Bah Hum Bug

Merry Christmas everyone! Per usual I spent another major holiday in hospital. It wouldn’t be a true Jess style crisis if I did not align it with a holiday. In the future you should be MORE concerned if I have a health concern on a normal day.

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It is hard to believe that I was there since Friday. The days have kind of ran together thanks to a whole lot of IV pain medication. Here is the rundown:

Friday: Day of surgery
The procedure went well. It ended up taking longer than expected. I believe that overall I was on the operating table for 4 hours. I had a wonderful surprise! Dr. Greenberg (you may have read about her last February when I had the bowel obstruction) jumped in on the surgery! It was comforting to know she was there alongside Dr. Robison.

My oncologist removed the mass on my liver and zapped off a few other spots that we did not see on the CT scan. The other spots were on my intestine and bowel but luckily there was no need for another bowel resection. Apparently there was some excessive bleeding during the surgery because of the way the liver had to be positioned while the surgeons removed the tumor. They kept me in the ICU overnight as a precaution. I woke up in the recovery room in a lot of pain. It was well managed once I got into the ICU. So well in fact that I have little memory of anything but clutching my gut in pain as it spasmed at the slightest touch.

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Saturday

I don’t believe that I left my bed at all on Saturday. I recall being in a lot of pain. Apparently I had to be so highly medicated that I would be talking to my parents and all of the sudden I would just fall asleep mid conversation then wake up and carry on as if nothing happened. I did the same to my brother when we FaceTimed that night. It was nothing short of entertaining I’m sure.

Unfortunately I got really nauseous Saturday into Sunday and threw up the small amount of liquid that was in my stomach. I went from NPO (no food/drink by mouth) to a clear liquid diet but I could only tolerate water. My big mistake was taking three sips of cranberry juice. BLEH. How dare I? I woke up the next morning with a wicked headache, horrible abdominal pain, and nausea. Luckily they found the right combination of medication to make me feel a little better on Sunday.

Sunday/Monday
I hit small milestones. I was able to get out of bed and take small walks down the hall. The catheter came out and after lots of “tricks of the trade” like blowing bubbles through a straw in water and pouring peppermint oil into the toilet, my bladder remembered how to function. The bright side is that I no longer had a catheter, the downside was having to make the grueling 5 foot walk to the bathroom. It’s surprisingly taxing. I can now walk to and from the bathroom without calling a nurse to spot me.

Christmas Eve
Early morning was rough. At 3am my nurse was supposed to bring me pain medication but after checking my vitals and seeing that my oxygen wasn’t great she ordered a chest X-ray instead. 4 am I was woke out of a dead sleep. A woman wheeled a big machine into the room. She placed a big cold metal sheet behind my back and a heavy lead apron on top of my belly (ouch). She snapped a quick x-ray and left. I laid in my bed in pain until my doctors came around to do rounds. Though I am appreciative of my nurse being cautious, it was a bit much. Even the doctors were like “wait, really?” I spent the better part of the morning playing pain management catch up. And you know what? It blows.

As of that night I was cleared to eat solid foods, I switched to oral painmeds, and I was allowed to take walks around the 4th floor by myself.

I watched A Christmas Story and went to bed (and for those of you hospital vets you know that means sleep one hour, wake up for vitals, sleep one hour, wake up for pills, sleep one hour, wake up, call nurse to remove circulation boots, pee, sleep one hour, vitals and blood draw, sleep, rounds, repeat.)

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Honestly it was a very lonely night. When I say lonely I don’t mean that I necessarily needed to be with people 24/7. I would have been just as lonely if my parents had stayed all night. Being in the hospital after a recurrence when you are perceiving everyone else in the world to be happy/laughing/dancing/eating/drinking/exchanging presents is isolating.

Social media is a double edged sword. In many respects it made me feel uplifted to receive so many kind messages of support. In other ways it felt like I was on the outside looking in on so many warm and happy moments. Moments that I couldn’t manufacture no matter what, simply because of my own circumstances. I want nothing more than my friends and family to have the BEST experiences possible. I’m not saying if I can’t be happy, no one can. It made me feel guilty for feeling jealous and down on myself.

Christmas

In the wee hours of the morning I knew I was ready to come home. I didn’t sleep well and I listened to the woman in the room next to me cry uncontrollably all night. My heart broke for her. Over the past few days I gathered that she has a newborn and considering that she was in the oncology unit it goes without saying what she is going through. I don’t know who she is but please pray for her.

I had another visit from Dr. Greenberg before the doctors did rounds. She wished me a Merry Christmas and we made plans to hang out as soon as I’m well. I’m holding her to that. She shared the other day that she is considering going into Gyn Onc. I hope she does. She was born to do this.

Shortly after Dr. Greenberg left the doctors rounded and said that I was being released. THANK GOODNESS! Get me the hell out of there. Before I left a lovely nurse, Anne, taught me how to inject myself with Lovenex, an anticoagulant. Despite facing many countless needles in the last year, it was terrifying to inject myself. I did it and feel confident that I can do it for the next month.

I settled home at my apartment in Providence in late morning. I promptly passed out in my own bed for about 3 hours. Mom and Dad have taken great care of me despite me being a terrible patient and wanting to do everything myself. They are staying nearby through the weekend to help me transition. I am in a lot of pain but can manage by myself with a lot of things. I will still definitely need help. When I figureout what that is, I will let you know.

Thank you for everyone that visited, called and texted over the last few days. It kept my spirits up. The flowers and gifts were so kind and generous. Thank you, thank you, thank you.

I hope everyone had a lovely holiday with their loved ones.

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Twas the Night before Surgery…again.

So here we are friends. The evening before major abdominal surgery. Many of you have been asking how I am. Inquiring about my mental state leading up to yet another surgery. I have to say, overall, I’m  doing decently considering the circumstances. I’m mostly just cranky because I haven’t eaten in 26 hours for surgical prep. Only 11  more to go. Rawr. Surgery is at 12:30 wish me luck (although I might die of starvation before I even get to the operating table)

Anyway this is how I imagine things will basically go down tomorrow:

Cancer: voldemort

Me: Image

Cancer: voldemort

Me: Image

Cancer: Lord-Voldemort-Movie-Quotes

Me: Elf-You-Sit-on-a-Throne-of-Lies-262x170

Cancer: voldemort

Me: Brick-Tamland  i-killed-a-man-with-a-trident-e1321632143203

Cancer:Image

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Thanks for the well wishes and I will see everyone on the other side of the operation 🙂

Surgery Rescheduled

The surgery has been moved from Monday the 23rd to THIS Friday, December 20th. Jeepers. So much to do, so little time.

Many people have been asking what they can do to help. I appreciate your thoughtfulness and willingness to help. I will update the blog as I know what I need. It may require assistance with periodic light meal prep, pharmacy runs, grocery runs, transportation to check ups as I do not think I will be driving for at least a couple weeks. I will let you know when I figure it out myself.

So for Christmas I’m giving my tumor the gift of an all expenses paid trip to a biohazard dump. BYEEEEEE.

 

Surgery is on the books

Thank you again to everyone for checking in on me over the past few days. Your kindness is appreciated 🙂

I’ll keep this one short and sweet.

I will be having surgery to remove the tumor this coming Monday, December 23rd first thing in the morning. My oncologist, Dr. Robison, will be performing the procedure at Women & Infant’s Hospital in Providence. I imagine that I will be in the hospital for a few days (I’m not entirely sure how long) but I plan to recover at my apartment in Providence upon discharge. Once I am coherent enough to string together full sentences, I will update the blog. My parents will be staying in the area for a few days following my surgery to help me out as needed.

For those of you lucky people that received incoherent, pain killer induced, phone calls from me last time…expect it again because I have zero memory of it and tend to believe that I do not have control over what I do with my phone on IV meds.

Enjoy your holiday season everyone! Don’t drink and drive, pretty please.

 

 

 

A zebra amongst horses

You know your life is jacked up when you are delivering the following as “good news”.

Good news everyone! I went to Mass General in Boston yesterday, escorted by the lovely Sheila Enderby (my chemo nurse). We had a consult with Dr. Dizon, a former W&I colleague of my oncologist. I entered with the intention of learning about a trial chemo that I qualified for at the recommendation of my gyn. oncologist.

I sat in the little examination room with Sheila before the Doctor came to see me. Anxiety through the roof. A sweet, 24 year-old medical student came in and took an extensive history. As much as I liked her, my nerves were getting the best of me, and I wanted to rip her head off if she asked me ONE more time the age of my first menstrual cycle. I think she was nervous and trying to be thorough. Seriously though, how many times do I need to answer the same questions? After the medical history interrogation, the doctor finally came in an hour and 3 minutes later (but who was counting?).

When Dr. Dizon walked in, I instantly loved him. He is a small, stylish, Filipino man. He wore a purple velour sport coat and matching purple socks. His outfit was completed with a bow tie. He put the CT scans on his computer and we looked at the images together. He showed me exactly what I was looking at and pointed out where the tumor is. You could tell that he was surprised and relieved to see that it was small and only in one location.

He confidently told me that it was his professional opinion that treatment beyond surgery is unnecessary at this time. I think we all let out a collective sigh of relief as there were talks of chemo initially. Cue twisted thinking: Thank goodness it’s only a little bit of cancer! Thank goodness I only need another major abdominal surgery!

He said “On this earth there are horses and there are zebras. You my dear, are definitely a zebra.” This is a really polite way of saying that it is effing bizarre that I have the disease that I do. He also said something that helped me to reframe my thinking surrounding this illness. He is a straight shooter and flat out told me that this may not be the end. This could be the beginning of many more recurrences. He basically said to consider it to be like my own version of diabetes. It’s not ideal, it’s not good, but as it comes we will treat it to the best of our ability. If it comes back we cut it out. Grow tumor, find tumor, zap tumor, lather, rinse, repeat.

So many times over the past week my friends and family have heard an emotionally-taxed me say “is this really my life?” Dr. Dizon essentially said yes, this is your life, but we will do everything we can to manage it. Before the goal was to never do this again. I was sure that my cancer was one and done. His honesty forced me to embrace the fact that, yup, this is my reality. Who knows, maybe I’ll never have a recurrence again, or maybe I will. Either way right now, it’s not a death sentence.

This has not stopped me from thinking about mortality. I know you’re thinking, “oh stop you’re going to live until you’re 96 like the rest of us poor souls. Stop being dramatic.” I am sure that I am scaring my mother right now by writing about death (Sorry Mom, but don’t worry. I still plan to outlive you). I had a long existential life talk with Sheila yesterday and I realized that I am less afraid to die and more afraid to live an unfulfilled life.

It may sound extreme to think about but sometimes you have to go to that dark land of “what if” sit with the irrational fears, grieve, make peace, and come back up for air. So that is what I am doing. Problems only arise when you get lost in the land of “what if”. Do not fret my friends, I do not intend to stay there. It’s healthy to visit but not to move in.

My biggest fear surrounding living with the prospect of continued disease is having it prevent me from reaching my goals. I’ll be damned if cancer-recurrence prevents me from traveling, publishing written works, celebrating the accomplishments of friends and family, growing professionally, watching my students graduate, adopting children, and/or marrying my future best friend (TBA). If living with disease means needles, blood work, surgery, recovery, hospital beds, CT scans, and medication, so be it. After last year, short of getting shot in the face with an AK-47, I can handle any physical challenge that comes my way. I just don’t want to miss out or continually feel like my life is on hold. Although looking back at my photo review of the past year I guess I did a better job of “getting busy living” than I thought. Perhaps this is all within my control more than I think.

End rant.

Anyway, I will be channeling my inner Esther Garbus as I approach surgery #5 with feisty energy. Perhaps I’ll also channel the “I don’t deserve this crap” anger into scaring the piss out of my tumor so it never grows back.

On a lighter note I had the most lovely day in Boston post-oncology consult with Sheila. My chemo nurse, on her day off mind you, took the time to come to my appointment with me cross state lines and proceeded to take me out for celebratory cocktails after at the Liberty Hotel:

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This is the selfie we texted to Dr. Robison, my primary oncologist, after receiving news of no chemo:

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I am so lucky to have this medical team. They are family. I don’t know many other medical professionals that care more about their patients than these people. I love that I can go to an oncology consult and follow it up with lunch and cocktails with my nurse. We can talk about life and death and laugh about it. It’s remarkable.

I’ll end by saying thank-you again for the continued support! I will be updating the chronicles as details unfold regarding surgery and recovery timeline.

With love and gratitude,

Jess

Here we go again

I am sorry to share this news via my blog as it is highly impersonal but I honestly don’t have the energy to retell this story. After many months of successful cancer treatment and a stable CA-125, a recent blood test and CT scan has revealed that I have had a recurrence.

There is a small mass near my liver that my oncologist and the tumor board are concerned about. This will require another major surgery (unfortunately it cannot be laparoscopic as she must physically move around my liver). It may also require additional treatment whether it be a different kind of chemotherapy or some sort of infusion or new drug. At this point I am meeting with my oncologist and another in Boston to gather information to formulate the most effective treatment plan. I do not yet have a timeline for what is happening when but I will be regularly updating my blog (http://boldbaldbattle.com, tell all your friends to hop along for the ride).  Per usual my work has been very loving and supportive.

My emotional and mental state at current is stable. I’ve gone through the whole cycle of disappointment, sadness, fear, and anger. Unlike last time I’m pretty stuck on anger. Luckily, as I learned once before I have a worldwide, giant, support system and have no doubts that there will be another overflow of positive energy.

I also think I should say for the record, because I got in trouble with more than one person for this, I will NOT take Big Daddy Taxi to any doctors appointments or treatment this time.

My chin is up and so are my fists.