Nuts. My iPad told me to update and when I pushed the button it went to restore. I don’t remember my Apple ID and I haven’t backed it up for ages on my computer at home.
I may have lost some blogs I wanted to share with you and some precious notes I wrote for my kids. Crossing my fingers and hoping I didn’t lose it all.
Today I went for Vit C IV. Hoping I don’t develop pleural effusion (but at least I have the drain for it if I do). That’s always helped me before. I could use some energy, detoxing, and cancer killers on my side. I’m also taking soursop and doing coffee enemas to try to prolong my life.
The medicinal marijuana that finally arrived didn’t go over too well. It (1 part halluCinagin 10 parts CBD)
gave me a bad headache and my heart started beating irregularly. Not sure I want to take it again any time soon. It tastes like you are eating a skunk. Nasty.
Running out of battery on my iPhone. Gotta go. Will try to write tomorrow. I have more to tell you.
Saturday, August 19
Dr Death returned this morning. He requested my husband to attend. He said he understood I had a problem with the hydromorphine pill I took the night before and I refused to take the hydromorphine pump. He then continued to tell me I’m a difficult patient. I told him all I wanted for pain was medical marijuana and we were still having problem accessing the website that he told us to order from.
Again he wanted to make sure I was crystal clear that I was dying. I think I rolled my eyes at this point. Buddy, I told him. I’ve been dealing with this for 8 long years. I should have been dead a long time ago. I was in a bad state many times before like when I had surgery on my back and I promised myself if I could get up and walk again, I would live with no regrets. And I have no regrets. I went to Paris and painted in Monet’s Garden, I went to Whistler and got on a Rocky Mountaineer Train to Lake Louise, I took my kids travelling throughout the East Coast to Hopewell Rocks and to Martha’s Vineyards. I went to Rome, Venice, and Milan. I don’t have any regrets. He said that’s good because most people he has encountered at this stage of life never did the things they wanted to do before death. I also told him I wasn’t afraid of dying because I believe in eternal life. All I worry about is my children. He said that’s good to have spirituality and children are resilient. They will be fine.
Truthfully, I don’t want them to be sad because I’m not there with them. I don’t want them to grieve that I am dead. But how can I protect them from that? I want my kids to have beautiful, happy lives full of laughter.
Bobo than asked him if I could do something else on my bucket list items and travel like on a plane to B.C. He said New York City would probably be okay because it’s close, but a five hour plane ride would mean sitting for a long time and maybe riskier. If something were to go wrong and I didn’t have a “Do Not Resuscitate” in place and the airplane had to land for a medical emergency, then the passengers could sue my estate. I started laughing and said, “You think they’d be happier to have a corpse sitting next to them?” He said they probably would not even realize what happened to you. He also said he knew of a family who had to pay $60,000 to have the body brought back to Canada. “That was stupid”, I said. They should have cremated the body and brought it back in a bottle. That would have been cheaper. He looked at me quizzically and mulled it over a bit and said I was probably right.
Bobo then asked him about what he thought about treatments in Germany and Mexico and he said they were all a sham and they just take your money. What they do is not “statistically significant”. He said there were a lot of people in this area that tried it and cancer is not something anyone can cure. (I’m thinking maybe for treatments here but someone probably has something that works better). I told him about an 80 year old woman who was suppose to have her leg removed from here because of bone cancer and was fine after getting treatment there. He shrugged and said it’s just anecdotal.
Drs here are basically brainwashed into believing that only the Drug Companies know how to deal with illness. They don’t question it. They don’t check it out to see if it has merit. It’s like a broken record. They just bury their heads in the sand.
I went to see my kids play their final baseball game today. Frick was pitching and Frack was playing first base during some innings. They played well. I was happy to get outside and see them play but it took a lot of work to get me there. The wheelchair is heavy, I can barely walk, and it takes a lot of time to get my oxygen equipment in order to move me from place to place. But I made it to their final game on Saturday and was glad.
I wrote some blogs on my iPad and will be posting them today as I can only handle wifi for a short amount of time.
Let me introduce you to my newest Dr., Dr Death, from the palliative care team. He, as far as I can tell, wants to make REALLY SURE you understand that you are going to DIE, and it’s going to be soon. Get your affairs in order, and decide what you want to do about the “Do Not Resuscitate” orders because it’s not fair for your family to have to decide to pull your plug. “Well,” I told him, “I want to discuss that with my husband.” I already told him not to keep me on life support if I was a vegetable. My parents/sisters would keep me like this forever I’m afraid, but he would have to do the right thing. What would be the point waking up from something like that to be in more pain? If anyone one tried CPR on my bones right now, they’d crush me.
We talked about chemo. He said it probably would not be in my best interest to do that right now because it would probably kill me faster. Finally someone agrees with me.
I spoke to my oncologist and asked him 3 questions. Here were his responses.
1. If I take this chemo, what is the probability that it will help me? (20-30%)
2. How much longer will it extend my life? (An extra 1-2 months).
3. What is the probability that this chemo is going to harm me? (High given the fact I’m not walking around independently for more than 1/2 day).
So really folks, what’s the point in becoming bald from chemo, not getting out of bed because you’re too sick, and spending an extra one or two months alive feeling like shit? Forget it. Besides, this chemo (cousin) was the one that stopped my heart dead. It’s like being offered a ticket to death row to be executed right now and I’m not that nuts to do it. Chances are I’ll live longer doing nothing.
So that’s what I’m doing. I really can’t complain. I superseded the expectations of the medical system for 8 years. I should have been dead a long time ago. But God gave me extra time on this earth to do the stuff that made me really happy which was to teach, coach, do art, be with my family and travel. And I live with no regrets because even if my life is cut short, I had a really truly amazing and satisfying life. I had a career I loved. Going to work and getting paid for having a great time being with kids was immensely satisfying. I have two wonderful children and a husband who loves me. I have great friends, relatives, my mom and dad and sisters. What can be better than that? Life has been grand and I’m grateful.
Thursday, August 17
I had a bad night. I took a new drug, hydromorphine. In the wee early morning I had a horrible headache in my right eye and my left eye was seeing circles. One of my molars with a silver amalgam was hurting too. The next morning I was a zombie and could barely breathe. My legs hurt, one felt numb/paralyzed and I could barely squeeze my right hand.
My sister Angie freaked. She quickly called the nurse to come over ASAP and had her husband drive her kids to his parents house. She told me I wasn’t allowed to die at her house. I’m afraid her kids would be scarred for life. Then she called Bobo, Frick and Frack to get their asses over here. They drove here like the Dickens. Eventually I started coming out of my stupor, but it was hard to breathe. Wasn’t sure what was happening, but something was different.
Eventually my nurse showed up at 11:00. She wasn’t that informative when I started asking questions. My tube was no longer draining. That kind of freaked me out because I had about 500 to 700 ml coming out everyday and now there was nothing. Not a drop. “What happened?”, I asked her. “I don’t know,” she answered. “I’m not a Dr. The drain is no longer working.” “So what am I suppose to do now? , I asked. “Go to the hospital and get the left side drained?” She shrugged. “I’d like you to listen to my lungs and tell me what you hear?” I asked. She said she didn’t hear anything in my right lung and it probably collapsed. “Great”, I thought. Now I only have one lung working. Wonder how long you can live with one lung?” What was strange is that I felt like I could breathe better than before.
Sometimes when you take extra measures to save yourself, like this drain, you get more complications. I have to be very careful I don’t get get pneumonia (if fluid goes into my lungs instead of my stomach). I’m having difficulty drinking because the muscles in my chest to work my lungs are very weak and so are the muscles around my esophagus. So liquid goes into my lung instead of my stomach and then I’m coughing a very long time to get it out which really and truly exhausts me. I wonder if I can go back to the hospital and get this now defunct drain out of me so I can go have a bath. It’s kind of like the picc line I had when I was doing chemo… you can’t get it wet. No baths. Showers wrapped in Saran Wrap. Wonder if getting that tube removed would increase the odds of an infection or should I keep it in just in case it starts filling up again. Decisions. Sigh.
The nurse told me she would order me a hydromorphine pump for the pain. My side with the tube is uncomfortable but not bad. My tailbone is killing me because I think some of the bones are fusing together and I am in this bed all day. I have a mandrill butt. It’s so sore and the skin feels like elephant wrinkles. I’ve been putting on an assortment of creams. Diaper cream is the best. If I get a bed sore and it breaks open I’m in for a real treat. Problem is I can’t sleep in my right side cause of the drain and I can’t breathe and my left side hurts because my hip hurts and I fractured my pelvis. So I’m stuck forever lying on my deteriorating tailbone. CCAC did outfit me with a special pressurized mattresss for better distribution of weight which helps. The pain is worse at night. I don’t get much sleep and I hate using medications for pain. There are studies that claim hydromorphine accelerates cancer and puts the lungs in respiratory distress. That’s all I need. No thanks. I’ve been trying to get cannibus but haven’t been able to order anything as of yet. At least marijuana is a natural plant that helps with pain and respiratory problems without the adverse side effects.
August 1, 2013
Felt like I was drowning, so I asked my brother-in-law, Sal to take me to emergency at Mount Sinai. Unfortunately it was bad timing. Early evening isn’t ideal. Usually means a long wait.
There were 2 paramedics and four cops for one patient. Not sure what he did but the nurse told me not to sit near him. Then there was a young pregnant mother yelling at everyone. First she accused them of hiding her son in the back. Later she screamed she had to pick up her son at 5:15. The paramedics told her that her neighbour has her kid. Sal chucked and said that’s going to be rather hard since it was 7:48. Her mother and grandmother arrived a bit later and the daughter said why won’t they let me leave? They checked her anal cavity and everything else. Her relatives told her maybe if she behaved herself, they would let her live.
There was one guy who looked like he had flesh eating disease on his toe and another guy who looked like his appendix was in trouble. I felt sorry for him cause that looked painful.
Eventually I had my blood tested and a chest scan which revealed that my lungs were full of fluid, particularly the right side (which was partially collapsed due to an earlier radiation treatment). They told me I had lung mets. Because I was already on oxygen to breathe, they had to put me in one of their glass rooms where I spent the night. Otherwise I would have been in the hallway because they had no beds available in the hospital. They had to keep me until the next day to drain my lung.
It was in my glass compartment that I saw Jessie James across from me. His name? was tattooed on his arm amongst a variety of other tattoos. When Sal was in the hallway he asked him to come in and count his money. Sal thought he was blind because Jessie James was wearing big, black sunglasses on his face. So he started counted the money for him and one of the bills fell on the floor. Jessie told him he dropped one. Sal was speechless. Why was he counting the money for him if he wasn’t blind? So Sal returned his money and told him he had $230. Then he came to my room and told us what happened. My sister Angie arrived by then and we laughed.
Then another patient with an accent arrived next door screaming that Via Rail poisoned him. He put up quite an alarming fuss until a nurse came in and told him to stop being so loud. He protested and kept yelling. Jessie James overheard the conversation and ran out of his room and in a very big voice yelled, “SHUT UP!” The poor nurse then told Jessie to go back to his room and that he is NOT ALLOWED to YELL at patients. He said he was only trying to help. She ushered him back to his room.
Shortly thereafter the guy next door started puking his head off. It wasn’t ordinary puke either. It was seven unbelievably loud waterfalls. It sounded like his vomit was exploding all over the room. Thank heavens I couldn’t smell it or I would have died. Just hearing him barf was enough. That poor nurse had to change twice because of that patient. I seriously don’t know how the cleaners in the hospital and nurses do their jobs. I could never do it. Never, ever.
Bobo then came to visit with Frick and Frack. We told them about Jessie James and Bobo walked out over to his room, sat down and started talking to him. Figures. Frack kept peering through the curtains to see what was going on outside. Bobo went to buy Jessie James a hot chocolate (amongst other things) and quickly became Jessie James best friend. And you how I know that? Because Jessie came to my cubicle in the middle of the night and told me that Bobo was his best friend. That’s why.
Jessie also disappeared for some time and came back with about 10 packages of candies (like Jube Jubes) and hospital security staff on his tail. Earlier, Jessie could be seen walking the halls in nothing but a diaper….until the nurse caught him and told him he needed to put some clothes on. I didn’t see the diaper when I looked out the glass door because of a partition. I thought he was stark naked as he looked at me through the door.
At 2:00 in the morning, just as I finally started falling asleep, Jessie came to knock on my door and say, “God Bless”. Bobo told me he was Christian and had some sort of terminal liver disease.
During the early morning, I looked outside to see Jessie carrying two “Its a Boy” and “It’s a girl” balloon bouquet entering his room. “He must be a kleptomaniac,” I thought. No wonder he had three pairs of sunglasses in his room. Five minutes later, an angry woman ran into his room, grabbed the pink bouquet and said, “This one IS MINE”. I wonder if Jessie made it all the way to maternity to get those.
Eventually, I was sent to have my lung drained. They froze my back and put a needle near my shoulder and drained 1.26 litres of honey coloured fluid. Luckily I had my oxycocet pills on me because I didn’t want to feel the pain. I coughed a lot after the procedure trying to expand my lungs. Best case scenario was that the remaining fluid would dry up and I’d be okay. (But that’s not what happened).
Went back to the ER and waited until they had a room available. Both Jessie and I got a room at pretty much the same time. Jessie told me to tell Bobo to come visit him in Room 312 so they could play chess.
The decision to leave the hospital was an easy one. The old lady next to me in the semi-private room had a commode next to her because she could get to the bathroom. I think she broke her hip, but truthfully, she could get around much better than me. So when she had a dump, it was so intoxicating I would start to heave. I would jump out of my bed and try to run out the door. That’s kind of hard to do when you are attached to a bedside oxygen hose that was too short for my quick getaway. The only way out was with my portable oxygen tank which took some time to set up. I would look at my older sister with tears of in my eyes, pleading her to “Get me Outta Here”. She warned me once that something was happening but I didn’t get what she was getting at. But I did after that.
We couldn’t return to my room for hours because of the smell. It was that bad. Then I just wanted to leave.
Returned to the ER the following Thursday at 6:00 in the morning at the urging of who Bobo calls Dr Kavorkian, my palliative care dr in Vaughan. He gave me an expiry date. October 8 on the bell curve.
It was very quiet in the ER with only one other patient. I finally discovered what it would take for the ER department to move super fast like on TV. I sipped some water which went down the wrong way. I started coughing like crazy. Couldn’t catch my breathe. Security ran to the back and alerted everyone and suddenly I had an entourage of nurses and doctors around me. “What’s wrong?”, Someone asked me. “Can’t breathe” and all of the sudden I was whisked into a back glass room. “Cool” I thought, now this is fast service. Then the next thing I knew a crazy dr started digging into my arm with a needle to find a vein. She didn’t get it right away so she started moving it sideways, back and forth, back and forth as I’m screaming my head off.
She asked me why I was there. I told her my palliative Dr saw me last evening and I needed a permanent drain for my right lung because it was full of fluid. “Why didn’t you come last night?” she questioned. “What is your Drs name?” I didn’t want to get him in trouble so I told her I didn’t know, it was the first time I met him. She was mad.
Wasn’t looking to promising to get the procedure done, but they did manage to squeeze me in between two patients at 2:30. Drained 900 ml of more fluid. I now have a tube in my side between two ribs. I won’t be able to take baths anymore and if I get an infection I’m as good as dead, I think.
They discharged me quickly and told me to get out of the hospital. Germs.
Things are not looking so great. I’ve had a lot of fluid drained from my lung everyday by a home nurse. If it was only 300 ml, the nurse would only have to come every other day. But I’ve had 600, 700 and 500ml over the last few days. And to make things worse, when I drink water, it sometimes goes the wrong way. The nurse said my muscles in my esophagus aren’t working and neither are the muscles in my chest to breathe. So I would have to buy a thickener to put in my liquids by Nestle. My sister bought it. You know what’s in it? Corn starch and sugar. GMOs and sugar to feed my cancer. Lovely.
By the way, I had a CT Scan. I have a fractured pelvis and something is going on with my tailbone. It hurts. My ilium bone (left hip) is gone and is being taken over by soft tissue. Osteoporosis and cancer. My liver is still clean. I attribute that to the artesunate therapy I get from Germany. Really wish my lung was okay but it’s not. Time to face reality. I gave it a good run, but am suffering from battle fatigue. Eight years is a long time for a person in my condition. I know I would have been dead a lot sooner if I did conventional treatment. I just think my amalgam toxicity, mould exposure and Lyme disease didn’t help my immune system keep the cancer away. And stress didn’t help either.
I just worry about my kids and not being there to help them through the good times and bad. Too soon to lose their mother at their ages. It’s never a good time, really. Frack cried and said I wouldn’t be at his graduation and I wouldn’t be a grandmother and it wasn’t fair. Why couldn’t it have been somebody else? I told him his wife would probably still have a mother and she would be his children’s grandmother. I worry about him. He has trouble expressing himself verbally. I think Frick will be okay. She is so mature for her age and I know she will take care of Frack. It hurts me that I want to be there for them and I can’t. It really isn’t fair. My heart is broken.
Our Trip to St. Anne’s Spa
One of my favourite cousins, Franca, was visiting from Italy recently and we decided to go to St. Anne’s Spa overnight with her sister, Nora, her children Daniella and Josie and my sisters.
Our adventure began as soon as we got there. The oxygen tanks, pillows, suitcases, etc. were piled high on a large cart. Josie told everyone she would take me in the wheelchair. Unfortunately, the regular pathway had 4 steps and it was strewn with large flat rocks. The wheelchair would probably get stuck in between the cracks. So Josie said she had an idea. She saw some of the staff using an adjacent, smoother pathway at the end of the driveway. “Good, Let’s go that way then!”, I said. Josie asked me if I wanted to wear the seatbelt in the wheelchair. I said, “No”, I didn’t want to bother. That’s great foreshadowing for what’s coming up.
So she took me to the path, or rather hill, at the end of the drive and down we went faster, and faster and faster. Josie held me tight with her left hand, fearing I was going to topple over, driving the wheelchair with her right hand screaming, “Oh My God, Oh My God, Oh MY GAWDD!!! as we flew recklessly down the hill at neck break speed. “Let go!” I yelled at her. “LET GO” I repeated, laughing so hard I couldn’t breathe. The ground started levelling off. We made it. The two of us were laughing hysterically. We turned around to see what happened to Pina who was behind us with the cart full of oxygen tanks. All I saw was her butt sticking up in the air and the cart in a bush at the side of the path. That got me and Josie laughing even more. Then Angie came down the hill screaming “I told you guys to wait for me! I could have had this all on video if you listened to me!” Pina did not look happy. I imagine it wasn’t easy to go down a hill with a cart full of stuff chomping at the back of your calves. All I can say is that it’s a darn good thing one of the tanks didn’t land on its top or she would have been catapulted into space.
When we got to the reception room we were still laughing and told everyone about our nice trip down the hill. One of the kind reception workers said, “There is a sign in the parking lot that says we offer assistance, if needed”. I laughed and said “Are you kidding me? And miss that adventure. No way!”
We had a wonderful time. So nice to be with everyone and the staff there were exceptional. Food was fabulous and I even managed to gain some much needed weight! So glad I got this break. Felt so much better after breathing the country air and eating good food.