Don't take squishy boobs for granted...

Progress! It's only been a couple of weeks (not a month) since my last blog! Woohoo! Boy, have there been some developments. Things are moving pretty fast again.

First of all, I just want to say thank you to the people who reached out to me after my last blog. I'm not going to name any names, but the messages & phone calls meant a lot. Thank you. I want everyone to know that I really am ok. Even on my bad days, I'm still thankful for all the gifts God has given to me. Bad days are just that.....bad. Blogging helps me (when I remember to do it) work through these feelings that ramble through my head. I'm just thankful to have so many people who care about me. :)

Second of all, I have a huge announcement. My exchange surgery is FINALLY scheduled. YAY!!! I'll be ditching these rock-hard, heavy, misshapen mounds for soft, subtle, SQUISHY, silicone implants on Monday, March 19, 2012 at 10:30am. It will be an out-patient procedure at Presbyterian Main Hospital in uptown Charlotte. I cannot express how excited I am!

That has made me feel a lot better and it gives me something to look forward to. I am nervous, too, I can't lie. There's always concern anytime you have to be intubated with anesthesia and I'm concerned about the "after" results. I realize that there will be more adjusting, more grieving of what was, and some patience to settle into my new breasts. BUT...I will be rid of these expanders! That's the best part and believe me, NEVER AGAIN will I take squishy boobs for granted. I swear that's my new slogan. I'm telling all my friends....don't take your squishy boobs for granted! Someone needs to make a T-shirt!

My third bit of info isn't as happy. After seeing Dr. Appel for my pre-op check, and his thorough examination of my arm, he confirmed my fear. I have developed mild lymphedema in my left arm, even though he said that only 5% of women with a Sentinel Node Biopsy develop this condition. My hands were still swollen that morning and my wedding rings wouldn't budge. He prescribed me some Dilaudid to take at night to help me sleep and sent an order to physical therapy for treatment of the lymphedema. I asked him about a compression sleeve to wear for treatment, but he said that the sleeves were used more for moderate cases. I could go back to Peggy for manual lymphatic draining, so I was happy to have a plan. He said that it we could effectively treat it, we could probably prevent it from becoming a moderate case. Thank goodness!

When I went to PT, I didn't think I was swollen. I could take my rings off and had good range of motion, so I was surprised when Peggy told me that she could tell that my arm and shoulder were swollen. She took some measurements and quickly agreed with Dr. Appel's diagnosis. That was a bummer. She did not agree with his statement about compression sleeves for treatment.

Let me break from this for a quick second and just say that there is a lot of debate within the medical community concerning lymphedema, lymph node removal, and all that. It can attack someone randomly after axillary lymph node biopsy/removal. Someone with only 1 node can be affected, so can a person that has had 20 removed. The same is true in the opposite scenario. Some people say that compression sleeves are a great preventative treatment, some say only in extreme cases. There are different studies to verify both theories, but there hasn't been enough research on this subject to have a concrete conclusion.

Back to Peggy- she was going to do some manual draining, which was very painful, and she was also going to check with my insurance for a referral to the lymphedema clinic. She thinks (and I agree) that I would benefit from a compression sleeve. It will help what is already swollen and hopefully help or prevent any more fluid from collecting in my arm and hand. Summer time is not far away and I know that heat has to make it worse if this is anything like regular edema. I'll find out on Thursday if I'm going to the clinic before or after my exchange surgery.

A lot has happened in the last couple of weeks and that's been a good thing for me. The physical therapy and lymphedema have also slowed me down in regards to soreness. It kept me from going to my dear friend Laura's 1 year anniversary party. Missing that really sucked. I'm frustrated that I have to go back to physical therapy twice a week and miss more work. I feel like I need to be working more, especially since I learned that I was out of FMLA time, but my schedule is what it is. I'm trying to not stress about this for two reasons. One, everything will work out...I know it will because it always does. Two, if I don't take the time to focus on myself and take care of me; I'm not going to do anyone any good. Not work, not the house, not the kids, not my husband. Ward has been such a wonderful support- he encourages me when I need it most and picks up my slack whenever he can.

Am I still exhausted? Some days. It has gotten better since I have nighttime pain medicine. I can usually get between 4 or 5 hours of good sleep before I'm up & down. That's a big improvement, but still not what I would say a good night's sleep was. I am aching to sleep on my belly! Do I still feel lost? Yes, some days. My sleep is better, my pain is more manageable, and I'm still seeing my counselor so all that is helping a lot. Again, it's a process. Am I still having self-image doubts? Yes. That one may take a little time. Do I feel stuck? Sometimes....but I have something today that I didn't have a couple weeks ago & that's a countdown.

13 days until I have squishy boobs!

The break I never wanted

So I said I would post more and yet I've done the exact opposite. I think I'm lost and trying to navigate my way back to my new normal. The last 6 weeks have been very eventful in regards to my daily routine. I've gone back to work full time, although my first week back my children decided to share a nasty cold with me. I've finished expanding after reaching a whopping 790cc's in each side. Physical therapy discharged me because my range of motion in both arms was above 170 degrees. Sounds like things are pretty good, right? That statement couldn't be farther from the truth.

In my last blog, well over a month ago, I talked about grieving and the wonderful counselor I see seems to think I'm still grieving. All I know is that I seem to be shutting down emotionally.

Although I'm back at work, I never imagined it would be this difficult. I felt a lot of pressure to return to work, and in all actuality, I should've listened to my dad (AGAIN!). He tried to tell me that I should just stay out until my exchange surgery, which is slated for mid-March. I argued with him, which I apparently love doing, explaining that I was feeling better and was going stir-crazy in the house. Plus, financially, we are struggling. Short-term disability only paid a fraction of my normal pay, and though we were stretched to the max, we were making it.

So my hard-headed self went back to work. While trying to adjust to my schedule, I began to realize that I was in trouble. It's no secret that trying to get a good night's sleep is very difficult when your turtle shells are overexpanded. But add some problems with my left side and it's damn near impossible.

I've had issues with my left arm since my mastectomy surgery in November. My range of motion was always less and it's always hurt. While I was seeing my physical therapist, we had a hard time deciding what was wrong- was it a pinched nerve from the expander? Was it muscular pain? It seemed likely to be a nerve since the pain I was feeling started in my left chest, traveled through my armpit with intensity and radiated through my lower arm to my elbow. Towards the end of my time with Peggy, she found (felt) evidence of cording. Technically, it would be Auxiliary Web Syndrome. In laments terms, it means that the lymphatic drains on my left side have developed scar tissue due to the sentinel node biopsy that was performed during my mastectomy.

Since I've stopped seeing my physical therapist, the pain has gotten substantially worse. My range of motion is declining once again and this morning, my hand was swollen to the point that my wedding rings wouldn't budge. That is super scary because the first thought that raced through my mind was lymphedema- a condition where the lymph fluid can't drain propery and there's no cure once you have it.

All these factors- increasing pain, decreasing sleep, full-time work, house, & kids- have made me a miserable person. I think all this is wearing on me and my emotional state.

I'm very frustrated that this is happening and I'm still a month away from exchange. I'm so exhausted that I have to push myself just to function through the day. Although I take pain medicine and muscle relaxers on a daily basis, it barely puts a dent in my pain level and sleep is impossible. I'm so tired that I fall asleep pretty quickly but I'm constantly waking up throughout the night.

My emotional state isn't much better. This is, by far, the hardest thing I've ever done. I still struggle to look at myself in the mirror. In a shirt, I look ok. Similar to the old me, just a little smaller and a lot more perkier. Just out of the shower, though, it still brings me to tears. Don't get me wrong, I'm SO happy that I'm cancer free. I KNOW that I made the right decision to have a bilateral mastectomy. BUT....I'm still second-guessing myself some days, wondering "what if?". I feel so "less-than". I miss my breasts and it's hard to see these weird, heavy, tight mounds that sit upon my chest. Instead of nipples, I have angry, red scars that still scream out at me. I have an ache deep down in my gut that tells me I'm missing something.

I knew going into this that I would have to get used to a new normal, I just never imagined it would be so difficult. Of course, there's no way to prepare for this sorta thing. I don't like these feelings of being stuck, of hating the way I look, feeling unattractive. The word "sexy" doesn't exist to me right now. (My loving, patient husband would strongly disagree.) I really do feel lost. Like I'm barely keeping my head above water.

My friend Laura still checks on me, almost daily, and I love her. I can spill my guts to her and she GETS it. I'm so blessed to have her. I'm seeing a counselor at the Buddy Kemp Caring House at least every other week. I've made reservations to 2 support groups for next week. I blogged today. Hopefully these little steps are steps in the right direction, to lead me out of this fog and back to my happy life. I really do have so much to be grateful for and I am.

I see Dr. Appel again on Wednesday and I can't wait. I've really missed him over the last 4 weeks! I spoke with him today and he wanted to know how I was doing. I told him all about my arm and he's placing an order for me to get back to physical therapy. He said we would talk in detail about it when he saw me next week. I'm sure he'll want to check out this arm...you can actually see the cording when I lift it. Weird!

So there is progress being made, even though it's baby steps. I'm sure once I can control this pain, get into PT, and get some MUCH needed sleep, I'll feel like my old self again. That's gonna be good because I sure do miss Amy.

Week 5 & AMAZING Physical Therapy

This has truly been my best week by far!

Monday, I started physical therapy and I couldn't wait to get there. My great friend, Laura (who happens to share my Plastic Surgeon and is getting her implant exchange next week!), told me all about her experience with PT and the "new" technique that is used for mastectomy patients.

I made an appointment with my therapist, Peggy, for 10:15am. I got there at 10 so I would have plenty of time to fill out more paperwork. She took me back and we had a quick intro, medical history, and how the mastectomy has affected me. She measured how many degrees I could lift my arms from a sitting position and then a laying position. Full range is 180 degrees. (Remember your protractor?)

My measurements were:
Sitting-right arm: 161 degrees
Lying down-right arm: 168 degrees

Sitting-left arm: 142 degrees
Lying down-left arm: 146 degrees

Obviously, I have some work to do. After measuring, Peggy explained that she would use a technique called "Myofascial Release" before we started any exercises. I never heard of that before, it sounds kind of fancy, so I was curious to what this entailed.

Before I explain this technique, let me update you real quick on how I feel. The lymph node dissection that they performed in my left arm pit has affected my left arm's range of motion more than I ever thought it would. It has been a struggle since surgery to even wrangle a cami over my shoulders because I couldn't lift my arm very far at all. In general, I felt tight. It's so hard to describe but the best I can compare it to is that it feels like I have a sports bra on, that's at least 2 sizes too small, ALL the time. It is uncomfortable, not necessarily painful. This extreme tightness encompasses my entire torso, my underarms, sides, and the upper half of my left arm. When I have a muscle spasm, it's even worse. I sleep in the recliner still, and I only recently (over the weekend) took a shower or dressed by myself. I was able to start driving over the weekend, but it is difficult for me to turn & look behind me, to turn the wheel with my left arm, and I learned that my seat belt really hurts my left side. Thank goodness for little pillows!

Alright, so back to PT. From Peggy's trainer's myofascial release website, it says that "Myofascial Release is a safe and very effective hands-on technique that involves applying gentle sustained pressure into the Myofascial connective tissue restrictions to eliminate pain and restore motion".

So what is myofascial tissue you ask?

Myofascial tissue is "Fascia is a specialized system of the body that has an appearance similar to a spider's web or a sweater. Fascia is very densely woven, covering and interpenetrating every muscle, bone, nerve, artery and vein, as well as, all of our internal organs including the heart, lungs, brain and spinal cord. The most interesting aspect of the fascial system is that it is not just a system of separate coverings. It is actually one continuous structure that exists from head to toe without interruption."

The way that the physical therapist explained it to me was that fascia was very similar to the "thin film covering" that we often remove off of a chicken breast before we prepare it. That "film" is one continuous structure in our body. When we have trauma to our body, such as mastectomy surgery, that myofascial tissue locks down and tightens as a defense.

Here's the scientific explanation of that: "Trauma, inflammatory responses, and/or surgical procedures create Myofascial restrictions that can produce tensile pressures of approximately 2,000 pounds per square inch...".

As Peggy explained all this, I really got excited because it made PERFECT sense. She told me that it was like a massage when she started, and it felt like one. She started in the center of my chest, with gentle pressure. At first, it felt like she was just pushing her hand down on my sore sternum, but after a little bit, her hand started to slide down. I could feel the tension releasing! She moved to my left side, which scared me.

It scared me because I am so sore & tight. I've never been scared to move or have someone touch my body before, and it's not a great feeling.

As she worked on my left breast, side, underarm, and arm, I could feel things start to loosen up and it felt wonderful! After the "massage", we moved to the equipment room and she showed me some simple stretches for me to do at home. I felt wonderful!

After that, she took measurements again. The progress I had in just one session is nothing less than AMAZING!

Sitting-right arm: 172 degrees
Lying down-right arm: 175 degrees

Sitting-left arm: 160 degrees
Lying down-left arm: 165 degrees

I will go to PT twice a week. Since she was booked for the rest of this week, I was able to slide into a lunch-time slot yesterday. I made even more progress with my range of motion. Lying down, I was able to extend my right arm a full 180 degrees.

I was SO excited to show Ward what I can do! Peggy told me that she would have me comfortable enough to finally sleep in the bed again! I still have some work to do and strength to gain, but I am so grateful that this opportunity was available to me! My first fill is Friday, so naturally, I'm nervous. BUT....I feel like I have an advantage with PT. She has relieved so much pressure and tightness in my chest that I feel like I have room for the expansion.

I am so impressed with the myofascial release! I think it could help so many problems that we have with our bodies sometimes. I became a believer on Monday morning because I could literally feel my body "let go" of that tension. It was truly incredible.

I'm ready for some cleavage! :0)