Saturday, December 13, 2008

Funeral Program, Bruce's Talk

We became aware that many of those who attended Susan's services on Wednesday did not receive a copy of the program. Here are images of the outside and inside program content. Click on the images to view them full size. Special thanks to Vicente for the layout, we think it is beautiful.






Here is the text of Bruce's talk from the funeral:


I would like to speak on three words: Faith, diligence, and action. In doing so, let me explain a few core beliefs of the Church of Jesus Christ of Latter-day Saints that Susan held dear to her heart.

In the book of Hebrews, the Apostle Paul refers to God as “the father of our spirits.”
As Christians, believe that our Heavenly Father truly is the father of our spirits, and we lived with Him before we were born into this life. Because He loves us and wants us to enjoy all the blessings of eternity, He created this earth and the opportunity for us to live by faith in Him, much like a parent allows their child to learn to make decisions on their own. As a parallel, if a parent makes every decision for a child, the child grows up lacking independence, opportunity and growth. If, however, a parent gives a child the ability to learn from their own decisions, the child grows in knowledge, independence and freedom. Similarly, we grow because our Father in Heaven created this plan that allows us to be here on the earth.

The poet William Wordsworth wrote:

Our birth is but a sleep and a forgetting:
The Soul that rises with us, our life's Star,
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home …

When we come to this earth, we don’t remember our pre-mortal existence with God. In order that we have the opportunity to grow and learn to make decisions on our own, He asks us to live by faith, to trust Him that if we live by His teachings and according to the direction that His Spirit gives us, that in the eternities, He will bless us and we can live as families for eternity. Here are the words of a prophet from more than 500 years before Christ’s birth, speaking to this topic.

25 Adam fell that men might be; and men are, that they might have joy.
26 And the Messiah cometh in the fulness of time, that he may redeem the children of men from the fall. And because that they are redeemed from the fall they have become free forever, knowing good from evil; to act for themselves and not to be acted upon….
27 Wherefore, men are free according to the flesh; and all things are given them which are expedient unto man. And they are free to choose liberty and eternal life, through the great Mediator of all men….

As a part of our life here on earth, we will make mistakes, we will make choices contrary to God’s commandments. We know from biblical prophets that no unclean thing can enter back into God’s presence. In order that we might be clean, God sent His Son, Jesus Christ to teach us how to live, and to atone for our sins so that justice and mercy might have equal sway in our eternal judgment. God’s promise to us is that if we follow Christ’s way and live in the way that He directs us through His Light, the Holy Spirit, His teachings, and those called under His authority, that we will be clean through Christ’s atonement. At the end of our mortal lives, we can return to live with God, our Heavenly Father and continue to learn from Him and grow.

From Faith, comes action. From an early age, Susan understood this concept. She understood that if we live by faith in God, that all would be eternally well and good. As she said in her last message posted on her blog – “I have learned that a lot of things in life just don't go the way we plan. This is by no fault of our own.” As we exercise our faith in God, His perfect eternal vision and perfect care for us will deliver us home to Him.

On the earth, when God impacts our lives, whether directly or through another person, our responsibility is to act or change, to not be the same person. We are here today in remembrance of Susan’s life. Having the privilege of knowing her for all of her 25 years, I believe that one thing she would want us to do is to make changes in our lives that reflect her legacy. Let me relate an experience that illustrates that. The day before she died, I was privileged to listen to the last telephone conversation she had. She wanted to speak with a dear friend. She was weak, unable to speak above a whisper, but as this friend started to end the call, she said, “Don’t hang up, I need to tell you one more thing. Never forget who you are. Always remember the things that we talked about.”

That is our challenge – Don’t hang up on Susan. The reason you are here is because you loved her and want to remember her. Her impact on your life needs to include this knowledge. Never forget that we are indeed God’s children, that His way is the best way, and that when He acts in our lives, our responsibility is to respond in faith, love and joy to His actions. If that means change our habits, we should change our habits. If that means to go to church, we should go to church. If that means to be kinder, gentler, more loving in our family, we should do that. If that means that we stop telling God what He should do, and instead be faithful in accepting what He is teaching us, we should do that.

In time, the intensity that we feel at Susan’s passing may fade. It is natural, our lives are busy, we move on. The intensity will return when a picture jogs our memory, or when a thought comes to our mind. Perhaps tears will come at that moment. However, what should not fade from our lives is the change to our very souls that we feel at this moment. What should not change is the impact of the Holy Spirit that you feel right now, this very moment. The action that you should take is to cement the changes to your soul that God is prompting you to do right now. Because you don’t understand everything, you may hesitate. I urge you to take the action of committing to yourself to move forward in faith and diligence.

Because He has perfect, eternal vision, God will answer all of our faithful prayers, not always in the way that we wanted, but in the way that will best help us to achieve our eternal potential. All of us prayed for Susan’s health and recovery from cancer. Instead of the removal of her cancer, God answered our prayers for her with by increasing her understanding, with the giving her the ability to bear the pain, with greater strength for her to carry on and endure in faith to the end. He healed her eternal soul. As the apostle Paul said,

7 And lest I should be exalted above measure …, there was given to me a thorn in the flesh, …
8 For this thing I besought the Lord thrice, that it might depart from me.
9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

I love this verse in the book of Psalms: “Be still, and know that I am God….”

Christ said, “I am the bread of life: he that cometh to me shall never hunger; and he that believeth on me shall never thirst”… and He also said through the prophet Isaiah,

18 ¶ And therefore will the Lord wait, that he may be gracious unto you, and therefore will he be exalted, that he may have mercy upon you: for the Lord is a God of judgment: blessed are all they that wait for him.
19 … weep no more: he will be very gracious unto thee at the voice of thy cry; when he shall hear it, he will answer thee.
20 And though the Lord give you the bread of adversity, and the water of affliction, … thine eyes shall see thy teachers:
21 And thine ears shall hear a word behind thee, saying, This is the way, walk ye in it, when ye turn to the right hand, and when ye turn to the left.

Susan and all of us hoped and prayed for her freedom from cancer. Through the grace of God, Susan found freedom and teaching above the everyday, above the mundane, leading to eternity. Our task is to do likewise, with whatever opportunity God places in our path, to follow the promptings that He sends to us, to learn for ourselves, and experience that joy described so often by those of faith in Christ.

Listen to the words of faith, diligence and action from Jeffrey R. Holland

“…the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.

If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens—even if some days it doesn’t seem so. Jesus said, ‘I am come that they might have life, and that they might have it more abundantly.’ Enjoy those blessings right now. They are yours and always will be.”

I testify that God, our Heavenly Father, lives. I know that He sent His Son to teach us God’s way, to atone for our sins, and to enable our own resurrection, just as He was resurrected. Of the truth of these things, I testify, in the name of Jesus Christ, Amen.

Thursday, December 11, 2008

Tribute to Susan

Friends,

Thank you so much for the prayers and kind words you have offered during Susan's illness and the past week in particular. It is awesome to see how many people love her.

Yesterday's funeral service was a beautiful experience, we are grateful to the many people who took time out of their day and those who traveled great distances to be there to honor Susan's life. We are equally grateful to the many friends who, though unable to attend in person, sent their prayers and expressions of love and support from afar.

A good friend of our family has offered to collect stories about Susan's life and how her courageous fight against cancer has blessed the lives of others. These stories bring great comfort to us all and we want to be sure that they are recorded. If you feel inspired to write down your thoughts and feelings, please send them to tributetosusan@gmail.com by 12:00 PM on Monday, December 15th so that they can be compiled into a book and printed in time for Christmas.

Many thanks,

Zach

Wednesday, December 10, 2008

Susan's Obituary

The following was published today, 12/10/2008, in both The Arizona Republic and the East Valley Tribune:

Susan Marie Mortensen Turley, 25, of Mesa passed away on December 5, 2008 after a courageous battle with cancer. Susan was born in Salt Lake City, Utah and grew up in Tempe, Arizona where she graduated from Corona del Sol High School. She participated in the Tempe Sister Cities exchange program and spent a summer in Skopje, Macedonia. She was an accomplished athlete who won honors competing in cross country and track, and was recognized as the school's student athlete of the year in 2001. She continued her academic and athletic career at the University of Arizona, where she competed in cross country and track while earning her Bachelor's degree in Family Studies and Human Development. She pursued a career in marketing at MediServe. Throughout her life, Susan actively sought opportunities for service, whether to those she knew closely or others she did not know. She was a champion of inclusion and reaching out to make others feel blessed and loved. She loved meeting new friends, and those who were close to her were continually amazed at the number of friends she had in numerous cities where she travelled. Susan touched the life of each person she met at home and around the world. She possessed a cheerful spirit and contagious smile, even in the midst of her recent illness. We will always remember her example and the impact of her kindness on our lives. She is survived by her husband Justin Turley, parents Bruce and Janet Mortensen, brothers Zach, Sam, Mike, and David, Norwegian brother Fredrik Oygard, Macedonian sister Biljana Tashevska, and grandparents Gale Mortensen, James Rein, and Norma Jean Rein. She was preceded in death by her sister Elizabeth J. Mortensen and her grandmother Nellie Bushman Mortensen. Services remembering her life and her faith will be held on Wednesday, December 10th at 11:00 AM at the Church of Jesus Christ of Latter-day Saints Tempe South Stake Center located at 1111 E. Knox Rd, Tempe, AZ. There will be a viewing at the same location on Tuesday evening from 6:00 to 8:00 PM, and again on Wednesday at 9:30 AM. In lieu of flowers, Susan asked that donations be directed to a foundation to be established in her name to assist cancer patients who cannot afford the treatment she was blessed to receive. Donations can be made at any Wells Fargo branch to account number 2017305018.

Monday, December 8, 2008

UofA Tribute, Services, Facebook Group

We appreciate the thoughtful friends who attended Saturday's UofA-ASU game and sent pictures of the scoreboard tribute to Susan.



We are sure she was happy that her picture appeared on the scoreboard in the midst of a win by her team, and even a family of die-hard Sun Devils was happy to concede the game in Susan's memory!

A quick note about Susan's funeral services on Tuesday and Wednesday: All of the services are open to everyone. Please spread the word to Susan's friends.

Finally, we have created a Facebook group to facilitate the sharing of stories and photos of Susan for her Memories Book. Please join and invite your Facebook friends to do the same.

Saturday, December 6, 2008

Services for Susan, Memories Book

Services for Susan will be held on Wednesday, December 10th at 11:00 AM at the Church of Jesus Christ of Latter-day Saints Tempe South Stake Center located at 1111 E. Knox Rd, Tempe, AZ. There will be a viewing on Tuesday evening from 6:00 to 8:00 PM at the same location, and a second viewing on Wednesday at 9:30 AM. Please spread the word.

In lieu of flowers, Susan asked that donations be directed to a foundation we are establishing in her name that will assist cancer patients who cannot afford the kind of treatment she was blessed to receive. Donations can be made at any Wells Fargo branch to account number 2017305018.

Finally, a good friend has offered to collect memories, stories, and photos to create a memories book for Susan's family. If you would like to contribute, please send your memories and photos to tributetosusan@gmail.com and invite other friends to do the same.

Friday, December 5, 2008

"I have fought a good fight, I have finished my course, I have kept the faith."

Susan passed away tonight at 7:41 PM in her home in Mesa, AZ. Justin was at her side, and they were surrounded by their parents and siblings. Susan was resting peacefully when she left this world, despite suffering tremendous pain and discomfort during the past few days. It was a privilege to see the love that Justin and Susan showed each other even in the midst of such difficult circumstances.

We are overwhelmed by the outpouring of love and kind words on behalf of Susan, Justin, and our families. We feel blessed to know that our friends stand by us in this time of sorrow.

And yet, we rejoice in the precious years that we were able to spend with Susan. We know that her influence for good will live on in the lives of her many friends and family members. We give thanks for the knowledge that we will one day be together again, and that she is now able to rest from her pain and the cares of this world.

God be with you 'til we meet again. We love you, Suz.

Remarks From Susan

Susan wanted to update the blog and she asked that I (Justin) be her scribe.

There is so much that I want to say that I have been unable to express. I appreciate Justin and Zach for updating the blog for me.

I have learned that a lot of things in life just don't go the way we plan. This is by no fault of our own.

Quickly I'd like to express my gratitude to all my friends and family for all your love and support, and get out all my love for you.

To all my nieces and nephews, both here and to come, please know that it is important to build a Christ centered life.

To my cousins, you've been some of my greatest support, and I love you.

To all my friends over the years, you've kept me on the right path by doing what's right. And we sure have shared some great memories.

To my aunts, uncles, and grandparents, thank you for your examples and unconditional love.

And to my awesome husband Justin, thank you for loving me with all your heart and for caring for me with selfless kindness. I love you forever.

I know that God lives and that He loves us. I know that Jesus Christ died for our sins so that we might return to our Heavenly Father as we follow Him. It is through service to our fellow men that we show our love for our Savior.

Thursday, December 4, 2008

U of A Tribute to Susan

In thinking of ways to honor Susan and the wonderful life she lived, an idea was brought up to pay tribute to her at the upcoming ASU vs. U of A football game this Saturday in Tucson. Susan, as many of you know, competed for the University of Arizona as a member of both the cross country and track and field teams. She was also very involved in the student-athlete advisory board and also volunteered a significant amount of time working in the C.A.T.S. Community Service program. In these roles she had the opportunity to get to know and work with many Wildcat athletes, staff, trainers, and members of the athletic department administration. The idea of honoring Susan at the game was floated by a few people at the University (they know who they are, and to them we will be eternally grateful), and they took the idea and ran with it. They went above and beyond what any of us could ever expect and developed a picture tribute to Susan that will be shown on the big screen at the stadium between the 3rd and 4th quarters (you can see the picture below). The timeline on which this happened was incredibly short, and they dropped everything to get it done in time. Their willingness to do this is just another example of the number of lives that Susan managed to touch during her abbreviated stay on this earth. So if you happen to be at the game on Saturday, keep your eyes on the board and get your cameras ready! And for all of us current and former Wildcats out there, BEAR DOWN!!!

Tuesday, December 2, 2008

At Home

I spoke with Justin this morning, and he asked me to post an update.

Bruce and Justin met with Susan's oncologist yesterday morning. His opinion was that her body would not be able to endure further chemotherapy, it would do more harm than good. Together they decided that the best course of action would be to take her home where she can rest more comfortably.

Susan has been sleeping most of the time lately, but Bruce mentioned that she overheard this conversation and asked "Does this mean I'm done?" They indicated to her that her treatment was complete, and she closed her eyes and smiled. She understands her situation and is at peace.

She arrived home yesterday afternoon and is receiving hospice care. Her caregivers are adjusting her pain medication to help her have more awake time, which is important to her. Justin, Bruce, and Janet are caring for her together with her nurses.

We appreciate the many prayers and kind words that have been offered on behalf of Susan and our family. We will continue to keep our friends and family members updated through the blog.

Zach

Saturday, November 29, 2008

Update

The day after arriving in the hospital after receiving the IV nutrition, she seemed to improve pretty fast, feeling better and just all around more normal. She had the catheter installed in her abdomen to drain the fluid. We haven't been able to remove much fluid yet, though. Since that procedure she has not really fully woken up and is not mentally all there. That was done Wednesday. We have also learned that because of the long break from chemo the cancer has gotten worse and has spread more in the lungs and to the adrenal glands. It's hard to say for sure, but her decrease in cognitive function is probably related to the build up of all the pain meds she's on, her electrolyte imbalance, her sick liver, adrenal gland and kidneys. She's also much weaker despite the IV nutrients.
We are having a family fast on Sunday and we invite all of you to join us.

I forgot to mention that her Oncologist decided he didn't think it was a good idea to delay any longer the chemo treatments, but also didn't want to give the full dose yet. So last night she started with only the drug Erbitux, which is an antibody that is supposed to target cancer cells and slow their growth. Other then extreme fatigue, she ha had no other side effects yet.

Tuesday, November 25, 2008

Back in the Hospital

I guess I have to start doing updates again; Susan's back in the hospital. We had a disappointing weekend. After having the fluid drained on Friday, we had big hopes that having done that she would have relief and be able to eat and catch up on the needed nutrients and calories she was missing because she couldn't eat due to the distention. Turns out that the fluid just came right back in less then a day causing discomfort all over again. Real frustrating for Susan. The procedure is painful and she was hoping to get relief and a new start but didn't get any. She wasn't able to eat much all weekend despite our best coaching efforts. By Sunday she was noticeably weaker, so we decided the best thing would be to get her back on TPN (IV nutrients) on Monday. It was a good thing we did. After doing more blood work, we also found out that her electrolyte balance was off (sodium low, potassium high), which is very dangerous if not dealt with carefully, and her white blood cell count was quite high (sign of infection), and she was dehydrated, and malnourished. This time we're not at the Mayo we are at Banner Dessert where her Oncologist is. The Doctors here have been really good at looking at the whole picture and they helped us understand better what is happening. A lot of things that are going on with Susan are having an additive result and negatively effecting her. We learned that the reason the fluids built up so fast was that she was already malnourished and lacking calories and protein along with a sick liver. Protein in the blood helps the water stay in the veins. Since there was no protein, the fluid built up in the abdomen. Then, because the fluid built up again she wasn't able to eat, causing more malnutrition, dehydration and weakness. To help stop the fluid from building up in her abdomen she has been on two diuretic drugs for the last 3 or more weeks. Sometimes diuretics may cause the kidneys to excrete more sodium than water, resulting in low sodium. This in one reason she felt so week and confused. One of the diuretic drugs she was on also had the effect of reducing the amount of potassium excreted by the kidneys, resulting in high potassium, a dangerous situation. The fact that we were feeding a diet high in potassium probably didn't help either. I'm sure this is a very simplified explanation of a complex problem, but it's beginning to make more sense why progress is so slow. After being on the TPN for only 24 hours you can tell a big difference in her. She's actually making some jokes and her little attitude is starting to show through. We heard that if she's here over Thanksgiving they can give here liquid turkey and mashed potatoes in her IV. She's real excited.

Friday, November 21, 2008

A week and a half later

Well, it's me again, Justin. I thought my blog updating duties came to an end when Susan came home, but she still doesn't feel well enough to sit in front of a computer. She spends most of her time sitting in the lazy boy chair sleeping and sipping on high calorie concoctions, and nibbling on other high calorie dense foods. I wish I could say her healing situation has improved by leaps and bounds since a week and a half ago, but it seems to be moving at a snails pace for Susan. More like a really slow roller coaster, with all the ups and downs. She had been eating well, for most of a week, but the fluid continued to build up around the bowels which is painful and made it hard to eat because there was no room for anything else, which also makes the #1 and #2 functions more difficult. She hasn't said anything about how much detail I include in the posts, but I wonder how she really feels about me painting this mental picture for you about her bodily functions? Who knows how I would feel if I were in her shoes, but I think it's a good thing for everyone to know what to pray for. By the way thanks for all your prayers. I know there are many!! By the looks of the map to the right they come from all over. I got off topic. Because the fluid in the peritoneal sac, she was unable to eat or get comfortable, so today we went to the hospital to get it drained again. The last time was about two weeks ago and they removed 2.5 liters, this time they only got out 1.5 liters.... "only". Doing this brings immediate pressure relief, but it also brings a different pain soon after as the bowels readjust, which has been almost unbearable today. :( Hopefully tomorrow will be better.

I also need to make mention of the Undy 5000 which was a huge success for the cause and for our Team! Thanks so much to everyone who came out and supported us. It was awesome to see so many there sporting the "Super Susan Semi Colon Friends" shirt. The picture of Susan flying in her cape and underwear was not a photoshopped picture, except for the flying through the sky part (she can't really fly). In college her and her friends actually dressed up like that, undies and all, and took pictures while they jumped superman style onto a bed. That's what track girls do on weekends in college I guess. How fitting of a picture though, she must have had a premonition.



Talking about praying above and the Undy 5000 reminds me of someone who stopped me as I was walking (woddeling) back to my truck after the race. As I was about to leave I was stopped by a lady who introduced herself to me as Robyn. She said she knew a common friend of Susan's (Natalie) and, also, knew a common friend that we met at the Mayo hospital (Kim Miller, cool story that I need to wright about and soon will, I thought I'd leave that for Susan, but it looks like I may be doing it). Robyn's family and friends were wearing the Polyp Patrol shirts.... Almost as creative as ours :) JK. We spoke for a minute, during which she let me know that she and her family and friends had been praying for Susan, even though they hadn't even met her. They had heard about her and her condition from Natalie, who also knows Kim, who has almost the exact diagnosis as Susan's. Sorry if that's confusing, but it was really nice to hear that so many people are praying for you Susan, even people we don't know.

Wednesday, November 12, 2008

Last Update...... She Escaped!!

We were finally able to sneak her out today. It's really nice to have her home. I was really starting to dislike the smell of that place, but that's not the main reason I'm happy.

Yesterday they took her off her IV meds, and liquids, and disconnected her from all the tubes, and wires, etc. Now she's taking oral medication for the pain management. They gave her a new drug along with the ones she's been on for the last 3 weeks.... actually 4 months. This new drug makes her real sleepy so now she sleeps even more. Having a conversation with her is fun. She'll be awake talking, then you ask her a question and wait for a response and.... nothing, she fell asleep.

I know many of you would love to see her, but she's still not feeling 100%. She asked me to let everyone know to hold off on any visits for now. Hopefully she will be able to make it to the Undy 5000. Here is a pic of her last meal at the hospital. (If you look behind her you can see the white board with all the times, it had been cleaned up and organized after the first erasure).


Speaking of the Undy 5000, we hope to see many of you there Saturday morning. I can't remember if this had been mentioned, but T-shirts were donated for Susan's cause for us to wear at the "brief" run. We are planning on handing out the t-shirts at the race somewhere around the registration table, so keep a look out for us.

Thanx for following the updates from the iPhone (most of them anyway).

Justin signing out.

Monday, November 10, 2008

Update #too many

Hopefully the updates will be ending soon, so I decided to stop counting. There were way more then I first thought there'd be when I was first pressured.... I mean agreed to do this :) Susan won't be coming home today as we hoped, but now the doctors feel like Wednesday will be the day! Her pain is being managed much better now. They've changed her drug dosage and timing, and even added a new one so that now she feels better, and is also sleeping better (with out so many of the hallucinatory dreams). She hasn't tried to escape again, thankfully.
It's almost been 3 weeks now and Susan has gotten to know a lot of nurses, some have been good and some have been not so good. Last night she had a nurse that happened to be added to her "poop list". After being here so long without the ability to do much she has had to find ways of occupying her mind. One of those ways was keeping track on the white board of all the times for her events: walks, bowel movements, pees, "fluffs", and various other things. It didn't always makes sense to the rest of us, but it made sense to Susan. Last night she got a new nurse that she hadn't had yet. She walks in a the beginning of the shift change and looks at the board and asks "what's this mess, can I erase it?", the other nurse just told her to leave it, and we told her what it was. This morning while Mike and Susan were out for her morning walk, the nurse went into the room and erased all of the times on the board. Needless to say Susan was irritated and now doesn't like that nurse. Jerk.

Sunday, November 9, 2008

Update #16, No More Holes Please

Susan has been suffering from a distended belly which is called ascites. Ascites is where fluid builds up in the membrane sac (the peritoneum) that holds all the guts in place. They were hoping that by giving here drugs to reduce water retention her body would get rid of it on it's own. It was getting so uncomfertable they decided to do a procedure called paracentesis where they insert a tube into the peritoneum, with a puncture through the belly, to drain the built up fluid. It's hard to believe, but they drained 2.5 liters from her little belly! (10 lbs worth) As it drained she immediately felt relief followed by extreme cramping as the bowels readjusted. Since then she's been able to take deeper breaths and she started feeling hungry again. She's slowly trying to make her way up to 1500 calories a day.

Friday, November 7, 2008

Update #15

Not a lot has changed, at least not as fast as Susan and all of us hoped. The swelling has gone down, but there is still a lot of fluid build up in the abdomen area. The pain and discomfort seem like they will never go away. She got her staples out from the second surgery this morning. The NG tube finally came out yesterday also. She's now eating clear liquids and small amounts of soft foods. Hopefully, if all goes well, the surgeons want to kick her out of here on Monday. They said she has over stayed her welcome. Let's hope for Monday.

P.S. She farted yesterday!!

Monday, November 3, 2008

Update #14

Sorry about slackin on the updates, I have two other jobs besides this one.
It's been a rough road and it's almost impossible for Susan to not get discouraged, she does a pretty good job though at putting up the facade. Like others have mentioned in their comments, we also didn't think this would be such a long drawn out event, and this is what's causing the downers for Susan (and all of us). She's still having a lot of pain and distention in her belly, and swelling in her lower back, which is very annoying because she has to lay all day on it. This also makes it impossible to get a complete nights sleep. The doctors seem to think that all of this is normal though and will continue to slowly recover. They've done blood and urine lab work and another CT scan and everything is looking good.
Also, to let you know, Susan is proudly wearing her "I Voted Early" sticker on her gown tonight. Boy is she patriotic.

I was asked to re-post the link to the Undy 5000 run November 15th, so here it is:
Susan's Undy 5000 Team

Saturday, November 1, 2008

Update #13, She Pooed!!!


Thanks to Anna Mortensen for the awesome T-shirt. As you can see by the NG tube she's still not eating, at least not through her mouth. Her bowels are working none the less, as we found out today! It has been a discouraging roller coaster for Susan, but this is another step closed to the finish line and she feels quite "relieved" for having reached this new milestone.

Friday, October 31, 2008

Update #12

If I could just wake Susan up maybe we could go walk around the floor, knock on other patients doors and trick-or-treat. But I can't wake her up. She was given Ativan last night to put her to sleep and it seems to be still working. All day she's been so tired, she struggels to even keep her eyes open..... Quite funny to watch actually. Her brother Mike stayed with her last night and he said the sleeping drugs that she was given had some weird side effects. She was having a lot of vivid dreams and a couple of times Mike found her at the edge of the bed (I think even out of her bed once) trying to escape, confused and unaware of where she was. As funny as that seems, it could have been dangerous and she could have hurt herself. It was probably a good thing Dr. Mike was with her last night because he's more familiar with the drugs and their side affect and how to deal with crazy patients.
Between naps today she also went on a few walks and was even able to get back into bed all by herself!

Wednesday, October 29, 2008

Update #11, Round 2

Sorry for keeping everyone in suspense, I know there are many of you. I haven't been able to update lately. Susan had a good day today. Yesterday she got a PICC Line put in (a catheter from her inner arm to her heart). I swear can she have enough holes and tubes put in her, I now affectionately call her my little holey semicolon :) They are using the PICC to inject nutrients directly into her, such as proteins, lipids, and vitamins. She's been able to get up and walk 3 times today. It's a little more of an event now, she has more tubes hanging off her this time. The surgeon gave us an explanation of why they think she had the internal bleeding. After the first surgery the doc saw no bleeding and her blood tests showed no indication of not being able to coagulate so they closed her up without concern. After, they were giving her Heprin shots to help stop any blood clots that might form from sitting so much, but this caused a problem in her colon were the defect was and it couldn't stop bleeding.

Tuesday, October 28, 2008

Update #10, Back to Surgery

Before now I never thought I would be a blogger, and now here I am blogging at 2am.
Yesterday morning they decided to give her a blood transfusion because her hemoglobin levels were low. Seemed to respond really well to that, her heart rate went down and she slept better then she had in a while. That didn't last too long. Around noon the pain and swelling got worse and her heart rate went back up. I realized there was reason to be concerned when around 9pm her room was full of people wearing suits talking about what we needed to do next. There was concern that a hematoma (blood clot) was causing strain on the anastomosis (connection), and if that was the case it could result in junk leaking out and a really bad situation. They decided to be proactive and go back in and fix it up. The plan was to disconnect the large and small intestine and do a ileostomy (colostomy bag) allowing her to eat and get more nutrients and heal faster, then later go back and reconnect the bowels. Surgery started at around 11:30pm. The surgeon came in at 1:30am to tell us the results. He said all he found was that the connection from the last surgery had a small defect that was only detectable when he squeezed it. It hadn't leaked yet but when squeezed stuff was able to come out. After removing the hematoma and seeing what he had to work with, he felt good about not doing the ileostomy. He said the large and small intestine were still in good condition, so he decided to just stitch it up the old fashion way. They normally use a contraption that staples it all together. Hopefully now she will be in less pain and will be able to heal normally.... Hurray for no colostomy bag! We should be able to go see her soon. So much for the laproscopy though.... they had to open her up for this one.

Sunday, October 26, 2008

NG Tube



Update #9

Last night was no fun for any of us. Since Susan's bowls are not working and moving stuff through (the doctors say they are asleep) she's getting backed up and it's causing a lot of pressure. Even without eating the liver, stomach, and gallbladder can produce a liter of liquid a day. And since her bowls are sleeping they had no where to go. It got a little too much to bear so they had to put a NG tube down her nose to drain all the gastric soup. Now that the pressure is down she feels a lot better.

Saturday, October 25, 2008

Update #8, Slow Progress

Susan is progressing slowly, although the doctors say she's right on schedule. She started seeing swelling in here lower left abdomen last night and it has slowly gotten worse to the point of causing pain. The docs were concerned so they ordered a CT scan. They saw some bleeding in the anastomosis where the small and large intestines were reconnected. Which is most likely causing the inflamation. So she won't be doing her routine jog arround the building, she's supposed to take it easy today.
She just continues resting, we didn't get much sleep last night.
Still no farts. Pray for flatulance!

Friday, October 24, 2008

Update #7, Running Laps


I had a hard time keeping up, I had to hold on to her gown to slow her down!

Update #6, She walks!!

I was unable to stay at the hospital last night. She was not alone though. Thank you Janet for staying with her. I talked to Susan this morning, and everything seems to be going well. Today was the day they were going to have her get up and try to walk. She got to walk earlier than expected though this morning around 4am, not because it was the right time, but because they were trying to keep her awake and breathing :( Susan took a little too much pain killer last night. It caused her to relax a little too much which slowed her breathing in her sleep to about 10 breaths a minute. Not so good, so they needed to keep her awake. Susan asked if she could try to walk, she did a few laps around the floor. She was walking slowly then she pushed her mom and nurse away and started running to the elevator trying to escape. Part of that story may not have really happened, I had a hard time understanding her on the phone early this morning. One of us must have been on something.

Thursday, October 23, 2008

Update #5, Recovering Susan


Here's Susan after surgery trying to stay awake.

Update #4

Rendezvous! We had to wait a while to get Susan her own room. My parents, her parents and I passed the time playing too much sudoku and iPhone games. We just came up and have been chatting with a half drunk-like Susan :) She's very pleasant and smiley, stark contrast to this morning when she had lots of pain and no drugs. Now she has very little pain and lots of drugs. She's going to keep resting now, she's having a hard time keeping her eyes open. We saw the scars. It's pretty amazing, she has four little band aids covering all the tiny incisions.

Update #3

We just spoke to the Doctor. She told us everything went well with no suprises, and she was able to do it laprascopically. Susan is now in the recovery room doing none other than recovering. They will let us see her as soon as she wakes up and is transfered to her room.
Now we're just impatiently waiting for a few more hours.

Update #2

Susan's been in a lot of pain lately, but you wouldn't know it because she doesn't like to show it. She wasn't able to sleep at all last night. She was nervous for surgery, but this morning she was just looking forward to being put to sleep for the next few hours. She was just taken back to go take her "nap" (surgery) a minute ago.

Surgery updates from the iPhone: Update #1

I was told to keep the blog up to date while Susan was unable to. We are here bright and early at the Scottsdale Mayo. We had to be here at 5:30 this morning. Susan is back getting prepped and we are just waiting till they let us see her before surgery. Sitting here this early I figured I could try and rest in these uncomfortable chairs or I could play with my new birthday present. I don't know if this blogging from the iPhone is going to work tho, my thumbs are already getting sore.

Friday, October 17, 2008

Surgery then Chemo

I spoke with another Surgeon at Mayo who is either a resident, or working with my Surgeon...I haven't quite figured it out. Anyway, he was in the consultation appointment when I met her and since she was out of the office until Thursday, he had been trying to help me...offered to call my Oncologist to work something out etc. He was pretty animate that Dr. Young-Fadok would not go forward with the surgery only two weeks off of chemo.

So I waited while they fought over me :) One potential solution that we had come up with was to see if they would move the surgery forward if they really weren't going to budge on two weeks...I wasn't getting my hopes up that she would have an opening in her schedule with such short notice. She did have an opening, so this is what they ended up compromising on. My surgery is set (hopefully for good this time!) for next Thursday, October 23rd. Just about 3 weeks out of my last Chemo. I'll go in on Monday for all the pre-op tests.

She'll be starting off laprascopic, and if needed it will move to traditional. We ultimately decided on going this route for the quicker recovery time, and that means I can start chemo up slightly faster if all goes well. About a foot of colon will be removed and they will just reattach to my small intestines. The average length of stay for a colon resection is about 5 days. The only real requirement to be discharged, if I understand it correctly, is breaking wind/having a bowel movement. That means any visitors should be aware in advance that I'm not holding anything in :) So really, what else is new the last three months?!

In other good news, my secondary insurance, who Mayo is a contracted provider with, will be covering more than I originally thought, so our out of pocket is going to be minimal. Hooray! Everything has just been falling into place so nicely, so it makes us think we've made the best decision to have it there. My good friend Rachel, who is a nurse at Mayo, wrote and told me that she usually gets colon resection patients on her floor post Op...I'm keeping my fingers crossed, I think that would be pretty cool :)

Its been a while since I posted a picture. Here is Justin, my juicer.



I have a lot of faith in the good nutritionists of the world, but I will admit I have not followed their advice for me very closely. Back in MN, they advised me to eat as high of fat diet so that I could to put the weight back on I had lost. I've never eatten like that and quite frankly it made me sick drinking, yes drinking, cream. I tried to add a few new higher calorie things to my diet (more ice cream!), but I think continuing our pre-cancer diet has helped me out tremendously. We're by no means perfect, we still eat out occasionally, and 100% of our food is not organic, but we really try to eat a minimal amount of meat and sugar, and lots of veggies etc etc. I've gained back about 1/2 of the weight I lost in the beginning...so I still have a little ways to go, but I feel so much better when I eat this way.

I have to send out a huge thank you to all the people who have joined the team my dad set up for the UNDY 5000, and to those of you who have donated so generously to the cause. So far as I can tell, the team is one of the top 3 fundraisers! You're amazing!! I'm glad that my surgery has been moved up so I'll have a little more time to recover before the event. I'm so excited!!

Hope you all have a great weekend. Thanks for your prayers and support!!

Wednesday, October 15, 2008

Round 7...or Round 1?

I was holding off posting in the hopes that I'd have a surgeon/method picked by now...but alas I do not. I'd say that I'm 90% sure of who I'm going with, but we're still working out some final insurance kinks. That being said you can probably surmise that Mayo Scottsdale has won my vote in the 2008 Colon Surgeon Election! I'll be just as happy if for some reason I'm going to have to go with a traditional surgery and the other surgeon, I really liked her as well, and it's been a tough decision.

Along that vein...and I'm sure everyone is sick of hearing about our broken Healthcare system, and the need for Healthcare reform with all the election coverage...but if you've never understood what all the hype is about, or you've never been un-insured, or had a major illness you may find yourself rolling your eyes anytime the word comes up. I'm not going to get political here, but I can give you a perspective about how outrageous the costs are. We're learning quickly about the "Cost of Cancer". Each of my chemo treatments costs upwards of $10,000! Add onto that all the Dr.'s appointments, Surgery, Hospital Visits...its adding up quickly. I am SO thankful/blessed that I have good health insurance that is covering nearly all of my costs. You can do the math and see how stressful it must be for someone without health insurance to have a major medical crisis...expenses like this would bankrupt even the most frugal of us. What I think is worse is the possibility people aren't getting the best care available to them because of this. Everyone deserves that. I could go on...

The Mayo surgeon's request was that I be off chemo for 4 weeks prior to my surgery, so that pushed the date out a bit to the week of the 27th (as of right now, tentatively scheduled for Halloween! How exciting, my very own holiday!). I called to run this by Dr. B last week and I got the sense that he was not thrilled about that, but willing to go along with her request, so I cancelled chemo for Tuesday, but still kept my usual blood work and follow up appointment with him. Oh the plans I was making in my head having a break from chemo! I admit, I didn't really have 'plans'...but a girl can dream. :)

Yesterday at my appointment my blood work came back showing that my liver enzymes and CEA are continuing to go up. His first comment was that it seems the combination of chemo and Avastin (the drug I had to stop for surgery) are what was giving me such positive results before. He was not at all comfortable with me being off chemo for an entire 4 weeks given these new blood numbers. We're in a bit of a rock and a hard place since he doesn't want to postpone surgery any longer and I can't go back on the Avastin pre-surgery and for some time after while I'm healing. He had mentioned in a previous appointment that there were other antibody drugs we could try that don't have that same risk of bleeding as Avastin. Enter new drug, Erbitux.

Erbitux's special power is targeting a protein called the epidermal growth factor receptor (EGFR) that is found in cancer, and interfering with cell growth. There was a special test called KRAS that Dr. B did on my tumor biopsy to be sure this EGFR was present, it is, so I'm a good candidate to give it a try. It's a fairly new drug that up until a couple years ago has been in clinical trials.

Then came the news that I have told myself there is always a chance of hearing, that was that I needed to switch chemo drugs, as Erbitux was found to work better in combination with something other than what I am currently on (FOLFOX). I asked him which drug, and he said FOLFIRI. I've read about FOLFIRI, and was secretly hoping that I wouldn't ever have to 'upgrade' to it...oh well! He went over the most common side effects of the new drugs: Skin rash, diarrhea and hair loss. Up to this point I had been okay with the prospect of loosing my hair...maybe because it was not a common side effect of my first drug. When those words came out of his mouth, I was surprised that I had to try really hard to hold back the tears. What's the big deal after all? It's just hair, I know it will grow back. Whats more, that's probably the easiest of those three side effects! Well I held it together until I left the Dr.'s office, and as soon as I walked out the water works started. As I walked to the car with my dad we passed an older woman who I could tell was bald under a hat she was wearing. I made brief eye contact with her, and that 'cancer connection' said a thousand words, that I would never be able to express on my own. I looked down, slightly ashamed, and she stopped and put her hand on my shoulder and just said, "It's okay hun, I had a bad day yesterday too. You'll be alright, I love you." I smiled and thanked her and thought about how amazing the connection one cancer patient feels to a fellow cancer patient is. I really don't think I could even start to explain it...I guess it's just complete empathy.

So I've had some time to ponder on why I had the reaction I did. Number one, I wasn't really prepared for it. I thought my treatments were going well, and that the tumors were continuing to shrink etc.(they still are so far as we can tell) so it caught me a bit off guard. Number two, I think I have been lucky enough to hide behind my hair up to this point. I can go out in public, and it's like I have this 'secret' that unless someone knows me, would never guess. Now its going to be harder to escape the fact that I'm dealing with this. I had my cry, and I'm over it...I'M GOING BALD! :) :) :)

A funny little story...after my doctor told me that I'd most likely be loosing my hair he quickly said, "I'll write you a prescription for a wig". I thought it was some kind of lame joke. He wrote out a few prescriptions for the rash etc. and after the appointment my mom went to pick them up for me from the pharmacy. When she did the pharmacist said there was one that she couldn't quite make out, and asked my mom if she knew what it was supposed to be...the only words they could make out were "scalp". Well, it turns out it really was a prescription for a wig! Hahaha. They don't fill that at CVS :) I guess insurance will cover a portion of it...who knew? If only I could get them to cover all of my surgery!! :)

So wrapping this all up, I haven't actually started the round yet. Dr. B wanted me to confirm that my surgeon would still go forward if he started me on this new cocktail. I haven't heard back from her yet, but hopefully I'll start it either Wednesday or Thursday with her blessing. After surgery I may go back to my old regiment, but we'll cross the bridge when we get there. Until then, I'm going to brush my hair :)

UNDY 5000 Update!!
My dad created a team for the event called "Susan's Friends" so if you're participating, put yourself on the team! Here's the link. See you November 15th!

Saturday, October 11, 2008

Colon Cancer Event

I've been meaning to post information about this event for some time, and realized it's not too far away so I had better get on the ball!

The Colon Caner Alliance is sponsoring a 5K and 1 mile fun run in 3 US cities, and one of them happens to be right here in Tempe at Kiwanis park on November 15th! My cousin, Anna, is running in the same race on November 1st in Dallas, TX...I had to give a shout out to her, and running buddy Stacey who is recruiting people to run here! :)

I have every intention of attending, even though I won't be running. It has kind of a fun spin, that I hope turns out okay! They encourage runners to run in their (appropriate) underwear, and instead of getting the typical race t-shirt, participants get a pair of boxers. The goal is to "do something outrageous to raise awareness about colon cancer". Kiwanis isn't the most public of places to make a scene, but all the Saturday morning park goers are in for a real...uh...treat? :) Of course you can run/walk in your normal work out clothes too.

If you're interested in running/walking you can click here for more information and registration. And be sure to let me know if you are, so I can cheer you on from the sidelines!! :)

Wednesday, October 1, 2008

1/2 Way Through My Chemo Mile

Can you believe that yesterday I started my sixth chemo treatment? I hardly can! At times 'the finish' seems so far away, but for the most part the time between treatments really seems to fly by...its really turning out to be just like running a mile race, and I know I'll be done with 12 before I know it! Round five may have proved to be my most challenging yet.

I hope this counts as 'pictures' this post...I haven't taken any of my outsides for awhile. Here is the CT Scan from back at the end of August. I tried to choose a slice of myself that compares apples to apples of the first scan picture I posted a few weeks ago. Just to save you the hassle of scrolling, I'll re-post it.


1st Scan 7/08


Latest Scan 8/23/08

My mom was over at my house when we took a look at the entire scan...and it was pretty exciting to see tangible evidence that the chemo is working and doing its job. We both got a little emotional scrolling through my insides. I chose this particular one to compare because there are three pretty big tumors in the first scan, that you can see are noticeably smaller in the second. I still have quite a ways to go to get rid of all the additional ones not visible here, but I'm very encouraged seeing it for myself...I've said it before and I won't stop saying it, I know your prayers are helping.

I mentioned above that round 5 has been a bit of a challenge. I have felt the side effects more this round than the others, and the pain that I had all but forgotten that really led to the diagnosis was back this round. If you remember back from my ER visit while in Mayo during my first round, the doctors said that the pain could be a sign the chemo was working on my liver...so it's hard not to think that my pain returning could be a good thing... its what I try to tell myself :)

My mom went with me to my pre-chemo doctor appointment yesterday. We're getting to practice a little bit of extra faith after hearing the counts from my blood work. I've been mentally preparing myself, just like my doctor warned, that there may come a day when my counts go back up...my goal to stay positive and not to get discouraged. Yesterday was the day (probably not the last), and its been a challenge! The hardest part about seeing 'those numbers' go up from the previous blood work is wondering what the reason may be...is it because something is wrong, is it a coincidence, is it because I had to take a few pain pills to get me through, I ate beef the day before the blood test (first time since July!), have I been slacking in my diet too much, is my faith waning, is it because I went off the Avastin? A person really could drive themself crazy trying to figure it out. So I've tried to put it out of my mind.

Dr. Bachrach was slightly concerned, and said its even more urgent to have the surgery as soon as possible, so that I can start back up on the Avastin as soon as possible. My dad did me a huge favor and called the oncologist I saw at Mayo, MN who agreed with Dr. Bachrach's course of action, to have the tumor out ASAP and start back up on Avastin. Dr. Bachrach has been keeping him in the loop as well...it really makes me feel good to see them working together, like they really care about me as a patient and have no egos to worry about.

My CEA went from 5.5 two weeks ago to somewhere in the 7s, and my liver enzymes were also up, along with a few other numbers that I can't remember. I have my final two consultations with potential surgeons next week, and after I decide who, I could be having the surgery the week of 10/13. Still haven't made up my mind on laprascopic vs. traditional...so far leaning more towards traditional to give the surgeon a chance to take a better look at my liver, and make sure he/she doesn't miss any affected lymph nodes...but I'm waiting to hear out these last two Dr.'s opinions.

I'm having another CT scan this Friday, pretty anxious to see what is or isn't brewing inside of me! :)

I've been pretty horrible at responding to emails and returning phone calls lately, so I wanted to give a big thank you and I'm sorry all wrapped into one. I'll get around to responding eventually, just wanted to let you all know they are being received, and they are very appreciated :)

Much love and thanks to all of you for your support and prayers :)

Wednesday, September 17, 2008

Cinco de Chemo

Yesterday we finally got the results of the CT Scan comparison and the report was....the lesions/tumors in the liver have decreased in both quantity and size, and the enlarged lymph nodes are also noticeably smaller!!! I don't have a copy of the most recent scan to post (nor have I seen it), but here is a picture for your viewing pleasure of the first scan I received back in July. I've debated whether to ever post this picture...reasons being its a bit depressing to see my swiss cheese liver, I still don't feel like that is inside of me, and in a way it forces me to confront how serious my diagnosis is.

If you need a little help distinguishing what is what, this is a very thin slice of my mid abdomen. The liver is the large organ on the left. A healthy liver would show up a solid grey...each of the spots on mine is a tumor or what they call lesion. The white circles towards the bottom of the image are my kidneys on either side of my spinal column. The thin white slits around the perimeter are ribs. There is a spleen and a pancreas in there as well. My epidermis and dermis are showing!!


But the news we received yesterday is very encouraging...there was always the chance that my tumors would not respond to chemo at all, and having to wait so long for the results was torture! As you can see, while this is great news, we still have many a tumor to get rid of before I am a candidate for the liver resection surgery. I have no doubt that these results are a combination of the chemo and all the prayers and faith from each of you. I don't know how to thank you enough! Our prayers are being answered.

Now that you've seen my insides, I can't help but share one more bit of good news from my appointment yesterday. In my Round 4 post I mentioned the tumor marker measured through my blood draws, CEA. Two weeks ago it was at around 8, and my blood work from Monday shows another downward trend, it's now at 5.5!

We talked more seriously about when Dr. Bachrach thinks I should have the colon resection, and his recommendation was in the next month. So, I'll be setting up some consultation appointments with different surgeons, and making that decision very soon. We have some very good recommendations of surgeons who specialize in laproscopic colon resection, so I'm anxious to see if I am a candidate for that, or if I'll be sporting a scar right down me whole middle! I referred to this as the standard 'fillet' method to my mom the other day, I don't think she liked the reference much....but its more or less what happens! I actually think it could be a pretty cool battle wound, think of the great stories I could make up to tell my kids or nieces/nephews about how it happened...a sword and box magic trick gone very bad... but then I come back to reality and the longer recovery time, and higher potential of complications quickly reminds me why its not at all worth wanting it if I'm a laproscopic candidate.

I've always loved watching the surgeries on Discovery Health, but the closer my own gets, I've found them very scary and steered clear while channel surfing. This isn't really a surprise, and I'm sure quite normal, but I thought I was being a little bit of a baby, so the other day I forced myself to watch a gastric bypass and can report I'm feeling much less anxious. People have surgery everyday, many times elective and have very few complications. The less I fear, I think the better off I am!

I guess thats all the updating I have for now! Thank you, Thank you, Thank you for your prayers!!!

Wednesday, September 10, 2008

Soapbox

The pink ribbon is synonymous with Breast Cancer... I don't know about you, but I assumed that if there was a ribbon for Colon Cancer, it would be brown, but it's not... it's royal blue. :)



Often times when people experience a particular disease, or some unfortunate event they develop a conviction or desire to reach out to others who can relate, to organize fundraisers, or spread awareness or education about the topic. Its where organizations and foundations are born like Mothers Against Drunk Driving or the Lance Armstrong Foundation.

I'll admit right now that I have that little desire to in some small way 'educate people' in the hopes that they can take preventative measures to avoid ending up in a similar situation to the one I've found myself in. So if you'll humor me for just one post on this blog, I promise it will be the only one. And it will be short and sweet!

Here are a few statistics (from a credible source, American Cancer Society)
  • Colorectal cancer is the second leading cause of cancer death in the US. Approximately 147,000 people will be diagnosed with colorectal cancer this year, and almost 57,000 will die from the disease.
  • Colorectal cancer is a highly preventable and treatable cancer when caught in the early stages. Tens of thousands of lives could be saved every year through proper screening. Almost all colorectal cancers begin as polyps in the colon that can be removed during a colonoscopy. When polyps are removed, colorectal cancer can be stopped before it even starts.
  • A personal or family history of colorectal cancer, certain other cancers, colon polyps, or other bowel diseases increase your risk of developing colorectal cancer. Anyone can help prevent colorectal cancer by exercising regularly, eating a low-fat high-fiber diet (whole grains, fruits & veggies), maintaining a healthy weight, and not smoking.

Click here for information on Colon Cancer screening recommendations from the ACS.

As I'm sure you're well aware, Colon Cancer is not the only cancer that has available screening for early detection and prevention. With that being said... allow me to nag you :)

Have you had your annual...
Mammogram?
PAP Smear?
Colonoscopy?
Prostate exam?
Blood work?


The 'standard' for starting colon screening is age 50...although there are many groups who are pushing to lower that age to 40. I know many of the people who read this blog are quite a few years away from needing to start thinking about their first colonoscopy, but we all have parents, grandparents, friends, aunts and uncles who are 'of age'. Encourage them to schedule a screening....the good news is that if it comes back in the clear and no polyps are found the general thought is that you do not need to be screened again for another 10 years!! That is some good piece of mind!

No one likes to be preached to, and I hope you know that is not my intent with this post. I just feel like my eyes have been opened and I have a whole new perspective on becoming an advocate for one's own health. There wasn't much I could have done by way of screening to help my own situation, but there are tests available to us that could catch something early (God forbid) for you or one of your loved ones.

Happy screening :)

Wednesday, September 3, 2008

Round 4

Happy 22nd Birthday to my little brother, David, today!

Hard to believe, but I am again hooked up to the chemo ball for round 4! The time between treatments goes by pretty quickly.

We were able to get away for the long weekend for a much needed escape; my aunt and uncle were not heading up to their cabin and offered to let us use it. It was great to have a change of scenery for me, and be able to sit outside and enjoy the cool mountain weather…fun for Justin to do one of his favorite hobbies, quading with friends! Normally I’d be along for the ride, but I had to be honest with myself, I'm a weakling right now, so I opted out except for a few leisurely trips when there were kiddos in tow, and I could be a passenger. We had a great time, thank you Kent and Gail!!

Justin, Kevin and Jackie got a little muddy after a rainstorm!


Sam and Rachel...that's my helmet she is wearing, does this mean I have the same sized noggin as a 5 year old? At least it got used :)

I had a few exciting events over the last two weeks that I could have blogged about, but I admittedly wasn’t feeling too well. Two weekends ago on Saturday morning I woke up unusually late and strolled out to the family room and sat down on the couch. I was gearing up to eat breakfast when I started to feel a bit nauseous, and stood up to make my way to the bathroom. The last thing I remember is feeling a little ‘weird’ as I walked in and sliding down with my back to the vanity…then I remember Justin over me talking on the phone telling someone in a slightly panicked tone that I just finished a chemo treatment on Thursday, and wondering who the heck he was talking to. Then I realized I was lying on the bathroom floor, and being the germ-a-phobe I am knew I was not their by choice! Justin helped me sit up, and by this time I deduced that I had passed out. Justin had been in the family room with me when I got up to go to the bathroom, and heard a commotion, something being knocked over. He went in to check on me, and I was unconscious, white eyes, and stiff. He tried to wake me up with no success, and that’s when he called 911. After what he said was about a minute is when I came to. The fire department was at our door within a minute of when Justin hung up the phone, I was very impressed. He helped me out of the bathroom and back into the living room where there was a buzz of activity with about 7 fire fighters and 2 EMTs. They checked my blood pressure, sugar, heart rate and everything seemed within the normal range, however they were worried that I had had a seizure based on what Justin described to them, and they wanted to take me to the ER. We live only about 2 miles from the hospital, and being the cheapskate I am I decided that since them taking me wouldn't get me in any faster if I absolutely had to go that I’d rather drive myself, rather, Justin drive (I do still have some common sense!) One of the nice fire fighters told me that he was worried that the cancer had spread to my brain, I just smiled and thought, or... maybe I just stood up to fast : ) No reason to jump to awful conclusions right away!

We signed the paper work that said we declined to be transferred to the hospital by them and gave the on call Oncologist from my office a call to see if we needed to actually go to the ER or not. We waited about 30 minutes to hear back and we weren’t too surprised to hear him say "yes", so we packed a few things up and headed over. I must say that one positive of being on Chemo is that you get the royal treatment at the ER! They don’t want you sitting around people who could get you sick, so they took me right back to a private room. It’s funny the looks you get from people when you’re wearing a mask in public…I used to think I needed to avoid people with masks, but now I know people with masks were more than likely trying to avoid me and my germs : ) Even though I didn’t have to sit in the waiting room long, we spent the rest of the day at the ER, of course you have to go through their protocol of tests, but we really just were looking to have a CT Scan of my brain and abdomen to rule out blood clots, or internal bleeding.

At 9:00 or so that night we got the okay to be discharged, and this is what they concluded (directly from my discharge paperwork):

“Today it has been decided that you had Syncope (Fainting Spell).”

Well I figured that much….but I guess its better to be safe than sorry! We were glad that it wasn't something more serious.

I took it easy for the next few days, and then had another what I will call ‘episode’, this time I had a significant amount of blood in my stool again. So again I called my Oncologist as I’d been instructed to do. As part of the chemo cocktail, I am on a drug called Avastin, which is designed to slow blood vessel growth. The hope is that this will not only target the tumor in my colon, but the main focus as I understand it is for the liver tumors since the tumor in my colon can ‘easily’ be removed with surgery at this point. The drug by nature is making me more susceptible to bleeding, particularly from the colon tumor so I’m supposed to be on high alert for any blood that may be passed. My doctor wanted me to come in ASAP that day, so in we went. The first thing he said when he walked in to the exam room was, “You’re scaring me.” I had to laugh, it had been an eventful past few days between the ER visit and now this. I told him that seeing him every other week just wasn’t enough! We talked about the bloody stool, and how many more doses of Avastin he was planning to administer. He was only planning to give me one more dose (round 4) before giving my body a break, and ceasing far enough in advance to get it out of my system in preparation for the colon resection surgery. He decided that I should have my blood drawn every day for the rest of the week to be sure that I wasn’t bleeding internally and to monitor my other numbers.

The rest of last week was pretty unremarkable, I am conquering my fear of needles after 5 consecutive blood draws. Back when I posted about the port-a-cath, I had no idea how great it would be. As long as it keeps working properly I’m able to get blood drawn from it as well as the chemo administered through it. IT IS GREAT! Just one poke every time, guaranteed!

We had some good news yesterday at my pre-chemo appointment with the Oncologist, but before I go into detail about that, I'll mention that we decided not to do Avastin this round. We elected to do this to prepare for surgery, which will be no sooner than 6 weeks from the last Avastin treatment two weeks ago. I'll continue on the other Chemo drugs in the meantime, and at some point in the future, after surgery on the colon tumor I may or may not be put back on the Avastin. Now, onto this good news!


There is a tumor marker that they monitor through my blood work called Carcinoembryonic antigen, or CEA. A normal person has a number somewhere around 2.5, and someone with cancer like me has a number off the charts. Back in the middle of July, my number was 66. Two weeks ago it was at 35, and as of last Friday, 8.8! This number will probably still fluctuate from week to week, so it could go back up…and the Dr. warned that it can be an unpredictable indicator of how chemo is working….but with such a significant drop, we’ll take it for now! : ) I should also be getting an update on the liver tumors this week after the Dr. has a chance to compare my initial CT scan from back in July to the one taken in the ER. So stay tuned and keep your fingers crossed that there will be some more good news from that : )

A few weeks ago we had some requests for pictures (this one is for you Jody!). I've avoided posting pictures of myself because I'm not lookin my best these days....but I agree that a blog without pictures is a little ho-hum, and Justin has taken on the role of cancer historian…here are some of the latest (and ones I'm willing to publish!)….even a video he took so you can see all the exciting action live from round 3.



Above - The infamous "Ball-o-Chemo"




My new best friend, Port-a-Cath





video




I'll be sure to post any news we get this week about the CT Scan comparison. Hope you all had a great Labor Day weekend. Thank you for your prayers and support!

Wednesday, August 20, 2008

3rd Round

Having been a runner for most of my life I've been mentally comparing my chemo treatments to workouts or a races. The mile, or 4 laps around a track (which also happened to be my favorite race in high school) works nicely since I've got 12 treatments of chemo that I'm shooting for, every three is a lap. Figuratively speaking I'm just about finished with my first lap of a mile race, and feelin good!

I haven't had much to report by way of news since round 2, it turned out to be much better than round 1, and I only had a few days where I felt really bad. I have noticed the nueropathy side effect more in rounds 2 and 3. My hands and feet have been a little numb, clammy and at times a little weak...some people have lasting problems with this after they conclude chemo treatments and others don't.

For this 3rd round the doctor switched me to a new anti-nausea medicine and I'm happy to report it seems to be working the best out of the three I've tried with little of the blurred vision, headaches etc that the others seemed to cause. I spent my time at the clinic yesterday watching the Olympics and chatting with my one neighbor, Maryanne, a fellow Colon Cancer patient. I'm not sure how old she was, I'm guessing late 60's early 70's, but she was very up beat and positive. She was on her 10th of 12 chemo treatments, which is always inspiring for me to see someone finishing strong.

Another reason for the lull in blog entry since round 2 has been 'blogger's block'. I mentioned that in my next few posts I was going to attempt to articulate some of the things I've learned up to this point...its proving to be a much harder thing to do than I thought. I started a few posts but was never able to finish them or feel like I was expressing what I wanted to express.

So here is a brief, but very humbling lesson that I've learned. I've mentioned this before, but words just don't express how supported I've felt from friends and family. Every email, voicemail, comment on this blog and text message that I've received have meant more to me than the people leaving it will ever know. The same goes even more so for all the prayers, and the good I know they are doing.

We've had more offers to come help out with chores around the house, and yard, dinners and errands than we know what to do with. There is really no other way for me to describe it other than just a complete outpooring of love. I've had several friends say to me something like, "I'm so sorry that it takes something like this happening for me to really make the effort to stay in touch." I'm equally as guilty and wonder what kind of friend I've been through the years to people as they have gone through difficult experiences in their lives...and what kind of friend I've remained in my 'ordinary friendships' where there haven't been any major events to motivate us to stay in touch better. Why is it that I haven't made more time to keep in touch? Well I guess the answer is easy, I thouht I was too busy. Knowing this makes all the support we've received all the more humbling, followed by feelings of not being worthy to receive it.

So this is the lesson I'll say has been reiterated instead of learned: People are good, and they have good hearts. I say reiterated, because I've never had the belief or thought that mankind as a whole had 'bad hearts', but through this experience I've just been reminded of the goodness of people. They have gone out of their way to show love and support to myself and family. I'm inspired to try and be the best I can be because of their examples.

As always thank you for your prayers!

Friday, August 8, 2008

2nd Round

On Wednesday I started my second round of Chemo! It has been much less eventful than the first time around, and I haven't even been all that sick... yet :) After the first round I didn't have any of the potential side effects common with my particular drugs, the most frequently reported of which has to do with intense sensations of pain with cold on the hands and in the throat. It was described to me like a feeling of a 'peel' in your throat when you swallow something cold. This round I've experienced a little of that, but it hasn't been too bad. This is one of the side effects that often times gets so bad that it prevents people from continuing chemo treatments all together.

We met with Dr. Bachrach at Desert Oncology Associates on Tuesday. He was recommended to us by several Doctors, and the appointment went really well, he was very thorough and optimistic...this 'professional optimism' as I like to call it is very important to me. I really don't have a desire to be treated by a Doctor who doesn't believe that I have the chance to beat this, regardless of what the statistics may point to. I may have already mentioned this in a previous post, but we stopped looking at statistics. I had always liked 'statistics' and what information they can offer or infer....until this all happened. I'm an individual, my situation is unique and I'm not planning to be someone's 'statistic'.

So after feeling good about the meeting with Dr. Bachrach we were able to schedule my next Chemo appointment for the following day, Wednesday. The clinic is literally 3 minutes from our house in the Medical Plaza by the hospital...how could it be any more convienient!? This time I didn't have a private room with a bed like at Mayo, the treatment room is just lined with recliners and 'trees' (IV poles and pumps), not really even any room to have someone sit there with you. Most people sit in there for a couple hours and read, sleep, watch movies etc. while they are getting pumped full of drugs. My neighbors were Patricia, a woman in her 60's with Lung Cancer and an older gentleman who I never got the chance to talk to, he was a little hard of hearing and pretty focused on his crossword puzzle. Patricia and I had a nice chat, and I was inspired by her optimism. She told me she was jealous that I still had my hair...I was the only person in the room who did. I'm not really sure why my drugs don't cause it to fall out for the majority of people, and I had mixed feelings about this. Don't you think it could be kind of fun to have an excuse to be a woman and shave your head? :) I think I'd even stick some little bows on with honey like you do for bald newborn girls...

After I was done at the Clinic I headed home where a home health company delivered a 'ball-o-chemo' that serves the same purpose as the pump I had at Mayo, with the added bonus of no pumping noise ever 5 minutes. Later a nurse came and hooked it up to my port-a-cath and its slowly been shrinking over the last 48 hours. I'm pretty facinated with this little thing and how it works. The nurse will come back this evening to un-hook me and I'll be tube free for another two weeks!

One thing that has been surprising to me is how much I've learned in this past month. I've been told by other cancer patients that I will be amazed at the life lessons I will learn through the experience, lessons many of them say they would go through the whole trial again to learn. I think my next few posts I'll try and share some of these 'lessons' that I'm talking about. I only hope that I can put them in to words!

Hope you all have a great weekend!

Monday, August 4, 2008

I really like this quote that my dad shared with me,
“… the tests of life are tailored for our own best interests, and all will face the burdens best suited to their own mortal experience. In the end we will realize that God is merciful as well as just and that all the rules are fair. We can be reassured that our challenges will be the ones we needed, and conquering them will bring blessings we could have received in no other way.

If we constantly focus only on the stones in our mortal path, we will almost surely miss the beautiful flower or cool stream provided by the loving Father who outlined our journey. Each day can bring more joy than sorrow when our mortal and spiritual eyes are open to God’s goodness. Joy in the gospel is not something that begins only in the next life. It is our privilege now, this very day. We must never allow our burdens to obscure our blessings. There will always be more blessings than burdens—even if some days it doesn’t seem so. Jesus said, “I am come that they might have life, and that they might have it more abundantly.” Enjoy those blessings right now. They are yours and always will be.”


What a great reminder to me on my ‘down’ days to look around and smell the roses. One thing that I’ve come to realize in this short time is that we all have experiences in our lives that test us, some seem greater to those on the outside, but to the person in the midst of it all it’s a struggle/big deal. We have to remember this as we look on others during these difficult times and try our best not to judge their course of action or attitude etc because really they are probably trying their very best.


There really isn’t much reporting or updating to do, but it’s very early in the morning and I’ve thrown in the towel on trying to stay asleep in bed for the night. Blogging seemed like something I could do to pass the time. Any closet insomniacs who have some good advice for staying asleep without using drugs?


I don’t think I’ve adequately thanked Justin for all that he does for me. Not but 5 minutes ago I was crouched over the toilet, trying my best not to wake him up, but he came running in with a bottle of water for me just woken from his deep sleep. He’s also got a special way about him of kicking me in the pants to keep my attitude on track when it starts to veer one way or the other through this experience. I guess this is one of the many positive things that spouses are good for. : ) I can’t imagine how different of an experience I’d be having if this diagnosis had come about 7 months earlier. Happy 7 month anniversary to us!!






In the last post I wrote about trying to get into Mayo Scottsdale. Well we had our appointment with the oncologist, who seemed very good. However after a little more exploration we have decided not to pursue treatment there because our insurances are not accepted. So we will most likely use another oncologist here in the valley to administer the chemo regiment that was outlined for me at Mayo Rochester. And from there we will just play it by ear to see what will happen with surgery, follow up visits to Mayo etc. I have an appointment with a highly recommended oncologist here on Tuesday, and we hope to resume my next chemo cycle starting Wednesday.


As always, thank you all for your support and prayers!