Saturday, August 9, 2010

Goodness, gracious . . . a lot of time has passed since February 26! I have mentally updated my blog so many times but I have not had the gumption or courage to get on and write--mostly because things have slowly gone downhill since my last entry. Sometimes it seems like ignoring the situation might make things get better but that has not been the case. Let me get you back up to speed . . .

When I first got my news that the fusion seemed to be progressing well, it was such an answer to prayer. There was a real sense of relief that we might be seeing the light at the end of the tunnel.

The staff surprised me with a funny luncheon prepared by our genuine, “bone”-ified school skeleton, people (especially my students) were thrilled to see me bearing weight with my

walker, and we found (what was hopefully going to be) a final parking space for my scooter in a dark part of the garage. Amazingly--as I slowly started putting weight on my foot--it felt solid and good.

Around Spring Break, Dr. Carbonell let me know that it was time for me to start going to physical therapy. All of a sudden, I was buying canes in different colors and shopping around for rocker bottom shoes. At $250 a piece, my lovely rocker shoes weren’t cheap—but they were sure better than my big boot! My physical therapist, Doug, was amazed at how well I could walk right off the bat. He worked with me to adjust going up and down stairs, build strength in my legs, and loosen up some very stiff toes. After just three weeks, he discharged me saying that I just needed to keep using the cane and wearing a compression sock for at least a year while my body got used to forever functioning with a "block" foot (a foot with an ankle that can not bend at all).

The thing is--although all of this was very encouraging--I was quietly beginning to panic. I was in so much pain. Although I wanted to prove to myself that I was getting better, every step was telling me that something had to be very wrong--or if not “wrong”—at least not what I was hoping for as an “end” result. If this was what the rest of my life was going to be like, I honestly hoped that I wouldn’t live too long.

The thing is, when walking is that painful, you don’t want to go ANYWHERE. You just want to sit in your chair and figure out how to take the least amount of steps to accomplish what you absolutely have to do.

Pain is a crazy thing. It is all your brain thinks about. You get irritable. Short with people.

Demanding. Your mind keeps thinking about that pain pill or glass of wine that can give you a little break from the misery.

My x-rays eventually showed that the screws were moving a bit and were boring holes in my tibia. Dr. Carbonell put me back in my boot, and then got me fitted for a brace that would give me some support—all in hope that somehow this was going to work out.

By the end of May, I was convinced that something had to be very wrong. We looked

at my x-rays and saw something new . . . the cadaver bone in my ankle had collapsed. My tibia was out of place and the screws were causing part of the tibia to shear away from the shaft. I was relieved to see that my pain was being caused by an actual problem. I thought I was maybe just being a baby about normal fusion-recovery pain.

Anyway—Dr. Carbonell put me in a cast and said that I would stay non-weight bearing for at least three months while we waited to see if the bone would solidify again.

At this point, it seemed clear that I really needed to see some orthopedic surgeons to discuss the next step. I spent the beginning of June navigating the big world of orthopedic surgeons.

The main doctor I really wanted to see didn’t take my insurance, but his appointment guy, Enzo, took pity on me and started pointing me in the right direction. “No—he sounds like he would be good but he really only does knees. No—don’t go to him—he only does ankle trauma—you will just see him and he will send you to someone else. Yea—he is really good. He does all of the really difficult ankle surgeries.” I wouldn’t even bother trying to get into an office unless the doctor had been “Enzo-approved.”

After living in the kind and friendly fishbowl of Dr. Carbonell’s office for 18 months, it was weird starting fresh with other doctors. You practically had to send flowers and chocolates just to get them to consider giving you an appointment! In the end, I had three appointments for the end of July.

So—knowing we had about a month to wait before we could do anything—we decided to get busy! We went on a family vacation to Curacao, and later travelled to Michigan for two family reunions.

During this waiting time, I really needed a chance to sort out some things in my head. Was God disappointed with how I was handling this situation? Was I not praying enough? Did I not have enough faith? Was I trying too hard to be in control?

When I first got hurt, so many people would come to me and say, “Oh my goodness, Anne! What a terrible thing that has happened to you!”

And I would say, “Oh—it is OK! I will be all right. God has a plan . . .”—and I meant it with my whole heart! Everything really was going to work out. I believe that still.

But about a year after my fall, when I was using my cane but suffering from so much pain, people would see me and say, “Oh, wow! You are doing so much better! Our prayers have been answered! I just knew you were going to be OK!”

These comments put me into panic. No—I was not OK. This was not good. I may LOOK like I am doing better, but this is horrendous.

For some reason, I just couldn’t lie and say, “Oh, I know—aren’t I doing great!!” I would say something depressing like, “Oh, but I really am not doing that well. I am in a lot of pain.”

The minute it came out of my mouth, I felt like I could read their mind . . . “Well, no wonder she isn’t doing better—she isn’t focusing on the positive.”

In Curacao, I tried to think of a better response. This is what I came up with: “We are still struggling with the healing of my ankle, but I know that—somehow—I will walk again someday.”

Nice. Honest. To the point. Hope for the future.

But Doug—never wanting me to give up hope—would say, “Why do you have to say, ‘somehow?’ That makes it sound like you are planning on an amputation or something.”

OK—fine—I will take out the “somehow.”

Next time I tried it out, Doug says—“What do you mean you will walk?!? You are going to dance, Baby--DANCE!”

“Good grief, I don’t know if I am going to dance! Right now I am just shooting for being able to walk!!! Let’s be realistic!”

I always felt like I was being corrected for being realistic. This was not going to be easy. It was obvious that when they told me this was a “catastrophic” injury—they weren’t saying it to be dramatic. Yes, I am strong. Yes, I am always going to try to have a great attitude. Yes, I fully believe to my core that God has an amazing plan for me. However, I also realize that my life will not be the same again. We can sugar-coat this all we want, but my foot will never be like it was.

But was that the wrong approach? You always hear of people who experience medical miracles. Was I shortchanging myself by being realistic? I have always loved the verse saying that God can doimmeasurably more that you could ask or imagine. Was I not allowing myself to imagine myself dancing with a perfectly functioning ankle? If I did—would things start to work out differently?

When Doug’s Dad was sick in the hospital, Dad said, “My prayer is that I can be at peace with whatever God would have happen in my life.” That struck me so much—I have never forgotten it. That is how I feel. I am truly at peace with whatever happens to me.

But—apart from having a good attitude and doing all I can to get better--do I have some sort of power to determine the outcome of my healing? Am I expecting too little to simply be content and at peace with whatever happens? Is God waiting for me to have the faith to plead for a miracle?

Honestly, writing this right now, I still don’t know. And for that reason, I always have a little shadow of guilt hanging over me as I go on this journey.

Anyway—I realized how easy it is to trap people in the dreams and hopes you have for their lives with our friend, Elaine. She is a lovely woman at our church who always leaves the most encouraging messages on our phone letting us know that we are in her prayers. She fell a while back and was in a health-care facility for months. During this time, she was in a large neck brace, confined to bed, and unable to walk.

Well, I come in to church the other day and there is Elaine, using a walker to move across the church and holding her head up on her own power. I was so shocked and thrilled to see her I exclaimed, “Elaine! Oh my goodness, you look amazing! I can’t believe how great you look! You must be so happy!”

As soon as I said it, I could read in her eyes that she was not feeling what I was saying. In fact, she looked terrified. All of a sudden I realized that I was projecting my feelings on her. I quieted my voice and came to her and said, “Elaine, I am so happy to see you. How are you doing? Has this transition been hard?” She opened up so quickly and began telling me how scary it has been to come home. That she feels like a burden to her daughter who is now caring for her, and feels uneasy away from the hospital. She talked about the pain that she is now managing on her own without nursing care.

I couldn’t believe that I had almost missed an opportunity to encourage Elaine. She needed me to ask her how she was feeling—not TELL her how she was feeling. Even though my initial intentions were good, they were not what she needed at that time. I am grateful I know that now.

OK—enough mental rock-tumbling—back to basic info . . .

About two weeks ago, I got ready for my big appointments by having a CT scan done in advance, collecting all of my current X-rays, making multiple copies of my surgical reports, and creating a nasty photo album featuring our favorite shots of my infected, mangled ankle. (I can send you a copy for your coffee table if you like.)

Within three days, Doug and I had sat with multiple doctors and were given the same news over and over (thank goodness, really). We left the experience feeling like we had been hit in gut, BUT also extremely grateful for the expertise of the doctors that we were meeting with. We feel like we are in very good hands—no matter what our final decision might be.

Here is what they said . . .

1) The fusion surgery that I had in November failed. The talus was unable to produce bony tissue to create a bond with the tibia and the calcaneus. My talus was also unable to grow in and through the cadaver bone. That is why it collapsed and why my ankle is a big piece of mush right now.

2) The talus portion of my ankle is most likely still infected as is rapidly dying. It is getting only about a 5% blood supply, so it will never be able to heal or generate new bone. It needs to be completely removed soon. This will obviously render my ankle completely useless.

3) My options are simple . . .

a) Have a below the knee amputation.

b) Have a rare surgery called a tibiocalcaneal fusion and tibial lengthening with external fixation.

Both of these options clearly have some drawbacks. However, I am ready to take on the difficulties either of these options will throw my way and know that I will be better for it. It is all do-able!! Go! Fight! Win!

Here is the problem . . . which one do I choose?!?!?

I’ll tell you what I have found out:

Amputees are amazing. I have spoken to more people who have a laundry list a mile long of the things they have done with their prosthetic leg. Most struggle with phantom pain and manage it with various drugs such as neurontin, lyrica, and/or oxycodone. It is very important to take good care of your amputated limb (I found out quickly that people don’t like to call it a “stump”—my bad). Most have given up using the leg cover things and just like to walk around showing the inner mechanical workings of the prosthetic. Some always wear long pants to keep it discreet, others are proud to show their leg. Prosethics are very expensive and usually involve a certain amount of finagling with insurance companies. Most talk about the annoyance of having to use crutches to go to the bathroom in the middle of the night, or needing to take their leg off to go in the pool. But other than that, most say that having an amputated limb has not held them back one bit.

To date, I have not been able to talk to anyone who has had the tibiocalcaneal fusion (we will call it the TC fusion from now on, OK?). Dr. Hutson, at the University of Miami is the expert on this surgery and would perform mine if I chose to have it. He said that they would first go in and take every shred of my talus out of my foot, stuff it full of antibiotic beads, and put me on IV antibiotics for a week or two to make sure that any infection has been killed. Later, I would go back in and they would attach my tibia to the calcaneus. This would all be held in place with a large external fixator which would press the two bones together so that they would hopefully fuse within about 4-6 months.

Now—removing the talus would create about a two inch discrepancy between the length of my two legs. Therefore, they would use the fixator to slowly stretch my tibia. Over about 9-12 months, I would turn a small crank on the fixator every 6 hours. The pins going through my bones would pull on the bone and slowly persuade it to grow longer. In time, my tibia would eventually grow the two extra inches of bone that I would need to be even on both sides of my body. They say that there are lots of complications to plan on (intense pain, infection of pin sites, weakening of the tibia, non-union of the calcaneus and the tibia)—but that most eventually end up with a good result within one or two years.

All of the doctors say that the TC fusion would leave me with a “salvaged” foot (such a positive term). My foot would never flex or bend. I would definitely need to wear rocker bottom shoes (no biggie) and would probably need an ankle brace for support. I would never be able to jump, run, or walk quickly because of the strain it would put on my metatarsals and knee. In fact, these parts of my body would most likely become arthritic within about 5 years of the surgery. However, with this option—I would STILL have my own foot.

There they are—my two options.

Since getting this news, my heart has felt like a clenched fist.

My first concern was that I was going to mess up yet another school year by being out on disability two months. However—once again—the school has been incredibly supportive. Such a blessing.

The girls went on a four-day road trip with my parents right after we had these appointments. This was wonderful because it gave Doug and I time to process, brainstorm, research, grieve, plan, and pray. One minute we would be leaning towards one option, and then suddenly the other option would seem more favorable.

If someone just told me I had to do one or the other, I would be ready to go with gusto. But having to decide between one or the other has been tough.

I grieve that Doug and the girls will have to endure more upheaval. I think the worst is that the girls have to keep hearing about it all the time. That is one reason I am writing this massive novel right now because I just can’t keep walking around explaining the whole ordeal to people again and again. It is too hard for the girls to hear—and frankly—kind of hard for me to relive again and again. I need a little mental space from it now and then just to feel like I am not drowning.

We were pulling in the driveway the other day and Elise suddenly said, “Mom—I think you just need to chop your leg off. We have been dealing with this for a year and a half and we are sick of it!” She slammed the car door and marched in the house. But this morning she said to me, “Mom—maybe you should first have the surgery and then see how it goes. If you don’t like how it turns out, then you can have the amputation.” She waffles back and forth just like me.

Annika just wants to make sure that we make the final decision together as a family. She doesn’t want anything happening without having had a chance to hear the pros and cons and sharing her own insight into what she thinks should happen. After all—it affects them just as much as me.

I called Dr. Carbonell and he absolutely agrees with what these doctors have said. I have so appreciated all that he has done for me and so it feels good to me to have his blessing.

I am having a follow-up appointment with Dr. Hutson on Monday—just to have a chance to ask him some more “quality of life” questions about the CT surgery, and to inquire about an “Ertl” amputation that claims to cause less phantom pain. I also want to get the names of some people who have had the CT surgery so I can talk to them.

So many people have already tenderly shared their own concerns and ideas about each option. People on my ankle fusion support groups (they actually exist!) have all written me to share some of their personal experiences. I have googled so far into the dark corners of the Google dimension to find as many medical papers written about this topic.

Doug assures me that we will come out better because we have gone through this—but I still have such a heavy heart. I’m not really sad because I feel like both options are really quite do-able. I just dread that we might later resent or second-guess our choice.

In all honesty—I am not leaning one way or the other at all. I genuinely have absolutely no idea which way to go (fantastic!).

So, we wait, listen, research some more, look for signs from God (Cloud formations spelling out the letters CT? A funky new line of art-themed prosthetic legs?), and pray in earnest that God would lead us to a decision that brings us peace.

We have a few weeks to reach a decision.

Again, I thank the Lord every day for each of you. We treasure your prayers, encouragement, and love.

With so much love,

Anne