A fun-filled CT scan day

Today's CT scan was uneventful. A CT scan with the contrast injection is so easy - they set up an injection line, you go through the donut, and they give you the contrast via the injection line, and you go through the donut again. The whole thing takes about 15 or 20 minutes (including waiting time). My nurse was weird - she kept calling me things like "honey" and "dear" and "my love". She called other patients these things too but it was still on the weird side.

I asked the nurse where the Freeport Health Center is and she asked me, "when you leave here to go home, which way do you go?" I told her that I went north along Weber and she told me to go south on Weber; when I got to Fairway road, keep going and it's on the left before the bridge. I said, "so it's by Fairview Mall, right?" and she said, "the parking lot is on the left." And then I said, "so it's by Fairview Mall?" and she said, "the entrance is on the left from the parking lot and it's only about 20 steps in." I think it's by Fairview Mall.

The reason that I asked is that tomorrow I get to have a mammogram there and I wasn't sure where the center was. I haven't had one of these in a while but there's a weird thing going on where I had the last biopsy done. There's some kind of thickening there again; we think it's scar tissue from the core needle biopsy. Since it's most likely scar tissue, it's probably not worth doing another biopsy so we'll do the mammogram. Besides, the cancer is more likely to grow in the breast right now since my sternal mets are stable and so doing mammograms is a good idea.

No dentist for now

I called my dentist but they're on vacation until September 15th. :( Not that I *want* to see the dentist, really; my sinuses have been aching a bit, making my teeth ache, and I don't really want my dentist poking around in my mouth just now. I'll keep an eye on my front teeth for now. Hopefully they won't shift any more.

I'm getting much better at this whole "getting up in the morning and staying awake all day" thing. I almost never have naps and I've been getting up around 9:30 or 10am and getting to sleep around 11:30pm or midnight. This is great news, as far as I'm concerned, because it means that I can actually do stuff during the day, if I want.

And my pain is totally under control; I don't seem to have breakthrough pain now. The worst that happens is that I can start to go through withdrawl when the pain patches need to be changed. It starts with a woogly back and gets so that most of my skin and muscles end up twitching. Then I get clammy and start to feel anxious and nauseous. Yep. That's opiate withdrawl for you. It sucks, I'll tell you, but it doesn't happen all that often so it's a smallish price to pay to be pain-free.

I am still working on that dress - I've got the collar figured out and cut and I'll hopefully be able to get more done tomorrow. The end is in sight - I can hardly wait!

How much control do we have?

I managed to get my hands on today's New York Times magazine. Back when I got the Sunday Times I'd skim through the magazine without finding all that much of interest. Today I read the magazine from cover to cover.

The article that caught my eye was one that included a segment on why women who'd had breast cancer thought they didn't have a recurrence. The number one answer was a positive attitude, and at the very bottom was luck and Tamoxifen (4%). I thought it was odd that people give their positive attitude greater weight to their recurrence-free life than they do their treatments.

Having a positive attitude isn't all bad, as long as it's not forced and the person is genuinely happy and relatively calm. In that case, I can see how the person would not have as strong a fight-or-flight response to stress which would in turn put less strain on the immune system. I just don't know that this will prevent a breast cancer recurrence. What about all those people that ate really well, took care of their bodies, and were positive people, and who still got breast cancer? It may be that there are things other than a good diet, exercise, healthy living, and treatment that will prevent recurrence, but I don't know what those things are and I don't know if a positive attitude is it.

The thing that bothers me most with the idea that a positive attitude will prevent breast cancer is that this implies that a negative attitude will cause breast cancer and I think that's wrong. If people start thinking that way, then it's a small step to thinking that a person caused their cancer and then judging them accordingly. I know this isn't fair but it's not that unreasonable. Where do we draw the line? At what point are we responsible for a major medical problem like breast cancer?

Reasons for the rash reaction

Sorry there was no post yesterday - I went to bed very early because I was quite tired and had to be up early.

My oncologist called and said that she talked to the pharmacist about my rash. Apparently he said that the fentanyl patch releases a histamine when it's on the skin (taping it down releases more) and so when patch is removed and another one is placed, there's extra histamine released. I can normally handle this through my allergy meds.

However, Pamidronate also releases a histamine in the first 24 hours after it's been given. So if the patch is not changed, I can handle the amount of histamine. But if the patch is changed, the three sources of histamine is too much for me and I break out like that. To prevent this from happening, I should take an anti-histamine (preferably a non-drowsy one) before the Pamidronate.

I saw my family doctor today and he's not sure that it's totally an allergic reaction. Based on the pictures we took and the remnants of the rash on my arm, he thinks that I had an infection of some sort. He's given me a prescription for Keflex (an antibiotic) and I'm to take this at the first sign of such a rash.

It's good to know that I'm not crazy and that the rash was real. I guess it might have been better if I'd had the rash looked at earlier but at least I have plans for future Pamidronate infusions.

I tell you, this cancer treatment stuff is sure complicated.

A very, very happy day

I saw my oncologist today. As we knew, my test results are very good. It turns out that there are some tiny, tiny sclerotic lesions on my left pelvic bone that showed up on the CT 6 months ago as well, but we looked at the latest CT scan and didn't see anything. So if there is anything there, it's so tiny that it's hardly worth mentioning. Also, the lesions are sclerotic, which my oncologist says means that the bone is being built up by the bisphosphonate. We agreed to not worry about the lesions we couldn't see. And of course we also know that the bone scan was clear.

I asked my oncologist about the rash I'd had but she didn't know of any weird interaction between fentanyl and Pamidronate. She was going to check with the pharmacist whether there's any known interaction there. I see my family doctor this week and I'll talk to him about it, too.

One of the things that I said to my oncologist was that I've been stable on one treatment for two years and that I figured I would have a "good run" - meaning that I expect to live for a while yet. I know that past performance doesn't predict future performance, but with only one bone affected, chances are good that I'll be around for a while. My oncologist agreed!!!!!! Whoo hoo!!!!



I know I haven't talked about this much here, but I'm still thinking of returning to work. I'm feeling so much better and so much more on the ball - I feel like I really get things again!!!! - and I'm worried that that I will get bored sewing and making jewelry all day. I can feel the itch to do more and to be working again, and when I think about it I'm excited, not scared. So I talked my oncologist about the possibility of returning to work and she fully supports the idea; she said that she has patients that work if they want to. She also said that if it turns out that it's too much for me at any time, she'd write a note saying that I couldn't work for medical reasons. This is a huuuuuge relief because it gives me an exit strategy (unlike, say, the war in Iraq).



I haven't made a final decision about returning to work, of course, and I won't do that for a couple of months or so. The idea will be staying in the back of my head, though.

To top off all of this awesome news, a pattern I bought last week arrived today! It's this one and I love it because of the square neckline and curved belt. I'm going to make a version with short sleeves and a straight skirt first and then possibly one with a fuller skirt. I can hardly wait!

I get to sew some more

Sorry there was no post yesterday - I had Pamidronate and it knocked me out at 7pm. I did wake up at 1am and watched Beneath the Planet of the Apes but when I went to bed afterward at 3am I stayed there until 1pm today. So I was tired.

I've received all of the vintage patterns I ordered, and the person who sent me the last two sent me one additional one. :) Someone on etsy also asked to trade patterns for earrings and I'm definitely not going to say no to that! I get three patterns and I am sending out two pairs of earrings.

Now I just need to get sewing. On Monday, after my doctor's appointments, I stopped by Fabricland and discovered that they were having a sale. So I bought the fabrics that I'd had my eye on... and I have patterns to go with them, too. I'm hoping to have some new stuff made before we go to Lexington, KY for the International Juggler's Association festival. So I have a deadline of sorts, too :)

Stable!

I saw my family doctor today and he had my CT and bone scan results. They both showed nothing other than the sternal mets that I've had for a couple of years now. In other words, it looks like my cancer is stable. Yes!!!!! I was thrilled when I found this out and I'm still quite excited about it. I did a really big happy dance.

Later on I thought about my dad and how he'd be so happy for me and how it was Father's Day yesterday and how I was in Edmonton with my parents last year for Father's Day when things were starting (but we didn't know then how bad things were) and I dissolved into a puddle of tears. I ended up crying myself to sleep in a nap and so I missed bellydance class today. I haven't cried this hard since the day he died. Grief strikes in unexpected ways, even now. I love you, Pere, and I miss you so much.

End of my scan-o-rama

I got a pleasant surprise at the CT scan today. Instead of having to drink the "tasty" barium drink for the abdominal CT scan, I only had to drink 1L of water over an hour. That was much tastier and easier on my empty tummy.

The CT scan went smoothly, because really they're just taking a few images and all of the readings and interpretations are done after. I ran into a couple of the people from my Spirituality and Healing group so we had a great time. I wonder what the other people in the waiting room were thinking when we were talking about the finer points of metastatic breast cancer. It isn't a conversation topic that can be heard in very many places, that's for sure.

I was very tired this morning because I'd over-caffeinated myself yesterday and didn't sleep well last night. Therefore, I had a two-hour nap this afternoon and am looking forward to sleeping soundly tonight.

I'll tell you, I'm glad that the scans are over for now. It can be hard to go through the scans because there's an underlying fear about what they're going to show. Now that the scans are over, I can put them out of my head until results day.

Bone scan day

The entire bone scan procedure takes a long time. First you're injected with a radioactive tracer that settles in your bones. Then you wait three hours, and then you lie still for about half an hour while a big "camera" goes over you and measures the radioactivity in the bones (areas with extra or not enough activity warrant further investigation). The entire process takes about four hours or so.

The radioactive tracer is excreted through the urine, so during your three-hour tour you have to drink a lot of liquids. They want you to pee a lot, too, so it's important to stick around someplace where you can do that.

I'd heard a story about a woman who ended up with a weird "spot" of the tracer on her thigh which ended up being caused by a splash-back incident. I asked the technician about this and she said that this sort of thing happens all the time; they'll either take extra scans or wash the affected spot (or both) to see what's going on. She said that it usually happens to men and that the spots usually appear on their scalps. She also said that the men didn't always clue in right away as to why the technician was washing their head when they were just having a bone scan.

The moral of that story is that if you need to have a bone scan, wash carefully and thoroughly. Every time. :)

Anyways, aside from the boredom, the scan went well. They took the extra sternal scans that they take and that was it. Funny, a lot of people feel warm as the camera sensor moves over them; I do feel that, but I also feel tingling as the camera is over each area. It's very strange and feels like things are rising from the bone through the skin up to the camera above.

Tomorrow is my CT scan. There's less time involved, but also less food and the "wonderful" barium drink.

Annual scan-a-thon brought to you by Indiana Jones

We saw Indiana Jones and the Kingdom of the Crystal Skull today. We both enjoyed it very much. It was a good Indiana Jones action movie. Sure, there were some plot holes and some strange CGI things, but it was a satisfying story to watch and experience. I'd recommend it, if you haven't seen it already.

This is scan-a-palooza week for me. My oncologist is scanning me once per year so that we can keep track of how "things" (like, my cancer) are going. Tomorrow I have a bone scan and then on Tuesday we'll get my tumour markers and do a CT scan from my neck to my pelvis. I decided not to do a brain scan because it's highly unlikely that my cancer will head for my brain before it heads for anything else.

One of the things I don't like about scans is that they happen early in the morning. I get my bone scan injection tomorrow at 8:15(!!) am with the scan itself following at 11:15am. On Tuesday I have blood drawn for the tumour markers at 9:30 with the CT scan prep at 10am and the CT scan itself at 11am. And I can't eat after 6am that day. Yeesh. I wish I could sleep in a bit for these as I'm still not good at getting up quite that early.

I won't get the results from these scans until I see my oncologist on June 24 (or possibly on June 12, when I see my family doctor, if he has the scan results and I ask for them - which I may not do). I'm not going to worry about the results until much later because there's no point doing that - the results will come soon enough and no amount of fretting or worrying will change a thing. Well, I can say that until the night of the 23rd, at which point I can almost guarantee that I'll be cranky and nervous because I get my results then :)

Sewing fun

Ian and I put up some shelves in my sewing room today. I'm thrilled! I'm going to use them to store the stuff that is currently in mountainous piles around my machines - like patterns, stuff I'm also working on, cutting things, extra pieces, and so on. We also put a light under the shelf above my cutting area and that will make things much, much easier when I'm working there. It can be hard to see otherwise. I'm looking forward to working there now :)

Unfortunately, my serger is behaving badly these days :( There's a thin needle-thing in the throat plate that I think is out of place. The lower looper thread is somehow putting additional tension on the outside straight stitch so that it skips and sometimes breaks. Once it breaks the threads get messed up. If I go slow and be careful and watch (and listen carefully - I can hear the thread doing something strange), I can use the serger. But once this bag is done, I'm going to take the serger in for service. I've had it for three years or so and it's never been serviced so it's past time.

I had my Pamidronate today and I used the emla cream and it made a HUGE difference!!! I had no pain when they accessed my port. Yay! I messed up, though; most of the port is underneath my scar (which is huge and not healed) and it's hard to access it if I'm lying flat, which I was. The nurse and I were talking and she cleaned the area to make it sterile when I put my finger on the port to show her how she could access it if I was sitting up a bit. I wasn't supposed to touch the area because I made it unsterile. Oooops. I won't do that again.

I'm feeling ok but a bit tired and so we took it easy tonight - except to put up the shelves and to tidy up the sewing room a tiny bit.

Almost normal

I was up very early today as I had a dentist's appointment. My teeth are nice and shiny clean again :) I managed to stay awake until just after supper when I had to sleep for an hour or so; this tells me that I'm not quite ready for a normal life just yet.

Of course I may have been extra tired because I had a hard time sleeping last night. I kept waking up and I was thinking a lot about my dad so it was harder to get back to sleep. As well, I'm trying to reduce my Oxycontin intake and I think I'm running into withdrawl symptoms - woogly back and hot flashes - which wake me in the middle of the night.

So maybe I'll get to have a normal life if I can sleep like normal people. At least I got some stuff done during the day today. I'll tell you, the thought that my cancer has stabilized - which we won't know until I get my scan results at the end of June - is quite exciting. I'd like to think that if I really am stable and I can be normal, that I might work again. What an odd feeling.

Tumour marker results

I got my tumour marker results today, and I have good news: they dropped to 35.8! That's down from 46.2 the last time we did the markers some months ago. 30 is normal so it seems like mine are heading in that direction. That's great news :)

I'd guess that there's no recurrence in the breast since the markers are so low. If we could just get this fatigue under control, I could live a "normal" life again, maybe :)

So much for good intentions

I'd meant to go to my Spirituality and Healing group but when Ian called around lunchtime, I mumbled something along the lines of "I'm too sleepy" and so didn't go. When the phone rang again and it was Ian, I was surprised that he was calling back so quickly. He said he was on his way home for curling and when I asked what time it was, he said that it was five minutes to 6pm. Oh. I guess I won't be curling tonight, either.

I'd planned to sew a bit but I've only been awake about three hours and doubt that I'll do any sewing. I did talk to a good friend of mine, which was fantastic (I've missed her a lot) and I watched some tv but that was it. I guess that's enough.

The reason I slept that long - around 18 or 19 hours altogether - was because of the Pamidronate infusion. I feel a lot better now and think tomorrow will be normal, but it is also normal that the Pamidronate causes some tiredness. Anything that causes tiredness seems to knock me right out for a while.

On the bright side, I got my birthday present from my mom - two books on advanced sewing techniques!!!!! As soon as they arrived yesterday I sat down and skimmed through both, cover to cover. I can't wait to use the techniques in the books :)

Pamidronate infusion

Getting the blood drawn and the Pamidronate infused was a LOT easier with the port. It was a little tender when they accessed and de-accessed the port but otherwise it didn't hurt. It's kind of cool because once it's accessed because there's a tiny needle in the port and then at right angles there's a tube about 1/8" thick. At the end of the tube is a thingy that they can use to screw in other things. They stuck a needle in the end to draw blood and give the saline and then the heparin flush.

The Pamidronate was screwed into the tube. The Pamidronate is in a balloon in a bottle and the vacuum suction draws the fluid out of the balloon. When the balloon hits the tube, the Pamidronate infusion is over. The nurse has saline and Heparin syringes with screwy-inny things that go into line; they use that to flush the Pamidronate through the port and then to prevent clotting.

The Pamidronate infusion does make me very sleepy and I'm a bit woogly today. I left my Fentanyl patch on for too long and it ran out last night so I started getting withdrawl symptoms today. Sigh. I'm also not very hungry today and I'm still tired. I hope that tomorrow is better.

Where did the snow come from?

I finished the dress in plenty of time (and I think it looks awesome, even though I know it isn't perfect) but the weather turned against us. Snow started falling around 3pm or so and by 5:30 we had almost three inches of heavy, wet snow. The roads were slick and we decided that we shouldn't risk ourselves by driving to Stratford. We will have to remember Kevin in our own ways instead as we can't make it to the funeral tomorrow.

I was looking forward to seeing the team, even though the circumstances suck, but that will have to wait. I hope to see one or more people this weekend; that Fabricland is having a 50% off sale for members. I have a membership for Mississauga and I hope that it can be transferred to Stratford.

Tomorrow I have my Pamidronate infusion and if all goes well, they'll be using my port for the first time. It's really healed well, except for one end where the stitch came up. It hasn't dissolved yet so they'll have to take it off tomorrow. It's going to be a long day, as I arrive at 12:40pm for bloodwork and then I have the infusion starting at 2:45pm. If it started earlier, I might make it to bellydance, but there's no way that I'll make it there in time. I hope the infusion goes well tomorrow.

Feeling better

I went to my Spirituality and Healing group today and I'm very glad that I did. The person who'd been taking notes during sharing wasn't there and I was very comfortable in the group. I felt fully supported and embraced by everyone, which was a nice feeling. I'll be going more regularly now, I think. I've missed this group.

I also managed to curl today - yay! I was worried that my new port would give me problems but aside from having to sweep on one side only, I felt fine. The port area is healing up nicely, too :)

My doctor's office has called my oncologist to see if she can set up a biopsy of the thickened scar tissue quickly. Since my surgeon is out of town it sort of makes sense to try and do this through the cancer center. I don't know how quickly they'll get around to scheduling it but that's ok. I see my oncologist in three weeks anyways so if nothing is scheduled beforehand I can talk to her then.

Results are in

As you probably remember, my surgeon did a fine-needle biopsy of a thickening that he found on my latest lumpectomy scar about 10 days ago. The results are in and the sample that my surgeon took showed ductal cells but nothing abnormal. However, because of my history, the report recommends a repeat test. My family doctor is thinking about the best way to get a new test done quickly since my surgeon is on vacation until mid-April; I imagine that we wouldn't do a fine-needle biopsy like my surgeon but will do an ultrasound or core-needle biopsy or something like that.

So so far, there's nothing there. That's good news, for now :)

Not at my best today

I felt awful when I woke up; I had a terrible headache and I was nauseous. I think I was migrainy so instead of doing anything productive, I laid down and watched tv. Later on I felt better and did a bit of pattern preparation. I'm going to sew a top out of some striped fabric I bought ages ago - the fabric is primarily pink, yellow, and white and I think it'll be cute.

Tomorrow I need to call my doctor to find out the results from the fine-needle biopsy that my surgeon took 10 a week and a half ago. I very much hope that I don't have more cancer in my breast. I'm a little nervous about making the call tomorrow, of course, but at the same time I'd rather know what's going on. Knowing means that I can deal with it.

My incisions are healing well. There are welts from the bandagey-things that they put on that seem to be everywhere. I can also see new welts forming under the clear dressing I've currently got on the big incision. At least the bruising seems to be going down.

Yesterday was also port-a-cath day

Yesterday wasn't the best day ever. Not only did my friend die, but I had to have my port-a-cath put in. If I'd had a choice, I would have postponed it for a day when I was feeling stronger.

The best part about yesterday was when I was telling the nurse about everything that was going on. She gave me a big hug and when we both had a few minutes, she came and talked to me. She'd been a palliative care nurse and so understood the emotions I was feeling. I am very grateful to her for taking the time to talk to me.

The port insertion isn't all that complicated; the two main steps are to put the catheter part into the jugular vein and to put the reservoir part into a "pocket" that they make under the skin. To do all this they give local freezing.

You may not know this, but local freezing and I do not get along. It hurts like crazy when it goes in and I usually need extra because I metabolize it strangely. So the anaesthetic portion of my adventure was pretty awful and filled with howls and screams. Some would say that I'm a big baby when it comes to local freezing pain, and those some would be right.

Things got better after that. I felt a lot of pressure and things felt weird but they got the port in without any problems. I had to spend four hours in the recovery area but that turned out ok, too. I had a big, big nap :)

I now have a gigantic bunch of padding and tape over the incisions and I'm not allowed to get that area wet, so no shower for me until at least Monday :( The area is fairly tender to the touch and is stiff when I wake up. I'm taking tylenol for the pain and stiffness; I figure there's no point taking Percocet if I don't need to. Home-care nurses are coming in on Monday and again later in the week to change the dressing and make sure things are ok.

I'm going to my bellydancing workshop, although I missed the class at noon because I slept in. My plan is to take it very easy. Tonight is the juggling festival show and I'll be going to that, too.

Tomorrow is my friend's visitation in Oshawa; the funeral is Monday starting at 11am but I can't make it to that because of the home-care nurse coming in. I hope to make it to the visitation tomorrow; Ian's offered to drive me but there are juggling people in town and it would be better if he could spend time with them.

My friend died

My heart is breaking. My friend Pat died last night at about 10pm. She was 42. It's a fact of life that if a person has breast cancer metastases, the mets will almost certainly be the cause of death for that person. Pat started out with bone mets in a lot of bones in June, 2005 and the mets progressed to her liver last year. She'd been on a downward trend for some months but I kept hoping that she would respond to treatment or that there would be some last-minute miracle that would keep her alive.

Pat was a wonderful woman, welcoming newbies to the bcmets mailing list and posting funny, irreverent messages there. Who could forget her love of chocolate, ice cream, and shopping... and her wandering eyebrows?!? :) She was a great peacekeeper and diffused many a hostile situation on the list. She always had words of comfort and listened to many, many people. She was very well-loved.

I'm grateful that I saw her before she died and that she was lucid the times I saw her. I loved her and will miss her very much.

It's been a couple of days....

Sorry I haven't written anything in the last couple of days - I've gone to bed early both days and I've been too tired to write anything. I'm on my way to bed now but I'll give you something new to read :)

I saw my family doctor today and he said that if I had a new recurrence in the same breast, we would need to re-evaluate all of my treatments. Sigh. He also said that the reason I'm sleeping so much is that I'm taking so many painkillers, so we're going to start to increase the fentanyl patch and decrease the oxycontin to twice a day. Hopefully that'll keep the pain down without making me feel too tired.

My friend is still very ill and declining. Apparently her doctor has said that it's a matter of days now before she dies. I'm so sad. I want to visit her but I don't think I can really do that - and it occurred to me that I might be trying to help her in the hopes that the outcome will be different than my dad's was.... that she wouldn't die. But there's nothing I can do to help her and I can't use that to try and block the grief I feel about my dad. I'll email her husband so that he knows that he's not alone, but I can't give any more. This was a very hard realization to come to because I want to do everything I can for my friend and her family.

Tomorrow I have my young women's support group. I think I'm looking forward to that; it's hard to say. I've been spending most of my awake time down in my sewing room, playing with fabrics or sewing, and part of me would rather do that tomorrow night instead of going to a support group. However, I know that I'm in need of support so I'll go. When I get home tomorrow, if I'm not exhausted, I'm sewing. For sure :)

A snow day

I got to sew today! Well, first I slept in until mid-afternoon, and then I sewed. I'm just about finished the dress I'm making; it's a round neck with gathers all around. I had lengthed the sleeves because they were just puffy cap sleeves but they're too long, so I'll shorten them tomorrow. I'm also going to take the dress in a bit at the waist. The dress isn't quite a rectangle but it's close and the little bit of extra shaping at the waist will make it look even better.

Tomorrow I'll sew. Ian has finally bought himself a PS3 game console along with some games and is quite happy to spend all his time playing games :) That suits me fine because I want to sew.

I had wanted to visit my friend in hospital but the roads aren't going to be good enough tomorrow. I hope to go on Thursday this week, maybe. She is slowly deteriorating as her liver is not improving. They basically just have her on fluids and painkillers and she sleeps all the time. I don't know how long this stage lasts but it won't go on forever. When I found out that she was doing so poorly this afternoon I had a big cry - I'm not ready for her to die. She had a good word for almost everyone on the list and she gave the list joy and happiness. Her passing will leave a very big hole that won't be easily filled. I (and many others) will miss her terribly.

Visiting my friend

We went to see my friend today. Actually, we picked up another person from the list and took her, too :)

My friend has done better - she has mets to her liver and it's not working. I suspect that she feels that she is near the end of her journey. This makes me very sad and a little overwhelmed because, quite frankly, my dad's death is quite enough death or end of journey or whatever for now. At the same time, I have a very strong compulsion to reach out to my friend and her family.

I got to meet my friend's husband today so he knows that I'm not some crazy stalker woman :) If my friend is still in hospital this week, I'll make the trip out to sit with her for an afternoon while her husband works. I very much hope that she pulls through, though, and that she's back at home soon.

My new oncologist

I saw my new oncologist today. I love her. She is so, so, so much better than my old oncologist! She is honest and open and willing to tell me things and just everything that I could hope for in an oncologist.

I'm going to see her every 2 months for now, we'll do tumour markers and other bloodwork before those two months, and I'll be going onto the Pamidronate instead of clodronate (the IV form of a bisphosphonate instead of the oral form). Although I have the littlest cataract in my left eye, since the Femara is working enough. And she will do scans every year, starting with this summer.

Her nurse even offered to put me in touch with the social worker. This is awesome!!!

I did find out something that made me quite angry. Apparently the her2/neu test for my recurrence was inconclusive and my old oncologist was going to order a more specific (FISH) test. My old oncologist never told me about this. Her2 status has a lot to do with treatment and is sort of linked with how aggressive a cancer is, and there's a particular chemo (herceptin) that is prescribed to treat it. If my cancer is her2 positive then I'll receive herceptin whenever I start chemo. We won't give it to me until then.

Her2 status is as important an indicator of cancer as the cancer's hormonal status, and my old oncologist didn't tell me that there was anything going on. We don't know if she ordered the additional test or whether she got results. I'm shocked and upset.

I definitely feel like I made the right decision to leave my old oncologist. This new finding cements my feeling that she was keeping things from me and that I couldn't trust her. But I love love love love love my new oncologist and at least I have made the switch!

Continued from yesterday

This fall I've taken on more things than I'd taken on since I was working. Previously, I've had Well-Fit, curling once or twice a week in the winter, and bellydancing in the summer. This fall, I'm curling AND bellydancing (and I was taking swimming lessons, but I've dropped those). I'm busy every weeknight except for Tuesday, and on Wednesdays and Thursdays I have at least two activities back-to-back. So yeah, I guess this is a little much. I sleep about 12-13 hours a day fairly consistently. If I get up early one day, I'll have to sleep in extra another day to get all those hours of sleep.

I didn't think it would be too much for me because I do love doing all of these things, but I put the "too much" line in the wrong place. Still, it's only a few more weeks that I have all of these things to do and then my activities will settle down.

I do sort of wonder whether increasing my anti-depressants is the right thing to do right now. Since I had my big meltdown, I've been working on trying to see the smaller picture in front of me instead of trying to fit the entire overwhelming big picture. This step has helped me to keep things manageable and I've been feeling better as a result.

And yes, I've been crying when other people might not. I don't really see that there's anything weird about that, as crying is one of the ways that I deal with things. I almost always feel better after a good cry. I can't make my life stress-free so I'm going to need to deal with the stress. To me, antidepressants are only one of the tools in my toolkit. I'm hoping to explore some of the other ways of coping with stress over the next while.

Thank you all for your love and words of support! These help me feel protected and safe and ready to try new coping mechanisms.

Ian's home!

Sorry that there was no blog entry yesterday - I'd been awake a long time meeting people and got to pick up Ian from the airport. He's home now :) Tomorrow he's going into his own office.

I enjoyed meeting the people from the list yesterday, although I'll have to say that having breast cancer mets doesn't necessarily ensure that we have anything else in common. I bonded petty well with two of the women and the list owner, but didn't have much of a chance to talk to the other two people. One of the people that I'd especially wanted to meet wasn't able to make it which was too bad.

Oh!!! It looks like someone is buying a laptop bag from me.... and someone I didn't know bought a pair of earrings. How awesome is that? :)

I'm still really, really tired and I expect to go to bed quite early tonight.

Silly fears

I got up early today to drive to Mississauga. I saw my family doctor and the xray he did last week came back normal. That's good news!

I spent the afternoon resting, surfing the internet, and occasionally watching something on tv. It was a wonderfully relaxing afternoon. I'm finding myself quite tired now and will probably be going to bed early tonight. I've got a pretty big day tomorrow: I'm meeting some of the people from my breast cancer metastases mailing list for lunch.

I'm looking forward to meeting everyone tomorrow. At the same time, I'm a little nervous, because all of these people have mets like me (most have more extensive mets than me). I very much want to know them in person instead of just through email... but a small part of me is scared because meeting them in person will make it harder for me to deal with their deaths when they die. I probably wouldn't give this a second thought except someone in my in-person support group did just die.

I know that that fear is tremendously selfish. It's ridiculous to back away from meeting wonderful people just because it'll be harder on me when they die. It is silly to deprive myself of other people - both my life and their lives will be richer for us having known each other in person. Everybody dies, and so everyone I know will die (some may even die before I do)... and I wouldn't trade the people in my life for anything. I'd rather have known people well when they die than to have backed away from them because I was selfish and afraid.

This has given me insight into some people's reactions to this kind of disease, and that's a good thing.

OH!!!!! It looks like someone is commissioning a laptop bag from me. I'm quite excited :)

Mourning twice over

I am so tired of cancer.

When I finished my blog last night I checked my mail and found out that one of my young women's support group members had died. Her funeral is on Saturday and we will try to attend. She had had breast cancer that had metastasized (spread) to her bones, liver, and brain. For the last few months she had been bed-ridden as one of the brain tumours made her paralyzed. She leaves behind 3 little kids (the youngest is about 2 1/2 years old - she was first diagnosed with breast cancer while pregnant with the littlest one) and her husband. He's been pretty well out of work for two years now. What will happen to them? I'm so sad for the family.

After I finished reading about this, I went to one of my online breast cancer support groups and found out that one of the members there had died. She had bone and liver mets and she'd only had them for five months, since May, 2007. It all happened so fast - her liver started to fail a few weeks ago and then she just died. She didn't have any children and she leaves behind her husband. He's heartbroken.

Both of these women were about my age. My heart is aching for their families and friends - it's so not fair that these women died so young. Last night I cried and cried and cried; I will miss them. They were both wonderful women who went out of their way to help people whenever they could; they were honest, loving, and patient. It was like each of them had a light that just shone around them - the world is a darker place now that they're gone. :(

Oncologist's appointment today

I saw my oncologist today. It turns out that my tumour markers have gone down, to 41.3 from 46.2. So they've done this: 57.8 (August, 2006) -> 48.0 (October, 2006) -> 39.6 -> 41.4 -> 46.2 -> 41.3 (October, 2007). We think it's safe to say that my tumour markers are oscillating between 39 and 48, and that's just what is normal for me right now. This is really good news; normal for this particular marker is 38, and I'm just about normal. Well, in this sense, anyways :)

What this also means is that we can continue to look at this tumour marker, and if it starts heading out of this normal range we know that there's something going on.

I also talked to my oncologist about the fact that I still feel that I can't relate to her and have asked for a referral to another oncologist at this cancer centre. She had no problem with it at all and will go ahead and refer me to someone else. Whew!!!! I talked to the nurse afterwards (not the usual nurse as she is on vacation) and she said that switching doctors there is not at all uncommon. I had been quite worried about how this would go - I didn't want to burn my bridges, as it were/ I think I handled it very well and professionally and I was quite impressed with me :) I should have an appointment with a new doctor in four to six weeks.

I've been uncomfortable with my oncologist and nurse since the beginning. I've tried hard to change this and to be comfortable with this oncologist/nurse pair, but in the end I just couldn't do it. During my recent liver mets scare, I realized that there was no way that I would put myself in the hands of my current oncologist - if I couldn't have seen another oncologist right away I would have gone back to my old oncologist in Credit Valley.

These feelings were so strong that I knew that I had to ask for the referral now while things are quiet. It's very important that I be completely at ease with my doctors because I have to trust them with my life. Hopefully I won't get a doctor that I'm LESS comfortable with :)

No mets!!!!

That's right, I have no liver mets!!!! The ultrasound was completely clear and showed no inflammation, and my liver function numbers are well within normal. YAY!!!!! We're very relieved :)

My doctor thinks that my problem might be stomach-related and so is putting me back on Nexium. I'll continue to take the Zofran for nausea.

My doctor also gave us tips on how to talk to my oncologist about getting a referral to another oncologist in the same cancer centre. Ian gets to open up the discussion, which he's not at all happy about, since he doesn't like conflict. If you didn't know, I'm not comfortable with my current oncologist and I want a new one. I've heard good things about a couple of other oncologists at the cancer centre and so I'll ask for a referral to one of those doctors.

How much I've changed

I went to my Spirituality and Healing group this afternoon for the first time in three weeks. We talked about letting go of things - like anger, or being control-freaky, or whatever. I told them about how, when I was working, I could be quite mean and callous; that I didn't give the people I worked with enough credit for being themselves and for having their own talents, and that I expected everything to be done my way. I've changed a lot in the last year and a half and I know that I'm more patient, compassionate, and forgiving than I was before.

Anyways, as I was saying all this today it struck me that one of the main reasons that I want to go back to work is to show people just how much I've changed. I guess I want to show other people that I'm not the person that I was and that I can still get as much done and be as efficient while also being a better person. One person in particular bore the brunt of that and I've apologized to that person for the way I behaved.... and I think I also want to apologize to other people as well, you know? But the only way I can really apologize is by showing people that I'm different. I can SAY I'm different, but, well, saying so doesn't make it so.

I don't expect that I'll work again. If it turns out that I don't have liver mets, there is a chance that I might get to work. If I have liver mets, well, I won't be working again.

I'll let you all know how things went after the appointment tomorrow. Ian and I have decided that we're hoping that I have some kind of liver infection and not liver mets.

Test results on Friday

I have a doctor's appointment on Friday and I should get my liver ultrasound and liver function test results then. It was going to take 4-5 days to get the ultrasound results so they should be ready on Friday. The liver function tests should have been available on Monday so I'll definitely get those as well. I'm quite nervous about the appointment, because I'm scared that I have liver mets. However, I've talked to some people who have had similar symptoms as me but who had something other than liver mets - so it's possible that there's something else wrong with me. Wouldn't that be awesome?

I've been quite nauseous with a fair amount of pain in my liver today. Sigh. I just want the pain and nausea to go away - I feel like crap. Hopefully I'll feel better tomorrow.

Tests today

I was able to get in to have the abdominal ultrasound this morning. They squeezed me in for 9:30am, and the whole procedure took about a half hour. She took a lot of pictures of my liver and did quite a few measurements - some of those are things like pancreas and gallbladder and all that. She said that my doctor would get the results in four or five days.

The bloodwork to check my liver function took no time at all after waiting for about a half hour. The technician asked why I was doing these tests and I said that we were checking for liver mets. She asked what kind of cancer I had, and I said that I had had breast cancer and now I have mets to my bones. When I said that, she looked so sad. After she finished drawing the blood, she squeezed my hand. Surprisingly, that made me feel better.

So I won't know anything until late next week. There is a small chance that I don't have liver mets; I could have some sort of infection or my liver may have decided to stop processing all of the drugs I take. Or I could be living in an episode of House and I have some rare disease. :)

Yes, I'm scared, but I'm ok. I'm still doing things I like to do and I'm trying to keep myself happy (ie distracted).

I wasn't hoping for this

Sorry that there was no blog entry yesterday; I'd fallen asleep at 8:30pm and went straight up to bed at 11pm to wake at 10am this morning. I'm less tired today :)

I did see my family doctor today and talked to him about my nausea, pain in the upper right quadrant of my abdomen, and tiredness. He had me lie flat and then he checked where the edges of the liver were. After that, he applied gentle pressure on different parts. The gentle pressure caused some pain - not, like, excruciating pain, but pain nonetheless. It turns out that my liver is swollen. He is pretty sure that I have liver mets. Sigh.

He's sending me for a liver ultrasound first thing tomorrow - I don't have an appointment but I'm to go to the clinic and beg for one. My doctor is also asking for bloodwork that will give us an idea about how well the liver is functioning right now. I kept telling him that I was seeing my oncologist the week after next but he wanted to do this all on his own. Yes, I know I had a scan in late June, but I think my mets (if that's what's there) were just baby-sized then and couldn't be seen at that time with that technology.

He also gave me prescriptions for Zofran for the nausea and Ativan (lorazepam) for the anxiety. I have been feeling pretty anxious for a while as I have been worried about the pain and achiness in my abdomen around my liver.

I won't lie: I'm quite scared about this whole thing. Liver mets are more serious than bone mets and that scares the crap out of me..... for now, though, I'll take this one step at a time.

Early Thanksgiving dinner

We went to Ian's parent's house for Thanksgiving today and got to eat very yummy turkey and pumpkin pie (as well as stuffing, potatoes, vegetables, and other sides). We're both quite full after gobbling all of that food. :)

You know how we're trying to lose weight? Well, I've lost 4 pounds in the last week but the software indicates that I'm only 1500 calories under what I should be eating to lose 16 pounds in a year. I don't feel hungry at all - and I occasionally even feel stuffed - but the weight seems to be melting off just now. Not that I mind :) I would like it come off just a little bit more slowly, though.

I'm very tired these days, partly because I haven't been sleeping well. It takes me a couple of hours to get fully to sleep and until then, I sleep very lightly and am awake a lot. Part of this is the pain which is up a bit. Part of this is also that I'm worrying, and I should take some anti-anxiety meds - but the only thing I have is the clonazepam which knocks me out completely. I'll go and see my doctor this week to see if he'll give me something milder like Ativan.

Why am I worried? Well, my tumour markers were up ever so slightly the last two times we took them, and I go in to do the bloodwork on Tuesday. I've been feeling a bit nauseous quite a lot lately and I've got funny aches on my right abdomen just behind and below the rib cage. So I'm worried - although I'm sure that I've got no real reason to be and that I'm just being a worrywart. Realistically, even if I have got a reason to worry, worrying won't do any good at all because it won't change the outcome of the test. I should be practicing belly-breathing or something instead of worrying :)

Have a great Thanksgiving, everyone!

Some improvements

I think I finally got caught up in sleep today. I slept until 12:30pm today with only a couple of awake hours between then and last night at about 11pm. Whew!

Interestingly, I'm taking painkillers less often than usual. Yesterday I took painkillers at about 9:30am and didn't take them again until after Well-fit, around 7pm. I did take them just before bed last night and then when I woke up, and then not again until the evening. I'd been taking them every 5 or 6 hours, before. I'd love it if I could take less painkillers with no adverse effects :) We'll see how things go over the next few days; if this trend continues I'll actually start trying to lower each dose.

Tumour marker results and doctor's appointment

I got my tumour marker results today. In June, they were 41.3, having gone up 1.8 over t