Unbound Pagan Blog

Tuesday, November 22, 2016

Giving Thanks

With one day to go before my birthday, I had hoped to be home from the hospital, ready to enjoy some mashed potatoes with gravy, turkey and some other yumminess. No such luck. Having first wanted to ignore me altogether, the medical establishment is now determined to fix as much wrong with me as possible. For which I am grateful!

On today's medical agenda they will put a tube through my back to drain the right ureter that they couldn't see yesterday. I will then have a tube hanging out of my back into some bag, until it drains enough for them to see to put in a stent on that side. That will hopefully take care of the kidney issues.

On to the stoma...that horrible piece of mucus-covered penile-looking flesh that taunts me belly. I found a wonderful general surgeon who considers it no big deal to do that surgery to remove it, so that will happen on Friday morning, and hopefully not interfere with anyone's holiday plans. I hope to then be home that weekend. Finally. I will still have cancer, but my quality of life will be greatly improved.

I long to be home with my pups again, kicked back in my easy chair, watching TV and texting. Hopefully soon. And hopefully this plan won't change, unless to get better.  Happy Thanksgiving, all y'all!

Friday, November 18, 2016

No Surgery for You!

I just had a doctor tell me that due to severe anemia, I could have no surgery today. But more than that...no one would waste blood transfusions on a cancer patient. So no medical fix for the anemia either, now or in the future.

Back to the drawing board...

Friday, November 11, 2016

Stomas, Stents and Surgeries, Oh My!

I am once again regretfully long at updating this blog and therefore have many people wondering what the hell I got going on up in here. And, it's once again fairly late of an evening, when my hands are already shaky and I'm trying to navigate my sister's laughing commentary while repeating AGAIN that I'm trying to update the blog...there, that might do it.

About three weeks ago, a long piece of ... skin? tubing? insides of my body? began to protrude from the front of my stomach. This is called a "protracted stoma" and can happen frequently with someone who has a colostomy. I went to the surgeon about it and was advised that the only recourse was to have a surgery in which my body was relaxed, the stoma was pulled out as far as it would go and then trimmed and stitched so that basically it couldn't ever fall out again. This would mean that I could never have the colostomy reversed. As in, ever. But the surgeon swears that I would never be able to have it reversed anyway, because there was too much radiation damage from the previous cancer treatment. After also dealing with a couple of weeks of edema (swelling of the legs, ankles, etc), I decided to agree with him and that I can no longer deal with this mucilaginous penile lump protruding from my abdomen. It's disgusting. I'm tired of cleaning it off all the time, changing the bag all the time, etc. It's been horrible. I hate hugging people at the moment because I have to make sure they don't feel the penis poking out of me. (That really is kind of what it looks like. Sexy, right?)

So, edema and the stoma. At the same time, I'm supposed to be changing out the stent that leads to the left kidney. The trick here is that it is safer to get one surgery, rather than two and my surgeons are willing to do them together (first the stent, then the stoma or the reverse), but my urologist has a very busy schedule, so we are trying to coordinate that now. So I will have two surgeries at the same time basically and these things will finally be taken care of and no more of anything hanging off of the front of me. Hopefully no more discomfort from the stoma hanging out, swollen and heavy. Maybe a possibility to get healthier again? At least a new starting point! And this all means...

This all means that I will postpone the birthday party my dear friends have planned for me for next weekend. Not only am I still trying to get strong again (the edema and stoma situation threw me off of my medicines for a while and had me completely out of balance), but I also can't even imagine myself propped up on my friend's porch, holding court and trying to have fun while really feeling horrible and trying to act like I feel great. I have found it is much harder to be the person who feels bad but it doesn't show than to be the one where something does show. At least when it shows that you have something wrong with you, people don't say things like "Let's go eat!" not understanding that there is no way you can go to a restaurant. And I hate to disappoint people. Especially my friends. So I'm going to just let everyone know that we have to postpone and hopefully in a matter of weeks I will have a smooth front abdomen and a much stronger physique. And be happily eating out with friends!

I'm seriously not even strong enough to make it to Mexico or any of the clinics I found to help with the cancer treatment. I would have to have help even making it through an airport. Thankfully my sister could come up to help get me stronger again. And we are training my niece to help me get around the house if I need help. Blessed again with family and friends!! So much.

That's it for now. Just words. No fancy pictures. But enough hopefully to explain why nothing is happening in my life right now. At least you don't have a penis hanging off the front of you. Or if you do, you are supposed to. Or want to! LOL. Good luck with that. Personally I can do without it.

Love to you all. Let me know if you have questions!

Monday, September 5, 2016

And Then There Are Other Days

Now that I am five months into this whole new lifestyle, I find that it can be hard to describe what a typical day is like for me. Friends often ask if the cancer is giving me any pain, and while the answer to that is yes, it's definitely a qualified "yes." As in, well, I'm not sure if it's the cancer, or the colostomy, or the bladder or just the fact that I didn't eat anything yet, or something different that I ate or what. And I have to try to figure it out each time, because that helps me figure out what I need for the pain, if I need anything for the pain, and how to keep it from happening again, if possible. And here's the thing about managing pain: if you let it get away from you, it becomes much harder to control. They call it "chasing the pain," because you've waited too long and now the pain pill you took has to catch up to what you are already feeling, as well as keeping the pain from getting any worse. Take today, for example.

I've had some pain lately that could best be described as an achy coochy. (Is this a good time to remind you that sometimes my blog will tell you more than you wanted to know? Consider this a secondary warning.) What I mean is that when I sit down, I can feel an ache in the area from my colon to the front of my body where my bladder would be. I can't tell you exactly which thing is causing the pain, just that it sort of aches. Sometimes it isn't too bad. Other times I have to go sit on my bed on my hands and knees and rock myself back and forth while hoping that the pain pill I just took kicks in soon. Now, the usual plan is that I take a long-term pain pill in the morning that will last me through the day and then I can take another in 12 hours that will last me through the night. If I need something more, I can take a short-term pill that will hopefully keep me from "chasing the pain." When the pain is managed properly, I might notice an occasional twinge, but in general it isn't anything to keep me from doing things around the house or going places. I do, however, have some part of every single day where I feel some of this pain, so I'm still working on how to manage it properly.

Today I felt pretty good when I woke up, which was wonderful, because I was unable to sleep last night due to the pain until around 12:30 am. So to wake up and not feel too bad was great. I was able to straighten the house, put away dishes, clean out the fridge, clean out a shelf in my pantry, do some writing and a few other things. Then I felt tired, so I laid down for a little bit and took about an hour nap. When I woke up, I could feel the twinge that meant I would have some pain heading my way after a while. I tried not taking anything this time, and I can tell you that was the wrong choice. I've now lost about four hours to: take the long-term pill you didn't take in the morning, take a short-term pill to chase the pain, lay down and rock yourself to sleep for a little bit, drink a bunch of water in case that helps wash anything away that might be hurting you, eat an everything bagel in the hopes that will settle your stomach and keep it from getting any worse with the addition of heartburn or indigestion, lay back down again, try to watch some TV, change out all of your colostomy stuff, lay back down again, take an ibuprofen.

I have found in just the past couple of days that whatever this achy thing is, an ibuprofen or two does help it ease for a while. I think that's why it eased up during the night, because I finally took two ibuprofen (not one of my usual pills). So now it is mid-afternoon, and at this rate I doubt I'll get anything much done for the rest of the day, but I can at least sit here for a bit without crying or rocking myself. There are bubbles going back and forth in my colostomy, so I suspect I have some sort of upset going on with that. The goal now is to keep myself in balance by taking my evening pill on time as I should and monitoring the rest of it in case I need another ibuprofen. I think some of this is nutritional as well, as I've eaten differently over the past few days and I haven't made my organic juice as I should. It's easy to say you are going to do everything perfectly to heal yourself when you are in this situation, but trust me, you will have days where you just cannot bring yourself to make juice or sort pills or whatever, and you have to force yourself to do the right thing and say no to that dessert or yes to getting up and making that juice in the morning.

And then, after a few hours of feeling like crap and fighting the pain, you will rededicate yourself to the plan you have built to cure your disease. As in, tomorrow morning I can guarantee you that I will be back on the straight and narrow when it comes to making and drinking my organic juice. There is almost nothing that three days of organic juice fasting won't set right again, so that's what I will do. It helps to continually evaluate your goals as well. For me, it isn't enough to see myself healed at some random point in the future. I have family moving in with me in October, so my goals are built around that. What I would really like to happen is to continue with my protocols through September and October and then have a scan in November that will show NO tumor in my abdomen. And once that tumor is gone, that means I can have the colostomy re-routed back to where colons are supposed to go. It also means I could have the stent removed from my left ureter. With the stent removed and the colon back to normal, that would remove two serious causes of pain in my abdomen, making it a lot easier to define what is hurting me and what is healing and coming back to "normal." And since I would then have family living here, I would have the help I needed for taking care of dogs and house and such, if I have those surgeries. And you know I love it when a plan comes together.

I feel very positive, despite the hours of pain and the daily efforts to figure out my body, that I can heal, that the tumor in my abdomen right now is shrinking and will disappear, that I may need to spend a lifetime staying on top of these bad cells but that it CAN be done. I don't know what it will mean in the long term, as it does seem odd to get a death sentence only to find myself healthier at the end of it than ever before. Not sure how I will explain that to everyone, but I know my loved ones will be happy for it, even if it is unexpected. And if I got run over by a Dolly Madison truck tomorrow crossing the street? Well, at least I was happy and hopeful today! And that's what counts.

Some days all you can do is nap until you feel better.

Wednesday, August 31, 2016

How Can It Already Be September?

It seems, these days, that my life is segmented by "when I got the news" or "how long since I got the news." It's hard to behave otherwise, even when you have no intention of bowing to some random prognosis on how long you should live.

The BIG DATE for me is really April 10th, when I woke up from surgery to find that I was supposed to think completely differently about my own lifespan. And now that I look back on those first few days, I realize I was so determined to accept whatever fate I had in store that I was quite abrupt when telling others. I needed my friends and family to immediately accept that I might evolve more quickly than I would want, because I didn't want anyone to fight me on it, or tell me every time they saw me that maybe I wouldn't die after all. And it's actually pretty easy, when in pain, to keep your mind on moving along and not getting stuck in some painful life of disease or injury. Very matter-of-fact, this-is-it, after a while I won't be here anymore. But then you start to work on what you can...nutrition, exercise, emotional health, even just sleeping well. And before you know it, your mind is on what else you can do to better your health and cure yourself, and that date they gave you...the one that hovers in the back of your mind all of the time...kind of fades away.

August came and went mostly in a haze of sleepiness. When the month started, I had every intention of at least finishing my current novel, and potentially doing many things around the house as well. But each day I would get up and take care of my babies, and then I would lay down for a mid-morning nap, and somehow I fell into a routine of sleeping where I was only awake every few hours. I worried over this some, but my lovely Hosparus ladies assured me that if I felt like sleeping I should just sleep, that it wasn't going to harm me to nap throughout the day. So that's what I did. Before I knew it, August was mostly over and somehow I wasn't sleeping as much during the day anymore. To be honest, I can barely remember June and July. I know that I only had one more colostomy issue and that Hosparus came and helped me through it, so I didn't end up in the ER again. And I visited the urologist again because the stent was giving me some pain. (Apparently that's what stents do, and they just didn't mention it before, so of course I am now praying the tumor goes away so that the stent can be removed and I won't have to feel that anymore. I would also like to reverse the colostomy, but that will depend on the tumor, and my general health, as well. Most of the powers that be don't want to discuss anything like that because I'm supposed to be accepting my fate and not wishing for healing instead, but tell you what: I'll wish for what I want and to hell with what I'm supposed to be doing. And what I want is to heal and not be in pain anymore.)

I had the usual wonderful visitors, friends who came to chat for a while of an early evening, or who got together with me during a weekend day to get out for a while. One set of friends came and picked me up and took me to the gambling boat, where they wheeled me around in a wheelchair and I had a fabulous time without getting worn out. Another friend, after hearing me go on and on about the possibility of living in an RV if I make it through this cancer thing, found a toy RV that I could play with..you can rearrange the furniture and layout and take off the roof of the RV...too much fun.

I had other friends I hadn't seen yet who came with flowers or food to cheer me up, not that I've turned lugubrious. I'm actually in pretty good spirits most of the time. I'm looking forward to the fall, because I will have some family moving in, thus providing companionship whenever I want. I'm trying to make sure I get out and about socially at least once every two weeks, which is more than I was doing before all this happened. I've gone out to the movies (proving that I can go sit for a couple of hours somewhere without it being too much for me) and out to eat. And I regularly now get my own groceries, gas, various and sundry without any help. I'm still having a bit of trouble with getting yard work done, but that has to do more with the hot weather than my energy levels. I just can't do as much when it's hot. The next few days are supposed to be cooler, so I'm hoping to do a little each day and get the yard shaped up a bit. I know I can call on friends to help if I want, but I'm hoping to have some energy to do it myself this time around.

And everyone keeps asking for updates, because I've been bad about keeping this blog updated. It's hard to explain that I'm doing well, but slept too much to write in my blog the day before. Or that I really don't have much to tell since I haven't been anywhere or done anything. I will make a concerted effort to post the minutia, now that September is already here and asking what is next. Now that my energy seems to be returning somewhat, I'm hopeful I will have more to tell. Since I haven't done much in the past couple of months, most of my news is simply what I've done to try to help cure myself. In July and August, I followed several cancer protocols pretty strictly. I have a list of supplements that are supposed to help combat the cancerous cells and strengthen my immunity and nutrition, so I've been taking those daily. I got a little old lady's weekly pill box to put the pills in, things like D3, Vitamin C, CoQ10, resveratrol, aged garlic, and the CBD oil I found at the local health food store (think marijuana without the THC high...it would be better with the high, but much less legal). I also found a water pitcher with a filter that removes flouride, chlorine, etc. from tap water, because everything I was reading said to stop drinking tap water and drink spring water instead. No way I'm buying all those plastic bottles, so finding the pitcher was a real coup. One filter should last me six months, and I'm drinking as much water as I can to flush my system. I've also just added the Budwig Protocol, which was discovered by a doctor. It consists of blending flax seed oil with cottage cheese and eating it immediately so that the nutrients and oxygen make their way into your cancerous cells. And no sugar! Sugar feeds cancer cells and makes them nice and strong, so I've had to cut out sugar as much as possible. I have been eating an organic watermelon every week though, counting that as a good sugar because I have gotten addicted to them. But watermelon season is almost over, so that will end soon. Oh, and I have an organic juice every day, usually 48 to 64 ounces. So yummy!

So I do have a plan for September, now that I'm thinking in terms of "plans" again. I want to adhere to my cancer protocols strictly so that I give my body the best chance of healing. I want to add some exercise, since I haven't been moving around much at all. Even to just lift some arm weights while watching TV would help me (and thanks to my pal David for that advice, as well as the yummy cranberry juice he brought over). Getting an occasional walk around the block would be even better! While focusing on my health, nutrition and exercise, I want to finish "The Bob Hollow Girls," so that I can get that novel out in October and have that as an accomplishment at least. And I will need to do some work on the house for my niece and her husband before they move in. I would be so very happy if the fall brings me a surcease from some of the abdominal and bladder pain that I have along with some extra energy to keep going.

I don't really see any reason I shouldn't be able to help heal myself. All of these protocols will make me stronger without bringing me to any harm. And what's the alternative? To do nothing? That would just be silly. My body needs strong nutrients and that's what I'm going to give it. Hopefully along the way will be more tales of friendly visits, finished books and connection with family. I think I'll get back to my photography as well and start posting a photo a day to Instagram or Ello. Think of it this way: I can't go to work at a regular job. I can't really do anything but the very things I've wanted to do for the last few years anyway, which are to write and to create art. Maybe rather than looking at this with some defeatist attitude I should look at it as getting exactly what I asked for, only now I do have to work on optimal health as well. We should all treat life like this, yes? Do the things you love while focusing on your health and nutrition? Yes! That's it exactly.