Long time no post...

Well I did it again, I said I wouldn't go so long without posting but I did. A quick update: my ct scan was good a couple weeks ago. They said the tumors shrunk about 17% from the first two cycles of the study. My pain is getting a little better, I've started using Fentanyl patches instead of so many pain pills. I still take a few but I've been able to cut back even more. I'm on my week off between cycles 3 and 4. Round 3 was better than 2 and 1 but I am hoping 4 will be better. Other than being tired and having some pain in my neck I am feeling pretty good this week. Like I said last time I had to get shots to boost my white count, now I am just getting two shots instead of 5, but my hemoglobin is down really low so I had to get a Procrit shot to raise that. That will also be a regular occurence unless I can get my counts up in that too.

On another subject, I'm sure most of you know I love clothes! When I'm having a really bad day with all this cancer garbage I head out shopping for some retail therapy, even if I just look. Well, my new favorite store has opened in Grand Island. You might have seen it in the paper when they did a feature on it. Stefani's Closet Boutique is my new favorite place to go. It's by Whiskey Creek and Meyers Jewelry right in the parking lot by the China Buffet and Kmart. She has a lot of really cool shirts, jeans ,purses, jewelry, coats and lots of other awesome stuff. It's stuff you don't see anywhere else, I love stopping in after chemo to see what's new. Apparently my Hope Angels even know I like to shop there. They must have flown by and picked up a gift certificate this week. Thank you so much, you guys keep my spirits up! This weekend on Friday and Saturday is the grand opening, and if you buy a purse/handbag you get a free wallet. Just had to share that, hope you can check it out!

Hope you all have a good weekend! It seems like I hardly see anybody anymore because I'm sleeping half my life. I don't start cycle 4 until next Friday so hopefully I have a good week until then. Thanks for checking in, Heather.

Feeling better and a green smoothie

I finished my second week of treatments and now I am on my week off. I did much better the second time around, my neck didn't swell quite as much and I didn't get hardly any chest pain. My white count was way down to 2 so I have to get 5 days of Neupogen shots to boost it back up. My last one is today, I'd start cheering but I think this is going to be a regular occurence. The Gemzar chemo drug is known for dropping white counts. I have also been able to cut back a little on pain pills. I'm still taking a lot but at least it's not as many. I do think the pain is getting better from the chemo, I think it's shrinking the tumors and easing up on those areas where I had such severe pain.

Okay, now for the fun news. I got a new recipe from the rawbodytwins.com for a Green Citrus Smoothie. It is really good and doesn't even taste green. You can just taste the citrus. As many of you know when all this pain got so intense in late July I dropped off the raw bandwagon and just started eating comfort food. I finally, after two months of eating junk, decided to get back on the whole food/raw eating way. I have only been back on for 5 days but I already feel so much better and clearer mentally. I can't really say about the energy because with my white count down so low I don't have any energy whatsoever. I pretty much sleep all night, then go back to bed after the kids leave and sleep for another 2-3 hours.

Anyway, here is the recipe. It makes a double batch so I just drink one and then I have tomorrows already done in the fridge, just grab it and go. It would be a great and filling breakfast for those of you going to work in the morning.

Green Citrus Smoothie (by the raw body twins)

1 banana
2 peeled oranges
3 handfuls of spinach leaves
1/2 cup of pineapple
about 1 1/2 cups of cold water.

Blend all of that until it is a smooth liquid. Then add 2 handfulls of ice cubes and blend it again to make it colder. I use quart jars and plastic lids (from Walmart). So of course I added a picture. Hope you try it and I'd love to hear comments if you like it. It works the best if you have a good blender so it gets really smooth.

Well, I better get ready to go get my shot again. Have a great day! Heather.

More pics with the new camera...

As if I weren't far enough behind in scrapbooking right now, I took some more pictures of the kids last night. Tanner was dove hunting with Matt so he didn't get any again. Anyway, someone called last night and wanted to buy a lens of mine so I had to go out to the studio to look for it. Also, Canon 20D still for sale with 28-80 lens, fits all Canon lenses film and digital.

While we were waiting, we took a bunch of pictures with the new 5D mark ii. I love it! It is super sharp. The kids were starting to do goofy stuff so we quit. Ellie wanted her picture taken with the number 5 that I haven't used since I first started. Cauy put on the cowboy hat and the girls put on the pettiskirts and we ended up with a lot of goofy pictures. I prefer black and white close ups but kids always like props.

I go back tomorrow for my second week of chemo. Tomorrow, (Friday) I will get Gemzar, Carboplatin and the study drug. I hope this time goes better and I don't get the chest pain. The boys have football bright and early Saturday morning so I hope I feel good. I don't know how long it will be before we do some sort of a scan to find out how it's working, I suppose at least a month or so to give it some time. I actually think the pain is getting better. I'm still taking the pain pills but the breakthrough pain is minimal.

Have a good weekend! Heather.

Hooked up and ready to go!

Well it's Friday and I am hooked up to my chemo pump yet once again. This time is going to be the one that makes a big difference! I am officially starting the BiPar trial today. The clincial trial nurse randomized me yesterday and I drew the inhibitor experimental drug. Only half the people on this trial get it and I got it! This clinical trial is going to be in 66 sites in the United States and Grand Island (Saint Francis Medical Center Cancer Treatment Center) is the only site in Nebraska to receive it. Dr. C and his team pushed hard to try and get it here because there are several of us who are case specific (triple negative metastatic stage 4 bc) and they believe it's going to do great things. The study in earlier testing showed that women with this specific case had longer overall and progression-free survival when treataed with the inhibitor plus the two chemotherapy drugs Gemzar and Carboplatin.
We are so lucky this has come along. I feel very confident that it is going to shrink the tumors I have and keep them at bay for a long time! I am starting this trial as I approach my year anniversary of my recurrence, which by coincidence in the article Dr. C brought me to read about the study says; approximately 15% of all breast cancers are triple negative, of those 30% will develop metastases and of those the survival rate is about 13 months after development of the metastases. However, they think it's more like 3 years here. But in other words, I am really hoping this works.

Also, on a completely different subject, I did get a new camera body. Even though I'm not really working, I still enjoy taking pictures of our kids and wildlife/nature ect..., and the occasional session for a niece/nephew or friends' senior, as I did in August. I just snapped a few pics of the kids as they were waiting for the bus the other day. I haven't gotten to use it much yet but am hoping to take some pictures of some flowers and nature this weekend to try it out. By the way, I am selling my Canon 20D body with 18-55mm lens if anyone is interested. It takes awesome pictures. It would be a great camera for someone who has a Canon film camera with interchangeable lenses as they will work with this digital body. Let me know if you're interested, asking 450.

Have a great weekend! Heather.

New news...

I had a neck Ct yesterday and it showed two main tumors in my neck that have doubled in size since my last scan. That's not such great news but I am starting chemo on Monday so hopefully we'll shrink them back down right away. I should know by the end of the week if I get the inhibitor experimental drug or not. The other bigger tumor is in my chest and it's 4cm by 2 cm. They are getting great results already from the other two women on the trial in GI. This could be it!

We had a great time in Colorado. I am going to put a couple pics on from the trip. It was so beautiful there, I'm ready to go back.

Hope everyone is doing well, have a great week! Heather.

Been a long time!

Sorry it's been so long since I've updated on here. It's been a rough 6 weeks. I've since had two epidural steroid injections. I'm hoping this second one will start to help. The neck pain had started to get better but the pain in my wrist and thumb has gotten worse. I'm taking so much pain medication that the morphene pain pump is next on the agenda I believe. I was hoping to get by for a while without it but I don't think I can do it.

The run went great, we had about 59 people come and run/walk. Thanks so much to everyone who came and to the sponsors for helping out with the shirts and medals. I wish I could have run in it but it just wasn't going to happen this time. I've kind of let my exercise and nutrition go out the window since this pain got so bad. I'm going to turn it around though, I am starting back on eating healthy again (all whole plant foods) after labor day.

Since my last post my tumor markers have kind of gone wild. They were in the 70's back in May, then jumped to 141 in June, down to 136 in July, now in August they are a whopping 327. You can't put a ton of stock in the tumor markers for most people but for me they have been pretty true to what's going on with my case since my recurrence last September. Speaking of which it's almost a year since that happened.

We did two weeks of radiation to try and shrink the tumor on my c6 nerve. However, my throat got so sore and I developed thrush in that time, I could hardly even drink water, we decided to quit. I will be starting on the BS101 Triple Negative Metastatic BC trial next week. Depending on whether I get the inhibitor or not, I may have chemo twice a week for two weeks and then a week off. I am hoping this will be the ticket because I am really getting tired of feeling crappy all the time and having so much pain. It's not me!

I haven't been working except I did get to take three close friends daughters' senior pictures. It made me feel so good to be able to do what I love and create some special images for them. I did have to split up the sessions and just do little sessions at a time because I get so tired and my arm and wrist get so sore, but it was worth it.

I'm in Estes Park right now with my parents and Sage and Ellie. They invited us out here for the weekend to relax and get away for a while. It is beautiful out here. I hope everyone is having a good labor day. I'll update when I find out what I'm getting on the trial.

Heather.

Rehost of Run/Walk Form

Sorry I haven't written in so long I have been miserable with neck and arm pain. You know the neck pain I have been complaining about since May? Well Monday we did a neck MRI and lo and behold there is a small tumor mass that is wrapped around my C6 nerve coming out of my neck that is pressing on the nerve causing the neck, arm, shoulder pain and the numb right hand. It had gotten so bad in the last three weeks that all I have done is lay around on ice and heat and take pain pills. I went to see a pain management doctor on Tuesday and he gave me a steroid injection in the epidural space in my neck. It's supposed to help the pain and reduce the inflammation and hopefully I can regain a normal life again. It hasn't helped yet much but he said it could be 2-14 days before it starts to help.

I guess I will also be starting radiation to that area to try and shrink that tumor. It's in a bad spot around the nerve and it's sitting on an artery so it's not possible to biopsy or remove it.

I tried to go out and exercise once in the last two weeks so you know I must not be feeling good. I'm going to try and go walk right now, I'm so stiff from laying around.

The WR fun run/walk is coming soon!! I've gotten a lot of response for walkers and runners and I'm so excited. The shirts have been ordered but I did order just a few extra. But remember you can come and walk or run without having to sign up. Just show up a little before 7:30 on August 22nd and join us. I only needed pre registration if you wanted a shirt. I hope to get at least 50 people there if not many more. I already have around 40 signed up so I'm hoping lots more get up and come out, you can even bring little ones in strollers if you want! Just be there!

There will be 1st, 2nd, and 3rd place medals in each gender age category, 19 and under, 20-29,
30-39, 40-49, and 50+. By the way, the shirts are white with the design just in the corner left side. I did it that way so it wasn't so large on the front and you can wear it again and have it not be so big. Hope you like them.

Have a great day! Heather.







http://www.yousendit.com/download/Y1Rva0ZkNEhQb0pFQlE9PQ