(Forgive the cut and paste, but I wanted to share my email of tonight to my fellow terminal breast cancer patients with you)
Hello sisters!
I've made a huge decision and want to share it with you. I've decided to stop conventional treatment. Tomorrow I stop taking Tamoxifen. I also started using natural progesterone cream again, against the advice of ALL of my doctors.
Here is why. In late 1998 I discovered a pea-sized lump in my right breast. I had a mammogram and a fine needle aspirate biopsy. They told me it was nothing to worry about, so I didn't. Last year I saw the 2 path reports for the biopsy, and it wasn't "nothing". It was atypical and the reports recommended follow up. That's another long and hellish story.
In 1999, I became aware of Dr. John Lee's books "What Your Doctor May Not Tell You About Menapause", and ".....About Premenapause". I bought them, along with a tube of natural progesterone cream (I'm gonna call it NP from here on), and within 100 pages I'd decided to give it a try. I had been suffering debilitating endometriosis (they offered Depo-Provera, Lupron, or Hysterectomy), ovarian cysts, painful, lumpy, fibroid breasts on menstruation, extremely heavy bleeding and clotting, cramping, periods lasting 10 days or more, breakthrough bleeding, homicidal PMS, and on/off depression and infertility.
Within 4 days of using the recommended 15-20 mg of NP daily, the endometrial pain disappeared (never to return), and within 2 menstrual cycles, I was having periods that lasted 4-5 days with little or PMS, no cramping, no clotting, and only mildly sore breasts. The depression went away, I had no more ovarian cysts. Literally every single female malady I'd suffered for years came to an abrupt end. Within 3 1/2 months I was pregnant (big surprise!) It's questionable how soon I could have become pregnant as my partner and I were geographically separated. I became pregnant within 3-4 of our reunion in Ireland.
I continued to use NP on/off from 1999 until late 2003. Within just a few months (March 2004) that pea-sized lump began to grow aggressively, and by July of 2004, it was 5 cm, and during a routine lumpectomy, I was dx with borderline Stage IV ILC. After over 2 years of conflicting opinion, it's been determined that I was metastatic at the time.
Of course, I was terrified that I had somehow caused my cancer by the use of the NP. I was reassured by all my doctors that it was more likely it had slowed progression. However, because I am ER/PR+, they have all advised me not to resume the use of NP cream. My gut tells me different. Since my dx, I have scoured the net, and questioned every doctor as to available studies regarding the effect of NP on breast cancer. I've inquired here, and every other site I could find. Apparently there have been no large, double-blind studies in this area. There are however, many smaller studies that show that estrogen, unopposed by progesterone, poses a huge cancer risk.
I recently bought Dr. John Lee's newest book "What Your Doctor.....About Breast Cancer". Talk about a page turner. If anyone of you has read it, I'd love to discuss it!! If you haven't read it, I urge you too. It is an eye-opening look at the breast cancer research industry, as well as a hard look at conventional treatments (chemo/radiation/hormonals/aromatase inhibitors/etc). Again, within 100 pages or so, I was back to the local health food store to buy some natural progesterone. I started it on 4 days ago. And upon rereading some pertinent chapters of Dr. Lee's book, I've decided to discontinue Tamoxifen. Bone scans from July and October of last year (I'm waiting on results from January 07) show slight increase in tumor size and the development of a new tumor. There are only 3 bone mets detected so far, and they are small (7 mm - 1 cm). Because of this, my onc team wants to switch me to Arimidex and Zometa. I did all the prerequisite tests, and am just waiting to hear from my onc. I've decided against the treatment she's recommended. Arimidex is prescribed for POST menapausal women with EARLY stage cancer. I am PRE menapausal with LATE stage cancer. What are we doing?
I have lost so much faith in the system, and truly believe that the butchery, poisoning, and burning of our bodies is being done simply because nothing else has been researched thoroughly (because there's no motivation for anyone to pay for it) and that cure and survival statistics are so convoluted and skewed as to be completely unreliable. I feel like a victim, that I'm negligently uninformed, and left without options, led blindly and terrified down a path of treatment that they know is ineffectual, and permanently damaging to our bodies. It literally makes me sick to my stomach to know that the medical "industry" (because let's face it, that's what it is) knows what causes cancer, knows how to prevent it, yet bows apathetically and lackadaisically to the pharmaceutical giants.
I anxiously (and I mean VERY anxiously) await the results from my upcoming scans in April. If they are better, or even the same, I will continue this treatment of NP, (with some critical lifestyle and diet changes aimed at improving the health of my immune system, endocrine system, etc.). I will also seriously consider foregoing the quarterly or even semi-annual radiation blasts we are led to believe do us little or no harm and that the "benefits outweigh the risks".
I welcome any and all feedback, ass-chewing, and discussion. I am afraid. I am terribly afraid to walk away from what I've been told is my only chance at some sort of long term survival, but my gut is screaming at me. It's been screaming at me for almost 3 years through this process, and it's just time for me to stop.
She was diagnosed 12 years ago, went metastatic 9 years ago. That's incredible. She was a long-liver. I was diagnosed almost 2 1/2 years ago, metastatic 4 months ago. I can't help but think that best case scenario, I only have 8 1/2 years left to suffer.
Fuck.
I'm gonna go smoke lots of pot, and drink wine, with Pat in mind.
Some things, when they happen, after it's over, make you feel sorta sick. You know that whatever you do, you need to move the shitty energy right out of you. Or you stay feeling sick.
Carlan was upstairs, getting ready for a bath...or a shower; he's old enough that it's his choice. We did discuss "shower safety" again, though, because showers are kinda new for a slippery 6 year old. Mom was upstairs in her room. She's not been feeling well lately; a bit of a head and chest thing, the same that's going around everywhere. She hasn't eaten properly in at least two days and this has been going on for at least a couple of months this time, and for at least a couple of decades in general. She has been drinking though to some degree almost every night for weeks. And getting weaker.
I hear loud crashing thuds. My gut dropped and I bolted out of my room, through the kitchen and up the stairs, by 3's....really in a matter of seconds. The sound only means one thing; one of them has fallen hard. Carlan screams for me....really screams...but it's a terrified scream, not a scream of pain. Literally, in one second, I think "he's hurt, no, he's scared...mom's hurt, no, please, please not mom, it's Carlan, but he's okay...because he could scream....fuck it's my mom.
She is laying prone in the middle of the upstairs hallway, her head barely lifted, and bobbing slightly...she doesn't respond to me, but she's conscious. Carlan starts to cry, and I send him for the phone. She still doesn't respond and seems disoriented, strokelike and attempts to move, but can't.
I have never shaken so badly in my life, and I'm shaking now...
911. "My mother's fallen and she's just out of a halo after 7 months from a serious neck fracture"...we do the 911 dialogue, and then I hear mom saying quietly, "what...what?" "I didn't fall....I didn't fall...I'm okay"....still with her head barely raised from the ground. Like the victim of a car wreck stumbling around in the street looking for their car keys but missing a limb...my son is almost in hysterics.
I can't do this anymore.
Against my pleadings, she got up. She sat up, then stood up, still disoriented, and walked into her room. Sat down on the bed.
It's 6 hours later now. She's apparently fine. My son thought she was dying. He wrote to Santa and Mrs. Clause tonight "My grammy is very hurt; I am very sad", and said, "I am not going to let this happen; I am not going to let go of my grammy, this is not going to happen again". A burden too heavy.
I told my mother tonight that I knew my disease had progressed because of the incredible stress of her accident in February. That I knew, within hours, that I would have a recurrance, or progression. I told her about the utter breakdown I experienced. And then I underwent two surgeries.
I am no prophet, but my intuition speaks to me, as it does all of us. When you are injured, you know...if you listen. And my body is screaming at me, has been screaming...
And I think tonight I felt, and feel, for the first time, truly...that I am hanging on, and have been...by very thin threads, and that those threads are fragile, and weak....and all I have.
I want to feel some peace....of soul, of mind, of body....and some rest. To rise and feel rested. To feel safe, safe to my core...just for a few moments. It's been so long really.. This business of dealing with it. It's cumbersome...laborious.
I volunteer every other Thursday at Carlan's school for a couple of hours. While correcting papers this morning, I noticed that one very bright, young girl in my first reading comp group (we'll call her Aurora, because that's her name) had drawn and written nearly 4 times the work of her peers, so I was moved to read out of curiosity. Six pages of "wanting to get up", being told "no", of vampires, and liars, and holding signs to make friends, and dancing, and cages, and mean moms....I feel one can only absorb so much intensely negative energy, but I also know that we are where we are supposed to be at any given time. Do I lack humility so much as to say I believe I've begun to learn the meaning of suffering?
My body aches to breath without restriction and pain...my wounds are deep and lasting. My smiles have becomes winces. I am biding time...and it hurts.
I don't want to hear anymore, be strong, stay positive, fight hard...because to assume I've done anything else is offensive, insulting, and implies there's something more I could do...be more hopefull, have more faith, count my blessings, smell the roses...
Faith remains each day that I am here, hope is not living today, my blessings cannot be counted, and I tire of the smell of roses...
I'm remiss. I suck at blogging. I either think of what I want to write at 2 a.m. while tossing and turning, or I'm awash with feelings of dread at the thought of it. I guess it's not supposed to be easy otherwise I wouldn't get anything out of it.
A few weeks ago, I noticed a spot on my calf. It just looked like dry skin, maybe from the winter weather, so I start slathering on the lotion. Didn't help. Then I got a small spot on my jawline...just more dry skin I thought. Then I got a spot on my back, up by my shoulder, and another on my chest. Jesus, fuck...I'm thinking this is breast cancer metastases to the skin. My doc gives me some special salve, and then hits one of the spots with liquid nitrogen, suspecting cancer. Neither does any good. The dermatologist immediately burned two spots with nitrogen and did a biopsy of another. Results came back benign, so I guess I'm relieved, except that I haven't had reliable diagnosis in over two years. No one can tell me what the deal is with these spots...lot of guesswork. I'm thinking my immune system is permanently fucked.
I saw my plastics doc today. Good thing. I really fucked myself up at the Alice In Chains show in Seattle. Wound opened up again. Hurts like hell. Ribs are also in bad shape. I kinda forgot I'm a fracture risk from all the radiation. Pretty stupid. Somehow made me feel like I was normal for a little while hugging the rail, like the old days. Doc takes one look today and schedules surgery ..5. We're trying a whole new procedure this time, since the last failed. I'm excited and relieved to finally be doing it, but scared it's gonna fail too. It's a really invasive surgery, and I'll be in hospital for a week they say. I've been nursing wounds for the last 2 years. I didn't think there was that much gauze in the world.
I've been researching more about my particular type of cancer, and apparently lobular breast cancer often doesn't respond as well to chemotherapies, which would explain the failure of first line treatment, but that we tend to live longer than others. Or die slower.
We lost 2 wonderful ladies this week from my group.
Wednesday last I headed up to the hospital to give blood...not sure why, I just do what they tell me, when they tell me...unless, of course, if it interferes with a good rock show. Then I tell them to pack sand and reschedule. That's how I retain some level of control.
At 8:30 the next morning, my father and I went to see my oncologist. She was hurried, out of breath, trying to keep up...that's okay. I put that aside and keep her as long as I want, time to answer all my questions. Oncology appointments shouldn't be hurried. Last October is when I got a new onc; and I guess I'll get yet another before long. I guess if this disease is outlasting interns, that's a good thing? Does "too many cooks in kitchen" really apply after all?
She sent me upstairs for an Xray of my arm...wow...it's been years since I've had "just" xrays; they really are kinda boring, and they don't show a whole lot but at least they're fast. She called the next day to say that indeed, the tumor looked to be "about" 1 cm...but now they can't tell if it's actually in the humerus or the scapula. And the xray doesn't explain the pain I'm having. Hmmmm....how do you see something but yet not know where it is? This has got to be the most elusive, baffling disease...off I go for another MRI.
I also showed her some suspicious spots here and there on my skin which are of great concern (to me at least) in that they may be metastases to the skin. Well, here's my thoughts on skin mets; they came from somewhere, inside, and they've logically got to be attached to something, if nothing else but an endless string of cancer cells. None of the spots (sans 1) is responding even slightly to the topical "anti" whatevers I was prescribed by my PCP. And now I have 3 more spots. My intuition is absolutely screaming at me. So, off I go to the dermatologist.
And, overall, since there has been some progression of the disease overall, off I go to give more blood...check the 'ol Tumor Markers...sounds like something I picked up in the school supply section for the boy's backpack...
And, my friend Ron...who committed suiced just a week ago. I'm not sure if I feel envy, admiration, or sadness. There certainly is something to be said for free will and choice. RIP.
I'm starting to feel more pain, more often and the reality of what this disease is going to do to my body is starting to hit me hard. And I haven't even begun. The online breast cancer metastases group I joined is made up of the strongest group of women I've ever met, and is absolutely where I need to be, but their stories are scaring the shit out of me. I try to be mindful that these are their stories, but somewhere in each one I find myself thinking, "jesus, this is gonna happen to me"...I haven't experienced shit yet compared to what's ahead. Try as I might, part of me is sitting here, waiting for it...talk about impending fucking doom!
Everyday more and more women join, coming to the group filled with fear and confusion around their initial diagnosis, and damn near everyday we lose someone. Some of these women have suffered and endured treatment after treatment after treatment, for years, eeking out months, or just weeks, in between...getting just well enough to see their grandchildren born, or their children married, or go on that one last cruise. The prospect of this kind of life is terrifying to me. Every possible treatment complication and side effect has been described in such detail I already know how it's gonna feel. I find it very difficult to be hopeful in the face of this. To know that my body is gonna start to completely fall apart and fail me. The pain, the medications, the tests, the treatments, more pain, more sickness, more treatment, more tests...
I want to live...but I don't want to live like this. I don't want to be part of this fucking group. I am not brave and strong like everyone thinks. I find myself wishing I'd just get hit by that truck. Oh, merciful truck.
Today is Chris' birthday. He is 22. I miss him terribly and sometimes want to ask him to come back home. He is struggling so, and I can't help him. I can't hug him. His roommate's mother is dying too. I hope the two boys can help each other. There is so much I want to do for him, and I feel terribly ashamed of the time I wasted as a young mother. Some say if they had it do over again they wouldn't change a thing. I would. I would change a lot. I think it's shitty we don't have the wisdom necessary to live right when we need it...knowing later just makes you feel like shit.
I love you Christopher, and I'm sorry. I miss you, and I'm so very very proud of you. Happy Birthday Tiver.
1:38 AM - 3 CTs, 2 quarts of barium, and a bone scan to top it all off..
I treated myself to salmon again last night, the 4th night in a row. I knew I'd have to fast. So, I woke this morning at 5:30 and began gulping copious quantities of barium; on the hour for 4 hours til I thought I'd either vomit or shit my pants. The intensity of fecal urgency is somewhere between a colonoscopy prep and an enima. But you gotta hold tight, otherwise, you just gotta drink more fucking barium. Needless to say, the hour and a half drive to the hospital was...well...a pain in the ass.
At 8:30, I'm laying prone, half-naked, with an IV hangin' out of my arm ready to dose me with iodine contrast. Sounds toxic, probably is, and the physical effect is one of instant hot flash at the back of the neck, an indescribable metallic taste in your mouth, and a hot flush that so rapidly hits your groin you think you're gonna piss your pants and pass out. They ask you if you're okay, but it doesn't matter, cause it happens so fast, you're not even able to figure out what just happened, let alone whether you dug it or not. And then another run through the machine.
A second radiologist comes in, and before I know it, he's flushed the IV, and dumped a load of radioactive contrast into my veins. "See you at 1:00", he says. Who the fuck was that, and what? Oh, one more time through the machine.
This is my um-teenth time through this procedure mind you, but today I walked out in tears and fell into the comforting arms of my perfectly overweight female radiology tech. She doesn't need to ask what's wrong, and before we get to my changing room, I've pulled myself back together.
These are the days that kick their way through my wall of denial.
From 10:30 til 1:00 I try to figure out how to kill time. How the fuck do you kill time in a hospital, especially a VA hospital. Where the doctors, and the patients, and the cafeteria workers all look the same. Where half the people wandering around are missing at least one body part, myself included. I guess I do belong after all. We all smile at each other as we pass, sizing one another up...Army, Navy, Air Force, Marine? WWI, WWII, Vietnam, Desert Storm? Amputee? Colostomy bag? Section 8? It's pouring down rain outside.
1:00: back on the table, strapped in cause they don't trust me to hold my hands still. Try to hold perfectly still for 23 minutes. It sucks. Drugs would've helped.
Days like this, I don't even feel like my body is my own anymore.
I have developed quite an attachment to warmed blankets though. I'm looking into having a warming oven put in here at the house. It really is the only thing that makes it tolerable.
Days like this, all I can think about is cancer. I notice every ad for every cancer drug in every magazine. I notice every single pink fucking ribbon. I notice every bald woman wearing that special smile.
The radiologist, Bob (yeah, we're getting close like that) let me check out my scans afterwards. I always have to pretend that I'm just oohing and aahing about the technology and not really looking to close at the images, cause I might give it away that I know what I'm looking for, and he's not allowed to talk about that stuff. The tumors in my hip and leg are faithfully present again, and the tumor in my arm lights up like the fucking north star this time. It's a new tumor but it's already as big or bigger than the other ones I've had for 2 years. Again I try to hide my interest and concern; smiling, I thank him for "letting me look", like I'm on a field trip or something. I don't even mention the second "north star" I see in the middle of my spine. But it's all I can think about on the hour and a half drive home alone. It's raining, and I don't really notice. I don't have the radio on, and I don't notice that either. I'm just consumed for every minute of the entire ride, with thoughts of cancer, and dying, and how I will die, and how I was before, and how beautiful my body was, and every step of the process that's brought me to where I am today.
For the first time in a long time, I allow myself to think of what's been done to my body. Not the cancer. The cancer "clean-up". Four surgeries, all failures. Failure to "get it all" in the first place, and failure to put humpty-dumpty back together again with some semblence of a female anatomy. But that is fodder for another blog. And my head hurts. And I miss my dog.
Costello died last Thursday. I took him to the ER the night before and his condition was dire. He was suffering acute anemia. A blood transfusion and close to a $1K might have kept him through the night, but it just didn't seem right, and it was likely he would die alone, in a cage, hooked up to a bunch of crap, scared, confused, and wondering what the hell was going on. I almost bit though, I literally had my credit card on the counter. In a moment of merciful clarity, though, I decided to bring him home.
I literally drug and heaved his 70 lb body from the car to his bed next to mine, where he collapsed. At my insistance, he managed one last obligatory lap of water. I covered him with a blanket because he was shivering, and, lacking anything else to do to help him, put Joey Bear next to his head.
Mom checked him after a bit, and strangely, he'd put one paw and his chin over the little stuffy, totally out of character for the boy, and we took a picture. He looked weak, but not in pain; somehow peaceful and comforted.
Later that night, I kissed him and told him goodnight, then crawled into bed. Three times I got up and held him and kissed him some more, and told him how special he was and had always been to me. I thanked him for helping to detect my disease and saving my life. I crawled back in bed for the last time. I fell asleep repeating over and over, "I love you, Costello, I love you."
In the morning, he lay there next to my bed, the same as every morning for the last 11 years, only he wasn't breathing, and was stiff with rigor. I immediately flashed back to finding my cat frozen in the driveway on my way to school. I picked Carlan up at the bus stop, gave him the terrible news, then sat with him as he petted Costello, touching every part of his body, processing what death really meant. We cried and held each other for what seemed like hours.
A few friends came over, and we dug the hole. It was a beautiful sunny crisp fall morning. We lit the firepit outside and all stood around it til dusk, when we finally layed him to rest. Carlan decorated the marker with drawings of everyone who was there, with hearts, with smiles, and finally, with a face streaming with tears. I gave him one last kiss and covered his face with my favorite Alice In Chains hankerchief. I was so proud when he picked up a shovel and together we covered the boy.
Rest In Peace my lovely Boy Dog, my Mellow Costello.
