Fisherman Angles For Cure With Dr. Sugarbaker
Until last May, Mike Miller and his wife Terri lived a full and happy life together, a busy jumble of city and country, work and play, family and friends, home life and the outdoors. They live in a log house on the waterfront of a 300 acre lake. Their free time was spent fishing, swimming, skiing, and boating. Although stocked with plenty of bass, catfish, and crappie, they fished for their dinner favorite, blue gill. Nothing kept them off the lake; during the bitterly cold winters, the Millers laced up their skates and set off across the ice to visit friends.
A new grandbaby kept them on their toes inside the house. Terri had taught piano before returning to a position as a third grade teacher. Mike is an excellent pianist, studying at Indiana University in his youth. He even kept a baby grand piano behind the receptionist's desk at the family cabinetmaking business he helped run in Indianapolis. Business was good. Sometimes when things got crazy at work, Mike's piano playing would fill the office with music. It was that kind of place to work, a place where people worked and felt good.
In May of 2002, when Mike was diagnosed, the fabric of the Millers' lives, interwoven with that of so many others, began to unravel.
NAVAL SERVICE LEADS TO LOVE AT FIRST SIGHT, FAMILY BUSINESS
Mike and Terri are both from Indiana and met on a blind date while he was at Indiana University. Mike enlisted in the Navy in 1966. After boot camp, Mike's superiors narrowed down his possible assignments to two -- radio operator or sonar man. The hours of practice at the piano enabled him to type over 100 words a minute, excellent skills for a radio operator. His well-trained hearing made him a prime candidate for listening to sonar. While his fingers and ears were above average, his eyesight was not. Because he wore glasses, the Navy felt it too risky to put him aboard a submarine. He was given duty aboard the USS Niagara Falls and earned the rank of radioman, 2nd class.
Whenever he was given leave of duty, Mike returned to Indiana. On one of his leaves, he called Terri. They had two more dates. The fourth date took place at the altar in August of 1967. It was on his wedding day that Mike met his in-laws, Mr. and Mrs. William R. Maish. Mrs. Maish was also a highly trained pianist. After spending time together, it was obvious that Mike and Mr. Maish had a lot in common, including music: Mr. Maish was a guitar player. Over the years, they also would spend hours fishing, throwing horseshoes or just enjoying the outdoors. Terri remembers thinking it was scary how much they were alike.
Mike was honorably discharged from the Navy in 1970. He returned to Indianapolis and went to work for his father-in-law's cabinetmaking business, the William R. Maish Company, before attending Valparaiso Technical Institute in Valparaiso, Indiana. After that he sold pianos and organs in Indianapolis.
It was not long before his father-in-law convinced him to come back to work with him. Mike was family, and the family should be together. Since 1979, Mike has worked at the William R. Maish Company. When the company's patriarch, William R. Maish, passed away in 1998, Mike Miller continued as President and a part owner with his wife Terri and brother-in-law, Bill Maish. The small company has an excellent reputation for quality work. It is family-run and family-operated, with family fun.
PLEURAL EFFUSIONS EBB AND FLOW, IMAGING TESTS, THORACOSCOPY AND DIAGNOSIS BY DR. SUGARBAKER
In May of 2000, Mike began to feel discomfort in his right side. He met with doctors at St. Vincent's Hospital in Indianapolis, Indiana. Several chest films were taken which revealed a pleural effusion. A thoracentesis was performed and the fluid tested negative for a malignant process. The doctors then performed a thoracoscopy with biopsy. Tests performed on the biopsied tissue also were negative for malignancy. Mike was given a clean bill of health and sent home.
For the next year and a half, Mike felt great. But in the latter half of 2001, he again began to feel pain and discomfort in the right side. At first he felt it was due to his table tennis league play. When the pain became unbearable, he returned to the same doctor who had performed the thoracentesis in 2000. The doctor suspected that the fluid had returned. A chest film was taken which revealed an abnormal white "spot." The following day a CT scan was taken. Mike's doctor told him that there was "something unusual going on" in his chest.
Mike was referred to a surgeon who examined the medical records and said that the spot could be one of three things: a benign tumor; mesothelioma; or adenocarcinoma. To determine the diagnosis, Mike underwent a CT-guided needle biopsy. He and Terri were told that the results showed a "mild indication of inflamed mesothelioma cells."
The Millers immediately went on the Internet to learn all they could about mesothelioma and the treatments available. They read about Dr. David Sugarbaker at Brigham and Women's Hospital in Boston. They subsequently contacted his office. After undergoing a MRI and echocardiogram as requested by Dr. Sugarbaker's office, Mike and Teresa traveled to Boston and met with Dr. Sugarbaker on May 3, 2002.
After reviewing the medical records, Dr. Sugarbaker did not feel the tissue samples available were enough to render a definitive diagnosis. On Thursday, May 9, Mike underwent a thoracoscopy at Brigham & Women's. Ample tissue and tumor were harvested and submitted to pathology for testing. Immunohistochemical staining tests conducted upon the biopsied tissue left no doubt that the proper diagnosis was malignant mesothelioma, epithelial type.
TOUCHED BY GOD'S GRACE AT BRIGHAM & WOMAN'S
Mike and Terri returned home to Indiana firm in the conviction that they had the right treatment plan and the right doctor. On May 30, Brigham and Women's notified them that Mike was scheduled for an extra-pleural pneumonectomy (EPP) with an intracavitary chemotherapy wash on June 27, 2002. Mike and Terri left Indiana on June 22 and drove the approximately 1000 miles to Boston over the next two days.
On June 27, Dr. Sugarbaker performed the EPP. The surgery began at 7:30 in the morning and lasted a grueling eight hours. Dr. Sugarbaker removed Mike's right lung, pericardial sac and a portion of his diaphragm, replacing the last two with Gore-Tex patches. He then washed out the thoracic cavity with a heated chemotherapy mixture
After surgery, Mike remained in the intensive care unit, hooked up to a thicket of intravenous lines, circulation tubes for his legs, lines running to various monitors, and an epidural running into his neck. A tube plunging into his chest alleviated pressure caused by excess fluid and air rushing to fill surgically created spaces within the pleural cavity.
By July 2, in an effort to limit the amount of fluid that could potentially build up, Mike's fluid intake was controlled with a hard diet of cream of mushroom soup, cream of wheat and custard. He was allowed only ice chips, rationed by the hour. His renal doctors were concerned that his kidneys might fail, but his attending thoracic physicians argued that his fluid levels must remain low, at least temporarily.
Two pints of blood were infused daily, and Mike's physicians constantly monitored his kidneys. He began walking while still in the hospital, but constipation compounded his other problems. On July 10, Mike's heart responded negatively to his blood pressure medication, and his heartbeat soared to 150 beats per minute. His heart rate was soon brought back to normal, but even by the next day, he was not out of the woods, with an oxygen supply always handy and albuterol lung treatment continuing.
Mike describes the staff at Brigham & Women's as "just the greatest group of doctors and nurses you could want." He says, "I put myself in God's hands and it seems that He reached down and touched everyone who was caring for me. At no time was I ever worried about my life being in jeopardy. I have no regrets about my decision."
Mike was finally released from the hospital on July 16, but he was required to remain in Boston should any problems suddenly flare up. His ankles were swollen, and he was experiencing severe difficulty walking. On July 22, Mike went into arrhythmia. He received treatment at Brigham and Women's and was released. He and Terri began the drive home to Indiana on July 30.
ON THE ROAD TO RECOVERY AND CLEAR, DEEP WATERS
One of the changes Mike noticed after the surgery and chemotherapy was how his taste buds had changed. Foods that Mike remembered liking no longer tasted good. He had lost 20 pounds since arriving in Boston. Mike and Terri did not return home until August 2. They had been gone for 41 days.
Back home, Mike continued to battle against his lack of appetite and nausea: "I really need to whip these two things and then I'll be all right. But I have no interest in food. " Even drinking water was a challenge.
Mike managed his pain with MSContin and Percocet, but he developed a deep, itchy rash that covered his upper torso. Over-the-counter lotions and ointments provided only temporary relief. The rash then moved to his legs. He tried eliminating his pain medication, thinking that might relieve the interminable itching. After two days, the pain was more than he could stand and he went back to the pain pills.
Mike understood that he needed to build his stamina. It took a few weeks before Mike could muster the strength and endurance to make the walk down the forty-two steps to his boat dock. By August 26, he was making the trip at least twice a day. He then devised his own rehabilitation program that also included walking the length of his driveway, down to the end of his street and back, a distance of 100 yards each way. He walks the loop four times, twice a day.
Mike took advantage of the extra time at home to play the piano more. One of his goals during his recovery was to improve his sight-reading. Mike had always preferred playing from memory, feeling the music filter through his mind, soul and fingers. He had returned to work on August 5. Nothing was going to keep him down.
It does not take much movement for Mike to be reminded that he underwent major surgery. Any quick, sudden movement still generates a wince of pain.
Mike has begun receiving chemotherapy drips once a week, under the care of a local oncologist. A treatment cycle takes place over four weeks. The first treatment of a cycle consists of a combination of Cisplatin and Gemcitabine. The next two treatments consist of just Gemcitabine. The fourth week of a treatment cycle, Mike receives no chemotherapy. He will undergo six cycles.
The day after the first two treatments, Mike was noticeably nauseous and exhausted. He remembers, "My energy level was zero, I was completely wiped out." He also has no appetite. After his latest treatment of chemotherapy, he noticed the side effects were not as extreme, and hopes this improves over the coming months.
None of the bumps in his recovery have kept him from making fishing reservations for next July in Ontario, Canada. Four generations of his family have made the trip each year to enjoy the serenity of fishing the clear, deep Channel Lakes. Mike says, "My family has been going there every year for the past 30 years. I don't see any reason to stop the tradition."
Keep the line tight Mike, feel the bump and set the hook. You have many more fishing days ahead.
*** POSTED OCTOBER 17, 2002 ***
An Update -- 6/17/03
Dear All,
Wanted to bring you up-to-date on our latest happenings.
Mike made some quick phone calls and his Minnesota fishing trip was back on. He returned yesterday after a wonderful week during which he learned many things. He can travel by car long distances and he can fish in the morning, have lunch and a rest, and return to fish some more. He feels confident that he can enjoy the Canada trip next month and is looking forward to being with the father-son teams.
While he is gone to Canada my friend Diane (Di) and I are heading south to Sanibel Island. We'll pass through Orlando and hope to see our friend Pam. Are anxious to enjoy the shelling beaches and great food of the island.
Love, Terri
An Update -- 10/15/03
Dear All,
Wanted to let you know the latest on Mike's health. He had a CT scan the first week of October. When the docs saw something, they scheduled a PET-CT scan for last Friday. It appears there are several masses in the lower chest cavity near the kidney. One is positively "hot" and the plan is to biopsy it to confirm a reoccurrence of meso. The docs are sharing these scans with Dr. Sugarbaker in Boston. At this point we don't have a firm plan but are working on it. The radiation oncologist here, currently Dr. Timmerman, verified with Mike that he did want to fight this tumor. He received a firm and definite "yes we do". So once more, again into the fray.
Please keep us in your thoughts as before. Your support is vital to us in this struggle.
Much love, Terri
An Update - 1/22/04
Encouraging news from the Millers-hurray! Saw the oncologist yesterday. Mike starts Alimta, a Lilly drug made especially for meso, next week. It's still in trials so will be free in the beginning. Should be approved by mid-February and then watch the cost soar. The sessions are every three weeks and only last about 15 minutes. Most people have had no adverse effects-let's hope Mike is that lucky. He also receives B-12 shots every nine weeks and CT scans after two or three sessions to monitor tumor reduction. We both felt very positive after our meeting and are anticipating good results.
Nevertheless, please keep Mike in your thoughts and prayers. All aid gratefully accepted is our motto.
Love, Terri
An Update - 01/21/04
Dear All,
Mike had his first Alimta infusion Thursday morning. They gave him saline, then an anti-nausea drip, followed by the Alimta which only took fifteen minutes. He has experienced no nausea or itching so may be fortunate to escape negative side effects.
After two Alimta treatments they'll do a CT scan to determine progress in shrinking tumors-keep your fingers crossed. He can have as many treatments as necessary-there is no toxicity problem.
Terri
An Update - 3/11/04
Dear All,
Mike had his third Alimta infusion yesterday along with a B-12 shot and a procrit shot. It seems that a big part of his excessive fatigue has been low blood counts. Today he received two units of blood and went from a sunken grayish-yellow face to very pink and plump! What a difference.
The biggest news was that the radiologist reports the chest wall tumor has shrunk from the previous CT scan in December. We can feel and see that the tumor on his arm has diminished so the chemo must be having the desired effect. We plan to continue this treatment. After two Alimta infusions they do another CT scan to measure, hopefully, further shrinkage.
So, thank you once again for all your good wishes and prayers. I am more hopeful now than since this all began over two years ago. Our goal then was to buy time for Mike to be here when something was discovered that would curtail this cancer. Maybe we've succeeded in that goal and Alimta is the miracle that penicillin was so many years ago.
Much love to all,
Terri
An Update - 4/16/04
Terri's computer is temporarily down and thus I have been contracted once again to provide you with an update on our buddy, Mike. Currently he is in University Hospital. They had a dr's appointment yesterday and decided to keep Mike for a few days. He was dehydrated, anemic, generally rundown, has pneumonia, and needed his medications adjusted. Overall, he felt terrible and looked terrible. He has since been re-hydrated, had two units of blood, and had his medications adjusted. The report today is that he is making progress and feeling much, much better. The plan is to do more tests as the doctors are still trying to figure out what the current problem is, other than the obvious, so he will most likely remain in the hospital until about Monday.
Steven is home until Sunday and Lynn has been with them. They were all with Mike yesterday and felt much relieved when he was admitted and doing better today. Terri has been worried, but reports she is much better today as well.
Once again, your prayers and thoughts are certainly welcome as our Miller friends struggle on through this long battle. May our combined strength be with them all.
Hope this finds you all well and as always, thanks for your continued support. Diane
An Update - 12/10//04
From Terri
In May 2004 surgeons found a massive infection in the missing right lung cavity. They removed it along with more ribs and tissue. Since then he has had an open wound which is changed daily. First by the visiting nurses and then Terri learned to do this task. The nurse comes weekly to monitor shrinkage. From a "sharkbite" size opening to about a three by five the opening has definitely shrunk. Still requires 36 feet of gauze to absorb drainage. Tumors returned in his right arm so he began Alimta again before Thanksgiving. Had the second treatment Dec. 7th and already notice some positive differences in the tumor.
Great thanks to the people at Roger Worthington and Waters & Krause for relieving us of financial worries. We appreciate our good fortune that led us to them and their good advice.
As ever,
Terri
Mike and Terri as they watch their grandsons play, summer of 2004. The boys are three and a half and one and a half. According to Terri, "without medical expertise Mike would have missed the younger completely. He thoroughly enjoys them, though they wear him out quickly (me too!)."
An Update - 2/20/05
A quick update following the alimta chemo treatment last Tuesday. The doctor says there is no sign of tumor activity at this time so will have several more chemo treatments and then take a break. He hesitates to make any prognosis statements. Says that Mike is "so far out of the box" already, that we're in new territory. He is almost three years from diagnosis and the mean survival is thirteen months from diagnosis. Doc is pleased that whenever tumors have returned the alimta has treated them successfully. Also feels the surgery and follow-up treatment contribute to longevity. He wants to continue the current medication level and encourages us to do whatever we want and feel capable of handling, such as traveling. Does feel that Mike will be here next year-hooray! We were encouraged by our session and are looking forward to making some traveling plans. Mike has a list of things and people he wants to see. Hopefully we can do some of those things.
Love,
Terri
*** Mr. Mike Miller passed away on December 17, 2005 ***
Mike's cancer became active last summer and he had radiation before we did our late summer traveling.
Caravanned with good friends to South Dakota-Badlands, Mt. Rushmore, Rapid City, Deadwood, Custer- and then the Wisconsin Dells. Loved traveling in the motorhome at our pokey pace. Then we spent a week on a Riverbarge trip on the Ohio River-again, very relaxing.
In October it was obvious that his body was negatively changing again and he spent much time in and out of the hospital. The news in November that mesothelioma was in the remaining lung wasn't unexpected but was certainly unwanted.
The hospice service was excellent and always soliticious of our wishes regarding his treatment. The goal was to be comfortable with no pain.
Unfortunately, the open wound from that infection in June 2004 was the final, as Mike would say, "bump in the road". He began massive hemorrhaging which could not be stopped without major invasive exploratory surgery. That was not an option.
The hospital moved in a cot in addition to the chair/bed and the family was together. Our son Steve, daughter Lynn and her husband Chad, and I camped out for a day and a half. Mike's humor never waned and at times, a listener outside could hear gales of laughter.
During the nights we took turns sleeping and sitting with him. I know he and I had several talks and the others did also. He was so ready to end the misery of meso. It was with sadness for our loss and joy for his release that we watched him pass away.
One truly heart-warming experience was the many young adults who shared with Mike how much he had meant to them. He was a father to Lynn and Steven but a "second father" to many others. They were eager for him to know their feelings of love and respect. He leaves a remarkable legacy and I'm so grateful we met on that long-ago "blind date".
We are including MARF for donations in his memory.
Yours, Terri