Bone Marrow Biopsy

Went for my bone marrow biopsy with my sister yesterday.  Took my son’s ipad with all the games on it and hoped for the best.  When my husband has to give me my shots/injections from Germany, I play on the ipad to get my mind off of the upcoming Ouch!  Sometimes my husband gets it right and it doesn’t hurt too much, but then sometimes he gets it in the wrong spot and I’m cursing up a storm.

Anyhow, back to the biopsy.  Two needles to freeze my lower back, worth two loud groans.  Then, when the nice indian doctor thought it was frozen enough, he stuck, what I believe to be a big needle into my bone marrow (he told me I would feel some pressure while he did the aspiration), which got another loud OUCH from me!  And then for the big kicker, he had to take a piece of my bone for examination…which was worth one hell of a yell…especially when he was having difficulty getting the bone sample and he had to go back and forth to crack the sucker.  My sister watched the whole thing and thought it was cool.  I envisioned that he got something like a wine bottle screwtop and cracked my bone with it….but I don’t really know since I was trying really hard to concentrate on my game.  However,  all I could think of was just when is this going to be over.  Kept playing my game Chef’s Diner until they rolled me over and put a big bandage on it  for bleeding.  He apologized for what he claimed was the barbaric way they have to get bone marrow which hasn’t changed in 10 years.

A nurse tried to get my blood shortly thereafter, but was unsuccessful.  I asked her to try heating my arm with a heating pad which I learned from Germany…and that seems to do the trick.  Bingo, out came the blood.  When I got home later that afternoon, I saw my results on infowell.  All my blood test results (liver/kidney etc) were finally normal except the HEMOGLOBIN.  I am now getting dangerously close to getting a blood transfusion…it’s at 84 (normal is above 120).  It’s been going down by 10 every week since mid-August.

So I checked on the internet and found that one of the medications I’m on from Germany can cause anemia.  I stopped taking it today and now am, unfortunately back on chemo, which is something I really, really didn’t want to do.  I think I was taking too much Artesunat (200 mg); which is generally used for malaria in Africa, but apparently works on preventing cancer cells from growing.

I pray they don’t find any metastatic disease in my bone marrow.  Won’t know until Friday.  Hate waiting.

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Frick and Frack are quite content in their new school.  Frack is no longer coming home crying and having temper tantrums like he did when he was at the other school, so I know I made the right decision in moving.  Apparently my son’s tormentor is after another kid at his school who lives around the corner from me.  His mother said her son didn’t want to go to school and couldn’t sleep at night because he was afraid that kid was going to be in his class.  Unbelievable.  Honestly, so glad to be out of there, though I feel for this up and coming victims.

Frick is going to sign up for Flag Football, Borden Ball, and perhaps Cross-Country and is looking forward to going to Quebec this year.  She came home last week and said,  “Hey mom, I actually LIKE school”.  This was coming from the kid who whenever someone asked her if she was looking forward to going to school, would look at them as if they were nuts and  emphatically reply, “NO!”

Thankfully the two of them are settling down nicely and I take comfort in knowing that.  I am looking forward to going to the school and doing some art lessons, but the lack of oxygen has kind of got me homebound for the moment.

I hate making lunches and told the kids to make their own from now on.  I don’t see the point in sending food that comes right back, so I’m on strike.  It’s working pretty good.  This morning my ass hurt so much from the biopsy, I told them to make their own lunches because I was on drugs and was not getting up.  It worked.  The day before, they conned my sister to take them to the store to buy some snacks.  I told them only to buy healthy snacks and they essentially brought home stuff I would never buy for them, like Lucky Charms Cereal, honey donuts and something that looked like Hostess Twinkies.  This is after I made some healthy carrot/pineapple muffins (which they won’t touch).  I wonder what kind of lies my children fed my sister…Oh yes…mom will let us buy that. I’m sure their lunches were filled with nothing but junk today, but I guess I’m just going to have to accept the fact that it didn’t kill me when my mother bought that kind of junk the odd time; it won’t kill them either.

snacks

Russian Roulette With My Life

Well  tomorrow I’m scheduled in for a bone marrow biopsy because my last MRI was somewhat less than favourable.  Something is going on in my bone marrow.

Not sure how long it will take to get the results back.  From what I understand, I am going to be awake during the procedure. They are going to freeze me with a local anesthetic and insert a needle in either my back or my pelvis to get a piece of bone and bone marrow to biopsy.  I’m rooting for the pelvis because I have enough problems with my back.  I’m going to take my bottle of oxycocet and hope for the best when the freezing stops working.   I heard that it is a painful procedure.

I’m going to soon be blogging about a cancer treatment I went to in Germany in February.  I didn’t write about it because I didn’t tell my doctors what I had done.  (I was afraid I would be dumped as a patient and not considered for any clinical trials).  But the cat’s out of the bag now because I told my oncologist, so now I can share what alternative treatment I had.

Not sure if I made the right decision…kind get the feeling that  I am playing Russian Roulette with my life.  But what is done is done.

My Jamaican Good Samaritans

I had an interesting day.

I went to see my friend Punam and the little red car battery light (which was lighting on and off for a couple of weeks every time I went over a bump) glowed an angry red. Made it to her house, but was a bit worried it may not start when I went home. Phoned my mechanic who said I needed to get the car in soon because the alternator wasn’t working properly and the battery was draining. Told him I was coming soon. Went for lunch. Started the car. Everything was good.

Everything was good until I got on Highway 401 at Bayview…that’s when the car radio went dead. “Oh crap”, I thought…Now what am I going to do? Every single light on my dashboard was aglow and I couldn’t even listen to a good tune on the radio!  The car was still was running as I was coasting down the highway on the hill. I looked into the horizon and realized that there was no where really safe to stop from Leslie to Victoria Park. I REALLY wanted to get all the way to Kennedy Road because I figured at least I would be really close to Roadsport Honda. However, I was kind of thinking the steering wheel was getting a bit tight and I wouldn’t make it. “Play it safe”, I thought. “Get off the highway.” I put on the emergency flashers and made my way on the off-ramp at Leslie, only to find two other stranded motorists in a white van at the side of the road with their hood up. Remembering my experience in New Brunswick with the cop/gun at the side of the road, I figured this was as good a spot as ever (I promise I will blog that one soon…it’s a hilarious story).  I thought, “Maybe on of the guys at the side of the road has a cell phone. I sure don’t. Yes Yes, I know, I know, I know.”

So I get out of my car as other cars are dashing by while the two Jamaican guys are looking at me wondering what the heck I was doing. “My car just died”, I told one guy. “Do you happen to have a phone so I can phone CAA?” “Sure”, he said, “But the battery on my phone is dying”. So I phoned CAA TWICE only to get some pre-recorded message. “Great”, I thought, “How am I suppose to relay the message that I’m stuck her waiting for a tow truck when no one is at the other end picking up the phone; meanwhile this guy’s phone is dying as we speak. Can’t exactly leave a message and say, “Hey call me back”.  There is no phone! I looked around. There is nothing but grass around me. No Bell phone. No gas station.  Nothing.  Absolutely nothing. I’m sure not getting out of here in a hurry and I don’t think I’m going to be home when the kids get there either.

A minute later, the Jamaican guy’s tow truck arrived. “Do ya think you could call another one for me” I questioned the driver. “You need a tow?” he answered. “Oh yeah, do I ever!” I answered, “This thing is not going anywhere”. “I’ll do it”, he said. “Whhaaat?” “No I can’t do that. I can’t steal this other man’s tow truck,” I told him.” “Oh don’t worry about him”, he said. “That’s my friend”. I went and spoke to the friend because I felt really bad about leaving him at the side of the road longer, and he said “Don’t be silly, Ladies first”. He barely had any teeth. God Bless that skinny Jamaican toothless man.

I had to quickly get my car to the mechanic or I was really going to be toast this long week-end with no car. Once I got to my mechanic, I phoned CAA again. I told them I tried phoning them but no one answered and I was stuck in a precarious spot off the side of the highway. She told me to send my $140 receipt to their reimbursement office with a letter and they would pay me back.  That made me feel a whole lot better.  Got my car “fixed”…well sort of.  I got a knock off version of an alternator  (refurbished) and the red light was still blinking on and off on the way home.  Figured the radio was still on so I was good.  Maybe just a glitch.  Yeah, right.  Oh well, I have 3 more free tows left for this year because I got the PLUS membership.  Hopefully my car will behave itself until I go back next week to have it checked out.  I know it’s time to buy a new car, but I really don’t want to pay for one right now!

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All is good. Well, sort of. I was just checking my emails at the mechanics and my LTD Oncology nurse emailed me back when I told her about my heart problem (she gives me the heads up as to what my oncologist will say to me before my appointments).  Sounds like they may be looking at putting me on an “old” chemo intravenous drug from Milan called Bonadonna CMF from the 1970’s. But I’m not suppose to worry because not all my hair is going to fall out….just thinned. Really?  Really?  I don’t think so.  The thought of being hooked up to an I.V. for more chemo with a pic line (and purple hives) and a cow glove to shower with is not quite something I’m prepared to do right now.  Noooooo thank you!!!!!

Will deal with that email later….I think my car is ready!

And a special thank you to my tow truck driver Roy (from Bill and Sons Towing) and his good samaritan friends…you really made my day!

kindness

 

Celebrity In The Doghouse

Just wanted to let you know that I’m apparently going to be in the Toronto Star tomorrow (Saturday) in the Life Section.  Reporter Nancy White wrote an article about people who have heart problems because of chemotherapy and my oncologist gave them my name for an interview last spring.  Anyhow, there is a photo of me and a short blurb about my heart failure experience if you get the paper delivered to your house and you want to take a look.  I’ll try and post it on my blog once I get a copy of it.

I recently joined an art class for cancer patients in the west end.  I finally made something I liked which I’ll post on my blog too (Monet inspired, of course….can’t seem to get that beautiful garden/waterlily pond out of my head).  We’re having our last class on Monday and an art show during the afternoon.  It’s at 238 Jane St. from 3:00-5:00 if anyone is around there and wants to see.

I also joined a Graphic Novel class at Gilda’s Club on Monday nights.  I decided to do a children’s book about a Tooth Fairy because my son was intent on catching her one night. Hey, you never know, I may try to publish it when I’m done!

On Wednesday I did a video shoot for the Nanny Angel Network.  They’re the ones who sent wonderful child life specialists to my house (for free) to watch my kids when I was undergoing Chemotherapy and Radiation.  They count on donations by generous donors and the organization is having an up-coming fundraising event…so there I will be, at some point on the BIG SCREEN once again.  I’ll post the event on my blog when I find out more about it in  case any of you reading this blog is interested.

I didn’t realize that a person could become a celebrity just by having cancer!

Speaking of celebrities… the kids and I were at the Apple Store at Fairview Mall earlier this week when 3 guys from the T.V. show “Next Step” came in the store.  My daughter couldn’t believe it and was mesmerized.  The person at the store who was helping me asked her if she wanted to take a picture with them  and then got the ball rolling by using those radio speaker things they have in their ears and contacting the employee servicing the “Next Step” dudes.  Before you knew it, my kids got their pics. with them using our ipad.  My daughter was SO HAPPY….she couldn’t wait to instagram everyone when she got home.

The story doesn’t stop there though.  We were at the Apple Store to get the Ipad fixed (it got dropped way too many times and the screen was cracked).  I thought they were just going to put a new glass top on it.  Wrong.  They gave me a brand new one for $50 (I had an AppleCare Warranty on it).  That was kind of neat.  No more dents on the side or cracked screen.  I was happy.  At least I was happy until we were on our way home and realized that the pics. of the gents were on that Ipad and everything had been erased.  So I got to hear a whole lot of crying on the way home….and a whole lot of crying the next day when we went back to the store to recover something that couldn’t be recovered.

C’est la vie, unfortunately.

So if anyone see’s these “Next Step” guys again…give me a ring because seriously folks I am going to hear about this the rest of my life.  I am so in the “Dog House” right now.

aspirin children headache

Round 3

December 1, 2013

Round 3

I was determined to complete all 14 days of Xeloda because, quite frankly I’m not ready to be as bald as an eagle this winter…nor do I want a porticath.  So I got it in my head to do whatever was necessary and endure whatever comes my way.   Maybe, just maybe, my body will get used to it.

I was doing okay until about days 5 – 7.  I could feel my feet caving in, but I persevered.

It didn’t help that I felt I was getting too fat and off I went to the YMCA to try to work out.  I did 10 minutes of the bike and about 20 minutes of Arriba dancing.  My feet felt hot.

Well, low and behold, was I not sporting some lovely blisters on my feet the next day.  And then my feet started peeling.  My husband said I was shedding my skin like a snake.   But I refused to give in and go off the chemo.  Decided Chemo IV was not for me and these pills I’m taking had to work.

I started feeling really horrible one night during the second week.  I fell asleep for a while, until but my children decided to wake me up and jump on my bed.  So I screamed at them.  Bad idea.  My heart rate skyrocketed and I felt significantly worse.  Decided I was not well enough to endure a friendly visit to the emergency department, so I took an oxycocet and went back to bed.

The next morning my heart was killing me.  It felt like someone had their hands around my heart in a death grip.   I told my kids to fend for themselves because I wasn’t getting out of bed; thus they were late for school.  My heart monitor indicated my blood pressure was too high so I took a beta-blocker.  That really helped.  Brought everything down to a more reasonable level.  Phoned my oncologist, radiation and heart doctors.

So now the new plan is to keep me on this chemo. one week on and one week off, to give my feet a break.  I hope this works.  I’m still waiting for an MRI date to see what’s going on with my bones.

Yesterday, Cathy Mouzos and I took our 5 kids and Maria O’Kane’s daughter to a Christmas Rotary Party at the Royal York Hotel.  They served chicken fingers/fries, chocolate milk, and ice cream.  The kids got their faces painted and worked hard on Christmas activities.  We all had our picture taken with Santa and got a bag full of gifts.  It was a good day out.

Maria’s daughter, Samantha is a real gem.  I can’t imagine how hard this has been for her to lose her mother at such a young age (10), but she is a real trooper, just like her mom was.  Sam is going to be speaking about her mother at the memorial next Monday.  She is so brave.  Maria told me Sam was going to be okay and I believe her….after all she has a protective angel watching over her.

Dear Santa

My oncologist wasn’t there again yesterday when I went for my appointment on Friday so I requested the Mexican doctor again.  I really like him.

Told my needle nurse I was experiencing hand/foot syndrome and heart problems again (when I wake up I feel like I’m having a heart attack).  She told me to phone my new heart doctor and he would probably give me a Holter Monitor.  I’m not really interested in doing that because that thing doesn’t show much anyway.  I know I have irregular heart beats and the times when they occur.  Big deal.  It’s just an inconvenient gadget I get to carry around with me for 2 days.  I’m more interested in finding out my ejection fraction rate (how strong my heart is pumping) because I don’t want to have heart failure again.  It was a measly 42% a few weeks go and that was before the chemo. drugs.  It’s suppose to be at 55%.  That’s a bit disconcerting.  I’m hoping that the drug Bisoperol he put me on is helping with that.  The good thing is I haven’t flopped to the ground during the day because I’m taking it at night!

The doctor told me they were going to try one more round of chemo. and then check my spine to see if the tumours are still growing.  If they aren’t growing, I stay on Xeloda.  If they are, I’m going to be put on another chemo. drug, but it will be an I.V. one, not a pill. I’m hoping that my tumours have stabilized because quite frankly, I don’t want to be bald over the winter on some other drug.   I have a sneaking suspicion it will be Taxol (no hair, black fingernails) because I met someone else like me who couldn’t tolerate the Xeloda and they put her on Taxol next.  Yes, I know “Bald is Beautiful”, but it’s really freakin cold in Canada.

If I have to do an I.V. drug, that also means I would have to have another picc. line or a port, which is something else I don’t relish.  Remember the cow gloves I had to use every time I wanted to take a shower and the purple hives I got to boot?  No thanks.  This chemo I’m on that burns my feet better be torching those bloody spots on my spine too.

I asked my mexican doctor about any upcoming Clinical Trials because I wasn’t exactly loving the side effects I was having with this drug.  He said there are side effects on those trials too.

The good news is that he gave me my report on that other Clinical Trial I was on (called Impact) where they sliced my tumour and analyzed it for DNA markers.   I got the report, but don’t really know what it means.  All I know is that I have a “somatic mutation called PIK3CA C420R (67%)”.  There is a clinical trial going on right now at PMH to figure out appropriate dosage amounts for drug target therapy, but he said we have to exhaust the “standard treatment options first”.  That means chemo.  However I’m hopeful that this means there may be something  else for me in the future that can help me.

My kids are off to the Santa Clause parade today.  I should have written him a note too… Please Santa, I don’t really want to be bald for Christmas!

Christmas Cat dressed up