Posts Tagged ‘radiation

12
Jan
09

Don’t Let This Happen to You (for the chemo-impaired)

1. I did *not* try to fix my sewing machine in order to have to buy a new one.

2. What? Quit looking at me like that!

I really was just trying to rethread it, make sure that it was properly threaded, ’cause I was sure that was the problem.

Then all I did was review the stitch and tension settings.

And I figured that cleaning out the bobbin case couldn’t hurt.

Do you think it was taking out the first screw that was the mistake?

And where was Brian as I was merrily tripping down the “I’ve done this before so there’s no way I can screw it up this time, in spite of the chemo brain” trail?

He saw what I was doing and slunk around the corner, to come back only when I called him to help me get the last screw out. To be fair, he did ask me if I thought I should be doing this – and to be fair, I answered “No,” and handed him the screwdriver.

I don’t blame him, though – he knows that I would never stand for being locked in the garage to keep me away from the sewing machine (and besides, just think what I could have done with two cars and a shop-full of tools. . .).

So I’m blogging right now in an attempt to keep myself from going downstairs and trying just one more adjustment – because surely I have it *nearly* right, and it just needs a little tweaking. . .

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21
Dec
08

December 21, 2008

Happy Winter Solstice!

We’re snowed in, with the most snow that we remember having since we moved out here.

Last weekend, we flew down to Northern California to visit family on our usual quickie Christmas visit (I didn’t get to go last year because of the chemo). The weather forecast had indicated that snow and ice were going to arrive soon after we left Portland, so we made sure we had the chains in the car and headed off to the airport.

We had a lovely visit, and got to see parents and siblings on both sides, and meet the newest member of the family, our grandniece – what an adorable little girl! And we’ve got a grandnephew due the last week in December, so we’re excited about that, too ;-}

We flew home Sunday afternoon, arriving into PDX around 3:30, with the promised ice and snow awaiting us. By the time I had stopped at the Columbia Sportswear outlet and bought myself a new jacket, Brian picked up the checked bag, and we rode the shuttle out to the parking lot, it was nearly dark. We decided to start out without chains, and made it nearly home before we ran into any difficulties. After discussing the best route through the back streets, we decided to take the exit prior to our normal exit, because it has a slight downward slope at the top (whereas our usual exit has a bit of an upward slope at the top); our goal was to keep moving as much as possible, and only stop when absolutely necessary. After having to u-turn to get away from a line of stuck cars and go another way, we ran into the same problem on our second-choice route; and as we started out on our third-choice route (the one with the worst hills), we saw the line of cars that had been moving just 30 seconds prior come to a dead stop as the lead car slid sideways and stopped. Argh! Brian almost pulled over to put on the chains, but we were only about a mile from home, and I said “Just go around them, there’s nobody coming the other way”, so we made it around and home without the dreaded chain installation – yay!

But more snow fell that night, so I ended up working from home for three days – Thursday morning I was able to get the car out due to a thaw, and took the MINI over to get studded snow tires. Worked in the office Thursday and Friday. I had a grocery delivery scheduled for Friday evening, but Safeway called and cancelled. Did they try to reschedule? No – just cancel. You can bet they’re on *my* shit-list! So yesterday I had to drive over to Freddie’s and pick up groceries, and picked up some snow boots and some new flannel sheets as well. By the time I came out, the car had more than 1/4-inch of snow on it. It snowed heavily all afternoon and evening, and we now have around 3″ – 4″.

Robin loves snow, at least the powdery kind – he lays right down and starts poking his nose into it, romps through it, and makes snow dog-angels – unfortunately, I couldn’t get to the camera while he was playing, or I’d post a picture. Here’s a picture of him in our *last* batch of snow:

Snow gives me the runs!

Snow gives me the runs!

Jumping for joy ;-}

Jumping for joy ;-}

This is so cool!

This is so cool!

What he doesn’t like is when the top of the snow gets crunchy. There’s about a 1/2-inch layer on top now that has solidified, and he mostly breaks through, but sometimes slides. And we’re going to have to shovel out his little yard – there’s a drift that comes up to his chest that he has to jump over to get in and out. At least with the fenced-off area we don’t have to “watch out where the Shelties go” – and Robin is the only one who eats snow, so I think we’re safe on that count ;-}

My port-a-cath (chemo port) incisions are healing well, although they’re kind of itchy, even nearly two weeks later. The surgeon did manage to implant it on the right side, so at least I don’t have to worry about the increased risk of lymphedema in my left arm. I will find out how the port works when I go in for my first chemo in January – sometimes they will allow inflow but draws don’t work. Last time I was fortunate enough that it worked both in and out, but really, as long as it lets the chemo in, I can deal with arm-sticks for the blood draws.

For the most part I’m feeling pretty well, although I do seem to have some residual fatigue, presumably the dregs of the radiation fatigue. There’s some tightness in the radiation-treated area, but I try to do my stretches and massage regularly to keep it from building up scar tissue. I saw the radiation oncologist for my first post-treatment follow-up, and she was pleased at how well the burns have faded. There’s still a bit of darker color and a little bit of peeling, but other than that, you can’t tell what it has been through.

Like the rest of the Northwest, we’re in for more nasty weather – today is supposed to be freezing rain, and it isn’t supposed to warm up until Christmas Eve. Hope you all are keeping warm and safe, as well!

06
Dec
08

December 6, 2008

This time last year, I was bald. This year, I am painfully short (well, my hair is).

I’ve decided to start keeping track of my hair adventures with this next round of chemo – I have a patchy record from the previous treatment, but am going to start a picture album of the changes I go through this time. I really regret that I didn’t get more pictures of the super-tight curl and the afro in its various stages and colors; although perhaps I can get a digital copy from the radiation oncologist of my ‘tweener stage with the bleached curls and the white roots. Except I have the “deer-in-the-headlights” stare in that one, so it’s not one of my better pictures. I definitely take after my mom that way – we always look like that in posed pictures. Candids are *much* better.

My radiation burns are clearing up nicely. Lots of peeling, with smooth, shiny skin underneath; but I suspect that I’m going to have a visual reminder from the treatment for quite a while until the tan fades. Happily, I haven’t developed a lot of scar tissue yet, although that is apparently an ongoing development for months if not years after. There is one big clump right in between the two scars, but now that my skin isn’t so sensitive to touch, I’ve gotten back into the massage technique the physical therapist showed me. I had to buy some tennis balls just for that – it puts a more even pressure on the tissue and rolls very easily, whereas using your fingers creates more specific points of pressure (which is fine in many types of massage, but not so much for breaking up scar tissue, I guess). The trick is to keep from doing it when the dog is around – he thinks tennis balls are *his* toys. Fortunately he’s not such a ball dog as a retriever would be. Robin will play fetch and dribble them between rungs of a chair, but by far his favorite game with a tennis ball is to pull the fuzz off of it.

I’m still feeling some fatigue, although it never got as bad as I thought it might. I have had some difficulty sleeping, but for the most part have been getting roughly 7 or 8 hours most nights.

Next up, I have my chemo port implanted on Tuesday this coming week. When I met with the surgeon, she said that she would try to put it on the right side again, in the same spot as before; but sometimes scarring from a previous port can make that impossible. If that’s the way it goes for me, she’ll have to put it in on the left side. That’s undesireable for several reasons – there’s all the skin damage from the radiation treatment to avoid; I normally sleep on my left side, and laying on the side with the port is very uncomfortable; but the biggest fear is that it will raise the risk of lymphedema in my left arm significantly. I am very anxious to avoid developing lymphedema. The people I know who have it tell me it is much more than inconvenient – it can be life-changing because of the way you have to limit things you do, and how you do them. I’ll keep my fingers crossed (unless someone tells me that lymphedema can be triggered that way. . .).

At this point, I haven’t heard back from the oncologist about the use of Avastin in my case – he was out of town the week before, and this week I think he was hoping to avoid talking to me by having the triage nurse ask if I couldn’t just talk to him when I came in for my first chemo. Well, no, I can’t. I’m very concerned about the significant increased risk of thromboembolic events (blood clots), because of my history. And I really want to know how he can justify that risk in the face of an unknown benefit for a treatment that is completely non-standard. On the other hand, I’m also paranoid about the possibility that this recurrence is much more aggressive than we know, and am willing to take a calculated risk in an effort to make sure that any cancer cells that might have gotten through the lymph system are dealt with. So I stated my concerns very clearly, and asked to have him call me back. When I hadn’t received a call as of Friday morning, I called again and told her that I really wanted to hear from him, as this is very important to me. She called back early Friday afternoon, and said that he was “gathering information”, and that he would call me early next week. OK.

Then Friday, we’re flying down to see our parents for our usual fly-by Christmas visit. Robin is staying with our neighbors Sharon and Gary, who have the two miniature poodles Jasmine and Lola. The three of them got along great at Thanksgiving (i.e., Robin, Jasmine, and Lola), although the two girls did sort of play together and sort of ignore Robin. I’m hoping that enforced together-time will be more fun for him – he and Jasmine loved to play together before Lola came along, so I think he really misses that.

Tomorrow we’re going to see little Emily Rose (and daddy Greg, too!) in The Nutcracker Suite. ER is going to be a Snowflake, and part of the Arabian dancers; Greg is going to be one of the Party Guests. I don’t think he has to dance, but he may be wearing leotards – no, probably not. I bet you couldn’t pay him to do that!

23
Nov
08

November 23, 2008

Well, I’m cruising along toward the finish on my radiation treatments – four more to go, and I’m very pleased about that. Even though they gave me a “skin break” on the overall irradiation, the area around the scar and towards my armpit where they did the boost is extremely red and quite sensitive. No blisters yet, so it is still considered a first-degree burn, and the aloe gel does help soothe it; but I have to keep applying it, and having fabric rub against the skin for any length of time irritates it badly. I’m back on the general irradiation treatment now, but hopefully this 2-day weekend break, and the 1-day Thanksgiving break will keep it from getting too much worse.

We met with the oncologist on Thursday, and I have the starting date for my chemo: January 9. I will be having the low-dose regimen, where I have chemo three weeks in a row, and one week off. The drug will be Taxol, but the twist is that he also wants to have me use Avastin. I asked him why, since Avastin is normally used for Stage IV (metastatic) cancer. The other use for it is “locally recurrent” cancer, which describes my version. The Avastin will be administered in the first and third weeks of each 4 week period. I will have 3 or 4 months-worth of treatments.

Now, you know me, I am obsessively inclined to research, well, everything. Avastin’s action is anti-angiogenesis, which in real language means that it blocks blood pathways from forming to feed a tumor.

What?

I don’t have a tumor, right? This time, they got it all, right?

Yes, at least if you can trust the pathology report. However, the oncologist said that there isn’t really a standard for treating my type of recurrence – because of its quick return and aggressive growth, the idea is to be as aggressive as possible in its treatment. Hence the radiation to treat the local area, and the chemo to make sure that any stray cancer cells that might have passed through a lymph node without pausing are killed off.

But I do want to talk to him again, because I’m not really sure that I understand just how the Avastin is going to work on any floating cells out there – if it’s floating around in either the lymph or blood, the Taxol is there to kill it; Avastin is targeted to tumors. Perhaps it is just a precaution in case there were microscopic cells parked somewhere that did not show up on my PET scan this summer; or perhaps it is just because I’ve defied the odds already.

Another concern I have about the Avastin is that it causes bleeding problems. Now, the oncologist may have believed he was communicating the risks clearly, and I think for the most part, he did. But just the day before I met with him, there was a study publicized that claims that the risk of blood clots for Avastin patients is 33% higher that in control group studies. Of course, Genentech challenged that conclusion; as who wouldn’t when they make obscene amounts of money off a cash cow like Avastin. And I’ve been told this previously, that cancer patients are “hypercoagulative”, meaning they tend towards clots anyway, due to the cancer. However, the researchers based their findings on differences in clotting episodes between patients given Avastin and control patients that were NOT given Avastin – presumably the control group also had cancer. 33% increase is more than a statistical anomaly, given that both sets of patients should have been at the normal hypercoagulative risk of cancer patients in general.

The problem for me is that I have a history of pulmonary embolism; indeed, that is why the oncologist wanted me to have my ovaries removed – so that I wouldn’t be taking Tamoxifen, which includes an increased risk of clotting.

So why, if that is such a concern at a relatively low risk with Tamoxifen (0.5% for a deep vein thrombosis (leg clot), and 0.3% for pulmonary embolism (lung clot)), isn’t it a concern with a higher risk from Avastin (the *smallest* risk number I can find so far is 14%, which is a 6% increase over the placebo patients)?

Now, I’m interested to note that the clot information that Avastin labeling documents refers to includes both venous and arterial thromboembolic events – so in addition to having an increased chance of DVT or PE, I also have to worry about stroke, TIA, and heart attacks (oh, but those risks are only 4.4%, a mere 2.5% increase over the placebo group. . .).

So I’m not convinced at this point that I want to take my chances with the Avastin. On the other hand, the idea that there could be a stealth tumor out there somewhere is a concern. The researcher cited in the San Francisco Chronicle article, Dr. Shenhong Wu, said “his findings are not a reason to avoid taking Avastin,” and that it was simply a warning for hypervigilance in relation to clot symptoms.

So there you go. Will the cancer get me, or the blood clot? Or will I sail through this as I sailed through the last (unsuccessful) treatment? Stay tuned for the next exciting episode of “As the Epidermis Burns”!

17
Nov
08

November 17, 2008

So I am totally burned. No, really. Literally.

Under my left arm, and on the left side of my breast I was extremely red and in pain Thursday, Friday, and Saturday – guess it’s a good thing they’re giving the rest of my skin a break, because I wouldn’t want to have it all feeling this way. I have a big dark red spot that runs 2 inches vertically downwards from where the upward curve of the clavicle is; and another one under my left arm that is more horizontal. The scar where my sentinal nodes were removed is getting wrinkly because of the swelling around it.

Thank god for Aloe gel!

I’m definitely starting to feel the fatigue – even having a second infusion of caffeine this afternoon didn’t help. I’m just about to go to bed, and hope that I get a good night’s sleep tonight. I am going to take some Ambien, because otherwise I typically wake up an hour or two after I finally get to sleep (no matter how tired I am, it typically takes anywhere from 1/2 hour to 2 hours before I fall asleep). I got basically no sleep Thursday night, and managed to sleep about 5 hours on Friday day – maybe got 6 or 7 hours a night Friday and Saturday nights, but Sunday night, I think I only got about 4. So it’s hard to tell how much of the fatigue is from lack of sleep, and how much of it is from the radiation.

Poor Robin is anxious to go for a walk, and I just don’t have the energy – sitting reading or at the computer is about all I’m up for, although we watched a movie last night – Repo Man. I hadn’t seen that for years, and had forgotten how much it cracked me up. Definitely Plate of Shrimp!

13
Nov
08

November 13, 2008

Well, the Games Party was loads of fun – we had 33 attendees – the one who traveled furthest came from Georgia! We polished off 5-1/2 half-gallons of ice cream, two cans of whipping cream, a giant bag of Doritos, one of Ruffles, one of Fritos, two types of dip, a meat/cheese platter, most of a veggie platter, two bottles of champagne, two punch-bowls-full of Nuclear Punch, a case of beer, a bottle of wine, half a case of sparkling water, and 2 cases of soda.

And we played some games.

A new one that had never hit the party before was “Man Bites Dog”. Neither Brian nor I had the chance to play it that night, but we played it the next day, and it was a blast. Cards with words or short phrases are dealt to each player, and each person tries to make a headline using up to 5 cards. So we came up with some hilarious ones like “Blind Teen Angel Shoots Cop”, and “Angry Tourist Hits Naked Model”.

Another new one was “Pass the Popcorn”, which is a movie trivia game. It was fun, although I’m not really up on movies, so I was surprised at how well I did. Lots of other games were played – Quiddler, Taboo, Munchkin Fu, Boggle, and many others; and of course, we played Midnight Party (quite a while after midnight, however). We slept in on Sunday, went out to brunch with a friend, and lazed around the house for the rest of the afternoon – except for when the neighbor boy came by to ask if Robin could play – they went out and ran around the back yard. I think we have the only Shetland Sheepdog whose idea of a game is to *be* chased, rather than do the chasing. If we ever get him out to the farm again, he’s going to be sadly disappointed that the sheep don’t want to chase him. . .

I am down to only 10 more radiation treatments to go – yay!!! Even now, the worst thing I’ve got going is the radiation burns. Not only do I have them on my front and under my left arm, but because the beam that is treating the sub-clavicular lymph nodes is directly overhead, I have radiation burns on the back of my left shoulder from the radiation exiting my body. How scary is that?

Yesterday I met with the radiation oncologist, and when she saw my burns, she decided it was time to switch to the electron boost on the lumpectomy scar and give the rest of the tissue a little break. This morning was my first boost, and it is pretty much the same as the radiation treatment, just at a different angle. Because they can regulate how deep the electron beam goes, they can position the beam directly above the breast without fear that it will go deep enough to enter your chest cavity and damage your lungs or heart. I’ll have 5 boost treatments, and then finish up with another 6 regular radiation treatments. My last treatment will be the day after Thanksgiving.

Also yesterday, I had a chest x-ray and a follow-up appointment with the pulmonary specialist to find out the status of my sarcoidosis. Guess what? It was all gone, just as if it had never been there. I’m still convinced that the Ambien CR was the cause, but the doctors don’t believe it. They rightly point out that Ambien has exactly the same set of adverse reactions listed, and I’ve never had a problem with plain Ambien. My opinion is that the reason the CR is a problem is because I’m also on Nexium to control my GERD, which reduces my stomach acid to nearly nothing. With Ambien CR, I suspect that the lack of stomach acid means that I didn’t metabolize the Ambien at the “proper” rate that someone with a normal complement of stomach acid would, and that it was essentially causing an overdose. Three days after I stopped taking the Ambien CR, my symptoms were much better; and a week after that, I had basically no symptoms. However, since I’m not going to try taking Ambien CR to recreate the problem just to prove my theory, we’ll probably never know.

When the doctor told me the sarcoidosis was gone, I let out a breath I didn’t know I’d been holding. In spite of having two biopsies that were negative for cancer, I was apparently still worried about it.

And next week, I meet with the oncologist to determine the chemo treatment plan – when, and how many. I basically know the what, unless he’s come up with an alternative: Taxol. I’ll be glad to have the plan – having a goal date to look forward to is very helpful. I’ve been crossing off each date on my calendar after I finish another radiation treatment, and it helps my attitude when I see that I’ve finished more than two-thirds of the treatments.

Next up on the calendar is Thanksgiving – we’re spending it with our good friends Sharon and Gary and their family – they’re awfully good to us!

29
Oct
08

October 29, 2008

I’ve been dilatory in posting – my apologies.

Radiation is just over a third done. I’ve had 12 treatments out of 33, and up until yesterday evening, I haven’t really had any side-effects. I started feeling a little bit itchy, and when I got ready for bed, I saw that I’d developed a mild “sunburn”. I told Brian that I had a modified trucker’s tan.

The radiation oncologist had me start using aloe vera gel right from the start, but I’d only been using it once a day, and now she wants me to use it twice a day. Based on the itch factor, I think I’m going to use it three times a day.

One of the potential side effects of having lymph nodes removed so near the arm is that you can develop lymphedema – the lymph fluid collects in your arm because it doesn’t have as clear a path to get back out. Lymph fluid carries proteins, foreign materials, and cell detritus through the lymph system and the lymph nodes filter out the detritus – the fluid then passes back into the blood (this is a very simplified layman’s description – please don’t sic the Accuracy Police on me!).

When just the sentinel nodes are removed (i.e., the first three lymph nodes that carry fluid out of the breast), the risk of developing lymphedema is very small. Radiation increases the chances of it occuring, so the radiation oncologist sends all her patients to consult with a physical therapist to learn how to prevent it, how to recognize the symptoms, and if necessary, to treat it. I checked with my favorite physical therapist, and sadly no-one in his office does lymphedema-related work, but he referred me to one of his colleagues who does. I met with her last week, and she was impressed at how well I’ve healed after all the surgeries, and at the range of motion I have. After teaching me some stretches to help with muscles that have tightened from the surgeries and thus potentially could raise my chances of getting lymphedema, she measured me for a compression sleeve. I asked why I needed a compression sleeve now, since I had no sign of lymphedema, and she said it needed to be fitted when I was a normal size, so that if I *do* get it, they don’t have to guess by measuring the unaffected arm. OK, so I’ll have a compression sleeve that I hope never to need.

Let’s see – I don’t really think there’s anything else to mention, since mostly I have very long days going to radiation, commuting to work, working, commuting home, and not much else. Tomorrow night I am going to my beading group, and we’re making earrings to donate as Christmas gifts for soldiers in Iraq – there’s a group we’re donating through, but I don’t have the details yet. BTW, as far as I know, the intent is earrings for *female* soldiers, although I suppose they could really be for whoever wants some.

Oh yeah – we’re having our annual Games Party on November 8 – 26th Annual! I’m looking forward to it, although I suspect I’ll want a nap that afternoon to make sure I’m up for Midnight Party ;-}




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