Summertime Sadness: Chemo Del Rey

I haven’t written in over twenty days. This is uncharacteristic of me. Even if I am not writing on the blog I am at the very least writing something privately for myself. I have felt unmotivated and uninspired to put words on a page because what I have to say feels whiney and pessimistic. What I have to say is so opposite of my last optimistic “this is an opportunity!” post. I am in the midst of my first month of this chemo trial and I am very unhappy and often discouraged.

These drugs make me feel sick regularly. On a good day I still feel exhausted. I don’t look forward to foods I used to love. In fact, I don’t look forward to eating at all. I rarely feel hungry and eat out of necessity. I used to take so much pleasure in meals and the experience of dining. Now I could look at an incredible menu and only have a taste for the glass of water in front of me.

Imodium has become a staple item in my purse as my stomach will turn on me at a moment’s notice. It is inconvenient, embarrassing, and makes me anxious to be too far from places that are familiar like home or work.

Nausea is common throughout the week but not quite as terrible as when I had traditional chemo. I have been resupplied with the usual suspects: my good buddies Zofran and Compazine. Zofran will keep me nausea free for at least 8 hours so vomiting is not as common. I had a freak vomiting episode before work early this morning but felt better shortly after so I carried on as normal. Breakfast stayed down, to work I go (sorry Aaron).

The rash. That stupid [expletive] rash. The chemo drugs have caused me to break out in serious acne all over my face, chest and back. It’s embarrassing. I was more embarrassed about that rash than when I lost my hair. At least when I was bald I could cover it up with a fun wig. My dear friend/colleague Kristin told me about a product called ‘IT-Bye, Bye, Redness’ (It costs about $38 at Ulta Beauty) and it changed my life. Although you could still see the 80-100 white heads that claimed land on my face, the redness of the rash was virtually unnoticeable in a way that no other product could cover it.

The rash is luckily quickly subsiding. We attacked it with a prescription gel and a prescription acne pill. It basically dried the shit out of all of the white heads. Little by little they are going away. Unfortunately the side effects of the acne pill include nausea and stomach troubles. Now the Imodium is on double duty.  It also makes your skin more susceptible to sun burn (as if I wasn’t a sun burn magnet already). I was wearing SPF 50 at Pridefest last weekend and my back still felt like it was on fire after a few minutes in the sun.

I’m finding it hard to once again accept that I have limitations. It is even more apparent in the summer time when most activities revolve around eating, drinking, traveling, sunning, and being scantily clad (on the beach at least). I can’t fully enjoy activities that I love right now because I’m uncomfortable with myself or I just plain don’t feel well. This has resulted in isolating myself  more than usual. I just come home, lay down, and get lost in Netflix. It’s terrible and I am aware of it.

Aside from physically not feeling well, the entire experience is different this time. I have to travel much farther to get to the hospital. Usually an hour and a half whether I drive or take the commuter rail during rush hour. I do like the medical team at Mass General but MGH doesn’t have the same comfort that I feel at WIH. When I’m at Women and Infants I feel like I’m home, like I’m with family. On the way to Mass General, despite how nice and personable my medical team is, I dread it. I associate the city of Boston with being annoyed, angry, scared and sick. Maybe because it’s just not as close to home. After a bad day at WIH I could be back in my bed in 10 mins. In any event I will forever call Women and Infant’s Hospital “my home” regardless of how much treatment I have to endure in Boston.

What I really, truly, need right now is some evidence that this treatment is working. I need evidence that will help me to buy in because taking chemo twice a day, every day, and feeling shitty everyday is not ideal for my spirits right now. It’s turning me into a curmudgeon. Apparently it’s too early to check my CA125 and definitely too early for a CT scan so I have no idea if it’s even working. I just need to blindly trust for now.

The closest to “assurance” came from this fortune cookie:

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Actually, I lied. I received an email from a young gentleman named Jonah. I found him through a cancer blog while researching my rash. He did an MEK trial a few years ago and had the same side effects. We have exchanged some emails about the side effects and today I received this:

“I forgot to add the most important side effect of the MEK for me – I had six full months of disease-free progression! The MEK followed by a B-RAF inhibitor (Zelboraf) has brought me to a point where I am two full years free of treatment and no signs of disease. I know the statistics are sobering (or even terrifying) but that tiny sliver of survivors of advanced cancer is expanding more rapidly now than it has since chemo was first developed. Now that they’ve figured out how to exploit genetic weaknesses of the cancer cell itself, it’s a whole new frontier. It’s strange to say, but you totally picked a great time to get cancer. :)” 

This is the second time I have heard a first hand account of MEK working. If it worked on them, why not me? Let’s hope that MGH gives me a progress report soon.

End rant.

 

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Swedish Orange?

The past week has been a bit taxing on me so I didn’t write about my first day of chemo at Mass General like I intended to. The highlights are featured in the “day in the life of cancer” segment below. This will give you the gist of my day and treatment regimen:

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After a 1 hour and 35 minute commute into Boston in rush hour traffic. A bit of Mass General rocket fuel is necessary to start your day.

 

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Getting labeled! You are asked to spell and recite your name and birthdate, like, a lot. So for those of you trying to steal my identity, it will only result in you getting stabbed with needles and waiting for hours in a closet sized room.

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Vitals are vital.

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I have had my blood pressure taken every time I have seen a medical professional for the past (almost) 2 years. Every time I ask “so, is that good?” and sure as shit I never remember what numbers constitute good blood pressure.

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This is what an accessed port looks like. Needle pops in, blood comes out, bada bing, bada boom.

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I got a lovely surprise at 7am when homegirl told me she was coming to the hospital. This was also taken at the beginning of the day…not 5 hours later when we were still sitting in the same exam room ready to lose our minds.

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After hours of waiting for pharmacy, the study drug arrived. My supply for the upcoming cycle.

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2 gray opaque pills, 1 gray pill, and 1 swedish orange and gray pill in the morning. 2 grey opaque pills in the evening. Couldn’t the drug company come up with any other colors to differentiate? Like not one other color? They gave it their best effort with swedish orange…

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Oh and I have to meticulously record my doses in his handy palm pilot twice a day. It yells at me if I don’t record when it wants me to.

 

The drug has been more tolerable than traditional chemo infusions but still a pain in the ass. How I feel has been pretty unpredictable. One day I’m normal, the next day I’m doubled over with a stomach ache, the next day my face has broken out with a monster rash that only an angsty 13 year old could relate to. OH and on Friday I fainted at the salon right in the hairdresser’s chair. 911 was called, taken out on a stretcher, taken to the ER for testing. (SIDENOTE: to answer the question an alarming amount of you have asked me- only 1 of the 5 EMT’s were attractive. Sorry to disappoint you ladies, but don’t worry, I’m fine.) Seriously, I really am okay. I had a CT scan of my head, a few blood tests, etc. and it was determined that the fainting was likely unrelated to the trial. Major thanks to Sheila and Emily (my hairdresser) for staying with me for hours in the ER while we waited for some answers.

Friends, I ask you to bear with me as I try to acclimate myself to these drugs. I’m currently not drinking (to be kind of my already taxed liver), I have to limit sun exposure (due to the drugs that are treating my rash/13 year old acne), and I have to fast 2 hours before and 1 hour after each of the 2 doses of chemo I take a day. It makes for an existence that is not necessarily as spontaneous and fun as I would like to be. I still want to go out, go to the beach, have dinner, etc. but I may have to make adjustments to accommodate how I’m feeling and what is in the best interest of my health at that time. Again, I just ask you to bear with me. I’ll try not to be a giant fun sucker.

As always, thank you to my family, friends, work-family, and everyone that has made sacrifices to help and comfort me.

You know what they say, it takes a village to kick the crap out of cancer…or something like that.

Twas the Night Before Chemo: Take 2

After much anticipation and a few trips back and forth to Boston tomorrow is the ACTUAL day that I will start my chemo trial. The format of the day, as explained to me, should be pretty painless (if you don’t count the needle accessing my chest port).

Arrive at 10am –> vitals & blood draw –> meet Dr. Birrer at 11am –> Take first dose of the study drug –> wait an hour –> EKG –> Home.  Hopefully it will not be much more complicated than that. I can handle that.

It is interesting to think about where I was on December 30, 2012. The night before I started chemo for the first time. I was a ball of nerves, sleepless, emotional, and hopped up on steroids. I imagined that my hair would fall out immediately and that the drugs would tear my flesh apart like an acid burn as it coursed through my veins. I had many expectations and fears that did not come to be. On the flip side I encountered side effects that I did not necessarily expect. Chemotherapy is such a mixed bag.

This time around I am going into the trial with an open mind. I am turning down the volume on the apprehension and anxiety that initially hit me when posed with this opportunity.  I am deliberately using the word opportunity because I have come to accept that this is a gift. I am  being offered the chance to try something completely new that has the potential to revolutionize how women with Ovarian Cancer are treated.

Today, I am okay and quite thankful for it.