There was no lump -- a Breast Cancer blog

NED 2008

2008-05-20T20:35:00.000-04:00

Still disease free!
Check out my new year's update at
http://liane2008.blogspot.com/

Best of 2005

2006-03-16T17:34:00.000-05:00

May 14 -- Rose, Laura, and Liane start the Avon Walk.

Laura finishes 26 miles.

"I have learned over the years that when one's mind is made up, this diminishes fear; knowing what must be done does away with fear." Rosa Parks (1913-2005)

Happy and Healthy 2006!

2006-01-30T00:21:00.000-05:00

Dear Friends,
By way of a "group" holiday letter, I thought I would add to this blog. After my struggle with cancer in 2004 there are so many people who I want to keep in touch with, and to make sure that everyone knows how much I appreciate their support and encouragement. Blogging about "my cancer adventure" was a way to keep people up to date when I was in treatment, but I haven't kept it up for some months now. So, "Happy New Year!" -- well -- the Chinese New Year starts on Jan. 29!

2005 was -- most importantly -- a year of good health and high energy. I had my last radiation treatment on Jan. 3, 2005 and have been "officially" cancer-free ever since. I continue to see my cancer "team" of Doctors, one every three months. In May I had my mammogram (Special! Half price!) and also an MRI, since the tissue of my remaining breast is very dense. Everything came back fine. Then in Nov. I had a bone scan, which I requested since I'd been experiencing some back pain. Again, everything was fine, so I guess that was just plain old "normal" back pain like everyone else seems to have. So I am still NED (no evidence of disease). Yay!
I did have a little encounter with lymphedema in March; I saw a physical therapist to learn how to deal with that: if I remember to wear my special compression sleeve and glove when I fly, I don't seem to get any flare-ups. The whole lymphatic system seems so important yet mysterious, certainly not something I had ever thought of before.
I got used to wearing my prosthesis and now I don't really give it a thought. My hair was growing back in the spring, and in the summer I gave most of my hats and both my wigs to the Breast Cancer center at my hospital.

A real highlight of the year was participating in the Avon fundraising walk for Breast Cancer, May 14-15. I was very privileged to walk with my close friends Laura Macy and Rose Theresa as a team, "Musicologists for a Cure" (the web-site is still here ) We raised nearly $9,000 through the support of many friends, colleagues, acquaintances and total strangers; money that will be used in cancer research and to provide treatment and support for women in need. I was very impressed by the organization and imagination that goes into making the walk exciting, fun and memorable. I walked 26 miles in two days, Laura did the full 39 miles, and Rose had some knee problems on the second day, but did over 20 miles. It was a remarkable and moving event in so many ways: getting to know Boston by foot - we walked everywhere! Camping out in huge a tent-city that was erected that day for us; showering in special shower trailers (really nice ones!). And the ceremonies and rituals that bring the community together, and remind you of the importance of the cause -- one was the "every three minutes" ribbon: every member of the organizing crew had a big pink ribbon -- like a sash -- that they would randomly put over the head of some walker during the course of the weekend -- or leave it outside her tent at night -- as a reminder of the sudden and unexpected way that breast cancer strikes.

The Rebecca Clarke Society reprinted A Rebecca Clarke Reader in paperback in June 2005. The book is now in more than 75 libraries in 10 countries. My 2005 lectures about the book included the Peabody Conservatory, Royal Musical Association of the U.K. and a conference hosted by New York University. I was taped in two interviews for cable TV (both airing in 2006). I am very happy to be busy promoting the Reader -- the work my treatment kept me from in 2004 -- and working on my next book (a biography of Clarke).
I enjoyed a great many trips in 2005 (after staying home and in treatment in 2004): including Puerto Rico, New Mexico (my mom and I saw some spectacular operas in Santa Fe), Oxford (UK), then in December, California for the Holidays, followed by Guatemala, for the New Year! Rosie and I celebrated our second anniversary and had such a wonderful trip to Guatemala. I am looking forward to traveling to Cuba -- (CUBA!!) A group from Brandeis is going and I just thought -- what the hell! I'll start a new research project interviewing Cuban women composers, and I'm sure it will be fabulous.
GREAT THINGS!: My niece Marli -- age 15 -- attended a summer school at Yale. I'm very proud of her thirst for knowledge and her spirit of adventure. My nephew Tom (age 13) is becoming a really skilled musician on both the guitar and piano.
One thing I got done (by tasking my roommate Rose T to be the "foreman" -- I was out of town for most of the construction) was to have my back yard landscaped with a retaining wall. The large, interlocking bricks (two tons of them!) were moved from a nearby construction site -- I called the owner, and they would have gone in the dumpster otherwise. So I think I should get some kind of prize for ingenious, large scale recycling, and Rose T. could get an honorary contractor's license for overseeing the crew of "Craig's List" workers.

There was sadness: Pamela, my beautiful tabby girl, was quite sick in late March when the Pope was on his last legs. Would she outlive the Pope, I wondered? She was on an I.V. for three days, and (at the same time as the Terry Schiavo debacle was going on) I wondered if I unhooked her from life support would I get protesters in front of my house? But she pulled out of it and outlived the Pope -- I made her her own little Pope's miter and suggested that she should be nominated to be the next Pope. Of course they don't let females be Pope. Then she was fine until Dec. when she weakened again, and died peacefully on Dec. 17 -- she was 17 years old. We'd been through a lot together. Bertie, her stepbrother, just keeps going. He was quite sick after Pam died (I wrote his obituary as well as Pam's) but he came around. (I will add Pam's obituary here)

And speaking of the Chinese New Year, on Jan. 29, the year of the DOG begins -- and Rose T, my roommate has just brought a beautiful 4-year old greyhound into our home! Her name is Lily, she is lovely and so far Bertie is taking it pretty calmly!

Wishing you good health, happiness and productivity! And Peace!

We Walked the Walk! Some pictures from the May 14-15 Avon Walk

2005-05-17T00:04:00.000-04:00

Here I am at the 10 mile point on Sunday! Only three more miles to go!

2005-05-17T00:03:00.000-04:00

We camped out in this tent city in Malden

2005-05-17T00:00:00.000-04:00

Laura at the halfway point (mile 13) on Saturday (for me and Rose it was the finishing point! Laura went on to do all 26 miles that day)

2005-05-16T23:58:00.000-04:00

Liane, Laura, Rose

2005-05-16T23:50:00.000-04:00

"Musicologists for a Cure" team honored in a roadside sign -- We find this at about mile 11 on Saturday

2005-05-16T23:47:00.000-04:00

Early Saturday morning.

2005-05-16T23:44:00.000-04:00

Starting the Avon Walk: Rose T., Laura, Liane

Rosie's Letter

2005-04-28T21:14:00.000-04:00

If you look at my Avon Walk page, you'll see that I was able to reach my initial fundraising goal in only two weeks. And important part of that success was Rosie, my amazing girlfriend, sending out this fundraising letter to her e-mail address book. You'll need your hankies for this one!

Rosie's Letter :

By the time my late partner Dana died on January 29, 2000, she had been through an unimaginably horrible series of treatments known among cancer patients as "slash, poison, and burn": a mastectomy, followed by several courses of chemotherapy, and finally radiation to control the tumors that eventually attacked her brain. From August 1996 until she died, we witnessed her uncomplaining courage as she fought the disease.

Five years later, I had the good fortune to fall in love with another wonderful woman, Liane Curtis. Seven months after we first started seeing each other, she was diagnosed with Inflammatory Breast Cancer (IBC), a rare and particularly virulent form of the disease which five years ago was still a death sentence. As you can imagine, I was deeply shocked, dismayed, and overwhelmed by her diagnosis. How could it be? In my mind's eye, all the images I had vanquished of Dana's suffering came back to me. I was overcome with the memories of the pain, the hurdles and the obstacles that Dana dealt with and my heart felt paralyzed with fear.

Liane's first treatment was every bit as bad as I remembered Dana's to be. It was as if my heart fainted to see it. Unlike Dana's experience, however, Liane's doctors immediately adjusted the medication and she proceeded through a very radical course of chemotherapy (needed for IBC) to the mastectomy, and finally to a course of six weeks of daily radiation. Aside from a loss of weight and some tiredness, Liane was able to weather the treatment fairly well. Today, she has been declared as having "No Evidence of Disease." In five years time, advances in the treatment of the disease made it possible for the doctors to make those adjustments.

In the weeks since her treatment ended, she attended a friend from her support group, Regina, who was diagnosed at the same time that Liane was but who died of IBC at the beginning of March. She is determined to continue to fight cancer even though she no longer has it (and of course, we pray that she will never again be afflicted by it.) Towards that end, she has signed up to do the Avon Walk for Cancer, a 39-mile marathon to be completed over two days in May. While I cannot personally walk with her because of my arthritis, I am writing to you in the hope that you will sponsor her walk.

Better than anyone, I can tell you that your contribution WILL make a difference. Liane's experience of the treatment, while no picnic, and her prognosis are both much better than they would have been five years ago: I witnessed the difference on a day to day basis. Statisticians say that one out of every eight women will get breast cancer. It is imperative that we treat breast cancer as an epidemic and work together to attack it from every side. Every contribution, no matter how small, is needed to combat this curse.

Rosie's story is an amazing one. And if you are so moved, we hope to get more Avon contributions for my teammate Rose Theresa, you can give on her page here.

Not just talking the talk ...

2005-03-06T17:21:00.000-05:00

Cancer sucks! Let's fight it! I'll be walking the Avon Walk to help fund research to find a cure, and to make treatment available to all women. See MY AVON WALK PAGE to donate. THANK YOU!

Does anyone NOT want to see my scar?

2005-02-05T23:49:00.000-05:00

[Whoops -- I drafted this a month ago -- Feb. 5 -- but am just now putting it up today]
It's hard for me to understand that you might not want to, but just in case, I'm not putting the picture up on this blog, instead I'm putting it here. I guess for me the scar is a symbol -- of conquering disease. YIPPEE!! I am likely to whip "Stumpy" out any time, any place. Because people need to know that we can get through this -- and be happy! Minus one breast, but zany as ever. And how about all that fabulous HAIR?
So I'm back to "normal" -- I am leaving "Planet Cancer" and I am "Dancing with NED" -- I've been declared "no evidence of disease." It's as close as I can get to being "cured" -- I know there's a fear of remission, and I'll be seeing a doctor every three months in perpetuity. But it's great to be free, free from the demands and side effects of treatment, great to feel strong and energetic (I can't believe how long I've gone without so much as a cold! -- knock on wood!)
And am I leaving this blog behind, as a relic of "Planet Cancer"? The lack of recent posts suggest that, but -- I and a few friends have decided to do the Avon walk, May 14-15. Walk 39 miles in two days? Seems crazy -- but also an act of faith. Faith, not in any conventional religious sense, but just faith in my treatment, faith in all the wishes, hopes, prayers, help, and "healing vibes" provided by my friends and family. I really belive these have been central to my conquering the disease. Faith in human will and the power of hope, faith in love and celebration -- all these feelings offered by those around me. Also my faith in science, research, faith in drugs to do what doctors say they will do. After all, I never suffered from the disease itself, just from the treatment -- but I had to have faith that the treatment would prove effective, and would keep the disease's ravages from being unleased.

Greetings from Puerto Rico

2005-01-07T19:17:00.000-05:00

Well, I finished treatment on Jan. 3, and on Jan. 5 Rosie and I took off for Puerto Rico. So far we have just been in Old San Juan, which is beautiful. It's been raining some, but it's very warm and so nice to see tropical flowers and to play with the parrots that live at our hotel.
My skin is still burned and tender, so I haven't been wearing my prosthesis yet, but being here really makes me think I should be wearing it. First, it's being out of all the layers of clothes that we need in New England, and wearing just a tee-shirt or even a sleeveless shirt. Next, it's just that it is quite a breast-conscious culture -- Puerto Rican women wear a lot of low cut tops and tube tops, or spaghetti straps, not just young women but more mature ones too. I even saw a woman holding her cell phone in her cleavage! Not that I'm trying to fit in, but just not standout too dramatically! But the people are very nice and friendly, and no one is staring or anything.
And -- the hair thing! I can really go without a hat. It's short, but it looks like a short cut. It is so exciting! I'm writing from a Ben and Jerry's, where they have public internet access. I probably won't write again untilI get back. This is vacation, Rosie and I didn't bring our laptops!

Fit as a Fiddle

2004-12-27T11:21:00.000-05:00

OK, I certainly am full of energy. Today (Dec. 26) I went to a yoga class, and then tonight (at 10:30) I got out my cross-country skis (giving up on shoveling, after two bouts) and skied around my neighborhood in the new fallen snow! It was beautiful and great to be out before the snow got trampled by plows and people.
I'm excited to be nearing the end of my treatment -- only five more radiations. I do have a blister-like burn on my armpit, but it really isn’t bad. Also a little pinkness and tenderness to the scar area. I'm feeling very lucky that I've had so few side effects from the radiation.
So it's looking like "My Cancer Adventure" is going to end happily -- I'll have to see my oncologist again, but I feel confident the prognosis will be good. Of course, I will be living with cancer -- with regular tests and fear of reoccurrence, so the happy ending is a little bit open-ended. I'm taking Tamoxifen, so I will be getting that hormonal therapy for the next five years. But I am also looking forward to returning to "normal life" and letting my identity as a cancer patient slip out of the foreground.
Rosie and I have decided to travel to Puerto Rico in early January, so I'm having fun planning that.

Fry me to the Moon ...

2004-12-23T13:18:00.000-05:00

As of today, I am finished with all the full treatments (28), and only have the five "boosts" (treatment of the scar area) left. Yeah! I have a very pink square on my chest, including half my armpit -- it looks pretty fried. I got some prescription cream, "Radiodermitis emulsion" that feels very cooling. Anyway, I think I am lucky not to have any blistering or "wet desquamation." And no fatigue or any other side effects.

A friend from my support group was in the hospital for a second time, because of infection to her "pik line." The hospital is not a fun place to be for so long. I borrowed a laptop with a DVD player and took a movie in so we could watch it together -- Danny Kaye's "The Court Jester" -- very fun! She was just getting out today, I'm very happy she won't have to be there over Christmas.

I got fitted with my prosthesis, although it is going to be a while before I'll be wearing it much -- I'm getting cooked to medium rare with radiation, so it will take a while to heal from that. It does look like "the real thing" (not quite as saggy as my remaining "real thing") and feels a lot like it too, in weight. Was a little bit chilly, though -- maybe I can microwave it?? And at last I've learned the difference between "Silicone" and "Silicon."

My Job: Hold Very Still

2004-12-14T13:16:00.000-05:00

Dec. 14th -- radiation treatment number 21
It isn't always easy -- the other day I had an itch on my face and I was twisting and contorting it trying to ease the itchiness, I must have looked like "Mr. Bean". I completely wasn't thinking that the RT's are always watching me through a camera when they are not in the room with me -- what a show for them!
Today I had a yoga class; my teacher had breast cancer and went through radiation last summer. She knew all the RTs and staff and told me to say hello to everyone there. It's a small world -- and breast cancer is one of those threads that can connect women.

2005 -- and the end of treatment
My last treatment is scheduled for Jan. 3, 2005. I had hoped that I would be able to finish treatment in 2004, and my support group said it was silly to have just one treatment scheduled in 2005, and that they ought to be able to double up -- give me two doses on one day. So I asked Dr. Brown about this. Her answer was not what I had expected. The last five treatments are called "boosts," they are just to the scar area. She said, (I paraphrase here) "Oh, we'll just give you one treatment less -- it won't matter. Because your cancer is inflammatory, what we are really concerned about is the chest wall, and not the scar. Five boosts is just an arbitrary number, we don't really know that five are better than four, we just know that five shouldn't hurt you."
Now this certainly made sense and was very reasonable, and also is one of the common features of treatments -- that there are a lot of unknowns and thus there can be a lot of variables. But it also made me uneasy that I would be missing a treatment. And if I did have a recurrence, later down the road, I know I would say to myself, "Oh no, I shouldn't have talked Dr. Brown out of giving me that last treatment." In short the unease I felt at having one less treatment outweighs the relief I would feel at being done on Dec. 30. So I think I'll go back to having my last treatment on Jan. 3 -- it's not like I'm going anywhere.

The Joy of Eyebrows

2004-12-08T17:26:00.000-05:00

THEY'RE BACK! And more beautiful than ever. I had wanted to get a close-up picture of my sad-looking "deforested" eyebrows, the few brave hairs that managed to survive. Too late now – they are better than ever, because they all grew back at the same time and thus are exactly the same length. They have a smoothness and regularity that they didn't before.
My beautiful eyebrows. I just stand there in front of the mirror -- raising both (looking alarmed), raising one (looking quizzical), pushing them together in a scowl. Not having eyebrows had really taken away so much of the expressiveness of my face, and just left some very bleak features. The eyelashes are back, too, I saw them first sprouting as a row of tiny dots around my eyes.
And my head hair is growing back, too. It is wonderfully fuzzy (Dr. Brown was stroking my soft fuzz the other day). It is now long enough so that it is lying down flat on my head, and so that some hairs seem extra long, and I can even have messy looking "hat hair" (solved by keeping my hat on – I do still need hats for warmth). The big difference here is the color –the brown is lighter, sort of faded looking. And there is plenty of gray – maybe it's half-gray now, as opposed to the one tiny cluster I previously had over my forehead. That grayness is a testimony to the strain the treatments have been to my body. Also there are some more wrinkles. But all in all, I feel great and am so happy to be feeling so great, and to be getting my hair back!
Yes, I'm still in treatment, but now I once again share the feature of hair with the human race, and with mammals of the animal kingdom.
Inquiring minds have asked about my pubic hair comb-over. Those inquiring minds can satisfy their curiosity by joining my health club.

The Toaster

2004-12-07T13:20:00.000-05:00

I was thinking (in my treatment) about how the radiation machine needs an affectionate nickname. (I still think it needs to be decorated with stickers and artwork, but I guess that's not going to happen). Of course, thinking about that computer in the film "2001," anthropomorphizing powerful machines can have sinister overtones. How omniscient this one is, is not clear to me. My five Radiation Technologists are like high priests tending it, with their ritualized vocabulary of actions and words (I was looking up "gantry" and "bolus" the other day). Gosh, I guess that makes me some sort of ritual sacrifice, being placed on the altar – every day. That's not a very positive metaphor. Let's try something else, like the machine as some sort of spa apparatus, the RTs as the masseuses and spa attendants, and me as the recipient of the machine's healing rays and the RTs healing touch (and healing Sharpie marker lines). That's better – it is after all a healing ritual – maybe it needs to incorporate some Navajo elements? It really does need to be aesthetically improved.
Anyway, The Toaster was the nickname I came up with – affectionate, yet sarcastic. Before my treatment started I had imagined that my treatments might be like going to a tanning booth – soothingly warm, and filled with a brilliant sunny light. But of course that's not the case, the radiation I'm getting is invisible. But I am seeing the effects, as my skin is getting red in the quadrant they are zapping. Exactly one half of my right armpit is being treated -- that half remains bald while the hair is flourishing on the other half.

aa-OO-gah! aa-OO-gah!

2004-12-03T23:08:00.000-05:00

We have such a great time in my support group. I was about to go for my prosthesis fitting, and I mentioned all the great things about having a "falsie." I could get the practical money-belt/coin-purse model, for instance, or the one, that when you squeeze it, goes "aa-OO-gah!" General hilarity followed, and one woman said she really would like the "aa-OO-gah" boob. Since she had her bilateral mastectomy, she missed having the "bumpers" that protect her from people getting too close and "in your face" when they give you a hug, so the "aa-OO-gah" boob would serve as both buffer and protective alarm. If either of these ideas exist, I haven't seen them in the cancer products market -- maybe they are in joke stores.

Rosie's thought was that it isn't really socially acceptable to go around squeezing your boob (even a pretend boob), which is true, this is just an idea I had to share with my friends. But it is one of the ironies I've considered before. I remember once seeing a poster on the subway, reminding women to do a monthly self-breast exam. Now, there I am on the subway reading this, and of course it is also a time when people have a few spare minutes -- it could be a practical use of time. But although you see all kinds of acts of personal hygiene in the subway (including applying mascara and flossing of teeth), to engage in the potentially life-saving act of touching your own breast is something our culture frowns upon. It's all because of the breast as a site of sexual pleasure -- and thus a highly charged topic, one generally taboo in public. But if only we could better compartmentalize the different functions of the breast. After all, I saw a woman very comfortably breast-feeding her baby on a bus not too long ago. And I think everyone would agree that when you are thinking about breast cancer, the breast is not a site of sexual pleasure!

Changes -- the Hospital / future plans

2004-11-27T01:04:00.000-05:00

The Hospital -- It's funny how it feels kind of like home, how I can't go in there without seeing someone I know, usually right in the parking lot. My anesthesiologist, my social worker, other patients, my doctors, a whole range of nurses. How, even though it is confusing to get from one building to another, my feet now know the way without hesitation even when my brain does not.

It is some sort of turning point, that I am reading less about cancer and more about travel, namely, to Mexico. Several people have recommended taking a trip once I finish treatment. They say that patients often feel let down after the end of their treatment, with its daily routine, and all the attention from and contact with a big range of health professionals. So plan a vacation so that you have a wonderful celebration for the end of treatment, instead of a feeling of post-partum about your identity as a cancer patient. Rosie is Hispanic, and has relatives in Guatemala, so that and Mexico are possibilities. It is more fun to read about Mexico than about cancer!

But on the other hand ...

2004-11-22T23:31:00.000-05:00

Re. the What Do We Feel About Our Bodies? entry below (Nov. 17). Of course, it's not fair of me to be critical of those who choose reconstructive surgery. I realize this is a very individual decision, and in my case my feelings are colored by my no less than irrational fear of surgery. I still don't understand why I was so afraid of the operation. It wasn't fear of losing my breast, I know that, since I don't really mind having it gone (even though I am sometimes surprised to look down and see it gone). So I certainly wanted to keep my surgery to a minimum, meaning no reconstruction. And hearing about the painful recoveries of women who have chosen reconstruction, I know that for me, I have made the right decision.

My "Blanky"
Treatments continue to go smoothly. The skin of the treated area is perhaps feeling a little sensitive, but not much. I bought a very cheap little fleece blanket, to wear over my shoulders as I wait for treatment. I guess I'm a little phobic about being cold when I'm waiting (and during the treatment, but I guess my arm-warmers are all I can do about that). And it seems like a good place to bring a security blanket (or security anything). I still keep fanaticizing about ways to brighten up that machine - could I sneak some stickers on it?

A member of my support group (she also has IBC -- inflammatory breast cancer) - is in the hospital, I've been dropping by to visit her when I'm in for my treatments. We had been "neck and neck" in our care, since we were diagnosed at the same time. But ever since our surgeries, she's had some setbacks. That emphasizes to me how random cancer is. It's like that when you're first being diagnosed, but also within the illness -- one day you think you're on the right track and the next day you are off on an unexpected tangent on your pathway to recovery.

back to "Normal"??

2004-11-17T21:48:00.000-05:00

Wednesday is my "all-cancer" day. My Support Group meets in the morning. Then the Mind-Body Medicine class has been meeting Wednesday evenings. As I write I'm in between my radiation treatment and my last Mind-Body class. Although I have learned some very important things in this class (ten sessions), I will be glad to have my Wednesday evenings back. I am still reading books about cancer (or rather about dealing with cancer), but I am beginning to feel like devoting less time to being a cancer patient. I want to get back to “normal life” – not to the extent I was before, but I do want to pick up some important projects.

What Do We Feel About Our Bodies? My Humble Opinion
Today in my support group, someone observed "I never knew how many breast-less women there were out there until I got cancer myself." Once you start telling people about your own diagnosis, they come out of the wood-work. But I keep thinking they shouldn’t be “in the woodwork.” They should be “Out.” It's the artist/activist Matuschka who feels that hiding the fact that we have had surgery keeps cancer patients isolated from one another. I realized I had never seen another scar apart from my own -- which is amazing considering the health clubs that I've belonged to in the past. These women are hiding themselves. Knowing that there are so many women out there who have gone through this would lessen the shock of the initial diagnosis. It would make the disease less mysterious, less confusing. Also the feeling of the need to pursue an imposed perfection -- through reconstruction or prosthesis -- keeps women from being able to appreciate their own bodies, as they are, post-surgery. If one in seven women get breast cancer, having a scar should be normal, not something to be corrected. Well, my humble opinion.

2004-11-16T23:29:00.000-05:00

Me In October 2005 -- taken by Rosie

Treatment 2

2004-11-16T21:25:00.000-05:00

Still fine. The machine is really on only very briefly, three "blasts" (there is an electronic sound, not loud) of less than 15 seconds each. I'm rubbing in some special lotion someone in my support group gave me -- I am well prepared because of this wonderful group of women.
I am feeling clever about the "arm warmers" I invented, cutting off the legs of a pair of thick tights and using them to keep my arms warm while my torso is bare. Dr. Brown said she'd never seen anything like them before. Before my treatment, I went and visited two members of my support group who are in the hospital. One had a bilateral mastectomy, and the other is now in radiation like me, but still having problems from her surgery in October.

33 Short Entries about Radiation

2004-11-15T19:16:00.000-05:00

First Treatment -- Went very smoothly. I walked in and two Radiation Therapists treated me right away. These are people who are never going to see me fully dressed, I guess. The radiation itself seemed to be on for less than a minute, three times. One dose is from the back, and when I saw Dr. Brown, I asked her if the platform I'm on doesn't block some of the rays. She was emphatic that it doesn't, and that it takes eight inches of metal to block the rays. Then I grasped that the reason I am bare-chested for the treatment is not so cloth won't block the rays, but so the Therapists can see what they're doing. It's all in the tattooed dots, lining up the machine to them. The Doctor told me one set of dots are the "in" set, and the other shows where the rays go out. Anyway, the set-up is what takes time; I was done in 20 minutes. I ran into a colleague from my support group; she is still having problems from post-surgery swelling that make it difficult to "assume the position" for radiation. I guess I am lucky that everything is going smoothly for me. One down, 32 to go.

Slouching towards Radiation

2004-11-14T16:03:00.000-05:00

Friday was another prep session for my radiation treatments, that begin tomorrow (Monday, Nov. 15). Following my surgery, I felt so relieved, and optimistic that the radiation would be the easiest part of my treatment. Now after these prep sessions I'm feeling a little daunted. Huge machines, laser beams, more drawing on and measuring of my chest. It's all cutting-edge science, that's for sure -- I really feel like the energy and research that is going into making me well is no less involved than that of putting a man on the moon. I saw some of the diagrams that came from my last prep session, like a detailed topographical map of what's between my ribcage. They are actual physicists who do this, as well as the Radiation Therapists who I met, and who will be my "team" for the next six weeks.
I still am thinking that things could be done to make the treatment process less cold and intimidating. I was imagining the big machines covered in brightly colored fake fur -- now that would be warm and fuzzy!

Moving On --

2004-11-08T10:16:00.000-05:00

I’ve been feeling so good! Lots of energy. My eyebrows are growing back -- their full shape is defined by a dusting of stubble, and I was even thrilled to find a hair on my chin!! Wanting both to celebrate and encourage this zesty energy, I signed up for a health club. As I thought about doing this, one of the daunting things was thinking about showing my mastectomy scar in the locker room. I belonged to this club a few years ago, and I never saw anyone with a scar (it is a women-only club). I had to do searches of mastectomy scars on the internet, to try and get some notion of what mine would look like. So eventually I realized that if women haven’t seen such a scar, they should. If one in seven women get this disease, we shouldn’t be hiding!
Then the other thing that started to worry me was feeling self conscious about my lack of pubic hair. AS I looked in the mirror, I wondered if I had enough pubic hair to try a convincing comb-over. ;-) Just kidding, only a man would be silly enough to think a comb-over could be convincing! And now that I'm going to the club, I recall that locker room etiquette of course means that no one ever looks at anyone who has their clothes off ....

Radiation -- the next step

2004-11-03T19:51:00.000-05:00

"They marked me up like a side of beef," I laughingly told a friend about my radiation simulation, the measurements and preparations for my radiation treatments. Although all the Doctors and technicians were as nice as could be, nevertheless: having three or four white-jacketed scientists standing over me and talking about me, marking me up with Sharpie markers, drawing dotted lines and circles, laying pieces of wire on me (using them as a plumb line? I don't know), shining red light beams on me, tattooing a set of tiny dots onto my skin -- there's no way that all this can be done in a warm and fuzzy or even personal manner. As the staff talked over me, I tuned them out, closing my eyes and breathing deeply. There was some discomfort in all this, as I had to have my arms over my head as I lay on the platform, resting them in stirrups -- which started to feel like handcuffs (my right arm is still sore from surgery, remember). And of course I was naked from the waist up, and they always seem to have it extra cold in places where this occurs (to enhance that meat locker effect?) The platform I was on moved around as they took a series of x-rays that became a 360 degree view of my torso. At the end of this the technician draped a robe over my chest and snapped a Polaroid. Just like at Abu Ghraib, they wanted to have a little photographic memento. When I asked, I was told they just want to be able to match the x-rays with my face. So why not have me smile for the camera?

Next was another CT scan. I'm getting used to this one. I kept thinking they should get artists involved in the design of these big medical machines, to make it a more aesthetically pleasing experience. It wouldn’t impair the function at all. I imagined a CT machine designed by William Morris, and one designed by Peter Max. I guess I should write to GE, the manufacturer?

Links to Photos

2004-10-26T18:04:00.000-04:00

I've put some photos from the past few months on my other website:
June -- the headshaving (photos at the bottom of the page)
August "No-Hair Days" and some other more recent days, too.

Breast-fest -- the artwork

Mom

2004-10-24T23:46:00.000-04:00

My mom visited me for my surgery. She was concerned and wanted to be helpful. It was great to see her and have her here – she lives in California and hadn’t been out here to visit since 2000.

She helped drain my drains (of my incision) and also cooked, and busied herself with some major projects like re-organizing my pantry and back stairs. The pantry hadn’t been done since 2000 when she last visited!

Since I was energetic enough to be up and around just a few days after my operation, we went to a musical and an operetta – they were both fine productions (one of the reasons it is great to live in Boston). I do have this vivid memory of walking to the theatre on a blustery afternoon, with my mom urging me “Hold on to your wig! Better hold on! Look out!” Did she even reach out to hold my wig herself? It was in no danger at all; it had a very tight grip on my skull!

It was also the first time that we had spent my birthday together in many years. Friends came over for my birthday, and we had chocolate cake, yum, yum!

Back in June – at the same time I was diagnosed, my mom was diagnosed with a small, pre-cancerous calcification in her breast. She had this removed in a day surgery. So she was able to offer insights on anesthesia and her operation, and pre-and post-operation feelings that were helpful to me. So I benefited both from her assistance psychologically and more tangibly. THANKS MOM!

Onward and Upward!

2004-10-24T20:48:00.000-04:00

A New Team Member
Surgery – that’s old news. Now it’s on to radiation. And my radiation-oncologist, a new member of my care team, let’s call her Dr. Brown. I like her a lot; she has a a good sense of humor and a vivid way of describing things – saying that breast cancer with “lobular features” is like silly string, and that the lymphatic system is like the “shop vac” of the body.
She explained all my radiation treatments – and their long list of possible side effects. Topical burning of the skin, fatigue (as if from sunburn), and also the possible long range risks – that the radiation itself will trigger a new cancer, such as one in the lung that a bit of the rays will strike. Anyway, it’s all weighed carefully against the risks and possibilities of a reoccurring cancer.

Pathology report
Dr. Jones was telling me about the pathology report that came back analysing the tissue (my breast) removed in the surgery. Some good news – I am estrogen-receptor positive, which means that I can be treated with hormone therapy. So the more ways we have to try and treat my condition the better the chances of beating it. I am going to start on tamoxifen – I just emailed Dr. Smith and she emailed back in minutes, that I can start tomorrow.
Other info from the pathology report: there was cancer in the tissue, so I don't have to worry that I might have had a needless mastectomy. The tissue removed had clean margins – meaning, as tests determine, all or most of cancer has been removed. However four of the five lymph nodes removed were cancerous, meaning that some of the remaining lymph nodes are certainly cancerous. Say, that's their job as the "shop vac" of the body, to suck up all that icky stuff. We'll take care of them in radiation.

Getting acquainted with my new body

2004-10-23T20:45:00.000-04:00

As I said before, I’m relieved to have my surgery over with. And my feelings about my “new and improved” body are curiosity, interest, even wonder. New sensations, of my chest area itself (some numbness, some tenderness), and also of my hand as I run it over the new shapes – the very flat shapes (although I still have the drains in and I can feel one of the tubes running to the incision). In fact, rather than flat, it seems concave, flatter than flat, not just that the breast has been removed but even dug out!
And what do I call this, the space on my chest where my right breast was? The scar, the incision, the place of my mastectomy – but the skin is still there (not all of it, but the skin that is there has been carefully preserved, and the incision is very neat.). The nipple is gone, the shape is gone – the ducts and glands and lobes and tubes that were always there although I never thought about them much. How do I name what is left, the skin, the scar, the little bit of muscle over bones? Maybe there’s a word I don’t know yet, until then it seems like it’s the proverbial “presence of an absence” of literary theory.

Spring has Sprung!!

2004-10-20T20:37:00.000-04:00

It’s Fall outside, but there’s new growth on top of my head! I can’t believe how satisfying this is to me. Rebirth, regrowth, regeneration, new life, new hope. It’s soft, it’s fuzzy (not like the prickly stubble). Fecund, resplendent, lush (but not green). I take my hat off to show and to stroke; I wave a slow goodbye to a side-effect of chemo.

Mind and Body

2004-10-19T20:50:00.000-04:00

I am now about halfway through a course on mind-body medicine (offered by the hospital). It’s an introduction to a whole range of alternative therapies that can supplement conventional treatments. It is taught by a wonderful oncology nurse (who helped me with my chemo treatments), and she brings in expert guests.

There’s been a focus on learning relaxation techniques including meditation and visualization. The goal of these techniques is to treat stress, to be able to rest and sleep, and to generate positive attitudes that can all encourage healing. We do a relaxation exercise at every class. This was really helpful to me as I prepared for surgery. Not that I was calm before surgery -- but it did help.

We’ve also had sessions on cognitive therapy (learning to overcome irrational beliefs and fears), nutrition and cooking, and we’ll have sessions on yoga, tai chi, and humor. One of the interesting and valuable parts of the class has been to meet more people coping with cancer – but with reoccurrences and multiple types of cancer – and also to meet people with obscure illnesses, ones that make me say “Gosh, I’m so lucky that my illness is breast cancer! We have so many supportive programs and resources, so many organizations and helpful services targeting us.”

After Surgery

2004-10-15T03:47:00.000-04:00

I am very, very relieved to have the surgery behind me. Everything seems to have gone very well, and Dr. Jones is enthusiastic and positive; she did not find anything unexpected. When I see her on the 22nd, she'll have the pathology report back so we'll know all the results in detail.

I am feeling very energetic, and I was happy to leave the hospital after one day. It's nice to be home. I got great care at the hospital, but it can be a noisy place to try and sleep. An intern came to check on me at 5 AM, and after that I was awake to see quite a remarkable sunrise over the river.

I'm surprised at how clear-headed I am, not groggy or muddled (although I do tire easily) And am feeling almost no pain, I just have to move carefully. Am taking no pain killers. The one negative after-effect was the nausea. I woke up from surgery feeling hungry, and as I lay there in post-op, I started asking if I could order a pizza. This is about as funny as my craving Indian food after my first chemo treatment. When I did finally get into my hospital room, and ordered something to eat (chicken soup), it did not stay down very long.

Rosie and my Mom were there at the hospital all day, going with me into pre-op, and Rosie putting on surgical robes and going with me into the holding area. This was certainly full of activity: several nurses, the anesthesiologist, Dr. Jones, and another doctor (an intern). Every health care professional who worked with me had to ask me my name, birth date, and what treatment I was going to receive. The first two are fine, but I couldn't say "mastectomy" without blubbering. The anesthesiologist finally had to find some nose spray for me to try and clear out the congestion generated by the crying.

I went under easily, and as I woke up I remember at first thinking I was at home in my own bed. Even first waking up, I was surprised at how clearly I could think. I got wheeled to my hospital room (with a beautiful view of the Charles Rivers) and then was reunited with my Mom and Rosie.

I'm not upset at all to see my chest minus one breast, so I guess my apprehension was mostly about the surgery itself. It is strange to feel the concave area, the big drop-off from the sternum on the right side of my chest. But perhaps strangely, I'm not upset by this. The scar, underneath the plastic sutures, looks very neat. I do have two drains attached, little bulbs that fill up with blood and fluid, that need to be drained a few times a day. I'm OK with all this and am mostly feeling very relieved, and really happy with all the support I am getting from friends and family.

I am a connoisseur of bland

2004-10-04T22:08:00.000-04:00

Cancer changes things. That's obvious, but the list is long. There I was, contemplating the nuances of different types of tapioca pudding. MMMmm, pudding. Meanwhile, the entire dried bean category – which used to be such a favorite -- is right out, just because it doesn't sit well along with the lump I feel in my stomach so much of the time. But I'm happy that in general I can eat normally.

“I'm having a mastectomy.”
I've gotten to the point were I can often say this with a goofy grin -- it's sad, it even seems a little absurd, but it's true. There are just so many unknowns, so much trial and error, so much guesswork.
It could be that the chemotherapy has killed all the cancer. But there is no way of being certain, and we want to make sure that, if possible, no cancer is left.
I am feeling better now that I have more understanding; it helped to see a picture of my cancer, in my MRI, and to read some of the reports in my file. In my files my cancer is described as a "spiculated mass" -- it has long tendrils that go out from the center; like a starfish? An octopus? But not a lump, not a centralized tumor.
Other changes -- my eyebrows are down to a few hairs -- the few, the brave, the proud. The lack of nose hairs means when I cry my nose seems to drip tears just like my eyes. Someone observed they had never seen me with painted fingernails before. Yes, I got tired of looking down and seeing my bruised-looking thumbnails. And some of my fingernails have stripes of bruises, one from each chemo treatment. So I've been painting my nails.
I tell myself, loosing a breast is not like loosing a hand, or foot or eye. It's not like its something I use all the time. Also, it's not like losing a kidney or needing a heart transplant -- it's not like my breasts help me survive.
Still it's a part of me I see every day, and part of me as a whole person, physically. I just have to say “goodbye.” I've been thinking a lot about the reconstruction question. I think I'm not inclined to go that route. I am what I am, I’ve never wanted to have anything artificial. If one in eight women experience breast cancer, why should we feel any embarrassment at going around with one breast?

Chemo 8 -- the last one!!

2004-09-27T05:10:00.000-04:00

Definitely time to celebrate, having finished this stage of my treatment. The oncology nurses awarded me a Certificate of Completion of Chemotherapy, "having suffered in silence, with good blood counts, courage and determination." I'd been thinking about how all my experience and learning makes me feel like I'm earning a degree!

My final "Chemo party" was a festive one, lots of food, including cake, and me well enough to eat it all (although still dealing with thrush, which I can't seem to shake). The support of my friends has been so heartening.

I'm can't exactly say I'm "ready" for surgery, but I haven't been feeling the anxiety I had before my email exchange with my doctors. It does seem strange to me that we don't actually know how effective the Chemo has been. I have a lot of pre-op appointments: a CT scan today, so we can make sure there hasn't been any further spreading of the cancer, and on Friday a meeting with Dr. Jones to go over my MRIs and my diagnosis and to have her fully explain everything about the surgery.

My Mom has her plane ticket to come out; it will be great to see her and have her around while I am recovering.

One thing that has happened as a result of Chemo, is the onset of full-swing menopause. Most noticeable are the frequent hot flashes, resulting in my yanking off my hat and scarf and whatever other clothing I can dispense with. The likelihood of my returning to my previous peri-menopausal state is very small. So it's a big and abrupt change of metabolism.

Surgery Scheduled -- and my fears

2004-09-16T17:29:00.000-04:00

My surgery (radical modified mastectomy of the right breast) is scheduled for Ocotober 13. I am worried about this, but am feeling much better after the email exchange below with my Doctors -- very reassuring.

>>
Dr. Smith and Dr. Jones,

I'm feeling a lot of anxiety about my impending surgery. After seven chemo treatments, it seems a little silly to be in denial, but my diagnosis does seem kind of abstract to me. My right breast looks perfectly fine. Completely innocent. Apparently harmless. I wish there were some picture I could see of my cancer; after all, the dentist always shows me the problem on the X-ray before drilling. Is there anything from the mammogram, the ultra-sound, the MRI, that I could look at? If not a picture, details of results? Data? Documentation? Evidence?

I have the two one-page pathology reports, but there must be something more detailed than that - you must have big files on me, right? I don't claim my feelings are rational, but if I could see more information about my diagnosis, I think I'll feel better. Sorry to be labor intensive.

Signed, Sleepless in Somerville (Liane)

>>
Dr. Jones (the surgeon) replied:
I understand your feelings Liane. As I remember,
> the MRI showed the problem
> most clearly. If you pick up all your films and
> bring them to your next
> visit with you, I will put everything up and go over
> it with you so you will
> feel more confident about the need to go forward
> with the surgery.
> All the best-

<

and Dr. Smith (the oncologist)wrote:
I agree with Dr. Jones - the MRI may put things in better perspective. I'd also be glad to go over your inital diagnosis, staging, and go over the data that supports this approach.
Never apologize for having questions about your treatment -
that's what we are here for.

SO, I will be meeting with both these Doctors and will get more information
-- more than I need, I'm sure.

Chemo 7

2004-09-12T16:51:00.000-04:00

Pretty uneventful by this time, treatment seeming very routine. I felt fine, and had acupuncture. By today (Sunday) am feeling a little achy, and also tired.

But Friday, right after my treatment, I felt fine. I had my seventh chemo party, which was a little different from the others. I've been thinking a lot about my impending surgery, and trying to get ready psychologically. An artist friend proposed making a plaster cast of my breast. I thought about it for a while, and I thought it would feel nice to have a memento. I suggested that she do them both, so I would have "the set."

So, this was the "entertainment" at the 7th chemo party! It only took about an hour to make. She used plaster-infused strips of gauze, moistened in water. She smoothed them on, they hardened quickly and removed easily (I'd put some vasiline on my skin to protect it). We all had a lot of fun, and came up with ideas like painting it gold to make a breast-plate. I'll try to get some photos up on my other site.

Chemo 6

2004-08-28T17:50:00.000-04:00

Wow, only two more to go! The Taxol is so much less difficult than the Adriamycin, it is really a relief. No nausea, no mouth sores. No Rip-Van-Winkle days spent sleeping. Anyway, everything went great, except my hospital lunch came very late, so that my treatment was finished while I was still eating!
Chemo party was fun, the foods I can eat are getting back to normal, still taking it easy on acidic and spicy stuff. We watched Mel Brook's "High Anxiety" ;-)
I've been reading about surgery. Hmm, I have an easier time with the word "surgery" than with the word "mastectomy." Part of my difficulty is that my cancerous breast still looks perfectly normal (except for the little punched out holes from my biopsy). A member of my support group, who also has IBC, says she can't wait to get her mastectomy: "It's swollen, it's discolored and I get shooting pains from it all the time -- get it off me!" But mine's not like that. It looks completely innocent, and a pretty good match to the other breast. Maybe I need to look at some of my own cancerous cells under a microscope.

Peggy Phlegmy

2004-08-25T21:32:00.000-04:00

The short version -- I had a cold, and that turned into a bronchial cough so now I'm taking antibiotics. Have not had any loss of energy or fever or more serious symptoms. Symptoms are now much better.
Long version --
I've been having a lot of congestion for some time. For a while, when the Adriamycin was having so much of an impact on my mouth and throat, it was hard to tell what might be a cold and what were chemo symptoms. But finally the cough turned into coughing something up, rather than just clearing my throat of killed-off cells.
So on Monday I went in to Dr. Smith, who prescribed an antibiotic that only needs to be taken once a day for five days. I am feeling much better, and have been coughing less, but more "productively." Yesterday my roommate pointed out that I had a chunk of "product" stuck to my eyebrow. Good to have a roommate so I don't leave the house looking like that!

Chemo 5 -- Round 2

2004-08-14T22:43:00.000-04:00

My medical team is emphasizing that I'm on to round two of my Chemo. I've finished with the Adriamycin/Cytoxin and am doing well, so it's on to the next round, four treatments of Taxol. The Taxol was not so bad as it dripped into me (I felt it less than the other drugs), and then I also felt quite energetic the rest of the day. But this was probably because of the steroid (Decadron) they gave me along with the Taxol, which they do because of the chance of an allergic reaction to Taxol. So my fifth "Chemo Party" was the first one that I stayed awake through its entirety!
Another exciting thing is that the time of my treatment has been moved up, so a nurse came around with a menu so I could order lunch -- it was just like getting to order from the room service menu! And the kind of nice bland, soft food that I like!
Today (Saturday) still feeling good, except for some congestion -- due to both a bit of a cold (following the visit of my sister and her children) and the ongoing irritation of my mouth/nose due to the chemo. I've been assured that this may get better with the Taxol (although my eyebrows are at risk).

Family Visit

2004-08-12T20:02:00.000-04:00

Have enjoyed a busy visit from my sister and her children, my niece (age 14) and nephew (age 12). I've lived in the Boston area off and on from 1990, and consistently since 1996, and this is the first time they've visited! It was great to see them, and to do a lot of fun tourism stuff, including the Isabella Stuart Gardner Museum (my favorite), the Science Museum, Newport, Plimoth Plantation, and the Duck Tour. We even tried that New England specialty, Candlepin Bowling, which we found much harder than "regular bowling."

I still have eyebrows!

2004-08-01T13:13:00.000-04:00

I still have eyebrows, which I'm very happy about. Lashes are thinning, which causes some eye irritation. Skull stubbly with some smooth patches. Other body hair thinning. Armpits as smooth as a baby's. But really, the eyebrows are great to have.

Chemo 4

2004-07-31T21:25:00.000-04:00

Like the previous two, not so bad, and I think the acupuncture is really helpful in keeping my energy level up. This was my last one of Adriamyacin/Cytoxin, however. On August 13 will have my first of Taxol, which has different side effects -- no nausea, but achiness, numb extremities, fatigue. So we'll see.

SUPPORT

2004-07-28T13:08:00.000-04:00

In the past, I think I was the kind of person who was made uncomfortable by other people’s illness. I hope I did not run away from friends who were sick, but I think I may not have been very supportive or helpful. I didn't know what to say.

Now I get to learn about all the wonderful ways that friends and even acquaintances can be helpful and encouraging. And I can experience the difference it makes. I’ve been helped by so many people going with me to treatments, shopping and running errands for me, moving furniture, all kinds of things. I've gotten calls and cards from people I've emailed with but never met. I've heard from relatives and friends I haven't been in touch with in years. Particularly helpful is to hear about the many other survivors -- people I didn't know had experienced cancer and who now are living normally.

Here are some of the moving and inspiring things that people are saying:

May the medicine do its magic,
May your soul remain strong, and
May friends provide fun and fancy in the weeks ahead.

So very sorry to learn of your travails. But your upbeat spirit comes through no matter what. Life demands that of us at one time and another - I know this personally - and somehow we hang on and carry on - and good things can happen, too.
My son … is coping in ways that I could never have imagined. Stay strong! With affection and hope.

Your "soldiering" stamina is beyond my imagination. In both of your situations you have my support and respect, as well as a hope that "my bad news" will become "my good news."

As a breast cancer survivor, I know what a difficult and anxious time this must be. I am glad you will keep us informed as to the treatment, diagnosis etc.

I don't have a proper vocabulary in English to express my sadness and feeling of compassion for you. The life hits unexpectedly and very mercilessly sometimes, but you could be surprised to bump into even more
unexpected happy turns. …Be strong and do not lose sense of humor. Surprisingly, but it helps.

Dear dear Liane,
I'm so grateful for your sharing all this! First, I knew none of the cancer news; second, I never saw any blog before, didn't even know what it was; third, I'd heard nothing of your publishing challenge; fourth, I never heard any details from anyone before about the chemo experience. So it's all new, fascinating, terrifying, intense, and real, very real.
Once again I see the force and strength which comes (only?) from facing adversity and crisis -- hopeflly with insight and humor and honesty. Bless you so much for sharing it with me, with us.

Here is to your feisty spirit!

Your Mom has told me that you have many friends who will take your family's place during the next few months. If your mother will let us we will try to do the same for her here.

Chemo 3

2004-07-18T21:23:00.000-04:00

Again (like after Chemo 2) the nausea was much better, but I wanted to try and do something about the fatigue I experienced; even after 4-5 days I was still very tired. Many of my friends swear by acupuncture, so I decided to try it. I went to someone recommended by the Social Worker who facilitates my support group. The acupuncturist is a very no-nonsense New Englander (which is good, as I have a low tolerance for New Age types), and she could take me right after my treatment. Laura C., a very good friend, went with me to treatment and then drove me, as Rosie was not feeling well.
I had never had acupuncture before, and it was not quite completely painless, but once the needles were in (four in each ear) it was quite relaxing. I lay on my back for this. She also stuck on some tiny little balls to stimulate the meridian point – she left these on. Friday night I felt pretty good, and my color was better, less green-ish gray. Saturday AM I woke up “zippy,” as Rosie described me. Saturday and Sunday I’ve done some napping but also had some energy for doing errands, walking the dog, etc. Not much concentration for reading, but have watched some TV and videos.

My Care – the Doctor, Support Group, the Hospital, Advice

2004-07-14T11:05:00.000-04:00

A couple of people have asked me about the quality of care I'm receiving. To try and keep the names of the staff anonymous (can this blog be Googled? I don't know.) I'll be elliptical about the where as well as the who.

Anyway, I am very pleased with my quality of care, and feel lucky that it is at one, very respected Hospital, whose geography I am starting to feel comfortable with. I'm glad it's not a really huge hospital, and that the oncology wing is in a small, easily navigable separate building.

I continue to marvel at Dr. Smith's energy and optimism. She is just so upbeat, yet sensible. But best of all is the Social Worker who meets with my support group every week. She is such a knowledgeable resource -- all she does is work with breast cancer patients -- and so endlessly compassionate and caring. Every theory, every study about possible treatments, she knows about. It's just great to have someone like this be so accessible.

My Illustrious Support Group

The group members themselves are such great people. The three of us who are dealing with IBC also have cats, so last time we devolved into a cat care and psychology discussion. At home I feel like I run senior feline assisted living center (although there are only two cats -- a third passed away in 2001).

My group colleagues are just full of important words of wisdom, as well of encouragement. It's so great to know we all go through (occasionally) things like waking up crying, starting to cry in the middle of the day -- not really knowing why, just the abstract weight of it all. We all (in chemo) have mouth sores, as well as hair loss, and it's nice to also see members with hair growing back a reminder that this is a temporary condition.
I had asked Dr. Smith about my mouth sores, so she briefly pulled my out of my Support Group to look at them. But by then the group had already answered all my questions, I told the Doctor. "Ah, yes, that is a very illustrious group," she replied. And so it is!

IBC

So three members of my group have IBC (Inflammatory Breast Cancer) -- pretty remarkable, considering that IBC is only one to four percent of all breast cancers. But lucky for me, I must say. A group member had this advice, that I decided to write down to help myself really absorb it --

to always ask these two questions, when learning about the next stage of treatment or treatment possibilities:

(1) Are there any other possible side effect or results to this treatment? I'd like to know about the full range of possible outcomes.
(2) are there any specific considerations I should have because my cancer is Inflammatory Breast Cancer?

Mom's good news

2004-07-13T16:34:00.000-04:00

Mom had her pre-cancerous lump removed on the same day as my Chemo 2. Although she had general anesthesia in the morning, she was alert and played a full game of Monopoly with her grandchildren in the afternoon (while my sister napped)! Mom felt fine and had no pain or ill effects. My Supermom!! Then ten days later, she met with the Doctor, who told her that the operation was a complete success, that all the pre-cacnerous cells had been removed and there was no sign of any further disease. He advised that she take tamoxifen, and she is going to consider that.

Hair today ....

2004-07-06T23:02:00.000-04:00

It was falling out all over, not in huge clumps, but in small wisps, making a mess on everything I came near. So I bought a set of clippers, and got my friend Claire (experienced in head-shaving) to do the honors. I was glad to have this done in my own home, and not to be sitting in a salon. Claire did a great job. It feels less itchy and less sensitive now; I’m glad to have it all off, and not to have to worry about it coming off in my hands and everywhere. I’m getting used to plunking my wigs on just like a cap. Although I did go out in the yard briefly forgetting I had "nothing" on my head! A funny feeling, to have this "new" way of being "naked."

Chemo 2 and Harry Potter

2004-07-03T12:59:00.000-04:00

So far, chemo 2 has been much better than the first. Having alerted my medical team to the nausea of last time, they gave me two new drugs to take (in addition to the others). So now I am taking both a $100 pill and a $60 pill! Both, fortunately, in free samples, which seems like such an odd maneuvering demanded by the medical system.
I was still very tired, but so far there has been no nausea at all. I was even able to eat with my friends who came over for my second “chemo party” – I had macaroni and cheese, and I won’t describe the stuff they had, beyond noting that my placid 15-year-old cat Pamela turned into a wild animal chewing on the bones. Today, Saturday, I'm feeling good, quite perky.
During the chemo session itself, Rosie & I started watching the first Harry Potter movie. She is a dyed in the wool fan, and I am a new initiate to this cult. The movies are enjoyable in many ways: as I’m a real Anglophile, who could resist to setting of College life, mossy professors, magisterial dining halls, etc. But some of the characters are such thinly draw stereotypes of bad or good. And the action scenes find it hard to lift themselves from similar scenes of film history – the aerial game played on brooms is so much like horse races (or the Ben Hur chariot race) that we have seen before. So much for film criticism – I’ll see the rest of the HP films, as long as I’m able to get up and stretch in the middle!

Support on "Planet Cancer"

2004-06-29T22:49:00.000-04:00

The Breast Center at the hospital has set me up with a support group that I am very excited about. The members range from four years since diagnosis, to me the newest to be diagnosed. What an articulate and interesting group of women! Everyone has so many helpful insights about their treatments and their emotional and psychological processes. I am learning so much about the surgery and radiation that I still have ahead of me. Also all kinds of thoughts about coping with hair loss – and then regrowth, and with other matters like our family members’ response to our illness. I am really feeling very fortunate. If I were in Ohio or somewhere like that I wouldn’t have such an insightful and passionate group to be involved with. Everyone is so committed to offering support and ideas of all kinds. We also have a wonderful facilitator, a social worker who is so knowledgeable about cancer and all the innovations and advances. She is very available; much more relaxed that the doctors are able to be.

A fun day at the “Wig Shack”

2004-06-24T23:17:00.000-04:00

On my list of “all the good things about cancer” is going to be: “Buy wigs, your insurance pays for it!”
So Rosie and I had a fun excursion to the “Wig Shack” today. That’s not its real name, and this is a specialty wig and prosthetic boutique just for cancer patients and survivors. It was fun, trying on the wigs, and also all the turbans, wraps, special scarves, etc. and then being instructed in my wig “care and feeding.” So I am now the proud owner of two wigs, both with short hair in about my color, in two different styles.
It is nice now to have all the barrage of tests over with, and to be able to think a little about the future weeks and months. It is hard to believe my hair will fall out and I am especially worried about the loss of my eyebrows. I guess the eyebrow pencil is the only way to go, no one is offering fake eyebrows. Also in the “Wig shack” were prosthetic breasts, and I guess that’s something I have to face, too.
It continues to be very moving to get so many positive responses and offers of support from friends – including friends who have wigs they can loan me. And my mom has her old wigs from the 1960s – the ones I had fun in as a child and teenager! A quality wig really lasts.

6/23/04

2004-06-23T23:13:00.000-04:00

My chemo treatment just seemed like a bad bout with the 'flu. By Tuesday, I felt a little weak (and still not able to eat much) but other than that, back to normal. Some of the effects are cumulative, like the fatigue and the effect on the immune system. One of the booklets I was reading was warning not to floss your teeth, because if you make yourself bleed, you risk infection! Seems a bit extreme, considering the health (and aesthetic) effects of not flossing!

First Chemo

2004-06-19T18:51:00.000-04:00

Yesterday was my first chemo treatment. I was little nervous, but it all went very smoothly. Rosie came with me and it was so nice to have her there. The facility is pleasant, we had a little private room, and I sat in a big reclining chair. The treatment lasted about 2 ½ hours. We picked out a movie to watch on the little VCR (“Best of Show”) so I was howling with laughter as the Gretchen the nurse came and went to check on my IV drip. The IV was on a rolling cart, so it was easy to get up and go to the bathroom.
Gretchen and then Dr. Smith explained all the possible side effects – nausea, fatigue, lowered immune system). There will be eight treatments (4 of Adriamycin/Cytoxan, then four of something else), two weeks apart. After that there will be a evaluation of the progress. If the radiation is successful in localizing the cancer, then there will be a mastectomy. I was aware of this, but it is still hard to speak about it. On the bright side, Dr. Smith thinks there’s no reason to remove the non-cancerous breast. (I’ve joined an IBC discussion list that has a lot of talk on varying issues like this).If there was no progress through chemotherapy, there would be no reason to do the mastectomy, and that would be a very bad prognosis.

Leaving the treatment I still felt fine, just a little light headed. At home I decided I felt like Indian food (!!!) and called a friend to bring over some take-out. Before the food came, I took a stroll to the Library and on the way back I felt some slight signs of nausea. In short, Indian food was the last thing I wanted, and I spent most of the evening clutching a plastic basin and wondering if I had just thrown up by $60 anti-nausea pill. Well, that was agonizing, but really much like a bad bout with flu or food poisoning.
I got a good night’s sleep and have felt pretty good today, just a little weak, I took a nice long nap. So maybe that will be the pattern for the treatments, I’ll feel my worst the night after and OK after that. I am still taking anti-nausea medication (They gave me some samples of the expensive pill.)

2004-06-17T21:36:00.000-04:00

Thursday – Mom spoke with her surgeon, and sounded relieved. He calls her condition “pre-cancerous” and says it can be treated with a lumpectomy. So that sounds very hopeful. A lot of people calling and wishing me well and offering to help for my first chemo tomorrow.
Am missing a conference I was supposed to attend, the National Women’s Studies Conference, a friend and colleague will be reading my paper (on Rebecca Clarke and Virginia Woolf). Also Mom has cancelled our vacation plans (which had sounded so good, to go to the Shakespeare Festival in Ashland, Oregon – my birthplace, my parents were actors when the Festival was small). Mom is now (again) talking about coming out here to take care of me.

Good News, me -- Bad news, mom

2004-06-15T18:33:00.002-04:00

Good news
Monday – June 14. Learned that my bone scans and CT scans are all normal. The staff person who told me this was very matter of fact, but my friend Laura M was exuberant “You don’t know how great this news this is, this is SO important.” And it is, that the cancer has not spread to the bones, or any other organs -- brain liver, kidneys, etc.

Bad news – Mom
Tuesday was a rough day – my mother learned, exactly a week after I got my diagnosis, that she has breast cancer, too, “ductal carcinoma in situ” (contained within the a duct of the breast). That’s a shock and that we would both be learning this at the same time. And my sister, now with this sudden family history of breast cancer. She says she has a spot on her breast that the doctor said might be a spider bite – that’s one of the frequent mis-diagnoses for IBC (inflammatory Breast cancer). So it’s all a bit nerve-wracking.

2004-06-12T16:40:00.000-04:00

June 11
A full morning of tests – CT scan and bone scan. Yum, yum, got to drink two bottles of a delicious “berrie smoothie” to prepare for the CT scan. (that’s sarcasm ;-P – it was very chalky) Was thinking how bad it must be to go through this as a non-native speaker of English. The CT scan technician explained everything thoroughly, but talked so fast! I was very relaxed and even started to fall asleep, forgetting to listen to the automated voice (like the evil computer in “2001?”) telling me to ‘breath in” and ‘hold your breath.” The bone scan people didn’t explain anything at all, and even traded me wordlessly off to another staff team while I was strapped in on “the rack.” It’s all so routine to them (of course), but I need to ask more questions, like “how long will this take, 10 minutes or an hour?” (it took about 20 minutes)
My mom tells me she thinks about me all the time, and she wants to come out to take care of me. Of course all my friends here are willing to help, so that’s not necessary. Meanwhile she is having her own tests done, an MRI for her pituitary gland, and an biopsy of a “calcification” in her breast. But she says she doesn’t expect them to amount to anything – is that denial or optimism?

Although the biopsy was eight days ago Right Breast is still spectacularly bruised – chartreuse with purple accents. It’s amazing, the things the body is capable of.

June 12 – did another book signing event – I am so lucky to have these wonderful musicians who will work with me

meet the oncologist

2004-06-10T20:55:00.000-04:00

When Doctor Jones asked me if I had a preference of a male or female oncologist, I didn't say "ooh, yuk, men," just "whoever was the best, but if it didn't matter it was nice to have a woman." She thought the woman (let's just call her Dr. Smith, since I haven't asked if I can write about her on my blog) might have more availability, so I went with her. Yesterday, we (Rosie and I) met her and we both really like her. She was full of friendly and intense energy, and a real passion about her work. She thought that Rosie looked familiar, and Rosie suggested that maybe they had met in the Lesbian community. The doctor wound up telling us her wedding was on Friday, with her partner if 18 years. Their 12-year old son is the best man.
Dr. Smith explained a lot about my type of cancer, inflammatory breast cancer, with an emphasis on how much change and progress there has been in the treatment. She was emphatic and resolute that this can be cured. I will be starting chemo on 6/18/04. I should have been in Milwaukee to read my paper for the NWSA at that time.
I also had more blood tests, and on Friday I go in for a CAT scan. Being in a hospital means a lot of going from floor to floor, registering for different tests, filling out forms again and again. I had a funny incident where someone was registering me for my blood test, typing in my information on a computer form -- name, address, etc. She asked me "Your religious preference?" Thinking she had boxes to check, I asked "What are the choices?" She looked at me with complete astonishment and then we both burst out laughing.

Thoughts on being a light crier

2004-06-08T19:07:00.000-04:00

I’ve always been a light crier. Sometimes I state that a bit differently – sometimes the desensitization that life in our modern world seems to demand is a skill that I am lacking.

Thinking about the health care workers who have been so kind to me in these intimate moments and who I will never see again.

When I had the ultra sound, the room was dimly lit, and thus my tears escaped notice. Or did they? Is it better for them not to be noticed? A sympathetic reaction seems to provoke more tears. Or is it better to acknowledge them, and thus have the expression of human feeling be an exchange of communication, a sharing? I’m having this emotion – is it private, do I want it to be private, or is it a time to offer heartfelt compassion? Gosh, putting it that way, I’ve answered my own question, huh?

After all, I felt silly crying in those medical exams. I’d had ultra-sound before. It’s pretty routine, not scary. Of course what was scary was the thought that it might find something. And the stress – with them peering, looking, like through the periscope in a tense submarine movie, they really expected to find somet

Of course there’s the practicality of my crying being noticed. If I am lying on my back and weeping, I’m going to need some hankies and will need to blow my nose.

What really should someone ask? “Are you ok?” Can I get you anything? (Yes, hankies) Or something reassuring “it’s OK” when of course – it might not be, and anyway, I need those hankies. The gentle squeeze of the shoulder is a nice thing – boy am I noticing that. It’s hard to think that strangers can be caring – after all we spend so much time learning not to trust or believe strangers – even our friends and loved ones – but sometimes people quite simply are.

Could I track down that Irish nurse who squeezed my hand so reassuringly, to thank her?

There is the embarrassment that it is difficult to talk while crying. I mean I don’t want to start sobbing out loud. It’s not a crisis; it is an ordinary moment, in many ways.

There is the odd sensation – the physical sensation of the tears rolling down and pooling in my ears, indeed, filling my ears, drop by drop.

Away from the hospital, from the exam table, I am still capable of surprising myself with crying. Waking up crying just being struck by the realization that I’m sick – I don’t feel sick, I just have to grasp that fact. Wanting to learn more about my cancer, but reading can trigger tears – I am going to go through all this? But I feel so well. As I work to grasp it all, I am just very grateful to have the wonderful support of my family and friends.

"And 'positive' is bad, right?"

2004-06-07T22:09:00.000-04:00

So it all seems to have happened very suddenly. The call came on Monday morning. Dr. Jones always seems to call me right away. The results of your screenings were positive for cancer," she said. "And 'positive' is bad, right?" I was thinking. Rosie and I went in and discussed the results. This all sounds so calm as I describe it, but I was doing a lot of crying.

Anyway, my treatment will start with chemotherapy to try and localize the cancer, which has spread through the lymphatic system of the breast. Wednesday, June 9, I meet my oncologist, Dr. Smith. Friday I have more tests done to see if the cancer has spread. Inflammatory breast cancer spreads quickly and since is difficult to detect, it is usually at "stage III" by the time it is discovered. I feel like such an expert already. The support from all my friends and family members is very moving.

So my book tour is on hold! I have a good capacity to see all new experiences as an adventure, so this is going to be quite and adventure for me.

There was no lump

2004-06-07T01:21:00.000-04:00

I'm not sure when I noticed that my right breast was looking a little larger than the left. There was also a little discoloration, like slight bruising. Was it sometime in the Fall of 2003? Maybe even as early as August, when I 'gave up' coffee -- could that be related, as a change in metabolism? When I asked my General Practitioner about it in December, she thought it was just a hormonal change. Certainly all the menopause books say that swelling and tenderness of the breasts is something that happens. The bruising went away and the swelling was not very noticeable.
On May 18, I happened to be back at the Doctor's office with a cold that I thought might be strep throat, and my girlfriend, Rosie, had urged me to ask the Doctor about my breast. The right breast still was oddly larger than the left, and that its texture felt different, firmer, sort of heavier. So my GP gave me a referral to a specialist. I was very unconcerned about all this when I went to the specialist, Dr. Jones, on May 28 (doctors' names have been changed). After all, the only irregularities were this slight change in my breast. There was no lump. There was nothing to 'find' with those monthly self-exams. My mammograms in September had been normal. And I felt great.
Dr. Jones was concerned. Things started happening quickly. I had mammograms and ultrasound that day. I hadn't envisioned that I'd be spending my Friday in a hospital gown. I'd come in a carefree person, in a hospital almost by accident, and now I needed lots of tests. All of a sudden I was a patient. Was I sick? We scheduled an MRI for the following week.
But first thing after the Memorial day holiday I got a call for Dr. Jones' office -- they could get me in for an MRI that day. There was a sense of urgency. Then on Thursday I went in to meet with Dr. J, I thought that this was to talk about the tests so far. Rosie came with me and was such a help. Dr. J wanted to do some biopsies. This was done with a long needle that collected "core samples." I kept my eyes closed, but it felt like a staple gun -- not painful, as I was numbed, but that sound and sense of impact. I left the hospital with an ice pack in my bra, and went to lead a Women's History Walking tour of the Back Bay! Not good planning.
Dr. S did another biopsy of the skin the following day. Still no results from all the tests, so I was trying not to worry. Sunday I had my book party (www. rebeccaclarke.org) which was incredibly fun and a great success.