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.

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!

----------------------------------------------------------------------------
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.

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.

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.

Seeking the same

Probably the hardest part about all this cancer is watching my kids have to deal with it. I don't want their memories of their childhood to center around mommy being sick. Last year, when I was first diagnosed with breast cancer, I did everything to try to keep the kids' lives as "normal" as possible. I signed them up for the same activities. I continued to volunteer in Cameron and Max's classroom. And when a new video came out, we still had "movie night" at our house, inviting some of the neighborhood kids over. It wasn't always easy, but it was something I felt was important to me and my family.

Of course I'm trying to have the same attitude with this new cancer. And that's part of the reason why the pain I'm experiencing is so frustrating to me. Basically, it's preventing me from creating a "normal" life for my kids. The pain that I'm experiencing makes it hard for me to want to do anything. So to counteract that, I have to take a bunch of pain meds, all of which claim to cause drowsiness. So I am constantly fatigued.

Today Cameron had an early football game. There was no way I was going to have all the kids ready for an 8:30 AM game. Thankfully Melvin was able to take him, because Cameron gets really sad if one of us is not there. Afterwards, the kids had a birthday party for Max's best friend, but I was so nauseous from what I think were the pain meds, that I could do nothing but lie on the couch and wait for Melvin to come home from the football game. There was no way I was going to be able to hang out with all three kids at this party, which was the original plan. Thankfully, my husband told me to go back to bed, and he got all the kids to the party, and hung out with them there for a couple hours, while I slept. If you knew my husband, you'd know that hanging around a bunch of kids he doesn't really know, is not even close to his idea of fun. That's one of those understood things that I do as a mom, not him. So the fact that he stepped forward and did this for me and the kids meant so much to me.

I felt much better later in the day, and just hung around the house with Cameron and Max, while Ella was napping. Although it felt good just being with my kids while they played video games, I still felt bad that my illness was keeping us from having one of our normal family outings. It would have been the perfect day to take Ugly Betty out on the river, but I just did not feel well enough to do so. Part of me told myself to just suck it up and go out there so your husband and kids could have a good time. But the other part of me knew that I'd be feeling awful, and wouldn't be able to help out with anything. So instead of hanging out on the water, we ate out at Red Lobster, which usually turns into quite a disastrous affair, but actually turned out to be a nice family dinner this evening. Not as fun as a boat trip, but I still enjoyed having dinner with the kids, and my crab legs (the ones Ella didn't get her hands on) were delicious.

Tomorrow is church, which is something that's really important to me. I learn so much from each service, and I just feel right when I leave there. I know that people are praying for me, and it makes a difference. I also feel it is important that the kids have a place where they can go to learn about our Lord in a safe and exciting setting. I am very impressed by the kids' program and will do everything I can to keep this as a constant for my little blessings. We also have a favorite breakfast place where we do brunch after church. Eli, the chef and I think owner, of Khoury's in Inver Grove Heights, is a man of God who even prayed over me when he found out I was going in for more surgery. The kids, and my husband and I, look forward to dining at this restaurant, so it's another important part of our family time that I'd like to keep in place, despite the difficulties I might be facing.

I guess right now it's a bit of a balancing game. My husband says that I need to rest and relax and allow my body to heal and get better. And yet, I have these wonderful kids before me that I still need to be a mom to. You can't very well be a good mom lying in bed all day. I pray that this pain goes away. That it disappears as quickly as it came on, so that I can do my "job" as mom and wife. So that my family does not have to constantly be told that mommy can't do something because she's not feeling well. And we can continue to live the life that our glorious God has laid out for us.

(And besides, it's cutting into my blogging time as well. Which is why I haven't posted in a couple days. I usually blog at night right before bed, but the meds I'm on just knock me out. This is not making me happy! Doing my blog is the one thing I do for me. I can't run anymore. I can't drink my wine. And now I can't write? Oh no, that's not going to happen!)

We're doing the right thing

My husband and I spent another day at the Mayo Clinic in Rochester. From our entire trip, we basically learned that we don't have to travel over an hour to get the best medical care. Not only did the Mayo doctors praise our neurosurgeon and the amazing job he did, but they also confirmed the treatment regiment prescribed by my radiation oncologist. They also agreed with radiation and chemo treatment I had already been given. Furthermore, they agreed that unless my new tests revealed new cancer or new information suggesting otherwise, I would not need chemotherapy (YEAH!)

Except for adding a tumor marker test, and the test for a brain fungus, the doctors at Mayo did not give us any new information. However, we don't feel the trip was useless, as it was reassuring to know that we're doing the right thing, and that's what's most important. It was good to be able to run our plan of action by the experts, and to have them answer our...well my husband's...questions.

Like the second neurologist I saw here in the the Twin Cities, the neurologist in Mayo suggested I have a Lumbar Puncture. I am SO grateful to all the people who commented on my blog or sent me private e-mails letting me know that the spinal tap would not be that bad, similar to an epidural. Just knowing that, erased all my fears, and I went into the test with zero anxiety. And everyone was right; the test actually was not bad at all. I've had blood draws that were more painful. The most pain actually came afterwards. My back is quite sore at the puncture site. But that should go away. And hopefully, the headache that can occur about a day later, will not surface. Because I don't think I could handle a severe headache on top of the ones I already have.

Speaking of headaches....no new information about mine. Aside from the possibility that the headaches could be caused by a fungus, which the spinal tap could reveal, my visit to Mayo did not lead me any closer to a solution to my pain and numbness. I'm just going to keep taking the meds prescribed to me and pray that something starts working soon.

A special thank you to my wonderful mother who without complaint continues to care for my kids, and doesn't even hesitate to tell me to go away and enjoy myself. Although it would have been better hanging out under different circumstances, it was still fun spending time alone with my husband. So thanks mom!

Preparation...for what?

This is not an easy post to write. But I've always told myself that as I write this blog, I will be honest. So there will be times when I'm happy and upbeat. And there will be other times when I'm the opposite. My expression of my feelings are not to try to garner pity or encouragement, it's just a revealing of my emotions at the time I'm writing.

A few weeks ago I wrote a post about how God had been preparing me for my new cancer diagnosis, so that when I received the news, although I wasn't happy about it, I was okay. Because of the nagging feelings I was having on the inside, the things I had read about, and some people I had talked to, God had me ready for my cancer comeback, and I was able to deal with it positively.

But now I have to be perfectly honest and admit that I'm afraid of what God might be preparing me for next.

Lately I've been waking up very early. And if the kids aren't awake yet, I embrace the time that I have alone to have some quiet time with God. This is something I've been lacking in my life; also something I've known for years that I wanted and needed to do. Our paster has preached about this before. Now really, is it that hard to set the alarm 20 to 30 minutes early to give God your first minutes of the day? Is that really too much of Him to ask of us? Through the years I've always prayed for a closer relationship with God, and to have a closer relationship with anyone, including God, you have to work at it. I've always envied those people who say something to the effect about God speaking to them. I never felt that. This doesn't mean God wasn't speaking to me. He speaks to me all the time, but I do feel that to recognize what he's trying to tell me, I need to read His Word and discover all the great plans He has for us. I've been excited to get up early to see what I will learn from God each day.

Except these past few days, I've been nervous about my time with the Lord. For no particular reason, I picked up the Bible and started to read the book of Romans. Each day I read, I try to write down a verse that I feel speaks to me...mostly ones that are encouraging. So I get to Chapter 5. And happily noting Romans 5: 3-5, I start reading verse 12. It says, "Therefore, as sin came into the world, through one man, and death as the reslt of sin, so death spread to all men because all men sinned." And much of the rest of the chapter talks about sin and death. So immediatly I start thinking, "What is God speaking to me here? " and I get a little worried.

But then the next day, as I'm having my quiet time, Romans 6 continues to talk about death. Now mind you, it's all about dying but having eternal life in Christ. And I get that, and it's great and wonderful and something to rejoice about. It's amazing really. Words can't describe the joy I feel about this. But when I sit and think about my family, thoughts of me dying....thoughts of anyone dying...don't make me happy. And so as I read I continue to feel nervous. "What is God speaking to me here?".

Then the next time I pick up the Bible, I start chapter 7 in Romans, and guess what it's talking about? To be more specific, it's discussing how a man and woman are bound by law to be together as long as they live. But if one dies, the marriage law is no longer binding. At this point, honestly, I'm in tears. I'm wondering if all this talk about death is supposed to be preparing me for something. Okay, I shouldn't skirt around the issue, I'm just going to say it. Is everything that I've been reading about death supposed to be preparing me for my own death?
And becasue of what I've read the past few days, I'm afraid to read more. Honestly, I don't want read about death...at all!

I shouldn't even be thinking about dying! I haven't received any medical tests saying the surgery to remove the brain tumor was not successful. I am confident that the doctors are doing everything they to make me cancer-free. And I believe that God is healing me.

I wish I could sit here and write about some positive revelation that I had from God. I wish I could write about something great that I learned from my quiet time this week. I wish I could write exactly what God was speaking to me. But to be honest, I can't. I don't know yet why He had me read these chapters. He had me read many positive, uplifting verses as well

For now, I'm just going to keep reading, and keep praying. Praying for healing, praying for positive thoughts, praying for strength, praying for clarity of His word, and praying for peace within.

I guess size matters

The other day our nanny Sara was changing her baby's diaper. Max was watching her do this, and he became quite interested in what he saw.

"Why is that so big?" he asked referring to little Leo's scrotum.

Sara just told him that that's what little babies looked like (or something similar).

However, Max, who seems to be in competition with everyone lately, couldn't let anyone think he wasn't better or at least equal to this little baby. He had to find something on him that was bigger.

So his next response was "Well, I have a big penis. His is little."

Oh my....and so it starts.

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Last night, even without Ativan, I was able to sleep through the night. Melvin even said that I was snoring! It was the best sleep I'd had since before my surgery.

Now I don't know if it was my new medications, or my full night of rest, but I had a lot less pain in my head today (probably a combination of both). My head was hardly hurting during the day (although I am experiencing some pain now), and I didn't need to take any Vicodin until tonight. The other issues on the right side of my face continued to bother me, including an earache. I'm hoping that the Neurontin that I just started will work this problem out soon.

I forgot to mention yesterday that when I was at Dr. Madavi's (the neurologist), she said that she wanted to order a spinal tap to be done on me. I can't remember if she wanted this to be done because of the spot they found on my MRI, or because of the pain and/or numbness I had been experiencing. To me, it doesn't matter why she said this...all I know is that when she said the words "spinal tap," I immediately shuddered. I actually know nothing about spinal taps, but I heard they stick a needle in your back, and that they're very painful. Dr. Madavi must have sensed my fear because she told me that I certainly can discuss it with my husband, and that I might want to go to my appointment at the Mayo Clinic and see what they say before I have the spinal tap done. Now it's not that I don't trust my doctor, I just don't like pain...any pain! Our Mayo appointment is Tuesday and Wednesday....I think I'll definitely see what they say first.

For now, I'm just incredibly thankful for the rest and since I feel so tired right now, I'm hoping tonight will be the same. Thank you to everyone who has been praying for better sleep for me. God is good.

Popping Pills...a lot of them!!!

I met another neurologist today. She was quite thorough, and she just came across as very knowledgeable and easy to talk to. She didn't seem sad like some of the other medical professionals I've come in contact with....sad meaning they feel bad that this is happening to me. She was more of a "let's get down to business and figure this out"...I liked that a lot.

I gave her my list of symptoms, prefacing them with the statement that I am NOT a hypochondriac, despite what it my list might indicate.

Her thoughts on the intense pain problem mirrored my husbands....nerve pain. I had a lot of nerve pain a few days after my mastectomy. I was given a medication called Neurontin, actually something they give to people with epilepsy. The pain gradually went away, and after a few weeks, I was able to stop taking it completely. Let's pray that the medicine works the same with this new pain. I hope it works quickly as well because although I can't remember exactly how I felt on the medication, I remember saying that the Neurontin was making me neurotic!

I am on so many different medications right now it's just crazy! I finally started writing down each pill I took because I kept forgetting throughout the day when and what I had consumed.

As an example, here's what I took today.

6AM
Tylenol...for my headache.

8AM
Zoloft...so I'm not so crabby.
Indomethacin...for my headaches...what the first neurologist prescribed to me when the migraine shot of Imatrex did not work. If after tomorrow if the headaches aren't better, I can discontinue this prescription.

2:30PM
Vicodin--for head pain and all my other pains. Today my back was hurting more, as was my ear. This pill makes me very sleepy, but works fairly well for the pain.

4:40PM
Neurontin--for my nerve pain...what we hope will stop all this pain. This is my new medicine that I pray works. It also makes me sleepy. This will be great at night, but all these "may cause drowsiness" drugs are going to be difficult to deal with during the day.

5:00PM
Tylenol -- for headache.
Multi-vitamin

6:20PM
Indomethecin-- as stated above, for headaches.

8:30PM
Nystatin--a mouthwash for sores on my tongue. I'm supposed to do this 4 times a day, but I keep forgetting.
Neurontin--as stated before, for the nerve pain. Normally my two doses will be spaced out more, but I didn't get them from the pharmacy until later today.
Vicodin--as stated before, for pain.

As you can see, I'm taking a lot of medications. Just another reason why I am so incredibly thankful that I have my husband to help me figure out how safe it is to take the drugs and the combination of them. I would think I was overdosing taking all these different pills, but having him to supervise my intake of medicines puts me at peace that everything will be just fine.

But my combo of Vicodin and Neurontin makes me VERY SLEEPY. I can barely keep my eyes open as I write this post. So with that, I think I better publish my post and get some much needed sleep.

Goodnight...and gold stars to everyone who thought about my problem today!!!! Thanks for the input!

The medical mystery...possible solution tomorrow.

Still more pain today...but I had it managed with Vicodin, so it wasn't as bad. I also took the Ativan last night. I just decided that I will go ahead and take the sleep pills and pain pills as I need them until all this gets worked out. Because I do need my rest. So if that means taking a pill each night to help me get it, then I'll do that.

I was telling my husband last night that I felt like we were working on a puzzle and that there was one very important piece missing. And if we could just find that one piece, that one bit of information, then we could figure out what was wrong with me. I just feel like all these symptoms are connected, and that all these little actions...pain killers, special mouth rinse, migraine medicine, antibiotic for my earache, etc...all these solutions to deal with each individual problem is not the answer.

My husband said that one of the reasons why no one has figured out a solution yet is because I haven't been consistent in describing all of my symptoms to my different doctors and to him. That's because I have so many different symptoms, I would forget things when talking to the doctor. Or the doctor would just focus on my pain and was mostly concerned about making me feel better, rather than trying to find out the reason behind my pain. Or I'd just address what was bothering me the most at the moment, fearing that I was sounding like some crazy hypochondriac. When I thought about it, my husband was right (he'll LOVE that I just wrote that).

My husband said that by not telling it all, I was making it difficult for any doctor to address my problems. So yesterday my wonderful mother (who has all my appointments and phone calls laid out on organized spreadsheets) typed up a list of all my symptoms. If you're a doctor, feel free to get out those gigantic medical books and do some research. A gold star to anyone with the right answer! Here are the symptoms:

Unbearable pain on upper right side of head.
Unbearable pain on the lower right side of head.
(Note, my surgery sight was on the left side of my head)
Head pain worsens at night or when I'm really tired.
Right eye pain
Right ear pain (no ear infection)
A little dried blood from right nostril when blowing nose.
Right neck hurts...I think around glands.
Feels like sores on right side of tongue.
Right side of tongue a little numb and I keep biting it...ouch!
A little difficult to swallow on right side and hard to move food around in my mouth with my tongue on the right side (I know that sounds silly...but it's true).
Pain on right side of back
Trouble falling asleep
Trouble staying asleep

Okay, now go for it. Any ideas? Come on...you know you need a gold star!

Possible Answer: Once I went over everything with my husband, he immediately said something about Cranial Nerve #7....or maybe it was #6...I can't remember. But it had to do something with the nerve. Which makes total sense to me. I had nerve pain (see Sept. 19 2007 post) after my mastectomy that we dealt with with medicine, and it eventually went away.

Today, my husband was actually able to talk to the neurologist who my surgeon initially referred me to (not the one I went to yesterday). So I'm hoping tomorrow to have some answers...and to be on the pathway to being rid of all this ridiculous pain.

In the words of Shakespeare...To sleep, perchance to dream

I continue to have sleep and headache issues. First of all, as I think I stated before, I can't sleep. Ever since I had my surgery, I just physically cannot sleep. It's not nerves or anything like that. I will be wide awake, fall asleep for about 40 minutes, and then be wide awake for hours again. However, although I'm awake, my body and mind are tired. It really took its toll on me yesterday. As the day drug on, so did I. And although I could not sleep, I also could not think or process information very well, no doubt as a result of not sleeping. I read a blog about someone else who has brain tumors, and she too could not sleep. She takes Ativan so that she can sleep now. I do this occaisonally, but I hate to keep taking a sleeping pill, along with all my other pain meds.

The biggest problem I have when I don't sleep is that my headaches worsen, which of course makes it even harder to sleep. It's a ridiculous cycle. Once the pain starts, which is incredibly unbearable, it won't go away, even with Percocet. I had an appointment with an internal medicine doctor today for some slight sinusitus that the MRI showed...which I don't have. (And the entire time the doctor is talking to me, he's mumbling in between his sentences, "Oh God bless you. God bless you," in his Saudi Arabian accent. He makes me smile.) After I told him about my pain and sleep issues, he immediately sent me to see a neurologist. (Thank you to nurse Sara for driving me down the street to my appt while my mom had the kids at McDonalds).

I was go grateful to get in to see the specialist immediately because I was in so much pain at this point I was almost in tears. Plus, last year when I was making an appointment for Cameron with a neurologist, it took me over a month before the neurologist had an opening. This is doctor was also very kind and concerned about my pain and just very concerned about all that I had been through. He actually took my hand and asked me how I was doing with all this, and I told him that except for the pain, I really am okay with everything. (He also had this big gold ring that said, "Dad" so I imagined anyone who'd wear a ring like that must really love his kids, which made me like him even more, as a person).

For the pain he gave me a shot of Imitrex, which is what they give to people who have really bad migranes. Unfortunately, it didn't do anything for my headache. And the doctor didn't have an answer as to what would be causing this pain. Quite the medical mystery I am I guess. He sent me home with another prescription that may work to take away the headaches, but overall, I have no idea as to why I'm having these. I don't want to keep popping a bunch of pain killers. There has to be a reason for this. But not even my neurosurgeon, who my husband called last night, had any ideas as to why I'm having these headaches. Maybe someone at Mayo can shed some light next week because I'm really tired of this dominating our lives. I couldn't even go to Cameron's football game today, because of the pain, and he was really sad about this, which in turn made me really sad.

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On a completely different subject, a couple people have asked me about some messages that they sent me....messages I have NO recollection of. The first two weeks after surgery, I was so drugged up, or so filled with anxiety, that there were a lot of e-mails that I think I read, but never actually processed or remembered. So if it seems like I'm ignoring you, really, I'm not. And I apologize sincerely. If you pop me a note again, I'll try to answer it this time...if my head doesn't feel like it's in a vicegrip! (I'm only able to write now because my Vicodin has kicked in quite nicely).
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Football season has begun for Cameron. That is a post in and of itself, but for now, I'll just say that HE is loving it! Thankfully I have WONDERFUL neighbors who told me that they will take him and bring him home from every practice and game, so that I don't have to worry about that at all. I still try to make at least his games (which are 2, sometimes 3, times a week), but I know I won't be making all of them...like tonight's game. Now I'm not trying to buy forgiveness from my son, but I know that he'd be SO excited if I got him something to wear from his favorite team....the University of Minnesota Gophers. Plus, my husband just called and said he got a touchdown...his first one...so now I'm really bummed that I missed his game. But anyhow, I'm looking for a Univ. of Minnesota fall ZIP-UP jacket for him to wear. He's about a size 8. So if anyone happens to come across one, can you please let me know. I'm going to go online tomorrow and see what I can find. THANKS!

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Moreover, let us exult and triumph in our troubles and rejoice in our sufferings, knowing that pressure and affliction and hardship produce patient and unswerving endurance. And endurance develops maturity of character. And character producs joyful and confident hope of eternal salvation! Such hope never disappoints or deludes or shames us, for God's love has been poured out in our hearts through the Holy Spirit Who has been given to us.
Romans 5:3-5

You're back....but so am I!

One year ago today I had a mastectomy of my left breast. One year ago today started all the treatments...the surgery, then chemo, then radiation...of this cancer that was just supposed to be done with. My approach to my cancer was to get rid of it, do everything I could so that it didn't come back, and then work on making myself look normal again. I was going to deal with it, and then move on with my life as if I was never affected by cancer.

HA! to me!!!!!

You know some people get cancer and it is life changing for them. For me, it really wasn't. I just wanted to move on and forget about it. It's sad to say, but I didn't feel like I had learned any life lessons or learned to appreciate anything more than I did before cancer. I didn't feel any stronger; I didn't feel like I had some new lease on life. Although my faith and my relationship with God certainly did strengthen greatly, and I met a lot of wonderful and helpful people, but other than that, life was the same for me. And that's how I wanted it.

HA! to me!!!!!!!!

But I do believe that God was completely preparing me for what has come. I'm not going to get into a discussion of whether this was God's plan or the result of us living in a fallen world or the work of the Devil or just some fluke or what not. None of that really matters. My pastor did a great sermon a few weeks ago about whatever the cause of the suffering...it doesn't matter because God shows up in the midst of it. That He will be there no matter what you can count on. (You can actually listen to the sermon or watch the video here . Scroll down to 7/6/2008 to the sermon entitled Held by Greg Boyd. I highly encourage you to listen to it).

There were little things that helped prepare me for the return of the dreaded cancer. I had written on my July 25th post about my sudden newfound concern for cancer returning after reading a couple articles about it reoccurring in other people. And some of my friends can tell you that I was expressing this fear to them as well. So it was then, after about a month of really worrying about it, before I had any symptoms of my tumor, it was then that I made peace with myself about the cancer coming back. I still had that nagging feeling in the back of my mind, but I just prayed about it and just decided to be at peace with it.

I even wrote on Aug. 9th in the comments of a blogger Ann who had written about my situation on her blog here . I responded "Thank you for your very kind words. With my faith in the Lord, I really do feel like I have Someone else to help me through all this...literally pulling and pushing me along. Knowing that with Him, I really could face whatever was thrown at me. On a different note, I do believe that facing cancer is easier than the daily struggles we often face as moms...and the struggles are different for each mom. What an important job we have as mothers, and the ramifications of every decision we make, all affecting our childrens' futures, is sometimes very overwhelming to me! But aren't kids amazing...and so worth it!" My response to her was different than I probably would have responded even 2 weeks prior. One, I usually don't testify about God to people. It actually took a lot of effort for me to say to people that I was praying for them. I don't know why. If God was supposed to be Lord of my life, I certainly shouldn't be so shy to express that. Now I'm not an evangelist...I'm pretty sure that's not my calling. But I do feel that God was beginning to really work within me to really feel comfortable with my faith and expressing it better so that I could truly cope with what was to come.

Secondly, I noted in that comment above about kids being amazing and just worth it. Really, that is NOT something I would have said before. I mean, of course they're worth it, but I didn't always feel that way. I felt more frustrated by the "dailyness" of motherhood than actually enjoying it. Everything seemed like one big chore, and I wasn't enjoying any of it. But as I said, the Lord was preparing me. Because when I had that notion in my mind that the cancer could come back, something changed inside me. I suddenly started just enjoying my kids more. I stopped caring so much about trying to get the kitchen cleaned up right away after dinner and I started going outside with them and just hanging out. I started rocking Ella longer at night and just holding her and really feeling her joy. Even doing things like getting my kids breakfast when I really wanted to just be back in bed was actually enjoyable to me. I even came to the decision that I was not even going to look for another job to help satisfy that "I'm a teacher...I gotta teach and touch the minds of the future" craving that I have always had. For the first time ever, I must say that I was very content with not working and being able to stay home with my little ones. And as I said, this was BEFORE I knew about my brain tumor.

So God had certainly prepared me for when my tumor was found. Now I'm not saying that I was all happy and such. Of course I cried, and I was mad, and sad and frustrated and confused and defeated and a whole bunch of emotions all combined. But overall, now I can sincerely say that I'm at peace. I'm at peace knowing that all will be well. I'm at peace knowing that I have amazing people working on me and fighting with me and praying for me. I'm at peace with the fact that God will be there and hold me and my children and my husband. And at the end of it all, we will be winners.

And now one year after my original surgery, I must say HA to cancer. Because yeah, you're back. But so am I...and thanks to the Lord, I'm better than ever!

Say it ain't so!

Yesterday was my best day yet, in terms of energy and just feeling great and normal.

But last night was my worst night in terms of pain from my headaches. Not even the Percocet did anything to take away the pain. This is the first time I was brought to tears it hurt so badly.

I will be visiting with a neurologist sometime next week. And during the following week, I'm going down to the Mayo Clinic in Rochester to get some 2nd opinions about treatment options. I'm hoping one of these doctors can address my headache issue.

My husband thinks the headaches were so bad because I had a glass of wine last night and that I really should not drink anymore wine. SURELY there's another explanation. If not....um....um...I just need to remain speechless on this issue right now.

Update: Good news...I had more unbearable headaches last night. So what's the good news? That means it wasn't the wine causing them...hey, gotta look for the good somewhere!


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Have you not known? Have you not heard? The everlasting God, the Lord, the Creator of the ends of the earth, neither faints nor is weary. There is no searching of His understanding. He gives power to the weak, and to those who have no might He increases strength. Even the youths shall faint and be weary, and the young men shall utterly fall. But those who wait on the Lord shall renew their strength: they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint."

Two weeks since surgery

This week I met with Dr. Vic, my radiation oncologist. Can I just say that he is so smart! Actually, I just have to take a moment to be in complete awe of doctors...period. It's hard to even express how incredibly smart doctors are. Before my surgery I had some procedure where a doctor was looking at all my blood vessels, and maybe it was the Valium, but I just kept thinking WOW, these people are just so amazing. Meeting my husband as he began medical school gave me the opportunity to see just how much work, how much studying, how much passion goes into being a doctor. And of course all doctors aren't perfect, and everyone has had different experiences, but I will forever be in complete debt to doctors and have nothing but honor for them.

So much has happened this week, so this post might be rather long.

As I mentioned, my husband and I met with my radiation oncologist early this week. Besides being amazingly smart, Dr. Vic is also incredibly kind and explains things so well to me (but as usual, don't expect me to reiterate information with any kind of medical accuracy or flair!). He was so apologetic about the cancer being found in my brain. I was joking with him to lighten the mood, "Doctor Vic, this wasn't supposed to happen. I'm supposed to be all done with this stuff." (The Zoloft I'm taking actually is working quite well). There's no need to be all sad about it. Let's just figure out what to do about it. Apparently it's really good that I am so ignorant to all the medical stuff that's happening. It's my poor husband who for his own sanity could probably use a little less knowledge merely so he wouldn't worry so much.

The basic treatment they're going to do is whole brain radiation. Just like when I had radiation for breast cancer, I will go everyday for about 5 1/2 weeks, minus the weekends. The actual procedure doesn't last long...I think I get zapped for 10 to 15 minutes at the most, and it's completely painless. The side effects vary. I can certainly have brain damage...which I already have from the surgery, (still dealing with a lot of time and number issues) but the doctor doesn't anticipate anything major. When I get radiated, they put this hard plastic mesh mold snugly over my face and secure me to the table so that I can't move. It's quite creepy looking...and I'll have to post a picture at some point. I can get fatigued, which I experienced a little bit of when having radiation for breast cancer, but with brain radiation, I don't know how the fatigue will compare. I also will have some irritation of the head. And then here's the doozy...what I didn't want to hear, but what I knew was coming...I'm going to lose my hair. Oh well. I'm alive. So in search of some very sassy hats and scarves again. Because I'm just going to be vain with my new little motto 2cute4cancer!

As I posted yesterday, the MRI I had yesterday was a bit hellish. They wanted to look at my spine and my brain again. The doctors keep ordering these tests telling me that they don't intend on seeing anything. But don't ya know, a spot turns up on my spine. Now having a metastasis to the spine is really bad. It would involve more chemo and radiation I'm sure, and I'm not sure what the cure rate is for something like that. So my husband was really upset today about them finding something on the scan. But he was able to have a bunch of doctors read the scans and they are pretty confident that it is NOT cancer. They think that the spot they saw was a hemangioma. That's a blood tumor that is benign, and something I should not have to worry about. My doctor might order a bone scan, but probably not. They will continue to monitor the blood tumor, but for now, it is fine. Praise God for that.

Today I got to meet again the doctor who took out my tumor, Dr. Jerone Kennedy. So what in the world is the protocol for this? Send a Hallmark Card note, "Um, thanks for saving my life. Hope I can return the favor!" Seriously, how in the world can I express my gratitude? I am actually looking for ideas. Also, I still need to do/send something to the floor that took care of me while in the hospital as well. But I just don't want to send some thank you flowers or something...would like to send something more useful and meaningful if I can. I talked with Dr. Kennedy about some of the issues I've been having lately, mostly my very painful headaches. And basically, everything just needs to settle in and work itself out. I have a couple appointments with different doctors, including a neurologist, to deal with some of these issues. Glad I have some experts to refer to now.

Some people have asked me why I'm still having all these tests? Honestly, I am so ignorant to them. These past two weeks I have walked into offices and just basically have been at everyones mercy. I have so many different scans, I can't keep them all straight. I just go in, do what they tell me to do, and let my husband sort out all the details for me. I know it's bad. I really need to be on top of my own care. I really need to be more proactive about understanding things. But for right now, I can barely figure out what time I need to leave the house so that my son gets to his football game on time. Maybe I can have my husband be a guest medical blogger and explain the difference between and MRI and a PET scan and why some tests pick up cancer and others do not...maybe he'll do it for me.

I've also had some people ask me about how this will affect my reconstruction. My what? That's what I think to myself. My reconstruction is so far from my mind right now I can't even think about it. But I actually have to...at least the preventative mastectomy part of it. That still needs to be done, and I feel now more than ever. So I'll make the appointments for everything in February probably. Now whether or not I'll be able to follow through with all the procedures we'll just have to see.

Continued thank you for EVERYTHING!

Painful

I had an MRI yesterday of my head and spine. It was a 3 1/2 hour MRI. Which means I had to listen to jackhammer like noises reverbrating throughout my already aching head for 3 1/2 hours, while I had to lie completely still. They did give me 2 bathroom breaks, and I guess when it took them 4 times to inject some dy in me one could call that a break as well. It was not a fun day.

Cameron's First Day of 2nd Grade

Today was a MUCH better day. It was as if all that pressure that had been building up in my brain finally let loose, and I could actually start to think again. I still experienced some headaches, but nothing like I had been the past few days. I wasn't feeling as dizzy or as anxious. (But I also managed to stay far way from Target!). Staying around the house and resting today really did the trick. Your prayers are working! THANK YOU!

Cameron had his first day of school today. Poor kid had to deal with my negligence! I hadn't gotten around to getting him a haircut yet, so he struggled with trying to make it look like something other than a birds' nest.

This is the nicest thing I could get him to wear today.

Max and Ella were excited to see him get on the bus. Here he is with his friend Patrick, his bus buddy and classmate again this year.


And finally, here he is getting on the bus with his big heavy backpack. Like I said, I was somewhat negligent this year in that I didn't send him to school with his supplies until the first day. So needless to say, he had a very full and very heavy backpack. But hey, at least he did have all of his supplies, gym shoes and all.

Here's to a wonderful year in 2nd grade Cameron! Love ya kid!!!!!!!!!!

Thankful

Tonight I decided that despite all this anxiety, uneasiness, dizziness, fogginess and confusion floating through my head, I just really need to take a moment and be so incredibly grateful to just be alive right now! I mean a little over a week ago my brain was exposed. Any kind of complication could have occurred, leaving me lifeless. But through medicine and the healing powers of Jesus, I am here today. And I really need to relish in that fact.

I made it to church today, and it just felt good to sit there and let the music just wash over me. I must admit, I have no clue what our assistant pastor was talking about half the time today, but I just felt God's presence and needed that sense of peace for the small amount of time that I was there.

After this holiday weekend, I'm getting myself on the phone to whichever doctor I'm supposed to be linked with now and we're going to figure out what's going on inside this head of mine. Surely this isn't some permanent condition, and we're going to figure it out...we are. Because I need me back.

Overwelmed

I continue to experience very difficult anxiety. I can't even write about it tonight and just want to ask for some prayers.