Wednesday, May 30, 2012

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!

Tuesday, May 29, 2012

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! :)

Friday, May 25, 2012

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.

Monday, May 21, 2012


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 :( 

Thursday, May 17, 2012

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.

Tuesday, May 15, 2012

My Scope and My Sister's Appointment

Wow. What a BIG week for my family.

Last Thursday, I attended my CF clinic while my sister met with her surgical oncologist. It was a stressful day, to say the least. I was a nervous wreck as I did my PFTs (Pulmonary Function Test), anxious to hear what the surgeon was telling my sister at a nearby hospital in Chicago.  I was anxious that my lung function would go down from the stress of the last few months, I was anxious about getting the approval to go ahead with infertility treatments next month, and I was especially anxious about whether or not my sister was all set for surgery to remove the cancer. I also had nothing to eat that day as it was the day before my colonoscopy and I was only allowed to have clear liquids.

For starters, my body is stronger than I previously thought. Even with the stress of my sister's diagnosis, my father-in-law's passing, and my great-aunt's passing, my lung function stayed stable. I was 85% this time (86% last time, which is considered unchanged).  I was STUNNED. I never expected to be this high, but I was grateful. My oxygen was also at 100% on room air, and I sounded nice and clear. In addition, my doctor didn't even hesitate when she told us to go ahead and start infertility treatments next month. Needless to say, it was a good appointment. My mom and I left thinking, one down, one to go.

We headed back home to change really quickly and then headed to the local hospital. I was to be admitted for my scope prep due to the fact that I have a prolonged QT interval, and the doctors felt it would be safer for me to be on a heart monitor while doing the prep. I wasn't thrilled about being admitted, but I went along with it. This was my first time overnight in a hospital since I was 17.

I checked myself in, and I prepared for a long night of prep.  Basically, I had to drink two 16 oz glasses of a strong laxative, and then follow that with 64 ounces of water. The prep tastes horrible, and the laxative effects aren't fun, but it's well worth it to get checked out when you have a family history of colon cancer. The first half of the prep didn't go so well for me as I didn't take anti-nausea meds prior to starting it. Once the nausea meds were on board, I was fine to finish it. The second half of the prep went just fine since we let the meds kick in an hour before starting the prep.  I didn't feel queasy once, and I was able to keep it all down without an issue.

The scope showed that I had a polyp which was removed during the procedure.  I wonder how long it would have been inside of me if it hadn't been for my sister's diagnosis. I had no pain, no issues, and no reason for a scope aside from my family history.  The problem with polyps is that they have a tendency to become cancerous. This is why they are instantly removed when they are found during a colonoscopy.  I'm so grateful that it was found and removed!! Due to the finding of the polyp, I will have to repeat my scope in three years to make sure I am still doing ok.

As for my sister's news. . . .we actually found out about my sister's appointment about four hours into my hospital stay. The surgeon said that he wants to go ahead with surgery in early June!! We're so happy that they are setting up for surgery and will remove the tumor from the colon!  The plan is to cut out half of the liver, and remove a good portion of the colon. It will be a big surgery, but my sister is a fighter and she will come through it with flying colors! The other half of my sister's liver is in FANTASTIC condition, which is great because it gives it a higher chance of regenerating once the surgery is complete. The only problem is that in order to prepare for surgery, my sister has to stop chemo. The surgeon said that they will do a scope and a PET scan the day of surgery, but if anything has spread the surgery will be cancelled and she will have to go back to chemo. He called this a "leap of faith." As we await the beginning of June, please keep my sister in your prayers and thoughts. We're praying that the cancer does not spread anywhere else so that the operation can take place!

Wednesday, May 9, 2012

A Few Big Days

Thursday is a BIG day. 

Tomorrow, my sister and I both have doctors appointments. My sister is heading to see a surgical oncologist to talk about whether or not chemo has shrunk the tumors enough to attempt surgery.  I am so excited and thankful to God to be able to share with you all that my sister's largest tumors have shrunk by about 20% following 4 chemo treatments!! We are stunned and excited, and we can't wait to hear what the surgical oncologist says this Thursday. Hopefully, it will be the time to do surgery and get it all out of her body. Then, we can continue with chemo and get her cancer in remission! That's the goal, and I will be sure to update on our progress!

A picture of me and my sister (maid of honor at  my wedding).

Tomorrow, I also see my CF team. Normally, I don't consider this a huge appointment.  It's normal; it's routine; it's typical. From the last appointment to now however, my body has gone through a tremendous amount of unusual stress. While I didn't get physically ill from the stress, I am anxious to see how it impacted my lung function. I'm hoping that my lung function is still in the 80s, but I'm concerned that it won't be. We'll just have to see. I also am curious/anxious because (in my own opinion) my lung function determines whether or not we go forward with infertility treatments or not this coming month. If it's down a decent amount, I will be holding off on the treatments, but if it's stable or up then we are good to go!

After I get home Thursday afternoon, I begin my prep for my colonscopy as well. I'm not looking forward to the prep, but it's necessary and I'll be happy to have the scope out of the way by Friday evening. I'll blog about it and make sure to take pictures as well.  So, as I go into the day I'm hoping for good news all the way around! I'll keep you updated :)