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i’m going to have a life again


The end of February was one of those spectacularly awful periods where it seems like the entire world is conspiring against me. I woke up with sudden, severe back pain so bad that I literally got stranded in the middle of my bed for twenty minutes until the spasms stopped. My dog got into some not safe for dog food and got sick. It was bitterly cold. I felt like I was generally fucking up the lives of those around me just by existing. Not my best work.

In the middle of this, I told everyone about my decision on surgery. A few days later, I realized I could not say colectomy out loud with feeling this profound emptiness. I got the letter confirming my surgery date and pre-op/post-op appointments. I couldn’t even open it. I threw it into my filing cabinet and slid the drawer closed.

I am very strong willed. It’s not always a good thing. I can talk myself into doing anything if I feel strongly enough that it’s the right thing. I can talk myself into ignoring my fear, but sometimes fear serves a purpose. It protects us. It shows us where the line is, and what side we’re supposed to be on.

So I decided to take a little time and explore my fear and figure out its purpose. I didn’t talk about my health in depth or do any research or write about being sick. I focused on all the other parts of my life. I cleaned my apartment and cooked and worked and took care of Astoria. And I thought. I thought a lot about my life and my disease and this surgery and my fear.

When you are chronically ill, you are in a constant struggle to not have less. Less time. Less money. Less health. Less hope. You work so hard to make your life workable and any setback chisels away this richness of your life, takes pieces that you may never get back. That is what I am afraid of. I am afraid of less. I’m afraid that this will all backfire. I’m afraid that I should live with this pain and poor function. Because I know the space I have with this life, and if I make the wrong choice, I could end up with less. And sometimes this life feels so small, and how could I live with any less?

I am brewing an obstruction right now. I felt it on the train ride home, the pain spiderwebbing out from about an inch behind my stoma. Tonight, I ran a very hot bath to try and move things along in my bowel. I deaccessed my port and took off the ostomy bag and appliance and stepped into the water. I felt myself turning red as I lowered myself down.  I leaned back, resting my hands on my hard, distended abdomen.

I looked at my body, really looked at it for the first time in a long time. I saw the way my skin flushed and mottled. I saw the hives around my stoma where I react to the adhesive from the ostomy appliance. I saw my body struggling to digest. Is this more? Is this the best it will ever be?

I think it’s a blessing that you’re not forced to ever know the exact magnitude of the wrongness of any one decision. I’ll never really know if I made the right choice. I could choose to change nothing and in six months, something completely unforeseen could happen. There’s no way of knowing. I’m grateful for that.

My decision is already made. This sense of loss is normal. This fear of less is normal. And at the end of the day, I am not built for caution. I’m just not. I can’t live with less because I’m scared when there is a chance for more.

I walked around for several minutes after I got out of the tub, just me and no devices. No dangling port access. No occlusive dressing.  No ostomy bag.

It felt alien. And maybe a little bit like hope.

The fullness of time

It is so easy to lose yourself when you are sick. In the beginning, you are two beings, you and your illness. Together but separate. Independent.   Slowly, you bleed together. And then one day you are contained in this diseased vessel and everything is harder and you can’t get out. Every choice you make, every tiny decision, matters. Everything has consequences.

I have been mulling my GI surgery for several weeks. This is such a nuanced situation. Each solution has its own consequences. None of the options are benign. I always made my health decisions right away. Whatever my gut feeling is, that is my decision. Then I spend a few weeks justifying it to myself and making myself feel better about it. It’s sort of a weird quirk of mine.

That didn’t happen this time. I think about it all day, every day. It makes everything else seem more difficult, this looming decision and impending consequences of my choice.

I am terrified that I will choose wrong and the consequences will harm me. I’m also terrified that what I didn’t choose could have helped a lot. It is hard to know, especially for someone like me, with multiple unusual conditions, and big dreams. I count my big dreams as one of my conditions, something that must be accounted for. I have to be able to live with my choice.

After much research and discussion with my relevant specialists, I have decided on a surgical option. I am having some tests repeated in a couple of weeks, but they are merely to confirm what I already know. Almost exactly two years after I had my colostomy placed, I will be having the entirety of my colon removed save for a little bit of salvageable rectum. My small intestine will be connected directly to the rectal tissue and my ostomy will be reversed. If this fails, I will have a permanent ileostomy and accompanying nutrition problems for life, made worse by the fact that I can’t eat many of the foods used to mitigate this issue.

In the fullness of time, all your choices either fade into the ether or are absorbed into your being.   If I choose wrong, it will become a part of me or become insignificant. Nothing is absolute. These choices become part of the constellation of our lives and you can follow the stars all the way through the story.

I wish everything wasn’t so hard right now. I feel like I am in the middle of a raging storm, the kind you get in New England summers, when the humidity is too much and the sky unleashes it. I’m standing in the downpour, lightning whipping and thunder crashing around me. It is awesome and terrifying. It feels like change.

And I’m scared. But I’m still here.

2014: The sum total

One cold and bleak winter.

One insurance change.

One breakup.

Two central lines.

Three new scars.

A bunch of appointments at the ambulatory infusion center.

51 infusion nursing visits.

48 dressing changes.

32 lbs of steroid weight gained.

One best friend who had a medical emergency and recovered amazingly.

One new niece.

One unexpected hospital admission.

One ambulance ride.

Eleven self administered epipens.

Twenty one days for which I could stand up for less than thirty minutes a day.

One bachelorette party in Maine.

One lounge night of 40’s music.

One trip to Seattle where I learned that I still had magic inside me.

Two and a half days in Portland.

Two weddings.

One new cousin.

One bridesmaid dress that just fit with the steroid weight.

2400 hours (100 days) spent infusing.

Three invasive procedures.

One trip to Water Country on a very hot day.

One new dog.

280L of D5/Lactated Ringer’s.

710 saline flushes.

230 sharps put into the container.

One roadtrip in a convertible.

Two days of apple picking.

100 squash eaten.

2000 lbs of potatoes mashed with butter.

One trip to Disney-on-ice with my nephew.

One trip to Salem around Halloween.

One less well loved hippie in the world.

One friend started midostaurin.

One pumpkin carved.

Dozens of times I felt like I was connected to the heartbeat of the world.

Two new pair of glasses.

Dozens of new squash recipes.

Zero coffee-mate due to its not being low histamine.

114 medical appointments.

97 days on the hospital campus.

7,665 pills taken.

Two new diagnoses.

Twelve bottles of liquid Benadryl.

7500mg of prednisone.

3160 ampules of cromolyn.

110 doses of IV Benadryl.

300 ostomy changes.

600mg of ketotifen.

One drug that helped a lot that I really thought wouldn’t.

Eight weeks of liquids and soft solids.

One white count normalizing.

One iron count in normal range.

Five weeks of feeling better.

One surgery planned for 2015.

10 lbs lost.

Four flights.

Five days in Colorado.

Several nights of crying to my friends.

More laughing with them.

60 times my father drove me to work.

Two times I needed to use IV meds after I drove myself somewhere and had to get a family to pick me up and drive me home.

Millions of times my friends and family helped me out.

272 nights I slept.

365 days I woke up.

Two obstructions after starting IV therapy.

365 days of immunodeficiency.

73 yoga practices.

75 researchers educated on mast cell disease.

42 health care providers educated on mast cell disease.

102 people I taught to use an epipen.

One person I talked through their first epi.

Hundreds of people met with mast cell disease.

Many new friends that make living with this a little easier.

One new website.

252 blog posts.

52 countries with MastAttack readers.

10,000 questions answered.

One big plan for 2015.

One year of living and not just existing with mast cell disease.

Winter, the dark.

I am not a summer girl. I never have been. Years before the heat made me sick, I would look forward to fall and the smell of fallen leaves and the way they crunched underfoot.

Summer was never for me. It was just too bright.

September and October are my favorite time of the year. I am a Boston girl and I love everything about New England autumn. I love the way the light looks icier, bluer coming through the trees. I love the feel of chilly air on my cheeks as I walk through the city. I love opening the window at night and falling asleep to the scent of frost. I love Halloween. I love watching scary movies every night while I write in my journal. I love the way bare tree branches silhouette against the swollen harvest moon.

I love all these things; but I still feel the coming dark.

I get very introspective in the fall. For the rest of the year, I look forward, move forward, but in the fall, it seems I can only think back. Festive October gives way to cold November nights, to bleak Decembers, where the horizon swallows the sun before 4:30 and everything tastes like regret. I write a lot about life, about my past. I wonder about the moments that my life hinged upon, about who I would be if I had turned differently.

I like my life. It’s just that the darkness makes the past seem so large. It unlocks in me this door to melancholy and it unfurls around me, splendid and devastating.

Depression is an organic process of mast cell disease. It is part of the disease, not a side effect of living with a chronic illness. I know that these racing thoughts and weariness with the world are from masto. I know that I’m not really hopeless on the bad days, but it doesn’t matter. By the time December is half over, I don’t even think I can tell the difference.

Tomorrow is the shortest day of the year. Then the light will return.

There is beauty in the darkness. It’s just so cold here.

Future realities

I love data. I love scores, charts, trends. I collect information, categorize things, make lists. I love data because it’s not malleable, not mutable based upon your current reality. Data does not lie.

I keep track of my life in a little red binder. I record various data in color coded ink. When I woke up and what symptoms I had when I did. What time I took my medication. What I ate. What I thought about. How much pain medication I needed, if I had IV meds, my IV fluid volume. I draw my yoga routines in soft violet curves, map the routes I took to walk the dogs. And at the very bottom of each page, a hand drawn table, double lines under the header, my most important tool in tracking my health.

There are three columns: symptoms, score, notes. I might skimp on other details (on terrible days, I sometimes just write NOOOOOOOOOOOOOOOOO across the page), but I fill out this table every night. I have been doing it for almost three years. Every night in bed, I score my symptoms: nausea, vomiting, GI motility, flushing, hives, headache, GI pain, bone pain, other pain, energy level, sleep. I record how bad they were out of 10. Indelible. Immutable.

Last month, my doctor called me to discuss options for dealing with my ongoing GI issues. They all sounded really stupid. I told him they were sounded stupid. But I’m out of options that don’t sound stupid so I tried the one that seemed least likely to harm me while probably doing nothing. It has helped a shocking amount. I sleep at night. I’m not exhausted all day. I don’t have to brush vomit acid out of my mouth several times a day. I can do yoga regularly. I can cook. It makes my bone pain worse for some reason, but frankly, I don’t care. The global improvement in my symptom profile is that dramatic.

I started a liquid/ soft solid diet in October. I mostly eat pureed vegetables and protein drinks. I drink a lot of bone broth. It is boring and annoying and sometimes upsetting, but it is definitely working. I have been adjusting medication for months, trying to find the balance between coverage and not sleeping for 20 hours at a time. With the gut rest afforded by my easily digestible diet and the addition of this new medication, I seem to have found a working combination.

I saw my doctor on Tuesday. For once, we shared good news. My biopsies were mostly clean. My bloodwork is better. I will need surgery to have the (has no function, hurts and bleeds all the time) end of my GI tract removed, but this is not surprising. I am doing better. A lot better.

The thing about reality is that whatever one you are living right now feels like it has been your reality forever. When you have a bad month, you can’t remember the last time you felt good. When you feel hopeless, you can’t remember life without smothering darkness. Your current experience colors all your other experiences. It makes your present situation seem bigger and heavier and more permanent.

A year ago, I was living the darkest, coldest part of my life. Every day was a struggle. Every minute was a struggle. This was a year of telling myself every minute, “You can do this. You can do this.” Even when I was sure I couldn’t. Even when I felt hollow, my very life force long since sapped away.

But now I can line up the pages of my binder and flip through them. Like an old cartoon, a story appears: the numbers in my tables go down, and I get better. Data doesn’t lie.

I don’t know if this will last. I don’t know how hard it will be to recover from surgery. But it doesn’t matter. Right now I am packing to go to Colorado this week and going to Disney for New Year’s Eve and studying for exams and making big plans that I hope to share soon.

A year ago, I could never have believed that I would feel like this now. I am healing my body. I am recovering my life.

There is no limit to the things we can do. Reality is temporary. There is always a future. There is always the possibility of new realities.


I scanned Astoria’s medical records today to send them to my vet.  As I was removing the papers from the scanner, I caught the name of her previous owner.  For some reason I can’t really explain, I decided to look this woman up. 
I saw pictures of Astoria as a puppy, with captions that clarified some of her history.  She was indeed rescued from a Southern shelter as a very young puppy.  Story lived with this woman until the spring of this year, when she felt she could no longer keep the dog and planned to give her to a shelter.  Astoria’s trainer offered to keep her until a suitable owner was found.  I brought her home last month.  I am in her fourth home in two years.
Every time I go out, Story thinks I am never coming back.  She hangs her head and follows me around when she can tell I am leaving.  After I’m gone, she pulls down the covers on my bed and lay in my spot.  If I’m home and there is a closed door between us, she paws at the door and whines. She wants to be close to me all the time.  Every time I come home, her body vibrates with the intensity of her relief.  It is strange for me to think that she is still wondering why this other woman never came back. 
She is triggered by odd things and it frustrates me that there is this history I don’t know.  She lives around these limitations, but she is still scared.  She does not believe that I will return until I do.  I think she will eventually trust that I am her person forever and I will always come back.  I think someday her past will not hamper her spirit.
My health has been bad for so long that it started to feel like my body didn’t have any good days left in it.  I woke up this morning typically nauseous and sore.  I took a handful of pills with my coffee before disconnecting my overnight infusion from my port.  I knocked all my makeup off its shelf and was gearing up to fight through another difficult day.
As I was walking out the door, I realized I wasn’t nauseous anymore.  It was a cool and breezy morning and it smelled like frost.  I went to work and had a really pleasant and productive morning.  I had forgotten my lunch so I took a chance on a salad from a restaurant down the street.  I ate it at my desk in case I needed IV Benadryl.  But I had no reaction.  I felt totally fine.
I worked a full day and got a lot done.  I was able to share with my coworkers the success of a child on midostaurin, a Novartis clinical trial drug for Aggressive Systemic Mastocytosis.  They were so excited to hear the personal impact of one of our drugs.  After work, I got a Pumpkin Spice Latte at Starbucks and took the train home.  My train was delayed for twenty minutes in a train tunnel for some reason and I didn’t even care.  I didn’t have any bone pain or joint pain.  I had no headache.  I wasn’t short of breath.  I wasn’t flushing.  I wasn’t bowel obstructed.  I wasn’t nauseous and I hadn’t thrown up all day.  I was still a little sore from the port being placed but it wasn’t bad.  I walked between stations rather than switch lines, drinking coffee as I navigated the sunny Boston streets.  It has been a long time since I walked around my city without having to sit down every few blocks.
When I came home, I found that Story had unrolled my yoga mat and was literally doing upward facing dog on it, so I thought, why don’t I do some yoga?  So I unrolled my other mat (because Story was still laying on the other) and did a good 40 minutes of yoga for the first time in a long while.  I brought her out to the yard to play with Harry while my friend came over to give me a massage.  And of course, that was super pleasant and I felt very relaxed when she was done.
I took Harry for his usual ten minute walk around the school yard and as the first stars were coming out, I walked down to the beach with Astoria.  For once, she wasn’t pulling me all over the place and was happily killing a stick as we walked.  We walked the length of the beach in the chilly night air and when we got home three miles later, I felt tired but otherwise fine.  I drank my can of Coke while reading a paper on mast cell biology.  I took a hot shower, which has recently become a lot more pleasant due to no longer having to cover the PICC line.  When I face into the water, I just hold a face cloth over the accessed port.  When I’m done, I just wipe it off with a towel.  It is seriously the greatest.
I took my night pills and opened Netflix on my computer after crawling into bed.  As I looked through new arrivals, I saw a documentary I have been wanting to see.  I put it on and pulled out my other laptop to write this as I snuggle under my heated blanket.
It is now after midnight, so I’m no longer worried that I will jinx it by saying: I had a perfect day.  I somehow, after all this time, and all this pain, had a day where mast cell disease did not affect my life at all.  I had a day with a really great Cobb Salad and yoga and a walk down the beach and a massage and getting to remind my very hard working colleagues on behalf of the mast cell community that what they do can save lives.  I am optimist because I don’t think there’s any other way worth being, but I have to admit that I was doubting whether or not I would see a day like this again.  Sometimes you get what you need. 
Someday Astoria will have a perfect day, too.   Someone will bounce a ball off the ground for her for hours so she can catch it and then a dog will play chase with her somewhere where she can roll around in the dirt.  She will get to pull all the stuffing out of a stuffed crocodile.  Then she will eat several cookies, and when I go to work, she will know that I will come home. 
We both live with these damaged spirits, but I’m starting to believe that maybe they don’t have to be damaged forever.  Because when I have a day like this, I realize it’s still there, as full and as vibrant as it ever was, and I know at once that it is inconquerable.