On Beyond Cancer

My life with metastatic breast cancer

Eating well July 12, 2014

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This last month has been a tough one, and I’m really thankful to all of you for your positive messages, help with the kids, chemo buddies, and all the other things you do to take care of our whole family.  Lately though, lots of people have been feeding us, which has just been wonderful.  I’ve got a few photos of the yummy food we received:

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Farmers market care package from my dad and stepmom. Potatoes, tomatoes, zucchini, cherries, raspberries, peppers, peaches.

 

Baked potatoes and all the fixin's  from my friend Cheryl's mom, Maryann.  She is an amazing woman and had herself surgery only a month ago!

Baked potatoes and all the fixin’s from my friend Cheryl’s mom, Maryann. She is an amazing woman and had surgery herself only a month ago!

 

Platanos maduros (grilled plaintains) and corn tamales made by my cousin Marie.  Food was delicious but the best part was a great visit with her and her sister Sandy!

Platanos maduros (grilled plaintains – my fav) and corn tamales made by my cousin Marie. Food was delicious but the best part was a great visit with her and my cousin Sandy!

 

Rice and beans also made by my cousin Marie.

Rice and beans also made by my cousin Marie.

 

I don’t have pictures but my mom brought me casseroles, orange juice, and her famous macaroni salad.  My mother-in-law and father-in-law often invite us for swimming and dinner.  I put the kids in their pj’s and brush their teeth before we leave, then we get home and pop them into bed, so easy.  Also, my friend Cheryl made us a lovely pasta dinner this week.  Thanks to everyone, you are so fantastic.  It’s also a special treat to try new dishes!

 

PET scan February 21, 2014

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Had my PET scan yesterday.  Wednesday night I had my typical post-chemo body aches and slept poorly because of it.  Combine that with fasting until 1:30PM and it was a tough morning.  There is nothing special to drink for a PET scan except water, so fasting and the injection of radioactive glucose (sugar) are the only tricky parts.  Once I finished the scan, had something to eat and a couple of Advil, I felt much better.  I’ll call today to check, but most likely I will get the results Monday.

 

I had to stay 5 feet away from the kids for the rest of the day to avoid exposing them to radiation, but they didn’t get too upset.  I told Ryan we’d read our story like in school; he could sit in a chair a few feet away and I would hold up the pictures for him to see.  Ryan has a little routine for night-time kisses – he likes to give me a kiss on each cheek and then a hug like he’s European.  Haha.  Last night we had to blow our kisses good night instead.

 

Young Survivors Support Group tonight February 17, 2014

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Tonight I have my meeting with the Young Survivors Support Group.  It’s really a great group of people at all stages of cancer and different cancer types, some working, some home with kids, some on disability.  The common thread is that everyone is under 45.  In case you know anyone who can benefit, here is our meeting schedule for 2014 (tonight’s meeting was rescheduled because our group leader was ill):

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Cancer center christmas party December 20, 2013

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Each year the Steeplechase Cancer Center and the Somerset County Prosecutor’s Office throw a Christmas party for children whose parents are being treated for cancer.  The prosecutor’s office employees purchase gifts for each of the children and Santa arrives on a SWAT truck.  It’s always a fun event, but it was extra fun this year since the women from my support group were there with their kids.  We’ve had a few playdates, so the kids are good buddies now.  I think that it has helped them to know that there are other kids in the same situation. 

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Visiting with Santa.

 

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Having a little snack.

 

 

 

Retirement Plans December 12, 2013

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A few people have asked what I plan to do when I retire.    Of course I have two little boys who will be happy to have more of my time.  When I told them I wouldn’t be working after January, Ethan said “Yes! Now we can have more playdates.”  Haha.  So I think I’ll be a chauffeur.  What he doesn’t know is that while he is playing with his friends, I get to chat with their moms who are MY friends. 🙂

 

Doctor’s appointments, scheduling appointments, and dealing with insurance issues keep me busy for at least a full day every week.  I’ll have time to attend programs for cancer survivors like exercise classes, stress management, support groups, and information on new treatments available.

 

I’ve already talked with my boss about volunteering a little in the office.  I expect I will mostly be working on writing and editing articles and grants.

 

I’ve signed up to volunteer one morning a week at the Wellness Boutique at Somerset Medical Center.  They sell wigs, special lingerie and swimsuits, and other items that cancer patients need.  I figure that since I’ve used most of the items, I can probably help people who are wondering what they should pick.  The boutique manager is a great lady who has been a big help to me, so this will be a fun and hopefully fulfilling opportunity. 

 

A few other odds and ends I have planned…

  • Writing the school newsletter
  • Doing some cooking, especially baking muffins and breads
  • Organizing and decluttering my house
  • Using those awesome gift cards my coworkers gave me
  • Taking some trips to Florida to visit my sister 🙂 🙂

 

 

Retirement December 5, 2013

Filed under: Uncategorized — onbeyondcancer @ 11:05 am
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Good morning!  Sorry I’ve been a bit busy lately and haven’t had a chance to post much.  I had chemo and a doctor visit yesterday; everything went fine.  We are still working out the details of the genomic testing, but more about that another time.

In October I decided to apply for disability retirement.  I’m part of a pension system at work that will pay me a portion of my salary as well as allow us to keep our health benefits for a reasonable, non-COBRA rate.  Please don’t be alarmed – nothing has drastically changed for me healthwise.  Technically, I’ve been “disabled” since my stage 4 diagnosis in April 2012, but I’ve continued to work because I like to and it keeps my mind active and busy.  I also wasn’t sure how we would get health insurance.

Since my stage 4 diagnosis, I’ve had  a number of little health issues come up.  Each one taken separately is no big deal, but they add up to be a bit challenging.  For example, I sometimes have trouble getting my thoughts together and I am completely unable to focus with any background noise or conversations.  Probably I’m the only one who notices.  Also the 2nd round of radiation seems to have caused some permanent damage to the muscles around my right hip, so I have to use my arms to lift up my leg to do things like put on my sock or get in the driver’s side of the car.    I’ve mostly adjusted to these kinds of things, but the start of IV chemo brought on new challenges of fatigue and a poorly functioning immune system.  I started to feel like I was pushing myself too hard and not having much energy left over to devote to the kids.  All of these things together led me to start seriously looking into disability retirement.

I made some calls and did some online research and Mike crunched the numbers on our finances.  I learned that the four of us could keep our health insurance by paying a small portion of my pension check, so my retirement wouldn’t be a problem for us financially.  That was a huge relief.  But I really decided to go forward with it when I read that the approval process could take up to 8 months!  Yikes!

I put in my application expecting I would keep working until next summer, but somehow the paperwork went through quickly.  This is the state government we are talking about here, so I was shocked.  Anyhow, I’ll get a final answer next week, and if all goes well my last day of work will be January 30.

 

Talking with kids about cancer November 26, 2013

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Living Beyond Breast Cancer is an organization that provides information and resources to women with breast cancer.  One of its features is a monthly “ask the expert” column.  November’s topic was talking with children about cancer.  I submitted questions to the expert and my questions were chosen to be answered.  You can check it out here: November 2013 Ask the Expert: Talking With Children About Breast Cancer.

 

Steeplechase 5K – still time to sign up September 23, 2013

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The Steeplechase 5K Walk is this Sunday, September 29 in Hillsborough, NJ.  The weather is supposed to be sunny and in the high 70s.  There is still time to join our team for the walk. Register today to save $3.

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Here are the details.

Location: Amsterdam School, 301 Amsterdam Drive, Hillsborough, NJ 08844.  Click here for directions.

Time: 9:30AM

Length: 5K, with options for 1 mile or 2 mile “shortcuts”.  You can decide during the walk whether you want to take the shortcut.

Entry Fees: $27 if you register today (Sept 23), $30 beginning tomorrow.  You can register the morning of the walk if you wish.

What you get: A short sleeve t-shirt, goodie bag, water breaks during the walk, and post-walk refreshments

CLICK HERE to register online.  Please let me know if you register and I will add you to our team roster.

 

Kids Sprints for children ages 2-11 start at 10:30AM and the registration fee is $8.  Kids receive a shirt and prize.

There is also a 5K and 10K run for those who might be interested.

 

Thanks very much to those who have donated.  Our team has raised $250 and Ethan is super excited to be in the top ten of individual fundraisers for the entire event.

 

My hair on Halaven August 30, 2013

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Who remembers the 1980s public service announcements for drug prevention where they fried the egg?  This is your brain…this is your brain on drugs.  Haha.  So my hair on Halaven is something like that.

 

You may remember that I decided to get a buzz cut during my second cycle.  Since then, my hair has continued to fall out, but slowly.  Most of the shedding happens a couple of days after an infusion.  At this point I have about 25% of my hair left, distributed quite evenly.  The remaining hair does seem to be growing too, so Mike buzzed it again for me to 1/4 inch. It’s a bit less shocking for the kids since I do have “some” hair still left; better than being bald entirely. I’m also quite thankful to have eyebrows and eyelashes.  Halaven hair loss has been quite different than my previous chemo related hair loss with the Taxotere, Adriamycin, and Cytoxan combo.

 

Cancer freebies from Sharsharet August 21, 2013

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I recently came across an organization called Sharsharet, that has some excellent resources for women with breast cancer.  The organization has a specific focus on Jewish women, a subset of whom have much higher than average risk for breast cancer, but they provide services to all women.  I spoke with a social worker who asked some basic questions, created a custom packet of information and useful items for us, and then offered to provide over the phone counseling if I needed someone to talk to.  A few days later we received this in the mail:

 

A “busy box” filled with toys, puzzles, and craft items so the kids have something to do when I’m not feeling my best.  Ethan really likes the Lunar Lockout logic game.

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A beautiful children’s book for kids who have a parent with cancer.

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A resource packet with various brochures and DVDs, specifically geared to young women with small children, with pamplets for my mom and husband too.

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A makeup kit that included eyebrow stencils (pretty cool if you need them).

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