Despite the hope-springs-eternal vibe on my New Years/ CALR-versary post five months ago, things have still been kind of intense this year. First of all, I don’t know what I was thinking in short-sightedly wishing not to meet my health insurance deductible in 2024. I met it ($4K) by mid-April.
Three months ago I experienced a traumatic incident, at the start of what was meant to be a relaxing vacation. Note: sharing this story deviates from my blood matters but I’m going to go ahead. Similar to my health journey, I would like people close to me to understand what I experience, on a topic that doesn’t lend itself to just casually explain in passing, and the writing process is therapeutic for me. You can bypass as you prefer or need due to the topic, and catch up on my blood matters below.
Click here to expand story – strong trigger warning for suicide
March 3 was a Sunday, it was about 10pm and the airport was quiet. To get to the Uber you had to follow some instructions to get to the parking garage where they had the rideshare pick-ups. This included going up a floor or two and crossing a skybridge.
When I got to the skybridge it was pretty empty. However my eyes immediately fell on a blue backpack sitting on the ground. My brain went, I think this isn’t good, this is not good, right? I found a person standing on a short ledge adjacent to the skybridge. They had climbed over the railing and walked around some pigeon wire to the end of the ledge, which was maybe 5 meters (15 feet) away from where I stood. They were looking down quietly.
I looked around, I think I needed more confirmation, to see if anyone else saw what I was seeing. Some people like airport employees with people in wheel chairs were just going about their business. Other passenger people just kept walking with their suitcases. There weren’t many people, but there were definitely some, and I don’t know if they didn’t understand what was going on or just didn’t want to.
My brain realized it definitely was a problem anyway. I called to the person on the ledge while also trying to get other people’s attention to try to help me. A guy stopped with his luggage and joined me. We pled together to the person to come and talk to us. A third guy started calling 911 while we were trying to engage with the person.
The person on the ledge turned to address us, came back a little bit, but to clearly indicate they did not want our support. They turned away again, resumed looking down, and took off their coat. My brain knew was very bad because I immediately understood they did that to eliminate air resistance. By this time, people were noticing, stopping and standing around us watching what was going on. It pains me deeply to say some people were filming.
When the person stepped off, I had the most profound experience of humanity in my life. The moment it happened, the other guy and I did the same thing in tandem. We turned to each other simultaneously instead of watching, looking in each other’s eyes and holding onto each other. We clung to ourselves, crying, while repeating, we tried, we tried our best, we did what we could, while the screams of the others on the skybridge and then below took over and the third guy told 911 it was done. We connected deeply as strangers in a terrible united circumstance, both trying to console one another and ourselves. I can still see his eyes looking into mine, hear the chaos, feel all the commotion thereafter.
I did look down finally because also I kind of knew it was useful to my brain to confirm. The person looked peaceful, like they were sleeping in the fetal position. A pool of blood slowly emerged around their head like a halo. I spoke to the police later and through communication with the family I now know the person’s identity and some of their backstory. How that happened and what I learned about the person will remain private. They were young.
I realized through my shock that my Uber driver was blowing my phone up wondering where I was. Everyone was going crazy on all the floors of the airport now, and stuff was happening down below around the person. I felt like there was really nothing left for me to do there, and I hated seeing all the people now gawking and recording the aftermath.
At a loss of anything else to do productively, I just grabbed my suitcase, crossed the skybridge, and found my Uber. My regret is not getting the contact info of the guy who shared the experience with me; I wonder frequently how he is doing. I apologized to the Uber driver for being late, and he said I seemed out of breath. So I told him what happened and he was like, whoa, would you like me to stop at the liquor store? Lol, a very Vegas response.
It was surreal to all of a sudden be on the strip amongst the big casinos and all the gambling and partying, while my brain was dealing what had just happened. Javi was literally onboard a Netflix party bus with other journalists at the time so it was also jarring for him to encounter my unexpected grief. I remember being on the phone with him in the Uber with him saying, I don’t understand, and me saying (possibly shouting), it doesn’t matter you don’t understand.
The next morning we picked up our rental car and went on our roadtrip as planned. I downloaded a Tetris type game on my phone, because I remembered some scant research that it could help processing immediately post-trauma. I played it constantly in the passenger seat while Javi drove, rotating between the game and looking out at the magnificent landscapes as they shifted. I believe playing that little game did really help me, as did the road trip and our time spent among nature, bigger, older, and more powerful than us all.
Six days later we completed the trip, which ended in return to Las Vegas and leaving from the same airport. I decided to make time to purposefully return to the skybridge and show Javi where and how it happened before departure. I believe that the exercise of returning to the scene at a different point in time, going through the event, and sharing it with my closest person was also very helpful to my processing. It marked some closure to the experience as we returned back New York, work, and regular life.
Three months later to the day, I feel like I have been coping with this well. I have not had any nightmares, though I was afraid of this since the first night. A few unexpected incidents have triggered a PTSD-like response – the NYC earthquake, a person screaming their head off outside my apartment, a kid almost getting hit by a car a couple feet away from me on my bike, a construction worker dropping a large piece of metal making a big noise. It makes sense because my brain was again jumping to, Is this a problem? Should I do something? and brought me right back to the backpack on the skybridge. My waking flashbacks, which at the beginning were very strong, seem to be decreasing in frequency smoothly.
I am truly proud of myself that when I encountered a true emergency, I did act. I did not flee or freeze, I fought. Though unsuccessful, I did what I could to encourage this person to stay in the living realm with us. They didn’t want that and I am at peace with what happened. Though, I will not forget this person, their story, and what happened on that skybridge that night. This is the type of thing that will never leave me, nor do I think it should.
In telling some people about this, I’ve had some beautiful moments of sharing on suicide, ideation, attempts, and/or loved ones lost. It opened up deep discussion and connection on a stigmatized topic. I am grateful for that opportunity. Similar to my blood matters, I am no longer afraid to confront what may be challenging, raw, painful, or normally kept private.
I share this random experience on this blog, which was intended only originally for my illness reporting, because I want to open/normalize experiences in life, death, and the suffering that so many people encounter while existing. These are topics that are not talked about enough. In my view, stigma, secrets, and shame are a major part of the problem about illness (mental or physical), isolation, grief, etc. Please know I am here to discuss any aspect of this topic at any point that may be helpful to you in your own life.
Now…. back to the regularly scheduled programming on my blood matters.
This year my eosinophils have continued to be variable but always high. My doctors decided to put me on a biologic medication called Mepolizumab. Mepolizumab blocks a key signaling protein that is involved in eosinophil activation. I did my first monthly self-injection May 7 with oversight from a nurse.
It looks like an epipen, which I also got two of just in case of rare side effect from my injection. It wasn’t rocket science, you just have to stab yourself with the pen in the stomach and then hold it there for like fifteen seconds to make sure it all goes in. The holding it in was the creepy part. The injection site just hurt for a couple hours after but it was tolerable. My second injection will be in a few days and I’ll do it on my own at home.
The medication comes couriered to my house from a special pharmacy in a big refrigerated box on a pre-scheduled date and time window and I sign for it. It was definitely a process to get it. A bunch of red tape, a bunch of preliminary and follow up calls/check-ins, from nurse, pharmacist, schedulers, insurance, and the drug company itself, a few associated mistakes/confusions causing delay and requiring my follow-up, and a monthly process of these things that will continue.
The med needs to be consistently refrigerated, I guess because it’s live, biological material. In the future if I am away from home for the date of my injection, I will have to get it delivered in advance, carry it with me in a cooler at the correct temp, and bring docs for security and customs. I did manage to self-advocate towards timing my first injection to avoid my upcoming Spain trip because I don’t want to deal with that for this summer.
Last week I went to my hematologist-oncologist and got my counts again. I was expecting a decline in the eosinophils but not necessarily as resolutely as I got. For the first time in five years, my eosinophils are normal (normal range of % is 0-5% and normal range of absolute count is 0-.45). Mepolizumab got the job done in less than three weeks from the first injection. My doctor and nurse celebrated with me as did my family on our group chat.
Downside of Mepolizumab seems to be to be a lowered immune system. I got a cold on May 14 which turned into Sinusitis (sinus infection) and I am still struggling with the infection and upper respiratory symptoms. Tomorrow is week four of being sick and day 7 of antibiotics and my symptoms persist. Perplexingly I’m developing an infection in my finger at the same time. The special pharmacy and my primary care doctor were like, oh yea, biologics can lower your immune system. However this was not at all mentioned in my many calls and appointments in preparation for my first injection. Go figure.
I got an ultrasound on my abdomen a few weeks ago because I’ve been having some symptoms there. I reported growing discomfort in a particular region (they call it RUQ – right upper quadrant). The scan showed my liver, which is the main thing in that region, has grown 2.6 cm as compared to my last scan but is still officially in the range of normal. Also my spleen is still measured in the range of normal, but they are both borderline. This past appointment my hematologist did feel enlargement in the RUQ for the first time.
I am having more symptoms of night sweats, fatigue, inactivity, concentration issues, itching, and abdominal pain this year as compared to last year. At first Javi was tracking my night sweats on our fridge calendar. I did not like looking at it every time I go over there. So I downloaded this MPN symptom app to track them in a place I don’t have to look at all the time. Interesting but I guess not surprising a lot of the support resources for patients are from pharmaceutical companies.
My hematologist-oncologist is currently considering what they call my MPN symptom burden. Symptom burden increasing can mean that the MPN is progressing. I may need additional treatment lines to alleviate some of the symptoms and slow the progression of my illness. Additional treatment is a calculus because it comes with additional side effects that can also lessen quality of life.
Later this summer the plan is to check in with my symptoms, as they could improve with my eosinophilia under control. Otherwise I’ll probably get rescan of the abdomen, do another bone marrow biopsy to see if anything has changed there, and maybe consider going on an interferon. As the name suggests, interferon is meant to interfere with the disease progress.
An upsetting thing happened in April (much less than the earlier story, I promise) when I was getting my blood drawn for my counts. I casually asked the phlebotomist if I should ever use the other arm, as I always give them my “good vein” on my left arm. The phlebotomist, mid-blood draw, was like, yes you definitely should use your other arm if you can. Your main vein here is way too scarred to use, so I have to use the little vein. I realized I had noticed the past few times the mark being in a different spot on the inner elbow. The idea my good vein was scarred potentially for good sent me into a mental panic spiral. Appropriately, that particular blood draw was the most painful I’ve ever experienced, aching for hours afterwards and requiring icing.
Upon my own research, I learned there are some basic principles about saving your vein health. I watched a lot of Intervention and am familiar with IV addicts destroying veins, but was ignorant this could happen through non-sketchy practices. Of course no one ever warned me of this, while I presented the same vein blood draw after blood draw, because I was told at some point that one is the good one. It was only me randomly asking a question to a random person, where I learned it something that would have been important to be told earlier on this journey, before the scarring occurred. So it goes.
On the past most recent draw, I provided my right arm. They also used the little vein and it left a bruise, but wasn’t painful like the last. I’m not sure if my right main vein is not useable as well as the left, or the little one on the right side is just preferable to the main one, or what. I don’t understand that and don’t know who to ask about evaluation of this, but it seems above the phlebotomist pay grade. I forgot to ask my hematologist in the last appointment due to all the other discussion. So I will try to remember for next time. Someone told me online to ask for “ultrasound guided draws” moving forward. That seems very insane/impractical for how often I need them, but I don’t know.
I’ve recently been needing to be in touch with a lot of entities about my health. It’s frustrating for me especially when I’m not feeling well with this lingering infection. In the past couple days for example, I’ve needed to make extra contact with my hematologist-oncologist, pulmonologist, psychiatrist, primary care physician, dermatologist, specialty pharmacy, regular pharmacy, on various matters all by myself, tell them what the other is saying, request medical records shared, authorize people to speak to each other, specify I have records that need to be compared, correct mistakes, accept mistakes, reschedule based on their availability, etc.
The doctors are not all in the same system communicating together or reading each others’ documentation. They each have different professional perspectives on limited slivers of my entire health pie. I keep thinking of other people who may be less healthy and/or savvy in how to self-advocate, communicate effectively, and navigate complex administration systems to get the health care they need. I literally have two advanced degrees in administration, two decades of related professional experience, and a reasonable amount of “spoons” per day. But I still feel like I can’t manage it all some days.
I know this is not the most uplifting update. This is life and it’s what I have to share. I guess I cannot end every post with some kind of optimistic send-off like my last one. It’s not always realistic that everything is will be tied up nicely in a hopeful wish including an exclamation point for extra positivity.
But. I thank you. For reading, encouraging, supporting, and caring. About me, about others in your life, about strangers, about yourself. To me these connections between us, whether fleeting or long term, are the very best thing that life can offer. ❤
my blood matters 
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