Wednesday, January 31, 2007

No firm decision needs to be made

Well, the verdict is that the MRI is scheduled for Friday, March 2 in the morning. We are then to see Dr. Linette on Wednesday, March 7 to discuss the results. We do not need to make a decision about starting Temodar till at that time. He stated that it is highly unlikely that any growth would have occured by this next MRI. If it does we will know the severity of this tumor.

Our questions about Temodar were answered. We asked specifically if it would be just as effective to do the "wait and see if anything comes back" approach versus taking the Temodar right after the MRI. He agreed with us that the clinical studies that were done on my type of tumor were solely for the recurrent cancer patients. So in theory yes, the Temodar would work when & if the cancer returns.

Patients with my type of cancer that take the Temodar usually on average have the cancer return in about 3 to 4 years. Dr. Linette said that it was very positive that I had a great surgery to remove what Dr. Forget could see. Completing radiation is also to my benefit.

With or without chemo MRI's will be every 3 months or sooner if I exhibit any clinical neurologically signs. I will also have blood work every 3 months when I check in with Dr. Linette. If we do take the Temodar I will need blood work every month to monitor my bone marrow and many other things.

All in all Dave and I are pleased to not make a firm decision till after the MRI is complete. We are obviously praying that no signs of growth of any kind will show up on Friday, March 2.

7 more radiation treatments to go!

Tuesday, January 30, 2007

Sawdust and skulldust?

Today was a doozie of a day emotionally. I woke up melancholy to start my day. I am just a little disturbed by the redness above my eyebrow. It is not very noticeable to others. My frustration was that the hair loss was enough to tackle emotionally but now I get to have a good sunburn as well. God will be with me with a radiated sunburn as well as the hair loss. This is temporary.

My Bible study group this morning prayed specifically for my trial. I am thankful for them. I actually was discouraging them to pray for just me during the prayer time. I was a little uncomfortable to take all the time thinking that others have important issues going on as well. I was sobbing during most of the prayer. A friend Laura C. was out in the hallway after the prayer time. Thanks to her for allowing me to cry on her shoulder.

Dr. Simpson, radiation oncologist was able to see me today instead of tomorrow since it will already be a packed morning for me. I had some concerns regarding the redness, a nobby bump above my eye and the benefit of 30 treatments over 25. Yes, I tested the waters to see if I could even possibly stop this Friday. Of course, no lengthy discussion was had on that last issue. As for the redness he wasn't concerned. The nobby bump turns out to be saw dust of sorts. Dr. Simpson explained that during surgery when the saw was cutting my skull bone dust can scatter. The bump under the skin is most likely a skull dust of sorts. I am sure there is a cool medical term for it he just didn't give one. He just said "You know what sawdust is?" My comment was "Of course, I grew up on a farm." Who did he think I was some ding dong of a patient? Dr. Simpson is loosening up some. I was a little set back by him in the beginning. I jokingly told some that he is like a Goliath to me. Looking back he is not that bad just a little stiff. There is a softy behind that white lab coat. It is doing him some good to have me as a patient. A little lively discussion about things other than cancer are good. If I do say so myself.

As you know tomorrow is the doctor appointment with Dr. Linette my oncologist at 10:30. Dave & I should have a good grasp on many facets of the chemo concerns we have. Pray as the Lord leads. 9:30 is radiation then bloodwork. Please pray that a date will be set for the next MRI.

I was hoping to spend some time with Joe tomorrow. I guess it will have to wait until Thursday. The lab at Barnes is a little on the slow side. Not real prompt. I will have to go directly to the lab after RT. He told me on Monday that he didn't have such a great Sunday while with family. He stated he is a little depressed. I was sorry to hear that. I asked him about his eye and burns. He wasn't as concerned about them. Thankfully he is eating somewhat better than in the past week.

I better get to bed. My skulldust head needs some rest. - Kate

Monday, January 29, 2007

Go back to the way she was

Today I was tired after the radiation. After my grocery run to Whole Foods I came home and took a 1 1/2 hour nap while my sister played with Stuart. I also have had an upset stomach.

Tonight there is some redness above my right eyebrow. It is oval grid looking just like the plastic mask that is place upon me during radiation.

While reading this evening Carter was troubled by my hair loss. At night I usually tack up my hair to put on the aquaphor. A few days earlier both Cole and Carter were praying with Dave at bedtime. They asked "That mommy would get better and go back to the way she was before."
I have been crying tonight. This is an adjustment for all of us.

Pray that my redness does not worsen, the boys hearts and for my emotions. The next 9 treatments seem like an eternity away. I want to stop!

A little discouraged - Kate

Saturday, January 27, 2007

Refined to the 10th degree

Earlier this week when looking for new headbands for my hair or lack of at a teenie bopper store, I had to try on the bands prior to the purchase. (Headbands are the "in" thing so I have been told. I have been going to the teenager stores in the mall to find them. The joke is that one clerk not long ago thought I was a college student. My mom and sister say that I mention that often. Hey why not, I am a 33 yo mom of 3 boys. A college student is looking good to me these days.) Anyway back to my story of a old mommy trying on headbands . . . I told the clerk sorry for "the bald head scar scare." She said it was Ok. Her mom had GBM brain cancer. I asked her how her mom is now. She said that she passed away. "I was sorry to hear that" was my response. Our conversation continued. After I asked permission to ask a personal question about her moms death she told me of how her body just shut down after a while and she was on hospice. Ok, that jolted me to think I might suffer a painful death in the near future. It was also a good reminder that any cancer brain or wherever can take over your whole body system. When I die, I want a quick death. Like I have any say in the matter. The more I think of it I don't know one person who would want to suffer a long painful death. I continue to struggle with the fact that as a young mom I do not want to leave this earth anytime soon. I love my life here on earth. I know that God loves my boys more than I could ever have it is just a difficult thought. I at one point I thought that I should possibly seek counsel on this. Dave and I discussed this at length on our Thursday eve date. The apostle Paul had a similar struggle of not leaving because his work was not done. Death is not natural. It wasn't the way God had intended. Knowing God is at work here and he is not done with me yet. I need to make the most of my time here NOW!

I have matured greatly over this ongoing trial. I didn't realize how immature I was in my faith and reliance on my holy God. It also has shown me that I really was living high on the hog latelywith no big concerns. I am convinced that not too many people in the United States truly know what suffering is. Some but not many. I also am thinking that my trial is not a huge suffering compared to other parts of the world. Prayer is so much more a part of my life. Scripture is alive. I have shared with you a little bit on the Daniel Bible study I am taking. Well, I only chose this study because of the video leader. Let me say I am being spanked with all the insight. Sorry, it is the only way I can best described my brokeness and how God is using this study to speak to me. Whoa, I have some maturing to do. I am listening that is for sure. Application, application, application. I am being refined to the 10th degree. I am sure there are more degrees to come. My bottom aka: heart & mind will be sore after this study is done. (you can laugh at this one!)

Every day I now have radiation at 9:30 am. On Tuesday it is at 1:15 pm.

Joe was discouraged during the later part of this week. His radiation burns are severe. His skin is raw. I ache to look at his burns. When bathing he can't even put a washcloth to it. Ouch! His shirt collar rubs on it to make it even worse. On a positive note, his eye looks good. As of Friday, he cannot open the right eye but whatever was placed below the eye is healing well. A little blood and bruising is all that I see. He has been eating more as well. Our conversation has been good. He finishes radiation I think 2 days before me. We both are counting down. I have 10 treatments left. I think he only has 8. I am glad he is my friend.

Thank you from my heart for praying for us. Dave and I would not be where we are without the faithful prayers of many. I know I have said it many times in the past few posts but it is worth repeating . . . pray for the 10:30 am oncologist visit Wednesday the 31st. I will have blood drawn prior to the visit. You and I both know this is a vitally important visit. It will shed some light on whether or not chemo should be taken 3 weeks after radiation. Dave and I have many questions to ask Dr. Linette. Please pray as the Lord leads. We can only ask that the Lord would guide this step as He has been so faithful to do thus far. Dave and I will hope to have some quiet time after Wednesday to make a sound decision. My mom is encouraging us to go away for the night at a hotel to pray and spend time together.

Have a great day! I am glad you are my friend too.

Friday, January 26, 2007


Dave and I have had a nice slow time lately. It is a lull in all the cancer rush. We were able to have a date last night to discuss all that has happened and is to come. We both concur that we have a peace. We will be meeting with Dr. Linette on Wednesday the 31st to discuss our options after the radiation. We see two options at this time.

1. Take the chemo after a 3 week break along with the natural compounds for an extended time.
2. Do a "wait and see" approach after every MRI along with taking the natural compunds. If the cancer is returning then start the chemo at that point. There will be much discussion with this on Wednesday. We want to know the effectiveness of the chemo a later date versus directly after the radiation. Hopefully there is some research in regards to this.

There have not been as many blogs due to the nice slow time. It was a nice needed break from all the rush decisions. I guess you could say - No news is great news!


Wednesday, January 24, 2007

12 Radiation treatments to go

I only have 12 radiation treatments to go! I am past the halfway point. February 9 is looking better and better each day. My head is a little sore, tender and has a burning sensation but it doesn't look red on the actual skin thankfully. I think the aquaphor ointment and being well hydrated is helping. I am taking more naps and sleeping well at night. I have a hard time getting out of bed in the morning. I think the radiation is the culprit. I am normally a morning person.

I heard from another Hope Lodge patient that Joe's eye surgery was good. He slept well last night and was up eating breakfast this morning. I was relieved to hear this news and wanted to pass it along to you. I hope to see him tomorrow after my treatment at 9:30.

Keep treckin' along

Tuesday, January 23, 2007

2,000 hits a week

Every week there have been about 2,000 hits on the blog. Wow! If even half of them are praying bloggers that is great to say the least.

As I have contemplated all that has been and is happening since late October I am in awe. Almost cloudy at times. Words don't even come to me to be able to explain it to you.

Monday I was able to have some time with Joe while he and I were waiting for our treatments. We were discussing the job of parenthood. I was laughing at all the dad training responsibilities he spoke of. One in particular was when he sent one of his disobedient sons to his room. Later that evening Joe noticed that the son was climbing out of his window and down a tree to escape. Joe said nothing to his son. He went out later to saw down the tree. He fixed that! Later he said that the one son wasn't the only one using the tree as a way to leave the home. I told him "I guess you killed two birds with one stone." There was another story of his daughter and her car being taken away. He took the keys along with the wires to the car. Her boyfriend knew how to hot wire a car. Long story but quite amusing. Joe's eye surgery was this afternoon. He should be back at the Hope Lodge by 5 pm. I will not see him tomorrow at treatment because my treatment is at 8:45 am. Ouch! I will have to get up early to brave the lovely traffic.

Hey here is an added praise to the previous blog. . . Stuart is now officially going potty in the big boy potty! Yes, that is very exciting. Loud clapping on the toilet is quite fun for him.

Again do pray for the upcoming doctors appointment next Wednesday the 31st with Dr. Linette. We will be discussing my options for treatment after the radiation.


Friday, January 19, 2007

His faithfulness in answered prayer

Praise be to the name of God for ever and ever;
wisdom and power are his.
He changes times and seasons;
he sets up kings and deposes them.
He gives wisdom to the wise and knowledge to the discerning.
He reveals deep and hidden things;
he knows what lies in darkness,
and light dwells with him.
I thank and praise you O God of my fathers:
You have given me wisdom and power,
you have made known to me what we asked of you,
You have made known to us the dream of the king.
Daniel 2:20-23
After doing my Bible study on Daniel today I wanted to share with you as many praises that have come forth with this journey. As Daniel 2 describes, he is asking for mercy from God of heaven to reaveal the mystery of Nebuchadnezzars dream. Daniel along with Hananiah, Mishael, Azariah (also known as Shadrach, Meshach and Abednego) prayed earnestly for mercy to reveal the mystery. That night after prayer the dream was revealed to Daniel. He immediately took time to praise God. The above verse tells of his praise. It shows Gods faithfulness. I have been lacking in praising God for answered prayer. Please join with me in this joy. Blog any praises you can think of. It is time for rejoicing even now!
  1. Pre op - laughter prior to surgery - thank you Gene Moniz
  2. The blackBerry - updates with scripture prior to pre op - Thanks to Dave's employer
  3. Dr. Forget with his skilled hand - even MD Anderson Dr. Yung said it looked great on the MRI scan!
  4. surgery - no severe side effects
  5. surgery - lived through it
  6. surgery - no blood clotting issues
  7. great ICU staff at St. Johns especially Amy (cute stack haircut) (even with all the drugs I remember her haircut she was oh so kind and knew what to do - so on the ball . . . Many Thanks!)
  8. post op - healed very quickly no infection
  9. post op - drove almost 2 weeks later Wow! That is amazing after brain surgery.
  10. A loyal husband, Dave - researches tirelessy and loves unconditionally
  11. No flu or any sickness in the family - only a slight cold for Stuart in November
  12. Safety for Dave & I and the boys while we were in Houston, TX
  13. Radiation - no steroids or burns yet
  14. My hair loss is not my main focus today
  15. Not on chemo with the RT and it was OK'd by both oncologist and radiologist doctors
  16. Other Siteman patients especially Joe
  17. staff at radiology - therapists, Amy & Jessica - receptionist, Stefanie & Dot - nurse Deb & parking attendants, yes you with the braided hair
  18. Health insurance
  19. Dave's employment
  20. This blog - thanks to Andy King
  21. Friendship
  22. Nutritional biochemist, Dr. C. for taking time to explain the natural compounds on a molecular level
  23. My heart change and continual maturity in Christ
  24. God is the same yesterday, today and forever
  25. God's providence is intentional and purposeful
  26. Fear is lessened - it is becoming easier to trust
  27. I have joy!
  28. My mom, Sandy aka: Grams to bloggers! - for cooking, cleaning, organizing, watching boys, listening and giving advice to me when asked the list goes on and on - all without being paid any money!
  29. Younger sister Jean, aka: Aunt Dee Dee - taking her days off from work to come help
  30. For the people who have given monetarily.
  31. Meals being made to feed our family. Thanks. I am humbled.
  32. Dr. Forget's staff - They have been so kind from the beginning. I came in crying on the first day and was put into a room to fill out my paperwork. Thanks Sue!
  33. Songs that come to my mind often
  34. Being obedient more
  35. Doctors in my care - Dr. Linette, Dr. Simpson, Dr. Forget, Dr. Sanders
  36. Trusting God more
  37. Believe His promises to me
  38. Stepping out in faith and obedience when asked to do so
  39. Lean on Him when the going gets tough - OK that is every morning when I awake!
  40. To rely on the faithful prayers of many who are lifting me & my family
  41. Mercies that are new every morning when I need them
  42. God giving me endurance to go the distance
  43. This journey is not all about me. It is about God working in me.
  44. Brain cancer being the most humbling experience thus far in my life

I am very sure there is so much more to praise. Please comment as you see necessary. I am so thankful for God's continued faithfulness. God is so good. Share in this time of joy!


Will wipe away every tear

For the lamb at the center of the throne will be their shepherd.
He will lead them to springs of living water and
God will wipe away every tear from their eyes.
Revelation 7:17
I have more tears on my left eye due to the right lacrimal duct (tear duct) being radiated aka: fried. God will wipe away any tears even now prior to my resurrected (glorified) body. Just now the tears will be less on one side. I met with Dr. Simpson on Wednesday after radiation. He explained that I will have a dry eye due to the lacrimal duct being affected. In my terminology, "fried".
My sleep is better through the night. This past week I was waking up at 3 or 4 am for no reason.
This morning my hair loss is a little less. For those of you who like details, from my hairline back it is a good 3 inches of hair loss at one location. Thankfully a headband for now will provide ample coverage. As mentioned before I should continue to have hair loss even after the RT is completed.
Wednesday the 31st I meet with Dr. Linette to discuss treatment after the radiation. Please pray for clairity & wisdom for the doctor and Dave and I. I hope to know then when my next MRI will be scheduled.
Joe was and is having a hard time since Monday. He is not eating well. Nothing tastes good to him. He was also discouraged on Wednesday. He will need to have outpatient surgery on Tuesday the 23rd to correct his eye issues. He will not lose his vision. From what I understand he will have a gold plate put ablove his right eye and the doctor will help the "sag" on the bottom. The sagging was from his cancer removal surgery. A nerve was severed in surgery that cannot be corrected. I jokingly told Joe that he will be worth some money since he will have some gold in his body. He smiled.
Superman "shouper man" is in the house. After viewing the old cartoons this past holiday weekend, Stuart runs around with a play cape and arms up in the air saying shouper man. He cries profusely if we don't let him have his cape as a blanket for nap time. Cole found a solution thankfully. He gave Stuart his superman pajama top which is a little big. Stuart nows wears it during the day. He constantly says "I'm shouper man, I'm shouper man". So in conclusion if you see Stu with a pajama top on in public no worries we do dress our two year old with normal clothes. He is just fixated on Superman at this time.
Life with 3 boys is good. Very good!

Tuesday, January 16, 2007

Some Fatigue

Some fatigue has set in today. I had Bible Study this morning and could hardly concentrate. After coming home to feed Stuart lunch I left to have my RT scheduled for 1:15 pm. Having the windows rolled down did help a little. At 2pm I parked the van in the school parking lot to take a nap till the boys came out at 3:05. It helped. I will need to go to bed earlier. Also I think having the RT in the afternoon was a little difficult. Tuesdays are the only days it will be in the afternoon. I usually try to take a nap when little Stu takes his.

I have also noticed since surgery when I am somewhat fatigue my right eye is fatigued as well. It actually aches.

I did asked a few questions to Deb, Dr. Simpsons nurse. My hair loss will be progressive. It will continue to fall out even after the radiation is complete on February 9. As for the burns which I thankfully do not exhibit as of yet, some people have burns while others do not. Keep well hydrated and use Aquaphor 3x daily was the suggestion. Pray I am of the ones who will not have any burns. OK, I will have the look of a greasy head along with hair loss. So if you see me around I do take a shower every day. I am not a grease monkey. Also a great thing to note - I have not needed steroids. That is a huge answer to prayer!

18 more radiation treatments to go.



Due to the emotional sensitivity I have in losing strands of hair everytime I sleep, brush, shower, run my fingers through my hair and finding it on my robe, coat and sweaters - I ask you to please keep the silly hair loss comments and stories to a minimum. No bald jokes at this time.

I am sure I will at a later date be able to look back and smile.

Thank you for honoring this request. - Kate

Monday, January 15, 2007

The Hair Phase IV

As of 5:30 tonight I have shorter hair. It actually looks quite good. I am glad to have a change. A stack in back with a longer front. I can still tuck hair behind my ears. My balding area is not noticable to anyone but myself at this time. The back of my neck was little breezy in the cold air walking to my car. At home Carter smiled big and thought I looked "weird". Cole said some odd comment as well. I told Dave that we will need to work on that manly comment from the peanut gallery lesson in the near future to prepare them for their future wives and their hair ordeals. Knowing full well they (the wives) will have hair issues - hopefully never related to cancer.

Please pray for upcoming radiation treatments. Pray boldly.
1. hair loss to be minimal
2. burns from radiation to be minimal - I prefer none at all
3. vision to be protected along with the lens
4. long term - no secondary cancerous tumor arises from the radiation itself or cognitive problems
5. That I can laugh at the days to come.

Please also pray for the upcoming chemo (Temodar) treatment after the radiation. I will discuss this in mid February maybe sooner with Dr. Linette. I am still open to doing the chemo.

I am so thankful for my quiet times at home. Last night after reading I was struck by the following comment- I pray it will come true to me especially at Siteman.

That I will be sensitive and receptive to the ministering of God's Holy Spirit.

Christ, in whom are hidden
all the treasures of wisdom and knowledge.
Colossians 2:3

Saturday, January 13, 2007

Broken not crushed

Thanks for your sweet responses to me in regards to my hair. Yesterday was a low dip in the rollercoaster journey. Today is a new day. I was in the pit, God gave me a hand. I was in the trenches, yet a ladder is there to help me step by step. I was in the belly of a whale, yet there was a great regurgitation. I am broken, not crushed.

I think I will go ahead and cut my hair to a shorter length next Wednesday. I have always liked the stacked look. Siteman cancer resource room suggested that I should lessen the weight of my hair shaft. After a while I will probably cut it even shorter. There was a little hesitation in cutting it twice. First of all I was being frugal. I don't want to spend money on a hair cut twice in the next 2 months. Think of it as being a wise steward of our money. I normally only go every 6 months if that. The other hesitation was wondering if it would still be stylish to wear the wide headbands with shorter hair. Bandanas and hats would probably be a better choice. Some have suggested I also get it cut now so the family can adjust as well as me for the lack of hair. My hair today is coming out easily. I like to refer my loss of hair as a bundle of tumble weed. The dictionary describes hair as a slender threadlike outgrowth. I would love my body shape to be described in that manner as well. Just look under Kate for that description. ha ha ha. I will keep some hair for my scrapbook for memories.

As for the scrapbook please be sure to send your pictures to Michelle Roloff. You can email her by clicking on her name to the right of the post. She will then give you her snail mail address to send the picture her way.

Carter & Cole had their first basketball game today at 11. It is fun to have them on the same team. I have always loved basketball. Playing and coaching were great. It is a delight to watch my own boys take up this sport. Saturdays will be a highlight for the next 7+ weeks.

love - kate

Friday, January 12, 2007

Falling Has Begun

My hair is officially fallling out. My heart aches this morning after my shower. I was crying alot. Please pray for strength TODAY. I am always guaranteed that His mercies are new every morning. I did not expect for such a quick trial this early in the day. I am discouraged. Please pray also for wisdom on how I should deal with my hair. My two options are as follows:

1. Wait till the section is all bald. See how much falls out & see if the headband scarves will cover the empty space. Then wait the 2+ months in partial baldness prior to cutting my hair short to match the regrowth. They say it will take a good 2 -3 months before any new growth occurs.

2. Cut my hair really short now. Wear hats & scarves now. I have concluded that I will need to go "Butch" at some time in the near future. (No offense to any women who have short hair.)

It says in the Bible that a womens hair is her glory. I love my hair. I love my boys more. Aghhhh! This is a major trial with just the hair. I am willing to only do it for my boys. My heart is breaking. I did not sign up for the cancer hair loss club.

Now to him who is able to strengthen you according to the gospel . . .
to the only wise God be glory forevermore through Jesus Christ.
Romans 16: 25 & 27

That He would continue to strengthen me and He will get the glory.
Please pray for my emotions today. I am hurting.

Thursday, January 11, 2007

More on Joe & Prayer Request

I wanted to take this time to go into further detail of my delivering of the peacoat to Joe on Wednesday afternoon.

I rang the buzzer to enter the Lodge. It's good to know there is security in the building. After entering I met a lovely woman at the desk doing laundry. I told her I was there to visit Joe B. to give him a gift. She gladly told me he is in the commons area she had just finished talking with him. I went back with a big smile on my face. As soon as I saw him I said his name. I am sure it was loud. Oooops! God did not give me a timid voice. He had a smile on his face as well. I continued to tell him I have a gift for him from someone in Indiana. After that I read the blog post that I wrote about him to explain this gift. As written previously he and I along with others around were crying. He knew right away it was a peacoat in the box. I told him to "hold his horses and we will see." Yes, I did say that. OK, now I am just amazed at the rest of the conversations that went on in the Lodge.

I met many wives of patients that were receiving treatment. One particular is from LA. She said that stands for lower Arkansas. She gave me a Gideon Bible for me to keep. I told her I have many Bibles but thank you. I will keep it with me. Joe piped in and said he had a Bible just like that in the service during war. His had a metal cover on it and it was placed in his front pocket to give him extra protection from bullets.

Another wife came over to talk about her husband Gerald who has the same type of cancer in his left side of his brain. His speech has been affected along with his occupational daily living needs. She asked if I have considered joining a support group. I told her I had contemplated it yet it would take one night away from home from my family. Pray if it is God's will for me to be in a brain cancer support group that He will make it abundantly clear.

I told Joe that I still desire to come to his wifes memorial. To please let me know. It all depends on my fatigue factor. He understood. He took out his address book and asked me to write out my address and phone number. I put it under the "K" for Kate.

Today was an uneventful day for my treatment. Last night was a thrill though. Cole's front tooth finally came out with a little help from mommy and the pliers. Yes, pliers. Cole's teeth have difficulty coming out on their own. We usually have to make an appointment to have them pulled professionally. I guess you can put MD behind my name along with professional motherhood. He was so proud that he took his tooth to school for everyone to see. He is the only first grader in January to lose a tooth so far. The tooth fairy left 2 special coins for courage we are assuming. One was a Susan B. Anthony another a Sacagawea. Way cool to him!

Upcoming prayer requests:

1. burns from RT
2. hair loss to be as minimal as possible
3. vision not to be affected
4. lens protection
5. guidance on treatment after the RT

Much love - Kate

Wednesday, January 10, 2007

Not Finished with Me at Siteman

God is not finished with me yet at Siteman radiology.

Today was a very unusual day to say the least. After many phone calls and emails with doctors and a scientist from California, my treatment saga has taken a turn.

It has been discussed that when a patient has radiation in a certain location that location cannot handle anymore ever again. The body is very sensitive to radiation. Dr. Linette previously said that if I am were to stop treatment he strongly encouraged me to finish out the 30 radiation treatments. He said I could "twist his arm" about stopping the chemo. I can always do chemo in the years to come but, I can't always have radiation as an option.

So after much consideration, I am going to continue the RT without the chemo till Friday, February 9. Dr. Simpson has agreed to this also. (if you can remember he was strongly opposed to having RT without the chemo in the beginning) I had RT today at 2:45pm.

Looking back over today I was able to "lay out my fleece" so to speak with the doctors. My desire was not to continue the chemo. It was granted. That was answer enough for me.

I can't explain this change although I have stated previously that I am open to God's intervention daily. I don't presume to be a doctor. I don't want to be a fool. I will commit to RT for the full time. My hair loss will be from the right ear forward. What fun that will be to be bald in just one section! The hair might not grow back for a few months. My hair adventure awaits! The other immediate side effect will be significant fatigue. It will last at least 4 weeks post RT as well.

I am thankful for a concerned doctor friend in Texas who sent a very genuine email. I am also thankful for other friends who have supported us with all the decisions & options.

Brain cancer is unique. The brain has a separate immune system from the rest of the body. Amazing! Not one treatment outcome is the best! I will continue to use nutrition along with the natural compounds we have been researching with the RT and beyond.

Sorry to take you on such a roller coaster. On a funny note - I guess this makes the blog more interesting. Possibly more addicting to some of you. Ha ha ha

Cancer is like an investment portfolio. You try to pick the best option not knowing the outcome. But, (that is the emphasized word) as christians we have the Lord guiding our investment portfolio. Thank you to G.C. for this analogy.

As for Joe he was truly touched. I went to the Hope Lodge at 2 pm today to deliver the coat. I read to him the post I wrote about him. He and I were both crying in the eating area. Many others were listening & crying as well. Before I opened up the box for him he said he knew what it was. I said to him "How are you so sure?" He just smiled. I am delighted to tell you that it fit perfectly and he was wearing it with much pride. He even motioned ladies that were walking around to look at his new coat! The buttons have anchors on them. So cute! I continued to talk to the people around the area. (no surprise to all of you) Joe piped in with all the ladies cackling "Did you know I am a retired master sergeant?" I was so happy to hear him recount of his joys. Please be sure to click on the December 29 post of Joe. A Lodge employee posted Joes reaction after I left.

Thanks for your continued prayers. This is a daily walk.
Just glad to not take chemo at this time.

Tuesday, January 09, 2007

Answering Concerns

I would like to take this time to address the previous blog comment from Tiffani. It might address other peoples concerns & questions who have been reading the blog.

Thank you Tiffani for you courage and honesty to post your concerns in regards to stopping the conventional treatment of radiation and chemo.

Why we are choosing unconventional at this time;

1. Gods leading

2. Dave & I know there is no proven cure for cancer yet, we desire to try the unconventional first & see how far we get.

3. My desire with unconventional is my quality of life during the "wait & see if it returns" time. Not knowing when that time might be.

4. I am willing to go back to conventional if that is what I am supposed to do. I am confident that God will give me the courage.

** Dave & I are open to whatever lies ahead with the cancer journey. Our decisions are difficult & weigh very heavy on our hearts. My family is so precious to me.

Yes, I so much want to know the future. Yes, I am anticipating the March MRI and the subsequent others. I have heard from previous cancer patients that you live from one MRI to the next. I am seeing some truth in this. Each day I have to remind myself to live day by day sometimes hour by hour.

I truly hopes this answers some of your concerns. Always seeking wisdom.
With humility - Kate

Keep Checking In

Dave has not had any extra time to devote to writing the blog post. He should be able to get to it in the next few days. He had a school board meeting last night then followed by some dear friends who came over to pray & talk with us after the boys went to bed. Tonight the boys had basketball practice. Keep checking in for the update.

As for the doctors . . . PRAISE . . . . .
  • Dr. Linette will continue to be my oncologist. I will need to see him once a month with labs prior to the doctors appointment. My next appointment is Wednesday, February 21 at 9 am. I will have my MRI sometime in March.
  • Dr. Simpson's nurse, Deb called today & stated that he knows this is a very personal decision. It was also said that they realized that this wasn't a easy or quick decision. They knew we were concerned about many details of cancer and the treatment options. Deb said that he will be sending me a letter sometime in the near future. Nothing for me to sign. Just some information.

I was able to talk to Dr. Linette on Monday and let him know that I do respect him as my doctor & his opinion. I also wanted to make it known that we do not think ill of the pharmaceutical companies.

With a humble heart - Kate

Monday, January 08, 2007

Discontinued Conventional Treatment

After much prayer, seeking God's will, thorough research & peace in both our hearts I have discontinued the conventional treatment. I have started on a new treatment plan using an unconventional approach. Dave will provide more specific details in the next few days.

Also I am going to deliver Joe his peacoat hopefully on Wednesday with Stuart.

You can pray for Dr. Linette (oncologist) & Dr. Simpson (radiation oncologist) response. They received a phone call this morning with the news. Dave & I will probably set appointments to discuss this in person with all the research as we feel it is the honorable thing to do.

At total peace with this decision - Kate

Saturday, January 06, 2007

He Will Lead Us Safely Through

When you pass through the waters . . . they will not sweep over you.
Isaiah 43:2
God does not open paths for us before we come to them, or provide help before help is needed. He does not remove obstacles out of our way before we reach them. Yet when we are at our point of need, God's hand is outstretched.
Many people forget this truth and continually worry about difficulties they envision in the future. They expect God to open and clear many miles of road before them, but He promises to do it step by step, only as their need arises. You must be in the floodwaters before you can claim God's promise.
. . . He will lead us safely through.
Taken from the devotional guide Streams in the Dessert by L.B. Cowman for January 6.

Friday, January 05, 2007

A Continual Journey

Today was my 7th day of radiation treatment. I have enjoyed getting to know various patients and staff at Siteman. In regards to our previous post I want to clarify that I will not stop the conventional treatment UNTIL we have a clear direction & answer to the unconventional and nutritional approach.

As for me personally, I have been asked "How are you really doing emotionally, inside?" My honest answer is "quite good." I truly have a peace about waiting for a direct confirmation. I have to admit a few weeks ago I had internal panic. But that panic has been lifted. Every morning I really have to consciously focus on just that day at hand. I tend to want to look ahead.
"Do not worry about tomorrow for tomorrow has enough worries."

Yes, I do not want the possible side effects of radiation. Yes, I still have a minimal concern about my hair loss, wondering how much and how far back. My main concern, however, is my vision & cognitive dysfunction. Please know that I am confirmed that God is bigger than any possible side effects, statistics, etc. He cares for my every need--emotional and physical.

Cancer has taught me LOTS! Here are a few examples.
1. I have been in awe of the complexity of love, specifically God's love for his children. His grace has been significant as well.

2. Being able to slowly go beyond "Me thinking" to "You thinking." My compassion for others has changed. It has a long way to go though. I am one tough cookie to crumble. I am certainly a work in progress. (I guess it took a brain tumor to jump start this change.)

3. In the past I tended to cringe when the weekly tithe check was written. Slowly I am seeing the vital importance in giving. I have been given so much in this trial. Wow! I sure am greedy with money. I am realizing that our money is really not mine, but His. He provided it for us. (I knew this but never took it to heart--only to head.)

Dave and I are trying to not make nutrition our main focus. We also are trying to not make it a legalistic approach with our boys. We want to instill healthy habits that they can carry throughout their life. We want them to have strong minds and bodies and furthermore be men of honor in our society who love God and want to serve Him. God's Word says our body is a temple of the Holy Spirit (I Cor. 6:20b). Therefore, we should honor God with your body. (See I Cor. 3:16 as well). I can't help but think that what we put into body is equally important. Cancer or not.

Some have asked for my specific change in eating habits. Please refer to the post "Does Cancer Feed Off Sugar?" Look at the book lists. We are using common sense with Dr. Budwig's approach (increase Omega 3 while decreasing Omega 6) along with Jeanne Wallace from Utah. A 38 minute video clip from a recent presentation is very informative.
It will get you started in the right direction in your quest for healthy eating habits.

Thank you for continuing this journey with us. In the end it is important to remember that:
1. Whatever is decided that I am at peace with the decision. Ultimately it is my decision not anyone else.
2. That God directs this decision & gives confirmation
3. To be wise and prudent.


PS - Happy Birthday to my sister Jean tomorrow aka: Aunt Dee Dee!

Thursday, January 04, 2007

Unconventional Therapies

To follow-up a post from a couple of days ago regarding our concerns with the current treatment plan. Unfortunately, some people are drawing a false conclusion from our blog that we are only going to use nutrition to treat Kate's cancer. Instead, we are researching unconventional treatments that are gentler and have shown great results. Studies of these treatments have been published in many different medical research journals. We don't accept treatments based on opinions and mere anecdotes, evidence is needed to convince us.

There is plenty of evidence in support of these unconventional treatments, however, they will probably never be accepted or practiced by the mainstream medical community. (No offense to any medical practitioners reading this) The reason is, these treatments do not involve pharmaceuticals. If you've done as much research as I have you would realize that the modern medical community prescribes drugs that have successfully made it through all three phases of clinical trials and are approved by the FDA. Clinical trials are very expensive and require a lot of patients to sign up. The majority of clinical trials are funded by pharmaceutical companies, in the hopes that they eventually can patent the drug and make a profit. Unconventional approaches, like those using natural compounds, can not be patented. Therefore, what company is going to spend millions of dollars funding clinical trials for a product they can't patent and wouldn't be able to recoup the cost? You see my point.

Just so you know, Kate and I have nothing against pharmaceutical companies, we are frequent users of their products and will continue to be. However, we also believe that not all diseases can be solved by pharmaceuticals. Kate's brain cancer is a perfect example.

Kate said that she will try and post sometime tomorrow about her interaction with fellow patients and continued treatment at Siteman.

Please continue to pray for wisdom for us.

Dave & Kate

Wednesday, January 03, 2007

Whew! One long day!

Today was one long day! I arrived at Siteman at 8:45 am. Lab work was supposed to be at 9. I didn't get drawn till 9:40. During the wait I had a great conversation with an older couple. At 9:55 I went upstairs to see Dr. Linette. I was told to go ahead and get my radiation then return. At 10 I received my radiation then waited to see Dr. Simpson. After seeing Dr. Simpson I proceeded to the 6th floor to wait. Wait. Wait. Finally I was told by the nurse to go ahead & get some lunch it might be a while. I finally was seen at 1:45. Dr. Linette answered all my questions fully. He also said he would continue to be my oncologist if I decided to stop treatment. He did advise against it which is no surprise to me. He did have some good reasoning. I left Siteman at 2:20pm. Whew! I am tired. I did not sleep well last night. I really hope to sleep better tonight.

Please be praying for divine wisdom. We are planning on seeing a nutrionist this Friday evening. We also might consult another nutritionist from Utah who works closely with brain cancer patients.


Tuesday, January 02, 2007

Treatment Fears & Concerns

Ever since we started this blog we've tried to keep everything as open and honest as possible with what we are going through, what we are feeling, what our needs are, how you can pray, etc. Over the past several days, Kate and I have not been at peace with her going through radiation and chemotherapy treatments. The effectiveness of the treatment (chemo especially) is not well known and the potential long term side effects are very scary. Kate and I had a special time of prayer together on New Year's Eve to lay out our concerns before the Lord, asking for wisdom and confirmation from Him if we should stay on this course.

I'm embarassed to admit that we did not have prayer time together before she started treatments, only individually. If fact, we hadn't prayed together as a couple for a long time. This is my fault as the spiritual leader of my family, however, today is a new day and God has awakened me to do this more often. Praying with your spouse is a privilege and a very wonderful thing!

The chemotherapy drug Kate is taking, Temodar, has really only started to be used in the past few years. A very real risk of taking this drug is developing leukemia. On the radiation side, each daily dose she receives is significantly more than a general x-ray. Potential long term side effects include vision problems, cognitive disfunction, and secondary brain tumors, among other things.

If you've been following our story for sometime, by now you realize there are no "standard" protocols in the medical community for treating cancer, especially brain cancer. Doctors only prescribe approaches they think "might" work, and even then each doctor has a different opinion. It sure seems like a big guessing game with my wife as the guinea pig.

None of these treatments deal with the root cause of why Kate developed brain cancer in the first place, they only work to try and slow the tumor growth (if any remains). It seems logical that if you don't correct the root cause of the problem, then you are likely to get cancer again. From my research, I think the answer lies with one's nutrition. That is why we have radically changed Kate's diet to cut out processed sugar, reduce animal fats, reduce preservatives, increase Omega-3 (polyunsaturated) fats, increase fruits & vegetables, use purified water and purchase more organic foods.

If cancer was simply a genetic problem then I would expect all countries to have nearly equal cancer rates. But they are not, only Western countries have high rates of cancer. The obvious discernable difference in my mind, which has been researched and published extensively, is our dietary habits. Hence the reason why I am so passionate about improving my wife's (and family's) diet. I hope you will take this information to heart as well.

As we continue to make decisions regarding treatment, here are some immediate prayer requests:

1. If there is any reason why Kate should discontinue the current treatment plan and choose another plan, that God would make it abundantly clear to us.

2. If we continue with the current treatment plan, that Kate would be protected from long term side effects. Also, that short term side effects (fatigue, nausea, vomitting, constipation, loss of appetite, hair loss, etc) would be minimal and bearable.

3. That Kate would continue to have opportunities to minister to others.

4. That our marriage would continue to grow stronger through this trial.

5. That we would continue to say "yes" to people who want to serve us during this time.

6. That we would grow much closer to God and avail ourselves to spend time with Him, in the Word and in prayer.

Finally, a friend sent us a devotional email this week that was written by a well-known pastor (John Piper) and I wanted to share the high points with you. You can find the entire text of the devotional at:

Don't Waste Your Cancer

1. You will waste your cancer if you do not believe it is designed for you by God.

2. You will waste your cancer if you believe it is a curse and not a gift.

3. You will waste your cancer if you seek comfort from your odds rather than from God.

4. You will waste your cancer if you refuse to think about death.

5. You will waste your cancer if you think that “beating” cancer means staying alive rather than cherishing Christ.

6. You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God.

7. You will waste your cancer if you let it drive you into solitude instead of deepen your relationships with manifest affection.

8. You will waste your cancer if you grieve as those who have no hope.

9. You will waste your cancer if you treat sin as casually as before.

10. You will waste your cancer if you fail to use it as a means of witness to the truth and glory of Christ.

Thank you for your prayers and support and encouraging blog posts. We appreciate and cherish all you are doing for us. May God double the blessing back to you.


Best Day Ever

Yesterday on New Years Day the older boys were picked up by some friends of our to go roller skating. Upon return they both were talking at mach speed. Carter told Mr. Byars that this is the "best day ever". He continued to tell him that the roller skating was a blast & that they get to watch a special movie sometime later. Cole quickly told us that he officially went around the rink 16 times. I smiled when I heard him say this. He is so much like his father in the numbers arena. It's all about numbers. Go Cole! On a side note safety Dave made sure the boys had all of their gear on for the roller skating - helmets, elbow & knee pads & wrist guards. I never had any of that growing up when I went roller skating.

The Christmas break for the boys was a quiet one. They both enjoyed the ice & roller skating. Yesterday morning they played "deed-a-lump" with Stuart in the basement. It is a game that my dad plays with his grandchildren. He normally puts them on his lap & pretends his leg is a horse & says deed-a-lump while moving his leg up and down. Carter & Cole modified the game by putting Stuart on their backs then ran & jumped up & down while saying deed-a-lump. The boy who doesn't have Stu on his back is the spotter so little Stu doesn't fall off. Stuart was laughing & truly enjoying his older brothers. His long nap showed his exhaustion. He tries so hard to keep up with them during this break. Carter & Cole return to school on Wednesday.

Today is a busy day. Joe at Siteman will get his grocery goodies. I may have to deliver them to the Hope House since there is no way he will be able to carry them with a walker. I have some errands to run. I also have another doctors appointment (not related to the cancer) at 1:30. Someone is coming over to the home this afternoon to fix our doorway that is quite drafty. Carter & Cole have basketball practice tonight. Whew! Never a dull moment. I wouldn't trade it for anything though!

I am thrilled to announce to you that a family member in Indiana will be getting Joe a peacoat. It will be delivered to me in the coming weeks. I can't wait to give it to him. My heart was so filled with joy when I received the email about the gift. Joe will truly be shocked. I am already thinking of how I am going to present it to him. I want to write a note. Please pray the words come to me. Continue to pray for him and his loss.

Pray for wisdom for Dave & I with the treatments. New Years Eve we prayed together for everything that is involved. We want wisdom with our every step.

This Wednesday is a busy day at Siteman. I will have my 9 am labs, see Dr. Linette at 9:30, 10am RT & then see Dr. Simpson. Pray specifically for the lab work & for the continued questions.

Still seeking wisdom.