The Last Few Years

It feels funny to write that title. I can hardly believe that it has been years since I have been on my blog. This used to be a refuge for me, and I took comfort in the ability to write about my illness, infertility, and life in general. Then, my daughter was born, my sister passed away, and life became hard, busy, and sometimes quite depressing. 

Over the last few years, I've struggled with such varying feelings. I have felt the very lows of depression and anxiety where I have been unable to leave the house, and I have felt the immense highs that occur as you watch your beautiful child accomplish something new or give you the biggest hug as she tells you she loves you more than anything. In truth, even with all of the high moments my daughter has given me, the last few years have been downright hard. 

My sister lost her battle with cancer at the end of December in 2014. It has now been three years since I last held her hand, hugged her, or heard her contagious laughter as it filled a room. The first two years, I felt like a zombie moving through the motions as I learned how to somehow cope with her absence in my life. Over the last few months, I've finally just now begun to really feel like my "old self" again. I still have my days when I feel the sadness of loss overwhelm me, but they are few and farther between than they have been, and while a part of me feels angry that I'm allowing myself to feel happiness, I also know that my sister wouldn't want me to live my life sad. So I've been pushing forward, and the one thing that has kept me grounded is my beautiful little girl.

My daughter, Sydney, is now almost 5. She'll turn 5 next month, and she is beyond excited to celebrate her birthday with a My Little Pony theme. She is so intelligent, one of the kindest kids I've ever met, and so very sweet to others. She's also quite smart, and has a great sense of humor. I know I'm biased, but she's pretty darn amazing. She's currently in her second year of preschool, and her teachers have said that they will be so sad to see her go to kindergarten next year. She's ready though. She knows all her letters, and she is even reading and writing some words. I'm amazed by how much she has learned. She is the light of my life, and I'm so blessed to have her.

Two years ago now, we were actually pregnant with a second baby. We were both so excited and we couldn't wait to have a sibling for our little girl, but sadly I had a miscarriage just shy of twelve weeks. It was another blow that led me into a worsened state of depression and anxiety as I learned how to accept the loss of our baby and move on again. We had everything set up to try and carry another child yet again, but sadly, in November of last year I wound up hospitalized, and it changed the game for us. 

Last year, Sydney brought home every germ imaginable as she triumphed through her first year of preschool. Everything she brought home, I managed to catch, and before I knew it, I was really struggling. My CF team and I made the decision together that it was time to call in reinforcements and I received my first hospitalization in 12 years and my first round of IV antibiotics in 8 years. It was hard for me to mentally accept, but I knew I was doing what was best for my health.

During my hospitalization, I wound up doing 3 different IV meds. At first it was Merepenum, Tobi, and Vanco. I then ended up culturing C. Diff. while in hospital, and the IV meds were changed from Merepenum to Zosyn. It did help my lung function and my energy as these drugs kicked in and took care of the high levels of pseudo and MRSA I was carrying, and before too long I was sent home on a PICC with a home health care nurse coming out to help me.

The very first night I was home, the home health care nurse came and set up a schedule for me to do my drugs. She then gave me IV Tobi, even though I had already had my one dose for the day, 10 hours prior. Shortly after, I started feeling very odd and different. I called my team and they suggested I might be dehydrated so I chugged gatorade and rested, only to feel worse a little later. They then suggested I head into the hospital again to be checked out. As blood tests came back, we found out I was in kidney failure. I had been given two doses of Tobi in one day, when I should have been given one, and it was too much for my body. I was then readmitted to the hospital to sit and wait until my kidney levels bounced back. The doctors were shocked, as it took nearly a week before we saw them start to drop. 

I made it out of the hospital just before Thanksgiving, but the doctors told me that it was no longer wise for me to carry another child. With the CF, the diabetes, and now damaged kidneys (they did bounce back, but pregnancy is hard on the kidneys and mine have taken a big hit now), it was simply too risky. Obviously, I have a beautiful daughter, and I can't risk not being here for her to try and have another child. This also was a huge hit to my mental health as I struggled with the depression of never carrying another child again. 

The last year, thankfully, has been a much better year. While we did manage to pass around EVERY sickness again this year, including Influenza A (it was TERRIBLE), I managed to stay healthy and out of the hospital. I haven't even had a course of oral antibiotics this year (knock on wood). I would say that the biggest reason for this has to be my improvement when I started the new CF drug, Orkambi. Once we knew that I couldn't carry a child anymore, we immediately started me on Orkambi as we had held off only due to pregnancy. It was a game changer for me. I handled illnesses so much better, and I saw a 6% increase in PFTs. My last FEV1 was 82%. Unfortunately, I did have a lot of side effects from Orkambi. Higher blood pressure, higher blood sugars, increased depression and anxiety, horrific GI issues where I'd be in the bathroom 8-10 times a day, and issues with ovarian cysts (I have to have surgery this coming summer to get rid of them). It was worth ALL of those issues to be able to breathe better and handle illnesses better, but it was a host of rough side effects. 

A week ago, I made the transition from Orkambi to Symdeko. I'm now 8 days in, and while the first week was quite rough, I'm doing better now. At first, I experienced a lot of shortness of breath and a horrible headache that lasted around the clock for days, but now I'm feeling really pretty good. I have more energy than I did on Orkambi, and for the first time in a year, I'm only going to the bathroom 1-2 times a day! I'm hoping the positives of this drug keep up. We'll see what happens as it continues, and I'm curious to see how it impacts my lung function, but I'm hopeful. 

<3 

Still Doing Well

I know I have been quite sporadic when it comes to blog posts, and it has been far too long since I have shared anything. To be honest, life has been quite crazy around here, and the time for me to blog is quite limited to even non-existent. I'm trying to make a commitment to myself to update once a month at least, even if it is very brief. I have received several e-mails in the past few months asking if I am okay because readers worry when a CFer goes dormant on a blog for awhile. I appreciate their kindness, and I don't want to worry anyone so I plan on holding myself to this goal as much as I can.

With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.

Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.

18 month photos and Christmas photos as well.

Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.

Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.

I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then! 

Today. . .

I'm 10 days into my Lupron shots and a week from tomorrow will be my baseline ultrasound and blood work. I've noticed that I've been a bit emotional, but not overly so. Also, I have a daily headache..behind my eyes. It's not too bad, but it's noticeable. Being 10 days into the cycle, my mind has begun wandering to the idea of a positive pregnancy test, and I keep trying to not get my hopes too high.  Today, however, has been an AMAZING day so I've let my mind wander as much as it wants.

Why was today amazing, you ask?

1) I began my day by getting some AMAZING news about a dear friend. The news I got made my whole week, and I nearly screamed at work. I was just SO excited for this person. I love hearing good news about my friends/family.

2) I worked with my favorite co-workers today and the day went pretty quickly which is ALWAYS a good thing.

3) My sister's follow-up appointment at Northwestern went extremely well, and the doctors are so pleased that they do not feel the need to see her again. They told her she is welcome to start chemo whenever she wants. AMAZING!

4) My husband had planned a sweet romantic day to celebrate our anniversary.  He's booked massages and has a nice place picked out for a dinner afterwards. What a true sweetheart I have!

5) I dreamed about positive pregnancy tests alllll day today. I read forum after forum about when people got their positive tests following their transfers. I calculated my test date/due date. I did it all.  Then, I started to worry that I might be over-suppressed or over-stimulated this cycle, and it might just get cancelled. I also started to worry that my lung function will be down so they will decide to cancel the cycle to put me on IVs. Then..I told myself to stop worrying and enjoy my dreaming..so I did just that. I went back to dreaming about what that positive will look/feel like when it eventually comes. If everything goes JUST right..hopefully beginning of August! :) 

Sister is Home, and IVF is About to Begin

I want to thank everyone for their thoughts, prayers, and good vibes for my sister. She is back home and doing very well! The early indicators show that the liver is regenerating which is fantastic news. I am so grateful for everyone's support through the weeks leading up to surgery and the surgery itself. It has been a stressful last week, and I'm grateful that my sister is doing so well.

Ellen will have to do more rounds of chemo once she has healed enough from the surgery, but chemo seems like an easy road compared to what she just went through. She's just so happy to be alive and be home..it's refreshing to see her looking so well.

As for IVF, it's right around the corner now. I ended up having my ultrasound test and mock embryo transfer on Monday, and they went over every single one of the injections at that time too. It was a bit overwhelming, but at the same time it feels less confusing than it did prior to the injection training. The ultrasound looked good, and apparently I have a, "beautiful uterus," which hopefully means a healthy home for the baby! The mock embryo transfer didn't go quite as smoothly, and it took the doctor quite some time to be able to get the catheter in. We will have another mock embryo transfer the day of the actual transfer just to make sure everything goes as smoothly as possible.

I did have to have another ultrasound to check up on my blood clot. As long as it comes back ok, and I get the clearance from the doctor, I will begin injections on Tuesday!! It's crazy to imagine that it's finally here. I'm so excited for it, and I just can't wait to get through egg retrieval! I'm ready to be pregnant!!

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.

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! 

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:

http://www.caringbridge.org/visit/ellenburkett

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.