Week from H E L L

On Tuesday, the sun had finally come out and I was starting to feel like the trauma of treatment was worth it. I was walking in the quad, on my way to my Comp Lit class, and snapped a picture of the palm trees above me:

After class, I was sitting on the Oval doing some reading when I got an email continued as part of a thread we have not needed for a long time: “your treatment plan.” The email’s preview had the words “You lab results from this week…”

I opened the email and saw the words every cancer patient fears so intensely there is no adequate description: “Your white count is high…not sure why…will follow the trend.” I burst into tears, sobbing in the middle of the Stanford Oval while tourists and students tanned and read beside me. I called my dad and he panicked with me: Where are you? I’m coming right now. I called one of my best friends and she raced over, parking illegally and earning herself a $45 parking ticket (sorry Amanda). My dad, desperate for information, decided to drive straight to CHO and literally track down my oncologist. Yes, he walked into the hospital and found my oncologist. By the end of the day, we had a bone marrow aspirate scheduled for the next day. I got tacos with Amanda and my sister, then went for a second dinner at an Indian place with some other friends. I didn’t get to eat for three months last time I was in treatment, remember?

So, the long story short is I got a bone marrow aspirate on Wednesday. I had a very hard time waking up from anesthesia, not sure why, and ended up in recovery for around five hours. I didn’t get admitted, but had to return to the hospital Thursday for an IVIG infusion, which I get about monthly to help my immune system. I usually don’t react to IVIG, but this time I did, chilling and shaking and again almost earning myself an admission. Between appointments, I slept in the granny flat where my dad and brother are staying since our house is red-tagged due to the mudslide. Friday, I got the call that my MRD is negative. I am still in remission. Then, I returned to school in time for my last Friday afternoon class.

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I’m sitting in the Stanford bookstore cafe, wondering how I will ever catch up from the week of school that I lost, if med schools will understand that classes can’t always come first for me, and whether the universe will ever cut me a break. I must’ve jinxed myself Tuesday, thinking this was all over.

 

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Maybe this motel will burn down, too

Well, when it rains, it pours right? It’s been pouring for weeks, and the hill behind our house slid right through our back wall. Awesome!!

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I’m sure you can guess which house is mine. Anyway, the inside looks like this:

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So, we’re pumped about that. If you want to see my dad on the news, click here: http://abc7news.com/1746348/

We were all pretty devastated for a few days. Sure, it’s just stuff, but it continues to feel like the universe will not give us a break. The day after the mudslide, my brother and dad were staying in a motel and the fire alarm went off. My brother looked at my dad and said “Wouldn’t it be funny if this motel burned down?” So, that’s how we’re handling this.

I had my first clinic in 5 weeks (!!!!) today. Clinics are starting to revolve around long-term care – physical therapy, figuring out how to eat with a damaged gut, dealing with my hair and post-menopausal issues. I have developed joint pain in my hips, knees, and ankles. It’s the worst in my hips, to the point that when I wake up in the morning I can barely walk. It’s probably AVN, which is necrosis of the joints caused by long-term prednisone use. It’s not really fixable, other than with knee/hip replacements, which are obviously sub-optimal for a number of reasons. I’m getting an MRI at my next clinic in 2 weeks. Speaking of my next clinic, we are going to do my first test for immune reconstitution! Since I am now over 16 months post-transplant, 2 months off prednisone, and have not been in-patient in over 2 months, we think there is a chance my immune system is functional enough for me to stop being technically “immune compromised.” This would also mean I would be eligible for re-vaccination. I cannot wait. It scares me to be in the world unvaccinated, especially in an area with such a high rate of elective vaccination refusal (which is so dangerous not only for people who refuse, but also for everyone around them!! It makes me so upset).

Anyway, I’m chugging along. I didn’t fail my midterms, and I have a summer internship offer on the table doing cancer research in NYC. I haven’t decided exactly what I will do yet, but it feels nice to have options. Life continues to be confusing, a mix between Stanford and a world I feel tied to in so many ways. I feel both honored and angry that I am experiencing it all.

PS if you are a Stanford student in the Class of 2017 come check me out at FACES of our Year on Feb. 22! https://www.facebook.com/events/984969061603790/

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World Cancer Day

February 4 is allegedly world cancer day. I have never heard of this before so who knows if it’s real, but I’ll go with it. I spent today having lunch with friends and studying for a chem midterm. It was a pretty normal day. Every day, when I wake up my body aches from walking to my classes the previous day. Usually I’m nauseous or especially tired or having some other symptom that I have come to consider mild. This is frustrating.

But more importantly, these past few months have brought the loss of two children who wanted  so badly to live, probably more than I did. I saw Chy for the last time on Christmas day, and she died a few weeks later. She was still there on Christmas. So incredibly there. Stuck inside of a body that had utterly failed her. And I am so sorry. I wish I could’ve fixed it. Chylee is one of the reasons I am so incredibly adamant that “strength” has nothing to do with cancer survival. Chy was as strong and cheerful as it gets, more than I ever was in treatment. Chylee also had a lower risk cancer when she was initially diagnosed. The world isn’t fair. It sucks.

When Antonio died, I was in the hospital for a stupid cold. I was cared for by a nurse I didn’t know, and when I asked her whether I was going to be rounded on that day (it was mid-afternoon and I still hasn’t seen a doctor) she said that the doctors were busy because an onc patient had recently passed in the ICU. My heart dropped. I have never seen anyone endure so much for so long…it was a level of pain I will never put into words and that none of you can grasp unless you’ve seen it. So much pain. I am attending Antonio’s funeral in a few weeks. When I saw the announcement, I thought about checking my schedule and then I realized that it doesn’t matter. It is so confusing to be in the middle of Stanford worrying about my grades and summer internships when such a big piece of my world is suffering so severely.

To honor world cancer day I encourage all of you to stop romanticising cancer, to really sit with uncomfortable truth that it steals so much and in ways I could never have fathomed before I was thrown into this world. It feels so wrong to update you all with the truth that I am doing okay. Not great, but okay. Much better than the past few years. For now, okay is acceptable. Good days and bad, but not all bad days. Fewer good days than before cancer, but more than while I was in full-time treatment. Today this all feels especially heavy.

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Back to School

I made it! After 18 months (and 15 months post-BMT) I have moved back to Stanford. Being sick makes planning things so hard, and I wasn’t even 100% sure I was going to come back until I was actually packing my things. I still feel like the other shoe could drop at any minute.

I was very conflicted about coming back to school. I’m not in perfect health – I was in the hospital a few weeks ago – and people keep telling me to relax. First of all, I do not relax. But more importantly, I really needed to have a life again. Lounging around sounds so great when you are super busy, but having no direction was isolating and depressing.

Treatment made me nocturnal. Falling asleep at 2 AM was a good day (usually it was more like 3 or 4). Waking up by noon was an accomplishment. With this in mind, coming back to Stanford was scary. I scheduled all my classes for afternoons, but still, it’s awkward to be on a completely different life schedule from everyone else. Shockingly, the sleep problem I have been struggling with since the beginning of treatment has resolved itself in my first week of school. I think it’s because I’m tired after running around all day and excited to wake up in the morning. What a relief.

I’m about one month off of prednisone and so far, so good! I am doing a hydrocortisone taper to help my body’s natural steroids wake back up, since I was on prednisone for over a year. It’s been going really well – I am down to 17.5 mg per day (was on 30 when I started). I have about 5 weeks to go. My face is getting closer and closer to being normal again. They say it takes about three months to return to normal after being on prednisone, so hopefully I will get more and more beautiful over the next few months. I have a secret fear that I will be off prednisone and still horrified by the way I look, but I guess there’s always plastic surgery. In other good news, I was recently moved to once monthly BMT clinic! I have been going every two weeks forever, and having a once-a-month doctor’s appointment feels like a totally reasonable, normal person amount of doctor’s appointments. I am still immune-compromised and unvaccinated, but in about three months we can begin testing for immune reconstitution, at which point I will be declared normal, released from BMT care, and transferred to long-term oncology care. I’m not quite there, but I can see the light.

Here’s a picture of me looking kinda normal!

This time last year I thought my legs were a tree trunk and my NG tube was a snake

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My last day of prednisone

Today I took what will hopefully be my last dose of prednisone. My relationship with this drug has been horrible – in addition to the hot flashes, irritability, lack of sleep, weight gain, and puffy face, it brought with it a feeling that my life was not under my control. Of course, none of us really control our lives, and mine has been even more out of control since I was diagnosed with cancer, but the incredible side effects of prednisone remind you of this physically. All day, every day. In some ways, I felt that I was back in puberty – I did not understand or feel comfortable in my body, and I had no power to change this. I feel that this is not fair at all. Puberty was bad enough the first time, for God’s sake.

With every decreasing dose of prednisone, I have felt a little bit better. A little more hopeful. Today, along with my last dose of prednisone, I got some long-term follow-up results. They are nothing surprising, but sad nonetheless. Severe loss of bone density and muscle mass along with a deficit of several important hormones.  I am 21. I have to live in this body for the rest of my life.

There is also good news. My biopsy results showed that my hair follicles are in a “sleep-like” state because they are in shock after all my body has been through. With treatment, they should mostly wake up in the next 6 months to year. My organ function is good, my immune system is reconstituting, and my counts are stable. Last week, I got a bad viral cold and spent a few days in the hospital, but my body has been able to fight it reasonably well and I am recovering. For reference, when I got a cold during chemo, it devolved into pneumonia and I spent several weeks on oxygen. There is a light – not a return to my old life, but hopefully a jump toward a new normal.

I’m moving back to school in a little over a week and I’m scared and overwhelmed and excited and tired. Part of me wishes I was in better health, but the bigger part knows that I need more in my life than cobbled together part-time classes and jobs. I need a real life again, and I’m so excited to spend the last 2 quarters with my class before most of them graduate. Overall, my holiday season definitely beat last year at this time, when I was inpatient with grade 4 graft vs. host disease and panicking so severely about my illness that the doctor who rounded on me on Christmas exclaimed “We can’t leave you like this!” and promptly dosed me with 2 mg of Ativan (a benzo at about 4 times the normal dose).

Vittimbergas do Christmas ⭐️

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Don’t find my silver linings for me

An amazing woman, Heidi, said this to me while I was in the hospital last week. She said it to me after she told me that her daughter, Chylee, has no more viable treatment options. Afterward, we spoke about how her 14 year old daughter felt about dying. We also spoke of the things we were grateful for – for our nurses and doctors and families. I am grateful for many things, but have struggled to put them into words because I feel so defensive about how impossible it seems to be for people to admit that so much of this is horrible. I know that it is difficult to admit that a situation is terrible, that we so frequently feel like we must solve a problem, but often a “you’re right, this sucks!” more than suffices (though you can throw in a gift card to Madewell, Crate and Barrel, or Sephora and I won’t complain).

Right now, many of the biggest problems in my life revolve around cancer. They are not as serious as my problems were when my chemotherapy didn’t work or when I almost died of GVHD or when I was in the ICU on a ventilator. That does not mean they are not real or valid. So frequently I have friends afraid to tell me their problems because they fear they are not valid in the face of my illness. They absolutely are. In the same way, my struggles with having a puffy face or bald patches in my head or weak muscles or just plain wanting to go on vacation are valid in a dimension separate from my gratitude that I am alive.

When I complain to someone that no one can figure out why my hair isn’t growing in and they reply “Look at the bright side, at least you have hair!” or worse “At least you are alive!” it makes me feel like they do not see that my humanity is equal to theirs, like they feel that because I had cancer I should simply be grateful to be alive and have no other wishes. Imagine if you called up your friend, told them you were going through something tough like a break-up or an injury or a bad grade on a test and they said “At least you’re not dead!” Kind of jarring, isn’t it?

Last week, I saw a dermatologist to address the large bald patches on my head. I have never felt so relieved as when she said “This is not normal.” I got a punch biopsy of my head (imagine a hole punch and your skin, ew) and should find out soon whether they are able to determine why my hair isn’t growing in normally. Some theories are that it is Busulfan-induced alopecia (permanent), my dysfunctional immune system attacking my hair follicles (not permanent), or my hair follicles are dead (permanent). Let’s hope for the immune system one.

My silver linings are that this doctor heard me and validated me without soliciting my gratefulness for my life. My silver linings are spaghetti and meatballs and peppermint bark and warm coffee while it is raining outside. They are my scheming to return to school, a beautiful trip to Point Reyes with some important people last week, watching reality television and feeling completely unashamed. They are things to look forward to, like my upcoming Levinthal Tutorial at Stanford and my research in pediatric immunotherapy. They exist alongside my grievances.

A reminder of how much I have lost – I kept a journal throughout my treatment up until my bone marrow transplant. My silence during those months was meaningful. I was so incredibly ill. On January 21, I picked up a pen for the first time since before my transplant and wrote this:

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Survivorship Sucks – Reasons to remove the phrase “At Least” from your vocabulary

Survivorship is hard. I’m about 14 months post-transplant now, and I expected things to be easier. Of course, the story of my treatment seems to be that when things can go wrong, they do, so here goes:

I am severely infertile, as expected. I am really sad about this. I love kids. I was at Whole Foods today and I saw this little blonde girl and every time I see a kid who reminds me of me as a kid I just think of how I don’t get to pass on my genetic material. Not that I’m the greatest genetic material since ever but still, it’s cool to think of kids as a mix of you and your future spouse and all that good stuff. “At least you can adopt, get an egg donor, etc. etc.” Sure, I can. I will be fine. But still, let me mourn the death of my ovaries!

In the more immediate future, I have been struggling with menopausal symptoms since transplant. If you’ve been through menopause, or your mom/wife/sister/friend has been through it, you know it sucks. I get these insane hot flashes that honestly feel more like panic attacks mixed with ants crawling all over my skin. I have been on some meds that don’t mix well with estrogen (blood issues and estrogen don’t go well together) but I recently started hormone replacement therapy and I feel way, way better. In other news, my uterus is a barren wasteland and most likely “hostile” to human life. Awesome.

My GVHD is much better. Still, I once in awhile find myself 20 minutes late to things because I was curled in the fetal position in my car begging the cramping to stop and hoping that I don’t vomit whatever is in my stupid, GVH-riddled stomach. Then, I arrive at my destination and feel a deep compulsion to explain that this isn’t my REAL face, that it’s just the prednisone making me ugly. People tell me I’m still pretty or whatever – NO, please tell me I’m ugly! I don’t want y’all thinking that I actually look like this!! “At least you can eat now and you’re on less prednisone.” Listen to how ridiculous that sounds.

I have huge bald patches on my head. People keep insisting that it’ll “fill in.” First of all, it’s been 14 months since my transplant and I am allowed to be upset that I STILL don’t have a full head of hair. Second of all, it most likely won’t fill in – it is likely chemo-induced alopecia caused by Busulfan, one of my transplant chemos. There are a lot of studies on Busulfan-induced alopecia and it is almost always permanent. “At least you have some hair.” Seriously? Would you be fine with huge bald patches all over your head? If you would be, you’re welcome to join me – I’ll even shave it for you. I was actually chill with being bald. It was okay. Sometimes when I was in public and people were staring at me, I liked to think they were trying to decide if I was edgy or sick. Obviously I was both. But now, the last thing I want is people thinking this was a style choice.

Surviving cancer is like getting older. Not the wise part where you have high earning potential, but the unfortunate part where nothing works right and you’re cranky about it. Sure, it’s better than the alternative, but that doesn’t mean I have to be excited about it.

Being a professional patient is a weird thing. You find yourself saying things like “my kidneys hurt” instead of expressing generalized back pain. You’re late for things and you’re like “oh it’s just this disease I have..” You start calling your procedures “minor” because even though you are under general anesthesia, you aren’t getting any major muscles cut open and you fully anticipate finishing your math homework later in the day. That’s life.

I recently got the green light to carefully return to school in January. This summer, I took a class at Stanford called “Sociology of Health and Illness.” One of the topics we studied was this idea of the “sick role.” For people in the sick role, your primary job is to get better. This idea was developed before medicine was where it is today, before you could successfully live alongside a chronic illness. I find myself leaving the sick role, trying to understand how this illness will impact me in my day-to-day life. I will be living in graduate housing in order to accommodate my immune and dietary issues (holla at my #mungermansion). I am nervous – my body is unpredictable yet I still I expect a lot of myself. I’m cautiously optimistic. I have not been inpatient in over 2 months now, and I get stronger every day. It’s easier in some ways, but it’s harder in others. In summation – you’d be pretty pissed if you used to be a normal human and now you have a chronic stomach issue, large bald patches on your head, infertility, muscles so weak you can’t take 2 stairs at a time, and just lost a year and a half of freedom. “At least” is not a good phrase for this situation. Recovery is a long process – please remember that just because the hair is (kinda) growing back and my muscles are returning doesn’t mean that this is over for me.

 

 

 

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