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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!
1 comments:
Jill - what a long day, you were probably happy to get to bed. I've had a quick read through the link you sent regarding the ABVD study. Here is my opinion (since you asked...):
- The study is only on 40 people (well, 40 out of the 363 total had the Bleomycin discontinued). Of that 40, they were discountinued at different points through treatment (5 in the first two cycles, 9 in the third cycle, 12 in the fourth cycle, 11 in the 5th cycle, and 3 following the fifth cycle) So, their findings are based on people who have had SOME bleomycin for varying lengths of time. None of the people in the study did the treatment without the Bleomycin (which I think is what you would prefer?). So, to me it more so shows that maybe the Bleomycin could be reduced in the treatments, but not necessarily elimintated. To see if it could be eliminated, you would need to do a study without any Bleomycin, and compare that to other options. However, with every person being so different, various medicines/chemicals effect everyone differently. So, for example, just because 5 people discontinued the Bleomycin during the first 2 cycles, even if you did the same thing, it doesn't mean you would have the same results (as you know). However, the 1% difference is very encouraging and hopefully they do some more studies on the use of Bleomycin. Janis
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