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Monday, May 17, 2010

Beautiful Busy Weekend

It was a very busy weekend. A good weekend. Just busy. Luke's Saturday night lacrosse game started well after I was already toast for the evening but I went anyway and yawned through all the hard-hitting lacrosse action. At least it doesn't hurt to yawn anymore. My mouth is feeling much better. Still a little mushy where that tooth used to be and still slightly tender but no big deal. The boys lost their game, which went very late due to some silly fighting.

Sunday started earlier than usual for us, too, because my cousin Terry Howe was in town and we invited him over for brunch. He had suggested we go out but we didn't have much time before Luke would have to be out the door to get to his Sunday lacrosse game and we would be right on his heels. So it was Saskatoon berry pancakes and bacon at our house and a nice visit with Terry on the deck before we zipped away to Luke's lacrosse game. They lost this game, too. That goalie was hard to get past! In all fairness, they were playing the top-ranked team in the league. Hopefully they'll beat them next time after they've had some time to work some more kinks out of their play.

Then, since the time felt right and I was on a role and had the necessary ingredients on hand, we invited Kevin's parents over for dinner. I was making Luke's favourite meal and so I just made a lot of it. It's that classy chicken recipe from the Best of Bridge but I make it with fresh broccoli and cauliflower instead of asparagus and I use extra curry and no cheese. I'll post the recipe here sometime. It really is delicious and I'm sure you would like it.

And then, after clean-up, I had a nice, long conversation with Berny. I can't tell you how much comfort I get from talking with someone who has been through the same awful regime. Comparing notes, sharing information, and commiserating is very satisfying somehow. We also laugh at the some of our shared experiences in the way you laugh instead of cry. It's good. Trust me.

And then ... well ... the Survivor finale! I just KNEW Russell wouldn't get any votes!

This gorgeous flower, by the way, blooms on Don and Sylvia's inherited hanging "orchid cactus". Isn't it something! Stunning! If you're interested, you can learn more about them here.

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Saturday, May 15, 2010

She rides again!

Having air in the tires makes a remarkable difference!
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Let Me Introduce You To Tiger Lily

Tiger Lily would be my bike! She didn't see the light of day all last year, oh woe is me. But she's out now. I just took her for a little spin around the block and I must say it FEELS GOOD! Next stop is the Co-op on Broadway to plump up the tires a bit.

I'm so relieved that my shoulders are good to go on the bike! I'll be testing it out this weekend and, hopefully soon, will have worked up to riding it to work.

I had a good day at work yesterday once I got going. I had hoped to do something fun in the evening like go to a movie, which we haven't done for ages, but by 7:30 my stomach was feeling a little off and I was very tired and so we rented "Pirate Radio" instead. By the way, we love the idea of the movie and there are some of our favourite actors in it, but all-in-all, it was lacking. Too bad.

My stomach troubled me a bit all through the night so I didn't really get moving here until after 11:00. It seems better now. It was probably just a plain-old upset stomach and nothing cancer or cancer-treatment related at all. I realized yesterday that having aches and pains and ills aren't always going to be related to this cancer business, just like they weren't before I had cancer. Believe it or not, that's an interesting concept to wrap my head around at this point. Hmmmm ...

Kevin is doing yard work. It's exciting to see the pots and deck furniture emerging. I can't wait until there are flowers! Soon ...

And now ... time to enjoy the day.

If you're looking for some evening sporting action, be at Kinsmen Arena by 9:00 to see the Saskatoon SWAT (box lacrosse) in action against the Calgary Mountaineers. That's where I'll be come hell or high water.
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Thursday, May 13, 2010

Safe Gardening

Thanks so much for these, Chris! I have never been one for wearing gardening gloves. I prefer to get my hands dirty. I don't worry about my nails. But I've been told that now I'm supposed to be more careful and that I SHOULD wear gardening gloves. I'm to avoid cuts, scratches and insect bites in my left arm and hand because of my "compromised lymphatic system". Even though I didn't lose all my lymph nodes, apparently I'm still vulnerable and must be careful. These will be great! I really appreciate them, Chris. Gardening is just around the corner!

Today was a pretty good day. Maybe I wasn't quite as peppy as yesterday but still substantially better in general than I have been. I won't complain.

I was able to go to my splurge club meeting tonight. Usually splurge is on a weekend night and I've even had to miss many of those because I just don't have enough "oomph". But even though this was a Thursday night and I plan on working tomorrow, I felt I had enough energy to go! That's something! It was great to hang out with my splurge pals. I notice that my jaw is a little more sore, though ... all the laughing! Not so good for the jaw but very good for the soul.

And I won for July/August! When I win splurge, I always buy something for the house that I wouldn't have bought otherwise but that I love. I find that it reminds me of my splurge pals every day. It really does. My ottoman/bench in the family room ... the mirror in the living room ... the little table in the front hall ... my kitchen butcher block/island ... all these things remind me of my splurge buddies every day. One time I bought shoes and some other things with my splurge winnings but it's not the same, to me, as something more "permanent". I don't know what I'll get this time. Hmmmm ...
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Feeling Alright!

Another good day. I feel good. My limbs feel good. I don't tire as easily as usual. I felt good when I woke up. Rested. After working for the afternoon, I didn't feel wasted in the afternoon and evening. I still had good energy. That's fantastic! I feel mostly normal! I'm not going to get TOO excited. I don't want to be too disappointed if I don't feel quite so good tomorrow. But I'm hopeful.

I had a shoulder massage this morning. My shoulders are making great progress, especially my right one. My range of motion is greatly improved from where it was 2 weeks ago. My left is coming along as well but has much further to go. The massage really helps. It still amazes me how much the massage therapist accomplishes with such slow, patient, gentle motion and manipulation.

It's exciting to see growth in the garden. Soon there will be some blooms.

Amazing that Montreal won that series, isn't it?! WOW!

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Tuesday, May 11, 2010

Girlishness

I have rarely felt "girly" through this whole breast cancer and more ordeal. I've always been girly so loss of my girlishness has been hard. Loss of hair and brows, moonfaces, buffalo humps, weight gain, limping, fatigue all make me feel a little androgynous. I want my girlishness back. Yes, wearing wigs, make-up and jewelery have helped at times but inside it all feels very phony in a way I don't think I would understand if I hadn't been through all of this. Feeling emotionally strong, I watched most of a documentary last night about a 38 year old woman diagnosed with breast cancer. She made a film about her ordeal. My heart broke for her (Did I cry for both of us? You bet I did!) ... especially hard to go through it all with a baby and a pre-schooler at home. She said a lot of things about her feelings that hit home and one that stuck with me was the uncomfortable feeling of not being "real" when covering your illness with wigs and make-up. I was glad I saw the film but it's not something I could have watched just any old time. Anyway, back to not feeling very feminine these days, it also doesn't help that I can't wear a lot of my clothes because I'm still too big and because my limited range of motion in my upper body means I can't wear anything structured.

So, today, I wore pretty shoes. Girly shoes. Heels. They don't show in this photo but they have straw wedge heels. Very girly. I need to redo my toenails, I see, but that's for another day. Now that I can walk better I feel good in heels. BONUS!!

Yes, today I'm still relishing being able to walk normally. It feels SOOO good! It makes me all the more impatient to get my arms back. And my hair.

I felt good today. Sure, my mouth is still tender but that will improve. I felt good at work and feel my brain engaging better. I don't know how to explain that part of all this, but there have been a lot of times when I've been very conscious of mental failings and limitations. My mind feels stronger and more agile now, which is good because I need that at work. It's a crazy, busy time at work right now so I'm going to try to push myself a little in that direction. I'm going to shoot for putting in more time. I know I have to do this carefully but I can't really know unless I try. And I feel ready to try.
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Monday, May 10, 2010

Upgrades and Improvements

Here are my boys with their new toys! I guess there was a two-for-one deal. Figuring this out will keep Kevin amused for hours! Already Luke has given him some tutorials.

As for me, I still don't have a cell phone. Kevin said I could have his old one and just use a phone card payment plan but then I think you lose your minutes if you don't use them within an allotted time so I don't see the point ... at this point. There have been very few times when I've thought, "Gee, if only I had a cell phone". I'd rather spend my cell phone bill on my hair, thanks! I'm anticipating hair costs. That's a good sign. Perhaps a little ahead of myself. Ha ha!

Life got back on track for me again today after falling off the map for a week or so. Back to work. It's annoying to have lost that week because I was just starting to get on a roll again and feel like I was getting a work groove going again. I don't need anymore steps backwards, thanks.

My jaw aches a bit still. Tonight, in fact, I'm feeling a few electrical type pains zapping in the back of my mouth every now and then. It's not terribly painful but it does make me nervous and reminds me that I can't be complacent about rinsing, etc. I am NOT going back to that painful place. NO WAY. NO HOW!!

I'm almost giddy with barely subdued excitement about the feeling in my legs and hips! I'm trying not to get too excited but today I really noticed the improvement. Usually at work when I get up from my desk and start moving, I do my Frankenstein walk for a little while until my limbs limber up a bit. Today there was NO Frankenstein walk. None. Nada. Not ONCE! My legs feel lighter. A lot lighter. My joints feel so loose compared to how they were before. It's hard to describe. It's so notieceable that I'm aware of it with almost every move I make. My shoulders are still frozen. I don't expect that to change. But maybe it means they'll improve more quickly. I hope so.

Tonight, after sitting for a while and making yoyo's (I have 152 so far!), I could feel a little pain in my knees and a wee pull in my right calf but still better than usual. I didn't actually limp. My knees just hurt a bit. That is a big improvement and very exciting for me. I've been off all drugs (except tooth related ones) for 9 days now. I'll monitor my joints carefully for all of May and then decide if I'm ready to start back on Tamoxifen then or not.

I can also report that I think my eyelashes are, perhaps, back to where they were before I lost them all. I didn't have such long eyelashes in the first place. I think they're the one thing that has returned to normal. My eyebrows are still very sparse. More sparse than they were before. Strange. I have a few hairs above the mid-shin line now on my legs. Not many. Just a few. And still no armpit hairs. Wouldn't it be great NOT to get those back?! Recovery is a mysterious process.
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Sunday, May 9, 2010

Amassing YoYo's

This past week while I was going through this awful dental misadventure, I was unable to read and I was unable to sew. The pain was just too awful. But the past couple of nights, I've been able to do both. YEAH! Back to growing my yoyo collection. I need a lot more than this to make a quilt of a decent size.

My mouth is still quite tender today. I don't notice it much unless I smile. Smiling is not good yet. I'm smiling inside, though, even if I look grumpy on the outside. That's why it's best that I not socialize too much yet because I'm just not down with looking grumpy.

I took a single morphine pill with a couple of tylenol at 8:30 this morning but haven't taken any of either since. I'm not one for popping pills in reality, though one might not guess that by how happily I've been gobbling them down. Without pain killers the pain is little more than discomfort at this point ... provided I don't smile. I'm carefully rinsing with warm salt water and, of course, keeping up with the antibiotics and the swish-and-swallow concoction.

My lower limbs continue to feel better. I'm cautiously optimistic. I stiffened up a little bit last night after sitting for a while but not nearly as much as usual. I've been doing good today, too. I reached a kitchen shelf I haven't been able to reach for months! That's happy progress.

Hannah and Luke both phoned today to wish me Happy Mother's Day! *sigh* I get all warm and mushy inside just thinking about them.

Luke is on his way home now from Calgary. They won their game today, too, though he's quite mad at himself. He says he can't hit the net for love nor money! He's used to playing field lacrosse where the nets are big and the goalies are small. In box lacrosse, it's the opposite. The nets are small and the goalies are decked out like michelin men! (I've added some photos here - which would you rather try to score in?). I believe it's one of the reasons why Canadian lacrosse players are so desirable in college lacrosse in the States. If they can hit the little available space in box lacrosse (which isn't as popular as field lacrosse in the States), they can be real ringers with a field lacrosse net. That's the theory anyway.

Awwww ... I'm looking forward to getting my life back this week. Last week was a total write off.

Happy Birthday, Cindy!

Happy Birthday, Mikael!

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To All Moms Everywhere ...

I've been mothered by so many people this past year, I need to wish my whole team a "happy mother's day!". I needed mothering and that's what I got in spades! Thanks so much all of you for helping me through.
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A Boat For Him! A Mat For Me!

Oh, don't you see how happy we can be!

Here are the boys with their new-to-them fishing canoe. They've pimped it out with some decals. Pretty happy boys, I think.

They got a boat. I got a new bamaboo mat for our family room. Everyone's happy.



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Saturday, May 8, 2010

Two Weeks Of Growth To Show

I know. It doesn't look much different than it did 2 weeks ago, but it is slowly ... very slowly ... getting a bit longer. The last couple of days, my hair has even wanted to make mini-ringlets at the side! Way to go, hair!! Keep Trying!!
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What A Difference A Day Makes!

The improvement is dramatic!! Holy WOW!! As today progresses, I feel better hour by hour. Even if I slump a little this evening, no matter. Feeling this good all over is such a change. And so sudden!

Last night Kevin and ventured out to Sharon and Kent's to meet up with Patty and Ron because we women had planned a sock monkey making venture. I wanted to go for at least a little while. Once I got moving, I realized how woozy I was. Dizzy. Not too stable. Probably the morphine. So I got myself seated as soon as we got there and, with Sharon's expert guidance with all things "sewing", we figured out to make sock monkeys from the rather sketchy and incomplete instructions. We didn't finish, but here's what I have so far. How exciting! One of my moneky's arms is much fatter than the other so I decided that this monkey has lymphodema. No jokes about the fluffy crotch. I just haven't sewn it up there yet. I've always loved sock monkeys but, as it turns out, only half as much as Patty! And why should we long for sock monkeys when they can't be that hard to make, right?

Despite the dizziness, I managed pretty good last night, all considered. If it hurt when I smiled, you can only imagine how much it hurt to laugh! In that regard, this was not such a good group to hang out with. It was not easy to maintain my frown. I was certainly exhausted when I got home and I slept like a rock, waking up once in the night to take some pain killers and antibiotic.

When I woke up, I had the usual post-dental pain ... maybe a little more than the usual, but still not bad and as the day has progressed, I've felt better and better, though I'm still taking morphine and tylenol along with the antibiotics because I'm terrified of returning to that pain! TERRIFIED! I'm a little nervous about running out of morphine but I really do believe tylenol will be enough to hold the mouth pain at bay now that the infection is being beat down by the antibiotics.

The other reason I'm feeling so good is that I have less aching in my bones, muscles and joints! Because I suspect that the morphine has something to do with that, too, and because I run out of morphine tonight, I've tried to do lots of house cleaning today ... because I CAN!! I can run up and down stairs ... no Frankenstein walk ... no warming up to movement ... I can get up and down off the floor without a crazy struggle ... my arms still have limited mobility but are much less painful and I can move them farther. What I notice most is that I have more strength! I really took to both bathrooms and did a much needed DEEP clean, which included getting down on my hands and knees and scrubbing the floors by hand. My reach for cleaning the tub and my strength for scrubbing with my arm extended is much improved! Quite remarkable really! Aside from a little aching in my mouth and jaw, I really feel better than I've felt in a very long time. It's almost easy to forget that I've been through the breast cancer wringer ... if I don't see my hair.

Thanks, Syl and Don, for the mini-rose bush! I haven't tried roses before and was thinking I might like to try some.

Luke is in Calgary this weekend playing lacrosse. They won their Friday and Saturday games and they play again tomorrow.  I talked to Hannah today, too, and she's walking on sunshine ... as she should!

While I was in my dark hole this past week, lots of growth emerged in the garden! It was such a surprise to walk outside today and find so much there. There will be blooms soon! How exciting!

I did have a nasty shock today when I opened the fridge to get some cottage cheese for lunch! ICK!! Right there beside my cottage cheese is a clear container of slugs!! They were moving! GROSS!! I phoned Kevin immediately to let him know how impressed I was and as soon as he answered the phone I knew it was useless because he was already giggling. He and Kevin Kaschl were out and about and laughing themselves silly as they were shopping for "decorations" for their boat. My finding surprise slugs in the upstairs fridge just made their day, I think!

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Friday, May 7, 2010

Mission Complete - One Less Tooth To Worry About

The offending tooth is gone! Not without a fight mind you, but it is gone. The dentist and the assistant marveled at the size of my roots! One broke off but it wasn't hard to fish out, I was told. The roots were each twisty and pointing in different directions making it really hard to get them out.

I spent an hour in the dentist's chair ... I got extra doses of freezing ... and was out an hour later with some extra gauze and some instructions. I was quiet shaky when I left, which is typical for me. My body goes easily into shock. No big deal. I was a little surprised, though, when a half hour later I could feel "a fainting" coming on. I'm used to that feeling, too, so I knew to get myself prone on the sofa asap. And then I slept for 4 solid hours. I took morphine and tylenol before that so a good, long sleep was the very best thing I could do for myself, I think.

I made sure I had a banana before going to the dentist and since then I've had a pudding. It takes a very long time to eat a pudding under the circumstances. It will be nothing but mushy food for the next foods. The dentist told me that yogurt would be especially good for my mouth.

I have the antibiotics to continue with as well as a prescription "swish and swallow" concoction containing nystatin, prednisone, and benedryl. This was prescribed by the doctor in Emergency and my dentist recommends I continue taking it. She explained that it would be subscribed to someone whose immune system might already be compromised because an antibiotic alone could leave such a person open to other infections. She gave "thrush" as an example. She was, by the way, able to speak with my oncologist before my appointment and they both agreed with the course of action. So all is good.

I tell you, the past week has been a total blur. All I've really done is deal with this pain. While it's the worst pain I've ever experienced, I'd still choose a couple weeks of it over breast cancer, that's for sure.

I wonder if the morphine hasn't helped with my joint pains, too, or has it just been overshadowed my my dental issues? Or is being off the tamoxifen making a difference already? Hmmmm ... time will tell ... or not.

I'm dizzy! I keep deleting the periods because they look commas. They're not commas, it's just my vision being a little fuzzy. I think it's time to lie down again.

I do have a date with some friends to make sock monkeys tonight. It might be unrealistic to hope I can still join them. But maybe for a little while.

When I'm feeling better and steadier, I'll be able to take photos again, too. Sorry my blog has been so visually dull. I've been feeling a little dull myself.
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Thursday, May 6, 2010

The Pain is Lifting. Sweet Relief!!!

Finally. Some relief!! I think the antibiotic started doing its magic this evening.

When I woke up this morning, my mouth was more painful than it had been the previous two mornings but not nearly as bad as the previous two evenings. I dedicated my day to taking morphine BEFORE things got worse. The pain stayed pretty consistently "uncomfortable" for the whole day but around 7:00 tonight, it started lifting.

Not only is there less pain, but I'm less dizzy, my hearing is improved (it doesn't sound like I'm underwater anymore), my throat isn't sore, and I can talk and eat better. YEAH!! It's good things are feeling improved before I get that tooth yanked tomorrow morning.

I'll keep you posted.

Thanks for your emails and calls, everyone! Your sympathy is much appreciated. Lori even had a tip for me that I was going to try if the pain got worse again tonight. She suggested packing my tooth with minced garlic. I've never heard of that before but I would have tried pretty much anything over this past week if I thought it might bring some relief. Thanks for the tip, Lori, but I suspect I'm going to make it to tomorrow morning's appointment without any further painful flare-ups. I'll put that tip in my back pocket for future reference.
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Wednesday, May 5, 2010

More of My Pain Saga

It's nasty when pain becomes "a saga" instead of an "episode". This is so nasty. I've never in my life experienced pain like this. It's agonizing. Excruciating. Draining.

Last night it got so bad that at about 10:30, Luke took me to Emergency. I was almost listless with pain ... or with morphine. I'm not sure. Besides making me groggy, the morphine I'd been taking since 6:00 didn't seem to be working. I was in severe pain. I was worried about the hearing in my left ear and the pain in the roof of my mouth. I could also tell that my gums back by my "dead tooth" were inflamed. I had fleeting thoughts of some infection spreading from my tooth to my brain or passing out from the pain and never waking up again. When I'm afraid to fall asleep (silly as it might be), I surmised it was time to go to Emergency.

Luke had just come home from lacrosse practice and had plans to go out with some friends but he promptly cancelled his plans and insisted on taking me to Emergency. You know what a lengthy wait that can entail, so I encouraged him to just drop me off and then go out with his friends but he refused and I thought it was very sweet of him to hang out in Emergency with him Mom for 3 hours. Shortly after getting to Emergency, I think the morphine started kicking in and I grew a little perkier, stopped crying, and was able to carry on a conversation, at least.

The Doctor said the inside of my mouth was inflamed and he put me on antibiotics and increased my morphine. He was very kind. By the time I got home at 2:30 a.m., the pain had subsided to a low simmer again ... thank, God!!!! ... and I was able to sleep. I woke at 9:00 and could feel the pain returning so I quickly took some more morphine and went back to sleep. When I got up at 12:00, I was feeling pretty good and took more morphine and antibiotics.

I needed to get my prescriptions filled and we still needed groceries, so Luke and I headed out. I had planned on getting groceries before Luke got home so that he would come home to a kitchen stocked with all this favourite things, but with the tooth issues, there were a lot of things that didn't get done as planned. By the time we finished getting through the check-out at the grocery store, I could feel the ache starting up again and I took morphine as soon as I got home at 4:00.

I was somewhat surprised, then, when the pain continued to increase. I took more morphine at 6:00. By that time, the pain had become debilitating. It was as bad as last night. I tried salt water rinsing, heat, ice ... nothing helped. It's now 11:30 and the pain has subsided just slightly in the past 15 minutes or so. I took morphine at 8:00 and then again at 11:00. I'm so tired and groggy ... probably exhausted by the pain but I'm sure the morphine contributes. I can hardly put two words together. It takes a lot of energy to form a sentence ... just to get my brain to put the words together and then to physically move my mouth to get them out. Best not to talk.

Kevin got home from Red Deer at about 10:30 and I think he's dismayed to find me in such a state and, of course, there's nothing he or anyone can do. It's so bloody miserable. I'M so bloody miserable. It really is the worst pain I've ever experienced. Hands down. I just want to sleep. Hopefully, I'll be able to do that soon. Soon. Soon.

What I've learned, I think, is to not ever let the pain get started. If I'd been carrying my morphine with me when we went to the store and took it as soon as I felt that first pulse of pain, maybe it wouldn't have taken hold. Maybe timing is everything. My goal is to hold that pain at bay all day tomorrow and until I get the tooth pulled on Friday morning. I have a feeling I won't feel so good after the tooth is removed either. A whole new adventure. Not the kind anyone wants, that's for sure!
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Tuesday, May 4, 2010

OWWWWWW ...

This pain is awful! REALLY AWFUL!!

It wasn't bad when I woke up this morning. I chose not to take aspirin and morphine just in case they did some dental work in the morning at my appointment. They didn't. But my dentist took some x-rays and saw a little bit of shadow above my back upper teeth. She then "cold tested" the three back molars and one of them didn't respond to cold at all. It's a "dead tooth", I guess. And probably infected. She said that normally she would do a root canal but the place is too awkward. She recommends permanently removing the tooth, which is the last molar at the top left. Fine with me if it will relieve this pain.

Before she can do anything, though, she said she would need to consult with my oncologist because Tamoxifen can possibly interfere with bone healing, which can then cause other problems. I told her I was off Tamoxifen right now but she still needs to check so that she can make sure the timing is okay. My feeling is that this pain is unbearable and no matter what's ideal, this tooth has to come out. That's what I'm thinking tonight while I'm in very miserable pain. I wasn't doing too badly at all during they day until about 6:00 and now I'm shaking with the pain. Or maybe it's the morphine. I'm on my 2nde dose of morphine and I've been trying both ice and heat and so far I'm still dizzy with pain.

I didn't hear back from my dentist today so I guess that means she wasn't able to talk to my oncologist. I hope to talk to her early tomorrow morning. If I don't hear from her, I'll be calling her office.

My upper gums at the back now feel inflamed and there's even a place that seems swollen on the roof of my mouth on the left side. I don't know why sores would be appearing. I can't open my mouth very far and I can't chew. This is not the optimal way to lose a few pounds, I tell you!

Wish me sleep tonight and some relief from the pain.
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Monday, May 3, 2010

A Busy Doctoring Day

It's a good thing I was able to get a decent sleep last night because I had a busy day.

I thought I might be able to get through the night without morphine but no sooner was I in bed, when the pain started to increase again and so I popped some morphine, sat in bed and read until the pain decreased enough for me to fall asleep. It didn't take too long.

The pain wasn't bad when I woke up but even after carefully slurping back some warm pudding for breakfast, the pain returned with a vengeance. Aspirin and heat brought it back down to a simmer. I didn't take any morphine, though, because I needed to drive and last night I felt faint after taking morphine.

I saw my family doctor and he checked things out in more detail. He mentioned trigeminal neuralgia but said what I'm experiencing isn't exactly how it normally presents. He thinks it still might be tooth related so I'm booked in to the dentist tomorrow morning for a more thorough look. At least now I've been able to pinpoint some of the throbbing pain in my upper back left teeth. Maybe there's something rotten in that state of Denmark. Whether all of this is related to the drugs I've been on, it's hard to say. I told my Doc that I'd gone off the Tamoxifen and his feeling is that it's the only way to figure out if that drug is the culprit and he recommends I discuss it with my Oncologist. He prescribed me some more morphine to see me through and sent me on my way.

I then met with my massage therapist. As soon as I lay back on the table, the pain in my jaw started up again. She gave me some TMJ massage and the most interesting thing to me was while I was on my back, she's standing at my head, she laid her hands on my face with her thumbs flat between my brows. With the very lightest pressure and shifting of my skin upwards, I felt the pain in my jaw just ebb away. It was so soothing! Very surprising. Kevin and I speculate that the release was through my sinuses. During my "jaw pain" research, I found lots of cases where sinus medication cured severe jaw pain. Something to do with pressure from the sinuses on a nerve. Anyway ... during the remainder of my treatment, I felt no jaw pain at all. She even put on a rubber glove and massaged my teeth and gums. I say "massage" but it was more like "touch" ... the gentlest of pressure and slight shifting. No real movement.

Then she massaged my shoulders ... or more like "manipulated" my shoulders ... more aggressively this time I think. It was tender at the time but it felt much better after. She encouraged my breathing exercises because deep breathing can act like a lymphatic pump which can keep my restricted lymphatic system moving better. I'm to breathe in to a count of 6 and then out to a count of 6. Try it. It's good for everyone, you know. This massage has been such a good idea. Thank you to those who encouraged me to try it.

Right after that, I went to the Champion Centre for bloodwork. I have such tiny, rolly veins, they really don't like dealing with me. Two pokes later, the nurse was able to navigate into a vein. I assured her that if it only takes two pokes she can pat herself on the back and consider it a job well done. Whodathunk I'd be so relaxed about multiple pokes. I've come a long way, baby.

Then ... the oncologist. Kevin was with me so I'd have some back-up and a second set of ears. Thanks, Kev. It was a good discussion and I got some answers and, even better, I felt good about the information I got. It made sense to me and was reasonable.

He said that it can take 6 months for the effects of Arimidex to leave one's system. I've been off Arimidex for 5 months. Tamoxifen can cause bone and joint pain but not so severely as Arimidex, so he can't say whether or not my continued joint issues are related to the Tamoxifen. He doesn't think my jaw problems are caused by the Tamoxifen, but he can't be certain. We talked about my estrogen levels and he explained that the benefit Tamoxifen provides isn't just in reducing estrogen. Based on my pathology and my tumour being so big (3 cm) and at 100% estrogen, he thinks it is in my best interest to try to continue using the tamoxifen. It can improve my odds of not getting a recurrence by 5 to 10 per cent, he says.

I asked him about the osteoporosis drug that had been compared to Tamoxifen and he said that until further studies are done, we can't know if it will help reduce recurrence rates because it has only been studied as a preventative drug, meaning "preventing breast cancer in the first place for high-risk women". I understood that about the study but I wondered if, since the Tamoxifen is considered preventative for both initial and recurrent breast cancer, the osteoporosis drug might be in that same class. The Oncologist said they just can't know that until it's tested. I understand. It's an unknown at this stage. He also told me that my bone density had tested very good. In other words, prior to starting Arimidex, my bones were strong and normal. That's good to know. I hope they still are. I don't know when I next get them tested. Probably in a year.

I asked him about Vitamin D as a preventative measure. Did you see the little bit about Vitamin D being preventative of breast cancer in today's Star Phoenix? I've been reading about that for some time. The Oncologist said that he thinks Vitamin D WITH Tamoxifen is probably beneficial but that it doesn't REPLACE Tamoxifen. I understand.

I told him that I'm seriously considering going off the Tamoxifen because of all the joint and bone problems I'm having. He gave what Kevin and I both feel is sound advice. He suggests that I go off Tamoxifen and every other thing I've been taking for a month and see if there's any improvement. If there isn't, he suggests I go off for two months. Even though it can take longer than that for the drugs to clear one's system, he doesn't recommend I go off it for longer than 2 months. Then, her suggests I go back on Tamoxifen for a month and then, one at a time, start re-introducing the other supplements I'm on. That will be the best way to see if the Tamoxifen or, perhaps, something else is causing me some problems. I think that's sound advice and at least it's trying something. It might prove insightful. It might not prove anything. But it's worth trying. I'm satisfied with that and was very happy with my Oncologist and his conversation with me.

So now I'm home. I took my morphine now that I know I'm not driving and can afford to sleep ... it does make me sleepy ... more like groggy. I've had a banana and a pudding and will sleep for a while. I have a date with some soft, baked beans and scrambled eggs for dinner and then ... and then ... the most exciting thing ... picking up Luke from the airport!!! I'm glad to be able to manage this pain better before he gets home. I didn't get all the things done that I'd hoped to before Luke gets home, but his room is ready and that's the main thing.

And that's been my eventful day. I don't wish you any such days.
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Sunday, May 2, 2010

Tamoxifen Vacation - Day 2

By the way, I couldn't bring myself to take Tamoxifen last night. I really can't say it has anything to do with my jaw pain or the rest of my bone and joint issues, but ... I just couldn't do it. I'm not taking it tonight either. I'll be talking to my Oncologist about this, of course.

Stay tuned ...
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Pain Management

A little bit of Doctor on the phone
A little bit of napping while I'm prone
A little bit of morphine gets me through
A little bit of aspirin - need that, too
A little bit of pudding through the day
A little bit of heat makes things okay
A little bit of research for the soul
Good riddance to the pain is still my goal

Today has been a day dedicated to pain management.

Last night my pain subsided to a low simmer at about 2:00 a.m. so I headed up to bed. I no sooner got to the top of the stairs when the pain picked up again. Back downstairs to apply heat to my jaw until there was another window of sleep opportunity at 4:00. It helps to be exhausted. I then slept until 11:00 this morning. When I woke up I was afraid to move a muscle because the pain wasn't the excruciating, radiating type - it was more specific to my left upper and lower teeth and then only when touched. But, of course, I had to get up to pee. Damn! Within 15 minutes of being up, the pain started again in my jaw.

Kevin suggested I call our doctor. After a chat and question and answer episode on the phone with him, he felt it was a dental issue and that without having had dental x-rays done (yesterday they only looked at my January x-rays, tapped my teeth and did some feeling around). He wonders if it might be an abscess or something like that. He also thinks that the Tamoxifen and/or Arimidex could be the cause or an exacerbating factor. He upped my morphine for pain and recommended high doses of aspirin to get the anti-inflammatory benefits since I can't take Advil. I have an appointment to see him tomorrow morning.

Chewing at all is painful so I've had some pudding today and some mushy cooked vegetables and some cheese... all at room temperature. I have some mushy fruits for tomorrow.

Being able to at least better manage the pain today makes a huge difference. The pain is nothing short of excruciating - the worst pain I recall ever having - and worse for lasting so relentlessly. The morphine makes me a little woozy ... faint, in fact ... but only for a little while and then I sleep a bit. I've been a little short on sleep so that's a very good thing. I read that deep breathing can help because a shortage of oxygen can acerbate the problem. I think it's common when experiencing intense pain to hold one's breath and breath shallowly. I think the slow, deep breathing is helpful. I also make a point of thinking about the muscles in my face and neck and trying to make them as loose and relaxed as possible. Kevin picked up a really good heating pad ... one that heats in the microwave ... and it has been quite soothing. At first I thought maybe it was good just because it made me feel like I was doing something but I really do think the heat against my jaw, ear and throat really does bring some relief. I've avoided much talking. Moving my jaw is best kept to a minimum. Talking to Hannah on the phone tonight, though, was wonderful!

So ... tomorrow ...
1. Family doctor at 9:30. Talk about teeth and jaw pain and also get his thoughts on going off the Tamoxifen. I must remember to print out research on Tamoxifen vs Raloxifene (an Osteoporosis drug) from here, here, here, here, or here. I just read, though, that while Raloxifene might have fewer possible horrible side effects, it might cause more bone and joint pain than Tamoxifen. Hmmm ... damned one way or another it looks like. Here's the link to the primary research source, "The Use of Tamoxifen and Raloxifene for the Prevention of Breast Cancer", Cancer Prevention II, 2009. One of the more "layperson friendly news articles about these drugs is here. Sorry for so many links - you don't need to look at them all - but this helps me in case I need to go back and see where I got my information from.

2. Massage Therapist at 11:30. Talk to her about jaw pain. It was one of the questions on the form I completed at my first visit. Maybe she has some thoughts on how to jaw relieve pain through self-massage. Maybe she can tell me if the nerves in my neck are a contributing factor.

3. Bloodwork at 1:15. I hope they check my estrogen levels.

4. Oncologist at 2:00. I have a lot of questions for him as discussed in an earlier post and now I have questions about my jaw and teeth and the possibility of the drugs causing the problem. Remember to take some print copies of the Tamoxifen and Raloxifene studies.

5. Dentist - if I can get an appointment later in the afternoon.
A full day of medical appointments. PLEASE let there be answers and relief!!
I don't want to be like this, especially when Luke gets home tomorrow night.

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Saturday, May 1, 2010

Not a Rain Delay ... A Pain Delay

I would have blogged yesterday except that for the past 24 hours I have been in unanticipated severe pain! Pain in the left side of my jaw and my teeth. It's been awful. The worst pain I think I've ever known. I now understand why someone would want to get the pliers and yank out their own teeth! If, by chance, you have any insider knowledge on how to deal with this kind of pain, PLEASE SHARE!!

I can't even guess why it started. I had experienced some jaw pain in November or December and I saw my dentist about it. But since then ... until now ... I haven't had any jaw pain at all. I got a mouth guard in March but because I hadn't been having any jaw pain since a few months before that, I haven't even used it. Why fix what's not broken, right?

Anyway ...

I got through the conference experience okay. Some ups and downs but then home okay. We got home late Thursday night. I had a good, long, sleep in my own bed, sleeping until almost noon. Then, still tired, I decided to stay home for the rest of the day. I stayed in my pj's until mid afternoon and then I had a soak in epsom salts. I hadn't soaked in salts for three days and I was due. I was quite achy. I planned on just hunkering down for the night but then an opportunity arose to see my nephew Josh and his girlfriend, Noelene. Kevin and I met them and Darrel and Russel at Nutana Cafe for dinner and then we came back here to visit. At about 10:00 there was an unexpected knock at the door and there was Mom! Qu'elle surprise! She was just as surprised to be here. She and Gary had been in Rosetown and then he had a little episode that kept him in the hospital in Saskatoon overnight, so Mom stayed here.

I went to bed at 11:30 and almost immediately ... right after I laid my head on the pillow ... my jaw started to hurt and it got bad very quickly. I took some tylenol and sat up waiting for it to work but it didn't really work. I took more tylenol and ended up awake on the couch until 6:00 a.m. I tried hot compresses ... massage ... as much jaw relaxing as I could ... I soaked in the tub with my jaw submerged. Nothing helped. Finally, through exhaustion and while the pain was in "simmer mode", I did fall asleep on the couch until 9:30 and then I went up to bed and was able to sleep for another couple of hours. When I got up, the pain was at a very low simmer but after breakfast it got much worse again. I called my dentist's office and got in before noon to see a dentist ... not my dentist ... who feels that the pain isn't being caused by a problem with my teeth and because the pain isn't happening while I'm asleep, she doesn't think it's because of clenching or grinding and my teeth don't look like they've been "ground". She thinks it's either nerves or the medication. She told me that chemo drugs, including Arimidex and/or Tamoxifen, frequently cause problems with jaws. She sent me home with some muscle relaxants, keeping in mind that I'm allergic to Advil (Ibuprofen), which would have otherwise been the first line of defence.

I'm disappointed that the muscle relaxant hasn't really helped significantly. Sometimes the pain flare up and is severe and the rest of the time it's at various levels of "simmer". It hasn't gone away at all. I was able to sleep for another couple of hours this afternoon, though, which I needed. Still terrified of impending pain, Kevin scored me some morphine. I would not normally even want to try morphine but this pain ... I can't tell you how awful it is ... the WORST. The VERY WORST! I eagerly swallowed a "fast acting" morphine pill almost 2 hours ago but, sadly (and to my horror), I can't feel any improvement. The pain is still moving back and forth between "simmer" and "near boil". I'm so nervous about the night ... but am trying to keep my jaw relaxed.

You know the pain must have been awful when I opted to sleep through the first half of Luke's last lacrosse game! I caught the 3rd period and missed the 4th while I was at the dentist. I did, however, get to hear the sportscaster announce Luke's goal in the 3rd period! YEAH! The game went into overtime and Bellarmine came out the winner! AWESOME! A great way to finish their season. Luke phoned later and he was pretty pumped about the win. He said it was the most exciting college game he's ever played in. I think the atmosphere had something to do with it, too. They played in the Ohio State University football stadium which holds over 100,000 people. Luke said it was AMAZING! Ohio State University is only 3 hours from Louisville so the team was able to get back home this evening where I'm sure much partying ensued, it also being Derby Day in Louisville. The whole city goes crazy during derby! And then he flies home on Monday.

About the conference ... it was frustrating to have such trouble sleeping the first night there. I hardly slept at all. And for no particular reason. I'm not normally "a princess" about such things (sorry for that revelation, Meghan) and the bed wasn't uncomfortable. I had a bit of frustration with the pillow. I often flip my pillow in the night to get the cool side but the hotel pillows didn't have any "cool side". What's that about? I use a feather pillow at home and these were synthetic pillows. It seemed like they held the heat from my head right through. That caused me some aggravation. Despite my lack of sleep, I managed to get through most of the following day but then went to my room mid-afternoon and stayed there for the night. I napped, relaxed, had dinner in my room (I passed on the conference dinner because it would have meant a bus ride and no opportunity to come back to my room if I felt I needed to). I slept quite well that night except for, in the middle of the night, waking up with a horrible pain on the inside of my right knee. It hurt so badly. It woke me up a couple of times in the night and the next day it made it very painful to go from sitting to standing or doing stairs. I can think of no reason for my knee to suddenly start hurting like that ... especially to start in the middle of the night. It's still bothering me a bit but has benefited, I think, from my giving it a rest for the past couple of days.

Still ... isn't it odd ... the knee ... the jaw ... the pain ... no evident reason for either? I really do wonder if it isn't the drugs, though I can't be sure of course. If this had to happen, I'm glad it's now, before I see the Oncologist on Monday. I suspect the Oncologist won't be able to provide any real satisfaction on these matters, but I will hope. It makes me all the more determined to go off the Tamoxifen. There is some recent research published indicating that a drug commonly taken for osteoporosis reduces the risk of breast cancer. I don't know if the their referring to initial breast cancer or recurring breast cancer or both. In the study, it was compared to Tamoxifen and while Tamoxifen proved to be better at preventing breast cancer, the osteoporosis drug was preventative to a slightly lesser degree but with the benefit of no real side effects. The study concluded that despite the side effects, Tamoxifen is the better drug for the purpose but the researchers also suggested that women be given the information so that they could make the decision for themselves. Given my experience, think I might be a good candidate for the osteoporosis drug. I want to talk to my Oncologist about that and I really hope he's supportive of it.

The photo, by the way, is one Noelene took. Both Noelene and Josh are pilots in the great, white north. They made a trip to Alert, the northernmost inhabited settlement, and this is a photo of the northernmost Steinway! I find that hilarious and love the photo. Click on it to see a larger image and then you can read the text better. Noelene showed me lots of great photos from their northern life. She made some really great video and photo montages, too. She made them initially to give her family some idea of what she does and here she lives. Her family is in South Africa and she has a sister in Japan so Northern Canada is about as far from them as one could get! I've never been so far north but I'm certainly more interested after seeing all Noelene's and Josh's photos!

Happy Birthday, Cheryl!

Wish me a good night's pain-free sleep, everyone!

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