Gotta Love That Lorazepan

So what shall we talk about today?

How about how some of my roommates keep on croaking?

In my corner suite, I had a lovely 18 year old girl roommate for a while called Ally. She was a sweetheart but decided to get the hell out of here on Saturday cause she said she’d been here 6 weeks and the drs still weren’t helping her. According to her blood work she was getting worse and so she discharged herself. She used to be a Sick Kids hospital patient all her life because she was born with a genetic disease where her body creates benign tumours. She said the hospital food and care was much better over there. I don’t blame her from leaving. She told me the room was haunted and she was glad she had a roommate cause there were strange noises in the night and bangs and sometimes a white haired lady named Gertrude would come in and scare the hell out of her.

Well Gertrude did in fact show up early the next morning, so I rang the call button and told her there was a wanderer in my room.

It’s an interesting floor, this one. The north side has dementia patients who often escape from their rooms. Every once in a while you here code white or code yellow 10th floor and a room number and you know ones escaped. Can’t remember which one means the escapee is violent but Bobo looked outside my room one time and was laughing because this frail old lady was swatting at a nurse with her hands because she didn’t want to go back to her room. There is also an old guy with two canes that likes to go in other peoples rooms.

So when Ally left on Saturday I got a new roommate, a Greek lady. My Greek friend Cathy stayed overnight and was talking to the woman’s husband. I took a sleeping pill and was out like a light. Good thing too cause Cathy told me the next morning that the woman next door to me died. My respirologist came looking for me during the night and ended up at her bedside. Apparently her heart was bleeding into her lung so they told her husband to call their sons and they took her to a private room. Cathy asked me if I heard everything that happened last night.

Nope.

Not a thing.

Gotta love that Lorazepan,

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Sept 26 Thoracentesis Gone Bad

I was suppose to go to Mount Sinai on September 26 for a simple day surgery to drain my left lung as it was getting pretty filled up with fluid. It’s called a Thoracentesis. They freeze your back and stick a needle to aspirate the fluid in the pleural cavity. They can only take 1 -1 1/2 litres at a time. For me, even 500 ml causes me distress. My lungs have a hard time recovering when the airways in my lungs open up. I cough up slimy mucus for hours and it’s totally exhausting.

Unfortunately, after the procedure, I never left the hospital. I felt worse and was coughing up a storm. Vitals weren’t good so I ended up in the ER all night. Skipped the triage and went right to a special area for a nurse to keep an eye on me. I had a special oxygen mask that was hydrating saline and it was set at an oxygen level of 10. At home I had it at 2.

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The ER is never boring. The guy next to me ended up having some kind of infection and his family was all eating from the same food containers with him so they all got quarantined somewhere else.

Then a man with pancreatic cancer and his family were placed next to me. He passed away some time during the night. Part of his religion was that the doctors were to do 2 hours of CPR before they could declare him dead. Then they had to put his body on ice because he was suppose to be buried within an hour. Bobo said two men in black came to get him. There was a huge pile of water underneath the bed afterwards.

The next day I was transferred to the 10th Floor. I think it’s for Acute Care patients, internal medicine and there is a lock on the door to keep some of the patients in here because they have Alzheimer’s and tend to wander around.

I was put in Room 39 B but shortly after I got there the Italian woman next to me coded. She received lots of bags of plasma earlier; looked like transfusions. She didn’t want to use the bed pan and started walking to the washroom with her walker. On her way back she got into trouble. The nurse came in and said she should never have gotten out of bed. Her adult son and husband had her on the commode and tried to get her back on the bed but she passed out. The nurse started screaming, “Hurry, pick her up and put her in the bed”. They grabbed her by the knees and under her arms and by then twelve people started running into the room. Some of them were responsible for getting me out of there as fast as possible but I was hooked up to oxygen which made things more difficult. I was whisked into the hallway as bedlam took place behind me.

My friend Cathy and her sister-in-law Emily were with me that night and they recognized one of the nurses from a Greek wedding they went to in Montreal. Emily told her that I was a friend of hers and to take good care of me.

The oxygen tank didn’t have much air supply in it and I soon was running out of oxygen so they put me in a private room! Hurray! And I got to spend the night there for free! The next day they put me back in my old room but I got the window because the Italian lady went to ICU. They had to take her husband to emerg because I think he went into shock and I think her son almost passed out. We found out she was ok after all that.

Dr. Death Revisited

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.

Dr. Death

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.

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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.

 

Bad night

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.

Parasites

Well, I got most of my results today.  As expected things are not great.  I figured that anyway cause I’m feeling quite shitty.  Areas that are in trouble include my:

pancreas

gallbladder

liver

kidney

central nervous system

digestive system

thyroid

Hippothalamus/brain

cortisol levels

and I think my adrenal glands but I wasn’t sure what he said about that.   Basically my immune system has tanked.

Anyhow, he confirmed the parasites are what’s causing this problem and my amalgam fillings are feeding the worms.   My eight amalgams are decaying and I couldn’t fix them because I was taking a bisphosphonate to support my bones.  It causes necrosis of the jaw when having dental work done so I wanted to be off it for several months before I undertook the procedure. However, given the toxic state I am in, I cannot take them out as it could probably kill me.  Also my mouldy house didn’t help matters.

I guess the only real good news is when I asked him if my fluid filled lungs are because of cancer he said, “No, it’s because of the parasites.”   “Good”, I said, “That’s what I thought because my oncologist wants me to go on chemo because my lungs are full of cancer and my radiation dr told me if I start to see double to phone him so he can radiate my brain.   Oh and my family dr thinks those aren’t worms but my intestines are coming out of me.”

He just looked at me and didn’t say a word.

Sometimes it’s best to say nothing, I guess.

Today, I had a colon hydrotherapy which made me feel better.  Then 8 minutes with a biophoton machine on my brain and 8 minutes on my lungs.  I must say my asthmatic lungs felt much better after that.

Tomorrow I’m going to have my Global Diagnostic test which is when they hook me up to a very expensive Swiss computer that checks the frequencies of each body part and organ and tries to fix whatever deficiencies it finds.  It also gives you a readout of what is and is not working.  It’s very elaborate and I can’t wait to see the results..

They are also going to oxygenate my blood through an ozone IV where my blood is taken out, irradiated, and then brought back to me.  That will help all my cells get the oxygen it needs.  My blood is thick and black and that’s not good.

Getting stem cells injected in my butt.  They are putting other stuff I need in my other IVs because I had a problem with Bobo giving me needles in the wrong spot.   Looks like I have some nerve damage as a result   I’m having difficulty lifting up my left leg.   Sometimes I literally have to pick it up to move it when getting in and out of the car.  But I drive a Jaguar now and I must do it.  Fuck my leg.  It needs to behave so I can have some fun.

Anyhow, I’m really tired and must go now because I have to be at the clinic by 8:30.

Diagnostic Testing… Now Waiting for Results

Dear friends,

Today I did most of my diagnostic testing (eye photo, blood work, hands/feet photos, urine and saliva tests).   Tomorrow I will find out if they can help me.

I’m worried.  I am in bad shape.  Hard to sleep at night when I’m constantly coughing and spitting up mucus.  Don’t know if that parasite cleanse was a good or bad idea.  Don’t know if my gut is reparable as so many food items are causing me grief and I don’t know if my body can handle the treament protocol given my drastic weight loss.  Also worried that my cancer may be active again and what do I do about it if it is in my lungs (as my oncologist keeps insisting).  One thing for sure.  Not enough oxygen in my blood as it was black when I glanced at it in the vial.   Shit.

I told Dr Mariam that I stopped taking the injections they gave me since January because I thought my husband hit a nerve a couple of times and I was having trouble lifting up my left leg as a result.  She told me I was probably right and that she would try to put some of the injections they were going to give me in my IV instead.  However, some of the stem cell ones had to be injected in the butt.  That concerns me.

Its 1:30 in the morning   Time for bed.  I see Dr Sommer and Dr Mariam at 2:00 tomorrow so I can sleep in.

🙏Needing some prayers🙏

Koln (Cologne, Germany)

 

Sunday, May 21, 2017

One of my former church choir directors, Steven Handrigan, told us about this fabulous Cathdral in Cologne, Germany after he took his students from the St. Mikes Choir School to sing there.  You could tell it was a church that really impressed him by the gleam in his eyes every time he talked about it.  So I decided it would have to be on my bucket list.  So off I went with Maria and Falitza.

Here is some of what we saw.

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It was enormously tall and black.  A stark contrast from the Duomo in Milan that was also very intricate, but pristine white.

The stain glass windows inside were most colourful and bold depicting pictures of Mary, Christ and the apostles.  They were quite beautiful.

Street painters.

And a homeless duck… with a pint of German beer of course!

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Koblenz

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Decided to visit a place called Koblenz before we head off to Cologne or koln.

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It was really something.  We took a cable car to the Ehrenbreitstein Fortress and saw the most magnificent view of the Rhine River overlooking the German Corner (Deitsches Eck).  That is where two rivers join.  It was neat watching huge boats get swept away at the corner trying to get up the next river.

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The fortress was quite grand too but it required a lot of walking which I am not in the best of health to do right now.  It took a lot out of me and I had to take a painkiller by the time we got to a restaurant where we could rest and eat.

I’ve come to the conclusion that there are really no gluten free options at any restaurants in Germany. I’m stuck pretty much just eating salad and the odd soup if I can find one with no milk, cheese, tomatoes or wheat.  However the view we had from the outside, then the inside (it was cold and we moved) was awesome.

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Maria had her pint of German beer (she claims she will have one everyday until her treatment starts and then she will be good).

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The fortress was immense.  It guarded the waterways and railway lines.  Here are some pics.

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Really could have used my heating pad after that long walk but I kind of blew it up in Weisbaden the night before.  I plugged it in and put it in my pillow to warm it up as I went to the bathroom to brush my teeth.  When I got back the thing was melting on my pillow.   Didn’t know the voltage was so high in Europe that even with a converter, it would overheat the heating pad.  The metal coils were protruding through the plastic cover. I was lucky I didn’t plug it in and take a bath because it would surely have caused a fire by the time I got back.  I didn’t know what to do with the smelly burning plastic thing.  I ended up shoving it on the shower floor so it would cool and disposed it in the morning.

Good thing I didn’t burn the hotel down.

 

 

Oh My Bleeding Brain, Not!

Had a spinal MRI on December 23rd.  So at my appointment on the 28th of December, I was told my cancer in my neck/spine seemed to be stable, but my brain was bleeding.

That made me think…hmmm had that test on December 23rd, if my brain was in fact bleeding, shouldn’t I be dead?  Something is wrong here.

I told my radiation dr that it was probably the hemangioma I had in my brain which was found when I had a stroke.  He felt “better” about that, but he still ordered me an emergency MRI which I had on Monday, 17 days later because he had not seen it on any of my previous scans.

The results?  My brain is not bleeding.  They just noticed my cavernous hemangioma on this prior scan and it hasn’t grown or changed since 2012 when I had my stroke.

Oh, and I don’t have any brain mets either.  Glad to hear that there isn’t anything in my brain but what was always in there in the first place.  However,  I really am not happy I had to have that MRI because the contrast dye they give you goes through the blood-brain barrier and I’m not sure how to get it out!  Who knows what chemicals I’ve got lurking in my bloody brain now?  EEEK!

Thank God they found nothing because I was really concerned they were going to take my drivers license away and I don’t think I could handle that.  I would go nuts.

I was already plotting what I was going to do if I got bad news.  I was going to start a Go Fund Me campaign, get on a plane, and go right back to Germany for a different cancer therapy… probably a month of Curcumin IV (I’m pretty sure that goes through the blood brain barrier).  But I’m stable and don’t have to think about it now.  I’m convinced your prayers helped and you know who you are!

I have decided on thing though.  I don’t ever want to do chemo (taxol) again because I know it will kill me and I don’t think radiation is the answer either as I’ve maxed out.

I am done with that.  The answer is elsewhere.  I can’t do treatment here.  It doesn’t work for me.  Grateful I am doing well.  Big relief.  Sigh.

I don’t see any doctors for 3 months now.  Thank heavens.  I can do without the stress.  No more scanxiety till April.  Hurray!