Artemis' Silent Assault

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The arrow pierced through my chest wall unnoticed. A minor twinge that only slightly drew my attention away from the tasks at-hand. What literally dropped me to my knees was the unceremonious way in which the arrow, on its own volition, began to withdraw.

The head of the arrow must have been either larger than it initially appeared, jagged in its property, or dipped in some form of venom. Whatever the case, the pulsating burning throbs that gripped me just over my left pectoral muscle lit the entire area on fire. I tried to breathe deeply and send soothing energy to the area. To no avail. Each time I caught one deep cleansing breath the arrow tried to dislodge itself again – sending a barrage of concentrated fiery spasms.

I focused on the determination of the arrow, trying to discern its pace and pattern. I was trying to intellectualize the battle raging in my chest. As the spasms finally became less frequent and subside in intensity, I was able to unbutton the top of my blouse – curious to see if I could find the exit wound left by this unexpected assault and retreat. A prominent, raised vein was twitching across the upper pectoral, across the roundness of the breast, and was at least five inches in length.

I considered it for awhile. Reset the tempo of my breathing. Noted that the garage need a sweeping out from the prior days’ storms. Remembered, and then rescued dinner.

I did wonder, however, what I had done to piss-off Artemis?  

Questions...

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QUESTION

Hello TC,

We are trying to locate a doctor in for my daughter, and it's not easy. Do you have any suggestions on find the best MD?

We have the name of an Oncologist (a highly recommended woman doc), and thought that it was the Onco that did the surgery. Now we understand that a surgeon does the operation and the Onco handles the case afterwards. Are we correct about this?

Thanks much.


RESPONSE:

The “traditional medical team” is made up of the following:

Surgical oncologist – this person is integral in the initial stage, but a transitory person in the long haul of the journey. They are the person who your daughter will work with on determining if and if so, which sort of surgery is appropriate (e.g. lumpectomy, mastectomy, nipple-sparring, tissue-sparring, NO surgery at all). Once healed from the surgery, and margins are clean, this medical professional ceases to have a role.

The surgical oncologist, however, is the doctor you request to have the tumor and tissues sent to Genomics in California for the Oncotype DX test. If the surgical oncologist won't do it, then insist that the medical oncologist does. Don't be talked out of this test - it is the only reliable determiner available to us in the U.S. to gauge the efficacy of chemotherapy on our individual cancer. (There is a Mammaprint test available now as well. The problem, the only lab that has the patent on this is in Phoenix, and a Mammaprint can only be conducted on "fresh" from the slab tumor/tissue.) I was also told by several pathologists that the particular patent that the Phoenix lab obtained is not quite the same caliber as the one in Europe.

It is also after the surgery and the pathology analysis that she should then have her results sent to Michael Lagios, MD in Marin County for re-evaluation and adjuvant treatment recommendations. (See blog entry dated January 23, 2010.)


Medical oncologist – this is the person whom you have a life time relationship. They advise and help you determine if and what type of adjuvant treatment she will have (i.e., chemo and other drug protocols [tamoxifen, etc.])They follow you for the first year or two every 3 months, 2-5 years every six months, and thereafter annually – they follow you to track recurrence. This is the medical person that you use to determine your long term quality of life. (And, this is the person that I personally am having a tremendously difficult time in finding that fits with my perspective on my cancer. I have interviewed four so far.)


Radiation oncologist – this is the person who, if you choose to do radiation, will handle that portion of the adjuvant treatment. There are great variances in this field so interview radiation oncologist thoroughly. Ask what type of equipment they have and how they target the chest wall. Radiation can have serious side-effects ranging from skin-burning to weakening of the heart. Make sure that if you choose radiation, that you do your homework!

NO TREATMENT DECISIONS SHOULD EVER BE MADE OUT OF FEAR...! The only long term decisions that you can live with are the ones you make from a point of knowledge.

Reconstructive surgeon – (aka a plastic surgeon who specializes in reconstructive surgery). This specialization is absolutely necessary to have any sort of livable outcome. A good surgical oncologist will work with the reconstructive surgeon and allow them to determine the incisions, since they do so from a perspective of your long term, dare I say . . . aesthetic, outcome.


For me, the integral person has been my naturopathic oncologist. Not many reputable ones around, but I found the one who developed and formalized this area of alternative medicine. It is this doc, Daniel Rubin, ND FABNO, whom I am working with in developing my adjuvant treatment -- I have opted out of the traditional protocol of chemo/drugs/radiation.

Finding is a good medical oncologist is difficult. I suggest that your daughter speak to the surgical onc and get a few names of whom they work with. I would also google med oncs in your area and get names and then start looking up their medical profiles and histories. I also found that using “healthgrade.com” (it’s a paid on line service) was good in reading patient reviews of doctors. Once she has a short list, and has done her due diligence, start face-to-face interviewing – go in with her notebook and questions ready!

The most important thing to remember is that the patient needs to do the interviewing (not the other way around). The patient, is the “employer” and/or “general contractor” of her own healthcare.

TC

TC's Post...Post Script

I completely forgot to mention the involvement of a geneticist! Early on this journey, after my first interview of a prospective surgical oncologist, I met with and got tested by a geneticist. This was to help answer the WHY??? The purpose was to determine if I had any genetic predisposition toward cancer. Having no information or contact of and with my biological father in 42 years, I could not definitively say there was no family history of cancer. The answer to this question would help guide me on this journey, and help answer questions regarding my children's future. This is the testing for the BRCA1 and BRCA2 - in addition to looking at other genetic markers.

I pleased to say I passed the test -- no genetic predispositions!

If you are a women of Ashkenazim descent, there is an additional genetic screening that should be done.

QUESTION: Do Prosthetics Cause Chills? (and I am not talking just about visually!!!!!)

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Since my second round of reconstructive surgery on December 11, my body temp is all over the place! Even now, I run a fluctuating daily low-grade temp (99 -101.1). No, it is not related to the reconstruction per se. I have been checked out twice for possible infection. I have been advised that it is likely that the temperature is related to my body's post-surgical healing process. That's cool (nah...not really).

The question I cannot find an answer to, as yet, is: is it possible that my new prosthetics are the cause of my chronic feeling of being cold? I am experiencing a biting, right down to the bone, coldness. Recall, I live in Arizona. It is 74 degrees today! The coldness actually emanates from my breast area and then sweeps my entire body. This occurs in hourly waives! My youngest is quite amused. Being a frenetic 8 year old boy his body temp is always a toasty 150 degrees +/- fahrenheit! He bounces around me and encourages me to place my icy hands on his neck and belly -- which then sends him into throes of laughter.

Now THAT is cool!

Med-Pros Revisited . . .

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For the record...

I never meant to imply that ALL (or even ANY) med-pros are evil, per se. I have never meant to imply that the med-pros that I have been personally dealing with are themselves evil. My personal experiences do not reflect a general banality of evil in the medical profession, but rather, I believe, a critical flaw in the manner in which our medical system is run in this country. (I say, in this country because I am not familiar enough with the medical politics of other country's health care systems (although I have been a patient in a few). My personal experiences have informed me that the "flaw" in the U.S. medical system is that the profit margin of pharmaceutical companies have far too much influence upon the education and training in our medical schools, as well as our "regulatory" government agencies (i.e., FDA). I also believe that med-pros who think "outside of the pharma box" are penalized if not ostracized, because of their potentiality in negatively impacting pharma's bottom-line.

My first medical onc - Kato, was the most pleasant man. I truly enjoyed our conversations. When push came to shove...meaning when I pushed him outside of his comfort zone, his "world weariness" kicked in and he became ineffectual for me. He could only offer me the cookie-cutter approach -- which was confirmed (and he acknowledged) would have little to no effect on my breast cancer and lots of harm. His "medical tool box" was severely limited.

Dr. Lise Walker, my surgical onc for the mastectomy, was more than competent (and had a good beside manner). If and when I have to consider a mastectomy on the right breast, I would go to her again. She was also instrumental on my "quest" to look beyond the prix fixe menu of adjuvant treatment as it was on her office shelf that I was introduced to "What Your Doctor May NOT Tell You About Breast Cancer" by John R. Lee, M.D.

Dr. Coral Quiet -- the radiation onc whom I consulted numerous times and whom I too pushed outside of her comfort zone -- when pushed, gave me the name of Dr. Michael Lagios - a consulting pathologist and head of the breast cancer center at Stanford Medical Center. Lagios was integral in my decision not to pursue conventional adjuvant treatment.

Dr. Bryan Gawley - reconstructive surgeon. . . well, as I wrote on his holiday card: "All the king's horses and all the king's men couldn't put Humpty Dumpty together again; but Bryan and his nurse Brenna certainly could!" (Though I still look in the mirror and feel that a black teased hair-style with white bolt streaks on the sides would be more fitting for my new "look.")

Except for the one nurse who unnecessarily assaulted me with a catheter when I was being prepped for surgery this last time (she was stressed that I had not peed for a pregnancy test, and felt that I was unable to waive the test as I had been given a "happy" injection into my IV already) I have not had one single complaint to blog about with regard to the plethora of nurses that have assisted me. I have always known that if you want the true scoop on an individual doctor, get to know the nurses in their practice. It was Oz's belligerent treatment of his own nurse, as well as the general malaise of his entire nursing staff, that solidified my truly negative impressions of him.

Indeed, I do not even view "Oz" as evil. Pompous, arrogant, rude, belligerent, bastard, ass-hole definitely. Evil, no.

"Evil" requires a certain malicious intelligence. And, fortunately, I have not come across any med-pro whose IQ leans in that direction.

"Kenzu" Knives Make a Comeback!

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Another slice 'n dice session with the surgeon this past Friday. This time it involved both "ladies." And the only thing pithy that comes to mind is OUCH! But this time, I brought it on myself.

They tell you in the user-friendly post-op literature that "come the second day after surgery the 'discomfort' [euphemism for PAIN] will be such that you may be rethinking your decision to have opted for reconstructive surgery. Do not worry, this feeling will pass." Well, they were almost on the money.

I was actually rethinking this whole decision two weeks prior to offering myself up to the surgical slab. And I was DEFINITELY having second thoughts as I was dry-heaving for a solid 36 hours after surgery (a parting gift from my kindly anesthesiologist).

In the days and weeks leading up to cutting day, the image of the one-breasted Amazon was looking more and more attractive. And it wasn't just about nerves. To be truthful, I was not looking forward to ye ole surgical experience again. There is no upside to surgery, aside from compelled convalescence (a Type A+++ lawyer's definition of vacation). More so, it was the realization that my body will never truly be the same again. I do not mean "the same" as in my body "is not the same as before having 3 kids"; or my body "is not the same because the irony of age has grabbed ahold." I am talking about, not being the same because of a permanent premeditated alteration. I don't know how the "It People" so easily venture down the cosmetic surgery route time and time again (Cher? Demi? Joan?)-- I find the whole concept disturbing on too many levels.

When preparing for the total mastectomy, people tried to discuss with me the "mourning" I would feel for the loss of my breast. I never felt that loss. Frankly, I thought the whole "mourning the cancerous boobie thing" ridiculous. My breast had to go because it had been perverted with a malignancy caused by the environment in which we live. That amputation was just another decision on life's path. The perversion had to be excised if I wanted to be at my 17 year old daughter's high school graduation. No-brainer.

This time, the surgical decision was a decision made out of vanity. My vanity. And that is disturbing to me. I could have easily embraced my Amazonian persona. I could have gotten a really cool tattoo -- a la Phoenix rising from the ashes sort of thing. Though, I have been threatening to get a lotus tat instead of an areola tat all along.

Instead, I sit here second-guessing the foundation of my confidence. I should be doing "life" things, like planning a ski trip or training for the P.F.Chang Rock n Roll Marathon. Or figuring out to have a Cosmopolitan with an old new-found friend. Instead, I bought into the Cosmo version of beauty. Somebody should have slapped me - hard.

I sit here tonight feeling like maybe that a greater crime than having my body betray me with cancer, is me betraying my body with a conventional delusion of "beauty."

How morbidly hypocritical.