Tag Archive | chemo

#148 The Best Friend & My Husband


Being someone’s best friend means a whole lot of responsibility. I have other friends but my #1 top of the list best friend has been proving herself to me in ways that I never dreamed would come into play in our relationship.

When I found out that I did have breast cancer for sure and had started making all the appointments for all the other Dr’s.  I kept trying to call Diane in between all the phone calls…but she never did answer the phone for that whole week. We do live less than a 1/2 mile from each other, and if I didn’t tell her about my diagnosis soon I was going to have a huge melt down. I was trying so hard to keep it together so I didn’t make everyone else lose it while I gave them my awful news. I couldn’t wait anymore so I got into my wheel chair and pushed myself on over to her house a few streets away. She was on the phone when I went into her kitchen to find her and as soon as she hung up with whoever she was talking to she looked at me and said “you have cancer don’t you.”, I shook my head yes and we sat down to drink coffee and talk for a while. She told me that she had purposefully been ignoring my calls because she couldn’t take hearing if for sure.

 

All the time we’ve had to deal with me being sick there was a never-ending flow of friends, family and many gifts, some of paintings, some flowers were sent to me and some people sent me money when I really needed it the most. Let’s not forger the pounds and pounds of M&Ms that I couldn’t help eating…I didn’t want to hurt anyone’s feelings ya know.

Anyway, we have had some people offer to help out around the house or just sit and read with me because my eyes don’t focus very well anymore. But for every ten people who offered to help us out only one or two actually came to help at all. I know people mean well when they offer help but that’s not something that anyone should take lightly. I really did need the help that was offered but we ended up going without or just doing the best we could to keep the house looking at least partially clean. Especially now when I have a 24 hr cough that never goes away. I couldn’t handle getting any more health problems. Here where I live we’ve been getting a lot of dust in the air (even inside through the filters).

 

When my sister Elaine decided to come to visit and stay with me, literally at my side, she did everything she could do to take care of me. She was amazing at remembering when all of my meds were due and she jumped awake every time I had a coughing fit in the middle of the night. Again I’ll never remember everything that she did but I could never thank her enough.

 

When Elaine went back home last month my bff Diane literally moved into my guest room so that she and Rick could take turns taking care of me when I needed someone to help me . Between the two of them I’m well looked after. I  had trouble all along with letting anyone help me take a bath but I’ve been told to only move when I absolutely have to. I broke down and with the help of a shower chair Diane has now seen all the scars from all the missing body parts and procedure scars. She’s been my friend for about 27 years now and I’ve never let her see all old my scars so I thought she might be a little shocked, she wasn’t and I now have baths more often that I could before. That’s not all she does. I won’t give you a list but she and Rich are taking turns with doing everything in the house, except when Jesse’s friend Danny stays over night to listen for my cough (Jesse works nights) and Rick and Diane are running on empty. I wish that I could do more than say thank you to them all the time but I think that I make it very clear how appreciative that Diane left her own family at her house and came here to care for me.

 

For those of you who understand bc lingo, it’s 6x9cm now and counting. My lungs are giving me a problem, but only when I want to breath so I’m working on holding my breath as long as I can at a time. I have to get back into bed now . I can’t believe that writing takes all my energy right out of me. My one and only thing left that I really love to do and it’s slowly fading away…just like everything else it seems. I’m trying to stay in a good mood and since I’ve needed him home all the time I decided that Rick should accept an invitation to go our for crab legs. He loves that kind of food but I never did so he’s probably missed out on a whole lot of having it for dinner. I promised him I would still be alive when he came home and scooted him out the door. He really deserves a night with a friend right now.

 

Advertisements

#147 Thank God my nurse works night shifts


Yesterday I wasn’t doing very well and I was in a terrible amount of pain. Normally I would be able to push the button on my IV pain meds and then I would feel a little bit better. When I push that  button it gives me a whole hours worth of pain meds all at once. I know that I have a nurse coming this morning to set up a new IV bag so I figured I would just wait for her to come and tell her that my pain button wasn’t working for the extra pain meds. I guess it was about 9pm last night when everything on my IV meds quit working at all. The only pain meds that I take are in that bag so I hadn’t been getting pain meds for hours before I knew what was happening and I had to call my nurse late last night to ask her to come to my house right away and fix it. She was yawning when I was telling her on the phone what was happening, but she came right over.

I told her that I was really sorry that I had called her at home after she had worked all day but she made me feel better about calling her. I like my nurse…she understands what the pain can do to people. She ended up having to take the needle out of my port and insert a new needle and luckily the new one flushed perfectly. I was in so much pain by the time that she had it working right again that I actually felt the pain meds go into my body, normally I wouldn’t feel the pain meds at all. I asked her why that would happen and she said that I was moving around too much. I hardly do anything at all and now just taking a bath is a big deal. I don’t know how I can do less that I already do.I think I’ll spend my time watching a movie this morning so I don’t try to clean anything because I know I’ll hurt myself if I do. I do have a box of M&Ms and a pot of fresh coffee to comfort me.

My best friend Daine was here for days doing dishes and cleaning my floors so I think that just watching her do all the work that she did was what hurt me. I did probably do one or two things without realizing I was doing anything at all because she was doing so much. I don’t know how she has put up with me for twenty seven years (I think), but she’s the only reason that my house looks as good as it does. Thank you Daine! I hope you’re coming back soon, but for visiting or watching a movie or something.

 

#142 I’m being forced to take a break…I don’t like it!


I am unwillingly going to take a vacation for a little while, just until I can either get my computer fixed or find a nice cheap used one that will do what I need it to do…which isn’t very much really. Normally, I write a post every morning while I have my coffee and M&Ms, but I think that I’m going to have to take a break for a little while. Not that I want to…because I really don’t. I just don’t have a choice.

Not too long ago, I caught the cord of my head-set on the front of my wheelchair,  I didn’t realize that I was tangled up in it before I started to back away from my desk and saw that my computer tower was slowly tipping over. It literally looked like is was falling in slow motion so I didn’t panic and try to catch it, I thought that if I did that I might do more harm than good. So, I held the cord to the head-set and tried to let the tower down as slowly as possible. Even when the tower made its way all the way to the floor it didn’t make much of a sound at all, and nothing looked damaged at all…not even the head-set cord had anything wrong with it. I went to refill my coffee, which was what I was trying to do to begin with, and I came back to write my morning post.

Everything was going along as usual until I realized that I was hearing a very loud beep coming from the computer tower. I had no clue wait is was, and after writing a few more lines I decided that I might have shaken something lose in the tower and that I should just save my blog post for later and re-start the computer. I shut it down and tried to restart it…but something went very wrong. I must have done something really bad for it to not even be able to start Windows. I begged my husband, although he didn’t want to do this at all, to open the tower and just look to see if there was anything obvious…like a loose wire, or something unplugged that he could just fix and I could get back to my writing. Nothing found, and he gave up.

My little brother knows pretty much everything about computers, but he has a very demanding job as well as a family with two little kids, so you can see why I wouldn’t want to ask him to check out my problem. I didn’t want him to feel obligated and possibly miss out on anything important. Rick did ask Jason if he could take a look at it, and I was given very bad news about my little computer friend. When it tipped over, the hard drive was running…now I can’t fix it. It’s going to have to have a new hard drive installed, or I’ll have to find a very cheap pc . I love my computer. It isn’t anything expensive or difficult to use, it’s an e-machine. I don’t ever do anything but write my blog posts, check my fb, and talk to some other women with breast cancer online. I have no need for anything fancy, actually I think a fancy computer would simply be wasted on me. I just need to find a way to fix my sad little broken pc. I’ll look around and price some hard drives, hopefully because of the holidays they will be on sale somewhere.

So, I’ve been using Rick’s gaming pc every morning, I usually wake up three or four hours before he does, so that I don’t get in his way. No problem there. Jesse has been needing to use Rick’s pc too lately to look for a job (she didn’t like the ones she had, too much drama)but she stays up late at night and now Rick has things on his computer that he doesn’t want there (no, it’s not porn or anything vulgar). I told him if he didn’t want anyone on his pc when he isn’t awake then he should change the password.

He changed the password right before he went to bed (the night before last), and when he woke up he had no clue what he had changed it to. We’ve tried everything to reset the password, the computer, and even called the manufacture. They said that all they can do is send him a disk in the mail that should help him fix the problem. I don’t think I’ll ever agree to use his computer again. Somehow, even though I was asleep when he changed the password, it’s still all my fault. And everyone else’s fault too. He’s very, very touchy about his gaming pc because he waited years to be able to have one. I totally get why he’s so upset about all of this right now. But I did find out that he now remembers changing the password to one that I could easily remember…but he never told me what it was? Hmmm

I’ll be back as soon as I can,

All my Love to everyone, cin

#141 Canceling Christmas? I hope not


 

I never have been one to make a big deal about Christmas…but Rick waits all year for it so I try to go along with whatever he wants to do. We did get some very exciting news yesterday that is going to make the holidays much happier for my family. We didn’t win the lottery or anything like that, but we did find out that our lives are about to start getting back to normal if all goes well from here on out. After Rick was hit by a car while unloading his truck at work we had to get a lot of lawyers involved. Three different firms have been helping with getting him the compensation that he deserves, as well as all the medical treatments that he’s had to have for the past few years. A few days ago we found out that worker’s comp wanted him to go back to work and they also agreed that he has a permanent partial disability that will limit what kind of work he’ll be able to do for the rest of his life. I know that I mentioned in an earlier post that Rick thought he might like to go back to working in management of a telemarketing company, and he also wants to work some place where he can put to good use all the experience that he has from being in a truck. Now he’s able to start actually going on interviews. Yesterday his own Dr agreed that Rick is able to start working again, as long as he starts off only working part-time with limitations. We were told that for the first six months he’ll have to also go to physical therapy and have massage therapy to help with the pain of getting used to a work setting. What was funny was that both when the nurse walked in, and then also when the Dr came in, they both came straight to me, took my hand, and asked how I was doing. Rick finally said something after the Dr did it too. Sorry babe, but I’m just more important. jk 😉

 

We really thought that this was going to be a very sad Christmas because we simply won’t have any way to go and get any gifts for our kids…let alone all the rest of the family and friends that we would normally get a gift for. It’s not that we ever were rich, far from it, but we always managed to find a way to give a little something to everyone. The year before last my mother and I spent two weeks straight baking every kind of cookie we could think of for the family, and everyone else we could think of also received a nice dish of assorted goodies. Chocolate dipped pretzels were the easiest to make so I loved doing those. Mom likes to make candy so we also had a few hundred home-made peanut butter cups…a lot of those ended up at my house because they’re Rick’s favorite. But, last year we didn’t have enough money to buy all the ingredients to make as much as the year before, not to mention that I spent most of November and December in the hospital having surgeries, so I couldn’t help mom bake. I was released from the hospital after my mastectomy late on Christmas day. I missed all the good stuff. Rick did bring me a tiny little Christmas tree in the hospital with a few of my gifts from the family to put under the tree, so I know that I wasn’t forgotten…but it’s never the same as being home with the family. The nurses wanted to know if he had a single brother.

 

I doubt that I’ll be able to do much, if any, shopping this year, but I do have the knowledge that everything can and will start getting back to normal. I don’t have a clue how long we’ll have to wait for the lawyers to finish with all the final details, it usually takes another six months to find out what the end result will be. But in the mean time, Rick can get back to having somewhat of a normal life again. I love having the house to myself when he’s working, and I know that working makes him feel so much better about himself. None of this was in any way his fault, and I feel bad for him that he’s had to go through any of it. So this year Christmas, although it won’t be back to normal just yet, will be a time when we can at least be happy about life again. All the endless medical crap with both of us has definitely taken a huge toll on all of us, but now we have something to look forward to again. It’s been a long time since I could think about anything in the future and he happy about it. This year we have a Grand Daughter coming, Rick will be working again, and hopefully in a few months we can start slowly paying back all the family that’s been helping us, and if we play our cards right we might even be able to find a few small gifts for under the Christmas tree. This is the one that Rick wants to put up this year. He thinks that he can cut a branch of of out front patio tree and put his favorite little blue ball on it too. For the past twenty five years Rick has managed to hide a blue ball somewhere on the tree, no matter what colors I use for the rest of the decorations. He says it’s ‘special” to him. I think it’s funny.

 

Justin and Ashley made it to NC, where Rick’s little sister lives, and they’ll be staying there with her for a little while so that they can find new jobs and save enough money to get their own place after the baby comes. I do wish they had moved back to Arizona, but I know that they will be in good hands with Rachael. She always has done her best to help out all of her nieces and nephews when she could. She takes after her father in that way and many others. He was a great man. Rick is hoping that we’ll be able to go and see our Grand Daughter when she’s born, but I don’t know if we’ll be able to just yet. Like I said, it could be a very long time before we see a penny from him being hurt. But at least we know that this whole bull shit legal thing will be over soon. I just hope that I’m feeling well enough to travel that far. I walked a long way yesterday on my crutches to Rick’s Dr and now I’m paying for it this morning….but it was a well wort it trip.

#140 I’m healed? Ah…NO!


So, yesterday afternoon I was out side on the patio talking to Rick about his appointment Thursday with the lawyers, and I asked him what the date was. I never do know what day of the week it is and most of the time I can’t remember what day of the month it is either. He told me the date and I suddenly remembered that I had something to do. I looked in my purse for any appointment cards and found on from my pain center with a time of 1:45 yesterday afternoon. I called my mom and asked her to take me, because my car needs to have repairs done, which I can’t afford right now, and she made sure that I was there on time. Thank God for mom. I waited longer than usual in the exam room for the PA to come in, but I didn’t mind because he always spends a lot of time talking to me so I just figured that he was talking to someone else(I could hear him in the next room) and he would be in as soon as he could. When he came in he sat next to me and said “How are you doing?” I said “shitty,how about you?” He said the same thing, “shitty”. He wanted to know why I wasn’t doing well and I told him about how I thought that I was starting to have problems in my arm. I did have a lot of lymph nodes taken out when I had my breast amputated (I think the word mastectomy doesn’t do it justice), twenty-eight the last time and eight the first time. Even one being taken out can cause you to have a lot of pain and swelling in your arm. I haven’t had any trouble with it in this past year so I’m not convinced that it isn’t the tumor in my arm pit pushing on things that are causing pain all the way into my hand.

 

I watched for any swelling or anything like this before, but I never saw anything.  And, I’ve usually been able to get relief from the pain pills after I healed from each surgery. I’m a little worried that this is only the beginning of the problems with my arm.  Anyway, the PA wanted to change my meds(which he does every so often) and scribbled for a while on some paper, trying to figure out the correct amount of the other pain meds to equal what I was already on. I would have needed a calculator for all those math problems. After a while he gave up and went to go to the back office to speak to my Dr and ask him what he thought should be written. When the PA came back he was laughing. I asked him what was going on and he,still laughing, said that some Dr had called my Dr and told him that I didn’t have breast cancer…that he thought that it was a misdiagnosis. I wish I was a fly on the wall for that conversation.

 

When I was first diagnosed and still had all the tumors in my body I had to be admitted to the hospital for pain. I insisted after almost a week that they call in my own pain Dr because he already knew me and I trusted him. They refused until I started screaming in pain, and I also sent my husband across the street to the Dr’s office to tell him personally that I needed him and why. My own Dr showed up in my hospital room at about eight pm when he was on his way home for the night. When he came in he sat down held my hand and put his head in my lap and cried. He told me that no matter what happens he’ll be there to see me through this. I believed him then and I still believe in him now. He chewed out the hospital staff and changed the meds I was on and I was able to go home two days later. If he hadn’t come in to help me I don’t know how long I would have been there. I don’t have a clue what Dr would have called him unless it was the Medical Director at the hospice that I was in a few months ago who wanted me to have more scans and tests to prove what my prognosis was after I had my surgery. They do have to make sure that you qualify to be in hospice so I know why they wanted more proof. But, if they would have told me at the time what they were looking for I could have had the reports from the Cardio Thoracic surgeon and the pathology reports sent to them. I didn’t know then that they didn’t have everything.

 

I haven’t seen an Oncologist for about eight months now because I didn’t have any reason to go to one. I wasn’t having chemo and I didn’t know that I would need to be continually getting tested for something that doesn’t go away on its own. I made all of my choices clear to all my Dr.s and I figured that they would all talk to each other when they needed information. Anyway, my own Dr knew better than to believe that it was all a mistake and thought that the one who had called him and told him that it was all a misunderstanding was an idiot. I’m very glad now that I insisted on having my own Dr come to the hospital because he saw for himself that there was no mistake and that I simply wasn’t going along with all the usual treatments for IDC. Some people (including Dr.s) think if I’m not doing chemo and radiation that I must not have cancer. It only it were. I did ask my PCP to get me a referral for another Oncologist so that there wouldn’t be anymore questions about my prognosis. Just incase I need proof from now on. So now I start the new meds next week, I know that I’ve taken them before but I don’t remember if I had any problems with taking them. Hopefully it’ll help me without giving me any more issues to deal with.

#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.

#129 More surgery..I’m Ok with that


I met with my new surgeon this morning about possibly removing this tumor in my lymph nodes and he thinks that he can get it out without causing anymore problems for me. My main concern has been that if I let it get too much bigger then I might not be able to walk on my crutches because of the pain it would cause. I already do have pain from it in my arm and shoulder so I don’t want that to get any worse. I was under the impression that removing this tumor would also help me to not have more cancer spread right away however the surgeon just told me that removing it would not in any way help with my breast cancer, it would only help with the pain. He said that he would go in and look around to make sure that he wasn’t causing more damage than I already have before actually trying to remove it, and if he thinks that there are too many blood vessels attached to it or if it’s attached to my rib cage he won’t try to take it out at all. He did agree with me that I should be put under general anesthesia and then admitted to the hospital over night to make sure that I was doing OK before he sends me home to recover. I told him that I had woken up after surgeries many times screaming in pain so I wasn’t comfortable being sent right home before I knew I was doing OK with the pain. He seemed to be a very responsible surgeon and wasn’t in a hurry to cut me open unless I was sure that I wanted it knowing everything that could happen. I think that as long as he only takes out this one area and doesn’t try to take out anymore lymph nodes then I won’t have any further problems with my arm unless I have more growth there later on. It won’t be a cure by any means but it should help me with the pain in my arm and help me continue to be able to walk on my crutches for a while. He did seem surprised that I’m not having chemo or rads but after I explained everything he seemed to get where I was coming from. He has me on his surgical schedule at the beginning of November so that I have time to see my pain Dr before I have the excision done. I want to make sure that I cover all my bases before jumping into having another surgery. I think by my conversation with him that I’m doing the right thing and that he’ll be very careful not to do any harm. I feel fine today, just tired as usual but I want to try to get some cleaning done while I’m feeling up to it. There’s a very nice breeze outside so Rick opened up the house as soon as we came home from seeing the Dr. It feels good to have answers to my questions, even if I don’t like all the answers at least I not just sitting here wondering about things. Today I’m grateful to Rick for always going with me to see Dr.s and for being fine with whatever I want to do every day…mostly depending on how I feel-today I feel like cleaning. I plan on trying to get some of Jesse’s laundry done and mopping my kitchen floor, hopefully my body will hold out until I get finished with all the chores I wanna do. I think that I would like to have some music on while I work…I definatly need more coffee, apparently one pot this morning just wasn’t enough. This is my grand baby that’s coming soon, I can’t wait to find out if it’s a boy or a girl so we can start getting all the basic necessities that Justin and Ashley are going to need. Not to mention all the frivolous crap that Rick and I just want to get for them. I’m already feeling very giddy about having my first grand baby, and I caught Rick laughing at a baby in the waiting room this morning. He tried to say that he wasn’t in a hurry at all for Ash and Justin to have a child but he finally gave up that argument and admitted that he was anxious for it to be born too.

Photo: Our lil one! :)