kimne's Journal

8 weeks

Nov 10 2009 14:22

I've decided to be supper positive these next 8 weeks. I'm going to believe that the changes I've made personally will help. Being with family, eating better and trying to walk more. I'm not going to let this get me in a funk. I hope that my new cancer support group will help too.

I'm kind of nervous about going to my first meeting tonight. Why? I'm not sure. Maybe cause its admitting that I really have cancer. Or am that bad off. I hope I find someone that has the same problems with their hands and has some good remedies.

The hospital also has other activites for patients and their families. The two Tai Chi classes are on Mondays. I have to see if one falls on one of my short days and I can go. There is also a jewelry making class that I'm going to sign up for. I've been wanting to try it. If I like it Bonnie says she has a bunch of the stuff I could use.

I feel bad that I haven't been in chat. Or really kept up with everyones journals. I don't know what I do all day now.

Bonnie has left for Tampa to see family. Me & Nathan have to get together over what we are going to eat this week. I was looking for protien to eat today and turned my nose up at rotissery chicken (LOL that used to be all I'd eat). I picked shrimp. I'm just getting too spoiled. I hope I don't have to cook this week. The guys will be really disappointed. But they both like to cook.

Its raining here from tropical storm Ida. I got up at the usual time but feel back to sleep. I do have a few important things to do today. We are setting up a new bank account for me so I have to change things with my job.

Good news: my sister got one of the check for the correct to my 2008 tax returns. With the second check my recliner will almost be paid off.

I'm thinking about getting Gary & Bonnie the Family Fued game. Hey, its really for me since I love the game and live here now. LOL I know I should be ashamed.

So for the next 8 weeks - no thinking about funeral arrangements, no thinking about what to leave to whom, and please I don't want to here the phrase "make you as comfortable as possible" makes me think of people really on the last leg and getting morphine.

Update

Nov 09 2009 17:51

Well, as usual there is only bad news. The PET scan shows that the cancer is "caking" I take that as getting thicker. And there are a few lymph nodes in my chest that now have cancer. So I'm not elgible for the 'radical' new surgery. Doctor has decided and I agree to stay on the chemo I'm on for 8 more week (considered 4 treatments). I've only had 4 treatments so far with Dr Mathur. THe chemo I was on at JH was different. After the eight weeks I will have another PET scan to see how things are looking.

I'm off to watch family fued with Nathan. Then we are all going to play some (board) games tonight.

See you tomorrow.

Week in Review

Nov 08 2009 16:43

Here is my journal entry from Caringbridge.

Where has the last week went? I sat down twice to update everyone but got distracted. Its another beautiful sunny day here in Georgia. The move went well. Oh, except for the major stress Thursday and Friday (right before we left). Of course I was going to be stressed out.

Friday my sister made me go back to my doctor (in Waldorf) to get fluids. I'm glad that she did. I could really tell a difference. Saturday we got up early and got the car packed in no time. Had breakfast at Bob Evans and was on the road by 8:45am. The drive was so boring. Tucker handled it great. He was pretty quiet for the most part. Every now and then you would hear a tiny meow. When we got to Tammys and I let him out of the carrier he ran directly under the bed. He did come out to sleep with me.

Saturday night I got to spend with Tammys family. I was glad to be able to spend some time with my little nephew. I got to see him dressed in his costume to go trick or treating. They weren't out long since it started to rain. Then my nephew handed out candy while we sat on the front porch. I still smile when I think of this one little boy that came up and had the strongest southern accent.

Since its only a few hours between my sister & brothers houses, we didn't have to leave until 1pm on Sunday. Then we met Gary and my older nephew part of the way there. I drove my car with Nathan (my older nephew) from there to my Gary's house. I wanted to drive after a day of riding (on Saturday). We talked alot (or maybe I did) and got here in no time.

I was a little disconbobulated the first night. Getting some stuff out of the car. Getting Tucker settled. Trying to think of this as my new home and having a doctors appointment the next day with a new doctor.

Everyone (Gary, Bonnie & Nathan) went with me to the new doctors appointment. Dr F seems nice and professional. I guess I just don't get excited any more. He listed to my story and my long list of side effects. He answered all our questions. He decided to run blood tests and get a new PET scan. They took the blood in his office and set up an appointment for the PET scan. I'm scheduled for chemo tomorrow. We are staying with what I've been on for now. I'll get the test results back tomorrow and decisions will be made on what to do (or change) from here. I'm actually looking forward to it. I have to admit that I was crying yesterday. My stomach is getting big. I can tell its from the tumor growing. I'm getting shooting pains in new places that I worry are where the tumor has spread. I'm sure the size of the tumor is why I have a hard time laying down. I guess the results from the PET scan will confirm what I think or make me realize that I'm just imagining things. Sometimes its hard to stay positive. I feel like every time I am (when getting results) I just get bad news.

So after a week of no chemo you think I would be feeling great. Physically I feel crappy. I constantly feel like I'm going to throw up. My hair is falling out. I have patches of skin that itch and patches of really dry, rough skin that is breaking and bleeding. It burns when I try to put lotion on my skin. I've tried lots. Last night Bonnie gave me some Burt Bees that doesn't burn. My face is breaking out. (I never had bad skin as a teen) The doctor did give me a prescription to help clear it up. I have to sleep sitting up most of the time. I can't lay on my back without pain. Laying on my side is uncomfortable at best. I don't want to start taking pain pills yet.

So, good news. Nathan & I are getting along great. I spend most of my time with him since we are both home during the day. Thanks to him I got a great recliner to sleep in from Lazy Boy. (I was going to buy the first chair I liked at the first store by he talked me into looking around.)

I'm getting along well with everyone really. I've felt comfortable here all along. Only woke up one night and didn't know where I was. Tucker is still kept in my room. Every day I let him out to wander and get used to things. He is a big wimp and hasn't ventured to far. He has been very good and has been a big comfort to me too. He makes me laugh every day.

meh

Nov 07 2009 20:00

I've been feeling ill today. My stomach is just bothering me. Every time I eat I feel like I'm going to throw it back up. I stayed home all day.

I'm happily sitting in my new reclyner as I type this. I'm happy to have it although my brother/nephew didn't pick it up until late. I was worried that they wouldn't make it to the warehouse in time.

I was crying last night and some this morning. My hair is falling out, I have this horrible skin thing going on (it itches in places, dry cracking in others, all lotions I've tried burn), my tumor area gives me shooting pains, the heals of my feet hurt (so I'm walking funny), I'm not regular (and then I have bleeding from my hemorrhoids), I feel like a bad Mom to Tucker and on and on. I just feel crappy.

PETs

Nov 06 2009 10:49

Tucker ventured out a little this morning. He mainly stayed in the upstairs hallway. Then he went downstairs and as soon as I followed him he ran upstairs. So I went down first and called him. I sat in the front room where I could see him slinking his way down the stairs. He is always looking back to see how far he is from safety. He made it to the office/den then he heard Bonnie and went running back upstairs.

Went and got my PET scan yesterday. Met my nurse, Mark. He said he would be the same person I see everytime I get one done. He is a cancer survivor, which is nice. He was cute too. Very nice and chatty. And since I get chatty, I think if we didn't talk I would have been out of there 10-15 mins quicker. After the initial questions, running an IV line he took me outside. I thought we were just going to another building. There was a white tent set up right outside the door. I said "Oh were going into the hazmat tent." A nurse walking behind us laughed and said I never heard it called that before. But sure enough we stopped under the tent and went into a trailer. It had these big thick metal doors. I was put in a small room with a chair. After I got my radiation I was left closed in to sit and stew for an hour. When I had to have the scan done, I was in pain. I have a hard time laying on my back. Then you have to put your arms above your head. My arms started to hurt. I usually last about half way through before I want to start screaming to let me out. Doctor will get the results for my Monday appointment.

When Nathan & I got to the hospital I realized I didn't know what building we were to go into. I called the scheduling number to ask them. They asked me where I was. I said "Northside Hospital" They asked which one. I was like "I don't know" I was thinking "I'm calling to you find out where I am you dumby". I said "Cummings" that is the nearest city/town I knew. Finally they transferred me to someone that told me which building I needed to go.

Today Nathan & I are going to look at reclyners for my room. I really can't wait to get one.

I need to get going.

Have a good day!

Doctors Apt.

Nov 03 2009 09:02

Sorry I didn't update everyone last night. My appointment was at 2:30 and we didn't leave until 5. Then a stop at the grocery, dinner and bed. I was so wiped out. Just from the stress and not sleeping well. I did take a pain pill last night.

So doctor seemed nice enough. Very knowagable. I just don't get excited about these things anymore. Everyone in the office was very nice (I think its a southern thing ) Everyone went with me. Gary, Bonnie and even Nathan.

Doctor asked for a brief history so I went over the whole story. He was very patient and listened to my list of side effects. He said that the dosage I was given from Johns Hopkins wasn't neccessarily an over dose. I think he is just sticking by the other doctor.

This is the schedule for now. The took blood for a new 'base line' on my numbers. I don't think he got a copy of the one I just had done. I got for a PET scan tomorrow. Then Monday I start my chemo. We are sticking to the same thing for now.

The news is I may qualify for a rarely done radical surgery. Very few surgeons do it. I would have to go to Winston/Salem to have it done. Doctor said I have some rare kind of cancer that does what mine has done. Attaches to the abdominal wall but not the organs. They would try and scrape out as much cancer as possible from the wall and take out some organs. My uterus, I'm sure, would go.

I'm not excited. First we have to get the test back to see if he would even send me to the specialist. Then the specialist would have to decided if I really quailfy to have it done. And most important, I would have to decided if I want it done.

I did find out that my diet is not restricted. All that stuff about sugar and cancer is not true. I can still have red meat. But my brother has decided we should have fish at least twice a week. I'm game.

Well, I can hear Tucker meowing upstairs. I think I might let him out to explore a little this morning.

I hope everyone has a great day.

Stressed Out!!

Oct 30 2009 11:15

Me & my sister are both totally stress. We are snapping at each other. She did make me call the doctors and make an apt to get fluids.

Movers have now come and gone. My life was packed into 13 boxes.

Verizon is a pain in the ass to cancel internet. Why have on-line chat option when they cancel for you?

I have to go. Tammy will be back with something for me to eat soon.

Tucker is freaking out too.

chemo

Oct 29 2009 12:30

I don't know why the doctor doesn't think the chemo is working (besides the one test). The side effects are kicking my ass. I was sick all night. My feet hurt (which is a side effect). My hair is thinning. My skin itches and is drying out bad. Lotion I use on one spot burn on another.

I guess we shall see what new doctor says. I guess if this chemo isn't working than its not worth all the bad side effects.

People keep asking why it took until now to get the side effects. Maybe it just takes time. Maybe all the drugs from JH were messing with the new drugs. Who knows but I'm not making it up.

Comforting thought last night. I'll still be seeing Melkor on skype everyday. Plus since brother has wireless I can talk from bed.

I got a very nice Snoopy book from Melkor for my birthday yesterday. It will be going in the car with me. I kept looking at it last night when I felt bad.

Okay this should really be my last journal until I get to my brothers. I'm sure I'll have stories to tell about the trip.

My life sucks

Oct 28 2009 11:42

I guess that can go without saying. I was sick again last night. My fault eating greasy pizza. But it was good.

I have a short chemo day today (at 3pm). I'll ask the doctor to give me some fluids. Hopefully that will help.

Went to Mels last night for my birthday. Got lots of kitten loving. I realized the new calico bottle baby has an otter face (awww). She is so cute.

I still can't believe that I'm moving. That this is not a visit/vacation. I wonder how long it will take before I don't feel like I'm living in someone else house. Maybe never. Maybe I should think of it as a permenant vacation. I guess the family counseling will help.

I really do think I will start feeling better once I move. I'll be eating healthier and being around people will help. *sigh* I will not cry.

Blah

Oct 27 2009 11:37

Was sick all night. Took some Imodium. I can take more than the box says because of the chemo but I have to be careful because then I'll get constipated. Thats not good for hemorrhoids. So this is what my life has come to revolve around? My bowel movements. LOL

I've definately noticed that my hair is thinning. No problem yet since I have so much. I'm not too worried about losing it all. But now my skin has really started to dry out. I have patches on my face and am getting more wrinkles. This I do not like. Some creams I put on actually burn. I'll ask the other lady at chemo tomorrow what she uses. I will admit that I am vain when it comes to my face. Hair can be replaced. The darker color (of my hair) is its natural color. I have dry patches all over my body. And places that itch and seem to have a rash. I'm bad about scratching.

I still have packing to do~ Doh! I'm the worlds worst procrastinator. My sister will freak out when she gets here. I'll probably just start throwing stuff in boxes.