The Starfish Project

The combined effort of our whole family.

Archive for May 2009

Update on Mom (5/23/09)

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Today was both a difficult day and a beautiful day.  Mom left this world at 1:25 PM today.  She was home in her own bed.  She wasn’t in any pain or on any pain medication either.  She was surrounded by her family. 

She made the decision on Thursday that she was done with her fight and she wanted us to call Hospice of the Valley on her behalf.  The Nattokinase worked at the beginning, but it was no longer working.  Her body was beginning to shut down.

We spent Thursday evening saying goodbye to her.  She talked privately to each one of us – including the grandkids – and we talked about everything that was left to be said.  We told her of our great love and admiration for her and the way she chose to fight this terrible disease.

The hospice nurse came out to the house around 10:00 PM Thursday night and we got Mom comfortable in bed.  She took small doses of Morphine on Thursday night a few times, but didn’t want any more until later on Friday.

On Friday, we spent more time with her as she would wake up periodically between Morphine doses.  We were blessed that our brother, Keith Jr., was able to fly in last night to spend some time with Mom too.

She took her last dose of Morphine at 9:00 PM Friday night.  When it came time to give her more, she didn’t want it.  She told us she wasn’t in any more pain and that she was comfortable.

We took turns sitting with her throughout the night andmorning on Saturday (today).  She woke up many times during that time and we were able to visit with her and comfort her while she was going through this process.

Dad and I were with her this afternoon when she took her last breath.  She was peaceful and we felt the Lord’s peace resting on her as she made the transition to eternal life.  She was an example tous all in the way she chose to live her life and how she chose to treat this disease.  She will be missed very much and there will forever be a hole in our lives because of her absence.

Thank you so everyone who has been praying for herand encouraging her in her journey.  It was not the ending we were hoping and praying for.  She was concerned at the end that people would be discouraged from using naturopathic medicine to treat cancer because it had not healed her.  However, every situation is different and we know that the Decadron steroids were undermining all her naturopathic treatments.  Had we known that, we would have done things differently.  So, if you are reading this and you are taking Decadron steroids for brain metastases, you will have more information than we did and can make different choices.

In spite of our loss, we still believe in the power of naturopathic medicine and its ability to restore a person to health from cancer.  Mom did not have any of the terrible side effects that she would have had from conventional medicine.  She looked healthy adn vital when she passed.  She enjoyed many healthy months with her family and I’m sure she did not regret any of her decisions.

I will update with more information as I go through the grieving process for my Mom.  There is still more work to do to bring more complete information about naturopathic medicine to treat cancer and just because Mom is gone I don’t think I’m supposed to stop updating the blog with information.

So, until next time…

Tracey

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Written by Tracey

May 23, 2009 at 4:00 pm

Posted in Updates on Mom

Update on Mom (5/19/09)

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Last Friday, Mom’s hand started hurting quite a bit and three of her fingers started getting purple.  After the incident with her thumb, we knew what that meant.  So, Dad and Gretchen loaded Mom up and took her back to the ER.  They saw the same ER doctor we saw last time (which was helpful, as he was already familiar with Mom).  He couldn’t find a clot with the doplar, but felt they were probably small clots that were down in the capillaries of her fingers.  He wrote them a prescription for some nitro glycerine ointment which had to be applied to her hand every few hours and wrapped up.  This ointment is such a strong vasodialater that the person applying it had to wear gloves and be careful not to let their skin come into contact with it.  He said to use this through the weekend and if it didn’t help by Monday, to get Mom in to see a hand doctor.

Dad faithfully applied the ointment all weekend and Mom’s hand was still hurting quite a bit – so much that she needed to take pain pills to take the edge off the pain.  From what I’ve read, the pain from circulation problems caused by blood clots is quite terrible.  Mom and Dad had a pretty rough weekend with it with very little sleep.

On Monday morning, Gretchen started bombarding the primary care doctor’s office with requests for a referral to a hand specialist ASAP.  They were right on the ball and Mom had an appointment for 11:00 AM this morning.

I am still recovering from the flu (the normal one), so I still haven’t seen Mom since the morning of the 15th.  So, Dad and Gretchen took Mom over to the hand doctor this morning.  He did an x-ray and found that the clot was further up her arm, near her armpit.  The doctor was respectful, but still didn’t have any good news either.  He looked at Mom’s three fingers (which were now purple) and said that she would lose them, as well as the index finger and the rest of her hand.  He said all we could do was make her comfortable until all this happened and he could amputate her right hand.  He gave her a prescription for Darvocette and sent her on her way.

Well, this was definitely not the kind of news we wanted to hear.  But, we’ve learned that allopathic doctors generally don’t have good news for us (except for a few who we’ve appreciated so much).

Gretchen called me when they got home from the doctor and she was pretty shook up.  I imagine all three of them were – especially Mom.  I was also pretty shook up too.  I asked Gretchen how long she was going to be at Mom and Dad’s house and she said she was going to be there for a few more hours.

I got on the internet and started looking for anything that looked like it might work.  After only about 30 minutes of searching, I was amazed to find information about a supplement called Nattokinase.  It is an enzyme that aids in breaking up fibrin (a strand-like portion of the blood) that forms blockages in veins.  The Nattokinase is derived from fermented soybeans and has long been used in Japan to deal with and/or prevent blood clots.  It comes in a standardized formula which Gretchen was able to purchase at the health food store for around $30 (but available MUCH cheaper online through VitaCost for less than $7).  But, we needed it today, so Gretchen paid the $30 for it today.

She also picked up some stuff to make a blood thinning soup — it consisted of an organic beef broth base, onions, garlic, and green cabbage.  All of these veggies are good for naturally thinning the blood in both the arteries and the veins.

So, at 4:00 PM tonight, Mom was hurting, a bit scared, but encouraged that we had possibly found a solution that would save her hand.  She took her first 2,000 FU Nattokinase pill.  Gretchen also made the soup and Mom scarfed down a good portion of that too.  And, then we waited…

Gretchen came home (where I was babysitting her kids) at around 9:30 PM, and she said that you could already see a difference in Mom’s fingers.  She said that all day today the three fingers had a very delineated purple line straight across where the circulation was being compromised.  But, only 5 1/2 hours after taking the Nattokinase, the lines were no longer straight and it was now blotchy (with areas of pink) where they had once been only purple.

Gretchen called back at Midnight to remind Dad to give Mom her next dose of the Nattokinase and he said he had just given it to her.  But, then came THE BEST NEWS —- Mom’s hand no longer hurt.  She was sleeping and in absolutely no pain!!!  She hadn’t taken a pain pill since the morning and her hand was no longer hurting.  It had been hurting terribly since last week – but, the pain is now gone.  Gretchen asked if it was still purple, but he said they were in bed and the light was off and he didn’t know.  But, since the pain was gone, that can only mean that the circulation has been restored to her fingers and hand.  Isn’t that just awesome?

The thing that we have come to realize in this journey with cancer is that we, as a family, are alone.  We can’t count on my Mom’s doctors to know what to do anymore because they just simply don’t know what to do anymore.  Perhaps the insurance company doesn’t want to pay for any more treatment for her because they’ve now classified her as “terminal.”  Who knows.  But, perhaps it’s the best thing that could have happened to us.  Because, we’re finding that there are answers out there for many of the things that conventional medicine says are hopeless.

Mom has been taking her Poly-MVA now consistently for a few days and her appetite is returning.  Tonight is the first time in several weeks that she hasn’t had some kind of pain or another.  We’re praising God about that.  He’s been with our family through all of this and showing us that His ways are higher than our ways — His thoughts are higher than our thoughts.

Well, it’s very late and I need to get to bed.  Thank you to everyone (both those we know and those we don’t) who’ve whispered a prayer to heaven on Mom’s behalf.  We know we’re not really alone.  But, sometimes it feels like it.

Until next time (I’ll try to update tomorrow on the status of Mom’s fingers and hand) …

Tracey

Update on Mom #2 (5/14/09)

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I just got home from Mom and Dad’s house.  My sister, Gretchen, called this morning and said that Dad called her and wanted to have a family meeting this morning.  She said Mom was lucid and sitting on the couch with Dad.  So, Gretchen picked me up and we went over there.

I have a terrible chest cold, so Dad gave me a mask to wear while I was over there.  I really don’t want to give Mom any kind of a respiratory infection.  But, we felt that the need to have a family meeting and discuss everything that was going on was paramount.   So, I wore the mask and tried not to touch anything while I was there.

Mom looked good.  I guess she “woke up” earlier this morning.  She doesn’t remember anything about yesterday.  She doesn’t remember signing a DNR with the hospice nurse.  We didn’t even know she had signed that until the hospice nurse came out of the bedroom holding a signed DNR with Mom’s signature on it.  Well, Mom does not want a DNR and didn’t even know she had signed it.  They had given her a massive dose of liquid morphine before she signed it.  I hardly think a person is capable of making such a decision when so heavily medicated.

Anyway, we explained to her that her body isn’t dying.  She’s just sore from the draining of the pleural effusion and her arm is a little sore where the blood clot is.  But, other than that, she’s not in any pain — certainly not end-of-life pain.

We talked to her about what she wanted to do.  She said she wants to keep fighting and she doesn’t want to be doped up anymore.  So, we were very glad to hear that.  She looked good and was communicating very well with us.  She was nibbling on some ice chips and drinking some water.  It was nice to see her hydrating herself again.  She didn’t have anything to eat or drink yesterday because of the narcotics.

So, we press forward together as a family.  Dad looked absolutely exhausted.  It was a very rough night for him.  He didn’t sleep a wink.  He spent most of the night praying for Mom (as we all did) and keeping a close watch on her like a mother hen.  He is the strongest person I know and I’m so grateful for him.  If it weren’t for him, I think our family would have fallen apart through all of this by now.  He’s definitely the rock for our family.

So, it was a good morning for us.  Gretchen is going to call hospice and talk to them about what we really need.  Mom needs some mild pain management – like prescription Motrin – to manage her arm pain and the pain she’s experiencing from her left lung re-inflating.  It’s sore from that, as well as from all the coughing.  So, we’d like to help her manage that without narcotics.  We’ll see if hospice will honor our boundaries and Mom’s decision to keep fighting.  She’s weak and her fight isn’t very strong – but, she’s fighting nonetheless.  And, for that we’re very, very grateful.

So, like the scripture says … Joy comes in the morning.  While yesterday and last night were very, very dark, this morning is much brighter.  Thank you all so much for your prayers and good thoughts.  We’ve had over 14,000 visitors to the blog and we know there are people all over the world praying for Mom, as well as searching for answers for themselves or their loved ones.  Keep fighting the good fight of faith.  Only the Lord knows the end of the story for each one of us.

I’ll keep you posted on Mom’s progress.

Tracey

Written by Tracey

May 14, 2009 at 10:46 am

Update on Mom (5/14/09)

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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