The Starfish Project

The combined effort of our whole family.

Posts Tagged ‘Gamma Knife

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.


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…


Written by Tracey

May 14, 2009 at 1:42 am

Update on Mom (4/24/09)

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Well, it’s been a little bit of a rough week for us.  Mom had a follow-up appointment with Dr. Randall Porter, her neurosurgeon, on Monday morning.  The news wasn’t what we were hoping for.  The MRI she had last week has revealed three new lesions on her brain.  The good news is that the large lesion (and the two spots) that were treated in February with Gamma Knife are gone.  So, that’s really great news.  But, the fact that there are new ones is disappointing.

Mom is scheduled for another Gamma Knife treatment next Tuesday (4/28/09) at Barrow Neurological Institute’s Gamma Knife Center.  We believe this treatment will be much easier for Mom for a couple of reasons:

 (1) Her back is much better now and she is able to sit up without pain.  When she had the Gamma Knife treatment back in February she wasn’t able to sit up the whole time and she had to rest her head on the back of the halo (which hurt and caused the back screws to hurt quite a bit);

(2) She was a last-minute addition to the Gamma Knife schedule last time and we were there from 5:00 AM until after 6:00 PM.  They were wonderful to get her added to the Gamma Knife schedule that day and we’re very grateful for it.  But, this time, she’s not a last-minute addition, so we should get out of there quite a bit faster; and, finally,

(3) She’s not going to be admitted to St. Joseph’s Hospital after the procedure (like last time), so we should be home for dinner.  It’s an out-patient procedure and we’re really believing she’s going to have the best possible experience there this time.

Please keep Mom in your prayers as she goes back for another round of Gamma Knife next Tuesday.

On Monday morning, we’re heading over to the local hospital here in Mesa for her to have a chest CT scan to see how her lungs are doing.  We’re believing for good news on that front.  I’ll post when we know anything.

Today I filled out all the paperwork for Mom to be admitted to a study for the Poly-MVA.  There is information here on the blog (it has its own category) if you’re interested in more info on it.  Hopefully, we’ll hear something back pretty soon from them so she can get started on that right away.  The information we’ve read so far is very encouraging when Poly-MVA has been used on cancer patients.

The thing we’re hoping for most is that Mom will get some more energy once she starts taking it.  She’s been feeling pretty drained and it’s difficult to recover when you’re tired all the time.

I’m taking both Mom and Dad to their primary care physician tomorrow for an initial consultation with their new doctor.  We’ve seen one of the other doctors there in the office a couple of times, but we haven’t actually met their official primary care physician yet.  So, we’re looking forward to that.

Mom’s thumb is still pretty jacked up.  She end is still black, but it’s not weepy or weird.  Her Naturopathic Doctor thinks it’s doing well.  We’ll be setting up an appointment for her to see a hand specialist very soon so we can get it checked out.

Well, I think that’s about it for the moment.  As always, we appreciate all your prayers and kind thoughts for Mom.  It’s difficult for her to talk on the phone right now because she’s having some problems with laryngitis – which we’re getting checked out by an ear, nose, and throat specialist ASAP.  So, email works well for her.  We can print them out and read them to her.

I’ll post more info when I have any new info.

Until next time …


Written by Tracey

April 24, 2009 at 1:17 am

Mom’s Gamma Knife Procedure

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Hi Everyone,

Sorry I didn’t update last night when I got home, but with all the crazy stuff going on lately – I forgot to pay my internet bill and I came home to find I had no internet connection.  Yikes!!  So, I figured I would just update it today when I came back to the hospital and leave the internet bill with my wonderful husband, Marc, to sort out.

We are so happy to tell you all that Mom did have her Gamma Knife procedure yesterday and it went well.  I took some photos to help document the story of her day.

5:00 AM – We had to get Mom to St. Joseph’s for admitting at the crack of dawn.  All of the Barrow Neurological Institute patients are first admitted to St. Josephs before they are transferred over to the Gamma Knife Center.

6:00 AM – We then had to go up to the second floor to the pre-op area where they put us in a little waiting area. 

Pre-Op Area

Pre-Op Area

They asked Mom to change up into the hospital gown and get onto the gurney.

Well, that was easier said than done.  With all the pain in Mom’s back, it was just too much to ask her to try to stand up and move onto the gurney.  So, several very, very compassionate nurses went and got the sling maching and helped Mom get into the sling and then they were able to put her into the bed that way with very little pain.

While they were moving her they saw the condition of her arms and knew they were going to need their “master” blood person to put in her IV.  So, they brought in the specialist, Mary, to get her IV set up.

She had one of the nurses put a warm blanket on Mom’s arm about five minutes before she came over.  When she got there and took a look at Mom’s arm, she seemed confident she could find a good place to set the IV.  She was amazing and got it going on the first try.  She set her up with a very slow saline drip and got her ready to go to the Gamma Knife Center.

9:00 AM – After a few hours in the Pre-Op area, they finally came to get us and take us to the Gamma Knife Center.  This hospital complex is HUGE and is like a small city.  We were wound through various hallways and taken on elevators and walked FOREVER until we finally came to the Gamma Knife Center.  Yeah!!  All that work we have been doing for the past seven or eight weeks was finally going to make it happen.  We were all so excited.

Mom was a last-minute addition to the schedule, so they didn’t initially have a place for us.  So, we were parked in the hallway for about an hour.  During that time, Dr. Brachman came by to see her.  He is the radiation oncologist who’s on her Gamma Knife team.  He explained to her that at no time during the procedure should she experience any pain or any discomfort.  If she did, she needed to let them know so they could take care of it.  He was very nice.

Then we met Mom’s anesthesiologist.  She took a look at Mom’s chart and let her know that she would be putting a sedative into her IV during the placement of the head frame.  She would be asleep for that procedure and would wake up with the frame in place.

The Gamma Knife treatment is done in four steps:

  1. Fitting the frame onto the head.
  2. Getting an MRI of the head with the frame attached.
  3. The doctors will plan her treatment based on the results of the MRI.
  4. The actual Gamme Knife treatment.

10:00 AM –  Sometime during this hour Mom was given her designated room at the Gamma Knife Center.  This would be our home for the day.  We were introduced to her nurse for the day, Mary, who ended up being one of the nicest nurses Mom has ever had.  They told us we could stay in the room until we saw the whites of Dr. Porter’s eyes.  He would be coming to attach the frame and we couldn’t stay for that part.  I don’t think we would have wanted to anyway.  It’s a little on the freaky side.

So, Mom was all ready for Step 1:  Fitting the Frame Onto the Head.

11:00 AM – Dr. Porter arrived and greeted us and we left Mom’s room and went up to the family waiting area at the front of the building.  There were chairs and a TV up there and we watched “The Price is Right” with the other families and visited with them.  There were a total of four patients there for Gamme Knife treatment.  The nurse said the most they’ve ever had was five in a single day.

Gamme Knife Frame

Gamma Knife Frame

It just took a little while for them to fit the frame onto her head and we got to go back and see her again. 

She was resting comfortably when we got back there. 

The frame was attached and we were so excited to have one more step completed in Mom’s Gamma Knife treatment.

At first, we were a little concerned that she might have some bleeding because of her low blood platelets, but we knew Dr. Porter wouldn’t have done the procedure if she were in any danger.

She slept when we first got back into the room because she was still slightly sedated.

But, after a little while she woke up and talked to us.  She says she has no memory of them attaching the frame.

When I spoke with one of the nurses, she told me that most of the Gamma Knife facilities do not use any anesthesia when applying the head frame – they just use a local numbing cream.  We were sure glad that Mom was in a facility that does utilize some anesthesia.  I think the mental memory of that could be weird if remembered.

Gamma Knife Frame

Gamma Knife Frame

Once Mom had the frame on, we were now just waiting for her to get her MRI.

I took a few pictures of her in her head frame.  It was very interesting to see how the whole process worked.

There were two screws in the front (just above her eyebrows) and two screws in the back.  We haven’t seen those yet, so we don’t know if they shaved her hair a little bit or not.

The frame is made of aluminum so it’s lightweight for the patient (since it has to be worn for quite a while).

The weight of the frame is 2 pounds.  There are a series of pieces fixed together with bolts so it can be customized for the size of each patient’s head.

Mom's Cute Face!

Mom's Cute Face!

I decided that the whole design of the thing had to be made by a man.  A woman (especially a Mom) would have designed it much differently.

First, a Mom would have considered how the patient would manage eating while wearing this thing.  A Mom would have made a hinge on the front piece so it could swing away from the mouth for eating.  lol

Mom was such a brave trooper.  She handled each thing that took place with courage and faith.

We just knew that if we could get her here, that would be the resolution to her brain tumor issue.  So, while everyone was so apologetic for various things – like putting us in the hallway, or for making us wait – we were very happy and grateful just to be there at all!  It was a long uphill battle, it seems, to get to this point and there wasn’t anything that was going to take away from that.

Another great thing that happened was that when Dr. Porter saw Mom when he was attaching the frame, he could see how much pain her back was in.  He decided at that point to keep her after the Gamma Knife procedure and take care of her back and get her out of pain.

Mary told us that she was trying to find Mom a room at the hospital so she could be re-admitted back into the hospital after the Gamma Knife treatment and have back surgery on Thursday.  I think we were all a little scared about that at first.  Not that we didn’t think she needed it, but we just didn’t know what it involved and we were concerned about her having back surgery in such a weakened condition.  Mary didn’t know the details about it at this point, so we were just hanging our trust on Dr. Porter because we all trust him very much to take good care of Mom.

11:20 AM – Step 2 – MRI:  Mary came in and told us that it was time for Mom’s MRI.  They said it would take about 40 minutes to complete.  So, Dad and I decided we would go get some lunch at this time.  Her wonderful nurse, Mary, told us that we could bring Mom something to eat and drink.  Mom asked for some herb tea and Mary told us that it was fine.  So, Mom was in heaven that she could have some herb tea (after her two week restriction from any water, tea or coffee).  So, Dad and I headed to the cafeteria for lunch.

Waiting for Gamma Knife

Waiting for Gamma Knife

NoonStep 3 – Dr’s Planning Treatment:  When we returned from lunch, Mom wasn’t back yet from her MRI. 

She came back shortly after we arrived and was thrilled to see that we brought her herb tea, french onion soup, and a fresh fruit bowl. 

She gobbled up the soup and fruit and enjoyed sipping her tea through a straw. 

I forgot to mention that because of the anesthesia and sedatives for the frame attachment and the MRI, she wasn’t allowed to have anything to eat or drink since midnight the night before.  So, she was very parched by this point (actually, she was really thirsty since the morning).

She was in and out for the next several hours.  She complained about being a little bit claustrophobic because of the frame being right in front of her eyes and Mary brought her a Valium to calm her down.  We wanted to nip it in the bud so she wouldn’t start panicking and raise her blood pressure or anything.

Within a few minutes of taking the Valium, Mom was calmed down again and sleeping.  Once she ate, she mostly just slept during the next few hours.

At around 4:00 PM, she complained of a bad headache.  I told the nurses and they said she was just about ready for Gamma Knife.  They said she would probably be done before any pain med would start to work for it.

4:15 PM – Step 4 – Gamma Knife Treatment:  Dr. Porter came back and told us that the MRI wasn’t any different than it had been two weeks ago.  She still had a 1.13 cm lesion on her brain.  He told us they found two very tiny dots on her brain that they weren’t sure about.  He said they could be nothing, but just to be on the safe side he wanted to treat them.  We were all in agreement with that.  We were so thrilled to see that the tumor hadn’t grown in the two weeks that Mom’s been off her alternative medicine regimen.

He also told us more about the back surgery.  He said it’s really not a very invasive surgery at all.  It’s called something like vertibroplasty and they put cement in her spine to relieve the pain from the compression fractures he found on the CT scan of her spine.  I guess it fills in the spaces of her vertebrae and takes the pressure off the nerves (or someting like that).  Anyway, he said she should feel relief within a few days.  He said there’s virtually no recovery time and she’ll feel better very soon.

So, that’s so nice.  I was anticipating having to call her primary care physician and get a referral for a back specialists.  That could have taken weeks.  Then we would have had to take her to that appointment, then for imaging, then back for some type of consult.  And, then, finally — a month or two later — she would have gotten some back relief.

Dr. Porter rocks!  He’s awesome and we’re so grateful for his care of Mom.

Mary talking to Mom

Mary talking to Mom

Okay, now back to the Gamma Knife treatment …

Once we knew what the plan was, it was time for her to go.  They let us in the Gamma Knife room while they were preparing her for her treatment.

They moved from her gurney to the Gamma Knife table and adjusted the table to make her comfortable.

During this time Dr. Brachman spoke to Dad and me and explained that the whole procedure would only take 30 minutes for Mom – 40 minutes at the most.

We were just thrilled that this time had finally come.  She was actually in the Gamma Knife room and it was really going to happen!  We were elated.

Here are a couple more pictures of her in the Gamma Knife room once her frame was attached to the machine. 


Mom w/Gamma Knife machine

This will  keep her head from moving at all during the procedure so they don’t accidentally zap any healthy brain tissue. 

So, while it’s sort of strange and uncomfortable for her, we are grateful for the accuracy of the entire process and how targeted the gamma rays will be on her brain.

The machine looks a bit like an MRI, except that Dr. Brachman said it would be very quiet (which is very different from an MRI machine).

You’ll notice the label on the upper part of the machine that says “Gamma Knife Perfexion”.  I blew the picture of that up and that’s the first picture at the top of this blog post.

There was a whole team of people on computers who were going to be part of Mom’s team.

The whole experience was really neat.  Since Mom doesn’t remember much of it, this will document it for her too.

So, we said good-bye to Mom and good riddance to her brain tumor and off we went to Starbucks to get a latte during her procedure.

We called my sister, Gretchen, while we were on our Starbucks run and let her know that Mom was in the Gamma Knife machine.  We all rejoiced that it was finally happening for her.

5:00 PM – When we came back from Starbucks, Mom was already done with her treatment and her head frame was already removed.  Yeah!!!  When we saw her, she was looking great and feeling good too!

Mom resting after Gamma Knife

Mom resting after Gamma Knife

Mary told us that St. Joseph’s had found a room for Mom, so we were going to be going back to the Pre-Op area we started the morning in and wait for her room to be cleaned and readied for her.

Her nurses back in Pre-Op were wonderful and took her vital signs and even ordered a tray of food to be sent to her room so she would have dinner when she got there.

Mom was then wheeled back up to the 6th floor and into her new room.

It was a familiar site to us (as it is almost exactly like the room she had last week) and is only 2 rooms away from that one.   lol

7:10 PM – We made it up to Mom’s room at St. Joseph’s.  We met her nurses, Alicia, who was going off-shift in about 20 minutes.  She got Mom all settled in and introduced us to her night nurse, Susanne.  Susanne was wonderful and took great care of Mom during the night.

I went home about 11:00 PM and Dad stayed the night last night.  Mom had a wonderful day today.  Alicia was back on shift today and she took excellent care of Mom all day.  I came back this afternoon around 3:00 PM to relieve Dad so he could get home and get some sleep.

Mom is scheduled for vertibroplasty at 7:30 AM tomorrow morning.  So, once again, we’d like to ask for your prayers and happy, positive thoughts for Mom for tomorrow.

Thank you all so much for being there for Mom.  This has been an amazing journey with this whole Gamma Knife deal and we’re so thankful that it all went perfectly and she’s on her way to being pain-free after her back surgery tomorrow!

I’ll post more tomorrow night and let you know how that goes …

Until then,


Mom is Home!

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Well, we were finally able to get Mom home last night with the use of a mobile transport.  Two very cute paramedics brought Mom home on a gurney.  She chatted them up all the way home and they both wanted one of her business cards with info about this blog for people they know who have cancer.

I’m not going to lie and say that it’s easy right now because it’s not.  Mom is pretty much immovable and we’re having to do just about everything for her.  She’s in a lot of pain in her lower back, which is discouraging her from trying to do much.

At this point, we don’t really know what’s causing this pain and until we find out for sure – we don’t really want to push her too hard.  But, once we get the “all clear” from her doctors about movement – we’ll start getting her up out of the bed and moving again.

At this point, we’re just trying to get from Point A (home) to Point B (Gamma Knife surgery on Tuesday).  Once she has the surgery, we feel that we’ll start seeing a much bigger turnaround in her recovery.

She’s pretty tired from being in the hospital for so long, so these next few days are just going to be a chance for her to rest and catch her breath.

I probably won’t update the blog again until we get back from Gamma Knife on Tuesday evening.  I’m not sure if she’s going to come home with us after Gamma Knife, or if she’s going to go into a rehab.  That’s something we need to discuss with her doctor.

Thank you everyone for your prayers – not only for Mom, but for me and Dad too.  This is definitely one of Mom’s “valley” experiences, as we call it, and something that will be one of our darker memories during her road to recovery.

Until Tuesday night …


Written by Tracey

February 1, 2009 at 12:07 pm

Weesa Goin’ Home (1/30/09)

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Mom is doing well today.  Several doctors came by and looked at her thumb and they all agreed that it looked better to them.  Still, we need prayer because we’re not out of the woods on this yet.

Everything is looking pretty good for Mom except her platelets are still a bit low.  No one is really sure why.  They’ve cut back on her meds and we’ve stopped giving her any of her “at home” alternative meds and we’re just waiting to see what happens with that.

However, they feel comfortable discharging Mom tomorrow and have scheduled her Gamma Knife surgery for next Tuesday.  So, while we’ve waited a very long time for this, we’re very excited to finally have it happen next Tuesday.  Better late than never, huh?

One of Mom’s fantastic nurses, Sarah, brought in a water-heated pad to keep under Mom’s arm and hand to keep her thumb warm.  It’s working great and so much better than just changing out warm blankets every hour or so.  This works all the time to keep her thumb warm all day long.  I’m not sure why no one thought of it before Sarah came on shift.  But, we’re grateful to her for bringing it in and letting Mom use it.  It’s helped a lot.

[Note to Judie:  Mom’s vascular surgeon didn’t come in today, so I couldn’t ask about the hot/cold treatments.  I’ve used it in other things when I’ve needed to move the blood along, but I’m not sure it would work in this instance.  They don’t want her thumb to get cold ever.  Even when she showered today they didnt’ even want cold water to touch it.  But, I will ask him when we see him next about the alternativing hot/cold treatment.  Thank you so much for the suggestion.  I hope you’re doing well and your hand is healing up nicely.]

Mom’s main doctor said he thought it would be okay to bring her home tomorrow and let her recover a bit more at home until her Gamma Knife surgery on Tuesday.  We are all very excited to have her back home again.

Her neurosurgeon has also lowered her Decadron dosage to 4 mg every 8 hours (it was at 4 mg every 6 hours).  This will continue to be lowered until she’s off of it completely in 5 weeks.  We are most thrilled about that.  I’m convinced that Decadron is the most insidious drug I’ve ever seen.  It’s probably really great for short-term usage, but being on it this long (which was caused by her primary care doctor’s delay with getting the referral cleared with the insurance company) has devaastating effects on a person and on their family.  If you’re out there and you’re reading this and considering taking Decadron, please make sure to move quickly to resolve your brain issue so you can start to wean off of it quickly.  You definitely don’t want to be on this stuff long-term.  I’ve heard it referred to by spouses and children of patients taking it as “The Boss Pill,” the “Insidious Drug,” and “THE DRUG.”

Mom’s wonderful physical therapist, Al, came in and saw Mom today and recommended some equipment we can get for the house that will make it easier for us to care for Mom during her recovery.  He was really encouraging and said he’s seen this type of steroid-induced myopathy before and that Mom should have significant improvement in 3 or 4 weeks and could be fully recovered in 6 weeks.  So, that was very exciting to hear.

Mom is very weak right now, so I know it probably seems impossible to her that she could be up and around again in just a few short weeks.  But, hospital stays definitely take their toll on the physical body and we often feel worse just being here than we do once we get home and start to recover.  This will be an 11-day hospital stay for her and that has certainly taken its toll on her.  However, I think Mom is going to make a wonderful recover and I believe her thumb is going to completely heal, as well.

Mom is an anomaly here.  Everyone who cares for her asks her questions about her treatment.  They can’t believe she’s never done any conventional cancer treatment.  Many of them have loved ones who have cancer, so they’ve been extremely interested in getting information from Mom about what she’s doing and who her Naturopathic Medical Doctor is.  If you’re in the Phoenix area, Dr. Jason Porter is Mom’s doctor and you can see his website at:  He’s fantastic and even called me back last Sunday when I had a question about Mom.  If you’re looking for a good Naturopathic doctor to treat cancer and you’re out of state (and not in a state with good Naturopaths or any) he would be a great choice.  We have nothing but wonderful things to say about him and the treatment he’s given Mom.

So, as it stands right now, we’re looking at busting Mom out of here sometime tomorrow.  If that happens, I’ll post tomorrow night once we have her home and situated.

We’re so excited to have her home for Superbowl Sunday so we can watch the big game (Go Cardinals) at her house instead of in the hospital!!

Thank you all so much for leaving her comments on the blog.  She has really enjoyed me reading them to her here in the hospital.  I have my laptop here and the hospital has wireless – so I’ve been able to keep up with the blog while I’m here.

I think that’s all the pertinent stuff.  Until tomorrow…


Written by Tracey

January 31, 2009 at 12:05 am

Update on Mom’s Thumb

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I just spoke with Dad and he said the vascular surgery was a success.  The color has returned to her thumb (except for the very tip), but the doctor thinks that will heal up too.  They found one large blood clot and several smaller ones and removed them.  Her hand is a little swollen, but she’s doing so much better.  Dad said she’s resting comfortably and they’ve been giving her a little bit of morphine for the pain.

Man, we just never saw this one coming.  We noticed that her thumb was a little discolored yesterday and mentioned it to the nurse.  But, her nurse said it was just from poking her fingers to check her blood sugar.  The Decadron makes your blood sugar go up and she’s had to receive insulin a few times.  Her blood sugar was 240 on Monday night and they gave her six units of insulin.  And, it was 146 yesterday afternoon and they gave her 2 units of insulin.

But, when we thought about it, they never poked her thumb to take her blood sugar.  I’m just glad they were able to do the surgery right away and save her thumb.

Okay, I’m getting in the shower and getting ready to go back to the hospital and relieve Dad.  Our plan is for her to have a wonderful and restful nights sleep so she’ll be ready for the Gamma Knife surgery in the morning.  She’s on the schedule for 7:00 AM.  It takes a while because there are many different steps they have to complete for the procedure.  They have to bolt the frame onto her skull.  She will have four screws that go into her skull.  They say this doesn’t hurt – it just feels like pressure when they’re doing it.  Then she has to have an MRI done of her brain while the frame is attached to her head.  Then the doctors will look at the MRI and make a plan for the actual Gamma Knife procedure.  They have to have a scientists on the team who will determine the angles of the gamma rays.  Then, she will be put into the Gamma Knife machine and the frame will be attached to the machine.  The actual procedure takes about an hour – about the same amount of time as an MRI.  Then, they remove the frame from her head and she’ll be under observation for a few hours.  Then, she’ll be sent over to their rehab part of the hospital to work on some physical therapy.

So, that’s our day for tomorrow.  I hope and pray everything goes according to schedule.

I’m bringing my laptop with me to the hospital this time, so I can update you all much more quickly.


Written by Tracey

January 28, 2009 at 10:05 am

Update on Mom (1/27/09)

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Mom is still in the hospital, however she has been moved from the Neuro ICU up to the regular Neuro floor.  Her new room is very nice and is much more conducive for the rest of us.

Since she’s not on the telemetry floor, she’s lost most of the tubes and wires that have been connected to her since last Wednesday.

Her Gamma Knife surgery is on the schedule for Thursday (1/29/09).  So, she’s working with physical therapy to get a little stronger before her Gamma Knife treatment.  She’s still having a difficult time using her legs and she seemed particularly tired today.  I’m not sure why.  Maybe just changing floors late last night and being in a different room has thrown off her schedule and increased her fatigue.  I’m not sure, though.

She’s eating well, but her sodium is running a little low so she’s not been able to drink any water, coffee, or tea for the past six days or so.  Apparently, drinking these things reduces your sodium.  She is drinking orange juice and V8, but is really hoping to have some herb tea soon.  She’s missing that a lot.

I think that’s about it for today’s update.  She’s looking and sounding great.  We just can’t wait until the Gamma Knife surgery is done so she can get back to normal again and start living life to its fullest.

Again, thanks so much for your thoughts and prayers for Mom.  We all really appreciate them.

Written by Tracey

January 27, 2009 at 5:16 pm

Update on Mom – 1/25/09

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Well, I think we’ve come through the valley and are coming out on the other side.  I just got back from the hospital and Mom is doing just great.

When I go there yesterday morning around 9:15 AM, they had just removed the ventilator tube and she was breathing on her own again.  She was very alert and said she was hungry.  So, the nurses said we could order up some food for her from the hospital kitchen.

Trying to eat a proper “cancer diet” in the hospital has been difficult in the past, but with Barrow Neurological Institute they allow you to order what you want from a menu.  So, Mom has been getting lots of fruits and veggies and some chicken and fish too.  She hadn’t been eating much meat, but since it’s a little too difficult for us to try to make protein shakes for her in the intensive care unit, we decided to just go with a little chicken and fish.

Mom ate a good lunch and dinner last night.  I think that made a world of difference for her.  Plus, Dad had cut up some organic pears and some organic veggies and brought them for her from home.  She gobbled those up while waiting for lunch yesterday.

She was slightly anaemic yesterday afternoon, so the doctor ordered two units of blood and she received those during the afternoon and evening yesterday.  Her color did “pink up” a little bit after that.

Her nurses have been the best we’ve ever had.  They are all so caring and nice to Mom (and to the rest of us too).

Mom had a great night’s sleep last night.  She took little cat naps throughout the day yesterday, and then slept for six hours straight last night.  That might not seem like a big deal – but getting a stretch of sleep that long in the hospital can really be a miracle.

She wasn’t aggitated at all during the night and she slept like a baby until 6:00 AM this morning when one of the doctors came in to do a neurological evaluation of her.  She passed with flying colors.

She’s been in good spirits all day today.  The doctors are a little concerned about the platelets in her blood and are changing her anti-seizure medicine to see if that will correct the problem.

She’s slated to be moved out of the Neuro ICU and into a regular room later today – that is if the doctor feels that the platelet issue is resolved.

At this point, we’re going to believe that Mom is going to be right on schedule for her Gamma Knife treatment next Thursday – so she can be home in time for the Cardinal’s SUPERBOWL game!!  Go Cardinals!

I’m going back to the hospital tomorrow – so, I’ll post a new update when I get home.

Written by Tracey

January 25, 2009 at 5:55 pm

Update on Mom – 1/23/09

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I just walked in the door from being at the hospital with Mom since last night.  So, excuse my writing right now.  I did want to write and get some news out to everyone who’s praying for her and thinking about her.

I went back to the hospital last night and relieved Dad so he could go home and get some sleep.  Mom had a very rough night.  The Decadron is really doing a number on her mind and last night was the first time she became delusional and extremely irritated.  She only really got cat naps all night and I spent most of the night trying to calm her down.

At one point, her blood pressure soared to 182/97 and we aren’t really sure (still) what caused it.  I’m guessing it was a panic attack.  She was very freaked out and paranoid.  These are all symptoms of long-term Decadron usage.

About 5:00 AM, she suddenly went from being very talkative and irritated to lethargic.  The nurse initially thought it was because they had given her a small dose of morphine to help calm her down.  But, after a while, it became apparent that it was more than that.  At one point, she became completely unresponsive.  The Critical Care Unit was called and they told me that she either had a seisure or a stroke.  They would need to run some tests to determine what happened.

After looking at all the symptoms, their preliminary diagnosis is that she had a seizure this morning.

Because of the risk of another seizure, she was intubated – which was really difficult for her.  They were concerned about sedating her too much, because it would lower her blood pressure too much.  But, if they didn’t give her enough of a sedative, she would be awake and really uncomfortable with the breathing tube.  So, after a while, her wonderful nurse, Joe, found the perfect amount to make her comfortable (mostly).

Later in the afternoon the neurosurgeon, Dr. Porter, came in to update on what the options are.  He said after reviewing the MRI, he was very excited to see that the tumor in her brain shrunk from 2 cm to 1.3 cm.  It was actually even smaller than he initially thought.  He said “It’s either the Decadron, the Low Dose Naltrexone, or the Vitamin C.  I don’t know what is working, but something is.”  That was really, really cool.  It’s so nice to have a doctor who isn’t trying to convince her that natural and alternative medicine doesn’t work.  In fact, I think he’s very fascinated with her treatment and how well it’s worked.  I got the impression he doesn’t see this type of thing very often.

So, because the brain tumor is so small now, he’s definitely wanting to do the non-invasive Gamma Knife surgery.  He’s trying to get it set up tentatively for next Thursday.  The issue is —- guess —- an insurance holdup again!!!  That’s probably okay this time, as Mom needs time to recover from the seizure and get a little stronger.

When I left the hospital tonight, they were getting ready to take Mom for her MRI.  Dad and Gretchen were still there.  Dad is planning on staying overnight.

I’ll update you whenI get any more info.  Sorry if it’s a little rambling, but I’m really, really tired.

Written by Tracey

January 23, 2009 at 7:42 pm

Update on Mom – 1/22/09

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Thank you SO MUCH for your prayers, everyone.
My sister, Gretchen, and I took Mom to the doctor yesterday for an appointment with a neurosurgeon for a pre-consultation for Gamma Knife radiostatic surgery for a metastatic brain tumor (from her primary lung tumor).  When the doctor saw her yesterday, he was so shocked by her rapid decline (she can’t walk anymore, she is very swollen, etc.) that he sent us to the ER at St. Joseph’s Hospital in Phoenix.
His thought was that the brain tumor has grown in size since her last MRI six weeks ago and that we needed to do something in a hurry.  He felt she needed to have invasive brain surgery to remove the tumor and the pressure it was putting on her brain – causing the weakness in her legs.  He did not feel she would be a good candidate for the Gamma Knife procedure.
So, we went to the ER and they admitted her.  A barrage of neurosurgeons saw her throughout the night last night doing various neorological tests (touching her nose, pushing her legs, pulling her arms forward, etc.).  She did well on all those tests.  They also sent for a ton of lab work, did a CT scan of her head, chest, and lower back.  They also did an MRI of her brain at 2 AM this morning.
Gretchen and I stayed until about 8:30 AM, but we were so wiped out we went home to rest and get ready for the next shift (Dad came in to relieve us).  When we left this morning, we hadn’t spoken to her neurosurgeon about the findings of any of the tests.
The doctor came in about an hour and a half ago and spoke with Dad.  The MRI showed that the tumor in Mom’s brain has actually shrunk since the last MRI from 2 cm to 1.5 cm.  The doctor didn’t know what to say about that.  Mom has elected not to do any chemotherapy or radiation.  Instead, she’s doing a lot of alternative cancer treatments with her Naturopathic Medical Doctor, Dr. Jason Porter.
Well, between all the prayer and her alternative treatments, her tumor is shrinking.  So, it looks like the Gamma Knife treatment is back on the table.  From what the doctor said, all the bad symptoms she’s currently having are from the steroids (Decadron) they gave her to reduce the swelling in her brain – not from the brain tumor.  Now that the tumor has shrunk by 25%, they seem to think that reducing the amount of steroids they’re giving her will get rid of these symptoms. and we can proceed with the Gamma Knife treatment. 
To be honest, I think Mom is somewhat of an anomaly to them.  I don’t think they see many people who aren’t doing conventional cancer treatments, so they really don’t know what to say about the naturopathic and alternative medicine she’s using to treat something as serious as lung cancer.  This will be her first conventional procedure since her diagnosis back in August.
They are looking at Monday as the day to do her Gamma Knife surgery.  This is a little freaky of a procedure, so we would appreciate your prayers for her.  But, it does have a 90% success rate in dealing with metastasized tumors to the brain.  Anyone interested in knowing more about Gamma Knife can read their website at
Again, thank you all so much for your prayers for Mom.  We’re certainly feeling them.
I’m planning on getting ready and going back to the hospital tonight to relieve Dad so he can come home and get some rest.  Her Neurosurgeon, Dr. Randall Porter, from Barrows Neurological Institute (I know it’s confusing that she has two doctors named “Dr. Porter”) told Dad her team of doctors will meet with her in her hospital room tomorrow at Noon to discuss her treatment plan for Monday.
I’ll post about that when we have all the details.

Written by Tracey

January 22, 2009 at 5:55 pm