Archive for October, 2008

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.

01
Oct
08

October 1, 2008

Revisiting my post about optimism vs. pessimism, and the benefits of having a positive attitude:

I’ve been thinking about it since then, and what constitutes pessimism and optimism.

I ran across a blog post by Donna Trussell called Cancer Is So Limited? I Beg to Differ. I laughed out loud – she is a good writer with an acerbic sense of humor. I also thought “This is a very angry woman”. Reading later posts confirmed that in my mind.

Cancer makes you angry. Call it one of the stages of grief, call it a reaction to fear, call it stress releasing itself in emotion; anger it is. Cancer makes you feel a lot of emotions, most of which you’d rather not feel – fear, grief, anger, sadness, isolation, despair.

With Breast Cancer Awareness month upon us, you can’t turn your head without bumping your nose into pink products, billboards, news articles/videos, e-mails, and yes, blog posts, most touting the message to *do your self-exams!*. But even the media, for all that it wants to promote the “look at the pretty survivors, you can too!” idea, cuts the message with harsh ingredients, like the video I saw today on CNN.com called “Help for Cancer Victims”.

If that little word “victim” doesn’t make a cancer patient despair, then it will probably make them angry.

And this is the thing about optimism and pessimism – anger is not the opposite of hope. Both hope and anger are on the side of not being a victim. If you can’t feel warm and fuzzy about having cancer, get angry! Don’t let cancer victimize you, and don’t let the “positive attitude Nazis” victimize you either. You don’t have to feel positive feelings about getting cancer, fighting cancer, surviving cancer. All you have to do is get through it, and if getting angry helps, be angry.

It’s what you do with the anger, though, that counts. If you use it to focus on the fight, and on survival, anger can be a positive emotion and a positive force. If you use it to bludgeon the people who want to help you, then it might destroy you if the cancer doesn’t get you.

I can attest to cancer causing one to be angry – when I had my worst fears confirmed by the biopsy results this August, I was furious at the surgeon who didn’t get it all, at the doctors who decided I didn’t need radiation the first time, at the failure of the chemotherapy to kill off the remaining cancer cells, at having maimed my body for nothing.

But after allowing myself to feel the anger, the sense of unfairness, the “why me” (shit happens, that’s why), I chose to let go of these feelings, and focus on being me. I still don’t see the positive attitude that others perceive in me – I’m just living my life, rather than living my disease. The same things that made me laugh before make me laugh now; the things that touched my heart before touch my heart now; the things that made me angry before, well, some of them still make me angry, others I’m learning aren’t so important.

In her latest post, The Stupid Cancer Show, Trussell writes about the lies one hears as a cancer patient. One of the types of lies is “other cancer survivors lie to you”, which would also mean that they’re lying to themselves.

“Cancer is the best thing that ever happened to me.”

Some of the people in my support group talk about how cancer turned their lives around – and I think they really believe it, rather than grasping at any frail straw that puts a positive spin on an extremely negative situation. I mean, they ought to know if they’re in a better place mentally, emotionally, and spiritually.

Is it the best thing that ever happened to *me*?

No.

On the other hand, I can’t deny that it has made me re-evaluate priorities in my life, made me less inclined to take things for granted, helped me learn to connect with people better, and work to eliminate leftover destructive behaviors that I haven’t conquered yet. Will this last as I come out the other side of the Cancer Fun House? I certainly hope so, I plan on it, and I’m going to do my best to make it so. I feel sad that these positive changes took getting cancer to bring them on. If I were you, I’d just cut to the chase, make those life changes you keep thinking about, and skip the cancer.

And it definitely is not the best thing that ever happened to me – that, in one word, is Brian.

So I will continue to strive for the positive attitude spectrum, because it suits me, and who I want to be – not a shill of the cancer establishment, not a self-delusional cancer victim, not the me-with-cancer or the me-the-cancer-survivor, just me. That will no doubt include occasional bouts of anger, grief, and other negative emotions; but also laughter, joy, and love.

When I want to feel inspired and hopeful, I will visit Cancer Cannot Have Me.

When I need to come back to earth (or for a good laugh), I can always visit Donna Trussell or The Stupid Cancer Blog ;-}




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