First week of Radiation, plus a setback in PT

I have now completed the first full week + two days of my radiation therapy. Last Wednesday (earlier than I had expected it could happen), I had kind of a practice run, and then real radiation treatments on Thursday and Friday. This week I've had five more treatments. I have radiation daily, M-F, through the start of September. I've got six and a half weeks total, or 33 treatments. The radiation is targeting the whole breast as well as the lymph nodes in my armpit and those near my collarbone on the left side. The last week of treatments will be a boost to the area where they removed the tumor lump from my breast. 

some bulbs I've nearly finished, underglazed and now waiting for glaze

Why my treatment has to be so long

I had some trouble, and apparently keep having a bit of trouble, understanding why the treatment has to last so long. I'd read about accelerated whole breast radiation (or hypofractionated radiation therapy for breast cancer) and couldn't understand why "new guidelines" from 2018 for speeding up treatment wouldn't apply to me.  I asked my doctor last week why my treatment couldn't be sped up. She explained that my treatment couldn't be accellerated because I'd already had chemotherapy, which pacified me for a week until I started to write this post and fell down the same rabbit hole, again, when I saw the bullet list from the BreastCancer.org article that says "The decision to offer hypofractionated whole-breast irradiation should not depend on...previous chemotherapy." I reread the PubMed article (I've read a whole lot more medical research reports this year than ever before in my life!) and did, eventually figure out that my issue is the combination of lymph nodes and previous chemo. 

a detail of the underglazing process of a sculpture I'm working on

Not only is there a lot of dense information out there, and not only does breast cancer have a lot of complications and variables (hormone status, HERS2 status, nodes, size, and grade), but when I read about it, I'm not an unbiased reader. Especially in this case, I wanted to find that my treatment could be done more quickly, so I had trouble finding or understanding why it couldn't.

the sculpture with the orange underglaze layer partly removed

As my doctor originally, said, and as I finally accepted (twice), because I've already had chemotherapy, a systemic treatment that impacts the whole body, not just the breast, the increased dose of accelerated radiation risks causing scar tissue to my lymph nodes. If the cancer had never been in the lymph nodes and I'd had chemo, I could have tolerated the increased dose of radiation to just the breast that is delivered in the accelerated approach. The unspoken part of this, too, is that my lymph system is already working at a deficit because I'm missing 15 or 16 nodes (because they were removed).

the orange underglaze removed, ready for glaze

Radiation & preparation

Wednesday's practice was longer than the actual treatments, as they were checking that everything worked right, I think. The pillow thing ("cradle") they made for my arms was apparently unusually wide, as they had to kind of break off part of it to get the machine to fit on the right side. (When I walked into the room for the practice, one of the radiation techs who hadn't met me before said she was surprised I was so small given the size of the cradle). They also changed the position of my right arm from what it had been during the planning CT scan. That means that my right arm doesn't go into the molded position of the pillow. It also means that every few days, when a new person is working in the radiation room, they will tell me that my arm is in the wrong spot. I suspect it may contribute to the feeling of loosing blood flow to the fingers of my right hand.

bulbs in the kiln with the first underglaze layer or waiting for their first bisque firing

The radiation itself is pretty quick. I walk into Northstar, tell the person at the front desk (who usually already knows my name) that I don't have COVID symptoms, then walk directly into the changing area and grab a gown. The gowns are sized for people who are much taller and much larger than I am. It's unfortunate, because with how warm it has been, I don't really want extra fabric on my body, luckily they let me leave my shorts on, so I can just leave the gown wide open in back for a pleasant breeze.

I thought the gown was big on me, but then a smaller woman walked in and hers just about dragged on the floor!

Depending how early I get there, I wait next to the changing rooms for anywere from 1-10 minutes (though, honestly, the first day was the longest wait and usually if I show up early, they get me in early). Then a radiation tech comes to take me back to one of two radiation rooms. Since they make me take off my watch when I change, I'm not sure exactly how long the whole process takes, but I timed the process from watch off to watch on again after I get dressed and that was 12 minutes. In the radiation room, I lay down on the bed thing, get my arms and head positioned in the pillow depressions and the techs running the machine put a lift under my knees and a foam foot holder in place (presumably to keep me still and in the same position each time). Usually the knee holder is slightly sideways--I assume this so that I don't get too comfortable.

The cradle thing that positions my arms looks more like the "inferior vaccum bag form" on the right, though it isn't blue. Image from Smither's Medical Products.

Next they check the tattoo(s) on my side to make sure I'm positioned right. They've only adjusted me twice, which worried me at first, since it seemed too easy.  They position me using a couple of laser lines. I can see myself in the reflective glaze in the ceiling and also in the reflective part of the radiation machine. From above, the lasers form a green + across my chest and left arm and up the side of my body. They cross near my shoulder. From the side view of the reflective glass in the machine, the one laser line follows the countour of the breast being treated.

This diagram form the Mayo Clinic shows what's happening in the machine, and also gives a pretty good approximation of how I'm positioned

After checking my position based on the tattoo on my side, they have me take a breath and hold it so they can check the tattoo near my shoulder. They rub the bottom of a block thing (to warm it up, I think) that looks like an alarm clock and put it on middle just below my breasts. This block somehow tells them if I've taken and held my breath correctly. Someone says "twelve point nine" and part of the radiation machine whirrs itself over to my right side where it almost touches my elbow. This is the part where they needed to hack away part of the pillow during the practice session last Wednesday.

This picture is similar to what I experience, and shows the round part tilted to the side. I found the image on RadiationInfo.org

Every day except for the second Thursday, the sequence has been the same. They say that we are ready to start and the techs exit the room. Then someone on the intercom tells me to take a breath and hold it. The machine whirrs a bit, then stops and the tech tells me to breath. Both the bed and the other parts of the machine can move. When we start, the biggest part of the machine, a round white part roughly two and a half feet wide is looming over me at about a 45 degree angle, nearly touching my elbow and the cradle. This has a ten inch piece of glass (that I can see my body and the laser reflected in) with metal teeth things behind it. The teeth are long metal pieces with pointed ends that can open and close all together or separately. I looked it up, and this is called a collimator. As I had guessed based on watching it in action, it is used to control the shape (and size) of the radiation beam.

The collimators on the machines I use look a lot newer and more friendly than this picture from the cyclotron at University of Washington (image from Wikipedia)

Next the metal teeth-looking parts of the machine close most of the way. The teeth are behind glass and can all move together or move independently. That part of the machine starts on my right, very close to my body and face. The first breath hold is in that position and lasts about 10 seconds. Next the teeth move, then the collimator moves to be directly above me. The short breath hold is followed by two long breath holds each lasting about 20-25 seconds (as measured by my highly inconsistent counting methods). The collimator moves to my left and I don't know what it does over there because I'm required to look to the right the whole time and my reflective surface doesn't extend that far. I have another short breath hold with the machine on that side. Then it's all over, but I have to wait for the techs to lower the bed thing which has raised up while I've been prone.

How I'm handling it

After the first few times, I was worried, actually, that it was so easy. They've only corrected my breathing once (told me to let a bit of air out) and they've only adjusted my position twice. It felt too unlikely that I got myself into the exact right position on the first time every day. But I've now met with my radiation oncologist twice (last Friday and this Thursday) and she said that I was doing great with my breath hold (yes, I was complemented by a professional on my ability to breathe). 

a batch of bulbs after the first underglaze layer was fired in place, waiting for the second

Thursday I was mildly alarmed that the order of the machine's movements and the timing of my long and short breath holds was different. The technicians explained that at the end of each week they'd do something a bit different. I didn't understand it, but I was mostly just checking for them to say "oh no! we gave you somebody else's radiation today" or something, so I was happy when that didn't happen. 

the first layer of underglaze on a port-a-cath bulb

So far I don't appear to be having a skin reaction to the radiation. Everything I've read or been told by folks who've done radiation makes me think my best shot at avoiding a painful skin reaction and/or the fatigue that many people complain about is to apply lotion to the area every day, wear loose clothing that doesn't rub or constrict the area, drink plenty of water, and exercise. The nurse and doctor both said that they can't really predict if I'll have a bad reaction, but suggested those same things to try to prevent it. Apparently being on the smaller side is a potential advantage, as more breast tissue can mean a worse reaction. On the other hand, it sounds like pale and/or sensitive skin might also mean a worse reaction, so I'll just have to wait and see. Women who've had radiation say that the reaction is worse the longer the treatment goes, and mine is longer than most I've heard of.

the first layer of underglaze on the low areas of a bulb

I'm presenting all this calmly now, but last week I was nearly in tears from how worried and generally stressed out I was about starting radiation. I was disappointed that the 5-6 weeks of radiation predicted in December had become 6.5 weeks. I hadn't realized how much I was counting on more time between radiation and the start of the Fall quarter at YVC. Northstar got me in faster than I thought they'd be able to last time I posted, but the extra surgery and the recovery time after surgery extended the timeline beyond what I'd been hoping back in December or April. 

As it stands, I will be finishing radiation on September 6 (my previous estimate ws that September 7 was the earliest time possible, and I'd forgotten about the holiday). Convocation for faculty and staff at YVC starts the next week (with students returning the week after). I'm doing everything in my power to set myself up to be not fatigued (exercise) and not in pain (lotion and hydration) in the last weeks of radiation and the time right after, but I've had some setbacks on the exercise side of things. The last weeks of radiation and the weeks right after are when others tell me they had the hardest time. Worrying won't help, and I can't change the weather, so I'm trying to keep my focus on what I can do today.

interior view of my studio during the 2021 Tour of Artists' Studios

Tour of Artists' Studios over Labor Day weekend

With the assumption that I'd probably be done with radiation by then, I agreed (months ago) to have my studio on the Yakima Artists' Studio Tour over Labor Day weekend. I did this last year and I like the idea of the tour coming to my house, rather than having to bring myself somewhere else. My colleagues and friends, Chris Otten (photography instructor at YVC) and Monika Lemmon (painter, mixed media artist, and soon to be drawing instructor at YVC) will also be at my house and I've told them if I feel bad they're in charge of all the hard stuff.

sign from last year's Tour

If you would like to visit me on Labor Day, my studio will be open Saturday and Sunday from 10-4 and Monday from 10-12. Tickets are $10 each and you can purchase them from me ahead of time or when you get to the studio. You can also buy them from other artists and locations, but I make more money if you buy them from me. I am hoping to have some of my new port-a-cath mugs and bulbs and sculpture done before the show (and some bowls, too, if I really get motivated), but my studio time has been unpredictable this year and this summer.

port-a-cath and heart-a-cath mugs waiting for glaze

Physical Therapy & a little set back

I also started Physical Therapy (PT) this week, in addition to continuing my Occupational Therapy (OT). The OT (at the lymphedema clinic) is mostly focused on increasing my range of motion and preparing me for how to prevent lymphedema, as well as how to recognize the symptoms of lymphedema. I've learned and have been doing some exercises to increase range of motion in the left arm (after they cut into it and removed a bunch of lymph nodes). I've also learned and have been practicing lymphatic drain massage, which is intended to "prime" the lymphatic system and help drain lymphatic fluid away from the arm and the side of the body where the surgery was and the radiation continues to be. Radiation is (hopefully) the most taxing thing that's going to happen to the weakened lymph system on that side.

the cats know it is too hot 

The PT is also focused on increasing range of motion, as well as increasing strength. The exercises she has me doing involve a bit more of my body, with the idea that other muscles in the back, trunk and shoulder support the arm. My physical therapist also talked with me about how to adjust my position so that I don't get backaches while typing on the comptuer for a long time. My goal is to get back to regular exercise and weight lifting, but this week I had to readjust my ideas of how fast that might happen. 

My PT had me take a picture of myself at my desk. Here's what I'm doing wrong: feet aren't flat on the ground, upper arms should be parallel to my body, forearms should be supported, computer screen should be lower, back should be supported

I have radiation every day and was scheduled for OT and PT on Tuesday, but OT called and said that those three things in one day were too much, especially in combination with the high temperatures this week (highs have been 107-110 this week). So I did PT and no OT that day. PT Tuesday was mostly first-day kinds of stuff, like getting my history and checking my range of motion and posture. At this point, the history of my medical experience this year takes some time to relate. We also did a few exercises and she gave me some homework stretches.

We don't have AC or insulation upstairs, so the cats intentionally choose the hottest spots in the house

That night, Tuesday, I walked down to Davis at the end of Alison's band practice with the idea that I'd walk home with her. It was 9pm, but still 91 degrees out. I only walked two blocks, but they were late getting ou. Basically I was out in 91 degrees, no sun, for 10 minutes, including a casual walk (downhill) and standing around. But the heat bothered me so much that after 5 minutes of waiting, I started back home. My OT had told me to watch out for being outside in very hot weather for too long. I think she said above 103 for 15 minutes. This wasn't that, but I still got scared. My husband happened to be driving home right then, so he actually picked up up a block from home and drove me home!

melty warm stretches

My OT said that I could do up to 20 minutes of exercise every other day, but I needed to keep it low impact and I couldn't use weights. So Wednesday morning, following her instructions, I did a (modified) 20 minute indoor cardio workout video which seemed fairly mild compared to what I used to do. It didn't seem like a strain, but by the end of the day Wedesnday, the side of my chest under my arm had swelled a bit. It isn't clear whether the swelling was from the heat or the exercise (or the radiation), but when I saw her on Thursday, my PT suggested I reduce my activity to just 10 minutes every other day. 

Alison trying to train the cat to do indoor exercise, too

It feels very strange to do so little, especially as I've been advised that I should be exercising during radiation to ward off the fatigue. This week, there really isn't anytime when I can walk outside, let alone run (or jog). Last week I was avoiding walking between 10am and 5pm, but this week even getting up at 7am or walking after 9pm didn't work, since it never gets cool enough during that time. Maybe I could walk in the middle of the night, but I'm not sure that's a great choice in my neighborhood. Instead I've been driving to Target or Lowe's to walk inside.

the weather on Tuesday night at 9pm (91 degrees), and forecast for the week (108 on Wednesday, 110 on Thursday and Friday)

I went back for a second PT appointment on Thursday and we did more than on Tuesday, though my idea of what I "should" be able to do by now and My PT's idea of what I actually "should" be doing right now to ease myself back into my previous routine are not perfectly simpatico. She started me on an exercise machine that was a bit like a recumbent bike. There was a place for my feet and bars for my hands, though she didn't want me to use my feet. The wildest thing, to me, was that she turned the seat 90 degrees to the side, then had me sit, then turned it back to front-facing before I began. She had me gently use my arms to pump back and forth for about 2 minutes, then she turned the seat to the side again before I got up. Meanwhile, I'm thinking that last time I was on a similar machine, I did 20 minutes of intense rowing! Of course, that was way back before Covid when I used to go to the Y (without a mask).

I feel like I've been assigned the cat-level of exercise

After the rowing, we did a variety of arm exercises, while my PT corrected my positioning. I tend to arch my back backwards to get my arm up higher and I tend to lift the left shoulder. She says this is normal in folks who've had a surgery like this, as we instinctually do that to protect the shoulder. The challenge is to work against that instinct, while increasing strength and range of motion.

Another sculpture I'm hoping to have finished for the Labor Day Tour

Of course the other challenge is to be patient with the process. I still have some swelling today (three days after I first noticed it), though I've been avoiding the heat and continuing to do the lymphatic massage. It doesn't appear to be worse, but I think I'll feel better once I see my OT on Tuesday. I anticipate that I'll be gently scolded for overdoing it, but I'm hoping she'll also be able to give me a sense of how concerned I should be and if there's anything else I can do to make it reduce. The PT, on Tuesday and Thursday was very good at helping me understand better the parameters of what I am and am not allowed to do, which I appreciate very much, even if it is annoying to have these restrictions.

Cancer is stupid; Radiation CT and Waiting, again

cw: cancer, needles, complaining

Radiation planning CT

I had my radiation CT on Friday. They needed to take a CT of me (or several) while I was positioned with my arms above my head so that my radiation oncologist could plan the path of the radiation treatment. They also drew all over my chest, took pictures, and gave me two tiny tattoos on either side of my body so that they can line me up correctly next time.

after my appointment, the marker on my chest balances my port-a-cath scar on the other side

I knew I would have the CT and what it was for. I had been tentatively scheduled to get it the week before, but I wasn't able to lift my arm high enough. Instead, I had an extra occupational therapy (OT) appointment that day. By Friday, after doing my new OT arm exercises for most of two weeks and after 3 OT appointments, I was able to get my arm high enough for the CT. 

my collapsible "shoulder wand" (also known as a stick) for OT stretches 

I was surprised how difficult it was to get my arm to that level even with the extra time and OT. I've been working on getting my arm straight up above my head (not quite there, but close) and I've also been working to push my elbow down/back while my arms are in a butterfly position behind my head. 

They want me to re-ink this Sharpie X so that it stays visible for when I come back for my next appointment. They even gave me my own Sharpie (which I promptly forgot in the  Northstar bathroom)

The position I was in for the CT was a looser position than what I was practicing, more of a cross between an arm butterfly and cactus arms (or the position you put your arms in to yell "touchdown"). Getting there was fine. Basically the technician just asked me to put my arm up and out as high as I could comfortably get. But then he had me stay there for nearly 40 minutes. In all my practicing, my OT said to hold for a count of 3. I think maybe I should have been holding in a less dramatic position for a longer count.

my new tattoo (in the x) plus a freckle for size comparison

After I got myself into position on the CT bed thing, the guy adjusted the pillow thing. The plan is to keep my arms in the same position each time I get radiation, so they have this customizable pillow. It didn't look like much--just a pile of white fabric--but it felt like a thin bag of the little foam beads from a bean bag chair. They were loose when I laid down and after I was in position, he kind of held up the sides and somehow removed the air (that's what he said, otherwise I wouldn't be able to tell) so that the end result was a custom shaped pillow with arm and head indents for me. 

the last time I was in the studio I started press-molding a bulb, but didn't get back to it until it was too dry

I say that I was in position for about 40 minutes, but I didn't have to hold it constantly. I was given two breaks to rest my arm in between setup and again later. When I put my arms back up in position, they slotted into the pillow just right, as did my head, which was turned to the side for the CT. After the initial setup, the guy asked how I was feeling and I was surprised to realize that the discomfort in my left (surgery) arm had eased, but my right arm was going numb. I was a little bit worried about the hand going numb because the numbness during the biopsy was really uncomfortable and caused me to get faint when they took me for a post-biopsy mammogram. On the other hand, the biopsy also included needles, which are notorious for causing me trouble with standing up.

this week I finally felt like I had the energy and ability to recycle some clay, including the forgotten bulb 

I was allowed to adjust my right hand and that fixed the problem. Once the pillow was adjusted to my body, it also added some support to my left arm and the breaks both came at just the right time to allow me to wiggle my numb arm.

I made several new bulbs, including this one with a new sprig mold

After the pillow got set up, my doctor came in. She was in for just a few moments, but managed to draw all over my chest with Sharpie (wouldn't you think they'd have a fancier marker for skin?). Some pictures of her attempts at body art were taken (which made me feel pretty strange--some stranger taking topless photos!) and then they sent me through the CT machine.

pugging new soft clay for building

The CT took a bit longer than it might have, because the guy had to check that my arm wasn't going to knock into the side, then he needed to drape some fabric up over my right elbow because it was dragging on the machine. Once the CT started it was fast. I did one CT or one set of CTs (I don't remember), then we did the breath-hold CT. 

a new port-a-cath bulb

Breath-hold is the technique that will keep my heart (and lungs?) safe. The idea is that I take a deep breath and that pushes my cancer-y breast tissue away from my one and only heart so that the radiation is as far away as possible. I was surprised that there wasn't a more complicated technique. She asked if I'd been practicing (uh, no? was I supposed to?), but I think she was joking. The guy just had me take a deep breath and hold it. He sent me through the CT machine about 4 times with my breath held, but I think the first two were practice because the machine seemed quiet.

a new texture bulb (because I wasn't ready for port-a-cath bulbs yet)

I asked the doctor about the technique I read about in Dr. Susan Love's Breast Book where some women lie on their stomachs for radiation to protect the heart. My doctor said that would make it hard for them to get to all the lymph nodes they need to treat, and she also suggested it's more for women with larger chests than mine.

another new port-a-cath bulb (I have a new sprig, made with my own port-a-cath, in the kiln, ready to fire)

The last thing was to get tattooed. I was apprehensive about this because prolonged arm up position, discomfort, new experiences and needles haven't been a great combination this year. (Witness: biopsy and needle locator before my first surgery). The tattoos are each a single dot. He wiped my skin clean where the Sharpie Xs were, then dabbed on some ink, then poked me with a needle. On the left it hurt more than the right, but everything hurts more on the left lately. They were less painful than a flu shot and a lot less painful than a growth factor shot (which goes in agonizingly slow) or an IV or a lidocaine shot (I've had a lot of these lately) or a needle locator (when the lidocaine didn't work), or a biopsy needle (which, admittedly was more scary than painful, because of the lidocaine, presumably).

the kiln, partly loaded, trying to have new stuff ready for the Labor Day art tour at my house

I told my family I was entering my rebellious phase a bit late, what with the tattoos and the topless photos. But as my husband pointed out, the tattoos are both smaller than nearby freckles and other natural marks on my skin.

a port-a-cath sculpture, partway through glazing the second layer

Waiting, again

The saddest thing, in my opinion, about the meeting is that I was told it would take 5-14 business days for the planning to be completed, which potentially pushes back my timeline yet again. Last time I talked to the doctor, I thought she said 3-7 days for planning, which is hopefully still the case. She needs to make a plan for the angles of the radiation to get the cancer-y targets but miss the heart and lungs as much as possible. Then she needs to run a simulation of the radiation plan to check that her angles work. Of course, she might then need to adjust and rerun the simulation.

the port-a-cath from the above sculpture

Since I had the CT on Friday the 15, it sounds like Friday the 22 is the earliest the plan could be done. The technician wasn't sure if they could immediately start radiation treatment or if they'd need to do a practice with me in place first. If I start on the 25, I'll be done with radiation in the middle of the week before convocation (when faculty come back to work in the fall). If the planning takes the full 14 business days, it looks like I'll be finishing radiation during the first week of classes. 

the wiped glaze from the above sculpture

Big Sigh. I have been playing with a calendar since December, comparing the estimated treatment and recovery times, and I was so sure I'd be done before work started in the fall. There's still a chance, but the fact that it's not guaranteed (and the fact that I'm waiting AGAIN, and waiting just sucks), is just disappointing, depressing, and suck. 

a port-a-cath sculpture earlier in the process

Cancer is stupid

Having cancer, and doing stupid treatments for cancer, for me, has been a roller coaster of times where I feel like: I can do it! I'm doing my best and things are going great! Look at me, I'm strong and I have a good team. How lucky am I? I'm going to be fine. This isn't so bad.

And then I get to the nadir of the ride and I just feel mad and sad and "why do I have to do this?" Why couldn't we have caught this earlier? Why do I have to do more stupid chemo than other people? Why do I have to do another surgery? Why do I have to do 6.5 weeks of chemo when other people do 3 weeks. And some people only have to do 5 treatments. Ugh. I've written myself through the lows a few times on this blog. They don't last, but the waiting time is hard and the unknowing time makes the waiting even more annoying. 

Darter looks sad because I blocked her access to drinking the glaze water

I had convinced myself for months and months that I'd be totally done before the quarter starts and now I'm having a reaction against accepting that might not be true. I've also done that thing I shouldn't do between treatments (but I also have to do): I tried to get myself prepared for what I'd need to know and do during radiation. I know I need to exercise and use lots of lotion. I know bras might too uncomfortable to wear. But in gathering this information, I also seem to have gathered the information that the pain increases as the treatment goes on, 6.5 weeks is a lot, and the pain is actually worse after the treatment ends. Some people don't have too much pain with the treatment, but its possible that pale people (me), are in more pain. 

Sean (who is right), says that I shouldn't worry about it now, and that the doctors can help with the pain later if I need them to, but right now, with nothing else I'm allowed to do to make this any better right now, I just want to hit stuff and complain. Luckilly, I start PT next week and I've been told with PT starting I can ease back into (mood modulating) exercise. I CAN'T WAIT!

OT & Reading about Breast Cancer Again

 cw: cancer

Waiting on Radiation & Occupational Therapy Begins

It has now been over 5 weeks since my last surgery (and 8 weeks since the first). The waiting time in between action on the breast cancer is so tedious. In the first 3 weeks, I wasn't supposed to lift my arm above 45 degrees, so that the plastic surgery stuff connecting my lymph channels and veins could heal well. Last week I started Occupational Therapy (OT) at the Lymphedema clinic in Yakima. 

chart of the lymphatic system in the lymphedema clinic

The goal of OT is to help me learn how to prevent myself from getting lymphedema, since I'm more at risk of getting it after the ALND surgery. I don't have it now, though the OT doctor seemed to suggest that maybe I have 0 level lymphedema, which means no swelling. I don't see how that's different from not having it. Though I like my Occupational Therapist, I'm not sure we are 100% sympatico in our communications. Several times in our first appointment she asked me to move my arm a certain way, then laughed at me when I had no idea what she was asking for.

Sean is painting the dining room, so he laid down a tarp (flat) and the cats have been frantically attacking the phantoms underneath it

The first appointment appeared to be mostly to take measurements of my arms and back, to test how much I could move the arm, check the scar(s), and teach me some basics about lymphedema and prevention. The instructions from plastic surgery were to avoid lifting above 45 degrees in the first 3 weeks, but they didn't give me much guidance about what to do after 3 weeks. I've been doing the arm exercises, but only one of the 10 had me move the arm above 45--and that was only to 90 degrees.

The first day they were too terrified to walk through the room, but this morning their hunting instincts were cranked up

The upshot was that I hadn't tried to get my arm all the way above my head until I was at the lymphedema clinic (under supervision was my thought--I didn't want to ruin the work of the plastic surgeon). I can't start radiation until I can get it comfortably above my head for the CT, so the second goal of OT has been to achieve that position. 

"I am a fierce tiger"

With that in mind, I had a second OT appointment they day after the first (added at last minute to try to speed up my access to radiation). The second appointement was very different. She pulled on my shoulder and stretched my arm in all sorts of ways, put pressure on my scar and generally made the arm feel better and worse simultaneously. Then we went into the gym (the clinic has its own gym for OT/PT) and she had me do a bunch of exercises like climbing the "finger ladder" (which is an actual wooden ladder-like thing on the wall), and lifting and rolling a variety of balls and sticks to move my arm. 

(see how fierce?)

My homework was just to do these three sets of exercises twice a day. I've been doing them (and a bit more in the form of housework), but I still feel like I've got a ways to go. My OT said that I'd probably be ready for radiation prep this week, but I'm not so sure. As of today, I do not think I can get the arm fully overhead unless there's going to be more propping up than I anticipate. I do have another OT appointment tomorrow, so I hope she'll help me understand. 

the battle is ready to begin

Other than the OT, I've been doing a whole lot of nothing during the past 5-8 weeks. I know my body has been healing, but I'm pretty impatient and not being "supposed" to do stuff around the house has gotten old. It was kind of nice that, when Sean moved furniture out of the dining room (he's starting to repaint it), I wasn't asked to help, but I'm also not able to spend much time in the studio without getting a pretty serious backache. 

I started glazing a bit after my first surgery, but it wore me out. Coming back to it (in small doses) weeks later means I can't remember how many layers I'd already done, or what the color plan was going to be!

Reading About Breast Cancer, Again

Because I can't do much physically, and because I am not actively in treatment (or hadn't been until OT started last week), I finally got back to reading about breast cancer. I had set aside the reading early on during chemo because it was stressing me out. I was getting scared and worried about treatment and the unknowns of the whole experience.

Dr. Susan Love's Breast Book, 6th Edition (2015)

Some friends had loaned me Dr. Susan Love's Breast Book and I had read a bit, but had to stop. I always wanted to get back to it, but I felt I had to wait until I was mentally ready. So over the past weeks I read almost the whole thing. 

can you feel the tension?

I read nearly every page of the first 505 pages of the book, but came to a screeching halt at the last section "Recurrence of Breast Cancer." I closed the book for a few days while I decided whether I was mentally ready to think about cancer coming back. I decided that I could proceed with caution and skimmed a bit of the first chapter (chapter 19), but decided not to read on. Hopefully I will never have to think about this stuff, and at this point I think knowing just enough to monitor my health appropriately "is indicated" for my situation. As my husband accidentally pointed out last night, I'm not even done with the first round!

the battle commences

Writing as a way of processing information

I read this book a lot differently than one might read a general interest book, as you can see by the many tabs in my (borrowed) copy. And, as I've been doing all along, I process this information by writing about it. So, I guess what follows is a (long and personally skewed) book review that is intertwined with my own experiences of the thing that caught my attention in the book. I'm sharing it publicly for three reasons: 

• Someone in a similar situation might find this information useful
• I sometimes look back at posts to know what I was thinking/doing at the time
• My family/friends might be interested

But if you are just following along for updates about how I'm doing, that stuff mostly ended in the first section, so feel free to stop now (or just look at the cat pictures ;-). On the other hand, I 

Dr. Susan Love's Breast Book, 6th Edition (2015)

First, this book is sometimes referred to as the "bible" of breast cancer, so you know it's pretty reliable. It's also super thick (690 pages, including the notes and index) and chock a block with information about breast health, cancer development, treatment, and more. It's also the 6th edition, and the author writes about things that have changed since the first or the fifth edition and things she's added based on feedback on the earlier editions. 

fight!

But, it is also fairly old by now (and my understanding is the author does not plan to revise it). I read somewhere, earlier in this process, that you shouldn't rely on any book published more than 7 years ago. I did notice a few places where the standards have clearly changed over that time (I think I point out a few instances below), but I do wonder how much of the rest of this is now out of date. I don't have an answer, but is probalby good to keep in mind when reading the book or my discussion/review.

just two lumps with tails

Additionally, one more caveat: I have read a lot about breast cancer over the past 8 months, so things that strike me are (probably) mostly things I haven't already internalized or things that I haven't already discussed here. If I do repeat myself, it's probably because I haven't fully processed the information (or because my chemo brain made me forget ;-).

Screening

The first thing that caught my attention was these two graphs on page 154 of the Screening chapter (chapter 7). They both start with a group of 200 women who do or do not get cancer screenings. This is for women age 50-70 and the screening happens every 3 years. For those of us over 40 and under 50, there often has appeared to be a gap in statistics or information, not just in Love's book. In fact, screening guidelines still vary for this population (i.e. me last year!).

chart comparing the results of screening over 3 years (page 154)

In the first, of those 200 women who were not screened, 12 are diagnosed and treated and 4 die. In the second, of those 200 screened, 15 are diagnosed and treated, 3 die, and 3 are over-treated. So the trade-off is that those who were screened see one fewer death, but also 3 people are overtreated. My husband asked if those who are overtreated might die from their treatments, but it doesn't say. What frustrates me about this comparison is that it includes only one type of pain and trauma as a "negative."  In this comparison, the pain and trauma of folks who are over-treated (meaning folks who go through surgery, radiation, and/or chemotherapy for a cancer that never would have progressed to a dangerous level) is acknowledged, but not the pain and trauma of folks for whom the disease was caught late and had to go through more treatment that they would have if the disease had been caught earlier with mammography screening. 

reconsidering their positions

Of course this means me and that's why I'm frustrated. Because I did not start mammograms at 40 and/or because I did not get a mammogram in July when I first reported symptoms to my doctor (albeit vague and difficult to articulate symptyoms), my cancer was caught after I felt a lump in September at age 41. By then it was invasive, agressive, fairly large, and had lymph node involvement (cancer had spread to the lymph nodes). From feeling the lump to being diagnosed took about a month and a half. Treatment began 2.5 months after I felt the lump. With the same timeline, if I'd had a mammograph in July, I might have been diagnosed in September, and started treatment in October. 

retreat and reset

Would I have still needed chemo, surgery, and radiation? Quite possibly, but my second surgery to take lymph nodes out was a close call. The plastic surgery to repair the lymph drainage system only happened because of the second lymph node surgery. So if I'd started mammograms at 40, or if I'd been referred to have a mammogram in July, I likely would not have needed the second set of two surgeries (or the extra recovery time) and I might not have needed OT. I know (from experiencing it) that the surgery recovery would have been less painful. I likely would have started radiation by now. If my lymph nodes weren't involved, I radiation would be of a shorter duration (though I don't know if my lymph nodes were involved already in July).

what were we doing?

This has been my frustration all along with books and resources that say that mammograms are not recommended for folks between 40-45 or 40-50. They only seem to look at the overtreatment as a problem or at the stress of people whose have biopsies that come back negative (arguably unecessary biopsies). On the other side, they only count deaths and they don't account for the extent of treatment for earlier or later cancers!

the battle ends with the attention spans

Love cites a "recent analysis" (recent to 2015) on page 155 that found that women between 40 and 50 have "more agressive cancers that are less amenable to screening", meaning that the trade-offs between screening and deaths "averted" are less impressive than the number of deaths averted in the over 50 age range. So maybe this is part of the answer, but it still seems like there's either a gap in the research or in how the results are communicated to women under 50. I will admit that my lack of medical and research knowledge means that I may also be misunderstanding or simply missing something, but I have tried to find it.

My suggestion for a useful clincial study

Later in the book, Dr. Love says that patients can start their own studies (page 288, chapter 11). I love the idea of encouraging doctors to study what matters to me: how much treatment is requred for 40-50 year olds who don't get mammograms, but do find their own cancers versus 40-50 year olds whose cancers are found via mammogram. Do the former have more surgery, more chemo, more radiation, and more recovery time than the latter? Does the type of chemo, surgery or radiation change? Don't just count up who dies; count up the treatments and the intensity of the treatments!

According to Love, in 2015, our "...our government does have guidelines suggesting that every woman over forty be screened" (page 162). This must have changed since 2015, and I think that currently some places suggest 40 and over (SCCA, Mayo Clinic, etc) and others suggest over 45 or over 50. Love suggests that screenings over 40 be "viewed with some skepticism" (and I disagree) because of the reasons mentioned above.

Breast self exams & exams performed by a doctor

Another interesting bit of research has to do with breast self exams. Most women, at least most women my age have probably encountered the breast self exam card in a dorm shower or doctor's office at some point. Apparently these have fallen out of favor (or should have) sometime since I was last in a dorm shower. 

The shower card showed how to systematically check for one's own breast for lumps. Love discusses a study where they were taught women how to do the breast self exams well, but the results suggested that those breast self-exams are not a good option. "The breast cancers detected in the instruction group were not diagnosed at a signiicantly earlier stage or smaller size than those in the control group." (Love, page 160).  Both groups found cancer, but the systematic breast self exam group also found more stuff that wasn't cancer. 

In the control group of this study, and in general, most women found their own cancer just by accident (and because they know what their body should feel like). This was the case with me, though I'm annoyed, as you've probably noticed, that noticing the non-lump changes (itching, discomfort, sensitivity) wasn't enought to get me a referal for a mamogram back in July. Finding the lump by accident in September did get the mammogram train moving.

What is also kind of amazing is that no one (at least according to this book published 7 years ago) has studied whether physical exams done by doctors are useful in detecting cancer! Lots of studies on mammograms, but not on tha doctor doing a preliminary exampm. Also, doctors aren't trained to do these exams anyway! (Love, page 161) 

Coordinated care

Something that surprised me in the book is the way Dr. Love suggests that women may need to coordiante their own team of doctors and care for their cancer. She suggests that the surgeon, oncologist, radiation oncologist, and plastic surgeon might not be in communication with each other. This surprised me, as both the medical providers at SCCA (Seattle Cancer Care Alliance) and in Yakima have operated as well-coordinated teams. The Monday after my biopsy, I was called in to O'hana in Yakima to learn the bad news (the "you have cancer" conversation that must suck for everyone and that made me temporarily hate the poor woman who delivered it), be given a thick manual all about breast cancer, and to discuss the next steps.

Aside: At the time I thought that must be the worst job, informing people about their cancer diagnosis, and assumed that that woman met with people all day or every day to have the same conversation over and over again. I've since done the math (well, I've estimated based on very rough educated guesses) and I figure that conversation probably happens more like once a week or a couple times a month, maybe less. It still sucks, but I'm really glad that it isn't happening multiple times every day.

After telling me I have cancer, showing me a model of what size the cancer was, and talking to me about what sorts of things would be scheduled for me right away and who would be in touch, the kind (and not at all hateful woman) explained that on Friday of that same week, a team of doctors would be meeting to discuss my tumor and my treatment plan. Later, when I connected with SCCA, they also had a similar meeting that involved my surgeon, an oncologist, a radiation oncologist, and a pathologist. In Yakima, when I first met with my surgeon, he already knew my history and had already consulted with the team about what would happen first (chemo) and what the plan was for my whole treatment. This kind of coordination made the whole process much easier, and I can't imagine the added stress of somehow trying to manage that coordination as a patient.

preparing the dining room for new paint

The other incredible thing about coordination happened between my two surgeries. I was scheduled for a post-op checkup at SCCA one afternoon in late May. The week before, my surgeon had called to tell me that because of the indeterminate results of my sentinel lymph nodes, she would be asking the tumor board (surgeons, radiology, oncology, and pathology) to advise on whether the second lymph node surgery was recommended. But not only was the whole team meeting again to discuss my situation, since I was coming to Seattle for the checkup, it was a good time for a plastic surgery consult for the Lympha procedure. So SCCA put in a rush referral and I got an appointment with plastic surgery at UW for the same day, early in the morning. Not only did that stuff happen fast, but while I was at the plastic surgery consult, SCCA called me (and when I didn't answer because I was talking to the doctor, they called Sean) to say that I could come straight to SCCA after I was done at UW. When we did that, they got us in quickly, hours and hours before our scheduled post-op. And, the post-op with a nurse had magically turned into a pre-op with the surgeon, too.

fun new hiding spots in the dining room

I don't know about medical procedures in other parts of the state or country, but in Yakima, that kind of coordination can't even be expected for a routine checkup with a single primary care provider. My husband and I have both sat in waiting rooms for 45 minutes to an hour (after arriving on time), waiting for our primary care doctor to see us, only to sit for an additional 30 minutes in an empty exam room. (And if you are tempted to suggest we switch doctors, know that I can easily count 4 different providers/clinics where this has happened.)

the cats needed a dinner escort to help them eat after we moved their food dishes out of the dining room

I don't know if the tumor boards and coordinated meetings of providers are new since 2015, regional (though I know my nephew has had a similar experience), or a lucky coincidence for me, but I'm glad that this section of the book bore little resemblance to my experience.

The new dining table location, near the lego city means a new diner table conversation topic (and a cat hiding spot)

Tumor Margins

I was surprised to read about how clear margins are actually determined, according to Dr. Love. When they took out my tumor (and my nephew's), I was under the impression that they sliced the whole thing up and checked for cancer cells all the way around the surface of the mass they removed. According to this book, They take a slice (or several) out of the lump and check the margins of the slice, but they don't check the entire tumor. This means that when they find clear margins, the haven't checked absolutely everything. It also means that they might accept a few isolated tumor cells at the margin, as long as the main mass of the tumor wasn't at or across that edge. 

Cali, asleep on the lego sorting job

This makes sense, once you think about it, but wasn't what I imagined. However, it does help me understand why they need to do more radiation in that area. In my case there will be both radiation to the whole breast and lymph node area as well as a "boost" of radiation at the hole (my phrasing not theirs) where they cut out the tumor. With this definition of "clear margins" instead of an absolutely certaintly that no cancer cells could possibly be in that area, radiation makes sense (or in doctor speak: "is indicated").

Order of Treatment

The book was generally a little disorienting to read for two reasons. First, though the author acknowledges that chemo may be the first step in treatment, the assumption often seems to be that chemo comes last. As a result, with my chemo coming first and surgery second, I sometimes find myself a little lost. Do my lymph nodes count as having no cancer (now) or do they count as being "involved" (as they were originally) because I am partway through treatment?

Similarily, was my tumor 2.3 cm (roughtly the size it was on biopsy), 4.5cm (the side it was in an MRI three days after chemo had started) or 1.2 cm (the size it was after chemo when it was removed)? Ultimately, it probably doesn't matter, but I don't know how to orient myself with statements like 

"Also the mere presense of cancer cells in a lymph nodes is no cause for alarm. Lymph nodes that contain single isolated tumor cells or small clumps of tumors cells, so called micrometastates, may not signify any worse behavior than if they are completely negative" (Love, 216).

Because my chemo came first, this statement doesn't apply to the status of my tumors after surgery. My surgeon and the tumor board determined that the isolated tumor cells in my lymph nodes were cause for concern because they were still there after chemo, which is why I had the second lymph node surgery. It's not a big deal, but it is disorienting for someone who did things out of the "standard" order, even though the author acknowledges, earlier, that either chemo first or chemo later could be the standard order.

Cali, being attacked during lego sorting

I was also bothered by the way that the author would sometimes put in personal anecdotes or itnerpretations that didn't seem to match the studies she had just cited. I appreciated both her inclusion of the studies and her discussion of the studies' shortcomings, but she'd sometimes toss off something that just didn't seem to fit, either her interpretation or an anecdote that didn't match the study results.

Buddy being snuggly upstairs

In the section on chemotherapy, they mentioned that Adriamycin, one of the chemos I had, can cause heart problems for "...about one in two hundreed treated women." But then goes on to say that "One of my former patients developed heart disease...and ended up with a heart transplant."  It's rare, based on the statistic, but then it's terrifying based on the anecdote!

asking for head scratches

I also found that the discussions of the relatively agressiveness of tumors with different markers was confusing, since I think it means had a more agressive form of a less agressive tumor. Tumors can be judged by size, how fast they appear to be growing (which, at the outset is judged based on how the cells from the biopsy look, not by waiting to see how much the tumor grows), and based on whether the tumor reacts to hormonse (ER+) or HER-2 overexpression. On the first test, my tumor was inconclusive for HER-2, but the second test showed that it was HER-2 negative. However, Love says that "Almost all DCIS is HER-2/neu positive..." (page 219). Which makes me wonder if my DCIS, which was identified and removed during my lumpectomy, means that overall I was both HER2- and HER2+. 

Alison is teaching him to jump up for head scratches

My tumor was ER+ and HER2- and it also had a Nottingham grade of 9/9 (high grade), meaning it looked like it would grow fast. My doctors did not do this special test to determine the Ki-67 protein level, because my ongologist said they already knew it looked like a fast growing cancer. I can't tell if the Ki-67 is something that was done in 2015 and isn't done now or if it's use is a local or situational decision. I believe this means that my cancer was Luminal B, but I'm not entirely sure if I ever got a clear identification of whether my "recurrence score" was high or low. Discussions in online breast cancer groups seem to indicate that lots of people get an oncotype test, but I didn't. I believe the oncotype test tells the recurrence score, but I'm not entirely sure what that means or why I didn't get it. Or maybe I get it later.

Aside: Many sources and individuals refer to "early stage" cancer, but I'm never quite sure if I qualify or not, before or after chemo. Similarly, individual well-wishers tend to say "I'm so glad they caught it early" despite having no idea if they did, indeed catch it early. 

 

As far as I understood from my doctors, The ER+ was good news, because they could fight the cancer with hormones. The HER2- meant that they couldn't fight it with Herceptin, and the indicators that it was fast growing were, of course, not great news. This book suggestes that most tumors are Luminal A and most of the hormone risk factors (including use of birth control, late pregnancy, and hormone replacement therapy) are predictors of this kind (page 221). As the only risk factor I can identify for myself is birth control (and my doctor bluntly said that my birth control didn't cause this cancer), and I think I have Luminal B, I'm right back to (what my doctors said at the start) no clear risk factors or cause.

training

However, some things do seem to match my experience. On page 224, Love says, of ER+ tumors "...the ones with a higher reurrrence score had both a higher rate of recurrence and a better response to chemotherapy, suggesting that the biology of the tumor is more important at predicting prognosis and the best treatement than the stage of the cancer." My tumor did have a good response to chemo, which unfortunately makes me think that means the risk of recurrence is high, too.

In the Recurrence section of Chapter 17, Love indicates that ER+ cancers (like mine) "have their [peak rate of recurrence] at four years" (page 465). This means I'm tempted to put a celebration date for, say, September 2026 or 2027 in my calendar. I don't yet have my radiation dates scheduled, but I'm still thinking (hoping) that I'll be done by the end of August or September this year. Which, incredibly, means that I will have been "dealing with" this darn thing for basically a full year from when I first felt the lump. Today, as I write this, I am essentially one year out from when I started noticing symptoms. Sigh.

Testing & Scans

Love says that imaging isn't useful for finding bits of cancer that may have spread to other parts of the body, "So we don't do those tests now unless we have a reason to think the cancer is likely to have spread because it is large or agressive or because you have worrisome symptoms such as a cough or weight loss" (page 233). She goes on to say "The exception to this is when we are going to give chemotherapy first and surgery second and you have symptoms..." This seems to contradict my experience, as I didn't have symptoms. I did have scans done before my chemo began. I believe the size of my cancer wasn't understood to be "large" even though it was larger in December than it was in May. To add to my confusion, a few pages later, on page 235, she says that medium size tumors with lymph node involvement will get bone scans and CTs (like I did). 

watch that foot

The book also suggests that I shouldn't have gotten an MRI ahead of time unless I had extrememly dense breasts, was being considered for a different type of radiation (XRT), or if I needed a breast reduction (page 247), but I did have an MRI. The book says an MRI means a risk of finding more suspicious stuff that might lead to the recommendation for a mastectomy, but my doctors wanted an MRI to more accurately identify the size and location of the lump for later lumpectomy. My reaction is that the tumor was a lot larger when I got the MRI than when I got the earlier scans and biopsy, so I'm frankly glad to know that the chemo reduced the size from 4.5 cm to 1.2 cm, rather than from 2.3 down just about 1 cm.

Radiation

Reading the section on Radiation was helpful because I haven't started that yet and there were a couple of questions I now have for my doctor. However, mostly the doctor had already explained the important parts. There are some really terrifying options for radiation with a balloon in the breast or these horrifying looking rods inside the breast that can have radioactive things inside them. I skimmed these sections, horrified by the diagrams, and happy that I didn't have to understand them fully.

and those claws!

The funny (to me) addendum to this was the phone call I got for scheduling Physical Therapy. My Occupational Therapist referred me to a Physical Therapist at the same place to help me ease back into exercise during radiation (she seems to think that without a PT guiding me, I'll overdo it). When the PT scheduler called, I mentioned that my schedule for radiation was as of yet undertermined, at which point she said the Physical Therapist she was scheduling for was pregnant, so I couldn't meet with her if I was doing radiation. There was a long pause, at which point I remember FAQs for radiation telling me that I wouldn't be radioactive. I told the scheduler this, but she wouldn't take my word for it and wanted to wait to consult with the PT person.

My mom asked a good question the other day: Why does radiation kill cancer but doesn't damage the lymph nodes. The book didn't explicitly address this, but it seems to be that radiation kills all cells, but the lumph node cells are able to grow back because they're supposed to be there or because they are fundamentally healthy. I suppose there are more node cells in a lymph node than cancer cells, so many that's it.

and back to cuddle

Surgery, ALND, Reverse Axillary Lymphatic Mapping

In the surgery section, chapter 13, the author describes an alternate treatement (reverse axillary lymphatic mapping) for reducing the risk of lymphedema with an Axial Lymph Node Dissection (ALND). The arm is injected with blue dye that highlights the lymph nodes that drain lymphatic fluid from the arm so the doctor can avoid removing those. The idea is that avoiding those lymph nodes would prevent lymphedema in the arm and presumably the breast wouldn't be draining cancer cells to those lymph nodes anyway (page 345-6).

My surgeon mentioned something about dye and massage of the arm before surgery but didn't explain because I opted for the Lympha plastic surgery instead. My arm was blue when I woke up, so maybe they did this, but I'm not sure.  

this guy used to be feral, but he is so friendly now

Apparently the lymph node biopsy and dissection can both result in pain, numbness, or tenderness in the area even five years later (page 348). This looks like a question for the lymphadema clinic folks, but I didn't ask because there was a lot going on. I'm signed up for something like 7 more visits, so I've probably got time. It did sound like the numbness, at least, might last quite a while. In the last two weeks, the pain has gone from a daily annoyance to an occassional twinge, mostly due to activity (or, perhaps more accurately, due to too much activity).

Hair Loss & Premature Menopause

I was a litte surprised to read that "...in most women the eyelashed and eyebrows only thin a bit" (page 435), since I lost my eyelashes entirely and it was super weird! All the hair is coming back now, though at slightly different rates. My eye lashes are fully back, but I don't remember the tips being blond/white. My head hair is really short, and more white than it was last time we met, but I'm happy that the front is filling out. 

check out that hairline on the top!

According to Love, "60 percent of those over forty will become menopausal [after 4 cycles of AC chemotherapy]" (page 424). It sounds like it may or may not be permanent. The two biggest symptoms I've noticed, are that the skin on my face cleared up (is that the fault of chemo or menopause or both?) and that I have hot flashes. The hot flashes appear to happen randomly, though Love advises me to "avoid triggers" like "spicy foods, caffeine, stressful situations, and hot drinks..." (page 491) to which I say: reading that suggestion was a "stressful situation."  I can't tell what triggers the hot flashes, since they seem to occur regularly when I'm sitting calmly on the couch in the evening and when I go to bed, but also randomly during the day. Since reading this, I've tried to gauge whether food/drink might be related, but I can't identify the link (they don't happen close enough in time).

twins

In another of her frustrating anecdotes, Love explains that after her cancer treatment (unknown treatment for a different type of cancer) she only had hot flashes for 10.5 weeks and then her period came back and she was done with the temporary menopause. I found this pretty annoying, since her situation has basically no bearing on mine or on breast cancer patients generally. It's another anecdote that doesn't really illuminate the experience of breast cancer treatment.

Conclusion 

It seems like I should have a conclusion, after all this writing. The book is good, but out of date. It's hard to tell which bits are, in fact out of date, so in all cases where my doctors' advice directly contradicts the book, I figure I can trust my doctors to know the latest and best information. And, of course, I've already followed most of their advice, etc before reading this book.

I did, however, find the depth of the explanations on a number of topics to be helpful and because it's a big 'ol book, the author was able to give more depth and more explanation than my doctors could. 

I think the simplest take-away is that it is unfortunate that there wasn't a more recent edition that I could have read, but I'm glad I was able to read this one.