Another Year Without Christmas Shoes

Well, I survived another Christmas. My husband asks me every year if he needs to run out to buy me Christmas slippers yet. Ha ha. He’s got Christmas Slippers part one and two if you want to watch it. Just don’t ever return them.

Unfortunately I have been sick for about 3-4 weeks. The wet, damp mouldy weather we’ve been having is making me cough up a lung as I’m allergic to mould. Today is the first day it’s actually snowed which I’m hoping is going to help. Either that or I’m going to have to go somewhere hot where there is salt water. I’ve got to find a way to dry up my lungs.

I had a blood test over a week ago and got some really bizarre results. (low wbc and rbc, low hemoglobin, low hemocrit, high LD, high B12 and high ferritin. I’ve been getting cramps in my legs and I cant walk up a flight of stairs without being out of breath and having fast heart beats. The nurse at my Drs office told me to go back and redo the blood tests because my blood coagulated and it probably wasn’t accurate. I asked her to put the requisition into the lab and I would go the next day. I went, the requisition wasn’t there. They called up to the office. The secretary said she didn’t know anything about it and the nurse wasn’t coming in until the afternoon. I left. Got a phone call from the nurse later telling me she forgot to put in the requisition but she would do so now. Too late been there twice. Didn’t feel well enough to go back again. So I don’t know what’s going on with my blood work.

On Christmas Eve I had my family coming over at 4:00. I also had to get my two shots in the stomach by CCAC at 2:40. I figured I had plenty of time to pick up the sushi dinner I ordered at Niji’s and the halibut and chips from Fish Joy. But I was wrong. I spent 2 1/2 hours running from one clinic to another one and back to the first one because they lost my file and none of the nurses could give me the shots. I was so desperate I told them I would shoot them into myself… just tell me how to do it. “I can’t do that,” I was told. I was pissed. Spoke to the supervisor on the phone who told me to return to clinic #1 one because that was the only place that had an experienced nurse who could give me the Zoladex (40 degree angle, 16 gauge large metal needle with a hollowed out inside with a pellet). And you know who the experienced nurse was? The same goof I had in clinic #2 I was trying to avoid because he needed two try’s to get it in me in September. Are you kidding me??? I told him, “Please don’t take this the wrong way, but I think that before Princess Margaret Hospital outsources its patients to get these needles, they should train you to do it first. This is ridiculous. I don’t want to be tortured.

My oncologist is going to get an earful when I see him. I never want to deal with this Nursing (?) company ever again. I’m certain that this clinic was the same bunch of idiots who sent a nurse to my house 5 years ago to change my picc line with bloody gloves!

And I now I find out from a friend of mine that they can give you one three month shot of Zoladex. If my oncologist only wants to see me every 3 months, then why can’t his nurse (who knows what she is doing), give it to me? I told him the problems I had been having trying to get this shot. Why didn’t he suggest the 3 month needle instead or something else that the CCAC is equipped to deal with? WTF?

And now to my next problem. Decided I’d better try and get the results of my MRI from Carepath in case I ended up in the hospital. I was feeling pretty rotten. So rotten that I didn’t make it to rehearsal or Christmas Eve service at my church which I have been singing for over 25 years.

The good news is that the tumours I got zapped at T8, T9 are stable (you could have fooled me because I still wake up in pain like someone shot me in the back every morning). There is also evidence of 2 cysts in my neck at C7, C8. But the bigs news of the day is that the technician wrote that there is metastatic cancer throughout my bone marrow OR I have developed something called myleofibrosis….which when I checked on the internet is some sort of blood cancer/leukaemia brought on from too much radiation. In other words, my spinal cord may have been fried and I have some sort of scar tissue which is causing me not to produce enough red and white blood cells.

Now I have been down this road before when I came back from treatment in Germany and I was told I had cancer throughout my bone marrow and I didn’t. I’m not about to have another bone marrow biopsy to prove them wrong again. I will just wait it out.

I’m betting the technician has never seen little piggy stems cells at work and doesn’t know what to call what he is seeing in my bone marrow. My appointment with the radiation guy is at 3:00 on Wednesday. Maybe I’ll get some real answers then.

Lung X-Ray Results

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I went to see my oncologist yesterday for my 2 shots in the stomach and my much anticipated x-ray of my lungs.

Last month when I ended up in the ER with chest pains/breathing problems, I had a CT scan.  The technician reported that there was “probable evidence” of metastatic breast cancer invading my lungs.  My oncologist said that within 3 weeks it would most likely spread and I would probably have to have my lungs drained of fluid.  My family doctor,  foreshadowing  my steady demise, told me she thought I should get back on chemo. (like my oncologist said I should).  My benefits team of doctors also warned me that there were mets in my lungs and told me to get back on Tamoxifen to see if that would make a difference.  Meanwhile, I was sitting tight thinking that they were all wackos (my husband concurred).  I mean, I know that they are concerned that I’m not doing conventional treatment, but boy they really jump on the cancer bandwagon when something looks different on a scan.  I mean, it can’t be something ordinary.  It has to be cancer!  How about allergies or some other explanation?  Nope.  Cancer.  Three against one.

IMG_0657IMG_0656I felt better after seeing my radiation oncologist last week.  My spirits were buoyed when he told me there was no evidence of mets progression in my spine. It now became three against two because he was impressed that I was doing so well and he wanted to know what I was doing in Germany.  I told my family doctor that it didn’t make sense that my spine was fine and all of the sudden there was metastasis growing in my lungs.  She said cancer can go anywhere it wants.  That’s fine and dandy lady, but isn’t it probable that it would be advancing in my spine too?  I decided my family doctor is really not too bright.  I mean, I didn’t go to medical school or anything like that, but really?  This whole thing seriously did not make any sense to me.  And besides, I’m still shaking my head at her last stupid comment when I had an ear infection (in February) and she told me I should get my face x-rayed because the cancer may have spread to some bone near my ear.  My oncologist practically had a heart attack suppressing a burst of laughter when I told him that one!  I could see tears in his eyes and even he told me that maybe it was time to a get a new family doctor because cancer doesn’t work that way.


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IMG_0655 IMG_0654 IMG_0653So as I was waiting to see my oncologist for my x-ray results, I got an email from myUHN account (a new program which informs you when your test results are in).  Bonus!  Now I get to know what’s going on before he even comes into the room.  Scanned it quickly.

The cardiac pericardial silhouette is normal. There is a small nodular opacity in the right lower lung better visualized in the chest CT.There is mild linear fibrosis in the lung apices. (that’s scarring from radiation)

There is no other significant abnormality seen in the lungs.

There is no significant abnormality seen in the mediastinum.

There is no pleural effusion.

SMIRK!  So there is nothing really going on my lungs.  “Oh, this is going to be a good appointment,” I chuckled to myself.

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Now, do you think he would admit that I was stable and that whatever I was doing in Germany was working for me?  Nope!  He just picked up the box of zolada (shot that stops my periods/estrogen which I’ve been on for years and I still had progression while on it) and said, “Oh this must be working for you and you must have a really slow growing cancer”.  “Yeah, sure,” I thought.  “I’ve been diagnosed with a very aggressive form of DCIS and it magically has disappeared.  I haven’t been on conventional medication for a good 1 1/2 years and I’m doing okay!   A big part of me wanted to tell him that the snake venom was doing the trick, but I kept my big mouth shut.  However, one day it’s going to come out!  And I can’t wait to see his face when I tell him that!  I will need some sort of video recording device to capture the moment.  And I want my husband there so we can laugh about it for many years to come.  

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And then my onc. burst my little bubble some more by saying that this test wasn’t as good as the CT Scan (which shows more).  Hang on there bud.  Wasn’t I told that I suppose to be chock full of mets in 3 weeks and shouldn’t I be having my lung drained by now?  

IMG_0649“So what do you want to do now?” he asked me.  “Nothing”, I told him.  I’m having some issues with my heart which I need to address.  Right now, I’m staying off everything.  He told me the tamoxifen may have contributed to the fluid build up around my heart.  I really don’t think it was that…I’m quite certain it’s from the overdose of stuff that naturopathic dr gave me a week before the heart problems started.  I’m having an echo done on Monday and I’ll be sporting a 24 hour holter monitor on Monday.  I investigated everything I was taking (vitamins/supplements) and have come to the conclusion that everything I was on was interacting with each other.  So now I’m off pretty much everything until things settle down. 

IMG_0648I feel much better today and my new shipment of injections/drugs have arrived from Germany.  My oncologist nurse told me I lost too much weight (10 pounds due to gluten-free, sugar free, dairy free crappy diet) and there was not much stomach fat to stab me with the needles.  I told her that I like seeing my toes when I look down.  She shook her head at me and told me to be careful, cancer patients need all the nutrients they can get from food.  

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So I went to an All You Can Eat Buffet after that appointment to celebrate!  Food, here I come!

I started juicing more at home too.  Still can’t walk up a flight of stairs without huffing and puffing…will know what my heart’s ejection fraction is some time next week.  I know it’s not normal, but I hope it rebounds for the better soon… I’ve got places to go and people to see!

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P.S.  Frick came in 4th place for Javelin throwing in the East Toronto Finals at Birchmount Stadium and will be going on to the City Finals on Tuesday.  That girl’s got a good throwing arm.

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I met someone at the Naturopathic clinic who has breast cancer and was basically told she was incurable and was going to die.  Like me, she is not doing conventional treatment.  She went to Tijuana and The Issel’s Foundation ($70,000) and managed to shrink her tumour from about 8 cm to  0.7 cm.  However, her disease is now progressing.  Told her about Germany.  Guess where she is today?  Yup.  Flew to Baden-Baden and begins treatment Monday.  I really hope Dr. Sommer can help her as her oncologist here is the same as mine.

Wouldn’t that be something?  More arsenal for alternative treatment in Germany when two of us are sporting good results, don’t you think?.  Wonder if I can find and ship some more of his patients to Germany.

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By the way, I think I should give you his address in case any of you are in a pickle and need alternative treatment.

Cell Vital Clinic (cellvital@freenet.de  (or) info@cellvital.net)  Telephone:  011 49 7221 39 19 49

Dr. Daniel Sommer

Lange Strasse  72

Baden-Baden, Germany

Web-Site:  www.cellvital.net

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Todays paintings were created by our grade 1 students (with the help of the grades 7/8’s because they were having trouble cutting out their fish with scissors) in the style of Eric Carle.  I have tremendous respect for grade 1 teachers because I think it’s one of the hardest grades to teach.

  

Why I’m Not Doing Chemotherapy

 

Not my hands/feet, but you get the idea

Not my hands/feet, but you get the idea

I have an appointment with my family doctor today.  This ought to be interesting.  When she asks me if I’m on chemo, I will just say, “Why?”  I’ve been stable on the German medicine for 8 months and my feet don’t burn.  Why fix something that isn’t broken. It’s actually nice not shedding skin from my feet like a snake on a weekly basis (which was happening while I was on the Xeloda/Capecitabine).


Things Go WrongIf she tries to convince me to go back on conventional treatment, I will say….”Let’s see…my heart stopped dead when you gave me Taxol (during intravenous chemo…which my oncologist was thinking on putting me back on once the Xeloda didn’t work).  I had heart failure because of the epirubicin,  I had a stroke/TIA because of the tamoxifen.  The approved FDA drugs I have been given from here are too toxic and are affecting my heart.  Besides, I’ve already been told the chemo drug Xeloda is only temporary and would probably only be effective until June.  Will chemo go after my mutant DNA?  No.  But the little piggy stem cell transplant might correct it.”

Besides, since I’ve been on the German medicine, my heart function has improved dramatically.  Yes, my red blood cells/hemoglobin have been low because of the artesunat, but I just got a new shipment of really terrible tasting stuff to improve that.  I’m feeling much better.  My energy level is improving daily and my test results show no evidence of my cancer spreading.  So guess what?  I’m sticking to the thing that is working right now which causes the least amount of side effects and if and when that stops working, I may decide to go back on chemo or I may not.  (There are other cancer alternative therapy options in Cuba and the USA).

Hmmm….wonder what she going to say about that.

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My friend Cathy knows a person who had brain cancer and was told she had 3 months to live.  She met a person with the same type of brain cancer who beat the odds and is still alive 5 years later.  She asked him what he did and he told her about this clinic in Germany.  She never told the doctors here what she did because she was afraid they would dump her as a patient and not allow her to participate in clinical trials.  Three, six, nine, twelve months went by and she was stable.  The doctors here were amazed that she was still alive because everyone else with this type of cancer was dead.  She never told them about her treatment in Germany until 18 months later when small tumour was discovered in her brain.  She had surgery to remove it.  It’s been 2 years and she is still alive.  She is currently doing chemo/radiation, but I heard she was currently not doing very well, which makes me sad.  She has two teenage children and a husband who has been taking good care of her since her first diagnosis.

Unfortunately, there are no guarantees in life when you have cancer.  You just have to make the best of whatever gets thrown your way.

When I went to Germany I met a really nice older italian man named Greg.  He has been going to the clinic for 2 years and it has helped him greatly.  I will tell you more about Greg in my subsequent blogs about my treatment.  His story encouraged me.  His story gave me hope and has made me question our health care system.  It’s not all that it’s cracked up to be.  But that’s just my opinion.

 

New Tumour

I went to see my spine guy yesterday and was told they found another tumour growing….this time in my neck (C5).  So now I need to get it radiated the end of March.  No wonder I bought 2 pillows over the last couple of months.  I think my neck started hurting before it was even detected on the MRI because they didn’t see it in December and I bought a new pillow in November.  Trying not to get too worked up about it.  However, the associate started asking me questions like:   Do you have any headaches which tylenol didn’t help?  Any dizziness?  Nausea?  “Great”, I thought… “She thinks it’s in my brain too”.  I told her no, but I did have some headaches from what I thought were from the barometric pressure.  Now I question whether I should have said yes, so they can check out my brain too.  More concerning for me right now is that my back is itchy.  It’s worse after I take a shower and I think I feel a bump there, although BoBo tells me that it’s where my metal rods were inserted.  I don’t know what to think and am in a bit of a panic about that….but you would have thought if it was something, the associate would have seen it and told me about it after seeing my more recent MRI.

Frick and Frack are at home right now.  Frick has strep throat, and Frack….I’m currently not sending him to school due to issues of bullying.  So now I’m home schooling him until I figure out what to do.