Tuesday, July 1, 2008

Don't Waste a Moment

A friend of mine just asked how Ron died so I figured many of you may also be wondering. Ron died of non-Hodgkin's lymphoma.

Ron was very healthy! He rarely took a drink. He never smoked. He ate right (most of the time). He exercised regularly. In fact, he was a member of the Mountaineers, a mountain climbing group in the Seattle, Washington area. Because he climbed mountains and slept in caves that he carved in the ice on the side of a mountain, we dismissed some of his symptoms thinking they were a result of no sleep and harsh conditions. He had been complaining of night sweats, itchy skin, and a racing heart. We thought the itchy skin might be an allergy so I kept changing laundry detergents. Then he lost his voice. After a week went by and his voice didn't improve, he went to see a doctor. Initial X-Rays showed a growth on his thymus gland. A biopsy confirmed cancer.

The next step was the staging process where they look at your entire body to see if and where cancer might be. The doctor did not order a bone scan, which I later learned should have been standard procedure, so they did not find the cancer that was in his hip. Ron was treated with six rounds of chemotherapy followed by radiation for the tumor on the thymus gland. The tumor responded so well that after two rounds of chemo, it was almost completely gone and we celebrated a miracle. It was during the radiation treatments that he started to experience the pain in his hip. Evidently the chemotherapy was keeping the cancer in his hip from growing but it wasn't killing it.

After a few failed biopsies and a second opinion, we learned that the cancer had been in his hip from the beginning and that, if the doctor had been aware of this, Ron's treatment would have been very different. By the time it was discovered, the cancer had started to spread. It was in several of his organs and he was no longer a candidate for the treatment that could have saved him.

We rode the up and down emotional roller coaster for a year and a half before Ron took his last breath. I don't know what would have happened if the doctor had ordered a bone scan in the very beginning and I don't want to look back and say "what if." I had doctors telling me that I had an open and shut case against the doctor who made this error. I even began ordering copies of all of Ron's medical records so that I could sue. But, somewhere inside of me, I felt that I would be getting paid for his death and this didn't seem right. Now... maybe I should have. This would have paid for Nick's college. But, at the time, I just didn't feel like I could do it. I was told that I would have to relive everything and I didn't think I could go through it again.

Instead of suing, I went to the doctor's office and asked to speak with him. He came out of his office and, in front of his nurse, the office staff, and the people in his waiting room, I balled my eyes out. I told him that I would not sue him but that I wanted him to remember Ron every time a new patient came in. He listened to every word as I poured my heart out. I gave him a picture of Ron with our sweet three-year-old son on his lap so he could see exactly what was taken away. With tears in his eyes, he gave me his word that he would never forget. I don't believe that he could. He knew that he had made a mistake. I tried very hard to remind myself that everyone makes mistakes. None of us are perfect. His mistake may very well have cost a life. But, this man will remember Ron every time a new patient comes to him for staging. He will never make this mistake again.

OK - why did I take the time to share such a clinical (and painful) chapter of my life as a result of one simple question? Well, for a couple of reasons. First, I was surprised when we found out that itchy skin, night sweats, and a racing heartbeat were very typical of lymphoma. Had we known, we would have been on the doctor's doorstep on day one! So, consider part of this post a quick medical lesson. If you know or hear about anyone with one or more of these symptoms... make sure they see a doctor immediately. Early detection... etc.

But, most importantly... I learned first hand that life is precious. Only God knows when you will take your last breath. Because Ron's death wasn't sudden, I was able to tell him everything that I wanted to say. He knew how much he was loved and this comforts me. I don't have regrets. His family was able to say goodbye. Not everyone has the opportunity. A sudden tragic accident can change your life forever. I know it sounds corny and I'm sorry if I sound like a Hallmark card but... tell the people you love how much they mean to you. Don't waste a single moment.

4 comments:

Chef Diane said...

Leann,

What courage you have to share with others about your husband's journey. My heart hurt reading this and I just wanted to hug you. The restraint you had with the doctor was God's grace. You may never know the result until you get to heaven's gate.
The ability to move on and to tell your story will inspire others. Please don't stop sharing it!
If we were to take each women aside at the She Speaks gathering and asked them their story the one common thread would be God's Grace. It will always amaze me of his goodness and mercy.

God Love you my friend,
Diane Applewhite

Luanne said...

LeeAnn,
Thanks so much for this post. I wish I would have read this years ago. Those symptoms...let me tell you I had them all. My night sweats we chalked up as the beginning of menopause. The stiff aching joints made the doctors put me thru every blood test possible and I had bumps on my skin that when biopsied, came back as nothing. When the itchy skin began it drove me crazy and they sent me to a dermatologist-a form of Eczema the biopsy read. But the doctors words to me were "I don't want to alarm you but often we see this in patients that later develop cancer.

All the symptoms should have added up but they didn't. On Mothers Day 1999 my arm pit hurt, but since I'm pretty chunky nothing felt amiss. Luckily I had an appt with my rheumatologist the following day, the pain was gone and if the appt would have been 2 days later I would have forgotten all about it. But when he felt under my arm his eyes got huge. "I think we finally have something" and he sent me for a biopsy which was diagnosed as “Hodgkin’s Lymphoma”. 3 years of symptoms and I by that time I was at Stage 3B.
My regular doctor was beside herself playing the hindsight game. Maybe she should have caught it earlier, but ultimately it was in the true physicians hands.

Funny, you should post these symptoms today. Yesterday I posted something for Leila Chealey’s bible study on Lysa's book What happens when women walk in Faith.

My thought was to do a series of posts on the methods God used to prune me and in the first post I mentioned my cancer including the symptoms. But after posting it I took it off when the doubts Lysa talks about came flooding in. Now today after reading your very wonderful post I decided to suck it up and post if for no other reason than you mentioned. Thanks for your great post and the push.

Hope you are rested from the conference and life has returned to a normal

Luanne
http://firsttea.blogspot.com/

Linds said...

LeAnn, thanks for writing this. I had a meeting with one of the doctors involved with my husband's care yesterday, which went really well. He is the one who tried to fix him, after everyone had made their mistakes. It was a good meeting.

I also felt God was prompting me to give him a copy of "Do you know" and he asked for my permission to use it in the training of doctors at the massive hospital where he works.

Maybe it will make a difference to a generation of new doctors.

Blessings
Linds

Kitty @ Four Toms and a Mom said...

Leann, you are so brave to share your story about Ron and the journey that the two of you took through the difficult illness and losing him.

We can never really know if a simple symptom is something really awful, especially if you are tryig to get the help of physicians and somehow the real culprit never comes out.

My husband died of a massive heart attack. We thought he was healthy. But now looking back I can see all the signs.

Our first indication was four months earlier, when an EKG taken by a life insurance company revealed odd results- the company actually denied his coverage, only agreeing to finally cover him when his physician checked him and said he was fine.

Tom complained all summer about sore ankles in the morning. Seemed he told everyone about it, but no one, not even doctors noted that this was a classic sign of conjective heart failure.

I sometimes get so mad at myself for not pushing it. When the doctor said he was fine, I told him I didn't beleive it. I told him that obviously the life insurance company didn't think so.

I also get mad at myself for being such a sweet wife and not telling him that he was gaining weight. I remember noticing that his chest seemed so large to me, and that was odd. I thought he was just eating to much, but now I look back and think - his belly wasn't bigger, why couldn't I ask why is your chest getting so big? That and the swollen ankles should have been a big clue.

But just like you, I went to his physician afterwards and had that talk with him. I told the clinic that I didn't want another family of little children to go without their dad because the doctor blew by obvious symptoms and didn't take it seriously when a life insurance company didn't like the results of an EKG.

That's when I found out that the doctor had shed many tears over my husband's death. I could see the remorse and the lessons learned, and that's all I wanted - to make sure that doctors are really checking closely when signs are so obvious.

All in all, I just don't do to many what if's. I figure that Tom's days were numbered and it does no good to imagine what life would be like with him here. I miss him terribly, but if I accept the role God has placed here in front of me, I can begin to find joy and move forward.