Update on Mom (5/19/09)

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 (4/14/09)

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

Update on Mom (3/5/09)

Well, 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.

She 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

Mom’s Home From Rehab (2/20/09)

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

Mom is in Physical Rehab Now

Mom was discharged from St. Joseph’s and transferred to a rehab facility in Mesa on Saturday night.  It’s a lovely place very close to home for me and Dad.  She needs a lot of physical and occupational therapy because of the muscle weakness (myopathy) created by the Decadron.  So, they anticipate they will keep her there for two or three weeks to recover.  She will have several hours and sessions of physical therapy every day to get stronger.

She is in a private suite (which is really nice) and is being well cared for.  The staff are all so nice and friendly and the place is really clean.

I’ll bring my camera and take some pictures of her over the next few days so you can take a peek at her.

She has done some moving around since the vertebroplasty and doesn’t seem to have any pain in her back anymore.  Yeah!!  We’re so happy about that.  So, now it will be much easier for her to do her exercises now that she’s out of back pain.  She’ll only have to worry about getting stronger – and not worry about pain management (which can be all-consuming).  Anyone who’s had chronic pain knows how difficult it is to work through it to do anything.  So, we are very grateful that the pain has been relieved by the back procedure.

Thank you all so much for all the prayers and positive thoughts for Mom over this past month or so.  It’s been a very difficult time for her (and for us too) and we’re so happy to be on the other side of all of it.  I’m guessing our girl will be up and about (and causing trouble again) in no time.

I’ll let you know if anything changes…

Tracey

Mom’s Vertebroplasty was Successful

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

Mom’s Gamma Knife Procedure

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

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.

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

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!

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

Noon – Step 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

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

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,

Tracey

Mom is Home!

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 …

Tracey

Weesa Goin’ Home (1/30/09)

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: www.eastvalleynd.com.  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…

Tracey

Thumbs Up & Thumbs Down — The Waiting Game

Well, Mom is still having some fits with her thumb.  They came in and did a Doppler ultrasound of her right neck and all the way down her arm to her thumb.  The blood flow was really good up top and even below the elbow.  but as soon as they got to the wrist and thumb, the blood flow was pretty poor.

So, again, the mad scramble was on and doctors were called, nurses were rushing around, and I was getting pretty concerned.

First, she saw her internal medicine doctor.  He was very nice, but didn’t really know much about the thumb issue.  Then, the vascular surgeon came in to see her and he was very nice.  He basically told us that it’s a wait and see situation.  He didn’t feel that doing an additional surgery would benefit her at this point and that we needed to wait and see.  The tip of her thumb is still warm (meaning it’s getting some blood flow) and it’s not a solid black color.  It’s kind of a mix of purple shades.

Here are some pics of her thumb and hand so you can see what she’s dealing with right now:

  

  

 

 

 

 

 

 

  

 

 

 

 

 

 

So, we’re going to be doing a lot of praying and a lot of visualization exercises about the blood flowing into Mom’s thumb all the way to the tip.  If you’re one of our prayer warrior friends, we ask that you please pray for this too.  Now, we just get to stand back and watch God work.

Until next time …

Tracey