Ankle

The inside of my right leg, directly above my ankle, has bothered me for years. Mostly when I run. After about a mile it starts aching, and the pain gets worse from there. I usually stop by mile 3 or 4 because it's bothering me. Then it hurts for a couple days. Then it stops. Then I go on another run. Then it flares up again. But, I keep putting off going to a doctor. Because, you know, doctors. 

Since I've met my out of pocket max with our insurance this year, I figured I better take advantage and deal with all of my possible medical issues. I went to an orthopedic surgeon the other day, explained the situation, and he said:

1) It is likely "compartment syndrome". I had never heard of this. He described it like this. The muscles are like sausage in a casing. Some peoples muscles build up too much pressure when they exercise. The muscle gets too tight in the casing and it causes pain. The only way to fix this is with surgery. They go in and split the casings in the 4 compartments of the lower leg. And then the muscle has room and doesn't continue to hurt from excess pressure. The only way to tell if this is the problem is with a pressure test, given by a sports medicine doctor. He puts needles into the 4 compartments to test the pressures. Then you run on a treadmill in his office. Then he puts the needles in again to retest the pressures. If they are around 20 or higher, you need surgery. I watched the test on some YouTube videos. It seems painful. Not something I want to do immediately. 

2) The other possibility is tendinitis. This would be helped with a brace (pic above), orthotics, and physical therapy. Since I am already starting physical therapy next week anyway (for mastectomy recovery), they can help me with both issues at the same time. I might as well try this first, before having the pressure test. I will exercise with the brace, be diligent with the physical therapy exercises, and see what happens. 

If, by mid July, things aren't improving, I will have the pressure test. If I need surgery, maybe I could swing getting my next mastectomy reconstruction surgery AND the ankle done at the same time! End of August. But hopefully it won't come to that. 

So, headed to the dermatologist tomorrow, to have some spots looked at. And the endocrinologist next week, for hormone regulation issues. I seriously feel like I live in doctor office waiting rooms lately! But, I'm grateful there are awesome people out there who can help me. 

Expansion Setback

Last week I was feeling quite comfortable and happy with the breast size we had achieved by adding saline (weekly) to my expanders. But, I still decided to go have one more fill. I had a few reasons for this. First, I'm a VERY indecisive person. I literally have to read everything on the menu at any restaurant we go to, before I can decide what to order. It's a problem. I never wanted to wonder (after my expanders are replaced by permanent implants) if I chose the right size. I wanted to see what bigger was like, while I can still reverse my decision. Saline can be removed. Or, smaller implants can be chosen at the time of surgery, even if expanders are larger. I just wanted to make sure I really thought this all through. 

Also, I'm part of a group on Facebook (BRCA Sisterhood) with women who have this gene mutation. Most have been through or are going through the same surgeries as me. I've been asking them how they feel expander size compares to implant size. Since the shape and texture is so different, they sit differently in the body. All the women responded that their implants seem smaller than the expanders did. They are softer and project less. This made me think that I should deal with a larger expander size over the summer, so things will hopefully be ideal at exchange surgery, which is scheduled for August 31. 

But, the extra fill turned out to be a bad idea. See the picture above? That's how I feel. I have had pain with my previous fills, but it's been muscle pain. After a few days, the muscle gets used to being lifted, and the pain mostly subsides. But this weeks pain is different. It's not just the muscle. It's all around the whole chest area. It feels like my skin is stretched to the max but the expander is still bigger than the cavity. So, the expanders are trying to find room elsewhere. They are seeping into my armpits and up into my neck and in towards my sternum. It burns. And the pain isn't subsiding. It's much more than the muscles. Also, it feels like nerves are pinched. I can tell that my body doesn't like this. It doesn't feel right, and I don't think it would be wise to keep this size all summer. It's not worth the pain and possible damage to my body. 

Plus, I went and tried on swimsuits and bras. My doctor recommends doing this throughout the expansion process. This current chest size is out of proportion with my body. When I find a swimsuit that fits my torso/hips/body, the chest doesn't fit right. I spill out of it and it's too tight up top. What if the implants end up the same size as the expanders? I'll have a really difficult time finding clothes that fit comfortably. I'd rather feel too small than too big, for the rest of my life. That decision took some thought, but I've decided. 

So, I want to remove the 60cc per expander that was injected last week. Problem is, my doctor is out of town this upcoming week. She can't see me till a week from Tuesday. I'm so uncomfortable and am really depressed that I have to deal with this for another week and a half. If I didn't have anything going on in life right now and I could sit around and rest, maybe I'd be ok with it. But, this is the last week of school and there is TONS going on. Field trips, talent shows, field days, parties, presentations, etc. And we have friends coming into town over the weekend. We are showing them around Salt Lake, going hiking, Park City alpine slide, Temple Square, and picnics. I really want to enjoy the days we have with them. 

Overall, I need to suck it up, adjust my attitude, take lots of ibuprofen, and smile. I suppose everything can't go perfectly. I'll take this setback over other possibilities. I just keep crossing my fingers that my body can handle this excessive pressure and doesn't retaliate with an infection or something. That's still a big fear I have. 

I might be able to take this all in stride a bit better, but I've also had some bad news about my ankle. I saw an orthopedic surgeon the other day, but that's a story for another day. 

One Step Forward

5 weeks out

I'm officially 5 weeks post op! Which is pretty awesome. It's only going to get better from here :) I'm starting to resume a mostly normal life, even though I'm still dealing with some pain. I try to squeeze in naps, if I can. But it only happens about every other day. I often feel exhausted and really need the naps. Partly because my body is still healing and partly because I'm not sleeping great at night. I just can't get use to sleeping on my back.

I did light exercise during weeks 3 and 4 (brisk walking and elliptical machine). Last week I worked out a bit harder (aerobics and walking up big hills). Tomorrow I'm going jogging for the first time since surgery. I hope I can make it at least 2 miles without much trouble. I was used to running about 3.5 miles comfortably, before surgery. My goal is to run a 10k in August, before my next surgery. It will be good to have a goal. Something to work towards. Also, I've been given clearance to lift things again! Including weights! I just have to start slow, listen to my body, and be careful. I hear it's very strange to lift weights with the pec muscle now being positioned differently. We'll see. I am still 3 weeks from bathing/swimming/soaking. Bummer. But at least it's not smack in the middle of the summer. Plus, I don't have a swim suit that fits my strange chest now anyway. So I can't think about swimming!

My next surgery is tentatively scheduled for Wednesday, August 31st. I will have a pre-op appointment a couple of weeks before. We will discuss the size of my cavity (where the expanders are now), how I'm healing, etc. My plastic surgeon will advise me on which permanent (10 years) implants would fit my cavity best. I've already decided on silicone, rather than saline. And I think I want round shape rather than teardrop shaped. Teardrop shaped can appear a bit more natural, on some bodies. However, if they turn or shift in the cavity, you have a problem. Since they aren't symmetrical, if they shift, surgery is required to move them back into proper position, or to replace them. This turning is more common if women are very active. I want to be very active! And I don't want to worry about them turning. Round implants, on the other hand, can turn and shift under the muscle without causing a problem, because they are the same all the way around. I'll find some pictures to better explain, in a future post. Plus, I have more research to do and may not be explaining this all accurately anyway. I'll get educated. 

There is also the "profile" of an implant to consider. This is basically how wide the implant is, verses how much the implant projects out. An implant of the same volume can look completely different in different profiles. Think of a round balloon. That would be high profile. Smash it down a bit and you might have moderate profile. Smash it down more (so the base becomes wider) and you have low profile. Even though the volume of the balloon remained the same, it looked very different at different profiles. Because I am not a "wide" person (across my chest), I will likely be best suited for a high profile implant. That means the volume isn't wide at the base, but rather projects outwards. 

I've been stressing this week about if I should have another "fill" this next week, or if I'm happy at the current volume of my expanders. I had 60cc injected into each side last week. That puts me at 340cc per side. I feel content with where I'm at, but think I think I will have one more fill to make sure. If I feel uncomfortable and too big, we can remove saline and go back to my current size. I don't ever want to question "Should I have tried a bigger size?" This way, I'll hopefully feel at peace with my decision. It's surprisingly emotional, as much as I wish it wasn't. 

I've been surprised with how difficult the decision of size has been for me. I really never thought of my breast size before. I was happy with my body the way it naturally was. I wish I could just have it all back. I'd take my saggy, small, comfortable, nursing breasts any day over the hard, numb, unfeeling mounds I now have. But, here I am. And now I'm being asked to simply decide the size I want. I can't even choose an item from a restaurant menu without a near anxiety attack! I have to read every option before deciding. And I usually still second guess my choice. I can't buy a pair of shoes without going to all the possible shoes stores first. I keep asking myself questions like "How will clothes fit with different sizes? What will feel comfortable as I exercise? If I'm too big, will they be in the way? If I'm too small, will I regret my choice?" Etc. My husband and my plastic surgeon are both keeping out of the decision. Jonathan is so supportive and sensitive to my emotions. He wants me to feel comfortable and only choose based on what I want. Surgeon says she doesn't give her opinion about size. All women have different ideas of what is beautiful. She wants each woman to decide for herself, so it's truly coming from her. I understand this logic, but I just want someone else to decide for me! Ahhhhh!

Lastly, I feel so grateful that things, up to this point, have gone so smoothly. No infections, no necrosis (skin "dying"), and relatively normal aesthetics. Pain, numbness, and limited arm range of motion have obviously been the worst parts, but it's a small price to pay. I would not have all of these advantages and reconstruction options if I had cancer first. It really does feel like I have dodged a bullet. I pray my daughter (and grand daughters, etc.) don't have this mutation. And if they do, I pray for even better options for them. 

Endurance

Well, I am officially sick and tired of school being in session! "READY for summer" is definitely an understatement. This photo illustrates what we did this Saturday. Ahhhhh!!! Why are teachers assigning such huge projects at the very end of the year?! I'm over it! And mentally exhausted. And ready for sprinklers, popsicles, picnics, and hikes. So, let's hope the next two weeks zoom by :) Bring on summer!

Choices

Garden!

We have been looking forward to this day for a very long time :) We have lived in our house for 2.5 years and just got our backyard finished. We were most excited for the raised cedar garden beds. They were completed just 2 days ago, so we jumped at the chance to plant today. 

The first bed is completely tomatoes: Heirloom purple Cherokee, Black Crim, Cherry, 2 Roma, Early Girl, Celebrity, and Beefsteak. We did a bunch of different varieties so we can see what grows best. We LOVE tomatoes! And salsa!

The next bed has Swiss chard (rainbow variety), red and orange sweet bell peppers, jalapeño peppers, red potatoes, beets, and a few little sprouts that our daughter brought home from school. Her class planted them from seed. They look a bit sad at the moment, so we're hoping they survive. Pray for the corn, watermelon, squash, and pepper sprouts, or a 7 year old will cry :)

The last bed has zucchini, yellow summer squash, cucumber, cabbage, and tons of herbs! Herbs include: oregano, chives, wheatgrass, cilantro, thyme, and lots of basil. Cooking will be so much fun this summer!

We used paint stir sticks as garden markers. They worked great! They are big enough to stay firm in the ground and they had plenty of writing space. We also planted marigolds in the corner of each bed. The colors are fun :)

So, now we just have to hope and pray that we care for them properly and that all our work (and cost on the beds) ends up being worth it. We really love fresh produce. I can't wait to watch everything grow!

Fill

I got my first fill today, injecting saline into my expanders. I was super anxious for it. It put me in a grumpy mood yesterday. She found the port with a cool magnet and marked the spot of the port. Then she stuck me. The right side was first and when the needle went in (through my skin, muscle, and into the port), it hurt. But the pain actually was shooting through my right arm, not in my breast. It felt like someone gave me a dead arm. And the pain didn't go away for a half hour or so. The reason I felt it in my arm is because those chest muscles are all interconnected with other nearby muscles. 

She slowly injected saline and I could feel my chest wall tighten. It didn't feel too uncomfortable at first. She said she would fill as much as I could tolerate (pain wise). It was basically up to me. I tried to relax and breath to determine when to have her stop. At one point I said to stop and she backed up and removed some saline. Then she injected it again. I guess it helps to stretch the muscle, then relieve it. We settled on 100ml of saline. I felt uncomfortable, but wasn't dying. And I knew the other side was still coming. She removed the needle and put a small bandaid on. I didn't watch any of the needle stuff. 

The left side wasn't so bad. I only felt pressure when the needle went in, and no arm pain. During my mastectomy surgery, she filled the expanders part way. But she ended up filling the left side more than the right because that side was tolerating it better. Because of that, the left side has been bigger for the past 3 weeks. So, today, she wanted to even things up. At surgery, the left side got 240ml and the right side got 180ml. Adding 100ml to the right side brought it to 280ml. So, she added 40ml to the left side today and was done. Now I'm not lopsided! From here on out we'll add evenly to each side. 

Here's my new dilemma. What size do I want to be?! My doctor asked me this today and I didn't really have a response. I've always just been the size I've been and haven't really thought much of it. I never planned to change that. She said to really pay attention to how my clothes fit and how comfortable I am at each size. The shape of implants is different, but the size will be comparable. Once I determine that I'm happy with the size (or I can't stand the thought of any more fills!), she will stop adding and I will continue to let my body heal. She likes to give the expanders 3ish months at desired size. Then we will schedule the exchange surgery, to take out the expanders and replace them with softer, permanent (10+ years) implants. This surgery will likely take place the end of August or beginning of September. That day can't come soon enough! The expanders are SO hard and uncomfortable. I felt a silicone implant in the office today and it felt so soft and nice. Can't wait for that. 

Worry

I needed this today. I am definitely a worrier. I stress about every possible thing that could go wrong. And it's not healthy to constantly have my mind in a state of panic. I realize it is a sign of my lack of faith and also shows my lack of humility. I need to let go and trust. 

This

I struggle so much with this! Everything seems so important: keeping house, kids activities, health and fitness, marriage relationship, church callings/activities, community issues, hobbies, friendships, etc etc etc. It is so vital that I step back from the crazy and really ponder what the Lord would have me do, at any given time. Maybe today it's baking bread. But tomorrow it's taking a nap. And the next day it's volunteering in my kids class. And the next day it's making time for a dinner date. I need to be in tune to determine where I should go and what I should do. Because there is NEVER time for it all...

Kindness

This is the mantra that I like best :)

Drain Purses

See those cute red, polka dot purses hanging at my sides?! Well, that's what I've been wearing to hold my drains. I have a wonderful friend who has had breast cancer and a mastectomy. She knew that I would need these and made me my very own pair! So thoughtful and appreciated. I hope that I can make these beauties for friends of mine that have to have a mastectomy, in the future. I'm so grateful for amazing friends!

Pressure

This is currently my main complaint. My chest feels so tight! So much pain right along my sternum. I'm sure the expanders are putting pressure and pulling on my pec muscles, which is causing all of the pain. But dang, it doesn't seem to be getting any better. I feel like deep breaths should start to feel easier, but they keep hurting. And I can only imagine that the pain will increase next week when we start filling the expanders. I guess I will have to get used to this awful feeling. 

Drains!

Agreed. 100%. Good news is, I should get my last two drains out tomorrow!!! This will do a ton for my morale. And I won't feel like I need to stay "in hiding" so much. Also, mid-week, I will give driving a couple of test runs (around the neighborhood) and see if I feel capable/safe. 

Good bye drains!!!

Expander Surgery Video

Wanna watch a surgery where they insert the tissue expanders and sew in the AlloDerm? Here you go!

https://youtu.be/NQCT2FxZU2c

Expanders

Oh, expanders! Oh, how I hate them! But, I am grateful to forego the breast cancer part. 

Let's learn about expanders. 

Mastectomy removes all the breast tissue. This leaves the woman with a skin pocket and her remaining chest muscles.  If an implant is simply places in the skin pocket, on top of the muscle, it presses against the skin and strangulates the capillaries. This can cause the skin to die. Also, the skin is so thin, it doesn't support the implant very well. So, the implant generally goes UNDER the chest muscle. 

Because the pec muscle only comes part way down the breast wall, AlloDerm (cadaver tissue) is stitched to the muscle. This helps create a stronger, larger pocket for the implant. 

You might ask, why (during the mastectomy surgery) can't they just put the implant under the muscle/AlloDerm pocket? This can happen if the woman wants a very small implant. But, if she wants a normal size implant, it would be too much shock/pain on the muscle. The muscle is used to being flat against body. Lifting it and putting an implant under causes a lot of pain through the chest (and connected arm muscles). This is why expanders are used. 

The expander is placed under the muscle /AlloDerm pocket. The woman is stitched up and has time to heal for a few weeks. Then, she goes to her surgeons office for "fills". 

There is a magnetic port on each expander. The dr finds the port, sticks a needle into it, and injects a small amount of saline. The port is "self healing", so once the needle comes out, it closes up with little leakage.  Fills can happen every week, little by little, until they are full to the woman's desired size. After each fill, the chest muscles are sore and there can be a lot of pain. 

Once a woman is finished with fills, she has to leave the expanders in for a few months. This helps the body and muscles really adjust to the change and pressure. 

Once the time has passed, the woman goes in for "exchange" surgery. This is when the expanders are removed and exchanged for implants. This will be a happy day! Implants (which I haven't learned much about yet) are supposedly much more comfortable and natural. 

So, for now, it's expanders. They are uncomfortable, pokey, heavy, and awkward. It's hard to explain. They are so wide, too. From my sternum clear out into my armpits. They actually cut circulation off in my arms at times. I will be glad to be done with them :)

Chocolate Cake

When you're inside all day, feeling rotten and sore, and your husband brings you home this:

everything is ok for awhile :) Funny how chocolate can do that.