Wednesday, April 29, 2009

Wednesday, April 29, 2009: Sleep Tight

Ever wonder what I mean when I talk about a sleep study? I took this picture when I was at the sleep clinic having my last sleep study. They stick about 20-30 electrodes all over your body (mostly on your head), each of which has a wire running to a recorder that is monitoring your every move, breath, eye movement and thought.

And here is me sleeping again at another sleep study with my CPAP machine. What does a CPAP machine do? It supplies Continuous Positive Air Pressure so my throat muscles don't relax and cut off my breathing. This is what I sleep with every night. No joking! Wonder why I have to take a sleeping pill every night?! Try duct taping a vacuum hose to your face and sleeping. Well, first you have to stick a thumb up each nostril to get the true effect. Then duct tape the vacuum hose to your mouth. But instead of sucking, it's blowing air. Now nighty night, sleep tight!

I realize I sound a bit bitter. I'm in the middle of a bad streak right now with sleeping. I've had this issue for least 10. I've only had the CPAP machine for a couple years but even that doesn't help my tiredness. I've been to the doctor numerous times, had numerous blood tests done and been on numerous pills with no luck. So yes, I'm a little frustrated. Just venting.

On the bright side, Kristi finds masked men attractive!

Monday, April 27, 2009

Monday, April 27, 2009: Brain Farts

I just heard from my nurse - my scan didn't show anything of concern!! I said "so that means" and before I finished my sentence she said "you're just having brain farts". What a lovely image! I just talked to my mom and she said she uses the term "short circuit". I think I like the sound of that better :) Deep down I knew they wouldn't find anything but it sure is nice to have confirmation.

Sunday, April 26, 2009

Sunday, April 26, 2009: No Results Yet

We didn't hear anything Friday about my ct scan. I'm thinking that no news is good news. If they had found anything of concern they would have been in touch by now or at least that is the theory that I'm going with :)

I'm back for chemo tomorrow - end of round 5! My friend Karin is bringing me and I'm looking forward to catching up with her. I was emailing my mom the other day and told her I was excited about hanging out with Karin but I wish it was for coffee and not chemo. As I was thinking about that though I realized that it would probably be a while before we would get together for coffee. We have been trying to but kids schedules and quite often germs get in the way. As much as I don't care for chemo, it does make me take a break from the busyness and just sit. A positive from chemo? Go figure.

I have been growing and struggling lately with my spiritual life. I think I talked in an earlier post about how I hear God calling me and asking me to spend more time with Him. He has been trying harder to get my attention and yet I continue to ignore this request. I want that time of devotions, prayer, reading the bible and just listening for God's voice. I can't seem to fit it into my busy schedule though. How ridiculous is that? God wants to spend time with me and I am too tired to get out of bed early. I'm too busy taking care of the kids and cleaning the house. I'm too busy spending time worrying about things that are out of my control. Every night I go to bed sad because another day has gone by and I didn't take time to visit with God. I know without a doubt that if I would do this it would change my life.

Our church is doing a series on worship right now. Today and last week were a bit uncomfortable for me and I'm thinking for many others as well. There was praying out loud and hands flying and dancing and I was looking for the nearest exit! I have always admired the people who don't care what others think when they are praising God. They are there to praise God and you can see it in their eyes and their actions. I have tried. I want to raise my hand and yet I'm paralyzed in fear. I want to close my eyes but I'm afraid of what others will think. I want to dance and celebrate. I can't do that in my own living room let alone church! I am so self conscious and so concerned about what others think.

I've been to a couple concerts with my sister and she will grab my hands and swing them in the air to get me moving. She sings, dances, prays out loud and loves praising God. That is an area that we are so opposite. I have to admit I'm jealous. She is dancing and having a great time and I'm thinking "we paid money for these seats, why aren't we sitting in them?".

I'm not sure where I am going with this. I think it's just things that have been going through my mind and I'm tired of them bouncing around in there so I'm letting it go here. I want to be free of my fear of what people think. I want to sing and dance and be silly and have fun. At this point it would probably require a few strong drinks! I think an even better idea would be for the Holy Spirit to move in me. I think I mentioned in a previous post the verse . . . "The spirit is willing, but the body is weak" which is from Matthew 26:41. My body is so weak and yet I know if I prayed earnestly that the spirit would overcome my weakness.

I think deep down I am afraid to pray this prayer. Just a few years ago I wanted to experience a closer relationship with God so I prayed that He would break me. Cancer definitely broke me! I'm afraid of the changes this prayer may bring. I've felt a call to speak to people about my experience with cancer. I can't imagine God calling me to be a public speaker! Me?! I do have an amazing story to tell though. I know God healed me of my cancer. I was always encouraged when I talked to cancer survivors and now I can be the survivor talking to people that are starting the journey that I am close to ending. I'm so afraid that if I pray for these changes that opportunities to speak may come my way. I learned so much when I talked at Grand Haven Christian schools. I learned a lot and know things that I would do differently and yet am scared to death of the thought of doing this. But, God doesn't call the equipped, He equips the called.

So, now the question is do I post this entry? I guess if you are reading it then I must have :) It is such good therapy for me to type out my struggles and frustrations. I am reminded by others that I am not alone. It's so much easier to talk through the blog than in person. It's so easy to be real here - sometimes too easy!

Well, it's getting late and everyone is sleeping here so I guess I should call it a night. I know as soon as this is posted the prayers will be starting. What a journey this has been and yet at the same time it feels as if it is only beginning .
. . .

Thursday, April 23, 2009

Thursday, April 23, 2009: Out Of Touch

I'm feeling rather detached from the world. To make a long, horribly painful, frustrating, make you want to knock your head into the wall kind of story short . . . our phone has been disconnected and we are not able to have it connected until next week Friday. On top of this, my laptop is in for repairs and our main computer was having "issues" tonight. I didn't realize how much I relied on our phone/computer!

For those of you that need to reach us during the next week you may either send us an email or call my cell phone. I would rather not put my cell number on the blog - if you need to call me send an email (which I check multiple times during the day) and I will email you back with the number. This being said, I have very limited minutes on my cell phone and once I reach them I think we pay a ridiculous amount per minute. So, email will be the best way to contact us if possible.

On another note, I had a ct scan on my head this morning. Yup, my head. I have been verbally dyslexic and forgetful. I've often referred to this as "chemo brain". I had this during my chemo in 2007 as well so I'm not too worried about it. When I told my doctor about it Monday he said he wasn't too concerned but wanted to have a ct scan done just to be on the safe side.

After blowing a vein in one arm and hitting scar tissue in the other arm, the technician was finally able to put the iv in for the dye that they use. As it was running through my veins I could feel it going from head to toe and could taste it. Very gross. I was laying there thinking "as if my body wasn't toxic enough already now I'm having dye pumped through my veins!"

Combine the ct scan problems with the phone problems and let's just say it was a frustrating day. I did have a surprise visit from a friend this afternoon that was just what I needed (thanks Heidi!!). I could sit and whine and complain about all the issues I've had today but what good would that do me? It would just make me grumpier. God has been good to me today and has taken all these troubles off my shoulders and said "life is what you make it". That is so true. I could wallow in self pity or I can cast my burdens on Him. I won't lie and say I haven't had my share of pity parties but right now I'm enjoying the peace that God has given me because I choose to listen to Him and let go.

I will update when I have the results from the scan which may not be until next week. I'm not worried. God already knows the results and that's all I need to know.

Monday, April 20, 2009

Monday, April 20, 2009: Praising God

Kristi's doctor's visit this morning and chemo went "as planned" today. We received great news at the day's end. Kristi's CA125 level dropped again to 20!!!

Sunday, April 19, 2009

Sunday, April 19, 2009: Weak

Seven days without enough time spent with God makes one weak.

I have been struggling with my "God" time. I have read all about the time we should spend with God. I've learned the techniques and I've talked to people who can't live without this time. I want to be like that. I feel like God has been calling to me to spend this time with Him and I'm ashamed to admit that I haven't been listening. Even worse than not listening, I have been ignoring Him.

Matthew 26:41 keeps running through my head "The spirit is willing, but the body is weak." Right now I hear it as "the spirit is willing but the body is weak". I want to change that thinking completely. I've been trying to do this on my own and I can't. So, to the blog I go to tell the world. It's hard to put this out there. I'm admitting one of my biggest struggles. Lately when I've done this though so many people come up to me and say "I struggle with that too". So I know I am not alone. For some reason I just choose to post my flaws so all the world can see :)

This world is falling apart. There is fear everywhere. It can be so overwhelming. Add cancer to the mix and it's not good. When I start thinking about statistics . . . it's not good. I know in my heart that if I would spend more intentional time reading the bible, praying and simply listening to what God has to say it would bless my life so much. The world would still be messed up but I would have that peace from God knowing that even though it seems bad right now, he's got it all under control.

I'm tired of my body being weak - both physically and emotionally. It's time that I stop talking about my need to spend intentional time talking to God and doing it. It's time that I stop focusing on the fact that my body is weak and remember that the spirit is willing. God's willingness will trump my weakness.

Tomorrow we are back to chemo. I want to go to the doctor visit and chemo clinic with no fear. God has already set this day in motion for me. I spend a lot of time simply laying in a recliner while the chemo flows through my veins. This is time that I can whine and complain about or I can use my time wisely and spend that time with God.

Satan has been trying to convince me that now that the cancer is almost behind us that I am no longer special. I'm done listening to him. This is hard for someone with low self esteem to say but "I am special". I was special before I had cancer and I will be special after the cancer is gone. God made me for a special purpose and I am ready to find out what that purpose is.

We meet with my doctor at 9:00 to talk about the treatment plans and then go to the chemo clinic at 10:30. We usually get the CA-125 results later in the afternoon. We will be posting them as soon as we can. Prayer warriors, start your engines!

I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me. Galatians 2:20

Friday, April 17, 2009

April 17, 1993

Monday, April 13, 2009

Monday, April 13, 2009: Plans

You know those days where nothing seems to go according to plan? Today has been one of those days! I remember living life day to day and minute by minute during 2007. We never knew when I may need a trip to the emergency room.

Today I put cancer "on hold" because my family needed me. I was up most of the night with Emily. She coughed and coughed and coughed some more. I think she was finally in a deep sleep around 5:00 AM and she sounded raspy.

After getting Ashley and Nathan off to the bus stop I called my doctor to cancel my appointment and then called Emily's doctor to get her in. I'm glad I brought her in. She has bronchitis but we caught it early. She is on antibiotics and will hopefully be feeling better soon.

My nurse completely understood and asked if I wanted to just postpone the doctor visit and chemo another week. Ummmm, didn't need to think twice about that! After looking ahead at the calendar I noticed that now my "off" week after the next round of chemo is the week of Tulip Time and also Brian's birthday. Also now I will feel good tomorrow for Emily's birthday! Plus this Friday is our 16th wedding anniversary. God took care of all the little details.

Brian is feeling much better this afternoon. He ate breakfast this morning and finally it settled in his stomach rather than, well, as Brian put it earlier "you know". He is still tired but doing so much better. He even watched Emily this afternoon while I took a three hour nap! While he was sick I realized just how much he does around the house. I have always known he did a lot but it is true that you don't realize what you've got until it's gone.

I'm looking forward to a normal, chemo free week celebrating birthdays and anniversaries and just enjoying life.

Sunday, April 12, 2009

Sunday, April 12, 2009: Still Yuckin'

First of all, Happy Easter!!

Well, Emily is still coughing nonstop and I am still not feeling well either. I've had the flu since I got home from work Thursday afternoon. I've slept most of the weekend...and when I wasn't sleeping, know.

As of now the plan for tomorrow is that Kristi will go in to GR for her normally scheduled doctor's visit. We're going to wait until morning to make the final call but right now we're thinking that we won't go in for chemo. Tomorrow is supposed to be the "big day" and Kristi normally gets knocked down for that. So we can't have her driving herself to chemo but I can't go if I still have the flu. So we'll wait and see how I feel in the morning. The problem isn't necessarily me - it's exposing Kristi and all the other chemo patients to my germs.

So prayers for tomorrow would be appreciated. Thanks!

Thankfully Nathan feels better and Ashley is still healthy! The kids and I had a good day celebrating Easter (and Emily's birthday!) with both my side and Brian's side of the family. Long day, lots of food, lots of travel, lots of candy and lots of fun. Unfortunately Brian wasn't up to going to either party so he spent most the day in bed with Papi (for those of you who don't know, Papi is our dog).

Brian is so frustrated with having the flu. As soon as he starts feeling a little bit better he tries to do stuff and then overdoes it and is miserable again. I could arrange for someone else to drive me tomorrow for chemo but then both he and I would be feeling sick and one sick person at a time is more than enough. I have to say I'm more than happy to delay chemo a bit :) I'm a bit anxious to get my new number but at the same time dreading the side effects as they have been harder with each round I go through. Also, Emily is turning 5 on Tuesday and I was really bummed about the fact that I would probably be feeling yucky on her birthday.

Thank you for your prayers for health and patience. Please also pray that no "lumps or bumps" will be found tomorrow during my physical. I have a big list of questions for my doctor as well. I have had a few new side effects with this last round that I need to talk to him about. Now that I've hit "normal" we will make more of a plan regarding the rest of my treatment. They would like me to go two more rounds (four more visits) but it depends on how I tolerate the chemo and how my number is doing.

Time for me to turn in now. Please say an extra prayer that Emily's cough will let up so that she can sleep. She is in a fitful sleep right now and coughs every few minutes :(

Saturday, April 11, 2009

New e-mail

We are changing our e-mail to Our old one will still be active for about another week or so.

Friday, April 10, 2009

Friday, April 10, 2009: Germs

Aaaaahhhh!!! Our house has been invaded by germs! Nathan and Emily both have a cold and a yucky cough that seems to kick into high gear at bedtime. Brian came down with a flu bug yesterday afternoon. He's extremely tired and achy and his stomach is doing flip flops. He had today off from work but unfortunately he had to spend the entire day in bed :(

Ashley is done with all her sleepovers and we're happy to have her home again! In the past 5 days she has slept in Spring Lake, Grandville and Grand Rapids! We always made the trips driving her into something fun to do (like visit with friends, see a movie, go to one of my brothers shows and out to dinner). It's been a fun week.

I am scheduled for chemo this Monday so I'm praying that I will avoid all these germs that are going around the house. I bought the L-Glutamine this week and it has been helping. I couldn't find the powder so I bought the capsules. My feet are only a little bit numb now and I don't have any pain in them. My fingers are fine too. My tongue has even improved a little bit. Food still doesn't taste very good but at least it isn't awful anymore! I'm guessing these side effects will come back with this next round of chemo but hopefully the L-Glutamine will help with it. Thank you to the blogger that left that advice!

Did you notice the change Brian made to the title of the blog? You can hardly see the "with cancer" anymore - love it!!

Sunday, April 5, 2009

Sunday, April 5, 2009: Spring Break

Is there anyone else sticking around in sunny Michigan for spring break? :) I've never really had the desire to vacation during spring break - it's just too busy with everyone else going at the same time. I'm content to just enjoy a slower pace at home. I'd enjoy it even more if it didn't snow!

If I stayed on schedule with chemo then tomorrow would be my "big" chemo day. Even though we don't have vacation plans this week I still wanted to be feeling good so I can spend time with my kids (instead of being in bed). I will be going for chemo again on the 13th. This last round of chemo hit me much harder than the first three. I think this is fairly common with the 4th round of chemo. I'm glad that my body has an extra week to recover before I go back again.

I've been dealing with the neuropathy in my hands and feet (I've bought the L-Glutamine and am just waiting for my doctors okay - thanks to whoever the anonymous person was that left that tip!). My skin is very sensitive to hot and cold. This most annoying side effect though is definitely my mouth. My teeth seem to be disintegrating! I've got an appointment with the dentist tomorrow to find out what is going on. My tongue is numb all the time and food tastes terrible. I got a cherry arctic rush from Dairy Queen the other day and I couldn't even drink more than a couple sips! I am really hoping that this does not become a permanent side effect. I had neuropathy in my feet with my first chemo which thankfully went away after chemo was done. It is possible that the chemo can do permanent damage to the nerves. I can only imagine what other damage it is doing. That is something we will talk about with my doctor at our next visit. He would like to see me do two rounds past normal depending on how I handle the chemo.

Thankfully other than a couple sniffles we are all healthy. I wish JCI had spring break too so Brian could be home with us this week. I will be kept busy being Ashley's chauffeur. She was invited by three different people for a sleepover and they are all out of town. Who would have known that my little girl who wouldn't say two words in preschool would turn out to be such a social girl?!

That's about it. Not much to report these days - for which we are very thankful! :)