My Sister’s Journey

If you had ever told me that my sister would be going through things that CFers usually go through (getting a port put in, having an NG tube, and a few other things), I would have laughed at you. The sad truth, however, is that she is having to go through all of this and more due to her cancer diagnosis. I am not going to explain everything which has happened since the diagnosis as it is a long story, but I will explain the highlights.

On March 6, our lives changed forever. My sister was admitted into the hospital due to abdominal pain, and upon completion of a CT scan, we found out that there were lesions on her liver. She was immediately set up for a scope, and the next morning we found out there was a large tumor in the colon. The colon and liver were then biopsied, and we anxiously awaited the results.  On March 8, the doctor came in and told us that Ellen has Stage IV colon cancer.

Needless to say, our lives were flipped, and things that used to matter suddenly didn’t have any place in life anymore. I found myself going through so many different emotions including guilt and anger. Immediately, however, I knew we were going to fight this. What I didn’t know at that time was just how strong my sister is. 

I’ve always known my sister had a strength that couldn’t be denied, but seeing her go through this battle with such faith, courage, and dedication has truly impressed me and inspired me. Up until this diagnosis, everything had always centered around me as I was the “sick one.” It truly never crossed me mind that my sister would ever have to fight a battle like this as I foolishly felt that I have fought enough for the entire family. Yet, here we are, fighting away and hoping for remission soon. And boy has she fought. From day one, there was a dedication and a fire to her that I can’t exactly put into words. Things that I was worried about for her to deal with, she has taken in stride and just kept going. She has changed her entire diet, and she has maintained a positive attitude throughout. She’s ready to be cancer-free and to help others who are going through this journey. Talk about a hero…she truly is mine. 

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Since the immediate diagnosis, we’ve had a hiccup or two. Overall, however, it has been pretty good news. After just four treatments, the chemo worked to shrink the liver tumors by 20-35%!! Also, where the liver tumors are, they feel confident they can cut them all out and she will still have half her liver which will hopefully regenerate itself with time. This news as incredible to hear, and we were so excited to learn that the doctors feel surgery is a good option at this point.

In fact, surgery is scheduled for June 12. On that day, the doctors will go in and take out half the liver and a good chunk of the large intestine in order to get as much of the cancer out of her as possible. It’ll be a big surgery, but I know my sister has the strength to fight all the way through it! From there, chemo will start up again and will continue for 6 months or a year, depending on what the doctors decide. The goal here is to take out the big tumors on the 12th and then kill off any rogue cancer cells that have spread to other areas of the body. 

Needless to say, if you are the praying type we would appreciate any extra prayers you can spare as she continues through this journey. Good thoughts and well wishes are also VERY appreciated! It’s been a rough few months for my  family, but I’m anxiously awaiting the day when we can say my sister is cancer-free! She and I have her wedding to plan and a trip to Disney in our futures!! 

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Our Infertility Journey

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.

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! 

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 🙂

Things to Look Forward to

First, I still owe three blogs: one about my sister, one about my father-in-law, and another about infertility. I’ll get to those. But FIRST..I want to write about what I’m looking forward to over the next few months.

1) My sister’s tumors being removed! I’m not looking forward to her having surgery, but I’m excited about the fact that the tumors will be GONE! We will find out more about surgery on May 10, so I’m looking forward to that day as well. Hoping for GREAT news!

2) My CF appointment on May 10. I’m interested (although anxious) to see how my lung function is doing. I’ve had more stress than ever before in my life and I’m curious to see if my lung function has tanked or stayed about the same.
3) Infertility treatments starting soon. We finally got our last letter of approval for infertility treatments and therefore we’ll be starting them (barring no more red tape gets thrown our way) within a few months!
4) WEDDINGS! This is the year of weddings! We have three weddings we’re looking forward to before the end of the year (one of which we are honored to be standing up for).  I’m so happy for all of the couples. I love weddings, and I love to see true love celebrated!
5) The arrival of a new niece or nephew!! Ahh babies! 🙂 That’s really all that needs to be said, but I’ll include that I’m so excited to have another Murray running around in October!!
6) Working with my sister to plan her wedding and our trip to Walt Disney World. Ellen’s engagement happened awhile ago, but now it’s time to start wedding planning (one of my favorite things to do)! Also, we’ve decided that when she goes into remission, we are headed down to Florida to spend some time with Mickey! It will be the first vacation we’ve ever taken together (without parents), and we’re both REALLY looking forward to it! 🙂
Honestly, we have SO much to look forward to over the next year or so. I love focusing on the blessings we have, and we truly have been greatly blessed.

Sporadic Posting (and Reading)

For the past few months I’ve been such a terrible blogger! I’ve either had too much sensitive material that I can’t (or have chosen not to) write about, or I’ve been too busy! My reading of blogs has fallen by the wayside as well. I catch up on posts here and there, but I’m not the dedicated reader I used to be. I feel so bad about those facts, but I also know they will continue to be the trend for at least a month or two. The reason for this lack of writing/reading now comes down to a lack of time. Two weeks ago, I started up a part-time job working 24 hours a week. This was a necessary change for us because when our insurance deductibles/copays doubled, our ability to live off of one income vanished! With working 3 days a week, I’ve been using my other 4 days to clean the house, cook meals, go grocery shopping, do general errands, get a bit more sleep, visit family, and spend time with my husband. All of that has left little to NO time for websurfing or blogging. In fact, I used to be a Facebook nut, but I’ve checked it a handful of times in the past two weeks now!

 

Realistically, it will take me a month or two to really get into a good rhythm with balancing work and everything else which is why the posts will be sporadic for the time being. I hope to get into a good balance of 1 post a week once I start getting time worked out.  Today, I’m up early doing my treatment prior to heading up to U of C for a diabetes appointment. I figured I could use this peace and quiet time of nebbing to write the blog.  Usually, I spend my nebbing time reading now as I have lost a significant chunk of my reading time.  I may have to start alternating reading/blogging time during my treatments. Hopefully, that idea could catch me back up with my friend’s blogs and with maintaining mine as well!

 

So overall, expect approximately weekly postings from me for the next month or two, and then hopefully I can pick back up to a better pace!

March 2012: One of the Most Difficult Months

I can’t believe that it’s been nearly a month since my last post, but then when I think of everything that has happened it makes sense.  At first, I was avoiding blogging because family needed to know what was going on with my sister prior to the world finding out.  After that, life got pretty busy and pretty tough extremely fast.  I guess the only place to start is at the beginning. . .

Around midnight on March 6, 2012 my sister went into the hospital due to excruciating abdominal pain. Immediately, the E.R. staff performed an abdominal CT which showed lesions on the liver and swollen lymph nodes. She was promptly admitted and scheduled for a colonscopy the following morning. Upon completion of that, they found a large tumor in the colon which was biopsied.  Although it had yet to be confirmed by the biopsy, it was pretty obvious by that point that my sister had colon cancer.  Due to the tumor in her colon, they also biopsied her liver to discover if the lesions there were cancerous or not as well.  The results came back that those lesions were also cancerous, and suddenly we heard the term “Stage IV Colon Cancer.”

Our lives were completely flipped upside down that day and almost instantaneously we became familiar with words that previously never entered into our conversations “Chemo, radiation, oncologist, Folfox, Avastin, cancer,” etc. Things moved pretty quickly after that, and she has already had two chemo sessions and has met with a surgical oncologist up at Northwestern. I will post more in detail about what’s going on with her within another post.

Due to the diagnosis, life was pretty hectic for David and me, and we were trying to spend as much time as possible with my sister.  Just as things felt like they were returning to a somewhat regular pace, we learned on March 29th that my father-in-law (David’s father) passed away unexpectedly from a heart attack. The news was shocking, and yet again our world was flipped upside down.  We immediately headed up to Michigan so that David could help his brother with arrangements. Then we came back to Illinois, and returned to Michigan a few days later for the wake and funeral. My father-in-law was a great guy who always complimented me on my writing and my personality. He took the time to make sure I knew how special he thought I was, and I will always be grateful for that. In the very near future I will be writing a dedication post to him.   

Life has been difficult since then, and we miss him dearly each and every day.  We have been trying (yet again) to reach that sense of normalcy that we once had.  Sadly, while trying to recover emotionally, we found out that my great aunt passed away on Good Friday. We will be attending her wake and funeral tomorrow evening and Friday morning respectively.  

To say that March was a tough month would be the understatement of the year. March was extremely difficult on us, and we clung to each other harder and more often than we ever have before. As sad as the situations have been, the one benefit is that our relationship has become stronger than ever before. I know, beyond a shadow of a doubt, that we will handle whatever is thrown our way as long as we are together. It’s truly amazing to feel that love and that bond with your significant other; it’s beautiful in spite of all the heartache.  

In addition to all the sadness we have felt, we have talked extensively and felt that it was time to share the other big issue we have been facing lately. Late last year, after trying naturally to conceive a child, it was discovered that I have infertility and that we will need to go through some sort of fertility treatment to manage a pregnancy. The reason I have chosen to share this is because I unfortunately do not believe that enough women talk about this, and the subject is seen as very “taboo” in our culture.  Sadly, because of this many women feel alone and frightened throughout their journey.  My hope, when I began this blog, was to help someone else in some way, shape, or form. If I can possibly help someone who may also be going through infertility to not feel as alone, then I will have succeeded in my goal.  The scope of an infertility diagnosis and what our options are is too large to condense into this (already long) post, and therefore it is yet another topic that I will be writing more thoroughly about in the near future.  When I write about infertility, I will not be giving all the details and specifics, but will share my journey as much as possible.  Please bear with  me over the next few weeks as I begin to blog about all that has been going on, and please don’t hesitate to e-mail me or comment with any questions you may have!

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Words we have been living by recently...