Hi there beautiful people of the world. Welcome to my first ever blog post. Exciting, yeah? For my first post, I want to share the full unadulterated story on how I was diagnosed with cancer in my 20’s. Thats right- in my f-ing twenties. 24 and 346 days to be exact.
2018 was a truly bad-ass summer. It was the first summer in my twenties that I’d spent single and unattached. I decided it would be a truly epic season. I was working two jobs usually spanning the whole day, then I’d go party, go home and crash for a few hours, work, repeat. I lived out the summer that 21-year old me always wanted but never had. I was tired and worn out… but f-ing ecstatic about life, my friendships, and my future.
So one day I’m at one of my jobs which happens to be a bar. I’m moving fast, minding my own business, working and such when I hear an ink pen fall out of my back pocket. I bend down to pick it up and suddenly felt as though I was kicked by a goddamn mule in the ribs. Like someone or something kicked me so hard in my ribcage that I couldn’t breathe. Maybe I was kicked by an imaginary mule or maybe a ghost? I could be convinced that ghosts are real with the proper evidence and research to back it up. Whatever it was, it was painful as all hell. But I shook it off and chucked it up to gas pains or dehydration. “I’ll just drink a ton of water and lay off the whiskey”, I thought. I still was in pain for the rest of the day and the next- but with even more intensity. It got to the point where I could barley breathe or walk normally without experiencing pain. The aches spread to my stomach and chest. I rested and drank a s-ton of water, so I thought it odd that I wasn’t feeling any better.
Three days after the initial imaginary mule kick, and feeling like I was hit by a truck, I mentioned to my roommates (I have 2- Emily and Bri) that I was still in pain and didn’t know what it could be. We were all laying on Emily’s bed, decided to get stoned to the bone cause that always helps with pain, and laughing hysterically when the pains got even worse. “Thats enough, to the Google”, I said. I started WebMD’ing my symptoms (I know everyone says not to do that- but I did anyway) and actually came up with a pretty narrow list of possibilities.
- Heart Problems: Myocardial Infarction- I quickly figured out that no, I was not having a heart attack and my left arm was not tingly.
- Gastrointestinal Disease
- Cancer- *shocked face emoji*
At the time, I had no idea that everything was about to change. I will say… that evening/into the morning was spent with people I love, and I will always cherish that day as the best start to the beginning of the worst day of my life.
After deciding that pneumonia could be the only possible explanation, we laughed off the rest of the options and decided that I would take myself to urgent care the next day, which happened to be my day off and also September 11th, 2018. See, I had a vacation planned to start on September 12th and took off of work for a whole week.
The morning of September 11th at about 9 am I took myself to the good-ole’ neighborhood CVS Minute Clinic. I was there for no more than 5 minutes before I was told to turn around and go the nearest emergency room. The urgent care nurse explained that I would need an x-ray or ultrasound and that a simple lab test wouldn’t do me any good. I felt a little silly because it made sense to me that urgent care wouldn’t be able to help me.
I sat in my car for about 10 minutes- debating if I wanted to spend the Tuesday before the start of my vacation in an emergency room. I had packing to do, shitty health insurance, and come on- ERs are the worst. I didn’t want to spend all day there just for them to send me home with some tylenol, but I decided it was better safe than sorry and told myself to suck it up.
I called my shitty health insurance, figured out which ER I could go to in-network, and drove myself there. I sat in my car in the parking lot for about 15 minutes. In that 15 minutes I smoked a roach I had leftover from the morning, listened to some Neil Young, smoked a cigarette, finished my coffee, and walked in- prepared for a useless and wasted visit. I remember as I walked up thinking to myself: I’m gonna take a silly snap chat about how ridiculous and annoying it is that I’m at an ER on a Tuesday morning.
I checked in and got to the part where they ask you what brings you here today. Well ma’am I’m having some abdominal and chest pain… I literally didn’t even finish my sentence and before you know it I’m in a goddamned hospital bed with an IV in my hand. They immediately did a ton of tests. EKG, X-Ray, CT, MRI, blood work, urine sample- you name it. Oh! And the barrage of questions.
Basic stuff like: Do you do drugs? Are you high right now? (…do you ever get nervous, are you single? *Lil Wayne voice*) What allergies do you have?
Then to the real head-scratchers: What did you eat last Tuesday? Give us the full medical history of every immediate family member, extended family member… I’m sure I made some shitty joke like, “Oh you may want to know that my fourth cousin twice removed once had a suspicious mole on his back.”
So by this point its been about two hours, and my phone is dying and I’m annoyed and ready for them to pat me on the ass and send me home. I call my roommate Emily (our house happens to be down the street from the ER) to bring me a phone charger because this whole thing turned into much more than I was prepared for when I left the house that morning. Emily comes to my room with a charger and hangs out with me for a bit since she had a few hours before work. Well the hours are ticking by and I’m waiting and waiting and waiting.
The ER doc comes in and explains that I might in fact have Pneumonia, but they are waiting on more test results. Emily says she’s gonna take the day off of work to be with me in the ER. I insist that she shouldn’t do that and its not necessary, after all I’ll be home shortly.
Emily ended up covering her shift for that night so that she could see this whole ER thing through to the end- which I didn’t find out about until later, and was very grateful for. So Emily and I are hanging out in the room and the MD comes in with a nurse. She says, “I’m going to close the door, would you like to talk with your friend here?”
Uhhhh yeah lady, why are you so serious and why are you closing the door? She sits down and the first thing out of her mouth is, “The radiologist called and he almost never calls. He looked over your scans and test results with a team of specialists and they concluded that your results are indicative of Lymphoma or Leukemia”. I promise, that is what she said verbatim, and I’ll never forget it.
I laughed, guys. I literally laughed in this woman’s face. I look over at Emily, and she’s crying. I think to myself- why the hell are you crying this is obviously a mistake. In response to my laughter, the doc says something like its normal to be afraid etc. At this point I don’t feel anything except frustration because obviously my time has been wasted and these people are all bat-shit and they don’t know anything about medicine. Then the doc says that the next step is to send me to an oncologist (for those of you who aren’t familiar with that term, it means the study of cancer, or a cancer doctor)
Yeah, ok, whatever, where are my keys I’ll take it from here and get this mistake cleared up. The doc looks at me like I’m the one who is nutty and says that I will have to be transported via ambulance to a major hospital, where I will be hospitalized until further notice to have a biopsy, more tests, blood work etc… At this point I’m no longer listening. I’m numb. I’m in disbelief. I’m angry. Then it hits me all at once with the force of a thousand fucking waterfalls… I have cancer. I’m sick. What a plot twist.
Emily is calling our other roommate, Bri, to leave work and get here ASAP. Emily is also making plans to have my car taken home by a friend (thank you homie) and have a bag packed for me. I immediately thought of the state of my room. I had been so busy lately and hadn’t spent much time at home. I knew it was absolutely wrecked and I felt a little embarrassed by that. I told my roommates that when packing clothes for me that they may have to do the smell-test. I laughed because I remembered something my papa always used to tell me: Don’t leave the house without clean underwear on… you never know, you might be thankful that you did.
Thinking of that reminds me that I have to tell someone. So I call my papa- the first person that pops into my brain after my head stops spinning. I call my papa, who is my person. He’s my mom and my dad- and he happens to be out of town on a work trip for a couple of weeks. He answers way quicker than I expected, and I find myself struggling for the words immediately. So all I say is,”Pop, I’m at the ER and they’re telling me I have cancer and that I’m being transported to the hospital for admission”.
This is the first time that I said those words out loud… “I have cancer”. And I lost it. I absolutely lost it. I cried and screamed into the phone and said a bunch of gibberish and my dad interrupts me and says: “Hannah, it’s going to be okay. We will get this figured out. It isn’t 100% for sure yet. Don’t panic”. I was shocked to hear him say this, and honestly very angry because I felt as though he were dismissing the seriousness of this. My dad and I are very close and I was thoroughly offended that he said to not panic. How could I not panic?
He said he was going to end his business trip and drive back that day- which would put him in Ohio around 2 am. After hanging up, I realized that he simply chose the words “don’t panic” because what else is there to say in a moment like that? What do you say when you and your only child’s world comes crashing down in an instant? I didn’t consider how it would feel for him at the time, and looking back I feel slightly guilty about being cross with him during that conversation because he was being strong for me, and has continued to be.
So, the ER starts making moves to transport me to a major hospital, which turned out to be University Hospitals main campus. My friends are getting my affairs in order, I canceled my vacation, and prepared myself as best I could for the unknown. By this time its about 4pm, I hadn’t eaten that day, and I’m losing it emotionally. My nurse, who was a very lovely woman about my age was so good about comforting me and hanging out with me when I was alone for a bit while my roommates were out taking care of my affairs. She insisted I eat, but I was so distraught that eating was the last thing on my mind.
This beautiful-souled nurse brings me HER lunch- homemade matzo ball soup. That she made the previous night. If you’re reading this- thank you and I love you girlfriend. I cried into my soup and ate. I cried because I felt so lucky to have people here to support me, I cried cause I was scared, and I cried because I was angry.
I started to perk up and realized how much pain I was in. After-all, they hadn’t given me any pain medication and I’d been there since morning. My nurse gives me morphine. After an unknown period of time later, I realized I was watching hispanic soap operas on the telly, and suddenly I found my current situation very laughable.
By the time my roommates return to my room in the ER, I’m hysterical. Crying, laughing, angry, depressed, anxious, manic. These six emotions soon became my home base. They come over me in a cycle constantly and relentlessly, and are always there. Sometimes all at once- which is a very interesting thing to witness… more on that later.
It’s me, Emily, and Bri in my room. Emily sits on my bed. Bri lays in my bed with me and holds me while I cry. There is something to be said about the people that you choose to be your family. I chose these two girls and they chose me. Our support of one another is unconditional. And if you girls are reading this- please know that I would go to the ends of the earth for you.
The transport team arrives to take me via stretcher to UH. I tucked my phone into the straps that contained me and off we went. When we arrived, they put me in a room, my friends joined me, and we waited. It was pretty quiet that night, with the exception of nurses coming to take vitals.
Around 11 pm, a doctor arrived to tell me the plan for the next day. He explained that a team had been assembled for me (sounds much more bad-ass than it is) and that they would begin tests and schedule a biopsy in the morning.
So my friends went home, and I sat in the bed. I didn’t sleep, I didn’t watch tv, I didn’t think. I just sat in the dark. My dad arrived around 3 am. When he arrived, he sat in the dark with me, and we cried. We didn’t have to talk or explain, we just sobbed. We asked a nurse for a cot and my dad slept in my room by my side. This would be the first of many, many nights spent this way.
At 8 am, I opened my eyes and counted 10 people in white coats hovering over me. Can I just say how truly terrifying that is? Like, we’ve all seen The Haunting of Hill House on Netflix, right? Bent Neck Lady? Its like that except I think I’d much prefer the Bent Neck Lady.
Then more questions. Endless questions.
The swarm of people around my bed explained all the tests and the biopsy that I would need. They scheduled a biopsy for the next day, which would be Thursday, September 13th. I wonder if it was actually done on Friday the thirteenth if the opposite effect would have happened- like only good things instead of bad?
Tons more tests, tons of phone calls, blah blah blah. Then Thursday came- biopsy day. They discovered that the source of the masses shown on the x-rays were all lymph nodes- thats why they thought I may have Lymphoma or Leukemia. Those are blood cancers and can cause a disruption in the lymphatic system. If you’re lost, don’t worry. I’ll be making a post shortly after this one that describes blood cancers in lay-mans terms.
They decided to do a biopsy of a whole lymph node. I was told that the lymph node located in my right inguinal area would be removed. Meaning, they were taking a lymph node from my groin. They explained that the scarring would be minimal but the tissue underneath would never return to normal- and I would have to just deal with it. I made a joke about how I’ll just cover it with a tattoo of a gun pointing to my nether regions. They didn’t think that one was too funny. Forced laughs, hot crowd.
The docs explained that if the biopsy came back positive, that I would have a PET scan to further confirm a cancer diagnosis. I had surgery, recovered, and went home to await my fate. The team that I had in the hospital hooked me up with a doctor that would become my regular oncologist- we shall call her Dr. B.
While I was at home waiting until my appointment, I got a phone call from my health insurance. None of my care or time spent in the hospital would be covered- and my upcoming appointment with Dr. B wouldn’t be covered either. The woman on the other end explained to me quite rudely that if I wanted an oncologist that I would have very few options. I was not able to go to either one of the two best cancer therapy hospitals in the area, or Ohio, and even the US. No… I’d have to go to some shitty private practice out in Elyria and oh! guess what? If I need treatment, they don’t cover chemotherapy.
I am not one to be disrespectful, especially to a stranger over the phone, but I was not very nice to this woman. I feel slightly guilty about it. Not making any excuses, but I was in a very fragile state emotionally and this news was very distressing to me. I decided that I didn’t give a f what my insurance said, I was going to this appointment. I hadn’t even officially been diagnosed yet and I had no idea how I was going to pay for my hospital bills.
I met Dr. B at Seidman Cancer Center with the company of my dad, and a friend called Jill. By this time, my symptoms were almost unmanageable. I was sore from the lymph node biopsy surgery, I was short of breath and could barley speak without struggle, every lymph node in my body was bulging out of my skin, and I was in a tremendous amount of pain. Mind you, this is two weeks from when I first noticed the pain in my side.
My father, and a lot of others close to me, hung onto the possibility that I may not have cancer. There was a small chance that upon further testing it would be discovered that I don’t in fact have cancer, and it was just a terrible virus or something weird and curable.
Dr. B doesn’t beat around the bush. She comes in and immediately tells me that I have stage III Classic Mixed-Cellularity Hodgkin’s Lymphoma (I’ll explain more about what that means in a later post). I was distraught but pretty well prepared for this news. I mainly just wanted to ask a bunch of questions.
The first question I had: Am I going to die? Dr. B explained that my disease can be cured fully with the proper treatment and care. The survival rate for my disease is 86%. I felt better knowing that I most likely won’t die at an early age and that my life wasn’t over. My life as I knew it was over, but knowing I wasn’t going to die tomorrow brought me some solace.
We discussed what life would be like from here on out. I wasn’t permitted to work anymore (wasn’t prepared for that one), I would have blood drawn at least twice a week, I would be on many medications and would have to be strict about it, no drinking, no smoking, no large crowds, my diet would change, (I was and still am pissed that I’m not allowed to have sushi or rare steaks) and that I would most likely feel like shit all the time.
Oh and the shittiest one: I would most likely lose the ability to conceive children… Dr. B gave me some hope though: She would set me up with a fertility doctor and we would attempt to preserve as many of my eggs as possible and freeze them cryogenically for future use. Science-y.
I was happy about the fact that treatment would only last four months, but was reminded of a harsh reality: I cannot work. How will I pay my bills? What about my shitty insurance? My father and I discussed me moving to his home in Erie, Pa. But I love my home, and I’m proud of it. I thought, life is changing so much, I don’t want to add onto that and have to uproot my life even further. I decided that no matter what happened and no matter what changes I had to make, I would find a way to stay in my home and not have to move in the middle of all this.
Dr. B also dropped another bomb on me- she would be admitting me into the hospital that day to begin chemotherapy due to the fact that my cancer was so aggressive and I was extremely symptomatic.
Alas, the other c-word: chemotherapy. I would have 6 cycles of a chemo regimen called ABVD (again, I’ll make another post about chemotherapy). Each cycle would last 2 weeks and consist of 2 outpatient treatments. And we were going to start that night.
My father and I drove to my house in Lakewood, packed my bags and we headed to what would turn out to be my home away from home: the third floor of Seidman Cancer Center. They immediately put a port in my arm called a PICC line. Since I have a blood cancer, they are constantly drawing blood and giving me medications and chemo through an IV. The PICC line is a semi-permenant catheter that is inserted into a vein that carries blood to the heart. Heres a visual:
I didn’t feel shitty from chemo right away. I actually found that my cancer symptoms were improving and I was feeling better. After I was given the clear to go home, I completed two total cycles of chemotherapy as an outpatient. The goal was for me to have 2 cycles and then a PET scan. Ideally, all of my cancer would be gone and I would receive four more cycles to ensure that I was in remission and that it wouldn’t come back.
Then, my birthday arrived. 25 snuck up on me. I can’t say that I was particularly excited about it. I wasn’t happy that I wouldn’t be able to drink and party for my birthday. But I found ways to celebrate. I went to a concert with my best friend Bri.
I had a beautiful dinner with some lovely friends. I received some wonderful gifts. It was a birthday full of mixed emotions and uncertainty, but I made the best of it with a lot of help.
I began fertility treatment, which was not fun let me tell you. We had to move quickly though due to the fact that chemo and the fertility drugs couldn’t be taken at the same time. So we hurried… up to 5 hormone injections a day administered by yours truly, two to three ultrasounds a week, and blood draws two to three times a week.
Everything seemed to be going along just fine. But then I got a call from one of my nurses saying that my body wasn’t responding fast enough to the fertility drugs. Upon consultation with my oncologist, Dr. B, it was decided that we would end fertility preservation because I needed more chemotherapy ASAP. It was a heavy choice, although one I didn’t have to make… guaranteed babies or life? My doctors assured me that it wasn’t a guaranteed thing- just likely. So I hung on to hope that it would be possible for me someday and I pressed on.
For the next two cycles, my dad took me to every single one. Chemo is a bitch from hell so it was nice to have him there with me every time. I completed two cycles and my doctor scheduled the PET scan. (I’ll explain more about what a PET scan is at a later date) I noticed that right around this time, my hair was beginning to fall out. Like by the handfuls. If you know me personally, you know that I have some large-and in-charge hair. Thick and wild. Like this:
Naturally, pulling out wads of hair everyday and waking up with it on my pillow was beginning to distress me. It became thinner and thinner. So one day, I went to the store, bought a set of clippers and decided to buzz it all off.
I texted my roommate and closest friend, Bri and told her I was about to shave my head. She was at work and FaceTime’d me immediately. I propped the phone up on the sink and got to work. I will say it is quite liberating to buzz your own head. With liberation comes lots of emotion, though. I cried as Bri watched, there for me in silence or with a kind word about how cute it was every now and then.
Anyway, PET scan day arrived. I was told that I would receive the results during my next follow-up appointment with Dr. B. One day, I’m in the car on my way to the store, and Dr. B calls me personally. She explained that I still have cancer in my body and that the chemotherapy regimen would need to change dramatically. At this point in treatment, it was abnormal for there to still be disease in my body. I would have to have another biopsy. We were to discuss the next steps and what the new plan was during our appointment.
Before we hung up, she gave me one last bit of good and bad news. The new chemotherapy treatment would for sure leave me barren- unable to ever naturally conceive biological children. Good news: She felt as though I had enough time to have a break from chemo and I would be able to try fertility preservation again.
I began the grueling process of fertility preservation once again. Three times a week, I drove to a fertility clinic in Beachwood, Ohio. During my visits, I would have blood work (they were unable to use my PICC line so they drew peripherally every time) and an ultra-sound to check the status of the eggs in my body. I injected myself with up to five shots per day for about three weeks. Once my body was ready, surgery (4th surgery since September) to remove the eggs was scheduled.
When I arrived, they did one last ultra-sound and more blood work. I was about to enter the OR when they provided me with even more bad news- like I need anymore, right? My body reacted too quickly to the fertility drugs and the eggs had been released. This means that I would have very few or no eggs to be extracted. And just like that, my last shot at fertility preservation was in a word- shot. We did, however, retrieve several eggs. So it wasn’t all for not.
I put the emotional toil of dealing with the fact that my chances of having children of my own were in jeopardy on the back burner- it was too much to deal with. So I pushed it under the rug and geared up for my new chemotherapy treatment.
My doctor decided to take my PICC line out and give me whats called a Medaport instead. A Medaport is a nifty little device in my chest under my skin that provides direct access to a major vein. Sits right above my boob. Little scar. Super cute.
The new treatment is called BEACOPP. Its about 4 times more toxic than the previous regimen. I’m about to start my third cycle- for a total of 5 treatments. Holy shit is it hard to handle. The cycles are 3 weeks long, and the cycle goes like this:
Day 1-14: Chemotherapy pills
Day 1, 2 & 3: Chemotherapy infusion of 4 different drugs
Day 8: Chemotherapy push of 2 different drugs
One week off, then start all over. I HATE it. I basically can’t function from day 1-14. I need help physically. I can’t make myself meals and I can’t eat out due to risk of sickness etc. I’m sick. I got chemo brain like a mf-er. Can’t drive most of the time. It honestly and truly is the worst thing I have and probably ever will experience.
I’m hospitalized for every treatment due to the length and severity of the infusions. Friday to at least Monday of each cycle I’m on the third floor in Seidman. My dad stays with me, friends visit, we order pizza and play scrabble.
I still can’t work. Luckily, a ton of very, very generous people have helped me financially. Some friends had a fundraiser for me, created a GoFundMe, and have donated. I wouldn’t be able to support myself without everyone else supporting me. I can’t thank everyone enough for that. I still struggle, but it’s been a hell of a lot easier than it would have been going it alone. I dropped my shitty health insurance and just got approved for Medicaid- yay! Hopefully they can help pay my back hospital bills.
I’ve been working since I was sixteen, and have maintained a very social and busy lifestyle. So as you can imagine, I didn’t take too kindly to adjusting my life around cancer. I spend most of my time in my home in bed. I occasionally have enough energy to hang out with friends outside of the house, or to go to dinner. But usually, its just me and my hobbies and my bed.
BUT as I write this, its January 14th and I have a PET scan this morning to make sure the cancer is gone. If it is gone, I’ll have 2 more cycles. The next cycle will start January 18th and my last cycle would start February 8th.
I’m trying not to get my hopes up, but I am hopeful and excited for the reality that I am almost done with this shit. If I achieve remission and stay in remission for five years, that means I’m cured. Luckily Hodgkins is a curable cancer… lucky me.
I’m in good spirits though, and I’m still me. Fighting and questioning everything every step of the way.
More later. Thanks for reading my first ever post. I’ll let you know how the scan goes.