Tuesday, October 27, 2009


i have not had a lot to say lately. my health went waaaaay down south after the conference, though i think that was more related to my trying to taper off one of my meds than anything. apparently not a good idea. nothing feels worse than having a hardcore relapse, especially when you've been feeling moderately ok.

otherwise things are ok. i cut my hair short and dyed it purple and black, i decided i needed a change and i love it.

also for halloween this year i am going to be a skeleton, specifically one of those mexican day of the dead skeletons. it's a pretty neat costume that involves coating myself in black and white greasepaint and crystals. i like halloween a lot, i like costumes a lot in general. i like the opportunity to step outside of who i am, even for a short time i guess.

the conference itself was good. i was surprised at how comforting it was meeting so many other people dealing with masto...and i was duly impressed with how many of them seem committed to living their lives to the fullest...i felt sort of inadequate in comparison. i gave a presentation which was well received (though to be fair i spoke after a hematologist who told us we all had cancer - check the TMS page for the board's rebuttal on that one) and all in all i had a good time. i learned some, but i sat out the panel discussions that i thought would either stress me out too much (osteoporosis) or ones that didn't apply (mcad/pediatric stuff)

people eat a lot more food than i do. which is not to say i'm skinny, cause i'm not. but my diet is really really limited, and a lot of that has more to do with my sense of fear than anything. food and anxiety are my top triggers. so one of my goals is to try to expand upon my diet somewhat.

otherwise i am not too sure what to write about. i did a urine histamine for dr castells last week that came back as -12- so i'm guessing there was some sort of error there since last time i did the test it was 600. i'm still waiting on my tryptase and all of that good stuff.

Sunday, October 4, 2009

for those visiting from the mastocytosis conference

The following is a copy of the relaxation script i use for procedures where anxiety might be an issue or where i don't want to use painkillers. i mentioned this during my little presentation

Now what I want you to do is show you how you can use your imagination
to enter a state of focused attention and physical relaxation. If you
hear sounds or noises around you, just use these to deepen your

On one, I want you to do one thing – look up.

On two, do two things – slowly close your eyes and take a deep breath.

On three, do three things – breath out, relax your eyes, and let your
body float.

OK let's begin. One... two... three.

That's good, just imagine your whole body floating, floating right
now, each breath deeper and easier. Right now I want you to imagine
that you are floating somewhere safe and comfortable, in a bath, a
lake, a hot tub, or just floating in this space, each breath deeper
and easier. Notice how with each breath in, you let in a little more
comfort, and with each breath out, you let a little more tension out
of your body... as you let your whole body float, safe and
comfortable, each breath deeper and easier. Continue breathing
deeply, remaining in this state of calm focused concentration. Now
this is your pleasant place to be—safe and sound. So just spend your
time being wherever you would like to be.

Now, if there is any tension or discomfort in your body, you can
notice it, but then transform that sensation. If you feel some
discomfort, you might find it helpful to make that part of your body
feel warmer, as if you were in a bath. This warmth becomes a
protective filter between you and any distracting sensations.

If you have any discomfort or tension right now, imagine that you are
applying a hot pack on it and see what it feels like. Develop the
sense of warmth to filter any discomfort out of the distraction.

With each breath, deeper and easier, your body is floating still,
feeling more and more comfortable with each breath.

OK picture in your mind a screen like a movie screen, TV screen, or a
piece of clear blue sky. First picture a pleasant scene on it. Now
picture a large piece of blue screen divided in half. All right, now
on the left half, picture what you are distracted by on the screen.
Now on the right half, picture what you will do about it, or what you
would recommend someone else to do about it. Keep your body floating
and if you are distracted notice the distraction, but your body and
mind can still float comfortably. Good, you know that whatever
happens there is always something you can do But for now just
concentrate on keeping your body floating and feeling comfortable,
safe and sound.

When finished say – OK, it's time now to come back to the outside
world. We are going to leave this state of trance by counting
backwards from three to one. On three get ready, on two with your
eyes closed roll up your eyes, and on one let your eyes open and take
a deep breath and let it out. That will be the end of your trance
experience, but when you come out of it you will still have the
feeling of comfort that you felt during it. Ready, three – get ready;
two – with your eyes closed roll your eyes up; one – let your eyes
open and take a deep breath.

Tuesday, September 15, 2009

on support groups

i posted this to one of the masto lists in response to someone asking essentially, "well if i get diagnosed, that doesn't really make things better does it?"

and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.

but then, in life, when are there?

Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.

When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.

I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.

So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.

So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though

Monday, September 7, 2009


So what are you planning in terms of this fall's flu season since it's apparently going to be harsh? Getting the shot? Not getting the shot? Fill me in!

couple things

This year I'm speaking at the annual TMS Conference (come see me be witty and mock pics of me getting my bmb!), and in addition I'm going to be taking part in some walk-a-thon fundraiser thing too. i feel like this is almost more important in light of the fact that a young woman recently passed away from mast cell leukemia (the worst variant of this illness) and it's really thrown me for a loop. i've only been "sick" for a couple of years, but aside from the 83 year old guy I mentioned in an earlier post, or Christopher Reeves (who had huge comorbid issues to contend with) this is the first time i've heard of someone dying from this. She was close to my age and it just frightens me. I think I'm almost more frightened since for whatever reason I can't determine I've been having shocky episodes lately. The timing was bad I guess (not that I really have any right to complain in this situation, as I only have ISM)

here be the link if you feel like donating:


it is, as always, appreciated. I feel sort of stupid posting this here, but in case any of you are not involved with the TMS or hadn't heard of the fundraiser, it's worth a shot at least.

someone posted some information on masto and the diagnostic process, so i figured i'd share mine in case i hadn't.

long story short i've never been healthy. i was born way premature, jaundice, incubator, the whole 9. When i was little i'd get pneumonia at the drop of a hat. got mono twice (yet never chickenpox, or any variant of the varicella virus), allergies, asthma, whatever. i've always had problems with fatigue and bone pain...though my doctors didn't take me seriously because i -did- stuff. instead of bawling on the couch i worked full time, went to school at night, worked out...i pushed myself so hard to get through the fog that was in my head that it seemed like i was healthy.

in 2007 i started having severe abdominal pain. a CT scan showed some problems with my intestines (yay) but also some sort of "thing" in my spine. I think it was a hemangianoma. so i went to have an MRI of it. the mri was aborted after a few minutes due to my back getting hot (my back is tattooed). waiting for my partner to pay for the parking at the hospital, i was nearly dropped by this overwhelming sensation of bad. it felt like all the moisture had been sucked from my eyes and skin, and this disgusting metallic taste filled my mouth. my face went numb, my heartrate went through the roof and i nearly collapsed getting me to the ER. no one knew what was wrong with me at the time so it was chalked up to panic attacks. 3 days later i was vomiting blood, both the black gritty stuff from your stomach and the bright red stuff from your throat. still panic attacks. a month later i'd lost about 40lbs and was sickly thin, still panic attacks. modern medicine someone missed that it was anaphylaxis. good job Beth Israel, that's why I tell people to avoid you like the plague now.

my stomach started mottling and i went to see a dermatologist who noticed spots all over my back and arms. i'd had one biopsied a few years prior and the results were "high in histamine" though no follow up was prescribed. the new dermatologist nearly went through the roof when he saw this and apologized for his colleagues negligence. from there i had another biopsy, extensive bloodwork, and a 24 hour urine histamine. the biopsy showed high histamines, the blood showed high tryptase, and the urine showed high histamine. from there i was referred to a masto specialist who redid the tests and eventually everything was reconfirmed by a bone marrow biopsy.

so that's it in a nutshell.

i've been really pissed off the past week. last sunday i shocked in a car (which i wrote about) and assumed it was an isolated incident. then this past friday, reacted again in a car (different car, same model. it's possible i've developed a sensitivity to german cars i suppose. ok not really). there were no similarities in my diet or behavior on either day as far as i can tell. i don't know if it was aftershocks, my kidney being a jerk again, a virus, or something else. all i know is that i'm not too keen to have had two episodes so close to one and other. i sent an email to two of my masto doctors asking for advice so we'll see if i have to up my meds. good times. today i spent about an hour in the courtyard of my building hooping, as i'm trying really hard not to let this get to me. give me a week shock free and i'll be set. aside from hating the shocks/episodes/whatever, i hate how the meds make me feel. i've been way hesitant to use epi (my experience thusfar has been using an epi inhaler, never the pens) but i hate how atarax makes me feel. really stupid and slow.

ANYWAY hopefully my welcoming september in by being all reactive is over with and now i can go back to things being ok. i'm trying way hard to be optimistic, especially as i have a ton of stuff to get done and don't feel like letting this get in the way if i can help it. because really, i get so annoyed when people get all overwrought about this sort of thing. i understand that illness = suffering at times, but i still firmly believe that our perspective plays a huge part in how we deal.

Monday, August 31, 2009

i didn't let it get me down. today i went hooping with the kids at MIT and went shopping. Not the most adventurous of days, but I easily could've hid with my head under a pillow all day too.


Well I guess the positive streak had to come to an end at some point.

Yesterday I was driving back up from Providence with a friend when I started feeling a little off in the car. My eyes felt incredibly dry, like all the moisture had been sapped from them, as did my skin. Then I got a sort burst of heat from my chest, that oh so awesome feeling of flushing..which of course was followed by the panicky feeling, tachycardia, the intense stomach cramping, and the feeling like i might suddenly pass out. I quickly gulped down some gastrocrom which seemed to help settle things somewhat, or at least made it that the flushing and waves of metallic tastes in my mouth were pretty minimal compared to shocking episodes in the past.

This was all made about 10,000 times more awesome by the fact that my friend had decided to chart the most circuitous path through Boston to get to my apartment possible. I swear we hit every single red light in existence between when I noticed symptoms popping up to when I finally got to my apartment. It sucked, but once I got into my apartment, I took some h1 and h2 blockers and felt better. The bone aches kicked in later (i don't know about the rest of you but my bones ache after an attack) but no more symptoms. What sucked more is that I have -no- idea at all what caused this attack. None. I've done things that would be considered risky in the past month, but nothing that I can recall yesterday.

I was supposed to have some dental work done today, but I bailed on it, since I didn't feel like having to subject myself to something that might trigger more attacks and I want to give my mast cells some more time to settle down.

I'm not going to let this get me down though. I had a good long run without having any massive symptomatic episodes, and this is just a blip, a bump in the proverbial road. It's just annoying to get smacked down so majorly and so seemingly out of nowhere.

Tuesday, August 25, 2009

on death

I always feel like I want to preface posts that sort of originated on one of the masto lists with the apology that I'm not trying to pick on people or their perspective, so much as I am taking this over here so as to not specifically engage them in the conversation.

More than a few people with masto have set up google alerts so that they get an email whenever mastocytosis makes the news.

This "story" (actually an obituary) popped up in the past week:

Long story short, it's the obituary of a gentleman who died at the age of 83 due to mastocytosis. It's an obituary, it's written for or by the family to announce his death. This lead to discussion on one of the masto lists I'm on about how frustrating it is that the "article" didn't get more in depth regarding how the mastocytosis killed him...sort of ignoring the point that it was an obituary and not an investigative report on mastocytosis. Now, we don't know how this gentleman died, and we never will. All we do know from reading this "article" is that he lived a full and varied life and died 9 years over the average life expectancy for males in America while having mastocytosis. We don't know how masto killed him, we don't know how long he'd been diagnosed for, but to me, I don't want to know. He lived a long life, longer than average, and I guess to me that is comforting. If this were the obituary of a 24 year old, I'd be more concerned and probably want more answers. but in the end, the point of an obituary is to dwell on someone's life, not their death.

I understand fully that there is a great likelihood that this disease may kill me, just as much as I understand that I may die of heart disease (it runs in my family) or cancer (as I am a smoker - though I'm working on quitting, I swear) or I may die from being hit by a car or something else. Point being, I'm going to die at some point. We all are. The most important thing that we can do as people (masto patients or not) is to learn the adaptive behaviors necessary to live as long (and fruitfully) as possible.

Case in point, I really like tattoos. There's no real information out there on whether or not it is safe for masto patients to get tattoos. The one I have, I got years before my diagnosis. As much as I'd love to add to my collection of body art, I am unsure of the risk. If the risk is death, obviously the risks outweigh the benefits 100fold. So I will not get any tattoos until that risk has been assessed (and not by me personally, but by physicians, hopefully at the TMS conference).

I also know, from anecdotal evidence and empirical evidence that certain things carry a great risk for masto patients (sulfa drugs, opiates, etc) so I avoid them. I don't need to read every story of every person who died to be stalwart in my avoidance of these drugs. When I have to schedule a medical test I run it by either the list or my doctors to see if anyone has experience. If I'm going to attempt to do something new (using a vibration plate for exercise, going hiking where I may get bitten by mosquitoes) I ask people if they have any experience.

I don't focus on the mortality stuff as much for a few reasons

1) This disease, in my experience, is incredibly subjective. I can do things some people cannot do, others can do things that I cannot do.

2) Chances are we may not know the full story. In the case of the man in the obituary, how long did he have masto? Did he know he had it when he died? Was he being treated? Was he being treated properly? Unless we call his grieving family, there is no way to know this stuff. I know one story of a masto patient who almost died during surgery because they suffered cardiac arrest due to the anesthesia. Scary right? It's scary until I include this piece of information: they were diagnosed -post- surgery -due- to their near fatal reaction to the anesthesia. They weren't following any surgical protocol, their anesthesiologist did not know they had a high risk patient on the table...all of these facts came to light after the procedure.

As a mastocytosis patient (and one who strives to be educated on their disease) I carry all my protocols with me (being Dr. Castell's emergency protocol and the TMS's anesthesia protocol) , carry epi pens, instruct everyone around me on how to administer epi, wear a medical alert bracelet, don't wear perfume, don't drink, don't typically eat out (food seems to be my biggest trigger) carry a pillbox with prednisone, atarax, benadryl, singular, zantac and ketotifen in it (it's a sexy pillbox) and just sort of do the best I can. I follow the low histamine diet because it works for me. I slowly add foods to my diet to see if I do or do not react to them.

I feel like it's a double edged sword. On one hand, knowledge is power. As a cohort of people with an orphan disease, much of the information we gather is going to be gleaned from our peers. There's not a lot of money going into research, there aren't alot of interested researchers. I totally get that. But I also feel like there is only so much information I want to fill my head with, especially when it becomes redundant (opiates are dangerous, anesthesia is dangerous) and incredibly depressing. As I said in my previous post, I don't want this disease, knowledge of this disease, to comprise most of my time. I want to learn to live with it, in spite of it.

I am not scared of dying any more than anyone else is. It's not a pleasant thought. But I feel like there is only so much I'm going to learn when researching the how/why of masto patient mortality.

The following comes from the TMS website, to me the bolded part is the most important part. The rest are just guidelines which are optimal to be followed. Obviously I can't be next to a hospital at all times, but I just take solace in the idea that epi buys me time I guess. Cause really, to me, what is the point of being alive if I'm miserable and constrained?

There is great variation from person to person in what is a trigger, and even within the same person. The triggers may change day-to-day - that is, heat may set off an attack on one day, but not on other days. The above list is not complete, but is meant to show the wide range of triggers that affect mast cells.

Some people with the indolent form of Mastocytosis, and/or people with Mast Cell Activation Disorder or Syndrome, have been told by some physicians that they can expect a nearly normal life expectancy, as long as they keep themselves as stable as possible by avoiding triggers and taking medications as prescribed. However, since it is not clear what is causing mast cell activation in patients with MCAD, this may not apply. Mast cell diseases are extremely unpredictable, and some people can very quickly develop acute symptoms that may require immediate medical attention. That is why it is advisable to stay within range of a medical facility, and to carry a written protocol from your mast cell disease specialist for emergency care.

Sunday, August 23, 2009

almost 2.5 years

I've been "sick" for almost 2 and a half years now. At least that's when I got my diagnosis.

The kidney issue really threw me for a loop, rather hard. I was in tremendous pain and was tremendously unstable. It was awful. I had the lithotripsy and things started to slooooowly turn around.

Come April I came to a rather abrupt conclusion. This was aided by the passing of a 5mm kidney stone, without any painkillers. To say it was painful would be an understatement. However I also realized that my options were to either a) go to the hospital to see what would happen. Most likely they'd want to give me painkillers which I wouldn't be able to tolerate, plus I'd be in pain in the hospital, which would be miserable. Or I could stay home and try to get through it while meditating and making sure I was still able to pass urine. I opted for the latter, breathing and sweating my way through around 12 hours of the most intense pain I'd ever had.

In the morning I passed the stone.

I felt so powerful afterwards and I realized that while the masto had kept me from something as comforting as morphine to dull the incredible pain of the stone, it also kept me from even seeking out the additional comfort. Why couldn't I view my masto the same way? Why does this disease have to be this huge hinderance for me?

Ever since then I've been throwing myself into activities. I've been exercising daily, working on jewelry like mad, signed up for a class at MassArt for the fall, started working with hoop dancing...it's all so beautiful and wonderful.

It's like the past two years were under some sort of shroud. I was quiet, landlocked, miserable, kept to myself, kept quiet...now I just want to expose my heart and stretch and move and be loud and be around people and it feels glorious.

I'm obviously still sticking to my meds and to the low histamine diet...but I feel like this disease became an addiction almost. Everything was so colored by it, so darkened by it...and now I'm starting to be free again.

Friday, June 19, 2009

oh hey

so i am definitely going to be giving a brief presentation at this year's TMS conference in New Jersey. I will be speaking along side a doctor on how to survive a bone marrow biopsy. Reading the speaker list is sort of intimidating as it's all doctors and then me.

Saturday, June 6, 2009


Not much is going on in my life right now. The lithotripsy wasn't as successful as I'd wanted it to be, as there is still stone in my kidney. HOWEVER it is no longer blocking my kidney, so now I guess it's a waiting game.

Boston is scoring big time however, and Dr. Cem Akin is coming up here to practice at Brigham and Womens with Dr. Castells. This is huge, and while I totally feel for people in the mid-west who will be adversely hit by his leaving, the selfish part of me is psyched to get another mato specialist up here. While I adore Dr. Castells, I wouldn't mind getting a second opinion or backup with certain questions, especially as she is so overtaxed these days.

so here are two links of interest (well to me) one of which is negative, and one of which just sort of is.

First off, a terrible experience I had with a dietary blog that offers readers advice for a fairly steep sum. The author claims to have cured her own mastocytosis using raw foods.

http://reneoswald.com/ (i'm not hyper linking this site since i don't want her to come bitching that i am disparaging her or some nonsense, though if she does find this, whatever.) - I contacted the author after reading her blog and all of the wonders that the raw food diet provided her. Prior to my diagnosis (years prior to my diagnosis) I was a Vegan, and while in some aspects I found myself feeling fantastic, I also found myself relying too much on Soy protein and after reading up on the negative effects of Soy on the endocrine system I stopped. At the time I assumed the hormones in soy were bothering me, but in hindsight I'm guessing it may have been the fermentation. ANYWAY, point being that I'm no stranger to non-mainstream diets, really view food more as sustenance, and am willing and open to try a new diet to see if it would improve my health. Obviously unlike the author of that blog, I did not expect it to cure me of mastocytosis, but I figured it couldn't hurt. I'm all for complementary medicine/lifestyle choices if they are proven safe and effective (eg, I'll take yoga over colloid silver supplements thanks)

I sent her a short email commenting on her site, masto, and the diet, and never heard from her. A month later I somehow ended up on her newsletter and emailed her asking that if she couldn't reply to my initial email re: masto if she could take me off her mailing list. I got a friendly letter in reply briefly mentioning masto and about 3 pages of paid services she offers. I replied asking for more evidence based results re: the raw food diet and masto (since many of the foods she recommends are listed as high risk on the low histamine diet and some are outright risky for masto patients) and she replied with an email that managed to not answer any of my questions and again touted her services as a paid-for counselor/dietary consultant. Again I tried to explain that I had pretty extensive masto (and asked her what type she had had, since it's possible if she'd had UP our experience would be quite different), high bone proliferation, GI involvement, osteoporsis, etc etc etc and I got back this scathing email telling me that the TMS Board (which I am not a part of) is damaging to patients due to how resistant to change they are and how they are closed minded and only rely on allopathic solutions (which is total bullshit since the TMS board members recommend all sorts of diet/integrated medicine approaches that may work based on the individual, and if nothing try to dissuade people from more aggressive treatment that may cause more harm than good) and that it seemed like I was trying to present myself as being "sicker" than her. Which is entirely fucking stupid. What I was doing was explaining, "well i have these issues, do you think your diet is safe for me? I am conflicted about it since there is a lot of contradictory evidence out there." Now I will totally admit that I became terse since it seemed like she was more intent on selling me snake oil than answering 2 simple questions...but come on. She then replied to me with some nonsense about it not being the teacher or student's fault but she didn't think she could work with me. I replied that, yes, since she was incapable of answering a few questions I agreed with that assessment.

Another person I know actually called her and she again wouldn't answer any questions unless the caller offered her $$$ first.

Total bullshit if you ask me. While I understand that services do not come for free, I have a few issue with this

1) She claims to have suffered from masto. Therefore she knows how risky treatments/diet changes can be for patients. She should be able to answer a few basic questions about the low salycite/histamine diets before making a website designed towards garnering business for herself. Neither me or the other patient asked for free dietary advice other than, "I am concerned that this diet may not be safe for me, what was your experience like?" Instead she refused to answer any questions.

2) Honestly, the raw food diet itself is not that revolutionary. There are tons of books one can buy at their local co-op, whole foods, or through amazon. She is offering her non-tailor made interpretation of those cookbooks for a price that is higher than the cost of most of those books. It's trial and error, which again for masto patients can be dangerous, since they might go into shock as opposed to simply suffer indigestion if they eat the wrong thing. No nutritionist can make that call over the phone, RN or not. Especially if they don't have your medical records.

3) Hell, she can't even be held accountable for dispensing erroneous advice to anyone. The fact she was so hostile and so quick to lash out when asked a few introductory questions before myself (or the other masto patient i know) were comfortable committing is ridiculous considering her advice could potentially kill us.

4) If I found the dietary cure for masto, you can all bet I'd give it to you all (and everyone else) for free. Especially if it was simply regurgitated information I'd gotten from other sources.

So yeah, fuck that noise. If I'm going to try a raw diet, I'll do some research on my own, work with either an osteopath or registered nutritionist, and not someone online who makes broad claims about stuff they then refuse to back up. Obviously lesson learned, people will even prey on their "own" community to make a buck.

In other news, masto made a cameo in the New York Times.

Monday, May 4, 2009


I survived the lithotripsy.

All in all it was...eh. Honestly I found the BMB to be 100% more tolerable, but I do wonder if he have different tolerances for different types of pain. In my case, having needles stuck into my hip is far more preferable than being punched in the kidney a couple hundred times.

The anesthesia part went about as well as could be expected. Due to the nature of my masto, my urologist was adamant that the head of urologic anesthesia be the doctor to work with me. While he had never had a masto patient before, he'd worked with enough at risk groups in enough risky situations that he would be the best to be there if things went wrong. The only things that went wrong were that they were supposed to have IV Benadryl and IV Zantac has prophylactic pushes, however both ended up containing an unknown preservative, so they were moved to emergency pushes, along with steroids and epi.

For the procedure itself I was given a benzo (i forget which one) and a few micrograms of Fentanyl, which is generally tolerated ok by Mast Cell patients. Thankfully it was tolerated just fine by me, and while it was a teeny dose, it totally helped as I found the procedure to be really uncomfortable.

Post op was a fucking disaster, where some idiot resident wrote my post op scripts without reading my chart as every single one of them was on my list of drugs to be avoided. That meant I got to spend an additional 4-6 hours hanging around waiting for them to find someone who could write replacement scripts and to discharge me. My post op scripts ended up being Augmentin and Flomax (they were originally Cipro-which has caused long lasting tendon problems in me and Percocet - which i am allergic to)

1 day on the Flomax and I realized that was not for me. It helps you urinate (which I obviously need to do since I need to pass whatever was in my kidney) but it also lowers your blood pressure, which is something I did not feel comfortable with. Unless totally necessary, taking drugs that can markedly lower your BP aren't the best thing in the world since they can adversely effect epinephrine, should you need to administer it. Plus it made me woozy and cranky. The Augmentin is also making me feel pretty crummy, but I only have 1 more dose to go on that.

In 2 weeks I go for xrays and figure out if I need another procedure done or what. rad.

Thursday, April 30, 2009

a request

one of my doctors told me that this exercise can be comforting for patients undergoing procedures without analgesics, so i figure what the hell. since my procedure doesn't require painkillers (though most patients do opt for them) we're going to try for no painkillers and light sedation/meditation to see how i do.

they told me that i should tell people to send me good thoughts tomorrow, especially around 7:45am EST, since that is when I will be going in for surgery. apparently the simple idea of people caring about you, or the fact that you are thinking of them caring about you, can provide a great deal of comfort and fortitude. Obviously I am a little dubious, but i'm also scared as fuck so i'll take what i can get.

so yeah, 7:45amish tomorrow. me and my kidney would appreciate it.

Friday, April 24, 2009


i was approved for disability. i'm really not sure how i feel about this. i am glad that the financial burden of this disease will be lessened dramatically, however i am sad that this is where things stand. of course i want to get better, and of course i have to accept the fact that this illness is permanent.

Friday, April 17, 2009

on comments

Ok, I have to confess something here. I have another journal where, when someone comments I get emailed so I know it has happened. That apparently is not the case here, and as such I've been remiss in replying to comments. So please don't take it personally.

Thursday, April 16, 2009

it has been a while

Obviously i don't want to inundate this blog with all the minutiae that goes on in my life because most of it is boring and not relevant. Somehow I doubt y'all care about my videogaming skills.

Two big things have happened since my last post (well I guess three, maybe four. Okay, I hadn't really thought that sentence out at all.)

1) So the doctors were able to retest the remaining bone marrow aspirate after all, and I am apparently c-kit negative. This means that if I wanted to (or if my mastocytosis gets worse) I could potentially try an aggressive treatment like Gleevec. I am not at the point where I want to consider that though. However, I'm also a little leery about my test results. While I am proud of not backing down about the fact that the c-kit mutation wasn't originally tested, the fact remains that the test was done on a less than optimal sample. If I get to a point where I decide to go for more aggressive treatment, I would request having another biopsy done to ensure the proper sample size was taken, just to make sure that there is no mistaking the fact I'm missing the mutation (since it's rare not to have the mutation, and while we'd all like to think we are unique snowflakes, I find it difficult to believe I am a minority in an already teeny cohort).

2) If all goes well, i may be giving a little presentation at the annual TMS conference. My specialist was happy with how well I handled the bone marrow biopsy (considering how frightened I was) and voiced her concern about how many masto patients don't have them done. So she suggested that I give a little presentation on coping mechanisms and what to expect and all of that good stuff. We'll see if it happens. This will also be the first conference that I've been able to get to, being as I don't like flying. Obviously when the date nears I'll have a better idea of what is happening and I'll post more information there.

3) Kidney stuff still hasn't happened. As per my last post, there was lots of drama with anesthesiology. Apparently for whatever reason, the folks in Urology Anesthesia at MGH have never dealt with a masto patient before. Seriously. So now I've got the chief doing my anesthesia now. He called me yesterday and spent over an hour on the phone with me discussing various options for sedation and pain control. Overall it was a very positive experience (the only negative being that I am now being admitted for an overnight stay since they are anxious about the masto acting up, as it can apparently do so later on). I can't stress enough the importance of being an educated patient when it comes to dealing with a condition like this, or any orphan illness. Doctors, while our best asset, are not all versed in rare conditions so the onus lies on us to be able to educate them, or at the very least be able to provide them with resources. It's not easy, and of course it is an annoying additional responsibility, but it is well worth it. We are going to end up in situations where we need to be our own advocates, otherwise we may be presented with treatments that, while healthy for 99% of the population, can be quite dangerous for us (eg narcotic painkillers, nsaids, etc). It was very empowering speaking to this doctor who is obviously on the top of his field for such a long time, and have it be such a respectful and intelligent conversation. I'm still admittedly scared as hell about the surgery (which is on 5/1) but I feel way more confident than I did prior to the conversation.

4) I'm moving (in like, 2 days). Ok so this isn't 100% mastocytosis related, however it sort of is (for me). This is the apartment I got sick in. I remember sitting in the same spot I am now when I had one of my first big mast cell degranulation events, and not knowing if I was having a heart attack or some sort of massive, unprecedented panic attack. While it is a nice apartment, it is filled with a good deal of negative memories at this point. Not that I'm so traumatized I need to flee this space or anything so dramatic, but I felt like a change of scenery would be good. So yeah. New space, new dynamic, I'm looking forward to it.

Otherwise, that's about it. I had my disability hearing and am waiting to get the results back on that. I genuinely hope that that is a short term thing, as it's hard to feel defined by it. I know that there is more to me and this situation and this illness, however it's something I still feel sort of oddly ashamed about, which is obviously something I need to work on. The hearing itself went well. I had 8 doctors fill out paperwork explaining the systemic nature of this illness and how it would negatively impact my ability to work at the current time, and the judge and vocational expert both seemed sympathetic. So now it's a waiting game. an awkward and unpleasant one.

Monday, March 16, 2009


So the BMB was sort of a disaster. To make a long story short, somehow, somewhere, communication lines got twisted and i was not tested for the c-kit mutation. It doesn't matter how or why it happened. It just did. What we do know is that I have a 10% infiltration and that my mast cells are spindle shaped. So now we know without a shadow of a doubt that I have Indolent Systemic Mastocytosis. We also now have a baseline for mast cell infiltration, should it get worse. They are trying to see if they can test the remaining aspirate for the mutation, but it is unclear if that is possible. So the waiting game continues. Rad.

In other news, last Friday (the 13th!) I was supposed to have lithotripsy as I've got a kidney stone blocking my left kidney. Well, I went through the whole pre screening process at MGH for anesthesia and it still went all sorts of wrong.

this is what i wrote to a mailing list:

Soooo, tomorrow I am scheduled to have my lithotripsy. Tonight I find out that my anesthesiologist (at MGH, as only MGH and Faulker seem to have lithotripsy machines and all my doctors stressed I needed to go to MGH even though that meant scheduling 2 months out since the doctors at MGH would be far more familiar with mastocytosis than at a smaller hospital) has never seen a masto patient. She then tried to reassure me by telling me she'd read some case studies. I then asked her what treatment plan her and my mast cell specialist had come up with since when I went in for my pre-op testing the intake doctor stressed how important communication with my team of physicians would be, specifically my immunologist and my GI specialist since both of them are heavily involved in mast cell patients and surgical protocol. It is imperitive since I know of a few masto patients who ended up having their masto discovered after they flat-lined during simple surgery due to reactions to anesthesia.

Well, she didn't actually call my mast cell specialist (instead for some reason i cannot understand she contacted my endocrinologist, who while awesome, i've seen maybe 4 times), but she did read some papers (even though they've had my immunologist's contact info for like, 2 weeks). She then said if I was uncomfortable with her lack of firsthand knowledge of the disease she'd page my immunologist tomorrow (being as I have to be at MGH at 7am I have no idea what time they were planning on paging her) only my immunologist is going down to DC tomorrow for some important immunology conference. which may be an even bigger deal now that stem cells are back on the table or being looked to be put back on the table.

So I had to spend nearly an hour on the phone with the doctor explaining, again, that no I don't have rast-tested allergies but that I instead have indolent systemic mastocytosis which is not the same as having allergies save for the risk of death due to anaphylaxis. It was awesome that they called me the day before surgery to ask these questions even though I went in for a 3 hour pre-op consult nearly two weeks ago where none of this came up.

In addition to this excitement, I was told by the pre-op anesthesiologist that I would need to meet with the Chief of Anesthesia before the procedure since my case would be tricky. Only
that guy is out of state too now.

So I am so freaking out right now. Since I am about to get my period my mast cells are more active than usual and I've been flushing like mad, I got hit with the not-testing for the c-kit mutation drama fresh in my mind, and now it's like, every possible thing could go wrong for my surgery scheduled for Friday the 13th, something I was never superstitious about until right about now.

Between the pms/masto instability, the fact that my immunologist is not reachable, the fact that my anesthesiologist has never had a masto patient before, the fact I was told to have the surgery at MGH instead of a smaller hospital specifically to avoid having an anesthesiologist
unfamiliar with the disease which meant delaying surgery for almost nearly 2 months, the fact that the Cheif who I was apparently "supposed" to speak with due to the complicated nature of my case is also unreachable, has left me feeling very very very uncomfortable with the idea of having surgery tomorrow. I am about 10k times more anxious than I was about the BMB, and I honestly am wondering if, if delaying the surgery to fix the above messed up variables won't cause renal damage, if it wouldn't be worth rescheduling. Of course, I would've liked to have known all this before the night before the surgery too, so as not to have to make a snap decision first thing in the morning after i get to the hospital.....

It is so frustrating. I mean, MGH and Dana Farber are considered to be some of the best hospitals in the world and after the past two weeks they make me want to put my head through the wall.

After this, I saw my surgeon who was also unhappy with how things were handled and then decided to postpone the surgery. It honestly seemed like the anesthesiologist was more excited to have a House-like patient than actually listening to what the patient was saying. So now it looks like I am having the procedure done on the 27th now, with a dedicated anesthesiologist and all of that.

And then after that I have my disability hearing. yeehaw.

Friday, February 27, 2009

oh hi there

Eep, sorry i fell off the face of the planet for a while there. I've been dealing with a kidney stone which is by far one of the more annoying things in life. aside from setting off all sorts of masto symptoms, that sucker hurts, a lot. I've also been dealing with apartment hunting, as my partner and i decided we wanted to live back in the city. we ended up with a loft in a really neat artist collective and i cannot wait to move in...but i digress.

Ok, so my last post was all "whoo bmb time around the corner" (actually it was more "ooooh noooooo") and that corner has come and gone (though the procedure happened a week later than originally intended, and as such I am still waiting for the results which I should get by tomorrow or Monday). I had my bmb performed at Dana Farber Cancer Institute in Boston. Oh such a somber place. I'm always fascinated by the direct relation between how serious the field the specialist works in seems proportionate to how nice people are in the office. At primary care they wouldn't notice if you were on fire, but when you are at one of the top cancer hospitals in the country, everyone is way nice.

the procedure itself was, honestly, a cakewalk. the worst part of it by far was my anxiety, which was at banner levels for me. anxiety is something that has been hard for me to cope with since my diagnosis, since I am afraid of things going badly in ways i am unfamiliar with. so far in every case my anxiety has just added to the situation and made it worse.

to avoid freaking out and trying to volley kick a doctor, i opted to take 1mg klonopin an hour before, and then 1mg ativan right before. i was not looped out of my mind by any stretch of the imagination, but i felt pretty warm and comfortable. it helped that my doctor was stellar and my husband was allowed to stay in the room with me.

the procedure itself was way less bells and whistles than i expected. since i went to Dana Farber wearing my yoga pants and a loose shirt they didn't have me undress, and just pulled my pants down and my shirt up. then i got a shot of a local anesthetic (not lidocaine, i forget what it was) and that burned really badly. the shot hurt since anesthetics seem to burn by nature, and because the needle was stuck really deep in there to numb everything from the surface of the bone up to the top layer of skin.

after that they went in and did the aspirate (which is the collection of liquid marrow) and then got the bone marrow sample. aside from the local which hurt really badly really briefly, nothing else was particularly painful. it felt weird, and sort of gross and alien to have my insides siphoned out, but overall it was not a super unpleasant experience. there is pressure and feelings that are completely unfamiliar, but i think that as long as your doctor knows what they are doing, you aren't freaking out, and you remember to breathe into the pain (sort of like lamaze or meditation), you'll be set. it is also pretty quick once you get in there and get prepped. the anticipation really is the worst part.

in the essence of documentation, i had my partner take pictures of the procedure. however needs freak them out, so they didn't get any good shots of me getting poked though. i decided (and the doctors agreed) that while i was completely fascinated by the procedure, it would not be in my best interest to actually watch since the gauge or length of the needles might upset me.

so here are some pictures of my bmb to show how absolutely much of a non issue the whole procedure was. i've had worse dentist experiences when it comes to pain.

pictures from the procedure

Wednesday, January 14, 2009


i get my bone marrow biopsy. if anyone has any stories to share (ideally positive) i'd love to hear them. i'm scared witless to say the least.

Sunday, January 4, 2009

meds help

I can be reached at bridget.mcgraw@gmail.com


Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?

Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.

Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.

As it stands right now I'm taking:

200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)

What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?

My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.

Anyway, any and all help would be MUCH appreciated.