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
May 27, 2022, 9:30 am (9 am arrival) - L-A port removal surgery, radiology dept, Sunnybrook Hospital Ground Floor, wing M. (Need to prepare port area with a special cream before the surgery, and put a plaster on the area). Bring the cream/gel with me. (Tony to have a PCR covid test at Toronto Western hospital for his procedure on May 30th)
May 30, 2022 - Tony - oil removal surgery at Toronto Western Hospital, TBA time.
June 1, 2022 - Tony appointment with Dr. de Perot (Revealing diagnosis, possible ways of treatment!!!!)
June 2, 2022 - Steve appointment with Dr J. Will arrange for tests at Etobicoke General Hospital. L-A appointment online with Lymphedema Clinic (Zoom class)
June 9, 2022 - L-A appointment at Lymphedema Clinic, Odette Cancer Care, Clinic D, Sunnybrook Hospital. Dr Ingrid White, 3 pm
June 24,- July 1, 2022 - L-A and Tony have needed break in Calabogie timeshare. L-A's sister will stay with Steve for the week, while working from his home.
TBA appointment - biopsy of nodule on L-A's right breast - by Dr. in/near Etobicoke General Hospital (arranged by Dr. Lal)
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).
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
May 27, 2022, 9:30 am (9 am arrival) - L-A port removal surgery, radiology dept, Sunnybrook Hospital Ground Floor, wing M. (Need to prepare port area with a special cream before the surgery, and put a plaster on the area). Bring the cream/gel with me. (Tony to have a PCR covid test at Toronto Western hospital for his procedure on May 30th)
May 30, 2022 - Tony - oil removal surgery at Toronto Western Hospital, TBA time.
June 1, 2022 - Tony appointment with Dr. de Perot (Revealing diagnosis, possible ways of treatment!!!!)
June 2, 2022 - Steve appointment with Dr J. Will arrange for tests at Etobicoke General Hospital. L-A appointment online with Lymphedema Clinic (Zoom class)
June 9, 2022 - L-A appointment at Lymphedema Clinic, Odette Cancer Care, Clinic D, Sunnybrook Hospital. Dr Ingrid White, 3 pm
June 24,- July 1, 2022 - L-A and Tony have needed break in Calabogie timeshare. L-A's sister will stay with Steve for the week, while working from his home.
TBA appointment - biopsy of nodule on L-A's right breast - by Dr. in/near Etobicoke General Hospital (arranged by Dr. Lal)
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).