Its been a bit since I've blogged, because I realize I only blog when I'm feeling desperate, in pain, alone or scared....which in turn scares the people who read it. And honestly, how many times can you blog that you're in pain, nauseated and everyday pretty much sucks? It gets old.
Which brings me to today...I'm so super over this cancer bullshit. I am ready to disown my body. Today, I'm nauseated and having digestive issues, so eating is very challenging and I'm so frustrated. Earlier this week, I had two doctor appointments and an echo/EKG. As I laid having the echo/EKG, I could literally feel the disconnect between my brain and my body. I just space out until its over.
This is not uncommon for me--disowning my body, leaving it to its own devices when I'm not feeling well or I'm forced to do something I don't want to do.
And I'm angry. I'm so fucking angry. I want to beat the cancer out of my body. I scream silently at my tumors, telling them to get out of my body. I want it back. Its my body.
I took care of this body for nearly 30 years. Sometimes I tortured it with cheap vodka from the bottom shelf of the liquor store and 3am pizza, but it was resilient. My body and I worked hard together to loose weight, gain muscle, lift heavy weights, run long races. My body didn't give up even when my mind did.
I feel like my body has betrayed me.
And now, my mind has to be strong for my body and its a real struggle. Whenever I have my blood drawn, another scan, when I'm waiting on a doctor's visit, I feel my head disconnecting from my body. Its a very strange, out of body experience that is difficult to describe. I feel totally out of control with this cancer, and we all know that Type A people like me love control.
When I wake up in the morning, I try to pick 1-3 things that I can accomplish in a day to prove that I am still in charge of my body. Today, I wanted to write thank you notes, do laundry and refill prescriptions. It is now 2:30pm and I have only refilled my meds, because I literally have to do that. Nothing else is done because I feel like shit and I have to keep running to the bathroom, so I also cannot leave the house basically. Once again, I am feeling a complete lack of control and disconnect from my body. Why can't it just cooperate for one day?
And don't even get me started on how ugly I feel. Skinny body, protruding abdomen. I look disgusting. None of my clothing fits right. Its awfully rude of my body to look this way after I spend years padding it with muscle and conditioning it to do awesome things. I was recently looking for a new gown for a formal wedding in August because I thought maybe a new dress would help me feel more confident. As it turns out, all of the dress fit terribly because of my ridiculous abdomen. I cried in the dressing room for the first time in a very long time. This was a time where my brain could not disconnect from my body. Cancer was very real in that moment.
And so I'm trying to find ways to stay in control, stay connected to my body, to find distractions, to use my hands and my mind to do something meaningful everyday, no matter how horrible I feel. I fail at it most of the time, but at least I've found a couple things. My hair was totally fried from my chemo meds so I decided to take control of my hair, since it was making me feel uglier than usual. I walked into a salon and told them to buzz my hair off and dye it pink because why not? I can do whatever I want. Its my life, my hair and I'm in control.
A cat cafe recently opened in Tempe, where you can go and play with kittens that aren't quite ready for adoption but are absolutely the cutest things ever that need love and affection. My cats are basically over my extra affections 24/7, so every time I really feel horrible, I head over there to snuggle tiny kitties. In fact, the other day, I met a siamese kitten who *hopefully* will be joining our casa de Morales next week, which is exciting. This is one of the few joys I have in my life right now and it always makes me feel better overall.
So, that's that. I'm frustrated and I feel out of control. I feel out of touch with my body. Everyday is hard, but I'm not giving up.
FYI-- Medical updates below.
Medical Updates: There aren't many. Its really more like a waiting game until my next PET scan. That said, I did get accepted into the NIH GIST clinic so I will be in DC for the first week of July and my case will be presented to all of the leading doctors and surgeons who specialize in pediatric GIST cases for discussion. The preliminary tests they do will also show if I'm eligible for any clinical trials in the future.
Otherwise, we continue to research and try to understand how this happened and how we can improve my quality of life in any way. I did start attending a support group for cancer patients weekly and some of the other programs they offer (mediation, zumba lite, coloring as therapy, etc.). I don't know if it helps, but I'm going to try, because I don't know what else to do.
Which brings me to today...I'm so super over this cancer bullshit. I am ready to disown my body. Today, I'm nauseated and having digestive issues, so eating is very challenging and I'm so frustrated. Earlier this week, I had two doctor appointments and an echo/EKG. As I laid having the echo/EKG, I could literally feel the disconnect between my brain and my body. I just space out until its over.
This is not uncommon for me--disowning my body, leaving it to its own devices when I'm not feeling well or I'm forced to do something I don't want to do.
And I'm angry. I'm so fucking angry. I want to beat the cancer out of my body. I scream silently at my tumors, telling them to get out of my body. I want it back. Its my body.
I took care of this body for nearly 30 years. Sometimes I tortured it with cheap vodka from the bottom shelf of the liquor store and 3am pizza, but it was resilient. My body and I worked hard together to loose weight, gain muscle, lift heavy weights, run long races. My body didn't give up even when my mind did.
I feel like my body has betrayed me.
And now, my mind has to be strong for my body and its a real struggle. Whenever I have my blood drawn, another scan, when I'm waiting on a doctor's visit, I feel my head disconnecting from my body. Its a very strange, out of body experience that is difficult to describe. I feel totally out of control with this cancer, and we all know that Type A people like me love control.
When I wake up in the morning, I try to pick 1-3 things that I can accomplish in a day to prove that I am still in charge of my body. Today, I wanted to write thank you notes, do laundry and refill prescriptions. It is now 2:30pm and I have only refilled my meds, because I literally have to do that. Nothing else is done because I feel like shit and I have to keep running to the bathroom, so I also cannot leave the house basically. Once again, I am feeling a complete lack of control and disconnect from my body. Why can't it just cooperate for one day?
And don't even get me started on how ugly I feel. Skinny body, protruding abdomen. I look disgusting. None of my clothing fits right. Its awfully rude of my body to look this way after I spend years padding it with muscle and conditioning it to do awesome things. I was recently looking for a new gown for a formal wedding in August because I thought maybe a new dress would help me feel more confident. As it turns out, all of the dress fit terribly because of my ridiculous abdomen. I cried in the dressing room for the first time in a very long time. This was a time where my brain could not disconnect from my body. Cancer was very real in that moment.
And so I'm trying to find ways to stay in control, stay connected to my body, to find distractions, to use my hands and my mind to do something meaningful everyday, no matter how horrible I feel. I fail at it most of the time, but at least I've found a couple things. My hair was totally fried from my chemo meds so I decided to take control of my hair, since it was making me feel uglier than usual. I walked into a salon and told them to buzz my hair off and dye it pink because why not? I can do whatever I want. Its my life, my hair and I'm in control.
A cat cafe recently opened in Tempe, where you can go and play with kittens that aren't quite ready for adoption but are absolutely the cutest things ever that need love and affection. My cats are basically over my extra affections 24/7, so every time I really feel horrible, I head over there to snuggle tiny kitties. In fact, the other day, I met a siamese kitten who *hopefully* will be joining our casa de Morales next week, which is exciting. This is one of the few joys I have in my life right now and it always makes me feel better overall.
So, that's that. I'm frustrated and I feel out of control. I feel out of touch with my body. Everyday is hard, but I'm not giving up.
FYI-- Medical updates below.
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| Aphrodite, 4 months old, ready to come home to Casa de Morales! |
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| Holding a 3 week old kitten with his sleepy brother in the background. |
Medical Updates: There aren't many. Its really more like a waiting game until my next PET scan. That said, I did get accepted into the NIH GIST clinic so I will be in DC for the first week of July and my case will be presented to all of the leading doctors and surgeons who specialize in pediatric GIST cases for discussion. The preliminary tests they do will also show if I'm eligible for any clinical trials in the future.
Otherwise, we continue to research and try to understand how this happened and how we can improve my quality of life in any way. I did start attending a support group for cancer patients weekly and some of the other programs they offer (mediation, zumba lite, coloring as therapy, etc.). I don't know if it helps, but I'm going to try, because I don't know what else to do.
Nikki, I read your blog and follow your posts each time trying to find the right words to say. You are someone I have always admired. As ridiculous as it sounds, I remember thinking I was lucky in high school because we got along well after I thought you could less about my existence. Yes, we're almost 30 and I referenced good old Billy Fremd. I envied your confidence and strength as we said goodbye to Palatine and knew that of anyone, you would change the world. Thank for sharing your journey and being real about the struggle. Regardless of how you feel, I will always think of you as the strong and beautiful person that you. Praying for your health and that all your kitten friends find happy homes ❤️
ReplyDeleteLove your new pink hair and the cute little critters! I am sure it is great therapy for both you and the kittens when you to go to the cat cafe.
ReplyDeleteHang in there - we all miss you at the Society. - Patty
Hearing your pain, frustration and angst, Nikki. Thanks for sharing your experiences; all of them.
ReplyDeleteSaw Wonder Woman last night. I've wondered for years why the common response to dis-ease is to fight it, battle it, etc. WW's message of love prevailing over war is an interesting one. Aphrodite may provide guidance and assistance (cute pic). Sending love, courage and strength to you.