Week In Review: A Bit of Necrosis and the Oncologist

Our beautiful girls.

This was a week of some ups and downs.  My downs are usually short-lived, but man do I hit the floor at at times.  It's a good thing Tom is so very even-keeled.  It balances us out.  

The week started with a revisional President's Day day surgery procedure.  Unfortunately, some of the skin didn't "take," mainly along the incisions.  From what I've read, this happens approximately 10% of the time.  Our plastic surgeon, Dr. K, and a woman who's doing a fellowship at the U of MN in plastic surgery worked on each side of me simultaneously so it was over in a matter of 20-minutes or so.  In answer to all of your questions about whether I was nervous about having a newly minted plastic surgeon working on me.  Just a bit, but you gotta start somewhere, right?  

My incisions look so much better and less purple.  I think I'm going to have some wicked scars on my chest. Whenever I think of scars, I think of my good friends who loves scars because she thinks they make people look more interesting and they always have a story.  True.  I split my forehead open last May and ended up with a Harry Potter-like line in the middle of it. I just added that to the circular chicken pock scar on my forehead and the dog-bite scar on my cheek.  The line on my forehead has faded nicely, but it still serves as a reminder to me that beauty is in the eye of the beholder.  And if you don't find my scars beautiful, feel free to lie to me; I'm okay with that. 

On Thursday night, the night before we went to see the oncologist for the first time, we got the news that one of the mom's of a girl in Lark's class who had been treated for ovarian cancer in the past year and a half, is going in for surgery tomorrow to have cancer on her brain removed.  It really threw me for a loop.  It's funny how when I hear about cancer in friends I always think, "It's just not fair." And it pisses me off.  Ironically I don't feel that way about my bout with cancer.  The first thing I thought is, "What is this supposed to teach me?"  I still feel that way about our situation, but f- cancer for all of the other beautiful people who are effected by it.  Back to the mom from Lark's school, please send her and her family prayers for a good outcome and recovery.

I woke up on Friday with a heavy heart and allowed it fuel my mood for the day.  Our oncologist appointment was at 1pm.  When we walked into a large waiting room, I was struck by how many people there were waiting for appointments and also at how bleak it looked in there.  It was all florescent lighting, no natural light and decor that probably hadn't been updated since the 80's.  While we were waiting, Tom told me he could tell  I was sad by the way I was walking.  Darn it.  I wish I wasn't so transparent.   

We were eventually led back to an examine room where my someone took my vitals, we met with the oncologist's nurse, who was nice enough, and then the oncologist.  I don't know why I'm always surprised when we end up in a examine room.  I always picture in my head taking to a specialist, like an oncologist, across a desk.  I have no idea where that comes from.  Back to the meeting...the oncologist listened to my lungs and then examined my chest.  She said something like, "How long ago did you have your surgery?  Two weeks ago?  I would have expected you to be further along.  Are you a slow healer?"  I responded that I normally heal quickly and sited my recent head-wound as an example.  

Tom reminded her that I had just had some necrosis removed on both sides.  To which she responded something like, "Huh?  You're not a smoker.  I'd expect necrosis in a smoker."  Maybe that was her inner voice just coming out.  In any case, that's NOT what you want to hear when you're already in a bad mood and maybe just want some reassurance.  

Rather than tell the whole story as this is getting long, I'll just bullet point our takeaways:

• My prognosis hasn't changed and is still great!  One can lose sight of that when layering on additional information, such as looking at an actuarial table that gives me my 10-year chance of survival (90%).  
• Chemo therapy is still on the table.  I didn't realize that as I was under the impression from our surgeon that it would be hormone therapy only.  It's possible that I just heard what I wanted to hear.  The tumor will be tested to determine the chances that breast cancer will return (it usually comes back somewhere in ones core) and if I would benefit from chemotherapy to help prevent recurrence.  The test is the only one in the market and is called the Oncotype DX.  In two weeks we'll find out my recurrence score from 0-100.  0-18 is a low risk for recurrence so no chemo (50% of samples) and a score greater than 31 is considered high risk and there's a statistical benefit for chemo.  18 - 31 is the murky middle where you need to make a judgement call.  We'll get the results in 2-weeks.
• If chemo is in order, it will be Taxotere  Cytoxan.  We'll cross that bridge on knowing the details of it if we need to, but she did mention that it's a given that you'll lose your hair.  Here's to hoping that's that worst side effect. I read in another young woman's blog who underwent this therapy that her hair actually grew back thicker.  I've always wished that my baby fine hair has some more volume.  Be careful what you wish for. 
• I'm being tested for the breast cancer gene, or BRCA1 and BRCA2.  Having a secondary relative who's been diagnosed with cancer (one of my mom's sisters), my Norwegian heritage and my early age of diagnosis make me a candidate for this testing.  Only 5 - 10% of the population tests positively for these genes.  If you test positive, you have an increased risk of not only breast cancer, but other cancers such as ovarian cancer. Many women opt to have their ovaries removed to prevent that from happening.  Clearly it would also be important information to have for our family.  
• We want an oncologist who thinks about cancer as treating the entire family.  Certainly there's just one of who's physically effected, but we're all on this ride together and it matters that we have two children and the fact that this is Tom's second go around.  This oncologist gave a great cancer tutorial - it was like a good salesman going through their pitch - but she barely acknowledged Tom and seemed sort of removed from the situation.  I could detail some more gaffs on her part, but I'm going to spare you.  Suffice it to say we're going to look for a new oncologist.  

Back to the present.  I'm happy to say that my dauber is up again - at a 3.5 out of 5.  I am, however, getting a little stir crazy.  My energy level is back to where it was before surgery so I have to resist the urge to do to much.  Taking it easy is NOT my forte.  Fortunately, we have Sue, our mother in-law (i.e., Tom's late-wife's mom) here with us for the week to help me maintain my sanity. Thank you, Sue! 

I have another appointment tomorrow with the plastic surgeon where I think (and hope) I'll get the remaining drain out.  

Good thoughts,

Lisa

 

My New Holsters

Yup, I have some new holsters.  Not the kind you're thinking of.  These are some slick new covers I made for my drains so that I can look somewhat normal going out in public.  Tucking the drains under ones shirt isn't the best look and leaving them hanging out is, well, gross.  So, I took an old t-shirt and made some little pouches to hide the drains. Voila! Problem solved.  See the photos below for the before and after.

And what was the occasion that would cause me to get out of my beloved sweat pants?  I had made plans to go to the Children's Theater with our neighbor on Saturday before the cancer diagnosis.  I felt good enough to go so I gussied myself up a little and off Alice I went.  It was Alice's first time there and she loved it.  Thanks Jenny and Edith!

A quick health update: We went to our first post-surgery doctor visit on Friday and I had two of the four drains removed.  There's a bit of skin on my right breast that didn't "take" (i.e., it died) so I'm going in tomorrow for an office visit procedure where the plastic surgeon will remove the skin and sew it up again.  This happens sometimes when the skin gets a little too thin when the general surgeon removes the breast tissue. The goal is to remove as much of the tissue as possible while leaving enough viable skin for the plastic surgeon to sew up.  It's not a big deal - it will just delay my "fills"(i.e., adding fluid to the expanders to start to build out my new chest).  

Thank you all, dear friends, for keeping us in your prayers.  I truly believe that I'm doing so well in the healing  process because of all of love and good thoughts coming our way.

Love,
Lisa

Check out the unsightly drains.  The drains collect excess fluid from my
healing wounds on my chest.  I empty them and record the amount of fluid
collected a couple of times a day.  When my wounds are sufficiently healed and
aren't producing  as much fluid, the drains will be removed.  

Lark's comment on this picture, "Yuck, Mom.  You shouldn't put that on the blog."
That just makes me want to put it up here more.  Is that wrong?

Ta da!  Drain holsters:-).

Happier Day | Happy Valentine's Day

I feel MUCH better today - emotionally and physically.  A good, hard sobbing cry does wonders for letting go of sadness.  Thanks for all of the kind thoughts, words and deeds.  My amazing support network is making this much easier.

Speaking of support, the unsung hero of all of this is my rock of a husband.  He's the one drying the tears, keeping the train on the track at home and just quietly supporting me.  I love you, Tom!

Enough words.  Here are some pictures...

My sister, Kristy, with surprise surgery-day support shirts.  Kristy and I both
learned to "Doodle-loodle doo" from our mom.  It's a happy little song that comes out
when we're excited or just trying to quiet the voices in our heads. 

That back of the shirt.  I love it.  Thanks, Kristy.  

Our beloved Miss Kate, nanny extraordinaire   What will we do without you after next week?
Kate and Alice both wore capes on Tuesday.  Yay for Miss Kate!     

Dublin truly is the best dog in the world.  She only leaves my side to go to the bathroom.
She was my 30th birthday present to myself.  I was newly unemployed at the time and
decided that was probably the best time to get a puppy - when I was home to train her.
I bury my face in her fur no less than 5 times a day.  

Our little ladies getting ready for some snuggle time before  bed.  

A quick Valentine's Day photo of  me, Alice and Tom (Lark was at school) in our
front yard fort. I'm still not supposed to lift anything heavier than a glass
of juice, so I didn't contribute to it, but just wait until I'm back in action.
We're building a fully-functioning igloo!

This is what my set up looks like.  It's an extra-long ace bandage
wrapped snugly around my chest to help minimize swelling.
 I have two drains coming out of each side of my chest (four total) that
empty in the grenade-looking receptacles pinned to the front of my shirt.
I empty the containers two times a day.  Really, they're not that bad.
 I have my first post-surgery doctor appointment tomorrow and I bet I'll lost two of them.  

This is the first time I've used the caption feature on Blogger.  I'm not loving it, but I'm too tired to change it.  Good night!

Best,
Lisa

So this is when it gets hard

It will officially be one week tomorrow that I had my double mastectomy.  I knew there would be waves of sadness and other emotions, and I've been getting pummeled with them today.  Lots of tears and sadness. I miss having energy.  I miss picking Alice up.  I miss my body the way it used to be.  I'm sad that Lark is afraid of my drains and even more afraid of what my chest looks like.

My poor chest looks like a war zone with thick, angry purple lines going from where my nipples uses to be to the edge of my now flat natural breast.   On the side of each breast, there are two drains (thin, clear tubing) that come out of my skin and empty into what look like little clear, plastic grenades.  There are four collection vials, or grenades, in total that need to be emptied three times a day.  The grenades have a loop of plastic at the top and are attached with a safety pin to an ace bandage wrapped around my chest.

The first part of breast reconstruction is having expanders put in under the pectoral muscles.  Expanders are used to gradually stretch out the skin so that it can accommodate an implant.  When I first heard that I was a candidate for immediate reconstruction, I thought, "Wow, I can be back to at least looking normal right away."  That's not exactly how it works.  Over the next 4-6 months, I'll go into the plastic surgeon to have the expanders filled gradually until I reach my desired size (we're going for parity with pre-mastectomy chest). Once the desired size is reached, they'll add a little more to the expander and then I'll wait for a few months (maybe to let stuff settle?) before replacing the expander with an implant.  In all, it's about a 10-month process.

For the record, expanders do not look like a natural breast and they are uncomfortable.

I stopped taking percocet today because it's doing a number on my digestive tract.  My poor belly is so bloated it looks like I'm pregnant.

I would love some lunch time visitors to help keep my dauber up.   Or coffee... I'm always up for coffee:-).  Let me know what works.

Love,
Me
 

Recovery Day 3

My dauber (read a couple posts back for definition) is at a 4 out of 5. I'm filled with gratitude for everyone who is on this journey with me. I'll most likely be heading home today. I will miss the kind and attentive nurses here at St. John's. But, I'll take Tom and Lark as my nurses any day!

Tom brought Lark and Alice to see me last night. Lark's so sweet and in tune with what's needed. She can't wait to wash my hair for me:). Alice had the biggest smile on her face the entire time she was here. I put a pillow over my chest to protect it and she just laid there beaming with happiness

The Big Reveal
Yesterday the plastic surgeon, Dr. K, removed the ace bandage around my chest to check everything out. I didn't find it horrible or even sad. Rather it's a permanent reminder to love life and to be present. I'm sure there will be days where I'll be bummed about it, but for now I'm just grateful for life.

Other Visitors
In addition to Lark and Alice visiting me, my sister, Kristy, came with her husband, Brad, and my nieces, Maxine (7) and June (3), and nephew, Hyde (5). They were all so darn cute and asked some great questions about breast cancer. Just before they left, Hyde asked if he could see my chest. He's such an inquisitive little guy! I told him that maybe someday I'll show him what it looks like. He also insisted that I needed a balloon:). Thanks for visiting me!

My mom, dad and aunt Charlotte were also here. Thank you! It was so nice to catch up with Charlotte.

My mom's here with coffee, so I'm signing off.

With gratitude,
Lisa

Cancer Free! Yay

Our prayers have been answered. The cancer had not spread from the breast. Yay!

Last night was rough. I cried until I felt empty inside. You know that dull ache you get in your heart when it feels like it's broken. That's how I felt. It was good to let some of that grief be washed away.

Today was, in a word, beautiful. Tom, my dad and mom and sister, Kristy we're here to support us. The surgeons and nurses couldn't have been more supportive. The lovely ladies in the St. John's mammography center were shocked and saddened to see me on the surgery list. They were so loving and reassuring that it brought tears to my eyes. My two surgeons, Dr Ogren, who preformed that mastectomy, and Dr. K, plastic surgeon, we're also wonderfully supportive, patient and kind. They took the time needed to answer our questions and just checkin to see how we were doing. The nursing staff caring for me this evening are beautiful souls as well.

Who says angels don't walk among us?

In addition to having mom, dad, Kristy and Tom here, my Larky Lou paid me a visit and helped me walk the halls. I love you, Lark! I love you, too, Moss Alice!

Okay, nodding off e every couple words is making this hard to finish! I'm going finish this quickly...the surgery went off without a hitch. They feel confident they got all of the cancer. I'm pretty darn sore.

I'm beaming love, light and joy to all from my hospital room . Thank you for your continued prayers and support.

A note to my awesome husband, Tom Pinney: You, my love, are one of the most courageous and compassionate people I know. I'm so excited for our many adventures in life.

Please forgive typos - they're Percocet induced!

Love,
Lisa

Ready for Tomorrow

It was a great day today that started with cuddling with Lark and Alice in bed.  After the girls were on their way for the day, Tom and I had a little alone time running errands, grabbing lunch and then indulging in massages.  All that's left is to eat a good dinner, pack (lightly) and get a good night's sleep.  We're ready for tomorrow!    

Throughout all of this, we've had plenty to laugh about.  For example, Miss Alice, who just turned three, shared the following with us yesterday, "I was thinking in my head that you have a tiny toilet in your breast.  And some people.  And a fish."  She said it very earnestly and repeated it throughout the day.  We had a hard time containing our laughter. Good thing were getting that stuff out! 

I'll leave you with a few photos and a video.  Tom will post an update in the next couple of days.  Thanks for all of your love and support.  We are blessed. 

Me and Tom at lunch today

Lark and Alice enjoying the fire and Super Bowl

And a moment of Zen...