Monday, October 28, 2013

Good News and A New Plan

Holly took me to M.D.Anderson this past week.  We spent two nights, which really made it more like a slumber party since we had more time for meals, hotel room movies, and just hanging out.  I had CT scans, blood work and consented to start the new trial for November 1.  I will have an MRI on my Liver next week as well since the CT scans continue to be inconclusive, but no MRI on the brain.  This is because I am showing no signs of brain metastasis, so my physician waived this test and I will get to start the trial on time.  Woohoo!  This is good news.   Also, my blood work shows that my liver value numbers are stronger.  I will have to travel to Houston every Friday for this trial; scanned every 8 weeks.  Most weeks, we will be able to turn around in a day back to Austin, but sometimes, esp. if a scan is added to my schedule or another test, I will spend one night.  I can hardly believe we are still making the trip, but happy that there are still treatment options for me there and so thankful for all of my black bracelet warriors who are willing to hang in there with me and give John a driving/care taking break when they can.  I know that this is hard and sometimes harder for others. There are always people who have to help them run their lives while they take a break to help me through my life.  Driving and being present by not attending to every call/text just to give me that time and attention is also really a big thing that I know puts their lives on hold on another level.  Thank you for being there for me time and again and thank you for your continued promises to help me until its over.  I love you all so deeply.  Those who can't make it, give in other ways and those ways count as well and touch me in loving ways. I am full of gratitude.

On another note, still dealing with my mouth.  I have had the same spot re-sutured three times.  I go in for a follow up tomorrow and can feel that I might be in for a fourth, which also means those gross shots for a 4th time.  Ugh. 

All else is well.  Love, Peace, Recovery, K

Wednesday, October 16, 2013

Friendship, Energy, Hats, and What's on the Horizon

My Dear Friend, Mary Beth from Tallahassee, FL came to see me this month.  She was my energy healer and became my friend when we lived there through my first experience with eye cancer.  I don't know what I would have done without her those months.....which turned into years.  Her visit was great.  She was here for me during a local chemo visit, we had long deep talks about coping and also which DIY show her husband, Tom (my dissertation professor) and I like the best, energy sessions, and cooking.  Thank you Mary Beth for coming and spending that time with me.

My energy is decreasing and when I lose my breath, it takes longer than anything I could have imagined to catch it.  Jason (my youngest stepson) is here.  He and John are working hard to get OptionHealth (John's latest venture) up and running.  They seem to be working well together.  Jason is helping me with running errands and keeping up with the dogs.  He is fun to have around.  Kelley loves him.  She is too cute wanting to play with him.

Well, as suspected my hair started falling out in large clumps so John shaved it for me. I have some white stubble, but its much easier and less stressful to work with than watching it come out each day.  Time to get ready in the morning has dramatically been reduced!  I put a call out for my Aunt Jo to make me a cap and she sent me 1/2 dozen! They are gorgeous.  One even came from a special group of ladies that she knows called the Knit chicks.  I'm outfitted.  Then, I got a gorgeous hat from my Mimi. My dad called the other day to say he was at the Post Office sending another one that Mimi made, this one with a flower on the side!  CC (my stepmom), her close friend, Lana, my Aunt Darla and my Cousin Kelly have all given me things to wear on my head!  Its too easy.

Yes, I miss my hair.  But, I'm o.k. with this for now.  I'd like to gain about 10# and then would feel stronger.  Working on that.  Jason has some ideas for protein shakes in addition to the Boosts that I've been drinking.  I'm about to change treatments again.  I'll have a scan on 10/25 and then see Dr. Zinner on 10/26. My warrior, Holly is taking me on that trip.  This new treatment is Ocular Melanoma specific (don't know name yet) and as long as my blood work is good and scans are fine, I'll get started sometime soon.  It will be a regular infusion through my port in the outpatient bays EVERY Friday in Houston.  I still like this better than the HAI that was Inpatient.  That was really a doozy.  I think that I need for that treatment to be over. 

Hanging in with teaching.....headed there today.  Love back to all that are sending it my way, keeping sending, I can feel it! In many ways, I feel like I'm declining physically, but for some reason, I know that I have things left to do and that I will get through this battle as well! 

Much love, peace, and healing, K

Wednesday, September 18, 2013

Going Grey...but its falling out anyway, so what up?

So far my appetite is getting stronger.  Still dealing with healing my teeth and getting through months of dental work.  I noticed last night, that my hair is coming in SOLID silver/grey! YIKES, I haven't had any grey yet at 43 so this is not exactly alarming, but well ya know.  One of the 4 chemos that I'm on does say my hair might go grey.  Also, another says I might lose my hair.  Well, this morning clumps of hair started falling out - in the shower, on the counter, in the sink, on the floor, in my brush.  Guess I'm headed to the hair salon to get it cut super short so it will be easier to deal with as it comes out. poo.  I need warm and cute crochet hats Aunt Jo! :-)  She is my grandmother's sister who has made hundreds of caps for new born babies at her local hospital.  I have some nice scarves and bandanas so those will come in handy too :-)

Jason (John's youngest son) is here with us and will stay with us for awhile then get his own place in Austin. We are so happy to have him here. 

This week, we are going to the cemetery to set up my mom's ashes on the bench that will be shared with her husband. 

Next week, I go back down to Houston for cycle 2 of the HAI (Hepatic Arterial Infusion).  John will take me down for that.  All the nurses said that's it much easier after the first time.  I'm hoping they are right!

Mary Beth (energy healer that worked with me through my eye cancer in Tallahassee in 2001 and 2002) is coming for a visit soon.  I'm looking forward to that time together.

CC (stepmom) spent last Friday night with me after my 4 dose (from cycle 1) of chemo, which I get locally (yay!). I got lots of good love and uplifting positive support from her during that slumber party. 

Life is good.  Lots of love all around.  Thank you for that.  It lifts me up and keeps me going from one breath to the next.  I can do this!!

Love, Peace, Healing, K

Monday, September 9, 2013

Corrections and more information

The procedure that I'm having is called "Hepatic Arterial Infusion." I will have this every three weeks as long as my tumors are responding.  Abraxane goes through that artery at a high dose and then dilutes as it enters my main bloodstream.  Two other (to be named drugs are infused into  my port afterward - one at a time) a "booster" chemo to help Abraxane work better and then a type to stop the growth of cancer blood vessels.  Then, a chemo 8 days later here in Austin, called Gemcitabine.  This is not a study or trial, they are blasting me right now trying to save my life - extend my life. 

My appetite is stronger, my fatigue the same and now I can only walk my dogs on certain days in between the infusions, bummer.  Off to teach!

Cheers to the Fall, xo

Sunday, September 1, 2013

Plan D?

Well, good news first - there is another treatment plan available for me.  I can stop the chemo that has kept me sicker than a dog.  As a teen I thought there was no such thing as "too skinny"....revamping my thoughts on that.

Daddy was with me this week as we got the news that my tumor growth is inconclusive; however with the growth of two new small bumps on my scalp and one nearly undetectable bump on my stomach, along with my failing overall health, my team decided that it was time to move on to another treatment. 

I will be getting Hepatic Arterial Perfusion - where they insert a catheter much like a heart catheter, directly into the liver and then will pump high concentrations of chemo (Braxane) into my liver.  At the same time, I'll have a "booster" chemo going into my port to help maximize the effects of the liver directed therapy.  I will be admitted to the hospital for 2 days each time and have the procedure done every 3 weeks.  This first time, John and I are driving down Tuesday and I will be released on Thursday or Friday depending on how I do.

This weekend, I'm a busy bee getting my classes ready since I won't be there and cleaning the house for the dog sitter :-)

Tuesday is my 18th wedding anniversary!   Can't say it will be at the top of my mind that day, but when it pops up, I'll smile and remember what fun we had eloping to Key West that day, where we lived for 2 years after.  In many ways, we left part of our hearts there.  It will always be a special place for us.  Part of my dream is to live long enough to get back there in some way shape or form. 

Cheers to having options and still working with M.D.Anderson, Peace, Love, Healing, Kara

Monday, August 12, 2013

Trial 3 will be the charm I need!

I started taking the drugs for Trial #3 on Friday.  I was sick throughout the weekend, but gradually getting better.  Still dealing with a weak stomach and some fatigue but not as sick as Friday and Saturday. 

I am very hopeful that these drugs will work.  They have worked as independent agents on many other types of cancer - here's hoping that they will work together on Ocular Melanoma tumors!

Off to the oral surgeon later in the week.  It will take many visits to get these chemo/radiation teeth strong again.  I'm grateful for the fundraising money from last year because I'm using it to get my dental work done! Thank you for that!  Even with health insurance and a decent job, healthcare expenses are crazy! I don't know how the uninsured are surviving in this country.  Even with all the help we got last year from people driving me down to Houston and paying for hotel stays, etc., John and I spent over $20,000 out of pocket in 2012 for my healthcare alone.  ARgghhhh, that's a trip to Paris and a few shopping sprees for sure.  Yet, if I'm not here what difference does any of that make?  So, we trudge on and still have hope that we will find something (hoping that we have found something) that will extend my life in a positive way, without too much sickness. 

Still fighting with Blue Cross to pay for the Pazopanib.  M.D. Anderson is giving me (and the others in the trial), the Crizotanib for free.  My new physician thinks we can get this worked out and soon it will be a non-issue.  I'm all for that!

Signing off for now....Peace, Love, Acceptance, K

Tuesday, July 30, 2013

Still Waiting on M.D. Anderson and Blue Cross but continuing on with Life...

My case is now in the appeal process with Blue Cross Blue Shield.  I touch base with M.D. Anderson a couple of times each week to see what's happening.  I think my nudging is moving things along, but you can't really tell.  Its August this week, so its time to get back into the swing of things with school.  I was not really ready to do this until yesterday.  I will be attending a couple of "mini" summer conferences this week and preparing for my fall classes.  I also start all of my dreaded dental work today.  Ugh.....

Not much to report on the healthcare end.  Its HOT here now for sure, 100+ now most days. 

Feeling better most days, which is inspiring and hopeful.  Signing off for now. Peace, K