Well, I had my 5th port installed yesterday. Actually my 3rd port. I have had 3 ports and 2 PICC lines in one year. Ridiculous!
The procedure went really well. It was the easiest of all of them because it was the first time that I was listened to, and it was the first time that I was knocked out on the table. I don't remember a thing and that is just fine with me!
Each time, before the procedure I have told them that the sedation drugs did not sedate me and I was completely awake during the procedure. The last two times I laid on the operating table sobbing, watching my blood dripping down the sheets, begging them to knock me out. I was not heard. They all literally ignored me. It has been incredibly frustrating and stressful. So much so that I think I may have a touch of PTSD from these procedures combined with the 3 surgeries. My body is so gun-shy to touch now that it is hard for me to relax enough to let even my fiance get near me! But just like everything else, I am working on it.
So anyway, this time I've got something called a "slim port." It is much smaller than the last 2. I did not know they existed until recently, and I am still not clear as to why they did not put this small port made for small people into my very small person the first time around. Had they done that, it may have saved the other two from having to be pulled out, or in the last case, saving me a hospital stay due to the port literally being pushed out by my body.
So the 5th time's a ridiculous charm. I am sore today but nothing intolerable at all unless I accidentally touch it. Once the stitches heal, I will have another scar to add to the collection as well.
Ultimately though I am glad to have one because it saves my arms the torture of multiple sticks each visit. My arm veins are shot, and unfortunately chemo must continue. My bloodwork was up a bit at the last draw, but my doctor chalks that up to the infections and the time I have had to be off of chemo. My pain levels have gone down quite a bit recently, so that is a great sign. I will hopefully have a more accurate picture as far as my labs are concerned in the next few weeks.
So that's that. 5th port down and ready to go.
I should mention that I have started several new supplements recently. John and I went to visit an Amish doctor in the backwoods of Kentucky a couple of weeks ago. Google maps took us driving through a creek bed and John had to rebuild the road with rocks so that we could pass. Here's a photo of that debacle.
The Amish doctor gave me a detailed protocol to follow.
I have added Pau d'arco, a supplement called PCC, (which has basically the same ingredients as Essiac tea which I also take twice daily) and Apricot (b17). I take these along with many more 3x daily. I also rub the apricot tincture and a sanicle tincture on my abdomen 3x daily. I take bioidentical progesterone, testosterone, and a form of estrogen called 2-methoxyestradiol as well. Unlike regular estradiol, 2ME has been shown to have anti cancer effects. They have actually made it into a cancer drug called Panzem.
Along with supplements and chemo I do infrared sauna, rebounding, hyberbaric chamber, and my magnetic and silver pulser sessions each day. It is a tough schedule, but its keeping me stable for the time being.
I will post a more detailed supplement/protocol list if anything works for me longer than a couple months. I have to change things quite often. I think its important to keep notes and share what is helping and whats not. I will tell you that I started a supplement called Restore a few months back and it has helped me tremendously with my food sensitivity issues. I was not able to eat much of anything without terrible stomach pain before I started taking it. The pain would wake me up at night, and was seriously disrupting my sleep. I also paid dearly if I ate even one bite of something with dairy or gluten, and now I can get away with both once in awhile. So if you have digestive/leaky gut issues, I highly recommend!
My dad and stepmom are singing its praises as well. You can order it at restore4life.com. Another honorable mention is Dr. Axe's Bone Broth Protein. I have tried Soooo many protein powders, and could not seem to find one that didn't leave a heavy sick feeling in my stomach. I recently found this one, and it is Awesome! I know bone broth is amazing for me, and I have tried many times to get on a cooking/sipping schedule, but I have just not been able to stick to it, so this is also a great way to get all the benefits of broth. It has 20 grams of protein per scoop and it's sweetened with stevia. It comes in vanilla, turmeric, and pure flavor. I use the vanilla for shakes and the turmeric in my cooking to add extra nutrients to our food. You can get it on Dr. Axe's website or on Amazon. It's cheaper on Amazon.
So now on to the next topic: PERMANENT DISABILITY (spoken in a deep enthusiastic movie voice)
PERMANENT DISABILITY
I used to be terrified of handicapped spots. I wouldn't step on them when walking in parking lots, and if I did I would think about it all day. "Damn I shouldn't have stepped on that handicapped spot." or "Yep, this is because I stepped on that handicapped spot earlier." I had a bit of OCD back in the day, and that was one of my things. No handicapped spots. I wouldn't let people I loved walk over them either. All that avoidance of handicapped spots and look what's happened! I still managed to acquire a handicap. One could also argue that all that thinking about handicap spots creating a handicap actually eventually created a handicap for me.
I also had to walk on the left side of people, always. I still do that. I don't know why, but it is incredibly uncomfortable for me if I am walking with someone and they are on my left side. I can't focus on conversation. All I can think about is the fact that the walking arrangement is very wrong and if I try to not focus on it, it becomes all that I think about until I eventually end up interrupting the conversation and say something like, "can we switch sides?" John is so used to it now that its just automatic. He knows not to walk on that side and he never does. Just one of the million reasons why I love him. He loves me despite my neurotic behaviors. For the first couple of years that we were together he did try to break my habit, but it never worked so he eventually just gave up.
So anyway, you can understand why after 2 years, I had still not applied for what is rightfully mine, the ability to get the VIP spots. To be done dragging my exhausted carcass across the parking lot, too tired to remember everything that I came for once I made it in the store.
I also don't think of myself as disabled, and I like being treated like a normal person when I am out, but as the next round of chemo approaches and I think about how tired I get, I decided to go for it. So today I did it. I got my little blue card with a sparkly little handicapped man on it, and I hung it on my rear-view. After completing a couple of errands today, I cannot believe I waited this long.
Unfortunately and fortunately I have become a pro at not looking sick. Maybe it's the southern belle in me, but I don't like going out in public without makeup and a wig on. So aside from my weight, I don't really look sick, even though a lot of the time I FEEL very sick. My grandma instilled that into me early on. She had cancer when I was young and I never saw her without hair and a full face of makeup. She did it even better than me. She cooked, cleaned, and looked that way while sitting in her house. She may not have done all of that when I wasn't around, I don't know, but looking back on it, she is pretty much my hero. When I am at home I look like I don't have a home. I clean the house as best I can, but with a toddler running around, most of the time it's a mess, and cooking is not the joy for me it used to be.
I have become able to tolerate a feeling of sickness that would probably leave most people in their beds unable to function. That's just one of the superpowers that someone with a chronic illness like cancer eventually discovers if it goes on long enough. If I am having a "good day" and I go get groceries, even though it hurts lifting those bags into that trunk, by God I am going to do it, and make it look effortless. Even though I am so exhausted that I am out of breath pushing that cart, I am going to lean on that damn thing using it as a makeshift walker and I'm going to coast around the store making it look like I am having a good ole time! That's just the way I am. Does it mean that I don't deserve that parking pass because I like to look like a normal person when I am out doing normal person things? Does someone have to be unable to walk to be considered handicapped or disabled?
So I am preparing myself for the dirty looks, possible hate mail attached to my windshield, and who knows, maybe full on confrontation. I have thought of several different ways of handling these situations, should they occur, some of them involve violence, all involve making the attacker look like a total asshole. I read stories about it all the time. Disability has many different forms! I can think of several different dis-eases off the top of my head where someone "looks fine" but struggles hard every day to accomplish normal everyday tasks. So anyway, should that happen I will most definitely write about it.
Well i'm off to bed now. If you are reading this, I'd like to remind you to remember that things aren't always what they seem. Don't be a judgemental asshole. You never know what the person you are judging is going through. Who am I to tell you what to do? Judge away. Be the big ole rain cloud in someones already stormy life. Be a big ole turd in someones bowl. But if you do it to me, I will look you RIGHT IN THE EYE. I might even throw something at you, who knows. But I am taking testosterone, sooooo.....Just sayin'. You may not want to go there.