My Xeloda arrived. I took my first four tablets about five minutes ago. I think I am experiencing every side effect I read about. OK, I am experiencing nothing. Except fear and dread. I know I'll be fine. I'll know I'll get better. But the unknown is driving me a bit crazy. I just started chemotherapy. I hope my lungs get better. The End.
Friday, December 21, 2012
Tuesday's Pet scan was a gas. I awoke at 7:10AM for a 7:30AM appointment. Somehow I got to Columbus Circle Imaging on time albeit, looking like a dishrag. Thirsty (no fluids before the test) and tired, I filled out my paperwork and was then escorted to meet Chris, my tech for the morning. It took two techs to poke, prod, and find a cooperative vein into which a radioactive liquid (tracer) was injected and caused a cooling sensation throughout my arm.
Chris then asked me, "So, what flavor beverage would you like?" Beverage? Are we on an airplane? No, we're in a cold, sterile basement with intimidating machines, one shaped like a donut, which is going to scan me from my head to my knees. There are no beverages served here, only chalky, creamy, gag inducing liquids with a touch of fruit flavor also known as Barium Sulphate Contrast Suspension (a contrasting agent). I chose apple. I was led to a small room with a reclining chair, a newspaper and a heater and was left to sip my vile drink while for the next 55 minutes, the tracer got absorbed into my body's organs. After successfully finishing my apple essence Elmer's-Glue-like diluted milkshake, I took a nap.
The scan was easy enough because I was not entirely enclosed in the donut; it should be tolerated well even for the severely claustrophobic. The only challenge was keeping very still for a half hour but I was strapped on to the bed rather snuggly and was able to catch another few Z's. I then got dressed, waited for my CD and was on my merry way.
Although Al Gore never mentions this, I think what ensued next might partially be responsible for global warming. Oh my goodness, the rumbling, the sounds, the explosive nature of this so called beverage really warranted some sort of warning especially while wearing a down coat, trapping the gas like a Dutch oven, and heading into work. I had so much gas in me I thought people were going to separate into odd-even lines. This lasted, hmmm, pretty much the entire day and all I can say is thank goodness a) I have my own office and b) I didn't asphyxiate myself.
Before I hit you with the results, I just want to say if you're still reading this entry, I thank for not leaving.
The following day my oncologist called with the great news that the cancer has not spread to any other vital organs! There were some things spotted here and there, however, Pet scans pick up everything, but not everything it sees is cancerous. There was one area of ever so slight concern in the mediastinum but it could've just been inflammation caused by my surgery. The only way to follow up on this will be with the next Cat scan I get after my first couple rounds of chemo.
Which brings me to the horrible experience I've been having trying to obtain the Xeloda Rx. Between my oncology nurse and myself, we must've made at least 15 phone calls circling around from one specialty pharmacy to the next only to be circled back to the first one, Optum, which said I wouldn't be covered yet in fact I am. Although I loose patience with myself easily, I always try to remain calm with others and not raise my voice for this typically never helps a situation. But throughout this ordeal I reached the point of screaming at a United/Oxford rep, "I have tumors all over my lungs and you are refusing to help me!!!" I think that got her attention. After finally placing my order with Optum I still was not convinced it would ship so the next day I followed up and the rep said, "Oh yeah, it's scheduled to ship but we can never ship before speaking with the patient." Really? What do you call what we did yesterday? Do you really think they would've called me? The prescription never would've left and I'd still be wondering where it is. Alas, it DID ship and it is now stuck somewhere in the mid-west in a UPS warehouse because of the inclement weather we were experiencing today. Delivery today has now been postponed to Monday.
It has taken exactly two business weeks to obtain a prescription and I think that is preposterous! I've already begun drafting a letter in my mind to the Commissioner of the Dept of Health (unless anyone has a better suggestion) with a cc to the CEO of my insurance company, the governor and I don't know who else. I will not let this fall on deaf ears either because there are people out there who cannot fight for themselves and probably don't get the proper care they need because the insurance companies take their sweet time in doing the very opposite of what they're supposed to do: help people!
So here I sit, typing away with Ravi Shankar in the background reminding me to chill out, the world didn't end today as planned, and to be thankful that help is on the way and I soon will be kicking cancer's ass!!
Happy Festivus for the rest of us!!
Monday, December 10, 2012
OK, we're making progress. I met with two oncologists last Friday and have decided that I will work with Dr. Keith Brunckhorst. Not only did he meet me on a day he typically does not see patients, he took my history, gave me a remarkably thorough physical and spoke with my mom and me, all within 2 1/2 hours and that's all for a $50 co-pay. Did I mention that he personally called me Friday at 8:00AM to ask me if I was able to come in AND he worked around MY schedule? Unbelievable.
Key take away points:
- My cancer is estrogen-progesterone receptor positive. Like last time, this means my hormones are fueling the cancer. The pathology report still has not come back with the HER2 report, but more than likely I will be HER2 negative. (This would be good; HER2 poz means more aggressive cancer.)
- Because my cancer is hormone related, it's considered good because I might respond well to more hormone therapy.
- That last statement begged the question, then why didn't the five years of Tamoxiphen I was on work for me, especially when I had some pretty favorable odds that I'd have no recurrence for 10 years? Well, apparently my body resisted it. More than likely the "seed" broke off from my original tumor and planted itself in my lungs years ago. Chances are that had I even gone through the chemotherapy back in 2007, I still would have had this recurrence.
- Both doctors were disinclined for me to start with a hormone therapy program in lieu of starting chemotherapy ASAP. Sometimes these hormone therapies kill the cancer on their own, however, it's too late for me to test it out. Their effectiveness would not be determined for several weeks and if they didn't work, that's weeks I would've gone without a more surefire plan.
Well, option one is fabulous. Take blahblahblah with a side of blahstuffstuff and the side effects kind of suck but may be managable. Option two is get an IV of cantpronouncethename with some whateveritscalled and the side effects get suckier. Option three is, get a port and take itjustkeepsgettingscarier with moreblahblahblah and you might go into heart failure and vomit, but you'll have no hair to pull back when your head's in the toilet and some other shitty stuff. By the way, Elizabeth, you'll probably get all of these treatments at some point during the rest of your life, we just don't know in what order.
I chose door #1. It's actually a PILL, the only chemo pill around (I think) and is called Xeloda (Zeh-low-dah) It works for three types of cancer, one being metastatic breast cancer (mBC). Remember, this is breast cancer that metastasized in the lung, it is not lung cancer. Typically it's taken twice a day after meals with water for 14 days, off for seven says, then back again for 14. Three times around is considered a full cycle. If I experience side effects, I immediately call the doctor and he will adjust the dosage. I will probably be on this medication (or some form of chemo), assuming it's working and side effects aren't horrific, indefinitely. I am not at all sure when hormone treatment gets thrown into the mix. The good news? I probably won't lose my hair and, for the moment anyway, I won't have to throw my body into menopause.
By Friday I hope to be approved for a Pet Scan. Assuming the cancer has not metastasized anywhere else in my body (start praying--yes, even you athiests), I can then proceed with the Xeloda. The Xeloda comes from some special pharmacy and I get to pay some special price, so special, the pharmaceutical company offers patients a special payment plan. Ain't that special.
Months ago when my super amazing, loving, shmoopy boyfriend, Sandy, learned I had my lumpectomy five years ago on Rosh Hashana, he said that was a bad move. I said why, I've been fine so far. Then I had my needle lung biopsy on Yom Kippur of this year, coincidentally five years to the day of my first surgery, and the results came back showing no cancer... See?? I'm fine!.. And then everything turns to shit right before Channukah. I've been pondering denouncing my religion all for the sake of my health, but when I explore my options I realize that the food isn't as good and I might start paying retail, and that just doesn't work for me either. So here I sit unwrapping gold foil chocolates and spinning dreidels asking myself, how many hours after taking my chemo and water do I have to wait before I go swimming before I get cramps? (For you gentiles, that's a Jewish joke reference.)
The biggest take away I really got is, this is not curable, it's treatable. The hope is to get rid of the tumors spreading on my lungs and prevent more from developing. I'm being treated with palliative care, a term I used to think only referred to those waiting to pass in hospice. It's slightly terrifying especially if you read a lot on line. I've decided I will no longer take advice from Dr. Web MD, but rather only those doctors that actually see me in a blue robe with the opening to the back. There is progress being made all the time and there are lots of things (e.g. diet, exercise, cut back from three to two packs a day) I can do to help fight the C -word.
When asked how I am feeling, I sometimes weep, and I cannot predict when that might happen. Ask at your own risk. I still get a bit winded from the surgery. I'm not sleeping that well but when I do, my cough subsides. The cough is a symptom of the cancer and might go away when the cancer's killed off. If I happen to cough in your presence and you have a spare cough drop, I'll take it. Just not the melted one with a hair on it that's been sitting in the bottom of your pocketbook since the Nixon era. Got some bottled water? I'll take that, too.
I will do my best to update the Boob Blog on a regular basis. Please feel free to post comments or if you want to personally catch up, text and email is best until I'm no longer chalking (choking and talking simultaneously).
Thank you everyone for your well wishes, your thoughts, your prayers, your love, kindness and compassion. I'd like to thank my agent, the Hollywood Press...............damn, wrong speech.
With love and hugs,
P.S. Thought you'd enjoy this video!
Post surgery, shopping in Wegman's with Sandy.
P.S. Thought you'd enjoy this video!
Post surgery, shopping in Wegman's with Sandy.
Wednesday, December 5, 2012
Dear friends and family,
I've sadly got to report that as of late, my health has not been at its best. What started as an annoying cough a few months ago has led to my taking several x-rays and cat scans of my lungs, eventually one needle biopsy of my right lung and then thoracic surgery on my left from which I am recovering right now. The breast cancer with which I was diagnosed in 2007 has apparently metastasized into my lungs.
I'm working with excellent doctors at Lenox Hill now and will plan to meet with one or two oncologists within the next two weeks to confirm who I will use. Yes, chemotherapy is a must (no radiation). Treatment will have to begin as soon as I am healed enough from this operation.
The course of treatments (chemo cocktail and intervals) cannot be determined until the chosen oncologist has all of the reports. Assume I'll do some sort of treatment over six or so weeks and then maintenance treatments. The latter is something new to me. The medical field is trying to treat cancer now as a chronic disease. Keeping that in mind, the goal is to get rid of whatever cancer there is and prevent it from returning. With maintenance treatments, say, once a month for a couple of years, that goal may be achieved. Again, this is based on not yet having the dr outline the protocol as well as having to see how I react to the initial chemo.
There are multiple nodules on both lungs. What the chemo should do is eliminate them. They'll be monitored to see that they shrink in size if not disappear and / or multiply. If after several treatments there are some nodules resisting the treatment, those might have to be surgically removed similar to how I had five removed this past week. The procedure is called a VATS wedge (video assisted thoracic surgery). Dr. Richard Lazzaro is a pioneer in this field and I feel blessed to have met him and will continue to work with him at Lenox Hill. It's not a fun ride, but after three days of hell, I now feel normal again.
I am a bit numb from all of this news. I knew something was going on but was believing it would be more like an infection that could be cured with some steroids. My chronic cough and results were resembling that of TB but I tested negative for that and so many other things like molds, fungus, Lyme Disease, Legionnaire Disease, etc. Although Cat scans were reading highly suspicious of metastatic cancer, I figured, I was given good odds of ten years of no recurrence from my last surgery, so it couldn't be that.
As with my last surgery I will probably update people via my blog or just email. It makes it easier to share the same information with everyone at once. Plus, my cough tends to get more persistent when I talk a lot. For a while I've been avoiding the phone at home just for that reason.
The good news in all of this is that I have the most wonderful support team. If you're receiving this, consider yourself part of that team. This week I received so much love and healing from immediate family and friends and doctors and nurses that I feel like the luckiest person in the world. There are those who suffer through this or worse with no one around them, no good resources, no money, nowhere to turn. To me, I have already conquered half the battle.
I'm sure you'll have questions, so please fire away. This is not a secret or something I am ashamed of. Like my first time around, I did as much research as possible to empower myself and in order to help others who might someday find themselves dealt these same cards.
I am hopeful, I am eternally grateful and I am prepared to beat this with flying colors.
With love and friendship,