Tuesday, March 26, 2013

Well played.

Well, I played it.  I was withholding it for something good, but the week before my double mastectomy, I played it.  There were many times that I was tempted to play it, but didn't.

Don't worry, I didn't bilk people out of funds or get an undeserved dinner reservation to some swanky restaurant.

I auditioned for a local essay show about motherhood.  The show is called Listen to Your Mother Listen To Your Mother - Northwest Arkansas and it appears across the country at various locations.  I submitted an essay last year and auditioned, but was not selected.  I refined my submission for this year and was able to draw on some recent happenings to sincerely express some of my thoughts about motherhood.

When I told my husband that I had been selected, he said, "you played the cancer card, didn't you?"  I didn't 'play' it, but I did write about it.  How can I not?  For the last twenty-plus years, cancer has been a big part of my life.  How can I write about motherhood and my relationship with my mother and cancer not be an element?  Of course, there is so much more to my past and current relationships than the battles with cancer, but it has been something that has defined me and helped shape my priorities and outlook on life.  

So, check out the show if you are not familiar with it.  It was a fabulous show last year that had the audience laughing, crying and sighing in recognition.  If you are interested, buy your tickets soon, as the show will sell out.

Thanks to all who have been following me the last couple of months.  Keeping this blog has been very therapeutic and saved me the money I would have spent on professional counseling.  I think I will use the funds to get a tattoo (aside from the pair of nipple tattoos I'm scheduled to receive later this year) and a motorcycle.

vroom.
vroom.



Saturday, March 23, 2013

The list...well, at least one of them.

I'm a list person.  I make lists all of the time.  I don't strictly adhere to them, but I do find that by the very act of making them, I feel a bit more organized and maybe even motivated.  So, of course, I've made a list over the last few weeks.  Below are some of the things that I found helpful throughout the recovery.

  1. Hibiclens Soap.  Infection can be a risk.  Start washing with the Hibiclens a week before surgery so you don't introduce any bacteria into the surgery theatre.  You will be disinfected, but they don't wash your whole body before surgery.  I also washed the clothes I would be going home in and packed them in a ziplock bag.  That might have been a bit over-kill, but why not.
  2. Sleeping mask.  Throw one in your hospital bag.  The nurses will be coming in the room a lot throughout the night and they always seem to leave a light on.  
  3. Pro-biotic.  You'll be put on a stiff anti-biotic, so taking a pro-biotic can help with any stomach issues you might have.
  4. Stool softeners.  The pain meds and anti-biotics can do a number on the ole bowels, so be prepared.
  5. Anti-anxiety meds.  I didn't have these, but wish I had.  There were many times that I wasn't in pain, but just couldn't get comfortable.  It would have been nice to just be a bit more relaxed.
  6. Wet wipes.  You don't really feel like showering for a while, but you will want to freshen up.
  7. Disposable tooth brushes.  Having some of those little single-use brushes would be very nice to have close at hand.
  8. Binder clips.  Use them to keep your phone/iPad/Kindle/iPod chargers attached to your bed sheets.
  9. Large safety pins.  I found that it was more comfortable to pin the drains to something around my waist rather than wear them in the fancy little neck pouches someone gave me.
  10. Flexible straws.  
  11. Front closure sports bra.  Hanes makes one that I found at Walmart.  They will send you home with extra dressings and ace bandages.  The ace bandage is fairly comfortable, but does get hot and annoying after a while.
  12. Soft, front closure shirts.  Shirts that are soft cotton and slightly stretchy seem to work the best.
I'm sure there are many more things that might be useful, but this list is a start.

Wednesday, March 20, 2013

Meet me at the hot tub.

Today was a good day.  

Today the nurse removed the last of my drains!  This set was the smaller of the two and they came out nice and easy.  I also received clearance to drive....woot, woot!  The nurse still wants me to take it easy and not lift anything over 20 pounds (there goes my Cross Fit PR) and be careful doing anything too strenuous.  I'm supposed to be doing the "spider-up-the-wall" exercises.  You stand arm's length away from the wall and walk your fingers up the wall as far as they will go (I'm going to turn it into a new work-out craze that involves special see-through pants and fasting...there's a pop culture reference in there somewhere).  I still have some work to do, as I can only get my arms up about sixty percent of the way.  I'm not very effective at calling the Hogs right now.

The reconstructive (plastic) surgeon's waiting room was full of mastectomy patients today.  We are pretty easy to spot.  Hair isn't the cleanest.  Clothes are loose and usually button in the front.  Clear, plastic bulbs are sticking out from under our clothing.  We are accompanied by a chauffeur.  Once we got back into the exam room with the nurse, I mentioned that it was all mastectomy patients today.  The nurse didn't really have a reason, just said that's how it worked out.  I joked that all the other patients were off on Spring Break showing off the surgeon's handiwork at the beach and ski slope hot tubs.  I don't think she thought is was as funny as I did.

Now, off to find the closest wall and do my best brown recluse impression....itsy bitsy spider....


Sunday, March 17, 2013

Concealing the six-shooters.

Yesterday was a big day.  I went on a dump run (we don't have a trash service out here in the sticks) with Walter and then ran some errands and did some craft/fabric shopping.  Every day I feel stronger, but there definitely is a limit to regular activity.  It probably doesn't help that I sleep in increments of three hours (reminds me of when Scout was an infant).  I can only sleep flat on my back and after a few hours, things start getting very uncomfortable.  I'd compare it to a bad sunburn on your chest, wrapped in an ace bandage with your twelve-pound cat sitting on it.  I dream about an increased range of motion where I can turn my lower body one direction and my upper body the other.  I dream of sleeping on my stomach.  Oh well, I'll get there.  It takes time.

Dressing for an outing takes a bit of thought.  I still have two drains and they have small (about the size of lemons) clear plastic bulbs at the end to collect the drainage.  For the first week, I wore the bulbs in these cutsie fabric necklace pouches that hung around my neck (courtesy of the Cancer Support Home in Fayetteville), but they started to feel very heavy and get annoying.  My solution to this was a very fashionable scarf tied around my waist with the bulbs pinned to it...think, holster style.  This style is much more comfortable, but makes is a little difficult in picking out the right top.  I guess I could go around in a midriff, but some people get queasy easily, so I try and conceal the bulbs.  It's much like dressing if you are carrying concealed.  You need a top that is long enough and loose enough as not to cling, otherwise you will be accused of "printing" and therefore aren't technically concealed.  So, most of the time, I'm out and about in one of Walter's button-up shirts.  The weather has turned warmed, so all of my long cardigans just won't work.  Only a few more days and the last of the drains will come out!  Woot, woot!

Everyone enjoy their St. Patricks day!  I've been trying to work on an appropriate limerick, but my poetry skills are fairly minimal....  This is as far as I got:

There once a gal who was somewhat crafty.
Whose tatas had become way too snarky
So she lopped them both off
And tried not to scoff
And now she is cancer-free.

Friday, March 15, 2013

Recovery...Downton style.

You've probably gathered from earlier posts, that I have been watching a lot of Masterpiece's Downton Abbey.  I can't get enough of melodramatic British romances.  This is not a love that my husband shares, but then, I don't love British zombie flicks, so we each now have our "own thing".  Given that the reason I actually have the time to watch 30+ hours of this series, I started drawing some correlations between my situation and the series about half way through Season 1.  So, I have compiled a guide to recovery based on Downton Abbey.

Recovering from a Double Mastectomy Using the Downton Abbey Method

1.  Employ LOTS of help.  
      I'm not saying hire your own lady's maid, footman or under butler (still can't believe Thomas, I mean Mr. Barrows, weaseled his way into that position in season 3), but take your friends and family up on the offer to help.  They want to help, so let them.

2.  Pillows, lots of pillows...and comfortable bedding.
    Think Lady Grantham when she is fighting off the Spanish flu or any of the bedroom scenes with the ladies of the house (except the unfortunate incident with the Turkish diplomat from season 2....you aren't going to feel like a romp in the hay for a while).  Copious amounts of good pillows will help get you situated into the most comfortable position for resting.  You'll be spending a fair amount of time in bed, so try and enjoy it.

3.  Storm the larders.
   It's important to maintain a good diet that is high in lean protein while you are recovering.  Was it season 3 where Mrs. Levinson saves the day by orchestrating an in-house picnic with fruit, cheese, ham, chicken, etc.?  Adopting a similar diet might not be a bad idea, although I would probably bump up the fiber content, as a side effect of the pain meds is sluggish bowels (I know, that's very middle-class of me to talk of such things).

4.  Find your own Mr. Branson.
   You may not want to take on the debate of British/Irish historical relations, but being chauffeured around town after a week or so is a marvelous idea.  You'll want to get out of the house for short periods of time.  So have your chauffeur take you down to the village to a nice flower show or over to Lady Somethingorother's for tea.  

5.  Have someone help you with your hair.
   It's going to take a while to be able to raise your arms above your eye-brows and you are going to start to feel a little frumpy.  Have someone help you with a shower and washing your  hair.  Lay out all of the accouterments de coiffure and let them dry and fix your hair (think O'Brien when they all went to the Highlands in season 3).  If you don't like that idea, have your own Mr. Branson drive you to the salon for a shampoo and style.  You may mess it up within a couple of hours, but you will feel fabulous in the mean time.

6.  Plan recovery-appropriate activities.
   You are going to start to get a little bored with mindless daytime television programming, so now is a good time to explore some other hobbies that you haven't in a while.  Suggestions:

  • Hand sewing or embroidery (Lady Grantham is always embroidering upstairs in the library while Anna is always working on the mending downstairs.)  Queue up Pinterest and knock yourself out
  • Letter writing.  Get some nice cards and/or stationary and write some letters to your friends.  It's somewhat of a lost art, but those that will receive your sentimental notes penned in your own hand will be thrilled.  If you want to stir things up, you can make vague references to some kind of brewing family scandal and then close the letter by saying that they will have to wait for your next letter or the next time you travel to London before you tell them what is really going on.
  • Floral arrangement.  You will probably receive multiple beautiful floral arrangements right after your surgery.  After about a week, the arrangements will start looking a little tired.  Get out all of those mason jars from the failed Pinterest projects and the scissors and start snipping and rearranging.  You'll end up with more arrangements that you can spread about the drawing room, library, foyer and sitting room.
7.  Engage in light physical activity.
   It is important to get up and move around.  Staying in bed all day can pose some blood clot risks and you'll feel better after moving around.  So, think about how all of the ladies walk around the well-manicured grounds at Downton...arms neatly at their sides or in a slightly bent position while fidgeting with a dainty handkerchief, small measured steps and never anything that would cause them to get too out of breath or sweaty.

I, personally, have drawn a lot of strength from the Dowager Countess.  She is my kind of gal.  At first I thought I might identify more with Cousin Isobel, but she just isn't quite caddy enough for me.

I'd love to hear some suggestions from others on how the Downton Abbey method can be applied to your recovery.  Next week I will be writing about the strong correlations between raising a teenager and The Walking Dead.
    
   


Thursday, March 14, 2013

Not as bad as a splinter

The visit with the reconstruction surgeon's nurse went well yesterday.  I had the two larger drains removed.  Scout was right, it hurt less than when she had that epic splinter.  It kind of felt like a scene from a sci-fi show.  I could see the tubing under my skin moving as the nurse pulled it out from the side.  Weird, very weird.  The last two drains should come out next week and then the fillings should start in a couple of weeks after that.  The nurse thought that everything looked really good and I was healing nicely.  She gave me clearance for an increased range of motion, so I'm excited to start some gentle stretching.  Hopefully I get clearance next week to lift more than ten pounds so I can get up in the sewing loft (I'm starting to go a bit stir crazy). All in all, it's going well.  I asked her to take another set of photos of me for the file.  When Walter and I had the initial consultation, Dr. Stacey only had before and after photos, but no in-process photos.  It would have definitely helped me to see how things might have looked right after the mastectomies and throughout the process.  In the car ride home, I asked Walter if it was weird that I volunteered to be photographed. He said, "well, you've always been an exhibitionist".  Yup, that's how most describe me....flashy.  Ha!

I'm still a little freaked out from the pathology report.  It makes me so nervous for other women that are in a high-risk category like me.  It makes me even more nervous for women that aren't watching out for the risk.  I don't want to be in fear of it, but at the same time, the consequences are so severe for young women and their families.  So many advances have been made in the twenty years I have been dealing with the topic of breast cancer.  I'm ready for the next twenty years and to see this disease and many others eradicated, either through a cure or a clear and exact path to prevention.

Funny thing from yesterday:
I received a refund from the surgery center.  They said that the estimate I paid earlier was based on a full C cup size and since I was a "nearly B", a refund was due.




I did receive a refund due to overpayment , but no reason was given.  That would have been hilarious!

Wednesday, March 13, 2013

Good job EBJ, good job.

My lead doctor, Dr. Cross called yesterday evening while we were on our way home from soccer (yeah!  I made it through 40 minutes of watching Scout's soccer practice/game!).  My pathology results came back.  

Whoa.
Eek.
Scary.
Whew.

They found cancer on the left side (I was diagnosed for cancer on the right) and another invasive cancer on the right.  Thankfully, everything they found was still very small and the margins of the surgery are good.  Dr. Cross said that if we had waited a year, the treatment regime would have much different.  He is still going to have me visit with an oncologist and then we will work with my gynecologist to determine the best time to have my ovaries removed.  But, no chemo and no radiation!

The pathology report affirmed my aggressive and dedicated screening the last eight years.  At times it would have been very easy to skip a test or just push it off until later.  Many times I had to explain myself over and over as to why someone in their mid-twenties wanted to have a mammogram or MRI.  All of the medical professionals have been great, but no one can advocate for your health like you.  How easy it would have been to use the funds spent on these tests to go skiing for a week or fly to Paris.  But I stuck with it.  I kept going and I kept advocating for my long-term health.  

So, pat on the back.  Good job EBJ.  You pulled them on and you pushed forward.  

Funny conversation with Scout:
Scout came home for the first time since my surgery and she had a lot of questions (not as many as i expected) about the surgery and my drains, etc.  When I told her that I was going to  the doctor today and that he would remove some of my drains, she asked if it would hurt.  I told her it probably would, but for her not to worry.  She said, "well Mommy I don't think it'll hurt more than that time I had that splinter."  I hope she is correct.  I hope the pain of them yanking 5-6 inches of surgical tubing out from under my skin is comparable to a splinter.

I hope everyone has a great Wednesday!

Monday, March 11, 2013

Your Card, My Lady

After a few more days of recovery, things are going well.  I kind of feel like a Tyrannosaurus rex roving around the house, reaching for things.  Walter would probably also say that my demeanor resembles the dinosaur.  He doesn't think that I'm the easiest of patients and blames it partly on my countless hours of Downton Abbey watching.  I would like to refer to him as "Jennings" and would like for him to refer to me as "My Lady".  It hasn't quite caught on like I would have hoped.

It came in the mail.  I'm so excited to discover its benefits.  Only a select few have them.  Curious?  Jealous?  You should be.....

Yesterday I received my members only card for the Natrelle Style 133V Series Tissue Expander Matrix.  Yup, that's right....the expander implants came with their own card.  I didn't receive the list of establishments where it's accepted, but you know I'll be flashing it around town.  (I actually think I'm supposed to carry it so I don't end up in the tank at the airport since the expanders have metal ports and can set off the screening machines.)

Still waiting to hear about my pathology report.  Keeping my fingers crossed for a good report.

Funny, Ha Ha or Funny Sad?
My cousin and I used to play this game.  It's a sick game, but that sort speaks to our senses of humor.  So, here's the question, "Is it funny ha ha or funny sad that the last retail establishment I went to before my mastectomies was Victoria's Secret?"  I personally think it  is funny ha ha, but that's just me.

Thanks to all for the sweets notes, texts, emails, etc. I really appreciate you!

Thursday, March 7, 2013

Urine luck!

I'm home and in my own bed!

The surgeries went well and my sweet little nurse, Leeanne, said I was her favorite patient this week (she didn't mention it was a short week).  Both Dr. Cross and Dr. Stacey are happy with how everything went and how my incisions look.  I've been given very specific instructions for recovery and Walter is making me adhere to them (think, nurse Cratchit).

The pain is mostly dull and achy and everything is tight, but it's tolerable.  I'm trying very hard to not use my arms for any pushing or pulling, as that makes the drainage increase and the healing go slower.  It'll be a fun couple of weeks.

I haven't spent much time checking out the surgeons' handiwork, but I'd compare them to two small flat crab cakes.  Dr. Stacey said that it'll probably take about three months before I have the exchange surgery to install the silicon implants.  Lots of office visits the next few months.

Although the last couple of days have not been a cake walk, they were ok.  I had great support from my family and my sweet sister/friend, April, sat with me last night at the hospital.  We had a good time catching up and laughing.  When the night nurse came out of the bathroom after recording my pee collection, he said, "You're in luck, we can remove your IV."  April and I looked at each other and said, "Urine luck?"  Who doesn't love a good pun?

So, my hope and prayer is for a good recovery, free from infection and a clean pathology report.

Thank you to everyone that sent me sweet words of encouragement, prayers, wishes, flowers, cookies, fruit, etc.  I felt/feel incredibly loved and supported.  I love you all!

Tuesday, March 5, 2013

Ready For My Close-Up

Front closure pajamas and tops.  
  Check.
Comfy new sheets.  
  Check.
Microwave (haven't had one in eleven years).  
  Check.
Stool softeners and probiotics.
  Check.
DVDs and new Netflix subscription.  
  Check.
Meal train for the next few weeks.  
  Check.
Hugs.  
  Check.
Prayers.  
  Check.
Laughs.  
  Check.
Tears. 
   Check.

I guess I'm as ready as I can be.  I really enjoyed time with family this weekend.  My sister and I had a giggly time last night casting a plaster cast of my breasts.  Not sure what I'm going to do with it (it's staring at me right now from across the room), but if I was ever going to do one, last night was the night.  I also took some topless photos this weekend.  I had another survivor suggest that.  She said that there might be times when I might want to look back on what was.  Again, not sure what I'll do with them (anyone have Hugh's address), but I took them and will have them.

Why do all of this?  I don't know.  I don't know how I'm going to process everything to come. I may need some images to grieve over or to put into perspective the bigger picture.  It's not the breasts themselves, it's the larger issue that they represent.

We all have things that remind of us of our larger life issues.  Mine just happen to be "nearly B" sized.

Saturday, March 2, 2013

The Naomi's

"Ms. Jennings, your ovaries look beautiful."

Blush, blush.   How sweet of her.

Another attribute of carrying the BRCA II gene, is that you have a 26% chance of developing ovarian cancer by the age of seventy.  So last weekend when I had the house to myself and had a bit too much downtime to think, I convinced myself that I had ovarian cancer.  The symptoms of ovarian cancern are subtle and it's not something that is easily caught.  Many times, by the time you think something is wrong, the prognosis is not good.

But all is good.  They are beautiful and I can stop worrying about them for now.  I'm still probably going to lose them in a year or so.  Although, they are beautiful, no one likes them.  They are volatile and pose a threat.  They are like Naomi Campbell.  "Watch out bitch!  Don't make my ovaries come over there and smack you with this hotel phone!"   

Sorry, that seemed kind of funny to me.

More than likely around the same time I'm having my areoles tattooed back on (I hear that mint green is very popular this season), I'll be having a longer conversation with the team of doctors about the Naomi's and how they are trying to kill me.  Nothing like being thrown into menopause in my mid-thirties.  Woot, woot.

But all is good for now.  My mastectomies surgery is next week, the family is in town for some fun this weekend, one of my dear sweet besties has organized a meal train that should have us sitting fat and happy for the next few weeks, and I powered down everything  at the office.  I couldn't ask for a better family, team of doctors, coworkers and friends.  I appreciate each and everyone of you and thank you for all that you are doing for me.