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!

Seeing the doctor tomorrow

I'm seeing my family doctor tomorrow to get my stitches out. Yay! The bottom two have closed up the shorter cut and the top one doesn't appear to be doing anything to the longer cut. The longer cut is looking pretty good. My head is feeling better - I've hardly been dizzy at all lately and I don't have much in the way of headaches. I would like to talk to my doctor about whether I need any follow-up treatment because I think I had a concussion.

I heard from my optometrist's office and my new glasses will most likely be in by Friday :) They also said that they could set my current lenses into new frames (well, a new version of my frames) so that I have a backup pair of glasses. I suppose that's a good idea, but I'm able to see out of these glasses as-is and I don't think I'd wear a second pair. I love new glasses because it's fun to wear new frames :) If I fixed the old ones then it would be a waste of money if I didn't wear them.... but they'd be old and less fun, so I wouldn't want to wear them as much. Still, I'll think about it.

Getting better

My head is finally starting to feel better. The two lower stitches seem to have closed up that part quite effectively, and the upper stitch is... there. We're not sure that it's closing anything :) The rest of the wound seems to be healing up pretty well with me leaving it open to the air. I hope that it doesn't scar very badly. I have some pretty ugly scars and I wouldn't something that ugly on my face.

I was doing some research and I think that I probably did have a concussion. Some of the articles I read said that a person didn't have to lose consciousness to have a concussion. Seeing stars is enough. Not that there's anything they can do about that, really.Up until yesterday I had some dizziness and trouble reading (the words on the page were moving around when I tried to pin them down). I've also had some headaches. I've been fine today but I'll still talk to my doctor about it.

Today we went and found a new pair of glasses for me. I'd been waiting until I could just put a bandage over the wound (so that I didn't get stuff on their glasses or hurt myself) before shopping for frames. I'm hoping that the glasses will be in by Friday; the lenses come from Montreal and how soon I get them depends on whether they have my prescription in stock. I think I'll be quite happy with the new pair as we both liked the look of them quite a lot.

Sleep and more sleep with a side of pain

Since Tuesday evening, I've slept a lot - about 23 hours straight through to yesterday evening followed by about 5 hours being awake, and another 12 hours of sleeping. I've no idea whether I'm tired because of the Pamidronate or the wound but I'm tired.

My wound is still huge. I had it covered up to sleep last night and have had it uncovered for about four hours now and it looks kind of strange. The whole area around it (from my hairline above the right eyebrow to my upper teeth on that side) is bruised and throbbing. I did some pattern work this afternoon and every time I bent over it ached even more. Part of the area looks like it's not in the stitches and it's not really looking like a scab - I don't know what it is, but it looks kind of weird. If it still looks like that or worse tomorrow I'll go to a walk-in clinic or something as I'm worried that it might be getting infected.

I haven't tried the new skin stuff yet because the wound is so long, wide, and painful; if it was shorter and narrower I'd give it a go but I think it should be open for now. I haven't been checked for a concussion but I wish they'd done that. They didn't because I didn't black out when I hit my head. I did see "stars", though, which has never happened before. I do sort of worry that I've bruised or cracked the skullbone. I see my family doctor on Tuesday morning to get the stitches removed, and I'll talk to him then about the possibility of having done something to the bone.

I will be very happy once this is all healed and I'm not tired from the Pamidronate and I get to live a normal life :)

UPDATE: The wound is looking better; I guess I can't leave it covered up for a long time. Whew!

More fun and games

We got together with some other friends tonight for games. Well, we thought we'd get to play games (multiple) or else play a single game and leave early. As it happened, we played a very long game of Citadels and that was it. Funny, the site I linked to back there says that the game is about 60 minutes. I guess we're very slow because ours with 7 people took about three and a half hours. The game was still fun even though it was long. I would have liked to play another game as well, though - someone had an expansion pack for Bohnanza that looked interesting.

I saw my family doctor today and we're going to try and cut the oxycontin painkiller out altogether. I hope that I'm able to get off of the oxycontin; I'm down to a quarter of what I used to take and I'd like to not have to take it at all anymore. The thought that I might not be quite as tired by not taking the oxycontin thrills me :)

Sleep, sleep, sleep, sleep. sleep... and more sleep

I slept all day again today. Sigh. I know that some of you are probably jealous because I'm able to sleep all day, but I find it frustrating. I keep losing these days and they're not coming back... and I'm not losing them for anything really worthwhile except sleep. The worst part is that I'm still tired :(

I guess my body/mind needs that kind of sleep, but I don't like it. I have been sort of tired over the last couple of days but I wouldn't expect that that kind of tiredness would make me sleep all the live-long day. I do have an appointment with my surgeon tomorrow to get the results of the core biopsies but I'd honestly forgotten about that until this evening, so I don't think that has anything to do with it.

My pain is well under control and I'm not taking nearly as much Oxycontin, especially at night, so I'd have thought that I'd be able to get better-quality sleep. I see my family doctor in a couple of weeks and I'll talk to him about this then. I want to sleep like a normal person.

I see sewing in my future

It looks like the new messenger bag is going to be a go; the person is answering my replies, at least :) I'm happy about that, although I guess this means that I should have been sewing drum bags before. I'm ready to start sewing them tomorrow, though.

If this keeps up I'll start having nightmares about drowning in bags :)

I think that I'm able to decrease my oxycontin painkiller intake but I think that I may have tried to decrease the amount too quickly. I got woogly tonight, which is usually a sign of withdrawl. Sigh. I'll tell you, taking a lot of painkillers - even though I have to - is no fun. I don't like that I have both a physical tolerance and a physical addiction to the things. The doctors say to not worry about addiction in this case. At least I'm not craving more painkillers or any other drug, so I think that I'll be ok.

Core needle biopsy aftermath

The core biopsy didn't hurt yesterday, but oh my goodness it has been very sore today! It's swollen and tender to the touch and is definitely bruised. It also turns out that it had been bleeding last night and so I had to do extra laundry today.

I went out to the yarn store and bought a book on knitting with wire. I thought that was pretty cool :) I also bought some yarn that I'll stick in my stash of yarn-to-be-knit. That pile isn't nearly as big as the pile of fabric-to-be-sewn. That's good because I don't have the kind of space to store that much stuff.

Ian and I are both really tired and so it'll probably be a very early night. Hopefully I'll feel better tomorrow - I do want to get some more sewing done :)

An appointment day

The core biopsy I had this afternoon was quite uneventful. I told my surgeon, who did the biopsy, that I needed extra local freezing. He gave me an extra shot without even blinking, which I liked - some doctors argue about that, but he didn't. I asked him how many samples he was going to take and he told me that he'd take as many as he wanted :) He ended up taking eight samples.

After that I saw my family doctor and we're going to change my pain medications once again. I'm to up my fentanyl to 125 from 100 and see if I can drop my oxycontin. I hope I can :) I see my doctor for follow-up in about a month.

And what's a day of appointments without a little shopping? :) I'm currently obsessed with the idea of making myself a shirtwaist dress (shirt dress), with buttons down part or all of the front. I love the 50s styles like that but the retro styles in the pattern books usually have a big full skirt which is not so attractive on me (it makes me look shorter than I am). I found a couple of patterns that I can use to make the dress I see in my head, and I also found some other dress patterns.

I did buy fabric but only one length; it's cotton with stylized flowers on it. And I helped two different people find what they were looking for - one was a mom with her daughter and the other a grandma with her granddaughter. It was fun helping them figure stuff out :)

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.

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 :)

What will I do in January? And how will I get rid of this pain?

Ian and I were talking today about my activities. This fall, I was bellydancing twice a week, curling twice a week, going to Well-fit twice a week, and swimming once a week. That was a lot! I ended up not able to do that much and stopped swimming early on. I missed quite a lot of Well-fit, bellydancing, and curling this fall as well. With the pain up and me feeling overwhelmed, I need to cut my activities even more from January - April.

I am going to quit Well-fit and Monday will be my last. This is partly because of the time it takes, but also because I really like to be pushed at the gym and when I get pushed I end up exhausted or with sternal pain. It's also $150+parking for three months which I could put to better use.

If I take any bellydancing, it'll just be one choreography or one drum class and no more. There's no way that I can do two classes.

I'm going to try and go to curling twice a week since I've paid for the two leagues until April. But if the pain gets to be too much I'll cut one of the nights out. It's tough to figure out which night I'd give up. I love the people and we have a lot of close relationships on Fridays, but the curling is better - and I'll get better - on Thursdays.

I saw my family doctor today as a followup to the new pain meds. They weren't working well so he's started me on the next dose of the fentanyl patch. If that takes care of the pain, then I can start playing with the dosages to try and reduce the amount of oxycontin I'm taking. Hopefully this will work.

Getting better

You know, I'm feeling less tired these days and I seem to have more energy. Today I got up at about 10:30am, put away three loads of laundry, did another three loads of laundry, hemmed some stuff, cleaned up some stuff, cut out and altered the dress pattern I'm working with (it's an easy pattern, but still), and started sewing. That's a lot for one day and yes, I'm tired, but I'm not exhausted. Hopefully I didn't do too much today and that I'm not exhausted tomorrow :) Over the last two days I've done a quite a lot as well but I haven't fallen into a puddle of exhaustion yet, so maybe things are turning around for me.

Don't worry, I'm not trying to push myself too hard. I do each task at a slow to medium pace, I'm not rushing things, and I'm not getting flustered. I take a lot of breaks from each task, too. And when I do get a little tired, I sit or lie down for a little while (although I haven't been napping like I usually do).

At the same time that I seem to have more energy, I think my pain is starting to go down. Yay!!!!! There are places that I can wear the fentanyl patches: my back and right arm/shoulder are good spot, for example. As long as I take my allergy medication on time those spots don't give me too much trouble, thank goodness.

I hope that the less tired/less pain trend continues. Wouldn't that be nice? :)

More bags?

Someone new has contacted me about making a laptop bag made out of men's flannel fabrics. I hope that this bag will go through because I like the business although I had to tell her that I wouldn't be able finish the bag until about January 15 due to Christmas. Hopefully this won't be a problem and I'll be able to make this bag. I will need to find the fabrics before I start - she wants heavy nylon on the bottom, which makes sense.

This person also suggested that I make some laptop bags aimed at men because the ones out on the market are not nice. Honestly, I think that these bags are more popular than the jewelry that I make! I prefer making messenger bags but if laptop bags are going to sell, then maybe I should try and make some non-custom ones for sale. I did buy some great houndstooth fabric for bags so the idea of making bags out of menswear fabrics isn't new. Marketing to men is definitely a new idea.... although I'm wondering if maybe I should be marketing to the women who buy for their men :)

Pain update: I'm noticing that I'm quite sleepy and a bit dozy today on the new painkiller. This is not unexpected. I think the pain is starting to lessen a little bit but it's hard to say. On the positive side, the patch isn't bothering me too much yet.

Pain, pain, go away

I saw my family doctor today because the pain in my sternum has been steadily increasing. It used to be that if I was awake for about 12 hours in a day I'd take the oxycontin three times in the day and if I was awake more than 12 hours I'd take oxycontin four times in the day. Lately I've been taking oxycontin four times every day and that's still not enough to keep the pain under wraps. Sigh.

My doctor gave me a prescription for the Fentanyl patches again. We're starting with the lowest amount in hopes that it will take the extra pain away. If it works, I'll be upping the fentanyl and decreasing the oxycontin until I'm off the oxycontin completely. The only stumbling block is that I get welts under adhesives.

I talked to the pharmacist and apparently the fentanyl patches come in two generic versions, each with their own adhesive. Some people end up tolerating one brand over another (I'm not the only one with the adhesive problem). I'm trying one now, and if it doesn't work I'll try the other one. If that still doesn't completely work, I'll pick the one that works best. Reactine (an allergy medication) comes in prescription-strength and the pharmacist thinks that taking this should counter the allergic reaction to the adhesive (if I have one).

So even though I'd had those problems with this pharmacy before, I'm glad to actually know my pharmacist because she knows my situation and she tries to help me.

When I put the patch on, my pain did lessen. And I got kind of dopey :) No driving for me for a little while.

Oh - and remember that I wanted tall shoes? With a platform and stiletto heel? Well, I'd seen this pair of shoes a few months ago, tried them on, and loved them. They were $70, though, and I didn't really want to pay that much. Since then, I've been thinking about those shoes and looking for them everywhere. Tonight, I finally found them in my size and I bought them! They have a platform and a tall heel - it's not a stiletto, but it has a very strong heel. There's a tiny peep-toe in front. They're a pump and the front has rows of black sequins. The back and heel are patent leather. Yummy! This page shows them in brown, but those pics don't do the shoes justice at all. Imagine them with black patent leather, please :)

A short day

I'd planned to get up really early in order to both cut out the messenger bag pieces and to do some shopping. I ended up sleeping in until 12:30pm, though, so I did no cutting. I did manage to get some foam for the laptop portion of the bag. I went to The Foam Store where I got 1/2" high-density foam and 1/4" Volara foam. The latter is apparently used for protective packaging and I think it'll be perfect for the removable sleeve for the laptop.

Plus, the foam was cheap!!!! It cost only about $17 including tax for everything. This store has a lot of memory foam as well, if you're looking for that.

Later on I had to stop curling. The pain is coming up again. I've started a new exercise program and it might be that one of the new exercises is bothering me. Or it might be that the mets are actually growing/hurting again. It's weird because there are new spots that hurt, and these spots seem to be on the cartilage connecting the ribs and sternum or on the ribs near the sternum.

I talked to the people at Well-fit and we're going to modify the exercise that's bothering me. If I don't see a change by the end of next week, I'll call the pain and symptom management doctor - she said to call if the pain went up again as we'll try another painkiller.

A lonely day

Ian's been gone a few days now and I'm starting to feel a bit lonely. Normally I like being on my own for a while as I'm an introvert by nature and I lived by myself for a long time. I do love living with Ian and spending time with him ... but I love being by myself, too. Usually I don't start to get lonely like this until at least a week or so after he's gone.

I'm finding myself sort of puttering around here and there doing little bits of things. The place seems too big for just me; I can't seem to fill it. I try and follow the routines we have (except for the exact bedtime time - when Ian's not here I stay up later), but they're not the same without him.

I guess that part of the reason I'm feeling this way is that the pain is up a little bit and there's no one to be whiny to. :) Seriously, when the pain is up I get a lot of comfort from being with Ian. I'm also quite tired; I worked out at Well-fit today instead of yesterday because yesterday was Halloween, and I had bellydancing class, and I curled tonight.

Ah well, tomorrow is another day - I'll sleep in, take it easy, and generally enjoy myself :)

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.

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.

Just a lazy Sunday

I didn't sleep all that well last night - I had pain issues that woke me around 1am. My sternum was hurting pretty bad for some reason. They did just change my program at Well-fit and I know that I have more pain when I open my chest wide, so it's possible that one of the new exercises is contributing to increased pain. I'd have expected the pain to come on Thursday or Friday, though. And yes, I know that I had been trying to decrease my pain meds but they've been up to normal the last few days. I'll talk to the Well-fit people on Wednesday.

I also had some nightmares last night which didn't help my sleep. I don't know where these dreams come from, but they're certainly interesting. In one earlier this week, I dreamt that I was showing people through this house that I've seen quite a lot in my dreams. It's a nice house, most of the time. Sometimes it's scary. Anyways, as I walked through and saw all the changes that had been made to the house, I told the people I was with that I used to live in this house but I don't anymore; that I'd moved on and these people had taken it over and fixed it up. I'm sure there's deep psychological meaning to this but to me it's like a movie that plays just for me at night.

I did spend some time cutting out the fabric for the custom bag I'm making. Tomorrow we're going to Mississauga and so I won't spend as much time sewing as I'd thought. That's ok, though; I'll do some before we go.

I also spent some time looking at all my beads. Yes, I made some earrings, but the majority of my time was spent just looking at the beads I have. While doing this, we watched two movies on tv from the 80s - Weird Science and Class. Oh, the memories :) It was a lovely way to pass the time.

Slowing down

I don't know what happened to me today - for whatever reason, I slept and slept and slept. I got woken up at about 8:30am because Ian needed my driver's license for our rental car (our normal car is going in to be fixed after being rear-ended). I got up, took my pills including Ritalin, and went back to sleep at about 9:30. I got up around 12:30pm again.

I had some errands to run and when I got back I was still very tired. Instead of going to Well-fit, I slept. I took my second Ritalin today, too. I'm exhausted again and will be going to bed soon. How did this happen?

I do know that my pain is up a little; I had been lowering my painkiller usage a little bit. For whatever reason the pain is spiking a bit - could that be the reason why I am soooo tired?

Anyways, it looks like this custom bag is really going to go through - I'm so excited! Of course I've spent more on options than I'll take in, so I hope that I get another order soon.

More doctor's appointments

I saw the pain and management specialist today for follow-up. She's doubling my Ritalin dose because it I'm still sleeping a lot - 11 or 12 hours a day. I think she expected more of a benefit from the radiation, but we decided that it wasn't worth changing my pain meds now since they seem to be working just fine at managing my pain. My pain is under control and doesn't reach the same peaks as it used to. I haven't been able to significantly reduce my painkiller intake, but then again, I haven't had to increase it, either. She did say that if my pain increased again that I should see her and we would try morphine or dilaudid for the pain.

I also got a prescription for the H. Pylori bacteria. It's a seven day course of Prevacid, amoxicillin, and clarithromycin called HP-Pac or Prevpac. I thought that the treatment for H. Pylori was a lot longer, but I guess they've made advances in this area, too. I hope it works :)

I saw my family doctor today

My insurance company wants me to apply for Canada Pension Plan Disability because I've been off work for awhile and it's expected that I'll be off for some time yet. My family doctor has to confirm that I do have a medical reason to be on disability. I also needed to update him on what's been going on with the Ritalin, the radiation, and the possible cataracts. He figures that I most likely have the start of cataracts as well. Sigh.

Mostly, I needed to talk to him about some problems I've been having digesting certain foods. I don't seem to be digesting foods like bananas, lettuce, and red peppers properly. When I eat these foods they give me terrible pain (it kinda feels like razors scraping my insides) followed by diarrhea that sometimes wakes me in the middle of the night. I've always had problems digesting some foods like fat and dairy products, but the inability to digest the foods above is new and is getting worse. When I talked to my doctor about this today, he at first told me to just not eat these foods. After I explained what it felt like and what happens he decided to look into it further. He's referring me to a gastroenterologist.

It's entirely possible that the problems I'm having stem from some subset of the drugs that I take, or that I have some kind of food intolerance, or even that I have an H. pylori infection gone wild. I don't know whether to hope for more tests to figure out what's going on or for the specialist to say that these symptoms are nothing to be concerned about. I guess it's important to get these symptoms checked out.... but in some ways I'd rather remain blissfully ignorant. You know?

The last leg of our trip

As promised, I'm going to tell you more about the last leg of our trip as well as some general observations.

We were in Pittsburgh on the last night. We didn't know anything about Pittsburgh except that it's compared to Hamilton, a steeltown city which is ugly. Pittsburgh is beautiful!!!!!!!!! It's all hilly and has lots of trees and bridges and it's just gorgeous. We had no idea that it was so pretty. The downtown is especially lovely with lots of interesting buildings and bridges. We were in another part of the city that was still lovely. We'd think about visiting this city another time because it is so pretty.

One thing that we thought was really cool about Virginia and Pittsburgh is that we had to drive through tunnels there. Yes, tunnels!!!!! They were so cool - the ones in Virginia that we went through (Big Walker Mountain Tunnel and East River Mountain Tunnel) were about a mile long each so that when we were in the middle we couldn't see either end. I'd have loved to take a picture of the inside of the tunnels but of course we couldn't stop :). We went through two tunnels in Pittsburgh: Squirrel Mountain Tunnel and Fort Pitt Tunnel. There's a LOT of traffic in these tunnels and so they are pretty slow. In one of them a lane was blocked by a couple of young teenage girls in a Mercedes SUV "seat dancing" and driving at about 5MPH. I'm pretty sure these girls were under the influence of something.

Unfortunately I didn't sleep well that night. I wasn't feeling well that evening and so I didn't take my evening pills, including my painkillers. I hadn't taken painkillers in the early evening because I didn't need them then. This meant that I woke up at 4am with the start of oxycodone withdrawl symptoms. I had sweated a lot (this could have been a night sweat or a hot flash). I also had a wickedly woogly back and this is a definite symptom of oxycodone withdrawl for me. Sigh. This was very stupid of me. It took me about an hour and a half to get this under control and I'm not going to do that again.

I also learned through this incident that I will not be able to reduce my painkiller usage to nothing. The pain in my sternum was very, very bad during this time and so while the radiation helped to some extent, it didn't make the pain go away completely.

The drive home was uneventful - we pushed pretty hard because we really wanted to come home. We were both quite tired because I was awake in the night but we were able to get through the drive pretty easily. The border crossing took about 15 minutes and then we had a bite to eat. We got home while it was light out and were able to get settled back in and everything.

One cool thing that we saw when we came home was a bunch of orb spiders!!!!!!!!!!!! One or another of the spiders last year must have laid eggs because we have about 9 little orb spiders in the back and some number in the front. They're so cute!!! Their legs are smaller than their bodies but they still have the striping we'd expect. I tried to take pictures but they didn't turn out. I'll try again soon. I'm looking forward to seeing them grow up - and seeing how many we actually end up with.

I really enjoyed our trip overall. I liked the juggling shows and I was happy that Ian had a good time at the festival. I liked seeing the different parts of the country that we saw, from a flora, fauna, and geological perspective. The different types of rock in each part of the country were really neat. The views were spectacular almost everywhere we went. I also liked seeing different buildings and cities with differing architecture.

One thing I didn't like was that I discovered that I had a tendency to panic whenever I had trouble navigating or driving when navigation was difficult. I think that I basically was having panic attacks and winding myself up into them. It was sort of like I was watching myself get more and more wound up and overwhelmed. Ian and I talked about it and he suggested meditation during those times. I think that this is a good idea. I'm also going to talk to someone I know over at Hopespring to see if she can give me some help with this.

Overall I loved our vacation and thoroughly enjoyed myself. I had a great time and I would do this again - I really like a driving vacation. I'm glad to be home, though :)

A full Friday the 13th

There is no cancer in my liver. Yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I'm so happy about this. I'd had a funny feeling in my liver and I was worried, but I guess there's probably something wrong with my stomach or something.

IU also talked to my oncologist and I think it went really well. I approached it from the standpoint of "we never really got off on the right foot; I love your compassion and caring and I need that as well as more technical information." I also apologized for behaving angrily last time. I felt really comfortable afterwards - at least I feel like I can talk to her if I need more from her or need a lot of technical stuff. She is going to give me copies of all of my test results and I got all of my tumour markers. I'm good with that.

Because I had radiation two weeks ago, the cancer cells are dying off and sending out the protein that the tumour markers check (this is called "tumour flare"), so the markers will be high right now. We're going to wait until the end of August to do the tumour markers again. I'll be able to call and get the results in early September; they're setting that up for me. I'll my oncologist again in three months (October?). If my tumour markers are up again in August I guess we'll do them again and see. If they're up then, well, something is going on. I don't think that'll happen, though - I really think that my condition is stable.

My pain is really going down; I feel like a completely new person now. I feel a LOT more energized and able to do things. For the first time in a long, long time I feel like I could actually do work. And I'm excited, even, at the thought of working (which hasn't happened in a long time). I think that I'm going to try to go back at some point, either in the fall or in January.

The insurance company sent me the application for CPP disability benefits. Sigh. I don't even know if I qualify - I have to have worked for some number of years prior to the disability, and I don't know if I've worked that amount because of all the coop stuff.

I'm not going to think about any of that, though, because tomorrow we're going on vacation!!!!!! We're all packed up except for our last-minute toiletries and computer stuff and the car is loaded up. Tomorrow we'll get up, pack the last stuff and hit the road. We hope to make it to Scranton in time for the coal mine tours :)

Avoiding tomorrow

As you know, we're leaving for North Carolina on Saturday (in two days). I should be cleaning and packing and getting ready for that, you might think.

I didn't do any of that today. Instead, I spent much of the day driving to Bass Pro Shops at Vaughan Mills to get myself a new tackle box for my beads. I managed to wander around part of the rest of the mall and try stuff on, too. Everyone's got stuff on sale :) I only bought the tackle box. It's got wheels and a handle and can also be carried as a backpack. Since my beads weigh about 40 pounds, I didn't want to get one that can only be carried via a shoulder strap or something as it would be too heavy. I'm very pleased with my tackle box purchase - especially since I got it 50% off when I was only expecting it to be 25% off!!!

So when I came home, did I pack and stuff? No. I decided to continue trying to make a dress. I got to the point where I have to take something out (if I don't sew for a while, I forget about how to attach the lining to the outer fabric when sewing a fully-lined sleeveless dress. Sigh.) and then I stopped.

I don't actually think I'm avoiding packing so much.... I have an oncologist's appointment tomorrow. I don't actually think that the liver ultrasound will show anything, since no one has called me, but of course I am a bit worried about that. In addition to that, I need to talk to my oncologist because I'm not comfortable with the way that she gives us information and I'm dreading it (as is Ian). I kind of get the feeling that she talks down to us and that she isn't volunteering information to us (like if I don't ask, she won't tell). She rounds the tumour marker numbers to present them in their best light, and I'm worried that she's not in my corner. I do know that the situation as-is is not good for me and that something has to change. I'm willing to give her another chance although I might be happier with a referral to one of the other oncologists there.

I am going in assuming that she has as much trouble dealing with me as I have with her - I'm not so conceited as to assume that this is a one-way street. We'll see how it goes. Sigh.

On a positive note, the pain is definitely decreasing. I haven't had to take Percocet at all this week and I've been able to cut my painkillers from 4 times a day to 3 times a day. I can't just go off my painkillers; I have to be weaned off because I'll have a physical tolerance for it. I do hope I can cut my painkillers even more :)

I feel pretty.... and cranky

I went back to my normal hairstylist to get my hair cut today and I am SO much happier than I was the last time it was cut. I'd gone to another stylist at another salon because my hairstylist upped my prices. Even though the other salon gave great service with head massages, hand massages, and the like, the hairstylist didn't do as good a job on my hair. She was very rough with the comb on my head which was very uncomfortable. And even though I told her that my hair winged out in certain places and asked her to cut it so that it didn't wing out, she ignored that request. So my hair was kinda funny-looking.

Anyways, I'm much, much, much happier with my new hairstyle. She fixed it up and made it look awesome - and I know that it won't wing out. :)

So the pain still hasn't gone down, unfortunately. I'm taking maybe 2 percocet a day, which is a bit less than before, but I'd like to not have pain. I'm also still quite tired. If I have enough caffeine I can stay awake all day. Should I need caffeine to stay awake?

I'm feeling a bit restless and unsettled, with some crankiness and moodiness thrown in for good measure. I don't know why I'm feeling this way, although Ian's guessing that it's probably related to the pain and tiredness. But I'm finding myself alternately wanting to be left completely alone and wanting someone near me. It's almost like everything is a little bit off-kilter, making me feel both overwhelmed and lonely. How is this possible? Why am I feeling this way? How can I get rid of this and be more balanced? Any ideas?

I don't think I'm worrying about the oncologist; I think that she may have called today if there had been something wrong, so I'm feeling cautiously optimistic on that front.

A very sleepy day

They say that radiation makes a person tired. I'd been doing ok over the weekend, but I slept until noon today, had a nap in the afternoon, and could go to bed now. Yes, I took Ritalin today. I'm wondering if I'm taking a high enough dose. I went to Well-fit and was able to do the weights but I couldn't do the cardio. I just couldn't. I tried and made it for 10 minutes - my pulse went up to 160 and I just couldn't go on. So I stopped. I'm also having trouble with hot and cold - I'm either broily hot or freezy cold, almost like I have the flu. I thought that the tiredness was supposed to be like the flu, but not that I had the rest of the symptoms of the flu! I hope this goes away soon.

The pain in my sternum had been sort of down but it's up again a little. I hope that it does go away. I want to be awake and pain-free. Is that too much to ask? Sigh.

We take the Mazda 3 Sport back tomorrow. I'd leased it almost three years ago and tonight is the last night I'll have it :( We got it because we'd started paddling on the dragonboat team in Stratford. At the time, we were getting a ride from one of my coworkers to Stratford and then we'd borrow his other car to get him. He would pick it up at work the next day, having got a ride into work from a third coworker. Sound complicated? It was. So we got the car. I got the first car I test-drove because I liked how it was sporty and powerful and fun to drive. We managed to get the car right off the lot - someone had ordered it but didn't want it. It didn't have all the bells and whistles but it was fine for us.

I remember that getting insurance was a nightmare because although I'd had my license for 10-ish years at that point, I'd never been insured in Ontario. Therefore, I was considered to be a new driver and they wanted to charge me $3600/year - more than I was paying for the car! Ian's mom suggested that I try Meloche Monnex because they have a special rate for University of Waterloo alumni. I did, and their rate was about a third of what the other companies wanted to charge me. It worked out well in the end; they take care of all of our insurance needs.

Anyways, I'll miss the car. I've enjoyed driving it around for the last three years - to and from Stratford, to dragon boat events all over the place, and everywhere else. It was my first car and even though I knew I wasn't going to keep it, it served me very well.

Sale still on!

I sold some earrings - thanks! I have finally finished listing all of my stock so if you haven't checked out my store yet, now is a good time to do it :) There is a lot of variety in the earring colours and styles so there is something for everyone. For those of you that like the Waves of the ocean earrings, you might like these Green waves of grass earrings. They both have similar beads in different colours and evoke a similar impression in me.

I also have some lovely earrings using millefiori beads - these are glass beads that have flowers embedded in them. They are gorgeous when the light shines through them. I have these simple green ones, these other simple green ones, these yellow ones, these orange ones, these bigger green ones, and these aqua ones. As well, if you like interesting, fun earrings, have a look at these Flourite cube earrings. And of course I have quite a few simple glass earrings with two or three beads; these are about $10-20 each, depending on the number of beads.

Don't forget to look at my older stock as well; there are some beautiful earrings there. There are also a few necklaces that you might like. I like them, myself :) As I've said before, there is something for almost everyone in my store. Please note that all the jewelry in my store is arranged by dominant colour of the item. Now go and shop :)

The sternum pain is flaring up a bit and the skin is definitely red. There's a red rectangle in the center of my chest; it looks strange. I hope it goes away soon. I'm definitely keeping it out of sight so that the sun doesn't get at it. I'm also more tired than usual, but I'm managing to get by. I hope tomorrow is better.

Radiation starts soon

The radiation oncologist's office called and I have an appointment on Friday at 11:15am with the oncologist and the radiation technician. After that, we'll mark me up for radiation and we will start radiation that day beginning at 1:15pm. That is much faster than I thought it would be - I didn't think that I would get in so quickly. I don't know how many radiation treatments I'll have. I think it will be 5 or 10. I hope that the pain flare is over (or hasn't started) when we go to North Carolina. When a treatment works the pain usually gets much worse before getting much better.

I started taking the Ritalin today and didn't really notice any difference. I'll have to see over the next couple of days if there's any change. I really, really hope it works.

I got to spend pretty well the entire afternoon taking photographs. I have about 60-odd pieces of jewelry that I'd like to have up in my etsy store before the sale this weekend. I did all of the coloured background pics; now all I have to do is edit all of the pictures. I hope to do that tomorrow and Friday to have the stuff up by Friday. Given that there are so many pieces, I'll probably end up adding a few on Saturday.

Because there are so many pairs of earrings, I'll need to split them up somehow. Each item can only go in one section... so is it better to separate the earrings by colour or by length? What do you think?

Pain and symptom management

So I saw the Pain and Symptom Management doctors today. It was very, very informative. They did a sensitivity test on my sternum, and it turns out that it's sensitive to even the slightest touch. What has probably happened is that the soft mass that was growing as part of the tumour is pressing against some nerves. There are a bunch over the sternum there, so it wouldn't be surprising that the tumour would hit one or another of them at some point. Oxycodone doesn't do anything for nerve pain, which might be why I don't feel that it's working as well.

What they suggested for the nerve pain was A535 or something similar, lidocaine if that doesn't work, and capsaicin cream if those doesn't work. They also suggest going through with the radiation and if the pain is not controlled after that to start taking one or another medication that targets the nerve. We decided to not try this medication right off the bat because the radiation might actually take care of that pain as well as the bone pain. I have put a call into the radiation nurse; if we can do the radiation before we go to North Carolina, that would be great. We'll see. I hope to know tomorrow.

As for my tiredness, they think that ALL of my medications are contributing to my tiredness. They've prescribed a low dose of Ritalin for me that should take care of this. It is possible that once I have the radiation, I will have more energy and I'll be able to decrease the dose of the Ritalin. I'll be starting the Ritalin tomorrow. I really, really hope it works, because I'm really, really tired of being tired.

I've also been having stomach problems, off and on; I get a tummyache after eating (and especially after eating bananas). I take Nexium for that, but it hasn't been working as well as it had been before. Therefore, they want me to have the test for the bacteria H.Pylori. That's been scheduled for the end of July. If I do test positive for this bacteria, then I need a round of antibiotics. In the meantime, I'm to take Milk of Magnesia in the hopes that it will help soothe my stomach.

They checked my spine and I actually have a new sore vertebrae up between my shoulder blades. I didn't know that one was there; it's possible that there are mets there that aren't showing up. There appears to be a sore spot on my liver also; it's unlikely that I have liver mets, but I have the ultrasound on Friday just in case.

That's a pretty long day, huh? :) After that, I took a bunch of photographs of my jewelry and we watched The Card Player. This movie is directed by Dario Argento - he apparently directed such ground-breaking classics as Deep Red and Suspiria - these movies influenced most of today's horror movies. Apparently they're like very, very gory detective movies.

While we were watching the movie, the neighbour's cat came buy for a visit. He is white with grey patches, and he has yet to grow into his tail or his ears :) He and I had a bit of a cuddle, much to Ian's dismay. The cat has hung around for a while - fortunately, it didn't catch any of the chipmunks in our yard even though it went under the steps to their main lair. Whew.

Some good news

I have an appointment with a pain management specialist tomorrow morning!!!!!!!!! I'm so excited! The pain is bad and I'm tired of dealing with it - I'm hoping that the doctor will be able to help me, either by giving me new drugs or new pain techniques.

Ian and I have decided that we are going to go to the International Juggling Association Festival in Winston-Salem, North Carolina in July. I'm really looking forward to this trip :) We're going to drive down over a few days, spend the week, and drive back. We are planning doing the trip in five or six hour legs, so we'll be going to Scranton, Pennsylvania and then Was