We have about 6 inches of snow on the ground and it feels like it means to stick around!  The girls are playing in the pep band for a bunch of volley-ball games tonight, or I’m sure they would be out on the trails with head-lamps in the dark

Chemo went kind of “normal” yesterday.  I got there on time, but my port in my chest refused to work and give blood.  After trying for about 20 minutes my nurse Kim ordered a drug called “Cath-flow” (I think that’s the name…..)  They put some in the port and leave it alone for a few minutes to let it unclog the port.  While that did its job, Dr Kelley did the chemo in my brain.  The pressure in my head is fine and the infusion went fine.  Once again, even though I got strong anti-nausea drugs before the chemo, I still managed to throw up!   Grrrrrr…..that just wears me out.  At least we know which chemo makes me sick since I hadn’t had the other one yet. 

 

About an hour later they got my blood numbers and it was fine for me to get my last chemo.  By the time that one was done I was feeling mostly just fine….didn’t want anything to eat, but didn’t feel sick anymore.

 

It is colder than I would like it to be, so I think I will start a little fire in the fireplace and have some tea.

 

 

I got my chemo on Monday.  I talked to the doc about my case of the trots and they told me to take an Imodium every time I had an urgent visit to the bathroom. I laughed at them and asked if they understood that I would have taken about 50 of them in one night?!?  They promised that things would “stop” before that, so I took them at their word….I only got to 6 pills!  I have had things under control since then.  Who would have thought you can take that much??

 

I keep trying to convince myself my eyes are getting better, but I don’t think they are honestly getting any better.  I am at the point where I can function, but I still can only use one eye or I see double.  I can use the  computer for a half an hour or so before my eye gets tired.  I am really beginning to wonder if this will be permanent. 

 

We got our first snow of the year day before yesterday and we are getting another little bit right now.  It is chilly to say the least.

 

No other big news here.  I have chemo again on Monday of next week.

 

 

I have had a most amazing case of diarrhea since Tuesday night.   If just that statement makes you want to go “Ewwwwwwww!”, I suggest you just stop reading NOW!

 

If I switch to a total liquid diet (did it 2 different days) my trips to the "library" cut down to once every 2 hours or so.  If I eat even simple things like toast or bananas, I ups my visits to about every 30 to 45 minutes.

 

I have lost about 5 pounds this week and NOT in a good way.  The doc ordered a test to see if I have this mutant bacteria called C-difficel (sp?) and the test came back negative.   Some day I will regale you with the story of “collecting my sample” for the test.  Suffice it to say here that there are some things humans are not meant to mess with, even while wearing gloves.

 

I am supposed to have chemo again tomorrow

 

This is no longer even remotely funny. 

I have used all my good fart and poop jokes. 

I am afraid to fart. 

I am sick of stomach cramps.

I can’t even go eat chocolate to make myself feel better!

 

Gotta run…..again…..

Good morning all-

 

Leave to me to declare a “hooky Day” and then wake up at 4am!  Both of the girls are sick; Katie has a nasty cold and Carol is still recovering from the stomach flu, so I told them to stay home and rest today.

 

I looked back over my last few blogs and they are depressingly similar:

 

“poor me…blah, blah, blah….this hurts, that hurts, this part of me seems to have quit working……”ad-infintium.  Even I’m sick of reading it!

 

My goal for today is to spend some time recognizing that, yeah, My day may not be perfect, but parts of it are still pretty wonderful.

 

WE had a beautiful day yesterday.  It was crisp and cold and really smelled like fall….kind of like wild berries in the woods and snow in the air with a hint of smoke as people fire up the wood stoves.

 

My chemo went well yesterday.  We did my regulard Abraxane and the Metholtrexate in the poprt in my brain.  The pressure in my CSF was normal (it was high during surgery, so we will be checking it for a while)  We also slowed down the infusion of the chemo in my head because I had been told it might help with the vomiting…..woohoo….it did J

 

While I was getting my chemo yesterday, a good friend of mine, Denise, came by to visit which is always nice.  Unfortunatly; she also had some bad news about a mutual friend Margie.

 

Margie’s sister lives in Florida and has just been diagnosised with cancer for the third time.  I don’t have a lot of details, but the tumor is large and spread in her abdomen and is interfering with her renal system.  One of her kidneys is at risk.  I will have more info soon, but please keep Margie and her sister in your prayers.  Margie is trying to get things organized so she can go down and be with her sister.

 

I also found out that my Uncle (really 2^nd cousin, but we always call him uncle) Jerry Bradford has Lung cancer.  The last I heard yesterday they are planning on removing one lung.  Please keep the whole family in their prayers.

 

I know I owe dozens of people thank-you notes and phone calls.  Please know that as soon as I can actually write a note without such a ridiculous amount of effort I will try and catch up.  I really should get the kids to take a photo of me typing….I sit in the recliner, pile blankets on  my lap until the screen is level with my nose, wear my eye pactch on my left eye with +3.50 reading glasses over them( the strongest I can find) I set the type size to 28, stick my arms out to the side like chicken wings and practice my hunt-and-peck…..I think it may loose something in the description, but I look like a true dork ;)

OK….I fear that a lot of this willl look like it has been typed by a drunken monkey.  If it is really making all my school-teacher friends crazy, please feel free to pull out a red pen……feel better?

 

 

Sorry I made you all wait for news!  We got back to the hotel at about3:30 and slept most of the afternoon and early.

 

I really prayed two nights ago to get rid of my anger.  It was just making me sick!  Got  to the doc for pre-op visit and long story short, w worked  almost everything out.  The rest we will deal with when I am feeling better….more news on that later.

 

Surgery went smoothly except one weird jump in BP which didn’t last. Only local, no general anesthetic so I got to come back to the hotel for the night.

 

There are already improvements.  My right eye seems slightly more clear, my pupil in my left eye  is beginning to react to light,

 

The Doc said that he removed over 20 CCs of CSF during the urgery because the pressure was so high, that is what causing headaches which seem to0 be gone for now THANK GOD!

I still have quite aa bit of pain from the incision, but that should go away in a couple of days.

 

OK….too tired for more

 

Thanks for the prayers

 

 

Dr. Kelley let Neuro-dud-doc of his “mistake” Friday and Dr. Kelley said he wanted to get it fixed ASAP….well, I guess his idea of ASAP is far different than mine.  After 2 days of phone tag with everyone at his office they finally admitted their “first available” surgery appointment is nex TUESDAY! 

 

Needless to say I flipped my lid.  John got the office number for the head of neurosurgery and neuro – oncology at the University of Washington.  I called then and after a long explanation they said to gather up a whole list of records and scan CDS and Fed-ex them down  They though it I decided to fly down they could do the surgery mid week next week.  They said send the records and I can decide any time in the next few days if I want him to do the surgery.

 

I also got the number for the “risk Assessment” office at Providence hospital.  I think that number should be listed under “Don’t sue us please!”  The woman totally kissed my butt, but I have no idea if anything will come of it.

 

So….no big actions, but I feel like I have done something.

 

Since I am off my celebrex due to not taking anti-inflammatory drugs before surgery, I am having a heck of a time finding something that takes care of the headaches and muscle pains, plus when I am in pain it is a lot harder to control the puking…..TMI, but welcome to my world.

 

To tired to type more.  Hopefully tomorrow I will have some kind of news on a surgery date….soon!

 

 

OK, I just typed all the cuss words I know and then erased them.  I’m not sure if it helped anything but I am a little calmer now.

 

I had my MRI today and in a nut-shell my neurosurgeon messed up.  The ommaya reservoir was inserted THROUGH the ventricle of my brain.  Dr Kelly *the good Doc* said that the end of the tube from the reservoir is irriting the cranial nerves so that I can’t see  ,,,,which means that I was right to feel like the neurosurgeon and his partner were blowing smoke from the very beginning….

Which ALSO means if they would have done a scan 2 days after my surgery instead of insisting that there couldn’t be anything wrong with their port I would not have spent the past 2 weeks puking, not being able to see and suffering from bad headaches……Grrrrrrrr

 

OK, so now Dr Kelley is talking to all the docs to see what is next.  I can’t get metholtrexate through the Ommaya since it is not putting the drug in the right place.  I can’t bet my Avastin because it causes bleeding and I will need more surgery, and once we get his damn port out, I will still have to get a new one!!!!

I am so mad about all this I am spitting nails.  Please pass the word….I just don’t have the energy to type more……

Hi all -  I am still typing “in the dark” here.  Vision is about the same.  I had chemo on Tuesday, including the CSF chemo.  I quit the steroids (thank God) so I was able to sleep last night.  I had a long conversation with my doc and her thinks I might have a hematoma or swelling in my brain from the surgery.  There is a slight risk it is a tumor, but since the vision problems started right at the time of the surgery, it is more likely that it is related to that somehow.

 

I have chemo again on Friday as well as the brain MRI to figure out what the heck is going on.

 

ANYWAY…I still am having a really hard time reading, so I am far behind on everyone’s news.  Thanks to all who have been cooking, writing cards, driving my kids, praying, calling and keeping my spirits up.

Please excuse typos....still having lots of vision problems.  I have not seen any big improvememnt invision, but headaches are better.  Chemo throught the port is easy, way better than the spinal taps.  Bad cell counts are down from 80 to ONE!  Hopefully the vision will follow.  I will try and report when I can.  Love all of you guys.  Keep the prayers coming

 

 

I’m home from the hospital.  The surgery went fine, more later on that.  The bad thing is it has affected my eyes again.  Seeing double and pupils not reacting correctly.  also nausea is back. Not sure if it it from the drugs or trauma and swelling from surgery.  Thank you all for the prayers.  I will try and update soon as vision and typing skill allows.  Please spread the word as I don’t have the energy to post on the boards.

 

 

That is one of the most surreal statements I have ever typed!  The neurosurgeon’s office called today and scheduled my pre-op visit for Thursday.  I asked the nurse that called if there was anyway I could schedule the surgery for the following day.  She said she would call me back in 10 minutes and I was scheduled to have my Ommaya reservoir placed on Friday!

 

After several other phone calls to check with all the docs, we have a plan for next week. 

 

My Oncoligist wants me to skip my Tuesday chemos.  In fact she said the Spinal chemo response has been so good she though I had earned a break :)  The neurosurgeon will give me the first chemo via the ommaya before I leave the hospital.

 

So:

Thursday at 2:15 in Anchorage – pre-op visit

Friday 7:00 am surgery at Providence Hospital in Anchorage.

Saturday – get out of the hospital but spend one more night in anchorage before driving home.

Sunday – Drive home from Anchorage.

 

The surgery has a one-day stay in the hospital if everything goes well.

Now that it is scheduled I am wigging out a bit.  I am so glad the spinal taps should be over, but it that old “the devil you know” thing.  I keep getting told this surgery will be a breeze, but I’m still bothered by it.

 

Please continue to pray that everything goes smoothly and that these bothersome symptoms go away before the surgery so I can go in to the hospital feeling strong.

Hand still shaking too much to type more……

 

 

I have been “off-line” for a couple of days.  The double whammy of the regular chemo and the 2 spinal tap chemos a week caught up with me.

 

I had both on Monday, slept about 20 hours on Tuesday, slept about 18 hours on Wednesday.  Last night the nausea came back and I had about a 4 hour stint of nausea and vomiting…..finally got that stopped with drugs and was back at the hospital again today.  Between Monday and today I lost 8 pounds, so I got some good IV nausea meds and hydration before another spinal tap for chemo.

 

I am just about worn to a frazzle.  My new side effects include a palsy like shaking that makes me look even more like a total drunk, weird headaches (not as intense as the ones a few weeks ago, but hard to get rid of), muscle cramps from hell and total exhaustion.

 

On the flip side of the coin we do have some good news.  My CSF cell count that started at 80 is now down to 5!  My   vision is still not right, but it is getting better every day.  My doc also said as soon as my cell count gets to zero we can switch to once a week spinal chemo.

 

I still don’t have a date for the neurosurgery.  Too tired for more…..big hugs to everyone.  Keep the prayers coming.

 

We had a nice weekend. 

Friday night the girls had a school dance and had a good time.  Saturday was Carol’s first cross country race of the season.  She ran a personal best in the race.  All of her hard training is paying off. 

 

Today we went to church and then the grocery store.  We came home and made a really easy crock-pot chicken tortilla soup Bobbi gave me the recipe for.  Of course, I had to freelance and change things a bit, but it made a huge pot of soup and was really good.

 

Bobbi, Shea, Mom and Dad and Katie’s friend came over this afternoon and we tie-dyed a bunch of t-shirts and then had soup for supper. 

 

I am s-l-o-w-l-y getting better.  My vision is much better, but still not right. The good thing is that I am getting better.  The bad thing is I really can’t use both eyes yet, but it is close enough to right that I TRY….then I end up frustrated and headachy….not fun.  I keep hoping that I will open my eyes in the morning and things will be totally back to normal, but not yet.

 

I will get my regular chemo and my CSF chemo via spinal tap tomorrow.  I am beginning to dread these spinal taps.  It just stinks that I have to do this twice a week.  I am just trying not to dwell on it and to live in the moment.

 

Hopefully I will have some word tomorrow on when my surgery to install the port in my head will be.  That is another think I am trying not to think about too much…..

 

The docs insist this is a “minor neurosurgery”.  Well excuse me, but when it is your head they are drilling a hole in it doesn’t sound too damn minor.  I just want to get it over with.  As always the anticipation is not fun.

 

This week please pray that I will continue to improve medically and that my body does well through all this treatment.  Also please keep my family in your prayers.  I have been more than a little bit grouchy the past few days and I am afraid they are the ones that get to deal with it…..

Have you ever had a really, really bad case of the flu?  The kind that keeps you in bed for 2 or 3 days?  Then on the day you just barely start feeling better you actually have a worse day than when you were really sick because you are trying to get up and get something done?

 

Well, that’s kind of what is going on with me.  I was really sick on Sunday night through about Wednesday night.  Now I am feeling much better, not anywhere near 100%, but at least 60 or 70%. 

 

So I decided to try and unload the dishwasher, and promptly broke a glass.  I got that cleaned up and poured a cup of coffee and went to sit in the recliner and drink it….and promptly knocked over a glass of water, which spilled on my computer power cord.  So I was cleaning that up and dumped a little box that holds earrings all over the floor….where I can’t find them because I still can’t SEE them….and that was just in 30 minutes.

 

My eyes are getting better.  I can see just well enough that I keep trying to leave both eyes open.  Then my eyes get all wacky again and I now have a big headache from trying to see normally.

 

I am glad to be getting better, really I am…but I am so impatient that I am getting grouchy. It is kind of like the old joke:  God please give me patience and I want it RIGHT NOW!

 

I have to keep reminding myself: Baby steps….Baby steps.

 

I’m going to go reheat my coffee and try again.  Let’s hope I can make it without breaking something else.

 

 

 

 

 

Last night my prayer was for just a tiny bit of visual improvement to make it easier to keep the faith. 

At 5:07am I woke up and saw ONE alarm clock with both eyes!  Yeah!  It doesn't last, but for the first time in a couple weeks, if I slowly open my eyes and look at something close to me I see ONE thing!  I think the chemo is working.

I also got some good numbers from the lab, though I need to learn what they really mean.  Before I started my CSF chemo they did a test called a "cell count" on my CSF.  It was 80....I guess 80 "bad cells" in a certain amount of fluid.  After just one Metholtraxate it was down to 19.  The doc was excited, so it must be good.  Hopefully tomorrow when I get my tap I will get more info about what it really means.

 

 

 

Well, Mayo finally came through with a definitive diagnosis of breast cancer mets to the spinal fluid.  It took about 6 tests, but they finally found a cell they can be sure of.  In a way it is kind of a relief.  For a few days they were really worried I had some type of lymphoma, which people can get from chemo.  At least this is a cancer I know….

 

I had my second spinal fluid chemo yesterday.  I can honestly say I am getting more than a little tired of twice a week spinal taps.  I also got my regular Abraxane chemo.  I am off the Avastin for the time being. 

 

I have been having really bad nausea that was not being controlled by the regular nausea meds.  Yesterday I got a drug via IV called Aloxi (sp?) which got rid of the nausea.  Thank God for who ever discovered this drug.  Puking gets really old after a few days. 

 

I have also been having really intense headaches when I move around very much.  I still have bad double vision when I have both eyes open, but I am getting a little more used to wearing the eye patch.

 

This is really the most disabled I have been since this whole thing started.  I am wobbly when I walk, can’t see straight and I have been forbidden to use sharp objects, hot things, or the good china!  LOL  I am a walking accident waiting to happen.

 

Are you tired of my whining yet?  ….On to the plan….

 

The chemo I am getting in my spinal fluid is called metholtrexate.  I will be getting it twice a week until further notice.  After I have been off the Avastin for a few weeks I will be going to Anchorage for neurosurgery.  I will have a type of port called an Omaya (sp?) reservoir placed in my skull.  They will drill a small hole through the top of my skull and put a catheter down into the ventricles of my brain.  Then the reservoir will be right under the skin of my scalp.  That way they will be able to fill it with the chemo without doing a spinal tap.

 

The docs assure me that it is a simple surgery….I’m not convinced yet, but I trust them and I sure would love to quit getting the spinal taps….so I guess we are going forward.

 

We had a good time at the fair last weekend.  I was pretty sick, but I was able to take a walk around a couple of times and see the kids ribbons….they did great as always, lots of grand champion ribbons.  I spent most of the weekend resting in the camper.

 

I’m sure I am forgetting something, but what’s new?  I will try and update soon but reading and typing are hard right now.  Thank you all so very much for the e-mails, cards, flowers, meals, and mostly the prayers!  I hope my vision improves enough soon for me to respond to everyone in person, but please know all your support is very much appreciated. 

hey there-

Just wanted you guys to know I had my first chemo to the spinal fluid yesterday....not too bad, but I am sure tired of these spinal taps!   The radiologist said "We have to quit meeting like this" when he walked in the room for my 3rd tap in 9 days!

Not much has changed physically.  The chemo takes a while to work.  I am taking some drugs for nausea, but there really isn't anything I can take for the double vision.

I want you all to know I will not be on line until Monday.  I'm taking some time for family fun (I hope) and don't want you guys to worry.

Thanks for all the prayers and hugs.

 

 

Yesterday was tough.  We had to leave for Anchorage at 6am, not a time I am moving very well yet.  I had to fast for the PET scan, but they wanted me to drink water and take my normal pills…..well THAT was a bad plan.  We didn’t get 20 miles down the road before I had a bad case of motion sickness and ended up vomiting beside the road.  So much for those pills!  Riding in the car with the double vision is just nasty.  If I keep my eye open it is all blurry and swirled.  If I close my eyes things spin…..let’s just say it was a long trip.

 

When I got there for the PET I had to drink about a quart of the lovely barium gook, on a queasy stomach.  From there, things started to look up.  The nurse who injected the nuclear contrast was a wiz with the needle and got me on the first stick.  They gave me a xanex pill because they want you kind of dopey and calm. I took a nap for an hour waiting for all the contrast to get where it needed to go and then spent about 45 minutes in the PET scan machine.

 

John and I just hung out in the car….actually, I reclined my seat and slept for 3 hours while john read.  The Xanex really knocked me out.

 

My Dr’s appointment had mixed news.  My PET scan showed a wonderful reduction in the amount of cancer in my bones and lymph nodes.  I would say at least 75% of the cancer is gone, maybe more.  The spot on my liver is gone too.  The only slight negative is that there seems to be a bit more cancer in the lymph nodes in the center of my chest…all in all a very good report.

 

The flip side of the coin is that my oncologist is quite sure that the vision problems I am having is the cancer in my spinal fluid.  I guess that it is sometimes very hard to find the actual cancer cells in the fluid.  She said that my symptoms, combined with the chemical changes in the fluid and the fact that they found large cells that don’t belong add up to the cancer being there.  She said about half of people with this type of mets that has not progressed very far are really hard to diagnose.

 

SO…unless the labs come back from Mayo today totally clear, we are going to presume I have mets to the spinal fluid and start treating it this afternoon.

 

The treatment involves getting a spinal tap, drawing out a bit of fluid and then injecting the chemo directly into the spinal fluid.  I will be doing this twice a week.  I have to go off one of my chemo drugs, Avastin, (It can cause bleeding during surgery) for 4 weeks and then they will be able to do a neurosurgery to install a reservoir for delivering the drug directly into my skull.  I’m a little freaked about the surgery, but it certainly sounds better than getting 2 spinal taps a week.

 

So, I am a worn out camper today, and it sounds like the fun is just beginning.  Please keep the prayers and good thoughts coming.  

 

I got in for the spinal tap this afternoon after all.  I LOVE the new radiologist!  His name is Dr Wu and he did both my tap last week and the one today.  I swear the only pain either time was from the local.  I told him thank you last time when it went so well since my previous spinal taps have been nasty, to say the least.  When I was back in today he laughed that he had a lot to live up too today.  The tap today was even faster, first stick and about 10 minutes from start to finish. 

ANYWAY....the fluid should be winging its way to Mayo.  I hope we have results back by Wednesday, but it may take longer.

Thanks for all the good wishes and prayers.  I'm hanging in there