That's how I'm feeling. It's like I thought I was pretty much back to my old self, and then I got better, all of a sudden, and thought, Oh yeah -- this is what I used to feel like! (And I've probably even written that before; it happened over the summer too.) Maybe it was happening steadily and then I got set back by the cellulitis and .... I feel like there was some other thing that made me more tired and slow at some point besides the cellulitis, but can't remember what it was.
Anyway I suddenly feel awake, when I wake up in the morning, not tired like I wish I could have another couple of hours' sleep -- even though I didn't fall asleep before 12:30 or 1 or so, and the alarm went off at 6:30. Actually, to be fair, I'd been feeling fine when I woke up for awhile now -- but then I'd feel tired after the kids were in school, and wish for a nap -- but not enough to blow off my plans for the short # of hours that they're in school..... Some days I bike (like today,) some days I have a job or two, and try to work in a swim or a good dog walk before or after, and other days are errand days..... Yesterday I dropped Matthew at school, squeezed in a trip to Whole Foods before my physical, stopped at the library and Grand Mart after it, came home with the stuff, went swimming and came home and took the dog for a good hour walk. So that was an errand day with good use of my in between time -- Em's science club after school enabled the walk, though!
Anyway the point of that whole description was, I'm feeling well and happy to squeeze lots of things into the day to make good use of my time. For awhile there I'd come in from a bike ride and not want to walk the dog. I'd just be tired, and want a hot bath. This was even as recently as a week or two ago -- I almost fell asleep in the tub a couple of times. Now I feel awake, well -- today I came in from a 35 mile ride and felt happy and strong walking up the hills w/Pinky. (COurse I only got 20 mins of a walk in before Em came home, but I could have done the whole hour walk. Maybe I will...she has a friend over.) It's possible that it's partly because the ride was easy -- there was a slower rider today (still recovering from having been off her leg when it was broken for a few months, a few months back) and the other two of us kept waiting for her at the tops of hills. HOwever, I still think that riding in the cold and on the hills for 4 hrs would have tired me out more a month or two ago.
I also wanted to note what I wore on today's ride, because one of the hardest things about biking in the winter is figuring out how to dress to be warm enough. My usual strategy for dressing to be warm (in the rest of my life) is to just wear MORE, but outdoor exercises in the cold weather are trickier.
First, the clothes have to be made of moisture wicking material (not cotton.) Otherwise it will absorb sweat, which will then freeze. Also, too many clothes will make you cold just the same as two few clothes. They say that you should feel a bit cold when you leave your house; otherwiseyou might be overdressed. That doesn't always work for me these days, though -- I often get a hot flash just as I'm about to leave, and then I'm happy to get out in the cold, and have no idea how I'd feel without the hot flash.....and can't wait for it to pass without missing the ride!
Anyway here's what the temps were today and what I wore. When I left the house it was in the mid 20s and sunny – and when I got home it was in the high 40s and the wind was picking up -- felt like high 30s, to me, though. I wore:
Legs -- Liner under long winter grade tights, w/ lined snowpants on top,
Feet – 2 pairs wool socks, gore arctic sox, sandals, toe covers
Top – long tank, long sleeved shirt (white Gore fitted one,)
winter grade jacket (yellow PI, ) orange winter vest on top,)
Arms – warmers (okay, L arm warmer, lymphadema sleeve on right)
Hands – winter grade gloves, & brought shells from other gloves and
put them on halfway through ride (surprised me that I needed them,
but I did!)
Head – ear warmers, cowl on top, old glasses (the progressives fog more.)
No sunglasses but that would have worked too.
Also I only drank part of one bottle and one snack (banana brd w/ choc bits melted in) I biked 32-35 miles (Mc Lean loop) at a slowish pace -- or a moderate pace with breaks.
Friday, December 11, 2009
Saturday, November 7, 2009
White's Ferry Loop
Well I did it, and I didn't fall behind -- not too far, anyway. They helped. Everyone helped. It was very sweet. I thought it would be a matter of their dropping me or waiting for me -- but actually they pulled me! I didn't realize what my sore back was about until the next day. It was from drafting -- because when I draft I'm so close to the biker in front of me that I lean forward to hold the handlebars right by the brakes in case I need to stop instantly. (I wouldn't want to repay someone for pulling me by crashing into them!)
The beginning was a bit elaborate. The ride started at 8:30 from Dawson, and got almost immediately into MacArthur Blvd, a heavily trafficked street in DC -- especially at that hour, which is rush hour. I had checked in with some of the other bikers about how they handle traffic, and it turns out that they feel safer riding fast in traffic -- while I feel safer going through it slowly. That meant that I would be at a disadvantage by the time I got to the hills; I'd be behind already and no chance to catch up. (When I did this ride 2 yrs ago I wasn't worried about that. I rode slowly through traffic and the others rode the way they rode, and who cares? I was a strong rider and could catch up later.)
JOan came to the rescue (now there's a surprise!) She offered to lead the whole group on an alternate beginning which took the trail instead of MacArthur Blvd. It was the same beginning we'd ridden 2 yrs ago, when we'd ridden a century together (basically the WHites' Ferry Loop with a detour to Purcelville. This will mean something to DC area bikers.... or I guess anyone who likes playing with google maps.....) Nancy (ride leader) declined, because it had too many twists and turns after the bit on the trails -- SO Joan and I planned to meet at 8 and do the alternate beginning and meet up with the larger group after. (Joan was fine with the trafficky part, you understand. This was entirely for my benefit.)
Now you have to have a little background information to see the humor in this setup. Most people who know me even a little know that I tend to run late -- that, in fact, it takes a heroic effort on my part to get myself out of the house only 5-10 minutes later than I'd intended, and that I have clocks set fast in different parts of the house to try to help with this..... You should also know that this is one area where Joan and I are compatible, and that when we ride alone together we often start at a, um, different time than we'd originally agreed on. (That century we rode 2 years ago, for example. I seem to recall leaving a good 30-45 mins late -- but I knew I would, and had planned to meet her at her house because of it. It wasn't a big deal -- it was just us, and it was summer, so no worries about running out of daylight, as there were last Wednesday.)
So, Joan and I are tardies. Nancy, on the other hand, the leader of last Wednesday's 80 mile ride, is an early bird. The punctuality queen, I called her once. Get there early, she had said in the ride announcement for last Wednesday, and I knew she meant it.
So, when I didn't manage to get out of my house until 7:50, I knew I'd have to ride fast. Joan even sounded somber when I called to say I was leaving 10 mins later than I had planned. (It takes 20 to get to our meeting place near Joan's house.) So I hustled, but it still took me 20 minutes. And when I got there, Joan wasn't there! So I called her and she said to go ahead, she'd catch me. (She does that a lot on rides.) Well I kept seeing images of Nancy and the other riders gathering early and deciding to leave early, since they weren't waiting for us. I got to the Key bridge and under it, looked at my clock, and thought, they might have started arriving by now. I rode to the Maryland border, on the Capital Crescent trail, and thought, they're leaving now. I got to the place where I get off the trail when I'm going to see my oncologist and eye doctor and thought, they're on MacArthur Blvd by now. (I was so preoccupied with staying ahead of them that i almost missed noticing that I had gotten there in 50 mins -- it takes me an hour and 15 to 1.5 hrs to get to the doctor's office usually. Admittedly there is a little further to go on streets that I didn't go, and I am usually on my slow bike. Still, I think I was doing well!) Actually I was doing so well that Joan didn't catch me until I was done with both trails -- so I rode the first 12-15 miles by myself. She caught up just in time, actually -- just at the start of the twists and turns, which I would have had to slow down a lot to do, by cue sheet.
Anyway -- we rode a ways on our own and then checked in with the group, and decided to take a break at the top of a hill so we'd have time to catch them after we saw them coming. We found a sunny hill and took a break -- but I would not have had time to catch them withour Lynn. Lynn was riding with the group, but she's so much faster that she showed up way ahead of the rest of them -- luckily for me! (And once we started riding I found out that Lynn was using her superior speed and strength to our advantage -- she would ride ahead, pull over and park by the side of the road with her camara, and take shots of the bikers arriving! I will see if I can pilfer a shot or two for here.)
It was soon after we caught them that the hills started. I tried to pass people on the flats so I wouldn't fall too far behind on the hills...... I tried to focus on the biking and stay quiet so I could save my air for the uphill journeys. (Maybe that's why people started offering to pull me. It's a really different thing for me to be quiet. Maybe it scared them! At any rate they knew I was worried about it.)
When we got a few miles from the ferry I told Nancy not to worry about dropping me at that point; the cue sheet was straightforward, and they could wait for me at the ferry. But just when I was getting ready to ride on my own, Marla slowed down and invited me to hop onto her wheel.
This happened several more times on the ride, and I did get to talk a little..... especially at the lunch stop! And I surprised my kids by getting home a lot earlier than I had said I might.... I had said maybe 4:30-5, but in fact I got in at 3:40, only about 10 mins after Matthew.
The beginning was a bit elaborate. The ride started at 8:30 from Dawson, and got almost immediately into MacArthur Blvd, a heavily trafficked street in DC -- especially at that hour, which is rush hour. I had checked in with some of the other bikers about how they handle traffic, and it turns out that they feel safer riding fast in traffic -- while I feel safer going through it slowly. That meant that I would be at a disadvantage by the time I got to the hills; I'd be behind already and no chance to catch up. (When I did this ride 2 yrs ago I wasn't worried about that. I rode slowly through traffic and the others rode the way they rode, and who cares? I was a strong rider and could catch up later.)
JOan came to the rescue (now there's a surprise!) She offered to lead the whole group on an alternate beginning which took the trail instead of MacArthur Blvd. It was the same beginning we'd ridden 2 yrs ago, when we'd ridden a century together (basically the WHites' Ferry Loop with a detour to Purcelville. This will mean something to DC area bikers.... or I guess anyone who likes playing with google maps.....) Nancy (ride leader) declined, because it had too many twists and turns after the bit on the trails -- SO Joan and I planned to meet at 8 and do the alternate beginning and meet up with the larger group after. (Joan was fine with the trafficky part, you understand. This was entirely for my benefit.)
Now you have to have a little background information to see the humor in this setup. Most people who know me even a little know that I tend to run late -- that, in fact, it takes a heroic effort on my part to get myself out of the house only 5-10 minutes later than I'd intended, and that I have clocks set fast in different parts of the house to try to help with this..... You should also know that this is one area where Joan and I are compatible, and that when we ride alone together we often start at a, um, different time than we'd originally agreed on. (That century we rode 2 years ago, for example. I seem to recall leaving a good 30-45 mins late -- but I knew I would, and had planned to meet her at her house because of it. It wasn't a big deal -- it was just us, and it was summer, so no worries about running out of daylight, as there were last Wednesday.)
So, Joan and I are tardies. Nancy, on the other hand, the leader of last Wednesday's 80 mile ride, is an early bird. The punctuality queen, I called her once. Get there early, she had said in the ride announcement for last Wednesday, and I knew she meant it.
So, when I didn't manage to get out of my house until 7:50, I knew I'd have to ride fast. Joan even sounded somber when I called to say I was leaving 10 mins later than I had planned. (It takes 20 to get to our meeting place near Joan's house.) So I hustled, but it still took me 20 minutes. And when I got there, Joan wasn't there! So I called her and she said to go ahead, she'd catch me. (She does that a lot on rides.) Well I kept seeing images of Nancy and the other riders gathering early and deciding to leave early, since they weren't waiting for us. I got to the Key bridge and under it, looked at my clock, and thought, they might have started arriving by now. I rode to the Maryland border, on the Capital Crescent trail, and thought, they're leaving now. I got to the place where I get off the trail when I'm going to see my oncologist and eye doctor and thought, they're on MacArthur Blvd by now. (I was so preoccupied with staying ahead of them that i almost missed noticing that I had gotten there in 50 mins -- it takes me an hour and 15 to 1.5 hrs to get to the doctor's office usually. Admittedly there is a little further to go on streets that I didn't go, and I am usually on my slow bike. Still, I think I was doing well!) Actually I was doing so well that Joan didn't catch me until I was done with both trails -- so I rode the first 12-15 miles by myself. She caught up just in time, actually -- just at the start of the twists and turns, which I would have had to slow down a lot to do, by cue sheet.
Anyway -- we rode a ways on our own and then checked in with the group, and decided to take a break at the top of a hill so we'd have time to catch them after we saw them coming. We found a sunny hill and took a break -- but I would not have had time to catch them withour Lynn. Lynn was riding with the group, but she's so much faster that she showed up way ahead of the rest of them -- luckily for me! (And once we started riding I found out that Lynn was using her superior speed and strength to our advantage -- she would ride ahead, pull over and park by the side of the road with her camara, and take shots of the bikers arriving! I will see if I can pilfer a shot or two for here.)
It was soon after we caught them that the hills started. I tried to pass people on the flats so I wouldn't fall too far behind on the hills...... I tried to focus on the biking and stay quiet so I could save my air for the uphill journeys. (Maybe that's why people started offering to pull me. It's a really different thing for me to be quiet. Maybe it scared them! At any rate they knew I was worried about it.)
When we got a few miles from the ferry I told Nancy not to worry about dropping me at that point; the cue sheet was straightforward, and they could wait for me at the ferry. But just when I was getting ready to ride on my own, Marla slowed down and invited me to hop onto her wheel.
This happened several more times on the ride, and I did get to talk a little..... especially at the lunch stop! And I surprised my kids by getting home a lot earlier than I had said I might.... I had said maybe 4:30-5, but in fact I got in at 3:40, only about 10 mins after Matthew.
Thursday, October 29, 2009
Acupuncture update
I’ve been feeling for some time like the acupuncture I get in Vienna with Dr. Zhu isn’t working really. The first two times it felt like it caused indigestion. The doctor thought it must have been coincidental. This time (5th time) my digestion was definitely fine before I went there – and I felt something happen while I was lying there with the needles in. Some feeling both in my gut and in my mid back, behind it. She did have a needle in my belly. It’s not digestion exactly but it's around there. It's still bothering me. I wonder what it is! Anyway I had continued to go to her because of the insurance, even though the results of her treatment haven’t ever wowed me. But today I made an appt. to see Dr. Tien on Monday. His treatments cost way more, but they work. I’ve had 3, and felt like a million dollars the next day, every time. I don’t know what it is, but he has it, and she… I’m just not sure she’s doing the right thing for me.
In the end, if his treatments cost 3-4x her treatments, and they work, and hers don't, it's a better value to go to him ANYway. If hers don't work EVER, I can't even do math about it! It's just a waste of time to go to her -- or worse, it may be causing problems. That's where I'm at now, anyway.
------------ ----- ------------ ----- ------------ ----- ------------ -----
I've got a biking update too. (Anyone reading this interested in hearing about my biking progress, or to I babble about it too much? COurse you can always skip it if you like. I think a couple of people are still reading.....)
I reached a new milestone yesterday, my first metric century since BC treatment -- 62 miles and change. Out to Leesburg and back on the trail. I did fine, and kept up with the group. (Can I tell you, my biking is SO MUCH BETTER since the hospital visit! A nurse called me today from the hospital to check on me and I told her about it -- told her they'd better keep an eye on their vancomycin or the Tour De France people will be after it!) Anyway I did great, but there were only 2 hills, and I was careful to stay on people's wheels anytime I felt like I might be tiring, so that I would keep up instead of dropping back.
The thing is, this was a training ride for the White's Ferry Loop next Wed. That's an 80 mile ride. I'd like to ride it. I've only done it once, a little over 2 years ago. It's a lovely ride, starting in VA, getting into rural MD, over a ferry, and back to VA with a stop at a lovely café for lunch, which serves lemonade sweetened with agave nectar in the summer. HOwever -- I don't remember how hilly it is. I just wasn't worried about hills last time I rode it -- as long as there were no plummetting downhills I was FINE. GOOD at uphills, in fact; I used to catch up on the uphills after having had everyone fly by me on the freefalls. But now.... If there's a hill here and there, I'll be able to stay with the group, I think, but rolling hills will really slow me down. Rolling hills are the worst, though, because I don't get a chance to catch up. I don't want to get dropped early on and be on my own.... but I also don't want people to feel stuck with waiting for me. So -- while I bet I can DO the ride, that's my dilemma.
ON the other hand, how else to increase my lung capacity so the healthy tissue can compensate for what's been lost, but to ride hills? I have already prepped the kids about accommodating the long day I will need for the ride next Wed. Matthew will have to catch his bus that morning, because I'll have to leave by 8-8:10am -- and Em will probably come home an hour or two before me.
Actually someone told me that there may be a swimming way to increase my lung strength -- breathing every other stroke instead of every stroke. I tried it today. It's hard! I could only do it for 4 strokes at a time. So I'll keep working on that.
I'm swimming stronger, too, BTW, since the hospital. ON Sat I swam 100 lengths -- I jsut wasn't DONE after a mile! Today I got into the water a little late, only 42 mins before the whistle. I usually swim a mile in 45 -- sometimes 50 mins. But I swam it in 40 today, and kept on going til the whistle.
In the end, if his treatments cost 3-4x her treatments, and they work, and hers don't, it's a better value to go to him ANYway. If hers don't work EVER, I can't even do math about it! It's just a waste of time to go to her -- or worse, it may be causing problems. That's where I'm at now, anyway.
------------ ----- ------------ ----- ------------ ----- ------------ -----
I've got a biking update too. (Anyone reading this interested in hearing about my biking progress, or to I babble about it too much? COurse you can always skip it if you like. I think a couple of people are still reading.....)
I reached a new milestone yesterday, my first metric century since BC treatment -- 62 miles and change. Out to Leesburg and back on the trail. I did fine, and kept up with the group. (Can I tell you, my biking is SO MUCH BETTER since the hospital visit! A nurse called me today from the hospital to check on me and I told her about it -- told her they'd better keep an eye on their vancomycin or the Tour De France people will be after it!) Anyway I did great, but there were only 2 hills, and I was careful to stay on people's wheels anytime I felt like I might be tiring, so that I would keep up instead of dropping back.
The thing is, this was a training ride for the White's Ferry Loop next Wed. That's an 80 mile ride. I'd like to ride it. I've only done it once, a little over 2 years ago. It's a lovely ride, starting in VA, getting into rural MD, over a ferry, and back to VA with a stop at a lovely café for lunch, which serves lemonade sweetened with agave nectar in the summer. HOwever -- I don't remember how hilly it is. I just wasn't worried about hills last time I rode it -- as long as there were no plummetting downhills I was FINE. GOOD at uphills, in fact; I used to catch up on the uphills after having had everyone fly by me on the freefalls. But now.... If there's a hill here and there, I'll be able to stay with the group, I think, but rolling hills will really slow me down. Rolling hills are the worst, though, because I don't get a chance to catch up. I don't want to get dropped early on and be on my own.... but I also don't want people to feel stuck with waiting for me. So -- while I bet I can DO the ride, that's my dilemma.
ON the other hand, how else to increase my lung capacity so the healthy tissue can compensate for what's been lost, but to ride hills? I have already prepped the kids about accommodating the long day I will need for the ride next Wed. Matthew will have to catch his bus that morning, because I'll have to leave by 8-8:10am -- and Em will probably come home an hour or two before me.
Actually someone told me that there may be a swimming way to increase my lung strength -- breathing every other stroke instead of every stroke. I tried it today. It's hard! I could only do it for 4 strokes at a time. So I'll keep working on that.
I'm swimming stronger, too, BTW, since the hospital. ON Sat I swam 100 lengths -- I jsut wasn't DONE after a mile! Today I got into the water a little late, only 42 mins before the whistle. I usually swim a mile in 45 -- sometimes 50 mins. But I swam it in 40 today, and kept on going til the whistle.
Friday, October 23, 2009
Cellulitis
Well I meant to post an update about the acupuncture next, but...... before I got to it something else happened.
For about 2 weeks I'd been feeling a new band of tightness along the inside of my right arm. It was a lot like the post radiation roping and tightness -- kind of like my tendon was trying to turn into a rubber band. I didn't really get why I'd be feeling that kind of thing again now, but what do I know? I figured I'd pull back against it, swim it out. That worked before. SO last Fri and Sat I swam a mile each day. The tightness stopped pulling after a few minutes of swimming, but there was a redness that didn't seem to be going away. Then on Sunday there was a hard red spot on my arm in the middle of the band, just above the inside of my elbow.
So I emailed the PT I'd had a few sessions with in Jan/Feb (before we figured out that our insurance didn't cover her & I had to stop) and I emailed my radiation onc, even though it's been 7 months since I finished radiation, and described the red protrusion on my arm. He answered promptly and predictably: "Can you come in and show me your arm?" That was Monday afternoon. On Tuesday I had 3 jobs planned, and thought I'd swim in between job #2 and #3, and see the doc after the last one, at about 2:15-2:30. I warned Em I might not make it to pick her up at 3:30, after her after-school activity. Oh boy, was that an understatement!
By Tuesday morning I had decided I didn't like the look of the thing on my arm. YOu know how sometimes in the middle of the night problems that seem small and insignificant during the day feel big and ominous? Often they quiet down by day again, but sometimes for me the nighttime questions are real questions that perhaps the chaos of my daily life had been keeping away. ANyway Monday night I was massaging my red spot, thinking it was probably something the PT could rub out, when a little voice in my head said "Hmmm, it's red, swollen and hard. What could it be?" I used to interpret for my nurse friends at the clinic, when I worked as an AIDS educator, often enough that I knew what they were going to say before they said it. This thing had all the hallmarks of an infection.
So the next morning when the PT called me back, I said, "Thanks, but I think this is one for the doctor." I also called my doctor's office, and asked if I could come earlier than 2:30. A voice in my head said "If I were a doctor and someone brought me an arm that looked like this, I'd want them in the hospital on IV antibiotics." I almost packed a small overnight bag in my car, with at least my eyedrops, but then I thought, Nah, I'm not a doctor, what do I know?
I scooted in to see my doctor after job #1, at about 9:45. He came right out and met me in a room. He took one look at my arm and said "Okay, this is serious. YOu need to go to the ER." I was not happy to hear this.... I've only ever been to the ER for my kids, and always had to wait, and wait, and waaaaitttt -- the better the patient looks, the longer they wait. And I always look fine. Even when I was in labor they didn't believe me..... When I went to the hospital to have Matthew I arrived pretty sure it was time, but got delayed by the woman taking insurance info, who said, "Yeah, this is your first, right? They all think it's urgent -- but it could be two weeks!" So.... I had always been thinking I'd like to try having a natural birth, but when I got to the midwife, I said, "YOu know, I might be interested in some pain meds, actually, if it really might be awhile." And she checked me and said "Too late, just push."
So this is where my dismay about going to the ER was coming from..... but this time was different, because my doctor walked me over to the ER. (This is a great doctor -- too bad he's my radiation onc and that's over with.....you want a doctor like that all the time, you know?)
When we got to the ER the doc said to the guy on duty "She looks good, but this is an emergency." THey took me in right away. My doctor also went in and talked to someone -- gave them my history or something. What a guy!
That was Tuesday morning. I was in the hospital until yesterday at about 3pm. (Yeah, I know -- I shoulda listened to that inner voice and packed that bag....) It's cellulitis, which sounds deceptively like cellulite, but is not, as Matthew guessed, butt fat on my arm. It's an infection. It's dangerous! It might have been caused by my picking my cuticles. Yikes! On my right hand, that is, because I have no lymph nodes in my right armpit. (Holy shit, I am going to have to figure out how not to do that!) You can't have manicures on the hand attached to the no-lymph-node arm. I didn't know that, but I might have been told; I am not tempted by manicures, so I wouldn't have paid attention. However, the picking is similar, if you think about it.....
So I spent Tuesday in the ER and Tuesday night through Thurs in a hospital room. I got 250 mg vancomycin by IV every 12 hours, 5 times. Then they sent me home with a prescription for 2 weeks of keflex. I can't imagine how one little red pill a day is going to do the job of 6 hours* of IV antibiotics...... The infection doesn't look any better to me, just different -- more contained, and taking up a smaller area, but harder and firmer, so that it burns when I extend my arm all the way. (I can still do that, though -- no restrictions. I am allowed to ignore the pain -- however, I was also told that pushing through the pain wouldn't speed up the healing. Yeah, that's my usual strategy...*In all fairness I have to admit that the antibiotics are usually given in an hour each dose, so that would be 2 hrs a day. I was starting to get a reaction, though, and needed it administered more slowly, with a benadryl. Reminded me of how I had to get cytoxan. Just my body on drugs I guess -- but of a lightweight that way.
Em had a hard time with my being in the hospital, and Alan and Matthew gave up some stuff -- Alan had to cut his workday a lot, and Matthew missed a ball game because he didn't have a ride. Thank goodness he has a friend who drives; that's how he got home from his after school stuff every day! And I was not pleased initially -- I had to call work and explain that I was bailing on jobs #2 and 3 at the last minute! But then it got interesting.
They did an ultrasound of my vein to make sure there were no clots. The guy doing it was learning and the more experienced guy was right there with him directing him so I got to learn too -- and as soon as they got past my clavicle I got to turn my head and watch the ultrasound too. And then when I got to my room I had a roommate who was an elderly Spanish-only speaker. And there I was, a Spanish interpreter who felt fine and hadn't gotten to do her last 2 hours of work for the day! I worried that it would be a problem, confidentiality-wise, for me to interpret for her, but when the doctors came in and used the phone service instead of me, the only thing they had for privacy was a curtain, so I heard everything, in two languages. So I interpreted for the nurses, technicians, nutritionist, etc. (I assumed that the docs have to follow protocol.) The nurses told the next shift of nurses about my offer, in their report about the patients on the floor. It was fun.
After I got home I found an interesting thing: I had been on a bike ride on Monday, and I went on another bike ride today. (I asked, no restrictions on activity.) I had been slow and struggling to keep up with the group on Monday, and my knee had started giving me trouble on uphills. I'd had to cut the ride short -- to 30 miles, when I'd been planning to ride 40. (I'd been riding more slowly the previous 2 weeks, losing ground, but I didn't expect to find a specific cause....) I went to the chiropractor in the evening and was surprised to hear that there wasn't anything seriously wrong with my knee...... he adjusted me and gave me exercises though. But then today I rode great, no problem riding with the group for like 30 miles. (I mean it didn't even feel like keeping up!) Today's ride was a 50, but I decided to skip one of the extra loops, so my ride was 43m. That was about where I had been at with my riding until a few weeks ago, when I started getting tired and slowing down for no apparent reason.
Well who knew? Apparently an infection DOES slow you down! I think I was also waking up more tired and sometimes nauseous in the month or two or three before my cancer was diagnosed. All those blood vessels diverted...... my body missed them! I feel like these things would have had to work harder to slow me down in the past, when I was younger. (Is it harder to detect cancer in kids, I wonder, because of that? Or maybe just high energy kids?)
Anyway that was my hospital adventure. It was fun because I kind of like medical stuff -- but I would have preferred to go the week before when we had 4 days straight of cold rain; it was NICE out the 3 days I was in the hospital! (I got out for walks -- but just once a day, for less than an hour.)
I came home with 2 weeks' worth of keflex. They tell me it won't shrink down for 2 weeks, and will hurt for a month. It only hurts when I touch it or extend my arm all the way out, though.
For about 2 weeks I'd been feeling a new band of tightness along the inside of my right arm. It was a lot like the post radiation roping and tightness -- kind of like my tendon was trying to turn into a rubber band. I didn't really get why I'd be feeling that kind of thing again now, but what do I know? I figured I'd pull back against it, swim it out. That worked before. SO last Fri and Sat I swam a mile each day. The tightness stopped pulling after a few minutes of swimming, but there was a redness that didn't seem to be going away. Then on Sunday there was a hard red spot on my arm in the middle of the band, just above the inside of my elbow.
So I emailed the PT I'd had a few sessions with in Jan/Feb (before we figured out that our insurance didn't cover her & I had to stop) and I emailed my radiation onc, even though it's been 7 months since I finished radiation, and described the red protrusion on my arm. He answered promptly and predictably: "Can you come in and show me your arm?" That was Monday afternoon. On Tuesday I had 3 jobs planned, and thought I'd swim in between job #2 and #3, and see the doc after the last one, at about 2:15-2:30. I warned Em I might not make it to pick her up at 3:30, after her after-school activity. Oh boy, was that an understatement!
By Tuesday morning I had decided I didn't like the look of the thing on my arm. YOu know how sometimes in the middle of the night problems that seem small and insignificant during the day feel big and ominous? Often they quiet down by day again, but sometimes for me the nighttime questions are real questions that perhaps the chaos of my daily life had been keeping away. ANyway Monday night I was massaging my red spot, thinking it was probably something the PT could rub out, when a little voice in my head said "Hmmm, it's red, swollen and hard. What could it be?" I used to interpret for my nurse friends at the clinic, when I worked as an AIDS educator, often enough that I knew what they were going to say before they said it. This thing had all the hallmarks of an infection.
So the next morning when the PT called me back, I said, "Thanks, but I think this is one for the doctor." I also called my doctor's office, and asked if I could come earlier than 2:30. A voice in my head said "If I were a doctor and someone brought me an arm that looked like this, I'd want them in the hospital on IV antibiotics." I almost packed a small overnight bag in my car, with at least my eyedrops, but then I thought, Nah, I'm not a doctor, what do I know?
I scooted in to see my doctor after job #1, at about 9:45. He came right out and met me in a room. He took one look at my arm and said "Okay, this is serious. YOu need to go to the ER." I was not happy to hear this.... I've only ever been to the ER for my kids, and always had to wait, and wait, and waaaaitttt -- the better the patient looks, the longer they wait. And I always look fine. Even when I was in labor they didn't believe me..... When I went to the hospital to have Matthew I arrived pretty sure it was time, but got delayed by the woman taking insurance info, who said, "Yeah, this is your first, right? They all think it's urgent -- but it could be two weeks!" So.... I had always been thinking I'd like to try having a natural birth, but when I got to the midwife, I said, "YOu know, I might be interested in some pain meds, actually, if it really might be awhile." And she checked me and said "Too late, just push."
So this is where my dismay about going to the ER was coming from..... but this time was different, because my doctor walked me over to the ER. (This is a great doctor -- too bad he's my radiation onc and that's over with.....you want a doctor like that all the time, you know?)
When we got to the ER the doc said to the guy on duty "She looks good, but this is an emergency." THey took me in right away. My doctor also went in and talked to someone -- gave them my history or something. What a guy!
That was Tuesday morning. I was in the hospital until yesterday at about 3pm. (Yeah, I know -- I shoulda listened to that inner voice and packed that bag....) It's cellulitis, which sounds deceptively like cellulite, but is not, as Matthew guessed, butt fat on my arm. It's an infection. It's dangerous! It might have been caused by my picking my cuticles. Yikes! On my right hand, that is, because I have no lymph nodes in my right armpit. (Holy shit, I am going to have to figure out how not to do that!) You can't have manicures on the hand attached to the no-lymph-node arm. I didn't know that, but I might have been told; I am not tempted by manicures, so I wouldn't have paid attention. However, the picking is similar, if you think about it.....
So I spent Tuesday in the ER and Tuesday night through Thurs in a hospital room. I got 250 mg vancomycin by IV every 12 hours, 5 times. Then they sent me home with a prescription for 2 weeks of keflex. I can't imagine how one little red pill a day is going to do the job of 6 hours* of IV antibiotics...... The infection doesn't look any better to me, just different -- more contained, and taking up a smaller area, but harder and firmer, so that it burns when I extend my arm all the way. (I can still do that, though -- no restrictions. I am allowed to ignore the pain -- however, I was also told that pushing through the pain wouldn't speed up the healing. Yeah, that's my usual strategy...*In all fairness I have to admit that the antibiotics are usually given in an hour each dose, so that would be 2 hrs a day. I was starting to get a reaction, though, and needed it administered more slowly, with a benadryl. Reminded me of how I had to get cytoxan. Just my body on drugs I guess -- but of a lightweight that way.
Em had a hard time with my being in the hospital, and Alan and Matthew gave up some stuff -- Alan had to cut his workday a lot, and Matthew missed a ball game because he didn't have a ride. Thank goodness he has a friend who drives; that's how he got home from his after school stuff every day! And I was not pleased initially -- I had to call work and explain that I was bailing on jobs #2 and 3 at the last minute! But then it got interesting.
They did an ultrasound of my vein to make sure there were no clots. The guy doing it was learning and the more experienced guy was right there with him directing him so I got to learn too -- and as soon as they got past my clavicle I got to turn my head and watch the ultrasound too. And then when I got to my room I had a roommate who was an elderly Spanish-only speaker. And there I was, a Spanish interpreter who felt fine and hadn't gotten to do her last 2 hours of work for the day! I worried that it would be a problem, confidentiality-wise, for me to interpret for her, but when the doctors came in and used the phone service instead of me, the only thing they had for privacy was a curtain, so I heard everything, in two languages. So I interpreted for the nurses, technicians, nutritionist, etc. (I assumed that the docs have to follow protocol.) The nurses told the next shift of nurses about my offer, in their report about the patients on the floor. It was fun.
After I got home I found an interesting thing: I had been on a bike ride on Monday, and I went on another bike ride today. (I asked, no restrictions on activity.) I had been slow and struggling to keep up with the group on Monday, and my knee had started giving me trouble on uphills. I'd had to cut the ride short -- to 30 miles, when I'd been planning to ride 40. (I'd been riding more slowly the previous 2 weeks, losing ground, but I didn't expect to find a specific cause....) I went to the chiropractor in the evening and was surprised to hear that there wasn't anything seriously wrong with my knee...... he adjusted me and gave me exercises though. But then today I rode great, no problem riding with the group for like 30 miles. (I mean it didn't even feel like keeping up!) Today's ride was a 50, but I decided to skip one of the extra loops, so my ride was 43m. That was about where I had been at with my riding until a few weeks ago, when I started getting tired and slowing down for no apparent reason.
Well who knew? Apparently an infection DOES slow you down! I think I was also waking up more tired and sometimes nauseous in the month or two or three before my cancer was diagnosed. All those blood vessels diverted...... my body missed them! I feel like these things would have had to work harder to slow me down in the past, when I was younger. (Is it harder to detect cancer in kids, I wonder, because of that? Or maybe just high energy kids?)
Anyway that was my hospital adventure. It was fun because I kind of like medical stuff -- but I would have preferred to go the week before when we had 4 days straight of cold rain; it was NICE out the 3 days I was in the hospital! (I got out for walks -- but just once a day, for less than an hour.)
I came home with 2 weeks' worth of keflex. They tell me it won't shrink down for 2 weeks, and will hurt for a month. It only hurts when I touch it or extend my arm all the way out, though.
Thursday, September 10, 2009
Chinese Medicine
My radiation burn is back to just about normal, BTW. I saw the doc Tuesday and he was happy about that. It's still itchy, but those bumps I wanted the doc to look at were gone -- which he said is good; when the cancer returns the bumps stay. Mine were itchy.... There is still some itchiness -- got to find where I put that calendula ointment Janet gave me.....
When I was in Ithaca with the 3 day viral thing, I went to see Lenny's CHinese doctor -- because of the viral thing which I wasn't sure was viral. And I learned something interesting. She took my pulses and said she felt a liver imbalance. I thought at first that it was from all the chemo, but she said, actually she's worked with a number of breast cancer survivors, and we tend to have liver imbalances -- and SHE says that this type of imbalance predisposes you to breast cancer, and her thought is that we've always had it, or had it for a long time.
She said I need to protect my liver, and recommended I quit drinking and eating fatty heavy foods. I said okay, but I don't really eat those foods, and I wasn't drinking more than one drink a few days a week (okay maybe every day when I was in New Mexico, but usually it's a max of 2 days a week -- and often none.) So I said, sure I'll stop, but that's a little change; I don't think it will fix any imbalances. She said, yes, that's a little change; the big change is emotional balancing. She asked me about emotional traumas in my life. I couldn't think of any.
However, I have been paying attention since then -- and i do have a hard time not taking it in when the kids throw their emotions at me. I have to learn to protect myself from that. I have learned not to take it in when Alan throws his emotions around, and that took a long time, since it happens so seldom it can be quite scary. But the kids.....
She recommended meditation and yoga, and qigung, which Janet started teaching me. But I wanted something more directed, so I don't fall off the wagon. It's too important; she thinks this is the way to prevent recurrence -- and Western Medicine has nothing to offer for that except tamoxifen, and maybe bisphosphinates. The balancing thing comes at it from a different angle too. SO she said acupuncture. I would totally go to her if we lived there -- because it was so clear that she knows her stuff! So I asked if she knew anyone here, and she gave me the name of a Chinese doctor who contracts for NIH. I have my first appointment with him on Monday. We will see......
We'll see if he has the experience she has with breast cancer survivors -- I'm a little worried that breast cancer survivors may gravitate more towards a woman, and so he wouldn't have much experience with them ........ Also I know he will cost more, for starters because of the cost of living here vs Ithaca...... I hope insurance will offer something -- but I'm going to do it regardless. I will know if it works, I think. I had acupuncture once before, for energy balancing (which I imagine is very similar) and I sure felt that! Anyway my appt is Monday, and it's in Bethesda, a nice ride (yeah just what I need, one more doctor on the Capital Crescent trail!) It's just 4 miles beyond the trail.
It makes sense to me that Chinese medicine might have something to offer with preventing recurrence, where Western Med really specializes in sending the big guns when there is obvious cancer present. It really resonated for me when the doctor said "Chemotherapy, radiation, and surgery is the easy part. The hard part is preventing reccurrence." I know not everyone will agree that going through those treatments is easy from the patient's point of view -- though does express to a large extent how I felt/feel. HOwever -- she may have meant from the point of view of looking at what there is that can be done, what there is to choose from. I think that's largely why going through it was easy for me (well that and the biking.) It's important to me to do what needs to be done to fix a problem, and the solution was so clear. Now....... like she said, this is the hard part. I just hope he gets it (the bethesda doc) like she seemed to. Maybe I can see her once a year too.....
When I was in Ithaca with the 3 day viral thing, I went to see Lenny's CHinese doctor -- because of the viral thing which I wasn't sure was viral. And I learned something interesting. She took my pulses and said she felt a liver imbalance. I thought at first that it was from all the chemo, but she said, actually she's worked with a number of breast cancer survivors, and we tend to have liver imbalances -- and SHE says that this type of imbalance predisposes you to breast cancer, and her thought is that we've always had it, or had it for a long time.
She said I need to protect my liver, and recommended I quit drinking and eating fatty heavy foods. I said okay, but I don't really eat those foods, and I wasn't drinking more than one drink a few days a week (okay maybe every day when I was in New Mexico, but usually it's a max of 2 days a week -- and often none.) So I said, sure I'll stop, but that's a little change; I don't think it will fix any imbalances. She said, yes, that's a little change; the big change is emotional balancing. She asked me about emotional traumas in my life. I couldn't think of any.
However, I have been paying attention since then -- and i do have a hard time not taking it in when the kids throw their emotions at me. I have to learn to protect myself from that. I have learned not to take it in when Alan throws his emotions around, and that took a long time, since it happens so seldom it can be quite scary. But the kids.....
She recommended meditation and yoga, and qigung, which Janet started teaching me. But I wanted something more directed, so I don't fall off the wagon. It's too important; she thinks this is the way to prevent recurrence -- and Western Medicine has nothing to offer for that except tamoxifen, and maybe bisphosphinates. The balancing thing comes at it from a different angle too. SO she said acupuncture. I would totally go to her if we lived there -- because it was so clear that she knows her stuff! So I asked if she knew anyone here, and she gave me the name of a Chinese doctor who contracts for NIH. I have my first appointment with him on Monday. We will see......
We'll see if he has the experience she has with breast cancer survivors -- I'm a little worried that breast cancer survivors may gravitate more towards a woman, and so he wouldn't have much experience with them ........ Also I know he will cost more, for starters because of the cost of living here vs Ithaca...... I hope insurance will offer something -- but I'm going to do it regardless. I will know if it works, I think. I had acupuncture once before, for energy balancing (which I imagine is very similar) and I sure felt that! Anyway my appt is Monday, and it's in Bethesda, a nice ride (yeah just what I need, one more doctor on the Capital Crescent trail!) It's just 4 miles beyond the trail.
It makes sense to me that Chinese medicine might have something to offer with preventing recurrence, where Western Med really specializes in sending the big guns when there is obvious cancer present. It really resonated for me when the doctor said "Chemotherapy, radiation, and surgery is the easy part. The hard part is preventing reccurrence." I know not everyone will agree that going through those treatments is easy from the patient's point of view -- though does express to a large extent how I felt/feel. HOwever -- she may have meant from the point of view of looking at what there is that can be done, what there is to choose from. I think that's largely why going through it was easy for me (well that and the biking.) It's important to me to do what needs to be done to fix a problem, and the solution was so clear. Now....... like she said, this is the hard part. I just hope he gets it (the bethesda doc) like she seemed to. Maybe I can see her once a year too.....
Wednesday, September 2, 2009
Radiation Burn Return
Of course it turned out that I was in fact sick (surprise surprise! to no one but me, probably.) Perhaps the symptoms mimicked my taxol side effects because my body remembered them, someone said last night. (It sounded more plausible the way she said it.) Yesterday I was clearly better but not quite all the way -- today I do feel all better though. TOo bad we only have a couple more days here.....
I have another new thing, though. Not sure if this is because of the illness or the herbs Lenny's chinese doctor gave me for them (those are the two most plausible guesses so far) but my radiation burn is back! It came back MOnday.
I mean, my radiation was done on March 20th, and it left a nasty looking burn that took a month to heal after that. But still it's been all better for months -- just a little browner than the skin around it. And suddenly Monday night it felt itchy -- so i checked in the mirror and it was red and angry looking! I thought at first it must be because I had stopped oiling it for a couple of days while i was sick -- but I started again and the burn area continued getting worse. NOw it has itchy raised bumps along the upper edge and behind my armpit. I emailed my radiation onc, who is wonderful in person and always responds to my emails right away -- but all he would tell me is that I need to come in. (I knew he would, too......) SO I have to call tomorrow and schedule a visit for Tuesday -- just what I want to do with my time on my kids' first day of school..... and really, what's he going to do anyway?
I have another new thing, though. Not sure if this is because of the illness or the herbs Lenny's chinese doctor gave me for them (those are the two most plausible guesses so far) but my radiation burn is back! It came back MOnday.
I mean, my radiation was done on March 20th, and it left a nasty looking burn that took a month to heal after that. But still it's been all better for months -- just a little browner than the skin around it. And suddenly Monday night it felt itchy -- so i checked in the mirror and it was red and angry looking! I thought at first it must be because I had stopped oiling it for a couple of days while i was sick -- but I started again and the burn area continued getting worse. NOw it has itchy raised bumps along the upper edge and behind my armpit. I emailed my radiation onc, who is wonderful in person and always responds to my emails right away -- but all he would tell me is that I need to come in. (I knew he would, too......) SO I have to call tomorrow and schedule a visit for Tuesday -- just what I want to do with my time on my kids' first day of school..... and really, what's he going to do anyway?
Sunday, August 30, 2009
Aches and Pains in Ithaca
Got to Ithaca yesterday for my first visit here in 2 yrs and almost immediately started feeling achey and chilled. My first thought was, it's viral, but it hasn't moved in the last 24 hrs. Not better, not worse. Like when i was on taxol a year ago. Lenny thinks maybe it's an adrenal crash. Is it possible that could cause the same symptoms as taxol?
I don't know anything about adrenal crashes. Lenny has a chinese medicine practitioner he thinks is great at diagnosing and might be able to help with acupuncture. I'm going to see if i can get in to see her tomorrow or something -- it would be nice to at least have a sense of what this is!
I did bike my first comfortable over 50 mile ride since chemo, Friday, and they yesterday I drove here -- about 320-330 miles. I do have a little sore spot under my back/shoulder bone that started at the end of the drive, but the rest of this feels completely different.
Could it be that I couldn't deal with all the side effects of chemo when i was on it, so some of it waited? THat's happened to me with emotional things before.... I didn't know I could do it with physical things, but if it turns out I did that has kind of neat implications for keeping the cancer away -- or in check -- now and in future!
I don't know anything about adrenal crashes. Lenny has a chinese medicine practitioner he thinks is great at diagnosing and might be able to help with acupuncture. I'm going to see if i can get in to see her tomorrow or something -- it would be nice to at least have a sense of what this is!
I did bike my first comfortable over 50 mile ride since chemo, Friday, and they yesterday I drove here -- about 320-330 miles. I do have a little sore spot under my back/shoulder bone that started at the end of the drive, but the rest of this feels completely different.
Could it be that I couldn't deal with all the side effects of chemo when i was on it, so some of it waited? THat's happened to me with emotional things before.... I didn't know I could do it with physical things, but if it turns out I did that has kind of neat implications for keeping the cancer away -- or in check -- now and in future!
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