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.

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

How to fix a broken squeaker

Cory always has a way of lightening the mood in the midst of something unpleasant. After one of my many recent coughing/gasping for air fits he put on a very serious face, nodded, and said: “Well, you’ve got a broken squeaker. You’ll have to get that fixed.” Toy Story 2 clearly and adorably illustrates how real the struggle is.

Today I had an appointment with radiology to fix my broken squeaker otherwise known as pleural effusion. Pleural effusion is when fluid collects between the chest wall and lungs. In my case, tumors are the cause of this fluid buildup. The medical term for “fixing a broken squeaker” is a thoracentesis.

First, an ultrasound technician came in and did an ultrasound of my left lung. Since I had to face away from the screen she was kind enough to freeze frame it so I could see the fluid pocket. I blankly stared at the ultrasound for a minute because all I saw was a tiny part of my lung then a whole mess of blank black space. It turns out that all of the black space was the fluid. Whoops.

I’ve got to be honest I’m no wimp but for some reason this procedure really freaked me out. I’ve had a paracentesis when I was first diagnosed but that fluid came from my abdomen. This time it was drawn from between my ribs through my back and I couldn’t see what was happening. Here is a fun little diagram to show how it goes down:

thoracentesis

There were a lot of people in this tiny room. We had two PA’s, an ultrasound tech, and a medical imaging student observing. They were all very kind and supportive but I was still pretty nervous. Once everyone was in their places the actual procedure did not take especially long but it SUCKED.

First the PA inserted a needle between my rib cage and injected me with lidocaine to numb the area. The needle itself was fine, just a pinch, but the pressure of the needle in my back didn’t feel great. I started to get even more nervous after they numbed me and I cried, of course, because I’m a big cry baby. After that they made a small incision and inserted a catheter into my back. Once we started draining the fluid I was a little more at ease. There was a jar next to me and I sat and watched while it filled to the brim with yellowish/brown fluid. They then removed the catheter and put a bandage on the drain site.

This next part I was warned about but it was still incredibly unsettling. Once the fluid was drained I began to cough quite a bit and I felt immense pressure in my chest when I tried to inhale. This was probably the most uncomfortable/scariest part for me. I was coughing and coughing and had a really hard time catching my breath. The medical imaging student coached me through my tears/coughs and got me back into the rhythm of breathing through my nose and out of my mouth in small breaths. The reason this happens is because the lung has been compressed with fluid for so long and once the fluid is removed the lung will be able to slowly fill with air. This creates a lot of chest pressure and discomfort until the lung is again fully inflated.

The end result of today’s thoracentesis was an extraction of ONE LITER of fluid. That’s right, a liter on my left side only. They didn’t even drain the right side. According to the National Heart, Lung and Blood institute there should be about 4 table spoons of fluid in that cavity. Yikes.

Thank goodness it’s all done with. Now I can take a fuller breath and hopefully will sleep easier without so much pressure on my lungs.

On Friday I will be meeting with Dr. Robison to review the next series of treatment plan options. I’m looking forward to getting this in motion so we can start to crush this cancer again.

On a much brighter note I must acknowledge the fabulous weekend I had. In anticipation of the thoracentesis and finding a new treatment plan I’ve been pretty on edge. This weekend I was able to kick back and relax in good company. Cory came down on Friday night for dinner and we had a nice low-key evening after a very long week. The next day Jac came to visit so we picked her up at the train station and had lunch together so her and Cory could finally meet. The rest of the weekend was strictly girl time: mani/pedi’s, tea, burritos, a drag show, brunch, and a walk by the Bristol Harbor water front. All in all, it was exactly what I needed to take my mind off of my (now-fixed) squeaker.

jac

One chapter closes, another begins

*Dusts off keyboard*

It has been a few weeks since I have written, mainly because I just wanted to focus on my chemocation and take it all in. As promised in the last entry I basically ate everything. Pizza, Thai Food, Indian Food, Salads…you name it, I probably inhaled it (and didn’t throw it up).

The past few weeks were spent processing and agonizing over my next steps. Would I go to Boston on April 7th and accept a dose reduction or would I throw in the towel? As each day that I felt more like myself passed, I could not possibly imagine going back to that trial. Despite MGH’s stellar care, this trial was just no longer for me. By yesterday morning I had my answer and I was sticking to it.

My parents came with me to this appointment. I often like going to appointments alone but on that day I needed them to help me hold it together. Plus, a bonus was not having to drive myself through Boston rush hour traffic. The carpool lane shaved off at least 30 minutes and preserved the remaining scraps of my sanity.

I first had an echocardiogram (aka gooey hospital nap) then we headed up to 9E Yawkey to meet with oncology. Tina was the first to stop in the exam room. She gave me a big hug and kiss and asked how I was doing. At that point I decided it was safe to just say it: “I think I’m done. No, I know I’m done. I’m done.” Tina has been with me through the successes and the hardships of the past year. She knows that if I say that I’ve had enough, that I’ve really had enough. Like our phone call from last month, she was supportive and said she would give Dr. Birrer a heads up.

Laura came in next and took a few vials of blood from my chest port then we anxiously awaited for Dr. Birrer to arrive. When he came in, I reiterated to him what I had said to Tina. He was very understanding of my position and without being pushy, initially offered me the option to dose reduce one last time if I wanted to. I was not in favor of another dose reduction as in my head, I had already broken up with this trial. At that point the CT scan results were not yet ready so we sat and waited in the exam room for a bit longer. I quietly stared at the walls and floor, my mom tried to make light conversation, I was just too nervous to engage. All I wanted to know was what is happening inside of my body.

Finally, Dr. Birrer came back with the scan results. In a nutshell, they were a bit of a mixed bag. A few things were reported to us:

1.) The tumors that were present at the beginning of the study were measured to be substantially smaller than when we started. This is great news because it tells me that we made some progress and the entire last year was not a waste.

2.) The fluid-filled cyst in my abdomen is still there, we still have no idea what it is and how it got there. *Shrugs*

3.) There is a small amount of fluid in my abdomen and some fluid buildup surrounding my lungs (NOT in the lungs, luckily). I’ve been very short of breath lately with a wicked dry cough so this explains a lot. Dr. Birrer said that my hospital could certainly stick a needle in there and drain the fluid. That shall be on my to-do list for the next few weeks because this whole shortness of breath thing has GOT to go.

4.) They found “progressive disease” which I take as doctor speak for new tumors. New very small tumors were found on my liver and abdominal wall. Crap.

Interestingly enough, even though I initially was quitting the study, the trial’s protocol states that if progressive disease (new tumor) is found, the patient’s trial must end automatically. So either way, the trial was done even if I didn’t want to quit.

I’m not happy that new tumors have developed and I think I’m still processing this news. I’m at ease with it right now but it will probably hit me in a few days. Most likely in a public restaurant with Cory, that’s where I do all of my best crying…poor guy. The silver lining of this news is that I can leave the study, as I wanted to, with absolutely no regrets. Since the study had to stop I no longer had the choice to continue at a reduced dose. I won’t look back in six months and think: “did I make the right choice? What if I had toughed it out just a little longer?” The decision was made for me and I can walk away feeling good about the work we did in Boston, despite its hardships.

So where do we go from here? On April 17th I have an appointment with Dr. Robison in Providence. We will discuss some of the options that we have on the table and start the process of making an informed decision about the best course of action. Until then, I have no further information.

I will use the next few days to work, eat well, spend time with friends, and get beat up by my super mean trainer (kidding, he’s the only reason I deadlift without dying myself.)

I want to take this opportunity to thank the folks at Mass General Hospital. Dr. Birrer, Dr. Dizon, Tina, Laura, Ali, Daph, and even sweet Blanca at the front desk. We have been through a lot together over the past year with this clinical trial and despite the challenges this team made me feel deeply cared about. It was very hard for me to leave WIH, a hospital I loved so much, but I learned that I was put in the most loving and capable hands in Boston.

I also want to thank everyone that supported me from near and far over the past year. It has been a wild and mostly unpleasant ride. As always, the love and support has kept me going and will continue to as we face this next treatment plan.

Love and gratitude 🙂