My take on life is most likely not what everyone else sees. Things that used to be very important to me are way back in the background, and different things are up front now. First lets take my morning routine. I wake up a little later now than I used to because I get up every few hours throughout the night. After each four-hour ‘nap’ I try to do one or two things that I would have before waited for the afternoon to get working on. Then there’s sleep its self. I have to take pills for this that and the other(right now I have pneumonia again) that usually makes me a little sleepy so the four-hour sleep thing actually works out fine. I would have thought that only sleeping in four-hour intervals would make me tired all the time, but it gives me a little bit of time after each four hours to do a few things. This morning I woke up and had a cup of coffee and read a few pages of my book and decided that I might have enough energy left to knock out a quick post.
I know I’ll have to write it quickly because I’m already getting tired, hopefully the coffee will help with that so that I can stay up a while longer. I have my M&Ms too so one more cup of coffee and I’ll be fine . I have a friend who I haven’t seen in a few months that showed up a few days ago and wanted to know if it was all right if she came to stay with me for a while to help with all of the housework and to keep me company. It’s nice to have people come over to see what they can do to help us out. We need help all the time so we have friends coming and going throughout the days. Some just come to keep me company and those are the ones who can’t help with any other needs. I think that kind of help is so precious. I’m not one who normally likes to have a lot of people around the house because I’m embarrassed that my house isn’t always clean anymore. That doesn’t seem important these days. I told her that she’s welcome to come and help out for a while. She should be here sometime today.
Then we have the bills. I can’t ever find the words to convey how embarrassing it is to have to admit that we can’t make ends meet anymore. I’ve always hated having to admit that we need help but I’m putting my pride away and asking for help in different ways. First we just signed up for state services for food and health insurance for Rick, he needs to be able to keep taking care of his heart. He went for over a week without taking his heart pills and never told me because he knew we had no way to come up with enough money to pay for his meds. We now have decided that we can’t just go without some things.
I’m setting up a way for people to help us financially if they want to. I think Elaine is working on a way for people to help in different ways. Some want to mail a check and some want to pay bills directly, and some just want to send cash or a money order. Elaine will make sure that if you want to help financially then it will be excepted in whatever form you wish. I think that letting people send us money is right up there at the top of embarrassing/humiliating. I’ve come to accept that it’s alright for me to say when we need help, and boy do we need help! Like I’ve said before we have helped so many other families when we were able to over the years and I wish I knew how hard it was for the people we were helping. I always just figured that they were happy to have some financial relief and that was the end of it. Well, that is so not the end of it. I remember feeling so happy about giving people whatever they needed, but I think that now its my time to learn how other people feel about having to except charity. Thank God we’ve never had or used credit cards, I don’t like to make payments on things, so if we didn’t have the cash to purchase anything we just saved up for things.
I think that I missed this entire Christmas season because I did everything but hide in my bed to stay away from people. I wanted my family to have a good time, but I think that I could have helped to make it a better holiday, even without any money. I know that my mood swings are coming from all the meds and the pain I’m going through. I’m so used to having a lot of pain but this is way more than what I’ve ever had to deal with…and it’s only going to get worse. I did finally get my mother to agree to take me to make my final arrangements while I’m able to have a say in everything. Of course I have a long time to go yet but I didn’t want to wait until I can’t go with the family to choose what I want. Rick and mom need to make theirs as well. I don’t think that anyone should wait until their too sick to go and have a say in their own final wishes.
I might think about things differently now but it’s only because I don’t want all the difficult things left for other people to take care of. My muscles are all very stiff when I wake up…every time I wake up, but then it gets a little better as I get up and move around a little bit. I get very excited when I’m able to finish any chore on my own, and I make sure that everyone in the house at the time knows that I accomplished something on my own. Here is a recent pic that was taken just hours before my sister Elaine left to go back go back to NC.:
I had the most pleasurable stay in my new Hospice inpatient unit lately and just arrived home Christmas day…I think. I don’t remember things very well anymore so if you need info on anything that is important, for God’s sake don’t ask me. I was having uncontrolled pain so the hospice team thought that I should be under their care at a facility that I know was supposed to be in kind-of-a hospital setting…but it was really more like a resort.
I was in such terrible pain when I arrived there, and it took an entire day to get the Medical Director in there to see me (he thought he should be the one seeing me because all of my prior medical issues with getting the right treatment) and then I waited hours for a nurse to come that was trained to hook up my port to give them IV access. It seemed then like it took forever, but considering what they were able to accomplish, it was a very short time after all.After all of that and a few more hours to have the meds delivered…they did it. They knocked down my pain level to a level that it hasn’t been in years. I’ve told you all about the tumor pressing on nerves (my own conclusion by the way) but when I told the Medical Director where all I was having pain he said that I was absolutely right.
It’s not often that any Dr would agree with me but this one did a through medical exam and after feeling the tumor he actually said “Oh my God! that’s way bigger than on the scan” Finally someone listened to me and understood that I knew what my future was looking like. It only took a few minutes for him to decide to give me the only medicine that has ever work on pain for me and he ordered that I have a Patient Controlled analgesic pump. He actually told me he was going to give me higher and higher doses of it until I felt better. I didn’t want to be in a haze and he didn’t want me sleeping all the time so we found the right amount that worked for me.
Now I’m home again. I did have to go in another time to increase the dose, but I think I’ve found the right amount of medicine to continue to let me function.
Now, when I say function, I don’t mean doing anything that takes much energy at all. I’ve had to have a hospital bed brought in because I can’t climb the stairs in my house without hurting myself.
I keep trying to do more around the house but I only end up hurting myself.My sister Elaine has come from NC to help out for a few weeks and my friend Diane has been here a lot decorating and cleaning.
This month I’m focusing on trying to raise money to pay some bills that I just can’t put off anymore. I did manage to get together enough money to pay all of the household bills…now I have to get my car paid for. I own my car free and clear…However it has a repair that has to be done before I can take it to get current registration. Rick called the insurance company to let them and the department of motor vehicle to let them know that the car isn’t being driven because of repair issues.
I’m trying to find a way to set up a legitimate bank account for people to donate into (so they know that this is all above table). I’ve done fund-raisers before but never for myself, so I’m at a loss as to how to start it. In the past I would always choose families for Christmas or friends of our kids’ families and have car washes. Now I know how it feels to have to ask for help, and it’s a horrible gut wrenching feeling that I don’t wish on anyone.
Hopefully it isn’t too late to talk to Santa?
I feel pretty good so far today, and I haven’t even had any M&Ms this morning either. I was looking through the grocery store adds the other day and noticed that ice cream was on sale so of course I had to have some. I sent Rick to the store with the ad and gave him complete control over what kind he was to buy for me, and he came home with three kinds that I wouldn’t usually buy. All three had some kind of chocolate in them, however I did find that there was one that I particularly liked a lot. It was coffee flavored with Oreos broken up in it. How perfect is that? I think I have a new favorite now. I’m one of those people who always buys the same things all the time because I don’t want to find out after I’ve spent money on something that I didn’t like it, but Rick likes to try new things. I do end up eating whatever he orders when we go out to dinner because I always order the same thing, so his always looks better than mine does. Other than being extremely hot yesterday and today I’ve been feeling pretty good. Not too much pain and no problems so I need to take advantage of this good mood and try to do some things today. I’ve decided to start collecting baby things for my grand baby who’s coming in April. I don’t like to wait until the last-minute to do things, so I think that if I get started now I’ll have lots of stuff, most of which probably won’t be necessary items but this should be fun. My mother suggested that every time we go to Sam’s Club I buy a case of diapers so that won’t be an expense that is put off. I can’t believe how expensive everything for babies is now. If you plan on feeding your baby expect to go into debt, and fast. I like to take my time a collect things that look new but don’t cost an arm and a leg. I really don’t have any extra limbs at this point anyway. 😉 And I want to help our son as much as we can because I remember how terrible it can be to have a need for anything for a child and not be able to just go out and buy it. I see having a grand child as being a second chance to help my kids and to show them what things I would have done differently to make things better for them. I want to collect lots of books for the new baby, that’s something that I didn’t have a lot of for my kids but I think that it’s important to start reading to them as soon possible. I wanna get started on my day as soon as possible so I’m going to cut this post a bit short, but I just wanted to make sure that everyone knew that I was doing just fine and I’m about to have ice cream for breakfast. Maybe it will help me to cool off a little. This pic is my Rick with my brother Jason’s son Parker…we need another one of these to play with and spoil.
I’m feeling OK this morning, although I just woke up and I’m already tired. I had an interesting phone call yesterday from someone who was angry with me that I hadn’t told them about my tumor. It took me off guard because I had told this person about it the day that I found out about it and even took them the copy that I had of the report. I guess someone else had gone to this person recently and made a big deal about it and so I was getting yelled at for not making a bigger deal of it myself. I thought that I had explained everything well enough…I guess I was wrong. I didn’t feel the need to flip out about it and it wasn’t a big surprise anyway but how this person didn’t understand the word tumor when I first said it is beyond me. People tend to hear what they want to hear, at least that’s my experience lately, and I won’t be making a bigger deal of anything just to make a point. I was under the impression that everyone that I know has been reading everything that I write on here too, so again…I don’t think I was being secretive about anything. I had been asked by a family member to try not to upset everyone all the time and to try to be careful about how I say things, so that I don’t cause a panic. And I think that I have been careful with my words while still being completely honest about everything. I know that what I write on here could do a lot of harm, and that isn’t what I want at all. I just wanted to not have to repeat myself over and over again every time I find out something new. So, for clarity’s sake, let me be very clear on what’s happening with me lately. I’m mostly just tired and bitchy and don’t have too much pain, and what pain I do have is being managed very well. I do have a small tumor growing back right where the last ones were under my arm and it’s been there since my last surgery. There isn’t a chemo being suggested because I already had the chemo that would have been used on this kind of cancer and they don’t give it to anyone twice because of the damage it does to your organs. My lungs are doing OK, although I still have a cough all the time because of all the damage that I have from the chemo that I had before. As far as I know, there’s no need for panic at all. I’m doing fine right now. I could use more M&Ms though. I keep running out and I don’t notice my dish getting empty until I have just a few left. I really need to make it up to Sam’s Club Monday. We might be going near there on Monday anyway because Rick thinks that we have another defective karaoke machine. I’ve had to return three different machines in the past two years, luckily they were all under warranty so it didn’t cost us anything but time to get them replaced. I think we’re going to have to ask for another brand because it’s hard to believe that I’m getting all the defective machines, and we don’t really use it enough to burn out the lasers that fast. Singing makes me feel better so I don’t like going to turn on the machine and not being able to use it every time. I’m not OK with it only working when it feels like working. I think I should get a few free songs for all the trouble we’ve had from this machine, but I doubt that’s going to happen. Rick stepped into the pool yesterday and stepped right back out, apparently it has gotten too cold for swimming anymore, but I don’t care how cold it is as long as it’s clean and beautiful. It really makes a huge difference in how I feel when I go outside if the pool looks nice. Now we need to get some more string for the weed eater, it’s just too hard to go out and pull the weeds anymore. Every once in a while I do still try though. If nothing else, I get a little bit more tan, and I could use the color right now. This is the size coffee cup I need this morning.
I was watching the local news yesterday morning and I saw a story about a woman who told all her friends and family that she had breast cancer and needed a double mastectomy and didn’t have insurance so she needed to pay cash for it. They had fund-raisers just for her and raised thousands of dollars. She didn’t have breast cancer at all, she just wanted a boob job. From what I heard on the news she ended up getting this boob job done before anyone found out that she was making it all up to get their money . The judge gave her a year in jail as punishment, and this woman said to the judge that she planned on paying all the money back a little bit at a time when she gets out of jail. I think they should have taken the boobs back too. I can’t believe that someone would say that they have cancer when they don’t have it and never did. I still have people who think that because I don’t “look” that sick that my cancer is all better. I just can’t wrap my head around someone doing anything this terrible, and I don’t think her punishment was even close to being enough. Maybe two or three years in jail would have sat better with me. I’m sure that my own money problems don’t help with my opinion of her either. Our pool is looking perfect again, and just being able to see that everything is working again made me feel much better. I do still have to do a little bit of juggling do find a way to pay for everything else, but I’ll figure it out somehow. Rick is terrible with money so he’s agreed to put all of his money straight into my account and let me take care of the bills for a while. He always pays things backwards. I like to pay the largest bills first and the smallest ones last, he doesn’t do that and it makes me crazy when the most important things have to wait to be paid. That’s never a good idea. I have always taken care of the household bills before and we always had what we needed. I made sure that he always had a few bucks in his pocket and we were able to pay all the bills and still have some money left over to have friends over for parties, and that was with less money than we have coming in now. I’m trying to teach him how to stay within a budget, but he tries to spend small amounts that he thinks that I won’t notice then he’s shocked when I get angry that I don’t have all the money that I need to pay the bills when they’re due. I don’t understand why I get so upset about things like this when I never did before. I guess I can see a much larger picture now and I have way more things on my mind than paying the bills. I would love to be able to teach Rick how to manage everything, but it’s just easier right now if I do it myself. I just hope that I’m able to actually get to the bank when I need to. That was why I started letting Rick take care of everything in the first place. I was too sick to get in the car and go anywhere. I still never know what days I’ll be well enough to get up and do anything but I’ll have to at least give it a shot. In Rick’s defense…he has been buying lottery tickets so that we can one day win the lottery. He really believes that we’re going to be rich one day. If we do get rich I’ll be found back in Hawaii, on the beach with a drink in my hand. For now, my coffee will have to do.
I haven’t written any posts for a few days because I didn’t have anything nice to say. I woke up this morning and was in such a shitty mood that poor Rick got dressed and left to run to the store, but not until after I completely unloaded on him for every little thing I could think of to yell at him about. I did apologize to him when he came back and we had a long talk about how I’ve been feeling like everything is just piling up and I can’t see any light at the end of the tunnel. Every time I try to fix anything something else goes wrong. If it were small things it wouldn’t be so bad, but the things that are wrecking me are big things. I’m worried about fixing the house and although we did manage to get the pool fixed it cost way more than we were prepared for so we still have to pay a few hundred more on that, the car needs an eight hundred-dollar repair before the tags are up in December, we have to pay for all of Rick’s heart pills because the insurance company dropped him and we still don’t know what’s going to happen with his neck surgery. Now for the icing on the cake…My cancer is starting to really take a huge tole on me. I can be fine one minute and then the next minute I feel like I’m just going to drop. There isn’t anything that makes me feel better anymore, and the emotional breakdowns are getting worse than they’ve ever been. I keep trying to plan to do things with my friends and family and then when it’s time to go I can’t even get up enough energy up to go anywhere. The past few days I haven’t even been able to get into our office to write a post, not that I had anything much to say anyway. I know that when I started this blog I said that it was going to be not only the good things, but also the bad things, so although I hate to tell the world my problems that’s exactly what I plan on doing. I want to write about all of my life not just the good parts and anyone who doesn’t like it can bite me! Cancer isn’t pretty and you can’t always have some chicken soup and make it all better. I wish that I knew how to at least try to have a better attitude but the only thing I can think to do right now is to take a sleeping pill and go to bed, hopefully I’ll wake up feeling much better than I did this morning. I just feel like the world is caving in on me and there’s nothing I can do to stop it. I did find out that the bone scan that I had last week didn’t find any cancer in my bones, so that’s good news. I just want to feel normal again. There are probably a few more things bothering me that I’m not even thinking about right now, all I can do now is try to get myself in a better state of mind. I just don’t know how to get there.
I still haven’t heard anything from my Dr about the bone scan, but I’m not too worried about it anyway. I gave up and called a reputable poor repair company to come out and take a look at my cracked pool filter pipes after the first guy that came out to look at the problem only put globs of silicon around the leaky pipe and somehow actually made it worse than it was to begin with. Now I have to replace the whole set of pipes because somehow the first guy made it so much worse that the second guy couldn’t get the one pipe off of the filter without risking breaking the whole filter. It went from a small repair to now being a huge repair. Now because it’s going to cost so much to fix the pool, I’ll have to wait and do the inside dining room repairs a little bit at a time. I think Rick and I are just going to do the painting on our own. We did do the painting the first time, but that was before Rick was hurt at work and I was diagnosed with breast cancer, so I’m not sure how long I’ll be able to work at a time. The only thing that we can’t do on our own is replacing the part of the ceiling and the texture. Rick can’t lift his arms over his head because of his neck injury and I don’t think I could climb a ladder, let alone attach the drywall and texture up there. It bothers be very much that we have to pay people to do things that we would have at been able to at least try to do on our own before we both ended up with all these medical problems. I think that what’s worse than all the pain we both have to go through is all the money problems that we have to deal with now because we don’t have our normal income anymore. Not that we were rich before, but we always had enough to pay the bills and do whatever repairs we had. I had thought that the insurance company was going to pay for the damage to the house but with the deductible being so high, it didn’t help at all. I know that I should be trying to find the good in all of this but I wouldn’t even know where to start. I have an appointment this morning with my pain doctor so I have to go upstairs and take a shower. With any luck, I’ll magically turn into a better person and find lots of things to be thankful for. Even as shitty as things are going right now…I know that things could be worse. I don’t need to win the lottery or anything like that, I just want to be able to take care of my responsibilities without having to put Rick out on a corner. (No, I wouldn’t do that…but it couldn’t hurt to try, right?))