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.

My Slumpy Day

Dark SideMy Slumpy Day

After getting my head out of a bad space before my awesome trip to British Columbia, I am back in the gutter once again.  Having cancer it’s like being on a roller coaster and I’m on the downside right now.

restaurant serviceIt started on Friday at my oncologist appointment.  He was being followed by two new recruits.  Told my nurse that having shots at a Scarborough clinic instead of PMH was not going well.  The first guy didn’t get it right and I didn’t like being stabbed more than once.  And the next time when I asked for someone who knew how to administer this kind of shot in the stomach, they gave me a nurse who told me she was shocked at how big the needle was. She said she gave large needles to pregnant women in the hospitals before but this needle was much bigger than that and she didn’t really know what to do with it. That really made my confidence soar.  Anticipating disaster before a needle is always fun.  She took her time inserting it in me which was torture and apologized profusely throughout the procedure.  Not going back.  I need someone who knows what they are doing.  Basically was told too bad because they are doing needles at PMH anymore. 

I wasn’t sure I needed that shot anyway because now that I’m taking tamoxifen once again, that should stop my periods from coming back. My onc. agreed and I have one less shot going in my stomach..the big needle with the hollowed out center for a pellet to go shooting in there.  Unfortunately tamoxifen is the drug that once gave me a stroke, so I’m not exactly happy to be on this drug again.  However it does help your bones, not like the other hormone drugs that wreck your bones and give you osteoporosis.  And guess what?  Since PMH is no longer doing my needles, my husband is now going to learn how to give me the other shot in the stomach.  Do you believe this?  Cutbacks.  We can no longer provide you with someone to do your needles, so guess what, you are on your own!  Bullshit.  That is what it is. 

12109198_10207750090212940_1271571996916088075_nI asked my oncologist if he would mind writing me a letter so that I could get immunotherapy treatment in Germany.  He gave me a letter all right. It’s stated quite in emphatically in BOLD that he did not support what I was doing in Germany, that there was no scientific proof that it works, nor did he recommend the treatment.  In other words getting support from OHIP for my medical costs is not going to happen.  Immunotherapy treatment is about $50,000.00, but it can cure me while everything else can just stunt the lousy cancer until it finds its way to grow back again.  There are ZERO per cent studies being done on my type of cancer…apparently only 7 per cent of cancer research funds are allotted to metastatic cancer patients….guess they figure we are going to die anyway, so what’s the use?  Instead the goofballs use the stupid money they get for ads telling people to check their breasts for lumps.  Idiots.  And what really pisses me off about the Pink Ribbon Campaigns is that they keep touting they are so close to finding a cure.  Really?  I don’t think so.  How many years have they been searching for a cure?  Still using the same drugs developed in the war to kill soldiers to kill cancer (and the patients too).  The FDA is making too much money…something like $270,000 for 5 years per patient.  Do they really want to find a cure?  Really?  Sorry for my skepticism…. I’m on a whirl.

11254572_10206274324069706_4652111085599174120_nOn top of all this, I’m currently battling Revenue Canada who is not acknowledging my medical costs from the last two times I went to Germany. I don’t know if you have ever dealt with Revenue Canada but trying to call them on the phone is hell. Unless you phone between 8:15 to 8:30 in the morning you will NOT get through. However if you go to a nearby government office you can pick up one of their phones and get a direct line. So this is exactly what I did. I finally talked to a human being to see if they received my family doctor’s note and if they could re-examine my claim. She couldn’t do anything because it was on my husband’s taxes and she couldn’t give me any info information about it. I told her it was ridiculous because it was my medical claims that they were disputing. So she said my husband would have to phone Revenue Canada (at 8:15 am) and maybe he will get through. Like he has time to keep dialing Revenue Canada all day while he’s at work.  It’s so frustrating. Been 3 days.  Didn’t get through.  Nearest person to talk to us is in Sudbury which I would be happy to drive over there and do a sit in, but you better believe it will be fortified against intruders like me. 

Dealing with Revenue Canada is kind of like dealing with Bell Canada…..you get the runaround. I have also been after them (Bell) for the last four months for telephone and Internet service. I told them I was paying too much money for my Internet service for what I was getting, so they offered me a new modem. After the worker left, a new nightmare began because he cut the cord to my telephone line and disappeared for the day.  I had no phone and then had to call them on my cell phone for 1 1/2 hours to get them to send someone else to fix my new problem. Then I had an ugly temporary wire hanging between my house and my next-door neighbors house. I had to phone Bell about 65 times to ask them to bury the wire.  Finally it’s been done, but only after relentlessly calling them.  I thought I was going to lose my mind.

Further woes include our fairly new fridge which is doing some strange things…it’s still under warranty but they can’t send someone to fix it until I’m back from Germany. 

11703365_1087861577909176_5585447011518671387_nAnd I am heart-broken because one of my friends (Lynn Manwar) with metastatic breast cancer passed away.  She also refused chemo when she got METS and felt it would have killed her sooner if she had done it.  I was supposed to go with her to a lunch gala on Sunday in support of breast cancer.  She was a part of the unveiling of calendar in which she was dressed in a beautiful gala dress as she was one of the models.  She invited me to go with her, but I told her that I wasn’t sure it would be a good idea to go because I was returning from British Columbia at 11 o’clock Saturday night and I might be too tired.  She told me not to worry because there were plenty of other events like this and I could go to the next one with her.

I was shocked when I went on Facebook to look for postings of the luncheon I missed and there was nothing.  Instead of seeing her smiling face, what I saw was a posting from her brother informing us on Facebook that she had died.  Her aunt told me at the visitation that they were all putting on their dresses on for the event when they got a call from the hospital telling them to get there fast.  Needless to say, there was an empty table at the event. 

This all really sucks.  It’s so painful to see people we know and like die of this dreaded disease.

Hope your day is better than mine.

I’m glad I went away, however it’s hard to come back to this.

Passing of Michelle Baskie

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I went to see my spine doctors nurse on Monday to check out the bump in my back.  She said it was just the screw used to attach the metal rod to the bone.  That was a relief.  My radiation doctor isn’t able to request a brain scan with the neck CT Scan (separate tests) …guess I will have to address that one with my oncologist the next time I visit him.

My kids are at camp at Gilda’s Club this week. They are off to Lego Land in a snow storm today which hopefully will be a lot of fun.

My daughter cried all the way home from camp yesterday after I told her that her last year’s teacher, Mrs. Baskie passed away that morning (diagnosed with pancreatic cancer in June).  Her former teacher was so very kind and supportive towards me and my daughter.  She had a very strong faith in Jesus Christ and I know in my heart that he is taking care of her now.  I feel bad for her husband and three boys now that she has passed, but I also know that she was in an awful lot of pain in her final days and that is not an easy way to live.   Her funeral is on Friday.

Love the ppl god gave you, need them back one day