Lucky Girly!!!!!

So, this week has been pretty tough for me. I have had some really great days, but I have had some really bad days as well. Just trying to process all of this is overwhelming. I'm giving it all I have, but sometimes it just takes a little while.

When I forget how lucky I am, it seems that there is someone making me smile!!! I got a call, just minutes ago from my mom and she directed me to a website for the John Hancock Show and I hurried to check it out. He's a local radio personality and great friends with The Avett Brothers. There is audio of an interview he did with Scott Avett just before they opened the show for The Dave Matthews Band at Verizon Wireless Ampetheatre in Charlotte. Not only did they mention my t-shirts, but there is a link to my blog on John Hancock's home page. Talk about exciting!!! The amount of support and love that comes my way on a daily basis is awesome. Thank you ALL!

Make sure you continue to check out The Avett Brothers music and go see them when they come to your town. They are really great friends and already have done more for me than I can ever express in words!

Thanks once again to John Hancock and Dolph Ramseur for showing their support! And welcome to anyone new who found this through their outreach!!! I am honored!!!

Love and Gratitude,
Tara

Tara shirts and Tara stickers

Hey, what do you know....this image was spotted on http://theavettbrothers.com

It's so cool to feel the support! I thank everyone who has bought t-shirts thus far and as I have said before, it's not too late.... Because there is no clinical trial at this time that will help my situation, I think I have come up with a very worthy place to put the money. I will reveal my plans as they become more concrete.

The other fun thing is hearing the stories of TARA sticker sightings. The best part is....they all seem to see the same car. Mitch and Laurie Agnew are rocking that sticker on their black Element all over the state. 4 sightings so far. If you have a minute, snap a photo of your TARA sticker and send it to me @ ikickcancersass@gmail.com I'll stick your photos up here....same with your t-shirts.

Love and Gratitude!
Tara

a little info....

Doug Engstrom 2001

I will start with the T-shirts:
Those girly shirts are FAR too small. So, if you got one and it doesn't fit, let us know and we will make it right. Any shirts ordered from now on will only be in the men's sizes. You can continue to get in touch with Gus on that front: eengstrom@carolina.rr.com You can look back at the blog archives for a photo of the shirt. It's pretty cool....Although no longer fully true. I can't have my scooters anymore. But, it was a fact at the time.

Next, our friend, Dolph Ramseur, manager of The Avett Brothers sent out an email today that made my heart soar. It is so nice to have such great friends. I am going to copy the email here for any of you who weren't on the list:

>>>>>

April 18th was National Record Store Day and The Avett Brothers stopped by Grimey’s in Nashville, TN to perform a few songs and sign some autographs. Grimey’s is one of the best record stores in America and have always given The Avett Brothers a lot of support in the Music City. Over 1,000 people turned out to catch the Brothers sing a few songs. A few climbed trees and many climbed fences to join in on the celebration. At 2:22 of this video (link provided below) you will see the crowd helping the guys out. Pretty impressive.

http://www.youtube.com/watch?v=b3-kGwYvigc

You will notice Scott Avett wearing a Tara Engstrom Has A Posse And I’m In It t-shirt while performing at Grimey’s. Tara is great friends with The Avett Brothers. She is putting up a great fight against breast cancer and is a huge inspiration to many. The Brothers were very honored to play a private party in February for Tara, her friends and family. It was a very special night and something that will never be forgotten. For more information on Tara and her battle against the big C please visit her blog at: http://illkickcancersass.blogspot.com/ To order a shirt please contact her brother - Gus Engstrom at: eengstrom@carolina.rr.com
Yours In Truth,
Dolph

<<<<<

Please go to www.theavettbrothers.com and buy their music. Available on their website, on itunes, various online retailers or your local record store. In addition, go check out Amy's pictures of the pep rally one more time and from there go to the flickr page to see all photos: 627photography.blogspot.com

http://www.flickr.com/photos/amyhill627/sets/72157614351654861/

Thanks once again for reading and I will update as soon as there is something to tell you. I did fall down the stairs last night, that was NOT fun. But other than having a bruised butt and needing my cane again, I think I will be okay!!!!

The photo attached is one of my favorites of my uncle Doug and I thought anyone who knows him and reads this blog would appreciate it!!!

love and gratitude,
Tara

A long overdue update

I would like to start by apologizing for my being remiss in keeping everyone updated.  It has been a very long and interesting month for me.  

I will first update everyone on the most important thing that has happened in my life this year.  My dear uncle Doug lost his battle with cancer on April 3.  I was in Kansas for 2 weeks spending some time with him and our family.  It was a wonderful thing to do my small part to help him pass from this world.  He was (despite the fact that I am biased) an amazing man who touched many lives in his far too short life.  He is missed by all who knew him and I am thankful that I got to be related to him and know him my whole life.  Thanks to everyone who helped us with the 1000 cranes.  We got them strung and showed him.  He was able to make a wish and we feel pretty sure he got what he was hoping for!

I probably wore myself out a bit in Kansas.  I didn't take my naps and I was very preoccupied with my family time.  So, I came home a very tired girl.  I had my follow-up appointment with Dr. Steffens on Monday of this last week.  It went well and we discussed my options.  1) do nothing  2)continue to do the lupron (which had obviously stopped working) 3)chemotherapy: which has nothing to back it up in the research department as to it's effectiveness for bone mets in my femur or 4)begin a regimen of Lupron every 85 days, Faslodex and Zometa once every month.  We decided to go with option 4.  

I had a PET scan on Thursday and had a call on Friday that Dr. Steffens wanted to see me Friday.  I was sure it was just because he missed me.  (it has to be tough to go a whole week without me! :)  It turned out that the pet scan showed some activity in one lymph node in my abdomen.  It was somewhere close to 2 cm large.  I really hated getting that news.  I wasn't really sure how it would change the treatment plan we had decided on.  Dr. Steffens made the point that it is only one lymph node out of all of the lymph nodes in my entire body.  I responded with the fact that one lymph node was how this all got out of hand starting in 2000.  He understood my concern.  It is his opinion that we have time on our side, for right now.  He would still recommend that I go to the Faslodex and the Zometa, along with the Lupron for now. We will rescan in 8 weeks and if necessary, we will take another look at the chemo option.  There will (positively) be no growth that could change my prognosis in those 8 weeks.  As I have said before, he is my doctor, I chose him, I trust him and I am going to go with this.  As a matter of fact, we started yesterday and I received my 2 shots of Faslodex in my hips and my infusion of Zometa before I left yesterday.  There are no side effects (other than a sore-ish butt) from the shots and I have taken Zometa before and never had a problem.  

I am remaining hopeful for the time being.  I am scared, I am sad, I am angry, I am frustrated and most of all I am weary.  This is just about a sucky as it gets.  I'm tired of this being my lot in life.  I have been so wrapped up that I forgot my (stem cell transplant) birthday on the 12th and keep thinking of the fact that April 20 will be the 9 year anniversary of my very first diagnosis.  It has been a long 9 years.  BUT....I will fight to stay alive for every bit of time I am given.  

It is very late and I am tired, so I think I will end this post for now.  I will pop on a photo of the tattoo that I am going to get, very soon.

Thanks once again, for caring enough to read my drivel!  Keep you vibes / prayers coming as I am sure I need them!

Love and gratitude, 

Tara

Gus here...

Well just letting everyone know that Tara is NOW finished with her radiation treatment. She finished yesterday and left for Kansas for a while. Our Uncle Doug is not doing well and she went to be with our dad out in Junction City. I know she is grateful for all your good vibes and thoughts during her treatment. I want to thank everyone who has bought shirts! WE really appreciate it. The most recent order has been picked up from Contagious Graphics and are being delivered (or sent) by tomorrow. Like we have stated earlier, these are being made to order. If you want one, it's not too late! The shirts are $20. We have a Paypal address now to purchase shirts. It is : made.in.kansas@gmail.com If you pay this way, throw in a few bucks for shipping. Let me know if you want to buy one or have any questions. My address is eengstrom@carolina.rr.com

Thanks again for all your love and support.

Gus

Yep, still tired

9 more treatments to go!  WHOO HOOO!!  As I said in the last post, I can tell a big difference in my leg!  The pain is almost gone.  It's so weird to not have that pain.  It's been with me for 4 months and I guess I thought I would always have it.  

Gus, Caleb, Glenda and Amy did some serious work on my house this weekend.  I suffer from hoarder disorder and Gus is great at purging!  They all went through stuff, cleaned and separated trash from things for the big yard sale I am going to have when I feel up to it.  

In related news, Amy moved in and that has been nice, as well.  I think it's going to be a perfect fit.

OK...now for news about treatment.  I spoke with Dr. Steffens' nurse today.  I was trying to get a handle on what is going to happen after radiation.  She said that the research team was looking, but having a little trouble finding a clinical trial for me.  Once I finish radiation there will be no "measurable" disease.  This doesn't mean it will be gone, it means it will be invisible to scans.  So, without "measurable" disease, I don't qualify for most clinical trials.  That was a real bummer for me.  I am not going on to do chemo.  He is going to put me on a drug called Faslodex.  It is a hormone treatment.  It will be a once a month shot.  If I'm honest, this doesn't feel like enough.  One of the things the nurse said on the phone was, "you know you're in good hands?."  I do.  I trust Dr. Steffens.  I don't think he's not doing all that can be done, I think the situation just sucks all the way around.  That first meeting with him last month, he did say that it would be a case of trying to "control" because there wasn't much that could be done.  So, let's all just keep hoping for that miracle.  I am not going to give up!

One thing I'm doing is folding 1,000 origami cranes.  Japanese legend has it that if you fold 1000 origami cranes, you get a wish from the crane.  Long life, cure for illness, etc.  I'm going to cover all my bases and do just that.  I am folding 10 cranes per day.  I have completed 60 and I will finish June 14.  Wish me luck.  And I have started a facebook group for my uncle Doug.  I know he's not going to fold 1000 cranes, but I think if everyone pitches in, we can do it together and get him that wish from the crane.  If anyone not on facebook would like to pledge a few cranes for Doug, let me know.  

Well, until next time!!!

Love and gratitude!

Tara

I'm still tired, but feeling less pain

Radiation is just exhausting.  It seems so easy.  Go in 5 days a week, lay on a table for 15 minutes, go home.  But getting the power of 1000 suns in both the femur and the rib is like getting the power of 2000 suns.  That's lots of radiation!  :)  I guess the radiation is doing it's job.  The pain in my leg has lessened quite considerably.  I am walking with a cane (a cane that has a horn on it :) ) and will continue to do so.  My femur is quite compromised because of the tumor and I will use the cane for safety.  

In other news, I am getting a roommate.  My friend, Amy Joiner is going to move in and live downstairs.  It's a win win.  I need help keeping up with my house and with Margot and Amy gets to live away from home for a little while.  It's going to be great!  I haven't had a roommate in a long time and generally love living alone, but I really do need the help.  And, she's a cool girl.  So, here's to fun times on Sunset Dr.

Well, I left Margot outside to get some air and she is barking like crazy.  I am going to get her and see if we can't take a nap!

Much love, 

Tara