Day 228 - Receptionists.

This morning I continued my quest to find out more & more information. The Oncologist's nurse called me back & was quite friendly. I still hadn't started the fertility drugs, so my start date of 18 June wasn't looking promising. My stressful day yesterday was feeling further & further away! She informed me of my Doxorubicin dosage, which I will need to clarify if I take the same dosage all the way through or if it fluctuates. If it does, that is great news, because if it doesn't, I'll be nearing the lifetime dose! Yikes!


She also told me my WBC last time was 8.9, which is normal. I asked about the Sedimentation Rate (ESR) & it said on the report that my blood didn't clot... Which I call a great big bull poop on, as my blood clots fine. If you recall, that was the day I had the lady who used my hardened vein, couldn't get a good flow into the vial & had to change the vials a bunch of times. She didn't take enough blood to do the test! Grrr! I'll make sure I get someone different next time. 


The Nurse bumped me to the end of the day's appointments, as I had a lot of questions for the Oncologist. She was very understanding & said that it was okay that I wanted to find out as much as possible. She said it was my life & I had to make the best decisions for me. I was impressed that she said this! Of course, it will still be a challenge to convince the Oncologist that I don't need another CT scan & Bleomycin...


My next call was to Dr. Lategan. He is the Oncologist that my friend Andrea went to. He is South African & arranged for Andrea to be treated at Peter Lougheed instead of Tom Baker. She said he was really nice & pleasant to be around. When I had spoken to my Oncologist's nurse, she mentioned that the Oncologist would be gone for the month of July. I thought I would take the initiative to find out if Dr. Lategan was taking patients & perhaps I could ask my Oncologist if I could be seen by Dr. Lategan for the month he was away. Oh my, oh my... did I get an earful. I'll include the conversation at the bottom of this post.


I was completely stunned. I felt like I'd just stepped out of a bad movie scene or experienced something out of the twilight zone. I have NEVER had such a rude interaction with anyone, even the grumpy passengers I used to have to please on the ship were angels compared to this gal! I was so upset! I called the Medical Registry to find out the procedures for filing a complaint. I found out (the next morning) that if I filed a complaint with the Medical Registry, it would be filed against Dr. Lategan. I don't really want to do this, as I've never met him, but I'm sure he's very nice. My other option was to notify Dr. Lategan of his receptionist's attitude & let him deal with it. I will definitely do the latter, but I'm waiting to see if he'll even see me first! I did send him an email telling him of my intentions, with a small comment about his receptionist's 'ill' behaviour. 


When I spoke to Jaco about it later on, he agreed that the behaviour was over the top & very uncalled for. I felt better, hearing that someone else thought the lady was crazy!


Lawrence stopped by & boosted my car, so I'll see about a quote tomorrow to have the repair work done from the accident. Poor Contemplate! She's no bumper car! 


I spoke with Jenn, finally! She's a busy girl! Sadly, their financial support has fallen through & even though she is working, it's still not enough for them to make ends meet. Mike's paperwork to work in Canada most likely won't be finalized for another 3-5 months, so if you know of any odd jobs & handyman work, leave her a note on the blog. I feel terrible for them, as I can't imagine what it's like to finally have some stability in your life, only to have it pulled away as quickly as it came! 


Her husband, Mike, is traveling to Texas this week to collect the rest of their belongings & bring them back to Canada. Jenn will meet him on the weekend in Montana & then back to Cochrane. She is on her own this week, so I told her if she needs any help, let me know! I haven't babysat since I was 14, but I'll do my best! :o) 


Today was another rainy day, with a nice dump of hail. It did stop raining by the end of the day & the clouds were pretty amazing. I'm still waiting for the heat of summer to come. I love the sunshine! What can I say?


Enjoy your evening... I am!
Love & hugs,
Maria & Valentina
xxxxxx

At least it's not snow!

Little pea-sized hail

Mr. Bull is taking a pelting!

Pretty clouds!

Tucked in bed

Also tucked in bed!

------------


Here's a recap of the conversation & tail end of my letter to the Doctor:

The receptionist didn’t identify herself & seemed reluctant to talk to me from the moment she answered the phone. It wasn’t until she informed me that I had dialed her direct line that I understood her reservations. I told her I’d found the number online. When I asked to speak with you, she inquired about who I was & what I wanted. I explained my situation and she was immediately defensive.

I asked if you were accepting patients. Her reply was laced with exceptional sarcasm & rudeness:

“Well, you can’t just make an appointment. Your Oncologist would have to discuss it with Dr. Lategan & they would decide what would happen.”

I explained that I was aware of that &, as I had been informed before, I wanted to know if you were accepting ANY patients at all.

Rather than typing impatient, sarcastic, rude, harsh, aggressive & nasty over & over again, just keep in mind those tones for the duration of the conversation.

“Yes, he is taking patients.”

My next question was an inquiry as to how long you’ve been practicing medicine.

“Well, I don’t really see how that is relevant.”

I explained that I certainly did & obviously you are qualified, but I would also like to know how long you’ve been practicing for.

“Long enough”, was her reply.

Okay, is long enough 1 year, 5 years, 10, 20?

“I really don’t see where this is going”, she said. She eventually said she thought you had been in Canada since 2001.

I explained that I have taken the initiative to research & find out as much information as I can about my treatment & that included the Doctors. When she didn’t want to share any information, I asked where I could go to find out.

“The Medical Registry.”

“Okay. Do you have a number?”

“No, I don’t.” Nor could she offer anywhere to find a number.

I then chose to inform her that some of the receptionists I’ve encountered have sure made things difficult. She took this very personally. She made sure I wasn’t indicating just her. I told her, no there were several receptionists that were difficult to deal with.

“I’m NOT a receptionist. I’m a Medical Secretary.”

She went on to explain that there was a difference & she has been doing this job for 28 years, at which point I brought to her attention that it was a bit odd that she could tell me the number of years that she has been working, but could not elude to the number of years that you have been practicing!

After that statement she told me, “You know, I really don’t like where this conversation is going.”

“I really don’t like where it’s come from!” I replied, in complete & utter shock!

At this point she terminated the conversation abruptly.

Additionally, at some point, she asked for my name. I gave her my first name. She asked for my last name. I gave her my married name, which is not on any Canadian paperwork. She inquired about the number I was called from & why it was a different last name. I didn’t bother to tell her I wasn’t calling from my regular phone. When I asked her name, she refused to even share her first name, citing that it was for ‘Privacy reasons’.

I understand that everyone has bad days. However, considering the job she does, she should be accustomed to dealing with people in a FAR GREATER compassionate way than what she did with me. I am fairly tough skinned, but I don’t appreciate being disrespected for asking a few simple & completely relevant questions. There is no reason why I should be treated by a complete stranger. I have every right to inquire about someone’s experience, especially when my health & future are at stake.

If I were a Stage IV cancer patient with a few months to live, that stressful phone call would have cut out a month for certain! That is one of the reasons why I wanted you to be aware of her unacceptable conduct. I would hate to have anyone else go through the same experience that I did.


--------------


What do you think? Was I out of line or was she just plain rude & crazy?

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!

Day 190 - Roseau, Dominica

Argh! Another migraine this morning! I’m not sure what’s going on with these headaches, but I’m pretty fed up with them! Two in a week!? I was sick to my stomach with this one as well! A wave of nausea washed over me & then it was time to make a move! Shortly after I was done being sick, the auras came along. And shortly after that, the pain settled in. I was hot & cold & hot & cold. I finally fell into a deep sleep around 1000 & woke up at noon.

Jaco & I had planned on visiting Champagne Reef. We still managed to head out, just a little later than expected. We found a taxi driver, Avon, & he agreed to take us on the 15 minute drive out to the location. Valentina was allowed off the ship, so of course, she came with us. We headed down the steps & along the boardwalk, trying to pick a good spot to enter.

I scuba dove Champagne Reef on Valentine’s Day in 2007 & it was amazing! I saw my first seahorse here! I also ripped the butt out of the Divemaster’s wetsuit, but that’s another story! Anyhow, Champagne Reef is very unique. The gases from below the Earth’s surface escape & travel through the water as bubbles. Since the gases are warm, you feel like you’re swimming in a bathtub & when you add in the bubbles, it looks like you’re swimming in a glass of champagne! It’s very unique!

I wanted Jaco to experience the same thing & so here we were! We didn’t have snorkels or fins, only masks. Jaco is a strong swimmer, so I knew he wouldn’t have a problem. I, on the other hand, am not a swimmer, at all. I waded in to the chilly water – brrr! It was overcast today & raining off & on, making the water extra cool. I plopped my head into the water to have a peek & to my surprise, there were plenty of fish right there! I didn’t last long though, as the little fish kept nipping at my legs! Eew! If I had my snorkel gear, I could have swam away a little quicker, but no luck. Jaco swam out & took a few photos. He managed to find an area with bubbles coming up & spent some time investigating. I was happy he was able to experience it!

As usual, Valentina didn’t enjoy the water in the least. I put her on a big rock & she didn’t like that either. She was plum happy to roam around, sniff & mark her turf! She wasn’t even interested in her ball today! I think I will be understating it, when I say she will be happy to be home… But when I saw the photo of 3’ of snow at home, perhaps she wouldn’t mind the sand & sea a little longer! :o)

We drove back into town, enjoying wonderful conversation with Avon. He voice sounds like Morgan Freeman, with an accent. He told us of his daughter, a Doctor in Atlanta & his son, an IT Specialist, also in the USA. We discussed politics in South Africa, life in the Caribbean & Dominica. He was very interesting to visit with.

Avon dropped us off at a fabric shop. I had been there in 2007 & purchased some beautiful African print fabric. It is still in the plastic bag I received it in, but one day I will sew something with it & the new beautiful fabrics I bought today!

While I was having the fabrics measured, the lady helping me asked me about my neck. I shared a little bit of my story with her. I shared my eczema issues & she immediately grabbed some paper & scribbled some things down on it. She directed me to the nearby pharmacy where I could find it. While she was telling me about the products, her friend came in & commented on one of the fabrics I selected. She said she was going to come back tomorrow & pick up the fabric & have a dress made from it. When she heard I was after some special goods, she said she’d take me to the pharmacy to help me out. Wow! People here are so friendly & helpful!

On our way to the Pharmacy, she tells me that she used to live in Barbados – for 30 years! The lady in the shop was her good friend before Barbados & now after too! She took me in to the Jolly Pharmacy & we picked up 3 bars of Carbolic Soap & some Common Vaseline. When I inquired about a wig, she told me to wait until tomorrow & head to King Shepard’s or Cave Shepard’s. Apparently there is a wig shop there with better prices & great selection! Marvelous! I thanked her for her help & the insight for tomorrow & she was on her way.

I headed towards the ship, but was distracted by another shop. It was a beautiful boutique with great hats, jewelry & clothing. And everything was 50% off! Ha! I finally found a collapsible beach hat that I like! While I was paying for my things, I told the lady the hat would be covering my bald head in a few weeks. I shared my situation with her. She was so compassionate. She grabbed my hands & said, ‘You poor sweet thing!’ She then shared with me that she had recently experienced Guillain Barre Syndrome, which she caught from a certain type of fish. Fortunately hers was ascending, or possibly descending, one is less harmful than the other, but is was still something to cope with! She demanded my contact details because she wanted to know how I was doing & gave me a giant hug when I left the shop.

As I walked back to the ship, I was flabberghasted to reflect upon the kindness & generosity shown to me in the last hour. Wow! What a place! I look forward to returning to Dominica one day soon!

Once back on the ship, I paid the $4 fee for Valentina’s permit, visited with the amazing lady responsible for arranging Valentina’s permission to go ashore & picked up some postage for a few postcards. I headed back to Jaco’s office to see what he was up to. I then realized we needed to call my Oncologist if we were going to get it done before the weekend. To my amazement, all Jaco had to do was say ‘This is the Doctor phoning’ & they patched him right through.

Most of my questions were answered & my only disappointments were the travel restrictions. The Oncologist said I should not travel. At all. I am going to clarify, as I have a feeling he is thinking a long journey to Africa & not a quick trip to Victoria… We’ll see! My next issue of concern is the Fertility Clinic. I’m not sure what the charges will be, but I have a guesstimate that it will be around $10,000.  Jaco will have to leave a ‘specimen’ in Fort Lauderdale, have it frozen & flown to Calgary. Then I would have to take some VERY expensive drugs, have anaesthesia to harvest eggs & then have an embryo made. I’m not sure if there will be time before I start chemo or if there will be money available to do all of the above.

So, there are a few more things on my mind than just wigs! On a nice note, Valentina saw me getting ready for bed tonight & crawled right into her kennel all on her own. What a good girl! Oh, she has also started ‘intercepting’ Jaco & I’s kisses. As soon as she sees or hears us kissing, she has to jump up & add her kisses to ours. I told Jaco tonight, he better be careful… One of these times he’ll mistake her tongue for mine! Ha ha & gross at the same time!

On that note, here’s a few sloppy, wet kisses… Lekker slaap!

Maria, Jaco & Valentina

xoxoxoxoxoxoxooxoxoxoxox

En route to Champagne Reef

Papa rescues Tweet Pea

Do you think she's missing snow right about now?

Tiny bubbles

Ouch! Urchin anyone?

Here fishy, fishy, fishy

We always have stunning weather when we set sail

Beautiful blue skies

One last look at Dominica.

Day 183 - Sea Day

Well, I suppose I had my share of sun, sand & sea these past few days, as I slept quite late today! I do love a good sleep-in! Even more exciting was the fact that Valentina used the potty box! I got her started (expressing her bladder) & then she finished up the job! Sadly, she didn't go again & there was no #2 involved, but tomorrow's another day! She's pretty much on the ship all week, so she had better get used to it!

Her & Papa are bonding wonderfully. They cuddle & play all the time. It makes me laugh - Jaco & I will share a kiss or two & as soon as her little ears hear the smooching noise, she's right in there, licking our faces! Every time, without fail! :o)

Today, I also finished my last & final expense sheet for bankruptcy! I am official finished with my bankruptcy! YAY! Celebration!!! If all goes as planned, I shouldn't be hearing from the Insolvency company again! Let the rebuilding begin! I also found out I had a parking ticket… You remember the post right before I left for Mexico this last time? I was running around downtown Calgary trying to pay my speeding ticket? Well, those little turkeys tried to ding me with a ticket! I had Mom's truck & accidentally entered in one of the incorrect numbers on the license plate. I entered 'RXY 221' instead of 'RXY 721'. You'd think they would pick up on that, as it's only a one block section with only a few parking spots. Nope. They sent me a ticket. Luckily I had printed receipts both times I paid my parking. We scanned them tonight & sent them off to Mom. Hah! Take that Parking Authority!

I am also pleased to report that the eczema is pretty much gone from my forearms, bicep & belly. BUT. I am NOT pleased to report that I have a far more intense case of eczema breaking out on my feet, calves, wrists, chest, back & knees. Ugh. It is brutal! I'm quite sure it's the chlorinated water on the ship, but it's pretty hectic itching! I had a good sand scrub yesterday in Aruba, but I can tell it's going to need a whole lot more to get rid of it!!! The old stuff was patchy & scaly. The new stuff is bumpy & blistery - like pickle skin. How sexxy! 

I called the Oncologist back home today, but unfortunately he is away until Monday. I also called Mom. Still no Annie in the picture, but she did tell me about a nearby kennel. Why would you need a kennel when you don't have a dog? That's like having braille on a drive through ATM. No really, it seems to be a recurring joke in my life these days. And it's seriously true! How many blind people drive? I get they need money, but really? 

It's been a little 'queer' these past few days. As I sit in this beautiful big cabin, typing my long overdue blog posts, I glance over at the 'Officers Telephone List'. It reads - 'Staff Captain - Nick Boon' & 'Seco (Security Officer) - Jane Boon'. What's so queer about that? Well, Nick was my first 'ship boyfriend'. He's now married to Jane, a former ships Assistant Shop Manager/Former Bobby (Cop) now Security Officer. They are no longer on the ship anymore, but it just seems weird that they were here shortly before I arrived. I haven't spoken to Nick in 3+ years. I thought we were good friends, but one day he emailed me & asked me to never contact him again. Bizarre. I think his fiance/now wife had some control issues. Anyhow… Thank goodness that is part of the past!  

Tonight we watched sports. Yawn. Then we watched The Hangover. Or rather, I watched the Hangover while Jaco & Valentina slept. They are both so adorable when they sleep. Did I mention my husband is a dead ringer for Christian Bale? Only Jaco can save your life too! :o)

Okay, I better stop tooting my horn & get to bed… Love & hugs… Tomorrow is Montego Bay. Man, this cruise is like living that Beach Boys song - Kokomo… 

xxxxx

Maria, Valentina & Jaco (Yaah-ku)

Beach bums catching up on zzz's

Looooooong day at sea!

Papa keeping an eye on Tweet Pea

Day 165 - Seriously?

Well, I'll keep today's post short & sweet, as it was so NOT what I was expecting to hear. 


I met with the Oncologist today. Yup. 6 months. Every 2 weeks. Full dose. Yup. The EXACT same thing as Canada. ABVD. Hmpf.


Ain't that just a kick in the pants. No guarantees on fertility, no guarantees on my heart or my lungs or the numbness or tingling in my fingers & toes. It's not about the hair loss, believe me, I'd be happy to get rid of the hair on my face & my legs :o) & I'm cool with wearing fun wigs - purple, green, blonde, red head... It's the other stuff I'm not so fussed about! 


I took the last shuttle back to the clinic & managed to meet a couple who were leaving Dr. Donato's clinic. The husband had been given 6 months to live with an inoperable tumor on his aorta & was sent home. They found Dr. Donato & that was 1 year ago. The tumor has shrunk by 75% & the cancer is gone from his lungs as well. 


I am encouraged & feel like there is still hope left. I meet with Dr. Donato on Tuesday of next week & I hope & pray that I can conquer this without the full blown dose of chemo for half a year! 


I returned to the hotel & went to bed. I was wiped. It's been pretty draining, both physically & emotionally. I have been quite stressed these past few months & when I'm here on my own, I'm finally able to let go. I slept from 1800 until 2100 & then thought I should wake up & make something to eat! Of course, then I I couldn't fall asleep! Again, silly American TV - Cake Boss - have you seen what they do? Wow! 


Anyhow, here's to a brighter & better day tomorrow!


Love & hugs & healing,
Maria & Valentina
xoxoxoxoxoxoxox

Hiding in the blankets

Sneaking a nap in!

Day 154 - Speedy Gonzalez AKA Contemplate

After an exceptionally short night, I found myself somewhat coherent about 0900. I got up to let Valentina out & by the time I came back in Collet was up too. We chit chatted for a bit & then Ezra woke up. He was not too happy to be up - until he saw 'Nini'! 


They played & played & played all morning. It was fun to see the two of them getting along so well! I was amazed at Ezra's growth. When I saw him 2 weeks ago, he was saying words. Now he's saying sentences! My goodness they grow quickly!


Collet took me for a tour of True Hope. Dave's family has this incredible history of helping people with illnesses of all sorts. What began as a solution for bi-polar has evolved into, well, how about you just check it out... http://www.truehope.com I take several of their products to give my body the nutritional support it needs & I've heard so many amazing stories of the products helping people with depression, Parkinson's, MS, cancer, Cerebral Palsy... It's incredible!


I was shocked at the size of the office. Completely not what I expected, but it's always nice to have your expectations exceeded! My only disappointment... No Mac computers. Sigh. If they only knew that ALL of GAP Adventures computers are Macs & they have 5 concept stores in 3 different countries plus head office! Once you go Mac, you never go back. :o) (Just a little dig for the IT boys at True Hope!) Everyone who worked there was friendly & fun. I guess it feels good to know that you are making a big impact in so many people's lives, health & vitality! Bring it on!!!


We returned to the house & I packed up the car. I woefully hugged the family goodbye & made my way towards Calgary. (3 hours late!) I had called the Oncologist's office & told them I was running behind & could I squeak in at the end of the day. She told me to get there as quickly as I could. I left at 1500 & by 1633 I was entering the south end of the city. It took me well over 1/2 an hour to get to Tom Baker. Crowchild was at a stand still. So much for making good time! Luckily the Doctor was still there when I ran in! 


He told me to have a seat & wait. Wow. 3 hours late & I still get to wait! Imagine what the parking bill would have been had I been on time! :o) 


Well, I must say, he drives a hard bargain. I brought up the comments made from the previous week with the other Oncologist...

• Q:If I do 1 month of chemo & the tumors are gone, why am I still doing 5 more months of chemo?
• A:Well, we have to be sure we get it all & sometimes these cells lie dormant.
• Q: If you do a scan at 3 or 4 months & it's clean, why do I still need another 2 months?
• A: (see above)
• Q: The other Doc mentioned they are doing studies &/or tests to see if they can shorten the time/amount of chemo given. Can I get in on those studies?
• A: Well, we don't have any studies being conducted here, but I tell you what. You can do 6 months of chemo (no variation in the dosage) OR you can do 3 months of chemo followed by 3 months of radiation. We'll do radiation on your chest, underarms & both sides of your neck. 
• Q: Do I look stupid?
• A: (Don't worry, I didn't really ask that question, I just thought it REALLY LOUD in my head!)

The Doc also said the last 2 months of chemo are usually the toughest with the worst side effects. I'm thinking to myself... 'Duh! That's because there isn't any cancer left to kill! You're killing healthy cells!!!!'

Sigh. I then proceeded to tell him that I wanted to see my husband before I started chemo. Either I go see him or I wait until he can come to see me. The Doc proceeds to tell me that it's time to put me first. The cruise lines can find another Doctor to fill his spot. What the Doc doesn't quite understand is that Jaco would have to sign off own will, pay to fly to SA, get a visa, pay to fly to Canada & have no income while he was here & obviously nor would I! So the Doc says, give me his name & date of birth, I'll write up a letter & we'll send it to the Canadian Embassy in South Africa requesting an expedited Visitor Visa so he can come here. (!!??)

Next he says, 'Is money an issue?' We can put you in touch with a Social Worker who can put you on disability & get you some income to help out.  I'm beginning to think, 'Is there anything this Doctor can't do?'

Anyhow, he knows I'm stubborn & I want to think things through, so I politely tell him I need time to think about things. He tells me he wouldn't expect anything different, but that he wants me in treatment by the end of April. Oh please God let me find something that works between now & April 30th!

I leave the hospital at 1800 & pay my parking ($3.75 - not bad!) upstairs. As I drive past my Filipino friend from the previous weeks, I honk at him & offer a friendly wave. It's his lucky week, he doesn't have to put up with my coin purse this week! :o)

Exhausted from driving, I motor home. It is prayers tonight, but I don't have the energy to go. I am happy to be home, as is Valentina. I see Laura has called! She's back from Mexico! I can't wait to talk to her & see how things went... Did the girls have fun? Did Henk enjoy his time away from his 'other girls' (the cows)? How did treatments go? OMGOSH! The best news I've heard all year - SHE'S IN REMISSION!!!!!!!! AMEN!!!!! AWESOME NEWS!!!!!!! She doesn't have to go back for 1 year! Way to go Girl!!!! I'm thrilled to bits for her! She found out on her 8th Wedding Anniversary. I sure hope I don't have to wait until my 8th anniversary to hear those words!!! :o) 

Talk about a long day... Up & down & all around... Life is a roller coaster! Holy cow! I am about to crash when Mom asks me if I'll drive to Mossleigh tomorrow morning to pick her up. She needs to take Jeff her truck. Crap timing that is! I told her to ask me in the morning after I've had a good night's sleep.

Lekker slaap,

Maria & Valentina

xoxoxoxoxoxoxox

Best buds, enjoying breakfast!

Hangin' out at True Hope!

The True Hope IT boys. I guess there's always 'hope' one day they'll see the light & switch to Macs. :o)

Awh! What a gorgeous family & look at little Ezra's smile! Too cute for words!

Where would I be without my amazing friend? Lost.

Just a few questions for the Doc.

Day 146 - Boxes of Stuff

Okay, so perhaps I haven't made the MOST out of my time to myself in the house, but I have certainly made the most out of uninterrupted phone calls! :o) I used the chi machine more than I have in a long time, did some yoga & faithfully used the treadmill! I'm certainly no fit chick, but there's an inkling of effort there! 


Today I was just getting involved in my research when the phone rang. It was the Cancer Centre. I had asked them to call me & tell me if they ACTUALLY HAD RESULTS so I wouldn't sit there for another 2 hours & then be told nothing & have a lovely parking tab! I certainly wasn't expecting what I heard next.


'Hi Jill, it's (the Nurse) from (the Oncologist's) office. I had a message to call you & let you know the results. It's Nodular Sclerosing Hodgkin's Lymphoma. So pretty much exactly what we were thinking all along. Are you coming for your blood work tomorrow & appointment?'


Well, wasn't that just lovely! Certainly not what I had expected. I mean everyone wishes they would receive the call to tell them they've just won some big sweepstakes & they can chase their dreams. Never did I expect to hear the words 'Cancer' pop out just like that!


So, after I hung up & sat there stunned for awhile, I slowly began to process. Okay. Not such a big deal. I mean, before I answered the phone, whatever was in my neck & co. was the EXACT same thing as it was after I hung up the phone. Now, it's just got a prettier name than FRANK. :o) 


I told about 2 people that day. I really didn't want to let 'Fear' rear it's ugly head in the hearts & minds of the friends & family out there, so I just kept it hush-hush. I also didn't need the drama of 'What are you going to do now?!?' I wanted to enjoy the remainder of my time in the house alone. 


I decided to finally haul some stuff back to the bunk house & get it out of my sight. I also pilfered through some more boxes & it felt good to clean out some stuff. I love my 'stuff', but sometimes, too much 'stuff' calls for a little purging. It was a beautiful day & Valentina enjoyed sniffing around the bunkhouse.


I came back & began cleaning up the house. Mom wasn't sure if she would be back tonight or tomorrow morning, so I thought I better do a little tidying. Good thing! I'd just vacuumed up the wicker basket disaster & she drove in the yard! Yeah, I left if for awhile. It was only Valentina & me, what's the big deal?


So, tomorrow I would meet with the other Oncologist & see what was really going on. Give me strength to handle the words they say & keep my clear thinking mind about me!


Love & healing hugs,
Maria & Valentina
xoxoxoxoxoxoxox

This could be my all time favourite photo!

Like she smoked in a previous life or something!

Friends

Yes?