The Starfish Project

The combined effort of our whole family.

Posts Tagged ‘pleural effusion

Update on Mom (5/14/09)

with 2 comments

Well, we discussed when we started this blog that we would post everything – not just the good stuff.  We wanted people to know the whole truth about how Mom was doing.

Well, we are in our deepest valley so far with this monster called cancer.  He’s trying to devour and rip my Mom apart – but, we’re trying to hold steady as a family and weather this storm.  We would definitely appreciate any prayers you feel led to pray for Mom.

Mom had her second Gamma Knife surgery last month.  That was another tough day for bad news.  We found out when they did the MRI of her brain that she had several other lesions that would need to be treated, as well as a lot of little dots.  We were shocked.  How could this be?  We were so discouraged.  Then, we had another blast of bad news when they had the CT-scan report sent over of Mom’s chest that showed that her primary lung tumor had also grown, and there were some lesions on her liver.  It was a very difficult day.

The doctors at Barrows told us that they could treat the larger lesions with the Gamma Knife, but that the Gamma Knife wasn’t designed to treat small dots.  Mom has about 30 small dots.

So, as you can imagine, we went home feeling very low – even though Mom’s Gamma Knife treatment went very well and was much, much quicker than last time.  There were only two patients getting Gamma Knife that day, so we were in and out by mid-afternoon.

When we got home, I was just puzzled how this could have happened.  How could Mom have been faithfully doing her high dose Vitamin C IV treatments, the Paw Paw supplement, and the low-dose Naltrexone – and nothing had worked to stop the metastases.  In fact, it was like a flood gate had been opened.  Mom had had consistently good reports about her lung tumor getting smaller, as well as the original brain tumor getting smaller too.  So, what caused this setback?  What made things change for her?

After I figured it out, it all made sense to me.  Both the high dose Vitamin C IVs and the Paw Paw supplement are antioxidants.  I discovered that high doses of steriods can diminish the effectiveness of antioxidant treatments.  So, all this time Mom was faithfully doing these antioxidant treatments — the nasty high dosages of Decadron (the demon drug, as we call it in our family) was working behind the scenes making her alternative treatments ineffective.

SO, IF YOU ARE TAKING DECADRON FOR BRAIN METS OR FOR A PRIMARY BRAIN TUMOR — UNDERSTAND THAT ANTIOXIDANT ALTERNATIVE TREATMENTS MAY NOT BE AS EFFECTIVE!!!!

I wish we had learned this sooner, as we would definitely have put Mom on some other types of treatments that weren’t antioxidants – but worked in some other way to fight cancer.

Once we figured this out, Mom started on her Poly-MVA treatment.  In fact, her first shipment of it was waiting for us when we got home from the Gamma Knife treatment.  We were encouraged with that because Poly-MVA seems to work best on brain tumors, lung tumors and one other type (which I can’t remember off the top of my head right now).  So, we weren’t too worried about the little dots.  We felt confident that the Poly-MVA would take care of the dots.

Also, over the course of the last month, Mom developed a pleural effusion – where fluid builds up in the pleural space (around the lung) and caused her a lot of pain and discomfort.  We took her to a pulmonary doctor last Wednesday to make arrangments to have it drained.  His office set her up for an appointment for the procedure for Monday the 11th at the local hospital.

Well, Mom was in so much pain that we took her to the ER so they could drain it.  Little did we know they were going to admit her and keep her for six days.  The next day they did the first drain and were able to pull off 2 liters of fluid from the pleural space.  The next day they pulled off another 750 ml of fluid.  Mom was feeling a lot better.  However, at the hospital, they kept giving Mom pain meds.  First it was Morphine for the pain from the effusion, then it was Dilaudid.  She was pretty doped up, but recovering nicely.

Then, two days ago, she took a downward turn.  Sometime during the night they discovered that she had developed another blood clot in her upper arm.  They moved her IV site to her foot – which meant she could no longer get out of bed to use the restroom.  And, they catheterized her.

From this point, she was very weak and looking like she was going to need some time to get back on her feet again.  It was at this point her internal medicine doctor suggested that we look into hospice.  Of course, we have not given up on Mom.  The doctors all have and they are quite depressing.  These doctors should have a class in how to talk to people.  Some of them are quite abrasive when discussing such sensitive matters.

The social worker for the hospital came in and discussed what hospice was.  She told us that just because someone is working with hospice doesn’t mean that we’ve given up hope.  It just means that the family will get some help  at home and Mom can be made comfortable at home.

Well, we’ve come to find out what that really means is that Mom will be completely doped up into a stuper at home and the hospice people (while very nice) all believe that she’s going to die.  So, tonight, Dad decided to stop with all the crazy drugs the hospice people gave her.  She’s not even in pain.  The only pain she had was from the pleural effusion – and that’s healing up just fine now that it’s been drained.

We’re going to talk about quitting the hospice care tomorrow as a family.  Mom still has a lot of fight left in her and when she’s on the Morphine she just really doesn’t give a crap about anything.  So, that’s not a good drug to take if you’re trying to fight still.  Today she didn’t eat and barely drank.  She was refusing the Poly-MVA in the afternoon and evening.  That’s no good.  So, she’s not going to take them anymore.

So, as you can imagine, it’s been a very emotional couple of days for our family.  However, I talked to Mom on the phone tonight and she sounded better than she did yesterday or even earlier today.  She sounded coherent – even though her voice is still just a whisper from the laryngitis.

Mom had been off of her Poly-MVA while she was in the hospital.  So, now she’s back on that again.  We’re hoping to see her appetite improve and her energy come up once she’s been on it consistently for a week or two.

I was listening to music tonight and the Keith Green song “Your Love Broke Through” came on.  I just broke down crying.  The words to that song are so perfect for where Mom was right then — at that exact moment when the song came on:

“Like waking up from the longest dream, how real it seemed
Until your love broke through
I’ve been lost in a fantasy, that blinded me
Until your love broke through.”

It’s a song about God and how His love can break through our times of absolute hell.  He finds us in the midst of our nightmares and His love is so powerful it breaks through and brings us back to Him.  At least, that’s what this song meant for me tonight when I heard it.  Mom’s been living in a drug-induced, blinding fantasy for a few days and these people had us convinced she’s dying soon.  Well, that’s not true.  It’s just an illusion – a fantasy.  I’m sure they don’t mean any harm.  But, they are very, very wrong.

Like my sister and I always say about the naysayers who doubt natural healing or spiritual intervention:  “We’ll add them to Mom’s Christmas card list.”  🙂

As you can imagine, our family covets your prayers and good thoughts for Mom.  While this is a very tough time, I feel we’ve got some resolve and peace of mind that this is not the end for her.  She has a lot of living yet to do and we still need her to be here with us.

I’ll post when I can…

Tracey

Written by Tracey

May 14, 2009 at 1:42 am