writings
T
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
I
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...
O
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
H
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
E
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...
O
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
I
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
W
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
T
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
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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
I
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
G
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...
T
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...
A
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 LeukemiaFebruary 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
T
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!
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
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 blogsglori 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 blogscary 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 blogshsien 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 livescancer
