The Starfish Project

The combined effort of our whole family.

Posts Tagged ‘Updates on Mom

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

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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

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 …

Tracey

Written by Tracey

April 24, 2009 at 1:17 am

Update on Mom (4/14/09)

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Well, it’s been over a month since I updated the blog.  It’s been a little crazy busy for all of us, but I do apologize.

Dad and I took Mom for an MRI appointment today at SimonMed in Mesa for a scan of her brain and a CT of her chest.  We took her in the Towncar and we hadn’t used it for her in a long time.  But, she got in and out of it just fine.  So, we’re so happy we have more options for her.  Previously, it had been a little too low for her to get in and out of.  But, she didn’t have any issues today.

In fact, we didn’t even need the wheelchair at all today.  She used her walker and walked inside.  And, she used the walker to come outside after her appointment.

She had the MRI of her brain.  It was an open MRI, but she said it was still very loud and annoying.  She liked the last one better — but, she did get a Valium for that one.  Next time, we’ll make sure we give her one before she has another one.

When they got ready to do her CT scan, they saw in her paperwork that she has a sensitivity to iodine.  I didn’t realize that they have to do a contrast dye for the CT scan.  She had one at St. Joseph’s back in January and I don’t remember them giving her a contrast dye.  But, I guess they did.  Anyway, they said they weren’t aware of her iodine allergy and didn’t feel comfortable doing the CT scan without contrast (because they wouldn’t be able to see much).  They said typically the patient is given a preventative treatment of prednisone and benadryl a few hours before the CT scan to make sure they don’t have a reaction to the iodine.

So, unfortunately, we left today without getting the chest CT done.  We have to reschedule to  have it done at the hospital – where they are much more equipped to handle this sort of thing with her iodine allergy in case she has a reaction.

Mom is still having trouble with laryngitis.  It comes and goes – but, seems to be more pronounced.  That’s next on the list of things to have checked out by her primary care physician next week.  It could be a virus, a fungus, or a myriad of other things.  We will probably get a referral for an ear, nose and throat specialist and have them take a look at it.  I know it’s bugging Mom a lot that she can’t communicate very well.

Mom is much stronger than she was when I last posted.  It’s been a slow journey back for her, but we finally feel like she’s on the other side of these issues.  She’s not using the wheelchair at home at all — and hasn’t for a long time now.  She had only been using it for her twice weekly appointments with Dr. Porter since it’s quite a long way from the parking lot to his office.

I’ll try to snap some current pics of her when I see her next so you can see how great she looks!

Until next time …

Tracey

Written by Tracey

April 15, 2009 at 4:13 am

Update on Mom (3/5/09)

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mom030409bWell, Mom has been home from the physical rehab facility for almost two weeks now and she’s getting stronger every day.  Her biggest victory has been that she’s been able to go back to see Dr. Jason Porter, her Naturopathic Medical Doctor and resume her Vitamin C IVs.  Yesterday was her first treatment since January 14, 2009.  I took this picture of her yesterday during her treatment.

She’s still wearing the TLSO brace to support her back and stabilize it so she doesn’t twist and/or turn.  It’s causing her some discomfort, but overall it’s fine.  She’s not having any pain with her back whatsoever.  So, we feel very blessed about that.  We had been very concerned about  her level of pain with her back.  Now, that issue has completely resolved.

mom030409dShe was able to use her walker to walk out the front door, down the little sidewalk that leads to the driveway, down the driveway, and (with a little help) get into the car for her appointment.  This was the first time we’ve been able to transport her without a wheelchair transport service since she was hospitalized back on January 21st.

Once we got to Dr. Porter’s office, we used the wheelchair to get her into his office.

It was so nice to see everyone there again.  We talked with Dr. Porter for quite a while as he got her IV ready and hooked her up.  He started her back on her usual 75 gram bag of Vitamin C with an energy push at the end.

He looked at her thumb and felt he could help get the blood flowing into it a little better, so he did three acupunture treatments around the thumb.  We’re just believing when it’s all said and done her thumb will be completely whole again.

She finished up her last Decadron pill last Friday – so it’s been almost a week.  We just can’t wait until all that stuff is out of her system.  It’s not been her cancer – but the Decadron that’s been our biggest challenge since she was diagnosed back in August 2008 with lung cancer.  We call it the “demon drug” because it’s so insidious.

In the above pictures, she’s at Dr. Jason Porter’s office for an IV Vitamin C treatment.  She’s sitting in her wheelchair during her treatment (since it’s easier for her to stand up because of the arms) and she’s wearing her back brace.  Hopefully, she’ll only be in the brace for a few more weeks.

When we got her home, we were helping her with the walker in the driveway and all of us were with her (me, Dad and Gretchen).  She had been doing so well with her walker that we weren’t concerned to have her stand with it.  Well, Dad turned to shut the car door, I was dealing with the wheelchair in the back of the SUV, and Gretchen was in front of her.  It was like for one split second we all took our eyes off Mom and … wouldn’t you know it … down she came in that one micro-second she wasn’t being supervised.  She says her knees gave out and she came down landing on her bottom.  She bonked her head pretty good too.  But, overall, besides being pretty shook up, she was fine and uninjured.  She complained of a little bit of soreness today – most likely from the fall – but she is fine otherwise.

Today was my birthday and we all got together tonight.  Gretchen made me a homemade pumpkin cake with cream cheese frosting.  It was delicious.  Mom had a bowl of fruit – which is about as sweet as she can handle these days after being off sugar all these months.

A good time was had by all.

I think Mom’s at the place where she can begin to have short phone calls from her friends.  Dad, Gretchen and I talked about it and we think it would do her a world of good to hear from you.  So, feel free to call the house now to chat with her.

Until next time…

Tracey

Written by Tracey

March 6, 2009 at 12:01 am

Mom’s Home From Rehab (2/20/09)

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Hi Everyone,

Mom is home from rehab now.  She came home yesterday afternoon (Thursday).  She has made great improvements during her rehab therapy and is definitely on the road to recovery.  On Monday she saw the vascular surgeon, Dr. Brink, and he removed the stitches from her arm (from when she had the blood clots removed).  He said her thumb looks good and wants her to see a hand doctor in a few weeks when she’s feeling better.  The pad on her thumb has turned very dark and is dry.  This is a good sign – as any weeping from it would be very bad.  We’re just believing that there is going to be wonderful new skin under that dark skin and the pad of her thumb will be completely restored.  At this point, we still just have to wait and see what’s under there.  So, your prayers for Mom’s thumb are still very appreciated.

On Tuesday she saw her Neurologist, Dr. Kumar, and he said all of her neural function was great.  He said she was a little weaker on her right side than her left (which is sort of strange since it was her left that was so much weaker before).  But, this is probably just due to the Decadron.

She is weaning down to her final dosages of the Decadron and should be completely off of it in eight days.  She’s only on 1mg twice  a day for three more days, then she’s dropped down to 1mg daily for five days.  After that, she’ll be done.  We’re so looking forward to that!

We’re just so happy to  have her home.  She can walk with the walker now and isn’t even using the wheelchair at home any longer.  We’ll just use that when we leave the house for doctor appointments until she doesn’t need it any longer.

We had a really nice afternoon and evening.  The whole family got together and I made a huge pot of posole soup (Mom’s favorite).  Mom came home around 3:00 PM and visited with Dad and Gretchen for a while.  Then, she took a nap while I made the soup.  Once it was ready, she came out into the living room around 7:30 PM and visited with everyone.  Then, we ate together.

Little David was playing with the box that Mom’s shower bench came in.  Sophia drew a race track on the box with a Sharpie and David ran his little hot wheels around the track the rest of the night.  It’s amazing how fun a box can be when you’re two years old!

One by one everyone started heading home and Mom, Dad and I watched a few of Mom’s TV shows she had TiVo’ed from Animal Planet.  They were really interesting.

Then, around 12:30 AM, Mom was ready for bed.  So, she used her walker and got herself down the hallway and into her very own bed.

As you can imagine, it’s wonderful having Mom home.  Although all of her nurses and doctors were really wonderful and treated her very well, there’s just nothing like being home.  She’s finally going to get some rest.  It’s difficult to get good rest when you’re in a hospital or rehab facility because it’s a constant parade of people through the room at all hours of the day and night.  Now, she can get caught up on her rest and continue to get stronger every day.

Her only complaint today was that her brace is a little uncomfortable to wear for long periods of time.  She’s wearing a TLSO brace to stabilize her back after her vertebroplasty surgery.  I’m not sure how long she has to wear it.  I vaguely recall someone (maybe the physical therapist) saying she had to wear it for six weeks, but I’m really not sure.  But, when it got really uncomfortable, Dad adjusted it and it seemed to help quite a bit.

Considering how much pain and agony she was in just a few short weeks ago with her back, the small amount of discomfort from her back brace is really not that big of a deal.  The brace is in two parts and attaches with velcro on the sides in three places.  They call it a “turtle shell” brace becauses the way it goes together does resemble a turtle’s shell.  When she was in St. Joseph’s the company that makes them, Hanger, came to her hospital room and measured her for the brace.  So, it’s custom made for her.  Once she was at the rehab facility, she went to Hanger and had it adjusted because it was too long and would ride up under her chin – making her feel like she was choking.  It’s much better now, but still not the most comfortable thing in the world.

At this time, we’d like to ask all of Mom’s friends to please resist the urge to call her at home.  While she’s come a long way in her recovery, she’s still got a ways to go yet.  She sleeps at odd times throughout the day and she really needs to get her rest.  As she feels better, she’ll start making phone calls to chat with her friends.

She has definitely appreciated all the cards and letters you have been sending.  They make her day when she gets one in the mail.  On some of her particularly rough days, just knowing that she has people out there who are praying for her and who love her has really helped her get over the emotional hurdles of all this.

I’ll update when there’s any new news.  Her next goal is to be able to get back to Dr. Jason Porter’s office and resume her high dose Vitamin C IVs.  It’s been over a month since she’s had an IV and we’re anxious to get her going on them again.

Thank you all so much for everything!

Tracey

Written by Tracey

February 20, 2009 at 1:35 am

Mom’s Vertebroplasty was Successful

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Mom went down again to the Pre-Op area at St. Joseph’s/Barrow Neurological Institute this morning at 6:30 AM.  Her platelets were still a little low, so they gave her a platelet transfusion starting at 6:00 AM.

Dr. Porter came in and talked to us before the surgery.  He said there were a few spots on her CT scan that he wanted to biopsy to check for metastases from the lung cancer.  Honestly, we didn’t think it was that.  The Lord had given us a peace about that, so we weren’t concerned about it.

After he answered our questions about the procedure, he asked if he could pray with us.  We all four joined hands (Mom, Dr. Porter, Dad and me) and Dr. Porter led us in a wonderful prayer for Mom’s surgery.  We were so happy about that.  We’ve never had a doctor pray with us before.

Dad and I went to breakfast and went back up to the OR waiting room around 9:00 AM.  We watched Regis & Kelly and the Today Show with Kathie Lee and Hoda Kotb.  At around 11:00 AM, Dr. Wilson came in and told us that Mom was out of surgery and that it went well.  At around 11:20 AM Dr. Porter came in and told us that they repaired three of her lumbar vertebrae and that it all looked good.  He said he didn’t do a biopsy because there was nothing abnormal there.  Everything looked like normal tissue and just typical compression from osteoporosis.  He said Mom was awake and we’d be able to see her in about 30 minutes or so.

So, we’re still in the waiting room, but thrilled that Mom came through everything well.  Dr. Porter wants her to stay overnight for observation tonight, and then we’ll start talking about bringing her home tomorrow.

I’ll update you all if anything new and exciting happens between now and then…

Tracey

Written by Tracey

February 5, 2009 at 11:43 am