Mike’s Story

Links to the Lighter Side
In October of 1996, Mike had an excruciating and debilitating migraine headache. Over the course of the next year he would get migraines about once a month, which gradually increased in frequency. He had migraines occasionally in the past, so he thought he was just having a lot of bad headaches, which combined with the stresses of his new job and our recent move from Pennsylvania to New York City didn’t seem unusual. When the migraines started coming more frequently, he saw a doctor who diagnosed him with a sinus problem. He usually felt headachey in the morning, and sometimes he felt nauseous.
It wasn’t until February 1998, when he had a grand mal seizure and was rushed to NYU Medical Center, that a cat scan was done and the doctors told us he had “a large lesion on his brain.” In the ER, we met Dr. Michael Gruber, director of neuro-oncology at NYU. He told us that Mike needed surgery to remove his brain tumor, which was about the size of a lemon on the right frontal lobe of his brain. He referred us to Dr. Patrick Kelly, director of neurosurgery at NYU Medical Center. Mike’s brain was so swollen from the tumor growth that he had to be kept in the hospital for a week on lots of medication until the swelling went down before surgery. He was given IV Mannitol to help reduce the swelling. Since Mike was left handed, and the tumor was in the right frontal lobe, many tests were done to determine if surgery could be performed without damaging the speech areas of the brain. The doctor’s found that the Broca’s area (the speech part of the brain) of Mike’s brain was in several different spots, so there was no danger in removing his speech center during surgery. Mike also had an MRI angiogram done, which traced the blood vessels of his brain and helped the doctor’s map out his surgery. Mike was the favorite patient of all the nurses because he loved to joke with them and make everyone laugh.
On February 17, 1998, Dr. Kelly performed brain surgery and was able to remove most of the tumor. Mike came home 3 days later, with lots of medication, lots of directions, and a huge scar across the top of his forehead that stretched from one ear to the other ear right at the hairline. The stitches on his surgery scar kind of looked like a baseball. Mike loved baseball, so of course he made lots of jokes about how he looked. He was always so cheery, even in the worst of times. Soon, after another grand mal seizure and trip to the ER, we discovered Mike was allergic to his anti-seizure medication Dilantin. Dilantin caused a severe drop in his platelet count and did not control his seizures. His medication was changed to Phenobarbital and we were referred to a seizure specialist, Dr. Pacia, who monitored Mike’s anti-seizure medication. The Phenobarbital made Mike very tired, so we tried Depakote, but it did not control his seizures either. Sometimes he would have focal seizures, where his body was ok, but he just couldn’t speak for a few minutes. He could hear me and understand me, but could not speak Other times he would have petit-mal seizures, where his body would shake for a minute, but he remained conscious. The scariest were grand mal seizures where his entire body would shake violently, he would lose consciousness and stop breathing long enough to turn blue before he started breathing again. Mike’s first seizure was a grand mal, and he had three subsequent grand mal seizures the entire time he was sick. Grand mal seizures are terrifying to witness. The doctors told us they were like electrical connections in the brain misfiring because the tumor was invading normal brain tissue, so the normal brain “connections” were not firing correctly. Mike would feel exhausted after regaining consciousness (usually with the aid of medication administered by the EMT or in the ER), and sometimes he would forget where he was afterwards. We got to know the 911 EMT team very well. Phenobarbital was the best drug to control Mike’s seizures.
On February 17, 1998, Dr. Kelly performed brain surgery and was able to remove most of the tumor. Mike came home 3 days later, with lots of medication, lots of directions, and a huge scar across the top of his forehead that stretched from one ear to the other ear right at the hairline. The stitches on his surgery scar kind of looked like a baseball. Mike loved baseball, so of course he made lots of jokes about how he looked. He was always so cheery, even in the worst of times. Soon, after another grand mal seizure and trip to the ER, we discovered Mike was allergic to his anti-seizure medication Dilantin. Dilantin caused a severe drop in his platelet count and did not control his seizures. His medication was changed to Phenobarbital and we were referred to a seizure specialist, Dr. Pacia, who monitored Mike’s anti-seizure medication. The Phenobarbital made Mike very tired, so we tried Depakote, but it did not control his seizures either. Sometimes he would have focal seizures, where his body was ok, but he just couldn’t speak for a few minutes. He could hear me and understand me, but could not speak. Other times he would have petit-mal seizures, where his body would shake for a minute, but he remained conscious. The scariest were grand-mal seizures where his entire body would shake violently, he would lose consciousness and stop breathing long enough to turn blue before he started breathing again. Mike’s first seizure was a grand-mal, and he had three subsequent grand-mal seizures the entire time he was sick. Grand-mal seizures are terrifying to witness. The doctors told us they were like electrical connections in the brain misfiring because the tumor was invading normal brain tissue, so the normal brain “connections” were not firing correctly. Mike would feel exhausted after regaining consciousness (usually with the aid of medication administered by the EMT or in the ER), and sometimes he would forget where he was afterwards. We got to know the 911 EMT team very well. Phenobarbital was the best drug to control Mike’s seizures.
The pathology report came back stating Mike’s tumor was a ganglioglioneuroastrocytoma (or Mixed Glioma). The pathology was done at John’s Hopkins and also at NYU. It was malignant, but was considered a slow growing tumor. The plan of action was “wait and see”. He needed follow up MRI’s every three months, but the doctor said that the remnants of the tumor in Mike’s brain might never grow again, or grow so slowly that he could live a long and healthy normal life. We were so relieved! Mike’s first MRI after surgery was great, no tumor growth and a special test that was done to determine if cells were growing quickly or not came back as “cold”, meaning no cancer cells were growing! We were so happy! We started attending a monthly support group at NYU for brain cancer patients and their spouses. It was helpful, but a little scary as some of the patients were not doing so well. Mike’s best friend, Tom, got us a laptop computer so we could be connected to the Internet. We signed on to the BrainTmr list for support and information. I spent most of my free time searching for the cure for brain tumors on the Internet. On April 2nd 1998 we celebrated Mike’s 31st birthday!
In August of 1998, Mike started showing signs of tumor re-growth. He started having seizures even on his medication, and he had horrible migraine headaches again and was feeling nauseous all the time. An MRI showed that the tumor had re-grown in the right frontal lobe, and was now the size of a grapefruit. We both were very upset and shocked that the original “slow–growing” tumor had come back so fast. Mike said to me in the hallway outside the doctor’s office, “I don’t want to die!” We hugged each other and cried. I said, “You’re not going to die, honey.” We were both terrified.
On September 3rd, Mike had his second craniotomy, this time with stereotactic surgery, which was invented by his neurosurgeon, Dr. Patrick Kelly. In preparation for the surgery, the nurses shaved the right side of his head and placed markers that looked like lifesavers all over the right side of his head. They were going to take an MRI with the markers on and this would aid the doctor during surgery somehow. This was a very fast growing tumor, and Mike would need to follow up his surgery with radiation in order to kill the remaining tumor cells. The neurosurgeon looked very grim, and he explained that this was a very dangerous tumor and the prognosis was not very good. This of course was very upsetting to us. Mike said to me again in the hospital, “I don’t want to die.” Mike was in a lot of pain after his second craniotomy, and he told me he would never have surgery again. While still in the hospital, Mike arranged with my sister to get tickets to see a show at Radio City Music Hall for my 29th birthday. He was always so thoughtful, even when he was so sick. He was truly more concerned about those he loved than he was about himself.
Six weeks after surgery, Mike started his daily regimen of radiation to the brain. The radiation oncologist, (whom we referred to as Dr. Doom, because she was so negative), told us the scary news that radiation was not a cure; it would only slow the growth of the tumor. She advised us, as a young married couple, to go to the sperm bank before radiation started. If we ever planned on having children, we would need to make sure we did this before the treatment started, as sterility is one of the side effects of radiation. [We’ve since heard opposite opinions, so check with your own doctor on infertility issues]. She also recommended that Mike see a neuro-psychologist, who would assess his mental capacity and monitor him throughout the radiation process. Another long-term side effect of radiation to the brain is impaired mental functioning and IQ. Mike was so happy to outsmart the neuro-psychologist’s test! She pronounced him as highly intelligent even after two brain surgeries left him with only ¾ of his brain and his fantastic memory was still very much intact He loved to make jokes about that!
In preparation for radiation, the Radiation technologists tattooed a dot on Mike’s forehead and by his ears to make sure his head would be in perfect alignment for his daily doses of radiation. Mike thought it was incredibly funny to have a tattoo on his forehead. He was such a good sport. After 2 surgeries, his scar was quite noticeable and people would stare at him a lot or ask him about it, and he didn’t mind talking about his scar. Every day for six weeks (with weekends off) Mike went to Radiation Oncology at NYU Medical Center. The actual radiation of his brain only lasted about a minute, but the technicians took a long time to make sure his head was lined up in exactly the same way everyday. Mike became friendly with everyone there from the security guards to the nurses and technicians, and he even managed to make Dr. Doom smile once in a while. He had that special quality of making friends wherever he went. Mike would go to work in the morning, and leave at around 3:30 and take a cab to the hospital. After about a week, his hair started to fall out in patches, then in clumps. He hated that. I suggested that we could just shave it off instead, which he thought was a great idea. I used my electric leg-shaving razor and shaved his head. All but the last two inches of hair in the back were affected by the radiation. Mike felt very cold without his hair, so he took to wearing baseball hats. His best friend had sent him a bunch of hats with different sports teams that he loved. The radiation made him feel very tired, and a bit nauseous. It also caused his brain to swell; he would get headaches a lot and his Decadron levels were increased to control the brain swelling. We celebrated our 3rd wedding anniversary on October 7th.
Mike got to take weekends off from radiation, so during that time we were able to go to our Homecoming weekend at William and Mary, which is where we met when we were in college. I was very nervous to take him on an airplane because of the pressurization, and I was worried he might have a seizure onboard. But, after checking it out with all of his doctors, off we went to Virginia. It was great, although it was to be Mike’s very last homecoming weekend. We bought a video camera for our anniversary, so we brought it along and took lots of video of the trip. Mike felt very tired, but we were both glad to get out of the city and do something other than “brain tumors” for a few days. Mike wore his William and Mary baseball hat most of the time. He was bald from radiation, and at this point in his treatment, the Radiation Oncologist was doing “coning”. Coning is where more concentrated doses are used on the tumor bed, so instead of his “dot” tattoo, he had 3 large blue “X” marks on his forehead, covered with clear tape. Mike made lots of jokes, about “X marks the spot”. He always had a way of using humor to deal with what would have been very upsetting to most people.
After his radiation was finished, we had to wait 6 weeks for the swelling to go down in his brain before an MRI would be done to determine the effectiveness of the treatment. For Thanksgiving 1998, we were able to travel again, and we spent time with my family on Long Island, and with Mike’s family in Virginia. It was so good to be with everyone, it helped us feel somewhat like a normal couple again to spend the holidays with our families and to videotape the memories. On December 19th, Mike was scheduled for his MRI with contrast, as well as the additional test to see if the tumor cells were ‘hot’ (growing) or ‘cold’ (not growing). Mike’s MRI results were good, but unfortunately, his cell test came back “hot”. This was very upsetting and devastating to us. We felt like we had done the radiation for nothing. Mike’s doctor explained that we would need to start Chemotherapy treatment right away because a hot reading meant that the cells were dividing very quickly and the tumor was growing.
We celebrated the New Year, 1999, at home with Mike’s favorite drink, ginger ale! We were especially happy to say goodbye to 1998, the awful year of brain tumors. We had to get Mike’s blood levels checked regularly to make sure his white and red cells were recovering from the chemotherapy. In late January, Mike began having memory problems and headaches. He always had a fantastic memory, so it was surprising that he was forgetting things like what he had for lunch or if he had lunch at all. His next MRI showed that the tumor had regrown but this time was in the left frontal lobe. It had crossed the corpus callosum (the part of the brain that connects the right and left sides) and was considered inoperable because the tumor was now invading brain tissue that was needed for normal daily functioning. Our neuro-oncologist advised another round of chemotherapy to “hold” the tumor until Mike could be admitted to a clinical trial, which was investigating the use of high-dose chemotherapy and stem cells. There were not many options left now that the tumor had re-grown for a 3rd time and was now considered inoperable. We discussed the options with our families and it seemed that the clinical trial was our best shot at long term health. Mike said, “I’ll do whatever it takes to stay here with you, Kath.”
In early February, Mike had surgery to insert a double Hickman Catheter. This was to help protect his veins from the Chemo, as well as to administer the Chemo more directly so it would be pumped directly into his heart. The catheter tubes had to be cleaned with saline and flushed with heparin in order to prevent blood from clotting in the tubes. The nurse showed me how to clean and change the dressing, and gave us supplies of gauze, iodine and alcohol swabs, heparin “push” syringes, and saline “push” syringes and sterile replacement caps for the catheter tubes and gloves so I could change the dressing at home. A few weeks later, Mike was given the Chemotherapy drug, Etoposide as an outpatient in his neuro-oncologist’s office. Mike became very friendly with Anita, one of the nurses. She understood his sense of humor, and laughed at his jokes. Somehow, Mike even made getting Chemotherapy seem easy with his good-natured humor and personality. The MRI taken at the end of February showed good news, the tumor had not grown, and appeared to be necrotic tissue (dead tissue). This bought us a little time to investigate the clinical trial.
The clinical trial involved using a high dose chemotherapy protocol of Carboplatin, Etoposide, and Thiotepa. The levels of the chemo drugs would be virtually lethal, in that they would kill off all of his white blood cells, leaving him extremely vulnerable to infection. His platelets and red blood cell counts would drop dramatically also. Before chemotherapy could be administered, the doctors needed to save some of Mike’s stem cells for transplant back into his body after chemotherapy. Stem cells are the cells that make all forms of cells. Specifically, Mike’s own stem cells would be separated from his blood before the High Dose Chemotherapy would be administered. The high dose chemotherapy would then kill off all of Mike’s white blood cells and most of the red blood cells and platelets. When Mike’s saved stem cells were transplanted back into his body, they would re-grow his white, red and platelet cells. He would be giving himself a stem cell transplant with his own cells. Then, six weeks later, the whole process would start again. This clinical trial was for a double autologous stem cell transplant with high dose chemotherapy. We were very nervous about the clinical trial, but we were running out of treatment options.
The doctor running the clinical trial was Dr. Ahmed, to whom we were referred by our neuro-oncologist. We met with him to discuss the options, and it seemed that this might be our only chance for long-term survival. Getting into the clinical trial involved approval from my insurance company, who initially denied it. The nurse explained to me that this usually happened. So we requested an appeal and sent along letters from all his doctors with his MRI’s and case history to be reviewed by an independent review team of medical consultants. Luckily, a few weeks later, the outside review board recommended their approval for the clinical trial to our insurance company. The clinical trial was being administered at Cabrini Medical Center in Manhattan. He would need to stay in their bone marrow transplant unit to ensure a sterile environment. A stem cell transplant is similar to a bone marrow transplant, as both attempt to re-grow blood cells.
In preparation for the clinical trial, Mike’s stem cells were harvested. A catheter was placed in his jugular vein which lead to a separation machine, where his stem cells would be separated out from his normal blood cells, then another tube would return the blood back into his body. The process took about four hours to capture enough stem cells that would be stored for transplant after the chemotherapy. The high dose chemotherapy was the hardest treatment Mike ever had. He was receiving lethal doses of chemo drugs in an effort to cross the blood/brain barrier and kill the tumor. He was admitted to the transplant unit at Cabrini medical center. The Chemo affected his body very harshly. He required constant blood transfusions and his digestive system was a complete mess. He developed painful sores in his mouth and throat. The nurse gave him a lidocane/kaopectate mixture to help his delicate digestive system. He could not eat, and could barely drink, and had to be fed though a tube. It was a mixture of vitamins called TPN (total parenteral nutrition). He spent most of the time in bed sleeping or in the bathroom vomiting and having diarrhea. He looked like he was on the verge of death. He had to be given constant infusions of platelets and red blood cells. His blood counts were taken, and his white count was down to next to nothing. This was the most dangerous time as his body was extremely vulnerable to infection. He had his own nurse at all times, and he was not allowed to leave the transplant unit at all. He was allowed visitors, but was so sick that he really didn’t remember much. After about 2 or 3 days past the high dose chemo, his own stem cells that had been saved pre-chemo were transfused back into his body in hopes that they would start growing his own white, red, and platelet cells again. He was also given injections of Neupogen (for white blood cells) and Epogen (for red blood cells) that would chemically stimulate the bone marrow to grow new cells.
It worked! The very next day after transfusing his saved stem cells, Mike’s blood counts started rising!! A few days later, when his white count was getting higher he was allowed to take walks out of his transplant unit. He was so excited, he had been so sick and had felt so trapped in the transplant unit. He was under the care of one of his very favorite doctors. She was so sweet, whenever she came to visit Mike and check on him, she would hold his hand. I know it made him feel better. The simple act of his doctor holding his hand was very comforting to him. She was from India and had a wonderful accent, which Mike loved to imitate! He made her laugh even though he was so sick. Finally, Mike was able to eat a little bit. A little soup and Jell-O was all he could manage, but it was a start. His white count was finally up enough so that he was allowed to go home!! We were so happy!! While at home, he was still not able to eat very much because the lining of his stomach and intestines had been severely affected by the chemo. He was only able to manage a little chicken soup or a little strawberry Jell-O. Some times he would like a little chocolate flavored Ensure as a treat (and for a quick vitamin supplement). At home, he still needed to get the injections of Neupogen and Epogen to stimulate his bone marrow to continue making more blood cells. Sometimes he had shots of Procrit. A nurse from NYU came to show us how to administer the shots. Twice a day, Mike needed a shot in his upper thigh. Sometimes he gave himself the shots, and sometimes I gave them to him. After a while, we both became very good at giving the shot, even though the syringe needle was quite intimidating. It was important to get the needle deeply under the skin in his upper thigh to make sure all of the medication would get in. It was very difficult for Mike to sleep at night, the medication made his bone marrow produce lots of new blood cells, but it was a very painful process. His large bones, like the femur and the spine would ache and he would wake up in excruciating pain. When I paged the doctor, he said this was normal; it was the medication making the bone marrow work very hard to produce more cells. This was one of the many things that were never mentioned to us when stem cell treatment was proposed. I was so angry that he had to be in so much pain.
After being so sick and in bed for so long in the hospital, Mike was not very steady on his feet. He sometimes needed help getting up from the couch, or he wobbled when he walked or tripped a lot. The doctor said exercise would improve his strength, so we took lots of walks around the block. On April 2, 1999, we celebrated his 32nd birthday at home, but he was so weak that it was difficult for him to open his presents. We took a little walk to a nearby corner restaurant, where he had Matzo ball soup for his birthday lunch, but it was still difficult for him to eat since his digestive system had taken such a beating from the chemo.
About three weeks after getting out of the hospital, Mike was noticeably better! He was staring to look and sound like his old self! His sense of humor was back and his memory was too. It was the best I had seen him since all of his brain tumor treatments started. We were so happy to finally beat the tumor! The clinical trial was for a double high dose chemo and stem cell transplant. So six weeks after his first treatment of high dose chemo, Mike was scheduled to go back to the hospital for the second round. We were both not looking forward to this. Mike dreaded the treatment, he did not want to have it again, but he said again, “I’ll do anything to stay here with you a little longer, Kath.” I felt so sad, he was doing so well, and I was worried about the high dose treatment again. It was so hard on him and on his body; it was so scary.
He was scheduled to have an MRI before the second round of high dose chemo. This would actually determine if a second treatment was necessary. If the tumor were still growing, then he would not have the second round of high dose chemo. The MRI showed no tumor growth and this cell growth test came back “cold”. We were thrilled! We thought, finally, a treatment is working! So six weeks later, we went back to the transplant unit again for another round of high dose Carboplatin, Etoposide and Thiotepa. It was so awful, and so debilitating to Mike. He was so sick and so weak. It was absolutely the saddest time for us. A complete repeat of the same treatment 6 weeks before, except this time we knew exactly how awful it would be.
After he was out of the hospital and came home, Mike did not “bounce back” as well as he did the first time. The high dose chemotherapy had really taken a toll on his body. He was very weak. He was completely bald, and his eyebrows and eyelashes and every hair on his body fell out, which made him feel very cold all the time. His skin was so delicate, and thin too. He was much, much weaker on his feet, and had to be hospitalized again for a few days due to the weakness.
He started to feel better in late May. Mike was adamant about returning to work. He was a lawyer at the stock brokerage firm Arnhold & S. Bleichroeder in New York. His office and his two bosses had been so wonderful about his illness; they sent a computer home for him to keep in touch with everyone via e-mail. Mike wanted to go to his job more than anything. He missed his friends at work, and he was sick of being sick. He wanted to put on his suit and go to the office like “normal” people do. His doctors said it was ok if he wanted to go – so, Mike went off to work. We would leave together in a cab (I was afraid of subway germs!) , then I would pick him up at the end of the day and we would go home together. He was so happy to be back at work! Even though he wasn’t able to do a lot of work, he loved the normalcy of going to work and being with his office mates.
In July, Mike was feeling so much better that we were actually able to travel out of NYC and take the train out to Long Island to visit his mom and dad. We had such a wonderful weekend. We went to the beach at Robert Moses State Park, and it was the first time all year that we were at the beach, out of New York City and enjoying the sunshine and fresh air. I took a lot of video of Mike on the beach. He looked so healthy and happy. In late July, Mike started having memory problems again and he got confused about things sometimes. I felt nervous and upset because I knew something was wrong. Mike’s body still had never recovered completely from the chemo, especially his digestive system. In the beginning of August, he needed to stay home from work to rest more. He was so tired, and he didn’t feel well. I had to put Depends on him, because sometimes he couldn’t make it to the bathroom in time. He developed a little cold that wouldn’t go away. We went to his oncologist for a follow-up visit, and he ordered a chest x-ray because of the cold. The x-ray came back clear. We had been going to the hospital for weekly blood counts (on an outpatient basis) to monitor his after- chemo recovery. On August 16, his white count was very low. Too low. On August 17th, he woke up with a fever; I paged the oncologist, who told me to take Mike to the ER immediately. Lots of tests were ordered and more x-rays. The source of the fever was found by a circular chest x-ray, ordered by the infectious disease specialist who had been brought in to consult on Mike’s case. He had PCP pneumonia. PCP Pneumonia does not show up on a normal chest x-ray. PCP pneumonia is an opportunistic disease that usually preys upon AIDS patients and those who have compromised immune systems like cancer patients who had undergone lots of chemotherapy. The doctors explained to us that since Mike had been taking the steroid Decadron for so long to control swelling in his brain from the tumor and surgery , that it contributed to lowering his resistance to infection. Also, all the high dose chemotherapy had severely affected his body’s ability to fight infection. He was put on an oxygen tube in his nose and on IV antibiotics immediately. The next day, Mike and I were due to travel to Georgetown University Medical Center to meet with a doctor about a new brain tumor treatment for Mike. We had run out of options at NYU. Since Mike was in the hospital with PCP Pneumonia, our oncologist advised us to keep the appointment in Washington anyway. My dad and I went to Washington DC and met Mike’s brother there. We all saw the doctor, and he looked at Mike’s latest MRI films, read his medical history file, and told us that Mike’s tumor was too big to be considered as part of Georgetown’s clinical trial. They were only considering tumors of less than a centimeter in diameter. Mike’s was at least 14 centimeters if not more. The doctor said Mike had a very aggressive tumor that would not respond to treatment. It was literally the first time a doctor told me how bad Mike’ brain cancer really was, and that he would not recover. My dad, Mike’s brother and I all just sort of looked at each other in disbelief, we were all very quiet. My dad and I traveled back to NYC by Amtrak train. When we got to the hospital, my mom was with Mike. He had been moved from his regular hospital bed to the step down unit, so he could be watched more closely by round the clock nursing care. He had a hard time eating and couldn’t keep anything down. He threw-up a little bit and some of it landed on my mom. He joked that it was every man’s dream to throw-up on his mother-in-law! This was the essence of Mike – making us all laugh under the worst of circumstances. He was wearing an oxygen tube in his nose. He said he felt “crappy”. He looked so sad, it was so sad. For the next few days, every time I saw Mike, he looked worse. He was transferred from the step down unit to intensive care. The doctors said his oxygen saturation level was low due to the PCP pneumonia, and to help his lungs heal, they wanted to put him on a ventilator for a couple of days. They explained that the ventilator would help him breathe by forcing air into his lungs. His lungs could rest and it would help them heal and fight the pneumonia. Mike also had a staph infection at the site of his double Hickman catheter in his chest. He was on several different antibiotics, the doctors kept switching them so the infection wouldn’t become resistant to the drugs. The doctors needed to intubate Mike in order for him to be on the ventilator, and he would be kept sedated because being on a ventilator is very uncomfortable. He would not be able to speak once he was intubated. The last words we said to each other before the procedure were, “I love you.” I didn’t realize that this would be the last time I would hear Mike’s voice.
He was moved from Intensive Care to the Critical Care Unit. Not only was he on the ventilator, but also he had a feeding tube, and lots of IV tubes for the multi-antibiotic treatment he was being given. Also, his neuro-oncologist ordered IV Tamoxifen as well. The doctors did not know if the tumor was growing, and at this point, they told me the PCP pneumonia was more deadly than the brain tumor. Mike was sedated while on the ventilator, but he could still hear my voice. He would squeeze my hand and would “thumb wrestle” with me. He was trying to make me feel like everything would be ok, we were “telling” each other that everything would be ok. He tried to open his eyes, but he couldn’t, he would wiggle his toes when I talked to him. That was the last day he responded to me. For the next few days, he continued to get weaker. The antibiotics were not working and the ventilator’s oxygen level had to be turned up higher. The doctors told me he had “sepsis” which is a full body infection of the blood, which spread to his organs. Sepsis is very difficult to treat since it is not a localized infection but is throughout the body. Mike was not getting better. His fever was very high, at times it was 105. The nurses used a special cooling blanket machine to keep his temperature lower.
The infectious disease specialist told me that I should sign a DNR (do not resuscitate order). This would release the doctors from taking any means necessary to keep Mike alive. They explained that they could potentially harm to him by doing CPR; this was not a case where he was going to get better. The pulmonary specialist told me that at this point we were no longer extending Mike’s life, we were prolonging his death by our efforts to keep him alive. The doctors wanted me to stop the feeding tube, to have the ventilator taken off. I couldn’t do it. Mike and I had unfortunately never had “the talk” about what to do if either of us got really sick. I did not know what his wishes were. I signed the DNR, but could not remove any of the life support. I finally realized that Mike was going to die when his neuro-oncologist told me that the PCP pneumonia infection did not respond to any of the antibiotics and Mike would not survive. He said it would be a matter of days.
On September 6th, I had just left the hospital at 11 pm and arrived at our apartment 3 blocks away, when the CCU nurse called me to say that Mike’s blood pressure was dropping. My sister and I literally ran back to the hospital. I held Mike’s hand and told him how much I loved him. On September 7th at 3:04am, Mike’s heart gave out, and he lost his very brave battle against brain cancer. I was holding his hand and I said, “I love you” over and over and over and over, I wanted that to be the last thing he heard. We lost our battle. Michael John Luparello was wonderful and loving and kind and brave – he was truly a gift from God.