Wednesday, September 30, 2009
And, the wait is not over.
The good news is the latest biopsy showed no cancer in the medial area.
The bad news is it did show Lobular Carcinoma in Situ in that area. Despite the scary name, LCIS is not cancer - it's a tumor marker. That means there is a slightly higher chance of developing cancer in that area, but normal treatment for this is to watch it and see what happens. And, most often, nothing does.
The good news is I may still be able to have a lumpectomy rather than a mastectomy.
The bad news is the word "may." That means more discussion. And, more waiting.
Dr. Raja is going to bring my case to a tumor board. Apparently, a tumor board consists of oncologists, radiation oncologists, and surgeons, all of whom have differing favorite treatments and who like to argue about difficult or intriguing cases. (Finally, something about me is called intriguing - and it's a tumor. Just my luck.)
I don't think I'm invited. I bet they won't even let me take the minutes.
I hate it when people talk behind my back. Especially when it's about my front.
4:59 pm. I just finished typing the above, and the phone rang. It was Dr. Raja. Apparently, the tumor board meeting was this morning. (See, I told you I wouldn't be invited. I make great coffee too!)
All of the doctors agreed that I would need a mastectomy, and not only that, as soon as possible. All 8 doctors agreed unanimously that it can't wait, that my cancer was too aggressive. And, Dr Raja mentioned to me that I was HER2+ and would need to start chemotherapy sooner rather than later, so he is going to try to find a plastic surgeon who will fit me in quickly.
There was an urgency in his voice I hadn't heard before. "as soon as possible" "we have to move quickly." "I'll find a plastic surgeon to fit you in immediately." "Call me first thing in the morning and we'll set it up." "Chemo as soon as possible." He's always been so soothing and comforting, assuring me I'd be fine.
His tone had changed. Seems strange to go from "you have plenty of time" to "it has to happen NOW" in one day.
Maybe he's tired. He did say it was a very active meeting.
Well, I have had plenty of time to adjust, so I'm okay. I've been expecting a fake boob and no hair and a year of chemo and infusions. (Sometimes 15 months with herception - ouch!)
But, I really want those meeting notes. I'd love to know what really happened in there. Did they fight about me? Did they think something was overlooked? Did they call me nuts for even trying to save my cancer soup girl?
Oh, to be a fly on the wall.
Tuesday, September 29, 2009
Now, before I tell you what they are, let me say to those of you who come across this site because you googled "Dr. Thiru Rajagopol, Sacramento Surgeon" - maybe because you've been been assigned to him by your insurance company and have no idea of his reputation, or maybe because you are researching surgeons because you can choose yourself - well, look no further. You can feel comfortable with him as your doctor.
Granted, he's not actually cut on me yet. If, after all of this, I end up with two whole breasts and a missing leg, I'll come back and edit this post and change my recommendation. So far (and this is a good thing), he has not lived up to the reputation of most surgeons: he's caring, willing to hear my views and take them into account, and he treats me like a competent adult, able to make decisions. Even though I don't have a medical degree. (Don't tell his colleagues that, he may get in trouble.) He
That, my friends, is dedication.
So, what did he call me about? I forget. Oh yeah, my latest biopsy results!
Does she get to keep the boob or not?
I'm so tempted to make this a cliff-hanger.
Maybe I will.
Monday, September 28, 2009
Take one MRI machine
Place patient face down with boob through hole
Apply mastectomy paddles
Turn machine on. Mix well.
Pull patient out.
Use vacuum extractor to remove meat
Add ice to patient.
Serve in two days.
The doctor repeatedly told me how well I was doing. She seemed sincerely impressed.
All I did was lie there. If they'd given me a pillow, I'd have fallen asleep.
How come in real life I don't get compliments for lying down? Wouldn't life be fabulous if I could lie down at work for an hour and have my boss come in and tell me what a good job I'm doing? I am a champion lyer-downer: I'd get raise after raise, and promotion after promotion. Pretty soon, I could go on the professional resting circuit and get famous. I could share my talent by lying on fabulous designer couches while entertaining George Clooney and Brad Pitt.
Sunday, September 27, 2009
I wonder how they know I caught it early? Do they have special powers to see through my body back to when that first cell mutated? "Ah ha! April 2nd, 2009, your normal cells just started dividing abnormally. Thank goodness you found it so quick!"
I should be flattered that all these people think I'm a responsible adult who got her regular mammograms, and thus naturally assumed that I found this cancer at the first possible moment.
They clearly have no idea who I really am: an unfocused, ADD-type person who will do just about anything to avoid discomfort, if she can even remember why she was supposed to be uncomfortable in the first place.
The fact is, it had been years since my last mammogram. In an earlier post, I explained my rationale for the delay, which still still seems quite reasonable to me. I also did not realize just how long it had actually been - I mean, I remember the last one like it was yesterday so in my unfocused mind, it had been pretty recent. Of course, I'd do things differently now, given the power to see into the future. Although, even with those powers, I'd probably get distracted by something else and forget to go.
Oh look! A bird!
The point is, that sucker could have been dividing for many years. Most breast cancers have been growing for two to five years before they are found. In breast cancer years - based on size - mine's a teenager ready for keys to the car, and not an infant cuddled under the blankets.
"At least you caught it early." I'm not quite sure how to respond to that comment.
I don't think I caught it early. But, I am hoping I caught it early enough.
Saturday, September 26, 2009
Not only do I need a lot of sleep, I need to sleep at the right time. I'm a picky sleeper. Morning sleeping is the best - mornings awake are not for me. I hate everything about early mornings - the way the light looks, the voices of people, my cat who wants to be on my lap, my family. (DON'T TALK TO ME! GET OFF MY LAP!!!) The only thing I can stand is coffee, without which I would not get up. Period.
On weekends and summers, I stay up until 1:00 to 2:00 a.m. (watching Sex and the City, damn I love that show - hey! Didn't Samantha have breast cancer? I'll have to check into those episodes, I'm sure she looked fabulous). The next day, I sleep until 11:00.
When I took my job as school secretary, knowing I was going to have to be at work at the stomach-wrenching hour of 7:00 a.m. and leave the house at the god-awful hour of 6:30 and get up at the horrifying hour of 5:00 a.m. (which honestly should be illegal) I tried to change my body clock. I bought a 10k lumen light and sat in front of it for 30 minutes a day; I took melatonin, used one of those wake up watches, etc.
It didn't work. I was still in a fog in the mornings. So, my habit was to come home from work and take a 30 minute nap. That's all I needed, and then I felt fine. I'd lie on the couch and doze off, then get up, make dinner, clean house, help the kid with homework, etc. I ran errands, went to the store, did laundry and picked out clothes for the next day, and generally did everything necessary to function in life. I didn't even need a nap every day, just once in a while - a little refresher.
Things have changed. Now, all I want to do is sleep. I do get up and go to work because I have to. But, I am exhausted all day. I look at the space under my desk longingly, knowing it would make a fine place to slumber. Friday, I even went over to the area that used to be the nurses office (there are no school nurses anymore) and lied down on the old cot, just for five minutes. Kids came and went, phones rang, teachers joked - and none of it mattered. I was going to fall asleep. Hard. Realizing I might fall sleep for, oh, the rest of my work day and beyond, I wearily got up again and went back to my desk.
Every day now I come home from work and sleep - for hours. In bed. I'm asleep by 4:00 and usually sleep until 6:00 to 6:30 and I only wake up because my husband wakes me when he gets home. Then I go back to bed at 10:30. 10:30! Like an infant! Weekends are no different. I get up at 11:00 and need a nap by 3:00, and when I say nap I mean I need to sleep four more hours. I am posting to this blog and I check the breast cancer forums but even that is all I can do. I'm not doing much else online or anywhere else.
People were thinking my near hibernation is an emotional reaction, but if you have read this blog from the beginning, you know I'm not really having that kind of emotional reaction. I'm an "it is what is is" kind of person and kind of dumb about worrying about the future. (People who have lots of thoughts about their future don't usually end up as bartenders/secretaries). So, I'm pretty sanguine about this. If I end up stage four, that may change, but right now I feel like I'm curable and it'll all be okay. Unpleasant, but okay.
I always felt that my extreme tiredness was due to my body fighting off cancer.
A couple of people on the breast cancer forums reported the same thing, but most who complain of tiredness are in treatment already. Most find a lump, get diagnosed and start treatment within a few weeks - and most have a smaller, less aggressive form of cancer. But, since my family has been understanding (my husband has taken over the cooking and my A student doesn't really need my help with homework) I didn't feel the reasons for my debilitation were important enough to explore.
Actually, I'm too tired to think about it.
But, last night the feeling that this is part of the illness and not stress was confirmed by a movie we watched: Living Proof.
Living Proof, in case you missed this stunningly well-acted and filmed movie (I joke) is about the path of Herceptin's approval though the FDA. It's a made for lifetime movie starring Harry Connick Jr, which should tell you all you need to know about it. The script was so bad I was reciting lines before the actors said them - and I'd never seen this movie before.
I could write this shit!
But, the topic was interesting to me since I'm HER 2+ and I will be taknig Herceptin. And, did you know ten years ago my kind of cancer would have been a death sentence? Herceptin changed all that. Now I have the same chance as anybody else with cancer, so it really is a miracle drug. Had it a good script and decent actors, it might have been a compelling story.
Back to sleep: One of the characters in the movie had difficulty staying awake. This was before she was diagnosed. Her family thought she was so tired because she had two little boys to take care of. She was HER 2+ too. She is the first person who ever got Herceptin. Her first cancer symptom was fatigue.
So, there is my proof. A bad Lifetime movie confirmed it. I'm tired because my body is fighting this cancer. It's not stress and it's not my imagination.
There's not a lot about exhaustion before you begin treatment online, but I found this on a website, "In a tumor-induced “hypermetabolic” state, tumor cells compete for nutrients, often at the expense of the normal cells' growth. In addition to fatigue, weight loss and decreased appetite are common effects."
I do have a fast growing, high nuclear grade, aggressive tumor so this makes sense. And, I did lose three pounds, although my appetitie is fine.
That coconut cupcake I had for my afternoon snack was delicious.
But, if I get more tired during my treatments, as everybody suggests, I'm going to end up in a coma.
Wake me in the spring.
Friday, September 25, 2009
"Uh oh," I thought. "This can't be good."
I went inside, dropped my keys and let the dogs out. All the time, I'm wondering if I'm going to be cancelled for having acne? Would Obama have to talk about me at his next press conference?
"There is a Sacramento woman, Ann Silberman, who had breast cancer. She was about to start her treatment, when her private insurance company dropped her over an unreported hang nail. Left with no choice, she performed emergency surgery on herself to remove the cancer. She was subsequently arrested for illegally disposing of medical waste, and died in prison after an unfortunate shanking incident. That's why we need a national healthcare system. We want to make breast cancer care as efficient as riding Amtrak, and as fiscally-effective as the Postal Service".
Quivering, I opened the letter. And here, in part, is what it said,
Today's economy is stressful. Taking care of yourself may fall to the bottom of your "To Do" list. Staying healthy is still important. We want to help
That's why we are sending you this friendly reminder to see your doctor for an important preventative screening. Prevention is the best way to keep from getting sick or to find some diseases early, when they are easier to treat. It's one of the best things you can do to protect your health.
It's important for you to get screened for Breast Cancer (mammogram every two years; clinical breast exam every year.)
Our prevention tips are based on nationally recognized guidelines. For questions about preventative health benefits, call the Member Services number on the back of your ID card.
Hokay. I'll get right on that.
Thursday, September 24, 2009
Dr. Raja said he'd set me up for the MRI-guided core biopsy already - Monday at 7:00 am. (7:00 freaking a.m? Really?) Whatever the results showed, it would be time to schedule surgery. If the other suspicious areas are not cancer - lumpectomy. If there is cancer in the other area - mastectomy.
He asked if I was fine with that.
How is that for a loaded question? It's like asking, "Have you stopped beating your wife?"
Am I fine with it? Absolutely not. I'm not "fine" with any of it.
Will I do it?
I have no choice.
Just like I knew I had cancer once I was turned away from the regular mammogram, now I'm thinking this is not going to turn out any way but me losing my breast. And, that is a two to three week recovery period, possibly more due to the reconstruction. Chemo will start one month after surgery, and that is a four to six month process.
So, I contacted our HR analyst today. No point putting it off anymore. I explained what's going on and asked to know what my options are. We set up a meeting on Monday after my testing (forgetting how much I bled last time, maybe I was hasty.)
One pleasant surprise - our district gives you a 90 day extended leave - with pay - for a serious illness. And, it can be taken intermittently, so if I have a bad week with chemo and then a good one, I can still use it. (Although, that is going to be hard on my coworkers). That is in addition to the FMLA, which is three months off, no pay. I also have about 25 days of sick leave and I donated to the catastrophic leave bank, so people can donate time to me if necessary. So, I should be able to recover and go through chemo without losing much, if any, money. And, I'm in no danger of losing my job.
That's something, anyway.
Wednesday, September 23, 2009
Remember Steve Martin in Little Shop of Horrors? He was my first dentist. For years, I walked around with one of those horrifying looking and extremely painful headgear creations that are sadistically rooted into your skull. To this day, I can feel the pain from that piece of tormenting architecture - long after I've forgotten the pain of childbirth.
And, no dentist since the first has been any better. In fact, one married and then cheated on one of my loved ones. No surprise there, considering they have evil in their souls.
Despite my last DDS (Demonic Dental Sadist) who believed digging into vulnerable nerve endings and sensitive teeth while your sinuses are clogged and your throat is closed is the height of enjoyment, I still went. I'm a responsible adult, after all. Not every six months, like they request in order to
And, without valium, I might add. Not that I didn't try to get some.
My final straw with these demons from hell was when I needed a root canal and my wisdom teeth out. I showed up on time and was delighted that this time I would be put under anesthesia. Finally! A dental experience I could enjoy.
I woke up after the procedure, only to be told there had been a complication, and that my sinus had been punctured. I got an immediate sinus infection, and a few days later began to cough. And cough. And cough some more. I ended up in the hospital with bacterial pneumonia. I was hospitalized for a week, on an antibiotic IV drip. I had a collapsed lung and an infection so bad it had spread to my kidneys and bladder. Naturally, it was caused by dental treatment . The infected tooth and punctured sinus leaked bacteria bugs down into my lungs and almost killed me.
And, if you think Steve Martin didn't get a thrill out of that, you need to think again.
So, I gave up. I stopped going. I ignored dentists. I flossed, I bought fancy expensive electric toothbrushes. I did everything I was supposed to, but go to a dentist. Two years went by. Three. I began to realize that this probably wasn't smart, so I'd make an appointment.
By now, I had a full-fledged phobia.
Guess what I found out? If you have chemotherapy with gum disease and bad teeth, it can make you sick. Those bacteria that just slowly eat away at your gums until your teeth drop out when you are 70 can actually kill you when you have no immune system.
So, today, I called the devil. I found a "sedation dentist" and explained I'll be facing chemo in November and need to get everything done at once. They fit me in for October 1st. I guess I'll do a little whitening too, as my reward for undergoing horrendous torture. If I'm going to lose my hair, I should at least have white teeth.
I'm way more nervous about this than anything else.
Cancer sucks. It made me go to the dentist.
Tuesday, September 22, 2009
Apparently, there is a right way to do cancer and a wrong way, and I've been messing up. How was I supposed to know? Nobody signed me up for the "how to do cancer correctly" class. You can't really blame me, I haven't been to the cancer re-education camp yet!
I know one cancer patient who gets in an irritated huff if you mention you have cancer before you start treatment - apparently your discomfort only counts once chemo begins. I guess having a life-threatening illness, exhaustion and pain, invasive tests every other week, and the looming amputation of one of your body parts isn't quite enough - nope, according to her, you have to lose your hair before you get to be a legitimate cancer sufferer.
Another thinks it's "disturbing" that one might - oh - maybe joke about it. Cancer is serious business, after all - nothing funny about it. "How dare you laugh, don't you know people are dying of this disease? I know lots of cancer patients and they never joke!" (If you are one of these humorless people whose hackles raise at cancer jokes then I suggest you turn away from this blog immediately and never, ever come back.)
Question: "What do you call a young woman who keeps getting lymphoma over and over again?"
Answer: "A lymphomaniac."
You might wonder why anybody else could possibly be disturbed by an experience and reaction somebody else is having that doesn't impact them at all, but then - you are probably emotionally healthy.
Hey, I am not sure I understand the women who get this diagnosis and cry for weeks, or become depressed, or can't face the truth, or turn to cookies or prayer, but I certainly don't think that my reality is superior to theirs. We're all in this together, baby, whatever gets you through the day.
But then, I have not been awarded the Cancer Police badge and gun yet. Maybe I'll change when I put the belt on.
(Do I get that after chemo or surgery?)
My naivety never fails to surprise me. I suppose I should have known there are the cancer police. After all, there are the Thought Police, the Green Police, the Politically Correct Police, the Food Police, the Exercise Police, the Weight Police, the Joke Police, the Parenting Police ...well, you can name your own, I'm sure. They all think they can do something better than you can and are out to teach you a lesson.
In this case, I hope they don't get the chance.
Then there are those who are less interested in teaching you to handle your cancer to their satisfaction, and more interested in your physical health. And, they think they know just how to cure you.
Oddly enough, it usually doesn't involve chemotherapy or surgery.
Or an M.D.
Today, I received the below email in my work inbox. In the note preceding it, I was told that it was from Johns Hopkins and had new information about how to cure cancer. A friend of the sender who was a cancer patient found it very helpful in her "battle."
I figure the best way for me to battle this cancer now would be the winning lottery numbers, but I read on. But, not for more than a paragraph or two, and I suggest that you skip it too, once you get the gist.
CANCER UPDATE FROM JOHN HOPKINS HOSPITAL, US - PLEASE READ
1. Every person has cancer cells in the body. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size.
2. Cancer cells occur between 6 to more than
3. When the person's immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors.
4. When a person has cancer it indicates the person has multiple nutritional deficiencies. These could be due to genetic, environmental, food and lifestyle factors.
5. To overcome the multiple nutritional deficiencies, changing diet and including supplements will strengthen the immune system.
6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastro-intestinal tract etc, and can cause organ damage, like liver, kidneys, heart, lungs etc.
7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs.
8. Initial treatment with chemotherapy and radiation will often reduce tumor size. However prolonged use of chemotherapy and radiation do not result in more tumor destruction.
9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications.
10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.
11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply.
CANCER CELLS FEED ON:
a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Sugar substitutes like NutraSweet, Equal,Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in color. Better alternative is Bragg's aminos or sea salt.
b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus. By cutting off milk and substituting with unsweetened soya milk cancer cells are being starved.
c. Cancer cells thrive in an acid environment. A meat-based diet is acidic and it is best to eat fish, and a little chicken rather than beef or pork. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer.
d. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within
e. Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer-fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it.
12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines become putrefied and leads to more toxic buildup.
13. Cancer cell walls have a tough protein covering. By refraining from or eating less meat it frees more enzymes to attack the protein walls of cancer cells and allows the body's killer cells to destroy the cancer cells.
14. Some supplements build up the immune system (IP6,
15. Cancer is a disease of the mind, body, and spirit. A proactive and positive spirit will help the cancer warrior be a survivor. Anger, unforgiveness and bitterness put the body into a stressful and acidic environment. Learn to have a loving and forgiving spirit. Learn to relax and enjoy life.
16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.
So, after skimming that I realized it was just another hoax - I mean, I think it told me to give up chocolate - so I deleted it. I didn't respond to the person who sent it, more because I had an extremely busy day at work than for any other reason. But, a couple hours later I got an email from the sender, asking if I'd read it and what I'd thought?
This time I responded. I thanked her for thinking of me, and that I really appreciated the sentiment and her caring. But, I said that I trusted my doctors, and that chemotherapy and radiation is why the cancer cure rate is much higher than it ever has been; that this was not from Johns Hopkins, and I pointed her to the Snopes article debunking it. I told her a life without chocolate and coffee was not a life worth living, but I was grateful she'd been thinking of me.
And, it's true. Even though she is misguided in her attempts to give me healing advice, her intentions were good. I'm an atheist too, but I do appreciate those who pray for me. I'm not a toucher, but I am thankful for those who have hugged me. I appreciate those who have brought me little trinkets to brighten my day, to those who ask how I am and let me answer, and to those who will let me share my concerns - and I am especially grateful to those who will listen to my jokes.
The good, caring people are everywhere, even when they send you silly emails. They far out number the cancer police, who only want to examine our flaws so they can feel better about themselves. So, to those of you newly diagnosed - run from the police types and concentrate on the people who show their concern, even if it isn't exactly your style. You'll be the healthier for it.
Monday, September 21, 2009
Because Leslie and I are so close, I felt comfortable whining about the difficulty I'm having in making a proper decision about my health, and I asked if she could have Dr. Raja call me back. She said he was in surgery but he would probably call in, and she'd be happy to pass a message along. Being as close as we are, I could tell she was hesitant about it - she wasn't sure what message to pass along. You know how you can just read your friends minds, even over the phone?
So, I confessed, as you only would to your closest friend (or online in a blog) that this cancer has gotten bigger since I first found it, and what used to be a light burning feeling is now a deep ache, and I felt that it's time to do something and pretty fast. But what, I ask? I confide that I need help making that decision. I shared that my recent MRI results had suggested that a new test, an MRI-guided core biopsy, might be appropriate, and I wanted to discuss with Dr. Raja. She says, like all good friends do, that she totally understands.
It wouldn't be a conversation between girlfriends without a little bitching, so I complained that I'd called the oncologist, Dr. Blair, on Friday morning and he'd still not called me back.
Clearly, nobody in that office wants to be my BFF.
She sympathized, then we hung up and I went back to work, having enjoyed a nice little break.
As all good girlfriends do, Leslie called right me back. She'd talked to Dr. Raja and he said I should have that MRI-guided core biopsy.
(I pictured him picking up the phone to call his office during a surgery - amputated breasts in buckets, him having to ask the nurse to dial for him due to his bloody gloves, nude and breastless patients unconscious in front of him. Kind of like Dexter but he gets paid a lot more.)
Leslie is going to set it up. What would I do without her? I hope she likes to shoe shop.
So, here we are again. Another test. Another wait.
Another opportunity to be annoyed by daytime TV.
This is the final one though. I have to make a decision after this. At least it will be as informed as it gets. I think, after this test, we should know exactly how far the cancer is in my breast, and if I get to keep it.
Or not. Maybe there are more tests ahead of me. I had a mammogram and a sonogram and a stereotactic biopsy, and an ultrasound-guided core biopsy and an MRI, and now an MRI-guided core biopsy - maybe there is an sonogram-guided mammogram stereotactic biopsy as well.
I'll have to call my BFF and ask.
Sunday, September 20, 2009
Thursday, September 10th was my 15th wedding anniversary. My saintly husband surprised me with a lovely diamond ring. It was particularly meaningful because it was a three stone diamond in a unity setting - one of those "past, present, and future" rings. Whether you buy into the marketing hype or not, that is now the meaning of the three stone setting for most people, including my husband. I know he wanted to give me something lovely to show he loved me and to demonstrate he believed we would, indeed, have a future together.
Here's the ring:
You can't really see it in that picture but the setting is white gold intertwining the diamonds which makes the past, present, future even more meaningful.
All girls love diamonds but I also was touched by the hopeful symbolism.
We were going out to dinner on Saturday to celebrate and I wanted to wear my ring. We all know what this treatment is going to do to my physical appearance and energy level (which has already declined dramatically), and I was feeling that this was my last time to go out with my husband, looking like me, being alone with him in a restaurant as a "whole" woman without physical problems. Wearing the ring before I began treatment and got sick was important to me.
I'm a girl, we get stupid about stuff like that.
The place he purchased the ring (Fred Meyer) is located in Arden Fair mall, where it's hard to park and often crowded on Friday nights and weekends. They told my husband that resizing it would take a week. Given that I was too tired and in pain on Friday to brave the crowds to drop it off, and knowing that I wouldn't be able to wear it for our big night out if I did take it there, I decided to go elsewhere.
My greatest failing in life is impatience, and I really didn't want to wait a week for Fred Meyer to do the work: it was important to me that I get to wear that ring once, at my best and healthiest. It wasn't only important to me - my husband wanted me to wear it too and have that memory.
So, I went to a small, one man shop located in Country Club Plaza to get it resized. That's a dying mall, always empty, maybe only ten stores left in it. Gottshalks was an anchor store and had closed down, and every other store near them had also folded. Only one remained: Pete's Jewelry Repair.
A year ago I'd taken a simple ring to Pete's Jewelry Repair inside the mall for resizing, and been happy with the results. He also has a "while you wait" policy, which meant I could wear the ring out to our anniversaary dinner. The mall is very close to my house so no parking problems or lengthy wait. Off I went.
Pete has a quirky personality. I remember a year ago he discussed these little airplanes and things he likes to make out of gold. He describes himself as a jewelry artist, so I felt confident he could size this ring.
I walked in to the empty store and asked him if he could size it right then, and he looked at it and said, "Sure." I asked him how much it would cost, and he said "$100.00."
Well, I had to think about that - did I really want the ring that bad? I really am impatient, but not completely stupid, so I was about to say "sorry" and leave when he said, "Just kidding, it'll be $20.00."
I give the go ahead, and sit down on a stool in his shop. He begins the resizing process, and I asked him if he could make rings larger too. I have a ring I am currently wearing on the finger I plan to wear the new ring, and I thought maybe I could put it on my index finger. Again, he says "sure" so I ask if he can use the gold from the ring he is resizing, and he said no. But then he handed me the gold.
I guess he thought I was asking for the gold? Last time I'd been there he had not given me the gold, and it never occurred to me to ask. This ring was a 7 1/2 and I'm going down to a 4 so it was a quarter inch piece of gold.
I tucked it in my purse and we sat there and chatted a bit. He asked me if I meditate. Now, this might come as a shock to those of you who live in the midwest, but not all Californians meditate. Not even those with cancer. So, I tell him no, but I admire the fact that he did. He told me I should and then pulled out his cell phone and showed me a picture of the sea and some chairs that looked like a Corona commercial, and said that this is where he "goes" when he meditates.
I make some noise about how nice that is and maybe I should try it, and then I browse some catalogs so he can concentrate. Suddenly I hear him say, "Uh oh. Your stones just came out, I'll need to reset it. It will take another day."
I was disappointed but still trusting. I told him fine, but I really wanted to wear it the next night as I had a special event, and was he sure it would be ready?
He said, "Oh yes, I'll come in early just to be certain. Come back at 4:00"
He gave me a claim check, and I left.
The next day I went back promptly at 4:00. Pete looked up when I came in and asked how he could help me.
Puzzled, I told him I had the three stone diamond ring and it was supposed to be ready now. I can't imagine that he couldn't remember who I was from one day to the next - there hadn't been a customer in the store the entire time, and I had sat there for maybe 30 minutes. But, he made me pull my claim check out, which I did. Then he said,
"Oh, your stones fell out when I was trying to resize it, and I need to reset it. I need more time."
He pointed at the ring, which sat in the exact same place on his table that he'd left it yesterday.
Confused, I told him I know that, I'd been sitting right there; it had happened in front of me, and that it was supposed to be ready at 4:00.
He seemed surprised that he'd told me 4:00 and said harshly, "well, it's not ready, you'll have to come back tomorrow."
His tone surprised me and I got upset. "That's not acceptable. I told you that I had a special event tonight that I was going to wear it for, and you said it would be ready by now."
He looked at me, and then said, "Okay, come back at 5:00 and it'll be done."
Our reservations were at 7:00. I wasn't dressed, and it takes 30 minutes to get downtown, so I needed to be ready by 6:30. Sadly, the older I get the longer it takes me to get presentable, especially when I have to wash and dry my hair, so I was concerned about the shortened time, but what else can I do? I accepted. I did say, "You are sure it will be done by 5:00, right?" I knew I couldn't wait until 6:00 and get ready.
He said yes.
So, I walk down the mall to Macy's and walk around. It was a cool night, and I figured I might find a sweater. My friends had bought me some hot shoes I'd posted about before, and I also wanted to wear those shoes as a symbol of their caring about me. I was wearing them with a LBD and didn't have a sweater to match. I did find one, on sale too, only $9.00, so I went back early about 4:45. I figured I'd wait with Pete.
And, the store was shuttered and dark. He'd left.
If he couldn't do it, all he had to do was apologize and say it was impossible, the job was more complicated than he'd originally thought, and would take longer than an hour. But, he didn't say anything like that, he told me to come back in an hour and then closed up shop. A jeweler did that! Somebody who handles expensive and sentimental items and is automatically in a position of trust.
Because of that behavior, first pretending not to know me and then lying to me about when it would be done, I got extremely concerned. I went home and called the mall management to complain but nobody was there.
My husband was in shock too, and it was then that I realized I'd probably made a huge mistake. I asked my husband to show me the paperwork from the purchase and yep, I'd violated any warranty by taking it there to be resized. That had never even occurred to me.
I blew it.
There was nothing to do but get dressed and go out to dinner. And, we had a nice time, but I have to tell you, talking about cancer and somebody maybe stealing our ring really did kind of put a damper on our nice time. We decided that the next day, we'd get the ring in whatever condition it was in and have Fred Meyer resize it and beg forgiveness and pay whatever they were going to charge. Which, I imagined would now be $100.00, like Pete had first quoted me.
Pete's behavior had been so strange - pretending he didn't know me, shutting down his shop, that I didn't want to go alone to get the ring, so I took my husband and oldest son. Plus, I was pretty angry and I wanted them as a calming presence.
I went in and two women walked in behind me, and I demanded my ring immediately. He was chatting on a cell phone and continued to laugh and chat, completely ignoring me. I told him to get off the phone, that I wanted my ring NOW. He looked at me, talked to his friend for another 30 seconds, and then got off the phone. He handed me my ring in a little plastic baggy, and it looked completely wrecked to me. Up near where the diamonds are was all melted. Here is a photo:
I told him with quite a bit of disdain, that telling me the ring would be done in 45 minutes and then closing up shop was a slimeball move, and if he had damaged this ring in anyway I would be asking him to pay. The only words he said to me was, "I'm not arguing with you." but he wasn't saying it in an appeasing way, it was more in a get the hell out of my store way. I reminded him he hadn't argued with me yesterday either - he'd told me to come back and get the ring and then locked his shop and if that's the kind of way he runs his store it was the most unprofessional thing I'd ever seen. I turned to the women who had come in behind me and warned them not to leave anything valuable.
Then we left.
I explained what happened to the Assistant Manager at Fred Meyer. She took one look at it and said that she'd never seen anything like that before. The jeweler wasn't there, so she would have him look at it and give me a call the next day.
As promised, the next day, the jeweler called and told me that it was the worst hack job he'd ever seen. The ring was completely destroyed and the diamonds would have to be put in a new setting entirely. He had also checked with another jeweler for a second opinion, and that jeweler agreed. Apparently, the gold had been melted to 1600 degrees.
Get ready for the next statement: $1036.00 for the new setting! I wanted to cry and trust me, I'm no crier. I told them I would have to try and get it out of the jeweler who wrecked it since we couldn't afford that, and probably through small claims. A few hours later the manager called me back, and offered me a "special accommodation" price to encourage the jeweler to pay me. He would charge cost, $691.00, if the guy would pay cash up front. If we had to put it on our card and then sue to retrieve it, then it was back to the thousand dollar price, which is what they would charge off the street. They did fax me a letter saying it had been destroyed and by the jeweler, Petru Colfescu, and that's all I need for court.
We decided to take the letter to Pete and see if he would pay, but he has shut down his store due to the "flu" according to a note on the door.
After four days of his store being closed, I found his home address and we sent a demand letter, certified mail.
I'm quite certain that any guy who would tell a customer to come back in 45 minutes and then lock up and disappear once she rounds the corner has no desire to pay for damages he caused, so we'll almost certainly have to take him to court.
And, by that time, I'll undergoing chemo and bald. I can't imagine facing a judge and a roomful of people looking like that, if I even have the energy and health to do so. It's one thing to be like that among friends and family who know what you are going through. Going to court like that and standing up and speaking - in my mind - would be awful. Pity is something I will never, ever accept.
Could the timing be any worse?
All my husband wanted to do was give me something beautiful that symbolized our life together and our hope for a future - and this guy has to ruin it.
Unfortunately, you can't sue for that.
Friday, September 18, 2009
Here is what it says:
(Lord help me trying to type this out)
TECHNIQUE: Bilateral breast MRI was performed using the following technique: Sagittal 2D FSE fat sat, VIBRANT pre-and postgandolium fat sat. Axial reconstructions were performed as well as MIP axial and sagittal reconstructions. Axial 2D FSPGR sequences were performed.
FINDINGS: There is mild glandular enhancement involving the left breast. There are scattered foci of benign-appearing enhancement throughout the left breast, but there are no areas of worrisome clumped enhancement or morphologically worrisome masses in the left breast. There are multiple cysts seen in the left breast. The largest measures approximately 4.8 cm in diameter. There are no enlarged lymph nodes seen in the visualized portions of the left axilla.
The right breast shows mild glandular enhancement. In the lower inner quadrant of the right breast, there is a mass with irregular margins, which measures approximately 2.3 cm in diameter and has a biopsy clip associated with it. This is consistent with the patient's biopsy-proven invasive carcinoma. Additionally, there are areas of abnormal enhancement along the margins of this mass, which make the entire area of abnormal enhancement measure approximately 4.6 x 2.6 x 3.0 cm in AP, cephalocaudel and transverse dimension. This associated abnormal enhancement is probably related to associated intraductal disease. Multiple abnormal appearing calcifications are seen on mammography in this area. Also, of note on this examination is abnormal appearing ductal enhancement in the medial aspect of the right breast, best seen on images #19 and #20. This is also appreciated on image #45 of the axial reconstruction study, as well as image #36 of the axial reconstructed breast. Additional area of neoplasm, i.e., DCIS, in this area cannot be ruled out. If breast conservation surgery is contemplated in this patient then would recommend MRI-guided core biopsy.
Of note, the area of abnormal enhancement in the lower outer quadrant of the right breast extends close to the chest wall, but there is no evidence of invasion of the chest wall. On image #29, in the posteroinferior aspect of the breast, close to the chest wall, are a few enhancing nodules, the largest measuring approximately 5 mm in diameter, which have increased signal on T2 weighting and are probably related to lymph nodes. Neoplastic involvement cannot be ruled out, but these are not morphologically enlarged. There are multiple cysts seen in the right breast, the largest measuring approximately 3.3 cm in diameter. There are no enlarged lymph nodes seen in the visualized portions of the right axilla.
After reading that, I can tell you one thing - if I ever have another child I'm going to name her Axilla. Axilla Silberman - has a ring to it, no?
I also kinda love Glandular Enhancement, but I'll let the movie stars take that one.
I looked up all the words I didn't know and sorted it all out. Lots of it has to do with the MRI testing, but basically, it confirms what the doctor said, I have a large tumor and possibly more in other areas, not all necessarily in the same quadrant - the fact that it's in the center (medial) is the concern. Nothing seems to be in the lymph nodes (as far as they can tell) and the cancer hasn't spread to the chest wall, all very good things. It hurts quite a bit and I figured the pain was from attachment to the chest wall, but now, who knows?
The one thing he didn't mention yesterday was the most important line to me: "If breast conservation surgery is contemplated in this patient, then would recommend MRI-guided core biopsy."
I live in California, for chrissakes, I want to conserve everything! I grew up with the idea of conservation rammed down my throat. I'm supposed to conserve the environment, conserve the river, electricity, the habitat of animals... They think I'm not going to contemplate conservation when it's my own body part?
My body is my environment and I want to save it.
So, I'll call him Monday and ask if he can set up that test, and hopefully, my insurance will approve it. I'm sure a mastectomy would be cheaper for them, but I'm still a young thing and I need to nurse little Axilla to give her a good healthy start in life.
I did call the oncologist to discuss shrinkage, but he didn't return my call. Not a good sign if you ask me - he did have all day.
I plan to get the MRI films, so when I do I'll post them for your general breastical titillation.
Thursday, September 17, 2009
.....the left breast.
Ding ding ding! My left girl is free and clear of cancer, so now, whatever happens, I get to have a mismatched set.
Asymmetry is interesting - just ask Picasso.
In the right, I have multicentric disease (a fancy way of saying cancer soup, which we knew) The MRI, which he emphasized is not always accurate, shows a tumor size of 5 centimeters, not the 2 we thought before. He also said that until it's out, they won't know for sure how big it is.
I like this man, he never led me into anything. He told me the results and is letting me ask questions to come to my own decision, while giving his subtle opinion.
He said the goal is, of course, being cancer free. I agreed with him, duh. But, if I can possibly be cancer free with breasts, that's what I want to do.
Although he didn't say it, I sensed he feels that a mastectomy would be best for me. He did say due to the nature of the disease and where it's located, isn't sure that I'd get good results with lumpectomy, but he's willing to see. He did say he always tries for lumpectomy first, that is the standard of care. But, I have a lot of cancer.
So, my choices appear to be:
Mastectomy, immediate reconstruction, and chemo.
Chemo first, possible lumpectomy, radiation
Chemo first, not enough shrinkage, mastectomy
He is going to fax my MRI results to my work, so I'll see them tomorrow. I do much better reading than I do hearing, so after I get them I'll have more questions (although I had plenty) and a better idea about what I'm facing.
He also suggested I call the oncologist to see if he even will do chemo to shrink the tumors first. I'm way ahead of him - I already asked him that and he said it was possible. We'll see if he thinks so after he sees the MRI.
If I have to have a mastectomy, I asked when the plastics guy comes in to play and he said a couple of weeks before surgery.
Now for those of you who think I should get get the cancer out and be done with it - the reason I don't want a mastectomy is more than vanity, although that certainly plays a role. Particularly as I'm too small to have a DIEP reconstruction and would have to have implants - as I age one goes south and while the other is still waving hello!
A very real consideration is lymphodema, which would be a lifetime problem. My work and my recreation relies on my being able to use my arm, and my right arm at that. Of course, even with a lumpectomy I could end up with lymphodema if they find the cancer has spread.
Right now, I'm leaning towards trying chemo first but I also can't make up my mind until I read the MRI report.
I forgot to tell him how much it was hurting. It is very unlike me to miss a chance of getting pain pills. I hate pain. Migraine taught me that.
I asked how critical it was that I make a decision quickly. He said I had a couple of weeks. So, I will weigh my options carefully - this may be one of the biggest decisions I have to make.
What to do???
Tuesday, September 15, 2009
Did you know the magnets in these MRI machines are so powerful that if you have a piece of metal in your eye and don't know it, your eye can turn to soup and explode in the machine?
I don't know it either but it's a story I love. Thinking about exploding eyeballs has always been a favorite pastime of mine.
Anyway, as far as I know I have no metal in my eye or any other part of the body, so I check no after no on the papers. Those questionnaires are very thorough. No, I don't have a penile implant. No, I don't have an eyelid stent. (?) No, I don't have a pacemaker. I do enjoy imagining what would happen if I got in the machine with one of those things though.
Somebody should make a horror movie about that.
Apparently, they are going to inject me with contrast dye too, so I have a long list of questions about allergies to fill out.
No, to my knowledge, I am not allergic to Gadolinium.
The ubiquitous TV was on but it's a large room and this time, I sat far away. There seemed to be three sections that people self-separated to - one for people near the TV, one half way down, and at the very far end appeared to be the men's section, all waiting for their wives, I presume. I sat in the middle.
Suddenly, a man who'd been sitting closest to the TV gets up and turned it on full blast. And, I mean full blast, as loud as it would go. All heads turned. For a second, I couldn't figure out why he did that, he was right in front, he had no problems hearing it. But, then I realized, President Obama was speaking.
Now, I'm a well-informed person, I listen to the man's innumerable prime time speeches, I heard his speech to school children, (which I liked quite a bit). I am old-fashioned and still read newspapers every day and also read news online. So, I've heard his healthcare pitch.
Now, while I'm sitting in the breast center, thinking about the possibility of eyeball soup dripping from my socket from some unknown metal I might have gotten in my eye, in order to determine if I'm getting one breast chopped off or two - well, it's is not the time for me to be lectured at by anybody. Not Joy Behar, and not Barack Obama. No, not even Oprah. I want this breast center to be a place where I can get away from controversy and just think about boobies.
But, that man unilaterally decided that even though I sat 25 feet away from the TV, I should be forced to hear the president speak. It wasn't enough that he hear it - nope, everybody had to.
I really, really, really, really need one of those pocket universal remotes so I can turn TVs off. It would have been amusing, since he was so insistent everybody hear it, to have it suddenly shut off. Hey, two can play that game!
Anyway, despite the fact that it would probably brand me a racist, I asked the very nice office lady if she could turn down the TV a bit. She found the remote and turned it down. The woman next to me thanked me for speaking up - yeah, my entire life is being thanked by cowards for doing what they were afraid to do. But, it was still too loud for me to concentrate on exploding eyeballs, so I went to the men's section to finish the paperwork, hoping they would find me when it was time.
Here's a photo of how far away from the TV I had to get to not have it blaring at me:
They soon called me into the testing area, and had me undress except for my underwear. She gave me scrubs to put on, but all they had were size large. I weigh 97 pounds right now, and large scrubs are really, um, large. I could pull the drawstring pants in enough to close them, with the material ballooning out, crotch hanging to my knees like some mutant late-80s MC Hammer clone. I rolled up the hems so I could walk. I had a dilemma with the gown. It too, went down to my ankles and tying it didn't cover anything as the gap is bigger than me. If I tied it around twice, the armholes were located in such a place that my breasts showed through. Hmmm....well, I was going to undo it anyway, so I'll just hold it closed, elbows down.
I was taken to a room where they put a needle in for the contrast and asked more questions about metals in my body. I assured her that unless the CIA had implanted a tracking device in me, or the doctor who did my appendix surgery a year ago had left a tool in there, I was clean.
Then she said something interesting. The insurance company was only authorizing payment for the MRI on my cancerous breast. Now, I'm having this test for two reasons: to see if the cancer soup in my right breast is located in one quadrant, which would mean I could have a lumpectomy, and also to see if it's hidden in the left breast. LCIS usually shows up in both.
So, it seemed strange that they would only pay for pictures of one of the twins, but the tech assured me that they were going to do both anyway: the doctors refuse to do just one. Seems like an interesting game - insurance pays for one, knowing the doctors will do both anyway. But, really, how much more expensive is it to do both? I mean, they are right there in the machine, right? Who wins here?
Me, I guess.
So, I lie down on a table with my breasts (once again) dangling through some holes. They put a padded thing for my face that has one of those periscope mirrors in it - I'm looking down but seeing forward. Not that there is anything to see. I put my arms up, and they connect some tubing to the IV for the contrast dye - they do some films with and then some without. Then they hand me a squeeze ball that I'm to press if I need help, with a warning that they might have to start over if I do. They push a button and in I go.
I hear some very loud clicking noises and then WOW! I thought the TV in the waiting room was bad; this noise was really loud. It was at that point I realized that they had forgotten to give me the earplugs they'd promised. At first, it was kind of cool. The sounds are super loud but interesting. Whirs and hums and clicks and sonic booms. I'm a child of the 70s, I went to lots of rock concerts and sometimes even sat in front of the speakers, so I'm fine. I pictured psychedelic patterns to the sounds.
The first set of 30 seconds is over and then she tells me through her mike that the next set will be 4 minutes.
Wow. That is even louder. I mean, it's really loud. Even though it's not lecturing me on healthcare policy, I'm getting concerned. I figure after this set I'll take a chance and squeeze the ball. But, four minutes is up and then she immediately starts on the next set - 3 minutes. After than 3 minutes my ears are ringing and I'm worried about getting a migraine, but she doesn't even tell me how long the next set will be - it just starts. I was worried that it was so loud my hearing could be damaged, so the second that set was over, I push the ball quick and stay still.
She asks if I'm okay, and I say that I think I need some ear plugs.
She's shocked. "You didn't get ear plugs? I can't believe you lasted this long!" Then she tells me not to move and puts some in my ears, and tells me we don't have to start over since I'd stayed still. She goes back, does another 3 minutes which is much better, and then tells me she's going to inject the contrast dye for the last few sets.
Interestingly, she didn't come out to do the IV push - it happens automatically with some machine or something. She told me it would be cold as the stuff was injected, but I didn't feel a thing.
I'm done and it was really easy except for the loudness. Nothing hurt, nothing was scary, nothing was uncomfortable, my eyeballs are intact. Even the loudness would have been okay if I'd been sure it wasn't so loud it'd hurt my old lady ears and if I wasn't a migraine sufferer.
The doctors will get the results in three days, so Monday I will call and find out what's going on and have the results sent to me. If they find it in my left breast - that means more biopsies.
I googled MRI decibel level. Apparently, between 110 and 115. Very loud, but I won't lose my hearing along with the boobs. I'll hear the president talk another day.
Probably tomorrow, knowing Barack.
Monday, September 14, 2009
Anyway, here is the picture on the wall in exam room #8, where I was placed. You can click to enlarge.
Do you see what that is? It's a cat, holding a hand mirror out, brushing his hair. Or fur; whatever.
As I sat there, waiting for the doctor who will eventually administer toxic poisons to my body that are designed to kill all fast-growing cells - like, um, hair - I wondered about the logic of putting that picture in an oncology exam room.
What is it trying to tell me?
Is this a mid-chemo cat, brushing his hair while it's coming out in big chucks that we can't see? The eyes do look quite demonic and distressed. Is he soon to be an ugly, skinny, sickly hairless cat that will have to wear a full body do-rag with big earrings?
Or, is this supposed to demonstrate what happens after the chemo? Is it telling me, never fear, cats and woman both grow their hair back after chemo and pretty soon, I'll be looking in a mirror, brushing my fur too?
Is it an evil joke, torturing us cancer patients with the knowledge that even a cat can brush its hair, and we can't? Ha ha!!
The fact that it's a pussy cat - is that a subtle hint about the places I'll lose my hair?
I couldn't figure it out, so I stopped staring at it, and I picked up a wig catalog until the doctor came in. (Some of those wigs looked like they could have been made from cat fur - maybe that was the message? A promotional poster from the cat hair wig company?)
The doc, by the way, was wearing a tie with old Chevys and big American flags on it. I am now pretty sure he picked that picture out himself.
I liked the guy a lot and found him personable and intelligent in a geeky way, which is my style. But unfortunately, he had nothing to tell me. He said he can't make any recommendations until after I have surgery and he doesn't usually see patients until then. I told him I had a strong desire for lumpectomy over mastectomy and could the cancer be shrunk down before surgery to accomplish that goal? He said yes, but he also seemed to think a lumpectomy wasn't likely given my cancer soup, but "I'm not a surgeon.." He said my large breasts would be good for lumpectomy as smaller breasts have worst cosmetic results but unfortunately, my thinness would work against me if I have mastectomy - no DIEP reconstruction for me as there is no extra skin or fat anywhere on me. I'd have to get those big, fake, plastic, hollywood boobs I always thought looked ridiculous.
Anyway, it was kind of a wasted appointment but it was nice to meet him, and he made another appointment for November 10. He figures I'll be a month out of surgery by then, but if it comes earlier, I can always reschedule.
Tomorrow, the MRI.
I hope at the MRI place there are no pictures of cats with their nipples in machines.
Sunday, September 13, 2009
Honestly, I think I need a staycation.
Thursday, September 10, 2009
Since I still hadn't heard from the breast center, I called them in the afternoon. They still didn't have my paperwork. I called the doctor's office, and she swore she'd sent it. I called the radiology company back, explained that it had been faxed to the number on the paperwork - and they gave me a different fax number. I called the doctor's office, and gave them that new fax number, and she said she'd send it right over.. I waited 30 minutes and call the radiology center back, and finally, there it is.
So, I schedule my appointment for Tuesday the 15th.
The day after I see the oncologist and 15 days after I saw the surgeon. I'm sure we all thought my breast would be gone by now.
Why do I feel like all of this is happening backwards? The oncologist will likely recommend chemo for me, but until I know exactly where the LCIS is, I can't decide what kind of surgery to have, so I probably should wait to see him until I get the MRI results. But, I won't reschedule- it took two weeks to get this appointment. And, my hope is to have chemo to shrink the cancer enough to have a lumpectomy (if it is in more than one quadrant) but until we know - I can't get an answer on that.
Anyway, now it's in the works. Progress!
One of the PE teachers came in and brought me a teddy bear from him and his wife. That was very sweet of them both, and it's sitting on my counter.
(For those of you who don't work in schools - I've found the PE teachers are generally some of the nicest ones of all. Finding that out was quite shocking to me, remembering my own school experience with PE and teachers. I spent 12 years absolutely sure they lived for nothing but to torture and humiliate nonathletic weaklings such as myself - and now they give me teddy bears!)
Another teacher, who had been through breast cancer 3 years ago, gave me a Brighton bracelet that she wore when she was going through it. It is designed for breast cancer patients, and it has charms on it that say "relax" and "heal" and the pink ribbon and other motivational sayings. It's very pretty, as is she, and I hope that someday when I am cured I will be able to pass it along to another woman starting down the road to healing.
Actually, what I hope is I never have to pass it along to anybody. I truly hope nobody ever has to wear anything like that again.
Wednesday, September 9, 2009
That advice was given by somebody in the online world, who is unfamiliar with my personality. Nobody who knows me would ever advise me to be assertive. In fact, they are usually wishing I had a bit more of that shy gene.
I do have a laziness problem though, particularly when it comes to doing stuff I don't want to do.
I was told by my surgeon on September 1st that I needed an MRI and that it would take a week or less for the insurance company to approve the test.
Today is day 9. My most definitely unassertive husband, who usually believes in "letting people do their jobs" decided to remind me that I should have the appointment by now. I knew that, of course, but not being in a hurry to hear I need my breast chopped off, I had decided that this was time for my unassertive side to be set free. I had vowed to be more trusting of people, like he is.
But, since he called me to remind me, that means he's worried, and probably imagining that cancer growing so fast it pops through my breast and strangles him. I decided to appease him, go back to my true nature, and call the doctor.
I called at noon, when everybody at school is at lunch and I have a second to myself. Unfortunately, their office staff is gone then too, so I reached somebody in India, at least judging by the accent and the echoing conversational delay. The office will be back open at 1:00, the kind lady tells me.
At 1:05 I called back.
I got a busy signal.
Seriously, dude, a busy signal? I've not heard one of those since 1982.
At 1:09 I called back. Yes, a busy signal again.
I feel like I've gone back in time. I can't even leave a message! I can't even reach India!
I tried again at 1:57, and this time I reached an actual office-staff person. I explained that I was waiting for insurance approval for an MRI. They said they'd check, and I was put on hold.
I held for a couple of minutes.
I was cut off.
Whew! I'm back in 2009 again.
I called back.
I repeated my name and explained that I'd been cut off. The person, again, put me on hold.
And again, I was cut off.
I redialed, and this time, in a menacing but still nice voice (after all, these are the people who work for the guy who is wielding the scalpel) I say, "I'm Ann, and I've just been cut off for the third time...." She mumbled something about her not being responsible and she transferred me to somebody else.
Success! The call went through. I explained the problem (again) and said I'd been waiting for almost ten days, and I'd been told less than a week. The woman I was speaking to said that people at the insurance company were probably going on vacations, and maybe that's why it took longer. She'd call the insurance company and see what was going on, and she'd call me back.
Three minutes later, the phone rang. Oh, they have the approval, they'll fax it right over to the radiology company.
Vacations, huh? That approval paper was probably vacationing in my file this entire past week. It was sucking down margaritas right next to my pathology reports, while I trudged along at work, waiting for a call.
I have a feeling that if I hadn't picked up the phone, I'd be waiting on that MRI until long after my chemo was done. Or, at least, until my oncology visit the 14th, when he asks why I hadn't decided on surgery yet and I explain I'm still waiting on an MRI.
This is a prime example of why you have to keep on top of things. And, despite my lack of desire for the things that are about to happen to me, I guess I have to make them happen anyway.
But what I want to know is - what if you are truly too exhausted and ill to make people do their jobs correctly?
At least we still have private health care and it only took one phone call (with a few hangups) to get it sorted out. Can you imagine if the government ran it? Can you imagine how many calls I'd have to make? How many busy signals? How many places I'd have to go? Have you ever tried to get a new social security card, file for unemployment, or have you ever gotten the runaround at DMV - or a school district? (I work for the government - I know.)
Now try it hairless and sick on chemo.
Tuesday, September 8, 2009
My life feels like it's on hold, especially when it comes to my physical appearance. I'm a bit of a fashionista and I love to shop - but now?
What's the point?
I was going to bra shop, ...well, now I can't. Will I have two breasts in October? Will I have one? Why spend $200.00 for something I may not need?
I had planned on purchasing some new clothes for the new school/work year - now I can't. What will my figure be like? Not only don't I know if I'll have breasts or not, but will I gain weight from steroids, or lose weight from chemotherapy-induced vomiting?
My hair needs to be colored again. Should I bother? I pay $110.00. What if they want to do chemo first to shrink the tumor? Will I have hair in three weeks?
Hell, I'm due for my botox and I don't know if I should even get that. If you have no eyebrows - does it matter?
It's hard to make a decision about anything physical without any answers.
My anniversary is coming up this week and my husband and I are going to a swanky restaurant. I usually splurge on a new dress for the occasion - but it would be a waste of money now, right? I might only get to wear it once.
And, what about money? Who knows how much I'll be able to work?
It's hard to be in limbo. I've always tried to dress nice for work to set a professional example for the students, but lately I'm pretty much in jeans. Nice jeans, but jeans nonetheless. There's no dress code for me, after all. Why bother?
I guess I gave up.
The other day I was "too tired to cook" (also known as playing the cancer card) so we went out to eat. We came home and I saw a box on my doorstep.
I hadn't bought any shoes; I'm not buying anything. Did my husband? Nah, he wouldn't buy me shoes, he'd never be able to figure out what size.
Puzzled, I open the box and find the most gorgeous, hot shoes you've ever seen inside.
Those shoes gave me my mojo back.
Not because they are so pretty, but because they were from friends who care about me. Cancer can't take that away.
Emily, I know it was your idea, and thanks so much!
Monday, September 7, 2009
Yay me! It's relatively rare! In fact, each time I use those search terms, google asks "Did you mean to search for ER+ PR+ HER2/neu+?"
I always knew I was different.
In case you aren't up on your cancer terminology, ER means estrogen receptors. PR is, you guessed it, progesterone receptors. The pluses or minuses means the cancer grows in response to those hormones.
Naturally, I had a quick consult with Doctor Google. Pluses after the ER/PR are an excellent sign because all you have to do is block these hormones and the cancer doesn't grow. ER+ cancers responds to tamoxifen, an estrogen blocking drug. Unfortunately, in combination with PR-, it's not so good. I have only a 33 chance of that drug working to fight off cancer. I think they give you something called an aromatase inhibitor instead of tamoxifen or in conjunction with it.
The HER2/neu + is not so good. I won't give the technical explanation, which has to do with an overexpression of proteins in a specific gene. It does mean I have a more aggressive form of cancer with a higher likelihood of it returning. But, they apparently have a new miracle drug that combats HER2+ cancers now called herceptin.
Also, with the ER+, PR-, HER2/neu + cancers, they like to remove or at least stop the ovaries from functioning, (they kindly call that an ovarian ablation) which means I could have it done surgically or with medication.
Whatever it means, it's a lot better than the dreaded "triple negative" which has a poorer prognosis than any of the others.
Now, I'll get more information when I get my 2nd opinion from a live doctor.
I am still waiting for the MRI to be set up - should hear soon. And, my appointment with the oncologist is the 14th.
Sunday, September 6, 2009
My appointment with the surgeon, Dr. Raja, was set for 10:00. I gave my husband the choice whether to go with me or not. I know he's not fond of medical people, and I don't really feel the need for emotional support at this time. Plus, in the future he's going to have to take some time off to help me, so if he didn't want to leave work it was fine by me. But he wanted to go so I gave him a chore - take notes. I figured it'd occupy him, and if the doc said anything I wanted to refer back to later, it'd be written down.
After sitting in an empty waiting room with, yes, a blaring TV (I really, really need a mini universal remote), we were called in. The doctor introduced himself to both of us,
Not knowing that over the past week I'd read 12 books on breast cancer and a zillion webpages, he started from the beginning: the anatomy of the breast, what types of cancer form in the breast, what general treatment options there are, etc. I didn't interrupt him to move on to more relevant conversation (like me, hello!) because my husband is extremely old-fashioned when it comes to medicine. He's of the frame of mind that whatever the doctor says goes. The less my husband knows, the more he likes it. He'll open his mouth like a baby bird and take a prescribed pill, not knowing what it might be or even what it's for, just because a Doctor told him to. So, I knew he needed the basics.
And, because it was a doctor talking, he'd listen. If it was me talking, he'd be thinking about baseball.
I, on the other hand, have been working frantically to get my PhD in breast cancer so I can confer as an equal and participate in my treatment. I want to know everything that has, could, or might happen to each one of my individual cells. I also want to know the qualifications of the doctor, how many times he's done any procedure, and what he ate for breakfast.
Obviously, if it was Fruit Loops, I'll be forced to get a second opinion.
Dr. Raja had not gotten full pathology reports yet, so no info on estrogen/progesterone receptors, HER2/neu status, etc, which would tell me how fast-growing and aggressive it was and what kinds of treatments can be done. They'd probably come in the next day.
I expressed a strong desire for a lumpectomy over a mastectomy and he said if all my cancers were located in the same quadrant of the breast that would be possible. I already knew this, but he confirmed that radiation and a lumpectomy have the same statistical cure rate as mastectomy, so if at all possible, a physician tries for breast conservation.
If, however, the cancer has spread through two quadrants of the breast the surgical results will not be appealing and so mastectomy will be done. The good news is I could have an immediate reconstruction after mastectomy, so I won't have to wake up without a breast. When we know more, he'll refer me to a plastic surgeon. (I'm going to see if I can weasel a face-lift in too - heck, I'm already under, right?)
One of my cancers is LCIS, (lobular carcinoma in situ) which often shows up in both breasts but is undetectable early on, so we are going to do an MRI to find out if it could be in my left one too, and also to see the extent in the right which will determine the surgical course. He warned me that MRI's often have false positives, which I'd known. so it could mean another biopsy. Yay, more cookies and lemon water!
He did a quick exam but because of the bruising and hematoma, he couldn't get an idea of where they had done the actual biopsies, so didn't even have that visual clue.
He felt my lymph nodes and said none were swollen. He said he thought my cough was unrelated to the cancer, which was excellent news and had been my biggest worry. He would set up a chest x-ray to be sure.
He has lots of experience doing the sentinal node biopsy so I will have that procedure at the time of surgery. In the bad old days they just cut your armpit (known to us BC PhD candidates as the axillary area) and scoop out tissue - then find lymph nodes to see if they have cancer cells in them. That tells if it's spread but it has some pretty nasty side effects, including a lifetime of lymphodema. Now they do nuclear imaging and find the first node that the lymph system from the breast drains into - the sentinal node - and test that. If they find no cancer cells there is a reasonable certainty it hasn't spread. It's much less invasive and with no risk of lymphodema.
Unless, of course, they find cells in the sentinal node - then they get out the ice cream scoop.
He is going to set up a meeting with an oncologist as soon as the rest of the path reports come in, and then if I do need a a mastectomy I'll meet with a plastic surgeon too. He said I could be at stage II, which is really good news.
Curable, he said.
Best. Word. Ever.
He also said there was a "breast navigation program" he would hook me up with. Frankly, it sounds more like something my husband would enjoy. I jokingly asked them if they'd come over and clean my house and he seriously said he thought they would.
Won't know for sure until the rest of the stuff is done, but I left feeling very optimistic; much better about the whole thing and like a weight has been lifted from my shoulders. And, possibly won't be taken off my chest.
He sat and talked with us for a full hour. Last time any doctor spent a whole hour with me, I was working as a bartender and was serving him drinks.
And now, more waiting.
Saturday, September 5, 2009
The very worst part of this experience is the waiting. You think you have cancer, but you have to have your tests to prove it. They do them, then you wait for the results. They show probable cancer, and you need more tests. You wait, then they confirm cancer. Then you wait for doctors, for more tests, for more results, for staging, for surgeries. During all of this, you can't make final plans, you just....wait....
The unknown is the worst. If you know you have cancer, but don't know anything else, your mind takes you to dark places. And back. One second, you are thinking, "Oh, I'm fine, it'll be nothing, a blip on the roadmap of life" and the next second you are giving old people the finger because they get to have a long life and you don't.
And, you notice physical things more. I have had a nagging dry cough for weeks. I probably wouldn't have paid any attention to it before the big C, at most it would have been a mild annoyance. Now, of course, it's cancer metastasized. And, what is that pain in my arm? Is cancer in my bones too?
For me, waiting for the surgeon's appointment, life felt like it stopped for a while. I did everything I was supposed to, but in the back of my brain was a big, flashing, pink neon sign screaming "CANCER!" I couldn't turn that darn thing off no matter how much I tried, and I'm sure if the Green Police looked in my eyes they'd have busted me and made me buy carbon offset credits.
My lowest point was Sunday. My husband had gone to SF to see a baseball game with his daughter, and my son and I had planned a day together. We were going to go out to lunch, then buy him some school clothes, do a few other errands, and then go out to dinner at Boudins, where you can get clam chowder in a bread bowl, his favorite.
I felt like I was in a fog that morning and couldn't imagine leaving the house or even my bed. But, having a kid means you don't really get to wallow so up I got and off we went.
He wanted taco bell for lunch, and as I ate my taco I glared at a woman with her grandchild. Sure, SHE gets to buy her grandchild crap food, which will probably end up giving the kid cancer, and I'll never get to see my grandchildren. I wonder if I should go shopping for baby clothes anyway? I mean, I can put them in a box for my future grandchildren I'll never meet. Baby clothes don't really go out of style, do they? Why should I miss out on the fun of spoiling my grandchild? While my brain is swirling in darkness, I'm smiling and chatting with my son about computers, video games and school.
Then we went to a mall and bought him some shorts. We went to Brookstone, where I bought an external battery pack for my iPhone for all those chemo infusions that I knew would be worthless since my cancer has already spread and I'm going to die. At least I'll be able to play Stone Loops for six hours straight before I leave this mortal coil. We looked at some live little frogs encased in a tiny plastic case that are supposed to be easy to care for - just drop a pellet through the hole once a day and that's it. I know how that frog in a box felt. Powerless, trapped, waiting for the next pellet drop.
We went to the bookstore to get him To Kill a Mockingbird for school, and I peruse the cancer section. We buy a puzzle to put together later, and I take him to Gamestop to buy a video game he's been wanting. My son got cheated - he's got a mom with cancer, he deserves a video game.
Then we walk by Teavana, and I decide to buy some tea. It will taste good when I'm sick and it's healthy for you. I don't see any Liptons, so I look through their catalog and read this line: "Research indicates that white tea may inhibit the growth of certain forms of cancer."
Certain forms of cancer? What forms? Prostate? Breast? Hmmm....should I buy some of that kind of cancer-removing tea? What if it only cures, oh, say Bladder cancer? But, I read further and see that it says it's "excellent for skin by reducing fine lines and wrinkles." Okay, maybe I can look a bit better in my coffin, so I decide to buy some white tea.
I go pick out one of their tins to fill with tea and a mug with a removable infuser, and the sales guy is heavily upselling me. I thought I was resisting - no, I don't want the bigger one, no I don't want this....my son pulls me aside as the salesman starts scooping tea into the tin, and he says, "Mom, that's going to be really expensive."
I mentioned before that my son is excellent at math. I didn't mention that I'm very Barbie-like. "Math is hard." I think it's under control, the tea is $15.00, right? The mug is another $15.00. No biggie. The guy rings me up.
Okay, I really am bad at math. But, it's packed and boxed and hey, it could cure my cancer, right? What if I die because I put back that tea? I pull out my card and pay, and off we go.
First time I ever got fleeced. That's what cancer does to you.
We did have a nice dinner at Boudins - we sat outside and I had a tomato sandwich and a beer (which I know could cause those cancer cells to multiply faster but what the heck, I'm going to die anyway) and my son had his soup. We sat outside and enjoyed the weather, and despite my dark thoughts, it was a very good day. I was glad I got up and out.
Ask any cancer patient and I'll bet they tell you the same thing. Waiting is worse then knowing. Ask me, and I'll tell you to get up and out anyway, no matter how dark things seem. You'll feel better.
Yet, suddenly, people at work started hugging me out of the blue, for no reason that I could see. I'm not really that popular and am most definitely not a hugger, so this sudden display of affection was suspicious. People were starting to ask me how I felt, even though as far as they knew, I was healthy as a cancer-free horse.
Clearly, word was getting out.
Schools are gossipy places. I suppose all workplaces are, but for some reason, I think schools are worse. All those teenage hormones floating in the air rub off on the staff, and the whispering begins.
Hey, I wonder if those extra hormones gave me cancer? Somebody should look into that.
Anyway, I realized this was not going to be a secret much longer, if it even was now. Plus, it'd be a really hard secret to keep if I had to come to work one day without breasts and hair.
I realized I had to take matters into my own hands and tell people myself.
But, how to do it?
I could go on the morning annoucements, but that might freak our new 6th graders out. I could go into each classroom and interrupt lessons, but that news would really only fit into the science curriculum.
I decided to send an email to the entire staff at once, and get it over with.
A detour back to gossip for a minute, just to explain the text of my email: . I'm a tiny woman with relatively large breasts, and I'd been told over the years that some people in the school suspected my girls were fake.
Yes, my real/fake boobs had been the subject of discussion, that's what working in a middle school is like.
So, I decided to dispel two rumors at once:
I’ll keep you all informed. No worries.
I wonder how many got the Seinfeld reference?
Friday, September 4, 2009
I was told that my biopsy reports would be sent to my doctor by the next day and now it's the next day.
I debated what time to call if I didn't hear. I figured 3:00 pm would be fair - it gives the office staff time to check the fax, give the report to the doctor, have him look over it, see his scheduled patients and make time to call me. If he hasn't called by 3:00, I'd call, which would let them know I'm waiting, but still give them time to call me before their office closes.
3:00 sounded like a good compromise.
At 10:00 a.m I called and got their voice mail.
Not wanting to be pushy, I left a cheery little message. "Hi, this is Ann Silberman. You guys are supposed to get my biopsy results today, and I just wanted to let you know to call me on my cell and not my home number. I'm ready to hear the bad news!"
Yeah, I actually said that.
The doctor called me an hour later. I was in my office but ran through the principals office to the back door (while she was in a meeting) so nobody would interrupt me.
He said the news was "bad, very bad." and that I had cancer. I told him I knew. Did he sound shaky on the phone? I think he sounded shaky or nervous. He's been treating me for ten years, he probably doesn''t like to tell long-term patients that kind of news. Maybe, though, it was my hearing that was shaking and nervous; eardrums trembling. After all, he's been a physician a long time, even served on a battlefield, and probably had given this kind of bad news thousands of times.
I asked him if it was invasive, and I heard him rattle some papers, then again, he said, "yes, it's bad, it's invasive ductal carcinoma"
I asked him if he could fax the pathology report to me, and he said yes. He said he'd schedule me to see a surgeon "immediately." I thanked him and hung up.
I sat outside the courtyard in the middle school and looked at the flowers, and thought, "wow, I have VERY BAD cancer! I need to see a surgeon NOW." I ran inside to the fax machine, imagining my impending death. I mean, the doctor was nervous, right? Doctors don't get nervous. They see cancer every day. If he said it's "really bad" twice, that means I'm dying. Oh my God, I have a 12 year old, a family! I can't have really bad cancer! I want the good cancer!
The doctor didn't delay, the fax came in immediately.
Preliminary Results: 2x Positive/Atypical: recommend surgical follow-up pathological description: calcs DCIS & LCIS. 7:00 - Infiltrating Ductal Carcinoma.
RIGHT BREAST: 7:00, Ultrasound-guided Core Biopsy: Infiiltrating Ductal Carcinoma
RIGHT BREAST, Stereotactic Core Biopsy:
1. Ductal Carcinoma in Situ, Cribriform, Solid, and Comedo Types, with calcification. High Nuclear Grade.
2. Lobular Carcinoma in Situ and Atypical Lobular Hyperplasia
I don't have one cancer, I have three!
I have cancer soup.
(Cancer Soup would be a great name for a rock band, by the way.)
Okay, now knowing I'm seriously ill and probably dying, I run to my computer to confer with Dr. Google.
CRAP! The internet goes down at that very moment, and to continue the Dave Barry theme - I am not making this up. I stare at the computer in disbelief. Wild-eyed, I run to the ladies in the front office and ask: can you get online? They think so, and one gets to our district intranet, so I run back to my own computer. But, I can't get anywhere. Now, I'm a former Network Manager so I know my computers, and I think there is a proxy error going on. I go back up front and try it myself on her computer, and yes, the internet is definitely down.
I grab my iPhone and google "infiltrating ductal carcinoma, ductal carcinoma in situ, cribriform, comodo, high nuclear grade and lobular carcinoma and atypical lobular hyperplasia."
(I dare you to try that on an iPhone keyboard.)
I think I overwhelmed Dr. Google and my poor phone - they didn't handle those search terms as well as I would have expected. It's pretty hard to read google scholar and google books on an iPhone, and I realized that for the first time in years, my iPhone won't cut it. I need a widescreen monitor and a real keyboard.
I call tech support, wanting to scream "Get me online, I need to find out if I am about to die!" but instead, I say, "Hi, this is Ann and our internet is down." She tells me she thinks there is a proxy issue going on and they are going to test things, and I suggest that she "test things" on me. So, she walks me through a new setting and whew....
The internet is back.
How did people know they were sick in the old days before computers?
Instead of trying to google, I decide to take advantage of an online acquaintance who has an OB/GYN in the family. I type my path reports and hit send to ask for another kind of online second opinion.
Then I turn back to google and narrow my search terms.
(Bing, are you feeling left out yet?)
After reading a few pages of results I calm down a bit. It appears that I just have regular old breast cancer - yes, I have an invasive form and it's serious, but not the "you have three months to live" kind. At least, as far as I can tell.
Then my kind friend and his relative respond, within 30 minutes, and I get the same message. I have garden variety cancer(s) - a bit more aggressive than others, but I'll probably make it to Christmas.
I hate Christmas. But suddenly the thought of corny songs, spending money on stuff that's not for me, and a tree littering needles inside my house make me very happy.