Blue Christmas

I am going to talk about monthly girly things today...I am assuming if you are reading a blog called, "My Fibroid Journal" it is to be expected. 

If all would have went well, I would have been 12 weeks pregnant today. I would have been deciding whether or not to let the world know my secret or if I should keep it for one more week and save it for Christmas.

I probably would have told, if I hadn't all ready. My body would have given my news away to local family and friends weeks ago anyways. Specially, since there were two babies in there. I miss them today. I cried for them for the first time in a few weeks. 

Instead of announcing my pregnancy to the interwebs, I am experiencing my first cycle after my loss. It is almost as bad as the miscarriage itself. It is less painful, but I am bleeding way more than I would have expected. I wonder if the fact that the fibroid has increased the size of my uterus is the culprit? More uterus = more lining to shed? I don't know. Either way, I hope it is over soon. It is making life difficult.

And life is all ready difficult enough right now. Hubby probably doesn't want me sharing this online, but he was injured playing hockey. This means I am doing both roles while he recovers.  Thank God for family and friends. I don't know what I would do without them. 

I am not sure how mom of a toddler teachers manage to accomplish everything that is expected to be accomplished on a good day. Thankfully, it was a snow day. I got a bit accomplished but I spend valuable time, that could have been spent marking and prepping, shoveling. However, I apparently left my jump drive at work, so prepping would not have happened anyways. Hence the reason, I found 15 mins to blog. Anyhoo, I am off to bed. Two days left before Christmas break...

Grief

Different people express their grief over loss in different ways. Some people openly weep, others lock theirs deep inside. Some people reach out to others, some feel like disappearing from the world. Some cry months later, some get their all out in one shot. I don't think there is any right or wrong way to grieve but I think it needs to be done.

To be honest, I am not sure I have properly dealt with my grief. I have been too busy being a teacher and raising my daughter while dealing with my health. I am going to take some time now to self-reflect.

My pregnancy was an emotional roller-coaster in and of itself. My daughter, I'll call her Bean, is amazing. People had been asking us when we were going to have another one for awhile. My response was usually, "When we win the lottery." Our house is a two bedroom incomplete reno job and I have been struggling to get a full-time gig so there was no plan to have another baby any time soon.

I was genuinely surprised to discover I was pregnant, even though I knew I was pregnant before I took the test. I know my body well. I was exhausted. I was lactating and I haven't nursed my daughter since May. However, I kept telling myself it was all in my head, that I was jealous because a family member who has a son the same age as my daughter announced her pregnancy over Thanksgiving, and that if I take a test, it will be like most of the other tests, I have taken when my period is late, and be negative and my period will come.

I nearly died when the pregnant line showed up, bright and thick, way before and way darker than the control line. I didn't know what we were going to do. I wasn't ready for another baby. I was in shock. DH took it really well. He calmed me down. Over time I started to get excited but every time I looked at my house, I kept thinking, "Where am I going to put this baby?" I feel terribly guilty about these thoughts now.

I called my doctor. It would be three weeks before I would get into see her to "confirm my pregnancy." However, pretty much the morning after I took the test, I started to look pregnant. Every morning I woke up after, I looked more pregnant than I did the night before. I told my husband there was no way I was keeping this baby a secret until Christmas. My body was going to give up my secret way before then. I had on maternity pants pretty much right away. My sister came to visit and we joked about how many where in there and I hope it isn't a tumour. Ahhh, the irony.

Even though my belly was growing and I felt pregnant, there was part of me that just wouldn't let me bond with this baby. I knew something was wrong and could not wait for my appointment. I would practice what I was going to say to my doctor so I could get an early ultrasound. (The province I am in, you only get one ultrasound at 20 weeks unless you are high risk or have no idea how pregnant you are)

Thursday, Nov. 14, I finally got to see Dr. C. She was alarmed by my size and told me I had a 15 week uterus. We played with the wheel and figured I must be more pregnant than the 7-8 weeks I thought I was. We listened for a heart beat. Dr. C thought she heard one, quite high and on the right, but it seemed too slow and nonrhythmic to me, compared to Bean's heart beat. She told me she figured I was 11 weeks with twins and ordered an ultrasound.

Once again, hit with shock. I told DH and we were really excited and terrified. We told our families. I started talking to my babies and fell in love with them since I figured I was close enough to the safe zone at 11 weeks.

However, I would lose them the very next night.

My knowledge of my pregnancy was short. I see now that it was just a little over 2 weeks, but it was so full of ups and downs. My emotions ranged from fear, to elation, to desperation, to happiness and back again. Everything seemed to happen so fast! When I finally let myself grow attached, they were gone. I regret thinking, "No, not now." or "How am I going to do this?" I want them back so badly.

Every time I look at my daughter I think about how I could have had two more beautiful souls in my life. I morn for their loss and I squeeze her a little bit tighter everyday.

Empathy

This video is floating around Facebook right now. I find it very relevant to how I am feeling lately. I have been getting a lot of "at least"s through out this experience.

http://blazenfluff.com/the-power-of-empathy-animated-short-explains-the-difference-between-empathy-and-sympathy/

The Specialist

I saw the specialist today. I'll call her Dr. S. I was thinking I would be at the hospital quite awhile so I packed a lunch and loads of activities for Bean but I got right in, so that was nice.

Dr. S didn't really have much new to say that Dr. C hadn't all ready told me. Dr. S seems to think the fibroid will not continue to grow now that I am not pregnant. She confirmed that it does not have any features of a cancerous tumour so it is benign. She down played down its size though, saying it was around 7-9cms, which made me nervous because Dr. C let me read the actual radiologist report so I knew how big it really was. If I remember correctly,11.2x10.3x7 something. I think Dr. S, was looking quickly at the MRI itself and one side of the fibroid was 7 cms so maybe she was working from that? The result is the same regardless. 

The fibroid is in my muscle wall, on the top and to the left. I didn't want to hear that. I was really hoping it was going to be an easy to snip one. 

She told me if I wanted to get pregnant again I had three options:

     1. Leave it in and hope for the best. Apparently fibroids are mostly harmless and there are women with fibroids bigger than mine, living their lives and are not bothered by them.  I would be heavily monitored if I got pregnant as the fibroid would balloon again but there is a chance I could have a healthy pregnancy with it in but it would likely be a painful pregnancy and the baby would likely be breech, premature, and require a c-section to deliver. Dr. C and I all ready discussed this and she doesn't think I'd be able to carry a baby to term. I would like to avoid having another miscarriage, the risk is to high.  So NEXT...

     2. Take the new fibroid medication that is on the market. Apparently, it shrinks fibroids. Apparently, it costs $1000 a month and since fibroids aren't life threatening some drug plans don't cover it. Even if mine does, I could lose my health care coverage when I lose my recall. My thoughts: NEXT! 

     3. Open abdominal myomectomy - I'll be put to sleep, an incision will be made below my bikini line, my uterus pulled from my abdominal cavity (not cut out, just pulled out enough but still attached so they can look at it and work unencumbered), the fibroid removed, and my uterus put back in place.  I can expect to be in the hospital a few days and then sent home with painkillers. I'll likely be off work for 4-6 weeks. It is recommended I wait a year, ideally two, for my uterus to heal before I can try to get pregnant. My pregnancy will be monitored and I will likely need a c-section. There is a risk of bleeding that will require a hysterectomy and I won't be able to get pregnant ever. 

None of these options have me jumping for joy. However, I said I understood the risks and I wanted surgery. Like I said in an earlier post, part of me thought I'd have a hysterectomy by now most of my life anyways. Bean is my miracle and she is wonderful. If she ends up an only child, so be it, but I want to to try for two if I can. 

I have a rare blood type, A-, and asked if I could donate to myself. Dr. S says that doing this has gone out of a practice as it means I'll be anemic before the surgery. If you have A or O neg blood, donate for people like me! 

As for when the surgery will happen, Dr. S says her wait time for surgery is normally 3 months, maybe longer, for fibroids. I told her about my achy cold/numb left foot and that Dr. C thinks the tumour is compressing my femoral artery. She looked alarmed and did a quick abdominal exam. She said, that it was entirely possible that it was and that she would try to get me in sooner if she can. 

Now, I play the waiting game. Apparently, her office will call three weeks to a month before my surgery with a date, time and instructions. Hopefully, it will be sooner rather than later. 

Good news: I'm not laid up for the holidays. I can drink wine and eat soft cheeses. Plus, I get to finish the term at the school I am at, who have been wonderful about this whole experience. 

Bad news: I'm in pain, need to invest in compression socks, and will look like this for an indefinite amount of time:

People who don't know my story may look at me funny while I am eating soft cheese and drinking wine...

Laundry

I did 8 loads of laundry this weekend. I didn't get to it last weekend and when I did it before I didn't get to the bottom of the hamper. 

When I was folding things, I found myself thinking, "I was pregnant the last time I wore this." :( 

Plus, I wearing my maternity clothes to accommodate my ballooning fibroid belly. Because of the position of the fibroid it feels like kicking when food passes through different parts of my digestive tract.  It is so weird looking and feeling pregnant but not being pregnant. 

I forget than I am not pregnant anymore

sometimes. 

I bought a Doppler for a girl the day before I lost the pregnancy. I needed a few tops and a few days ago I noticed an add on Kijiji. It was the same girl. When I went to try them on she asked me questions about my pregnancy. She was so happy for me, I just pretended I was still pregnant rather than explain it is a fibroid tumour making me look like this. 

I am sad today. I just want a baby in my belly not a tumour. 

Productivity

I am tired but it was a productive day, despite a sleepless night worrying about my 22 month old daughter. She has a cold and I didn't like the sound of her breathing so I put her in bed with me so I could keep an ear on her. 

At work, since I don't know when my surgery will be, I managed to get a day by day plan written up for the remainder of the semester. I still have a little work to do as far as handouts and answers keys but I am more or less prepared for someone to come in an take over at any point if they had to. I'll feel guilty if I can't finish everything I want to but I am reminding myself that I am substitute teacher even though I feel like and have the responsibilities a full time teacher. I don't get the pay or the benefits of a full timer (I really wish I had the health benefits and sick leave right now.) so whoever, takes my place will just have to manage like I had to manage. They can plan, mark and make answer keys just as well as I can. If anything they will be pretty lucky because most of the work is done for them. And besides, at the current speed of my provinces health care system, I'll probably get to see the end of the semester myself anyways.

I am torn about my surgery. Part of me wants this fibroid out. ASAP. I am in a fair bit of pain lately. I put up my Christmas Tree this evening and it felt like my legs and back were being zapped by lightening. I am going to request to be put on the cancellation list because of it. However, I have grown attached to the school I am and the students. I will feel bad if my students end up having three teachers in one semester. I want to stay so they can have consistency. I know what they should know. I am worried about them bombing someone elses' exam because I may not have covered something or covered something differently. I hope if I am not in, whoever is in, will use the exams I make. Even if I don't get the answer keys made. 

Anyhoo, I should go to bed. Like I said, I worked hard today at school and then came home and decorated for Christmas. It looks cheery in my house! 

The MRI

When I left the hospital I was told that I would be back in for an MRI early the next week. My family had driven from their neighboring province to be with me. It was nice to have them around. They made me feel special and at home. We were looking forward to having the ball rolling.

 Monday the hospital called me with my MRI date: Friday, Dec. 13th. That seemed like a long time for someone to wait do find out whether the huge tumour in your womb was cancer or not. I hated the thought of waiting that long. I just wanted the whole process over.

I spent the next week home with my daughter, waiting for the miscarriage to complete itself. I was in pain, still looking and feeling pregnant and heartbroken thinking that something in my body killed two potential children who could have been as beautiful and amazing as my daughter.

Friday, Nov. 22nd the hospital called again with news that there was a cancellation and I was able to get in for my MRI Nov. 25th. It was a huge relief.

Monday, Nov. 25th I showed up at the hospital early and eager. All jewelry and nail polish removed, I waited a few hours for my turn. There was a medical emergency that delayed things. A man had a heart attack in the CT machine in the next room. Emotions were high. The nurses and techs were coming down from adrenaline when they laid me on the table. The table moved and I was crammed into the tight tube of the MRI machine. Only the top of my head was out. I was told to breathe as shallow as possible and not move. At times I had to hold my breath for 30 seconds. I could not even wiggle my toes for 1/2 hour as the tube made knocking and tweeting noise around my body.

Time passed quicker than I imagined. Soon it was over and they sent me home. They told me my results would be sent to my doctor and the specialist and to call them for an appointment in a week or two. I was really hoping I was going to find something out then. That maybe I would get to see it, but sadly, this would not be the case.

My doctors appointment was scheduled for today, Dec. 5th and my specialist appointment is Dec. 11th. However, Monday I felt sick and got into my doctor, I’ll call her Dr. C, that day. I normally would not have called her over what felt like a stomach bug but since I was recovering from a miscarriage I didn't want to take any chances. Apparently, I was super backed up and digested food was making its way back into my stomach. She doubled my heart burn medication.

Dr. C didn't have the MRI pictures but she had the radiologists report. Apparently, as of Nov. 25th, my fibroid was 11.2x10.3x9.7cms about the size of a good sized mango. It is pushing my organs to the right and compressing my bladder. Thankfully, everything is still functional despite the "distortion." I am experiencing heart burn and constipation, typical pregnancy symptoms as my uterus continues to grow. Besides the tumour which is pushing them to funny places (for example my left ovary is up near my left ribs), my uterus and ovaries appear perfectly healthy. This surprised me. I was sure they would find endometriosis. She didn’t say whether the tumour was on the inside or the outside but she said it was fully encapsulated and mentioned a branch that they will hopefully just be able to “snip” off so I think that means it is a “pedunculated” which means less cutting and a greater chance of keeping my uterus and having a natural delivery if I become pregnant in the future.

Good news: No lymphocytes which means no cancer! YAY! Dr. C. thinks I should be able to be “repaired” without compromising my fertility even though the report said my potential future fertility was inconclusive.

Bad news: The tumour is still growing. I now have a 20 week uterus. It is compressing my femoral arteries which means my back aches and my legs are sometimes cold, numb and sore. I am at risk of varicose veins, blood pulling and blood clots. My risks for stroke and embolism are higher now but my doctor swears the chances of this are still really rare. I don't know how common getting pregnant with twins while using condoms only to lose them to a gigantic tumour is so I am not a fan of the odd game right now.  

Hopefully, I only get good news from here on out. Less than one week from today, I should have a game plan!

A Beginning

I'll begin with an introduction.

I am a 32 year old woman. I have struggled with heavy, painful periods since puberty. In combination with my family history and my battles with IBS, it was assumed I had endometriosis. A large proportion of my female relatives have struggled with a variety of menstrual and fertility issues such as endometriosis, ovarian cysts, and fibroids. The majority of them had hysterectomies. A few, when they were younger than I am now. I can't say that I am surprised that I am facing fibroids now. It almost feels like a genetic destiny. 

In February 2011, I had my period for an entire month. At one point, so heavy I thought I was dying and went to the ER. The doctor on call had no sympathy for me. She told me I was getting old. It could be early menopause and sent me home. I was 29 years old. My family doctor was a bit more reasonable. She suggested an investigative laparoscopy and told me it wouldn't hurt to try for a baby now if I was thinking of having children. 

Much to my surprise, I got pregnant 4 months later. The laparoscopy was cancelled. We would wait and see how I was doing after I had the baby. 

My pregnancy was textbook. My uterus looked healthy. I felt the best I have ever had in my life. I didn't even have stretch marks. All was fine. Besides being in labour for 5 days because my daughter was sunnyside up with her hand above her head, all went well. I thought maybe I dodged the curse. 

This brings me to Halloween 2013. I was feeling off my game. I was tired and I just felt pregnant. I didn't think it was possible. Hubby and I were using protection. I took a test anyways. The thick dark test line showed up immediately. My first reaction, was a swear word. Where were we going to put another baby? How were we going to afford it? Hubby took it better than I did. Slowly, I got excited. 

I had to wait until Nov. 14th to see my doctor to confirm the pregnancy. In the mean time, I ballooned. There was no hiding the fact that I was pregnant from anyone. I began to get excited but something in me just would not let me bond to this baby like I did my daughter.

The day of my appointment, I went in thinking I was 7 weeks pregnant. My doctor examined me and said I had a 15 week uterus. We listened to a heart beat. The doctor thought she heard one. It didn't sound right to me. It didn't sound right to her either. She thought maybe it was two. She ordered an ultrasound for Nov. 29th and said, "My guess is that you are 11 weeks pregnant with twins." 

I was floored. Hubby was excited. We told people that night. 

The next day, a Friday, I felt off. I had cramping but I dismissed it as gas. It got worse. I called my mother in law, a nurse, around 7pm, asking if the local hospital had an ultrasound and would be able to look after me if I thought something was wrong. She said they would, but reminded me that cramping was normal. Specially, in second pregnancies. However, I started bleeding soon after I hung up the phone.

I told Hubby to take me to the hospital. I lost one twin as soon as we got there. I told them I thought it might be twins. They said I was measuring 16 weeks. The doctor did blood work. My levels were typical for 7 weeks pregnant. The doctor tried to see if there was another baby on the ultrasound. Instead of saying anything, he told me I had to go to the hospital in the city as he was not sure what he was seeing.

11pm, We made our way to the city. They ran more tests there but I had to wait for morning for an ultrasound. The ultrasound tech was kind but she had the saddest look on her face as she did the ultrasound. All I could see on the screen was a large dark mass. 

I said, "There is no baby is there, is there. That big round thing is a tumour, isn't it?" 

She said, "I can't tell.  There could be a baby but your right, there is a tumour in the way. I think it is a fibroid." 

The gynecologist confirmed the ultrasound tech's suspicions and pulled my other ultrasounds from my previous pregnancy. There was no evidence of fibroids on those ultrasounds. It was discovered that I had a spontaneous fast growing fibroid tumour. It was 10.3cms. I was now measuring 17 weeks pregnant. My uterus was growing a week in fundal height each day. There was no way I would be able to carry a baby to term. I had to go home, wait for the rest of the "tissue"( aka - twin 2) to pass and I was told they would schedule an MRI for early the next week. 

We hoped once my hormones leveled out the tumour would stop growing. Apparently, 98% of fibroids are benign. That means 2% are cancer. Apparently, the ones that are cancer grow really quickly.Mine was growing quickly. The reminded me that 98% are good odds. However, this whole experience, starting with conception, was against the odds. I couldn't wait for my MRI.

Unfortunately, I'd have to. 

Writing about my feelings makes me feel better. Reading about people who have had similar experiences to me makes me feel better. However, I noticed there are not a lot of women out there talking about their experiences with fibroids. Therefore, I have decided to write about my journey. Hopefully, someone will read my story and find comfort in the discovery that they are not alone.