Young People with Cancer Stats

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Over the last couple months I have seen and heard a number of times that 70,000 young people are diagnosed with cancer yearly.

Yesterday on our way home from a hockey game I said to Drew, “With the population of 250+ million people in the US, 70,000 is a sliver.”

“Katie, you can’t compare those two stats. They are not comparable.” Drew says.

“oh yeah. Duh! I have to compare the number of young people in the US with the young people diagnosed.” I respond.

Today I went on a mission to find out the population of young people in America. Turns out this is very difficult.

First, the definition of young people is subjective. The National Cancer Institute defines young people as adolescents and young adults (AYAs) between the ages of 15-39.

The population stats I started to research broke age groups up by 5 year age increments. So I looked to other sources on the US Census website.  This info was very cumbersome. I am not a statistician. I could sit here and do the math to figure out exact numbers, or even ballpark the number. But I thought why am I putting some much effort into this?

I really don’t care what the small percent of chances are of having cancer as a young person are.

What I do care about is the fact that not a lot of resources or knowledge surrounds the issues. While networking on the Facebook I came across this organization, StupidCancer.org where they caught my eye with this statement,

“Big box cancer organizations do not currently fund young adult cancer research or support the most basic of social services to the young adult support community, let alone sponsor or underwrite young adult advocacy groups. If these statistics make you want to puke and you truly want to start helping this new generation of cancer survivors, give to the groups without middlemen, where you know where your dollar goes and there is measured impact. Don’t get lost in a sea of 100,000 people racing for cures.”

My thoughts exactly since my cancer inception!

In the last year, there has been some hope when Huffington Post created Generation Why. With our new normal of social media and instantaneous fixes there is exponential opportunities for change.

You might think change for what? Well change in stigma. Change in young people thinking they are untouchable. Change in the availability of resources. This list is endless. Change is how doctors respond and treat young people. Change in insurance. Change is the buzz word of the century!

Your first step in creating change is to become knowledgable. I think first-hand accounts are most accurate. Read more blogs, then turn to news, then statistics. Then make up your mind. Don’t stop at surface level. Dig deep.

Should I Take Some of My Own Advice?

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A few days back I wrote about applying for jobs with cancer. I am starting out my career, but with a whole new perspective.

Upon Googling myself about a month ago I found that my cancer life is available for any employer to see. I pondered for a long time if I should battle to take the sites down and no longer post about my experiences and real life.

I came to the conclusion that this notion of having to hide my life due to my illness is absurd! How can we live in such an unrealistic society?

I really want to be a productive member of my community. My skills are just dying to be put to work!

I had dinner with my in-laws the other night and they mentioned that I would be better off explaining the gap in my résumé is due to an addiction and a stint in rehab. You know they might be right.

Why is cancer so scary to employers? Is it the unknown? Is it the time off? Is it the cost? Is it the chemo-brain? Is it lack of understanding or acknowledgement?

Well folks WELCOME TO THE REAL WORLD!

End of Treatment Cycle Gifts

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Finishing up a treatment phase is a huge milestone! I often thought to myself I should be doing something for all the staff that has been in my cancer world supporting me through the tough times.

After my last treatment on the books (until my next scan) I made it my mission to come up with unique thank you gifts for my stem cell transplant nurses, the radiation receptionists, and the radiation G-machine team.

I hit up Gander Mountain and Target for my materials

Materials included:

2-Hospital buckets (supplied by the transplant team)

8-Sporks (found at Gander Mountain or REI)

4-Packages of Mints

1- Large bag of assorted candy

3-Packages of frosted seasonal cookies

3-Cards

1-Package of String Stuffing

I started with the stem cell transplant station. Since there were at least 20+ people caring for me over the 20 days I was on their service I grouped together some candy and cookies. Who doesn’t love sweets?!

Next was the radiation receptionists. They have this bell one rings when they are finished with radiation. I DID NOT ring it. I felt it would jinx me. The plague above the bell describes the concept:

 Instead I took the saying as an inspiration for a card.

Sticking with the ‘who doesn’t like sweets’ theme this was the end product for the faces of daily radiation:

Finally, the radiation G-Machine Team was in need of something really cool. I love sporks! I think they are the coolest thing, and I give them to everyone. I thought it would be the perfect start.

Then I used some tricks of the trade in dealing with cancer and radiation. Mints! They passed the minutes under the beam. 

And of course more sweets! Final radiation Team G-Machine thank you gift:

So when you are nearing then end of a treatment cycle find some inspiration and kill some time saying Thanks!!

Cancer or Student Loans-Both I Guess

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Another sleepless night.  I was in bed thinking of all things I could write about: societal norms surrounding cancer vs eating disorders, buying a house, when to play the cancer card, getting a job with cancer, and the list goes on.  I have settled on something that has bothered me for a while.

Graduate student loans.

Take a look at this…

LoanSummaryLetter (1)_edited-1

Yup that is correct, $40,000 in loans for a degree I don’t have. Sounds absurd and unfair. Well really it is, but I have mentally made it okay in my head just to cope with not being able to return to school.

I was asked by my grandparents why I thought it was okay to take so much out in student loans when I knew I couldn’t pay it back. Let’s be clear here. I went to grad school in hopes of gaining valuable skills and a network to land a job that would afford me to pay back my student loans.

I applied for grants and scholarships at the time, but since I am white, middle-class, and from the midwest there wasn’t much out there. I was fine with this because I had a plan and I looked at the money as an opportunity cost.

When cancer came into my life I did not quit grad school immediately for a couple of reasons. First, I had medical insurance through my grad school that was a limited international study abroad plan, which I was advised I had to be enrolled to maintain.  Second, I didn’t know if I was to be cured of cancer in a short amount of time, so we devised a plan to work school around my treatments. Third, I love school and I needed it as a diversion from all the madness.

When the reality hit that I had a very long war ahead of me in Minnesota it was feasibly impossible for me to be grad school in Washington, DC. So I had to withdraw from my grad program.

So here I am, post transplant day 120 something with student loans looming.  There are no options for deferment. Some people say oh file bankruptcy. Wrong, student loans cannot be forgiven. I would have been better off dropping out of grad school and accumulating the medical debt, which is way more forgiving!

Due to wrongful advising, hasty decision-making during an awful time, and no financial security/jobs I felt my options were limited.

I ask those thinking about taking out student loans if you are absolutely sure this degree is worth the opportunity cost!

All said and done I can’t look back and change much. I can move forward and start paying these suckers off one month at a time with my husband’s money (the pendulum will swing back one day or better yet stop in the middle).

Now how to explain an unfinished degree on a résumé or better yet if/how to explain cancer in a job interview???

Oh man am I even healthy enough for a job?

—thought about it and why the heck not?!

Back to cover letter writing, networking, resumes, and job hunting!! 😉

Navigating Social Media with Cancer

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Expressing a cancerous life on the web

Expressing a cancerous life on the web

Tips for posting about your cancerous life on social media

1. Use a different version of your name. Be mindful that you will want to get a job one day when cancer is not the number one thing controlling your life. I use my maiden name for private social media.

2. Look at posts as a way of educating others-not bitching or whining that life sucks. Posts on FB don’t disappear. I might be so pissed off and knee-deep in pain and if I post something about it I will regret it when I am having a good day. Your friends and family know cancer sucks! No one likes those that post about how shitty their lives are. You can one-up them in your head.

3. Don’t overload with specifics. People do keep up to date with your status- but don’t need all the specifics. Use CaringBridge for the folks that want more information.

4. Change your privacy settings!!!  You’re not living that old life of drinking and partying or whatever. A new normal has set in. This is a good time to take the time to go through the 1000+ pics and albums from college that probably shouldn’t be visible anymore.

5. Blogging can be therapeutic. Reading and scanning blogs of others dealing with cancer can be the most authentic accounts of real lives affected by cancer.

6. Getting familiar with social media and what and when to post is a skill desirable by future employers. Keep in mind that you can be discriminated against. No one can deny that this happens. Keep your cancerous life private or under a different name.  I’m lucky… I got married and have a new name!

In our 20s we have aspirations and dreams of high value careers, finding love, and jet-setting to the ends of the earth. Okay, those were my dreams. My Facebook resembled all of these things. I posted pictures of my travels, I updated my education with the degree I was seeking, and I updated relationship statuses reflecting my love life. I was young, careless, and thought people cared.

Turns out I am still young, careless, and think people care. I just care a little more about who my friends are, what my privacy settings are, and who can converse with me.

Happy social media’ing.

6 Cancer Realities I Wasn’t Prepared For

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Realities of Cancer-I wasn't Prepared for them!

Realities of Cancer-I wasn’t Prepared for them!

I get it. But gosh when a new side effect, issue, or worry comes about I always say why didn’t I know about this?

My moments I wasn’t prepared for…(side note- everyone is different and don’t stay awake worrying and obsessing)

1. Pain drugs are great in the moment, but are awful to come down from.  I can totally see why people get addicted. Minimize taking them.

2. Fertility will be affected: Time doesn’t allow for much, but make sure you see a fertility specialist. I asked from day one. I saw a fertility specialist too late. There are grants for fertility treatments later on.

3. Radiation causes minimal pain in the moment, side effects kick in about a month later. The radiated part has become like a Charlie horse in my muscle.

4. Finances: Your dependency totally shifts. Keep receipts for everything-parking, drugs, food, supplies, etc. Apply for grants. Talk to a social worker at the hospital-ask for one because they don’t offer one-social workers are often taboo for young people. USE THEM–they know where to get some money from–I wish I did early on.

5. Insurance companies become an annoying family member-they just don’t get it. You will find that you know more than most representatives you speak with.  Never take no for an answer. Never pay a bill until you are healthy-usually takes months for them to have the correct statements anyways. Don’t let them harass you. Get to know one person dealing with the case- they are human and they do care about your wellbeing, but they have a nasty job to do.

6. People have crazy expectations—Don’t care! Trim the fat-don’t feel obligated to see, be kind, or deal with those that bring you down.  No one else will understand all of you- but you can pull yourself out of it. Depression is inevitable.  Take care of yourself and no one else.

 

I have been thinking of all the things I wasn’t prepared for when it comes to cancer.  The doctors and nurses do their best explaining all the immediate worries, but they often leave out the long-term side effects and all that happens when you leave the hospital. I have come to realize that this is because they want to reduce all worries and concerns, and really emphasize focusing on the moment.

Hair, No Hair, Hair: Tips to Manage Regrowth

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Pre-Stem Cell Transplant Hair—Post Transplant Day 100 Hair

Chemotherapy takes hair away, but time brings it back!

Some tips and tidbits about regrowth I have come to realized lately—

1. Your hair is most likely going to fall out whether you believe it or not.

2. It will grow back- most likely 6 to 7 weeks after your last round of chemotherapy.

3. When it does let it grow through all the ugly stages.

4. Make an appointment with a hair stylist that is familiar with hair regrowth because if you’re anything like me you’re probably not familiar with starting fresh-recommend documenting the stages for your stylist’s professional book.

5. Get some great product and buy that first comb to tame those few coveted strands.

6. Growth shampoo and conditioner stimulate the follicles for faster results. I have been using L’ANZA Healing Nourish for the last 2 weeks and my head has filled in a lot.

Getting use to the ‘ugly’ stage of hair regrowth

7. They say your hair will be different than it was. Mine is way softer.

8. People will touch your head.

9. Pick a natural part and start taming your strands that way. I tend to do the Bieber swipe to the right.

10. Your hair will grow a 1/2 inch a month, so get those Pinterest boards started with short hair styles to rock!

The Greatest Fear: How to Manage Hair Loss

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I was going to take control of this situation real fast. We planned a special day at the salon to mark this devastating moment. My 3 sisters, mom, aunt, and girlfriends gathered around as I said peace out to my hair. 

Note to those considering donating:

Donate before your first round of chemo. Don’t wait like me because your hair might not be of use.

My hip new hair…

…only lasted 9 days.

I was sitting across the table from Drew and he said, “You’re thinning bad.”

I didn’t want it to be true, but those strands were coming out FAST!

It felt like spiders crawling all over the back of my neck.

Note to those about to lose their hair:

Be prepared for scalp pain-like you have worn your hair up in a pony all day or like someone is pulling on it.

I was going to take control of this situation real fast. Time to shave it off.

Tip and tricks for shaving:

1. Use a garbage sack with a slit for your head to keep from getting hair everywhere

2. Make an event with family and friends to have them cut some of your hair.

3. Cut bulk off in sections

4. Shave after

Note: Hair loss will occur first in your part and shaving doesn’t hurt. 

The greatest fear of all for a young woman with freshly coping with a cancer diagnoses: losing those precious locks that define femininity.  The first moment I was alone in the hospital after the news was at 4:30 AM New Years Day.  I remember thinking of only losing my hair and bawling-yup the ugly-face cry until my mom came at 5 AM.  “What about my hair?”

“Well Kate let’s not jump to conclusions”

“It’s just so long…”

Only weeks later it was time to cut it and donate it to Locks of Love.

Don’t be afraid to be bald– cry, take ownership, and then thank those that ask why your bald.  Admire questions as they don’t show ignorance: it is a time to raise awareness and show that you own this bug within you.

Peace Corps Life—Transitioning still

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So I am sure all the prospective volunteers and current folks in PC are doing a bunch of blog reading like I did when I was unsettled or in the process of applying. I thought I would share a recent “When I was in PC story”

I am in the process of buying a home with Drew. He is a country boy and I am a city girl.  So, like most couples we settled on suburbia, but urban living in suburbia. The process is very trying and annoying. I am not totally sold on our pick of suburbia, and when the potential that it won’t work out I hit the Internet in full force researching lofts in the big city. I love the raw city life. The hustle and bustle.

In my Peace Corps days I was one of the lucky volunteers that had the opportunity to live in 5 different housing scenarios. I had some misgivings in some of them, but some of them were absolutely perfect. The problem was I kept thinking that if I moved or had better living scenarios it would solve my aching for all my issues to go away.  You know that nagging feeling that something just isn’t working. So, I moved in with a dear and kind family. Life with my pseudo family was exactly as I wanted it to be.

Since I didn’t have a good experience with my host families as a Peace Corps Trainee I thought why not give it another try as a Peace Corps Volunteer.  All was gravy until Peace Corps pulled the plug on it because of ‘security reasons’. hmm.  Off I moved into a ‘better’ house where I lived alone directly across from my school with a wash machine and a new stove!  I really convinced myself that I would be happy if I had all the fancy amenities.  Boy was I wrong.

Turns out that the house I lived in was a fun party with other volunteers and the place where I would sleep for days–mild form of a depressive state. Not much changed. After a mold problem, broken computer disaster, and an infestation of fleas I reached my boiling point.

Some times when something isn’t right, and you try so hard to make it work it just isn’t meant to be. Is suburbia the right place? We shall see. Not afraid to try.