Friday, December 17, 2010

Humbly Waiting

Right now as I sit listening to John Waller's song "While I'm Waiting" I take on a whole new meaning to the words.  I find myself clinging to the words as he sings.

 "I am waiting on you Lord, and I am hopeful.  I'm waiting on you Lord, for it is painful, but patiently I will wait.  I will move ahead bold and confident, taking every step in obedience.  While I'm waiting I will serve you, while I'm waiting I will worship, while I"m waiting, I will not fade.  I'll be running the race, even while I wait. I am waiting on you Lord, and I am peaceful, I'm waiting on your Lord though its not easy, No,but faithfully I will wait."

I am humbled this week as people have reached out to me.  I'm humbled by the way my husband has sacrificed for me.  I'm humbled by the intimacy of this cancer and the situations I've had to walk through with doctors this week.  I'm humbled by the way God has held my hand and helped me put one foot in front of the other through it all.  Even now as I write I feel shaky and sick to my stomach.  I'm surprised how weak my body is after this week's surgery and today's outing for a CAT scan.  I feel in this moment that I'd like to crawl into a ball in my bed and wake up from this bad dream, and yet I realize just like in the words of John Waller's song above, I cannot fade.  I have to run the race as real treatments haven't even begun. 

As I walked down the hall to check in for surgery this week I looked at Billy and said, I don't want to do this after all.  He took my hand firmly and together we kept walking.  I look at myself at a positive person; one that can face difficulty bold and confident.  But I felt afraid and had to keep walking down that hall with obedience, though it was not easy.  We got the news today that the fluid sample they took came back benign.  And I can't remember if I mentioned that the doctor's in Oklahoma also found the ECC and Pap tests to be benign.  My ovaries and uterus looked good in the surgery.  I find I'm having to focus on these things to feel blessed and rejoice that there is good in the hard moments. 

Today I very slowly and sorely made my way to have another CAT scan.  I felt at peace about this until I get there and realized today was when they would determine how I would lay in the machine every day when I go for radiation.  They took pictures so that other techs would always place me in the exact same position.  They marked my body with red and black to show where the radiation would need to work.  They stickered me as a marker in the scan images.  I found myself tense and shaky; unable to let my mind or body relax. I was genuinely afraid.

I grabbed a devotional book this morning that ask me to read Romans 8: 26-28,31.  I didn't know I needed this verse at the time, but it came to me again tonight as I try to shuffle through my thoughts. 

"And the Holy Spirit helps us in our weakness.  For example, we don't know what God wants us to pray for.  But the Holy Spirit prays for us with groanings that cannot be expressed in words.  And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God's own will.  And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.  What shall we say about such wonderful things as these?  If God is for us, who can ever be against us?"

Tonight I find it difficult to know how to pray, for I am humbled how much I need our Savior.  So I pray the words of the song above; that I am able to wait patiently, be hopeful, be bold and confident, taking every difficult step in obedience...all while I worship and praise the Savior that is FOR ME and holds my hand.

Wednesday, December 15, 2010

Post Surgery

Today I had my 2nd surgery in 5 weeks and I have to say I got out of bed frustrated.  I didn't want to put on my purple "cancer fighter" shirt.  I didn't want to go under anesthesia and sleep the next couple days away.  I didn't want to pay for the treatment.  I just didn't want to have this done. 

I had shared a song with Brian and Traci the other day and the long chorus goes like this.

So lets go dancing in the minefields
Lets go sailing in the storms
Oh, lets go dancing in the minefields
And kicking down the doors
Oh, lets go dancing in the minefields
And sailing in the storms
Oh, this is harder than we dreamed
But I believe that's what the promise is for
That's what the promise is for
What came to my mind today was not dancing or sailing, but I was focused on the line "Kicking down some doors".  This entire process since diagnosis has drug on for 6 weeks.  Nov 9th I had my first surgery and since then I've seen 5 doctors with 9 visits, Had two scans and now another surgery.  I feel like the diagnosis and treatment planning process is taking forever and I'm ready to move on.  However, we want to know 100% where the cancer is and  100% what the correct treatment should be so we're kicking down some doors to figure it out and its not always an easy or fun process.

Yesterday at about 11:30 am my Gyn-Onc from Oklahoma City called me and said they really believe this cancer began with an endometriosis implant into my episiotomy scare tissue.  This caused her concern that if I had some endo that would act like this I could have more elsewhere.  They also said that they don't get another chance to radiate this part of my body because the tissue will be damaged and my organs will be very fragile.  In the event that they had found something today they would have needed to do a radical hysterectomy, meaning they'll remove parts of the rectum, bladder, vagina, cervix, uterus, ovaries.  Then they would need to rebuild some things obviously.  Our prayer was that they didn't see anything new and to the naked eye the doctor said he saw no endometriosis or additional lesions.  They would want to do the radical hysterectomy before they radiated because a simple brush against my bladder or another organ now would leave me a little bruised, but fine.  After radiating the organs are so fragile a simple brush across the bladder could put a hole in the bladder and cause a lot more trouble.  My local doctor agreed with the new recommendations and by 1:30 I was on my way to give blood and do my pre-op stuff. 

So, today they visually checked the ovaries and uterus.  They washed out this entire area, but only after taking some fluid samples to send to the pathologist.What we know now is that the radiation and chemo treatments are what is needed for me.

I got my ECC and Pap results back and they were benign so we know there is nothing hiding there eitehr.  They also stained the tissue they took out 5 weeks ago to see if it would shows estrogen or progestrone in it. If so, this is confirmed a hormonally driven cancer and they will want to go in afterwards and just remove the ovaries. 

We will know results on the stained tissue and the fluid testing in about 1 week  In the mean time, I will go have another CAT scan done this Firday afternoon so that they can begin buildig my unique radiation path.

I am doing pretty good right now as I'm on a pain medication.  They also gave me a little patch that goes behind my ear so that I don't have any nausea like I usually get with anesthesia.  My throat is very sore from the tube they used to breath for me during surgery today.  My ribcage and shoulders are also sore because they blew me up with air to see better during surgery; this always gravitates up under the ribcage an the right shoulder.  The  pain meds don't really help this because it is pressure from the air they didn't get out.   To alleviate some pressure I'm supposed dto walk 400 yards each day, which is truly a chore right now as I'm so week and it hurts through my entire abdomen. 

Tonight we are still celebrating that the location of the cancer is as we expected and we can move forward with treatments now  The ease of mind for Billy & I and for the doctors is very important. 

Thank you for your prayers and concern. 

I also wanted to say thank you for some others I asked you to pray for.
My nephew Taylor got to come home this week afte 7 days in the hospital  His Staph is responding to the antibiotics and his bloodwork started coming back normal.  His heart is not impacted eitehr based on the tests they ran.   Please pray for Taylor and his parents though because the doctor say it will be 120 days before he feels 100%.  He will do physical therapy to get his strength back an the mobility in his leg and foot back to normal.  He has port in his neck where Home healthcare is teaching Danina dn Worley (his parents) to give him four antibiotic treatments at home.  I think they are actually doing this twice per day for about 6 weeks. 
We are still waiting on results for my sister, Katy, and my brother, Josh.
Billy's brother, Mike, does have to go in and have open heart surgery next week because the stint didn't work
Billy took his last final today so he is feeling a lot of relief now and is a HUGE help tome.

I appreciate your prayers for these other family members as well.

Tuesday, December 14, 2010

Surgery Tomorrow

Unfortunately, I don't have a lot of time to explain the details right now, but for those of you that haven't heard I am having surgery tomorrow morning.  The Gyn-Onc on the OU Cancer Institute and the Gyn-Onc here believe it would be prudent to put a scope in tomorrow and physically look at my ovaries and uterus to ensure that there is no sign of endometriosis implants (cancer).  They believe that this cancer began with endometriosis implants in my old episiotomy scar tissue. If this endometriosis acting this way, then they aren't certain that other endo has acted this way.  There are other details I'll share soon. 

Tomorrow I will arrive at the hospital at 5:30 am and should be back home around 11:00.  They will put me fully under anesthesia and will make the incision directly under my belly button. 

Billy is taking me in the morning and then my sister, Amy, will come take over at 8:00 am so he can go take his last final of this semester.  My brother, Josh, is staying the night at our house tonight so he can get the kids up int he morning and get them to school.  I'm so blessed to have family that loves me and helps me so much.

We'll try to update tomorrow.....

Friday, December 10, 2010

A Heavy Week

So many times this week I've sat down and stared at this empty screen trying to find the words to tell the story and express how I feel.  Still tonight it feels difficult, but I will try as I believe this is an important part of this journey.  An old friend posted a few weeks ago that he liked how I refer to this as a journey, but not to forget who my tour guide is.  I think about this now because I am not sure I like the trail I'm being led down.  This week started on a straight trail with the end in sight, but made so many turns each day that I felt lost and unsure. As I begin to question the trail I look to one of my favorite verses, Isaiah 30:21...."Your own ears will hear Him.  Right behind you a voice will say, This is the way you should go, whether to the right or to the left. " This verse is all about the people of Jerusalem and as they made a wrong turn our God would correct them.  I believe He will do the same for us if we are willing to listen. 

My family has had many decisions and obstacles to face this week.  Tuesday, my little sister went to get an ultrasound and give blood because she has not been feeling well and needs to figure out what is going on.  That same day my 16 year-old nephew was admitted to the hospital as he'd been fighting immense pain in his hip/leg, high fever and vomiting for over 5 days.  They had been testing him for septic shock or a viral infection that settled in his hip.  Wednesday they decided to make an incision, about 4 inches on his hip and flush out the infection.  When the culture came back it was Staph.  Yesterday we found out that the Staph is in his blood and today we are awaiting news to know if it has gone to his heart.  Today my brother had some GI testing done in the hospital as he hasn't been feeling well for quite some time.  He got news that there were no polyps, red spots or inflammation, but they've sent off some tests to the lab for things like crohn's disease, colitis, etc.  We also got news that Billy's brother will have a stint put in on Monday and if this doesn't work they may have to do open heart surgery.  In the middle of this I have had three big appointments, which I'll tell you about next.  But for now, I have a hard time not asking why? Why would God put so much on our family at the same time? Why would he do all of this at the holidays?  Why do we have to face so many obstacles and make hard decisions? As I felt heavy with my own appointments and everyone else's I prayed Isaiah 30:21 that God would lead us and that would be willing to listen for His voice.

I went to the OU Cancer Institute on Wednesday where my sister and I met with a Radiology Oncologist (Rad-Onc) that specializes in Brachytherapy.  This appointment was to serve as a second opinion to the type of radiation treatment recommended, as well as inform me about Brachytherapy.  After my consultation and exam with her she questioned if the PET scan was clear enough to tell there was really cancer in the body or if there was something else causing this. She asked that I come back and see her after I met with my next appointment, the Gynecology Oncologist (Gyn-Onc).  My hope was that the Gyn-Onc would be able to clear up the confusion the Rad-Onc had now put in my mind.  Unfortunately, this was not he case as my second consultation and exam posed the question on what type of cancer I actually have.  The pathologist report showed highly positive for P-16, which indicates a cervical cancer.  It was also positive for CEA, which can test high or low for many cancers including cancers of the rectum, lung, breast, liver, pancreas, stomach, and ovary, but not usually the cervix. There was also discussion around an episiotomy scar from when I had Isaiah.  There are studies that show endometrial cancer can grow out of the scar tissue around an episiotomy, though infrequently.  In the end, the Gyn-Onc said I was a puzzle (which I've heard a lot of lately), but also that I am an academic interest, not only because of the rare kind of cancer I have, but because they'd like to understand how it started.

While waiting for answers that day I began to feel frustrated and confused.  I had gone to both of these doctors with the mindset that we knew what I had, we knew the recommended treatment and they were just going to agree or disagree with the treatment plan.  I felt too tired to seek a 3rd opinion if my 1st and 2nd didn't agree. In my lowest moment of frustration this song came to my mind.  "You've got the joy, joy, joy, joy down in your heart. Where? Down in your heart! Where?" and I began to argue with God telling him that I most certainly did not have joy in my heart.  To understand what this meant to me you need to know that my other family-focused blog is themed around JOY! As an adult it has been my mission to seek the pure joy that only our Savior can give. The first Sunday after I learned I had cancer someone spoke at church and said they now understood the verse in James 1 that tells us to consider all trials pure joy and I've been pondering the verse ever since.  God spoke to me with this child-like song, and though I didn't feel the joy, the message was clear...I was not alone in this journey.  My tour guide was still with me and if I would be willing to listen He would show me the path to take.

These doctors presented my case to the OU tumor board Thursday afternoon and called me to discuss the unanimous treatment plan today.  There were 6 Gyn-Oncs, many Rad-Oncs, Pathologists, etc on this board.  They determined that after all this discussion the treatment plan should remain the same as suggested by my hometown doctors.  Prayers were answered that the path we should take would be clear.  I have now had 16 Gyn-Oncs looks at my case from Minneapolis to Oklahoma and they all agree. 

It is clear that there is cancer in the body because I do not have what it called Fistula, which is what the Rad-Onc at OU wanted to rule out.  This is also clear because of the pathology reports showing the type of cancer and the positive margins around the partial tumor removed. A positive margin means that there was no healthy tissue on one side of the tumor, meaning there was cancer left in the body where they couldn't get to it surgically without damaging other organs. 

Thursday, I met with the Medical Oncologist locally to discuss the chemo treatment.  This will require a 3 hour treatment each week given through an IV.

I will have 6 weeks of External Beam Radiation 5 days per week.
I will have 6 weeks of Cisplatin Chemotherapy 1 day per week.
I will give blood once per week.
I will meet with the radiologist once per week.
I will meet with the chemo doctor once per week.

Once these 6 weeks are over I will go to the OU Cancer Institute and the Rad-Onc and Gyn-Onc there will oversee my Interstitial Brachytherapy treatment.  In my mind, this will be the hardest part of this journey and will keep me in Oklahoma City for 4-5 days.  72 hours of this time I will be quarantined in a room receiving constant radiation treatment, which makes me radioactive and does not allow for any visitors.  I will be bed-ridden and given a self-induced morphine drip.  A nurse and doctor will check on me occasionally to ensure there is no infection and everything is working properly.  I was told once that I would have to do this first, possibly next week, but today they confirmed that it will be during week 7 of treatment.  I am finding some joy in the timing as it would have been a difficult way to start this journey.

Its been a hard week emotionally and physically and I greatly appreciate all the texts, e-mails, calls, cards and especially the prayers.

Two other verses that have spoken to me this week are:

Psalms 22:14,15,19  "My heart is like wax melting within me, my strength has dried up like sun baked clay.  Oh Lord, do not stay far away!  You ARE my strength, come quickly to my aide!"

John 16:33 was just given to me by a friend today.  "These things I have spoken to you that in Me, you may have peace.  In the world, you will have tribulation; but be of good cheer, I have OVERCOME the World!"

Saturday, December 4, 2010

Friends For This Season

I completely believe God's promise to provide what we need during this time.  God has provided a "friend for this season" of my life.  Someone who was diagnosed with cancer just a week before I was. Someone who can relate to the trials and emotions that this journey has and will bring.  Traci, I'm talking about you. Billy and I look forward to having lunch next week with you and Brian.

Today I would ask that my blog followers pray for Brian and Traci.  Traci has breast cancer and has undergone her 2nd round of chemotherapy.  She began losing her hair already and shaved it off this morning.  You can find her and her husband's story and encourage them today at:

My prayers are with you all today.

 "God will generously provide all you need.  Then you will always have everything you need and plenty left over to share with others. For God is the one who provides seed for the farmer and then bread to eat.  In the same way, he will provide and increase your resources and then produce a great harvest of generosity in you.  You will be enriched in every way so that you can always be generous.  And when we take your gifts to those who need them, they will thank God."

2 Cor.  9:8,10-11 NLT

Thursday, December 2, 2010

First Gynecology Radiology Oncology Appointment

Whew! That title is a mouthful isn't it?  I learned so much today at my appointment and am encouraged that we are finally getting closer to a treatment plan just a mere 17 days after I was told my diagnosis.  The key word here is "closer" because there are still so many steps before I can start treatment. 

This was my first visit with the radiologist and I was in very good spirits this morning even though I had way too little sleep last night.  My husband, Billy, dropped me off at the facility and immediately told me he didn't like the place already because they didn't clean their front doors.  I just love him for saying that because he made me laugh before I ever stepped inside.  My sister, Amy, went to this appointment with me while Billy had to go to class.  Although I know he hated to miss, he has gone back to college and is in the last couple weeks of this semester.

Amy and I walked in and went through what we thought were the correct doors to the right.  The lobby was full and there was a big pink Christmas tree covered in breast cancer pink ribbons and pinks decorative balls.  We quickly found we were in the wrong office and entered the office across the hall. This lobby was mostly empty but had a little tree covered in medicine bottles, snowflakes cut out of patient masks, radiation symbols, cards received from patients.  We were later told that the offices were having a contest on who could decorate the best Christmas tree themed around their particular business and patients. The tree representing me was a little sad, as was the table full of half finished puzzles. However, this was offset by the non-traditional pop-rock lobby music playing from a pitiful looking boom box on the corner table and the front desk receptionist who started bustin' a move to the rhythm.  This was just the first moment of comical relief during our visit.

After a long interview with the nurse answering questions like, "Do your eyes feel dry or hurt?", "Do you feel like you have arthritis anywhere?", we met Dr Smith. The good Dr rolled his chair right up until his toes met mine and leaned forward to give me his full attention.  He had me walk through my symptoms and what brought me to this place; he asked questions and listened intently.  He then explained my treatment plan.

Although they were able to remove some of the cancer in surgery 3 weeks ago, they could not remove it all because of where it is located.  So far, all doctors agree that this cancer cannot be operated on without really damaging other organs/parts of the body.  The Dr explained that my treatment will be unique because of the rare type of cancer, but also because of the difficult location.  He suggests we begin with External Beam Radiation (EBR) hitting a broad area 360 degrees around the pelvis.  There is concern that there could be very small cancer cells spread in other areas that need treated although they were too small to see in the PET Scan.  If we were to use a Proton therapy, Tomo therapy or even IMRT we would limit where the radiation treats the cancer and for my case this is not the desired method.  I will have this External Beam Radiation (EBR) locally five days per week for up to 5-6 weeks.  This treatment is quick and should only take 20 minutes of my time.  They will add weekly appointments with Dr Smith and his nurse to monitor my side effects and treatment effectiveness once per week.  I will have chemo with this, but will meet with Dr Shafer to discuss this next week.  Once this EBR treatment ends I will immediately begin a secondary radiation treatment called Interstitial Brachytherapy, which was explained to me as follows.  I will be admitted to the hospital and put to sleep under anesthesia.  The radiologist will insert about 20 needles directly into the remaining cancer.  Small tubes pumping radiation will be connected to these needles so they can release the radiation into the cancer and some surrounding tissue.  Once this is over they'll remove the needles, I'll wake up and get to go home.   They will do this procedure anywhere from 1 -3 times.  This is the next best treatment to surgery based on what I've read tonight on this site an others.  This treatment cannot be done locally where I live.

My exam today showed I am mostly healed from my surgery and am ready to start therapy as soon as we can get through these next appointments to ensure we are on the right track. 

Upcoming appointments are:

Next week I will go to the OU Cancer Institute to meet with a Gyn Oncologist.  This is to get a second opinion on treatment plan and to reaffirm that surgery is not the best option right now. 

While at OU I will also meet with a Gyn Radiology Oncologist who specializes in Interstitial Brachytherapy.  This is to get a second opinion on radiation treatment plans, to gain guidance on the Brachytherapy and to determine if there is a way to plant "seeds" into the cancer.  These "seeds" show up in an x-ray prior to the External Beam Radiation being done each day so that the Dr Smith's team knows exactly where the cancer is each day to treat with the most precise angles.  We will have a conference call with Dr Smith while there and if he or I are not comfortable with this doctor and her procedures I will be sent to MD Anderson for this Brachytherapy treatment.

Thursday 12/09 I will meet with Dr Shafer locally.  Dr Shafer is a Medical Oncologist that will provide my chemotherapy treatment plan. 

Friday 12/13 I have a TBD appointment to get another CAT scan necessary before I begin EBR locally.

 Dr Smith showed us my PET scan and CAT scan images, which were amazing to Amy and I.  How they know what they are looking at is impressive.  With this I learned one extra thing about myself that left us laughing as we walked back out those dirty front doors. 

I have BROWN FAT!  I said, "and what does that mean?".  To my surprise the doctor said it means I need to talk to my mama because I am not 100% Caucasian after all!  He went to far when he asked if I wondered why I don't look like my sister.  Those of you that know Amy and I know there's no wondering if we are sisters! So perhaps you know what this means, but I didn't.  Apparently brown fat is what we non-medical folk call baby fat.  He said all babies are born with an extra layer of brown fat to keep them warm and then they lose it as they grow older.  Well, the very top of my shoulders and the back of my neck still carry some baby fat and it glows on a PET Scan bright as the North Star.  Its not my fault I carry a few extra pounds...I've just never lost all my baby fat.  That's my new excuse and I'm sticking to it! 

Night all.

Wednesday, December 1, 2010


The last two days have been so interesting.  I've felt really good physically and mentally.   I have felt more at peace, more joyful, more myself.  For those of you that know me, you know that this time of the year is especially hectic being a sales person in the toy industry.  In a normal year every phone call or project I get on a day like this is about writing orders because we are running out of product, correcting orders, shutting off orders because a product is overstocked, planning next August's items to be carried in store and what we will put on rollback and what we will have on a pallet or in an ad delivered to your door step.  Its hectic and there is a lot of pressure to hit the number we committed to Wall Street.  Well, my days now are full of all of these things, but interwoven throughout the day I get a call reminding me what I need to bring to my doctor appointment tomorrow.  I get a call saying my medical records have been faxed to another doctor.  I get a call setting up another doctor appointment for next week.  I call to make sure the medical records were received and try to schedule an appointment with a new doctor.  I call to set up my kid's dentist appointments.  I make a note that my daughter needs to take snacks to school with her on Friday and that my son is getting out early due to a championship football game for our town.  My husband comes in and asks what he can help me with and I dump on him everything in my head and I know its too much.  I begin to think about what we should have for dinner and if I need to lay any meat out to thaw.  I get wonderful texts and calls and e-mails and blog posts encouraging me and supporting me through it all.  Its a typical hectic day in my life as a working mom and wife, but not so typical at all. 

It feels good to have some "normal", but feels wrong at the same time.  I realize this may seem confusing to some, but to those that have gone through real trials I think it will make sense.  Its like I am sitting there completely enjoying "normal" and then for just a few seconds something makes my mind remember that things are not really normal.  Not for me; not right now.  I know they will be again and my mind can go back to the moment...this single moment that I don't want to miss.  I don't want to take for granted a good cup of tea with my family member, a chat with a friend, a hug from my husband, a ever long story told by my kids.  I am so thankful for these moments and blessed by so many who care and love me.  Today in the middle of chaos I find I am grateful.

Grateful for:
  • Our God that never leaves me and cares about my every need.
  • My Husband who is fully committed to me and would carry my illness himself if he were able.
  • My parents who raised me in a Christian home so that I know where to turn during a time like this.
  • Our family who is willing to care for me in any way....researching, buying groceries, bringing dinner, running errands, driving to doctor visits, being "listeners", etc
  • Our friends who have shown such compassion and support and been prayer warriors on my behalf.
  • My doctors and nurses that have communicated to me with sensitivity and honesty.
  • My employer that has been so patient and understanding and my colleagues that have picked up a lot of extra work during an already busy time.
  • My nanny who has been so flexible to help with our kids and give me peace of mind that they are in good care.
  • Those of you that have supported my husband and our families as they deal with this news as well.
The list goes on and on, but I feel grateful for you in the midst of chaos.  Thank you for loving me well.

"I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done.  I will be filled with joy because of you.  I will sing praises to your name." Psalms 9:1-2