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|The Journey ... Summer of Hope|
"...I carried you on eagles' wings..."Ex. 19:4
I went for my regular Pap smear, check up and the Dr. found a lump in my left breast upon his examination. The mammogram had been scheduled for the following Mon. (Oct. 19,1998). I wanted to go earlier but because Oct. is breast awareness month there were no appointments before that time.
My mammogram and dexa scan (to test for Osteoporosis) was done at noon. The mammogram was abnormal so a compression study was scheduled for the following day.
The compression mammogram showed the abnormality again and therefore an Ultrasound was done. The Ultrasound showed abnormality. The Dr. recommended that I see a surgeon for a biopsy in case there might be cancer. I went home that night and searched the Internet for all the information I could find on detecting breast cancer and looked for as many examples of mammograms and ultrasounds I could find.
I saw the surgeon and he did a biopsy. He said that the lump, the mammogram and the ultrasound all looked like breast cancer but that there could be something else that it may be but that he did not think so. He scheduled me for another appointment next Tues. at 4:30 P.M. and told me to bring someone with me to give support. I asked him to please call me by phone if he found out on Mon. and tell me I wanted to know even over the phone. He told me we will talk about options for treatment - two of them being mastectomy and lumpectomy. He said that if it was not cancer that the lump needed to come out anyway but to not expect it to be benign.
The biopsy: A needle was inserted in the lump 5 times and each time a clicking sound was heard and each time it hurt worse than the one before. It bled a lot and swelled so ice was placed on it later. Thank goodness that a bit of local anesthetic was used before hand. It hurt a lot for the rest of the evening but hardly any at all the next day. It was only sore and swollen and bruised.
I feel strange. It is like I am watching a movie of someone else not me. My stomach is very queasy and I cant relax. I have not told the kids etc. yet and wont until I can tell them more than what I know now of course I may not know much more than that it is cancer on Tues. and maybe the type of breast cancer but at least I can say it is or is nott not just maybe. I want to think of what might happen if it is already in a late stage since it is already more than 2.5 cm in size but when I do I get all upset in side so will wait for that also until I know for sure. My insides tell me that it is cancer. My insides knew it when the Dr. found the lump. For about 4 or 5 months there has been a spot below my left shoulder blade that has been hurting especially when laying on my back. I thought it was the hydal hernia that was just acting up but I wonder if the cancer has attached itself to the breast muscle or rib. I guess time will tell.
I am leaning toward having a lumpectomy with radiation or breast reconstruction with the free flap method if possible. This is desired to be done all at the same time if possible.
This makes me feel so sad because now my daughters will have to be concerned about getting breast cancer, as will their children.
Today is my 55th birthday. What a way to spend it! It is so hard to wait and wonder to hear from the Dr. It seems like an eternity since the Dr. first found the lump but it has only been two weeks. I think (right now anyway) that it would be easier to know I had terminal cancer than to be waiting and not knowing for sure if it is cancer or it is not cancer. I find it really hard to concentrate on anything. It is also hard to really get too far into depth reading about different treatments. I want to be well informed if it is cancer and when the Dr. makes different options of treatment known. However, every time I try to really pay close attention and weigh the pros and cons of each I get a sick feeling in my stomach and dizzy feeling its just too hard to think about that now so will not think in depth much yet. There are other feelings about the possibility of breast cancer that crop up but I dont want to sound like I am complaining and there is no one to tell about those feelings so I guess that part of this process will not be paid attention to at least I will try not to pay attention to it. I also thought yesterday that every lump that I have ever had looked suspiciously like cancer. The thyroid lump, the eye lump, the ovarian lump and the lump that is in my back. All of them were thought to be possibly cancer and especially the one that is in my back. So maybe my cells just look weird on the x-ray type tests and other tests. Maybe weird is normal for me and the breast biopsy will be just another weird looking cell on the tests and actually only be harmless and benign.
I wonder if it is cancer if I should tell my daughter before her birthday or after her birthday I dont want to make her have a sad day. I really dont want to tell anyone at all. When I go to the hospital for the surgery to remove the lump I wont tell anyone just too much fuss. I certainly dont want to tell Mrs...because she will worry a great deal and hover! If it is cancer I hope that A... will be able to have Mrs... stay with her for a while until my treatments are over I can handle everyday recovery just fine by myself but I dont know if I can handle the "worry" from Mrs... during the recovery period. Oh well, I guess I wont think about that either right now. My stomach is getting upset again.
Its only 11 oclock A.M. and the appointment is not until 4:30 P.M tomorrow it feels so long. I will go fix Mrs... lunch now and do some more washing and ironing maybe that will make the time go faster.
Today was a very good birthday because I got a card from my other daughter that made my day special.
Well, it is now 2:30 and I have 2 more hours before I find out about the lump in my breast. The Dr. should have the needle biopsy report. If it is malignant he will explain some of the options. If it is benign then he will tell me when to have the lump removed (he told me the other day that even if it is benign it needs to be removed). I will go roll my hair and get dressed now and go to the library to get Mrs....some magazines before going to the appointment.
I got back from the Dr. and just as I thought: Invasive Ductal Carcinoma. It was so strange because instead of being afraid then it was like I was in a dream. It was just a bad dread that I would wake from and remember dreaming. But, now I feel very afraid. Im not afraid to die for I know that my Dad is already in heaven and I will get to see him again I wonder what he looks like now and if he will know me as his daughter. I am afraid of all that has to go on before that step. I am afraid that the most important dream in my life will never be fulfilled and my heart breaks because of that. Yet, I know that it as only a dream with so many reasons that it would never be. Its just I was hoping that it could have been. I will try not to talk about it ever out t loud for it would only make it worse there is nothing that can be done to make it different so maybe I should let that dream just die. Well, at least for now I will not think about that there are other things to think about.
My head is KILLING me right now from all the tension. I cleaned out the medicine cabinet the other day and now there is no Tylenol to take. Oh well. It is impossible to sleep right now either I thought that once the Dr. said the news that I could sleep but its even harder tonight than it has been all week. At least though the waiting to know for sure is over even though my insides already knew the answer.
Now, I dont know mastectomy or lumpectomy. The Dr. said that there was a greater chance for the cancer to recur in the same place when a person has the lumpectomy but that the survival chances are the same with either procedure. He said that they could do a breast reconstruction using the patients own skin and other tissue at the same time as the mastectomy. Maybe that would be a good choice at least the recurrence in the same place would be lower and I could have a breast that would look sort of normal without the ugly scar. At least there would be a breast to come home with. The Dr. said because the biopsy showed some lymphatic activity that he would recommend Chemotherapy also. He ordered bone scan, cat scan, MRI, and a liver scan to be done as soon as possible to see if the cancer had already invaded other tissue. He said it would probably come back negative but that there could still be some cells that were already there but just not showing up yet. He said that according to the biopsy and his examination that at this point before surgery that I have Stage 11 Breast cancer but the stage may change after surgery and we know for sure how large it is and if it is in other organs or lymph nodes or attached to the muscle or chest wall etc. What a birthday present!
I wonder if it is in my throat too. For about 4 or 5 months at various times when I would swallow food or drink soft or hard made no difference it would hurt down to below the breast bone hurt so much that I would almost cry before it got to that point. I ignored it thinking I just swallowed wrong. It happened again today and it made me think again that maybe it is something else. I guess time will tell.
I plan on giving my birds to someone. I feel so bad to do that but it will be the best thing to do. They require so much attention and for a long time to come I wont be able to give them that kind of attention. Besides there will be no one to take care of them now. Most of all is that two of them are babies and they will adjust easier now to have to go to someone new than a year or so down the road if I get worse. I want them to be happy. Also, after the surgery to remove the lymph nodes under the arm I will not be able to handle such big birds. I have been for a long time using my left hand and arm when there was something that was heavy or that required certain kinds of motion or activities because my right hand and arm hurts so much. I wont be able to do that after surgery.
It worries me about Mrs... Her dementia is really bad some days. What is going to happen to her during this time? I dont her worrying all the time. How will I take care of her if the cancer gets worse instead of better? I guess that bridge will be crossed later though one bridge at a time is all I can handle today. I feel like I am a rubber band tonight too much to think about. Tomorrow will be the day to tell the kids. I dread that.
Well, there is one good thing about all this I have lost 2 lbs. since Friday.
Maybe sleep will come now will try anyway.
Well, I just dont know that if I can give my birds away yet I will wait for awhile. I want them to have a good home but maybe things will go better with the cancer and I will get well. I will wait until after we find out if it has spread or not.
I slept a very few min. last night. It feels like a heavy weight is on me and it is hard to breathe. Im sure it is from the shock of all this.
My dad died on October 28, 1946.
I am worried about taking care of Mrs.... I dont think I can handle her dementia, which is probably from Alzheimers disease and my cancer at the same time.
Yesterday I had my teeth cleaned and of all things I need to have the roots cleaned due to beginning periodontal disease. It is scheduled for week after next. If it does nott work and make the gums adhere to the bone like it is supposed to then the next thing will be surgery. Well, now it looks like I have to cancel those appointments anyway and put that type cleaning off because of my Breast Cancer.
A. called last night and said that if I came up there to have surgery done that I could stay with them until I could fly back. I would feel more comfortable with Mayo Clinic than anywhere else because of its reputation around the world. There are three places that would be equal to me: Mayo, MDAnderson and Johns Hopkins. If my insurance will pay for it being done there then as soon as I can get a plane ticket for there I will go. There is so much to get ready to go that it is scary. The main things are my birds, Litany and Mrs...
I really feel bad about Mrs....because now she will be uprooted again just when she was relaxing a bit. The emotional aspect of taking care of her and this breast cancer is just too much though. I cant handle it. Her nervousness over where I am in the house all the time and worry about fixing her lunch and her eating right and washing her clothes and giving her bath are really hard to handle. Knowing that I am responsible for her at all times is very hard. She is lonely and that bothers me because she wants to talk at breakfast and during the day and yet its about the same things all the time and I have to yell for her to hear and much of the time she does not understand the meaning of my words. Some days are better than others knowing that she is very old and getting worse is so hard right now. I could handle it if I just were not not so upset over this cancer I think. Well, maybe I could. Most of the time I could anyway.
I called my nurse friend and read her the pathology report. She said that it sounds like it is in the lymph system also and that she would go to MDAnderson if possible. I told her I had a nephew that is a Dr. at Mayo Clinic and that he said I could come up there and have it done. She said she would definitely go and as soon as possible. She said she would have a mastectomy and chemo. And maybe even radiation to try to stop it. She said she would also have breast reconstruction and at one of the hospitals she mentioned they would have highly skilled Dr. to do that. Well, if the insurance will pay for all of it except for the plane trip up and back then I will go there.
I will find homes for the two babies. I want Tino to stay awhile longer and hopefully not have to go. He was abused when he was a baby and seems so happy here. No one else can handle him though so eventually he may have to go somewhere else.The babies need to go to a good home before they get any older. My Moluccan requires so much more attention than all the other birds put together that I know that I can't give her what she needs these next months just like I can't give Mrs.... what she needs right now. Mr.... does not seem to understand this. He thinks that if he fixes her breakfast and supper that that is all there is to it. But it's much more than that the physical part is just a very tiny part of it its the emotional part of her care that Im having a very hard time with right now. Well, at least he seemed like he was going to do something about it more last night. Its my fault its like this anyway because of not liking nursing homes. I just did not know how bad her dementia was and that I was going to get breast cancer. I dont want to hurt her and make her feel like no one wants her. She already feels like that I guess because she is always telling me that I dont have to do things that I can just put her on a shelve that she does not mind being lonely and not having anything to do. She says that I care more for my birds than her when she is eating and Im fixing for them also. She is always trying to get me to fix certain things for Mr... for supper or sit and talk with him or go places with him she calls it "concern". Oh well, I guess my emotions are just so on edge.
My side under the shoulder blade is really hurting much worse at night cant sleep on my back for long or the left side. It feels like the cancer is all the way through from back to front. It probably is just swelling and hitting a nerve. I will ask the Drs at Mayo to check that and see.
Today is my daughter's birthday. She is such a thoughtful person. I hope I will get to see her raise her daughter to an adult. She is such a good mother.
Today is my son-in-laws birthday but he did not come over today but came with my daughter last night. We had hamburgers and handed out trick-or-treat candy last night to celebrate. Well, its getting closer to the time to go to Mayo on Tues. Im getting nervous but at the same time feel relieved that A. will help me with getting a good evaluation so I can make a proper decision as to what the treatment will be. I may stay there for surgery but I may also come back here. Ill decide that after the evaluation.
It feels like nasty worms are crawling in my body and growing! Ill be glad to get this lump out!
Im not going to tell anyone but it feels like the cancer is in other parts of my body. Maybe the feeling is there just because this is cancer and the treatment has not started yet and the actual stage is not know yet.
Im so tired all the time must be nervousness making me tired.
November 3, 1998
Arrived in Minn. At 5:15. My sister picked me up from the airport and we went to visit at her house and eat then she drove me to Rochester. I have the first tests at Mayo Clinic beginning at 7:30AM.
Met Dr. B... I really like her and feel comfortable that all will go well I had x-rays, blood tests and was examined by the general Dr., Radiation Oncologist, Medical Oncologist and about 4 or so assistance and the Cancer nurse. The lump seems to have grown quite a bit and the Medical Oncologist could feel two swollen nodes under my armpit. The Radiation Oncologist told is about having a lumpectomy with radiation. The medical oncologist also told me about a lumpectomy with radiation as well a mastectomy. I now am thinking that if the surgeon says he can that I will have the lumpectomy with radiation.
Had rib x-ray and bone scan today. I met with the surgeon today also and he said he would do his best to conserve the breast. If the removal makes the breast too deformed he will then do a mastectomy. Dr. . said that the surgery would determine what treatments would be offered. I will then make the decision as to what treatments if any will be done. If there are positive nodes there is a probability that I will have chemotherapy first along with tamoxafin maybe then after that is over have the radiation therapy. All of that will be done at home rather than at Mayo. Even without positive nodes there may be chemotherapy because the biopsy shows lymphatic and vascular invasion. Well, surgery will be November 6, 1998.
Well, today is the day for surgery. I go to St. Marys Hospital, connected to Mayo Clinic, at 8:30 A.M.
Surgery will hopefully be before noon. It may be early afternoon, however, Dr. F. said it is busy so bring a book to read. I am no longer afraid of the surgery. It feels like that part is settled. I am apprehensive about the drain tubes but that is just because I am squeamish. I just want this entire unknown over with! They told me that I would not allow anyone to look at the surgery area or the drain tubes until I made them promise "not to look". It would be sort of hard for anyone to clean the wound or drain the tubes unless they looked! I think it was the medicine.
Surgery is over and I was discharged yesterday. Only one day in the hospital and that scares me but so far all is ok. At least A. and J. are here if anything goes wrong. The surgery was more extensive. Another tumor was found so they had to remove the whole breast. All but one lymph node that was removed was positive. (I cant tell where the negative node was there will be a complete pathology report sent next week to Dr. S.) Now the next stage of cancer treatment starts. I will contact the oncologist next week. My stomach has been nauseated and I have thrown up two times yuck! The wound is not covered but I cant look at it yet. The drain tubes have to be emptied 3 x a day. Mr...does that and then cleans the wound area yuck! Im trying not to cry and only did 2 times so far. I try to think it is just another thing to learn about. I cant sleep but maybe 5 min. at a time.
Mr... said that about 30 min. after I got in my room after surgery that my daughter called. I would ask how Blaze was and then say, "oh they are so sad. " Then ask how each bird was and say " oh she is sooo sad" I did that for each bird and for Litany. He said I almost had everyone in the room pulling out a handkerchief to cry but it was very funny too.
Well, I finally got to come back home! Arrived at 6:28PM at the airport and home with my birds and dog at about 8PM. It felt so good to hold Blaze again she sure missed being held.
I played with Blaze and the rest of my birds and Litany most of the day. It was so good to see them. It is easier to cry to them than to cry out loud. I am very nervous about all that is happening in my body and afraid that if I start thinking about missing people that I will not be able to handle all this correctly. I am afraid that if I start crying about my daughter and how far away she is that my heart will go ahead and break. I just wish that I could have been a friend to her. I am so glad that she married. I could not have chosen a better person even if I had tried. He seems to love her deeply and that is the most important thing to me for my kids that their husband or wife loves them with all their heart. I would like to know that at the end of their life they shared the time with the person that meant the most to them in a closeness. That only comes by becoming one with that one. I pray for that even though I may not get to see that myself. Im so thankful for my children's mates. I love them both and am glad that I got to see them loving my children. God gave such beloved kids! All three different and all three have potential to be great people I pray they live to reach their full potential. I love them so much. My life has been so rich because of them. I cant even imagine what life would be without them. It feels strange. My emotions go from feeling glad surgery is over and even joy that there is a relief from all the tension the past few weeks of not knowing so much. The next minute I am feeling so much tension that I cant sit still. It is so hard to sleep. I go to sleep but I cant stay asleep.
I have an angel in my daughter. She keeps my birds for me because she knows how much they mean to me. She offers to go to the store and comes to visit even though she is working full time and really needs all the extra time at her own home. he keeps her head at work and does a great job. I am so proud of her. I wonder if I should find a home for all the birds. I dont want to for it will be so lonely without them but I dont want them to be sad if I die this year or so. I will write a will. . Later
What a privilege to know the man I call my son! He is gentle and kind and loving. When he sees the temper like his dad had he tries to curtail it so that he wont be an instrument of hurt. I know it must be hard for him at times but he will make it for he sees the potential for harshness in his anger. He loves his wife and his children just like I always imagined a man and wife should love each other and their family. How fortunate I am to know him.
Im trying so hard to not think that this cancer belongs to me. Its getting harder to do that especially since I read the cover letter from Dr. Mayo Clinic surgeon, to Dr. S. Its hard to realize that I have advanced breast cancer. It just does not seem possible. How could it have been missed when I have had so many Dr.visits and regular female visits and mammograms? How can it get that far and never been noticed until now? I guess that will never be known. At least it explains why I have felt so very tired much of the time the past two years. I thought I was just getting older.
I have a follow-up visit with Dr. V at home and surely hope to get the tubes out. On Wednesday of next week, Nov. 19, I have the first appointment with the Oncologist and will learn about the treatments that could be done.
My sister came Friday. It is so good to see her. I did not realize how much I needed to see her and talk to her now maybe I can cry. I dont know because I dont want to and then sometimes I do want to its just so hard!
Went to the Dr. on Friday but he did not remove the tubes yet will Mon. instead if all goes well.
Hopefully I will get the tubes out today. Its a bit scary since he probably wont deaden the area. But, it will be so good to have them out!
I am going to try to think about what I want done with my birds. If I am dying, and even if I am not right now, I know that there is a big probability that the cancer is what will kill me rather than old age so I still need to write out the directions for my birds.
I want my Moluccan cockatoo to be given to J. at the Vet. It is my desire that she either keeps her as her own pet or she gives her to a person that understands birds and will give her the attention she needs. It is my desire that if at all possible that she will be used to show children the beauty of birds and let them learn about them by seeing her and asking questions about her and touching her. That can be done through the Vet by allowing her to be shown during the field trips that different schools and churches have during the year. It would be nice to have her taken to schools in the area also. I want her to express to the children for me in my absence that birds are Gods gift to man in order to show His care and love and protection. He promises that He will cover us with His feathers in Psalm 94 and she could be a way to show that to others.
I will call L and J to see if one of them will take the amazon and the other take the umbrella cockatoo. They could be used for breeding. I just hate that because my umbrella is so sweet but he just does not like men. I wish he could stay in a home as a pet so he will be very happy.
Of course Mr... will keep Litany.
I will write each of the kids a letter so they will have something after I die. I want to wait until later to write though.
Well, tomorrow is the day for the Oncologist visit. Its strange because I am afraid to admit what I know on the inside. I know that I am dying. This cancer is the way I will die. If the dream I have had for the past 18 years had already come true then I would not have minded so much to die but now I will never see the dream fulfilled. Its like the other ones will get their desires met but I wont. It makes me so sad. I wonder if I can say good bye without causing too much pain.
.My daughter called yesterday and even talked for a long time. Now, at least I can die and know that I got to talk at least one more time with her. It would have been so good if there could have been closeness. She is such a sweet person at time and so intelligent and has such a strong person. I would have really liked to have known her. I do know that I did what I thought I should have done during the growing up years. Thank goodness that she has her husband's mother because what ever I did to fail her maybe his mother can make things better for her. Maybe someday if she ever has kids she will know how much I loved her. I hope so. She will understand then that there is nothing that could make me not love her. She will know then that babies dont have directions of how to love them and teach them and that mothers just try the best they can but are never able to give all that a baby needs at times and fails often. I just wish I could have made her know how much I love her while I was alive. It's so hard to know she lives right here in town and yet she might as well live in another country. I will just accept that though for it is too hard to figure out what happened especially since I know that it is impossible to go back and undo anything in life. But if I could I would make sure she knew how much she is loved. I have lost that opportunity now but God Himself knows how much she means to me and how proud I am to have had the privilege to give birth to her.
Well, now the dream is not to be but I pray that even though it cannot be that the kids will recognize the importance of being all they can be with their husbands and wife. I pray hat the closeness they will share and the gentleness they give and the friendship they share and the total commitment are the most important action that they will ever do in their entire life. My dream was never met but I pray for the kids and grandkids so that when they die they can look back and say to themselves: well done it was good.
I wonder what I have accomplished in my life. I have the most precious kids but they have their life now so I cant say I have an influence on them now. What have I accomplished? No one will have been affected for the good by my life. How I wish I had been different but now it is too late. The dream will not be and it is hard to have my life end and see so little goodness accomplished. All this sounds like feeling sorry for myself so I wont say it again but it is not pity but the truth. The accomplishments a few years ago while God was using me as I was playing the piano was so amazing. God did greatly use me then and I am truly so grateful that He did.
The carpet is getting cleaned today the living room and hallway. I guess there wont be any new carpet for the rest of the house now. It really does nott matter anyway though.
J came over with her little boy, M., today. I surely hope she and the vet will take my Moluccan and use her to teach children. That would please me so much.
Everyone has to die sometime. There is no promise of length of years. It will be good to see my Dad again and my grandmother. Just think I will also see JS again. She and my friends gave me a beautiful finch many years ago for my birthday. Never would I have imagined that the love for birds would grow so much. I wonder what she is doing in heaven now. Isn'tt it silly to be so scared and squeamish and upset about all the treatment and possible hurts and not be afraid to die? I have to have gas just to go to the dentist to have my teeth cleaned which is so weird since the dentist really doesnt hurt just for teeth cleaning! I dont know why its like that. Here I am a 55-year-old baby. Where are the shoulders to cry on and the breast to nestle into? Who can I tell about this and not have it be sounding so stupid and really so selfish. I should be the perfect Christian that has nothing to fear. I wonder if daddy was afraid. He probably was not. He probably felt his responsibility to his church as a preacher so he may never have shown his emotions. Hopefully I can be that way on the outside and maybe know one will know.
This just makes me so angry. Where was the reason to have lived these past 20 years? I walked toward a dream and now it wont be. Yet, I am so glad to have had the dream even though it was not fulfilled. I am not sorry for the dream. I am sorry I did not take better care of it during many of the years.
I will take a nap now. I just cant say some of the things will have to wait until tomorrow.
Today is the day I go to the Oncologist. Im afraid and yet at the same time I will be glad to get all this started. My insides feel cold and stopped up like I still wont be able to cry. Its just so unreal. Even watching Sharon cook and sit and watch TV here is like a dream that is not true. Im just watching with no feelings everything that is going on around me. So weird! The carpet was cleaned yesterday and even that was like dream. Well, now the carpet looks much better and when I have Chemo I wont have to look at a dirty carpet in the living-room.
Now I know. Chemo will begin on Monday Nov.23, 1998. Dr. V. will do the surgery on Mon. to place the port-a-cath. It will be used to put the chemicals Cytoxon, Adriamyicin and Taxol. I will loose all my body hair and be sick but I am so scared. After that there will possibly by a bone marrow transplant if another Dr. agrees with Dr. S. After that there will be Radiation and then 5 years of tamoxafin. I feel so trapped! Cant run away because there will be certain death and dont want to take the treatment because there may be death sooner. Just so trapped!
November 21, 1998
Had so many tests and things to do since the Oncologist appointment. Just so tired! At least Ive not had to take any pain medicine today and that is good. I feel much better today than yesterday. I thought I was going to drop from exhaustion last night yesterday was the worst day and night since being out of the hospital after the mastectomy.
Im glad that my sister has been here. She is in the house but I dont feel like I cant move around in the house she is just giving moral support for this time and it has been very helpful. Normally I do not like others around when I dont feel good but she is here and at the same time not. Im glad I got to see her at least one more time before I die.
November 22, 1998
Today Mr. is taking the things to his mom that she will need in the nursing home. That makes me sad to know that I could not take care of her. I realize that even though I hate nursing homes that I can not take care of her my emotional state as well as physical state can not handle it. F. called yesterday to see if they could come over. They will come over after lunch today. She said they might come Monday at the hospital also. That is hard.
I got an email from A. the other day and he said that the planned treatment seemed like an appropriate plan. I dreamed RT died. Probably since he is so sick and he has had a bone marrow transplant.
My back is not hurting as bad tonight. I drank cranberry juice often yesterday so incase it is the kidneys that are getting infected they might be flushed out and be ok. The inside of my vagina is really raw it was bleeding yesterday so it is going to be hard again without having any estrogen to keep that from happening. I washed it often with vinegar water and that will help heal it. Maybe the Dr. can prescribe something that will make it not so raw.
At least D. will not be there on Mon. I have tried not to let on how serious it is on Mon. so he wont come. My sister and daughter will be there and that is enough people. I am afraid for Monday to get here because it may be the last time I get to see anyone. It may the last time I get to see the possibility of my dream yet I know that dream will not be so that makes me so sad. I dont want to cry and be seen to be afraid. That will not be a good gift to leave in their eyes. There are many people who go through all of this and come out just fine so why should I be any different? Maybe it is just that there are so many things that can go wrong and it is a very dangerous thing yet it is much less dangerous than the cancer so it must be done in order to try to live longer.
Well, the day went by. My friends came over this afternoon. We all played on the computers (all three of them.
Now it is only 25 more min. until I cant have anything to eat or drink in preparation for the surgery tomorrow. It feels like I am on death row awaiting the last min. of life.
Now I go. Maybe I will just run away.
Well, I didnt die yet but for a while there I thought I would I felt so sick. The surgery was ok until the recovery room. It felt like someone was stabbing me in my side from the back and it extended down to my waist every time I took a breath. They took x-rays and all was ok. The Dr. said it was probably irritated nerves. They increased the morphine and it subsided. It was that night before it completely quit feeling like that. B stayed most of the day at the hospital. That was so nice of her to do especially since she has H to take care of constantly. S was there all day and one of my daughters came for part of the day. I felt so sorry for S... She was so sick with a sinus infection and just barely made it to the hospital before she had to go to the bathroom and throw-up. D came for a few min about 4:30. A minister from the church came for a few min. also. Another friend came about 5 or so and visited a bit until supper arrived. The nurse came a bit later and taught some more about the chemo. My stomach was getting very sick, from nerves I think, anticipating the chemo. Chemotherapy started at 9 PM and finished about 11 PM. About 3 AM I started getting really nauseated and about 6 they gave me some more nausea med. I felt awful all day and could not eat anything at all. They released me at about 3 PM and was home by 3:30. Went straight to bed!
The next day I was nauseated all day. My sister left about 8 AM.
Mr went to get a Christmas tree and my daughter came after work and decorated the tree.
Thanksgiving all the children and their families came over about 11AM. They cooked lunch and we ate about 2 PM. It was a very nice and delicious Thanksgiving meal. I did not feel good all day. The noise was hard to handle and my stomach kept rolling from feeling ok to being sick. I was so tired that I didnt think I would make it but I did.
Friday was the same very tiring. The kids went to NO and shopped. I wished I could have baby sat but just couldnt. My nerves feel on edge when there is much noise and the kids of course are noisy. I had a queasy stomach all day again and was extremely tired. I wonder what makes me so tired. I would have thought that by now I would feel better its been 4 days since getting the chemicals.
Today, Saturday, I woke up feeling a little bit less tired I feel so sad today cant seem to quit crying.
November 29, 1998
Well, I know why I feel so sad I know that my older daughter will always be gone and it makes me so sad. There is so little communication and understanding and I just cant figure out why. At least I got to see her. I love her because she is my daughter but I wonder why it is like it is. I feel like giving up.
Ate Turkey and dressing again and it as good but I think the spice in the gravy burned my throat. It was not really hot but because of the chemotherapy my throat is very sensitive as well as is my stomach. I think this was the best Thanksgiving meal weve ever had.
I have some little bumps on my stomach from mosquito bites last Sunday. They seem to have spread and made more bumps so I wonder what it is. Ill ask the Dr. about it Wednesday at my appointment.
J. called last night and asked to bring a fruit basket over on Mon. That is so thoughtful. Sweets dont sound good but fruit does.
December 3, 1998
Went to my Dr. appt. yesterday for the blood work and the CAT scan results. The CAT scan showed something in the liver so had to have an ultrasound, which was negative. But, the CAT scan showed several small spots in the brain. A MRI will be done as soon as the 8 weeks are up since having the port-a-cath put in my chest. He also said that my blood count was very low (1700 which should be between 4300 and 10,000) so now I cant go anywhere. I also have Shingles! Thats what those little bumps were. Oh well, I guess one more thing wont really matter.
I feel so sad I look at the Christmas tree and wonder if it will be the last one. I look at Litany and wonder how she will feel when I die and it makes me sad. I think about the dream and get so sad because once I die then life just goes on its like water all around and I only take up space. When I die then the water will fill up the space and the memories will be gone and there will be no more dream and not even a hole left where I once was.
I cried so hard this afternoon first time I have ever cried so hard for one of my pet birds. I gave my Umbrella cockatoo to a family to breed him. I was afraid that if I die or the chemo gets worse that I wont be able to take care of him like he needs. No one else can handle him. It just makes me so sad because I am so attached to him. He would lay his little head on me and just cuddle so sweet. I will greatly miss him the only other time I ever missed a bird like this was when I traded Kiwi for Blaze. I just feel so sad. I just couldnt die and worry that he would just is a forgotten and neglected bird. This way he will have a great rest of his life making babies.
Today I spent cleaning the birds cages. A cat adopted me yesterday because I had rescued it from some dogs. It stayed on the back porch all night and then the dogs chased it up a tree. I ran them off and the cat meowed its way all the way down the tree. I put him in the garage. Sure do wish I could keep him but I think Mr would kill him if I tried to keep him he hates cats. J from the vet where I used to work said that they would take him and someone would adopt him. He is a precious and cuddly cat and will make someone a great and beautiful pet. The only other thing I did all day was unload the dishwasher. Oh yes, and I washed two loads of clothes but I am so tired I can hardly move. If I were anymore tired I would not be able to get out of bed at all. Hopefully I can sleep tonight without a sleeping pill.
Had a miserable night tossed and turned. My left side below my chest and above the waist hurts so bad especially when laying on it. I have a sore throat and my jaw yesterday felt like I was getting an abscess. I used some Listerine mouthwash to stop it and it seems to have made it a bit better boy does the mouthwash sting my mouth though. I just got up and took my temperature and it is 101 so I will have to call the Dr. today. Still so tired I get out of breath just taking Litany to the bathroom.
December 12, 1998
I just arrived back home Friday after being in the hospital since Monday morning. It was a very scary time. I could have died in a few hours. It was so strange because I did not know I was as sick as I was. The Dr. just said to go to the emergency room on Monday when I called him. So I thought I would get some blood taken and then an antibiotic for the fever and go home. Instead all these Drs were called in and I was put on huge amounts of various antibiotics and the Drs. all were worried and said it was a life threatening situation because the white count was so very low that I had no way to fight any kind of infection. They even had to wear masks and gloves and limit visitors. I felt worse than I can ever remember on Tuesday. I hardly knew anyone when they would come. All I could think of was one thing and it made me so sad no time for good byes. No one other than the Dr. knew how sick I was. I tried to keep it from everyone so no one would worry. I almost died alone and that was very scary too. Being alone is the worst part. There is just no one to tell. There is no one who will understand. It is either too hard for others to accept or they say things like "you will be ok" or "God has a plan"or "just keep having faith". They just dont know how shallow those words sound. I need someone who will sit with my heart and cry over the lose with me. But, that is not to be. Well, now the white count is up to normal and I will take the second Chemo treatment on Monday morning after a blood test.
It feels like I will not live very long. Maybe it's because my dream is gone and there is such a sense of loss that it almost feels like there is no use to even go on. Without the dream it is hard to wake up each day and face the Chemo and the tiredness and the sadness and no ability to play the piano anymore and no breast and no hair and nothing to have at the end of the years. It sounds like I am complaining and feeling sorry for myself so I wont tell anyone. I will cry in the bathroom so no one will know. It is just so hard to wake up and think. Well, today is a day at least but I know that if I can keep my mind on the things that mean most in the day that it wont be so bad. But, others have their life to live and they will go on with living. They cant stop and just be there just because of me. They will have work to do that is important and it will go on. Life will go on and there won't even be a notice that I was here. I wonder who will remember even in one year from now. That is so sad. Oh well, it doesnt matter. That is just the way life and death is I guess. I wonder if I will get to see the new baby next year.
My friends came over Friday night and brought some sushi. It tasted so good. I look at them and know that their life will go on and they will work and play and live. Their house will be finished and their children will get married someday and they will have grandchildren. They will play with them and nurture them and be so proud of them. She will sit by his bed or he will sit by her bed when they die at the end of life. Life will have a reality for them even unto old age. The dreams they had together will be realized.
So much would have been different but there is no chance now and no time left for any change anyway. If I can just be glad for what days I have left maybe I wont feel such a sorrow. There is just such a heavy sorrow and I cant seem to get rid of it. How I wish there was someone to hear with understanding.
Well, most of my hair is gone now. It is easy to joke about it with others but on the inside it really hurts bad. The cancer is so ugly, the feelings of sadness are so overwhelming and now the body is so terribly ugly with no breast and no hair.
The Dr. said to wait for a few more days to see my granddaughter again. That is even hard. I hope she grows up to be like her mom. Her parents will be so proud of her if she is even just a little like her mom. She is so gentle and kind. She is so intelligent and knows how to use her head with maturity. I would have liked to have been like she is. It is amazing that someone like that could have come out of someone like me. How lucky can a mother be?
J. at the Vets has been so kind during this time. She has made such an effort to show her care. I have really appreciated that.
My mom and dad and brother and his wife came last night and will stay until after my Chemo tomorrow. It was so good to see them but also so hard. It feels like I wont get to see anyone after this year but that may just be because all this is so sad and scary. I wish I could run away. It seems like there is no reason to even live because my dream has been taken away and several years ago the joy of playing the piano was taken away. Now my hair is gone and there is only one breast I am so ugly. Maybe if I can just keep from crying then I wont feel the pain of lose and besides what difference does it make anyway. If I cry or complain it can only be seen as whining and not being positive so I will not cry and no one will know.
December 14, 1998
I had horrible nightmares during the night. The same man was trying to hurt me each time I went to sleep. The last time he even cut the phone lines and was trying to get in when I woke up.
T M Mom and Dad went with me to the Dr. and to the Chemo. today. It was scary today but all went well. The Dr. changed the nausea medicine and so far it seems to be working. There is only a small tinge of nausea much better than last time! I have to go to the Dr. tomorrow exactly at 2:45 in order to take a new drug that hopefully will stimulate the Neutrofills to grow so that the White count doesnt get so dangerously low this time. The injection will be given everyday for 7 up to 10 days and then it will be stopped with the count hopefully 2x more than is needed since it will fall to half that when the injections are stopped. I feel very tired right now so maybe it will be easier to sleep tonight.
December 15, 1998
Did not sleep at all last night tried to keep my eyes closed but finally got on the computer at about 4:30AM. I feel very tired today and tonight. Took the first Nuprogen shot today (1st in a series of 7 to days).
December 16, 1998
Had second shot. I feel terrible today.
December 18, 1998
Very tired today. My heart just hurts beyond words. Maybe I just ought to forget about it and accept this cancer.
December 20, 1998
I am so happy today my daughter called! She even said that maybe we could go to her house on Christmas Eve. It is like a miracle because she really called. I cry for the joy of it.
December 21, 1998
Went to the Dr. today for the Nuprogen shot and a blood test. The White count is extremely low, 0.9, and he was hoping it would be over 10.0 by now. I go back to the Dr. for another blood test on Wed. to see if it has come up and whether I can go to my daughters for Christmas. Im afraid again because if it doesnt come up and then when I have to go off the shot it will go so extremely low. Besides, I want to go to the gulf coast Mon. for the free room at a motel and to get away from all this oh, well Ill try not to be so scared.
December 22, 1998
Went back to the Dr. for another blood test and the count is up to 1.5 today so that is good. Ill go back tomorrow and have another test so hopefully it has come up very far this time.
December 23, 1998
My back hurt so badly during the night that I finally took a pain pill and after an hour or so it finally quit hurting so badly. Now it is almost 5:30 so time to get up cant sleep anyway because the med. makes me hyper.
December 23, 1998
I went to the Dr. and the Nuprogen shot is working. The white count is up to 13,000 today so only one more shot for this time. I get to have Christmas!
December 24, 1998
Well, its Christmas Eve I just wish oh well no use wishing. Cant sleep still very hyper so finally took a sleeping pill since if I dont sleep it will be the second night in a row.
January 14, 1999
I have not written for a long time so will add a little bit this morning since I cant sleep again. On Jan. 4, 1998 I took the last of the first set of Chemo. My sister was here and stayed until yesterday morning. When I went to the Dr. that morning for the blood test before chemo the white count and red blood cell counts were so low that after having the chemo I had to have a blood transfusion of 2 units of blood. We did not get back home until almost 11 PM. It was a very long day from 10 AM until that night! Mon. Jan. 12 I had another blood test and the white count was only 1.0 and the red count is still low but not as low as the day of transfusion. Then had another blood test yesterday and the white count had come up to 5.0. The Dr. will give the Nuprogen injections through Sun. and then I will have another blood test on Mon. to check the count again. The Dr. also referred me to a bone marrow transplant Dr. to begin that process. It is so scary. I just want to run away. Where can I go? Who can I tell? What do I do? Please someone listen. But, there is no one to listen. When I try to express the feelings the persons eyes betray them and I can see they dont understand. It is so lonely here.
Went to NO with my friends for sushi. The sushi was very good. I so seldom I get to do anything without others trying to keep me from doing it these days. Sometimes I think they think I am already dead.
January 23, 1999
My brother and his wife came today to go with me Monday to the Chemo. It is so good to see them again.
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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