Tuesday, March 27, 2012

Holding Off on IVF

After March 6 turned all my family's lives upside down, I've been trying to put as many pieces back together as possible. Today is my day to actually write a new blog post. I figured it was as good a time as any to update you all on what's been happening over the past month.  Let's start with my sister and then move on to fertility and other things.

Almost immediately after my sister's diagnosis, she had a port put in so that she could receive chemo easily and can also have blood draws done without a million sticks. She loves her port already, and I'm sure that the feeling will only get stronger as the treatments continue.

Last Monday, Ellen started chemo and the first treatment went really well. She has a 4 hour chemo followed by a 48 hour chemo every 2 weeks. The first treatment usually goes pretty well for people, but the effects of chemo are cumulative so we will start to see more side effects as the treatments continue.  Other than just feeling extremely tired very easily, she has been feeling well so far!

Obviously, we've all been under a completely overwhelming amount of stress. I've done decently well handling the stress (better than I thought I would actually). I can easily say that the week of March 6th was the worst week of my life to date, but I managed to weather it without getting sick. I lost about 5 pounds total, but I've been gaining it all back.  I also am starting to feel sick now, but I think it's mostly allergies. My eyes are burning/itching, and I'm coughing much more from tickles in my throat. Again, I think it's allergies. As I expected, The one area that was definitely affected by the stress was my cycle. I ended up having a 29 day cycle last month....normally my cycles are 36-40 days! It was QUITE odd to have a "normal" cycle for a change, but I think the stress caused it to start early.  We'll see what this cycle does.

Again, due to the stress and the situation, we've decided to put off IVF treatments for now. We realize that we have a time-frame for having children, but if we're both stressed a pregnancy won't go well.  We are going to continue TTC naturally, but we'll see if I end up getting anywhere with that method.  I've also decided to try IUI prior to IVF as long as we can do it with a minimal risk of multiples (unmedicated IUI cycles).  So, I'll definitely keep you all updated when we decide to go along with IUI.

I will say that my sister's diagnosis allowed me to feel grateful not to be pregnant for the first time since we started TTC.  I was so glad I wasn't pregnant because I know I wouldn't have weathered the diagnosis without something bad happening. I probably would have wound up in the hospital on IVs. It's crazy when you look back at things and see God's hand in everything. I love that feeling.

So, as we end the month, we're hoping and praying for successful chemo treatments which shrink the tumors very quickly, and we're hoping for a natural pregnancy! My birthday is on Saturday so we'll be celebrating that, and that's the start of David's spring break! It should be a great upcoming week! 

Thursday, March 22, 2012

Ellen's CaringBridge Page

We have finally shared the news on Facebook about Ellen's diagnosis, and we have also set up a CaringBridge page for her. You will have to create an account to view her page to follow her, but I wanted to make it available to those of you who wished to know how she was doing. I'm not going to post every update on this blog (her CaringBridge page will be the most updated), but I will probably post the major updates.  Here is the link:


Monday, March 19, 2012

Best quote I've read in awhile...

My sister-in-law posted this on her page just the other day, and I thought with all that is going on right now, it was the perfect quote to share.

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” 
― Elisabeth Kübler-Ross

My sister is starting chemo today. She is extremely nervous, but she is so strong, and I am so impressed by her strength.  Thank you again for bearing with me as I take this break from my regular blogging.

Monday, March 12, 2012

Spending Time (UNMASKED)

Just a quick post.  I'm currently trying to spend as much time with my parents and sister as possible. Once the chemo starts, I'm required to be in a mask whenever I'm anywhere near my sister. Since I culture MRSA and P.A., we can't risk her getting either of them.  I know that this is going to be extremely hard for me. I won't be able to eat in the same room as her and will have to take frequent breaks while visiting her to get some fresh air.  I am so grateful, however, for inventions such as skype and facetime for the iPhone which I fully plan to utilize.  I have always been a very touchy-feely person, so I'm going to struggle with maintaining my distance from her.  

Saturday, March 10, 2012

Update on my Sister

I won't be blogging much (I don't think), but enough people know now that I can post on my private blog.  My public blog will not have this post, and please if we are facebook friends do not post any specifics because not all of my family knows yet and they do not need to find out from Facebook.

My sister went into the hospital on Tuesday because she was having extreme abdominal pain (to the point where she couldn't move) and was passing blood in her stools.

They did a CT and found lesions on her liver and swollen lymph nodes which are indicative of cancer, but it was not confirmed at this point. They automatically started setting her up for a scope.  When she began the prep for the scope, they couldn't get the prep to stay down (she kept vomiting) so she had an NG tube put in..we were hoping that would be the most invasive thing she had done.

During the scope they found a large tumor in her colon. They could tell right away it was cancerous and did appear to be the primary site.  They biopsied it and they also did a liver biopsy the next day.

On Thursday we were told my sister has Stage IV colon cancer. She is only 36 and our lives have been turned upside down as it is incredibly hard to believe this is happening.  She has everything going for her though: She is healthy (other than the obvious), she is happy and has a lot to live for, she is a fighter, she has extra reserves weight wise, and she WANTS TO FIGHT.  We are fighting this and we will beat it, but we are in desperate need of as many prayers and good vibes as we can get.

Yesterday she had a port put in and she will start chemo on Monday.  This morning my mom was taken to the E.R. due to passing blood in her stools as well.  She had a CT done and they did not find any cancer, but she does have collitus (sp?) and will be going on prilosec and getting scoped soon. Thank God that she appears to be cancer free.  I will be getting scoped soon as well for obvious reasons.

Please pray for my family. We are all under a tremendous amount of stress. My CF is acting up due to the stress, my mom's MS is acting up due the stress, my dad is the rock of our family and therefore is not sleeping, and obviously my sister needs the most prayers of all.  We are grateful for support, good thoughts, and prayers.  We are optimistic but please know that there many be periods when I blog a lot and periods when I don't blog at all.

Thank you.

Wednesday, March 7, 2012

A Hiatus in Blogging

To my dear readers (who mean the world to me),

I just want to let you all know that I am not certain when I will be blogging again.  My family and I are going through a rough time and I 1) don't feel like writing at this point and 2) need to be there for my family.  

If you are the praying type please know that we need all the prayers we can get right now.  If you believe in sending positive vibes or thoughts, please bombard us with them.  We believe in the power of prayer and good wishes.  

If you are the type who would like to pray with a name, we are praying for my sister and her name is Ellen.  

I thank you all in advance for the support, love, understanding, and obviously the prayers.  

Thursday, March 1, 2012

End-Stage Cystic Fibrosis

I debated about whether I wanted to write this blog for a little while this morning.  I decided, ultimately, I want to share my thoughts about this topic.

A few weeks ago, I had heard from some of my English friends who also have CF, that a documentary was airing about a 21 year old CFer, Kirstie Mills.  Kirstie was in the end-stages of our disease and was placed on the transplant list.  During her time on the transplant list she was also planning her wedding, sure that no matter what the outcome, she wanted to spend the rest of her life with the man she loves.

This is going to sound terrible, but when I first heard about it, I was somewhat relieved it wasn't playing in the U.S. because I didn't think I could handle watching it.  I have known one person very closely, who has gone through transplant, but I never saw him prior to that. I'm going to be 100% honest right now and say that it terrifies me to think about the end-stage of this disease. I don't like thinking about not being able to walk without oxygen, or not being able to do the normal daily things that I currently take for granted.  I am petrified about the changes that come with end-stage disease.  So, I was glad I didn't have the option to watch it.

Then, I found out it was being aired in the United States under the title, Breathless Bride: Dying to Live.  Suddenly, I had to face the decision of whether or not to watch it.  I, sadly enough, chose not to watch it when it aired last night on TLC.  I just didn't think I could emotionally or mentally handle it last night. I didn't even DVR it.

This morning, I woke up and realized that I needed to watch it.  My sister-in-law had seen it last night, and I was honestly kicking myself for not watching it as it aired on the television.  After preparing myself for the tears that I knew would come, I found the link for the youtube version of the show, and I watched it in its entirety.  Yes, I cried. Yes, a lot.  But, there was more to it than that. I was truly, honestly, inspired by Kirstie's story. She maintained a sense of hope and optimism through the entire transplant process.  She showed me that while the end-stage of this disease are just as terrifying as I imagined it to be, it's not hopeless.  There are days that are better than others, and there is still love and hope and happiness during that time.  It's just always overshadowed by the hardship of breathing.

Kirstie's story had a very happy ending. She has received her new lungs and is doing wonderfully! I want to remind my readers one more time that CF effects every single person differently.  Kirstie needed a transplant at 21, but there is also an 84-year-old man living with CF.  CF is not a disease that can be easily defined.  That said, the following video provides a wonderful look at what the end-stage of CF looks like, and what it is like to be on the transplant list.  I hope you take the time to watch it, think about becoming an organ donor, and also think about making any sort of donation (time or financial) to the Cystic Fibrosis Foundation.