#so i knew the cancer had probably spread and she was having neurological symptoms

[mutualmango]

what's got you in a funk? (don't answer if u don't wanna)

well you sent this before i posted anything about my cat but i guess those posts clarify a bit. i was already in a funk for no particular reason (maybe seasonal) but recently kiwi started showing some signs of her condition deteriorating. i was trying to take it day by day and not assume the worst but part of me knew this was coming and i was preparing myself

[enzaime-blog]

Bob’s Brain Tumor Story

New Story has been published on http://enzaime.com/bobs-brain-tumor-story/

Bob’s Brain Tumor Story

One Valentine’s Day, Bob collapsed with a seizure. Emergency room doctors diagnosed him with a high-grade glioblastoma, the most aggressive and deadly form of brain tumor. He came to Memorial Sloan Kettering’s Brain Tumor Center where he received surgery, radiation therapy, chemotherapy, and rehabilitation.

It was on Valentine’s Day 1996, when Bob Immerman collapsed. The 56-year-old architect had been working on a project in Manhattan and had returned to the office after showing the building to a structural engineer. A few minutes later Bob fell to the floor, foaming at the mouth.

An ambulance was called, and paramedics took Bob the closest hospital, a few blocks away.

Meanwhile, Bob’s wife, Minna, who was a preschool teacher in Larchmont, New York, was having a Valentine’s Day party for her class. When she got the call that Bob had “collapsed,” her first thought was that he must have had a heart attack or a stroke.

After completing blood work, the doctors told the couple that Bob had had a grand mal seizure, which is an electrical discharge, or “storm,” in the brain that causes an involuntary movement of the muscles, usually resulting in collapse and loss of consciousness.

“You Don’t Want it To Be a Tumor”

Trying to identify possible explanations for Bob’s seizure, the doctors asked him if he had had any symptoms prior to this incident. Bob and Minna recalled that in recent days he’d had a few mild headaches, and some episodes of “time lapses,” during which he experienced some blackouts and general confusion.

When doctors performed a computed tomograph (CT) scan of his head, they saw something in the frontal lobe of Bob’s brain. But they couldn’t tell from the scan if the lesion represented damage from a stroke or if what they were seeing was a tumor. Then they did an MRI.

“I remember asking the doctor, ’Which do I want it to be — a stroke or a tumor?’ I didn’t even understand which was worse,” says Minna. “And the doctor said, ’Well, you don’t want it to be a tumor.’”

The MRI showed that the mass was a tumor, but doctors couldn’t tell if it was benign or malignant. Benign or not, it needed to be removed, and brain surgery at the local hospital was set for two days later. “’What would you do if this were you?’” Minna remembers asking the doctor, a family friend. “He said, ’Listen, you’re talking about a brain tumor. If I were you, I’d go to Sloan Kettering.’”

They made some calls, and soon Bob was scheduled for surgery with neurosurgeon Mark Bilsky on February 23. Then — through ten inches of fresh snow — Bob was transferred to Memorial Sloan Kettering.

The Night Before Surgery

“People sometimes ask how we decided to have surgery. The way we saw it, there was no choice,” Minna explains. “Bob had a brain tumor. We didn’t know if it was benign or malignant, but he was having seizures. The tumor had to be removed. So it wasn’t a question of ’should we’ or ’shouldn’t we’? We knew he had to have surgery.”

The night before the operation Dr. Bilsky visited Bob’s room. Bob asked him to describe what would happen the next day. Dr. Bilsky said that he would do that and left the room to retrieve a medical textbook. When he returned, he opened the book to the section on brain surgery. With great patience, Dr. Bilsky used the diagrams from the textbook to show Bob exactly what he was going to do during surgery.

Remembering the moment, Bob says, “I just wanted to know what to expect, what was going to happen. And I felt better knowing.” Although hearing the details was frightening, Bob and Minna both appreciated Dr. Bilsky’s frankness and honesty. “I’ve always found that if you ask the doctors at Sloan Kettering a question, you get an honest answer,” says Minna.

“Dr. Bilsky is one of the nicest people I’ve ever met,” says Bob. Minna echoes, “He’s very approachable, and open, and reassuring. Whenever we see him on the neurology floor, Bob and Dr. Bilsky hug each other.”

Former president of his synagogue in Larchmont, Bob brought with him deep faith. Throughout his entire course of treatment, he maintained a positive attitude and a confidence that he would survive. The morning of surgery, Bob was lying on the gurney, about to be wheeled to the operating room. A nun drew up beside him and asked, “Would you mind if I prayed with you?” Bob replied, “Not at all.” He remembers thinking that he would welcome all the help he could get.

“When He Said ’Glioblastoma,’ I Stopped Breathing”

Minna waited for Bob to come out of surgery with her daughters, Suzanne and Gaby, and a group of friends. Every hour a nurse liaison would come out to update Minna on where they were in surgery. “So much of the anxiety about surgery is about not knowing,” she says. “But to be constantly reassured that my husband was doing well was extraordinary because the surgery took many, many hours.”

When the surgery was over, Dr. Bilsky called the family together. He told them that Bob’s tumor was a malignant glioblastoma, but that he and his surgical team had removed as much of the cancerous tissue as they could see.

Recalling her reaction to the news, Minna says, “When he said ’glioblastoma’ I stopped breathing. The doctors had said as they were first looking at the MRI, ’It looks contained, which is really good because what you don’t want is for it to be glioblastoma.’ So when Dr. Bilsky said it was a glioblastoma multiforme, I thought, ’This is the worst it could be.’”

Glioblastoma — also called glioblastoma multiforme or grade IV astrocytoma — is the most common malignant brain tumor in adults between the ages of 45 and 70. It tends to grow and spread aggressively and is probably the most resistant of all brain cancers to treatment.

One of the challenges of treating glioblastoma is that it is not contained. Instead, it is shaped like a hand, with microscopic “fingers” that fan out and touch many different parts of the brain. This makes a glioblastoma hard to surgically remove because these fingers can penetrate the folds of the brain and are impossible to see, and therefore impossible to remove. Remnants can multiply and form a new tumor. These remaining cells are managed and eliminated through radiation therapy and chemotherapy.

Following surgery, Lisa DeAngelis, neuro-oncologist and Chair of the Department of Neurology, was brought in to oversee the next steps in Bob’s treatment.

Complications After Surgery

Most patients are discharged in less than a week following brain surgery, but a number of setbacks kept Bob in the hospital for six weeks. Among other things, he developed thrush sores inside his mouth (a condition in which a type of yeast grows out of control in moist skin areas of the body), and rashes. Once he was finally discharged, he had to return to the hospital four days later because a blood clot had formed behind his knee.

“In some ways it was good that we couldn’t really focus on the cancer and the prognosis because we were so busy with the day-to-day medical issues,” says Minna. “Whatever could happen did happen.”

Bob was also allergic to many medications, which made managing his care following surgery extremely challenging. “His allergies were such a problem,” recalls Dr. DeAngelis, “that I jokingly said to him that if he saw a pharmacy, he should cross to the other side of the street.”

After neurosurgery, all patients are given a medicine called Decadron (a steroid administered to reduce swelling). When Bob took the drug, he developed a case of hiccups that lasted for weeks.

During this time, Dr. Bilsky came to visit Bob, and sat holding his hand and listening. “He’s a surgeon with probably a million things on his plate,” observes Minna. “But when Dr. Bilsky’s with you, you’re his whole focus. You never have the sense of someone who’s looking at his watch.”

Having been in the hospital for so many weeks, Bob and Minna knew the entire staff working on the floor. “Everyone from the people who clean the rooms, to the patient escorts, to the nurses and doctors — everyone is involved in your care,” Bob recalls.

Drawing Strength from Family & Friends

People react in very different ways when faced with a health crisis. Some withdraw and choose to deal with the problem on their own. Others turn toward family and friends. Bob and Minna chose the latter approach, welcoming the support of friends and family throughout the long ordeal of Bob’s treatment.

“We’ve learned that cancer first affects the patient, then the family, and then the community,” reflects Minna. “The response to Bob’s cancer was extraordinary. Everyone got involved.”

Minna continues: “I think there are people who live their lives in a private way, and people who live their lives more publicly. That was how Bob and I were. Anybody who could be supportive, we told. It wasn’t a secret, because that’s our style.”

 I just wanted to know what to expect, what was going to happen. And I felt better knowing.

Bob Immerman

On Friday nights, a group of their friends would come from synagogue, bringing their prayer books, and hold Friday night services in Bob’s hospital room. They would order pizza they dubbed “Shabbat pizza,” and would eat it after the informal services.

At times the support, although well-intentioned, could be overwhelming. The phone was ringing off the hook, and Minna would often come home to 30 messages on the machine. Too exhausted to return all the calls, she began to feel unable to keep her friends up-to-date with Bob’s health. Since his initial diagnosis came in the years before email, a friend suggested that she leave a daily update on the family’s answering machine. She began to leave a daily update on the machine — “Bob is finally out of bed,” or “Bob has thrush,” or “Bob has a rash,” or “Come see Bob, he needs company,” or “Don’t come see Bob, he doesn’t need company.”

The Next Five Years of Treatment

After the problems subsequent to his surgery subsided, Bob was able to begin the next phases of treatment. First was a six-week course of radiation therapy. Dr. DeAngelis then proposed a course of chemotherapy. During the first treatment, Bob had such a bad reaction — his white blood count dropping dangerously low — that Dr. DeAngelis decided to stop chemotherapy and monitor any further cancer growth through imaging techniques.

In the beginning, Bob would get an MRI every two months, then every three months, and finally every six months. Bob and Minna made a family rule that Bob could go alone to get the scan, but when the results were read, Minna had to be there too. Their doctors would schedule the scan and the appointment to discuss the results for the same day, so that the Immermans would not have to wait days for the report.

The scans — any one of which might have revealed a recurrence of cancer — would frighten Minna. But Bob was different. He remained optimistic, never thinking that the results would be that the cancer had returned.

They also found that being treated at Memorial Sloan Kettering took away some of the anxiety because many of the other patients at the hospital had cancer, and the fact had a calming effect on them. “I never felt, ’Why us?’ because I could just as well have asked why anyone else in the waiting room?” says Minna. “I’ve never felt that we were singled out.”

“I think the family’s response to Bob’s illness showed exactly who they are as people,” says Dr. Bilsky. “You can’t hide those things when someone gets sick and you have to go through something like this. They are an incredibly warm and loving family, and we became a part of their lives. They’re just great people.”

As time went on, Bob was able to get back to work — part time at first and eventually full time. Life returned somewhat to normal.

A few years after his initial surgery, Bob started to exhibit symptoms similar to the ones he experienced before the first surgery, including periods of losing time. Bob immediately took himself to Memorial Sloan Kettering for evaluation. The PET scan showed some “hot spots,” or areas of potential tumor activity. Dr. Bilsky advised a biopsy — the only way to make sure it was not a recurrence. A brain biopsy meant another brain surgery, but this time Bob was only in the hospital for a weekend. The hot spots were not cancer, but treatment-related damage, probably caused by radiation.

Bob still has several continuing health issues as a result of his surgery and treatment. His seizures persist, but he takes anti-seizure medication to keep them under control. The medication unfortunately makes him very tired. Another consequence of his brain tumor is that Bob has experienced a mild personality change. One symptom of the change is that he gets overwhelmed by multi-tasking, by attempting to do two things at once. These health and emotional changes have been a challenge for Bob, Minna, and their family to accommodate, but they are grateful that Bob is still alive and doing well.

Ten Year Anniversary, 2006

Early in his treatment, Bob asked the radiation oncologist how long he could expect to live. Bob recalls that the doctor said he would have “maybe 18 months.” With a twinkle in his eye, Bob says, “And here we are — ten years later. All I know is that when it comes to this kind of cancer, this is the best case scenario. But they never said, ’Cure.’ No one ever says cure.”

Ten years have passed since the Valentine’s Day in 1996 when Bob had his first seizure. His March 2006 follow-up appointment happened to fall almost exactly ten years to the day after Bob’s first surgery. To mark the occasion, Minna confirmed that both Dr. DeAngelis and Dr. Bilsky were going to be in clinic that day, and she brought them both flowers to celebrate. “They deserved to celebrate as we did,” says Bob. “We’ve been together with our doctors so long that we regard them as old friends.”

Minna continues: “We chat with Lisa [DeAngelis] about things other than Bob’s medical condition, the things that matter to him — his singing in our temple’s choir, the Berkshire Choral Festival, our travels, and most important, our grandson. Lisa has known Bob long before he became a grandpa!”

“They are delightful and special people,” says Dr. DeAngelis. “The fact that Bob’s life has continued to be so full — in terms of family, working, and everything else — is all because of who they are. They have really worked hard to reclaim their lives and to make sure that they are in control.”

The couple recently celebrated their 40th wedding anniversary, and Bob and Minna now spend almost every weekend in their house in the Berkshires, which they bought to be close to their grandson. They have taken some trips since Bob’s diagnosis in 1996 and continue to enjoy the opera and theater in Manhattan.

Asked if anything about their lives has changed since Bob’s diagnosis, Minna says that they have more of a “Let’s-do-it” attitude than before. “We don’t say, ’Oh, let’s put that off, or that we don’t have the time or the money for something.’ It’s a mindset, an attitude about what’s important. Save it for a rainy day? This is a rainy day!”