a friend of mine died of colon cancer. she was my age, in perfect health. she was the picture of living, so vibrant, energetic to the point of being exhausting, just so full of life and spirit that it was amazing to be around her. a few weeks ago she started feeling run down, at first chalked it up to her high stress job, went to the doctor to make sure she didn't have the flu, and somehow they discovered she had late stage, metastasized colon cancer. apparently her oncologist felt she'd probably had it for close to a decade due to how invasive it was.
a decade of living with cancer without even realizing it. she was a smart person, so it's not like she'd avoid going to the doctor for a few years while trying to ignore blood she was passing in her stool or something...she just was asymptomatic...and so full of life and vibrancy.
it just struck me, because lately i've been living so many shades of grey, in this inbetween state of car accidents, kidney problems, angry mast cells...and it in many ways rules my life, it makes me aware of my mortality, it makes me aware of my fragility, it makes me scared for what comes next (if anything) and to think that someone I knew, someone I always regarded as so full of life and energy and color and power and strength and health was in truth riddled with such an insidious disease. it seems perverse to me on some level...
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Life with a chronic illness isn't all about spoons and complaining.
About Me
- Bridget
- I've been living with a rare neoplastic disease called Systemic Mastocytosis for a few years now. I want to use this space to detail my experiences with this illness, as well as to hopefully show other people suffering chronic illness that life does not have to be all about the "spoon theory" and limitations.
Links of Interest & More
- The Mastocytosis Society
- Mast Cell Disorders Forum
- Dr. Castells - My main Masto Dr.
- Patient Info
- My Mastocytosis Facebook Page
- National Organization of Rare Disorders - Mastocytosis
- Dr. T.C. Theoharides
- Kevin's Masto Blog
- Another Masto Blog - Great Links
- A Chronic Dose - A Chronic Ilness Blog
- Chronic Babe
- Low Histamine Diet - I Follow This
- Google Results on Mastocytosis
6 comments:
Soo sorry for you.... it's so difficult to "justify" death of one so young. Sorry
I am really sad for you, your friend, and her family. How terrible and bizarre to have that happen. I know your sorrow won't help your masto -- juts hang in there!
Debbie from your mast cell forum
If you were me? Yes! If you were me, what and where would you go or turn....
I have lived my whole life with whacko symptoms...Now with my third child, its become apparent that she has this and I most likely do too....I see someone next Wed., but I have been told by Emory that NO ONE here can properly treat this/follow this....
Do I make the dreaded trip ALL the way to MD ~ NIH? Do I see a Hemotologist or Immunologist for a tryptase level? Or does that even matter? My PCP put me on Allegra 60 mg 2xs a day and I have been told its not enough....I was on 180mg Allegra D which helped, but now down to this....I won't bore you with all of my nasty symptoms, pain, etc....
I just need to know....if you were me, what would be your next step....
I have silently followed your blog for awhile now....combing through all the entries...hoping to find answers....
Praying for you....
Kristy Tootle
kristy,
OK, first step, if you feel that you or your daughter have or may suffer anaphylactic shock, and your PCP backs this up, GET AN EPI PEN, preferably get an adult prescription for you and a child prescription for your daughter. These are the first line of defense in terms of saving our lives if things get out of control.
I'd also suggest carrying liquid Benadryl or the quick strips until you get on a better medication regiment.
If I were you I would see an immunologist since they seem to be the most informed when it comes to masto. I would have a blood tryptase level done as well as a 24 hour urine histamine. These can help determine if you need a bone marrow biopsy or what sort of masto you may have...which can be important in terms of dictating your treatment.
As opposed to going to the NIH, I would suggest seeing one of the mast cell specialists who will test you and treat you and your daughter for your symptoms based on a custom plan for you (as opposed to the NIH who will dictate your treatment protocol so that they can monitor and study it)
many of the doctors are based in boston.
tmsforacure is a great website to get some basic information, and the masto-med list (youcan google it) is another fantastic support group (as much as I have complained about it, I have learned so much through the experiences of others)
In terms of symptoms, I have found Benadryl to work excellently for them, however you do have the resultant grogginess.
I have a ton of links on the sidebar of my blog that I have found super helpful both in terms of medical resources as well as general support group stuff.
But the most important thing is to not give up. this disease can thrive on internal strife, because stress is a massive trigger for mast cell episodes. Yes this is pretty lousy, but it doesn't have to be the end of the world. There are advancements in treatment all the time, and simple things like asprin or antidepressants or zantac can help lift tons of symptoms...so the most important thing is getting the best treatment for you and your daughter and going forward from there.
good luck and please stay in touch
Kristy,
also, i just hopped over to your blog (your daughter is beautiful) and one thing I want to stress is to ignore that article written on the kid with masto. it was not researched at all, and honestly, from what i've heard across the board the child is being treated poorly, especially in regards to his diet, which is mostly fast food.
Food is essential for masto patients. so much of our immune system resides in our gut that it is imperitive to have a healthy diet, something the Boychild kid did not have. Also, keeping his sequestered away from the world is only increasing his stress levels and potentially damaging his immune system by not having him exposed to anything
Many many many people with masto live fulfilling, full lives. I know people who run marathons, businesses, non profits..the list is endless. and there are some people who are scared to death of living and end up like the story you linked to.
I actually contacted the author of the piece (as did many people involved with the TMS) and she was very hostile when we tried to correct her on a lot of misnomers in the article. Realistically, it's a piece about a family that wants to raise money for their kid and painted the most dire picture possible. completely unrealistic.
Hi:
I am looking for connections between colon (sigmoid)cancer and mastocytosis TMEP. I can be reached at doctor cnc at google's mail. Obviously you take the spaces out.
Thank you, Jim
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