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…
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