Archive for the 'health' Category

17
Oct
09

Catching Up

We’ve been doing a lot recently – some fun, some not so fun, but nothing bad ;-}

Most importantly, Brian had knee surgery yesterday, and everything went fine. He’s walking around no problem, and is ready to try dropping the prescription pain meds and going over to acetaminophen or ibuprofen. The surgeon came out to talk to me after he was done, and said that Brian’s torn cartilage was some of the worst he’s ever seen – he couldn’t believe that Brian had been able to go so long without having surgery. I said “Well, only since June . . .”, and the surgeon said “Oh, no, it’s been damaged for years – the torn edges were rounded from long-term rubbing together. There was some newer damage that must have been from June, but I was able to trim everything up so his knee should work better than it has for a long time.”

Brian vaguely remembers a backpacking trip back in his 20s where he twisted his knee, but kept walking on it (didn’t really have a choice). It was painful at the time, but not incapacitating. Either he’s completely impervious to the kind of pain that the surgeon expected him to have, or the damage was situated such that it was not interfering with the movement of the joint, and thus not causing a lot of pain.

In addition to the torn cartilage, there is a worn area, but the surgeon felt it wasn’t a problem; and the anterior cruciate ligament is partially torn. My understanding is that it will stay partially torn, but that it should continue to function just fine unless he does something that causes it to tear completely.

Brian doesn’t remember anything specific he did in June to cause further damage, although he was doing some planting in the backyard which involved kneeling, and it was shortly afterward that his knee started bugging him. He ignored it for a while, and it seemed to get better, but then it would get painful again and he would ignore it again until it seemed to get better, and so it went for two months. Finally, he realized that it was not just going to go away before our trip to Orlando; so he went to see our pcp, who sent him for x-rays and an MRI; then referred him to the surgeon. We were concerned that the surgeon would tell him he needed to be on crutches, or even cancel the trip – can you imagine doing Disney on crutches? Instead, the doctor just pulled an ounce or so of fluid off the knee (said it was about 1/3 of what was in there), and gave Brian a cortisone shot. With ibuprofen, Brian had almost no problems with the knee on the trip (about which I’ll write in another post).

So all’s well with Brian and his knee.

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25
May
09

Crawling out from under

In this case, out from under the weight of chemo and its side effects.

Because of the pneumonia on top of the chemo, and how wiped out I was, I ended up taking 5 weeks off work, basically all of April plus a little bit of March and May. I spent a good portion of that time sleeping, and pretty much didn’t leave the house at all. Brian ran any errands that needed to be run, and I read when I wasn’t sleeping. Hooray for online grocery shopping with home delivery, and for Dinners Ready!

Back before I got pneumonia for the second time, Brian and I had planned a celebratory trip to the coast for the beginning of May – we hadn’t been able to properly celebrate Valentine’s Day, our 12th anniversary in March, or my birthday in April; and we wanted to celebrate the end of my cancer treatment. So we made reservations for three nights in Cannon Beach, the 1st, 2nd, and 3rd of May, at the Tolovana Inn, just two weeks after I had my last chemo treatment.

On the 1st, we packed up ourselves and Robin and headed to the coast. We had lunch at Camp 18, and checked into the Inn around 2:30. Our room was on the third floor, and so Robin had his first experience with an elevator. He was fascinated by the opening door, cocking his head, and stretching his neck to get a look at the inside. He walked in with no hesitation and sat down on command, but when the door started to close, it rattled and clanked and freaked him out so that he tried to back away from it as far as possible. The movement of the elevator itself didn’t seem to bother him, and by the end of the weekend, after we started rewarding him with treats for sitting and staying sat while the door was closing, he got over his worry and was perfectly fine with it. The noises of the elevator moving and the pings at each floor made him tilt his head in interest, so all in all, his first experience riding an elevator turned out to be a positive one.

Our room didn’t have a bedroom, it had a murphy bed in between the kitchenette and the living room. It was pretty comfortable, but I kept stubbing my toes on it when it was down.

We didn’t do huge amounts of stuff, because even though I was starting to feel better and the chemo side effects were diminishing, I was still pretty much a lump of pain and exhaustion, only with brief spurts of energy. Happily, my sense of taste and smell were well on the way to getting back to normal, so our meals were enjoyable even though I didn’t have much appetite. Each day we took Robin down to the beach to let him run around – he loves to run on the beach, so Brian would throw a stick for him or chase him around, or we’d get him to run back and forth between us. On Saturday there was a major wind/rain storm (same as in Portland), and the wind was blowing so hard that it was parting his hair on his side – fortunately, since I had so little energy, we were only spending 15 or 20 minutes on the beach at a time, so we were on the way back to our room when the rainstorm started. It was nice and cozy in our room watching the heavy rain blow sideways; but kind of creepy listening to the wind screech and howl through the front door, and clang something on the roof.

Other than that, we took a brief turn around the downtown area, windowshopping and stopping for lunch – Robin got lots of attention and several people wanted to take pictures of him; Saturday night we went to a musical put on by the local community theatrical company (quite fun!); had a nice romantic dinner at Newman’s at 988; played cards and word games in the room; read; napped; and just generally relaxed. We drove home on Monday the 4th.

Tuesday the 5th I started back to work half-time – that first week, I came home and took a couple-hour nap each day, and still slept through the night.

As I was going through my e-mail inbox that first day, I came across an e-mail from my friend and co-worker Jenny – she’d once again set up a team from work called “Supporting Julie” for the annual Making Strides for Breast Cancer walk on the 9th of May. Brian signed up to walk, and I went with him, although I wasn’t up for actually walking. Many of my friends from work came – Leah, Carrie and James, Kristen and her husband Bill, Jenny and her family (including her in-laws, who were nice enough to go walking on their vacation!), and Becky, who started at Schrodinger just before I started medical leave, so I haven’t gotten to know her yet – wasn’t that sweet of her to walk for me? The company I work for is called Schrodinger, and the team t-shirts always feature the name of the team and the company name if there is one. This year, the way they printed the shirts, the team name came out looking like this: Supporting Julie Schrodinger – all on one line, so it looks like the team was supporting Julie Schrodinger ;-} Thank you, Jenny, for taking the time to organize the team and to walk for me! I waited at the plaza that was both the beginning and end of the walk, and had a nice little nap while I waited. It was a beautiful day, and Brian took Robin on the walk – Robin had the usual freakiness about walking on the Broadway Bridge (it’s very noisy, and shakes and rattles from the traffic – heaven forbid that a big truck or bus should pass over while he’s on it!), but other than that he enjoyed the walk, and all the attention he got – one lady came over to pet him at least 4 times over the course of the morning!

I worked half-time again the next week, and it was better – I didn’t end up having to nap each afternoon once I got home, although it was tempting.

The weekend of the 16th/17th we spent in Tacoma – way back months before, we had purchased tickets to the Fleetwood Mac show at the Tacoma Dome (I actually bought insurance on them in case I wasn’t well enough to go, knowing it would be just a month after my last chemo). We had planned to leave Robin with our friends Sharon and Gary, but when I called my 93-year-old aunt to see if she was going to be in town for a visit, she not only insisted that we spend the night with her instead of at a hotel, but that we bring Robin, and she would dog-sit while we were at the concert. We got there around 2:30, and Robin just went nuts when he saw Aunt Julia – he remembered her from previous visits, and really thinks of her as part of his extended herd. We had an early dinner, then Brian and I headed off to the show – she only lives about 15 – 20 minutes from the Tacoma Dome, so it was no problem to get there, and traffic wasn’t too bad. The show was awesome – Lindsey Buckingham’s voice and playing was as good as we expected (we saw him solo in Portland a couple years ago, so had a pretty good idea what to expect); John McVie was the quiet stalwart he always is; Stevie Nicks was her usual lacy, floaty self, but I don’t think her voice has held up as well as Buckingham’s – she no longer was hitting the high notes on her songs, opting instead to harmonize with a lower note, which was kind of disappointing; but for me Mick Fleetwood made the show. I’d seen him in 1993 or ’94 with Fleetwood Mac, although neither Buckingham nor Nicks were touring with them – he was incredible then, and he was incredible this time, also. He is so into what he’s doing, you can just see it on his face, and he’s obviously having a blast. Our seats were good, but low enough that we couldn’t see him over the drums, so I found myself watching the screens a lot in order to watch him play. Wow – he’s intense!

When we got back to Aunt Julia’s, she said that Robin spent the first hour sitting and watching the front door, and both times he asked her to go out, he wasn’t interested in going potty, but wanted to go in front to see if we were out in the car. He spent some time lying in the guest room where our suitcase was, but then came out and lay down against her feet and they spent the evening watching TV. We chatted for another hour and watched part of Saturday Night Live before heading to bed. Sunday, we slept in, had a lovely breakfast and visit, then headed home. I napped a good portion of the way.

Last week I bumped my hours up to 3/4-time, and the first day I worked from home, which was good, because I was so wiped out I needed a couple hour nap once I logged out. The rest of the week went pretty well, and although I was tired, I wasn’t exhausted, so my stamina is slowly coming back.

Friday we had my one-month follow-up with the oncologist. He started me back up on the Femara, the anti-hormone treatment – I’ll be taking it for about 5 years (he said by then they’ll probably have a study that shows that 10 years is even more effective, so don’t plan on stopping then. . .). His only real concern was that since I’m still having muscle and joint pains that I might get worse because that is also one of the common side effects of the Femara. I don’t remember having a lot of problem with that – maybe some when I first started, but I don’t think it was too bad. I started taking it again on Sunday, and so far it isn’t getting worse, so hopefully that won’t be an issue.

He also said that I could get my port taken out any time – I had to wait at least one month post-treatment because the Avastin can cause bleeding problems and wound-healing complications. It’s an in-office procedure for the surgeon, so even though I’ll probably have to take a mild sedative, it’ll only be a local anaesthesia, and I can just take an afternoon off work to get it done.

Other than that, I asked him about my vision – I’d noticed that I was having some vision change during the treatment, and was having trouble reading the computer screen – he said that any chemo-related vision change should be gone for sure in 3 months. It’s definitely been getting better, but my lenses are getting old and the coatings are coming off, so I need to get new glasses, and wanted to make sure that I didn’t get my vision tested while there was still some chemo-related effect.

My peripheral neuropathy has been diminishing significantly, to the point where I haven’t been noticing any numbness or tingling, although the motor control is still not back to normal. I decided to stop taking the Glutamine, and took my last dose Saturday – as of this morning (Monday), I’m starting to feel some numbness and tingling in my fingertips again. Guess I’ll keep taking it for a while, although I think I’ll start with a lower dose and increase it if that doesn’t take care of it.

This weekend we have just been lazing around the house, relaxing, playing with the dog, and enjoying the weather outside.

So there’s the update – I’m caught up, and believe that with my stamina starting to increase, that I’ll probably be better about posting. No promises, but I’ll try!

18
May
09

Here yet!

I’m back at work and exhausted, which is why I haven’t posted for such a long time. Besides exhausted, I’m feeling much better, with my other worst symptom being the muscle/joint pain – Tylenol usually keeps it under control during the day, but I’m still needing something stronger at night.

I will post again, hopefully this weekend.

23
Apr
09

One of these days . . .

. . . I will not only not feel yucky (that’s a technical oncology term, I’m sure), but I will actually start feeling good, instead of just feeling less bad.

This last chemo hit pretty hard – I’m still having some intense chemobrain moments, although they’re getting farther apart. The normal stomach/intestine action going on; the pains are pretty bad (I’ve had to use “the good stuff” to get any sleep since Monday); the insomnia when I’m not in pain is moderate; the fatigue seems excessive (presumably related to anemia); but the worst thing I’ve got going is the peripheral neuropathy.

It’s hard to type because my fingers don’t really want to do what I tell them to do, and I make a lot more mistakes than usual. The tingling and numbness is the obvious part, pretty much constantly there for now, but when I try to do anything that requires detail work or lots of movement, the clumsiness and lack of control is noticeable. I am even having a hard time knitting, even on big needles, and knitting is so second-nature (kind of like typing) to me I often don’t have to really watch what I’m doing.

The thing I’m most worried about is that it’s gotten so much worse so quickly. Typically by the week after a chemo it had faded to nearly unnoticeable levels – this time it’s even worse than it was early in the week. In some cases, it never goes away; or it can take as long as a year to go away. I’ve also read that the symptoms may not even peak for 3 – 5 months after the last chemotherapy.

But just today I was reading The Hotel New Hampshire by John Irving, and came across this:

“Human beings are remarkable – at what we can learn to live with,” Father told me. “If we couldn’t get strong from what we lose, and what we miss, and what we want and can’t have,” Father said, “then we couldn’t ever get strong enough, could we? What else makes us strong?” Father asked.

18
Apr
09

The Day After . . .

. . . my last chemotherapy.

This one has hit me pretty hard – I’m having a lot of pain and quite a bit of stomach/intestinal action, and my chemobrain seems to be pretty bad, too.

Today was one of the first trips out of the house that wasn’t for a doctor appointment in a long time. I had Brian take me to the grocery store today, because there were a few items I just had to have, but the places I usually order online don’t carry them. He would have come in with me, but I assured him it would only take a few minutes, and that I knew exactly what I needed and where to find it.

Of course, it was all being remodeled, and everything was moved around, so I ended up spending a lot longer pushing a cart than I expected. I finally found everything I needed, plus a couple impulse buys, but by the time I was heading for the checkout I banged my cart into several stationary objects. Guess it’s a good thing I didn’t drive the car.

Typing is not working very well right now because of the increased peripheral neuropathy symptoms in my fingers, so I’ll just say that I’m happy to have finished with chemo, and I’m looking forward to getting through the last few weeks of feeling awful, and finally get back to real life!

08
Apr
09

Closing in on the endgame . . .

Yesterday Brian pointed out that there were only 10 more days before I’m done with chemotherapy.

Sadly, even though that was a happy thought, I then focused on how I’m going to feel crappy for at least 2 weeks afterwards.

Sigh. I thought I was getting out of that mental state. I really *want* to get out of that mental state. All the sun for the last few days made me *feel* like I was getting out of it, but apparently once the sun is back behind the clouds, so am I.

It really was much easier to have a positive attitude the first time I had cancer – although I do recall have some pretty grim days as I progressed through the chemotherapy back then too. Fortunately, back then I didn’t have to deal with all the illnesses I’ve been coping with this time. I’m not sure what to think about the pneumonia – I finally was feeling a little better earlier this week, but as of yesterday, I seem to be back to the same place I was the week before. Chest pain, still extremely fatigued (where even walking up the stairs exhausts me) – if it weren’t for the chest pain, I might think it was just (!) the chemotherapy. The doctor will probably want me to go in for another CT scan since I’m still having the pain. I just don’t want it to put any delays on finishing my chemo.

At any rate, here’s to 9 more days! Woot!

04
Apr
09

pneumonia vs. chemo

I’ve been really wiped out the last couple weeks – even though I started the antibiotic over a week ago, things were worse at the beginning of the week than before. As of yesterday, I felt about the same as I did last Friday when I was diagnosed, so the antibiotic doesn’t seem to be helping, which could mean that this is viral pneumonia.

I don’t remember if I went into this before, but pneumonia isn’t a description of a single illness – basically it refers to any infection of the lungs, usually involving inflammation and collection of fluid. It can be bacterial, viral, fungal, or parasitical. So even though I had a pneumonia vaccine in November 2007 that is good for 5 years, the vaccine doesn’t cover every possible source of infection – as a matter of fact, it only covers bacterial infection by the pneumococcal bacterium; and then only about a quarter of the varieties of pneumococcal bacteria out there. So even with its protection against the most common bacterial infections, there’s a ton of other stuff out there that could get me; and with the compromised immune system, even the ones that are covered under the vaccine could still be suspects.

At any rate, when we went in for chemo yesterday, the oncologist expressed concern that I wasn’t feeling better on the antibiotic, and that my white blood count was so low – however, he decided to proceed with the chemo, with strict instructions to report any increased chest symptoms immediately. And if I’m not feeling better by next week, he will probably send me in for another chest CT scan.

Even with the already low white blood count, but with a good neutrophil count (the bacteria-fighting white blood cells), he decided against having me get the daily Neupogen shots next week – they are one of the two ways of getting your bone marrow to start producing white blood cells. The other is only given when there’s at least two weeks between chemo sessions. However, the bet is that as of next Friday, when I go in for my !!SECOND-TO-LAST!! chemo, I will probably have to have them the next week. That’s kind of a pain, since I really don’t feel up for driving these days; fortunately Brian is usually working from home in the mornings, so it’s just a matter of struggling out of bed earlier than I usually can.

I’ve been sleeping a lot, although the last three or four days I’ve started waking up in the middle of the night and being unable to get back to sleep for 3 or 4 hours, but then sleeping hard until late in the morning. I’m not sure if that’s a good sign or not – I’ve been trying to avoid daytime naps since they’re probably one of the culprits (I was only up for 5 hours one day, usually around 8 hours most days for the last week and a half before that). But maybe it’s a sign that I’m finally going to start getting better?

But then there’s chemo. It really has sort of rocketed to my brain this time – I was talking to Brian last night and didn’t remember something that we’d talked about just 5 minutes ago. Hmmm. I’m having more stomach and intestine problems this time around, and the pains are already calling for the good stuff – the morphine. Fortunately I only seem to need it at night, since Tylenol is currently managing it during the day. But even sitting typing, I can feel the tingling in my fingers that means the peripheral neuropathy is escalating. Thank goodness I’ve only got two more sessions! Yay!

Thank you to everyone who is sending all the love, good wishes, positive energy, and prayers – I appreciate them all. It is both motivating and healing to know how many people care and are thinking of me. I think of you-all often, myself, even though I haven’t had the energy to make contact. Hopefully that will be on the mend soon ;-}




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