Support on "Planet Cancer"

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”

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

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

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.)

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

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.

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

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

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?"

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

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.