Uncle Bob

Has it been two weeks since my last post? Yep, I believe so. We've had a rather busy stressful last few days. As many of you know, John's oldest brother Bob has been battling cancer. He was diagnosed a year ago with stage 4 esophageal cancer. Two weeks ago, he was hospitalized and we were told he could go at any time. But he had a miraculous recovery and made it home 4 nights later. We actually received a photo of him sitting up and playing his guitar the night he got home. We were so amazed! That's why it was such a shock when we got a call the very next night that he had passed. He had another GI bleed and did not recover. It was 10pm on Tuesday and John had just gone back to work in NC. He started out right away and met up with me on the way and we went down together. For the next 2 days we stayed in MIlledgeville to help plan the arrangements. Then we came back to pick up the girls and spent the next 2 days down there for the services. It was a beautiful service. John spoke and expressed the simple life Bob led and his love of music and the outdoors. We all got to spend some wonderful time with family we rarely see. It's a shame that it takes an event like this to bring us together. But as Caroline said, we love our "country" family.

As for me, I have been feeling fine. I've been taking it easy, sitting around a lot, taking naps frequently, and pretty much not exerting myself at all. It's frustrating not being able to do things like I normally should be able to. But I just keep hoping that at some point I will get my energy back. I'm still on schedule with my chemo and I'm thankful to say that it really hasn't gotten me down at all. I don't have the "yuckies" like I did before which is an incredible blessing!

This wonderful weather has been huge in making me feel better. As I type right now, I am sitting on our back deck with the company of the girls and our dog, Penny. Rachel Rose has found an inchworm which she named, Greenie. Let's hope the poor thing finds his escape soon! As much as I would love to be down in the yard working, I know it's not the best thing for me. I'm all about the healing now and not putting any extra stress on my body. I did plant a few vegetables and they are doing really well. Even my strawberry plant from last year has come back and has made a few blooms. I hope we get some strawberries this year! The geese are back this year and we should see some little goslings soon. It's always fun to watch them. Usually, if we start feeding the mom and dad, the babies get used to us and will let us pet them. If anyone would like to come pet the geese or come fish in the pond, just give us a call. We'd love to have you!

Tomorrow is my last treatment for this first round, then I get a week off. I'm really hoping the cold caps keep working because my hair is really coming in. it's wavy again like it was last time it came back in. I've got these curly wispies flipping out all over. But I love it - it's hair!! It probably could use some color, the last I used made it orange. But I don't want to stress it any more than necessary. Plus, I've heard that chemo can have strange effects on hair color, wouldn't want to have purple hair or anything!

Well, Rachel Rose has decided to let Greenie go free. Very proud of her! We'll see what will be the next thing she's on to . . . there's no telling with that one!

Chemo, done!

Chemo went very well today. It was longer than I expected, 5 hours! But I'm hoping to get it down to 2 hours soon. My beloved nurse, Rosemary, was assigned to me today and that was a huge comfort. She knows me so well! She was as relieved as me that I have a port now. She was not looking forward to finding a vein today!

The port access went fine. I've heard it can be really painful since they have to press really hard with the needle to puncture the surface. And I only had mine put in last Wednesday and it hasn't healed all the way. But all things considered, it was a breeze. I think I figured out that I can deal with acute, sharp pains like needle sticks. It's the internal general ill feelings that are torture to me - nausea, achiness, flu-like stuff. It's then that I just want someone to shoot me and put me out of my misery!

Oh, and I did used the cold caps. They weren't as uncomfortable as I have been reading online, which makes me worry that they aren't going to work. Maybe next time I'll wet my hair first and use dry ice to get them even colder. I'm also going to start using ice packs on my eyes to try and save my lashes and brows. I'm going to look like a total idiot, but ask me if I care?!! Better to look like an idiot for an hour or two than to be bald 24/7!

I got through both drugs with no reactions, which is awesome!! And this evening, I had a great appetite. For dinner, we did a fun meal. We used one of our restaurant gift cards and just ordered a bunch of appetizers that we all shared. It was like party food for our own little private party! And now, I'm going for the ice cream for dessert! Oh yeaahhh!!!

Thanks to everyone for the thoughts and prayers for today - they worked!!! Of course they did, God is amazing!!

Chemo tomorrow

Getting everything ready for chemo tomorrow - cold caps are in the freezer, gathering up blankets and coats to wear with them, changed bandages on port incisions, and giving myself a pep talk. I am so hoping I tolerate this chemo and don't have too many side effects. I want to be able to live my life as normally as possible for the next six months. But I want it to work!!

A friend loaned me some books on diet and how nutrition can heal diseases. They are a wealth of information and what's interesting is they go right along with the other anti-cancer books I've read. I really want to give it a try, but it can be so hard. Finding the foods is one thing and preparing them is another. One smoothie calls for the stem of an unripe pineapple, brazil nuts, and bee pollen, among other things. And you have to blend them in a 3-horse power blender. I wish I had my own personal nutritionist/chef to make my food. For now, I am just trying to eat more fresh fruits and veggies, not so much sugar, flour, and processed foods, and organic as much as possible. If anyone has any advice about diet, I am all ears! I really do believe that what we feed our bodies can act as much like medicine as prescriptions can.

I wish I could exercise (never thought I'd hear myself saying that!!), but I'm still dealing with the shortness of breath. Any exertion - walking up stairs, taking a shower, going to the mailbox, it makes me so out of breath. My heart beats like crazy and I huff and puff for a good five minutes. Yesterday, I was feeling really good and Caroline and I ran out to the store for a birthday present. When we came out, it was pouring rain. And we had no umbrella. So we took off for a quick jog to the car which was parked pretty close. I almost passed out when we got there! Lesson learned, no impromptu cardio for me! Any other time, I would love an excuse to skip exercising. Now, not so much.

Right now, I'm watching the girls play the Wii game "Just Dance 2" - HIGH-larious, by the way!!! But I want so bad to get up and do it with them. Probably a good thing I'd get out of breath. Knowing my kids, they would get out the video camera and I'd be on YouTube within the hour!

Okay, so I'll post tomorrow about how chemo went. The first treatment of Avastin takes an hour and a half, plus the Abraxane is 30 minutes. If I do well, then they speed it up and for the rest of the treatments the Avastin will just take 30 minutes, too. That will be wonderful - total of one hour each week! Really, really hoping this plan works out!

Cancer is like a plague

I did get my port put in this morning. Everything went fine, John and I even went to eat lunch at O'Charley's afterward (thanks to a gift card!). I don't remember it very much since I was still sooooo sleepy. But the port has not bothered me too much, just a little sore. It's still bandaged so I don't have to look at it yet. Monday is my treatment day and they'll take off the bandage then to access it. I'm anticipating an easy day of it with the new port and new meds. I'm hoping to breeze right through it!

I've been trying really hard to take it easy so that my strength is built up enough to tolerate the chemo on Monday. I DO NOT WANT to end up in the hospital again!!! I'll have my blood drawn on Friday probably and they'll decide then if I'm good to go or not.

This weekend John is going to visit his older brother Bob, who also has cancer. I wanted to go with him, but since it is a 4-hour trip, I'd probably better stay home and keep resting up for Monday. Bob has stage 4 esophogeal cancer that has spread to several other organs. He has had a really hard time tolerating chemo, so they've decided to give him a break from it. He's in the very advanced stages and feels terrible. I've only had a taste of the misery cancer causes, Bob has been dealing with it for months now. I know how unending it can seem when you're in the midst of the pain. He just wants some relief. We would appreciate any positive thoughts and prayers for his peace and comfort. I have some incredible prayer warriors in all of you! I'd like to share with Uncle Bob!

Going for port placement tomorrow

I decided this time around with chemo, I'd better get a port put in. Finding veins for IV's has gotten to be torture. Even though it grosses me out to think of some little appliance remaining under my skin permanently (ewwwww!), I've heard it's alot easier. And since I'll be getting a treatment every week for 3 weeks in a row, I need easy!

I've been feeling pretty good lately. I still get really out of breath anytime I move around too much. I'm using Advair diskus and I think it might be helping. But I can just tell I am not my normal self, I can tell I've got cancer. Hopefully, this chemo will work and my breathing and energy will get back to normal. I'm doing everything I can to give it the best shot.

John has started back to work and Mom has been staying with me when he's not home. We've had some incredible meals brought to us and the mail continually delivers wonderful cards and gifts. Thank you to everyone who has helped us!!! We are so blessed!

It's a go for chemo!

I never talked directly with Dr. S, but when Beth told him I was having doubts about the chemo drugs, he told her to reiterate to me that ALL the doctors in the council agreed this was the best course. Avastin works by cutting off the blood supply to the cancers. It's not a traditional chemo, it works on angiogenesis. And Abraxane will work differently combined with the Avastin, but it will still work on killing the existing chemo cells.

After hearing that he feels strongly about these drugs, I feel better about taking them. I just wanted to make sure another drug wouldn't work just as well. He is the cancer doctor, after all, and I do trust him.

So, I will go for my first treatment of this new protocol on Monday, March 28. I will go in monthly cycles - week one will be Abraxane and Avastin, week two will be Abraxane only, week three will be Abraxane and Avastin, and week four will be off. I'll do this for 6 months, I believe.

One thing I want to try this time is a hair-saving technique I've been reading about. It's called cold cap therapy. Basically, I'm going to try wearing a frozen gel-filled cap during my infusion. The cold will slow down blood flow to my scalp, thus reducing the amount of drug that gets to my hair follicles. I'll probably have to change the cap once during the infusion since each cap stays cold enough for only about 30 minutes. I found a place that sells the caps, not cheap, but I should be able to get 2 caps in time for my first treatment. Here is a news clip about this technique http://abcnews.go.com/Health/OnCallPlus/cold-cap-therapy-women-chemotherapy-hair/story?id=11985624 I figure it can't hurt to give it a try!

Recommendation, no like!

Beth, the nurse practioner for Dr. S, called me this morning with the recommendation from the tumor board. Dr. S met with all the other doctors this morning and they all agreed I should change chemos. The cisplatin is too much for me. She said he would like to switch me to 2 new drugs, Avastin and Abraxane. I have heard of both of them. In fact, Mom took Abraxane when her cancer came back in 2007. It is basically taxol in a different form.

Here's the thing . . . I don't want to take the Abraxane. First, it makes your hair fall out since it's taxol-based. And second, it causes neuropathy. Mom had to stop it when her hands became too numb. Already, my feet are getting worse. It used to just be numbness in my toes. Now it has creeped into my whole foot. And my fingers. I don't want to make the neuropathy worse. It is most likely permanent where it is already. And third, I have had taxol twice now already, back in '07 and this past summer, and I still have cancer!!! I'm kinda thinking it's not working, so why keep trying it?

I explained all this to Beth and she said I could talk to Dr. S about everything. He won't be available until Thursday, so I'm just going to wait for him to call then. I don't know if it will irk him that I'm having doubts, if he will think I'm being difficult . . . probably not. He's pretty open and understanding. I just need to be on board fully with whatever treatment I'm getting. If I don't have faith in it, then it's definitely not going to work. There are lots of drugs out there that I haven't tried yet. I just need him to explain to me that it this combo is the best route. If he can convince me, then I'll be okay with it.

The hair thing is not supposed to be a big deal. I mean, what's hair when we're talking about saving my life . . . but I have to admit, it is a big deal. It will be so much easier to take the chemo and live the lifestyle if I can be normal at least part of the time. Being bald is not normal. I am really enjoying having my hair come back in. Even if it is growing back into a mohawk!!! All the waves and cowlicks make it look crazy, but it's hair! I like having hair!

So for now I'm praying for guidance and acceptance. Lord, please show me the path you have chosen for me. Guide my doctors with wisdom and compassion. Please give me peace to accept whatever is meant to be and confidence to believe it will work. I trust your will and know that I am safe in your hands. Thank you for the blessings you have given me and for this day of feeling good!