Friday, August 31, 2007
Not much to report on today. Kristi is generally feeling pretty good...tired a lot. I've been a little down lately, but overall doing OK. We're looking forward to another weekend. We have more exciting features coming to the blog as soon as I figure out how to make them work. So stay tuned! :) Yes, I'm a nerd!
Wednesday, August 29, 2007
Kristi had a good day. Her nausea is almost completely gone and she's just down to feeling a little fatigued. Overall, she's doing good. Well, we're all tired so early bed times tonight!
Nathan playing in the germ pit
That's about as close as Ashley will ever get to riding a wave runner
Even Emily got into the fun!
Tuesday, August 28, 2007
All the kids are in bed so I'm going to keep this short and go hang out with my super-husband.
Monday, August 27, 2007
The chemo itself went longer than anticipated...probably because it was the first time with this new dosage (we're guessing). We're hoping in the future we can get in and out quicker than we did today. We didn't get home until 2:30 - and it was supposed to be a "quick one". The chemo is hitting Kristi harder than we thought also. Kristi slept most of the afternoon after getting home and is now back in bed after joining us briefly for dinner (Kristi drank a Carnation as the rest of us ate a delicious dinner complements of the Durnwalds!!). She is complaining of fatigue and nausea. She is also feeling quite overwhelmed at the thought of doing this once a week, and thus her mood turned quite down tonight. Our next chemo date is next week Tuesday - the kids' first day of school. Her nurse didn't want to change the date so we have to go in for chemo on the kids' first day back. That didn't sit too well with Kristi.
We have the following prayer requests:
* That Kristi bounces back quickly
* That the nausea and fatigue doesn't last
* That her mood picks up and this feeling of being overwhelmed is relieved
Sunday, August 26, 2007
For tomorrow, we have the following prayer requests:
* That we have safe driving to and from GR
* That this new chemo doesn't knock Kristi down too hard
* That this new chemo kills the cancer
* Kristi has been struggling to sleep lately. Please pray that her anxiety and restlessness goes away and she can get a good night's sleep
* Prayer of thanks for the nice time we've been having as a family over the past couple of weeks.
Friday, August 24, 2007
Wednesday, August 22, 2007
Although I was anxious to get this round behind me, I'm glad to have a plan, rather than wait and see. I felt like everything else was on hold waiting for the doctors office to call. Now I can visit with friends, do some back-to-school shopping (aaaahhhh!!!) and have some fun this weekend!
I will not be having chemo today because my doctors office is still waiting for the results from the blood work I had this morning. If my counts are good then I will be going in tomorrow morning.
Brian has been in contact with U of M and we will be sending all my medical records from the doctors office to them. They will review them and meet with us to discuss their opinion. We are anxious to get a second opinion regarding my treatment.
Although we were originally disappointed that the insurance did not cover the clinic in Chicago, we now understand why that door was closed. After the week of tests at this clinic they would have kept me for treatment. I'm not ready to stay in Chicago for months! If my cancer would progress to the point that this is necessary then we will do everything in our power to get it covered by insurance so that I could go.
Right now we will start this chemo and wait to see what U of M has to say about this treatment. I am anxious to hear what they will have to say but I'm sure it won't be a very fast process. As with everything else in our lives these days, we'll have to wait and see.
I am not worried about my cancer. I still have no doubts I will kick it. Considering I am typically a worrywart, this peace can only be coming from God. He still has a lot to teach us about life. So for now we will continue to learn about patience, trust and listening to what God has to say as we wait and pray.
Tuesday, August 21, 2007
It's a frustrating process. I don't understand why they make these things so complicated. It's all about the dollars. We're both pretty disappointed with the news so please pray that our spirits are picked up again soon.
"The heart of man plans his way, but the LORD establishes his steps." Proverbs 16:9
Monday, August 20, 2007
First, her counts were too low today for chemo. Her platelet level is currently at 52,000. As we mentioned the other day, her doctor is changing the type of chemo to Hycamtin (generic equivalent is Topotecan HC1). This is normally used as a second line chemotherapy for relapse, but since Kristi's body became resistant to her first line chemo they decided to make a change now. So after we left the doctor's office today we were thinking probably Wednesday for chemo (assuming her numbers go up by then). But wait...
The other reason chemo is on hold is...well...I made some phone calls today and talked with a specialist out of the Cancer Treatment Centers of America in Chicago. A friend informed me of this center. After talking with this specialist, she was a little surprised at some of the decisions that have been made in our case, so she is going to refer us to Dr. Williams - one of the nation's best when it comes to ovarian cancer. She took all of our information and we're going to try to get approved to go to Chicago to see Dr. Williams for a 5 day exam. They will inspect every inch of Kristi's body for cancer. They not only will check her over physically, they will check her mental health, her diet, everything! It will be a pretty intense 5 days it sounded like when talking to this specialist. The main objective is to find out if they agree with her current treatment plan. If they agree, then we proceed. BUT, it definitely sounds like they have some concerns over our current path.
I really feel God kept Kristi's counts down for a reason. Ordinarily Kristi's counts would have shot up by now. Because they didn't, I was able to make some phone calls and we're going for a second opinion (hopefully). If we would have started her new chemo today, we would not have been allowed to see this specialist for months- that's just how it works. Too many strange coincidences happened for this to be just "good luck". Anyway, it's a good time for us to call a "time out", take a step back, and re-evaluate what's going on...and this specialist from the Cancer Center agreed. After reading Dr. Williams bio on their website it was a no-brainer: "When it comes to lending her patients an empathetic ear, Dr. Williams takes a compassionate “hands-on” approach, kneeling down to speak with patients who are seated or in a wheelchair or offering to join them in prayer if asked". You can read the rest of her bio at http://www.cancercenter.com/midwestern-hospital/physicians/sybilann-williams.cfm.
So that's where we stand right now. Please pray that God is with everyone making decisions over the next few days and if we're meant to go to Chicago that they will come to that decision. If we don't qualify, that means the current path we're on is the right one. Thanks!
"And I will love you forever; truly, I will love you in righteousness and in right judging, in care and in mercies." Hosea 2:19
Sunday, August 19, 2007
I talked to my nurse on Friday before we left. My platelet count dropped to 24,000 (only 1000 points) so she gave me the green light to go camping as long as I promised to be careful. We are meeting with the doctor tomorrow morning. They will do a blood test there and if my counts are high enough I will go to the clinic for chemo.
We will be asking the doctor a few questions tomorrow regarding my new treatment. We are hoping to be able to do some of the chemo treatments in the clinic in Holland. Also, we are wondering how soon we can have the surgery to reverse my colostomy. I would like them to take a look around and make sure there really is cancer left in me before we start going through more rounds of chemo.
Please keep this appointment in your prayers. We want to make sure that we make the right decisions. Please also pray that my counts are high enough tomorrow so that we can get another round of chemo behind us.
Cute at 9:00 in the morning, but not at 4:30AM!!
Nathan chillin by the camp fire
Friday, August 17, 2007
Thursday, August 16, 2007
Effectively this is not considered a drop. So, we will meet with Kristi's oncologist Monday morning to get all the details of the new plan. What we do know is that this current "potion" of chemo isn't working. We know that they are going to change the magic potion. She will start going in once a week for chemo, starting on Tuesday. The actual chemo administration time will only be one hour (as compared to 4). Apparently the side effects are less severe with this potion. As a man, and an engineer, it's hard for me to accept what I perceive as this "trial and error" approach. It's hard for me to trust the doctors. After all, it is my wife's life. I often wonder "are they putting in the right stuff?" the chemo is clear so I wonder "is it really chemo?!" "How do they know?" I wonder this every time I see them hanging a new bag. Why would one round (round 6) completely debilitate her while the next round (round 7) hardly affect her?! Am I the only one that wonders this? How can this be? I just have to trust, I guess. That's hard for me. So we'll wait and see what the doctor has to say Monday morning. We have lots of questions for him. A few more thoughts by Kristi...
I was reading a few days ago about how God shows up the most when we are weak. Apparently God has more to say though me and that is why we continue to battle this cancer. I really have felt strongly lately that we are nearing the end of this journey. Looking back at all we've been though makes the few things we need to accomplish yet not seem so overwhelming.
Despite the numbers, I am not worried. I am convinced that I will beat this. God is just making my case unique so there is no doubt that He is the true physician that is healing me.
Please pray for wisdom for my doctor as he makes the decisions regarding my treatment. Pray also for Brian, as you read above, letting people make decisions like this is difficult for him. Also, pray that my platelet count will go up tomorrow. Thank you!!
On another note, my friend Heidi had a great thought. After the Israelites marched around Jericho seven times the walls came tumbling down. I have had seven rounds of chemo now so my CA125 level can come tumbling down!
I am having trouble focusing on anything right now - all I can think about is my numbers, when chemo will be, and things that are out of my control. So on that note, here's some prayer requests:
*that I will be able to let go and focus on the verse "for I know the plans I have made for you"
*the neuropathy in my feet and shins continues to be very annoying
*Brian has been busy at work lately which is good - it keeps his mind from wandering. He has been pretty tired lately though. Pray that his strength and energy will renew as he takes on so much more during my chemo time.
*I'm still tired a lot. Pray that I will have more energy and stay focused so I can get things done before my down time with chemo.
*that my good streak of fairly pain free blood draws will continue tomorrow!
*that we will continue to look for the silver lining when the dark clouds come our way
Wednesday, August 15, 2007
I will know tomorrow afternoon what my CA125 level is and find out if my platelet count is going up or down. We have plans to camp this weekend with our small group and the only thing that could jeopardize me going along would be if my platelet count dropped too much which would require blood draws every day. So I am praying for a low CA125 level and a high platelet count.
I am still tired but I went to bed early last night and slept in this morning. I think it helped. Emily has been a bit of a handful lately which wears me down. I think she is cutting a tooth or at least I hope there is a reason behind her crankiness!
That's all for tonight - we'll post the blood test results tomorrow when we find out. Thanks for the prayers!
Tuesday, August 14, 2007
Monday, August 13, 2007
As of right now, the plan is to have chemo next week Monday as long as my platelet count goes back up. Plans change pretty quickly around here so I'm not really expecting to have chemo Monday. It's a wait and see game from here.
Sorry, having writer's block tonight...can't think of anything else to say.
Sunday, August 12, 2007
As most of you already know, Kristi's sister's husband Eric was diagnosed with Lou Gerrig's disease back in May of this year. Like us, Lori and Eric are accumulating a mountain of bills. Fortunately, we have insurance, as do Lori & Eric. However, as Lori and Eric are also finding out, there are things that insurance doesn’t cover. In Eric’s case, he has to buy special eating utensils so he can eat; he has to get all of his old fillings removed and replaced because his current ones could be toxic; he had to get his deck modified to make it more accessible; the list goes on. Also like us, Lori and Eric are blessed with a very supportive church and family and friends. They have had people already volunteer to do different things for them (like rebuild their deck). The bills still accumulate, however, as surprise expenses hit.
So when Kristi and I started thinking of a "charity" that we could give to, we didn’t have to look very far. The money that is generated by our website will be given to Lori and Eric to help off-set some of their bills. Each time you click on the advertisement on the left hand column of our blog, our blog earns a credit. For instance, we have already generated almost $40 in the first week. Not much, but it will help off-set some of their expenses. We don't have control of what is advertised - they should be "clean" and tailored to our website, but, you never know. So please let us know if you ever see an ad that is inappropriate. Hopefully some of the ads will actually benefit some people reading our blog too!
Some specific prayer requests for this week:
* That we all stay healthy this week
* Kristi goes in for blood work tomorrow. They will probably check her CA125 level later this week too. Please pray boldly for a number around 35
* Pray that whatever the CA125 number comes back as that we will have the wisdom to look to the great Healer for support
* Kristi's neuropathy is getting bad. The tingling has moved all the way up to her knees. You know what it feels like when your feet fall asleep? She has that feeling all the time. This is a side effect of the chemo.
* Her energy level is down. Pray that her energy level goes back up this week.
* Pray that Kristi’s spirits stay high this week as her energy level is down.
P.S. If you’re one of the 20 or 30 people that read my first draft of our blog last night I must apologize. My first draft said something like “we have an exciting announcement to make tomorrow” not thinking that someone might think we were going to say something related to Kristi’s cancer. Kristi thought of that while we were on our date last night. So when we got back I reworded last night’s blog entry to say “we have an exciting announcement to make tomorrow regarding our charity selection.” Sorry for the confusion. If we ever have something to announce regarding Kristi’s cancer we will never leave you hanging like that. It will always be shared right away.
Saturday, August 11, 2007
I also had a great time with my friends wilderness camping in the U.P. near Munising. We camped in the Hiawatha National Forest overlooking Lake Superior. It was absolutely beautiful! We spent 4 days scuba diving and exploring. Our camp sight was at the end of a 5 mile dirt road and we were the only people camping there all weekend (that we know of). I took over 350 pictures so it was hard to pick out only a few, but here are some pictures from my trip.
This was the view looking West from our camp sight
"Thus the heavens and the earth were completed in all their vast array." Genesis 2:1. He did good work indeed, didn't He?!
Nathan & his friend Claudia
So, as you can understand, we've been a little busy and have fallen behind on the blog. Busy times are good!! It's been so busy around here we haven't had time to think about the cancer at all. It's been nice...almost like life is back to what it was last year. We are definitely enjoying the good times! Kristi is feeling great these days - very excited to get this all behind her. Until tomorrow...we have an exciting announcement to make tomorrow regarding our charity selection...don't you love the suspense?!
Thursday, August 9, 2007
Wednesday, August 8, 2007
Brian had an awesome trip. Some of the highlights were scuba diving through a sunken ship and jumping off a 25 foot cliff. He took hundreds of pictures and it looks and sounds like it was beautiful there.
We'll update you more tomorrow night. Right now everyone is exhausted and ready for a good nights sleep. Thank you for all your prayers for safety and a great time - they were answered!!
Monday, August 6, 2007
Last night was quite rough. Emily's cold got worse and to sum it up, neither of us got much sleep. I kept thinking during the night though "joy comes in the morning". My joy came this morning in the form of "grandma to the rescue". My mom came over and took care of Emily so I could get a shower in and get my blood work done. I didn't want to send Emily away because she is very possessive of me these days. Fortunately my mom doesn't mind the germs and the crabbies and Emily was very happy to see her. Both Emily and I took a big nap this afternoon and we're both feeling better.
I talked to Ashley & Nathan tonight and they are having a wonderful time. It was so nice to hear their voices and know that they are doing good. I also talked to Brian for a little bit tonight. They had 80 degree weather and no humidity today - can you imagine? He is having a wonderful time.
I do have some more prayer requests to share:
*My feet have been bothering me and they seem to be getting worse from the neuropathy. They are a little bit numb and I have shooting pains which makes it difficult to sleep at night.
*Speaking of sleeping, I'm not getting a lot of it lately. I have strange dreams and also seem to wake up a lot during the night.
*My mood is still good which can only be from all of your prayers. Thank you!
Well, it sounds like a storm is rolling in so I'd better get off the computer.
Sunday, August 5, 2007
Ashley and Nathan are up North with Brian's parents right now staying at their trailer. Brian talked to Ashley last night and they were having fun with Grandpa & Grandma.
I do have a few prayer requests . . . .
* I have a blood draw tomorrow (routine weekly labs) that I can't say I'm looking forward to because of the pain. Pray that they won't hit any scar tissue and the my counts will be good.
*Please pray that Brian will stay safe and have a good time.
*Ashley was crying when she left on Saturday which broke my heart. I'm sure she is fine now but please send extra prayers out for her and Nathan that they will have lots of fun and not have any home sickness.
*Emily seems to be coming down with a cold tonight. So far it's just a runny nose. She is not the most pleasant little girl when she gets a cold so pray that this will be a small and short lived bug!
*My spirits have been up - please pray that they will continue to do so.
It is so nice to know that there are so many of you out there praying us through this. I think we are starting to near the end of this crazy roller coaster ride. We still have some hills and valleys ahead of us but I think the big ones are behind us!
Saturday, August 4, 2007
So, we remembered the e-mail we got from that person and I looked into it. I found that it is easy to do, and costs us nothing. The way it works is that we get about $0.25 every time someone clicks on the ad. We don't get anything for people logging onto our blog, only when you click on the ad. The ad is small enough where it won't detract from our blog, but yet it will raise a little money that we will give back to a charity. We have a charity in mind, but we need to do some checking first. We'll let you all know when we decide. So that's it, we decided to try it out and see how it works.
We will monitor the contents of the ads. When I signed up, it indicated that the ads would be tailored to the content of our blog. So the ads should primarily be cancer and health care related. If we start seeing and Viagra or other "enlargement pills" ads, we will pull the plug! Our purpose is to be able to raise money to give back, not to offend our readers.
Friday, August 3, 2007
Well, thankfully I am doing rather well with the side effects this round. Although Brian's plans have changed somewhat, he is still able to get away for a few days with his friends. He has arranged all the child care and even an occasional "babysitter" for me.
Although our plans have changed and we often wondered what they would be, God always knew. I have a few prayer requests for our family this weekend:
*Ashley & Nathan will have fun, stay healthy and safe as they travel with family over the weekend
*Emily is staying with a friend of mine and her family for a couple days. Pray that she will also stay healthy, have fun, and behave herself! :)
*That I will continue to get stronger, that my spirits will stay up as Brian is gone and that the nausea (which has been minimal) will end
*That Brian will have a wonderful time with his friends enjoying God's creation. They will be scuba diving, hiking, and boating along Pictured Rocks up North. Pray that they stay safe, healthy and that Brian will be able to not worry about me and enjoy this break.
Thursday, August 2, 2007
She is starting to get a little sad with the kids being gone all the time. Ashley just got back from camp last night and is now gone again for 2 nights at her brother's. When the kids get back from Uncle Kevin's, they go up to my parent's trailer up North (near Traverse City) for 4 nights. Kristi knows the kids are in good hands - she just misses them. Please pray that this doesn't lead to depression - it's a slippery slope and it's easy to get sliding down.
Thanks for the continued prayers!