Errands on a rainy Friday

The building where the breast screening program is located is gorgeous. It's got a great lawn and little gazebo things and stairs and flowers and it smells nice - it had just rained and it smelled like flowers and trees and not pollution. Apparently the building houses people in long-term care, and has a psychiatric long-term care facility, among others. If I had to be put away for psychatric reasons, that would be a good place to be - it's peaceful there.

The mammogram was uneventful. Because we're looking at a particular area, the technician took an extra film of that breast. She also took an extra film of the other breast because she couldn't get a good view with the normal films due to the port on that side. The films are all digital so it didn't take long for her to check them. My oncologist should have results in a week.

Remember I was talking about one of my teeth having shifted? I've been obsessively looking at my teeth and two others seem to be shifting as well. One is the lower incisor (I think) and the other is a back molar. So that's three teeth that have moved. I can also wiggle all three teeth ever so slightly, or at least more than any of the teeth that haven't changed. There is pain when I bite down on the two front teeth and my jaw aches when I bite down on the back tooth. I've had these symptoms for a few weeks and it's only recently that I've been putting them together.

My dentist is out of the office for another week and I'm not sure whether I should be trying to get in to see another dentist before mine gets back. On the one hand, I'm a bit worried because loose teeth (especially when there's any kind of pain) are bad, but on the other, I'd rather see my own dentist. I'd be willing to see Ian's dentist because he knows of the problems with bisphosphonates - but is this enough of an emergency to go to Mississauga? I don't know.

A fun-filled CT scan day

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

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

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

Games night fun

We got to play games with our friends tonight to celebrate one of them being back in town. It was a lot of fun - we played Alhambra with one of the extensions (Wechselstube) and For Sale. I hadn't played For Sale before and I enjoyed it very much. It's fast-moving and easy to understand so everyone could play right away without too much of a learning curve.

I also got to do some sewing today - I've attached the collar and have pinned the neck facing in place. Once I sew that, all I have to do is sew the buttonholes and hem it and it's done. whoo hoo!

Tomorrow I'm the lucky recipient of a CT scan for my head. Remember I fell back in July and gave myself a concussion that took me about two weeks to recover from? My oncologist suggested that it would be good to be sure that I didn't actually do any damage to my head so we're doing a scan tomorrow. I'm actually glad that we're doing this because I've been a little worried about the length of time it took me to recover from the concussion. I'm probably just being a bit of a hypochondriac but I'd rather be sure that there's nothing bad going on in my head.

Visit with my oncologist

I saw my oncologist today. My tumour markers are hanging out at 38 - just above normal :) None of my bloodwork was abnormal or remarkable. That's all good news!

So I talked to my oncologist about my fall and subsequent concussion and she feels that I should have a CT scan done of my head. That's scheduled for September 4. She also feels that I should be having regular mammograms again so I have one scheduled for September 5.

My oncologist did a physical exam on me today and as part of the exam, she listened to me breathe. You all know that I've been sick lately and you might know that I'm not completely better. After listening to the lower right lobe and then listened to me cough (oh yes, I'm still coughing, and I'm still coughing stuff up), she told me that I almost certainly have walking pneumonia. Apparently the difference between pneumonia and walking pneumonia is that with the latter, the person can walk around and doesn't need to be hospitalized. I guess that's the "walking" part. :)

She's put me back on azithromycin and had me get a chest xray done to confirm that I do have walking pneumonia. The area she identified as being a problem is one that I've noticed because it has been feeling funny.

I tell you, I'm pretty sick and tired of being sick and, well, tired. I would love to not be tired and to not feel like crap... and wouldn't it be awesome if I could have my summer back? At this point, I'll settle for being able to enjoy my autumn.

Fun at the dentist

I got to see the dentist this morning - lucky me. They were doing their usual check when all of a sudden they said that my old amalgam fillings needed to be replaced. Sigh. I've also managed to lose my teeth whitening trays and so needed them to make new ones for me which they didn't have time to do at my 8:30am appointment.

Fortunately(?) the office had a cancellation at 10:40am so I was able to come back to have my fillings replaced and to get my trays re-done. Two fillings, one on each side of my upper jaw, needed to be replaced and so I ended up quite chipmunk-like from the freezing. I get extra freezing because it doesn't "take" very well in me. A few hours after the appointment was over I was still pretty frozen and needed to eat... let's just say that it's a good thing that no one was here to see that.

At least all that is over now and my whitening trays will be ready next week. My dentist is also getting a pre-approval for a new night mouthguard from my insurance company as my current nightguard is three years old. I asked my dentist how often people replaced theirs and she said that some replace it twice a year or once a year (!). So between that and my new fillings it's probably a good idea to get a new nightguard. Hopefully the insurance won't be a problem.

I also had to have my tumour markers and other bloodwork done today which is scheduled to be done through my port because my veins are so bad. By the time I was done all that at around 2pm, I was feeling very tired and sore so I had a brief nap. I didn't get quite enough sleep and my face was still sore and poufy so I was quite cranky early this evening.

End of my scan-o-rama

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

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

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

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

Bone scan day

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

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

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

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

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

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

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

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

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

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

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

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 :)

A whole day of non-sleeping!

I did end up joining the gym. It'll be $19.95/month forever with some restrictions: I can only go on Tuesday, Thursday, and Sunday; and I can't do the spinning classes. I can do almost all of the other classes, though. While being restricted to three days a week seems like a big disadvantage, I figure that it will be a bit easier to keep to a set schedule if I can't just put it off until tomorrow. I'm looking forward to going and working out again.

Remember that thickening in my breast where the results came back with nothing, but recommended further tests? Well, tomorrow my surgeon is doing a core needle biopsy of the area. He knows where it is and everything and so it shouldn't be a problem with him doing it. I don't expect any problems with the test, and hopefully the results will come back ok.

I was up quite early this morning because the surgeon's office called with tomorrow's appointment at 8:30am. I managed to stay awake all day - yay! Hopefully this means that the Pamidronate won't knock me out entirely :)

Oncology appointment today

We got to see my oncologist today. She had seen in the report from my surgeon that my dad had died and was very tender and nice, offering her condolences and stuff. I was touched by her compassion and humanity.

The funniest part of the visit was getting the results of my tumour markers. When I had my Pamidronate infusion changed for the port, the nurse I talked to said that the tumour marker blood draw (which was to be done later that week) would be included in the blood done on Pamidronate day. On that day, the nurse had no orders for the tumour markers, went back to check, and came back and said that we were doing some. So they did do a tumour marker test that day; the trouble is, it was the wrong test. I was tested for CA125 (an ovarian cancer test) instead of CA15-3 (my test). At least the CA125 came back normal, meaning I have no ovarian problems. That's good, because I have no ovaries :)

So, umm, we're going to re-do the tumour marker test this next week. I hope that we end up getting the right test done this time. :) I can call and ask for the results a week after the test; if they're ok, then the nurse will call me back with them and otherwise I'll hear from my oncologist herself.

In other news, the FISH test from the last biopsy came back negative meaning that my cancer is Her2neu negative. This is actually good news, because if the FISH test showed that I was Her2 positive then the cancer would be more aggressive.

The doctor found the thickening in the latest lumpectomy scar and said she hadn't had enough experience with that scar to know whether or not that there was a real thickening. She called my surgeon and they've decided that he's going to do a follow-up biopsy. My oncologist left a message on my answering machine saying that my surgeon's office would call and set up a different kind of biopsy - I assume that this means that I'll get a core biopsy instead of the fine needle one that he did before that gave no meaningful results.

I asked her what would happen if there was a recurrence in the breast and she said that the whole treatment would change. We could do a mastectomy - some recommend it, and some don't. I think that she also implied that I'd be off of the Femara and onto something else. Hopefully we won't have to make that kind of decision.

My oncologist is scheduling a CT scan of my entire chest, abdomen, and pelvic areas as well as a bone scan. We hope to have these done before I see my oncologist again in two months. We'll also re-do my tumour markers in a month.

Oh - one final thing..... I asked about the bruising over the catheter from the port-a-cath after curling. She said that I'm not to be doing any kind of really vigorous activity because that catheter can move. So if I want to curl in bonspiels, I need to skip (call) the games - something I've tried very hard not to do. And it means that I definitely can't paddle regularly on a dragonboat team. I think I'm ok to continue bellydancing and stuff as well as most of my other activities.

Overall it was a very productive 20 minutes. I really do like my oncologist and I'm so glad that I have her as my primary oncologist.

Feeling better

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

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

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

Saw my surgeon today

I see my surgeon every three months or so right now; in fact, I was supposed to see him on February 14 but what with my dad, I didn't make it to that appointment. He's going away next week and I was lucky to get in to see him before he left.

During the examination, he found a thickening in latest scar (the one from the last lumpectomy in May, 2006, where he removed the recurrence tumour). This thickening wasn't there the last time he saw me in November so he took a fine-needle aspiration sample of it and sent it off to the lab. He'll get the results in about 10 days, except of course he won't be there, so hopefully I'll get the results from my family doctor. The thickening could be nothing or it could be the cancer coming back in my breast.

This turned out to be the straw that broke the camel's (my) back. I'm still dealing with my dad's death, and my friend isn't doing well, and now there's a possibility that the cancer has come back in the same breast. Aaaaarghhhh! I started freaking out a bit. I know it's not the same as worrying that the cancer has showed up in some new organ, but it's worrisome enough as it is and I don't feel equipped to deal with this on top of everything everything.

So I did a little retail therapy. I went to Fabricland and bought lots of patterned stretch jersey and some 70% cotton/30% silk voile in both black and white and some other polka-dotted stretch satin fabric. I also bought some patterns that were on sale for $2/each. I did what I could to save money but I still spent a lot. Yes, I felt a bit better afterwards. I'd walked in a zombie and came out excited about the fabrics. After curling this evening, I washed the fabrics and I picked out a pattern and prepared it. I'm going to sew this weekend.

On Monday, I'm going to call my social worker. As well, my Spirituality and Healing group starts meeting again on Thursday and my Young Women's support group meets on Wednesday this week so I'll go to those. I feel like I need some help coping and as much as I love love love retail therapy, I don't have unlimited funds.

Lots of doctors today

I had the colonoscopy today and it wasn't so bad. I mean, it's not a lot of fun, but the worst part during the procedure itself was getting the IV in. I have bad veins and they used a hand vein so it hurt both going in and when they gave me the sedative. The sedative put me to sleep so I didn't really notice what was happening. I think I remember being uncomfortable, but those memories are hazy. The results are normal - yay!

I also saw my family doctor today and he's upping my antidepressants a bit. I had that meltdown the other day, and more recently I've cried over things that most people wouldn't necessarily cry over. Ian also said that I was very agitated and not my relaxed self when he came back. My doctor told me that I have to cut down on the things I do. If this isn't proof that I can't do everything other people can do, I don't know what is.

Intellectually, I know that metastatic breast cancer comes with a "new normal". Emotionally, I'm having a hard time really accepting this - I want my old normal back instead, please. I want to do what other people can do. I want to be one of those people that CAN juggle everything.

Realizing that I'm not that person, and that I can't do everything I want to do, is really hard. I want those things sooooo much. I know that it would be easier if I could just accept this new reality instead of fighting with it, but I'm not that good at accepting. Hopefully the increased antidepressant together with my support groups and Ian will enable me to come to terms with this.

No mets!!!!

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

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

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

Tests today

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

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

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

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

I wasn't hoping for this

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

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

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

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

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

Early Thanksgiving dinner

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

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

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

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

Have a great Thanksgiving, everyone!

Tumour marker results and doctor's appointment

I got my tumour marker results today. In June, they were 41.3, having gone up 1.8 over the previous result three months prior. At the end of August, they were 46.2, so they've gone up an additional 4.9. On October 13 last year, before the oophorectomy, my tumour markers were 48.0... so they're almost the same now as they were before. They're going in the wrong direction. They're supposed to go down or stay the same. I'm a little worried about this but not overly so.

I know, the markers haven't gone up all that much. I'm going to call tomorrow and request that tumour markers be done again before I see my Oncologist on October 22. If the markers climb a third time, well, that's an indication that the treatment may not be holding the cancer back very well and that it might be time for a change. We may need to do some tests to figure out where the cancer is growing at that time.

I had my appointment with the gastroenterologist today because my family doctor felt that I should see a specialist. The doctor today said that I probably have Irritable Bowel Syndrome, and that he can give me some pills that might work. He recommended that I use Milk of Magnesia instead of dulcolax or senokot as a laxative (needed to counteract side effects of the narcotics) because it's better for me. I guess I'll make the switch.

He also said that the chances of my having colon cancer are extremely small but that my situation is far out of the statistical norm already what with having breast cancer and all. Apparently people with breast cancer (and some other cancers) have a slightly higher risk of colon cancer as well. He gave me the choice of just treating the IBS with the drugs or doing a colonoscopy to be sure about what I have. Some people who see a lot of doctors don't like to be poked and prodded any more than necessary and so don't want the colonoscopy. On the other hand, some people who see a lot of doctors like to have peace of mind about possible medical conditions and so would choose the colonoscopy. You might have guess that I've decided to do the colonoscopy to give me peace of mind :) It's scheduled for November 22.

He said that the worst part of that procedure (for him) will be getting the sedative and painkillers right because of the amount of oxycontin that I take. The worst part for me... well, you can guess. :)

H. Pylori test today

You might remember that I'd been having stomach problems where my tummy would hurt a lot after I ate. My doctor prescribed Nexium for it and that seemed to take care of the problem until recently. When I saw the pain and symptom management doctor, she suggested that I get a test to determine whether or not I have H. pylori bacteria present. I had that test today.

It was kind of cool. You can't have anything to eat or drink for 6 hours prior to the test (although I did take my pain pills because I needed them, but I took them without water). They give you a capsule containing carbon-14 and some water, followed by more water 3 minutes later. Apparently the H. pylori bacteria reacts to the carbon-14 and rises to the top of your lungs. After 7 minutes, you breathe in, hold your breath for 7 or 8 seconds, and breathe out through a straw into a balloon. I felt bubbles when the water hit the carbon-14 :) It felt really strange.

My doctors will get the results in a week. If I test positive for the bacteria, then I need antibiotics to get rid of it. My stomach problems (which started to get worse again in May) should go away then. If I don't test positive for the bacteria then there might be something else wrong with me and I might have to do more tests. We'll see.

Tomorrow is a big day

Thank you to everyone who gave me their preference for sorting the earrings. I'll be sorting them by colour. I really appreciate your input!

I was able to get all of the first pictures and about 2/3 of the black background pictures edited. I still have to edit the ruler pictures, which shouldn't take too long. I hope to get the pictures all edited after the ultrasound tomorrow and before the appointment with the radiologist. I think I'm scheduled to have my first radiation treatment at 1:15pm tomorrow so I'll be able to spend most of the afternoon tomorrow adding new jewelry to my store. I'm pretty excited about that - I have some really great pieces that I think you'll all like :)

My sale will start sometime tomorrow - I'm a part of the JET team on etsy and we're all having a sale over the weekend. I'll post in my blog when the sale begins :) I'm actually glad that I have this sale and the new pieces to focus on because that means that I'm not nervous about either the liver ultrasound or the radiation :)

Cautiously optimistic

I'm feeling much better today about the appointment with the oncologist. I was so shocked when I got the news that everything was ok - I just couldn't believe that everything could be fine AND that the pain would be so bad. I put a question to one of my newsgroups and it seems that pain is not always a reliable indicator of cancer progression. Femara also causes bone pain, so it's possible that the pain is from the Femara and it's working. I will still get an ultrasound of the liver to be sure that I'm ok.

I've asked for a referral to a pain management specialist at the cancer centre. The pain is not under control and there's no reason for it to be so bad. Clearly something needs to change because I shouldn't have to live in pain. My family doctor is the one who does my pain management right now. His approach, when my pain goes up, is to add more long-acting oxycontin (it's supposed to be taken every 12 hours) and/or take it more frequently. Right now I'm taking 120 mg of long-acting oxycontin every 4 times a day (every 4 hours, most days). This is a fine approach at lesser pain levels but at my current level doesn't seem right.

The specialists have other drugs and techniques in their arsenal that my doctor may not know about. For example, there's a drug that reduces the pain of the tendons rubbing against the bones. I don't know that this is happening to me, but this could be causing pain in my left femur. Taking that pain away would be great!

When I talked to the people at the hospital, they asked me a whole bunch of questions about my moods over the last little while - like whether I've been tired, fatigued, stressed, sleepy, happy, depressed, or whatever. I think this is because pain affects so many parts of a person's life that when it's bad it takes over in so many ways, and they wanted to know how much of my life was affected by pain. For the first time in a while, I'm cautiously optimistic that my pain might actually be reduced. I'm feeling really good about this.

Ian and I went for the first night of a Skills for Healing retreat. We'll be talking about stress reduction, meditation, mindfulness, nutrition, and negotiating the medical maze. I think it will be good for both of us. Between Ian's dad's cancer and my own, there's a lot of cancer to deal with right now. It's weighing pretty heavily on each of our shoulders (more so Ian's than mine, of course), and the more skills we have to help deal with that weight, the better. The retreat lasts all weekend, so I'm sure that we'll each get something good out of it. It's a free retreat which makes it even better :)

Oncologist appointment

I saw my oncologist today. She was happy with my bone scan because it showed no significant change from last time (she said that there was no progression on the left, that it said later that there was no change since January). She also said that she didn't think that a change of 2 in my tumour markers was significant and hence it was nothing to worry about.

I guess there are people whose bone mets don't get smaller with hormonal treatment. I know there are people whose tumour markers mean nothing. The thing is, I just don't get why the pain would increase so much if the cancer was stable. That doesn't make sense to me. Ian has a theory that the cancer and the bisphosphonates are butting heads and that the cancer might start to actually decrease if the cancer is losing this battle.

I've insisted on a liver ultrasound just to be sure that my liver is fine. I'm sure it is and that there's nothing to worry about, but I want a scan to tell me I'm sure. I'll have the ultrasound between now and July 10th or so. I see my oncologist on July 13 and we'll figure out what we'll do then. I think the plan will be to have radiation to the sternum to kill the pain there and to keep me on the Femara.

Oh yeah, she said that the radiation oncologist didn't need to worry about getting rid of the pain because she had other diagnostic factors like scans and tumour markers. I guess pain isn't one of her diagnostic factors.

The whole appointment felt very surreal. I came out of it very confused and very upset. How can I have so much pain and everything be all right? I don't understand this at all.

I think I may be partly upset because my dad was having some tests done for some weird things that had been happening. His test results have come back normal, thank goodness, so I don't have to worry anymore. Now I have to stop worrying about me :)

Bad news

I saw my radiation oncologist today. He doesn't want to do radiation because the pain in my sternum is really the most reliable way to determine whether or not a treatment is working. If the treatment doesn't work, the pain will increase and if the treatment works then the pain will decrease.

He showed me my tumour markers as well. They were 39.5 when I had them checked in March, down from 48.8 in October and 58 last August. This month they went *up* to 41.3. That is the wrong direction. This is not good news.

Sigh. So the cancer is not being held back by the Femara and it's safe to say that the Femara isn't working anymore, if it ever did work. I see my medical oncologist tomorrow and I guess we'll have to figure out what to do next. Personally, I'd like to get my liver checked to be sure it's cancer-free before we embark on a treatment. I don't know whether it's better to check the liver via ultrasound, as I had before, or CT scan. My thinking is that a CT scan would be better suited for the liver than the ultrasound. I don't know how deep the ultrasound can get and it would have to show the entire liver.

I don't know how the Femara has failed. If it's that it no longer blocks the production of estrogen, then it would make sense to try another hormonal treatment. However, if the tumour is growing because it doesn't need estrogen anymore, well, it wouldn't make sense to try a hormonal treatment. In that case, we'd need to try a chemo to kill off the cancer cells and then maybe try another hormol treatment (or try a hormonal with the chemo).

I just don't know what to do next. I wish I trusted my oncologist more. Maybe this will be the test for me to trust my oncologist. We'll see. The saga will continue tomorrow. Stay tuned....

Bone scan day

So I had the bone scan today. A bone scan, as I'm sure you remember, has two parts: the injection of a radioactive tracer into me, which settles in the bones, and then the scan (much like a geiger counter) three hours later. They had trouble with the injection - I guess she got the needle in and then the vein disappeared, so she had to poke my veins twice. This is not a surprise, as my veins don't like to be poked.

When I came back for the scan, they said that they would do an extra close-up scan of my sternum because that was the area that was hurting. They did do this extra scan in the same orientation as the last time, on the left side of me. The top of the field was around my shoulder and the bottom was around my stomach.

But then they did another close-up on the right side of my chest. The top part of the field was at about underarm level. This means that they weren't just doing a scan of the sternum from the other side, you know? And the scan was completely unexpected; they'd said that they would do a closeup scan of the sternum, but they didn't mention a second scan.

Needless to say, I freaked out and am still freaking out. I'm scared, and I didn't think that that was going to happen since I suspected that I had more mets anyways. Now the idea that there might in fact be something going on scares the crap out of me. I don't get my test results until after I come back from Edmonton, so I have to live with this for just under two weeks. The best thing I can do is to put this out of my head until the night before I get my results back. And I will do that, but today I need to work through the fear. I hope that none of you ever experience this kind of fear - it makes my knees weak, my heart pound, and I feel like I'm moving in slow-motion.

Today we also did bloodwork including the usual complete blood count and my CA 15-3 tumour marker. I'll get those when I'm back from Edmonton, too.

The pain hasn't completely decreased. I hope that it goes away before Monday, but it's not really showing signs of doing that yet. It's still quite painful at times, although I guess it'll take some time to get used to the new dosage. I'm a little light-headed and woozy at times, too, which will be a direct result of the new dose.

The best part of today was that we worked on my display for the show on Saturday. So far, I'm liking the way things are being set up. I think I'll have less space than last time, but I think I'm using the space better. I hope that I sell lots :) If you are in the Hamilton-Ancaster area on Saturday between 9:30am and 3pm, please stop by. I have a lot of stock that hasn't been posted on my store :) You may find even more things that you like in person!

Doctor days

You might be wondering why I didn't post last night. Well, around suppertime, my back started to get really woogly and so I took a clonazepam. Bam! I was out like a light. Today I took one by accident and am abut to fall asleep. This entry will be short.

I saw my family doctor and he's increased my Oxycodone from 360 mg/day to 480mg/day. That may not seem like much, but 3 weeks ago I was taking 280mg/day. I can't believe how much the pain has gone up :( My doctor says that if my pain isn't better by Monday I have to go in and see him before I leave.

I have my bone scan tomorrow as well as my bloodwork. I get the results in two weeks.

In preparation for the show on Saturday, we're getting the display together. I decided that I wanted a black background. Originally I wanted velveteen, but after some thought at the fabric store, I decided to get some black linen-look polyester fabric. It drapes really well and has a bit of a sheen to it, making it very attractive. I still have to get all of my things priced and inventoried, too. Guess what I'm doing tomorrow and Friday? :)

If you haven't already, please have a look at my treasury - it's the best I've ever done. Enjoy! I love it so much!

Bone scan scheduled

As you can guess, I was up pretty late last night what with the airport and all. Unfortunately, instead of sleeping late, I got woken up at 10am by Ian telling me that Cheryl from my oncologist's office was calling. It took me quite a while to connect those words in such a way so that they had meaning :) Anyways, once I figured out what the words meant, I took the phone.

She was calling to tell me that the bone scan is scheduled for Thursday, June 7 with the injection at 9:45am and the scan at 12:45pm. In between, I'll do the labwork. I will get the results on June 21. Usually it takes a only week to get the results, but I won't be here a week after the tests.

I won't be here that week because I'm going to be in Edmonton then!!!!! :). I felt that I didn't spend enough time with my family at Christmas, and I really want to go back to really connect with them. I miss my parents very much and am aching to see them. I am also longing to see my aunt and my sister to reconnect with them, too. I hope to see some friends once in a while, too, but I will spend the vast majority of time with my family. No, Ian won't be coming with me - he'll be staying in Waterloo/Mississauga.

Speaking of Ian, he wasn't feeling well today :( We'd hoped to do something fun this evening, but he wasn't well enough. I expect it's the heat getting to him and I think he was a little dehydrated as well. He is feeling better now, thank goodness. I (and Ian, I expect) will be very happy when this heat breaks on Sunday.

Struck with longing

The cancer centre hasn't called with my appointment times yet for the bloodwork or bone scan. I called this afternoon and tried to find out what was going on, but all they said was that it can take a couple of days to get a bone scan appointment. I hope that they will have my appointment times tomorrow.

I had to pick someone up from the airport today but the flight was late, so I had a bit of a chance to wander around. Toronto Pearson airport has some very nice artwork. There's a gallery on the mezzanine level, even. The last time I was there the display was all about the development of the telephone. Today, they had Contemporary Art from Toronto artists. The pieces were so beautiful.

One artist, Gillian Batcher, had taken silver wire and woven it into little balls of wire (using knitting and crocheting to close it, I think). I looked and looked and looked and I'm pretty sure that the original weave is lino weave. I was really impressed with myself for recognizing and remembering that weave! There were other artists that used greeting cards as a medium for fine art; in this way, beautiful pieces of art can be available to everyone at a reasonable cost.

So many of the artists had studied things like metalwork or glassblowing or wirework or textiles or whatever in colleges in Toronto. When I realized that it was possible to study all of these techniques - even to do a master's in some of them - I was struck with a fierce longing to go and do the same time. I would love so much to be able to study these things. My heart is in crafts and textiles, and I want to go and fully immerse myself in that. I'm pretty sure it's impossible to do this while on LTD. :(

Speaking of LTD, my insurance company called today to update their records. I don't fully understand; I'm signed off until September 2008 at present. I don't completely get why they need to call me every three months and find out how I'm doing?

Called the oncologist

Oh my gosh it's hot here. I'm swollen from the heat - ick. I had rested my elbow on my leg above the knee for 15 or 20 minutes, and there is STILL a depression where my elbow was, 1 1/2 hours later. Oh the joys of living in Southern Ontario.

So I called my oncologist's office today and talked to two of the nurses. Both were named Linda. Ok, that last bit isn't relevant, but it is funny :)

Anyways, they kept asking if I'd had radiation, which got me worried because I don't want to just have radiation - I want to know why my pain is increasing. It ended up that the oncologist decided that we would do bloodwork (which probably means checking my tumour markers), a bone scan, and a referral to a radiation oncologist.

Radiating my sternum is tricky because one of the lesions on my sternum (there are two; one on the left and one on the right - the pain is coming from both of them) is in the radiation field from when I had breast cancer the first time back in 2000. I hope that both lesions can be irradiated, though, because that would make the pain go away. Or at least reduce it.

I'm sure some of you are wondering what could be causing the pain to increase, and what we can tell from the tests. If you don't want to know, stop reading here :)

So. Here are the possibilities:

1. The cancer cells are dying and giving off a last gasp of pain - shown if the tumour markers went down or stayed the same and the bone scan both shows no new bone mets and that the bone mets in my sternum have shrunk.

2. I broke my sternum - like the above, but the bone scan might show extra activity in the sternum. An xray would be needed to confirm this. This is a very unlikely outcome.

3. My sternal mets have progressed (with or without other bone progression) - shows if the tumour markers go up and the bone scan shows bigger/new spots. If there is other bone progression, my current treatment (Femara) has failed and I will probably start a new hormonal.

4. Sternal mets have progressed a little bit or not at all and there is organ involvement - shows if the tumour markers have gone up quite a bit but the bone scan doesn't show much in the way of spots. Additional scans would be needed to confirm this. This is not a likely outcome, either. If this does happen, Femara has failed and I will most likely start chemo.

Realistically, we're probably looking at either the cancer is dying and giving me pain (which means that radiation will do the trick), or the Femara isn't working to control my sternal mets. I don't know what would happen if there were no other bone mets or organ involvement; I'm not sure whether they would start me on a new treatment or not. Apparently people get an average of 9 months on Femara, and I've been on it 7 months now so it wouldn't be surprising if it no longer worked. We call this scenario "treatment failure".

I'm not going to think about what it means for a treatment to stop working.... it's a little scary, really. I know that I will need to get used to this (or at least learn to accept it), because treatment failures are the way things will go. Right now, I have lots and lots of treatments they could do next. Treatment failure is a lot harder to think about when there are no treatments left.

Test day, and more craft show thoughts...

Over on the side there I've added some blog listings for etsy artisans. There are a lot, aren't there? :) Many of these people talk about their art in their blogs, and some (like me) talk about everyday life.

Today I saw my family doctor and we confirmed that I am doing much better. Yay! He's very happy with my progress.

I also did a couple of tests today. First I had my bone mineral density test, which measures the density of my bones. Because I have no more estrogen in my body, I'm at very high risk for osteoporosis. I've been having these tests for a few years and things have been ok. We'll see how this one comes back. I also had my annual mammogram today. Well, it's my 2006 mammogram five months late, but whatever. I don't think my oncologist cares whether or not I have a mammogram, since I'm stage IV; it's like the horse is already out of the barn. My family doctor still wants me to get one each year, though. It was really painful; they called me back for an extra film on my surgery side and it hurt like crazy. At least I think they got the entire area in the film.

I'm still thinking of display ideas for the craft show. Ian suggested a stepped display, sorta like stairs for the earrings. I'm not sure. I'm reading forum posts on etsy and people have great suggestions. Some people are suggesting things like window screening and that kind of thing. The only thing is, I really do want to be able to a) keep my earrings together, b) have the stones in the earrings easily identifiable, and c) keep the price visible. The second item is very important to me as I can't always remember the stones :) I know most of them, but in a pressure situation I might not remember. I guess I could number the earrings and keep the titles and stones in a reference book. That might work.

Anyways, I do appreciate ideas for my setup - please feel free to leave a comment or email me with suggestions. Thanks :)

Happy Valentine's Day!

I hope you all had a good Valentine's Day and got to eat lots of Valentine's Day chocolate :)

We spent most of the day at various doctor's appointments. The roads were pretty bad, so it was a good thing that we had stayed in Mississauga. My first appointment was with my surgeon, and it was pretty uneventful. My second appointment was with my family doctor because I had to drop off the insurance form for him. He requested a chest xray because of the coughing and shortness of breath that I've been experiencing. I expect to get the results of that next week.

I'm sure a bunch of you are wondering what all I'm taking these days, because I've talked about various medical problems I've had. The list of stuff I'm taking is long :) I take:

• Femara (aka letrozole) and oral clodronate for the metastatic cancer. Femara removes what little estrogen is left in my body after the oophorectomy (my tumours are fed by estrogen), and clodronate builds up my bones to counteract the cancer's actions.
• Nexium for the problems I was having after eating, where my stomach would burn and hurt. My stomach no longer hurts since I've been taking the Nexium :)
  
• Celebrex for my lower back, which was injured some time ago and which hurts when I wake up. The clodronate makes this pain worse, but the Celebrex has been keeping the pain at bay.
• Oxycodone (aka Oxycontin) and occasionally Percocet for the mets pain, both in the sternum and in my left femur (although the femur spot has not been confirmed as mets). My bone mets pain is severe, and so I take the painkillers.
  
• Cipralex (aka Lexapro) for depression - it's been working - I feel much happier these days!
  
• Clonazepam (aka Klonopin) to help me sleep and to help with anxiety. I'm supposed to take 1/2 of a pill in the hopes that it won't give me bad dreams and will keep me asleep for a reasonable amount of time.
• Symbicort and Ventolin for my asthma.
• Aerius for my allergies.

I also take a variety of vitamins as well as some other things to counteract some of the side effects of the oxycodone. But that list contains the main things that I take. My pharmacist has done a good job of making sure that I don't have any drug interactions.

I made my first pair of earrings tonight!!!!!!! You can see the finished product here. I don't have a picture of me wearing them because Ian isn't home yet and I can't take a good close-up picture of me without his help, but I'll add one when I get a chance. I'm quite happy with them for a first try. I don't think all my loops are perfect loops or the exact same size, but I'm still very pleased. It took a long time to make these earrings - about4 hours - but then I'd never done it before. I did waste a few of my findings in figuring out how to do stuff. I'm looking forward to making more earrings in the next few days. :)

One of those busy and tiring days

The appointment with the genetics counselor was uneventful. She took my history again, and said that it was highly unlikely that I would test positive for any of the deviations for which they're testing. Apparently the main difference between the testing that I got before and the testing I'll get now is that they have a new test that not only compares genes to see if there is a positive variation (ie one of the known mutations is present) but they also test to see if some genes are missing. So we'll see. It'll take about 4 months to get the results. This is not a fast process.

The drive to and from the appointment was really awful because of slippery roads and snow and stuff - I didn't exceed 30kph for both drives to and from the hospital. I wish that drivers wouldn't tailgate when the conditions are bad like that and there are accidents all over the city - grrr. Between the earliness of the appointment, the fact that I didn't sleep well last night, and the drive, I was very, very tired.

I ended up sleeping for a long time when I got home, meaning that I skipped both Well-fit and bellydancing. I just felt so exhausted and I was having trouble breathing that I felt that it would be better to not do physical activities today. I think my asthma is acting up. It was like I didn't have enough breath to finish my sentences - it was a very strange experience. We've put the humidifier on because it may be the dry air making my asthma worse. If that doesn't help, I'll talk to my doctor.

Tonight after I rested, we went to a friend's place to play Werewolf. It's a slightly different game than we're used to because it has cards we haven't played with before. There was a fairly large group playing - 14 or 15 at the peak - and so we could introduce the different new cards. We enjoyed ourselves very much and had a great time, as did everyone else, I think. One of these days we'll need to host our very own big games night, but we need to get some things first (like some card tables and card chairs and that kind of thing).

Upcoming oncology appointment

I see my oncologist on Friday at 9am. That's awfully early for me, as I'm not usually up until around 11am or noon or 3pm or so :). It will be a challenge just being awake for the appointment.

I've been doing some thinking about the appointment. We'd done the bone scan because of the pain in my femur, and I think I'm going to ask for a CT scan of the femur. I don't think I need to ask for other scans, although part of me would like to know whether or not there's cancer growing somewhere else. We'll see what happens.

As I've mentioned before, I have this fear that whatever is going on is all in my head. I still think that I need to push to find out if there is something going on, thou