Out of the Mouths of Babes

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Given the opportunity, children - at whatever age, are truly amazing beings. My kids excel at amazing. Last night, my 19 year old and I are sitting on her bed and I ask so what are we doing...? She lowers her chin, looks me in the eye, and flatly states: You know I am really pissed off at you!

Yeah, I know, why?

Why have you not told me your are sick again!??

...the upshot, SHE reads my blog. Who knew?

I knew I had better talk to my 21 year old. (Yeah! She is home for the weekend.) My baby has come a long way.

I had a fabulous talk with both my girls, and I learned a very important lesson, again. NEVER UNDERESTIMATE YOUR CHILDREN'S ABILITY TO HANDLE LIFE.

I love them so very much.

Time Out for a Tantrum

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I know that positive thinking is the mantra.
I know that the universe sets the kibosh on us when we ooze out negative energy into its folds.
I know that I am a grown up and should be past the tantrum stage.
But…sometimes…you…just…have…to…SCREAM! And, maybe even STOMP a foot!

In fact, I feel that I NEED to have a TANTRUM so that I can break out of the malaise that is suffocating me right now.

I have not told anyone in my family  - aside from Husband, about the new information and the choices it is now demanding.

WHY no kids? Well, my 21 year old is making us crazy with her homework and “senior” apprehensions. My usual affectionate 19 year old has become quite moody this summer, and I find that at times instead of the sensation of hugs I am wiping off disdain and sarcasm from my shoulders. My 10 year old discovered how irrelevant parental units are to his immediate universe, with his first stint at sleep-away camp. To be candid, I am afraid of how the kids are going to react. At this round, at 10 years old my son understands disease more. I am afraid that my 19 year old will distance herself more from me if she knows. (She withdrew quite a bit during round #1 in 2009.) My 21 year old, she is volatile with her emotions, and…well, her pragmatism sometimes has a bite to it.

WHY no grown siblings? My eldest sister’s birthday was this week, and she is exhausted with moving my niece into new college housing, travelling across country and satisfying every one's "need" to spend time with her. My middle sister – well, I have not been able to see her in two years and I only get her for 20 waking hours this weekend. I would rather hear about her finally being able to fulfill her dream of going back to grad school. My younger brother – I have not seen him in 7 years. I know nothing about his life these days. Hi bro, long time no see, btw… no, not cool. Besides, these siblings did not come into my life till I was 11 years old, and at times I am still feeling my around with them in defining my “role in the club.” I don't want to lay something so heavy into the mix when my membership card has yet to be laminated.

WHY no parents? Mom is very emotional and I end up reverting back to my caretaker role with her – a throw back from childhood when she and I were the sole family unit. And, today is her birthday. Happy 74^th birthday Mom…btw…nope, not going to happen.

Am I a coward? Probably. Am I being selfish? Absolutely. Having to accept everyone’s reactions, questions, demeanors – makes it all too overwhelming. I find it hard enough accepting or dealing with myself most days.

SCREAMING into the void of the virtual world? Now that is safe.

Which conjures up a random thought: If you write and nobody reads, have you actually said anything?

Think...think...think

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This round of research is more daunting than when deja vu first came calling. I am trying to educate myself on the pros & cons of the two scenarios that have been thus far presented:

Select removal of the impacted axillary lymph nodes followed up by radiation of the chest wall

or

Full axillary nodal dissection

So far nothing that gives me an understandable comparison. Most of the journal articles that I have found all conclude their findings with the impact on early stage breast cancer. I am advanced stage, metastatic (now).  And, although I "remembered", I am hit anew with the short-term objective of all studies, i.e., 5-year disease free survival.

Ah...WWPD????

Running Out of Wiggle Room?

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METASTATIC INVASIVE LOBULAR CARCINOMA TO LYMPH NODE...lab report of July 21, 2011, courtesy of Pinnacle Pathology.


(post script: the all-caps was not me being dramatic. the report actually came typed in this font.)

(p.s.s.: onc turned the phrase, "we are back at ground zero" me: "you mean like deja vu all over again?" onc, "YES, exactly")

Expanding my vocabulary

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I learned a new word today: METS and it does not pertain to the team in NY.

Deja Vu Calling...

****** The requested blah blah blah biopsy is/was for a CT-Guided Biopsy. Apparently, it is difficult to biopsy axillary nodes with a CT-Guided assist. So, now it is a go for an ultrasound guided biopsy. T-minus 15 hours and counting.

Onc showed and earned some true colors. Onc was uncomfortable with the Confident Arrogant Prick's statements to me [refer back to blog entry dated July 8]. Yes, I did share CAP's comments with her, via her sentinels. I wanted to make sure there wasn't an alternative to "being a bleeder." Onc called me personally, after-hours...no less. She wanted to confirm CAP's comments and share her alarm with me. She also called the next day after she consulted with a radiologist on her preference list - who was equally appalled, reportedly.

Upshot, I am scheduled with Preferred Radiologist for the ultrasound guided biopsy. I will miss CAP's Nurse Christy, however. She was after all, a damn good Certified Breast Patient Navigator in Breast Imaging and Cancer Care! (No kidding, it said so on the wall certificates at the imaging center.)

It has crossed my mind to ask why I did not get referred to PR initially, but deja vu is a tough enough beast to contend with without me always asking the obvious.

It is NEVER lupus!

****** Nearly four days of running tests: CTs; Laparoscopy; Ultrasounds; Scopes; Contrast CTs. Nearly four days of unsuccessful prepping for other diagnostics...unsuccessful because we discover that I am allergic to iodine and ended up spending 18 hours vomiting. No small feat since I had not eaten anything solid (only IV fluids) since the morning of May 3.  Unsuccessful because intermittent with the vomiting, I had full body convulsions when the iodine hit my bloodstream that required a crash team intervention. Unsuccessful because the pain meds that they kept pumping into my body caused blinding rebound headaches.

While discussing the inclusive results, and what courses of action were next being considered, Scottsdale Shea Attending Doc states to my health care power of attorney (a/k/a/ husband) -- in the most serious of tones...well, we know it is not lupus.

I remember pulling the pillow away from my eyes. I blinked rapidly to clear my vision so I could take a good look at Attending Doc's punim. He was serious!

Deprivation, pain, toxic shock...a combo of all of the above...I start laughing hysterically. OF COURSE IT IS NOT LUPUS...IT NEVER IS!

Two Years Notched...Post Script

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Deja vu, by its own nature will not wait for an overt action by anyone.

I was in the middle of juggling four work-related items when Nurse Christy called - her voice commanded respect with its no-nonsense crispness. Today is the day we should draw your blood for next week's biopsy. I am here till 1 p.m. Can you make it by 12:30. Do you have your prior films? I have the CD and paper report of what prompted this procedure. Please bring it with you.

Sure, I am always a push over for a crispy nurse.

I get run through the rigmarole of hospital check-in. Complete with wrist band that reminds me that I am 49 years old for only three more months.

Nurse Christy is as crisp and efficient as her vocal chords promised. You have your reports? All I have is the PetScan CD and report. I do not have the films from the alleged breast ultrasound done in March. And, to be candid, I don't know what good the March films would be - it was the PetScan that prompted the upcoming procedure.

This is going to be an ultrasound guided biopsy. We need an ultrasound. We need the pictures from an ultrasound to help locate and compare the biopsy location. I can't draw your blood unless we can see the area of concern on an ultrasound. Insurance will probably deny the charge. We need to know if an ultrasound guided biopsy is the best way to proceed.

I explain to Nurse Christy and her supervisor that the questions she raises are the same ones I raised with the scheduler. The March 2010 breast ultrasound (if it occurred...I have no memory of it) if it is available did not identify the nodes in question. Nurse Chrsity and her supervisor get this incongruous situation - on the first round. (This is not to be disparaging toward Nurse Christy...it is just that I had tried to explain this ad nauseum to the scheduler weeks ago. Its nice when there is an immediate mutual firing of synopsises.)

Nurse Christy calls my onc and within 10 minutes has orders to complete an ultrasound on the left breast and axillary nodes....right now. (I am not the only one who responds to crispness.) And...there they were...in their full pronounced glory. NODES...readily identifiable in size and activity. Oops...it appears the one of most concern is overladen with blood vessels. Need to get the radiologist in to view and determine if it is even viable to do the biopsy.

I lie there for 10 minutes (not bad in med-time) thinking about a collage of the number #2 and its related symbols.

Dr. Wall - yes, there it is. Very apparent. Squeeze your left hand (that is lying prone behind my head). There is a great deal of blood flow. It is do-able, but....hmmm....I don't know.

Excuse me Dr. Wall. You do not know what...exactly?

Sorry...I feel that I can handle working around the blood flow as it is not the main axillary artery. But I am going on vacation for 2 weeks starting today.  The other radiologist is....(the tech chimes in) ...is very conservative. She would not opt to do the procedure. Dr. Wall. Hmmm...yes, but I am confident I can, I will just ...blah-blah-blah.  You need to know, however, it is going to be a bleeder. Lot's of compression will be needed afterwards.

Whatever. Let's just do this. (I would rather have a confident arrogant prick than a conservative milk-toast -- and absolutely no political implications intended what-so-ever!)

Monday, July 25. You need to be prepared to bleed. I am presiding over two settlement conferences in the civil division that afternoon anyway. Hemorrhaging is already on the menu.

Happy Anniversary Baby...deja vu has its own time table.

Two Years Notched

****** Two years ago today I was lying on a gurney at an outpatient surgi-center. The biopsy on my left breast was being completed. The doctor was recording his findings and observations orally while he performed the procedure.

Dense; yellowish; stringy in consistency ... [gross!]

He looks down at my face and tells me he is not optimistic about what he is seeing. He says that more tests will be done, the substance drawn will be scrutinized more closely. He shares, at my prompting, that he is fairly sure that it is cancerous.

While the nurse cleans up and bandages the biopsy site she shares, without my prompting, that in the 8 years she has been working with this particular doctor, she has never known him to be wrong.

He wasn't.

The first year P.D. [Post-Diagnosis] was a roller coaster ride. Thinking back on it all feels unreal. Other times the memories of it are surreal. At all times I feel like I have chronic jet lag.

The second year P.D. was, thankfully, mostly mundane with a few annoyances.

Going into the third year P.D., I am being overwhelmed with an urgency to "clean house"; "finish the unfinished"; "tidy up" the messes made by a family of five over the last two decades. The last time I had these strong nesting urges I was pregnant.

I am not.

And these urges are more visceral.

After the insanity of this past May. The nearly month-long healing afterwards. And the PTSD-like reactions that I am still compartmentalizing, I was finally up to having my overdue PetScan. The order for the PetScan was for "restaging of breast cancer." The results: two notable areas were identified; and one area of concern prompt further diagnostics. It appears that left lymph nodes just beyond the site of the sentinel node biopsy of two years ago, that were "notable" at the last PetScan in November, have now progressed to being of concern.

What further diagnostic steps would provide the most accurate information were debated for two days between my oncologist and the radiologist who conducted the PetScan. A blah-blah-blah guided biopsy. It took onc's patient liaison three days to find a facility that could perform this blah-blah-blah guided biopsy. Ugh...sigh...only a hospital has the capability.

After the debacle in May -- the experience of which I am finding myself unable to put into written word, I had vowed never to consciously allow myself to return to a hospital. In typical passive-aggressive fashion, I have insisted that I cannot schedule this blah-blah-blah guided biopsy until a month out.

I need to give myself time to think. What would be the purpose of another procedure? Knowledge. What would I do with the knowledge? How would I make the knowledge serve me?

Th hospital tried to schedule me for today, July 8. The irony of consciously manipulating deja vu was too much to handle. I have two years notched. Deja vu can wait.



Any idiot can face a crisis - it's day to day living that wears you out  ~Anton Chekhov

Perception...

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"You are really brave. A hero"...whhaaat? Why do people feel compelled to flatter a person dealing with cancer with such ridiculous statements of admiration. Why does living with a chronic disease change the perception people have of me?

A "hero" by what measure? "Bravery" measured by what standard? I am not the spokesperson for women with breast cancer, but I think I am on safe ground saying that "bravery" and "heroism" are not the qualities we feel oozing from our emotional or psychological pores.

I am a person with a chronic disease. I chose not to curl up into a fetal position and succumb to the disease. I truly have not encountered many people who have chosen the latter. Does that make me (or them)"brave"? No, it makes us human. The will to live is not being extraordinarily human, brave or heroic. The will to live is a natural instinct. The necessities of life are a responsibility.

How we live as an adult in the present 21st century is defined by our choices and responsibilities.  I  choose to get up every morning, and I must go to work everyday. I choose to have a family and willingly undertake the daily responsibility of caring for them. I choose to continue in my volunteer work. I must pay my mortgage; go grocery shopping; clean my house and do laundry. I even choose to try and through in a little leisure time here and there. I also get pissed off at my kids and husband...and at the check out clerk, and the lawn guy...etc. In short, I am living an ordinary life. This is not heroism. My days are no different than 100 million other women...and we all have minor inconveniences we deal with daily.

Cancer does not make me "special" or elevate me in any way. It makes me human. And, as far as I can gauge, I was human before the diagnosis.

The Purgatory of Cancer

****** Being a survivor is a life sentence. There is no beginning, nor end, per se other than the inevitable we all face.

It is a matter of waiting...waiting...waiting. These are prophetic words articulated by so many of the blogs that I follow off the Being Cancer blog-os-phere network. What all these individuals dealing with caner seem to have in common is that they all opted in for the cut/slash/ and or burn protocol after being told those karma-changing words... "it's cancer.". Even my anti - pink fellow marauder, Anne, opened up her veins to the "juice." I am not making any judgment here. This is purely observation and the musings that arise therefrom.

I don't think of myself as a survivor. It seems that moniker more aptly belongs to those who have come through the horrific battleground of adjuvant treatment. Does this make me a coward? A deserter? Did I burn my draft card with my post-operative bra? Since I am not a survivor, then what I am? I experience the same immutable waiting game...waiting...waiting...for the what next. I have the same objective ... out live the odds. I crave to go back to "normalcy," i.e. pre-cancer existence where tomorrows had a boundless meaning; when day to day life did not feel internally controlled by the tolling of a time bomb; when I felt that I could outrun my own mortality by wearing my seat belt, avoiding semis on the interstate, and keeping the speedometer under 110 mph. Instead, I am neither survivor nor casualty. I am in cancer purgatory. Dante could not have conceived of a more stifling environ. Which would be fine, if I wasn't Jewish.

PTSD - The Symptoms . . . Avoidance

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By Mayo Clinic staff


Post-traumatic stress disorder (PTSD) is a mental health condition that's triggered by a terrifying event. Symptoms may include flashbacks, nightmares and severe anxiety, as well as uncontrollable thoughts about the event.

Symptoms of PTSD fall into three main categories: . . .

. . . 2. Avoidance

•Emotional "numbing," or feeling as though you don't care about anything
•Feeling detached
•Being unable to remember important aspects of the trauma
•Having a lack of interest in normal activities
•Showing less of your moods
•Avoiding places, people, or thoughts that remind you of the event

On May 3, 2011 I was admitted into the hospital via the ER. The lower abdominal pain was becoming increasingly worse. I acquiesced to a transvaginal ultrasound because my new GYN (whom I met over a bottle of champagne at a school fundraiser) emphatically impressed upon me: "you can't go on like this...we have to do something."

The procedure inflamed an onslaught of unrelenting, double-me-over-pain. I was told (as distinguished from "asked") to go to the ER. An exploratory laparoscopy was needed...STAT... BTW, what are your current markers? That was May 3rd.

At 8 p.m. on May 7, I began refusing pain meds.

At 11 p.m. on May 7 I asked my night nurse to inform the gall bladder specialist that I would not be doing the procedure scheduled for the next morning.

At 6:30 a.m. on May 8 I text messaged my husband and asked if he would mind not going to the Navajo Nation that morning, and to come and pick me up.

At 7 a.m. on May 8 my day nurse asked what had changed that I was insisting on being discharged.

At 7:-08 a.m I informed her that:  I have been off pain meds long enough to think.

By 12:30 p.m. on May 8, 2011 the attending physician agreed with my decision to be discharged.