Back from Disneyland

We had a GREAT time in Disneyland. Lots and lots of walking and sore feet but it was worth it! It was a great time of year to go; the weather was great and there were hardly any lineups. We also went to Mickey's Halloween Party at Disneyland on Tuesday night. That was tons of fun. We dressed up as Harry Potter characters and the kids had a blast. I posted some pictures at the bottom of the blog. Thank you to everyone at the Surrey Courthouse for the Disneyland trip!

Back to reality...
The week before Disneyland I had my second ER visit. I had bad pain in my side and was having difficulty breathing; felt like my ribs were crushing my lungs so I couldn't take a full breath. It ended up being a kidney infection - probably made worse from chemo a few days before and not drinking enough water. For some reason water is disgusting after chemo - weird. Anyway, had a REALLY good ER doctor and I was able to go back each day for IV antibiotics to make sure I would be ok for Disneyland. My breathing was still a little restricted but it was ok for most of our travelling and walking. During all this my back has been getting a little worse - feels like it's nerves around my spine. I know that I do have cancer on my spine so I figured it was that getting worse. Since going off the Iniparib (parp) combo of chemo, my skin mets have gotten WAY worse, in a different area than before, but really bad - uncomfortable, itchy and burning - horrible. So basically, I"m assuming all the cancer is getting worse and know that I really need to get back on chemo. I had chemo schedule for the Wed after DL so I wasn't too concerned. However, on Tuesday, in the middle of the day, out of nowhere, my back started REALLY hurting - felt like nerves causing the pain and nothing would make it better. I went to the ER at Lions Gate (in case I had to stay overnight - I wanted to make sure I could still get my chemo) The Dr there was really good as well. Although, one of the first things he said was - "I was looking over your files and see you had a PET scan recently but I can't seem to find the written report?" ARGGGHHH!! SO frustrated about that. I STILL don't have that report and it's been almost a month! The BCCA is so worried about who they let have the scan because of the cost and high demand and then they don't even bother to do the report - which basically makes it a complete waste of time and money - they've paid for the scan but there are NO results, so what's the point?! ANYWAY, enough about that. They gave me stronger pain meds that helped with my back and it's actually been ok since and I haven't needed to use them. They did a CT and chest xray which showed some fluid in my lungs (which I'm not really sure what that means - is it cancer? Not sure? I was too drugged at the time to ask) that is probably causing the breathing difficulties. The er dr said that it's not too bad and I can wait to see if the chemo clears it up; if not then I will need to have it drained.
Yesterday, when I went to have chemo, Dr. Smiljanic said that he will put me back on the Gemcitibine, Cisplatin and Avastin which worked so well for me back in Dec/Jan. However, he said if it doesn't start working right away we will have to change to something else - possibly Abraxane and then my hair will fall out again :(
I hate to bitch and complain about things on here so please know that for every "one" thing I complain or vent about there are AT LEAST 20 other things that I could be complaining about; things that most people would be appalled to hear about our medical system and the things you and your family have to go through. Most of the things are just common errors legitimately caused by lack of funding, under-staffing and overworked doctors which we hear about all the time on the news. But when you are in the middle of it, you realize just how bad it is. There are SO many things, I feel like if I were to complain about them, or even mention every single thing, I would sound crazy. I'm not even going to get into the ridiculous details about the PET report but just know that for me to even mention on here, it's BAD! Most of the stuff, I just feel like there's no point in getting upset about so I don't. I originally started this blog to get out information efficiently. Back in December there was so much going on and new information on a daily basis so this was the best way to get it out- even for close family and close friends. I've had many people tell me that they are still following my blog and I can see from the blog "stats" that there are people reading it all over the world?! I suppose that is friends of friends? Most of the time these days I feel like having to update my blog is kinda a pain in the ass but mostly just because I don't really feel like I have anything interesting to write. I could probably write a pretty comical book about all the crazy cluster, gong-show screw-ups I'm enduring on a regular basis but that seems a little counter-productive?! lol
Anyway, thank you to all of you who still bother to check for updates :O) xoxoxo

Guest Article by Trevor Bradshaw

Remembering the Sacrifices of Breast Cancer Patients

We’re nearly two weeks into October, which is of course National Breast Cancer Month, and although I’ve seen plenty of pink (on everything from football players cleats to sunglasses) there’s hardly been any real dialogue about the serious health implications of breast cancer or information about the importance of breast exams and screening.  With the lack of any real discussion surrounding breast cancer this October it’s probably pretty safe to say that National Breast Cancer Month has become a referendum of pink ribbons, sentimental fund-raising, and saucy t-shirts, when it ought to be a remembrance of the struggle that an estimated 1 in 8 women will encounter throughout their lives.   

By trivializing National Breast Cancer Month, we run the risk not only of trivializing one of the deadliest, most dangerous forms of cancer- we run the risk of alienating the women who have survived it.  Our focus instead should be on honoring and remembering those women who have been diagnosed, and ensuring that they receive the best care and quality of life possible. 

In particular, there have been thousands of brave women who have volunteered for experimental clinical trials despite significant risks to further our understanding of cancer.  Clinical trials, which are studies of new treatments and medicines conducted on actual breast cancer patients before being released to the general public, are an indispensable resource to future medical gains because they allow doctors to assess the benefits and effects of different treatments in a real-world setting. As such, when breast cancer patients volunteer for clinical trials they are further assisting in medical research and helping the thousands of women who have yet to be diagnosed. Of course, clinical trials often have a multitude of risks, including the chance of serious or unpleasant side-effects.  Everyone has heard the talking points at the end of pharmaceutical commercials listing the side-effects, and it’s in clinical trials that those side effects are diagnosed.  Even worse, the treatment or medicine administered in the clinical trial may ultimately prove to be ineffective.  

Of course, breast cancer patients aren’t the only ones who volunteer for clinical trials- there are currently Hodgkin Lymphoma clinical trials, mesothelioma clinical trials, and many others- but for National Breast Cancer Month we ought to remember the sacrifices and struggles that millions of women have made rather than focusing on “feel-good fund-raising activities.”

Just a quick update... no PET scan results yet - LONG story. I have a report but it's the wrong report because it was compared to the wrong scan. Anyway, the results aren't  looking great but I don't know when I'll get the specifics - another long, frustrating story. Regardless,  Dr. Smiljanic wants to take me off the Parps because I'm having too many delays for it to work properly :( I agreed and we started on the old chemo from back in December that seemed to work so well. I started my Day 1 today, will skip my Day 8 because it would be right before Disneyland and hopefully I can get a transfusion on that day so that I will have some more energy. When we get back I will start Day 1 right away on Wed and have Day 8 on Wed as well, and then go back to Fridays. (We still haven't told the kids about DL)

I'm considering making this website a members only which would mean if you want to read you would have to sign up and then sign in or something like that - it's not that big of a deal I don't think... I just don't like the idea of this popping up when our last name is googled because Treydon is becoming a very good reader and could understand a lot of what I'm writing and also, I wouldn't want his friends having access to this information. I am assuming that any parents who are reading my blog would be very careful not to share the information with their children or talk about it when their kids are around as we are very careful with the information we share with our kids. I would be very upset if Treydon had to hear stuff about me from his friends who may have overheard their parents etc...

Oh and also, Treydon seems to be doing much better on his antibiotics and is running around being his usual self! (after missing 7 days of school!)