My Journey Defeating the Black Spot

Saturday night, I found a lump in my breast. More accurately, Lola found it. She had climbed onto my chest (cats!) and was pawing/scratching in a weird way on my breast. I put my hand in the spot where she was doing this and felt the lump immediately.

I think the girls have been trying to get my attention about this for several days. Just a few days ago, Tilly rubbed my coffee cup (which I was trying to drink out of) so hard that it spilled my coffee directly on my left breast. I was so busy leaping up and yelling (it was hot and, more importantly, I didn't want it to get on the white sofa!) that I wasn't in the right place to go pressing on my breast. A couple of days ago, Lola did something she has never done before—she nipped at my breast!

So, my thinking is that the girls were doing their best to tell me something is up, and finally Lola figured she was going to have to do her cat equivalent of pointing.

This is not the first time I've found a lump in my breast. Eleven years ago, back when I was married, I was sitting at the computer when my husband came up behind me. He ran his hands from my shoulders down my chest and ended up feeling a lump. It seemed to develop out of no where and was very distinct (much more so than this one). In that case, it turned out to be a fibroedenoma, a type of benign breast lump.

From my research back then, I know that 80% of the time, breast lumps aren't cancerous, so I am not jumping to any conclusions. However, when your mother (and her mother, and her mother) have had breast cancer, you are always on alert. I'm from the "let's get this over" school -- I want to be seen quickly, get a mammogram, get an ultrasound, find out the diagnosis, and hopefully do this in under a week and a half. Hey, it worked for me last time--I had my surgery the day after meeting the surgeon, simply by asking if they had any cancellations. I just don't like to have time to brood over these things when they are likely to be nothing.

Unfortunately, though, I will have to wait until the 22nd to see my doctor. I'm going to my primary care physician because I don't have a gynecologist anymore and don't want to see someone brand new for something like this. Besides, she's a good doctor. It's a good thing that I have a lot going on getting the house ready, as there's no point in thinking ahead with this.

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I was reflecting recently with our realtor on life as a busy person. As naturally organized, efficient people, we're often living in our heads. Our desire to "get the job done" enables us to tune out lots of things that seem in-essential. Just last weekend, while shopping at Lowe's, Kathy commented on how my foot must be hurting, because I was limping. I had totally forgotten about the pain radiating from my ankle! It wasn't until she said that, that I checked in with my body and realized, oh, yes, I do still hurt. I was so focused on trying to find the right replacement for the hall light that I stopped noticing!

Obviously, being out of touch with your body isn't always a good thing. But I must say, it serves me well right now. When friends ask me how I'm doing, I launch into the latest update on the house makeover, not realizing that they are really asking about the lump in my breast. In my mind, I can't do anything about the lump until I see the doctor, so it's on the back burner. The appointment has been scheduled and that's all that can be done for now. Now is the time for calling the house cleaners, getting the heater repaired, and trying to locate a bag of wood pellets for the stove.

I will say that, late at night, when I'm going to sleep, I do think about it. I think about what I will do if this is cancer. I think about my mother and I miss her. But, lucky for me, the morning always starts with my feet on the ground, PDA scheduler in hand, and a day full of things to manage.

Sometimes, that's a very good thing.

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Last night, Lola was using my chest as a roadway (I guess she had places to go) when I sneezed. Never sneeze when a cat is standing on you, especially if she has needle-like claws. Startled, Lola launched off my breast, getting plenty of traction. Traction translates to a lovely, long scratch across the pointy bit of my breast.

As I clutched my breast in pain, what did I yell? "Ow"? "That hurt"? No, I yelled, "Omigod, Lola, what are you doing? I have to show that breast to the doctor tomorrow!" Yes, indeed...my first thought was about what people will think.

While showering this morning, I felt the lump in my breast and for the first time thought, "This is just a cyst." I mean, what am I worrying about? It even feels like a cyst. I figure the doctor's appointment is just one of those necessary formalities.

Relaxed as I was about the appointment, I didn't stay relaxed, because it took Kathy and I an hour and a half to get to San Francisco. San Francisco is only maybe 30-35 miles away, and we were driving in the middle of the day! The backup at the Bay Bridge toll plaza, however, has only worsened since they started the FasTrak system of automatic toll-taking. I'm not sure why that is…shouldn't it be better? Maybe it's because they converted a number of toll lanes to FasTrak only, and not that many people have transponders yet. At any rate, it took way too long.

When I took off my gown for the doctor, I felt compelled to explain the bright red scratch on my breast. I didn't want her to think I was into something kinky. (Of course, I can't imagine what that would be…but…I felt it was best to say something anyway.) She did a breast exam, felt the lump, and said that she, too, thought it was probably a cyst. Normally she'd have me come back after my next cycle to see if it was still there, especially given that I'm only 40 years old. However, given my family history of breast cancer, she felt it was best to play it safe and send me for a fine needle aspiration (FNA) today. She gave me a slip to take to UCSF (University of San Francisco medical center) this afternoon. Oh, great, more people to explain that weird scratch to!

At the UCSF FNA clinic, a woman (who I assume was a resident or a fellow) explained the procedure to me. She said that the cytologist would insert a thin needle into my breast, directing it at the lump, and draw some fluid from the mass. They'd put the fluid on a slide and examine it under a microscope to see if there are any cancerous cells present. She told me that they usually took two or three "draws" to make sure they get an adequate sample. Because the needle was so thin, she didn't think it would hurt much, but she said that lately the cytologist was "getting soft" and used an anesthetic. She was a very nice person and I took that as a tongue-in-cheek remark.

The atmosphere changed when the cytologist came in, as she was all business. With her conservative blouse, straight tweed skirt, and strong Swedish accent, I had a hard time imagining her "getting soft." She had me show them where the lump is so they could determine how to direct the needle. Then she guided the resident through the procedure. There was no anesthetic involved, but I think that might be because I led them to believe I wouldn't need any. I tend to do that kind of thing without realizing it. I won't say it didn't hurt—it did—but it wasn't screaming pain or anything. The cytologist examined at least one of the slides while I was still there. She pronounced me "all clear" and said that I'd also hear from them in a couple of days, when they submitted the final report.

So, all done with that! I can't say that I ever want to have needles stuck in my breast again, but I am glad to get an answer without surgery. After all, I've got things to do!

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This morning I was awakened to the telephone. It was just after 7 am, and my doctor was calling. That can never be good.

She said, "I need to see you today. Can you come in at 11:45am?"

It was as though the center of my body assumed more gravity and everything came into sharp focus. I said I assumed it was bad news. She said, "It looks like cancer."

I woke Kathy up and told her the news. Maybe I was supposed to cry or something, but deep down inside, I felt like I already knew this, and now I just wanted to know what was going to happen next. It sounds strange, me saying that after I thought it was a cyst last week, but I knew.

Four and a half hours later, while waiting in the exam room, I opened a magazine that had a sidebar about advances in breast cancer treatment. It talked about a new test called the Oncotype-DX that examines genetic markers in the tumor tissue and more accurately suggests a prognosis. I thought it was very convenient for Marge and Norm to give me relevant reading material while I waited, so I could be engrossed instead of worrying. It really was fascinating stuff.

My doctor walked in and gave me a big hug. I felt her compassion rolling over me, comforting me. She didn't want to be telling me this. She said me that the cytologist who drew my FNA was upset that she had led me to believe I was fine, when in fact she hadn't yet examined the second draw. My doctor received the results on Friday and had been unable reach me in person. Wisely, she chose not to leave me a phone message that I could agonize about all weekend long. She confessed that she was up since 5 am this morning, knots in her stomach, waiting until it was late enough to call me.

How many people have a doctor this thoughtful and this caring? I felt very blessed.

She went over the test results and showed how we really don't know much as of yet. She pointed out that I could have caught this at an early stage and it may be small, so we can hope for that. My next step is to see a surgeon. I suggested I see someone closer to my home and she looked at me very seriously. She rested her hand on her chest and said, "If this was my breast, I would want to go to UCSF. They are a leader in breast cancer research. Don't take chances with this."

She asked me if I wanted a prescription for Ativan and I looked at her blankly. Do I want one? Am I anxious? Will I be? I have cancer…I have cancer. She said, "Wait, I'll get you the prescription and I'll be right back."

When she came back, we talked a bit more and then she gave me another hug. I had the numbers I needed to call to get an appointment at UCSF, so I headed out.

I contacted some friends to let them know. Two of my close friends wanted to talk to me on a three-way line and offer their support, but I have to say that I wasn't really in the right space for that. I felt like I was talking for their sake, because I really wanted to be drawing inward to think.

It is hard to explain how I already knew. If you've had something like this happen to you, perhaps you know. There is an absence of shock and an intensity of focus, that is hard to explain. I had my deliberate, carefree time last week in between having the fine needle aspiration and getting the results. Now it is time to get on with things.

The phone was glued to my ear all day. I kept calling UCSF, trying to get an appointment with a surgeon. The appointment scheduler was out of the office, of course, and it was unclear who could help me or if I needed to register somewhere first. I didn't get anywhere.

My conversation with my sister was comforting. When your mother has had breast cancer, I think you are always waiting for news like this—at least, we were. And of anyone, she was most affected by my news, because I'm sure she thinks that it could have just as well been her. I know my sister sensed my longing to be able to turn to our mother for comfort, but it's been nine years since her death, so we turn to each other.

I'll be honest; I didn't really feel like calling my father. I felt I had to, though, because he had been leaving me messages, asking for his "long lost daughter who fell off the face of the earth." I knew he wanted me to send him DVD of photos from the wedding. I hadn't been able to create it yet given the long hours I had been working on the other house. I have spent hours retouching the photos and preparing them, I uploaded them to a service so that he could order prints, but I didn't yet prepare the directories of JPeGs and TIFF files or burn the DVD. It's not like he didn't have the photos; he just didn't have the files.

So I called him back and told him about the cancer diagnosis. He told me he would pray for me and did his commercial for God, and then…he asked about the DVD. He asked if I got a full length photo of him and his wife together. He asked when I can send this out.

I felt speechless. What do you say to a father who responds to your cancer diagnosis with that?

My sister reminded me to call my brother, and I was glad that this was my last call of the evening. My brother has been through a great deal in the past year and he has revealed himself with more sensitivity as a result. He was very generous with offers of assistance and compassion. I was reminded that my siblings are very good people.

So, it's off to bed for me, and tomorrow I hope I will get the surgeon appointment that I want. I want to get moving with this. It's like anything else in my life: once I know the situation, I want to gather the information I need and start taking action. I don't want to worry until I know what to worry about.

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I spent most of the day still trying to get through to UCSF for an appointment with a surgeon. They set me up for a mammogram on Thursday at 8 am. An 8 am appointment in San Francisco means I need to leave here at 6 am. UCSF may only be 35 miles away, but that's 35 miles through a tunnel and across the Bay Bridge.

Meanwhile, the breast care center phone system says, "If you're a new patient, press this number... if you have not yet registered, press this number...if you have registered and need an appt, press this number…."

Ack! I don't know if I'm registered! Which button do I press?

Well, finally, they called me back and said that the surgeon can see me on April 12th. Now, I know I'm impatient, but that seemed like a million years from now. Trying not to sound like the crazy lady, I asked, "Can't someone see me sooner?" The scheduler put me on hold while she asked a surgeon if she'd be willing to see me this Friday (she usually only sees patients on Wednesday) and she agreed. Thank you, Marge and Norm!

Honestly, I didn't know I could be so feisty. Go, me!

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I was up bright and early to head to the city this morning. Since it took two hours to get into San Francisco last Saturday, Kathy and I made sure to get out the door by 6 am. We needed the time, too. I tell you, I couldn't do that commute everyday.

My mammogram was at the UCSF Diagnostic Imaging Center, across the hall from the Breast Care Center. After I filled out a legal-sized questionnaire, a technician took me in back. There's waiting area with chair, lockers at one end and several changing rooms off to one side. The tech explained that I change into a gown, put my clothes and things in a locker, then wait in a chair until I'm called.Then they'll take me back for the mammogram and afterwards have me wait again in the changing room area, while they check the films. Simple enough.

There were five or six women waiting, reading magazines, furiously finishing off their questionnaire, or staring anxiously at the wall. It was very quiet. Soon enough, the tech called me in back.

Now, this wasn't my first mammogram; I had one 11 years ago when I found the last lump. Somehow, though, this one seemed more aggressive, with a lot more contorting. It also took a while because the tech had to use more plates seein' as how I'm…a-hem…bountiful. Yeah, sometimes I'd prefer not to be full-figured.

I waited while they developed the films, then they asked me to come back for more magnifications on my other (presumably non-cancerous) breast. I tend not to worry about that kind of thing because, for all I know, they just had me positioned in a way that didn't give them full view.

After that, they summoned a radiologist who needed to do an ultrasound on me. (Uh, the way I wrote that sounded a little Buffy the Vampire Slayer. Hmmm.) The ultrasound was done in another room, a dark room with subtle glowing lights. The radiologist, about the same age as me, was very funny. I think all of these doctors are used to dealing with very somber patients. I'd rather we all had a good time, or as good as we can have. It was tricky for her to find the tumor (actually it's tricky for anyone but me to find it) so when she did, she took some measurements and made notes about the location.

From what we can see on the ultrasound, the tumor is 1.3 x 1.1 x 1.0 centimeters. Ultrasounds aren't always accurate, so that's a more-or-less measurement. But it does suggest something to me about the stage. If my lymph nodes turn out to be clear of any cancer cells, this would mean that I have stage I cancer (on a scale of I to IV) which is pretty good. Cancer stage is calculated by taking into account the size of the tumor and whether or not the tumor has spread beyond the primary site. (At www.breastcancer.org, you can find a complete description of breast cancer staging, if you're curious.)

Seeing the ultrasound was interesting because previously I've only seen an ultrasound for that fibroedenoma I had. A fibroedenoma often looks egg-shaped, like a brand new ovoid of Silly Putty. Cancer usually looks more irregular. This tumor had little parts reaching out, kind of like the shape of a person in a garbage bag reaching out, clumsily trying to infiltrate more area. It's all very curious, looking at cancer that is inside you.

After the ultrasound, we headed back home to fill out some paperwork. In a Margie-and-Norm inspired bit of timing, Kathy's employer just changed her medical insurance plan and extended coverage to domestic partners. Open enrollment, lucky me, is this week. As a self-employed person, the only medical insurance available to me was pretty much bottom of the barrel. They've been removing benefits and jacking up the costs ever since I signed up five years ago. At this point, I am slated to pay for 40% of my treatment, along with surcharges like $400 per surgery. Kathy's insurance offers much better coverage. Being added to her plan is likely to save us thousands this year, easily. Which just goes to show, even when things seem to really be going wrong, good things do happen!

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Today I had my 10 am appointment with the surgeon at the Breast Care Center. It took a while for them to find the films from yesterday's mammogram, so I had to wait. The only size of gown they have is way too small for me. Yesterday, in radiology, they told me that they ordered larger ones and didn't get them. The tech said, "I don't know, maybe UCSF hasn't paid their bill." Today I sat on the exam table, ineffectually trying to pull the edges together, waiting. They have you put on the gown with the opening in the front and let's just say that makes it look all the more embarrassing. With my breasts scrunched together and my cleavage exposed, I looked like some Renaissance Faire wench with a really bad costume.

When the surgeon came in, I shrugged and said, "All attempts to preserve my modesty will prove futile, so I'm giving up on this." I mean, really, I better get over it now.

The surgeon did a physical exam. She, too, had a hard time finding the lump. I guess when it is your lump it's easy to find, but it's not so obvious when it's on someone else. She gave me a binder of information on breast cancer, with tabs for the different topics on which they may later give you handouts (surgey, radiation, chemotherapy, etc.). I've nicknamed it my "You've Got Cancer!" binder, because that's what I think of whenever I see it. And, yeah, I say "you've got cancer" with that weird AOL voice from the old commercials.

Going over my options of mastectomy or lumpectomy, she pointed out that the survival rates are pretty close no matter which you choose. With a lumpectomy I would need 6-1/2 weeks of radiation. I'd already read up on this and knew I wanted a lumpectomy. Honestly, I pretty much wanted her to whip out a calendar and schedule the surgery on the spot, but that's not how it went.

This particular surgeon is nice, all smiles and encouragement. She we'll do the surgery, check my lymph nodes for cancer, I'll get the radiation, and I'll be just fine, nothing to worry about. I understand that she is trying to reassure me, but I'm funny about that. I get a little edgy when people tell me I'm fine before we have all the data. I suppose most people want to hear they have nothing to worry about. But in this kind of situation, I just want data. And data, of course, is what we don't yet have. We have questions.

She asked about my family history. Because the breast cancer history is so strong and there is a possible history of ovarian cancer, she wants me to see a genetic counselor right away. The genetic counselor will take the details of my family history as far back as I can give it (cancer-related) and possibly test me for BRCA-1 and BRCA-2 genetic mutations. The goal is to evaluate whether or not I'm at "extreme risk" for recurrence (for example, a 50% risk of getting cancer n the other breast) as well as at risk for ovarian cancer. The surgeon asked me to schedule with that department as soon as possible, as they would recommend a mastectomy (bi-lateral) if I was carrying a gene mutation. Oh, my!

My other breast is also of concern. The reason they did magnifications on that breast when I had the mammogram yesterday is because there is an area of micro-calcification, right in the area where I had the fibroedenoma removed. She said that sometimes there are pre-cancerous cells hiding out in calcifications. I don't think there's any cancer there, but funny, no one wants to take my word for it. She scheduled me for a core needle biopsy in the imaging department at 12:30.

And that was that. They scheduled me to come back next Wednesday and then Kathy and I pretty much just had time to head over to imaging for the biopsy.The tech from yesterday rushed me in back, had me change, and then sat me down in the waiting area to explain what they were about to do.

The thing, is, she was talking very softly so as not to have all the women sitting next to me hear, and as a result, I could barely hear her. She explained that this biopsy was guided by digital mammograms and used a thick needle that removed several tissue samples from my breast. I knew all this from the handout I had quickly skimmed, moments before, but sometimes she'd mutter something that I didn't catch, as she was speaking so low. When she whispered something followed by smacking her fist against her flat palm, and telling me "be sure not to move" I had to wonder what that was about!

She asked what I had eaten and I confessed that I hadn't had a bite to eat all day. That worried her, so she rushed me into a mammogram room and gave me a bagel and a bottle of water. While rattling off information about the biopsy and asking questions about what medications I had taken, she kept pausing to say, "Keep chewing! You need to eat now!"

A nurse then came to take me into the biopsy room. Now this was strange. They had me climb up on this big table that was covered in white cloths. It had a hole in the center of the table. The nurse said to position myself so that I could slip my right breast into the hole in the table. I couldn't help but feel like a milking cow at a corporate dairy! I had to lie in a specific position so that they could flatten my breast in a pair of digital mammogram paddles. One of the paddles has hole that they can insert the needle through (and then into my breast). They raise the table up high, then the nurse and a doctor move underneath the table to do the biopsy.

The idea is that with the paddles they can take digital mammograms, which are available instantly, helping them locate the exact area they need to biopsy. They position the paddle so that the hole lines up with the biopsy target. Once they are sure they have the right spot, then they punch the needle in to get tissue samples. (Apparently, that was what the tech meant with her first and her open palm!) More mammograms confirm that they are getting tissue from the precise location they want.

It's all fascinating technology in retrospect (and I think it's just a few years old) but it's really weird when you do it. Thank goodness there is lydocaine involved! The doctor who did my ultrasound was the one who did the biopsy. She was very good about making sure I was numb enough before beginning the procedure, and she kept checking in with me to make sure. The whole thing goes on for at least 45 minutes (maybe longer) and you have to stay very still, so I just imagined that I was a spy. If I moved at all, I was in danger of blowing my cover. No way was I moving!

Problem was, with all this talk of core samples, my mind started drifting to...the geologic core samples that so fascinated me when I was a kid. I recalled the educational movies where they'd show scientists extracting long tubes of muddy gray soil from the earth. Ooh, no, mind like water! Mind like water! Then my mind drifted to the X-Files, remembering Scully running while carrying core samples from the arctic. Was it an alien bounty hunter who was after her? Didn't she have cancer that season? Hmmm.

When it was all over, they held my breast in compression for a while, then had me press against it. The nurse and the doctor kept telling me what a great job I did, how I was amazing. I thought, "Do I get an A? Will my surgeon see the grade?" Then I thought about it more and wondered, "Hey, did I have an option NOT to be amazing? Could I have been, oh, screaming, instead?"

So, I'm bandaged up and have my list of what to do. Ice 15 minutes on 45 minutes off, if you listen to the nurse; 20 minutes on/20 minutes off if you listen to the doctor. Tylenol only; no Advil. For 48 hours, no exercise, no lifting, no baths.

At this point, I'm tired and I'm hurting. I really wanted to learn some answers today, but I came away with the opposite. I think I need to sleep.

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I've been spending the weekend reading up on the issue of genetic risk for breast cancer. This is about the BRCA1 and BRCA2 gene mutations that have been linked to a significant increase in breast cancer risk. For women who test positive for one of these gene mutations, their risk of contracting breast cancer in their lifetime can be as high as 85%. After getting breast cancer, the risk of later getting cancer in the other breast can be as high as 50%. In addition, BRCA1 and BRCA2 gene mutations are also linked to a heightened risk for ovarian cancer, as well as some other cancers.

It's all very serious stuff. It's serious enough that a number of doctors recommend that women who are BRCA1 or BRCA2 positive get prophylactic bilateral mastectomies (surgical removal of both breasts) to reduce their chances of getting breast cancer by about 95%. (It doesn't completely remove the risk because breast cancer can still develop in the chest wall.) Some doctors also recommend getting an oophorectomy (having the ovaries removed), too. Even when their doctor's don't make this suggestion, some women insist on these surgeries anyway.

I think I can understand why women might make these choices. First off, a lot of people are so afraid of getting cancer that they will do anything to prevent it. Finding out that they are at risk injects more anxiety into their lives, and that anxiety become very disruptive. Also, women who have these gene mutations usually come from families where breast cancer is common. That means they may well have watched loved ones suffer and die from this disease. Who can blame them for not wanting to go through that?

I support women who find preventative surgery to be the right choice for them. What I don't support, though, is pressuring other women to make the same choice. Bilateral mastectomy is not the only way to approach the issue of heightened risk. Some women choose to undergo aggressive surveillance instead, which may mean more frequent breast exams and mammograms or other screening tools. It's not so easy with the ovaries because it is difficult to detect ovarian cancer at early stages. But with breasts, it's different.

Yet, what I read online is women advising others with remarks like, "Your choice is a mastectomy now or a mastectomy later, with a side of chemo and radiation." Women refer breasts—not just their own—as ticking time bombs and question why anyone would have second thoughts about having them removed. They say they've already found their husbands and nursed their children, why not get rid of their breasts? After all, who needs them?

Well, crazy me, I want my breasts. I may not need them—I'm not raising children or trying to attract the attention of the men folk—but they are part of my body and I'm rather fond of keeping it intact. As far as I'm concerned, my breasts exist for my own pleasure. What on earth is wrong with having that influence my choice? Does it make me a bad feminist to be attached to my feminine body parts? Does this mean that if I tested positive and later had a recurrence, I would be held to blame? 

Although, honestly, I’m not easily influenced by what others think I should do with my body. What makes my heart hurt, though, is when I see vulnerable women turn to others for guidance after getting a positive test result and watch them being told that there is only one correct choice for them to make. Deep down inside, we must know that there is never one right decision. Each woman must find what fits for her. If we can't help each other sort through our experiences to find our own truths, then do we really know what being supportive looks like?

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Because I'm apparently twelve years old, the title of "genetics counselor" makes me giggle. I can't help but imagine myself sobbing against someone's shoulder, wailing, "Oh, why are my eyes green? Why couldn't they be blue like my brother and sister? Please tell me why I must shoulder this burden alone!"

Yeah, okay. Anyway.

I called the genetic counseling department this morning, to schedule an appointment. They were happy to set something up…for 9th…of MAY. That's five weeks away! I want to be done with surgery before then. I don’t mean to be impatient, but over a month away is not okay with me. After talking with the scheduler a bit and letting her know that the surgeon wanted this information soon, she decided to check with one of the counselors. Luckily, the genetic counselor said she could see me this Wednesday, before my appointment with the surgeon.

WHEW!

For all I know, my surgeon might have been fine waiting another month (I really don't know) but I wouldn't be.

The person who set up the appointment also faxed me a 22-page questionnaire that I need to fill out for the genetic counselor, so that she can evaluate my risk. It's a long questionnaire full of questions that are hard to answer.

Some of it's basic information. You know, contact info, my education, ethnicity, occupation, income (wait, is that genetic?), insurance, info on all my doctors, and so on. Then they want to know about my medical history in great detail, including my birth weight and length, current stats, my weight at age 18, whether my mother smoked or took DES, my history of medical problems, anything I took medication for (and how much and how long), surgeries, broken bones, past gastro-intestinal examinations and the result. But we're not even halfway through. They also ask about skin cancer risk, like how many moles I have, how many blistering sunburns before age 20, my UV tanning bed history and so on. They ask about alcohol consumption, smoking, drug use, coffee consumption, diet and exercise, mammograms, menstrual cycle, birth control, everywhere I've lived for 3 years or more and how much exposure I've had to known carcinogens like asphalt.

That's not the hard part, though. The challenge is the family history, because it's a case of "I don't know what I don't know." For each family member they want to know their full name, birth date, current age or age at death, year of death, cancer diagnosis (yes/no), cancer organ, and if female, what age their ovaries were removed if at all. Can you answer that for all of your relatives? Didn't think so!

To fill out the family history, I had to go through the records in my garage, call my aunt in Massachusetts to find out what she knew (that was nice; I haven't talked to her in years), and belatedly remember to check the data in my Family Tree Maker software. Being an organized person is very useful, but you would be surprised to find out how often I FORGET what I've organized. I found that the record I created in 1998 had notes about medical history for a number of relatives…something I only vaguely remember doing! It would have been handy to remember that a little earlier in the day.

So, at this point I just need one more piece of info and I'm done. On the request for pre-authorization form, I have to check whether my cancer is invasive or non-invasive, and no one mentioned that. I assume invasive because (1) that's more common (80%) and (2) they are going to check my lymph nodes for cancer, and why would they do that if it was contained? But I'll ask the surgeon on Wednesday, anyway.

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People tell me that it's great that I'm so good at research, especially given what I need to learn about my diagnosis and treatment, but the truth is that research can be dangerous. There are no custom filters to sift out the information you really don't want to read.

This afternoon I had a surfing accident when I pulled up a medical article about people with certain types of cancer. It described how some people, particularly those with breast or lung cancer, will survive their primary cancer, only to have it spread to their brain later on. One of the doctors quoted said that if he was diagnosed with one of these cancers, he would immediately demand to get a brain scan.

Ack! That's just what I need to worry about – the sudden appearance of brain tumors, right about the time when the birds start singing again and Spring has returned to the land. MY GOD, isn't there something I can install on my browser to make sure I don't see that crap? Some kind of TMI (too much information) filter? I see a product opportunity.

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I met with the genetic counselor today for about an hour and a half. She had the 22-page questionnaire I filled out and she had started drawing a genetic family tree. She asked me more questions and made notations. Based on my history, she said we certainly had cause to do genetic testing, but that she needed to talk to me before we went ahead. Not everyone truly wants to know their genetic status. In addition, they want to get an idea of how you think it might affect you if you found out you were a carrier.

I told her that I had done a lot of thinking about what I might do and I believed that if I was a gene carrier, I would decide to get my ovaries removed (oophorectomy) to reduce my ovarian cancer risk and do surveillance on my breasts (instead of getting a preventative bilateral mastectomy). Beyond that, I'd be concerned about my brother and sister and what it would mean to them.

After giving me more background on the genetic mutations and surgery designed for cancer prevention, she talked to me about my family. She wanted me to know how they would want to proceed with my family if I test as positive. Because UCSF is a teaching/research institution, I was enrolling in a genetic testing program. She said they would want to talk to my brother and sister and potentially test them for the mutation (because if I was positive, they would have a 50% chance of also carrying the mutation...and if they were positive, their kids would each have a 50% chance, so it would matter a lot to them). I was worried because for me they have to test the entire gene sequence for two genes, which costs $2800. I didn't want to put that kind of financial burden on my siblings. The counselor said that once they know my mutation, family members get tested for the specific mutation only, which is much, much cheaper. In addition, they have research scholarships that are available when needed.

She gave me forms to fill out to get medical records and other information for relatives who are no longer living. I still need to continue research to try to fill in the family tree some more on my mother's side. For example, there is a rumor that one great-great-aunt had breast cancer and her sister had ovarian cancer, but we need some documentation on that. I'm not sure how I will get everything they want, but we'll see.

I had my blood drawn for the test, donating an extra vial to research and banking another one for my family, in case they ever want to have it tested for something new. I felt really centered and like I knew what I was doing.

And then I went to see the surgeon...so much for feeling centered.

The surgeon came in with two residents following close at her heels. She told me that the biopsy I had done on Friday did not show cancer, but it showed atypical cells. Based on that, she wants to do a surgical biopsy on that breast to take a closer look. She asked if I saw the genetic counselor and I said yes, and I we took blood for the genetic test. The surgeon suggested we wait the five weeks it takes to get the results before we scheduled surgery, so that I'd have the option to choose preventative mastectomy if it is positive.

I said, "Actually, that's not what I plan to do if I'm positive." I told her my plan. She looked me in the eyes and said, "I want to be sure you understand that if you are a gene carrier, you have a 50% chance of getting breast cancer again." I told her I knew that, and I was prepared to do surveillance, but right now I wanted the lumpectomy as soon as possible.

There was an silence and suddenly I felt very uncomfortable. I got the message that I had made the wrong decision. After a moment, though, she brightened up, put on a smile, and said, "Well, even if we do the lumpectomy, that doesn't mean you can't get a mastectomy later on. In fact, we can take your ovaries at the same time!" She beamed a smile at me, clearly happy that she found a solution.

I replied, with a cynical drawl, "One fell swoop, eh?" One of the residents cheerfully offered, "One-stop shopping?"

Am I the only one horrified?

She scheduled me for surgery on April 21st. That will be for a lumpectomy on the left breast, a sentinel node biopsy on the same side, and a surgical biopsy on the right breast. Because it's difficult for her to feel the lump, she said they'd do a wire localization beforehand. That's where they insert a thin wire into the breast, to guide the surgeon to the exact spot. She'll have that done on both sides the morning of the surgery.

Just before she left the room, I asked her what kind of cancer it was, so I could fill out the lab form. She flashed me a bright smile and said, "Stage one, invasive cancer!" as she left the room. I almost expected her to add, "Buh-bye now!" and do a cheerful wave.

I came out of the appointment tense and unsettled. Kathy said, "Your surgeon is a surgeon. That's what she does. Of course she'll want to solve things with surgery." She's right.

Ultimately, though, this is my decision, and I have to follow my intuition whether or not it's unpopular. After all, none of us can know what will happen in the end.

Technorati Tags: Cancer Journey

When it comes to testing for known gene mutations that influence breast cancer, there's only one game in town…if you're in the U.S. That's Myriad Genetics Lab. They hold the patent not just on the BRCA-1 and BRCA-2 gene testing, but on the gene mutation sequences themselves! Did you know you could patent something that already existed? I didn't!

I say they're the only game in town in the US because in Europe, Myriad's patent (at least for one of the mutated gene sequences) was not held up in opposition. They won't acknowledge the patent, perhaps just because they have some sense, but also because they feel that allowing Myriad a monopoly on testing is a impediment to patient care.

So, the Europeans have developed their own testing for these mutations and it sounds like their methodology is actually better. You see, there are different kinds of errors that can occur in a gene sequence that results in a mutation. For example, part of the gene can be missing, it can be damaged, or everything can be present, only in the wrong order (a re-arrangement error). The Myriad test doesn't catch all re-arrangement errors, but it sounds like the European test does.

Does this matter? Well, a study came out just two weeks ago about for people from high-risk families are tested for BRCA1 and BRCA2 mutations, Myriad gives false negatives twelve percent of the time. That doesn't mean that 12% of the women who take the test and get a false negative are really positive. This just applies to women who come from families with a very strong history of breast cancer and who get a false negative.

But wait, Myriad can use this press release to their advantage! They just announced that, "Myriad is trying to improve its testing capabilities beyond the 5 most common sequences it presently looks for. Within the next 9 months the new test, BART PANEL, will be introduced to further screen those high risk mystery families. It will be a separate test and for those who have been tested prior, it will be an option, for a price which is unknown at this time."

Hmm, a price unknown. Okay, let me guess…that means…really, really expensive?

Sigh.

Technorati Tags: Cancer Journey

It's hard being stuck in limbo and in terms of my breast cancer journey, that's exactly where I am. I'm like the Tarot card "The Hanged Man," suspended upside-down. Waiting. It's going to be that way until after surgery when we find out the status of my lymph nodes (to see if the cancer has spread) and get the pathology report describing important attributes of the cancer.

I can't help but be aware of all the possible variables that could come into play. The best case is that this is a small, non-aggressive tumor and my lymph nodes are clear. That would mean six and a half weeks of radiation after my lumpectomy.

However, if the pathology shows an aggressive cancer, if the cancer has spread, or the Oncotype-DX shows a high chance of recurrence, I may need to undergo chemotherapy. If the cancer is Her-2/Neu positive, I may need a year of a systemic I.V. drug called Herceptin. And if the cancer has spread, I may need more surgery.

So, as you can see, there are a lot of unanswered questions that will dictate how my treatment proceeds. And yet, a lot of people, including my surgeon, insist on telling me that I will be just fine. They say that this will be no big deal, just surgery and radiation and then my life will return to normal. Just like that!

I know they intend this to reassure me, but their bright-eyed remarks have exactly the opposite effect. I get agitated. The more people tell me I'm fine, the more I want to shout, "Stop telling me I'm fine, we don't yet KNOW if I'm fine!"

I'm not try to be a Negative Nelly and it's not that I suspect bad news is to come. It's just that, for an analytical person like me, I can't help but suspect someone's judgment (or motives) when they reassure me without data. This is true especially if they are in a position of authority, like my surgeon. If you reassure me without knowing what you are talking about, I'm going to start thinking you aren't a credible source of information or comfort.

But maybe more than that, it makes me feel invalidated. I feel like I'm being patted on the head and told to run along. I expect to hear people add, "Don't worry your pretty little head about that cancer thing, we'll take care of it." Yeah, I think, let's see how you feel when it's your breast under the microscope. We'll see if you are comforted by mindless assurances that you are going to be fine.

Even though these comments drive me batty, I don't tell people how I feel. That's because I'm pretty sure I'll sound negative if I argue the matter of just how fine I actually am. (And hey, in some respects, I'm mighty fine!) Also, I can't help but wonder if some people are talking to themselves more than me. They want me to be fine. Do I really want to make them nervous?

Maybe I'm the only one who gets twitchy in a situation like this. I'd be curious to hear what others think. In the meantime, though, it's okay to just tell me you are thinking good thoughts for me.

Technorati Tags: Cancer Journey

My breast surgeon arranged for me to meet with a gynecologist today, one who works in partnership with the UCSF breast care center. Her concern was that if ovarian cancer might run in my family (I'm not sure) she wanted me to be screened. The gynecologist's office asked that I bring the results of my last PAP smear with me. Toward that end, I faxed a request for my medical records to my regular doctor's office last week, letting them know that I would come by this morning to pick them up and to call me if there were any problems.

You just know this didn't work out, don't you?

As I started driving into San Francisco, I called the medical records department to confirm that they records were ready. The person I spoke with indignantly exclaimed that they couldn't possibly provide me with those records on such short notice. They need several weeks advance notice.

Why then, did no one call me? Well, it turns out that they don't actually read the requests that are faxed to them. They give the faxes to a service that retrieves and copies the records and then mails them to the patient. No one looks over the nature of the request, reads the name of the doctor, nothing. I was shocked - what if this was urgent? How hard is it to say, "Sorry, we can't do this in this timeframe." Or tell me what I do need to do? AURGH!

When I explained that all I needed was the PAP smear results, they admitted that they could fax just that to my gynecologist. (And yes, I gave them the doctor's info in the fax that they didn't read.) I have no idea if they actually did that today, but they said they would. Whatever - I don't suppose it is urgent.

At the gynecologist's office, I waited in my gown, swinging my legs as they dangled from the exam table. It's never comfortable to sit on those tables. I tried unsuccessfully to distract myself from the rash on my leg. I've had this rash for a couple of weeks, but I've been so distracted by having breast cancer that I didn't really register how weird it was until I thought about seeing a gynecologist. You know, getting into a compromising position like that can make you suddenly very aware of everything from the waist down. Having a rash that runs in a straight line from the back of my knee to my buttock, looking for all the world like an insane spider ran along my skin biting me repeatedly, made me pretty self-conscious. She is bound to notice it. How do I explain that I'm not exactly sure when it showed up?

When the doctor started examining me, of course I had to call attention to the embarrassingly weird rash. It's my way. I showed her how I also had a similar rash on my arm, on the same side of my body. She agreed that it is very strange and asked me to see a dermatologist before my surgery. Hmmm, yeah, I am a mutant, just as I thought.

I must say, though, this doctor made an especially good impression on me. Of all the people I've met with so far on the breast cancer journey (outside of my PCP) she is the most compassionate and the most interested in my quality of life issues. She asked about what kind of emotional support I have, offering to refer me to someone who specializes in cancer patients. She also told me about an organization that she is part of, one that supplies funding to patients for complementary medicine, since it is often not covered by insurance.

Her questions were all thoughtful and she listened to my answers carefully. I felt calmed by this. She had a lot of information for me on hormonal treatment as it related to my issues and the genetic testing. I told her about my concern regarding the recent study showing false negative results for some patients who undergo BRCA1 and BRCA2 testing . It turns out that she part of ... oh, not sure what it's called, but the group within the Breast Care Center that deals with genetic testing issues, and she just came from a meeting discussing that study. Interesting stuff.

She wants me to get a pelvic ultrasound as soon as possible to screen for ovarian cancer and is also doing a blood draw to test levels of CA-125. I'm supposed to come back in six months, and if I go on Tamoxifen (anti-estrogen drug for premenopausal women) later, she'll help manage how I do on that. So, woo-hoo, more tests! Just what I wanted.

I think I'll go take a nap now.

Technorati Tags: Cancer Journey

For my lumpectomy pre-op appointments today, the first part was done in the hospital wing  while the second was done in the Breast Care Center, which is a more contemporary wing with hip-happening art and better lighting.

Before lunch, they took my blood and, um, other things, quizzed me about my health in preparation for anesthesia, and had me get a chest X-Ray. My blood pressure was very high, which is not surprising given how hospitals make my eyes dash about madly in an attempt to find the exit. Apparently, I appear calm and self-possessed, but my vital signs tell the truth about how I'm feeling.

While getting the chest X-ray, the technician (a young man) was marveling at my hair. Go figure! He was asking how I get it so shiny and silky. He didn't ask how I get it so purple, because I suppose that's obvious. I told him that I don't blow dry it and that helps a lot, but that I have a friend in South Dakota who says she can't avoid blow drying, or her hair will freeze in the winter. He thought that was the funniest thing he had heard in ages. I would say he was just flattering a half-naked woman, but I don't think I'm hot, so maybe he's just an easy laugh.

After finishing with the hospital part of things, I decided to leave UCSF and get lunch somewhere else, just to clear my mind. I went to Japan Center to get a sandwich and visit the Japanese bookstore. The smell of the incense wafting from the stores and the muffled conversations (in several languages) were very soothing. As a bonus, I scored some amazing movie magazines with Johnny Depp bonus photos inside. These are the kinds of things you will never see in U.S. magazines. I bought extra to mail to my friends who are fellow fans and that cheered me up a lot.

Back at UCSF, I met with the surgeon's nurse. I had left her a message last week letting her know that I was frustrated with a lack of information. I asked for copies of my pathology reports and to be shown my mammograms, which I had never seen. I have to say, this nurse is fabulous. She was ready with the reports, the films, and handouts. She went over everything in great detail. She has a tranquil presence which is welcome at times like these.

In the end, they really don't know much about the cancer until the pathology lab looks at the tumor sample. But at least now I know what they will be looking for and when I'll get results (May 3rd-also known as one million years from now). She explained that after the post-op appointment with the surgeon, they'll refer me to a medical oncologist for treatment.

She explained the sentinel node biopsy that they will be doing during the surgery. This is really cool, unless, like me, you look at photos of it online. Or you don't want to be radioactive. (I'm fine reading descriptions, but don't show me photos of surgery! Again, I'm wishing for a TMI (too much information) filter for my browser.)

Anyway, it used to be that during breast cancer surgery, surgeons would remove many lymph nodes (as in, dozens!) to examine for signs of cancer spread. These are the filtration devices that service breast tissue. They are located under the arm and when you have them removed, it's possible to get conditions like lymphedema that are no fun at all. Now they have a procedure that allows them to remove select lymph nodes only.

How it works is that shortly before surgery, they inject the tumor with a blue dye and a low-level radioactive tracer. This travels to the lymph node, called the sentinel node, which "services" that area. This is the lymph node most likely to contain cancer cells if the cancer is spreading. By removing that node (and maybe a couple of others nearby) and examining them under the microscope, the surgeon can make an informed decision about whether or not to remove more nodes. If the cancer is not in the sentinel nodes, they don't have to remove any more.

Supposedly, the radioactive tracer breaks down quickly. The blue dye sometimes stains the breast tissue and can be there for months, but only sometimes. Given all the troubles that my mother had after she had her lymph nodes removed as part of her radical mastectomy, I'm okay with being blue and glowing for a while if that gets me off the hook.

The nurse told me that the recovery is three to six weeks. Hmmm, I had planned two to three days. I can only assume the extra time is they have to take more lymph nodes. As it is, I'm willing to stretch it to 1-2 weeks. Maybe.

I asked why the form they mailed to me said that I should plan for an overnight stay. Thank goodness, she said that's just a precaution. If everything goes well and I feel up to it, I will get to go home that night. Honestly, I am willing to lie like a rug to get out a hospital, so I'm pretty sure I won't be staying overnight. I can just see myself slipping a $20 to the nurse so that she'll look the other way while I gather my clothes into a ball, chew off my wrist band, and bolt for the stairwell.

Did I mention that I don't like hospitals?

Meeting with the nurse made me feel more informed and, as it always works out, much calmer as a result. I didn't even scream when I had to pay $24 for parking. Now I'm in search of a top that "zips or buttons up the front" as well as a "bra without underwire." Fellow busty girls, are you laughing as hard as I am over that? We learn early on to avoid buttons and bras without underwire...well...I don't need to comment on that.

Technorati Tags: Cancer Journey

Today I received three bras via mail order, all without underwire. They are in different sizes because when you are super busty, you find out that the cup sizes are not consistent across brands. I don't have a good history with bras that don't have underwire. It's not that I like metal shoved up under my breasts, it's just that bras tend to fit me badly without it.

With some trepiditation, I struggled into the first bra. It both flattened and thrust out my breasts in an alarming way, making them look like flying saucers. This reminded me all too much of a bra I tried on 20 years ago, in an experience memorable enough to remain burned into my brain.

I had gone to a custom bra place where they said they made bras a different way. The fitting consultant, a bleached-blonde older woman who smoked like a chimney and bore the unlikely name of Chickie Downs (was she a stripper?) measured me and declared me an I cup. Yeah, I, as in, what comes after H. She said my problem was wearing bras that left too much breast tissue on the sides of my body and that what I needed was to bring all of that forward. Pulling out a strange torture-device-turned-bra, she told me to do the "milk shake" to shimmy into it and then spent several minutes gushing over how well it fit. Standing in front of the mirror in this huge, never-could-be-considered-remotely-sexy bra, with my breasts looking like the were about to fly off my chest in opposite directions and potentially hurt someone, I could only remain silent in my horror.

I think we can agree that any bra reminiscent of that one is not a keeper.

The second bra was "lacy," which really means uncomfortable. It looked like a restraining device for my entire upper body, only made of tacky white synthetic lace. The sides were four or five inches high and came up to the spot where I will soon be sporting an incision from the lymph node biopsy. That wouldn't do, so I tossed that in the return pile.

Finally, I tried on the third, and that one was just right. Made of a microfiber, it felt comfortable, didn't make me look like too much of a mutant, and came in the versatile color beige. Happy that I found one that fit, I took a look at the tag. Oh my god, it is an H cup!

I made a mental note of the product code on the good bra so that I could fill out the product exchange form for my returns. While I was running upstairs, I remembered the last two letters of the code-GL-by thinking of what my friend Maria would say if she saw the cup size..."Good Lord!"

In other news, I received a track suit in the mail that I ordered for surgery. Clearly, I should have read the product description more carefully before placing my order. Turns out it is 100% polyester! It looks like something they'd advertise cheerfully as having absolutely none of that nasty breatheability. I can here it now: "Who wants their fabric to breathe, anyway? Isn't that something you should be doing yourself?"

I didn't even have to open it up to find this out. Across the plastic wrapping are big letters reading: 100% POLYESTER MADE IN KENYA. Plastic? In Kenya? It makes me feel dirty, like I'm part of some conspiracy against Kenya, using my power as a spoiled American to make them develop a polyester industry. Ew. Too bad there is no return code like: "C-9 Offends me personally and/or politically."

P.S. I did a search on Kenya Polyester and found a PDF on Kenya's Apparel & Textile Industry 2005. "All the synthetic materials are imported. These include dyes and polyester (imported as granules), which has to be heated and then extruded into fine threads (filaments) for synthetic yarn production. The average annual imports of synthetic fibre for years between 1998 to 2002 is about 13,600 tonnes." Hmmm, I still feel dirty.

Technorati Tags: Cancer Journey I Crack Myself Up

This morning started, bright and early, registering for surgery at UCSF. The financial coordinator seemed very worried when she filled out the paperwork; it turned out that they didn't have my insurance update. My self-employment insurance is THAT BAD...people frown and shake their heads when they read the benefits! Well, good thing I now have new insurance, eh?

I first reported to Radiology to have the wires inserted into my breasts, to guide the surgeon to the tumor and biopsy locations. Lovely, I know. I bet you're wishing I would say more about it, in detail. It's your lucky day, because I will!

There was some confusion about whether they were supposed to do the wire localization in one breast or two. The order from the surgeon indicated just the right side biopsy. Previously she said she wanted both, and I know she had a hard time finding the lump in my left breast. Now, I'm not a big fan of having wires inserted into me, but I also didn't want my surgeon to spend a lot of time rooting around looking for a tumor. "Is it here? Maybe here? Over here?" Um, ew.

The radiologist reached the surgeon by cell phone. Because the surgeon was not in the office near her files, she wanted to make sure she was clear on the patient in questions. She said that the surgeon said, "Yes, I remember her, the young one."

I'm easily flattered. I grinned. "She called me the YOUNG one!"

They took me into the room where they do the core needle biopsy and had me do that whole routine with the weird table. They used this setup to insert the wire into my right breast. Thankfully, they numbed me for this. The doctor had trouble getting the right position for the left breast, so she decided to do this in another room guided by ultrasound instead, because my tumor just happens to show up better that way.

I know the doctors try to be comforting and reassuring, but luckily this one figured out quickly that I didn't need that, so we swapped funny stories while she did the second wire localization. She told me the most hysterical stories. I'd much rather laugh hard than have someone hold my hand; it's just how I am.

They rushed me in for mammograms, then developed the films and handed them to me. We were behind schedule and I was needed over at the hospital. They arranged for Nuclear Medicine to come to me and had me hang onto the films.

I was assigned a patient care coordinator who took me to my room to get ready for surgery. Now, everyone I dealt with today was wonderful...EXCEPT her. She spoke with an accent that was hard to follow, so I was straining to understand her. She was very impatient and condescending to me, and was downright rude to Kathy. She brought the pajama-like outfit I was supposed to change into with support socks, muttered some instructions, and left. I started to change into them when people started coming in to meet with me. A researcher had to have me sign a consent form for a study I was participating in and then the guy from Nuclear Medicine came in as I signed. I had absolutely no time to finish changing. The patient care coordinator came in, cast a disgusted look at me, and somehow decided that I didn't put the pajama bottoms and socks on because I was too big (what?!?). She grabbed them and walked out of the room!

Meanwhile, the guy from nuclear medicine had me lay down. We engaged in some polite chit-chat while he felt me up to find the lump. As yoy do. Then he opened a heavy duty metal case and took out a big syringe with the radioactive tracer in it. He injected it into the tumor, warning me that it might sting a little. I was quiet, though I thanked him as he left. Kathy looked at me and said, "I was watching your face. That really hurt, didn't it?" I nodded. Yowsah, that burned.

Next up was the anesthesia team, the resident who would be doing the surgery with my surgeon, a nurse, and some other people. At one point there were five people in the room all poking, prodding, and marking me. However, I must say that they were all very nice to me and to Kathy, too. I had always been afraid of having surgery under general anesthesia, but I didn't feel at all afraid today. I felt like I was being taken care of, and isn't that the best you can hope for?

The anesthesiologist was keen to understand how to properly start my CD player and put it on repeat so that I could listen to my relaxation CD the whole time. He injected me through the IV with something to calm me. They wheeled me into the operating room. My first thought was wow, there is so much equipment in there-it doesn't look anywhere near that crowded on TV! Then I don't remember anything else.

I woke up in recovery, freezing cold. I started shivering and couldn't stop. One of the nurses brought a heated blanket and gave me a shot of Demerol, then suddenly the shivering stopped. The resident had come by just as I awoke to tell me the good news -- my lymph nodes were clear! He came back a little later to see if I understood him, since I was groggy when he first spoke to me. That was sweet of him.

They moved me to a recovery room where I could sit up in a recliner-like chair. The nurse asked me if anyone was there for me. I told her Kathy was in the waiting area. Kathy came in looking very stressed out. It turns out that NO ONE TOLD HER how I was doing! She was waiting and waiting...they even closed the information station while she was still there...and no one came by. She was afraid something bad happened because by that time, I should have been out of surgery for HOURS already.

Recovery took a long time, even though I wanted to leave. I just felt awful for a while. I got a nasty migraine, but the nurse gave me ice to put at the base of my neck and somehow that helped. The surgeon came by and said that the surgery could not have gone better. She was really happy. She told me that she would call me with the pathology results if she gets them back before I see her next, on May 3rd.

The rules are that you can't leave until you...um...use the potty room, so I was drinking everything in site. I just wanted to go home. Once nature cooperated, Kathy got the car and they wheeled me out of there.

So, I'm home now. I'm hoarse and my throat hurts from the tube they put down me. I feel a little weird, but mostly okay. I promised to humor everyone and follow instructions for the first three days, including taking pain reliever. We'll see how it goes. The most important thing is that I'm with my kitties in our home and I did not have to stay overnight. Yay!

Technorati Tags: Cancer Journey

Whoever it was at the hospital who checked off "resume strenuous activity in 2 days" on the release instructions needs a talking to. I am wrecked. I'm not even allowed to take my first shower until tomorrow morning. What am I supposed to do? Go for a run immediately afterward?

As expected, I have three incisions; one on each breast one under my arm for the lymph node biopsy. They definitely hurt, but it turns out that Vicodin does a good job of relieving the pain. I was surprised at that, because Vicodin did little for my frozen shoulder and other pains I've had. I have never been much of a fan of that drug, but given that it's working now, I will take it.

The one thing it doesn't help, though, is the pain just above my tailbone. I agreed to be part of a study where they analyze the bone marrow of breast cancer patients and I think track us for 20 years. It's the kind of study where I don't get any benefit. They don't tell me anything or offer any treatment, but since I think it could help people down the road, I agreed to participate. They took a sample of my bone marrow during surgery and let me know that I might have some discomfort afterward. OW! This is "discomfort"? I have a hard time assuming a sitting position. Nothing really helps that pain, either.

Meanwhile, the cats have been very interested in me. Apparently, I smell funny. Since I got home from surgery, all four of them have been smelling my breath. I think they smell the anesthesia drugs. Finally, this afternoon all of them checked me out and decided I smelled normal again. Thanks, kitties. I guess that means I'm all better!

Technorati Tags: Cancer Journey

Last week I had to fill out a medical questionnaire for a new doctor. I swear, most of those questionnaires are designed to make me crazy. Am I the only one who reacts badly to the questions? Oh, I'm not talking about questions about my health history or personal thing. I'm talking about the basic info gathering that they usually put at the top!

My first issue is marital status. Now, you can probably predict that I'd have a problem with that because I'm a lesbian. At many offices, even today, the only options are single, married, divorced, and widowed. It's a complete heterosexual continuum (at least, as declared by the federal government) where there is no acknowledgment for other relationships. That alone would make me annoyed.

But it makes me crazy from heterosexual point of view, too, because the definitions don't make sense. Personally, if I get a divorce (and I have been divorced) I become single again. My forehead is not stamped with a capital D for the rest of my days, until I remarry. This is not 1945. And what about widowed? Someone's spouse dies and they have to forever check the "widowed" box to remind them of their loss? That's crazy. How archaic is this?

But that's not the part that makes me the most frustrated. It's educational level. You know, where you have to check things like high school graduate, associate degree, bachelor's degree, doctorate, etc. (Thank goodness not all doctors include this question.)

Education questions irritate me because I know the goal is to make assumptions about the patient's intellectual capacity. You know, so that the doctor can adjust the conversation to the right level. I will concede that, for the most part, this may work effectively. However, some of us are extraordinarily self-educated and cannot be properly assessed using this method.

Who cares, right? Well, I certainly didn't, until I realized that I wasn't getting the full story if I checked the wrong box. Most doctors could figure out my level of understanding after just a short conversation with me. But some just look at the boxes. Let's just say, I'm not the kind of person you want to withhold information from or talk down to, and once that starts happening, it's not good for anyone. (Close friends who read this are probably chuckling to themselves.)

Last year I met with an orthopedic surgeon who decided to write me off intellectually because I did not have a degree. He felt I couldn't understand any of the issues of my condition and he should make decisions for me. Given that our conversation started off with him grilling me about just what my answer of "some college" meant for educational level, I can be pretty sure it related to that. (Some college, by the way, means some college. Duh!) In this case, I never saw the surgeon again, but what about those times where you don't know what's really going on?

A few friends have said I should just check Ph.D and leave it at that. Which, by the way, is a great way to get off jury duty. Seriously, it's true. It turns out that on most juries, attorneys don't want people with high degrees because they believe they will have too much influence over the other jurors. That has little to do with medical questionnaires but it does go to show that we do a lot of judging in this world, all based on scraps of facts that don't necessarily add up to any truth. It's something to think about. 

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Recently, I found a statistic in the Beating Cancer with Nutrition book that said a breast cancer diagnosis takes 19 years off a woman's life. 19 years! It doesn't give any background for that calculation, which I assume is an average, it just throws it out there like a sizzling hot meteorite. Ouch!

Personally, I decided that I get to add two years to my life, just from being pissed off and ornery as a result of the diagnosis.

Survival and cure statistics are very frustrating to look at when you're diagnosed. Most stats seem to consider five to seven year relapse/survival rates. Five to seven years! Only a few look at ten years. I'm thinking, wait a second. What about fifteen years? Twenty years? I am only 40 years old!

A commercial keeps airing when I watch TV where breast cancer survivors state how long they've been a survivor. I find that hard to watch. I think I'm supposed to be excited about the chance of celebrating a two-year survival or ten-year survival.

Thing is, I've been thinking that living to 85 is not going to be enough time. How inspirational do I find it when people seem to suggest I should throw a party when I make it to 47?

I think there is only one solution to this: stop looking at statistics. Mute the TV. Remember that I'm an individual who hasn't lived in accordance with many statistics so far in life. Why would I start now?

And if anyone has a statistic to share with me right now, you might want to wait. I'm feeling cranky. Which is okay because, like I say, that adds two more years to my life.

Technorati Tags: Cancer Journey