September 27, 2010

I still haven't gone over to my doctor's office to pick up the blood test results. Wish they'd mail them to me. I got a call from the surgeon's office today and have an appointment on October 21st for consultation. I will be going to the Rome office for that at 3 pm. Guess it will be dark driving home from there just like it was last year. But at least things are getting started. I'll be going out in the winter weather probably for all kinds of tests again and probably won't have the surgery till after new years by the way it seems. They are so busy. I just hope he will do it and that the cancer hasn't spread too far. If it has then he won't do any surgery. No use in it then. But I'm keeping a positive attitude and hoping I will have it done. I am so sick of this pain in my butt and being afraid that I'll mess my pants all the time. The bag will be much better. If I die in surgery then that's okay too. I'm not afraid.
I still have to call the funeral home and get things set up for my cremation. I'm going to have Fenner's do it. I like those people. No funeral services and no memorial services!! Don't want any of that stuff! People can remember me the way they want to.
It's a gloomy, wet day. I did get out at 1 pm to the stores though and got what I needed. I liked the rain falling. It's about 60 degrees here today. The days are getting shorter and the leaves are falling fast. Won't be long before that white stuff starts falling. But I really do like winter if I can watch it from inside.
I'm in contact with my father's son that he had after mom died. Going to give him a few things. Pictures and information. He really wants to know his dad's side of the family. He'll be 46 in October. I wish I had gotten in contact with him years ago. I tried a few years back and did talk to one of his sisters but never got an address. I did tell her to tell him about the family reunion though but he didn't come. Maybe he will next year so he can meet his relatives. He has six kids of his own. One of his sons got killed in an accident two years ago. I'll be meeting him maybe in the next couple weeks to give him some things of dads.
That's all for now. Take care everyone.

September 25, 2010-Watched Jessi Today

I put these special effects frames around these. Jessi was playing with her dolls. She was real good to watch all afternoon. She does ask a lot of questions..Ha!

Nina dropped Jessi off for the afternoon while she and Jordan moved some of the heavy stuff from their house in Frankfort to a storage unit in Mohawk. She hasn't had her closing on the house yet and has to vacate her home in Frankfort because the landlord is moving in. She will be staying with her friend for maybe a week till the closing. The bank is sure taking a long time to finalize everything.
Nina loves her teaching position at the college. The kids love school. Jessi can't wait to go every morning. They've had their school pictures taken already. I will be looking forward to getting those.
I haven't been doing that well this week as far as going to the bathroom. Two whole days again and nothing but bleeding. I have a very slow moving intestinal system I think. Hope I hear from the surgeon soon.
It was too warm Friday. 87 degrees! But now it has cooled down to the 60's and I like it much better. The leaves are falling fast though it seems.
I still have got to get back to my primary doctor in Herkimer to pick up my blood test results. And to drop off a urine sample. I just wasn't feeling up to it on Friday. Maybe Monday. My Cholesterol is still high but my anemia is getting better and the blood count has gone up, thank heavens. That's all they told me over the phone. I'm anxious to see my CEA level that tells if the cancer is spreading.

September 21, 2010-Went To The Dr's

It was a beautiful day today. I felt pretty good going to the doctor's. I hadn't eaten since 3 pm the day before so there wasn't anything to bother my tumor or make me feel like I had to go. I had her give me all the blood tests she could so I could have the reports for my own curiosity. She ordered a CEA test also, which is an indicator that the cancer might be spreading. My blood pressure was 114 over 68 so that was good. I couldn't pee in a cup so had to bring it home. I'll drop that off another day. Dr. Aranda thinks it's a good idea to have the colostomy bag also. I'll let her know when I hear back from Dr. DelPino. I hope he will do it.
After I left the doctor's office I went to Walmart to get some groceries and a few other items. I finally got home and got something to eat around 3 pm. So that was 24 hours that I fasted and I didn't even feel hungry. But as soon as I eat I start feeling pressure in my rectum. I couldn't go of course. Just blood comes out. So now I will be uncomfortable all night. I took three Ducolax at 8:30 pm and hopefully they will work sometime tomorrow. But it's starting to get to the point where they don't even work very good. That's why I really want this colostomy now. I can't deal with this any more. Rather empty a bag than have pain and aching all the time in my rectum. Just hope the cancer hasn't spread so far that he can't do it. But I'm hoping for the best.
Guess I'll go to bed shortly. I'm tired. Take care everyone.

September 20, 2010-Wrote My Letter To Dr.

I finally wrote that letter to Dr. Delpino asking him if he'd give me a permanent colostomy and take that tumor out if it isn't too late. Here I go with more tests again that I hate. Not sure if he will do it because I will still refuse any Chemo. Just have to wait now till I hear from him. He will want me in his office for consultation first.
I have a Dr's appointment tomorrow at 12:45 for blood work. That's for a follow up after the blood transfusion.
At least I went to the bathroom today but all watery. Not feeling that great. That's why I'd rather have a bag. I'm sick of all this ass-end problems. Ha!
That's all I have to report for now.
Jeanne was over on Saturday and Debby stopped by yesterday.

September 16, 2010

This week has not been so great. I couldn't go to the bathroom at all for two days. I doubled up on the laxatives and finally started going yesterday. All day long. And still going this morning but I felt better today than I have for a while. I was happy because I knew I had to get out today and get a few things. I did go out around 1:30. Went to Aubuchon to get my critter food and then to Walmart for a few items. Then I stopped at the Farmer's Market and got some veggies. It was raining but I didn't mind. I like the rain and getting wet is fun. I will probably pay for not taking any laxatives today but I can't when I want to go out. So tonight I will take some and hopefully they will work tomorrow without getting too uncomfortable.
My sister, Pam's father died on Monday. The calling hours are tonight. I won't be going but Jeanne and Jane are. John Zuis and his wife, Betty, adopted Pam when she was two years old. Betty died a few years ago. John was a nice man. Easy going and friendly to all. He was 85. Had a heart attack right in his chair at home after he had been out all day with his sister to go see their brother in the nursing home in Utica. Pam said he was thirsty and cold and asked her to bring him a blanket. When she got back he was gone. She tried CPR while waiting for the ambulance but it didn't work. He has had Congestive Heart failure for a while. Guess it was expected at any time. He was very active. He golfed at least three days a week. I know Pam will miss him. She's been taking care of him and living in the same home she grew up in for a few years now. She bought it from John. It's a good thing. She doesn't need any hassles from the rest of the family.
I saw Pam's son, Gregory when I was pulling in a parking spot at Walmart today. He said his mom had a bad day yesterday but they were preparing for the calling hours tonight and the funeral tomorrow. I guess they are all gathering at the VFW in Herkimer after the funeral.
Steve is still down south with Alysha. She's getting packed and ready to move to NH at the end of the month. Guess she's in the process of selling stuff to get some money. I think Steve will be riding along with her to NH. She is not used to driving anywhere like that. Not sure when Steve will be back here to his house. My brother, Mike, wants him to move to Vermont where he lives. I think he should. He has nothing here and no job. This valley offers nothing for anyone.
I guess all is well with everyone else in the family.
I'm still thinking about what I should do about my situation. I still have to write a letter to the surgeon and see if he thinks it would be a good idea to take my tumor out and give me a permanent colostomy. It sure would be better than having all these bathroom problems. But I'm scared and still thinking about it. I better hurry up before the cancer has spread so far that he can't do it. It already might be too late. I hate going through all those tests again but I'll have to. I will still refuse any chemo or radiation.
Well. That is all for now. Take care everyone.

September 10, 2010-Uncomfortable Day

Those darn Tylenol aren't working very good to take the ache away. I hadn't gone to the bathroom very good yesterday so I took three Ducolax last night and I paid for that today. I was on the toilet all day, which made me ache more. I just can't seem to get myself regulated right. One of these days I will.
I went out to the store last evening and got all my groceries. Felt pretty good and since I wasn't going to the bathroom all day yesterday too well I wasn't worried about crapping my pants..ha! Ha! I never would have been able to go out today. Would have crapped them for sure!
It was real breezy and cloudy most of the day. I saw a small Cooper's Hawk this afternoon and got some good pictures of him. He was flying all around, trying to catch the small birds. He scared my Cockatiel real bad and Ricky went flying and screaming through the house, crashing into the wall on top of the cupboard. One of these days he will break his neck. He was very irritating to me today. Some days he screeches too much and I can't stand the noise. Especially when I'm not feeling well. Hope I never swat him for it. I'd feel bad. When I start getting bad I will probably have my critters put to sleep. No one would want them. I'm still going to try and find my turtle a home though. I'd love to find someone with an indoor pond that would take him. That's what he needs. He can't be outdoors in the winter. He's an African Sideneck that needs to be warm. I feel bad for him. He's such a nice turtle, with a great personality. I keep calling it a "he" but I found out this year it's a "she", since she laid eggs. That was a shock after having her for 15 years.
Well. It's time for me to go to bed. Take care everyone.

September 8, 2010

I'm about back to normal. I'm bleeding lightly like I always did and my butt aches a bit today. The Tylenol does not take care of that like the Ibuprofen did. But I can't take a chance any more on thinning my blood. I quit taking my Magnesium each day also. Right now I'm just taking the B-Complex and Vitamin D and C. Not too sure about the Vit. C. I am taking a couple Ducolax each day or stool softeners to keep from hurting. Last night I was awake every two hours as usual also. Wish I'd sleep at least 6 hours without waking up. But I have never been able to sleep good all my life. Last night there was a thunder storm and around 1:30 am the power went off. The thunder seemed to roll on forever through the valley. Sounded awesome really..ha ha ! I love storms. After the power came back on I never heard any more.
I made an appointment with my primary doctor for Sept. 21st. They told me before I left the hospital to see her for a follow up blood test. I will fast that night also so I can have other tests done. I might have her do an ultrasound on my belly to see if she can see any lumps. I always feel something odd in there.
I'm still debating on whether to call the surgeon in Oneida to get that tumor taken out and have a permanent colostomy done. I know it would give me a better quality of life while the cancer is spreading elsewhere. He will try and talk me into the Chemo afterward but I still don't want that. I'm just at the thinking stage for now.
I'm in bed by 9 pm every night to try and get more sleep. I love this cooler weather. Going to be real cool tomorrow I guess. And rainy. I did want to go out and get a few things but I might wait till Friday when it might be a little sunny. I love the fall!
Saw four foxes this evening. Two pups and two adults. The adults are looking thin though. Wish they'd get more fur on them for the winter.
That's all I have to report for now. Take care everyone. love you all.

September 6, 2010- Feeling Better

I finally slept good for a change! I think I slept 6 hours straight1 I never sleep like that. I feel pretty good but a little shaky this morning. I took two Ducolax laxative pills last night so they are working this morning. I've been on the toilet a lot but at least I'm cleaning myself out of anything that's been in there for the past few days. I almost didn't make it to the toilet once though and did mess my underwear a bit so had to change. That pisses me off. But at least I'm NOT bleeding except for spots like before. Thank heavens for that!!!
I was reading about blood transfusions and am sure glad I hadn't read anything before I went or I probably would have refused that also. I'm adding that article to this. Hope you all have a great Labor Day! Enjoy the last holiday you will get for a while. I'm glad to be home where I can enjoy the outdoor critters for another day here on this earth. there's no place like home! At least while you are alive..ha! God, I hate hospitals. But the nurses were nice and even the cleaning girl gave me a hug when I left. And the little girl that brought the trays at lunch time. I talked to her for quite a while about foods and teas. Taught her a few things. She was sad when she brought my lunch and I said i didn't want any because I was ready to go. She had looked all over and finally found my green tea and she was so proud of herself. She was a young girl. I felt bad then..LOL But she did say she was going to try it. And she was going to stop putting sugar and cream in her herbal teas. She was wondering why they didn't taste that great.. And one of the nurses sat down and just talked about things with me. Every day life things and foods. I think a lot of people need to get educated on the foods they eat. Even that hospital food is crap. They give you juice that's only 15 % real juice. One thing they did bring me for breakfast was plain yogurt and I like that! I put it in my cream of wheat. I wonder what food the other people get all day? Oh well. That's the way it goes.

Take care you all!! Give someone a smile today! Make them feel good, even if it's a stranger.

This is one article I read about blood transfusions:::

Recently, Drs. L. T. Goodnough and J. M. Shuck noted: “The medical community has long been aware that while the blood supply is as safe as we know how to make it, blood transfusion has always carried a risk. The most frequent complication of blood transfusion continues to be non-A, non-B hepatitis (NANBH); other potential complications include hepatitis B, alloimmunization, transfusion reaction, immunologic suppression, and iron overload.” Estimating ‘conservatively’ just one of those serious dangers, the report added: “It is anticipated that approximately 40,000 people [in the United States alone] will develop NANBH yearly and that up to 10% of these will develop cirrhosis and/or hepatoma [liver cancer].”—The American Journal of Surgery, June 1990.

As the risk of contracting disease from transfused blood has become more widely known, people are reconsidering their view of transfusions. For example, after the pope was shot in 1981, he was treated at a hospital and released. Later he had to go back for two months, and his condition was so grave that it seemed he might have to retire as an invalid. Why? He got a cytomegalovirus infection from blood given him. Some may wonder, ‘If blood given even to the pope is unsafe, what about transfusions given to us average people?’

‘But can’t they screen blood for diseases?’ someone might ask. Well, consider as an example screening for hepatitis B. Patient Care (February 28, 1990) pointed out: “The incidence of posttransfusion hepatitis declined following the universal screening of blood for [it], but 5-10% of posttransfusion hepatitis cases are still caused by hepatitis B.”

The fallibility of such testing is also seen with another blood-borne risk—AIDS. The AIDS pandemic has, with a vengeance, awakened people to the danger of infected blood. Granted, there are now tests to screen blood for evidence of the virus. However, blood is not screened in all places, and it seems that people may carry the AIDS virus in their blood for years without its being detectable by current tests. So patients can get AIDS—have got AIDS—from blood that was screened and passed!

Drs. Goodnough and Shuck also mentioned “immunologic suppression.” Yes, evidence mounts that even properly cross-matched blood can damage a patient’s immune system, opening the door to cancer and death. Thus, a Canadian study of “patients with head and neck cancer showed that those who received a blood transfusion during removal of [a] tumor experienced a significant decrease in immune status afterwards.” (The Medical Post, July 10, 1990) Doctors at the University of Southern California had reported: “The recurrence rate for all cancers of the larynx was 14% for those who did not receive blood and 65% for those who did. For cancer of the oral cavity, pharynx, and nose or sinus, the recurrence rate was 31% without transfusions and 71% with transfusions.” (Annals of Otology, Rhinology & Laryngology, March 1989) Suppressed immunity seems also to underlie the fact that those given blood during surgery are more likely to develop infections

Each year in the United States alone, more than 11,000,000 units of red cells are transfused into 3,000,000 patients. In view of that large number, one would assume that there is a strict standard among physicians when it comes to administering blood. Yet, The New England Journal of Medicine notes that there is surprisingly little data “to guide decisions about transfusions.” Indeed, there is a wide variation in practice, not only regarding precisely what is transfused and how much but also regarding whether a transfusion is administered at all. “Transfusion depends on the doctor, not on the patient,” says the medical journal Acta Anæsthesiologica Belgica. Considering the above, it is hardly surprising that a study published in The New England Journal of Medicine found that “an estimated 66 percent of transfusions are administered inappropriately.”


Those are minimal dangers to worry about, the biggest worry is reacting to the anti-bodies in the blood you are getting. That can cause instant death.

September 5, 2010-I'm Home

What an ordeal! Friday evening I started gushing so much blood that I thought I'd bleed to death right here. So I called the ER at St. Lukes. They advised me to call my doctor so I called the office, knowing full well I'd never get hold of my primary DR. I called and they had a Dr. DeJesus call me back. He said to get to the ER right away with that much blood loss so I called the ambulance around 9:30 or 9:45 that night. (Friday) I told the ambulance drivers not to have the lights or sirens on. I met them outside with my overnight bag ready. Got to the Er and I laid there in the damn hallway for a while and then they put me in a little room right there. I was downstairs in that ER for 15 hours before they finally admitted me Saturday afternoon at 1:30. Never had anything to eat but of course didn't want to. I had to ask for water and got it once during those 15 hours. One of the doctors on duty came in to talk to me at 3 am. Can't remember his name. He told me what I already knew. That nothing can stop a cancer tumor from bleeding once it starts. It's useless to give blood transfusions too. He was only there for a second then another Dr. talked to me around 9 am that morning. He explained everything and said they would give me four units of blood and keep me on the Sodium Chloride drip because my blood pressure was way too low. Like 68 over 48 at one time. I told them not to waste the blood and then I settled for two units and resigned myself to the fact I'd have to spend Sat. night there. Each unit takes a few hours to be transfused. They started the blood about the same time they took me up to my room. They wanted to keep me there all weekend and then give me a Cat Scan to see where the bleeding was coming from. I told them where it was coming from but they didn't want to listen to me. And I also told them that I thought it was my fault by doing that baking soda enema the night before. I made it too strong and I think the baking soda burned the tissue. But they won't listen to little old me..Ha! Ha! The doctor did say the only way to stop that kind of bleeding was to take the tumor out but that wasn't always a guarantee either because it might have spread too far into my organs. I told him I'd worry about that when the time came.
I never slept until around 11:30 Saturday night after they took their last blood pressure check. 24 hours with no sleep just in the hospital! When I was getting the blood they had to come in every half hour. But I was done with the blood by 9:30 Sat. night. I did sleep for a few hours. At 4 am a girl came in to take a vial of blood. They have to wait 8 hours after the transfusion to see how the count is. I never did find out what it was. But I had lost about a quart of blood that whole day Friday. It was pouring out of so much that it even scared me! And I don't scare too easy but I knew it was making me very weak and that I was getting anemic again and might faint here and just die. That's why I decided to take an ambulance. I gushed a lot of blood at 5 am Sat morning and then it slowly subsided all day and all last night. I did have maybe two tablespoons and a few clots come out this morning but I did not tell anyone. I wanted to leave. I was on a strict liquid diet also and I might try to stay on it for a couple more days. I don't want to irritate that tumor so soon. Not taking any chances.
When they started the blood transfusions they gave me two Tylenol and a shot of Benadryl right into the IV line. Man, did that sting for a while till the Sodium Chloride solution finally flushed it. They said that was for inflamation in case the blood caused it. And if that blood had any allergic problems I could end up with them..Yikes! But so far no problems. Time will tell.
I kept asking the nurse this morning if that doctor was at the hospital and she kept saying yes. I said just make sure I see him. So in comes this different doctor that said the other one wasn't there and he was covering for him. I told him I wanted to be released and he had no problem with it. So now I'm home but still bleeding some and will watch myself. If it continues to get worse again then I will call the surgeon from Oneida that knows my case and ask him what to do. I sure didn't want one of those Dr's at St. Lukes doing it. I like Dr. DelPino and he takes the time to explain every detail. He was the one that was going to do my resection if I had gone through all the radiation treatments. he did tell me that he'd operate without it if I chose that way. Now if he can take that tumor out and give a permanent bag then I might have to do it. The cancer will probably spread like wildfire but it's going to anyway. All the doctors keep telling me that cancer does not spread by opening you up and it's never been proven. But I still believe it. It's going to spread one way or another anyway.
So that's where I'm at right now. pondering on what to do. I have to lie down because I am bleeding a little more now.
Take care everyone and thanks for all your thoughts and prayers. I'll keep you posted if things start going bad again. Love you all.
PS
My Cockatiel was so happy to see me that he got on my shoulder and wouldn't stop chattering to me and giving me hugs. So cute. Ha!

Update from earlier post-Sept. 3, 2010

I have been lying down all afternoon to keep the pressure off. I'm not gushing blood but still bleeding. I am not going to call an ambulance. I don't think there is anything they can do for this and it's a holiday weekend. But if I think I'm dying, I might...ha ha !
I really think I might have cause this by giving myself a baking soda enema last night. I don't do them on a regular basis like I used to before I broke my wrist. I think it was helping back then. It's supposed to shrink the tumor. Maybe I had it too strong. Not sure. And I better quit eating nuts etc. Any roughage can cause that tumor to bleed. So for now I'm just going to take it easy and lie down as much as I can tonight. There's too much pressure when I'm sitting. Got to get off this chair now. I'll keep you posted.
Hope you all have a nice weekend. Love you all.

September 3, 2010-Not A Good Day

For the first time in a year I am gushing blood. It's really scary. So much blood coming out of me. I was cleaning up the toilet and just got it all clean when another big gush came out. Had to clean all over again. It's a good thing I was near the toilet. There's no stopping it when it wants to come. I'm a little scared that I might have to call an ambulance today. But I will wait and see how many times this will happen. At the moment it has subsided enough for me to write this.
I have had some weird throbbing pains in my left chest for the past two days but that has subsided also.
Right now I can feel the blood coming again so have to go. God, I hope it stops.

September 1, 2010

Trying to catch up with these blogs. My brother, Steve, stayed down in NC for a while with his family. My sister, Jane, brother, Mike and nephew, Gavin all got back late Saturday night. Mike got in his vehicle and continued to drive a few more hours to Vermont. He didn't want to stay overnight. He just wanted to get home where he could relax. I don't blame him. Jane said they never got much sleep while they were down there. She said they had a real nice memorial service for Patty. I added her obituary to the last post. Patty had left letters for everyone and Alysha read some privately to some and publicly to others. At least patty thought of that! Alysha has Patty's car now so she can get out of there and go to NH when she is ready. I hope my brother will be okay after all this. He did real well and didn't drink at all, even though the others were.
I made slide shows of some old pics I had of Patty and Steve. I put them on Facebook for the girls. Someday if I get more pics I will make a nice one for Steve and Alysha to have on a DVD.

My daughter and the kids were over to see me on Sunday. It was nice to see them all together. I haven't seen Jordan in a while. Can't believe how big he's getting! Not sure if I like him growing his hair out into a 'Fro" though..Ha! Ha!
It's real hot here this week. Going past 90 degrees today. I went out early this morning to do some grocery shopping and get some critter food. Thank heavens my car ran okay. The last time I went out it stalled on me at the light but started back up. Heard some funny noises in it too. but today I didn't notice any. I'm so thankful for that!!
I've been bleeding a lot more lately and still having problems going to the bathroom. When I ache I take my Ibuprofen. It takes the ache away anyway. Other than that I feel okay. Just hope I don't get anemic from losing blood like I did last year. I've gained almost 20 pounds back!! That's because I'm eating everything. I hate being thin. Makes me look so frail and older. Ha!
I'm not seeing my foxes much these days. And I missed a great photo opportunity with the fawn the other day. The lady down the hall said it was right outside her window and then went my way. Darn it! I was on the phone and wasn't looking. I haven't seen the fawns since a month ago when I saw two of them with their mother on the back hill. Hope one didn't get killed. They only seem to see one.
My hand still aches and hurts at times be I'm resigned to the fact that it will always be that way. That is the least of my worries.
So that's about it. Can't think of anything else to say at the moment. Take care everyone.