On Beyond Cancer

My life with metastatic breast cancer

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!

 

Couples Retreat September 24, 2013

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Mike and I had the opportunity to attend a couples retreat this weekend for women with metastatic breast cancer and their husbands/partners.  The event was hosted by Johns Hopkins Breast Center and held at the Bon Secours Retreat Center in Marriottsville, Maryland.  It was free (sponsored by a foundation) and included meals and a room in the conference center.  There were 4 other couples at the retreat along with an oncologist, nurse navigators, psychologists, massage therapist, and a yoga instructor.

The weekend included chances to try massage, yoga, and meditation, but most of the time was focused on talking about how couples cope with this difficult disease.  It was very interactive and the participants were sharing struggles and ideas.  The things that came up in discussion were the type of things that you tend to “bottle up” because they are just too hard to think about.  It was great to have a room full of people who really have walked a mile in your shoes.  I was also happy (and sad) that there was another couple with young children at the retreat.  Everyone was really friendly and I give the husbands a lot of credit for even showing up.

One session was separate discussions for men and women.  I promised Mike that I wouldn’t nag him with questions about what was said in his session.  I’m sure that many of you know how hard that is for me to do! 🙂

An oncologist did a question and answer session and the five couples kept him talking for a full hour.  He was very knowledgeable about new research in breast cancer, especially around treatments involving genetics and vaccines, and was really great at explaining things clearly.

Sunday morning we had a chance to walk a labyrinth, which was a really interesting experience.  We were also able to fit in a quick visit with Mike’s brother and his family.

This group also has a conference for women with early stage breast cancer who have recently completed treatment.

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The grounds at Bon Secours are really beautiful. Here is the pond right outside our window.

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There were some huge fish in the pond!

 

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.

 

Hair to Share Photo Shoot September 15, 2013

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Here is a sneak peek from the Hair to Share photo shoot.  I took this photo myself, so obviously it’s not great.  I wore a long, brown curly wig that was pulled up and a lace back shirt. The photo for the calendar was a side view, looking into a mirror.  I also tried on a long blond wig which looked nice, but didn’t go with the idea they had in mind for the photo.  The calendar will be available in October or November for $20 with 100% of profits going to provide wigs to women in need.  More info when it becomes available.

 

New wig September 14, 2013

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Got this new wig at a local wig shop.  A bit longer and with more wave.  Thanks to Cheryl and Amanda for helping me pick it.

 

Ms. August September 13, 2013

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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.

 

Chemo today September 11, 2013

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Counts are good.  Trying chemo today by myself.  Getting a ride to and from.  Of course, I’m never by myself because there are a bunch of patients and four nurses in the chemo infusion room.  Today I happened to sit down next to a patient I met a few weeks ago.  We have been chatting and she gave me some tips on places where I can get free or super cheap wigs.  I’m enjoying a cup of tea and relaxing.  My first nausea drug is finished, just started the second one.

 

Halaven is working!!! TMs down September 5, 2013

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Lab results are in and my tumor marker dropped 40 points since last month, from 153 to 113.  This is good news and means the Halaven is working.

Had a bit of a rough day today with a headache and nausea.  Not sure if they are chemo related or if I got a bug from the kids.  Mike made me some soup tonight when he got home.  Hoping tomorrow will be a bit easier.

 

Chemo and first day of school September 4, 2013

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First day of school today for both boys.  Ryan was a little sad when we left but when grandma picked him up he said that he had fun and made some friends. 

Mike is with me today for chemo.  My counts are good.  Today I’ll get a blood test for tumor markers to see how well the Halaven is working.  We should get the result on Friday.  I had a tough time over the weekend with side effects from last week’s steroids, so we are going to hold off on the decadron today.  I had painful swelling all over my body, so I don’t want that again.

I also asked Dr. T about travelling and how we would handle my chemo schedule.  She said we could work around it, just delay treatment or I could get treatment while I’m away.  I might consider that when I visit my sister for the holidays.

Having a romantic PB&J picnic with my husband as I wait to get set up for chemo.