News, News, and then... more News

I'm going to break this up into a few posts, because some of it is really, really important. I don't want anything to get buried and go unnoticed. And I don't want to get sloppy or forgetful in my reporting. And most of all, I wanted to make sure that I wasn't letting things get overblown in my head, so I waited to talk about this until I had some evidence to back up what I was saying.

So here's my story. At least, here's a part of it.

Let's go back a bit, back to December of 2009 and January of this year. If you look at my posts from that time, you will see that I had a big progression of my cancer in the autumn, and that between the progression and the Aromatase Inhibitor (Aromasin) that I was prescribed in November, I was having some problems.

I was understating the problems in my blog, actually, because I didn't want to be too much of a Whiner or a Downer. Well, let's face it, what I did write was Downer enough. I hated being where I was; I didn't want you to hate what I was.

I was basically feeling about 40 or 50 years older than my current half century. I could no longer walk normally - the bone pain in my hips was getting worse by the day, and not only could I barely hobble a few feet, but my left hip/leg was so weak that I couldn't even get it into the car on its own. I had to literally pick my leg up using my arms and lift it up. Getting out of a chair was a struggle that I feared I would lose at any moment. I couldn't run errands, because I couldn't carry anything without putting more weight on one hip or the other.

Really, I couldn't do anything; either it was physically impossible, too painful, or I had to be exaggeratedly careful for fear of breaking my fossilized coral reef of hip bone.

I couldn't get relief by sitting or laying down, and sleeping was impossible. I tried various pain and sleeping medications, but they gave little relief and had unpleasant side effects. I was lucky if I got an hour of exhausted napping in during any 24 hour period.

Which, along with my prognosis, left me in a clinical state of depression and anxiety. I was literally spending half of every day in tears. I felt that I was dying. Before that, I knew that I was dying. I know it now. But knowing it and feeling that you are doing it right at that given moment - those are two very different things.

There were other distressing side effects from the AI, and some were worsened by the Metformin I was taking for the diabetes - joint pain, debilitating headaches, weight gain, bloating, abdominal pain and gastrointestinal dysfunctions of various unpleasant sorts, muscle cramps, nausea, fatigue, brain fog, skin problems (I'm 50 and have 'cradle cap'), hair loss. All of that is less than fun, certainly - but the bone pain and the depression were the worst, were what sucked all the joy and life right out of me.

And I couldn't whine about it too much. It stresses out the people who love you and who can do nothing to help you. It doesn't help relieve the pain, and the return on the investment goes down with use in terms of emotional release. And, you know, it's not a very successful ploy in terms of getting people to sit next to you at social gatherings.

So that's where I was during the Holiday Season. Not too good. And from what we could tell from the size of my palpable tumors, things were still roaring along in my little Internal Garden of Yuck.

So then came my post of January 13th. Which is when, after a year of me pestering my doctors about it, I finally got one of them to prescribe Low Dose Naltrexone. Because of the fast and furious progression of my cancer, I was allowed the off-label prescription on a 'compassionate use basis'. Because, you know, what was it going to do? Kill me?

So that's where I was on 1/13/10. I'd been taking LDN for a couple days, and at that time, mostly it just made me feel a little jittery at night while I was attempting to get a cherished microsecond of beauty sleep.

Within a few days more, the tumor in my chest was shrinking. I was sleeping just fine, thank you.

And the bone pain was nearly completely gone.

More in the next post!


Dawn said...

Eileen, It sounds like your feeling better? I hope the rest of the tale continues that road.

Roberta said...

That is fantastic...I've asked about it...they (the group of doctors handling my mess) And we have to wait until my liver enzymes stabilize a bit. Kidney function is a little off and I've had a few small acsites. But I am nagging them about it.
I am so glad you feel better.
The holidays kind of sucked for me, too...but we get by.
Have you had the scan? What were the results?

My next scan is the end of the month.

Waiting waiting...story of our lives.

Love to you and yours, sweets. And don't worry about the hair. I kind of enjoy people asking who's that boy next to Richard? It makes me laugh.

Delighted Hands said...

Ground breaking stuff......thanks for your perserverance against apathy.

The Violet Hoarder said...

I'm about to jump up and down--should I wait for the next post or can I just conclude that things have turned around for you? That you're feeling much better? Happy St. Pats to you...and let us here more good news!!!