Sunday, September 25, 2011

I'm a worst case senario

Hubby and I decided to look into alternative treatment. We're planning on driving up to Tempe, Arizona to check out Dr. Joe Brown. Here's a LINK to his site. He cured himself of cancer when they gave him about 30 days to live. That was approximately ten years ago.

My current doc/oncologist calls all alternative treatments done by quacks. He hardly answers our questions about other treatment possibilities and even interrupts us to where we can barely finish a sentence. My husband finally asked him not to make fun of us, that we're simply desperate and need answers. We're not doctors and know everything like he does. He didn't say that last sentence. I'm just frustrated, and so is Karsten. Anyway, he's a good doc, but he's overworked, which is why we keep running into all this miscommunication, having to postpone appointments, etc. And now he's suggesting more chemo and radiation.

Because he already gave me chemo that would "kill a healthy person," I'm refusing to do anymore. I mean, if that chemo didn't do the trick, why would another "brand" help? The chemo never helped the tumors. I will, however, do the radiation. I have a feeling it was the radiation that actually cleared the tumor in my head, and not the stem cells. 

Here's why:

The doc said it would take a couple months to be able to see whether or not the radiation worked or not. We weren't able to wait that length of time, so we did the radiation, the chemo, and the full-body radiation, and then the bone marrow transplant (which I found out later was/is actually a stem cell transplant from an ADULT donor; they said they use the term bone marrow because "stem cell" has such a negative implication, where folks assume we're using embryonic stem cells, which I would NEVER do). Anyway, now that the transplant is done, I can see that the tumor in my head is nearly gone. But now I have a tumor on my spine?! Why would the stem cells attack the tumor in my head, but not in my spine? It doesn't make sense. So, that's why I think the radiation took care of the tumor in my head and not the stem cells. 

Another reason I think the radiation took care of my tumor is because the stem cells are being suppressed by all these drugs I'm on. The doc is very fearful of graft vs host disease (where the stem cells might attack me), so he wants to prevent that, and he does that with these drugs. I kind of feel like the stem cells haven't even had a chance to WORK. But hey, I'm not a doctor, so who knows. I also think it could be these drugs that are causing my liver to skyrocket in enzymes. The liver biopsy tests came out negative for the graft vs host disease, but the doc felt certain I had it because of my liver enzymes going up. Isn't it possible my liver is acting up because I eat pills for breakfast, lunch and dinner?!

I say all this, but what do I know? My doc has 30 (yes 30) years of experience, while I have none. 

I'm just in the worst position I could possibly be in. The alternative doc will want to up my immune system, but then we run the risk of my (the donor's) immune system attacking me (which this doc is aware of; he's had experience working with stem cell transplant patients). And what's especially scary is that graft vs host disease could kill me and could rear it's ugly head overnight. I could wake up with a major case of it. At the same time, these new stem cells are what we've counted on to kill the cancer! 

What to do, what to do? 

Although my doc suggested chemo, he only hooked me up with the radiation people. I don't know if that means he's not going to do the chemo, or if he's going to do it later. He hasn't communicated anything to us. Oh, and that meeting I told you he was planning to attend to talk to the whole oncology team about my case, he never made it to. Do you see my frustration? sigh 

If I do nothing, this cancer will eat through my spine and make me lame from the waist down and eventually kill me. If I go with the alternative doc, I could get a bad case of graft vs. host disease, and that could kill me, OR it will get this new immune system working to where it attacks the cancer and not me, and I'd be CURED. Or, I could just go with the radiation treatments and hope/pray that works and see what happens and hope/pray that eventually my new immune system will kick in despite all the immune suppressant drugs (btw: I got cancer from immune suppressant drugs to begin with!) and kill the cancer.


What a mess I've become. 

Monday, September 19, 2011

“This wasn’t supposed to happen.”

That’s what my friend said. I mean, after all, I was supposed to be cured of MS and cancer. Right? That was the plan. That’s why I ended up with this particular doc because he wrote the paper with the doc who uses this method to cure MS. It couldn’t be a coincidence, God must have brought us together. At least, that’s what I thought.

I don’t know a gentle way to put this, but my doc says the biopsy results on my spine show that I have cancer. The same stinkin’ cancer that was supposed to be wiped out. He said this was his worst fear because this type of cancer is “clever.” It knows how to hide and that’s what it did. The doc wiped out my entire immune system and I even have someone else’s cells and blood-type now, but the cancer managed to stick around. The doc is going to consult the entire oncology team tomorrow/Tuesday and decide what to do: chemo (a different brand, which will be outpatient) and/or radiation.


Yes, I’m being sarcastic. sigh

The worst was telling my kids. My POOR KIDS. I won’t even tell you how that went. It’s too painful.

I asked the doc what my chances are, and he wouldn’t give me a percentage. He simply said something along the lines of, sometimes he beats the cancer, and sometimes he doesn’t. Something like that. Anyway . . . .

I’m still trusting in God. I told my kids to do the same. That this life is temporary, and really, Satan just wants our souls, and he’s trying to get to them through me. I told them they’re to remain faithful no matter what happens. If they’re mad at God for allowing this, that’s okay because God can handle our anger (He invented the emotion for crying out loud), just don’t sin. I told them to talk to God about their feelings because He knows and He understands. But don’t blame God. Satan is to blame for this. Just REMAIN FAITHFUL TO GOD period. I told them if I don’t make it through this, I want us to be reunited in Heaven—so they better remain faithful. I guess, I’m saying the same thing to all of you who read this.

I’ll do my BEST to FIGHT this, but I’m tired and I’m angry and I’m sick of fighting. I’m tired of asking for all of you to pray for me. I can imagine you all are probably sick of praying for me too. You’d think God would be sick of hearing from all of us and just give us what we want. Ya know? You’d think He’d push us out the door and kick us off His door step and say, “Fine! I’ll heal her, just leave Me alone! Quit ringing my doorbell!” You’d think we were more annoying than those telephone solicitors. They’re the worst, aren’t they?

Anyway, please keep praying for HEALING. My kids would really appreciate it. As would I and my husband.

When I say I trust in God, know that I mean I trust He knows what’s best for all of us spiritually (well, and physically, of course). He is my God and deserves my (our) praise.

He was, He is, and He always will be!

I praise You my Father, my Lord, my Master, my Daddy. I long to be held by You. To touch You, to breathe in Your Majesty. I LONG for it!

But I humbly ask that You will allow me to stay longer on this earth for my kids. You know how much I hate it here, so I don’t ask to stay for selfish reasons. Unless begging to be able to raise my kids and teach them to love You is selfish?
No matter what happens, I will praise You. (I imagine that’s a good kick in the face to Satan, right?)

Then . . .

Praise the Lord! Praise the Lord! Praise the Lord! Thank You Jesus for dying on the cross for my sins. Thank You for all You’ve done for me. Thank You. Thank You for my precious children. Please take care of them, guard their souls, teach them to love You (preferably through me, e-hem). Please God? Please? . . . Please . . . .

I love You, Lord. I love You so much. Hold me close and don’t let go.

Keep the faith, everyone. Please keep the faith. Cling to the Lord. He loves you. He loves me. And He loves my kids.


Now why do you delay?
Get up and be baptized,
and wash away your sins,
calling on His name (Acts 22:16).

Sunday, September 11, 2011

What I remember on September 11, 2001

I was living in Holland (the Netherlands) at the time and just happened to be watching CNN. I watched the entire thing unfold before my eyes. The newscasters went from reporting ordinary news to “this just in” and there were the towers. They showed the first plane hitting, and while they debated whether or not it was an accident or on purpose, the second plane flew into the next tower. Not long after that, I watched both towers go down. I couldn’t believe it. When I was eighteen, I’d stood on the roof of one of those towers, and those buildings (after collapsing) would have wiped out the entire center of Amsterdam. How could these “little” planes have such a huge impact?

What was especially disturbing during this time was the fact that I was outside the US and had to witness first hand (in my face) the reaction of the middle-eastern students and Islamic leaders. They were cheering in the streets!!! For days!!! And I won’t repeat the hateful things they would say. Gulp!

I was also concerned about our neighbor, wondering if they were also cheering about what happened because they were also Muslim and from Afghanistan. Of course, they knew we were an American family (our kids played together), so I was hesitant to knock on her door. A few days after the attack, she came to my door. She told me that she had family in New York and had no idea if they were safe or not because she couldn’t reach anyone. Anyway, she was suffering with us, and I felt ashamed for not having been the first to reach out to her. Later, it turned out her family was safe and all was well.

Months after the attacks, we still had to be careful, avoiding Islamic neighborhoods that had signs hung up on shop windows, saying things like: Yankees Go Home, etc. That was in Antwerp, Belgium. My husband made it clear that we were not to speak English outside the home (although, all the neighbors in our little village knew we were part American; my husband is Dutch; and we had three young children at the time). But we followed his orders. No more English outside the home.