Fear # 1 Vanquished

My stomach biopsy came back negative for cancer! YAAAY for that!  We're still concerned about what caused the stomach abyss...sooo...we'll be off to the Mayo Clinic when I get back home. 

Mayo *No. Not the condiment, sillies* is rated #1 in GI. SOOOO....Hoping to get some answers.

Fear

Before my mother died in February, 2014, we talked on the phone several days a week. She told me many times that, as a child, I was absolutely fearless. I am still that way...*Well. Except spiders* When I told her about my plan to swim the Macinac Straits next summer in July, 2015, she laughed, and said: I  believe you will. So. I am doing just that, as most of you already know. And I will finish.

I have been training like a fiend for months. Then I started feeling fatigued. I didn't feel quite right. I was nauseous, and my stomach often hurt. Then I started developing pain in my stomach. I ignored it for quite a while, and assumed it was due to the stress of the fund-raising. Then it began hurting between meals. I assumed I wasn't eating enough, and increased my caloric intake, and started taking vitamins. 

Finally, about three weeks ago, it became intolerable, so I made an appointment to see my personal physician. She examined me, an ordered blood work. A week or so later, I looked at my "Patient Portal" on my computer, and noticed all of my blood work was normal. A nurse phoned me, and told me that everything was "fine". I was put on a bland diet, and prescribed over- the counter Prilosec. 

No follow up was suggested. The pain continued to worsen. I went to st. Joe's Hospital and saw a Gastroenterologist there, who suggested an immediate endoscopy. 

The procedure was painless and quick. While I was still pretty groggy, the doc came in and told me that he had found a deep ulcer.  He told me he did several gipsies, because he was unsure of the cause.  I asked him to be honest with me, and tell me what he suspected. He was hesitant to talk about it, because he didn't want me to worry. I told him I was a big girl, and really wanted to know. He said there were several possible causes: but that he felt it looked like stomach cancer, but couldn't be certain until the biopsies came back. He said it would probably take about a week. 

The prognosis for stomach cancer is very poor. The treatment would involve surgery, chemo, and radiation. I appreciated his honesty. 

Now I wait. 

I pray that it is not stomach cancer. But if it is, I will refuse treatment. 

I WILL swim the Straits next summer, and I will finish.

I ask for your prayers, because now...for the very first time...I am afraid.

Winning

We all play games. A lot of us participate in sports, competitively, and otherwise. Most of us want to be at least competent at what we do. But. Winning is the siren's call.  It's hard to reject its sultry song.

By listening to this call, we forget about what is truly important. Do we love what we are doing, or, do we just participate because we excel? It's a question all athletes need to ask themselves. Constantly. 

I swim. I excel at it. But. At this stage in my life, I win by simply showing up. Period. In my age group the competition is quickly dissipating. The thrill is gone. I will continue to compete occasionally, but I get no joy out of swimming in a herd. I will occasionally compete in The Coastal Crawl. I will probably enter Chicago's Big Shoulders swim. But. I will do it for the experience of swimming in waters that I love. Winning? Meh.

My biggest joy comes from swimming in beautiful waters, alone with my thoughts, and the occasional camaraderie of another swimmer or kayaker.  The sunrises, the sunsets. The waters. Calm, or rough. There is a great freedom that comes with this. And there is the knowledge that I am truly swimming for the love of the experience. 

That is all.

Hump Day

I swim at least 15K on Wednesdays. Lane 3. That's where I will be. No weight training today. But. I will be doing a 3K LSD warmup. Then 10x200m sprints on the top. 10x100m sprints on the top. 10x50 meter sprints on the minute. Then 1650m with negative splits.   2x50m no breathers. 1K random drills. 1K cool down. 30 minutes of play. Did that add up to 15 K? Don't know. Probably.

Family

I love my husband. I love him more than he will ever know. He is my heartbeat. My best moment in time. He loves me despite my failings and limitations. I can be stubborn, and opinionated. He understands me. He "gets me".

I have three amazing children. They are each so incredible in their own way. My oldest daughter calls me almost every day, and we FaceTime with my beautiful, beloved grandson. Every conversation with them is a precious moment in my life. They live on the East coast. It seems so far away. But our daily conversations allow me to watch my precious grandson grow up.

My son and his wife are so happy on the West Coast. Knowing that they are happy makes me smile every day.

My baby. My wild child. Child of my soul, has finally found herself in the mountains of Colorado. Thinking of her with her snowboard cutting a line down the mountain, makes my heart soar.

Sadly, I lost my Mother last February. I often find myself wanting to pick up the phone to tell her something, and I get caught up in a moment of sadness and loss.

My Father died years ago. But. That is another story.

Now my family of origin is gone. There is no one left. No siblings. No one with whom to share old memories.

One thing I will never forget, were my conversations with my Mother in the years before she died. She would talk about my childhood. She told me I was absolutely fearless as a child.  When I told her I was going to swim the Mackinac Straits, she said: "I believe you will!".  So when I feel weak and alone, I remember her words.

The Truth About The University of Michigan Healthcare System

It should be noted that the experiences of which I speak, reflect only my own experiences with the U of M Healthcare Systems. Others have had similar, if not worse experiences, but I will not be taking them into account in this blog.  

My family and I have lived in Michigan for more than 30 years.  The new U of M Hospital was just being completed. Now, it is a giant, hulking, monster series of buildings that is consuming Ann Arbor.  Here are some of my experiences.

When I was a 30 something, my U of M doc, who had the bedside manner of a bridge troll, diagnosed me with a herniated disc at L5. I was referred to a surgeon at the Ortho Clinic in the U of M main building. He took one look at my X-Rays, and informed me that he could not perform surgery on my spine, as My discs were very badly degenerated. I was shocked. I was young! He simply left the room, leaving me no time to ask questions. I was sent home with a note to take ibuprofen every six hours. The pain was severe. I did as I was instructed. Several months later, I experienced severe stomach pain. I was referred to a Gastro guy, who stuck a camera down my throat and told me I had 5 bleeding ulcers. He sent me home with a prescription for Prilosec, which I took as indicated. I broke out with a severe rash. My bridge troll doc, advised me to discontinue the Prilosec. He could not tell me what to do next, so I fired him.  At the time, coaching a team of almost 150 swimmers with a bad back, and severe stomach pain, with two kids in tow, really weighed on me. My new doc...a "touchy feely" type woman was unable to advise me.  

I decided to retire from the swim team when I found I was pregnant with my youngest child. I missed that job. I missed my swimmers. I missed their wonderful, supportive parents. I simply could not handle the workload, the pain, and a tiny infant, with two other kids. The parents threw me a wonderful baby shower. Despite everything, those were the happiest years of my life.

After I retired, I went back to my roots, started taking riding lessons again, and eventually bought my own horse. I found that riding greatly helped my back pain. My youngest daughter, also took up my passion. It was a lovely life.

Several years later, I injured my wrist severely enough to sever the Median nerve. It took surgery to repair it. A year or two later, I developed a painful neuroma in my wrist. The Hand Surgeon at the U of M suggested a vein wrap procedure. They would remove a vein from my leg, and wrap it around the nerve. I consented. The surgery went well. Later that evening, I was admitted to a room in a surgical unit. During the night, a young aide walked by me, and noticed I was breathing very shallowly. She summoned help. I stopped breathing. My heart stopped. I remember watching the whole thing overhead. There was a lot of shouting, a lot of people...my heart was shocked back to life. The morphine machine had broken, and flooded my system. The next evening, I spoke to a nurse about this, as NOTHING was ever mentioned to me about this event. I was able to identify every person who had been in the room. None of this appeared on my medical record. What did appear on my record was that I had carpal tunnel surgery, varicose vein surgery, and a nerve graft. NONE OF THIS EVER HAPPENED! I have never had carpal tunnel syndrome, varicose veins, or a nerve graft. The next day I rarely saw a nurse. When I did, she had an "attitude"....complaining about her job...etc. I also vomited all over myself. No one would answer the call button. My roommate tried, as well. We both tried shouting, to no avail.  Over an hour went by. Finally, my roommate called an outside operator, who phoned the nurse's desk. Eventually, a young nurse stalked in, took one look at me, and said: "Oh shit. This is all I need." The next day the Hand Surgeon walked in, angry with the nurses for not having gotten me out of bed yet. I asked him why I had all the stitches on my arm. His reply:"oh. Your veins in the arm were too small. We had to remove one from your leg." I responded:"Well. Wasn't that the plan all along?  If you had asked me, I would have told you I have very tiny veins in my arms!" Without a word, he just stalked out of the room. I never saw him again. 

Over the years I have had a number of concussions. Most involved falls from horses. Once I was charged by a horse, knocked head over heels, unconscious. The barn owners were present, as was the farrier. They all saw it and called 911. EMTs arrived and carted me off to the U of M ER. I was on a gurney in a back hallway for 24 hours!!! With a TBI! I was refused food and water during this entire period. I was told that I could have nothing by mouth until I was seen by a Doc. The next day, I was forced to get up in my backless nightgown and make a scene, in order to get treated.  Finally, a young resident came back, and asked me if I was sure I had been charged by a horse....and we're there any "witnesses". I just stared him down, and asked him if he was sure he was a physician.

In January, 2010, I fell down our staircase at home, slamming my neck into the molding at the foot of the stairs, and slamming my head into the floor. Michael called 911. I was put on a backboard with a collar, and once again carted off to the ER. While there, I had very little understanding of what was going on. No one would tell me anything. They took the collar off after the CAT scan...then another Doc came by, and yelled: "Who took this off?!!!" I received two MRIs before they could pick up the fracture. When they finally did, they couldn't find a collar small enough. (In a hospital with a huge pediatric hospital) long story short...Motts Children's Hospital was a 15 minute walk, and no one wanted to take the time, so. For 5 days, I lay in a hospital bed with a hard collar that literally covered my nose, and was too loose to stabilize anything. After 5 days I was carted off to a nursing home, where I stayed for two months!  It was while I was there, though, that I found out that my previous bridge troll doc had mis-diagnosed me with Diabetes two years previously, based on one "non-fasting" random blood test. So I poked myself in the finger for TWO years, for no reason!!!

After I returned home in March of that year, I started suffering from severe vertigo. I went to my Doc, time after time. Finally, he told me it was just "stress". He referred me to Neurology, who couldn't fit me in until the following YEAR! I fired him, and had the same experience with two other U of M docs, until a friend suggested I check out the Vestibular Clinic at the U. They did extensive hearing and vision testing, noticing nystagmus when I positioned my head in certain ways. The therapists there told me it was an inner ear problem caused by my fall....THE most common reason for Vertigo. Unbelievable. They gave me some exercises to do at home, and the problem disappeared within two weeks. 

I finally decided to find a doc who was not educated at U of M. By word of mouth, I found my current doc, but it took 9 months to get an app't. It was worth it. She is a U of M doc, but was educated at Dartmouth, and had a holistic outlook.  

In 2012, I swam in an open water race up in Harbor Springs. It was a rough swim. I missed the one mile buoy, and ended up at the 2 mile buoy....so...I had trained for a one mile swim, and ended up swimming a two mile swim. When I returned home, both of my shoulders were very sore. I assumed swimmer's shoulder, and signed up for PT at the U of M Sportsmed Clinic. My left arm healed, but my right did not.  Finally, I was referred to an Ortho Surgeon, who did a CAT scan, and diagnosed me with a major rotator cuff tear. He said it was too large for him to repair. I was told I would need to quit riding, and stop swimming....that I should just "take it easy".  I was devastated by the news. I sold Sunny. My God. I sold my best friend.  After a month in a depressive state, I decided to take some action. I found the top ten shoulder surgeons in the country. Dr. Reuben Gobezie, Chief of surgery at the Cleveland Shoulder Institute performed surgery on massive rotator cuff tears routinely. Michael and I drove down to Cleveland, thinking I would be making an appointment for surgery. When Dr. Gobezie walked in the room, I was shocked at what he said next. He plopped down on the examining table, putting his feet up and said: "Julie. You do not have a major rotator cuff tear. Two of my colleagues, two of my Radiologists, and I both looked at your films.  You have a very small tear, which would be consistent with most women at about age 40, but physiologically, you are much younger. This tear is too tiny to even consider surgery."  He then did a very thorough examination of my shoulder. He said: "Julie, you have classic frozen shoulder. That is what is causing the pain." I told him of my desire to swim the Mack Straits. I asked..."How do I fix this?" He said simply: "SWIM!"  I wanted to jump up and kiss the guy!  I was elated!  I should note, that after I returned home, I called the U of M Ortho Surgeon's office, and reported the mis-diagnosis. They asked if I wanted to speak with him. I declined. Later in the week, however, he phoned me at 11:30PM and told me that "he stood by his diagnosis." Unbelievable. I told him that the time of the call, and the message were both extremely inappropriate, and hung up the phone. Because of that doc, I sold my beloved Sunny. I Can't get her back. But I can SWIM!

Sadly, it doesn't end there. I slipped and fell on some ice while walking Bree one evening. I lost consciousness, so Michael drove me to Chelsea's brand new renovated ER. Someone ordered a CAT scan. Two hours later, a young kid...a PA...walked in and suggested a CAT scan. When I told him that one had been done over two hours ago, he seemed dazed and confused...stating that: "Well. I guess I should go read it." He came back later, reporting that I had a concussion and a sprained neck. I asked to see a real doc, and was told he was "busy." There were NO other patients in the ER.  I fell again 3 weeks later, and received yet another concussion, and a worsening of my neck problem. I spent 3 months in rehab for that, and it is still causing me problems.

But. You know what? I am training hard, and I WILL be the oldest person to swim the Mackinac Straits next summer, because I do not give up.