The Starfish Project

The combined effort of our whole family.

Archive for December 2008

Update on Mom (12/29/08)

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Mom is doing so much better now.  The Decadron steriods have been working well to relieve the inflammation on her brain and with three visits from the physical therapist Mom is just about fully recovered from the numbness and weakness in her left arm and leg.

She is no longer using the wheelchair and she has regained most of the movement in her left arm and hand.  She even carried a cup of tea into the livingroom yesterday from the kitchen.  She’s working on her typing skills and they are slowly returning as she practices each day.

This has been a scary chapter for our family – as we saw Mom suddenly become almost completely incapacitated in such a short time.  But, thankfully, her new Naturopath advised us to move quickly with a neurologist and with the steriods and it turned out to be advice that quite possibly saved her left side motor functions.  Had the pressure been on her brain for much longer everyone agrees that the possibility for permanent damage was likely.  So, we’re just thankful and rejoicing that this is one bridge we won’t need to cross.

Our family had a wonderful Christmas at Mom and Dad’s house.  We didn’t have the traditional Christmas feast this year because Mom can’t have so many of those foods.  So, we opted for homemade Mexican food this year.  We had fresh chicken Posole (a soup with red chile sauce, hominy, chopped green chiles, onion, garlic and oregano – and garnished with fresh chopped cabbage, diced avocado, green onion slices, and lime juice).  It was delicious.  We also made homemade red chicken and green chicken tamales too.  They were fabulous.  We prepared the corn masa ourselves and the ladies sat around the table making tamales on Christmas.  They steamed for an hour and we sat down for a delicious Christmas meal of tamales, organic refried beans, and organic Spanish rice.  It was all very tasty.

Mom celebrated her birthday on Friday.  She looked very cute for her birthday celebration.  I took some pictures at Christmas and on her birthday.  However, I left my camera at Mom and Dad’s house, so I can’t post any of the photos until I get my camera back.

Our family is believing that 2009 is going to be the best year we’ve ever had.  There are so many promises and answers to prayer lurking right around the corner and we believe 2009 will be the year we’ll see them come to pass.

Again, thank you all so much for your prayers for Mom.  The past month has certainly been our most difficult one yet.  However, currently, Mom is doing the best she’s ever done.  We’re still waiting to  hear back from Barrow’s Neurological Institute about Mom’s Gamma Knife treatment.  I’m sure the holidays have created some delays as people often take extra time off work.  But, I’m hoping we’ll hear something this week so Mom can start moving forward with this treatment.

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Written by Tracey

December 29, 2008 at 6:39 am

Update on Mom (12/16/08)

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Well, we’ve had a whirlwind couple of days – but, things have calmed down enough for me to sit down and update you all.  As you know, Mom had an MRI on Friday (12/12/08) of her brain at the recommendation of her neurologist, Dr. Kumar.  He felt pretty certain there was metastic activity in her brain based on the type of issues whe was experiencing in her left arm and leg.

So, on Friday morning Mom went to the lab and had a blood draw and then at 12:30 PM she had an open MRI of her brain.  Since she had such a tough time with the brain MRI back in August, we pushed for an open MRI and the neurologist gave her a prescription for one Valium to help with any anxiety.  She did really, really well with it and the MRI tech at SimonMed was really wonderful – allowing Dad to be back there with her to hold her hand.

She felt great when she came out and we went home to wait for the results.  We were only home about an hour and 20 minutes before the neurologist called to tell us that the MRI confirmed his suspicions.  Mom has a 2 cm brain lesion in the right upper part of her brain that’s putting pressure on the part of her brain that controls her left side motor functions.  He told us that we needed to get her started on Decatron (a steriod) right away to relieve the pressure on her brain.  He said the best place for Mom to be was in the hospital.  So, we got Mom’s things together and took  her to Banner Baywood Hospital around 4:00 PM.

The people at the hospital were all very nice and took excellent care of Mom.  Dr. Kumar was consulted by the ER doctor and she was started on the Decatron.  They gave it to her through her IV line with a push.  Within an hour or so of receiving it, she was already able to lift her left leg up and down.  I guess it works pretty quickly to relieve inflammation – so we saw results with it right away.

Mom consulted with an oncologist while we were there and he was a little irritated that she was seeing a naturopathic doctor.  He couldn’t sell his full brain radiation to Mom because we had already done the preliminary research on Gamma Knife radiation.  So, he agreed to give her a referral for that – which is done in Phoenix at the Barrows Neurological Institute.

Mom was discharged Sunday afternoon.  The Decatron has continued to relieve inflammation and each day since Friday she’s had more and more movement return to her left side.

We are now in the process of getting her set up for a consultation with Barrows Neurological Institute.  Currently, they are reviewing her records to determine if she’s a good candidate for the Gamme Knife radio surgery.  This is a non-invasive procedure that shoots a highly targeted beam of radiation into the lesion.  The surrounding healthy tissue is unaffected and there are none of the typical side-effects of radiation.  There is no hair loss, no fatigue, no burns, etc. 

From all the research I’ve done and from talking to Mom’s naturopathic doctor, there aren’t any alternative treatments we can do that will work quickly enough to reduce the inflammation on her brain.  Time is of the essence with this situation because we need to get that inflammation down so she can get her movement restored.  The longer the tumor presses on her brain, the more chance for permanent damage to her left side.

From everything I’ve read, Mom seems like the perfect candidate for the Gamma Knife radio surgery.  The best outcomes occur with patients who have brain metastasis that are under 3 cm in size.  Mom’s met is only 2 cm – and Dr. Porter told us yesterday that with all the steriods she’s been taking to reduce inflammation, it’s likely to be even smaller now (not that it’s shrunk – but, that it was likely swollen.  And, with the swelling reduced, the size will be reduced).  Gamma Knife radio surgery has a 90% success rate in tumor control – which is very exciting to us.

Mom is in great spirits.  She hasn’t lost her sense of humor and she and Dad laugh a lot together.  Dad has been a real pillar for her and he’s the best kind of husband any woman could ever hope for.  We have a day off from doctor appointments today – so, we’re all trying to rest up and catch our breath.  She sees Dr. Porter tomorrow for another high dose Vitamin C IV, and she sees her neurologist, Dr. Kumar, on Thursday for a follow-up.  We expect to hear back from Barrows Neurological Institute by the end of the week for Mom’s first step toward her Gamma Knife radio surgery.

Thank you all so much for your prayers and positive thoughts.  We can certainly feel it.  Things seem to just fall into place for us as we continue along this journey.  God is good and we know this part of the road will be just one part of Mom’s story.  This is the part of the story where the protagonist is up in a tree and the antagonist is throwing rocks.  Mom is doing a great job of dodging the rocks.  🙂

Written by Tracey

December 16, 2008 at 1:26 pm

Results of Mom’s 12/11/08 MRI of Spine

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Mom went in yesterday morning for an MRI of her spine to determine if the neuropathy is being caused by a metastic tumor.  Fortunately, we were able to get a rush on the preliminary report and it came back clean for cancer in her spine.  There is no cancer there.  However, it did show some compression in her spine which could be causing the nerve issues.

Mom has an appointment for later on today with a neurologist to determine exactly what is causing the paralysis in her left arm and leg.  Her new Naturopathic Medical Doctor, Dr. Jason Porter, believes it is being causesd by compression of a nerve in her spine.  There are a few other plausible causes too.  They can’t really start treating it until they figure out where it’s coming from.  So, hopefully, we can get some answers tomorrow once she sees the neurologist.

Her energy level is pretty low right now, but her spirits are high.  As always, she’s being a real trooper and fighting off the negativity that’s trying to bring her down right now.  I can only imagine how difficult it would be not to be able to walk.  So, once again, our family covets your prayers for my Mom right now.  We need the neurologist to find out exactly what is causing this so he can get it turned around.

I’ll post again when I get more information.

Written by Tracey

December 11, 2008 at 3:21 am

Update on Mom 12/7/08

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updateHere’s the latest on Mom.  She had a CT scan a few weeks ago and it came back with good results.  Her tumor is “centrally necrotic” meaning that it’s dying in the center.  So, that was fantastic news.  Also, that 9 cm protrusion that was there in her initial MRI is now gone.  She was coughing up some stuff about six weeks ago and it looked very strange – like tissue and blood clots.  The coughing fits only lasted a week or so and then stopped.  Fortunately, she had a coughing fit at her doctor’s office and they were able to send a chunk of what she coughed up to the lab for analysis.  The lab results showed it was part of her tumor.  So, we’re very excited about how well Mom is doing in terms of dealing with the tumor in her lung.

However, Mom is having the most problems right now with some severe neuropathy in her left arm and left leg.  It started out a month ago with just a little numbness in her pinky.  She told her naturopath, but she didn’t seem very concerned about it.  At one point (about three weeks ago) the neuropathy had traveled up her arm to the elbow and she had some involuntary muscle spasms.  It was very scary for Mom.  She told her naturopath the next day at her appointment and they placed two acupuncture needles – but that was it.  The neuropathy continued to extend up her arm and eventually went all the way up to her shoulder.  At this point, we felt she needed to have a doctor who was going to address this very debilitating issue – so Mom has switched naturopaths.  There were other issues too – but, the main thing was we really wanted Mom to have a doctor who cared about her, listened, and acted quickly.  We just felt she had become a number to her doctor and that’s not what a cancer patient needs.

She has started seeing a new doctor who’s much closer to home.  On her initial consultation with her new doctor, he was very concerned about the neuropathy and did some various tests to determine the type and severity of the weakness she was experiencing.  He was so concerned about it, he had Dad call her primary care physician from his office to get her set up for an MRI as soon as possible.  He said he could treat the neuropathy, but he needed to rule out a metastic tumor on her spine before he could do anything.  We really don’t think it’s that, but we certainly want to err on the side of caution and have it checked out.  That appointment was last Wednesday.

By Friday, the neuropathy had traveled to her left leg and she was unable to walk.  I was able to borrow a wheelchair for her and it was delivered to her on Saturday morning.  We’re just all having to deal with the frustration that this wasn’t addressed earlier by her former naturopath.  Perhaps it could have been resolved before it got this bad.  I feel Mom was ignored and brushed aside.  We’re all dealing with a lot of anger about this.  Mom did not receive the type of care we believe she was paying to receive.

We’re trying to stay positive in spite of all this.  Mom’s attitude is excellent and Dad has been doing an incredible job of taking care of her and doing all the things she’s unable to do right now.  We’re believing that we’ll get some answers next week about the cause of the neuropathy and her new doctor can start treating this so she can start recovering the use of her arm and leg.  The doctor was very encouraging that he could treat the neuropathy and help her fully recover.

Mom has begun taking high dose Vitamin C treatments again.  Her doctor has upped her dosage of Vitamin C to 75 grams (whereas she was taking 50 grams previously).  He is also adding the same things to her IV bag that her previous doctor did.  It’s been a good transition for Mom because her new doctor is only 4 miles from home (so her travel time is much less) and the cost of the IVs is less expensive than they were with her previous doctor – and she’s getting 50% more Vitamin C.  So, we’re really happy about that.  Plus, her new doctor is very, very funny and his calm and humorous demeanor has been like a soothing tonic to Mom.  He comes across as warm and caring and he seems very thorough in the way he is approaching Mom’s treatment.

Mom wants to thank all of her blog readers for all their encouragement during her journey.  We knew there would be days that would be more difficult than others.  This stretch of road is one of the more difficult ones she’s experienced so far.  We want to thank you all for your prayers and good thoughts.  Mom wanted me to give a special “shout out” to Mr. Ed.

As always, if anyone wants to contact either Mom or me, you can send us an email to:  starfishprojectmail@gmail.com

I’ll update everyone once Mom gets any news about the neuropathy.  Thank you all so much for everything.

Written by Tracey

December 8, 2008 at 12:36 am