I'm WRITING! I had a severe case of writer's block while I was waiting to see if I would survive. Now it looks like I'm going to be just fine again, albeit with more scars and a funny-shaped left butt cheek. The best part is that I can now SIT without PAIN-- anywhere. I don't want to sit around all the time and get fat or anything, but previously I could barely sit at all. So now that I can, I'm finishing the book as fast as I can and hope to have it ready for a final edit in a few weeks. Stay tuned.
There was pain. Excruciating pain. It hurt to sit, and the pain radiated down my left leg like a bad case of sciatica. A PET-CT scan had shown a 1 cm mildly metabolic nodule in my buttock, so I was sent for an MRI. The radiologist who interpreted the MRI said there was no cancerous mass, that my uterus had simply fallen into the pre-sacral space, and my oncologist took his word for it. I didn't. There had to be something more.
Over the next few months, I asked my oncologist to schedule me for bone scans to see if there was a mass in my pelvis causing deep pain. Twice, the results were negative. I distrusted those results because of the old 1970's monitor that was used to view my skeleton. There had to be something making sitting even more painful than it had remained since my first major cancer surgery.
Finally, I visited my colorectal surgeon, who obtained insurance authorization for another PET-CT. There was now a much bigger, wildly metabolic mass in that same spot (my left buttock, adjacent to the sciatic nerve), and two more in nearby locations, and five small nodules in my lungs. These were not tumors my surgeon could remove. He asked my insurance to authorize a consultation with a doctor at USC Norris Comprehensive Cancer Center, a place not in my "provider network". Ultimately, I had to drop my managed care plan, but that's another story. I searched for and found, at that very hospital, a surgeon who was a world-renowned musculoskeletal oncologist and surgeon.
I ended up with a new oncologist at Norris who, at first visit, told me statistically a person in my condition could expect to live six months, but that he could extend my life by up to six months for each of five possible chemotherapies that might be applicable based on results of genetic testing of the original tumor. When the test results came in, I was only eligible for three of the five targeted therapies.
I opted for surgery instead of the "palliative" radiation this oncologist referred me for. Previous radiation had caused far more damage than I could ever have imagined. I was determined to survive, and I was determined to see Dr. Lawrence Menendez, superhero.
The surgery was successful but for months my wound wouldn't heal properly due to severe radiation damage. I had a plethora of procedures and finally a non-cosmetic plastic surgery to get me back to the place where I can resume writing with my usual sense of humor. I'm still doing chemo, but the remaining tumors are shrinking, I'm handling the side effects well (except for the trauma of thinning hair), and I'm now finishing the book for sure... instead of cancer finishing me.
It may take a couple of months for me to get the rest of the story written and edited, but I'll be keeping you abreast of my writing and editing progress, so you'll know it's really coming along, as am I. Everyone's cancer journey is different, but I hope that by taking you along on mine, I'll help you avoid some of the pitfalls of an imperfect "system" of healthcare, imperfect doctors, and of believing that there is nothing you can do if you don't get sensible answers for symptoms that distress you. I hope you'll buy my book for yourself or a loved one who's been diagnosed, and I hope it helps you hold on to hope, chutzpah, and happiness despite disease.
Most of all, I hope you laugh. Laughter is good medicine, and we all need as much of it as we can to stay healthy and whole. Cancer is a killer, but let's not let it scare us. Okay, be scared. BUT-- Be bold, be vigilant, and demand answers when the ones you are given make no sense.
I'm not really scared shitless. In fact, I feel plenty of that substance passing into my ostomy bag right now. I'm not scared. But I am a little nervous.
The biopsy I had was to test for cervical cancer. I don't know any results yet, but I have been doing a lot of reading. I am pretty sure we skipped the step of having a PAP smear when I first came to the doctor in California. We were so worried about possible colorectal or anal cancer, that we just explored that... and of course, found cancer.
What concerns me is that, in my reading about cervical cancer, which, like anal cancer, is caused by the HPV virus, I have learned that when it is in its late stages, cervical cancer spreads to the rectum and to the ureters, potentially blocking the ureters and causing the kidneys to stop functioning.
I had a tumor in my rectum and anal canal, cancer in nearby lymph nodes, and after chemo and radiation and surgery, I had a blocked ureter. The damage was thought to have been caused by radiation damage. But I'm now worried that maybe it wasn't scar tissue from radiation that caused the blockage. What if the cancer actually began in my cervix and spread from there to the rectum and also to the ureter.
I also read a little bit about statistics... and at the stage at which my rectal cancer was found, the five year survival rate is less than 30 per cent. But I am NOT going to give way to fear. I am going to be in that 30 per cent. And if it turns out there's more cancer, well... as my youngest daughter said the other night, "we've done this dance before." I won, earlier. I'll win the next round. I am not afraid. I am not scared shitless.
I am going to survive.
As much as I wish I'd never embarked on this whole cancer trip, I wish, even more, that I could stop losing friends to cancer. A few months before my diagnosis, one of my dear friends, much younger than I, had a stroke, went to the hospital, and was diagnosed with leukemia. Within three days, the disease ripped her from her family and friends. She and her husband had a baby just a year old. Erik had three kids from a previous marriage and Kate had custody of her two from a previous marriage. She had also run an in-home daycare business for years. Suddenly, many children were left without their wonderful and much loved caregiver. My friend Erik was devastated.
When I was diagnosed, Erik was helpful to me in numerous ways, and though I balked at the idea of having chemo and radiation, and though I said I'd rather die than have a colostomy, Erik urged me to have all the life-saving treatment offered, because he'd just lost one person who was dear to him and did not want to lose another.
My friend Charles, whose wife Janeen had died tragically several years earlier, began calling me more frequently to encourage me in the cancer battle, and to tell me about his own fight with pancreatic cancer. He kept telling me that God told him he was healed. If God was talking to him, I was pretty sure the "healing" he promised would be the ultimate kind-- in which one escapes the illness by escaping the mortal body. I didn't believe he was going to be around long. He wasn't. Charles soon joined Janeen, and I lost another friend to cancer.
My friend Freda began posting updates about her struggle with breast cancer. I used to feel jealous of breast cancer patients, because it seemed to me they'd all end up with cute, perky, new, fake boobs that would never sag. True, they'd lose their hair for a while, but it would grow back, and they would look better than ever. I, on the other hand, had been permanently mutilated and would never look normal again with my clothes off. But Freda soon developed metastases to her bones and her brain. She was in a lot of pain. Eventually, she joined Charles and Janeen.
I was getting a little angry, and more than a little worried. I'd imagine, at times, that my dear, departed friends and relatives were very near, just beyond a gauzy veil, and all I'd have to do is step through it to be reunited with them forever, and separated from all who loved me on this side. The idea intrigued and terrified me, comforted and saddened me. I decided not to be in any hurry to go.
An old grammar school chum with whom I'd reconnected on Facebook suddenly died of cancer. A high school friend, also rediscovered through Facebook, sent me a couple of her wigs, having put breast cancer behind her. She recently developed pancreatic cancer, too. Hers was operable. She had to wear wigs again for a while, but now she's better. I try to keep tabs on her. With cancer, life can turn on a dime.
Another friend's brother has been "terminally ill" with cancer for ten years. I think it's taking a toll on his loved ones. People with cancer need to get that word "terminal" out of their heads, refuse to accept it, and keep on living, until we are no longer here. We must not lie around, waiting to die.
I had a biopsy, last week. Next week I'll email the doctor for the results. I don't expect it to be cancer, despite that he said some areas looked abnormal. I expect to be fine. But if I'm not fine, I expect to survive a little more of something... maybe some internal mutilation, or toxic drug therapy. I might refuse those and try something all natural, trusting the body's ability to repair itself.
I don't plan to die. I plan to live. And if I should eventually land in the place where my dad and several other friends and relatives are waiting for me, so be it. But I'm not planning to go any time soon. I have a book to finish, and screenplays to revise, and more books to write, I am too busy living to worry about dying. Everybody dies. We never can know when. We don't make an appointment for it.
I don't think you should worry about dying, either. Instead, figure out what to do while you're living. Get your nails done. Fix your hair. Have your teeth fixed. Sure, you might just be aiding the undertaker in making the corpse more attractive, but you might need those pearly choppers for another decade or several.
If you lose friends to cancer, don't let it depress and frighten you. You'll be sad, of course, and feel the loss deeply. But don't fear that you are next. You have a lot of living to do. And people need your love. They don't need your life insurance and your other assets. They need YOU. Hang around. Don't desert the ones you love. Don't stop fighting for your life. Heaven can wait. I hope to meet you there. But not any time soon. We have work to do.
So I realize it has been over a month since I posted an update. The book stalled for a few weeks while I endeavored to create a YouTube video for a client who wants to create world peace. She'll be having me revise it occasionally, so that she can promote a day of prayer for worldwide peace next year.
It was a challenge because we come from widely divergent backgrounds and have some opposing viewpoints on theology. In addition, she has some WONDERFUL information about natural healing modalities, but I have somewhat moved on from the all natural, anti-medical system point of view that she holds dear. I went full vegan years ago to prevent cancer, and I got cancer anyway.
My client thinks she'll never get cancer because she's found the CURE for all Cancer. And that is just wonderful. I'll try it. BUT I'm also going to avail myself of diagnostic tests and allopathic medical means of treating the latest discovery... I don't even think I'll mention it here. Not today. I'm not going to mention it until after Tuesday's biopsy, where, if the abnormal cells found in a recent lab test prove to be part of a larger cluster of abnormal cells or perhaps a malignancy, I will decide what to do about it.
Yes, I am SICK of the cut/poison/burn treatments for cancer. But I'm not mightily convinced that if I just take ninety seven cancer-fighting supplements, eat a raw diet, alkalize my body, eliminate all stress, work out vigorously and regularly, and have all my root-canal treated teeth pulled, I'll miraculously cure any lingering cancer in my body.
I have a chronic PAIN in the ASS from the first cancer surgery and radiation. So I am not SOLD on the idea that chemo, radiation, and mutilation are the solution, either.
I feel... like burying my head in the sand and ignoring EVERY intervention, medical, herbal, psychic, or otherwise.
How do you feel? Are you fond of trying every possible remedy to help your body heal? Do you live in denial? Do you blindly follow everything the doctors say? And worst of all... do you eat the way they feed patients in most hospitals? HORRIBLE! Give yourself a fighting chance and read up on nutritional healing. But don't assume the "system" is determined to kill you off, after making as much money off of your illness as they possibly can. However... do realize... that is a typical outcome. They make money... you keep getting sick, and then eventually you die. But you can get well. I feel well. These are microscopic cells we're talking about. I'm going to check out Biogetica for some solutions to what might be ailing me. I'll tell you how it goes.
Yesterday I had an ultrasound of my kidneys. Well... one kidney and one empty cavity in my abdomen where a kidney previously resided. I will hear the news about that exam in a few days, and I expect it to be fine, but I also had some great news on Monday, when the oncologist reported that my bone scan revealed no bone metastases.
I do have some deterioration in my bones, and because there is a lot of pain in my hip bones, the oncologist is referring me to a pain specialist and an orthopedic surgeon. They will have ways of relieving my pain, but I am being pro-active and doing what I can to rebuild healthy bone.
I joined a gym, and I've been working out. I tried a yoga class yesterday. I'm really weak, compared to a couple of years ago, but I'm building muscle and strength will return. I'd rather lie here, typing, than get up and go back to the gym today, but that's what I've got to do. I'll hop on a bike, ride there, work out, ride home, and then take a swim in the chilly back yard pool. Yesterday, the cold swim relieved all the pain and inflammation in my muscles.
I love a cold swim. I plan to look younger and hotter in no time, bag or no bag. Well... there will always be a bag. If I ever couldn't get bags, I'd be up "shit" creek, as it were, and even a paddle couldn't save me.
You'll meet a few nosy nurses in my book. Some want to know every time you move your bowels. I guess that's all right. It's a medical question. But once in a while, they don't directly ask a question. They just feign disgust about other people delving into someone's private life, as I never heard the media do, regarding Farrah Fawcett's sex life. And then they wait, clearly expecting some salacious disclosure.
One of the several times that my malignancy was misdiagnosed, my gastroenterologist was hovering over my head the minute I woke from the colonoscopy. He said, "I took one look at That mass in your anus and said, 'She's got anal cancer.' But then we biopsied it and it's benign."
It wasn't, but I wouldn't learn that for a couple of months. Those were two insane-making months, after I got a call from the gastro doc's partner, saying, "I know Dr. F told you that your mass was benign, but ..."
It was a pretty big 'but'.
But as soon as Dr. F left my bedside, the nurse was there, talking about Farrah Fawcett, who had just died of anal cancer, a few months before.
“I thought it was so intrusive and rude of the media to speculate on Farrah Fawcett’s sex life when she had anal cancer. Because, you know, most people who get anal cancer have had a lot of anal sex.”
No, I didn’t know. I had never heard that.
I could tell the nurse was fishing for information about my own sexual proclivities. And I was not only going to swallow the bait, but I intended to snap her pole in half, and possibly bite off a few fingers, as well. “Oh, well then I guess I’m lucky, because I’ve never had anal sex. A LOT of sex, but no anal.” It was true. Unless someone got to me at the one or two parties where I passed out, probably from a substance surreptitiously slipped into my soda, I’ve always been and shall forever remain an ass virgin.
The nurse reiterated that it was inexcusable of the media to humiliate Farrah in her last days on earth by probing for information on what, where, and from whom she may have “taken it up the ass”. And I agreed it is nobody’s business what anybody does in the privacy of their own... wherever they do it.
But even though it’s nobody’s business, I will mention a few things about my own sexual past, because like me, you might be a little unclear about the origin of your cancer. So, first, like my very nice doctors, I will reassure you that your sexual history has nothing to do with your cancer, and the fact that a number of people who previously had one kind of sex or another later developed anal cancer is NOT proof that there is any connection between your cancer and anal sex, nor does it mean that you or I have or ever did have HPV.
Nevertheless, because that nurse’s remarks really ticked me off, I have since done a little (did I say a little? I meant obsessive) Internet sleuthing about the link between anal sex and anal cancer. You can find all sorts of drivel out there. On YouTube, there’s a doctor in a lab coat (or could he be an actor in a propaganda film) proclaiming that every person with anal cancer has had anal sex. I can tell you that this is not true of me, as far as I know. There were those drunken parties I mentioned, where I passed out, but I think I might have awakened a bit chafed, afterwards. But you, personally, KNOW whether you’ve had anal sex. And if you have, big deal. Lots of people have. That doesn’t mean they’re going to get cancer, nor does it mean God is punishing you for the “sin” of sodomy, nor should anybody, ever attempt or succeed in making you feel responsible for your illness. Blaming you is absolutely not going to help you feel better. So forget about it.
It is ridiculous for people to blame you or your sexual activity, past or present, for what is frankly a frightening, painful, and potentially deadly disease. Don’t let misguided fanatics tell you God hates you. I believe he absolutely loves you. But I’m not going to talk about him, much. I might mention him now and then, accidentally. Pay it no mind. My connection to the Almighty is either my own reality or my own psychosis, but I’m not about to try to make it yours. What you do with your soul, just like whatever you do or do not with your anus, is entirely up to you. It’s none of my business. I love you just the way you are, and I don’t even want to know. But I have to say, this book is for people who are not at all pleased to be taking this cancer journey. Others are welcome to read and inquire as well, but when I got cancer, I ordered a book called “Now that I Have Cancer, I am Whole” and I have to say that I found the entire premise EXCEEDINGLY annoying. In all honesty, I couldn’t even read the book. Because I am anything but whole. Butthole. Ha. That’s something I no longer have. And I’m mad about that.
It’s actually a bit easier to keep clean with the intestine dropping poop into a bag, but then, there’s always a damnable bag of shit in my pants. That never goes away. I cried about it for a long time before and after it happened to me. And let me tell you, they told me the point of doing chemo and radiation prior to surgery was to make the tumor shrink so that, perchance, colostomy could be avoided, but I don’t think I ever had a ghost of a chance of avoiding a colostomy. And had I known what hell the radiation would cause, I might rather have opted to skip it and go straight to surgery.
According to the Farrah Fawcett Foundation, there does seem to be a sexual history connected to people with anal cancer. The connection, it seems, isn’t so much anal sex as the virus responsible for anal warts, a sexually transmitted strain of HPV, or Human Papilloma Virus. I am not certain that connection applies to every type of anal cancer. My tumor was a malignant neoplasm (adenocarcinoma) of the anal canal. In the case of Farrah Fawcett, the tumor was not an adenocarcinoma but a squamous cell carcinoma. Hers was not supposed to spread to vital organs. Adenocarcinomas are more prone to metastasis than squamous cell cancers. Most squamous cell cancers are cured without surgery. But Farrah’s did metastasize, and though she fought bravely, the disease was just too far advanced.
I have the good fortune of being too poor to travel to Germany for the alternative treatment Farrah sought. I also am not a movie star whose livelihood depended on my keeping my body beautiful. So, after much persuasion by several doctors, I agreed to the surgery that probably spared my life. (It has, so far, at least.) I had a permanent colostomy. I poop in a bag. It sounds horrible, and I did think I’d rather die, but I want to tell you, it’s NOTHING as bad as you think. And it does result in some very pleasant sensations you’ll never experience without one. In fact, you may not be around to experience much of anything at all, without one. If you like farting, and who doesn’t, because of the release it brings, what could be better than farting through a hole in your abdomen, directly into a bag, where you never have to worry that someone else can smell it, as long as the bag is on and the seal is adhering properly. Yes, there is the possibility of a disastrous accident, but they are rare, and generally make for memorable stories you can recount to all your friends and relatives, or write about them in a humorous book, as I plan to do in the second half of this two-part book, called “A Colostomy’s Not a Catastrophe, But it Will Give You Many Opportunities to Have One”
I have had enough of cancer and myriad complications of treatment. I'm quitting. I intend never to be sick again. Follow my journey from Hell to Health.