#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.

#137 I did it all by myself

Well I did a few things all by myself. First I found a way to fix this picture of Cali so that you can see what I saw in my kitchen window. I forgot to mention that she has thrown dirt out of this planter all over my garden window and I have to climb up on my counter to reach in there to clean it, so right now there’s dirt all over the place. I’ll get to it eventually. And, I cleaned my kitchen yesterday without anyone helping me…but I did have to take a break in the middle, and third I straightened up my front living room, although I still need to dust and vacuum that room and the others. I think I managed to accomplish a lot on one day…for me anyway. I didn’t even drink any more coffee than usual, but I did take something for pain that I don’t usually take so it worked better than my usual pills. Most people have to take a nap after taking anything for pain but for me every kind of pain pill works like caffeen.  They make me have less pain while also making me want to clean everything that I can. It works for me. And no, I didn’t take anything that I’m not supposed to take. My doctor changes my pain pills every few months back and forth between two different kinds so that when one of them stops working I can switch to the other one for a few months. That way I don’t build up a tolerance to either one of them and they keep working for my pain. If more doctors would do that with more people then there wouldn’t be so many people who are on ridiculous doses of any one drug.  I used to call them medicine, but someone I respect told me a long time ago that they are drugs and shouldn’t be confused with other kinds of medicines. That way you don’t forget to be very careful with what amounts you allow yourself to take. I’m so jealous of people who can first of all get through most of their lives without taking anything for pain at all, and also for those people who when they do have to take anything the tiniest dose works for the pain and they take a little nap and are fine when they wake up. I’m lucky that I’m able to sleep at night at all, but I’ve discovered Tylenol pm without the Tylenol. It’s actually just Benadryl, and I take it every night and I usually sleep just fine. I try not to take anything at all for pain at night because then I would be up all night wanting to clean something. You might be getting the impression by now that I’m a clean freak…but no. It’s my best friend who is a clean freak and she lives right across the street from me, and I’m embarrassed to have her see my house if it doesn’t look nice. She sometimes pops up without me knowing that she’s coming so just incase she does I try my ass off to have everything looking at least half way clean. I love having her over so I don’t want her to be uncomfortable being here. She even does the dishes after we have dinner or a bar-b-que, and I must be picking up on her habits because I’ve found myself doing her dishes when we go over to her house too. It’s so cold this morning that I had to put a hoodie on over my clothes as soon as I woke up. I love it when it’s cold outside, especially after having such a hot summer this year. I’m considering putting my Christmas decorations up a week or so early this year. I was talking to Diane yesterday and she was about to start putting hers up as soon as we were off the phone, maybe after I finish cleaning I’ll try to find someplace to put it. Last year I had it in my dining room, but that’s where all my plants are because I have windows on both walls in that corner, and I don’t know if it would be wise to put the plants anywhere where they wouldn’t get as much sun. The cold from those windows might be getting too cold for them anyway, so I’ll have to try putting a few of them in different places and see how they do before I put the tree there. I’m surprised that they’re still alive because while I was in the hospital with Jess for a week and a half Rick forgot to water them, so I had a lot of dead leaves to pick off when I finally came home. The plants are doing better now that they aren’t all dried out. I can’t be angry with Rick though because he had his hands full with a lot of other things and I came home to find everything else well taken care of. He even finish all of the laundry and cleaned all the floors. After I drink my coffee this morning I think I’ll try to finish my chores so I can look around and be very proud of myself for doing so much work. This is one of those times when I wish we had a smaller house, but if we did then I wouldn’t be able to get around as well in my wheelchair. I also have to write out everything that happened to Jesse in the hospital because one nurse didn’t take care of her when I came home to get some sleep. I’m  going to run this by Rick’s lawyer to see if he thinks that we need him to handle it or if we can just deal with it ourselves. I know it isn’t a huge law suit but I do think that they owe Jess some compensation for what they did to her, and we need to make sure that the hospital takes some kind of action against that nurse for causing Jesse to have to have medical intervention because of that nurse’s incompetence. I do have some pain in my shoulder and arm this morning but I think that I won’t notice it as much if I keep busy. I should probably start with cleaning up all the dirt that Cali threw out of the coffee cup planter.

#136 Cali took a dirt nap

I have a huge coffee cup planter in my kitchen window that I had a plant in it but the plant died. My cat Cali doesn’t like other cats and we have two other cats, one of them is still only half-grown and it loves to try to play with Cali. Cali never does let the little one get near her without screaming at it and trying to take its little head off…but the little one keeps trying. I was doing dishes yesterday and noticed that Cali was in the dirt in the coffee cup planter and had made herself into a little ball to fit herself all the way into the coffee cup. She actually ate the last bits of the dead plant so that she could lay in the dirt. She has to be the cleanest cat that we have ever had and spends hours cleaning herself, so her just chillin in the dirt surprised me. I took pictures and tried to put one here but it was way too big to post so I’ll just post the one of me holding the cup in the store. I’ll have to see if Rick can switch the pictures for me later this morning. I just got chewed out by Jess for me writing about her getting that picture in the mail of her speeding. Apparently my mother read about it and said something to her. I had to laugh a little because it’s not like anything in my life or my families lives have been off-limits to my blog posts. If she doesn’t want to get lectured then she shouldn’t be getting into trouble…it’s that simple. I completely forgot that Thanksgiving was coming up and now my mother wants to have dinner at my house this year. Rick and mom and I do all the cooking and baking so it probably does make more sense to have everyone here. We have a bigger house too so there is more room for everyone to relax before and after dinner. The only problem is that my oven is not set straight so everything we bake comes out lopsided. Rick has a habit of starting fires too because it’s a gas stove and the juices from the turkey tend to go over the side of the pan. Mom said that she’ll just cook the turkey in her oven and bring it over here, she only lives a mile away. Now I have to think of what I want to make for dinner. We usually have the same things with the exception of adding one or two different things because Rick and mom like to try new things. I personally like to just have what we always have so that there isn’t a huge mess and we wouldn’t have to buy extra things. I don’t get very excited about holidays because every year they all seem to be more of a financial burden than a family gathering. I do like to have my Christmas decorations out but every year I have to tell Rick that he should be happy that I put up our tree and decorate it. If I had my way that tree would stay decorated and sit in the garage when it wasn’t needed in the house. Nobody likes to help me decorate, but last year Diane came over to help me so it was definitely more fun. It so nice outside today, a little bit chilly but very nice. I love it when I can put clothes on that aren’t shorts and tank tops. I am curious to see if any of my jeans fit me this year. I seem to gain and then lose weight without noticing that it’s happening and right now I think I need to drop a few pounds before I try to fit into any of last winters clothes. My shoulder and right arm have been bothering me for a while now and I’m sure that I have something pinching a nerve in my arm. So far it isn’t anything that a pain pill doesn’t help so I’m still able to manage. It does hurt really badly when I walk on my crutches so I’ve been trying to avoid walking too much, but upstairs I only have my crutches to get around. When I ask Rick to take my chair upstairs for me to clean the bedroom and bathroom he does but I know that it hurts him to carry it so I don’t ask unless I have to. Jesse and her friend Danny are still sleeping but when they get up I think I’m going to ask if they mind helping me with some chores. If I try to do everything myself I end up not being able to finish what I wanted to do and my house needs to be cleaned. It does give me something to do though so I don’t mind cleaning. After I get everything cleaned I always feel better about everything, even if I have a little more pain it’s worth it. I managed to shrink the picture but now its really small so you might have to zoom in to see Cali. I tried…but I’m terrible with computers.

 

#135 I’m in a better mood today but still tired

During the time that I was in the hospital with Jess, I took a phone call from a lady at the hospital where I was supposed to be having my next surgery. This tumor in my arm is getting painful and I know if I wait much longer it will be too big to try to remove so I  know I shouldn’t wait any longer. I told that lady that I was going to have to reschedule my surgery and that I would call the surgeon to check his callender when my daughter was feeling better. I don’t want anyone to think that I’m in any way blaming this on my daughter. I think that if she was home and healthy when that lady called me to confirm my surgery that I would have found another reason to put it off. If I believed for one minute that I was going to be healthy after I have it removed then I might have a better attitude. But it’s only for pain relief that I’m even giving it a shot. When I spoke to the surgeon he told me that having it removed wouldn’t make me any better and that it might even cause it to spread faster. I don’t know for sure if it would help me or hurt me…so putting it off would have happened anyway. I’ll call Monday morning a see what they have open this month. I spoke to Rick about the finance issues and I think he might have found a way that he can go back to work. He won’t be driving a tow truck, but he was a call center manager for about fifteen years before he was in a truck so he wants to work for a nation wide company that takes calls for emergency towing and road-side problems. Who better to have taking those calls than someone who has the experience that he has. I think that the company also has full benefits too so we won’t have to pay out-of-pocket for his heart meds anymore.  It was a huge relief to me to hear him talking about working again because he went so long with his doctors refusing to release him for work. Hopefully they won’t mind if he does this kind of work. I have only been up for about an hour and already I feel like I need to rest. I think I’ll look and see what movies are on and relax for a while.

#134 I think I need some new ideas

I usually don’t have any issues with making due with what we have, but lately it’s gotten very difficult to manage because Rick still is undergoing medical treatment for his neck, and now we’ve been notified that worker’s comp has determined that he has a permanent partial disability so they want to drop him again. The doctor’s have said that he can never drive a truck again, so on top of everything else he’s going to need to find a career that he can manage to do without hurting himself any worse than he already has. I do have a disability check but it isn’t very much and now with having to pay out-of-pocket for Rick’s heart meds and trying to fix everything that needs fixing in the house I feel like we’re just slowly sinking. It doesn’t help that we have a lot of work to be done on our car within the next month or it can’t be re-registered. I’m always the first one to tell everyone to do the best they can with what they have, and to try to keep a good attitude, but I’m finding it hard to take my own advice these days. I try so hard to just get by, but I don’t know how much longer we can get by on what we have. Thank God for family who has loaned us money for bills when we really needed it and have agreed to be repaid when we finally get a settlement from him getting hurt, but I think it isn’t going to be very much…at least not as much as we had figured it would be, and there’s no telling when or if that will ever come. I’m happy with just being able to pay the bills, and I never go shopping for anything that isn’t necessary. I don’t think I’ve bought anything for myself since last Christmas. I’m perfectly happy with having a roof over my head and food on the table, but even those things are getting to be closer to a luxury. I wish that we could both just go back to work, but with as sick as I am, and as hurt as Rick is all the time I’m going to have to figure out something that would allow us to live normally again. There must be a way that I can still earn enough to keep us afloat until Rick can find a job that will be good for him. I was considering letting companies put ads on my blog but I seriously doubt that it would be enough to help. I need some good ideas on things that both Rick and I could do to fix things, so if you have any I’d be more than happy to hear them. I feel like crap today. I think that worrying about money is effecting my body. I let Jess take my car out last night to see some of her friends, she hadn’t seen them since she was admitted to the hospital so I figured that it would be good for her to get away for a few hours. Right after she left, Rick went to check the mail box and I had a letter from a near-by police station. I couldn’t imagine what any police station would need to send to me, but when I opened it there was a lovely picture of my daughter speeding in my car about two weeks before she started getting sick. Now, normally I would have called her cell and demanded that she come straight back and explain to me what the hell she was thinking speeding in my car, but after everything that we just gone through I just couldn’t do it. There are so many important things in life that don’t seem so important until you get a reality check…and I had just had one with her in the hospital. I did prop the letter/picture up between her medicine bottles, where I knew she would see them when she came home, and we went up to go to bed. I haven’t spoken to her much about it yet but that’s not a conversation that I’ll be forgetting to have. She usually does very well when it comes to driving so hopefully this will ensure that she pays better attention to the speed limit. It’s not like her to get into trouble, she usually does whatever she can to stay out of trouble. When I woke up this morning Jesse and her friend were sleeping in my family room where I usually watch the morning news, so I woke them both up and sent them to her bedroom, and I did mention a little something about the letter and told her we would talk about it later today. It was still really early so I just wanted her to take her meds and try to sleep for a few more hours because she’s still having  trouble with her throat. I hope she’s completely healed soon. I know she’s still hurting like crazy. Speaking of hurting…I’m hurting pretty bad myself today but hopefully a nice hot bath will help, it’s worth a try. I already picked all the dead leaves off of my plants this morning because Rick forgot to water any of them while I was gone and they were drying out. He didn’t manage to kill any of them though, so I am grateful for that. They just needed a drink of water and now they look fine again. Today I’m grateful for my daughter continuing to get better and my husband having a good attitude about everything, now I just need to get myself in a better mood and everything will work out as it should.

 

 

#133 I’m so happy to be home again

I just had the worst experience at a hospital that I’ve ever had…and I’ve had a lot! On the 26th of  October I had to call an ambulance to take my daughter to the er because her throat had swollen almost completely closed due to an infection that went crazy. After three days of IV meds she wasn’t getting any better so she had to have surgery to cut out the infected portions, including her tonsils, adenoids and part of her sinuses. I was told that after two days of IV antibiotics she would be well enough to go home. That didn’t happen. She has to take ativan normally because she get very anxious and has panic attacks, and after being there for such a long time with her, I wanted(and needed) to come home and shower and sleep for a few hours. She wanted to have her best friend come and stay the night with her so I sent Rick to pick up her friend and I headed home. On my way out I spoke to her nurse, gave her my cell number and explained that she needed to have her ativan and pain meds on time, and that if she was having any problems the nurse was to call me, and I would come right back. We only live four miles from the hospital so I figured it was safe to leave the girls there for the night without  any issues. When I woke up in the morning I had a phone call, not from the hospital but from my best friend who had called Jesse to check on her, and I was told that her blood pressure was sky-high because she was in a ridiculous amount of pain, and hadn’t had her anxiety meds. I immediately called the hospital and spoke to the nurse manager and said that I wanted her personally to give Jesse her pain and anxiety meds, and to call the hospitalist and that I would be there within twenty minutes and things had better be improving by the time I got there. I grabbed my coffee cup and Rick and headed back to the hospital as fast as I could. When I arrived at Jess’s room there were four nurses in her room and the nurse manager had called the doctor about the high blood pressure. Jess had to be given not only her pain and anxiety meds but also had to be given an IV shot of blood pressure meds. She’s never in her life had high blood pressure, so I knew something had to have happened while I was gone. Come to find out, the nurse that was supposed to be taking care of her had actually neglected her. Because Jess was in so much pain she wanted to get into the shower and breath the steam in the hopes that it would ease some of her pain so she pushed her nurse button to have her IV disconnected and covered up. It took the nurse over an hour to come in and unhook her. Then after Jess had her shower she pushed her button again to have her IV reconnected (her pain meds were in the IV so she could give it to herself when she needed it) and it took over an hour and a half to get the nurse to come back in to connect her to her IV pain meds, so in that time she had no pain meds and she started to have a panic attack because she was so afraid of what was happening to her. It made her pain uncontrollable, and a few other times throughout the night Jess had asked for some vanilla pudding, because that was the only thing that she could actually swallow, and was told by her nurse that she shouldn’t be eating that, it wasn’t good for her. Now, the surgeon had told us that she should eat as much as she could because it would help to heal her throat after the surgery, and for me to push anything that I could get her to eat or drink, it didn’t matter what it was as long as something was getting in her. I was furious at this nurse for not calling me when Jess started to have problems. To make matters worse this nurse treated my daughter and her friend like they were an inconvenience, and was rude and condescending when she did speak to them. Her friend had to go out to the nurse’s station to ask for anything, and it wasn’t even her asigned nurse that eventually helped Jess, it was the other nurses who finally brought her something to drink and a little cup of vanilla pudding. As soon as Jess was settling down and her pain was a little bit better under control I called for the floor nurse manager to file a complaint. She spoke to me and Jess and her friend for a long time and said that she needed to call in the Senior Director of Nursing for the hospital. The Director was very upset that a nurse had done this to a patient and assured me that they wouldn’t be taking this lightly. I told her as calmly as I could, that I wanted this nurse fired and that I already had a Lawyer on retainer because of my husband’s issues(which I do), and that I was not going to let this go until both Jess and I were satisfied. After this whole incident Jess actually started to get worse. She developed yet another infection. The amount of pain she was in had set her healing back a few days and she wasn’t able to swallow anything at all…not even the pudding. From crying in pain her throat had swelled back up to the point that she couldn’t even swallow water again. We were told that there was an issue with the shower leaking into the room below that needed to be fixed, so they moved us into a suite that was probably three times the size of the original room and my wheelchair actually fit everywhere in the new room so that I could get to Jess more easily when she needed anything, so that was a huge help to me. It took three days of her not eating or drinking and steadily getting worse before the hopitalist would listen to me. They had been cutting down on her pain meds, she couldn’t even try to swallow anything so she was then dehydrated, even though she was on continuous IV fluids. I finally lost my cool when a doctor walked into my daughter’s room and said that she was taking away the IV pain meds all together, and only letting her have oral pain meds when she still couldn’t swallow anything at all. They had to have suction running day and night for Jess to suction out her mouth because she couldn’t even swallow her own saliva. So in a kind of screaming, kind of crying rant I told this doctor that I wanted the IV pain meds doubled, not changed to oral. And, that I also wanted her to add Toradol for the inflammation as well as a rinse for her mouth that would help with the infection in her throat. She tried to tell me that that wasn’t how they would normally take care of someone after throat surgery, and I told her that I had no problem having her written up for my daughter being in worse shape then than when she was admitted…their way was obvously not working! I believe my exact words were “Don’t screw with me when it comes to my daughter’s health”! I convinced her to try things my way for one day and see what happens. By the next morning Jess was up walking around and wanted to go down to the cafeteria to pick out her own breakfast. The nurse at that time told me that she was only to have liquids until the doctor changed the orders and I said that I didn’t care what the doctor wanted, I was taking my daughter in search of scrambled eggs. The same doctor came in right after Jess had eaten her scrambled eggs and was dumbfounded at how fast she was getting better, and I couldn’t help but lecture her on listening to the patients and their parents, because she didn’t know my daughter as well as I did. She actually agreed. Jess is doing better now, she, very seriously, told me as she was getting better “Mommy, please get me outta here before something else goes wrong”. I don’t blame her, I was more than happy to be able to bring her home again. The spots on her lungs are pneumonia and are better now, she’ll be going to have everything checked out in a few weeks. Something about being so concerned about my daughter kept my mind off of my own pain and I wasn’t tired all the time. I don’t know if it was adrenalin or what, but I haven’t had any issues myself. I only took my regular daily meds and didn’t have to take any extra pain meds, that hasn’t happened in a long time. I usually have to take pain meds throughout the day just to be able to keep moving. I’m going to have to find something to focus on now so that I keep feeling as well as I have this past two weeks…just as long as it isn’t a health issue with my family. I thought I would throw in a picture of Jess in a Halloween costume  two years ago. I also wanted to thank everyone who sent well wishes and prayers for Jess when she needed it so badly. Thank you so much.

#132 Unbelievable!! Now Jess is sick!

I’m so used to having things go wrong with me but I hate it when my family has problems that I can’t fix! I haven’t been writing for a few days because I was just trying to get used to being home again and starting to get my house back in order when everything just went to shit again. My daughter has been sick for three days now with a sore throat and she went to the Dr to get an antibiotic. It didn’t help at all so I made an appointment for her to be seen by our pcp yesterday morning. He gave her liquid meds to take but she couldn’t even swallow them and by lunch time yesterday she had collapsed on my kitchen floor. Her throat hat almost swollen completely closed and she was having a really hard time breathing. I called 911 and they were there in my kitchen with her in under two minutes hooking her up to an IV and they were worried about her airway being so closed up that they rushed her to the er where they finally were able to get some IV meds in her to start getting the swelling to go down, and thank God for that because they were about a hair away from tubing her. She couldn’t talk all of last night so I stayed there with her to talk for her because they had a ton of questions for her to answer. You would think that this is the worst part of what happened. Nope. They did a ct scan in the er and the Dr came back and said that they could see the infection in her throat but he was more concerned with the spots that showed up on her lungs, and they couldn’t say for sure what these spots are. So they have now admitted her to the hospital and are calling every consulting Dr they can find to run every test possible on her because the Dr there knew about my history and agreed with me that they should make sure not to miss anything that could be more serious. I hate asking them to do more tests on her but better safe than sorry. Hopefully it’s just an infection that went crazy and will be healed soon so she can come home again. I don’t want them to rush anything though. She’s being very well cared for, but she told me before I left that she was sure that the hospital staff didn’t like me. I told her I don’t give a shit if they like me or not, my concern was that they take me seriously when it comes to my daughter and after a little coaxing they are doing that. I did think that I would have to push the Dr harder to do more tests on her than they would normally do but he totally agreed that it was important. So I came home to rest for a while and Rick is taking Jess her phone charger so she can text her friends. We’re still trying to find her best friend but when we do rick is going to pick her up and drive her to stay with Jess for a while. I have a feeling that I’ll be back up there in the recliner next to her hospital bed before bedtime tonight. I think I’ll feel better there.

#131 Police in my house?

I decided yesterday morning while I was drinking my coffee that I needed to get some exercise in to get my blood pumping like I was told to do by the Dr at the hospital. I do love going around the neighborhood in my wheelchair with Rick walking next to me but Rick had some errands to run and I was here all by myself. I don’t ever go out alone just in case anything happens or I start feeling bad. So I thought that it would be a good idea to find things to do around the house, and since I had been in the hospital all last week my kitchen wasn’t exactly as clean as I thought it should be, so that’s where I started. I think every dish we own was dirty and when Rick cleans the kitchen he always only fills the dishwasher and forgets about the stove and the counters. I washed every dish by hand and dried and put them all away and did my best to get everything else in the kitchen cleaned as well. I think I ended up spending about two hours just in the kitchen alone and was very disappointed in myself for not having enough energy to sweep and mop my floors. My daughter had her favorite little man (four years old) here for a few days and she had to go to work so I agreed to watch him until Rick came home to take care of him, but Rick ended up having to be out until it was bed time so I never did get anymore work done. I think I probably shouldn’t have done anymore than I did anyway because after sitting down for a few minutes I realized that I was completely wiped out. Luckily little man was very well-behaved for me so watching him wasn’t a problem at all. I went to get ready for bed as soon as Rick came to take over and right after he walked in the door he told me that he had agreed to also watch our niece for the night so that my sister could go to the er to have an x-ray of her ankle. So just as I was getting ready to fall asleep Rick laid down with the kids to watch a movie to help them go to sleep and I didn’t hear another thing all night. When I woke up this morning I had a house full of people…my daughter had two friends sleeping here, my sister and her boyfriend were asleep with my niece in the guest room, and little man and Jesse were asleep in her room.  There were people everywhere, but thank God there wasn’t very much noise. I woke up the last of the sleeping teenagers on my couches and told everyone to find something to eat and get moving so I could have my house to myself again so that I could try again to get my house cleaned. They didn’t make much of a mess so I just have to work on the floors and dust. Hopefully I can get it all finished today before I get too tired. I also was told that while I was sleeping that the police had to come in my house looking for a guy that was running from them and they had their guns drawn while searching my house. Come to find out the guy had jumped my back wall and went over the neighbors wall and they found him in a third neighbor’s back yard. I never heard a thing. I might have been bothered that there were cops in my house with their guns out looking for a criminal, but because Rick and I had to talk to the police all the time when we were doing repos we pretty much know all the cops in this area. Rick told me that one of the officers stopped to talk to him for a few minutes to ask if we had any tow chains left over that he could use for weight lifting. I’m still in a good mood today and Rick and I are here all alone again…just how I like it. I’m going straight to get my broom and mop and see how far I get today. I’m still not feeling my best but I’m willing to do as much as my body will let me do. I noticed this morning that all three of my bath rooms need to be cleaned too. I think I need a maid, but I can’t find one that will work for free…and I do need the exercise. I feel so much better when I’m able to get some of my cleaning done. Things just seem to be getting back to normal around here and every conversation doesn’t revolve around my cancer. That’s really a welcome change. I’m so ready for another vacation.

 

#130 Surgery canceled…Go figure

I have had an interesting week. I was having a lot of pain in my chest right under my sternum that went clear through to my back  and it didn’t get any better after taking my pain pills and resting so Rick had to call an ambulance. I knew it didn’t have anything to do with my heart but the EMTs always have to assume that it is a heart attack and treated me like it was. I spent a long time in the er and had more tests and scans that I can even remember, and what they found was that I have a pulmonary embolism, which is a fancy name for a blood clot in my lungs. They started giving me shots of blood thinners that gave me terrible bruises on my stomach the size of soft balls, so after about two days of that I made them stop giving them to me. The Dr told me that the blood clot was caused by my breast cancer and that it wasn’t unusual, although I haven’t heard of very many people having this happen. They decided that because I have so many things wrong with me that it was best if I went back on hospice care. I have been planning on going back on hospice but not for a while yet.  I did talk to someone from hospice and agreed that they could do the intake paperwork again but that I wouldn’t actually go back onto their service until I felt like I needed to. I am still happy with the care that I’m getting from my primary Dr and my pain Dr so I really don’t think that I should be on hospice until my current Dr.s can’t control my pain anymore. I feel a little bit better now although I still feel pain where the blood clot is. I was told that if I move around more and try to start exercising again that it would probably go away on its own. The blood thinners they wanted me to take would cause more problems than I’m willing to deal with and wouldn’t make the current blood clot go away any faster but it would help to keep me from getting another one. I would rather start going for my walks again than take blood thinners. I’m hoping that I can get used to walking(in my wheelchair) every morning, it is a lot cooler here in the mornings now so I think that it’ll be nice to get out in the mornings again. I won’t be having surgery to try to remove the tumor like I had planned because it would be too dangerous so I’ll have to try again in a month or so. Hopefully it won’t take very long for this thing to go away so I can have the surgery. I’m so happy to be home again, they wanted to keep me in the hospital and send me straight into inpatient hospice but I actually laughed at the Dr when he suggested that I do that. I’m so used to having so many things wrong with me that this is just one more thing on my medical records to me. I figure that as long as I am able to be at home and have my pain under control then there is no reason for me to be inpatient. I actually had to tell the Dr yesterday that he had fifteen minutes to get my discharge paperwork ready for me to sign or I was leaving AMA. He looked at me like I was crazy but I was just laying in bed watching tv all day and they weren’t doing anything for me that I can’t do at home. They did have everything ready for me to sign in that fifteen minutes. I have an appointment coming up in a few days with my pain Dr so I’ll have to explain all of this to him, I tried to get the hospital to call him and let him know that I was there but even the hospital Dr couldn’t get around his office girls so he has no clue that anything is even wrong with me. What I wouldn’t give for a normal life. I’m so jealous of people who never get sick, and when they have any pain they just take a Tylenol and everything is all better. But then again, what would I have to write about. 😉  Maybe it isn’t a blood clot at all…maybe it’s just an M&M that got stuck? It’s so nice to be back at home where I belong.

#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.