The Return of the Endo Cells

I've been a bad blogger. The demands of a medically complex newborn and an equally medically complex almost 6 year old have left me with little time to blog much less anything else other than quick Facebook status updates.

About two weeks post-partum, I got that familiar feeling, and no, it was nothing good. The intense stabbing, cramping and gnawing feelings left me not only breathless and speechless, but laying on the floor in a ball unable to move. Its made me nauseous and sick to my stomach. I was hoping that it was still my body adjusting to the end of the pregnancy. No such luck. It was the familiar pain of having endometriosis. The pain was located in the exact spots that I've had the pain before; around the kidney area in my back, the utero-sacral ligaments, and then just the lower pelvic area in general. To add insult to injury, you can also see the "bruising" the endo has left on my torso area thanks to the likelihood that it's endo cells in the muscle lining. Of course I don't have confirmation that it is the endo causing the bruising since that would require a biopsy of the torso area and not something that I would want to do, especially since they can't really do much other than medications for that area. But the bruising does get more intense with each cycle that I have.

I met with my RE (Reproductive Endocrinologist for those who aren't up on the shortenings of the medical professionals) for my 6 week post-partum check-up. The hemmorhagic cyst on my right ovary is still there, which leads him to believe that it was an endometrioma but we had to do my CA125 test to rule out ovarian cancer since I have the history of estrogen-based cancers. He also did a biopsy of the cervix as it appears that I have abnormal cells there which bled when touched. He also discovered a fibroid which he believes went undetected because it was hidden under the placenta. We finished the appointment with my favorite procedure of all (ok, not really), the endometrial biopsy. I got scheduled in the following week for the D&C (dilation & curetage) and to have a LEEP (Loop Electrosurgical Excision Procedure) done just to be on the sage side with the cervical cells.

So I had the D&C done, which is where they "scrape" out the uterine lining. This was done to remove any cancer cells that might be in the endometrial lining. I then had the LEEP done. It was right up there with the endometrial biopsy in terms of being my not so favorite procedures. Because I haven't had luck with birth control pills for treatment, we decided to go back on my trio of medications; the Mirena IUD, Arimidex (an aromatase inhibitor) and the norethindrone acetate (a progesterone only birth control pill). I've started back on the Arimidex and the norethindrone, and have an appointment on Tuesday to get it inserted.

I've also been back to my pain management doctor. He started me back on my Cesamet (nabilone) to help with the pain. Since adding it to the Lyrica that I take daily, I have been for the most part, pain free. It has been an amazing feeling. I know that the drugs only mask the pain, but it allows me to be able to function without fear of passing out from the pain or being in the bathroom all the time throwing up from the pain. I'm thankful for the break, however long it may last, since it has been so long that I haven't been anywhere close to pain free, and also because I have so many appointments for my son and daughter, as well as my son's birthday coming up in the near future.

And that is the update on the battle against my endo cells.

A Chloe Story

*Warning to my friends with fertility issues, I will be putting a picture or two at the bottom of the post*

As last noted, Chloë had once again gone into the breech position so my doctor had again scheduled the version procedure (where they attempt to turn the baby manually) and a possible c-section. The

doctor was successful at turning her after a failed attempt (he was determined he wasn't going to do another c-section). Chloë was born October 1st at 10:30pm weighing an astonishing 6lbs, 10 ozs. The doctor was very shocked that she was this big since they had thought she would be about half of that. Chloë refused the lactose-free formula that we had bought, and started out on just regular formula.

Fast forward to two weeks later - Chloë started having diarrhea and blood in her stools. We made our first ER trip. We were referred to

a consultant pediatrician who diagnosed a milk allergy and based on our family history along with her symptoms, likely either Crohn's disease or IBS. At this point we switched her to Alimentum formula which is already broken down making it easier for her to digest. At our follow-up appointment, the pediatrician essentially dismissed our concerns saying that she was always going to have pain and bloody stools. I was so not impressed. At this point Chloë was having 20-30 bowel movements a day. You could literally feel the formula hit her stomach and come out the other end. The diagnosis of Crohn's was quite hard on me, I went through several periods of feeling guilty since I also have this invisible illness.

Chloë is now 6 weeks old, over the past week she has had more pain. About 4 days ago, she started having problems with passing bowel movements. She would strain until her eyes bulged and turned purple. She would scream out while passing any gas and her bowel movements decreased to 2-3 times a day. Yesterday she started to poop green and developed a rash. I made the 4hr round-trip to Sick Kids Hospital where we were seen right away. They gave her an ultrasound, and said that there were no blockages. Her bloodwork came out fine. The on-call gastro-enterologist determined that she has a reflux problem, explaining why she often chokes during and after feedings. The acid from this could be causing her pain. They thought that the rash could be a potential protein allergy, and if it doesn't clear up, to ask the family doc about it.

It's heartbreaking to see your child in pain and not be able to do anything about it. Luckily she has a mommy who understands.

Now meet Chloë Rae Kristin:

The Fertility Journey: Oh How Things Change

What a difference 4 days makes when it comes to plans. I saw my OB earlier then my regular Thursday appointment this week because he managed to snag more OR time. Which is likely a good thing. I must admit, I love my OB. He takes one look at me and knows exactly how I'm feeling despite my cheery demeanor. He asked how I was coping with the pain and I honestly told that I wasn't coping, I was existing. Which is the truth, for the past few weeks I have been existing. I try everything to keep my mind from the pain, but the sharpness of it all forbids me from being able to avoid it completely. And yet, I am still adamant that if I could go through with it all again, if I knew it wouldn't seriously jeopardize my health again, I would do it in a heartbeat.

So anyway, we discussed the possibility of doing an elective induction, but when he went to check the positioning of the baby, he learned that she has once again decided to do things her way and is now laying transverse and there are some worries about the cord becoming wrapped in her body should she shift in an awkward way. We have decided to try to use his surgery time on Thursday to try to turn her, and if successful, induce labour right away. If not successful, I will end up with a c-section.

I'm thrilled to the core that there is once again a light at the end of the tunnel. I am worried about her size, but from here on out what will happen, will happen and I just must go with the flow. At least there is no chance of them cancelling this time around since I won't see him again prior to tomorrow's surgery! I will have to see the perinatologist (high-risk internist) though who has been helping me get through all of this as she has some concerns for my post-partum health. Mainly, we need to make sure that my thyroid levels go back to normal as I am at an increased risk of being diagnosed with Grave's Disease. We have to make sure that the fainting and blood pressure problems return to normal or else I will need to see a cardiologist. But aside from all of that, I'm concentrating on the fact that tomorrow I will be a second-time mommy to a beautiful, sweet little girl who will be showered with love to help her grow strong.

Fertility Journey: Changing Plans

It's slightly ironic that my last post was a letter to my unborn daughter Chloe on the topic of challenges. I'm now facing one of my hardest challenges yet, making it through each moment.

September 26th was supposed to be the day that our little 3-some of a family made the transition to a 4-some. In an instant, that all changed. I went to the OB on Thursday and the results of the growth ultrasound that were told to me over the phone, were for a different patient. Chloe remains small. They have cancelled the c-section in favor of having me carry her as long as possible in hopes that she'll gain whatever weight she can before spontaneous labour occurs (which could be anytime - I'm going on 38 weeks).

It's bitter-sweet news. I know that it's best that she remains where she is and comes out as healthy as possible. At the same time, I'm also going through a very difficult time with the increase in pain. As sick as I have been this past summer with needing the 3x weekly IVs, I'm feeling much worse even now. I've been passing out an increasing number of times, unable to sleep, ... The pain is exhausting. The nerves in both of my legs are compressed, which makes me legs burn with pain down to my knees, and then my feet go numb. Not conducive to being able to walk to make sure that Jacob gets to the right school door in the morning.

I'm also having mixed feelings about the c-section that was supposed to have happened because it was an earlier opportunity to see exactly what's going on inside of me. Instead, assuming that I'm able to have a natural birth (which is a huge assumption), we'll have to wait until the 6 week post-delivery mark to get the endometrial biopsy done and then decide which treatment course to follow. The doctor will likely do a D&C (dilation and curettage) at that time to make sure all the cancer cells have been removed. Still, what's going on inside remains a giant fear.

In any case, I'm still hoping that labor occurs anytime in the near future, but at the same time, just hoping for a healthy little Chloe :)

Dear Chloe: A letter on challenges

Dear Chloe,

One of the happiest days of my life was when I discovered that I was going to have another little jumping bean in my life. You were a very much wanted gift, so much so that your brother even put in a special order to Santa Claus for you to join our family. There were tears of happiness in everyone's eyes when we found out that you really were going to come to join in our life.

Chloe, you are such a dream come true for us all. We had thought that it wouldn't be likely for our family to expand due to mommy's health issues, only to find out that miracles DO come true. I want you to know that your mommy has fought very hard to make you the healthiest little bean possible. You have proven to everyone that you are a fighter. You are going to be born with enormous strength and to get through whatever life should throw at you. I only hope that your battles teach you more and more about yourself, that's the purpose behind the challenges that we shall meet. Every experience, every random meeting can teach you something about yourself and the world if you take the time to look deep inside of it.

Along your way, you will meet challenges. Dr. Seuss, a great children's author, in Oh, the Places You'll Go said "I know you'll hike far and face up to your challenges whatever they are". He also went on to say that you would encounter things that might scare you and make you not want to go on. I want to tell you that for those scary parts, I'll try to be there to hold your hand through them, whether physically or virtually. I want to tell you that you'll make it through them with ease. My greatest challenges have been my health. I've had more than my fair share of doctor's appointments and medical tests, along with diagnoses thrown at me. I hope that you never have to encounter any of these, but if you do, know that you will have an understanding mommy to stand right there beside you.

Your life is already filled with so much love and you haven't even arrived to the world yet. Know each and every day that you are loved. I hope that you never have to feel alone, but if you do, that you can remember that mommy always and will be forever right there in your heart to make you less alone.

Chloe, I love you with all my heart, now and forever, just as I love daddy and Jacob with all my heart.

Love,

Mommy.

The Death of a Super-Hero

As most of you already know, Patrick Swayze died of cancer last week at the age of 57. I have spoken on occasion about my admiration for Randy Pausch, who during his battle with cancer continued to inspire and give hope to many others. Patrick Swayze is another one of my health battle heroes.

When Patrick was diagnosed with advanced pancreatic cancer, he was given mere months to live. A lot of people upon hearing this prognosis, would accept their fate and might sink into depression. Not Patrick. Patrick rallied his strength and determination to live well with this disease and went on to live another 20 months. This is an astonishing long time given the fate of most people who have a similar condition. Patrick worked hard filming a new tv series, The Beast, and nursing his spirit at his beautiful ranch home. Patrick was very connected to nature, which no doubt gave him some additional strength to get through his battle, and was an avid conservationist.

I really enjoyed reading Entertainment Weekly's article on Patrick's life. Specifically how they talk about his courage to battle his pain without pain-killers so that he could continue to work as "competently" as possible without the mind-fuzziness that painkillers can create. This takes a huge amount of courage, strength, energy... I can't even imagine. I know what my life is like without pain killers, it's not pleasant nor easy. When I came off all my pain meds to try to conceive, each day I felt like I was in a train-wreck. It was exhausting physically and mentally for me. Its not that I am addicted to pain meds, quite the opposite, I would rather not have to take them period. But it's that I need them in order to function. In order to be a good mother who can keep you with her children and provide for them, I need to take pain medications to have some quality of life and be able to provide a quality of life for the others I am responsible for. I couldn't imagine Patrick doing all that he did without taking pain medications. However, it does show what great lengths he went through to be able to provide for his fans, to be able to honor his contract with the television series he was filming, and likely, to provide him with something to focus on during his battle other than "just his battle".

The closing line in EW's article, a quote from Patrick himself: “Dance is a metaphor for life,” Swayze told EW in 2005. “You’re born. You peak. Your physical body goes downhill, but your spirit stays intact.” is absolutely beautiful. This quote embodies what I've felt about Patrick's battle since he shared with the world his diagnosis. He had a great spirit which soared no matter what he faced. I can only hope that wherever Patrick's spirit is now, that he is dancing and free of the pain he must have endured. Rest in Peace Patrick, your spirit will be missed here on earth as you join the legion of super-heroes.

The Fertility Journey: The End is in Sight

I've been a bad blogger. Unfortunately I haven't had the time to post an update in quite awhile as to what's been going on with Baby Chloe and myself. I am now 36 weeks pregnant, the end is near.

We have stopped the 3x weekly IV treatments as I have been swelling in my legs quite noticeably. Since stopping the IV treatments, I've felt even more dizziness and have had a few fainting episodes.

Baby Chloe is doing well, although she is predicted to be a small baby, hopefully somewhere between 4-5lbs by the time birth comes around. I was told a few weeks ago that Chloe has "Intra-Uterine Growth Retardation", a term that is scary enough sounding to send the most calm of us parents-to-be into a frenzy. I had blamed myself, but I do know that I have taken every precaution to provide her with as good of "growing environment" as possible. Chloe has also decided to be much like her mommy and do things "ass-backwards", she wants to enter the world bum first. Given her small size and the fact that the cord is underneath of her, we have decided to try to turn her into a head first position and then do an immediate induction of labour, or else a c-section if not successful on Sept. 26. She will be 3 weeks early at this time, but as she isn't putting on weight and given my health, she is more than ready to come out to meet the world. They are preparing for the possibility of an NICU bed.

Yes, the end is in sight and it's going to be a beautiful ending for all of us :)