This is what being sick looks like
I don’t like when people tell me to be positive. I am quite positive, generally. But pretending that being sick is this perpetual ethereal learning experience that imbues me with this magical understanding of life is not realistic. I am allowed to be upset. Most days being sick doesn’t bother me. Sometimes it makes me sad. Today is one of those days.
I am aware that I often don’t look sick. But this is what being sick looks like for me.
It looks like an entire cabinet full of oral meds, IV meds, ostomy supplies, PICC line supplies and miscellaneous medical stuff.
It looks like meds and epi at the bedside, always.
It looks like blown veins from poor IV access.
It looks like low blood pressure and tachycardia.
It looks like a medical alert bracelet.
It looks like a colostomy bag and swollen, hard, scarred abdomen during a bowel obstruction.
It looks like industrial strength equipment to take a bath.
It looks like pitting edema. (This picture was taken five minutes after I rolled up the sleeve over my PICC line; the impression stayed for hours.)
It looks like flushing even after 120mg IV solu-medrol, 100mg IV benadryl, 40mg IV pepcid and one dose of epi. (On top of daily meds.)
It looks like getting oxygen during anaphylaxis.
It looks like feeling like you’re winning when you get to infuse at home with your new PICC line.
It looks like needing IV benadryl in the middle of the night.
It looks like being grateful for a central line.
It looks like slow pushing IV meds.
It looks like weird rashes all over my body.
It looks like sharps containers full of reminders.
This is what being sick looks like.
Early arrival
I like summer in theory. I am always grateful when it’s not so cold and snowy anymore, but I quickly remember why I don’t like summer. Even years before I knew why, I knew that it made me sick. I spend a lot of it barricaded inside, with the relative safety of my air conditioner, but even my short trips outside cause trouble. I have had to be driven to work most days this summer and often took a cab or arranged a ride home. On days when I took the train, there was always the risk that I would throw up. Heat is so hard on my body. When I arrive home, I am sweaty and flushed and nauseous. It’s not my best look.
The weather in Boston has been cooler than usual for mid-August. Instead of blistering heat and high humidity, it has been high 70’s and breezy with clear skies. It is like an early September, a gift to those of us who can’t handle the heat. I have walked 3-4 miles outside each day this week. Today, for the first time since April, I took the train both to and from work, then took Astoria for a long walk. I sat outside as the sunlight waned and it was cool and blissful.
Fall is easily my favorite season. I like the symbolism of leaves changing colors and trees growing bare. I like watching horror movies every night in October. I like picking apples and going on hay rides. I like haunted houses. I like the coolness that creeps back into the air. I like wearing sweaters and boots. I like the smell. There is no smell quite like New England in the fall.
Every year, when I wake up on September 1, I am relieved that I made it through the summer. I often have fun during the summer, but I am always uncomfortable and exhausted. I have to expend my energy carefully, lest I push myself too far and need weeks to recover. In the fall, I take long, long walks, walk through the crowds of tourists in Salem, figure out a Halloween costume and drink my weight in Pumpkin Spice Lattes. (Which I don’t react to – more proof that autumn is the universe’s gift to me!)
People with mast cell disease are so often at the mercy of the elements, wind and water and sunlight. But when summer winds down, I get these months of feeling good, of not being exhausted, of not flushing. This is the one rule my disease has always observed – it gets to be unpredictable in every other way but this one. Fall is mine.
Maybe having mast cell disease sucks, but fall arrived in Boston two weeks early, and for me, that’s pretty damn great.
Astoria
I have been trying to adopt a dog for several months. There have been a few near misses, in which I was promised an animal, but they ultimately decided to give it to someone else. The most recent was earlier this week, when honestly, I was not particularly in the mood to be disappointed again. I have a really hard time when good things don’t work out because I look forward to them so much. When I’m having a really bad day, I think about these things to convince myself it will get better. So when it doesn’t work out, it is a serious let down.
Ten minutes after finding out I wasn’t getting the dog I was planning to adopt, I saw a new post on Craigslist. It was a rescue group needing a home for a black lab mix that couldn’t stay in her foster home. I sent an email saying I was interested. To my surprise, the rescue group contacted me right away and wanted to set up a time to meet the dog. I scheduled it and tried not to build it up too much in my mind.
I met the dog on Friday. She is two years old and has very long legs. She is quiet and likes to eat grass. She is very snuggly. Her foster father warned me that she would need some extra help with socializing and training because of all the upheaval in her life.
“Would you rehome an animal because they were too much work?” he asked.
“I require a lot of extra work and I’m pretty glad my family didn’t rehome me,” I replied. He told me I could have her.
As we were walking back to our cars, I told him that I liked her name. “I’m a writer, I think there’s some poetry to having a dog named Story,” I told him.
“Her real name is Astoria,” he answered. I smiled. Astoria is the setting of the 80’s movie The Goonies, one of my all time favorites. She was supposed to be my dog. I knew.
The energy boost you get from something working out just right cannot be underestimated. Today, I cleaned my entire apartment, did all my laundry, ran errands, cooked dinner and lunches for the next few days, walked Harry, and took Astoria for a thirty minute walk with my friend and her small children. I am very sore and tomorrow I will be exhausted but I am so happy.
After playing with my meds recently, I am finally starting to sleep less. I am sleeping mostly during the day, when I would rather not, but I’d rather ten inconvenient hours than the entire day. I am still very nauseous, but I am throwing up less. I am eating very small meals and having some success with that. I have made some sacrifices in other areas (in particular, I am in more pain), but I am okay with that.
I can deal with all the day to day bullshit if every so often, I get a big win. Today was a big win. I can ride this for a while.
Memory
I have this very clear memory that my mind revisits sometimes. I am jumping on a trampoline, holding hands, laughing. The air is cool but the day is cloudless, the sun glowing and slung low in the sky. I know I must be young because my hair is still blond corkscrews that stretch and wind as I jump.
In my mind, this memory is synonymous with ecstasy. I am weightless. I am in no pain. I am happy. The vision is silent, like I’m watching it through a looking glass. When I think about how I know it will all be fine, this is the memory my brain conjures for me, the one it plays behind my eyes. When I need to feel comforted and find peace, this is what my mind shows me.
This memory is an illusion. I know logically that it’s false. We didn’t know anyone with a trampoline on a beach when I was that young. I can’t remember whose hands I am holding because they aren’t real. There’s no sound because it never happened.
I fell asleep at a decent hour tonight and woke up because my leg hurt. Bone pain. It had been better for months, and now it’s back. It’s not a surprise. We have been screwing with my meds, I knew my pain would be worse for a while. It is prognostically meaningless. It just means I’m still living in this body and it still has mast cell disease.
And I think, well, if that memory can feel so real and never have happened… then maybe this isn’t happening either. Maybe I’ll wake up now to my real life with my functioning body and all the things I have lost.
Your mind has incredible agency when it comes to protecting you. It can shatter, solidify, suppress memories, rework them, whatever you need. It really is a marvel.
I think my mind built this memory from other true, good memories. The trampoline is on Yirrell Beach, near where my cousins lived when I was young. The dress I wear while I’m jumping is the one I wore in my first grade school picture. The sunlight, the salt I breathe in, the clear sky is every beautiful day I was ever grateful for. There’s no sound because there’s no need to talk. I have no worries, there is nothing I could need to know. As for who jumps with me, it could be anybody. It could any of the people I love and it would be an honor to hold their hands and celebrate together.
I think my mind made this after I got sick. I don’t remember when I started seeing it, but I know this last year I have seen it a lot. I think my mind made it so that when things seem very dark, I can remember this and feel better.
I think this is heaven. I think my mind is telling me that in many years, when I go to sleep and wake up healed and pain free, this is where I will be.
When I think too hard about this memory, I get this feeling in my chest that is reminiscent of nostalgia. It feels like I miss something, but how can I miss something that’s not real? And if I went now, I would miss everyone here. I never wanted to go.
I only ever wanted to be here with the people I love. Even if all of this is real. Even if the rhythm is really the throbbing in my bones and not a trampoline.
But I don’t think it is. I think at the end of all of this, I will open my eyes and be weightless under that clear sky. I think for now, I get to stay here with the people I love, and later, I will get to be free.
Mast cell allies
One of my friends from high school became a bone marrow donor this week. He signed up for a registry a while back and got a call that he was a match. Someone is going to get a new chance at life because he had the good nature to get swabbed and offer himself to someone in need.
Knowing that he did this moved me deeply, and not just because I know him and he’s a nice guy. Anytime I see people donating blood or platelets, I tell them, “Thank you on behalf of the rare disease community.”
We currently have a blood shortage in the US that is dramatic enough to require cancellation of many elective procedures in some cities. Donors who are type O-, B- and A- are especially in demand.
The Red Cross needs about 15,000 blood donations A DAY to sustain the amount used currently around the US. Blood can be donated every 56 days and platelets can be donated every 7 days. So if you’re looking for a way to help out the rare disease community, please consider donating. You can visit redcrossblood.org for more information.
Anyway, this got me thinking a lot about how much people like me rely on the good nature and willingness of others to help us out. These allies make our lives safer and easier, and they are truly the unsung heroes of the rare disease world. People tell me that they are moved by my tenacity to live life, but my tenacity wouldn’t get me very far without the help of my family, friends and coworkers.
So here’s a shout out to the people behind the scenes:
My sister, Kristin. I think that it’s harder to be my friends and family than it is to be me sometimes, and I think it’s probably harder to be my sister than anybody else. This past year has been one fast progressing mess and she’s always there to reassure me when my hair falls out and watch bad tv while I have a bowel obstruction. She brings me puzzle games when I’m in the hospital. Also, she has great hair.
My parents, Big Mike and Big Gail. My dad drives me to work most days (I’m still not strong enough to take the train both ways without reacting) and deals with the general nonsense in my life for me, like getting my car inspected and dealing with my air conditioner when it’s not working right. My mom listens when I complain about my life, hangs out when I need to use my Epipen, washes my dishes and is generally the best. They make sure I am awake for the important stuff so I don’t sleep through my entire life. 
My cousins and extended family. Just the fact that Matt and Jacqui just got married is enough to keep my mind good for a while. In all seriousness, you guys drive me around, make sure I don’t get my PICC line wet and accommodate me constantly even when I’m sure it’s annoying.
My dog, Harry P. Harry never judges me when I need to sleep all day or throw up a lot. If I am not feeling well, he puts his face in my face until I feel better.My friends, including, but not limited to, Alli, Cory, Margot, Alicia, Nichole, Ariel, Katie, Christina, Andrea, Tommy, Jimmy, Rob, Alyson and a whole bunch of others. These people all know how to use an Epipen and do lots of things that make my life easier.
My coworkers, who are amazing in the way they support me and make working largely from home possible for me. I have never worked anywhere with this level of compassion and I feel lucky to work there every single day.
In the way that it’s hard for people to relate to us in our struggles, it’s important to remember that the people we love have their own struggles with our illness. And even when it’s hard, they still love us and help us.
So to all our allies, I just want you to know: We notice you. We appreciate you. Thank you.
Seriously, though. You guys are killing it.
Boundaries
Alright, guys. I need to draw some boundaries.
I am pretty straight with you guys about my life and my health. There are some personal things I don’t share. I don’t feel that I should have to exchange my right to privacy because I write a blog where I answer questions about mast cell disease.
Being as the mast cell community is fairly small, a lot of us know each other. Mostly, we know each other online, which means that we often don’t have a complete understanding of the other person’s life and illness. There is a tendency to compare ourselves to each other, but this is inherently problematic for a bunch of reasons I don’t need to rehash.
I found out this week that a patient was upset that one of my providers wouldn’t let them do X thing and complained that it wasn’t fair because they know Lisa Klimas is allowed to do it. That really irritated me for several reasons. I don’t feel that it is appropriate for people who aren’t my health care proxies to talk to my providers about my care. If you want to tell them you read something on my blog, or tell them you know me, that’s fine. But when you are trying to include how I manage my healthcare in a conversation with one of my providers, it’s not acceptable. So don’t do it.
When you belong to a community like ours, we often develop a sense of intimacy with each other very quickly. In the real world, you develop intimacy alongside trust and mutual respect, but this online world of mast cell bonanza tends to move faster than that. What that means is that, unfortunately, not everyone understands the responsibility that comes with knowing this intimate information. Some people prove themselves to not be trustworthy.
I like answering questions. I like helping people if I can. I like writing this blog. You are not bothering me by asking me questions. But in the last couple of months, there have been a few instances where I have felt people were trying to take advantage of me. One person sent me a question in a Facebook message while I was in Seattle and then sent me a second angry message when I didn’t answer their question quickly enough for them. There have also been multiple times in the last month or so when I was publicly demeaned by a person online only to have them want me to answer their questions afterward.
Please keep in mind that I am a person. A sick person. I am happy to be a resource for people with mast cell disease and I don’t mind researching topics or whatever. I like doing that stuff. But if you are going to expect me to help you, you can’t treat me poorly. I don’t need anybody to kiss my ass, I’m just looking for general courtesy here. A lot of people can attest to the fact that I don’t mind answering questions in the middle of the night or calling people to explain things in detail. I don’t mind doing these things. I just don’t think I should have to do that for people who call me names. I don’t think that is too much to ask.
I’m going to be more vigilant moving forward about the information I share in the forums as pertains to my own care. I didn’t “get in trouble” or anything, but frankly I find the whole exchange of “but you let Lisa” to be really creepy. It’s not something I want to happen again, so I’m drawing some boundaries.
Please believe me when I say that it’s fine to ask questions and request blog topics. I hope you guys understand where I’m coming from on this.
Misfits
I have always been an outsider. As a kid, I was a wicked nerd. I read Star Wars books and was bored in school so I wrote fantasy stories. I got moved to the smart class and people picked on me. I wore weird clothes and mostly ignored people.
I eventually started developing an identity through music. I was a punk. I am a punk. And I belonged there, but there’s a caveat – it’s a subculture characterized by the fact that none of its members fit in anywhere. It is a collection of misfits who like loud music and don’t belong anywhere else.
I am fortunate to have a lot of close friends (who were also generally misfits in their younger years.) But having friends is not the same as belonging to a community. Like I have these friendships and I love these people and they love me, but there are some things about me that they can’t relate to. Like being sick.
When I found the mast cell community, I was ecstatic. These were people who knew what I was talking about. They knew about the weird taste I get in my mouth when I’m having a mast cell reaction. They knew about the rash I get when I take a hot shower. They got it.
It’s hard though because once you find this community and you feel like you belong, when you can’t find anyone else who has had the weird blood marker you have or whatever, the loneliness you feel is swarming, engulfing. It’s really not something I expected to feel again at this point in my life.
There are a lot of things about my health that I keep off the general internet that would turn some heads. In some ways, I am very different from most other people with mast cell disease. While I feel that I belong to this community, it further reminds me that I am just never going to fit into a box. I am always going to be an outlier.
And you know what? So are a lot of other people. These diseases are so variable that it’s virtually impossible to ever find someone exactly like you. The person I have found whose profile matches mine the best is 2 years old and calls her PICC line a tail. She has a different type of mast cell disease than I do and has a disorder I don’t and I have a few she doesn’t. So like I said. It’s virtually impossible to ever find someone exactly like you.
My favorite thing about being a punk was going to shows and standing in the crowd waiting for the music to start. You get this buzzing excitement in your head and your heart pounds and then when the music comes up, you’re screaming lyrics with a bunch of other people you don’t really know but who are your friends in that moment, and who don’t really fit in anywhere either but in that moment, you all belong together.
It occurred to me tonight that the mast cell community is pretty much the same. We are all medical anomalies who banded together under this spotted banner. We are all misfits and sometimes for a little while, we belong together.
The question I get asked the most
Whether or not SM is cancer is, by far, the question I get asked the most. Because I get asked so often, I have done a lot of digging on this topic in the last few months. Here’s what I found.
On the surface, from a biological point of view, SM looks like cancer. It is characterized by excessive, improper cell growth. It can cause organ infiltration and damage. Over 90% of patients have a mutation in the CKIT gene, which is a proto-oncogene. A proto-oncogene is a gene that becomes an oncogene when mutated. An oncogene is a gene that contributes to cancer. CKIT mutations can lead to gastrointestinal stromal tumors (GIST), melanoma, acute myeloid leukemia and, of course, mast cell disease. So if SM has unregulated cell growth and a mutation in a proto-oncogene, that makes it cancer, right?
The World Health Organization (WHO), an organization I generally consider to know what they are doing, says it doesn’t. To find out exactly why, I talked to a pathologist familiar with mast cell disease. This is what she said:
“All cancers are neoplasms, but not all neoplastic cells are cancerous. It is cancerous when the cells grow out of control. In mastocytosis, even if you do nothing (meaning take no medications designed to kill off the mast cells), most of the time, the prognosis is very good because the cells are not growing that much. Not like a cancer. The other thing is when the cells invade other organs and the bloodstream and damage the organs. When it is widespread and damaging, it is malignant.”
The majority of people with systemic mastocytosis have indolent disease, for which the life expectancy is normal, usually without any kind of therapy to kill off mast cells. So if we follow the guidelines laid out above, SM is not cancer. It is a myeloproliferative neoplasm (MPN.)
I know some people with ASM identify as having cancer. ASM has a lot more features we typically associate with cancer, so I think that’s fine. And MCL, obviously, is leukemia.
There is some terminology that gets thrown around incorrectly and I think it scares people who don’t understand that the wrong terms are being used. One of them is chemo. People with more aggressive types of mast cell disease may need chemo drugs. People sometimes use the term incorrectly to reference more common treatments. If you’re a rookie, I can see how you might get scared thinking that lots of people with indolent disease are on chemo.
Another term is compassionate use. Compassionate use is the use of an experimental drug outside of a clinical trial. It is generally allowed only when the person has no other treatment options and is gravely ill. I have seen some people use it when discussing patient assistance programs, in which a pharmaceutical company will distribute a drug to a patient at a significant discount or at no cost. They are not the same thing.
In the last few months, I have noticed that some people with SM will tell people that they have a “rare kind of leukemia.” This is not accurate. With the obvious exception of MCL, mast cell disease is not leukemia. SM is a blood disorder.
I think that part of why some people with mast cell disease say they have leukemia is because they want the sort of empathy given to cancer patients. I understand that. I wrote a whole post about how I hate when people say, “At least it’s not cancer.” But it’s important to remember that cancer has two entities: the medical, biological aspect of the disease, and the social construct. When you have ISM and you tell someone you have leukemia, their first thought is that you could die from it. Mast cell disease is scary enough with scaring everyone around you extra with misinformation.
I know that it’s frustrating that people know what cancer is and they probably don’t know what mast cell disease is. And to be clear, I’m not talking about an offhand comment you make to some stranger asking you why you have a port at the grocery store to get them to go away. I’m talking about the people who are actually in your life. (I’m also obviously not referring to the SM-AHNMD people, who may very well have leukemia in addition to SM.) If our mission is to educate people, stuff like this matters. The words we use matter. A lot.
I’m aware that this post is probably going to make some people angry, and that’s fine. You can feel however you want to feel. But I’m getting enough questions about this from people who are really worried, so I feel it’s important to set the record straight.
Okay or better
A couple of years ago, I found out a piece of really disturbing information that I felt I should share with a good friend of mine. I called him and told him I needed to talk to him. He met up with me right away. I told him and afterward, he said, “All of this is weird, but I’m not gonna lie, I thought you were gonna tell me you were dying.” We laughed about it and I reassured him I wasn’t dying.
One of the hardest parts of being sick is that the people who love you worry about you all the time. My relatives call me to check up on me a lot. My parents walk down to my apartment if they haven’t heard from me all day. My friends ask if they can help with me anything because they feel like they should be doing something.
I feel really guilty about this. I know that my disease doesn’t happen in a vacuum, that everyone close to me is affected. I wish that they weren’t, but I understand. When they are struggling, I worry about them, too.
Part of why I feel guilty that they worry is because I feel it’s unnecessary. I am well equipped to live with mast cell disease. I have excellent medical care from experts in my disease, I understand my disease, I have a strong support system that allows me to safely live independently and work full time. I have a lot of things working for me that many people don’t.
But even more than these things, I just know that I’ll be fine. I don’t know how I know, but I have the most distinct feeling that it’s all going to work out. On a cosmic level. I feel like all this pain is temporary. This feeling is not based on science or test results. It is deeper than that, more primal. It is true. I know it is true.
I know I’m sick, I know anaphylaxis is dangerous, and so on. I know all these things the way I know anything else scientifically – because I can review data and draw that conclusion. But this feeling is stronger than that. I think it’s the reason I am generally happy – because it seems silly to worry about this when it will all be okay. It’s how I know things won’t be hard forever.
So all you people who love me – try not to worry so much. If you need to worry, I will tell you. My life is difficult right now but it’s all going to sort itself out. I believe it. So should you.
“I’ll be okay. Okay, or better. It’s like my guarantee.” -Buffy Summers, Buffy the Vampire Slayer