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Eleven Years, Eleven Miles – A story of hope and courage

Posted Jul 07 2012 7:56pm

Jeri just after walking onto the beach on the other side of Tahoe

She always had the most beautiful smile. She used it all the time. I never saw her without it. The adjective ‘kind’ described her. She had a calming spirit. She became my friend in seventh grade. I didn’t know what God would require of her then, but I would later learn. And how much.

Years separated us, but time brought us back together. And faith. And illness.

In Spring of 2011, Parkinson’s disease patients and family and friends joined together in a campaign. 30 miles in 30 days. Friends and family of PD patients joined together in walking one mile a day for thirty days. The reason: to bring awareness to Parkinson’s disease.

I sent out a blurb to friends and family, asking for involvement. It would cost nothing. Nothing but time. And commitment. I had 32 people join my team. Three people kept in daily contact or regularly – two to three times a week. They sent in pictures of things they saw on their walks so that I could post them with their updates. Now, you have to understand… these three people all live within ten miles of my hometown which is ten miles from the Santa Cruz Boardwalk. I received pictures of beautiful sunsets, the swimming facilities at UC Santa Cruz, ongoing murals being painted in downtown Santa Cruz, gorgeous sea glass, beach scenes, fawns, spring blossoms and more. Perhaps this is part of what kept them going – the surroundings. You can hardly beat the scenery and the diversity.

I also need to tell you that I had not seen these three people for over 15 years – since before we moved from that area to north Idaho. So, imagine my surprise to their response to this ‘plea’ to help making others aware of Parkinson’s disease. Three old friends who don’t know each other but who I reconnected with through Facebook and who now all have something in common.

But this isn’t about the campaign or Facebook or friendships. This is about integrity. And perseverance. Determination. Illness and faith and how people who have a drive that won’t quit – survive.

Jeri sent me a note on March 26th regarding the 30 Miles in 30 Days campaign. It read – “I would love to do this! Thought about putting a spin on it and swimming a mile instead… I hope awareness is raised and it goes well!!!”

So she did. She swam. And she swam and she swam and she swam. And then she had an idea…

Jeri is an old school friend. I met her in seventh grade. She was one of the most tenderhearted people I knew and as I said, she had the most (and still does) winsome smiles. Nothing ever seemed to shake her.

And then we lost touch.

She got married. I got married. She had children. I had children. She got a dog. I got a dog. And then, this past year, we reconnected and she signed up to do aid in the effort to raise awareness for Parkinson’s disease. Only, as she put it, with a spin on it. She would swim 30 miles in 30 days instead of walk.

Jeri did swim. However, I didn’t realize that in the back of her mind, she was toying with an idea all her own. A much bigger goal.

Eleven years ago, Jeri was diagnosed with cancer. Non-Hodgkins Lymphoma. This is Jeri’s story.

Jeri was having problems with her right eye. It affected her reading. It seemed to be protruding. After multiple diagnosis possibilities, her doctor called it Graves disease, an autoimmune disease where the thyroid is overactive, producing an excessive amount of thyroid hormones. Her doctor wanted to start her on radiation and it was at this point she says, “I saw God first.”

“The radiologist was an interim radiologist at Dominican. She did not feel comfortable doing radiation for something not confirmed. I was sent to Stanford to a Thyroid Specialist. After a half an hour, this large, kind Sottish Doctor told me why I did not have Graves nor a thyroid disorder. He sent me to an eye disease specialist. I had had a biopsy with my eye doctor in Santa Cruz, done in January on the tumor but it was inconclusive. The new specialist said he would not stop until he had something. He thought he might have to break my jaw and go through there, but was able to go through my eyelid. Another answer to prayer. He found a section that made it clear. Non-Hodgkins Lymphoma.

“How did I feel? Relieved that it was finally something I could fight. To watch my eye protrude and not know how to stop it or why it was doing so was worse than hearing cancer. The kind Scottish, thyroid specialist called me with the news. He had such a gentle delivery I considered it another gift from God.”

However, Jeri adds the comment that she thinks having a disease is harder on the caregivers. She and her family were ready for previously planned ski trip and had the car packed when she received the news of her diagnosis. Instead of taking a trip to frolic in snow, she took a short walk to the phone and started calling family. She says, “To just watch someone and guess at how they are feeling is harder. I knew how I felt.”

After her correct diagnosis, Jeri was sent to Dr. Sarah Donaldson, a radiologist at Stanford, and as far as Jeri was concerned – another gift sent from God.

They had a mask made for her head which was tacked to the table for each session and each session was daily for six weeks. This was to work on a tumor in her eye socket behind her eye. According to Jeri, Sarah was amazing and is known for her ability especially in sensitive areas.

“The tumor responded very well,” Jeri said. “They were able to shrink it and my vision was restored. Lymphoma is a blood disease however, and travels in the blood stream. This means it is not localized. I had six month check ups to watch. I would have an MRI, CT and blood work done. I began seeing an oncologist in Santa Cruz, Dr. Michael Alexander. After multiple trips to Stanford, it was nice to have some of the tests done locally. Two years later, I realized I was noticing things again. It was confirmed that it had gone bilateral and was now in my left orbit. I was sent back to Stanford and did another six weeks of radiation. I stopped teaching at this point as it was hard on my students to take these breaks. They needed more consistency. After this round of radiation, I went back to the tests every six months. Two years later, spots showed up in my abdomen. There were three. This time, because I had already done radiation several times, and the tumors were small, it was decided that we would ‘watch and wait’. This means that until anything grew big enough to affect an organ or hurt in some way, we would not use the big gun of chemo. ‘You save your ammunition’ was how it was presented. Lymphomas can wax and wane and you really are watching and waiting.”

Jeri is now on what is called, ‘Watch and Wait’. Because she has had so much radiation, she now goes “every other year for the MRI and CT with blood work every year. The tests themselves can play a physical part and do damage. The tumors have not grown.”

Jeri has been married almost 30 years. She and her husband, Doak, have three daughters ages 27 and twins who are 25 and make their home in her childhood town in the Santa Cruz mountains in California.

Jeri’s oldest daughter, Jessica, is married and lives in Maryland. Her husband is in the military and is stationed in Fort Detrick.

Jenise, one of the twins, is in HR at local strawberry grower and is engaged to be married and currently lives near Santa Cruz, CA. Alyssa, the other twin, bought an art studio in town and lives at home with her dog Sophie.

“When the girls were little,” Jeri says, “a cousin, Erin, came to live with us. Her parents had both passed away. Erin is now married and lives in Anchorage and has one little boy. He is not really a grandchild, and yet he is a grandchild.

“I taught piano for a while. When I had to go through a second round of radiation, I stopped teaching.”

When Jeri was about to turn 40, she was coming out of her first round of radiation. By now, her girls were in fourth grade and she had kept busy as a mother of now – four girls. She had never done anything for herself as far as exercise goes and took up lap-swimming with a friend. She built up her stamina to where she could swim for half an hour and at that time, someone suggested she try Masters swimming.

Jeri had always considered Masters (competitive swimming for adults 25+) elite, competitive collegiate swimmers. In high school, Jeri didn’t participate in sports. Not only was there not much for girls back then, but Jeri and was bussed over 11 miles plus, to and from school each day, which made it nearly impossible to stay for any activities if you didn’t have other options for transportation. She went with a friend swimming and found the workout to be just what she needed.

Her coach was gentle and encouraging and coached a group of all abilities.

“I started in the slow lane and worked my way up,” Jeri said. “I could not do butterfly (I still can’t). A friend from church who swam as well, said she could not do open water as she was afraid of sinking to the bottom and not being found. It was something she wanted to overcome and I told her I would swim and breathe to her side keeping a close eye on her.”

And – so they did. Jeri realized her love for A to B swims and not having the restrictions of the lane lines. With this newfound preference for ‘open waters, Jeri went on to swim several Masters Open Water events such as swimming around the Santa Cruz Wharf, a one mile swim. She has also done another ocean swim in Santa Cruz, with a two-mile radius.

Jeri went on. “The farthest I swam was Donner Lake, which was 2.7. I loved swimming Alcatraz (growing up we were taught you could not do this!) and that led to swims under the Golden Gate. I learned that I did not feel the cold as some did. English Channel rules are swim suit only. I have been swimming 11 years now.”

So – how did Jeri get from the one mile swim around the wharf in Santa Cruz, to a 6.2 miles swim across Lake Tahoe?

When Jeri turned 50, she wanted to set a bigger goal. When she was first diagnosed, like so many others who are diagnosed with any sort of illness, she felt as if she was fighting an enemy within. She says, “You hear fighting words, like battle, war and attack [regarding] cancer but you are fighting something within [yourself]. I did not like the idea of being mad at my body.” Swimming enabled her to tell herself “I could do that…,” which implied, “I can’t be that sick if I can do that”.

The Masters swim team used to have a swim from the Capitola Wharf to the Santa Cruz Wharf and sported a 6.2 mile distance. This is what she wanted to do.

Talking to her coach, she learned that this swim – from wharf to wharf – had not been done in years. She told him about her goal – wanting to do something bigger so that she had something higher to aim for and her coach suggested Lake Tahoe.

Jeri had only known people who had relayed across. “Trans Tahoe is a relay in July that the Olympic Club puts on. With six required members on each team, it is only two thirty minute swims. I did not believe him when he thought I could do the 11 miles. But I did trust him that he knew something. He had taken three successfully across the English Channel. He uses the Tahoe swim as practice for that. I first talked to him when I was 50 but had had a fibroid tumor and had a hysterectomy. That year [last year - 2010] was out.”

It took Jeri a year to regain her arm strength. She had not swam much at all, including the end of her recovery year (2010). When Jeri received my challenge to walk 30 miles in 30 days, she was at a point where she needed a goal to get back into a regular swimming routine. When she met with her coach at the end of April of this year, he told her five months to get in shape. She was shocked at the short amount of time before her coach felt she would be ready.

“I could not have even thought of [Tahoe] had I not been doing the mile swim {30 miles in 30 days} each day,” Jeri said.

Jeri considers this a learning experience and says the word ‘perspective’ comes to mind.

“I used to think ‘Just get through the…’ and ‘Just get through the warm up. Then just get through the practice.’

“Coach wrote up a schedule that had a lot of distance on it. It built and built. I was overwhelmed in looking at the numbers, but understood it was necessary to get across. We had to adjust several times.”

In June, there is a big swim that begins the open water season. Jeri was going to swim the one mile and two mile at Berryessa (largest lake in Napa County, California). This was the first year in thirty that it was canceled by the Coast Guard, calling it unsafe due to intense rain. Because of the distance/time it took to get there, Jeri missed two days of training. Then she was scheduled to swim in an open water long course swim meet at UCSC (University of California in Santa Cruz).

“This was going to be the scariest as I had never swam a pool meet. I was not feeling well and had gone to the Walk In Clinic. The doctor did some scans and said it was pneumonia. This meant bed rest for two weeks. I thought the Tahoe dream was over. The meet was definitely over. After two weeks, I met with coach and was proud of myself that I did not cry. He just said we would adjust.”

Jeri’s ‘adjustment’ began by starting to train again and she and her coach set a new target date for September 17th. By then, “the weather begins turning and daylight is shorter. The lake can be colder.”

Jeri doubled her practices by going for an hour and a half in the morning and then almost two hours at noon.

“Again – perspective,” Jeri goes on to say. “I was shocked I could do this. I was also shocked at how hungry I was. In August, I was set to swim again at Donner Lake. It is 2.7 miles. Coach suggested last minute that I swim a return trip going around the other side of the length [of the lake] (during the race, boats are limited on the lake). This would be almost six miles. It was the first time that I had a feeding as well. Coach went in a kayak on the return trip and had a hot tea mix. I remember looking back and thinking ‘Okay… that was six, but could I really add almost six to that?’ Again, perspective. Until then, I thought 2.7 was far!”

Her teammates wasted no time in encouraging her in her goal as soon as word got out of her plans. She was overwhelmed by the reaction. She soon discovered people she didn’t even know talking to her about it, which left her soaring through the rest of her day.

Jeri kept a journal and in it recorded the realization of how powerful encouragement is and can be. She felt accountable in some way for all she had experienced so far and people were coming up to her, telling her they had begun swimming vicariously.

“I am so thankful to God that I have each day. I really wanted to do this [Lake Tahoe] to celebrate that gift. My best friend growing up, Stephanie lost her dad to Lymphoma right after I was diagnosed. It had been ten years for him.”

When asked what the most difficult thing for you through your training was and if she ever wanted to quit, she talked about a teammate who she considers faster and one of the more elite swimmers. Her teammate had decided that she was going to attempt Tahoe as well.

“She trained with me for a while. She did the Trans Tahoe Relay just to check on the cold aspect. That was her biggest fear. I have more insulation and my fear was for the distance. She attempted her swim in August. We got word at practice that she had to get pulled out. She was four hours into it. [That] was discouraging.”

Starting this venture, this goal, this target called ‘Lake Tahoe’, Jeri took it seriously, one hundred percent.

“My diet was fuel based. In the evenings prior, we would have a glass of wine with dinner. I gave up all alcohol. This is silly, but in the beginning, it was hard to not sit down with a glass of red and relax with Doak. It was also hard to watch him relax with a glass of red while I was not. Silly. Totally my choice. All vented in the journal.”

And then came the morning of September 17th, 2011. It was a beautiful, clear but dark, fall morning. 4:30 a.m., to be exact. Jeri and crew prepare for the day. Donned with a blue swimsuit, her goggles and a swim cap at 6:30 a.m., she takes nine steps into the water and then dives into Lake Tahoe, the guide boat sitting off shore committed to her side until she steps onto the other side.

Windy and cold the night before, Jeri asks for prayer that dawn will bring sunshine and a windless day. Jeri’s prayer is answered.

Once into the calm waters of the lake, arm over head, stroke after stroke, moment by moment Jeri swam, stopping only for a refuel of a protein tea-mix drink. Then, six hours, three minutes, and one second later, Jeri resurfaced onto Skylandia Beach of Lake Tahoe.

Eleven years of having lymphoma. Eleven miles to celebrate.

How do you celebrate a disease? Why would you want to do an absurd thing such as that?

From my own experience, I would say you celebrate your disease because it has changed your perspective. Life isn’t all about you anymore – it never was. But now – it has become making others more important. It is stopping to see one thing and seeing another. And another. It is about having your eyes reopened to the things you didn’t know you could no longer see. It is listening to others instead of wanting others to listen to you. It is giving without expecting. It is loving the unloveable.

Celebrating a disease is celebrating life. Giving thanks for the ugly so that you are able to experience the beautiful. Just like Jeri. For eleven years. Eleven beautiful years.

Journeying with you -
Sherri

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