Tag Archives: Young Adult Cancer

Chemo Fail

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Dear Carboplatin,

It’s not you, it’s me. Actually it’s mostly you at this point. I mean, you’re a great chemo and all- don’t get me wrong. You don’t make me that sick. You only come around every three weeks so you’re not clingy. We’ve had some really mediocre times together. But alas we need to break up. We should see other chemo. I wish you the best but…

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Love always,

Your Platinum Reactive Ex

Ok glad we got that out of the way. I hope Carbo didn’t take the breakup too hard.

Yesterday I was treated in the main hospital oncology floor with the scheduled Taxol/Carboplatin desensitization chemo. Due to the allergic reaction that I had to Carbo a few weeks ago, we had decided to try it again under careful supervision and a painfully slow drip. All in all I was there for about nine hours.

To be honest I had slight reservations about being treated on the 4th floor of the main hospital. Inpatient oncology is where I essentially lived for most of the summer and my memories are not the most pleasant. I didn’t know if it would trigger me emotionally but luckily I did just fine. I’m guessing I was okay because I have positive connections with the nurses that I would be seeing. That went a long way. I mean, if anyone from WIH is reading this and knows Alicia, say no more. You can’t possibly frown with her around. She’s a damn good nurse, keeps it 100% with everyone, has a mouth like a truck driver, and a sense of humor to match. She wasn’t assigned to me but came by throughout the day to check in which I was grateful for.

I was happy to see that Lil’ Kim was assigned to me for the day. I knew immediately that I would be in good hands.

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So this is how a de-sense works…

Based on some crazy math formula that I made Kim explain to me in detail, that I now do not remember in the least, they figure out the quantity and rate of Carbo to administer over the course of six hours. It has something to do with your weight and I think the number 140 was in there somewhere….carry the 2? I don’t know. The extent of my math at work is making sure I can add up 122 credits and calculate GPA when needed. I’ll leave this one to the experts. In any case, how the chemo is administered is incredibly strategic as to slowly introduce the drug to your body in hopes that the smaller amounts at reduced rates will prevent a reaction. They also take your vital signs every 15 minutes.

Unfortunately going into my LAST bag of Carbo I reacted. Same as last time. I felt a little warm but other than that I felt fine. I turned blotchy and red all over my face, neck, chest, back, arms and hands.

This first picture^ was when I decided to see what I actually looked like because I didn’t know last time. It’s not the clearest of pictures but I’m pretty red (except for my cheeks for some reason? Reverse blush?)

Per protocol they immediately stopped the chemo, pushed Benadryl and gave me more steroids. This reversed the reaction and eventually I was back to my normal pasty-pale self.

I am fortunate that the reaction wasn’t terribly severe. Although,when they pushed the Benadryl I had a strange tickle in the back of my throat and momentary trouble breathing. It resolved itself within a minute or so but was a bit scary at the time. I don’t think this had to do with Carbo at all because it happened almost instantly when the Benadryl was pushed it. I’m guessing it was a response to how quickly the Benadryl entered my system.

Sheila got in contact with Dr. Robison and it was begrudgingly decided that we needed to be done with Carbo. I have heard the term “platinum resistant” before so I asked Betsy if that is what I was now due to this reaction. She kindly explained the following terminology to me that cleared things up:

Platinum Resistant = When the cancer is no longer responsive to platinum based chemo (such as Carbo).

Platinum Reactive =When the cancer IS responsive to platinum based chemo but your body rejects it. Hence, allergic reaction.

So I would fall into the latter category. It’s not that the chemo isn’t working, it’s just that my body is giving it a hard NO. We need to listen to what my body is telling me and move on to something different.

As of this moment I am not sure what the next steps are or how soon we will know what the next treatment plan will be. I’m guessing within the next 2-3 weeks we will have a better idea. I’ve been experiencing some shortness of breath lately so we have a chest x-ray planned for next week. I’m unsure if Dr. Robison will want a CT scan but again, we will know more soon.

So, despite having a long and disappointing day it ended on a side-splittingly hilarious note because Cory, Sheila, and I went to see the comedian Tig Notaro in Providence at the Columbus theatre. She had us laughing so hard the entire time- I was in tears. It was just what I needed.

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If you ever have the chance to catch her stand up, please do. Also- she’s a cancer survivor and her book is amazing so check that out as well if feel so inclined.

That’s all I have for now, but I’ll keep you posted as details about a new treatment plan unfold.

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Swimming

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I’ve been listening to an awful lot of Jack’s Mannequin lately. Singer, Andrew McMahon, was a teenhood idol of mine (Something Corporate anyone?). I was fortunate to see him honored at the 2014 Stupid Cancer conference in Las Vegas this past April. Andrew is not only a soulful artist but has thrived through a cancer battle of his own. It is no surprise that his music resonates even more with me now.

It is likely that I have listened to (and cried to) this song at least 100 times in the last week. It serves as a reminder to keep going despite the obstacles working against you.

Go ahead, take a listen, I’ll wait…

Here is where I get real with y’all. I’m swimming and swimming and goddamn the current is fierce.

I generally look normal, I’m working full time, and I’m social, right? Though I do not feel defeated, beneath the surface I am worn down to my core. The trial is physically so taxing and isolating. What’s worse is that there is no defined ending to keep my spirit afloat. Thank goodness I made an internet friend from Belgium on the same trial because there is literally only ONE person on the earth that can resonate exactly with what this is like (whattup again Trudie!).

On Tuesday I had my check up in Boston. I’ve been putting off writing about it until today because I am still processing. It wasn’t the worst news but it wasn’t the best either. My CT scan showed zero progress. It is exactly the same as it was in November. The exceptions are that the fluid-filled cysts(?) in my abdomen are slightly bigger (my doctors have no idea what they are or why they’re there). Additionally, the radiologists noted a thickening on parts of my colon and the eye doctor found trace amounts of fluid behind my retinas.

All in all this isn’t the worst news because the tumors aren’t growing so that means the drug is still kind of doing its job.

The disappointment comes from seeing no forward progress in light of all of the physical side effects that have been dragging me down. I could more easily push through the fatigue and vomitting and stomach aches and other bullshit if I was still crushing these tumors. But this time I didn’t and it was disappointing. For the umpteenth time, my medical group consoled me as I cried in the exam room (there has GOT to be a market for human tears. Please for the love of God, someone pay me for a tear donation! I’m a cash cow!).

So anyway, the doctors let me take a two week chemocation and plan to dose-reduce me when I am back on drug. I am also scheduled to have a consult with a GI in Providence as a precaution for my colon. So that’s that for now.

Generally speaking, I’m pleased that there has been no growth but the other part of me is like what the eff universe?! Cue Hulk Smash…

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After the visit, I did some soul searching. My quality of living has been disturbed and I know that I have the ability to return to a better physical and emotional space.

Work has generally been fine because the people I work with are incredibly remarkable human beings and they support me every damn day. That being said I have felt so sick and fatigued that I have let some other key areas of my life suffer:

1.) I am not eating well. By the time I get home from work all of the energy I mustered up is spent. I’ve reached my limit and I don’t eat in a way that nurtures my vessel. Paired with a poor appetite, it has not made for a situation where I am using food as medicine. A bowl of rice crispies sure as hell isn’t going to reduce the inflammation in my body or give me energy.

(***SIDENOTE: Thank you to my cousin Cris for juicing for me all weekend when we were in Florida! My body thanks you!!!)

I need nutritious food that will not be rejected by my sad chemo tummy. 

2.) I’m not maintaining my beautiful apartment as I would like to. Dishes will sit in the sink, floors will go unswept, clothes will sit in my hamper for days on end. I’ve never claimed to be a neat freak, I’m far from it. A small mess doesn’t bother me but when it accumulates it does. I’m again so exhausted physically AND emotionally that I can’t get myself to do simple tasks like this.

This is the negative self-talk that goes through my head: “There is only one of me for goodness sakes! How effing hard is it to wash a pan??? Whatever I don’t have it in me, I’ll do it tomorrow” Then I stick my head in the sand, pretend not to feel bad about my negligence, wrap myself up in a blanket and call it a day.

I need to maintain the harmonious environment that I have created by keeping my space clean and uncluttered.

3.) My emotional health has been fragile. I’m too hard on myself often. I compare my abilities to others that are not facing the same types of obstacles and expect too much of myself. I put on a facade that everything is just fine when deep down it’s really, really, hard. Aside from doing more yoga, exploring creative outlets, and talking to my social worker there is something else that will aid my emotional health and because I am stubborn, I rarely do it. I don’t ask for help enough.

I need to ask for help. 

If you are my friend, you may be thinking to yourself “well if she just asked I would totally help her!”

This is what I need you to know: 

1.) Sometimes I don’t know what I need. I have made it a point to prioritize and clarify some of my needs above for this reason.

2.) Asking for help makes me sometimes feel exposed and vulnerable.

3.) Asking for help with things like meals and cleaning makes me feel guilty that I am monopolizing time that you could be using for your own life. I cannot think of a single friend that would make me feel like a burden, but again, negative self-talk is a nasty bugger.

4.) Because I work full time and maintain a social life (not out clubbing but still out and about) I am afraid that I will be perceived as a fraud if I ask for help. It’s not obvious to others that my energy is depleted at the end of the day because I put on too good of a front sometimes. I would never want anyone mistake me for abusing their kindness.

5.) I love you, care for you, and don’t want to bring you down or make you worry.

Asking for the help of people that you love and care about is one of the hardest life lessons I’ve encountered. Giving up control and opening up my world in this way is hard. You may think nothing of picking up some groceries for me but I OVERTHINK it.

I have had many wonderful talks with my momma and boyfriend about accepting help. They have done a great job of helping me see from their lens that this disease makes them feel helpless too. What is in their realm of control is being able to assist with some of the things that I’m too worn out to do all the time. In a situation where all they can do is watch from the sidelines, it is important that I allow them to be active in this process in the ways that they do have control.

Please know that this is really hard for me but I am going to make an honest effort to be more transparent and do more asking (within reason, obviously).

My last note is a giant, enormous, thank-you to my cousins: Dave, Cris, Mason & Alex. They graciously shared their beautiful home with Cory and I in Florida last week. The trip was therapeutic and full of relaxation, laughter, and love. I have but a wee little family but boy are they amazing.

Now to come full circle, back to Jack:

“You’ve got to swim and swim when it hurts. The whole world is watching, you haven’t come this far to fall off the earth”-Jack’s Mannequin