Fantastic news: Cindy is back home, resting comfortably. 🙂 We arrived home to a delicious homemade potatoe and ham soup with onions an pineapple and lots of love that Rick cooked (mmmm mmmm good!!)
Cindy had her evening graham crackers and milk, got comfy in bed then I got to read her a couple chapters in her book with recorded sounds of thunder and rain lulling her to sleep. She says she knows it sounds silly, but me reading to her helps her relax and makes her happy. What a wonderful gift to be able to offer: words of a delightful book read with love … giving a peaceful way to drift into dreamland. Gosh am I lucky! I will cherish these moments and create more memories for us both … and you all, too.
I am gonna get some rest and dance in my dreams to the thunder and rain recording that has created a calm allowing cindy to sleep soundly for several hours!
This morning I woke up and started all of my usual morning things, one of which is checking in on all of my friends on a breast cancer support board, and I found out that I have a friend who is probably at the end of her life. She has been such a great support to me and so many others when she herself was having some very difficult health problems, and I’m having a hard time coming to terms with her being in hospice this morning in a drug induced light coma. She is surrounded by her family and friends as well as a great friend that she found on the board. We were all told that if we left a message for her on the board this morning, they would all be read to her so that she could see all the love and prayers that are being sent out to her from all over the world as she faces this terrible time in her life. My first reaction was to be very upset for not only her but also her wonderful husband and the rest of her family. I didn’t realize, until after I had tears running down my face, that if she dies any time soon she wouldn’t be sick anymore. She loves to bake and is known to send people cookies to make them feel better even as she herself has physical issues to deal with, so it’s no wonder that she has thousands of friends wishing, hoping and praying for her comfort and peace right now. It’s never easy to hear about anyone, especially someone who has touched our hearts, who is having to go through so much when she clearly deserves much better. I have a feeling that today won’t be about me at all. Today for me will be about this lovely woman. I feel very helpless to do or say anything that would help, although I did write a little note to be read to her this morning. All of us have different things that touch our hearts, and hopefully we all learn from the struggles that we see other people go through as well as our own trials. This is a lesson that I wish I didn’t have to learn, and an experience that I don’t wish on anybody. I often think about all the women who have given me support and shown me kindness when I myself thought that my disease was progressing. I’m feeling fine right now physically, however it breaks my heart to know that other people are suffering so much every day, and it’s even harder to deal with when it hits this close to home. It’s so easy to get caught up in our own troubles and forget that we’re not the only ones who have suffering in our lives. I can only do my best today to be a good wife, mother, daughter, sister and friend. For me today won’t be about me at all.
UPDATE; I added some pictures of things that she would have loved …baking was her favorite hobby.
About two hours ago my dear friend Mary took her last breath surrounded by the people that she loved the most. I know that she’s in a better place and her pain is no longer. I am heart-broken for her family and friends, but so happy that she went out on her own terms, she chose to be under palliative sedation so that she didn’t have to go through any extreme pain in the end. I’m told that she drifted off slowly and died in her sleep. I’ll miss our talks and her uplifting spirit. You gave us all a gift by being here to teach us all how to go through this terrible time with such grace, so I thank you Mary. You will forever be remembered by so many for the gift of love that you shared with all. God bless you Mary. I know that you are in Heaven, pain-free, and looking over us all. All my love to you my friend. I will never forget you.
At least I thought that it was funny. When I was put inpatient in the hospice for the first time a month or so ago it was because they wanted me to be watched while they upped my meds more each day for over a week until I could barely stay awake. I was told that it was better for me if I kept a high level of pain meds on board all the time so that I wouldn’t have the pain flair ups that I’ve been having. It wasn’t my idea but I was I went along with it. The funny part is that my insurance company has now sent me a bill for each time that I was admitted because on my addmition sheet my Doctor said that I have Breast Cancer with bone mets and other mets. If not treated the patient will not live longer than six months. The insurance company then said that was not a good enough reason to be admitted inpatient. Of course I’m not planning on being dead in six months but they have to say that to have me be admitted into hospice. Then they just keep admitting you every six months. I guess it’s just a billing game they play. I actually started laughing when I read it. The next day I had another one. I figure I’ll just let them hash it out and I’ll just stay out of it. I’m feeling a little shaky from decreasing my meds but there’s no way I can stay in that condition. I’ll be fine as long as I don’t let anyone talk me into anything stupid again. I have been known to be talked into things pretty easily, but I’m trying not to. Now I have a ton of house work to do now from letting it go for so long. Rick sucks at cleaning. Actually he just ignores it unless I tell him directally that something needs to be done. Now if I lived in a video game things would be different. He does take care of enough though to keep the house standing until I’m feeling better and can take over, but then I try to do everything in one day. It’s a never ending circle. I decided to wear a bathing suit today and realized that it fit’s my chest perfetaclly. It somehow is fitted to fit my DD breast on the left and my nothing on the right, how cool is that? I just had to mention that because I thought that it was so odd.
I ended up spending past week or so in the Hospice inpatient center because I was having too much pain to handle at home. They were so great to me and the doctors and nurses helped me to find enough comfort from the pain that now I think I’ll be able to stay home even when I’m having a hard time managing all the physical problems. I had told them that I didn’t want to have any medical equipment at home but I think I would rather have a few things here instead of needing to stay inpatient if I don’t absolutely have to. I’m still getting used to being back at home and I’ve been sleeping a lot and eating like I’ve never eaten before. I guess one of my new meds makes me really hungry all the time and of course I usually only want anything sweet. I think I’ve gained back ten pounds or maybe more but I really don’t care as long as I can get back to having some sort of the normal life I had before all this cancer crap started up again. It could be a lot worse and I’m very grateful for everyone who has been checking up on me although I don’t usually speak to anyone myself because I’m still very tired from all the new meds. I think it’s going to get better as I get used to takeing them and I will be able to do more but I’m definitely not pushing myself to get back into the swing of things too fast. I want to give myself time to get used to the new normal so that I don’t make things worse for myself. Rick and Jesse have found a two-week old kitten that some kids dropped off at Jesse’s work and they are bottle feeding it kitten formula every three hours, it’s too cute but I don’t have any interest in taking care of a tiny baby kitten. I hope it gets bigger fast so that we can try to find someone who will want to keep it forever. Not many people are willing to put this much effort into caring for a kitten so I’m OK with Rick and Jesse giving it a shot to get older and healthy enough to be adopted. They both say that they want to keep it forever but our other two grown cats don’t like it because it’s very noisy and so small that it scares them. Our dog won’t even get close to it. He’s scared of it too I guess. I wouldn’t drop it at a shelter because they would just put it to sleep and if we can try to help it I think we should. I think having this new baby in the house is changing the mood around here and keeping the subject of me all the time, I love that part. I’ve had my breakfast and fed the kitty so I’m going to try to crochet for a little while until Rick gets up and then I’ll go see if I can spend just a few minutes out back with my weeds. I miss doing things outside. Just sitting around makes me feel useless and that gives me more time to think about how bad I feel so I really do need to get back to doing at least a little at a time. Now would be a great time for M&Ms to just find their way to my house. The caffeine and sugar in them really do make me have more energy and put me in a much better mood. I still say that they are going to be my cancer cure. I havent found anything else that has the same effect on how I feel without taking more meds, and they just taste so darn good. I think I may have an addiction to them but if you’re gonna have an addiction then I say” bring on the chocolate”!
I wasn’t feeling very well a few days ago so I went back to the er to have an x-ray done of my chest to see why it hurt to breathe. They did the x-ray and took some blood and the Dr came back and told me that I had pneumonia again and that my sodium level dropped and the only way to fix it was to hook me back up to an IV and give me meds for it. I asked why my sodium level would drop and I was told that it happens after continued vomiting or diarrhea and I haven’t had either one of those things. I do only drink water and coffee but I hadn’t drunk any more water than I usually do. I was having to take a lot of pain meds and I still had a hard time breathing and having chest pain so I had a heart ultrasound done and when they finally figured out that my heart was fine the Dr went over all of the tests from the last time I was there and the ones that I just had and told me that I now need two biopsies done. I still need the four enlarged lymph nodes under my left arm checked out and now I’m told that I also need a lung biopsy done. I asked the Dr specifically if he was telling me that I have lung cancer and he said yes. I think I can’t be sure until after the lung biopsy though. I don’t just trust the word of any Dr anymore but he did say that he could see it on the scans of my lungs. Rick called the new oncologist for me while I was in the hospital and explained everything to her what was happening and she said that she would be happy to help me figure out what to do as far as treatment anyway. I don’t like having every decision that I make be a life or death decision. I prefer to pick what color I want my new carpet to be or what kind of vegetable to have with dinner. This cancer crap sucks! I feel better for a few days and just when I start to get back to having a normal life I get hit with something else. I didn’t sleep much in the last few days but last night when I came home I went upstairs and crawled into my own bed and woke up this morning. I even slept in until seven instead of my normal four thirty. It’s so nice to be home again. I’ve talked over my decision about chemo with Rick and I’ve decided not to have chemo. I will look into other treatments but the rate at which my cancer is growing I don’t want to poison myself if it would only keep me alive for a few more months and that whole time I would be sick. No thanks. I want to enjoy what I still have while I can. I didn’t give myself this disease and if I could get rid of it I would. I know that many people believe that chemo is the answer to cancer but it’s only a diversion and the chemo it’s self kills people. I am hoping that the new oncologist will have some way for me to at least get into remission for a while, from what I’m told about her she will be the best fit for me. I’ll be seeing her sometime in the next few days. My pain isn’t as bad this morning and I’ve had my coffee so hopefully I can make it upstairs to have a nice hot bath and then I’ll be calling around to find out where to go to get a mastectomy bra. Let’s just say that my bras no longer fit me correctly. Rick suggested that I have mom make me a D cup size corn bag and stick it in my bra…I’m thinking no.
I know that I’m supposed to feel a little discomfort…but this really sucks! I keep forgetting that I still have tubes in me and reaching for things and pulling at these damn tubes. Even if I just flex a muscle to move my arm it feels like I’ve pulled the tubes out and ripped the skin off. I know that by the time I get used to having them there it’ll be time to get them taken out though so I’m trying to just deal with it for now. Easier said than done. I want so badly to just fill my tub with hot water and soak in it until I feel better but apparently that would be bad, not to mention I still haven’t made the trek upstairs to even see my tub yet. I’m sure it’s still there and wondering where I am, how lonely my poor tub must be. I could curl up on my couch and see how many M&Ms I could eat but I don’t feel much like eating chocolate today…I know, that sounds terrible but it just doesn’t sound very good at all. I do have a huge tub of cookies that my mother sent over to me but that doesn’t sound good today either.
I think Cali (my cat) knows that I don’t feel good because she walks up and lays on my every time I sit still long enough. She has been trying to check out all the bandages and looks confused when I move her to the side that doesn’t hurt. She follows me from room to room and waits for me to sit still and as soon as I do she tries to find somewhere to sit on me. I feel bad for moving her all the time but she seems to go straight for the parts that hurt and lays down. Bob (our Pom) doesn’t seem to know that anything is wrong at all. He wants to jump around on me and play not noticing that I’m hurting. As long as he gets his food and someone pets him and talks to him all is right with the world. I think cats are more sensitive to how people feel than dogs are but don’t tell the dogs that. If I could take Cali to the hospital with me I think I would heal faster, I know I missed her really badly when I was away. I asked Rick to smuggle her in to me but he said no. Oh well, I know she’s here waiting for me when I come home. And even though Rick says he doesn’t love Cali I catch him talking to her when he thinks I can’t hear him and he gets up and feeds her if he’s up before I am so I know he has a soft spot for her. I’ve been told that our pets are spoiled but really they spoil us so it all evens out. I think today is gonna go by very slow just because I don’t have anything to do. I suppose it would be worse if I had a bunch of things I had to do so I shouldn’t complain about having nothing to do…but I know I will.
OK…so the night that Mom and I went to meet the women from the Breast Cancer support group and exchange Christmas ornaments I had a little cough. We had a great time talking with everyone and I absolutely love the ornament I was given because it was a tiny snow globe with a little trailer surrounded by trees and snow and on the outside it says “another trailer-park holiday”. I loved it. I felt like the baby of the group because I was the most recently diagnosed and most of the women are in various stages of remission and or recovery. What I like the most about these women is that even though they all have one terrible thing in common they mostly talk about every other subject and only return to The Cancer Discussion when one of them (or us now) is having a problem or just wants to share whats going on with them. I really had a great time but on the way home I was having a difficult time catching my breath and my chest started hurting worse than it had been so I had Rick take me for an x-ray as soon as I got home. I really thought I had better just check and make sure that my lung hadn’t collapsed again because I was told it might and the pain I was having felt like it did before. After two x-rays a VQ scan, and a cat scan the doctors decided that I had double pneumonia …again, and admitted me to the hospital…again. I don’t know why I was surprised. Three days after I was in the hospital the doc’s tell me that I don’t have pneumonia and they don’t know why my chest hurts so they start doing tests on me to look for cancer in my back where I’m having the pain. I don’t want to subject you all to every little detail of my hospital stay so I’ll just give you the highlights. When they were doing all the tests on me they found four more enlarged lymph nodes under my left arm but because I was about to have a mastectomy the surgeon didn’t want to do the biopsy at the same time because of the pain I would already be in, so sometime soon I’ll be visiting the operating room again. I stayed in the hospital right up until I had my surgery and I was doing ok until I woke up from surgery in the most God awful pain I’ve ever felt. Apparently I threatened a few nurses and screamed for them to send the surgeon in to me so I could beat her ass for not telling me that I would be in excruciating pain of my life. The nurses screwed up and only gave me half of the pain meds that were ordered for me so I was just screaming for them to stop the pain. I felt like they had been digging around in my arm and chest and through my side to my back. Oddly enough I didn’t hurt where they cut my boob off. One of the nurses tried to make me feel better by telling me that the surgeon had to cut through three layers of muscle to get the job done. That just made it hurt worse. I don’t remember everything from that day but I’m told that it was not an easy thing to watch because there really wasn’t much anyone could do to make me feel any better although everyone there tried. I do know that it was ugly in that recovery room. I stayed in the hospital right up until Christmas day. I went through two days of throwing up and having diarrhea and the doctor wanted a stool sample so he ordered me some amodium but told the nurse not to give it to me unless I could balance long enough on one leg and one arm hovering over the potty with a little plastic “hat” in it so they could see why I was sick. Really?!?! Who cares why…just make it stop for God’s sake! Ya know if I had a husband who would bring me some amodium from home that would have worked out great.( thank you Rick, no really…thank you) So, it did stop and I also managed to get them a sample which by the way showed nothing to explain why I was so sick. I got the feeling that they weren’t convinced that it was happening at all…it’s a good thing I got some on my nurse when I threw up or they never would have believed me.(oh shut up…it was only a little bit)
I probably should have stayed another few days in the hospital just because I knew I would have a terrible time at home controlling the pain but I really wanted to come home and spend the day with my family. I never did make it to Mom’s house for Christmas dinner but she sent me some of my favorite cookies and pie that Robin made. I’ve been sleeping on the couch downstairs because the stairs just look like pain waiting to happen. I still hurt pretty bad but I’m managing to deal with it. Losing my breast doesn’t really bother me as much as I thought it would. My biggest complaint right now is that I can’t get into my bath tub and soak. Rick has to help me wash around all the tubes and bandages without getting anything wet and I have figured out how to wash my own hair in the kitchen sink without any problems. Until today I haven’t even wanted to write or even talk to anyone because I’m just so damn tired all the time. I have no energy at all. I think today I’ll be making that second pot of coffee and see what happens. In a nut shell, my surgery sucked but my family and friends have been better to me than I could have asked for.