Friday, May 18, 2007

Friday, May 18th, 2007 Damn Pacific Blue Cross

Dear Bloggy,

Well, no pictures today. I didn't take my camera with me today, so no spontaneous pics. I am even more pissed off at Pacific Blue Cross (the Extended Health Benefits insurance company). What a joke they are... and I guess that means the average jane/joe who thinks by having this extended health coverage is a good thing, they have no idea until they need it that this is just another insurance company who is out to screw the insured and continue making profit for the company.

Yesterday, Dr. Gill had written the letter to Blue Cross to explain why I needed this med (gee... it's a chemo drug. It's needed to fight cancer. I am fighting cancer. I would not need this med if I was say, fighting a cold, or had a bleeding hangnail. Duh!!). Vicki, her secretary, faxed it to Blue Cross yesterday afternoon. Today, we wanted to know what the status because we need to start taking the med. Vicki called Blue Cross, was put on hold for 15 minutes, then the girl who obviously doesn't know her head from where the sun doesn't shine, said she doesn't know if the fax was received or not. HELLO??? Perhaps you could get off your butt and check??? No, apparently this is not her job. Ok, can you tell Vicki if the fax number she was given by Blue Cross is the right fax number. Yes... it is. The fax is right there close to her desk (yet she can't tell Vicki if the fax was received and she can't find out???). I have no idea why government workers get painted with the incompetent brush... when it looks like private industry takes the lead here.

So, it's Friday.. of the long weekend... and no, I have not started the oral chemo which I was to start yesterday. Dr. Gill told me she doesn't want me to stress out... that we will deal with this next week. But it's kind of hard not to stress out when idiots that work for an insurance company can, through their own incompetency, delay an actual patient's treatment plan. These people don't even work in the medical field, yet they can screw things up.

The alternative, which may be what we have to do next week is to get hooked up to the portable pump for 35 days. This because of an idiot who can't tell if a fax came in or not. It will mean I have less mobility, less flexibility, the concern that my portacath entry will become infected (which will mean more drugs and a possible hospital stay), I will not be able to bathe or shower for 35 days and have limited clothing options to dress around the pump. I can guarantee if we do go this way, then they are also going to have to treat me for depression... there is no way I can live with that pump 24/7 and not get depressed. When I have to wear it for 3 days, I am climbing the walls on the third day and if anyone looks at me the wrong way I'll blow. That is one of the things that they are concerned with with that particular chemo (5FU)... mood swings and depression. I get close to it after the three days on the pump.... so now I may have it for 35 days??? Because an idiot insurance company's staff who has no medical background makes a decision that can affect my well-being?

I'm sure those reading this can already see the change in my mood/attitude from previous entries... and this is with just the thought I may have to go this route. You can only imagine what it will do to my well-being if I'm actually hooked up to it. In that case, I'm giving fair warning now that more then likely I will be cancelling any plans I've made with people because my mood will not be dependable and if I can't dress or feel like myself, I won't be someone you want to be around.

Soooo, I'm going to try and not stress out about it over the weekend since there's nothing that can be done this weekend... and it is a long weekend (Victoria Day Weekend), so nothing can be done until Tuesday. I'll leave it in Dr. Gill's hands since she knows what she is doing. I'm not much help... I just get pissed off! :)

Ciao for now!


Thursday, May 17, 2007

Thursday, May 17th, 2007 - I could scream!!

Dear Bloggy,

Mark this day in your calendar... it has been the most frustrating day, to the point of making me teary and feeling down :/ All because of beaurocracy!! Have I mentioned anywhere in these entries how much I hate red tape, insurance companies and lack of compassion?? Well, today I hit all three!

Dr. Sharlene Gill and moi.

I had an appointment with Dr. Sharlene Gill, who I think the world of! There is something about her that just oozes compassion, yet is right on top of treatments and what is the best route to take... at the same time, coming across as a very human human being (if any of that makes sense). Needless to say, even though I haven't met the kajillion other oncologists associated with the BC Cancer Agency, and even though everyone who has had an oncologist fromt this agency has said their's is the best (gring)... I think Dr. Gill is the best :)

Anywho... she had applied for payment approval from the Cancer Agency (well, actually, it is the Government Agency who covers the payments for needed cancer drug treatments) for the oral (pill) form of a lighter dose of the 5FU chemo that I should be taking while going through the radiation treatments. Now that my stomach has settled down and does not seem to be affected by the radiation, it's time to start the oral chemo. But payment was not approved!! The reason being that the government agency says that I could have the lighter dose of 5FU given intravenously and I would have to wear the portable pump for 24/7 for 4 weeks!!! HELLO??? Do they have any idea how uncomfortable that would be, not to mention inconvenient and would limit my mobility and flexibility?? I am climbing the walls by Day 3 when I have to have it on during a regular 46 hour session and am watching out the window for Nurse Donna to come unhook me... so I can't imagine 30 days of wearing it 24/7.

But, we have a dilemma since the cost won't be covered by the Agency... and this is one very expensive drug! So, the next step would be that my Extended Health (Blue Cross) would cover 80% of the cost and I'd have to pay 20% (approx. $300)... keeping in mind I am now on a reduced income because I'm on Long Term Disability. I figure that the $300 would be worth it... rather than going crazy with the pump.

So, off I went to London Drugs to get the prescription filled (this is after the appt. with Dr. Gill, then a radiation session, then an appt. with Dr. Ma the radiation oncologist). I get to the pharmacy and lo and behold, it comes up on the computer that Blue Cross will not cover this drug. HELLO??? So the pharmacist calls Blue Cross to see if there's a glitch in the computer, but they come back with ... that drug is on the list that the Government Agency should pay, so we don't pay it. Well, come on people now... how can both say they won't pay?? So Blue Cross says that they will need a letter from the oncologist, explaining why I need this drug and why the government agency won't pay for it and THEN they will review and determine if they will pay for it or not. What a bunch of red tape! Meanwhile, I don't have the drug to start taking tonight!

So, I go home, call Dr. Gill's office and leave a message on the voice mail for Vicki, Dr. Gill's secretary. She rang me back a short while ago and said that Dr. Gill will write to Blue Cross and meanwhile, Vicki will get back to me as to what we will do in the meantime. I'm not about to fork over $1200 for the meds, only to find out Blue Cross still refuses to pay and then I'm -$1200! Yikes!!

Well, fast forward to 3:30pm.... Vicki just called to get my Extended Health info and she is faxing the letter to Blue Cross as we speak. Let's hope Blue Cross is as quick in responding with approval.

Meanwhile... Nurse Donna, from Home Care Nursing called. Remember, Nurse Donna is the one who comes to the apartment to unhook me from the portable pump when I'm getting the 46 hour chemo. Since we are not doing that during the radiation, I didn't think I'd actually be seeing Donna until sometime in June when we start the IV chemo again. But, bless her, she was calling just to see how I'm doing with the radiation and if I need anything in the way of home care help. She also reminded me, that if I am not using my portacath for IV meds/hydration, then the port has to be flushed with saline solution every 4-5 weeks, so she has put me in her book for May 30th and she will drop by to do a quick flush of the port. I knew this had to be done, but due to chemo brain, had completely forgotten! So thank goodness I have this team of gals who are on top of everything for me :)

Other than that... not too much new happening. Yesterday (Wednesday), was our "Energy Awareness" day here in BC. There was a campaign for everyone, business or residence, to turn off any unneccessary lights or appliances to save energy (really, just to be aware how much we leave turned on that we don't need). So Mimi and I were on top of this yesterday. We had all lights and extra appliances turned off. In the late afternoon, we went out to the roofdeck to hang out... and played a board game.

Here's a picture taken up on our roofdeck... the place where we hangout in the summer when our apartments are too warm (grin). Mimi, Nathan, Scott, Tomas and myself can regularly be found up here on a summer evening, playing board games. So Mimi and I did that yesterday for the first time this season.

This is the view from the table we were set up with the dominoes game - Domination! It was a lovely evening, although, as the sun went down a breeze off the water came up and then it started to get downright chilly!

I think it was about 8:45pm here and the sun was going down and the breeze was coming up. So we decided to pack it in and go to our own apartments. Later on... around 10pm, the breeze had gone away and it was downright warm again. We could have gone back outside... but we didn't (grin).

Well, this weekend is the long weekend coming up. I have a radiation session tomorrow and that will complete the first of five weeks of radiation. So far, the only affects are being tired. Even when I don't think I am tired, I lie down and am in a deep sleep for 3 hours, so I guess I am tired (grin). Unfortunately, the weather forecast for the weekend is RAIN.. clearing up late Monday (grin). Isn't that always the way for those who look forward to those long weekends? Then the weather doesn't co-operate!

We shall see. I'm going to take Bridget out for her afternoon walkie ... the sun is out and it doesn't look breezy at all!



Tuesday, May 15, 2007

Tuesday, May 15th, 2007 - Me and Rosie the Radiator

Hey Bloggy!

Day 2 of Radiation Therapy and I've decided the radiation machine and I are going to become intimate friends.. so I had to name her! From now on, she will be known as Rosie the Radiator! Albert, one of my radiation technicians took this picture of me with Rosie. Rosie is being shy here and you don't see her in full action.

Behind me is the narrow plank-like bed that I lie on. There is a small pillow for my head, a wedge of foam that goes under my knees and then a little contraption that has a place of each foot. What this does is supposedly lines the body up in the proper posture on the bed.

Then the fun begins. Today there were 3 technicians who have their clipboards and remotes while they prod, move me a fraction of an inch here, then a fraction of an inch there, then raise the bed with the remote, move it to the left, move it to the right. This goes on for eons while they get me lined up just so. Oh, and let's not forget the "freckle" tattoos the Surrey technicians had done when I got my scan done by them a week ago. Oh, but it doesn't stop there...

I had to go to the "Simulator" today and be fussed over by 5 radiation technicians while they poked, prodded, moved, raised, lowered and marked my skin. Yes... I have a virtual road map drawn on my stomach, hips and upper legs. Once I was marked up, (apparently the Surrey technicians mark up differently than the Vancouver technicians), they then applied silver nitrate so that the markings won't wash off. Eventually they will wear off, so I may have to have the silver nitrate reapplied in a couple of weeks.

I had to be at the Agency at 9am this morning for the Simulator appt. That was interesting because that appt. lasted for 1 1/2 hours... just in time for me to walk down the hall in the lovely fashion statement you see in the picture, to my 10:35 radiation appt. Now, the idea is, if they have all the markings right and they can line me up really quickly, then the actual zapping will only take 10-15 minutes. For each session, I get 3 zaps. One from above, one from the left side and one from underneath.

The way Rosie the Radiator works is very kewl. I'm lying on the bed, which is raised to about 5 feet off the ground. Now, that big round radiator that you see behind my head in the picture, is on that big thick arm. The technicians can now be out of the room and watching on monitors... and using a remote and the computers, can line up Rosie in the three different angles... then turn on the zapper :)

Tomorrow, I have a 10:45am Rosie appt. Depending on how the xrays turned out today, will determine whether we have to do more xrays tomorrow or whether I just have to be lined up and zapped :)

It's only Day 2 of radiation so no, I haven't felt any side affects yet. The technicians say that IF I am going to have any reaction to the radiation, it probably won't be until after Week 2. Again, everyone is different and depending on what they are radiating can have different side affects. I am getting a section of my abdominal wall cooked (grin)... and they say that for the area that is getting done (10 X 12 cm), I will be getting a lot of radiation. So, we will just have to see how my system, after the 4 aggressive chemos, handles this part of the journey.

Meanwhile, on Thurs, I meet with Dr. Gill, my chemo and primary oncologist at 9am to go over and get set up with the oral chemo; then at 10:50am I get zapped; then after the zapping, I meet with Dr. Ma, my radiation oncologist.

Tonight... calls for a grilled cheese sandwich and soup (grin), sometime before American Idol and the results for Dancing With the Stars! I didn't make it to the West End Community Centre this afternoon because I didn't realize I was going to be at the Cancer Agency for 4 hours today ;) So if tomorrow isn't that long, Bridget and I will wander down to the Community Centre to check out what kinds of classes they are offering in the Spring and also, to pay for my Resident Parking Permit for street parking in the 'hood :)

That's it for now! Ciao!


Monday, May 14, 2007

Monday, May 14th, 2007 - First Radiation Session

Hellooooo Bloggy!

Well, today starts the next phase of the journey... Radiation Therapy! And an interesting part of the journey this should be. The first visit today was very interesting, but then medical machines and contraptions have always interested me. It blows me away that someone, somewhere from an idea ended up developing, over time, these marvels that have done so much for modern medicine.

The way the Radiation Therapy department is set up is they are divided into "Units". A Unit has it's own set of staff, technicians and machines. A patient is assigned to a Unit, so every day of therapy you go to your same unit, hence have the same staff looking after you. I have been assigned to Unit 4 and my radiation team is Hayley, Alex and Rob. All three of them are wonderful... is there anyone at the Cancer Agency who isn't wonderful?? They are friendly, warm, caring and go out of their way to explain what they are doing and why.

So, Alex took me on a little tour of Unit 4 and explained my treatment plan -- 25 sessions of radiation, Mon-Fri for 5 weeks. I will be getting zapped at 3 different angles, although the focus is on one 10 X 12 cm area of the abdominal wall. I get zapped from above, from the left side and from below. The radiation maching is like this big round xray machine that is on a big arm. With that arm, the machine can revolve around me, hence able to get the 3 different angles. The room is pretty high tech with the radiation table in the middle of the room, the radiation machine above the table, then there are 3 or 4 monitors around the room. This is for them to do the settings and set you up for the machine. Once you are set up, you just stay in place and the machine is manipulated from outside the room... where they can see the whole room by monitor and manipulate the machine into the various angles. It really is like being in a sci-fi movie (grin).

In the next couple of days, I'll get some pictures. Hayley said that won't be a problem so I will put them up on Bloggy once I have them :)

After I got my 3 zaps, they had to take some xrays. Again, this is for making sure they have the settings just right. They were going to take the xrays with the radiation machine since I was already in place.

I just got a phone call a few minutes ago. They would like me to come in earlier tomorrow (9am) because the xrays were not clear enough. The reason being, they used the high resolution imaging from the radiation machine but because it's high resolution, the actual xray images are not that clear. So tomorrow I have to get images done with the simulator, which is like a CT Scanner but somewhat different. This should be interesting because I could SWEAR that's what they were going to use last week and couldn't, hence sent me to Surrey to the scanner that they have. I did get my pre-radiation planning scan done in Surrey... now they need to do another one? I'm keeping my fingers crossed that tomorrow morning they don't realize that they need the Surrey simulator, hence make me go out there again.

Anywho... it's too early in the process to have any side affects, if in fact, I have any. Once again, everyone is different. The technician said that I won't notice anything for at least 2 weeks, then if I am going to have any side affects, it will be after 2 weeks, as the radiation accumlates.

I haven't started the oral chemo yet. Originally, I would have started it today, same day we start the radiation. But since I was sooooo sick last week, Dr. Gill made the decision to give me a week's break before starting me on the chemo. This way, I get a couple of days of radiation to see if that upsets my system before introducing my system to oral chemo. If all goes well for Mon-Wed, then I will be starting the oral chemo on Thurs or Friday of this week... which replaces the aggressive IV Chemo. The oral chemo will be much more mild (famous last words) but will work well with the radiation and still keep chemo in my system so that we aren't starting afresh when we go back to the aggressive chemo later in June.

So, I'm feeling good right now. I probably could have had a nap this afternoon, but I got involved with putting together the June 1st Metro Theatre Online Newsletter and the more I can do now means I won't be in a rush at the last minute :)

Now... I guess I should figure out what I'm going to make for dinner tonight :)

Ta ta for now!


Addendum: An article my friend Jay sent is excellent in describing, to a "T" what I mean when I refer to myself as having 'Chemo Brain'. Click on the
Chemo Brain article
to get an idea of what my brain is going through (skip over the car commercial by clicking on "Enter The only difference is my aggressive chemo treatments is for colon cancer, not breast cancer.