Hard 2 Love Hard 2 Love.....

Who has heard that country song...'Hard 2 Love", by Lee Brice? It's great. It made me think of Chemo though. lol
It's hard 2 love hard 2 love the side effects, but I might like that its' good for me in ONE way. To shrink the lesions on my lungs.
In the mean time, It's hard to love cotton mouth, Hard to love cold sensitivity, Hard to love fatigue, Hard to love carrying around a fanny pack of med's for 46 hours after infusion. Hard to love not being able to drink or eat cold things. Hard to love nausea.
But it's easy to love the hope that it is helping me in the long run. though a person can only take so much of this particular medicine in a lifetime, so eventually there will have to be something else that works for me, or doesn't. Preferably works!!!
I am going to stay as strong as I can, physically in order to keep up with the regimen, and emotionally to keep up with my family, or help keep them up!

Vacation post, post vacation

Saturday, August 18, 2012

Well, it’s been an amazing two weeks! We came down to Austin, Texas to vacation in New Braunfels at the Worldmark resort there. My older brother, Dan, and his family came down to spend a few days with us. During that first few days, my younger brother, Jeremy, and his family (bigger by two all of a sudden) drove to New Braunfels while we were there and spent time with us. It was great to all be together and catch up with the spouses, and all the nieces and nephews. Until now there were only two nieces, Kaili and Jana, now there are three. Kaili, Jana, and Lucy now known to us as Sophie. As for the nephews, there was Alex, Jeffrey, Tyler, Damon and now add to that mix, Justin, now known as Ryder. Unfortunately Kaili was unable to be with us. We got lots of great pictures, and had fun together. We went to Schlitterbahn, swimming at the resort, out to dinner, toured Historic Gruene, Texas, and one night went to Gruene Hall to listen to the music. We went to San Antonio to see the Alamo and do the River Walk….which turned out to be a very hot thing to do that day.

I am in love with Gruene, Texas and Gruene Hall! I could go there several times a week and just listen to the music and practice my two step. 

I am sad for our time here to end. It means saying goodbye to family, goodbye to the sun. It means getting back to reality, the reality that is mine almost constantly these days. I have to return to Chemo. Round 3. I am not looking forward to it. I have to go back on the medication that causes neuropathy. I don’t think the outcome could be good as I still have neuropathy from round 1 which ended almost 2 yrs ago. When I say that though I think I should just shut up and count my blessings that I have a “2 yrs ago” to even talk about. Amen to that. There is a new medicine coming out , hopefully to be approved by the FDA by November. I will be in line to try that one out. Of course it comes with it’s own share of side effects, but some are more tolerable than others.

For now I am savoring the time I just spent in Texas! We spent the last two days at Jeremy and Kristin’s home. It was amazing to see family, the sun, relax, and renew bonds. 

Thawing

                                        My sweet nephew, wanting to drive my rental. The 'stang

                                                 Dessert before lunch. Joe's Crab Shack
                                                                           Kemah, Tx

                                                                 Me and Jeremy
                                                                    Kemah, Tx

                                                        My Texas boyfriend, Phineas

                                                                   Tyler, cooling off

Well, it's been tiring but good to be here for a quick visit and medical appointments. My brother, Jeremy and I drove to Houston twice this week to see the doctor at MD Anderson. The rest of the time I am just relaxing and enjoying with my nephew, brother and sister-in-law, Kristin. It's been real hot here...but that is okay. I realize the heat gets real old to those living here and I am sure it would to me too if i lived here, but I just came to thaw out a bit.
I am definitely thawing...fast.
Right now my Texas boyfriend is laying across my arm and I am having trouble typing, but he is such a cuddler and love.
I leave tomorrow night and return Sunday for a 2 week vacation. We will be in New Bruenfels. I am looking forward to it for numerous reasons, a few of which are that my older brother and his family are coming down from Iowa to share some time with us at the Worldmark resort, and so all three of us and our families will be together for a few days. We plan to hit Schlitterban, the world famous water park, as well as SeaWorld and whatever else we feel inclined to do. There will also be some relaxing and visiting going on. Just what I need!!! And John also!!! Maybe he more than me. I will be returning to treatment when we return to Alaska and he does so much for me anyway, but even more when I am going through Chemo. He needs a chance to warm up and feel the sun on his face and shoulders.
He will!

Here I go

Well, I head out Sunday for Texas. I have an appointment at MD Anderson on Monday the 30th. My brother Jeremy will be accompanying me. We will drive from Austin to Houston for a 12 noon appt to register. Meet with my Doctor at 1, bloodwork at 2, and a CT scan at 8pm that night. We haven't yet discussed whether we will drive back that night or not, though I am sure we will. That's a long day for anyone, but it looms longer for me given the changes in my diet. I won't be able to juice that day, hopefully I will be able to find a Jamba Juice!
During my visit with the Doc we will schedule a follow up for later that same week. I leave to come back home on Friday night and on Sunday, we leave as a family for vacation....to Texas. lol
Just can't get enough sun.
I am excited and nervous.
It's been a long time since my last scan when things were growing. I am nervous to find out what's been happening. My biggest fear is that it will have spread. That's what we have been trying so hard to avoid!
I am trying to focus on getting sun, seeing my brother, sister-in-law, and nephew.
I am excited to find out if MD Anderson has some options for me that will be supremely more benificial that what I have been getting here.
Going away is so much hard work.
There is laundry,
Packing,
Organizing home,
Planning meals for those staying behind,
Making sure dogs are taken care of,
bills to pay up on,
getting time with everyone before I go.
There is more I am sure I am leaving out.
Needless to say it's a busy week for me.
So I am off to ride bike with Damon and AVa before coming back to tackle more household chores.
I will do my best to keep writing and keep you up to date as to what is going on in Texas, besides the obvious....."the sun is shining and I am swimming"
lol

not lovin' life...just saying

See? I just tried publishing this without even writing anything!!!! Any other day that might be funny. Tonight? not so much.
Nothing is really funny, and as the evening wears on, I'm less and less amused.
I'm more and more scared.
I'm less and less interested.
I'm more and more determined.
I'm less and less confident.
I'm more and more sad.
I'm less and less happy.
I'm more and more sure.
I'm less heard.
I'm more annoyed.
I'm am just plain disheartened.
I used to have dreams. I used to have wishes. I used to be independent. I used to be active and healthy. I used to....
used to...
used to....

I need to get to;
I am,
I do,
I will,
I can,
I am sure!

Down and out

Down and out....It's how I feel today. Or at least, Down and almost out. I am not so out that I didn't do anything, but wishing I was out so I didn't have to do anything. Making any sense  yet?
Sorry.
I have submitted my records to MD Anderson and am still waiting to hear from them with an appointment date and time for me. It seems there have been delays at every level lately. Honestly, is patience really a virtue I need to be learning right now? Is this really the best time for this? I really think we could take this lesson and insert it somewhere else in my life at another time...like when I am dealing with my son, or my husband, or my dogs, but while waiting for an appointment to talk to a Doctor about my Cancer and what options might be out there to SAVE my life...? Really? This is when I need to be learning about patience? I completely disagree.
(and now this will be when I have to wait even longer because of what I just said.)....lol
But really, I think there is a better lesson to be learned here. Like good eating habits. Saying my prayers more consistently. Serving others more often. Exercising more faithfully. Appreciating hair only 1/4 of an inch long. You understand what I am getting at right?? Thank you!!!
I mean, I am only talking about my life. No big deal. Only it IS a big deal.
In the meantime, I also feel down, not just out. Like, I am just waiting for this appt and everything else in my life is just hanging out. There aren't any dreams being pursued, there is no one (or more) thing(s) I have to get done each day. I have nowhere to go at night. No dates. No girls nights out. No family business to run. I raise Damon and Play with Ava, and those are BIG things, I know that. but some might get what I mean when I say I feel like my life has no purpose right now. I'm just waiting around on this cancer. I know that's the wrong thing, but I don't know how to motivate to do anything else right now. I used to be such a go getter.
So, before I get you all down too...I will stop.
thank you for being the faithful readers you are. I appreciate that.
Love,
Danielle

going's on...

I keep resolving to do better about blogging and then things interfere and I stop for awhile. So much has happened since I wrote last.
My dad came for a two week visit and it was great seeing him, spending time with him, and doing things together.
I spent days trying to get in contact with my provider at JBER to get my referral for a second opinion rewritten so it could be authorized for me to go to MD Anderson. When I finally spoke with someone, they informed me my provider was out until the following week and no other provider would be able to write the referral. After that call I spoke with John. He got in contact with someone in Kodiak, who got in touch with someone else and they wrote my referral, submitted it to Tricare and within 2 days I had authorization to go to MD Anderson.
After that I gathered all my records that they requested and faxed them down. They are now being reviewed. Once they are finished reviewing my records, they will call me to schedule an appt.
Once the appt. is scheduled, we submit the authorization and appt. date and time for travel. Hopefully the Coast Guard will cover my travel and rental car. that will be  a huge blessing. I also hope that my appt. isn't too far down the road.
We have a trip planned for the beginning of August and I want to be back from my appt. before we go on that trip. If I need to be seen again while I am down there on vacation, then that is ok with me.
I am so looking forward to going there and finding out if there is more that can be done for me. My biggest fear is that they will tell me they can't do anything more than what my doc up here is doing. that will be a huge disappointment and create a great sense of loss for me and my family.
I am armed with questions to ask! While my dad was here we sat down as a family and came up with a list of questions. I am not going to go all the way down there and then forget to ask something important.
In the mean time I have been trying to drink as much juice as I can, and eat salads, and fresh produce. In Alaska it's sometimes difficult.
I am still loving the carrot juice the best. I did find though that if I add pineapple to the green juice it helps a lot with the taste.
I am very proud of my daughter, she started drinking smoothies and even asked me to show her how to make them herself so when I am busy and she wants one, she can make it. This is a GREAT help. Not to mention a great healthy choice for her. good job Kaili!!!!
Juice is next on the list to try. We need an alternative to apples in the juices though as Kaili is allergic to apples.
ideas?.....are welcome.
We had to go back to the vet yesterday with Bode, the 1 yr old german shepherd....turns out he has a bad yeast infection in his ear. mmmm no wonder it hurt so bad.
Well, I hear my little man crying in bed.
thanks for reading.
Dani