#canciversary

I apparently really don’t post to this page often anymore. Once again it’s my cancerversary! 8 years! So much more to celebrate despite this strange time we find ourselves in. Another year here. A new apartment in a nice neighborhood. Amazing friends and family. I’m healthy, no cancer scares. I got to travel this year, which may not happen again for a long time. We are financially ok during all this Coronavirus stuff because Andy has a great job and has already been working from home. We have a new puppy- 15 week old mini golden doodle named the Marvelous Miss Maisel or Maisie for short. We take lots of walks to get fresh air and exercise. I can’t get tested, but I’m over a 13 day fever so might have immunity or whatever that means. We are surviving. It’s amazing how much cancer has prepared me for this. The structured hand washing and sanitizing. The ability to celebrate little victories - I finally secured an instacart delivery, Maisie went poop outside, etc. I’m used to the feeling of waiting. I hate it, but I’ve found ways of managing it. And I can deal with it now. It’s not easy, it’s not fun, but I know I can make it through whatever comes and I have the tools to figure it out. Anyway, I found a place that delivers gin so I’ll be celebrating tonight.

One year ago today I was diagnosed with stage IV Hodgkin's Lymphoma.  This morning, over a celebratory brunch, Andy and I were recalling the details of that day.  

I remember it was a beautiful day and I got a message that morning from Carrie to meet at noon.  So I texted Andy, told him the time, and called my mom.  I remember she wished me luck as I hopped on the subway to meet the doctor.  

Andy and I met at Union Square Park 15 minutes before we went in to the clinic.  We had a moment hugging in the sunshine and promised each other we would somehow handle whatever news we were about to get. 

Carrie brought us into an open room and Andy and I sat.  She was very calm and gentle as she told us the preliminary results were hodgkin's lymphoma.  It took a few minutes before it sunk in and Carrie paused as I numbly allowed myself to digest the information.  Carrie went on to tell us the survival rates, the treatment options, and her recommendations for our oncologist.  As we left the office she hugged us and told us to call if we had questions.  We left and went back out into the beautiful spring day.  The appointment only took about 30 minutes, but it felt like we had been in there for hours.  

I remember hugging Andy on the sidewalk outside the clinic.  It was then that the tears really began.  But it was surprising that they were tears of relief.  We sat in the park and called our parents and siblings.  I remember as we left the office thinking that calling my mom and dad and sister was going to be the hardest thing I would ever do.  My mom is a cancer survivor and I didn't want her or my family to feel anymore pain from this disease from my going through it.  But, my family was amazing as usual.  They calmed me down, said they loved me, and volunteered to come to NY to help us out.  

Then, of course, there is that awkward moment of trying to figure out what to do after you get some of the worst news of your life.  I think we decided to have lunch at a diner and get Pink Berry - after, of course, buying more kleenex.  Throughout lunch we held hands, cried and promised that we would get through it together.  As we left the diner, I ran into a professor from grad school.  We hugged and caught up, but I didn't tell him about the diagnosis.  How do you bring up that you just, literally 1 hour ago, got diagnosed with cancer?  He was having coffee in between classes and I guess didn't think I should bother him with my cancer.  Even though I knew that this incredible man would feel nothing but compassion and care because he is just that kind guy.  But instead, I smiled and said I was ok, when he asked.  We walked back to Union Square with our FroYo and found a bench in the sun.  We sat in the silence eating our ice cream as the weather grew cooler.  An hour later we hopped on the subway to go home to Brooklyn.  On the walk to our apartment I decided that I would write a basic mass email to our friends and family.  I didn't want to feel alone in this and I'm an introvert who can sometimes have a hard time asking for help.  I figured I would put it out there.  I didn't want to hide from  it.  I actually found that I wanted to share it.  I wanted people to know.  And a mass mailing allowed me to let people know all at once without getting overwhelmed with personal phone calls.

It's funny reading the letter I wrote to my friends.  I called Hodgkin's the "good" cancer as I tried not to overly alarm my friends.  I now know that there is no good cancer, there is just cancer.  Percentages mean nothing when you are talking about your life.  

Things moved quickly after that.  The days that followed were packed with doctor appointments and tests.  A PET scan to find out exactly what stage the cancer was in, a barrage of tests to assure my body would handle the chemo, more biopsies for the clinical study I wanted to take part in, and a surgery to place a port catheter for chemo in my chest.   We began to quickly realize that our vacation wasn't going to happen.  I didn't quite feel that I could enjoy the beaches of Mexico knowing that I had a tumor which was slowly cutting off my airway.  That, combined with the coughing, itching and night sweats, was enough for us to finally admit that we needed to cancel.  Luckily, for the first time, we had bought travel insurance and (almost a year later) we were able to get every penny back.  

Before that day I had tried to imagined what getting a diagnosis like this would be like.  I thought I would be emotionally crushed, or I would be angry with the world and determined to fight, or maybe I would just want to hibernate from the world.  But I found instead that I just felt ready.  My friends started responding to my mass email with sympathy and encouragement.  They told me to fight.  They called me strong and brave.  But I didn't feel strong or brave.  I just felt ready.  

I don't think there's a conscious decision to be a 'fighter' when you have cancer, at least there wasn't for me. I had been sick for 4 months and I was just plain tired of being sick.  I think I quickly accepted cancer because it meant I had a starting point.  A diagnosis meant a course of treatment, which meant getting better.  Cancer was not what we wanted, but it was a beginning.  I was hopeful, I was probably in denial, but I was hopeful.  For me the diagnosis was kind of like rock bottom, and the only place to go was up.  

It was by no means an easy journey from that point to remission.  It was a shitty uphill slog.   But one year later I am still here, and while I'd never choose to go through this year again, I am thankful that I am finally able to put it behind me.  

Thank you to my amazing family, my incredible fiancé, my wonderful roommate, and my fantastic friends for sticking with me through this past year.  Now someone, please buy me a drink!  I deserve it! 

So today marks a year since my bronchoscopy.  It was a horrible experience. We met with the surgeon on Monday and we scheduled the bronchoscopy for 2 days later because Andy and I were planning to leave for Mexico in a few short days to celebrate my birthday.  I wanted to rule out this cancer nonsense as soon as possible so we could focus on what was actually wrong with me and I could go off to Mexico and celebrate.  Rushing to schedule this bronchoscopy we took the first available slot for surgery which was noon on Wednesday.  Anyone who has had any surgery before knows that this is a cardinal sin and you should always aim to have your surgeries in the morning because if you wait till later in the day you end up starving because you can't eat or drink after midnight and they inevitably run about 3 hours late so you end up cranky, hungry, and miserable.  Which is exactly what happened to me.  We arrived at 11:30am, and I left Andy sitting in the waiting room as I went to change, get my vitals and wait in the patients waiting room.  Finally, at around 3:30pm I was brought into the operating room.  I laid down on the table as Carrie, Dr. Sung's nurse, described what was going to happen.  Basically, they were going to knock me out as they put a tube down my throat and biopsied the lymph nodes in my lungs.  The entire procedure would take about an hour but before we began, I told Carrie that Andy had been waiting for the last 4 hours and that I would appreciate if she could talk to him after they had finished and as I woke up in recovery. It was understood that I wasn't interested in keeping information from my fiancé.  She promised she would talk to Andy, and then asked how I would like to get the results: by phone or in person.  I couldn't imagine being told a cancer diagnosis over the phone, so I opted for in person.  Hopefully she could rush the results for Friday so we didn't have to wait over the weekend.  

Dr. Sung came in the room, said hi, introduced me to the other doctors and began prepping for surgery and I finally took a look around the room which was plastered with posters about cancer.  As I drifted off to sleep, deeply breathing in the fumes and counting backwards from 100 the hugeness of the moment finally hit me.  We had tossed around the word 'cancer' a few times, but this is what today was all about.  I was going to find out if I had cancer and I was scared.  I was terrified.  I cried.  And the next I think I recall was waking up in the recovery room.  

I was woozy, thirsty, and desperately trying to focus.  Somehow, I had ended up with some papers from my Dr. Sung, but I really have no recollection of talking to him.  My uvula felt like it was taking up my entire throat and the recovery nurse kept yelling at me to stop trying to put my fingers in my mouth to pull it out.   I remember pleading with her for some water and she begrudgingly gave me 3 sips of apple juice - the first thing I had taken in all day.  After another 45 minutes of recovery I was allowed to dress and meet Andy.  

We left and I immediately went to the corner store and bought a huge bottle of water which I downed in about a minute and decided that I had earned Pink Berry.  We ate our dessert (difficult for me since my uvula was severely swollen from the surgery) and tried to enjoy the beautiful spring day and tried not to think about what would come in the next few days.  We had a beautiful vacation planned.  It was almost my 30th birthday.  And hopefully we were one step closer to finding out what was wrong with me.  

Its strange being done with treatment and thinking back on these days leading up to the diagnosis.  In the last few days I have started to develop a cough.  This is most likely a side-effect (hopefully short term) from the radiation and its fairly normal. I have a follow-up with my radiology oncologist on Thursday to find out more and I'm hoping steroids are not called for, but being able to breath deeply when I'm working out instead of coughing until I feel like puking would be welcome.  

The other night as Andy and I were trying to go to bed, I couldn't stop coughing.  I was trying to calm my lungs and focus on my breath and try not to be reminded of the past.  But we were both aware of the fact that only one year ago I was coughing all the time and when we laid down for bed I often coughed so much I would make myself throw up. So, because I wanted to lighten the mood I tried to make a joke.  "If this lasts for 4 months then we'll call the doctor." There was a brief pause and neither Andy or I laughed.  I immediately apologized.  It was a terrible joke.  And I love terrible jokes!  But even for me it was too much.  It definitely needed to be said, to be acknowledged, but it wasn't funny.  

One year ago today I had my first CT scan to try to get a better picture of what was going on inside of my lungs.  Andy arranged his schedule so he could accompany me and I managed to get someone to cover my shift at work, little did we know this would be the first of many doctor appointments that he would be tagging along. We were greeted by Dr. Allen as soon as we checked in and she took us into an exam room and began to explain the results of my blood work done yesterday and why the CT scan was scheduled.  According to the Xray done the day before, there were some questionable spots in my lungs that she needed to get a better picture of.  She also explained that the blood work showed I was severely anemic, which totally explained the exhaustion I was feeling, and could be treated with iron pills. But my white blood cell count was also elevated.  The white blood cell count could be caused by a number of things and Dr. Allen didn't want to alarm us too much until we had more information from the CT scan.  So with that I headed upstairs to the radiology floor to await the CT.

I remember when I called my mom about having a CT scan she jokingly said she was jealous because she never had a CT scan before. Little did we know that soon CT scans would be a normal experience for me, so normal in fact that I don't really remember the exact details of my very first one, but after it was over, Andy and I went back down stairs to await the results with Dr. Allen.  

After about a 1/2 hour, Dr. Allen called us into a room to discuss the results.  The CT had confirmed what she originally saw in the X-ray: enlarged lymph nodes.  According to her there could be quite a few explanations for this.  The top two contenders were sarcoidosis and vasculitis.  She went on to briefly explain each of the diseases I might be facing, but there seemed to be an awkward pause in there air as she added that the one thing she wan't talking about yet: the "C-word."  I remember that she called it the "c-word" rather than "cancer."  Unfortunately, we weren't able to rule out cancer at this time.  It seemed like a rare possibility, but we wouldn't know for sure until someone was able to biopsy the actual enlarged lymph nodes.  So with that, I was given the name of a Pulmonary specialist, Dr. Sung, and an appointment for Monday, April 2.  

Andy and I left and immediately started googling sarcoidosis and vasculitis, our 2 most likely candidates.  We jokingly said we were team sarcoidosis, since according to the web seemed like the "less worse" of the two.  I wanted none of it.  Both seemed like bad diagnoses, but after suffering for 4 months I was ready to face it and get better... or at least start treatment that would be ongoing for the rest of my life.  

In the days before meeting with Dr. Sung, I never once searched the web for cancer.  I was convinced that sarcoidosis or vasculitis was the cause of my suffering.  I started taking heavy doses of iron pills in hopes of getting my energy back and awaited my next appointment.  

April 6th will be exactly one year since my diagnosis of Hodgkin’s Lymphoma, what some people would call my ‘canciversary’. When I was first diagnosed, I didn’t think I would ever look forward to celebrating getting cancer, but I think its more of a celebration of life, living with cancer, and all that comes along for the ride. Much of the last year has been awful, but there has also been a lot of good. I got to meet so many wonderful people also touched by this disease and together we found a common bond. I discovered what amazing friends I really had and how much the love and support of my family actually meant.

This past year has been quite the adventure. I have been through a lot of milestones, but as I near my ‘canciversary’ I am beginning to feel in aw of how incredibly far I have come since receiving that life changing diagnosis. And I’m going to take the next few days to reminisce about what I was going through last year as we headed into the unknown.

March 28th 2012 - My first Actual Doctor Appointment:

On this date, exactly one year ago, I finally persuaded myself to go to the doctor after being sick for 4 months. In my own defense for 3 of those months I was waiting for my health insurance to kick in and I was going to free clinics run by med students who were clueless as to what was actually wrong with me. I was given prescriptions for allergies, pneumonia, asthma and still I continued to suffer and continually get worse. The last month, after my insurance had finally kicked in, I was too scared to face the fact that something was actually wrong with me as I tried to convince myself that I was getting better. But the exhaustion, coughing, itching, night sweats and now weight loss continued. My Symptoms were as follows:

-the cough: this started in October 2011. I had what I thought was the flu, but the coughing never quite went away. It continually got worse and worse and although sometimes it changed, it never went away. The coughing became so bad that at night I would cough until I finally threw up and only then could I start to calm myself enough to lay down for bed.

-the itch: It was a strange warm winter and I thought maybe this was allergies. Plus with the new store opening in Grand Central I was convinced that 100 year old dust was the cause, but the itch got continually worse. And it was terrible. I’m talking I had to cut my nails and wear gloves to stop from itching my skin raw! I would wake up bleeding after itching in my sleep. And no skin creams or anti itch medicines would help.

-the exhaustion: I started a new job at Apple in October and I thought that the tiredness that I was feeling was just part of the excitement of opening a new store with Apple. But, this was more than just being wiped out at the end of a long day. I went from working out 6 days a week/ 1 hour per day (P90X) to getting winded walking down the street and up stairs.

-the weight loss: As I said, I was exercising a lot so I did lose a lot of weight with proper diet and exercise. However, at this time I was too tired to continue the workout regiment and began to eat comfort foods rather than salads the weight kept on coming off which really started to scare me.

-the night sweats: All the med-students at the free clinics had asked me about night sweats and I continually said no, that I wasn’t sweating at night, but looking back, I now realize that I totally was. I thought that waking up warm and a little sweaty was just due to the heat in my apartment rather than a symptom to what was wrong with me.

A blessing in disguise came when I suddenly had an unexpected day off and found a random doctor who had an opening on zoc doc for the next day.