Fighting Breast Cancer

I went for my yearly exam at my OB/GYN this week.  In addition to the usual humiliations that one normally endures during a GYN visit, I intended to have the doctor drain a so-called cyst in my right breast.  A pap smear and a giant needle stuck in my boob all in one wonderful day.  What could be more fun?

A little backstory: 

At my previous visit with my doctor, I had pointed out a lump that I had found in my breast. He told me that it was Fibrocystic Breast Disease and that I had nothing to worry about.  He said that if the cyst grew, that would mean that it was filling up with fluid, which he could easily drain in the office.  Because of this benign diagnoses, I didn’t feel a sense of urgency as the lump grew in my breast between appointments.  It wasn’t until I developed a constant, dry, hacking cough that I began to worry…or should I say, my husband began to worry.  

My cough was so bad that I could barely talk on the telephone.  I thought that my cough was allergy / asthma induced, so I made an appointment with my doctor a few months early to take care of the cyst in my breast and to get an inhaler for my cough.

During my exam, I reclined on the table and lifted my arm over my head as the doctor requested.  I knew something was wrong by the look on his face.  He led me to another room where he had an ultra-sound machine set up for pelvic exams.  He then reached for a prescription pad and ordered me to get a mammogram at a nearby radiologist’s office.  I was shocked by how easy it was for him to do that.  If all he had to do was write my name at the top of a pre-printed prescription pad, why hadn’t he done that the year before?

You see, the year before, like many young women, I was not offered a mammogram, ultrasound, biopsy- nothing.  This was a terrible mistake on the part of my doctor, but again, all too common in younger women.

Check out this article.  It explains that misdiagnosis or delayed diagnosis of breast cancer is the most common medical malpractice suit.  Now, before I get any hate mail:  I am not condoning or condemning the suing of doctors.  I love doctors.  I am simply posting this for everyone’s best interest.  I would hope any doctor reading this would download the article, read it, and pass it on to a colleague.  It could save a life.  Take all lumps seriously doctors; follow them closely or stick a needle in it!  Please! (and thank you)   

I just made an appointment to have my first mammogram.  I never thought I’d be needing one at the age of 30.  As evidenced by the various email jokes forwarded to me over the years by my mother, I’m assuming I’m not going to like it.  I just hope the technician’s hands are warm.

I had my first mammogram today.  It wasn’t all that unpleasant.  I don’t know why, but for some reason, I really dressed for the occasion.  Not that putting on a nice outfit would sway the results in any way, but it just felt right (at least for the brief time until I had to take my clothes off and put on a very unflattering hospital gown.)  “Make sure it’s opens in the front” the nurse said.  What am I, an amateur?  Of course I know to have it open in the front!

I wasn’t disappointed.  Her hands were warm.  The technician guided me into the room and was very sweet and talkative.  I didn’t catch her name, which is a shame since I like to be able to recall the names of all the people who grope me.  Grope me?  More like mauled me.  She and that dreadful machine. 

Ms. Warm Hands had me stand before the machine while she prepared the film and made some adjustments.  Then I gracefully unveiled my offending orb and placed her delicately on the shelf of the x-ray machine.  Ms. Warm hands pushed me further into the machine (hey! No rough housing!) and then placed her hand on my boob to hold it in place while she mercilessly lowered the top panel.  Then she gave it a few sadistic hand cranks for good measure and told me to “hold still”.  Where else was I going to go?  She had my tit trapped in a vise grip.  I felt as helpless as an animal caught in a trap, although chewing it off wasn’t an option at that point.

After I was finished with the mammogram machine, I was guided into another room to have a proper ultrasound performed.  A new technician squirted some lubricant on my breast and began to move the wand back and forth.  It kind of tickled. 

When that was done, I wiped the excess goo off of my chest and stepped back into my nice clothes.  What a waste of a good outfit.

I just received the results of my mammogram and ultra-sound.  There is something suspicious that they wish to biopsy.  They want me to come back “ASAP”.  That’s reassuring. 

I’m debating whether I should tell my husband that the Radiologist wants to biopsy the mysterious area in my breast.  God love him, but Michael is just not very stable.  I once dubbed him, “The Italian Version of Richard Lewis” and those who know Michael, know what I mean- and, what I put up with.  I just know that if tell him that I need to have a procedure, he’s going to go out of his mind with worry, and I don’t have a tranquilizer dart to shoot him with.  After all, why should I worry him when it could be nothing?

I decided that I shouldn’t keep the fact that I was getting a biopsy on my breast from my husband.  He grilled me about my mammogram appointment and I didn’t want to lie, so I down-played my description of the appointment as much as possible and told him that it was just procedure, that the mass was probably nothing.  He stared at me blankly for a second.  Then he set his jaw and was grimly silent for about 20 minutes (the calm before the storm).  It wasn’t long before he started banging away furiously on his computer; this is always a bad sign.  Like most neurotic, obsessive-compulsive hypochondriacs, the Internet has become a feeding source for Michael’s never-ending quest for finding doomed information regarding disease.  When he finally emerged from the office, he was sufficiently upset.

He made me give a play-by-play of my appointment over and over.  If I left something out, he would detect it like an attorney with a lying witness on the stand.  He would then ask me to “think about it carefully” and repeat the same question again.  Finally, realizing there was nothing he could do at this point, he provided me a list of questions to ask the doctor when I returned for the biopsy.  I could almost see him going out of his mind.

Michael was pacing the floor and, literally, tugging at his hair.  Meanwhile, at this point, it could be absolutely nothing!  What I have to put up with…

Today was my appointment for my breast biopsy.  I went to the radiologist’s office for my early morning appointment.  On the way there, my cousin Kristopher called me to chat and see how the weather is here in AZ.  We talked about his possible transfer from Michigan to Minnesota (what a move) and exchanged other pleasantries.  I didn’t mention my biopsy or it’s possible implications.

I arrived on time and was shuttled into a room where there was a padded table for me to lay on next to an ultra-sound machine.  I was told to undress and put a gown on.  Then, I laid on the table and waited for the doctor and nurse to come in.

First the doctor numbed my breast in several places with an injectable local anesthetic.  Then she showed me the device that she would use to collect the tissue sample of the mass in my breast.  It looked like a small gun-like device with a long hollow needle inside the “barrel”.  It kind of reminded me of the type of “guns” used to pierce ears, except the needle on this gun was pretty long.  She explained that she was going to ”shoot” the needle six times in my breast at different angles to get six different samples.  The ultra-sound was used to help her with the placement of the gun against my breast.  All together, the process took about 20 minutes.  When she was done, she placed a couple of butterfly shaped bandaids over the points of entry.  She collected the samples and prepped them to be sent off to a pathology lab to be analyzed.

My friend from Michigan is flying out to visit me this weekend.  Great timing.  Cancer is so inconvenient.  Normally when my friend comes to visit me, we hike Camelback Mountian, we go boating at Canyon Lake or we take a daytrip to beautiful Sedona.  Right now, I feel nervous and on edge.  I just don’t think that I’m going to be in the mood to have fun this weekend.

The Radiologist just called me with the news.  I have ”Invasive Ductal Carcinoma“.  She said that it’s the most common type of breast cancer.  Invasive Ductal Carcinoma sounds so clinical.  The thing is, I don’t feel like I have something that warrants a title like Invasive Ductal Carcinoma.  Aside from a persistant, dry hacking cough, and feeling slightly rundown, I feel fine.  I would equate my symptoms with the feeling of having asthma or mild bronchitis.  I’m assuming that I feel this way because I’ve hopefully caught the cancer early and will be able to get through this as soon as possible.

My original doctor (my OB/GYN) called me to tell me that I was “right to be concerned” about the lump in my breast.  He retold me the results of my pathology report and referred me to a surgeon to discuss my next course of action.  I’m scheduled to meet with the surgeon tomorrow, which is so inconvenient when you are expecting guests.  

Meanwhile, my husband has been parked in front of his computer Googling ”Invasive Ductal Carcinoma”.  He tends to overreact when it comes to health issues- while I’m quite the opposite.  I’m certain that everything will be fine; there’s no sense getting upset at this point. 

I met with Dr. S this morning.  He is the surgeon that my gynocologist recommended.  He looked at my mammogram film and examined my breast, then sat me down in his office to go over my options. 

First, he took a piece of paper and drew a line down the center, separating it into two columns.  At the top of the left column, he wrote Mastectomy.  At the top of the right column he wrote Lumpectomy + Radiation.  He explained that, statistically, a lumpectomy with 6 weeks of radiation has the same effect as a mastectomy.  (That was the whole purpose of the chart- to show me that the odds were the same.  He could have just told me that.  I don’t need graphics to understand “equal odds”.)

The choice then, would be which surgery I prefer.  He said that regionally, it seems that women in the western side of the U.S. seem to opt for the mastectomy, while more lumpectomies are performed in the East.  God knows why…and really, who cares? 

Anyway, with a mastectomy, the whole breast is removed, including the nipple.  After the mastectomy, I would have to go through a series of breast reconstruction surgeries.  He said that a nipple would be fashioned and tattooed to match my other breast. 

During a lumpectomy, only the tumor is removed.  Once the breast is healed from the surgery, 6 weeks of radiation is applied to the breast to “sterilize” the area where the tumor was removed.  This sterilization process kills any microscopic cancer cells that may have been left behind during the surgery.  Of course, I found out later, it also- ironically enough- leaves you more susceptible to cancer in the future.  You get lots of lose / lose choices when you have cancer.

Dr. S then told me that once my surgery is over, a pathologist will examine the tumor and an oncologist will decide whether I need chemo or not.  He estimated that there is a 50/50 chance that I will need chemo.

Dr. S is giving me the weekend to make my decision.  He wants to schedule the surgery ASAP.

I can’t believe that this is happening to me.  I actually have to make a choice whether I should have my boob cut off or expose myself to radiation for 6 weeks.  Worse yet, how is my family going to react?  My mother is not going to deal with this very well, at all.  I mean, I’m envisioning her screaming and crying and becoming hysterical, and then fainting.  That is if she doesn’t have a stroke first.  This is not good.  This is not happening.  This is not happening!!!

My husband has no opinion on what surgery I should take.  He said, since survival rates are the same, it was my own personal choice…and believe me, he knew the survival rates were the same, because he spent the whole weekend reading about the lumpectomy vs. mastectomy deal.

I’m still torn as to whether I should tell my parents that I have cancer or not.  Since they live out-of-town, I would be able to have my surgery without having to tell them.  I just don’t want to put them through any pain.  My mother tends to be very sensitive and emotional, so I know that she will not take this very well.  My dad would be okay.  He handles anything really well.  I think I’ll call my brother and use him as a sounding board and gauge his reaction.

I should have known better than to use my brother as a litmus test for telling my parents about my cancer.  As far as emotions go, he takes after my mother.  As soon as I told him, there was a pause of surprise (or maybe he was hoping that I was joking?)  Anyway, as soon as he spoke I could tell by the lilt in his voice that he was trying not to cry.  Then he wanted to pray with me over the phone (he’s a Lutheran Minister).  I said “no thank you” to the praying part.  I don’t know why.  I think that it might be because so far, I haven’t really fallen apart over this and I’ve felt pretty strong.  I think I just thought that if I prayed right then, it would be an admission of my own weakness.  Right now, I don’t want to feel weak.  I want to be strong and just get through this.  I’ll call on God when I really need him, thank you very much. 

When breaking bad news to people, I’ve always been of the School Of Thought which believes that you should just spit-it-out, as “they” say.  The sooner you relay the news, the sooner people can start to get over it.  However, after telling my parents that I have Breast Cancer, I’m beginning to think that I should have pulled the punch of my delivery a little and told them in a roundabout way. 

My Dad is a true-blue Republican…my husband is a hardcore liberal.  They couldn’t disagree more about anything that has to do with politics.  We try to avoid political discussions for the most part- at least while I have breast cancer. 

…but, I digress.  I thought I could break the news by saying something like, “Hey Mom and Dad.  I’m sorry to have to tell you this, but I’ve decided to vote straight-ticket Democrat in all future elections, no matter who is running.  Also, Ronald Reagan was a very mean man.”

I would continue: “Just kidding! I only have breast cancer.”

Instead, our conversation went just like this:

Me:  “Hi Mom and Dad!  How are you doing today?”

Mom and Dad in unison on speaker-phone:  “Great!  We’re on our way home from seeing your grandmother in Indiana.  How are things with you, our only daughter, our precious angel, our most treasured God-given gift?”  (Okay, I made some of that up.)

Me:  “Um…not so good.  I have breast cancer.”

There was silence followed by a thud, which is when I think my mother dropped the phone.  I could hear her screaming, “No!  Oh God No!” 

My dad was fumbling for the phone so that he could talk to me.  I heard the fumbling.  When he finally got back on the line, he sounded despaired and confused, but at least he wasn’t crying.  I told him the whole cancer story, while in the background, I could hear my mother crying and screaming.  How did she know I was’t joking?

Dad says he’s going to “book the next flight out to Arizona” so that he and my mother can be with me through this ordeal.  This should be good.

Did I mention before that my husband is a neurotic crazy person?  Well, for once, his neurosis may have come in handy.  Since my cancer diagnosis, Michael has called every single person that he knows trying to get information and opinions about lumpectomies vs. mastectomies. 

I had already made up my mind that I was going to just have a mastectomy because Dr. S said that after they remove my breast, they will be able to pop an implant in while I’m still under.  That way, I won’t have to deal with what I like to call “The Uni-Boob Effect”.  Of course, when they do the mastectomy they will remove my nipple as well, so I will have to go back to the plastic surgeon for a series of procedures where they will construct and tattoo a new nipple.  Sounds nice, eh?  I can’t wait to for someone to ask me if I have any tattoos. 

“Yes, I do,” I’ll say. 

“Well, what’s it of?” they’ll ask. 

“A nipple.” 

Silence.

But, I digress.  All this talk about my nipple made me go off on a tangent.  Where was I?  Oh yes.  Michael has been worried sick.  Just as he was starting to go over the deep end, his friend from Mackinac Island, Jack called.  Jack put Michael in touch with a friend of his who is a Doctor of Oncology at Northwestern Medical School.  She is an extremely gracious person who spoke to Michael at 10:30PM about my diagnosis.  As soon as he read the pathology report to her, she interrupted him and asked, “How big is her tumor?” 

“About 3 inches, ” Michael replied. 

Incredulous, she stated: “Michael, you need to get her to another doctor right away.  I don’t know of any oncologist in the country that wouldn’t start Karen on chemo right away!  Surgery should come later.”

She then asked Michael to read Dr. S’s business card to her.  It stated that he was a “General Surgeon”. 

“He’s a General Surgeon?  That means that he does things like remove appendixes.  Call his office and find out how many mastectomies he has done.  If the answer isn’t ‘hundreds and hundreds’ I wouldn’t even consider him.  Karen really needs to see a Surgical Oncologist.  A Surgical Oncologist removes tumors.  I would get away from Dr. S if I were you!”

Michael called the surgeon’s office the following day and asked his chief nurse how many mastectomies the doctor had performed.  She hesitated a moment and then replied “a few.”

I guess it’s time to find a new surgeon…and fast.

It just so happens that the world famous Mayo Clinic has a facility in Scottsdale, Arizona, about 40 minutes from my home.  My husband absolutely insisted that I get, what he considers to be, the best medical care available.  He called our insurance company and they said that we were technically covered, but for the Mayo Clinic, there is a $10,000 deductible, plus you have to pay for any diagnostic work out of pocket.”

Basically, she made me feel like we were crazy for making this insurance choice.  My husband doesn’t care.  His response:  ”I have an American Express Platinum, a Bank of America card with a $36,000 limit, and an AT&T Universal card with a $20,000 limit.  I’ll bankrupt us if I have to.” 

I know that he really doesn’t want to file bankruptcy, so I reminded him of the high interest rates.  The response:  A.) “We’ll find a way and money isn’t important right now” and B.) “I don’t give a shit Karen!  You are going to Mayo and that’s that.” 

The idea that our medical bills are going to max us out has my stomach in knots. 

I just got off of the phone with Mayo and scheduled an appointment to see a surgeon in the Breast Clinic.  They won’t be able to see me for 2 weeks, but I feel better about going there for treatment.  In the meanwhile, they have requested that I have my biopsy slides, mammogram films and ultrasound images sent to their facility so that they can look at them and have an idea of what’s going on with me.

I feel very fortunate that they could get me in.  When one pulls up to the hospital, there is a hotel right on campus, and tons of out-of-state license plates in the parking lot.  In other words, it’s a good hospital with great doctors. 

Although we do live about forty minutes from the Mayo Clinic now, we used to live five minutes away.  I don’t know why we didn’t think about this to begin with.

There is nothing to new to report at this time, except my cough has been getting worse and worse.  I have never had allergy / asthma problems quite this intense before!!!!  We’ve had a lot of rain this year, but still…this is ridiculous!  I can barely speak on the telephone to my clients.  Even the inhaler that I’ve been using hasn’t been working.  Maybe I’ll ask to see an allergist at the Mayo Clinic while I’m there.  I’m driving my husband crazy.

Michael:  “Why are you coughing so much???”

Me:  “Calm down.  It’s just allergy induced asthma.”

Michael:  “Is it productive?  Are you coughing up phlegm?”

Me:  “No.”

Michael:  “Are you telling me that you have an unproductive, dry, hacking cough?”

(Oh shit.  Back to grilling me like a witness on the stand.)

Me: “Yes, it is ‘dry and hacking’,” I reply cautiously.

Michael: “That’s just great.  The cancer has spread to your lungs!  Oh my God Karen- you have cancer in your lungs.  There is no reason for you to have a dry hacking cough for an entire month without any other symptoms!  No fever? No night sweats?  Are you sure there’s no phlegm?  Any phlegm at all?”

These aren’t really words of encouragement.  The guy is nuts.  Here he is, begging for phlegm.

Even if he’s right, I’m not going to acknowledge Michael because he is just too out of his mind and crazy for me to deal with.  I just can’t wait to get to the Doctor so that I prove to him that he’s wrong and needs to calm down. 

*cough, cough*.  Well, at least I’m getting a good ab workout. *cough, cough*

I met with a surgical oncologist, Dr. G, at the Mayo Clinic today.  It turns out that Mayo has a place called the Breast Center.  My husband joked that it sounds like the “best place in the whole wide world”, but it wasn’t quite as he fantasized.  You can always count on Michael to make boob jokes, even at the most inappropriate times.  He is 34, going on 17.

We arrived at the Breast Center and sat down with the doctor.  He had reviewed the mammogram images that I had sent over from the radiologist that I had seen a few weeks ago; he expressed concern with these images and asked that I have a few more tests taken at the Mayo Clinic.

Then, he examined my breast.  He made note that my nipple was beginning to invert and I had a strange dry patch on my skin, just above my areola.  He also carefully felt the lymph nodes under my armpit, as well as the lymph nodes in my neck. 

I was very taken by how capable and intelligent Dr. G seemed.  I am certain that I am in the very best hands, literally.  He was not able to tell me anything definite at this appointment; rather, he examined me and ordered some tests.  Still, it felt good to know that he wasn’t blindly rushing me into surgery like the first doctor was going to do.