Sunday, November 29, 2009
Well I haven't posted for a while so I figured I better post something even if its short and sweet. I've actually been trying to stay busy since Thanksgiving. We went to Dennis's for thnksgiving dinner and it was delicious as always. Lorana always puts on a good meal and this year was no different. Johney was there and he brought his girlfriend who seemed very nice. Ashlee test drove a car that Papa had, she fell in love with it, worked out a negotiation with Dennis and is going to buy the car after the first of December. She has to pay 1/2 now and then payment monthly for the rest. She is quite excited about hving a car again. It is a 98 honda civic, automatic and in good shape. She can't drive it though until she has made at least a paymnet. Also went shopping the day after thnksgiving. Actually we had a good time, didn't really have to be anywhere for anything specefic but I was at Walmart at 8 pm on thursday and the store didn't open until 5 am friday morning. Me, Megan, Kathy, Chuck, and Brandon went and we were firts in line and it just was a fun night talking with the other customers. Saturday was a veg day.On Sunday, Megan & I went to a bead party and I bought some beads for my bracelet. Tomorrow is monday, and back to the same ole grind. Have been a little nauseaus but hoping that will subside in the next few days. I really have just been feeling blahhh.Not really sick, but not really feeling good either. Hopeing things will get better ofver the next few days.
Sunday, November 15, 2009
Haven't posted for a few days, but even still not much to talk about.Went to have a foot massage on Thursday night with Kath, Meg, and Ash and that was very relaxing. I went to Kathys after and spent the night and we went to Portland on Friday for Rutgers drs appt. After Rutgers appt we went to ACMoore for some scrapbooking stuff. Kathy came back to the house for a little while to visit. Nicole's shower was Saturday and that was the only real thing going on. The shower went over very nice, no major arguements, the food was good and there was some people there that I hadn't seen for a while so it was nice to see them. I think today is going to be a LAZY day. I have nothing planned and Dave is working on the 2nd bathroom. The toilet isn't working correctly so hoping its just the valve and not that the septic needs to be pumped. I will know soon enough, hes been working on it for about 2 hours. Praying for just a slow toilet. Actually changing the subject, I got a letter from my disability insurance and they are only willing to pay from the lower payout vs the higher payout due to when I made a change on my policy. Because I changed in Jan 2009, I can only collect on what the policy was in 2008 because you have to have the diagnosis for 1 year with no claim. Cost me $200 per month by only being able to collect the lower amount. I may have to call and dispute that since I paid the premium for the higher amount. Insurace will screw you any way they can
Tuesday, November 10, 2009
Today seemed to go by sooo slow..... It is 7:20 and it seems like it should be 10 pm. With it getting dark so early it makes the day seem long. I had a drs appt this am with my eye dr to check my glaucoma. Unfortunately I have slacked off on taking the eye drops and the pressure is back up in my eyes so I need to get back on track with that. Its not that it bothers me, its just i forget to put the drops in. I have to go back in Jan and hopefully the pressure will be down again. My temodar came today, only got 10 pills for a 5 day period so had to call drs office, hopefully can get 30 day supply so I have to pay co-pay 1 time rather that 5 times. Makes a difference of $25 or $150. Same prescription just different cost due to how it is dispensed. CRAZY! I am gonna start the temodar tonight, still hoping for no reaction. I think I've had my fair share of reactions, so this better go smoothly! Saw Janie was online today, so hoping that means she is home from hospital. I tried to connect with her but no luck so Janie if you read this, drop me a line hope your doing well. My Dad took me to my eye drs. appt today and that was a little scary. His driving makes me more nervous everytime. I did get Garretts contacts straightened out so he is all set with his contacts. He did have to change solution so hopefully he won't have bloodshot eyes all the time. I saw Mary Dempsey at Dr. DeRosas today and we chatted for a bit, but Dad was with me and he chatted with her for a while. He really likes her alot and thinks very highly of her. She really is an angel. Diane, I know you read this so just want to say a personal hi to you. I love it when you email me back. I know time is precious and I really appreciate the email, cuz I miss you guys so much at least when I get an email from you I feel connected. My memory is better everyday, but we will see how I do on this new medication. I don't know how people can NOT work. Not putting anyone down who doesn't work, I just find it so boring. My choice would be to work, but to each his own. I do enjoy some days of laziness, but couldn't stand it for a long period of time. I may have to find something to do that doesn't require me to drive that I can pass the time with. Plus of course I want it to be fun, exciting, and interesting, HAHA. Out of here for now.............
Saturday, November 7, 2009
Had an awesome visit with the girls at the CC yesterday. It was nice to catch up and just see and hear what everyone else is doing. Its funny how even with time some things never change. Everything was the same, yet I could see things were changing. Talked with Dave this am, he had quiet night in NY. Both him & Marc were tired from a short night and long day on Saturday. They have a big day planned today with the Alden state game and then hanging out with the fam and drinking. Didn't have anything on my plate for today, but Gail called me and is going to Auburn to get a few things so I may ride with her just to get out. I get so bored at home. Both the girls are home but they are sleeping now and I'm not sure what they are doing today. I did 2 pages of scrapbooking last night and was happy with both pages. I think I might go to Kathys tomorrow, at least that is the plan. Theres always something going on there so I'm sure it will be packed with things to do. Kathy is going to make a big spaghetti dinner so that will be good as I love spaghetti. It is cold outside today, I have turned my heat on, but I hate the thought of using oil already and we only have 1/4 of a tank until next month when I can afford oil. Trying to conserve and use the wood stove too. Its chilly, but still ok. Weather is suppose to be nice all weekend so I plan on enjoying the upcoming days.
Thursday, November 5, 2009
Spent some time with Gail and Riley today. Riley is such a cutee! Gail came and pick me up and took me to her house for a visit was nice just to sit around and chat and enjoy Riley. Then we went to Antigonnis and had lunch. It was an enjoyable morning. Gail then brought me home and I vegged out and relaxed some. Dave got home early and him & Marc headed out on their trip like 2 little boys. They are so excited and I'm sure they will have fun in NY. I think tonight is going to be an early night as me & Ash are both exhausted for some reason. Garrett is still full of energy, he is going on an overnight visit with some friends from school tomorrow. Meg, if your reading this we had tacos for supper tonight from Tiltons and they were awesome. Sorry you missed them. I am happy you are home tomorrow though, I miss you. Hoping to stop by at work tomorrow if Meg comes home and goes to her work for a visit. Getting into a routine here now, so days seem to be better as I am feeling better every day. I was hoping the afternoons would warm up as I'd like to get a walk in, but it has been cold outside and I hate the cold, especially the wind. If we get a warm day, I may get out for a walk. Did a little research on the chemo that I am going to start and wondering how I will do. It says that it can cause nausea but I'm hoping I can take enough anti-nausea meds that I feel ok. I may be perfectly fine which is what I'm shooting for. I start that next week so I still have a few good days for sure ahead of me. Getting tired so gonna hit the hay early tonight.
Wednesday, November 4, 2009
JUST LOST MY ENTIRE POST!!! GGGRRRR. Well today I went to Dr. Ericksons and we reviewed the CT results from last week and I got very good news. The tumor has reduced in size by 80% with the radiation treatments. That is significant shrinkage and Dr. E. seemed very pleased with the results. I was too, although would have been great to say NED, but I will take 80% reduction for now and continue to hope for more shrinkage over the next few months. I am going to go on to a chemo regimen too starting next week. I will take Temodar (chemo pill) for 5 days then have 3 weeks off, then back on to the Temodar for 5 days, then another 3 weeks off. I will follow this for 6 months as long as I show progress. Now it is a continued wait and see routine. Dave & Marc are heading to NY tomorrow for a visit. They are both so excited, they are like 2 little kids going on a fun trip. Wait, they are 2 little kids going on a fun trip...... haha. I think Dave needs this to get away and just have some fun. Me and the girls have a quiet weekend planned and Garrett is going to a weekend getaway with some friends. I think Megan is going to her work on Friday afternoon to visit her co-workers and if she does I am going with her and have her drop me off at my work so I can visit my coworkers too. Girls if you are reading this I may be there on Friday to visit and I'll let you know for sure later in the week. Well, my computer keeps screwing up and I don't want to lose this again so I'm outta here.
Gonna be just a quick note this am, as I have drs appt today and am hoping have some new news to post after my appt. Yesterday was sooo boring. My routine is so predictable. Up at 6 am, watch morning news, then Today show, then Price is Right, and then tv off for day. I usually try to read or get something together to scrap. Little bit worried about the incoming weather. It looks like we might get some snow and Dave & Marc are headed to NY on Thursday. Weather is saying 2-3 inches so hopefully they don't drive into much snow. Sunday and Monday are looking really good though and Ash just found out she doesn't have to work on Sunday so maybe we will all try to do something fun. Well, until later......
Sunday, November 1, 2009
The time change has been weird today. Was ok this morning, but as the day went on, it was dark out like around 4:30 and it felt like it should be so much later. Went to Bangor today. I know, crazy right,,,,, well I was bored and needed to get out of the house and see something different. Dave wanted to work on Ashlees car so Chuck said he'd drive me to Bangor if I put gas in the car. Sounds fair to me, as I'd have to gas my car if I was going anywhere. Walked around the mall for a bit, went to Joannes fabric, Target, and the Hallmark store where I bought myself a wallet to match my Vera Bradley purse. I splurged a little, but I figured I deserved it after the last few weeks. Garrett has Armand over tonight and they get along well, so he was able to stay occupied for the day, and Ashlee went to Sumner for a get together for Abbie. Meg spent the day with Marc. Dave went to work on Ashlees car and it has been decided that the car is beyond repair and will have to be junked. Figures, we just put $200 work/parts into it 2 weeks ago. Brand new struts are just one example of what she just replaced. Gonna try to sell it for parts car so if anyone interested in a 1995 Mercury Tracer (exact car as Ford Escort) for parts let me know. Car was in great running shape and body too. For now, Ashlee will have to drive the van or be on foot. We made it clear to her she needs to buy her own car if she wants one. Tired from the day of shopping and overwhelmed with decisions that have to be made so gonna hit the hay now.
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.
Wednesday, September 30, 2009
Wanted to mention that I got to go to the boys and girls soccer games yesterday and it was fun. Girls played stronger than I've seen so that was good, unfortunately we still lost in double overtime 3-2 but they def put on a show for the spectators. The boys game was a little more successful as they won. I think the score was like 5-2 but the boys did great. Garrett amazes me how tough he is. He gets knocked down and he bounces right back up like a champ. Ashlee seemed to trust her knee a little more yesterday. Even though mentally she knows its fine, I still see a little reservation, however, I saw more of the "old" Ashlee yesterday than I have so far. I definitely think she is on her way to 100%. Also, I really want to acknowledge Nate Corson in the boys game yesterday. He had a couple saves that were literally INCREDIBLE!!! You played outstanding Nate! You made for an exciting game! Just want to say to both boys and girls teams thanks for putting on a good game of soccer for the fans!
Was quite busy yesterday which was good cuz I slept quite good last night. Still up early but good sleep when I did sleep.Plans for Tracey, Wendy, Denise, and Mom(Virg) to come visit is closer in the works. Looks like they will make it for a 4 day weekend so I am excited that we will get to spend some fun time together. This is going to be a true fun visit and I can't wait to just have fun with them. My head is still driving me crazy because of the itchiness, but think that will subside after radiation finishes. Head is very dry and red(actually my head is white and my face is red). I saw Dr. Mandell yesterday and the plan is to finish radiation on Friday and then she will schedule me for a CT scan to see if we can notice any decrease in tumor size. I think it must be helping because my symptoms have improved but please pray for positive news anyway. I think Dave will feel better too once I have scan and he knows one way or the other if this seems to be working. Ok, I'm watching Kevin on Channel 6 weather and hes saying maybe SNOW tonight. It would be just a dusting but come on!!!!!! I am planning on going to the Harvest Dinner on Friday (Yeah), and then the Skosh show on Saturday so I am thrilled to have plans and honered that these events are being put on for myself and family. The support in this town is amazing and I am proud to say I am from Buckfield.
Tuesday, September 29, 2009
Jeanne I wanted to say I had a GREAT time visiting with you on Monday. I wanted you to have your own post because it really was so great to see you. I love how we can go months/year without speaking and just sit down and pick up like we saw each other yesterday! You are what I consider a true friend and I thank you for that. I think our Moms would be impressed and proud of our friendship so hats off to them for doing a good job with us, LOL.
Up early today, my head is so itchy its driving me crazy. The skin on my head is very dry from chemo and hair stuble is still falling out so it is very dry and itchy. I did buy some aloe/anti-itch cream for it and that definitely helps. I just have to remember only 4 more treatments and then radiation will be done. Had a good visit with Dr Erickson yesterday. Treatment plan seems to be going as well as we had hoped. Will continue on Temodar (chemo pill) for up to 6 months. Pretty strong medication but definitely worth the benefit. Plan still seems on track so news is good. I still feel very good with the reduction of steroids so the steroids must be doing their thing by reducing the swelling. I have had no headache either so that is really good. Other than a little fatigue, I really feel pretty good. Kathy is taking me to treatment today and we are meeting Aunt Deb for lunch. Its always a fun day to meet up with Aunt Deb and I know with the 3 of us together we will def have a good time. I actually have a plan for everyday this week I think which is good so long as I can stay busy.This weekend is packed, I am going to the Harvest Dinner on Friday, and the Skosh show on Saturday. If anyone has the opportunity they should try to get to the Skosh show. These kids are so amazingly talented and its a guaranteed good time. Guess I'm gonna go watch Kevin and see what he says about the weather for today.
Monday, September 28, 2009
Today is a good day. Yesterday was very good. I did scrapbooking with Gail, Crystal, and Megan and it was exactly what I needed. We spent 3 hours and I was feeling really good and slept great last night. It was much better for me to do it with the girls cuz it helped with ideas, we bounced stuff off each other and I was really happy with the 2 pages I got done. We are going to try to do another scrapbook date, but not sure when yet. My head itches like crazy right now with the hair loss. I wish it would just come out, but it is taking its sweet time. I see Dr. Erickson today so I might have new information, hopefully good news, and I have to say I really do feel better than I did 2 weeks ago. My biggest challenges right is the memory, although I do think it has gotten better. I also find I have to move slower as my balance is off but that is manageable. Not sure if they will adjust my meds at all as they seem to be working good right now and I hate to make changes if things are working. I guess my next step with Dr. Erickson now is to decide if we will do chemo long term or just the 4 week plan. Hopefully we will talk about that today. Dave is taking me to the drs today so hopefully he can hear first hand what the dr says and it might ease his mind. He still has questions that really don't have answers yet, and he is struggling with that. He has been my rock though and I know I wouldn't have been able to get through all this without his incredible support. Love ya Dave!!!!
Sunday, September 27, 2009
Up early today, can't seem to sleep was up at midnite and again about 4 this am. Will plan for a nap sometime today. Dave has alot he wants to get done today. Ashlees car needs new struts so that is first on his plan today. Hope they are an easy job for him. It is suppose to rain today, but hoping its not an all day rain event or heavy rain. I am scrapbooking with Gail, Crystal and Megan tonight so that will be fun. Not sure how I'll do with the layouts as I normally take a long time to decide what and how I want things so this will be interesting, but I'm excited the girls are coming to do it with me. New ideas are always good and I need some new ideas. I'm not a big scrapbooker, but I do like it and find it relaxing. I just take a while to get a page done. Megan can do about 3 pages to my one, HAHA. Will let everyone know how the scrapbooking party goes and hopefully I get a couple pages done tonite.
Saturday, September 26, 2009
Having trouble getting on a sleep routing now. I am getting enough sleep, its just at weird times. I fell asleep about 11 pm last night but am wide awake since 3:30 this am. Tried to fall back asleep, but not happening. I find I am falling asleep earlier, but also getting up earlier. I need to try to get back on routine with sleeping. Luckily I can take a nap during the day if I need it. So far I have been handling radiation well. I only have 5 treatments left and honestly I still feel quite well. I do feel that my memory is better than it was, but obviously not great. I believe the more I use it and the more exercise the brain gets the better, so I am trying to do things that stimulate brain activity. Tim and Candy came by last night to visit and for supper then we played cards. It was a really fun night, alot of laughing and I needed that. Plus we had a smorgasbord for supper and everyone was really happy with a GREAT meal. Ashlee and Garrett have a soccer game today so excited to see them both play. Should be a good game too its against Richmond. Hoping good games from both teams (boys and girls). Hair is driving me crazy right now. It is falling out splotchy and I look like I have the mange. Don't mind that its falling out, just wish it would all come out cuz it looks crazy right now.
Thursday, September 24, 2009
May do 2 posts today as I am up very early this am. I fell asleep about 10 pm (yeah), took meds at 12 midnight and slept til 5 am. That was a good 7 hours sleep so Im feeling good so far this am even though its only 5 am now. My sister Kathy is coming down today and taking me to treatment and I think she may look for a new vehicle too. She has had crappy luck this last 2 weeks with cars and now she may end up getting new and good for her. Her vehicle was damaged in an auto accident so Marc may get a new vehicle (at least new to him). Kathy says its Marcs turn to get the new car so shes really looking out for him. Right now they are borrowing a car thats a 2-seater and with 7 kids and 2 adults its an impossible fit. Hopefully her & Marc find something they like soon. All Kathy's kids are in school now except 2 so when she comes to visit now she only has Zoe and Rutger. It almost seems weird that she has only 2 little ones with her. Haven't heard from Janie yesterday so hoping all is well with her. I am a little worried as I also haven't seen her on Facebook so Janie I hope things are still ok with you. My thoughts are with you Janie. Until later.....
Wednesday, September 23, 2009
Saw Dr. Mandell yesterday, a few plan changes but still happy with progress. Very excited for today because I am going to wee my work friends this afternoon. I have radiation then visiting with them for a few. Its amazing how much our work friends become such strong people in our lives. If your fortunate to have a good workplace like I have, they are definately more than just co-workers. They know more about my life than some of family (Poor co-workers haha). I have to say my entire workplace and the company in general has been very supportive. Even though it is a nonprofit agency I feel they consider their employees interest and that is important to me. I am not sure that work will be something I can tackle after all this, but I'm hoping for some type of work stimulation. I think the more exercise the brain can have, the better and boy do I need to exercise my brain for this job!!! I honestly believe thats why I am doing so well right now is because my job did require ALOT and now its paying off. I slept rally good last night up at midnight for meds and then fell back to sleep around 1 am and up for good at 6 am but good solid sleep again. I think staying busy daily helps me sleep well at night too so I'm gonna stick to this routine for now.
Monday, September 21, 2009
I have had a very good afternoon today. Got some disability paperwork started, mailed some things for work, dropped papers off at drs, got radiation treatment, went to lunch with Chuck at Longhorns (I think my new fave place.), came home and went for walk with Janie, filled my pill slots and now I'm relaxing. Trying not to do toooo much, but enough to stay busy so I can sleep well at night. My sister Kathy is coming down tomorrow so I am excited to see her. Shes bringing Zoe and Rutger so it will be a fun visit. She will take me to my radiation treatment tomorrow so another one will be down. Looks like I have 9 radiation left, but that could change? Tomorrow is my last whole brain and on Wednesday I start some new radiation so I'm not sure what or how that will be. Wait and see I guess. I see Dr. Mandell tomorrow too so I may have some new plan or more questions after tomorrow but for now thats whats on the agenda. Garrett at soccer practice right now, and Ashlee had to go to Auburn for something so the kids should be home shortly. Dave is down visiting Uncle Norm as he came home from hospital yesterday. I know he hates the hospital---who doesn't. I guess Unc can't work for 3 weeks, POOR Laurie, I know that is gonna be tough having Unc around for 3 weeks unable to work. Uncs not one to sit around and do nothing. I'm thinking of ya! Well, gonna go think about supper now, so off for now.........
Sunday, September 20, 2009
ok, now its COLD outside. What a change in the weather just overnite. I knew it was coming but it is darn cold out this am. Just watched weather though and suppose to warm up and be nice day today do thats good. I guess its safe to take my AC out of the window now, hah. I actually like the cool weather but not the cold. It makes my bones hurt and I'm feeling it today. Legs are a little achey. Have to make a trip to Auburn either today or tomorrow to get more meds. Seems like I run out of something everyday, gotta get a better handle on the medication supply. Excited to see Dennis and Lorana today. They are coming to visit and I always love to see them. Even though we don't see each other often, I value and love my time with them. I may not tell Dennis enough, but he is a huge part of my life and I love being able to see him and the time he spends with us and the kids. Dave just came in and he has decided to get moving early. He woke up with a cold sore on his lip and man it looks painful. Thats gotta suck. Well, guess I'm gonna sign off for now. I'm sure I'll be back on later.
Saturday, September 19, 2009
Well today has gone well so far. I slept weird last nite fell asleep about 11pm and up at 4:30ish, but felt the sleep was good solid sleep. Have been up all day, but still doing ok. Went to a service for a friend who lost her battle to this terrible disease today and it was very sad but also comforting to see and feel the love and warmth in that room. There was alot of family and friends there and that is what is should be about is celebrating the life, not the death. I know I'm getting deep here, but its where I'm at right now. Had a great lunch at the reception after, great job to the family. Food is always a great comforter- just look at the size of me... Went to Walmart after to pick up prescription and I think I have invested enough money in Walmart that I must be a partner or something. Ashlee went to North Conway with Kyle and his family today so I hope they had fun. Megan and Marc went to a wedding (beautiful day for a wedding), and Garrett had a soccer game which Bucks dominated at today. Garrett scored and he plays defense haha. Hats off to Dave for all his patience. I don't think he was aware of how many patience he had until now. He has put up with alot of my problems always keeping it cool and being respectful to my and my deficits. When I have to ask him something 10 times over and he just answers me like its the first time, then I know he really does love me. (Not that I did ever doubt it). So to everyone who sees Dave out there, pat him on the back too cuz I couldn't ask for a better husband. Signing off for now........
Friday, September 18, 2009
Well, just got back from another radiation treatment. Went smooth so thats good. Wore my breast cancer shirt the boys and girls soccer team made for me and it was a huge hit at the hospital. They all thought that it was so awesome to see such support from high school kids. I agree. Dad got me to radiation safely this am, he actually does ok if he has enough time and knows where hes going. I also think it helps him be a part of this by taking me to some of my appointments and I certainly appreciate the ride. A little scary but not bad. Probably gonna go find some lunch, Ash just stopped in to grab something and now shes back out the door. Always on the go!
Well, I am going to attempt to start a blog today just for the fun of it and to keep my mind busy. Today is radiation treatment #8, with 7 remaining. I am getting whole brain for now, but will start getting focused on Wednesday, so not sure how that will change things right now. The actual radiation isn't too bad, its quick and I am noticing its working but definitely do-able. I still sweat crazy at night and dr says that is from high dose of steroids I am on. Actually we are gonna try to cut back to 12 mg/every 6 hours rather than 16. Today will be day one on 12 mg. I definitely think the swelling is going down and the headaches are nearly non-existent. I am also taking a chemo pill (Temodar) daily and that is huge! Luckily I only have to do it 1 time per day :) The nite sweats are here...I am showering constantly and feel like I smell-which I hate, but no one has said anything so its probably just me being paranoid. The kids seem to be holding up as well as expected. This community is unbelievable for support and I love them dearly. This is not just my illness, the community has embraced it and is helping me fight in so many ways. The support is huge in my fight. The kids are loving the meals, so everyone know that has been a bright spot daily that a good cooked meal is available everynite. (And Dave & I love them too!) It really makes me proud of who Dave & I are as parents and people when even my kids friends are helping out. Kids today get crappy comments and it is important to know that there are still some GREAT kids out there that we can be very proud of. My Dad is driving me to radiation today so that will be fun. I know he so loves feeling like hes helping out and I'm glad he can do it. Other than that I think my agenda is wide open for the day so I'm sure I'll be back on to update as the day progresses.