First day at OU Cancer Institute

(If you have checked in here to sign in for the prayer challenge please check the post below this one)

Today I (Amy) was able to go down to Oklahoma City to join Billy and Kristi at her first day at the OU Cancer Institute.  Overall we are thanking God because it is very apparent He held Kristi in each and every encounter of her day. As Katy stated in a previous post - a picture is worth a thousand words! So I thought I would update you with pictures of her day. They are not top quality as I took them with my phone - forgot the real camera!

Kristi started her day off by arriving at 5:30 and being taken back to the outpatient center by 7:00am to get her ovaries removed and the 10 catheter needles put in place.  The doctor felt like every thing looked really good and that there was no scar tissue or obstructions in the way of the interstitial brachy radiation from working

posed and ready for her surgical procedures

After these procedures were completed Kristi was then taken in for a CT scan to make sure all the needles were in the correct place.... this took much longer than anticipated - we are not sure why but the doctors both did great at calling Billy and keeping us up to speed. Therefore we sat in the waiting room and Kristi hung out in Recovery or on the CT Scan table!  By 12:45 we were able to join her in her room.

Here is Kristi in her corner room! We praised God for the Window!! 

We were able to be with Kristi for about an hour before Billy and I were ushered out of her room while the physicist and Doctor came in to insert the radiation seeds into her catheter needles. This was where we had to give hugs and say goodbye because when we returned we would only be allowed to stand in the door way. During our time with her she was very alert and said her pain levels were at a 4 on a scale from 1 to 10. The doctor said her pain levels should only get better from here on out. 

Radiation seeds are now in place and killing the cancer cells! These partitions were rolled in as protective  walls that contained lead to keep the radiation from seeping out of the room.

When we returned the nurse, Anna, and George the radiation technician were taking measurements of how much radiation was being released into the air from different points within Kristi's room as well as at the door.
Such an odd thing! At this point it was quite surreal to think they had to monitor these levels and note the amounts on the door yet Kristi is going to lay in there with it for 47 hours (recently told this would be 49 so praising God for 2 less hours in quarantine).

I know you can't read this well but it notes the radiation levels at different points of interest plus states the rules that visitors can only stand in the door way for 15 minutes per day and that the nurse can only be in the room for 15 minutes per day.

Other signs hung on her door along with a sheet of paper that explains interstitial  brachy radiation

Here will be Billy's perch for visiting. Fortunately the bed really is not too far from the door. Once again praising God for 15 minute daily visits.

We were able to pray in her room while we had just a few minutes without nurses, doctors or technicians. Scripture says we can approach His throne with boldness - and we boldly asked for healing, for God's presence to be real and alive, for peace of mind and for Gods glory to shine through.  I thank each and everyone of you who wrote such heartfelt prayers, verses and words of encouragement on the previous blog. Thank you for sharing an hour in your next few days to pray for her. In reading your comments they brought such delight to my heart and I know they will for her too. She is able to have access to her blog while in her "private" room so please continue to post as you feel led. What a blessing to look at a time and Know someone is praying on your behalf. Amazing!! I love that though we may be separated we are still ONE in the Name of Jesus and can Call out to Him on her behalf.

As you pray , please add to your prayers, that her pain medicine is working. They hooked Kristi up to pain meds through an epidural and a morphine drip. Not long after Billy and I left she did send a text saying she wasn't sure the epidural was working because she was having pain in her lower back on the right side. It is critical that they manage her pain. They did say she was at her worst and the pain levels would get less the longer she's in there which is encouraging - If the pain medications are effective! Also pray against long term side effects of being exposed to the radiation.

Thank you for joining us in prayer

Philippians 4:4-9 

 Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

  Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.  Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

Prayer Challenge

Hi friends and family -- This is Amy, Kristi's sister. I know we all long to "do" something that is helpful for Kristi during her hours of being quarantined while receiving the interstitial radiation and I believe that we can by standing in the gap with prayer. Early on in Kristi's treatment I went with her to one of her external radiation appointments and as she left me in the waiting room to walk back and receive her radiation I was flooded with many helpless feelings but also this raw awareness that I could not take this cup from her. This last Sunday as our preacher was teaching through the book of John he read the following passage...
John 18:11b  Shall I not drink the cup the father has for me?
Previously to this scene Jesus had been praying in the Garden of Gethsemane "My father if it is at all possible, may this cup be taken from me. Yet not as I will, but as you will" Matt 26:39 and then again in verse 42 He says "My father if it is not possible for this cup to be taken away unless I drink it, may your will be done!"


God has not chosen to take this cup away from Kristi either but I believe we can go to battle with her and along side our heavenly Father who does all things with a purpose. Let's join together to strengthen her in prayer so she knows she is NOT quarantined in that room alone - May Jesus' presence be very alive and real.

So here is the challenge - pick an hour to pray for Kristi and post your time in the comments area.. To do this go to the bottom of the comments where it says post a comment and under "comment as" click on anonymous if you do not have another type of account.  Then make your post and type in the coded word as directed and it will post your comment.  Lets see if we can stand in the gap and cover her in prayer around the clock.   (i.e. If you pick 3:00pm that means you will pray for her as many times as you want during that hour on Tuesday, Wednesday, and Thursday.)  I believe we can get most the hours taken b/c I know she has loved ones over seas praying for her too that are awake when we are sleeping! She will be so encouraged when she returns home to find out all who have committed to pray for her. Thanks for taking the challenge!

Dear Heavenly Father - I know your love for Kristi far outreaches our own, I know you pray for her and it is your healing hand that is going to heal her body of all cancer cells. Tonight I know as we collectively come together you will hear the prayers of the saints who are crying out on her behalf. I thank you that our hope is in you alone and not in circumstances. I even thank you for this "new" technology that is being used to heal Kristi's body. I thank you for doctors and pray you give them wisdom beyond their own intellect. We pray for peace of mind and rest while she "waits" in that room for the healing to take place. We pray that Satan's words of discouragement and defeat would fall on deaf ears and for a hedge of protection to surround her room and her mind. I pray that you would remove all fears and give Your peace that passeth understanding to Kristi as well as  Billy, the kids and all extended family members. You are a Good and Knowing God and it is in You we place our Trust and our Hope and we know that this cup you have chosen for Kristi is not in vain -  we know that your Glory will shine through brightly and may our lives never be the same - may we all be changed by what you've taught us along the journey - its in Your gracious name I pray all these things. Amen.

Quiet Moments

Prior to cancer there were moments that I just wished with all my might that my life could slow down; that I would have that quiet moment to focus on whatever I wanted.  A pinch of time when my family, my job, the demands of life didn't need me and I could soak in the silence.  Now, I find the busyness of life such a blessing.  It allows my mind to be so preoccupied that I can't focus on the unknowns.
Almost two weeks ago I awoke in the night and as I lay in bed my mind began to wonder about this journey  I'm on; questioning if the treatment is right.  How do they really know when only 40 women will have it this year in the U.S?  If my cancer is 5% of all Vaginal cancers then only 800 women get Vaginal cancer in the entire U.S every year.  What if this treatment doesn't work?  What would the next step be?  A radical hysteroctomy, which I do not want to do as they take part of your colon and your bladder.  And even if I had to do this, sometimes people aren't candidates for various reasons.  Then what?  I begin to think about reoccurrance and how the doctors say we can only radiate once so we need to get it the first time.  Well what if they don't?  What if I have a reoccurance and I'm not a candidate for a radical hysterectomy?  What if they don't catch it in time because there is no simple test for this cancer and it spreads to various other parts of the body.  What if.......

That morning I woke up with my stomach in knots not sure how to face the day.  I was overcome by sheer terror of this disease and all that we don't know about it and about my future.  I was thinking about other families that have been impacted by cancer and I felt the need to spray paint I HATE CANCER on the wall somewhere.  I told Billy I wanted to take my faith board and stomp on it.  I felt afraid and small, which in turn made me angry.  I sat down and forced myself to read my bible.  I began reading in Mark 10, which my sister's friend had talked about previously.  Once I began to read, I found another scripture to turn to, and another and another. Mark 10:51-52 says '"My rabbi", the blind mand said, " I want to see!" and Jesus told him, " Go, for your fiath has healed you."  Instantly the man would see and he followed Jesus down the road.'  Luke 5: 12-13 says, '"Lord," he said, " if you are willing, you can heal me and make me clean."  Jesus reached out and touched him.  " I am willing", he said.  "Be healed."'  Matt 8:5-7 says,  'A Roman officer came and pleaded with him, "Lord, my young servant lies in bed, paralyzed and in terrible pain." Jesus said "I will come and heal him."'  In this verse the officer declared his faith by saying Jesus didn't have to come, but just say the words.'  Matt.  8:13 goes on to say, 'Then Jesus said to the Roman officer, "Go back home.  Because you believed it has happened."  And the young servant was healed that same hour.' 

In Matthewe 16 Jesus cast out demons and evil spirits and in all the versus above he healed the blind, the unclean who had leprosy, the sick and hurting. It reminded me of when I told my doctor that my God was really big and suddenly I felt my fear turn to sadness.  Why is it so easy to forget who has authority over our life?  As a child I remember the analogy that prayer and faith is like writing your request on paper, placing it inside a box and forever handing it to God.  I know I'm not the only one that joked about the box going to God over and over with the same request because we kept taking the box back from him.  I realized that I was forgetting that my God is really big and that He has authority not only over my life, but over all sickness, disease and evil on this earth. 

I was also reminded that God had good intentions for my life.  In John 10:10 Jesus talks to his disciples about being the good shepherd and He says, "My purpose is to give them a rich and satisfying life."  In Rom 8:31 you find " What then shall we say to these things?  If God is for us, who can be against us?"  In a book I'm reading there is a quote that puts these two versus in perspective for me.....If you could hear the Lord praying for you in the next room, you would not fear a thousand enemies!  Heb 7:25 says that God prays for me and now I know that He is "for me" and he wanst to "give me a rich and satisfying life."  I cannot imagine what He is asking on my behalf, but I don't believe it includes sheer terror of the path He's chosen to give me.

I am reminded of this tonight, because the busyness of life is not present and I am once again alone with my thoughts for just a little while.  Immediately my mind begins to wonder about my treatment next week.  I begin to walk through the risks involved with this procedure; I wonder how I'm going to handle the discomfort and the long days alone.  As soon as I think I'll give way to my wandering thoughts I remember that I have a really big God who has authority over my personal cancer journey.  He wouldn't want me to waste my quiet moment being afraid.

In John 9 Jesus heals the blind man and the disciples ask him why the man was born blind to begin with.  Jesus answers in verse 3 saying, "It was not because of his sins or his parents sins.  This happened so the power of God could be seen in him."  A sweet man I've not even met told me that my journey reminds him of the children's song This Little Light of Mine. He is so right! There is no need to wonder why this happened to me?  I know that no matter what the future holds my purpose on earth is to glorify God just like this sweet childhood song reminds us.

So here's a little different version I heard on the radio the other day.  It seems just perfect for my quiet moment right now.
http://www.youtube.com/watch?v=93JxrtFUgrk&feature=related

Time to go to OU

After several calls with my gyn-onc and rad-onc at the OU Cancer Institute we've finally got some answers. 

They did compare my CT scan with the PET scan from before treatment and the great news is that the mass is gone!  The treatment is working thus far and certainly I need to take a minute to celebrate this news!  However, there is still cancer in the vaginal wall on my right side.  The doctor first called to say there was still an "enhanced ridge", which after hanging up I freaked out about.  In my mind, I thought that sounded like the mass was still there and if that was the case how could the treatment be working?  I called the rad-onc back to ask more questions and learned that what they see now is a thickening of the vaginal wall where the mass was previously growing.  There are abnormailities present in the glands and tissue of that wall, which tells them that there is still cancer there.  Regardless if there is or is not, the next step for the highest cure rate and the lowest reoccurance rate is still clear.  I have to go forward with the Interstitial Brachy Therapy. The wall is over .5mm which means I am not a candidate for the cylinder type internal radiation.  I've written about Brachy Therapy before, but here is my specific plan.

Monday; 3/21 -  Arrive for pre-op at OUCI (OU Cancer Institute) - Be on a liquid diet all day.
Tuesday:  3/22 - Arrive at pre-op at 5:30 am; surgery begins at 7:00 am where they will place 20 needles into the vaginal wall while I am under anesthetics.  Once I wake up they will take me for x-rays and a CT scan to ensure the needles are placed exactly where they need them.  Next, they will take me to a quarantined radiation suite, as they call it, and the rad-onc will attach small cathedar size tubes that will begin to feed radiation seeds directly to the vaginal wall.  They will give me a cathedar and some meds to stop my bowels.  I will continue a liquid and soft foods (like Jello) diet for 49+ hours once I'm radioactive.
Wednesday:  3/23 - Continue to lay in the bed flat on my back radioactive.  I will have a self-given morphine drip most likely through an epidural.  Nurses will come in to check vitals and bring liquid meals.  The rad-onc will come twice per day to check on me and ensure there is no infection. My husband will be allowed to come stand at the open doorway once per day for 10 minutes. Noone will stay in the room for more than 10 minutes at a time so that they are not exposed to the radiation.
Thursday:  3/24 - Late afternoon when 49+ hours are up the rad-onc will come in and remove the needles and the cathedar.  I will be allowed to get up and shower and ensure bowels are working again. 
Friday:  3/25 - I'll be dismissed and we'll begin the long drive home

The main decision I still have to make is whether to remove my ovaries at the same time they put the needles in for Interstital.  I mentioned that the gyn-onc drew blood to test my hormone levels and the result gave me a result of 57 (FSH), whereas the range for post-menopause is 25 - 134.  There are times during a given month that a pre-menopausal woman's hormone reading will cross over into the post-menopause range, but a 57 is low enough this is not of concern.  We can safely say my ovaries on not functioning and releasing any estrogen.  This is a good thing based on my particular situation, but there is a 25% chance that they can repair themselves and begin functioning at some level in the future.  For my own peace of mind I need to have them out and to have a surgery more than 6 weeks after radiation is risky. The organs and tissues in the radiation path are not only fragile, but scar adhesions begin to form between the organs and this causes high risks.  I can either go through both surgeries at once or I can have two surgeries over a 3 week period.  I'm really leaning toward getting both done at once as of now.

A lot of information here I know, but want to keep many of you following closely up to date. 

Please pray for peace of mind leading into treatment and during treatment; not only for myself, but for my husband and children, family and friends.  Next week is Spring Break for my kids and I'll be in the hospital for four days where they are not allowed to come visit me.  I believe that this is necessary for my long term well-being and I also believe that I won't really be alone in that room.  There is One that never leaves me! 

Best Day I've had

Its been 18 days without chemo and 13 days without radiation and today was by far the best day I've had in a very long time. Physically some energy is coming back and today that lasted into the evening.  My mind is clearer allowing me to work more.  My pain is becoming less and less, which is helpful in more ways than you know.  I am getting headaches in the late evening and waking up with horrible headaches in the morning for some reason.  My strength is a far cry from where it should be; its noticeable most when I pick up my little 16 month old nephew and I can feel my legs weaken beneath me.  Overall though, I'm feeling so much better.  Thank you to so many of you who have reached out to see how I'm doing. 

I did receive a call from the doctor saying that my MRI showed there is still cancer, but it has shrunk.  The actual mass that was seen previously is gone, but the vaginal wall shows what they are calling an "enhanced ridge" which means there are still abnormalities in the tissue and glands and the wall is thicker than it should be.  Because of this the rad-onc does not believe I am a candidate for the cylinder internal radiation.  I'll have to do the interstitial brachy therapy.  However, they are still presenting my case to the tumor board tomorrow and will discuss how many days the procedure will take and if I can have my ovaries removed at the same time I'm under anesthetic for them to put the needles in. They'll also choose a date for the week of the 14th or the 21st.  I've asked them for next week if their schedules will allow it.  I assume I'll know more details on Friday morning. 

Good night all....

OU Cancer Institute Appointment Update

After four hours of driving yesterday morning Billy and I arrived at the OU Cancer Institutee in Oklahoma City.  I had an appointment at 12:30 for an MRI.  This scan was to be used as a preparation tool for the Interstitial Brachy Therapy (internal radiation) that I am to have done as the next part of my treatment plan.  By 12:45 I had changed into a gown and had a large plastic piece strapped over my abdomen and to the table I laid on.  I had contrast material put in my body to help decipher the scans better and then they put the table and myself inside the closed tube to be scanned.  Funny thing is that they gave me some headphones to listen to music while I lay there for the next 90 minutes, but there is no way you can hear that music.  If you've ever had an MRI you know those machines make a bunch of loud beeps and buzzes the entire time it scans and the tech's voice comes through the headphones loudly to tell you what is happening and when to breath or not breath.  It was a long process that I realized ended at 2:15 when I was supposed to be to a doctor appointment at 1:00 and another at 2:30.  The great news is that they work really well together there and everyone adapted to have us seen by both doctors and finished a little after 5 pm. 

I saw the radiation oncologist (Rad-Onc) first.  She specializes in Interstitial Brachy Therapy and although she needs much more time to really study my scans she believes I've had a good response from the treatments so far which has caused the vaginal wall to be less thick.  This causes some concern that there isn't enough strong tissue for the 20 needles required in Interstitial to hold on to so she is questioning whether we should do a cylinder treatment instead.  I don't know a whole lot about the cylinder treatment, but it is possible that I wouldn't have to spend the night quarantined with this type of treatment.  I tried not to get my hopes up as I am mentally prepared at this point to do the Interstitial and be quarantined for 72 hours if needed.

The next appointment was with the gynecology oncologist (Gyn-Onc).  She had not had a chance to study the scans yet, but based on her exam she believes there is enough tissue to do the Interstitial.  So, we have a debate here.  She recommended that her and the Rad-Onc take my case to the tumor board to be reviewed by all 9 Gyn-Oncs and the rest of the team.  Again, I heard that my case is not common and the more heads around it the better.  The tumor board will meet on Thursday, 3/10 so I won't hear anything until after that.  However, its possible that they will start the treatment of choice on Monday 3/14.

The Gyn-Onc also discussed the removal of my ovaries and although she said she would remove them if it was her, she also said she has lost the human side of this and is more focused on the highest cure rate and the lowest recurrence rate causing her to go to the extremes at times.  She did suggest that they draw blood for a hormone test to see if I am producing estrogen at all right now because my ovaries were in the route of radiation and I've had symptoms of menopause already.  The reason they would want to remove the ovaries is because the stain that was done on the removed lesion came back as 74% estrogen cell positive.  This means this is a hormonally driven cancer.  In breast cancer patients they would remove the ovaries if the test came back 10% positive, but of course they have no statistic for my cancer so it is my decision.  I agreed to do the hormone test and we'll hear back in 7 - 10 days to help make this decision easier.

It was a long day with very few real decisions or a concrete plans at the end of it.  However, I know there were so many prayers lifted up for me because everything went much smoother than expected.  I started to feel better in the afternoon with my headache, energy and stomach.  It was still a physically painful day and exhausting process, but I had it in my mind it would be much worse than it was...so thank you.  We have a God that hears the prayers of many and cares.  That is such a comfort to me.

Here are some verses I said over and over in my mind yesterday.

"Be strong and courageous.  Do not fear or be in dread of them, for it is the Lord your God who goes with you.  He will not leave you or forsake you."  Deut 31:6

"For I know the plans I have for you, declares the Lord, Plans to prosper you and not to harm you; plans to give you hope and a future".  Jer 29:11

It was so encouraging to me to know that my God was with me always and that he doesn't have plans to harm me, but wants to give me HOPE and a FUTURE!  He wants that for you too and I hope you are encouraged by that as well!

108 Days

Today marks 108 days since I sat in the doctor's office and heard the words......you have cancer.  In some ways it feels like just yesterday, but in many it feels like forever ago. 

The days of time stealers are over.  I added up all the time for driving and appointments over a week during treatment and we've been spending 25 hours per week driving and getting treatment.  That is a lot of time that my husband and family has given to me!  Thank you so much for your sacrifice. 

Today Billy and I are driving to the OU Cancer Institute so that I can have an MRI and see the Rad-Onc and Gyn_Onc that will oversee my Interstitial Brachy Radiation.  I am not feeling good today as I worked for 8 hours yesterday at the office and overdid it some while my boss was in town and projects were due.  Today my head is throbbing, my body is tired, I'm weak and shaky.  The side effects from radiation has caused irritation to my bladder and colon.  Its also caused blistering on the skin.  The one thing I am celebrating is that I have not had to take an anti-nausea pill since yesterday morning.  It has been 10 days since my last chemo and I'm hoping the side effects of that are wearing off. 

Please pray for safe travel and that my doctor visits go as smoothly as possible today.  I better run...Billy has started the car.