Mayo Trip Three - Storms and Rainbows

I almost did not go on the third trip with my daughter and son-in-law to Rochester in November. The third one was going to be a simple surgery in the three-step process – the “take down” to get rid of the stoma and bag and fully reconnect her intestines. They were told they would probably only be there three to five days. Vanita thought just she and Stan could handle it…but the closer to the departure date, the more I felt as if I wanted to be with them on this final step.  A friend told us later that Stan told him, “There’s no way we are getting away without her mother.”  J  Of course, he was right. What he may not have known was that Vanita was thinking of him. “What if something happens to me and he is all alone?” she asked me.

          So, on November 17^th we again headed north to Minnesota. The most gorgeous rainbows we ever saw appeared in the skies. “It’s a sign!” Vanita and I exclaimed as she snapped pictures.   

Photo of double rainbow taken by Vanita

 We checked into our hotel and ate dinner at a restaurant called Canadian Honker, recommended to Vanita by one of her students.  The next day we explored the town and ate lunch at our favorite Italian restaurant in Rochester, Victoria’s. I chose the ravioli fungi – so decadent and delicious. Since it was a Monday, Vanita and I both felt a little like we were skipping school.

On November 18^th Vanita had tests done, and we met with her surgeon, Dr. Mathes. She explained the process, and reviewed the dangers of the surgery, as required. I think she could tell we were somewhat alarmed.  “But that’s probably not going to happen to you,” she said, patting Vanita’s arm. “You are young and healthy. We just have to tell you about the risks.”  

          With an afternoon free, we decided to go on a road trip to Wisconsin.  The views were gorgeous, with hills and valleys dotted with farms.  We went to Wabasha, where Grumpier Old Men was filmed.


We could see for miles!

We discovered we were close to Pepin, the birthplace of Laura Ingalls Wilder, so Stan cheerfully drove on. 



Ralph and Mary's with the lake in the background. (Vanita's photo)



 We saw the sparkling blue waters of Pepin Lake and ate at a small bar and grill called Ralph and Mary’s. Ralph told us which direction to go to see the historic landmark. I could barely contain my excitement as we drove on curvy roads through tree-covered hills. I could not believe I was actually going to see where an author whose works I have read many times was born.  There it was, on the right side of the road, a tiny log cabin with a sign in front proclaiming it as the spot where the Little House series began. It was so tiny! One room served as living room and kitchen, another was the bedroom and there was a loft over the bedroom. When I think of the excess that has become what people think of as “necessity”, I could hardly believe a whole family lived in such close quarters. 

Vanita's photo of me in front of a replica of the cabin in which Laura was born.

 The next day, November 20^th, was surgery day. Vanita had to be at the hospital at 8:45. We did not see her again until 5:00 that evening.  The surgery went as expected.  When the doctors made their rounds and checked the incision in her side, Stan and I admired the slim little line that replaced the stoma.  She slept for a little while, but was not able to sleep much that night.

          The following day, the 21^st,, she ate breakfast and lunch, and she felt good, not too sore. At 11:05 p.m.  I wrote in my little book that Vanita experienced nausea and vomiting, and had incision pain. They finally found a nausea medicine that worked at 2:35 a.m. (the 22^nd). She was able to sleep until 6. This was the third day. It was the day they had said we might even be able to go home, but Vanita still was sick and ate very little. She became extremely sick and vomited. They had to put an NG tube in her nose, through her esophagus to her stomach. This tube was attached to a pump.  It was relief at a cost – it was uncomfortable, and she was not able to eat or drink anything while it was in place. When she needed to go to the bathroom, it was a rush to unhook the “suction” machine and wheel her IV bag with her. Stan stayed the night, and I went back to the hotel to rest.
          The next morning was Sunday, and the hotel shuttle did not run. The hospital was only a few miles from the hotel, and I considered walking. “How cold is it today?” I asked the desk clerk.
          “It’s 11,” she replied in her Minnesota accent, “feels like 13, though.” She beamed, as if that was a heat wave. I asked if she could call a cab for me, which she cheerfully did. Arriving at the hospital, I found Vanita was still sick.  
          “They said it would be a piece of cake. Where is our piece of cake?” I asked. 
          Vanita showed her sense of humor by quipping, “They didn’t say we could have our cake and eat it, too!”  I quit writing in my journal on this day. We did not go home on the third day or the fifth day. The days and nights are kind of a blur now.  There were days of blood work, scans and talk of possible blockage and another surgery. I remember standing outside the door to her room, breathing deeply.  The physician’s assistant looked at me curiously as she walked by.
          I said, “I’m putting on my game face.”  She nodded, and I saw the compassion in her eyes.  Following the difficult days were dark nights of sleeplessness, no way for her to find a comfortable spot in the bed, and a particularly stressful night of an extremely rapid heart rate which set off the alarm every few minutes. I lay on the chair which folded out into a “bed” and just watched the heart monitor. It was that night we both thought she might not actually survive, but we did not admit it to each other until long after our return home. 
          On November 27^th, my Facebook status said, “I am still in Rochester, MN with Vanita and Stan. I told Vanita she is on the right track, we just hit some speed bumps along the way. They even told her she "turned the corner" last night. Please pray that she is able to get the stomach tube removed in the morning. It makes her throat so sore.”

Vanita with the nasogastric intubation tube and various monitors.

          These were long, dark days and nights. However, there were a few bright spots, too. One young male nurse confided that he had volunteered in nursing school to have the NG tube put down his nose to his stomach, so he knew what she was going through. He stood by her side with tears in his eyes when they pulled the tube, only to have her get sick in a matter of hours and they had to put it back in. Vanita will always remember his empathy.  Another kindness I will always remember is that the family-owned restaurant, Pannekuekan, near the hospital offered free Thanksgiving dinner to families of Mayo patients who could not go home for the holidays. Stan and I enjoyed ham, mashed potatoes, corn, a corn muffin and pumpkin pie with whipped cream served by a cheerful young man (about 12 years old). It tasted more like home cooking (which we missed terribly). Vanita was a little better, the tube had been removed and she was able to sip on a little chicken broth.   Back home in Missouri, my sister-in-law Cathy gathered my family together at a Mexican restaurant for an impromptu celebration. Of course, we will always be grateful to the many people were praying for us, calling and texting to see how she was.
          Saturday, November 30 – After 13 days in Rochester, 11 of which Vanita spent in the hospital, we were finally able to come home.  Maybe those rainbows we saw on the way up were a sign.  We would pass through a storm, but there would be a positive outcome. Today, Vanita is healthy and as gloriously beautiful as those rainbows.  We are thankful for our blessings.

Vanita and Stan almost eight months after surgery.

Mayo Trip Two

On July 7th, Stanley, Vanita, Lance and I headed north again to Rochester, Minnesota. The time arrived for Vanita's second operation, in which the doctor would construct the j-pouch to act in place of her colon. She was feeling better already following the first surgery which removed the colon and got rid of the ulcerative colitis. The doctors told her this second surgery was the most difficult of the three she would have. However, we were better prepared for this one, and felt more relaxed about the process. We were familiar with the hospital and the town. We stayed at the same hotel and ate at our favorite restaurants. We went a day early so Vanita could enjoy some of the trip. Monday we headed to the Mall of America. I might be the only person who went there and did not spend a dime. I even shared Vanita's lunch, because she is not able to eat very much. The roller coaster in the middle of the mall was impressive, as well as the huge Lego creations. Stan and Lance played a round of miniature golf while Vanita and I shopped. Stan's favorite part of the mall was watching the airplanes land from the parking lot.

Photo by Vanita Weber

Lance bought a pair of cool new shoes. We ate at Victoria's that night. It has the most delicious Italian food. The next day, Vanita had several medical tests. Lance and I went to Barnes and Noble nearby and I bought him the Duck Dynasty book. Although he does not like to read, he finished it in two days!

Notice the shoes Lance bought at the Mall of America. This is the view from the Mayo Clinic.

On the 10th, Vanita had her surgery. It went well, and she actually did not have a much pain as she did after the first surgery. The next day, Stan's parents, Warren and Janie, came up for moral support. While they visited, I was able to explore the town more.
Every week during the summer, they have "Thursdays on First and Third". A section of those streets are closed and filled with food, live bands, and vendors. I bought a delicious Philly cheese-steak sandwich from the owners of Pannekoeken, which is actually a little Dutch restaurant. The weather was beautiful and to walk around seeing a plethora of people from all different cultures was interesting. The experience helped me feel a little bit like what it might feel like to live in a city.

Unfortunately, Vanita was nauseated from the pain meds and did not feel like eating much. The next day Warren and Janie went home, and Lance happily went with them. Sitting in a hospital room is not much fun for anyone, especially an active 17-year-old. The following day, Vanita was released from the hospital, and we came back home to Missouri. The medical staff assured us the next surgery would be a "piece of cake" compared to the first two.

Journey to Mayo Clinic



Mayo Clinic

Stanley, Vanita and I embarked on our journey to Mayo Clinic in Rochester, Minnesota with mixed emotions. We knew the outcome would probably result in surgery to remove Vanita’s colon, but still there was the tiny hope that some miracle drug or diet had been discovered in the premier hospital in the nation for this chronic condition, ulcerative colitis, which my daughter had been diagnosed with fourteen years ago. Mayo Clinic defines the disease as “an inflammatory bowel disease (IBD) that causes long-lasting inflammation in part of your digestive tract.  Like Crohn's disease, another common IBD, ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications.”  She was getting close to the point of “life-threatening complications,” and something had to be done.

 The past year had been the worst; a hospitalization last May, monthly IV treatments of a drug with possible future bad side effects, steroids that made her feel irritable and could damage her bones, and a handful of pills each day. She tried everything the doctor told her to do, including avoiding various foods, but nothing was working. Vanita’s health and quality of life was diminishing. Her doctor told her it was time to consult with a surgeon.  The surgeon informed her that while he felt comfortable doing the surgery, he only did about two per year and would be glad to refer her to Mayo Clinic if she wanted to go there. After some serious thought and discussion, we all agreed Mayo was the place to go, and I wanted to go with her. Fortunately, my son-in-law did not mind that I 
tagged along for the ride.  

The Top of Iowa Welcome Center and Rest Area

On a warm Sunday morning, April 7, we headed north.  We discovered all the best and a few of the not so great bathrooms along the highway. The most interesting one was almost in the upper edge of Iowa on Highway 35. It is called The Top of Iowa Welcome Center and Rest Area and resembles a big red barn with a silo. A nice man who worked there gave me a Minnesota map and drew the route to Mayo in Rochester.

We arrived at the Econo Lodge in Rochester. Our rooms were clean and comfortable. We ate supper at the Whiskey Creek Wood Fire Grill, a western-style restaurant close to our hotel.  Since she had an early appointment at 7:45, we turned in early.

Stan dropped us off at the door of the Goda Building in the Mayo Clinic. These amazing glass sculptures dangled  from the ceiling, and Vanita said, “That looks like Chihuly,” and of course, the thirteen blue, green and gold huge works of twisted interwoven glass art that made up a glowing chandelier were designed by famed glassblower Dale Chihuly.  Pictures do not capture the enormity and beauty of the project. Mayo incorporates art and music into medical treatment.  My artist/art teacher Vanita appreciated the many works of art as we walked the halls from appointments to medical tests, and recognized the artist before we were close enough to read the names: Miro, Warhol, and a huge statue by Rodin.

Chihuly's Glass Sculptures

But we were there for answers not just the art show, so we pressed on to see Dr. Faubion, a doctor with movie star looks who came highly recommended for his expertise in the field.  His assistant reviewed Vanita’s medical history, and the progression of her disease. We all became emotional as she described a typical day of pain, urgency, running to the bathroom day and night (at least 12 times a day), passing blood on a daily basis, feeling so drained that she just drug herself to work and back home to crash on the couch.

Dr. Faubion reviewed the assistant’s information and reaffirmed what her Columbia doctor said. There were no miracle cures at this time, and probably not in the near future. He said they needed to ascertain for sure that it was not Chrohn’s disease, which could not be cured by removing the colon, and scheduled a battery of tests for that day.  Dr. Faubion put it well when he said that this would be a “surgical cure” for her disease. I held onto those words and repeated them to myself as well as any of the family to whom I talked that day.  “Do you want us to schedule a surgery if the tests are negative for Chrohn’s?” the assistant asked. We all nodded.

As we waited in between tests, Vanita and I walked down the hall. She became short of breath easily, and we had to stop and rest occasionally.  In the hallway, a group of people gathered around a gleaming black grand piano and sang songs from The Sound of Music. People of all ages, sick and healthy, some in wheel chairs sang, raising joyful music to the high ceilings. Then they sang an inspirational song that I remember was performed at my sister Janie's high school graduation. We were so moved by the music.

We could not help but notice two precious little girls with their mothers; one wore a little pink hat and the other a pretty headband with a bright flower.  Their lack of hair only accentuated their sweet round faces. Vanita became a little emotional and said, “You know, sometimes I think it is harder on the mother than the child who is sick. I remember when Lance was in the hospital….”  I just pressed my lips firmly together, partly to stop their trembling, but also because I agreed.  I was the mother in this situation, and it was not easy to watch my little girl go through this. The tests were completed and Vanita had a consult appointment with a surgeon the next day at 3:30. We did not know the results of the tests yet.

The next morning, Logan, who was working four hours away in South Dakota, said he was coming to be with his mama! It was already freezing rain where he was, and it turned out they had a blizzard in the next few days while he was with us.  Vanita was feeling better this morning. She received a phone call that she had a meeting with a “stoma nurse” at 1:30. While we had not been told she was having surgery for sure, that appointment was the first clue that she was.  Logan arrived at 1:00; we were in the vehicle ready to go, he jumped in, and we made her appointment right on time. The nurse asked, “You are having surgery tomorrow?”   We kind of laughed nervously and said we had not met with the surgeon yet. The nurse explained all about the equipment Vanita would be using for the next six months after the ileostomy procedure. I was impressed by my daughter’s strength, as she went through the step-by-step procedure. She had already researched the procedure a great deal and was prepared for the outcome.

We met with the surgeon, Dr. Boostrum, a confident young woman who explained they felt it would be best to do the procedure in three steps. Step one would be to remove the colon and fashion the stoma. If you are like me and do not know what that is, they actually bring the end of the small intestine up through an opening in the side and sew it to the stomach, making a “bud” through which waste is emitted into a bag.  Step two would follow three months later and fashion a j-pouch to take the place of her colon, and the final step is the “take down” to reconnect everything and get rid of the external bag.  The first surgery would be performed the next day at the Rochester Methodist Hospital, which is part of the Mayo Clinic.

Logan did his best to keep us laughing!

Logan took us out to Outback for supper. Vanita had no restrictions on what she could eat, although she had not been able to eat more than a few bites of food at a time for several weeks. We ordered the Bloomin’ Onion, and she and I shared a meal of shrimp and steak.  Having Logan there helped all of our moods, because we enjoyed visiting with him. He tried lobster for the first time, and graciously shared it with us.  Neither Vanita nor I slept much at all that night. We were not worried, because we were both confident it was the right thing to do, but we just could not relax enough to sleep.

Check in time for surgery was at 8:45. Logan and I kissed her and went to the waiting room, while Stan was able to stay with her a little longer. They took her back to prepare for surgery at 10, but the surgery did not begin until 1:00, and they finished at 4:30. She was in recovery from 5 o’clock until 7. Finally, we were able to see her. They had done a spinal in addition to the other anesthesia, so she was not in much pain at that time. She was just very tired. Stanley said he would stay, and Logan and I returned to the hotel. I slept well that night, relieved that the surgery was over.

Amazingly, the day after the surgery, Vanita ate breakfast. Logan and I explored the underground shops and the skywalks connecting Mayo to shops and hotels in the area. The locals explained that the winters are so bad that it is better to be inside.

The spinal wore off, and Vanita was in severe pain in the evening.  Since the surgeon had warned us about the intestines wrapping around the stoma area after laparoscopic surgery, we were concerned she might be headed back into surgery. The thought made me light-headed, and I sat down. I remember Vanita saying, “Are you going to pass out?”  Logan fanned me until the color came back to my face. I was embarrassed, because my job was to be strong for her! A doctor on call came and looked at her and calmed our fears.  The pain meds just did not keep the pain down, even though they tried different combinations. I spent the night at the hospital to let Stan rest.

Happy the surgery is over.

The next morning the pain was better, but she was nauseated.  Dr. Boostrum and her entourage of about six people came to check on Vanita. They said things like, “What a beautiful stoma!” and “It is already working!” Vanita quipped that everyone else at the hospital was much happier with the evidence it was working than she was. As they were all admiring the doctor’s work, Vanita became emotional and admitted it was a lot to take in.  Later, after another visit from the stoma nurse, I told Vanita that they needed an advocate who had actually been through the experience to talk to her. That afternoon, what Oprah would call a “God Moment” occurred. One of Dr. Boostrum’s assistants, a young, attractive blonde woman, came back to Vanita’s room. She sat on the bed and said, “I just want you to know that everything you are going through now is worth it, and it will be alright. I know this because I had the same procedure 12 years ago when I was 13 years old.” She confided that she felt moved to come in and talk to Vanita after seeing she was so upset. Her message was what we all needed to hear.

On Saturday, we were both hopeful and a little apprehensive about going home. The doctor visited and said she could go. We packed up and wheeled her outside in the cold morning air, anxious to go home. Logan said his goodbyes and headed back to South Dakota.  On the way home, Vanita said, “I feel like I’ve had my guts ripped out……Oh, yeah, I have!”  Stan and I laughed, happy to be able to make light of a serious operation. We left snowy Minnesota and returned to the green, green grass of Missouri.

Vanita was touched by the generous acts of kindness by family, friends, co-workers and the Atlanta church community, which included prayers, cards, flowers, food, phone calls and text messages. While first week and a half was the toughest physically, just two weeks later she was able to attend Lance’s Prom Grand March.  She looked healthy and beautiful!

Before Surgery

After Surgery - And she wondered why people kept telling her how good she looks!