September 19, 2010

Hello! So many of you have been writing to say that you need an update! Well, up until now, you really would have only heard the depressed ramblings of a thoroughly confused and lost woman. However, in the last few weeks, things have quickly come into focus. I am at peace and feel like I am beginning a new journey that will bring about a new celebration of life for my family and me.

I have scheduled myself for a lower leg amputation on September 29 with Dr. James Hutson of the University of Miami.

OK—Don’t panic. Don’t start dialing my number telling me to rethink this. It is OK. Trust me.

Since my last update, we have researched, talked with experts, prayed, consulted with friends, received counseling, talked as a family, and done lots of soul-searching (If you want all the details, just scroll forward to “How we reached the decision to amputate.”). I must tell you that the last 5 weeks have been very difficult. However, there is such a peace and joy that has washed over us as we have finally reached a decision that we know is the right one for us.

I googled the “stages of grief” the other day because I was pretty sure I had been going through them. Yep, when I saw them, they looked very familiar . . .

Shock and Denial (fear, blame, confusion) – 5 weeks ago: “I haven’t prayed hard enough. I haven’t had enough faith.” “We never should have worked so long to try and save my ankle. If we had tried blah-dee-blah a year ago, I might be walking by now . . .”

Anger (frustration, anxiety, shame) – Soon after: “What will people think of me if I choose the surgery? What will people think of me if I amputate? Will people judge me for my decision? It is my choice—so if something goes wrong, it will be my fault.”

Depression and Detachment (overwhelmed, helplessness, lack of energy) – 3 weeks ago: “I feel like I am drowning. I am completely lost. I know I have to do something but I don’t have the first idea which one to choose. They are both lousy options.”

Dialogue and Bargaining (reaching out to others, struggle to find meaning for what has happened, desire to tell one’s story)- Last few weeks: Lots of research and talking with others.

Acceptance (Exploring new options, putting a new plan in place) – Last Monday: “I can’t say I am thrilled about it, but I feel very confident that my best option is to amputate.”

Return to Meaningful Life (Empowerment, Security, Self-esteem, Meaning) – Working on it as we speak . . .

It has really been in just the last two weeks or so that we have been talking like this is actually happening (I guess signing off on the pre-op papers at U of M sort of made it seem real, also!). The girls have been telling their friends at school and Annika posted it to her Facebook (therefore, the whole entire world was informed). My school is sending home a letter to parents this week, and I will talk to each of my classes next Monday to let them know what is happening. My sweet students have been praying for me for so long—I really want them to understand that this is a really good thing—not a scary disappointment.

Looking back on it, I think God was leading me to amputation all along—I just REALLY didn’t want to see it.

It is weird, but I have a need to say goodbye to my foot and thank it for all it has done for me. Lisa and I are going to take an impression of my foot with some dental alginate and then fill it with plaster. This 30-pound, size 12 paperweight will be sitting on my desk whenever I have the need to reflect back fondly on my foot. I am also going to start sifting through old photo albums and find pictures of my foot and me together. For some strange reason, it makes me feel better just knowing that I am honoring it before I get rid of it forever. The girls are also putting together a little “Farewell to the Foot” party to say goodbye to the past and celebrate our new future with high-tech prosthetics.

All of this may sound a bit strange, but I am allowing us to do what feels right. I read so much about the grief that amputees feel right after the amputation. Although having a “choice” to amputate was miserable, one good thing is that we have had time to prepare ourselves a bit for the loss. Most amputees loose their limbs so quickly due to tragic and sudden accidents--they are forced to handle both emotional and physical issues upon waking up from surgery. In fact, one of my prosthetists told me that I was the first patient he ever met who still had all their limbs intact! All this being said--I know that this is going to be tough for us, too.

We were all a little sad to think about what they would do with my foot after the surgery. Annika hoped we could maybe take it home with us and bury it somewhere. Dr. Hutson told me that many people feel the same way and--for emotional and/or religious reasons—want to keep the remains of the amputated limb. He said that we would need to make arrangements for a coroner to come to the hospital and have a private cremation. Sounds expensive. I think we will pass on that and just cuddle with my foot paperweight.

I feel so confident about Dr. Hutson doing my amputation surgery. He talks about “meticulously” tracing back each nerve and cutting it carefully. He says that he will make small holes at the base of the bones and reattached each muscle. Sounds neat and clean--I like that. With all that I have read about phantom pain, stump revisions, and infection—it makes me feel good that Dr. Hutson will be doing all he can to get everything back where it belongs. I also have the advantage that my lower leg is being surgically removed as opposed to being violently severed in an accident.

The surgery will take about 3 hours. This is about an hour longer than usual because I am requesting an “Ertl” amputation. This is where the tibia and fibula are cut, and then a small piece of the tibia is used to create a bridge connecting the two bones. This will make my stump stronger and able to bear some weight unlike traditional amputation procedures. Dr. Hutson showed me an X-ray of an Ertl that he had done on another patient (I couldn’t photograph it because of HIPAA laws—Grrr) and was thrilled at how neat and precise it all looked (the picture here is from the Internet—Dr. Hutson’s was much prettier). He really is an awesome surgeon.

Getting back to stages of grief—I feel like I am at the point where I can even joke about my future as an amputee. I think about the satisfaction of walking into my next Weight Watchers meeting and bragging about my sudden weight loss. How much do you think a lower leg weighs anyway? I go to Party City and see the severed, bloody limbs for sale and think, “I wonder if that foot would make a nice decoration for my Farewell to the Foot party?” Will I get my pedicures for half-price now?

But I am not ready for other people to get on the “jokey” bandwagon yet. You know how you can criticize and make fun of your own family, but if your spouse joins in and does the same thing you are suddenly hurt and offended? That’s how I feel. I am sure in a year or so I will be up for people suggesting that I dress up as a peg-legged pirate for our annual Book Character Parade--but not quite yet.

Honestly, I am at peace with our decision, but I am still not thrilled that I am actually going to be amputating my lower leg next Wednesday. It is not going to be easy. It saddens me that I am asking my family to go through another big upheaval. But I must tell you that I am looking forward to the future. I have such hope that I will be able to walk and run and be myself again. I have dragged this tired, infected, and partially dead foot around for so long now . . . I have done my best and it is time to move on.

We were in Palm Beach a few weekends ago and I had to watch Doug and the girls walk up and down the beach without me. It has almost been two years since I have been able to do the things that we used to do together. I want to get back to my life. I want to be able to run in and out of the ocean next year when we visit Palm Beach again. That will be me—wearing my water leg and being a Mom again with my family. That’s where I am at.

I have been inspired watching my Dad recover from a recent hip replacement. He has been limping for years--unable to roller blade, run, boat, or do all of the things he has always loved to do. In almost three short weeks, he is pushing his walker around like it is grocery cart at the store and beginning to plan trips and outings. (This picture is from the day he got discharged from the hospital. Don't we look like Dumb and Dumber?)

The bottom line is that I am in terrible pain and have been unable to function normally for a long time. The tibiocalcaneal surgery would be a two year process that would leave me with a foot that would be extremely limited in function. Walking would be difficult and eventually painful. Amputation leaves a lot to be desired but it is do-able. I am just so grateful that there is so much of my body that works great! My hands work, my head works (I think), I'm not dying--all is well.

I am tremendously grateful for all the people who have already offered to help us out during the recovery period. Our family, school, and church have once again been amazing.

I continue to covet your prayers for peace, healing, and freedom from pain.

I promise to update as things start to happen (two months on disability from work should give me more time to write!).

Love to you all, my friends.

Anne