The good the bad, and the ugly

The Good

My husband - I can't say it enough, but he's awesome. He empties my drains, changes my bandages, gets up every four hours to help with pills, rearranged our bedroom to better accommodate me, really, he's been at my call every hour of the day. He's so good. Ladies, I hope you all find men as amazing as Jay.

Hannah's lasagna, the meal train started the other day with Hannah's lasagna. So delicious!  Thanks also to Elizabeth for the lemon chicken and Chelsie for the chicken and noodles and apple cobbler- my mom wants the recipe.

Alex - my little man comes home today! I'm so excited, I've missed him so much!

God - enough said.  Well maybe not, but all my praise to the big man upstairs, my strength is in Him!

The Bad

My Pride - I cannot shower by myself, I can't reach a cup, let alone pour my own juice, I can't brush my own hair, I can't dress myself, I can't, I can't ....  I know, I'm whining. It's difficult to rely on others for my basic needs. I'm so thankful for all the help, I'm working on accepting it with a little more grace.

The Ugly

Drains - I went home with two. I originally had four, one on each of my hips and one on the side of each breast. Drains suck. Having them removed sucks, having two still in sucks more. They look gross, they have to be cleaned and emptied, I have to clip them to my shirt, they have to be attached to a rope around my neck while I shower. The drain sites themselves are uncomfortable to say the least.   Drains suck. 

Home!!

This morning they told Cassie that she would be going home.  And by noon, we were out of the hospital and on our way home. 

We picked up the meds, had lunch, and now Cassie is resting in our own bed at home.  It is a great relief to have that phase of the recovery complete.  

I'm back!

People who have this surgery often refer to the surgery as being on the other side. I always thought that was very dramatic. It's not. The last 5 days have been the most physically and mentally trying of my life.  "The other side" is truly the most apt way to describe it.

It's really hard to put the past week into words and really, that'd require a lot of words.  I'm sure I'll remember more as time passes but for now,  I think I'll just give you the highlights.

12 hour surgery

I never understood why everyone was concerned about the length of my surgery. I mean, don't they do 20 hour surgeries on Grey's Anatomy every week?  Perhaps the gambit of prep-op tests should have tipped me.  To me, it felt like a really long nap. I was asleep by 745am and was awake just after 10pm.  When I awoke, I heard the team around me talking about the Pacers playoff game and then it dawned on me that an entire day had gone by.  That's a long time. My husband had spent just under 16 hours in the waiting room. 

Physically, a super long surgery is also "no-joke."  Breathing is difficult, regaining your mental faculties, etc. it was rough.

Valium

Holy balls Valium is crazy stuff. I've taken it twice while in the hospital.  The plastics team suggested it when I developed an incredible tightness in my chest...like someone was ruthlessly yanking on my frankenboobies. Valium calms down that sensation and really, Valium knocks me out LL cool J style. Guaranteed nap time after a Valium.

Frankenboobies 

This is the affectionate name I've given my new girls. It's not that they are crazy ugly, they are actually quite beautifully shaped...and perky. I do, however, have serious scars right now. I still have some purple drawings everywhere too. The scars will fade and eventually the sharpie will wash off.   I have very little feeling/sensation in them. I also have no problem showing the girls to people. I no longer have nipples so I'm pretty sure I'm allowed to walk around topless now! (3d nipple tattoos to come in about a year or so!) I guess you could say, with the new "girls" I'm a bit less reserved and feel like after what I've been through, they ought to be shown off!  The last day or so, in the hospital, I'd taken to going topless. After they removed my bandages the gown was irritating so I'd just gotten rid of all tops. Moral of the story, if you plan to visit, I'll likely offer you a peak, after all , they are just my frankenboobies!

My friends and family. 

My first day of recovery was rough, figuring out pain control etc.  Berkley, my best friend-I've spoken of her before, is a nurse in dc, and because she likes an extra hard challenge, is finishing up her last semester of a nurse anesthesists degree. Well Berk couldn't make it here so she was constantly talking with Jay and my mom, having them send pictures if monitors and at one point, had a very aggressive "mama bear" moment and managed to take care of me by having some "chats" with my entire care team about my pain management.  Berk, I know it killed you not to be here but I get it and I love you and can't wait to see you in a few weeks!

Secondly, my local girls. Thanks so much! Your texts, visits, etc. thanks for being my support network! I look forward to many lazy days on my bed watching movies with you ladies!

To all my other family and friends, thanks for all your texts, emails, calls,  etc. 

A special thanks to my mom for all her work too!

My husband 

Not sure where to begin. Jay you are so amazing. I wish I could describe every instance where I was thankful to have you.  I know it is tough for you to see me in pain. It'll only get better. Thank you for being so strong, for supporting me, for tending to my every pillow adjustment, for bathing me, and for trying so hard to do my hair!  I truly love you more every day, I'm so lucky to have found such an amazing partner in you. I love you handsome husband!

Day 5

There was a lot of progress today, but it came with some pain. 

The Physical Therapy people came by and had Cassie practice stairs.  They wanted to make sure she can get up and down before she goes home.  She was able to go up an entire flight, but by the time we got back to the room, she was pretty exhausted and in significant pain. 

Of course, just a few hours earlier, they had taken away the PCA (pain button of Dilaudid). They attempted an IV shot of the same to help with the pain, but her IV was no longer working, so they needed to start a new one.  Nobody was able to find a vein, so she had to do take this extra pain without help.  It took a couple of hours to get an ultrasound tech to start a new IV using the ultrasound machine.  So, today's progress came with lots of pain.  

The medications they have her on are keeping her pretty sleepy, so she has been drifting in and out this evening. 

More of the monitors were removed today, as were all the bandages.  They are saying there is a chance she will go home tomorrow.  

Day 4

I forgot to update again last night. 

There really hasn't been much to report.  Cassie has been getting progressively better since yesterday.  The pain is still there of course, but seems to be well controlled by the medications.  She has been eating well and the doctors and staff are all satisfied that things are going well.  

She has gone on a couple of walks now and used the real toilet twice now.  (They give you a bedside commode-basically a bucket in a chair-at first). But now she feels like a big girl who can use the grown-up potty.  

Occupational Therapy came by today and had her do some exercises like getting in and out of a flat bed, walking, etc.  All in preparation for having to do this stuff at home on her own later.   They gave her one of those reacher things like old people have. 

After all that excitement she's pretty tired so she's taking a nap now. 

Day 3

So far today is going well.  Cassie got more sleep last night and has been in pretty good spirits today. 

She had a sponge bath this morning and fresh sheets and such. 

Her pain is fairly under control with the meds, though they tend to wear off just a bit before the next dose is due.  

Some of the girls from small group came by for a little bit. It was nice to have visitors. 

We went for a walk around the floor a few minutes ago.  That wore her out so she's getting ready to take a nap now. 

Ill update again this evening. 

Day 2 - 6:00 pm

Cassie is doing considerably better.  They removed the 2nd IV line, which had been painful. Now she just has the one that provides the pain medication.  

The pain pills also helped a lot and she's now more comfortable.  She is eating her dinner on her own and eating well. 

She's now sitting in the chair and has been off the oxygen for a couple of hours. 

Day 2 - 2:30pm

Cassie is resting relatively comfortably in her room.  Her heart rate seems a little high, but the doctors are not too concerned.  They are keeping her oxygen levels in check by providing additional O2 when she sleeps.  

 

Both surgeons came in to see her and said everything looks good with the wounds. 

She's had some pain that makes it hard to get comfortable, but the Vicodin seems to be kicking in and helping her sleep. 

Alex's Cars blanket is keeping her warm. 

 

6:30 am

Overnight the nurses have been coming in every hour to check on Cassie's status.  She has gotten some sleep in between so she is more alert now.  They were able to remove her catheter just now.  All good, and progressing well. 

11:45pm

Finally got to go back to Cassie's room.  She is awake and talking but still groggy. The first thing she asked me is Did the Pacers win?   Not sure if that was the morphine talking or her being awake enough to care. 

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Thanks again to everyone for your thoughts and prayers.

Done!!

Surgery is complete. Just spoke to the plastic surgeons.  There were no complications, just time consuming to attach all the blood vessels. 

We should be able to see her in about an hour. 

Closing

They are now closing. Surgery should be complete very soon.

7:30pm

Latest update is that they have made significant progress with the flap.   They should be ready to close soon.  The surgery is on schedule and will hopefully complete within the next hour.

3:30pm

No changes since the last update.  The nurse just came by with her regular update, but there was nothing new to report.  They are still working under the microscope on connecting all the various blood vessels. 

Cassie's vitals are stable. And all is calm in the OR. 

12:45pm

We are about four hours into the surgery right now.  The latest update is they are working on the reconstruction portion of the surgery.  They expect that to take at least another 5 or 6 hours, and could be even 8 more.  

The plastic surgeon said the time it takes has no correlation to whether it is going well or not.  Some just take longer than others. 

Another update

Spoke to Dr Bowling, the awesome breast surgeon.  She finished her part. All went well. Nothing abnormal and no suspect lymph nodes to remove.  So she has turned things over to Dr Cacioppo who is the plastic surgeon. He will be working for a while so there won't be much to update for the next several hours.

Update

The breast surgeon should be out shortly with an update.  The nurse who was in 20 minutes ago said they had completed the removal of the left breast and were working on the right.  The plastic surgeon will then start on the belly part where he will remove the tissue for the reconstruction.  More to come soon...

Surgery started

They started at 8:43. No issues so far. 

Surgery Day

After some fun with a Sharpie, and meeting with every doctor and nurse who will participate in the surgery, they took Cassie back to the OR. 

It will be a long day of waiting for me.  They promise to update regularly, and I have a pager they will buzz if they have any new information. 

I will keep posting throughout the day.  Thank you all for your prayers. 

Ready.

Having breasts do not define my role as a woman, a mother, or a wife. They certainly were an important part of me being a mother and I'm fairly certain they played a decent role in attracting Jay, but boobs are just that.  They are an accessory. Today, I'm trading mine in.  The old ones were toxic. They threatened my womanhood, my ability to mother and to be a wife.

We are on our way to the hospital now. I'd be lying if I said I wasn't nervous. I'm nervous but I'm ready. I'm ready to be tough, ready to battle, ready to take control of my genes.

One more day

I feel like this week has flown by.  I honestly expected it to crawl by and i be a hot mess who consumes excessive amounts of mommy juice.  Luckily, only the mommy juice applies...just kidding...kinda.  In an effort to keep my nerves at bay I've tried to keep myself busy. Naturally, I have about 5 working to-do lists. Tuesday night Jay and I had a date night. Last night was a family date night!  Tonight will be kept low-key. My mom should be here and we are having friends over (Joe, Ashley and their kiddo Leona). Alex and leona are like-size buddies who bith like to wrestle, its always a good time.  Ashley claims she can braid hair so she's gonna braid mine in an effort to help me look presentable Friday.  Having two  toddlers around will help keep my mind off Friday.   Surgery is Friday morning. We will be at the hospital by 530 am.  Jay will post updates on the blog and Facebook. And I'll probably post a few while in the hospital. I may have Jay look them over first to insure the morphine doesn't cause any crazy posts.  In the meantime, keep the prayers coming!

So I must say a special thank you to my small group. This weekend we had a "bye bye boobies" party.   It was one of the best nights out I've had in a long time and it was exactly what I needed.  We had the gathering at Hooters and played inappropriate games for inappropriate  boobie prizes, and had boobie cupcakes. We laughed, toasted my cleavage, and laughed more. It was truly a Fantastic night!

Now, those of you who are not familiar with my small group need to understand that we are not your traditional group.  This small group once spent half an hour comparing tattoos!  God truly had a plan in mind when he put our group together and a day doesn't go by that I don't give thanks for these people.  (Picture below)

Also, a big thanks to my church family at connection pointe!  My blog has made it's rounds and complete strangers have signed up for the meal train or donated money to it. You don't know me or my boys but I thank you from the bottom of my heart!

Brave - Not Me

I want to start by saying that I am so incredibly blessed to have such supporting and amazing people in my life. As I've said before I was nervous to take this journey public for fear that I may pay too much attention to the nay-sayers.  I made my first post nervously, completely unsure of how my story, my reality, would be received. To say that I was overwhelmed is an understatement. So many people posted on Facebook, called, texted, etc . And you all were so unbelievably kind.

So it seems I have fooled quite a few of you into thinking I'm brave. Bahahahaha. Jay and I were having a talk about this the other night and I told him that I really wish people would stop using that word to describe me. He also uses that word despite my protests but whatever. Truly, I don't feel brave. I think a lot of it has to do with how scared I am. I'm scared of so many things as it relates to this surgery, this decision. I'm scared of the pain, the recovery time, and the financial strain my time off work could cause. I'm scared that I'll struggle with body image issues, that my husband won't look at me the same way or touch me the same way. I'm scare of how this surgery could affect my son.  I won't be allowed to pick him for several months.  The point is, and I'm sure you've gotten it by now, I'm scared. I'm not brave.

The other night on the phone with Berkley (my super awesome best friend) we were chatting about her coming to visit/help in June, after the surgery, and for some reason, she called me brave. Now, I was talking to Berkley, so I can't say "not you too, please quit saying that word " because then that'd spark a chat- the long kind - that results in tears and Oreos. Instead, I responded with "I really don't feel that way, but thank you."


So to those of you who used that term, I thank you from the very bottom of my heart but truly, I don't deserve it. I'm just a mom, wife, woman. I've made this decision to be proactive with my breast health because I want to make sure that I can continue to be those things! So please save the brave term for those who deserve it, those women who are battling cancer, getting chemo, and still wear a smile on their faces for their family.

Glowing in the Dark

Be advised: This isn't a deep, emotionally raw post. I'm just not capable of doing those every time! Consider this more of an update.

I had a ton of pre-op tests this past week. I'm fairly certain that I glow in the dark now because they took every sort of picture they possibly could of my chest area.  They also took enough blood to feed a vampire family for a week.  I had to fast for one of the tests and then when it came time for another, they had trouble getting a vein and decided I needed to eat/drink something.  I was offered a Dr. Pepper and some graham crackers. Dr. pepper was great but I'm sorry, I'm 30, not 3. If you are gonna offer me a graham cracker there had better be some nutella with it!  The happy news is all the tests are good to go and I am healthy enough to sustain a 10-12 hour surgery!

On a side note, I was asked 4 times if I was pregnant, 6 times if you count the "are you sure" that usually followed.  If you read my previous post, you know how much I love being asked this question. The reason I find it so amusing is that these people have my chart in front of them. Not only that, this is the same hospital, where not even 2 months ago, I had my hysterectomy. 

So anyhow, a lot of you have been asking how you can help and I'll be honest, I'm not good with asking for accepting help.  My friend Hannah - who is super awesome - has set up a meal train account.  If you are local and want to help, this is a great way to do so. Very frankly, my biggest concern during this whole process isn't me, its my boys. Jay and Alex collectively make up "the boys" and ensuring they are taken care of is by far my biggest concern.   The meal train is an awesome way to help because we all know that if it doesn't involve a grill, Jay doesn't cook.  I've posted the link if you'd like to participate. 

http://www.mealtrain.com/?id=m92h5i518r5t

My least favorite small talk

When did it become appropriate for strangers to ask you extremely personal and intimate question while in line at the grocery store?  This was a recent conversation I had with a very nosy woman.  "What a beautiful little boy!". Me "Yes, he's  my handsome little man. I adore him." Nosy lady - " How old is he? When does he get a little brother or sister to play with?"   From that point on in the conversation, there really is no good way to proceed.  Trust me, I've tried the polite approach of "well, we're plenty busy with this little one".  I usually get the  "oh, but he needs a brother or sister, everyone needs a playmate."  Sigh. I've also tried the blunt route wherein I simply tell them that I can't have any more kids.  This usually causes them to pause (I like to think of it as them reloading because I can actually see them processing my response and formulating an even more inappropriate question) and then ask an equally intrusive question such as "why not" or my personal favorite-  "what's wrong with you?"

I sometimes joke that this is my own fault...if Jay and I hadn't made such a gorgeous child, no one would care if we had another.   Well, fact is, we will not have another, at least not one that is biologically ours.

I, like many people knew that BRCA meant a significantly elevated likelihood of breast cancer but I had no idea that the BRCA mutation also carried a 40% lifetime risk of ovarian cancer (normal population is below 1%). I didn't know much about ovarian cancer except that it was particularly fatal. So, after I received my BRCA result and was assembling my phenomenal team of doctors, one of my first stops was with an oncologist to discuss my ovaries. I'll be honest, I could have paid better attention in health class - I mean I know what needs to go where but my knowledge doesn't go much further- but I had no idea that my ovaries also played a pivotal role in my breast health. My particular BRCA mutation is directly linked to an estrogen feeding type of cancer. What this really means is, both my ovaries and boobs have a hit out on me.  The typical recommendation for patients with my risk factors is to undergo a hysterectomy upon completing your family.

Jay and I spent a lot of time discussing this surgery. Was our family complete?   In the end, we're not positive. But we do know that if we feel we need to add to our family, we have no doubt that adoption will be a great avenue for us.   So although it was a 60 minute, outpatient surgery, for me, that surgery was a much bigger deal than the mastectomy. Because of my family history, I've always lived with the "when - not if" perspective in regards to breast cancer, so really, I knew a mastectomy was in my future. But a hysterectomy? At 30?  I found a awesome gynecological oncologist who was far more patient with me and my questions than I deserved.  Truthfully, it was an emotional roller coaster. I realized I was more attached to my ovaries and fallopian tubes than I was to my breasts.  It wasn't that I was sad about not having more kids, I was sad about losing the capability to have kids. I was also terrified. I was scared of menopause. Surgically induced menopause can start the same day of the surgery. I was scared of all the unpleasant symptoms I read about: headaches, mood swings, hot flashes, night sweats, decrease in sex drive and a few other extremely unpleasant sounding ones. To clarify, I wasn't scared of the symptoms of menopause - after all, menopause is inevitable - I was scared to put my husband through all that.  Jay deserves some sort of husband medal.  He's been unwavering in his support of me.  He continues to insist that he's good with it all. In relation to the hysterectomy, he jokes that he is lucky because he is skipping 20 years of birth control and PMS. He's all mine ladies!

All in all, I really am in a good place with all these drastic life changes.  Fact of the matter is, I would do anything to ensure that I get to spend as much time as possible with Jay and Alex. In the end, they are my reason for everything.  So, they can take my ovaries, my fallopian tubes, and even my boobs but I'm keeping my boys!

A long time coming....

On May 24th, at 7:30 a.m., I will have a prophylactic bilateral mastectomy. On May 24th, I will take control of my breast health. Most importantly, I will ensure that breast cancer doesn't take me away from my son and husband.

I do not have cancer. I do, however, have the BRCA mutation. This means I have a nearly 90% likelihood of developing breast cancer and 40+% of ovarian cancer. I have a significant family history with breast cancer effecting both sides of my family. The decision to have a mastectomy was not difficult. This surgery will take my likelihood of developing breast cancer from nearly 90% to below 1%. I've always lived in a state of not if I get breast cancer but when I get breast cancer. I've had mammograms since I was 28. My first one was irregular and required a follow-up. From then on, I lived in a state of crippling fear every time I was due for another...always wondering, is this the time they'll find cancer? After discussions with my gynecologist, he referred me to a genetic counselor, and on October 11, 2012 - Jay's birthday - I got my positive BRCA result. There wasn't much discussion. Jay and I had already decided our plan of attack in the event of a positive result. Then began a whirlwind of appointments with a team of doctors. 4 weeks ago, I had a oopherectomy, a partial hysterectomy to remove my Fallopian tubes and ovaries. Yes, this means no more kids for us and even more fantastic, I am in full blown menopause. All recovered from that and so now here we are, 3 weeks away from the big one. I'm choosing to have my reconstruction in the same surgery. I will be have a DIEP flap reconstruction. In simple terms, the plastic surgeon will make my new breasts out of stomach fat, essentially giving me a tummy tuck. This is not a simple reconstruction, however, it is the one that will require the least amount of maintenance over my lifetime, among many other benefits.

The surgery itself is no joke. I'll be under for 10-12 hours. I'll be in the hospital for 5-8 days. I'll likely be sent home with numerous drains and miss 5-8 weeks of work. I do not doubt the impact this will have on my life. I'm acutely aware of the burden this will put on my husband and the confusion it will cause my son. This is a decision we made as a family and something that we have prayed about a great deal.

It's funny to think that just last week, I had no intention of making my surgery public. Of course, those closest to me knew...my husband, parents, grandparents, my very close friends, and my small group at church. Strangely, the closer I get to my surgery date, the more empowered I feel. Don't get me wrong, I'm still terrified. However, more now than ever, I have no doubt that this surgery is the best choice for me.

I'd toyed with the idea of a blog, more so as a journal than a public forum. Every time I nearly started one, I stopped. At 30, it's sad to admit that I still care what other people think. I think a part of me was afraid that I'd hear too many negative opinions of my decision and that I would start to question myself. Well, that's not happening. Over the past several months, I've read so many blogs and boards on this topic, some truly phenomenal. I admired these women for posting their fears, triumphs, disappointments, and even pictures. It took me a bit to realize that these women did these blogs for not only themselves, but also for people like me, women who want to hear the good the bad and the ugly. So, while this blog is for me (I really need the catharsis of journaling) I'm also making it public in hope that I may encourage, empower, or just make someone giggle.

So this is my blog. I make no promises that it will be grammatically correct or properly punctuated - hell, it may not always make a ton of sense. Those of you who know me know that I sometimes lack a filter, so please bear with me and my train-of-thought writing. Thanks for reading!