Friday, May 31, 2013

Let the Fun Begin!

     On the last day of school, my granddaughter Madison came home with me. We planned a mini-vacation to Crystal Lake. I packed up my bag and off we went. "Let's pretend we don't know where we are going," said Madison.
     "Okay," I replied, "but I brake for garage sales." We stopped at a garage sale and she found some dangly earrings. Our next stop - Wal-Mart, of course, for snacks, and on the the grocery store for more snacks.  Then, we both wanted to go to the library. She loves to read, just like I do. We found some books, and also checked out some movies, Sleeping Beauty, Harry Potter, and Tom Sawyer. We were both pretty hungry by that time, so we decided to go to Apple Basket for supper. We both chose the hot tenderloin plate, which was delicious.
     Arriving at Crystal Lake, Madison said, "How did you find this place?"
     I answered, "It was my uncle's."
      "Grandma, we have never been here before!"  she reminded me.  Oops, I forgot we were pretending. She loved her room, and unpacked all her clothes right away. Then we did some of our favorite things:

We blew bubbles.
We watched old movies.
We had a "proper tea party" with Oreos and milk.
We painted our nails a ghastly glittery green that she picked out. Then she giggled and told me I looked like I had "ogre toes". She did my hair. The next morning, we ordered biscuits and gravy from Apple Basket . It was everything we hoped for in a mini-vacation, except it did not last long enough. The good news is, now that we have found the place;), we can go there again.

Saturday, May 11, 2013

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!