#chemosucks

I’d like to put out a warning that this post has to to with my vagina and butthole and a little bit of sex (not butthole sex, I see how that could be misleading) but it’s all completely medical and the point of this blog is to show you what I’m going through and hopefully help other people dealing with the same thing so I’m putting it all out there with zero regrets. But I guess if you’re my dad, maybe skip this one?

I didn’t realize that its been over a month since I last wrote something on here.  So much has happened in the past month but yet it is hard to believe that its been that long already.  I spoke to the other specialist doctors and really the only route I really could take was to get chemo again.  I wanted to just do nothing and just enjoy the last years doing whatever.  The doctor estimated that I would get 1-2 years but unfortunately I would not have good quality of life and be suffering because my tumors would grow and cause another block blockage for my bowels and my left kidney.  I don’t want to spend my years suffering so then I just wanted to get the tumors removed but then that would guarantee a bag for my left kidney and a bag for my bowels plus need mesh replacement in my vaginal area.  I am not trying to have any bags or anything outside and/or permanent so that wasn’t an option either.  So I needed to go the chemo route.. The plan with getting chemo is that it will shrink the tumors a good amount to then be able to remove it surgically.  This way, they should be able to keep my ureter for my left kidney connected to my bladder.  As for the bowels.. if it shrinks a lot there is a teeny tiny chance that they will be able to reconnect it again.. its a super tiny chance because there isn’t much left to work with but its better than nothing.  I am already trying to come to terms that I will end up with a colostomy bag since my luck sucks and I am tired of getting my hopes up for nothing. 

Next comes getting a powerport put back in.. They still used the smallest one but this one for some reason actually shows/sticks out on me.  Last time you couldnt tell I had one unless you really looked and touched.  Now you can see the lump which means that no nurses should have any issues accessing my port this time.  Really the only good thing having it show but it is definitely a plus.  Before I had to have this one specific nurse access it and a couple of other nurses were able to get it.  I had gotten poked multiple times because they missed it and had to do it all over it with the old one which is not fun. 

My name is Natalie. I am new to tumblr. I heard this can be a good place to find community and talk to people with similar interests. I would love any Taylor Swift suggestions of pages to follow or places to find the fandom haha I also have Hodgkin lymphoma and I’m about to get a stem cell transplant. If you are a young adult with cancer I would love to connect. It has been hard to meet other young people with cancer during Covid. I’d love to hear your journey!

Pine needle basket.

Chemo and Summer heat conspire to keep me away from all the really interesting projects in the workshop or outside, so I scratch the creative itch however I can.

Last weekend I went for a 9-mile bike ride to downtown Boston and back.  I was admittedly nervous and skeptical about this ride beforehand for a couple of reasons.  First, it has been years since I rode a bike, and I know there’s that whole expression “It’s like riding a bike” but I’m not sure that expression is all that accurate.  Second, I have never ridden a bike in Boston.  Third, I get winded these days going up and down my stairs, so I was not sure I quite “had it in me.”  But, my whole household was going, it was a beautiful day, and I had been promising myself I would make an effort to be more active.  So off we went.  Oh, and there was a promise of breakfast sandwiches and coffee and donuts once we made it downtown- nobody could say no to that.

The beginning of the ride was rocky.  The original bike I borrowed was just a little too tall for me, and because of that I felt incredibly unsteady.  I traded bikes with one of my roommates and that bike ended up being a better fit for me- a few loops around a parking lot and I thought, “Hey, it really is like riding a bike.” With my confidence reasserted, we hit the bike path.  

The bike ride was, overall, beautiful.  I did find myself getting winded and had to stop a couple of times.  My roommates had been prepared to take it easy with me, and were very supportive.  Eventually we made it the 4.5 miles downtown and I felt so incredibly proud for conquering my first time back on a bike and first time biking downtown, all while dealing with the fatigue, shortness of breath and other goodies that come with my chemo treatment.  I felt empowered and heartened, which made me feel optimistic about the ride back home.

That optimism was short lived; almost immediately after we took off it became apparent that my body simply could not handle it.  I told myself we just had to get out of downtown and back on the bike trail and then I would ask to stop.  We made it and I signaled everyone for a quick break.  I thought maybe if I caught my breath and had some water it would be okay.  One of our bike squad members offered for me to try their bike to see if that made a difference.  I hopped on bikes a block or so, and then hopped off almost immediately- it just wasn’t going to work.  As I hopped off, right after we had crossed an intersection, I heard two men yelling from a car about some girl having a fat ass, or something to that effect.  Regardless of whether they were talking about me or someone else who had crossed the street with us, that was the final kick for me.  Any experienced fat girl understands that you will always think those comments are about you, even when they are not.  (Disclaimer: I do not mean “fat” as something negative, and I am definitely not looking for people to tell me I’m not fat, I’m simply stating a fact about my body).  Anyways, it was at this point I felt the tears of frustration welling up and knew my ride was done.  I told the crew I couldn’t go any further and would walk while they biked on.

There is a certain trauma that comes with being fat and exercising.  It’s almost like you never want someone to see you fail at any kind of physical activity because it feels like you're reinforcing the stereotype, like, oh of course the fat girl can’t finish the bike ride.  My roommate had offered, very kindly, to come back and pick me up in the car.  That was an indignancy I couldn’t bear- it was one thing to fail to finish the ride; it was another to have to be driven home.  No, I said stubbornly, I would walk my bike home.  Caleb of course insisted on walking his bike with me.  

As we walked our bikes I became more and more upset.  Part of it was the embarrassment of being a fat girl walking a bike home.  I almost want to scream at passers by “It’s not because I’m fat- I have cancer!” But another, bigger part of it was the reality of admitting to myself that chemo had changed my body, and it simply wasn’t up to the tasks it might normally have been.  Eventually I became upset enough that I had to stop and let myself have a small breakdown.  Caleb hugged me while I cried and tried to keep me in perspective. “You’re going through chemo” he reminded me, and tried to help me realize that having made it as far as I had was a feat in itself.  He walked across the street to grab me tissues and a gatorade so I could cry, rehydrate, cry, and rehydrate some more. 

****

Here’s the thing about chemo- it has made me feel incredibly betrayed by my body.  I have always been overweight, since my teenage years or even earlier.  Different versions of overweight, but overweight.  That was just the way it was, and I had reached a certain level of acceptance of that.  But I had always prided myself on how active I could be.  Pre-pandemic I could run 4-5 miles no problem.  I would hit the gym three times a week, I would get the steps in.  I was still fat, I was active, and I felt good about myself.  

Because of chemo, I am now fat, inactive, and feel terrible all the time.  I get winded walking up stairs, I am exhausted by my five minute walk from the T to my office downtown, and I find a short walk will tire me out for an afternoon.  And it’s not just my stamina.  It is absolutely everything.

The skin around my mouth had begun peeling and reddening.  My cuticles are dry and peeling and hurt.  My hands and feet are dry and cracked.  My arms are bruised up and down from frequent IVs. I oftentimes cannot open my medicine bottles or jars without help.  My hair, of course, is completely gone, not just on my head, but my nostrils too, leaving me with an almost constant runny nose.  My eyebrows are thinning, along with my eyelashes, and I pray to whoever is listening to please not take those away from me too.  My hands shake, and have turned dark brown from the cytoxan (which thankfully I am done with).  My memory is terrible.  I am breaking out like I’m back and middle school. My joints hurt, my muscles ache, despite me doing nothing all day. AND I get hot flashes now! Oh and I am hungry all the time.  Honestly ALL THE TIME.  

Here’s the thing- my body and I have been in a constant battle since I was 12 years old.  It took me 10-15 years to learn to love my body for what it was, with the understanding I was never going to have the same body as my friends, was never going to fit their clothes, and was never going to be the traditional idea of “in shape.”  But we had come to truce, my body and I.  I had found acceptance, and even joy in my body.  I had even got to a point where I wore a bikini for the first time since I was a child the summer before the pandemic and it felt amazing, liberating.  I followed plus size models like Ashley Graham and Tess Holiday on Instagram and thought heck yeah, if they can do it so can I.  

My cancer treatment has taken the pride I had in my body and the control I had over my activity levels and appearance and destroyed every last piece of it.  When I was having my worst struggles with my body in college, therapists used to ask me to list my favorite things about my appearance.  My top two on that list were always the same: 1) My hair and 2) My boobs.  Well, cancer has taken one of those things from me already and will have taken the other by the end of this summer.  Like I said, my body has betrayed me now in more ways that I can count.  And that betrayal is likely not going to end for a long time.  Honestly not until there is no cancer in my body any more.  Because let’s be real- that’s the biggest betrayal of all.

Whenever I catch myself in the mirror these days it has the potential to ruin my whole day.  There are few outfits that make me feel comfortable and attractive.  My face feels round, rounder without hair to frame it. I try not to look too long, lest I find more things to hate.  I am terrified of upcoming social gatherings, and wonder how on earth will I be able to feel remotely happy about my appearance for them.  

Chemo has reshaped my body in so many ways, some that I am only starting to realize.  It is hard, fitting into this new body and becoming accustomed to it.  It is even harder learning to love it.  Indescribably hard.  I think I can get there but sometimes it’s difficult to see the light at the end of the tunnel.  Moments like the complete few minutes of despair I felt during our bike ride sometimes make that light seem even further.  But it’s important to remember those moments are often fleeting, and can change with a little perspective.  

****

After I cried it out on the bike path, I checked the time and realized we really needed to start heading home.  Caleb had a vaccine appointment to make and I was an hour away from committing murder of some poor bystander out of sheer frustration.  I looked on Google maps and found the walk home would be 48 minutes, probably more pushing a bike and with my sad little chemo lungs.  The bike ride home? 12 minutes.  So back on the bike I went, and it took every muscle in my body to pedal that 12 minutes home.  Fueled by my anger and embarrassment, and the residual tears, we eventually made it all the way home.  

I originally found little pride and satisfaction in our trip.  All I could think about was how I couldn’t bike the whole thing, and about how those guys in the car had yelled, and how much I hated my biking outfit, and how defeated and mortified I was feeling.  

Sometimes perspective takes time, but eventually I found some.  I owe a lot of the perspective to Caleb’s support and encouragement both during and after the bike ride, and to my parents pride and excitement as I was telling them about my biking adventure.  I also owe a lot of it to a nap, a much needed shower, and a new day.  With perspective I rediscovered some of that pride I had lost.  Nine miles there and back?  I did that shit.  And yeah, maybe I didn’t bike the whole thing, but I sure as hell did the whole thing, and did the whole thing while in the midst of chemotherapy treatment.  While in the midst of poisoning my body beyond recognition.  I am a freaking badass. 

And what did I do that evening?  Ate my body weight in sushi because I wanted to.