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The Journey ... Summer of Hope

 

  "...I carried you on eagles' wings..."Ex. 19:4

   

 

October 13,1998

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.

October 19,1998

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.

October 20,1998

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.

October 23,1998

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 can’t relax. I have not told the kids etc. yet and won’t 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 not’t… 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.

October 26,1998

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…it’s 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 don’t 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 don’t want to make her have a sad day. I really don’t want to tell anyone at all. When I go to the hospital for the surgery to remove the lump I won’t tell anyone …just too much fuss. I certainly don’t 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 don’t know if I can handle the "worry" from Mrs... during the recovery period. Oh well, I guess I won’t think about that either right now. My stomach is getting upset again.

It’s only 11 o’clock 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.

October 27,1998

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. I’m 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. It’s 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 it’s 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 don’t 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 patient’s 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 won’t 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 don’t  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.

October 28.1998

Well, I just don’t 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. I’m 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 don’t think I can handle her dementia, which is probably from Alzheimer’s disease and my cancer at the same time.

October30, 1998

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 not’t 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 can’t 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…it’s the emotional part of her care that I’m 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. It’s my fault it’s 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 don’t 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 don’t 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 I’m 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…can’t 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.

October 31,1998

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.

November 1,1998

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, it’s getting closer to the time to go to Mayo on Tues. I’m 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. I’ll decide that after the evaluation.

It feels like nasty worms are crawling in my body and growing! I’ll be glad to get this lump out!

I’m 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.

I’m 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.

November 4,1998

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.

November 5,1998

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.

November 6,1998

Well, today is the day for surgery. I go to St. Mary’s 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.

November 8,1998

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 can’t 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 can’t 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! I’m trying not to cry and only did 2 times so far. I try to think it is just another thing to learn about. I can’t 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.

November 11,1998

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. I’m 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 can’t 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 can’t sit still. It is so hard to sleep. I go to sleep but I can’t 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 don’t want to for it will be so lonely without them but I don’t 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 won’t 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.

I’m trying so hard to not think that this cancer belongs to me. It’s getting harder to do that especially since I read the cover letter from Dr.  Mayo Clinic surgeon, to Dr. S. It’s 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.

November 15,1998

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 don’t know because I don’t want to and then sometimes I do want to…it’s just so hard!

Went to the Dr. on Friday but he did not remove the tubes yet…will Mon. instead if all goes well.

November 16,1998

Hopefully I will get the tubes out today. It’s a bit scary since he probably won’t 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 God’s 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.

November 17,1998

Well, tomorrow is the day for the Oncologist visit. It’s 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. It’s like the other ones will get their desires met but I won’t.  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 don’t 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 won’t 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 won’t be any new carpet for the rest of the house now. It really does not’t 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't’t 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 doesn’t hurt just for teeth cleaning! I don’t know why it’s 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 won’t 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 can’t say some of the things…will have to wait until tomorrow.

November 18,1998

Today is the day I go to the Oncologist. I’m 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. It’s just so unreal. Even watching Sharon cook and sit and watch TV here is like a dream that is not true. I’m 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! Can’t run away because there will be certain death and don’t 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 I’ve 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.

I’m glad that my sister  has been here. She is in the house but I don’t feel like I can’t 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 don’t feel good but she is here and at the same time not. I’m 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 won’t 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 don’t 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 can’t 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.

November 23,1998

Now I go.  Maybe I will just run away.

November 28,1998

Well, I didn’t 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 didn’t 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 couldn’t. 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…it’s been 4 days since getting the chemicals.

Today, Saturday, I woke up feeling a little bit less tired I feel so sad today…can’t 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 can’t 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 we’ve 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. I’ll 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 don’t 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 can’t go anywhere. I also have Shingles! That’s what those little bumps were. Oh well, I guess one more thing won’t 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…it’s 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.

December 4,1998

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 won’t 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 couldn’t 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.

December 5,1998

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.

December 7,1998

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 don’t 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 can’t 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 doesn’t 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 won’t feel such a sorrow. There is just such a heavy sorrow and I can’t 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.

December 13,1998

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 won’t 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 won’t 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 doesn’t 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. I’m afraid again because if it doesn’t 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. I’ll 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 don’t 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 can’t 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 person’s eyes betray them and I can see they don’t understand. It is so lonely here.

January 22,1999

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.

                                                               cont. to page 2

 

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