I asked my oncologist how surprised he is that I’m alive. First he laughed – because I phrased the question absurdly, he said – and then he said the only two times he thought I was going to die were when I didn’t respond to induction chemotherapy (he said he didn’t think I would ever get into remission) and last winter when I went into kidney failure and had to be removed from my immune suppressants while experiencing severe GVHD.
The further I get into this, the more I try to protect myself from trauma. I no longer believe that surviving a catastrophe like organ failure is the end of it. I think back to times in my treatment where I was most scared, in pain, suffering – and realize that those moments are traumatic in permanent ways.
There are a few that stick out – when I had my ovary removed after my first round of chemotherapy and was not given adequate pain meds at discharge (I basically screamed in pain for 3 days but didn’t know I should ask for more, thought it was normal), when I found out my first round of chemo didn’t work, when that resident refused to give me morphine while I was in extreme pain in the first week after my transplant (the power trip aspect of that was most traumatic, because he could help me but chose not to), when the central line spilled into my lungs and I thought I was going to die that minute and ended up in the ICU, when I couldn’t eat or drink anything for 3 months, when the doctors at MSKCC refused to treat my GVHD (another power issue), when the scleroderma hit, when I went into kidney failure and again couldn’t breathe because of fluid filling my lungs, when they put a dialysis catheter in my chest while I was awake.
There are smaller traumas – smells, sounds, daily reminders covering my body inside and out. But those acute moments of trauma – they never leave.
Now that I am further into this, I can recognize what will leave a lasting effect as it is happening. When I went into kidney failure last December, I was scared not only because I thought I might die, but because I knew that if I lived it would be with a permanent trauma. The result was what I expected. I hear the ICU fellow screaming “give her more lobetalol” in my dreams, I remember having a hard time telling the doctors my name, I remember wondering if I would need a kidney transplant, and if so if I would be willing to do it. I remember being scared because the nurses were messing up my medications. I remember having a nurse forget to turn the call light off when I asked for more pain medication, and I remember her laughing that she wished she could press a button and get oxycodone on demand (honestly no words for this, I’m not even going to bother dissecting all of the things wrong with that).
So last quarter, I ended up in the hospital during week 10. It honestly wasn’t that big of a deal – I caught a stomach bug. I’m immune compromised and these things happen. But after how awful my experience was at Stanford Hospital last December (not just because of how sick I was, but also because of the care), this time when I woke up sick I made my mom drive an hour to Stanford, pick me up, and drive me an hour back to CHO. I am so glad she did.
I couldn’t keep any water down. I threw it up in minutes. I was so, so thirsty. And I panicked. I wasn’t really any sicker than most of you have been with a stomach bug. But I was so thirsty. I was immediately back in winter of 2015/16, when I was in a drug-induced delusion that made self-control impossible and when I was so, so, so thirsty that I cried almost every hour, begging for water. I was tortured – for my own good, but still tortured. In the ED at CHO, it took a long time to get an IV. First of all, I had spent an extra 2 hours getting there with the round trip drive from Stanford. Second of all, I was really dehydrated. Third, the ED nurses were scared to try to get an IV because I’m a hard stick (my veins are beyond used up), have scleroderma, was dehydrated. They tried to call the IV access team, but the team was busy. They argued with each other, each trying to convince another to do the damn IV. I was so, so angry. I was panicking. I was so thirsty. I have compassion for the fear of messing up an IV – it sucks for the nurse and the patient. But you have to do it. Having to talk nurses into doing an IV when I desperately need one is frankly infuriating, and mixed with panic it just isn’t a good place to be.
Anyway, the long story short is that I really only needed a few days in the hospital. I went back to school during finals week. I felt like hell, but I did it. I actually got my best GPA ever. I got my first A+ ever, in child health (which I’m especially happy about because…child health. I definitely had a leg up there lmao). I wasn’t traumatized again, even though the ED visit was…I guess the word is triggering.
So here I am in January 2019. I am truly stunned that I survived 2018. I really, really thought I was going to die – the scleroderma progressed so quickly and so severely. I couldn’t breathe (under 50% lung function), couldn’t eat (skin was so tight my stomach couldn’t expand and I would spit up basically), was so so itchy that there aren’t even words for it. The fatigue was immense. The brain fog was unbelievable – I could hardly finish a sentence. The central line was horrific – the dressing rubbed my skin raw and changing them involved scrubbing them with what felt like fire. It was a daily trauma in the same way the gut GVHD/forced thirst was in 2015.
The dialysis catheter (put in awake) had to be revised twice, so I had a total of 3 procedures (at least the second 2 were asleep). Because of the scleroderma, each procedure left huge gashes in my chest. They took over 6 months to heal.
My body was covered in sores that also took over 6 months to heal. Some are still healing. Some have taken over a year. That’s an example of one on my stomach, but I have/had over 20.
My feet were so swollen from fluid retention due to the kidney failure I literally had no ankles
Over 90% of my body was covered in scleroderma. So itchy.
The central line created even more wounds, many of which are still healing. The open wounds had to be scrubbed with CHG every week.
That was my year. Yes, I went back to school in the fall. I was still so tired, so not myself. But I had some happy moments, really happy moments. I feel even better this quarter. I would even say I’m somewhat optimistic. But more than anything, I am beyond scared of the other shoe dropping. I am so scared every single day. Every new thing is harder than the last – I have more traumas to be reminded of, I’m more aware of what I will experience, I’m aware of how it will impact me in the future. Kidney failure was different because as it was happening, as I was listening to the ICU doctor scream for the nurses to push lobetalol, all I could think was that if I survived, I would never leave this moment behind.
You might be shocked to know (I was) that professors receive zero training in disability accommodations. Zero. I have been working on this, and after many meetings faculty chairs will have their first ever disability training (15 mins) in January during their 3 hour mandatory training. This is only the beginning – Stanford has so far to go – and I want all students to know that your professors do not know what they are talking about! They do not know your rights. They will often tell you that an accommodation is not possible or reasonable when you have an absolute right to it. I am going to list some of the issues I have faced while attending Stanford as a disabled student. If you don’t care about that (no worries, I won’t be offended) skip to Part 2 for tips on how to navigate Stanford with a disability (many of these tips are universal, so if you don’t go to Stanford they can still be helpful!). Also, I came with receipts – I really went there.
Part 1: My Experiences at Stanford
When I returned to school for the first time in January 2017, I was placed in Munger as a result of my doctor-mandated disability accommodations. Okay, great, I thought. Then I got my student bill. It costs about $10k more per year to live in Munger than it does to live in an undergraduate dorm. Stanford did not cover these expenses. I contacted my OAE officer, who basically told me tough luck and that this wasn’t covered. I asked financial aid, who told me to ask OAE. This is really common – being pinged around but no one actually solving the problem. I finally reached out to Lauren Schoenthaler, Stanford’s disability lawyer, and she shockingly resolved the situation by getting financial aid to increase my package to cover the difference. This took hours of my time and was super stressful, but what bothered me the most was that OAE told me no. The answer was not no, and it shouldn’t have been anyway. It is not an accommodation if I can’t afford it. I tweeted about this, and several other undergraduates placed in graduate housing reached out to me about their expenses. I explained to them what I had done, and they followed the same process. But most students don’t know about this. When you are told “no” it is not intuitive to keep asking. Stanford knows this. “No” does not mean no when it comes to accommodations.
By the way, two years later Stanford is in the final process of approving funding to automatically pay this difference for disabled students placed in graduate housing. When you make noise you can make a change!
Most of you know about my experience with Stanford Chemistry. I wrote a post about it here: Stanford While Disabled. Here is an excerpt:
There are 9 labs in my organic chemistry class. I made it to labs 1-7 and missed lab 8 due to a freaking transfusion reaction to IVIG. I was literally shaking, my kidneys were freaking out, I obviously could not go to chemistry lab. I emailed the professor and she told me that the lab would have to count as a zero, dropping my grade about 5%. I responded that there was no way for me to make it to the lab and this is why I have OAE accommodations. She responded that she was “starting to become uncomfortable with being able to say that you actually completed enough of the course.” To clarify, I completed 7/9 PSETs and 8/9 labs. I also took both midterms and will obviously take the final. She is uncomfortable. Sorry prof – I’m uncomfortable every second of my life.
Little did I know this would become a 6-month long debacle. I know it’s normally not cute to talk about grades, but it’s relevant here. I need a B in all my medical school prerequisites as a condition of my acceptance to Mount Sinai. After this missed lab, I received a B- in Chem 33. If this were any other scenario, I probably would have let it go, but this meant I would have to retake the entire class. After how it went the first time around, I simply could not do this. Also, it wasn’t right. So, I met with OAE, who again shrugged their shoulders. Finally, I got a meeting with the chair of the chemistry department. This event had occurred May, the course had been completed in June and by now it was October. This meeting was honestly traumatizing. The chair went on and on about how they did not have the resources to offer make-up labs, how there was no possible alternative assignment, how they also have this issue with NCAA athletes (which is a really offensive comparison). He said disabled students are a burden. I asked if he knew about the ADA and he physically scoffed, countering that he was not a lawyer. I responded that neither am I, but I still have to follow the law. Finally, I asked him what he wants me to do as a disabled student. After a long pause, he said the words “I guess you have to take it elsewhere.” My jaw dropped. Since that day, I have heard those words thousands of times in my mind. The chemistry department has made it extremely clear that disabled students are not welcome, and despite knowing about this OAE did nothing. In the end, he changed my grade to a B, probably just to shut me up. I took it and left.
When I moved back into Munger this year after my second medical leave of absence, my move-in window was set for 1-5 PM. I had a doctor’s appointment at 2 PM in Oakland that day, so I emailed the manager explaining that I am disabled and have a doctor’s appointment. I asked if I could come at 11 AM instead – I didn’t even need to go into the apartment, just get the keys. She told me I would have to do after-hours check-in. I did this last year, and I had to wait 2 hours outside in the sun, sitting on the ground outside of a building in Escondido Village. Because of my photopheresis treatments, I cannot wait in the sun. I explained this, and she responded that getting my keys 2 hours early would not be “equitable.” I had to call OAE, have OAE call her and explain disability accommodations, and finally she was required to allow me to move in. While this was not a huge deal, encounters like this are frequent. No one at Stanford is trained in the ADA. They don’t know your rights, and they will tell you “no” even when you are entitled to an accommodation. Read her cute, condescending email here:
Medical Late Withdrawal:
Last fall, I was enrolled in 3 courses. I went into kidney failure and could not complete the quarter. I was able to finish one class and received incompletes in the other two. When I came back this fall, I needed to finish these incompletes on top of my other courses. I quickly realized that this was not possible, and immunology was the obvious one to drop because I was missing so much class (it conflicted with BMT clinic frequently). I reached out to OAE, and this was their suggestion: If you take the F, will your medical school rescind you? Do you think you can do the minimum and get a C or a D?
This is a horrific thing to say. Disabled students are entitled to accommodations that allow our transcripts to be reflective of our work, not how much class our disabilities cause us to miss. I asked about a late withdrawal and whether that was an option, and my OAE officer had no idea. I went to UAR, who said they had no idea and sent me to a dean. Finally, the dean told me that yes, there is a form to petition for a late withdrawal. I turned in medical documentation, wrote a long statement, and got an email of support from my professor. It was a lot of work. After the withdrawal was approved, I received this message:
The only proper response to that message is this:
^thank you for this, Vanessa. ilysm.
The idea that I withdrew because I was not “attentive” is so offensive. I was “attentive.” I got really sick after I enrolled in that course. Incompletes last a year before switching to Fs, and a year later I still wasn’t better. This had nothing to do with inattention. Not to mention that this petition is hard enough to file, and I doubt they are approving them because someone was not “attentive.” If they approved it, then they decided you had a good reason. There is no reason to shame the student.
There have been more incidents than this, but these were some of the ones that stuck in my mind. The common theme is that I am often told “no” when “no” is not the answer. The most maddening thing, in my opinion, is that OAE is often the team telling me no. They are supposed to be our advocates, so when they say “no” of course most students would be inclined to believe them. I almost wonder if OAE is doing more damage than good.
Part 2: Things you should know
So, when should you take “no” for an answer and when should you not? If someone is telling you “no” then what should you do?
First of all, you are entitled to “reasonable” accommodations. This means that in a class your accommodations cannot change the “nature” of the course. For example, if you can’t show up to class then a group/project-based class won’t work. They can’t let you do it all from home. If you have anxiety that prevents you from speaking publicly, then you can’t take a public speaking class and do no speeches. However, for something like missing a chemistry lab, you should be able to make it up or have an alternative assignment. If you are sick you are entitled to an extension even if the professor says no. Your professors have to work with you – this is not in addition to their job, it is part of their job. When a professor tells you no in response to something you could not prevent, escalate it. This also goes for issues with housing, late withdrawals, mobility accommodations, paying for accommodations, and anything else you might encounter. Do not take professors’ (or other university employees) word about what is “reasonable” as law – many of them know this is a buzzword and say it even if the accommodation is reasonable. If you think it is reasonable, or even if you aren’t sure, then keep asking. So, who should you ask? Here goes:
OAE – You have to start here. Forward your email communications to your OAE office and ask them for help. I find that it is helpful to offer suggestions to the professor about resolving the situation (i.e. I missed a chemistry lab and you say you don’t have the TAs to hold another one, so can I do the write-up and then go to office hours and talk to the TA about the lab for 20 mins?). If you don’t have an idea, you can also ask your OAE officer for suggestions. Many times this will be the end of the road!
When OAE isn’t helpful you still have options! Here are some of them:
The Diversity and Access Office: Rosa Gonzalez, the director of ADA compliance, can help you resolve the situation. If she can’t, then she can also help you file a grievance with the university. I have never filed a grievance because no one had ever told me about it! It’s important to file grievances relatively soon after an event occurs, but of course no one told me about this in the six months of meetings about chemistry.
Lauren Schoenthaler – She is a lawyer and Vice Provost of Institutional Equity and Access. She is one of very few people at Stanford who has ever taken me seriously and actually helped me resolve a situation (i.e. housing).
University ombuds: Ombudsman are here to “help you resolve and cope more effectively with tough situations.” I have met with them before, but I didn’t find them very helpful. Maybe others have, though.
Susie Brubaker-Cole: VP of Student Affairs. She holds office hours. I went once and told her about all of my experiences. She didn’t actually do anything for me, but she did listen and promise to take my thoughts into account. We will see if this actually happens.
Deans, provosts, professors: Ask people you trust. The most important thing in a conflict is to have someone on your side. The hardest part of finding accommodations at Stanford for me has been that no one seems to care. I am frequently sent from office to office with no resolution. If you can get someone to be invested in helping you, it will go miles both logistically and emotionally.
Other disabled students: Know that you are not alone. There are so many of us and we all have tips and tricks.
These tips are Stanford-specific, but the overall message is this: keep asking. Know that the people telling you “no” have no idea what they are talking about. Trust your instincts. Ask for help, even if you aren’t sure you “deserve” an accommodation. Don’t take no for an answer unless you fully understand why that is the answer. I am not saying you should get everything you want – I don’t expect magic grades handed to me for no work, or a 3-month-long extension on a reading response, or someone to carry me around on a throne. I just want to go to school, do my assignments, and live in a place that is safe for my health like everyone else. You deserve that, too.
PS here is some info about some changes I am trying to make at Stanford. Click the tweet to unroll the thread and read all of them.
Just met with the disability access lawyer at @Stanford and department chairs are getting their first ever mandatory disability discussion during their winter training. It’s 15 minutes but I’ll take it! I am so so excited.
On September 24 I reached 3 years post-BMT. This is a milestone that I never really imagined for myself, and being alive years after receiving essentially a terminal diagnosis continues to shock me every day. That said, this past year was horrific and traumatizing in even more new ways. It seared into me an intense fear of living – of what could happen to me next, of truly grasping the soul crushing fear that comes with realizing that no one can take this pain away should it reappear. But before I address this past year, I want to set the scene. This is a note that was written for my disability accommodations last fall. This is everything that happened before this past year. This is how utterly tired I was when the scleroderma was only just setting in. Reading this note doesn’t ever stop shocking me, and I lived it. I just want to let it speak for itself.
For reference, I was in school January – June 2017, in New York City working full time in summer 2017, and back at school in fall 2017 (before leaving when I went into renal failure). This note ends in November 2017, one month before I went into renal failure and left school.
Hi everyone! People keep asking me questions like “where are you even living?” and “are you ever graduating?” and “what is even happening” and to be honest I haven’t been answering them because I have had the same questions. But now that the dust has settled I can say that I did end up going back to school and I am on track to graduate in Spring 2019 as long as I don’t need another leave. Maybe attempt 3 at my degree will be the one.
The past few weeks/months have had the usual ups and downs, but still an overall upward trend. My skin, liver, mouth, and eyes continue to drastically improve. However, for the past few months I have been struggling with nausea, vomiting, and increasingly quick weight loss. All signs of gut GVHD. At the same time, I recently started a few other medications that could make me nauseous, including imatinib and progesterone. So, I was in denial. But as it continued, my doctors grew increasingly uneasy. Finally, a few weeks ago I started to develop cramping that I knew I had only experienced once before – when I had gut GVHD three years ago. I cried that day, not out of pain but because every time I get one thing under control there is another. My life is literal whack-a-mole. Anyway, I had to go back up to 30 mg daily of prednisone, which has really helped. This is another sign that it was GVHD, since if it wasn’t the prednisone probably wouldn’t have helped. I really resent that it is helping because I don’t want to take it, but I do appreciate that I’m no longer nauseous/vomiting daily.
So, while this was all happening I moved back to school at Stanford. I was reassigned to the same apartment as last fall. Not just the same building but the actual room. I had a feeling this would happen because the building comes with carpet but they had to switch it for laminate/wood since carpet is a dust/allergen/mold risk for me with my compromised immune system. I really, really did not want to go back to this room. My lung function dropped below 60% in that room. My kidneys failed in that room. I thought I was going to die in that room. The last time I was in that room, it was the day I woke up sick and went to the hospital, where I went into acute renal failure.
I thought about asking Stanford for a different room, but I also knew how much I have struggled to get even basic accommodations from Stanford. When the chemistry department refused to excuse a single absence while I was literally under anesthesia for a bone marrow aspirate because my doctors thought my cancer might have returned, Stanford did nothing. It took me 6 months of emailing, meeting with the head of the disability department, and several meetings all the way up to the chair of the chemistry department before my grade was corrected. Last fall, when I showed up to my apartment it still had carpet despite my accommodations saying that it needed to be wood. I already had all of my stuff the day I arrived, so I had to move it all in. They replaced the carpet over three separate days and each time they did a section they completely disassembled that portion of the room and made no attempt to fix it. Keep in mind they are doing this for a student who is disabled. I called them after the first time and asked them not to do it again. They did it again the second time. I called again and asked them not to do it the third time. The third time they completely disassembled my closet (it is made of wire shelves/racks) and left all the pieces and clothes on my kitchen floor. So, given this history of seeking accommodations at Stanford, I really could not put myself through the exercise of explaining that this apartment induces PTSD symptoms for me. I would have had to explain it ten times to people who have no sympathy for me. I just can’t.
I will say that I am repeatedly surprised by how well I am doing. The day I moved back into my apartment, I told my mom that the room is REALLY far from the elevator. We got there and it is not far at all. Like, at all. I was just so incredibly short of breath last year that it felt like miles. It is weird because last time I went back to school (in January 2017) I honestly did not feel that well but was so optimistic and pushed through it. This time, I feel absolutely destroyed, but then repeatedly surprised that my body is doing fairly well.
I reached my 3 year BMT anniversary on September 24, which was also my first day back to school. I want to do it justice and share my thoughts about this past year. I also want to create a photo journal because so much of it is impossible to put into words. But these past few weeks I have been so overwhelmed by returning to school, the return of gut GVHD, and moving back into my trauma apartment. So, you’ll have to give me a little time.
I am learning to re-navigate school again. I love school, really. Like I enjoy studying. I know, I’m insane. Anyway, I am in the best part of my degree because I have finished my core requirements and am working on the upper division classes that I selected myself as my concentration (my major is Human Biology and my concentration is “Genetics, Immunology, and Precision Medicine”). So, this quarter I am taking child global health, a genomics seminar, immunology, and an intro CS class (my last general education requirement lmao). I genuinely enjoy all of these classes, but I am also struggling because I am learning about a lot of things I have experienced firsthand. In child global health this week, we discussed that protein deficiency is a leading cause of child death worldwide. A girl raised her hand and asked “How do we know it is protein deficiency specifically?” I knew the answer. Because protein pulls fluid from your tissue into your veins. If you are protein deficient your fluid accumulates in your abdomen. So your abdomen swells massively while the rest of your body is emaciated. I know this not because I have seen commercials of starving children, but because I lived it for 3 months while inpatient with acute gut GVHD. I was immediately back in that moment and I actually started to cry in class. I stared at my desk and reminded myself that I am not starving right now, that my gut GVHD is controlled even if it is back a little, that I am okay. I’m okay. But I’m also not.
I am leaving you with a happy image of this $120 blanket I bought at Anthropologie that I could not afford yet do not regret one bit. Look at this happiness it has brought (hi Chris)