I thought I'd start out with a post about my cancer journey to date since that's whats on my mind a lot these days!
Getting diagnosed...I was first diagnosed in October of 2005. I had been sick for a good month, not being able to eat and having nausea, etc for most of that time. After a bunch of doctor's appointments and tests that looked at everything and everywhere except for where the problem was I ended up in the emergency room because the pain was so bad. They did a bunch of blood work and a ct scan. The didn't tell me what they saw but I did have to convince them that I was definitely not pregnant. Apparently they thought that it was some kind of pregnancy complication. So I left the er that night with an appointment to see a gynecologist the next day.
The initial helpful doctor's visits...At the gynecologist appointment they did more blood work (ca125) and an internal ultrasound. I pretty much had a tumor on each of my ovaries that were bigger than grapefruits. No wonder I was feeling so bad... they were pushing on all of my insides! From there this doctor gave me an appointment to see a gynecological oncologist, Dr. Charles
Welander.
I saw Dr.
Welander the next day I think. He told us (my mom, dad and at the time boyfriend) that it could be several things and that we'd need to see what the ca125 was, most likely for someone my age (26 at the time) it was most likely just cysts or
fibroids or something that wasn't too serious. Even if my ca125 was elevated it didn't necessarily mean cancer. Dr.
Welander was great, he gave us very helpful information in terms we could understand.
So I have to have surgery...I got a call from Dr.
Welander within a day or two of the appointment to tell me that the test results were back and that my ca125 was in the 600s, I don't remember the number now. This
meant that I'd need to have exploratory surgery within the next week. At this point I was honestly relieved because I felt that whatever it was it would not be diagnosed and hopefully fixed and I wouldn't feel sick anymore! I was missing a lot of work and just feeling so sick most of the time. I was very lucky to have such an understanding manager at the time. She was not a stickler for exact hour counts and trusted my judgment.
So my surgery was scheduled and I went in early on a Wednesday morning. In the waiting room my boyfriend and I were
greeted by my pastor from college. I had no idea she was going to be there and it was a very touching and helpful surprise to have the support of yet another person!!
In the ICU...I woke up in intensive care the next day I think. They had left the breathing tube in and were waiting for someone to take it out... that was pretty terrible. I remember my dad standing on one side trying to calm me down and my mom on the other side doing the same. Finally some guy came in and was able to take the tube out. That was a relief! After it was out I spent another day or so in intensive care where I had a great nurse. I remember all the visits from my mom, my dad and step mom, my boyfriend and my two best friends from college, even though they lived far away they found a way to come see me. I'm not sure if they know how much that meant to me.
My first move...I was then moved to another unit... I don't really remember the name... it was were many heart patients go. Those few days were not so good. I had one really great nurse, one really bad nurse and one wonderful intern who went the extra mile for me. I had lots of visitors and lost of flowers. I was really shown a lot of support. Here I started to get out of bed and started to walk around. It was a little scary and I was a bit hesitant but I did do it. I had no idea how much I really use my abdomen muscles! My incision was vertical starting at my belly button and going down.
Moved again....For my last few days in the hospital I was moved to the woman's unit. These rooms were beautifully decorated and so nice to stay in. The nurses in this unit were also wonderful! That really does mean a lot to a person in the hospital to know that when you hit the nurse button someone will actually show up quickly and take you seriously when you have an issue... the same couldn't be said for the other unit I was in! I also had a great intern in this unit, luckily on the day I was being released so I got special treatment and was out of there more quickly that most! I suppose the only drawback to these rooms was that my visitors had to walk past the babies which was a little sad since after this surgery I wouldn't be able to have any.
So what's the deal...I don't remember exactly where I was when my mom and dad told me what the diagnosis was, but pretty much it was ovarian cancer, I had two tumors, both a bit bigger than grapefruits. I was only stage I. I also found out that my ca-125 a few days before my surgery was in the 900s. The doctor removed both of my ovaries and my fallopian tubes. He left my uterus in case I wanted to have an egg in plated later.
Time to go home...I was in the hospital for a little less than a week. I went home and my recovery was pretty uneventful. I was lucky to have my boyfriend there to help as much as he could. I also had my mom come and help me most days when my boyfriend was at work. My dad also came and helped me out many days as well. I was very well taken care of! I was also very lucky in that I was able to work from home while I was recovering so I wasn't rushed back into work.
Back to the doctor's...My first trip back to the doctor's was pretty uneventful. They took out the staples from my incision. After that I had a few more visits. Everything was looking good. My ca-125 was down to under 30! After I had healed some they started talking about chemo. I was to start chemo in November 2005. Dr.
Welander was great about telling me why they had chosen the chemo they did and what kind of side effects to expect, how long I'd be doing it, etc. His nurse, Iva was also great. Every time I went in she remembered me and was always really nice.
Preparing for chemo...Once I found out that I would have to do chemo I got a little freaked out about losing my hair. I started chemo I went with my mom to a wig shop in town but they weren't very helpful. I wanted to have one that was long hair since I had kinda long hair. The only ones they had in stock were short hair ones. I also went to the American Cancer Society where they gave me a wig and some hats. It wasn't exactly what I wanted but it would do. I ended up ordering one online that was what I wanted. I wasn't really worried too much about chemo. I felt better than I had in months because I wasn't in pain any more and I could actually eat without feeling sick. I also had a really nice surprise a week before I started chemo. My best friends were in town visiting and my boyfriend proposed to me. It was a huge surprise since he had always said he wouldn't want to do it when other people were around. It was, of course a lovely surprise!
Chemo...For my chemo I had a
metaport put in so that they would not have to go in through my arms or hands every time. It was under the skin on the upper part of my chest on my right side. After the surgery they eventually found me a room and I started my chemo that afternoon. I did a combination of
Carboplatin and
Taxol. I did it monthly and it took pretty much all day each time to get it. I slept for half of it every time because of the
Benadryl. The first day after chemo I felt pretty good from the
sertiods! After that I was pretty sick. I eventually was given
Zofran for the
nausea and that helped. I still had a days though where I couldn't eat or drink anything or I would be sick. On those days there was nothing that would help and I would still vomit even if I didn't drink or eat anything. I did chemo for six months. I had my last treatment in April 2006. My ca-125 was under 15 after all of my treatments. My numbers continued to be fine. I had my
metaport removed in August of 2006.
After Cancer...I continued to go to the doctor every three months and everything continued to look fine. A few major events happened in my life. I got married in June of 2007. My husband got a promotion shortly after we got married. I got a new job with much better pay with a great company in September of 2007. We had to move for my new job. It wasn't too far away, only about two hours away from where we were living.
Something weird...I ended up going back to my original doctor for my next checkup after we moved because I hadn't had time to look for a new doctor in the area yet. I was having a weird issue too. I was bleeding all the time almost. Like a period, I could still be having a period since I still had a uterus. But this was constant for the most part, not just a few days a month. The doctor checked me out and did something extra, he took a sample from my uterus.
Again?A few days after my appointment I got a call from the nurse. "Are you sitting down?" It's cancer. Turned out I had uterine or
endometrial cancer. My first worry this time was my job. I had only been working there for a few months. I thought for sure I'd lose my job! I had to have surgery again. It would be pretty much the same type of surgery I had before. Turns out they were great at work. They gave me the time off I needed and even gave me short term disability. I didn't even know that was
available to me! So I went in to have surgery at the
beginning of January. The surgery went off without a hitch. They removed my uterus. They left my cervix because they had trouble getting to it and did not want to mess up my
bladder in the process of removing it. My recovery was a bit better this time. They didn't leave the breathing tube in this time, not because of the doctor but the
anesthesiologist thought I was
ok to take it out. I also wasn't feeling sick when I went in so I think that helped some as well. I was in the hospital for about 5 days. After that I was home for about two to three weeks then I went back to work part time for a while until I felt good enough to go back full time in mid
February. I didn't have to do any more treatment for the uterine cancer. It was contained and the tests they did did not show any need to do any other treatment. The doctor did however say that he saw a few spots of the ovarian cancer while he was in there. He had those tested and they were
in fact from my
previous cancer. My ca-125 was not up however and they were not big enough to see on any scans. There were two options at this point... wait and see when/if it became a problem or do chemo now without any way to tell if it was doing any good. He
suggested and I agreed that waiting was the best option for me.
The new doctor...I did eventually find a doctor in my area. It was hard, there aren't many in this area. This new doctor was a bit older and his office wasn't nearly as nice but he would be
ok I thought. I liked him enough. He agreed with the wait and see approach as well. My ca-125 did start going up. At first it was in the normal range then in August of 2008 it was 40.5. He said that he would like to wait a month and make sure it wasn't a fluke or something with the lab.
The trouble begins!So in September I had another test done. The nurse from the office called and left me a message at work, the message was left at 2:00. I was to call her back... but... she was only in the office three days a week from 10am to 2pm! Good lord! I want that job!!
Ok, so the next day at a little after 10 I try to call. No answer, oh yeah, and you can't leave a message, just page the doctor.
Ok, so I kept trying to call until 11 when I had a meeting. After the meeting around 11:30 I continued to try to call, probably every 10 or 15
mins. I really wanted to know what was going on! I eventually got an answer around 12:30... my ca-125 was 55 and the doctor wanted to do a scan.
Ok, so what's the process for that I ask... Well the doctor just needs to sign the paper and it can be scheduled. It took three weeks to schedule the scan. First the doctor was only in the office once or twice a week. That I can understand because it was the same way with my other doctor. He wouldn't be in because of the holiday. Then I called the next week, he didn't get to signing it, he had so many things to do that day. She assured me that he'd sign it the next week and that we could schedule it. She could do it for me or she could send me the paper to get it done. I decided to have it mailed to me because I didn't trust her to get it done and I wanted to be able to schedule it when it was
convenient for me! So I got the paper in the mail. Turns out the doctor was supposed to fax it to them and they'd call me to schedule. What a mess! I got it all
straighted out and got my scan scheduled.
Disappearing act...When I scheduled the scan they requested that I bring a copy of any other scans that had been done so they could have something to
compare it to. So I called my doctor to get them faxed over. When I called the phone number was going to a different doctor's office. That freaked me out big time!!! What the crap!! So I called and called and called, always getting a message to leave a message and the nurse would call you back. But I wanted to talk to someone! I eventually left a message and I got a call back. Turns out that the doctor that my doctor was sharing an office with was going to join this office. What was my doctor going to do? Don't know, the only contact number they had for him was his pager number. Did they have my records? No, of course not. They couldn't give me any more info than that. So I started to really worry... if that office was closed then where were the results of my scan going to go? I called the doctor's pager number, it was an old school pager too! Just type in the number, no voice message, just leave the number. So I did that, I never got a call back. So I decided that I'd try to make an appointment with some other doctor in the area. The only other group I could find that was close I called but they would not even talk to me because I didn't have a
referral. I tried to explain that I did
in fact have cancer and that I was just new to the area. They said that I should go to my regular
gyno and make sure that I did have something wrong. HELLO! But this person wouldn't listen to me, I kept trying to
explain, but no, I needed a
referral... sigh... so crying and freaked out to no end I made an appointment with my old doctor. He was a bit far away. It would be about a two and a half hour drive for the appointment. But what choice did I have really? I needed to have a doctor lined up to look at the scan, otherwise what was the point? On the day of the scan I was able to tell them to send the results to other doctors. I got the scan and eventually my other doctor got the results. Once they saw them they said I
definitely needed to come in.
Verdict...So turned out that yes in deed the
ovarian cancer was back. There were several spots that were very small but there. It was just in the
abdomen cavity, it has not gone anywhere else. So that was good news. He said that surgery wasn't really a good option but I'd need to do chemo. It would not be very easy for me to do the chemo with him since it was such a long drive. He looked up doctors in my area and there were only two both in the same office. The office I had tried to call before. He said he would write a letter and send my file to this office.
Another new doctor...I called a few days later and made an
appointment. My new doctor is good. He doesn't give me as much info as Dr
Welander did but he is a good doctor. He talked to me and he did an exam. He said that I'd need to do chemo of course. He said that the chemo nurse would call me to give me more info and get everything setup in the next week.
Let's get started...It started off a little bumpy. I didn't hear anything from them for a week so I called them. They
immediately freaked me out! I got a voice mail on a Friday evening after they closed saying that I needed to get blood work done first thing on Monday morning because I would be starting chemo on Tuesday! What??? I wanted to have a
metaport put in again before I started! So I called as instructed first thing on Monday and they insisted that I get blood work done right away. I work. I can't just leave, at the time at work I was involved in something that had meeting often. I couldn't just leave because I had a meeting. So I did get my blood work done that afternoon. The lab didn't have the paperwork... it was a mess! But it did get done. I also gave the person on the phone a piece of my mind, I needed to speak someone about all of this and I needed more information! I eventually spoke with someone and she was great. She was under the assumption that I had already started chemo somewhere else and just needed to get back into it. Once we got everything straight it was all good. I got scheduled for putting in the
metaport and to start chemo.
