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. . .

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 ;-}

14
Oct
08

October 14, 2008

Today was my first radiation treatment. I got there 15 minutes early, and was told that their computers were down, but that they expected them to be up any time.

I got a lot of knitting done.

An hour and 15 minutes later, they took me in to start the checking process. They positioned me on my personal mold, and then started moving me around. There are lasers coming out of the walls on either side of the machine, and they use the two side tattoos to line you up. Then they start taking photos of you with the radiation machine – it projects a light in the shape of the area they plan to irradiate, and they take digital x-rays to make sure everything important is out of the way (heart, lungs, etc.). There are three different positions – one to the right, coming in at an angle over the right breast; one down and to the left, so it gets the portion of the left chest and axillary lymph nodes that are “in the shade”, as it were, of the left breast; and a small one that is nearly directly above that is aimed at the upper left chest to get the subclavicular lymph nodes.

Finally, after they got me lined up (with the neck support part of the mold *not* supporting my neck), and a couple rounds of pictures were taken, the two nurses came back in and started drawing on me again (with overhead pens). A guy (I presume he was a doctor, and not just a gawker) came in and looked, said “Yeah, you can go ahead and treat today”, and left – he didn’t even speak to me, and I couldn’t turn my head to look at him. That’s actually the first time anyone has been that rude to me since this whole cancer thing started – everyone else has introduced themselves, and made some effort to at least appear like they recognize me as an individual (and a human being, not just a slab of meat on the treatment table).

Finally, after a couple more rounds of x-rays, the nurse took some photos of me and my topographical map that was drawn on, and said it was time to do the treatment. It only took about 3 minutes, and after 2-1/2 hours, I finally got to go home (the appointment was supposed to be for an hour).

So now I have to go in every weekday morning through the 28th of November (but hey, I get Thanksgiving Day off!  Thanks.) I can’t put any deodorant on before the appointment (on the left side, that is), but can apply it afterwards – *if* I use Tom’s of Maine natural. I can’t have the area in direct sunlight (yeah, like I have really been jonesing to go to the nude beaches – in October and November) (oh, and that mastectomy thing – well, nobody’d notice, right?). I can’t wear a bra with underwires – the only kind I have, because I’m still using the ones I owned before I had the surgery, when I needed them.

Well, at least I’m started now, and can look forward to getting it over with, and having some down time before I start chemo again. Woo-hoo!

07
Oct
08

October 7, 2008

The planning appointment for my radiation series went well, and quickly! They told me to plan on an hour to 1-1/4 hours, but we were out of there in 40 minutes. After my first appointment there, when the doctor was running 45 minutes late, I was prepared for the worst and so was pleasantly surprised.

The “mold” is actually something like a beanbag chair, only flattish; and the “beans” pretty much stay where they pushed them. So I lay down with my head and upper back on the mold, and the nurse had me put my arm over my head. Then two of them started pushing the beans around to conform to my body. When they thought they had it, they put a vacuum tube onto the mold’s nozzle, and sucked the air out of it. That firmed up the mold, and the beans no longer shifted around. After checking my position, they decided that it wasn’t quite right, put air back into the mold, and started shoving the beans around again. This time it was right, so then they moved me under the CT scan lights and started drawing on me, and placing metal stickers and wires on me. After the doctor came in and confirmed that the drawings were OK, they did the CT scan for the doctor to do her planning of angles, etc. They tattooed me (one dead center between my breasts, and one on each side under my arms).

My next appointment is Tuesday, where they’ll double-check all the calculations and positioning, and if it’s all correct, then I’ll have my first treatment. At that time, I’ll find out what my daily appointment time is.

I’ve been having a problem since last Wednesday night/Thursday morning with vertigo – I have BPV (Benign Positional Vertigo, which is due to small particles that form and float around in your inner ear, where they brush against the cilia and cause a sensation that you’re still moving after you’ve stopped). I had physical therapy a year or two ago that taught me how to move my head and body in a certain way to get the particles out of the inner ear, and have not had a problem with it until now.

This time, the movements haven’t helped, and I’m still having problems with the vertigo, although it has lessened significantly. I still cannot drive because I cannot turn my head quickly; and this evening riding home in the car, I started feeling motion sickness – I don’t know that it’s related, but I haven’t had motion sickness in a car except for once (at least in my memory). I called the doctor yesterday, and rather than check out my ears, he wants me to have a brain scan. When I told Brian that, he thought I was joking – I only wish I was.

Come on! This is getting ridiculous – why can’t we check out my ears first? I mean, really – I’m not having any other symptoms that might indicate brain involvement (headaches, blurry vision, seizures, peripheral neuropathy, etc.), and I have a history of BPV. Seems pretty straightforward to me!

At any rate, unless I have to go in for a brain scan this week, I’m free of medical obligations until next Tuesday. And I’m taking a class on Saturday, doing a loomwork bracelet. Matter of fact, that’s probably what I’m going to be doing the next couple nights, prestringing beads for the class. I’m also finishing up my chain maille bracelet from the class I took on the 27th. I’m getting close to finished, but I’ve been really focused on my most critical project, which is a baby afghan (and yes, the baby is already born, but for a change I’ll have the gift to her before she’s two months old. I think that’s a record for me ;-} ). I finished knitting the strips last Saturday, and am now joining them together and weaving in ends. I can carry that along with me on the train into work, and tonight I got a lot done while listening to the debate.

Of course, once all these projects are done, I’ve got a crib quilt to make, and a Christmas knitting project to work on. I suspect that I’ll be very glad I’m not going to start chemo until at least after Christmas, maybe not until after the New Year.

02
Oct
08

October 2, 2008

Oh yeah.

I forgot to update on the cancer treatment progress.

We met with the radiation oncologist on the 22nd, and she wanted to have 4 weeks of healing between the last surgery and the start of radiation.  I wanted to shake her – do you know how big any microscopic cells could grow in a month?  It only took 10 months to grow 1.3cm *while* I was in treatment – in one month, while I’m *waiting* for treatment it could grow *more* than 0.13cm!  They told me before that I was clear, and look what happened…

But…she knows her job, so I just listened, and we scheduled the appointment to have a mold made.  Because they have to hit the target exactly in order to avoid irradiating the heart and lungs, or other important things like the unaffected breast, I will have to lie in exactly the same position for every single one of the 33 appointments I will have.  Hence the mold, which will hold my left arm over my head and (I think) slightly arch my back so that my chest is rounded up (get along little . . ., well, OK, not quite like that).  After the mold is made, they will take a CTscan with me in the mold to figure out where all the internal organs are, so they can plot angles and place tattoos, etc.  I get the mold done on the 6th, and I think the tattoos, also.

Then I will start radiation on the 13th.

5-1/2 weeks later, they’ll change from the general bombardment of my left chest (from the bottom of the ribs to the clavicle), over to a 1 week specific bombardment of the area around my latest scar, where the surgeon placed clips so they can locate the correct spot.

My last treatment should be the day before Thanksgiving – I think that’s taking things a little far, trying to make sure I have something to be thankful for.  As far as I’m concerned, I already do – Brian, Robin, April, and Jeremy; family and friends; a house; a job; my health – well, 4 out of 5 ain’t bad. And by the time Thanksgiving rolls around, I suspect that I will be grateful for not having to go through any more radiation treatments.

As far as side-effects of the radiation treatment, the two worst things I will experience are fatigue and skin problems. The doctor said that if you consider the fatigue from chemo a 10 on a scale of 1 – 10, then most people report the fatigue from radiation around a 3 on the same scale. Also, it won’t start right away – it’ll probably take a couple weeks before I start feeling any, and it will slowly build as the treatment progresses. And it will continue for a couple-three weeks afterwards. As far as skin issues, most people get a “sunburn” effect, to the extent that it turns red, becomes dry, and peels – sometimes it will become swollen and puffy.

Other than that, some of the long term effects can be heart damage, brittle ribs, lymphedema, and cancer. Huh? I thought that’s what we were treating! Yeah, well, that’s down the road – wouldn’t you rather be cancer-free now, and get to go through all this again later? Geez…

Then I have an appointment with the pulmonary specialist in November, about the sarcoidosis – he’ll do a chest x-ray to see if it’s the same, gone away, or if it has spread. I still have symptoms, but typically very mild, and he doesn’t think that the radiation should affect it.

And I meet with the oncologist in mid-November to plan out the chemo treatment. His nurse says that he prefers to leave 4 weeks (what is it with 4 weeks! If they were medieval doctors, it would be 3 weeks, or 5 weeks, or some other mystical number – when did 4 become the talismanic number for doctors?) between radiation and chemo, which means I’d be starting the last week in December.  I figure if he thinks it can wait that long, it can wait another week, and I will start after the New Year. Yeah, this is the same person who was just railing about how big those theoretical microscopic cancer cells could be growing while waiting for radiation treatment to start. But look at it this way – if it grows 0.13cm in the 4 weeks between radiation and chemo, one more week will only add 0. 03cm to it. Hardly the tipping point, eh?

So anyway, there’s the plan. I hope to be able to work through the radiation – I may do more work from home if the fatigue gets bad. As for the rest of it, I’ll think about that tomorrow. After all, tomorrow is another day.

14
Sep
08

September 14, 2008

Well, I’ve been negligent (yet again!) in keeping up on posting – between vacation, work, and medical-related appointments, I will claim lack of time as the culprit.

As I mentioned in the previous post, we had a lovely relaxing vacation down at the cabin, and arrived home late in the afternoon on Labor Day.

I jumped right back into the fray on Tuesday, when Brian and I met with the oncologist.  He told us that nobody really has a “normal” treatment plan for a recurrence like mine, basically because a recurrence like mine is anything but normal.  However, pending the results from pathology on the tumor, his plan would be to treat as follows: less than 0.5cm mass, no chemo; 0.5 – 1.0cm mass, we’d talk about whether chemo would be beneficial or not; greater than 1.0cm mass, definitely chemo.  As the words are leaving his lips, his assistant knocks, and passes the path report in.  The doctor looks at it, and says “Oh. 1.3cm.  That’s bigger than one of the original masses, isn’t it?”  The end result is that I will be having chemo; the only decision was whether or not I would do chemo or radiation first.  He knew I would be meeting with the surgeon later that week, and said that she would discuss the rest of the path report with me.

The next two days started very early, because I had dental appointments both mornings at 8 – I’m in the process of getting my braces into the “retainer” stage, with a little additional work on one of the front teeth.  I will be *so* glad when I’m done with them!

The meeting with the surgeon started out with her coming into the exam room, commenting that I had been “the hot topic of conversation at the breast conference” that morning – in case you’re wondering, that isn’t a good thing.  Basically, a lot of surgeons, oncologists, radiological oncologists, and related medical personnel get together and discuss each case they have.  The consensus was that this recurrence needs to be treated very aggressively, since it is very aggressive itself.  So I said, “So I will be having radiation *and* chemo, then, right?”  She said “Yes,” but then went on to ruin my day by telling me that because the margins were so narrow on the lumpectomy, that she wanted to go back in and take some more tissue.  The big problem was that she felt like that meant removing the implant because there wasn’t enough skin/muscle to take out enough otherwise.  While I was there, she called my plastic surgeon, who is in the same office complex, and he had her send me down so he could take a look.

He sounded much more hopeful that it could be done without removing the implant (which would actually be a remove/reinstall, using a somewhat smaller implant) – basically he gave me a 50% chance that it could be done that way.

So the end result was that we scheduled the surgery for the 12th with both of them there, with a couple smaller implants just in case.  I went into it not knowing how I would come out.  7:30 Friday morning came way too early, but the surgery schedule was on time, so they took me in right at 9:30.  I spoke to the surgeons and the anesthesiologist beforehand, and asked if they could start me out with the twilight sedation, since that’s all the surgeon would need if she was able to do the excision without removing the implant; with the caveat that if the implant did need removal, *then* I would be given the general.  Everyone agreed, and I was pleased to wake up in the operating room at 10:30 with the final dressing being applied to the incision – it gave me a bit of a start to see the plastic surgeon working on me, but it turned out that the surgeon asked him to deal with the closure because there was some concern about the blood supply in the area being interrupted from all the scar tissue, and she felt that he was more experienced with that kind of situation.

An hour in recovery, and a short ride home (via DQ for a Heath Bar Blizzard and some french fries!), and I spent the rest of the day relaxing in our backyard under the elm, lying in one of our new zero-gravity chaise lounges – what a lovely day, sunny, warm, and firmly C-cupped still ;-}

I’ve spent the weekend taking it easy, including a lot of naps (some short, some long), and doing some reading, a little bit of knitting, and a lot of talking on the phone.  I’m going back to work tomorrow, although I don’t know if I’ll be up for a full day or not.  There’s not a good place to lie down at work if I need to, although I could try lying under my table – I should take one of our camping air-mattresses in…

I’ll meet with the surgeon again on Thursday, and expect to find out then if there was any additional cancer found in the excised tissue; and what the next step is.  If they did find any cancer, I don’t know what will happen next – otherwise, it is going to be radiation starting in two or three weeks; that usually runs 5-1/2 or 6 weeks; then I’ll have chemo for somewhere between 4 and 8 sessions.  The radiation is first because all the doctors are sure it hasn’t spread, but it was very aggressive locally; thus they want to do the local attack first.

Anyway, even after the 3-1/2 hour nap I took this afternoon, I’m ready for bed already.  I’ll post the results from the surgeon’s meeting later this week.

01
Sep
08

September 1, 2008

Ah, Vacation!

The surgery on Friday the 22nd went well, the surgeon got clean margins, and gave me drugs for pain, nausea, and potential infection.

My chest is beginning to look like the Nazca Plains in Peru.

Travel went well, with Brian doing all the driving down.  We stopped in Corning on Saturday evening, and visited with my Dad that night and the next morning; drove to Vacaville, where we had a party with Brian’s family.  Monday we drove up to the cabin, had a lovely, relaxing week; and reversed the trip yesterday.  I even drove some this morning, although I slept most of the way home – I didn’t even notice the cat climbing on my lap from the footwell, or jumping back down.

More about vacation later, just wanted to thank everyone who wrote, called, posted, etc., for the love and support – we meet with the oncologist tomorrow morning, so I presume I’ll find out about whether I’m doing chemo or not this time.  Then we meet with the surgeon to follow up on the incision – if I’m not doing chemo, then I’ll probably be starting radiation soon.

I’m actually going to go to bed shortly, in spite of having slept so much of the way home.  I’ve got an early day tomorrow, and pretty much the rest of the week.  I’ll update as I can.

10
Aug
08

August 10, 2008

I have been intending to post for several weeks, but information kept trickling in, and I kept waiting for just the last little bit so I could publish full disclosure, rather than dragging it out over several posts. As well, I was going through a stress-puppy phase, and I tend to withdraw rather than sharing when I’m feeling that way.

As my neurological-type symptoms increased in severity (inability to concentrate, blurry vision, extreme tiredness, memory lapses), to the point where I didn’t feel I could drive safely; and it was taking too long (in my opinion) to get in to see a doctor; I started thinking about what had changed around the time I first got the cold, and never really got better afterwards.  One of the things that had changed was my prescription for Ambien – by early May, it was no longer helping me sleep through the night, and just before my prescription ran out, I had an incredible bout of insomnia that lasted for several days.  I hadn’t been taking Ambien every night (and sometimes not for weeks at a time), nor did I take the maximum dose every time I did take it, because I was concerned about addiction.  Halfway through this bad patch of insomnia I ran out of Ambien, so the doctor prescribed the controlled release form of the drug, Ambien CR, to help me sleep through the night.  It took several days for the insurance company to approve the prescription, so the insomnia got worse, while I tried different over-the-counter items and tried dropping caffeine to half of my usual level, and then half again.

Right about the time I started using the Ambien CR, I developed a major cold, but I did start sleeping better.  The cold finally went away but I continued to have the chest symptoms, and the neurological symptoms started to get worse, as well as the tiredness.  This was what prompted the oncologist to get the CT scan, MRI scans, and the PET scan, which identified the enlarged chest lymph nodes.

So here I am nearing the end of July, waiting to get in to see a doctor, and things are getting worse.  Noting the conjunction of the cold and increasingly bad neurological symptoms with the start of taking Ambien CR, I checked out the clinical trial data for Ambien CR on the manufacturer’s website, and it turns out that every single symptom I had showed up under the Adverse Reactions for this drug.  Again, I didn’t take it every night and didn’t take the full dose if I could avoid it; so it seemed like it shouldn’t have been any worse than the plain Ambien.  However, I stopped taking it, and over a period of three days, saw radical improvement in my ability to concentrate, the blurry vision, the memory problems, and even some of the tiredness and shortness of breath reduced.  Yay for me!

Unfortunately, it didn’t really help with the chest symptoms.

The update on the enlarged lymph nodes in my chest:

My oncologist referred me to a pulmonary specialist, who decided that he wanted another biopsy of the lymph nodes, only this time they would go down through my trachea (windpipe) rather than through my esophagus; and into my bronchial tubes, poke down into my lungs and take samples; and then through into the lymph nodes again.

This latest biopsy was done on August 1, and was again done using the conscious or twilight sedation.  The specialist said that if they found any of the granulomatous inflammatory cells in the lungs, sarcoidosis would be a firm diagnosis; but if they were only in the lymph nodes, it would only be “likely” that I had sarcoidosis; and if they didn’t find anything else (he mentioned cancer again – whoa! I thought that had been ruled out! and he mumbled something about “sampling error” – reducing a possible misdiagnosis from the first biopsy to a statistical anomaly), they would presume I had sarcoidosis, and treat it accordingly; which in my case, because my symptoms were more than mild but on the low end of moderate, meant doing nothing.

This week, the specialist called with the results – nothing in the lungs, nothing but granulomas in the lymph nodes, so good news!  I most likely have sarcoidosis, which means I get to wait for it to go away on its own. Woo-hoo!  I can hardly wait.  Really.

However, I do have other news that isn’t nearly so good.  I found a lump on my left breast (well, what’s left of it, anyway) in June, and after having an ultrasound and a mammogram, was scheduled for a biopsy on July 31.  The results of that biopsy are that the breast cancer has recurred.

I met with my surgeon late this past week, and although they’re still awaiting the final results on the tumor characteristics, it does appear to be a more aggressive type of cancer.  Still, because it was found so soon, and because it is so close to my having finished chemotherapy and starting the anti-hormonal treatment, she and the oncologist are sure (now that two biopsies have shown no cancer in the chest lymph nodes) that it hasn’t spread.

I have a lumpectomy scheduled for August 22, and it will be an outpatient procedure – I will arrive in the morning, be under conscious sedation for the surgery, and go home in the afternoon.  I won’t be able to do any heavy lifting for two weeks, but I expect to be able to return to work the following Monday.

Radiation is definitely going to happen this time around.  When the oncologist called with the cancer news, he indicated that radiation was a sure thing, and I started worrying about what that meant in regards to my implant – dang it, the left one is the one I like!  The surgeon reassured me that the implant can stay in, and that although it will change the feel of it, it won’t explode, or boil dry, or anything like that – whew!  I had pictures of volcanoes running through my head. . .

The surgeon felt that chemo was pretty much guaranteed, because a recurrence is nearly always treated aggressively, and especially so since this cancer appears to be more aggressive itself.  I haven’t yet spoken to the oncologist, but even though I don’t *want* to go through chemo again (hey, my hair is already in major ‘fro territory – a second round of chemo might turn it into barbed-wire spiky steel-wool curliques), if there’s the smallest likelihood that it will help me beat this, then I absolutely will insist on it.  Chemo goes away; dead doesn’t.

Oh yeah – I don’t have tuberculosis.




Post archive

July 2020
S M T W T F S
 1234
567891011
12131415161718
19202122232425
262728293031  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 33 other followers