i wish i could say I slept well the night before chemo started. at around 1 am i finally realized that no amount of relaxation, self-hypnosis or Sedona relasing was going to help me sleep when the problem was the I was STARVING1 Got up and ate and fell right to sleep. Sometimes I am not all that bright!

Speaking of diet, I have changed mine. Vegan diet was great for a detox but the result was more starch and fruit sugar in my diet. No good. The notion that "sugar feeds cancer" is oversimplified, but cancer cells have WAY more glucose receptors than normal cells and I think the evidence that a low-sugar diet and (even more importantly) a low-insulin-producing diet is key to getting and staying better. So I am eating tons of vegetables, lentils and beans, nuts and seeds, organic meats and eggs, lots of olive oil and non-trans fats, avoiding dairy, refined sugars, flour, potatoes, rice and fruit.

So, back to my first day at Camp Chemo (the nurses actually call it that.) It's great that i got the 8 am slot, so there's less time to wait and freak out. Of course, then i wai there. in the lovely waiting room at the beautiful Sloan Kettering campus in Bedminster. And wait with all the other bums unlucky enough to have cancer but lucky ebough to have insurance. When they come to get me, i am brought into cubicle 11. And then begins the fun of finding a nice big vein so they can take bllod and then run the chemo in. This whole process skeeves me out, warming my arm and tapping around, making a fist. Uggh! the first iv didn't hurt at all, which was a relief because it didn't work. they then brought in the big guns - Mary, clearly the IV rock star. She got me - and it stung and burned like crazy but worked! And everyone agreed we get me a medi-port before next time. I have thought this meant not getting stuck - no such luck, but when they stick you, it's 100% successful every time. Woohoo! So that will happen soon.

The anti-nauseal protocol is unbeleivable. you bring in scrip that they have you take an hour before, then they give you three pills, then they give you something in the IV, then I take stuff as needed, another drug 24 hours later, then 2 more over the next few days. Crazy! But i am prone to nasuea and VERY GLAD this is available now.

SO, after all that fuss, they finally can get started, running saline, the anti-emetic, then the chemo. when you are ready for the chemo, the nurse dons a special gown (yikes) and calls for a chemo check. This is the excellent procedure for another nurse to come over and verify that you are you and you are gettign the right drug. I am ALLOVER this, as a business coach I teach systems up the wazoo, and this seems like a REALLY GGOD MOMENT not to make a mistake!

So the chemo runs in and I am drinking tons of water, getting up to pee pink (from the chemo). Then they send me home. I take myslef out to lunch at Narenj for Iranian food - yummy. I have to eat often to minimize nausea - that's me, not their advice. And, by the time I drive home, I can feel IT. The toxic rush, the body's response (something is WRONG here!) So I start my hypnosis techniques to encourage it to go where its needed and NOWHERE esle in my body, and start in on the as-needed anti-nauseals and, for the moment, I am okay.

Last night I slept like a baby, waking up only once to pee and take more anti-nauseals. i woke up feeling actually FINE. Not even nauseous until I started moving around. A moment of bliss. This morning, I feel pretty darned great. They tell me the steroids will wear off today and then next 2-3 will be the toughest in the cycle. Bring it on!!!!

On a final note, THANK YOU to those of you who have said its okay for me not to be positive at all times. I am deeply grateful for that compassion. Rest assured that positive for me does not mean no emotion. On the contrary, I allow myself to be sad, angry, etc. Using my Sedona method techniques, i don't resist the feelings and they pass quickly. Then I turn my attention back to hope and things that make me feel better. I have no intention of suppressing my feelings in order to prove something to the world. Serene and positive, without denial, is the goal, and it's a hell of a lot easier than the opposite.

Love and hugs to all

Colleen

starting chemo

Tomorrow I start chemo at 8 a.m. It feels great to have the decisions made. They will not stop me from takng vitamins, so more research will need to be done on that. no time for more now - off to rehearsal for cabaret performance in two weeks.

at long last...the treatment plan

So there has been a bit of radio silence as we cope with the new recommendations from Sloan-Kettering.  So here’s the deal. Note, this blog should be skipped by anyone who doesn’t want grim and gory details or to become depressed.

I have what’s called triple-negative breast cancer, which may not be just one thing – but lots of sub-sets of things.  It tends to be aggressive and tough-to-treat.  It does respond, at least in some cases, to chemotherapy but then tends to spread and recur anyway.  Crap news.  And it has already spread beyond the local lymph nodes to those in my neck. We already knew this, but it is BAD, BAD, BAD.

My doctor wants to treat me as if I have what’s called Locally Advance Breast Cancer, even though its already beyond strictly local (I have decided to refer to it as suburbanly advanced.)  They want to give me Double-Dense AC-T treatment – four sessions, two weeks apart of Adriamycin (Doxorubin) and Cyclophosphamide combined, then 4 sessions two week apart of Taxol (Paclitaxel).  So chemo every 2 weeks for 4 months.  The day after chemo, you get an immune-boosting drug called Neulasta.  This is very effective at boosting immune response and causes bone pain, which sound like a lot of fun.  The side effects of all this are grim and terrifying.  Highlights include the no-one-avoids it fatigue, nausea (now controlled by a separated anti-emetic regime – thank GOD for that), and other lovely things such as mouth sores, early menopause and permanent heart damage.  Of, and did I mention hair loss (who the Hell cares after that list, right?)  I mean REALLY!

This enjoyable interlude of 4 months, assuming it works (should see signs in the swollen breast tissue and lymph nodes, and there will be gobs of blood work all along) will be followed by surgery, most likely mastectomy (I am recommending both sides at this point, given the way this cancer just loves to recur, but we shall see.) The radiation.

The doctor is treating me for a cure.  If all goes super-well, she thinks there is a chance I could get rid of it permanently.  So the official party line is that is what we are all gunning for.  Got it?

The major pain and suffering this weekend has been in fighting through whether to start this right away (my vote) or delay as long as I am actually feeling better and stronger, as I am now (Steve’s vote.)  I am currently treating  myself in the following manner:

1.       Following Hoffer vitamin protocol of Vitamin C, Niacin and other supplements

2.       Exposing myself naked to the UV light for a few minutes at a time, multil4 times a day, turning myself like a rotisserie chicken to avoid burning or even tanning, in order to maximize Vitamin D production (the day after I started this I got up and worked at 8-hour day after having been practically bedridden until then.)

3.       Low-sugar vegan diet (plus 1 organic egg a day)

4.       Visualization, meditation, positive thinking and lots and lots of escape reading!

5.       Walking, running, dancing and exercize when I can (have only been feeling good enough to do this in past few days.)

I’ve lost over 10 pounds, feel better than I have in a year, and my breast is definitely less swollen and painful than it was.  Today, I felt good all day, danced with wild abandon and did leg lifts and crunches to Bob Segar and went out just now and took at run with Steve.  A RUN!  I did walk some of it, but I ran hard for at least 15 minutes and felt super-strong. 

The biggest struggle we are having now is that the Sloan-Kettering folks want me to stop almost all vitamins during treatment, based on the notion that it “interferes with” the chemo.  There is actually a raging controversy over this and we are stuck in the middle.  Steve and I are impressed by clinical results with over 2000 patients helped over the years in Canada by Abram Hoffer and his colleagues that doubled survival rates by combining the two.  There is a clinic in Mexico producing cure rates double those of MSK by combining intravenous vitamin C and chemo, among other things.  I may end up there yet (no joke!)

At this point, I don’t know whether to 1.  Tell them I’m going to take vitamins anyway 2. Don’t tell them and take the vitamins any way or 3. Follow their advice, knowing I am likely to be killing myself.  This is no good. So I am taking the strategy of asking them to provide me with the evidence and explain why they have taken the position they have taken.  If they can convince me, I might be willing to try it their way, but I expect an impasse and a fight, which is NOT where I want to be putting my energy right now.

But not to end on a low note, there is much reason to be hopeful.  I am strong, young and resourceful and there is no reason not to believe I will be in the group that survives and thrives.  Not to mention all the love and support I am getting…so keep the calls and emails and comments on the blog coming!

Love, Colleen

p.s.  Join the blog – sign up for a free google account with your regular email address and they will tell you when I post via email.

Fear of the BOOK

Looks like I struck a nerve by threatening to write my “21 Stupid Things To Say to People in Trouble” book in my first post.  Of course, this book is likely to be a best-seller, so I am going to have to write it.  A friend who has two kids with special needs is collaborating with me…her contributions really add spice.  You'd be amazed....We fantasized about leaving the book lying about in conspicuous places when certain people come by, dropping it on people’s porches, etc.  In fact, we nearly peed ourselves swapping hurtful stories, transmuting them into something that feeds our feistiness and feelings of superiority. Hey, you wanna criticize me?  I've got CANCER, remember? (God, being able to play that high horse card is doing me SOME GOOD these days!) 

But, really, really, really, you need to know that the only really bad thing you can say is NOTHING.  The cruelest and stupidest response we have when someone is hurting or sick is to run away, using “I didn’t know what to say…” as an excuse for cutting and running. When it comes to sheer hurt, abandonment leaves implying that the disease might be your fault (see The Secret), or that things are worse than they seem (or better than you seem to think they are) in the dust. 

So, please, screw up, faux-pas and stumble away - just promise to stick with me.  The number and strength of a patient’s relationships correlates with better treatment outcomes.  By just being here, you may actually be saving my life.  Here, at the the center of an incredible web of support, love and good-wishes that extends, literally, around the globe, I am strong. 

And, if you end up in my book anyway, just know I’ll definitely change your name!

Yours,  Colleen

Gory details

So many of you have asked, that I wanted to give a quick summary of where I stand with treatment. If this isn't your bag, just skip this posting!

1.  Got diagnosis of Invasive Ductal Carcinoma - Stage 3+ that is not fed by Progesterone or Estrogen.  Test for whether it is responsive to Herceptin is pending.  Herceptin positive is bad = more aggressive but good = can be treated with Herceptin (which is also bad for your heart.)  If its non-responsive to all 3, its considered triple negative.  Biopsy of lymph nodes under my arm show breast cancer.  Lymph nodes in my neck then swelled - not yet biopsied.  Breast biopsy shows small mass that has already travelled.  Bone scan and CT Scans of body negative.

2.  Recommendation of first team was 2 months chemo (doing it ahead is called neojuvant) then mastectomy, then radiation, then 9 months or more of chemo.  Adriamycin and Taxotere.

3.  2nd opinion Sloan-Kettering NJ.  Surgeon thinks lumpectomy adequate but have to await oncologist.  PET Scan shows large lymph nodes in neck (duh!) which are scheduled to be biopsied next Friday - after I meet with the Oncologist on Wednesday.

4. So we are still waiting for SK team to weigh in on the staging and treatment plan.  Will let you all know.  Thanks for all the wonderful emails and calls!!!!

Is it okay to pray for strangers?

Last night, three weeks after learning I have cancer, two weeks after learning I have breast cancer, and one week after learning that I have invasive, (probably) triple-negative cancer that is already in my lymph nodes, I was getting my hair done.  I joked with Liz about the wisdom of dropping $175 on foils, color and cut when I don’t know when they want to start chemo and it all might end up falling out. 

She offered me a free promotional massage and, after I said yes, the owner called me aside.  Gently, he reminded me that I can’t because of fear of spreading.  He then suggested I come in to let them shave my head right away when I start to lose my hair (this was already my plan.)  And he told me something people have started telling me lately, which is that breast cancer is “no big deal” anymore, tough but do-able.  This is meant to be reassuring, of course, but it’s certainly not true.  In fact, I think it’s going to go into my new book “21 Stupid Things to Say to People in Trouble,” in the chapter “Minimizing Their Pain.”  I am collecting, along with tons of incredibly love, support and wisdom from others, a lot of material for the book these days!

So, after all of this, and just because it was TIME, my grief started to roll in on me.  Grief comes in waves, and a major Tsunami that has been building under the surface started to crest.  Liz came out as I was leaving and gave me a hug. I paid, added the tip and got ready to leave, all the while avoiding making eye contact with the woman behind the counter and obviously struggling not to cry.  I could feel that she wanted to say something, but she didn’t.  As I turned to leave, I caught her eye and she asked me “Is it okay to pray for strangers?” 

All I could do was nod, get to my car and let the flood gates open.  Such an odd question, isn’t it?  She was, in effect, asking my permission to care about me, even though she doesn’t know me.  Who would need permission for that, yet I felt the caring and humility, the delicacy, to use an old-fashioned word, in her question.  A bit of delicacy and compassion in a vulgar reality-TV world goes a long way when you are holding body and soul together with scotch tape and chewing gum.  I am grateful.