Thirteen Years In the Cancer Doomsday Clock (or: Cancer 24/7)

 its been almost three years since i wrote anything here.  With the advent of smart phones I think I have written the equivalent of the number of words in the Press and Sun Bulletin minus the ads which means very little  - and all of it on ten or so journals I keep writing in and then forgetting I've written in them. I hate how my once agile brain cannot seem to do much of anything that requires concentration.  I say this and yet I have restarted my 40 minute a day mediation in the morning and perhaps the fact that I am writing something with focused intent means I am benefitting.

Snake oil, Lorenzo’s oil, oil dependence help me I’m a victim of my culture

New Year’s Eve day I saw the surgeon Manghouri who I like very much. He looks me in the eye, pauses and waits for answers – yes, he asks me questions! After hearing that there was a likely problem with doing a lumpectomy because of its closeness to the surface and proximity to my nipple I have decided to suggest he not try and “save” the breast. I also asked him what he thought of a bilateral and he suggested I think about it, make sure the insurance will pay for it, and that he would support this decision.

I always write things backwards – so, first things first. What was found: He says the tumor is about an inch in diameter and therefore puts it at stage 2 although he adds that could change once someone lays eyes on the thing.

I said it was my intention to avoid chemotherapy and I don’t think this is what he was expecting. He didn’t argue although he later said he was surprised that I said I didn’t want chemo. He asks that I meet with an oncologist to go over the options. When the nurse asked if I had a preference about an oncologist I said, “I’d like them to be approachable, experienced and with some understanding of what alternative therapies are out there”, she looked a little panicked. Virginia who went with me said she also looked upset when I said I wanted a bilateral mastectomy. Virginia’s theory is she a survivor.

Speaking of survivors, I now look at anyone who limps, looks a little gaunt and conclude they are survivors. It’s very strange to see the world through this new filter. Virginia said that that period leading up to knowing how serious a cancer I have (which will continue for a long time – more about that later) must be like someone who has been accused of murder and sits in jail waiting for the trial, waiting to see what kind of evidence has been collected.

The criminal comparison– alleged criminal – whether guilty or innocent resonates. I have either been angry for much of my life and not expressing it, or angry and expressing it too freely, or, I’ve been too melancholy, or poisoned by my thoughts or the thoughts of others, slovenly for not caring for my body, the list of charges goes on.

I am ripe pickin’s for anyone who says they have the answer. And everyone has the answer and they’re pretty possessive and territorial about their answers. If I really thought I’d found a cure for something cancer related I’d give the answer away, not make it into a 12cd set in a collectable box that doubles as a coffee table object de art. That’s just me. You know… the one who gives too much and therefore has developed cancer.

Wow. I am angry!

It comes and goes – everything does.

cancer returns for curtain call

well 8 years later and it appears cancer will be my new and all consuming hobby.'stage iv - bone mets even in my fucking skull.

January 21st or so is when I had the MRI and got the call back from Fort MD that :It doesn't look good." Following week I saw the oncologist Harris.  Started conventional western treatment asp as the cancer was in nearly every bone in my body (this was not shared with me initially - I had to ask). My sister feels guilty because she encouraged me not to consider the survival statistics the other oncologist gave me if i did not have chemo back in 2009.  I get it.  I feel stupid.  I ma have 4 years or likely less to live and I may have contribute to my early demise.  Who am I kidding I know I did,  I have been unhappy and for the last 3 or 4 years been drinking a lot and aware it was king me - my soul, n=my body - and here I sit.

My apologies if anyone is hanging on the edge of their seat to know what has been happening. Good stuff mostly - very good stuff. I got the results of the bone scan and CT Scan and both were negative. The estrogen receptor status in positive which means I have some antihormone options. And my cancer was not agressive. My oncologist who as she left the exam room several appointments back said "It's all rather more an art than a science" is, however, recommending chemotherapy because there were three tumors and because of my age. I asked her for, and received,a statistical analysis which suggested my chances of survival after 5 years were somewhat improved if I chose chemo. However, as my sister reminded me when this was all first unfolding, statistics capture some of the people some of the time. So, after much deliberation and research and trying to key into my intuition I have decided to not have chemo. I am going for a second opinion at Sloane Kettering ( the former director of which once publicly stated that chemo therpay is by and large quackery which only has efficacy for three types of cancer - none of which is breast cancer) to reassure myself that although I will probably not do what they are also likely to recommend, I will hear very little else that might persuade me that I am making a mistake. I am also interested in hearing what they say about the antihormone treatment with Tamoxifen but am currently disinclined to do this as there are also significant side-effects.

The healing progresses and I am getting accustomed to this new physical reality. I don't see the surgeon again for 6 months and he declares me healed! Work is ok if carzy with academic infighting, territoriality and other less than enlightened behavior but I am on the periphery mostly and intentionally.


I don't anticipate using this blog much longer as I am not making cancer my hobby but will look for other areas to tap into myself so I don't get so lost again. Oh, and contrary to the title of this post I do not have IDC Cancer - anymore! Thanks for reading!

Tomorrow's another day

I'm not entirely sure why I have dreaded writing this new entry. Maybe because I have had a major reprieve and don't want to jinx it by thinking any more about cancer. Or maybe I am just avoiding. Actually, I can't really avoid. I wish I could. Everything is better than the last time I wrote - I am less fatigued, the pain reveals itself in new layers everyday (a rib's pain hidden by a larger global pain pushes to the front today for the first time) but is somehow manageable even without any pain medication - even Tylenol. I am starting to adjust to the stiffness I feel though I am also challenging it everyday with stretches accompanied by winces. The thing that doesn't seem to be progressing is accepting the now strangeness of my body. I was unprepared for how I would feel looking at my chest - it now looks vaguely prepubescent and as if I had been attacked by a shark. For those of you contemplating your own bilateral I include a photo below. I hope I do not offend anyone, and I know there are plenty of photos on-line for the curious but this is my chest and a few of you have asked me to post the photo - the rest can look away I suppose. I know the impulse. When I thought of my medical leave I can't tell you how many things I thought i would accomplish in the time off. I am trying to play catch up in an online grad course relevant to my interest in learning communities but this is all I have been able to do. I am less tired but there is something caught in my cogs and nothing wants to move and certainly not without a lot of coaxing. I have been assured that I am doing well, that I am a great and fast healer and I try and impress the surgeon and his nurse every week with my ability to bounce back but it's really more of a ... show. I am once again having a hard time gauging the internal stuff but perhaps the general anesthetic was more general and more anesthetizing than I originally thought. Going to go to the gym today and just walk the treadmill. Juice,a salad, some homework, a little tv (god I hate myself) and bed. Tomorrow's another day.

Alls well that ends well. But what a trip.

So, from the beginning:

Day 1
go to the hospital at 6am, have already frustrated 2 phlebotomists and the anesthesiologist's nurse because I have thin deep shy veins. Finally, after the woman rapped my hand until there was a black and blue knot someone came in and got the IV in. From there to the doctor who does the sentinel node procedure - the inserting the dye part. Several burning pinches in the areola and under the imaging machine, back to the ...actually, I am realizing there are a few holes in my memory. Next thing I can remember I am in the recovery room determined to be the best patient and the one who gets to leave the soonest. Jennifer the nurse is a gum snapping type who makes the best toast in the world - though toast that is not long for this world. I am out of bed and walking to the bathroom myself after the surgery and after a while I go up to the hospital room where I expect to be one night.

I get a shot of morphine, ambien and antibiotic all at the same time and within an hour of arriving I am vomiting. My blood pressure goes down to 56 over 40 something and they are running around the room scaring the crap out of me. To get my blood pressure up they lower my head which gets me vomiting again. After four hours of vomiting I get these ridiculously painful cramps and know that I am about to start my period... They seem little concerned with this but I am beyond mortified.

Day 2
I didn't stop vomiting for about 12 hours and once I thought I might live the nurse told me I would be going into surgery again because I was clotting and the hard as a marble portion of flesh above the bandages was a result. Manghouri came in before hand and explained I ahd a rare reaction to the anticoagulant they had injected into me. By 10 pm that night I had the 2nd surgery and he explained to my relatives and friends that he had used his power washer to clean me out, replaced the 4 drains and it looked good. The bad news was that I had lost a considerable amount of blood and needed a transfusion. A wonderful nurse Cheryl who was a good mix of come on get up and poor baby.

Day 3
Sleep? No not much. probably all told 3 - 4 hours a day in drowsiness that would come and take me away for 30 minutes at a time. I am staring to realize the gravity of what my body has been through and am letting go of my pre-surgery fantasies that I will be up the following day and driving within 2 or 3 days. I am experiencing fatigue that I cannot accept so I keep trying to get up but rarely make it out of bed. Took most of the day to put two units of blood back.

Day 4
Consider trying to leave, or at least put on a show so the surgeon will ok my leaving. He is agreeable to my leaving but wonders if I could use another day. I concede.

Day 5
I'm out by 1pm

Day 6 through Day 10
Steadily stronger and skipping pain meds but nights are impossible and nausea constant until the 9th day. Done with the antibiotics, have to take iron pills for the foreseeable future and starting to tolerate the vitamins my generous brother-in-law bought a year's supply of for me.

OK, so what they found:

I am an extremely lucky woman. They found two satellite tumors near the original one but there is no evidence that there was any migration into my lymph nodes! more later...I am tired.

I'll be honest - I'm scared. I've been sick and still have this cough. I've had to call the surgeon's office every day since last week with a status report to make sure I'm getting better because they don't want to do surgery if I'm too sick. This morning I talked with the surgeon and let him know I feel fine and the sinus stuff has improved 99% but that I still have this niggling cough. I've been so worried that it will be post poned but he said it's a go unless the anesthsiologist says no tomorrow morning. Maybe another day of antibiotics will knock the sinus stuff out for once and for all. Please everyone -known and unknown, put in some good thoughts for me. My extremely accurate (she's been on about everything of import) astrological report for the month says 3 days within January 20 are the best days for medical procedures. http://www.astrologyzone.com/

The week in general has been hard. Our godson, a wonderfully sweet atttentionally challenged 22 year old has much drama going on this week and starts college today and has been most unhelpful around the house despite his many promises to do x, y and z. We both lost our tempers last night and I was reminded that when I was in my 20s I co-owned a rare book business with a woman who was in her late 30s - funny, brilliant and dying of terminal cancer. I was remembering last night my absolute obliviousness to what she was going through and her ocassional erruptions of irritability that annoyed me...I am not dying of terminal cancer and I am long enough past my thirties to know better than to expect a 20 some odd year old to understand what frankly eluded me in my 20s and eludes me now much of the time.

I have tried to make some progress with the Sedona Method and some days it's so easy to do the following, which is the basic method:

Can you let it go?
Would you let it go?
When?

Applying these questions to things that are temporary irritants or to long-standing issues has actually helped me, but between PMS, some inevitable feeling sorry for myself and my frustrated attempts to control everything - well, I have had better days. Generally, despite a hang dog tone I am essentially optimistic about the surgery and what they'll find.

If you want to play along using the Sedona Method - just keep recycling the info through asking the 3 questions until 1) you're sick of it (even then you will undoubtedly feel some relief)
2) You've been successful in letting it go. Obviously things come and go and you may find yourself dealing with the same thing next week but my personal experience is that it's less intense. So, for instance - Terrell's pounding up the stairs after I reminded him that taking the compost and recycling were things he offered to do and he shuld not say he's going to do things if he has no plan to follow through.. I had several opportunities to "let it go" but once I identified that I was playing my arguments/anger over and over again in my mind I did ask the questions. And, after feeling my brain pulled back into the fray about 6 times I let go. Going over and over a problem just reifies it as a problem - a horrible conclusions for a therapist! But, I believe this is often true. Anyway, I can let it go and I can do it now.