"What is important to you"?

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I have been hearing...and listening...to a great deal of frustration from friends and family. My cancer journey is confusing and scary for them, understandably. Equally understandable is their frustration and confusion as to my choices in treatment and management of what has now evolved into a chronic disease. I am trying to address each of those I love and care about individually. To reassure. To help them, if not understand, to at least accept. Below is a compilation of several letters that I have written to some of my loved ones. I share them here, first, because this is where I process my cancer journey. Second, because I hope that through the venue of my blog understanding and/or acceptance will come. I have to hope. WARNING: Content May Contain Concepts of Emotional Sappiness.

Dear Loved One:

I am going to start this letter with the single most important message I wish for you to take away, and that is that I love you!

Also, you need to know that you are important to me, and I am listening very closely to your concerns. I know that you are worried. I feel deeply and appreciate your concerns...truly. 

   

I know that the prevalence of pink & pretty media coverage regarding breast cancer makes it seem that great leaps and bounds in treatment options are available. I also know, from experience, that when Susan B. Komen and their ilk speak about "cures" and "awareness" they are speaking only of early stage breast cancer. That is, breast cancer that is confined to the mammary glands, and which can be "curable" but only to a certain extent. Susan G. Komen is not about advanced stage breast cancer.

My cancer was initially discovered when it was already late-stage; and is of an infiltrating / invasive nature. Remember, this was despite years of mammos misidentifying the tumor growth solely as fibrous breast tissue. When breast cancer has metastasized, i.e., moved out of the mammaries, treatment options are few and most are longshots in achieving a positive prognosis. Regardless, I have not been sitting idly. Nor, should you presume that I am acquiescing, giving in, admitting defeat, etc. to a chronic disease.

Yes, it is true that the MD community is a bit pessimistic about my situation - save, interestingly, my oncologist who is excitedly on-board with my current protocol. Well, maybe not excited per se, but at least supportive. You must trust me, I have researched and continue to research extensively my current treatment plan. The MD community (save for my oncologist) would like to go "full guns" and "aggressive beyond measure" (these words from the radiation onc). And, according to same radiation onc, going "full guns" will only give me a 20% chance at a 5 year survival. You must remember: there is a vast difference between survival and living.  

The surgical onc clearly does not want to do the surgical "full guns" and "aggressive beyond measure" surgery -- a full axillary nodal dissection. Why?  Because  it is "messy" trying to avoid all the clusters of nerves, blood vessels, and arteries. And, she acknowledges that there is no difference in the 5 year morbidity with women who have had a full axillary nodal dissection, and those who don't. She does, however, give me a 25-30% likelihood of long term nerve damage.

I cannot articulate the appreciation I feel for you own efforts in researching treatment alternatives for me. Your own stubbornness and deep caring are two of your endearing qualities. I also appreciate the emotional difficulty you are having in sharing your research findings with me. Nothing about cancer is easy. Unfortunately, your research brought nothing new or surprising. I was aware of the challenges with my prognosis. Rightly or wrongly, I did not feel that I should dump all of the "lovely" news on you in one dose. It wouldn't be fair to you or me. Why? Because I am still coming to terms with what the medical community is saying to me. I am not prepared, yet, to be a strong shoulder for you while I answer your questions. Selfish, yes. And unapologetically so. I am getting good at being selfish these days. 

As I shared with you, the radiation oncologist here in Arizona -- who, btw is touted as the "go-to radio-onc" (imagine me raising an eyebrow of doubt) was not as forthcoming as the one you communicated with. Radio onc's 20% chance of a 5 year survival was predicated on me first going through the surgical "debulking," followed by an aggressive protocol of  "clean up" with broad-based radiation of the neck, shoulders, axillary and chest wall.

I asked radio-onc how long after such intense radiation exposure would my body begin to show signs of damage to my heart and lungs (predictably leading to heart and pulmonary failure). She would not answer.

My individual situation...my reality that I have to live with, is that I must continue with life-as-is. I am fortunate that my work is something that stirs my soul, because my working is a direct and palpable benefit to my family. Family is what is important to me. Indeed my kids come first. I will never be selfish when it comes to their immediate and long term futures. Each and every decision that I have made over the last 25 years has been about family and building a life and future for my children.

I will also not allow this chronic illness to turn my family into another "recession statistic" -- funneling funds into a medical industry that holds no hope for me. I secured Husband's agreement on that one. What that means is that I will not hurt my family financially while chasing medical pipe dreams. The decisions and treatment protocols I have decided upon (with, again, the surprising support of my medical onc) are to help me manage my chronic illness and still have a quality of life with my children, now. 

I can honestly say, I am feeling better this week - week 3 of my protocol. I do "suffer" immense nausea and fatigue after the high dose vitamin c IVs, but it passes within an hour or two with the help of lime slushies.

You will have to trust me. Your trusting me is important.
The health (emotional and physical) of my children are important to me.
Making sure my children have a competitive edge and a fighting chance in this world that seems like it is being turned on its head is important to me.
Being strong for my children, while I can and when they need me now, is important to me.

Dear-heart, we are all going to die at some point, no? That is the life-cycle. It is also very possible that the cancer may not be what kills me. It is as likely that a reckless driver on the interstate, or the space debris currently falling to earth is is what causes my death. Old age may be what finally takes me. The point is, none of us know with any certainty how we will die...only that we will.  Because of a bizarre turn of events, I am "fortunate" to have (potentially) prophetic knowledge of my demise. Embracing my mortality on a daily basis does color my daily responses and perceptions. 

What is important to me is that the time I am here is spent with meaning and with as many quality moments with those that I love. Giving up sitting on the sidelines at my son's soccer practice, so I can chase a possible treatment far away from him, pales in comparison. Attending my son's concerts; making his lunch in the morning while quizzing him on science vocab or math problems; reading with him at night snuggled in his bed together -- I would never make a choice that would steal those moments away from me, now. These moments cannot be recovered, and are real now. The future, under the best of circumstances is unpredictable. 

Not being able to have my girls reach out and share with  me all of their daily joys and sorrows (18x a day -- really!) would decimate me emotionally. Being a sounding board for the volatility of their developing adult-hoods is the reward of parenthood. My girls are growing up, now.  And there is Husband. He has been my BFF and "work in progress" for 25 years now - and I have not finished with him as yet! He is not getting out of this marriage that easily, especially when he is yet to be housebroken.

Missing all of this while I am here in the moment feeling strong and relatively healthy, well, that would kill my spirit long before my body would crumble.

~TC

"Barbie" (TM) Does Breast Cancer...REALLY! (or...I have found the Pink Beast's Lair)

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Introduction:

After meeting with surgical onc on Tuesday (8/16) and then the radiation onc on Wednesday (8/17), I was sent to the new "cutting edge" breast imaging center at John C. Lincoln Breast Health & Research Center. Before any slice 'n dicing can be agreed upon, the ladies (no, not the ones affixed to my upper frame, the oncs) wanted a breast MRI on both my ladies (yes, the ones affixed to my upper frame ... with crazy glue it sometimes seems). I agreed with this. Prudent, reasonable, no major radiation exposure. Let's do it. Well, that was where sanity ended and surreal began...

I have stumbled into the lair of the Pink Beast...and its name is Barbie!


Remember all the coveted Barbie (TM) play scenes. Barbie Condo; Barbie Salon; Barbie Beach Party; Barbie Corvette; Barbie does Botox...all of Barbie's unlimited fantasy lands? If Mattel were ever to decide that since Barbie is now part of the 50+ generation she should have some "real life" experiences; and, let's give her breast cancer (think Samantha a la Sex &the City); well ... they would not be able to create a better back drop than John C. Lincoln's Breast Health & Research Center.  

Grab your barf bags!

Glowing pink pony walls grab my attention as I enter the Imaging Center. There are three intake counters divided by milk chocolate floor to ceiling panels ... and bright glowing pink pony walls. Glowing because they are opaque and lit from within the walls. Accent lighting...got it.

Next my attention is drawn to the textured creamy accent wall behind the intake clerks. It looks like they took a 15' x 20' rectangle of whipped cream cheese, and with flicks and swirls created hibiscus flower shapes, then sealed it in motion with silicone. Gracefully scripted is ... YES ... pink lettering with the Center's moniker.

Retro-pink patient chairs act as sentinels in front of the intake clerks. At least the upholstered backs match the milk chocolate wall panels. The actual waiting area has retro-60's, milk-chocolate bucket leather chairs. Yippee.

The wall-to-wall carpet is dotted with small pink, white and milk-chocolate geometric squares. I am dizzy.

Cream (oh...let's just call it white chocolate) textured wall paper has muted gold sparkle squiggles running vertically floor to ceiling.

I look up. Barbie (TM) et al did not disappoint...a large, faux crystal, retro-60s chandelier hangs in the center of this Barbie (TM)  menagerie. Mood lighting, I suppose.

As I sit with the intake clerk, I cough and politely turn my head to the left. As I do, my attention is caught by the...um...a salon (?). An ante-chamber lined with hip to ceiling shelves of head wig stands. Sadly some are bald, but even their necks (?) are adorned with the signature pink & milk-chocolate colored scarves. Really ???




Mind you, this is just the waiting room. The secured MRI room holds it own. The linoleum floor immediately draws my eye with its large neapolitan-colored s/curve (though the pink is more bubble gum than strawberry in this room).  The wannabe Barbie (TM) interior designers went retro-modern in this area and opted for geometric plasticine lighting fixtures.

The changing room has a tiny airplane-sized sink with a ruffled milk-chocolate curtain hiding the plumbing. Privacy is provided by a heavy, embossed velvet curtain that hangs just beneath the 20' ceiling. Two lockers are available for clothing - clear but pink neon "A" and "B" identifies the different locked cubies. And, yes, there is a mini chandelier illuminating this 5' by 5' dressing cubicle. The soap is cotton-candy pink. I put on the provided quilted white robe, monogrammed with the proverbial pink ribbon that serves as a flagpole for the initials, "BH&RC".

I am taken to the injection site. Detail-oriented, and consistent, their decorator was. A large milk-chocolate - the same color as the s/curve on the linoleum, LazyBoy recliner awaits behind the pink and chocolate circles-on-cream curtain. Wow, I am now so prepped for my IV and the upcoming procedure..

I lay naked, save for the thong (now the barf bag is needed!) (BTW, the thong was blue) upon the baby-pink cushions that soften (barely) the divided well, designed to separate and suspend the ladies (yes, the affixed ones) for their close-up. I place my punim on the coordinating pink gauze that covers the face holder. Pink-tiles accent the otherwise cream-colored room. I start taking long cleansing breathes to bring both my pink-induced nausea and claustrophobia under control. Tech Michelle puts on the Stones for me (you rock Michelle!) and covers me with the robe and a baby-pink blanket. I get cold really easy. Ear plugs are put on (they are orange...ugh! fashion aux pas!) - not for the Stones, but for the deafening sounds the MRI is going to envelope me in for the next 40 minutes. Extra time is allotted because I have fake ladies. (Point of clarification...I am referring to the affixed ladies here.)


Epilogue:

One last breath. Arms are positioned over head (think a slovenly clad pink Superman). Eyes are closed...Mick, Keith, Ronnie, Charlie stay with me! Okay, slide me in... I am ready for my pink ribbon close up. Oh, and yes the outside of the Research Center was marked with a 5 foot pink ribbon sculpture. I know, because I am 5'1".

Post Script:

Oh, if only Michelle, my tech, had been bestowed with equal attention to detail. I explain the difference to her between ILC and DCIS. I explain the difference between expanders and permanent implants. I explain why she cannot take my blood pressure on my mastectomy side. Why do I need to explain? She shares that she has been doing MRIs for 10 years, but breast MRIs only one. She asks me health hx questions so she knows how to proceed. (Kudos for questions, really! Glad it is not her interpreting the films, however.)  And she is trying to expand her understanding. Learning should be a life-long pursuit. Even if it is done in the lair of the Pink Beast!

P.S.S.: I guess Barbie (TM) truly is the poster-girl for plastic boobies. And we wonder WHY there is no cure????  

P.S.S. - It just gets better...I swung by the John C. Lincoln Breast Health & Research Center today, to pick up the amended MRI report as well as the CD -- [ALWAYS GET A COPY OF THE ACTUAL IMAGES, NOT JUST THE WRITTEN REPORT, WHETHER IT BE CD OR FILM. WHEN YOU GO TO THAT NECESSARY SECOND OPINION (or even first opinion with the intial doc) MAKE SURE THE DOC LOOKS AT WHAT THE RADIOLOGIST LOOKED AT - MISTAKES CAN BE AND ARE MADE WHEN ONLY ONE SET OF EYES IS DOING THE INTREPRETATION.  But I digress..]

They handed me the envelope with the CD of the MRI, with a written amended report. The envelope was off-white with bubble gum pink border and writing...and...wait for it...a 4-view diagram of women's breasts, right and left, drawn in the same bubble bum [sic] pink color. The envelope size was 11x17. It did catch the eye of more than one in the crowded elevator as I made my way back to the parking garage.

Advancing the Vocab

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S-phase Fraction

Definition: (S faze FRAK-shun) A measure of the percentage of cells in a tumor that are in the phase of the cell cycle during which DNA is synthesized. The S-phase fraction may be used with the proliferative index to give a more complete understanding of how fast a tumor is growing. See mitosis.

Proliferative Index [Synonyms: proliferation index]

Definition: A measure of the number of cells in a tumor that are dividing (proliferating). May be used with the S-phase fraction to give a more complete understanding of how fast a tumor is growing.

Mitosis

Definition: (my-TOE-sis) The process of division (mitotic activity) of somatic cells in which each daughter cell receives the same amount of DNA as the parent cell.
(Phoenix5)

Phenotype

Definition: The appearance of an individual, which results from the interaction of the person's genetic makeup and his or her environment. By contrast, the genotype is merely the genetic constitution (genome) of an individual. For example, if a child's genotype includes the gene for osteogenesis imperfecta (brittle bone disease), minimal trauma can cause fractures. The gene is the genotype, and the brittle bones themselves are the phenotype. (Medicine.Net)

Diploid

Definition: noun - (Science: genetics, cell biology)
A cell or an organism consisting of two sets of chromosomes: usually, one set from the mother and another set from the father. In a diploid state the haploid number is doubled, thus, this condition is also known as 2n. adjective - Of or pertaining to a diploid, that is a cell or an organism with two sets of chromosomes.

Supplement - An example of a cell in a diploid state is a somatic cell. In humans, the somatic cells typically contain 46 chromosomes in contrast to human haploid gametes (egg and sperm cells) that have only 23 chromosomes.  (Biology-Online.org)

Angiogenesis:

 

noun. pl. an·gi·o·gen·e·ses

The formation of new blood vessels.

• The development of blood vessels is an essential step in tumor growth.
• A tumor cannot grow larger than a fraction of an inch without a blood supply.
• Tumor cells produce or cause other cells to produce growth factors that stimulate blood vessel formation.

Angiogenesis Inhibitors:

noun ~ A drug that blocks angiogenesis in cancerous tissue, thus interfering with tumor growth or metastasis.

• Some cells produce naturally occurring inhibitors of angiogenesis.
• These inhibitors are a focus of research as possible cancer treatments.
• Several anti-angiogenesis cancer drugs are already on the market and more are being tested.
• Angiogenesis inhibitors have two main benefits as a treatment:

1. They should be less toxic than conventional chemotherapy.
2. Because they target normal cells and not the cancer cells themselves, they should be less likely to lead to the selection of drug-resistant tumors.

Metastasis

• Metastasis is the process by which cancer cells spread to distant locations in the body.
• The majority of death associated with cancer is due to the metastasis of the original tumor cells.
• Metastasizing cancer cells must secrete a mixture of digestive enzymes in order to degrade barriers.
• Cancer cells may use the circulatory system to move to a suitable location to settle.
• Metastasis is a very inefficient process. Most cancer cells die once they leave the original tumor.

Lymphatic Metastasis

• Cancer can use the lymphatic system as well as the circulatory system to metastasize.
• The movement of cancer cells via the lymphatic system into lymph nodes is used in the detection of metastatic disease and tumor staging.

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.