Day +30: how did I make it a month!

Hi hihihihi

This part was the worst thing ever. Before I went in for transplant I was obviously terrified so I read a lot of other people’s blogs and there were two in particular which I referred back to over and over while I was laying in my bed trying to remember that the pain wouldn’t last forever and feeling anxiety about whether my kim kardashian hollywood fake boyfriend would break up with me if I didn’t play for a few days (I risked it and he didn’t).

The first was a blog written by a guy named Austin in Boston. Weirdly, he had the same rare chromosomal subtype that I have (Philadelphia positive) except in ALL instead of AML. His blog is really cool and relatable especially since he was 23 when he was diagnosed. His writing is really good at capturing physical experiences so here are some quotes that I found especially relatable:

“My bones feel like they have angry little creatures living inside them and they want out. I can only imagine this is how you feel when you regain consciousness after being hit by a bus. The pain and side effects (mostly more mucositis and mouth sores) should continue to get worse through ~ day +10 as the cells graft to my bones.”

“After spending so much time in the hospital you expect a wave of relief when you get to go home – and while I was relieved, it didn’t last. As much as I was angry at the cancer for forcing me to confront my mortality before I planned on it, being home it forced me to evaluate what I really have left in my life. what if I don’t die? What life do I have to pick back up? Now that I’m 23 and most likely infertile I can tell you how much I’ve always wanted a little girl… I hate this cancer for forcing me, at 23-years-old, to miss the daughter I may never have.”

Austin relapsed after his transplant and died. His blog is at http://www.thisisaurl.com/ if you want to read more.

The second and most repetitive thing that ran over and over in my head was written by the mom of a patient here at CHO. His name is Bay and he is 9. He had relapsed AML and underwent 2 consecutive stem cell transplants (!!) after his first failed to engraft. His transplant happened on September 23, 2014 – one year and one day before mine. The day before my transplant I looked at his mom’s facebook page and saw a beautiful picture of him celebrating his first “re-birthday” (https://www.facebook.com/photo.php?fbid=10208107742240894&set=a.3435724621446.2160192.1520371947&type=3&fref=nf).

Anyway, the quote that ran over and over in my head was posted during his transplant: “He keeps saying ‘I feel like I’m dying.’ I tell him ‘this is what it feels like to be getting better.’ One day at a time.”

30 ‘one days’ later, I am looking toward discharge much earlier than expected (perhaps even Monday?). Leaving the hospital is scary. After 4 1/2 months of almost exclusively inpatient treatment, I have a whole new task ahead of me in the outpatient world. Meds, clinic visits, trying to live in the outside world without an immune system, leaving my lil baby cancer friends and the families, doctors, and nurses who have pulled me through the scariest, most intense moments of my life.

One of my strongest memories from this experience comes from my first admission. When I was admitted, my blood was 89% cancer and I had both pneumonia and RSV while doing my first round of chemo. My hair was falling out, I had constant fevers, I could barely remember my name. Taking a shower was so difficult that I would need at least 2 hours to rest afterward. When I fell asleep, my stats would fall even while I was on oxygen. The dry oxygen mask irritated my throat and had me practically coughing up a lung but the humidified mask made me feel like I was drowning. I remember laying in my bed for days, afraid to sleep because I was terrified someone would miss the monitor beeping and I wouldn’t wake up. I cried every time I woke up from anesthesia because I imagined that the absence in my consciousness from the surgery was what it would feel like when I died. I remember wondering how I would ever leave this place and trust my body to carry me through a night without constant vital checks and someone watching me sleep.

Last week, the doctors cancelled my 4 AM vitals. For 4 months I have had my vitals taken every 4 hours – I never slept longer than 3 hours at a time and in a way I was grateful for it. But now I feel ready. I trust my body and I am so excited to see my skin heal, my strength return, my hair grow back, my central line removed (2 more months), my body become my own. I want to climb Machu Picchu – I have been sick almost a year now (6 months of that undiagnosed) and I want to be strong enough to spend 4 days hiking. Most of all, I hope I will have the chance to see the incredible anxiety that surrounds relapse gradually fade until I am 2 years out and considered low risk for relapse. I am acutely aware that my risk of relapse is extremely high and this may not happen for me.

As I type this I am holding an 18 month baby named Abri on my lap. We were admitted 3 days apart from each other – both with high risk AML. Abri and her mama make my days so much better and we have many shared hobbies including frozen bowling, sticking our tongues out, and being exasperated with chemo. Abri’s AML is relapsed and she still has a long inpatient road ahead of her – more chemo and a stem cell transplant included. She is far from her home in Nevada and her family travels 4-5 hours each visit.

IMG_0391

This is how we feel about chemo

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^She stole my hat

Please consider donating to Abri’s journey here: https://www.gofundme.com/x8wx6pg8. Here is a message from Abri: f ppom m n

Anyway, I am going home soon and I know that many of these stories end in a relapse. I am scared. I am also honored to have survived AML once, to have confronted my mortality and to leave the hospital in remission and having endured ~115 days of hospitalization, 3 rounds of chemo, 5 major infections, and a stem cell transplant.

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About Brooke Vittimberga

I have cancer...oops
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3 Responses to Day +30: how did I make it a month!

  1. Anonymous says:

    Hi Brooke,
    I’m a sophomore at Stanford and I don’t believe we ever crossed paths last year other than maybe a few mutual friends. However, I’ve been reading your blog posts every time since they began showing up in my news feed in July. I was sitting in the Bender room of Green library tonight, writing my PWR paper when this latest post came across my newsfeed.
    I wish I hadn’t been in the Bender room, since I couldn’t hold back a sea of tears that complemented your powerful, surreal words about trusting your body, again.
    Your words resonated with me deeply and forced me to confront the life I’m living. If I were to be diagnosed with Cancer tomorrow and have the freedom of my body taken from me in an instant, I wonder if I would regret the way I have been living. Would I regret being in the library on a Saturday night and other decisions of my life… I need to get in touch with what I am working toward in my life.
    These thoughts you have about mortality and living are so insightful in the most untraditional way. Thank you for pushing me to recognize the privilege I have in trusting my body.
    I hope you come to more insightful, thoughtful realizations after being discharged and share them with us. Sending healing vibes to you ❤

    Like

  2. melissa says:

    Wow! Powerful insight! You have amazing strength! Your words say so much! Thanks for sharing your journey with all of us. You might want to check out Anita Moorjani’s journey with Stage 4 Cancer! It’s very powerful as well! She was given a choice to leave or come back into her weak body. She chose to come back! Here’s to you my dear cousin! Welcome home

    Like

  3. Eric L. says:

    Hi Brooke,

    I first saw your blog through friends on Facebook, and I admire your courage, fortitude and mature perspective. I can’t even imagine the pain and suffering you’ve been through, but I think I understand a bit of your insecurity regarding relapse and trusting your own body.

    I’ve been on medical leave for over a year now because of a spinal cord injury I sustained while surfing that left me completely paralyzed from the waist down. I lost my legs, couldn’t even sit up straight, and had not control over my bodily functions (the 2 P’s).

    After six weeks, I noticed that a little bit of muscle about the size of a quarter quivered when I focused all of my mind on contracting my quadriceps. It was a glimmer of hope accompanied by an ocean of uncertainty (“what if” as you call it). I didn’t help that most people, my doctor and therapist included, didn’t think it possible that I would make a full recovery. It’s now been 16 months and I’m able to walk (slowly and unsteadily) on my own. It may not be ideal, but it means I have the independence to walk around the mall and to take care of myself at home. I feel like we may be in similar places, as in I’m not sure if I’ll ever walk normally again and you’re not sure if your AML will relapse.

    I’m not sure what you and your family’s religious beliefs are, but throughout my recovery my family and I have been releasing animals and sea life destined to be eaten by humans back into the wild. Mostly we buy live fish and fish eggs from the market and release them into suitable habitats. We’re essentially trying to give those animals a second chance at life and spare them from the pain of being slaughtered, dismembered, broiled/fried and eaten. I believe it’s helped me recover to an extent that no one (except perhaps my mom) thought possible.

    I should probably mention that there is no medication/medical treatment in existence that is proven to promote the growth/repair of dead/damaged nerves, and therapy only allows me to strengthen my muscles to the extent the condition of my spine allows.

    There are other cases like mine where people recover from severe or even life-threatening disease/injury by releasing animals. Most of these cases are in Asia where this practice is more common. However, there is a Canadian lady who recovered from terminal skin cancer and a subsequent relapse by releasing sea life on a daily basis and by saving cats and dogs from being euthanized at the pound and then finding owners for them. Her name is Ann Coombs and you can reach her at acoombs@coombs.ca

    I think both of our experiences have taught us just how fragile life is and how good it is to be alive and well (in your case, getting better). I’m sharing my experience with releasing animals with you so that you and/or your family can do that if you choose to. It gives me joy when I see lives that feel pain and joy and sorrow just like us freed from terrible, certain death and given new life. I wish you the best with your recovery, and feel free to reach out to me at ericlin8429@gmail.com

    Sincerely,

    Eric L.

    Like

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