On Beyond Cancer

My life with metastatic breast cancer

A thank you – Steeplechase Run/Walk January 29, 2013

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I just wanted to say thank you so much to everyone who made a donation for the Steeplechase Run/Walk.  I apologize for not writing personal thank you notes out to everyone.  There are a few pictures of our team from the event here.  The local paper ran an article about the walk (you can read it here) and the total amount of money raised was $172,000.  Our team did a great job raising over $1200.  The money is used for educational programs at the cancer center. Next year’s walk will be held Sept. 29, 2013, so mark your calendars if you’d like to join us.  Here’s a cute photo of the kids race:

kids race

 

Cancer Etiquette January 28, 2013

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I found a couple of interesting articles online on cancer etiquette written by a woman with stage IV melanoma.  The first one, How to talk to someone with cancer, has tips on what to say and what NOT to say.  The article is geared toward social situations during the holidays, but the advice makes sense any time of the year.  Lots of the ideas are simple, like don’t ask what they did that “gave” them cancer and don’t say everything will be fine.  I have to say that tip #7, don’t be a downer, is a good one.  I really don’t need to hear stories about horrible things that happened to cancer patients.

The same journalist wrote an article for cancer patients called How to talk about your cancer.  She makes a few interesting points that I hadn’t thought of like setting the tone or letting people know what to expect, and says that allowing people to help gives them something they can DO, instead of just worrying about you.  Also a good reminder to give yourself a break:

Wonder Woman didn’t have cancer. I know it is heartbreaking to realize you can’t do all the things you used to do. But be honest with your boss if your new vomiting routine is getting in the way of paperwork. Tell the PTA to get another cupcake baker this year.

I’m not giving up my cupcake baking just yet, but I did remind my boss recently that I’d need some downtime during the 12 hour meeting he was planning.  And a funny coincidence – my friend Candi just sent me this Wonder Woman t-shirt in the mail:

wonderwoman

 

 

Legos and Cancer January 23, 2013

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I scan the cancer related news on Yahoo News regularly to keep updated on research studies and general cancer news.  Many of the stories are about famous people being diagnosed.  But recently there was an odd one: Brickstagram: A Man’s Journey Through Cancer With LEGO.  A 30 year old man diagnosed with throat cancer took a bunch of  photos  of Lego figures doing various goofy things, just to amuse himself during cancer treatment.  Then he created a website with the photos.  Who needs Zoloft when you have Legos?  Here are a few funny ones, you can see more here.

 

lego chef star wars gummies

 

Starting with some easy workouts January 22, 2013

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I’ve been trying some new workouts in the past few weeks.  Once you factor in the cold weather, my work schedule, childcare, and my energy level, it gets a bit tricky. 

 

We did have a few warm days so I was able to ride my new bike (hand me down from my sister) twice.  The first time was tough – it has been close to ten years since I’ve been on a bike.  I rode with the neighborhood kids, all under age 7, and most of them were better than me.  My second time out was a bit easier.  I found a nice, paved trail near our house away from traffic.  I’m not sure how long it is, but it does pass by the town library, so that will be a fun trip to take with Ethan when the weather is a bit warmer. 

 

I’ve also been using the Wii video game system to play virtual tennis and boxing.  I’m only so-so at tennis, but pretty good at the boxing.  I’ve KO’d a few people already.  It’s kind of therapeutic to punch the guys – they look like the old style Fisher Price little people. Hehe. 🙂

Image

Who remembers these?

I snuck in one quick workout on the elliptical too, while Ryan played nearby.  After a few minutes he got a little too interested and wanted a turn.

 

Patient Resources: General Cancer Info January 13, 2013

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If you google a particular type of cancer, you might get some really crazy websites, some with old or just inaccurate information.  Here are a few of the best sources:

Cancer.net – This site has information from the American Society of Clinical Oncology, but in lay terms.  Here you’ll find information on all types of cancer and  results of recent research in an easy-to-read format.  There is information in Spanish as well.

American Cancer Society – This site has information on various cancers, statistics on cancer in the United States, cancer fundraising events, a bookstore, and their various programs.

WebMD Cancer Health Center – This site is easy to navigate with its guides for each type of cancer.  It also has videos and photo slideshows and good information on home care.

Mayo Clinic – This site has all the basics plus good descriptions of the various tests that cancer patients might need.

 

Good test results January 11, 2013

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My blood test results look good.  Tumor marker is still on the decline; 146 this month (last month was 173) even with my reduced dose of Xeloda.  My liver function tests are also back in the normal range which is great.

Thanks to everyone who commented, emailed, and called this week.  I really appreciate all the support.  Most of the time I have a positive attitude, but every now and then it gets a bit overwhelming.  To be expected.  I’m so lucky to have all of you rooting for me.  Have a great day!

 

Doctor’s appt today January 9, 2013

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I had my usual monthly checkup today.  I am having some joint pain, but my doctor says maybe it’s just arthritis.  I was having bloodwork done anyway, so we’ll check the tumor markers just to make sure it’s not the bone mets acting up again.  I’m only suspicious because my left hip is giving me trouble and that was a problem spot before.  I’ll probably get those results in on Friday.  She said that she’s pleased with my response to the Xeloda so far and that things are moving in the right direction.

 

I gained a few more pounds, which isn’t a big deal, but it does mean I’ve have to get started on some kind of exercise routine.  I cancelled my gym membership last summer and I haven’t really done any consistent exercise since then.  I’m definitely going to try biking when the weather cooperates, but I’ll need an indoor activity too.  Might be elliptical.  Anyone have any good ideas?  I can’t really handle aerobics anymore which has always been my favorite.

 

My doctor also suggested that I try two of the support groups at the Cancer Support Community – Kids Connect/Parents Connect and the Advanced Breast Cancer group.  The kids group is for kids whose parents have cancer.  They have separate kid and parent groups that happen at the same time.  I knew about both of these, but have been a bit reluctant to go.  Fitting these kind of things into our family schedule is tricky.  I didn’t want to put Ethan in the kids group too soon because at this point his life hasn’t been disrupted much, but the doctor said it would be better for him to get comfortable with it before he really needs the support.  I haven’t gone to the breast cancer group because I wasn’t sure if I was ready.  I participate in a similar group that is online, but it’s a whole different thing to actually meet people face to face.  Sometimes I feel like I have too much to deal with on my own and meeting people with similar problems will just be too much to handle.  I’ve also been working with the cancer center’s social worker to set up a group for young people with cancer of any type.  They are trying to find someone to run the group, but it would deal with issues unique to younger survivors like marriage/dating, parenting, body image, etc.

 

Look for another update later this week.

 

Patient Resources: Free Services January 7, 2013

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Since I’ve started this blog, a few people have asked me for information for friends or relatives with cancer.  I thought I’d write a few posts on this, then put them together as a resource page on the blog.  The first topic is free services for cancer patients. There are many different programs that offer free services, products, or experiences for cancer patients; the majority of these are not specific to breast cancer.  Here are a few:

Comfortree Housecleaning Services – This organization provides monthly, non-toxic housecleaning services for cancer patients in select NJ counties.  They were a great help to us following my surgeries and are just lovely people.  (Check the top right of the homepage and you’ll see photos of some of their patients – the boys and I are in one of them.)

Cleaning for a Reason – National organization that connects you with cleaning services that are willing to provide free services for cancer patients.

One Gift– This is basically the Make a Wish Foundation for grown-ups living in NJ.  They fund experiences for cancer patients such as getaways and celebrations.  This group sponsored our trip to the Adirondacks in 2010.

For Pete’s Sake – An organization that provides respite vacations for young adult cancer patients and their families from the NJ, PA, and DE area.  Most trips are to locations on the east coast of the US.  The organization has two donated homes outside of the Disney area.  They sponsored our Disney trip in 2012.

Crickett’s Answer for Cancer – Provides free lymphedema sleeves, wigs, and spa services to women with breast cancer.  Not specific to low income.

Good Wishes Scarves – Free beautiful headwrap or scarf from L Erickson USA.

If you know of other organizations, let me know and I’ll add them to my list.

 

Steeplechase Christmas Party January 6, 2013

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Our family was invited to the Steeplechase Cancer Center Christmas party again this year.  The party was sponsored by the Somerset County Prosecutor’s Office.  Children of cancer patients were invited for dinner and a visit with Santa.  Each child received a gift purchased by one of the officers.  The highlight of the party was Santa’s arrival on the SWAT truck.  This year the boys also got to check out the inside of the truck, which they really liked.

Hahn-1

Here we are with Santa.

 

Cancer Couture January 5, 2013

Filed under: Uncategorized — onbeyondcancer @ 8:30 pm
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I’ve been working on decluttering the house and one of my recent projects, my clothes closet, got me thinking how cancer has changed my wardrobe.  My sister was visiting for the holidays and helped me with a major closet cleanout.  We sorted through everything, taking out items that didn’t fit, I didn’t wear, or maybe shouldn’t be wearing.  I donated the old stuff to charity and picked out the few good items to pass on to a friend who is about my size.  We took the clothes that were left and matched together various outfits.  I took pictures of each combination and plan to print them and put them in a mini photo album for those mornings where my body is awake but my brain is still catching up.  Here’s an example of three outfits we put together with a new dress my mom got for  me… (my pictures aren’t great, but you get the idea)

 

Dec 003

Dec 001 Dec 002

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I really recommend doing this with your own closet, especially if you’ve changed sizes or have some really old stuff.  The key is having a friend (or sister) who is honest and more stylish than you. 🙂  I realized that annual birthday shopping trips to my favorite boutique meant I had a great spring/summer wardrobe, but needed to add some more winter pieces.  Which of course led to a shopping trip, hehehe. 😉

 

Anyway, this process got me thinking about how I’ve adapted my wardrobe to my post-cancer life and body.  I stay away from anything too itchy or fussy and never buy anything that will need to be ironed.  Thanks to hand and foot syndrome, I only wear flats, mostly comfy ones like clogs or “pretty” Birkenstocks.  My other tricks are layering to manage hot flashes, using pocketed camisoles to accomodate prosthetics, and wearing loose sleeves for when my arm swells.  I also started wearing more skirts and dresses because they are just easier and more comfortable for me.  I’ve been following this blog to get ideas on mixing and matching.

 

My goal is to look put together from the outside, so that when I’m at a social event or at work, people see me – not a cancer patient.