Support this effort: Aid for Aidan

Have you heard this story? Five-year-old Aidan is going through treatment for leukemia. He also loves all things monster. To offset some of the costs of ongoing treatment, his family prints and sells his drawings on Etsy. What an amazing kid! Every blog and Facebook update shows him with a huge smile on his face as he endures so much. Learn about his story here and here. And check out his artwork here. 

Keeping up the good work!

On Friday, I took one bizarre trip to Kellogg Cancer Center. I left with just one tiny vein poke, NO nausea, and a 3-month stamp of approval. My blood work showed that everything is in (nearly) working order. My white blood cells are not quite as strong as they should be, but they're on their way back. And every sneezing, nose-picking two-year old I encounter helps the cause.

GOOOO REMISSION!

New Updates to Health Care Reform!

On September 23, new legislation brought better assurance of coverage to Americans including young adults-an overwhelmingly under/uninsured population. Kairol Rosenthal's Everything Changes blog covers the key details here.

Imerman's Angels Benefit

Fantastic organization + Amazing clothes + Lush urban setting =

Forget-Me-Not

At three and half months out of chemo, it's probably safe to say that the drugs have, for the most part, evacuated my body. My eyebrows are back, I've got serious energy and The Hair Tracker is in full swing. While the hideous side effects of six months of treatment will never be forgotten, hopping back into "real life" has displaced them from their usual position at the top of my list of things to obsess over. So I've occasionally been surprised by some of the minor but to-be-expected results:

Age spots Really?  Thanks a lot, chemotherapy. Time to bust out the exfoliator and start caring what Retinol is.

Peripheral Neuropathy The tiny shock that spontaneously occurs in my feet never gets old.

Heartburn Not even comparable to during treatment, but still happens occasionally.

Yes, that's correct. Three and a half months out of treatment!

Dance Power! Yeah!

After a long hiatus from self-centered posting, let's talk about me. Today I began my sixth season at Zephyr Dance. While the beginning of each consecutive year leaves me marveling that I am yet another year out of college, entering number six feels truly commemorative. For several months I've wondered how I would fare through a busy teaching and rehearsal schedule without vicious invaders messing with my energy level. Here's my opportunity to test that theory. In fact, I'm so eager to prove I'm right that I agreed to teach on Friday nights this year. I'll need that reminder as I trudge through inbound traffic this winter...

I can only hope that as I round the corner on season 7 I'll be up for this:

Another great article link

On one of my new go-to blogs (NOT the wedding kind), I discovered a link to an article by Vanity Fair contributor Christopher Hitchens that details his personal travels through cancer treatment. It contains a perfect balance of clarity and flourish that makes me keep going back to read it.

http://www.vanityfair.com/culture/features/2010/09/hitchens-201009

Progress!

I just have to make note of my Hair Tracker progress. What a difference a month makes. Although Cody has been retired for quite some time, her work is truly done.

New blogs to check out!

You think I'm funny and insightful. Check out this blog:

http://dicktersbedpan.wordpress.com/

And the one I found it through, also very compelling:

http://katiesblogw.blogspot.com/2010/06/surprises-responsibility-bliss.html#comment-form


Happy reading!!

Aftermath

I couldn't figure out why I was so exhausted on Monday. And Tuesday. And then I remembered an important reminder I received from Northshore Survivorship nurse Carol Martz: Even though the drugs have left my system, the lasting effects of chemo can potentially wreak havoc on my energy level from time to time.

So far, I do pretty well with daily activity: yoga, rehearsal, a 20th anniversary concert. I notice the fatigue at times when my days are spent staring at the computer.

And with that, I'm off to celebrate the good health with a trip to Phoenix and San Diego. Snorkeling, swimming, pool lounging and, regretfully, no computer. So long until next Wednesday....

Strength Training

A question for Customer Service everywhere:

How can it be deemed unusually high call volume if it's constantly the case? When is the off-season?

This is a valid question coming from a patient who has spent countless hours on hold with billing offices and call centers. After receiving my diagnosis and learning that I could not teach dance, I immediately looked into options for financial assistance. Six months of repeatedly providing my account numbers,  I've managed to navigate my way through the system, but there are a few things I've learned:

1. Many hospitals supply patients with personnel to assist with complicated bills and financial aid. Though part of the hospital, my treatment facility employed a separate advocate designated to their patients. If you have access to this resource, use it.

2. Keep a record of phone conversations. Include the date, person you spoke to, the nature of the call and answer you received.

3. While waiting for financial decisions to go through review panels, be persistent. Procuring financial assistance was a constant waiting game. Though my account was on hold (no bills due) during this period, I still received statements in error every month. Calling frequently was a necessary measure to ensure that my account was not placed in collections. Additionally, after receiving a grant award from the Leukemia Lymphoma Society, I acted as a go-between for the hospital billing and the organization. 

What I've REALLY learned:

If I had followed my advice in step #1 I probably wouldn't have advanced to steps #2 and #3. Not that they weren't good habits to build. Oh, the valuable lessons I've acquired...

Cleaning Cancer Out Of My Apartment: An Initiative

In continuing to make this remission thing more official, I recently un-medicalized my apartment. No government leaflets about "Cancer and Me." No excess pill bottles. No patient binder. What we've affectionately dubbed the Apothecary Table has been eradicated.

Part symbolic measure, part need to clean my dusty apartment, the moment I cleared this table I knew it meant something. In fact, I deemed it so meaningful I decided to put everything back on the table to take a picture so I could share the "before" and "after" with you all. 

And since I am a self-proclaimed pack rat, I didn't feel like I could just throw all this stuff away. It's  been banished to a box simply labeled "DO NOT OPEN." Enough said.

New Updates to Health Care Reform!

The Leukemia Lymphoma Society has begun hosting weekly webcasts dedicated to addressing concerns facing young adult cancer patients and survivors. I listened in for the first time last night, and panel members provided some creative tips regarding how to deal with the impact of diagnosis on health insurance and employment:

Benefits During Medical Leave: 

Through the Family and Medical Leave Act (FMLA), companies that employ more that 50 workers on a regional scale are required to grant employees 12 weeks per year of unpaid medical leave while taking care of loved ones or undergoing treatment. During this time employees are assured job protection and the preservation of health benefits.

Plus, read about new ground-breaking details on health care reform and preexisting conditions:

http://www.hhs.gov/news/press/2010pres/07/20100701a.html

Several states are operating their own plans while others will be run by the Department of Health and Human Services. Premiums will NOT be determined based on disease category or salary.

Find out how to apply here.

In the MOST delightful way!

Remission is upon us...and it could not have come sooner! Although I was very confident about yesterday's outcome, as my doctor entered the exam room she began, "So here's a loaded question..." My heart sank as I was convinced she was about to ask how I felt about more treatment or radiation. Thankfully, she began sharing the story of a new young patient whom she hoped to give my contact info. Sigh of relief. As I receive my amazing news, the Mary Poppins of medicine has already begun transitioning to the next patient. Not that I mind in the least.

I did ask whether or not the word "remission" should be entering my vocabulary. I was met by an emphatic "yes!" along with other wonderful phrases like "fully recovered" and "done!"


If you're concerned that this means the end of "The Cancer Dancer," don't worry.  I think this is a ideal place to raise awareness about young adults with cancer, a widely misunderstood group of patients. (Sorry, teens, it's not you guys.)

Voting for Remission

Final tallies have not been made, but polling sites are officially closed. And by polls I mean Highland Park Hospital Radiology Department. And by votes I mean the fate of my lymph nodes. I did double duty this morning with a PET Scan followed by a CT Scan. A final visit to my doctor on Monday will determine if. I. am. cured.

Stay tuned.

My love/hate relationship with steroids

It is an eternally changing status. During treatment, steroids serve to subsidize the harsh side effects of chemotherapy. I was given a strong dose of hydro-cortisone before the "D" segment of my ABVD treatment. Dacarbazine is the lengthiest and, as far as I understand, most aggressive of the four drugs infused.  I also took Benadryl just before treatment and a prescribed steroid in the two days afterward. This helped curb skin irritation, nausea, aches and pains: you name it. Great, right? Well, sort of...

I was grateful when, after explaining my considerable arm pain, she added the hydro-cortisone to my routine, and it made a huge difference in my comfort level. This coincided with a surprising inability to button my jeans. Bummer. In three short months I went from being unable to wear my clothes because of my emaciated state to just the opposite.

I made an uneducated assumption that after my chemo cycles were complete I'd feel the final effects for the usual 8 days or so and go on my merry way. I didn't realize that while I said goodbye to the drug pushing nurses, exhausted veins and debilitated immune system I was also leaving behind the magical effects of steroids. While the chemo drugs continue to attack,  the steroids eventually wear off. I'm gradually going back to my normal size (phew) and dealing with life after steroids: experiencing muscle aches and a seriously irritating ear ache.

And once again, I realize that this debacle is not quite over. The waiting is the hardest part.

Had to include this one. Looks like Cody makes a cameo:

Chemically-Untreated

I've battled over the pros and cons of buying organic produce for a long time. As organics become more readily available and widely deemed safer than the pesticide-ridden alternative I considered the expense more seriously. With no real explanation for my diagnosis other than "lifestyle factors," I am determined to take more control over what I'm putting in my body. This is an ongoing process that I started in January. No more aluminum was the first step:

As the Kellogg Cancer Center dietitian put it, there is no proven scientific link between cancer risk and organic food consumption.  Since nothing except genetics and lifestyle factors can explain my little ordeal, I'm slowly making the change anyway. I found a site that prioritizes what foods should be bought organic. Check out the list here. And find out what produce is safe to buy non-organic.

Thanks to Daily Candy, I also discovered The Organic Pharmacy: a site that lists carcinogenic chemicals found in many body care products. Can't wait to go through my arsenal of a make-up bag with that list. Or can I...

NEW ARTICLE: Cancer and Patient

An interesting article about how to proactively get yourself through treatment.  http://www.suntimes.com/business/pincus/2341066,FIT-News-Pincus02.article

Coming soon: my own philosophy/regiment...

Comments Section Update

I just discovered that the settings on my blog did not allow all readers to post comments. Crisis averted. I've changed the settings so that EVERYONE can add their two cents. Post away!

CONTEST ALERT!!! I like cold, fizzy beverages: an evolution

Supposedly the pharmaceutical industry has made great strides in developing drugs to curb the nausea attributed to chemotherapy. I don't care. I will put all my energy into avoiding non-mandatory medications whenever possible. (In lieu of Advil, waving my arms and legs wildly to relieve bone aches has been known to happen.) Therefore, I'm pretty much never without a fizzy beverage by my side for when the waves of nausea arrive.

And now, 12 doses behind me, I have become a serious connoisseur of the clear soda. (Colas have caffeine. Caffeine inhibits vein health.) And now a carbonated journey:

 You didn't think I was just going to lay all my nausea-combating secrets out this easily? Nope, I'm putting you all to work. Out of these six choices (Canada Dry Green Tea, Canada Dry ORIGINAL, Generic Seltzer, Whole Foods Ginger Ale, Schweppes and Topo Chico Mineral Agua) which did I turn to first but subsequently and overwhelmingly detest? What can I still stomach?  Determine the order in which these became my beverage of choice. Once a winning solution has been posted, I will provided a detailed explanation of this progression. (I know, serious incentive.)

HOW TO ENTER: In the comments section of this post, list the correct order and tell me YOUR favorite fizzy beverage.

WHAT YOU'LL WIN: Bragging rights. I don't have any advertisers to donate giveaway prizes yet. If you're so inclined I'll post your picture in a special post!