Infused with love…and antibodies…and chemo (but mostly love)

Holy moly I am feeling the love! Usually I end my entries with the appreciation I have for those cheering me on. I still receive daily messages from family, friends and supporters from all over the globe. It is that encouragement that helps me to continue this fight. Thank you for your unconditional kindness.

The love fest continued yesterday at the Women and Infants infusion center. It was like coming home.

I was lucky to be joined by the ever handsome and supportive Cory Tysoe. He came up to Rhodey the night before and we enjoyed taco Thursday (doesn’t sound as good as Taco Tuesday) followed up by a documentary inspired by this YouTube sensation: Winnebago Man (aka “The Angriest Man on Earth”)

The documentary was essentially a result of Netflix Roulette. A little offbeat but worth a watch if you want to see the impact of becoming a viral internet sensation.

As you can see the evening before new chemo wasn’t tense or worrisome. We just went about out night, a rare midweek dinner date at home, and I adored it.

The next morning while I pulled myself together (put on sweatpants) Cory made breakfast because he’s a stud. After breakfast we packed up my infusion supplies (phone chargers, a cozy blanket, books, etc.) and made the 1.9 mile journey to W&I. ONE POINT NINE MILES. Beats the hell out of the 2 hour commute to and from Boston.

My former chemo nurse Sheila is now my nurse navigator and straight hooked me up at the infusion center. She got me a room with a BED! I only had that once in my previous IV infusion experience. It is a rare treat, especially when you’re receiving Benadryl pre-drugs (right Jen?).

My new chemo nurse was at a conference so Sheila set me up with “boss lady” Heather (Sheila’s words, not mine). “Boss lady” has been in women’s oncology for over 17 years and she was amazing! When she accessed my port I barely felt it and her bedside manner was unparalleled. She had a sunny disposition and made sure that Cory and I were comfortable. I am a major fan of her. I’m also a fan of the fact that her and Sheila are working on assigning Rosa as my regular chemo nurse. Rosa treated me previously as well as my friend Jen. I adore her and I’m happy to be seeing her again.

I’ve talked about this a lot in my blog before but I have to stress what a strong sense of community WIH has. Everyone remembers you from the front desk to the phlebotomist to the nutritionist to nurses you didn’t even have! All of the aforementioned people popped in my room to say hello. They weren’t pleased that I had to come back but I did feel the warm welcome. I think that it gave Cory some peace of mind to see me surrounded by such loving and positive people.

I’m painting a rosey picture here but the reality is that no one looks forward to chemo infusions. What I can speak honestly about is that I look forward to the warmth felt in this particular infusion center. It turns a crappy situation into an experience not quite as bad.

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Even though Sheila works in the main building now, she stopped by in the afternoon to say hello. I was deep into my Benadryl nap and I felt someone jump on top of me. In true Sheila fashion she climbed into bed to give me a big hug and say hello. This would only be weird if it wasn’t her.

Overall the infusion went well. We were only there for about 4 hours (in comparison to my previous 8-10 hour stints). I was also told that I will be there for even less time in future infusions, maybe 2 hours max? Honestly, once the Benadryl hit my veins it was all over. I fell fast asleep and only woke up periodically when the IV pump beeped to switch over to the next drug. Poor Cory sat in the dark room for hours answering work emails while I passed out.

When it was all over I was famished and had an undeniable craving for Harry’s Burger bar. So Harry’s it was! I housed two sliders and some fries then immediately went home and took another 4 hour nap. I woke up around 8pm to my darling washing dishes and tidying up the kitchen. Seriously where did I find this man?! (Thank you for being born Sam Favata, without last year’s birthday celebration I would be Cory-less). Cory made me a cup of tea and we cozied up on the couch and watched hours of Top Gear. Another perfect evening at home.

Aside from feeling tired I generally felt well after the infusion. It wasn’t until almost midnight when I went to lay down and was overcome with nausea. Unfortunately I threw up. I don’t believe it was a result of the chemo though, it was probably gorging myself with burgers and fries then topping that off with some Ensure plus. Too much for my little tum tum.

Today I feel perfectly normal so I’ll say that new chemo thus far is a success! Let’s hope that it’s killing tumors so I can really call it a success in a few months.

Next week I will be joined by my lovely parents so they can see first hand how well I’m being cared for 🙂 In the meantime I return to normal life. Today I’m popping by the Izzy Room at Hasbro Children’s Hospital to see my dear friend Sarah pull off the greatest disney party of all time for the little patients and their families. Tomorrow I have the honor and pleasure of attending my cousin’s bridal shower and visiting with family in Connecticut. Monday- back to work.

I want to thank everyone again from the bottom of my heart for the love and support. Every drop of it is internalized and greatly needed.

Fight on.

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All systems go: A new treatment plan in motion

What a day, nay- what a week.

At work we are in the midst of the course registration frenzy. During this time there are a lot of time sensitive concerns, a high volume of varying needs, and general stress. On top of that all I can think about all week is:

1.) I need to stop hacking a lung or I might turn myself inside out.

2.) What treatment plan will provide for me the best quality of life

3.) Pizza (because pizza is usually at the forefront of my mind).

My supervisors and colleagues have been very sensitive to my recent and ongoing challenges and stepped up in a huge way to ensure that I could rest my body and ease my mind. I didn’t realize just how necessary it was to just decompress until I got home, got into bed, and felt all my insides just ache.

STILL Fixing a Broken Squeaker:

Today was a big day. First of all, the coughing has gotten out of hand and although I had some relief after the thoracentesis, I underwent a second this morning. After performing an ultrasound on both lungs they determined that the left side was STILL worse than the right side and they again drained from the left side.

No Farva, that’s not Liter-Cola, it’s another full liter of my tumor juice.

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Sheila, my now fancy nurse-navigator, was a doll and went with me to observe the procedure and wiped the tears from my eyes and goopy nose while I periodically whimpered. The PA that performed the procedure was VERY good and although it was still a difficult procedure to endure, it wasn’t as traumatizing as the first time.

There is still some fluid boppin’ around in there but I can certainly breathe even better now. Slowly, we’re making progress. I just pray to the good heavens above that I don’t have to have this procedure done again anytime soon. Two in one week is enough torture.

The Treatment Plan:

Prior to draining the pleural effusion from my chest, I met with Dr. Robison to carefully weigh out all of the treatment options we have in front us. After great consideration, we agreed that we would try pairing Avastin (an antibody) and Taxol (a commonly used chemotherapy that I’ve had previously). There is research to suggest that Avastin in combination with Taxol yields more promising results than Avastin alone. The decision to start with a chemo-combination as opposed to Avastin on its own was also heavily influenced by the amount of fluid that has been collecting in my chest. The Taxol should do a good job of drying that up. Eventually we will be able to taper off the chemo and only use Avastin. I do not have a timeline for this.

The up-sides:

  • Will provide good quality of life
  • Minimal side effects
  • I DON’T have to take it at home (it will be an outpatient infusion)
  • Treatment will occur at Women and Infant’s in Providence (less than a mile from my apartment)
  • I already know that I tolerate Taxol well

Moderate-Bummers:

  • At least for the first few months I will need infusions once per week (still not as bad as the first time)
  • I may lose my hair again. But even so- I know I have a nice round head and in the grand scheme of things feeling well trumps having hair.

With all of that being said we are wasting no time! My first treatment begins next Friday and I plan to be there with the ever handsome and delightful Cory Tysoe. Little does he know that he will just have to just watch me pass the eff out once they toss some Benedryl in the IV (Benedryl naps for life!). Cory- you should probably bring a book…

So in short, it’s been a BIG week of mixed experiences and emotions but I’m still full of fire and will do everything I can to claim my life as my own and NOT cancer’s chew toy.

Mom, Dad, Adam, Cory, family, and friends (I’d be typing names for decades, sorry). Thank you for always having my back, always believing in my ability to be well, and helping me to navigate and endure the ups and downs of this disease.

So much gratitude…

Jess

Do you feel the love? I feel the love. Come on, come on…

Exactly 9 months ago today it was Valentines Day. But not the hearts, flowers and all the bullshit kind of day. It was more like a “12” on the 1-10 pain scale, intestinal obstruction, new chemo at a new hospital kind of day. I could say with certainty that it falls in my top five worst days of all time.

It was my third round of chemo but my first infusion at Women & Infant’s hospital. My roommate, Kelly, was kind enough to bring me in early that day for an emergency 7am visit to the doctor having been up all night with excruciating pain in my abdomen. Not the best way to start a day of chemo (at a new facility no less). Little did I know that this emergency visit would lead to a ten day stint in the hospital (many of those days being NPO). Luckily my sweet Stacey volunteered to be my Valentines date and stayed with me the entire night when I got admitted.

I’m jumping ahead of myself. I swear I have a point here. Back to the chemo infusion-

I get sat in a little room with two recliners and my chemo nurse walks in and introduces herself as Sheila. She’s tall and very eccentric looking. Edgy, multi-colored hair and a laid back but confident and comforting approach. I’m going to be quite honest with you, the actual infusion was a skosh fuzzy because Sheila hooked me up with a solid dose of pain killers. Despite my hazy memories of the actual few hours Sheila took care of me, I’m going to infer that she did a great job.

Sheila continued to see me almost weekly. We got into the “chemo rhythm”. She knew I liked to check my work email before my Benedryl nappy-time cocktail so she would always save that for last. Her enthusiasm for my CA-125 improvements matched my own and when times were not-go-great she was always honest but reassuring. I don’t know if it was fate or luck but I bagged myself the perfect chemo nurse.

As the weeks went on our chemo routine turned into a sincere friendship. I knew this with certainty when the girl waited an hour after her shift was over to find out my CT scan results on a FRIDAY and proceeded to invite me to the bar, buy me a beer, and tell me that I was cancer free.

Nine months later, Sheila and I are together again but not for a port saline flush or further treatment. We’re at a concert, throwing back a beer, and enjoying some great bands. How appropriate that exactly nine months later we’re enjoying a high energy, upbeat, evening out together. Shocking considering that she was actually poisoning me for many of those months…

It’s even more appropriate that we’re seeing The Mowgli’s. A band I admittedly only got to hear of this past year but one of their more mainstream songs “San Francisco” kept me upbeat during some really dark days. Watch this and don’t smile. I dare you (you won’t be able to)

I must admit that I wrote everything above this link prior to going out tonight. I was just so excited to see some great bands live, that was enough for me. Never did I imagine what would happen after the show. Sheila remembered me saying that San Francisco was a meaningful song for me and secretly arranged with her friend from the radio station, 95.5 WBRU, for me to meet The Mowgli’s!

I honestly thought we were just going to meet them on the fly because her friend worked for the radio station hosting the concert. It turns out everyone, including the band, has known about this for weeks and they even autographed a bunch of gifts and put it in a WBRU gift bag for me! We hung out for a while after the show and I was quite literally shaking. It may have been a combination of being starstruck plus them taking the time to be so nice to me when they really did not have to be at all. We hung out, talked, ate fortune cookies, and I even met their dogs. I couldn’t have been happier and more overwhelmed.

More than anything I am amazed at Sheila for knowing how meaningful this would be and making the arrangements just to put a smile on my face. She is remarkable. There is a special place in heaven for a person like Sheila Enderby.

Check it out!

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I can now go to sleep a VERY honored and happy girl.