Saturday, July 27, 2013

We've Made A Move

Is it for long?  I dunno.

We've been in a temp place in Harrisonburg since the beginning of June.  And our "Find-An-Effin-House" deadline was looming August 1st.  Sara, Tom's gf finally came up with something that met every requirement but one.  My request to be near some kind of public transit.

On the other hand, it has reduced Tom's commute to an hour....if he walks.

I am moving to Craigsville.  The correctional facility where Tom is an officer is less than four miles.

I know I make lots of jokes about how there's "Nothin west-a-Worcester" but this place is the back of beyond as Mama Kelley used to say.  The town has about a thousand residents within it's 2 square miles and borders the George Washington National Forest.  Charlestown is half the size at one green mile and 16 times more people.

Sara said something last night about burying mothballs near the house to keep away snakes, but "la-la-la" I didn't hear that.

It's twenty miles from Staunton and I don't know if I can hack it.  Although, no light pollution!  The stars at night are big and bright in Craigsville as well as Texas.

So, I'll give it a shot.  I may end up with a pied-a-terre in Staunton.

But it's better than an empty FridgidAire box.

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.

All Good Things Must Come To An End.....

That's what they say, isn't it?

My cancer, which was successfully knocked out with my February, 2011 stem cell transplant, is back.

Stop!  It's bad, but not hugely bad.  I will explain.

In Multiple Myeloma a patient has an overabundance of a corrupt protein.  Mine is the IgA.  Most MMers have a corrupt IgG, but 20% have IgA.  An even more rare occurrence is a problem with the IgM, IgD and I think there are others......but they don't pertain to me and it is a Maggie-centric universe, so we move on.

The point of chemo for us it to knock the corrupt protein down and keep it down.  Some patients stop there.    The SCT (stem cell transplant) people go further.  A successful SCT can work to the point where the cancerous protein can't even be seen.  This is described as a "complete remission" or CR.  That was the case with me.  After my SCT, which has been described as being brought to deaths door and then being snatched back,  my cancer could not be seen.  I was in CR.

I was told that one general rule was that if an IgA patient makes it to the two year mark, they will make it to five.  The IgG people tend to get 10/15/20 year remissions.  For the first year or so, I decided not to think about that.  After a very unsuccessful first go around with chemo and the very bitter disappointment of failure, I decided that I would set all expectations low.  But as the twenty four month mark approached I began to get excited.  At first, I was quiet about it.  I kept it to myself.  But then I began to mention it to close friends.  I remember the smile on my face when I revealed my hopes to My Marine and he said "I know, I remember, I'm waiting too."  LOL!  Nothing gets by him.

As February, 2013 approached and my hopes grew I went to my January, 2013 appointment with Karen and Dr. Miller.  I was being tested every three months.  It was during that appointment that Dr. Miller said that they could see a protein and he wanted me to start coming in every other month.

Buuuuttttttt.......I didn't want to hear that.  Soooooo.......I didn't.

This is not the first time I have completely and successfully blocked bad news.  When my older son Tom was born, we were told he had a heart murmur and it would need to be watched.  And apparently it was remarked on during pediatrician visits for the first thirty months.  But when I was told in the early spring of 1984 that he would need an operation to fix it, I was completely blindsided.  I swore it was a shock.  Tom's father my ex was flabbergasted.

So when February 10th rolled around, I celebrated it!  I had a celebratory lunch with my parents.  I was all smiles.

Because I have mad blocking skillz!!

Then I went to the March appointment where Dr. Miller assured me that while my cancer was back and my levels were rising......we would hold off on treatment.  We would wait and see.

I nodded and smiled.......inside my head I am screaming "WTF????  What is he talking about?  I made two years!  I am going to get five.  He said he saw "A" protein, not "MY" protein!"

But after a few days, I pulled my head out of my ass and called for some numbers.  In the three months between October, 2012 and January, 2013, my cancer reappeared and my IgA level increased by 41 points.  In the two months between January, 2013 and March 2013 the IgA level again increased by 41 points.  However, these increases only brought me to 262 and normal levels are 50 to 350, so technically speaking, I was not out of remission.  But realistically speaking, at that clip, I would sail right out of remission shortly.

Ok, I am going to stop here for now.  I am tired.  When I am being honest, I will admit that my fatigue levels are indeed rising.  But I will come back for Part 2- "What I Am Doing About This".  Or some such.