Pain settling down

The pain is getting better - or at least, I can pretty well keep it under control with the Tramacet. That's good, because the oncologist can't call in a new prescription; they can only call in refills of existing prescriptions, which makes sense. The nurse associated with my oncologist also said that the oncologist won't see me just for pain. She said that I should go to my family doctor if I have trouble with pain. Unfortunately, he's on vacation this week, although I am seeing him Tuesday. I guess I dropped the ball on this (was it entirely my ball to drop?).

I took the dressing off today, too. There is a line of blisters along the top of the tape. I'm sensitive to adhesives, and they didn't use paper tape, but I've still never seen that kind of reaction before. It and the insicion seem to be healing ok, though. I'll keep an eye on them over the next few days.

Sternal biopsies aren't fun

So having a biopsy sucks. We got there at 7am, where they did the pre-op questions and bloodwork and stuff. When we finally got started at about 8:45am, they had to give me an IV. Well, it was freezy cold everywhere in the hospital, and I don't have good veins anyways, so we had a lot of trouble (and pain) getting the IV set up. Fortunately, she only had to try the one location. I don't think I could have stood trying another location like that.

Once we got the IV in, they gave me a sedative and painkiller. They checked the location of the lesions. When they were satisfied, they gave me lots of freezing in the chest. Before they gave it to me, they said, "oh, it's just like when you go to the dentist. It'll sting a bit". What is this "sting" that they're talking about? It hurts a lot a lot a lot to get freezing when I go to the dentist, too :)

When I was all numb, they stuck a long, thin, hollow rod in my chest and wheeled me in and out of the CT machine to check positioning for the samples. When the position was right, they put a core needle through the rod and clipped off a sample. They took three or four samples of the large lesion on the right, and it hurt a lot when they did two of them. I'm hoping that this pain this means that they got a good sample of the lesion.

I had to stay for another 3 hours afterwards. As a bone, my sternum didn't take up the freezing, and so started to hurt about 20 minutes after we finished. This isn't a surprise, as they were applying some serious pressure on it (at one point, the doctor said, "I forgot how hard a sternum is"), and, well, they were taking pieces out of it. They gave me Percocet, which helped. I've been taking the Percocet every 4 hours, and expect to do that for the rest of today and tomorrow. Unfortunately, they couldn't get the oncologist to call in a prescription for more Percocet because that doctor has never given me that drug before (I'm using leftovers from the surgery in May). I'll definitely need more, and so I'll have to try to work something out tomorrow by talking to them myself. Of course it's possible that the pain will have diminished by tomorrow.

Really, all I've done since I got home was watch tv and sleep :) Ian set up a nice bed for me on the couch, and so I can just watch tv and doze off as I please. He's been watching over me, making sure that I'm doing ok. My plan for the rest of the night is just to continue dozing and watching tv, and hopefully I'll feel better tomorrow.

Appointment today and biopsy tomorrow

I could have had my ovaries removed on Friday, September 1. Of course, given the circumstances, we're going to wait to schedule the surgery until after we get the biopsy results :) The doctor said that he would be able to fit me in within two weeks of those results, and if there wasn't room in the schedule that he would do the surgery after hours. The surgery will be laparoscopic, which means that I'll only have a few small incisions and a shorter recovery time. It'll be day surgery as well, so I'll go home (well, to Mississauga) that day. Yay!

How awesome is all that? I've consistently had this kind of experience with the doctors in Oakville/Mississauga. You can see why, if I'm used to this kind of thing, I feel that the pace at my current oncologist and local hospital is so achingly slow.

Tomorrow they biopsy my sternum. They called today and said that I can expect to spend pretty well all day at the hospital, so I should pack a lunch (they don't serve lunch) and bring all my medications. I guess they will want to monitor me after the actual biopsy to make sure that there are no complications. Plus they'll be giving me a sedative and stuff through the actual biopsy. I'm a bit nervous - I don't like hospitals all that much, and I'm still worried about the pain. Fortunately this will all be over soon. If the pain is bad, well, I'll just get more painkillers. There must be a way to do that by calling the oncologist :)

Rescheduled surgeon appointment

I got a call from the gynecological surgeon (who will be removing my ovaries)'s office today. Apparently my family doctor had met the specialist at the hospital last week, and they decided to have me come in much earlier. Like today.

Unfortunately, my family doctor's office didn't call me with the new appointment time, and he's on vacation now and the office is closed, and so I didn't know that I was supposed to go in today. So my appointment is now tomorrow instead of September 25. That's ok as long as we book the surgery for after I get the biopsy results. Now I just have to get all my questions ready a month earlier than I'd originally planned :)

Sleep and even more buskers

Looks like my plan yesterday paid off - I slept for 13 hours straight through last night. I'd paddled on the left and I took the maximum amount of Tramacet possible as well (metered throughout the day, of course). The only pain I had and currently have is muscle stiffness from paddling with poor posture :)

So once I finally got up, we went back to the Busker festival again. This time, we saw Sublimit, which is a pair of Japanese acrobats, and Dana & His Performing Dog Lacey. Sublimit was pretty good - their acrobatics were amazing. They were hampered somewhat by the fact that they don't speak much English, but they managed to communicate with the audience nonetheless.

Dana & His Performing Dog Lacey were a bit disappointing. It was definitely a kid's show that unfortunately didn't have much of anything for adults. Lacey was cute in a small scruffy dog sort of way - she jumps through a hoop.

Afterwards, we watched the vaudeville show, which is a show put on by a bunch of performers in the carnival. It was entertaining. The best part was the Handsome Little Devils doing a hat routine. They're very talented, and were probably the best act in the festival this year. The vaudeville show marked the end of the carnival, so we'll have to find something else to do with our time over the next few days :)

Port Dover followed by buskers

The Silvermasters placed 8th out of 19 teams at Port Dover today. It didn't rain!!! It wasn't too hot, although it was a little humid. Still, we were all grateful not to be soaked all day.

Things I liked about the festival:

• People were friendly.
• It was fun.
• The bands were pretty good.
• Many people like the fish fry that they have in the evening.
• They ran mostly on time.
• The results and placements were available really quickly.
• There were lots of portalets with hand washing stations.
  

Things I didn't like:

• There was an issue with the garbages. The organizers said that since the park was the responsibility of the Lion's club, they were the ones to put out garbages. And that's supposed to excuse the fact that they didn't have garbages by the portalet banks? Or that the garbages, once they arrived, were never emptied? It's wasp season, and full garbages attract a lot of wasps.
• The lanes were completely biased and the timing wasn't particularly accurate.
• The drinking on our team bothered me today. Many people on our team were camping there tonight, even though it's supposed to pour down rain. Therefore, they drank all day. Some drank some kind of kool-aid/vodka mix, some drank homebrew beer, and one or two actually drank from the beer tent. Those drinking the kool-aid/vodka mix were drinking pretty steadily and heavily all day. I get that people like to drink, and that a beer or two during a sporting activity day is fun for some people - I just disapprove when people are drinking heavily during a physically demanding sporting day on water. After the races finished, one of the team members brought out the jello shooters (she made about 200) and most of the team started in on those. We left at that point.
  

I liked the event. I think I would go back, but not with our current team.

After we got home we went to the Busker festival again. We saw Flyin' Bob and the Handsome Little Devils. Flyin' Bob was ok. The Handsome Little Devils were awesome!! They did a vaudeville-type act that was fantastic, with great timing and talent. Their club passing was crisp and fast and good. Their fire torch passing while on pogo sticks (which also shot out flames) was cool. Their bowling ball/chainsaw/juggling ball juggle was pretty good, too. This troupe is there tomorrow afternoon, too - for those of you in the Waterloo region, I'd recommend checking them out.

Beautiful Simcoe

Since we're paddling in Port Dover tomorrow (most likely in the rain) and since we're lazy and didn't feel like driving down there tomorrow morning, we decided to spend the night in Simcoe, ON. It's a cute small Ontario town.

We spent the first hour or so looking for somewhere to eat. Our first choice was closed down, as apparently the lease expired. We went downtown and parked in a not-so-good area (the strip club was about half a block away) and walked around. One place claimed to be "good food", but we couldn't tell what kind of food they served. And anyway - how can we be sure it really does have good food? Their saying so doesn't make it so :)

Most of the other places looked like pubs that happened to serve food. Many had people standing around outside smoking - since Ontario's no-smoking-in-workplaces law came into effect, that's a more familiar sight - and we decided that we didn't want to eat food in a place like that. The only other place we considered had a decent menu (it was a Thai place, of sorts), but the perfumy cleaning chemical smell in the lobby made me itch and put us both off. So we ended up at Kelsey's, which while not great is at least familiar.

I'm not especially looking forward to the event tomorrow. It's starting later than most events. They don't want to finish too early since they have a fish fry at 6:30pm and they want people to stick around. It's supposed to rain tomorrow, though, and there's a possibility of thundershowers. If thundershowers do appear, the event will be delayed or possibly cancelled.

And remember how I said that we had extra people at the event, so I could probably sit out one of the races? Ummm, I guess our captain decided to have those extra people not come with us, so I probably won't get to sit out. At least I'll be on the left (albeit in stroke position). My hope is just to get through the day tomorrow.

Buskers

After dragonboat practice we went to the Waterloo Busker Carnival. We were early enough to see a couple of acts.

The first one was Exsulis, the Fire Show. He eats fire, transfers fire from one place to another using his head and hands, and breathes fire - I didn't think that he could do such a long show doing basically only those three things, but he did. Of course he had some help from the audience. At one point, he asked some audience members to feed him the fire. That would have been a hard trick. The part Ian liked the best was when he was building up to breathing fire, he asked if anyone was from Alberta. Ian made my hand go up higher, and the guy singled me out for a "breathing fire is dumb because it's dumb" speech in a redneck voice :) The strangest thing about this performance was the social message. He says that he's doing this to get his message - which basically boils down to "don't trust mass media - find your own truth and justice" and "love yourself because the world's problems can be solved if everyone loves themselves enough to love their neighbour" - out to people. Those are good messages, but it was a little weird hearing them at a busker festival.

We skipped the Dan Show, mainly because he was going to do contortions and I don't like those (I don't like it when they dislocate their shoulders). We also skipped Svetlana Transylvania because she didn't seem that funny.

We caught the end of the Arizona Jones show. He had a whip, which is always compelling :) He did a thing where he went up a 4.3 metre pole, lit a whip on fire, and cracked it to put it out. The funniest part was that the audience member that he'd recruited to throw the torch up to him couldn't actually throw. Her misses (and his responses and contortions to try to catch the torch) had us in stitches :)

We'll try to go back Saturday night after paddling. Tomorrow we're going to Simcoe so that we don't have to drive too far on Saturday, so we'll miss the acts tomorrow.

Fall fashion magazines

The September issues of the fashion magazines are out! The September issues showcase the fall fashion trends. The magazines are really thick with lots of ads from a variety of designers. They also have tips on how to wear the latest trends as well as compilations of the trends. I look forward to the September issues all year :)

One thing I'm pleased with is that the magazines have way fewer perfume inserts than they used to. In the five magazines I bought today, there was exactly one perfume insert. That number is way down from years past, when there were three or four per magazine. I'm noticing as well that there are more ads for shoes and jewelry than there used to be. Not that I mind, given that I love shoes as much as I do :)

For those who are interested, the trends this season for women are menswear, dark skinny jeans, leggings, wide slouchy pants, big poufy tops, layering, tartans, glen checks/houndstooth, black and white, dresses, miniskirts, platform shoes, stiletto heeled shoes, skinny boots, and gold everything. There's not a lot that I can really wear this season - big tops over skinny bottoms are not a good look for me (and neither are skinny tops over big bottoms)... and layering just makes me look bigger. Oh well. There will be other seasons.

Support groups

I had my last Tools for Healing group today. Overall, I'd say that it was a good experience. I think I learned a thing or two there, which made it worthwhile. We focused a lot on relaxation and meditation exercises - while I've been exposed to these sorts of things before, I hadn't focused this much on them. I also liked the support group aspect. I would have liked it better if there had been more people that had an advanced cancer or a recurrence (the issues I'm facing are a little different than those faced by someone with a first-time early-stage cancer). However, I think it was still valuable.

I've signed up for another group that'll start on September 12 that's called Spirituality and Healing. It's the follow-up to this session, and I've signed up in large part because I really like the facilitator. She led one of the weeks of the Tools for Healing group, and I very much liked her style.

I've also signed up for the young women's support group. It meets monthly again starting September 20. I like that group because the people are all young and many of them have advanced cancers. There're one or two that have had their ovaries out (which I'll be having done), so I can look to them for help in managing the side effects. Also, they're young, which means that their issues are similar to mine in ways that older people's might not be.

Biopsy scheduled

I'll be having a CT-guided biopsy on August 30. It's scheduled for 8:30am that day, and I have to be there at 7am. I think they'll be putting in an IV and giving me a sedative and stuff.

I have an appointment to get the results on September 14 at 3:20pm.

I feel pretty awful today - I spent every spare second asleep, which hasn't happened for a while. I didn't even go paddling because I was so tired. Now it's almost bedtime again, even though I just woke up a little over an hour ago.

Paddling aftermath

Hmmmmm, maybe paddling in an event isn't the best idea ever. I had a lot of pain last night that prevented me from sleeping (I ended up having to break out the Percocet, which is something I really don't like doing). I also had quite a bit of pain today. It's really hard to get the pain under control once it's broken away from the painkillers. I'm starting to get the pain back under wraps now, though.

The team is going to Port Dover next weekend. I'm still going to go and paddle - even though the pain was bad, I'm not yet willing to give up the things I enjoy doing. I think we have extra people going to the event, though, and so I should be able to sit out one of the races. That will help a lot. Also, I suspect I'll be paddling on the left (I was on the right this weekend), so it may be that I don't get as much pain then. Paddling is a very asymmetrical motion that uses different muscles on each side of the body depending on which side of the boat you're on.

Given all that pain, we took it easy today. We watched all of the reality shows that we'd recorded while Ian was away. So now we know who won Hell's Kitchen and So You Think You Can Dance, and we know who was eliminated on Rock Star: Supernova.

London

The Silvermasters came in 10th out of 40 teams in the London dragonboat festival today. It didn't rain as much as it did in St. Catharines, but it still rained and drizzled all day. I guess when you're participating in a water sport, you can't complain when you get wet from rain :) Fortunately, it wasn't too cold, and we had our fleeces and rain gear. Another thing of note was that there was a blue-green algae bloom (aka "pond scum") in the lake. The lake was actually closed for swimming, which makes you wonder how safe it was to get drenched in it. It also smelled something awful, and made anything white turn green.

Now, for the lists.... here are things I liked about the festival:

• They were on time almost all day.
• They had the results from each race posted very quickly.
• The awards ceremony was quite short. Last year, it dragged on for about an hour and a half, so this ceremony was a pleasant surprise.
• There was shelter from the rain.
• There were flush toilets. When all of them became clogged in the ladies room (apparently some people have trouble flushing slow toilets), they fixed them quite quickly.

And here are the things I didn't like:

• There were no volunteers directing traffic and parking. As a result, parking was somewhat chaotic.
• One of the volunteers on the docks was very, very rude to our caller (the person at the front of the boat behind the drum). That volunteer wasn't there afterwards, though, so I guess that's ok.
  
• They didn't disqualify the team that didn't have enough women. The rules stated that each team requires at least 8 women, and this team only had 4. Worse, they won a division and received their prize.
• There were no speakers in the shelter, so we couldn't hear what was going on while we were in there. Fortunately, there wsn't all that much happening at that time.
  
• There were portalets on the way to the docks, and they were never emptied or replenished.
• There were no recycling facilities.

Overall, the festival was good. If the water didn't have the algae bloom, it would have been fantastic paddling. I'd definitely go back to this festival, and I'd recommend it to others.

Ian's home!

Ian arrived home tonight at about 9pm. It's really good to see him :)

I spent the afternoon getting ready to paddle tomorrow in London. We have to be there at 8am, and so we'll be leaving here at around 6:30am. The only thing left to do is to pack up the cooler. The food is all ready to go in, but we won't actually fill the cooler until tomorrow morning. Everything else is packed and in the car. That'll make tomorrow morning easier.

We'll spend the rest of the evening (what little is left of it) watching the tv shows that we've missed. Ian slept on the plane, so we'll probably get to bed a little bit later than we otherwise would. This should give us time to get through one or two things.

Biopsy thoughts

I saw my family doctor today, and apparently my previous oncologist would not do a biopsy since the bone lesions are almost certainly breast cancer anyways. There was something about the previous radiation, too - either that I'd have to go there or that they'd have to get the records or something to find out what the actual radiation field was. My family doctor was happy that the biopsy is being scheduled, though, because it's clearly something that I want. So if I want it, he wants me to have it so that I feel better. He also said that if it came back inconclusive that they'd open me up to get a surgical biopsy of the bone under a general anaesthetic. I don't really want to have to do that.

So if many of the specialists are saying that the biopsy is unnecessary, why am I still going through with this? I don't like pain, and I know it's going to hurt like crazy, and it might not even give a definitive result. And even if it does give a definitive result, it's almost certainly going to be that the lesions are breast cancer, which is what everyone thinks they are anyway. Part of me just wants to back away from the biopsy and go ahead with the other treatments.

Except that there's this still, small voice inside me that is telling me to do the biopsy. This "voice" doesn't speak, exactly, but it makes different options feel different ways when I clear my mind and say each one. So the right thing to do has a particular resonance to it and I'm drawn to that, and something that's wrong is discordant and I feel like backing away from it. Sometimes things will just pop into my head and they'll have a good resonance to them, and I know that it's time to do those things. I know this sounds crazy, but I'm not crazy (weird, yes; strange, yes; but not crazy) :) This voice has been unfailingly right - it has always led me down the best path for me except when I've chosen to ignore it.... and those choices have always turned out quite badly. I know enough to do what this voice tells me, but I usually don't know why I'm supposed to do that thing until after it's done.

However, I've never really had a conflict between this voice and logic from other people before, and I'm finding that conflict very difficult to deal with. Maybe I just need the certainty that the biopsy (or surgical biopsy) will ultimately provide? That would certainly fit into the logical structure that's been created here. Either way, I'm going through with the biopsy, as scared as I am. I'm really glad that I'm not working right now, because all of this conflict and fear is making me very stressed, impatient, and cranky. I know that I'd be a nightmare to work with right now... it's better that I not inflict myself on the people I work with when I'm like this. Not to mention the fact that I wouldn't have a hope of getting myself de-stressed :)

My doctor has referred me to a specialist for the oophorectomy (removing my ovaries). I see that doctor on September 25 for the initial consult. That should give us plenty of time to get the results. Things are definitely moving forward now.

Today's oncology appointment

The medical oncologist is indeed nice. She's nice in a slightly saccharine and ever-so-slightly patronizing way. I guess there are people out there that like that sort of thing... I just happen to be not one of those people. One thing I did like about her was that she paused so that I could write down the names of the medications we discussed, and she made sure that I could spell them. However, I felt that the discussion was led less by her and more by me and Ian's mom (who came with me because Ian is away). I'm sure the doctor did that so that we would only get as much information as we can handle. She just doesn't yet know that I want to know EVERYTHING :)

We started off by talking about the CT scan results. She said that we couldn't be sure that it was cancer, although if it was breast cancer it wouldn't matter because the treatment would be exactly the same, and that we could do additional tests if we wanted, and would I be comfortable doing an MRI? What?!? I got her round to the idea that yes, I firmly believe that the thing in my sternum is cancer, based on the gradually increasing pain and the CT report that I've read. And that it was my understanding that the question was whether or not the cancer in my sternum was breast cancer or a radiation induced cancer.

She did say that it's highly unlikely that it's a radiation induced cancer, which I know to be true. I'll feel a lot more comfortable knowing that we have as much knowledge as possible before we start treatment, though. She agreed that we could go that route, and so we are going to do a biopsy. She said it would be up to a couple of weeks to get in and then they'd have the results within 10 days of the biopsy date. There is about a 15% chance that the results from the biopsy will be inconclusive, and of course there is some risk associated with the biopsy. Let's hope that the biopsy goes smoothly and that it gives conclusive results. Ummm, we're not doing an MRI :)

If the thing in my sternum is breast cancer, then we'll remove my ovaries. It might take a while to get in to surgery, as my surgeon apparently doesn't do this surgery and so I'll need a referral to someone else. If it does take too long to get in to surgery, we'll start me on the injections to prevent my ovaries from functioning. That way, they can start me on aromatase inhibitors 4 weeks after the first injection. She said that I would be able to take some herbal supplements (black cohosh, evening primrose oil, and vitamin E) and they have some prescription medications (clonidine and effexor) that will help to minimize the menopausal symptoms that I will experience in this case. We would also start me right away on some bone-building stuff (clodronate or pamidronate if I don't tolerate the clodronate) in addition to calcium and vitamin D, because the aromatase inhibitors and menopause will weaken my bones. We will not do a mastectomy.

If the thing in my sternum is bone cancer, then we won't do any of the stuff above, but will only treat the bone cancer. She said that the reason that we would do this is that there is no point in giving a treatment designed to prolong my life by years and years and years if the new cancer would catch up to me in a few years. This makes some sense.

We did a baseline blood test including some tumour markers; these markers can be used to determine whether cancer is actively growing. They're not perfect, these markers, but they're better than nothing. She also said that at the moment, there are no clinical trials that would apply to me, so I'm just going to get standard treatment.

And that's it. I hope I remembered to ask her everything.

Appointment tomorrow

I have my medical oncology appointment tomorrow. I'm a little bit nervous. I've never met this doctor before - all I know is that everyone who knows her says that she's very nice. No one has said that she's very good, or very competent, or very thorough, or effective, or any of the other characteristics I might look for in a specialist. "Nice" is not something I care about in a specialist - my surgeon, for example, is not nice. But this "not niceness" is what makes him effective. So I'm hoping that this oncologist is not just nice, but also effective.

On the other hand, I care a bit more whether or not the nurse is nice. I can live with a not nice nurse, but one that's nice is, well, a bit better (provided we don't sacrifice effectiveness for niceness). I have talked to the nurse a couple of times. I had seen a temporary medical oncologist back in June, and the nurse that time told me to contact this nurse when I had questions. I haven't gotten a good vibe from this nurse - her voice has been impatient and "sigh-y" when she's talked to me. I've had the sense that she feels that she's wasting her time talking to me, and that she's only talking to me because she has to return all calls. And that she's not going to go out of her way to help me (unlike the radiation oncology nurse, who is very nice and very effective - she has definitely gone out of her way for me). I'm hoping that this is all because this nurse hasn't met me before, or that I've caught her on a couple of bad days, or that there's some political undertone that I'm not completely getting that's going on here.

So anyways, I'm going in with an open mind tomorrow, because it's entirely possible that there's something else going on that has nothing to do with me. I have a list of questions and areas for discussion I'd like to cover. Hopefully we'll have time to go over everything. I've waited so long to see this doctor that I'm worried that I'll wait a long time to see her again, and so I want to be sure that we've covered the ground immediately before us.

A relaxing day

I spent most of the day reading and napping. I didn't really feel like doing too much after the last few days, and so I took it easy.

I did paddle today. If I go to the London event, I'll be paddling in right stroke. I expect that I'll be able to go, but I don't want to make a commitment until after my doctor's appointments this week. It was good to get out and paddle - I actually felt like I did an ok job :)

I also watched the Animatrix tonight. It's supposed to be an animated prequel to the Matrix series, but only 2 of the shorts make sense if you haven't seen the movies. The other 7 require knowledge of the movies. If you have seen the movies, they're well worth seeing.

Home again

I took Ian to the airport yesterday and then went back up to the cottage. It was quite a lot of fun - we went tubing again, and it was WAY more fun than the last time. The water was much calmer, and so my head didn't get bounced around so much. My arms got really tired from hanging on, though :) I got to go sideways across the wake of the boat as it made really sharp turns, and that was a lot of fun. The water wasn't calm enough to go kneeboarding, so I'll have to try that some other time.

We also went sailing again. There wasn't very much wind, but that was good, because one person on the sailboat had never been on one before and has a fear of deep water. I'm so proud of her for going on the sailboat! She also jumped off the sailboat before we reached the shore, and I'm really, really proud of her for that, too. It turns out that it was pretty shallow there, but it's a huge accomplishment to go into the water at all in that situation.

They took the jet boat out later for a cruise and unfortunately picked up a hat in the intake pipe. They took a long time to come back, and that was pretty well the end of the boating fun for this week. I did spend some time afterwards while dinner was being prepared playing Scrabble with some friends. I was doing well until the 3 1/2 year old decided to "help" me :) I think we lost that game, but he had a lot of fun playing.

This morning we cleaned up the cottage. The 3 1/2 year old was responsible for spraying the Windex - he's pretty good at it. The 1 1/2 year old walked along the length of the built-in vacuum hose, making sure that his right foot stayed on the right side and the left stayed on the left. That seemed to entertain him quite a bit. I wound up taking the leftovers and a bunch of food home. Ian's not here this week, and I don't cook, so this means that I can now eat a meal or two without having to do too much :)

As fun and relaxing as this week has been, it's good to be home. I'm not going to do much today, of course, but it's still nice to kick back surrounded by my own stuff.

Rebooked appointment

We spent the morning at the cottage and then went home, because Ian is flying out to California tomorrow for a conference. When we got home, there was a message on the machine saying that my oncology appointment scheduled for Tuesday had to be moved due to chemo patients and was now scheduled for August 29. That's two weeks after the appointment was originally scheduled.

Well, I freaked. I was very upset. Of course I called them. I didn't try to hide the fact that I was upset (ok, almost in tears - tears of frustration, but tears nonetheless). I guess the doctor I saw on Wednesday hadn't put the results in my file, and so the people who book the appointments didn't know that things were now much more serious than they were before. The person I talked to confirmed my statements with the doctor I saw this week, and that that doctor had
talked to the doctor I'm supposed to see, and that I should see this doctor sooner rather than later. So they told me they'd get back to me, and that they'd do something. The people I talked to were all very nice and calming and everything.

The appointment is now scheduled for this coming Wednesday. That's much better.

I understand that they're busy, and I understand that they're short-staffed because of a doctor shortage and because it's summer. I'm having trouble understanding how these situations can keep happening. If I wasn't the demanding squeaky wheel that I am, what kind of care would I receive? It actually matters how long things take now, and they don't seem to have the infrastructure in place to correctly triage and prioritize their patients. The fact that everyone is very nice does not excuse or make up for the fact that they don't have their collective acts together. Sigh.

Family doctor and water fun

My family doctor was not impressed with the idea that we would wait to do a biopsy. He's going to get a second opinion from my previous oncologist in the next week. He's also going to see me after I see the medical oncologist next week. It's entirely possible that the medical oncologist will propose a different treatment plan.

He also gave me some new pain medication to try (Tramacet), since while the T3s work, they are a narcotic and I don't like those. Also, I was terribly, terribly nauseous this morning. I have discovered that I'm really not all that fond of being nauseous :) So far, the Tramacet is working. I don't really feel out of it or anything, and the pain seems to be lessened even over the T3s.

When we got back to the cottage, I went on a sailboat. I'd never been on a sailboat before, and so this was really, really fun. I was told to just sit there and move when I was told to do so, so that's exactly what I did. The wind was pretty high and the water was choppy, which meant that the boat dipped into the troughs and crested the waves. We got soaked because the water kept coming over the top :) I enjoyed it very much, even though I didn't do any real sailing. Maybe one day I'll get a chance to learn to sail.

We also went tubing this afternoon. That's where a big tube is pulled behind a boat (in this case, it was pulled behind a jet boat). I'd never done this before, either. The water was still choppy, and I think that I would have enjoyed it more had I been in calmer water. I want to try it again, though. If they go kneeboarding tomorrow, then I want to try that, too.

Oncology appointment

So the oncologist basically gave me the results that I already knew. It was kind of funny, though - I'd mentioned that we couldn't be absolutely certain that the lesions are breast cancer, even though it is most likely that they are metastasis as opposed to a new cancer. He sort of hemmed and hawed a bit and said I was absolutely correct. Then he said brightly that if there were any other spots that showed up on the bone scan, then we'd know for sure that it's breast cancer in the bones. He checked the report, and of course there were no other spots on the bone scan. So he thought for a bit more, and then he said that it was very unlikely that a new bone cancer and the breast cancer would show up at the same time. Well, yes, that's true - but I don't find that last argument all that convincing. I mean, it's highly unlikely that a bone lesion would have showed up at all, let alone be larger than the breast tumour :) Also, this entire experience has been one of "well, it's highly unlikely that <blah> is the case, so it's probably not <blah>". And then it turns out to be <blah>. Maybe I'm just a bit spooked by all of that :)

What he recommended is that we go ahead with the hormonal treatments, which is to remove my ovaries and start me on the aromatase inhibitors. If the lesions don't get smaller and/or the pain doesn't lessen, then we would do a biopsy. I think I'm ok with that, provided that we don't have to wait too long to do the follow-up scans and stuff. We'll see what my family doctor says tomorrow and what the medical oncologist says on Tuesday. I see my surgeon on August 21, so if we are removing my ovaries right away, then I hope we can do that August 29 or the day after Labour Day. As an aside - I can hardly wait to see my surgeon. He's not going to want to believe that I have bone mets, because he barely believes that I could have had a recurrence at all :)

I also talked to this oncologist about the pain. I know that the theory is that the pain should go away once we do something that looks like treatment... but that's still 3 or 4 weeks away, and I can't go on with that kind of pain. He's put me on T3s for now. They're ok. They don't make me nearly as fuzzy-headed as the Percocets, and they don't have the other side effects I get from the Percocets like the itching or the nausea or the migrainey stuff. They take almost all of the pain away - I'm hoping that once I've got the drug in my system, all of the pain will be gone. The doctor also said that once I figure out how much of this I need, they can put me on a time-release pure codeine pill. His idea is that I'll have some idea of the required dosage by the time I see the other oncologist on Tuesday.

He also explained a bit why the pain is so bad: it is because of the previous radiation. I guess the cancer kind of eats away at the bone and makes a tumour, and the bone tries to heal itself. Irradiated bone is different than non-irradiated bone in some way that I don't know, which is why it hurts so much. The healing also explains the deep itching I'm getting over the lesion on the irradiated side. As I'm sure you can imagine, scratching at it doesn't help, given that it hurts if I touch the area :)

BTW, in case you are curious, we want the cancer in my sternum to be bone mets (ie a breast cancer metastasis to the bone). They're getting to a point where for some people, bone mets are a chronic disease that is managed. The prognosis is pretty good, comparatively speaking. The prognosis is much less good for a radiation-induced cancer.

Also, thanks for all of your support. I really appreciate it - it's comforting to know that there are people in my corner.

Not exactly pain-free

I had my group therapy thing this afternoon, so we left the cottage this morning to come back to Waterloo. We'll go back there tomorrow night, after I've had my hair cut and see the oncologist.

I get to get the CT results from the oncologist tomorrow, although of course I already know them :) Still, this will be an opportunity to get the next steps underway, as well as to talk to him about the pain. My family dr will also try stuff for the pain, as I want to stay off the narcotics for as long as possible. The 650mg of coated aspirin 4x/day isn't working. It's better than nothing, and it's better than the Arthotec (which doesn't work at all), but it still isn't enough. I know that aspirin is the first painkiller they give for mild pain, but I'm pretty sure that we're out of the realm of mild pain and into moderate pain. The aspirin takes the pain from moderate to mild; the Arthrotec has no effect on the pain, either alone or with the aspirin.

I'm a little concerned at how quickly the pain has been getting worse. I can't lie on my right side at night now because it makes the pain flare up. I'm also having trouble with seatbelts. They cross my sternum at almost the exact place where it hurts. That's why, for the longest time, I thought (ok, hoped) that I'd hurt my sternum while driving somehow. So, you might ask, why are we driving back and forth to the cottage? Because going to the cottage is fun and I refuse to give up things I like, even if I'm in pain right now :). It's easier if Ian drives and I'm a passenger, so I might make him do some or all of the driving over the next few days.

Fun with kids

We got an early start to the day because there was a crow cawing ouside just before 6am. Thankfully, someone's alarm went off and scared it away. When the sun came up a little while later, Ian (and therefore me) got up. I didn't expect to start quite so early :)

We spent most of the morning at Kempenfest, which is a very large arts and crafts show in Barrie. There were a lot of vendors with a wide variety of wares for sale. We didn't buy anything, but it was fun to poke around and see what was there.

I don't think I've mentioned that we're sharing this cottage with a couple of kids - one is 3 1/2 years old and the other is 1 1/2 years old. They're great kids. The older one spent quite a lot of time with me today - at one point, as he was getting changed to go swimming in the lake, he tossed his underwear at me. I was cleaning my glasses at the time because he'd got stuff on them when he locked foreheads with me earlier, and so I didn't see the underwear coming towards me. They hit me in the face, which caused all of the adults present to collapse in fits of giggles. His mom told him it wasn't nice to throw things (which of course it isn't), and his reply was "but they're laughing". So all of us adults desperately tried to stifle the giggles and put on straight faces so that he would know that he shouldn't have thrown the underwear... even though it was really, really funny.

Later on, we were filling the wading pool for the kids to play in. I was watching the younger one fill the pool - he was holding the hose, and as if in slow motion, he turned towards me and sprayed me with water. That probably wasn't very nice, either, but it was also very funny. Ian is still laughing about that.

Traveling day

Ian's brother was in Mississauga for a wedding, and so we went to their parent's house for dinner tonight. We got to meet Ian's brother's girlfriend; she's very nice. Dinner was very yummy :)

After dinner and dessert, we drove up to a cottage where we'll be staying off and on for the week. It's just southeast of Barrie, ON. Since it was dark out, the drive was less fun than you might imagine - the highway was still packed with cars. Once we got off the highway and into the country, the road was of course a bit narrower. Some light fog rolled in as well, and many people in the oncoming lane were slow to turn their high-beams off. However, we made it here safe and sound. The cottage is quite nice and spacious. There appears to be a large deck outside overlooking the water, but since it's dark we haven't really explored that part :) This cottage is quite a change from the previous one - it's got wireless internet access and everything, so we'll be well connected while we're here. it'll be just like home, but with more space, more company, and a better view :)

Flying and a movie

A friend of ours has his pilot's license and took us for a plane ride today. We flew from Waterloo to Shelburne to Goderich to London to Stratford and back to Waterloo. We were up for just over 2 hours. It was a beautiful day to go flying - the sky was a beautiful cloudless blue, there was little to no humidity, and it wasn't too hot. Ian took a bunch of pictures; you can see them here.

We also saw the movie A Scanner Darkly, which is based on a Philip K. Dick novel. The film is directed by Richard Linklater, who also directed Waking Life. Both films were shot and then rotoscoped, which lends them a weird half-animated floaty quality. We thought that the rotoscoping in A Scanner Darkly is better than that in Waking Life; there seemed to be more depth to the animation, and some scenes looked almost real. This may have been a choice by the director, though, to support the confusion, uncertainty, and dissociation that the protagonist was experiencing.

For the most part, I enjoyed the movie. It was definitely Philip K. Dick - it portrays a dystopian, police-state future where no one is who they seem. The only thing that was weird to me is the way A Scanner Darkly strongly reflects the culture and negative aspects of being a drug addict. In a way, those themes felt much more like Philip K. Dick saying something to the reader/viewer than the book/film saying something to the reader/viewer.

Funeral today

There was a pretty good turnout today at the funeral. I tell you, funerals are hard - I cried the whole way through, and I'm pretty sure that I wasn't the only person in that room with tears in their eyes. It's very hard and sad to say goodbye to someone, although there is something comforting about knowing that the grief is shared amongst everyone in the room. I also had a hard time thinking of something to say to his wife and son. I managed to babble out something or other that I think sounded reasonably coherent. I'm glad that I went.

The family asked for donations to the Canadian Liver Foundation and the Kidney Foundation of Canada in lieu of flowers, and so we both donated to the Kidney Foundation as it's a charity near and dear to our hearts.

Oh a slightly better note - my abdominal ultrasound came back clear. This means that there is no detectable cancer in my liver, which is a very good sign. I take my good news where I can get it :)

CT results

I saw my family doctor today. I'd wanted to give my doctor the long-term disability forms, and I also wanted copies of all the recent test results (including the CT scan). It took a while, but they finally got the CT results faxed over. I wasn't wrong in my interpretation of the technician's statement, I'm afraid - there is a "this" there, all right.

There is a 1cm x 0.6cm lesion on the right side of the sternum, and a second area on the left side of the sternum at the same level. Given everything, these are strongly suspicious for metastatic disease. Put another way, I almost certainly have cancer in my sternum. It's most likely that the cancer is breast cancer that has spread (aka "bone mets"). There is another possibility, though, and that is that the cancer is actually bone cancer that is a result of the radiation that I had before. Very rarely, radiation can cause new cancers, and at least one of these lesions is in the previous radiation field.

My family doctor wants a biopsy done so that we can determine whether it's breast or bone cancer. I agree with him, of course. We don't want to guess wrong, here - we have to know what kind of cancer this is. I see an oncologist on Wednesday, and hopefully he will also agree that a biopsy is needed. If not, then I'm sure that my family doctor (who I see Thursday) will arrange something :)

My doctor is also taking the pain in my sternum seriously. The aspirin helps a bit - I don't get the big spikes of pain anymore, but I still get a continual ache. So we're going to try Arthrotec. If that doesn't work, then we'll try something else. I've asked him to stay away from narcotic painkillers (I hate taking them), and he says that there's lots and lots to try before we have to revert to a narcotic.

With everything going on, I'm really tired. It will take time for me to process all of this, even though a lot of it is confirming what I already knew. It's more real and more scary to me now.

Sad news

My former colleague died this morning :( Apparently he had opened his eyes last week and seemed to acknowledge his surroundings, but I guess he wasn't really any better. He was a great person to work with - he was very kind and very generous. He never hesitated to help people when they needed it. Whenever I needed to ask him for help, he was always willing and able to help me. He also had quite a sense of humour. Who can forget the time he and another person sung "Stand By Your Man" to me? Ok, it wasn't the most appropriate thing to do - but it was funny (it wasn't funny the times the other person sang it to me afterwards, but that's another story).

The visitation is tomorrow and the funeral is on Friday. I don't think that I'll go to the visitation, but we'll go to the funeral.

He was only 40. I'm so sad. My thoughts are with his family - he leaves behind a wife and son.

The heat continues

It's still really, really hot - apparently there are all sorts of records that are being broken these days. I read that it's like this all over the place, not just in Southern Ontario, although I'm not sure a lot of the other places have the same kind of oppressive humidity we have. It's like breathing thick, soupy air. I think that the heat is supposed to break tomorrow, at least.

We went over to a friend's house and played Bohnanza (we really like that game because it's so simple), Blokus, and Taboo. I really like Blokus - it's only real flaw is that it has red tiles and green tiles, so someone who is red-green colour-blind couldn't play the four-player version. Like Bohnanza, it's a really simple game whose instructions take almost no time to describe but that can still be quite challenging. The other nice thing about playing games is that we were in air-conditioned comfort all evening :)