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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.


How we reached the decision to amputate

Right after my last entry, I felt very convinced that the tibiocalcaneal surgery (explained in my August 9th entry) was the way to go. Yes, it sounded miserable, but at least I would end up with my own foot. Truly--in the last year and a half, I had had so many things attached to my foot, and had used so many gadgets to move my body from place to place—another year and a half was not going to be that bad. Easy schmeazy.

So, I went in to see Dr. Hutson to get some more information and get myself scheduled for surgery. Well, I sat with him and started going down my list of questions. Yes, not only would I be in the external fixator for 9-12 months, but also I would need to be in a cast, followed by a boot, followed by a brace for about another 12 months. He thought it would be at least 2 years before I could walk on my own. He was quite sure that my ability to walk would be fairly limited. He said that for the purposes of getting around my classroom or my house, I would be able to function. However, for example, when facing the need to get to the paint section of Home Depot, I might want to opt for the electric scooter rather than shuffle slowly to the back of the store (Hmmm . . .). Yes, my foot would become very arthritic, but we could deal with that when it happened. He said that he developed this surgery as a way to “salvage” the foot for those who found amputation unacceptable and/or came from cultures that typically ostracized those with obvious disabilities. In fact, of the 13 people he had operated on in the last 25 years, only three were from the U.S. Yes, he could probably get their phone numbers so I could talk to them about their “quality of life.” Again—whether going with the surgery or an amputation—I was going to have to make modifications to my lifestyle. However, with the surgery, you still get to go to the bathroom in the middle of the night without having to put on your leg.

OK—not quite the rosy presentation I was looking for but it still seemed like “right” thing to do. I went out and set up another appointment to sign the papers for the surgery but I would have to wait two weeks.

The next day I called Dr. Hutson’s office to get the phone numbers of prior patients. Sorry, his assistant was on vacation. Call in two days.

I called good ol' Dr. Carbonell to ask him about “quality of life” with the surgery option. No—he didn’t know anyone who had ever had the surgery. Yes--he agreed that I would definitely need to wear a brace for a long time—if not life-long. Also—fast walking was not going to happen. But he felt like my calcaneus and tibia “wanted” to heal and that the surgery could be successful. He explained that I could always opt for an amputation if I wasn’t happy with the results of the surgery.

I was determined to find a living human being who had had this surgery. I found one lady on my fusion support site that said that she had had the surgery two years ago and “she was able to walk a little bit more every day.” She said she really wasn’t sure about the success of the surgery because she suffered from other injuries (sustained during a car crash) that complicated her ability to walk.

I spoke to another man who said that he had had the surgery following a motorcycle accident. He said that he was a construction worker and desperately needed to get back to work following his recovery so he opted not to have his leg lengthened and decided to skip physical therapy. As a result, he could only walk by putting his foot out sideways (since the ankle does not bend). Although he walks with a very noticeable limp, he was thrilled that he could work at his construction job without using a prosthetic.

I started scouring the medical articles written about the surgery. Truly, if there is a contest somewhere for who can type the words “tibiocalcaneal arthrodesis with tibial lengthening using the Ilizarov frame” the fastest—I know I will win. Since I don’t belong to a medical school, I had access to the abstracts of many of the studies written on the subject—but not the actual full articles. Therefore, I had to pay about $20 for any one article. About $100 later, here’s what I learned: there are only a handful of people around the world who have had this surgery. Most have complications during the two-year process (infection/need to take more bone from another part of the body/non-union); however, most eventually had a successful fusion. All of the articles ended with some sort of conclusion saying that the patients were usually 80-85% satisfied with the outcome of the surgery.

But what did that mean? They were satisfied it was over? Satisfied that they could walk? If so—how fast? How far? How long? Inquiring minds wanted to know . . .

Meanwhile, I was stalking this assistant at Dr. Hutson’s office for phone numbers. After a few days of looking through files to even find the numbers, the doctor’s office needed to call the former patients to ask permission for me to contact them. A week later, the assistant assured me that messages had been left for all three former patients and that Hutson’s office would let me know when--and if--any would call back.

About this time, I was really feeling down. I kept trying to make a decision—but I really didn’t have the information necessary to make one. I felt very sure that the surgery was the “responsible” thing to do. It seemed reasonable that I should try it out, and then if I didn’t like the results—I could have the amputation then.

As the girls began talking to people about our options, we started getting some very negative responses. One day I took the girls to the pediatrician and the nurse asked the girls how their Mom’s foot got hurt. Elise went right into “information-sharing” mode and pretty much caught the lady up to speed in about 3 sentences. The minute the subject of amputation came up, the nurse said, “Oh girls—don’t let your Mom get an amputation. You don’t want her to limp at your wedding, do you?” As she kept talking, I managed to mutter something like, “Well, it seems like the prosthetics available now are pretty amazing . . .” To which she said, “But why would you do that when you can have your own foot?” And then again to the girls with, “You don’t want your Mom to limp everywhere she goes, do you?”

Good grief. Even though I knew this woman had no business talking to my kids like this, AND was obviously ignorant about my situation—I had such a feeling of guilt/shame about considering an amputation that I really felt like she was somewhat justified in showing her disgust.

Not that I was running around asking everyone what I should do—but it did seem that when people heard my options, they didn’t need to hear much to say that I should opt for the surgery. It got to the point that I felt I could say, “Well, they can take my foot, surgically attach it to my head, and within two years of physical therapy I could walk by hopping on my head . . . OR . . . I could have an amputation.” and the person listening would most likely say, “Oh, by all means—definitely have the surgery. At least then you will have your own foot.”

I started to feel the pressure of being judged for whatever I decided. Would people think I that I had made a rash decision if I went with the amputation? Would they always whisper that I hadn’t tried hard enough, or been patient enough to go through the process required for the surgery?

About this time, I decided that I was going to stop trying to make a decision. Rather, I was just going to research every option, suggestions, idea—whatever might lead me in the right direction. When people would say, “Oh, we have a friend who had the same problem as you . . .” I would get the phone number of the friend and call them—usually to find out that their problem was VERY different than mine. If someone gave me the name of an amputee, I would call and listen with an open mind. The burden I felt trying to MAKE a decision was lifted when I just allowed myself to research, listen, and let the decision come to me.

Talking with amputees was very interesting. Truly—you could not get these people off the phone. They were SO HAPPY to have their lives back. They all had very interesting and sad stories to explain how they lost their leg; however, all of them sounded the same when they spoke of the freedom, joy, and “new lease on life”-feeling that they had since adjusting to life with a prosthetic. Yes—going through the process of an amputation, stump-reduction, nerve-pain management, prosthetic fitting, etc. was difficult—but the quality of life that they gained as a result was worth the struggle.

When I heard these people speak, it became obvious to me that the general public did not understand how the life of an amputee was not this pathetic idea of a woman “limping” at her daughter’s wedding. However, I didn’t want to choose the amputation simply because it was the quicker way to get up and going again.

So—I started doing more research on the surgery.

I went back to the articles I had read and noticed that some of the doctors who had written the articles had their email addresses attached to the document. Ah hah! That night, I wrote to five prominent doctors and told them of my story, my predicament, and my search for information regarding “quality of life” issues. By the next day, two of the doctors had written me back! One summed things up for me by saying, “There is no question that you experienced a severe and devastating injury. Patients who undergo tibiocalcaneal fusions do not have a normal gait. The single most important outcome from surgery is pain relief. Below knee amputation can be a very good operation with a much shorter recovery. Fusion patients are satisfied about 85% of the time, but recognize they are not normal. If you look at AOFAS scores that range from zero (the worst) to 100 (normal person), fusion patients score about 55-60. Preop they are usually 15-20. It is a difficult decision to make.”

I wrote him back with a few questions. He responded with some polite answers with regard to the surgery, but ended by saying, “I think that with a contemporary prosthesis, you probably have a better chance of resuming normal activities.”

Just a few days before emailing the doctors, I felt so strongly that the surgery was the only responsible option. I think in my gut I felt that the pain I would endure by having the surgery would be a more “noble” suffering because I had chosen to do the “right” thing. However, if I chose to have an amputation and I had complications or experienced bad phantom pain—I better shut up about it because I was the one who “CHOSE” to do this to myself.

After getting insight about the surgery from someone who was highly knowledgeable about the subject, I felt the guilt of making a bad decision lift—and allowed myself to start considering both options in a positive light.

The next day, a Mom from our school called me to tell me about a friend who had had an amputation last November. I called her friend—Susan—and we started sharing our war stories of infection, wound vacs, picc lines—the whole thing. After about an hour on the phone, she said, “Why don’t you just come over and you can see how the prosthetic works and what it all looks like.” Wonderful! The girls and I got in the car and went straight to her house. She was amazing. There she was--walking barefoot through her home, navigating stairs, moving around her kitchen with ease—all with a prosthetic leg. The girls began sharing our story and she reciprocated with similar stories of her own. She asked the girls if they would like to see how the prosthetic was attached to her body. They eagerly said yes. Two silicone liners, a prosthetic leg, and a shiny human stump later—we were suddenly wrapping our brains around the reality of a lower-leg amputation. They were fascinated and amazed. She explained her routines for showering, and her method for getting in and out of the pool—but other than that—couldn’t say more about how happy she was to be able to function normally. While we were there, her daughter (aged 10) came home and talked with the girls. She was so proud of her Mom. She told Annika and Elise that if they ever felt sad about what was happening to their Mom, they should just give her a call. So sweet.

Driving home from Susan’s house Annika said, “Well, Mom. This is a no-brainer. You should definitely have an amputation.” Elise chimed in from the back seat, “Finally people are starting to see things my way! I said we should chop it off from the very beginning!”

Later, Annika caught me sitting on my bed with my head down. She said, “Mom are your feeling sad?” When I said yes, she said, “Mom, a year from now you are going to laugh. You are going to LAUGH that you even gave amputation a second thought. You are going to be just fine.”

I couldn’t believe it. Annika was always the one that wanted to be cautious and try the surgery first. But after meeting Susan, she could see things so clearly.

At this point, I was intrigued and encouraged—but not convinced. So I decided to start meeting some prosthetists. Long story short—I met with four prosthetists around town (my Mom, Annika, or Lisa even came along for the ride sometimes) and came away with basically the same information. 1) The fact that I have a knee makes all the difference. The function that you can have with a BK (below knee) prosthetic is almost 95% of a normal foot. The inside of the foot is made of carbon-fiber components and then covered with a plastic foot. 2) Although they work great, the legs are not cute. Not even a little. They look very plastic and fake. We would have to work on that. 3) A few months following the amputation, I would be fitted with a temporary leg that I would wear for about 5-6 months while the stump reduces to its final size. This leg would not have a cosmetic cover over the inner workings of the leg so it would look like a fake foot--attached to a pipe--attached to a big socket that would fit onto me. Once the stump is “matured” I would get a leg with all the bells and whistles—a high-functioning foot, axis ankle, cosmetic cover, split toe for sandals, and (if I like) a foot that will adjust to different heel heights. Pretty slick but still not cute.

Very interesting that each of these guys had some very similar personality traits: nurturing, caring, technical, artistic, practical, and “this is not a problem”-view of life. Every time I had another appointment, I would come back telling Doug that I had fallen in love with another prosthetist. They just make you feel very much like they are going to see you through this tough time—and insurance will pay for it. A guy who acts as your personal mental health therapist AND makes legs—what a combo. Who wouldn’t fall in love with that?

I looked into our health insurance and found that my insurance would pay for the first temporary leg and then the final leg. They would also cover to repair and/or replace prosthetics from normal wear and tear. The prosthetists I met with said that this means that you get a new leg about once every three years. I would really want to be able to have a cosmetic leg for every day wear, and then a leg that I could use when I was doing rougher stuff like woodworking, painting, gardening—or during a particularly messy week of projects at school. I would also want to get a water leg for days at the beach, swimming, etc. The prosthetists said that I might be able to convert my temporary leg into my second “beat up” leg for a couple thousand dollars. The water leg would not be covered by insurance and would cost about $5-8 thousand dollars. I thought I could maybe do a couple rounds of summer camp to finance my new water leg!

As I inched closer to thinking that amputation might be a decent idea, I would find myself quickly clinging back to the surgery option. I had to continually tell myself, “You haven’t cut your leg off yet—you are just exploring options. Chill.”

But as time went on, the panic I felt about making a decision started to subside and I started to feel real peace. I kept thinking that God would send me a big sign letting me know what to do. The harder I looked, the less I saw any sign of anything. But when I allowed myself to just openly explore, explore, explore and follow every lead that came my way, God actually led me to my final destination:


Never saw that coming.

There are so many pieces to this final puzzle that I didn’t go into detail to explain . . .

-All the calls to friends of friends, who had personal experiences with amputation or reconstructive ankle surgery,

-Finding my girls sitting on the couch happily looking through a prosthetics catalog,

-Meeting a physical therapist at a volleyball game who had experience with both BK amputees and patients recovering from ankle reconstruction surgeries (“Oh yea, your functioning would be much better with an amputation . . .”),

-Hearing the stories of people who personally know amputees who swim, run, walk—“and you would never know. . .”

-Discussing the phantom pain medications available with a middle school boy who lost part of his hand this summer during a boating accident,

-Marveling at the amazing abilities of a little girl in my Art class who was born without her lower arm,

-Sensing the deep desire of my family to put all this behind us and move forward in faith,

-All the friends and co-workers who made sure that I was seeing the best people in town,

-The faithful people who have also experienced ankle trauma (my ankle fusion support group friends, Sarah, Susan, and many others) and have given me lots of advice and resources,

-Being able to process the gazillions of thoughts and emotions that went through my head with friends, teachers and parents from school, and people at our church,

-The honest and straightforward emotional input from my girls, my parents, and Lisa (my friend and assistant at school),

-And all the late night talks with my dear, faithful husband--Doug.

Truly—this has been a journey. I know that it will not be easy. However, I am so completely confident that amputation is the right thing for us to do. We are not the first people to go through this and we will not be the last. God has been so faithful—He will not leave us. He is so good.

If you are still awake after reading all of this--bless you.

Love to you all!