Saturday, March 16, 2013

Health update: or my life as a pelican

This was a week for my 'three month visits": I saw the oncologist and the retina specialist.  If you are interested in the details, see below. Otherwise, the short version is that I am clear of cancer, still fighting birdshot, and checking on various and sundry other avenues to help me feel better.  In short, God is good. Thank you for your prayers!

I sometimes feel like this pelican I saw in Florida: all puffed up and not wanting to move. But as I focus on the blessings God provides, I can keep on waddling.  And sometimes I can actually soar above the waves. I am trying to focus on those soaring opportunities.

For the detail-inclined:
  • No sign of cancer #2 at more than a year out (hurrah!), staying on the anastrozole, and having a base-line ultrasound of my chest wall so we can tell the scar tissue from anything else should that ever be necessary in the future.
  • Confirmed with the rheumatologist that though my vitamin D levels are low, I should NOT supplement due to the likelihood that I have sarcoidosis (though it appears to be quiescent at the moment- also hurrah!). Vitamin D get processed strangely by sarcoid patients, and can lead to poisoning.  Let's definitely avoid that.
  • Still tracking down whether to do an ACTH stim test to determine if I have adrenal insufficiency or not.  This is my oncologist's quest to address my fatigue issues.  We'll see what comes of it. 
  • The birdshot has not, unfortunately, stopped making the blood vessels in my eyes "leaky".  So despite the higher dose of cellcept, we have no improvement.  As soon as I can lay my hands on some, I will add cyclosporine (Neoral) to my daily cellcept dose.  I would appreciate prayers that we would not see side effects from that, but would see the birdshot move to inactivity.  That is what we are looking for.  Our goal is to stop the leaking/retina damage and remain stable./  If we can do that and stay there for 1-2 years, then i get to wean off the drugs and see if I can stay there without them.
  • I found out from the retina doc that there are a couple chemo-type drugs that are possibilities if the cellcept/cyclosporine cocktail doesn't do the trick before we have to move to some rather grizzly surgical options. (Particularly humira or remikade.) While I am praying not to have to go that route, I love that I have choices before the surgical one.  God is being very good to encourage me in this.
  • When I get very disappointed or discouraged with all this, and with the way I feel  on all these drugs, my sweet husband reminds me that these drug side-effects are better than having cancer or going blind.  And he is right.  I am too ready to forget God's blessing to me.  If i had lived even 25 or 30 years ago, I likely would have been dead by now.  So God must still have a use for my waddling self here, and I delight in the blessings He brings my way every day.  one of those blessings is you, Gentle Reader!  I would love to hear from you any time!


Jenifer Hanson said...

I, for one, am grateful God has a use for you here! I love you Sister, praying for ongoing improvement.

Juanita Stauffer said...

Continuing to pray. Thanks for the update.

Natalie said...

Just catching up with blog reading. So glad to hear you are cancer free and I am praying for improvement for you eyes.