Aug 15, 2012 - Day # 8 - Silver linings

Ron couldn't believe how long they were) but I wanted to kiss her once they were out. She did pick up on the fact that I had an enormous amount of anxiety about this phase of the mastectomy process. I don't know if the constant crying was a dead give away or the not so suttle shallow fast paced breathing, particularly when she went to unwrap my surgical vest. 

Now to give you some background, up until this point I had been doing everything in my power to avoid looking at my scars. EVERYTHING to avoid it. Including one day when I was having a lot of extra pain at my drain sight, I sent Ron and my sister in on a scavenger hunt into the surgical vest to find the culprit. Ron has a flashlight, Amy had a map (me pointing and describing the location) while I had my eyes shut tighter than fort knox hyperventilating the entire time. You see, I have absolutely NO problem looking at your surgery wounds, your kid's scrapped up knee, my patient's chest drains, a stapled forehead....but when it comes to MY bandaid and bruises....I need a trashcan and quick! This is all new since the mastectomy. I was totally fine before. So boy were they my hero to volunteer to go in and see such a sight on my behalf. To give you some perspective, the surgeon said today that "you sure do have a mess in there". It's not pretty (but it will be one day).

Back to the story...she unwrapped my surgical vest to check the tissue and blood flow and I got huge praises that everything looked excellent where skin viability is concerned. It far exceeded her expectations. We don't have any skin loss so far. And that answers our third "please".

I was able to regain my composure when she strapped me back in and sealed me up tight. I could breath again. Until.......holy moly she broke my heart and told me that I could no longer wear the vest. I was NOT expecting that. How in the world am I going to go through the next several days without wearing a blind fold? I'm still mentally sorting through that. Pray people, pray! She also said that my anxiety level about the post mastectomy to pre reconstruction period was super high (I already knew that) and she really wanted me to find ways to vent that out. She said I need to just grieve. (I started that last night - see previous post). She said I need to get mad at the world, feel distraught, grieve the loss of my two members, and feel all the stages that come with a chaotic diagnosis or circumstance. She said I was trying to hold it all together and that was hurting me. So guess what, I now have formal approval to grieve. I don't have to hold it all together. I need to go through the feelings of it all. I'm such an overacheiver that I decided to at that very moment put grieving on the to-do list so I can make sure I do just that.

Ok, on to phase two. Spend the next 4 days getting used to this new body. I can shower! All my neighbors are grateful to hear that. On Monday morning I will have surgery number 2. Lead Plastic Surgeon is not really sure what he is going to do. He wants to get into the skin and see what the tissue of the chest wall looks like. I will either come out with temporary extenders in place or some form of an implant. I will know what is what when I wake up. Too funny. There are a few downsides:

1) I have to get the stinking drains put back in during surgery and they will stay in for that week. GRRR! Kick and scream

2) I should expect more pain from this next surgery than the mastectomy. Now THAT I was NOT expecting!

3) We don't yet know if there will need to be a third surgery. 

All in all a great appointment, with all kinds of silver linings. The drains are OUT! The Anxiety is lessened. And God is growing your prayer walks by your praying for me. I just love that and am so grateful for your investment in my journey. And thank you for letting me vent and process here. Doctors orders!

Now I'm off to go put on my sleep mask so Ron can help me remove all of this gauze and the surgical vest. Bye Bye vest, you have been my kindred spirit. Deep breath in, Super deep breath out. Pray for my sanity here. 

Our second "please" was also answered. My metamucil did not kick in during the appt. Enough said on that. I will move on. 

See you tomorrow.

Aug 15, 2012 - Day # 8 First follow-up appt

Breast cancer pink combined with lymphoma Lavender and you have trade the tata hot pink. And we are off!!!!! (This is the first day I've had on semi real clothes, don't tell any one they are pajama bottoms. And the very first day I've had makeup on. Boy, was that a feat. Stupid probably, but worth it mentally.)

Aug 14, 2012 - Day # 7 - Metamucil (Post 1) ; Tantrum (Post 2)

Day 7: If how many pillows you sleep with are a testament to how you feel, I'm improving some. What was 14 became 11 down to 5 last night with me actually laying flat (see previous posts). However my back is paying for it today. I think all of this walking around like a zombie trying to keep everything still is paying off for the chest area, but creating chaos for the rest of my body.

Today, I am dangerously close to running out of pain medications before my next appointment tomorrow. So I am rationing and bargaining with myself. If I drink my glass of Metamucil (what, too much information?) I get a pain tablet. If I walk around the block, I get a pain tablet. Tomorrow, I will resupply my stock. Certainly, I didn't expect to need them this far out, but I'm an idiot and thought a double mastectomy was easy cheesy. I was very wrong!  I am far from healed. Super far. 

Today, Ron went back to work for an afternoon meeting. That leaves mom and I here to chart the course. Makes us reminisce a tad since she and I were the ones who first chartered this territory 21 years ago when I was diagnosed with lymphoma. We spent many an afternoon doing exactly what I am doing right now...last time we were lounging and watching day time TV after abdominal surgery and radiation. This time, 21 years later with me now married, a mastectomy. Who would have thought the former would lead to the latter so many years later. She's quite adorable. She won't let me move an inch without her assistance. If I even pretend to need something, she is up like a jack rabbit to get there first. Maybe I could make a game out of this for some entertainment.  

We are moving into the 24 hours I have been dreading so much. Two appts tomorrow afternoon. The first is with Lead Breast Surgeon, whom I adore. We email each other updates and now she is even signing her emails with "xoxo". I think we have long crossed the professional boundaries usually in place. It's only fair. I think once you see someone at their worst, it's hard to stay super professional. I'm spoiled by her greatness. She will be assessing the would healing. Because I had so much radiation to my chest 20 yrs ago, statics show I'm going to have considerably slow would healing. While the radiation is what made me super high risk for breast cancer in the first place, it also made me a less than ideal candidate for mastectomy or breast cancer treatment. And a worse candidate for reconstruction. It is thought that the the chest wall and skin were compromised by the radiation and therefore, I will take longer than average to heal. This is why we delayed reconstruction instead of doing the mastectomy and reconstruction in the same surgery like so many others do.  So tomorrow, she will check the healing time and see if we can take the drains out. I'm terrified of having them removed- because I can't imagine that ill be a pleasant experience removing them. While they need to come out, and I will be a lot more comfortable after the fact, the actual process of removing them makes me hyperventilate. Literally! Huge massive amounts of anxiety. I can do all things through Christ...except this! Wowsers. Now you see the weakness in my strength and faith. I'm terrified. Our other big concern is restoring blood flow to the tissue left behind. Please pray I have blood flow!! If not, we may be looking at needing a tissue graft. Breathe in , breathe out. Too much "what ifs" right now for my mental state. Let's move on. After my appt with the breast surgeon, I will meet with the plastic surgeon to discuss the next steps. We have a temporary plan for placing either implants or extenders starting on Monday at the earliest. (I'd you had asked me two months ago if I would ever have breast augmentation or implants I would have laughed in your face. Now i see everything is relative). Now the worry here is that because of the radiation I'm going to be at high risk for my body rejecting the implant and covering it with scar tissue. So we have to go slow in the reconstruction process. Lead Plastic Surgeon wanted me to wait six months before starting anything, but I guess I'm a little more vain than I once thought. Six months seemed like an eternity. So we are negotiating as we go. I will see what he says tomorrow when I meet with him after my appointment with Lead Breast Surgeon.

I'm learning about the marriage vow "in sickness and in health". Ron should be ready soon to teach classes to any husbands out there that may need some training. He is spectacular at this stuff! Emptying nasty drains, sponge baths, patience, wiping tears, suffering through moodiness, muscle massages....all on little sleep and tense environments. I rewarded him by sending him to work today. He is a man who God has transitioned into a servant with a servant heart. And boy has that served me well. I've got the best husband out there and I want to shout it from the roof tops. Back when I was really worried about how this surgery was going to affect us, he was 100% in favor of me doing what was best for our health. That spoke volumes to me about his Godly character. Now, I need to get one of your husbands to take him out for dinner to give him a break from all of this femaleness. Seven days of starring at these walls. Guess that is one silver lining of having an appointment tomorrow. New walls.  And contact with people who don't live inside my TV screen.  But how awful is that car ride going to be? Breathe in, breathe out. Time for Metamucil. _________________________________________________________________________________

I'm making a difference. See, every journey has it's purpose we just have to wait it out. Even if one life is changed or impacted, our purpuse is served. Often the difference is not for ourselves, but for someone on the periphery. Someone you wouldn't even imagine would be impacted. (Tears streaming down my face as I type this). "Take the boobs, Lord, if it leads to a changed life, a changed heart, a changed medical practice, empathy, a better relationship...". I promise that makes all if this with it. So many of you have emailed me to keep the posts coming because it's impacting your day. I was simply trying to get the benefit of 100+ psychiatrists without paying the bill. But hey, if it helps you too. Let's go for it!

 Ok, so there is my new focus. 100% transparency for my own processing, but also because so many of you have contacted me as to how my transparency is helping your own journey. Well, perfect timing ladies, because today of all days, I am a wreck! Poor Ron and mom had to suffer through it last night. I was a three year old in the midst of a tantrum, an inconsolable 37 year old frustrated female. It was awful on my own account. Don't get me wrong, I fully trust God and his plan, but sometimes the "going through it" just catches up with your emotions. He gives us emotions for a reason, they are very therapeutic, but boy did mine go haywire.

 Flash back to yesterday afternoon when I was feeling so great. Great wasn't something I had felt in seven days. Very far from great. So when there was a single flash of me feeling decent I latched on to it with a grip of an iron man. I was up and about. I visited with a friend who came by, I took a long walk, I watched my mom vacuum (hey, it took some effort instructing her) and I took in all the sights of my living-room. Reminder, I was running low on pain medications so I also spent the day rationing. Well, at about 6:30 all of that came to a very noisy, out of character, unexpected, run as fast as you can, call in the reinforcement screeching halt. And I balled. I yelled. I balled again. I balled some more. They put me to bed where I just collapsed in an emotional pool of slobber. It was awful.....but I think it was a little overdue.

 Now in all fairness, let's go back and dissect the moment. My afternoon was great. I hurt, maybe a 4/10 pain, but for all purposes I felt decent compartively. I had not felt decent in a solid week. I found a euphoria. And I think I put every mental penny I had into that euphoria thinking I had won. I had made it through the tough stage. White flags being thrown by all involved. The gold metal was mine. Well let me tell you, Victory is short my friend, or at least premature. I bent over to get in the chair and a shooting pain consumed that victory. I got up because standing seems to be more comfortable these days and went to help/watch dinner preparations and it was exhausting. I went to go walk in the front yard - my favorite activity these days, and what I look forward to from the time I get up and even that was awful. It was humid and hot and my old knee injury was throbbing. I started thinking to today's appointment and the euphoria just came crashing down. I was terrified of the poking. I mentally hyperventilate thinking of taking this surgical vest off to see what is underneath as I've had a glimpse and let me tell you, it is the most awful sight that will send you to heaving! I was mentally and physically over having all this pain. I was frustrated beyond measure for not being able to even bathe myself and quite frankly I just needed a reach down into my core for a boo hoo cry. Well, I got it and so did the whole city  by the time I was done. Ron gathered me up without batting an eye and took me for my "BATH", if you could call it that. When I got in my one inch of water I balled some more (I WON'T go in to detail of how I got stuck in the tub). He got me up and out and took me to the dining-room for emptying my drains (again) where I boo hooed some more. The pain was back full force and an awful reminder that this isn't over. Some more crying with my mom about these stupid scars and my fears of this appointment, and I finally topped it off with a big old heart sob on my 14 pillow high throne with all my servants standing in awe. They looked like a deer caught in the headlights. I had officially lost it. Then..... sleep. One of the best sleeps I remember in seven whole days. I was exhausted. I was spent. I was done. Fast forward 10 hours. Rise and shine! I'm up and ready for this appointment at 1:30. Sort of.

Breathe in. Breathe out. Surely I can do this. Please let there be sufficient blood flow to the tissue. Please let them pull the drains. Please let them knock me out BEFORE they pull the drains. Please don't let me see the chest wall when they open the vest. Please let this be the fastest 5 hours I've ever experienced. Please don't let me run into my colleagues in the cancer center. Please let me function like a normal person. Please don't let the Metamucil kick in today. No worries, I'm 100% ok. Just some anxiety in a few areas. Remember, I promised you transparency. Stay tuned.

Aug 13, 2012 - Day # 6 - One little drain, so much pain.

Day 6: It's worth stating how different each day can be from the day before and likewise how exactly the same it can be. One never knows where or what when you wake up that morning. I can say I can very easily see where a woman could fall into a state of depression during mastectomy recovery. There is a lott of confinement with vests and drains, repetition of tasks on the hour, lack of social interactions, medication induced emotions. Then there are just the physical changes that lead to a less than perky attitude. Surrounding yourself with pick me up activities and positive people is a must. (Hence my obsession with Anne Of Green Gables movies this week. She's a kindred spirit indeed).

And one must not forget the caregiver who has so much on their plate. Empty drains every few hours, get you to the bathroom, do sponge baths, cook this, grab that, suffer through my emotions, roll me over to put pillows here...on and on. Some comic relief is I slept surrounded by 14 pillows at last count. Pitiful really, but you do what you have to do. I called my mom back in to help out this week so the amazing Ron could have a day or two where he didn't have to be so amazing. Plus, I'm dreading Wednesday (my next appointment), so I want all hands on deck!

We had a great walk last night. The distance was extremely short -you should see my shuffle. I look as though I've aged 70 years. All hunched over watching my feet and walking stiff to try and hold everything in place. Any little movement can send shooting pains that take your breath away. Regardless, the walk is worth it on all accounts. Socialization, blood flow, seeing something other than these four walls. And watching the dog walkers. A pooch can lighten any spirits. Almost.

Last night, I broke down. So frustrated as to why I was still in so much pain and limited in mobility. Mom quickly reminded me of all that had been done to my chest wall just six days ago. Anyone would still be in pain. I'm an over achiever and since I don't see a lot of progress in that area, it frustrates me. I have a very lengthy tube all coiled up in my chest wall. It's sucking out all fluid. It's not supposed to be there in every day life. Of course it would be painful. Oh to get rid of that not so little tube which causes me so much woe!

 My big concerns today: dreading the actual removal of the drains on Wednesday. Dreading the appointment all together for the poking and prodding. Dreading Monday for surgery #2 to start reconstruction. It should be much easier this go round by far, but still just ready to be done with this stage of having a concave boob-less chest. It certainly unfolded way differently than I had anticipated. But God has His plans and He has His provisions. He teaches me in my despair and grows me through our conversations. Baby steps still get you to the finish line.


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Aug 12, 2012 - Day # 5 - My brand new Lazyboy

Day #5. The great news is I am sleeping really well at night. A miracle in itself if you could see the positions I have to put myself in to relieve the pain. It's comical on absolutely every level, except for maybe Ron's level who has to get me settled each night. I got 10 hours last night. Praises. It seems impossible, really, but it happened.

 Yesterday, was all about massive edema in my legs so Ron sat on the bed in front of me so I could prop my legs up on his head (yes, his head) to let the fluid drain down. He basically became my lazyboy and I just sat there laughing at the absurdity of it while peering over the top of his head to see the TV show. Really, who else but Ron would do that for someone. He literally sat there and watched TV with me with another human being's legs on top of his head and shoulders. And when I say it was hysterical (if you can get past the pitiful), I mean absolutely laugh down to your gut hysterical.

The pain from the edema is a little better this morning. Really, I thought the pain in general would be less by now, but so far each day is the same as the day before despite my narcotics. Have I mentioned I'm ready for the drains to be out? Please don't miss out on that revelation. My emotional state is improving a tad as well. Each day it is a little easier to look inside the bandage and see a chest wall that is not only flat, but actually concave and scarred. It's an enveloped mash up of skin and glue (the surgeon used glue to close the incision so it could be reopened again for reconstruction starting in a few days). This smashed up mush of what used to be a boob will freak someone out after a lifetime of seeing something very different. I didn't realize just how much these two flabs of skin affected your self view. If you had asked me about that perspective 2 months ago I would have said you were crazy. I would have been wrong.

God is growing empathy in me and giving me a view into a population I haven't been exposed to before, those blessed women of mastectomy. I'm learning that scars of mastectomy are way better than the alternative statistics. What was a 90% chance of breast cancer last week is now less than 5%. Peace of mind in the long run if we can get through the emotional and physical scars of the next six weeks. God isn't finished with me yet. He has great plans (this included) and I'm meeting amazing people along the way. And I'm finding a new side to my husband that trumps every man I've ever met. "Time to empty the drains" he says with a huge smile on his face as he watches the tears stream down mine. He has to suffer another day through my tears. I get to be blessed through his servent spirit. I love him so.

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Aug 11, 2012 - Day # 4

Day 4: Today's been an emotional day, but I imagine that is over due. Feeling more fragile and I am super ready for the drains to be gone. I absolutely detest them and have nothing nice to say about drains (long tubes inserted into the breast envelop where the breast used to reside. These tubes come out of the skin on the side of your breast and on the end of the tube sits a bulb that collects all the drainage from inside the breast. Every few hours the bulbs must be emptied into a cup to measure the output. I currently have two drains, one on each side). It also seems I underestimated with my super optimistic personality how much recovery was in my future. I can't imagine how women with breast cancer do it all at the same time. Chemo + surgery. I'm working to be grateful for the one and not having to deal with the other. This is just one big ball of not so much fun.

Missing my sister and mom and all the humor they brought to the house. So grateful they were here the past few days. Day #4 of Trading in the Tatas. Short sweet and to the point, it's all I can muster today.


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Aug 10, 2012 - Day # 3 - It's done

Three days ago I knew this would be hard. I  chose to go for a double mastectomy with delayed reconstruction. That is a radical decision to say the least, and it is certainly a controversial decision for some considering I don't have breast cancer (more on that in future posts), but for us it was absolutely the right decision. However, I was naive. I had no idea how hard the recovery from this procedure would be. There's definitely a mental adjustment I never understood before these last few weeks. In addition, there is a huge physical adjustment to the pain, scars, limitations, and drains. I have a new found appreciation and understanding for the thousands of women who experience this journey. I share this now in real-time so I can advocate for others making this crazy difficult choice in the future. If I can do this, anyone can do this.

Thank you for supporting me in this process. It's going to be a long journey, and I don't know what I am in for yet. I'm on day 3. I'm boob-less. I'm changed. I'm empowered. I'm terrified. Here we go!


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