Sorry for the lack of photos lately (this one was taken last week during my brief encounter at home), but this is my so often view of our loving living room. That gray thing in front be Tonto's fat butt.
I'm so thankful to finally be at home and not to be in nearly the amount pain that I was in a week ago. It's such a total blessing! I'm still suffering from immense pain but am dealing with the pain waves as I get them with medication and meditation.
My body is slowly mending; but I still am still unable to eat anything really normal just yet. My bowels are a bit unpredictable and so is my bladder and kidneys for that matter; at least I have my life!) I can't go on long trips and it's a good thing for maxi pads. I really thought I was over with those things, but since things are a bit unpredictable right now; I would much rather be wearing those than diapers. I can't get myself there yet; I feel I am too old and yet too young for them! Gee! Imagine that!
I also feel that this chemo might be a little easier to take; although like most chemos; it does break out my face in raging zits but zits have never killed me; just have to double up on the zit cream. My immune system is very low so in cases like these, so there is no picking on my face or even touching it; hands off! I'm supposed to be done with breaking out like a teenager; but not while on chemo! I have my next treatment on Sunday at 2:15pm and I have to get my blood test done on Friday and no later than Saturday at 11am. We did notice that the tumors on top of right rib cage just might be shrinking (it could just be psychological) but in that case I will also include some meditation in my chemo treatments.
It's been hard on my husband to have to leave me to go to work during the day because he knows me so well. He really wants to be there for me in case I have any pain or if I need anything done; he doesn't want me to have to do it myself; especially if it involves any physical labor. I get all this ambition built up and sometimes I have a way of overdoing it on myself. I hate that this cancer and sickness makes me feel so useless sometimes; like I can't get any of my old chores done like laundry, cooking, cleaning, and so much more.
On Tuesday, I didn't overdo it at all and did what I needed which was rest for most of the day. Today was a little different. I have not been receiving any disability payments (no paychecks) since June so our bank account is slowly dwindling just like many Americans. We are seeing what the greedy insurance companies are doing as well as many in the medical field are also doing. The health care system really does need an overhaul and those who just keep getting richer and richer off the current system; it really needs to change. We little people often end up paying the heavy price for it all. It's just not fair. I have no idea why people are so scared of changing this obviously broken system. Why should so many not benefit at all the way that it is now? Pre-existing conditions, fear of being dropped from becoming too ill, a cap to how much your health care can cost, people loosing their homes and much more over medical bills. I don't understand it and I see so many holes in this system that this will fix. Why the hell not?
One example is that we are getting too many supplies sent to us and we see what our insurance is being billed ($3000 per bag of food and we had to throw out 3 bags today= $9000), we get these little red plastic thingys that serve no purpose at all; they are individually wrapped in lots of plastic and cost around $8 a piece, and I could easily go on and on. Even down to my medications; I feel I am prescribed way too much and the costs of those medications are astronomical. I have bottles and bottles of full medications that I am not using that cost a fortune for my insurance company. Those ridiculous costs pad quite a few pockets and it's not all research those costs are going to at all. Our Healthcare is a joke; it's absolutely ridiculous and it really needs to be fixed. This will give us more choices and will not take away at all from the current system at all.
I wished that my doctor could include some alternative treatments with my current chemo treatments in order to give me more of a fighting chance at survival; but he isn't allowed to because of insurance companies and written procedures where he could loose his job over money not being made by prescribing me more. I am not allowed to have a fighting chance and that is the truth. He has to not know about the current vitamins and minerals that help my body's immune system get stronger. They could easily just pump me full of more chemo until it kills me; but I'm doing my homework and finding other ways to make my body strong enough so that I have a fighting chance.
It's not going to get any better if we do nothing at all and I have much trust in our President no matter what these whack jobs are saying. I see the lies and have read over the health plan over and over again and much of what they say is totally false and completely made up. Give me a break; Obama Lies, Grandma dies? What the hell is that? Who made that up? That's the lies I can't get over that these greedy bastards are putting out there (there really are people ignorant enough who really do believe it just because someone says it); all so that they can make millions more salary off of us. That is the honest truth; they must lie to protect their greed. I was born in Missouri and I don't always believe everything that I hear and apparently there are plenty that do. They need no proof; if someone says it; no matter who; they will believe it. I'm a little more skeptical and hard headed and I usually need to see it in writing or Research proof. It just makes me so sick. We really do need change here and too many are doing without and many paying the ultimate price for it while these select few are making billions off the broken system.
Well this morning I managed to go over to the grocery store to get me some icky shitty baby food to eat; some ice cream (kinda yum = not there yet) and some stuff to make sandwiches for my honey when he comes home to free me from the TPN. What a huge responsibility he has just to take care of me each day. He has to flush my IV like 3 times (2 in my bloodline, 1 for my food line) when he comes home for lunch and the least I can do is have a nice lunch waiting for him. Then when he gets home from work he has to pull out a bag of food to set for 3-4 hours; I let him rest or do what he needs to do to relax for several hours before he has to hook me back up to the TPN machine and bag. He has to prep the bag by adding all kinds of stuff with syringes; like vitamins and stuff; then prep the line; he has to wear gloves; then flushes both IVs and changes the cap thing? It's a lengthy process that is too long to video tape. It takes about 25 -30 minutes or so to prep.
Well after my honey left at lunchtime; I had some important errands to run; to prove to an Insurance Company that I am indeed disabled by going through a list of procedures (making photocopies and digging around for necessary information (last 2 disability payments received), and medical records for all of this year. It would cost me a fortune to get copies of all of that; so I don't know yet if I am supposed to pay for that or the insurance company? I think they are?. I had to drive over to the hospital and I purposely did not take anything for pain the entire day just so that I could drive. I only had to sit in the Business office for about an hour but I did get to talk on the phone with my mom and let her know I am doing OK; healing slowly and doing my chemo.
Life might seem a bit boring for me at this moment but I am always surprised and wowwed by the small things right now; just by being out of the hospital and having the freedom just to go outside in the sunshine and I even got to drive in my car today! It's the first time in over 3 weeks; perhaps me and Blue Belle can get it washed tomorrow! I wasn't in much of a hurry and didn't have a reason to be like so many out there. If so many drivers had ever been in my shoes; I am positive there would be much less road rage.
So many people seem to be in a hurry to live their lives; should just enjoy the moment that you are given. I had probably all red lights (both trips and those are long red lights on Lawrence Expressway!)and I enjoyed each moment no matter what. I kept reminding myself; I am not in that hospital and I'm free (no TPN bag). I also had plenty of music on my iPod to listen to.
So many people seem to be in a hurry to live their lives; should just enjoy the moment that you are given. I had probably all red lights (both trips and those are long red lights on Lawrence Expressway!)and I enjoyed each moment no matter what. I kept reminding myself; I am not in that hospital and I'm free (no TPN bag). I also had plenty of music on my iPod to listen to.
I am a little worried I must admit over how long this Picc line will be in and how long I have to be eating liquid intravenous food. I have to admit sometimes I have my little crying jags where I get scared but I use them to release all that negative energy and just remind myself of how much fun I did get to have this year. I pray that I don't have to be on chemo for the snowboard season and can get this Picc line removed by then. I bet it would be much uncomfortable under my snowboard jacket and getting all these things caught up in there?!
I tried to watch one of Quinton Tarrontino's slasher films about the stunt car driver who likes to go on murderous rampages but had to change the channel; while I love his 70's style of film; I can't get myself to dig the blood and guts; probably because I've been gutted enough this year and watching the crashes made my pain really intense. I couldn't do it. At least we have "I love you Man!" to watch tomorrow night on DVD! I need to stick with the happy uplifting films from now on!) On to more healing and fun with my honey!)
I tried to watch one of Quinton Tarrontino's slasher films about the stunt car driver who likes to go on murderous rampages but had to change the channel; while I love his 70's style of film; I can't get myself to dig the blood and guts; probably because I've been gutted enough this year and watching the crashes made my pain really intense. I couldn't do it. At least we have "I love you Man!" to watch tomorrow night on DVD! I need to stick with the happy uplifting films from now on!) On to more healing and fun with my honey!)
3 comments:
yay! good to hear you're feeling a bit better. I must admit, I am horrified by what's going on over there re; the medical system change. I don't really understand why people are fighting it and saying such peculiar things? They must all be very fit and healthy and feel themselves in no danger of ever needing the health care that we have needed. Or, as you say, very wealthy, so they just don't care.
It's like a world gone mad? Doesn't anyone realise that medical attention [affordable for ALL] should be a right? Uff...I read some of the slanderous newspaper articles [I think Nat posted one on FB] and my eyes almost popped out.
It makes me realise again and again how lucky we are in the UK. Our system is not perfect by any stretch, but I have never had to worry even ONCE that I will lose my home, not get a scan due to insurance companies etc etc. I detest insurance companies actually, and can’t imagine the horror of relying on them to advocate my health care. What a thought.
I do hope you get the change you need. Sooner rather than later. In the meantime, you get better so you can enjoy it when it comes
x
We could all learn a lesson from you to enjoy our time @ red lights, it's time and it's given to us so we should enjoy it.
I feel for you with all the medicine iv's etc but as always your spirits are an inspiration to all of us.
For all that you're going through, I so admire your positive outlook. I can identify with living each day as full as possible and that the small things in life are so appreciated. Keep fighting with your chin held high. You're an inspiration! I'm sending positive thoughts your way and praying for you.
Marilyn
Diagnosed October 2008 Stage 3 Pancreatic Cancer
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