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. 


  1. Sandi, my prayer for you is for wisdom. Doctor's aren't God. Cancer is still an unknown. Chemo and radiation aren't guarantees for curing anything. You've already done what you can through conventional methods, and so has the medical field. Maybe it's time for something else.

    When my husband's sister was diagnosed with leukemia back in 1979, his folks heard all the same pitches you've heard. When one chemo method didn't work, they were pressured to try something else. My in-laws listened to the doctors because, after all, they were the experts. Right? However, within 8 weeks of diagnosis my sister-in-law died. Not from leukemia but from the chemo. There was no "oops, sorry" or sense of remorse from her doctors. Nothing. At one time my in-laws even wanted to try an alternate way of treating their daughter's cancer, but were told by their doctor the same thing you were: "No."

    I'm sorry, but someone who has been in remission for ten years doesn't sound like a quack to me. Just saying. Anyway, I know you have a lot of choices before you, but from what I've read on your blog over the course of time, I sense some of the methods used have put a check in your spirit. That's why I'm praying for wisdom.

    Medicine can be amazing. But regardless of its wonderful powers, our LORD is the only real healer. He uses the tools He gave man to help cure all kinds of illnesses. But sometimes man gets a big head and starts to think he is God--especially (it seems) when it comes to the medical industry.

    You are a child of the King. You know His voice. You know how much He loves you. We love you, too. Don't make yourself crazy with the "what if's." Listen to that still small voice telling you which direction to go, even if it doesn't make sense.

    I'll continuing to pray for healing...but am also praying that the enemy's voice is silenced so that you can absorb all the beautiful wisdom God is about to impart on you.

    Oh, and BTW, you're not a mess. You're amazing!

    Hugs and love,

  2. Jill, I'm still so weak from everything, I was thinking the treatments were gonna kill me before the cancer does, so to hear about your sis in law, it confirms my gut feeling. Thank you for sharing. And I'm so sorry to hear about your sis in law. Both Karsten and I are keeping our eyes and ears open for God's leading. xxx

  3. Sandi, my prayers are with you. Alternative medicine gets the same rap self-publishing does, but that's doesn't mean it doesn't work. My grandfather who was a pharmacist utilized many natural remedies and helped many people along with his ministry. I'm certainly praying for strength for you and your family.

  4. God can use both alternative medicine and regular medicine. The good news is, He can also heal you without the help of any medicine because he is still the Almighty. Rest in His care knowing that He has not abandoned you. I am praying for a medically unexplainable miracle knowing that God is still God and He will give you peace no matter what.

  5. Sandi, we've never met, but I've been praying for you every day since you shared your diagnosis last year. I was diagnosed with uterine cancer in June 2010 and have been cancer free for 15 months. Last week, I learned that I may have breast cancer. When faced with uterine cancer, I drove myself crazy with worry. The enemy loved that. So, this time, instead of allowing him to scare me and get in the way of my relationship with the Lord, I'm making my priority shutting out the enemy's voice. With every "what if" he plants in me, I imagine shoving him away. If nothing else, it's helped me not to focus so much on the cancer. My job is shutting Satan out so I can trust God. The disease and the healing part belong to the Lord.

    Don't you let Satan get to you! He can't control your thoughts if you don't let him.

    I pray that you will find peace as you seek treatment. I know that you're so weary, You're not a mess. You're a dear Christian sister in the middle of a nasty battle. You are loved and being held up in prayer by so many.

    I'm continuing to pray for your complete healing.

    Hugs and blessings,

  6. Sandi,

    My heart and prayers go out to you and your family. I have a friend who went through chemo with two breast cancers. No bone marrow transplant. She did almost everything homeopathic that she could. I would like to refer you to her and talk it through. It may give you the encouragement you need. She's a Christian that believes in natural products where possible. If interested, please contact me. I'll write her to let her know you may want to touch base.

    desertrose5173 at gmail dot com

  7. Oh Sandi, I so wish you didn't have to add frustration with your doctor to all you're going through. I will pray for a strong feeling of peace for you when you make the next decision; a clear leading from God and comfort found in His shelter.
    love you,

  8. I emailed my friend without your name, and she'd be glad to 'talk' to you. Let me know, and I'll set you up with her. She may be able to answer some of your questions.

    desertrose5173 at gmail dot com

  9. Praying for wisdom and clarity in this discouraging and difficult time! Some of the best doctors in their fields have the worst "bedside manners"! I'm happy to trade their poor interpersonal and communication skills for their medical ones, as long as I believe I'm getting the best possible care. If I'm not confident of that, I wouldn't hesitate to ask for a consultation with a different oncologist. I think naturopathic medicine can offer a helpful supplement to more traditional methods of treatment, but I'd want to be sure my specialist was aware I was embarking on the alternative program.

  10. You aren't a worst case anything Sandi - you are a marvel and I admire your indomitable spirit. When my mother-in-law received brutal chemo for ovarian cancer, the doctor told us that, 'In fifty years, they will call us barbarians for what we do to cancer sufferers. We don't know what we are doing, we simply throw everything at a patient and hope something works.'
    So do what you feel is right - who knows what will work and what won't - I think we caught that doctor in a weak moment and he told us the truth - the medics don't yet know enough.