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.

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IPad problems.

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.

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.

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.

 

 

Go Figure

Good News.

I just got ALL my test results from my CarePath nurse which I requested and I’m glad I did because I got some new information.

I always ask for a copy of my report/scans when I leave my doctors office. In January, I was given only one page, that my brain wasn’t bleeding.  Just like I thought…my cavernous hemangioma was occupying some land in my right cerebellum.

What I didn’t get (or was told) at that appointment was that that thing in my neck that they wanted to zap (cancerous para-spinal tissue) was GONE!  Just like my German doctor said…It wasn’t cancer .

Remember?  Here they wanted me in a clinical trial to get rid of “the cancer” near C6  (2 high dose treatments that had a 10% chance of breaking my neck).

Go figure.

So what is a poor slop suppose to do if they didn’t have this same service as me where You can request ALL your documents?  How do they know if they were giving all the facts?

Makes you wonder.

P.S.  I still have an interesting tale to tell you, but I’m waiting for the right time to spill the beans.

 

 

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!

 

 

Never A F**n Dull Moment

So today I went to see my radiologist all ready to hear the words that my bone marrow was full of cancer (because that’s what usually happens when I come back from having treatment in Germany).

But that wasn’t what he said.  He said everything is stable but your BRAIN IS BLEEDING!

Really?  Seriously?  WTF?

Do you have headaches?  Well, yes, actually I had one this morning.

I’m going to send you to have an urgent brain MRI.  Hopefully you will get one some time next week.  But if you have any more headaches, call me.

Forget that shit.  If I wake up and have another headache I’m going to check myself into Emergency where I will have a scan done right then and there.  And what if I don’t wake up?  Should I be telling my daughter that if I don’t wake up tomorrow, to call for an ambulance.  That will probably freak her out.

My radiation Dr. had me do some tests to see how coordinated I was.  Hey, this reminds me of when I had a stroke”, I told him.  “Let me guess, is the area I’m bleeding in happen to be in the right cerebellum?”  “Yes,” he answered, a bit shocked.  “Well, that’s where I have a hemangioma”, I told him.  “Where did you have that scan done?” he asked.  “Right here”, I told him, “In April 2010”.  He disappeared for a moment and found my scan on the computer and said that made him feel a little bit better.  But then he also asked why wasn’t this picked up before?

I sure don’t have the answer to that.  But here is my question. If my scan was done on December 23rd and it was now December 28, why the heck didn’t anyone phone me and tell me before now?  Honestly if my brain was bleeding all that time, I probably should have been dead by now.  But I’m not dead.  I am very much alive.  And therefore I am not going to panic about it because that serves no purpose.  When this passes, this is going on record as another time there was a mistake.   That will be mistake #6.  But who’s counting?

So is my brain bleeding or is this something that’s been there a while?  Tune in to the saga next week when I go for my MRI.