Posts Tagged ‘recovery

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.

26
Sep
09

Back in the Game

I’m not a sports fan, so using a sports analogy is not really second nature, and anyway, probably falls under the heading of cliche. But I definitely feel as if the last two years have been one big sideline experience.

Or I could use the science fiction cliche of living in an alternate universe for two years, and I just found my way back through a wormhole to real life.

If I wanted to be really cruel, I would use that horrible deus ex machina of feeling like it all has been a dream (sometimes a nightmare) – of course, then I’d have to end with “and I woke up, and it was all a dream”. Sadly, it hasn’t been.

I still get tired, I still have insomnia (but then, I did *before* cancer, so is it just my normal insomnia, or the insomnia that they claim comes from being a cancer patient? And does it matter? Insomnia sucks, either way.), I still have days where I feel sad or out of sorts; but for the most part, I am living life again, instead of watching it through the lens of a cancer patient.

The cancer patient glasses have many different view settings, and not every patient uses all of them.

Some wearers do the rose-colored glasses, and view cancer as the best thing that has ever happened to them, because it has led them to rearrange their priorities, appreciate life and loved ones more, and become more spiritual, compassionate, and altruistic. And for some people, it does work that way; perhaps perceiving that it does all this is a self-fulfilling prophecy, and thinking it does make it so.

A polar-opposite pair of lenses is the “grass-is-greener” spectacles. “Why did *I* get cancer? Look how happy everyone else is. How can they be so happy when I’m sick? If only <fill in the blank with healthy lifestyle choices you didn’t make, the name of the deity who could have prevented this, the person whose genetics doomed you to this, the stress or event that might have triggered the disease, the person whose love would have led you on another life path and this never would have happened, the way you could have avoided the environmental pollutants that have caused this, the government who should have regulated said pollutants better, etc.>”. Oftentimes, these glasses include self-blame, or simply envy that others are free of the scourge.

Rather than being peaceful, blue lenses are all about sadness and grief. Although many days may bring simple low spirits, it is easy to find depression, despair, and hopelessness looking through blue.

One of the worst are the blackout lenses – all one can see through these is fear. Fear of treatment; fear of recurrence or metastases; of pain; of loss; of abandonment, bankruptcy, and incapacity; and fear of death. Sometimes, fear becomes a way of life. For some, only briefly; for others it stretches on long after one finishes treatment. Even good things can cause fearfulness – one might fear seeing other people because they’ll be kind and make you cry.

Red is anger – pretty clear what one sees here. “I have cancer.”

But most lenses are mirror shades, only they’re mirrored on the inside, so you only see yourself (and perhaps a smoky image of things on the outside). This view can cause many reactions in cancer patients. How am I going to get through this? My life will never be the same. I’m disfigured. My cancer is worse than yours. Bids for attention. Grasping for everything people will give you – pity, support, whatever. The martyr syndrome.

Sometimes one even realizes that the view is skewed, but it doesn’t change the fact that you see what you see.

How much harder it must be for someone who has metastases or a terminal diagnosis! To be able to come through the ordeal with the knowledge that you’re cured but with a chance of recurrence; and to take off the cancer glasses and be able to go back to life, rewritten, perhaps, but still “normal”, is something to be proud of.

But for someone for whom the “new normal” is to live their life with ongoing treatment and an unsure future, is there life without the glasses? To deal with it at all is something to be proud of; and it is our job, as their friends and family, to be on the outside of whatever lenses they wear, providing a pool of love and normalcy for them to dip into when they need it, and can handle it.

Of course, that is true for even us curable cancer patients – I had an ocean of love and normalcy around me due to all the friends and family who supported me and let me know they were there even when things were difficult. I would not have had the courage to remove the cancer lenses without them. I can only hope to be part of such a source for those I love who need it in their turn.

12
Jul
09

Long time, no post

About three weeks ago I was talking to one of my friends at work, who said “You know, you *sound* like you feel better.” I realized at that point that I *did* feel better – and had for at least a week or so. I’m working full-time, and actually have energy when I get home to do stuff besides sit and read – and except for a migraine¬† this past Friday, have been feeling pretty darn close to normal.

We had friends visiting for the Fourth of July weekend, and we had fun, although I wasn’t able to do as much as I wanted to. We had the hottest weather of the year so far that weekend, and I don’t do well with heat. I used to live in Livermore, CA, where it would stay in the 90s to low100s for weeks at a time; and I worked outdoors at a dog kennel to boot. Never had a problem with the heat. A few years after I moved to Portland, I started getting sick if I spent much time in heat over about 85 degrees. I get a headache that feels like a migraine, nausea, and lightheadedness. If I don’t get somewhere cool fairly quickly, I actually get worse than nausea, and start vomiting.

Of course, our main plan for the weekend of the fourth involved going to the Waterfront Blues Festival. We got to the festival on the afternoon of the 3rd, and I was only able to stay for a bit longer than an hour. Brian ended up taking me home and driving back down while Matt and Nancy stayed and danced Zydeco. Saturday I didn’t even try going – there was just no way I was going to be able to enjoy it, and we’d bought tickets for one of the Blues Cruises on the Portland Spirit – I just pictured being stuck on the boat, sick, for 2 or 3 hours, and decided that I didn’t want to subject them or myself to that. So I spent the day and evening at home, and tried to get Robin to woofle whenever he heard fireworks – that worked for the first hour or so, and then he spent the rest of the time under my feet.

Sunday was considerably cooler, just mid-80s, so we went down to the Saturday Market and wandered around. After a couple hours of that, it started getting too warm again, so I cruised on up to Powell’s City of Books, where Brian, Matt, and Nancy were going to meet me when they were done at the Market. On my way up, I noticed that my back was starting to hurt – I haven’t had problems with it for quite a while, but I couldn’t come up with anything I’d done specifically to set it off. Once I got to Powell’s, I broke my book-stash-diet – there were several sequels to books I had read that I just *had* to have. Matt and Brian sat in the cafe while Nancy spent her time in the Drama section, and I was in there looking at graphic novels. We all met an hour later to check out, and drove on up to NW 23rd to wander around. We walked on down to Marrakesh, where we enjoyed a delicious dinner, although I learned that my body hasn’t completely recovered, because I was stiff and sore. I’m pretty sure that didn’t help my back any.

This past week, my back has been bothering me, mostly both sides of my lower back. It would stiffen up and be painful after sitting at my desk or in my recliner in the evening, but it seemed to be clearing up slowly. Thursday morning, I got up at 6 a.m. to go pee, and it seemed to be completely fine. When I got up at 8 a.m., my right-side lower back screamed at me, spasming so badly I could hardly walk. As of today, it’s down to about a 3 on the pain scale, from around a 7, and I’m trying to move around a lot, so that I don’t spend too much time sitting in any one position.

In some ways, I’m pleased to have this kind of problem, instead of being inundated with poisons, or recovering from surgery or chemo. It seems pretty normal.

14
Jun
09

The Bridge Over the River Exhaustion

I finished my second week of full-time work on Friday, and although I was tired, I wasn’t totally wiped out. Slowly I’m starting to build some stamina. I am trying to park farther from work, so that I have to walk farther; and I’ve been having to do some physical stuff at work – moving boxes and stuff in preparation for shipping to events. But come Saturday, I don’t have much energy, so again this weekend I have spent a lot of time reading.

One of the ways to work a dog to exhaustion is to make him think – we find that if we start training Robin to do some new trick, and spend enough time at it at any one time, he is as tired as if we took him on a long walk.

We had dinner with Sharon and Gary Saturday night, and then they started teaching us how to play Bridge. Taking tricks is nothing – all the important (and confusing) part happens before you ever lay a card on the table. By the time we’d played 5 hands, I was so tired that I totally forgot the conception of a trump card, and was playing as if I was playing Hearts. Fortunately, Gary (my partner) was not only kind, but forgiving also ;-}

This afternoon, Robin was in dire need of a walk. So I girded my, um, feet, and we walked around the block. I’ve measured it in the car, and it is 1/4 mile. Having thought ahead a bit, I headed downhill to start, because then I was walking uphill on the middle of the walk, and downhill again on the way back home. I’m pretty sure that’s the only reason I made it all the way around. Once we got back in the door, I collapsed into my recliner and just lay there for about 45 minutes.

I really need to start getting out with him every day, the way I used to – *both* of us need it. I also need to start working on some strength exercises. There’s a balance between pushing to get myself back to being relatively fit and overdoing it; so far, I haven’t been pushing at all, because it has been such a struggle just to be able to get back into work. Now that I’m back to full-time, and as it levels off to being normal, and not such an effort, I am going to start adding in the exercising a bit at a time. It’s really tempting to start by just doing everything I used to do, but I actually recognize (without having to have a doctor tell me) that I’m not ready for that yet. Patience isn’t really one of my virtues, but I’m working on it, and trying not to let patience be an excuse for total sloth.

It doesn’t help that I’m still having trouble sleeping – I find that I am getting somewhere between 4 and 6 hours a night. I really try to get to bed earlier, but I have trouble falling asleep, so I’ll get up and read a chapter until I feel tired again; then I lie awake trying not to think about not falling asleep; eventually I do sleep, but it’s very broken. I have been having very interesting dreams, though. Guess I’m making up for the lack of sleep by trying to make what sleep I do get worthwhile. Recently I’ve been dreaming about a book I was reading; and last night I dreamt about Robin, and about Brian and work, too. It’ll probably be the only time I ever see Robin go swimming.

07
Jun
09

Foreign Objects and Me

The surgery to have the chemo port removed was very quick – indeed, we spent more time between when my appointment was scheduled and when it actually started (1 hour) than we did undergoing the surgery (20 minutes, including changing into/out of the gown).

The numbing agent was just injected, and the surgeon started cutting before it had completely taken effect – it was very quick to get me numb (30 to 45 *seconds*), but she was quicker still. The first thing she did was cut out the old scar (it was very thick and red from having been cut open 3 times already – 2 ports in, 1 port out), and she told me that this would help keep it “pretty.” Considering the number and size of scars on my chest, and my displeasure about the appearance of my right-side implant, I can’t say that I think this is really going to make things prettier.

After the numbing agent kicked in fully, all I could feel was tugging, and I didn’t feel the tubing being dragged out of the vein at all. A few stitches, steri-strips, a cotton gauze pad, and some tegaderm later, I was dressed and Brian was driving me to Dairy Queen for the obligatory Heath Bar Blizzard after a medical procedure.

Friday afternoon the numbing agent seemed to be still working, because I didn’t really feel much at all. As the evening wore on, the pain grew, and it looked like quite a bit of blood had leaked. The pain kept me awake a long time that night. I was using ibuprofen because it seems to help the most with pain for me, but it wasn’t enough to let me sleep. Eventually out of sheer exhaustion I did fall asleep around 3:30 a.m. Saturday day was much the same painwise, until later in the afternoon it faded considerably. That evening and night, though it got bad again. So far today, it’s been pretty mild – I can take the tegaderm and cotton gauze off this evening, so we’ll see if that helps.

So the number of foreign objects in my body has now been reduced by 1/3.

03
Jun
09

I’m being deported on Friday

I reminded Brian that my appointment with the surgeon to have my chemo port removed is on Friday afternoon, and he said, “Oh, you’re being deported.”

This time, perhaps because the port went into the same place and there was scar tissue built up, I haven’t noticed it too much. The first time, it was uncomfortable, and I couldn’t lie on my right side at all for most of the time I had it in.

Also, last time, after I was done with the chemo, I couldn’t just have the port taken out in the usual office procedure – I was on warfarin at the time, so the surgeon would only do it in an operating room. So I ended up having it removed when I had my reconstruction/ovary-removal surgery.

For some reason, I’m a little nervous about having it removed in office, and totally concious – but lots of people do, so I’m sure it’s not a big deal. It just seems as if, when you’re taking something out of one of the major veins, that it *should* be a big deal. Even knowing that they do angiograms and other procedures where a vein or artery is entered under non-operating-room conditions doesn’t really make me less nervous.

I faced major surgeries with less nervousness, so I’m not sure why this bugs me. On one hand, I’m looking forward to getting rid of it, because it is nearly the last thing related to having cancer that I still have to deal with – the other thing being the anti-hormonal pill that I have to take for the next five years (and the quarterly follow-ups with the oncologist, and the yearly bone-density scans, and the – oh, never mind). On the other hand, I think there’s a superstitious part of me that is afraid that shortly after it’s removed, I’ll find out I have cancer again. It was only three months between the port being removed and finding the lump this last time – but then, it was only three months between my reconstruction surgery and finding the lump; three months between having my ovaries removed and finding the lump; three months from starting the anti-hormonal treatment to finding the lump.

But I could also say: it was three months between flying down to visit my mother-in-law and finding the lump; three months between having my first bone density scan and finding the lump; three months from our eleventh anniversary to finding the lump.

Intellectually, I know all of these things are unrelated to getting cancer – that doesn’t stop me from having irrational fears.

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!




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