When It's Just Your Own Fault!

Sometimes in life, due mostly to your experience, you just know better. You may not want to deal with something, you may want to stick your head in the sand, you may just hope for the best, but really, you know better.

Yesterday was a very frustrating day for me, but I knew better and could have probably avoided the whole thing if I had been more assertive.

I went to MD Anderson for a check up with the Brain and Spine folks. Seems harmless enough, but to go to MD Anderson - which is curative medicine - I have to sign papers to quit Houston Hospice which is pallative care (keeps you comfortable). You typically cannot do both.

The problem is that it takes about 2.5 hours to re-enroll in hospice care. So I go off hospice for 1 day and then totally re-enroll (in this case on Monday).

I should have just skipped yesterday at MD Anderson. This is the part when I knew better. No tests = no information and I only had a doctor visit scheduled (no information). This entire thing could have been done with emails through my personal MDA website. I could have answered all their questions about how I am doing and he would have said exactly the same thing....

The result: Let's wait for a month or so, do the MRI's again, and then see if we want to do anything else.

Maybe I am just getting too tired to fight. I used to cancel appointments all the time or at least threaten to if we had no testing prior. We are all too busy to chit-chat!

I am scheduled for more testing in late July, but will be on hospice until then.

On a much brighter note, I have had a great week. I saw an old friend of mine from early elementary years (so by "old" I clearly meant we have known each other a long time, not that we are old). We played soccer together and looked so similar running around on the field people called us twins. We had a great time catching up.

Tuesday Nicole came and we had some good Bible discussions which is always fun.

Yesterday Thelma took me to MDA and then we went to the store for vitamins. Turns out I should have been taking vitamins the whole time I was doing radiation to help my nerves grow back. Vitamins normally nauseate me so I quit taking them but I didn't tell anyone so this is my fault. Back on vitamins!

Some new additions to our household are a lift chair and a wheel chair. I am grateful for both of them. The lift chair helps me get up and it has several settings so I can take a nap in it. The wheel chair is light and thin. We have had to move some furniture around, but at least I can get around without being scared I am going to fall. My balance is terrible.

Because I don't go upstairs anymore, I never have any idea what Connor's bedroom and bath look like. If you come to stay with us, be prepared to do some cleaning (unless one of the moms has been here recently!)

I guess that's it. We appreciate your prayers. We wish you all a great summer and if you have kids, we pray you get to spend some quality time with them.

Much love!
Kelli

Life After Radiation? Prayerfully Hopeful

I finished my last brain and spine radiation on Monday. I think I was so excited about being finished yesterday that I may have overdone it a little, but who cares? I have nothing but time to recover...

The expectation is that radiation continues to work for the next month or so and my doctor feels that I should see more benefit as the swelling from the radiation goes down. That is our prayer around here these days.

I am slowly coming out of the fog that has been my existence over the last 3 weeks - hurray. My doc wants me to continue with 2 steroids per day, then cut to one next week. If I notice pain, then I should go back up to 2 and just deal with 2 per day. Otherwise we will work our way back down to 1, then 1/2, then none (ideally). I am ready to give up my chipmonk cheeks for sure!

Faron shaved my head again. Saturday morning my hair practically jumped off my head and ran away. We knew hair loss was a possibility since they were radiating my brain, but it was hanging in there really well. Then I noticed my scalp starting to hurt, but I just assumed it was the sunburn from Radiation. But when the first clump jumped off my head, and we realized all hair was abandoning ship,we shaved. Instant relief. Now I can put my goop on my head to relieve sunburn as well.

I started back with hospice yesterday and should get a lightweight wheelchair tomorrow. I am comforted by hospice because I know I can pick up the phone and call someone if I have any questions or concerns. I also like that they deliver everything - meds included. And I am glad to see my team again.

Since I have been doing the radiation, I have been feeling so much weaker. Again, the doc thinks it is due to swelling around tumor sites which should decrease and improve my mobility, but I still think I need the wheelchair - too unsteady with walker right now.

That is it for us right now. I have a follow-up next month. We are praying for healing - for my body and the world in general! Love and thanks for everyone's support.

May you be blessed as you bless others!
Kelli

Oh How We Love Radiation!

This is just a quick update blog around how radiation is going. Please keep in mind that the radiation around the covering of my brain and in my lower spine is simply to relieve symptoms I am having and not to cure my cancer or put it into remission. I think very highly of all of my doctors, but I see the humor in their protecting what I think of as "their stats".

I have clearly become God's stat to them.

The only benefit I have seen after 9 zaps is that I can swallow better (don't get me wrong - swallowing is clearly important). Chewing is difficult, but mostly because I get tired of doing it and just quit. I see milkshakes in my future - not so bad!

My rad doc has requested that I increase my steroids by 1 pill per day. His reasoning is that the radiation itself causes swelling that interferes with the results we are looking for. He wants me to try the increased steroid for 3 days and we'll see if that helps. Apparently patients get the benefit of radiation well after the radiation stops (and the swelling stops). He just does not want me to have to wait. The steroids will decrease any swelling - we hope.

Therefore, we are on strict pill management: get up between 4-6 am (I wake up here anyway), EAT (yuck) and take steroid. EAT between 8-10 and take a steroid; EAT between 12-2 and take a steroid. Then maybe I won't be up all might on steroids. ALSO take anti-nausea one hour before being zapped. this pill will knock me out for the rest of the day.

Days and nights getting mixed up here, so help me with my countdown. Including today 5 more zaps. Then we are finished - I PRAY. Since we have weekends off, that puts my last zap next Monday at 4:30.

If anyone mentions the ringing of a bell, punch them for me. There will be no bell ringing ever again for this girl!Somene rang the bell yesterday and I immediately started praying for them.

SPeaking of prayers - thank you!
Until next time - may God Bless us all!
Kelli
P.S. Frannycat - if you are reading this, please post a comment with your email address. I can't find it anywhere and would like to get back in touch as well. I will not post the comment but delete it after I write down your address!

On Planting Seeds and Such

Let's start with the medical stuff...
I start radiation tomorrow and my doc is hopeful that I might see some relief from the symptoms by this weekend. How wonderful would that be?!!! Thank you Lord.

The doc I am talking about is my radiation doc (Perkins). I have no doubt that God worked through that man 6 years ago to save my life. There is protein in blood that sometimes/maybe can be used to indicate cancer activity. Dr. P ordered that blood test in May of 2005. My medical oncologist, Dr. T, was quite put out because this test is notoriously wrong. However, because the level was elevated, we had to follow up. Six weeks later - higher. Not concerning or anything, just higher. Test after that - higher. Time to start looking. We found the cancer had spread everywhere, but there wasn't a lot of cancer anywhere. With weekly chemo for 8 months, the tumors shrunk to nothing and I was off chemo until cancer returned in 2008. Guess how we found that cancer had returned? Same protein. At no time did I experience any symptoms of growing cancer - just that tumor marker that gave us an early heads up. Anyway - it was good to see Dr. P again and thank him in person. I figure I have a good 3 extra years hugging my family so far. Pray for your doctors.

There is even more to my THANK YOU LORD, sentiment. For the entire story, we have to go waaaaay back to high school when I don't think anyone could have mistaken me for a Christian. However, I did have a good friend - let's call her Liz (because that's her name) - who tried to witness to me on several occasions. I wanted nothing to do with it. God was for people who...let's just not go there right now as I don't really want to think about the person I was. Anyway, my friend's mother, Betty, has been sold out for Christ for as long as I have known her. I appreciate that she never made me feel uncomfortable, but she would ask about my relationship with God all the time. I hope I was respectful even if her words went in one ear an out the other.

In 1986, Betty - in response to a direct order from the Holy Spirit - wrote a book called "Ten Women of God". I can remember being in Liz's pickup truck one afternoon when she told me God had told her mom to write a book and I had no doubt her mom was crazy. I was only mildly surprised when she really did it.

SKIP about 25 years here...

From that book began the Tenth Woman Ministry (www.thetenthwoman.com). Part of that ministry includes rallies and retreats. The Rally for last weekend was scheduled 4-5 months ago and I sent in my registration in knowing very well that I had no idea what kind of shape I was going to be in.

Then, about 3 weeks ago, this MD anderson stuff popped up. I know in the previous blog I talked about how nervous I was with timing, but what I didn't want to mention is that I was also worried that I would end up with things scheduled last Friday such that I could not go to the Rally. I just didn't want to broadcast that we weren't going to be home until we got back. As you know by now, God handled everything in His perfect way with His perfect timing.

The Rally was great - we had our hearts broken in the morning by Barbara's story, but we were inspired by her grace and love of the Lord through such difficult times in her life. In the afternoon, we were reminded of what it means to FIX your eyes upon Jesus with skits, teaches, and some quiet time with God. The Tenth Woman Team put on a fabulous Rally.

After the Rally, Liz took me home and we had a wonderful time laughing at me. We talked about her witness to me all those years ago and how hostile I was to her (unfortunately true). We laughed about how, when I first became a Christian, I did not know how to tell people about Jesus. I figured that everyone in this country - where we celebrate Easter and Christmas pretty regularly - has heard of Jesus and if they want to know more, well, I was certainly no expert. At the end of that first Bible Study, Christian Believer, I remember vividly that the members of the group each told what they thought your strengths might be. Several people said they could see me spreading the word. I clearly took that as something they were trying to come up with to be nice because that was CLEARLY NOT ME! Oh, how God must have laughed, knowing what was to come.

In 2002 after I started my cancer treatments for the first time, Betty called and asked if she could interview me for her Tenth Woman Series Videos. She said she didn't know if she would use the interview, but I didn't care about the video. I was excited to spend some time with Betty and I knew it would be a hoot. I had no idea she was going to get so personal, but I had read her book and I trusted her editing, so I tried to be as honest as I could. I look back at that and am reminded how God truly changes hearts. Ten years earlier I don't imagine I would have thought it possible to spend hours talking about God in my life and having a blast!

Here we are at God's (and our) belly laugh...that interview as been edited into a form that is currently on a ham radio network being broadcast around the world. "My" particular interview was apparently broadcast last week - right before the Rally - all over the world. Of course this is not "my" interview - all of this is God's. His Work. His Plan. All I did was say yes to something that sounded like fun. Think God is laughing at me? I KNOW IT! We are all laughing at me.

To all you seed planters out there - please keep planting those seeds. You really don't know what will grow, but God sure does. I thank God for all the people out there who planted those seeds! In Matt 13 Jesus talks about the parable of the Sower. In verse 19 He talks about those that hear the message but don't understand it (me - but thanks for trying Liz. Apparently something stuck). I don't really think verses 20-21 apply to me, but boy-oh-boy verse 22 has me all over it! Now I have my sights set on verse 23.

I hope you all have a wonderful day. Please send a prayer up that the radiation helps.

Love to all! Kelli

What a Relief!!

God is just so GREAT! I am so relieved right now I can't stand myself. It has been a trying week as I have been battling my patience and my reliance on the Lord.

To backup a bit, mom and I went to see my brain and spine doctor on Monday. I decided that the symptoms of the cancer in my brain were decreasing my quality of life to the point that I was ready to go back and seek more treatment. I can't hear unless people speak slowly - giving my brain time to process the sounds. Talking on the telephone is nearly impossible now, as is hearing the television. Connor and Faron are adjusting to looking at me and slowing their speech, but it sure is frustrating.

My balance is such that I really shouldn't take a step without the walker. I took a bad fall a week ago and still have to take pain meds for my back. My arm looks like someone beat me up (I guess I did!)

The doctor said although he did not know if radiation would make my symptoms better, he was fairly sure the radiation would slow the progression. At least that's something. My insurance would not authorize the spine test he wanted, but he said we should not wait for that test and go forward with the brain radiation - we can do the spine radiation if needed once he fights the insurance company for the test.

In summary, the feeling I got was that brain radiation should be started ASAP and then we'll go from there. When he left my room MOnday afternoon, he told me to wait in the room until they scheduled with the radiation folks and he would see me in a month. Radiation on the brain only takes 10 days (as opposed to the breast which took 6 weeks).

Of course, that was not to be! His nurse came in and explained that since it had been more than 3 years since I had seen the radiation folks, I had to be scheduled as a new consult. ???? I have only been going to that place for 9 years. There is nothing new about me and MD! Apparently the schedulers could not schedule an appointment on the computer - they have to call the radiation department and talk to someone and the appointment blocks out more time. The problem with initial consults from a patient's point of view is that they take forever to get scheduled. In my experience, the minimum time it has taken for an initial consult with a new doctor is three weeks. The nurse sent me home and said to call back the next day. If I could tell you how many times I have heard that....the anxiety started to kick in, but this time I immediately started praying.

Tuesday - no word.

Do you ever have times in your life when you know - you KNOW - that this too shall pass, yet you also know that you are going to be challenged? I knew it. I could feel the doubts pouring in from the enemy. I was feeling that I had waited too long to start treatment and now I was going to have wait even longer. I knew that God was in control, but I still wanted to go down there, camp out at someone's doorway, and not leave until I knew something. I wanted to call and bother someone until I had answers. I could imagine not getting an appointment until a month from now - initial consult and all.

This time I prayed. All Tuesday, all Tuesday night, and Wednesday morning. Wednesday morning I sent a very nice email to the nurse we met on MOnday. She sent a response that she would get back to me by the end of the day.

Wednesday night - no further response.

Woke up at three thirty this morning and prayed. I told God how nervous I was and that I knew it was wrong to doubt Him. I told Him I knew He was in control. I told Him "I believe - help my unbelief!" I told Him "I trust, help me trust more!"

At two o'clock my mother-in-law and I went out to lunch. I just had to get out of the house and get my mind off things. As soon as we sat down, they called. My appointment is Monday (Praise God) and it is with the same radiologist I had 9 years ago (Praise God). I am just so thankful to the Lord. This is totally His doing.

If you are so inclined tonight when you go to sleep, say a little praise prayer for me.

Will let you know more on Monday.

Much love,
Kelli

In the Words of a Friend

My dear friend Nicole was here yesterday - it was her turn to "babysit" me. We ran several errands, ate lunch, she cleaned, and then we talked about God. Nic is one of my sisters-in-Christ that can always be counted on to tell me the Truth. She does not tell me things just to make me feel better - she tells me the Word. She is one of my many blessings.

Anyway, she sent out an email this morning about me and I thought I should put her words in this blog.

From Nicole:
Hi everyone. Thank you for your continued prayers over Kelli.

In her blog awhile back, when she discontinued treatment at MD Anderson, it came through administratively a bit incorrectly.....and her husband and son received bereavement cards! They had a laugh over it and gave the nurses a call to let them know she had just switched to hospice care and was still around. Praise the Lord that she and her guys have a sense of humor.

This week coming week on Wednesday and Thursday, she will switch back into curative care and go back to MD Anderson to have some other testing done on the cancer in her brain and spine to see if they can do some radiation to relieve some of the effects of the cancer. In addition to the the palsy on one side of her face and imbalance, she now has no sense of taste and says that it sounds like there is an air conditioner running in her head, so she has a very difficult time hearing, especially on the phone. She is also having trouble picking out the right words when she is talking, but we spend the entire day talking until she can't talk anymore and I thought she did very well with everything. She will get the results the following Monday. This radiation was not even a consideration 4 months ago to her, so it's a pretty good indication of how the symptoms are that she is willing to do it now. Let's pray for the Lord's will and for His abundant grace and mercy upon her.

Praise for the day we spent together yesterday. Other than some nuts and bolts of life that we took care of, we spent most of the time talking about the Lord and His Word. She is listening to our Revelation study at home on the computer, and she has been so thankful for the way Mike teaches. I linked her up with Inductive Bible Study method online to "learn to fish" and teach her guys as well when they study God's Word together in the evenings as a family. So, praise the Lord for the internet and that our studies are available and for the manner in which we are fed--carefully, with Godly fear and reverence, allowing the Bible interpret itself and by the Holy Spirit. As her friend, it is a beautiful thing to watch the Lord comfort her with His Word all these years, but especially now. If it were not for the Lord, I would want to walk around with a sign that said, "I hate cancer", but like we learn as we work through things that Paul and Peter and James wrote, the Lord is what makes the worst possible situation not only bearable, but a cause to praise His name and rejoice in Him because He is right there providing whatever is needed moment by moment in abundance. You stop thinking about cancer and start thinking about Him! She has complete peace knowing that her sins were paid for on the cross which destines her to be with the Lord always and that this tent we live in is temporary and supposed to be in a state of decay. If you are reading this and do not know Jesus as your Savior, He loves you, wants to have a relationship with you that starts with you believing that He paid the full penalty for your sins on the cross. When you do that, you are forgiven, filled and sealed with the Holy Spirit, and you belong to Him and are assured of your salvation. You learn to walk with Him and live a life that is no longer controlled by sin but instead by the Holy Spirit by reading His Word to know His thoughts and plans and to hear His voice and praying to Him, sharing your thoughts and giving your life to Him. If you have never done this, if you have trusted in anything other than Jesus to save you and get you to Heaven, including your own works--the Bible is clear in Ephesians 2:8-10 that salvation is by faith alone through God's grace alone not by works that no man can boast---there is but one way to Heaven, one way to peace today and forever, and it's Jesus Christ.

Hope all of you are well and have your eyes and mind set on Jesus!

Amen to Nicole's words.

Love to you all - Kelli

How God Must Laugh at Me!!

In one of my last posts, I think I mentioned that I was going to try taking a steroid to alleviate some of the symptoms I am having - dizziness, loss of hearing, and nerve pain around my bottom and down my legs. The idea is that the growing tumors may be causing inflammation that can be decreased by the steroids.

I tried them for 2 days and then went off of them to see if the symptoms came back - and they did.

So I am back on the steroids for who knows how long (the rest of my life?).

KB (my nurse) and I had a long discussion about the side-effects of long-term steroid use. Here is the sad part: if I am honest with myself, the side-effect that bothers me the most is that MY FACE WILL GET PUFFY!!

I have bruises all over my body, am 100 lbs over-weight, the entire left side of my face does not work, my hair is coming back in gray and patchy and I am STILL CONCERNED ABOUT HOW I AM GOING TO LOOK! Seriously.

Much love! Kelli