Pressing Pause

So the surgeon was right - just days after removing the tissue expanders and I feel human again. Now I just have some large incisions that are stinging and twitching and burning, but all of the aches and pains have gone away.  I even had those obnoxious mastectomy drains removed! My body feels so free without all of the tubes and extra 'equipment' hanging around. 

We've switched up the antibiotics a couple times to find what will best fend off infection I had developed with the expanders in.  As long as I follow through on treatment, I shouldn't have any more problems with that.  I also have ongoing iron infusions scheduled. I'm looking forward to an overall better health, and I know that it is on its way!

It's still challenging to look in the mirror and look at what's left of me. All I have is a little bit of loose skin, not even enough to fill an A cup. The incision scars are large and unsightly. It sometimes feels disheartening, but then I stop and remember the purpose. I won this battle! Cancer won't get me there! 

Reconstruction will wait. The surgeon says 6-9 months, but realistically I think life will push it to 12-18 months. With baby #3 arriving in the spring, I just don't see it being feasible to be down for too long. I had wanted to get my own stuff over with now, so I wouldn't have any problems snuggling the new baby. We didn't expect to have so many complications. Maybe next winter, or maybe even the summer after that. For now we can focus on getting the anemia under control so my body is strong enough for another series of procedures. I'm really not in a hurry, though. 

Thank you all again for the overwhelming support. We have truly appreciated the thoughts, prayers, messages, meals, childcare, and every other encouraging and supportive act. 

I need to take it easy for the rest of the week, but I fully anticipate being back at work next Monday. Pressing pause on this journey, and moving forward with life.

Flat, flat, flat.

Yesterday was a whirlwind, to say the least.

Kimberly texted an update to the surgeon early in the morning. She told her my fever was gone, and that I had a lot more energy because I'd had the iron infusion. She reported that I still had the stinging and burning on the right boob and also updated with the fact that I was now feeling some of those same symptoms on the left side, as well.

The surgeon didn't seem overly concerned and texted back to go ahead and let me eat. She said that even if I was going to have surgery, it wouldn't be until late in the day because she had a full schedule. 

I had a low key, lazy morning. I enjoyed coffee and a nice visit with a friend and then headed into my appointment. I really had convinced myself that things were getting better and I wasn't going to be having a second operation. The doctor asked how I was feeling, and I was honest... I was feeling less sick, I had more energy, but the pain was awful. The burning and stinging from the drain tubes plus the sensitivity of the infected area were just unbearable.

She said I should feel better by now. She said the infection didn't look too bad, but that didn't mean it wouldn't get worse. She gave me the option to wait it out, or to pull the expanders. She said if we pull the expanders now, I would feel better by Monday.

I have been so weak for too long. Healing has been so slow... too slow.  So we decided that it is time for me to feel better. It was nice that I'd had the option to try and begin immediate reconstruction, but my body clearly wasn't ready. I will spend the next 6-9 months healing from the mastectomy and getting the anemia under control. Then we will revisit reconstruction when my body is stronger.

Part of me feels like I quit and gave up. I wish I could have been strong enough. But I know that the most important thing is that now that the boobs are gone, the risk of breast cancer is nearly gone as well. 

She told me at 2PM that surgery to remove the tissue expanders would be at 7PM, so I went home, took a quick shower, and headed back to the hospital. Since I couldn't eat or drink, I hadn't taken any medication and was really hurting. The nurses were quick and generous with the meds to get me comfortable. 

The procedure was short and we were home by 9:30. After a couple pain pills, I slept well and woke up in less pain and discomfort than I've had in weeks. There is some stinging and burning at the incision site, but the Norco takes care of that pretty well. The old drains are gone, but new ones were placed. She said this set should only have to be in for a couple days. I see her again on Tuesday and am totally looking forward to be rid of these obnoxious little balls of grossness.

My MD has me set up with weekly iron infusions, and I'm taking some supplements to help my body hold on to the iron it gets. The weirdest thing is how FLAT my chest is now! It's almost concave! At least with the tissue expanders, it made it look like I had something there. Now it's just NOTHING. Time to round up some kind of falsies so my clothes will at least fit me right!

I've said it before, but I can't say enough how incredibly thankful for all of the love and support we've gotten throughout this crazy month. The meals, the prayers and well wishes, and the coffee visits... it all means the world to us.  

Here's to hoping that we're now really, truly on the way to recovery.

No!!!

And the bad news keeps rolling in. Yesterday, I developed a new pain. It felt like there was a knife digging into my right shoulder blade. The area around my right drainage tube was swollen and inflamed. The whole area was on fire and stinging and tender to the touch, all new sensations. I felt like I was getting a fever because I had the chills and my skin was aching all over.

Kimber popped into my surgeon's office to show her a picture of the swelling (perk of a spouse who works in a hospital) The doctor said I should be seen right away. Turns out, I have an infection developing. My body still doesn't have enough umph because of the anemia and can't heal itself from the surgery, and so it certainly doesn't have the ability to fight off an infection. 

image from: http://clairesholisticpursuits.com/wp-content/uploads/2014/01/Bandaid.jpg

I got some IV iron, fluid, and also started some antibiotics right away. And more pain pills, thank God. I am at home today but she wanted an update today so Kimberly exchanged some texts with her (another perk of a spouse who works in the hospital). I have to abstain from eating or drinking tomorrow, because if I still haven't improved, I will need to have another surgery tomorrow to remove the tissue expander so that the infection can heal and doesn't get any worse. It won't be as involved of a procedure as the initial mastectomy, but it does mean that the entire reconstruction process will be delayed by 6-9 months. 

All of this trouble... the excessive pain, the slow healing, now the infection - it's all likely because of the anemia. We knew it was a problem going in and tried to take the preventative measures, but the reality is that I probably wasn't ready for surgery. The overall blood numbers improved with the infusions in the weeks leading up to the initial operation, but my body just can't hold on to the iron. I guess I need to eat more beef.

image from: http://stepoutbuffalo.com/wp-content/uploads/2013/11/steak-pic.jpg

It wasn't supposed to happen this way. I pictured being down for a couple of weeks and then life getting pretty much back to normal with only the 'no heavy lifting' restriction in place. I didn't realize that three weeks post-op I would still be be stuck in bed and heavily medicated. I didn't realize my body would refuse to heal to the point of now getting infected. I certainly didn't predict that I would still be useless around the house and unable to help with the kids because they are crazy maniacs who jump all over me. 

It's so frustrating. Right now I am on antibiotics and have spent the majority of the day asleep. And now I'm feeling the same burning and stabbing/stinging on the other side, I hope that doesn't mean that the infection is on the other side, too. Praying that the drugs and the rest will be enough to keep me out of surgery tomorrow. 

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 :( 

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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.

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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.