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?
Apparently I’m now a clutz. Yesterday when I was writing my morning post I went to put my headset on my desk and turn around to go outside, but somehow I caught a cord on the front of my wheelchair and pulled on my computer tower hard enough to tip it over. One computer down! I run into things with my chair all the time but I don’t usually cause any damage. My hard drive somehow isn’t hooked up anymore so it won’t initiate windows at all. Now I’m having to use Rick’s computer. I don’t like using it because he bought it last year specifically for his games so I’ve never used it at all. I didn’t even know what the password was so of course he gave me shit about asking for it. He thought he was being funny but I had just written the entire post and didn’t know if it was lost or not. Luckily WordPress saves all material every twenty seconds so it was all there when I logged back on. I don’t know what I would do without my blog. It’s become my way of getting through all the crap that’s happening with my sanity still in tact. I do feel much better today, and Rick made sure that all the housework was taken care of while I was out of commission these past few days. The insurance adjuster did come by on friday and he told us that we have to have our entire dining room and livingroom ceiling scraped and re-texture. We also need to replace the drywall in the dining room and have the roof resealed. When I went to bed last night it was just starting to rain and I woke up to the rain still coming down. It wasn’t pouring or anything, just raining enough that I’m worried to check and see if there is any more damage. Rick complained to the adjuster about the water dripping on our brand new carpet so he agreed to pay to have the carpet cleaned too. That will come in handy after the huge mess is made to scrape the ceiling. I do want to get the repairs done, but I’m not looking forward to the mess. The carpet company has been trying to get me to make another appointment for them to come out replace the carpet that I threw a fit about, it was installed terribly on part of my steps. I’m going to call them this morning and tell them they can’t come until after the repairs though. I do have a few other things to do today so I think today is gonna be OK. I feel all right except for the cough that I’ve had for what seems like forever. Yesterday I went up and down the stairs so many times that I managed to pull a muscle in my shoulder but it isn’t too bad this morning. I have a feeling that I won’t see Rick for a few hours yet, he stayed up until one in the morning to be able to pick Jess up from her second job after working twenty-three hours straight. Oh, to be young again. I really don’t know how she’s managing to work all the hours she’s working. I think she did get a nap on my couch for about forty-five minutes before she worked all day and then all night. She wanted us to buy her a few red bulls to help her stay awake and although I hate energy drinks(because I think they’re dangerous), Rick went to the store and bought her one. I hope it helped. I haven’t seen her this morning. I guess Rick took her to her apartment. She hardly ever goes home so she’s letting one of her friends stay at her place to take care of her kitten and he cleans her house for her. Jess says it’s like having an old man housewife(I think he’s twenty-five). I’m just happy that she found someone to stay there to help out. I didn’t like her leaving the kitten home alone so much. I was surprised that her second job was in a group home for disabled people. I guess when they wanted to know if she had any experience with taking care of disabled people she told them that she has twenty years of experience living with me. She’s very good about knowing when to ask if she can help with something, and when to let someone do things on their own. I’ve purposely taught my kids how to run a house from the time they could reach things, just incase I couldn’t do things for them they were able to do everything on their own. Now if I can get them to keep their rooms clean when they’re here…that would be nice.
Yesterday I was having the worst day in a very long time. I couldn’t get away from the pain long enough to become anything close to a normal happy person. I was going through my house pissed off at the world and everybody in it, I thought that if I did some chores that I would feel better, although I knew that I shouldn’t because I was already hurting so much. I made it through doing most of my dishes, doing four or five loads of my daughter’s laundry (she doesn’t even live here) and sweeping my kitchen and family room when I decided that I had to take a break. I wanted to try to sing a few songs while I caught my breath, and because I had to exchange my karaoke machine a few months ago and never really had the new one set up properly it had to be moved and rewired so that took a few hours to do when it should have only taken a few minutes…then when it was hooked up I couldn’t find my mics because there were extra wires everywhere. I was so pissed off at that point that I took a garbage bag and threw into it all the wires to other people’s random things that had no business being there, and just as I threw the garbage bag into my garage someone rang the door-bell. Of course Bob (our Pomeranian) goes crazy which pisses off Rick who had been getting bitched at all day by me, and when Bob jumped up to run at the door he scratched my leg trying to get by me. I thought that I was going to find the carpet repair guy at the door, he was supposed to come and replace some of the new carpet that was installed improperly, which is by the way very loud, the glue smells to high heaven and they make a huge mess. This day couldn’t have gotten much worse! Rick and I both went to the door so that one of us could hold the dog while the other let the carpet guys in…but nobody was there. I could see the UPS truck leaving and there was a huge box left on my front patio with my name on it. Rick brought me the box and I put Bob back down and I took this great big box into the kitchen. I must have had a huge smile on my face because for the first time all day Rick smiled at me and went back to his computer. It had a beautiful card on the box addressed to me, with a little writing that just basically said that someone was thinking of me and wishing me a pain-free happy day. In the box was the most perfect bunch of sun flowers along with a little tin can vase that looked like a little old milk can. Just beautiful. I instantly was happy again and hurried to get my pretty flowers cut and fed and put into fresh water in their new home. They were really hot so I was a bit worried that they would die yesterday but they didn’t. I carried them from room to room with me for the rest of the day yesterday just so that I could see them where ever I went. I didn’t do anything else around the house after that, I just rested and looked at my perfect gift. I think what made me so happy wasn’t just getting such a great gift, but it was the fact that those much-needed words came from a woman whom I’ve never even met. She is someone who I’ve been talking to on the internet who has also lived this nightmare. I’ve never even spoken to her on the phone. This woman has encouraged me on good days and cried with me on terrible days and I don’t even know her last name. The only way that I could thank her was to send her a pm on my computer. So this is why I’m back to giving myself whiplash with the mood swings. I truly believe that if Rick could have found this wonderful woman yesterday he would have hugged her refusing to let go because she fixed me in a split second. I woke up today and came downstairs to make my coffee, when I saw my beautiful sun flowers on my kitchen table and I smiled. I think it’s gonna be a great day.
I thought this past year would never end. All the doctors and scans and blood tests, and the endless amount of strangers to whom I had to give every bit of my personal information. I really thought it would go on forever, but now I have some time where I don’t have to do anything but what I feel like doing. I can just try to get things back to normal…normal for me anyway. I’m not miraculously cured but I do have a while where I shouldn’t feel too terrible. The fatigue is really the most difficult thing to deal with. I like to plan things out and I like to make lists of what I want to get done. I do tend to make long lists of chores, and in that case it does take me a few days to finish everything. Thank God for Rick! He knows what things are most important to me and if he sees that I’m not able to do a chore he jumps in and does it himself. He never complains about making dinner (which is usually his job), and he doesn’t say a word if he has to do laundry or take care of my plants. He’ll tell me what he’s done and after I thank him for picking up my slack he never mentions it again. He’s just good like that. He goes to the store when I’m not paying attention and comes back with my favorite treats so that he can try to make me happy when I feel like crap, yesterday it was apple pie. In a perfect world everyone would have a Rick. I do try to do things for him too but I don’t always have the energy to do very much. I feel guilty for the stress that is put on him because I’m sick, and I know that he doesn’t agree with the treatment, or lack there of, that I’ve chosen. I woke up today and realized that I don’t feel as bad as I’ve felt for the past few days so I’ll be making my list when I’m done writing this post. I only have one tumor now and although it’s not very big it does make me hungry for anything sweet all the time and it takes up most of my energy. I try to remember that no matter how much energy I feel it will only last about an hour before I’m done for the day. I have noticed that I’m drinking more coffee lately but that doesn’t seem to help very much. I’m hoping that I can build up to doing a little bit more each day, although patience has never been a strong point for me. There are so many things that I miss about my life before breast cancer. Mostly I miss just going to work with Rick and working in my yard. I don’t think I realized how much I loved my life before I didn’t have control over it anymore. Rick and Hollywood tried to get me to do karaoke with them the other day and they insisted that I sing, but after one song I didn’t want to do it anymore. I usually don’t pass up an opportunity to sing with other people here, so I think they were a little surprised when I left the room. Music has always made me feel better so I don’t understand why I didn’t want to sing…I just didn’t. I’ll try to do a little bit of something each day and add more a little at a time and see what happens. It definitely can’t hurt to try. I’ve already had two cups (bowls) of coffee and I’ve been eating M&Ms the whole time I’ve been writing so I should have some energy this morning…maybe enough to sing for a while. I can’t believe that I’ve posted one hundred posts on my blog. I had never even read a blog before I started this one. Thank you Elaine for helping me figure it all out. I would have never been able to start it on my own.
I did get to go for my walk the day before yesterday but we had to cut it a bit short, Rick had a hard time going the full two miles because we didn’t go first thing in the morning. By the time I had enough coffee in me to be a person it was about 9am and the sun was already up high enough that we didn’t have any shade to walk in. So, yesterday instead of trying to go walking again Rick talked me into going swimming after he vacuumed the pool and I’m so glad that he did. The water was warm but not too much and we swam around for a long time to make sure that we both exercised enough to make up for not going for a walk. I think that until it cools off considerably we’ll just be going swimming in the morning. I was so happy to know that I could actually get outside and go around the neighborhood because that was the first time in a long time since I’ve had the energy to go anywhere without the car. In fact I was so excited that when we got home I went straight into my garage and cleaned out all of the garbage, but Rick made me go inside and cool off after a few minutes out there. I’ve put on about ten pounds in the past year and all of my favorite clothes don’t fit me anymore so I’m hoping that doing morning exercise again will help me drop the weight. I found out the other day that my son Justin and his girlfriend Ashley are expecting their first baby in February. I don’ like that I’m that old but I’m happy that I’ll have a grandchild. I remember how difficult it was for Rick and I to have children when we were younger so I hope they have an easier time raising a child than we did. Justin is 22 so they’re old enough to be responsible for a baby, but I do wish that they were closer so that I could help them a little bit. When I was on the phone the other day with Justin and were talking about his having a child I told him that I hoped that he had a son and that he was ‘just like him’. He got all upset and started screaming to Ashley that I had just cursed them. He told me ” mom,that’s not funny”…but I thought it was very, very funny. My daughter Jesse has an ex-girlfriend who had just had a baby when they first started dating, and when they broke up Jesse was already attached to the baby so to this day (he’s three now) she takes him a few days a week and he’s always called me grandma Cindy. I don’t know how I ever took care of my kids without losing my mind. I guess that having children is for young people because as I get older I have a hard time being around anyone under 18 without being very agitated. Now I know what to do to teach a child to be well-behaved, but that wasn’t always the case. Luckily my kids grew out of being out of control. It took me a long time to figure it out though. I don’t think that I had a harder time raising them because I only have one leg, I think it was simply that I didn’t know how to raise children to behave the way I wanted them to. Some things just take time and experience. I am glad that I had them when I was younger because now that I’m not able to do as many things they can do things on their own. I hope we can figure something out so that I can be of some kind of assistance with the baby because life is too short to miss out on the good things. I also wish that I could just tell Justin and Ashley what to do to have a well-behaved, well-mannered and well-adjusted child but as we older more experienced parents now know, everyone has to figure that one out on their own and in their own way and their own time. I don’t like to wait for things though so maybe I’ll be able to at least give them a few pointers? Rick replenished my M&M supply yesterday, so me and my tiny shovel are headed out to the front yard this morning to tackle some weeds that popped up in the rocks after it rained the other day. I’m going to go out as soon as the sun comes up so that I can see what I’m doing , hopefully it won’t get too hot before I get them all pulled out. I have to go and buy a new tiny shovel soon because I’ve worn off the handle and I don’t want to get blisters on my hands again like I had the last time I wore out one of my shovels. I need to pick up some new gloves too, mine don’t have much material left at the finger tips and I’m afraid to get a pricker in my finger. I have to be careful about not getting any kind of infection in my right arm that could turn into Lymphadema. That’s a side effect from having my lymph nodes removed during the mastectomy. Luckily I haven’t had any problems with my arm and I want to keep it that way. I have enough to deal with already.
So, the wait is over, and I know now what I knew all along. I do have to admit that just having a more recent scan is going to make it easier for me to just show people the report whenever anyone has a need to know how I’m doing. Actually, it isn’t as bad as I thought it was which means that I’ll have more time to work with than I thought I would. Consider this good news… because I do. It could have been way worse than it is. I probably should call everyone I know and tell them all what I found out, but I’m not too sure that I want to be specific because when I do I get a lot of people who want to ask me a ton of questions on why I don’t do things like they think I should. I understand that there are many misconceptions about aggressive breast cancer, so I do try to give the people I love a little break on the questions. I know that they mean well no matter how hurtful some questions end up being… not to mention I’ve asked a few hurtful and rude questions myself over the years. I see my doctor on Wednesday to see what he thinks I should do because I won’t need hospice if I’m feeling well enough for a while. I was told that can go on and off hospice service as needed, and it only takes one phone call to start-up right away if I get to feeling very sick. On the other hand there are still things that I need that my insurance doesn’t cover. Also, if I have a pain crisis and have the need to take IV pain meds I don’t want to have to go to an emergency room because they always treat me like I’m a drug addict who ran out of her pills(even when I show them that I have all my full pill bottles in my purse). To say that I feel like I’ve been abused my er staff would be the understatement of the century! If I don’t stay on hospice I’ll have to find out very quickly what can be done for me without ever having to go the hospital again. That is definitely what I like about the hospice service the most, they always take such great care of all of me, not just my disease. I think I am going to have to do a bone scan still and I can manage that but if they start asking me about doing another biopsy I think I’m going to lose my mind all over someone. When I came out of the imaging place when I was done being scanned I found Rick waiting for me in the car, he had seen my post on his Facebook page(on his cell phone)about me wanting carrot cake with cream cheese frosting. So, while he was waiting for me he drove to the store and bought me a cake-mix and frosting so that when we came home I could bake it. I made a whole bunch of cup-cakes and have been having them for breakfast yesterday and today. I have eaten a few others during the days but that’s not important. What is important is that I was a good girl so they gave me a snack and juice when I was leaving the imaging place and then Rick spoiled me with cup-cakes. I love that he still tries all the time to make me happy. He did do the vacuuming for me yesterday because I had been saying that I wanted to get that done. I left to go somewhere with my daughter and came back and the floors were mopped and the dishes were running in the dishwasher too…and I didn’t even ask him to do any of it. Other than being really tired and craving sweets, I think I’m doing just fine. If when I wake up tomorrow morning it isn’t raining like it was this morning I want to try going for a walk like we used to do all the time. I know that if I can get myself built back up enough(a little bit at a time) with walking I’ll feel better. I just hope that it gives me more energy and doesn’t back-fire.
I’m new here. I just happened upon this thread. Actually, it seemed to be calling out to me that I needed to read it. So, I did – beginning to now. In fact, that’s all I’ve done all day. I just want to let you know that you have touched my heart. You have made me laugh and made me cry. I thank you for both. You are an incredible human being. You are my hero – an amazing explorer, creating your own path through this roller coaster we have come to know as – life. Your husband is a beautiful man – truly perfect for you in ever way. Your sisters and Mother to seem to be phenomenal human beings as well. In fact, at one point during my reading of all this, I thought, “Wow, I wish I had sisters!” then remembered, oh yeah, I do (one anyway). LOL. I hope you have a wonderful day and a pain-free, energy filled life. I will be praying for you and your family.
I have poured my little heart out on this blog with the intention of keeping my friends and family up to date on my lung disease and (second)cancer, but I’ve found in that process that I’m really doing it for myself as much as to help everyone else understand what’s going on. Every morning I wake up at the crack of dawn, and with my coffee in hand I head straight to my computer to write my morning post. I have so many different moods and every day I feel different, so it’s like someone new is writing this blog every day. I found myself writing down every little thing that bothers me as well as how I’m feeling and some days I’m even happy and pain-free. I never know how each day is going to start or end so It’s usually even a surprise to me as to what’s going on in my life and what I’ll write about. I think my writing has changed because of the comments that I get about it and that is a huge blessing to me as far as keeping a good attitude about having to go through so much. I’ve found support and love from complete strangers here that helps me through some very rough times as well as making my good days better. So today, I write to you. I want you to know that you matter to me, and the fact that you’ve now read all seven thousand of my posts on the BCO site and are working your way through all 90 posts on my blog tells me that I’m doing the right thing by sharing everything that I have. I don’t hold back and I know that I write some very upsetting things sometimes, but for some strange reason I figured that I needed to do it…so I continue. I’m grateful to you and everyone else who takes the precious time out of their day to read about things that mean so much to me and hopefully I’m helping someone else get through some difficult times in their lives as well. I don’t take that for granted and never will. Just taking that time for me is enough to let me know that I still matter. Some days I don’t feel like the world even knows that I’m still here, but when I see all the people who want to know how I am and what I’m doing it puts things back into perspective for me and makes me feel needed again. That’s been something that’s been hard for me to come by ever since I found out about this new cancer. Just having people like you reading and then telling me how I’ve touched your life keeps me going in the right direction. Thank you for reading everything, and thank you for letting me know that I’m not alone and just writing to myself. I really needed to hear someone say what you said so your timing was impeccable. I’ll try to keep it interesting for you, but to be honest, my life is so crazy that I usually don’t have to try very hard. I’m so happy to have touched your life and please know that you’ve now touched mine.