We made it back to Canada! Now another adventure begins for tony to get well
We tried quite a few times to return to Canada for more medical work. As many of you know, we could not return for L-A's planned mastectomy in March-April 2020, due to Covid shutdowns everywhere. So L-A had emergency surgery in Worcester, with follow-up radiation and herceptin injections until November 2020. She had further scans, mammograms and blood work every six months until July 2021. We were further delayed by waiting for our South African medical visas (which arrived very late), and postponed our December 2021 flight to Canada due to us catching Covid Omicron. We arrived on January 18, 2022, and were thankful for negative covid tests, a private quarantine, and that our OHIP was still valid due to an applied-for exemption for Canadian expat missionaries under a Canadian charity (similar to what the military receives).
All was set for a potential oncologist for L-A at Toronto's Sunnybrook hospital (following a referral visit to a Toronto walk-in doctor on February 16, 2022, and an upcoming call from triage staff and the secretary to Dr. R). Now that we are back in Canada, our regular GP in Ottawa, refuses to help us in Toronto for needed prescriptions, L-A's dad's doctor refuses us as well due to his workload, and we are working on the possibility of a third doctor who can just handle prescriptions. No walk-in doctor so far has been able to handle an accessible parking permit renewal for L-A, and Service Ontario refuses to issue a new one, since they require that a doctor sign off on it as a brand new permit. Doctors are not seeing their patients in person, even for paperwork. This could be a real problem in getting even a short face to face appointment. But we trust that each hurdle will work out as it should, and that L-A will have her 6 month check up, even if it's 5-6 months late. On to Tony, who is much more urgent right now...
All was set for a potential oncologist for L-A at Toronto's Sunnybrook hospital (following a referral visit to a Toronto walk-in doctor on February 16, 2022, and an upcoming call from triage staff and the secretary to Dr. R). Now that we are back in Canada, our regular GP in Ottawa, refuses to help us in Toronto for needed prescriptions, L-A's dad's doctor refuses us as well due to his workload, and we are working on the possibility of a third doctor who can just handle prescriptions. No walk-in doctor so far has been able to handle an accessible parking permit renewal for L-A, and Service Ontario refuses to issue a new one, since they require that a doctor sign off on it as a brand new permit. Doctors are not seeing their patients in person, even for paperwork. This could be a real problem in getting even a short face to face appointment. But we trust that each hurdle will work out as it should, and that L-A will have her 6 month check up, even if it's 5-6 months late. On to Tony, who is much more urgent right now...
Tony was originally diagnosed with TB while in South Africa, due to a pleural effusion. He took medications for over a year, with little change. He still needed three different drainings. Finally, our South African GP had a CT scan done and they discovered an egg-shaped tumour in the lining sac of his left lung. It seemed to be near his heart. Dr vD had suggested booking a Cape Town thoracic surgeon and if necessary L-A's oncologist, Hanlie du Toit. However, staying in SA for another lengthy cancer journey wasn't something he wanted to do. We were still in debt from the last one (mostly for post cancer treatments, and the TB journey). Instead, Tony had our doctor write up a report and recommendation for a doctor or team to follow up on Tony in Canada for both the prostate cancer and the suspected mesothelioma (cancer of the lung lining). This diagnosis has not been confirmed, but will be soon.
While we were still waiting on our visas so we could leave SA legally, L-A researched Toronto hospitals for Tony's suspected condition. Toronto General and Princess Margaret Hospital turned up as the best Mesothelioma clinic in all of Canada. Since we would be based in Etobicoke to care for L-A's dad, this would be doable. L-A found a thoracic surgeon specialist on the TGH site, and reached out to him. She didn't receive a reply, and assumed that she could take Tony to the ER with a CT scan and report.
However, the week we finally arrived, Dr dP's secretary reached out to us, and Tony phoned her. The process couldn't start until Tony had a local referral faxed along with the South African referral and documents. Then they would begin with a chest X-ray, blood work, PET scan, and more before Tony is seen. Hopefully, there will be progress on a good treatment!
February 7, 2022 - (Tony) Walk in doctor referral to TGH Dr dP via St. Andrew's Clinic.
(Tony) - tried to get our Ottawa GP to help with at least prescriptions. After ten days thinking about it, Dr. E said basically no. If you're in Toronto, get a Toronto doctor. He didn't know about L-A's cancer journey, let alone Tony's condition.
(Tony) - reached out to a local doctor's office - Dr. L, who called back after hearing our story. He would be willing to just handle prescriptions and tele-visits until we return to Ottawa.
February 16, 2022 - (L-A) Walk in doctor referral to Sunnybrook Odette Cancer Care Centre. She did a telephone visit with L-A asking about her story. She was shocked that L-A was without a GP, with having a cancer background.
February 16, 2022 - Chest X-ray at an Etobicoke X-ray lab. Sure enough, a pleural effusion, as show in the main photo above. Those were from two of the earlier effusions. Tony was not allowed to take a picture of this recent scan. Oh the differences between SA and Ontario. But he got a good eye-ful.
February 22, 2022 - Pulmonary tests at TGH (early appointment!) In Tony's words: "TGH is Canada's #1 hospital and it showed. Most hospitals are confusing to navigate, but not TGH. I waited about 15 minutes before being called in by a pleasant and efficient Chinese nurse. She had a machine for measuring lung performance with a mouthpiece pointed towards me. She took me through a series of tests involving sucking air from the mouthpiece, and then blowing as hard and long as I could. The most umpleasant were when she cut off the mouthpiece air flow and asked me to pant in and out. Every blow and suck was stored and displayed on her screen. At the end I asked her how had I done, and she said about average - which was a lot better than I expected."
February 24, 2022- PET Scan at Princess Margaret Hospital. Tony arrived an hour early for the scan, in order to not miss it. He was injected with radioactive sugar, and then waited an hour for it to disperse through his body. His PET scan only took 12 minutes (L-A's had taken longer), and he was put in position with his arms up. Unfortunately the technician allowed Tony to see the scan, but she wasn't allowed to comment on it. It was still processing anyway. If it's urgent, then we are sure that Dr. dP will accelerate the timing. However, Tony received an email with the chest x-ray report and it noted that there were some markers consistent with mesothelioma. Perhaps they knew what they were looking for, since to our untrained eye, the scan looked similar to the three earlier pleural effusions in South Africa. So we will play the waiting game.
Meanwhile, a new potential doctor gave us both prescriptions to continue what we have been taking in South Africa - with some big changes for Tony. She took Tony OFF Tramacet and Celebrex and replaced them with ordinary 500 mg of Tylenol. We are amazed. How can he function on that?? Tony is trying a 'wait and see' game to see how it works. However, the prescription is only for ONE month, including L-A's thyroxine medication, which she has been on since 1989. We were to receive a blood test requisition form (through the next door pharmacist), but she forgot. Sigh. We miss our SA doctors, but need to listen to the new Ontario ones. Maybe there is a gem or two we are to meet...
February 28, 2022 - Tony's wait and see plan for his anti-inflammatories has been difficult. L-A suggested keeping the Tramacet for heavy days when he takes Steve to doctor appointments and the like. She also suggested that he take Tylenol Ones with codeine to help manage withdrawal. Meanwhile Tony's lungs are filling up again. He called Dr. dP's secretary, who suggested that Tony contact the walk-in clinic who sent the fax referral to TGH and ordered his chest x-ray. This may or may not require an overnight hospital stay, so we have to arrange the timing carefully to not conflict with Steve's needs.
March 9, 2022 - Perfusion lung scan at TGH and CT Scan at Princess Margaret Hospital: Tony had a few hours in between these two scans, so he has come to know the area and the different sections of the hospital. He was told to get an access number to be able to see his scans and reports via the UHN (University Health Network).
March 10, 2022 - L-A had been fighting a UTI for five days, and finally succumbed to call our temporary doctor. This doctor is very careful and does not prescribe medication without reason. However, she scolded L-A for waiting so long, since it could develop into a more serious infection. We were already waiting to go to a lab for blood tests (to check for thyroid levels) and she said she would email the requisition so both can be checked at the same time. A medication would be prescribed just in case at the pharmacy beside the doctor's office, although it may need to be adjusted. She asked for us to check in again on Monday (March 14th).
March 16, 2022 - Tony was advised by Dr. dP's secretary that he contact our walk-in doctor for a requisition to have a pleural sac draining procedure. He took this up to the Etobicoke General Hospital. They decided to delay that procedure after having another x-ray, ECG and blood work. They wanted him to followup with an ultrasound of his lungs and pleural space before they do the procedure. Later, that appointment was confirmed as March 30th.
March 16, 2022 - L-A still had the bladder infection which continued to become more uncomfortable. The medication had run out and we played telephone tag from March 15 - 17. We were told that the bladder specimen had failed and the test needed to be done again (we relayed the difficulties of obtaining samples). Another round of meds were sent to the pharmacy, and L-A began to doubt the instructions, since online sites for this medication said that it is usually for a three day duration, not one week. So how many meds to take in one day?
March 19, 2022 - L-A still struggled with the bladder infection, with increasingly high fever, chills and pain. Dull pain in the tummy, nausea and sharp pain in the abdomen were making L-A quite ill. Dr. L suggested that L-A go to the ER in the local hospital. Circumstances prevented L-A going, including the erratic PSW schedule and not leaving L-A's dad alone. Eventually L-A went on March 21st.
March 21, 2022 - Tony dropped L-A off at the Etobicoke General Hospital ER door and checked in by phone every half hour. The doctor was kind and no-nonsense. He didn't want to take Dr. Lal's diagnosis, but wanted to start from scratch. Blood work was done and like the previous visit at Dynacare Lab across the street, there was a difficulty getting a vein. Eventually the nurse had to take blood from L-A's hand, using the butterfly cathether that techs often have to use on L-A. This is the reason why L-A had to have a port for chemotherapy!! It was even harder to get a urine sample, and L-A had to try multiple times. Finally, a tiny sample was given only by using a female urinal (that was porous, so it wasn't helpful). Next time, L-A will ask for a bedpan! The nurses were confused and again asked for more samples but it wasn't possible. L-A prayed. The tech was able to do the analysis using that small amount of urine! It took extra time though. Finally, the doctor saw L-A and prescribed another drug meant for adult females who have very stubborn bladder infections. This one was definitely stubborn. It was a powder and was one dose, meant to be dissolved in water or juice. (L-A had it the next day dissolved in cranberry juice). The doctor also shared that the previous test did NOT fail, but it was inconclusive. This one was more accurate. L-A was advised if this new prescription did not help the infection to go away, that she should return and see him. He handed L-A some lab work paperwork to drop off to Dr. L, which Tony did when he picked up the prescription next door. L-A began to improve after a few days, but still needs cranberry juice.
March 24, 2022 - Tony's appt with Dr. dP, thoracic surgeon, mesothelioma specialist. Tony was asked to participate in a study and blood work to follow his journey of treatment at TGH. He agreed and was given an extensive questionnaire. Prior to this, L-A was led to research on the asbestos.com website, and found that many American officers and personnel on navy ships were exposed to asbestos if they were on these ships from 1930s - late 1970s. Tony was in this category! L-A searched to find if Canadian and British navies were also affected. They were. Then L-A found an advocacy group that helps mesothelioma victims (and other asbestos-related sufferers) and that there are trust funds dedicated for some compensation to these people and their families. Tony reached out to this group, and he was contacted by a Canadian lawyer group that specializes in this sort of thing. Tony found out the source of the asbestos on those ships - in the insulation surrounding the pipes. There was no way that it could be avoided! Even his ship, the Ark Royal, has other patients - at least three have claimed compensation. This was getting very close, yet, also gave us relief for answers. So some of this went into Tony's questionnaire, that this was not a rare form of the suspected disease, but rather there was a source.
Dr. de P was very kind with Tony, checking his heart and breathing the old fashioned way with a stethoscope. While he did review the scans, this doctor was very careful not to diagnose (or pair Tony with an oncologist) until he receives the results of a biopsy, which is yet to come. A special biopsy will be scheduled and Tony will be called when this absolutely essential test is available. We still remember how memorable L-A's core needle biopsy and diagnostic mammogram was, but this is far more complex. This is what the asbestos.com website says about the biopsy procedure that Tony could have: "Thoracoscopic biopsy has a remarkable track record of accurate pleural mesothelioma diagnoses because it allows doctors to see into the pleural space to evaluate cancer spread and retrieve multiple tissue samples. In a 2008 study of 45 malignant mesothelioma patients, researchers compared the accuracy of several biopsy techniques. Thoracoscopy was associated with the highest diagnostic accuracy, confirming a diagnosis in 95% of patients with the disease. A 2021 study published in Anticancer Research confirmed that a thoracoscopy remains the most accurate biopsy technique in diagnosing pleural mesothelioma."
March 25, 2022. We followed up with Sunnybrook Hospital (to start the process of L-A having monitoring for breast cancer resurgence). We checked if they even received the fax that was to be referred by our walk-in doctor back on February 16th. They never received it! Tony asked them to send it again, and resent the fax number for the referral to finally go to the right triage. More than five weeks wasted in the wait. Hopefully they will receive it this time (they DID receive it, according to a phone call to confirm on April 6th).
March 30, 2022 - Tony's ultrasound at Etobicoke General Hospital: This was more than an ultrasound! Tony also received the draining procedure, although it was done differently than it was in Worcester, with much less fluid. It was more comfortable with Tony leaning forward against a pillow. They were as gentle as they could be. We aren't sure whether the test results of the fluid were sent to the referring doctor (our walk-in) or to Dr. dP at Toronto General.
April 4, 2022 - Tony had a phone appointment with the thoracic team at TGH. He was informed on what to expect for the video-assisted biopsy procedure. He will be under general anesthetic, while they make a 1 cm hole in his chest in order to insert the camera and the biopsy needles. The procedure will be at 8 am May 4th.
April 7, 2022 - Tony asked for a referral to an eye surgeon that was recommended to finish work on his left eye. Nearly a year ago, Tony had retina re-attachment surgery which required oil to be piped into his eye to make the retina pliable. Now the oil needs to be drained. It took two times to check on the progress of this fax (requested last week). Tony also was a go-between between two doctors and Etobicoke General to find out if the pleural fluid was malignant or benign. If malignant, it would be related to the tumour (the last three times Tony was drained, it was benign). L-A had also applied to asbestos.com for a mesothelioma guide for Tony. It arrived, and we read it with interest. Apparently there are different kinds of mesothelioma tumours. One of them is benign! No wonder Dr. dP is careful to have that biopsy.
April 12, 2022 - L-A finally is being seen by an oncologist at Sunnybrook Breast Health Centre (rather than Odette Cancer Care). She also has a different doctor than requested, but that's fine. She will see Dr. Andrea Eisen early the morning of April 25th, and has permission to bring Tony and her dad. L-A plans to also ask Dr. Eisen if she will sign her accessible parking permit renewal form, since she will see her in person. Finally, face to face with a doctor (that isn't the ER doctor). Meanwhile, L-A has been taken OFF Celebrex and even the Muprocin antibiotic ointment used for skin irritations. It appears that these fill-in doctors are EXTREMELY cautious on medications that were completely fine in SA. Oh well. Dr. L did order a mammogram for L-A, and insisted that he be the one to order it, not the oncologist.
April 25, 2022 - L-A at Sunnybrook Breast Health Centre: L-A was guided in by porter Steve to the Breast Cancer ward on the 6th floor of the main building. It was confusing there, but the reception staff, and most nurses were helpful. While Dr. Amanda Roberts was the doctor we requested (based on info from a friend), she is actually a surgeon, so her services aren't needed. She told L-A that she does not remove ports. That is done by one of the radiologists. The oncologist that will monitor L-A is Dr. Andrea Eisen, who is very patient and extremely capable. She has a strong interest in breast cancer resurgence and the DNA of cancer warriors and survivors. There had been confusion on how they were to help me, but after gratefully reading L-A's medical history document (prepared by L-A) of the cancer journey and all the co-morbities, they had more of an idea of how to proceed. Dr E also suggested L-A try Adjuvant Zoledronic Acid injections every six months for 3-5 years. The side effects may include low calcium in the blood, and issues with your teeth. So we need a dentist's ok on this drug. We set up an appointment with a brand new dentist, Dr. Wesley Mah, at Cloverdale Dental Clinic.
Dr A also suggested a port removal surgery (upcoming time TBA) and a referral to the Lymphedema Clinic at the Odette Cancer Centre. Meanwhile, Richmond Gardens x-ray clinic called, saying they needed L-A to return to have a follow-up ultrasound to see more information on her right breast.
April 26, 2022 - L-A returned to Richmond Gardens for the ultrasound, and they tried to get the info/scan from the memory stick Tony bought in South Africa. They couldn't retrieve it in Sunnybrook, and they weren't interested in the earlier scans in Sunnybrook. Just after the scan, Dr. Lindholm called L-A about ordering an ultrasound to follow-up the recent mammogram. They had a chuckle that it was already done. Meanwhile, Tony's prep nurse, Leslie, from Toronto General Hospital, called with various instructions. No Aleve or vitamins for 7 days before the biopsy, but can take Tylenol. Shower in the morning before he leaves home, and to wear clean clothes. No ring. Bring a bag for glasses, dental plate and phone. Expect to go home 1 - 2 pm, where he would be picked up by our connect group leader. By the time the call was over, L-A was tired of waiting for Tony and had started preparing the breakfast, with grunts and groans. Steve had fallen into TIA 18. This was the first since 15 April, 10 days ago! We let him sleep it off, but then he did have his breakfast. An hour later an anesthetist called and told me it would be a semi - general anaesthetic. I would be very drowsy, but wake-able. The drugs they would have given Tony would make him "feel good," but with reduced judgement facility. So he must not drive or make financial decisions for 24 hours. So now Tony now knew the real reason to have a ride from a trusted person.
April 27, 2022 - Tony took L-A's dad to his doctor for his regular 3 month check-up. He had a list of Steve's current pills, and the TIA history, plus comments on his increasing incontinence and 'confusion,' which he readily admitted to when the doctor asked him how he was. The TIA history was a worry, but Dr J thought there may be other explanations, such as seizures. He listened to his lungs and measured his blood pressure. Many aspects of Steve's health are satisfactory. Nevertheless, Dr J wanted more accurate diagnoses for the things that ail him, so he will set up appointments at Etobicoke General for an ECG, for neurological tests and a brain scan. We have a next appointment with him at 11:30 on June 1st.
April 28, 2022 - Dr. Lal called L-A, saying she was concerned about a small nodule near the nipple of L-A's right breast. L-A was already familiar with this 'cyst' as they called it in South Africa. The doctor wants a biopsy of the nodule, and L-A said ok. This doctor may want an earlier scan of the cyst to see if it has grown since it was noticed in 2020. On the same day, we received a call from a nurse at St Joseph's Hospital, asking for L-A to come in for blood work and an exam. The OTHER doctor, Dr. V Radivojevic, (who only faxed the breast cancer journey referral to Sunnybrook) arranged this, which was confusing to us. Was she trying to take L-A on as her doctor? Apparently Dr Lal and Dr Lindholm were doing the same. L-A asked the nurse to confirm this, since she had no idea that L-A has cancer care at Sunnybrook, not St. Joe's. We await the call for confirmation. The actual appointment for the exam is Wednesday, May 12th, with bloodwork at 11:45 am, and appointment at 1:15 pm by Dr. Zurawska. Both Tony and L-A are battling confusion on the perfect storm of our little family of three over medical issues. Everything is becoming blurred, with Tony and L-A as caregivers, but also patients themselves. Yes, prayer is definitely needed on this journey!
April 29, 2022 - L-A finally has her accessible parking permit, thanks to Tony going to Service Ontario with the form signed by Dr. Eisen. Thank you so much AE.
May 4, 2022 - Tony's special video-assisted biopsy day (TGH) at 8 am, with arranged pick up afterwards by Bob our CTF Toronto connect group leader.
May 6, 2022- Dental appt at Cloverdale Dental Clinic (L-A). L-A was assessed by an excellent dentist who is filling in for another on maternity leave. His name is Dr. Wesley Mah, and he is excellent. L-A's teeth were ok other than slightly loose lower teeth. Before receiving zoledronic acid infusions, L-A must receive dental care now. An appointment was made for a thorough cleaning to get rid of abscesses (were these missed by the basic cleanings in SA?), and another to treat two cavities.
May 10, 2022 - Consult with Dr. Zane Jackson to look at the "nodule" in L-A's right breast. He said he can't really tell by a visual exam, but by a stronger mammogram and ultrasound. He said the radiologist at EGH will get back to me for an appointment. The "nodule" may not be worth getting a biopsy. He is being careful in a different way. L-A asked about the scar indentation, and he advised L-A see a cosmetic surgeon, although he said if we go that route, L-A would need to have a flap of back fat also taken off. We see his point. We'll just keep it clean and put on Polysporin for now (Bactroban is not available OTC, and the family doctor refuses to prescribe it).
May 11, 2022 - L-A had a thorough and somewhat painful cleaning, but it was necessary.
While we were still waiting on our visas so we could leave SA legally, L-A researched Toronto hospitals for Tony's suspected condition. Toronto General and Princess Margaret Hospital turned up as the best Mesothelioma clinic in all of Canada. Since we would be based in Etobicoke to care for L-A's dad, this would be doable. L-A found a thoracic surgeon specialist on the TGH site, and reached out to him. She didn't receive a reply, and assumed that she could take Tony to the ER with a CT scan and report.
However, the week we finally arrived, Dr dP's secretary reached out to us, and Tony phoned her. The process couldn't start until Tony had a local referral faxed along with the South African referral and documents. Then they would begin with a chest X-ray, blood work, PET scan, and more before Tony is seen. Hopefully, there will be progress on a good treatment!
February 7, 2022 - (Tony) Walk in doctor referral to TGH Dr dP via St. Andrew's Clinic.
(Tony) - tried to get our Ottawa GP to help with at least prescriptions. After ten days thinking about it, Dr. E said basically no. If you're in Toronto, get a Toronto doctor. He didn't know about L-A's cancer journey, let alone Tony's condition.
(Tony) - reached out to a local doctor's office - Dr. L, who called back after hearing our story. He would be willing to just handle prescriptions and tele-visits until we return to Ottawa.
February 16, 2022 - (L-A) Walk in doctor referral to Sunnybrook Odette Cancer Care Centre. She did a telephone visit with L-A asking about her story. She was shocked that L-A was without a GP, with having a cancer background.
February 16, 2022 - Chest X-ray at an Etobicoke X-ray lab. Sure enough, a pleural effusion, as show in the main photo above. Those were from two of the earlier effusions. Tony was not allowed to take a picture of this recent scan. Oh the differences between SA and Ontario. But he got a good eye-ful.
February 22, 2022 - Pulmonary tests at TGH (early appointment!) In Tony's words: "TGH is Canada's #1 hospital and it showed. Most hospitals are confusing to navigate, but not TGH. I waited about 15 minutes before being called in by a pleasant and efficient Chinese nurse. She had a machine for measuring lung performance with a mouthpiece pointed towards me. She took me through a series of tests involving sucking air from the mouthpiece, and then blowing as hard and long as I could. The most umpleasant were when she cut off the mouthpiece air flow and asked me to pant in and out. Every blow and suck was stored and displayed on her screen. At the end I asked her how had I done, and she said about average - which was a lot better than I expected."
February 24, 2022- PET Scan at Princess Margaret Hospital. Tony arrived an hour early for the scan, in order to not miss it. He was injected with radioactive sugar, and then waited an hour for it to disperse through his body. His PET scan only took 12 minutes (L-A's had taken longer), and he was put in position with his arms up. Unfortunately the technician allowed Tony to see the scan, but she wasn't allowed to comment on it. It was still processing anyway. If it's urgent, then we are sure that Dr. dP will accelerate the timing. However, Tony received an email with the chest x-ray report and it noted that there were some markers consistent with mesothelioma. Perhaps they knew what they were looking for, since to our untrained eye, the scan looked similar to the three earlier pleural effusions in South Africa. So we will play the waiting game.
Meanwhile, a new potential doctor gave us both prescriptions to continue what we have been taking in South Africa - with some big changes for Tony. She took Tony OFF Tramacet and Celebrex and replaced them with ordinary 500 mg of Tylenol. We are amazed. How can he function on that?? Tony is trying a 'wait and see' game to see how it works. However, the prescription is only for ONE month, including L-A's thyroxine medication, which she has been on since 1989. We were to receive a blood test requisition form (through the next door pharmacist), but she forgot. Sigh. We miss our SA doctors, but need to listen to the new Ontario ones. Maybe there is a gem or two we are to meet...
February 28, 2022 - Tony's wait and see plan for his anti-inflammatories has been difficult. L-A suggested keeping the Tramacet for heavy days when he takes Steve to doctor appointments and the like. She also suggested that he take Tylenol Ones with codeine to help manage withdrawal. Meanwhile Tony's lungs are filling up again. He called Dr. dP's secretary, who suggested that Tony contact the walk-in clinic who sent the fax referral to TGH and ordered his chest x-ray. This may or may not require an overnight hospital stay, so we have to arrange the timing carefully to not conflict with Steve's needs.
March 9, 2022 - Perfusion lung scan at TGH and CT Scan at Princess Margaret Hospital: Tony had a few hours in between these two scans, so he has come to know the area and the different sections of the hospital. He was told to get an access number to be able to see his scans and reports via the UHN (University Health Network).
March 10, 2022 - L-A had been fighting a UTI for five days, and finally succumbed to call our temporary doctor. This doctor is very careful and does not prescribe medication without reason. However, she scolded L-A for waiting so long, since it could develop into a more serious infection. We were already waiting to go to a lab for blood tests (to check for thyroid levels) and she said she would email the requisition so both can be checked at the same time. A medication would be prescribed just in case at the pharmacy beside the doctor's office, although it may need to be adjusted. She asked for us to check in again on Monday (March 14th).
March 16, 2022 - Tony was advised by Dr. dP's secretary that he contact our walk-in doctor for a requisition to have a pleural sac draining procedure. He took this up to the Etobicoke General Hospital. They decided to delay that procedure after having another x-ray, ECG and blood work. They wanted him to followup with an ultrasound of his lungs and pleural space before they do the procedure. Later, that appointment was confirmed as March 30th.
March 16, 2022 - L-A still had the bladder infection which continued to become more uncomfortable. The medication had run out and we played telephone tag from March 15 - 17. We were told that the bladder specimen had failed and the test needed to be done again (we relayed the difficulties of obtaining samples). Another round of meds were sent to the pharmacy, and L-A began to doubt the instructions, since online sites for this medication said that it is usually for a three day duration, not one week. So how many meds to take in one day?
March 19, 2022 - L-A still struggled with the bladder infection, with increasingly high fever, chills and pain. Dull pain in the tummy, nausea and sharp pain in the abdomen were making L-A quite ill. Dr. L suggested that L-A go to the ER in the local hospital. Circumstances prevented L-A going, including the erratic PSW schedule and not leaving L-A's dad alone. Eventually L-A went on March 21st.
March 21, 2022 - Tony dropped L-A off at the Etobicoke General Hospital ER door and checked in by phone every half hour. The doctor was kind and no-nonsense. He didn't want to take Dr. Lal's diagnosis, but wanted to start from scratch. Blood work was done and like the previous visit at Dynacare Lab across the street, there was a difficulty getting a vein. Eventually the nurse had to take blood from L-A's hand, using the butterfly cathether that techs often have to use on L-A. This is the reason why L-A had to have a port for chemotherapy!! It was even harder to get a urine sample, and L-A had to try multiple times. Finally, a tiny sample was given only by using a female urinal (that was porous, so it wasn't helpful). Next time, L-A will ask for a bedpan! The nurses were confused and again asked for more samples but it wasn't possible. L-A prayed. The tech was able to do the analysis using that small amount of urine! It took extra time though. Finally, the doctor saw L-A and prescribed another drug meant for adult females who have very stubborn bladder infections. This one was definitely stubborn. It was a powder and was one dose, meant to be dissolved in water or juice. (L-A had it the next day dissolved in cranberry juice). The doctor also shared that the previous test did NOT fail, but it was inconclusive. This one was more accurate. L-A was advised if this new prescription did not help the infection to go away, that she should return and see him. He handed L-A some lab work paperwork to drop off to Dr. L, which Tony did when he picked up the prescription next door. L-A began to improve after a few days, but still needs cranberry juice.
March 24, 2022 - Tony's appt with Dr. dP, thoracic surgeon, mesothelioma specialist. Tony was asked to participate in a study and blood work to follow his journey of treatment at TGH. He agreed and was given an extensive questionnaire. Prior to this, L-A was led to research on the asbestos.com website, and found that many American officers and personnel on navy ships were exposed to asbestos if they were on these ships from 1930s - late 1970s. Tony was in this category! L-A searched to find if Canadian and British navies were also affected. They were. Then L-A found an advocacy group that helps mesothelioma victims (and other asbestos-related sufferers) and that there are trust funds dedicated for some compensation to these people and their families. Tony reached out to this group, and he was contacted by a Canadian lawyer group that specializes in this sort of thing. Tony found out the source of the asbestos on those ships - in the insulation surrounding the pipes. There was no way that it could be avoided! Even his ship, the Ark Royal, has other patients - at least three have claimed compensation. This was getting very close, yet, also gave us relief for answers. So some of this went into Tony's questionnaire, that this was not a rare form of the suspected disease, but rather there was a source.
Dr. de P was very kind with Tony, checking his heart and breathing the old fashioned way with a stethoscope. While he did review the scans, this doctor was very careful not to diagnose (or pair Tony with an oncologist) until he receives the results of a biopsy, which is yet to come. A special biopsy will be scheduled and Tony will be called when this absolutely essential test is available. We still remember how memorable L-A's core needle biopsy and diagnostic mammogram was, but this is far more complex. This is what the asbestos.com website says about the biopsy procedure that Tony could have: "Thoracoscopic biopsy has a remarkable track record of accurate pleural mesothelioma diagnoses because it allows doctors to see into the pleural space to evaluate cancer spread and retrieve multiple tissue samples. In a 2008 study of 45 malignant mesothelioma patients, researchers compared the accuracy of several biopsy techniques. Thoracoscopy was associated with the highest diagnostic accuracy, confirming a diagnosis in 95% of patients with the disease. A 2021 study published in Anticancer Research confirmed that a thoracoscopy remains the most accurate biopsy technique in diagnosing pleural mesothelioma."
March 25, 2022. We followed up with Sunnybrook Hospital (to start the process of L-A having monitoring for breast cancer resurgence). We checked if they even received the fax that was to be referred by our walk-in doctor back on February 16th. They never received it! Tony asked them to send it again, and resent the fax number for the referral to finally go to the right triage. More than five weeks wasted in the wait. Hopefully they will receive it this time (they DID receive it, according to a phone call to confirm on April 6th).
March 30, 2022 - Tony's ultrasound at Etobicoke General Hospital: This was more than an ultrasound! Tony also received the draining procedure, although it was done differently than it was in Worcester, with much less fluid. It was more comfortable with Tony leaning forward against a pillow. They were as gentle as they could be. We aren't sure whether the test results of the fluid were sent to the referring doctor (our walk-in) or to Dr. dP at Toronto General.
April 4, 2022 - Tony had a phone appointment with the thoracic team at TGH. He was informed on what to expect for the video-assisted biopsy procedure. He will be under general anesthetic, while they make a 1 cm hole in his chest in order to insert the camera and the biopsy needles. The procedure will be at 8 am May 4th.
April 7, 2022 - Tony asked for a referral to an eye surgeon that was recommended to finish work on his left eye. Nearly a year ago, Tony had retina re-attachment surgery which required oil to be piped into his eye to make the retina pliable. Now the oil needs to be drained. It took two times to check on the progress of this fax (requested last week). Tony also was a go-between between two doctors and Etobicoke General to find out if the pleural fluid was malignant or benign. If malignant, it would be related to the tumour (the last three times Tony was drained, it was benign). L-A had also applied to asbestos.com for a mesothelioma guide for Tony. It arrived, and we read it with interest. Apparently there are different kinds of mesothelioma tumours. One of them is benign! No wonder Dr. dP is careful to have that biopsy.
April 12, 2022 - L-A finally is being seen by an oncologist at Sunnybrook Breast Health Centre (rather than Odette Cancer Care). She also has a different doctor than requested, but that's fine. She will see Dr. Andrea Eisen early the morning of April 25th, and has permission to bring Tony and her dad. L-A plans to also ask Dr. Eisen if she will sign her accessible parking permit renewal form, since she will see her in person. Finally, face to face with a doctor (that isn't the ER doctor). Meanwhile, L-A has been taken OFF Celebrex and even the Muprocin antibiotic ointment used for skin irritations. It appears that these fill-in doctors are EXTREMELY cautious on medications that were completely fine in SA. Oh well. Dr. L did order a mammogram for L-A, and insisted that he be the one to order it, not the oncologist.
April 25, 2022 - L-A at Sunnybrook Breast Health Centre: L-A was guided in by porter Steve to the Breast Cancer ward on the 6th floor of the main building. It was confusing there, but the reception staff, and most nurses were helpful. While Dr. Amanda Roberts was the doctor we requested (based on info from a friend), she is actually a surgeon, so her services aren't needed. She told L-A that she does not remove ports. That is done by one of the radiologists. The oncologist that will monitor L-A is Dr. Andrea Eisen, who is very patient and extremely capable. She has a strong interest in breast cancer resurgence and the DNA of cancer warriors and survivors. There had been confusion on how they were to help me, but after gratefully reading L-A's medical history document (prepared by L-A) of the cancer journey and all the co-morbities, they had more of an idea of how to proceed. Dr E also suggested L-A try Adjuvant Zoledronic Acid injections every six months for 3-5 years. The side effects may include low calcium in the blood, and issues with your teeth. So we need a dentist's ok on this drug. We set up an appointment with a brand new dentist, Dr. Wesley Mah, at Cloverdale Dental Clinic.
Dr A also suggested a port removal surgery (upcoming time TBA) and a referral to the Lymphedema Clinic at the Odette Cancer Centre. Meanwhile, Richmond Gardens x-ray clinic called, saying they needed L-A to return to have a follow-up ultrasound to see more information on her right breast.
April 26, 2022 - L-A returned to Richmond Gardens for the ultrasound, and they tried to get the info/scan from the memory stick Tony bought in South Africa. They couldn't retrieve it in Sunnybrook, and they weren't interested in the earlier scans in Sunnybrook. Just after the scan, Dr. Lindholm called L-A about ordering an ultrasound to follow-up the recent mammogram. They had a chuckle that it was already done. Meanwhile, Tony's prep nurse, Leslie, from Toronto General Hospital, called with various instructions. No Aleve or vitamins for 7 days before the biopsy, but can take Tylenol. Shower in the morning before he leaves home, and to wear clean clothes. No ring. Bring a bag for glasses, dental plate and phone. Expect to go home 1 - 2 pm, where he would be picked up by our connect group leader. By the time the call was over, L-A was tired of waiting for Tony and had started preparing the breakfast, with grunts and groans. Steve had fallen into TIA 18. This was the first since 15 April, 10 days ago! We let him sleep it off, but then he did have his breakfast. An hour later an anesthetist called and told me it would be a semi - general anaesthetic. I would be very drowsy, but wake-able. The drugs they would have given Tony would make him "feel good," but with reduced judgement facility. So he must not drive or make financial decisions for 24 hours. So now Tony now knew the real reason to have a ride from a trusted person.
April 27, 2022 - Tony took L-A's dad to his doctor for his regular 3 month check-up. He had a list of Steve's current pills, and the TIA history, plus comments on his increasing incontinence and 'confusion,' which he readily admitted to when the doctor asked him how he was. The TIA history was a worry, but Dr J thought there may be other explanations, such as seizures. He listened to his lungs and measured his blood pressure. Many aspects of Steve's health are satisfactory. Nevertheless, Dr J wanted more accurate diagnoses for the things that ail him, so he will set up appointments at Etobicoke General for an ECG, for neurological tests and a brain scan. We have a next appointment with him at 11:30 on June 1st.
April 28, 2022 - Dr. Lal called L-A, saying she was concerned about a small nodule near the nipple of L-A's right breast. L-A was already familiar with this 'cyst' as they called it in South Africa. The doctor wants a biopsy of the nodule, and L-A said ok. This doctor may want an earlier scan of the cyst to see if it has grown since it was noticed in 2020. On the same day, we received a call from a nurse at St Joseph's Hospital, asking for L-A to come in for blood work and an exam. The OTHER doctor, Dr. V Radivojevic, (who only faxed the breast cancer journey referral to Sunnybrook) arranged this, which was confusing to us. Was she trying to take L-A on as her doctor? Apparently Dr Lal and Dr Lindholm were doing the same. L-A asked the nurse to confirm this, since she had no idea that L-A has cancer care at Sunnybrook, not St. Joe's. We await the call for confirmation. The actual appointment for the exam is Wednesday, May 12th, with bloodwork at 11:45 am, and appointment at 1:15 pm by Dr. Zurawska. Both Tony and L-A are battling confusion on the perfect storm of our little family of three over medical issues. Everything is becoming blurred, with Tony and L-A as caregivers, but also patients themselves. Yes, prayer is definitely needed on this journey!
April 29, 2022 - L-A finally has her accessible parking permit, thanks to Tony going to Service Ontario with the form signed by Dr. Eisen. Thank you so much AE.
May 4, 2022 - Tony's special video-assisted biopsy day (TGH) at 8 am, with arranged pick up afterwards by Bob our CTF Toronto connect group leader.
May 6, 2022- Dental appt at Cloverdale Dental Clinic (L-A). L-A was assessed by an excellent dentist who is filling in for another on maternity leave. His name is Dr. Wesley Mah, and he is excellent. L-A's teeth were ok other than slightly loose lower teeth. Before receiving zoledronic acid infusions, L-A must receive dental care now. An appointment was made for a thorough cleaning to get rid of abscesses (were these missed by the basic cleanings in SA?), and another to treat two cavities.
May 10, 2022 - Consult with Dr. Zane Jackson to look at the "nodule" in L-A's right breast. He said he can't really tell by a visual exam, but by a stronger mammogram and ultrasound. He said the radiologist at EGH will get back to me for an appointment. The "nodule" may not be worth getting a biopsy. He is being careful in a different way. L-A asked about the scar indentation, and he advised L-A see a cosmetic surgeon, although he said if we go that route, L-A would need to have a flap of back fat also taken off. We see his point. We'll just keep it clean and put on Polysporin for now (Bactroban is not available OTC, and the family doctor refuses to prescribe it).
May 11, 2022 - L-A had a thorough and somewhat painful cleaning, but it was necessary.
Potential appointment: [May 12, 2022 - L-A at St Joseph's Hospital, blood work and exam. 11:45 am, then appointment in E Wing, 6th floor with Dr. Zuraska.] This lady is ALSO an oncologist. This is getting confusing. This appointment was never confirmed and did not happen.
May 12, 2022 - Tony had his stitches out from his biopsy done by our new family doctor. When Tony complained that the Canadian OTC iron supplements weren't strong enough and he needed a prescription for something stronger, he was given a requisition for a blood test (which he attempted to do in the afternoon, but was told by the lab assistants that he had to arrive having fasted). L-A was contacted by her oncologist's assistant at Sunnybrook. Dr. Eisen was confused on the request for the biopsy, so L-A shared the story, and noted that she just wanted Dr. Eisen informed, in case the "nodule" is cancer. It likely is benign.
We also discovered the preliminary lab report from Tony's biopsy. The tumour IS malignant, and is of the epithelial cells of the lung lining, as "classic" mesothelioma is. It also says the tumour has signs of "necrosis." If we read this right, the tumour may be dying in little bits OR the cells around it are. We are waiting on the chemistry of the tumour, so that Tony can be assigned an oncologist with the best treatment plan for him. His cancer journey is different than L-A's was, but the treatment may be similar. Tony is already on an anti-cancer diet (high in veggies, less red meat), although he still has some sugary treats (that may have to be stopped now!)
May 17, 2022 - Consultation on Tony's upcoming eye operation (finally having the oil taken from his left eye as a follow-up to last year's retina re-attachment surgery). Surgery to follow on May 30th.
May 17, 2022 - L-A has dental treatment for cavities. (Cha-ching! Yup. Nearly $500)
May 24, 2022 - L-A has another right breast ultrasound - this time at Etobicoke General Hospital in the Radiology Dept 1:30 pm (1 pm arrival). L-A had a wonderful experience being treated by ultrasound tech Rebecca. Due to having high quality equipment, she was able to lower the bed for L-A to get onto, and raise it for the ultrasound. She was gentle. Also other radiologists were able to copy files from earlier ultrasounds, PET/CT scan and mammograms from South Africa so there would be a history. Unfortunately there was no scan from June 2020, when L-A had a mammogram after discovering the "nodule" in the right breast.
May 26, 2022 - 2 pm Pre-op talk and blood work for L-A (port removal surgery) Odette Centre, Chemo area, Sunnybrook Hospital. Received phone call during the wait with questions about L-A's port and when it was inserted. If it's more than 5 years, the surgery would need to be rescheduled. The port was inserted late August 2019, so it's not yet three years old. Meanwhile, it was very convenient giving blood through the port rather than the arm. Last time doing that.
May 27, 2022, 9:30 am (9 am arrival) - L-A port removal surgery, radiology dept, Sunnybrook Hospital Ground Floor, wing M. Room 102. The port removal surgery was done very quickly by an Irish surgeon called Dr. Roche. He kept L-A talking through the procedure, and she was well anesthetized locally. The surgeon showed L-A the port, which looked like a little heart with a spout. Nurse Pat did an excellent job preparing L-A for the surgeon, and L-A was released early so she could get an almond milk latte at the hospital Second Cup cafe. The spot where the port is continues to be tender and L-A is very tired, but managing.
Tony had a pre-admission PCR covid test at Toronto Western hospital for his procedure on May 30th at 10:15 am) Tony's test negative (no covid detected), and he was able to pick up L-A at 11:30. Steve was fine when they arrived home.
May 30, 2022 - Tony - Oil removal surgery at Toronto Western Hospital, 11 am, with pick up after surgery by connect group leader Bob. Tony's eye surgery went well, with Dr. Mandelcom and his team. Tony decided to wear a tape over his eye, rather than have a 'pirate cone.' Tony has to avoid lifting and bending for a while, which is a challenge, since we need to get into our trunks to find our summer clothes! One thing at a time. Tony later logged into his UHN portal and found a beautiful write up account of the surgery. They believed it was done with excellence and that Tony should recover well.
L-A - Breast biopsy of nodule at Etobicoke General Hospital, 11:15 am, Pick up by cousins Brian and Cathy at 10 am, while one sits with Steve. L-A's experience in the XRay department was a good one, with Dr. Hughes taking the biopsy. Even though L-A was given a lot of local anesthetic, she still flinched when the needle biopsy stapled her. It was near the nipple, so that's a sensitive place. She was given a small ice pack to bring down any swelling. Meanwhile, the port incision was still sore, so extra Tylenol please.
May 31, 2022 - Tony: eye surgery follow-up at Toronto Western Hospital. Dr. Mandelcom approved Tony's eye, with good eye pressure. Tony is to take special drops for 30 days as a followup (just like in South Africa with the original operation). Tonight, Tony's eye is inflamed, but it's just responding to trauma.
June 1, 2022, 1:30 pm - Tony had his thoracic biopsy follow-up at Princess Margaret Hospital with Dr. de Perot, although the doctor was running an hour late. Tony chatted with an assistant doctor who answered many questions while he was waiting for his surgeon. Then Tony found that the diagnosis is confirmed. It is Epitheliod (Pleural) Mesothelioma. It's one of the more well-known asbestos cancers, so they have practice in treating it. Tony was told that he has three options: 1) chemo alone, 2) chemo and immunotherapy (which is recommended) and surgery alone, which in Tony's case would be to remove the whole left lung, but this is risky, because the tumour has become quite big. Perhaps the chemo and immunotherapy will shrink the tumour, and then other treatment can be added. DrdP told Tony that our trip in Calabogie is not a problem, and likely his chemo treatment would begin after our return. So the time will be a chemo-moon for Tony, just like our three day time seeing spring flowers on the West Coast of South Africa was L-A's chemo-moon. We have hope, despite the diagnosis. Tony should meet his new oncologist, Dr. Penny Bradbury in two weeks or so. She may have even more options. May she be a blessing to us, especially Tony.
June 2, 2022 - Steve appointment with Dr J. Will arrange for tests at Etobicoke General Hospital.
L-A appointment online with Odette Lymphedema Clinic (Sunnybrook) (Zoom class with nurse/lymphedema specialist Suzanne Sisson). L-A found this very informative to fill in gaps that weren't necessarily given when she learned under Este and Marzanne. Or perhaps some of the regional issues were a difference, like OHIP 75% coverage on compression garments (when the oncologist signs the form). The form is good for two years, so you can re-apply for a second set of compression garments every SIX MONTHS! L-A has had her velcro leg wraps for almost TWO years! The obesity issue is definitely in the way and needs to be managed to help the lymphedema as well as everything else. Polysporin is the antibiotic cream of choice, rather than Bactroban (not as good, but it still works). L-A also found a lymphedema fitter (called The Lymphedema Fitter) in Scarborough, who could be helpful. She was also given a special reminder to keep the affected limbs cleansed and moisturized, since super dry skin can cause split skin, and possibly infections. Another thing that will help is to connect with a dietician at Odette Cancer Care Centre, which doesn't need a doctor's signature.
June 9, 2022 - L-A appointment at Lymphedema Clinic, Odette Cancer Care, Clinic D (first floor), Sunnybrook Hospital. RN Ingrid White, 3 pm. L-A was examined by RN White, and measured. L-A was given pre-signed documents that will help apply for benefits that will partially refund part of new (non elastic) lymphedema sleeve/glove and bra. Unfortunately L-A was noted as not having primary lymphedema, which is not true. She was told that Sunnybrook does "not treat primary lymphedema" - not giving any advice on how to GET treated for primary lymphedema with help from OHIP (regarding compression garments, not MLD treatments, which are not covered). L-A may have to ask for advice from her chosen fitter (The Lymphedema Fitter in Scarborough). However, the unredeemed part of the garments (both those covered and those not covered) can be used as medical expense deductions when filing income tax). Nurse White DID however strongly encourage L-A to have her legs treated for primary lymphedema while also having treatment for her left arm/side.
Jun 10, 2022 - Tony called Dr. Lindholm for the results of his latest blood test. Did he need thyroxine? Iron shots? No! He needs B-12 shots! He became anemic of B12, just like L-A did as the breast cancer developed. Perhaps this is tied to the mesothelioma as well as the prostate cancer. He will come in for the injection on June 20th.
Jun 13, 2022 - Tony - consult with new oncologist, Dr. PB, at Princess Margaret Hospital. Tony met with Dr. PB, and her team. Due to Tony's age, immunotherapy was discarded as an option, and surgery alone is very risky due to the size of the tumour. Tony will undergo chemo to shrink the tumour, likely starting in July, although this has not be scheduled yet. Tony has the option to continue the chemo treatment in Ottawa, should we return before the end of the treatment cycles (the timing is still up in the air, due to Steve's situation).
Also, Tony - post eye operation consult at Toronto Western hospital - Tony had an excellent check up, and his eye is responding well to reading lines on eye doctor's boards! His eye also looks a lot less inflamed. It will take a while longer to complete the healing, but it looks very positive! Thank you, God!
Jun 14, 2022 - L-A's post breast biopsy appointment with Dr. Jackson at Etobicoke General Hospital. Dr. ZJ was delighted to report to L-A that the troublesome lump in L-A's right breast is benign! Yay! L-A will need to return for a followup ultrasound in early December to keep tabs on the lump/cyst.
Jun 15, 2022 - L-A - new fitting by Sandra Persaud at The Lymphedema Fitter in Scarborough. Sandra was welcoming, kind and felt safe. She wasn't trying to upsale like her previous fitter. Well, Sandra has experience of lymphedema warriors of all types - including L-A's. She took great care over the ADP form for the government, which as written by the surgeon and nurse, was strictly for the arm sleeve and vest only; not the leg wraps. So we left that as is, with two separate bills - one shared between the Ministry of Health and L-A, and the other completely L-A. The cost between the small portion of the sleeve and vest, with the leg wraps was just under $800, with a savings of approx. $700. The wraps are being made in Germany, so it will be a while before L-A gets that call. But thankfully, they will come. L-A will wait to sign up for a lymphedema therapist until AFTER the garments arrive (otherwise we'll have to go back to bandages, and that's a lot for Tony!!)
Jun 20, 2022 - Tony had B-12 shot by Dr. Lindholm
June 24,- July 1, 2022 - L-A and Tony had needed break in Calabogie timeshare. L-A's sister stayed with Steve for the week, while working from his home.
July 5, 2022 - Steve check up with Dr J. Put back on nighttime med, given test for a possible UTI. Tony checked and given a PSA test, needed to monitor the prostate cancer (what a kindness of God, he was told by a urologist it would take six months to wait for an appointment, even though he has prostate cancer! Thank you, God and also Dr. J! Tony was later told by Dr. J on August 25th that his PSA count was around 4, even better than it was in South Africa. This is another TKOG.
July 6, 2022 - L-A has second fitting for lymphedema compression garments (Lymphema Fitter in Scarborough). Tony and L-A were taught about how to apply the garments everyday, and for their care. We are to return for the second vest the following week or so. The vest is to be washed in a garment bag every second day. We'll need that second vest soon!
Tony asked the fitter (Sandra) if we can manage without a lymphedema therapist for now since we can't afford the more expensive Ontario therapists (Este was R500 - $45ish. Canadian ones would be over $100)
July 8, 2022 -Tony gets another B12 injection with Dr. L.
July 11, 2022 2 pm - L-A appointment with foot doctor re possible toenail operation (not covered under OHIP but necessary)
July 13, 2022 -Tony sees oncologist Dr PB at Princess Margaret Hospital, has blood work to establish a base line, and pre-treatment EKG to check heart. L-A had similar preparation for pre-chemo.
July 14, 2022 -Tony got another B12 injection with Dr. L (noon). L-A had an assessment by Dr. L towards a disability certificate. Unfortunately, he's not well versed on primary lymphedema (just secondary), so it's not going to be in the list, even though this is an issue in L-A's legs/feet. However, the osteo arthritis in the knees can be "proven" by an x-ray, and we have the spine MRI and report that shows the serious issue in L-A's back. This may be enough.
We needed to go to Service Ontario to renew L-A's health card (and driver's license). We went to two Service Ontario locations, when we were told at the first that we had to declare to SO that we arrived back in Canada. They cancelled our cards, although they were still being used by our respective hospitals and doctors with no complaint! After a 1.5 hour wait, all was amended, and we have slightly new numbers (the affix letters are different). We will have our cards in August.
July 15, 2022 -Tony started immunotherapy at Princess Margaret Hospital. We found that OHIP only began covering this treatment two days prior! The cost of one infusion is $1,400, so the med team asked four times Tony's info. Tony had no problem with the infusion in his right arm. He returns in roughly three weeks, but will have an oncology consult each time. The side effects that came up in the first two weeks were tiredness and weakness, so Tony has to manage his tasks to not do as much as he used to do.
July 18, 2022 -Tony got another B12 injection with Dr. L (noon).
July 19, 2022 - Tony - follow-up eye appointment at Toronto Western Hospital. All is good with his eye. Tony was asked to see an optometrist in one month to get a new prescription for his glasses.
July 23, 2022 - L-A had extensive x-rays on knees and hips to prove osteo-arthritis towards a disability certificate. It is always a challenge getting to this facility, along with standing in poses for the scans. The x-ray tech was very kind, although we had to do the poses over and over so that L-A would not have to return.
July 28, 2022 -Tony B12 injection with Dr. L (noon).
August 3, 2022 - 11 am - Tony - oncology consult at Princess Margaret Hospital. L-A suggested to ask Tony's oncologist for Celebrex, which would make him more able to make appointments and treatments. The old back and leg problem he had in South Africa has returned, making it very painful to walk, unless he has anti-inflammatories. Both Dr. L's insisted he be off Celebrex due to his age, and Dr L said she would order an x-ray at Richmond Gardens. When Tony went for the x-ray, it turns out that she forgot to send the requisition, so they will continue to reach out to Dr. L for a re-scheduled x-ray. Meanwhile, Dr P's Celebrex is half the strength of the South African stockpile, but manageable with Tylenol 1. Advil/Ibuprofen was also suggested as a substitute.
August 5, 2022 - 2 pm - Tony - Immunotherapy infusion at Princess Margaret Hospital. Tony shares in his own words: I was in the Systematic Therapy waiting area for 2 hours before being called to my bed, and nurse Amanda. When she had finished putting in my drip, I asked her how long today's session would take and she said 45 minutes. It was about 10 minutes later than I suddenly felt I was going to faint. I called the nearest nurse and she called Amanda and soon there were four of them around me. Then my middle back started giving major pain, radiating around my trunk. One of them told me this was temporary and that the pain would go as they gave me Benadryl, used to treat severe allergies. Her words were a great comfort because before that moment it crossed my mind I was breathing my last. I had experienced an allergic reaction to the infusion. They had stopped the infusion while the Benadryl did its work and the pain in my back subsided. A doctor arrived who directed operations. While the nurses measured my vitals evey few minutes, I rested for half an hour, and then they turned on the infusion drug. After 5 minutes the pain in my back returned, but at much lower level than before, so they again stopped the infusion drug and started up the Benadryl. This time it was sufficient, and the infusion drug was re-started until I had taken in the full dose. They weren't going to waste any of the precious liquid. I was assured that this would not affect my staying on the immunotherapy program, and they told me it happened to a small proportion of patients.
August 8, 2022 - 12:45 pm - L-A follow-up foot doctor appointment with Dr. Silver. L-A will be seeing him for another few months to get the nails growing the way they should.
August 11, 2022 - 11 am - Tony B12 injection with Dr. L
August 24, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital, Tony saw Dr Feng in place of Dr. B. He wasn't concerned about Tony's reaction to the immunotherapy.
August 25, 2022 - Steve was taken to Dr. J about a very stubborn cough and congestion that he's had since we arrived in Canada, but is getting worse. We were advised to first test him for covid (he was patient and it was negative), and he was given an antibiotic, stronger cough syrup and a requisition for an x-ray (unfortunately we couldn't take him on Friday due to Tony's immunotherapy, and the place is closed for the weekend.
August 26, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital. There were no problems, other than a deep sense of yuck in Tony's tummy. The nurse added the Benadryl to the infusion so there would be no allergic reaction.
August 29, 2022 - Steve chest xray Sherway Gardens. Turns out this was a minor but stubborn infection. After having serious antibiotics, he was given an additional cough syrup, since he is still mucussy.
September 6, 2022 - L-A foot doctor followup, which will still need yet another visit. Tony came as well to ask questions about getting new orthotix, which he really needs.
September 12, 2022 - 11 am Tony bloodwork @PMH
September 14, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
September 16, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
September 22, 2022 - 12 pm L-A - with gynecologist Dr. Patrick Liao (wonderful man). Referred by Dr L re hot flashes and needs a pap smear.
Had a pap smear but told can't prescribe hormones due to past of having breast cancer. Needs Andrea Eisen's permission (tumour wasn't responsive to hormones, so it may not make a difference. Grabbed his card, so Andrea Eisen's assistant can fax Dr. Liao the approval if needed.
September 23, 2022- 11 am Tony - CT Scan Toronto Western Radiology (Imaging) Dept. Was later told that his tumour has increased and is NOT shrinking. Tony decided to keep on the immunotherapy and have another CT scan in December to monitor the tumour's progress. If it's not better, Tony will go on chemo.
September 28, 2022- 11:00 am L-A dental appointment. We no longer have dentist approval over L-A's teeth regarding taking zoledronic acid infusions. Ryan said that he would examine L-A's teeth fully and research if any of the chemo blends damaged L-A's teeth.
October 3, 2022 - 11 am L-A foot doctor, 11:20 Tony foot doctor. L-A is to continue toenail work. Tony ordered new orthotix. Cost over $600.
October 4, 2022 11 am Tony bloodwork @PMH (possible)
October 5, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
October 7, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
(Mon) October 24, 2022 - L-A appointment with oncologist Dr. Eisen. M6 Breast Health Clinic H. 11 am. Dr E told L-A earlier that scans and bloodwork need to be done by the local doctor (which is different than South Africa, but understandable). It turns out that this was a misunderstanding. Had an excellent visit. L-A was told NO to taking ANY kind of hormone, since it still increases a risk of cancer resurgence, and she suggested a prescription that may help. She sent it to our local doctor.
Dr. E also was apprised of the additional dental treatment and the carefulness of this dentist. We discussed the biopsy in the right breast, and she asked if there will be any further scans (there is on December 5th). It turns out that the tissue that the South African radiologists thought was a cyst and Dr. Jackson said was benign. Dr E said that the lump is hyperplasia. It turns out that this lump's cells grow quickly (which is why its sore), and that there is a chance that these could turn cancerous. She is very suspicious over the lump. Ok, we will go with Dr. E's assessment. She said that she will follow up with a phone call appointment in January.
October 26, 2022 - 11 am L-A - complete scan (lots of x-rays and panarama xrays). Ryan told L-A that in order to take zoledronic acid, there are two more fillings ($200 each) and in order, there are four crowns to add over teeth that are patched together with dental stuff (the original teeth aren't solid). Each crown would be $1,310 or so, totalling to $5,600 for all the dental work. So due to our financial situation, we can: 1. do the dental work but not all the same day and carry the balance on L-A's credit card, 2. pull L-A's teeth out completely and get full dentures (L-A doesn't like that, since she sees Steve struggle with his). 3. Do the fillings, and don't take zoledronic acid. The dentist told her, that her life is more important than a few teeth. It left a lot for L-A to think about.
October 28, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
October 31, 2022 - 11 am L-A foot doctor, more toenail work. Tony is having his orthotix adjusted to be more comfortable.
(Wed) November 3, 2022 - L-A appointment with RN Ingrid White, M6 Breast Health Clinic H. 10:30 am. Followup on Lymphedema treatments. Ingrid measured L-A's arm and told her that she's gained weight. She has referred L-A to a dietician so that L-A can monitor her diet better (she's been monitoring Tony and Steve but not as much for herself). L-A also needs to have lymphedema treatments (can't afford), plus lotion all over her body, since dry skin and itching can cause infections. She also needs to drink more water to help clear toxicity and lymph issues.
November 16, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
November 18, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
November 21, 2022 - 12:40 pm. Dentist Ryan - two fillings (will advise we will do the crowns, but not all at once)
November 28, 2022 - 11:00 am L-A foot doctor
November 30, 2022 2 pm - Tony - oncology consult at Princess Margaret Hospital
December 2, 2022 - 2 pm - Tony - infusion at Princess Margaret Hospital
December 2, 2022 - 8:15 pm Tony CT scan - Princess Margaret Hospital
December 5, 2022 - L-A breast ultrasound at Etobicoke General Hospital.
December 12, 2022 - L-A two crowns inserted at Cloverdale Dental Group. Ryan gave 15% off due to L-A not having insurance. It was still $2,229.
December 14, 2022 - L-A breast ultrasound follow-up phone call appointment via Etobicoke General Hospital. - The growth is still benign! He didn't mention that the material is hyperplasmic.
December 28, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital. Tony was encouraged that the tumour is shrinking in some areas. Tony will still continue on immunotherapy. Meanwhile, Tony is getting more breathless and weak, with taste issues.
December 30, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital. Tony's infusion was moved a little later because he had a cold.
January 3, 2023 - L-A and Tony met with their new family doctor, Dr. A Makar, who we really like. She ordered tests for Tony's prostate (including an ultrasound), bloodwork for L-A (which opened up a new area of concern, a fatty liver). L-A was sent for an ultrasound and blood work. L-A reported to her Sunnybrook dietician about the fatty liver, which can be helped by a different diet. (In particular, since the liver issue is caused by obesity and likely fast food is the culprit). Going off butter will be a challenge.
January 16, 2023 - L-A two more dental crowns. No issues this time, other than a sore jaw. Ryan asked if L-A would tell him when/if she's taking zoledronic infusions.
January 17, 2023 - 3 pm L-A dental cleaning
January 19, 2023 phone appointment with Dr. E (L-A's oncologist). This appointment went well. L-A informed Dr E of the new family doctor, so she is on file. L-A said yes to zoledronic acid infusions, which will begin in February on a Tuesday.
January 21, 2023 - Tony - surgery to take tooth out (beyond a dentist's care due to the immunotherapy drugs)
January 24, 2023 L-A dietician appointment - to aid going on Mediterranean diet to get healthier, especially for fatty liver, but to get the weight down.
January 25, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital. Dr. B showed Tony a progression of x-rays from early 2023, and it showed that the immunotherapy is not really helping. It was decided that he would switch to chemo the following week.
January 29, 2023 L-A foot doctor appointment - it's surprising L-A still needs this, but it helps.
January 29, 2023 L-A bloodwork - ALT test and hepatitus check for liver (very high liver ensymes)
January 31, 2023 - 8:45 am - Tony Thoracic oncology - chemotherapy infusion, Princess Margaret Hospital.
January 31, 2023 - 2:30 pm - L-A dietician call
February 7, 2023 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
February 22, 2023 - 2 pm - Tony - oncology consult and tests at Princess Margaret Hospital. (Tony's 82nd birthday)
May 23, 2023 L-A dental cleaning and check up
June 29, 2023 11 am Lymphedema appointment with RN Ingrid White (could be moved if we go to Calabogie)
July 25, 2023 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
October 31, 2023 - L-A oncology consult, Dr E., Breast Health Centre, Sunnybrook Hospital
January 9, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
June 25, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
December 10, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
May 27, 2025 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
L-A - Manual Lymphatic Drainage / physiotherapy sessions start (to be scheduled) - cannot afford
May 12, 2022 - Tony had his stitches out from his biopsy done by our new family doctor. When Tony complained that the Canadian OTC iron supplements weren't strong enough and he needed a prescription for something stronger, he was given a requisition for a blood test (which he attempted to do in the afternoon, but was told by the lab assistants that he had to arrive having fasted). L-A was contacted by her oncologist's assistant at Sunnybrook. Dr. Eisen was confused on the request for the biopsy, so L-A shared the story, and noted that she just wanted Dr. Eisen informed, in case the "nodule" is cancer. It likely is benign.
We also discovered the preliminary lab report from Tony's biopsy. The tumour IS malignant, and is of the epithelial cells of the lung lining, as "classic" mesothelioma is. It also says the tumour has signs of "necrosis." If we read this right, the tumour may be dying in little bits OR the cells around it are. We are waiting on the chemistry of the tumour, so that Tony can be assigned an oncologist with the best treatment plan for him. His cancer journey is different than L-A's was, but the treatment may be similar. Tony is already on an anti-cancer diet (high in veggies, less red meat), although he still has some sugary treats (that may have to be stopped now!)
May 17, 2022 - Consultation on Tony's upcoming eye operation (finally having the oil taken from his left eye as a follow-up to last year's retina re-attachment surgery). Surgery to follow on May 30th.
May 17, 2022 - L-A has dental treatment for cavities. (Cha-ching! Yup. Nearly $500)
May 24, 2022 - L-A has another right breast ultrasound - this time at Etobicoke General Hospital in the Radiology Dept 1:30 pm (1 pm arrival). L-A had a wonderful experience being treated by ultrasound tech Rebecca. Due to having high quality equipment, she was able to lower the bed for L-A to get onto, and raise it for the ultrasound. She was gentle. Also other radiologists were able to copy files from earlier ultrasounds, PET/CT scan and mammograms from South Africa so there would be a history. Unfortunately there was no scan from June 2020, when L-A had a mammogram after discovering the "nodule" in the right breast.
May 26, 2022 - 2 pm Pre-op talk and blood work for L-A (port removal surgery) Odette Centre, Chemo area, Sunnybrook Hospital. Received phone call during the wait with questions about L-A's port and when it was inserted. If it's more than 5 years, the surgery would need to be rescheduled. The port was inserted late August 2019, so it's not yet three years old. Meanwhile, it was very convenient giving blood through the port rather than the arm. Last time doing that.
May 27, 2022, 9:30 am (9 am arrival) - L-A port removal surgery, radiology dept, Sunnybrook Hospital Ground Floor, wing M. Room 102. The port removal surgery was done very quickly by an Irish surgeon called Dr. Roche. He kept L-A talking through the procedure, and she was well anesthetized locally. The surgeon showed L-A the port, which looked like a little heart with a spout. Nurse Pat did an excellent job preparing L-A for the surgeon, and L-A was released early so she could get an almond milk latte at the hospital Second Cup cafe. The spot where the port is continues to be tender and L-A is very tired, but managing.
Tony had a pre-admission PCR covid test at Toronto Western hospital for his procedure on May 30th at 10:15 am) Tony's test negative (no covid detected), and he was able to pick up L-A at 11:30. Steve was fine when they arrived home.
May 30, 2022 - Tony - Oil removal surgery at Toronto Western Hospital, 11 am, with pick up after surgery by connect group leader Bob. Tony's eye surgery went well, with Dr. Mandelcom and his team. Tony decided to wear a tape over his eye, rather than have a 'pirate cone.' Tony has to avoid lifting and bending for a while, which is a challenge, since we need to get into our trunks to find our summer clothes! One thing at a time. Tony later logged into his UHN portal and found a beautiful write up account of the surgery. They believed it was done with excellence and that Tony should recover well.
L-A - Breast biopsy of nodule at Etobicoke General Hospital, 11:15 am, Pick up by cousins Brian and Cathy at 10 am, while one sits with Steve. L-A's experience in the XRay department was a good one, with Dr. Hughes taking the biopsy. Even though L-A was given a lot of local anesthetic, she still flinched when the needle biopsy stapled her. It was near the nipple, so that's a sensitive place. She was given a small ice pack to bring down any swelling. Meanwhile, the port incision was still sore, so extra Tylenol please.
May 31, 2022 - Tony: eye surgery follow-up at Toronto Western Hospital. Dr. Mandelcom approved Tony's eye, with good eye pressure. Tony is to take special drops for 30 days as a followup (just like in South Africa with the original operation). Tonight, Tony's eye is inflamed, but it's just responding to trauma.
June 1, 2022, 1:30 pm - Tony had his thoracic biopsy follow-up at Princess Margaret Hospital with Dr. de Perot, although the doctor was running an hour late. Tony chatted with an assistant doctor who answered many questions while he was waiting for his surgeon. Then Tony found that the diagnosis is confirmed. It is Epitheliod (Pleural) Mesothelioma. It's one of the more well-known asbestos cancers, so they have practice in treating it. Tony was told that he has three options: 1) chemo alone, 2) chemo and immunotherapy (which is recommended) and surgery alone, which in Tony's case would be to remove the whole left lung, but this is risky, because the tumour has become quite big. Perhaps the chemo and immunotherapy will shrink the tumour, and then other treatment can be added. DrdP told Tony that our trip in Calabogie is not a problem, and likely his chemo treatment would begin after our return. So the time will be a chemo-moon for Tony, just like our three day time seeing spring flowers on the West Coast of South Africa was L-A's chemo-moon. We have hope, despite the diagnosis. Tony should meet his new oncologist, Dr. Penny Bradbury in two weeks or so. She may have even more options. May she be a blessing to us, especially Tony.
June 2, 2022 - Steve appointment with Dr J. Will arrange for tests at Etobicoke General Hospital.
L-A appointment online with Odette Lymphedema Clinic (Sunnybrook) (Zoom class with nurse/lymphedema specialist Suzanne Sisson). L-A found this very informative to fill in gaps that weren't necessarily given when she learned under Este and Marzanne. Or perhaps some of the regional issues were a difference, like OHIP 75% coverage on compression garments (when the oncologist signs the form). The form is good for two years, so you can re-apply for a second set of compression garments every SIX MONTHS! L-A has had her velcro leg wraps for almost TWO years! The obesity issue is definitely in the way and needs to be managed to help the lymphedema as well as everything else. Polysporin is the antibiotic cream of choice, rather than Bactroban (not as good, but it still works). L-A also found a lymphedema fitter (called The Lymphedema Fitter) in Scarborough, who could be helpful. She was also given a special reminder to keep the affected limbs cleansed and moisturized, since super dry skin can cause split skin, and possibly infections. Another thing that will help is to connect with a dietician at Odette Cancer Care Centre, which doesn't need a doctor's signature.
June 9, 2022 - L-A appointment at Lymphedema Clinic, Odette Cancer Care, Clinic D (first floor), Sunnybrook Hospital. RN Ingrid White, 3 pm. L-A was examined by RN White, and measured. L-A was given pre-signed documents that will help apply for benefits that will partially refund part of new (non elastic) lymphedema sleeve/glove and bra. Unfortunately L-A was noted as not having primary lymphedema, which is not true. She was told that Sunnybrook does "not treat primary lymphedema" - not giving any advice on how to GET treated for primary lymphedema with help from OHIP (regarding compression garments, not MLD treatments, which are not covered). L-A may have to ask for advice from her chosen fitter (The Lymphedema Fitter in Scarborough). However, the unredeemed part of the garments (both those covered and those not covered) can be used as medical expense deductions when filing income tax). Nurse White DID however strongly encourage L-A to have her legs treated for primary lymphedema while also having treatment for her left arm/side.
Jun 10, 2022 - Tony called Dr. Lindholm for the results of his latest blood test. Did he need thyroxine? Iron shots? No! He needs B-12 shots! He became anemic of B12, just like L-A did as the breast cancer developed. Perhaps this is tied to the mesothelioma as well as the prostate cancer. He will come in for the injection on June 20th.
Jun 13, 2022 - Tony - consult with new oncologist, Dr. PB, at Princess Margaret Hospital. Tony met with Dr. PB, and her team. Due to Tony's age, immunotherapy was discarded as an option, and surgery alone is very risky due to the size of the tumour. Tony will undergo chemo to shrink the tumour, likely starting in July, although this has not be scheduled yet. Tony has the option to continue the chemo treatment in Ottawa, should we return before the end of the treatment cycles (the timing is still up in the air, due to Steve's situation).
Also, Tony - post eye operation consult at Toronto Western hospital - Tony had an excellent check up, and his eye is responding well to reading lines on eye doctor's boards! His eye also looks a lot less inflamed. It will take a while longer to complete the healing, but it looks very positive! Thank you, God!
Jun 14, 2022 - L-A's post breast biopsy appointment with Dr. Jackson at Etobicoke General Hospital. Dr. ZJ was delighted to report to L-A that the troublesome lump in L-A's right breast is benign! Yay! L-A will need to return for a followup ultrasound in early December to keep tabs on the lump/cyst.
Jun 15, 2022 - L-A - new fitting by Sandra Persaud at The Lymphedema Fitter in Scarborough. Sandra was welcoming, kind and felt safe. She wasn't trying to upsale like her previous fitter. Well, Sandra has experience of lymphedema warriors of all types - including L-A's. She took great care over the ADP form for the government, which as written by the surgeon and nurse, was strictly for the arm sleeve and vest only; not the leg wraps. So we left that as is, with two separate bills - one shared between the Ministry of Health and L-A, and the other completely L-A. The cost between the small portion of the sleeve and vest, with the leg wraps was just under $800, with a savings of approx. $700. The wraps are being made in Germany, so it will be a while before L-A gets that call. But thankfully, they will come. L-A will wait to sign up for a lymphedema therapist until AFTER the garments arrive (otherwise we'll have to go back to bandages, and that's a lot for Tony!!)
Jun 20, 2022 - Tony had B-12 shot by Dr. Lindholm
June 24,- July 1, 2022 - L-A and Tony had needed break in Calabogie timeshare. L-A's sister stayed with Steve for the week, while working from his home.
July 5, 2022 - Steve check up with Dr J. Put back on nighttime med, given test for a possible UTI. Tony checked and given a PSA test, needed to monitor the prostate cancer (what a kindness of God, he was told by a urologist it would take six months to wait for an appointment, even though he has prostate cancer! Thank you, God and also Dr. J! Tony was later told by Dr. J on August 25th that his PSA count was around 4, even better than it was in South Africa. This is another TKOG.
July 6, 2022 - L-A has second fitting for lymphedema compression garments (Lymphema Fitter in Scarborough). Tony and L-A were taught about how to apply the garments everyday, and for their care. We are to return for the second vest the following week or so. The vest is to be washed in a garment bag every second day. We'll need that second vest soon!
Tony asked the fitter (Sandra) if we can manage without a lymphedema therapist for now since we can't afford the more expensive Ontario therapists (Este was R500 - $45ish. Canadian ones would be over $100)
July 8, 2022 -Tony gets another B12 injection with Dr. L.
July 11, 2022 2 pm - L-A appointment with foot doctor re possible toenail operation (not covered under OHIP but necessary)
July 13, 2022 -Tony sees oncologist Dr PB at Princess Margaret Hospital, has blood work to establish a base line, and pre-treatment EKG to check heart. L-A had similar preparation for pre-chemo.
July 14, 2022 -Tony got another B12 injection with Dr. L (noon). L-A had an assessment by Dr. L towards a disability certificate. Unfortunately, he's not well versed on primary lymphedema (just secondary), so it's not going to be in the list, even though this is an issue in L-A's legs/feet. However, the osteo arthritis in the knees can be "proven" by an x-ray, and we have the spine MRI and report that shows the serious issue in L-A's back. This may be enough.
We needed to go to Service Ontario to renew L-A's health card (and driver's license). We went to two Service Ontario locations, when we were told at the first that we had to declare to SO that we arrived back in Canada. They cancelled our cards, although they were still being used by our respective hospitals and doctors with no complaint! After a 1.5 hour wait, all was amended, and we have slightly new numbers (the affix letters are different). We will have our cards in August.
July 15, 2022 -Tony started immunotherapy at Princess Margaret Hospital. We found that OHIP only began covering this treatment two days prior! The cost of one infusion is $1,400, so the med team asked four times Tony's info. Tony had no problem with the infusion in his right arm. He returns in roughly three weeks, but will have an oncology consult each time. The side effects that came up in the first two weeks were tiredness and weakness, so Tony has to manage his tasks to not do as much as he used to do.
July 18, 2022 -Tony got another B12 injection with Dr. L (noon).
July 19, 2022 - Tony - follow-up eye appointment at Toronto Western Hospital. All is good with his eye. Tony was asked to see an optometrist in one month to get a new prescription for his glasses.
July 23, 2022 - L-A had extensive x-rays on knees and hips to prove osteo-arthritis towards a disability certificate. It is always a challenge getting to this facility, along with standing in poses for the scans. The x-ray tech was very kind, although we had to do the poses over and over so that L-A would not have to return.
July 28, 2022 -Tony B12 injection with Dr. L (noon).
August 3, 2022 - 11 am - Tony - oncology consult at Princess Margaret Hospital. L-A suggested to ask Tony's oncologist for Celebrex, which would make him more able to make appointments and treatments. The old back and leg problem he had in South Africa has returned, making it very painful to walk, unless he has anti-inflammatories. Both Dr. L's insisted he be off Celebrex due to his age, and Dr L said she would order an x-ray at Richmond Gardens. When Tony went for the x-ray, it turns out that she forgot to send the requisition, so they will continue to reach out to Dr. L for a re-scheduled x-ray. Meanwhile, Dr P's Celebrex is half the strength of the South African stockpile, but manageable with Tylenol 1. Advil/Ibuprofen was also suggested as a substitute.
August 5, 2022 - 2 pm - Tony - Immunotherapy infusion at Princess Margaret Hospital. Tony shares in his own words: I was in the Systematic Therapy waiting area for 2 hours before being called to my bed, and nurse Amanda. When she had finished putting in my drip, I asked her how long today's session would take and she said 45 minutes. It was about 10 minutes later than I suddenly felt I was going to faint. I called the nearest nurse and she called Amanda and soon there were four of them around me. Then my middle back started giving major pain, radiating around my trunk. One of them told me this was temporary and that the pain would go as they gave me Benadryl, used to treat severe allergies. Her words were a great comfort because before that moment it crossed my mind I was breathing my last. I had experienced an allergic reaction to the infusion. They had stopped the infusion while the Benadryl did its work and the pain in my back subsided. A doctor arrived who directed operations. While the nurses measured my vitals evey few minutes, I rested for half an hour, and then they turned on the infusion drug. After 5 minutes the pain in my back returned, but at much lower level than before, so they again stopped the infusion drug and started up the Benadryl. This time it was sufficient, and the infusion drug was re-started until I had taken in the full dose. They weren't going to waste any of the precious liquid. I was assured that this would not affect my staying on the immunotherapy program, and they told me it happened to a small proportion of patients.
August 8, 2022 - 12:45 pm - L-A follow-up foot doctor appointment with Dr. Silver. L-A will be seeing him for another few months to get the nails growing the way they should.
August 11, 2022 - 11 am - Tony B12 injection with Dr. L
August 24, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital, Tony saw Dr Feng in place of Dr. B. He wasn't concerned about Tony's reaction to the immunotherapy.
August 25, 2022 - Steve was taken to Dr. J about a very stubborn cough and congestion that he's had since we arrived in Canada, but is getting worse. We were advised to first test him for covid (he was patient and it was negative), and he was given an antibiotic, stronger cough syrup and a requisition for an x-ray (unfortunately we couldn't take him on Friday due to Tony's immunotherapy, and the place is closed for the weekend.
August 26, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital. There were no problems, other than a deep sense of yuck in Tony's tummy. The nurse added the Benadryl to the infusion so there would be no allergic reaction.
August 29, 2022 - Steve chest xray Sherway Gardens. Turns out this was a minor but stubborn infection. After having serious antibiotics, he was given an additional cough syrup, since he is still mucussy.
September 6, 2022 - L-A foot doctor followup, which will still need yet another visit. Tony came as well to ask questions about getting new orthotix, which he really needs.
September 12, 2022 - 11 am Tony bloodwork @PMH
September 14, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
September 16, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
September 22, 2022 - 12 pm L-A - with gynecologist Dr. Patrick Liao (wonderful man). Referred by Dr L re hot flashes and needs a pap smear.
Had a pap smear but told can't prescribe hormones due to past of having breast cancer. Needs Andrea Eisen's permission (tumour wasn't responsive to hormones, so it may not make a difference. Grabbed his card, so Andrea Eisen's assistant can fax Dr. Liao the approval if needed.
September 23, 2022- 11 am Tony - CT Scan Toronto Western Radiology (Imaging) Dept. Was later told that his tumour has increased and is NOT shrinking. Tony decided to keep on the immunotherapy and have another CT scan in December to monitor the tumour's progress. If it's not better, Tony will go on chemo.
September 28, 2022- 11:00 am L-A dental appointment. We no longer have dentist approval over L-A's teeth regarding taking zoledronic acid infusions. Ryan said that he would examine L-A's teeth fully and research if any of the chemo blends damaged L-A's teeth.
October 3, 2022 - 11 am L-A foot doctor, 11:20 Tony foot doctor. L-A is to continue toenail work. Tony ordered new orthotix. Cost over $600.
October 4, 2022 11 am Tony bloodwork @PMH (possible)
October 5, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
October 7, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
(Mon) October 24, 2022 - L-A appointment with oncologist Dr. Eisen. M6 Breast Health Clinic H. 11 am. Dr E told L-A earlier that scans and bloodwork need to be done by the local doctor (which is different than South Africa, but understandable). It turns out that this was a misunderstanding. Had an excellent visit. L-A was told NO to taking ANY kind of hormone, since it still increases a risk of cancer resurgence, and she suggested a prescription that may help. She sent it to our local doctor.
Dr. E also was apprised of the additional dental treatment and the carefulness of this dentist. We discussed the biopsy in the right breast, and she asked if there will be any further scans (there is on December 5th). It turns out that the tissue that the South African radiologists thought was a cyst and Dr. Jackson said was benign. Dr E said that the lump is hyperplasia. It turns out that this lump's cells grow quickly (which is why its sore), and that there is a chance that these could turn cancerous. She is very suspicious over the lump. Ok, we will go with Dr. E's assessment. She said that she will follow up with a phone call appointment in January.
October 26, 2022 - 11 am L-A - complete scan (lots of x-rays and panarama xrays). Ryan told L-A that in order to take zoledronic acid, there are two more fillings ($200 each) and in order, there are four crowns to add over teeth that are patched together with dental stuff (the original teeth aren't solid). Each crown would be $1,310 or so, totalling to $5,600 for all the dental work. So due to our financial situation, we can: 1. do the dental work but not all the same day and carry the balance on L-A's credit card, 2. pull L-A's teeth out completely and get full dentures (L-A doesn't like that, since she sees Steve struggle with his). 3. Do the fillings, and don't take zoledronic acid. The dentist told her, that her life is more important than a few teeth. It left a lot for L-A to think about.
October 28, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
October 31, 2022 - 11 am L-A foot doctor, more toenail work. Tony is having his orthotix adjusted to be more comfortable.
(Wed) November 3, 2022 - L-A appointment with RN Ingrid White, M6 Breast Health Clinic H. 10:30 am. Followup on Lymphedema treatments. Ingrid measured L-A's arm and told her that she's gained weight. She has referred L-A to a dietician so that L-A can monitor her diet better (she's been monitoring Tony and Steve but not as much for herself). L-A also needs to have lymphedema treatments (can't afford), plus lotion all over her body, since dry skin and itching can cause infections. She also needs to drink more water to help clear toxicity and lymph issues.
November 16, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital
November 18, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital
November 21, 2022 - 12:40 pm. Dentist Ryan - two fillings (will advise we will do the crowns, but not all at once)
November 28, 2022 - 11:00 am L-A foot doctor
November 30, 2022 2 pm - Tony - oncology consult at Princess Margaret Hospital
December 2, 2022 - 2 pm - Tony - infusion at Princess Margaret Hospital
December 2, 2022 - 8:15 pm Tony CT scan - Princess Margaret Hospital
December 5, 2022 - L-A breast ultrasound at Etobicoke General Hospital.
December 12, 2022 - L-A two crowns inserted at Cloverdale Dental Group. Ryan gave 15% off due to L-A not having insurance. It was still $2,229.
December 14, 2022 - L-A breast ultrasound follow-up phone call appointment via Etobicoke General Hospital. - The growth is still benign! He didn't mention that the material is hyperplasmic.
December 28, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital. Tony was encouraged that the tumour is shrinking in some areas. Tony will still continue on immunotherapy. Meanwhile, Tony is getting more breathless and weak, with taste issues.
December 30, 2022 - 11:30 am - Tony Thoracic oncology - Immunotherapy infusion, Princess Margaret Hospital. Tony's infusion was moved a little later because he had a cold.
January 3, 2023 - L-A and Tony met with their new family doctor, Dr. A Makar, who we really like. She ordered tests for Tony's prostate (including an ultrasound), bloodwork for L-A (which opened up a new area of concern, a fatty liver). L-A was sent for an ultrasound and blood work. L-A reported to her Sunnybrook dietician about the fatty liver, which can be helped by a different diet. (In particular, since the liver issue is caused by obesity and likely fast food is the culprit). Going off butter will be a challenge.
January 16, 2023 - L-A two more dental crowns. No issues this time, other than a sore jaw. Ryan asked if L-A would tell him when/if she's taking zoledronic infusions.
January 17, 2023 - 3 pm L-A dental cleaning
January 19, 2023 phone appointment with Dr. E (L-A's oncologist). This appointment went well. L-A informed Dr E of the new family doctor, so she is on file. L-A said yes to zoledronic acid infusions, which will begin in February on a Tuesday.
January 21, 2023 - Tony - surgery to take tooth out (beyond a dentist's care due to the immunotherapy drugs)
January 24, 2023 L-A dietician appointment - to aid going on Mediterranean diet to get healthier, especially for fatty liver, but to get the weight down.
January 25, 2022 - 2 pm - Tony - oncology consult at Princess Margaret Hospital. Dr. B showed Tony a progression of x-rays from early 2023, and it showed that the immunotherapy is not really helping. It was decided that he would switch to chemo the following week.
January 29, 2023 L-A foot doctor appointment - it's surprising L-A still needs this, but it helps.
January 29, 2023 L-A bloodwork - ALT test and hepatitus check for liver (very high liver ensymes)
January 31, 2023 - 8:45 am - Tony Thoracic oncology - chemotherapy infusion, Princess Margaret Hospital.
January 31, 2023 - 2:30 pm - L-A dietician call
February 7, 2023 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
February 22, 2023 - 2 pm - Tony - oncology consult and tests at Princess Margaret Hospital. (Tony's 82nd birthday)
May 23, 2023 L-A dental cleaning and check up
June 29, 2023 11 am Lymphedema appointment with RN Ingrid White (could be moved if we go to Calabogie)
July 25, 2023 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
October 31, 2023 - L-A oncology consult, Dr E., Breast Health Centre, Sunnybrook Hospital
January 9, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
June 25, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
December 10, 2024 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
May 27, 2025 - L-A pre-infusion blood work, and then zoledronic acid chemo, Odette Cancer Centre, Sunnybrook Hospital
L-A - Manual Lymphatic Drainage / physiotherapy sessions start (to be scheduled) - cannot afford