. I was done with chemo and being sick.

It was a losing battle, and I knew it. The second time around, I was comforted by the fact that I knew the nurse - but not that we had to run culture tests again. When he accidentally caught his watch on the needle drawing blood from my arm and ripped it out, I just laughed. Like a crazy person. This is my life now.

I was admitted to the hospital until my fever broke for a consistent 24 hours. Still unable to identify the source, I was put on a steady stream of every antibiotic they had. I could barely sleep between my IV malfunctioning or running out, constant check-ins, and the sore in my throat. Eventually, I would get Benadryl for the fullbody itching, and I would manage to get some sleep. To add insult to injury, Aunt Flow decided to visit, at which point they gave me a pad that could have doubled as a life raft for a small family.

One saving grace was that my husband was able to stay with me. He brought me food and stayed every night until I insisted he go home and get some real sleep. I was going stir-crazy laying around sleep-deprived, just waiting and begging for a fever not to come and ready to pick a fight with anyone that thought otherwise.

By the third day, I was released from the hospital. I vowed to do more research on taking care of my immunocompromised system, and the insurance company started letting me get the single shot to boost my immune system after every infusion.

Everyone’s cancer journey is different because every cancer, treatment, body, and circumstance is different. If you or someone you love is going through cancer, please do not take this as a roadmap to the cancer journey. If you have questions, talk to a doctor for medical advice. C