Look Who’s Driving the Bus

Look Who’s Driving the Bus

  Dear Friends, I’ve been busy doing all sorts of fun things lately and haven’t had much time to write. Tried to do a quick update, but had to relearn to put pictures in my posts because they changed the … Continue reading

Miracles Happen, Right?

IMG_2225Tuesday, January 5

Would you believe that I still have no results pertaining to my lung yet?  I was checking all day, scared of what I might find.

Saw my surgeon.  He is a good guy. Asked me how I was doing.  I’m okay, I told him, but it looks like I have mets in my bone marrow again… although I don’t really believe it because this happened to me before when I came back from my cancer treatment in Germany.

Oh?  Why did you go to Germany?

Now there’s a loaded question.  This is what I told him.  Hmmm…it might be because they almost killed me three times here.  Or maybe it was because the hormone treatments stopped working and they told me they couldn’t do anything for me anymore except manage the pain.  That’s when I decided to high tail it outta here because at least over there they thought they could keep me alive for many years to come.

“Well it looks like Dr Sahgal is happy with your progress,” he said.  “Nothing going on in your spine.  Your bones are growing back and your hardware is good.”

nutella

“Yes but my oncologist is not happy with me right now because I’m not doing what he is telling me to”, I replied.

“How did you find out about this place?”, he asked.

“My friend knew someone who went there”, I told him.

Short and sweet and I was out of there with an appointment scheduled for next year.

Before I saw him,  I was talking to the nurse in the room by myself (she was the one that nicknamed me “The Screamer” after my surgery).   I asked her if she would mind looking for my chest CT scan on her computer because it wasn’t appearing on myUHN.  I had results for my pelvis and abdominal scans, but nothing has been reported about my lungs.  I was worried because I have been coughing lately and I was told in August that I had a tumour at the bottom of my right lung.  She checked.

Thank heavens PMH actually did the scan which included the lungs.  That was a relief because I would have gone on some kind of Italian rampage if someone messed that up and I had to go do this again. I really don’t need more radiation considering I’m maxed out.  The nurse went through the slides and said, “I’m no technician or anything but I don’t see anything”. Meanwhile, I was peering over looking for white spots on my lung scans too and didn’t see anything either.

Now wouldn’t that be something if the 1.9mm intelligent doubts, stupid confidencetumour they found in August and spots on the fissure line disappeared just like the thing on my pancreas?

Miracles do happen, right?

—————————-

That afternoon….I decided to try something new today to alleviate my bronchial asthma problem.  I visited a salt cave.

Several years ago when I experienced this same yearly nagging cough in the fall (rain + leaves = mould), my allergist told me the only way to get rid of it is to go to somewhere hot with a beach and breathe in the salt water air.  Sounds enticing.

Well although I would love to escape right now, it ain’t happening due to the fact that my family dr seems to think I need a blood transfusion and I’m not exactly rich.  Btw, I phoned Germany for some hemoglobin help and it should be on its way.  Plus I stopped taking my German drugs temporarily until my white/red blood counts improve.  There was also some mention about giving me a neupragena (sp?) shot ($3,000-4,000 a pop) on my Sunnybrook blood test results but no one has phoned me about that one yet.  That prescription certainly will give me lots of air mile points for my next trip, as a patient usually needs 3-4 shots to get their counts up. Although I think I would decline that proposed strategy because I’m sure it comes with some interesting side effects which I could do without.  I get to visit my family dr next week.  Can’t wait to discuss the sudden disappearance of “my baby.”

IMG_2211The salt cave was wonderful on my lungs.  I spent the first 1/2 hour coughing up a storm.  I felt rather bad for the gentleman in the cave with me and my older sister.  He certain didn’t get a quiet session because I was coughing up a lung.  Felt really good.  Salt is so healing.  Wish I had know about this before when I suffered with bronchial asthma.  I can’t use a puffer because I’m allergic to ventolin, alupent and its whole medicinal family including it’s cousins.  The cave was a little bit cool so I wore my white alpaca babushka hat which I bought from Germany.  My friend Doug calls me the Snow Queen whenever I where it.  The cold weather lately sure warranted it.

IMG_2208

Wednesday, January 6

Still no lung news.  I phoned the CT Scan place….got a recording, what else.  Maybe if I’m in a bad mood, I’ll nag them and call them every 5 minutes tomorrow.  Fill up their answering machine with 20+ calls.

Today I went to The Art For Cancer Foundation and made the  winter scene above.  It was challenging.  I enjoyed painting it, but my back sure could use a rest.  Time for bed.

———————————————————-

Below are the benefits of going into a salt cave, should you ever decide to go.  The one I went to was in Mississauga.  There is one near York University, in Niagara Falls, and The Windsor Arms Hotel.  I didn’t realize it increases your hemoglobin level too!  Next time you’re sick or have a respiratory ailment you may want to check it out.  Prices range from $17 (Groupon) to $50 for an hour session depending where you go.

IMG_2229

Lung X-Ray Results

IMG_0661

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.


IMG_0653
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.

IMG_0652

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.  

IMG_0651

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.  

IMG_0646

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!

—————————————

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.

IMG_0645

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.

IMG_0644

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

IMG_0643

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.

  

Quackery

Grinning from ear to ear today!

Went to see my radiation doctor who smiled at me and told me my spine was stable, I looked great and “What exactly are you doing from Germany?”

Although I was REALLY tempted to tell him I was taking snake venom (which cuts off the blood supply tumours need to grow), I kept my mouth shut and shrugged because Bobo and Ric both told me not to say anything.  “You know I haven’t been taking anything from here in over 1 1/2 years” I told him.  “I know”, he said, “That’s amazing and you look really good too.  “How much did it cost you?”  $5,000 euros for a two week treatment ($7,500 CDN) I told him (although that does not include travel expenses, lodging, food, transportation, and meds).

He said that he has another patient who went to Germany for treatment and he is doing really well too.  He also said, get this, “You should tell your oncologist to look into it!” HA HA HA HA HA!

Never thought I’d ever hear a doctor say that!

I love my radiation guy!  Finally, someone on the same page as me!

I told him my oncologist thinks it’s quackery.

Man I hope he writes something about this in his clinical notes to my onc.  That would be sooooo lovely.

Another Fun-Filled Day in the ER

IMG_0232IMG_0222Spent some quality time picking my nose at the ER at Mount Sinai hospital today. 5 1/2 hours. Where do I begin? Let’s see….



IMG_0219Went to my appointment for my vitamin C I.V. at the naturopathic college. Told the doc.  I wasn’t feeling so hot. I felt like I was having heart failure. I know that feeling all to well. I also had my weird “asthma”cough which I get when I eat dairy products. However, I’m on this bloody gluten free diet and haven’t touched anything dairy in a week. I figured my new symptoms might be caused the new supplements I was taking my new Naturopath in Etobicoke. I think that veggie protein drink I bought makes me asthmatic and the B17 vitamin is screwing up my heart.

IMG_0231The Dr. at Robert Shadd clinic listened to my lungs and thought she heard fluid in there and instructed me to go to emergency. Apparently that’s a symptom of heart failure. I was just going to go home, but after she told me that, I thought it would be prudent to go to the ER even though I didn’t want to.

IMG_0229I arrived at 11:30.  At around 2:00 the ER doc. (when she saw me 3 hours later), said I should have a chest X-Ray. I told her “No Thank You”. “Why couldn’t she just order me a CT scan on my lungs and liver since I was suppose to have one a couple of weeks ago anyway.”   She said she didn’t think I had heart failure because she didn’t hear anything in my lungs, but I may have metastasis in my lungs or a pulmonary embolism.

IMG_0227Now I’m no doctor, but I figured if it was a pulmonary embolism, I would have been dead by the time they scanned me several hours later.

IMG_0225She said the pain I was feeling on a bone on my ribs could be the result of lung mets.  So I told her that while I was having a CT scan on my lungs, they may as well scan my liver too, since that’s another hot spot that mets go to and I didn’t want to have the scan twice…once for my chest and once for my abdomen. She said she couldn’t order the abdomen to be scanned because that wasn’t why I came in the ER. I told her I may as well go next door to PMH and get my onc. to order one scan for both because I really didn’t need the extra radiation. She said it may take 4 weeks for my onc. to order the CT scans and she had to check for a pulmonary embolism. I told her I didn’t care, I was going home. She then decided to phone my onc. who told her to order both. I think I have finally learned to advocate for myself and work the system. It’s been a long process, but goody for me!

IMG_0220

Bobo bought me some lunch…via a message from me via email. Thank heavens for free wi-fi at hospitals.  Yes, I know, buy a phone.  I was thinking of emailing my friend Wanetta who works nearby for some food if Bobo couldn’t come! He spend an hour with me and then went back to work while I chatted with all the other patients there and told them the drill.  That dr. over there is called Goldstein…he wrote a book about the Midnight Shift in the ER”.  Scary when you recognize the doctors.

5:00. Got my results….sort of.  No pulmonary embolism…now there’s a shock. No liver mets. My dermoid cyst decreased 1/2 cm. No heart failure. No bone mets on my rib, which hurts like hell (she said it’s probably muscular).

IMG_0224However, there is something going on in my lungs, but she said phone my oncologist and talk to him about it tomorrow. I tried to decipher the gobbley gook, but could only make out that there is a spot on my lung (tissue damage?) from radiation treatment. It said something about cement (I’m guessing from when I fractured my back and they did surgery on that bone).

Here is what the report said on my lungs:

There is a bilateral apical fibrosis stable in the interval. Along the major fissure on the right side the nodules have increased in size. In the left upper lung, there is a stable .3 cm nodule. Along the fissure in the left lung the nodules have increased in size. In the left lower lobe there is linear atelectasis.

Summary: The nodularity along the right base pleural have increased in size and also the fissural nodules bilaterally have also increased in size in the interval. This could be concerning for metastases.

IMG_0196

“Could Be?”  I’m taking this with a grain of salt. I don’t think it’s anything but the after effects of the radiation treatment I had in January. Until they tell me for sure it’s mets in the lungs, I won’t be doing chemo. any time soon.  I go for my spinal MRI in mid-May. We’ll see what happens there with my bones.

IMG_0199Meanwhile, my german doctor sent me the results of my urine sample today when I got home after 7:00 p.m. Can’t read german, so I have to get someone to translate it first. But I did see he ordered Sanomit (co-enzyme Q-10) for my heart. Interesting he figured that something was going on with my heart from a pee sample from 2 weeks ago.

IMG_0194By the way, I don’t have an appointment with my oncologist until July because they have this new protocol at PMH. I used to see my oncologist or resident every month when I went to get my 2 shots in the stomach. Now I have to go to the 4th floor for my shots by a team of nurses and don’t see my onc. until July. Too bad, so sad. Guess I won’t be having that discussion about “What is in your lungs”. There is nothing in my lungs. Yes there is. We know what it is. No we don’t. However, this time I’m not going to let them shove anything in there to test out the waters like they did with that bone marrow biopsy. There is something to be said about your gut instinct. Trust it. I’m just going to tell him that if there is something there, it will show up in a couple of months on another scan…however it will say Mets to lungs not “could be”. Until then, I am quite happy to be merrily on my way doing “Quackery”.


Hope you like the rest of the gr. 2/3 acrylic canvases above.  I did some flower paintings (tulip/poppies) at the Art for Cancer Foundation on Monday (shown above too)

These are paintings were made by our teacher, Sarah Hall.

IMG_0201IMG_0200IMG_0202

 

And these are made by other cancer patients at Monday’s art workshop.  I love going there because it’s always fun being the student and learning something new!

IMG_0203 IMG_0205

Bears, The Rebel In Me, and I’m Getting Out of Here!

BEAR CONTEST

IMG_0136On Monday I had fun painting a bear at a workshop through The Art For Cancer Foundation.  The guest artist was Laurie Stein who illustrates children’s books.  She was wonderful and I thoroughly enjoyed my afternoon there.

Well, I didn’t win Michaels Paris Contest.  Didn’t even come in second place (and I could of really used the $1,000 gift card to buy canvases and acrylic paints to do art with the kids).  So I’m going to have my own contest.  Here are the details.

If you are a teacher,  I will come teach your class how to make “Bears” sometime in June (right now I’m quite busy doing Mother’s Day stuff).  You will need to be somewhere in the Toronto Area and supply canvases/acrylic paint for your class (because I am not a millionaire and can’t afford it).  The Dollar Store has lots of canvases that cost between $1 – $3….and I think we will need about $30-$40 worth of paint depending on the size of canvas you choose.  So if you have some Read A Thon money left over or you want to ask your students parents for a couple of bucks, and would like your class to make a bear, then enter FAST!  You may be the winner.  I like these contests!

All you have to do is be the FIRST PERSON to RESPOND via email or this blog.  Hurry.  Do it NOW!

I cannot for the life of me get a picture of my bear on  here to show you what it looks like.  I don’t know why this isn’t working here.  I wish I was more techno-savy and knew what I was doing!  I always could get my pics. from my ipad and insert it into my posts before, but why is this just not working today?  UGH!!!

Oh well, you will have to go on Laurie Steins web-site and look at her artwork for yourself or go on the Art for Cancer Foundation Web-site and you can see all our bears from Monday’s workshop.  Mine is the second bear on the left side from  with the red background.

I’m not sure how to add the link…this is what I got:

https://www.facebook.com/pages/ART-for-Cancer-Foundation/195129660503339

Good Luck!

—————————————————————————–

Me, The Rebel

I have been playing hooky with my doctors lately.  I didn’t show up to see my back surgeon because someone left me a message the day before and told me I had to have an x-ray done before my appointment.  I have decided I have had quite enough of radiation lately and if the screws were loose in my back, I’m sure I would have noticed it by now.  Besides, I figured they can get that information from my last MRI which said the screws where all there and they looked just fine.  I know.  I got the report.  Why put me through a spinal x-ray when I have a gazillion MRI’s reports?

—————————————————————————–

I’m Getting Out of Here This Week-end!

I’m so excited because soon I will be on my way to a retreat for Metastatic Breast cancer patients in King City.  I had heard about it from the organization Rethink Breast Cancer way back in January and requested information.  Unfortunately, I think they forgot to send it to me and when I emailed the contact person this week, she told me the retreat was this week-end.  Lucky for me, someone had just cancelled and she told me I could go in their place.  Got my bags packed and I’m ready to go!  Freeeee food, accommodations, pool, fitness and spa facilities, library, hiking trails, Ropes, Squash, Tai Chi, Meditation classes, and group discussions with other Breast Cancer Mets patients.  Boy I am a lucky bitch, aren’t I?  I’d send you pictures from my ipad on my blog, but it really isn’t cooperating with me.  You can check it out the place at

http://www.kingbridgecentre.com/

 

The Results

51049a380d3c9663fd69f6de2dc617c7Well The Cat Says It All!

T’was a good day.

Speaking of cats, I’m certainly feeling like I have nine lives.

Went for my dreaded 9:30 appt fearing the worst. Took Bobo with me…he brings me good luck. No doctor ever says anything bad when he is around. He is also my comic relief. When the nurse asked me for my red hospital card, he asked her if I gets points for it. She started laughing and then he told her if you rack up enough points, you get a tongue depressor!  He should have be a comedian.

Let Go what you Cant ChangeWhen I saw the radiation guy, he said everything was okay. I gave him the stunned disbelief look. “Whaaat?”, I said. How could this be? I got a whole bunch of things getting bigger in my spine and everything is okay?” I’ve got the report right here…I have another team of doctors who just told me that I needed to call my surgeon because my neck needed to be stabilized before you zapped me again.

“Who told you that?” he asked. My health plan has this thing where they phone you every week to see how you are doing and they always get me my reports before I see my doctors and tell me what’s going on. “Well, they are wrong”, he said. “I just looked at your MRI and everything is within the normal parameters”.  You are a complex case and don’t listen to them. (This is coming from they guy who told me that I had cancer in my neck (C5) last June and when I came for my simulation appointment, discovered the technician was wrong and it wasn’t anything.  So really folks. Just who am I suppose to believe now?)

My husbands sitting next to me, with his “I told you” cheshire grin on his face.  He told me all week-end that they were all whacked.

Meanwhile, I was seriously intent on booking a trip next week to Europe to see all the stuff I had on my bucket list before I became a quadriplegic. I was going to go to Pompei, Rome, Milan, Venice, with a side trip to Germany to pick up my intravenous bags of Curcumin, then I was going to take my daughter to see the Eiffel Tower (her dream), and then take the bullet train to London to see a more palaces and other great places. I figured I’d better do everything I wanted to do while I was still walking!  I was going to do the Queen Latifah thing….cash out whatever money I could find (RRSP, who needs that?) and LIVE IT UP! If you haven’t seen her movie, called “Last Holiday”, it is funny and a must see. (You can download it on your computer for free on YouTube).

Still in a bit of shock. But very happy. And eternally grateful that the good Lord spared me once again.

8b4624cdcaf77c9ac9efb0ce0e701dca

 

My radiation guy asked me what my oncologist wanted to do for me re: treatment.  I told him he wanted to put me on the foot burning chemo (Xeloda/capecitabine) and I wasn’t going for it.  I couldn’t walk every other week because my feet were burning and peeling.  “Don’t they have anything else for you?” he asked. “Yeah, the intravenous I.V. ones where all your hair falls out”.  He just smiled at me.  He must think I’m nuts.  I told him I was sticking to the treatment from Germany as long as I possible could because most of the people I know that were in the same boat as me and stayed on conventional treatment were dead.  One just died 2 weeks ago.  He said, “Some of them were my patients, weren’t they?”  I just looked at him and didn’t say anything.  Then he told me that some of his patients were going to Germany for some kind of hyperthermia thing.  I told him that wasn’t what I was doing.  Didn’t want to get into another conversation with a doctor about piggy stem cells to be told it was quackery once again, so I did not elaborate.

5c16a19e1905a67d8568e99170fa42a87896cefbd0a3e17496212592ad6e1a8fe913fc3cfdf4586867e9cf2517ad4942However, I’m thinking the next time a doctor asks me what kind of treatment they are doing for me over in Germany, I am seriously going to tell them that I’m getting stem cells from a unicorn.  It sounds better.

 

 

P.S.  My new shipment has arrived from Germany.  More needles.  One shot in the butt every morning, two at night, and drops/tinctures three times a day.  My husband enjoys it more than me.

My Newest Paintings and A Brush With Spiderman

Thursday, March 15


Yellow BunnyYesterday I drank so much water (16 glasses), my urine was no longer yellow. My tongue was white and I have developed a SERIOUS shortage of saliva. I’m hoping the cause is from the strong antibiotic I was on and still not because of my radiation treatment. My ear has also started to hurt again. My family Dr. is on vacation and her secretary told me I may need to go back on antibiotics.

 

Purple BunnyMy former principal hooked me up to a new friend, whom I will name Katie. Katie, like me, is also a mets. breast cancer patient and does a lot of researching. However, her mets are in her liver which she has kept stable until recently for about 2 years by naturopathic means. She is a fountain of knowledge and I am so blessed to have this new connection. I could talk to her on the phone for hours. We are able to bounce ideas with each other and learn from one another. I never met anyone else like this. And I owe her big time….

 

google when sickI have been getting a bit jittery over the last 2 – 3 weeks because my medications from Germany have essentially run out and I’m waiting for more. I got a letter from the German Dr. saying my metabolism has improved, my kidneys are light/insufficient (?), there is calcium in the urine, and I have an inflamed intestine. My prescriptions were sent to the pharmacy, but I haven’t received a call for my VISA number yet for them to ship it here. I hope it doesn’t get caught up for a month in customs again. Meanwhile, I’m thinking my immune system is still run down because of the radiation treatment. What if I can’t get rid of this ear problem?

HousesappreciationKatie suggested that I go get Vitamin C I.V., which I heard of, but never tried. So off I went to the Robert Shadd Naturopathic Clinic on Leslie St./Sheppard and gave it a shot yesterday.  Last night I started having a headache when I went to bed and prayed to Brother Andre, like one of my good friends told me to do.  Some time during the night I had one hell of a fever. “Thank heavens, my immune system is back to work”, I thought as I drifted off back to sleep.

Cherry BlossomsStill had a headache this morning when I work up, but I felt different. I felt cured of whatever ailed me. The heavy sinus feeling in my head was gone. I’m still thirsty, but not nearly as bad a yesterday. That’s a good sign. I have to go back every week of Vit. C for 5 more weeks. Hopefully it will blow up any cancer cells running amuck in my system and improve my immune system.

mini cherry blossum

Spent the morning painting and reminiscing about my friends Michelle Baskie (who passed away of pancreatic cancer) and Maria O’Kane (esophageal cancer). I miss them both so much and think of them often.

 

tenantLast night I looked for information about another person who died on the week-end of metastatic breast cancer. She was diagnosed with breast cancer in her bones at the same time as me  (fall of 2012). Her name was Lisa Bonchek Adams. The similarities between the two of us are eery. Most of the meds we took were the same and she had the same tumour/gene markers (Pi3K). We both had problems with our heart because of chemotherapy and I think I started reading about her because we were both featured in the same Toronto Star article about 2 years ago. I didn’t really read her blog regularly as it had a way of upsetting me and made me feel like I was doomed.  I saw on the news the other day that Lisa passed away last week-end. Her cancer spread to her bones, liver, lungs, and finally, her brain.   I think, I know actually, that I would have been in the same boat had I not gone to Germany for treatment there, no matter what my oncologist thinks and says about it (quackery).

cceb279a36216f145ab2ab856f28e9f5Gotta go to get my shots tomorrow and defend my position as to why I am doing “Nothing” about my cancer. I’m going to tell him that Lisa is dead and I’m not.  I think I made the right choice.  Besides, what drugs is he on thinking that I’ll go back on the feet burning drug Xeloda?  Katie told me she had a heart attack on that drug.  I’ve had 3 separate heart issues because of chemotherapy and he wants me on that one?  Other options being offered are intravenous, loose your hair ones.  I’m going to try everything else I can think of first.

Purple LadyI have gone to a few of “Art For Cancer Foundation” workshops over the last couple of weeks and tried some new projects. I like learning new things, even if they are a bit out of my element like this purple lady I painted. That’s also where I learned to paint the “Cherry Blossom” ones and the surrealistic homes above. I like going there because I learn new things and I have a finished piece of artwork by the time I leave. I also painted some Easter Bunnies (when I was sick at home) which I found on pinterest so I could practice how to do them before I taught them to a grade 2 class after March Break. I love pinterest and found lots of things I want to try out, when I have time. Next week I’m planning to work on my blog and write about my escapades in Germany at Christmas time.  That was quite an adventure.  One last painting to show you….

Purple Winter Sky

________________________________

images-2Friday, March 13

You won’t believe what happened to me after I visited my friend Wanetta who works at CAMH.  I was returning to my car.  The light was green, but I only had 8 seconds to get across the street.  Should I do it?  “Yeah,” I though, “I’ll make it, but I’d better RUN.”  So I did.  I’m running across the street and almost made it in 6 seconds when, low and behold a giant man in a Spiderman costume comes
barreling down the street on a skateboard.  “Holy Shit”, I thought, “I’m going to get hit by Spiderman”.  I stopped dead in the 3rd lane.  “WHOA, Missy”, he calls to images-3me in a very LOUD, Authoritative Voice.  You should NEVER JAY WALK!  “What?  What?  What are you talking about?  I HAVE A GREEN LIGHT, buddy!”, I yelled back.  “Oh…”, he answered. Well you never know, I may not be able to use my special powers to save you?”  WTF?  Special Powers?  Is this really happening?  I made safely to the sidewalk, glancing at Spidy beside me.  He had the whole get up on, mask, suit, and skateboard.  “How the hell can you see?”,  I’m thinking…..” You are going to have to save those special powers for yourself riding on the street on that thing in that get up!”

As I made it to my car I quickly pulled out my ipad.  I gotta get a pic. of this guy and put it on my blog.  But unfortunately, Spiderman disappeared as quickly as he appeared.  My Hero….not.unnamed

Feb. 13, 2015

I am NOT having a good day.

Find a cureWent to the oncologist today and got my shots in the stomach. When I left, I got the feeling he was not on board with my decision to continue doing the treatment in Germany which he claims is “quackery.”  Take a deep breath.  Too bad, so sad, it worked for 10 months and I’m going to keep doing it.  I’d rather do that, than have my feet burn off with chemo.  I also talked to him about going to the naturopath to get intravenous vitamin C.  He said, “It’s not proven to be effective”.  My husband said that there are lots of books and journals in Germany that say what they are doing works.  Doc. said there weren’t enough case studies done.  I asked him what it was going to take to do that.  He said it will never happen because you can’t patent something like vitamin C….it’s not profitable.  Bunny:snowmanYou need lots of money to do trials with lots of people.  If the big Pharma companies have nothing to gain, it will never happen because of the expense.  There you go folks.  Find your own medicine.  Plants aren’t profitable because you can’t patent them.  Synthetic drugs are the only one’s that “count” in our world even if they have toxic side effects.  Nothing else matters because someone is getting rich from this.  It is disheartening.  It is disgusting really.  Not a good day.

hairy cat fabioSo today I am itchy.  My neck is itchy.  My back is itchy.  And guess what… my pelvic region/crotch/groin is also very, very, itchy (and I don’t want to scratch there because I don’t want any weird looks from people).  There has been very little hair there since my chemo treatments five years ago and now I can safely say that what was left of my scarcely populated pubic hairs has now been successfully fried with radiation.  And my skin looks burnt brown.  Apparently I’m not suppose to have any kind of sun exposure on any of my newly “radiated” parts for at least a year; doubt that will happen any time soon (unless I decide to put nudist colony on my bucket list).  Nahhhh.   Well, at least I don’t have to worry about spending money on a brazilian wax job; it’s already been done for free thanks to medical care.  Had to buy some $50 medicated ointment for my newly parched skin.  Big pharma makes more money.  Argh!!!

Had to drag the kids to the hospital today because it was a P.A. Day.   Frick and Frack are used to it.  It’s happened before.  They refuse to go to the “Magic Castle” place where kids go while their parents have their treatments.  My kids prefer to play on their computer gadgets during my visits.  As long as I feed them pancakes from McDonald’s or buy them breakfast at Druxy’s, they are happy.

imgresdonating bloodI saw an old friend from Gilda’s Club who was getting blood work done and oddly enough, two other friends “found” me at PMH because they “recognized my white, furry, hat” and decided that, yes, that was really me.  One of them recognized “The Hat” from my Germany Pics.  I thought that was really funny.  I taught one of her children many years ago.  Another person I ran into was from my Thursday night Christian Cancer Support Group.  She said she spotted me from a mile away because of my “Hat”.  Glad I had it on!   My daughter told me that the elderly people in the waiting room at the blood lab were eying my hat too when we were in there.  Poor people.  They probably didn’t have any hair because of chemo. and needed a warm hat.  It was bloody cold outside today (- 18 or -32 with the wind chill or something like that).  My alpaca kept me toasty and warm!  I think it is quite possibly the best purchase I have ever made.  Especially today.  The city of Buffalo (just south of us) had  lots of snow earlier this week and now are experiencing this really cold, bitter weather, so the kids all got to stay home today.  They really should invest in some of these kinds of vehicles to get their kids to school! snow days

Wincrazy

Meanwhile some f*$#$ squirrel decided to jump into my chimney to keep warm last night and it cost me over $500 to pay someone to climb on my roof, install a trap door, and cover all the grates (5) up there.  Damn squirrel!   I could have bought him a couple of alpaca hats and thrown them on top of my roof for that much.  He’d have had his own cosy, furry nest.  Now I need to go back to the casino in Niagara Falls to win some more money on the slot machines.

When I got home I searched for today’s “blood work results” on my computer since they weren’t ready at the time of my appointment.  My platelets are low and white blood cell count is red flagged.  Everything else seems to be okay.  I suspect these new developments are because of my radiation treatments, although I’m not sure what to do about it except eat seaweed and soak in himalayan salts.

ebola flight

 

Guess I’m also going to have to protect myself from sick people at the moment.  Would this be considered extreme?  How ’bout I bag myself every time I go out ’til my counts go up?

 

Cat Scan

Gotta have a CAT scan in April.  Bit concerned about that since I couldn’t take my German injections while I was doing radiation treatments for 3 weeks.

 

I figure there may be some growth in my bones because of this.  My doctor however is thinking it may have spread to my liver, lungs, or brain because I’m not “on” conventional treatment.

I would like to prove him wrong….again.

Extra Dose of Radiation

aches:painsBefore I had another MRI done in late December, I knew that my C2 and T6 were starting to give me problems (and so was my pelvis).  So I decided to have some of my tumours radiated before they grew back or did any more damage.  If the tumours continue to grow (and cancer likes to do that), I can have another bone fracture.  I really and truly do not want another surgery to implant screws or metal rods in either my back again (or my neck).   Unfortunately, if any of these tumours get close to the spinal cord, I can become a paraplegic.  So I’m not taking any chances and I’m zapping them before they get too big to do any harm.  They make my bones weak too.  If I zap them, the bones will regenerate with healthy cells.

IMG_5153When I left Germany in December, the doctor told me that my cancer was dormant and has prescribed me daily injections to take.  He told me not to worry, that he had intravenous curcumin to give me if/when this stuff he now has me on stops working so I’m feeling better about staying away from the Chemo. they are offering me here that burns my feet.  Don’t want to be doing this again any time soon.

Even if the tumours are dormant, I can still feel them occupying space where they shouldn’t be.  The pain is hard to describe.  Not like a muscle pain.  It’s a deep ache in the center of your core and it’s hard waking up in pain every morning.  And when it’s in the bone, the doctors can’t tell you on an MRI if it’s dormant or shrinking because there is always stain on the MRI where the tumour was and the only thing you can determine is if it’s growing….if that makes any sense.  When you have tumours in your organs, you can see it shrinking, but in the bones you can’t because the tumour mark is permanently there.

Enough said.  Last week I spent two days zapping my T6.  I didn’t take any pain medications other than Tylenol.  It felt like I had a bullet in my back.  This week, I had 4 days of radiation on my neck vertebraes (C2, C3).  An hour after my first dose, I had 2 painful huge golf balls under my neck.  The next day when I saw my radiation doctor, he sent me to the pharmacist to get some steroids.  That was a real treat.  The steroid Dexamethsone will reduce the swelling in my neck, but it causes stomach irritation so I have to take Ranitidine for that which may cause Nausea, so I will have to take Ondansetron which will most likely give me Constipation so I will need to take Senokot and/or Colace if that happens.  Lucky for me, I’m didn’t have nausea so far.  I find it interesting that one medicine can cause you to take 4 more because of side effects.  So this week, I’m a bit wired.  Went to bed at 11:30 and got up at 5:00 the first night.  I figure after I get off 7 days worth of steroids, I’m going to crash for a couple of days.  I also gained 10 pounds since I came back from Germany.  Hmmmm.

IMG_9234My radiation day today did not go well.  The machine broke half-way through my treatment.  They asked me if I would wait 10 minutes with that horrible thing on my face while the service man tried to fix the problem.  I said, “Forget it”.  I knew they were having problems with that machine all day yesterday because I had to go to another unit.  I’m glad I got out of there because they never did get it fixed and they had to send me to Unit 2 again.  I was dying to go to the washroom anyway and wouldn’t have made it 10 more minutes to fix the problem, and 20 more minutes for my second treatment session because the steroid is making me so thirsty I don’t even have enough saliva to eat food.  My mouth is a desert.  I’m drinking water by the gallon.  The bad thing about getting me off the table was that they would have to restart the whole procedure again with a CT Scan (more radiation) so that the other machine would know which my bones were being targeted.

I was suppose to start radiation on my pelvis in that same unit (11) again tomorrow, but I told them it was birthday on Saturday and I was going to go to Niagara Falls and I needed a break.  I sure hope they fix that machine before Monday.  If it breaks again on me, I’m not going to that unit anymore.  You gotta do what you gotta do.  Kind of like last week when I went to see my family doctor for an appointment.  I waited for 2 hours and then I left.   Forget it.  I’m not doing this anymore.  What a waste of my time.  The secretary phoned me the next day and asked me if I wanted to reschedule.  I said not if I have to wait 2 hours in the waiting room.  So I’m getting the first appt in the day in two weeks.  Like I said, sometimes you gotta do what you gotta do.

All the radiation technicians I had liked my CD…. Music to Encourage Stress Relief (scientifically designed by Dr. Lee R. Bartel).  It changes you alpha and beta brain waves to calm you down and it really works.  The one day I put on another CD, my heart was racing when my treatment was over and when I went to see a nurse about it, my blood pressure was 163/107 (normal is less than 120/80).  That CD would be a good present for anyone having radiation treatments, believe me.  Even people in the hallway went up the technicians outside and asked them what they were playing.

My tech. team today told me I was done with my mask and I could have it after I asked them if they would mind taking a pic. of me for my blog.  I was thinking about plaster bandaging the thing and making a bust out of it, but where would I put it?  The nutcrackers have taken over all available space in this house.

The techs told me I have until Monday to make up my mind about the mask.  Hey, maybe I can use it for that wig I bought 4 years ago for $700 and only wore 3 times because it itched like crazy.  I could paint a Picasso on my busts face….  this is what happens to you when you are on chemo. Ha ha ha.  Eye on the side, green face.  I could donate it to Princess Margaret Hospital or Sunnybrook if I don’t have room at home to store it.  Can you imagine their faces when I walked through with that?  It’s okay.  Really.  I’m sure they already think I’m nuts.  Not sure why, but I amuse them.

fatTomorrow I go in to see my oncologist for my two shots in the stomach. My nurse, Nancy will be happy that I now have much more fat around my middle now that I’m on this steroid. I, however, am not happy with the bulge. I felt and looked so good when I got back from Germany after getting a good cleaning and a immune system boost.  Back to square one now, I’m afraid. Gotta eat a lot seaweed to get rid of some of this radiation and soak in himalayan seaweed bath salts too.

This week, I went in to school and did some acrylic paintings with the grade 6’s.  They turned out really beautiful.  I’ll have to update this blog with some of their work when I have a chance to take pictures of them with my ipad.


I’ll also try to write about my adventures in Germany soon, but I’m not promising anything right now.  It was a lot of fun traveling around.  Glad I did it.  You can’t let cancer take over your life.  You have to have fun times and appreciate it while you can.

enjoy life