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.

Verklempt

I had an appointment with Klemt (as in verklempt) orthopedics Tuesday and until the moment when Sheila, the certified fitter closed a tattered green curtain separating her domain from what otherwise felt, and kinda looked like a warehouse, I had no idea what I was doing there and what orthopedic fangel exactly they were going to fit me for. Sheila is very funny though not always intentionally so...but she was a very compassionate and nice lady who had me "strip from the waste up" (5 words I am getting beyond sick of) and then had me try on a "Soft - tee" which is a glorified t-shirt (ok, a little softer) that you come home from the hospital in that has little pouches for your drains. And, wallah! when you're done with the drains you can put fiberfill boobs in - not very convincing but I suppose they'll create the right illusion. Then I was introduced to the Boob prothesis - very real feeling silicone breasts that insert in bras that my insurance company will "allow" for two - a year.

Wednesday I met my oncologist. My first question to her was "Why am I here?" and I warmed to her when she answered "I have no idea". I asked a number of times when the appointment was being set up if it wouldn't be "better" (I resisted saying "more sense") if I saw the oncologist when she could accurately stage my cancer and know if it's in my lymph nodes but was poo poohed and there thered. I like the oncologist very much. She was approachable, interjected when Virginia asked about hair loss with a very funny story about when she shaved her head for a religious ceremony and her husband bought her a very expensive wig because he insisted a bald oncologist was'nt the tone she wanted to set in her first job in India. She very clearly stated, when I asked her about Chemo Lite, that she believes she has valuable information and as an expert (not The Expert), she sees her role as giving me all the options she supports so that I may make a decision for myself. A good day all in all.

Yesterday preoperative testing where I was unnecessarily curt with a nurse who informed me that women with double mastectomies are sent the home the same day unless there is a medical reason to keep them overnight. I was appalled though I had been forwarned of this protocol, and couldn't help myself from asking "so, having both breasts surgically removed in one day doesn't meet the medically necessary criteria?". I shouldn't have - it's not her fault, but I did get the attention of another nurse who after I informed her that it was my legal right to remain in the hospital if I am not ready to go home, researched, came back and said she had contacted my surgeon and advised him of my wishes and it would probably happen. In fact, it is not my wish but the wish of everyone else who are either incensed that I should be sent home or in Virginia's case, I think afraid of the first night.

Today i have to go to my primary care doctor (she couldn't be less primary - I've seen her once for a physical) because they believe I have a sinus infection and need to go on antibiotics before the surgery. Jeez.

No internal life this week just getting through it.

Oh, my car died. It's been happening for a while but means it now. 107,000 miles on it - I know how it feels. So, throwing caution to the wind, and hedging my bets, I am in debt for a new Scion XD for the next 5 years. Don't worry, I have the life and disability insurance for it so should I die no one will be in debt. It's barcelona red and sweet to drive. The car salesman said they had not seen a car without power steering in 15 years. I didn't have air conditioning either. Now I have both and don't need to worry about the range of motion I am likely to lose for a while that would have made driving my car impossible. I hate "everything for a reason" but this is my story for this episode and I'm sticking to it.

It's official. The sky is falling...and all over the place. My friend and collaeague has one sister who just got out of the hospital after a likely bout with MRSA only for a second sister to have found a lump on her chest wall eight years after a bilateral mastectomy. Another colleague came to work after the winter break tired from keeping watch over her sister-in-law who lies in a coma after a number of brain bleeds and strokes with everyone hoping for a miracle. A friend who recently lost her mother now faces losing her brother who lives many miles away. Jesus.

The woman who had the bilateral mastectomy, though I never met her has been my hero for the last month since I was getting ritual morning stories from her sister and my friend and colleague about her heroic battle with cancer which did not include any chemo or any treatments beyond the mastectomy. I have listened with awe and hope about her coffee enemas, juicing, ozonating her water etc. I am scared for her. I am scared for me.

Have you ever had some sort of exceptional day - the day of a funeral of someone you loved, a day you heard terrible news about someone that directly impacted you, your wedding day perhaps, or any number of really important days or days when you were trying to get your head around something outside your normal realm of experience....and you had this simultaneous understanding that no one else knew, could know what you and others around you were experiencing? A sureal and lonely moment on the planet earth. I remember the first time I understood that I was 99% of the time oblivious to the suffering and the celebrations of others. I felt bad and also relieved. Now it just feels constant - this feeling of exceptional ...something. Not all good, not all bad. It seems there are a lot of us at any given moment going through these exceptional times...all unaware of the others...

My inlaws just left and I am struck with the fact that some people are really and authentically nice. Good folks. Christian, southern, struggling with all the changes that are happening around them in the world and especially in the country's decision to elect an African American as the 44th President. But, struggling and not giving into anger, cynicism. When they said "call us and we'll come up to help" I didn't flinch. I believe they would.

When my mother died July 2007 she left my brothers, sister and I orphans. I am grateful for this other family I have and although I am miles away from being able to ask someone other than Virginia to pat my head or tuck me in or do any of the myriad motherly, nurturing things women can do for other women, I think if I am starting to imagine I can ask for some things.

Anyway, this week's focus:

Doing things I don't want to do.

Unfortunately, after a brief week of hope about my employer making some arrangement for me so I could not have to take unpaid leave the word has been somberly, and with no imagination, delivered to me that staff cannot work from home. My first thought was "tell that to all the adjunct faculty that are paid crap and are absolutely expected to work at home - how otherwise would they be able to teach?". My second thought was, why are administrators so lacking in creativity and imagination and a spine? Third - Damn it! Especially since I know myself and that I wil be home for 4 weeks or so doing all the projects I outlined for the VP and Chair of my department whether I am paid or not. People have offered since I cannot access the sickbank yet to give me some of their sick time but without a memorandum of understanding it cannot happen. I guess I'm angry. and hurt. and wasting energy.

So, number 1 thing I do not want to do - go to Human Resources to sign leave papers and explore disability.

Number 2 thing - go to an appointment tomorrow to be fitted for what is called a soft-tee for women who've had a bilateral mastectomy. I am appalled squared and can't even articulate why exactly. I keep thinking of all those junior high girls who stuffed their undershirts with socks, tissues while I looked with horror at the changes in my body that required no additional emphasis.

Number 3 thing - an appointment with the oncologist on wednesday. I am not looking forward to it primarily because there is not enough information to know if chemo is going to be pushed - although the surgeon already indicated he believed that chemo would be reccomended (another clue that although he cannot know with certainty, he suspects it is in my lymph nodes?). I'm not uncomfortable with hypotheticals in general but this one is a little different... I guess I will tell her what supplements I am taking, ask what the range of protocols includes and conclude with a question about Chemo Lite and if there is such a thing. I have already decided to seek a second opinion once the surgery is done and the extent of the cancer is understood. I keep hoping that I will experience Apoptosis and my cancer cells will pack their bags like the musinex cartoon characters and just leave me the hell alone. I have so dramatically altered my diet and routine that I do believe this is in the realm of possibilities. No sugar, nor alcohol, water to the point of bursting, vitamins, Juicing, maintaining my rather unambitious exercise regimen, and the ocassional coffee enema.

Number 4 thing - Blood tests, xrays, and assorted other preoperative tests on thursday.

Number 5 thing - the ensuing surgery on the 21st that will render me breastless.

on the bright side The Eagles and the Cardinals won.

I come by my cancer honestly.

I am fighting my head off but while I was trying to eat lunch and notice all the thoughts that accompanied my masticating I heard nothing but fatalistic thoughts - thoughts I have struggled with as long as I can remember. Everybody dies, there wil al be suffereing in the world...hard to argue with the logic of these thoughts - they are after all true. Then I started thinking about the meaning of my life and wondering if I was living a meaningful life. Is caring for people one at a time and obsessing about the rest of those who are hungry, cold, scared meaningful? If this is meaningful then I am a guru.
In addition to the kind of emotional leakage described above which has been a constant throughout my life I have abused this body. I think my mother gave me a pretty good headstart with her attempts to provide balanced meals but I pretty much squandered any advantage I had by the time I was out of the house at 17.

...and before...I inhaled glue for at least 2 years in junior high and regulary fell asleep with a glue pot to my nose, was getting drunk fairly reguarly by the time I was 15. I left home to go to England where anyone could go to a pub (that's not why I went by the way). It didn't hurt that I was a mascot for American teachers in their 30s who were entertained by a drunk precocious teenager. I loved meat and ate it with little else through my mid twenties and then just stopped because of my guilt about how animals for meat are raised. I never looked back and haven't eaten meat since but rather made sugar my pyramid base with cheese and dairy next followed by alcohol (at least until my late 30s) and then topped by vegetables. Oh, and I smoked a pack a day conservatively speaking - 30 years. So, what did I expect? I guess I expected to eat, drink and be merry. And don't get me wrong I have, but what a frickin' way to end a party.

Yesterday a tough day. I'm getting a cold and all I could think was if I am cramming all these minerals, vitamins and most valuable things into my body and I'm getting sick. What will happen after surgery when my immune system will be tired not to mention if I have chemotherapy. I came home, cried, got angry when Virginia suggested I need to have at least 2 people who could come by and check on me after the surgery since she'll be teaching late 2 days a week. The idea of anyone coming by is hard for me and I suspect this is another reason why I have come by this corruption of cells honestly. Cancer needs no oxygen and I need no one. I think they are connected.

I had no idea why a blog might be useful I just knew it would. As I have given a few people I know the URL I have felt less free to just see where it takes me. I apologize to those people if this has gotten too heavy, too personal, too melodramatic or just not interesting in the ways you anticipated. For what's it's worth I think it helps that I not censor anything right now.

Over and over in my life I have found that my subconscious is three steps ahead of my conscious self.

So, what am i thinking and feeling? I guess I'll know in a couple of days when my consciousness catches up to whatever currents, rip tides and other phenomena come into view. My best guesses:

It’s hard sometimes to assess if my feelings and thoughts are a little on the melodramatic side and then I consider the reality of not having breasts in a world where they can get you a free drink ( not for many years and alas only offers from men and I am a lesbian), and the reality that I may be sick for a while...at best.

Physically I'm all over the place. I felt very good after three days of juicing only to wake up the next day feeling like someone had hijacked my will, soul and a whole bunch of other things I can't name, I just know they're gone. My side hurts and my somaticizing talents have been putting on the show - it's in my liver perhaps one voice says. No, it's in your bones -another. I read that juicing can, because it is detoxing your liver, actually make your liver hurt. This is the explanation I've decided - today - makes the most sense. I would hope my liver would shut up for a while now that I've given it its own special day topped off by a coffee enema. Used for a long time coffee enemas have been shown to help the colon and liver detoxify - ironically by getting them all hyped up. And no, if you're wondering - it does not otherwise stimulate one or for that matter the people around one. Thank the gods for Virginia's sense of adventure! And, no, one does not fart wafts of freshly brewed coffee smells. The whole thing was an enormously humbling, embarrassing and ultimately a feel-good (ultimately I say!) experience.

Psychologically I am ok. I did the best when I had some time off from work and could spend hours thinking, feeling. My first student I see at work is a survivor of brain cancer who has recently begun to worry that the cancer is coming back. My job as a therapist was perhaps more difficult that first day back and the parade of people through my office that are attempting to attend college while being hungry, homeless (2 different students), in an abusive relationship, and just plain depressed - although my bread and butter was difficult to swallow this week. Today I am in a better head. The vissictudes of this are the strangest and hardest part to get used to - I'm not complaining and I'll take the ups and downs that are starting to feel as regular as my breathing.

I work at a college and the lingo is setting in – words like retention and persistence. I am on the Retention Committee and part of thinking abut retention of students – keeping them here for the duration – means helping them persist when some of them just want to quit. I was so taken with the concept of helping people persist through a challenging time for them that I have a marquee on my computer screen that says “The intent to persist leads to persistence”. Well, it is my intention to persist and I hope that means I will persist.

Well, the anger has subsided a bit – the further I get from the computer and googling everything imaginable, the better I seem to feel. My sister sent me The Cancer Report which is helpful. I have begun to think a lot about forgiveness and my extreme internal judge that has little mercy for anyone if aroused. I have also found Going to Pieces without Falling Apart helpful for it’s normalization of emptiness and the idea that emptiness is the place to begin, a tool and not something to fill with whatever one finds at hand. I bought this book like many of my other Buddhist centered books about five years ago and now I am, of course wondering if this is when the cells started to meet and plot against me.

The most depressing things I have read so far – and probably what spread the fire that nearly burnt me down 2 days ago:

• I can have my lymph node(s) negative for cancer but it could still mean that the cancer has metastasized ( "metastasized" misspelled was caught by word check – creepy).
• If I elect to have chemo there is absolutely no guarantee that it will kill all the cancer cells. And, those that remain will be stronger, resistant to any additional chemo and…presumably angrier.

Shit.

And Piss.

I am thinking of doing coffee enemas and must hurry to the drug store so that I can give my immune system all the advance notice I can before I assault it with surgery …and…possibly chemo. Despite my anger at the people who are making money off my misfortune I have ordered the very pricey Sedona Method. It has, after all, a money back guarantee – good for up to 6 months! The humor potential here is nearly impossible to resist but resist I will as I feel that anger again creeping back.

It has now become my pattern to wake up an hour before I would normally get up for work and think, worry a bit, and catalog the things that have gotten stopped up in my soul. I think of the photo of me and remember my sister telling me I was such a sweet baby – so open. I include before and after pictures for your entertainment.

Not so fast.

Not so funny.

Something terribly wrong happened – the kinds of things that go wrong for billions of people on earth – I wasn’t held enough, I wasn’t cherished, people hurt me, I hurt people, and so on. I wish I wasn’t one of the ones to have to pay the price - there are so many of us the odds should have been in my favor.