Day 383 - The Round 9 That Wasn't

This morning we actually had a mini-sleep-in. Usually my appointments are booked for around 0900, which means we need to leave home around 0700 in order to have blood work done & dusted for the appointment with Dr. Daly. Funnily enough, he doesn't come in on Wednesdays until noon. What's the point of sitting around for a few hours on an already trying day? So today we left at 1000. When I went to the treatment room to have my blood drawn, the Nurses looked at me funny. The treatment room was really full & they didn't have me on the list of patients for today. Uh-oh.

Yeah. We waited until 1500 to see Dr. Daly. Only to have him tell me that I wouldn't have treatment today. My blood count was good, but there wan't enough time or space in the treatment room. Well. Thanks for coming out. What a joke.

Dr. Daly had an intern with him. Bikram - from Vancouver. He asked a lot of questions. Jaco urged me to 'give him attitude'. I'm guessing Jaco got 'attitude' from his patients when he was an intern. I didn't give Bikram any attitude, I was pleasant. When Dr. Daly finally came in, he gave me my scan results. Well, part of them, anyhow. I didn't catch anything regarding my neck. I hope that's a good thing. As for my chest & armpit, well, it's good news. My armpit is pretty much normal, but for some stringy strands or something & my chest is .02mm from normal sized nodes. I guess that's good news! I didn't hear too much about my neck, but I think they want to zap it good with radiation. That will take a little investigating.

Dr. Daly told me that I have an appointment on the 9th of December with Dr. Balog, a Radiologist. Dr. Daly said he's my kind of Doctor - a man of few words. Great! So we'll get along smashingly! Fabulous!

I was mildly relieved that I didn't have treatment today. I was feeling horrible anxiety again. Nausea to the hilt. Not pleasant. They originally booked me for treatment on Friday, but after we left the hospital & Jaco & I spoke about it, we decided Monday would work better. Jaco would already be gone, but at least we could have a few more 'normal' days together. Otherwise, I would have to drive myself to & from chemo, as Mom was going to Saskatchewan with Ken for the weekend & I would also have to drive Jaco to the airport the day after chemo & then drive myself home again. Not good!

Mom had dropped us off at Earls to eat, while she ran a few errands, so I called the hospital & told them I would be in on Monday. Jaco & I had a nice meal. We were both a bit frustrated that our entire day had been wasted. We don't have many days left together! Gulp!

We drove home slightly discouraged, but made the most of the evening. Jaco studied & I did a bit of blogging. We talked about our lives - together & apart - and made plans for the last couple of days.

Here's to a wonderful three months together! Our longest time yet! I'm sure going to miss him!!!

xxxxMJV&O

Playin' around in Earls 

Creepy eyes on a slow shutter! 

 Sunshine!

More sunshine

Attempt at a slow motion video - hope it works!

Day 272 - Round 2 of AVD

Crud. I just checked the blog & I’m a week behind. That bites. It’s going to be a struggle to catch up. Bear with me!!!

Today was round 2 of AVD. My doctor’s appointment was at 0900, which meant I had to be there by 0800 for blood work. However, I had seen Dr. Lategan’s appointment schedule when I left last week. There were NO empty spots & names were written up both sides & across the bottom of the page! He’s a busy, busy guy! While we had waited, they called about 12 people in 20 minutes to see him!!! Wowser!!! So, I took the liberty of sleeping a few more ‘snooze buttons’. We left the house at 0730, arriving at 0830 at the hospital.

I went straight to the lab for blood work. Today was only a CBC. The gal at the desk was slow as molasses. They took 2 people in the first 15 minutes I waited. When it was my turn, OH MY STARS!!!!!! YEOW!!! I swear that guy was digging through my entire forearm!!! He put the needle in, which hurt. Then he proceeded to rummage around for a vein like he was digging for a matching sock in the bottom of the drawer. It hurt so intensely that I actually yelped out loud! And I’m generally quite tolerant. He didn’t seem to care that he was inflicting pain upon me. Thanks buddy.

I didn’t have to wait long to see Dr. Lategan. I had Nurse Andrea take my particulars (weight, height, blood pressure & sats). We got to chatting & she helped me out with the receptionist/medical secretary issue. I’ve been given the number for her supervisor & I will definitely get in touch with her!

Dr. Lategan came in & ticked a few patients off the list & then informed me that my Neutrophils were high enough to proceed with treatment. (1.8 & then need to be minimum 1.4) Great! We had a quick chat about Neupogen & when I would take them & I could do them in my thigh – not my belly as I had been worried about! He reassured me that the nasty side effects I’d found out about – ruptured spleen à death, bone pain, etc, etc… would most likely be minimal. Well, the death part anyhow, but not the bone pain. I’ll have bone pain due to the large amounts of neutrophils being produced in the bone, but it is manageable with Tylenol. The enlarged spleen happens with patients who have to take Neupogen every day. Thank goodness I will only be taking shots on Wednesdays & Thursdays the week after chemo.

We were just finishing up the appointment when Dr. Lategan felt my neck & commented, ‘Hmm, yep, they are still there. We’ll have to give you more poison this week.’ I love a Physician with a personality. :o)

I headed down to the Treatment Room & found an empty chair closest to the door. (Translation: closest to the toilet!) I just got settled & the needle put in my arm when the Nurses told me I could go for lunch or disappear for an hour or so if I liked. They would call me when my drugs were ready. Great, except for the fact that Mom had just left to get some food. I called her on her cell 8x & she was NOT answering. Knowing her she had it on vibrate, in her purse. Worst of all, she’d taken my wallet with her, so I couldn’t even find a snack close by! Grrr! Low & behold, she popped her head in the door a few minutes later. She had stopped to pay for her parking, waited in line for the bathroom & just got back to the car when she checked her phone & saw ‘WHAT?!? EIGHT MISSED CALLS?!?’ She said there were another 2 while she was checking the message… Hey, at least I’m persistent! :o)

We jetted over to Booster Juice for a vegetarian panini. I love them, but they put onions in them. I usually have to pick them out. I asked today if they could make one without onions. The lady said it was my lucky day, as she was out of onions, so none of the sandwiches had them! :o) We just sat in the car when the cell phone rang. It was the clinic & they had my meds already! We scooted over to Jugo Juice (I think they have better smoothies) & then quickly back to the hospital.

I was having an impatient morning with Mom. Her driving was driving me crazy & she wasn’t as rushed to get the chemo over with as I was. Perhaps I’m a patient to practice my patience. :oP

I settled back into my chair & Nurse Samantha started my treatments. She is a wonderful & beautiful young lady. I noticed a photo of her & a Chocolate Lab on the back of her ID card. We chatted about all sorts of things. She is very pleasant & very attentive. She checked my blood flow many times throughout the treatments, she reviewed the side effects & also the dosages I was receiving. I had a bit more of the Dacarbazine this time than previously. I don’t mind. The side effects of Dacarbazine include alopecia, nausea, vomiting, flu-like symptoms. Pretty mild compared to cardiac myopathy & peripheral neuropathy! I showed her our wedding photos, as I had them on the laptop.

I visited with a Welsh lady beside me. She had Leukemia & now has to have Gamma treatments once a month. A little bottle of this stuff costs $6000! Crazy! It has a certain cell (neutrophils maybe?) collected from 20,000 different people! But it keeps her neutrophils working & thus, keeps away infections.

They gave me another Ativan & it chilled me out nicely. In fact, I’m typing this in real time & I feel like I can barely keep my eyes open & can barely think straight! I’m sure I’ll be out cold on the way home!

I’ve been very happy thus far at the Peter Lougheed hospital. I must say, the Nurses & Doctors are fantastic & they are taking great care of me. I’m very grateful for the chance to be treated here. The crappy part? I’m on the downward slope of baldness. I have really enjoyed the buzz cut. I’m sad to have to say goodbye to it. I am even more sad to have to say goodbye to my eyebrows & lashes! Small things, I know, but it would be nice to keep them – even if it was only 5 or 10 hairs… Wishful thinking. I’ll just have to practice my make-up artistry in the meantime…

So, there you have it. Round 2 done & dusted. Survived another escapade & as Dr. Daly said, it’s nowhere near as bad as I had expected. Thank goodness!!!

We finished up at the hospital, a quick stop at HomeSense & Winners for Mom to find a frame & then it was home to bed. I was sound asleep by 1800! G'nite all!

A sleepy Maria & lonely Valentina (she didn’t get to come today)

xxxxx

Dr. Lategan - he's really tall & my angle (sitting) doesn't make him look any shorter! What a great Doctor though! Patience of a Saint or is it Patient's of a Saint?!? :oP

My Dancing Partner - I get the multi line machine as I need saline & chemo at the same time.

The treatment room. Everyone's chillin' out.

OMGosh - The Gorgeous Nurse who took care of me today - meet Sam! What a stunner!!!

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!