gallstones

yeah, so, last friday, after fighting for some sort of diagnosis that would cause the endless nausea, too full feeling, breathlessness, abdominal pain, etc etc, for about 8 months now, i finally got a real diagnosis. i have gallstones. i've noticed things have been getting worse for months, after every test known to man (ok not quite but the list is pretty extensive: EKG, ECG, endoscopy, colonoscopy, chest x-rays, another EKG, endless blood tests from complete metabolic panels to one that finally showed some inflammation somewhere).

a couple points for those with CML. apparently the weight loss that many CML patients experience (i was losing about 5 pounds a week right before i was diagnosed--i dropped a full pant size in a week near the end there) can cause gallstones http://win.niddk.nih.gov/publications/gallstones.htm. additionally, CML patients are rather more likely to develop gallstones: http://www.ncbi.nlm.nih.gov/pubmed/19349718 so, keep an eye out for the symptoms.

my symptoms were pretty straight forward and now, looking back, probably anyone should have looked for gallstones after they eliminated ulcer.

high upper abdominal pain (mine was right in the middle, but sometimes it's on the right)
shoulder blade pain
endless belching
pain grew worse in the evening
pain that grew worse when laying down, and leaning back.
pain behind my sternum
feelings of panic
heart pain
breathlessness
undigested looking food coming out the other end
feeling of fullness that wouldn't go away
lump in my throat

i complained of these issues at various times. probably my oncologist should not be expected to catch an unrelated disease issue, and i'm not mad at her particularly, altho given that CML patients are more likely to get gallstones than average, she should perhaps have considered it. but my GP should unquestionably have suspected this. gallbladder removal is one of the most common surgeries done in the US. http://medicalcenter.osu.edu/patientcare/healthcare_services/surgery/intraoperative_care/common_surgical_procedures/Pages/index.aspx
when it became obvious after endoscopy and EKG that it was neither my stomach, nor my heart, more tests should have been done. good grief, the doctor that finally caught it, first knew something was wrong because he did a fairly simple blood test: http://labtestsonline.org/understanding/analytes/crp/tab/test . she should certainly have done basic blood tests, x-rays and such before attributing it to "stress" or "being overweight" or not getting enough exercise. all of which she suggested. while i like her bedside manner, i'm not fond of her stick-to-it-iveness. not at all. when it wasn't an ulcer, she jumped very quickly to, "you've gained lots of weight since getting diagnosed with cancer so it must be related to those things".

i'm so glad that i finally headed for an urgent care and insisted that something was really wrong and they needed to figure out what was causing the pain involved. sometimes it's hard to trust yourself, but if you are in pain, find someone who will listen, and tell everyone it takes to get them to listen, and do the tests. no one deserves to live in pain.

on being a pilgrim

Deciding to walk the Camino has changed my life already in ways i have difficulty explaining. i have more energy. I’m waking up earlier. Doing more every day. Feeling like there is purpose to my life that I think I had given up on having. And more...

People want to talk about, and I’m not sure what to say. I decided on a whim. I think that emotionally I need a symbolic thing that will show that I am changing my life. Being diagnosed with cancer created hopeless feelings in me, about all the things I could not do. All the life changes I would have to make. I allowed it to make too many of my decisions for me.... I’m finding already that I feel differently. That I have more hope, more energy, more of a life. The symbolism of walking, of going on pilgrimage is changing how I feel about my cancer, and how I feel about my life. 

I’m trying to plan what to take.... just not sure yet.

I’m also trying to plan how to do my kickstarter. I’m working on what to my patrons for various levels of support. Do you have any suggestions? My thoughts so far:

1.     A rock from the Camino (it’ll be small)

2.     Postcards from the walk

3.     Personal letters in persona from the walk

4.     Carrying tokens (that don’t weight much) for other people on the walk and leaving them in towns along the way… (I’m thinking maybe I’ll carry an item  for $1/mile—that would mean I’d carry an item all the way for $500)

5.     Bringing said token back (for another $500)

6.     I’m going to take apart one of the outer dresses and make it into pilgrim pouches to gift to patrons

7.     I’m going to do the kickstarter to create an ebook about my experiences both in persona and not—some patrons will receive free ebooks

8.     Access to a “private” blog

what to take on a pilgrimage

i'm not a list maker. at all. but in about 345 days i want to be on the Camino. i need to plan. mostly because weight matters.

1. 3 under dresses
2. 2 over dresses
3. a wool hood/capelet thing-y
4. leather bag
5. socks--hand knit or commercial?
6 bicycle shorts to avoid chafing
7. modern undies
8. camera
9. cell phone
10. a passport (i need to get one pronto)

?????

Buen Camino

so... it's been months, and that's partly for lots of reasons. i'm trying to quit concentrating on this disease i live with, and just live. things are going ok. and side effects suck.

BUT: i've made some decisions lately and you should know about them. about a year ago i caught the tail end of a Rick Steve's show about Spain that talked about the Camino de Santiago. for those of you who don't know, i'm a pretty committed re-creator of the middle ages, particularly the 12th century. and the discussion was that people who walk the Camino (a 480 mile pilgrimage from a French border town, across the Pyrenees into Spain and then most of the way across Spain) walk through tiny towns that have existed since the 12th century. that 12th century people walked the Camino. and i got enthralled.

so, for the last year i've been reading and seeking information about the Camino, thinking "some day..."

then about 2 weeks ago i got a hair-brained idea. to do it. not wait for someday. walk it. start training now. so, i've started walking. i'm out of shape and fat. but i'm walking. i'm making plans. dreaming. and working toward making my dream come true.

this walk.... i intend to walk away from my diagnosis. i'm going to keep treating my disease of course, but i need the symbolism i think. the symbolism of a pilgrimage. and the dreaming and planning. when i got diagnosed i allowed my disease to make entirely too many decisions about my life. i get to make the decisions. this disease? i have it. it does not have me. i will not allow it to dictate me life. i'm living with it... not allowing it to live me.

so, i'm debating whether to change the name of this blog, start a new one, exactly what to do. what do you think?

feeling breathless...

and not in a good way.

i've noticed more and more than when i walk up and down stairs and sometimes just when i'm sitting i feel like i can't take a full breath. i feel a bit like i'm not really getting enough air ever. it's a bizarre feeling.

dr. warlick recommends a chest x-ray. i have a call in to dr. babbitt to see if she can get that scheduled.

hoperfully we can get it done soon. perhaps even before i go to MN as the feeling is quite unpleasant.

The face of leukemia

life is odd. yesterday my in laws and i got to chatting about leukemia and the public face that it has. it's an oddity, that i don't know exactly how to deal with sometimes.

the reality is that 90% of the people diagnosed every year with leukemia (all types) are adults.

there are LOTS of kinds of leukemia.

ALL: Acute lymphoblastic leukemia (the word acute here refers to how fast moving the leukemia is--acute is fast moving leukemia, chronic is slower).  this is the most common childhood leukemia. but it also affects adults. 85% of children survive it, only 50% of adults do.

AML: Acute myelogenous leukemia. This is primarily an adult disease. only 40% of people survive it.

CML: Chronic myelogenous leukemia (My disease). almost exclusively an adult disease. currently it's pretty survivable--90% survival rates. children who get chronic forms of leukemia are far harder hit as i understand it.

CLL: Chronic lymphocytic leukemia. almost no children get this. 2/3rds of the people that get this are men. 75% survival rates (by the way all the survival rates are at 5 years, which in the case of chronic forms doesn't mean as much since the chronic leukemia types don't have a cure usually)

Hairy Cell Leukemia: extremely survivable (about 95-100% at 10 years) no known childhood cases. ever.

T-PLL: T-cell prolymphocytic leukemia,  very rare and aggressive leukemia affecting adults. It's really hard to treat and the median survival isn't in years, it's in months.

there are more, but they are progressively more rare. so i'll stop there.

the point? the face of leukemia is a cute little kid, typically with no hair, and they are portrayed as dying. now, don't get me wrong, kids do die of leukemia. but the treatment for children is getting better and better, and by and large, it's survivable, if horrible when kids get it. adults on the other hand, not so much. look at AML up there. 40% survival rate at 5 years. until 10 years ago that was CML as well.

the issue that i have, is hard to explain. i totally get that cute kids make better plays for money. and i get that kids dying is horrible and hard and a waste. the problem i have is that so are adults dyeing. it's a horrible death. hard. it's a waste. and a huge portion of the population is shocked when i tell them i have leukemia. "do adults get that?" is the typical response. when i explain that actually leukemia is a disease that mostly affects men, over 55, they are further shocked.

i am not suggesting for a minute that we should stop trying to fix childhood leukemia. hell, childhood cancer. what need to be said tho, is this, cancer sucks. all of it. the children and the adults that have it need your help. and the reality unfortunately is that adults are dying more of leukemia than kids by a long shot. and i don't want to hear how i got to live out my life. i have kids that need me, a husband, a family, all that. adults are no different than kids. we have plans. we have wants and needs. and we have faces. how do we change the face of leukemia? do we need an ad campaign with my face, and my friends? how do we acknowledge that leukemia is mostly an adult disease without being told that we're insensitive to the kids? it's not that i want to erase their faces from my disease. it's that i want my face there too. a 45 year old woman with 3 kids and leukemia. and i'm struggling to survive it too.

Good news, and prayers

First, i'm praying for those victims of the school shooting in CT. i am thankful that i spent my morning watching my son's wonderful holiday concert, and not worrying about whether he was alive or not. the devastation of incidents like these are really beyond my comprehension. i hope you'll keep these people in your thoughts as well.

second, i had a quick call with my oncologist today. Dr. Warlick had all good things to discuss. she went to the ASH/hematology conference, and she came back with new information. In particular, there have been studies ongoing that take people with CML who have achieved the highest level of "remission" (i put the word remission in quotes because that's not really how we talk about CML) are removed from the TKI. a chunk of these people have not been off of their TKIs for as long as 5-7 years without a recurrence of symptoms. by this i mean that people who have achieved a zero level of Philadelphia chromosomes in the peripheral blood, and they continue after 5 years to have a zero level. apparently a slightly higher percentage of women have shown success in this.

the awesome part is that Dr. Warlick thinks it is reasonable to consider the possibility that if i could reach zero levels that i might be a candidate for this.

for those who know me well, they may already understand what i'm about to say, those of you don't may not be terribly surprised by this. I'm really goal oriented. i'm willing to do incredibly difficult things to get a good result. i started my own business. i've done many things that require this particular personality type. i willingly tolerate crappy, cruddy, and unpleasant things to get to a goal. so for me, the idea that there is a goal makes me feel more like i can continue on this road. indeed that i would be willing to take higher doses and deal with even worse side effects if the end result *might* be that in 4 years i could go off meds completely. i'm good at doing things with a purpose.

part of what has been truly difficult has been that i have been asked to simply take the meds with no real concept that tomorrow will be better. i take my meds and hope that tomorrow won't be worse most days. in the long term that is simply difficult. i feel like i'm missing out on half my life. but i would be willing to deal with more if i thought that it would give me back my life.