Monday, July 08, 2013

Part Two; Trying To Put The Milky Ways Down

Ok, I've recharged the batteries a little.

In the aftermath of admitting to myself that my cancer was back, I did every wrong thing.  I stopped going to the gym.  I slept more.  I subsisted on frozen Milky Ways.

But mostly, I thought about what I would do when Dr. Miller got tired of "waiting and watching".  A second transplant seems a ridiculous idea.  The general consensus as far as I know, is that subsequent transplants get you half what an initial transplant does.  If you are an IgG patient who gets twenty years, certainly a second one giving you ten years seems worth the effort.  But for me, going through six months of chemo, one month of heavy chemo, three weeks for the transplant, one hundred days without a salad, and six to eight months recovery (bald no less) to get half of twenty three

So that leaves drug therapy.  Revlimid, velcade and a host of other drugs are out there to help suppress my numbers.  And for the majority of all myeloma patients drug therapy tends to have a very low impact on their quality of life.  Unfortunately, that is not the case with me.  So, I am not looking forward to that.

Now there are some other things that pop up in my email group.  The most frequently mentioned alternative to chemicals is the herbal supplement curcumin also known as tumeric.  There are no real, documented, long term studies.  But there is tons of anecdotal evidence.  In particular there is a blog "Margaret's Corner" which deals pretty much exclusively with Margaret's battle against her disease using this herb.

I've done some reading on and off about curcumin and now I did some more.  What I finally settled on was 1800mg of curcumin with biopeperine (black pepper to help absorption) along with 1000mg of flax seed oil in the morning and again in the evening.  I called Karen my nurse practitioner and let her in on the plan.

At my May appointment, with six weeks of this regimen under my belt, there was another blood test. Karen was laughing when she called with my results.  "I don't know if it's the tumeric, but your result was 264."

2 points!!  I don't know what it was either, but I will take 2 over 41 any day.  They also did a full skeletal survey, which is a series of head to toe X-rays.  There was no new damage.  Whew!  And the pain in my upper arm is not a tumor, it's something muscular.

I called my sons and told them the results which could mean nothing or everything.  That's when this whole move to Virginia came together.  I have talked about it for a while, but I always talked about it as something that I would do....and never got to.  But Tom and Frank made their case for having me there and spending this time waiting for treatment with them.

I gave notice on my beautiful waterfront place in Hull and packed.  I went to my parents and told them all that had been happening and why I was leaving Boston.  I asked them to keep it to themselves.  I told very few people.  Its' so hard to tell people.  I feel so guilty.  It is the fastest way to wreck someone's day.  Why make everyone miserable?

But I'm better now.  I lifted the gag order.  I called my cousin Kathy.  I wanted to make sure she knew directly from me.  She found out about my original diagnosis from the internet and that wasn't fair.  I have left messages for my cousin Martine, she better return my call if she wants direct info, lol.

My next test is in a few weeks.  We'll see if my 2 points were a fluke or a pattern.  It would be nice if curcumin could slow my cancer's growth because it has no side effects.  Well as long as I remember to have something in my stomach.  Trust me, curcumin burps are hell.


Beverly J said...

Your socialist, crunchy granola, tree-hugging hippie friend is awed by your courage. And please continue to ungag yourself because those of us who care want to know. Sending you hope and healing, my friend.

Kanani said...

Mwah! Okay, Turmeric. All I can think of is Indian Curry. So I'm thinking my Boston Maggie needs to go out for chicken curry if she's not to nauseous. But then maybe I"ll eat chicken curry in your honor, followed by TWO pastries. XO K

Anonymous said...

Well, a gal's gotta do what she's gotta do! I hope you are feeling better cause if you haven't seen that fahkin' Rolling Stone cover...yer gonna be PISSED!! And I suspect you'll have something to say...