May 2022

Some time in May my son-in -law, Garth (Maureen's husband) , discovered a lump growing on his lower back. It was initially diagnosed as problems with scar tissue from an earlier back operation. It continued growing and his health started to be affected. Maureen is a Registered Massage Therapist (RMT) living in Parksville, Vancouver Island BC where she has her business.. Garth and their son Spencer stayed with his Mother in Vancouver as all the medical support team for his treatment is there. The following are excerpts from her emails to her family during his treatment.as she details the ups and downs of Cancer treatment. 

June 17 2022 - Initial Diagnoses

After many Dr visits and tests Garth was diagnosed with Non Hodgins Lymphoma (NHL) and given 2 year to live. He will have full body CT scan in the next few days to see if the cancer has spread. Then radiation therapy to to shrink it and then followed by chemo for six months.

June 18 2022

Garths Drs are researching his optopns as there are some very exciting developments in the treatment of this cancer. The CAR T Trial is the most exciting. It was approved for Garth’s specific cancer Oct 31 2021 in Canada. The drug is called Tecartis. Garth has to go through a second line of treatment before he can be offered CAR T. It is presently being done at Princess Margaret in Toronto. It was approved before the clinical trial ended because the patients were not dying. It’s used in end stage. Garth’s not there yet. They don’t know how long it will work but it is definitely hope.

Jun 20 2022

The tumour has grown significantly. He was getting no action. His document for the PET scan was not put through Friday. He called the oncologists office to see what happened and they did not know. He tried to get an appointment with the oncologist who has not seen him yet and only saw pictures of tumour taken 1 week ago but the office said he had no appointments. They also said it would be at least a week for the scan.

I talked to him on the phone and told him to drop what he was doing and drive directly to his office and demand to be seen.

He was seen. The dr has put him on strong steroids to stop the growth and start to shrink the tumour. He told him he will get him in faster for the scan. He is also getting him into the main BC cancer clinic at VGH where he had his stem cell transplant. There is a clinical trial he will be in.

They know it is NHL but not if it is Mantle cell Lymphoma. they won’t know if it’s his mantle cell recurring or an entirely different one. The mantle cell Lymphoma. is just another super rare presentation of Lymphoma.

Jun 21 2022

We are pushing for radiation ASAP. He just needs a couple more tests Monday and Tuesday. His advocate is taking care of things and marking sure it’s all gets pushed forward. Praying for a miracle.

He is in a lot of pain and the tumour keeps growing. He is getting weakness and numbness in his feet and legs esp the right. The tumour is larger on the right. He is also getting weak in his hands and keeps fumbling. His balance is off and he is no longer very steady on his feet. He gets suddenly extremely tired and cannot function. He needs to continually eat high protein to keep going. They upped his steroid to see if it will help.

Dr ? his advocate is in contact with all his Drs pushing to get treatment started ASAP. He has made a house call on Thursday to put him on Hydromorophone and see the tumour. He is concerned it may ulcerate and that would be bad. He is calling or returning Garth’s call everyday. If Garth decides to litigate re the botched diagnoses he will help him. We are lucky to have him on Garth’s side. We spoke today and told him how much Garth has deteriorated in the past 4 days. He is no longer able to drive. It’s too painful and takes too much energy. Spencer will be taking him everywhere and feeding him. I have been cooking non stop since Friday. He was too wiped to do Canada Day so we just sat on the deck and fed Fred (his tumor).

Jul 31 2023 - Cancer in remission

After treatment Garth has recovered enough that he was able to fly to Newfoudland for a family event there.

Aug 19 2022

We are back from out Newfoundland trip. Garth has made a decision that if the treatment does not work or if side effects are too horrible he is going to discontinue treatment. Garth is in North Van. His Drs say he is depressed but that what he is feeling is normal. He just feels so awful and has for such a long time. He wants quality of life instead of quantity.

Sept 29 2022

Garth has a bad side effect from his radiation. It’s not something he wants to talk about. He has edema in his scrotum and penis. A man’s worst nightmare. I did 2 weeks of manual lymph drainage treatments twice a day before and after regular work and lots of research on management. I kept him here until we had it managed and he felt confident managing it on his own and doing self treatment. I had to take him shopping to get him clothes that could fit properly and special compression undergarments. All while looking after him and Spencer while working full time. Spencer was in crash mode from looking after Garth because of his own health issues.

They are both a lot sicker than they let on in Newfoundland.

Oct 6 2022

He is being admtted to Vancouver General Hostipal (VGH). Will keep you posted. He is too weak, sick and breathless to be home.

Oct 9 2022

Garth is also on oxygen as needed. Too much exertion and he gasps for air. Or laying flat or while sleeping. He was diagnosed as anxiety. When it started. And they did not deviate even though it kept getting worse. This started about 3 weeks ago - the shortness of breath - and progressed to the gasping and hyperventilating. It’s from his heart and his lungs; not his brain stress.

He wakes gasping. I saw it Wednesday night. Very scary. Had to get him up into a chair, give him Adavan get him to take deep breaths, open the windows, give him hydromorophone. Calm him down prop him back in bed put a fan on him and hope got the best. I told the oncologist it was not anxiety.

Oct 14 2022

They have finished all of his tests and are starting his naext round of treatment on Monday. He is in the clinical trial. The cancer has spread through his entire body. Right now it is in his pancreas, Kidneys, abdomen, testicles, heart, lungs, chest cavity, esophagus, left upper arm and left calf. They want him on treatment ASAP. It’s been held up pending his bone marrow biopsy which is Monday morning and mandatory for the trial. It was supposed to be Wednesday this week after his PET scan but it didn’t happen. Otherwise I think he would have started treatment yesterday.

Some good news from his oncologist. The trial drug is 80% effective at turning things around even with such an aggressive cancer. They are hoping it will cross into the testicles but there is no track record for this as Mantle Cell does not typically invade this area. If not he may need radiation but we will cross that bridge if we have too.

Re the CAR-T cell therapy, it is approved and available at this time in Toronto but it is not being funded by any government or cancer agency in Canada. The cost of the treatment is $1,000,000. Yes that is the correct amount of zeros. Currently there are negotiations re funding between the provinces, the federal government, the drug company and Canadian Cancer society. Dr. ? is expecting there to be a funding model sometime in the new year.

So let’s pray he is in the 80% response group and he can be in remission long enough for the CAR-T funding to come through. The average remission is 12-14 months. So also going he is above average.

But his illness is unusual in its presentation and aggressiveness so Garth is a wild card.

Oct 16 2022

They are trying to kick him out of the hospital today while he waits for a bed in BC cancer. But he is refusing. Crazy shit! Like he is not sick enough to be there! The guy can’t walk 10 steps without becoming completely exhausted and gasping for air and he just gets sicker by the day. The system is really messed up. Also forgot to mention people feel better with in a few days to a week with these trial drugs so we will know PDQ if it’s working. And the side effects are very minimal.

Cancer is still spreading through his body. They are finding more masses. He is getting more and more fatigued. Treatment cannot come soon enough. This cancer is a ferocious beast. Garth has been given only a few days to live if the new clinical trial drug does not work.

October 17 2022

Has been moved to BC Cancer. He is finally getting the care and monitoring he needs. Starting critical trial treatment in about an hour with the current standard of care drug Ibrutunib Then they will work on getting him switched to Acalabrutinib which has less side effects than the standard of care drug. This is the alternate drug used in the study that was approved for use in 2021. Because of the lymphoma around his heart he has a slight blip on his ECGs which is why he was denied the study. Ironic that they want really healthy people in the study. Shows the flaws and biases in the clinical trial system. They are pretty sure they can use the heart blip to get approval as the heart side effects are 4 times greater with ibrutinib than Acalabrutinib. These are the BTK inhibitors. If he responds he should be feeling better in about a week.

He is no longer able to eat solid food. He feels full after a couple of bites. Scary stuff. He is completely fatigued. He is basically dying right now.

1st dose Clinical trial drug in. No reaction, no side effects yet. Finally some real hope instead of just waiting.

Oct 19 2022

They are releasing him in morning. His breathing is better but still filled with lymphoma. They keep telling him his blood work looks great. He is very tired. They are trying to set up some kind of home care starting Monday. Caregiving for someone so sick is really out of Spencer’s depth but at least he is willing. I will be sticking around until that happens.

Nov 1 2022

It’s been 13 days since he started the meds. He was released on Oct 20 and I brought him back to Parksville to convalesce. He was trending in the right direction until Friday. He went for a walk for the first time but pushed himself. Saturday he woke with sweats and chills and a high heart rate but revived after good food and coffee and fluids. He felt better through the day but his heart was racing. Sunday he felt worse. We knew he needed to see someone but he wanted to wait to contact his oncologist. Monday he was worse again with chills, sweats, dizziness weakness and his shortness of breath started. He was checked out at urgent care and they called his oncologist. They are hoping it’s just an infection and started him on broad spectrum IV antibiotics.

He is going this morning back to Vancouver to ER at VGH where he was before on Oct 6. He says he feels like the cancer is spreading again. I don’t know what treatment options he’s got if he has failed the BTK inhibitor. Before he was released on 20th

He has fluid around his heart. Triggered by the lymphoma. It was there before. But it has increased significantly. When he exerted himself on Friday they figure the stress on his heart caused the sweating , chills, and other symptoms to increase. So now he is in the right place. With the right team. They are still trying to gauge if the lymphoma is decreasing. He’s so filled with it, it’s hard to tell.

So for now he is a primary complex cardiac patient instead of a cancer patient. Because the heart issue is acute and more life threatening than the lymphoma.

The procedure to remove the fluid is high risk in his weakened state from the lymphoma but because he has such a strong heart he is at low risk of a cardiac event if they wait and see if it reduces. For most people it is life threatening and they remove the fluid because a weaker heart cannot take the stress.

Nov 9 2022

They were able to turn things around again. Let’s hope this treatment continues to work. He will get the chemo every 3 weeks for 6 months or until it stops working. The. Try another chemo combo. Got to bridge that gap to the CAR-T funding.

Nov 24 2022

So far so good. Oncologist felt very encouraged with his progress. She is going to give him the R in the R-CHOP Treatment early next week in addition to chemo tomorrow. She feels he is strong enough. It’s the one he was so allergic to in 2019. It will give him a boost to put him in complete remission hopefully. Right now it is partial. We are hoping with this treatment and then other options and clinical trials after, that we can avoid the end of life palliative care for some time. As long as Garth is willing to fight he has a chance.

Dec 1 2022

So far Garth is responding well. But his heart rate keeps climbing. If all is good, second Clinical trial treatment Friday. Hope everyone is doing good.

Jan 3 2023

We think Garth’s cancer is back and the treatment is failing. He had to miss his staging scan last week. His white blood cell count and neutrifils were down to zero on Wednesday. His scan was Thursday. Our GP did not want him in a hospital setting. He’s been taking these special injections to get his bone marrow to grow more but it’s very painful. He missed his week because of the storms and holiday. It could not get delivered before Christmas. He got suddenly very tired since Sunday. Could not walk in a store before that. He was too tired last week. But he’s even more tired. Spencer and I had to help him to bed. He was on the couch but couldn’t get up last night. Now his testicles look like they are growing again and his heart rate is creeping up again. Lymphoma is death by organ failure. It seems to like to go after his heart. It still has not recovered from October and early November damage it caused. Blood work says all his other organs are great right now. He has his oncology appointment Thursday. Then chemo Friday. But they need to do this staging scan. They will need to switch gears with treatment. The bc cancer has been no help not returning calls over holidays even to our Dr.’s. So we are In limbo. My impression is they will admit him again on Thursday so he can get all the tests in a hurry as an inpatient. Or sooner if anyone calls us back.

Jan 6 2023

CT scan good. Shows there is no rogression of disease. There is still some disease. Oncology says this is good. He is only half way through treatment. He had Chemo today and had a reaction from the drugs he took to prevent an allergic reaction. Bizarre. Getting ultrasound on swollen calf to rule out blood clot. Dr thinks increase in symptoms were a combo of him taking way too much steroids last treatment combines with severe drop in WBC from delay in bone marrow boosting injections due to weather and holidays. So all good for now. But he has a long fight ahead and they are hoping a clinical trial for CAR-T therapy at VGH will be available to him. Most people don’t make past 4 lines of treatment with Garth’s disease. He is on line 5 right now. So they don’t know his prognosis beyond his continued response to treatment. He is taking 45 drugs every day

Jan 15 2023

Had to take Garth into ER on Thursday night. He had a high fever. He has an infection but they don’t know what. He’s on heavy duty antibiotics. Spencer took him in at 1:30 in the morning. It was a fight to get him to go. He just wanted to sleep. He was delirious and out of it. Didn’t think he was sick. Told the Dr he didn’t need help. They wanted to admit him for 2 days. He refused. They wanted to give him 2 days of antibiotics before discharge but he refused that too. Poor Spencer was beside himself and wanted to pop him one. But he was too sick to realize he was sick. If that makes any sense. They came home with no treatment. The oncologist finally got through- we slept through her 3 calls- and explained that infections can get out of hand quickly. That he was offered the standard of care. She still had to convince him to go on antibiotics. He was still convinced he was not sick. He’s been sleeping since or too tired to do anything. He had another fever over 40 on Friday night. But the fevers seem to be over so guess the treatment is working. He finally agreed last night that he is sick. But still have to monitor him closely. My brain wants to explode. 🤯

Jan 22 2023

Garth was in ER all day Friday. Needed 2 pints of blood. Had to leave work to take him. Got home at midnight.

Feb 1 2023

CAR-T is a go in Vancouver. Could start as soon as three weeks. 95 % survive the procedure. For about 30% of people the altered CAR-T cells have not gone away. That’s 5-10 years out. So for those people they think it may be a cure. They are working on finding out why that is so they can try to make it happen with everybody. The Mantle cell subjects are in the 5 year range. After 6 months we will know if it worked for him. It works in about 80% of people. The average remission is 14 months. Hoping Garth is in that rarer 30%.

Feb 6 2023

The CAR T cell is on. If it works we will know in six months. They won’t go ahead right now if he is in full remission. If he is not they will go ahead. We will know more in the next couple of weeks. They are doing a study. That is how it’s being funded. So he has to have active lymphoma to participate.

Feb 7 2023

Garth has one more chemo treatment next Friday on Feb 17th. Then he has a PET scan on April 4 to see if he is in remission. If he is not they will go ahead with the CAR T treatment. He has to have active lymphoma to qualify for the study. He will probably need a blood transfusion this Friday and 2 weeks after his last treatment. Day by day. We are all exhausted. He has to take meds 4 times a day so we are up at 3:00 am every night. I can’t always get back to sleep so by the weekend I’m just a basket case working all week with fatigue. I had lots of sleep over the weekend but I’m already wiped and it’s only Tuesday. I just have to keep focusing on better days ahead.

Feb 12 2023

Spencer is calling 911. Think Garth is having a stroke. He was supposed to get a blood transfusion Friday but there have been mix ups and delays. They are in North Van. Spencer said he can’t speak. I told him to call 911. I am on 3:20 ferry. Can’t get there sooner. I will update as I know more. Hoping they take him to VGH where his care team is.

They are doing a CT to see if it’s a clot or a bleed but they also think it may be from lack of oxygen in brain from his low RBC’s. His platelets are also on the low side. They cannot treat until they know the cause as each treatment is different. He’s on oxygen. The wrong treatment could make things worse. Either way he needs the transfusion. RBC’s in the 60’s range put you at high risk for a cardio vascular event. Plus his heart rate is still over 100 from the stress of the tumour and fluid build up he had around his heart before the chemo. Then there is the stress from the chemo itself. So he was at an even higher risk. We have been pushing for him to have an evaluation by a cardiologist for months. But they have kept saying it isn’t necessary. Well. Guess they were wrong. Again. This event could have been prevented. Either by meds or an earlier transfusion or both. Our GP thinks they push his body to hard and don’t treat soon enough. She has said that a few times when she has called about his blood work results and I told her the oncology team thinks is all ok. Well. I guess she was right. Again.

Feb 14 2023

Garth’s a bit addled. His speech is off. Can’t find the right words and is forgetting conversations. But they were sure it wasn’t a stroke. He was evaluated by a top neurologist. His brain is tired. But he feels better with 2 pints off blood.

His left hand went numb. Then his cheek went tingly and the back of his throat. Then his tongue stopped working which is why he could not speak. It was all garbled. But Spencer was able to get the gist. And called 911.

I think he just needs rest. He feels off. We are hoping it won’t affect his candidacy to be in the study for the CAR T. The head Dr at the emergency said she will go to bat or him and do any paper work he needs to support that it was not a stroke and caused from his RBC’s being in the 60’s for over a week. All the medical staff at the ER and the EMT’s were blown away that It was not considered urgent even though he was getting headaches, his eye was getting weird, his feet were swelling, and his hands kept going numb and his legs couldn’t support him. It’s just crazy.

Feb 20th 2023

Garth woke yesterday with cloudy vision in his left eye. When he stood up he lost power in his legs and had to sit so he ended up on the bedroom floor. He went back to the optometrist who compared his exam from Wednesday and the nerve in his left eye had become more swollen. His vision was worse also in the left compared to Wednesday. He is still totally blind in the right eye. He called the ophthalmologist who sent us to ER for another CT and blood work. All seems OK. We saw him today in Duncan. He’s concerned Garth may loose vision in his left eye. But his nerve swelling was back to the baseline on Wednesday and his vision was too.

But Garth is having other troubles. Weird muscle spasms and weakness in his legs. Spencer and I had to help him to the bathroom and get in and out of the tub. His eye seems better than yesterday. Even though his vision was better when we were at the eye Dr today, he has these other weird symptoms. They are giving him a PET scan on Tuesday. And a blood transfusion. They may also do a lumbar puncture to check for infection and or lymphoma in the central nervous system depending on what the PET scan shows. Then possibly an MRI. He's seeing the cardiologist on Friday re the mini stroke. He sees the eye specialist again on Wednesday. They are also trying to schedule him for a halta monitor and another echo cardio gram this week. He is also a candidate for the clinical trial for CAR-T. He needs a vein check this week too. If he is not in remission and deemed well enough he may be able to start the CAR-T process next week. But the weird eye thing and weakness might be a no go. He can still get it though. All the funding has been approved. The conditions are not as rigid as a clinical trial. So it’s not the end of the road if we have to sort all this other stuff out first.

It was scary seeing him in so much pain tonight and not being able to really walk well. I gave him an adjustment to his spine and pelvis to get his nervous system flowing well to his legs. That seemed to help. He's asleep now.

Feb 22 2023

He is in remission. He has to have no stress for at least 3 months so the blood vessel to the optic nerve in his left eye can heal. But they need more info hence the tests. He’s decided not to do the CAR T at this time. He is going to listen to the oncology opthomologist. He sees an optic nerve specialist tomorrow as well. The cardiology stuff is Thursday and Friday.

It’s definitely the ischemia that caused it. Now we just have to confirm that caused the mini stroke symptoms too. The contractures he’s getting is also the ischemia compounded by the steroid side effects. He has to be on those for at least 3 months. Spencer had to push him around the hospital on a wheel chair. He was too fatigued in his legs. All his muscles are starved of oxygen. They couldn’t give him a transfusion today because of the PET scan dye. His threshold is 90 now instead of 70. The oncologist ophthalmologist wants it well above 90. So hopefully tomorrow.

He is in remission. He has to have no stress for at least 3 months so the blood vessel to the optic nerve in his left eye can heal. But they need more info hence the tests. He’s decided not to do the CAR T at this time. He is going to listen to the oncology opthomologist. He sees an optic nerve specialist tomorrow as well. The cardiology stuff is Thursday and Friday.

It’s definitely the ischemia that caused it. Now we just have to confirm that caused the mini stroke symptoms too. The contractures he’s getting is also the ischemia compounded by the steroid side effects. He has to be on those for at least 3 months. Spencer had to push him around the hospital on a wheel chair. He was too fatigued in his legs. All his muscles are starved of oxygen. They couldn’t give him a transfusion today because of the PET scan dye. His threshold is 90 now instead of 70. The oncologist ophthalmologist wants it well above 90. So hopefully tomorrow.

Feb 22 2023

He is in remission. He has to have no stress for at least 3 months so the blood vessel to the optic nerve in his left eye can heal. But they need more info hence the tests. He’s decided not to do the CAR T at this time. He is going to listen to the oncology opthomologist. He sees an optic nerve specialist tomorrow as well. The cardiology stuff is Thursday and Friday.

It’s definitely the ischemia that caused it. Now we just have to confirm that caused the mini stroke symptoms too. The contractures he’s getting is also the ischemia compounded by the steroid side effects. He has to be on those for at least 3 months. Spencer had to push him around the hospital on a wheel chair. He was too fatigued in his legs. All his muscles are starved of oxygen. They couldn’t give him a transfusion today because of the PET scan dye. His threshold is 90 now instead of 70. The oncologist ophthalmologist wants it well above 90. So hopefully tomorrow.

Feb 26 2023

Just to update. Garth spent 3 days in hospital getting IV steroids. He was released Friday morning. He was told upon release he would have a spinal tap next week as they couldn’t schedule it. Spencer picked him up and they went to the dentist for Spencer’s wisdom teeth. Oncology fellow phoned him and said they had a spinal tap for him and ge needed to come back. He told her he could not because he did not have a driver. Spencer wasn’t slowed to drive for 18 hours after the anesthetic. She got really angry with him. Told him this was his fault because he didn’t get a taxi voucher like she told him. She told him his threshold for his red blood cell was now 80. The ophthalmologist wants him at at least 90. After he had his cardiology appointment at 1:30 over the phone she agreed it should be at least 90. She said the only reason he is alive is because he has such a strong heart. He is suffering from the effects of prolonged ischemia because his threshold of 70 was too low for his body. His heart rate is over 100 most of the time and can go up to 125 or more. But the oncology fellow left him at below 70 for too long before transfusing. At least a week and it caused his TIA and his blindness. The fellows are the oncologists in training. His main dr was off during this time and they were in charge. It’s all very frustrating and his current situation probably was preventable had they paid more attention to his symptoms. They told him it was side effects of the drugs but it was the lowered blood cell count.

Mar 2nd 2023

More very bad news. Garth’s cancer is in his central nervous system. He is having more trouble with his left eye. He has an appointment with the radiation oncologist this afternoon. He is currently at the eye specialist.

The cancer caused the blindness. Probably the speech TIA. It infiltrated his vessels to his right eye. It seems to be doing the same thing on his left.

CNS lymphoma is never good. We don’t know how long he has. Or if there is treatment or if he can even get CAR T. I’m heading over to North Van. Gonna have to take more time off. Can’t leave this all on Spencer.

Mar 3 2023

They are starting radiation on his brain tomorrow. I just spoke to Shelagh and got the low down on what that entails. It won’t be pretty but may prevent him from going blind. We don’t know about other treatment options yet. If there are any. But it is in his eyes, his brain stem and his spinal cord. It explains a lot of what has been happening. Shelagh says radiation on the brain will slow or stop the progression for quality of life but it can cause cognitive decline. However what he has is so much worse at this point. With just radiation he has a couple of months hopefully with sight. Spencer is devastated of course. Garth is trying to be brave. I am I. The ferry line up. I will update as things progress.

Mar 4 2023

Thanks for all the kind words. It means a lot. He woke this morning crying because his head inside hurt so much. I gave him so hydromorophone. And his steroids. He tried to go to the bathroom but was unable to get his penis to work right. We think it was damaged when he had tumours in it. It stays contracted so he is peeing himself quite often. He sees a urologist next week. This happened twice today. It’s happening more and more. He fell twice today also. His legs get like jelly and they won’t support him. And he crumbles to the floor. It happened when he got out of the chair this morning before he peed himself in the bathroom.Luckily the bed was there so he could fall forward onto it. and then in the bathroom he fell as he was trying to go and peed on the floor because he couldn’t get up. He was stuck between the shower and toilet.

It’s personal but it’s the reality of cancer. Nobody ever talks about the horrors of the day to day deterioration of who you are as a person. It erodes that bit by bit. Still hoping for a miracle but worried about how much damage may be done if the miracle happens. We don’t know if what’s happening now is reversible. Or if he is getting brain damage. He is his normal self today. We just got up. He made coffee. He seems himself. So it’s like last night never happened.

Mar 5 2023

I called the emergency line at BC Cancer. Spencer and I think he should be admitted. The Dr at BC Cancer is setting up for him to be admitted tomorrow on a safety reason. And to accelerate his appointment with his team from Thursday to Tomorrow.He still has 4 more radiation treatments this week. He had 3 episodes yesterday oh his legs giving out on him and 2 already this morning. 3 were mild and 2 were major. He looses bladder control when it happens. The last one took both Spencer and I to keep him from falling to the floor and get him seated on the toilet. That was about 40 minutes ago. Last night I was by myself. It was just before Spencer got home. He went down in the bathroom and was wedged between the toilet and shower and lost bladder control. I took everything I had to get him off the floor and do to the toilet seat. And then it goes away. I got him on the shower and he was ok after that physically but cognitive function was impaired.

This morning he was normal. Until the episodes. He is fine cognitively right now except he doesn’t think he needs to be admitted. He cannot understand it’s a safety issue. For all three of us.

Mar 7 2023    Treatment Plan.

They have come up with a chemo treatment plan. He starts Thursday. He may need more radiation in another part of his spine for 5 treatments. He finishes radiation on his brain on Thursday. He needs to spend 5 days in the hospital for the chemo. They are treating the lymphoma in his CNS with at least 2 drugs that cross the blood brain barrier and giving him another to prevent a relapse in his body. His chemo cycle is every 2 weeks.

If this puts him into remission he will then be able to do the CAR T therapy. It has all been approved in BC so he will be able to get the Mantle Cell specific treatment with CAR T instead of the study drug that he would have done had he not had the spread to his CNS.

The oncologist was realistic but positive because he is in remission in the rest of his body. It is only in his CNS. But at the same time CNS lymphoma can be difficult to treat. So let’s send him some kick mantle cell lymphoma in the ass positive healing vibes so he can get this CAR T and be well for a while.

He will need to see the oncology ophthalmologist 2x/week. Not only is she trying to save the left eye but also prevent further damage in the right eye. If it gets too damaged he would need it removed. The radiation is the main treatment and one of the chemo drugs will with the inflammation as a side effect.

Mar 8 2023

We now feel all hope is not lost for Garth. They have come up with a chemo treatment plan. The chemo is a five day process done in hospital so he won’t be released until at least Monday. I will have to see how things go with the treatment. He starts Thursday after radiation. His eye is stable with the radiation and steroids. The lymphoma is in his covering of the brain and spinal cord. It’s causing him to loose control of his legs and or torso. His torso started to become affected today. It started to waggle back and forth uncontrollably and he could not stay upright. Spencer and I had to support him and lay him down on his bed. Then again in his wheel chair in the bathroom. He was sliding off. The only thing that kept him from hitting the floor was the wall in front of him as his legs made contact with it. So glad he is in hospital to keep him safe. They are doing an MRI to see if they can do radiation to slow down the neurological problems with body control. Otherwise it’s up to the chemo. The one drug should help his eyes as well. He’s in good hands with an excellent team. I just got home. He had a really rough night. After the loss of control he had a severe headache and nausea and then vomiting. He could not have gotten the help he needed with out me being there. It could be the disease or it could be the radiation. They are not sure. I’m not sure when I will be going back to Parksville. He needs an advocate. That was obvious tonight. The care was excellent but he was unable to call for help on his own. I had to do it for him.

Mar 9 2023

Garth was throwing up until 5 in the morning. He was really out of it today. He had another spell when they went to put him on the radiation table. When he got back he was very brain fogged. He had another eye check. Still stable but the eye is still in danger. Then he crashed again with loss of body control, headache and nausea. They upped his steroids again. He’s back up to 100 mg/day. He was barely able to make it to his Urologist appointment. Spencer and I spent the day pushing him around and taking care of him. I don’t know what happens to people that sick who don’t have an advocate. Cancer is a bastard. It’s awful watching someone you love loose there brain and body function at the same time as possibly going blind. Really hoping the chemo can kick the shit out of his mantle cell. It starts tomorrow now because of the neurological problems.

Things seem to be stabilizing with the radiation. Garth says he has not had a wobble episode yet today. He was up walking and felt secure with a cane he said. He is getting his last radiation treatment right now. Just had an MRI this morning. With regular pain and anti nausea meds plus the increased steroids he was able to sleep through the night and woke feeling much better. Spencer and I are both exhausted. We are taking today off now that they have his drug schedule the way it works for him.

Mar 10 2023

Garth starts his chemo treatment tomorrow. They literally have to put baking soda in his body to lower his PH level tomorrow. Then they give him high dose methyltrexate plus another chemo drug Saturday. The methyltrexate jacks up his bodies PH. It’s really hard on the kidneys. They then have to literally flush his body with high amounts of IV fluids to restore his bodies PH. They do this every 2 weeks.

They are also trying to get approval on a compassionate bases for the trial drug Pertrabrutinib. This is a cousin to the Ibrutunib that he failed on. People who have disease progression on Ibrutunib respond to Pertrabrutanib. They both cross the blood brain barrier. Treatment evidence has shown the Ibrutunib can put CNS mantle cell into remission for over a year. There is no reason to expect the Pertrabrutanib should not do the same. Let’s hope they can get this approved for him and add it to his treatment plan on the next round 2 weeks from now.

Not sure when he will be released. I’m hoping to go back to work Monday in Parksville if Garth is stable over the weekend. Let’s hope he is.

Mar 11 2023

All went well until the end of the night. He was tired. Had a wobble when he stood to pee into his jug. Spencer was there so he could catch him and support him and sit him on the bed. It was back in his legs again. Another long day at the hospital. Garth has an IV drip 24/7 for the next 4-6 days to flush the mexaltrexate out of his body. The process took 11 hours. He gets his other drug tomorrow. The Rituxin. The one he’s allergic to. So more steroids on top of the 100mg/day he’s on for an indefinite amount of time. Hopefully he won’t need more radiation. We are still waiting for the MRI result. He won’t get released until he is stable. He is a high fall risk. So hopefully all this treatment can turn that around and get rid of his wobbles. He will need to stick close by during treatment for now until he is responding and out of the woods. For now I will travel back and forth when I can.

Spencer has been amazing. He’s stressed of course and angry and sad at the sane time. But he has really taken on the role of caregiver for his dad without us asking and with no complaints. We are really proud of him.

March 15 2023

Garth is experiencing an acute kidney injury from his treatment. It happens in about 10% of patients. The next 24-48 hours are critical. If he doesn’t improve and keeps trending down the will transfer him to Vancouver General next door to BC Cancer to the nephrology team. He is all puffy. He’s gained 6 kilograms of fluid over night. His kidneys aren’t able to process the fluids he needs to flush the toxins from the chemo treatment out so it’s leaching into his body. His voice is changing from the swelling pressing on his nerve to his voice box. He looks like the Michelin tire man.

So a bit stressed. It’s never good when the Dr. calls from the ward to let me know what’s going on.

It doesn’t mean the treatment cannot go forward but they have to lower the dose and look for alternatives. Fortunately the oncologist was already in the process of applying for compassionate use of an experimental drug. So when that comes through they can switch gears.

All this means a much longer stay in the hospital.

He also has a cancer on his spinal cord where his ribs meet his low back. It may or may not be the cause of his wobbles. He will probably get more radiation there. But they have to manage his kidneys first. The AKI is moderate to severe so pretty bad. But as long as he keeps peeing that’s good. He has a catheter in now. They put it in yesterday morning.

His left eye is stable but he has to keep taking the high dose steroids to keep it that way.

He went to a stroke clinic today. The loss of speech he had that they thought was a stroke or TIA was likely the cancer.

On and on it goes. Poor guy has been through so much. He is always in the rare occurrence of shit happening department with this illness and treatments.and yet he keeps smiling and stays positive. But he is tired of being special.

March 16 2023

Garth is more swollen today. His feet are round balls and his fingers are so fat he can barely touch them together with his thumbs. Picking any thing up or doing any self care/ hygene is very difficult to impossible depending on what it is. He needs help with all of that. He cannot sit up without help, or walk or really move around.

The kidney marker they look for that tells them how the kidneys are functioning called creatinine is very high. It has not gone up today but it also has not gone down. His urine output is still good so that’s a positive. It means his kidneys are still able to do their job even though they are under stress.

He also has mucositis which means the mucous membranes in his mouth are inflamed and he has painful sores in his mouth and throat. He is finding it hard to eat. Soft foods only otherwise he feels like his mouth is being torn apart. Even an ice cube or an orange or a Tim Bit is too hard. He says his mouth feels like it made of wet paper that tears from the slightest touch. The nurses are hand feeding him grapes. He can’t pick them up by himself. He is scared and feeling very vulnerable. I wish I could be there but I have to work. The burden on Spencer is heavy.

I’m also working on getting his second interview done for the approval process for MAID. It fell between the cracks. It should have been months ago but we never heard back. It’s not a road any of us want to go down but it’s something Garth wants available if he needs it. End stage non Hodgkin’s lymphoma can be nasty in the central nervous system. He has already lost sight in one eye and temporarily lost the ability to speak once already. He needs a wheelchair because of his wobbles and weakness. He is too high of a fall risk without it. Garth already has a hospital and community DNR in place. Right now he would want any other medical intervention necessary to help him live. But if the treatment fails and there are no other options for him he won’t want to be blind, lame, unable to communicate and in pain while waiting to die. This is what happens with blood cancers. Pippa died this way from her leukaemia. She was at home but she was blind, unable to speak or walk or eat. It was heartbreaking.

I have Hospice set up as well here in Parksville if that’s needed too. Although he wants to be at home if possible. Palliative care can help make that happen with any equipment needed as long as it’s safe for all involved.

We of course are hoping none of these things are needed but it’s better to be prepared. It’s damn hard preparing though. It makes my heart break.

March 17 2023

You will all find this pretty crazy. Garth has gained 60 lbs in fluid since Sunday. He now weighs 300 lbs. He says he now feels and looks like the stay puff marshmallow man. They say this is normal??? His numbers are now trending down for the kidney marker. This is good. Nephrology is satisfied with how he is doing and he likely won’t need to be transferred to the other hospital. But he is suffering terribly. His mouth is really sore and he can’t eat anymore. Just drink. He is very tired. He can barely move. Send more healing thoughts and prayers.

They are giving him a protein called albumin that will change the fluid balance and force the fluid back into his veins. They are also giving him a standard of care drug to treat the Acute Kidney Injury. But they have to do this slowly or it will overload his kidneys. A diuretic is too quick so it would be a shock to the already stressed Kidneys. This is how the Dr explained it to me when she called. It will take at least a week to go back to normal. Now that all the methyltrexate - the toxic chemo drug that caused this- is out of his system things are stabilizing. The other issue right now is his mouth and throat. Food makes the skin peel off. Even a grape. It’s another side effect of this drug. He can eat cheerios and milk, yogurt and cheese and non acidic drinks. He is pretty hungry he says. It should be better next cycle. They will reduce the dose so it’s a bit less toxic.

They won’t be repeating this treatment. Nephrology says he will end up with permanent kidney injury. They are working real hard to get the trial drug approved. They are 99% sure it will be now. But nothing is certain until it is.

Positive news on his Left eye. The optic nerve is becoming less inflamed. That can reduce the steroids from 100 mg prednisone to 80 and go from there hopefully.

March 18 2023

Spoke to Garth’s Dr last night. Again never good when the ward Dr calls at 9:00 on a Friday night.

He is at high risk of kidney damage which is why they are not continuing the treatment. The will keep a close eye on him as things reverse. His problems were compounded by the high dose of steroids. They are trying to keep brain inflammation down to prevent headaches and vomiting and his optic nerves from deteriorating. It’s so complex. 1-2 weeks for things to return to normal with his kidneys. In the mean time we wait to find out if the next treatment gets approved.

Pray that it does. It’s his last hope. The waiting is the worst part.

Mar 20 2023

He’s deflating. But still having trouble doing things. He’s up walking. They now think the stability issue was coming from the brain stem. He has not had a wobble since Friday he says. The oncologist said between the radiation on his brain and the one treatment of chemo they put a “tack weld” on progression of the disease for now. If he continues to trend in the right direction with his kidney function they are hoping to release him on Thursday. He needs to rest and let his body and kidneys recover before any further treatment. 4-6 weeks. They are still waiting for approval of the trial drug for compassionate use. He needs to still see the oncologist ophthalmologist 2x per week but is hoping to come to Parksville between. It more restful than his moms house.

April 2 2023

Gath was released from the hospital on Mar 23. Recovering at home. He starts back on radiation tomorrow. Wobbles are back. Cancer is marching on. That drug approval from Health Canada can’t come soon enough

April 3 2023

We are still waiting for Health Canada approval of the Pirtribrutinib. In the mean time the cancer keeps marching on. He was released from hospital Friday but his platlets are still low. and he an Spencer came home Saturday. Spencer had the flu or something and then Garth got symptoms. I had to take most of last week off to look after them both.

Garth is getting the wobbles again. They started on Wednesday when we went to the ophthalmologist in Duncan. He is not steady on his feet. On Friday morning he stumbled and fell. He wasn’t using any of his mobility aids and was up before us, stumbled and fell forward and hit his head on the edge of the couch. Because his platelets are low there is a low chance of some bleeding in his head. But he has no symptoms. They headed back this morning to Vancouver to gestate radiation. He got blood work and the combination of low platelets, the head bang and the radiation which lowers platelets concerned to ward Dr who checked him out for his wobbles. She wanted to admit him but there isn’t a bed. They got home around 5:30 and she called wanting him to go to ER to get a CAT scan because his blood work shows his platelets are still low. They went but there is at least a 6 hour wait just to be seen. They are both exhausted. Since he feels ok except for brain cancer symptoms and a really sore neck with arm and nerve pain from the fall they decided to go home and get rest. He will be back there tomorrow and get followed up then.

The good news is his left eye is doing great. He has almost 20/20 vision in it. His right eye is healing and not showing any symptoms of vascular overgrowth which would cause them to have to remove it. He got an eye patch for his right which helps his left eye to focus better. I ordered it on the day he lost his sight. Feb 15 Not realizing it was being hand tooled out of leather by an artist in Belarus. It finally came on Monday. Spencer gave his hair and beard a trim. It was a bit scraggly with bald patches on the sides where he had radiation as it’s growing in from chemo stopping in Feb. I think he really rocks this new look.

April 7 2023

Yesterday was another day from hell. Garth woke and got out of bed. He got more of that shooting nerve pain in his arms. Then his whole body got weak and he fell again. He called out to Spencer. Spencer called 911. Garth was able to get up and tried to make it outside. There are 5 steps up from the back door to the back yard. He got weak again and his body started shaking as if he was loosing control of the movement. He was still there when the first responders arrived unable to really move or get up. He was half way up the steps laying there in the pouring rain. It took 5 firemen to lift him up and get him to where the paramedics could help him. They were finally able to get him into the ambulance and off to Lions Gate Hospital ER for the second time this week. They were only interested in treating his pain. The did a great job at that getting it under control again but we’re not listening about the loss of body control. They would not reach out to BC Cancer. I was in Parksville. I called his radiologists office, I called his oncologists office. I called his neurosurgeons office. I called his councillor because Spencer was loosing it, nobody was listening about his loss of body control. I called the ward at BC Cancer. The nurses line at BC Cancer. No body really called back. The BC Cancer ward said they could not do anything without his Dr saying he needed to be admitted. The neurosurgeon needed a new referral to access his file at lions gate. Our Dr was away. All the Dr’s at BC Cancer were off. Thursday before the long weekend at the end on spring break. Medical ghost town. LGH didn’t care. He was released without a safety plan at 2:30 after being there for 7 hours. They headed across town to BC Cancer to try again to get him admitted. He was turned away. They debated going to the ER at VGH next door. We had a 3 way conference call with his councillor Maryann. She helped us make a safety plan. The is slim to no chance of Garth being admitted to any hospital in Vancouver over the weekend. Garth and Spencer are coming back here to Parksville tonight. It’s safer here, no stairs, wheelchair accessible, handicap Parking, access to Palliative and even emergency hospice, etc. We will hope for the best through the weekend. They will head back Tuesday morning and hope someone will listen. There are enough messages from me on everyone’s voicemail at BC Cancer that he can’t be ignored on Tuesday. Of course I had to take the day off again to manage all of this from here in Parksville. No way I could have focused on my clients health and well-being when my own families’ was in crisis. The good thing too was his family Dr off sent the referral even though she was out of town so Dr ? his neurosurgeon will be able to have a look at his file on Tuesday.

Hopefully this drug treatment can start soon. He missed 2 radiation treatments this week as he was being rushed to ER instead. So 3 next week, a pain management session, another PET scan and an appointment with oncologist, and Oncology ophthalmologist next week. Plus blood work. Come on Health Canada. Make a decision!!!!

No bleeding but he injured his neck and shoulders when he fell. He’s on huge amounts of hydromorophone. He cannot take anti inflammatory drugs because of the playlets. He cannot take muscle relaxers because of the hydromorophone. Spencer was great. He’s better now. He was just woken out of a deep sleep to go back to a hospital. I don’t know what we would do with out him. I would not be able to work.

April 8 2023

Another night in the ER. Spencer and Garth got home at 12:45 am. At 1:30 these weird full body tremors started. Called an ambulance. Still in ER in Nanaimo. Hopefully he can get admitted and transferred to BC Cancer or VGH. Spencer is exhausted. He’s at home. It’s 8:30 am. I’ve been up for 25 hours. We will probably tag team when he gets up.

He’s being admitted. Finally. 4 hospitals later. Getting a unit of blood. Checking for infection. Getting OT. He couldn’t manipulate his utensils to eat because his right hand was too weak and his left wrist has his transfusion line. All his other veins are blown. His red cell count, playlets and white cells are all low. He’s getting eye pain. Ischemia? Hoping the transfusion helps. Right now he needs to be stabilized so he can continue with treatment.

We are staying positive that the drug will be approved and he will respo nd and he will get the CAR T and go into remission for a while.

April 9 2023

He was admitted into the overflow ward at 11:30 PM last night with 8-10 patients in the one room after being in ER in the hall in front of the nurses desk 21 hours. Then having a pain crisis and really getting no sleep. He did sleep 8 hours solid in ER after the jerking and twitching of his body stopped at 5:30 AM Saturday morning. That must have exhausted him to sleep through the chaos in the ER.

Garth called me at 5:30 in the morning. He wanted me to come with his meds. He was having a pain crisis and there were not medicating him properly. I just couldn’t. I was too exhausted. I had been up with him at hospital all night and day so had not slept since 7:00 am Friday morning. Awake for 40 hours!!! I called after getting up at 11:30 and he wasn’t answering his phone. I finally called the hospital at 1:00. They said they had just picked him up off the floor. He was headed outside to get some air and clear his head after a rough pain night but did not get assistance. He says he was able to lower himself down and lay on the floor but who knows. I spoke to the Dr. Kovacks. on staff and we decided together to release Garth so he could manage his own pain meds. They were really good there but Garth wanted to be released. He needed sleep. They could not keep him against his will. Spencer went and got him. He is in bed. Spencer had to go back to hospital to get his Hydromorophone they forgot to give back to him. When he was gone Garth got up and stumbled to bathroom by himself even though we read him the riot act with a lot of arguing during it.

Whatever this disease is doing to him it’s messing up his head. He’s not bc all there. He is getting memory problems. He has big blanks about what’s happened then he will remember later and then forget again. It’s scaring him. And us. That’s the stubbornness. It’s denial, not stupidity. Denying you are deteriorating physically and mentally means it’s not happening. That’s why he is taking the risks of getting up then falling.

I’m glad they were here when it all went down. I doubt Spencer could have coped and Garth probably would not have gotten the same level of care or the blood transfusion. His threshold for transfusion is 80 now 10 above the normal of 70. So after explaining the rational for that about Garth’s sensitivity to ischemia and causing more damage to his right eye the ER Dr consented to the transfusion because it made good medical sense. He has radiation on Tuesday. I am going to leave more messages with BC Cancer and hopefully they will pay attention. Him needing a blood transfusion after being turned away will probably get there attention real quick. His neurosurgeon is going to check his scans on Tuesday. Hopefully he can get a steroid injection in his neck to stabilize the pain from that fall. I’ll work Monday Thursday and Friday. Move my Tuesday to Saturday. I have Wednesday off and he’s going to need an advocate. Hopefully by Friday Garth will be taking the new drug.

Spencer stayed home when I went to the hospital with Garth in the ambulance. He needed to not be in the middle of it again. I took a sleeping pill last night after a long hot bath when we got got home. Spencer came and got me at 9:00 pm. Got a really good sleep. That’s why there was no way I could drive there at 5:30 this morning and I wasn’t getting Spencer up. I’m making Turkey dinner to get some normal. It’s ready now. So gGarth can have a feast when he gets up. Shadow our dog is so sweet. She couldn’t settle until I put her on the bed with Garth. She is snuggled right up to him. She knows he needs protecting.

April 11 3023

Garth was admitted yesterday at Vancouver General under BC Cancer. He was very confused about where he was and what we were doing all day. I had a long talk with his oncologist finally. She thinks he is having seizures. He is unaware about safety. He has to have an alarm on his bed. Doesn’t know how to use the commode. Cannot really use his phone. He is not calling me back. He is sitting on his bed staring into space. I have called him 22 times today. He finally spoke to me on the hospital phone with the help of the nurse. He said he didn’t understand why I wasn’t there. He had to go to the bathroom and would call me back but he did not. That’s when I spoke to the nurse who also said he noticed a rapid decline since this morning. He knows his name and that he is in a hospital but not where. My heart is breaking. He didn’t understand procedure to use the commode is what the nurse told me. I had to take today off. I have barely slept since Thursday.

My hope is he will start this new drug Friday for sure, it will work and all of this decline will be reversible. If the drug doesn’t work … I don’t even want to go down that road.

Thanks Shelagh. Sorry to be a downer on your trip of a lifetime. I’m having another all-nighter. The hospital called. Garth was very agitated. He wanted to talk to me. But I wasn’t by my phone. They called Spencer for him instead. They were trying to charge his phone for him. But he became very combative verbally and wouldn’t give it to them. Spencer had to talk him down and convinced him it was a good idea. He kept asking for me to come. I called back while Spencer was talking to him. The nurse was a bit freaked out by his aggressive behaviour. When I showed up she was so thankful. He is a big man and I think he scared her. He wouldn’t let her take vitals or give him meds. I helped to settle him and she was able to help him. He’s resting again. We are in a ward room with 5 beds. They are trying to get him moved to a different room but it won’t be until tomorrow.

April 12 2023

I am sleeping on the end of his bed with my upper half on it and my lower half on a hard chair. I’m impressed I am able to catch a few winks but I d on’t want to leave. He is so vulnerable. He feels safe with me here. There are no words to describe what it it like seeing some one who was so strong and vital not be able to make people understand he has to go to the bathroom. We got it figured out what he needed and he calmed right down. I’m here still because his bed will be alarmed if I leave and that will set him off again. He is forgetting he needs help and at high risk of falling. He’s already fallen here. It’s a fall that put him in this pain crisis. At least admitted they got a handle on it. He is comfortable. That’s a blessing.

April 24 2013

Garth has been in Hospital since the last report. It has been touch and go situation during his stay. The new drug that they are giving him seems to be working. His altzheimers behaviour that he experienced has started to go away and his behaviour is almost back to normal. He is being released this week. He still has a high risk of falling so is pretty much Wheelchair bound. He cannot get the CART program until his cancer is in remission. Still hoping that the drug he is taking will do that and he can start the CART program soon.

April 30 2013

Garth has been at home in Parksville this past week . He is experiecing severe headaches and some stroke symptoms. Visited ER to get him checked out. They cannot do anything for him as he is too weak and they are aftaid that any treatment could cause worse problems. He is now back home to see if these problems cleau up .

May 9 2023 - Treatment Failed

t’s been a weird week. 2 more major events yesterday. The treatment has failed. The oncologist confirmed it Tuesday. Going to hospital is pointless. There is no treatment other than end of life care. Spencer and I were more ready for it than Garth. I called an ambulance both times because he was conscious but completely unresponsive,   or able to move or speak. This first time he would breath heavy to try and answer me. The second time, 31/2 hours later, his eyes were wide open but there was no response at all. I thought he had a massive stroke and it was over. But he snapped out of it and both times as with the past weekend was reasonably ok. He was doing paper work and totally normal between the 2 events. He’s out of it though again. Not understanding basic tasks. He called to make an appointment for MAID.  He talks to that Dr. Monday. Hopefully he will qualify and won’t be out of it when the appointment time comes. But they do a few times for people like Garth who are lucid, then not, then lucid again. 

There is no other road left to go down except end of life palliative care

I am publishing this Blog in the hope that it will help others that are in the same situation

Please donate if you feel this has been helpfull 

A go fund me page has been set up at:Go_fund_me. to help Maureen and Spencer through this trying period in their lives  

Thomas Murray, Ottawa, Canada