I've decided to have a guest poster once a week. While I started this blog to share my story my main goal was to raise awareness. I have met so many wonderful fighters and survivors since I started my blog. There are so many stories out there that need to be told and heard. Here is the first story provided by a brave, strong & inspirational woman, we will call her "H". Please take the time to read her story and comment if you can. I would like to add that this story is very similar to mine and scary as hell. If you are a woman you MUST READ THIS.
I was diagnosed with Cervical cancer in Feb of 04, although I knew I was sick for about a year before that. I had been just feeling general malaise and yucky. I had started up a relationship with “S”, as I will refer to him on here, about 2 months prior to not feeling well but my symptoms started way before that, I just didn’t know what they were.
In March of 03 I was living with someone and our relationship was not the greatest, it was on the way out. On one of the nights that we got along (there weren’t many at this point) we had sex. Afterwards I got up to go to the bathroom and to my dismay there was blood all over the bed. When I say all over, I mean ALL over. I honestly thought I was having a miscarriage. I called my GYN on Monday and he was out of town so his partner saw me. I went in and he did a pelvic exam, told me I wasn’t pregnant nor had I been, and that the inside of my cervix is like the inside of your nose and sometimes it will bleed. He put silver nitrate on me and told me not to have intercourse until I saw my regular GYN in 10 days. What a relief! I went to my follow up appt and my GYN said everything looked normal and to resume normal activities.
My normal activities included leaving the jerk that I was with and moving to my own apartment. In the meantime I was just not feeling myself – tired, lethargic, no appetite and just plain crappy. I was having a little spotting but nothing I felt was too out of the ordinary. I had gone out with my girlfriends one night that I was feeling better and met “S”. A great guy who I had a lot in common with. We started dating exclusively around June of 03. All was well until we started having a sexual relationship. (I hope that my blog is not too graphic for anyone I just want everyone to know the signs to look for) The first time we had sex I bled again. Bright red blood all over and this time it hurt. Talk about embarassing :( How do you explain that to someone? He was very understanding but at the same time I became very self concious and felt that we had to “prepare” everytime in case I would bleed.
I went back to my GYN not long after the first time “S” and I had sex because not only did I bleed and have pain but now I had a horrible yeast infection! He saw me, diagnosed me with a Gardnerella infection (yeast) and a bacterial infection put me on Diflucan and Metro gel and sent me on my way. Still NOT addressing the bleeding. Meanwhile I still feel like crap and the pain during intercourse is getting worse. I remember one time going into the bathroom afterwards and passing out on the floor. He found me like that. I decided not to go back to the GYN I had been seeing and go to my family MD instead. Maybe he could help me! I still had this yeast infection and was just plain miserable, all the while trying to keep my chin up and be my normal self and have this new relationship with “S”. My MD told me I had a yeast infection (no shit) and put me on more Diflucan. I dealt with this for about another week or so. I also made an appointment to see a different GYN that a friend referred me to. He HAD to have some answers!
I will remember this next day that I wil explain to you in vivid detail. I remember it so well because I have never wanted to commit suicide before but I thought about it more than once on this day. I had this ongoing yeast infection now for over a month. I stayed at my sisters house the night before(thank god for small favors) and that night I couldn’t sleep at all. I was in so much pain and agony from this infection that all I could do was cry. I was still on the Diflucan (my MD gave me an ongoing RX for it to take 3xs a day! Like thats normal!)and the Metro Gel and was getting no relief. I told my sister that I wanted to die. She asked me what I wanted to do and we decided to go to the ER. I knew that they wouldn’t be able to help me but I was desperate.
The ER doctor do a pelvic exam told me I had a yeast infection (really, I should be a doctor considering I told them that when I went in and had knew it for over a month) put me on a different kind of medicine for yeast infections and sent me home. The medicine he gave me gave a little relief but I was still not up to par.
I had my first GYN appointment with my new GYN and told him about all of the things that had been happening to me. He did a pap (which came back normal) and told me to discontinue condom use (wtf??) because it was causing me to have “rubber burn” (seriously people these are his words NOT mine). I told “S” and boy was he happy to hear that! Can you imagine?? Doctors orders! This GYN noted on my chart that my cervix was “friable” which basically means in laymens terms that if you touch it pieces of it will fall off. Yuck! So we quit using condoms. Nothing changed though. It is now around Dec-Jan of 04. “S” and I had moved in together and were trying to start a life together, or so I thought. At this point there wasn’t a time where we would have sex that it didn’t just about kill me. I was actually trying to get away from him during it and would end up crying, not to mention that the bleeding was worse.
I went back to my GYN in the beginning of Feb, he did another pap (again negative) and he told me that I needed a laser cauterization of the spot on my cervix that wouldn t stop bleeding and hurting me. At this point in time I knew EXACTLY where my tumor was I just didn’t know that it was a tumor. He told me that this wasn’t something that would “kill me” (again his words, bet he wishes he wouldn’t have said that now) but if I wanted to stop bleeding and having pain during intercourse then I should have it done. I decided to go ahead with the procedure, but before he took the speculum out I asked if I could look inside. He gave me a cute little mirror that bent down so I could see inside of my vagina. What I saw I will never in a milloin years forget. Your cervix should look like a cute shiny pink doughnut….mine (if you think of the face of a clock) was black from 3 to 9. BLACK. I have never seen anything so gross ever. I excaimed this to him and he said it was dried blood. Huh… really?? I now know what cervical cancer looks like.
I go to have the laser procedure done and am very nervous considering I had never even had a stitch. All goes well (or so I think) and while I am in recovery my GYN tells me that he felt that something looked “funny” in there and he did a cone biopsy instead. He also told me not to worry. So I didn’t. I had the procedure done on Friday and was told to call for my results on Tuesday.
Tuesday afternoon I was at work and called my G YN ’s office. His receptionist told me to hold on while she got my results. This was weird right away for me because she never did this. She always just read them to me from my chart.( I am only telling you about the GYN appts that I had that are meaningful to this story. I actually had 12 negative pap smears in the year before I was dignosed. This is why I know that it was weird for her to put me on hold.) She comes back and tells me that the GYN would like me to come in and talk to him. I knew right then. I asked her if I should bring someone with me to my appointment. She said “Yes honey, you should.”
I called my mom and told her she needed to come to the GYN with me that I had cervical cancer. We went to see him and he told me that I had squamous cell carcinoma of the cervix but that he didn’t think it was too invasive and that I should only need radiation to get better. While I was devastated and my first question to him was if it could wait until I had a baby, he reassured me and gave me a referral to a GYN Oncologist.
I saw him the next day. What a jerk! My mom, “S”, sister and I went there and he did a pelvic exam. He told me that I needed a radical hysterectomy, radiation, internal radiation, chemotherapy and that I needed it about 6 months ago. I call him a jerk because while all this was true, he had complete disregard for the fact that I had no children, was young and had just been diagnosed the day before. We were still being optimistic at this point. I asked him if I could have a child first. “Absolutely not if you want to live” is what he told me. I have always wanted children and this was a big blow for me, as if having cancer isn’t bad enough, now no kids either. I called my GYN and asked for a referral to a different GYN Oncologist and was referred to Dr Garth Phibbs. He is amazing.
I saw Dr. Phibbs and while he told me all the same things as the first guy he was very knid and concerned and told me that I had had this cancer for a long time. Again, no shit. On March 19, 2004, I had a radical hysterctomy and he moved my ovaries up after biopsying them in case I did need the radiation treatments.
I had Stage 2 B Squamous cell carcinoma of the cervix, ueterus and the tissue surrounding and it was in one of my pelvic lymph nodes. The radiation would be needed after all. Dr Phibbs gave me a little time after my 6 weeks of healing to go the the University of Indiana and have in-vitro surgery. I have 4 eggs frozen there :). This gives me some hope that someday I can still have a child of my own.
I had 5 weeks of external radiation, 6 chemotherapy treatments with Cisplatin and 3 internal radiation treatments which it was those three things that cause me all the problem s that I endure now. I swear that if I would’ve just had that hysterectomy I would feel fine today! Those treatments have caused me to have menopause at 29, vaginal dryness and worst of all vaginal stenosis. I have to use a dialator (or have intercourse but since I am single…) 2-3 times a week and it hurts so bad that sometimes I can hardly walk the next day. I have to do this for the rest of my life or the opening to my vagina will close forever. It’s not fun.
All through my surgery “S” was there for me, he stayed in the hospital with me, went to my treatments with me and was my rock. I still love him for that. I found out about a year after all of this happened to me, that the whole time I was sick he was trying to date someone else and telling her that “my girlfriend is sick but as soon as she gets better I will leave her for you”. Saying this to her and staying in the hospital with me. ASS. Needless to say, that was it for me. I couldn’t get over the fact that if he would do something like that to someone he loved when they needed him the most that he would do anything. I made him move out and have been pretty single ever since.
I have dated but cancer is a hard subject to explain to people (especially men) and the fact that I cannot have children makes it even worse. I have told some, never to hear from them again. Others are fine with it until we try to have a “normal” sex life because for me that is non-existant. I am okay being alone for now though, I figure that if he can’t handle it then he isn’t worth my time anyways.
Present day- I am 33 now, and am feeling pretty good physically (minus the vaginal issues, hot flashes and night sweats :P) and am working full time as a dental assistant and have even gone back to college! I think I might make it after all!
I read your story and all I can say is that you are a very strong woman. I have been frustrated as hell for over 5 years with absent periods and hormone imbalances and I'm only 22! I know how frustrated this must have been for you, especially dealing with doctors who don't know anything! I've been told I have either pcos OR tumors OR pre-cancer, hypogonadism, etc..
You did the right thing in leaving that A-hole, that shows you have much self-respect, and that is a very rare quality to find in young women now a days.
Always remember that someone out there has it worse than you, and that somone is always looking up to you wishing they were you. We can't ever take our own life, our death is God's will, not ours.
Keep your head up! It's better to be single then to be with an ass who doesn't appreciate you!