Monday, March 31st, 2008 - another update

Hiya Bloggy,

It's getting a little late but I thought I would try to do an update tonight rather than wait until tomorrow. Call it superstition, but something about posting a blog update on April Fool's Day just doesn't seem right.

Sometimes I wish this was all one big joke or prank, but it's not... and it's not too often you will hear me getting all quiet and serious. But, I have had a kind of rough weekend. I'm trying to think what the timing has been but I guess it started with the other week when Jo and I went to my appt. with Dr. Gill. I was really surprised that they had found two areas on the PET scan that were of concern, but I don't think it really sunk in for me at that point. Then I had the appt. with Dr. Yee, the lung surgeon, which is the last entry in the blog dated Wed March 26th. Again, the things he had to say must not have really sunk in.

It's interesting to say the least. I mean, I consider myself to be a reasonably intelligent female and things that I don't understand, I will ask questions. But to have the information from two different appts. not really sink in has kind of thrown me. It took a few days for me to process the information and then the anxiety started to creep in. By Friday, I was having anxiety/panic attacks and let me tell you, they are very, very scary.

Once I processed the information I realized that this is serious stuff we are talking about. It's not just a 'ok, we have found a few more things, but nothing that a little minor surgery won't fix' and I guess that was how I was looking at it. In fact, the spot on the lung is more than likely a secondary cancer. It's possible it is a primary cancer, but either way, to get rid of it will require lung surgery and that is not considered a minor surgery, even though the spot itself is considered a small spot (just under 1/2 inch).

But what really freaked me out is the concern over the adrenal gland mass. The concern there is that on the PET scan the two spots that lit up were the adrenal mass and the spot on the lung. That means the radioactive tracer that they inject prior to the scan goes through the body and lights up if it finds active cells (which usually indicate cancer)... so this adrenal area now becomes a concern. The problem with this is... IF it is malignant, then it is considered having spread from either the colon cancer or the lung cancer. Either way, this is NOT a good thing and if that is the case, then they more than likely would not do any surgery, for the adrenal gland or the lung spot, because it would be considered spreading and doing surgery would be no better than attempting more chemo. The chemo then would be done to try and slow the progress, but would not be a cure. So you can understand why I started getting very anxious and panicky. I'm not ready for us to be talking comfort care and/or palliative care.

Well, to make a long story still relatively long... I have spoken to my GP (who has prescribed Ativan to help take the edge off the anxiety/panic when it shows up) and his advice is to try not to be scared until we know if there's something to be afraid of. There are factors in my favor that the growth is benign... the fact that I've had it for so long (pre 2001), that it is extremely rare for colon cancer to spread to the adrenal glands and the first of the blood tests showed that my cortisol levels were within normal range so the growth is not producing excess cortisol (we just had more tests done for other hormone and steroid production) and are awaiting those results.

Today, Dr. Gill (oncologist) called me because I had sent her an email on Sunday to let her know that I was having anxiety/panic episodes... so she wanted to know how I was doing today. When I told her it comes and goes and that I am scared, she, too, reiterated not to let my nerves get to me right now. She then explained what the tests are we are doing and why we are doing them. The blood/urinalysis tests are to determine if it is safe to do a fine needle biopsy of the adrenal mass. If the growth was producing excess hormones, etc., then that would have to be gotten under control before doing the biopsy. If these next tests prove to be normal, then we will go ahead with the needle biopsy. It will be THAT biopsy that will tell us if the mass/growth is benign or malignant.

If it is benign, then FANTASTIC!!! It would mean all we have to do is get rid of the lung cancer by surgically removing the spot. Imagine that... being happy that all we have is lung cancer??? Sheesh!!

But that's where I'm at at the moment. Oh... and for all of you who sent emails after the last update... I just want everyone to know I love and appreciate the emails. Likewise, I do appreciate the phone calls, but please don't take it personally if I am not answering the phone. There are days when I just am too tired to talk about it and I don't want to trigger off an anxiety/panic attack. Email, I do usually get around to answering... unless you all write at once... then it does take me a few days to get back to everyone :)

But thank you, thank you, thank you everyone for keeping me in your thoughts... and now, I need everyone to think positive thoughts that the adrenal growth is benign!! We went through pooling our positive thoughts together last year when I was in the hospital and I came through with flying colours, so I'm asking if everyone can work that magic again :)

Oooh... and everyone from work... pass the word... THANK YOU for the cards!! I checked my snail mailbox this morning for the first time in a week and voila... there were your cards!!

Your fighting buddy,

Cheryl

Wednesday, March 26, 2008 - Not the best of news, not the worst either.

For starters, I'm going to go with the thought that all is going to turn out just fine ... we just have to tackle a few more hurdles/challenges to get to that smooth road. As I had made note in the last update, the PET scan found the growth on the right adrenal gland (which is not new, we have known it was there at least since 2001) and a small spot (just under a 1/2") on my lung. At first, my oncologist (Dr. Gill) was VERY concerned about the adrenal growth, but when I reminded her that it has been there since 2001 and had been considered benign since it hadn't grown from 2001 - end of 2006, she had a pow wow with her assistant oncologists while Jo and I waited in the examining room. They went over the reports from my surgeon (Dr. Brown) at the time of my surgery and sure enough, he had made mention of this growth and that it was thought to be benign. It would be extremely rare for colon cancer to spread to the adrenal glands... colon cancer, if it's going to spread, goes to the liver and/or lungs. So Dr. Gill relaxed her concern and said that we would still go through the tests to see if we can prove it's benign or not.... and at the same time as going through those tests, etc., she would also refer me to a Lung Surgeon, Dr. Yee to decide what our plan of action will be for the spot on the lung.

Ok... so last week I went through a kajillion blood and urinalysis tests, etc. These tests are to check for hormone (cortisol) levels, etc. in preparation for going to see an Endocronoligst. This week, being a short week because of the long weekend, was a busy one for me. On Tuesday, I had to be at VGH at 8am for a minor surgery to have my portacath taken out. OUCH!! Although the froze the area (just under the collarbone), there were definitely some moments of "Oh Oh!". The surgeon was very nice and he said that if I felt anything to make sure I let him know and he would give me more freezing. Hahahaha... can you visualize this?? You are on an operating table, with the lights above and he tells you to look to the left while he's working on the right. Meanwhile, you are getting cut open and the whole time you are wide awake!! I had to tell him a few times that I felt what he was doing and he would give more freezing. I'm not exactly sure how the portacath is set... I know it gets attached to a muscle and the thin tube goes into a major vein... how they do that, I have no idea. Somehow, when taking it out they have to cut you open, unattach you from the muscle and take the tube out of the vein. There are some internal stitches that will dissolve and some external stitches that I will go to my GP (Dr. Sean Fay) next week to have him take them out.

That was yesterday morning. Doug Keller (a childhood friend who lived on the same street as we did while growing up and now lives across the street from me) took me to the hospital at 7:30am. After the little surgery, we went to the cafeteria for a coffee and something to eat. We had a couple of hours to kill before we headed to the Imaging department to have a CAT scan. Well, it seems, two CAT scans. They did a chest scan (this is for the Lung Doctor) that was ordered the day before by the Lung Doctor's office, as well as another, what I thought was an abdominal scan... but in fact, was from below so it was a kidney/adrenal scan. I wasn't sure what that was for... I found out today.

Today I had the appt with Dr. John Yee, the Thoracic/Lung surgeon. I really like him! He is not a stuffy, holier-than-thou surgeon... he was very nice, friendly, and spoke in layman's terms so I actually understood what he was saying. He says that my case is actually very complicated and not straight forward. He also said that he has worked with Dr. Sharlene Gill for some years now and she is the best of the best... which does not surprise me because I think you've all heard me say how much I adore my oncologist. (Turns out, Dr. Yee is the best of the best when it comes to Thoracic Surgeons according to a staff person I was talking to on another floor). But, I digress. We had a good appt. and he spelled it out. The reason my case is complicated is because of this adrenal growth. He was very concerned that IF it is cancerous, then it really complicates things and this becomes very serious. I told him that Dr. Gill was very concerned too and she actually said the same thing that my case is very complicated but when she realized that I have had this grown for some years now... but my CEA levels have only been elevated since December, she was no longer concerned (or as concerned) about the adrenal growth. I explained that the growth was on the CAT scans I had done at St. Paul's hospital back in 2001.

And therein lies one of the glitches with our health care system. Apparently, it's only been in the last couple of years that VGH and St. Paul's medical personnel can actually access each other's computer systems and share information on mutual patients. But they did not have this agreement back that far (2001) so he couldn't actually access the scans. He can order copies from St. Paul's but he doesn't have them at his fingertips (nor did Dr. Gill when she was first concerned). So having heard this, he will get copies.

He said that it is VERY RARE that Colon Cancer would spread to the Adrenal glands. It's not impossible... cancer cells can end up anywhere, but it's very rare. Might my adrenal growth be cancerous? It could be depending on this Lung spot. He is pretty sure the colon cancer would not have spread to the adrenal... and it makes sense that the colon cancer spread to the lung and that's why the spot on the lung. BUT, another scenerio is, even though I quit smoking 6-7 years ago, I did smoke for about 30 years. So this spot on the lung could be a primary cancer and have nothing to do with the colon cancer. If it IS a primary cancer, then it is possible that it has spread from the lung to the adrenal.

Soooo... what happens now?

1) I will be given an MRI scan or a special adrenal CAT scan specifically focused on the adrenal gland/growth. Apparently (I'm not sure if I heard this correctly) but the MRI/Special CAT could tell if the adrenal growth is malignant or not.

2) If they can't tell from that scan then I may have to have a "needle biopsy", where they go in by needle and biopsy the growth. He's trying to avoid that if at all possible because that can be an uncomfortable procedure and where he can, he wants to avoid any kind of discomfort or pain.

3) If the adrenal growth is benign (no cancer), then we just deal with the spot on the lung and that will require surgery.

4) If the adrenal growth IS cancerous... then it is not a good thing. They will probably not do any surgery but try to fight it with more chemo and possible radiation. I don't even want to go there, because this becomes nasty with it officially having spread and being considered "incurable". Yes, I know.. one is wondering... well why not cut out the lung spot AND take out the adrenal gland? Both are serious surgeries and if it is cancerous then they can pretty much guarantee it will pop up elsewhere and the body couldn't take surgery every time it pops up somewhere else... hence they would try to control it with chemo and/or radiation.

Are you confused yet?? Ok... here's a summary of 3 possible scenerios... and we all must focus on the first two would be the best!

Scenerio 1 (The best):

The adrenal gland growth is benign and not malignant. Therefore, we can just leave it and focus on the spot on the lung. Dr. Yee would arrange for surgery and have that one spot cut out. We would be in the hospital (VGH) for 5 days or so and then 4-6 weeks at home for recovery. After that, I would be continued to be monitored like a hawk, but technically, I would be cancer-free.

Scenerio 2 (Second best):

The adrenal gland growth is benign and not malignant. It is recommended that both the spot on the lung AND the right adrenal gland with the growth are removed. Because they are two very different parts of the body, this would require two different surgeries. Chances are, they would do the lung surgery first, make sure I'm totally recovered from that surgery, then follow up with the adrenal surgery.

Scenerio 3 (Worst):

The adrenal gland growth is cancerous. They would probably make the decision not to do any surgery. They would treat it the whole system with chemo and possibly radiation on the adrenal growth... but there is no guarantee that it would get rid of one or both, or what may show up later. It's possible the chemo would do the trick, but it's not the best scenerio.

I'm not panicking at all at this point. I figure that the first scenerio is the one that is going to happen. Since it would be so rare for the adrenal gland to be affected, I don't see why it would be with me. Benign growths on the adrenal gland are sooooo common, just as "fibroids" (benign growths in the uterus) are soooooo common in all females. It's possible that a fibroid could be cancerous, just as it's "possible" that a growth on the adrenal gland could be cancerous. But the chances are very low... so I figure I've just got one of the common adrenal benign growths.

Now, when am I going to know results? Good question! I still need a few more appts. lined up. Dr. Yee's assistant will be arranging the MRI/CAT scan with one of Vancouver's top radiologists. She says there are others we could go with and they are good, but Dr. Yee wants me to see Dr. Mayo.... so that appt. might be a little later. Depending on whether he (Dr. Mayo) decides the MRI or the CAT scan will be best, I may have to have more blood work done before the scan. I will be calling Dr. Gill's office to see when an appt. will be arranged with an endocronologist... or if that is done AFTER the MRI/CAT scan. I will be seeing Dr. Gill in 2 weeks, so by then all the scans and tests should be finished.

So, there you have it. Not the best of news but if it is Scenerio 1 or 2, not the worst news either. Besides, if it IS Scenerio 1, I asked him how long it would be before I could start doing some of my hobbies and activities again. He asked if I was planning on going on a trip? I said, "No... but I plan on volunteering for the whole season down at Theatre Under The Stars... is this something I can continue with?" He said if it is scenerio 1, then he will make a point of having me ready for the summer :)

Onwards we go....

Cheryl

Friday, March 14, 2008 -- Pet Scan Results -- A mixed bag.

Dear Bloggy,

Yes, I know it's not Sunday and the last few entries seem to have been on Sundays, but since a lot of you knew I was meeting with Dr. Gill and the oncolology folk today to get the results from my PET scan, and then so many of you called last night or sent email... well, I simply have to just sit down and try and write this all down so I don't keep anyone in suspense (Ok, Jo was with me today and and since I've been home I've been on the phone with Steve, Dad, Michael P., my aunt Eileen who lives on Salt Spring Island and Doug, who I grew up with and he lives across the street... oh, and have seen in person Mimi who lives upstairs and Toby who lives across the hall from me), but NOW I'm going to type up the tonight's entry with a cuppa' tea :) Gee, do you think that sentence was long enough??? Could I possibly make it any longer???

A few things before I get into the nitty gritty of today's appt with Dr. Gill and Dr. Jennifer (I don't think I caught her last name). I do have a CD from the PET scan department and thanks to Roger Smith, I now also have the software to view these PET scan 3-D images. If I can figure out how to take the images and convert them into jpgs, then I will see what I can do to add them to the blog, but that will probably be a separate blog entry. Likewise, a few other odds and sods of what I've been up to this week, I will create a new blog entry for that chatter since I have a funny feeling tonight's blog will be plenty long enough.

Ok... here goes...

I got to the Cancer Agency at noon to get 3 vials of blood taken for the various tests that Dr. Gill had ordered. One of them is the Tumour Marker test that measures the level of CEA in the blood stream. As noted in previous blog entries, my CEA level in December registered as a 6 and in Feb as an 18. Both are considered slightly elevated with 0 being the ideal reading. Since my levels have been considered elevated, Dr. Gill ordered the PET scan which I had last Thursday and if you'd like to know what that is all about, the last entry was all about what a PET scan is all about.

After having the blood work done, I headed out for lunch and came back for my 3:15pm appt. to go over the results of the scan. Jo, who was working upstairs at the Cancer Agency, was to meet me in the waiting room on the second floor where Dr. Gill meets with her patients. Wouldn't you know it... the unit clerk came and got me EARLY, so Jo wasn't there yet! Now, in all fairness, I had it pretty much set in my head that the results were going to come back as negative and that, other than the relief of knowing nothing was found, it would have been a waste of this very expensive scan.

Luckily, Jo got there a little early so joined me in the examining room before the doctor arrived. Now, the doctor who came in, I have totally missed her last name... but her first name is Jennifer, so Dr. Jennifer came in and introductions were made. Dr. J was a lovely gal and I have to give her credit for being able to discuss and explain things in layman's terms, which she gets big brownie points for that. But I knew things were not going to be exactly the way I had expected them when I asked her if she brings good or bad news and her answer was, "Well, I'd say it's a mixed bag." To me, a "mixed bag" is NOT good news...

She said that the radioactive sugar substance used in the PET scan is absorbed by areas that show activity, be it "mestastic" or "metabolistic" (not sure if I have the spelling of either right). Something that is mestastic is usually a form of active cancer and something that is metabolistic has to do with one's metabolism. Either way, both absorb the radioactive sugar tracer and show up on the PET scan.

The scan showed a rather large (approx. 4") active mass/growth on the adrenal gland above the right kidney. It also showed a very small spot (I forget the dimension but it was small) on the lung. Their first concern is the adrenal mass. If it is cancerous, then it would explain the elevated CEA levels. What they feel will have to happen is that we get an Endocronologist involved to see if he/she can determine a plan of action. Will it be possible to surgically remove the right adrenal gland that includes this mass or is there some way of biopsying it if it can not be removed. To determine whether it can be removed will depend on a few factors... like is it easily accessible to the surgeon? After my surgery, radiation and chemo, is my body strong enough to withstand another major surgery? Is there another option that the Endo and/or surgeon can come up with? The growth is too large to get rid of with chemo, radiation or a combo of both... but if it can be surgically removed, then the followup plan would be to also go through chemo and possibly radiation again.

Needless to say, this did freak me out... I was NOT expecting this. Even Jo was taken by surprise and she came into the appt. open to whatever we might be facing. Dr. J. explained that this was a very rare and unique situation. Normally, when colon cancer spreads, it spreads to the liver or to the lung... very, very rarily does it bypass those two and spread to the adrenal glands. I asked how this could happen if there is no sign of cancer in the lymph node system and she said it's possible that it spread through the blood and not the lymph system. I then asked how come, when Dr. Brown (surgeon) who did my intestinal resection surgery, he found this adrenal mass and went back in the archives to the previous surgery (hysterectomy) I had had in 2001 and saw the same mass on those scans and since it hadn't grown in 6 years it was considered benign... now it is thought to be cancerous? Dr. J couldn't answer that so said that she would confer with Dr. Gill and Dr. Gill would be coming in to talk to me.

Well, it must have taken about 20 minutes. Jo and I discussed the reality (here we go again!) and even though I was shaken up, as usual, when under stress I tend to turn to humour. I told her that this surgery better be pretty quick because I'm not sure how much more I can milk getting attention from my friends or the gang down at TUTS... they might get tired of seeing me with a chemo pump again this summer. Jo said if she sees me down at TUTS with staples in my belly and chemo pump in hand, still selling those tickets, then she may reach her limit of how much a girl can take :) But, we also discussed the reality of not panicking and we are going to have to take it a day/procedure at a time and not to get ahead of ourselves.

After about 20 minutes (it seemed forever), Dr. Gill and Dr. J came into the room. Dr. Gill is so amazing!! No matter what, she has this way about her that I find incredibly calming. There's no doubt she is one extremely smart cookie, but even more, when a patient (me) is trying to deal with the fear of the situation, she has a way of talking and you calm right down.

She apologized for taking so long, but that I had brought up a very good point.. just how long had I had this adrenal mass and how long had my CEA levels been elevated? So the two of them went back through all my scans, the CT scans that I had done at the Cancer Agency in the last year and the CT scans I've had done at St. Paul's for both the surgery in Jan/2007 and back in 2001. The mass/growth has been around for some time... but my CEA levels have only shown an elevation since December 2007. Dr. Gill says that this changes the focus in a totally different way. She says what could be happening is that the mass/growth is what might be a "functioning growth" meaning that, since it is on the adrenal gland, it may be producing an excess of the hormone, cortisol. This cortisol hormone producing growth would also absorb the radioactive sugar tracer and could show up on the PET scan like it has and may not be cancerous at all. The key words here being "may not". So we are going to do a regiment of tests to see if I have an excess of the cortisol hormone... and if I DO, then this can actually explain a lot of things... like the muscle and bone pain I have been experiencing since November, and it would really explain my quick weight gains. The cortisol hormone regulates weight and pain management... go figure, eh??

So NOW, the plan is, like I say, to go through a heap of tests, more blood work, more tests and I believe we now get an endocronologist involved. If it IS a case of hormones gone amuck because of this growth, then the Endo guy/gal will be able to analyze the situation as to whether we remove the gland (one can function with just one adrenal gland) or regulate hormone production with meds or a combination of both (if needed).

As for the cancer issue, Dr. Gill says she is going to send me to a Lung Surgeon (Dr. Yee) and he will determine what we should do about the spot on the lung. There may be a variety of options from surgically removing it, chemo or radiation... but she's pretty sure that the plan would be to remove it surgically rather than give more chemo.

Meanwhile... since I have been having pretty intense pain in my right shoulder/arm, it's possible that it is one of the chemo long term side affects, but to try and ease some of the discomfort, she is going to arrange for me to have my portacath surgically removed.

Soooo, there you have it. It really is a mixed bag. On the one hand, the journey is not over yet... but on the other hand, it could have been a lot worse and at first, seemed like it was going to be a lot worse. Since nothing is specific and after the tests, things may change again, the good news is that I'm very hopeful that we will get over the silly old spot on the lung and the adrenal mass will end up being a functioning growth that we can stop/regulate. That will hit two birds with one stone... weight issues and pain issues!! So keep your fingers crossed that that is what it is and not something nasty :) Cheryl doesn't like nasty surprises!!

Ok... pretty long entry. I'm going to see if I can get the CD of the scans to work and if so, if I can convert them to images I can upload to the blog... but hey, that will be a separate entry :)

Ciao for now!!

Cheryl

Sunday, March 9th, 2008 - Daylight Savings begins

Hiya Bloggy,

Well, here we are, the first day of Daylight Savings.... which is 4 weeks earlier than normal this year. For the life of me, I do not understand the reasoning for this. Actually, I don't really understand the need for changing from Daylight Savings to Standard time, back to Daylight Savings, etc. I understand back in the war, it was a big deal, but nowadays, it really doesn't make sense to me. I have read that, by starting DST 4 weeks early, the amount of barrels of oil that will be saved by businesses will be in the millions. But, personally, I just don't buy that argument. Businesses are still operating their business hours, whether it's light or dark outside... so how that one hour for 4 weeks is going to make any difference is beyond me. If businesses were to shorten their business hours by one hour each day, then that would make sense... but the fact it is or isn't light for that hour... hello? Anywho... today is the first day of DST and all I find it does is confuses the poor body :)

Well, I think I'm just going to babble here for a bit because... well, it's Sunday, it's been a week since my last entry, and, well, because I can! :) It's my blog so I can write whatever I want in it, right? And that means any of you stopping by to read it have to put up with my babbling. Muhahahahaha!! A captive audience!! :)

First things first... entertainment. In this past week I've been to a Birthday party for an old friend, Audrey Wills... and of course all of us who know her. This birthday was held at a wonderful Chinese restaurant, "Sun Sui Wah" at Main and E. 23rd Ave. What a fabulous restaurant... I highly recommend it to anyone who is tired of the usual okay Chinese food... the food at this restaurant is fabulous! There's nothing really around so I'm not sure why you would ever find yourself at Main and 23rd... but hey, it's worth the drive there just for the food!! And they certainly could cater to large groups. We had a private room off the main room and there were about 50 of us. Great time was had by all!

Last night, I was with Greg and Maddalena and we saw the movie "The Other Boleyn Girl". Wow! Fabulous movie!! I was in the mood to see a nice romantic, historical period film and this was far outdid my expectations. Natalie Portman and Scarlett Johansson were both fantastic in their roles. Only Eric Bana, as King Henry, was a little weak in my opinion... but his character needed a little more time to develop since, even for those times, I don't think he would have gotten away with how quickly he changed women. Yes, he did.. but in the movie it happened just a little too quickly. But, I highly recommend anyone to go see this film!

Now, entertainment aside, I went for my PET scan on Thursday. I'm going to put some info here about the PET scan that I have learned since it actually affects me. Amazing how you just take things for granted... until you need them, or they impact your life in some way.

A PET scan stands for Positron Emission Tomography. The PET scan procedure takes 2-3 hours in total. A PET scan is a powerful diagnostic test that is having a major impact on the diagnosis and treatment of disease. Because disease is a biological process, and a PET scan is a biological imaging examination, PET scans can detect and stage most cancers, often before they are evident through other tests. PET scans can also give physicians important early information about heart disease and many neurological disorders, like Alzheimer's.

A PET scan examines the body's chemistry. Most common medical tests, like CT and MR scans, only show details about the structure of the body. A PET scan is different as it provides information about function. With a single PET scan procedure, physicians can collect images of function throughout the entire body, uncovering abnormalities that might otherwise go undetected.

For example, a PET scan is the most accurate, non-invasive way to tell whether or not a tumour is benign or malignant, sparing patients the often painful diagnostic surgeries and suggesting treatment options earlier in the course of the disease. And although cancer spreads silently in the body, a PET scan can inspect most organs of the body for cancer in a single examination!

Now... here's an interesting bit of trivia. I'm not exactly sure when this "clinical trial" for the PET scan machine at the Cancer Agency began, but I know back in 2003/2004 when Kimberley was going through her cancer journey, the only PET scan machine in Vancouver was out at the University of BC Research dept. It was not covered under the medical plan so when it was suggested this might be beneficial for Kimberley, she had to pay out of her own pocket... $2500. Dr. Gill referred me to the "Centre of Excellence for Functional Cancer Imaging", which is right there at the Cancer Agency (although it is a separate department).

Here is part of what the form was that I had signed (which made me eligible for BC Medical to pay the $2500 cost):

"You are being invited to participate in this clinical trial because you are either diagnosed with or suspected of having cancer and your doctor has determind that you require a scan to provide additional information. If you agree to participate with this clinical trial, you will undergo a Positron Emission Tomography (PET) scan, using a radio-labeled tracer called F-Fluro-Deoxy-GLucose (or F-FDG). An F-FDG PET scan combines both a Computerized Tomography (CT) scan and a PET scan done on the same machine during one procedure. For the purposes of the rest of this consent form, we will refer to this combined scan (PET and CT using the F-FDG radio-labeled tracer) as an F-FDG PET scan.

Cancer treatment and outcomes depend largely on accurate diagnosis and staging of the disease. F-FDG PET scanning may more accurately characterize disease, or determine the stage and sites of recurrent disease in many cancer types compared with conventional scanning techniques (such as CT or Magnetic Resonance Imaging - MR(). The accurate functional information that is obtained from the F-FDG PET can have a significant impact on the management of some patients with cancer. F-FDG PET is used to provide accurate pre-treatment staging of tumors, to aid in planning therapy, to monitor the response to therapy and to provide assessment of restaging/recurrence after curative therapy. PET scanning is not considered an experimental technique, but is in a clinical trial for public funding by Canada Health and BC Medical."

So, there you have it... that is what the PET scan is all about and I will know the results of it on Friday. I have to go for more blood work on Friday, with one of the tests being my CEA levels to see if they are still elevated and if so, how high. Then the PET scan will have the results if there is any recurring cancer of any kind.

My friend, Jo, will be coming with me for that visit with Dr. Gill. As far as I'm concerned, the PET scan will come back clear and then we will also be able to breathe a sigh of relief that the "slightly elevated" CEA levels are really just normal levels for me. On the other hand, if it does find anything, then thank goodness for accurate PET scans because treatment could start immediately rather than wait until the cancer produces symptoms.

Ok... this has gone on way too long for one blog entry, but hey... I thought it was interesting stuff and hope anyone who is reading it will find it interesting as well. But now, with Daylight Savings, it is after 11:30pm. I didn't sleep all that well last night, so I think it's time for me to take Bridget out to the back lane and then we both are going to go to bed. She's already in bed... so I have to wake her up, take her out, then she can go back to bed :D

Ta ta for now!

Cheryl

Sunday, March 2nd, 2008 - A new week

Dear Bloggy,

As of what time it is when I started typing this entry, it is still Sunday for 20 more minutes. I'm sure by the time I finish typing the entry, it is going to be Monday, so I wasn't sure whether to put the title line as Sunday or Monday. See the dilemma?? :)

Anywho... this is just a little babble entry because if I leave it any longer, another two weeks or longer will have gone by. Which is crazy! If I leave it 10 days to two weeks, I seriously can't remember what happened in the last 2 weeks to report on here on the blog... yet, do you think I can get my act together to make an entry when things actually happen?? Nooooo! I need a secretary!! :)

Last week (yes, it's been a whole week!) was the Oscars. No big surprises there and no wild crazy moments that make the night memorable. It seems the Hollywood crowd has all grown older or something... there just aren't the crazy actors that used to be at the Awards and we all could look forward to some craziness to happen. I still haven't seen all the nominated movies and chances are I won't be getting to them in the near future. Time to move on I guess and will catch new ones that come out. I've got my eye on wanting to see The Other Boleyn Girl so hopefully will be able to take that in one of these days soo. I missed out on seeing the last Elizabeth movie and I really do like those historical movies.

But this week is already pretty booked, so I'm not sure that I'll be able to see any movies. Tomorrow I'm going to be meeting my friend, Alison Tohill for lunch down on Granville Island. We haven't been able to get together for lunch since before Christmas, so time to catch up. On Tuesday, I'm going to meet up with Jill in the TUTS office to do some spreadsheet work. Then, if all goes according to plan, I am hoping to take a bus downtown Wednesday afternoon so I can pop in to say "hi" to the gang at work. Hehehe... this is dependent on me having enough energy every day. I'm pushing myself a bit to try and build up those energy reserves. It's interesting how some days I have the energy of the good old days and other days, I wake up knowing I'm in big trouble for the whole day :)

On Thursday, I have to go to the clinic here in the West End to have Nurse Chris flush out my portacath with heparin. This has to be done every 4 weeks when it's not being used. I'm sure Dr. Gill is wanting me to keep the portacath for awhile yet in case we ever need to use it again... but it would be fabulous if we just keep getting it flushed every 4 weeks and never have to use it again :) At some point she will then arrange for me to go to Vancouver General to have it surgically removed.

After I see Nurse Chris, I will then have a bit of time to kill before I go to the Cancer Agency to have my PET scan. Hahaha... it's not even as if I can take myself out for a nice lunch before I go to the Agency because I have to fast for 6 hours before the scan. I will be taking a good book to read because it sounds like there's a lot of waiting around. I will be there for 2 1/2 hours but the scanning process itself is only 30 minutes. So for the other 2 hours, it will be prep time and waiting. At some point I have to drink this sugar water type drink... and will also be hooked up to an IV where they will put a radioactive dye into my veins. It's the combination of the beverage and the dye that will be able to show any suspicious areas. The scan will be from the head (eyes) to the knees. I have to take a list of any surgeries I have had in my lifetime because apparently scar tissue will show up the same as active cancer cells would. So they will want to know right off the top what might be scar tissue vs an area that might cause some concern.

Anywho... I'll be glad to have that scan behind me. I won't actually know the results until the following week when I see Dr. Gill on Friday, March 14th. At that time, I will also have more blood work done at the lab at the Cancer Agency, in particular the Tumour Marker test which measures the levels of CEA in my blood.

I may have been a little misleading in the last entry. I had said that the normal reading for CEA is 0... except that everyone is different. For me, we are pretty sure the normal reading is 0 because that is what it was during the chemo sessions. The reason we are having the PET scan is the December reading (first time the test was done post chemo) the reading was slightly elevated at a 6. Now that could have just been a fluke or false positive so Dr. Gill was not concerned. At the beginning of February, the reading was an 18. So since there was a rise, she has decided to call for a PET scan. It is not much of a rise and it still may mean absolutely nothing, but best to check it out. For someone else, a 6 or 18 is very low so they would be perfectly happy with that reading. So, like I say, everyone's "norm" can be totally different and different factors can raise or lower the levels of measurement.

Well, it's now midnight. Soooo, the big question, do I go to bed with a good book or do I stay here at the computer and out of the corner of my eye watch CSI: Miami?? :D

Oh, and I forgot... must make a note for myself to go to the Book Warehouse tomorrow and pick up a copy of Eckhart Tolle's "A New Earth". This is currently one of the books on Oprah's Book of the Month Club and she thinks the world of this author. So much so that she is putting on a world first online class with the author about the book. It is going to be every Monday at 6pm PST for ten Mondays. You can register on her website (http://www.oprah.com) for the class. Of course, I am behind in that I haven't picked up the book yet and it would be ideal to have read the whole thing before tomorrow's class. But, I thought I would read the book and even though I won't have read it by tomorrow at 6pm, I'd check out the class and see if I enjoy it.

Hahaha and I DID finally get to finish tidying and clearing out my front hallway today. I've been wanting to do this for months. You know how it goes... you start leaving the mail and then a bag goes here and a bag goes there. I do NOT have a big hallway so it doesn't take much for it to look totally cluttered... and I ended up having a lot in it. It is now all neat and no clutter! Yayayaya! This is just the beginning... I'm going to go methodically through the whole apartment, and then the closets. And hopefully I will get the whole apartment decluttered and simplified before summer :D

Ciao for now!

Cheryl

Friday, February 22nd, 2007

Hiya Bloggy,

Just me again... another ten days has gone by without an update. What can I say? I suppose I can come up with some wonderful, elaborate excuses that will sound really good, but what the heck... someone is bound to catch me on that ;)

Naaaa... the truth is, there was a week of evenings and two weekends where we were busy with TUTS auditions. That was a lot of fun but it did seem to tire me out more than I thought it would. Go figure, eh? Here are a few pictures.. well, only a couple because, although I had my camera with me the whole time, I kept forgetting to take any pictures, which is sooo not like me!

Here we have Roxie, James Pollard's terrier, and Bridget, waiting patiently at the TUTS office for their carrot treats. Both are very patient girls!

Back at the Church hall where the auditions were being held, here are some of the kids and Aaron. You have to give it to the kids... they sure are darn cute!!

And here we have the next generation.. President James Cronk and a future star of TUTS!

Anywho... like I say the auditions were fun and tiring, but I was glad I helped work the audition desk.

Since then, I have gone to see the Rheumatologist and he's pretty sure that I'm not showing any signs of rheumatoid arthritis. Phew!! That is great news since I'm not sure I could take that on as well. He wants to keep an eye one things but is pretty sure that the pain I have been going through now for a few months is long term effects of the chemo. Which chemo, or whether it's a combination of one or more chemos, he can't be sure. He wants us to keep an eye on it over the long term but feels that within 6-12 months, some of the pain should start going away, although the osteo-arthritis in my knees will never up and disappear, but I had that prior to the chemo. He's saying that any of the joint/muscle pain that has come on since the chemo, it should hopefully go away... whether all of it or just some of it, only time will tell.

Meanwhile, I now have a PET scan appt... it is set for March 6 in the afternoon. This scan should take about 2 1/2 hours in total... and if truth be known, I can't wait until this one is behind me. There's just something a little nerve-wracking about having to have this scan done because the CEA levels are elevated. I'm keeping my fingers crossed that it all means nothing, it's just I don't like the fact the levels have been elevated twice in a row. Apparently a "normal" reading is 0. When I had mine done in December, my reading was a 6, which they consider slightly elevated. My reading in February was an 18, which they consider more than slightly elevated, but she didn't say if this was considerably more or ?? But it's elevated enough to warrant a PET scan. So I will be glad when it's all over... and even more glad if the scan comes back with no sign of anything to be concerned about.

Meanwhile... I'm taking it easy at home tonight. I'm kind of tired and this morning woke up with bad joint pain in the right elbow, upper arm and shoulder. The shoulder has been a problem for awhile and seems to be a little immune to the pain killers, although tonight it's feeling better as long as I'm not doing anything .

Meanwhile... it doesn't look like I'm going to catch up with getting to see all the Oscar nominated movies. I've seen Juno and Atonement... but the others? Oh well! Tomorrow, if I'm doing ok pain-wise, I am going to head to the local cinema here in the West End to see "Across the Universe". I know it's no longer at the mainstream cinemas, but it's one I really wanted to see on the big screen and I found out it's playing at the Denman Place Cinema tomorrow at 2:30pm.

Sunday, it will be off to my friend, Pat's for the Oscars! Sometime between now and then, I am going to bake a cheesecake to take with me... hahaha... now if only I had an Oscar shaped springform pan!

Until next time... enjoy the wonderful spring weather!! Hahaha... of course, having said that, the rain will now arrive!

Ciao!

Cheryl

Monday, February 11th, 2008

Hiya Blogster!! And all you Blogees (readers of the Blog) :)

I know, I know, you don't have to yell at me for being soooo out of date with the Bloggy. Believe it or not, I DID have every intention of updating the blog the weekend I got home from Hawaii, which was.. ya, well, a week ago . Now that I've left it this long, I am not sure what to report on since anything over a couple of days and I tend to forget what happened! I'm thinking I have some pictures on my camera, but alas... it would mean getting up and hunting down the camera... and then, quite possibly the pictures are out of date. I know there are probably a couple from the last day or two in Hawaii... but that is sooo old news now! So, I think I'm just going to have to start over and any pictures I take from here on in, those will be the ones I post!

Ok, where to start? I do remember coming home on a very packed, not an empty seat on the plane, flight. The flight home was ok, although I must admit, I did feel like a sardine and I hate feeling that claustrophobic for 6 hours!! But I did make it home ok... and wouldn't you know it, I swear the plane parked in Burnaby and we had to walk back to the terminal... that is how long the walk was. I had waited until most everyone was off the plane before I headed out... and by the time I got to customs, the people were all gone! I was the only one wandering all by my lonesome in that huge Customs area!! Poor Alice was looking all over for me, wondering if I had just up and disappeared. And Walter, bless his heart, got my luggage for me and put it on one of the luggage carts. From the airport, I took a taxi to my friends', Stephanie and Tony's house out in Tsawwassen.

Now, here's an interesting thing... for those of you following the US economy and, in particular, the US dollar. All us Canadians have always looked up to the US$. As a matter of fact, there is a generation or two of Canadians who have only known the US$ to always be higher than the Canadian dollar. Well, when I went to pay the taxi fare, I didn't have enough Canadian currency on me so I tried to pay with half Canadian and half American money. He was very nice, but said that he couldn't accept the American money but would take Canadian or a credit card. Tony came out at that point so when he saw the problem, he went back in and got the Canadian that I needed. I have never, in all my life, been anywhere in Canada where they did not only accept American cash, but LOVED American cash better than our own money!! So this is just a sign of the times... something I've been in discussion groups with others for a long time.

Anywho... I did get out to Tsawwassen ok and what Tony did was put the dogs out in the backyard ... then I came in and stood in the far corner. He then let both Bridget and Reagan in. Bridget immediately had her nose in the air and made a beeline for the kitchen. I wasn't there, so she came running back into the family room... and then she spotted me. Then the excitement began! She was very excited to see her mom... screaming, hollering and making all sorts of noise. When I picked her up, she was Velcro Dog... with a paw around each side of my neck and hundreds of puppy kisses. This lasted oh, 10-15 minutes, and then it was as if I had never gone ;) Until we got home... then I got the cold shoulder for the next 2 days. How DARE I abandon her!! Luckily, she got over that and she is now back to her old puppy-loving self :)

The rest of the week, I pretty much needed just to try and adjust back to the cooler (ok, at times, COLDER) weather. I did go out to see Dad, Pat, Jer and Erin out at Dad's place when I got home, but it's amazing how the drive out and back actually did tire me out. I'm not sure if it was the drive out/back or that I went out so soon after traveling by plane... but I was knackered!

This past weekend, for no reason, I got very sick on Friday night (well, the wee hours of Saturday morning). It wasn't food poisoning because I felt fine... and didn't get any of the normal waves of nausea. But oy vey, was I ever sick to my stomach!! That lasted for about 5 hours, every hour or so. Even now, I have no idea what brought that on!!

Lucky for me, it was over in 5 hours, because this past weekend was the start of the auditions for Theatre Under The Stars. WOW... can you believe that?? Auditioning for the two shows that make summer magic around here! Come heck or high water... even with the amount of joint/bone/muscle pain I am going through (hopefully it will be long gone by then ??), I will once again be volunteering to be part of the incredible TUTS team! This year, the two summer shows will be the revised version (written for Bernadette Peters) "Annie Get Your Gun" and "Jesus Christ, Superstar!" Two great musicals... and if we get the good weather... well, wow! But first, the auditions! And we have gone hi-tech this year!! :D We have two older iMacs set up on a table, hooked up to a printer. Each of the iMacs have a cute little webcam that is on one of those twisty arms. So when someone comes up to register to audition, we can fill out the first part of their audition form (name, address, email, phone, etc), then at the same time, do a command/C which activates the web cam to take a still picture. Voila! We can then paste the picture right on the top left hand corner of the audition form, print off two copies (one for each show's set of directors) and the auditionee is ready to audition. This is the first time I have ever seen this done at an audition and it is brilliant... I'm surprised no one has thought of it before! The directors/choreographers/musical directors can now remember who was who when they go through the forms prior to callback auditions because the pictures are of the auditionees on the day of the auditions and not the lovely, professional headshots that actors turn in, where they look gorgeous, but not necessarily how they looked when they came in. Sooooo... I will be helping with the auditions in the evening this week and then again next weekend. I am staffing the computer/pictures, then when it's not busy, I am putting together a spreadsheet of auditionee's name, ph, email, address so these can be sorted easily when we need to get in touch with them later this week.

Ok... that sort of brings us to today. Today I went to see my oncologist, Dr. Gill. I am just going to paste the information I sent in an email to my family so I don't have to type it all over again...

My major complaint for the past umpteen months has been the joint and muscle pain. Prior to all this cancer stuff, I DID have osteo-arthritis in both knees and, as much as a pain as it is, it was something I was used to. The rest of me worked the same way as it always has. Since about the end of August, I was starting to notice more pains... like arthritis but in other joints... and as time went on and we finished the chemo treatments, the joint pain continued to get worse. Now, my oncologist is thinking that the joint pain is just the long term side affects from the chemo... and with time it may get better. Either that, or the chemo has triggered off any dormant arthritis I may have had in my body, so now it is her in full force. Before saying it's chemo-related or not, she is referring me to a rheumatologist and he/she will put me through some tests to see if I have any signs of rheumatoid arthritis (the crippling kind) or any other soft tissue damage. She doesn't think I do have any rheumatoid arthritis because I show no signs of inflammed joints, redness, etc. But, she wants to rule this out as a cause and if we can rule it out then we can be pretty confident that the joint pain, be it osteo-arthritis or a chemo-related infliction... it has probably been triggered by the chemo.

Then we got to talking about the blood work (which I had totally forgotten about since the joint pain was my main concern)... and my CEA levels are elevated again, even higher than in December. Some of you will remember that the CEA test is the one they call the "Tumour Marker". It does not mean they are marking a tumour, it's just the name of the test where they measure this substance in the blood. If the test shows the substance is elevated then it "COULD" mean there is cancer somewhere in the body or blood system, but it is not a "for sure" thing. It is just one of the tools they use to monitor.

Since my CEA levels were elevated again, Dr. Gill is going to go ahead with ordering another CAT scan, as well, she is going to order a PET scan. The CAT scan will be the same as the one they did in December where they will scan the whole abdominal area. With the PET scan, the procedure is they give me a special kind of sugar which, if there IS cancer, it will absorb this sugar and then show up on the scan as a glow of some sort. The PET scan is of the whole body, where as the CAT scan is specific to the abdomen.

So, that's where we are at the moment. There is no rush for these scans... it's not like we have to rush in an have them done in the next 48 hours. But it will be the PET scan that takes longer to book than the CAT scan, so they will probably book them at the same time. Chances are, I will have both scans and an appt. with the Rheumatologist within the next 4 weeks. Once they are set up, they will mail me the dates/times.

Okey dokey... this was a lot of babble and no pictures to break up the babble. But what's a girl to do?? I will add pictures later as I take them ... or I may even do something sneaky and post some pictures of friends/family once I get their permission :)

Soooo... until later... ciao for now!!

Cheryl