Surgery Day - October 17, 2012

Today was surgery day. I didn't sleep really well last night. I had dreams about the surgery where it was done on a couch, and I needed a graft... Let's just say anxiety was high.

We got the kids out the door...Lolo took them to school while J took me to the National Melanoma Center at Washington Hospital Center.

9am Nurse Robin took us back and had me laughing so hard, it really reduced my stress. We ended up weighing not only me...but my purse! Can you believe it weighs 8 pounds?!?

9:15am The Nurse Yvonne took me back to the OR. J sat in the chair that would be at the top right or my head...and I got into my gown. He stayed there the ENTIRE TIME.

Then Dr. V came in. What a sweet guy...with handsome look and bedside manner that all doctors could learn from. He prepped the area and started the music...he picked a Coldplay song on YouTube, it was calming.

9:20am Dr. V proceeded to inject lidocaine all around the area.

But J knew me better and when that one was over...he played a different Coldplay song.

Then we remembered my phone plays pandora!

Pandora played while Dr. V continued. Dr. V started laughing and said "I love this game!" It took me a minute to realize he was talking..."guess that artist" with the music. We all laughed.

It took 6 syringes...2 more than originally thought to anesthetize the area.

While we played "guess the artist," Dr. V proceeded to cut out a diamond shape out of my back...the kids thought it looked like Israel way back...and Unc thought more a female private part...I will go with diamond.

 

I was really nervous that I would begin to feel it. But the sound was the worst...not the sound from the outside...but sort of hearing the cutting from the inside...like when you are under water. It is hard to described.

So at first it was the cutting...and then it was the cauterization sounds...the worst. The sound of the zaps going *into* your body....remember he dug out all the tissue down to the muscle. That zap sounded like it was going into a cavern. It not only made a sound...but had an echo...and a reverberation!

Then came the stitches. Layer one...about 4. Layer 2 about 5...but before he got to layer 3...he had to do something I wasn't expecting. In order to stitch the two sides together to form the line, he had to detach the layer of skin from the tissue below....like when you want to put the spices and margarine under the skin of a turkey.

That sound...I can't even go there. Think of removing a hem stitch...but fast...

Then it was finished up with 12 stitches on top.

I was bandaged...got dressed and we were on our way home.

10:50am I was in the car and sent out a message saying: Done and on the way home! Though we have to stop and get worms for Fuego! Results should be in by Friday or Monday to confirm complete removal. 

But what we really did:

1. Stop at the kids' school to let them see for themselves that I was fine.

2. Stop for sushi buffet lunch.

3. Stop to get worms for Fuego!

We got home and I was still feeling ok...until about 2pm when I guess the lidocaine started wearing off!

And now I lay flat on my back.

I am so thankful for the support I have, but most of all for the amazing husband and life partner...he is a gift, the love of my life. To sit their and watch as they did this...so I could see him the entire time and feel reassured was tremendous. I can't imagine.

Calls and texts from friends and family were wonderful. Also, two fun deliveries were made - one from my Board and Staff - and the other from the Federation I work closely with. It was so nice, thoughtful and truly made my spirits lift. Here is to mending quickly...early detection...and being cancer free.

One Month

It has been a month since I got my diagnosis. So much has happened in this month on so many fronts...

What I can say is that I feel positive and lucky. I am starting to tell people outside immediate family, only so they know the reasons I have been dropping some balls and not have the kids tell them...or worse, find out on Facebook!

I am grateful to a brave young woman who shared her story and journey who lost her 14 month fight to Melanoma 6 years ago - and to troops who continue to fight for awareness and early detection. If it weren't for her chronicling of her story I don't know that I would have been mapped 6 years ago...and paid enough attention to get checked.

TEB has been in my thoughts and her family in my prayers for years. Her life and journey has made a difference in my life and the lives of my children and family.

May her memory continue to be a blessing for all who loved her and all the lives she has touched.

______________________
updated to put context back:
NES is my friend who first forwarded me TEB's blog...in the guise that she and I (hormonal and pregnant) needed more blogs to read and cry while reading. But TEB was the reason our pregnant selves found Dr. G, (female and on both of our insurances), and made an appointment together post the birth of our bundles (E and Puppy). Thing was, Dr. G told her, come back if she saw anything change...and she told me - get mapped and I'll see you every year from now until eternity! And not too long after that...she left the practice. I was dumb...I waited 4 years between the last time I saw Dr. G and when I walked into Dr. B's office.

"Day 18" - More good news!

Today we got the good news we were waiting for. The second independent lab confirmed that the first biopsy is a melanoma and it is Stage 1a! It might even be thinner than we originally thought - so not .5mm but possibly as small as .37mm. That is good!

The second biopsy is not melanoma - but an atypical mole, they treat that with the same excision as they do the other...and since they are so close, one surgery will get them both.

My sister's wedding is September 30th and the doctor is more worried about me traveling within 14 days of surgery because of infection - than waiting for the surgery, as it has now been confirmed 1a.

Surgery is scheduled for October 17th - 9am.

Deep breaths. This is good news.

"Day 15" - Good News and No News

So today I got a call that the third biopsy is benign!!! Good News!!

But Dr. V's office said that the second opinion biopsy slides from the first two had not yet made it to Boston.  Not happy about that. So we are still in a wait and see mode.

"Day 13" - 13th Anniversary and a visit to the Melanoma Center

Today J and I spent our 13th Anniversary on a field trip. We drove down to the Washington Hospital Center in DC - it shares a campus with Children's Hospital, so we know that drive pretty well.

We found parking and waited for our turn. There was a fish-tank in the lobby - so it was nice to small talk about something we know well. The nursing staff was tremendous, I mean in their depth - not their size or numbers. As we answered question after question they really made us feel as comfortable as we could. Even having J answer many of the questions as - who would really trust me to answer them! Team effort as we ping-ponged.

The most uncomfortable part, for the both of us, was having Dr. V check me out head to toe and every crevasse in between to make sure nothing was missed.

Did you know there is a frame of reference on your back called a "nipple line?" It is what it sounds like...but as I think about it how accurate a reference is it? All nipples don't line up...and what if  you are wearing a different bra?

Anyway, the bottom line is they did another biopsy of one on my back, right side now (other two were on my left side). Those cells are going to Boston to be read. And my others are going to Boston to get a second opinion as well.

Hoping to hear back by Friday or Monday about both!!

We are going to wait to schedule surgery until after the second opinion comes back. But the good news is he feels like he can do the surgery without a skin graft!! So W is off the hook:)

J did promise me that for our 14th Anniversary we would do something more fun!

Friendship is...part 2

When you call your other best friend in full blown out hysterics, incomprehensible and she doesn't know if you are crying over your own diagnosis or a parenting issue or a work related blunder...and all you say is: "just don't tell me to calm down"

Her first response, without knowing the issue was: "get riled up!"

And I did...and with her amazing grace and guidance...I calmed down.

This cry happened to be over parenting issues/puppy being sent home from school and probably not invited back...but mixed in with getting that call while on the biopsy table for a third time in as many weeks, I hit my breaking point.

Thankful today for best friends.

Friendship is....

When your best friend offers to help in anyway, and adds: "like if you need a flap of skin or anything. Mine is not in *the* best condition, but it is pretty nice and tan right now!"

Not just friendship, but LOVE.

Letter to the school...

Dear Friends (Bob, Belle, Bean and Puppy's Teachers, Learning Specialists and Guidance Counselors),

I am writing this note to you in confidence, as you all have direct contact with our children on a daily basis.

I wanted to make sure that you are informed about things happening at our home that may affect our children's behavior, academics and/or mood.

I know most of you for many years in different capacities, but some of you are new to our "family;" and to my new friends I apologize for this to be one of the first communications you receive from me.

I found out last Friday that I have cancer, melanoma, we are waiting for final staging information.

We believe that we caught it early.

We were hoping for positive news today from a second biopsy so that I could have surgery on Wednesday; that did not happen and my surgery will be more invasive so it has been postponed and referred to a different doctor. I do not know that date yet, but I will let you know as soon as I do.

We plan on talking with the kids individually on their level on Sunday or Monday about it.

I don't believe in hiding things, or giving them too much information. Our conversation will be age appropriate and matter of fact.

The hope is that since we caught it early, after surgery all will be fine.

Until we hear otherwise - that is how we are approaching the situation.

That said, for children to hear the word cancer is scary, especially since they know J's dad passed away 10 years ago from (brain) cancer.

(As of Tuesday September 4th) This is not a secret; I do not want them to feel they have a burden. Once we tell them, they are free to discuss it with you or a friend as appropriate.

I am looking to you, as you spend much more time with them during the day, to help give them guidance as to appropriate time and place. Again, they may not feel any need or desire to share.

They may not say anything to you or their friends, but they may and I just want you to know what we are saying to them so that if they get confused or say something not accurate people are not alarmed; especially if it invokes an emotional trigger in whomever they are talking to.

Points:

- it is cancer, it is called melanoma

Good news -

- the doctors think we caught it early and when caught early it is a very treatable and curable cancer
- that means I will have surgery, but don't see any reason for chemotherapy or radiation at this time
- we are very lucky to have some of the best doctors in this area

Other info to alleviate their worries for themselves:

- we are and always have been careful about sunscreen and being in the sun with them
- they do a great job wearing swimshirts to protect their shoulders and back and sunglasses/hats to protect their eyes
- this is not the same kind of cancer that Grandpa G died from and brain cancer is not hereditary (even though he was not my father - he is J's I don't want them to worry)
- we will always be honest with them and they can ask any questions
- they can always feel free to come to us, Grammy and Grandpa (my parents) or Ms. G (nurse at school)

Please do not hesitate to contact me with any questions you have or concerns about the kids. I promise to keep you updated, but do not feel like you are prying if you have questions - if I don't feel comfortable sharing yet, I will let you know.

Thanks for all you do each and every day for our kids. We truly appreciate it.

"Day 7" More News...

So I got another call today from Dr. B's - the second biopsy came back andonce again there is good news and bad news.

Bad news is that the second biopsy came back as Melanoma

Good news is that it is stage 0

Bad news is that she doesn't feel comfortable doing the surgery herselfsince it will be a bigger incision and more invasive procedure.

Good news is that I probably won't have surgery on our anniversary

Bad news is I don't know timing and things are up in the air.

I go back tomorrow so she can re-check other moles - as she thought this wasjust a precautionary one...and it came back not good. So now that the incisionwill be bigger she wants to check to see if there are others in the path.

I think this is the first time my heart started to feel fluttery in my chest- for lack of a better metaphor.

I started to think about how we will tell the kids - and then I started to write a letter to their teachers...I think that helped calm me a bit and re-group. Tomorrow is another day. We still don't know anything - one step at a time.

In the meantime I got a text from my friend JSM whowas diagnosed a year ago with Stage 4 Breast Cancer – that is already in herliver and bones. She is now 33 and has 17 month old twins (she was diagnosed at32 with 5 month old twins). She asked if we could take the boys overnight soshe and her husband could go to a B&B. I didn’t want to tell her about me.I am trying to put things in perspective, this is so nothing compared to her,but I needed her to know I wouldn’t be able to lift the boys…though we haveenough people in the house that could help. I probably shouldn’t have told her.But I did – casually. But then I felt really selfish. One of those things I will play over again and again in my head. Time to move on....

one step at a time.

 

"Day 6" Waiting...

Today I am waiting. Today I melted down. Today I am itchy.

Things aren't going well the second day of school for Puppy. And when I realized I don't know what next week will bring either health wise or school wise I lost it. But worse, I lost it on the phone with Puppy's school. I didn't get angry kind of lost it...I cried, and cried about the unknown.

It wasn't appropriate. I just couldn't keep it together. Waiting is hard. I have never been good at it.

And still being itchy sucks.

"Day 5" Itchy!

Don't know which is worse...the itchiness of the allergic reaction I had to my bandaid - last had on on Saturday...or the pull of the healing wounds from the biopsy.

I think right now the allergic reaction! See that red patch below the biopsy/ left is the second picture?
J may divorce me if he has to keep scratching it for me;)

"Day 4" Angry

My emotions are all over the place.
I am waiting for the second biopsy results to think anymore.

But today I am angry at me. The 16, 18, 20 year old me...the one who wanted to get tan at the expense of my 37 year old self. I am not even someone who was cute enough in a bathing suit to be laying out the way I did.

Of course I laid on my stomach...because my stomach up would have looked ridiculous. My back has paid the price.

I pray my husband and children don't have to pay a price for me turning my back.

"Day 3" Sunday, August 26

"Day 2" Cancer is cancer...but is it?

Cancer is cancer...but is it? How do I compare what I have to what friends are going through, what others are going through. I feel like I don't have the right to ask for prayers...or even pray myself.

Am I thankful this was caught early? For sure. Do I feel like I have cancer? No.

Most of me is assuming the surgery will be over on September 5th and I will be done with cancer. Is that true? Am I being realistic? Am I being naive?

Not quite sure what comes next. Or what to do.

Both Biopsies

"Diagnosis Day" Cancer. Second Biopsy

Don't know how I feel about that word. Today I got diagnosed with cancer. It is just stage 1a melanoma. But it is cancer. Don't know where this journey will take me.

Running thoughts:
1. "survival rate for 5 years 97% and 95% for 10 years"- best odds...but my heart sank to hear those words...survival.rate.
2. All first generation relatives must be checked. Parents, siblings, children....
A. someone gonna tell Bio? Or did he have it already and not even tell me.
B. Lolo and her tattoos...how will they check her? What if she needs a biopsy?
C. When can I get the kids in...how/when do I tell them.
3. I have not cried. I feel ok about it all.
4. Do I tell anyone? This is not a whoa is me...so many others have so much more going on...so much worse diagnoses...this is caught early, best case scenario, don't need to have the drama.

Cancer. Damn I was stupid....dear 16 year old me is right.

"Day -1" - Thursday, August 23

Day 2 post biopsy

"Day -2" - Wed August 22

Biopsy 1