I don’t know what I was expecting anymore. I repeat things so many times, but that doesn’t mean they’re true. There’s a lot of assumption that after you undergo a surgery that you will come out better, stronger, healed even. In some respects this is true, I am certainly stronger. Healed? No, but did my surgical team pull off a Hail Mary? Absolutely.
It has been a terribly long journey so far, three months has passed and I forget each day how difficult the day before was. You just keep chugging along, pushing your body past these insane obstacles you never thought possible. I honestly don’t know where the power comes from, often I am so crippled with pain, and I can truthfully say I’ve surprised myself time and time again by simply facing the day. The mind is an incredible abundance of surprises, so powerful and eager to adapt to each new hurdle. So that’s what I do, each day, I am patient and mindful of each new struggle, and boy do I need a lot of patience!
I have been putting off making any additions to my blog, because when I first started it I was hoping for it to be mostly positive and uplifting. It’s impossible, it would be a lie, and even though I’m still totally fab, it’s not a picnic here everyday. I don’t want to give you the wrong impression, but you see what I want for you to see. I make a pretty picture of myself and share it with the world so that everyone can enjoy the parts that are fun and fabulous. When I have a visitor, do you think I chose my worst time to see somebody? Of course not, I waited until I felt my best so I could enjoy my time with you and not feel like a different person than I was before. Today, I will share a few things that are a little less fun and exciting, but they will be honest and allow a better understanding of my new life, and what’s to come.
Having pheochromocytoma Cancer is never dull, but the surgeries to remove and ‘debulk’ the tumors are far worse in my opinion. The surgical team was top notch, and I just want to squeeze him everytime I see him. I would name him but in respect of privacy until I formally ask for him to be named in my blog, I will continue to call them my super doctors. In return however, I’ve now had my intestines cut and removed, a large part of my diaphragm removed, pieces of my liver, kidney, and my whole adrenal gland. Ever wonder what it feels like to digest food after you have had intestines mangled? How about the diaphragm? I didn’t even think about having one until it felt like someone playing the piano with my exposed nerves, multiplied by 1000 and then round house kicked my back for good measure. My insides hurt, let’s put it this way. I try sometimes just to suck it up, rub some dirt on it that sorta thing… But it’s all consuming and all the pain that is associated with the surgeries, on top of the pain that pheochromocytoma physically causes itself, it is HARD!
So what now? Ah, the famous question.
Well, of course… between all of the harsh realities we force ourselves to accept so we don’t get disappointed when the positive outcomes don’t happen, somewhere in there I did reserve a tiny bit of hope. A hope that would come in the form of…. “We got it all for now, you can rest for a little while”.
Unfortunately no rest for now, that’s why I’ve been avoiding sharing.
I just found out I still have a few confirmed tumors around the liver, around the scary arteries that tie me all together. The good news if we look for the positive, is that before the surgery I was lit up like a christmas tree (my surgeons words) and now I’m a smaller Christmas tree LOL
Our next adventure: MIBG radiation. I’m not an expert, I don’t know a whole lot about it yet, apart from having to be isolated for a while so I don’t spread my radioactivity to others. ME?! In isolation, how rude. I just hope it doesn’t hurt much, I pray it doesn’t hurt much. I was really hoping I would be able to put off this stage for a long time, but it’s all happening very quickly. Last year around this time I was being diagnosed on my twenty fourth birthday, this year for my twenty fifth I’ll be getting doused with radiation. Well f you, October. 😂 Maybe it’ll be later, I’m unsure at this time. They don’t do this type of radiation often here, so special requests and all that jazz. So that’s next, and then we will see how it’s progresssed at that point and how to attack once again.
We are at the hospital almost once a week on average, three and a half hours commute each way, it’s exhausting and has a way of making your already vulnerable emotions lose their shit. Each appointment is new information, and information is power, although it’s powerful… It’s still incredibly hurtful and difficult to process. So we just take this one day at a time, one CT, one MRI, one PET scan, one MIBG, and slowly sort through results literally and figuratively.
I miss normalcy, I miss my career, and I miss relating to my friends. I feel the loneliness every now and again of changing dynamics with people, and just not being able to keep up.
Despite everything, I still laugh everyday. Every single day, I laugh through my tears, I laugh until I’m in tears, and I laugh to keep tears away. So thank you Serge, for being wildly inappropriate at the worst of times, I knew God gave you to me for a reason. To give me everything you have, even if it’s just to get a tiny smile.
So that is our life after surgery, messy, painful, and only more to come. No rest for us quite yet, but we’ve come down a long long way and I’m still just as friggin fabulous, scars and all.
I have a lot of scars, and each one reminds me that I’m alive
Waking up with a tube EVERYWHERE
So so so swollen, this is what liver/kidney/pheochromocytoma surgery looks like. Not so fab
But I’ll never give up ✌️