I'm Still a Puzzle

I had an appointment with a radiation oncologist yesterday. She basically said that she doesn't know what to do in my case and also that her inclination is to treat me more aggressively. The bottom line is that, in my case, the risks and benefits appear to be roughly the same and that is because we ultimately do not know whether or not they got all the cancer when I had the mastectomy in November. If they did get all the cancer, then radiation would probably do me more harm than good, especially since the right side tissue and chest wall have already received the maximum dose of radiation.

If they didn't get all the cancer, there is a chance that that cancer will spread to other parts of my body and since I can't take Herceptin (due to heart problems, see my post "I'm a 'Medical Puzzle' from a couple of weeks ago) to fight the cancer systematically (i.e., throughout my body), she feels that the benefits (getting rid of the cancer) outweigh the risks (more damage to my lung, which already has some damage from the previous radiation; even less elasticity to that right side or other skin problems; problems with the implant; etc.).

I have more or less decided against the radiation. Part of my reason for doing so is that for the past two weeks, there has been a bit of a rash under the right tissue expander. It's kinda red and splotchy, a bit warm (although it's warm on the left side, too) and there's some wrinkling of the skin. My first thought, of course, is that it could be inflammatory breast cancer, although some of the symptoms include swelling (which my less elastic breast tissue can't do) and an inverted nipple (which I no longer have). It could also be a skin infection post-surgery or maybe even a fungal infection or just the skin reacting to the tissue expander or radiated tissue reacting to being expanded. We just didn't know. At any rate, luckily my oncologist, Dr. Kenyon, is now in the same building as the radiation oncologist because both of them looked at the red, splotchy area. Although they really don't know what it is, they took a skin biopsy to rule out inflammatory breast cancer. I should know in the next day or two what it is and how to treat it.

In the meantime, I've been playing volleyball for the past couple of weeks and I must say that it's been good for me because it's causing me to stretch my chest more than I would otherwise. I will see my acupuncturist for the third time today. She started me on a five-mushroom blend last week - I take it in pill form - and at least three of them have anti-cancer properties. I have also had some stomach upset, mostly in the morning, and it seems to have happened when I take my vitamins and calcium in the morning on an empty stomach. I decided to look at how much iron I was taking - turns out that I was taking about 250% of the RDA of iron everyday, between my multi-vitamin and an iron pill! I may have been giving myself "iron overload" and that may have given me some stomach upset. I'd been taking iron because I am anemic - I've always been slightly anemic. And, when I looked at my lab results from last week, I am still slightly anemic - my red blood cell count was 3.80 and normal is 3.9-5.1 x10 6/uL. My hematocrit was 34 and normal is 36-46%. My hemoglobin, however, was normal. On the other hand,my platelets were slightly elevated - 438 and normal is 130-400 x10 3/uL. A high platelet count could cause more bruising and Dr. Havard said that Ibuprofen could cause me to bruise more easily, so maybe since I've been taking Ibuprofen pretty regularly for awhile, it's causing my platelets to be high? Anyway, things to look into for my overall health and maybe something to talk about with my acupuncturist this morning.

Hope you all have a good day!

The Anthropology of Boobs

Hi everyone!
Below is an excerpt of an email I sent to my colleagues earlier today. It has to do with asking them for what they know about how breasts are viewed cross-culturally, so that I can contrast other cultures with how American/western culture views boobs. Boob jokes can shed some light on understanding their place in our culture. Anyway, here's the email I sent:

"As you know, I collected boob jokes prior to my surgery. I thought about writing it up somehow and then Joan encouraged me to write an article about boob jokes. I considered talking about it at my Tan Sack [lecture] next week, but have decided to talk about King Island placename density instead, partly because I really need to keep making progress on that project, but also because I realize that I need to do some more research.

At this point, just based on the jokes I collected, there are three general categories of jokes: 1) jokes about what I'm calling the tragedy of sagging boobs as women get older [which is the view of larger American society]; 2) jokes about breast size; and 3) jokes that try to turn the table on men (e.g., the Manogram designed by women to check men for prostate cancer!). This all speaks to how our society thinks about breasts - the emphasis on youth culture, breasts as the object of sexual desire, and women making fun of men.

But this morning, I got to thinking that the article might be better if I talk about how breasts are viewed cross-culturally: is there the same emphasis on breast size? Breasts aging? etc. So, any information that you can share with me regarding breasts, sex or sexual desire, or whatever, would be interesting.

I had coffee with Andrew Valls [the friend who sugggested I write this blog] earlier this morning and he had a lot of ideas about how to look into this further - one idea was to look at breast humor from different disciplinary perspectives such as philosophy, political science, sociology, etc. Another idea was to look at how breasts are viewed through time in our society (e.g., he thought looking at New Yorker cartoons for the past XX years would be a good place to start).

My original thought was that I could write a more academic article on boob jokes for a folklore journal. And, I thought about asking the Susan B. Komen Foundation to fund a little booklet of boob jokes that can be given to breast cancer patients and survivors. Another idea would be to do an edited volume that either looks at breasts cross-culturally or
cross-disciplinarily. That might be getting too ambitious, but I figured I'd talk to Mary Braun and see what she says. At any rate, any information you can share with me, I would appreciate it!
Thank you"

In response, one colleague (who shall remain nameless unless he wants recognition) also suggested that I look at Playboy magazine historically to see how boob imagery changed through time - he mentioned that Playboy used to employ some good cartoonists). He also mentioned that in the early 20th century through the 1960s or 1970s, physical anthropologists were interested in classifying race through body morphology [which is now completely discredited] and that there was actually a male professor at the University of Oregon who took casts of women's breasts throughout the world. Apparently, UO used to display such "busts of busts" in their faculty conference room, which were removed when more female professors were hired. So, that gives me another couple of avenues for research.

If you have any other ideas, please let me know! Andrew thought it was a good idea to look at this academically so that I could "make lemonade out of lemons". Thanks, everyone!
Dee

A Day to Myself!

Today was a beautiful sunny, if chilly, day! And other than an appointment to have Zoladex injected into my abdomen (in order to chemically induce menopause), it was free. My son was with his father for the day, so I had the whole day to myself to do what I wanted when I wanted!! It was very nice. I slept in a little, cleaned the house a little, worked a little, shopped a little, now I'm relaxing on the couch watching CSI. I needed it - I took Eddie and his cousins to OMSI yesterday and by the time I got home, I was certainly over-stimulated, so having some peace and quiet is just what the doctor ordered.

Zoladex is, apparently, a little pellet that is placed subcutaneously just below your belt line. Over the period of a few weeks, the medicine is released and absorbed into my system and, if all goes according to plan, I should never have a period again. I'll take Zolodex for about 2-3 months and then I will have my ovaries removed. I'm tempted to celebrate! We'll see how I'll do with menopausal systems, though, before celebrating too much!

In the meantime, I'm waiting to hear from Dr. Kenyon about what to do about my heart. I also have a week off from tissue expansion - Dr. Havard is away, but I'll start in again next Monday. No other news to report, so I hope that you all were able to enjoy the sun!

I'm a "Medical Puzzle" OR Both Good and Bad News

Hi everyone,
A few minutes ago, I got off the phone with my oncologist (Dr. Kenyon). I had a MUGA scan yesterday and he called me with the results. My "ejection refraction" (a measure of the percentage of total volume in your left ventricle that is ejected with each heart beat) was 41. Normal is 50 or higher. This means that I have some heart damage and therefore Herceptin is NOT recommended. Dr. Kenyon called me a "medical puzzle", meaning that because of my history and current condition, he's not quite sure how to advise me in terms of my treatment path. So, I am relieved because I won't have to do Herceptin (and endure another injection - yesterday for the MUGA scan, the techs stuck a needle in my three different times and couldn't get the vein! They had to call in an IV nurse - and now I have four needle marks with some bruising!). But the news was colored by the fact that I may have permanent heart damage.

Now, my heart damage may be due to the adriamycin, one of the chemo drugs I had five years ago, in which case, the damage may be permanent. Or, since I had the flu last week and may still be dealing with the after effects of the flu, it might be temporary damage due to a viral infection. In any case, Kenyon will consult with a cardiologist and ask this doctor how they want to approach the problem. I may, therefore, have to do more cardiac tests. Or, they may recommend waiting a couple of months, redo the MUGA scan and see if the damage is viral/temporary or adriamycin/permanent. So, now I wait to hear what they want to do in terms of my heart. Kenyon asked if there was any history of heart damage in my family and other than my dad having high cholesterol, my grandmother with high blood pressure, and my maternal uncle had heart bypass surgery, there isn't any. In other words, there isn't a strong family history. And, I've been able to live a more or less normal life activity-wise. I used to be a runner, but my knees have forced me to walk now; I play softball, volleyball, and tennis. I'm pretty active - I walk up steps, etc. So, there was no indication that I might have heart damage.

I had more or less decided that my treatment path included Herceptin and inducing menopause and go on aromatase inhibitors. Now, Herceptin isn't an option (although if the heart damage is temporary, then we'll go ahead with it). We're continuing with inducing menopause and I will have my first shot to chemically induce it on Monday. We'll do that for a couple of months until I have the surgery for the permanent implants and will have my ovaries removed at the same time.

Also, awhile back, Dr. Kenyon consulted with Dr. Livingston in Tucson and with the local tumor board. Their recommendation was to consider radiation to that area and the fact that I'm having implants is good because it's less likely that the radiation will hit the bones. So, I also have a consult with the radiation oncologists coming up.

Kenyon also mentioned that Livingston suggested a bone scan since a PET scan doesn't always pick up on bone cancer, so I may also have a bone scan in my future.

Livingston also suggested chemo as did Kenyon, but I'm refusing it since I still believe pretty strongly that it hasn't spread elsewhere and with this latest news that adriamycin may have caused permanent damage . . . I just don't want to chance other kinds of permanent damage with any of those other chemo regimens.

So, there you have it folks. I can't take Herceptin; I could take chemo but I have decided against it; I may have radiation; and I am going into menopause and may take aromatase inhibitors. The good news is that at least for now, I don't have to take Herceptin and the bad news is that I may have permanent heart damage.

I saw a local acupuncturist today and I liked her quite a bit. I'll work with her over the next few months and see if there are other ways to address my medical issues.

Everyone, have a happy Friday! I don't have any appointments tomorrow, which means that I can actually work 5 or 6 hours on work! I plan to work on one presentation/article and redo my "to do" list so I know how to prioritize my time in the next few weeks. Yippee! Take care, everyone.

Pity Party's Over - I Hope!

Hi all,
Just wanted you to know that I'm feeling better today, although when I woke up this morning, I wasn't so sure. I still have the sore throat, but it seems to be better. (I said that before, though, so I'm not holding my breath!)

I had an expansion appointment this morning and so far, I don't feel as sore as I did last week. Progress is always good! I told my doctor today that the left side was feeling softer, more like a water bed! He he.

He also released me to go back to normal activities (which I more or less was doing, although cautiously) and, furthermore, he felt that playing volleyball was fine as long as I didn't go all out. Yay! Since my surgery, it seems that my team has forfeited more games than they've played for lack of players. I've been trying to recruit more players as I've lost five since last year - haven't been as successful as I'd hoped, so I'm glad I'll be able to play again - in fact, my first time on the court since surgery is tonight. We'll see how I do!

I also forgot to mention that I also have a MUGA scan scheduled for Wednesday - so I have an appointment scheduled for each day this week.

Workwise, this week, I'm hoping to 1) work on an article related to placename density on King Island; 2) begin throwing together a proposal or two to get more funding for the King Island project; and 3) work on a bibliography related to the Alaska Native Claims Settlement Act. We'll see how much I actually get accomplished!

Happy Monday,
Dee

Back to reality

Hi all,
Yep, I'm feeling a bit down in the dumps this week-end. First, I'm still recovering from the flu bug although it turned into a nasty, yucky sore throat! I haven't had a sore throat where it hurt to eat or talk in years! It's been quite frustrating as I'm hungry but I'm afraid to eat. (The worst thing about my breast cancer treatments five years ago was the chemo, when I was hungry and knew I needed to eat, but didn't want to eat for fear of throwing it all back up - an experience I hope I never have again.)

My sore throat affected my week-end: my partner, Scott, drove down for the week-end for the two of us to celebrate the anniversary of our first date and I was either tired or feeling frustrated and down over the sore throat. Sigh! It just got me to thinking that I have been either ill or recovering from surgery since late October. I caught a cold in Alaska in October and still had a cough when I went in for surgery (three weeks) and the cough didn't completely go away for another three weeks. Then, there was recovering from surgery and feeling sore around my chest. I think that I had about a week or two when I felt fairly chipper - not too sore, able to sleep on my sides, no cough, sleeping well - but that was right before the flu.

So, yeah, I'm having a pity party.

In addition, it's back to reality this week as I have a lot of appointments related to my breast cancer: Monday is another tissue expansion day (my left side is no longer as hard as a rock - at least parts of that side feeling like a squishy balloon!); Tuesday, I meet with my counselor; on Thursday, I have my first appointment with a woman named Brodie Welch, who practices traditional Chinese medicine (not sure what my treatment might be, but it will hopefully get me through Herceptin treatments); and Friday, I was supposed to have my first Herceptin appointment. However, I plan to talk to Dr. Kenyon tomorrow, especially if my sore throat is the same as it is today. (I went to Immediate Care again on Friday when the sore throat was particularly bad and the doctor informed me (again) that it was not strep and that I should expect to have the sore throat for at least another week.) I really don't want to start Herceptin when I'm not feeling as healthy as I can be - if I still have a sore throat, my immune system is compromised which means that I may have a bad time with Herceptin. Don't want to do that - I want to experience Herceptin much like Jeanne Sather did for six years - Jeanne has her own blog called "The Assertive Cancer Patient" and she states that she didn't have any side effects. I'll talk to Kenyon and see what he says.

I've also thought this week that I do seem to get sick more often and colds/coughs tend to hang around for a very long time (6-8 weeks, typically). Why? My guess is that I'm dealing with long-term affects of chemo - I remember Kenyon's nurse telling me last year that patients who have had chemo have weakened immune systems, generally, and it's harder for them to fight off these infections. My naturopath said something similar - that my body was asaulted by some very powerful drugs and it's still trying to cleanse itself of them. Or something like that. These were all reasons why I opted out of chemo this time around.

Well, let's hope Monday is not a typical Monday - I'm hoping myself for a normal throat, with a spring in my step from a good night's sleep. Happy Monday to you all,
Dee

Damn flu!

So, Monday, after I picked up Eddie from school, I got the chills that didn't go away for about 30 minutes - by the time I got home, my fingers were tingly and numb and I was shivering uncontrollably! After making tea and trying to warm my hands above the burner, I checked my temperature - it was 100.8! All day, I'd felt fine and I didn't start going downhill until about 4:30pm. It was weird how quickly the symptoms came on. I also had achey muscles, headache, sore throat and an earache. Sigh!

Since then, I've been managing the fever and I woke up yesterday with the glands in my throat swollen, making it hard to swallow. It's still that way although I think the throat is less swollen today, but it still hurts. The aches have gone away, although I still have a slight earache and the sore throat. I had the sore throat checked for strep yesterday evening and it was negative, so it is the "damn flu!".

I caught it from Scott, who came down with flu symptoms two weeks ago today. When I finally spent some time with him, he hadn't had active flu symptoms for several days, so I thought it was safe. I guess not! I'm hoping that I'm over this flu for a few days before starting Herceptin. If not, I might have to delay it for another few days.

Anyway, have a good Wednesday!
Dee

Goodbye Christmas Tree and Next Steps

Hi all,
I spent all yesterday evening taking down the ornaments from my Christmas tree and putting away all of the rest of the Christmas decorations. It's kinda sad, but now the surfaces and walls have a cleaner, leaner look. It's fun to have all of that stuff out but it does create more clutter. (Or maybe that means I need to reduce the other clutter that's around!) But that also meant that the closet I keep all that stuff in needed to be reorganized. For some reason, post-Christmas becomes the time to straighten out that closet. The rest of the year, I grab stuff out of there and then throw it back in, with no regard to how it's organized. So, I also cleaned and reorganized that closet. But now I look around the house and realize that there's a couple of other spaces that have kinda suffered from neglect post-surgery - one room has all my breast cancer books and stuff on a table. My work file piles (I have about 5 or 6 piles of file folders and books related to different articles or research that I want to work on) have all gotten disorganized and I need to file away receipts and statements and then put all the new Christmas card pictures onto my bulletin board - I post pictures with kids on them. I also moved furniture around in my bedroom last spring, but never got around to rearranging the pictures on my walls; these pictures are all now off-kilter and not centered so I want to fix that. House work is never ending, huh?

I talked to my oncologist a few days ago and then with the Ambulatory Infusion department. I have my baseline MUGA scan on the heart on Jan 16 and then I start Herceptin on the 18th. We are assuming that the MUGA scan will be normal but because Adriamycin can cause heart damage, we're just making sure. This also gives us what my heart normally looks like so that hopefully, we can detect any damage that Herceptin can potentially cause down the road. I'm waiting for Ambulatory Infusion to get the orders from Dr. Kenyon on chemically inducing menopause for a few months, so that's not scheduled yet. In the meantime, I meet with Linda Gelbrecht at Heartspring Wellness Center on Monday in order to start working on meditation and other visualization techniques. In particular, I want to do visualization about the Herceptin and begin thinking of it as a cleansing substance so I don't approach these injections with anxiety or fear. I want to do this to hopefully reduce any side effects I might have. I'm also meeting with Brodie Welch on Jan 17 - Brodie practices traditional Chinese medicine and I think I read that she specializes in women's medical issues. This might mean that I get acupuncture, too, or maybe take some Chinese medicinal herbs to help me through the treatments.

My son starts school on Monday and I have my next "pump up" session on Monday morning. A woman at the support group a few weeks ago called her tissue expanders "breasts of steel" because the tissue and the expanders were so taut and hard. I know what she meant! I've got these little boobs growing now, but they are kinda hard to the touch! I think that means that even as they get bigger, I may still not need a bra because they won't be saggy! Also, my little lumps are lopsided - the left side is definitely bigger than the right and that's because of the prior radiation to the right side which has decreased that tissue's elasticity. My plastic surgeon said not to worry - in the end, he'll make sure everything matches. So, don't be surprised if you see me if one side seems bigger because it is!

Take care, everyone, and have a good week-end!
Dee

Onions and Christmas Trees

Hi everyone,
Here's another picture from the "boob food" contest. Amazingly, it looks almost exactly like the entry that won first prize, but unfortunately, they've fallen or sagged. The boob cake was made by Amy Searles, who was ill and couldn't come to the party, but her husband, Josh, brought it. Apparently, he said, it was too warm in the car because all the icing and the other "toppings" melted and slipped, which for us older women is generally the sad state affairs for your breasts - saggy boobs! And, to commemorate the poor things, here's a joke that my cousin, Theresa Muktoyuk, sent right before my surgery. The joke seems to fit the photo!

ONIONS AND CHRISTMAS TREES

A family is at the dinner table.The son asks his father, "Dad, how many kinds of boobs are there? The father, surprised, answers, "Well, son, there are three kinds of breasts.
In her 20s, a woman's breasts are like melons, round and firm. In her
30s to 40s, they are like pears, still nice but hanging a bit. After
50, they are like onions".
"Onions?"
"Yes, you see them and they make you cry."
This infuriated his wife and daughter so the daughter said, "Mum, how many kinds of 'willies' are there?"
The mother, surprised, smiles and answers, "Well dear, a man goes through three phases.
In his 20s, his willy is like an oak tree, mighty and hard. In his 30s and 40s, it is like a birch, flexible but reliable. After his 50s, it is like a Christmas tree".
"A Christmas tree?"
"Yes - dead from the root up and the balls are just for decoration!"

HA!

I got a good laugh out of that one!

In the meantime, no new news on the treatment front, other than I seem to be healing nicely. I am actually 1) sleeping on my side now! 2) able to lift my arms above my head so that I can put on pullover shirts and turtlenecks, the latter is especially nice since it's been around freezing here in the Willamette Valley; 3) able to reach for things; and 4) hug my son (and my boyfriend) and allow my son's head to rest on my shoulder while I have my arm around him. I hadn't let my son do that when things still felt tender and because of the numbness around my chest area. I have this six-inch band of numbness that starts from about 3-4 inches below my neck to just under where my old breasts used to be, and this band extends from underneath one arm all the way around to the other arm, except for a bit of sensation right around my breast bone in the center of my chest. It's strange - I can feel pressure deeper in that area, but no sensation at all on the skin. I was a bit leery at first because I wasn't sure I could tell whether or not my son would be applying too much pressure or not (and thereby causing an injury I wouldn't be aware of because I can't feel), but I think I've figured out. Or maybe because I have nearly normal range of movement, I feel that I'm just about healed so now feel that I can hug without worrying. Boy! The issues one worries about that you never think you'd have to think about!

Next week, I will have an appointment with Dr. Kenyon and then prior to starting Herceptin, I want to have my heart function evaluated . . . so it doesn't look like I will start until mid-January. I guess he and I will also talk about chemically inducing menopause for a few months as I think I will try to have my ovaries removed when I have the permanent implants inserted. This way, I have both procedures at the same time and thereby limit my time in surgery. My plastic surgeon was okay with that scenario, so now I just need to check with my ob/gyn.

In the meantime, I want to do a couple of things around the house and tomorrow, I will be meeting with Scott's friend, Greg Hyatt, to talk about web designing; Greg wants to help develop interactive, educational web sites about endangered animals and the environment and with my interest in climate change issues in the north, it seems a good fit. I already have some information that I'd like to put into an interactive web site for the King Island community, so we'll see. It'll be fun to sit around a brainstorm for a bit tomorrow!

Take care all and Happy 2008!
Dee