Sunday, December 31, 2006

New to SharingOurDays -- A Life Less Convenient (Lupus)

New SharingOurDays reader Sue Cline has suggested a blog that is one of the most impressive I've seen. Incredible images and writing. Jen Burke is the writer and she has lupus; I am incredibly impressed with the work she produces basically every day.

Here is an excerpt from December 25, 2006:

Drag is not an option
By Jen at 12:44 am on Monday, December 25, 2006

As soon as you put on a mask or go in drag, your world is a tad distorted. Your world shifts as others’ perceptions of you change.

Business drag: put on your suit, get your game face, and go.

The fact of my disclosures here changes what kind of mask I can wear for future employers and clients. That said, for employers and schools since ‘98, I have had to disclose my illnesses to receive accommodations under the American with Disabilities Act. If folks don’t know that I’m ill and have proof of my claims, there is no way they can be expected to make any reasonable accommodations.

In disclosing, I give up privacy. Privacy in exchange for equalizing the playing field by giving me a route around my limits. My disabilities are invisible, unless you’re seeing me at a doctor’s office maybe, or see me limping on a bad day, or something else along those lines. For the most part, people have told me they would have no idea that I was sick based on appearances for the most part (some days, I look green and not nearly as cute as Kermit); appearance-wise, folks have told me that I look like the healthiest one in the room (which was kinda scary occasionally, considering how thin I was at various times over the years when people made this remark).
“But you don’t look sick.”

No, I don’t, and I make every effort to look as good as I can, which is why I’m hyper about maintaining weight and staying fit. And that extra helping of blush didn’t hurt me none, yet looking healthy in some ways gives me a different problem: I have to convince people of sickness and its impact on my life without making myself sound like I will be terminally incompetent.

By default through disclosure, I give up the disguise of the professional, of wearing business drag, because I have told employers, schools, and most recently the bar about the facts of my life, about the facts of inconvenience, altered schedules, and altered states.

Early in the disease, I was learning through trial by schedule. I didn’t know what I could and couldn’t do. The only thing to do was to try something and then see if I crashed and by how much. Now, there is no point in being anything but honest in my limits, since the truth of illness comes out anyway, especially since I’m at a hospital at least once a week and normally more.
The encouraging part of the post for those who are in the same boat and wondering: clients have never questioned me. I negotiated fair deadlines that took into consideration some days of possibly being flat on my ass - just in case because I can’t take my body’s ready performance for granted.

As for employers: when I was resuming and interviewing heavily in ‘04, firms were receptive to what I listed as my needs and the fact of illness once I disclosed in the interview. I was hired despite my limits because of what I presented in my resume. The biggest health-related disruption in my life then that altered my work with a firm had nothing to do with my health; it was my mom’s cancer diagnosis. The responses that I received in ‘04 were the biggest boost to my confidence - the responses to my work weren’t being altered because of my illness and that employers still looked at what I produced over the years in law school and at work.

The downside I’ll describe in terms of what I’ve learned: I’ve learned that many people simply don’t know *how* to work with someone who has a disability or is chronically ill, which means I have to provide the know-how and roadmap for how to make it work, how to set deadlines, how to set up communication and quality checks and so forth. I’ve also learned that if an employer still has the mindset that you *must* show up 8-16 hours a day in one physical location everyday, we simply aren’t going to work out, but that is the truth that everyone knows: not every person is a good fit with every employer.


Thursday, December 28, 2006

New to SharingOurDays -- Richard French (Cancer)

Richard is a teacher in England who does a great job of telling us about his treatment and pretty much every aspect of his life. It is a very active blog with lots of pictures. Pretty cool.

Here is an excerpt from December 28, 2006:

Day 93 [C1D14] - Flat, Tired & Soooo Unmotivated
Thurs 28th - Healthy So Far

The really good news is that 14 days in to the first cycle and so far, as far as I'm aware, I haven't experiencd any major side-effects to the chemo. There are niggling minor side-effects such as nausea and occassional vomitting (hope you're not eating your breakfast!), and the infamous metallic taste and feel, oh and aching feet and limbs. The biggest impact, however, seems to have been to wipe me out of any motivation for anything, I'm assuming that this is part fatigue and part psychological.

Since last Wednesday I've felt incredibly flat, there seems to be no fuel for any form of enthusiasm or motivation, from eating through to Christmas. Of course there is the outside possibility that this isn't to do with the treatment at all and that in fact I've simply, and finally, evolved in a to a super couch potato!!!!

Monday, December 25, 2006

New to SharingOurDays -- My Year of Healing (Breast Cancer)

You'll like this blog from Mary. She writes very long entries, with lots of detail -- plenty of it emotional, plenty of it medical, and lots of personal insights.

This is an excerpts from Friday, December 22, 2006:

To B or Not to B
One of the many positive outcomes of this cancer experience has been having so many wonderful people walking beside me along the journey. Of course my friends and family have been with me every step of the way, but I have also met a lot of new friends along the way. Alice, one of Bo's landscaping customers and a breast cancer survivor herself, is one of my new friends. Ever since she heard about my diagnosis from Bo, she has been doing so many things to support both me and our family - from sending cards, books, and gifts, and baking blueberry pies (my favorite), to arranging dinners to be prepared and delivered by the ladies of the Stonehouse neighborhood for the entire month following my surgery. This week, she scheduled an appointment for me to go to Richmond to get fitted for my prosthetic breasts. (Alice had a lumpectomy and didn't a prosthesis; however, she had visited this particular store for wigs while she was undergoing chemo.)

Thank You, and Merry Christmas!

Okay, not everyone does Christmas, but I do, so I wish everyone the best on this holiday that is important to me and my family.

For everyone else, happy holidays! These days mean so many different things to the people who visit SharingOurDays. Some of them wonderful and some of them pretty crappy. Whatever is happening with you right now, I wish you your own piece of happiness today. We all deserve it.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays

Friday, December 22, 2006

New to SharingOurDays -- Ellie Skees, Age 8 (Children)

Jeez, it is hard to not get a little teary as I write this. Today I'm blogging in with the first entry about a child with cancer. Her name is Ellie and she is eight. The blog is written by her mother. Now I've read more and I dare you to read it and not cry. But you'll also find the strength of an amazing little girl and the family who loves her.

Here's the entry from Wednesday, December 20...

Snowglobe Surprise!

Yesterday we went to Michael and Kathy's (John's uncle and aunt) for a visit, and ended up staying over night and all day today. We had a great visit, and it was like a mini-vacation for me. I was able to read, watch TV, and enjoy my computer (after Michael fixed it for had been doing some strange things lately). I even got the creative outlet I had been needing - I was able to rearrange Kathy's living room. In case you are wondering, no I do not randomly go around rearranging people's furniture (that would just be rude)...I had been helping Kathy with this before Ellie got sick, so it was a continuation of a former project fo me. (O.k, I guess I'm kind of lying...if you're reading this, then in all likelihood I have rearranged your furniture before...maybe more than once...maybe even long distance with pictures or over the phone...drawn diagrams on napkins in restaurants...or perhaps talked about it but never gotten to it - yep, that just about covers all of you except the ones I haven't met. How rude!) Sorry, back from that rabbit trail. Ellie had fun too - yes, I do remember that I have a daughter. She had a blast - she watched TV, sat in front of their new and beautiful fireplace, watched families of racoons come up on the back porch to eat the cat food, played on the computer and got some special attention from Michael and Kathy. John was working both days, but he stayed the night with us.

Tonight when we arrived home, there was a gigantic inflatable snow globe in our yard waiting for Ellie from Jenn & Jim and family, Mom and Gary, and Grandma Jean and Grandpa Jim! I woke Ellie up just before we pulled into the driveway and she was shocked. When she finally got her bearings, Ellie jumped out of the car and ran across the yard. I did get some video, but I'm having some technical difficulties with putting it on the blog, but I do have a picture of when they set it up.[Thanks guys for doing such a special thing for Ellie - she was so excited! She has been admiring other people's Christmas decorations, especially the snow globes. Thank you, Jenn for coming up with such a wonderful idea. I'll try to get a good picture on tomorrow of Ellie in front of it in case I can't get the video to work.]

Ellie has a clinic appointment to check her blood levels. I think everything is dropping, particularly her hemiglobin. It will be good to find out if she needs any transfusions before Christmas. We also plan to bring Ethan home tomorrow...I just need to unearth his bed. We miss the little guy, and I know that he's puzzled and disturbed because of all the upheaval. He's happy and doing well for the most part, but he sometimes has dreams and thoughts that he's never going to come home again. He also dreamed one night that I left him in a building. I know, it's so sad. As soon as he's home again, he should see that we are still the same famly that we've always been. Poor little guy. He sometimes says "Mommy (or Daddy) tell Papi and Bubbie 'thanks for taking care of my little buddy'." We obligingly (and gladly) thank them and for some reason that just tickles his little heart.

Oh, I also wanted to let you know that if you post comments, you may want to check back on them because I do try to reply to them, particularly if you ask questions. Also, if you sent in a comment but haven't seen it posted, or I never answered your questions, please re-post your comment. I know that I have lost at least one...I accidentally deleted it before it posted...anyway please don't hesitate to try again. I'm so sorry if I've missed any. I do enjoy hearing from you, you are all so encouraging and it always blesses my heart to know so many people are out there loving us and praying for us. Thanks so much!

Thursday, December 21, 2006

Entry I like from "Breast Cancer Victory"

Here's an excerpt from one of the blogs we track, Sylvie Fortin's "Breast Cancer Victory." Chemo is starting to get to her. Sylvie is tough, though, and I'm betting she's going to be just fine.

Check out

Here's an except from yesterday's entry...

Halfway Done And I Hit A Snag
20 Dec, 2006
Well, it’s hard to imagine, but I’m already halfway done with my chemotherapy treatments (yippee!). And there’s something I’ve learned along the way…

It gets tougher as the treatments progress.

I don’t know if it is like this for other chemo patients, but I have found that with each treatment, I get more and more tired and feel more dragged out. Napping is becoming less of a luxury and more of a necessity each time I have a treatment.

Wednesday, December 20, 2006

New to SharingOurDays -- My Bladder Cancer Journey

We had a request to find blogs related to bladder cancer, so here we are. This first is from "A Dived Reef," who often posts more than once a day.

The following post is from Tuesday, December 19...


I was out this morning and talking to an old friend who has to have heart surgery. It was an interesting conversation as the worry is that it is 4 months to get the angioplasty and "I could drop dead tomorrow!" So one of the things he is doing is sorting out all the "dead" things in a "Dead File" - who to contact, what bank accounts and insurances are held where and so on. That brings it home to you having to sort these tings out. I have most of my stuff well organised but I don't have a dead file yet. It wouldn't be a bad thing to make sure that everything was in order and available rather than trying to sift through my office and find it all.

Bit of a sobering thought. I guess if I did it next year as a project it may be useful - not that I am planning on doing anything that would need it but just in case of course :-)

Tuesday, December 19, 2006

New to SharingOurDays -- This Cancer Survival

Nancy is in Canada and offers her very genuine account of her fight against cancer with a not-so-supportive family (that's my undertstatement for the day). Don't read this blog looking for much sunshine.

Here's the most recent post, from Monday, December 18, 2006...

open letter to my father at christmas time

I recently had to debase myself and ask my father for a loan to pay for a Speech Language Pathologist. Despite my Canadian address, rehabilitation for cancer survivors is not paid for by the government. They'll be happy to save your body, but to hell with your life!!

(Someday I'll tell you about how my father's wife once told me that not only do I NOT deserve financial support for my disabilities, but that I should pay the government back for my cancer treatment. She wasn't even trying to insult me ... she actually believed this drivel.) My father thinks that my reports about late effects are lies. (umm, New England Journal of Medicine?)

Here's an email I'm working on to send him (if only ...):

Since you mentioned it, if you're truly interested in improving my well being there are a number of things you can do. First is to starting insisting that your wife take full responsibility and apologize for her abhorrent and abusive attack against me in your home, that happened now more than three years ago.

And to apologize for the abusive and malicious comments that she's made in reference to my struggles. Namely, that "she pities me". I can't tell you how demoralizing it is to see you put your own selfish need to pacify your wife before defending your own daughter's right to be treated with dignity, honesty and respect.

Second is to acknowledge the full truth of the damage that has been done to me by way your abandonment and neglect and dismissal of my health issues. Instead of believing in me and advocating for me, you joined with the health community and wrote me off as a mental case in need of chemical restraints, restraints that you were only too happy to provide as a dutiful pharmacist and eminent business owner in our modest little hometown.

So not only failing as a father, but also corrupting your professional life. This ended any possibility of a public apology, since saving face publicly was priority one. Tell me, how DO you sleep at night. (Oh yeah, the easy access to narcotics.)

The point being, who the hell are you to expect a detailed explanation about what late effects treatments are for?

You've consciously chosen to remain ignorant about my situation and then are arrogant and presumptuous enough to interrogate me, in a pathetic attempt to save face and continue to undermine and ruin my reputation and credibility.

And, scene!

Friday, December 15, 2006

Entry I like from "Life Changing Cancer"

Here's an entry I like from Lynne Dahlborg's blog, "Life Changing Cancer." It is from Monday, December 11th. There is a permanent link to the site here at SharingOurDays if you ever need it.


Expectations are dangerous things. We can have "good" expectations, or more accurately, expectations of good things to happen . . . "I'm looking forward to Christmas, it's going to be wonderful!" (words either of my children could speak at any moment in the next two weeks), and expectations of bad things to happen . . . "I'm worried that that pesky, damn spot of cancer in my abdomen was a metastasis, or can cause a metatasis because it connected to my lymph or blood system." (The last part is according to the pathology report that was available this past Friday, and these are thoughts I've been having a lot over the last few days.)

Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website. "

Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.

Receive all people as beautiful exactly as they are.Be the change you want to see happen, instead of trying to change anyone else.

Create your own reality consciously.Provide others with opportunities to give.

Have no expectations, but rather abundant expectancy.

Problems are opportunities.

As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past.

So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!

So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.)

So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful. How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.

Wednesday, December 13, 2006

New to SharingOurDays -- As the Tumor Turns (Cancer)

Dang, this one is going to kick your ass a little bit. Lymphopo is "a single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out."

The writing is good and the perspective is important, powerful. If you want an extremely personal perspective on life within the U.S. healthcare system, here you go.

The following post is from Monday, December 11, 2006...

I Hurl Like A Girl
"This is not a novel to be tossed aside lightly. It should be thrown with great force." -Dorothy Parker

You're always hearing people blather on about how cancer made them a better person. Not me. I can't say that cancer has made me a better person, but I sure as hell can say it's made me an angry, bitter person. And, somewhat unexpectedly, it has also taught me how to pitch a blazing two-hundred-mile-an-hour fastball. Or rather fast book. Specifically, those ubiquitous "inspirational" cancer books.

These two gifts from cancer, the bitterness and the pitching, are not unrelated. And raise your hand if you're shocked to hear: it's all about the money.George Scott once said, "Nobody throws harder than Nolan Ryan. Not even God." But ol' George had never seen me take on a pile of "inspirational" cancer books.

The first book I hurled so hard it broke the sound barrier was Lance Armstrong's famous cancer story, It's Not About the Bike: My Journey Back to Life. Go read the 700 reviews on Amazon: I don't think there's one that doesn't use the word "inspirational." The message being, See? If Lance Armstrong can beat advanced cancer and go on to win the Tour de France, YOU CAN TOO!Feh. I admire what Mr. Armstrong has done and all, but how in the hell am I, a middle-aged bankrupt uninsured nobody, even remotely like this superhumanly fit young billionaire celebrity? As soon as he was diagnosed, Armstrong held a press conference announcing the bad news, and within hours dozens of the planet's leading oncologists were clambering aboard his bandwagon. Twenty-four hours later his crack team of brilliant cancer luminaries started his treatment.

My diagnosis at the underfunded overcrowded public charity Hospital for the Indigent Damned was delivered to me by a 12-year-old rotating resident whom I never saw before or since. And even though I have an extremely aggressive stage-IV cancer, it was another six weeks before my treatment began.

According to a new study being presented this week at the American Society of Hematology convention, "Patients from deprived areas had a higher relative risk to die compared to patients from affluent areas...The existing deprivation gap in relative survival for both men and women confirms that cancer survival depends on socio-economic background and is inequitable."

Survival: it's all about the money. I bet fame doesn't hurt either.

The second book I tossed aside at Mach 2 was Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond by Marc Silver. The underlying assumption that runs throughout this book is that the readers are overwhelmingly affluent and insured.

In a chapter called "The Price of Looking Pretty," Silver tells the BC husbands: "If you've got the cash, don't scrimp. A wig fashioned from luxuriant human hair can run well over $1,000. For that price, your wife gets hair that shines and swings." Hmmm, let's see, shiny swingy hair, or paying the utility bills this winter? Tough decision.

In a chapter called "Hey, Big Spender," Silver writes: "The New Normal isn't just about coping with the specter of cancer as well as lingering side effects. It's also about enjoying every day. For many couples this leads to what women jokingly call 'the tumor upgrade.' In other words, retail therapy." New cars! Exotic vacations! Remodeled kitchens! And, he adds, "Guys deserve a treat too. Hey, you were a good caregiver. Go ahead, knock yourself out!" Followed by stories about men who treated themselves to sports cars, drum sets, and new SCUBA diving gear as rewards for being such good breast cancer husbands. I nearly broke a window pitching that one.

Even the books that I liked were chock full of privilege and supersonic hurl moments. In young handsome hotshot actor Evan Handler's Time On Fire: My Comedy of Terrors, he tells about how his influential well-to-do parents pulled strings to get him into the best program with the best doctor at Sloan Kettering. Fwooosh!

In The Red Devil: A Memoir About Beating the Odds, young beautiful hotshot editor Katherine Russell Rich remarks that a big advantage of living is Manhattan is that there are more oncologists to fire. And fire them she does, any time there's a personality clash. Zing!I don't have this little luxury over at Our Lady of the Damned. There's only one board certified oncologist on staff, and he doesn't even see patients. He just comes in from his private practice one day a week to instruct and oversee the residents. But on the bright side, I'm rarely assigned the same rotating resident twice, so any personality clashes can't last more than the requisite 7 minute clinic visit."

Cancer survival depends on socio-economic background and is inequitable." And inequitabilty makes me bitter. Once upon a time, I had health insurance. Until I turned 50 and the premium outstripped my income. But it was a lousy limited policy, and even if I had been able to keep it, this cancer would have bankrupted me.

Sometimes I come across web sites that make me so angry I want to pitch my computer out the window. But here's one that made me slam my forehead against the keyboard and cry: The Lime Project. It's about Heather, a 34-year-old potter who was recently diagnosed with Hodgkin's lymphoma. A bunch of her friends have put on a fundraiser, posing naked for a cheesecake pinup calendar they're selling to raise money for Heather's medical expenses."

Unfortunately, Heather has no prescription coverage on her medical insurance, and because she is working, she doesn't qualify for government aid," these friends tell us on the web site."

The medications that will keep her alive physically are going to kill her financially, and even if she survives the cancer, she may not survive the debt...the medical bills keep rolling in, much faster than her salary can cover them. We're naked so Heather doesn't go broke. So buy a calendar. Or five. Or just donate. Or buy pottery from Heather- she can finally make things again after not being allowed to touch any clay during the course of her treatment. But help us help Heather. We love her. And none of us want to see her win her fight against cancer, only to be held under crushing debt for the rest of her life just to stay alive."

Is this a fucked up inequitable world or what, when even an insured cancer patient's buddies are reduced to stripping and posing naked on a calendar so she can afford medical care? And then people try to blame it on the Prednisone when I can't stop crying.

So, dear readers, let's review what we've learned today: The existing deprivation gap in relative survival for both men and women confirms that cancer survival depends on socio-economic background and is inequitable. I just want you all to read those words one more time. Especially the word inequitable. This means that some lives are valued more highly, and are more worth saving than others.

Anyone want to join me for a pint of bitters?

The only cancer book I've loved totally and without reservation. RIP Miriam.

Monday, December 11, 2006

New to SharingOurDays -- Surviving MS in Alaska

This is kind of a fun one, from Michelle.

This post is from November 2...

Back to Winter
I had a good time in San Francisco, I really enjoyed spending time with my daughter. I never has soo many comments about how young I look. She would call me "Mom" and people would stop and asked if they heard right. Most people think we are sisters. Sound's like bragging, it's not, it's just funny. It runs in the family. My mom came to pick me up when I was a junior in high school and SHE got stopped by a teacher asking her for HER hall pass, I was disgusted, not understanding. My mom just laughed. NOW I understand :)

San Francisco has a CRAZY bicycle scene! I wanted to rent some bikes and ride, but we couldn't fit it in. So now I'm back, work is a nightmare. 3 people walked off the job in 3 weeks. State jobs aren't as great as they used to be. My workload is the largest it's ever been. I can't wait until this weekend, work is wearing me out. It's cold here, in the 20's. It's actually good winter biking weather as everything is frozen, easier to ride in than slush. We have a few inches of snow. Lots of sparkly frost. The sun was shining bightly this afternoon, it was really beautiful.

I had no MS problems in San Fran. That was nice. I was good and took my shot every night. I have to take a day off the shots every now and then as I get sore. I can only inject in my mid-section, I don't have enough sub-q fat on my arms and legs, the med was getting into the muscles which is really painful, causes hours of cramping. Taking a day off the shots once a week helps it all heal up a bit.

I hope everyone is doing well, I have not had time to check anyones blogs lately.

Hey Charles, I fixed you link, sorry about that. It should work now!

Life is good, everyone!

Teri Garr's birthday

Yes, today is Teri Garr's birthday. For those of us who follow the world of MS, we know that Teri is one of the great ambassadors for our community. She has accomplished so much, separate from her ongoing health condition, and I, personally, am grateful she has turned her attention and talent toward making things better for the rest of us.

Saturday, December 02, 2006

New to SharingOurDays -- E. is for Epilepsy

Here's a great one from Paula Apodaca about her life with Epilepsy:

Here's how she describes her blog:

There are social barriers that keep people with E. out of normalized life. I want to talk about these things, so my blog isn't about treatments or surgical techniques. To me, it's more important to talk about E. with an emphasis on the experiential, social and cultural elements of epilepsy, in place of the medicalized jargon we have all been subjected to.