Tag Archive | Hawaii

#138 My Writing, and Erma Bombeck


I’ve been told by someone who reads every one of my posts that I’ve been running all of my sentences together, and she’s right… I have. But I didn’t realize that I was doing that until she said something, so I wanted to make sure that she knew that I appreciate the constructive criticism. I’ll try to explain why I do that, as well as trying to learn how to write better posts in the future.

 

When I was a freshmen in high school I remember going the first day to a new school, I was picked on so badly that in-between classes I finally just walked off campus and never did go back. I was taken to juvie where I lived for most of the next year because I kept running away every time they tried to send me home. I wasn’t abused in any way and I had a great family. The problem was all mine. I don’t really know why I kept getting in trouble, but I did. The next year I started getting sick and was taken from juvie to a county hospital where I was told that I had bone cancer in my right knee. They also said that I was going to die, and they had nothing to give me to make me any better. They called my parents and told them the same thing over the phone.

Luckily, my mother isn’t one to just sit by when things go wrong. She’s more like me when it comes to my kids needing my help. Maybe I should say I’m more like her. She took me to a children’s hospital and a year and a half, four chemo drugs and one leg amputation later I was doing much better. My mother did make the school send me a tutor a few days a week, but it was so easy for me to make her feel bad for trying to get me to do any work that I managed to wiggle out of any kind of education. All I had to do was tell her that my leg was hurting and she would get up and leave, but she did always leave me homework to do if I was felling up to it. I’m not proud of what I did. I know I should have listened to her, and if I could go back and do it over again I would do so many things differently. I screwed myself out of any real education…and I didn’t even realize that I was doing it.

 

What’s ironic is that even back then I wrote all the time. I wrote short stories and poems and loved reading them to my dad. I remember reading a story that Erma Bombeck had written, and I decided to write one of my own that was definitely in her writing style. I think I still do that sometimes without noticing that I’m doing it. I haven’t read anything of her’s in more than twenty-five years I think. My father was sure that the style matched Erma Bombeck, and that I must have copied it from something that she had written. I had to go get the story that I had read, and give it to him, explained what I did and that it was my work. I was only looking for a writing style that I could use. I had no interest in taking credit for someone else’s work. He finally agreed that I hadn’t done anything wrong, and told me to keep writing whatever made me happy. And I did.

 

During the time when I was just barely finished with chemo my parents started taking me on trips. The Make-A-Wish foundation let me take my whole family to Hawaii for ten days on two different islands, we went to Disney Land in California, and I was sent to camp with the other ‘cancer kids’ at some point in-between. I had gone to Camp Rainbow the previous year, so when it came time to go again I was asked to be a Jr councilor. I think I was about sixteen years old at that time. I wasn’t told that we would have a guest there doing research for a book until we were unpacking our things in our cabins. We were asked to be very open and honest with this person and if we were uncomfortable with any of the questions we were asked we didn’t have to answer them. Most of us spoke very openly and honestly. You’ll never believe who our guest was…or maybe you will.

 

 

 

I Want to Grow Hair, I Want to Grow Up, I Want to Go to Boise (Children Surviving Cancer): Written by, my now friend, Erma Bombeck. I remember seeing her sitting outside the dining hall looking lost. They had us do things at camp like line up by group and sit at assigned tables, and we had to sing about Johnny Appleseed before every meal. So, I can see how an adult who had never been there would be confused as to where to go for lunch. She did talk to us as a group that afternoon in the lunch room and explained that she wanted to write a book about us. About how we get through everything having to do with being a kid with cancer…she wanted to see how we were able to keep smiling. She met with some of us, me included, in private. She didn’t ask a bunch of ridiculous questions, she just wanted to talk. She wanted to know everything each one of us had to say. What she found out was that most of us were sarcastic and loved to screw with people. Things like pretending to get hurt or telling stupid jokes…nothing funny was out of the question to us, and she picked up on that pretty quickly. She couldn’t believe that almost all of us had a sense of humor about being sick. Even the ones who knew they would die from whatever kind of cancer they had. My name appears on the first few pages along with all the other kids who were there that year. If I remember correctly, she also wrote about when I was asked at lunch if I wanted a leg or a breast when we were being served chicken…I was laughing so hard I don’t think I ever answered that question. I had no clue then that someday I would want both.

 

So, I still love to write about things in my life, but I never did get any real education having to do with writing because of my own issues. I so wish that I had continued my education. I was very upset when I found out that Erma had died in the 90s… 1996 I think. She was a great lady, and a wonderful writer. I don’t claim to have her talent for writing, only that she helped me find a way to write that made sense to me. Now, if I can only figure out where all the punctuation goes, I’ll be happy.

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#86 Another Hospice?


Everyone already knows what happened the last time that I let a hospice team take over my care, but now my doctor says that I’ll need to be on hospice to get some of the things that I need that my insurance won’t pay for, so I’ll give it another shot. I’ve already told these new people that I’m not going to give them control over how I live because this is my life not theirs. I made it very clear that I won’t allow any doctor or nurse to talk me into taking any medication that is going to make me tired or sleep more than I do now. The whole point of me getting hospice to begin with was so that I could feel better not worse. I think I have a long time left on this planet and I don’t want to miss any of it just because someone else wants me to take whatever they think would help me when I already know what works for my body. I have found myself explaining to people again that going into hospice care does not mean that I’ll be dropping dead any time soon. They do whatever they can to help those who can get better find their way to get some normalcy back in their life. No, I haven’t given up and no I don’t have a death wish. They are supposed to help me get whatever I need to be healthy and happy for as long as possible. From what I’m told people who go into hospice earlier in their disease do better and live longer than people who wait until their nearing the end of life. Let me say this one more time. I will not be dying anytime soon. I have a lot more time left but I do need help with some things that are only covered by hospice and not the regular insurance. I’ve been told that I tend to say things I have cancer or, I have lung disease with the same amount of emotion with which I say I’m hungry, or I want to re-pot my new plants.  So what? I don’t feel the need to be a crying mess all the time and I can’t just ignore the fact that I’m sick, so how would anyone in my place talk about these shitty life circumstances of mine. I think that I’m doing very well. I do cry sometimes in the morning when I check in on some of my new bc friends and find out that one of them isn’t well or is gone. That really hits home for me, but I’m nowhere near being that bad off myself. I keep telling everyone that just because I’m as advanced as I am does not mean that I have given up on having a good life. I do wish that my life included going back to Hawaii with Rick for a little time off from reality but I think that I’m doing quite well these days, all things considered.  I do have some new plants to re-pot and I have everything that I need to do that. I usually do my potting outside though and the weather isn’t doing my lungs any favors. It’s so humid here these last few days that I can only go outside for a few minutes at a time before I’m soaked in sweat and have to turn around and go right back inside. Rick and Jesse tried to get me to go swimming with them yesterday but I think I’ll wait for the weather to get back to normal so I can breathe long enough to swim. I’m meeting my new nurse today and hopefully I can make it more than clear to her what things I’m willing or not willing to do as far as my meds. I think I do very well with what I take now because I’m still able to function after taking them. I decided to sign up for a program that will pay someone to come and help me to keep up on my house work, and since I have Diane who does that for a living I’m going to try to get them to just pay her to come and help me out. She already knows my house and me well enough that I wouldn’t need to tell her what needs to be done and we’ve been best friends for over twenty-five years so I’m comfortable with having her here. It would definitely  give us more time to hang out together and when she’s here I’m more motivated to do more things on my own as well. I figure it’s a win-win situation for both of us. Rick has been trying to help out with the housework but I still want to be able to do more of it myself. I started singing again and that always makes me feel better but I can’t hold a note as long as I used to be able to, so I’m going to see if a little practice might help me with my breathing. Rick has also been buying more of the foods that are on our diet so now all I have to do is find some kind of exercise to do and I can get this weight back off of me. I was feeling so good about being thin and then I went and ruined it with M&Ms. I’m totally paying for that few months of going to town on bag after bag of M&Ms but I’ve been craving chocolate and sugar really badly. I just can’t let myself do that anymore. I do still have a single serving bag in the arm of the recliner (in case of an emergency) but I only eat a couple and then put them away. That way I don’t feel those cravings all the time and I get to indulge just a little bit. so is my life good right now? Yes…it’s pretty good.

#85 One of us is going on vacation


I thought more about Hawaii, and although I had a blast with Ray when we visited him there a year and a half ago I’m too afraid that my lungs wouldn’t do well in that humid weather. In other words Rick’s been told by me and Ray that he’s going to Hawaii without me. I’ll be staying home all by myself…well with my animals anyway. I don’t want to have issues with house sitting and pet sitting but mostly I’m just too scared to go anywhere anymore. Yesterday I was having a really difficult time breathing because of the weather here(extreme heat and humidity)  and had to go see my doctor to order more oxygen. He wants me to wear it all the time but I don’t see that happening. It can be a major pain in the ass, not to mention that this unit I have is really heavy and I have to either keep it upstairs or downstairs but I can’t be moving it around. I also had a concern with Rick’s health but the doctor yesterday said that he would be fine to fly so I called Ray and told him that I couldn’t go but that I was OK with Rick going. Ray explained to me that someone would be going in my place, he was just waiting to see if I was going first because his condo isn’t very big.  I was told that their mother would be going in my place.  Ray isn’t even going to be  there for the  whole nine days that he wanted Rick and I to stay but he thought it would be a nice vacation for us and we’d have some time alone in Waikiki before Ray came home from Tennessee in time to have the ceremony to receive his Captain’s Bars. So, Rick only found out that his mother was going in my place after he told Ray that he’d be there. Yes, I’m sending my husband on a nine-day vacation with his mother to Hawaii. Poor Rick…Poor, poor Rick. Don’t feel too bad for him though, he is getting to go to paradise for nine days.  Rick made a remark about being concerned about me going out to do karaoke without him while he’s gone and I had to laugh. “Really? You think that in the condition that I’m in you need to be afraid that some other guy is gonna hit on me while you’re gone?” Get real! Like I told him…I’ll stay home and take care of all the things that I always do and maybe have Diane over to stay with me because she’s been wanting me to teach her how to do the next crochet stitch. She made a whole blanket all be herself with the one stitch I taught her last time. Now I’ll have no choice but to be in a good mood all day.  I didn’t want Ray to not have any of his family there for him…and now he won’t be there alone.

#84 Hawaii? maybe


I thought that while we had a little bit of money this month we should go ahead and install new carpet in the house. Unfortunately, the house is so big that we could only afford to do the downstairs and the steps and upstairs landing. I was told that they would be here at noon yesterday and be finished in a few hours. Nope…the two guys are here again today after being here all day yesterday, they didn’t leave until seven-thirty last night. We were both really tired so we were happy that they didn’t stay any later than they did. They pulled up the carpet on the stairs before they left so I was doing ninja moves to go up to bed walking on my crutches sideways. Rick forgot about the tack strips on the way down when they came back at seven this morning and stepped on one. It wasn’t bad enough to hurt him very much, just enough to make me laugh. I’m already second guessing doing it but when I saw what was under the old carpet I couldn’t believe how bad it was. Before we moved into our house Rick’s drug addict youngest  brother lived here and had a puppy locked in the house so it went to the bathroom in what ever room it was locked in that day, and after trying many times to clean it we just gave up and had to have it removed. I can’t believe how much it costs to buy new carpet. I had them put in a short pile because of my wheelchair. I was afraid that if I had a nice light color and soft carpet that I would just ruin it with my wheels. I have to wait a few more months before I can pay for the bedrooms to be done, but at least the worst of it wast done first. I know that I should be happy that I’m getting it done at all, but I just hate to part with what little money we do have. It seems so hard to come by anymore. I saw them sweep up what seemed to me to be an unusual amount of dust from under the pad, I think that might be why I have such a hard time breathing in the house. Hopefully this will help with that. If so, then it will have been well worth the money we paid. Rick’s other brother Ray is getting his Captain’s Bars next month and wants us to go and be there for the ceremony, he called me yesterday and asked me if we would go but I had to tell him that Rick could go but financially we just couldn’t afford for both of us to go. Everything is so expensive in Hawaii. Maybe if it’s a short trip we could both go. I’ll have to think about it more before I decide. The last time we went to Hawaii we had issues with people watching the house and animals. I had friends fighting over who was doing a better job while I was gone, I know it sounds crazy… but they are crazy so it was kind of expected. I would love to be there for him after all he’s done for us but if only Rick can go then I’m OK with that. I don’t want Ray to be alone for something that he’s so proud of and we’re the only family that could go. I think I’m talking myself into going. You only live once right? I’ll check on tickets today and see what the damage would be for the two of us. Last time it wasn’t that bad but I bought the tickets four moths ahead of time and it was in February. I am afraid of being sick or in a lot of pain and being so far from my doctors. That’s something else I have to ask about. Both of our doctors would have to be OK with us flying. I can’t tell if this pounding in my head is from the carpet installers or a headache coming on so I’m going to lay down for a bit before I look into flight prices. A  vacation does sound really good right now.

#27 Kona coffee


Last year Rick and I went to Hawaii for a visit with his brother Raymond. I wasn’t sure what we should do while we were there so I asked Rick’s brother to help me find things that Rick and I could do that would be fun and Ray thought it would be fun to sign the three of us up for the 5k Great Aloha  Run that is a yearly thing on the island because growing up they went on runs with their dad. Ray has kept on doing walks and runs all the time, he even walks to work every day and because everything is near his house he also walks when he goes out at night…which is most nights. Rick wasn’t in any shape to do a run because he had just had a heart attack a few months before and me being in a wheelchair and being overweight didn’t help either but I thought we should give it an honest try. We planned on being at Ray’s house for ten days and Rick’s birthday was the day before the run so we had been going all over the island for almost a week before we started getting ready for the GAR. The night before we all went out to dinner and loaded up on carbs so we would have more energy to burn but I think what helped me the most was the Kona coffee I had that morning. Ray has a nice little Lanai where we would all get up and sit outside to have a cigarette in the morning while drinking coffee and I remember the smell of the island mixed with the smell of the coffee in the morning…there is nothing better. We made it to the start line at like 4am with thousands of other people, many of them were military people and their families, I was surprised at the number of kids that were doing this run too. Ray has a backpack that is camo print and he hung it on the back of my wheelchair during the run so that none of us had to carry the water bottles, but what I didn’t know until almost half of the way into it was that the people around us thought that I was an injured vet. I guess if I saw a person with one leg in a wheelchair doing a charity run with tons of military people around I might make that same assumption. The whole time I couldn’t figure out why photographers kept jumping in front of me to take my picture. Rick did really great considering his health at the time and we finished in two hours and twenty-three minutes. Ray stayed next to me right up until the last mile then he started running because he said he wasn’t going to let me beat him. I never would have believed that we would have ever been able to finish a run at all and we finished ahead of thousands of other people…go figure. I had a reminder notice sent to me a few days ago about doing the run again this year, I know we won’t be able to go but we’re planning to go back the following year to do the GAR again. For now I’ll have to settle for drinking my Kona coffee and remembering what a blast we all had last year.