One Year

365 days ago I heard the news I had cancer.

A LOT has happened in 365 days.

Over 200 of them were spent actively treating this disease.  I have had things done to me I never thought would happen (outside of chemo and radiation).

My whole world turned upside down and inside out for an entire year.

I discovered what wonderful people exist in the world — in particular my world.

I learned two important things —

Everyone is going through something

Someone has it worse than you

I know that without so many people caring, praying and helping out, I wouldn’t be here today.  There aren’t enough words in the world to say thank you to EVERYONE who is part of my life –my family’s life — during this time.

Thank you to Hubby Sammy and my two wonderful girls Kate and Ally for helping me keep it all together.  No little girls should know so much about chemo cycles, maintenance medications, surgical drains and radiation appointment protocol.

Let’s update my situation.

I finished radiation at the end of June.  I spent a month or so in physical therapy working on my arm motion post surgeries.

The first two weeks of August brought a welcome vacation to Disney.  We had some relaxing days, a cruise on the Disney Dream and a week in the parks.

We came home and school is starting – Ally in full-day kindergarten and Kate starting 4th.  Both girls are doing well and enjoying their classes.

I am currently on some maintenance drugs and have some check up appointments at the end of the month.  I will be seeing radiation oncologist and oncologist and pulmonologist.

jenn summer dress

My hair is still short and curly.  This is a shot on vacation.  The hair is just short and curly.  I totally feel like Screech from Saved by the bell.

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Everyone I say this to says “No you don’t look like him.”  But yes, I do!!  Halloween costume right here folks!!!

Anyway – I have felt like I’m in a strange limbo place.  I mean – I have been actively treating this thing for so long and I’m kind of lost because I don’t know what happens now.  I am sure I’ll figure it all out at my check ups but from the end of PT up to now I feel a little lost.

I will be scheduling my ovary removal for later this year.  That should be the last major item on my prevention schedule.

In October – I will participate in a Making Strides Against Breast Cancer event on the team of a dear friend of mine Karen.  If you are interested in joining my team or donating to the American Cancer Society, you can go to this site:

http://main.acsevents.org/site/TR?fr_id=55794&pg=personal&px=34733969

I will have more information about it.  It’s important.  If there are ways to help make sure others don’t have to go through this, let’s do it!!!

Now that my cancer-ful life seems to be cancer-less….I will be posting only when stuff happens – which is a GOOD thing!!!

I’m back to coaching at Phenom Gymnastics.  My endurance is realllllllllly low so it’s been a rough adjustment, but I’m glad to be back.  I’m also pursuing my career as a travel advisor specializing in Disney vacations.  If you’re thinking of going to Disney, or know someone who is, please think of me!  My services are FREE!!

Have a great September!

 

This entry was posted on September 7, 2013. 2 Comments

Happy August – uh what happened to July?

I owe you all a mega apology!

I had a phone call yesterday from a person I know with the exact same cancer as me.  She is almost done with chemo!!  She was doing some research about surgical options and refers to my blog for some information.  While I was talking to her she said:

“One reason I wanted to talk to you was that you hadn’t posted anything in a while and I wondered how you were doing.”

I apologize for keeping everyone in the dark!

I am not sure what happened to the month of July.

  • The girls had an intensive dance camp for a week
  • We watched 4 doggies for our friends for a week (2 golden retrievers, 1 border collie and 1 basenji)
  • I subbed for a vacationing gymnastics coach during the hottest week of the year in the gym with no A/C
  • Our own A/C died during the hottest day of the year requiring the purchase and installation of a new unit
  • The girls had Kids Camp at church
  • Kate had a mystery fever that just lingered on and on that kept me on my toes watching her
  • Hubby Sammy had his birthday

Yeah… THAT’S what happened to July!!

Let’s add a few other medical updates:

Radiation Recovery –

My skin is almost completely back to normal.  You can still see a light outline of the treatment area.  It just looks like strange tan lines.  The peeling is almost finished.  My energy level is good.

Physical Therapy –

I had a check in Tuesday and everything looks great!  I was a complete slacker though because I was supposed to get my compression sleeve ordered and in by the return visit.  I didn’t get to it (see above list of July activities).

Let’s talk about Ovary removal!!!  Just what everyone wants to know right?

I did hear back from Gynecologist Dr. Morris.

“I’m surprised I’m saying this, but I think you should have them out.” he says.

We talked at length about the situation.  When it comes down to it, I haven’t officially hit menopause (more on that in a minute) and it could be 20 more years before that happens.  Is it worth sitting around for that time with ovaries pumping out estrogen and wondering if cancer could come back?  Or would it be better to know that by removing them, I’m eliminating a potential source for further cancer?

The bottom line, the side effects of having the ovaries out can be dealt with as they come versus having cancer come back.

We will be doing this procedure in the cooler months since hot flashes can ensue so we might as well make good use of hot flashes!

Speaking of hot flashes – mine have disappeared thanks to daily doses of Gabapentin!

Medicines I currently take:

  • Tamoxifen – to stop cancer from coming/spreading/invading
  • Aspirin – a low dose daily.  There was a study done that taking one low dose aspirin actually reduced beast cancer rates.
  • Gabapentin – an epilepsy drug that stops hot flashes and helps me fall asleep at night

Let’s see…..oh yes… HAIR

screech

See this picture?  It’s Screech from Saved by the Bell.  It’s what my hair looks like right now!  I say this and people very kindly laugh and say “No, it’s so cute!!!”  But they are thinking “Oh my god that’s EXACTLY what she looks like!! I’m so glad it’s not me.”

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You see it don’t you?  It’s ok.  I know.

I’m sporting 6 months of growth and it’s extremely curly.  I think there’s about 2 inches in length but it is all curl so it’s more of an afro.  If I use my conditioner, the curls tighten up and don’t frizz.  No conditioner and I have quite the dome of hair!

 

 

 

 

 

One more thing – Tamoxifen

 

 

 

 

 

 

 

 

 

 

 

 

Weekly Recap June 24 – 28

Last week of radiation!

Monday highlights –

IMG_4612This is what I do every day.

The blue thing is the “mold” that holds me in place.

The attachment is for this week only while I experience the “boost” portion of treatment.

Jessica purposely moved the table into the exact location for the photo.  This is how close the machine comes to me while I’m getting treatment.

When I was having the entire area treated, that long contraption wasn’t on the machine.

 

 

 

 

I get onto this blue thing with the sheet covering it and get into position.  The radiation techs adjust me into exactly the right place using everything from minute tattoos, transparency films, Sharpie markers and some specs that are in their computer system.

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Here is a close up of the attachment for the boost.  Research has shown that if the cancer comes back, the first place it shows up is along the scarline on my beast from the mastectomy.  So the radiation treatment includes a “boost” of radiation to JUST the scarline.

Tuesday highlights – met with Radiation Oncologist Dr. Lingareddy.  Great meeting.  She was very happy with the results of the treatment.  My skin (while has taken a beating) is holding up well compared to others.  Getting the reconstruction BEFORE radiation worked in my favor.

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It was also the last “Treat Tuesday.”  I thought thank you cookies were appropriate to hand out to everyone who has been so wonderful during this process!  Don’t forget – Cupcake Moms – they make delicious sugar cookies like these and such gorgeous cupcakes!

I also headed to Physical Therapy with the awesome Carrie Pace.  She did some manipulation of my arm and of my lymph system.  We also added some exercises to my regimen.  Easy stuff but at a slow, light pace to ease back into things.

WEDNESDAY

Today I met with my girlie doctor about getting my ovaries out.  It’s called an oophorectomy.  My Oncologist Dr. Hantel was pretty adament about having this procedure done as a way to cut down on estrogen production.

Well – Girlie Dr Morris had lots to say about this.  This is NOT a cut and dry issue.  On the surface it makes sense right?  My cancer likes estrogen, so let’s cut out sources of estrogen.  It’s not quite that simple.  Girlie Dr. Morris used the following example:

You have something wrong with you and your doctor suggests cutting off your right arm.  So you do it — and it saves your life — but now you don’t have a right arm — for the rest of your life.  That’s what is going on here.  There are LOTS of reasons to do this and LOTS of reasons not to.

If my genetic testing came back positive for the BRCA1 or 2 mutations, then this is easy – have it done (Angelina Jolie’s world).

BUT – my genetic testing came back negative!

Here’s the craziness involved with a woman under the age of 45 having an oophorectomy:

  • 12% higher chance of suffering a premature death from something else than my beast cancer
  • Double the risk of cardiovascular disease
  • Double the risk of suffering from dimensia
  • Double the risk of getting Parkinson’s Disease
  • Increased risk of osteoperosis, strokes, lung cancer and psychological issues

SOOOOOOO –Girlie Dr Morris made a request.  “Can I think about it and call you with my suggestion?”  I totally appreciate that!

I will let you know when I have an answer from him and then I’ll work this out!

THURSDAY

Another day of radiation.  Almost at the end!!

FRIDAY

Physical therapy was in the morning and things were really tight so we took it easy.  My skin is just really painful and PEELING like there is no tomorrow.

Physical Therapist Carrie Pace couldn’t believe I could still wear a bra.  I explained that it HURTS like crazy but I wear one out.  She said to dump it.  SO as of today – my new set is just winging it!

Last day of Radiation!

I got a card for everyone and brought in a different treat since I did cookies on Tuesday.  I got everyone packs of fruity gum for their enjoyment!!!

When I got in the changing area, one of my radiation buddies was there for her last treatment too and showed me her certificate of completion – just like Joan’s from a while ago!

I went in and did my thing.  I got hugs from everyone.  I said good byes.  I didn’t get a certificate.  I know it’s not a big deal, but for 6 weeks of daily treatments with weekly cookie gifts and complete compliance during treatments, I wanted a certificate!!!

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This part of my treatment is over!

I have a check up with Radiation Oncologist Dr. Lingareddy and Oncologist Dr. Hantel in September!

Friday the 21st of June

Friday is the end of a week and it’s another end – the end of the FULL radiation treatments!

During the last how many weeks I’ve been at this, I have had radiation done to my chest and surrounding areas to kill off any lingering cancer cells that were missed by chemo and surgery.  These treatments are done in three separate zones during my time on the table.

The following is a yucky photo of what the radiation has been doing to my skin.  

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This photo is my underarm.  I’ve lifted my arm up so you can see the toll the radiation has taken on the skin.  There is a redness that looks like a sunburn and that is peeling skin you see.  The dark areas are from a medicated cream I use.  It has made my skin very dark wherever the cream touches. 

I tried taking a front shot but I can’t get a good photo that shows the rectangle shape of the radiation area AND maintain the modesty of not flashing you my beast at the same time.  I considered a bikini top but even then you won’t get the full effect of the shape of the area which is why I’d do a front shot.

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This is a photo I found that shows the area that I’m talking about.  That whole green area is currently red like a sunburn.

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This poor shot of my front side does show one area that is damaged.  Near the top of the photo (yes, I covered myself with strips of toilet paper attached with a band aid.  It was handy).  As I was saying, near the top of the photo you can see that darkened area?

That part of my skin blistered and popped and has looked like that for a few weeks now.  I put the medicated cream on that too so my skin has darkened there.

That’s the yucky side of radiation.

The best part – I’m DONE with this part of radiation!!!!!

I have 5 more treatments!!!!  These treatments are called “boost” and they are directed at the scar on my beast only.  My skin can now heal without getting shot down every day!!!!

 

June 20

As I walked up to the Cancer Center today, I saw a Joan sitting on the bench outside.

Joan is currently fighting lung cancer and has a complex treatment regimen.  I’ve seen her at 10:45 for my check in and she’s already been there for three hours having chemo and other things.

Two weeks ago I saw her leaving as I was coming in.  She was pulling out of the drive in a convertible – top down!  “It’s my gandma-mobile” she said as she waved.

Like I said, I saw her sitting outside today and I sat down next to her for a moment.  She handed me a piece of paper.  It was a certificate signed by all the treatment staff saying she has finished radiation!!  YAY!!!  I LOVE celebration days!  It feels like there’s another winner in this fight!

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So today – regardless of the challenges you’re facing, know that Cancer took a kick in the ass today!!!!

After radiation, I headed off to Physical Therapy with Kerry.  We do flexibility work and some massage.  I’m a little sore but it’s all for the best because I will have a strong lymphatic system and broken down scar tissue and excellent range of motion.

This entry was posted on June 20, 2013. 6 Comments

June 19

I’m writing again!!!

These were my cookies from last week’s Treat Tuesday!!  Cupcake Moms went preppy!!  Super cute!

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Yesterday I had a consult with Kerry the physical therapist.  She had some great information on lymphodema.  She checked out my physical progress and things look good.  Because I’m still going through radiation, she wasn’t going to do a LOT of poking and prodding.

She showed me some range of motion activities to work on.  There is some tightness at the end of the range which I knew.

She also reiterated that my skin is looking great relative to my stage of treatment.  I’m glad for that but boy does it hurt!!

Yesterday was Treat Tuesday and we went with my theme of annoyingly positive….

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Sadly Jodi told me today that she was going to share hers but her son ate the entire thing!!  I’ll have to make sure she gets two next week!

The end is in sight.  Next Friday is my last official radiation treatment.

Today I had my last FULL treatment.  The last seven treatments are called “boosts.”  The radiation thus far has been targeted to my beast, my lymph nodes and a bit of the chest area.  There are three main sections of treatments when I’m on the table.  During the boost section, the radiation will be aimed at my scar on the beast.  IF the cancer comes back, it usually starts at the scar point.

In other news, I taught a gymnastics class today – the first one since my surgeries!!!  It felt good to be back in the gym again!

I also was touring my local Hallmark store recently and saw these cards….

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Seriously – there are Chemo cards!!!

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I was surprised too!

Have a GREAT day!!!

Weekly recap June 10-14

I know I have been so bad about writing.

The whole Groundhog Day aspect of radiation is really making it hard to come up with something to talk about!

My skin –

It is starting to show wear and tear from the radiation treatments.  The area being radiated is a rectangular shape covering my beast and even over my shoulder to my back a bit.

It looks like I have a nasty sunburn.  I have two spots that aren’t happy.  One is high on my chest – there is a blister that broke and is tender.  My underarm is raw from the burns and the fact that the skin rubs against skin there.

Tuesday I got some medicated cream to apply to these areas.

I apply Aloe during the day all over the area.

I apply Aquaphor at night all over the area.

I apply the medicated cream twice a day.

This week we had a couple of extra film sessions because of the way things have been looking.  They are really really good at keeping tabs on my progress.

The films are x-rays that check how the heart, lungs and other tissues are holding up.

My goal each day is to try to get into the perfect position for treatment.  There is usually some kind of sliding required.

The fatigue is setting in.  I just find that I have the ambition to do things but the energy isn’t there to get the things done.  I really dislike feeling tired.  Have you noticed I am a DO-ER???  I DO things….sigh.  Being tired really makes it hard to DO what I want!!!

The end is in sight!!!!

June 10 Hair Update

It is 5 months since my last chemo treatment and here’s where we are in terms of my hair growth.

It’s definitely curly.

This entry was posted on June 10, 2013. 3 Comments

The Week of June 3-7

I have been absent from here this past week.  I’m not sure where my day time hours go.  It seems like one minute it’s 9:00 am and the next thing I know it’s time for bed.  Sadly, the blog suffers from absentee landlord syndrome.

On the other hand, that can be good because it pretty much means that things must be going along well or else I’d have things to write about!

ghog2Actually, it’s more like this.

Remember this movie?  Groundhog Day?

Here’s a quick rundown.  The film came out in 1993, starred Bill Murray and Andie MacDowell.  Phil Conners (Murray) is a news reporter sent out to cover Groundhog Day.

Phil isn’t exactly a likable character and the film shows that for him to make a change in his life, he is doomed to relive the same day over and over and over again.

 

 

 

 

 

Every morning he is awakened at 6:00 am to the clock radio playing “I’ve Got You Babe” by Sonny and Cher.

ghog3

In my version, every morning I arrive at 10:45 to the Cancer Center to change into my half gown.

I put my things into a locker and sit in the chairs to be called back for my treatment.

I go in and settle into my mold while the super sweet techs adjust me.  Every day I try to hit the mark perfectly, but there are always adjustments to make.

Sometimes there is a pull to the right.

Sometimes I have to scoot up a touch.

The gel-like bolus gets placed on my chest and the first set of scans begin.

Second set requires a moving of the bolus more on my side.  The machine rotates around and starts another set of scans.  The table also gets shifted to an angle.

The bolus is then removed and the machine moves back to the top position.  The table is straightened and shifted down a bit.  The last scans are a top and side.

Then I am finished.  Back to changing room and home I go.

On Tuesdays, I meet with Nurse Cecilia and Radiation Oncologist Dr. Lingareddy.

On Thursdays, I go through the same scans but there is video recording that goes on which just makes time on the table a little bit longer.

This particular week, Dr. was attending her son’s 8th grade graduation so I met with a partner on Thursday instead.

My skin is starting to show some wear.  It looks like a sunburn in a rectangular patch from my collar bone, down my sternum, right under my beast and along my ribs on the side.  I’m starting to feel tired.

The best news is that while Phil Conners was caught in a loop that lasted YEARS, I’m half way through treatment!

 

 

 

 

This entry was posted on June 7, 2013. 1 Comment

The rest of May!

Outside of Radiation appointments, I had a to do list a mile long so there were a lot of errands run.

I had a few Disney calls on Wednesday that kept me happily busy.  In the middle of one, I had to go out to my freezer in the garage to grab some food for Kate.  As I took the two short steps down to the garage level, I completely wiped out, dropping the phone mid-call.

Because I was on a call, I couldn’t exactly cry the way I wanted to so I sucked it up and finished.

I basically broke my third and fourth toes on my right foot!!  Why not, right?

I tried to set up my Occupational Therapy appointment but the office I use close to home isn’t where the specialist is located.  So I will have to make some phone calls and go from there.

Friday radiation I got the news that Ingrid – my daily nurse of awesome – is moving to the Plainfield center for the month of June so I won’t see her anymore!!!  This happens on a schedule but it was sad because I won’t see her anymore.

Also – Ally has become my radiation helper.  When we go in for treatment, she grabs me a gown from the bin and sets it up in the changing area for me.  She holds my key while I’m gone and helps me get put back together.  What a kid!

We did film day on Thursday so that appointment is like 5 minutes longer than usual.  Everything is still going well.  I’m not too irritated by the radiation yet.  Light, light pink on my skin.