After a couple of good days of not thinking about anything other than the moment and the holidays, I snapped this morning. I'm not sure if it's hormonal or just the weight of everything coming down on me. I started out looking at pets on petfinder.com. I wanted to adopt them all, and yeah... Then this morning I started thinking about surgery, and found hystersisters.com and then started just bawling because of the reality of surgery and how hard it's going to be. I'm just scared to death. I know I'll get through it, but right now, I'm just losing it.
November 2008 Archives
This is what the shitty oncologist has determined my 'mass' is. A tumor. The other oncologist called today and gave me an appointment for 12/5 at noon. I'm sure that my surgical options will be discussed and something scheduled then. I'm trying hard not to be crushed before I know more, but the sooner it's dealt with, the sooner I can begin true healing.
I don't want to have to tell my mom tomorrow. I don't want to spend the next week and a half thinking about this. I don't want to have major surgery; to go through that pain; to never have kids. I don't want this. And yet. It's here. It is. And I have to deal with it somehow.
I called and scheduled the MRI... their choice, not mine... for 12/2 at 5pm. Happy birthday to me! Let's all pray for a birthday miracle or at least some good things to happen then. I called Dr. Wright's office for the pre-medication regime, and I'm waiting for a call back on that. In other news, my parents agreed to come out again for Christmas, yay! It will be nice to have their support again, and gives me something to look forward to as I'm playing the waiting game here.
I'm trying to get into healthy habits both physically and mentally. I'm watching what I eat since the Megace can cause overeating. Since I am definitely looking at surgery of some sort, even if it's just the hysteroscopies, I do not want to increase my surgical risk with extra weight. So far, so good though.
I know that a lot of this fight is going to be mental, and that I really need to keep a positive attitude to get through whatever's coming my way. It's harder to do when you're hit with unexpected things. On Wednesday I went in for my CT scan and MRI. The CT scan had oral contrast before I got to the office, and then an IV iodine contrast during the procedure. The nurse set me up with the iodine, said that I'd feel warm as it went through my circulatory system, and to let her know if I felt anything out of the ordinary. I got through the first round with the contrast, and the nurse came back in the room and asked how I was feeling, and that I shouldn't be feeling anything getting any more hot. I said my lips were tingly and my gums were also tingly. She thought that might have been from holding my breath for the different scans, and left the room to do the final scan. As I was laying there on the slab, my face started to feel really hot and stretched. My forehead was tight, my cheeks were tight and it was getting harder to hold the breath like the ct scan instructions were telling me to. It was over quickly and the nurse came back into the room with a radiologist, and apparently I had a fairly severe reaction to the iodine contrast. My face swelled up, my ears swelled up and i broke out in hives from head to toe. Into the IV went some benedryl, and I was hooked up to a saline drip to get my blood pressure higher. I layed there for I'm not sure how long, the hives started to go down on my arms, my face still felt impossibly tight and my ears were just not of this world anymore. They checked to make sure that it wasn't in my lungs, that I wasn't wheezing and that my throat wasn't obstructed. I felt fine except for my face being tight. The nurse brought my mom in and said I was having a reaction but I was going to be okay. The doctor came back in, and gave me more benedryl and prednizone, the benedryl to take care of the reaction going on now, and the prednizone to last for the 6 hours that the iodine might be in my system. I needed to pee so they let me go to the bathroom and that's when I saw my face in the mirror. Everything was impossibly swollen... I didn't look anything like myself at all. My ears were red and stuck out from the sides of my head at weird angles; I could barely open and close my eyes. I went back into the ct room to sit and wait for more of the swelling to go down. The doctor was surprised that the 75mg of IV benedryl did not make me sleepy at all, but he said that we could wait there all day and watch the swelling go down or we could go home. He said if the reaction started progressing again we'd have to go to the ER, but that was unlikely. For the MRI, even though it uses a different contrast agent, there's still a 10% cross reaction rate, and I would have to be pre-medicated to get it done. Basically they prescribe the benedryl and prednizone to be taken 13 hours before the procedure, and this minimizes reactions. It would also have to be done in the hospital not in one of the imaging centers, just in case I went into shock, etc.
Lovely. I went home, waited for my face to come back to normal. It didn't. The next day I took 100 mg of benedryl and finally got closer to normal. The radiologist who treated the reaction called me the next day to make sure that I hadn't had any further reactions and didn't have to go to the ER. I mentioned that my face and ears were still swollen, and he said that they'd likely be like that for another couple of days and not to worry about it. It basically took 4 days for everything to get back to normal. And that has given me fear about having the MRI done, pre-medication or not. I know I need to do it because the MRI is going to be the test that either confirms Dr. Wright's suspicion that this is still a stage 1 cancer, or the test that puts me on a different path with the new oncologist. Either way, I just need to get it over with.
Monday I'll call scheduling to set up the MRI and ask them what I need to ask my doctor for as far as pre-medication, and then get all of that squared away. Hopefully I can get it done Wednesday and then not worry about it through Thanksgiving.
I wasn't sure I would ever write about this and publish it, but it's a part of me as much as anything else I write about. I've been diagnosed with endometrial adenocarcinoma type 1, which means I have a highly treatable form of cancer. Starting from the beginning would be helpful I suppose. Ever since the miscarriage in late 2005, I've had heavier periods -- I attributed this to age, and it was nothing too severe, or so I thought. It did apparently make me chronically anemic (which also explains the decreased energy that I'd been attributing to not eating well enough, not exercising enough, and getting older). On October 9th, 2008, my period started as normal, but the bleeding was severe. Usually the heavy bleeding would last for 24 to 36 hours, but this lasted for a full 5 days. I was weak, I could barely walk from one side of the house to the other without getting winded. I started taking a multivitamin with iron in it, and made an appointment with an obgyn for October 28th. That rolled around and I was diagnosed with a "pelvic mass" and told to get a pelvic ultrasound for further diagnosis. She also had some blood tests run on me, and I went home.
The next day I got frantic voicemail messages, saying to please call the doctor's office immediately. Apparently my cbc hemoglobin count was 5.4... normal range is 12 to 15. I would have to be admitted to the hospital and transfused. That was scary as I'd never been in the hospital before, and I have an extreme fear of needles. 24 hours later, I'd received 4 pints of blood, and had the pelvic ultrasound done. It appeared that I had a very large (12 cm) fibroid. The original doctor (since fired) wanted to just prescribe birth control pills and see me again on November 18th. I went home feeling more energy than I had in months -- my count was 8.9 when I was discharged. Unfortunately, I continued bleeding, outside of a cycle, and heavily. I went to the ER Friday night, but I'd stopped bleeding by then. My blood count was 8.4 so I was still okay. The ER doc prescribed Provera, 10 mg once a day to stop the bleeding with the understanding that I'd go back to the obgyn for a d&c the following week. The provera worked for a day, but Sunday night I started bleeding again, and this time it didn't stop before I got to the ER. The ER doc that night called in another obgyn (one that I'd received a referral for Friday night from the other ER doctor), and she began treating me. First she put me on Megace, which is similar to Provera but 4 times as strong. I detailed my history, and she was going to do a d&c on me that night, but then stopped when she heard about the massive fibroid. She requested the ultrasound from the other hospital (long story there for another time), and decided to admit me to the hospital for observation overnight. I had stopped bleeding with the Megace and she came to talk to me the next morning.
We discussed the mass, and potentially shrinking it and then removing it. She was very up front and detailed, but made sure that I was following along and answered any questions I had. She said that my blood count Monday morning was 7.1 which is low, but since I wasn't showing any symptoms of the anemia as far as blood pressure and dizziness, that I could go home and continue the iron supplements three times a day and stay on the megace to control the bleeding. Of course right about then, I started bleeding again :) Not a problem, increase the megace to 2x a day. I went home and did as best I could, but I started bleeding again Tuesday morning. I called Dr. Wright, and she said increase to 3x a day, and I'd need to come in for an endometrial biopsy. An in the office procedure, it's just a precaution to rule out cancer. Once the cancer was ruled out, she would schedule me for outpatient surgery to begin removing the fibriod. I was scheduled for the outpatient surgery to take place on November 10th, and that was that. Until Thursday night, I got a call. And Dr. Wright explained that the biopsy results had come back and it was cancer. She assured me it was a very treatable form of cancer, and that the standard treatment for women who haven't had kids yet is to keep me on the Megace for 3 months and then re-evaluate. The Megace is actually known to cure/kill the cancer cells and can reverse the diagnosis completely. She referred me to a gynocological oncologist, and I made an appointment with him for Thursday, November 13th. The oncologist, I was warned did not have a good bedside manner, but he was very good at what he does so don't worry about it.
Nothing could have prepared me for the hell I was about to face. This was the worst doctor I have ever encountered in my entire life. He did not seem to review my charts at all, gave me the roughest exam ever, and proceded to detail the "Standard treatment" for this cancer, which was a radical hysterectomy. Removing everything from the cervix, to the uterus to the fallopian tubes to the ovaries and all the lymph nodes in the abdomen. He said that while my type of cancer is the least aggressive, there was no way to know what stage my cancer was in until he removed all of those parts and they were sent to pathology. Then after I had all my reproductive organs ripped from me, someone would tell us how progressed the cancer had been and I'd either get no follow up, or radiation and or chemo. As Richard and I were sitting there in the office, he threw me a bone and said maybe if he gets in there and the ovaries look okay, he could leave those in and we could do invitro with a surrogate later.
He pushed on this 'Standard Treatment' and I said what about the non-standard treatment where I'm on megace for 3 months? He said I assume the risk when I don't take the standard treatment, and I said that's fine, what's the non-standard. He said that the non-standard treatment only had a chance of working if the cancer was still stage 1 (which means it's just affecting the endometrium, and has not spread to the walls of the uterus, etc), and there was no way to know what stage it was in. He would have me get a ct scan and an mri to see if that could show that it had progressed to stage 2 or higher, but even if those two scans showed nothing, it was still no guarantee that it hadn't progressed already. But he wrote out the megace prescription, gave me the work order for the CT scan and MRI and said he'd see me in 3 months. Out the door, good bye.
I was devastated. Richard was angry. The doctor didn't even know I'd had an ultrasound and had not seen it. He made his diagnosis and treatment plans based solely on the biopsy. He did not care about my concerns, he did not want to entertain my questions. We asked him about my anemia -- I wanted to know what exercise was safe, and Richard asked about having me transfused again. The doctor's response: STOP BLEEDING, that will fix the anemia. I asked about what pain relievers were okay to take, and which to avoid... he told me not to have pain. I was floored. So as he ushered us out of the exam room, the bitchy woman up front started yelling after me not to leave. She wanted blood. I didn't understand what she was asking for and I just said whatever, fine you can take the blood here, do it. So she sends Richard and me to a room in the back of his office. Filled with women connected to IV bags. Everyone there was getting chemo. I couldn't hold it together any more, I started crying uncontrollably. Other women who had far more serious cancers and who were fighting for their lives there getting chemo were trying to cheer me up. One lady told me how wonderful the doctor was. She saw him on a Thursday afternoon and he had her up on the operating table Friday morning at 6am. That made me cry even more, and I was thankful I didn't agree to the "standard treatment" right there in the exam room like the doctor was pushing for. Finally after 20 minutes, the phelbotomist came and took my blood and send me home.
I cried the entire way home. I cried after we got home. I cried pretty much all night. Before this I had been pretty positive. I knew that surgery was a possibility, but I knew I had a shot of beating this without going through that. Now, this horrific excuse for a doctor had completely shattered all of my positive thoughts. Maybe Dr. Wright just didn't want to be the bearer of bad news? If this guy was so good, maybe it was just all lost at this point. I should just prep for surgery, skip the CT scan and MRI, and decide which holiday I was going to have ruined by this radical surgery and recovery.
Fortunately I decided the next morning that I'd call Dr. Wright's office and make an appointment to discuss all of this crap. I broke down, and the scheduler immediately asked if I was going to be okay, if I wanted to talk to a nurse right now about it, instead of waiting until Monday to talk to Dr. Wright about it. I said no, I'll be fine. My parents were flying in on Saturday, and I was determined to get back on track for them. After crying some more in the morning, it finally occurred to me how absolutely insane the "Standard treatment" was. With a cancer that is the least aggressive, this assfuck of an incompetent doctor wanted me to decide immediately to have the exact same treatment for potentially stage 1 cancer as for stage 4 cancer. If it's stage 4 cancer, it's stage 4 cancer, and everything has to come out. I understand that, and I accept it. But what if it's stage 1? Stage 1 CAN be treated hormonally. Yet, he prescribed exactly the same radical treatment. Fuck no. I am not accepting that, not yet. There's no reason not to try the Megace treatment.
My parents arrived, I talked things out with my mom and she agreed with me. She'd support me on any decision I wanted to make, but she agreed that the doctor sounded like someone out of the 50s. So, we went to Dr. Wright's on Monday, and she asked how things went, and I told her that this doctor was fired. I told her all of the things he told me, and she kept apologizing and had a mortified look on her face. She immediately went out to her partner and got another referral, and said that based on the pelvic ultrasound (that she HAD bothered to look at) she said she would be very surprised if this was anything more than Stage 1 cancer. She also told me to take the brochure on the Smith and Nephew hysteroscopy that Dr. Wright specializes in, to the new oncologist and ask if she thinks it would be safe to attempt that to get the 12 cm mass out of my uterus and then follow up with the Megace treatment.
So, I am waiting for the new oncologist to review my charts and then get back to me with an appointment time. I've regained my positive perspective, and I no longer think that I am going to die if I do not get a radical hysterectomy immediately. I'm happy to have fired the oncologist, and I hope that my doctor is more careful about referring people to him.
