Update

It’s almost Sunday.  The family and Mommy and I are heading out to the Making Strides Beast Cancer walk.  It’s going to be cold which I hate but it should be interesting to see what these walks are like.  Thanks to all of you, I raised almost $500 toward beast cancer research, detection and treatment.

Next week I’m having the FINAL procedure in my treatment journey.  My ovaries are coming out on Tuesday.

Last Friday I had a whirlwind afternoon of pre-op appointments.

I headed out to Good Samaritan Hospital.  I got a packet of info to take to the registration desk.  My favorite part was the section listing my “complaint” as “FEMAILE BREAST CANCER.”  I wondered if I needed a stamp or should be at the post office or what.  Turns out I need some blood work and a chest x-ray.

If you’ll recall, I hate blood work and the longer I wait the more stressed I get.  Finally I get called in and it hurts.  And the room gets really warm.  And it takes longer than I like.  And I’m sweaty.  The lab tech says she isn’t sure if there is enough blood in the second vial.  She asks me to come back after my x-ray to check.

I head to x-ray and wait there for a while.  Chest x-rays are a piece of cake!  Stand, inhale, hold your breath for 10 seconds and done.

I return to blood work wondering how they will get more blood because I’m limited to my right side only.  After a few minutes, I am told everything is good and I don’t have to give more!  YAY!

I then head over to Dr. Casey Morris for my pre-op discussion.  The procedure should be simple.  Three small holes, ovaries and tubes come out, done in an hour.  I’ll be home and need to rest for the rest of the week.

In sadder news, I know of too many people who aren’t winning the fight against cancer.  If you know someone dealing with this disease — contact him/her.  Friendships and relationships are so important to people dealing with cancer.  Do you know someone caring for a cancer patient?  Reach out to them.  It goes a long way!

 

As of Tuesday afternoon I will be thrown into the depths of menopause.  Fingers crossed that I don’t go completely crazy.

It’s PINKtober again

Hi everyone,

It’s time for an update on life!

I might have mentioned that I was heading on a multi-doctor tour over the last few days.  I have some updates:

Dr. Sara Greenhill Pulmonologist – the sarcoid in my chest does not seem to be causing any issues or symptoms so I am good for another year before I have to see her.  I do have to schedule a breathing function test and an eye exam prior to next year’s appointment.

Dr. Jennifer Kurka Primary Care Physician – this is a new doctor on the board.  I have dumped the lousy primary doctor I had before who told me I didn’t have cancer and makes it very difficult for me to keep one of my prescriptions current.  I really like this doctor – definitely looking at the WHOLE person.  We talked about everything going on and she firmly suggested I get a flu shot and a tetanus shot.  I strongly objected but there I was getting the shots anyway.  All I’m going to say is that there better be a nasty flu this year that keeps away from me!  I also got to donate some blood to test my cholesterol and sugar levels.  By the way – they came back fine!

Dr. Lingareddy Radiation Oncologist – can I tell you how wonderful it is to see this woman?  She is ALWAYS upbeat and positive!  When surrounded by a lot of clinical stuff, it is nice to have one doctor that gives you a hug!  She is thrilled with my progress.  I still have some discoloration from the radiation area.  She said that if it doesn’t clear up in the next 6 months, she has a cream that will take care of it.  She loved the range of motion I have and explained that I am still healing from this so as long as I keep moving forward and keep it moving, things will progress perfectly.  I still have some tightness in the muscles around the beast and into my arm.  She needs to see me again in 6 months!

Dr. Hantel Oncologist – This was the best conversation in terms of the big picture.

ME: “So where are we at…what am I?”

HANTEL: “You’re cancer free.  Not cured.  But you are cancer free.”

BEST WORDS EVER!!!  WOO HOO!!!

We talked about the one thing left on the list of the cancer fight – getting the ovaries out.  This has been a long conversation and I did decide to have it done which makes Hantel happy.  He wants to see me again in 4 months.  AND it was time to schedule a mammogram for the right side only.  He explained that the left side isn’t a beast anymore.  He didn’t know what it is, but it isn’t a beast.  It’s funny because I still kind of consider it this foreign thing and I suppose it really is!

I stopped by the Beast Center to schedule my appointment and how about that – they can get me in that afternoon!  I return about 2:00 and get the right one taken care of.  Since there is an implant in there, they have to sort of move it out of the way to do the test.  It isn’t as bad as last year’s and I figure that the results can be nowhere near as bad as last year’s.  The results came back that the right side is clear!  YAY!!!

Dr. Casey Morris gynecologist.  It was time for my annual girly check up.  We talked about the ovary surgery and getting that on the schedule and moving forward.  October 22 at 7:30 in the morning.  All righty then!

The funny thing is that every one of these doctors are in a different place and Hantel remarked that I’m promiscuous with my care providers.  I responded that I liked to consider myself an equal opportunity patient who looks beyond affiliations!!!  ha ha ha ha.

And of course it’s PINKtober again.  There will be haters out there saying “Why does beast cancer get all the funding and attention?”  My response this year is that while beast cancer is the focus – the word CANCER is still there and I have to think that anyone who hasn’t been touched by this horrible disease has a glimpse into the cancer world this month.  I also have to believe that the research done will carry over into other cancers as well.

In the spirit of PINKtober, I am participating in an event sponsored by the American Cancer Society to support Beast Cancer research and prevention and all that good stuff!  If you would like to make a donation to my team, here is the link:

https://secure.acsevents.org/site/SPageServer/?pagename=MSABC_CY13_Donate_Landing

Hair update?

It is curly as ever.  Hantel explained this one.  If you have straight hair, the hair follicle itself is cylindrical.  Curly hair is flatter in its structure.  Chemo flattens out the hair follicle so almost everyone who loses their hair will have a period of curly hair until it grows out and the original shape hair returns.  This explains why some women have hair that returns different and then later goes back to normal.  Everyone say “AHHHHH”

FINALLY -

All my GIRL friends – if you need to schedule your mammogram DO IT!!!  If you are nervous to go get it done I WILL GO WITH YOU!!!  Just tell me when it is and I will be there (not in the testing room, your beasts are your own) but I will be in the waiting room with you for support!!!!

 

This entry was posted on October 3, 2013. 1 Comment

YOU are incredible people!

If you follow my crazy life on Facebook, you’ve noticed that for the past week I’ve been asking you for money!  There’s no sugar-coating here!!!

I am participating in a Making Strides event next month.  What is Making Strides?  Yeah, I’m a little fuzzy about it too.  The American Cancer Society sponsors these walking events throughout the country.  Here’s the big thing.  The money raised goes to research and testing and saving lives.  If my walking around a track a few miles can save some women from having to go through what I did last year, hell, sign me up….oh yeah…I did sign up!!!

So on October 20 I’ll be joining a few folks bright and early to walk around the Chicagoland Speedway to do my part.

Why are YOU incredible?  I’m getting there.

I set a fundraising goal of $294.  Why such an odd amount?  I was in treatment for 294 days so I figured I would raise $1 for every day of testing/chemo/surgery/recovery/surgery/recovery/radiation that I went through last year.

AND in ONE WEEK – I made my goal and a little bit more.  My first thought was that if all of my facebook friends gave $1, we’d be set.  But then you guys just came through – No one gave just $1.  You all are such thoughtful, giving people!!!

My thanks go out to:

Kristy, Jen and her family, Renee, Jenn, Brian, Karen and Laurie.  You guys did it!!!

Now, for those of you who are interested in contributing, I am not going to stop you!  I am an overachiever and I have 28 days until the event!  I’ll put the link to the page.  If I make it to $365 then I’m a member of the birthday club – don’t know what that means, but I’ll take bragging rights!!!

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

 

Over the next week I have check ins with just about every doctor so I should have some idea as to where I stand by the first of October.

Thank you again to my supporters for Making Strides AND during 294 days of treatment.

 

This entry was posted on September 22, 2013. 2 Comments

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.

screech

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.”

IMG_4675

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.

IMG_4611

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.

IMG_4610

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!!!

IMG_4609

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.  

IMG_4606

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.

rad

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.

IMG_4607

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!!!!