Tuesday, September 11, 2012

One Step At A Time

Yesterday was a day filled with ups and downs. It all began with my alarm waking me up at 6:00 AM. After weeks of walking and running on the treadmill, today was the day that I was going to attempt to run the three mile route I have run so many times in the past. It was dark and the air was cool as I walked out the door. I set my iPhone to the Nike app that tracks my pace, route and calories burned. I selected a new playlist I recently made for Jason. Songs from the 80's otherwise known as "Power Ballads". I decided the songs like Something to Believe In by Poison, Another One Bites the Dust by Queen or TNT by AC/DC would be motivating as I knew this run was going to be a challenge. As usual I set shorter goals for myself throughout my run to make getting to the end easier…the corner, the hill, the stop sign or the end of the song. By the time I finished, I had run the full three miles without stopping and at a faster pace than I had run since being diagnosed with cancer. It was an amazing feeling! This was a run I had been looking forward to for quite sometime and it brought me the courage I needed to face a day that I had been anticipating for quite sometime.

After getting the girls off to school I spent the morning preparing myself mentally for another doctor appointment to discuss more surgery. My hope is that this will be the last and final surgery giving me the opportunity to FINALLY move on with my life and leave it all behind. But there was more at stake. We have met our annual insurance deductible. It starts over on October 1st. Needless to say I have been anxious to have this surgery done by the end of September. I have been pushing the doctors to move forward with this surgery so that we can meet this deadline. And this is taking into consideration whether or not insurance will even cover the surgery. I would give anything to alleviate the financial strain these surgeries have put on my family. Scheduling the surgery in September would also give me enough time to heal so that I would be able to attend a dear college friend's wedding in Palm Springs at the end of October. I have been spending a lot of time in prayer asking God to help me let go and let him work everything out for the good of all of those involved. Asking God to help keep the insurance bills minimal. But most of all I have been asking for peace.

After lunch, my gracious husband came home from work to come with me to the appointment. He knew how anxious I have been lately and came to the appointment with me to be a support. While driving to the appointment I was sick to my stomach and had to make an effort to keep myself calm. Luckily I was the one driving so I had to somewhat concentrate on other things like keeping the car on the road. I did miss an exit.

 Once we arrived, Jason and I sat down in the waiting room and immediately began joking about the music that was being played...it was very loud and sounded like the music from The Phantom of the Opera. It lightened the mood for the time being. Soon, my attention was diverted to watching the doctor visit with another patient that was clearly there for cosmetic reasons (face lift). I envisioned myself jumping up and telling the woman to look at my face and be appreciative of the beautiful flawless face she already had. Instead I just sat there paging through a magazine.

The first half of the appointment went really well. My doctor and I came to an agreement on what needed to be fixed. He explained the procedure which will involve making an incision at the corner of my eye allowing them to access the transplanted bone underneath my eye. The bone will be cut down to allow for my eye to come down. Tissue will be transplanted again from my stomach to fill in areas that are still sunken in. Fortunately, the healing time will not be as long and intense compared to the last surgery. I was feeling pretty good at this point until the discussion turned into timing and insurance. I felt my body tense up as I attempted to let my doctor know the urgency of scheduling this appointment as soon as possible and asked him whether or not insurance will be covering this next procedure. He understood, but was unable to make any promises or give me any answers.

I was then shuffled to another room to have some photos taken of my face not only for records but to accompany the letter that will be submitted for approval by insurance. I thought to myself that once the insurance company sees the pictures they will have no doubt about covering the surgery. However, the woman that was taking the photos is also responsible for coordinating the surgery and insurance coverage. When my doctor explained to her the necessity of scheduling the surgery in September, she immediately looked at me and sharply said "no chance". Little did she know that at that moment her words and negativity drove a knife through my heart and my hope was gone. Jason kindly reminded me that her experience involves scheduling face lifts or nose jobs…all surgeries with no urgency or limited budgets. My case is completely different.

On the way home, I broke down crying. I felt the weight of the world on my shoulders. The appointment did not go as I hoped it would. Unfortunately, our chances are not good. My heart broke knowing that our trip to Palm Springs may need to be cancelled and that our medical bills will be filling up our mail box once again. Should I choose to wait to have surgery after our trip to California then it affects the holidays, a time of the year that I look forward to and so desperately need to experience the joy it brings. If we get no insurance coverage, I may have to face looking like this for the rest of my life. No words can express the NEED and DESIRE I have to finish this journey and move on....to be able to look forward to trips, holidays and events without hesitation. Now we have to wait and hope for the best. Later on in the day, I was feeling pretty down.

To occupy my mind, I decided to get my daily dose (to be honest the 2nd or 3rd dose) of Facebook updates. I came across a friend's status update that meant so much more to me than she probably will know. It read: 

Running is such a great analogy for life. If you think about it too hard or try to look too far down the road, it's easy to get overwhelmed and discouraged. Instead, you have to focus on getting to the end of the block, to the next road sign, to the next mile marker. One step at a time, with belief in yourself (and trust in God), and you'll eventually get to your destination. Just take one more step. You can do it!

It was so ironic that I had successfully run the three miles this morning using this analogy…taking one step at a time and believing in myself. Yet, when it came to my appointment this morning and worrying about the potential financial burdens of the upcoming surgery and its timing I lost complete focus. I was unable to trust in God to get me to the final result I have so desperately wanted for a long time - a fixed face. Instead I was depressed, defeated and angry…unable to see any hope. Reading my friend's Facebook status helped me to realize I need to change my focus. Getting to the end result…a fixed face…is going to take baby steps. One step at a time. To not get overwhelmed and discouraged. I can do this and I will get there by believing in myself and trusting in God. In other words, letting Go and letting God. A saying I seem to have to constantly remind myself over and over and over and over. Another lesson learned throughout this journey. And just when you think Facebook can be at times a negative influence, it also can be a positive one as well allowing users to bring encouragement to others. Thank you Jen!

Beware in your prayer, above everything, of limiting God, not only by unbelief, but by fancying that you know what He can do. Expect unexpected things, above all that we ask or think. Each time you intercede, be quiet first and worship God in His glory. Think of what He can do, of how He delights to hear Christ, of your place in Christ; and expect great things. --Andrew Murray

I am going to continue pray for the best and for the ability to trust that God's timing is the best timing.  I know he will provide for our financial needs in one way or another.  He made it happen with the last surgery and he can do it again with this next surgery.

Friday, April 13, 2012

Passionate Patience

"There's more to come: We continue to shout our praise even when we're hemmed in with troubles, because we know how troubles can develop passionate patience in us, and how that patience in turn forgets the tempered steel of virtue, keeping us alert for whatever God will do next. In alert of expectancy such as this, we're never left feeling shortchanged. Quite the contrary - we can't round up enough containers to hold everything God generously pours into our lives through the Holy Spirit." Romans 5:3-5 The Message

Ever since I have left the hospital God has been working on developing in me this passionate patience. I am trying to be joyful for the things God has done for me these past few years and not allow self-pity to set in. I am working hard to keep trusting God and asking him to keep my joy full and abounding, even in these prison walls. I know in the midst of this storm, God is purifying and cultivating endurance in me. I am going to need this endurance as it will take sometime to completely heal. After all I have been through, I have definitely found the reasons for trials in life and the difference it can make to maintain our joy despite our suffering.

This past week, God has slowly started to reveal to me his plan and the miracles that have taken place since the day we started planning this surgery. It took over a year for me to convince the surgeons to do this surgery and for them to feel comfortable moving forward. I have learned that this wait was imperative to the success of the surgery. For when the surgery took place, it had been two years of being cancer free. A huge milestone for my type of cancer...for it is rare for this cancer to return after two years. My surgeons then felt it was safe to move forward. I too recently learned this was a huge step of faith for them to take. The risks were high and they were not confident it was going to work. They struggled for many months on whether or not it was a risk they were willing to make. On Monday, I had a follow up appointment with the surgeon who made my diagnosis and was on the surgical team. Without him I would not be here today. He is a very calm and collected man, yet warm and compassionate. Rarely have I seen him show any emotion over these past three years. At the appointment, completely out of character my surgeon raised his hands above his head and gave a cheer...he had reason to celebrate as the surgery was a success. This success was a miracle as the odds were not in my favor. God has used this man in more ways than one. My surgeon has shared with me multiple times how he second guessed the decisions he made during my surgeries causing him to go back at the last minute and make revisions. If he had not second guessed himself, I would most likely still have cancer and this last surgery would have failed. I know in my heart it was God nudging him and leading him to what needed to be done. God has been there all along during each phase of my surgery. Everything took place when it needed to happen and with surgeons that were among the best in their field. At times I would get frustrated and ask God where he was in the midst of it all. I did not see his plan at the time. Now, I am enjoying watching God's plan unfold and it gives me the strength to keep looking ahead and patience while healing takes place. It is encouraging for me to know God has had his hand in this all along and because of this, I know the end will be AMAZING!

God has perfect timing; never early, never late. It takes a little patient and faith, but it's worth the wait.

Today, with God's help, I feel at peace. I am starting to see signs of healing taking place. The swelling is slowly starting to go away. The skin graft is starting to blend in with the rest of my skin. My eye no longer droops down and my eyelid can close. I do struggle with double vision which should correct itself over time. I will begin Physical Therapy next week to help rebuild the strength in my shoulder as muscle and bone were removed to rebuild my face. Every day tasks can be difficult for me as my shoulder is very tight. Only time will tell whether or not further revision will be needed. As of now, things are going as they should and the surgeons are very pleased with the outcome.

I am so thankful for all of the meals being delivered to our home to keep my family fed and to give me time to rest and heal. Thank you all for your prayers and continued support. Those prayers kept me safe during the 18 hour surgery and are now helping me through my time of healing.

With love,

Tuesday, April 3, 2012

Photo Booth

This is extremely difficult for me to say and never have I thought would I would find these words coming out of my mouth...I have found a flaw in the Apple Computer. Yes...I know...coming from someone who has just about every product the Apple Company offers, it is shocking to hear. But it has happened and I am about to drag an application on my hard drive to the trash folder and send it into never never land. It is the Photo Booth Application. Never...EVER...look at yourself in the Photo Booth Application after having massive reconstructive surgery. I am just saying.

These past couple of days I am finding myself shifting from being strong emotionally and weak physically to now being weak emotionally and strong physically. And it all started with finally looking at the aftermath of my facial reconstruction....in Photo Booth. My face appears as it has been stuffed liked a Turkey on Thanksgiving day. My right eye has been shoved up into my forehead. I am black and blue, not only because of the surgery but because of the blood thinners. I now see two of everything and find myself bumping into things as I walk down the hall. I have an incision extending from my armpit to my waste and another incision down my forearm requiring occupational therapy to get the range of motion back into my shoulder....both of which are also black and blue. In a nutshell I look and feel like a train wreck. I have notified Jason that I will not be leaving the house for months to come and by no means is anyone allowed to come inside our home unless I am locked away in our bedroom upstairs. And as for the Aerosmith concert in June, (did I just admit we have tickets?) he might as well start looking for someone else to go with him. My mind knows that in time things will look better, yet in my heart I am feeling defeated and hopeless. The ugliness I so wanted to go away with this surgery has manifested itself 100 times over. I am overcome with sadness and regret.

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

During a hospital visit this week, my sister brought me a bag of reading materials. It included a new magazine called Life.Beautiful. It's subtitle is "Faith for your Journey." The first thing I think...no, I KNOW...I will do when I get home is to order a subscription to this magazine. It is inspiring, creative and filled with wonderful articles of faith. Today, I read an article called "Rebuilding Through Faith." It was in this article that I found this verse in James. It was the first part of this verse that gave me a reason for my suffering and a purpose during my battle with cancer. And now it is the last part of this verse that gives me hope. For in the last part of this verse I feel God lovingly nudging me to persevere through this time of pain, suffering and healing..and in the end I will be complete. Not only physically, but spiritually as well. And cancer will be behind me forever.

The goal is to be able to go home tomorrow. For that to happen I will need to have the staples removed from my back and the last drain removed from my incision. I am so looking forward to being at home in the comfort of my own bed with home cooked meals. Yes, I will miss the time I have spent attempting find the top 10 informercials ever played at 3:00 in the morning and the hospital's diet caffeine free coke that tastes like soap. But I am hoping that being surrounded by the love of my family will help me to focus on the good things in my life and heal the part of me that needs to be healed the most now....my confidence.

"Whatever is true, whatever is honorable, whatever is just, whatever, is pure, whatever is lovely, whatever is commendable - if there is any moral excellence and if there is any praise - dwell on these things." Phillippians 4:8

Thank you again from the bottom of my heart for your prayers for me this past week. Each time I hear the amazement and surprise in the surgeon's voices as they talk about the success of the surgery, I smile quietly knowing it is because I had prayers being said on my behalf.

With Love,


Sunday, April 1, 2012

Life in the hospital

Jason just left to go get a good home cooked meal and spend sometime with the girls. This morning, he showed up with some beautiful flowers to decorate my boring hospital room. He spent the day with me by my side, quiet when I needed it or as a good opponent in cribbage when I needed it. He even let me win a game....something I know does not come easy for him. I am so thankful for the man that he is, trying to be a support to me while at the same time working a job and spending time with the girls. How did I get so lucky?

Well I am hoping it isn't too early (knock on wood) to say that I am finally on the mend and that the worst is behind me. The surgeons are very pleased with the progress I have made - I think they have all taken a big sigh of relief each time they come in to check in on me. I am so thankful for each and every one taking the VERY long journey to mend my face and make it look the best it can possibly be. I am especially thankful for my Surgical Oncologist that cared for me during cancer. The night does not end without a call from Dr. K. asking the nurses to hold the phone up to the Dopplar monitors....monitors tracking the strength of the newly transplanted vein carrying blood to the translated tissue, bone and skin. I can tell he really cares about me and the outcome of this surgery. Hearing the monitors showing a strong working vein helps not only me to sleep well at night, but helps Dr. K to have some peace at night. The nurses have all been so wonderful to me..truly servants at heart and many of whom are very familiar to me due to the many stays I have had on this floor. I can go to sleep at night knowing I will be well taken care of. Someone is watching over me.

My face is still pretty swollen. I haven't had the courage to look in the mirror yet to see the changes..the ones I have been told I will be very happy with once the swelling goes down. I am starting to get up and around for walks around the nurses station. I have an incision down the side of my back from my shoulder blade down to my waist. It was stapled shut after some tissue and bone were used to reconstruct my face. The incision is very tight and at its worst feels like someone is digging their fingers into my back and pulling it apart. There are two drain systems connected to the wound on my back to collect any excess fluid or blood which is extremely uncomfortable. I have a feeling it will take months of rehab to get use of my shoulder back again.

Yesterday I was at my worst. I was not feeling good and feeling a lot of pain. I began to question my sanity and the decision I made to fix my face, despite the fact it was medically necessary. I could not believe I had put myself through this once again. I made a few phone calls in the middle of the night to Jason just to hear his voice...something that always brings me calm in the midst of a storm. I am feeling very lonely and missing the girls so much. You never realize how much space children take up in your life and fill it with joy and love. Both Mackenzie and Kendall have beautifully decorated some posters to hang in my room. Both of the posters say "My Mom Can Believe." I smile each time I look at them. I believe for them.

Last night I was feeling defeated.... instead of taking two steps forward I felt as I had taken two steps back. Something hard to swallow when the two steps back take you to a place you never want to go again. This morning I woke up and read a Facebook posting from a friend. It was as follows...

HE will silently plan for you,
His object of omniscient care;
God Himself undertakes to be
Your Pilot through each subtle snare.

He WILL silently plan for you,
So certainly, He cannot fail!
Rest on the faithfulness of God,
In Him you surely will prevail.

He will SILENTLY plan for you,
Some wonderful surprise of love,
No eye has seen, no each has heard,
But it is kept for you above.

He will silently PLAN for you,
His purposes will all unfold;
Your tangled life will shine at last,
A masterpiece of skill unfold.

He will silently plan FOR YOU,
Happy child of a Father's care,
As if no other claimed His love,
But you alone to Him were dear.

- E Mary Grimes

His purposes will all unfold; Your tangled life will shine at last, A masterpiece of skill unfold. Words of encouragement that could not have better timing. I did not take two steps back, but instead I took two steps down a new road with a glorious plan I am convinced God will reveal to me in his own time. My tangled life of cancer will shine at last.

Thank you to all of you that have been quietly praying for me and my healing. I am honored to have each and everyone of you in my life whether you are a friend, family member or stranger. I often visit Facebook and My Blog to read the words of encouragement that have been written by each and everyone of you. Please know they have no gone unnoticed.



Patient has typed this with one eye open and monitors taped to fingers. Patient to not be held responsible for spelling and grammatical errors.

Thursday, March 29, 2012


Hi! Sue has had another good day She was able to get out of bed and sit in a chair a few times. She is feeling really good, except her shoulder really hurts. It is the location where they took a portion of her scapula. I'm not complaining, however. She is doing a great deal better than when she had her big surgery a couple of years ago. She can't really type much, but she is looking at Facebook and her e-mail.

I told her this afternoon that I am ready to hand the blog back over to her. Yet, here I am giving today's update. I really hope that she will be ready to take over tomorrow.

The doctors are all still very pleased with everything. They are all still monitoring the dopplers closely. I think they'll fell a lot more confident with the health of the transplanted veins after another 24 hours. Her graft looks good, as well as her closure sites. They did start to discontinue a couple of drugs today. She also has been able to have some clear nutrition; jello, broth, flavored ice, etc. She also did comment that she would like some McDonald's french fries. If she is craving those, it definitely means that she is hungry.

So, I'm happy to report that it was an uneventful day for Sue. She should be moving out of the ICU tomorrow and into a regular room. It doesn't feel like as big a change as it did the last go around. This ICU is quiet, and pretty laid back. Sue is accustomed to more noise and interruptions in the ICU setting.

Please keep praying that her veins and arteries continue to stay open, her swelling begins to subside, and the pain in her back starts to fade. We hope that you all have a great weekend!


Wednesday, March 28, 2012

A slow day

Sue felt that the day dragged today. As the day moved along, she started to feel a little antsy. After everything her body was put through yesterday, she was surprisingly comfortable today, from a pain perspective. She is just struggling with being comfortable on her bed. She should be sitting in a chair some tomorrow, and then hopefully out of the ICU on Friday. She is looking forward to it, but she definitely wasn't ready for it today.

A number of doctors came through today and all are are pleased with her current status. It's very evident that they are most focused on her veins and arteries that were transplanted. They are hooked up to Doppler monitors and being listened to constantly. Dr. Khariwala apparently has phoned the nurse a number of times with sole purpose of listening to the Doppler in the background. One of the nurses wanted to hook him up with a baby monitor that he could listen through. They wil continue to keyed on these for another 48 hours or so.

Sue is continuing to see additional swelling in her face. This should stop late tomorrow, and then hopefully start to come down a little a day or two later. Her eye is completely swollen shut and that is a little aggravating for her. She also seems a bit uncomfortable with the sutures in her side. Hopefully, she'll do okay when they start weaning her off of the pain meds.

I wouldn't be surprised to see Sue do a short update tomorrow. I would be more than happy to hand the reins back over to her. Thank you for all of your ongoing prayers and support. We cherish you all.