I know, I know... it's been ages since the last entry! But as most of you know, I am practically living in Stanley Park these days
Of course, I did create a mailout and scheduled it to go out to 8000+ people for the two TUTS shows ;) Plus answered a couple of emails that were enquiring about the TUTS Musical Theatre Camps that we are having in August. So, ok, I answered them too
Basically, I was trying to keep myself busy at home, while still taking the time to relax, rest and not be on my feet. I had to keep myself busy and distracted because today was the day I was going for my Lung CAT scan and blood work. No matter how things have been before, or how I'm feeling, one still gets "Scan Anxiety" wondering what the scan is going to find. Will the nodules in my lungs have started to grow? Will I have to start chemo this summer? All these types of questions run through one's head which is totally understandable.
Anywho... what a long, exhausting day!! My scan was scheduled for 8:15am, which mean I had to be there by 8:00am. Keeping in mind, it takes a good two hours (on a good day) for my joints to be flexible enough to leave the apartment. That meant getting up at 6am and taking my pain meds early (which I did).
When I got there, they had to put an IV in for the contrast dye. This was the first problem of the day... of course my veins were not going to cooperate. It took a good half hour for them to finally get one in my left arm. My right arm has so many bruises now from where they tried, they got it in and then the vein collapsed or blew. Even the one they did finally get in... while I was in the CAT scan machine, the vein blew and they had to stop everything immediately since the contrast dye was now going outside of the vein. But at least enough dye was in my system for them to have finished the picture of the lungs. Phew!
Then it was off to the lab (across the hall) to have some blood drawn for the CEA test. They measure the CEA in your blood, as a tool/indicator if there is any active cancer in your system. Unfortunately, CEA is not a good indicator for everyone. Some people it works great, other people their readings don't change whether they have active cancer or not. Lucky for me, it's always been a good indicator.
Once the blood was taken, I was free to go. It was now 10am and I didn't have to be back until 1:45pm to see my oncologist to get the results from both the scan and the CEA test. So I headed downtown and did a bit of retail therapy. Nothing to get excited about... just so much needed things lie a mattress cover to go over the foam topper and the mattress itself. I then went home but that was kind of silly because I only had 45 mins before I had to turn around and go back to the Cancer Agency.
When I went back and checked in, I was told, "Oh Cheryl, you don't have an appt. with Dr. Gill today. I said, I most certainly do... it was on the same card that said I had a CAT scan appt. and blood work appt. But no, they were insistent that my appt. with Dr. Gill was booked for July 28th and then it was canceled and re-booked for July 31st. By now, I'm getting downright annoyed... if they are making all these changes to the appt. when were they planning on telling me?? They said that I should have gotten a notice in the mail... I didn't. How about a phone call? Nope. Oh, dear... well we are terribly sorry but your appt. is now for July 31st. I very quietly said that they are mistaken... I was told the appt. was this afternoon. I have booked my whole day off to be available for all these appts. of which I was given a card with the date and times. I am here and I would like to see Dr. Gill, who is my oncologist and whom I had an appt. with today. Had someone taken the time to tell me the appt. had changed... twice... then fair enough. But no one did, so I would like to see Dr. Gill today, while I'm here.
Of course, that got them all in a flap and one of them had to go find their supervisor. So I sat in the waiting room and waited until the gal came back and said Dr. Gill would see me but it wouldn't be until 4pm (at this point, it was 2pm). I said fine... I will wait here at the Cancer Agency until the appt. (ok, but I did go downstairs to the cafeteria for a coffee because by now my nerves are getting a bit frazzled). At this point I had no idea if I was going to get good news or if I was a walking time bomb and would have to go back on chemo within a week or so.
Finally, I got to see Dr. Gill at 4:15pm!! By then, I was feeling a tad emotional, although managed to keep it together. Sharlene (Dr. Gill) apologized for the mixup and had no idea how that had happened... then explained that she always would have them book an appt. for a couple of days after the scan and bloodwork so that she had time to get the reports back. So, technically she had nothing to tell me since she didn't have the results... but told me to wait just a little longer and she's going to see if she can get someone down in radiology to give her a verbal report over the phone... likewise, the same with the lab who was doing the CEA test with the blood.
FINALLY, we got to talk... just her and I. When I'm in her presence, I calm right down... she just has that way about her. She is calm, compassionate and knows how to discuss without sounding all doctor-like.
The results??
I'm THRILLED with them!! Ok, the 11 metastacized nodules (aka "mets") in my lungs are still there. But there has been no growth with them since the last scan in March!! Yayayayaya!! AND, there is absolutely no new nodules or mets which is huge!! So, they can officially say that the mets in my lungs are "stable".
As for the CEA results... the reading is 1.6. Anything under 5.0 is considered a "normal reading". So I'm well within the "normal" zone. If one's reading was above 5.0, then they would take another reading a month later. If it was still above 5.0 and showing signs of going higher, then that could be a good indicator that there is active cancer somewhere in your body. It won't say where the cancer is, just that there is cancer activity (aka metabolic activity) in your body. My reading of 1.6 means that there is no metabolic activity at this time.
So I am very, very happy today. It means that I get to have another 4 months treatment-free!!! No chemo for me yet :) Yippppeee!!
Dr. Gill said she was extremely pleased with this and that I have certainly not followed the pattern of a Stage IV Colon Cancer patient. She did remind me that the fact these mets in the lungs are not active right now, that does not mean they won't become active at some point. It's a given that they will and at that time she says she would recommend chemo to try and keep them in check and under control. But when they will become active is anyone's guess. It could be in the next 4 months, or it could be 20 years from now (says I
So the next decision we had to make was about the upcoming scans. She says that she wants us to keep tabs on the mets, on the other hand, she doesn't want to subject me to unnecessary scans/radiation. So she suggested that for the next year, we do the scans every 4 months (that means 3 more scans between now and next July). If next July I am still stable with no growth and no need of chemo or treatment, then we will change the scan schedule to every 6 months.
The fact she's even talking there's a possiblity that I will only need scans every six months is incredible!!! Yes, we know Stage IV is incurable, but if we can get to the point where I'm only being checked twice/year...that's as good as being cured as far as I'm concerned. Being cured but having someone keeping tabs on me that it doesn't start up and I don't know it ;)
Sooooooo... I beez one heck of a happy camper tonight!!! :D It's like walking around in a dream and I have to keep pinching myself :) :)
Huggggggs,
Cheryl
