On Beyond Cancer

My life with metastatic breast cancer

New wig July 31, 2013

Filed under: Uncategorized — onbeyondcancer @ 10:38 pm

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Here is a picture of my new wig.  I settled on Allure.  It was just way more comfortable.  I plan on taking it to a hairdresser that specializes in cutting wigs to see if she can trim it a little.  I think the style could use a little modernizing.  But it fits a lot better than my old one.  I also got the baseball cap wig, it is really pretty.  Will try to post a pic of that one tomorrow.  Busy day, heading to bed.

 

Chemo, 2nd cycle 2nd dose

Filed under: Uncategorized — onbeyondcancer @ 12:31 pm
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Just getting started with chemo.  Feeling fine.  My Aunt Cindy is here with me today and Uncle Joe and my mom are watching the boys.  After I finish up with chemo, I’m going to pick up my wig.

We’ve had some excitement at home yesterday and today.  Yesterday afternoon a baby parakeet flew into the yard.  Ethan really wanted to keep it, but we called animal control to come get it.   Checkout Facebook if you want to see a picture.  Then last night I accidentally washed one of Ryan’s pull up disposable training pants.  The entire washer was full of sticky goo.  So my aunt and I spent a good half hour cleaning up the mess this morning.  Wow.  Sitting here at chemo is like taking a rest!

 

Buzz cut July 28, 2013

Filed under: Uncategorized — onbeyondcancer @ 6:42 pm
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Today we cut my hair.  We started with a scissor trim, then buzzed it to about half an inch.  The boys were really excited to use the buzzer.  Mike and boys got haircuts too.

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Mike did a quick scissor cut.

 

I saved three small ponytails - one for Mike and one for each of the boys.

I saved three small ponytails – one for Mike and one for each of the boys.

Here is Ethan, concentrating really hard on cutting my hair.

Here is Ethan, concentrating really hard on cutting my hair.

 

Final result.

Final result.

 

 

 

 

Definitely losing all of my hair July 27, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:39 pm
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So today I lost more hair than I have on any day so far. Most of it falls it in the shower after I shampoo, but it also comes out throughout the day on my clothes, in my food, all over the floor, etc. Poor Ryan got a few strands in his blueberries the other day. It’s thin enough now that you can see through to my scalp, though oddly there are still no bald spots. Tomorrow I plan on cutting it short and then shaving it off. Ethan is ready to cut it for me and plans on giving me a mohawk.

 

I feel a little anxious about not having hair because it’s such an obvious physical sign that something is wrong. So far I’ve been able to make the decision whether I want to tell people that I have cancer, and if I don’t tell them they probably wouldn’t know. The last time I lost my hair I was home most of the time. I was pretty sick from the more intensive chemo regimen and I was on maternity leave taking care of Ryan. When I did go out, I often struggled with how to cover my head. It was just one more part of my outfit to put together. This time around I feel like I have a better plan with a few easy options, so I’m hoping that won’t stress me out quite so much. 

 

With any luck my new wig and hat will be in this week. I also ordered some bangs, just to frame my face under a scarf or hat. I really wanted to get these neat bangs on a headband from a company my friend Candi recommended, but headbands are usually uncomfortable for me. So instead I opted for these in a dark brown:

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Public service announcement July 25, 2013

Filed under: Uncategorized — onbeyondcancer @ 12:41 pm
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Hi there.  I am just a little tired today, but feeling pretty good.  Cheryl and I had lots of fun yesterday at chemo.  We’ll just pretend we were hanging out at Starbucks.  It was nice to go in the afternoon because it was much less crowded.  Usually when you bring someone with you they have to sit in a folding chair, but yesterday there were plenty of the chemo recliners available.   I made a nice comfort food dinner last night – pastina and pea soup with fresh French bread.  The kids gobbled it up too.  I did go to bed a little early.

As for my public service announcement, I wanted to let you know that in the past few weeks I have received medical bills in the mail for almost $2000.  The bills came from two different hospitals and a dentists office.  We have very good insurance and all three of the providers were in network.  Two of them had already received payments from the insurance company, but tried to bill me for the remainder.  This is illegal.  In both cases the insurance company had to send them a letter telling them that they were not allowed to bill me.  As part of their contract they have negotiated rates and have agreed to accept a certain amount.  The dentist’s office had not yet received payment from the insurance company, but in addition to resubmitting the bill to them, they sent it to me.  I obviously have a lot of medical treatments, but in the past I’ve rarely had this experience.  So if you get a bill like this DO NOT pay it.  Call the provider’s financial services department and the insurance company and let them work it out.  Beware of providers who try to claim that you owe money for a copay, coinsurance, or deductible.  Always check with the insurance company before paying a bill like this.

 

Halaven, 2nd cycle, 1st dose July 24, 2013

Filed under: Uncategorized — onbeyondcancer @ 2:16 pm
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Chemo today.  Feeling pretty good.  My appointment was in the afternoon, so I ran some errands this morning.  Today my friend Cheryl is my chemo buddy, so we are going to have lots of fun.  My counts are good.  I had blood work today including tumor markers.  My doctor said they may show a change or it may be too soon.  I’m also getting Xgeva.

I still have hair but it gets a little thinner every day.  I told Ethan he can cut my hair if I need to shave it and be seemed excited about it.   I think he couldn’t believe I would let him do it.

 

Save the date July 20, 2013

Filed under: Uncategorized — onbeyondcancer @ 4:23 pm
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Save the date for this year’s Steeplechase Distance Run/Walk, Sunday, September 29 in Hillsborough, NJ to benefit Steeplechase Cancer Center.  This year there will be options for a 5K run or walk, 2 mile walk, 10K run, and kids sprints.  I’ll be walking in the 5K which starts at 9:30AM.  The cost to register in advance is $27.  You can click here to register.

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Losing my hair July 19, 2013

Filed under: Uncategorized — onbeyondcancer @ 9:35 pm
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Wednesday night I started losing my hair.  Not too much has fallen out yet, you can’t tell.  No large clumps or bald spots yet.  So I’m not sure whether it is just thinning, getting ready to fall out completely, or if I’m going to go bald in a painfully slow way.  For the moment I’m going to wait and see, not cutting it yet.  But I did go to my local wig boutique today to look for some new options.  The wigs are covered at 90%, up to $500 by my health insurance.  Most synthetic wigs (made from plastic, instead of human hair) are between $100 and $300.  Human hair wigs are more expensive (and probably more realistic), but they are also harder to care for.  Here’s my old wig, hard to see in the photo but it is a brown with reddish highlights:

Wearing my old wig at Sara's wedding.

Wearing my old wig at Sara’s wedding.

My old wig is still in good condition, but I wanted to get a shorter one that doesn’t touch my face (the hair is made of plastic) and also a baseball cap with hair attached.  So I’m thinking about one of these two, in brown of course, not blond:

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“Allure”

"Tyler"

“Tyler”

The wig shop manager ordered both for me in brown so I can try them on.  I tried on “Tyler” in blond, but “Allure” was one I picked from a catalog.

This baseball cap style has the hair attached along the edges, but no hair on the top of the head, so it is much cooler and easier to wear.  I’ll mostly be wearing this on my “mom days”.  I thought the kids might feel more comfortable with this instead of a bandanna or something like that when I pick them up from school.  I picked a longer length so I can put it in a ponytail or a braid:

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Now that I spent time choosing all these, I won’t need them, but I feel better that it’s done.

 

Sweet artwork from my nieces and nephew July 15, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:00 pm

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Came home from work today to find these lovely collages from my nieces and nephews.  Also nice notes from my sister-in-law and my oldest niece (who wrote hers in perfect cursive).  Great way to end the Monday workday.

I have been feeling really good this week.  Mostly normal or what is normal for me.  Haha.  This is my off week, so I get a little break from chemo.   No changes in my hair yet. Tomorrow is day 14 of the cycle though which is when my doctor said hair loss might start if it is going to.

 

Calendar girl July 10, 2013

Filed under: Uncategorized — onbeyondcancer @ 7:35 pm
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So my unpaid cancer model career continues… You probably have already seen the Steeplechase Cancer Center ad and the accompanying youtube video.  Before that I was in a fashion show benefit for the cancer center.  Today I received a call from an organization called Hair to Share.  They provide free wigs for New Jersey cancer patients who do not have health insurance that covers a wig.  One of their fundraisers is an annual calendar and they have asked me to be in the 2014 calendar.  Two of my friends will be in the calendar as well.  The makeover and photo shoot will be in mid September.  I told the woman who called that I would love to participate but may or may not have hair in September.  She says that doesn’t matter; all of the models will be wearing wigs for the photo shoot regardless of whether they have hair or not.  The calendar has a theme each year and they are still working on the details of that.  You can see photos of the 2012 and 2013 calendars here.  This should be really fun.  It was kind of a nice pick-me-up since I’m a little stressed about my hair this week.  My sister says she is going to buy the calendar and hang it up at work, keeping it on whatever month I’m on all year long.  Hahaha.

 

I finished up today’s chemo at around 1:30 and then had a quick checkup with the radiation oncologist.  He said my hip seems fine (which I already knew) and told me to take care and please stay out of the radiation department in the future.  🙂  It was my third time getting radiation, so can’t say I blame him.  My medical chart is about 4 inches thick.  I kind of feel bad for the secretaries who have to carry and file the thing.

 

I’m feeling fine so far.  Mike isn’t feeling so great, though – he’s got chills and a headache.  I think maybe he is just such a wonderful husband that he’s taking my side effects for me.   😉