➘ᶆ⍶rj⌬riℰ ⍡hℰ mu⍡⍶n⍡ @n0sgrb-blog - Tumblr Blog

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A pattern seems to be emerging - I have to apologize again for the ridiculous gap between my posts.

Since my last post I kind of let myself slip emotionally. I let the weight of the December 22 MRI really bare down on me and I fell into somewhat of a depression. Despite my doctors being incredibly optimistic, the MRI would tell me how my radiation treatment went and where I’m at in my recovery. There was a legitimate chance that I would find out that the treatment didn’t go well / that I would need to be admitted to the hospital / that I needed more radiation / that I was dying and that scared the shit out of me. I know I’ve said that I’m not afraid to die - I think that’s still true, but I went into a panic because there is SO MUCH I want to do. Death is not going to fit into my schedule right now. Nope.

As I have told some of you, the MRI yielded positive results!! My (incredible) radiologist hasn’t studied it yet, but my chemo doctor (also incredible) pulled up the scans and told me some good stuff(!): 1. My brain is scarring nicely. 2. There is no new growth on that goddamn tumor. 3. I’m in better shape than they were expecting me to be. 4. I’m on track and looking good to start my rounds of chemo (probably starting January 1st or 2nd). He also told me that the hardest part of my treatment is OVER and that I should be on the up & up from here. I’m still going to have to have MRIs every two months to monitor the cancer site, but I think the next ones will be much more relaxed. It’s huge that my brain took to the radiation so well - that was the main thing I needed to hear to feel better about my situation. And I did! I’m feeling like I’m back to my fearless, warrior self mentally.

Another update - I am physically feeling so much better than when my radiation first ended! I HAVE ENERGY AGAIN! I have moved into my brother’s St. Paul house (LOOKING FOR ROOMMATES HIT ME UP), I’ve been running errands and successfully correcting my circadian rhythms. I don’t need pot to stay awake or feel normal. I’ve yet to get my diet back on track - I’m so picky and lazy about preparing food but I think maybe that’s just something I have to get over (lol hooray for normal people problems). I’ve also been *socializing* a bit outside of the house! Almost forgot what that felt like. ha. I really haven’t been in many crowds just bc I want to stay healthy but I’m getting out which is wonderful.

I even managed to fly down to Texas for Molly’s graduation!!!! It was absolutely amazing to meet her friends (shouts to Natalie Lauren Emma and Evan) and watch her walk across the stage. I’m so proud of her. She is a serious badass and already has a great job & apartment lined up; both downtown Minneapolis. Ask her about it, she’s amazing! I could brag about her for like 10 hours. Same with Walker, haha.

Anyway, my parents and siblings have been the at core of my strength. Of course, they’re accompanied by everyone who checks in with me and loves me and shows me how loved I am. I really am so loved, and I believe realizing that is the biggest silver lining of getting cancer.

By the way if you want to check out my doctas, my radiologist is Anita Mahajan, M.D. and my chemo dr. is Sani H. Kizilbash, M.D., M.P.H. (they’re impressive people google them seriously).

HAPPY HOLIDAYS <3

#anaplasticastrocytoma #astrocytoma #Cancer #American Cancer Society #braincancer #fuckcancer #warrior #happy

anthony-samaniego

jodeeeart

….. please.

Hello to all of my favorite people and loves! I know it’s been a while since I last gave a thorough life update about how things are going. Sorry about that! Let’s get into it.

Radiation is OVER!!!! I don’t have to take chemo either. I have a month break to heal up and prep for the next stages of treatment (6 round of chemo, I’ll explain more later). Healing from radiation is a lot harder than I thought it would be. I am exhausted. I really wasn’t expecting it to be this hard because of how quickly I recovered from the brain surgery.

My daily routine: I wake up, take my medications, smoke a bowl (I feel terrible if I don’t smoke marijuana I’m not even kidding it’s crazy how much it helps). Then I try to find something quiet to do like draw or write or watch a movie. I stay awake as long as I can (doesn’t last long, lol) and then I take a nap. sometimes it’s 2 hours, sometimes it’s 5. I’ve been walking on my parents’ elliptical machine to keep my blood moving. I kind of do the same thing twice a day (wake, bake, activity, fall asleep). Surprisingly, my sleep at night is not impacted whatsoever. I used to have some issues sleeping but I’ve been sleeping better than I ever have - I guess sleep is my body’s way of trying to heal. It kind of makes me feel shitty that all I’m doing is basically nothing all day and yet I’m still so sleeeeepy. Like I cannot catch up on sleep. I can’t even fathom a social interaction outside of my parents’ house right now. It’s like the ultimate crash. I thought I would have more energy by now. Waiting on that! Very excited to have that to look forward to in the near future!!

Medical update: I have a month break right now, and then I will go into six cycles of chemo. Each cycle is 28 days, and I take oral chemo (Temozolomide) for 5 of those days. The chemo that I was taking during radiation was “50%” and then my chemo team will up the dose to work me to “100%” doses by the second or third cycle, depending on how things go. My post treatment MRI is on December 22. Fingers crossed for good news.

Trying to figure out what I’m going to do after treatment. Lots of options. More on that when I have an inkling, haha.

I’m moving into my brother’s house in St Paul this week!!! Prob will be there for like 6 - 9 months? ALL OF THE FRIENDS NEAR AND FAR COME VISIT PLZZZZZ * also I will be able to visit some of you at some point here

I love all of you. Thank you for keeping up with me. I believe that you are the ones holding my up right now and I am grateful to have such a strong network of relationships that I can rely on right now. Shouts to my mom’s side of the family who made me the best quilt ever - I love this thing

#selfie #me

shades on my eyes nothin' on my mind

Jason Lawlor

Close to the end! lots of feels

I realize that my updates have slowed down - sorry about that! Hopefully this post gives you a good idea of where I’m at.

I’m in the middle of week 5(of 6)!!!!! When you’re done with radiation, it’s tradition that you ring a bell on the way out of the clinic. I am so excited to ring that damn bell. They did push back my last day because the hospital is closed on Thanksgiving and I need a certain number of radiation sessions. So my last day of radiation is Monday, November 27. Cannot come soon enough.

Yesterday was a lot of appointments: I had radiation, a care provider visit, and a social worker follow up. Radiation was fine but I’m very frequently exhausted and I literally fell asleep during radiation so that was a little disorienting (admittedly kind of funny). During my care provider visit we went through my list of medications and coordinated all of that. And then my appointment with the social worker was almost like a therapy session. We talked about the logistics of my future considering the fact that I need a lot of MRIs in the near future. I also learned that most brain patients similar to me only do 5 weeks of radiation SO that was weird to hear. I WISH I ONLY HAD 5 WEEKS. She also told me about this awesome place further north in MN that has polar bears!!! I must go when treatment is over.

I’m going to be doing my 6 rounds of chemo (which start 28 days after nov 17) in St Paul, and then I’m going to launch from there when this is over. I might go back to Chicago, or maybe I’ll make a random move and nanny for a year and then go to grad school, or maybe I’ll just go straight to grad school. We’ll see which direction I feel pulled in. I like not knowing! I can’t wait for my life to be unpredictable again. I think that’s what’s been frustrating me recently - I am in such a strict routine and I have so many rules that it kind of lowers the level of spontaneity in my life. I also realize that I’m extremely lucky with how my body is handling this - I don’t feel terrible every day, my chemo is totally fine, I’m just sleepy! I feel that i’m a very lucky cancer patient in that way. I literally haven’t even really lost weight since this all started! Kind of crazy. Also have not thrown up still. All hail Temozolomide.

I feel ready to gooooo after maybe a week of sleeping to recover hahaha

Love to ALL OF YOU and thank you to my family and friends who have come to visit and spend time with me. It helps me so much to have you around me. Special shouts to allie allison aaron and cory ali megan haddon &jo and obviously my SISTER AND BROTHER MOM AND DAD my fucking home team is the best how did i land with them? Idk <3

Also thank you for just checking in with me via text or call! The constant support from afar is very much appreciated. I love you.

i am so happy to be done with week 4 of radiation

oh my my

oh hell yes

2 weeks to go

+Allie and Allison are here this weekend!