#tuhfs14

[marcusforst]

A Long Email to Dr. Lorenz (April 20th)

This is the next email that I sent Dr. Lorenz, 8 days later. I sent different forms of this message to all of my professors and Ruth. It contains a lot of my thoughts from the first two weeks of induction in which I was essentially bedridden. Enjoy! _______________________ Dr. Lorenz, Thank you for your message! I was thrilled that you got to meet my dad the other day! I'm feeling excellent today (Monday and Tuesday are my best days because chemo on Wednesday) and the weather is overcast which is really nice on my eyes! Also, I slept for 5 hrs and 45 min straight last night which is practically a new record so I feel like superman! I'm adjusting well to the rehab life! (It took a while but that's okay) Screens are difficult because I get headaches but I am learning to manage. I'm doing a lot of thinking, and I am learning how to cook from my mother and grandmother which is super fun and awesome! Hanging out with my brother is definitely the best part about being home. We play basketball outside pretty much every day which is always a blast (for the time I can stand it) and I've been able to tell him stories about college which is awesome because I missed him a lot. Healthwise, chemo makes me tired--it's like a full body injury--but I'm being well taken care of and I am in excellent spirits. I've been facetiming Lexi and my friends recently which has been wonderful too! They make me happy. I'm getting a lot better physically (cancer wise). My kidneys are completely back to normal which suggests that the tumors there are already gone. My breathing is going back to normal which means that my tumor is shrinking quickly and that the resulting fluid is being removed. I did not have cancer in my spinal fluid or in my bone marrow which is also wonderful news. My blood counts are still relatively high and I still have both hair and an appetite so I have responded well to treatment so far! I spend a lot of time laying down and thinking and resting, but I have gotten a lot more comfortable in my own head. It's a different experience, because I'm typically the person who wants to talk and get to know people and energize a room, but I am learning a lot from it. My time to think has allowed me to digest a lot of the wonderful things that I learned in my first year at college which is very valuable. The cancer has also helped me to confirm what is valuable to me, what makes me happy, and how I want to make an impact on the world around me. So, it is a different experience and a difficult experience, but I am learning a lot and I am happy. Lexi and I are going to thoroughly relearn calc 3, physics and sequences and series (for fun of course) over the summer once I turn a corner. I'm super excited for that! I'm determined to be an expert in all of the above! It has been really nice to realize that I legitimately want to do calculus and physics--even though I have bigger problems to deal with right now. I could probably just take the physics tests and the calculus tests right now and finish them, but I really want to do a thorough job and walk in and out of the test knowing and fully understanding everything. I want to ace those tests. I want to make everyone proud. And I will. So that has been a good realization for me too. As far as the near future and treatment, I have chest chemo on Wednesday (day 15) so that'll tire me out for a few days. I also have a brain mri because they might put a port in my head so that they stop stabbing me in the back (I rate lumbar punctures 0/10 do not recommend). Day 22 I have more chest chemo which is tiring but not bad. Day 29 I have chest and intrathecal (potentially lumbar puncture, potentially via head port) but that is the last day of my induction phase. So that is probably when I'll feel really nasty and be most vulnerable to disease. By this day the tumor should be completely gone (frankly it should be gone around day 22) so we will to a PT scan to see how I am doing. Based off of this scan, we will determine how to move forward. Thank you for all of your support and I hope finals treat you well! Sincerely, Marcus Forst

[marcusforst]

An Email to Dr. Lorenz (April 12th)

A window into my thoughts during the most rough portion of my induction. Enjoy. ______________________________ Dr. Lorenz,

Thanks for your kind message! I hope this message finds you well! I’m sorry I’ve taken so long to respond. I’m doing pretty well after my first 3 rounds of chemo. It is just very weird. I struggle to sit up and I get headaches and back spasms regularly. Mostly I’m just feeling out everything and figuring out what I can and can’t do. My body is doing a great job fighting so I cannot really complain. It is difficult to be productive when I pretty much always have to lie down, but I’m working on it.

There are times where I just want to do homework and my body just can’t. So it is certainly something I am adjusting to, but it has helped me confirm that I want to study calculus and physics because those are the assignments that I most want to do (and are unfortunately are the assignments that are optional).

I was doing a ton of calculus review before I went to the hospital so I hope to start that up again. It is tough to have so much time but not actually be able to do anything. I’m thinking a lot, which I good, but I want to be productive.

[marcusforst]

Thoughts on Yoga and Stretching

I have started doing yoga and stretching daily. Well, I stretch daily and try to do yoga every day. If I cannot do an entire yoga session, I at least work it into my routine. Lets call it a yoga-stretch hybrid. My favorite part of yoga/stretching is meditation. I really enjoy allowing myself to let go, breathe, and I enjoy the challenge of relaxing and allowing myself to think fully in the moment. I am not very good at this, I am not very good at clearing my head, but I enjoy it very much. And it brings me peace.

[marcusforst]

Journal (May 1st) -- Insecurities and stuff

Something I have been struggling with (really I just struggled with it yesterday, today has been pretty good), is the fact that I feel like I can't give anything of value back to my friends. I have always been the person who walks in and lights up the room. I have always tried to make the people around me happy--to bring something valuable into their lives. And right now, I can't do that. And I need other people to light up my day. I need my friends to send me pictures because I miss them. I need them to call me and talk to me because I miss them. I needed to talk and cry to Lexi yesterday because I missed them so badly. And that makes me feel like shit. I don't want to be sad around them. I don't want to make other people sad. I don't want people to be unhappy because of me. But I need them. I need them badly. I just really don't want to lose them because I need them so badly. I don't want to be a burden and a pain and lose them. I don't think I can handle that. And I know this is ridiculous, maybe it is because of Ellie, and the fact that she called me clingy. I just don't want to push people away by being needy. Of course, I'm actually really fucking needy right now so I shouldn't feel bad about it. But it is worrying to me. I may need to start using up my rainy-day stories and jokes and videos. This summer could be really rough. The first two months of fall semester could also be really rough. I am starting to wonder what a real rainy day looks like. Because today was so great, and so excellent, and now I am here--feeling like shit and missing my friends. We'll see how it all goes. I just talked to Lindsay and she helped me feel less bad. Maura too. So yes Corona, I need people. I do. I need people in my life. I need people. But I am comfortable with myself. I am comfortable in my own head and I am happy to be me. And I can't fucking wait to be able to light up the room again. I can't wait to get my powers back. __________________________ [Added] I know, in my soul, that I bring value to my friend's lives and that they love me. It takes a trust and self-confidence to know it. I am lucky that I do.

[marcusforst]

Journal response to a letter from Mrs. Kent (May 1st)

My first and second grade teacher just wrote me a get well soon note. I am having a very difficult time feeling right now. I am very overwhelmed. So I have decided to write. Mostly this is because I can't go and talk to Lexi because she is tired from finals and needs to decompress. I'm glad to be writing. I loved her class. We had such a good group of kids. I always felt like I could do anything in that class. It was the first experience I had ever had with school and I was good! I could read well, and do math well, and I loved being around the other kids. Mrs. Kent was so friendly, and so kind, and she made everyone want to learn. She made learning and school fun and she taught without making you feel like you were doing something wrong. My mom used to come in and do science experiments with our class and I was proud and happy to see her so happy and also to have my friends like her. I remember one time I was supposed to summarize a story that we read (a very basic story) but I didn't know what the word summarize meant. So I made up a new story, using the former one loosely as a guideline. She laughed and was very kind about it and helped me to understand what she was actually looking for. I didn't feel stupid or embarrassed--which is really impressive because I am a crazy perfectionist. I felt her warmth and calming presence and was comfortable learning, even though I had made a mistake. But I knew it wasn't a mistake to her, it was still good. We had these math projects where we would have to add and subtract (by tallying, or by adding or using blocks) and then we would have to explain how we solved each problem. And I used to chose the most difficult option to explain (the memorization of tables) and write it all out, even though I could have just decided to say that I tallied everything up. I wanted to do things the hard way, the right way. I wanted to explain what I was doing in my head and make her proud, even though all the writing made my hand hurt. We used to have this day called pocket day, in which we all wore as many pockets as possible and we had to add up the number of pockets and whomever had the most pockets won. I think we had teams or something. My mom and I made a pocket shirt that had 12 pockets or something ridiculous. It was fantastic. I was probably too competitive. Actually that is hilarious. My mom and I spent time making a shirt with pockets so that I could beat my classmates. Typical Marcus. I wanted to invite her to my graduation party. I wanted to know that I had made her proud. I wanted her to know how much she meant to me, how much she has helped me turn into the person that I have become. How important that start was to me and my education. I wanted to learn, and I have been successful because of that. She helped nurture me and my confidence so that I could become successful. I wanted her to know that she helped make me into the valedictorian, the state orchestra member, the marching band leader and average track athlete. I loved first and second grade so much (I loved 6th grade too). But I didn't ever reach out to her. Or we didn't find her. Something. And now she sent me a card. --------------- "I just wanted to let you know that I was thinking of you. Please take care. Your family will always be special to me. Love, Mrs. Kent. P.S. I am so proud of you. I saw many of your accomplishments on the AG Website through the years. :) " ---------------- And I am so very overwhelmed. Of course I am crying--with the Interstellar music playing in my head. It means the world to me. People are so special. People make a difference. People make feelings and emotions and have energy like nothing else in the world. You can't sit here and tell me differently. You can't talk about the science of the universe without acknowledging the magic and beauty of people.

[marcusforst]

Lumbar Puncture Description (Worst experience of my life)

The first description is of the operations of the day April 8th (my first day of chemo). The second description is of the worst experience of my life, which occurred on April 15th. I wrote the first in a text message to my friend and I am writing the second in order to avoid talking about it ever again--I am tired of remembering. Think of this as what they do in Harry Potter with the Pensive. _______________________________________ [Day 1 text update] Chemo went super well its easy peasy. The operations really hurt. They put a needle in my back to numb it and jostled it around to get the right place and that hurt so much. Then they put in the real needle and that hurt a lot. Then they started sucking out spinal fluid and that hurt. (The pain level is gripping the table and tensing up levels of pain not screaming in anguish) Eventually I actually got numb and from there it got easy until I felt the liquid moving around my pelvis. Then they flipped me over and gave me some morphine or something and then stabbed me in the jugular vein which really fucking hurt (luckily I couldn't move). Then they threaded the catheter tube through the vein to my chest and pulled it out there. I felt it hitting the vein and that sort of hurt. Now I'm j chillin in my bed and the catheter is the only thing that hurts. That was today. Lots of pain but tons of success. My heart/chest already feel better and more open, I have no more arm needles, and chemo is all going to be okay. Rn I'm just tired and hungry __________________________________________ My second LP (Lumbar Puncture) is the worst experience that I have ever had in my entire life. The worst thing that has ever happened to me--by a mile. I have had bone marrow biopsies, I have been stabbed in the jugular, I have had a needle through my chest and fluid sucked from my lung cavity by a vacuum and my lung re-expanded by a vacuum and none of that is even remotely close to the awfulness of my second LP. I have felt short, intense pain (8 out of 10) and long, pain (7 out of 10) and that is absolutely nothing compared to this experience. Pain is nothing, meaningless. It is something you can fight through. I lift and run track and endure soreness and fatigue, I like that. This was different. To put this in perspective, I would rather do a lab report every day for the rest of my life, than to have another LP. I would rather have a level 8 pain, once a day, up and down my spine, than to have another LP. Maybe I'm just a pussy (like Corona's sister says) but it is just the worst thing ever to me. There are some places on the human body that should not be touched. The neck is one. The crease inside the elbows is another. The spine is the one that I will talk about today. _________________ A little background: The brain and the spine are very important to the body, and so they are protected from the bloodstream by the blood brain barrier. This is great so that we don't get infections in our brain! It is even strong enough to keep the brain safe from nasty things like Chemotherapy! Unfortunately, because my cancer has a tendency to spread to the brain, we needed to chemo past this barrier. So, we have two options, an Ommaya (the catheter I now have that goes through my skull, through my brain, and into my spinal cavity) or Lumbar Puncture. For time's sake, we needed a Lumbar Puncture. Again. Here is the problem, in the first operation (though it went relatively smoothly) they took out 12ccs (cubic centimeters) of spinal fluid for testing and only put back 4ccs of Chemotherapy. This differential is what caused the initial headaches and back pain that I talked about earlier this week. But, spinal fluid regenerates every day and so by hydrating (which I was doing I promise) I should have replenished the fluid and gone back to equilibrium. Here's the problem--my spine didn't heal, and so it kept leaking fluid. This caused major headaches and basically confined me to bed for 2 weeks. I could not sit up. I had 30 minutes of energy a day. I could barely move. _____________________________ [Day 8 Description--Second LP] When I came back in in a week, I needed another LP for the same chemotherapy. The doctors were surprised that I was having such bad headaches and that I had to lie down and refrain from sitting up. Nevertheless, I needed intrathecal chemo, so I needed another LP. I walk over to IR (interventional radiology) and go to the back room. They lay me on my stomach and clean off my back with a cool goo. The thing that I lie on is rather narrow, and my head is resting face down on a pillow. They ask if I want to turn my head to the side but I elect to keep my head straight because I don't really want to crick my neck. I put my arms up above my head and hold on to the table to keep stable. They start putting the materials for the procedure on my back. This is a really weird feeling--knowing that the needles and cleaning materials that they are about to stick into your back are on your back, and being able to feel them but not knowing what they look like. I never want to know what they look like. They start the procedure. In goes the local anesthesia--no biggie. It hurts, and burns but it isn't that bad. Then they put in the real needle. And they jiggle it around. And poke and prod. This goes on for far longer than the last time. I'm lying on my stomach and the dude goes, "This is completely dry. I'm getting nothing." He tells me, "Marcus, you are going to hate me, but we need to go to the second level." Now I'm not quite sure what this second level thing is, but I now know it isn't good. Out comes the first needle. In goes the second local. I'm relieved momentarily that the second level is not in fact him pressing a lot harder into my spine through the first level, but rather him moving down the spine and stabbing me again. This relief dissipates as he continues poking and prodding in my spine and says again that it is completely dry. I'm starting to sweat. I am overheating and the nurses start to bring me wet towels for my face and hands. He says that we need to go to the third level. This is the first time that, during this entire process, I feel like life is just simply not being fair. I am a 19 year old kid and I should not be having this much trouble with a Lumbar Puncture. It just wasn't fair. Of course, this probably sounds silly coming from a guy who got cancer, is allergic to peanuts and has celiac disease. But all of that sort of made sense to me. This didn't. In goes the third local. I'm praying to every god I can think of. Now I'm really hot and my body is freaking out. In goes the real needle. Poking. Prodding. A suspicious amount of not celebrating getting flow. I grow more and more terrified. The doctor tells me that he has nothing and that they might not be able to get the chemo in. That is the worst moment of my life. Pain, really isn't that bad. It is something that you can work through. At a certain point, it feels strong to be in pain. That moment of pure terror and anguish and horror and despair is far worse than any pain I will ever feel. I was like: "Oh no, you are getting this chemo in. I ain't tryna get cancer in my brain!" I think I actually said it like that. I hope so. And so he kept posing and prodding and eventually aspirated it (sucked some fluid out) which hurt a little (he also hit a nerve which was an interesting feeling all up and down my leg/butt) but I didn't care. He got the fluid to flow. They took their damn 4cc sample and gave me 4cc of chemo to my brain. Thank God. Needless to say, having 4 holes in my spine instead of 1 was less than stellar and so the next day I had to come back in and have them patch up my spine. This isn't that bad of a procedure, only a local and then they take 12cc of your blood and slather it up and down your spine. It took a while for everything to heal, but since then my spinal headaches have gone away. And that is why I got an ommaya. Tube through my brain. Yup, yes please.

[marcusforst]

Joke of the day #2

Knock knock who's there? ...not your white blood cell counts that's for damn sure... -Aa I don't get this joke. Or maybe I do. Is it a joke about the inevitable decline of my white blood cells so that I can't be around people or else I could die of infection? I guess that could be funny. Or maybe I'm missing a scientific pun here--I was never very into biology. Someone help me out here haha

[marcusforst]

How can I be sad about something so good?

I wrote this on the way home from the hospital one day after talking about it to my mom. It may sound sad and defeating and sort of depressing in the middle, but the ending is very good (albeit short). I wish I could fully depict the emotion at the end but I did the best that I could. _________________________________ I had an epiphany two nights ago. I was thinking about my first year at college and I got very sad. I was thinking about a moment that I shared with Lexi this semester in either late February or March where we were talking about how happy we were. We were sitting on her bed and reflecting on how happy we were with our friends and with our place in the world. We took a step back, looked at our lives, and felt lucky. We were working out every day, balancing school and our health and our social lives, and everything was finally starting to click. We just felt good. Happy. There is a quote that I really like from The Hours about happiness. I'll look it up and put it in here. Essentially, it is about the moment of happiness--how a lot of times we think "this is the beginning of happiness" when in reality, that is the happiness. That was my happiness. I was happy. That was the moment. I talked to Aaron about this too. We were killing it in February and March. Then April happened. I was doing a great job of balancing all of my friends. I am really proud of that. These people mean the world to me and I am so glad that I spent my time on them. I got very sad because I can't be there right now. I can't have that happiness, and I don't know if I will ever be that happy again. I don't know what the future holds--not really. I can't work out with Alec and Aaron and then stuff myself with mediocre college food. I can't work on homework in 333 with Lexi and Emily while listening to Trumpets and Someone Else. I won't ever see 333 again. I can't be there with my friends when they play monopoly, or cards against humanity or risk. I can't go and play ping-pong with Aaron while talking about sports. I can't go 232 and talk about philosophy and basketball and love and changing the world with Steph and Ashley. I can't watch movies with Shane or play soccer with him. I can't play basketball or raquetball with Shane, Zach, Aiden, Mike, Connor, Asa, and the other kids whose names are escaping me. I can't ball with Alyssa, Lindsay, or Olivia. I can't have my lunch date with Corona on Monday, or with Lexi and Aaron either. I can't go on runs with Natalie or breakfast with Ash. I can't go to SERC with Alex Lewis or on late night JNH runs with Kian. I can't play DND with Joseph. I can't go and wake Felix up or talk to him at 4 in the morning about music or other ridiculous things. I can't go to Alex Voisine's room and talk about Temple and race and philosophy. I can't go to 309 to talk to Maura, Alyssa, Megan, and Becca while they are being ridiculous and probably playing beer pong. I can't study with Shali and Mack in the classroom or Em on the 5th floor. I can't lay down with Lexi on her bed and talk the night away. And so I got very sad. But then this sadness turned into an overwhelming, feeling of happiness and warmth. Because it happened. That was happiness. There is so much good, there was so much beauty. How can I be sad about something that is so good?