cancer. it's not just an astrological sign anymore.

if the internet exists in heaven...

2006-04-12T22:18:00.000-04:00

ear Sweetie,

I am so sorry that this happened. I have replayed the events of 17 March over and over in my head--and each time that I trace back through that day, I see another omen that I carelessly dismissed. I see more and more choices that I could have made differently that day. Would you still be alive if I had insisted on further examination at Johns Hopkins on 16 March? Would you still be with me if I had left work early on the seventeenth, or not gone at all? Would you have died a more comfortable death if I had been there when it happened?

The fact of the matter is that you and I were both coming to terms with the cold truth that we probably weren't going to grow old together. After the damn, fucking leukemia came back for the last and final time, there was a sea change in your demeanor...not as if you had given up your fight, but as if you acknowledged death as a possibility and were no longer afraid or angry. The last Saturday of your life, when we were at the mall with my sister and her fiance, we were sitting on the bench and saw that adorable elderly couple clutching each others' hands, slowly shuffling their way through the crowd...I looked at you and said (as I had so many times before) "That's us. That will be us in fifty years." But this time, your response was different. Instead of smiling sweetly and saying, "I can't wait, babe," you gazed off in the distance and said, "I don't know, babe. I'll try." The words terrified me at once, and continue to haunt me...did you know that the end was near?

I miss you so much--as do many others. That goes without saying. But losing a spouse is different than losing an adult son, a brother, or a nephew. You and I were a team, every day and in every way. Every small life event, the errands, driving, sitting at my desk, brings back a floodlight of memories. I miss your physicality, your sense of humor, the way that you used to sing in the shower when you were having a good morning. I miss the hair on your chest and the warmth of your hands. I even miss your snoring--you could snore every night, all night if it meant that you were back with me.

Throughout the transplant and your leukemia treatment, occasionally my mind would slip to that darkest of possibilities. I must confess, the reason why we went out last July and spent $200 (that we didn't really have) at one of DC's best steakhouses for your birthday was that if your twenty-fourth was your last, I wanted it to be a damn memorable and enjoyable one. We talked often about living life to the fullest so that when our time came we could go without regret.

Even though we thought we had prepared for this by filling out our living wills and discussing final wishes a bit, there is nothing that can prepare you for losing the love of your life. I want you to know that. I never thought that I would be "okay" if you passed--but no one tells you that grief will strike you so hard it will quite literally drive you crazy. There are whole large segments of time during the week immediately following your death that I simply have no memory of. I have been in the car, driving about for errands and thought that I was in one town when I was actually in another (this is quite frustrating when one is looking for a particular business). Sometimes when I read, I see words on the page that are not there--a second examination reveals that they were only a trick of the eye, but at first glance words like "Eric," "Oahu," "love," and "cancer" are typewritten onto the page as plain as day. There is also a part of my brain which (quite illogically) believes that you'll be back for me. I haven't been able to shut off your cell phone yet, for fear that you'll need it later. I am reticent to move to North Carolina with my family, for fear that you'll come back to Maryland and not be able to find me. I acknowledged your death in the most public of ways--damn near a thousand people came to the viewings and service--but I still worry that you are too cold up on the hill, that we didn't dress you warmly enough...I still look over my shoulder sometimes at work and expect you to be walking through the front door with flowers or dinner like you used to. People think that I am strong and doing well but they don't see the forgetfulness and sleepless nights.

For the most part I am stoic on the outside--although most ironically, it was that soulless bastion of consumerism that is Wal-Mart that finally brought me to my knees. I did not cry at the funeral home or church or cemetary when we were planning your services. However, I fucking lost it in the Men's Underwear Department. Your undertaker had asked that I purchase some underwear for you to wear since my parents forgot to grab some--and I was carefully picking out the very best, combed-cotton undershirts (the ones without the scratchy tag in back) and the very nicest socks and briefs that Wally World had to offer. I think that the gravity of the whole thing hit me when I thought, "I had better pick out the most comfy stuff since he'll be wearing them a long time." More than one shopper saw me blubbering away, hunched over the blue shopping cart with a pair of men's microfiber dress socks in my hand. Clean-up on Aisle 5!!

But please don't worry--I am surrounded by so many people who care. Friends from the Air Force whom I haven't spoken with for quite some time somehow tracked down my phone number and are checking in frequently. Your parents have taken me in like I was their own daughter--I was at their house quite frequently after it happened, looking for those hereditary traits that remind me of you. Did you know that you fold your hands like your mom, or that you inherited your bear hug from your dad?

My family is working overtime to make the move to North Carolina go smoothly. I am trying to get a little house with a fenced-in yard and a dog, just like we always wanted. And my dear friends from the blogging world have posted so many tributes to you, and were profuse with their words of love and remembrance...I hope that you can see how many lives you touched.

Please know that I think of you nearly every minute, and dream of you every night. I regret not being more spiritual in the past--if I had gone to church regularly and professed my faith in a God, would I be able to communicate with you now? Where are you--were you reincarnated as a sea turtle, are you in heaven or in Nirvana or is it all a lie that they tell us to make us less frightened of death?

As much as you and I tried to live a life of no regrets, strangely enough, now I am questioning so many of my choices...except the one where I gave myself completely to you. I love you, as truly and strongly and purely as two people can love each other. Wherever you are, I hope that you can see this and know it with all of your being.

Love,
Amanda

**This is my last post at "cancer. it's not just an astrological sign anymore." I may blog at another location at a later date.**

2006-03-29T16:18:00.000-05:00

rom December:

"to those of you who are still reading this manifesto, if you carry nothing else away, please remember this: never take anything for granted. although we would like to believe otherwise, human beings' mortality is a fragile thing. there is no guarantee that you will wake up to see tomorrow--and it doesn't matter if you always wear your seatbelt, eat your veggies, or floss. the only way to truly acknowledge this fact is to live each day as fully as you possibly can. eat a cookie for breakfast every once in a while. do something random and crazy at least once a month. reconnect with old friends. challenge your own boundaries, fears, and prejudices. you may not get the opportunity to do this tomorrow, a week, or a year from now."

Those words seem so empty now...

conclusion: Eric W. Shaffer, 7/21/81-3/17/06

2006-03-19T08:27:00.000-05:00

ric passed away on Friday night at home at approx. 11:30 pm.

As such, this blog is closing. I hate this fucking thing. Most of all, I hate you for making me think that I had something worthwhile to say. Each of the thousands of words on these pages are moments that I should have spent with Eric. I will never get that back. Fuck this.

cyclical occurrences...

2006-03-17T11:26:00.000-05:00

quick update...

Eric and I are doing OK. His primary oncologist doubled the dosage of Gleevec for him, which is the only chemo that he was still on, and increased dosage is making him quite sick to his tummy. Having this to deal with, on top of the bad news, has been tough for him. But the docs are working with us to at least manage the side effects, so he should be feeling better soon.

We had what was supposed to be our 6-month, happy-go-lucky, clean-bill-of-health appointment at Johns Hopkins yesterday. The docs there are nothing short of magical and told us that the failed transplant was in fact NOT the end of the road as we had feared, but that there were two more treatment options for Eric--the first being enrollment in a clinical trial. There is a new class of drugs called "Super Gleevecs" (none of which have FDA approval--YET)--but they're in the final stage of trials, which means that they are done testing the meds on lab rats and monkeys and are now testing them on people. The plan is to enroll Eric in one of those studies and see if the new meds can help him. The final step would be to transplant a different type of cell from his brother (the original donor)--but that would be an absolute last resort because the potential for life-threatening side effects is high. So we are keeping our fingers crossed that he'll be admitted to a clinical trial.

This just sucks. We were so eager to put this all behind us and move on wit our lives. We had begun to lay plans for the future...Eric had applied to a couple of jobs with various environmental agencies, we were looking at leaving this area for one with a lower cost of living so that we might be able to buy a little house, and I was eagerly counting the days 'til I could say goodbye to the military for good.

Now, we're right back at square one...again.

Keep your fingers (and toes) crossed for us. And if you have the time, bug your congresspersons and senators like hell to fight Bush's proposed cuts to cancer research funding and programs for the next fiscal year.

You can e-mail your state's representatives at LiveStrong, go to the main page and click on "Tell Congress NO to cuts in cancer research."

the image game...

2006-03-17T08:49:00.000-05:00

'm usually not one for games, quizzes, and the like, but this one is different--it's a unique and fun way for one to pay homage to their blogfriends. Invented by aka_Monty, I hijacked it from Lucinda and Jessica. No, I'm not very original right now, but I have a bit of an excuse. So here goes:

Jessica: Wise

Minerva: Inspiring

Debutaunt: Fearless

Being Made: Resilient

Dave: Funny

(now I know why he's a Vegetarian)

Karen: Talented

real cancer, real lives

2006-03-16T23:13:00.002-05:00

dition number fourteen has been posted by the lovely Minerva of A Woman of Many Parts. Please stop by for a read, and click on the logo in my sidebar if you are interested in helping out with this blog carnival project.

holy fucking shit...

2006-03-08T16:58:00.000-05:00

t's back. Eric got really sick last night, we were both up all night, and he went to his local oncologist today while I was at work.

The leukemia's back.

another milestone...

2006-03-07T00:05:00.000-05:00

ust a brief note to point out that the ACS Web Badge (the "I Fight Cancer" graphic underneath my profile) has reached a participation of over one hundred websites! When I added it to my site, the counter was in the mid-fifties--which means that the number of sites displaying this badge has doubled in just a few month's time. If you haven't added the badge to your website or blog yet, please consider doing so!

Here's more on the project, from acswebbadge.org.

What does it mean to say "I Fight Cancer"?
When you display an "I Fight Cancer" badge on your blog, you commit to one or more of the following:

-Write a blog entry on your experience with cancer
-Invite 5 bloggers to display the badge
-Talk to your friends and family about getting screened for cancer
-Wear a matching American Cancer Society wrist band
-Get involved in local American Cancer Society events and programs, like Relay For Life or Making Strides Against Breast Cancer.
-Or, make a donation.

so true...

2006-03-05T22:38:00.001-05:00

good blogfriend of mine, Cary Miller, has been relentless in his support for his wife, Lori, as she battles cancer of unknown primary origin. I've been so thankful to have someone to compare notes with as we both deal with the unique issues faced by twenty and thirty-something cancer patients. And now...he's written something that captures the anger that I struggle to keep tamped down every day. Please read the following post, then stop over and offer some support...

The Anger Is Eating Me From The Inside
by Cary Miller

Foul Language Ahead: You’ve Been Warned…

If you’re looking for a happy-go-lucky, “cancer is the greatest thing that ever happened to me” kind of post, you might want to click away from this page before you read any further — I’m feeling neither happy, nor lucky.

Seriously. I hate this fucking disease.

I hate it for destroying what was supposed to be the best time of my life (for those of you who are new to this blog, my wife was diagnosed with stage-IV cancer a scant seven weeks after we were married.)

I hate it for aging me before my time, and for stealing my ability to feel true happiness.

I hate it for tainting every single fucking holiday, weekend, and vacation with a creeping, ugly fear that never goes away, and only occasionally sinks far enough into the background for me to actually relax.

I hate it for both the terrifying psychological pain, and the incredible & relentless physical pain it continues to cause my wife.

I hate it for making me feel that I’m actually somehow “lucky” that the woman I love more than anything in the world is still alive and fighting for her life three years after we were married.

I hate it for the amazing friends it has killed slowly & painfully, and for the devastated family members it leaves behind, not having the decency to just put them out of their misery.

I hate it for tainting my usual optimistic self with an anger that is absolutely eating me from the inside out.

And It’s Making Me Violent

No, I would never hurt a fly… but often I wake up in the middle of the night and feel I have to punch something — as hard and relentless as possible (our new sofa usually ends up on the receiving end of my rage, but sometimes I just walk around the house slamming doors.)

Sometimes… most of the time… the frustration and pain of not being able to protect my beloved from her disease is more than I can possibly bare.

And sometimes… well sometimes I feel like chucking this fucking blog in the trash and walking away. Just walking away and never looking back. That’s why I haven’t been writing much lately.

Sometimes it’s just all too much.

the second time around...

2006-03-05T21:29:00.000-05:00

unning updates for the week: I ran four miles for the second time today, with the assistance of a knee brace. The first time left me a bit (OK, a lot) sore, especially in my left leg. And the weight loss has *finally* started. Woo-hoo!

Days Running: Forty-nine
Peak Weight: 222 lbs./100.7 kg
Current Weight: 216 lbs./97.97 kg
Miles This Week: 9.7
Total Miles: 40.1

In other news, I'm multi-tasking tonight, watching the Oscars and blogging at the same time. I. Love. Jon. Stewart. If I lived in Utah, he could be my second husband. Jon, if the Jewish thing ever gets old, I'll be waiting for you with the Book of Mormon by my side. I'll even forgive you for making Doogal.

she's running the distance...

2006-03-01T11:10:00.000-05:00

uess what I did this morning?

I'll give you a few seconds...
.
.
.
FOUR MILES!!

Yes, it took me forty-nine minutes. I'm currently averaging between 12 and 14 minutes/mile, which is not a pace that's gonna be breaking any records. But this is the longest distance this chubby chica has ever run in her whole life.

I will definitely be ready for Honolulu in December. In fact, I can hear the trade winds rustling through the palm trees now. *grin*

Woo-hoo!!!

"the man" taketh away...

2006-02-27T11:30:00.000-05:00

have said it before, and I'll say it again: the United States of America government doesn't care about sick people.

Eric and I went to have our taxes done this morning. In light of the massive amount of medical expenses that we had in 2005, we were expecting to get most, if not all, of our taxes refunded to us.

No such luck...in fact, we have to pay in. It turns out that in Hawaii and Maryland, medical expenses are a standard itemized deduction, not a separate category unto itself. Unless your medical expenses top the standard deductions for a married couple ($10K for the 2005 tax year) in these states and several others, it basically doesn't count. (Note: our tax preparer did say that in some states, medical expenses are a stand-alone deduction, that is, you can claim the standard deduction of $10,000, plus whatever you paid in medical bills as an additional deduction. Talk to a tax professional to see what the specific rules are for your state.)

This means that you could have medical expenses of up to $9,999.99, and it DOESN'T COUNT. Ours thankfully were not that high (about $6K) but it still sucks. The financial ramifications of a long-term illness, even when you have insurance (as we do), are often devastating. Four months after leaving Johns Hopkins, we are still sending them several hundred dollars a month, and it's not like we are made of money.

And now we have to come up with extra money for a tax bill on top of everything else.

How many times can the federal government screw over this young couple affected with a chronic illness?

Stay tuned...I'm sure that "the man" has some more tricks up his sleeve...

real cancer, real lives, lucky number 13 edition

2006-02-26T19:16:00.000-05:00

ello and welcome to the thirteenth edition of Real Cancer, Real Lives! This blog carnival is a continuing effort of patients, caregivers, and medical bloggers to document what living with cancer is really like. The goal? To bust through the misconceptions about this disease that are perpetuated by the media and those who've been lucky enough to have never had to deal with it.

The submissions for this edition run the emotional gamut. There are joyous, frustrated, anxious, and mad-as-hell posts--but such is the nature of cancer. Please enjoy the following posts:

Patient Blogs

Cancer Portrait shares the great news that she is now in remission! Please stop by and share in the celebration!!

Minerva, author of A Woman of Many Parts, submitted "So Angry...," a post which provides a crystal-clear view into the myriad of ways that this disease affects the lives of so many.

Jenny of Jenny's Belly celebrates the end of her chemotherapy with her post "Last Day."

Debutaunt, who is gearing up for her bone marrow transplant tomorrow (!), writes about the hospital experience in Haiku. Head on over and wish her luck.

Caregiver Blogs

Doug, the author of Below the Beltway, takes note of the attention recently directed towards ovarian cancer due to Coretta Scott King's death. In "It's About Time," he calls for more research and better diagnostics for this particular kind of cancer.

Cary of Cancer News Watch sings the praises of pain meds in his submitted post, "Thank God for Drugs, The Pain is Gone."

Real Cancer, Real Lives needs you!

If you’ve enjoyed reading this week’s carnival, please visit the Real Cancer, Real Lives home page and read more about how you can host the carnival or submit your cancer-related writing. There has been a dearth of both hosting volunteers and post submissions lately—please get involved!! By starting this carnival, Cary and Lori have created an open, honest forum for anyone who is affected by cancer. Won’t you help out?

E-mail Cary to sign up for a date to host the carnival. Currently, 12 and 26 March are available, as are all dates in February.

Submit your posts at the blog carnival submission form (please make sure that "Real Cancer, Real Lives" is highlighted in the "choose your carnival" box).

Real Cancer, Real Lives, Cancer

on the road again...

2006-02-26T18:08:00.000-05:00

n running news, there is good and bad. Bad news first because I'm an "let's end on a high note" kind of gal.

The bad news? I'm still at about the same weight I was when I started. My shape is changing, and my clothes fit better, but that number on the scale is refusing to budge. Which gets discouraging after a while.

But the good news is that I'm now running a full two miles every day...without stopping to catch my breath or take a walk. I'm not breaking any speed records, but I am running the whole thing! I know that two miles isn't a lot, but it's more than I've ever been able to run all-at-once in my whole life. So I'm feeling pretty damn accomplished this week. I only have to add 24 more miles to that, and I'll be ready for December!! *grin*

Days Running: forty-two
Peak Weight: 222 lbs./100.7 kg
Current Weight: 221 lbs./100.24 kg
Miles This Week: 7.6
Total Miles: 30.4

adrift/astray

2006-02-25T01:35:00.000-05:00

fter this long, strange trip, I have reached a crossroads that is completely foreign. In some strange, sick way, absence is making the heart grow fonder. Without our lives being dictated to us by doctors, we tentatively reach out into the fog and try to grab onto life. But instead we seem doomed to forever feel the mist slip through our fingers.

We try to envision what may lie down the road for us in 6 months, a year, five years...but it remains the same empty rhetoric that was to serve as inspiration during the treatment. Eric and I both knew that, while in the midst of his bone marrow transplant, that talk of houses and new jobs and adorable adopted children and pets was literally just talk. It was nice to think about, but there were far greater matters at hand. Focusing on survival and daily medical testing forced us to switch how we gage the passing of time. For now, every day without aches or nausea or skin rashes is a good one.

In theory, living for the moment is a great perspective to have--our experience has forced us to take stock of and appreciate the small things in life. But when finding joy in the short-term becomes apprehension of the long-term, this perspective is no longer welcome. We ~~want to~~ need to find a new life--being part of a renting couple with one menial and one wholly soul-crushing job is not the Great American Dream. But each decision is fraught with risk--the availability of health insurance for a transplant patient weighs heavy on our minds, as does proximity to a proper hospital--what if Eric found that dream job, only to find out that the only large medical facility in the area was a podunk County Hospital? Should we bother to make long-term plans, when we are armed with the knowledge that our own mortality is so frail?

Part of me just says, "Fuck it"...and that voice is getting louder and louder. There is a self-destructive streak emerging that I never knew I had. That part of my brain would be perfectly happy to take the easy way out; to move to a cheap house in a backwater town and get a dead-end job where it might be OK if I showed up hungover once in a while.

I am having trouble finding the right words to describe this mental fog...it is not depression, but rather a cavalier dismissal of any new challenges...I am insulating the two of us in mediocrity...

finding god, or a reasonable facsimile thereof...

2006-02-24T09:07:00.000-05:00

s I've stated earlier, organized religion and I aren't a very good mix. I have too many questions about the rules of individual denominations to be considered a follower by those who are truly faithful. I've been lucky enough to be exposed to many different religions and denominations in my lifetime; I just haven't found anything yet that truly speaks to me.

Imagine my delight then when I found this. The Church of the Flying Spaghetti Monster might be old news on the internet, but it's hilarious, so I'll share it anyway. The site pokes fun at the recent Intelligent Design phenomenon, succinctly spearing those who take their beliefs way too seriously (as in, those who say "I'm right about religion and if you don't agree with me, you're going to hell") at the same time.

Enjoy, and happy Friday...

running like hell, part two

2006-02-21T10:52:00.000-05:00

ortunately, after "taking a break" from my training, I was able to get back up to speed with a shocking lack of difficulty. The weather's getting better and I've been able to run outside more. This is a lot more interesting than running on the treadmill, so I've been a lot better about getting myself going. There's a two-mile circle that I run, and I'm almost at the point where I can run the entire distance without stopping to walk. Progress has been made, but there's still a long way to go.

Because of starting late last week, I only got in five miles last week. I'll start posting full stats again this weekend. Thanks for the supporting remarks, everyone...they really help to motivate me.

an open letter to my husband

2006-02-19T18:45:00.000-05:00

ear Eric:

Today is the one-year anniversary of the diagnosis of your relapse. I face this grim reminder with many conflicting emotions: the carefree beach-bumming of our first ten months of marriage lies in starkest contrast with everything that happened after that fateful day. Sometimes, it seems like a day spent without discussing doctors, prescriptions, or treatment is so far away that it must only exist in my distant memory. The rituals of maintaining the medicine cabinet and driving to various clinics have replaced the lazy mornings of pancakes and pajamas until noon. Although you have survived 80+ spinal taps, 10 months of different forms of chemo, and a bone marrow transplant methodology (non-matched donor) that has only been in use for four years, I know that your biggest concern is the effect that leukemia will have on your family's future. You worry about the financial impact of not being to work on top of the added expense of doctor's copays. The fact that we had to relocate for your treatment has weighed heavy on your mind. Even though you had hidden behind the "kids are annoying and expensive" guise, I know that you were heartbroken when we found out that we would not have the option of making a small, perfect human being together.

You once asked me if I would do it all again. In spite of everything, dear, the answer is yes; because all of it happened with YOU. You are greater than the sum of your parts. The love in your heart far outweighed the effects of your faulty bone marrow; the beauty of your soul shone through even when you were bald and bloated from the chemotherapy. I used to think that strength was being independent and influential to others; you have taught me that this quality instead is a result of the kindness that one shows to their fellow beings. You have shown me that bravery is being fearless in the face of the most unlikely of odds. Eric, you are greater than any disease that could be thrown our way. You WILL beat this.

I love you and can't wait to see what the next year brings in our life together.

Yours,
Amanda

flowers for debutaunt

2006-02-18T20:11:00.000-05:00

he lovely Debutaunt needs some support. She is a regular read of mine, funny, fabulous, and a mommy to one of the cutest little girls around. She also has leukemia, and is being admitted to the hospital tomorrow morning to start her bone marrow transplant at M.D. Anderson. Please head on over and leave some kind thoughts.

Deb frequently challenges her readers to complete assignments that encourage taking part in life's small joys. Recently, she received two dozen roses and asked her readers to get flowers for themselves so they might share in the same joy that she experienced. She's just like that--generous, joyous, and REAL, even in the face of a long, complicated treatment.

These flowers are in honor of you, Deb. I know that you won't be able to have real flowers in the hospital. However, I hope that you know that you have so many people all over the internet and beyond thinking about you and hoping for the best. The transplant won't be easy, but I know that you'll do your best to kick those lovely stem cells into high gear. You CAN do this. And we'll be rooting for you with all we've got.

back on the wagon...

2006-02-16T23:58:00.000-05:00

f you've poked around here a bit, you might know that I pledged to run a marathon back in December for the Leukemia/Lymphoma Society. And you also might have noticed that I said I'd post weekly updates on how the training was going. And maybe you noticed that I hadn't posted an update in a while.

I fell off of the wagon in a big way. Not just failing to exercise, but shoving my face full of any kind of junk food imaginable. My low point was asking the cook (with a manic gleam in my eye) at the Youth Center if she had any chicken fingers left--keep in mind that these are School-Lunch-Program, ultra-greasy, processed "chicken" shapes. With dressing. I wolfed those suckers down like an addict.

It all started innocently enough...two weeks ago, I had gotten the mother of all colds and quite literally couldn't breathe without the assistance of copious amounts of decongestant. For three days, I was shaky and wheezy and mucus-y, and I really don't think that trying to run at that time would have been the best idea. (I also managed to drop a large bowl of yellow mustard on my running shoes. The really smelly kind. Don't ask.) But then, I got better...and failed to start exercising again. By the end of the week, I had slid into all of my old (bad) habits. I was nabbing snacks with the kids (and eating the gross "meat" products instead of the fruit), eating seconds at dinner, having a chip or two or twenty while I watched the game...

Changing one's lifestyle is a road fraught with distractions--one wrong turn and suddenly you're back where you started. But I have a great cause to run for in both my husband and the Leukemia/Lymphoma Society.

So yesterday, I laced up my shiny new, mustard-free running shoes and got back on the wagon. And I'm running like hell to make up for the time I've lost.

decision

2006-02-15T21:53:00.000-05:00

bout my left boob: I finally came to two decisions today. Number one, Eric and I get worked up about medical stuff way too easily. Waayyy too easily. Secondly, even though we both got really paranoid about all of this, I still deserve to meet with someone who will take the time to answer my questions about the sonogram.

Eric got a message on his phone today from my referring doc, telling me to call back and ask to speak to the charge nurse. We have a history of phone calls like this and the outcome has never been good--in our case, this message is usually code for, "We've got really bad news for you and we don't want to leave it in a voicemail." Eric relayed the message to me and promptly broke down. While on hold with my doctor's office (it took them a while to grab the nurse to take the call), I got no fewer than two phone calls asking if I had heard anything yet.

I finally got through and spoke with the nurse.

"Um...Ms. S-----? We have notes of a fibrocystic breast change in your record, and we'd like you to go ahead and schedule a surg consult..."

I asked the nurse my questions about the content of the mass and told her about my diet, but she didn't have the pics in front of her. She did tell me that if radiology had really thought that the mass was something to worry about, they would have sent me for a consult that day.

So...surg consult is next month. And I'll get my second opinion and have my questions answered.

But I'm not getting my panties in a bunch over this.

P.S. Yesterday was Eric's first day of work! Other than the scare with the phone message today, he has been in SUCH a good mood...it's awesome that he has somewhere to be now that's not home or a doctor's office.

real cancer, real lives

2006-02-13T10:37:00.000-05:00

rish, the author of Blogging for a Cause, has posted the eleventh edition of Real Cancer, Real Lives. Many outstanding bloggers have supported this effort with poignant, outraged, and touching submissions. Head on over, read, and enjoy, and sign up to host or submit a post if you are inspired to do so!

meme is the new black

2006-02-11T21:03:00.000-05:00

es, I know, memes are the bane of the blogosphere. But this one (stolen from mipmup) struck me as particularly interesting. And Lucinda, Miss Ann Thrope, and Dooce have all done them lately, which leads me to believe that meme-stigma might be fading. So here goes:

10 Years Ago...
I was fifteen and a sophomore in high school. I had just met Eric and we were becoming good friends. Still in the awkward phase though (although who isn't when they're fifteen?)

Five Years Ago...
Junior year of college. Living in a basement apartment in Pittsburgh with three roommates and one of their boyfriends, who was there all the freakin' time, so he sort of counted as a fourth roommate.

One Year Ago...
Working as a govt. peon intern (of the non-Monica Lewinsky variety) in fabulous Hawaii. Eric and I were still in the newlywed phase. It was awesome.

Yesterday...
I was at work. It was crazy. One of the little girls calls me "Pickle-head" for no apparent reason (but she is so damn cute that I really don't mind).

Today...
According to the newscasters, the DC area is getting "The Snowstorm of the Century!!!" I went to the mall this morning for a haircut and got a new book off the bargain rack (I am a total book-store geek). Stayed in, watched the snow, read my new book ("Dress Your Family in Corduroy and Denim," by David Sedaris), called family, and cooked broccoli soup-from-scratch for dinner. Yes, I'm boring.

Tomorrow...
Digging out, and going for breakfast with Eric. Also, we're going to the craft/hobby store. I'm looking for another endeavor to take up. Karen has me inspired with her recent posts on knitting and crocheting.

Five Snacks I Enjoy...
Anything salty...nuts, corn chips and salsa, veggies and dip, stovetop popcorn, and salt and vinegar chips.

Five Bands Whose Songs I Know Most of the Lyrics To...
Green Day, The Beatles, and non-band musicians, Madonna, Fiona Apple, and Neil Young (although some of my favorites are from when he was with Crazy Horse).

Five Things I Would Do With $100m...
Anonymously donate to a whole slew of charities. Help my family. Buy back our family farm, and turn it into a family summer home/"gentleman's farm" with a few animals for fun. Buy a small farm and a home on the Big Island, and a condo on Oahu.
Travel.

Five Locations I'd Like to Run Away To...
Hawai'i. Alaska. Australia. the Galapagos. Samoa.

Five Bad Habits I Have...
Procrastination, being late, being irreverent, eating when I'm stressed, and not being the best at choosing my battles sometime.

Five Things I Like Doing...
Blogging, writing, reading, cooking, and running.

Five Things I Would Never Wear...
Fur, shoulder pads, tapered-leg jeans, anything pink, and high heels.

Five TV Shows I Like...
The Daily Show, Miami Ink, Aqua Teen Hunger Force, Spongebob Squarepants, and Paula Deen's Home Cookin'.

Five Movies I Like...
Kill Bill 1. Kill Bill 2. Eternal Sunshine of the Spotless Mind. Dogma. Monty Python and the Holy Grail. and (bonus) Silence of the Lambs.

Five Famous People I'd Like to Meet...
I met some once and wasn't impressed. Henceforth, I am satisfied with how I imagine they would be if I met them, instead of actually meeting them.

Five Biggest Joys at the Moment...
Eric, Makoa, Ku'uipo, my brother Andy's sense of humor, and the fact that everything is OK.

Five Favorite Toys...
My old, plugging-away computer, the CD player in my car, and my phone. We splurged and got each other RAZRs for Xmas. They were totally worth the price.

Consider Yourself Tagged...

community

2006-02-10T00:42:00.000-05:00

logging about cancer has played an important role in helping Eric and I deal with his relapse of leukemia. Writing here has allowed me to vent frustrations, share our bone marrow transplant experience, and receive support when we were feeling low. This blog has also introduced me to a wonderful community of people who have also been touched by cancer in one way or another. The writers of cancer blogs are incredibly giving souls who are sharing their stories in the hopes that it may provide some comfort (and a realistic point of view) to the newly-diagnosed and their loved ones. This online community is comprised of amazing and inspiring individuals.

The cancer-blogging phenomenon is a fairly new one, with many of the most popular blogs emerging within the past eighteen months. While there are more patients, caregivers, and loved ones choosing to share their experiences in this format every day, there is no definitive guide to cancer bloggers. With this in mind, I have created a webring for cancer bloggers. "The cancer ring" is an open community for anyone who has been affected by this disease.

To submit your site to the ring, please check out the "rings" category in the sidebar. All submissions will be approved by me before addition to the ring. Spam blogger, ad blogger, or blogger about astrology? Don't bother.

I welcome all of my fellow cancer bloggers to be part of this community.

lovely lady lumps

2006-02-09T01:04:00.000-05:00

ow that the transplant is over and Eric's condition is stable/in remission, I've been trying to take better care of myself. Exercising, eating right, and getting to know my new doctors here in Maryland have been pretty high on the priority list--but recently, during this process, I had a brief encounter with the old fear and dread that marked the early days of Eric's relapse.

I have had localized non-cyclical breast pain for well over a year now. The pain is not intense, and sort of comes and goes as it pleases without following any sort of pattern--and it always occurs on the far left side of my left breast and up into my underarm. But, oh, the tenderness that comes with it. Sometimes it is so bad that I can't do so much as hold a book to my chest on that side.

I first told a doctor about the problem over a year ago during my annual exam. She switched me to a low-dose version of the pill and told me to come back in three months if there was no change. A month passed, and then Eric relapsed. I wish I could say that I had a better excuse for not following up with my own health concerns, but the honest truth is that I forgot about taking care of it--I was spending hours at the hospital with Eric's doctors, how was I going to find the time to go to a different doc for myself?

Despite weight fluctuation, diet changes, different types of the pill (and then none at all after we found out that Eric would probably be sterile from the transplant), the pain persisted. So, I finally told my new doctor about it during an appointment last month. She dutifully trotted out the same old advice ("Don't eat chocolate or drink caffeine," and "Wear a really good bra"), but gave me a clinical exam nonetheless. She paused when she reached the area in question and said, "Hm. That feels funny. I'll order a sonogram..."

Meanwhile, I'm laying on the table in the most indelicate of positions, thinking, "WHAT!?! What do you mean, 'That feels funny?!?' WTF, woman!!"

Fast-forward to Tuesday morning. I left for the sonogram appt, running late as usual. I was really nervous. I hadn't told Eric anything about what was going on (he thought that I had an early meeting at work)--I didn't want to make him upset if it turned out to be nothing. And I soon found out that sitting through multiple tests and screenings with a loved one does nothing to prepare you for actually going through one yourself.

Once back in the dimly lit radiology room, I laid on the table, feeling like the science-project-of-the-week about to be dissected. The first tech came in, a woman about my age. She smeared the warm goop over my chest (it occurred to me that the scenario could possibly be a starting scene for a lesbian porno) and screened me with the wand. She found nothing. I was beginning to relax.

Then, the senior tech came in "just to take a peek." She began screening the offending area, when IT showed up on the screen. A large mass, large enough that she had to take 2 still-shots of it to capture the entire thing. She took at least 20 pictures of it, large and starkly white compared the grey image of the rest of my tissue, and shaped like a cocoon. The fear came back instantly--the look on the tech's face told me that this was NOT a normal thing to find. I managed to ask her if the thing on the screen was a cyst, and she responded, "No, definitely not...I have to get the doctor."

It took about 20 minutes to get a consult from the doctor. I was laying on the table, lights turned low, alone in the room with the stills of the mass staring at me on the screen. Trying to be brave, I tore off a part of my paper "modesty gown" and used it to wipe my eyes. I really didn't want the tech, or anyone else, to know just how freaked out I was.

All at once, the second tech and the doctor rushed in. "Nothing to worry about," said Doc, "I just see a mass of fatty tissue. Be more careful of how much chocolate and caffeine you intake, and take tylenol for the pain. Any questions?" At this point, my emotions were so high that I could barely squeak out "Yes" or "No" in response to his questions.

I left the clinic feeling reassured and somewhat triumphant, but now that I have had a few days to think about what happened, I wish that I would have asked some questions. Eric and I try to eat organics whenever we can, as well as cook most of our own food--including dressings, soups, etc. We don't eat a lot of mass-produced, preserved foods, and almost never have candy or soda in the house. I do enjoy coffee, but only drink 4-5 cups a week--and even that is a fairly recent development, as I drink it mainly to have something warm in my hands on a cold winter morning. For all of these reasons, I really don't think that the pain is diet-related. And finally, why, dear doctor, does that thing in the pictures look so different from all of the other fatty tissue in my breast?

I don't want to come across as a bitchy hypochondriac. Ever since Eric's relapse, I find myself swinging more and more towards that extreme: suddenly, every cough of his is a potential lung metastasis, every dry patch on his skin potential Graft-Versus-Host-Disease. But I'm sort of concerned that the doctor in radiology really didn't take that close of a look at my sonogram.

When does being an advocate for one's health cross the line into being a hypochondriac?

achievement

2006-02-09T00:49:00.000-05:00

fter much anticipation (and a bad case of nerves), Hubby has a new job! He will be working afternoons at our local Target, until we figure out whether we're staying in this area or moving later on this year. (He is still wistfully checking for National Park Service jobs in Colorado on a weekly basis.)

This is a small step for others, but is HUGE to us in so many ways. The new job will get Hubby out of the house and socializing with people who aren't doctors. Additionally, not having to be the sole provider for the family will make me rest a little easier. This job is one more notch towards the life we had before the relapse.

Inch by inch, we're moving back towards the realm of "regular couple"...and it feels GREAT.

thwarted and bushwhacked

2006-02-05T12:24:00.000-05:00

didn't cover that much mileage this week, due to the workday from hell on Thursday and subsequently coming down with a nasty bug. On Thursday, I hosted the first annual Job Shadow Day for our youth and teens, and the respose was incredible! Seventeen kids got the opportunity to shadow the job of their choice, and the selection was awesome. One of the teens got to sit in on a video teleconference with Donald Rumsfeld, and three of the preteens got a tour of Air Force Two, as well as getting to meet President and Mrs. Bush (this wasn't planned, but was a lucky coincidence--the helicopter landed right as the youth were finishing their tour).
Regardless of whether you support the administration's policies or not, it was unequivocally an awesome and exciting experience for the kids. I know that I've complained in the past about the DC area, but living here definitely has its perks. The event made for a long day for me, and I unfortunately woke up Friday with a startling inability to breathe without blowing my nose every two seconds. The evidence about exercising while sick is conflicted--but I didn't want to take a chance, so I took it easy. Here's the stats:

Days Running: twenty-two
Peak Weight: 222 lbs./100.7 kg
Current Weight: 220.5 lbs./100.02 kg
Miles This Week: four and 7/10
Total Miles: seventeen and 8/10

hundreds and hundreds

2006-02-03T15:09:00.000-05:00

ust a quickie post to let you know that I finally got around to finishing a "100 Things" list. It's very appropriate that the list is finished now because this is my 100th post!

Check my profile section in the sidebar for more details.

writings

2006-01-30T10:08:00.000-05:00

oday marks a new start for two online cancer forums. Real Cancer, Real Lives has moved to a biweekly schedule, due to recent lack of submissions. Minerva's hosting this week's carnival. Please check it out, and consider writing or hosting if you have anything to say on the matter.

Also, today marks the beta site launch of BlogHer, a community network of women bloggers from all around the globe. As a Health and Wellness contributing editor, I hope to bring the issues that cancer survivors and their caregivers face, as well as the sacrifices that they make, to a greater audience. Increasing (and sometimes correcting) public knowledge and perceptions about cancer has become greatly important to me. Sometimes, it's the only way that I can make sense out of what's happened.

Finally, I have gotten around to reading Lance Armstrong's biography, "It's not About the Bike: My Journey Back to Life." And I can honestly say that I'm not that impressed. Yes, he had advanced cancer and a long, hard slog to overcome it. He's done a lot to raise awareness through his philanthropic organization, and has even spoken to Congress about how the needs of cancer patients and survivors could be better met. He is to be commended for this. But in reading this book, I see example upon example of why he shouldn't be held up as the golden example of young cancer survivorship. Despite detecting abnormal medical signals six months before he finally saw a doctor, he waited until he could barely sit on his bike and was coughing up blood until he sought treatment. At the time of diagnosis, he was making $2 million/year and had a lovely home and various accoutrements that the average person just doesn't have. He had doctors fighting over who got to treat him. After his initial surgery, Lance was rude to his nurses and didn't listen to his doctors' advice (personal sidenote to Mr. Armstong: If you insist upon riding a bike when your red cell count is only 7,000, you're going to pass out on the side of the road. It doesn't matter how strong your muscles are, if there aren't any red cells to transport the oxygen to them, you're gonna pass out! Listen to your doctors, dammit, and REST!)

I'm not even finished with the book yet and it's already made me more determined than ever to put the "real story" out there. Every cancer patient's story is different...but can a millionaire professional athlete who doesn't listen to his docs be the best spokesperson for the young adult cancer experience? I really don't think so...

numb

2006-01-29T15:18:00.000-05:00

n recent times, a new and confusing development has occurred. We've gotten through the most difficult phase of Hubby's treatment no worse for the wear. His hair and rosy color have come back; and people are no longer able to tell that he's been in cancer treatment just by looking at him. I've been back at work for about two months now; Hubby doesn't even need to go to the doctor every week now. We have so much to be grateful for.

So why do I feel so dead inside? In trying to return to normalcy after leaving Johns Hopkins, I attacked everything in my life head-on. I dove back into work, desparate to prove myself to those who were offended about taking three months of medical leave so soon after starting my new position. I made sure that Hubby was properly tagged and had his medical records readily available at all times. I drove him to a hospital two hours away for his blood transfusions at the bidding of our insurance company. I was taking charge and kicking ass.

And now...I just don't care. I don't care about my job--going through the motions has become the order of the day. I haven't been keeping up with friends and family like I know I should. The apartment's getting dirty, I wore the same shirt to work three days in a row (it was my uniform shirt, but I never used to do this)...I know that I should take care of this stuff, but I just think, "Eh!? So what..."

I find myself undertaking so many daily tasks at this time under this mindless haze...

this isn't the way this is supposed to work...

2006-01-29T14:08:00.000-05:00

K, I've completed week two in my yearlong running assignment...and according to the scale, I managed to gain back the two pounds that I lost during the first week. I've never had the best of luck with weight control...I'm one of those people who can walk by a bakery and put weight on, but this is the first time that I've heard of someone gaining weight while running 4 or 5 days a week. Maybe it's sexy muscle on my legs.

The good news is that I found a training plan that seems quite realistic. I've been getting a lot of conflicting advice on running, as well as some that seems questionable--including training seven days a week and taking lot of supplements (eating that highly-processed, chemical-laden stuff just doesn't seem all that healthy to me). Finding a definitive training plan that's designed for a novice AND takes into account that some people just can't work out seven days a week, 365 days a year, has been a relief. As I'm entirely new to this, any advice is welcomed.

So here's the numbers for the week:

Days Running: fifteen
Peak Weight: 222 lbs./100.7 kg
Current Weight: 222 lbs./100.7 kg
Miles This Week: five and 9/10
Total Miles: thirteen and 1/10

profession, confession

2006-01-26T09:54:00.000-05:00

ubby and I are so lucky in many ways. We had a lot of support throughout his treatment, and are now fortunate to have gotten through most of it with no complications.

March 20, 2006 will mark the six month anniversary of the transplant. According to his doctors, if Hubby makes it to the half-year mark with no problems, the chance of developing complications later on diminishes greatly. At six months post-transplant, Hubby will be able to find a job and otherwise go back to living life as he did pre-relapse.

The prospect of a "normal" life is amazing to think about, and I'm so thankful that we are getting close to this milestone with nothing to hold us back. However, reassimilating back into a life without doctors, transfusions, and 20-odd pills/day has presented its own set of challenges; the most notable one being Hubby's employment.

Directly after graduation from college, he had followed my job out to Oahu. Hawaii is paradise, but the heavy competition in the job market there was not something that either of us had prepared for. Apparently, the islands are a mecca for Environmental Studies graduates; every job he applied for ended up having hundreds of applicants. Hubby ended up taking a temporary job with the Post Office, and was promptly let go when the relapse occurred (his temporary status prohibited him from taking action about this). In May, we relocated to the DC/Baltimore corridor, and have spent most of our time since then in "transplant mode."

So now that the medical concerns are not immediate, and Hubby now has his health and energy back on a tenous basis, he has begun to look for a job. The chips are stacked against him before he even starts--we are in a new city, with few local contacts other than my coworkers and our doctors. I could help him go through the application process for low-level federal employment (I don't have much pull, as I'm a mid-level peon myself), but I'm looking to leave federal employment (or at the least, military employment) by the end of 2006. And even if he did find something that he was genuinely excited about applying for (i.e., NOT an "inside-the-Beltway" lobbyist paper-pusher), how would we explain the year on his resume with no employment? When the interviewer asks why he left his previous job, what will he say? Hiring laws prohibit asking about medical conditions as a condition of employment--but this "condition" has left such a large imprint in our lives that talking around it would be akin to talking around the Grand Canyon.

Where do we go from here?

a note to my boss

2006-01-23T23:08:00.000-05:00

xcuse me, Ma'am? Do I have your attention? Good.

Please don't ever refer to the time that I took off to act as Eric's caregiver as my "vacation" ever again.

Yes, I know that when you look it up in the thesaurus, "vacation" is right there with "sabbatical" and "leave of absence." But your choice of words has resulted in several people asking me, "Where did you go while you were gone?" and, "Did you have fun?"

Granted, those people aren't the ones that we work with on an everyday basis--but the word "vacation" implies beaches, recreation, and freedom. And you are trivializing the hardest three months of my life when you refer to the transplant that way.

So, please stop. Now.

Thanks.

weekly update #1...

2006-01-22T15:36:00.000-05:00

therwise known as "how the hell did I get this out-of-shape?"

I'm done with my first week of training for the marathon, and let me tell ya, I'm gonna need all 12 months to get ready for this.

Stats for this week are:

Days Running: eight
Peak Weight: 222 lbs./100.7 kg
Current Weight: 220 lbs./99.8 kg
Miles This Week: seven and 2/10
Total Miles: seven and 2/10

Also, if you have anything to say about cancer, please consider contributing to Real Cancer, Real Lives! The next carnival will be hosted by the wonderful Minerva on 29 Jan. This is a great project that introduced me to a lot of talented bloggers--check out the archives to read past editions.

conundrum

2006-01-18T10:00:00.000-05:00

t's funny how things work out sometimes. Yesterday, I was reading Minerva's latest post, where she was debating whether or not to take up an opportunity to spearhead a cancer awareness project. Last night, a similar opportunity fell into my hands--I've been offered an unpaid Health and Wellness columnist position on an up-and-coming e-zine/collaborative blog. And while I'm thrilled about having a new opportunity to tell people about what it's like to have cancer when you're in your early twenties, I'm a bit apprehensive.

I feel that people need to know about what happened to hubby and I--but at the same time, I don't want to contribute to the "survivor worship" mentality that is so prevalent. I don't want our story to become one of those "human courage" crap-stories that downplay the devastation that cancer breeds.

I want no part in the devaluation of other's feelings--the worst thing to me is when someone says, "Oh, well, so-and-so got through this just fine, and you will too." Every person's experience with this disease is unique. Each patient should be allowed to work their own way through the effects of a cancer diagnosis, and their reactions and emotions should be justified by those who support the patient.

And so, while I am so excited about raising cancer and survivorship awareness to a new audience, I have mixed emotions about this new opportunity...

adoption

2006-01-16T16:53:00.000-05:00

elcome to the latest addition to our family, Ku'uipo! She was brought home from our local Humane Society this afternoon. Ku'uipo is eight months old and has spent most of that time at the shelter. Her name is "sweetheart" in Hawaiian, and so far she has lived up to her moniker.

All of this fuss over a cat may seem strange to some, but Makoa (Ku'uipo's housemate) truly helped to raise our spirits when they were lowest. The effect that a friendly animal can have on the psyche is truly amazing. Much of the recent uplift in my own mentality can be attributed to having Makoa back in the house (our oncologist had us put him in "foster care" while Hubby's blood cell counts were very low).

Please join me in welcoming Ku'uipo to our family.

dichotomy

2006-01-15T20:21:00.000-05:00

his weekend marked the start of accomplishing two goals that couldn't be more opposite. In the only meme that I've ever done, I announced that one of my goals was to learn to make decadent desserts. My foray into baking started with Flourless Chocolate Cake, which is composed of 1 cup butter, 1 cup semi-sweet chocolate chips, 1 cup of sugar, and 4 eggs. This sounds simple, and was, until I got to the part when I was supposed to whip the egg whites and half of the sugar until stiff peaks formed. I beat those damn egg whites like a red-headed stepchild, but they would not stiffen up. Consequently, my cake turned out kind of flat and brownie-like, but I covered this up with a large garnish. (This is kind of cheating, but hey, it works for me.)

My treadmill also came yesterday, and hubby and I got it set up today. This is Day 1 of the Marathon Project, and I'm glad that I'm giving myself 12 months to train for it. I think that I'm going to need as much time as I can get--I really let myself go over the past year, gaining more than 40 lbs. But this project is about something far bigger than me: I am running for every man, woman and child who has been affected by leukemia. The money that I raise through this could help several families pay for blood product expenses, travel, or housing near their medical facility. The sweat and pain is all for them, and for cancer patients everywhere.

Stats as of 15 Jan. 06 are:
Days Running: one
Peak Weight: 222 lbs./100.7 kg
Current Weight: 222 lbs./100.7 kg
Miles This Week: one and 3/10
Total Miles: one and 3/10

reminder

2006-01-13T01:12:00.000-05:00

oday was a beautiful, gorgeous day in the d.c. area. The air was warm, the sky was blue, and the sunbeams beat down everything in their path.

Highly unusual for the middle of January, but hey, I'll take it.

The weather made me downright giddy today. Driving to work with my windows down and Israel Kamakawiwo'ole crooning from the stereo, I had a goofy grin affixed to my face for the better part of the day. Nothing could get me down.

Today, I realized that I was utterly, joyously happy for no good reason at all...and I also realized that it's been a long time since I'd felt that way. Hubby is doing great. In fact, this week was the first week since the transplant that he didn't need to receive any blood products whatsoever. We have so much to be thankful for right now--and we're both learning to let go of the apprehension and anger to make room for joy.

And then, to cap off my day, I came home and found the best blonde joke ever. Before anyone gets up in arms, let me say that I harbor no ill will against the fair-haired; in fact, I bleached my own out during the transplant because I figured that I'd never been blonde before and now was as good a time as any. It took me a while to get the joke, but when I did...let's just say that it's the first thing that made me genuinely laugh out loud from the internet in a while.

Here's hoping that the happiness and laughter spread...

What are the little things that make you giddy with joy?

good thoughts and cheer

2006-01-11T08:49:00.000-05:00

n light of the NBC News piece on the general misery and malaise of the American public, I figured that I'd do my Girl Scout "Good Deed for the Day" and try to cheer up my little corner of the Internet. This cheerleading chant comes to us from Cancer, Baby, who is need of some cheering-up herself after some recent treatment complications. Please stop by her site and leave good thoughts.

Ready? Okay!

You might be good at spreading
Fast and far and wide (clap)
But it's not you we're dreading
So you'd better step aside (clap)

Yeah, Cancer, you don't scare us
You don't give us pause (clap)
'Cause the foe that just won't spare us
Is the cancer rah-rah cause (clap)

They cheer and shout and scream on high
And drown out every voice (clap)
While ill folks live and ill folks die
By drugs and luck, not choice (clap)

They talk of war and they live strong
They tell us, "fix your 'tude!" (clap)
They think we'll beat you 'fore too long
If we just change our mood (clap)

Perhaps without them, Cancer
There would be less to fear (clap)
They think they have the answer
Then kill us with their cheer (clap)

So listen up all mood police
We're taking back our pride (clap)
We need our dignity and peace
No matter how we die (clap)

Meanwhile we won't take your shit
Won't take it on our chins (clap)
If you quit yapping just a bit
We'll sport some fucking grins (clap)

faux everything

2006-01-10T08:54:00.000-05:00

ram is going for her second chemotherapy treatment tomorrow. She is receiving cytoxan and two other medications that I'm not familiar with. She dealt with her first treatment well enough (even though it occurred right before X-mas), although hopefully, the cumulative effects of the treatments won't knock too much wind out of her sails. I think that the toughest part for Gram is that her appearance has been greatly affected--her hair is already gone (even I was shocked at how quickly this occurred) and lymphedema is causing her right arm to swell to unrecognizable proportions. She bought some saucy new wigs and some hats from TLC, a subsidiary of the American Cancer Society who specializes in products for breast cancer patients. The effort to combine everything that a patient might need into one catalog (and keep it all affordable) is greatly appreciated, so please check them out if you or someone you know is in the market for a wig or similar equipment...

Also, it's National De-Lurking Week, and there are a lot more hits to this site each day than there are commenters. So please speak up and make yourself known!!

on the passage of time...

2006-01-08T20:08:00.000-05:00

oday was the first day since hubby and I were living in Baltimore that we had the opportunity to just sit, vegetate, and watch television. During the course of our lazy morning, I noticed two things: There's not very much on television that's worth watching right now, and most importantly, there's an awful lot of advertising dedicated to stopping the aging process. Advertisements for creams and cosmetics for all sorts of body parts promise to "fight the seven signs of aging" during SpongeBob Squarepants. A Google search for the term "stop aging" yields a wide assortment of vitamins, books, nutritional supplements, and surgical procedures, among other items. Millions of dollars are spent on these products annually--the sheer prevalance of the advertisements are testament to the income earned from people trying to stop the inevitable.

All of this begs the question, "Why DO people buy these products?" Being fearful of the passage of time is a fruitless process. Perhaps those who drop $30 on a bottle of Olay believe that every wrinkle erased is equivalent to postponing the end of their time by one more day. For those of us who have experienced someone's struggle to survive firsthand, the notion that a bottle of cream or jar of tablets will put off the unavoidable is a load of rubbish.

I, for one, plan to revel in my wrinkles and accent my gray hairs, for I know that they become a privilege after you've lost your hair to chemo. Hubby and I look forward to being the active, eccentric septagenarians at the end of the block who are still living life to the hilt 'til our time here ends. We plan to celebrate life, and to celebrate the opportunity to grow old together.

Wrinkles be damned.

third strike and it's out...

2006-01-06T10:36:00.000-05:00

s someone who's experienced the effects of cancer during her young adult years, I feel that one of my callings is to be an advocate for others who are in the same boat. Patients in their twenties and thirties have a whole other set of concerns as opposed to the "traditional" cancer patient in their fifties or sixties. To help get the word out, I've been submitting to the Op-Ed sections of different publications. This essay's been rejected by three publications, so now I'm sharing it here.

Twenty-four: Young, Fabulous, just out of college, and diagnosed with Leukemia

February 19, 2005: the day that would change everything started out like any other. My husband, after some difficulty landing a job post-college, had gotten a break with a seasonal position at the post office and was hard at work by four o’clock am. I slept in a little; the youth center where I worked was hosting our annual carnival for the local military community, and the preparation hours had been long. As families, coworkers, and I arrived to the fairgrounds, the scents of cotton candy and funnel cakes permeated the air as children happily shrieked while on the rides. The mood was relaxed and celebratory.

I started to walk across the grounds, and in the corner of my eye, I saw a car race through the parking lot and screech to a halt. When I noticed that the maniac in question was my husband, he was running down the midway at full tilt. When Eric reached me, the look on his face said it all: he collided with me and told me the news between sobs and gasps for air. A routine physical for his new job had revealed that his white blood cell count was approx. 175,000. The normal range is between 4,500 and 11,000. Eric’s leukemia had returned with a vengeance.

Cancer is a terrible disease for anyone it touches. For every inspirational survivorship story like Lance Armstrong, there are many more people who fight the fight but don’t make it in the end. There are few other diseases that devastate the afflicted so thoroughly. For those who do beat cancer, overcoming the physical disease is just the beginning as the patient then has co-pays for months and months of medical care, prejudice in finding new employment post-treatment, and the lingering secondary effects of harsh but necessary treatments.

The devastating effects of cancer are compounded greatly when young adults are affected. I had chased the only post-college job offer I received to work for the Air Force in Oahu, and Eric had followed me there immediately after his college graduation and our wedding. Five thousand miles away from our families, we were forced to end the honeymoon early and negotiate a confusing system of specialists, referrals, and prescription-drug benefits. While learning to clean Eric’s chemotherapy catheter and giving him growth-factor injections, we often had to deal with being treated differently by the hospital staff as the youngest adult patients on the floor.

Eric and I have good health insurance through my job, but were still hit with $300-$400 co-pays each month that were a struggle to pay with my entry-level salary. When we went to our local Social Security Office to apply for disability, Eric was immediately turned down for all benefits when it was determined that he hadn’t worked enough to accumulate the necessary forty S.S. work credits. (When we asked the representative how Eric was supposed to have worked enough to obtain the credits while having cancer twice since 1999, just graduating from college, and only being 23 years old at the time of application, the answer was, “I’m sorry that there is no policy to address your concerns…please write your Congressman.”)

When the news came that we would need to go back to the mainland for a bone marrow transplant, the stress of getting our few possessions, our cat, and ourselves to Maryland was added to the mix. The pressure of performing at my job, acting as a caregiver and advocate for my husband, making arrangements for the move, finding a new job in the vicinity of Johns Hopkins hospital, keeping our family members and friends posted on Eric’s condition, and caring for household duties took its toll on me. I struggled to do it all and felt that I was succeeding at nothing.

However, in meeting other 20- and 30-something cancer patients, I realized that Eric and I were luckier than most. We did not fall into the gap that many people our age experience. One of us had gotten a job with a full benefits package immediately after college. Young adults just out of college are the most likely to be uninsured or underinsured-too old for their parents’ plans and not established in careers with full benefits. Also, our health insurance was willing to pay for Eric’s bone marrow transplant, no questions asked. Many leukemia and sarcoma patients have their claims denied after cutting-edge treatment that may prove to be life-saving is deemed “experimental.” In a shockingly generous gesture, our hometown church organized a benefit dinner to help raise funds that could be used for paying our co-pays, prescriptions, and medical equipment expenses not covered by insurance.

While Eric and I are thankful for the breaks we’ve gotten during our journey with leukemia, the added difficulties of being a cancer survivor in early adulthood have made this a disheartening experience. We still haven’t figured out what Eric will tell potential employers about the significant amount of time after college when he wasn’t working.

My husband’s first leukemia treatment, in 1999, was at a pediatric hospital that did not explain options for preserving one’s fertility. A pre-marrow-transplant fertility test last July confirmed that, at the ages of 24 and 25, we will never have the opportunity to have children. All cancer patients, even those in their teens, should be made aware of their fertility preservation options.

The special concerns of young adults with life-threatening illnesses need to be addressed by our nation’s leaders. The high cost of treatment (even when one is insured) is problematic for all patients, but is a double whammy for recent graduates with loads of college debt, entry-level salaries, and little or no savings. Blocking Social Security disability to young adults is another financial hit that no cancer patient should have to face.

Each year, 150,000 people between the ages of 18-40 are diagnosed with cancer; it’s also the leading disease killer among 20-39 year-olds. It’s high time that the unique needs of the many young adult patients and survivors are no longer ignored.

team andrax

2006-01-04T22:49:00.000-05:00

hroughout the blogosphere, there are so many unique and caring souls that I've had the good fortune of bumping into during this journey. I had the opportunity to find and participate in a unique volunteer project today--assisting the cancer research team andrax.net. Thanks to Tree of Decadent Tranquility for sharing this.

Andrax.net is a virtual community of persons who are donating their extra CPU cycles to a centralized system named grid.org. Grid.org then uses those cycles for molecular analysis, including cancer research. It is the hope of the research team that these molecules may one day lead to new and improved cancer medications.

Please consider donating your extra CPU cycles to this worthy cause. Grid.org's security information can be found here, along with additional information about the research project. Download the UD Agent, then follow the instructions to join Team Andrax.

a new look!

2006-01-03T18:50:00.000-05:00

in the name of creating a quality blog, i recently submitted my url to several blog-reviewing sites. yesterday, i was lucky enough to get this site inspected at i talk too much, a site that is well-known for mercilessly ripping bad blogs to shreds. and i got a good review!! the content got four out of five smacks, and overall i got three out of five smacks.

my critic raised an important point, though (the one that cost me the score of four overall smacks)...the small text size and white-text-on-black-background of my previous template made the site difficult to read. this was something i had never thought about--when i go about picking a look to match the words, i was looking for something simple, darker in tone, and elegant. after talking with a few of my friends, they confirmed the opinion of my i talk too much critic.

so, please let me know what you think of the new template. font size is larger, text background is lighter grey, and hopefully i won't be making you all go blind anymore...

real cancer, real lives #10

2006-01-01T13:45:00.000-05:00

hello and welcome to the tenth edition of real cancer, real lives!
this blog carnival is a continuing effort of patients, caregivers, and medical bloggers to document what living with cancer is really like. the goal? to bust through the misconceptions about this disease that are perpetuated by the media and those who've been lucky enough to have never had to deal with it.

patient blogs

glori at cancer portrait wrote this introspective post about how cancer has changed her perspective and the way she defines herself.

dana, the author of journey through breast cancer, wrote this post about the truly awesome holiday gift of being finished with her treatment.

dalene at rutabaga stew at wayward waif composed the post, "cancer go away," which is a sentiment that we can all relate to. this post contains a helpful primer for those who were recently diagnosed.

minerva, the author of a woman of many parts, submitted "neither christmas nor new years…," a post reflecting on the inner strength and fierce determination that she has developed during her journey with breast cancer.

caregiver blogs

cary over at cancer news watch announces a landmark in cancer reseach--the national cancer institute just announced a plan to map the entire cancer genome. this project will lead to prevention and improved treatment for all types of cancer, and may even lead to specified cancer prevention.

medical blogs

hsien hsien, contributor to the genetics and health blog, writes this post about the increasing importance of sucking it up and eating your dark green vegetables. looks like mom was right after all.

real cancer, real lives needs you!

if you’ve enjoyed reading this week’s carnival, please visit the real cancer, real lives home page and read more about how you can host the carnival or submit your cancer-related writing. there has been a dearth of both hosting volunteers and post submissions lately—and we don’t have the holidays to use as an excuse anymore. please get involved!! by starting this carnival, cary and lori have created an open, honest forum for anyone who is affected by cancer. won’t you help out?

e-mail cary to sign up for a date to host the carnival. currently, 16 and 23 january are available, as are all dates in february.

submit your posts at the blog carnival submission form (please make sure that "real cancer, real lives" is highlighted in the "choose your carnival" box).

i hope that you enjoyed this week’s edition of the carnival. please check out next week’s carnival at cancer portrait.

real cancer, real lives

cancer

in the name of new beginnings

2005-12-31T19:52:00.000-05:00

later on tonight, hubby and i will be attending a new year's bash with our dear old friends from high school. this is a somewhat regular occurrence as our group always tries to make even the routine get-togethers as festive as possible.

however, this won't be the typical new year's party, for 2005 hasn't been a typical year. no, instead of dick clark and the ball in times sqaure, instead of the old man making way for the brightly smiling babe of 2006, we are going to have fire. a bright, hot, cleansing fire--with 2005 calendars as fuel. the theme for tonight, my friends, is "say goodbye to a shitty year." while we watch the paper slowly return to ash and dust, the many doctors' appointments, hospital stays, tears, and frustrations of 2005 shall dissolve from our minds and hearts. we will start 2006 with renewed strength and determination. this is the year that the world becomes ours. this is the year that we shall beat cancer.

happy new years to you all, and i will burn a calendar for each of you...

marathon update

2005-12-28T08:28:00.000-05:00

the preparation for the 2006 honolulu marathon has begun! i start training next week, and i finally found a user-friendly method for leukemia/lymphoma society donations. the donations will not be collected through the "team in training" marathon program, but will instead be directed to the society's national campaign to be distributed to chapters across the country.

oh, and one more obstacle...the marathon begins at 5:00 am hawaiian standard time. 5:00 am?!? i'm usually not out of bed before 8:00, let alone running 26 miles. but if there was ever a cause that was worth hauling my ass outta bed for, this is it.

see the header "running for a cause" in the sidebar for more details.

bah, humbug

2005-12-27T00:34:00.000-05:00

i am a mean, heartless, even shocking person.

or at least i was while christmas day was being ushered into north america.

at a friend's house, i was reconnecting with some dear girls from school whom are in fact more like sisters to me. although we don't see each other often anymore, these three are the people in my life with whom i can sit down after months of being apart and immediately pick up where we had left off. no topic of conversation is taboo and we have seen each other through all of the ups and downs of the past 15 years.

we were chatting around a christmas cake in the kitchen. good company, food, and spirits reflected the downright jolly atmosphere. the four of us were taking turns discussing our plans with family for later on that day, when the following exchange brought the gaiety to a grinding halt:

"so, amanda, what are you doing with family for the holiday?"

"well, we are eating at my gram's...i was worried about her hosting a meal for so many when she's not feeling well, but things seem to be falling into place..."

"wait--what's wrong with your gram?"

"oh, i didn't tell you? we found out that she has breast cancer."

(insert various random expressions of disbelief and hopes/wishes for her health to return here)

"well," one friend continued,"i'm sorry that this happened to her after everything else..."

i took a breath and didn't quite know what to say. it's funny how one can travel this road so many times and still feel totally unrehearsed.

"well...what can you say? shit happens."

all three stopped what they were doing and looked at me in disbelief. all of the sudden, the air was heavy with the unspoken...

"that's a hell of a thing to say!"
"how could you say that about your gram?"
etc. etc.

but the more i thought about it, what WAS i supposed to say? yes, it stinks that cancer struck the two people closest to me in one year. yeah, it's not fair. yes, i am very worried for her...her cancer is highly treatable, but she has several other factors working against her that will help to determine the outcome of her treatment. i could have expounded on the fine details of gram's cancer for a half hour or more, but i doubt that any of it would have been what my friends wanted to hear.

since i so egregiously broke the unwritten rules of Discussing Cancer, i have a question to pose to the various friends/acquaintances/family members who haven't travelled this path and expect me to make the same old small talk about how (insert patient's name here) is "doing so well in spite of his/her treatments..."

WHY THE HELL SHOULD I HAVE TO SUGARCOAT ANY OF THIS FOR YOUR BENEFIT!?!?!?

synopsis

2005-12-22T09:45:00.000-05:00

2005 was an eventful year, a year full of manic highs and bone-crushing lows. what a difference a year makes: last new year's eve was spent in a carefree haze, watching the fireworks from our 22nd-story apartment in pearl city, oahu, calming down killer and thug (our pet rabbit and kitty, respectively). a year later, we are living in yet another new city, 5,000 miles away from our last hometown; our charming little apartment over pearl harbor belongs to someone else; and killer and thug are no longer with us. the return of hubby's leukemia has influenced every facet of our life in a way that is truly mind-boggling. following is my meager attempt to quantify the sea change that was 2005.

january: after six months of scrimping and waiting, hubby and i finally went on our honeymoon to hawaii volcanoes national park. a truly magical week of hiking, marshmallow roasting, and snuggling together to beat the nighttime temperatures of 30-40 degrees ensued.

february: after ignoring some now-ominous signs, and a misdiagnosis by an idiot of a primary care physician, hubby's relapse was diagnosed on saturday, the 19th. treatment started the following wednesday.

march & april: hubby began a routine of one week inpatient at the hospital, and one week off. it wasn't planned this way, but there were several complications along the way that mandated his hospital stays. when traditional chemotherapy regimens failed to cease the production of blast cells, a marrow transplant was deemed necessary. our wonderful oncologist subsequnetly began the process of enrolling us in the john hopkins transplant program. the pressure of performing at my job, acting as a caregiver and advocate for my husband, making arrangements for the move, finding a new job in the vicinity of johns hopkins, keeping our family members and friends posted on hubby’s condition, and caring for household duties took its toll on me. i struggled to do it all and felt that i was succeeding at nothing.

may: on the third, hubby and i got our official orders to report to a military base near washington, dc. move date was the 30th--we only had 27 days of lead time during the height of pcs season (when most military members and affiliates move to new bases) to make all of the necessary arrangements to move (the standard is 60 days). much hilarity ensued.

june: hubby, thug, and i arrived in maryland, i started my new job, and we met the head of our medical team in baltimore. (killer was adopted by a dear friend of mine on oahu, as many commercial carriers will not allow rabbits to fly.) we also adopted a new kitty from our local humane society, makoa. we spent less than a week in temporary housing, and began patiently waiting for our furniture, clothes, and car to arrive off of the cargo ship. it all came during the last week of the month.

july: after receiving some startling letters from the national bone marrow registry ("there is not a complete match for you in our database at this time"), our medical team decided to go with a non-matched transplant. hubby's older brother, jeremy, agreed to be the tissue donor. i broke the news to my new employer, who was understandably concerned but not too happy. we settled into our new apartment.

august: medical tests, medical tests, medical tests. oh, and when we weren't running back and forth between three medical facilities, i organized my first two major events at work: a week-long theatre camp and a family fitness day. also, hubby and i began making the necessary arrangements for our temporary move to baltimore (our third move since may). thug, the best feline to have ever graced either maryland or hawaii, passed away prematurely from feline infectious peritonitis.

september: with the tranplant date looming in our minds, we did what any responsible adults would do: we ditched town and went to the beach for labor day weekend. hubby and i learned how to pick boiled crabs, got our pictures taken on the boardwalk, swam in the ocean until we were quite happily sunburnt and exhausted, and capped off the whole experience with a hand-in-hand walk up the beach. we moved to baltimore to begin the transplant process the following friday. after two weeks of premeds, september 20 was the apex of our existence: this was the day that we had been preparing for since march. it was also this day that would change our lives forever afterward. the one-liter bag of marrow that dripped into his veins at a maddeningly slow rate was hubby's last chance.

october: hubby spent the entire month in baltimore. i was there as caregiver during the week, and went back to waldorf on the weekends to work and check on our other apartment while his dad watched over him. hubby became neutropenic due to the meds, forcing us to stay inside and sterilize everything we could. the neutropenia proceeded to permanently warp the way we viewed the world.

november: hubby's white cells came back!! our release date from the transplant program was 23 november. his red cells still were lagging, but arrangements were made to have him monitored at a local facility. after thanksgiving, i returned to work.

december: hubby's new marrow had trouble making the proper amount of red blood cells. (this is still ongoing, but getting gradually better.) his hair is coming back. in three short months, he will be able to start looking for work--and we might start actually being able to pass for a "normal" couple.

one never plans to come down with a life-threatening illness. our lives, as have many others, took many unexpected turns in 2005. leukemia has moved us across the country, changed the direction of our careers, and forced us to postpone or altogether cancel our long-term plans. it challenged the patterns of interaction that had been laid out during the first months of our marriage.

hubby's relapse contested our priorities. i don't equate "what i do" with "who i am" anymore. much to my supervisor's dismay, it's just not worth it to me anymore to put in long, unpaid hours in the name of advancement and success. my success--no, my LIFE--is at home, cozied up under his favorite quilt, getting stronger and healthier every day.

to those of you who are still reading this manifesto, if you carry nothing else away, please remember this: never take anything for granted. although we would like to believe otherwise, human beings' mortality is a fragile thing. there is no guarantee that you will wake up to see tomorrow--and it doesn't matter if you always wear your seatbelt, eat your veggies, or floss. the only way to truly acknowledge this fact is to live each day as fully as you possibly can. eat a cookie for breakfast every once in a while. do something random and crazy at least once a month. reconnect with old friends. challenge your own boundaries, fears, and prejudices. you may not get the opportunity to do this tomorrow, a week, or a year from now.

some say that i now harbor a preoccupation with death. i would argue that i have just begun to live. in the name of new life, happy holidays to you all. may 2006 be a much brighter year than 2005 was.

inspiration

2005-12-18T23:39:00.000-05:00

the following is an excerpt from one my favorite poems, "still i rise," by the esteemed maya angelou. although the poem was originally intended to describe the african-american triumph over slavery, the text runs much deeper and serves as a template for the attitude that hubby and i have tried to maintain throughout his treatment. please read, share, and i hope that you may draw the same strength from these words as i have.

You may write me down in history
With your bitter, twisted lies,
You may trod me in the very dirt
But still, like dust, I'll rise.

Does my sassiness upset you?
Why are you beset with gloom?
'Cause I walk like I've got oil wells
Pumping in my living room.

Just like moons and like suns,
With the certainty of tides,
Just like hopes springing high,
Still I'll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops,
Weakened by my soulful cries?

Does my haughtiness offend you?
Don't you take it awful hard
'Cause I laugh like I've got gold mines
Diggin' in my own backyard.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I'll rise.

acs web badge

2005-12-16T08:27:00.000-05:00

you might have noticed the american cancer society web badge that i put up in my profile box earlier this week. the specifics of this particular project is to create an online awareness community. here's the fine details, courtesy of acswebbadge.org.
What does it mean to say "I Fight Cancer"?

"When you display an "I Fight Cancer" badge on your blog, you commit to one or more of the following:

-Write a blog entry on your experience with cancer (click here for ideas)
-Invite 5 bloggers to display the badge
-Talk to your friends and family about getting screened for cancer
-Wear a matching American Cancer Society wrist band
-Get involved in local American Cancer Society events and programs, like Relay For Life or Making Strides Against Breast Cancer.
-Or, make a donation."

since i already have #1 covered, this is my challenge to you: be one of the next five blogs to display this on your site! there are seven different badges to choose from. i chose silver for cancer survivors because there wasn't a leukemia badge.

please consider posting this to you website.

<---end of public service announcement--->

update on gram

2005-12-15T00:22:00.000-05:00

my gram had her first appointment with the oncologist who's responsible for her chemotherapy regimen today. she will be on a three-drug cocktail, to be administered once every three weeks for six months. gram either couldn't remember or didn't want to share her medication list, so i don't know exactly what she will be getting.

although i consider hubby and i well-versed in the minutaie of cancer treatment, it amazes me how much treatment regimens can vary for different types of the disease. i feel as this is a whole new experience, and am sorry that i can't answer more of her questions.

she's going into everything with a feisty attitude though. she's already planning a family do-rag decorating contest, and has several wigs picked out in case her hair falls out (one of her top selections is a short, red, curly one; red is not her natural color, but she said she wanted the "lucille ball look.") attitude alone won't be enough to carry her through this journey--but it's a good start.

good news!

2005-12-14T09:22:00.000-05:00

cary over at cancer news watch has just given my husband and i the best xmas present ever--the national cancer institute just announced a plan to map the entire cancer genome. this could mean prevention and improved treatment for all types of cancer, but is especially meaningful for acute leukemia patients, as that cancer is almost entirely genetic in cause. finding the genetic aberration that results in marrow spewing out blast cells could mean an END to leukemia for good. maybe we'll see the eradication of leukemia in our lifetimes--what an incredible idea to think about.

read more here.

real cancer, real lives #9

2005-12-11T09:48:00.000-05:00

real cancer, real lives #9 is up over at a woman of many parts--and this one is a doozy. please go and check out the humorous, angry, and poignant posts that make up this week's carnival. and if you'd like to submit for next week, you may do so here.

update: today is the first day that hubby was able to wash his hair with shampoo! after being bald since march, this is a major accomplishment. :)

run amanda run

2005-12-10T21:59:00.000-05:00

my plans to conquer the 2006 honolulu marathon in the name of leukemia research and patient support has hit a bit of a snag. after a few days of playing phone tag with the wonderful directors of the maryland team in training chapter, i finally got the news that my chapter does not have a team to go to hawaii. the only winter 2006 events that the maryland chapter sponsors are in arizona and florida (neither of them shabby places, but i don't have good friends to visit in phoenix or orlando).

since i am determined to run this marathon to benefit the leukemia/lymphoma society, i now have several options to explore: i could try to sign up with either the virginia or washington d.c. chapters, if they have a team going to honolulu, i could try to sign up with the honolulu team and not meet them till the week of the race, or i can run as a community fundraiser. although the latter is the least attractive option, i think that it may be the course that i end up taking. don't get me wrong--fundraising for this cause in any capacity would be an honor--but if i go as a community fundraiser, i wouldn't get to train with any of the teams. running that much by myself might get a bit lonesome.

i am currently indulging in one last bacchanalian holiday season before i start training 3 january. there's a treadmill (a hand-me-down) and a bathroom scale waiting for me under the tree. after these last days of eating what i want, when i want, on day one of training i switch to the big breakfasts, 50/50 carb-protein combos, and mini-meals of the runner. i'm starting with one mile/day, with a starting mix of 50/50 running/walking. (yeah, i know that's nothing...but i really let myself go this year.) the goal is to be at a five-mile running clip by 1 july. weekly progress will be posted here each weekend.

more to come...

if you read it on the internet, it must be true

2005-12-07T23:17:00.000-05:00

in the midst of late, LATE-night baking for a potluck at work later today, i came across this article on msn. granted, the site's credibility as a newsource is somewhat questionable-it's devolved over the years from featuring mostly news articles to currently being very heavy on soft content. as such, i very prudently usually only read the "celebrity gossip" articles at the bottom of the page (every girl has to have her guilty pleasures).

then i saw the link, "trying mind over cancer." my curiosity sufficiently piqued, i gave the write-up a quick read, then read it again to make sure that i didn't misunderstand it. oh yes...it's another one of those nbc news/msn/newsweek features about how if you just put your mind to it and have a good attitude, you too can beat cancer!!!

this "mind-over-tumor" attitude is discouraging when it's regurgitated by some average-joe acquantance who's never dealt with cancer--but for a major american news organization to be perpetuating the myth that 'if you just have a positive attitude, YOU CAN BEAT CANCER,' is downright irresponsible. what's even worse is that the article in question is from a popular psychology journal.

positive attitudes and humor are both important coping skills, and coping with stress is an important part of dealing with cancer. but the article, and so many others like it, fails to mention that you need to fall into one of two categories in the united states to beat this disease: most survivors are either upper-to-higher-middle class, or they fall into the other category, which is "damn lucky". it's no secret that the wealthy have better access to a wide range of many healthcare services in this country. when the media publishes work like "mind over cancer," the facts become obscured in the perpetuated attitude that everyone is ultimately responsible for his own health. the fact that a fat wad of cash can buy a person better-than-average healthcare is hidden by the sentiment that if someone just tries their hardest and has a positive attitude, they'll be triumphant over cancer.

hubby and i are part of the latter group: my job as a Fed has afforded us many opportunities that the average american cancer patient does not have. when we were stuck in a part of the country where the necessary treatment was not locally available, my government agency transferred us to a new base close to several great hospitals. all united states federal employees have the ability to acculmulate sick leave year after year, a perk which proved invaluable when hubby was required to have a caregiver with him at all times during the transplant. most private-sector employees simply don't have 2.5 months of paid sick leave sitting around in case of an emergency. the health insurance that the federal government provides is also more comprehensive than what is afforded to most other employees--hubby and i met too many people at johns hopkins who were struggling to have medically-necessary treatment paid for. while other insurance plans deem certain bone marrow transplant procedures "experimental," hubby and i were able to have the security of knowing that anything deemed medically necessary would be covered. we've had A LARGE amount of copays, but the total amount that we are responsible for paying is still a VERY small portion of the overall hospital bill.

the myth that positive thinking can have a significant affect on cancer needs to be stopped. the real heroes in this journey are not those who walk around saying, "cancer is the best thing that ever happened to me," but the men and women who are going to cut-rate rural county hospitals for their treatment because their insurance won't cover another facility. those who try to keep on working their blue collar jobs throughout treatment because they can't afford to take time off are of far greater mettle than those who daze along through treatment with a beatific smile on their face.

shame on msn for publishing another article that insinuates that one's attitude determines the outcome of their cancer therapy. this fictitious idea has received far too much press already.

the soft spot

2005-12-07T00:36:00.000-05:00

just when i thought i was wizened and hardened and impervious to all shocks, comes a phone call that just about brought me to my knees.

12:15 am...hubby is lying peacefully in bed, oblivious to the world, and i'm doing my usual late-night web surfing. at that late hour, the ringing of his cell phone was definitely enough to snap me out of complacency. i got up off of my duff and looked at the caller i.d...."unknown." ok, probably just a wrong number, a drunk dial, or both.

as soon as i set the phone back down it rang again. i opened the phone, fully ready to let the poor person on the other end HAVE IT. when the unthinkable words come out of the receiver...

"hello?"

"yes, this is a nurse from kaiser...is [hubby] there?"

"well, no, he's asleep, it IS a quarter past twelve here." (we have recently been getting calls from the billing department of kaiser hawaii, and i thought that maybe it was someone who wasn't aware of the time difference.)

"this is his wife," i continued, "can i help you?"

and then the nurse spoke those words that have plagued my nightmares ever since the bone marrow transplant. "no, i need to speak with mr. shaffer, it's an emergency situation."

all of my "how-dare-you-call-us-this-late-at-night" bravado disappeared like a popped balloon. deflated, i took the phone back to the bedroom and fought the old feelings of panic and dread.

"how bad is it?" i whined.

"ma'am, i really can't discuss this with you unless i have his permission...you are aware of HIPPA, aren't you?"

(at this point i became convinced that this nurse is the biggest bitch this side of the atlantic.) woke hubby up and told him "oh-my-god-it's-a-nurse-from-kaiser-and-she-says-it's-an-emergency-and-she-won't-tell-me-
what's-wrong-i-don't-know-why-we've-signed-so-many-fucking-release-forms--"
hubby snatched the phone, and after a whole lot of sleepy "yeahs," "nos," and "i don't knows," he snapped the phone shut and gave me the biggest eye roll EVER.

"my red cell counts were a little low, and the nurse called before she looked at my medical history. no worries, babe."

that's it?!? his red cell counts a little low?!? i know that many people would expect me to be outraged at the nurse who saw fit to call about a medical condition before she got the context...

...but THANK GOD that's all she had to call us about. THANK GOD it is not back. THANK GOD he is still OK.

seven things tag

2005-12-06T09:57:00.000-05:00

this post is not cancer-related per say but ties in with my earlier post about living each day to the fullest. thanks to hope for including me with this.

seven things to do before i die:

1. run and finish a marathon
2. learn how to cook fancy and impossibly rich desserts
3. travel outside of the united states
4. hike in denali national park, alaska
5. find a job/career that is challenging and fulfilling
6. renew vows with my hubby
7. move back to hawaii

seven things i cannot do:

1. make a "poker face"
2. deal with being lied to
3. eat red meat (i grew up on a dairy farm and had many cows as 4h projects/pets as a child)
4. sing, although i like to pretend that i can
5. see an animal in a shelter or rescue without wanting to adopt it
6. deal with overly excitable people
7. listen to those who tell me that i can't or shouldn't do something that i want to do

seven things that attract me to my husband:

1. his eyes and the emotion that they show
2. his strength
3. his willingness to support me on whatever crazy mission i'm on at the moment
4. his hands
5. his warm and strong bear-hugs
6. he's always honest with me, even when the honest answer is not the one that i may want to hear
7. through his journey with leukemia, he and i have learned a little about what is and is not important in life. and i feel lucky for that every single day.

seven things i say most often:

1. "no worries"
2. "i love you"
3. "that is not ok!!" (to my kids at work, when they are being slightly less than angelic)
4. "whatever we gotta do"
5. "ok...what now?"
6. "how ya doin'?"
7. "no worries" (this is spoken often enough in one day that it warrants having two places on the list.)

seven books or series i love:

1. "lullaby" by chuck palahniuk
2. "god bless you, dr. kevorkian" by kurt vonnegut
3. "diary" by chuck palahniuk
4. "america: the book" by the daily show writers
5. "the kid" by dan savage
6. "i want to grow hair, i want to grow up, i want to go to boise," by erma bombeck
7. "the prince of tides" by pat conroy

seven movies i would watch over and over again:

1. eternal sunshine of the spotless mind
2. kill bill #1
3. kill bill #2
4. silence of the lambs
5. dogma
6. chasing amy
7. clerks

seven bloggers to tag:
minerva, being made, and lori, who are all remarkable women. and anyone else who is inspired to write their own list after seeing mine, if there's anyone out there.

real cancer, real lives

2005-12-06T09:22:00.000-05:00

real cancer, real lives is a continuing effort of patients, caregivers, and medical bloggers to document what living with cancer is really like. the goal? to bust through the misconceptions about this bitch of a disease that are perpetuated by the media and those who've been lucky enough to have never had to deal with it.
this week's edition is up over at meaty, beaty, big and bouncy. please go and check it out.

sentimental...or maudlin?

2005-12-06T01:17:00.000-05:00

this past weekend, hubby and i attempted to get our place looking somewhat appropriate for the upcoming holidays. we spent the better part of our time decorating, baking, and listening to elvis' "if everyday was christmas" album.

we also purchased the first real xmas tree of our marriage. (we were still living on oahu for xmas '04. to make a long story short, there was a tree shortage in hawaii last year and we ended up with a white pine potted sapling from our local department store's floral section as our first tree--it was the only tree-resembling object that we could find.) to make up for last year, we wanted the full experience this year. so hubby and i found a tree farm back in the sticks near our town, and trudged out to the fields saturday morning with saw in hand. we found the perfect little tree and i now have experienced a brief spell of what it must be like to be a lumberjack.

during the drive to the farm, the two of us were sitting in the car making small talk, when i felt the usual sting in my throat and prickle in my eyes. i hid my emotional moment rather effectively as hubby didn't even notice. i was embarrassed--i've been extremely emotional since we've left baltimore, and now i was about to cry for no good reason?!? then it hit me. saturday morning was the first time in over three months that hubby and i have gone somewhere with the sole intention of being frivolous and having fun. this trip didn't involve a doctor's office or a stop at the pharmacy. our jaunt to the tree farm was just a short trip to buy something that we ultimately didn't need, but it was the first thing that we've done together in a long time that wasn't overshadowed by the transplant.

hubby's condition has improved remarkably since we left my parents' house, and we are trying to find our way back into the mundane day-to-day routine of the working stiff. but there are times when it feels almost as if we are starting our relationship all over again, which is an exciting and terrifying experience. as hubby's tastes in food, energy level, and general life perspective have all changed dramatically in recent months, sometimes it feels as if i have a whole new man in my life.

whatever happens, i hope that this new man and i hit it off as good as hubby and i did before the relapse.

ink and other crazy ideas

2005-12-03T00:18:00.000-05:00

be forewarned: i have something to say that some of you may not want to hear.

our experience with cancer has not been all bad.

now, i will never be one of those people who get up on their soapbox and say, "cancer is the best thing that every happened to me." those people make me rather cranky, and to be honest, if cancer is the best thing that ever happened to them they must have had a pretty shitty life pre-diagnosis! but there have been lessons learned throughout this whole experience that i'm not sure i would've gotten without being up-close-and-personal with our mortality. i've gained a new and better life perspective through cancer, and for that, i am thankful.

i plan to live my life with no regrets and to pack each day with as many new experiences as i can. in the past seven years, hubby and/or i have tandem-jumped out of an airplane at 13500 ft, hiked through a rain forest, helicoptered over an active volcano, hiked over a recently cooled lava lake (50 years--but geothermally speaking, recent), jumped off of a three-story tall rock into the ocean, swam with sea turtles, and moved 5000 miles away to hawaii for the first two years after college with no place to live and no acquaintances. i wouldn't call us thrill-seekers, and we are far from wealthy, but when the opportunity comes to do something, we rarely turn it down. you just never know if you'll get that opportunity again (or if you'll be around the next time the opportunity comes around). because of cancer, hubby and i have gained the ability to live each day to the fullest, and our lives have become more interesting for it.

one of my more recent "no regrets" moments (some would call them impetuous) happened in baltimore right after the bone marrow transplant. hubby still had his normal appetite and sweet tooth and had asked me to walk to a candy store a few blocks away to pick up a small box of chocolates. i took advantage of the walk to explore the area around our building (this was shortly after we moved to baltimore) and found a tattoo studio. hubby was (and still is) quite excited about getting his first tattoo, a phoenix rising out of the ash, on his right shoulder (we have to get the OK from our chief oncologist first, which may take a while). i decided to walk in and check the place out for hubby's sake. fast forward about forty-five minutes and i'm leaving with my second tattoo on the base of my neck. the text is "Na Pukaua" which translates to "The Fighters" in english, for hubby and i.

three months later, i've come up with one more crazy idea: i am going to run in the honolulu marathon, and finish it. before you kind souls defend this plan to me with your encouragement, please keep the following facts in mind: 1. i have never been a runner, much less an athlete, in my entire life. 2. i'm currently five-foot-four and 220 lbs. i'm smaller than this sounds, as even when i am working out and fit, i am five-foot-four and 170-175 lbs. but taking such good care of hubby since february has resulted in me neglecting myself a bit (ok, a lot). 3. the race is on oahu and i am in maryland.

i am writing this here, as a matter of public record, so that i can't back out. i'm not sure about whether i will aim for the december 2006 or 2007 marathon--it will depend on how my first few months of training go. i plan to run with the leukemia/lymphoma society's team in training and raise money to support leukemia research. i must also admit, while i'm laying everything on the line, that i have two other, more selfish goals; namely, that i'll start taking care of myself again and get healthier, and that hubby and i will get to go and visit our dear friends (and beaches) in hawaii.

let the craziness begin.

new beginnings

2005-11-30T09:08:00.000-05:00

yesterday, my first day back at work after the transplant, was comprised of many highs and a few (just a few) dark lows. i had worked myself into a lather at the beginning of the day--i was so worried about leaving hubby with no caregiver (and no one close by that he could call in an emergency) that i almost cried when it was time to leave. by the time i tried to finish some errands, the tears came for real and i was completely irrational. (note to self: bad customer service at the pharmacy is NOT a good reason to totally lose it.)

i got to work and, contrary to my preconceptions, the day got a lot better. i got a ton of hugs and my coworkers even left a gift basket in my office, complete with an anti-stress massage kit (which i will hit hubby up for when he's feeling a bit stronger.)

i got rained on (in a big way) when i left work--i was dripping wet just from walking across the parking lot. AND i had to administer my first subcutaneous injection of procrit to hubby last night. talk about nerve-racking, with a racing heart and barely breathing, i think i was more nervous than hubby! but I DID IT and didn't even hurt him (other than the pinch from the needle stick).

hubby has his first post-discharge checkup today, so hopefully things will continue to go well.

this might just work out.

the anti-stress gift from my coworkers

dropping temps and snow with a chance of isolation

2005-11-27T21:30:00.000-05:00

hubby and i just got back from our thanksgiving trip, which i hoped would be his triumphant return back to normal society. hubby would return to the scene, have a dashing good holiday, and everything would start falling into place in our post-transplant lives.

the return was slightly less than triumphant.

before i go further, hubby had an incredibly rough few days last monday, tuesday, and wednesday, and everyone expected that he would be a bit tired. i had even purchased a mini-thanksgiving meal for the two of us in case he didn't feel like traveling. in spite of his marrow aspirate (mon), chemo catheter removal (tues), and final lumbar puncture (wed), he handled the trip from baltimore to waldorf really well and got up raring to go to my parents' home. the actual holiday went okay, which i guess i should be thankful for.

from there, things went downhill fast. hubby's cold that was all but gone when we left baltimore returned with a vengence. he slept most of the rest of our visit, in and out, prompting great concern within my immediate family (suffice it to say that my remarks of "he does that sometimes, no worries," did not go over so well).

my father is not southern-born but is learning fast, and there are not many accomplishments that he prides himself more than his barbeque recipes. one of dad's most requested recipes is his barbequed potatoes, which hubby requested for dinner during his visit. given hubby's digestive tract record lately, i should have played the role of "barbeque-potato nazi"--"NO POTATOES FOR YOU!!!" hindsight is twenty-twenty: hubby valiantly tried to eat the meal that my father had slow-cooked all afternoon, then the meal made its second appearance of the evening about a half-hour later in the living room.

in the midst of all of this, my parents are concerned that i'm too hard on hubby--i'm starting to think that i did my job as caregiver too well. he is content to sleep on the couch and have me bring him his meds, drinks, etc. when i started to tell him to get these items for himself, the protests made on hubby's behalf were stridant. today, i drove the entire distance from my parent's place to north carolina (5.5 hours on I-95 on the busiest travel day of the year)--hubby slept. we got back, i unloaded the car on my own and carried all of our bags up the stairs to our second story apartment--hubby laid down. i attempted to unpack and straighten up a bit (did i mention that everything that we moved from baltimore last wednesday is still chucked in our living room and guest room?)--hubby slept. this pattern continues to this very minute (i had to escape for a few minutes to preserve my sanity).

there are times when i am extremely thankful for hubby's outpatient transplant program, and times when i don't think that it's such a hot idea. right now, the latter is true. i wish that he was either inpatient at a hospital or that we were back in baltimore. he isn't exhibiting any negative symptoms, but the extreme fatigue really isn't supposed to present this late in the game, and it's scared me shitless. i have to wake him and remind him to take his meds on schedule, and to try and eat. on top of all of the housework and unpacking. and i go back to work full-time on tuesday. i feel like i imagine a new mom must feel leaving her child to go back to work for the first time after birth.

as much as they tried, my family didn't help much. my attempts to remind hubby that he "needs to be more self-sufficient, starting on tuesday, i'm not going to be around for a large chunk of the day" were met with, "oh, but he doesn't feel good! you need to take care of him!" the seed of doubt was planted and now i worry about whether i am being a total bitch to my husband right when he is feeling poorly.

happy fucking holidays.

give thanks

2005-11-22T11:23:00.000-05:00

in light of the upcoming holiday and our upcoming discharge from the hopkins outpatient bone marrow transplant program, i would like to take a second to express thanks to the many people who have been reading this little corner of the web. just knowing that there are a lot of people out there in the 18-40 demographic who are going through this along with hubby and i has been such a powerful anchor for the two of us. as many of us know, there is not a large support community for young adult cancer patients and their families, so it was a truely awesome experience to find that there are a whole lot of us making up our own support group that spans several countries.

this is a bitch of a disease and sometimes things happen in life that just aren't fair. but i am so thankful for all of you and the support that you've shown.

some good news for a change

2005-11-22T11:18:00.000-05:00

we have a rough couple of days ahead of us but it ends well. hubby has a bone marrow aspirate yesterday, surgery to have his i.v. catheter removed today, and his final (hopefully, final for his whole life) lumbar puncture and spinal tap wednesday morning. his new immune system got a bit of a test when we both got a cold last week, but he is healing quite nicely on his own (not even an otc decongestant!!) it was a little bit nerve-racking but great to see his immune system react like it should without any outside help.

wednesday afternoon, WE ARE DISCHARGED and move back to waldorf. from here on out, we'll only have to go to johns hopkins once a month, and hubby of course has weekly check-ins with his local oncologist, but it will be an easy schedule compared to what we've been doing.

thursday morning, if hubby feels up to it, we are headed to north carolina for thanksgiving. (if not, i stocked up on our own mini-thanksgiving dinner with a turkey breast and some fixins, although this will be my first time roasting meat of any kind, so we'll see how it goes).

next week, i go back to work full-time. i'm looking forward to getting back to a regular routine but it is going to be a BIG mental adjustment to go back. i just have this idea that going from this intensely medical environment back to the banalities of everyday life will take a large mental leap. hopefully, i will not fall into the crevasse.

real cancer, real lives

2005-11-21T14:20:00.000-05:00

the seventh edition of real cancer, real lives is up over at nothing to say. please go and check it out, as most of the regulars are much better writers than i, and all have unique insights.

also, if you are interested in what you read and have something to say about the topic, please submit! you can submit blog posts here.

in case you haven't seen me in a while

2005-11-20T01:16:00.000-05:00

since this is the first major holiday that i will be spending with family since 2002, prepare yourself for some changes if you're one of those fringe relatives that i don't see that often.

1. the 45 pounds that i've gained since last february has given me a rather round and jolly look. yes, i'm aware that rapid weight gain is unhealthy--but hey, look at hubby, he's perfectly fine except for a random (to quote our doc) "genetic accident" that gave him leukemia. that treadmill's not looking so hot now that you know that your genes can randomly take you out--is it!?

what can i say, i eat when i'm stressed. suffice it to say, having the round and jolly look does not necessarily mean that one is actually round and jolly.

2. yes, hubby's doing better (other than the crippling fear that we both have about leaving baltimore and our medical team, rejection of the marrow, relapse, germs, graft-versus-host-disease, and shingles).

3. i drive fast and swear a lot more now than i used to. being up close and personal with my husband's mortality has given me somewhat of a nihilistic streak. i always DID want to be edgier.

inappropriate emotions...

2005-11-16T12:43:00.000-05:00

...are a sign of many psychological disorders.

gram's breast cancer is a stage 2A, a little further along than previously thought, and she will need chemotherapy. she was asking me a lot of questions about the side effects, and i think that she's more than a little scared. i'm pissed off about being a semi-expert on something that no one deserves to know anything about.

in the same conversation, she relayed to me that in the small town where i grew up and she still lives, the gossip chain got twisted and she got a couple phone calls asking if i was the one who had cancer. i laughed out loud and thought that it was extremely amusing that cancer has overshadowed our family's lives to the point that even the backwater-town gossip hounds were getting the details mixed up.

last night, hubby got extremely nauseated after dinner for the third day in a row. i had made stirfry and added a little bit of cayenne to the pre-bottled sauce to add some flavor. when he got sick, i broke down and told him, "i'm so sorry that i made you sick...my cooking always makes you sick anymore, and i don't know what to do. i'm so sorry about the cayenne." i proceeded to cry for a good 20 minutes. all over a damn pinch of spice.

they say you can never go home again

2005-11-12T18:47:00.000-05:00

the number one lady in my life, my gram, told me today that she was diagnosed with stage one breast cancer. she starts treatment on monday, with a lumpectomy and subsequent radiation.

i am taking some time off of writing to get my thoughts in order.

good night and take care,
amanda

normalcy? nah...

2005-11-10T13:44:00.000-05:00

so hubby and i had our discharge class this morning, where the nurses go over a booklet about what to expect and do when we get home from baltimore. it was a little less than uplifting. some excerpts, as we understood them:

1) don't hang out with, or in the general vicinity of, children under the age of twelve. they are little, indiscriminate, germ-laden w.m.d's.
2) don't use the same hand towel as anyone else in your family. use paper towels whenever possible. in fact, you should think about buying stock in a local paper company, and go ahead and use a roll of bounty when you get out of the shower each day. remember, anything that you use more than once harbors germs, so if they invent single-use toothbrushes, razors, deodorants, etc., we expect you to be first in line.
3) you should always use condoms during sex, even if you are monogamous and disease-free. in fact, you might want to use more than one. and go ahead and slap a biohazard sticker on your penis before you penetrate. never hurts to be too safe!
4) avoid sun exposure, as even a mild sunburn can trigger severe, explosive graft-versus-host-disease. don't go out during the day, wear at least spf 30, and forget about golfing or the beach. THAT'S RIGHT--THE SUN CAN KILL YOU!! AVOID THE SUN AT ALL COSTS!!
5) (related to #4) avoid garlic, wooden stakes to the heart, and crucifixes.
6) don't be downwind of a mexican alpaca on the 23rd of june.
7) wrap all movie seats, restaurant chairs, and mall benches in plastic wrap before being seated. if you have a vat of anti-bacterial gel with you, spray down the seat too. oh yeah, get in the habit of strapping a vat of that stuff on your back before you head out the door. what we want to emphasize is being careful.

is a regular life too much to ask for?

contradictions

2005-11-07T22:31:00.000-05:00

my experience with cancer has changed me in many ways, both predictable and unforeseen.

i am strong and bad-ass. i am more sure of myself than i have ever been before. if i can handle everything that's been thrown at me since february, what's to worry about the mundane, everyday life? that's right...NOTHING.

but...i doubt myself everyday when it comes to caring for my husband. whenever he gets nausea or a headache (which have been coming fast and furious lately), there is a voice coming from deep inside that suggests that it was my fault that he got sick; that i must have not taken care of him the right way.

i am not scared of dying. i've been faced with mortality each time we filled out hospital paperwork that asked hubby to designate next-of-kin, each time one of the people we met at the clinic got really sick and then stopped coming, and when we filled out our advanced directives in case there was a Terri Schiavo-like situation. i know that when the time comes, i will have done my best to pack as many experiences into the time that i had, and will go with no regrets.

but...i am terrified every day of losing my husband, who is the only person on this earth who knows me wholly and completely. i can't imagine that there is another man out there who is such a good compliment to me.

i am a modern woman. i have been the breadwinner for the duration of our marriage. it's been my job that supplied us with the health insurance, base transfer, and paid leave that have allowed us to get through the transplant with as few bumps as possible. hubby followed me and my job, instead of the other way around.

but...i still try my best to be a happy homemaker for him. i've been busy expanding my limited cooking skills, cooking new and delicious high-calorie, gourmet dinners each night in an attempt to tempt him to eat when his appetite is waning. homemade chicken soup? scones for breakfast? 16-oz. steak with a homemade marsala wine-mushroom sauce? anything you want, dear!

what a rollercoaster ride this has been.

extra, extra special

2005-11-07T22:10:00.000-05:00

tonight's question: what do you get as a christmas gift for the person who just beat cancer?

i want to get something very unique to show hubby just how much i love him and how glad i am that this is soon going to be behind us, but all of the stuff in the stores just seems material and...trite.

nothing seems special enough for him.

consequently, any suggestions would be greatly appreciated.

real cancer, real lives

2005-11-03T21:43:00.000-05:00

the couple behind cancer news watch and too sexy for my hair have started a blog carnival for cancer patients, caregivers, survivors, and medical bloggers. in case this is a learning experience for you like it was for me, a blog carnival is a topic-specific e-zine that's hosted by a different website each week.

'cancer. it's not just an astrological sign anymore.' will be hosting the december 18th carnival, but i urge you to check it out before it hits here. also, there's instructions for submitting to the blog carnival, if you're into that sort of thing.

link is below.

real cancer, real lives

no easy answers

2005-11-01T17:03:00.000-05:00

NOTE: hubby and i are respectful of all religious beliefs and appreciate all the prayers that have been sent our way. the following is my analysis of a spiritual conflict that we've experienced in the face of hubby's relapse.
--------------------------------------------

let me just begin by stating that neither of us are overtly religious. hubby and i currently do not belong to a church and have not attended regularly anytime in the past five years. hubby has deeper religious roots in his childhood than i do; his family upholds close contact (and almost perfect attendance) at the local united church of christ in the small town where we grew up. i, on the other hand, was baptized lutheran, briefly attended presbyterian during childhood, and took over sunday morning milking duty on the farm when i was 13 so that my mom and dad could go to (another presbyterian) church. after moving to north carolina, my family joined the local united methodist house of worship, in accordance with their apparent belief that the details aren't important as long as you're living to serve the Lord.

i have my own ideas and convictions about many of the subjects that are taught in sunday school, but have always been attempting to find a way to make my ideas fit someone else's system (much like the title character in j. blume's "are you there, god? it's me, margaret"). a brief flirtation with unitarianism in college yielded no benefits as i read about the religion but never found a church to attend. i like my hubby's denomination (the u.c.c. seems to be more progressive than most other protestant sects), but i still don't really feel like i get anything out of going to church when we attend as visitors. i DO fervently believe in treating others as you would like to be treated, no matter what race, class, ethnicity, or sexual preference; doing one's best to take care of our planet and leaving as small of a footprint as possible; and being honest (some people would say to a fault).

this struggle to qualify my belief system with those of my family and peers has become increasingly difficult during our experience with leukemia. the first time that i sincerely questioned the presence of a higher power was the evening that hubby was admitted to the pediatric intensive care unit at the pittsburgh children's hospital in 2001. it was 10 pm, and i was alone with him in his regular hospital room when the medical team made the decision to admit him. after he was stabilized (and i spent 30 long minutes in the icu waiting area, feeling very young, vulnerable, and alone) the team told me that i could come in to see him. the usual feeling of relief was quickly replaced by dread as i saw about a dozen tiny bodies, some still in incubators, covered with wires, paddles, drip lines, and swaddled in enough medical tape to hold it all together. hubby was the oldest patient on the floor by at least 14 years (he was 19 at the time). the other kids were too young to even really have a concept of what was happening to them. most of them drifted in and out of consciousness, but those who were awake screamed bloody murder. i will never forget the sound of those screams. at that point, i was thankful that at least hubby was old enough to understand what was happening to him, and ENRAGED that someone, anyone, could let this happen to so many little kids. 'what kind of higher being,' i thought, 'would let this happen to little ones who come into this world with a clean slate?'

and so my religious ambivalence was forever crystallized by that one evening. the pediatric intensive care unit was the closest place to hell that i ever hope to be.

the anger that was formed that evening at the children's hospital still resurfaces occasionally, most notably when i try to think what kind of bad energy hubby or i might have inadvertently put into the world to warrant having leukemia twice before the age of 25.

lately, i've noticed that when many people engage in small talk about a cancer patient, the big guy (or gal) upstairs finds his way into the conversation pretty frequently. the comments range from 'this is all part of god's plan for you two,' to 'cancer is evil at work.' i definitely appreciate the sentiment expressed by those comments, as well as everyone's thoughts and prayers. however anyone wishes to send good energy our way, i will take it, i am NOT picky.

the comments themselves have started to rub me the wrong way a little bit. some people seem to use the 'plan' comment to invalidate the anger and sadness that hubby and i feel sometimes when we're dealing with everything, as in, 'everything will work out, this is god's plan for you.' cancer does NOT make anyone saintly or mean that the afflicted are part of a higher calling. this is a horrible, terrible disease--stop telling me that i should be okay with it 'cause it's part of a plan!!

and while i definitely agree that if there is a devil, he would cause suffering similar to that of a nice strong round of chemotherapy, the 'cancer is evil' comment is loaded. most of the people in the bible who had evil fall on them did something to deserve it (jesus of course being the notable exception). and i'm sure not suggesting that hubby is christ-like. but if someone makes that comment, are they trying to insinuate that perhaps hubby and i are getting punished for our sins a bit earlier than most people do?

~untitled~

2005-10-30T16:46:00.000-05:00

after being pulled off of most of his chemotherapy drugs, hubby has ironically gotten sicker. at the beginning of the week, the doctors were congratulating him; patting him on the back and saying that he had turned the corner, the tough part was over, and he would start to feel better soon.

i came back from work last night to find him muddled and bruised, as if he had gone down to the pub, had a few too many and hit on a big guy's girlfriend.

turns out that the reality is far less glamorous: ever since saturday morning, he has had an intense headache that will not quit, and hasn't been keeping down anything other than white bread and water. the bruising was from vomitting so hard that the small blood vessles around his eyes burst; the muddled-ness, a side effect from the compazine and oxycodone he was downing like candy in an attempt to keep the side effects at bay.

we spent an entire beautiful indian summer day in the confines of the apartment. droughts of boredom were interrupted by intermittant puking. he vacillates between sleeping and being sick, and i vacillate between sporadic bursts of housecleaning and sitting on my fat ass, reading. the housecleaning is indicative of a larger syndrome: during the last two months, i have gotten much more domestic than i ever planned to be.

however, the fact remains that i feel like an inadequate partner. no amount of cooking, baking, and cleaning can make his nausea or headache go away. there is no magic recipe to make someone's hair grow back.

i just want to make him feel better.

lance armstrong's snl skit was not that funny.

2005-10-30T16:27:00.000-05:00

for more on the lance armstrong backlash, click here.

sidenote: in the interest of full disclosure, hubby and i are members of the political arm of the lance armstrong foundation, and wholly support his intentions of raising more money for cancer research and supportive programs for patients and caregivers. however, i have to wonder that his incredible story, in conjunction with the survivors showcased on shows like "today" and "oprah," contributes to creating a very rosy-pink concept for the american public about what cancer survivorship is like.

baby envy

2005-10-30T15:47:00.000-05:00

in the midst of the youth center's annual halloween event yesterday, i met my coworker's 6-week-old infant. she was tiny, delicate, and managed to look well-bred even though she was shoved into a pea pod costume with giant green pillow-like lumps going down the front. it suddenly seems like there are an awful lot of girls my age carrying either a basketball-sized protusion from their abdomens or a pink, perfectly-formed person in miniature in their arms.

i followed the obligatory gushing with an offer to baby-sit once we move back to waldorf for good. my coworker was polite but said, "between my parents, his parents, and my sister, i hardly get to see her as it is," then broke off the conversation and moved to a different section of the room.

surrounded in the room by 100+ happily shrieking kids and their parents, i felt so out-of-touch with what was playing out before me that it was like watching a movie. moms were adjusting the finishing touches before the costume parade, dads were busy wrapping up junior with toilet paper for the mummy wrap relay, and all around me were people whose heaviest concern for the afternoon was how much candy and prizes they'd acculmulate before it was time to leave. i don't know if i will ever get to spend an afternoon fussing over the minutiae of costume details and not getting the yucky candy in my bag. even if we decide to take the chance and adopt a kid in an attempt to become the normal young couple, i get the feeling that we will both be looking over our shoulders for the rest of our lives, waiting for the worst to happen. i would love to have the feeling of carefree fun again, for the only concerns to be trivial ones. maybe i thought that baby-sitting the little green cherub would lend me some of the joy that i saw on the families' faces yesterday afternoon, if only for a few hours. maybe that's why my coworker reacted the way that she did.

is my desparation for a normal family life that transparent?

it was all worth it

2005-10-24T11:03:00.000-04:00

got the results of hubby's chimerism test today.

he is now 100% donor marrow.

woo-hoo!!

final chapter

2005-10-23T17:46:00.000-04:00

or rather, the final sub-chapter of my recent adventures at work.

i was at work on saturday, and my supervisor unexpectedly stops by. which is okay, there was a fair amount of activity going on in the building, and there were no upset kids or parents, which is a successful day in my book.

the following is pretty much a literal transcript of our conversation:

"hey! how are you doing? how's [hubby]?"

"i'm doing okay, [hubby] feels okay, but we are both on edge a little bit."

"oh, really, why is that?"

"he's getting the first stages of graft-vs-host-disease."

"graft-vs-host-disease? what's that?"

"it's sort of a good thing and a bad thing--his new marrow is attacking his body--"

"--wait, isn't that like, 'i invited you to this party, what are you doing, man?'"

"--well, yeah," i continued, "but it's a good thing 'cause as long as it's just minor, it just means that his new marrow is trying to set up its own immune system."

"it's just minor right now?" (supervisor is getting visibly more and more uncomfortable with the conversation, and it's now taken the tone of small talk rather than interest or concern)

"yeah, well, he has a rash all over his face and neck, so that bugs him a bit, he doesn't like to go out in public, but i don't think it's that noticable and i'm glad that he doesn't have a more severe case..."

(super is no longer making eye contact with me)

"oh, what happens with a severe case of this?"

"well, it could attack his liver or his gut; if it gets really severe, it can be fatal."

(super's eyes literally bug out.)

"WELL...we have quite a few kids in the building tonight, don't we? it sure is getting cold outside!"

with that, he turned around and walked double-time to his office and shut the door.

the humor of the situation far outweighed the old feelings of anger that my place of employment was misunderstanding or uncaring, so i guess i've overcome the negativity on my end of the deal.

i just hope that my super gets to remain this ignorant about cancer treatment for the rest of his life, and doesn't have to go through what we've been through. i don't know if he could take it.

score one for me. :)

da hala'i hope da 'ino

2005-10-19T14:23:00.000-04:00

2 days of reflection has allowed me to clearly see how dark this experience has become for the two of us.

things are looking up though. after going to the office's employee relations team, i was able to win the battle over my paid leave. after several hours of e-mailing and phoning, my supervisor admitted that he had lost the paperwork that i had submitted for the family medical leave act and that his supervisor had used it as a loophole to bring up the old rule.

all is clear now, i can exhaust my leave, apply to have some donated if i need it, and it was a learning experience for my supervisors. still no apology for treating me differently than my pregnant coworker, but i'll take the victory that i got, thanks. i guess the miracle of birth is a lot easier for people to understand than a bone marrow transplant.

i was very tempted to say over the phone, "i was rii-iight, you were wroo-oong, ninny-ninny-boo-boo" but of course restrained myself as i am a grown-up, or am at least pretending to be one.

hubby's got the beginning signs of graft vs host disease. this is good and bad news all rolled up into one. too much of it can make the graft fail, or even kill him. however, a little bit of it means that the new marrow is in his bones, growing, and trying to set up a new immune system. it has us both teetering on edge between joy that we have an outwardly visible sign that the transplant is working, and fear that the gvhd could get out of hand and become a life-threatening complication in the matter of an hour or two. for now i'll take the "woo-hoo-the-new-marrow-is-working" viewpoint.

p.s. post title is "the calm after the storm" in hawaiian. thanks to hope and lisa for showing support.

crash

2005-10-17T13:21:00.000-04:00

i am so fucking sick of my life right now.

the word "quitting" isn't right, but it's the first word that comes to mind.

hubby's counts are steadily dropping. he is now just hovering above neutropenia. what was supposed to be a brief morning checkup at the clinic has turned into an all-day chill-out with the nurses as he gets two units of whole blood transfused.

the 2-week respite of actually being able to go out in public without a mask is over. i have a week of the clinic and apartment (and sterilizing EVERYTHING) to look forward to.

my supervisors at work have continued in their fine tradition of being the most insensitive boors this side of the atlantic.

balancing work and eric's care was relatively easy in hawaii. it was tough not having family there, but the people i worked for stepped in nicely. i was never expecting it to be as easy at my new post. after all, i did basically use a government transfer to a new base to move my family closer to better medical care.

i don't feel guilty about this and i never will. any one of my colleagues would have done exactly the same thing if they were living in an area where a necessary treatment was not available (there are no bone marrow transplant centers in hawaii).
but i can see how it might ruffle the feathers of a supervisor a bit ('she's not really committed to this base,' 'she doesn't really want to be here,' etc.)

but my supers at my new post are making the transplant into so much more of nightmare than it needs to be.

when i first told my direct super about the transplant schedule, he had the nerve to say, "this doesn't fit in with my staffing plan...can you see if JH will reschedule?"

after i told him that i would be able to work 1 day a week after the transplant (hubby is required by his protocol to have a 24-hour caregiver with him), his response was, "can't you give anything more?"

but what happened on friday really took the cake.

i am close to using up the last of my paid leave. after completely exhausting my own leave (both sick and vacation), i am fortunate enough to have a program with my employer where i can sign up for leave donations from friends and coworkers all over the world.

hubby and i were really counting on this--we have no other income, and we still have our regular monthly expenses, plus copays, plus our health insurance premium (through my work, but i have to pay my share out-of-pocket if i am not earning enough money to cover the cost of my share).

supers call me on friday with some ancient rule about having to keep 80 hours of sick leave that doesn't even apply in this case. tell me that they will not accept my current timesheet, and that they were not aware of any policy that states otherwise.

sent them my paperwork from personnel to no avail. now i am not even sure if i am getting paid for this pay period, or if i will be able to apply for a donation once mine is exhausted.

to top it all off, i found out that a coworker of mine who just came off of sick leave for having a baby was able to apply for leave donation without issue.

why do they have to fuck with me so much? this is fucking stressful enough as it is without worrying about work shit.

gestation

2005-10-13T00:06:00.000-04:00

spent more "girl time" talking with one of my friends from college this evening.

most of it was spent discussing a mutual friend's pregnancy, the first one of our group. the irony is supreme--the pregnancy was not planned and our friend was one of those rock-star types who managed to frequent most of the bars in the city and still keep her life together. the initial shock has subsided and she is happily anticipating the birth of her baby girl.

the pregnancy is doubly interesting for my phone buddy and i as it is our first vicarious experience of child-bearing. this was not our first exposure to pregnancy in our peer group (we both went to rural, mountain-town high schools--there were girls getting pregnant when we were in seventh grade); but it seems so much more real this time. we have come of the age where one is expected to settle down, start a family, and begin working on gray hair, expanding waistlines, and a mid-life crisis. being pregnant has lost the "after-school special" stigma and has become something that we are supposed to crave. phone buddy and i still aren't so sure that we want to buy into the whole "home-on-a-treelined-street-with-picket-fence-and-dog-and-2.5-kids" modern american life, but as p.b. so sagely put it, "we'll see how this one goes, and then we'll decide if we want kids."

maybe.

the whole conversation made me think of the phone call we got from the fertility clinic back in july. my amazing husband, in spite of the stresses of moving into our new apartment, putting up with me as i started my new job, etc. etc. decided to be a glutton for punishment and subjected himself to an 8 am spooge-in-a-cup session on the other side of dc. all for the off chance that we might decide we want to conceive someday after the transplant.

our previous oncologists had told us that the chance of us making biological babies was slim. at johns hopkins' urging, we had decided to get tested anyway before he started to take the pre-meds for the transplant, "just in case" there were viable cells that we could save for later. we took this a bit too far and created a whole plan for our family-to-be, hinging to the false hope that the chemo hadn't already rendered him sterile. before the results even came back, we had picked out a sperm bank, discussed how many years it would take for us to be ready to start a family (ie, how many years it would take to pay off the medical bills from the transplant), and even talked about possible names for the little bugger.

one 2-minute phone call was all it took to bring us back down to earth.

the good news = hubby wasn't completely sterile.

the bad news = 80% of cells were immobile, 50% had deformed heads, which translates to the chance of his sperm making a healthy baby was a long shot. the fertility clinic recommended that the expense of banking his cells would not be a good investment. and there was a 99% chance that hubby would be completely sterile after the transplant.

the news shook us both up hard.

several months' distance has allowed some contemplation though. hubby and i had never planned on kids. we were going to be the wild and crazy type that moved to a new interesting area every couple of years without regard to which school district we lived in. we were also planning on having disposable income and travelling a lot, neither of which comes easy when you're a parent.

why are we mourning the loss of the child that we never had? is this yearning for a family an expectation that is programmed into us by society? is this just the next cool thing to do after you get married? worse yet, is this an extreme case of keeping up with the joneses?

25 and i already know that i will never experience the visceral production of a new life inside of my body. but 25, and we still have a whole world of choices in front of us.

why do i want so badly to be called "mommy"?

mind fuck

2005-10-09T22:26:00.000-04:00

the wedding was beautiful. it did not mess with tradition and went smoothly as a result. the bone marrow transplant has definitely messed with mine and hubby's heads though. what should have been a loving and emotional experience was instead full of anxiety. the dread settled in before we left baltimore county. hubby looks at me and says, "i feel like a baby bird leaving the nest for the first time." his vocalization echoed what had been going through my head all morning. getting to see friends and family AND participate in my brother-in-law's wedding was an amazing priviledge, but leaving the safety net of johns hopkins and our medical team was terrifying.

things got off to a slow enough start. eating dinner at a (slightly crowded) restaurant was only enough of a threat to raise the Hubby Threat Level from green to yellow. until a family with three kids under the age of 5 sat next to us. for the rest of our meal, the whereabouts and proximity of the rugrats was my chief focus. had any of them received a live vaccine or booster lately? do any of them attend that cesspool of germs otherwise known as preschool? have they had chickenpox? etc., etc., etc.

saturday, hubby woke up at 6:30 to go have coffee with his dad. he woke me up to let me know where he was going, and added that his mom was going to be cooking breakfast. instead of murmuring, "oh, that's nice," or "have a good time," my parting words were, "make sure that she knows that you can't have soft-cooked eggs or french toast."

score two for paranoia.

the actual wedding resulted in enough anxiety for three new stomach ulcers. we were seated at the front of the church, kind of away from people...until everyone and their brother came and wanted to hug or shake hands with hubby. (this was the day after one of our docs told us to "permanently break ourselves from the habit of shaking hands--it's how most germs are transmitted.") the affection was genuine and appreciated, but how many of them washed their hands before grabbing hubby's? the reception hall was crowded and we nervously listened for the telltale signs of airbourne illness--coughing and sneezing. hubby and i were both hungry--by now it was going on 4:30 and nothing to eat since a small breakfast--but the food was set out buffet-style, another no-no. i grabbed him a plate of cookies right as they came out of the kitchen (before people could stand around and breathe on them), got a fresh cup of punch, and hoped for the best. at dinnertime, the reception staff were really cool about letting me go back into the kitchen and getting food right out of the giant fridge instead of grabbing stuff off of the buffet for hubby. but my heart sank when i got into the fridge and the rest of the food was already on the buffet trays. how long had it set out while they were artfully arranging it on the tray? did the staff wash their hands before and after handling the meat each time? did the sandwich stuff originate from a deli where it sat out in a big display case for days and days? 'man cannot live on cookies alone,' i told myself and made hubby a sandwich. i got back to the table and gave hubby his sandwich when we realized that i had left our hand sanitizer in my other purse.

i sat and tried to eat while hubby ate his sandwich of meat-of-questionable-origin with his hands after making contact with almost every person in the tight confines of the reception hall. 'this is it,' i thought, 'he is going to catch a bug that is going to interfere with his graft and make him really sick. and it is my fault for not remembering the hand sanitizer or making sure that he had clean food to eat.' i managed a few bites of the food on my plate and could eat no more.

we have been dealing with acute lymphocytic leukemia for seven years now. this is the first time that the cancer has ever affected our thought processes so severely. is this something that will subside with time, or are we doomed to an existence where every public encounter is an invitation for new microbes and viruses? it is easy to make sure that the hard surfaces in our apartment are cleaned with clorox, that our linens are washed in hot water, and that all of our food is washed, sanitized, and/or pre-packaged. however, the world outside of our apartment is a dirty and henceforth scary place.

score three for paranoia.

wedding bells

2005-10-06T23:45:00.000-04:00

got leave from the clinic to go to hubby's brother's wedding. we leave baltimore tomorrow, for 2 whole days.

selfishly, i am more excited about leaving eric with family members and going out with some of my friends from high school. i'm a witch, but it's the first real "girl's night out" that i've had since i moved back to the mainland.

the doc only approved us to go on saturday (drive, go to wedding, drive back). our nurse practitioner is letting us go friday through sunday. i'm working on paying her off with chocolate chip cookies. happy baking!

nosedive

2005-10-04T22:40:00.000-04:00

we got out for the first time since we moved to baltimore today! hubby's blood cell counts are bouncing back after bottoming out at the beginning of last week. we got the nurse practitioner's ok to go to the family wedding on saturday, and we might even be able to stay the night on saturday. went to the mall to buy outfits to wear to the wedding. so much good news in one day inevitably sets one up for failure.

it was at the mall that i realized the psychological toll that this whole process has had on me. hubby was tired out by the experience but ultimately had a productive trip--he got one sharp-looking suit at the first store we went to.

i on the other had had the rather humiliating experience of going to 4 different department stores and not finding even one dress that would even remotely fit me. looking in the mirror under the dressing room lights was a shocking experience. since his leukemia came back, i've put on 30 pounds, found 4 or 5 new grey hairs, and have aged a lot more than i should have in 6 months' time. i have stretch marks in places that only pregnant ladies should get them. i am no longer attractive, nor do i look like a healthy 25-year-old should.

i believe that making substantial investment in one's looks is vanity and therefore a waste of time. however, there is a difference between vanity and taking care of one's self. i am growing weary of my role in this whole mess. i am sick and tired of not being able to be lazy and whiny when i'm sick; of not having the time to establish any kind of social connections in our new town; of having to ask to spend the money that I earned on random stuff for myself--i understand the need to keep non-necessary spending to a minimum but i work hard enough to keep this ship afloat that if i decide i want a new purse or something i shouldn't catch shit for it. i'm tired of the stupid medical bills, of being viewed as the "charity-case-of-the-month" in somerset, and most of all, of not having a normal life. the closest thing i have to a friend in the baltimore-washington corridor are the damn clinic nurses.

i just want to be able to have my own life that is not affected by cancer. i want to be able to take care of me again. this has gone on long enough.

going, going, gone

2005-09-28T22:51:00.000-04:00

hubby is trudging on through the daily routine of 1) wake up, 2) eat breakfast, 3) wrap chest in plastic and shower, 4) report to clinic, 5) sit and be a good boy while the nurses fill up a whole i.v. rack of drug drips that aren't going to make him healthier or feel better for the short term. he is now neutropenic and has virtually no immune system left. it is not safe for him to leave the apartment, or the sterile prison of the clinic, without the label of a surgical mask plastered across his face. this is part of the game, and we have several weeks of "every speck of dust is a threat", and not being able to walk through public spaces without perfect strangers knowing what our story is, to look forward to.
this is ultimately for the best, although we will not know if the transplant worked until day 30. we no longer live by the julian calendar but by the calendar that the nurses prepared for us. there are no saturdays or wednesdays or thursdays, but time is measured in days before and after transplant. hence 20 more days until we find out if this was all worth it.
questioning why this has happened to us again. we are stereotypical "good people." hubby was an eagle scout for christ's sake. karma is not working for us. why try to follow the rules and be a good person when shit keeps falling on you anyway? trying to quell the wave of lawlessness that is brewing in my head...

follicle envy

2005-09-23T22:15:00.000-04:00

back to back days of cytoxan. the clinic was hopping today. there were so many patients that i started to feel funny walking around with my full head of hair.
i go back to work tomorrow to a one-day per week schedule. it's gonna be a shit storm.

post-transplant

2005-09-21T15:42:00.000-04:00

The transplant went okay yesterday. We were at the clinic all day and
eric was attached to an iv pump all day, so mobility was limited. the
whole event was very anti-climatic, the bag of marrow was smaller than
expected and was administered just like a blood unit. the most
stressful part of the day for eric and i was trying to pick out a gift
for our donor (hubby's brother). we both put a lot of thought into it
but there just isnt a gift out there that screams "thanks for the
organ donation." not exactly a hallmark card for that one. (we
settled on a manly silver chain--apparently, jewelry is an all-purpose
gift for men as well as women.)
i'm going back to work one day a week starting this saturday. hubby's
doing ok, his hair hasn't fallen out yet and we look and act a lot
more normal than a lot of the other patients at the clinic. I guess
this means we are either weird or resilient. the clinic is a
depressing place--every one else there is all sad and quiet and stuff
(except for the nurses, who are mostly our age and seem to appreciate
that we don't act like hubby's on his deathbed.) sometimes i just feel
like telling people to get over it, stop feeling sorry for themselves,
and to make the best of the time that they have there. there's an old
guy who comes in every day and tells everyone within shouting distance
that if he dies from this, he is okay with that, he's had a full life,
blah, blah, blah...hubby and i both want to beat the crap out of that
guy. (my bitchy streak has apparently not subsided as a result of
this experience.) :)

charm city

2005-09-18T15:45:00.000-04:00

no pictures yet. (at least that i can upload to a public computer.)

we are staying in the renovated church home hospital, where edgar allan poe passed away. we have not experienced a haunting yet, but sometimes the toilets make a weird noise. it's on several lists of haunted places in baltimore though.

our new neighborhood is gritty and diverse. very latina right where we are at, with the tourist area of fells point directly to our south, and little italy to our south east. there's also a (still-operating!) adult movie theatre with a double feature every night. it may be a weird thing to notice but those theatres are few and far between in these days of moral decency, v-chips, and family programming. most are simply content to sit at home and watch cadavers being dissected or people eating pureed rats on television.

this isn't going to be so bad.

on your mark, get set, go!!!!!!!!!!

2005-09-15T08:34:00.000-04:00

hubby and i arrived in baltimore monday afternoon. our temporary quarters are nicer than our own apartment, with a few overlooking downtown baltimore and huge, sunny windows. surgery was on tuesday, to get another hickman catheter (his medicine port), and chemo started yesterday. things are going well and i will hopefully post some pictures of us and our new area soon.

11th hour reprieve

2005-09-11T23:07:00.000-04:00

september 7th was an eventful day at johns hopkins, filled with legal paperwork and hygiene classes (yes, we had to learn how to clean hubby's surgery sites and body to prevent incidental infections). at the end of the day, we found out that the transplant had been pushed back 4 days.

chose not to go back to work because 1) all of the junk paperwork for the family medical leave act had already been submitted, and it might take an act of congress to change it now; 2) my gram was in the hospital this week for her second knee replacement; and 3) my coworkers don't seem to know the difference between a bone marrow transplant and a cold. so we drove to pa to visit with family one last time.

it was in pennsylvania that i realized that i am the most vicious green-eyed monster in the whole world. i got tired of assisting my gram at the hospital because i am quite tired of being around sick people in hospitals. i got mad about the article in our hometown newspaper (see here) because hubby put a special thank-you in for his brother, the donor, while i only got mentioned as the wife. got pissy at a family dinner because hubby and brother were toasted by the family and not me. the transplant has not even started yet and i have already been transformed into a rather putrid example of a human being.

tried to explain to hubby why i felt the way i did, but the reasons seemed even more petty and ridiculous as they became audible. the donor (hubby's brother) has an important role but he is only there for three days and then gets to resume life as normal. so far, here's my tally (not like i'm trying to keep score or anything):
1) moved 5000 miles from friends and a job and area that i loved to a new job and area that are less than stellar so hubby could be treated at johns hopkins;
2) fought with new boss and turned in stacks of paperwork so that i can take all of my leave (6 weeks saved up) to take care of hubby;
3) keeping the job that is less than stellar so that i can provide money and health insurance to hubby;
4) balancing work and caregiving for hubby for at least 2 months (this was the only way that my new boss would agree to give me the time off without comment).

i'm not looking for a medal or anything, but i wish that someone would ask how i'm doing instead of how hubby is doing. also, i wish that i had people to go out with here in our new town and talk about things other than the cancer treatment.

i am the most jealous person alive.

katrina

2005-09-08T09:02:00.000-04:00

i have held off on making a comment about the louisiana disaster because hubby and i have been limiting our exposure. what happened is inexcusable and i am not trying to diminish that; however, emotions are running high in our household as the transplant date approaches and looking at stock news images of dead children and looters doesn't do much to lift our spirits (which are in need of one lately).

i finally found something that enraged me enough to break my silence. bush et. al. have demonstrated to me countless times that they do not care about the ill, the poor, and countless other subgroups of our society (see here)--but now that lack of empathy is finding its way onto newsreels and magazine articles. below is such an example--courtesy of the magazine, The Nation.

Barbara Bush: It's Good Enough for the Poor

John Nichols Tue Sep 6, 1:08 PM ET

Finally, we have discovered the roots of George W. Bush's "compassionate conservatism."

On the heels of the president's "What, me worry?" response to the death, destruction and dislocation that followed upon Hurricane Katrina comes the news of his mother's Labor Day visit with hurricane evacuees at the Astrodome in Houston.

Commenting on the facilities that have been set up for the evacuees -- cots crammed side-by-side in a huge stadium where the lights never go out and the sound of sobbing children never completely ceases -- former First Lady Barbara Bush concluded that the poor people of New Orleans had lucked out.

"Everyone is so overwhelmed by the hospitality. And so many of the people in the arena here, you know, were underprivileged anyway, so this, this is working very well for them," Mrs. Bush told American Public Media's "Marketplace" program, before returning to her multi-million dollar Houston home.

On the tape of the interview, Mrs. Bush chuckles audibly as she observes just how great things are going for families that are separated from loved ones, people who have been forced to abandon their homes and the only community where they have ever lived, and parents who are explaining to children that their pets, their toys and in some cases their friends may be lost forever. Perhaps the former first lady was amusing herself with the notion that evacuees without bread could eat cake.

At the very least, she was expressing a measure of empathy commensurate with that evidenced by her son during his fly-ins for disaster-zone photo opportunities.

On Friday, when even Republican lawmakers were giving the federal government an "F" for its response to the crisis,
President Bush heaped praise on embattled
Federal Emergency Management Agency chief Michael Brown. As thousands of victims of the hurricane continued to plead for food, water, shelter, medical care and a way out of the nightmare to which federal neglect had consigned them, Brown cheerily announced that "people are getting the help they need."

Barbara Bush's son put his arm around the addled FEMA functionary and declared, "Brownie, you're doing a heck of a job."

Like mother, like son.

Even when a hurricane hits, the apple does not fall far from the tree.

the o. c.

2005-09-06T23:12:00.000-04:00

no posts for a while due to the computer crashing. we had to completely reformat. fortunately, a lot of our pics were backed up.

we leave for baltimore tomorrow. we're not ready to go at all. we have been putting off all of the prep work that goes into an operation of this magnitude. the procrastination is a side effect of the increasing anxiety that we both feel as september 16 grows closer.

we were in ocean city for the weekend as one final hurrah before we head to our city of dreams. although we weren't sure how we would feel about a beach that was so developed and built-up, we had an amazing time. hubby and i spent tons of time on the beach and in the water, reconnecting ourselves to the rhythm of life outside of work and traffic and all of the things that just don't matter at the end of the day. in the evenings, we danced down the boardwalk to the buskers pouring their souls through the small holes in a harmonica. we shared a funnel cake and got our picture taken as a couple from the 1920s. it was a perfect send-off to our lives pre-transplant.

tomorrow we dive into the deep end and hopefully we'll emerge cleansed of leukemia.

here's to many more romantic weekends on the beach.

straight gangsta, 1920s style

excitement and flashing lights

2005-09-01T22:56:00.000-04:00

i witnessed my very first high-speed police chase this past saturday while driving home from work. just driving down route five, minding my own business, when all of the sudden a truck with two atvs on back comes blazing out of the traffic coming the opposite direction. one of the atvs was hanging off of the bed, onto the ground, and was ON FIRE. as in three foot flames shooting off of the back of the atv.

if this wasn't enough, five cop cars come blazing after it.

saw it on the news later that night and it was an armed car-jacking in hughesville (about five miles south of waldorf). brothas jacked dat hoopte and wuz rollin' back to da d.c.

life is exciting in the dc metro area. but it is exciting for all of the wrong reasons.

(if you don't believe me click here.)

a mixed week

2005-08-26T22:19:00.000-04:00

thug's passing was followed by two intense days of procedures and prepwork at johns hopkins for the transplant. not the most fun way to spend one's time. but with each day we get closer to the last chance we have to beat his leukemia. the end of our journey. we've travelled over 5k miles, left good friends, and started a new life to be able to be here, with these doctors at this hospital. and i cannot wait.

whatever happens, i think that hubby and i are a lot more prepared than most adults facing this diagnosis. we have about 3.5 years of experience with the disease and its side effects under our belts, and i really don't think that there's a whole lot that we have not encountered during our battle.

our social worker at the hospital referred us to the ulman cancer fund for young adults, the only support group specifically for the 18-35 year old set. (this was such a relief to find--apparently, everyone else thinks that 20-somethings are too busy being young and fabulous to need a support group. yeah, right!) there's a link over in my "links" section--please check it out.

in all--this was a trying week, but hubby and i are in fighting form.

as gwen stefani would say,
"a few times i've been around that track,
and it's not gonna go down like that."

bring it on!

lucky thug vaughan shaffer--8/1/04 - 8/24/05

2005-08-23T14:05:00.000-04:00

due to feline infectious peritonitis, thug will be put to sleep tomorrow morning. he was the best cat ever...rest in peace little buddy.

straight thuggin'

2005-08-22T21:40:00.000-04:00

thug, our hawaiian kitty, is currently in the hospital for suspected liver problems. (no, he is not an alcoholic). we took him in this morning 'cause he had lost some weight and was lethargic, and now he is hooked up to a machine that goes ping and has a mini-version of one of those plastic lampshade collars on.

please keep the poor little guy in your thoughts.

huaka'i Baltimore ho'omaka

2005-08-22T20:11:00.000-04:00

just worked my last full week of work until around thanksgiving-ish. and boy was it a doozy. hubby and i put in tons of time facilitating a missoula children's theatre camp residency, where two people about our age show up with a pick-up truck full of sets, makeup, and costumes, and we have a week to put on a full-length musical play with a cast of 30-60 kids. if this sounds insane, it was! but it was also funny and random and (cliche alert) rewarding. we had about 35 kids of all ages to wrangle, which is not only the most effective method of birth control EVER but is also a good test for how the people you love handle stress...like when you tell them that you're expected to be two places at once during the day on friday, can they come in and watch the theatre camp for you? (there was another base special event on friday, and "special events" are unfortunately the header of my job description.) hubby rose to occasion and even helped out with the 5-year-old actors who played our "barnyard critters," then proceeded to go home and prepare a delicious multi-course meal for the two of us plus phillip and amanda, the missoula staffers (who were awesome in their own right). the whole experience was draining and funny and awesome but also made us a little melancholy when we realized how awesome it was to have people your own age to sit around and talk to. the only drawback of moving around so much is that we haven't had time to forge any real relationships other than with the people i work with, most of whom have children my age. at any rate, the theatre camp was a "bonding experience" on many, many levels.

this week, we report to the castle in the sky that is known as the sydney kimmel cancer center on johns hopkins baltimore campus. hubby and donor get their final rounds of testing, and family and i go to nursing classes (although i think the classes will be a breeze--so far we seem a lot more seasoned at this than a lot of other adult patients that we've met). chalk up one for experience!!

move in date for our apartment in baltimore is 8 sept. before that date hits, i am trying to create a full-length cd of "fighting songs" for hubby. any suggestions are welcome. so far i've got "hollaback girl" by gwen stefani and "we will rock you/we are the champions" by queen.

the bright spots

2005-08-08T22:52:00.000-04:00

as i posted a picture of our new kitty without much explanation about 1.5 weeks ago, i will now explain.

thug came with us on our journey. $100 for one-way airfare, plus the cost of all of the paperwork certifying that he was not carrying some exotic tropical disease that would decimate the cat population on the mainland.

but, he was getting a little (ok, a LOT) chunky around the middle, and didn't like being left at home alone...so we adopted a second kitty from our local humane society. we actually knew where the humane society was before we knew where the local post office was, if this gives any insight into what kind of people we are (sappy).

here are pics of our boys...

hubby and thug

a kiss from makoa

all the cool kids are doing it

2005-08-08T22:47:00.000-04:00

join the virtual march on washington to stop global warming here.

i'm competing with wesley clark and john mccain for the top of the list! (well, not really, but if you sign up onto my page, i'll be on the list)