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Sunday, August 31, 2014

Neuplasta and you: Prepare for the suck!

Well, good ole water was not enough for me to avoid dehydration (aka, one of the dreaded D's"). Switched to G2 this round and it has been better. Blech, just got Neuplasta shot and dreading the bone pain. Took a Claritin, Tylenol, and Xanax. Hope it works!  I just read that it can explode your spleen sometimes. OK then.

Feeling upset today and unhappy. Had 2nd chemo Friday. It is only 32 days ago from my diagnosis. Going to go cry now. Still seems like it is happening to someone else....

Friday, August 29, 2014

Tearing out my the most literal sense

Packing up the cooler right now, Mike is wondering what they serve today for breakfast. It is at outpatient hospital, and the food is weirdly delicious. 

Oh, hair. Mine is all gone now, down to skull. Had to shave it twice due to lovely patchy fallout. I have a bad moment, when it falls out in huge clumps during a walk around the block. As the lovely, expensively treated hair falls on the ground, I begin laughing my ass off. Mike is horrified and begs me to stop, but I cannot. It's! 

Later on I will understand that I perhaps was in shock and barely holding on. My hair was my thing, along with my breasts, which for now at least are still attached, although deadly and zero fun. I find that if I wear a baseball hat when out, no one notices. I think wigs are not for me, too hot here, but may try some out. 

Thursday, August 28, 2014

Perjeta shooters with Herceptin chaser

Sighs. Starting round 2 of chemo tomorrow. My cocktail includes Perjeta and it's fucking delicious! Haha. My hair is a distant memory.
Loaded up on Gatorade, ice-pops and easy to prep/digest foods this time, have been fired from my job so no work concerns. Downloaded fun games and a Kill Cancer playlist on Ipad too.  Keeping busy as possible, cleaning and organizing house and selling my work clothes on Ebay. Been walking and meditating. I am ready.

Monday, August 25, 2014

The Worst Birthday Present Ever

Happy 47th Birthday! Oh, and you have an aggressive and invasive breast cancer. You must be medically poisoned, surgically altered and radiated. It may halt the cancer in its tracks, or not. It's going to be horrific at worst and bad at best, for an entire year. You will absolutely be left with lifelong complications, the nature and severity of which we can't say. That vacation you were going on in a few weeks? Cancel it and live or go and maybe risk a chance of quicker death. 
Yeah, my 2014 birthday sucked. 

Thank God for shock. It really is an underrated, marvelous thing. I will run on it for months on end. That and my own sense of pissed-off at the bad luck cast upon me. Oh, and Xanax. 

There is absolutely nothing, nothing, nothing that compares to being told you have cancer. To have this deadly diagnosis so rudely thrust upon me makes me stubborn to fuck it back by beating it. I decide immediately, no matter what, that I am now Funny Cancer Bitch. No way am I going to let it get to that one small thing that has always saved me. I will not allow this to take my laughter. 

Thursday, August 21, 2014

And now my hair is falling out

All my hair is falling out. I shall be shaving it this weekend. Here at the house, hubby buzzcuts his military style all the time, and will do the honors. Day 13. Right on schedule! Whatevah, I am tired of dreading it. I actually used to wear it sort of buzzcutt myself, but 20 years ago. Sighs. What is old is new again! I have a wig and a cute hat, but it is literally hot as hell here in Fla. now and so...baldy mccueball shall be born with pride! And sunscreen. Off to onco tomorrow.

Saturday, August 16, 2014

Diary entry, 08.16.14-The Brochures really aren't sufficient

Got those printed brochure handouts of chemo horrors and side effects. ugh. 

Today is okay, felt normal this am and actually was able to clean and do laundry, and grocery shop a little. Now I am bushed. I tried some Neosporin gel on qtips for my nostrils. It is working some gel for psoriasis, for my chest rash and that is good too, though the rash is nearly gone. I have shamefully given up on super healthy food this week, am going to comfort food, so I m a bad girl. No energy to cut and chop!  

Friday, August 15, 2014

Diary entry 08/15/14-Metal mouth

This is day 6 post chemo. Each day is an adventure. Today is metal taste day, yum! Also, raw mucuous membrane day and diarrhea day. Damn. I was doing so well....meanwhile the fatigue continues. Well, not to complain but I want to complain.

Thursday, August 14, 2014

My onco says...

My onco says that my drippy, slightly bloody nose and raw throat, and digestive issues are from the irritation to those membranes from the chemo. Not serious, but really uncomfortable. Took a Tylenol, some Imodium, saline spray to nose and all better now! I missed that warning that this may happen so was just surprised. I am learning from here to drink lots of Gatorade during and after chemo helps as does sucking ice during infusions, and will do that next time. I am doing all the tips next time to minimize the SE. It is saving my sanity. I get dose 2 on 8/29. Telling myself do not be scared, the actual infusions were a breeze, it's after that sucks.

Monday, August 11, 2014

Day 3 after first tx...sliding down the scale of suck!

Day 3 hit me rough today. Awful itchy rash on chest, went to doc, it is a drug reaction.  Red red and benadryl barely does anything. Well, I went to a home remedy of frozen gel packs,  and soooooo much better now!   Also, body aches and already with the chemo brain, super bad. Worked, but I have to quit or go part time. My boss says he will do whatever I want....lay me off so I can get unemployment, Or go part time. There is no way I can work full time, no way. How do people do that?  Good news for me is pain meds are working, so bone pain fine now....thought I had it made.....learning NOT to be cocky.

Sunday, August 10, 2014

About 2 days after 1st Chemo. The pharmacy student says take the anti-nausea meds BEFORE it starts. Zofran is its name. It tastes like lemon and melt under the tongue 2x a day. Otherwise, I felt it capped a cauldron of sick. I may have issues with this. It was not as scary as I envisioned.

Diary entry of 08.10.14

Had first chemo yesterday, 4 different infusions! I slept like a baby, and get the Neuplasta shot in the am. Going to try Claritin as directed by onco. Feel tired and sore from port still, but got a cute short haircut today and a wig and a beanie. Feel like I climbed Everest! My start date was 8/8. 

Only 5 more to tumors are pissed, they are getting shooting pains that I lik to consider death throes. Now at home in pj's, chilling out, eating small meals, drinking water, taking care to be grateful for all I have. It is so much easier somehow mentally to begin. Diagnosis, testing and waiting sucked.

Hoping for residual power

Florida Cancer is smack downtown, occupying what used to be a beautiful church. I remember it being built and wondering why anyone would build a cancer center in such a gorgeous place. It seems sinful, but maybe it's a hallowed ground thing.

The irony strikes me as I go through all the now already familiar cancer patient paperwork rituals. I get a name tag and sit.

It's a Monday and the waiting area is filled with people, tons of them, all loaded with various cancers. A man about 20, quietly texting.  A young black woman, beautiful and bald but sporting an incredible head scarf resplendent with glitter. Old men and women. Middle-aged men and women. Sadly, teenagers. The place is packed and business is good.

Dr. Silver has something else besides the Tina Fey thing going for her. You NEVER have to wait to see her. She is never late. It's quite refreshing, and if the situation were different, I'd be very pleased. We meet Marti, her bubbly nurse first. She weighs me in full view of my husband, the first time in a long line of visits where he now becomes privy to all my secrets. There is nothing I can hide now.  Onto the exam room where Marti hands me a paper top, which comes from a pile of about 100 in the cabinet. Surely there can't be that much breast cancer that they need to keep all those right there?

Saturday, August 9, 2014

I prefer port wine vs. the kind going into my jugular

My chemo port is installed within 7 days of my diagnosis. There's many tests one must do before beginning chemo. 3D mammogram. Ultrasound biopsy. MRI. Bone Scan. All to determine if there it has spread beyond the lymph nodes and breast. It's exhausting and anxiety provoking.

The port surgery goes fine. I'm all prepped with the Mikester by my side when Dr. Nora sticks his handsome face in the room just to say hello prior to surgery. There's a new edge to him - all business and serious. I like it.

I wake up with a lump on my left chest, just below my collarbone. It's covered with many layers of dressing and is very sore. Chemo begins tomorrow.

Friday, August 8, 2014

First chemo, last notion of normal

My very first chemo is on a Friday.  On Sunday, I will tell my boss that I've had worse hangovers and to expect me at work. I have some shit brained notion of being able to work at my full capacity all through treatment. It lasts about 48 hours.

It's simple, really. Insert needle into port, deliver cocktails. At first, it will take 6 hours or more. It is due to all the separate infusions and the need to ensure I do not go into cardiac arrest or otherwise die the first few times. I also get anti-nausea drugs (Zofran) and a steroid, along with Carboplatin, Taxotere, Perjeta and Herceptin. 

Carboplatin and Taxotere are for any little scoundrel cancer cells that may be in circulation systemically.  There really is no way to convey the mixed emotions when seeing your nurse double glove, mask and gown up when handling sealed containers of these two drugs, then only to put them in your jugular.  I wanted to cower while simultaneously thrusting out my chest to receive them.  

The Herceptin and Perjeta are for my specific HER2 positive cancer.  In short, they stop the proliferation. Cancer can't handle their party-busting ways. Together, they really kick ass. I feel grateful to have them in my veins, terrified about them turning on me.  My port is very tender and the needles hurt.

My nurses are Donna and Marisel. Donna has decades of experience and gets all the newbies. We love her instantly because she takes all my sick jokes with hearty laughter. Marisel finishes me up, and is very methodical. She says she got into oncology nursing because her auntie died from breast cancer. She is warm and caring.

I must return Sunday for a Neuplasta injection, to help my white blood cells rebound from the killer drugs.  I set up my next lab draw appointment and depart. I am tired and stressed but otherwise feel normal. 

It won't get worse, right?

Tuesday, August 5, 2014

Finding Dr. Silver

Dr. Silver is my Oncologist.

She resembles a brainier Tina Fey, and dresses stylishly. Over the next year, she will always look like she is dressed for a nice luncheon with the girls, instead of trying to cure me of cancer. 

Our first meeting goes like this. I left Dr. Nora's office on Friday. He promised then to refer me over to Dr. Silver, a colleague. He did say it may take a week or so for her to get with me, as she is also a highly sought after commodity in cancer land. People say things like, she is the breast cancer guru! How did you get in with her? She is a healer!

I've spent the weekend sleepless despite the scrip for Xanax from Dr. Prakash, wondering when I'm going to die. Also, there is the small matter of my full-time, stress-filled job that I am at Monday morning when I receive a telephone call. 

It's not Dr. Silver's office, it's her. She introduces herself and asks me if I have time to come on over right now. Oh, and she says, it's not "Dr. Silver". Call me Caryn.

This is my chemo. There are many like it but this one is mine

My first chemo is preceded by a preparatory meeting with Katina, the RN.

Katina is efficient in that nurse way,  and detailed in her explanation of chemotherapy. A pharmacy student in her early 30's sits in. My chemo cocktail is broken down and each drug, its potential benefits and side effects, is discussed. 

There are lots of potential side effects, ranging from minor to life-ending.  The big ones are diarrhea and hair loss. Others include nausea, vomiting, weight gain, weight loss, nail damage, organ damage (especially heart).  Some may be irreversible. The list is massive and terrifying.

I am 46. There is no history of breast cancer in my family. I quit smoking 25 years ago. All this seems hilarious. I crack jokes about my soon to be non-existent breasts and sex life. About how I need to stock up on adult diapers and does that mean I'll be getting diaper rash too?  Soon we are laughing like old friends sharing secrets.  Katina wraps it up by handing me a stack of documents relating to chemo.

The pharmacy student walks me to the elevators and we are alone, waiting for the car.  She says she wants to tell me something. She knows that I am really scared shitless under the bravado and to keep it up. Because she felt the same way when her abusive husband used to kick her ass and tell her she was stupid.  How she never thought she would survive leaving him and only did by force of will, scared shitless herself. She graduates soon and says she will remember me.  Her last piece of advice is to take my anti-nausea meds before I feel sick, and hydrate. She pats me on the back and tells me I will be okay.

Monday, August 4, 2014

Sue the badass, Perjeta and cureable

We meet first with Sue, Dr. Silver's PA, who reminds me of my pal friend Diane, who died from lung cancer.  Short, feisty and badass.  She has a gravely voice like Diane too. She is a force. When she hugs me, she means it.  

Sue studies my chart, explains characteristics of my particular cancer, and answers questions. She examines my swollen, tumor filled right breast and lumpy armpit. She tells me, "We're gonna kick this pig. Don't worry."  

The first thing my new Oncologist does is really hug me. No fake shit either, she wraps me up and gently strokes my back and head as I break down again. No other doctor has ever hugged me and it's a bit astonishing, even given the circumstances. She is dressed beautifully and does not seem to care about my tears staining her outfit. Maybe she keeps a closet full of nice clothes, I think. She must, because this shit must happen 10 times every day to her. 

My cancer is Stage 2, perhaps slightly Stage 3. The technical name is Invasive Ductal Carcinoma, and it accounts for 80% of all breast cancers. It's just as Dr. Prakash said, invasive and aggressive. Very fast growing and already in one axillary lymph node. However, there are actually a few things in my favor. IDC is the most studied form of breast cancer. Mine is highly HER2 positive and should be very responsive to chemotherapy and Herceptin. Also, I qualify for Perjeta, which has just been rush approved by the FDA for some early stage breast cancers. Prior, it had only been available to women in Stage 4. She tells us that Perjeta "melts tumors like magic" and I begin to hope for the first time. 

She then examines my bloated breast, lymph nodes and armpit tumor. Her touch is cool, efficient and kind. She recommends chemotherapy with Herceptin and Perjeta shooters, a lumpectomy or mastectomy, and radiation. She gives all the warnings that she is supposed to - in short,  treatment may fuck me up, or worse, kill me. But the cancer will definitely kill me if I do nothing. 

Finally, she writes it down for us, in her neat hand, the year of hell to come, in a clear step by step flow chart. This is a piece of paper I will come to worship like a relic. 

Because among all the unfamiliar words and frightening interventions is one word I do understand - CURABLE. 

Saturday, August 2, 2014

There's a bad biopsy on the rise

My biopsy starts at Doctors Hospital Breast Center with a pissy-demeanored mammogram woman. 

First, she chastises us for arriving at the time we were TOLD to arrive. I tell her it was their office which gave the instruction. She wants to argue office politics, but stops in her tracks when I lean in close and say, "You know what?  I am not happy about being here either."  Maybe she can sense the lack of give a shits I have just acquired, or maybe it's my twitchy fist. Either way, she becomes nice mammogram woman.

She tells me after the super duper mammo that she has done this for 25 years and it is likely a cyst! My exuberance won't last long. The ultrasound woman is chipper and skilled. After the radiologist reviews her preliminary scan however, chipper turns to all business. There are grim faces and talk of "masses".  I stop couting after they get up to 7. Chipper warmly holds my hand and says it's good I am there and they will get me a diagnosis. My "problems" won't go away on their own.  All the use of plurals freaks me out. If not for the xanax and the fact I am already prone, it's sure I would fall down. I really hate pissy mammogram woman.

The biopsy reminds me of core drilling, because it is. The radiologist keeps priming the needle gun and it sounds just like a nail gun. He notices my terror and calms me down, says I will be numb, not to worry. I hate him too.

All the while, during the scans and prep, the radio (an old thing with enormous hemostats for an antenna), has been playing zippy tunes. I only notice it now as they numb me, which hurts like hell. Nothing feels quite like a long needle in your breast and armpit, and the pop music happily drones on.

I see the bad moon arising
I see trouble on the way
I see earthquakes and lightnin'
I see bad times today
I hear hurricanes ablowing
I know the end is coming soon
I fear rivers over flowing
I hear the voice of rage and ruin
Hope you got your things together
Hope you are quite prepared to die
Looks like we're in for nasty weather
One eye is taken for an eye


We wrap it up with Cindy Lauper and post-biopsy care instructions.  

Dear Doctors Hospital Breast Care Center:  please shitcan the radio with the 24" hemostats antenna. And pissy mammogram woman. 

Friday, August 1, 2014

The Next Year is Going to Suck

Dr. Nora is shorter than I expect. He enters the exam room still wearing scrubs and head wrap. He has soulful eyes and a sense of humor. It is easy to imagine many patients falling in love with him.

On the wall behind him hang my films from various scans. My husband tells me to stop staring but it's impossible not to. The multiple masses that my faithful mammograms missed, likely for years, are apparent.

Dr. Nora is highly regarded, experienced and specializes in oncology breast surgery. He is with the best surgical practice in town and impossible to get to without a referral. In the future, every person that asks me who my surgeon is will smile and gush upon hearing his name. They say things like, you have the best, he is amazing, you are in good hands, he saved my wife/husband/brother.

Dr. Nora patiently discusses the process. Then he says something that I am unable to fully appreciate for some time. The next year, he says, soulful eyes unblinking, is going to suck.