Chemopalooza

The Sorta Good And The Crappy

2009-07-06T12:07:00.002-04:00

Well folks, I've got some sorta good news and some crappy news. First let's start with the crappy news. I just found out that I didn't get the job at Dana Farber and it went to an internal applicant. I'm really bummed because I thought I was perfect for it and it was all finally going to happen. But alas, someone already in their system got it.

Now for the sorta good news. I talked to my oncologist the other day and he gave me the results of my PET scan. He said it doesn't look like Hodgkin's, but it looks like there's something in my throat - most likely an infection. But he sounded weird about everything, he's a pretty serious guy anyways, so I'm not sure what to think. Either way, I've got to get rescanned in September at some point so I can be officially clean again. So for now, I'm taking it as I'm clean with some sort of leftover infection from my bout with strep or whatever it was last month.

I'm still on Block Island and the weather and fresh air is perfect. I just got back from walking my lazy pup and am probably heading to the beach shortly. Might as well enjoy the vacation while I can :)

Cancer Fighters Award 2009

2009-07-05T12:37:00.003-04:00

I stole this post from Duane because he wrote it so well :)

Great Nonprofits.org is running a campaign to identify the top non-profits across the country serving the cancer community.

People who have personal experiences with organizations (volunteers, clients, board members, donors) are encouraged to post reviews and stories on Great Nonprofits.org, and the nonprofit that receives the most positive reviews during July will win the contest. Individuals who participate also have a chance to win prizes.

I'm Too Young For This, Ulman Cancer Fund For Young Adults, and First Descents are just a few of the organizations nominated.

Visit Great Nonprofits.org for more information about these organizations and to post a review for the one that has made the most difference for you.

Check List Almost Complete

2009-06-30T20:38:00.004-04:00

PET scan complete. Job interview, done. Next up, Block Island! I'm heading there first thing tomorrow morning and looking forward to some quality time with my parents, dog and the beach!

As for the job interview, no updates yet but I think it went really well. They told me that they wanted to fill the position as soon as possible, so I'm hoping I'll hear very, very soon. Hopefully I'm not crazy and they really did like me :) I'll be sure to post an update as soon as I hear anything!

Short post, but I wanted to provide a quick update on everything!

Rescheduled PET Scan

2009-06-29T17:29:00.003-04:00

Just a quick update to let you all know that I rescheduled my PET scan for tomorrow afternoon. I won't get the results for a few weeks because I didn't want to do an appointment by myself and am pretty sure I'm clean anyways. I'm hoping I can just get the results over the phone and skip the appointment :)

So anywho, think clean thoughts tomorrow around 2pm!

XO

OPI and Look Good...Feel Better

2009-06-29T16:57:00.007-04:00

Hi folks. As you know, I love the Look Good...Feel Better program. If I could go every year and pretend I had cancer, I so would. I also just love seeing women's faces when they feel fabulous after the program, and enjoy the laughter that goes along with the whole process.

I just found out that during July and August, OPI will contribute a portion of the proceeds of every bottle of its top-selling Bubble Bath Nail Lacquer sold, with a minimum contribution of $25,000, to Look Good...Feel Better. AND it's actually a good color that goes with everything! So start stocking up, but wait until July of course!

XO!

Job Hunt Looking Up

2009-06-27T20:43:00.006-04:00

I've been having more success lately on the job hunt, hooray! No job yet, but I've had two interviews this month and I have an in-person interview at Dana Farber on Monday! Yes, Dana Farber. It's the first time they've actually responded to any of my 30+ resume submissions, so I'm pretty excited at the possibility to get my foot in the door. Hopefully my volunteer work will give me some good karma for it :)

After my interview on Monday I'm heading to Block Island for a few weeks with my family. I'm hoping the weather finally starts to warm up here and it stops raining so I can go to the beach!

I got blood work done last week to make sure I didn't have mono or anything since I've been so run down. All the results came back clean except for the fact that I'm low in vitamin D -- thanks Mother Nature! I'm hoping a visit to the beach and quality time with my dog will re-energize me a bit.

Anywho, that's the latest and greatest! Please think happy thoughts on Monday that I'll like them and they'll like me!

Deadline Approaching - LLS Financial Aid

2009-06-15T23:19:00.005-04:00

The deadline to apply for the Leukemia and Lymphoma Society's financial aid is Tuesday, June 30th. If you're going thru treatment for a blood cancer or did this year, or had up to $500 of cancer-related costs (co-pays, prescriptions, etc.) you should definitely apply for this ASAP. To fill out the form, click here. They also have a Co-Pay Assistance Program which you can read about here (warning, it's a bit more confusing). I highly recommend calling LLS (800) 955-4572 with any questions you might have, since it can be overwhelming, and because the deadline is only 2 weeks away.

Here's the kicker about the financial aid program that I learned about today, it's been $500 for a few years but due to the economy the reimbursement is being cut down to $150 for next year (their fiscal year starts July 1, 2009). My suggestion to you folks is to submit for both years, if possible. Get all your paperwork in for the June 30 deadline for the $500 reimbursement, and then get started on filling out the paperwork for the 'new fiscal year' shortly after to guarantee you get the $150 incase they run out.

I hope you all find this info helpful, I know I did when I was going thru treatment. Every little bit helps folks!

XO

Flag Day!

2009-06-14T23:24:00.002-04:00

This year's Flag Day almost passed me! It's officially been two years since I finished chemo! Pop that champagne folks! Of course, I still haven't done my two year scan yet since my throat infection of sorts hasn't fully worked itself out of my system yet... but I'm pretty sure all is clean!

Just thought I would share while it was still June 14th!

XO

Sixty Percent of Cancer Patients Try Unconvential Treatment Methods

2009-06-09T23:02:00.004-04:00

I just came across this article written by the Associated Press that discusses how sixty percent of cancer patients try non-traditional, and typically not authorized by their oncologists, medications and supplements in order to boost immune systems, fight cancer, slow growth, etc. which can ultimately kill them.

Please read this article when you have a moment, it references some drug interactions that might be harmful to you whether you're currently being treated for cancer or not. Here's a few examples from the article:

"Examples of potential harm:
-Vitamin E can prolong bleeding time and has forced cancellation or delay of cancer surgeries; some studies suggest it may raise the risk of certain cancers.
-Beta carotene, a precursor of vitamin A, may raise smokers' risk of developing lung cancer.
-Folic acid supplements may raise the risk for precancerous growths in the colon.
-Vitamin C in large doses may help cancer cells resist chemo and radiation."

So if you're a smoker, make sure to lay off the beta carotene folks!

PET Scan Canceled

2009-06-07T13:51:00.002-04:00

Hi folks. Just a quick update to let you know that I had to cancel my PET scan for tomorrow because I'm soooo sick. There's thoughts that it's strep throat. The entire left side of my throat is swollen and I can't swallow or anything. Oh and I'm running a 100 degree fever. I thought about going to the ER but was told it could take hours and I don't feel good as is. I'm such a baby when I'm sick. Ugh.

XO

Oh Snap! Chemopalooza Ranked Again!

2009-06-05T15:47:00.002-04:00

I was just checking out my hits this afternoon and I noticed that Chemopalooza has been ranked number 17 of the Top 50 Cancer Sites & Resources by the Asbestos News Cancer Blog.

Check out the list, it's pretty comprehensive!

XO

Tick, Tock...Flag Day Is Approaching!

2009-06-04T19:02:00.003-04:00

Flag Day is approaching folks. And what exactly does that mean, you ask? Well it means the two-year chemoversary! It's June 14 so mark your calendars! Also, this coming Monday I have my six-month PET scan. Please make sure to cross everything you own and think happy thoughts for good news. I think I'm going to finally pop open that bottle of pink champagne that Wullie and Veronica got me :)

As for other news, I've had a job interview finally. Well, really a pre-interview with a recruiter, but still it went well. It's a move in the right direction. I'll post more when I know more, it's a "confidential search" right now, but it's not cancer-related incase you're wondering. Anywho, I'm hoping to find something in the next couple months.

Anywho, that's all I've got for now! Stay tuned and think clean thoughts!

XO

Hospitals Using New Marketing Methods To Attract New Patients

2009-05-27T13:25:00.003-04:00

Imagine if your hospital planned on capitalizing on your brain tumor surgery by filming it and broadcasting it on the web -- and oh yeah, advertising about it showing someone better looking than you in the ad. It's happening, hospitals are trying to stand out by utilizing Twitter, YouTube, Facebook, blogs and other crazy marketing tactics to get new patients and increase revenue. You can read all about it in this New York Times article that came out last week by clicking here.

13 Year Old Boy Returned For Treatment of Hodgkin's

2009-05-25T23:33:00.003-04:00

Thirteen year old Daniel Hauser was returned to Minnesota to receive treatment for Hodgkin's Lymphoma. The boy had received one round of treatment and then they stopped citing religious beliefs and started "natural healing practices inspired by American Indians."

Most people talk about Hodgkin's Lymphoma as the "Good Cancer," and sometimes I agree. Obviously, I'm still here, and know lots of folks that have beat it... but I also know several that lost their battle against the beast. So it's tough for me hear people talk about it so lightly like it's just like getting a bad haircut. I even know someone that has beat it, years before me, that talks about it as if it's no big deal, even to people she might meet that have been newly diagnosed with cancer. Tact.

Anywho, back on topic here, this poor 13 year old boy has a 5% chance of surviving without treatment according to the doctors in the article. Thankfully, he's back and being ordered to get medical treatment. I'm sure the mother just thought it was somehow in the boy's best interest, perhaps she was concerned with his side effects and freaked and played the religion card. Who knows. And if that's the case, there are always more drugs out there to try to feel better. Prescribed ones :)

You can read more about the story here.

Let's all hope this boy can beat the Hodge now that he has the right medical care.

XO

Comfort in the Past

2009-05-21T23:57:00.002-04:00

I know people say you're supposed to live in the present but I often find such strong comfort in the past. I went to my friend Paul's wedding this weekend, we went to high school together and the wedding was a mini high school reunion which should make most people freak out a bit -- and okay, okay, I did a little but mostly I was completely at ease. It's weird and comforting to see people that knew me when I didn't have a care in the world, and when I was umm skinny and hot (ha ha) and when you have small talk it's not all superficial stuff about jobs and being all important. We all just kinda picked up where we left off -- or at least I did. I doubt if I grew up somewhere fancy that it would be the same situation, but being surrounded by normal, average people that didn't grow up with money or anything was very, well comforting.

Oh and bad news. The green dress didn't arrive in time. But I got it a few days later and it's beautiful... so it's still a keeper! I also got the new Wii Active game and tried it out for the first time yesterday and my entire body is sore, so that's a bonus :)

All for now!

XO

Slacking, Dresses, and Hunting - Oh My!

2009-05-13T18:55:00.003-04:00

I'm a Chemopalooza slacker. I just really haven't had much stuff to write about that's worthy of posting.

This weekend I'm heading to an old high school friends wedding, and *hopefully* will get a really pretty dress in the mail before it! One of my biggest annoyances is dress shopping. Okay, I get it, I'm not a size 6, but I'm also not a size 28! I still want to look good and shouldn't have to have someone make me one from scratch just so it comes in my size. After a long day of shopping last Sunday I came home empty handed. I finally did a little internet hunting and sure enough found a few dresses I liked online in my size! It's a big of a crapshoot if it'll make it in time and I have an alternative dress to wear if needed, but I'm excited I could find something online. Here's a picture I found of it online, it's really small because it was all I could find. I must have bought the last one :)

Other than that I've just been trying to get back into full-time job hunting and staying busy. As of now, it doesn't seem that my freelance gig is working out. They've put me on hold until they put together a marketing plan and budget. I really need organization and stability so I'm not thinking it's going to work out, but we'll see. I'm also trying to really figure out what exactly I want to do for a career. Big task, I know. But that's what I've been up to lately.

Post-Chemo Hair

2009-04-30T16:07:00.005-04:00

Helllllo my cancer pals! I just got my hair colored a few days ago -- it's my usual routine every 4-5 weeks since chemo. Before chemo, I liked to color it, but I didn't have to. It's now all sorts of weird colors, including a spot in the front where white is growing in. It's also pretty light on my hairline, almost blonde. It was light in the front for a while, not gray, just light brown/blondish.

But now I've been coloring it post-chemo for about a year and a half. It's starting to really look like my old hair, except for the fact that I have to color it AND that the color doesn't stick to it. My hairdresser has to use the darkest dye before black in order for it to stick, and now that's not even sticking!

I know, I know! At least I have hair and it's nice and shiny from the hair color... just not at my roots! I just want to know if anyone else has experienced this?

Thanks!!

Back From BI

2009-04-29T10:43:00.002-04:00

I'm back from a weekend on Block Island. It was just what I needed. It's been freakishly hot here for April -- in the 90s, and going to there where it's much cooler was perfect. A lil fresh air with my dog and family. We even took him for a walk on the beach and it was perfect there! We took some pictures but they're on my mom's camera, so I'll post them another time.

Anywho, just wanted to post an update that I basically don't have anything to write about at the moment but just got back from a mini vaca. I'm planning on going there again soon for like a week or so, might as well since I can work from wherever :)

XO

It's Never Enough

2009-04-23T22:46:00.003-04:00

Ever feel like you're terrible for being a survivor? Like some organizations look down on you for not eating, sleeping and breathing cancer now that you're a survivor? For not knowing everything happening with every organization? Sometimes that's how I feel. And let's face it, if you know me, you know I do a LOT for the cancer community. But if it's not the Kool-Aid everyone else is drinking sometimes you get snubbed.

Here's a short list of the things I do:

- I volunteer at local hospital in the oncology unit and resource room helping newly diagnosed cancer patients learn the resources available to them. I sit and talk to the lonely people and make sure they have someone to talk to and put a smile on their faces.
- I help out The American Cancer Society in their communications department. I write up stories about cancer survivors and people fundraising for events.
- I was volunteering until recently at the Leukemia & Lymphoma Society doing PR for them as well.
- I keep Chemopalooza.com active so that people searching for resources can find them here. And believe me, they do.
- I respond to several current cancer patients each month that find my blog and seek support and encouragement.
- I allow college students working on research, writers working on stories/books, to interview me so that care can get better for future cancer patients and so people can learn they are not alone.

And this is just a short list of the things I do, for FREE, for the cancer community. Yet, sometimes people act like it's just not enough. Well, I think it is!

XO

Finally Updated My Blog Links

2009-04-23T02:19:00.002-04:00

So it only took about 2 years, but I finally updated my list of blogs that I frequent. Is your blog not on there and:

A) You think it should be
B) It's interesting or helpful to cancer patients
C) We're cancer pals and I forgot you (whoops!)

If so, let me know and I'll do my best to update the list again.

XO

Tired Is An Understatement

2009-04-19T02:46:00.005-04:00

I've been kinda loopy lately. I've been needing lots of naps this week and then my sleep schedule gets all screwed up. I've got an appointment to see my PCP soon and we're going to do some blood work I've been putting off for some time. I'm also thinking I've developed a delayed version of neuropathy. I've been noticing it getting worse over the past month or so. My arms and legs have been falling asleep very easily, especially when I'm sleeping. I wake up and my arm is entirely numb. I'm also having weird stuff going on with my feet. They feel kinda swollen at all times. So then I get Googling on these newly found side effects and I come up with either neuropathy (which makes sense) or diabetes (not cool). Bleh. I need to get active. More active. But I like naps so damn much. Hopefully this will all be determined and I'll get back to normal soon. Oh and my attention span is exceptionally low these days. Dammit.

I feel like I'm missing something in my life and need to find it. Bold statement, but I think that would help.

Guest Blog Post - Think, Question and Shout When You Need To

2009-04-16T20:56:00.006-04:00

Hi All - I'm not typically a guest-blog-post-welcoming-kinda-lady but I really wanted to share a guest post from Kairol Rosenthal who has more tips and tricks in her big toe than your hospital does in its entire social worker staff. So without further ado.... enjoy!

XOThink, Question and Shout When You Need To

By Kairol Rosenthal

Kelly saw me get all fired up about my underground cancer resources when I was giving a speech at the I’m Too Young for This Conference in Boston and she asked me to write a bit more about it on her blog.

When it comes to getting what I want in the cancer world I have no shame. What could be more important than stealthy thinking and pushing the limits in order to try to save my life? I’m big into being crafty, leaving no stone unturned, and taking advantage of every free resource that is out there.

I want to share with you a little snippet from my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, to show you just what I mean. When I was diagnosed with cancer, I had no health insurance, and fought aggressively for it on my own. But once I got insurance, I still had tons of expenses and paperwork to deal with:

“Through a long process of hard, desperate phone calling, I found Nicola, whom I referred to as my personal goddess of health law. She was a law student who took me on as a school project. Because I was her only “client,” she devoted lots of attention to me. We were the same age, and it put me at ease to talk about these overwhelming administrative issues with someone who was approachable and did not scoff at my naiveté. She wanted to succeed in fighting for every benefit she could find for me. She filled out all of my paperwork when the side effects of my meds made my head spin too hard to concentrate. She accompanied me and spoke for me at my Social Security interview. She made the mysterious and intimidating healthcare system approachable and surmountable. She helped me organize my medical records and legal documents. She appealed for an eighteen-month extension of my COBRA benefits and won. She discovered that the State of California owed me money for disability that I had not known I was entitled to. I cried the day that she brought me a $9,000 check, which without her help would have sat in the state’s coffers instead of in my bank account. The money paid for my rent and groceries for an entire year.”

My motto is “Think, question, and shout when you need to!” I believe that sometimes we all need someone to shout with us and for us. I worked my butt off finding the resources that saved me time and money during my cancer care and figured, why should every young adult cancer survivor have to keep reinventing the wheel? So, I wrote my book, which just hit the shelves. If you want to pick up a copy it is available on Amazon and everywhere books are sold.

In my book I include instructions on how you can find a Nicola of your own. For a sneak peak at this and other health insurance and financial guidance tips, go to my website and download for free the first chapter of my book “Ramenonics”, which covers these topics in the resource section: www.everythingchangesbook.com

Have you ever used another person or organization to help with your health insurance or financial matters? What is the craftiest thing you have ever done to advocate for your care or get what you need from a doctor, nurse, or insurance company? I call cancer an emotional, physical, and administrative experience. Do you agree?

Vegas Cancer Patients Receiving Death Sentence

2009-04-09T23:14:00.006-04:00

Last week 60 Minutes featured a story about the Las Vegas public hospital, University Medical Center, basically giving the less fortunate locals a death sentence if they're facing cancer without adequate insurance. The hospital informed it's chemotherapy patients that they were closing it's oncology unit for all outpatient services. You can read more about this story and watch the 60 Minutes clip by clicking here. Stupid recession.

XO

I'm Still Too Young For This

2009-04-05T00:06:00.009-04:00

Today was the "I'm Too Young For This" Symposium in Boston -- not to be confused with the i2y organization based in New York. If you've been with my blog for it's existence, or read most of it, you might remember me blogging about going to this symposium 2 years ago (wow!) when I was going thru treatment for the hodge. It was my first chance to meet people my age, battling the same beast I was--cancer, as a young adult.

Going this year and going 2 years ago was quite different for many reasons. My main one was before I really didn't know any cancer folks. I didn't know anything of this business, was losing my hair, puffy from steroids and well just not feeling up to all the networking even though that's what I went for. I didn't know soul in the conference then either - and learned that many people brought loved ones, and had I known then, I would have brought a cancer wingman -- who knew I needed one!? You would think the cancer card would suffice.

But 2 years later it was much more different. My blog has lead me to meet many people I wouldn't have otherwise met -- in person or just via the interweb. I've found myself much more. I have a broad network of cancer folks, of every diagnosis and background, and of course my strong group of fellow Hodgers.

At the conference this year, I had a slight agenda -- meet more people, learn more about advocacy and of course network, network, network. Afterall, cancer advocacy is something I've been looking into in my soul searching expedition this year. I'm starting to already see the major gaps in the large non-profit organizations and it makes me want to re-evaluate some things and learn more about process, where their money goes, how they actually help people like me, not only women with breast cancer (no offense ladies, I know it's important) or help people quit smoking but not spend money on lung cancer research. But I digress... me + running around all day = lots of tangents.

Anywho, it was great to freely network, learn more at the event. Realize that there are other people out in the community doing great things that aren't necessarily attached to a giant non-profit brainwashing community. People that are really interested in helping, for what they believe in!

I also got to meet Kairol Rosenthal, author of the book Everything Changes. She's a Chemopalooza reader, which is always the biggest form of flattery this girl can get. She is also an amazing public speaker and provided the opening keynote speech at the event. It hit home to so many people in the audience. They were all raising their hands with questions about what she had seen during her 5 years of putting together her book, as well as own personal cancer survival tactics. She's tapped into networks and resources I've never even thought or knew of. We actually discussed doing a blog switch and being guest posters on each other's blogs. I had no idea at the time what either one of us could do, but now I think I have a few more ideas on what she could discuss here. Let me try and read her book (and I have no attention span for full books, so we'll see) but I think perhaps something about navigating thru the healthcare system and becoming your own advocate might be a good broad topic for her -- stay tuned. Oh and I'm open to suggestions on what I should write for her blog, I'm more of a jack of all trades, master of nothing kinda cancer lady, so any suggestions would be appreciated.

Anywho, I've got some networking to-do's, some personal writing to-do's and some more learning to do. But what a difference two years ago makes...actually now that I think about this, I actually remember that I took this picture the day of the conference to gauge my hair loss...

Puffy-faced, thinned eyebrows, but still shiny locks! I washed my hair for the occasion, which was a HUGE deal :)

Ahh the infamous thinning part

And me on Thursday posing for a picture I was sending to Veronica of my fancy shiny locks... my brows are unfortunately still a bit thin and not anywhere near as dark as they were before, but I'll take 'em for now :)

Anywho, that's all for now. I'm sure I have a bunch of stuff I forgot to post, but it's 1am and I'm sleepy and I need to wake up before noon tomorrow because I'm treating myself to a massage and a facial tomorrow.

Two Cases of Children's Death of Lymphoma Due To Parental Neglegence

2009-04-01T01:03:00.004-04:00

Today I heard the second story in less than a month of a child's death due to Lymphoma -- one of the most treatable cancers -- because of their parents selfishness and lack of medical attention and care.

The first case was of 8 year old Willie Robinson of Ohio who had been diagnosed with Hodgkin's Lymphoma not by his family doctor or local oncologist, but by his coroner. He had never been taken to the hospital or doctors for a diagnosis. According to his aunt in an article she had begged his family to take him to seek medical attention. The boy was pale and covered with lumps showing the state of his cancer progression. Even the boy knew something was wrong and he had begged and pleaded to be taken to the doctor since he couldn't even find the energy to climb up the stairs in his house. Willie's parents were indicted on charges of involuntary manslaughter, child endangering and felonious assault, according to court documents.

The second case was in Boston and a 9 year old Autistic boy died of non-Hodgkin's lymphoma on Monday. The cause of death -- cancer and lack of medical attention. The mother had missed or canceled many of his chemotherapy appointments and most of his prescriptions went unfilled. The boys cancer progressed into Leukemia before he passed away. The mother is awaiting trial and currently only being charged with child endangerment.

This news is just so painful to read. It makes one wonder if the costs of medical attention were to blame for their children not getting treated. Of course, that's still not an excuse since there are free clinics and even hospitals that will take people without insurance. Heck, even if you just rack up tons of debt, at least their children would be alive to see their 10th birthdays.

XO