Day 480 - PET & Seeds

Well, today was the day. The final PET scan. The end all & be all (I pray) of this chapter in my life. I don't know the results yet, but I am holding true to the belief that my scan will be cold. There won't be a cancer cell in sight.

Mom2 & I made 'almost tuna' this morning & she said it was great. I couldn't taste it because I was fasting for the scan. We quickly got ready & left for the hospital. Part way there, I interrupted her story to make sure she knew we were going to Foothills, right? Nope. She was headed for Peter Lougheed! Whoops! We altered our course, when I noticed the gas gauge. I interrupted the story again! $10 later we were back in business.

I raised a little ruckus at the Nuclear Medicine room. I am a little upset. This is my 3rd (& final) PET scan. I only found out yesterday that if you have a PET scan, you should avoid close contact with children for 6-7 hours - preferably 12, but 24 is even better. You shouldn't travel in the vehicle with them & if you do sit diagonally (?? Because radiation travels straight ahead?!?). I was quite frustrated that no one had told me this before & I was frantically trying to remember if I had visited anyone & substantially shortened their child's life span! Why doesn't it say this on the information letter every patient receives that gives directions to fast & only drink water? I saw a young Mom with a little baby in the waiting room, so I told her & her parents. They were from Medicine Hat & headed back today! The poor Mom was upset - as if she doesn't have enough to worry about! The Tech came & spoke with the parents after the Mom had gone in to prep for her scan & he told them to go to the Mall for a few hours & take the baby with so the radiation would have some more time to dissipate. I have since called the 'Powers That Be' to ensure that this doesn't continue to happen. It's such an easy thing to solve - just write on the paper that is sent to EVERY PATIENT - AVOID CONTACT WITH CHILDREN FOR 12-24 HOURS POST SCAN. And it's that easy.

I also gave one of the Tech Assistant's a talking to. She called Mom2's at 0700 this morning. She woke the entire house up just to see if I was pregnant or not. Wake me up at that hour & I could very well be the next OctoMom! 0900 is a far more respectable hour to inquire about someone's fertility status, no?

The scan went... well, it went. The scanner malfunctioned, so I had 3 scans instead of 2. Let's just hope they don't lose these results! (I still haven't heard the results of half of my last CT scan!) Additionally, I'm very grateful I have an Oncologist who doesn't believe in scanning me every 3 months. Yesterday & today I met people whose sisters & daughters are scanned every 3 months! That's insane! Don't they know that these scans CAUSE cancer?!? It's WAY too much radiation & FAR too unnecessary! Do your homework people! Yes, the scans can save your life by finding the cancer, however, listen to your body! You'll know when you need a scan! You can have a scan every 3 months & 4 weeks after the last scan, BOOM! You get cancer. Did the scan pick it up? No. Now you've had all that radiation for what? Sorry, rant ending now.

Mom picked me up & I clenched my teeth at her herky-jerky driving all the way across town. Apparently 3 weeks away wasn't quite long enough. She left me at Mom2's, or rather, I left her talking to Dad2 while I went downstairs to find a box. When I finally found it, she was gone. I came back up to find Mom2 coming in the door. I was officially starting to panic. I was trying to calculate how much seed I would need for the next 6 months. Oh, this is going to be fun.

Mom2 & I headed out to get ready for the trip. We picked up a Magic Bullet set, seeds for sprouts, sprout bags, seaweed, sparooli, mandoline slicer, kelp noodles... I'm very excited to get (un)cooking, but yikes! It's expensive! I've never been a kitchen girl before & I guess I never appreciated the cost that goes into eating! I'm learning fast!

I loaded up the car with my suitcases & headed home. I've got a busy few days ahead of me & not a lot of time to get everything done. I've started transferring old photos to a larger hard drive tonight, with the lofty goal of editing photos whilst on the ship with Jaco. That website is in the near future! I can taste it!

Oh! The 4 tray mini-dehydrator arrived today! It's perfect! It is small enough to fit into the luggage & I am very excited to have one to take along traveling. I know it will be put to good use! I've already filled Mom2's with nuts that we've soaked. I can't wait to make walnut taco meat & scarf down some dehydrated pecans! Yum!

Okay, off to bed... I need to sleep off the rest of my 'glowing' personality & get set for my dental appointment tomorrow.

xxxxMaria & Valentina (Mom stole Oceana for the night. Glad she likes to 'play house' every now & then)

Tweet Pea & Finny come along for the ride

Here's my last sentiments on PET scans & cancer!

About to be injected!

Here we go!

Radioactive!

An hour to kill!

In we go!

All done with the donut!

Day 412 - Radiology & A Smashing Good Time

Our roaring start was more like a meow than a roar. We lost power shortly after I got out of the shower. Apparently Kevin knew it was going to go off sometime this week, but didn't know for sure. Oh well. Then the car had a flat tire. Then the Starbucks was out of chai tea, so we had to find another one.

We made it to the house in time to use the loo, drop off the girls & motor into the city. We were only 15 minutes late & then ended up waiting another 20 for the doctor. Dr. Balogh was the Radiologist I was seeing today. I had heard prior 'things' about him from past patients, but I decided to form my own opinion. He obviously believes he is very good at what he does. I don't necessarily appreciate over-confidence. A few key points from the appointment.

They want me to do a PET scan before radiation. (equivalent to 500+ chest xrays or 5 years cosmic radiation)
They want me to do a CAT scan prior to radiation. (ditto on the radiation.)
They want me to do a PET scan post-radiation. (ditto on the radiation.)

**Remember that I've already had 3 CAT scans in 2010. So simple math tells me that I would be receiving, in 12 months or less, 3000 chest x-rays or 30 years worth of cosmic radiation. That doesn't include the radiation from the actual treatment either!**

I commented on the amount of radiation I would be receiving & Dr. Balogh told me that I get just as much, if not more radiation just from living in Calgary. I told him I don't live in Calgary, I live in Bragg Creek. He said, 'Close enough, same thing.' Yeah, I don't think so.

Which brings me to my next point. Originally Dr. Daly had thought that I would have only the left side of my neck radiated. Dr. Balogh wants to do both sides of my neck, my underarm & my chest! Whoa! Whoa! Whoa! Stop the train!

I have researched & apparently radiation treatments can CAUSE lung, breast & thyroid cancer. Adding to the 30-40% chance of hypothyroidism, leading to a lifetime of Thyroxin. No thanks! The amount of breast cancer showing up 25 years or less post-radiation is startling. I asked Dr. Balogh about the stats on radiation & he said, 'Statistics don't matter to the individual'. No, they don't, but they do matter to Doctors & if they improve my chances of survival greater than the risk of complications down the road, talk to me. I don't feel that this is the case.

We also discussed several other diseases & inflammations that may lead to death shortly after finishing treatments. Pericarditis, pneumonitis, coronary artery disease - just to mention the big ones!

He had consent forms ready for me to sign. I didn't. I want to 'phone a friend' or two or three & certainly discuss it with my husband before I decide anything. At this point, it's not looking good for radiation.

I left the room feeling quite angry, like I was being bullied into radiation & that I was just a 'commoner' who didn't have a mind to think for herself. Grrr! Alas, I had one more stop in the Tom Baker before we left. I had to have the dressing changed on the Picc line. Luckily one of the nurses were able to help me. He washed it with saline & put a new kind of tagaderm on it, with some kind of barrier on it. I'm hoping I'll make it through the weekend without any problems!

Roxy & I drove to Journey of Health next. It's a raw food store & we were both excited to go there. Unfortunately the owners didn't impress us much. They have a decent selection of goods, but the lady was on the phone screaming at a Travel Agent, at a desk right by the entrance. The man tried to hook me into a network marketing ploy to sell the ORIGINAL Chi Machine - within the first 10 minutes! Why are people always trying to sell something? I won't be back for awhile! They have good books, but their raw chocolate is terrible!

We decided to go for dinner after that. We ended up at the Broken Plate. They have wonderful Greek food, which Roxy hasn't eaten that much of. We ordered a jalopy of appetizers & a Horiatiki salad. At the end of the meal, Roxy broke a plate for her birthday. She was very apprehensive to do it, thinking it a waste of a good plate, but when the Server told us why, Roxy changed her mind. It feels good to smash a plate every now & then! If you haven't done it, grab your friends & head on out to a good Greek restaurant, enjoy some calamari, hummus & dolmades & break a plate to celebrate afterwards. Maybe you'll get lucky & see some belly dancers while you're there too!

I got home around 8 pm, absolutely shattered (like the plate!). I packed up my things for the weekend, as I am staying with Mom2 & we are taking a course together. It will be a long weekend, with chemo waiting at the end of it! Joy!

Sleep well, for tomorrow we learn!
xxxx Maria & the Girls & Adios

 The Beautiful Birthday Girl!

The Plate about to be smashed!

Video of the smash: (kind of. I'm a poor Videographer!)

Day 389 - TSA Frustration & Wolves! (AGAIN!) (Happy Dance!)

Today I managed to Skype with Jaco for quite awhile. I sure do miss him! It was great to hear his voice. He is quite busy these next few weeks while he is at home. I hope he can squeeze in all he needs to get done!

I also visited with Kim, a friend from ships. We haven't spoken for a few months, so I suppose we were overdue! I also visited with Mom2. We are planning to re-audit our Level 1 of Personal Best. I am looking forward to this, as I need a jump start to get back into the swing of things once I am done with chemo. Personal Best is a course I took 10 years ago & it changed my life. I highly recommend it if you're in the Alberta area. Our course begins December 10th & runs until the 12th. I'll keep you posted on how it goes & if I decide to run for Prime Minister afterwards!

Did I mention that it's been snowing since last night? Ugh. I am not ready for winter. I know, I'm lucky, as it's the middle of November, but come on! Who loves the white stuff & the icy stuff on the roads when you need to get things like toilet paper & food? I shouldn't have to risk my life to survive. Yeah, I know, you can make sense of that last sentence... But you know what I mean! Well, at least those of you living in Canada do!!! Yuck!

I fell asleep at 1930 & woke up shortly before 2100. Uh-oh. Yup, you guessed it. I couldn't fall asleep. Again. This time I occupied my time with blogs, news posts & YouTube videos about the atrocities regarding the TSA in America. It is ridiculous. I am so fed up with this terrorism B.S. & the so-called 'rights' of the governments to treat us like, well, I don't even have a word for the pathetic way they are treating us as human beings!

Supposedly the radiation & health hazards from both back-scatter x-ray scanners & millimetre wave scanners is worse than they originally indicated. They can & will cause skin cancer, they can make tumours grow more rapidly... I mean, honestly, the technology hasn't been around for that long - how can they REALLY know how bad they are for you? Adding to the fact that the former head of Department of Homeland Security has a vested interest in the installation of scanners all across the US. He stands to earn a lot of money from each of the scanners installed!

Well, you can refuse the scan, you say? Yes, you can. But then you get the aggressive pat down. What's that? Yes, your genitalia will be touched. Not with the back of the hand, but the palm & the fingers. There are instances of passengers who have had the hands of TSA agents DOWN THEIR PANTS! They dig under your bras, up & around your groin - and if you refuse this, you don't get on the plane!!! How is this right? I am horrified to travel! I don't want to be molested, but I certainly don't want to be subjected to excess & unnecessary radiation! This is pathetic! Where are our freedoms?

For those of you saying, 'Well, it's for your own safety. There could be a terrorist attempting to get on that plane.' Tell me why we can't profile like Israel? Why isn't there stricter enforcement of people on no-fly lists? Better background checks? Sniffer dogs? Puffer machines? There are so many other options besides aggressive pat-downs & radiating scans. Come on!

If you want to try to do your two bits worth, sign this petition: http://www.PetitionOnline.com/airline/
And please feel free to google any of this information if you feel I am overreacting. I guarantee you, it's real. And if you think your children are safe from the radiation or molestation, think again. They are getting it too. It's just not right.

Thankfully my night of nightmare flying was interrupted by the most beautiful sound in the world. I am in love with the wolves. They are back. I am so excited! This is a magical place! My Mother wants to leave it, but I would gladly stay, knowing that I could potentially hear the wolves each night. It was so mesmerizing that I actually bundled up & went outside to record their howls. I leaned against the car & listened to them. They were all around me. One was south of the house, one was across the pasture along the tree line to the southeast & another directly across from the house to the east. It was amazing! Of course, once the howling stopped & I realized that they are pretty much silent enough to sneak up on me, I got scared & came back inside. It was also somewhere between 0430 & 0500. Nonetheless, I wouldn't trade one second of it!!! Pure Magic! I feel so blessed to witness the sounds of howling wolves outside! I think they know how lonely my heart is & they came to sing me a song... :o)

Enjoy & pardon the poor recordings. I hope you can hear it well enough to appreciate it! The initial crunching is my feet walking down the steps outside in the cold snow.

xxxxMV&O

Personality of the day:

Meet Katy

Day 203 - Long Day in the City.

I suppose 13 is an unlucky number for a number of reasons. I've been fairly stressed these past few weeks. Can anyone understand why? I hope so! I had my first appointment at 1000 & my last appointment ending at 2200. Yes, that's 12 hours in the city & most of it spent in appointments. 


Mom decided she wanted to come along to see the Oncologist as well, so she drove. After 12 hours of her driving, well, let's just say that she has an awful lot of Angels watching over her. I have never seen anyone fail to signal, roll through stop signs without checking traffic, take so long to decide just which lane they are going to drive in or merge while doing 40 km/h. Oh my. I hate driving & I know I shouldn't complain, but I'm just sayin'.


Anyhow my Backseat Driving Vent is now complete. The first appointment was my lung function test. It was in the Foothills Hospital at the Pulmonary Lab. I had never been there before, so I asked for directions at Information. 'Oh yes, just take the elevator down one floor & head in the opposite direction.' And she points towards the Special Services building. Away I go. I walk. I walk some more. I keep walking. Still walking. Pretty soon I'm at the Nuclear Medicine desk where I was 2 days ago, which is on the border of Special Services & Tom Baker, so I know I'm totally lost. 


I ask the girls at the desk where EG3 (Pulmonary Lab) & they send me back the way I came in the opposite direction, PAST the elevators & my first left. Okay, it was my Hospital Marathon for the day. I think Information needs to talk a hike on their lunch break & learn the hospital instead of surfing on Facebook!


Eventually I find the lab. It didn't take them long to get started & the Tech was really nice. I sat in this shwanky glass cubicle & was given a new mouthpiece & a set of nose plugs. I did a lot of blowing. It was pretty interesting, but quite challenging. I don't have the length of breath that most people have. My lungs are healthy, but I'm shallow. (We knew that already!) :o) I couldn't complete the test time. (Yes, I'm freaking out a little) (I'll explain why in a little bit) The Tech assures me my lungs are fine & away I go.


Mom & I have blood work done next. The Tech there was also nice, but OH MY GOODNESS!! She slaughtered my arm! She saw my vein from the MUGA scan & said, 'Oh, you have a bruise. I better use the other arm.' I told her I had a hardened vein, so just be cautious of it. I think she used that exact vein. Either that or she completely shattered it! I was nearly in tears from the agony! OH MY STARS!!!! I could hardly bend my arm or lift anything for the rest of the day! What will tomorrow be like? To make matters worse she had to take several vials & the thin vials didn't want to fill - probably from the horrible job she did on finding a good vein! Because it didn't want to fill, she had to keep changing vials, popping them on & off, thus jarring the needle in my arm again & again. Ugh! Brutal! Where's Emily & Mika when I need them? The Nurse's from Castillo's clinic are far more skilled!!!! And much more fun to be around! :o)


Okay, next stop was Market Mall for a few things, then Costco, Ikea, Superstore & then back to the TBC. I had my appointment with the Oncologist at 1600. I was expecting him to try & talk me out of IVF & into starting chemo right away. Which was precisely what he tried to do. He told me I had a 94% chance of fertility after chemo. Wow! Impressive number! But when I asked for websites or papers, he didn't offer anything. When I asked about my heart & lung function tests, things took a shaky turn. I asked when we would do the next set of tests to see where I was at, he said we wouldn't be scheduling anything. He said I would let him know. Excuse me? How would I know? 'Oh, you'll know. You'll let me know,' he said, over & over. Great. So when I've got symptoms & it's too late to stop the damage before it starts, then you'll do a test, just to make sure? No, no, no, no, NO! Not acceptable for me!


He looked at my neck & claimed it had doubled in size since he saw me in March. I wasn't arguing with him, as it was quite 'cranky' right now & was definitely bigger. I think double might be exaggerating a bit, but... He said he also wanted to a month of radiation when I finished the chemo. After I picked up my jaw off the floor, I said I didn't like the sound of that. He said they radiate all tumors larger than 10 cm. I don't have tumors larger than 10cm. Okay, so collectively they are 10+cm, but that shouldn't count! According to him it does! 


He also tells me that he wants to do another CT scan. Ugh. Can't I do a PET? No, that's a PET-CT scan combined, so more radiation! Great. No wonder the cancer isn't going away... That will be 2100 chest x-rays in 8 months. February was the last one - which, btw, didn't show much, if any, growth, now this one & then again in 3-4 months. Then a month of radiation when I'm done?! No wonder it comes back!!! Grrr! I need a Lead paint job before I go back! :o)


I told him I would be ready to start treatment as soon as the egg retrieval is finished & he asked for it in writing. :o) At least he's getting a sense of humour along this long drawn out journey!


Btw, I've lost 10 lbs in the past 6 weeks. I'm not looking for it, so if you find it, DON'T BRING IT BACK TO ME! 


Mom & I went to CNF & then Jugo Juice for a wrap & smoothie. Jaco called & I chatted with him briefly about the appointment. Then it was time to go back to the hospital for the IVF Information Session. Mom dropped me off & headed to Neil's for prayers. 


Luckily, on my Hospital Marathon earlier today, I passed the auditorium twice, so I knew exactly where I was going! I was stunned! The room was packed! There must have been 50-60 people there! I had no clue infertility was such a huge issue! It was crazy! Dr. O'Keane, an Irish Doctor with a great sense of humour, gave the first portion of the talk. Then we heard from the Pharmacist, a Psychiatrist & a Nurse. It was fascinating! I was mesmerized by the obstacles that science has overcome - incredible! What an amazing job! The chance to give loving couples the chance to have a child of their own & the amazing ways that people have actually created to do just that! I had no clue what I was getting into when I agreed to do IVF! 


Check out their website: http://www.regionalfertilityprogram.ca & be sure to check out Dr. Foong. That's our Doctor. If you know someone who needs help, it's a great place to go! I did have the urge to stand up at the session & yell, 'I sell healthy maxipads - come see me later!', but I didn't. :o)


The session finished earlier than planned, so I called Mom & she had just left. I waited about 20 minutes for her to arrive, and while I waited, I played the Flag Game on my iPod. You gotta try it! I'm obsessed! I am learning the flags of the world. It's addicting & it's a free app... Pretty soon Mom arrived & we were on our way home. Finally! What a long day!


Before I bid you goodnight... A little more information on Bleomycin in my own understanding, which may not be scientifically correct. Correct me if I'm wrong. Bleomycin causes oxygen toxicity in 10% of patients & Pulmonary Fibrosis in 1% of patients. Basically is causes scar tissue in your lungs & if you are administered oxygen, say in surgery or while scuba diving, the scar tissue doesn't stretch like regular lung tissue. You can dive down like you normally would, but upon ascent, the lung would rupture & you would die. There is no cure for Pulmonary Fibrosis & if you get it, you're toast in about 5 years. Before you get Pulmonary Fibrosis, you'll get Pneumonitis. Guess what they treat Pneumonitis with? Yup, Prednisone. Everything about this drug just tells me to run away. Fast! 


When I got home, I googled Bleomycin & managed to find a study questioning the validity of Bleomycin in the ABVD protocol. You can read it here & tell me your opinion. 
ABVD & Bleomycin Study
Basically the people who were taking ABVD & had complications with Bleomycin stopped it. They continued with the AVD. At the end of the study, the people who took all 4 drugs for 12 rounds had a 91% success rate. The people who stopped Bleomycin part of the way through had a 90% success rate. 1% is about as identical as you can get. Lance Armstrong also opted out of Bleomycin. He did take Ifosphamide instead which causes a lot more nausea & vomiting, bladder issues & potentially Leukemia down the line, so no, I'm not taking that either. 


I'll keep researching & get a second opinion if time allows. Wish me luck on saving my lungs & my life! Sleep well - I know I will!


Maria & Valentina
xoxoxoxooxoxoxoo

No photos from today... Just this one of my favourite Physician & my favourite little girl!