The Brain and Spine Center

As a result of the brain MRI, I had an appointment with the Brain and Spine folks at noon on Mon. Dec. 20, followed by a chemo at 3:00. They warned me that since I was being worked in to brain and spine, I could expect a long wait.

I got in at 4:00 and got out at 5:30. I lost my place in line for chemo and didn't get home until 9:30, but that's another story.

I got a very thorough examination by Brain and Spine and experienced the roller-coaster that is cancer. Because MD Anderson is a teaching hospital, patients are often seen by fellows before they are seen by their doctor. The fellow practices being the doctor and often will give their advice. Never listen to the advice of the fellow - it rarely agrees with what the doctor says.

Sometimes the patients will be seen by the doctor's nurse practitioner. This person's advice is not usually contradicted because he/she works closely with the doctor on a daily basis. Here comes the rollor-coaster part. After my examination, the nurse practitioner showed us my brain (still there) and where the cancer was growing. She said my symptoms were definitely caused by the cancer. She also said the cancer was in my spinal fluid coming from the 4th ventricle in my brain, but the tumors weren't "strawberries", more like a sprinkling of "sugar". Due to the "sugar" similarity, she thought the doc would send me to neurosurgery for an implant that they could use to inject chemo straight into my brain and that they had GOOD SUCCESS with this type of treatment. Finally, she said this type of treatment does not penetrate very deeply into tumors, so it does not work on "thicker, strawberry-like tumors" so I am lucky we caught the tumors early. (Roller-coaster going UP).

She left and Faron and I were pretty excited. (Imagine being excited they are about to stick something semi-permanent in your brain. This is a wild life we lead).

The doctor comes in and we took a plunge. He said the tumors were too big for that treatment. (????) He wanted to put me in a study using Avastin. He said they really don't know why, but avastin (a chemo) seems works in SOME situations like mine where the cancer started somewhere else and migrated to the spinal fluid. He said he's seen some of his avastin patients get better (symptoms get better and cancer stops spreading). He explained that cancer cells produce I-forget-what as they try to grow and that avastin comes along and mops up whatever-they-produce to keep them from growing. I said that still didn't explain how that would help me get BETTER (as opposed to not getting worse) and he said they didn't know, either. Hence, the study part.

When I told him it sounded like I would have to be on avastin forever, he said "Yup - until we find a cure". PLUNGE

He wanted to be sure I understood there is no cure for my condition and the best we can do right now is try to maintain quality of life. I have been dealing with bad news for 8 years and I know better than to get worked up over this kind of stuff. I know God is in charge. But, still, PLUNGE!

The "good news" is that avastin is a once a week infusion that I can take with my other once a week chemo, taxol.

The "bad news" is that I have to do MRI testing on my entire spine (MRI is BACKED UP right now), something called a cisternogram (2 day test - light you up with radioactive material and take pictures to see how your spinal fluid is circulating), and a spinal tap to check spinal fluid.
I checked my schedule yesterday (Mon De. 27) and discovered all these tests were spread out over the next 3 weeks and i would not see my Brain and Spine doc again until JANUARY 20! Gotta love MD Anderson.

I sent them a message letting them know my symptoms are getting worse. Over Christmas we noticed that my left eye no longer closes all the way.

They called me yesterday and told me to clear my calendar this week. I am supposed to be down there by 7:30 this morning and will be testing all day today, half the day tomorrow, and half the day Thursday. Progress...

My biggest concern is my blood pressure. Right now it is too high and will keep me out of the study. My blood pressure has slowly been climbing over the last two years (along with my weight and chemo) and I think they will probably send me over to the cardio folks to get it under control.

To finish up the PLUNGE part, my brain and spine doctor said if this didn't work, he thinks radiation will be the next best thing. WHAT???!!! Have you seen that commercial about your brain on drugs where they fry the egg? My brain is the only useful thing I have left!!! If I can't really clean the house or do much physical stuff anymore, at least I can still help Connor with homework and handle all the household stuff that requires a brain....

That's the latest! I promise the next blog will be more upbeat. I will explain why you can call me George Bailey.

I want you all to know how blessed we (Faron, Connor, and I) feel. My cancer took a turn for the extremely serious five years ago. And yet, here I am. I have met some phenomenal folks in waiting rooms over the last five years. I have had the opportunity to share my faith in a way I could never have done without having cancer. Due to my being on disability, I am able to support my family in ways I could not do while working. In fact, Connor and I have been reading the Bible together and I am able to share some of the insights I have gained from previous Bible studies.

I appreciate all the prayers and support. We know that God answers prayers in His will and Jesus' name.

One last thing - I welcome and appreciate the comments you guys leave. You need to know that I have it set such that I have to moderate or "approve" the comments (you would not believe how many anonymous people out there try to use this blog to advertise their own businesses). Therefore, they might not show up for several days. Please don't get discouraged!

Much love! Kelli

MRI Adventures

Recap: Due to the paralysis on the left side of my face, my doc scheduled me for an MRI on my brain to be sure nothing cancer-related is going on. I have several tips in this blog for stuff in general and things to pass along in case you know anyone who will be going to MD Anderson.

TIP #1: Check your schedule carefully! When I first looked at my schedule and saw 9:30 check-in and 10:00 MRI, I just naturally assumed AM! Turns out, my appointment was for PM! Yes! They actually schedule those things through 10 pm. Chemo can be scheduled that late as well. Who would have thought! I asked the nurse if they had patients show up for morning appointments who really have evening appointments and she said "All the time - and they are not happy folks!"

TIP#2: If you know anyone going to MD, have them sign up for the website. It is https://my.mdanderson.org and it is a patient's personal webpage. Patients can see lab results and doctor notes (because we rarely remember all the information when we are in front of the doctor) and their schedule. Patients can also email their clinical team questions or reschedule appointments, etc. This is how I realized my schedule was PM - I had requested a change and was looking at my schedule to see if the change had been made. When I saw the PM, I emailed my scheduler to verify. TRUST ME - this is much better than calling because no one ever answers their phone down there.

My scheduler said they are booked solid due to the holidays and begged me not so skip my appointment (she knows how I am). So, Faron and I went.

When we were in the waiting room last night, I made a new friend. A five year old named DOT was waiting with her dad for her brother to finish his brain MRI. His name is Josh and he is now doing well at 11 years old, but three years ago they discovered his cancer and the outlook seemed bleak. Now Josh is preparing to run a 3K in January and is just going for check-ups every six months. PRAISE JESUS! Dot even colored a picture for me!

While they were prepping me for the MRI, they had a hard time getting the IV into my arm. I can almost tell now based on the demeanor of the nurse how it is going to go. If they are afraid of hurting you - you are in for it! I kept telling her to go ahead and make the band tighter around my arm to make the veins pop, but she said she didn't want to hurt me (oh know!). She got the IV in ok, but then had to wiggle it and I started having a reaction.

TIP #3: NEVER get an IV put in without some cold (ice cold) water with you. If you start feeling nauseated at all, have someone take off your shoes and socks, place a cold washrag around your neck and on your forehead, and make them drop your chair so you are lying back. Timing (for me anyway) is important - otherwise I will throw up. Ask me how I know.

At MD Anderson, they will not let the same person stick you more than once. The second time I got the head nurse and I could tell we would have IV success because she cared less about hurting me than getting the IV in. The only problem is that we had to use my hand and hands are sensitive. SHe put a tight band around my forearm, popped up the vein and held on tight as she slid the IV in. It HURT and I tried to be still and Faron left because he doesn't like me being in pain. But she got that sucker in fast. Although my hand was very sore and sensitive, I started feeling relief from the nausea. I HATE nausea and when I feel relief from it, it is RELIEF. The only thing going through my head was "THANK YOU JESUS!" over and over again.

(P.S - I usually pray before I have an IV put in and I forgot to pray this time)

The MRI itself was no big deal. The only strange thing (for me) is that there were a few times I started feeling a little panicky. Closed in medical equipment has never bothered me, so I think I was just reacting to being tired (my bedtime is 9 pm), having the IV troubles, and being in the nausea stage of my chemo cycle. However, everything went OK.

Once I got through, I had to wonder if someone didn't slip something in my IV! I could not complete a sentence. I had a thought, then lost the thought, then couldn't think of the right words again. IT was very scary. Faron and I could barely have a conversation on the way home. He would have to finish my sentences for me so we could communicate. For me it was definitely scary.

Now we just hope that we DON'T hear from my doctor. No news is good news. I have 2 more chemo treatments for this cycle, then we go through the CT testing the first week of January to see if tumors are shrinking, then I see my doctor again - unless he sees something on the MRI and needs to see me earlier.

That's it - you are all caught up!

Hope everyone has a Very Merry Christmas and Happy New Year!!

To my brother in Korea - keep warm and keep your head down!

Love to all! Kelli

UPDATE: Doc just called. There is something at the base of my brain. Have a brain and spine consult Monday at noon before chemo. Will keep you posted

Random Thoughts

There have been a couple of email and facebook "conversations" I have been involved in recently that are driving this blog. If I offend anyone, I am truly sorry and I hope these musings are received in the spirit in which they were written. It is hard to truly convey emotional thoughts in a one dimensional medium for those of us who are not writers!

It seems to me that whenever someone famous battles with cancer we hear the words "courageous" and "brave" in most of the media coverage. There was a People magazine story detailing Elizabeth Edwards' Brave battle and an ABC story about her Courageous battle. Same thing with Michael Douglas.

As a current cancer warrior, I find those descriptions odd. I suppose if you are close to someone going through the battle - I definitely agree about the battle part - it may seem that way, but I would disagree. The men and women in our armed forces would be described as courageous and brave because they volunteer to put their lives on the line for others. They risk leaving a hole in their families to protect our freedom and our way of life. They volunteer to face uncertainty and to risk their lives for their fellow soldiers. They have a pretty good idea they will probably face death when they sign up. That is brave and courageous.

My brother - serving another tour overseas - is brave and courageous.

I am not. In no way did I volunteer to get cancer to further or protect a worthy cause. I absolutely did not chance leaving a hole in my family to further cancer research or anything like that. This cancer mess is clearly against my will.

I would describe anyone fighting cancer as someone with great stamina and perseverance. I suppose stamina and perseverance aren't particularly moving adjectives, but I feel it demeans bravery and courage when they are used to describe a cancer fight. There is nothing brave or courageous about putting up with all the side effects to fight for your life. What else are you going to do? There is definitely stamina and perseverance! It takes both to keep going back again and again, knowing what you are in for!

Maybe some people think it is brave to face certain death (as many cancer patients do) without showing fear. In that case, I would propose that everyone is brave because - guess what? We are all facing certain death, but we don't run around looking scared.

I take that back - I sometimes feel brave when I wander out in public with no hair and a face that doesn't work, but that's a personal issue!

What I am about to share next will definitely get some people riled up, especially if you are close to a victim of a serious crime.The second topic I want to ramble about is why God allows pain, suffering, and death. It is so hard to stomach the news anymore, especially here in Houston where rape, murder, and child abuse take up most of the newscast. WHY?

I really can't speak for God on this issue, but I have some ideas that give me a peace about it. (Yes - peace).

I was listening to a sermon years ago, and I am sorry I do not remember the speaker (maybe someone out there can help me out with that). The idea is that we would think it very strange if someone showed up on an airplane flight and started decorating their seat with family photos, brought along their television, brought their favorite pillow and blanket, etc. Why would we think that strange? Because we all know that an airplane flight is temporary. How crazy would we be to spend so much wasted time for such a short journey? See where I am headed?

We spend almost all of our time on earth as if this were the final destination rather than a journey through a physical God-made creation. I am clearly as guilty as the next person as I am reminded every time we move (why do we need all this stuff??!!)

SO keep in mind as you keep reading that the main idea behind the rest of my thoughts are that this short amount of time we spend here is truly temporary.

The book of John has some reminders in there. John 15:19 "...As it is, you do not belong to the world..."

John 16:33 "I have told you these things so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

To me, those verses are a reminder that this reality we are living in is temporary. Whatever our problems, our horrors, our grief - only temporary.

Furthermore, to me, God seems to feel we need to experience pain. Why would such a loving God allow pain?

I can only reconcile a loving God with allowing pain if the pain is temporary and necessary for a MUCH GREATER joy later.

John 16:21-22 "A woman giving birth to a child has pain because her time has come; but when her baby is born she forgets the anguish because of her joy...Now is your time of grief, but I will see you again and you will rejoice, and no one will take away your joy." NO ONE WILL TAKE AWAY YOUR JOY. This passage reminds me that the joy is definitely coming and will be permanent (for followers of Christ).

My OWN PERSONAL thinking on that is that God allows us to experience pain so we will have some INKLING of what eternity will be like without God in it. I imagine that the grief we feel when a loved one dies is NOTHING compared to the grief of eternity without any love in it at all. That the horror we feel when unspeakable acts are committed are NOTHING compared to the horror we will feel in an eternity without a loving God in charge. Of course, none of this would be necessary if sin were not in the (temporary) world, but it is.

We all know how we are. When things are going well, we tend to forget about God somewhat - we put him on the back burner. Ok, maybe you don't, but unfortunately I do. I find myself in constant communication with God when I am feeling my worse. When I feel so bad all I can do is breathe, I am in CONSTANT prayer without a thought for ANYTHING ELSE. When I feel great, I give God the credit and I rejoice, but I also rejoin this earthly life with its earthly demands. I am not saying there is anything wrong with that, but simply we are typically closer to God when pain is involved (at least that's how I am).

The pain does not even have to be our own pain, but can be the pain of those we love as well. I know I am personally drawn to God in prayer when I focus on the challenges faced by other people I know - don't we all lift others up in prayer? We also lift up prayers of rejoicing and praise to God when something works out well. However, the prayers of rejoicing typically follow some time of challenge.

I personally think this is why so many rich and famous celebs have such a hard time with their personal and spiritual lives (and by spiritual, I mean truly spiritual and not "new age" spiritual, Oprah). I think when you "don't need God", you have a hard time in your relationship with Him!

I have considered that God allows the evil to save us. I would also submit that those who are the most passionate in their love for the Lord are often people who have seen the evil up close - maybe not in their own lives, but in the tragedy of life. The volunteers who serve for the red cross, or doctors without borders, or any number of other charities, churches, and organizations that minister to the poor and suffering daily.

I imagine a special place in heaven for the innocents who suffer that others may be saved.

"Now is your time of grief (temporary), but I will see you again and you will rejoice, and no one will take away your joy (permanent)." Thank You, Jesus!

Another though I have is of God the Father doing what is best for my soul - not my body or my family - but my soul. Suppose God knows that there will be an event in my life that will truly test my faith or (God forbid) result in my "falling from His Grace." Would it not be an act of love to take me now?

Maybe that sounds like an uncaring God to you, but when I think of how temporary life is here and how high the stakes are for ETERNITY, I think God would let anyone suffer (temporary!) to save souls (forever!).

These thoughts from a chemo-addled brain on a lack of sleep.

Love to you all. May you feel the presence of God daily.

Kelli

December 6 Appointment

I couldn't think of anything original to title this blog...so there you go.

My visit to the doc went just fine yesterday. Kristi took me down there a little early so that MAYBE the 27.29 test results would be ready by the time I got called in to see the doctor. The 27.29 is a protein in my blood that has historically risen/dropped as my cancer has become more/less active. If it is on the rise, I pretty much know what's in store for me. If it drops, we celebrate.

As luck would have it, I got called into his office EARLY (how often does that happen??) so the results were not in.

He had a fellow tagging along that day, so I got to explain my (cancer) life story for the millionth time. The way it works is the nurse calls you back, takes your vitals, and then goes over a big list of questions. Then the fellow comes in and acts like the doctor, only the fellow knows nothing about you or your history, so they ask LOTS of questions. This time I finally asked the difference between a fellow, an intern, and a resident (you can tell I don't watch those kinds of dramas on t.v.). She explained that after 4 years of med school, you do 3-7 years of residency (the first year of residency you are an intern). Then if you want to become a specialist, you become a fellow and follow someone like Dr. T. around. I asked her when she started making some money and she laughed and asked "What's that?"

Because she was so personable and understanding, I fully answered her questions. I usually give the tag-alongs fairly short and to the point answers. Then they go out and confer with the doctor. Only when my doctor comes in do I open up and spill everything because I figure it has been a big waste of my time until he shows up.

He was most concerned about my palsy. Faron and I both noticed it last Thursday. I could feel it when I was brushing my teeth and he noticed it when I smiled. I had Bell's Palsy the spring of my sophomore year of college. The entire left side of my face quit working and my left eye drooped. It isn't that your face is numb - the muscles just don't work due to a nerve issue, but you can feel that they aren't working. Very weird sensation. Terri and Hillary (college buddies) would do all kinds of stupid things to make me laugh because I looked so funny. I was their entertainment until it went away.

Anyway, I just figured that's what it was, but Doctor T. said no - he noticed it on my last visit 5 weeks ago. I feel like it has gotten much better than it was last Thursday, but it is clearly worse that it was 5 weeks ago if I hadn't noticed it.

So....we are going to do another brain scan Dec. 16 to check the nerves leading to my left eye and the left side of my face for any signs of cancer. With all this testing, I fully expect to be glowing in the dark soon. Call me Rudolph.

I have another CT scan scheduled for the first week of January and will see the Doc after that (unless something shows up on the brain scan). I have no idea how much longer I will be on this chemo. The side effects are not good and the neuropathy (nerve damage) I am having could be permanent. I can no longer feel the tips of my fingers. I haven't felt my feet in weeks.

If the CT scan comes back showing my tumors are shrinking, he's going to have a hard time talking me into quitting - no matter what.

Oh, yeah, I haven't mentioned the physical therapy thing. Remember that the neurologist referred me to physical therapy to help with the falling (due in part to the neuropathy)? I went the first day and the therapist had me do all kinds of strength and balance and endurance tests to get a baseline. Then she said she wanted me to come in THREE TIMES A WEEK for therapy. I told her I was thinking maybe ONE day - maybe. She insisted on two days and I said OK. Then I went home and thought about my mental health and called back and canceled all my appointments. I just could not wrap my mind around driving down there more than I am now.

Besides, I can't imagine what they could possibly do to help me. I am clearly helping them with my insurance money! When I told Dr. T. what I did he said "Good for you!"

SO now you are up to date.

I hope you all enjoy the holidays and remember the REASON for the SEASON. It certainly gives me Peace!

Love, Kelli

A Personal God

I have a young sister-in-Christ who says "if it's weird, it's God!" The idea is that there is no such thing as coincidence, especially the kind that gives you goosebumps. Those are personal encounters with a personal God - a God who knows what you are going through and is active in your life (if you will only let Him in).

I don't usually talk about our finances with anyone, much less in this very public arena, but I have something to share about God so I will put my pride aside and let God have the glory He so richly deserves.

As many of you are aware, our family has moved quite a few times over the course of our marriage. The joke is that we don't live anywhere longer than 3 years and we love to move up and down highway 59 (between Portland and Houston). The last move we made was across Lake Houston so Connor could attend a smaller schools rather than the mega-schools across the lake. That move really got us as we made double house payments for nine months. That was added onto previous debt from a business venture and I think you get the picture.

The other issue is health insurance. The district in which I teach has always offered 2 choices for medical insurance. I have (for obvious reasons) chosen the higher cost option with no lifetime maximum limit. However, it costs significantly more.

I have been on medical disability since October. As my regular salary has run out and I am now on a reduced liability income, we have certainly been tightening our belts around here. Things are fine - PRAISE GOD - but there were two things that I just couldn't figure out how we were going to pay for.

One of them was the outstanding bill to MD Anderson. I have a payment plan for all my previous medical bills up through this year, with the understanding that we would pay off the new bills as they arose. I have reached my maximum out-of-pocket expense (after one month!), and have paid some towards that bill, but really had no idea how I would pay the rest.

Here is the part where I start crying for lots of reasons. The Thursday before thanksgiving (2 weeks ago), a friend of mine and fellow teacher at Humble said I needed to go to PLC as the staff had a surprise for me. Wednesdays and Thursdays are REALLY bad days for me, but she was insistent and I went. At first I didn't really notice the hats. Quite a few people were wearing cute purple baseball caps. It wasn't until Tanya walked up to me wearing her cap that I realized what the logo said.

All the caps read "Wildcats for Kelli".

They had had a fundraiser for me such that they all purchased these caps and the proceeds went to me. I am still so humbled by the whole things I can barely write this. Melanie and Shirley handed me a plant that was full of the money people had donated. Melanie folded some of the money into flowers, Lori folded some if it into hearts, and some of it was tucked into little money pockets. They said they had no idea how much money was there.

When I got home and counted it, IT WAS JUST ENOUGH MONEY TO PAY THE REMAINDER OF MY MEDICAL BILL with $33 left over. If you don't have chills, there is something wrong with you. God stepped into my life and used the beautiful people at Humble to provide for us just what we needed. This was no coincidence - this was GOD and thank God for Melanie and Shirley who were His Hands and Feet. I love you so much, my dear sisters! To the faculty and staff at Humble High school as well as the other teachers from other schools, you have blessed me beyond measure. To you this may seem like a friendly gesture, but for us it is physical proof of a spiritual and loving God.

But wait, there's more.

We have been talking with Connor about having a lean Christmas this year - one of this times when your presence is your presents. We normally go out and support a needy family for Christmas, but I find myself being choosy with the Salvation Army Angel Tree this year. And I am not as free with the dollars when I hear the bells. I am not proud to be sharing any of this with you, but all of those things would result in increased debt for us this year.

Anyway, Faron was thinking maybe we could get Connor something for Christmas that would support his new business. Connor has become serious about photography and he started a business - check out www.connorjamesphotography.com. He plans to add portraits and landscapes, but he needs some more equipment.

Faron has been shopping and shopping trying to find the lowest price on this equipment. It is kind of an unspoken idea within our family that I might never be able to work again. I am extremely dizzy all the time now, nauseated most of the time, and just plain hurt sometimes. Faron is not one to sit around and wait for disaster to strike, so he is motivated to get Connor's business rolling in case we need to replace all of my income.

Anyway, I tell you all of that to tell you that when I went to Humble to receive my surprise, I also received a card from the folks in the registrar's office, the attendance office, and the counselor's office. The note inside said that these staff members normally participated in an annual Christmas office party where they would buy a gift and then play the trade/steal game. This year they decided to donate the money to me. A quote from the card "Please accept this gift from our hearts. What better way to celebrate the birth of our Lord than by helping a friend."

Two days later, Faron came home and said "This is the best price I can find on the used equipment." Guess what? I handed him the cash right out of the card and said "Go get it." Connor gets a Christmas!

God is living, God is real, and God cares. God will use your generosity to change someone's life and to lift them up in His spirit. I know we all go through periods where we think, as the group Casting Crowns puts it, "I was sure by now that You would have reached down and wiped our tears away, stepped in and saved the day.But once again, I say "Amen" and it's still raining."

We don't know why we have storms in life. I personally think God is showing us contrast now so we can avoid the ultimate and forever separation from him later, but that is the subject for another blog.

My deepest gratitude for all of the Hand and Feet from Humble who have reminded me that God is right here, right now - not off somewhere busy with other people's problems. You have touched my family in ways you will never know.

May God Bless You All!
Much love!
Kelli