Apparently, I have a lot more to say….

Hi family and friends,

After a long hiatus, apparently I have a lot more to say.  I thought I was done, but I’ve had this nag, nag, nagging that is saying “write, write, write”.  So for those of you willing to listen, let part three of the journey begin.  So, if you have blissfully forgotten, because it’s been a while, here is a recap of Part I:

Diagnosed with triple negative breast cancer on Nov. 4 2009.  Diagnoses was followed by a chemo, lumpectomy, and radiation.  Treatment was effective:  complete pathologic response.  I am forever grateful for the “army” of friends and family that supported us during this difficult journey.

Part II started with a call from a nurse following a routine follow-up mammogram in December 2011.  Part II then involved a bilateral mastectomy in Jan 2012 and reconstructive surgery.  Because the second cancer was estrogen and progesterone sensitive, I started Tamoxifen in March 2012 following recovery from surgery.  Part II continued as dreamy, lethargic blur.  Tamoxifen sapped my energy, my strength, my memory, and about the only thing it motivated me to do was sleep.  Prior to a work trip to Hawaii in March 2013, I discontinued Tamoxifen and have remained off of it since, still struggling to find balance, energy, and “myself”.  Fast forward to Halloween 2013, the first for me in recent years that wasn’t dominated by thoughts of cancer, recurrence, fear, or loss.  Instead I was full of joy and pep.  I remember thinking sometime during that week, that is should be illegal to feel this good.  It had been so long, I truly had forgotten what it felt like.  Thank goodness I made a mental note of those now forgone feelings.

Onward to Part III of this journey, which is for my sister, my daughter, friends and family at risk for this disease.  Since my diagnosis (or actually prior to it), my Mom and sister have been enrolled in a high risk breast cancer program.  In addition to yearly mammograms, they get yearly or biannual MRIs.  MRIs don’t involve any radiation, but are more sensitive at picking up small cancers, particularly in young women with dense breast tissue.   On November 9, 2013 (4 years + 4 days after my original diagnosis), my dear sister learned she also had developed a triple negative breast cancer.  My disbelief at her diagnosis has been replaced by an overwhelming sadness that just doesn’t seem to end.  So, I want to continue this effort, so that I can help my sister heal the way I healed, and so that we can both again celebrate Halloween with our families free of the black cloud that cancer brings.

More soon, in the meantime, please lift Gwen and her family up in your prayers.  She has surgery on Tuesday.

Love,

Emily

2 steps forward, you know the rest

Dan and I had perhaps our last visit ever with our breast surgeon, Dr. Johnson.  First question he asked when he saw me was, “How is your head?”.  Such a sneak, that surgeon.

How did he know?  How did he know that the night before Dan had spent an hour convincing me that I’m not going to die.  That my new-found fatalism is total overkill.  In response to his question, I think  laughed and said something about being okay.  He then told me to do whatever necessary to feel better, because I was going to be just fine.  (This felt good, but I do remember he told me the same thing in 2010).  Earlier that same morning, Dan kindly pointed out my notes from a 2009 visit with Dr. Puhalla wherein she said that with a complete pathologic response to a  triple negative breast cancer, the recurrence rate over a lifetime is 5-10 percent.   I guess that made me feel a little better.

Anyway, he then looked at my incisions and start of reconstruction and was very pleased.  He wasn’t like, “wowwy, wow, wow, wow” (because that would be really creepy), but he said that thus far, my reconstruction looks better than that of many women who haven’t had a prior lumptectomy and radiation.  Again, kudos all around from Johnson and his nurses about Dr. Gimble.   He also then told the analogy of when a woman walks into a new house, she can also see the potential.  What it will look like.  Well, he said that I am missing that gift when it comes to my breasts, but that he assured me that they will look very nice.  I don’t know if Dan was blushing, but I sure was.  The visit ended with a kiss to the head, high-five, and a “get out of here kid”.  I think I’ll miss him.

In other news, I’ve started reading a 371 page tomb on “Breast Cancer and the Environment” published in 2012 by the National Academies Press.  I’m just in the beginning stages, but here’s a sneak peak at the potential factors they will cover (if you click on the box, it will enlarge in a new window).  In the meantime, I’m going to re-open my mental toolbox and rejigger that pesky fatalism that’s been nipping at my heels this past week.

From "Breast Cancer and the Environment". 2012. National Academies Press.

A numbers game

Today was a day chock full of Dr. appointments.  First stop was the oncologist to review the pathology report from the surgery.   The pathology report was all good news and confirmed what biopsy reported (6mm tumor, slow-growing, strongly hormone-driven).  Get out your ruler and see just how small 6 mm is (less than 1/4 inch).  Dan and I talked with Dr. Puhalla for a long, long time.  She’s so good about respecting all our questions and taking the time to go into the statistics.  Based on the pathology of this cancer, the likelihood of metastasis is low (about 5%).  Taking Tamoxifen will reduce this risk further (to about 2.5%).

Should this make me feel good?  The odds of me even getting an entirely new cancer within 2 years of first being diagnosed were even lower … less than 0.5%.  But yet, it happened.

But the elephant in the room during this whole discussion is the potential metastasis of the first cancer, the triple negative (TNBC) one.  That’s the one that keeps me up at night.  That’s the one I’m still scared sh*tless about.  Despite having gone through chemo, 2 surgeries, and radiation, I just want someone to be able to say, “Emily, you’ve done it.  You are going to live a long life.”  But you know, it’s so frustrating that nobody can.  Of course, I realize that none of us have those guarantees.  Each of our days could be our last for countless reasons.  But it still saddens and angers me.   At each turn on this 2+ year journey, I’ve been blessed by the best of all possible outcomes.  I had a “complete pathological response” to the TNBC where only about 20% of patients get this type of response (meaning after chemo and during surgery there were NO cancer cells present.  It was gone.)  Today, in the waiting room at the oncologists office, I was surrounded by women, young and old, stricken with this disease.  How many of them will be around in 2 years, 5 years, 10 years?  I told Dan that seeing the young ones breaks my heart, and he reminded me that I am one of them as well.  I have lots more to say about this, but will leave this post with a happy note.

Onward to the Dr. Gimble’s office where he removed the last of the 4 drains.  Two of which were in for 16 days.  I’m so glad they are gone, out, kaput!  Freedom to stretch, and wiggle, and dress, and shower easily.  I’ll return in two weeks to get my second expansion.  The first was done at the time of surgery.  I knew that he put some stuff in there, but I learned today that he put in 300 ml (that’s about 1/2 pint of beer or 10 oz.)!  No wonder I was so sore.  When I think about that much beer in my chest, it makes me smile.  Surprisingly then, I’m almost halfway done with the expansion process (at least in terms of volume).  I think he said the goal would be to add 400 more over the next several months.

Dan and I celebrated drain removal with a nice lunch at Mad Mex and a margarita.  The celebration continued into the evening with a post-dinner ice cream cone with Maggie.  Now, I’m off to read and try NOT TO THINK ABOUT CANCER ANYMORE for the next hour before bed.  Yeah, we’ll see if that works.

 

 

 

Relief

Relief arrived in so many forms yesterday.  I got two of the four drains removed.  And approval to switch from the compression tube top of death to a sports bra.  And the “all clear” for driving (albeit my range of motion is still limited, so this is kind of weird).  And the go ahead for sleeping horizontal like a normal person, without having my arms elevated.  I spent the afternoon reveling in my new freedoms and last night sleeping soundly.  The remaining two drains are expected to be removed next week.  My energy levels are great, so much so, that it is a bit hard to be house-bound.

Several of you have inquired about this whole process, which like chemo, radiation, and mastectomies I also knew nothing about several short years ago.  Here’s a quick summary.  Over the course of the coming year, I’ll have at least three surgeries.  This first one, is by far, the most invasive and difficult to recover from.  The remaining two are outpatient.

Step 1:  Skin-sparing mastectomy and placement of tissue expanders.  For the mastectomy they cut out an ellipse of tissue about 5 inches long horizontally across each breast that included the nipple and areola.  All the other skin remains.  The tissue expanders are silicone (I think) sacs that they eventually fill with saline to stretch out your pectoral muscles and skin.  I think there is maybe 50 ml of saline in them now.  The expanders are underneath the muscles.

Step 2:  In about 2-3 weeks, I’ll start going in for weekly or biweekly injections into the expanders until I’m a little bigger than my goal size.

Step 3:  Once the skin and muscles are stretched sufficiently, there is another surgery to replace the expander with an implant (either saline or silicone).  I’m thinking this will be around May-June-July.  This is followed by another 10 week period of no lifting greater than 5 lbs.

Step 4:  If everything is holding together well, then they will somehow or another, reconstruct a nipple.  I’m blissfully ignorant about this part now.

Step 5:  Tattoo (my first tat and hopefully last!) of the areola.

So far the right side (that received radiation) is holding up well but I have a small area of redness that Dr. Gimble is treating with antibiotics for good measure.

Hope you all have a wonderful weekend.  Thanks again for your messages of support, written, telepathic, and otherwise!

One week out

Sure enough, each day is getting easier.  As I was told by my wise friends that it would.  Today was my first day “home alone” without help.  And I enjoyed some lovely visits with friends and a nice, long walk this afternoon.  I also got dressed by myself this morning (whoopee!).

I got a call from the surgical oncologist yesterday with the pathology results.  And thank goodness, everything looked great.  The tumor was 6mm and the two sentinel nodes they removed did not have any cancerous cells.  And with surgery alone, the “cure” rate (what a misnomer when talking about cancer, I mean really… nobody is ever safe from cancer) is 96%.  With Tamoxifen, it goes even higher.  Amen.  I’m hoping to get these drains out Thursday (at the earliest) but perhaps early next week.   Then life will drastically improve (I can drive!, I can stretch!).  Now it’s hard not to be scrunched forward all the time, thus making my shoulders sore.

These days when Dan helps me shower, he generally stands in front of the mirror so I can’t see.  But last night I saw, and oh my, what a brutal, gruesome site I am.  Enough of the pink ribbons, pink this, pink that.  Breast cancer is a brutal disease, and I pray for the women every night are not as fortunate as me to have access to stellar physicians and the most up-to-date medical knowledge.

I wanted to close with a special shout-out to my sweet Mama, who came and stayed with us for 6 days last week to share her love and nurturing.  She’s now blissfully sailing on a cruise ship to the Caribbean.  My sister was just here over the weekend and helped entertain (and exercise!) Maggie with lots of walks.

Thanks all for your support over this past week.  The emails, comments, food, and love have been uplifting and kept us going over this past week.  It’s been a tough haul, but the worst is certainly over with!

Maggie on one of her adventures with Aunt Gwenny to the local coffeeshop

A day (or two) of complaints

I had a stunning realization yesterday.  I think my semi-euphoria and peacefulness of the surgery day and thereafter was a product of pain meds.  This came upon me while managing my first day without percocet yesterday.  I did lots of complaining and moaning and it was a trial for Dan, Maggie, and Gwen to put up with me.  Maybe even June Bug was tired of me.  Gwen kept reminding me of how well I was doing, and I guessed that helped.  Here’s a summary of my progress yesterday, accomplished with much grumbling:

No narcotics.

A 20 minute walk.

No nap.

I have four drains in place; two on each side.  Once the volume drains from all those is less than 30ml in 24 hours, they are ready to come out.  Yesterday, 125ml came out.  So, a ways to go.  Optimistically, I made an appointment for Thursday this week.  We’ll see.  The drains themselves look like grenades.  So I feel like GI Jane walking around with a belt full of drains.  Everything is held in place with a dainty compression tube top.  By the end of the day, it feels like it’s crushing my lungs and ripping into my armpits.  The dainty nature of this torture device (pink, with cute little flowers) is so deceiving.  And I can now imagine how corsets wearing women back in the day felt.  God bless us all.  No small wonder that women burned their bras back in the day.

With that said, despite all my complaining, my rational self knows that I’m doing well.  When the home nurse came to visit Friday, I answered the door.  She said, “Well, I didn’t know what to expect, but I certainly didn’t expect you to answer the door.”  She said my incisions were “beautiful” (rather than gruesome, as Dan and I feel about them) and that I was a model patient.  Whatevs…  I want this tube top off and grenades off my bod.

Okay, done my bitchin’ for the day.  Thanks for listening.

(I should add that as I write this, my sister is painting my toenails.  Also, we had the luxury of dining last night on a feast of amazing homemade enchiladas from a friend as we watched the Superbowl.  And the Patriots lost.  So, indeed we have it good and I should get my act together!).

Back in the saddle again

The last thing I remember heading into the operating room was telling Dan, “don’t cry, don’t be sad”.  That was it.  What a wonderful thing to have his face be the last thing I remember.  Little did I know, I met all kinds of residents that later re-introduced themselves to me the next day.  One after the other told me “you probably don’t remember, but we met in the operating room”.   Good thing I was strapped to the table, lordy knows what else I may have done!

Two other things stick in my mind about that day.  I had a one-armed nurse anesthetist.  You know, the one that puts in the IV.  I was like, “oh, great and I get the one-armed guy”.  So stupidly judgemental of me.  He was the nicest guy, I didn’t catch his name, but he was amazing.  And his technique was flawless.  And watching him work was amazingly distracting, so I didn’t feel much discomfort.  In strolls Dr. Johnson, the surgical oncologist, singing a song about Emily.  The other thing I remember was how ready I felt, a little scared, but mostly just ready and prepared.

Then nothing until the recovery room.  Apparently, I was there for a very long time.  They had a hard time getting the pain under control.  Then the itching from the pain narcotic started, and then they gave me a bunch of meds to control the itching  that promptly knocked me right out again.  Maybe that is what took so long.  Anyway, I figured I was in pretty good shape, considering that the woman next to me was moaning up a storm.  Everytime the nurse asked her what her pain level was, she’d say 8.  Then the nurse would say, “but I just gave you more pain meds, it can’t be 8”.  Finally, once I woke back up, I was anxious to see my Dan and learn how the surgery went.  Being wheeled to my room, I was filled with a profound, deep feeling of joy and a sense that I made the right decision.

Beautiful Dan visited with me for a while, and then left to be at home with Mom and Maggie.  The rest of the night was a restless, itchy, pain-filled blur.  In hindsight, I should have had either Mom or Dan stay with me.  I was so out of it, had easy access to the pain med button, and was probably not very clear about communicating what I needed.  And the nurses were not very attentive.  This is probably the only thing bad I have to say about the whole experience.

my interpretation of the "residents"

So, fast forward to 6am, when there is a knock at my door.  The door opens and there stands 5?, 6?, 7? young, handsome residents of both the plastic surgeon (Gimble) and surgical oncologist (Johnson).  At first I was uncomfortable baring all to these young men, but that soon passed.  I think Dan mentioned that I have one problematic drain, so there was lots of head-scratching and fiddling with that, but it was never resolved.

Because of the itching and problems with pain management, I decided to stay for a second night.  It was a wise, wise decision, as the difference in my recovery over that 12 hour period was amazing. Our bodies are such amazing things and the capacity for healing is just miraculous.  Now I am home, comfortable (mostly on Advil), surrounded by my loving family and dog, and the love of those who care for us.  My room is filled with flowers and my heart swells at with the thought of how lucky I am.  I truly am blessed and thank you all for your many prayers, messages, thoughts, and kindnesses sent our way.

 

 

The Day of the Drugstore Cowboy

So, despite my optimism last night, Emily remains in the hospital for one more evening.

Last night after I left, Emily started itching. It was the dilaudid. They gave her benedryl, but sleep was not necessarily restful. And she was hungry. And they wouldn’t give her solids, though the morning nurse said jello would have been fine. And to stop the dilaudid, she needed to eat some solids to go to the pill pain reliever (the vicodin). So, Emily was not a rested camper this morning.

The drain performance gradually improved over the day and seems to be holding vacuum as I write, precluding the need to go back in and poke around.

But the vicodin wasn’t cutting it. So they gave her a wee bit of dilaudid. Itchy. She made me go to the gift shop and buy a back scratcher. In hindsight, my surprise at finding one was not well founded. Lot’s of people must itch with dilaudid. But that was out for blocking the hurt.

The next option is percocet. Last I heard, that would be the nighty night drug. And the resident thought vicodin would be enough tomorrow.

Maggie took it well (her mom not coming home). She’ll be happy to see her mom tomorrow.

No hats on the bed tonight, so things look good for tomorrow.

Again, thanks for the support.

I woke up happy…

So, finally, around 8pm, Emily was moved from the recovery area to her room on the 2nd floor of Magee Hospital.

She looked great, rolling into her room.  I was worried, as the person calling me to tell me her room number had mentioned something off hand about finally getting her pain under control.  There was pain, but nothing more than I guess I expected.

Once settled in, her nurse asked about her drain.  One of them did not seem to be holding vacuum.  Fortunately, as the resident mentioned as he looked things over, “that’s why we do two.”

She told me she woke up happy, with her decision, with the care.  Her biggest complaint was hunger, but they are keeping her on clears for the night.  So things seem good.

Morphine started kicking in and she was ready for sleep.  I came home, and of course Maggie is still up.

Tomorrow around noon, as long as things continue to go well, Emily will come home.

Thanks for all the thoughts and support today.  We appreciate it.

Surgery’s over. Emily’s in recovery.

Dr. Gimble reports everything went well. She should be in a room within an hour or so.