These are excerpts from the first month of my brain cancer shock. On May 12, 2020 I went to the doctor for a headache. By the 16th is was worse, so I went in the ambulance to Scarborough Grace Hospital and from there things get fuzzy.
They transferred me to St. Michael's Hospital in downtown. The following week I don't remember much of, but they tell me I had a couple of biopsies, multiple blood draws and a full round of chemotherapy. I don't remember any of it. So here's the Facebook posts from that time.
Worked hard for two weeks to understand what this dangerous odd cancer is. I did it stating new trying to remember just the name. Then I got to the point so i wouldn’t even try because ut is pointless.
By today i had made remarkable progress. I had empowered myself asking for people who care and the numbers were staggering. I took care if sorting some receipts and spoke openly with many folks to help them see that helpers are great and cornia19 is awful and nobody in either matters if the new discover of CNS Lymphoma can make you tell your family you have the potential to die untreated in 10 days or treated regularly For maybe 10 years.
In all I learned only a bit so far. Generally treatable but not curable; tied something to Epstein-Barr as well as spines (check!) and not really a “pure” type thing I conquered in a 2017, and much other nifty factoids.
Oh and one suggested it was tied to several thoughts about the paranormal. In retrospect I would read that again some day.
Seems too that the more often i get issues like confusion I get angry. Trying to give myself some breaks though. Two weeks ago hubby said I had to go to the hospital simply for that and it was the last time i got a hug. And of course we had to tell a thousand families and a million friends that on some level the shit has hit the fan. I weep when i think of the girl who is scared but faithful and loving, #2 i could have dreamed was a 100% screwup like her mom, the teenager stinker son i need to bring into funtional adulthood and two amazingly beautiful granddaughters i can maybe never hold again. I cant reassure my mom not to worry and very sincerely help her see for decades i might have been suicidal but haven’t been down those wants in a couple decades. I can’t help Carol because she has always been better than me. I can’t reconnect on a sister level i love as a daughter of my own. I can’t be wonderful to dad’s ex as i know she isn’t into that sort of thing. And i want my daddy’s creamy ashes and has no idea who has them. Not much chance of learning deeply about my inlaws On top of that is how much i love the kid who i have long believed is a reincarnation of my dead son and explain it to folks
And of course all I have are trying to be patient to the man i love and we know i suck at that already. Bad news all - i need to add tags to make sure those who need to see this.
Immediate next step is to start my new book research, find my ideas if there are those who can replace my “leadership” and work just a bit harder on genealogy.
Of corse by tomorrow since it has already been two weeks.
Please remember i will never quit having a sense of humour. I can actually be fun.
Sometime tomorrow I will be back in the deeluxx apartment in our skyyy fo awhile. Someone bring cake
Love you guys. Remember emoticons don’t work for me right now. Words do.
Such a crazy day I haven't yet read here but I have a few minutes to say something.
I start active chemo at 8am tomorrow back at the hospital then come home that afternoon. At my home I have a ton of people I can call on for anything, so I am well taken care of. Don't worry.
Over the long haul, there is lots to be learned. Doug and I have different reactions. His is hopeful and supportive and I love the learning and we haven't been communicating well enough. I produce the facts and marvel in them and the TECHNICAL is that it isn't forever curable. He supports making sure the NEXT STEP works. I need to support his faith that we can do this. I of course know we can! I just know we can't make be last til I'm 100 LOL
I will get to more explanation but not tonight. TIme to slow down. Amazing afternoon with my Phyllis-Art Tomlinson here helped a ton.
More when I can. Love you guys.
June 14, 2020 42 hours in and for this hospital, and my Toronto hospitals in general, it’s a break even point. In any US hospitals from fancy to military, there would have been at least two RNs fired and the whole floor I am on would be shut down for minor repairs and deep cleaning— even during COVID19.
I am giving 5 levels on the reviews I think. And full disclosure, much of this (strongly edited) will become an article for www.mountaineer.news
. Michael Morehead has made me feel like a fairy godmother there .
Ok back to ratings. They are wow, good, meh, yellow (like a caution light), and wtf. So far overall since 2000 Toronto gets a meh. This trip as well, at least so far.
Two wows are a big private room and en-suite with some natural light, and an employee who picked up one of my free books last time as a thank you. She came to my room to tell me she loved the (scalded milk I can’t remember the name of) potato and wanted to know what she should try next. After discussion I chose green bean casserole. The she has FRESH julieanne beans. The woman is going to have an orgazam. Down home Green Bean Cassarole is typical Sunday. Here it is declared an “amazing foreign delight” which cracks me up. Anyway, massive wow points for this lady. She will be back before I am discharged and asks to bring her copy in for an autograph. Good stuff.
Good rating goes to food. While it is nearly impossible to make changes that aren’t normal like Halal or Jewis or Diabetic, the actual taste is really better than at any hospital I have been in. Could use a bit more serving size and a bread option but overall it is amazing. Unfortunately they run equal to Scarborough General in idiocy plating. Printed menu sheet has allergy danger stamped next to nut and fruit dangers—right next to the peanut butter for toast and juice and the fruit stuff. Here’s a thought- if it’s marked as a cation and you don’t serve toast, rethink this.
Meh for non-medical employees. They are generally working the same hours as nurses with zero appreciation. Overall much more empathy and enthusiasm than nurses and others.
Yellow for housekeeping. I changed my own linens once on the last visit (the only time in my two week stay). Ive been here2 days and they haven’t given me so much as a facecloth. Nobody has mopped in my room. It’s kind of scary. You have to wear a mask outside your room for the pandemic but there are no precautions for dropped plastic tops or discarded bandaids.
The biggie though is wtf. From prior Toronto stays i was aware of the massive lack of respect and empathy but this is worse. I need to bring in my good nurse friends to kick some butt here. Each shift has one RN “helping” the patient and two “clinical assistant”s on 12 hour shifts. Yesterday The luck of the draw gave me the two worst. I knew that from last month. I call them (so far not to thier faces) Nurse Nutso and Bitchnurse Junior.
Nurse Nutso cam INTO my room with only me in it and told me to wear a mask. She then left. No reason for the waddle-by masking. If someone was coming in to do something I completely understand. This I didn’t. I complied and told her some day I would drop by her home for no reason and make her put on a mask. She wasn’t amused.
Part of the process is putting drops in my eyes twice a day. In the past staff has trusted me to do the dropping myself. These two didn’t. I’m a 58 year old everything survivor, you would think I could be trusted for two drops in each eye. It’s a bit tricky to do with my necks degeneration and stenosis. Flexibility to look up is very limited. This is assumingly in my file. It’s been like this since the 11/17 wreck. Nutso was frustrated I couldn’t put my face up further and pushed with one hand and quickly put drops in. I was caught by surprise and pain and was still stunned as she left quickly. Later, here comes Junior (who i say wobbles because that’s how she walks not a weight shaming) with the eye drops. I wasn’t worried- how could this happen again when it had only happened once, right?
So without even a hesitation or warning she pushed my head back. I let loose a scream of pain that made the denentia gerontology patients look demure. I begged her to not touch me-and to let me do my own drops. I’m sure the tears washed them out. Through weeping i told her about the issue and she rolled her eyes like she thought I was lying and I requested pain meds (already authorized as needed and unlimited dulauded sounded pretty good right then). Four requests and two hours later it finally arrived. So did a quick injection in my arm I didn’t know was coming , gave no permission for -that I remembered at least- and i have no idea what it contained.
In the glorious south I would file criminal charges on both RNs. If that was rejected I would work to my death to have licensed and other things blocked for life and sue civil punishments. I don’t think I can do anything up here. Heck the patient liaison only works 830-430 M-F and it is currently Saturday morning. I also asked the floor admin if there was a case manager or social worker I could reach out to. She said she new they “have one” but didn’t know where.
Have ONE Somewhere in this huge huge 400+ bed hospital and trauma center maybe they can find her. She offered religious support and looking at the pentagram on my hand I politically declined.
Big time wtf, eh? I’m mocking the Canadian voice here.
The good news is that it is 815am. A great breakfast should magically appear in about an hour. Complete with at least one fruit. And I am told the hot water was turned on at 8 so I should soon be able to use some.
June 15, 2020 Just finished the third of the 4 chemo drugs. Feeling a little more winded and heavy so it must be strong. I read somewhere that all of these drugs are like 4 times normal strength and that is part of why I have to do it as an inpatient. As soon as the swelling goes down in my feet I can have the last one.
Methotrexate is a nasty drug at 4x normal. In small doses it is great for a wide amount of autoimmune diseases, most of which I also apparently have, so that will be much better in about 3 months. But in the meantime it's tough. First of all they can't give it unless the swelling in my feet goes away. It does now (finally) but creeps back over the few hours. If the drug gets into that fluid it basically becomes a poison and kills from the inside out. So I'm here til we get the drug administers (takes just a few hours then they will keep an eye on me at least one night before sending me home. Best case scenario I go home Tuesday, but realistically my bet is THursday morning.
Taking this medication the wrong way can cause serious side effects, including death. I'm not going out that way! Nausea, vomiting, stomach pain, drowsiness, dizziness, hair loss, mouth sores, diarrhea, signs of anemia (such as unusual tiredness, pale skin), signs of liver problems (such as dark urine, persistent nausea/vomiting, stomach/abdominal pain, yellowing eyes/skin), easy bruising/bleeding, black stools, enlarged glands/lymph nodes, bone pain, unusual pain and discoloration of the skin, signs of kidney problems (such as change in the amount of urine), dry cough, muscle weakness, weakness on one side of the body, neck stiffness, severe headache, vision changes, irregular heartbeat, mental/mood changes, seizures,and seriously lower ability to fight infections. For that immunity issue a guy will come to my home and give me a shot in the belly for a couple days after I get home. I have pills and liquids for pretty much anything.
No driving for me, and for now no going anyplace alone. "Outpatient" doctor appointments are via video or plain old phone. Convincing my GP to write a script for a crazy strong, highly addictive pain killer will be a challenge.
I will eventually post about the reality of my world, but I don't have the energy right now. Suffice it to say everyone compliments on my strength and ability to deal with the physical stuff. In reality, the ONLY thing I have the strength in is the really severely shortened life span even if things go 100%. I may have to make the decision on stem cell treatment at Princess Margaret Hospital. It's one of the 5 best in the world. I sincerely ask that you read up on the process. I don't know if I have what it takes to do it. And if you havent already, read about CNS (Central Nervous System) Lymphoma. The word Lymphoma is sort of not the right type but the why is confusing and not really an issue on treatment.
In January I had no signs of cancer at all. I had one more year of negative tests and we could relax about it returning. It didn't return. I got a freaky very rare cancer out of nowhere that probably started around mid April to May first. By May 12 I was aware of extra headaches and talked to my GP. We all agreed it was likely stress. Five days later I was admitted to a cancer ward and getting chemo. We finally got to see a photo of the brain scan showing a tumor and swelled area about a quarter of the brain big. The first week my memory is gone ( I swore I hadn't had chemo but I had pretty much every test on earth), I lost the ability to communicate, and woke up every day with no idea where I was or why. It started to get better quickly, but the PTSD of the shock combined with the wreck stuff, losing my dad and God knows what else keep me in therapy twice a month. I also have a speech therapist coming for awhile to help relearn how to remember and use words. And of course so much more. The biggest is someone I love and respect may soon cross the scientist version of the Rainbow Bridge. Possibly at the same time as my Pepper. No question it's going to get worse before it gets better. You will see how strong and brave I really aren't. Your love and support mean everything to me and I am grateful