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.

Getting Scanned

The breast cancer I was diagnosed with is called Triple Negative. It basically means that my cancer will not respond to the usual hormones or medications that prevent it from returning. It affects a lot of younger people, and I read not too long ago that it often metastasizes to the brain. It's a new kind of cancer, so not much is known about it...which is why, last year when I was given the "all clear" for cancer, my brain was never scanned. I don't know if it would have made a difference. Who knew how long the cancer has been forming in my brain...or how fast...but my point is, if you've been diagnosed with Triple Negative, insist on getting a scan of your brain.

I think I'll be getting another scan this week. Although I finish my spine radiation on Wednesday...one less daily appointment...I have just started to exhibit some concerning symptoms apparently. My tongue is starting to get numb and tingly again on my right side (yes, I did just write a few days ago how it was better....but that's how crazy and confusing this cancer is). When asked if we should radiate more, my doctor said that we can't keep radiating the same spot now because it could paralyze me. It's all so confusing to me. And on Thursday we go to see my oncologist, where we'll have to make major decisions on chemo and the best options right now.

Baby steps....sorta

When you're used to being "very" right-handed, and you lose your ability to use your right arm, it's hard. My husband kept telling me to try to use it so that I wouldn't lose anymore function. I was to lift my right arm with my left to do things. Or struggle really hard to do something like wipe the counter with my right hand. This involved all sorts of awkward, uncomfortable movements. Eventually, I naturally just started using my left arm to do things..I couldn't help it.

But praise God, now I'm starting to gain some of my right arm function. It's VERY slight, but it's an improvement. I didn't notice it at first, because of memory issues and because I'm not even close to being back to my normal function with movement, but I can now start to lift my arm with extreme effort. I can tie my kids' shoes, and put on my own jacket. I don't know if it's radiation shrinking the tumor that's causing the nerve problems or what, but I'm grateful for any improvement right now. I go to a new physical therapy place tomorrow. We'll see what they recommend.

I also have a cookie decorating party with Max and Ella in the morning, then my physical therapy appointment downtown, then a radiation appointment, and lastly an appointment with a counselor. Rather busy I'll be. I get very anxious still when it comes to times and schedules, so I pray I don't get overwhelmed by it all. I've been trying to write out schedules with exact times for everything....as specific as the exact time I need to get in the car to be someplace. And I'll have to ask my mom about 5 times for each place/trip about where and when I'm supposed to be....and that memory thing keeps messing me up. But in the end, we (my mom) manages it all and we get to where we need to be and do what we need to do.

Two terms I find humorous about my day tomorrow. One is that at physical therapy, my husband wants to see if they'll do electrical stimulation to the nerves. And secondly, the counselor I'm to see tomorrow has the title of a Psychotherapist. I'm having flashbacks of the book/movie I read in high school One Flew Over the Cuckoo's Nest. Scary!!!!


"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus" (Philippians 4:6-7).

Treatment change and continue

It has been a series of highs and lows around here, that's just the honest truth. Sometimes I'm fine just hanging out with my kids, but other times I'm sad. Actually lately, things have felt worst than better. The weakness/paralysis is really bringing me down emotionally. There's a lot I can't do now, or that is very difficult..like even putting on a shirt. Having to rely on anyone for such a basic need makes me cry. And I know that my flip/flop attitude is driving my family crazy.

Like now. I was a blubbering mess earlier. Then a neighbor came over to tell me about all these people involved with the benefit and all the donations being made and interest being generated for the Angel Foundation.....and I feel good and happy again. Still loopy and confused about a lot, but not depressed.

Anyhow, back to the medical plan.

After the results of the latest MRI, it was decided that I would have radiation down my spine again where I didn't have it before. This at first was to be in addition to the pill chemotherapy, But this morning that game plan even changed. Basically, due to the toxicity of the situation, I'm only having radiation now.

So let me recap for myself. I had surgry to have the Omyya resevoir put in, which would drip chemo directly onto my brain. Although the surgery was done, and I've had one injection, we're not going to continue with it until we have to. That includes the lumbar puncture that I was going to have to endure once a month as well. Don't ask me to explain....I have no idea. And now the regular oncologist is taking the advice of my radiation oncologist of stopping all chemo until radiation is done...which is daily for about 3 weeks...minus weekends. Is your head spinning yet?

Again, I'm just so thankful I have so many people around helping me figure it all out.

More family, friends and other visitors coming in tonight through this weekend. Looking forward to seeing everyone....hopefully with a clear mind and all my necessary physical plumbing in working order!!!!!...believe it or not, I'm not joking.

(I'm "stealing" my bible verse from my cousin Dayna today because I really like it, and I'm excited about her new job offer. She really stepped out in faith and is an inspiration to me.)

"God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us." Ephesians 3:20 The Message

Warmth

Good news. As far as the MRI's have been read, the radiation has worked on my brain. That means that there should not be cancer in my head right now! Hallelujah! Again, who knows if I'm remembering/reading things right....but overall it's good news. YEAH!

Now the cancer is still in my spine. The new plan is to stop the "direct chemo injection into my brain chemo" right now until we need to start it up again (which should be no big deal with the Ommaya drip already in place from last surgery). We'll continue with the pill form of the Xeloda, which is the "everyday twice a day chemo" and we'll start the spine radiation next Monday. I visit with good Dr Vic on Thursday to discuss the daily radiation plan. Good thing I really like my radiation therapsts. Except it is kind of embarassing seeing all of them when I'm not so lucid and appear quite confused half the time. That's not the way I used to be. I'm hoping that the change of treatment will ease up on my stupidity!

Painwise was better today as well. The night was bad, but with a few adjustments throughout the day, I think we finally might have it under control. I've had a lot of people/friends/strangers suggest different options for pain, but it's really something I have to work on directly with my doctors. Believe it or not, it's the pain that is helping tell whether the different chemos are working or not. It might not make sense, but if we start throwing something else into the mix now, we have too much more to sift through...which could be better, or it could be worse. So I think we're just going to work with the plan that we have right now, and pray on it until we hear/feel otherwise. I thank you everyone dearly for your concern and suggestions.

Just wanted to let you know that depending on my arm/shoulder pain / numbness, my posts mights be shorter....as true also with my individual messages. I can wiggle my fingers in my right hand, but I can't independently lift up my right arm. I'm right handed....so this really is humbling . We're hoping the new radiation will help with this. But if not.....and I'll get through it.

Thank you everyone for increased understanding and patience. I'm going to end here while all still feels good....and with a couple pics.

The first pic is from my "Finally Fiesta" a couple years ago. When I had finally earned my Masters Degree in English Curriculum and Instruction at the University of Minnesota. The next pic is just a reminder of WARMER DAYS as we begin to tackle this frozen weather. Okay, this was in the Bahamas...so maybe that's cheating....but I could use a little warm pick-me-up. Psalm 150
1 Praise the LORD.

Praise God in his sanctuary;

praise him in his mighty heavens.
2 Praise him for his acts of power;

praise him for his surpassing greatness.
3 Praise him with the sounding of the trumpet,

praise him with the harp and lyre,
4 praise him with tambourine and dancing,

praise him with the strings and flute,
5 praise him with the clash of cymbals,

praise him with resounding cymbals.
6 Let everything that has breath praise the LORD.

Praise the LORD.

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.

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!

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!

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

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

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

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.

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.

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.

At least I still have my hair...for the moment.

Radiation continues. I think I've completed 8 treatments. But the thing is, it's weird going through it, but not knowing if it's doing a darn thing, because nothing really feels different. Um, let me rephrase that. Things feel different, but they don't feel better. If the purpose of the radiation is to eradicate all cancer/left-over tumors, than it seems that the trouble that tumors may be causing would be easing up. But it doesn't feel that way at all.

The numbness and odd sensations along my tongue and now into my lower teeth continue to spread. I'm pretty good about not biting my tongue now, but it is always a concern. However, I'm not able to taste things very well, which isn't beneficial when trying to keep an appetite up. The other head/neck/back/ear etc. usual pain still continues. But the head pain is not so intense. BUT, is that because the cancer is going away, or because I'm still on the steroids that relieves the pressure. which is what finally relieved some pain last week.

I also have continued numbness and swelling in my right knee, feeling like there's water in there. It's actually causing me to limp a little. When I had my spinal tap, we thought this was a side effect of it. Not sure if this continued numbness and swelling is supposed to happen.

Mentally, it's been a bit strange. I feel a little foggy at times. Like I'll wander around and just not be able to get anything accomplished. I can't figure out what to do first. And I often go back and look at what I've typed in e-mails and it's not so comprehensible with word choice or spelling. I'm still not really good with times and schedules, and some of that is getting better, and in other ways is getting worse. Again, don't know if it's radiation/tumor/brain damage related.

Can you tell that I'm a bit unsettled.

I'm not meaning to be such a downer here. I'm really just writing out my symptoms and issues to go over with my radiation oncologist tomorrow.

But on a good note, when I'm distracted by the fun of my kids, I feel better. Tonight, except for a few usual Max and Ella fits, things went very well. When I made Cameron do extra reading for homework, he didn't even complain, and instead, read outloud his Pokemon chapter book to Ella. When she got tired of listening to him, she found her own books to look though, while Max and I worked on a couple reading lessons. Cameron also helped Max go outside and look for items that began with the letter A for an assignment Max has this week. All the kids joined me in making some muffins from scratch (yes, I said from scratch...that's what happens when I get around my baking friends for a weekend), and they actually did pretty well with taking turns. I was able to overlook any pain and just have fun with them.

Although, it was kinda hard not to get mad when I finally put them to bed and found 18 pee-filled pullups stacked up behind Max and Cameron's computer tower in their room. After lying about it first, Max finally admited to doing it...of course with a smile on his face! Their room has been smelling like pee for the past couple weeks, and I couldn't figure out why. Well, now I know!-------------------------------------

Matthew 8:23-26

And after He got into the boat, His disciples followed Him. And suddenly, behold, there arose a violent storm on the sea, so that the boat was being covered up by the waves; but He was sleeping. And they sent and awakened Him, saying, Lord, rescue and preserve us! We are perishing! And He said to them, Why are you timed and afraid, O you of little faith? Then He got up and rebuked the winds and the sea, and there was a great and wonderful calm.

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;

A little creepy looking

I started brain radiation last week. Despite the new findings of cancer in the spine, our original plan of action won't change. I will first have whole brain radiation for about 24 days. The new course of action involves some sort of chemotherapy to treat the spine. My oncologist is still deciding what kind of chemo. And discussion has taken place on whether I start chemo at the same time I am doing radiation. Currently the answer is no. If I did start chemo now, the dose would be lower to keep it safe in conjunction with the radiation. This may not be as effective. But if I don't start the chemo now, will the cancer spread? We haven't decided exactly what to do about this.

Above is a picture of some guy (not me) set up for radiation. Yes, I have to wear that weird plastic mesh face mask which is used to bolt me to the table. It reminds me of spiderman, and isn't the most comfortable thing, but radiation only lasts a few minutes, so it's no big deal.

The headaches and other pain still continue, which makes it hard to plan anything, because I'm not sure how I'm going to be feeling. Last week I missed a few informal gatherings with friends because of pain or sleeping. On Monday, I've had to cancel hanging out with one of my friends. And today I had to cancel an appointment. When I'm not at the doctor's, I'm doing a lot of sleeping. So when people ask to get together with me, I'm a little reluctant to do so. I'm supposed to go to Wisconsin Dells this weekend for a girls' weekend away...9 of us have been planning to hang out together in one large studio. I pray I get this pain under control because I REALLY want to go!

Tomorrow I have an MRI in the morning. It will last a couple hours. NOT looking forward to that. I think they're scanning my brain and some of my spine again. My doctor said that he doesn't expect to find anything. I told him NOT to say that, because every time a doctor has said that, they've found something. I hope to be able to squeeze a nap in before heading to my radiation appointment....ha ha...get it..."heading" to my head radiation. . And most importantly, I'd like to get to the salon or some place where they do waxing. All these steroids I've had to take are causing me to grow a beard. I feel like I'm seeing a Billygoat every time I look in the mirror!

Finally, a continued THANK YOU to everyone for your kind words. I've had so many e-mails, I'm having a hard time responding to them all. But please know that I'm so grateful for all the prayers, help and encouragement.

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.

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!

At least one of us can run.

Before I was diagnosed with breast cancer, I was training to run the Marine Corps Marathon with my friend Lanette and my sister. This was to be my 5th marathon. For obvious reasons...surgery, chemo...I couldn't run the race which was scheduled in the fall.

I've run on and off during my treatments. Nothing at all consistent. Nothing at all to brag about. Only here and there...everyone once in a long while.

I couldn't wait to be done with radiation so I could get back on the road. With this spring weather, there's nothing I'd rather do than get out there and hit the pavement. After radiation, when it was still too cold to run outside, I took to the treadmill a few times. I'd run a mile, walk a 1/4 mile, run a mile and a half, walk 1/4 mile, etc. I think I made it up to 4 miles, with a little walking in between.

But then this shortness of breath issue suddenly came on. Because even walking up the stairs had me practically gasping for oxygen, I was afraid to even attempt to run. My radiation oncologist's solution so far has been to pump me with more steroids, but it's not doing anything for my breathing.

I met a fellow cancer survivor today to walk around a local lake. During the walk, I felt completely fine. But this didn't surprise me, as to be honest, when you're used to running, walking is a "break." I walked the 2 mile loop, drank some water, and decided that I felt so good, I'd attempt a little running.

Bad idea.

I hadn't run for more than 20 meters when I found myself struggling to breathe. I hit a very short hill, and that was the end of me. I just couldn't run.

I don't want to call my doctor again, because I don't want to just be told to take more steroids. Something is not right. Me being able to run, then suddenly NOT be able to run, means something wrong is going on inside of me. And I'm really frustrated. Because I need to run.

On a different, and much more positive note, Cameron ran the mile in gym last week. Now I don't know how accurate the distance was, but he clocked a 7:59. He was first for the entire 1st grade, and even beat most of the 5th graders in the one class that ran with them.

I do hope we can go running together soon.