Saturday, October 17, 2009

Alien Being in my Boob - Part II

This month is the one year anniversary of my benign alien being's eviction. Fortunately he stayed Dr. Jekyll; never reaching Mr. Hyde status. Yet, even upon eviction this alien being had the ability of wreaking havoc on my life and making me more than a little crabby. Surprisingly, he gets to continue this course of action into the unforeseen future. It appears that Dr. Jekyll had Hyde aspirations; leaving a calling card of precancerous cells lurking in the area. Not your typical non-worrisome precancerous cells...well as non-worrisome as typical precancerous cells can be...but the over-achievers of precancerous cells.

Part of me pictures these evil little wannabe cells wearing doo-rags and black leather jackets, leaning against light poles on a street corner and smoking cigarettes; tricking my body into making trades with healthy cells for Wannabes. The other part, pictures them as nerdy evil over achievers with big black round plastic rimmed glasses, huge reference books under their noses and perfect ACT scores figuring out ways to morph into malignancy.

For those that want to get all scientific, the Wannabes were labeled atypical ductal hyperplasia (ADH). Precancerous cells on steroids. The Arnold Schwartzenegger of Wannabes. Why has over achievement continually plagued my life? The articles on ADH can make one more than a bit apprehensive. Google, with its plethora of sites, became my friend and enemy this past year. Some sites state the chances of getting breast cancer from Wannabes is 400%. Others offer no percentages, but state ADH places one at a much higher risk. Regardless, I spent the past year thinking I'm cancer free, but...

That's the difficult part. Why can't I be just cancer free? No buts. I KNOW we all have cancer cells in our body. If we nourish our body properly, our body is supposed to fight them off. I KNOW my tumor which had staked it's claim, installed plumbing, had personality and played hide and seek was evicted and benign. I KNOW all these things. But, seriously, if a surgeon evicts benign aliens from your breast, there should not be any buts.

That is where my dilemma arose. I was not trying to make mountains out of mole hills (and that is not a breast joke.) This whole year I have been torn between being extremely thankful and wondering if I am more like the spoiled kid at Christmas who did not get everything she wanted. Is it OK to be thankful yet crabby over my diagnosis? Everyone will have a different opinion. I am not ashamed to admit I want it all. Is that human nature? I want a perfect diagnosis and zero alien beings or Wannabes residing in my breasts, or any other part of my body. If you were given the choice, you would probably agree.

These questions formed my tenuous but interesting relationship with my surgeon. My guess is that we mutually consider the other to be a huge pain in the arse, or pita. Initially, he was quite considerate, now he seems more annoyed. On the Thursday after my surgery, the day my pathology report was to arrive, I waited around anxiously. No phone calls. Feeling like the wall flower waiting for her phone to ring, I finally took a deep breath and called the surgeon's office just before their office closed for the day. His nurse apologized. Dr. Pita was still in surgery and she really did not know when he would be out. She confirmed that my pathology report arrived but he needed to speak with me about it. (GULP!) She suggested that I would not hear anything until the next day. I could appreciate the explanation. How can one be crabby when he has someone else opened up on an operating table. It's not like he was out playing golf. Although I wanted to know the results, he was a bit pre-occupied at the moment and another few hours were not going to change the outcome.

Although not expecting to hear from him at all, he called me a couple of hours later because he did not want me to worry another night. No cancer was found. My alien being was duly evicted and benign. Hallelujah!! Yippee Skippee!! Praise the Lord and all that jazz!



He then explained about the Wannabes. He stated we would discuss treatment options at my surgical follow-up appointment next week. benign, yet rude, alien being was evicted, yet I still required treatment? He explained a little more about the Wannabes, mentioned Tamoxifen (the wonder drug of breast cancer patients) and then said good night. Well, now that left a million questions swimming in my brain.

Although confused, I was thrilled about zero cancer. I did not even give the Wannabes too much consideration. I was literally on a manic high. No cancer! Wow! I NEVER went to sleep that night. Not one minute. I was up the whole day Friday as well. I could not even nap. It was if there was a surge of adrenaline coursing through my veins. After being awake 41 hours and hallucinating the face of a cherub, I finally crashed at 1AM on Saturday morning.

I joked that I was fine with weekly mammograms if it meant no cancer. I kept repeating to myself, "No Cancer! I'm healthy!" Whew!

But then I about the Wannabes...and then about Tamoxifen, its side affects and other treatment options...

Armed with 3 pages of questions in my notebook, my surgeon met with me for 20 minutes at most. In layman's terms, there were some precancerous cells checking out the territory, planning a coupe, but they were evicted with the tumor. Because of those snarky Wannabes, although cancer free, the "girls" and I are now, forever and always, considered risky. Although I prefer my breasts to be thought of as risque, anyone would take risky over the "other" alternative. I am very fortunate. My incision was healing nicely. All the stitches were internal and the outside was Superglued together. Interesting. I felt a little like a cut and paste project. I have to admit, the swelling was an added benefit. Both breasts swelled and I then knew what it is like to actually be voluptuous...even if was short lived. Katrina even joked, "Welcome to my world, Mom!"

Dr. Pita and I discuss my treatment options. We will meet every 4 months for the next year. A week prior to seeing him, I will have a diagnostic mammogram (breast squashed to crepe status). Once the report is sent to him, we will meet and he will conduct an ultra sound at my visit. Oh joy! Can't wait to start scheduling the appointments! I am already mentally tabulating how much time I will take off work since neither his schedule, nor the hospital's diagnostic mammogram schedule is conducive to one working single mom. The hospital only conducts one diagnostic mammogram per day at 9:45AM Monday - Friday. He only sees patients on Monday, Wednesdays and Fridays in the morning. Well, this will become a logistical nightmare. Regardless, I'm healthy!

He then explains Tamoxifen. It truly is the wonder drug of breast cancer. Women who have breast cancer take this pill daily for 5 years and "poof" no more breast cancer. The medical field has since been treating women at high risk with Tamoxifen. The results have been quite promising. There is that high risk label again. Tamoxifen is a very cool and enticing option. It does throw you into early menopause. At 46 did I really want to throw myself into early menopause? Dr. Pita then explains the rest of the potential side affects: uterine cancer (slight risk), cataracts, deep vein thrombosis and strokes.

Can you imagine the PR spin Tamoxifen's marketing people put on this drug to convince the medical field it is the wonder drug for those at high risk? Dr. Pita informed me I am cancer free, yet he wants me to think about taking a drug that could potentially give me cancer, throw me into early menopause, give me cataracts, blood clots and a stroke. Not only would I be meeting with him on a quarterly basis, I'd be meeting my gynecologist regularly to insure Wannabes were not staging a coupe in my womb. Can you say jumping from the frying pan into the fire? At least my gynecologist has evening appointments. I decline his Tamoxifen offer. He suggests I learn more about it and we can discuss it again at my quarterly visit in January.

Can't wait!

By now, I am a nervous wreck. Dr. Pita has mentioned more than once I am high risk. He wants me on a wonder drug which scares the hell out of me. I want more answers. The other part of this nightmare that made me furious is that I wanted them to run tests on my right breast. Dr. Pita, nor the radiologist, were interested. Their reasoning was although I have been known to have pain under my right arm in the lymph node region, there wasn't a lump on that side and nothing showed up on the mammogram. Hello! McFly!! My alien being played hide and seek on my left side until you found it and it's blood supply in an ultrasound. You installed a GPS in it during the biopsy because he played hide and seek. He could have a twin alien taking up residence in my right breast. My arguments fell on deaf ears.

I followed up with my general practitioner as directed; explaining everything. I was angry and scared. I adore Dr. R. After explaining it all to him, not calmly mind you, he agreed that I should go for a diagnostic mammogram and ultrasound on my right side. Although not likely, if there was pain there could be something. He could have been appeasing me. I am sure my alternating between angry, calm and tears had nothing to do with it. Dr. R. admitted breast cancer was not his specialty. Because I had many legitimate questions about my newly appointed high risk label and Tamoxifen, he suggested I speak with an oncologist. I asked if that is what he would tell his sister rather than a high-strung patient. He reassured me that it would be the same information he would give his sister, wife, mother, etc.

It was not my intention, but my doctor dance card had never been so full. Someone mentioned that I seem to be seeing a ridiculous amount of doctors for having a benign tumor removed from my breast. She knew people with cancer that did not see as many doctors. My guess is a cancer diagnosis is cut and dry: diagnose cancer, remove cancer, treat with chemo/radiation, continue treatment until cancer is gone. Yet, that process requires many, many doctors.

My Wannabes threw me into a different category. Due to my HMO, follow-ups were required with Dr. R. Dr. Pita was required for search and seize of aliens and Wannabes. And because I had many questions about Wannabes and Tamoxifen it made sense to see an oncologist. If I jumped on the Tamoxifen band wagon then I would add my gynecologist to the already full dance card. This was not the type of popularity I wanted. Seriously, wall flower status was looking pretty good.

The choices on meeting my new oncology "dance partner" were December 24th, or January 12th. After quipping, "Nothing says Christmas like a little cancer discussion", I chose January; scheduling my diagnostic mammogram appointment a week earlier and as well as Dr. Pita's appointment immediately following. The oncologist was wonderful. He sat with me for a full hour; explaining my risks, my care, my family history which contains no breast cancer, but heavy on colon cancer and polyps. I took copious notes. Due to my family history, my oncologist states although considered high risk for breast cancer, I am even more at risk for colon cancer. Well, aren't you just the bearer of good news. As we closed the discussion he stated that I am an intelligent, well informed woman and I will make the best choice for me.

Seriously, I don't want to make any choices. Things would be much better if no choices needed to be made. My Cleopatra alter-ego, Queen of Denial, was emerging. I next meet with Dr. Pita. His first question upon walking in the room was why I had a diagnostic mammogram/ultrasound on my right AND left side. I explained. He stated that in the future he needs to conduct all ultrasounds on me. If he ever has to operate again, he needs to be the one behind the ultrasound. It took EVERYTHING I had to keep my composure. He condescendingly denied my right breast ultrasound request 3 months ago, yet he slapped my hand because I did not have him conduct the ultrasound Dr. R. ordered after my near nervous breakdown! That is when Dr. Pita confirmed his Pita status.

We again discuss Tamoxifen. I take copious notes, but explain that the drug gives me the heeby jeebies. If the Wannabes had reached Hyde status, I would definitely consider it. But by taking it now, the Wannabes could migrate to my uterus, reach Hyde status and hire additional recruits to wreak havoc on my blood, eyes and brain. Call me Crazy, but no thank you! By the time I left, we both consider the other one the biggest Pitas we have ever met.

I have friends that are pro Tamoxifen as well as con. Some swear by it others agree that it scares them as well. A family member in the medical field thinks I am crazy for not taking it. My ex-husband thinks I signed my own death sentence. If my choice turns out to be wrong, I will probably be more crabby for proving him right - but we won't think along those lines.

In April, I meet with Dr. Pita again. His next tactic is to inform me that because I refuse to take Tamoxifen I am no longer considered a preventative patient. We are now on a course for early detection. Is he trying to frighten me? It is slightly working, but I do not appreciate strong arm tactics. Again, if the Wannabes reached Hyde status, yes, I'd take the scary drug and meet with the rest of the doctors on my dance card at regular intervals. But to not have cancer and put something in my body that could cause cancer just seems ridiculous!

Now that I am considered early detection, my treatment consists of alternating between an MRI and diagnostic mammogram/ultrasound every 6 months. Just how much radiation am I putting in my body? Are we detecting cancer or are we creating it? As I leave, Dr. Pita's nurse mentions that scheduling a breast MRI can be a bit difficult, so I should start attempting to schedule it about 2 months before my next appointment. Uh...OK.

Silly, silly me. I thought it was difficult to schedule because the imaging department was so busy. I found out the real answer when I called to make my appointment. Not only do they schedule breast MRI's once a day at 10AM. A breast MRI can only be done between your 7th-14th day of your menstrual cycle. For one who is not regular (yours truly), this can be another logistical nightmare. Also, because the MRI is done with contrast, blood work needs to be done no more than 14 days prior but not less than 2 days of the procedure. You are kidding me, right?

This was now beyond a logistical nightmare...we were reaching clusterf**k status. Step one, guesstimate when my period was due. Step two, determine days 7 through 14 from guesstimate (highlight in yellow). Step three, remove all weekend dates and determine which left over days are potential days to take off from work. Step four, highlight potential days in pink. Step five, call to see if any of these dates are available. Step six, once scheduled (circled in red), count back two through fourteen days to determine blood work window. Highlight in blue. My calendar was very colorful. Step seven, pray guesstimate is correct. Prepare to call Central Scheduling if cycle does not coincide with guesstimate. The first attempt did not work well. My second attempt was juggled between vacation schedules at the office. Upon contacting Central Scheduling, they had the 12th and 14th day of my cycle open. I took the 12th. Whew!

The insanity continues. When I went for my blood work, the phlebotomist was confused by the order. While I called Dr. R.'s office to straighten everything out, she started working on another file. Once she had my correct blood work order, she started to enter it into the file on which she was working - not mine! I only caught the mistake when I realized the wrong doctor's name was on the computer screen. I questioned her. She looked quite surprised, but reassured me that my name was on the screen and pointed to the patient's name, Eileen. I reminded her my name was Mary. She was a very embarrassed phlebotomist. I called Dr. R's office a day or two later to make sure that my blood work had been completed correctly.

After my breast MRI, I met with Dr. Pita who no longer mentions Tamoxifen. We chat for all of 10 minutes. I leave with my order for a diagnostic mammogram in 6 months. Until told otherwise, this is my schedule. Whether it is a preventative program, or early detection, my plan is to remain healthy.

I am beyond fortunate that Wannabes were the only cells found. I know that. Although she is a survivor, I saw what colon cancer did to my mom. There are friends in my life currently living with cancer. Other friends are survivors. I have lost beloved friends and relatives to cancer. This is a club that I would prefer not to join. Not fond of their dues and initiation rituals. Yet the chaos that ensued this past year is the equivalent of a fun house at a carnival. Nothing is as it appears. Parts are scary. Parts are ridiculous. Conversations with doctors are akin to fun house mirrors reflecting distorted or unclear information.

I have learned more this year than I ever wanted to learn about breast cancer, Wannabes and treatments. I would have preferred living my life blissfully oblivious to their existence. I try to eat healthier. Yet reducing stress and increasing sleep continually eludes me.

The only remaining constant is I am in charge of my health care. No one else. I will make informed decisions about my treatment.

My body.

My health.

My rules.

No comments:

Post a Comment