chemo chemo chemo

So much has been going on here.

My mother in law is here, so that has been nice.

I started a new chemo today. And will have another kind each day next week.

I was able to see Harry Potter with my husband yesterday. Cameron was mad that we wouldn't let him see it. But it's really not for his age...at least I don't think so.

My mom will be leaving for a couple weeks. She needs the break but we will miss her.

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1 Peter 4-11

Farher, I pray that their family members love one another

That they are hospitable to one another without complaint

Serving by the strength that You supply.

So that in all things You may be glorified

Running East

I've received a lot of gifts from people encouraging and praying for me. My Aunt Marianna and Uncle Keith sent me a framed copy of the poem below. I love it!

Today I Run East!
(A promise of HOPE)
By Barbara D. MacAdam

When I got the news, my world stood still. Like a breath in the twilight, tightly held through sheer will. So I’ve stayed in this dream state, suspended in time, where the past has not left and the future’s not mine.

Fear swells within me, and try as I might, I can’t stay where I am. I know I must fight. With a gasp my lungs burn, as I climb to my feet, but which way should I run—toward the West or toward the East?

The West holds my dreams & joys of my past. They are trapped in the sunset—how long would I last? I’d have to keep running just to stay in the light, but I’m growing so weary. I need help with this fight!

I rest my eyes briefly, lying prostrate due west, mourning precious time spent on this futile quest. The dark at my back, creeping forth from the East, holds the fear of the future like a stalking beast.

My heart has grown weary. My mind cannot cope. Shattered dreams slip through fingers—I’m losing all hope. Then a small voice recanted a promise I’d heard. “Come to Me all ye weary,” you can trust in My word.

It brought back a stirring of rekindled faith. I was flooded with HOPE and began to shake. What if I stood and faced down this beast—my fear of the unknown, that loomed in the East?

It then wouldn’t matter if I froze or I ran, for God’s earth has kept spinning since all time began. So I turned toward the darkness, no longer alone, and stepped in with arms reaching, as my soul searched for home.

And though the sun set behind me. I felt inner peace, for SUNRISE will soon meet me if,,,today I run East!
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Tomorrow I get an MRI, Chemo, and meet with an oncologist.

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Hebrews 12:1 Wherefore seeing we also are compassed about with so great a cloud of witnesses, let us lay aside every weight, and the sin which doth so easily beset us, and let us run with patience the race that is set before us,

chemo

I'm sitting here getting chemo right now. This is now a weekly event. They give you all sorts of premeds so you're not nauseous or anything. This does involve involve Benydryl, so I do get very sleepy.

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I'm in really nice room with a private TV. The Food Network, HGTV, Bravo, and ABC usually are my channels of choice,

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When you walk into a doctor's office, and everyone who works there knows your name....I'm not sure if that's good customer service, or if I'm just at the doctor's way too much. Both I'm sure!

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FYI If you're commenting on my blog, and you're not a regisatered user, I cannot respond to your comment. Blogger will not let me. So please don't think I'm ignoring your message.

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Deuteronomy 31:8, "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." (NIV)

All around

I have another lumbar puncture tomorrow to inject more chemo into the spine. I feel like I just had this done. But I guess it was 2 weeks ago. I'll have to lie flat for most of the morning. Wish I could put a TV on my ceiling.

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Watching Top Chef has me thinking I should try to be a chef. My previous way of making meatloaf involved an egg, some packet of seasoning, and ground meat. My recipe today was a Martha Stewart one that one of my neighbors made for me last year. As I was making it today, all I could say to myself was, "What was I thinking?" Here's the recipe. It is quite good, but very time consuming....at least by my standards. On tomorrow's menu....scallops. Never made them before, but they're sitting in my freezer. Might as well figure out how to use them.

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I am very annoyed about this peanut butter scare. My son eats PB & J for lunch almost every single day.

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I'm excited for a new President...finally.

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"Then God said, "I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food." - Genesis 1:29

Our daily grind

It was negative one this morning...with a windchill below negative 20. And it snowed last night. I am so grateful for our snowplow service!

Started my new chemo pill Xeloda today. So far, I'm fine. Here's some info about it. Apparently most people don't lose their hair. Now, my hair is already gone from the head radiation...so I'm not sure if this means it will still grow back. If not, the very sweet au pair (nanny) across the street who is a hairstylist and cuts hair and wigs for runway models and such gave my wig a new style. I like it much better, and even wore it to the movies last week. When I find the picture I took, I'll post it here.

Doing physical and occupational therapy twice a week. I have math homework! Cameron looked at it and asked me if I wanted him to do it for me....that little munchkin!

This was my first "school day" without my mom here. With the help of some friends, I had some drivers for my appointments and getting Max to and from school. Except for the physical stuff that I just can't do right now because of my arm...well shoulder actually...like lifting up Ella...I was able to do mostly everything. The kids were actually really good this morning....instead of the usual whining, screaming and begging. Today Cameron was teaching Max and Ella how to read. He was doing a really good job, and Max and Ella were actually learning from him!Next I'm going to try driving....after the roads are all completely plowed and free of ice. If I am able to drive again, then my mom can finally go back home to my dad (not that I want her to leave at all...but she does have a home and another "life" besides taking care of me and my kids). Please pray that things continue to go in a positive direction.

Matthew 15:30-31

And great multitudes came unto him, having with them those that were lame, blind, dumb, maimed, and many others, and cast them down at Jesus' feet; and he healed them; insomuch that the multitude wondered, when they saw the dumb to speak, the maimed to be whole, the lame to walk, and the blind to see; and they glorified the God of Israel.

One therapy over, another starts

I finished my upper spine radiation yesterday. It's always bittersweet when I finish my radiation because oh I am so thrilled that I don't have that daily often unpredictable (timewise) appointment. But the radiation therapists and other radiation nurses and support staff I see on a daily and/or weekly basis are so incredibly nice, I'll miss seeing them.

Great news about my brain scan. According to the report, there is no cancer in the brain. The surgery, or chemo, or radiation worked. I say this cautiously because my husband said there can be cells that are too small to be seen. But for now, we are very happy. And praise God for his healing and the talent and knowledge and guidance that He gave the doctors.

The next step is do get an MRI of my spine where they radiated several weeks ago. That will be happening tomorrow. And I'll probably be starting a pill form of a chemotherapy soon called Xeloda. It's not supposed to have a negative effect on my mental function, so that's really important to me...especially right now.



(Psalms 30:12 KJV) To the end that my glory may sing praise to thee, and not be silent. O LORD my God, I will give thanks unto thee for ever.

Bits and pieces of info

I am feeling MUCH better today. I just decided that I'm going to have to stay on top of my pain medication. That every 4 to 5 hours I'm going to have to take a high dose of Vicodin. I don't want to do this, but even when I drop it a little, I start to have a lot of pain. So until my guests go away, I'm going to keep to this pain medication regiment. Or else I'll just be lying in tears all day, worthless.

Tomorrow, I start a 2nd chemo, called Xeloda. This is a pill I take by mouth. I have to read up on all the side effects and how often I take it, but I THINK it's a daily pill. Obviously I'll make sure I know tomorrow when it's delivered. Here's what's most ironic about this kind of chemo....I won't lose my hair! Except I've already lost my hair from radiation, AND I'll lose my hair from the other chemo...so it doesn't matter!

My Canadian friend Dana set me up with a link to http://www.4women.com/, which has some pricey...but worth it....scarves. They just plop so nicely on your head, are comfortable, and very cute. She used them when she was going through chemo, and I'm definitely going to get at least one more. I do believe that this was the kind Lynette used for her character in Desperate Housewives last year. If you know of someone else losing her hair, this would be a good gift for her.

My sister and 17 year old niece arrived today from New Jersey. It's so nice to be with them, but I hope my kids don't drive them bonkers! They're hoping to go see Madagascar 2 this weekend. Goodness, my kids are having so much fun, they're going to be quite mad when I get healed!

I also have some friends visiting from Utah. I was supposed to be out there visiting THEM much sooner than now, so I feel bad that they're making the trip out here. But it will be great seeing our kids playing together. My friends are so smart, I hope my newfound chemo/brain/radiation fogginess doesn't throw them off too much. A very small price to pay for my healing, but one that I do think about.

Next week I'll have more friends and family to see with the Benefit for the Angel Network.

And on a final note, I have to type that Cameron finished his first Harry Potter book. Now I have a lot of hesitation in writing this. Because I can tell you that he read the words on the page. Did he comprehend it....very little. But that's okay right now. He was SO EXCITED to read it, he was up late trying to sneak in reading by the aquarium light, and he read at every spare moment on the bus, in school, etc, that at this point I don't really care much that he didn't get most of it. He did understand some of it, and after tried to talk with him about it yesterday, (while I was lying flat in bed) he picked up more information to help him comprehend. He's now excited that he finished because I told him last year he had to read each book before I'd let him watch each movie. But I do think that he's extra excited because he finished the book, and he knew that's important to me! I am proud of him.

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Isaiah 41: 8-10, 14-16
But you, O Israel, my servant,
Jacob, whom I have chosen,
you descendents of Abraham my friend,
I took you from the ends of the earth,
From its farthest corners I called you.
I said, "You are my servant:"
I have chosen you and I have not rejected you.
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand...

...Do not be afraid, O worm Jacob,
O little Israel,
for I myself will help you," declares the Lord
your Redeemer, the Holy One of Israel.
"See I will make you into a threshing sledge,
new and sharp, with many teeth.
You will thresh the mountains and crush them
and reduce the hills to chaff.
You will winnow them, the wind will pick them up,
and a gale will blow them away.
But you will rejoice in the Lord
and glory in the Holy One of Israel.

Mommy's halloween costume

WARNING: Picture with staples in my head at the bottom of this message. May not be for those with a queasy stomach.


I had my first chemo treatment into my head today. A little needle prick, but that was it for pain. Injecting the chemo took about 5 to 10 minutes to administer. I then had to go home and lie flat for a couple hours. There was concern about headaches, like one would get with a lumbar puncture. However, so far, no side effects. Praise God!


I still have all my other aches and pains, plus a few more that have developed recently. But we're praying that the chemo will help take those symptoms away...without taking away anymore of my brain function.

And as I look at this picture, I was thinking, hey, I'm going to have a scar of my initial "C" on my head. There are people who pay big money to have such scars made...oh, it's not like my surgery was cheap. I guess I'm more shocked that people CHOOSE to do crazy stuff like that....having letters carved into their body!
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He who dwells in the shelter of the Most High, who abides in the shadow of the Almighty, will say to the Lord, My refuge and my fortress; my God, in whom I trust.” Psalm 91:1-2

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.

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.

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!

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.

Maybe you can understand this better than I can

So here's the latest. I'm not having any more tests. The more tests I get, the more messed up results I get. Okay, I'm not that stupid, but the thought crosses my mind.

First here's the good news. There is no cancer in my hip. There was never any reason to think this, except that this is a common place for some cancers like mine to spread, so doing the MRI on my hip was really a precautionary measure. Also there is nothing cancerous in the bone in my leg. Since I have some numbness in my knee and still pain from my groin down my leg, this was a concern, but the MRI showed nothing, and it's probably just a side effect of the lumbar puncture done last week.

Also, I found out after further explanation from my husband, that cancer that I thought was shown in my spine, was actually in my spinal fluid. This makes a difference. The spinal fluid is around my brain, or in my brain, or at the bottom of my brain...or something like that. That which they found on the MRI, was not necessarily IN the spine. Of course, as usual, I often get medical details wrong...so I could continue to be wrong. Anyhow, the spinal fluid would eventually go into the spine. We're hoping that this did not happen, but it is still very concerning. and is a possibility. At least we know that the spinal fluid with the cancer that was in the brain, is being killed by the radiation that I'm currently receiving.

The bad news is that they might not have actually gotten all the cancer out of my brain. This was always a possibility. The doctors have described it like peeling an orange, or an apple or something like that. Although you might cut away all the cancer, there might be a thin layer left over, which is why you do chemo and/or radiation, to kill anything that may be lingering. When I had an MRI after my surgery, there was a thin layer that "lit" up, which could have been cancer left over, or it could have been "surgical change," which I don't get what that is, but it's supposed to be nothing to worry about. Seems like mine is probably actually something to worry about. Although, it's good to know that they've been doing radiation, therefore treating what might still be lingering cancer the way they would anyhow. Now there is also some discussion around whether it's possible/necessary /safe to do chemo now, or when I'm all done with radiation. And then there are some different options for the type of chemo, one that my doctor today said is "nothing to write home about."

Fortunately, I have this awesome husband who continues to be my amazing, medical, super-smart advocate. He's been contacting all sorts of medical personnel around the nation. Many of you don't know my husband and what he's battled to be where he is as a physician today, but just know that he is one determined man. Today, to get information about a particular chemo, he not only read the studies on the chemo, he contacted the doctor who actually did the studies. I am one blessed woman to have him as my husband.

Now my head is spinning just rereading all this very dumbed down medical jargon of mine. Just keep up the praying, and keep the faith with me.


Psalm 30:2 O LORD my God, I cried unto thee, and thou hast healed me.
Jeremiah 17:14 Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for thou art my praise.
Jeremiah 30:17(a) For I will restore health unto thee, and I will heal thee of thy wounds, saith the LORD;

Coming up

I get to go home today. Which is good, because there's nothing for me to do here in bed at the hospital anymore. But I'm also nervous. I feel kind of in a daze. But then an hour from now, I'll be feeling quite normal ready to take on the world. Not sure what that's all about. Probably just something that needs to work itself out.

My dad returns back to New Jersey today, so I pray for safe travels for him. I'm so grateful that he was here for all this and that he has a good job to go back home to. I really do have these amazing parents who will just do anything for me and I am so blessed by them. My mom is staying on as my caregiver until I kick her to the curb...but she doesn't realize that will be NEVER! I pray my kids won't drive her insane!

Other things on the horizon right now:

I'll have these staples taken out on Friday. I am REALLY panicing about this. The nurse said that each staple will feel like a pinch. Um...yeah....that's what they tell you when you get a shot...it will just hurt for a second. I think I'll just not think about what's to come until Friday.

Next week I'll have to start looking into radiation of my head. They need to make sure all the brain tumor is out of there. I don't know what all this means yet, but it will be happenening.

And then we may be looking at more chemo.

Whatever we gotta do right now....that's just the simple plan at the moment. Of course there's so much more entailed. But that's the basic plan.

Deport me!

Now that all my tests were clear, I can pretty much be assured that I won't be needing any chemo in the near future. So tomorrow (Wednesday) I get this ugly portacath removed.

It was great when I had it because my veins weren't ruined with all the needle pricks, and I could use numbing cream on it so that I never felt any pain. But it sure was ugly, looking like some deformed bone protruding from my body. Plus, when I would carry Ella when she was throwing a fit, she'd often push on the area of my port, causing discomfort and sometimes extreme pain.

To "deport" me, I have to undergo anesthesia, for a short 15 minute operation. Because they're knocking me out, I had to have a pre-op appointment today to make sure I'm healthy enough for the surgery. All was fine, except my blood pressure was a little low, and my white blood cell count was low as well. This is concerning, and something I need to check on with my oncologist, but not something that will prevent me from having the surgery.

I "go under" very early in the morning, so I'm hoping that by the afternoon, I'll be back to my normal self, and able to check off another task on my Kill Cancer To Do List.

Better breathing...but more tests.

It seems that my shortness of breath is getting better. Guess the antibiotic my husband prescribed and the steroids my radiation oncologist prescribed actually did something. I'm not having trouble climbing stairs anymore. However, my running is still less than desirable, as I tried to go for a little jog last weekend. I say try, because I found myself stopping every 5 minutes to catch my breath, running only for a total of 20 minutes, and only downhill or on flat land. I'm going to try again to get out there tomorrow. Hopefully I can do better.



My husband ran into my oncologist at the hospital on Monday. He told her about my recent breathing issues, so she immediately ordered a heart scan...called a MUGA. It's what they did before chemo to make sure my heart could handle it. With radiation and chemo, there's always concern about heart damage. I had the scan yesterday, and today my oncologist called. All is good! No broken heart!



She now wants me to have a PET scan. My whole body will be scanned for cancer (I think). I had it done when I was first diagnosed. I wasn't supposed to have another scan until August, but for some reason my onocologist wants to go ahead and do it now.



If all is clear on my PET Scan (let's pray!), I'll have a very minor surgery to have this Port removed. I wasn't going to have it removed until I was put under for my reconstruction, but since that won't occur for quite some time, it's best to have this foreign object removed sooner. I'll be so happy to have this ugly thing protruding from below my neck like an odd bone gone for good. It was great to have for chemo...but now I have no need for it!



With all that said, I humbly as for prayers for a cancer free scan!

Healthcare costs....a lot!

Up until this past year, my family has been pretty healthy. Except for some ear tubes, we've had no major medical issues. My husband also had really good medical insurance, so the actual cost of anything medical out of pocket seemed rather minimal. I never actually saw a bill for anything.

This past year due to some changes at my husband's job, we were forced to switch insurances. It's not as good. Now when I go to the doctor, I pay a $30 co-pay, in contrast to the $0 co-pay from before. I think we pay more for our prescriptions and a bigger percentage of any medical treatment as well.

However, what we have is better than nothing. Because when we switched insurances, there was a mix-up, and a bill came to our house. For ONE chemo visit..which included labs, seeing the oncologist, and the chemo itelf, we were charged:

Now multiply that by EIGHT, for all of my chemo treatments.

I thank the Lord that he provided a job for my family with any kind of insurance, and that my husband works so hard to provide for us.

Mile 26 has not been easy.

I don’t know what was going on with me physically today. I guess it’s like what my doctor said…my body is just really done with the chemo.

I woke up and made a list of errands that I needed to do when Sara got here. But I just ached all over. It was as if my normal routine of chasing my kids, holding Ella, going up and down the stairs, etc. was just too much for me this weekend. Today my body just shut down and didn’t want to move. By 10:00, I was more than ready to go back to bed. I honestly felt like I had actually run a real marathon.

Not even 3 cups of coffee this morning, or a Starbucks latte this afternoon, did anything to fight off the fatigue.

Must just be a lingering chemo side effect…that I’m sure will go away in a day or two…I’m sure of it.

In agreement

When I went for my final chemo treatment, I was really counting on not having to have the Neulasta shot the next day. This is the shot that helps your white blood cell counts stay up so that you don't get an infection (or something like that).

But it's also the shot that hurts when they administer it, and makes me feel all achy in the neck and jaw, and basically I feel like total crap for a couple days.

During my previous appointments, my white counts were up, so my oncologist said that I might be able to forgo the shot this last time. Unfortunately, my counts weren't so high this time, not abnormally low, but, not high enough to avoid the shot without risks.

When expressing my surprise at my lowered counts, the doctor replied with, "It's really just your body's way of telling you that it's just done with all this chemo."

Finally! My body has finally caught up with my mind. It's about time.

Chemo Observation Poem

She lies there hooked up to an IV bag.

He sits next to her.

Not a word spoken between them

And yet, when her eyes are closed,

I catch him just gazing at her,

With nothing but love in his eyes.

Thinking about the decades they’ve been together.

Wishing that he was in her place

Wanting to take her pain away

Wondering how she’s going to make it this time.

And what to do

If she doesn’t.