Robert "Bob" Rahe is a 50 year old, self-employed entrepreneur
and former school teacher who has malignant pleural mesothelioma. Bob's
story reenforces the adage that "when God closes a door, He opens
a window." Bob is learning day by day that the window, at least for
now, remains open. He intends to keep it that way.
Bob began experiencing right-sided abdominal pains in early July, 1997.
The pain was most intense when he was getting out of bed or out of his
car. Because the pain was intermittent, he did not seek immediate medical
attention. But the pain grew worse.
Bob went to see Dr. Karen Joyce in early August, 1997. Dr. Joyce ordered
chest films, which showed a right-sided pleural effusion. Dr. Joyce referred
Bob to a pulmonologist, Dr. Stephen B. Smith.
Dr. Smith performed a bronchoscopy, which was normal. A chest CT scan was
also performed, once again revealing the right pleural effusion with no
obvious pleural based lesion or abnormal pleural enhancement.
That same day, Bob also underwent a right thoracentesis. Dr. John T. Batter,
a thoracic surgeon at the Bishop Clarkson Memorial Hospital in Omaha,
Nebraska, removed fluid from Bob's lung. Although plenty of fluid
was removed, the doctors could not make a definitive diagnosis.
On September 17, 1997, Bob returned to the hospital and Dr. Batter performed
a video-assisted thoracoscopy. During the procedure, Dr. Batter removed
small nodules from Bob's diaphragm, the visceral pleura and parietal
pleura. The pathologists who examined the tissue samples diagnosed Bob
with diffuse malignant pleural mesothelioma.
Bob's sister Lisa Whiting contacted our office in October, 1997. She
was concerned because the doctors in Omaha were not experienced with the
treatment of mesothelioma. Lisa and her family had been reading our website
and they contacted Dr. David Sugarbaker in Boston (Brigham & Woman's Hospital). Dr. Batter, who had heard
Dr. Sugarbaker speak at a medical conference, was impressed with Dr. Sugarbaker's
expertise. Dr. Batter wrote a letter of introduction and forwarded Bob's
medical records. Bob followed up by traveling to Boston for preliminary
testing. He was scheduled for an extra-pleural pneumonectomy (EPP) later
Bob returned to Boston on October 23, 1997 for the EPP. He was scheduled
to have an MRI prior to the surgery. Bob was apprehensive about the MRI.
Speaking from experience, I know how claustrophobic it can be when you're
inserted into the center hole of what looks like a very large roll of
toilet paper. Bob wanted to be sedated. According to Dr. Sugarbaker, his
team offered to sedate Bob or put him under general anesthesia. A miscommunication
arose, however, and the MRI was not performed. Without an MRI, Dr. Sugarbaker
could not perform the surgery. Rather than remain in Boston for several
more weeks, Bob returned to Nebraska without the surgery.
Upon learning that Dr. Sugarbaker did not perform the surgery, we suggested
that Bob contact Dr. James Mault, a cardio-thoracic surgeon with the University
of Colorado Medical Center in Denver. After visiting with Dr. Mault, a
few days later Bob was scheduled for surgery in Denver.
The surgery was performed on November 25, 1997. Dr. Mault first performed
a bronchoscopy to determine whether the tumor had invaded the distal trachea
or proximal right bronchial tree. Fortunately, there was no invasion.
Dr. Mault proceeded with the EPP and pericardiectomy. Ten hours and forty-five
minutes later, Bob awakened in recovery. According to the records, he
had tolerated the procedure well.
On the fifth post-operative day, Bob experienced arrhythmia -- abnormal
beating of the heart. The doctors were able to control the arrhythmia
and Bob continued to recover. He was discharged from the hospital on December 4, 1997.
On December 2, 1997, I received the following E-mail from Lisa Whiting.
This makes it all worthwhile.
I cannot thank you enough for recommending Dr. James Mault at UCHSC in
Denver. He performed an Extrapleural Pneumonectomy on my brother on November
25th. I have to tell you that the first time I ever called his office,
just asking about credentials, etc., Dr. Mault got on the phone, himself,
and spoke to me for about twenty (20) minutes. After our awful experience
in Boston, Dr. Mault has been like a "breath of fresh air."
Bob's surgery took nearly eleven (11) hours, and we were frantic by
the time Dr. Mault came out to talk with us. Much to our surprise, he
said that the surgery had taken longer because the tumors were so small
that they were more difficult to remove. He also said that this was the
"best" case of Mesothelioma that he's treated! He indicated
that the Mesothelioma was in early stages and that the prognosis looked good.
We have a long way to go, we know that. But, we have so much more hope
now that Dr. Mault has done the surgery. Having a surgeon that cares enough
to communicate effectively makes all the difference!
By the way, Bob never did have an MRI. As it turns out, Dr. Mault requested
a CT Scan, which he said was more than enough. My first thought was, "We
wasted 2 ½ months because of an MRI that wasn't even necessary!"
But that's not true; waiting for Dr. Mault gave Bob and our family
peace of mind, and that means a lot!
Thanks, again, Roger!
[Note: I try to leave this website forum open to everyone. I am not a doctor
and I am not trained to endorse one medical procedure over another. However,
the issue over whether an MRI should be preferred over a CAT scan remains
controversial. Several doctors, including Dr. Sugarbaker, require the
MRI. By reprinting Lisa Whiting's letter in its entirety above, I
am not necessarily endorsing her views about whether an MRI is necessary or not.]
Today, Bob is doing his best to rebound. He is fourteen months post-surgery,
and his CT scans have been negative for new tumors. Bob has not had to
have chemotherapy or radiation therapy.
Bob continues to work as a partner in a health care assistance business.
He takes one day at a time and continues to enjoy the "fresh air
from the opened window."
POSTED MARCH 4, 1999
An Update -- 6/1/99
Correction Bob has had both chemotherapy and radiation since his surgery
in November of 1997. He had four cycles of chemotherapy [carboplatin and
taxol] in Omaha beginning in January of 1998. That was followed up with
6 weeks of radiation treatments. He is doing much better and is due for
his semi-annual CT Scan on June 10th. Bob is having blood tests every
3 months and CT Scans every 6 months.
Bob has gained back about 15 of the 45 pounds he lost after surgery, which
in this context is good news! Bob wants to tell everyone, in his words,
"I owe my life to Dr. Mault and his assistants at University Hospital,
as well as Dr.'s Silverberg and Prowse, in Omaha."
An Update -- 1/25/01
Bob reports he is feeling better than ever and wants fellow mesothelioma
patients to know "you can survive - I'm proof positive."
He continues his semi-annual CT Scans, blood tests and chest x-rays and
has not required medication, chemotherapy or radiation treatments since
the middle of 1998. As a final note from Bob, he knows he will not be
running any marathons but under the circumstances he is learning to adapt
to and make the best of his new lifestyle.
An Update -- 8/8/01
Bob continues his follow up visits with his doctor, where he undergoes
blood tests, chest films and a CAT scan. His next appointment is in September.
He is not taking any medication at this time.
His sense of humor remains intact, continuing to joke about how he is not
ready to run any marathons. Unfortunately, the current heat wave this
summer has made his breathing noticeably difficult.
An Update -- 10/4/04
From the middle of 1998 until September of 2003, Bob remained cancer free.
He continued faithfully with his semi-annual routine of follow up visits
with his doctor, CT scans, blood tests and chest x-rays.
In late summer of 2003, Bob noticed that his waistline was expanding. He
felt a bit more sluggish and tired. His semi-annual visit to his doctor
prompted further testing after the CT scan revealed a small tumor. That
tumor was biopsied and determined to be benign. During the operation,
the surgeon removed fluid from his abdominal cavity. The specimen was
immediately sent to the laboratory for pathological evaluation. The tests
confirmed what the surgeon suspected. Bob's mesothelioma had returned,
this time invading his abdominal cavity.
Now six years later, Bob faced another battle with mesothelioma. After
reviewing all of his treatment options, he ruled against surgical intervention
and opted for treatment with chemotherapy. Bob began receiving Alimta
with Cisplatin in September of 2003. After three of four rounds of chemotherapy
the abdominal swelling ceased. The combination of Alimta with Cisplatin
was continued until July of 2004. Today Bob is receiving only Alimta every
four weeks. The CT scan in September was clean.
His upbeat spirit keeps him going. He tells us that he still leads a pretty
normal life. He works part-time from his home and only experiences the
pesky side effects of chemotherapy for a week after treatment. Then it's
back to business as usual. He boasts, "if you saw me on the street
and didn't know me, you'd never know I have cancer. But I can't
handle much more than one flight of stairs."
Bob Rahe passed away on July 30, 2008