Saturday, October 31, 2009
So I must say it really doesn't feel like Halloween. Luckyily Garrett and Ashlee are doing the Haunted Hayride event so at least there is some Halloween spirit. We rarely get many trick or treaters anyway, but it just seems like Halloween came quickly and quietly this year. Megan went to Marcs to help pass out candy and they get alot of trick or treaters. I had a pretty lazy day, but feel like I got some good rest today. I feel more rested and my face doesn't seem quite so numb today.Ashlee is still pretty stressed about her accident. I know shes worried and I've tried to let her know its out of her hands now and to relax. It was an accident and we will get through this. I can't believe tomorrow is November 1st already! Soon we will have snow on the ground. HATE the thought of that. Also gonna have to find out the car situation for Ashlee as she may have to drive the van for a bit. I can't believe in 2 months Garrett will be 15 and can drive. Maybe no more drivers in this family. Enough. Clocks turn back one hour tonight and it will be dark out even earlier now. Days already seem so short. Guess I'll veg out the rest of the night since its already 7pm.
Friday, October 30, 2009
So today is one of those good day/bad days. I had a good day up until about 3:30 then it went down hill from there. This am, I went with Chuck to Auburn, got a few odds & ends for the house, and just got to be out. Came home around 1:30 and Meg was on her way home from college and was going to go to south paris to visit her work, so I rode to my work with her to visit with everyone at my office. It was an EXCELLENT visit and I had a great time visiting with everyone. They treated me to 2 beautiful baskets of goodies and just the warmth from everyone was very nice. I really love those guys. Everyone who was there, thanks so much for the little things that you all do, as they mean the most. While I was at the CareerCenter, I got a call from Ashlee she had been in a car accident. Luckily no injuries, and seems to be on the moderate side as far as how bad it was. Ashlee and Tyler hit head on in the school parking lot. Not clear who, if either was really at fault. I hope it will all come out in the wash. I know Tylers air bag deployed and Ashlee damaged the radiator and the whole front end of her car. The police did come and we had to file a report and report it to insurance too. Garrett was with Ashlee and he got a little seat belt rash but luckily both him and Ash were wearing their seatbelts. Tyler drove his car off and we hauled Ashlees away. Needless to say, it has been an exciting day. Dave is pretty stressed and tomorrow is opening day for hunting, so he is hunting for the day. As for me, I'm looking at a quiet mundane day, and right now that is looking pretty darn good!!!!!
Thursday, October 29, 2009
Well, today was an eventful day to say the least. I nearly burned my home down. Since my memory is so bad, I did something that could have had terrible results. I cooked some boiled eggs this am, but the unfortunate part is I forgot I was cooking them, my sister Kathy showed up and I left with her for the day. Needless to say, when I arrived back home around 2:30, the house was filled with smoke and the eggs were burned, exploded and black on my stove. The pot was pitch black and red hot. I am so lucky something worse didn't happen. I realize I will have to be much more careful with my memory. Dave says no more cooking for me. I will say it was nice to be out today with Kathy. We had a nice little afternoon, I got some paperwork sent to the insurance company, Kathy took me to Auburn and we ate lunch at Longhorns and we went to Mardens. Didn't spend more than $20, but had a fun time while I was out. When I got home, I cleaned up my kitchen mess, and then Uncle Norm came over to visit for a while, and then Janie Lucas showed up for a visit. It was good to say hi to Unc. Dave got home shortly after and those two chatted while Janie and I had a chat. She looks good, her spirits seem well, but she looks tired and drained from the toll the chemo takes on ones body. I so hope this treatment goes smoother for her than her first. She has a good attitude and has a lot of support so I hope she feels better soon. I have been a little shaky today, not really sure why, and my face feels weird, like numb but I don't feel bad or sick so I am going to wait til am and see how I feel. Its not like I feel sick or bad, just like a numbness on my face which could be the drugs. Megan is coming home for a bit tonight, she went to a home party and is going to come home for the night after so it will be nice to see her later. She has to be at UMF for 1 class tomorrow then she'll be home for the weekend. Guess that sums up my exciting day, and thank God I still have a home.
Wednesday, October 28, 2009
Had an outing yesterday, Chip had to do some sales calls in Portsmouth NH so I rode to NH with him just to get out of the house. It was nice just being out, but I did get tired. Its better than just sitting at home though which is what I think may happen today. Dave went for his massage yesterday which he said was nice. He said the lady that gave him a massage was like 70 though and I laughed at that. I think today will just be a quiet day which is ok with me as I could use a lazy quiet day. In the mood for scrapbooking today so think that will be on the agenda today. Also have to call my work to get a few things regarding my disability started and/or straightened out. Wanna get in touch with the girls at work as I would like to spend maybe 1/2 day over there just to hang out. Maybe on day next week I could ride over with Paula(Marc mom) and one of the girls could bring me home after lunch. If you girls read this, how does that sound for one day? Ashlee has been busy with the Haunted Hay Ride. That is coming up this weekend and she has been working hard on that. She had a frustrating few days as she has a lot on her plate and she feels overwhelmed. She says I'm being hard on her, I don't think I am, but I will try to back off a little. It just seems like she is gone all the time and really doesn't have time for home. I forget so much that Ashlee gets frustrated with me very easily. I admit I forget ALOT, but she has very little patience so that is a bad combination for her and I. We will just have to work on it a little bit more. It will work out.
Sunday, October 25, 2009
A very good day. Napped the early morning, but left at 1:00 with Meg, Paula (Marc's mom), and Matt (Marc's brother) to the chinese auction sponsored by the Social Learning Center where Matt attends. It started at 1:00 and we didn't get home until almost 6. We all won something too which was cool. Megan won 2 rounds of golf (that she'll give to Marc), Paula won a nights stay at the Fireside Inn in Auburn, and a gift certificate for a bar-b-que place in Auburn. I won a $20 gift certificate to Macs Seafood and a $100 cash bill. I spent $20 on tickets and came home with $120 in prizes so I did very well. It was nice to be out and about as usual. I am a little shaky again today, so I will mention to Dr. E when I see her. Not really bad, but enough to irritate me. I have an appt for a CT scan tomorrow. I'm hoping for good results. Hopefully there has been some noticeable reduction in swelling and tumor. Again wait and see. Hopefully the day goes by quick as some days are longer than others. Since I'll be out and about and Dave will be home with me the day should go by quickly. Getting a little tired now, so guess I'll head to bed.
Friday, October 23, 2009
Went to Chatham yesterday to visit with Kathy and she made fish and corn chowder. The fish was excellent and hit the spot. I did get a little tired by afternoon, but slept good last night. I missed Kaelyn because she was in school, but she called me to tell me she missed me and next time I need to come when she is home so she can visit with me. She is such a cutie!She has a soccer game on Saturday that I'd love to go to, but don't know if I can get there or not. I hat not being able to drive. Technically i can still drive, but not sure if I trust myself. I don't even dare to go to Tiltons. Chuck is going to pick me up later today so I can go to the bank, and if we have time he may run me over to the CareerCenter so I can pick up some miscellaneous things. I am not sure I will be able to get back to work, so I guess I can bring some stuff home. My mouth and blisters are getting better. My taste buds are just starting to come back so I can eat some regular food now. Brady & Bailey are driving me crazy right now. They were accustomed to me not being home and they were fine at night when we got home. Now that I am home everyday, they are very "needy" as in they want to be with me ALL the time. And thy need me to pet them and be in the same room as them. Baileys nervous energy is driving me crazy! She won't let me out of her sight. Guess thats all for now........
Thursday, October 22, 2009
Can't believe this weather! It is fall but feels like early winter. I like the cool weather but this is a bit early. Also, it is dark out still at 6 am which stinks too. I hate it when its still dark out when you wake up.To top it off, we turn the clocks back soon too so the days are definitely getting shorter. I was itchy this morning, so I think a lot of the peeling is getting near the end. My skin is still dry and flaky but getting there now. I get to see Kathy today. Shes making fish chowder for lunch so will get to eat lunch with her, Dad and the kids. She made a corn chowder for dad since he doesn't like fish. I'm surprised he agreed to lunch with us, but he was all for it. I worked on scrapbooking some yesterday. I completed one page with Breast Cancer as the theme of the page and I think it came out pretty good. I had some pics from the walk on my camera that I printed on my printer that I was able to use. I am going to do a separate book for the breast cancer/walk. I have to be in the mood to scrapbook and I was yesterday. Usually once I get started I do ok, its just the beginning that slows me down. My mouth is still messed up, but getting better. It would be nice if I could have a little bit of taste. I can tell texture and some taste, but mostly everything tastes the same. I am hungry.
Tuesday, October 20, 2009
Feeling pretty good today,just itchy mostly and the pain from the burns and dryness. Each day seems to get better. I will have the next 2 weeks to recover as I am on hold for all treatment until we get this cleared up good. Dr Erickson wants to start on a fresh clean plate and I agree with her. I still need to have a CT scan before we do anything next anyway and that has to be scheduled. My hands are a little shaky, more so than before, but Dr. E says that is from the steroids. Its not bad, just an annoyance. Ashlee had to do a school project and she did it on the breast cancer walk and her project came out really nice. She used pics from the walk. Was hoping to go see Kathy today, but I had no ride there, Chuck was working and I asked Dad but he had to work too, so Dad is taking me up on Thursday to visit with Kath. I was thinking about doing a scrapbook page today if I can get my thoughts together enough to do what I want. Its hard for me to express ideas. I know what I want but sometimes can't get it that way. Keep practicing I guess. I did get some new materials Sunday, so I guess I'll go see what I can get together.
Monday, October 19, 2009
Well,, the inlaws have hit the road and are on their way back to NY. It was a VERY good visit and went well. We had a good time, got a lot of shopping in, and had some good eat out dinners. Mostly casual, but good food and company.I think Wendy enjoyed her shopping excursion the most. She is quite a shopper. Gram got tired from all the walking and I can definitely relate as I was tired too. I feel a little better today, but its only 6 am. My face and chest are starting to look more like normal. I am still sporting a rash on my feet that I have to ask Dr Erickson about. I think it is still the Stephen Johnson syndrome. Just want to watch it and make sure it doesn't become larger, more itchy or spread to other parts. So long as it doesn't get any worse or spread I think I'll be ok. I see Dr. Erickson today, i think just to check in and decide if I still want to try the treatment plan of 5 days of temodar, then off for 3 weeks, the 5 days of temodar again with another 3 weeks off. Plan would be to try this for 6 months. Right now Dr. E wants to get me healthy enough to be able to handle any of the side effects temodar may have. Gonna be quiet here shortly as Meg is heading back to college, and Ash and Gar are heading to school, so home alone today. May watch a movie. I think I will watch "The Proposal" as we bought that yesterday. Keep sending positive thoughts cuz I hope its working!!!!
Saturday, October 17, 2009
Boy there is nothing like being home. It feels so good just to be able to do what I want to do and not have to depend on someone to get me something or ask for my meds, I can just take them myself. Most importantly, the comforts of home, my own bed, my kitchen, my living room, my family, all that adds up and makes a huge difference. The in-laws arrived on camp early evening last night and it was great to have them all here. We played a simple game called Apples to Apples and it was really fun, alot of laughing. Plan today is to get me out of the house. I have been inside for 2 weeks and I need to get out. Planning on going either to Portland or Augusta, just to walk around and relax. My healing seems to be coming along. My mouth is still extremely raw and blistered but I'm getting by. Face and back are starting to dry up so I am getting quite itchy once in a while, but I can take some benedryl for that. Realized I have to wear a hat, it is very cold out and the heat is going right through my head. My head has been freezing which makes the rest of me cold. I am struggling to not scratch right now cuz everything itches. Hoping the weather holds off so that Garrett and Ashlee can get home from Vinalhaven ok. They are there for a game and are suppose to come home today, but only if the weather will allow the ferry to get them back to the mainland. I'm praying they get home cuz otherwise they won't be home until Sunday, and that will be bad. They will miss the BC Walk and I know Ashlee will be pissed. Keeping fingers crossed weather cooperates and they get home today!
Thursday, October 15, 2009
haven't been able to post because I was behind a firewall at the hospital. Got admitted to the hospital on October 3, and got released today. 12 days in the hospital was more than enough for me. So I had a drs appt on Fri, Oct 2 and mentioned I had some hives and Dr. Mandell felt I may be having an allergic reaction to the dilantin and told me to stop taking it. I did, but by Sat nite it was so bad, I was admitted. As the days progressed, it became much worse, and then I was diagnosed with Stephen-Johnson syndrome. I had a pretty severe case, but now I'm on the mend. My whole face, neck, eyes, head, chest, back, were effected. I must say I did look quite bad, but things are looking better. I still have quite a bit of recovery and I will take it day to day. I hope to get through this weekend as an uneventful relaxing weekend and then refocus and get back on track for the plan to getting better.It was really good to get home today. Its so nice just to be home and to know I can sleep in my own bed tonight.Gonna go rest and relax. My sister-in-laws Denise, Wendy, Tracey, and my MIL will be here tomorrow night for a few days visit. I am excited to see them. It will be a nice weekend. I am hoping to go to the Breast Cancer walk in NH on Sunday. I want to just be there and be a part of the walk. I have alot of support and there are quite a few people who are walking with me. I would like to try to walk at least one lap, but we'll see. Again, THANK YOU SO MUCH TO EVERYONE WHO HAS BEEN MY SUPPORT THROUGH THIS. YOU HAVE MADE IT POSSIBLE FOR ME TO GET THROUGH EACH DAY.
Sunday, October 4, 2009
Have had a turn of events in the last 2 days.Face and neck broke out in large hives and red and face swelled severely. I came to the hospital saturday night and they admited me and looks like I'll be here till at least Monday. I look like Will Smith from Hitch! Also my face is so dried and burned it is unbelievable pain.Dr is going to run some tests later to determine what might be triggering this severe reaction. I know it is driving me crazy! Dave is my back scratcher!Also my mouth is swollen,lips are huge and blistered raw. It sucks to say the least. I just wish things would improve!Want to thank everyone who went to the benefit show and the harvest dinner. Both events were well attended and its great to see community come together.
Saturday, October 3, 2009
Today has probably been my roughest day. My head is really burned and bothering me. My face and ears are swollen, I look like "Hitch" when he had that allergic reaction, Back, neck and face covered in rash, looks like i have severe case of chicken pox. Im hoping it will be better tomorrow, cuz I sure don't think I'll see any relief today.I've been taking sudafed every 4 hours just to keep the itching bearable. That makes me tired which is not what I want. Gonna go rest again.
Not feeling great this am. Slept ok, but have developed slight cold symptoms and my lips are swollen 2ce normal size from radiation. Also have about 3 raw sores in my mouth and and overall feeling of pain in face, neck and mouth and rash all over chest and back. If I didn't have all at once, it wouldn't be so bad but it is irritated everywhere now. Since I have completed radiation now, I'm hoping rest will heal and I can move on. I am going to have a ct scan in October to see how things look and then we will decide next step. Hopefully there is alot of shrinkage.I want to thank everyone who came to my dinner last night and supported me. It was an awesome turnout!. Also hats off to the 7th and 8th grade classes for all their hard work.
Friday, October 2, 2009
Guess I'm up for the day. Have been awake since midnite and up off and off since then. Its 4:30 now and I can't get back to sleep so I guess I'm up for the day.Dad took me to radiation yesterday and we also ran some errands. He also took me over to buy a lobster to bring home to cook for lunch. Boy was it good, even though the taste was off from what I know it should be. LAST treatment today, Yeahh. It is at 8 am so I can get it and be done!!!!! My sister Kathy is coming down this am with her whole gang and spending the entire day. It is going to be fun with her here all day. I am anxious to see the kids, but Kaelynn especially as she has become my little buddy. My benefit dinner is this evening and I am honored to go to it. This town and the people in it are amazing! Talk about close knit community. This blog was started just to keep me busy, but it has turned inot more than that for me. I actually look forward to writing in it and it keeps my brain working. I see Dr. Mandell today and not sure what will happen after today. I have spoken with Cancer Treatment Centers of America and am considering meeting with them just to see what they say. They will fly Dave & I to Philadelphia to be evaluated, but now it is a timing thing. CTCA wants to see me before I start any new treatment, so it will be up to me & the drs to time this correctly. I have about a 10 day window to decide and get things moving.
Thursday, October 1, 2009
Wow, a new month! I can't believe September is over and we are now into October! I screwed up a little yesterday. I forgot to take my morning meds and I got a headache around 11, saw dr mandell told her about it nor realizing i had forgotten meds, told me to take meds immediately which i did and all is well now. No headache. It is the first time I have forgotten to take meds so I really need to be more careful it doesn't happen again. Also since I did get headache when I forgot meds, we have decided to keep steroids at 16mg per day for now. I went out on a limb yesterday and called Cancer Treatment Centers of America and spoke with them. I may meet with them in a few weeks to see if I may benefit from a visit with them. Not sure if I would get any benefit from it but I figured I want to at least check it out. They are very informed and I feel more comfortable about talking with them, now that I've started. I guess in the back of my mind I've never been sure that they are legit, but I do know Natalie Lowell met with them and so I guess I can at least check it out. Excited for this weekends events. I am going to a benefit dinner on Friday in my honor (Harvest Dinner) which I am proud to attend and also on Saturday, Skosh is puttng on a show in my honor. That should be a fun night as those kids are very talented. Should be a fun weekend.