Saturday, July 12, 2008

Long Post Ahead!



Well... I’ve already taken the liberty of changing our blog’s URL, it was a pleasant surprise that this was even possible!


In my first post below from a few weeks ago when we actually stated this blog, I mentioned that Justin and I were going to need to be very creative finding things to blog about...for the next little while I think we’ll have a good portion of our subject matter taken care of...careful what you wish for! :)


I’m going to try and keep this blog up to date not only for family and friends, but I will admit my intentions are mostly to keep a record of my own thoughts and feelings, as well as Justin’s.


Rewind

This all started back towards the end of April when I had some pain in my abdomen that was very similar to a bout of acid reflux I had back in college. At that time the doctor prescribed me some antacids and the pain went away within a matter of days, and as long as I was careful not to lay down after I ate I hadn’t had any problems since. This new pain seemed to be the same thing and after Tums, Pepto and other over the counter medicines didn’t help the pain I decided to see my family practice doctor. He agreed that it sounded like acid reflux or something of the sort, and gave me some PrevAcid samples to try. After only a few days the pain had gone away, only occasionally to pop up, but quickly solved by taking the PrevAcid.


Fast forward to the end of June when Justin and I were with my family on vacation in California. The pain started up again, and I attributed it to the greasy burgers, pizza etc that I had been indulging in during the week, or the fun time we had at Magic Mountain on the roller coasters (too much adrenaline for my stomach!). When we returned back to AZ I popped a PrevAcid and expected it to go away just as it had before.


We returned from CA on Monday, the next morning I was meeting my friend Stacey at the MCC track to run, but the pain in my abdomen was bothering me so much I couldn’t even jog...so we walked around the track and bleachers instead that morning. When I got back home I had my normal shake for breakfast, and proceeded to get ready for work. I had an unpleasant surprise in the toilet, but before I rushed to the doctor in a frenzy I decided to wait a few more ‘deposits’ to see if what I had seen was indeed what I thought it was. I used the “Nurse on Call” benefit through my insurance company to confirm that I was not over reacting and should indeed make an appointment with my doctor. The nurse that I spoke with was very concerned and would not hang up with me until I promised her that I would go see the doctor that day. I was able to make an appointment for that afternoon.


Greg is one of my new brothers in law and is now my doctor as well. He referred me to a GI specialist and told me that I had most likely just won myself a ticket to get a colonoscopy as well as an endoscopy to determine the source of my bleeding. He ordered a few more lab tests, made an appointment for me with the GI doctor on Thursday and gave me some new antacids to try thinking that I most likely had an ulcer.


The pain in my abdomen was bad enough that I didn’t feel up to going into work for the rest of the day, so I curled up on a ball and slept until Justin got home that evening. The next morning, Wednesday, the pain seemed to have gotten slightly worse, and it was really uncomfortable for me to be standing or even sitting, so in the fetal position I remained for the entire day. Justin and I had plans to leave the next day to go White Water Rafting with some friends over the long weekend in New Mexico, and we made the call to cancel with them. We were pretty bummed about the idea of being home instead of out having an adventure over the 4th. Thursday I thought I would try to go into work, but as I was getting ready I still felt the same, and decided I had better stay home.


The doctor appointment couldn’t have come soon enough; I wanted to find out wait this pain was and get rid of it! I met with Dr. Walker, who was very nice, and I thought very thorough. He examined me on the spot to rule out that hemorrhoids were the cause of my bleeding, and they were not. Pushing around on my stomach his thought was the same as Greg’s that I actually was by strange coincidence having symptoms of two separate problems, most likely an ulcer in my stomach, and colitis in my intestines, which is a fancy word for an infection. This is what he hypothesized was the source of my bleeding. He wanted to do an endoscopy as well as a colonoscopy while we were at it just to check out the infection there. With the long weekend coming up I would have to wait until the next week to schedule, and he was also going to be out of town, so I had the option of waiting for him to return and doing the procedure in two or three weeks or he would check one of the other Dr.’s schedules and see if they could get me in sooner. He told me that “I would probably have to be admitted to the hospital if I waited for him to get back,” so I opted to let his colleague scope me.


Having to wait those six days was rough, but I was even more discouraged when I woke up on Wednesday morning for the procedure and my pain was virtually gone! If you’ve never had a colonoscopy, or known someone that has, the 24 hours before your procedure you have only clear liquids, and then you have to drink the most awful solution that will completely clear out your insides. My mom volunteered to take me to the procedure since a driver is needed, so that Justin wouldn’t need to take time off of work. Dr. Collins would be the physician doing both procedures. Before they started to put me under he and I chatted. I told him about the pain having mostly gone, and he reiterated that he also believed he would find an ulcer.


I only remember a small portion of the meeting with the Dr Collins when I was coming out of the sedation, so the following is mostly what my mom relayed to me after the fact. The endoscopy (esophagus and stomach) appeared to be fine. There was no evidence of any ulcers or cause for me to be in pain. My colon however, in the words of the doctor, “was a mess...” He explained that he had found a “hemorrhagic, ulcerated mass in the hepatic flexure of my colon” (bloody and hard), and in his opinion it appeared to be cancerous. You can see where the Hepatic Flexure is to the left in the picture to the right, but this is on my right side. The results from the biopsy he took would either confirm or refute this. He put a rush on the pathology results and instead of waiting the normal 5 – 10 days we would have an answer the next day. He said over and over that what he found had completely taken him by surprise, you don't see colon cancer in someone my age.


Justin, my mom and my dad all accompanied me to the appointment on Thursday where the doctor read off the results from pathology. I also had several polyps, some of which he removed. He started with the good news that all but two of those tested positive for precancerous cells, and then confirmed what we were all hoping wouldn’t be true that the large tumor was cancerous.


Colon Cancer..... colon cancer? This is a short list of risk factors:


-Diets low in fruits and vegetables

-Diets high in red or processed meats

-Physical Inactivity

-Obesity

-Smoking

-Heavy Alcohol Use

-Diabetes

-90% of colon cancer patients are over the age of 50


It was not more than 2 months ago I was on my nutrition soap box at work preaching to a couple of my colleagues about the importance of eating plenty of fruits and veggies so they could keep their colons healthy...I guess my credibility is shot now? :)


Next items of business are having a CT scan to determine if the cancer had spread outside of my colon, to any other organs, lymph nodes etc. I also need to have more blood work done to try and nail down the origin of the cancer...is it genetic, a mutation etc etc. Then we would need to start meeting with surgeons, and depending on the results of the CT scan and other X-Rays an Oncologist if chemo or radiation therapy was needed.


Today I had my CT scan and I must say that is something that everyone should experience at least once in their lifetime...it gives you the feeling that you’re going to spontaneously combust at any second among other sensations! The results of the scan were not as positive as we’d had hoped. Again, I’m so thankful for the doctors, they have been expediting all of the normal wait times so we are not left on edge waiting for results. We were hoping that the cancer was contained inside my colon as this would most likely mean that a portion could be removed and that no chemo or radiation would be needed, however the scan showed that had perforated to the outside, and that there is “involvement of the liver” as well. My doctor did not have the results in front of him when he phoned, so what “liver involvement” means exactly I won’t find out until I meet with the surgeon on Tuesday.


Colon Cancer is characterized by its severity using "Stages" 0 - 4. Zero being the least and 4 being the most advanced. Here is a diagram that illustrates the criteria for each stage.





Full staging will not take place until I have an actual surgery...however it doesn't take a doctor to see that because of the growth outside the colon wall and 'liver involvement' I'm either stage 3 or 4. I've never been one to back down from a challenge, but I would have been happy with 1 or 2 in this situation!!


Writing this out has been very therapeutic. Obviously this doesn’t have many of my own internal thoughts, it's mostly just the happenings of the last two days. I have been thinking plenty.... I still haven’t wrapped my mind around the situation yet, and I probably won’t until we get further into treatment discussions etc. When I arrived at the imaging center for the CT Scan today, it was my first time having to verbalize to a stranger what my situation was. Normally when I fill out medical background forms I skip right through the “past diagnosis, conditions” and so forth. Today I had to stop on the line that says “Cancer” and admit to myself that this is real. That is a hard thing to do because aside from the pain that is back, and not having my regular appetite, I feel like regular old Susan. If I had a little more energy I’d like to go for a run after this test, or get back to planning my next trip abroad! That’s all on hold right now...maybe I’ll feel different when I’m missing half of my large intestines? I don’t think I ever even noticed it there in the first place...hopefully I won’t even tell a difference. :)


While I was getting my chest x-ray today the tech asked me,

“So what are you in for today?”

I choked up a bit when I said, “I was just diagnosed with colon cancer and we need to see if it has spread...”

“I’m sorry.” Was her reply followed by a very sincere remark,

“You’re way too young.”


All I could do was shrug and try to hold in the tears.


Tonight as Justin and I were eating dinner, it was the first chance we’ve really had to sit and talk about our feelings and what we are going to do. Naturally the conversation turned to “Why?” After about 30 seconds we decided it was a pointless conversation to continue. My answer is that it doesn’t really matter, and I’ll drive myself crazy in the meantime trying to figure it out. Yes, I don’t meet any of the known risk factors, and I’m only 25, but for whatever reason this is mine to own now. It may sound crazy to say this, but I really do feel blessed by so many of the events over the last few months, and I know that Justin and I and our families will continue to be blessed through whatever course this takes us. In future posts I'll try to share some of these that aren't too personal.


I’ve thought back over the years of people I have known who have overcome cancer, as well as some who fought the good fight and didn’t make it. They were inspirations to me before, but their stories have a whole new meaning to me now. I really don’t have to look very far to find people who have had to deal with cancer, or any other horrible diagnosis for that matter. No one is really ‘safe’ and in an odd way that makes it easier to wrap my mind around what is happening. By the way, I'd love for you to share any stories of family or friends that you have who have had cancer, and any insights you'd like to share with me on how to stay positive, homework to do, foods to eat etc etc.


Thank you all for your messages of love and support. I am so lucky to be surrounded by two loving families and a host of friends that I know care deeply about me. We'll come out on top of this, I promise :)

20 comments:

Ben said...

Susan... I just cannot believe all of this and after reading your most, I mostly cannot believe how awesome you are! You are in our prayers and once again an inspiration to all of us!! We love you Suz!!!

Mike Steph Brooklyn and Carter said...

Suz I love you tons and am so grateful you have this blog so we can hear things from you. Your blog goes to show that nothing can bring you down, that's what I love about you. I will be praying for you like crazy and know everyone else will too because you are so loved!

Our Family said...

Soos & Justin,
We love you so much and want you to know that! We are so grateful you have such wonderful families to lean on right now and we know you have even more friends who love you tons. Thanks for keeping us posted on how you are. We have been anxiously waiting to hear how you are doing. Let us know if you need ANYTHING. You guys are in our prayers. Love you lots!

Adam and Jessica Cooley said...

Hey Twinner...I just wanted you to know how much I love you! We are all rooting you on and will always keep you in our thoughts and prayers. You're an awesome girl and a wonderful example of courage, faith, and so much more. Thanks for setting the bar so high!

ajbourne said...

Susan, I am so glad I am able to keep track of you through your blog. To say that you caught me by surprise is a bit of an understatement. I can tell you that the power of positive thinking is real and that you are in my thoughts and prayers. You are so loved and looked up to.

Heidi said...

Hey Sune! I love that you are blogging this for everyone. Everyone wants to hear from you and to know that you are doing okay and that you still are the 'same ole susan' that we know and love. It's comforting to all of us on the outside. ;) It is very informative as well! I love the name of your blog too! You guys are awesome! You'll get through this! One day at a time! :)
Heidi

Amber said...

Definitely excited about your having a blog --and I love the new name. :-) I loved the story you told us yesterday about "It's Game time!" It is so true. Everything we have learned up to this point on faith, hope, prayer, fasting and obedience was all just practice. This is the real stuff. This is when the opposition will be trying to bring us down--but we will show him!

Lauren Porter said...

Susan.. thank you for sharing the details with us. I am sure it is hard to put it into words so thank you for telling your story. We are praying for you and love you. You are a fighter!!! Lauren Walters

zm said...
This comment has been removed by the author.
zm said...

Suz,

So glad that you are blogging, you have an amazing spirit and we are blessed to be able to read about your experiences.

I saw this video a couple of weeks ago, I'm sure you'll find yourself singing the catchy tune as you spend time waiting in doctors' offices this week :)

Cody and Britt said...

Susan,
I came across your blog and just had to let you know that we're praying for you too!! I heard about this from my dad but its nice to see updates on your blog!
Lots of love,
Brittany Willis

Jenny Lynn said...

Susan.. I am so glad to find your blog. I've been hearing your story from lots of people, but it amazing to hear it in your own words. You are truly amazing. I love the name of your blog too, I can't even imagine what you are having to go through and would never wish that luck on anyone. If anyone can do it, you can. Our prayers are with you and your family... Thank you for sharing your story!

Unknown said...

Susan,

When I heard what happened I was shocked. I didn't know the best way to reach out to you and to let you know that our thoughts are with you. I think it's amazing that you're providing a full diary to your experiences- it takes strength, courage and character which I know you have in excess. It's these characteristics that will help you through this along with the thoughts, prayers and support of your friends and family. I know that your story will be an inspiration to many others who face challenges but may not be as strong in spirit.
Please know that our thoughts and prayers are with you and your family.

Nick Kagal

Anonymous said...

Susan,

To say I was shocked when I heard your news is putting it mildly. Cindy and I are praying for you, Justin and all your family. Your way of dealing with this terrible situation is truly inspirational. It may be that many of us write similar kinds of things to you in our notes but that is OK. You have touched many people and so many people are praying for your health.

Kyle said...

Susan...you are such a strong person. I will have you in my prayers.

Anonymous said...

I don't know you Susan. I am a friend of Lisa Mortenson's. She posted your blog address and I just want to tell you my prayers are with you and your family at this most difficult time. You are so brave and you will be blessed for it! sincerely Valerie Nordin

NatAttack said...

Your attitude and optimism are an inspiration to all of us. Words are trite in a time like this, but please know you're in my prayers! XOXO.

Unknown said...

Hello Susan,
First, congratulations on your semi-recent marriage. I know I'm a little late, but I just heard. It would have been nice to congratulate you under different circumstances but congratulations nonetheless. After I heard the news, I was reminded of a sermon I once heard in church. The pastor said that God does not give us more to deal with then we’re able to handle. While I can scarcely imagine what you’re going through, I’m also inspired. Judging from the updates on your blog, the words my pastor spoke are certainly true and you are an incredibly strong person. No doubt, your strength and courage will be a key factor in carrying you through this incredibly difficult time. While often difficult to understand, I believe there is a purpose behind events in our lives such as these. I hope in time, when this is behind you, that the reason becomes clearer. Kim and I are praying for you and your entire family and we wish you a speedy and full recovery.
Eric & Kim Owens

Unknown said...

Hi Susan,

I am on vacation in India , was just browsing the emails and Bruce email caught my interest. It was indeed a shock to me. Dont loose heart at all. God is there with you all the time.

Everything will be alright and my family's thoughts and prayers are always with you. God Bless you.

Padma and Arvind

andrea said...

Susan, I've been thinking about you tons. I got Taylor's message on facebook and have been praying and fasting. I saw a relative of yours when I was visiting Arizona at the Temple. I saw Mortenson on his tag, it was weird when I had been thinking about you so much. He was a temple worker, and said he was related to your family. Anyway, my point is I hope you are doing well and that you will get good results and beat this. You have always been so strong, I know you have it in you! Take care and I will keep up on your blog.