It is incredible how much of your body and life is managed by your colon. I truly didn't know this, up until the fateful day that my colon tried to kill me. It was Thanksgiving a few years ago that I got C-Diff which got into my bloodstream and caused a life-threatening sepsis. Afterwards, I had severe pseudomembranous pancolitis that took months to recover from, and it left me irreversibly scarred. Mentally scarred, for certain, but possibly physically as well.
It's the mental that gets me - I can see clear as day the handsome long-haired doctor sitting on the counter,, swinging his legs, jauntily telling me that they were going to remove all my colon - just clean it out like a whistle, he said, as if he was talking about waxing his Porsche. After losing my breast, half my liver, my hair, and someday my life, I was also going to live it by shitting in a bag, and he was practically salivating at the idea.
I can also see the pretty blonde female surgeon, who, while I was crapping uncontrollably in the bed, c-diff fumes filling the room, looked down at me with sympathy and said not to worry, they were used to it, and trust me, they didn't want to operate because it had an 80% death rate - but it might be the only way to save my life.
I've been scared of my colon ever since.
I've been scared of hospitals ever since. There have been several occasions that regular people would have gone to the ER - but I wouldn't. I might be the only metastatic cancer patient who has been that ill who has not visited hospitals. It is because of c-diff.
Last weekend is one of them.
Now, here is your warning: this post has a lot of TMI goodies, which always come along with a cancer diagnosis, so I'm warning you now: put down your drink, finish up you lunch. I'm a very genteel woman who hates talking about her lady-bits and the assholey things next to them, but if I want to tell this story, it's unavoidable. So you have had your warning.
I've been rather lucky, colon-wise, all my life. "Going to the bathroom" was nothing I had to think about, or take books with me to do, or make a big fuss over. 15 minutes after waking up: Sit, plop, done. 15 seconds, tops.
After the c-diff mess, it did take me months to recover, perhaps a full year. C-diff, if you didn't know, is a diarrheal disease, like dysentery and every bit as horrible as you have imagined it, assuming you have imagined dysentery. It's not like when you get the flu and have the runs, it's like when you get a big cut and bleed. You are leaking continuous foul-smelling watery shit out your ass and you can't stop it, don't know when it's coming or done. Just as you can't control when you bleed out of a cut, you can't control this. There is no "holding it" at least to run to the bathroom, it surprises you. However, when you had it like I did, it never stops. It was like somebody turned on the shit spigot and left it on. (I lost 13 pounds of waterey shit), which wouldn't sound so bad except I was under a hundred when I went in
So, the day the diapers came off (months after I got out of the hospital) was a day to celebrate. (Quietly). Actually, you step it down, first it's diapers, then it's maxi-pads, then it's light-days pads, then you take the leap of faith.
(Off topic: Do you know they don't make adult diapers for somebody as small as me? I hope I never need to know about this again but really, not everybody has an ass the size of a flotation device. And no, toddler ones do fit because the leg holes are too small. Make a small size please. Thin discrimination!)
Despite the odds, and the longest hospital stay I've had to date, recover I did. The only thing that remained was my horrible diet. I was told by a nutritionist to eat highly processed junk food so that my colon wouldn't have to work, exactly the opposite of what I like to eat and have eaten all my life. I did that for a long time, and then the cancer took over again and I could barely eat anything and lost all appetite. A piece of candy now and then was all I needed, so I never got back into healthy eating. Over past year I've been on this new chemo, I've been improving although my diet has not. So C-Diff left me bad diet as a gift. With all the chemo and pain meds you'd think constipation would be a problem I'd have but it hasn't been true. Healed from C-diff, I've been regular again.
Until about three months ago. I got constipated. I don't know what to blame. My pain meds have not changed. I've been on this chemo since last October. I still eat the same crap although a bit more of it. I eat easy-on-the-colon and am a water nut. No reason for having constipation.
I didn't notice at first. After a week or so, I realized......"hmmmmm.... ain't nunthin happen down there," so I tried some senekot. Now I wasn't uncomfortable or feeling bad, it was merely time that made me notice.
The senekot didn't work. I tried it every day, and then twice a day. Nope. A month later, (yes, it had been a month between "tuffetts" as my mom used to call them) I was starting to feel bloated (and my husband pointed out that I looked pregnant) but otherwise I felt okay. I wasn't missing it and I didn't feel like I actually needed to go. Perhaps my body had evolved into a superior being that no longer needs to defecate.
Still, at my oncology appointment, my doctor asked about my bathroom stylings as always, and I told him about my issue. He said because of my C-Diff, he'd rather have me a bit constipated then loose, (he is also scarred by that) and I agreed with him. So he suggested Milk of Magnesia as easier on the colon than Metamucil.
No matter, the milk of magnesia worked. Gave me heartburn, but worked. In two days, I felt better. And bonus! Two days later, it happened again.
Now, I'm legally blind without my contacts, and so I am not wont to inspect the bowl to see what's in there. Like you, I live on the internet, and I know that there are people who check in daily as a sign of health and there is even a chart out there that deciphers shapes and colors for you - but that is a bit much for me.
I did, however, see blood, bright red blood.
"Shit", I said to my shit.
Well, maybe it's natural after a long period of constipation, right? So I'll keep track so I can tell my doctor if it keeps up. I figured I'd grab my glasses before I next went in there, (omg, what a pain this is going to be!!)
I'd also decided to change my eating habits and that was the day I decided to eat better. I had a bran muffin for breakfast (instead of a donut) and a peach for lunch (instead of taffy). Dinner I had sweet potato, a pork chop and spinach salad.
Instantly after dinner, I felt sick. I felt like I'd eaten way, way too much and it was going to overflow if I moved. It was a horrible feeling, I do not know how obese people who eat after satiety can do it. Full to me is not a good feeling, it is true misery. Not only full, but nauseated, shivers, just generally feeling like that delicious meal had been a horrible idea. So I went to sit next to my husband to watch some TV and wait to digest, stomach jostling, me feeling like I was holding back Niagra Falls. As time passed that discomfort turned to actual pain, and I wasn't digesting anything. Around my belly button area, I was feeling strong cramps, like somebody had tied a garrote around my waist and was pulling, and they were getting more and more powerful by the minute. And I felt so full of food and gas I couldn't move. Soon, the cramps got too bad and I went to bed to try to curl in a ball. And, of course, my cat who had been ignoring me for a week decided that was the time for lovin' so she's rubbing around me trying to get me to pet her just as I'm trying not to scream in pain or puke on her..
I am fortunate to have some powerful painkillers, so even though I had finished my daily maintenance dose, I took one, which relieved the pain enough so I could get in bed and let the cat near me and keep somewhat still. But it started up again almost immediately. MY husband was looking at my white face and hearing my groans and saying "Are you sure you don't want to go to the ER?" and I said, powerfully, "Yes."
My husband should have overridden me but he never will.
Because I'm a moron, that's why I didn't go. But I have had enough hospital experience and it's awful. I'd rather die at home then in the hospital. I hate hospitals. Hospitals have bright lights, there are people who accuse you of wanting drugs, people who want to stick tubes up your butt and make you put size 20 clothes on a size 0 body. They are all really pissed you are there ruining their night. If you cry and complain you are treated with condescension and if you are stoic and quiet they treat you like nothing is wrong with you and move to the loud people. If you want your pain meds on time you are a drug seeker and if you don't, they will never come to your room. And a lot of time, you go and they tell you it's nothing and send you home, but not before putting tubes in god-awful places or putting you in one machine or the other, and not to mention them refusing to use my port because it's in my arm rather than my chest and that's too confusing to figure out.
And besides, I hadn't shaved my legs in a couple days.
The worst my house has is a cat who wants to sleep under the covers with me. And a lot of dust bunnies.
My google searches showed I could have a blockage which is a MEDICAL EMERGENCY, or it could be a diverticulitis disease flaring up (or, cancer intruding on an organ, which is the most likely of those). However, given the choices Dr. Google gave me, and since I know I have diverticulitis from previous scans, I picked that as my diagnosis. I decided I had that because there is nothing to do for it but stay comfortable. The blockage requires emergency surgery and TUBES up the BUTT and down the NOSE, and I cannot have that. I really cannot, how would I get my every six hours Afrin spray in? The second one also allows me, in fact encourages me, to continue my candy/donut diet. Best of all, nobody would have to remove any of my intestines or colon.
So decision made, there I lay in bed, so full I couldn't lie down, as everything would slide up the back of my throat, burps flying out, with cramps rending my body in two. I'd get up and sit on the toilet, hoping that end would have some relief but it was closed tight. Finally, six hours after I'd eaten, I threw up, just a little, and it was full bites of what I'd had for dinner, including whole pieces of spinach. (Remind me never to become bulimic). Nothing had digested even after all that time, and it tasted horrifying, really bulemics, stop, it's just nasty.
But, I felt better for a few minutes, as one always does after puking. I wish I could do like those bulemics do, and really let it fly. I bet if I could have gotten it all out, my night would have been much better. Clearly, my body was rejecting this food and didn't want to digest it. But throwing up for me is something I fight against tooth and nail, and so once that piece of meat and slimy spinich came out, I gulped and swallowed and stopped myself from doing more.
Of course, the pain started again.
I told my husband, "When it's morning, we are going to have to go to the ER." Even I know you don't go to the ER with belly pain and no fever (or appendix) on a Friday night with the gunshot victims and Jack Daniels heart attacks, unless you are okay sleeping in plastic chairs in the waiting room. (Although to be honest, metastatic cancer probably gets you in quicker, but believe it or not, I haven't tested that yet.). I also just couldn't see a 30 minute drive over bumpy California roads. So many reasons not to go.
Every 2 hours I took one medicine and every 2 hours I took the other, all night long. It didn't keep me comfortable, I was a 9-10 on the stupid pain scale, and when the pills/spray kicked in I was down to maybe a 7 until it started building up again after about an hour. But it kept me home. And it probably saved my insurance company 50k-100k (or more) on tubes and tests and doctors and nurses and scans. And I doubt they'd have done a better job in the hospital, as I remember never having a nurse check on me unless I asked her to.*
At 7:00, am, the pain started easing up. It was also the day my new iPhone arrived. (That, my friends, is the REAL reason I didn't want to go to the hospital, now you know the worst about me. I like my toys.) I drifted off to sleep after 7:00 and woke up at 1:00, doing better. I decided if I could make it through a night like that, I could make it through a weekend, and if it was bad on Monday, I'd go to my doctor and he would know what to do. I gave my colon a day off and ate nothing and set my phone up. Tuesday, I had some soup. Wednesday, I began to eat normally and all is well by now.
Well, it's Friday as I write and I haven't gone to the doctor. I am not 100% well but am recovering. I have slept a lot this week. I decided to get "regular", so I take senekot every night and usually am productive the next day. (If what I experienced had to do with constipation, I don't want to do that again).
And I have a lot of pain (again) on the right side especially when I breathe in. My stomach is back to feeling like it did a few months back - constantly full. I had gotten to 97 pounds, goal weight 100. We'll see if I can keep it up but I once again have no desire to eat. I am intensely fatigued all the time, but am still recovering. My energy gains are gone. But I have a new iPhone 7+and I didn't go to the ER, saving my insurance thousands..
You are welcome, Anthem Blue Cross.
Each time I get slapped down, I get up. But I admit, I get up slower each time. How much is the fact that I'm aging and how much is cancer and all the treatment I've had? It's hard to say isn't it? I'll never know what it feels like to be in my 50s and healthy. MY husband, however, is 69 and much healthier than I am.
Last September, one year ago, I had 2 weeks of incredible pain, which stopped INSIDE a scan machine! Because it stopped I thought I had kidney stones, or something else. Unfortunately, that turned out to be mets growing, farther than it had before. I have been on this chemo a year, and maybe it's done all it can do. So I'll tell my doctor when it's time to see him in five weeks, and see if he'll do another scan, although I had to fight the insurance company for the last. If they won't, then we'll see.
My insurance company is doing a medical "review" to decide whether I can keep getting the pain drugs I was taking so cross your fingers they say yes. Otherwise, there will be more hospitalizations, as I can't take pain like that without chemical help. It would be stupid to say no but hey....they have said no to PET scans. Need I say more?
This is the life of a metastatic cancer patient. I had such a long period of feeling good, I decided to start a little business, make some money for Christmas, and then BAM. Something like this happens. A healthy woman could recover in 24 hours. It takes me a couple of weeks. And it reminds me I'm never too far from it being all over. It reminds me that starting a business is risky for me, risky for everybody, as one day I could suddenly not fulfill orders and nobody around me could finish. It's like cancer wants me to just sit down and watch YouTube videos all day.
Well, I'm doing ok now. This could have ended quite differently - it may still. One thing for sure, I'll let you know.
~~~~~~~~
I am asking you to check back in October as I will be doing some important posts, starting tomorrow, and I also am going to have a guest post with a surprise topic. I also will be giving away a very cool item that has a LOT of the proceeds going to a REAL charity (not 5% to a nothing charity) and despite it being pink, it is something I use and you will want. /hint
***
Please start your amazon purchases from my page - that would really be nice. If you start from the search box on my page and then shop, anything you put in your cart and check out will give me a small percentage. Unfortunately, you have to be on my full page and not mobile to see the search box - I'll figure out how to get it to view on mobile one of these days. That money really helps around Christmas. No I am not poor but I'm not Mark Zuckerberg either. I work hard to keep the blog going and this Amazon thing is how I get paid. I am solidly lower middle class, paying for a kid in college, for those who haven't figured it out yet.
***
If I seem hard on hospitals, read this post. I have been hospitalized after this, as had my dad. I had some amazing nurses which I wrote about - the ones in ICU in Mercy San Juan and all the ones in UCSF and my wonderful student nurse, Dana, whom I'll never forget. I hope that she hasn't become jaded by now either as she was so loving when I was so terrified. But there have been a lot of misses in the wards, and Clementine stands out for me, but she's not alone. Plus, what my dad experienced with nurses when he was sick ( and died) would make a horrible, unfunny sitcom. They actually refused to come over to an old lady who had fallen out of bed, right in a room in front of the nurses station because she yelled "help" instead of hitting the the call button (which she couldn't reach) and I was told that flat out by the staff. "We don't come if a patient is screaming, they have to use the button." I would rather die than ever go to a hospital in Carson City, Nevada, although the outcome would be exactly the same from what I saw that day (and my father did die). Anyway, hospitals are not good places under the best of conditions and I intend to stay home as much as I can. A good nurse, and you will have one, can make your day. But a bad one, and you may have one, will ruin your entire thought about hospitals.
Unless I'm running a fever, mere pain won't send me in.
Friday, September 30, 2016
Monday, September 26, 2016
Writing to Heal
LBBC is beginning a campaign to remind people not to forget those of us who are living with metastatic cancer and are spending some time this week teaching people about mets. They specifically asked me to write a post about using writing as a form of healing. And of course, what I learned is that writing is only part of the healing, it is the community you get from writing that does the actually healing.
When I first began this blog, nearly 7 years ago, I had no lofty goals other than documenting this weird part of my life, which I was sure would last a year and then be a memory. I didn't dream of fame, or changing the world of cancer, or being somebody that people looked to in hope; in fact, I never thought anybody who wasn't related to me would read this. My sole purpose was to keep my family off my back. Like all newbies to cancer, I pictured myself spending the next four months lying in a darkened room, sick, puking and most importantly, sleeping. I imagined concerned family members calling me mid-barf or worse, mid-dream to ask how I was, and me repeating the same thing over and over, "I'm fine. No really, I'm good."
My brain said, "No. Hell no."
Of course, realistically, they needed to know what was going on with me, so I decided to share how I was doing and put it in one accessible place. The doctor said, "I'm sorry to tell you, but I'm pretty certain you have cancer." and my first thought was "a blog!" THIS blog. I'd blogged before, and even gotten into trouble for it, and had been looking for new material. Cancer, what luck, the perfect subject. I wanted a "no excuses" place with an easy to remember name, where anybody could find it when they wanted to check in. I also decided, quite deliberately, that I would write it humorously; first, so nobody would worry and second, so that anybody who wanted to call would rather read here and get a laugh then dial the phone and hear my grouchy voice.
That was a bad idea, by the way, just in case you feel like you want to walk my path. People called anyway, even if just to tell me they liked me most recent post. Fortunately, as it turned out, my cancer imagination was worse than reality. Back in those early days of my first chemos, I was healthy enough to talk on the phone and certainly happy to. I didn't sleep or puke as I thought I would; in fact, I felt pretty normal. I felt bald, is how I felt, which is a lot different from feeling sick, which is how I feel now, even with all my glorious hair.
You can go back and read the beginning and see if I'm remembering right.
I did not puke until sometime around year 4, when Gemzar got me. I had no idea that when I started writing, of course, I'd still be blogging about cancer years later, or for that matter, that I would be doing chemo for the rest of my life. Yet the words "Metastatic" became part of my world about 5 months after treatment ended. By the time of my first puke, my parents had both died, my brother had stopped talking to me, I was no longer working, and many people in my real life had forgotten I was even sick and many had disappeared. But I'd picked up a following online who guided me through all my challenges, from c-diff to gamma knife to even the many boring healthy periods. I don't think the value in having people know what you have gone through - or even just being willing to listen - can be overstated. That impulse to write the blog was truly one of the best things that came out of the diagnosis.
People stuck with me and this blog, even though some of the humor had left my spirit and the tone of this blog changed to become more introspective. That is inevitable when you are coming to terms with your mortality. I still get some humor in now and then, but after 7 years, I find that everything is repetitive. How often can you write about the same thing and keep it fresh? Another PET? My 40th? Another chemo infusion? My 300th? It's impossible. Chemo, unimaginable to me 7 years ago, has just become routine, like getting my hair blown out. I have periods of intense pain and illness, and even more periods of seeming health. I find it hard to write about both - I don't want to turn this blog into a litany of "what hurts today" and I also don't want it full of trivialities.
The blogosphere has changed since I began, as is the nature of the internet. People have less interest in reading now, and are more interested in shorter pieces of information or video. I migrated over to facebook early, which was one of the best things I've done. Now, I have a page where I can give out information not "worthy" of this blog (not meaning it's any less important, just that I can't think of a thousand words to go with it). The blog and facebook (and twitter, to a lesser extent) are complementary, each having their own place. I use Instagram to document my life visually, which mostly shows how little I do. Head on over if you want to see a hundred pictures of my dog sleeping. However, with these tools, I am able to stay in touch with anybody who wants to know about me; whether it is how I feel about a certain issue in the World of Cancer to what my kids have been up to. And there is give and take, which seems a little easier on facebook than on a blog.
Blogging is for writers. Facebook is for communicators. Both are for friends, of which I've made many.
Some consider me an advocate for metastatic cancer patients, which is why LBBC asked me to write this, I suppose. I don't put that name on myself. Yes, I am very committed to the idea that awareness is an anachronism, and we must move forward from that idea. I think the article I wrote 2 years ago about moving on from awareness to research still is powerful and necessary and should be shared through October.
I've lived that truth. I could be a wealthy woman now if I took money and products from all the awareness groups that asked to use my space to get their word out, but I decided early on, before I really understood the implications, that wasn't the route I was going, and I would have to truly believe in it as a helpful product for cancer patients before I'd mention it.
And, as I have gotten deeper into the world of metastatic cancer, as I have learned more about how cancer behaves, I'm more sure than ever that the concept of awareness has been a huge error in focus, and I sit in despair that it will ever be corrected. I sometimes think - what if we had gotten it right 30 years ago, and we had understood that finding cancer early didn't cure it, and instead, put all that money collected in the name of awareness into research instead? Where would we be now? Still, I don't dwell. I have hope that in spite of the assault of Pink October, we will still make progress in moving towards a cure for metastatic breast cancer. One of those charities trying to change focus is LBBC (Living Beyond Breast Cancer.) Despite their unfortunate name and residual awareness focus, they are very actively reaching out to the metastatic cancer advocates and listening, which is a good thing. I am still conflicted by them but at least they are trying, unlike Komen, who does not reach out to metsters at all.
My continued survival is proof that we are on the right track. So as an advocate goes, I've said my piece, and I stick to my convictions, but I let the words I've said stand for themselves and move on. Life, as I have learned, is too short to get angry. As I said before, I don't really care for repetition.
Don't laugh, but I see myself as more of a beacon of hope for those newly diagnosed with mets. When I first heard the words, "your cancer has spread to your liver" living five years seemed impossible, and I was sure I'd be gone by now. I mean, I was absolutely certain I would be gone. And I'd been sick enough at times for that to be true, but the body has an amazing power within it, Instead, life stretches before me as it always has, with some faltering along the way. Even with my last metastatic relapse, which sent cancer through my abdomen and spotting into my lungs, I felt hope and sure enough, three months later I was in full remission again. I'm on my 8th or 9th chemo, I honestly can no longer remember - but even being "heavily pretreated" (in cancer-speak, that means you have less chance of next treatment being successful) it worked well.
I get letters and contacts from women newly diagnosed and the one question they have is "how do you manage." I tell them to the best of my ability how to survive mentally. I feel that my main purpose is to give people hope that they will be like me, that they can be like me. I was just past 50 when diagnosed, with a 12 year old who still needed raising. Now I'm 58, that kid is in college, and I really think I could live another 12 years and die at a respectable age. I think a lot of us can do that now. (I'm not saying that 70 isn't too young to die, because where I stand now, it certainly is. I have a good friend who is 72, looks 52, and is a world traveler, with her last trip to Africa behind her and her next trip planned to Patagonia. But after living with cancer for a decade or more, your perspective changes.)
Aside from being a "not dead yet" role model, I also feel like I get to be a teacher. I want people to question what they hear, especially in the world of cancer. I raised a kid smart enough to go to Caltech, after all, that should give me some science cred. Numbers are twisted, on all sides of the equations. People don't understand statistics, and so I have explained: The 1-8 number is misused. The 30% will get mets is not accurate, we don't in fact know that number; it's not tracked that way. I've explained what loss of appetite from advance cancer is really like, helping many learn not to force their sick loved one to eat. So I can use this blog to teach people to be skeptical, especially when marketing and big money is involved.
Helping others has been motivating, but writing has been a form of healing for me, more than I ever would have guessed. The blogger community has been amazing and supportive and comforting but the larger ePatient community moreso, those on twitter, those on facebook, those on YouTube even and those living with different diseases who have shared with me too. I believe without the readers and followers I have, I may not be as healthy as I am now. The women who read and find hope through my story, also give me hope. They give me the ability to relive what I've been through and to say, "If I can do this hard and terrifying thing, you can too." When it turned out my body would not be healed, I discovered my spirit could be - by you who read me and comment. Thank you.
#Stage4Lifer
Barring unforeseen circumstances, I will be writing this month of October. I will be posting things on facebook too, so please like my page there and join up. If you don't understand why many metastatic cancer patients do not find comfort in pink October, instead we find it angering, like my page and wait for October. I think you'll soon understand.
When I first began this blog, nearly 7 years ago, I had no lofty goals other than documenting this weird part of my life, which I was sure would last a year and then be a memory. I didn't dream of fame, or changing the world of cancer, or being somebody that people looked to in hope; in fact, I never thought anybody who wasn't related to me would read this. My sole purpose was to keep my family off my back. Like all newbies to cancer, I pictured myself spending the next four months lying in a darkened room, sick, puking and most importantly, sleeping. I imagined concerned family members calling me mid-barf or worse, mid-dream to ask how I was, and me repeating the same thing over and over, "I'm fine. No really, I'm good."
My brain said, "No. Hell no."
Of course, realistically, they needed to know what was going on with me, so I decided to share how I was doing and put it in one accessible place. The doctor said, "I'm sorry to tell you, but I'm pretty certain you have cancer." and my first thought was "a blog!" THIS blog. I'd blogged before, and even gotten into trouble for it, and had been looking for new material. Cancer, what luck, the perfect subject. I wanted a "no excuses" place with an easy to remember name, where anybody could find it when they wanted to check in. I also decided, quite deliberately, that I would write it humorously; first, so nobody would worry and second, so that anybody who wanted to call would rather read here and get a laugh then dial the phone and hear my grouchy voice.
That was a bad idea, by the way, just in case you feel like you want to walk my path. People called anyway, even if just to tell me they liked me most recent post. Fortunately, as it turned out, my cancer imagination was worse than reality. Back in those early days of my first chemos, I was healthy enough to talk on the phone and certainly happy to. I didn't sleep or puke as I thought I would; in fact, I felt pretty normal. I felt bald, is how I felt, which is a lot different from feeling sick, which is how I feel now, even with all my glorious hair.
You can go back and read the beginning and see if I'm remembering right.
I did not puke until sometime around year 4, when Gemzar got me. I had no idea that when I started writing, of course, I'd still be blogging about cancer years later, or for that matter, that I would be doing chemo for the rest of my life. Yet the words "Metastatic" became part of my world about 5 months after treatment ended. By the time of my first puke, my parents had both died, my brother had stopped talking to me, I was no longer working, and many people in my real life had forgotten I was even sick and many had disappeared. But I'd picked up a following online who guided me through all my challenges, from c-diff to gamma knife to even the many boring healthy periods. I don't think the value in having people know what you have gone through - or even just being willing to listen - can be overstated. That impulse to write the blog was truly one of the best things that came out of the diagnosis.
People stuck with me and this blog, even though some of the humor had left my spirit and the tone of this blog changed to become more introspective. That is inevitable when you are coming to terms with your mortality. I still get some humor in now and then, but after 7 years, I find that everything is repetitive. How often can you write about the same thing and keep it fresh? Another PET? My 40th? Another chemo infusion? My 300th? It's impossible. Chemo, unimaginable to me 7 years ago, has just become routine, like getting my hair blown out. I have periods of intense pain and illness, and even more periods of seeming health. I find it hard to write about both - I don't want to turn this blog into a litany of "what hurts today" and I also don't want it full of trivialities.
The blogosphere has changed since I began, as is the nature of the internet. People have less interest in reading now, and are more interested in shorter pieces of information or video. I migrated over to facebook early, which was one of the best things I've done. Now, I have a page where I can give out information not "worthy" of this blog (not meaning it's any less important, just that I can't think of a thousand words to go with it). The blog and facebook (and twitter, to a lesser extent) are complementary, each having their own place. I use Instagram to document my life visually, which mostly shows how little I do. Head on over if you want to see a hundred pictures of my dog sleeping. However, with these tools, I am able to stay in touch with anybody who wants to know about me; whether it is how I feel about a certain issue in the World of Cancer to what my kids have been up to. And there is give and take, which seems a little easier on facebook than on a blog.
Blogging is for writers. Facebook is for communicators. Both are for friends, of which I've made many.
Some consider me an advocate for metastatic cancer patients, which is why LBBC asked me to write this, I suppose. I don't put that name on myself. Yes, I am very committed to the idea that awareness is an anachronism, and we must move forward from that idea. I think the article I wrote 2 years ago about moving on from awareness to research still is powerful and necessary and should be shared through October.
I've lived that truth. I could be a wealthy woman now if I took money and products from all the awareness groups that asked to use my space to get their word out, but I decided early on, before I really understood the implications, that wasn't the route I was going, and I would have to truly believe in it as a helpful product for cancer patients before I'd mention it.
And, as I have gotten deeper into the world of metastatic cancer, as I have learned more about how cancer behaves, I'm more sure than ever that the concept of awareness has been a huge error in focus, and I sit in despair that it will ever be corrected. I sometimes think - what if we had gotten it right 30 years ago, and we had understood that finding cancer early didn't cure it, and instead, put all that money collected in the name of awareness into research instead? Where would we be now? Still, I don't dwell. I have hope that in spite of the assault of Pink October, we will still make progress in moving towards a cure for metastatic breast cancer. One of those charities trying to change focus is LBBC (Living Beyond Breast Cancer.) Despite their unfortunate name and residual awareness focus, they are very actively reaching out to the metastatic cancer advocates and listening, which is a good thing. I am still conflicted by them but at least they are trying, unlike Komen, who does not reach out to metsters at all.
My continued survival is proof that we are on the right track. So as an advocate goes, I've said my piece, and I stick to my convictions, but I let the words I've said stand for themselves and move on. Life, as I have learned, is too short to get angry. As I said before, I don't really care for repetition.
Don't laugh, but I see myself as more of a beacon of hope for those newly diagnosed with mets. When I first heard the words, "your cancer has spread to your liver" living five years seemed impossible, and I was sure I'd be gone by now. I mean, I was absolutely certain I would be gone. And I'd been sick enough at times for that to be true, but the body has an amazing power within it, Instead, life stretches before me as it always has, with some faltering along the way. Even with my last metastatic relapse, which sent cancer through my abdomen and spotting into my lungs, I felt hope and sure enough, three months later I was in full remission again. I'm on my 8th or 9th chemo, I honestly can no longer remember - but even being "heavily pretreated" (in cancer-speak, that means you have less chance of next treatment being successful) it worked well.
I get letters and contacts from women newly diagnosed and the one question they have is "how do you manage." I tell them to the best of my ability how to survive mentally. I feel that my main purpose is to give people hope that they will be like me, that they can be like me. I was just past 50 when diagnosed, with a 12 year old who still needed raising. Now I'm 58, that kid is in college, and I really think I could live another 12 years and die at a respectable age. I think a lot of us can do that now. (I'm not saying that 70 isn't too young to die, because where I stand now, it certainly is. I have a good friend who is 72, looks 52, and is a world traveler, with her last trip to Africa behind her and her next trip planned to Patagonia. But after living with cancer for a decade or more, your perspective changes.)
Aside from being a "not dead yet" role model, I also feel like I get to be a teacher. I want people to question what they hear, especially in the world of cancer. I raised a kid smart enough to go to Caltech, after all, that should give me some science cred. Numbers are twisted, on all sides of the equations. People don't understand statistics, and so I have explained: The 1-8 number is misused. The 30% will get mets is not accurate, we don't in fact know that number; it's not tracked that way. I've explained what loss of appetite from advance cancer is really like, helping many learn not to force their sick loved one to eat. So I can use this blog to teach people to be skeptical, especially when marketing and big money is involved.
Helping others has been motivating, but writing has been a form of healing for me, more than I ever would have guessed. The blogger community has been amazing and supportive and comforting but the larger ePatient community moreso, those on twitter, those on facebook, those on YouTube even and those living with different diseases who have shared with me too. I believe without the readers and followers I have, I may not be as healthy as I am now. The women who read and find hope through my story, also give me hope. They give me the ability to relive what I've been through and to say, "If I can do this hard and terrifying thing, you can too." When it turned out my body would not be healed, I discovered my spirit could be - by you who read me and comment. Thank you.
#Stage4Lifer
Barring unforeseen circumstances, I will be writing this month of October. I will be posting things on facebook too, so please like my page there and join up. If you don't understand why many metastatic cancer patients do not find comfort in pink October, instead we find it angering, like my page and wait for October. I think you'll soon understand.
Sunday, September 4, 2016
Dead iPhone
Did you think I was sick or dead? Who could blame you - it has been a long time since I've written. I'm not even sure where I left you in this grand saga of life, death, and daily trivialities.
I'm here but my iPhone has died. I've had an iPhone since they first came out in 2007, before diagnosis, and I've faithfully bought one every 2 years. I have been transferring everything over with each new purchase. And, my 6+ died, data gone, pictures gone, memories gone.
I'm still here, without my electronic helper. I do remember having a PET scan sometime this spring, which came out clean. NED, nada, no cancer. Lightening luck struck again.
It was last October 2015 that cancer had exploded through my system: abdomen, liver, many lymph nodes; it even creeped into my lungs. I thought my final destiny had arrived. I was calm at the thought of relapse, not freaked out or upset. My stomach dropped, and I knew what was coming, but I felt like I could have good luck again, which I did. Kadcyla entered and cleaned up the cancer like an OCD person cleans his hands. Scrubbed raw, no visible cells left.
Six months later, when what is now chronic pain intensified, yanking my intestines and kicking my ribs like a petulant child, I knew it was cancer returning and the Kadcyla giving up. Hence the springtime PET, which by the way, I had to fight the insurance company to get. I not only thought it was cancer returning - I was absolutely certain. I actually told people cancer was back, before I knew it was. I had no doubts at all, and started doing my planning again, refreshing my death papers, rewriting passwords, etc. I finally got the scan approval.
The PET showed I was clean.
I was shocked. I still had the mystery of the pain, which caused emotions I'm not proud of. Like frustration and anger. Yes, I was actually angry that I did not have cancer. I was mad that I didn't know what was going on with my body. I was embarrassed that I fought for a test that I didn't need. I was petulant when I told my doctor, "Since I don't know when pain is cancer or nothing, I'm not even mentioning it anymore." He gently said, "You have to."
I know it sounds crazy, to be mad at good news. I couldn't admit it to anyone, and I couldn't figure it out for myself. Given time, all I can come up with to explain this fury is when you wait for something for years, when you know what your fate is supposed to be and you believe now is the time - you can feel upset to discover you are wrong. Even when it's something horrible like cancer spreading.
I also questioned my entire place in the cancer community. Am I even a cancer patient anymore, really? I go in for chemo every three weeks, like a cancer patient. I have pain like a cancer patient. I have a port, I have fatigue, I have nausea and constipation. I am on my 9th chemo regimen. Look at all I've been through. But I don't have cancer now. I look healthy, I have more energy than ever. I have been NED almost as long as I've had cancer. So, where do I fit in now? I'm healthy AND sick?
What if I'm on the leading edge of people who survive metastatic breast cancer, thanks to immunotherapy? Doctors now say it is becoming a chronic disease, and perhaps that is so in my case. I was close to death, more than once. I never want cancer again, of course. And yet, in a strange way, my identity has become tied up with this disease, and in waiting to die. What if now I have something controllable, and its no longer a certain death?
Who am I then?
I felt angry: for not having a "place" anymore, for not being able to read my body, for not even being certain I did have a terminal illness anymore, for all of it. I was so angry - and so unable to explain it - I stopped blogging, stopped posting on facebook, stopped reading emails, stopped thinking.
I settled back to my life. The anger dissipated and I started to understand my feelings more. The pain lessened too, the meds worked better. So, I did household chores: I cleaned an organized my craft room. I painted and regrouted a bathroom, and painted and scrubbed the kitchen, things I've not been able to do for half a decade. I now have weekly hair blow-outs, even though I am still mostly at home. I get a monthly "art box" where I get a project to do. I turned my back on cancer, as much as I could.
But I needed to find a way to feel useful. I also need to make some money, so I am now crafting items to sell. This is complicated: I have to spend the money (a lot of money) to make the items, then once I get enough I have to figure out exactly how to sell them so it doesn't cost me too much or I can even make a profit (which looks less likely each day). Margins are already thin. But it is an interesting problem. (No, I don't want to do Etsy or eBay - paypal takes enough!).
I have written out a schedule of things I want to do, including some writing. I've had a booklet planned for years, designed to sell that I've never sat down to write. I also need more household things done - porches cleaned, flowers planted, weeding. I am trying to be productive, as if I had just retired early and wanted to be home instead of working.
October is coming and there are editorials to write. I am trying to get my chemo-addled brain functioning - I do a puzzle every day. I'm trying to get up at a more reasonable time. I am trying to remake a life that I'd previously given to disease. I still live for today, and appreciate each beautiful thing that happens. But now, I think about the future just as you healthy people do. I have made reservations to take my son and his wife to Vegas for his 30th birthday. I wonder who will speak at my younger son's graduation in 2 years. I am happy to hear that my older son and his wife will try for children in a year or so, and I even freaked out thinking that their child may not be in the elementary school down the street, so I can pick her up at 3:00. I am thinking that if we have money left when my son graduates college, my husband and I will take a trip somewhere we've never been. Maybe Europe. Maybe Australia. Maybe Bali.
I again worry that my husband, who is 11 years older than I am, will die first.
Normal. I'm not angry now, I have accepted my place, once again.
I wonder though - if Kadcyla stops working and cancer comes back, how will I feel? How many feet into normality do I step?
As I said above, my iPhone died, it just completely bricked. I couldn't get anything off of it before it went, and the genius bar people couldn't help me. I lost almost 8,000 photos, and all my contacts, my blog ideas, daily reminders. 9 years of my life gone.
So I have a choice: I can mourn what is in the past, what is lost, and maybe be angry that what I thought would happen did not. Or I can acknowledge it, take a deep breath, and start fresh.
Five years with mets, and I'm starting fresh.
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Thank you to those of you who use the Amazon box to the right to start your shopping. It helps me greatly. If you don't know, just start your search for anything on Amazon on my page and I get a small percentage of what your purchase.