In October of 1998 I was diagnosed with breast cancer. My first initial reaction was I was going to die very soon. My second reaction was to cut off the offending breast. These reactions lasted for some days until I finally began to calm down enough to be a little more intelligent about the decisions I had facing me.
I purchased many books on breast cancer, picked up any and all free pamphlets, talked with those that had fought the battle and most of all checked the internet where I found all kinds of information. Then I studied everything, talked to my GP, surgeon, radiologist and an oncologist. Learn that name, oncologist, they are who you should seek out. Then I made my own decisions as to where to proceed from here. This is another thing that anyone diagnosed must do. They have to be the one to make the decision. Each Doctor will have their specialty and each wants to of course afford you their specialty. Listen to all but in the end make the decision on your own.
In my case I looked at the odds between mastectomy and radiation. The odds of survival were/are exactly the same. I had already had a lumpectomy so surgery again to check the lymph nodes to see how many if any were involved. Seventeen were removed and I had six nodes that were diagnosed as cancerous. So besides the radiation I opted for, I also had to add chemotherapy to the list.
At this writing I am still undergoing therapy. Why am I putting this here? I hope that there are some of you out there that are looking for someone to talk to, if so I am here. I also want to put things here to show you that you don't have to be down in the dumps so to speak while going through this. Strange as it may sound, you can still have fun!
One of the things I learned in my search is that most of the discussion pages and information pages on breast cancer were very depressing. Well, I am not depressed and I'd rather not be made to feel that way if it's all the same to you. This is going to be my page and I am going to use it as my diary and so far I haven't had any reason to be down about what is happening to me. With that I begin my journey through breast cancer.
In September I decided I'd sat around on my behind long enough while my husband, Jerry was spending all of his time remodeling and adding to our home. I told him I was going to be his helper as much as I could. We then began to build a deck onto the house. It was during this time I noticed that part of my left breast seemed to be discolored, almost bruised looking. I already had an appointment with my doctor, so while I was there I mentioned it. He examined the breast and said he couldn't figure out what it was and suggested I have another doctor look at it. He took me down to the surgeons office and we made an appointment for the next day. The surgeon also examined the area and with his head shaking said that if I was a nursing mother he might say that was the cause. He then suggested we do a couple of biopsies in that area. He also noticed the lump I'd had for years and obviously noted that it was painful to the touch. He said he could remove it if I wanted. I said why not, it had always hurt. Surgery was scheduled and performed the following week. Results to be in Thursday, Friday at the latest. Thursday came and went with no word. I called Friday and was told no word. Monday only part of the biopsies were back, the smaller ones and they were negative. Tuesday I got a call asking me to come in, the doctor wanted to talk to me. I knew at that moment why. As my husband walked in the room I began to cry and told him that I knew I had breast cancer. He didn't even try to talk me out of feeling that way, as we'd been around too many doctors and too many tests to know that when they want to see you it's not going to be good news. I cried most of the way to town (we live 11 miles from the hospital). Upon arrival, one look at the nurses faces told me I was right in my thinking. Everyone, who had always been nice, was even nicer and very quiet. The doctor came in and gave me the news as gently as possible. He explained all of the options, which of course I heard about one quarter to one half of, Jerry later said he'd heard about the same. Between us I think we agreed that we didn't hear everything. My son, after being told said he had been through this with some of his sister-in-laws and told me to bring a tape recorder when visiting the doctors as he guaranteed that I would not hear or remember everything. The doctor suggested a note book, which in the beginning I did carry. He also gave me a book on breast cancer which I read from cover to cover. It served to depress me even more as it seemed that most of the cases started with a lumpectomy then having to have the mastectomy later anyway, with a lot of those not making the survival list. Since he was a surgeon he explained what the procedures would be with choices of either simply removing the nodes or doing the mastectomy. He wanted me to talk to both a radiologist and oncologist before I made any decisions. As I said in the beginning, I was more than leaning toward cutting the darn thing right off, I was almost ready to do the job myself.
The surgeon made an appointment with the radiologist for me. While I waited I went to bookstores all over and purchased a book that a cyber friend recommended and one that I found looked quite interesting on chemotherapy and radiation treatments, what they're all about, side effects, etc. I also bought one on after survival just to keep my spirits up. For those interested they are: "Choices" by Marion Morra & Eve Potts, this was recommended to me by my cyber friend Midge who has held my hand through all of this, both she and her husband had cancer and used this as their bible, I highly recommend it for any type of cancer patient; "The Chemotherapy & Radiation Therapy Survival Guide" by Judith McKay and Nancee Hirano, I have really read this from cover to cover and still go in it to look back over information when ever something different comes up with me; "Living Beyond Breast Cancer" by Marisa Weiss and Ellen Weiss, I figured I needed this because it is as the second title infers, "A Survivor's Guide For When Treatment Ends And The Rest Of Your Life Begins." You also do not have to spend a fortune on books, there are so many good pamphlets available that don't cost a penny.
I was of two minds in how I felt about telling my family. One was that I wanted everyone to know, the other was dreading their reactions. All had been informed earlier of the surgery so they were awaiting final results. Three of my children were on the internet so were told via email. It was easier for me to deal with words than voices. The first phone call I placed was to my mother. My sister answered and I told her. It was the first time I spoke the words out loud. I actually had to say I've been diagnosed with breast cancer. That was about all I could say before I began crying. I also kept apologizing for crying. One of those golden moments when big sisters really come in handy. She just let me get it out. We talked a bit more, both agreeing I was in no shape to talk to my mother. She said she'd have her call me later. I then placed a call to the son who was not on the internet. He took it very well, or at least he seemed to, which helped me to no end stay on an even keel. Later that evening my mother called back and we talked for some time. In time I had talked to all of my children, two I noted took it fairly well, two were definitely having a problem with it. I did however make it through the whole day and survive.
This might be a place to interject the lump situation. I had that lump for years. I also had yearly mammograms and in fact had been having them every six months for the past two years since I'd changed doctors. The lump never changed and was not the shape that cancerous tumors are normally found to be. All in all I figured out that at least four different doctors and I don't know how many radiologists had been examining my mammograms over the years and all said the same thing, everything was okay! We did finally figure out what caused the breast discoloration as I almost did it again. When I helped build the deck I was using my breast as an extra "holder" for balancing the sixteen foot 2x8's we were using for joists as I went up the ladder. So in the end I have the deck to thank for saving my life as well as a nice place to recuperate when I'm tired.
I went and saw the radiologist. Once again, questions and examinations were the order of the day. Once again I ended up in tears as I listened to all the options. I was to put it mildly scared to death. Everything sounded so very scary, words I couldn't understand were bandied about. Then things started to make sense to me. Everything I'd read began to fall into place as the radiologist was talking. By the time I left there I had a much better idea of what was going on and where I was going. What thrilled me was that Jerry also had the same feelings. I went back to the surgeon and told him of my decision. I was opting for radiology treatments and not a mastectomy. He then scheduled surgery to remove some of my lymph nodes. This was done and we awaited word on how involved the nodes were if at all. Once again the doctors were shocked, they had expected maybe one or two, but in all six were found to be cancerous. Once again I felt like I was sucker punched. This time however, I didn't stay down for long. I had decided that I'd heard the worse long ago, now was time to take care of business and get this over with.
My next appointment was with the oncologist who had been out of town while all the former was going on. He had looked over all my records and reports. I knew from what I read and what the surgeon said, chemo had to be added to my treatment. He suggested that we do six doses of chemotherapy then six weeks of radiation then another six doses of chemo. I use the word suggested tongue in cheek, he has a way of suggesting that I've often wondered what he would do if I said I don't agree. Then things really began to roll. I was scheduled for all sorts of tests. mri, cat scan, stress tests, blood work ups. Oh such fun. All in all I came out as testing pretty healthy. The oncologist was very pleased as he wanted to be what he called aggressive in my treatment. We then scheduled my first chemo.
As you can well imagine, I did not sleep much the night before my chemo. The nurse who normally would have given it, Marsha was not available to do it, I then found that the nurse I had for both surgeries, Pat, would be administering it. I could go on and on about the abilities, caring and kindness of these two, suffice to say they are two very special people. Back to the task. I did find that it would take some time to go through all this so I sent Jerry home. Pat hooked me all up and explained everything as she did so. First your system is sort of flushed out, then anti-nausea medication among other things is put in, then the chemo. Would you believe I was asleep when she came in to put the chemo in and didn't wake up until it was basically over. Talk about relaxed! Obviously I was shocked and surprised at what I had just gone through. After I more washed out then tired. I did eat lightly as I wasn't sure just what would happen. I have been given anti-nausea medication and told to drink liquids like there was no tomorrow. Well, I opted for a cranberry and other fruit mixed drink which I soon learned should not be the drink of choice. It sent me into diarrhea big time, so big that I was embarrassed that I didn't make it at one time. As I was cleaning myself and my clothing up I came to the conclusion that I didn't have to be embarrassed about anything! First of all, there was no one there except for Jerry and he would've even helped if he could, secondly this was fight the disease time and all stops were going to be pulled for that battle! I decided then and there I was going to concentrate on getting through and over this and not apologize for anything that it caused. Course I did find out that it was the juice I chose and not a reaction. Oh well, live and learn. The doctor had told me that in a couple of weeks my hair would fall out, he looked me right in the eye and said "and I do mean all you hair!" Well, all the books I'd read said three weeks, which I thought was interesting since that would put it at Christmas eve. The books were right, on Christmas eve I noticed I was shedding!! The next day being Christmas and with my eldest son and family coming I donned a Santa hat that I had picked up just for that occasion. I figured better cute than balding!! The funny part of it was that we'd gone to my mother-in-laws later in the day to visit all who were there and many just figured I had the hat on because of being just me and not because of any hair loss. It definitely helps to be a bit different than the rest of the family members!!
||Although not a good copy, you can get of view of two of me. One with and one without!!!|
Time came for the second chemo. Before each chemo a blood test is necessary to see how your red and white counts are doing. Marsha explained all of this to me and said, it normally doesn't happen but we do have to make sure. Well, it happened so my second chemo was postponed because my white counts were low. There is medication for it, but my doctor opted to wait a week and allow time for the level to come up naturally, which it did. The second chemo went pretty much as the first only I stayed awake because I had another chemo patient to visit with. After arriving home I was once again okay, this time I chose water and apricot nectar to drink and was just fine. I did notice that when I did feel a bit queasy a couple of days later I simply filled a large plastic glass with ice water, put a lid on it, put a straw thru the hole and sucked at it all day. Felt just fine. It took me maybe two days to get back to feeling fairly normal.
I thought I might stand in for Mr. Clean and be Mrs. Clean, then I thought no, I'm not all that good at cleaning, Ms Tidy sounds much better!!!
MS TIDY PACKER FAN 1999,
The third chemo went off on schedule. The results were also the same only it took me an extra day, three, to get back to feeling okay. By okay I mean just not real tired when you get done doing normal work that you don't get tired doing.
My fourth chemo, at this writing is scheduled in a couple of days. I just saw the oncologist and had a blood test that showed my white count is once again low. We've all got our fingers crossed that they'll be high enough to complete the fourth go around.
Everyone I talk to , nurses, doctors, friends, acquaintances and people I meet on the street, in shops, etc. all tell me I have a great attitude, I'm brave, courageous, etc. I personally don't know what other attitude to have. My favorite saying is, I'm not sick, I'm diseased! I know that what cancer was in me according to my surgeon is lying in state in a file cabinet in Beaver Dam, Wisconsin. This treatment is to hopefully make sure it doesn't come back, in other words I'm being given medicine for something wrong, just as I would take a headache potion for a headache or cough medicine for a cold. Yes, things are happening to irritate me, such as I had a sore on the side of my tongue that drove me nuts for a while, I have one right now on the tip of my tongue that is worse than the first sore. So what, I've had canker sores, etc. before and made it through those. I get tired more, so what, I'll go lay down! Course I realize that many can't have that choice, I am fortunate that there is only two of us here and Jerry treats me like I'm a precious jewel! He always did so that's nothing different. Yes, I know there is a great possibility that the cancer may reoccur, that is still may be in me at some so very small level that no tests could see it. Okay, what's the worse thing that can happen, I die. I'm not even afraid of that. I do not however intend to just give up and wait as that could be a very long time and I have things to do, places to go and people to see. My life is not over and so I continue it as I did before only just a little more aware of how precious it is. Like everything else I've done, I've jumped into this over my head and decided to treat it as yet another one of my great adventures.
Would you believe that the Look Good Feel Good Program at the University of Wisconsin Hospital gave me this wig along with two scarves. It's a wonderful program made up of volunteers.
I have to at this point mention so many people that have helped me in this adventure. My family of course are being their usually warm caring selves. I have only to ask and they would deliver!! Families are very important, hugs and kisses are so neat! I have found myself getting cards and letters from members that I normally only hear from at Christmas time. It's so nice to go out to get the mail and find a card sent from out of the blue! My cyber friends are the shocker. I got hooked on a personal discussion page after one of the posters on my soap opera page invited me to look them over, she said she felt I could fit right in. This was in May or June of last year, I posted replies a bit but vacation and travel began. Upon my return I really got involved in knowing these people. They are from all walks of life and the only thing we all had in common was we all watched Days of Our Lives, or DOOL more commonly known by us soap opera nuts. I had never posted many topics on the DOOL Board simply because there were so many others much more interesting than I could be so I chose mainly to post replies. This topic however I felt worth mentioning, especially since October was Breast Cancer Month. So I posted the topic as such and added I was made aware, I have it. Needless to say the outpouring of love, affection, prayers, cyber hugs, vibes etc. had me reeling. All I could think was, these people don't even know me, yet they all care so deeply. Since that day I have even received things in the mail from them which makes my heart simply overflow with gratitude and love. So far I have not met one of these great guys although I'm making arrangements to hopefully start in the very near future. I've been to boards that specialize in cancers, some more specifically breast cancer but I find these boards very depressing, it's like a big club that we all have to belong to and pass around how we don't feel well. The DOOL Board keeps my spirits up, they make me laugh and in turn that makes me want to reciprocate and keep their spirits up. I guess what I'm trying to say is stay away from Boards that depress you, you can do that all by yourself, you surely don't need help. Latch on to happy people and happy things and look ahead not down!
Now this next is going to need some background and deals specifically with the great group I talked about above from the DOOL Board. One of the gals is an actress, she was involved recently in making a movie with Richard Gere and Julia Roberts, entitled Runaway Bride, (Release date hopefully the end of July 1999, Don't Miss it}) I was at the time of the filming wondering what I should do when I got bald, but one wig, many, what colors, etc. Everyone was great about advice, but Theda Bera went one step further and sent me a picture of her and Richard with hairstyles to die for.
I told them I'd make a choice and here it is:
For those of you not in the know, Richard's color was used along with the a bow like Theda Bera had and her BIG hair
Time to play catch up. I have had not only my fourth chemo, but also my fifth. The fourth was the same as the first three, only difference was it took four days to really start feeling back to normal. Seems like it's one day added for each chemo. I saw the oncologist after the fourth chemo, he told me we would be changing the formula and it wouldn't be so rough. Now that worried me as I didn't think it'd been so rough. Once again though, my white blood count was low so we had to put it off again.
In the meantime I made myself some really bright colored scarves to wear, I find them much more comfortable and fashionable than turbans and though I love wigs they get really hot. Hats are neat and my second favorite thing to wear.
My fifth chemo was very different, I had to take steroids twelve hours before and again six hours before. That was fun, the first dose was at 12:30 a.m. and of course I laid awake anticipating what it was going to do to me, got to sleep about 4 a.m. only to have to wake up and take the second dose at 6:30. Time for chemo came. The procedure was suppose to take about three hours, instead it took me four and a half as I got really faint and my mouth was so very dry. The whole procedure was slowed down and at times stopped until I felt better. I was pretty beat afterwards, but not wiped out as in the past. The next day I felt fine, just a little tired but okay. So it wasn't as rough as the first four.
Well, that's the last time I'll say it wasn't as rough without waiting. Three days after the fifth chemo I thought there wasn't a part of my body that didn't hurt. I had my sixth chemo today, it went very smooth and I also got less steroids this time in order to make it easier to take without being light headed. Course it lasted for six hours but I got to watch my soaps and get these pictures ready for this page. So I look at the good side.
I've now had a total of eight chemo treatments. As with numbers five and six, these last two had to be given slowly. Taking five to six hours each. I did continue to ache, especially in my legs, but did have something to take to ease it a bit. The aches didn't last for more than a week so nothing I couldn't handle. The fun part of this last series was the day after I was so hyped up I got lots of work done so by the time the aching legs began I was pretty much caught up.
I now begin radiation.
|Most Chemo patients will recognize the scarf, Jerry told me he used to see women wearing them and thought they belonged to some kind of cult. I tried to look like a cult member but he said I'm too fashionable.||
Taking the scarf on the left, I used it as a pattern and made others, mostly brighter colors and of course Shamrocks for St. Paddy's Day!!!
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