Changes

Last week I began having some real problems with breathlessness to a new extent. I went for lung rehab on Wednesday and they sent me home. Not only was I having distress trying to breathe (even on oxygen) but they said my color was off and my lung breath sounds were not good. I came home and called my doctor, who was on vacation. Spoke to covering doctor who called the respiratory therapist at the rehab and decided I needed home oxygen (something she had been saying for over a week.) Late Thursday night I took delivery of a huge (R2D2 type) tank with liquid oxygen and a portable unit which can be filled from the larger unit. I had such mixed feelings but I was in no position to refuse it. I still use my other machine for sleeping. On Thursday morning I went for my CT scan. It was originally scheduled for Tuesday but the machine broke. I had the same problem as last time, I simply cannot lay flat on my back and breathe normally. I am gasping for air yet trying to hold my breath for three intervals of a minute each. Talk about torture. The CT scan showed some more problems which I won't go into except to say that the pleural effusion is now larger. This may be causing all the lung distress but you cannot know for sure as other things were observed as well.

At this point, I was given some information about post radiation lung disorders. After doing extensive research it certainly seems a possiblity this is what has been happening to my lungs. I am eager to discuss this with my lung doctor and she is supposed to call me this afternoon and meet with me on Thursday morning. I don't want to speculate at this point and I am not qualified to do so but I am certainly concerned. I was to return to work May 1. I don't see how that would be possible, but that decision is the doctor's not mine. I do know that I would need a lot of arrangements made in order to do that. I work a stressful job where there is no time for breaks other than the scheduled half hour lunch and two fifteen minute breaks.

I haven't been online too much. My son continues to have intestinal issues and I am greatly concerned about him. He was hospitalized eight weeks ago for several days and has been to the ER twice since then. He did come over yesterday and we managed to have an Easter dinner with my husband doing most of the work. My mother and sister also joined us. It didn't feel like a holiday of any kind. Even with the oxygen when I try to do physical things I have problems. I am tethered to lines and have to get to the main tank to change the setting if I am moving about or sitting. I certainly hope that this is going to be for a short time.

Sunny Sunday

Yesterday the weather was damp and cold then we had torrential rain, lightning and thunder. It woke me throughout the night. I have not been feeling well the past few days. I think that a lot of people come to lung rehab when they are still sick. I have become very attentive to using disinfecting wipes on nearly everything I touch there. One woman is particularly dirty. Her clothes desperately need washing, her personal hygiene is terrible and the people who work there are distressed about it. They are helping her but have gently made comments which are ignored. I have never had to be in such close proximity to someone like this before. I am always the one who feels sorry for people. This woman owns her own home and can do laundry. I have to keep a certain distance from her because I start to feel sick from the odor. She worked until last year and I cannot believe that she went to work like this. She is not as breathless as many of us. She moves around easily and can be on the treadmill with no real problem. Last night I began to ache all over. It was so damp that my sternum was aching. Not surprising since it has so much wire in it, but it's not a problem I have had like this before. I couldn't find a position to sleep in that was not painful. Hopefully tonight will be better. If not I will take something for the pain. I miss my father terribly. Easter is coming. He loved holidays and celebrations. I have invited my mother and sister to come here for dinner. I think having dinner there would be harder. I can't believe he has been gone for two months now. My mother is doing okay. Better than I had expected,but still has some really bad days. She has people wanting to visit her, or inviting her but says she only wants to spend time with her family right now. I think she just wants to be with other people feeling the loss. So we are spending more time together than usual and that's been good. IF my CT scan is good on Tuesday, I will probably be going back to work May 1st. We'll see. I won't get the results until ten days later at my doctor's appointment.

Brought to you by the letter U

I really like having a laptop. It's just so much more convenient to be able to use it wherever I choose. With two pets (especially a cat) I find that it gets very dusty and for several days I lost my letter U. Since that letter is in my last name and used frequently it was really a pain to have to hit it several times or go back and add it because it was missing later. I am not supposed to use any cleaners of any kind, particularly inhalants. I had to wait until Rob had time to do this for me. It took about three days. I mean the guy does work full time and then has to do a lot of things around the house I can no longer do. It's frustrating for me to have to wait and ask people for help. I would so much rather be doing things myself. I remember seeing people with oxygen tanks and never thinking of what their lives were like. It's just so inconvenient and frustrating to find myself walking ten feet and feeling a tightness in my chest and realizing I am already out of breath.

We went to Applebees last night. I had hoped to go to Kohl's afterwards but I had rehab yesterday and I was so tired that we had to come home. I did have a great dinner salad. It looks like the sun is finally back. If the temperatures warm up I think my lungs will be better. The dampness and cold have been a real problem.

Is anyone besides me watching American Idol? My neighbor Stacey does and we discuss it the following day. She is always offering to drive me places and help me. I don't take her up on it but just her offering means so much. I am truly blessed with good neighbors here. Time for breakfast. Wishing you a bright and sunshiney day.

Pressing Onward

I think one of the hardest things to do in life is to being working hard, not seeing much in the way of results but still pushing onward towards the goal. In rehab I am not seeing results. They have tried repeatedly to put me on a treadmill and when they do I lose my breath quickly. Mind you, I am wearing oxygen when this is happening. I can't go more than three minutes without struggling and watching my oxygen plummet. I can't tell you how frustrating this feels. All the breathing excercises and other things seem to have no effect on this. Even the pulmonary therapist tells me she is perplexed. She is suggesting I get a second opinion from someone who is prominent in the field. I am having another CT scan next Tuesday and if that doesn't show something then I will try to set that up. She also feels that I need oxygen for home and probably have needed it for months. The doctor asked me but I said no, thinking that I would be okay without it. I also declined her suggestions that I get a scooter for when I need to do any walking. I guess a lot of it is my age, but I cannot accept, at least now, that this will not get better. I just keep thinking they will find the problem and fix it. The eternal optomist. Now for something completely different................ Does anyone else have problems with people calling during their routine dinner time? Mind you, when I am working I am rarely home before 6:30 and people know I am just coming in the door then and rarely call. Now that I have been home a few months, I am finding anywhere from three to ten people call at that time which is 5-6 p.m. I have answered the phone and told them that I am either preparing or eating dinner and will have to call them back. The same people will call again during that time. The obvious solution is not to answer the phone during that hour. When my Dad was sick I was always afraid not to answer the phone because something cold have happened. Now my mother is alone and I worry about her. Also, my son has been sick twice recently. He was back in the emergency room all Saturday night. He got a stomach virus and dehydrated. When he gets sick, his anxiety is bad and he fears that he might be relapsing. I offer for him to come stay here but he knows that my immune system is weak and refuses to subject me to his germs. We do a lot of talking on the phone during that time. Today I am trying to put through a real estate referral. I have to take my sunglasses back to have another prescription put in them. I need to get to the grocery store for a few items. Lots of small things. It is supposed to be raining hard later so I want to get them done early.

Weather Chaos

Yesterday I had to pick up my car which I had detailed. (I have a family member who does that and get a good deal.) My mother came to pick me up and the weather bug told me it was 62 degrees and it was clear outside. Deciding to welcome spring, I threw on a long sleeved T shirt, jeans and wore flip flops since we were going for a mani/pedi before picking up the car. We found a place that does both on Mon., Tues., or Wed. for $30. In this area that is cheap. By the time we arrive at the nail salon it has cooled off significantly and now is a bit windy. While we are in there heavy rain comes in and before we know it the temperature had dropped 20 degrees! We popped into Dunkin Donuts next door for some warm coffee while waiting for the rain to let up a bit. We got to the garage and noone was there. We went to my mother's and I left a cell phone message to please contact me when they returned from lunch. By the time I got out of the car to pick up mine I had to crank the heat up. My feet were freezing and so were my arms. I made it home but the chill had really taken me over and all night I felt cold. My car looks really good. It's a few years old now and I try to keep a good coat of wax on it. There had also been some mold on a door jam and they removed that. Rob and I went out to get a nephew a birthday gift and pick up a few grocery items. From running in and out of places and having been put through a work out the day before, I am really achey. Hoping I can make it through my entire regimen today. Of course, the breathing is the most important part but they want all my muscles worked out. I think I will take Advil half an hour before I get worked out. I think muscles that haven't been used in two years are being excercised. It's a good thing but no pain no gain I guess. Maybe I can lose a few inches in the process.

Time or the Lack Thereof

On mornings such as today there just doesn't seem to be enough time to do all I want. I go to the rehab facility three times a week. While it is about twenty-five miles away most ways I went in the past, I was able to find a zig zag shortcut. I am now getting there in about 35 minutes by shaving off some miles. In order to take the shortcut I have to drive on a highway that is filled with trucks. They cut you off and I am not used to that. I have to be very attentive to the vehicles around me. Still, it is worth the time saved. I leave here about twelve thirty and don't return until about four. At that time I am frantically searching for something for dinner. At five Rob arrives home looking for conversation and something good to eat. You would think that I had plenty of time to get organized before leaving at twelve thirty but what happens is I make coffee, read emails, get a few phone calls, make the bed, and decide what to wear for the day. Since most of my clothes I wear when not working are jeans it's been a problem for me to find clothes I can excercise in. I did find a few things and I only have one pair of shoes that can be used. It's still winter or I would have many other things I could wear. Well, it's Spring pretending to still be winter I think. Today I will stop by my mother's and pick up some peppers and make stuffed peppers for dinner which I will then share with her. She doesn't want to cook but she enjoys a nice dinner so I am trying to see that she has that. My aunt feels I should force her to come here for dinner as opposed to delivering it. I just can't make demands on her at this time. When I see her instead of the mother who frustrated me so much of my life, I see a frail woman struggling to make it alone. I worry now that at 79 I won't have her much longer. If you would have told me in my twenties I would ever feel this way I wouldn't have believed it. When you lose a parent you have spent so much time with it changes many things. I enjoy talking to my siblings now because they understand. Their experience is different than mine but we share a loss. A few friends shared memories of my father with me and that helped to. We all have different experiences losing a parent, just as we all have different relationships with our parents. Still, I find that people who have not lost a parent can be so insensitive. Today is the funeral for the young mother. The funeral is at 11:30 and my Mom was not up to going. I was already scheduled for my rehab and if I don't go I would have to pay for the session out of pocket. I know there will be a lot of people as she was an elementary school teacher. My thoughts are there with her and her family. I cannot imagine her young husband, married two years and left with a week old newborn son. I know her family doesn't live far from them and I'm sure they are only too happy to help. They are a close and loving family. Well, time to answer emails and get start getting ready. I have to keep myself busy right now. Have a good week.

Rehab

I have had three visits to the pulmonary rehab facility. It has been an eye opener in many ways. On the first day they realized that I cannot do any exercise (even walking longer than 4 minutes) without oxygen. If I don't have oxygen, my oxygen level drops below 90 which is not good. It explains a lot of why I have struggled, especially the last year. They call what happens to me "DEsat" meaning your oxygen level has desaturated. I am now working on a machine, doing muscle strengthening exercises and breathing exercises but all while wearing oxygen. Depending on how much my lungs improve, they are thinking I may need to have home oxygen for times when I must ex cert myself. Although I had told my lung doctor about this, it is now documented by machines that measure the activities. I am slowly getting in better shape I think. My muscles had not been used because of the breathlessness. I am hoping to push myself enough to get better use of the lungs. They monitor me and stop me when it's necessary. When you lose your oxygen it makes your heart work a lot harder and your blood pressure rises. This is when I have to stop. My mother had been doing pretty good until yesterday. Yesterday she had to go for a mammogram (if you remember her mother died a year and a half ago from breast cancer.) She was so anxiety ridden then on the way home she passed the cemetery where Dad is, it was raining and dismal and she lost it. She became physically sick. We tried to take her out to dinner but she refused. We brought her home a dinner (crab cakes, potatoes, veggies etc.) but she took a few bites and said she didn't feel well. I offered to spend the night but she refused saying she didn't want me to get sick. She was really upset and I felt horrible leaving her there alone but she insisted. A twenty-nine year old young lady from her church gave birth to her first child a week ago. On Thursday they found the new mother was very ill and rushed her into intensive care after they diagnosed an infection. The mother passed away less than twenty-four hours later. My mother has been friends with her mother for many years and just saw them at my father's funeral. It is such a tragedy. This week old baby boy lost his mother and will never even have memories of her. It has hit us all hard. The funeral will probably be next week, we are still waiting for details and not wanting to bother the family with a phone call. My mother called and asked me if I would go out with her to lunch. I guess she is ready for a change of scenery, perhaps briefly. I am excited that she is willing to leave her house. She hasn't done that much. Life goes on when you lose someone you love...it truly does....but it's never the same.

New Dishwasher

This morning I had a new dishwasher installed. It must sound sad how excited I am over it. My old dishwasher was in the house when we bought it. It only had an on/off switch, it was very noisy and had no boost for water temperatures that were not hot enough. My doctors had asked me if used a dishwasher than sanitized and suggested I get one that did. I try to make use of working things and am reluctant to replace an appliance that still works but when the water was not entering for the rinse I knew it was time. At the time we began to search I found a strong recommendation from Consumer Reports and it was 20% off and then I had a coupon for another 10%. It had all the things I wanted and was highly rated so this last week we ordered it. Now I have to get used to loading and unloading a very different set of racks but I am overjoyed to know that my dishes will be sanitized. Tomorrow I start my lung rehabilitation. I am nervous but excited at an opportunity to improve my breathing. I suspect the pleurasy is still an issue but I won't get another CT scan for a few weeks and that's when they'll know for certain. I found out my insurance covers me for 20 visits only. I am also on my husband's insurance and if I need more visits after that I can use his. Even with insurance it will be costly for us but it is necessary. I am happy for the opportunity after two years of struggling. Yesterday Rob and I had the most delightful brunch. We saw a very small place and stopped when we saw the brunch sign. It was wonderful. They allow you to bring your own wine (no we didn't have wine with us.) I had an individual quiche and salad with their own calamatta olive/artichoke dressing and it was delish. Rob had some scrambled eggs with steak and swiss cheese in them, sourdough toast and some roasted potatoes that he loved. It was reasonable too. Afterwards we stopped at my mother's where my sister was staying for the weekend. The weekend went by fast, they always do. I don't like it when Rob goes to work Mondays. Although I enjoy some occasional solitude, it's different when you aren't feeling well. It's comforting to have someone here. I'll let you know how the lung rehabilitation goes....wish me luck.

Looks Like I am Rehab Bound....no not that kind....

Last Thursday, in addition to my fabulous St. Paddy's Day meal and minor celebration, I paid a visit to my lung doctor. She could hear wheezing in my lung yet and my pulse ox was lower than usual. She decided two things: one, that I was not ready to return to work and picked May 1 as the new day to shoot for and also that I would benefit from Pulmonary Rehab. That is done as an outpatient about three times a week. The difficult will be the traveling to and fro. The drive is an hour each way for me. I will be put on various machines for about an hour and a half each day. A part of me is not looking forward to this but then the other part of me understands that I should not have to continue on with these chronic breathing problems if there is anything that might help me. I am waiting for my insurance company to approve it. (While fighting with them to pay the last bill from the radiology facility I use.) So, I am guardedly hopeful that this may help me and there will be a day in the future where I can shop somewhere there is not a cart for me to push to make it easier to breathe. I am just too young to be doing that and even the "seniors" are making comments to me.
Last Friday my son got sick again. He gets very stressed out over things like the hospital bill he owes for his last stay in February. What a sin that if you have been prudent enough to save that money will keep you from receiving any assistance while had you not done that you would probably owe nothing, but who could take that chance? He is trying to be responsible and pay his own way but finding it frustrating that with all the charity handed out to people who are not citizens (or may have never paid taxes) that he will have to pay for a long time. This country should be taking care of it's own's medical issues before helping others. OK, that's MY opinion but his father and I have worked hard and paid taxes for years (as has he much of the time.)
Yesterday I woke up feeling under the weather myself and realized I have some sort of bug. I've had a headache, aches and pains and some intestinal issues.
Better today and hoping to be A OK tomorrow. That's about all for now.

Irish Soda Bread

Terry asked that I post the receipe for Irish soda bread. I have tried many different recipes and this one came from an actual Irish paper or magazine. It is my favorite and the only one I make now. Mind you, you need buttermilk for it. Also, there is baking powder AND baking soda. The powder gets added to the flour mix but the baking soda gets mixed with the liquids.

4 cups sifted flour (all purpose)
1/4 c sugar
1 tsp salt
1 tsp bakign powder
2 Tbsps caraway seeds
1/4 c butter or margarine
2 C raisins
1 1/3 c buttermilk
1 egg
1 tsp. baking soda
1 egg yolk, beaten

Sift flour, sugar, salt and baking powder into mixing bowl; stire in caraway seeds. Cut in butter until mixture looks like coarse meal; stir in raisins.
Combine buttermilk, 1 egg and baking soda; stir into flour mixture just enough to moisten dry ingredients.
Turn onto floured board and knead lightly until dough is smooth. Shape into a ball and place in a greased 2 quart casserole. With a sharp knife, cut a cross about 4 inches across and 1/2 inches deep in center of dough. Brush with egg yolk.
Bake in a moderate 375 degree oven about one hour or until an inserted cake tester or wooden pick comes out clean.
Cool bread in casserole 10 mins. then remove. Cool on wire rack before cutting. To serve, cut down through loaf to divide it into quarters; thinly slice each quarter. Makes 1 loaf.

I should have taken a picture of mine before cutting it but my mother had just come in, it was warm and I quickly cut it so she could have some. I have several family members who cannot have the caraway seeds so for theirs I leave them out. I make sure the raisins are fresh, if not I soak them for a bit first.

And if any of you are interested in a gluten free recipe found this one:
http://www.mnn.com/food/recipes/blogs/recipe-gluten-free-irish-soda-bread

Cough Chat

Yesterday was a really cold day. It is very rare that I stay in my pajamas all day but I did yesterday. It was depressing and as the day moved along I began to cough again. Last night I woke up coughing and wheezing. That pesky left lung has a middle lobe that loves to wheeze. Last CT scan showed what the doctor believes to be a "mucus plug" in it. I am now coughing a lot and starting to feel nervous. My shortness of breath is worse too. I am either getting a really bad cold (which can lead to pneumonia) or some other respiratory ailment. I have an appointment with the lung doctor on Thursday. I also need another CT scan to see if the pleural effusion has cleared up or at least significantly improved. I have had this several times before and by the time I finished the antibiotics it had cleared. This seems to be more stubborn.

I dropped off my papers for the accountant to do my taxes. With the disability payments and medical deductions I wouldn't even consider trying to do it. The last time I tried I made a mistake and he had to straighten it out for me. I stopped by the grocery store and got a corned beef brisket and cabbage to make for Thursday. I will also bake the Irish soda bread which Rob and I love. We have this traditional meal each year and when I am home to make it, so much the better. I have my doctor's appointment at 9 a.m. so I will be home in plenty of time to make everything.

I went by the cemetery this morning. A few rows over there had been another funeral. My mother is not ready to order the stone although she knows what she wants. She is giving Rob and I the graves next to theirs. We already have a stone there facing the other way so we will have to have "our side" carved with what we want. I want a ribbon like banner and Rob wants Celtic style lettering.
Yes, I know it's premature to be thinking of this but I do want to know it will have what I want. There has been much discussion in my family over who the favorite child is and I told Rob under my name to put "favorite child". That would be hysterical. Of course, he wouldn't really do it. I will have to settle for something else such the nickname my grandmother and uncles called me "princess". Ironically, it wasn't meant to be a compliment but more of a joke, because I was like the princess in the story "The Princess and the Pea". If I got sand on my feet they needed to be rinsed immediately. Since several years of my life were spent on the shore of the Chesapeake Bay you can imagine what a nuisance that was. My grandmother gave me sneakers to wear on my feet both in and out of the water to keep the sand off of my feet. The woman could outsmart any child and we loved her for it. I don't know if I mentioned but my cousin's daughters put together a cook book they had made with pictures and recipes of my grandmother's. What a wonderful Christmas present that was! My grandmother always had blue willow dishes and the book is white with blue art. It's amazing. Everyone I show it to is so impressed at the job that Christie and Jenny did. My aunt had one made for my mother, sister and I in hardcover and some smaller softcover ones made for my brother's wives. I am thinking of making one about my Dad for my mother and siblings for Christmas. We have so many pictures of him. I would need to type up some stories. I have plenty.
Well, time to grab some lunch and run something over to my Mom's. I try to see her for a time each day. There is so much still to do but yesterday Dad's clothes were given away (except of course for his shoes.)

Monday Musings

I had a really nice weekend (except for the sleepless night on Saturday.) My sister came early Saturday morning. She had a few hours with my mother (I always try to allow them sometime without me there) then they called me asking me to go out with them. We went to the Dollar Store and got our bargains. I got a lot of cards there. Afterwards we retried what had once been our favorite diner. In the New York area diners are a bit different than elsewhere. You can get some fabulous dinners. In New York state some diners even serve liquor. This diner had changed hands a few times and the last time I was there it left a lot to be desired. They had remodeled and we had a very nice dinner. I had crab cakes which were all crab, almost no filler and my sister had the sole stuffed with crab meat. Our portions were large and there was no room for the included dessert so we got rice pudding to go. We went back to my mother's and worked with her on a jigsaw puzzle. She always enjoyed them and now has several new ones. For the most part she is doing well, although she has some bad moments. I was spending every waking moment there but slowly am trying to get her used to having some time on her own as I am slated to return to work April 1st. That will be hard for her. We have done a lot and today she was dropping off the last of Dad's clothes to be donated to a bowery mission in New York. Seeing the clothes in the bags was really hard for me. I know they will be put to good use. He had visited the mission with his minister once or twice. Every now and then I almost pinch myself and ask "Can he really be gone?" It puzzles me how I can do that after attending his funeral and visiting his grave half a dozen times already. I guess it's all part of the grieving process. When I was out of work five years ago my Dad would just show up at my door. It was usually around lunch time and he would ask "What's for lunch?" At times I was busy doing other things and I would kind of sigh. Now I would give anything to have him throw open my front door and have lunch with me again. The last two years there was a rare time you could have a give and take converstation. He had aphasia then just gave up talking except for simple words like yes and no. If he got irritated he would let you know with shocking entire phrases or sentences like "Leave me alone" or "Go away". If you were lucky you got a smile from time to time and that made my day. We lost him slowly over time and then at the end, it was like we lost him twice.

My sister brought Office 2007 for students with her. I have been wanting it for a long time. Now I finally have a word program in the laptop. I also was able to convert my old word files. I have an excel spreadsheet with names and addresses that I used for Christmas cards. I have to try to figure out how to do that in this version. It gives me something to do. I had also done two journals (favorite poetry and favorite receipes) that are in a Corel program. Can't seem to get them open now. I would like to have them put into word.

It's chilly today. Overcast but no rain predicted. I am going to stay home today. Just take some time and watch an old movie. No doubt my neighbor Stacey will come over at some point. She has been wonderful with her caring and support.
They wanted to take us to a concert but we declined. I don't want to leave my mother for hours yet. It's a lot what she has and continues to go through. It has changed her and made her more emotional in a positive way. Life goes on but I think these experiences change us all. Now when I know someone has lost a parent I will reach out to them and let them know that I understand.

Life Goes On

I have spent so much time thinking about friendship and making many observations. I have found that the friends who tell that they love you, promise to be there for you always etc. are the ones who let you down. My other friends who never made promises were the ones who were here for me. In fact, one cried when hearing a phone message from someone who always said they were my best friend. I have discovered that these people when presented with the truth try to turn it around and blame me. I tried to hang on to friends I had a history with but the truth is time passes and people change. I don't make promises to friends but when they need me I do my best to be there. Is expecting to be treated the way you treat others too much to ask? I don't think so.

My Mom has had a few really bad days. I have had to go there and give her sick dog medicine that she can't get her to take. I wrote some thank you cards today for her and made lists for her. Every single thing is a reminder of a person who is no longer there. She has also had two close friends who have not called or visited and I know that is bothering her as they were both widowed in the past few years. They came to her house all the time then and she was there for them.
I remember one friend who just came sat and cried.

My one friend talked to me yesterday and told me that she cannot allow people to get too close to her anymore. She was hurt too badly and just couldn't put herself out there again. A part of me feels that way. The other part knows that there are genuine people out there, some who have touched me in a way I won't forget. I do know this has taught me that I will never underestimate the power of a sympathy card. Each one I received was cherished. It's not a hard thing to do but it means so much to someone when they are grieving.

Lent started this week. For lent I am giving up friends who profess to love me but whose actions say something entire differently. No relationship is 100% bad and of course I got some good from them but I need much healthier relationships.

The Good and the Bad

My cousin and her Mom were here for two glorious days. It was wonderful to have their company. They spoiled us by taking us out for every meal. The whole time we have had company this was the first time there was no food prep or dirty dishes, save the lunch I made them when they arrived. Because they have been through this, they understood and shared a lot. Sometimes just being understood is worth it's weight in gold. I stayed at my mother's, with my cousin, so I had two days without animals to worry about. When I arrived home I was shocked to hear a phone message that had been left. A friend was angry that I had not called her back in the past two weeks. (I had called her the day my Dad died and that was exactly two weeks earlier.) Truth be told, I had attempted to call her and if she had checked her caller id she would have seen that. I did not leave messages. She only has a cell phone, no house phone and reaching her is not always easy. She went on to say not to bother sending her cards (I had sent her a St. Patrick's Day card) as we "never talk." I cannot tell you how upsetting this was. Firstly, my father had died two weeks to the day yesterday. In that short time I have spent countless hours calling social, security, their utilities, etc. to have things changed into her name. Some require copies of the death certificate. People are constantly dropping by my mother's house, bringing productivity to a standstill. My mother is not fully functioning right now. I prepped her house for company, changed bed linens and fielded what phone calls I could. Should I have to explain this to someone? I think not. While all this has gone on, I have also continued to deal with my health issues and see doctors and make sure meds are filled and taken. Anything I do at my mother's is with me struggling for breath. My mother's house has been a constant delivery point. My brothers friends have sent floral, and fruit arrangements and the food deliveries still continue. I am astonished at how much support their friends and their families have given and how generous they have been. Some of my brother's friends have actually called me to see how I was doing. My neighbor, Stacey, was at the funeral and has called and or visited me each day since then. If I am not around, she leaves a message just to let me know I am in her thoughts. Yesterday when she called I was crying about the phone message and she cried with me. The friends you think will be there for you sometimes cannot be. Maybe they choose not to be. I have learned once again that I can only truly count on myself. I'm a strong person who has survived cancer several times, heart surgery and five bouts of pneumonia in twenty months. I will survive this too. It would just be easier with some genuine caring and support.

New Post

Friends:
I wrote a lengthy post in my confidential journal (private version) which I meant to put in here. I cannot cut and paste it or move it over. IF you do not have the link or wish to have your email address added so that you can access it, let me know. I think most of you are on that list anyway.
Sorry for the inconvenience.

My Father's Passing

On Feb. 22nd my father entered eternal rest. It was a gentle passing and my hopes and prayers were answered as it was in his sleep and as my mother slept nearby and never heard anything we know it was not traumatic. She awoke at 4 a.m. and he was already gone. She called the hospice nurse to come and then my brother and I went there and and saw him before the funeral home came.

Later we went and made the arrangements and on Thursday, Feb. 24th it was just one service: an hour viewing followed by a funeral service. He looked so wonderful. His coloring was perfect and he was buried with a gold and diamond tietack I had bought him. It was his and I insisted. We left the funeral in a short procession to the cemetery. The state police escorted us (my nephew is a state trooper and his friends volunteered their off duty time.) When we arrived there were two Navy officers. I am posted a picture or of that. They played Taps and presented Mom with his casket flag. Rob took out his phone and snapped a few pictures which turned out beautifully (at Mom's request.)

My mother is doing better than any of us expected. I have been spending most of my time at her house helping. Her sister and niece stayed there all last week and then my sister came from upstate NY and later my brother and his wife. It was chaotic with us five kids and spouses but it all worked out. We were the recipients of constant food and floral deliveries and there was an abundance like I have never seen. Mom had a catered luncheon back at the church after the cemetery and we had those leftovers too! At least a dozen people bought food and some paid a restaurant to deliver cooked food.

I must say this: I am so saddened by the lack of acknowledgement of my coworkers that I have worked with for 3 1/2 years. I cannot focus on that but it has made me realize at a time such as this how just a simple email saying I care or a card means so very much.

I have letters to write and much to do but I wanted to post this and let you all know. I will be out of work until April 1st now. I still have plural effusion (fluid surrounding my lungs) and it causes me difficulty in breathing. I have been running a low grade temp as well. Hoping that will clear up.

OH! The day of my Dad's funeral my son who had been ill for several days went to the ER and collapsed. They admitted him and he was inpatient for three days. He had a bad stomach virus and had to be in isolation. He came home Saturday. He has his own apartment, he doesn't live with me and I couldn't be around him. Rob did go take him magazines and visit with him.

My phone is starting to ring a lot....I have lots to do. Life goes on and I am taking it one day at a time.

UPDATE on previous post

Have been taking my medicine at the much higher dose and with another medicine added to it and I am breathing oh so much better :)
IT is absolutely wonderful to be able to walk to another room without stopping to catch my breath on the way. I cannot put into words the relief I feel.

Weather reversed itself from 70 to about 30 and very windy but still sunny.

I am going to be making a cake (from scratch) that my sister-in-law, Leslie, made. It was scrumptious. It was called harvest cake but she and now I refer to it as apple cake. It has fresh apples and nuts and a light carmel glaze. My kind of cake. I get to use my new mixer. Leslie got a red one for Valentine's Day and named her Ruby. She called last night and asked me what I had named mine. Ummm nothing. She said well then she will be Olive. Yes she is green although more of an apple than an olive but she was so enthusiastic about naming her that I will keep Olive l0l.

I am joyous for the first time in weeks. I can breathe. Something most of us take for granted everyday but when you can't do it, trust me, it's major. Have a wonderful weekend. Spring is around the corner.

So much going on............

Yesterday was a crazy day. It started with me getting a CT scan of my chest to see how the pneumonia was clearing up. When they went to lay me down I was gasping for breath and the technician got upset. I assured here this has been happening for a week and she proceeded after agreeing that I could not elevate my legs on the wedge. When it was done a doctor came in the room looking very serious and began to ask a lot of questions about my heart surgery. I could tell something was wrong but I wasn't really eager to hear about it so I got my DVD copy for the doctor and left. I then went to the eyeglass place to have my new lenses cut for my existing frames. I have to tell you that I have terrible vision and now need progressives. I went to THREE places to price just the lenses and each place sold the same manufacturer and the price was consistently $550.00 just for the lenses! I had to have them. While they were putting the new lenses in I drove and got myself a diet soda. The weather was beautiful and I tried to soak it in. I returned, picked up the glasses and headed home. There was no phone message from the doctor so I was thinking maybe I misread the doctor (which I rarely do.) The mailman delivered my new laptop battery which I had waited weeks for. We had some leftovers for dinner and then I heard the cell phone ring but couldn't get to it before the house phone began ringing and my lung doctor was calling. It seems I have fluid and plenty of it: in and around my lungs. She said I had to up my lasix, doubling it and take potassium with it. I also needed to call the cardiologist and make him aware of this.

I had to run to the hospital this morning for a blood test. Did that and made it home before 9 a.m. when all the phone calls began. I need dr. a to fax this to dr. b etc. They all need copies of things that each has done. I need to see all of them next week.

I don't know where I am....what is the real problem: heart or lungs or perhaps both to some degree. It's scary but I've been dealing with it for nearly two years now. I want answers but they seem so slow in coming. These are not the first doctors who have tried to solve this. Half a dozen of each specialty have seen me. I am following their orders and taking it easy. I really have no choice.

I am trying to keep my mind in a peaceful place and assuring myself that this will get resolved and life will go on. I just want to be able to walk without struggling for breath. Patience grasshopper.

Happy Valentines Day

This is my Valentine. He has not had it easy of late because I have been rather cranky. He has taken over much of my duties here and at times it makes me feel guilty and frustrated. I am very particular about how things (such as laundry) get done. It's very frustrating to me when I see my new black T shirt covered with white lint or some of my clothes have been shrunk. At times I just cry and I know it sounds silly but I don't want anyone doing anything for me. I want to do it all myself. I always took pride in being so independent. Now at night when I have some episodes where I am struggling for breath I feel I am not the same person. Ronni commented that "This too shall pass." I know this is true. It's just finding the patience until it does that I need.

This morning I went for an overdue mammogram and bone density scan. I already know that the area above my navel has thin bones due to radiation. The others seem okay as far as I know. When I was giving my medical history to the technician she looked shocked. When I had to lay down flat for the test it made breathing so difficult she wondered if I could do the test but I did. It didn't take that long and I wanted it done. The walk through the maze of the radiology facility left me tired and breathless but I did it. It was a sunny 55 too which made it so much nicer. I know that I am making slow progress. The breathlessness is something that will never totally be gone as it is due to more than one factor. I have to do the best I can. I have lost weight since my wedding nearly nine years ago. I hope to still lose more if that will help.

One day at at time. That's how I have to do it for now. I have much to be grateful for and I have not lost sight of that. I have survived cancer for thirty years. I deal with the problems now of radiation that they no longer give so much of. Would I do it again knowing all the problems I would deal with now?

ABSOLUTELY. When I feel my lowest I sometimes forget my goal to enjoy each day. It's hard when you feel poorly but I need to focus on the better days ahead and surely, they will come. When I see my first flowers bloom I know that my spirit and zest for life will be replenished.

A Day Out

Today I went on my rescheduled eye appointment. It was originally to have been when I was in the hospital a few weeks ago. I needed a visual field test, pictures of my optic nerves and the thorough exam. I arrived at 2;30 and wasn't taken in until three. They were having problems with the machine that takes the pictures of the eyes. I did the visual field first and then they took the pictures which took forever to print out. I then waited about another twenty minutes before I saw my eye doctor. I believe I actually whined to him about being so very tired and explaining this was my first trip out on my own and that the handicapped parking was not available and I had to walk a long way into the building. This is not like me. He has treated me for years and said that he was a little concerned and offered to walk me out. I did order new lenses for my frames that I have. My eyes are so bad and I wear progressives. The lenses will be $600.00. I had priced them three places and all were the same. The cheaper places like Lens Crafters will not make my lenses. It will take about two weeks to get them. My reading prescription had changed a lot causing me problems when I tried to read.

I had made a list this morning of what I was going to do. As I climbed back into the car I decided that I had to scrap that plan. I just couldn't push myself. I was exhausted and needed to curl up somewhere. The fatigue is still with me and I need several naps a day. The coughing has improved somewhat. I still wake up every night several times. I am either sweating, having bad dreams or need more water. We are expecting some rain/snow tonight. I have to call my internist in the morning and see if she can squeeze me in. I found lumps in my stomach. I believe they are from the injections of Lovenox I gave myself but I need to make sure. They are painful and if I roll on them while trying to sleep, they are waking me up.

I keep giving myself pep talks. Sometimes they help and at other times I wind up making myself angry. I just want to be better. I guess I am better, I want to have enough stamina to do something and enjoy myself. I did bundle our tv, internet and phone. We went with FIOS and now have tons of free channels for the next three months. Every couch potato's dream: constant programming.

The doctors agree that I am getting repeat bouts of pneumonia because of not having my spleen. My immune system is weakened by that and age will also factor into that. There is no fix. All I can do is be careful to avoid sick people which is nearly impossible. The key is to get EARLY medical attention once it is clearly becoming pneumonia. Most likely I will need weeks of IV antibiotics each time. Oral medication doesn't seem to work any longer. When I am feeling better I am going to try to research and see if there is anyway I can try to improve my immune system. I do eat lots of foods which contain vitamins and natural chemicals but perhaps there are more.

Looks like my ativan is kicking in and I will be going back to sleep now. Sweet dreams.