|Enjoy "Nocturn 1" by Chopin.|
Had the first bone marrow appointment last week. It is so scary and so sad. I am having a very hard time concentrating because of all that will take place. I took my birds to L and now it is very quiet around here only Blaze and Litany are left. Another friend will take Blaze in June. My daughter will take Litany in July. I wonder if I will ever see them again after that. The Dr said I might never have animals again in my house. It seems all of life is just going on and mine has gone into suspended animation. Its like no one understands but then that is my fault because I dont know how to explain what it feels like to see life go on for others and mine ending. Even the ones I love dont seem to understand. Its like I am looking at everyone just scurrying around doing work as if work were the only thing that really matters. Life is so short but is the time we spend on so much stuff really worth it? So much time is spent trying to make money or trying to learn but for what reason? We give ourselves to working for things. The people in our lives are there. They want and need time but we say, "after while Im busy, I have work to do". They have other things that are so much more important than you. They seem to think " I have a life to build and money to earn and things to produce and time to make count no time for people no time to hear no time to listen no time because the time has been given to busy-ness". Then they say, "ok I will listen now because I have a few min. to give". They dont even realize that the time to hear passed when they said I am too busy right now to stop. The time to listen passed when they thought, " my work is more important right now. Hearing and understanding passes. Work IS important and making money IS important but they are not the most important aspects of life and yet they are the things that have CHOSEN to be the most important of all of life. Time is segmented to leftovers for the loved ones in our lives. When there is nothing else that can be put it that space they then will offer to give some time. Time is filled with everything else. Work is on the table but the best of the time is spilled onto the ground into crumbs that have to be grabbed and looked for on the ground. The best part of time is given to busy work and the time that is really needed to be given is on the ground being trampled on and rarely spent for those who we say we love. If this breast cancer takes my life in less than 5 years life for others will go on and the busy work will fill in all around. Even then there will be no notice after a few days that I even existed for time only is important to those who are living it. But, I am just as guilty for when have I given time that counted to anyone? Did I give time to my kids like I should have?
Did I give time to hear them or be with them? What did I spend all my time on? I worked to get a degree in music does that even matter now to anyone? I worked to learn about so many areas. I learned about how to be a teacher, how to be a bank secretary, how to be a dentist receptionist, how to be a Tupperware mgr., how to be a sewing machine mgr. I learned how to be a mission director in church, how to be a Sunday School teacher, how to be a Training Union Director in churches, how to be a church pianist how to be a State Piano Specialist, how to be an Orchestra director and how to be a music assistant. I spent hours and hours and hours of time but what does it matter to my kids or to my brother or sisters or to anyone else? Nothing at all for what difference did all of it make in their lives how much time have I spent on real life? Is being productive by organizing time important? How is importance determined? Does busy-ness make our life important? I wonder if filling time is really a waste of time. I think somehow when my life ends and it may end sooner than I want it to end my life may only have had a few important days and the rest was only filled with busy work that no one else even will care about or remember. Its just like the things I remember in my life. The things that are important to me have been the gentle things from others, the times of listening and crying together and laughing together, of sharing in intimate ways whether they were happy or sad just the sharing was important that is what I will remember when I die I doubt that I will say to anyone I love: thank-you for your work that you spent so much time on to learn about stuff and gain money to spend on stuff for what difference did that make when the dying process came no I will remember the times of time spent in hearing and listening and seeing of time given for togetherness that will be what is important the time when comfort came that time when laughter was given and received that time when life was shared with the soul. I wonder why when those things are the most important things that they are the last and the least to be shared? It makes me so sad so sad! We humans dont understand about life until life is coming to a close how utterly sad. I guess what it boils down to is that life is made up of doing the things we think will make our own life productive. We do not understand that the things that make our life really productive are giving our time to the ones we say we love. Time that THEY need not what we THINK they need. We think they will be so happy because we are productive and work and make money and spend all the time from morning to night gathering new information and new ideas and more money to spend and we call it important work that they need. I wonder if that is the truth of what we need at the end of life I guess we will know I wonder why we cant seem to know that before it is too late and the ones we say we love are dead? I wonder why we cant seem to know that before our own life is going and we are almost dead why oh why is that?
My friend called today and said the Mr. is having an angiogram on Tues. Even his life is changing.
I saw a funeral procession go by today and once again am reminded how fragile life is.
It feels that all is changing and there is nothing that I can do about it. Trying to stop the changes wont do any good because it takes more than me so I just give up. I cant do anything about it.
February 21, 1999
Began the last set chemo last Mon.,Taxol. However, I will probably have to have a bone marrow transplant so there will be more and worse chemo then. Will this ever end? Taxol causes a tremendous amount of pain and my thumb on the tip end has no feeling now I feel so sad. It doesnt matter anyway for those I care about I dont want to hurt by saying things they dont understand. When they get sick someday or get ready to die then they will understand and that must be good enough for now. Life just goes on. I could talk to my daughter or sister but I dont want to cause them pain so I will just keep quiet.
March 4, 1999
Had a scare but all seems ok now. My liver test came out high during the chemical panel blood tests and had to take a cat scan to see if it was the chemo damaging the liver cells or if it was the breast cancer that had gone to the liver. As of right now it does not show up in the liver so they hope that it is just damaged liver cells but they will continue with cat scans every few months. Had the simulation for the radiation treatment (Wed) which will begin next Tues. It will be every day except Sat. and Sun. for 30 treatments and one booster the last treatment thats about 6 weeks.
The process of the chemo and waiting to see if it works scares me.
I haver't written in awhile. Just wish it would all go away. The radiation doesnt hurt but the position of the treatments is very uncomfortable. I have to put my left arm up and behind my head and lay on a narrow table. The huge machine is positioned over me and the nurses leave the room. There are six areas for the radiation. Each lasts about 30 seconds.
The nurses were late today (one and one half-hour late) getting to the clinic so we were all standing outside and talking. I was standing next to this lady that I had never seen before when all of a sudden she looked at me and said "you dont have any eyebrows, you dont have any eyelashes and you dont have any hair! Do you have any hair anywhere on your body? It was funny after I thought about it but it was also shocking that an adult would say that to any one. The bad thing, I dont have any hair anywhere on my body. There sint even any hair on my legs. I hope it grows back someday. It would be nice to not have to shave my legs but I would still rather have hair on my head and eyebrows and lashes.
April 12, 1999
My daughter and granddaughter went with me today to NO to have a bone marrow biopsy. The Dr. wanted to make sure there are no microscopic cancer cells in the bone marrow. He will have the results in about 3 days. This was done as an outpatient but I wished it could have been as an in patient. It was very painful. The Dr. did give me more than the usual pain medication so it was not as bad as the bone biopsy I had had in 1994. For that biopsy (due to the tumor that is in my spine) the area would not deaden for some reason. They pushed the big needle up from the hip area. It took two people to hold me down. The pain was excruciating. Never will I have that again without being asleep!
The last day of radiation is April 20. I was supposed to have the last of the Taxol on the 19th but Dr. E moved it to April 26 instead and will begin the bone stem harvest on May 3. That will be scary because there will be surgery the first day to implant a larger catheter and I will go 3 - 5 days of 4 hrs. each to remove the stem cells. The catheter will be removed the last day.
May 9th my brother, sister-n-law, their children, my sister and my kids will be here for my granddaughters first birthday party. Then the next afternoon we all go to Dr. E office for a conference. I will remain in the hospital and they will all come back here. There will be 4-5 days of high dose chemo. I decided to not say anything more about anyone staying or coming or visiting and what ever will happen will just happen.
The day for entering the hospital has been moved again. The Dr. thinks my radiation area of skin is still "too hot". The double dose of chemo will now be on May 3rd. The harvesting of the stem cells will begin on May 10th. I talked with the nurse yesterday and she said that I will get anemic and tired but other than that the removal of the cells probably wont make me sick...that is good! They will put a temporary catheter similar to the one I already have in my chest for the removal and remove it at the end of the time of removal of cells. The conference for questions of the Dr. will still be on May10 at 3 PM. The Dr. advised against anyone coming to stay the week of the high dose chemo. He said I would need them when I got home and that I would be either vomiting or sleeping and couldnt visit anyway the second week. All this scares me.
Time goes on and life goes on...that is the hardest part. It's so strange because I know in my mind that that is the way of life but it's hard to face because I wonder about the people that my life affected. It's funny because we work and do all of our lives and yet at the end the only ones that really have any part of us is our children and our mate. Others come and go...they will remember for a small amount of time but then their lives will continue and the water of life that surrounds them will fill in all around and the remembrance will be so faint and then it will go. My sons grandparents on his fathers side will always be in his heart because he told me one time that he loves the outdoors because of his grandpa's influence. He will always carry that in his heart. I wonder what my grandchildren will have left in their hearts of me since I saw so little of them in their short years. I gave my life to so many things over these 55 years but which ones really counted I wonder. The years of teaching school affected some of the kids for I have seen a few of the parents in recent years and they have told me how their children remembered my teaching...that feels good. Some of the children I taught piano to sent me graduation cards and told me they were in music in college because of what they learned through me and that feels good. It is just that that seems so small in comparison to the amount of years there were.
Well I read the following (have read it in many other places also) and it is so scary!
"These chemotherapy doses are so high that they actually destroy the normal blood producing stem cells. And without a resupply of these stem cells, normal blood products would soon disappear, and that is a situation that soon leads to death. Now in an autologous procedure the patient's stem cells are retransfused several days after the high dose chemotherapy is administered, once the drug effects have worn off. The stem cells then re-populate the bone marrow and begin to produce blood cells. Generally the patient's blood counts return to relatively safe levels about two weeks after the reinfusion of stem cells.... improved survival at 3 years but not at 5 years... We felt that since the prognosis for patients with 10 or more nodes was really so ominous that we really had to try to do something to improve the overall outcome. study for example shows a 27% fewer relapse in the transplant group but a higher therapy related mortality rate in the transplant. "
How do I talk when every time I try I'm told to have a positive attitude or you will be ok or everything will be fine and it will all be over soon? But, what if it isn't? What if this is the last chance to hear the voices and see the faces of my children? What if I never get to see the new baby? When I grew up there were memories from traditions of my grandparents. I wanted them to have the memories that would give them joy when they grow up like my grandmother gave me when I went to her house and she baked bread and dumplings and wedding cake. She was so kind and fun to be in her home during every summer and I wanted my grandchildren to have those memories. I wanted them to have the tradition of returning home at Christmas time and having all the cousins acting out the Christmas Story. I love my daughter so much and am so proud that she has grown into such a beautiful and strong woman. I am so glad to have had the privilege of loving her and watching her grow from a baby to a young woman. I am also so proud of my son. I love the way he asked God for a wife. God certainly answered that prayer. She is such a precious person and so right for him. I pray that their life will be lived depending upon each other as they raise their children and lean on God. I pray that their life will be in closeness for that will sustain them all their lives even in the bad times. My son has the chance to share in oneness of soul and spirit as he shares his physical body with his wife and they do the daily work and play from a real house with real joys and sadness and activities. They will, I pray, grow old and then die in old years after sharing for many, many years. I also love my other daughter so much. She has been a joy to my life ...a joy that cannot even be measured...how I hate leaving her before she was old and my granddaughter was grown! Now, what kind of gift have I left of my life for them?
It is also still so hard to listen to piano music but has been easier the last few months. It is as if that part of my life never was. That was so hard to give up for I thought that God would use me in that area for the rest of my life. I should have known He wasn't for I always had urgency about the learning of the music and the playing and writing of the music as if there were a limited amount of time. There was and it is over.
As the time for the bone marrow transplant gets nearer I feel a greater urgency to finish my life...it's like a dream though...maybe I will wake up soon. I need to make sure the Christmas presents are purchased and wrapped. What does everyone want or need I wonder. Well, next week I will try to get at least one thing for everyone so that they will have something to open from me under the tree. I want them to know that my thoughts were for them even during this time.
It is funny for today I remember when I was a child on this day each year. May Day was a big thing then. We would make little cone shaped baskets and pick flowers to but in the baskets. One of my sisters and I always had fun taking them across the street to an old lady missionary (probably all of 50 years old at the time) and ring the doorbell and leave the flowers and run away. That was so much fun! That would have been fun to teach my grandchildren to do.
If I can plan the presents for Christmas they will be ready for where ever they have Christmas. Let me see .
Had double dose of chemo today...It was a hard day and tiring...but it went ok. No one was with me even though that was very scary but it turned out ok. I slept through most of it and read some also and it was not too bad really.
I dont feel very good now though...will have to watch my fever since I had fever yesterday but it is not enough to worry about...only 99.9. So unless it goes over 100.5 the dr. said it was ok. I took a nausea pill and that helps. Before leaving the hospital a funny reaction was happening...little firefly lights were flying in front of my eyes. They were there whether my eyes were open or closed. They have finally stopped doing that but I will ask the Dr. about that tomorrow but since they have stopped they are probably just a mild reaction to the chemical. My daughter came back to get me after it was over and so I got to see my granddaughter. I was so glad to see her. She is so precious!
May 5, 1999
The time is going by so strange now. It feels like such a bad dream...like I am watching ever thing go on around me and watching my sister and brother make plans to come because there now there will be a funeral soon. Its like I am planning for the birthday party and the finishing of the building of the computers for my son and his children so they will have one last thing from me but all of it is like Im in a trance. It doesnt feel real. I am the watcher and the player at the same time. The time is drawing near to take the rest of my birds and Litany away. My heart will break! How will the days feel without them?
My hands, feet and legs can hardly move now they hurt so badly. Its a good thing for pain medicine.
May 7, 1999
Its hard to type because I have no feelings in the tips of my fingers. The pain all over my body is almost more than I can stand.
I do not want any extra ordinary means to keep me alive. If I am put on a life support that is fine but I want to be taken off of it if it is deemed that my life will be of no quality. If I live I want to be able to move around on my own, to be able to feed myself, to bathe myself to go to the bathroom myself. I do not want to be anywhere near a vegetable. Please remove all life support from me when that is the only way to keep me alive. Do not feel you are killing me...look at it as removing the machines so that my hands will be free to take the hand of Jesus to walk with Him into heaven. I am not afraid of being in heaven for I will see my Dad and grandparents and many others. You see me as a big baby because I hate pain and I hate being sick and going to the Drs appointments. I have hated going through this cancer...it has scared me so badly ...it has not been easy to handle. But, I am not afraid of the hand of God so when all measures have been taken to restore quality of life then place my hand in God's hands and I will walk with Him and will smile as I walk through the door of heaven.
May 8, 1999
It is so hard to type now with no feeling on the end of my fingers especially the right hand. The kids came yesterday. I was so happy seeing them...it had been since November since the last time. It felt like a hundred years! At least if I die I will have gotten to see them one more time...that really satisfies me knowing that I got to see the smiles on all their faces. I had missed them so much. Thinking about dying it is sad that I won't get to be an influence when they grow up. That part makes me so upset. I wish I could have had the choice to make the cancer not even exist but there was no choice. I just pray that my grandchildren will grow up and be safe and happy in their life work. I pray that they will give as much joy to their parents as their parents gave me all these years. Even if I could have picked my children from a whole group of them I could have not chosen ones that I could have loved and been more proud of than the three of them. I could not have chosen any other sons and daughter-in -law any better. I love them and it feels even like they are my own flesh and blood. I will die with no regrets for my childrens choices of a mate.
May 9, 1999 PM
It was a blessing today sad and happy at the same time. My third grandchild is one year old today. She will be such a beautiful person when she grows up. She will be like her mother. I am so proud of her and so thankful to God that He let me know such a special young woman that I was privileged to call my daughter.
It was also a blessing because my son and his family came and stayed the weekend. I pray they have a good trip back. They gave me a beautiful Mothers day present. They are expecting another baby in July. I may never get to see the baby or hold it or watch it or the other grandchildren grow up. They had the technician that did the last ultrasound write down what sex the baby is and put it in an envelope. I get to read it and know what the baby is and in that way I will get to know my newest grandbaby in such a special way. How I thank them for giving me that special gift.
It was hard to see the kids go. I couldnt keep from crying. My son understood. He didnt say a word. He just held me and said I love you Mom. Yes, he understood and oh how grateful I am to him for that precious moment.
Went to the hospital yesterday to have the stem cell removal as well as the surgery to place the catheter in my chest. They were able to put the catheter in and it hurt so badly that I cried just like a baby. I was glad no one was with me so they would not have to be upset to see that. My blood count was too low to take any stem cells though so it was disappointing to not just get it all over with. We then had a good meeting with Dr. E . I trust him and know that he will do all he can to try to make things go smoothly. Today the count was high enough to start the collection. They should know tomorrow or the next day how many days it will take to get enough. If they get enough by Friday then I will enter the hospital on Mon. to begin the high dose Chemo. I wish it were all over with. I feel so trapped and very upset that I cant just run away and be somewhere else and make it just go away somehow.
My daughter called today she had gone to the hospital yesterday to go to the meeting but missed us since it had been moved to an earlier time due to the inability to get the stem cells. I am so grateful that she went. I love her so much and it seems like she has forgiven me for whatever I did wrong. I am so very grateful for that. I have 3 children I really have 3 children!
My second daughter and her baby came by today. She gave her two-week notice at work today. She wants to stay home with her baby. I am glad for she is a great mother. I love the job she had and hope that someday she will have another opportunity for such a good job but the job of being a mother is even more important so Im glad she chose that! Im going to bed now. I do not feel good at all so much pain so maybe sleep will help.
May 12, 1999
Its my sons birthday today. I can still see him as a tiny little baby. It seems just like yesterday that he was born and now its nearing the close of my life. Life just went so fast!
Had more cells removed but will take the rest of the week may go into next week unless the count goes up even more. The platelet count is only at 50 so probably will need to be given platelets at the end of the week. It feels like such a bad dream. Everyone is planning everything and I am planning with them but the horrible real time is right on the other side of the door and the dream is getting worse.
It was a very hard day. It was the last day to remove the cells and they got enough for back up cells if needed. That is good. They removed the catheter and did that hurt! But at least that is over. When the head nurse came in she told us that the chemo would be for 4 days straight for 24 hours at a time. What a shock! I did not know it was for 24 hours at a time. I thought it was like the other chemo days several hours per day. That was a terrible shock. I go into the hospital on Mon. at 8 AM and they will start me on the hydration medicines and then put another catheter in for the chemicals. I will be given three chemicals at the same time. They will start the chemo in the evening.
I just got a call from Dr. E and the day for entering the hospital will be Tues. AM instead of Mon. AM.
.My baby sister just called and is coming for a week beginning Wed. This will be the first time that all of us have been together at one time outside of my hometown at Christmas or summer times. I am excited to be able to see her too. I remember when I got married when she was 11 years old. She cried and cried and cried and for several days she was upset because "my sister is gone". She cried on the phone when she was telling me she was coming. How sweet she is. My baby sister is really coming to see me during this time.
It is amazing how my sister and brother and sister-in-law have shown a love that I will always treasure whether this is the end of my life or it is just a hard time in my life. My brothers wife said " no amount of work or time is more important than being with you during this time". Those are precious words that came from her heart. The fact that they are coming and my sisters are coming fills my heart with a safety that if this had been the only way to have heard it to be sick like this then I would gladly go through it again just to hear those precious words. How beautiful!
I just opened the envelope that my son and his wife gave me for Mothers day. Their baby that is due July is a boy! I am so grateful that in this way I get to know my newest grandchild even if I die during the bone marrow transplant. I pray that God will use him. I pray that he become a Doctor and continue helping people in his life just as he as a tiny baby has helped me feel a great joy today knowing that his little life is at the very beginning. He will be a big part in my mind as I try to get well during this cancer. His little face and body will be desired to be seen and in order to see him I must survive this bone marrow transplant experience.
I just thought of something! Not having a dream for the future has been so hard all the plans for life have been shattered by this disease. But, I have one picture that can be seen 4 little sets of eyes to watch and know that if I live I will see them grow. The faces of my grandchildren can be seen for in them there is a dream! If I get to live I can see them even when they are sick or I am sick if I die I will be able to be with them as well as my children and my brother and sisters there is a dream that CAN be. I will look at that for it is too hard to live today with out a dream it is too scary to die alone and without a dream. It hurts too much to be sick without my mind on a dream.
My son and grandson came late tonight. They wanted to tell be they love me and to see me one more time. He does understand. They will have to leave before 8 in the morning. That was a very long distance to drive for just a few hours. I really am grateful that they came.
May 18, 1999
Today is the day. Oh how dreaded this day is! Tonight the high dose chemo begins. There will be three different chemicals going into my body for 24 hours at a time for 4 days. The blood cells will be destroyed and there will be no memory of having had any child hood diseases. I will have to take vaccinations next year all over again if I get to live. I don't think I will be alive that long but maybe I will. If the bone marrow that they put back in me does not take then I will die for sure because no one can live without blood cells. There is no where to go now for sure. Why am I doing this? I must run away! No, I want the chance for the dream. I want the chance to see my children and grandchildren again. I want to see my birds and dog again. I don't think I can live without my animals . The house has to be cleaned , the air-conditioning system has to be completely cleaned, there can be no living plant in the house and no dried flowers or plants. It will be too dangerous to go any where for at least the first 100 days. Too many germs floating around. I don't think I can stand all this!
May 19, 1999
It is not easy to write, read or even to watch TV! So terribly sleepy and it hurts so much. The nausea is so bad!
It is too hard to write now the chemo is over. I have been so nauseated and sick. I have never been so sick and its just getting worse. There is a constant nausea. I have 4 or more IV bags at all times. It is too hard to eat anything now so must depend of the IV fluids for that. The pain is getting worse. Tomorrow is the actual transplant. How much worse will it get. I dont think I can stand this.
The transplant was done the evening of May 25, 1999. They gave me medicine to make me unaware of too much. It was extremely painful at the beginning of the procedure but after the Dr. got everything regulated it was better. I dont remember much of the last few days. There has been extreme pain and nausea. There is much medicine for pain and nausea so my thinking is not clear. The dreams at night are terrifying. Every time I go to sleep the same dream comes. Each time filled with blood and killing of people and animals. I am afraid to sleep but the medicine makes me sleep yet I can hear everything that is going on all around me. Its like I am asleep and awake at the same time. The diarrhea is terrible. I keep vomiting. Someone please help! Oh dear, I better not let anyone see all this. I dont want to worry them. Im glad that my sister was here part of the time but that she is not here all of the time. It would not be good for her or anyone else to see how hard this is. I dont want to worry everyone. It feels like I wont make it. I wonder where God is. Why couldnt my dream be filled before I die? Death when are you coming? Thank goodness there have been so many prayers for I think I would have died by now without them.
May 31, 1999
The nurses come in every few hours to take my temperature and other vitals checks. Every morning at 3:30 blood is taken and checked for how the white count is doing (it's 0.02 today). They give me anti-nausea medicine. I'm surely glad for it but it doesn't stop the vomiting completely. The pain is awful so they give pain medicine by a patch as well as injection into the catheter. Since I can't eat and have diarrhea so bad they have a bag of liquid nutrition hanging to go into the catheter at all times. They weigh me everyday and everyday my body gets more and more bloated. The medicine makes me sleep a lot and not remember things. It makes me have terrible dreams and people tell me my conversations don't make sense.
June 3, 1999
The Dr. will release me on Monday. It is so hard to walk. There is no strength at all. The Dr. said to expect to be as weak as a newborn kitten for a long time. My sister will be with me for about three weeks to be the caregiver. She will have a very tiring job. Every thing has to be washed with a special soap. Every thing that is cooked must be eaten right away or covered in a special plate for me later. I have to have individual jars of mustard, catsup etc. I cant eat peanut butter or lettuce or sushi. There can be no buffet foods for six months to a year. There can be no dogs in the house for at least 100 days and maybe longer. My birds may never get to come back home because of the bacteria that are caused when their droppings dry and float in the air. That breaks my heart and I dont know if I can handle that at all. I cant go to the grocery store or church or where there is a crowd of people. The first 100 days there is a big chance of getting pneumonia so must take very strong antibiotics to try to prevent it. At the end of a year I will have to take immunizations for illnesses all over again as if I were a baby. My body will have no remembrance of ever having chicken pox or measles or any other illness. I cant go into the bathroom after any spray has been used until the odor dissipates. There can be no live plants or dried plants in the house. There can be no bug sprays used. I cant go get gasoline in the car. There can be no changing of babies diapers or kissing them near their mouth. There is to be no cleaning the house even. The dust that is stirred up would be especially dangerous for the first 100 days. However, I can fold clothes. When cooking I must be very careful handling the food and wash my hands often. Right now that doesnt even matter because nothing tastes good. Everything is just awful and makes me sick. Even the sight of the hospital plates makes me sick.
June 5, 1999
How grateful I am for my brother and his wife. As busy as they are he has come and called so much during this time. I love them so much.
I hope to go home today but may not get to go because I have fever. Last night was a terrible night again. Could not breathe. My nose was so stopped up. It has never been like that before. Had to sit up all night.
June 10, 1999
Well, the tiredness is much worse than I expected since returning home. Just to walk across the room takes great effort. It is so hard to eat. The only way I can do it is by eating a bite or two of food every hour or so. It is so difficult to do though. The nausea and pain is severe. I still have fever and that is not good. If the fever goes more I will have to return to the hospital. Thank goodness my sister is here.
July 1, 1999
It is so good to be feeling much better. My sister returned to her home because I can pretty much take care of my self now. I still get very winded. Getting stronger will just take time. I am doing very well. I get to go back to my regular oncologist in a few weeks and will only have to return to the bone marrow Dr. if something major happens and for the next major checkup in May of 2000.
July 22, 1999
This is a great day. The Dr. said to go to my regular oncologist now except for any emergencies. That will be so much easier since he is about one hour closer to my house. The best news is that Litany gets to come home next week and even my birds can come home around Christmas time. I will still have to wear a mask and gloves when cleaning the cages but that is ok. I wont mind at all. When I called the friend that was taking care of my Moluccan cockatoo she told me that my bird had died. That made me cry. However, since my friend is a bird breeder I will get another one from her in the spring. I decided to name her Summer. It was in the summer that hope returned. So, since I love birds so much I thought that when my Moluccan gets here I would name her Summer because she will remind me that when summer came hope returned. This is my summer of hope. My grandchild really summed it all up. When I called him after getting out of the hospital he was so excited. I thought it was because he was taking swimming lessons. However, when his dad asked later how his swimming lessons went my grandson said "fine" but I talked to grandma and guess what:
These are my sisters and brother with his wife on the second day of the high-dose chemotherapy. The sister who is nearest me was the consistent and loving care-giver. I could not have handled this ordeal without her.
|Summer of hope brings Time............for a season|
|Has all this been worth it? Only time will tell. I do know that because of the bone marrow transplant I have about a 75 % chance of being alive in five years. Before the transplant there was only about a 25% chance. I know, also, that I did all that I could to try to live longer for I wanted to see my children and their children grow up. I wanted a chance for a dream to return. Yes, it is worth it because summer came and Im alive. My beloved animals will be here once again. Summer, my new Moluccan cockatoo will be here in the spring and will always remind me that it was the journey of darkness when I was unable to see any light that hope of the dream was lost. She will also remind me that it was also in the summer that the dream began to grow again. God indeed carried me on his wings like an eagle and covered me with His feathers.|
|Some of the saddest words that can be spoken are "but, it's too late"|
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