1955 / Class of '07 / Stage 3 at diagnosis / Died 5-12-2007
Story by Partner Alan Facey, email@example.com
June 1989: Allanís then partner Neill, was diagnosed with HIV and his family Doctor recommended that Allan be tested as these were the days the disease was raging through the gay community with little known about transmission let alone treatment options.
July 1989: Allan was diagnosed with HIV in July 1989 and began what would be an 18 year journey with both HIV and other related health concerns. He was immediately put on a drug regime that involved more the 60 pills daily. His HIV and viral load stabilized; however, the side effects were what he considered worse then the disease. The drug regime treatment for the HIV remained consistent for the next several years.
October 1994: Allan began having a severe pain in his upper arm and was treated for Ė muscle strain and bone weakness. X-rays showed nothing but the pain persisted with pain treatments such as Tylenol 3 and physical therapy. The pain reached a point where Allan was no longer able to work and was placed on long-term disability by his employer.
February 1995: After much pressure, Allanís Doctor again ordered more X-rays and a mass was seen growing on the humorus bone in his right arm. The Doctor performed a biopsy and he determined that it was cancer and Allan would begin treatment on February 28th, 1995. While waiting for treatment to begin, Allanís arm actually broke where the tumor was identified. Allan immediately entered the hospital and began treatments of radiation and chemotherapy treating the lymphoma tumor. After obtaining Allanís medical records from 1995, the records never identified exactly what type of cancer Allan had but that it was being Ďtreated as lymphomaí.
The treatment was brutal on Allanís health. He lost all of his hair, his weight dropped to a little more then 90 pounds and most importantly, his HIV began ravaging his immune system. Up until the lymphoma treatments, Allanís HIV remained undetectable with his then current drug regime. The combination of the cancer treatment and the HIV was killing him. After six treatments Allan was given the grim news that he had six-months to live.
October 1995: At the suggestion of Allanís family Doctor, he began a new treatment for his HIV that involved protease inhibitors. Allan responded well to the new drug cocktail and resumed his final Ďlymphomaí treatment in November 1995.
February 1996: Although weakened by the cancer treatments, Allanís immune system began recovering and his HIV viral load decreasing to undetectable and he was declared cancer free at the end February. His was advised by his hematologist that at some point in time cancer would probably return and with a vengeance. Allan continued to see his hematologist every six months for the next couple of years and then did not even follow up after 1998 as he was feeling fine, with no major health problems with the exception of HIV which was being treated with the protease inhibitors.
December 2005: Allan felt a lump under his right nipple and immediately was sent for a mammogram. The mammogram should a slight mass about the size of a quarter. Day surgery was scheduled for December 12th to biopsy and / or remove the mass. It was just before Christmas when the lab advised us that the pathology on the mass turned up no cancer. We celebrated not only Christmas that year but also the negative pathology results that had us both so concerned.
September 2006: Allan began having some lower back pain on the right hand side the just would not go away. We originally thought it must be related to our new mattress and switched back to the old one. The lower back pain continued and a visit to his family Doctor suggested some type of lower back strain, such as a pulled muscle. He was prescribed some mild pain killers and an anti-inflammatory cream. He continued his daily routine however the pain did not seem to subside. In later September his Doctor ordered X-rays, blood work and some light physiotherapy. It was suggested that perhaps kidney stones were the culprit. All of the test results, including the X-rays showed everything to be normal and within acceptable ranges given Allanís HIV status.
November 2006: Although the lower back pain continued, we traveled to Ontario in October for Allanís motherís 80th birthday and also traveled in early November for a golf vacation in Palm Springs. It was in Palm Springs that the lower back pain severely increased to the point that he was unable to complete a round of golf or a single game of tennis. Upon our return to Canada and several Doctorís visits later, all test results still showed nothing. On November 28th, 2006 while sitting in our kitchen, Allan sneezed and felt something Ďbreakí in his rib cage. We immediately went to the emergency room, where chest X-rays indicated two fractured ribs and Ďunusualí lesions on his rib cage, his spine and down his right leg.
December 2006: Allan returned to his hematologist that he had seen in 1994 Ė 98 and was told that he would have to have a bone marrow test on his hip and a PET scan at the end of January 2007 to determine the nature of the lesions and hopefully the cause of the now severe and debilitating pain that Allan was experiencing all the time. After having the bone marrow biopsy done on December 18th we celebrated Christmas with Allanís mother and sister while we waited for the results. Allan was again placed on long term disability as he was no longer able to work or move freely without severe pain in his rib cage.
January 2007: Allanís pain continued to worsen throughout the month and pain management was becoming a major concern with our twice weekly visits to his family physician. On January 7th, 2007 the bone marrow biopsy results came back negative (which we both thought was great) however his hematologist warned that they would need to do a rib biopsy to determine the cause and source of the now constant agonizing pain which severely limited his movement and his quality of life. In late January the palliative home care team began visiting our home under the auspices of pain management as we were both in shock that the palliative team was assigned to the case. At the end of January, the pain was at a point where the home care team advised that a hospital stay would be required and Allan entered the hospital on January 30th to help with his pain management. His PET scan had been scheduled for February 2nd and a CAT scan on February 3rd. During the first few days in the hospital, Allanís pain ravaged out of control to the point that his Doctors actually sedated him to the point of a drug induced coma so that he could get some rest and relieve the pain.
February 2007: The PET scan showed Ďhot spotsí throughout his entire rib cage, his lower back and leg (similar to the abnormal lesions that showed up in the early X-rays). His surgeon performed the rib biopsy on February 3rd and we were advised on February 7th that he had stage 3 multiple Myeloma. The Doctors advised us that although the cancer was not curable it was treatable with a combination of chemotherapy (Velcade) and pain control medication including hydra-morphon, and a variety of pills and injections every four hours. He remained in the hospital throughout much of February and began Velcade treatments on an in-patient basis on February 12th. He was discharged from the hospital on February 22nd with the palliative home care nurses visiting our home on a daily basis.
March 2007: We had great difficulty controlling Allanís pain from home and he was readmitted to the hospital on March 2nd for what would be a 4 week time span. The day he was getting ready to enter the hospital he broke his left collar bone when turning on the shower to get ready to go to the hospital. His Doctors ordered 5 radiation treatments in order to help control the pain as well as the Velcade treatments on rotating 2 week schedules. At this time Allanís oxygen level began to drop below 90% and he was placed on oxygen around the clock. It was March 18th, 2007 that the Doctors finally told us that the long term prognosis was not good despite what we read about survival rates into the years with stage 3 multiple Myeloma. Allan decided to stop treatment and call his friends to the hospital to tell them the news. The Doctors had suggested that he had 6 to 8 months to live as long as he did not develop an opportunistic infection or catastrophic event. At the same time, his HIV viral load counts began to drop drastically as a result of the chemotherapy and radiation treatments. On March 30th Allan was discharged from the hospital for that last time as I told him that I would not send him back to the hospital regardless, that he would be out home for the duration of his illness.
April 2007: We called for his family, his mother and four sisters to visit us from Ontario for Easter and he struggled through the ten day visit with increased doses of pain medication, including fentynal which had to be injected every four hours. The home care nurses continued to visit daily, offering great support and guidance. Allan decided to start his chemotherapy treatment again to help with pain management. We now had oxygen in our house 24 hours a day as his oxygen levels often fell below 80% and he felt this was suffocating. He had 8 more Velcade treatments in April and twice weekly visits to his family Doctor who was increasing the pain medication at every visit.
May 2007: Allan turned 52 on May 6th with a small party of close friends and his little sister. He began treatment with Methadone on May 1st for pain control and the dosage was increased 4 times in the next 11 days. Our life centered around appointments with the cancer clinic and appointments with his family Doctor. On May 11th, we would go to the cancer clinic for chemo for what would be his last time. On May 11th the palliative home care Doctor increased Allanís Methadone to 25 milligrams four times daily (from 20 milligrams) and Allan said he felt Ďfunnyí or stoned all day. He woke up at 1:00 am and made his way to our living room. He told me he wanted a popsicle and that he would sit in his rocking chair as he found comfort in rocking. At 3:00 am he finally fell asleep and I sat up for the rest of the night with him. At 7:00 am his breathing became labored and I was unable to wake him up.
The palliative home care nurse came and examined him and suggested that he may have had too much medication in his system. He would not respond to any pain stimuli. The palliative home care Doctor advised me that he had a catastrophic event, probably a stoke and that all we could do was to make him comfortable. As I had promised he that he would not have to go back to the hospital, I called the ambulance to have him moved from his favorite rocking chair into our bedroom.
Throughout the day, he gasped for breath despite the oxygen, breathing every 60 seconds. Many friends arrived throughout the day as I advised that Allanís life was coming to an end. Each friend spent private time with him throughout the day and his favorite home care nurse Kristie stayed throughout the day.
With his dog El Toro by his side, I told him it was okay to go, and he passed away after a difficult 94 day struggle, Allan took his last breath at 4:35 pm at the age of 52.
I can state now after many months, Allan had the best care possible from every health care professional who came in contact with us during this time. Writing about this journey helps with the healing process as this most difficult of years comes to an end. I would like to say to anyone who reads to fight on, there is hope and find your strength from your family, friends and faith. Great strides have been made in the treatment of this disease and the clinical trials will produce new, better treatments for current and future people diagnosed with multiple Myeloma.
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