On Healing.

I spent my day bored and lonely and annoyed that I didn't have any Starbucks, so those are all pretty certain signs that I must be feeling somewhat better in the big, physical picture.

Image from http://www.starbucksdrinks.com. 

The iron infusion helped for a few days, but the anemia is winning and my energy is already leaking away. I need to get with my regular MD and continue working on a long-term solution to this.

(Warning: a little bit of gross medical stuff ahead)

Still eagerly awaiting the removal of these nasty drains. Yesterday morning, I noticed some wetness/leakage at the painful point where one of the drainage tubes are stitched in place to insert my body. Kimber examined it and noticed a clot in the tube so she Googled 'mastectomy drain clots and leakage.' She was able to find out how to break it up and everything started flowing again. God bless the Internet. The whole area is tender and sore, but that is probably because of having to fuss around with it to work the clot out. Having a fluid build-up inside the area around the expander would be bad news, as the surgeon would have to pull it out until that cleared up, which would mean more surgery and put a major delay in overall healing and the reconstruction process. I will have these drains for at least another week. 

Sometimes I just stare in the mirror at what's left of me. The incisions are an ugly, wrinkly mess. The tissue expanders that were inserted at the time of surgery give the appearance that I still have some boob, but they are oddly shaped and are pretty much up inside my armpits. It's just all so wrinkled and dimpled and misshapen and unflattering. I know this is just phase one of a larger process and that in the end, things will have a much more natural appearance, but for now, it all just feels so ugly. 

I felt and expressed my first bits of remorse this morning. Not about having the surgery, but about the timing of it. Pregnant Kimberly is working so hard and she is so tired and having a ton of pain in her back. I hate feeling so dependent on her. She's having to deal with these wild toddlers and trying to keep up on laundry and now going to work again. I feel like such a burden. I know both she and my mom are totally exhausted from taking care of the kids and of me, and I am feeling so worthless to them. I am just not used to being in this position. 

Kimber told me that she knows if I had not done it now, we would have continued to find reason after reason to wait, likely until the kids are all in school, and that would have been be 5-6 years from now. With each passing year, it would have been so much more likely that cancer would be the one to win. I know she is right. If we hadn't have made this a priority, it would have been easy to keep putting it off. 

The lethargy from the anemia, these feelings of worthlessness at home, missing being able to hold my babies and their big, loving hugs, all compounded by my heart aching for the struggles of people I care about... It all has me feeling quite blue. 

So blessed. So loved. I know. I know. 

I just can't shake the sadness. 

Iron? Who knew?

It's amazing what a body can do when it has the fuel it needs. The iron infusion has made a huge difference in my energy. I still have a lot of pain, but I feel better than I have since surgery. 

I am in clothes that are NOT pajamas for the first time since I left the hospital ten days ago. We also left the house! It hurts to move, it hurts to breathe, it hurts to sit, it hurts to stand. The muscle relaxers have me totally wobbly and uncoordinated, but whatever, right? But it's time to move forward. Don't worry, I am not pushing it, using a wheelchair, and making my pregnant wife do all of the heavy lifting, lol.

Kimber took me to Supercuts to have my hair washed and rebraided, because full showers will continue to be a challenge as long as I still have these drains.

Oh these drains. 

They are painful and gross and always in the way. And while I know they are necessary, they are AWFUL. They likely won't be coming out for another 10 days or so :( 

---

My darling wife... After my hair was washed, she asked if I wanted to grab something to eat since we were already out. We looked at what was nearby and tossed around a couple ideas. Then she said, "Don't worry honey, I won't take you to Hooters."

Oh, she is so considerate that way. 

Bad News, and Good News?

I wish I could give some joyful positive update, but I am just not there at all. Here we are, eight days out of surgery and I am not doing any better. Truthfully, I am getting worse. I felt better three days ago than I do right now.  The pain is so awful. Sleep has been a struggle, and when I do manage to rest, Kimber says I whimper in pain. The pills help a bit, but really they just make me feel stupid and uncoordinated.

It hurts so bad.

So I left the house yesterday for the first time since surgery.  I had a post op appointment with the surgeon. When she walked in, she asked how I was. But before I could answer she said,  'I bet you feel like you got hit by a truck...'

Hit. The. Nail. On. The. Head.

She said some of my iron levels were so low they were immeasurable. The anemia was a known concern, which is why I had the series of infusions leading up to surgery. But apparently my body just doesn't have the reserves to focus on day to day 'getting by' along with the healing demands that have been put on it now,  which is why I still feel so awful.  

She gave me more meds, and the infusions start again today, along with some supplements that are supposed to make the iron bind/stick around for longer. Each infusion does make me feel better for a few days, but we do need to find a more long term solution besides sitting with an IV for two hours a week. 

Finding a positive? I know that today's infusion will give me 3-4 strong days. Maybe that will be enough to get me out of this recovery dip, and on the path to healing. At least I know there is a reason I am not getting better.

----

We are all still very thankful for those who continue to offer to bring by meals. It's been so helpful. Please contact Kimberly if that's something you would like to do.  My mom caught the girls' cold from last week and is exhausted. Kimberly is 5 1/2 months pregnant AND catching the cold AND waiting on me... so she is beyond exhausted. We are just trying to get by, and trying to maintain some normalcy for the girls. 

This hasn't at all turned out as we'd expected. I know there are so many things about this that are out of my control, but I keep disappointing myself over and over again, in so many ways. I had thought I would feel better by now, I had thought I would have the energy to at least get some of the online holiday shopping done. Everything is running behind. We're doing Christmas so absolutely bare-bones this year, I will be shocked if we even get the Christmas cards out in time.

I know things will get better. I know that these painful inconveniences are still much better than the potential alternatives that could include chemo and radiation and all of the realities there that have life threatening consequences.

Trying to find positives among this mountain of challenges that life keeps tossing my way. Prayers for your own woes. I know so many others are also dealing with health, holiday, and family stress, I wish I could be a better friend right now. And also prayers for the challenges you choose keep inside your heart (because we all have a ton of those, too!) 

Purpose. Trying to define/refine goals and priorities and the best places to put energy. 

What really matters? Love. 

"It's enough, just to find love. It's the only thing to be sure of." ~ H. Day

I get by with a little help from my friends (aka, one day at a time)

I have been home for five days now, and they have all been a huge blur. Trying to keep a balance of pain meds and muscle relaxers and anti-nausea pills and stool softeners, because well... you know. 

I think sometimes iPhones should have a 'breathalyzer' type device attached to them, so we don't humiliate ourselves too much while under the influence of... anything. Apologies to Facebook friends for the excessive details. 

The pain has been awful, but it is definitely getting better. I think today has been the first day that I haven't woken up in complete agony. I guess that's progress? 

Thankful for friends bringing food by, because it takes some pressure off of Kimber while she's busy trying to keep me comfortable and the children entertained. Please don't stop! It really is the greatest way to help right now. 

Also thankful for friends like Sierra and Rebecca who have taken the girls away for a few hours to give us all a chance to rest. The little ones know that I have 'boo boos', but at 2 and 4, they really have no clue how to be calm and respect personal space. P keeps asking to see my 'boo boo things' (referring to my mastectomy drains.) She says, 'Ewwww! Grossssss!' And then asks to see them again. The nasty drains don't come out for at least another week. That will be a wonderful day. 

I haven't shown them what's under the bandages yet, because really, I don't even like to see it myself. 

Temporary. Just a step along the greater path. 

And done.

I am completely, and joyfully overwhelmed by the amount of love, support, and encouragement that has been sent our way. It feels so wonderful to be swimming in this ocean of positive energy.

Some people choose to keep their medical procedures private, and I completely respect that. I have been making a lot of noise about my own journey with a purpose: I want people to learn that we can be empowered when it comes to our risk of cancer. Genetic testing can provide invaluable knowledge that allows us to take charge and make life altering, and potentially life saving choices.

If there is a strong history of breast cancer or other cancers in your family, please talk to your doctor and consider genetic counseling.

------

The procedure went well. The doctor removed all of the breast tissue, including my nipples. She tried to save as much skin as she could, because my poor skin doesn't have a lot of elasticity left from being so heavy for so much of my life. Saving the skin now will help with the reconstruction process.

The doctor said I woke up with a smile on my face, but my good mood faded as the anesthesia wore off. My first nurse in the recovery room was rather unpleasant and seriously lacked compassion. I was weeping because it hurt so bad, and she pretty much told me to be quiet. I was in a lot of pain, and frequently my body's natural response to pain is vomiting. My surgeon had told me that vomiting is like one of my greatest enemies right now, along with coughing and lifting. 

The grouchy nurse rounded up some anti-nausea meds, and that stopped the heaving. The pain is still awful though, like nothing I have ever known. I gave birth to Patten with no meds; not on purpose, but because that is just how it happened. I am HEAVILY MEDICATED with Norco and Dilaudid in the hospital right now, and the pain in my chest is still excruciating... worse than my drug-free labor with P!

My understanding is that the pain isn't from the incision, it's muscular pain. The tissue expanders that will make room for my implants down the road sometime were placed under the muscle, and it's the muscular pain that is ridiculous. They gave me a muscle relaxer down in the recovery room 12 hours ago, and that knocked me out. That was the last time I felt comfortable. It's 4AM and I haven't been able to sleep for more than 15 minutes at a time all night. 

I am scheduled to go home tomorrow (well, later today now, I suppose), and that kind of freaks me out. I do have a prescription for muscle relaxers there, so I am hoping that will make a difference. Know what else freaks me out? Both girls are sick. Coughing. Lol, great timing, right? Please pray that I don't catch their cooties. 

And know what ELSE freaks me out? I don't have any nipples. That's just... creepy. Does anyone remember the TV show Kyle XY? The main character didn't have a belly button and every time they showed his stomach, it seemed so unsettling. I HAVE NO NIPPLES!!! (I am sure that random fact is courtesy of the drugs, lol!) 

Thanks to everyone who has been so supportive. A few people have asked about stopping by. I have had visits from some of the people who are dearest to me, but really, I am not up for any more company at this point. If you want to help and are inclined, bringing by lunch or dinner in a couple days or early next week would be greatly appreciated. Coordinate that with Kimberly :)

Thank you all again, for being on this journey with me!

6 AM Details

It's surgery day! 

Comfy, button-up jammies, nothing to eat or drink. No shaving, no lotions, no deodorant, no makeup, no jewelry. Dealing with this mop on my head. 

Ready or not, here we go! 

24 Hours Out...

Here I am, 24 hours until surgery. I am sure there are things that I should be feeling, but all I really feel at the moment is a vapid numbness.

Have you ever found yourself in a situation, and had to really scratch your head as to how you ever ended up there? Living life means making choices. The series of choices that led me here though... Well, I just never could have imagined being in this place, in this moment.

No regrets though. None. 

I am so thankful for everyone who came out for my BoobDay party this weekend. It was so much fun to giggle and play with so many people who are so very dear to me. I am especially thankful for my sister Jamie for having made the trip to spend time with us. And I am also thankful for Rumchata.

And don't worry folks, THOSE pictures will never make their way on to the Internet!

Surgery is scheduled for 8:45 tomorrow morning at Kaiser. It's supposed to take about 3 hours. I will stay in the hospital for about 24 hours, and then will get sent home with bottles of Norco and Valium. Talk about numb, lol! 

My daughter Kansas has a cold and I am avoiding excessive contact with her, which is really, really hard! Any kind of respiratory situation like that would certainly delay surgery and that would be so difficult. I am so ready to get this over with and begin this new chapter, free of the worry of breast cancer!

Boys Get Breast Cancer, Too.

BRCA mutations also affect men. 

The average man has a .01% chance of getting breast cancer. A male with a BRCA mutation has up to an 8% risk. Also, men with the BRCA gene mutation have an elevated risk of other cancers, including prostate cancer and melanoma.

Men with the BRCA mutations can pass it on to their children. If a man carries a BRCA gene, their male and female children have a 50% chance of also carrying the gene.

Just like with women, men who have a strong family history of cancer, even in their female relatives, should consider being tested.

Read more about men and BRCA at FORCE.

Numbers

My order total at Carl's Jr. last night jumped out at me:

12.10

It's coming so soon. 8 days. One week from tomorrow.

I'm nervous, excited, anxious, but most of all... READY! I'm ready to get these ticking time bombs off of my chest. 

I had my final consult with the plastic surgeon today. The next time I see her, she'll probably be in surgical gowns and I'll be loopy and headed to a blissful anesthesia-induced slumber.

It just makes it all so real. In the appointment, she took some measurements and notes. She explained the procedure and the process of the next few months. We talked about after-care and pain management. She gave some alarming figures that in her experience, the first procedure only works correctly about 3 out of 5 times, and often the biggest complications come from when people ignore the 1/2-lb lift restriction in place for the first two weeks. Note to self: Don't lift ANYTHING! (Wait, how much does my iPhone weigh?!?)

I have been fighting off some anemia with weekly appointments at the infusion center, so we are waiting on some blood work to make sure my counts are up and I'm at my best for surgery and recovery. I get the blues a lot easier when my iron is low, and I DON'T need any of that.

Kimberly will have the first 10 days or so home with me. Hey, want to help out? Set up a night to bring dinner over. I'm the cook in this house and if I'm out of commission,  I have a feeling we're going to be eating a whole lot of Kraft Macaroni and Cheese. Also, come party it up with us on 12/6!!! Ask one of us for the details.