On Beyond Cancer

My life with metastatic breast cancer

Volunteering January 25, 2014

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I wrote last month about my retirement plans to do some volunteering at the Sanofi Aventis Wellness BoutiqueI talked to the boutique manager last week and she said that she would be making good use of my skills and planned to put me to work on the computer, helping with insurance reimbursements for wigs and prosthetics.  It seems that few hospital volunteers are computer savvy.

 

This week I called the volunteer office to find out what the process was.  I submitted my volunteer application online.  (Cheryl and Pam, if you are reading this – I listed you as references!)  Next week I have an interview and the following week an orientation.  Just like applying for a job.  So I should be able to get started in mid February.   I’ll be helping out on Thursday mornings.  Looking forward to it.

 

Calendars are here November 2, 2013

Filed under: Uncategorized — onbeyondcancer @ 10:59 am
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The Hair to Share calendars are in.  Each calendar is $20 and benefits cancer patients in NJ whose insurance does not cover the cost of a wig.  I’m Mrs. August and three of my friends from the Young Survivors support group are featured in the calendar as well.  If you have already told me you’d like a calendar, I will have one reserved for you.  Anyone else who is interested in purchasing one, let me know.

 

Tumor marker from last week is in October 27, 2013

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Dr. T ordered a tumor marker last week as a baseline since I just started Gemzar.  We have been so busy I actually forgot all about it.  Just checked it today and it is up 8 points, from 91 to 99.  That doesn’t really mean much.  I’m a bit worried about trusting the number at all since it was going down even with progression in my liver.  

 

Gemzar has been mild.  Just a bit of tiredness.  I felt well enough to take the kids mini golfing on Friday night, but we didn’t stay out too long.  

 

Looks like my hair is making a comeback.  The hair that I have is getting longer, but not really filling in yet.  So it will be scarves for another month or two.

 

A busy week coming up.  Treatment again on Wednesday and then assuming I’m feeling up to it, Wednesday evening I’m going to a dinner for the Hair to Share Foundation.  The calendars are ready for distribution!  I know a number of people are interested in getting one.  I’m not sure yet what the process will be, but I know I’ll have an update for you later this week.

 

Steeplechase 5K September 29, 2013

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Thanks to our walkers and contributors!  It was a beautiful day for a walk.  I made it about 1.25 miles and Ethan did the whole 5K with his friend, my mom, and my friend Cheryl.  My mom and I got mini massages from the sports medicine volunteers.

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Chemo – start of 4th cycle September 25, 2013

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Today was a chemo day.  My coworker Shawna came with me to my appointment and we were so busy chatting that I didn’t get a chance to write my post for the day.  Thanks Shawna!

 

I did have a doctor visit today.  Since I’ve been on Halaven for about three months, I’ll be getting a PET scan next week to see how the drug is working.  The decreasing tumor markers suggest that it is working well, but the scan is a definitive result.  On the plus side, I don’t have to drink anything nasty for the PET scan like the CT scan, but I do have to get an injection of radioactive sugar in my hand.  I really hate getting needles in my hand – it is the most painful spot. 

 

We talked a bit about my hip and the physical therapy.  I’ve been going to therapy for about three weeks now, twice a week.  The therapy itself makes me quite tired and we aren’t sure whether I have seen any benefit yet or whether I will get any benefit from it in the future.  For sure my range of motion is still quite limited; it’s really hard to put a sock on my left foot.  So Dr. T recommended I take a one week break from therapy to see if I notice any difference.  This Sunday I will be attempting to walk a mile for the Steeplechase 5K, so that will be a good test for me.  Let’s hope Mike doesn’t have to carry me back to the car.

 

My white blood cell count improved since last week as did my hemoglobin and hematocrit (which measure anemia).  So good news there.

 

I also had a surprise delivery yesterday while I was at work.  My friend Cheryl made me a baked potato dinner with broccoli, cheese, peppers, scallions, bacos (yes, they are vegetarian, check the label), and sour cream.  It was a perfect night-of-chemo dinner, nice and simple.  I’m not sure who enjoyed it more, me, or Mike because he didn’t have to cook.  Thanks Cheryl!

 

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.

 

Ms. August September 13, 2013

Filed under: Uncategorized — onbeyondcancer @ 10:24 am
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This weekend is the photo shoot for the Hair to Share calendar.  Three of my friends from the Young Women’s Cancer Support Group will also be featured in the calendar.  The theme for this year’s calendar is “Timeless and Beautiful” and all the models will be wearing black clothes and wigs.  My outfit is a black top and skirt and I’ll be Ms. August.  🙂  Hahaha. I hope to have a picture to share with you next week.

 

This week’s chemo infusion went well.  I opted not to get the steroids again, and I had no nausea afterward.  Next week I get a break – no chemo, just my Xgeva (bone shot).

 

My hip is still rather painful.  I’ve been going to physical therapy twice a week.  Each session is about an hour or so and includes a 5 min warmup on the exercise bike, 30 reps on the leg press machine, 5 or 6 different painful stretches, and then the therapist stretches my leg for me.  I have definitely been extra tired (and cranky) and realized that there is no way I can do 3 times a week.  Hard to say yet whether it is helping.  My hip/leg does feel better immediately afterward, but I’ve still been needing pain meds.  The pain is not intense, but it is constant and seems to sneak up on me.  After a month or so, I’ll talk with the doctor to reevaluate whether this is helping.

 

Peppermint & Ginger Comfort Kit August 27, 2013

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Another organization providing items to cancer patients, Peppermint and Ginger Comfort Kits, Inc., focuses on personal hygiene and oral health items.  They sent me this box of goodies.  So far I have been really enjoying the peppermint tea – it is great for mild nausea.  They also included a special alcohol-free mouthwash designed to help prevent mouth sores (listerine type mouthwashes are a bit too harsh).

 

Cancer freebies from Sharsharet August 21, 2013

Filed under: Uncategorized — onbeyondcancer @ 8:28 pm
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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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Walk with me on Sept 29 August 19, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:43 pm
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I’ll be walking in the Steeplechase Distance Run/Walk on Sunday, September 29 in Hillsborough, NJ to raise money for Steeplechase Cancer Center where I receive my treatment.  Last year’s walk was a lot of fun.  It’s a 5K walk with options for 5K or 10K run and kids sprints as well.  This year my son Ethan wants to walk the 5K too.  Walkers get a free t-shirt and snacks.  If you would like to join me, register to walk here (scroll down to bottom of the page) and then sign up for my team here.  If you have any trouble registering, please let me know.  If you’d like to make a donation to our team, you can do so here.

 

My mom, me, and my Aunt Cindy after the walk.

My mom, me, and my Aunt Cindy after last year’s walk.

Ethan and Ryan with their medals after the kids sprint.

Ethan and Ryan with their medals after the kids sprint.