UnDomestic

Writings of a teachermom, choosing to stay home with her kids, while loathing all domestic responsibilities! In late Aug. 2008, I was diagnosed with Triple Negative breast cancer. After surgery, chemo and radiation, I was given theall clear. However, in the late summer of 2008, I was diagnosed with a brain tumor, which metasticized to other areas.

Friday, October 31, 2008

Loooooooooooong Surgery Day

It is now 5PM and I just got home from the hospital. Cari's surgery was to be at 7AM but she actually went into surgery around 3:30PM (a real bummer). When they checked her platelet count it was below normal, therefore, surgery had to be postponed. They gave her one blood transfusion and then after an hour drew blood to check the count. After another hour we got the results. Results required another transfusion. As always Cari is a trooper but she was very uncomfortable with the pain in her upper back, shoulder area and new pain down her arm. And since she had nothing to eat or drink (especially coffee) she was very hungry and had a bad headache. Her surgery should take about 2 hours and without really having to ask..........your prayers , care and loving thoughts are much appreciated. We pray for a peaceful and restful sleep tonight.

Mary Beth (Cari's Mom)

Wednesday, October 29, 2008

Angels making it happen

More information on the Benefit for the Angel Foundation.
http://www.freewebs.com/eveningofcaring/

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Scared

I finished my radiation on my spine today....yeah!!!! It's actually kinda bitter sweet. I am so happy that I won't be treking back and forth daily for my treatment..and I'm sure my dad, and especially my mom, are happy they don't have to drive me anymore. But my radiation therapists were so nice and fun that I'll miss not seeing them. They really did make the experience so much better than it probably could have been and I am so grateful for that.

Like I said yesterday, I'm scheduled for surgery on Friday. I don't think I ever wrote much about my surgery and time in the hospital when they did the craniotomy. It was very traumatic for me. At one point I seriously thought they were going to send me to the psychiatric ward. Being in ICU with so many people coming in and out of the room just injecting me with stuff for pain and whatever else made me so incredibly scared. And then when they moved me to a regular room, I couldn't get up and do anything, even go to the bathroom, without balling my eyes out. Any kind of change caused me so much anxiety I would just burst into tears. I've NEVER been like that, and it was the scariest thing for me. (okay, I lie. I've burst into tears on several occasions for no good reason...just ask my husband...I'm an emotional girl...but this was totally different) Which is why when the doctors started talking about opening my head again, I immediatly thought, NO WAY. But now, it's really inevitable.

My symptoms have been getting worse. It's ridiculous how fast this cancer grows. I have even more in my spine now. I'm just in disbelief. I should have had my surgery last week, but we were still considering our options and I just wasn't comfortable with it. I couldn't shake off my prior experience. This surgery is supposed to be much easier and less invasive. But that doesn't mean I'm not still just as nervous about the entire process. So please pray that my anxiety doesn't surface again and that all goes well. Surgery starts at 7AM Friday morning...I go in at 5AM. It should last a couple hours and then I'll be in the hospital at least one more day...possibly two. Then chemo should start on Monday. I don't know what to expect with that yet, but I should find out when I visit another oncologist tomorrow. I also have a brain MRI tomorrow as well.

I'm sad that I won't get to take the kids Trick or Treating....or at least be at the door to hand out candy. But they'll still get to go. We have enough people around to get them out there to collect all their goodies. But I was thinking that it's also too bad I'm not going to be home halloween night for trick or treaters for another reason. With my scar in the back of my head, my new scar I'll have in the front, my bald head...man, I'd have a killer costume!

Psalm 69:32 The humble will seek their God at work and be glad. Let all who seek God's help be encouraged.

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Tuesday, October 28, 2008

A date

Surgery scheduled for Friday to put in the Ommya Resevoir to allow for chemo to drip directly onto my brain. More info when I'm more rested.

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A house for my doll


I just couldn't resist. I'm not one to spend a ton of money on things...and I do realize that's a very relative statement...but you can find my shoes at Target, my kids clothes can be found at Old Navy, Walmart is fine with me. As a matter of fact, I purchased Cameron some shoes at Walmart one time and one of my neighbors actually asked me what I was doing shopping there?


Anyhow, Max and Ella were invited to a Halloween party this weekend. And as soon as I walked into the little girl's room, I FELL IN LOVE with the bed. Usually I'm not like this. Usually I'd say that's way too ridiculously expensive, and just a regular matress and headboard would be just fine. But this time, I just couldn't stop thinking about how excited Ella would be to have this bed...actually, the boys would be just as excited. I was trying to come to my senses about it, but I guess I just feel that my little girl is going through so much...none of which she understands at all right now...that I just wanted to get her something that I knew she would love (or I would love). And by the time I started to come to my more frugal senses, my husband went out and purchased the bed.

We still have to get the mattress for the top and bottom. But overall, she loves it....and so do I!

(By the way, does anyone need a toddler bed or crib?)





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Sunday, October 26, 2008

A new week

It snowed this weekend. Nothing that stuck...but it snowed. Need I say more. I should probably write some post about how fortunate I am to see the snow...but I hate cold.

Last week I had an MRI of the upper part of my spine because of some pain that I was having. The early results showed no new or further tumor growth. So the tumor at the top of my spine is still there, but it has not grown at all. My husband was really happy to hear that, so it must be good news. Praise God. Also, there was no new cancer activity detected wtih the PET scan either. So that is another praise God!

Except I'm experiencing a lot of other concerning symptoms that seemed to have popped up over the weekend, including tingling in my tongue and down into my chin. I don't know what it means, but whenever I bring up tingling to my doctors, they become very concerned. I've also been having a lot of muscle pain in my neck and arms. Again, I don't know what any of this means right now. But I'll probably be having another MRI today. I wish they could just MRI my entire body and figure everything out at once.

I'm also pretty emotional...a lot. But I'm hoping that's because I haven't been getting much rest, despite my extra Ativan and other meds.

But I think today will be better. Today will be good. Because we serve a good God, and he's working through all of this.

Oh, and I owe people SO MANY e-mail messages and cards and thank yous. I'm getting there.


Lord, even when I have trouble all around me, you will keep me alive. Psalm 138:7

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Friday, October 24, 2008

Neighbors Helping Others

I've been very blessed. I have so many people helping me out all the time, and wanting to help me more and more. My husband has a job where I'm not required to work. My mom was able to quit her job to come out here to live until I kick her to the curb...or my dad demands he can't take it without her anymore...I will never send her away, so my dad might need to do some tugging. I have nanny help, and meal help and friends always dropping things by for me. I have neighbors entertaining my kids and carting them to their different sporting events. I am just surrounded by such caring and generous people.

But many, many, many people are not in my financial situation. When diagnosed with cancer, they have financial burdens, daily chore burdens, childcare issues, etc. It's so sad to me to think about how much harder cancer is when you are financially in a hole, or you don't have the friends and family around to help you.

I briefly mentioned to a wonderful neighbor of mine that if she knew of a charity that helps cancer victims with basic needs to let me know because I really wanted to support them in some way. I want others to know that the gifts you send are so cute and fun and appreciative, but I also encourage you to take the money you'd spend on a gift and donate it to a charity that helps cancer patients.

Well, while I was dragging my feet, my neighbor kicked into full gear. And now many neighbors are involved. And a great event, to raise money for the Angel Foundation is now in full swing! You are all invited. Details are below!


Save the Date
for
An Evening of CARIng


Join us for a memorable and exciting night of caring, comedy and community honoring Cari and cancer patients throughout the metro area.


Featuring nationally known comedian
C. Willi Myles


Saturday, November 15
5:00 – 9:00 p.m.
StoneRidge Golf Club
13600 N. Hudson Blvd., Stillwater


benefitting

THE ANGEL FOUNDATION


Learn more about this foundation at www.MnAngel.org


Watch for more details and ticket information
coming soon!

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Thursday, October 23, 2008

Another scan

Another very long day. It's almost 10:00 PM, and I am just getting home from a last minute MRI on another area of my spine.

I need to sleep now. ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ.

Wednesday, October 22, 2008

Choices

First the great news...I had my last brain radiation today. They asked me if I wanted to bring home the "mask." Heck no! That thing was way too creepy, and nothing I want in my house..although it would probably make or an interesting halloween costume. Hopefully this red forhead and eyelids and itchy head I developed due to the radiation clear up. I have about week left of my spine radiation. Then they'll do an MRI to see how effective it was. I also have a PET scan tomorrow, to see if there's any other cancerous activity in my body that we might not know about. So we're praying for a clear scan.

We also need prayer for guidance. Basically, I needed to make a decision...well...yesterday really.... about what chemo treatment I want to pursue. It's so hard to decide because apparently my condition is very rare and there is just very little data on it at all. For example, that Blood Brain Barrier Disruption I had written about before... "Of the four patients treated with leptomeningeal disease, two had a response to therapy that lasted 10 and 16 months. Two of the patients had progressive disease after the first month of treatment." Not much info to go on.

So my husband has been tirelessly researching option after option after option. E-mailing and calling every big name under the sun. He is just amazing like that.

We're going to see another oncologist at the Univ. of MN tomorrow morning, and I'm going to meet with the surgeon to discuss the intrathecal chemo using an Ommaya Resevoir in the brain. Then we'd also alternate that treatment with chemo directly into the spine. Here's a link to some very basic info about it.

Then I have another option of systemic chemo by pill. I personally don't have much info on that right now that I can remember enough to write about.

It's stressful trying to decide. But it's a decision that I must make with God's guidance. I pray that he makes it so clear to me I have no other option but His way.

I was also thinking that maybe I should just choose the therapy that will let me go on the most trips to really warm and really fun places. Not sure that's the best medical option, but it sounds good to me!

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Tuesday, October 21, 2008

Prayers for Others

Yes, my situation is bad, medically speaking. But I encourage you to pray for the following people who are also undergoing difficult cancer battles.

http://graceandrew.blogspot.com/2008/10/sooner-than-later-updated.html
I was just introduced to this blog a couple days ago and I still have a lot to read to learn Andrew's story. But basically, along with cancer elsewhere, he has lethal cancer in his spine. He also has a wife and 2 very young children. Now if you want to read about some amazing love for our Lord, then you need to read his entries. I also encourage you to watch the video at the bottom of this post.

http://www.fatcyclist.com/2008/10/20/jumbled-mess/ My brother sent me this blog when I was first diagnosed with breast cancer. It's actually a cycling blog...and I'm not much of a biker, except for around the block, but the writer Elden, is very funny. He also does a lot to encourage donations for cancer research. Elden's wife Susan was diagnosed with breast cancer a couple years ago and it progressed from there, into the bones, into the brain. They have four children. I believe two are tweens/teens and the twin girls are maybe around age 7. Susan had a really bad night last night.

http://cfhusband.blogspot.com/2008/10/latest.html I've been following this blog along with thousands and thousands of others for quite some time now. Tricia is a young woman living with Cystic Fibrosis who gave birth to preemie little Gwyneth last year. After a difficult delivery and later a double lung transplant, Tricia developed cancer often associated with transplant recipients. She just received news that the chemo she has been enduring has not worked.

I don't mean to make anyone sad or depressed with these posts. I've actually been following the blogs because they've been encouraging to me...reminding me to be a fighter. I hope if you take some time to pray for me and my family, that you can squeeze in some extra prayers for Tricia, Susan, Andrew and their families.

Lord, please cover these families with your love. Show them Your almighty healing power and let them know that it is through Your grace that they are saved and through You they will find peace. You are forever with them. May they call out to you for Your guidance with any decisions that they need to make with regard to their health and their families. Give them strength and hope and happiness. In Jesus name...Amen.

Matthew 17: 19-20
"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, `Move from here to there' and it will move. Nothing will be impossible for you."

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Monday, October 20, 2008

Feeling much better

Today was a complete turn around from the weekend. Lots of good today.

I drove by myself, went grocery shopping and bought a new pair of shoes. I have not been driving since my brain surgery two months ago. Mostly my mom drives me around, and although she never complains I feel bad asking her to take me everywhere. So it was nice just to jump in the car and go. (When at Mayo last week, my husband let me drive home to "test" my skills...obviously they were fine).

I woke up with energy today. Maybe it was because I slept all night without interruption, but whatever it was, I was well rested. I was not lethargic and didn't even need a nap today.

I had to go into my husband's hospital today to give him something when he was in surgery. While there, I met some of the nurses who work with him. They were so nice and spoke very highly of my husband, so that was nice to hear.

I talked on the phone to my sister. I actually hadn't done this in quite awhile. Just haven't been feeling well, and didn't want to be the messenger of my all my bad medical news. She lives in New Jersey, so I don't get to see her that often. However, she is coming out here in a couple weeks.

A neighbor dropped off the best chicken noodle soup I have ever had.

Last week Max was asking me his phone number. Then he was trying to memorize it. He finally asked me to just write it down for him on a piece of paper. He then told me that he needed it because he wanted Rosie, a girl in his class, to come to his house. Today, Rosie, actually called him, and now we have "playdate" set up for next week. Despite how much they look a like, my little Max kid is SO different from his brother, who has no interest in girls at all....and I'm perfectly fine with that!!!!!!!

I got an e-mail message from the author of Diary of a Wimpy Kid, and he's going to send Cameron a signed copy of the journal. Cameron's been writing in his copy constantly, so I know he is going to love a new signed copy as well.

God has been working in so many people's lives through my struggles. Our pastor talked about when you surrender to Christ, you surrender it ALL. You don't get to pick and choose what you want to surrender. You give your LIFE to God. And that's something that I'm trying to not understand, because it is all beyond my human understanding, but rather something I'm really trying to accept and live for. To please God, whatever that means.


Proverbs 3:5 Trust in the LORD with all thine heart; and lean not unto thine own understanding.

Luke 14:27-28 Whoever does not carry his own cross and come after Me cannot be My disciple. For which one of you, when he wants to build a tower, does not first sit down and calculate the cost to see if he has enough to complete it?"

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Sunday, October 19, 2008

Fatigued

Usually Sunday is one of my better days. Today it didn't seem to be. I did get to church, but that was about it. I'm just so weak and lethargic. The thought of even walking anywhere to try to get some energy up just seems like too much work. I was reading about the Blood Brain Barrier procedure today with the computer on my lap and fell right to sleep like that.

All this weekend I find myself just drifting off in a daze a bit. I think the radiation is starting to have a negative effect on my cognition a bit. I only have 3 more days of the brain zapping, then a few more of the spine, and then I should be done with radiation. Woo hoo!

Right now I'm just so frustrated that I can't do the things I want to do or that people want me to do. Cameron had a birthday party to go to. I wanted to bring him and take Max and Ella some place fun while the party was going on. At the last minute I backed out and let my mom take them. I was just too tired. Today my friend Libby took the boys after church, and then Melvin took all the kids to hangout at an arcade/bowling place downtown where they like to go. I wanted to be there with them. I should be trying to have fun with them. I don't want them to remember me as being too sick to do anything with them.

At the prompting of my husband, when he had the kids out, my mom and I went to a movie. As long as I'm not too tired, or in pain, or dealing with stomach issues...then I can watch a movie. I like losing myself in the storyline, momentarily allowing myself to forget about all that's medically happening right now.

But movies are only temporary, and I gotta get a grip on all that's happening. Here's to a more energizing and uplifting day tomorrow!

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Saturday, October 18, 2008

Blood Brain Barrier Disruption...doesn't that sound like fun.

For those of you who actually like science/medicine, here's a procedure I'm seriously considering.

Friday, October 17, 2008

Appointments

I had a radiation appointment at 7:10 AM.

Next, I had an appointment with a doctor at the University of Minnesota to discuss a particular chemo procedure.

Then we drove over an hour to the Mayo clinic to discuss other chemo options with an oncologist.

Finally, and most importantly of course, my husband and I went to a local restaurant/wine bar.

I'm just a little exhausted.

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Thursday, October 16, 2008

Fine, I'll just write it.

Let me preface this message by saying that everything I’m about to write is from the scientific, medical viewpoint. I personally am not banking on this. I know that the Lord can heal. I know that the Lord will heal. Now really, with 3 adorable kids like this, how could You not heal their mom? So as you read the factual stuff below, please don’t think I’ve given up. Please don’t think I’m doubting a positive outcome. Please don’t think I’ve lost hope. I haven’t. But we do need to pray for complete healing from our Lord. I so want to see His miracle. I just think that would be such an amazing story to tell!

Now with all that said, this is not an easy post to write. Not because it’s all news to me… but really because I feel bad for my friends and family who have to read this. However, I really am not going to put it off any longer.

When I first was diagnosed with a brain tumor, I had looked up a study at the Mayo Clinic that basically said when the breast cancer goes to the brain, there’s basically a few months to a little over a year life expectancy for the patient.

My husband did not like that I had found that article (that he had already read). He said that wasn’t my case. My tumor was confined and the tumors in the article may not have been and involved other issues as well. And so they took the tumor out…and we thought all would be well.

Then we found out it’s not all gone, and from the time of the surgery to the scan right after radiation started, the brain tumor had started to grow. Which is why you do brain radiation anyhow, to get all the “leftover” tumor. So we were hoping the brain radiation would stop/slow the growth of the tumor. As long as it wasn’t in the spine, we were fine. If it was in the spine, then that would be really bad. But mine wasn’t. So it was good.

But then it was in the spine. So that “rosier” picture of “at least it’s not…” has now disappeared. And the reality is that none of this is good…at all.

And considering how everything else is going, who knows if the cancer is now in my bone or what. Seems like every other week it’s something different. I can’t believe how crazy fast this cancer is spreading.

Asking the doctors recently if they knew anyone in my situation who had a favorable outcome, and they sadly, but honestly, tell me no. The treatments now are about buying time. If we do nothing, we’re talking weeks. If we do something, well, months. We’re looking at a few different chemotherapies. Some are oral, some drip directly onto the brain, some are injected into the spine. Some are a combination of all of them. My husband and I are going down to Mayo again tomorrow to discus options.

Again, I’m not expecting such a gloom and doom outcome. I’m expecting greatness! So please join me in doing so. And because so many people have asked...of course you may put me on your prayer lists...no permission needed there!


Ephesians 6: 10-18
In conclusion, be strong in the Lord; draw your strength from Him. Put on God’s whole armor, that you may be able successfully to stand up against the strategies and the deceits of the devil. For we are not wrestling with flesh and blood, but against despotisms, against the powers, against the world rulers of this present darkness, against the spirit forces of wickedness in the heavenly sphere. Therefore put on God’s complete armor, that you may be able to resist and stand your ground on the evil day, and, having done all, to stand. Stand therefore, having tightened the belt of truth around your loins and having put on the breastplate of integrity and of moral rectitude and right standing with God. And having shod your feet in preparation of the Gospel of peace. Lift up over all the shield of saving faith, upon which you can quench all the flaming missiles of the wicked. And take the helmet of salvation and the sword that the Spirit wields, which is the Word of God. Pray at all times in the Spirit, with prayers and entreaty. To that end keep alert and watch with strong purpose and perseverance, interceding in behalf off all the saints.

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Tuesday, October 14, 2008

No Wimpy Kid


I had Cameron's parent/teacher conference tonight. He's doing very well. No concerns from his teacher. And I heard the two "s" words I've heard the past 2 years. SMART and SPACEY. Does not surprise me at all. Except the "spacey" part is actually getting better I feel. He hasn't forgotten anything this year, yet. Not sure if that's Cameron maturing or the teacher being on top of him.

His school had the bookfair this week. Eventhough I already let him choose a few books, I allowed him to pick out a couple more today as a reward for such a great conference. He chose a diary/questionairre book in addition to a couple others. The book is a companion to 2 books he read last year in the Diary of a Wimpy Kid series. Tonight, in addition to several question pages that he completed, totally independently, he also wrote 7 1/2 pages in the "diary." I didn't even ask him to. He just did it.
(I'm so grateful for the awesome writing teacher he had last year).

I just thought I'd take a moment to brag on my kid. I think he deserves the praise.
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I meet with my regular oncologist tomorrow. We'll be discussing some serious stuff, and be making decisions on what, if any, treatment will best work for us at this point. If we do decide upon the chemo that drips directly into my head...well, that will be starting in less than two weeks. It's all very serious now.
14-16 "If you'll hold on to me for dear life," says God, "I'll get you out of any trouble. I'll give you the best of care if you'll only get to know and trust me. Call me and I'll answer, be at your side in bad times; I'll rescue you, then throw you a party. I'll give you a long life, give you a long drink of salvation!" Psalm 91

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Monday, October 13, 2008

Lots of walking

I haven't had much energy lately. Just walking up the stairs has been taking all my effort. Ridiculous really. And I have this fear, huge fear, that in a few weeks, unless the radiation starts doing something productive, I won't be able to walk at all. With this new tingling in my right foot, I'm very fearful. I'll be talking to the radiation oncologist about this tomorrow.

So today, after radiation, when I actually felt okay, loaded up with a Caribou Caramel Highrise, I actually went for a walk. Just around the large block in my neighborhood...maybe took 20 minutes. Not far...but the furthest I've walked in awhile, so I'm glad I did it. I'm a little unsteady on my feet, but I managed not to trip or anything.

But my walking was NOTHING compared to the serious walking, and money raising, some people I've been aquainted with have been doing to help fight breast cancer. Below are some pictures of these amazing women and men who really pushed themselves physically, emotionally and financially. I know each person had to raise over a couple thousand dollars just to participate. Many raised more than that.

Below, second to the left, is a lady named Dana. She found me through a blog. I do believe she lives in Toronto...where they have a 2 day walk to fight breast cancer. Her team was called Viva La Cure, and they raised LOTS of mula! When Dana was pregnant with her daughter Bella, she was diagnosed with breast cancer. Can you imagine that! Bella, Dana and her husband are doing well. Dana always makes me laugh in her messages to me. To help me get through my last MRI, she wrote out the lyrics to Run-DMC's "You Be Illin" Remember that from the 80s! I had to download it from iTunes. Very fun to dance around to! ----------------------------------------------------------------------------------------
Next is Shannon and Jeff. I haven't met either of them, but Shannon works at the same hospital as my husband. She's written me a few encouraging messages and told me that she was doing this walk for me...and others I'm sure! THANK YOU!!!!!!!!!!!!

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Below is a picture of someone else I've never met. To the left is Jodie Wilson. Last year she was diagnosed with Triple Negative Breast Cancer (same as mine) when she was in her young twenties. I found her blog via the Detroit News. I think I was about 2 weeks ahead of her in her treatment, so it was interesting and helpful to me to be going through the same experience.

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Lastly, on the left, is someone I met when I first was diagnosed with breast cancer. I was sitting in the plastic surgeon's office for my initial consultation. Beth started talking to me when she saw the breast cancer booklet I was reading and the look of complete fear and confusion on my face. Beth had just had her mastectomy and was starting reconstruction...which later got infected...but all is back together now. She has 3 young boys and actually lives in the neighborhood next to mine. She was very funny in her caringbridge site and also connected me to some other people going through breast cancer.


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Heidi Sue is another person I've never met, but she works with my husband. Her mother is a breast cancer survivor, diagnosed in 2006. Heidi did the walk with 9 other friends and family members this year. You can check out their amazing experience here.




I hope I didn't forget anyone who sent me pictures. If I did, please send them again so I can give you your props!



THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU

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Sunday, October 12, 2008

Sunday Sunday

As usual, Sunday turns out to be one of my better days. I think the break from radiation, being in church and a day of resting on Saturday all adds up for the good. Yesterday my lower spine was hurting so badly that I thought there was no way I'd be able to sit through the carride to church, let alone an entire service. But I was just fine.

I am very concerned about how quickly I feel like I'm physically deteriorating. Most of the pain and numbness in my leg/foot has been on my left side. Although I've been able to walk, it has been with caution and quite slowly. This just really happened within the last couple days. I was NOT like this last weekend. Today, I'm beginning to feel a little tingling in my right toes now. I hope they're not going numb now as well.

I've only had 2 days of spine radiation, so I'm eager to see what benefits this will have. I will meet with my radiation oncologist on Tuesday as usual to discuss progress.


No unbelief or distrust made him waver convering the promise of God, but he grew strong and was empowered by faith as he gave praise and glory to God, Fully satisfied and assured that God was able and mighty to keep His word and do what He had promised. Romans 20-21

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Friday, October 10, 2008

No more info really

Not really much to report here. I continue with the brain radiation, and yesterday I started the spine radiation. The treatment is all short and painless, but still an everyday (minus weekends) affair.

I guess the spine radiation can cause nausea and diahrea. But I have drugs for that if I need it. I am experiencing a lot of pain down my left leg, which is causing me to limp if not on pain meds. Motrin or something stronger usually helps.

My husband was out of town this week, but is coming back early tonight. So this weekend I'll learn more details about what has happened, and what is to come.

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Thursday, October 09, 2008

Not good

Another reason why I'm declaring a moratorium on all 3 hour MRI's......well, because every damn time I have an MRI they find something!

I don't really get how cancer works....at all. I don't know how you do everything the doctors tell you to do, you take all the precautions to prevent a recurrence, and yet it doesn't matter. I don't know how one day all is fine, tests are all fine, and a couple weeks later, the cancer has spread right where you don't want it to.

Obviously my MRI results were not good.

The cancer has spread to my spine. I'm not sure what the course of action is right now, but it's happening quickly. They'll continue to radiate my brain, and they will do a first radiation of my spine tonight and another dose tomorrow. I have no idea how this will affect me now.

I do know that there's a whole lot more to be done now. Something about opening up my head again, inserting some chemo drip thing or some other chemo option. I don't really know right now. I can't even think about it. I just found out a few hours ago, and am just trying to process it right now.

Please continue to pray. We need prayer.

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Wednesday, October 08, 2008

Not pleasant

I hereby call a moratorium on all 3-hour MRIs. If they want to do more than a couple tests, they're just going to have to spread them out over a couple days. The last hour was brutal.

Results tomorrow, I guess.

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Tuesday, October 07, 2008

A little puzzling

(Photo by Kathleen Smith)
My little Max has some obsessive compulsive tendencies. It started when he was quite young. Every night, he HAD to have his covers a certain way. When he was a bit older, he insisted on watching us turn on the air conditioner, even in below zero whether. And now when it comes to his "papers" and "pictures" that he makes, I can't throw any out, or he will look and look and look for the one picture he drew 2 weeks ago at a restaurant, or he'll go to bed screaming about it.
I'm hoping this OCD tendency will manifest itself into greatness....that his stubbornness and persistence will pay off some day, in whatever positive way that would be.

Today Max took out a puzzle. A 150 piece puzzle. A Shrek puzzle featuring Max's favorite character...Fiona. That little child worked on that puzzle for at least an hour this afternoon, and then continued with it later this evening. It's still not done, but he in no way plans on giving up. He was not happy when I made him go up to bed before finishing it, but I told him he can continue with it in the morning.

Not only is he determined, but obviously quite patient as well, if you consider the difficulty of the puzzle for his age.

I can only hope that tomorrow I have half his patience. I have yet another unexpected 3 hour MRI tomorrow on my entire spine again. Apparently a little weakness in your foot is not something to take lightly, as 3 different doctors ordered this long MRI because of their concern. I'll just show up and lie there...and maybe take some Vicodin to help get me through it.

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Monday, October 06, 2008

Healing

Although radiation really drains me, something things are better.....much better.

I don't have those horrible, unbearable headaches anymore. They seemed to go away when I started the steroids again, but the past couple nights I haven't taken my evening steroid, just to see what would happen. The headaches did not return. So I'm assuming that the growing tumor (that we thought was gone), is shrinking with the radiation. Of course I don't know this for sure, but it makes sense, and it makes me feel good.

I also was prayed over at church last Sunday by our pastor Greg Boyd and other members. I had a lot of anxiety over this concept of "healing" because you hear so many different stories....if you just believe you'll be healed, it will happen...if you believe it enough, it will happen...if you have any doubt, you will not be healed....If you pray the healing scriptures enough times, you will be healed, etc. etc. etc. Sounds simple....but how scary. I know people who have been filled with 100 times more faith than I am, and yet they were not healed. Does this mean they were doubtful? And then, what exactly is doubt? If you think about being sick, are you being doubtful? If you're preparing yourselves or others for the worst, does this mean you're doubting the Lord's ability to heal? If I'm absolultely positively without any kind of doubt sure that I will be healed, I would not have a worry or care in the world with regard to my health, right? Such a wonderous concept of healing should not bring such stress on a person.

My pastor prayed not only for healing, but for peace. Because he said that we need to have faith, and we need to believe in healing, but ultimately do any of us actually know if we'll be healed? No. That's up to God to decide. We need to believe that we can be healed. We need to push ourselves into putting everything into God's hands, and Him to come into us and heal us. But we have no control over that. And doing everything medically and leaning on each other emotionally and supporting each other spiritually are all things we need to do. None of those things doubt our Lord. And ultimately, let's face it, we will be healed, living a glorious life in heaven.

I think I'm rambling now...probably making no sense. But the good thing is, I felt good after being prayed over. Hearing someone rebuke my illness just felt so right. I might not have fallen down on the ground, spun on my head and danced for joy that I had felt the Holy Spirit and, I was healed. But I did feel His healing touch...and I feel at peace.

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James 14-15
Is anyone among you sick? He should call in the church elders. and they should pray over him, anointing him with oil in the Lord's name. And the prayer of faith will save him who is sick, and the Lord will restore him; and if he has committed sins, he will be forgiven.

More Appointments

Radiation everyday.

Neurosurgeon follow-up today.

Neurologist tomorrow.

Radiation Oncologist tomorrow.

Oncologist Thursday.

Isn't an apple a day supposed to keep the doctor away?

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Sunday, October 05, 2008

Them apples

This is the third time I'm writing this blog. I just don't want to be so negative. And everytime I wrote this weekend, I found myself being negative.

I think a lot of it has to actually to do with the radiation itself. I think all week it brings me down both physically, emotionally and mentally. It makes me foggy, makes me tired, makes me anxious.
So trying to do something simple like taking the kids to the Apple Orchard...with my mom, and husband doing everything while I just tagged along (even just sitting on a bench while the kids ran all around), can be very frustrating. Because I just don't think it should be so hard. Even last night, my husband and I finally got to go out together, to dinner and a concert. It really did take a lot of effort to stay up so "late" (past 9PM). This kind of stuff frustrates me. Because it's not my "normal" life. And I miss that. We all do.

However, by the time Sunday night came around this week, I finally felt normal. I cooked a real dinner, I gave my kids a bath, and I sat down to enjoy some Desperate Housewives...not fatigued at all.

Radiation starts all over tomorrow...so I'm just going to enjoy my Sunday night shows, while I still can.


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Ephes 1: 3-7
Blessed be the God and Father of our Lord Jesus Christ, who has blessed us in Christ with every spiritual blessing in the heavens, as he chose us in him, before the foundation of the world, to be holy and without blemish before him. In love he destined us for adoption to himself through Jesus Christ, in accord with the favor of his will, for the praise of the glory of his grace that he granted us in the beloved. In him we have redemption by his blood, the forgiveness of transgressions, in accord with the riches of his grace that he lavished upon us. In all wisdom and insight, he has made known to us the mystery of his will in accord with his favor that he set forth in him as a plan for the fullness of times, to sum up all things in Christ, in heaven and on earth. In him we were also chosen, destined in accord with the purpose of the one who accomplishes all things according to the intention of his will, so that we might exist for the praise of his glory, we who first hoped in Christ. In him you also, who have heard the word of truth, the gospel of your salvation, and have believed in him, were sealed with the promised holy Spirit, which is the first installment of our inheritance toward redemption as God's possession, to the praise of his glory.

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Thursday, October 02, 2008

The day

I am not amazing. I keep getting these really great messages from friends/family/strangers about how amazing I am. And I certainly do appreciate the encouragement. But let me tell you how amazing my day was today.

Cameron woke me up around 6:30. My husband sent me back to bed while he got him breakfast.


After resting for a little longer, I joined my mom and son downstairs. We discovered the coffee maker was broken....major catastrophe, so my mom went out and got coffee.


Ella and Max made their way downstairs, and eventually had their instant oatmeal breakfast (Ella prefers hers cold these days!).


The kids played nicely, mostly, until I put Cameron on the bus.


Max and Ella continued to play, while I sat on the couch and just vegged out and basically did nothing. I just couldn't seem to break out of this funk. Eventually, my husband told me to go upstairs to lie down, while the kids played in the basement.


Around lunchtime I finally dragged myself out of bed, got a shower, heated up some food for the kids, and then hitched a ride with my mom to 2 of my doctors' appointment.


Then I came back and rested...again.

See...nothing major. Nothing amazing that I'm doing. Now everyone else around me...they're amazing...especially my mom. But no great feats out of me. I'm not some..."screw cancer...I'm going to live life like a normal kind of girl. Cancer can't get me down." I'm not taking this time to raise money, raise awareness or raise my IQ. I wish I could be that way. But right now, I'm just too tired. I'm just getting through each day.


Radiation just seems to be sapping my energy big time right now....or else I need some major espresso shots added to my daily brew. I think I'll try that tomorrow!

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Cameron's school is part of some grant that sends math games home with the kids each week. It has been a lot of fun, especially when Max can start to do the games with him. It was nice watching the two boys work together to create 3-D sculptures before school this morning. Cameron is very encouraging to Max.

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Wednesday, October 01, 2008

Again.

The fallout has begun.....again.

Nothing dramatic yet. I can just yank on my hair and it comes out easily.

I'm not that emotional this time. Small price to pay for my life.

I am, however, on the lookout for some very adorable scarves...my headcovering of choice last year. Scarves actually seem to be showing in the stores this year, which makes it nicer.

Maybe, just maybe, I might try to find a wig I actually like this year.

2cute4cancer.

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Psalm 139:14
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.

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