Friday, May 30, 2014

New Meds All Around

Thank you for those that have called or texted to check on me.  I am as a matter of fact doing okay.  Fell off the grid for a bit, but hopefully getting back on track.  Like the saying "I fell off the wagon, but I'm back on."  That is me.  I didn't see it coming either.  For as high as Don and I still were from the benefit, I really didn't see a bad time coming for awhile, but like cancer is unpredictable, so is my life I guess.

Last week I was to start my new chemo of Avistan and Abraxane.  I knew I needed my fix as my pain was getting worse and worse.  That is the one true sign that I am going by right now to say if the chemo is working since I (with my doctors okay) decided a scan is not something I want to go through at this time.  So I was anxiously awaiting chemo and in the mean time was taking more pain meds than I wish to even discuss just to keep me going.  I ranted a bit about it on Facebook, but because people abuse the use of pain pills, you unfortunately can not have your doctor call you in something any stronger than Norco.  It has to be a paper prescription.  So along with chemo I was anxiously awaiting seeing Dr. Phillips to get a prescription for a stronger pain medication.  When I arrived at chemo on Wednesday, it was taking longer than usual to get my drugs.  Finally Dr. Phillips came to chat  about my pain and prescribed me a stronger pain medication.  This was when I learned that my insurance had declined Avistan as a drug for them to give me.  I was VERY upset and because the pain was so bad, I was not sleeping much so this was not the news I wanted to hear.  The hospital had almost 3 weeks to work with my insurance to get this approved.  Of course no one is going to take blame between the insurance and the hospital and it really didn't matter, all I knew was not getting a drug was not going to help the cancer or pain situation.  I even asked if they could put it on my bill, but that was when I learned that this greedy drug manufacturer was going to charge $18,000 for 1 (ONE) treatment.  I will take back the greedy comment if it works, but this is partially what is wrong with the cancer front….The astronomical amounts that the companies and the doctors can charge when you are 100% at their mercy.  It is just so sad.  Not to mention (again) not being able to get a darn pain medicine over the phone when I have no hair and would have gladly shown the pharmacy, police, FDA, whomever how much pain I was in to show I was not selling, sniffing or putting in someone Else's drink.  Just doesn't make sense and is so unfair given my circumstances.

Okay I'm off  my soap box….So Wednesday I received one drug and was sent on my way.  Whitney graciously agreed to turn in my prescription to Walgreens that I have used for the past 2 years.  We go home and an hour later Walgreens calls and says that they do not carry the number of pills I needed, but that they had contacted another Walgreens in the area and they do.  I say great, so will they fill it?  Nope, you will need to come here to pick up the prescription and provide an ID that matches who is on the prescription and take it to the other location.  I am off my soap box, but just imagine what was going through my mind.  So I do this and take to the next Walgreens only to be told, I must wait their hour to fill the prescription.  Even though they are the same company as the one down the street, even though these are pills and have to be laying around in a locked room I'm assuming, I had to wait the hour….Again I'm breathing when I say I'm off my soap box, but cancer pain doesn't go away while you guys go through your silly formalities.  So off I went for a milkshake and a stop at Walmart.  Why not feed my pain with more pain of going to Walmart….

Home Wednesday night and I start my meds and I'm loving them.  Unfortunately I woke up Thursday and had a very bad chemo hangover and was tired.  I didn't know if I should contribute it to the new chemo, the new pain meds or my levels sinking into the tank.  So I was left to just take medicine and sleep it off.  I woke up Friday and mom had arrived but was feeling about the same.  We were heading to Don and Wendy's lake house that evening for Memorial day weekend.  Of course we left when the rest of Chicago was leaving and I took my pain medicine as scheduled but my pain started increasing rather than going away.  It got so bad and I was so tense that my back cramped up and my toes were stuck curled up.  I was crying hysterically so we turned around.  This scared me so much. I am not a weeny in my opinion.  I feel like I push myself more than some that have not gone through something nearly as close to what I have.  So this was very unusual for me.  Because it was after hours, I paged the Doctor on call.  She advised me to take my original pain meds on top of my new meds and instructed if it was not gone in an hour, I was to go to the ER to get an IV of pain meds and (WAIT FOR IT) a prescription for a new pain medicine since they could not call in something different over the phone.  So I did this and when we got home, Whitney massaged my back to get some of the tension out and eventually I relaxed enough to allow the pain medicine to work.

Saturday Don took the kids up to the lake and Whitney stayed home with me to watch over me since I was scared to death that I was going to over dose with the high amounts of pain meds the on call doctor wanted me to take over the weekend to stay pain free.  Mom and dad had gone to visit their mothers.  The quietness of the house was awesome.  I did hallucinate one time that I recall and to me it is funny, but I would prefer not to do that again.  Sunday was much of the same with relaxation add in a massage which completely helped my back and neck to feel better from being so tense.  I have signed up for monthly massages just for that and to keep me in check.  Something that used to be a luxury item for me has turned into a necessity.

Wednesday of this week I went back to the doctor and saw Dr. Phillips because it was decided with the on call Doctor from Friday night that I needed more of a long acting pain medicine rather than one that I need to take every 4 hours.  So Dr. Phillips and I discussed and she completely agreed.  She also hopes it will take away some of my anxiety.  I do get anxious around the time of re-dosing because the pain is coming back but I try to make the 4 hour mark and not do them earlier.  (I'm such a good patient) So she has put me on a 12 hour pill that I take 2 times a day.  So far it has gone okay.  I'm still needing to take some norco for small amounts of break through pain.  It didn't help that when I went back Wednesday evening for chemo, even though I was not due for medicine, after leaving chemo I had a pain attack just like last Friday.  Completely tense, couldn't find anything to help relieve my pain. So why they happen every so often can't be explained.  I don't like that because I feel like I'm on guard at all times and scared it will happen again.  I did receive both chemos on Thursday as the insurance decided it was necessary to cover the drug.  (Applause)  So far I feel good.  I'm tired, but that again could be due to the pain meds, my low red blood cells (Dr. orders that I will need a transfusion probably by next week) or the chemo.  All I know is I am getting the best help around here with dad and Whitney.  My laundry is done, the kitchen is kept clean, dinners are prepared and the kids are shuttled around.  I feel silly, but if it helps me regain my energy and have good times with the kids, that is what is important.  When they move out and get jobs, I may be in trouble because I may forget how to do all of these things:)  But they are awesome!

Please pray that this new chemo is doing its thing.  Pray that my pain medicine will finally work to keep me out of pain.  Pray that dad and Whitney find work.  For dad so mom can get up here as we all miss her so much.  For Whitney so she can begin her life as a big girl.  Both have things in the works so I think your previous prayers and future prayers will get them to where they need to be!  Oh and prayers that the house next door or across the street goes up for sale so my parents can buy it…..Kidding totally kidding!  They will find something close so they are there when we need them.  Just like Don and Wendy.

Love to all!  Have a great weekend.


Friday, May 16, 2014

Home Sweet Home

Well, it is official, Whitney Garrison has graduated from University of North Carolina Asheville.  We had a great weekend away in the mountains and seeing some good spots in Asheville before Whitney moved.  Don came home on Sunday morning and I stayed another day to celebrate mothers day with my mom and drive the moving truck with Whitney's stuff back up on Monday with dad.  Dad and I made the most of the 10 hour drive home.  I can not complain about the drive one bit.  Although I did not drive so he may see things differently.   I was able to get a couple naps in and make a pit stop in Columbus IN to see my Uncle Rich and aunt Tam's "new" house.  They have lived there for 6 years so I guess what may not be new to them, but new to me.  Beautiful home on the lake.  They surprised dad and I with a baby!  Yes, a baby….my cousin Jill was there with her daughter Quinn who is 2 months.  Beautiful surprise!  It was sad to learn at the benefit that my aunt Tam's father was diagnosed with cancer.  We received an update on him and it seems he is handling his chemo like a champ!  So good to hear.  Cancer at any age does not come welcoming. So do me a favor and please add my aunt Tam, her father and her family to your prayers.

While away, Don and I learned that his Uncle Ron passed away.  This was sad news to learn because we just saw him at the benefit volunteering.  He has 3 grown children and 4 grandchildren.  His services were held Tuesday and Wednesday.  It was a beautiful service. So another prayer request for the Pondelicek family.  Especially Ronnie Jr and Kathy, Brian, Trish, Sean and Molly and Adam, Kristi, Jeremy and Zoey. And also Uncle Ron's brothers and sisters and mom. 

On the cancer front, this is my off week.  Last week I received my chemo but also spoke to Dr. Phillips.  I could tell my nagging pain was coming back in between my regular pain pill time.  It was becoming worse and worse and I was also noticing some new red spots on my chest wall.  This told me that the chemo I currently am on was probably no longer working.  So I made the brave decision to call out the cancer this time rather than it calling me out.  What I mean by that is I was scheduled to have a repeat PET scan to see if this drug was working before moving on.  But after the uplifting benefit, I decided I was not going to let a chemo regimen that decided to fail bring me down by getting a scan and learning of a possible new location that the cancer had set up shop.  Rather I asked Dr. Phillips if we could just move on without a scan.  See my chemo treatment does not change whether the cancer stays put or travels to an organ or new nodes so my new opinion is, what I don't know can't hurt me.  I know to some this sounds like a small victory, but for me, it was huge.  Hearing we have to move on makes you feel like things are out of your control.  For me to make the decision and basically come to terms with it rather than being told by someone else, is my small way to feel in control and to feel in control to me meant not losing any of my high from the weekend of the benefit.  So there you go!  I also feel that sometimes knowing or hearing something makes me anxious and that feeling is hard to shake.  For example, when I fell playing soccer a few weeks back, I fell on my hip that has a spot that has not been ruled as cancer but has also not been ruled out.  So I limped for a week and told myself that this was it, it probably is the cancer blah blah blah.  Well, a week later, my hip does not hurt and I am not limping.  See?  See what a scan does to me?  I just would rather not know right now since my treatment plan stays the same.  

So new chemo starts next Wednesday.  I will be doing 2 drugs for 3 weeks and the 4th week off.  Week 1 I receive both drugs.  Week 2 I receive 1 drug and week 3 I receive both drugs again and week 4 is a week of rest.  I am told I should be able to tolerate these drugs about the same as the other drugs.  No new side effects that seem too scary for me.  The drugs are called Avistan and Abraxane.  

So wish us luck!  Have a great weekend!


Tuesday, May 6, 2014

Cancer Can Kiss It

I have been thinking a lot of what I want to say about the wonderful benefit and I still feel like I am at a loss for words.  It was so overwhelming (in a great way) and there are so many beautiful faces that were behind it that I just don't know that my words in my blog could describe how Don and I feel.  I can not say enough how much our friends and family that put this together mean to us. We knew they cared deeply about us, but what they put together (again very little experience in this field) was amazing!  We will never forget this day!  And to those of you that attended (746 people was the final count I'm told) we thank you so much. We know the band and the atmosphere was awesome, but you came for us.  You came because some how somewhere you have heard our story and wanted to show support.  My God!!!!!  We love you all!  And the generous donations we received was out of this world!  So generous and so genuine.  We can't wait to pay it forward and we already have some things in the works.  

I did not get much time with any one particular person on Sunday, it was so busy, so I apologize if we didn't speak or if our conversation was cut short.  I told Dan and Joe (The master minds behind the benefit) that I felt like I was a Kardashian or something.  I even talked to people through the stalls in the bathroom!  It was a great problem to have so I am not complaining and I know you all understand if we didn't get much time together.  We are still on such a high from the event.

Please stay in touch with us as we continue our journey.  The benefit has given us the strength and the courage to keep reaching.  We are not at the end of any roads and we feel like we now can not see any end.  This is because on Sunday there was such a feeling of love and of God in the room.   I know I am not healed, but I do know that I have at least 746 people praying and pulling for me.  And I know more, because several have reached out to me that could not make it.  Several have sent cards of encouragement.  We feel it, and the Lord works in mysterious ways and I do not think he is done with me here!  

Chemo tomorrow before Don and I leave Thursday night to see Whitney graduate from the University of North Carolina Asheville.  We can not wait to hear her named call.  She is our angel on earth.  She gave up a semester at school and put her social life on hold to take care of us and our children when I was first diagnosed.  I know the saying, you will do anything for family, but this was a courageous thing for a young women to do when we all know how important college is but also how important our social lives are when you are in college.  I hope and pray that she gets the best job she could dream of.  She deserves only the best!  She is beyond amazing!  

I have included a video of my speech from Sunday since there was a lot of my family that could not attend because of the distance.  So I hope it will download and you can enjoy it.  If you can't, I will try to find a way to get it to you. 

We love you all!  Keep up the prayers and the support!

Please go to the following address to view the speech: