After all the scanning and markings last week, I figured I was prepared for today's activities. New room, same pose (chin up and to the left, exposed chest, right arm up in a 'guide' to hold it above my head) on a hard metal table with all new machines -- for about 40 minutes. Both my shoulders were cramping so much by the time we were finished, I figured they'd fall off!!!
The purpose of today's visit was to complete the calibrations for radiation. I have two more new tattoos about 3" below the others along my sides. I've now fully examined every screw, fixture and finish on that freaking machine. My visualizations weren't working AT all, so I was just screwed. Fortunately, I didn't have to pee!!!
Anywho, they assure me that radiation will only last about 15 minutes, so I'll just be reminding myself of what FLYLady says "I can do anything for 15 minutes!" Hope it helps.
I start on Monday. Hopefully by then, the worst of this cold will be behind me. Al was sweet to share, but I really coulda done without this one, LOL!!!
xoxoxo
Sharon
Wednesday, October 29, 2008
Sunday, October 26, 2008
In Search of the Perfect Treatment Bra
I really love the bra style I've been wearing for the past few years. It's mostly cotton, fits well, is readily available fairly cheap at the Marts, and the cup fabric is thick enough for modesty, even in the coldest environment. However, it didn't pass inspection due to the exposed elastic band that runs the full circumference of my body. I'd planned to use my camisoles from surgery, but find the seam at the base of the cup to be rather uncomfortable when I'm vertical all day, so that's not an option.
I promised myself if I didn't need chemo I'd order some new slacks from Lane Bryant, so I checked out their sports bra selection, and added a couple of styles to my order. I'm hoping one or both of them will pass inspection.
Meanwhile, I stopped into Wal-Mart today to see what's available there. I found a fabulous one, but it only goes up to a 40 and I need a 46 or 48. The one style I that I tried on had a front closure, and the hooks and eyes weren't covered well, so they'd really rub against my skin. And the fabric was very lightweight -- no modesty happening there.
But after examining the fit, I caught a glimpse of my reflection in the mirror. Now that the swelling has subsided, my breasts are probably a full cup size different. I've known it's changed and I know it will continue to evolve in shape and texture during radiation, but it was really shocking to see the difference so clearly today in that bra. {NOT really evident in my regular bra!}
So it looks like I'll need to stash my cotton knit shirts -- which are pretty much EVERYTHING I own -- in favor of woven fabrics. Or maybe I'll bring back my vests and jackets as camouflage. Fortunately, the weather is cooling off so it shouldn't be too miserable. And my search will continue.
I promised myself if I didn't need chemo I'd order some new slacks from Lane Bryant, so I checked out their sports bra selection, and added a couple of styles to my order. I'm hoping one or both of them will pass inspection.
Meanwhile, I stopped into Wal-Mart today to see what's available there. I found a fabulous one, but it only goes up to a 40 and I need a 46 or 48. The one style I that I tried on had a front closure, and the hooks and eyes weren't covered well, so they'd really rub against my skin. And the fabric was very lightweight -- no modesty happening there.
But after examining the fit, I caught a glimpse of my reflection in the mirror. Now that the swelling has subsided, my breasts are probably a full cup size different. I've known it's changed and I know it will continue to evolve in shape and texture during radiation, but it was really shocking to see the difference so clearly today in that bra. {NOT really evident in my regular bra!}
So it looks like I'll need to stash my cotton knit shirts -- which are pretty much EVERYTHING I own -- in favor of woven fabrics. Or maybe I'll bring back my vests and jackets as camouflage. Fortunately, the weather is cooling off so it shouldn't be too miserable. And my search will continue.
Thursday, October 23, 2008
And on to Radiology
My first appointment with my Radiation Oncologist, Dr. Claudia Perez-Tamayo, was Wednesday. I gave Al a 'bye' on this visit because (a) he wasn't terribly fond of her when HE was her patient, (b) I knew it wasn't going to be a short and sweet appointment, and (c) he doesn't need to take any more time off work than necessary, and it just wasn't necessary. In the big scheme of things, my history with Al's cancer has certainly served me well; I know a bit more than your average patient what to expect along the way. And Pam's coaching hasn't hurt either!
The angel on my shoulder and I were ushered into the conference room 25 minutes after my appointment time (hurry up and wait some more!), where a lovely nurse named Carrie reviewed my 5-page self-completed history form. Then she fetched the doctor for a lovely, lengthy chat. I found her much more enjoyable than when Al saw her 3 years ago. We even discussed Nordie's at Noon and agreed it was odd that none of the four authors mentioned radiation as part of their initial treatment. She also found the book disturbing, though on different levels than I have, but it made me feel better all the same.
I love her analogy of why I need radiation after we've already removed the cancerous tumor. I'm not sure if she uses this for everybody or personalized it because I'm a gardener, but I liked it anyway. She said to liken breast cancer to Bindweed -- you can remove it from the garden by pulling it out of the ground (i.e., lumpectomy), and even digging out all the roots you can find (i.e., getting clean margins in surgery), but you have no idea where the Bindweed has reseeded itself. It's logical that those 'seeds' would be in the nearby area, so radiation is the Preen (pre-emergent that keeps seeds from sprouting into new Bindweed plants) that kills off the seeds of cancer so they don't grow somewhere else.
Understandably, the most common area for spread is to the lymph nodes, which would normally branch out from the breast and into the underarm and beyond, but we'll be irradiating the area from the lymph nodes along the breastbone across the chest to the underarm. The second most likely area for breast cancer to spread is the muscle wall of the chest and into the lungs.
Next stop was an exam room where she gave me a rather thorough examination and expressed concern that the antibiotics Ferg gave me weren't strong enough, so we're going to watch that closely. {Note: the infection has cleared up thoroughly and my incision and breast tissue have returned to a normal, healthy color.} She marked me in various areas with a turquoise Sharpie pen. Then she asked me something that surprised me a bit: "How happy are you with the results of your surgery?" I haven't really examined why she'd ask that until now . . . and I'm supposing it was to get a feel for how I was feeling about how it looks, my perspective on my treatment to date, or maybe testing my confidence in my surgeon, I dunno.
She said there's nothing to be done about the hematoma except the passage of time. Taking action for them most commonly leads to more infection and complications, so we'll be leaving it alone. {Note: it's decreasing on its own.} Then came the fun point of our conversation: I can't wear my bra while I'm having treatment. This was no surprise since Pam warned me about it, and my bra almost passed, except that it has exposed elastic around the base. So she recommended a sports bra -- and even showed me hers; that was unexpected!
Next stop took me around the corner for a CT scan. This was the trying, laborious part of the visit because it featured me lying on a freaking hard table nekkid from the waist up in a very cold room, with my (rather prominent) chin pointed up and toward the left, my right arm draped over an elevated guide above my head, and my left hand looking for something to hold onto so I would fit into the opening of the donut that is the CT machine. For an hour or so. After Bev had put little metal markers on all of the doctor's Sharpie marks. While Bev and Tiff looked at the CT, adjusted my position, marked me up with different colored Sharpies, looked at the CT, adjusted my position, repeat.
The finale, of course, was three pin pricks into my skin to tattoo me with India Ink in order to guide the cross hairs for my actual radiation. Unfortunately, she covered each of them (one between my breasts, and one on each of my sides) with a little strip of clear tape which has been extremely annoying but I'm not allowed to remove. Guess I failed to remind them of my sensitivity, no doubt inherited from my dad, to adhesives. My appointment was scheduled for 8 am, and I got to work (literally next door) about 11:30.
Tiff and Dr. Perez-Tamayo will use the data from the CT study to develop my treatment strategy. I return for my 'simulation' on Wednesday, the 29th. As I understand it, this is where they will complete the calibrations for the actual radiation, and I'll start my radiation treatments on either Thursday (I hope) or the following Monday (hurry up and wait some more). I'll have a total of 38 radiation treatments; so if everything goes as scheduled I'll be finished right around Christmas. I promised Al last year that I'd really get into the Holiday season this year, go all out decorating, baking, etc. We'll see.
The angel on my shoulder and I were ushered into the conference room 25 minutes after my appointment time (hurry up and wait some more!), where a lovely nurse named Carrie reviewed my 5-page self-completed history form. Then she fetched the doctor for a lovely, lengthy chat. I found her much more enjoyable than when Al saw her 3 years ago. We even discussed Nordie's at Noon and agreed it was odd that none of the four authors mentioned radiation as part of their initial treatment. She also found the book disturbing, though on different levels than I have, but it made me feel better all the same.
I love her analogy of why I need radiation after we've already removed the cancerous tumor. I'm not sure if she uses this for everybody or personalized it because I'm a gardener, but I liked it anyway. She said to liken breast cancer to Bindweed -- you can remove it from the garden by pulling it out of the ground (i.e., lumpectomy), and even digging out all the roots you can find (i.e., getting clean margins in surgery), but you have no idea where the Bindweed has reseeded itself. It's logical that those 'seeds' would be in the nearby area, so radiation is the Preen (pre-emergent that keeps seeds from sprouting into new Bindweed plants) that kills off the seeds of cancer so they don't grow somewhere else.
Understandably, the most common area for spread is to the lymph nodes, which would normally branch out from the breast and into the underarm and beyond, but we'll be irradiating the area from the lymph nodes along the breastbone across the chest to the underarm. The second most likely area for breast cancer to spread is the muscle wall of the chest and into the lungs.
Next stop was an exam room where she gave me a rather thorough examination and expressed concern that the antibiotics Ferg gave me weren't strong enough, so we're going to watch that closely. {Note: the infection has cleared up thoroughly and my incision and breast tissue have returned to a normal, healthy color.} She marked me in various areas with a turquoise Sharpie pen. Then she asked me something that surprised me a bit: "How happy are you with the results of your surgery?" I haven't really examined why she'd ask that until now . . . and I'm supposing it was to get a feel for how I was feeling about how it looks, my perspective on my treatment to date, or maybe testing my confidence in my surgeon, I dunno.
She said there's nothing to be done about the hematoma except the passage of time. Taking action for them most commonly leads to more infection and complications, so we'll be leaving it alone. {Note: it's decreasing on its own.} Then came the fun point of our conversation: I can't wear my bra while I'm having treatment. This was no surprise since Pam warned me about it, and my bra almost passed, except that it has exposed elastic around the base. So she recommended a sports bra -- and even showed me hers; that was unexpected!
Next stop took me around the corner for a CT scan. This was the trying, laborious part of the visit because it featured me lying on a freaking hard table nekkid from the waist up in a very cold room, with my (rather prominent) chin pointed up and toward the left, my right arm draped over an elevated guide above my head, and my left hand looking for something to hold onto so I would fit into the opening of the donut that is the CT machine. For an hour or so. After Bev had put little metal markers on all of the doctor's Sharpie marks. While Bev and Tiff looked at the CT, adjusted my position, marked me up with different colored Sharpies, looked at the CT, adjusted my position, repeat.
The finale, of course, was three pin pricks into my skin to tattoo me with India Ink in order to guide the cross hairs for my actual radiation. Unfortunately, she covered each of them (one between my breasts, and one on each of my sides) with a little strip of clear tape which has been extremely annoying but I'm not allowed to remove. Guess I failed to remind them of my sensitivity, no doubt inherited from my dad, to adhesives. My appointment was scheduled for 8 am, and I got to work (literally next door) about 11:30.
Tiff and Dr. Perez-Tamayo will use the data from the CT study to develop my treatment strategy. I return for my 'simulation' on Wednesday, the 29th. As I understand it, this is where they will complete the calibrations for the actual radiation, and I'll start my radiation treatments on either Thursday (I hope) or the following Monday (hurry up and wait some more). I'll have a total of 38 radiation treatments; so if everything goes as scheduled I'll be finished right around Christmas. I promised Al last year that I'd really get into the Holiday season this year, go all out decorating, baking, etc. We'll see.
Monday, October 20, 2008
Worth the wait
THIS time!!! I heard from my oncologist's office today; they had the results of the Oncotype Dx test. My score is only 11, which indicates I don't need chemo. Join me in saying
I don't know why it's not dancing, like it does here.
The test is a scale of 0 to 100, with 0 being the best. I go back to see the oncologist tomorrow, and I'm scheduled to see the radiation oncologist on Wednesday morning.
FINALLY, we can get this treatment moving along.
My infection appears to be improving. I'm off to apply a little moist heat, read a bit and hit the sack. Seems I've finally relaxed a bit, and I'm ready to pass out!!!
xoxoxo
Sharon
Friday, October 17, 2008
I've been crying a lot this week . . .
because of a book I picked up. It's called Nordies at Noon, and tells the saga of four women under age 30 in the Kansas City area who were diagnosed with breast cancer around 2002. One of them, Kim Carlson, spoke at Salina's Breast Cancer Awareness Forum this past Monday evening, a nice event that featured booths from several agencies and providers, door prizes, and the speaker followed by a Q&A session.
I don't particularly relate to any specific author in the book, and I haven't figured out why, but every time I spend some time reading this book, I cry. I suppose it's because I should cry about having breast cancer, and I have, and I occasionally do -- usually at the most inopportune times, of course. But what's the point? It accomplishes nothing! But I've decided to just give in and go with it. Seems to help bring the stress level down a bit, so maybe that's the point of crying.
Fact of the matter is, I don't feel any different than I did six months ago. Til I take my clothes off or stretch my arm a specific direction and there's my reminders, lol!
So, I had an appointment with Ferg (my PCP) today for my annual check-up. Not much change there than in previous physicals, just skip the Pap smear. She's so great; I'm really fortunate to have her in my corner. The two big points of the appointment were (1) she agreed with me that my incision looks too red to not be hosting some infection (so I'm now on some pricey antibiotics), and (2) I have a month to schedule a colonoscopy or I'll be hearing from her again. I think this is unfair, as I'm not 50 yet!!! But considering our family history of colon cancer, I'm not going to complain. I figure if I need to have a port installed, I'll schedule both procedures for the same day and kill two birds with one stone. If I don't need a port, I'll just do my I-don't-need-the-chemo conga all the way down to the hospital and just get the scope over with already.
Oh, yeah, one other thing now that I think about it. The lab that's doing my oncotyping called me after they checked with my insurance for the test (yes, it's covered). But she gave me a toll-free number to call to check the status of the lab work. So I called. Waiting is hard for me. But they didn't receive the sample until the 10th, and the labs take 10-14 calendar days, so I may not have my answer until the end of next week. Hurry up and wait some more.
I'm off to fetch my jammies and my book, and get to bed early. After I finish reading, I lie in bed planning the new flower bed Al's prepped out back. So far, it's been orange and purple, shades of yellow, bright reds with chartreuse, and PAINK (that's Southern-speak for seriously pink; I learned the term on-line). Hmmm, wonder how many variations of pink I could come up with . . . maybe I'll work at naming them as I'm falling asleep tonight.
I couldn't get to sleep last night for whatever reason, so I plan to make up for it in a big way tonight. And bonus . . . no alarm in the morning. WOO-HOO!!!
xoxoxo
Sharon
I don't particularly relate to any specific author in the book, and I haven't figured out why, but every time I spend some time reading this book, I cry. I suppose it's because I should cry about having breast cancer, and I have, and I occasionally do -- usually at the most inopportune times, of course. But what's the point? It accomplishes nothing! But I've decided to just give in and go with it. Seems to help bring the stress level down a bit, so maybe that's the point of crying.
Fact of the matter is, I don't feel any different than I did six months ago. Til I take my clothes off or stretch my arm a specific direction and there's my reminders, lol!
So, I had an appointment with Ferg (my PCP) today for my annual check-up. Not much change there than in previous physicals, just skip the Pap smear. She's so great; I'm really fortunate to have her in my corner. The two big points of the appointment were (1) she agreed with me that my incision looks too red to not be hosting some infection (so I'm now on some pricey antibiotics), and (2) I have a month to schedule a colonoscopy or I'll be hearing from her again. I think this is unfair, as I'm not 50 yet!!! But considering our family history of colon cancer, I'm not going to complain. I figure if I need to have a port installed, I'll schedule both procedures for the same day and kill two birds with one stone. If I don't need a port, I'll just do my I-don't-need-the-chemo conga all the way down to the hospital and just get the scope over with already.
Oh, yeah, one other thing now that I think about it. The lab that's doing my oncotyping called me after they checked with my insurance for the test (yes, it's covered). But she gave me a toll-free number to call to check the status of the lab work. So I called. Waiting is hard for me. But they didn't receive the sample until the 10th, and the labs take 10-14 calendar days, so I may not have my answer until the end of next week. Hurry up and wait some more.
I'm off to fetch my jammies and my book, and get to bed early. After I finish reading, I lie in bed planning the new flower bed Al's prepped out back. So far, it's been orange and purple, shades of yellow, bright reds with chartreuse, and PAINK (that's Southern-speak for seriously pink; I learned the term on-line). Hmmm, wonder how many variations of pink I could come up with . . . maybe I'll work at naming them as I'm falling asleep tonight.
I couldn't get to sleep last night for whatever reason, so I plan to make up for it in a big way tonight. And bonus . . . no alarm in the morning. WOO-HOO!!!
xoxoxo
Sharon
Monday, October 06, 2008
Hurry up . . . and Wait
Al & I met with my oncologist -- William Cathcart-Rake -- for the first time today. I liked him immediately, which always helps. He did a rather thorough exam and consultation, then proceeded to draw me three pages of pictures to tell me all the things I already knew. But I think it helped him summarize my status to himself, and made some of the details a little clearer for Al (like Hormone Receptors and HER2).
He confirmed everything else I've learned about the treatment process -- potentially chemotherapy, then radiation, and in my case, definitely hormone therapy (which is usually part of the process) for FIVE years. Considering that my tumor was very small, my hormone receptors are very high, my HER2 is negative, my margins are clean, there's no cancer in the lymph nodes, and the BRCA was negative, he feels chemo won't be needed, to the tune of 90% certain.
Then he got all excited to surprise me with this test that's only been available for about a year, which is the Oncotyping I mentioned in an earlier post. So he wants to do the oncotyping because we can find out what my potential for recurrence would be, and then we'll know for sure whether chemo is necessary. Cut to the chase, we're going forward with the Oncotyping, which will take somewhere between 1-2 weeks, so if I haven't heard from them in two weeks, I'm to call them. So he basically told me exactly what I wanted to hear.
If I do need chemo, he recommends installing an Infuse-A-Port like Al had (especially since we always have so much fun locating a useful vein when I need an IV). Then I'll have a 'short course' of chemo, which would be four treatments spaced three weeks apart.
Either way, I'll get going with the hormone therapy soon; for pre-menopausal women, that would translate to Tamoxifen. For post-menopausal women, there are three 'aromatase inhibitors' (Arimidex, Femera or Aromasin). This is not the old Hormone Replacement Therapy they used to do for women after menopause or hysterectomy. This type of hormone therapy provides a drug to fill those hormone receptors, so that any remaining cancer cells cannot grow (remember, cancer cells feed on hormones to survive).
Good news is that it's just an oral medication; bad news is that I don't have prescription drug coverage and it runs about $300/month. Fortunately, he's also confident that they can get the drug company to provide it to me. (whew!)
And he gave me a DVD to watch that I believe features him and was created by the Femera people that's all about breast cancer. Haven't watched it yet; I told him I'd been doing a lot of reading at the NIC website, and he encouraged that but still encouraged us to watch the DVD.
He assured me that I'm healing really well, complimented my surgeon for the incision on my breast -- he thinks I'll have to show people where the incision was once it's fully healed -- and reassured me that it's OK to still have some swelling. He felt that was caused by a collection of blood in the surgical site (a hematoma), and assured me it would smooth out under my skin as it healed (it's rather lumpy now).
So, all in all, it was a really good visit. And I've been catching up a bit on the sleep I missed out on last night. Now I'm off to the kitchen to make some Oatmeal Raisin (his favorite) cookies for DH, because he wants to take some to 'the guys'. It's only fair, as I made a triple batch of (my favorite) Chocolate Chip cookies for my office and the folks at the Cancer Center.
Keep watching this space, and thanks for all those calls, e-mails, cards and prayers!
xoxoxo
Sharon
He confirmed everything else I've learned about the treatment process -- potentially chemotherapy, then radiation, and in my case, definitely hormone therapy (which is usually part of the process) for FIVE years. Considering that my tumor was very small, my hormone receptors are very high, my HER2 is negative, my margins are clean, there's no cancer in the lymph nodes, and the BRCA was negative, he feels chemo won't be needed, to the tune of 90% certain.
Then he got all excited to surprise me with this test that's only been available for about a year, which is the Oncotyping I mentioned in an earlier post. So he wants to do the oncotyping because we can find out what my potential for recurrence would be, and then we'll know for sure whether chemo is necessary. Cut to the chase, we're going forward with the Oncotyping, which will take somewhere between 1-2 weeks, so if I haven't heard from them in two weeks, I'm to call them. So he basically told me exactly what I wanted to hear.
If I do need chemo, he recommends installing an Infuse-A-Port like Al had (especially since we always have so much fun locating a useful vein when I need an IV). Then I'll have a 'short course' of chemo, which would be four treatments spaced three weeks apart.
Either way, I'll get going with the hormone therapy soon; for pre-menopausal women, that would translate to Tamoxifen. For post-menopausal women, there are three 'aromatase inhibitors' (Arimidex, Femera or Aromasin). This is not the old Hormone Replacement Therapy they used to do for women after menopause or hysterectomy. This type of hormone therapy provides a drug to fill those hormone receptors, so that any remaining cancer cells cannot grow (remember, cancer cells feed on hormones to survive).
Good news is that it's just an oral medication; bad news is that I don't have prescription drug coverage and it runs about $300/month. Fortunately, he's also confident that they can get the drug company to provide it to me. (whew!)
And he gave me a DVD to watch that I believe features him and was created by the Femera people that's all about breast cancer. Haven't watched it yet; I told him I'd been doing a lot of reading at the NIC website, and he encouraged that but still encouraged us to watch the DVD.
He assured me that I'm healing really well, complimented my surgeon for the incision on my breast -- he thinks I'll have to show people where the incision was once it's fully healed -- and reassured me that it's OK to still have some swelling. He felt that was caused by a collection of blood in the surgical site (a hematoma), and assured me it would smooth out under my skin as it healed (it's rather lumpy now).
So, all in all, it was a really good visit. And I've been catching up a bit on the sleep I missed out on last night. Now I'm off to the kitchen to make some Oatmeal Raisin (his favorite) cookies for DH, because he wants to take some to 'the guys'. It's only fair, as I made a triple batch of (my favorite) Chocolate Chip cookies for my office and the folks at the Cancer Center.
Keep watching this space, and thanks for all those calls, e-mails, cards and prayers!
xoxoxo
Sharon
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