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Just needed to talk

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

A year ago last October I began bleeding profusely. I had bad periods all my life but recently they had been worse. I had not been to see a dotor regularly as I had some bad experiences with doctors in the past. But on this night when the bleeding didn't stop and I nearly passed out I knew I was in trouble so I drove myself to the emergency room and told the admitting nurses that I thought I was bleeding to death. I was very close and quickly admitted to ICU, given 4 pints of blood while they tried to stop the bleeding, and a nurse sat with me all night as they were afraid because of the loss of blood my heart might fail. By morning they had stopped the bleeding and I had an MRI which showed a large fibroid tumor. The doctor who admitted me the night before was a God-send. She sat on the edge of my bed and told me she had good news and bad. The good news was it was a fibroid tumor and that was the best I could hope for. The bad news was it was huge ( they estimated 10 pounds) and it was laying on my liver and kidneys and they were worried about damage to the organs. The next day they performed a partial hysterectomy. Since they saw no signs of cancer they opted to leave the ovaries. Everything went smoothly and there was no damage to the other organs. Two weeks later as I lay on the table at a follow up appointment my doctor's associate informed me the the pathology had come back and the tumor was mostly fibroid. At that moment he was called out of the room to take a phone call and I lay there for 15 minutes waiting for the rest of the sentence. He returned to tell me that there had been very early signs of endometrial cancer cells involved in the lining of the uterus and they would schedule an appointment with my doctor in two weeks when she returned from vacation to decide what to do. I cried for two weeks. When she returned she scheduled an appointment for me with the cancer clinic at the University of Iowa Hospital and told me that this was by far the best cancer to have because surgery and maybe radistion were a 99% cure.But I was scared. Years ago I watched my grandmother die a horrible death of lung and brain cancer at the U of I. I've been estranged from my family for over 30 years and while I have wonderful friends for the most part I was on my own going through this. My first appointment I sat alone and scared for hours as the doctor was late and when he did arrive I told him I was just about to leave. His response was, "Who's stopping you." He decided that they had to go back in and remove the ovaries and tubes and do biopsies on the lymph nodes. By the time the second surgery was scheduled my family whom I had not wanted to have to deal with on top of all of this were back in my life "wanting to take care of me" but really only concerned that if I had died they would feel guilty. I had the second surgery December 5, 2007. When they opened me back up they found that I had a serious infection in the first surgery which had they not gone back in and found might had killed me. Lucky for the second surgery. They also found out during the usual tests before the surgery that I was diabetic (the doctor who found this out called me and bluntly said, "You're diabetic," and informed me that he really didn't want to be my doctor but if he had to he would. I went to his office and his nurse gave me a bag with a glucose meter and a paper wih a diet plan on it and that was the extent of my diabetic training. My wonderful GYN said she would help me with that and she did her best. 2 days after the 2nd surgery I had a minor stroke with a nurse standing by my bed. Luckily, she ran out of my room and found one of the leading stroke doctors in the world standing there. I was immediately moved to ICU where they began a 3 day procedure to put a stent in my brain. 3 days in which there was an ice storm and no one ( friends or family ) could get to Iowa City and could get no information on what was going on. I went through 3 days of hell totally alone during this procedure in which I had to lay flat on my back and threw up constantly ( apparently that is your brain's response to having a line shoved through the artery in your groin up to your brain and a metal tube placed in a blood vessel.) The day I was brought out of ICU after this ordeal I had a cancer doctor walk into my room and because I was not smiling ( I didn't feel well) he got in my face and told me in front of a half a dozen students that I didn't know how lucky I was and if I didn't he would be happy to take me down the hall and show me some real cancer patients. I was home in time for Christmas. However the doctors and the hospital billing department screwed up paper work so badly that the insurance company cut off my disabiltiy checks and since I had not worked in 3 months by that time I had no money for food or rent or utilities let alone Christmas. The visiting nurse who came in every day to check and dress the wound called Iowa City several times just before Christmas and told them she thought I was getting another infection but they didn't want to do anything so on Christmas day when my temperature started to rise and I got a horrible pain in my stomach I called the doctor on call who said there just wasn't much they could do as it was Christmas and even the pharmacy was closed so I waited until the next morning in terrible pain and called Iowa City again and made an appointment to be seen as soon as possible. I was readmitted for a raging infection and my incision was opened for the 3rd and then 4th time. This time it was decided that it would be packed and let heal that way so it could be watched. I spent NYE in the hospital again alone and New Year's Day a doctor got mad at me because he wanted me to dress the 7 inch hole in my stomach myself after having it oopened 4 times in 3 months and having a stroke. When I told him I couldn't manage it he informed me that he was there on a holiday for the benefit of me and my fellow patients and that I was not very cooperative or appreciative. At that point I was leaving the hospital with or with out his approval. I spent a total of 5 1/2 half months recovering so I could go back to work and while I was lucky that there is little residual from the stroke and I am 1 year cancer free, my disability was cut off 4-5 times during this period because of paperwork snafus. The hospital billed me for the brain stent since the insurance denied it twice and I told them I would pay what I could until it was paid off but I had been off work with no paycheck fo almost 6 months. They finally admitted that they knew the insurance wouldn't pay for it and took the charge off my bill but then a mysterious charge showed up that they turned over to a collection agecy which was calling 5-6 times a day demanding payment. After some investigating I found that not only was it a bill I paid but I had over paid and it was one that the insurance would have covered if the hospital billing department had wriiten the rght refferal code on it.It's been a nightmare What good is surviving if doctors treat you like you are nothing and the hospital billing department screws up your life so badly that you nearly lose everything you had including your mind. I am back to work now but the first thing they informed me was that I had used up my family leave for the year so any doctor's appointments I had to go to would count against me and I was working 60-70 hours a week and not sleeping My family is back out of my life now as I knew they would be and which is why I didn't want them around to begin with. My father is married to a retired nurse who informed him that I couldn't possibly have had a stent put in my brain ( it's a very new procedure which is why the insurance won't pay for it) and he actually called me and told me that it couldn't be done...lovely guy, my dad. And nobody told me that while I am probably the luckiest person I know becuas things certainly could have gone a lot worse, that I would feel guilty for surviving when so many good people I know have not. Every penny extra I make goes to getting myself out of the financial hole this has put me in and all I think of is if I had managed my money better I would have been prepared for this so it's my own fault. I sit and cry because I hear the doctor who told me I didn't know how lucky I was over and over again in my head and think maybe he was right. And I am far from suicidal but I all I can think of is how much easier it would have been if I had just died that night. I know that someday I will get over this but right now it is just hard. I feel so worthless and tired and all I do is cry. I'm not asking for advice or sympathy or anything, I just wanted to talk .....

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

You've been through so much; I couldn't ignore your post. I just want to give you a big cyber hug, and let you know that all you feel is justified and okay and you wouldn't be human not to get tired of it all once in awhile.

Every oncologist I deal with INSISTS on optimism and determination, and would be quick to show their disapproval of anything less. Most of the time I rise to their expectations, as I am an optimist by nature. But I acknowledge for you the strain of slapping on "the brave face" 24/7. ((((RainyJane))))) Come back here if you need to talk it out, anytime. I'll be here for you.

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

Thank you so much. I feel so guilty. What have I to be depressed about? I survived and survived relatively unscathed considering everything that could have gone wrong. But depression isn't always logical. I'll get through it eventually. Thanks for listening and the cyber hug which really is almost as good as the real thing.

I had always tried to remain optimistic throughout everything I had gone through...at least when other people were around. When I came out of the second surgery and they told me they had had to cut away a lot of infected tissue from the first surgery I joked about finally getting the tummy tuck I wanted. Even when I had the stroke and my right hand was useless, they asked if I was right handed and I said yes...so I know this won't last long I can't do anything without my right hand...I'll be back in no time ( and I was )...they said , "Wow, most people say what am I going to do without my right hand?" The thought never entered my head and I only used a walker for a couple of weeks. But after 3 days isolated in ICU and throwing up for the brain stent with no family or friends because of the ice storm and no food because of the procedure, I was sick and weak and scared and tired. I never said a word when the doctor walked in my room, no complaints, I was just glad to be out of ICU. That doctor came in and kicked me at the lowest point of my life just to put on a show for his students. I didn't even know who he was and still don't.

I didn't expect much but a little compassion would have been nice.

I could deal with all of this one thing at a time but all at once is just more than I can take anymore. But I will get through.

Thanks again and a big hug to you. Likewise if you ever want to talk...I'll be here.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We all go though bouts of depression and anxiety: how could we NOT? Cancer is soooo scary! If you scan down the various Discussion Boards on this website, you'll see a bunch of Discussion Boards devoted to emotional support alone. And if you snoop around in there, you'll find my embarrassing whining posts about my 1st Christmas with cancer, and my worries about my sex life, and on and on. And there is a thread going under 'Gynecologic Cancers Other Than Ovarian' where I post regularly with the rest of my 'UPSC-Sisters' (women with my same cancer: Uterine Papillary Serous Carcinoma) where I air every worry and fear. It just helps to put the pain into words, and direct it to an audience that understands and that isn't judgmental. I am blessed with a wonderful support system with my husband and children rallying around me. But I have to filter all I say to them, to protect them from added worry or pain. Here I can let it all hang out. So can you. Feel free to drop in on the UPSC sisters thread anytime; and the Ovarian Cancer sisters are another very warm close-knit community on their Discussion Board and I often pop in there. And every day someone newly diagnosed with cancer posts an "I'm scared" message, and would LOVE to hear from a cancer survivor that proves to them that there is hope. If you'd like to see the pre-cancer Linda, (with hair!), my web address is www.procopiofundraising.com (look under Mission) (((Jane))))

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

I have been reading your posts on the other threads and I am ashamed of my little problems listening to what you have all been through. I wish I had found this site a year ago when I was feeling so terribly alone.

You are beautiful with hair, my dear but I think you are pretty spunky without it too!

I guess my emotions are running a little out of control these days because I have two friends who are losing their battle and my feelings of guilt are a little out of whack. And always into the night when I am alone...don't sleep very well sometimes.

I go back to see my internal meds doctor next Friday for a follow up and the last few months have not been good ones. In the last 5 years I have lost 150 pounds...purposely. In the last two months I have gained 5 back. It is the first time in 5 years I have gained and my blood sugar has not been as good as it could be...not bad but just not where it should be. Mostly from holiday stress especially with my idiot family and I was beating myself up about it. I walk a lot which is hard for me because on top of everything else I have severe osteo arthritis but walking is my thearapy. They told me 5 years ago that I would not be walking in 2 years and they were wrong. Last Saturday I walked 5 miles. Usually I only walk 3 a day. I walk along the Mississippi River and watch the eagles with my binoculars and listen to my iPod but with winter weather I haven't been walking as much as I would like. Anyway I decided today to quit beating myself up for the failures. There is nothing I can do about them except to start over tomorrow to do better.

There is nothing I can do about the family. You can pick your friends not your family. Sometimes you just have to let it go to survive. I managed 30 years ago and I can do it again. I have wonderful friends and they will get me through.

My doctor had recommended that I find someone to talk to but could not give me any suggestions. I will be happy to tell her that I have found people who understand.

Thank you my dear for sharing your pain. Keep on fighting and I will keep on praying and sending good thoughts into the universe for you and the rest of the girls here. Please if there is anything I can do to help you just let me know. My regular email addy is pfg@machlink.com and I have a myspace page @ myspace.com/cindybryant.

I have to get my butt to bed somehow. I have to get up at 4 am for work. Take care!

XOXO

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If anyone had ever told me that 'cyber communities' of people who I know only in the virtual online world would be important to me, I would have told them they were crazy. But they are; the relationships and the caring are real, and you can find specialized communities, international in their scope, that are passionate about the same things you are. And the shared passions and concerns of online Discussion Boards have proven to be VERY educational for me because the combined expertise of the people posting in these specialized communities is often outstanding.

My first experience with this was when I got into gardening in a big way, and I joined an online horticultural community message board and an online organic gardening message board. (My local 'real' Garden Club here in the sticks of Pennsylvania mostly focuses on Flower Arranging, and I really had a million questions about growing plants and soil.) Because of the international nature of these clubs I was forced to use the universal Latin names of all plants I had questions about, and even though it has been years since I've had time to post in those forums, I find I still know the Latin horticultural name of every plant in the nursery or in a catalog, effortlessly learned through that Message Board. From that group I learned of a virtual Book Club, and belonged there briefly because I love to read a book with someone else and talk about it, but I couldn't really find the time to keep up with those people of greater leisure time. And, related to my work, I post on Philanthropy News Digest's Message Board, just to talk about fundraising with my peers. Funny thing: the first time I posted here, I got an email from a man who asked if I was the same Linda Procopio from the PND Message Board. He had testicular cancer and is a regular poster here! Small world!

I am, by nature, a very social person, so finding 'friends' in cyber space may seem odd. But I work from home on a computer, and the written word is my trade, so I guess it makes sense that I would gravitate to these communities. It allows me to LOOK like I'm working, when I am in reality goofing off! HA! :D

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

I can not tell you (or maybe I could) how much it means to know that there are other people who have gone through what I have and understand the feelings that I don't even always understand. I swear at least one dark cloud has moved away and a little sunshine goes a long way.

I have noticed that the people sharing their stories and fears, and hopes, etc. on these boards are extrememly caring and warm hearted. Bless them all.

Well, it has been a very long day since I was up at 2am and couldn't sleep so it is going to be an early night tonight. Take care my dear new friend. Thank you for easing my heart and mind a bit. When I talk to my internal med. doctor next Friday I know she will be happy that I have found someone to talk to and I will give her this web site to pass on to other patients who may need some support

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