7 March

A Big Health Care Meeting Tuesday. Should I Have My Hopeless Toe Amputated? I Have Two Weeks To Decide

by Jon Katz

I’ll be honest. This was a tough one to write. It was a big healthcare day for me and a surprising one. I have two weeks to decide whether or not to amputate the big toe on my left foot. I think yes.

Tuesday was interesting from sunrise on. First thing in the morning, I read a New York Times story that explained why I’ve been so sick lately. I have long Covid, I see. My immune system is still weak.

We drove all over Saratoga Springs.

First, we had to return a faulty Mansion robot cat to its manufacturer. Then I read and heard about Long Covid and realized my various illnesses were quite connected.

Then, I went to the hospital for blood and urine tests and finally to the highly respected Saratoga Hospital surgical podiatrist for a visit that turned from routine to much more than that.

I was still sick; my problem turned out to be a urinary tract infection, as I suspected. I tested positive for it. That followed bronchitis.

But this was all small stuff. The big story is my foot and a renegade left big toe, which can no longer move up or down and keeps drawing callouses that trigger an ulcerated wound that won’t heal.

I just got a new brace to straighten my foot, which is so flat it is medically considered a collapse.

The toe has made walking up and down hills impossible, left me in special surgical shoes for much of the time, and has continuously created severe callouses. The toe is a wheel that keeps on turning but can’t seem to stop.

The toe is somewhat curved,  pressing against any shoe I wear. The toe doesn’t work anymore. It’s a danger to my foot. Because I am tall and heavy, the pressure on my flat foot is significant, especially the out-of-position toe.

We have tried about everything – antibiotics, special orthotics, advanced orthotics, and braces halfway up my leg. Nothing has worked.

The problem is not diabetes; these ulcers have nothing to do with diabetes.

I’ve seen Dr. Daly every three or four weeks for these two years.  The staff feels like family. I know them al and always bring them cookies from the Amish.

Dr. Daly is business-like and efficient; she trims and scrapes the callouses, usually causing the foot to bleed.  That means more surgical shoes and antibiotic ointment, bandages, and tape.

She worries that the toe has become an infection landmine since it is so easy for a foot to step on the wrong thing. I’m afraid too. Looking ahead, I don’t see the benefit of fighting for this toe for the rest of my life. I can’t win.

Until recently, I was determined to save it. The idea of losing a toe was unthinkable to me just a little while ago.

I had surgery at one point (we thought it was a bone spur) and was on special antibiotics.

Although I fiercely resisted this idea for a long time, I want to look ahead and live without letting a useless toe mess it up. Aging requires thinking forward. This is not how I want to live.

I believe strongly in radical acceptance, which I must embrace to move forward with my good life rather than lamenting what I can’t do anything about.

I didn’t expect this decision to come up today. I thought I had more time to try more things.

But I saw the reality clearly as Dr. Daly scraped the callouses and scabs, and a nurse prepared another bandage to stop the blood.

Dr. Daly, a podiatric surgeon, discussed yet another failed effort to get the ulcerated wound to heal. The new grace has been great and has helped me to walk. But it wasn’t enough to contain the toe.

The wheels began turning in my head. We had to do something else, something bold.

We started talking about options for the future. She mentioned amputation as one of the five or six possibilities, but she never recommended it or urged me to do it.

But bells started ringing in my head; I am not blind. I can see the road ahead. I can handle the truth.

Staying healthy is demanding for any 75-year-old in America. I need to take the long view as well as the short. Nobody else can do this for me; I must decide for myself. I will also talk to Maria and Dr. Daly about it and my primary caretaker, but I know it’s my responsibility. It’s my toe.

I surprised myself by asking Dr. Daly what she thought of amputating the toe. It was the first time I mentioned it aloud when it wasn’t a joke. I used to end every visit by jokingly suggesting to the nurses that we might just have to see the toe-off. They always laughed.

Suddenly, it isn’t a joke.

Dr. Daly was ready for the question and said she had no problem amputating the toe.

She has done it often, and it is a safe procedure.  I wouldn’t need to be put completely under; she would only numb the legs and feet with local injections from the waist down.

I would be home in my bed asleep (hopefully) that same night.

Dr. Daly thought amputation would improve my walking stamina and comfort and not interfere with my movement or take away from it. Simply put, the collapse of my foot to one side has pushed the foot out and away, and the brace is helping to strengthen the foot. It’s about mechanics, not toes. The toe is a casualty.

But nothing helps the big toe or makes the callouses go away.

Dr. Daly said she was completely at ease doing it, it is a one-day outpatient surgery, and I would be home in a couple of hours after the operation and in an s surgical boot for about three weeks.

She said even though I had diabetes and some reduced circulation, I heeled quickly and well, a sign of solid circulation in my feet.

I looked over at Maria, and she just nodded and smiled. Yes, I could hear her thinking.

Dr. Daly asked me to take two weeks to think about it and talk to Maria about it, and we would discuss it then and make the final decision during my next visit to the podiatric clinic.

She thought the surgery would save my foot from infection or other problems.

Dr. Daly suggested some adjustments to my brace to make walking even easier. We’re going to see David on Monday morning to make those changes to the brace.

I don’t mean to sound as if this is an easy decision. It makes me sad, but I feel clear about it.

It does feel like a shocking thing to me. I keep hearing this voice go around and around in my head, I want to get on with my life.

This is the nature of life. This is a part of getting older.

I judge myself not by the absence of trouble and pain but by how I respond—another landmark chapter in my life, perhaps even a warm-up for the future. We tried and tried.

Maria and I reviewed the decision a score of times on the way home. We are very much on the same page.

And Thursday, we will be off on our one-day vacation to our favorite inn in Vermont or anywhere.

My conversation with Dr. Daly was not discouraging or depressing but liberating. It felt good to see a way out of this.

I was relieved more than anything else. Tonight, I feel low but not confused or uncertain.

Human doctors are like animal vets in one way; they don’t push decisions like this. They wait for the patients to bring it up. They often wait too long.

Dr. Daly wasn’t the one who recommended this.

She was waiting for me to do it.

I trust her completely. My foot could not be in better hands.

It’s time to change the script, I said, and get on with my life.

Not even one of my big toes will stop me from doing that.

I’ll share the process as always.

It is both liberating and sad at the same time; my toe has been with me all of my life.

I texted my daughter Emma right away.

A dry-humored wise-ass Yalie, she texted almost immediately after recovering from some shock:

The real question is are they gonna let you keep the toe?” she asked. “I imagined you pickling it in a jar of formaldehyde.”

Very funny, I texted back. But I was laughing.

I wasn’t sure she was kidding— That says much about our history and relationship.

I can’t say I am torn. I’m not.

I can’t say I’m confused. I’m not.

I am allergic to drama and denial.

I am incredibly fortunate to have a supportive partner and the best foot doctor I can imagine to help me through this.

And I’ll have an excellent extended meditation tonight and tomorrow. I won’t have to wonder what to think about.

(Tomorrow, part two (three?) of health week. I go see the retina specialist about my eyes and the growing possibility that I need cataract surgery. I hope it’s calmer than today.)

20 Comments

  1. Thank you for this. I have had 7 vertebral fractures in the last 2 years and it’s been recommended that I go on a medication with a dreadful side effect profile. I’m 70 and also dealing with figuring out how to move forward. It’s hard.

  2. You have the most skilled and compassionate people around you, it will remove a very serious threat to your well-being and best all it will take a half a day and won’t hurt! Amazing.

  3. I’ll put in my two cents’ worth (if it’s even worth that much 😉) and say go with your gut instinct. I suffered for years with sore shoulders due to having too much of a good thing up top. I thought breast reduction surgery was ridiculous for a discomfort that was annoying but not exactly earth-shattering. Once I went ahead and did it, I couldn’t believe the relief. I told my doctor I’d been an idiot should have had the procedure 20 years ago and she winked and said “Told you so”

  4. “I judge myself not by the absence of trouble and pain but by how I respond…” this is evidence of emotional and spiritual maturity, at least that’s what I’ve been taught from the beginning of my journey in recovery. There are no vaccinations that prevent troubles from happening. Trouble and pain are inevitable, and developing the skills to navigate them is how we grow. Thank you for sharing your process to develop your skills, Jon.

  5. I am several years older than you, Jon, but you are my mentor when it comes to dealing with the issues of aging and how important a thoughtful and positive response is! Thank you for being you! And thank you for sharing your thoughts with us – your appreciative blog readers.

  6. Amputation sounds like a big deal but really it’s no different than having internal bits removed, right? It is hardly disfiguring when our foot is in a shoe and if it has benefits, why on earth not. I almost had my right index amputated years ago when it got badly infected. The doc couldn’t get on top of it after two surgeries and it hurt so much I was ready to say “off with it!” But a friend wouldn’t let me. A long course of antibiotics finally cured it. I think the hand would work just as well without it but I guess my friend thought it wouldn’t be pretty. Not sure I would have cared. But maybe I would have kept the finger in a jar!

  7. I am interested in the long Covid issues…. Very interesting observation on your part. I will leave the toe question to other commenters..

  8. Jon,
    I can’t offer advice about what to do. You will make the right decision. I want to thank you for your very open life and my years of living vicariously through your writings. I can only offer whatever spiritual connection a person gives to another facing a serious procedure. And then words are never enough. It seems you have a great support group around you and that makes all the difference in the world. My best to you and Maria and I hope to see you walking and doing stories for a long time.

  9. Wow, that’s hard! But I bet you will feel much better if your body doesn’t have to keep spending energy on endless “infection control.” Good luck and I hope, whatever decision you make, you can get some relief.

  10. I am so proud of you, and your health care team seems amazing to allow you to come to your own big choices and direction for your own body. I did tear up a little, as I imagine how hard it is to say goodbye to a part of yourself. I’m glad you have Maria to support you and your beautiful farm and animals. It will be the perfect healing place. I know you are making a wise decision for yourself and will send lots of good healing energy your way. I think your body is grateful you are listening to it so well. Pease and love, and hugs.

  11. I just discovered you and all your beautiful flowers today. As I scrolled down through the blog, I came to amputated toe, and I was like WHAT? I loved your thoughtful, brave approach to this matter. I am also 75 and dealing with more doctor visits than I would like. Cataracts – done. Knee replacement – done. Your story has lifted me and given me hope and gratefulness for the quality of life I have. Blessings on your toe journey my man.

  12. I visited a neighbor yesterday who was barefoot. After 15 minutes I noticed she only had 4 toes on her
    right foot. She said, I only have four on the left foot too! She’s lived without them just fine for several
    years, but they did affect her balance initially. Good luck, and good riddance to that pesky toe!

  13. That toe sounds like more trouble than it is worth and like you have just about decided what is right for you. And if cataract surgery comes around, rest assured that it too is an easier process than it sounds and will make a big difference for you if that is what you need. Here’s to facing forward into the future!

  14. As someone who watched a loved one go through foot ulcers that had nothing to do with diabetes resulting in the removal of one toe, it is nothing to be feared and everything to be gained. Bless you.

  15. My husband just had cataract surgery. It took about 15 minutes, he was obsessive about his eye drops, both before and after. He no longer needs glasses, except for reading. I’d say that’s a big win.
    When your toe is removed, your balance may be off initially. But your body learns to move without it. Good luck on both!

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