Very Short Update

Very short update here as I have to be getting to work. I have neglected putting dates up about my IVF cycle because right after finding out about starting my Lupron injections, I also found out my right arm has a blood clot in it.

3 weeks ago, I had an IV for the colonscopy and had some issues with the IV. Sure enough, it decided to form a blood clot, and I am now on blood thinners for it. Ultimately, it's good that they caught it and are working to resolve it, but it does delay things on the IVF front.

I'm not sure how long the IVF will be delayed, but I should find out in the next day or two.  I'm just waiting to hear from my CF doc and then my R.E. It's irritating to be so close and then have another setback, but I do want to be in the best health possible for pregnancy, and a blood clot probably isn't a good way to start the actual pregnancy process.

On another note, I saw my sinus doctor yesterday, and everything looks good in my nose so I have avoided surgery yet again. I also saw a cardiologist for the clot, and for general sign off before pregnancy, and she told me she is 100% fine with me getting pregnant! YAY!!

So some bad news and good news all rolled into one! I will update when I know more!

Also, just saying prayers for my sister as she is supposed to get her latest PET scan results. This will be what determines if we go through with surgery on June 12 or wait and do more chemo. She decided to take a spontaneous road trip to Charleston, South Carolina...I think she needed to get away and stop thinking about it all.  

Big Decisions!

So, I got the call back from my R.E.'s nurse at U of C with the list of dates. I am supposed to start injections on June 26th and will have my egg retrieval the week of July 23.  She told me that I would be starting on Lupron injections the 26th of June.

Being my cautious (some may say paranoid) self, looked up the side effects of Lupron, and now I'm not so sure I want to do this. I react badly to drugs a LOT, and the side effects of Lupron are no joke. Basically Lupron is a drug used to treat Advanced prostate cancer and it has been called by some, a "poison" as the side effects can be serious. It is also used to treat endometriosis.  It is used off-label for IVF (basically, it's not one of the "approved uses" of the drug), and it is VERY common practice to use it in an IVF cycle. To see the side effects please go here.  This list is similar to the others I have found across multiple drug sites.  Basically the drug will shut down the pituitary gland from producing the LH hormone, thus ensuring that ovulation does not happen prematurely. It sounds like a good idea, but the horror stories (and yes, I realize they are rare, and they are titled "horror stories" for a reason) make me nervous.

As I said, I react badly to a lot of drugs, and many of the "horror story" reports state that patients who have taken Lupron have experienced irreversible effects from the drug. It also has side effects of high blood sugar (I already have diabetes) and is used with caution in individuals who have a prolonged QT interval (which I do). Needless to say, I'm nervous. I actually called the doctor today to see if there is a way to go about the IVF cycle without this drug (Waiting to hear back from them).  There's just something in my gut which tells me NOT to go on this drug. It may be fear, but my gut usually doesn't steer me wrong. If I can't find an alternative way to go about this process, I may just go back to naturally trying because I just don't feel comfortable taking the Lupron...even if it is for my dream of being a mommy.

Anybody out there with any ideas or who has used Lupron for IVF? I'd love to hear from you!

Let the Process Begin!

Well . . . . after MONTHS of tests and waiting and more tests and more waiting, we are finally starting the IVF process (eek!).  I began my birth control pills on Sunday, and sometime today or tomorrow I should receive a call with the dates for the ultrasound test/mock embryo transfer, injections training, start date for injections, and egg retrieval date! Talk about crazy!!

I have had my fears as we started everything. I feel like I didn't have to be worried when there wasn't a chance of anything happening naturally, but now there's a chance so the fear has set in. Here's a few of the things that have been on my mind

* Can we handle a child? Really? Can we?
* Will I maintain my health during pregnancy and after?
* Will we be ok with just one baby? What happens when we want a second one?
* What if I can't control my sugars in early pregnancy?
* Do I really have to go through the injections and egg retrieval? These two things seem quite scary to me.
* What if IVF doesn't work?

I think these fears will change throughout the process, but many will remain. Hopefully I will find that injections and retrieval aren't nearly as bad as I'm imagining them to be!

I'll keep you all updated, but nervousness and excitement has definitely taken over for me! :)

A Stressful 24 Hours

Wow..what a long 24 hours this has been. I am so glad that I have decided to keep a private blog because truthfully, I don't need everything being shared to the public, especially in regards to my sister.

Wednesday was my sister's scheduled scope. The doctors were wanting this done to prepare them for surgery so that they had a better idea of what they were facing on the actual surgery date. Unfortunately, my sister did not get cleared out at all from the prep, and they had to use enemas to get her cleared. Then, once they were in, they could not get past the tumor. At the initial diagnostic scope, they noted that the tumor was almost blocking the large intestine. Whether the tumor has grown or whether this was due to a bowel blockage and inflammation, we are unsure. According to the surgeon, the current tumor measures about 5 cm, but since I am unsure of the previous size I do not know if this is progress or not.

My heart sank a bit when I found out this information, but since the doctor stated that the June 12 surgery was still on, I took it as overall positive. Then, recovery started...

As is standard in any surgery or procedure, during recovery the nurses are hoping for a stool to pass or at least gas. Unfortunately, my sister was unable to pass anything. It was soon determined that she was facing something many CFers face multiple times: a bowel blockage. The fear started almost immediately when hearing this, and I found myself in prayer the majority of the night. The doctors stated that if Ellen did not start passing gas/stool, she would be taken in for emergency surgery to remove the blockage. Obviously the words "emergency" and "surgery" do not ease minds when they are stated, and my entire family sat on edge for twelve hours...waiting...and waiting..and waiting.

My sister was surrounded by family, but I was unable to go up there. Due to the chemo, Ellen is in reverse isolation which means they really don't want this MRSA, P.A. culturing cyster to be up there. Truthfully, not being there to hold her hand and tell her I was there was the hardest thing I've done recently. I struggled to keep it together as I awaited news from my parents because the only way I was able to go up was if she was having to go through emergency surgery. Even then, I wouldn't have been able to see her, but I could be there with my family.

The night dragged on as observation continued, and the news stayed the same. I finally fell asleep and got  a few broken hours of rest before waking up Thursday morning. Immediately, I was on the phone with my parents who told me that she had gone to the bathroom a tiny amount, and her belly was less bloated and no longer hard. I could have screamed with happiness. Truthfully. Thankfully, emergency surgery was avoided, and we could breathe a bit easier.  Then, the surgeons came in and gave my sister a LOT of hard choices.

Basically, the fact that her bowel has had a blockage is not good news because a repeat occurrence before June 12 is quite likely. The surgeon explained all the various ways they could handle this situation (for lack of memory and for brevity, I will only explain the one she chose), and my sister was left to make the difficult decision of what she felt was best.  She chose to have the G.I. surgeons go in and put a stent in the bowel. This stent would open the bowel up so that the likelihood of a blockage happening again would be greatly reduced. Worst case is that the stent gets dislodged and a blockage does happen, in which case we are no worse off than we were Wednesday evening. Best case scenario is that this stent gets her through til June 12 so that the surgery can happen.  If she ends up with a blockage and has to have emergency surgery, she will have to wait ~6 weeks for the liver surgery and then another ~6 weeks for chemo to start.  This, to us, is not a good solution as Ellen needs chemo to kill off all the cancer cells. Therefore, choosing to go through surgery for the stent seemed to be a smart decision to Ellen.

The next decision she made was that following the colon/liver surgery on June 12, she will have an ileostomy. This will be able to reversed 6 - 12 months later following the chemo. The reason for this decision is because there is a 10% chance of leaking after the intestine is fused back together. If leakage happens it can be months before chemo can start, and again this is not a good solution to us. Therefore, Ellen chose to minimize the risk by opting for the ileostomy. I truly am so proud of her as I know it's not the decision she wanted, but as she told me on the phone, "I can live with an ileostomy for 6-12 months if it means I get to live." She is truly my hero...

The stent was put in yesterday evening while I was at work (talk about a rough few hours), and it went well without any complications. She is now recovering at Northwestern Memorial where they will do an X-ray this morning to check that the stent has stayed in place. If everything looks good, she will be released to go home. I'm just so grateful that my sister is alive and doing well. I truly am blessed to have her, and I can't imagine the world without her smiling face and her indomitable will.  Although it has been a SUPER stressful 24 hours, the outcome has been so very happy, and we couldn't be more grateful.

Nightmares

I rarely have nightmares, and for that I am grateful. Since my sister's cancer diagnosis, however, I have found myself having more frequent nightmares which cause me to wake up in sheer panic. Last night was one of those. I had been sleeping soundly and I started dreaming of the character Wilson, from the TV show House.  I had this dream about him screaming at the top of his lungs to everyone around him that he hated cancer, and then his face morphed into my face screaming that I hated cancer, and I woke up. It probably doesn't sound too terrifying to read about, but I could tell I was emotionally upset in my dream with no indication of why. I then found myself having to calm myself back down to get back to sleep. I'm not sure what the dream was about, but I know I didn't enjoy it. I think my fears of my sister's upcoming colonoscopy and surgery are seeping into my dreams.  

Cancer is terrible :( 

Publicizing our Infertility Journey

So, when I decided to make our infertility journey public, I realized I would need to write a post describing how I got my diagnosis, what our options are, and where we are with the process. I've published that post and it will follow below, but mostly it's a recap of what has been posted on this blog before.

Late last year my husband and I found out that we would (more than likely) not be able to conceive without the help of infertility treatments. When I first heard the news, I was devastated. I went through a few different emotions, including feeling worthless, because as a woman I felt it was my job to bear a child; if I couldn’t do that naturally, what was my “purpose?” Yes, it probably sounds silly, but an infertility diagnosis is hard to swallow. It took me a few months to be really ok with it, and I’m still nervous about the journey that lies ahead of me. What follows is a small snippet of the journey we have been on with this diagnosis, and an update on where we are in the process now.

***If you are squeamish about terms like uterus, eggs, sperm, or cervix please just skip this post. Also, I am not  in any way, shape, or form dispensing any medical advice. Please see your doctor for any concerns with fertility.***

To begin, how did we get diagnosed with infertility? We began (like almost all couples) by trying to start a family naturally. I had always been concerned that I might not get pregnant naturally though (a gut feeling), and so I began talking to my doctors about this concern early on. I began with my local OB who felt that with actively trying and charting my basal body temperature (a technique many women do when trying to conceive) we should see results in six months.  I then spoke with my CF team (who had given us approval for having a baby quite some time before) and was referred to a high-risk OB to establish a relationship prior to getting pregnant.  At the high-risk OB appointment, the doctor suggested that we get a baseline ultrasound just to see how everything looked.  Upon review of my ultrasound, it was determined that we would probably not be able to conceive naturally. The ultrasound showed that my one ovary was filled with cysts and they couldn’t find my second ovary at all. This led my high-risk OB to immediately refer me to an infertility specialist.

The infertility specialist, or R.E. (reproductive endocrinologist), met with David and me and upon reviewing the ultrasound came to the same conclusion as my high-risk OB.  He then began discussing our options with us. It was a long appointment, filled with information, but I left feeling that I firmly grasped the options we had before us since he broke them down into laymen’s terms so well. Basically, we were told that we had a few problems going against us. The first was the anatomy of my body, and the second was my CF. With my CF, I produce thick, sticky mucus that builds up everywhere.  Therefore, any number of things could be blocked with this mucus.  We were then told we have two different options: IUI (intrauterine insemination) and IVF (in vitro fertilization). Let me explain the two briefly.

IUI – Intrauterine insemination allows the doctor to take the sperm and bypass the cervix. In other words, the sperm is deposited into the uterus allowing for greater likelihood of sperm meeting egg. Typically, a woman is also given Clomid or other drugs to ensure egg production and ovulation. IUI is much less invasive than IVF, and it is typically the first step in an infertility diagnosis. Also, IUI has a high risk of multiples. Basically, with IUI, the doctor is not able to easily control how many eggs are produced and thus the risk of multiples is higher. Kate Gosselin (Jon and Kate plus 8) used IUI and wound up with sextuplets.

IVF – In vitro fertilization allows the doctor to fertilize the egg outside of the body resulting in higher success rates due to the fact that the “sperm meeting egg” part of the equation is already taken care of.  With IVF, a woman is given hormone injections for a length of time to allow her body to produce a LOT of eggs. Then, the woman is put under anesthesia while the doctor goes in and removes as many mature eggs as possible.  The eggs are then fertilized with sperm in a laboratory.  The doctor will then transfer a predetermined number of embryos back into the women’s uterus (the unused embryos may be frozen depending on the couples wishes) to maximize chances of conception. With this procedure, the risk of multiples is controlled. Yes, many women have had multiples with IVF (think octomom), but that was due to a doctor putting in too many embryos. 

After explaining the risks and benefits of each procedure, the doctor told us his thoughts but said it was ultimately our choice. Our R.E. stated that he wants us to go straight to IVF due to the lowered success rates of IUI combined with the higher chance of multiples in IUI.  He stated that with IVF I will be only implanting ONE embryo at a time which means ONE baby as my body could not easily carry more than one.

David and I debated over and over again about whether or not to try IUI first, but we ultimately decided to go straight to IVF since the overall success rates are higher and the chances of a multiple pregnancy are GREATLY reduced. My doctors have been overwhelmingly supportive about me carrying a baby and becoming a mom, but my time frame of “optimum” health is dwindling away pretty quickly which is why it’s even more important to try the higher success option first. 

So with that decision under our belt, a variety of doctor’s approvals were needed prior to starting the process. As of last month, we finally got our last approval letter in which means we are set to begin the IVF process in the next month or two. It’s crazy to have waited so long and now it feels so..all of the sudden.

For those of you with objections or concerns about the IVF process, please know that while I respect them, I would ask you not to voice them. I understand why people have objections with the process, especially on religious grounds, but until you have been in this situation, I ask that you not judge others who are going through it.  As for concern over my health, I understand and am greatly appreciative of prayers and good thoughts sent our way. That said, I have NORMAL lung function and my diabetes is in REALLY GOOD control. I’ll have a high-risk pregnancy, but I’m in the best time of my life to carry a child. Also, please know that ALL of my doctors have signed off on this saying that I am perfectly fine to do this, and I will be monitored to the extreme during the entire pregnancy. Again, prayers or good thoughts are appreciated, but as this is written primarily to help others who may suffer from infertility as well, please refrain from posting any negative commentary as it is a sensitive issue to myself and to the other thousands of women who struggle with an infertility diagnosis. Thank you.