Sunday, April 30, 2017

5102 Radiation Flagellation

 Sunday, April 30, 2017

Sometimes you can't really know what someone is saying to you. You hear the words, but sometimes the words carry a meaning different from their dictionary definition. If you have no other basis for interpretation, you interpret from your own base. In an intimate relationship, the only way to fully understand the other person's messages, or lack thereof, is to understand their motivations, how their mind works, what their concerns and priorities are. If you don't understand that, you don't have an intimate relationship. You're just skimming along the surface. -- Me --


 Taking a shower the other day, I found myself wishing someone would invent MY shower.  It's kind of like a car wash.  Jets shoot water straight out from the wall for the full length of the body (temperature, height, and pressure adjustable).  Then you push a button and soapy water comes out of the jets, covering you in foam, and then shuts off.  There's a pause while you can either scrub yourself, or stand next to a rotating bar covered with strips of that stuff that's used for those scrubby puffs (you know, the material that doesn't hold water and rinses clean) which slaps you like a mean massage.  Another button gets you a full body spray rinse with clear water.  Another button gets jets of hot air.  Clean, dry, and done.  If it's good enough for cars and dishes, why not for people?  I want this!


In many Victorian novels, a woman is described as having a "long upper lip"  (or sometimes a short one, but usually long).  I was never too sure how to picture that.  Is that a wide mouth?  Then why not describe it as a wide mouth?

I recently found the answer, I don't remember where, but here it is.  That central groove from the nose to the upper lip is called the philtrim, and it's the philtrim that's described as long or short.  So a woman with a "long upper lip" doesn't have a long lip at all - it's that she has more distance between her nose and mouth, and that was once considered more aristocratic (a long face).


I'm almost finished with the radiation.  The last should be May 8th, I think.  I say "I think" because they keep changing things on me.  

Back when the plan was based on the needle biopsy lab results, I was told I'd have a lumpectomy, four rounds of chemotherapy, then 33 sessions of radiation, and then an anti-estrogen for a few years.  After the lumpectomy, after someone (oh, yeah, that was me) thought to check the lab results on the excised tumor and it was discovered the report was drastically different (I still think they screwed up and mixed up my needle biopsy with someone else, because it's so very different), I was told when starting chemo that I'd have six rounds instead of four.  That grew to eight.  

When I started radiation, I was told I'd have 28 sessions of whole breast, and 5 "boost" sessions at the end, which is electron (I think) radiation focused on the tumor bed, for a total of 33.   Last Tuesday was session number 24.  

My regular radiation oncologist was on vacation last Tuesday, so I saw a different doctor, and he was concerned because my skin was peeling in the crease under the breast, so he decided my skin needed a break, so the next day we'd start the boost, and then finish the "last two whole breast sessions" at the end.  I pointed out that there would actually be four more whole after the five boost, and he said there'd be seven boost, not five.    My head is spinning.   I wish they'd stop changing things on me.

Another reason this bothers me is that everything I've read cautions that the whole breast radiation must not skip any sessions, since it must be tightly consecutive to be accumulative (I guess weekends don't count, eh?).  And there was one Monday we had to skip because the machine was down.  So, uh, will those last two be wasted effort?  

I hope the regular guy is back by next Tuesday.  I'll have the fifth boost that day, and maybe he'll say to go back to five?  


Everybody says that the radiation doesn't hurt.  That's true.  The machine buzzes for a few seconds, and you feel nothing.  Everything else I read said there may be some skin problems, like a bad sunburn.  Sometimes the skin gets really bad, like blisters, weeping, and yuck.

I've got a lot of red.  The worst part is in the crease under the breast.  That got fiery red, then grey, then started to peel (but no blisters).  That's why the substitute doc decided to "take a break" and do the boosts now.  Where it peeled it's new pink skin, and it's not at all painful. None of the skin is painful.

But everywhere I've read has said the internal breast shouldn't hurt.  Some of the scar tissue in there might get hard and ache, stuff like that.  But wow!  I HURT!

I mention the pain in the breast to the doctor every Tuesday, and he just passes it off.  Like he thinks I'm hysterical or overreacting.  On the outer side, toward the underarm, it feels like someone has grabbed a handful of breast inside and is squeezing and twisting it.  Not all the time.  Randomly, a few times a day, for like 20 seconds, which is long enough, believe me!  On the inner side, near the sternum, that's like bee stings inside there.  Three times in the past five days it's felt like someone was stabbing me over and over with an ice pick.  Twice I was driving home from a session, on the Garden State Parkway at the time, and had to pull over until it stopped.  I hiss and ouch ouch ouch with every stab.  

I can't wait to stop beating myself up


the queen said...

It seems like they don't look at you, but I bet they are looking at your tests. You might say you feel fine, but your tests say you don't. You might say you hurt, but your tests say "keep doing what you're doing." And it sounds like your tests are jerking your doctors around. They seem fine to us but they don't say what the doctors think they should say and then the doctors have to coax them into the right response. It happened all the time with mom and her lung Doctor. "How do you feel Margie?" "Pretty good." "Well your tests say you're very sick."

Anna, Sweden said...

Something like YOUR shower is shown in the beginning of the movie Shower from 1999. I can recommend it! Read more on It's about a Chinese family who owns a bathhouse.

~~Silk said...

Anna, thank you. I would have expected "my" shower from the Japanese - after all, they've perfected the toilet and the soaking bath (even though they don't seem to have figured out home insulation and heating), rather than from the Chinese. The Chinese are better at clothing and beds. I went looking for "Shower". Found a lot of reviews and a lot of short clips on YouTube. On Amazon I could download a rental copy, but can't find a DVD for the US, or a place to watch it free. I finally gave up and just idly watched the trailer at, and THERE IT IS! That's almost it! I wonder if it really exists, or if it was created just for the movie to emphasize the difference from the father's bathhouse and lifestyle. If it doesn't really exist, it should.

rockygrace said...

You're incredibly strong to be going through all this treatment. And now you're almost done! Congrats on being one tough woman.

KJL said...

The stabbing pains are from the radiation - we don't know what causes them but we warn our patients to expect them. They will fade out after the radiation; you'll wake up one morning in a few months and think, "I haven't had one of those horrible stabbing pains in a while."

By switching to the boost, you aren't getting any break in treatment. The tumor bed keeps getting treatment right on through without a loss of efficacy. Did they give you Silvadene ( a prescription burn cream) to use in the inframammary area? It speeds the healing and reduces risk of secondary infection from a break in the skin.

Given that you have some skin breakdown, switching to 26 to the whole breast and 7 boosters just to the tumor bed (a much smaller volume of tissue) is perfectly reasonable. In well endowed women, the skin reaction can be more intense and that change (instead of 28 + 5) is a good idea. Either way, the cure rate will be the same. Glad to hear there's an end in sight :-)

~~Silk said...

There wasn't really any skin breakdown, not as I would describe it, anyway. It was just a thin peeling, one layer, even less deep than I might usually get from a sunburn. (I am very fair. The skin on my tummy and legs that never see the sun is white white white. I have to wear hats in the summer or my scalp burns.) I used 100% pure aloe vera the whole time. The technician ladies and nurses (whom I trust even more than the doctors) said I did remarkably well. It's now two days since my last zapping, and except for the circle where I got the boosts, which is still reddish, the color on the breast is fading. It's now about the same color as my forearms - slight tan. I am seeing some dryness. I think on Monday I'm going to switch to Eucerin (however that's spelled) for the dryness.

~~Silk said...

Oh, yeah, the stabbing pain! The doctors just shrugged. But day before yesterday I mentioned it to one of the radiation oncology nurses, and she said, yeah, that's normal, and it might take a few weeks to go away. I've had it only once in the past few days, and somehow having had a nurse say "normal", I feel so much more relaxed about it.

Nurses are wonderful.

KJL said...

Yep, our nurses are awesome...but your doc should know this stuff . We use good old fashioned Palmer's cocoa butter lotion after radiation. It works great to get rid of the radiation changes but Eucerin is a good second. It seems a little greasy to some of our women.

~~Silk said...

I have a huge jar of cocoa butter sitting on the kitchen counter! Someone had recommended mixing it with tea tree oil to use as deodorant during the treatments, but I never got around to it. If Eucerin is greasy, that will make me unhappy, so maybe the cocoa butter will get some use after all.