Saturday, August 29, 2009

Update





I didn't realize it had been so long since I last posted! I started a few posts, but never went back to finish I guess.
It was a good week & weekend! I felt good, so we did a few more activities. We are finally getting a break from the heat around here. Not every day yet, but last Monday it was pretty mild, so I took Annabel to the zoo. I left the stroller in the car and she did GREAT. We had a fun time. I didn't even have to carry her until the very end. We also went to Gymboree twice last week. I am hoping to have a fun, busy time early this week since my next treatment is on Thursday. It looks like the weather will be much cooler, so hopefully I can take Annabel back to the zoo, to the park, etc.
We went to Lavonia on Saturday for our niece Callie's 6th birthday party. I can't believe she is already 6 because it seems like just yesterday that she was a teeny tiny baby! It was a nice pool party at Lee's sister's house and then we went out for pizza afterward. It was a good time and good distraction. Annabel loved being around other kids and spent a lot of time in the pool with Scott. He must be more fun to swim with because I thought she was pretty unimpressed with the pool/swimming! Neko (our bulldog) also turned 6 yesterday!
We are thinking of putting Annabel in a twin bed soon in the hopes that bedtime will be a little easier for me. Despite all of the well meaning advice, I have worked out my own bedtime routine. Bedtime is the best of times and the worst of times all rolled into one! My favorite time of the day is when I sit down in the rocking chair and hold my clean smelling baby to rock her to sleep. My least favorite part is when she fights sleep tooth and nail and I end up rocking for an hour (or more...or giving up and putting her in our bed...ssshhhh, no criticizing...I have cancer, remember?). Again, I know that my "routine" is not always ideal, but it works a lot of the time. I rock her to sleep and then very carefully deposit her into her crib. The issue here is that nobody else seems to be able to put her into the crib without waking her up. The mattress is set to the lowest setting for our tall baby and the rail still only comes up to her armpits. She could definitely get out if she wanted to. I have seen her effortlessly hoist her foot up to the top of the rail. So, I am thinking that switching her over to a toddler or twin bed won't make things worse, but it might make things easier for the nights when I am not feeling great. The other part of the sleep routine is that when she wakes up in the night, we put her in bed with us. I definitely believe in co-sleeping, but my difficulty with it is that I don't like to put her to sleep in our bed and I also don't want to go to bed at her bedtime. Some people have said that this is confusing, but I disagree. It is a routine and it is what we do every night. Most nights, it works well, but sometimes we get on a bad streak and it is hard to get her to bed. It's all about routine! I have to remind myself of that when we get off kilter.
I had an ultrasound on my ovaries last week. All clear! I have mentioned before that I get a shot (pellet, in the stomach) every 3 months to put my ovaries to sleep, so that should keep the cancer at bay according to the doctor. Because I am BRCA1 positive (gene mutation), I will have my ovaries removed to improve my survival rate and reduce my recurrence rate. My OB/GYN feels that I should have a laprascopically guided hysterectomy because she says there is no reason to keep the rest of it if the ovaries have to go. I was hoping to have the double mastectomy and the hysterectomy at the same time, but both my oncologist and OB/GYN feel that this will be too much surgery at one time. It's likely that I won't have the hysterectomy until sometime next summer when I finish the rest of my treatment. I am confused about the timeline, but I hope to get that cleared up when I see my oncologist on Thursday. According to the clinical trial, I will have 4-6 weeks of recovery time after my last chemo treatment (if all goes as planned, that will be November 5th). Then I will have my bi-lateral mastectomy and then (I think) another 4-6 weeks recovery before I start radiation and begin Avastin infusions again. I have 30 weeks worth of Avastin....once every 3 weeks, 10 times. They have to wean me off of that before surgery because I think it causes you to bleed, so I think it will be quite a while before the hysterectomy and breast reconstruction. I'm pretty sure that they won't do breast reconstruction until after radiation, so I'm not sure where all the rest of the surgery fits in. I have a few plastic surgeon recommendations. Scott wants to do some "field research" at Nepal's and/or Platinum Plus, but I have told him that I don't want stripper boobs; regular boobs will be just fine with me! Ha, ha. If anyone knows of an exceptionally talented plastic surgeon in the area, please share.
The countdown is on again....my next treatment is Thursday. It will be the first treatment of A/C and I am very nervous that it will be harder to tolerate than the taxotere. But at least I'm halfway finished with chemo! I am definitely feeling the cumulative effects. It was a longer recovery last time and I get tired easier. I am still having trouble sleeping sometimes and have anxiety, but I think that is just part of this whole crazy ride. On the hair front, I have some that never fell out and it continues to grow. It looks weird, but I am strangely attached to it! I try to convince myself that I am ok without hair, but every now and then I allow myself to admit that I would really really like to have it back! Practically speaking, it's nice not to have hair, but I also don't like having to find something to wear on my head every time I leave the house. I have gotten used to it and sometimes even "forget" when I'm out and about, but then I am rarely out and about. I am still wearing bandanas most of the time, but I have a nice hat that Karen sent that I wear out sometimes. Not digging the wigs still. I might just change my mind as the weather cools off some.
Speaking of wigs, on Saturday when Scott and Annabel and I were on our way to Lavonia, we drove by a garage sale and I saw a wig on a post. I asked Scott if he would go and get it for me. Well, we stopped and Scott went and got the "wig". It turned out to be a plastic dog with hair, like some sort of collie! He paid $1, said he wasn't going to NOT buy it once he walked up there. We named her Harriet and Annabel was amused until her head fell off. Oh, well! It was pretty funny.
I am currently seeking a new tv show to watch on my iTouch during treatments. Any suggestions? It has to be something that I can get from iTunes I think, so that I can download it. I never finished last season's Lost, so I guess I could start there....Although I will say, with my current "chemo brain" issues, I probably won't be able to follow it! It got pretty complicated there in the end with all the time travel and stuff. I am thinking Mad Men. I haven't watched that yet and I hear it is pretty good. My favorite show right now is True Blood, but only one episode left this season! I missed last night, so I will probably watch it the next time I have insomnia. Which will probably be really soon!
Pictures are: Our 6 year old Neko, Annabel in the sandbox, Annabel partying, Annabel partying with Daddy

Monday, August 17, 2009

The BREAST Years of My Life

Last week I realized and pointed out to Scott that for 2+ years now, I have been either pregnant, breastfeeding or dealing with breast cancer. So, now I will call these the breast years! Lots of other (more important!) stuff going on, of course, but I can't think of another time that shares the common theme of BOOBS.

After my chemo on Thursday, I had my regularly scheduled Nuelasta shot on Friday. My Dad and Kim came from Knoxville to pick me up and take me back to recover there. I had a great, relaxing week and was very comfortable on the bad days. Annabel and I were very well taken care of despite the fact that we missed Scott! Kim and Jeff took Annabel and I to Fox Den to swim in the kiddie pool (pic above of Uncle, Annabel and I). I enjoyed that since that is where we used to swim when we were little. Annabel wasn't too impressed despite the snazzy new float that her Auntie bought for her. My Dad cooked me my favorite dinner on Monday night and I ate lots. Kim took us to the Binghams one afternoon to swim and hang out. Annabel and I got to meet all the Bingham kids. She had a great time playing and we had a really nice visit. We had a delicious family dinner at Seasons on Tuesday night and then I packed up yesterday morning to come home. I was really sad to leave, but also missed Scott. And the dogs!

Annabel is really chattering away. Her current favorite word is "MINE". I guess it's an age thing because she's pretty spoiled and there's no reason why she wouldn't think everything is hers! Ha, ha. She picks up new words every day and we are having "conversations" now. Another new quirk is that she has clothing preferences. Not always a good thing, but cute nonetheless. When we came home last night, she went through all of her clothes and tried a lot of things on. She likes to practice getting dressed and undressed. It is entertaining to say the least! She picks out some interesting outfit combinations.


Some days are harder than others. I think I am feeling the cumulative effects of the chemo now, so I get tired easier and when I get tired, sometimes I feel sick. It seems like I am always feeling sick; it just wears me out. But also, I think these few days in the treatment cycle are sort of a low point. Tonight I indulged myself in "WHY ME". I think it's a waste of time to ask why this happened to me, but I am worn out and short on sleep. Don't worry, I have already taken my Ativan to combat the icky stomach and the anxiety, so I hope to sleep soundly tonight and wake up feeling tons better tomorrow!


And on a more positive note, I have also made an appointment with the cancer society for some counseling. The woman that will be counseling me also usually leads the breast cancer support group that I attended a few weeks ago (she was on vacation that day). So I look forward to meeting her and I hope that she can help me with my cope-r (coping mechanism), which is also a little run down from working overtime for the past few months. I have great support from my family and friends, but I look forward to talking with her since she's an expert! Our Greenville County Cancer Society has lots of great programs that are free to cancer patients. I am so grateful!


All of this has been happening so fast and I feel like I don't have a lot of control over the situation, but I am starting to read and learn more. I am going to make an effort to learn about some alternative complementary therapies and have already made an appointment to see an iridologist. I don't know much about iridology, but it looks really interesting. An iridologist looks at the iris of your eye and is able to determine weaknesses and strengths in your body and then suggest herbal supplements, diet, etc. to help. Of course, I will take any suggestions to my doctor for approval/review. My appointment for that is next month.

I feel like I'm turning into a hermit, but it is so dang hot outside! Not to mention that leaving requires getting ready to leave and trying to wrangle 25 and a half pounds of 20 month old. She is a good girl, but she is not always willing to be compliant, whether it be a short trip or a long trip out of the house. I am ready for some cooler weather!

Thursday, August 13, 2009

#4 is DONE...Halfway finished with chemo!!!

Today was my 4th chemo, marking my halfway point! My oncologist is happy with my progress and my tumor shrunk another centimeter. We talked about the results of my genetic test and yes, I'll need to have a bi-lateral mastectomy as well as an oopherectomy. The results are not going to change my current course of treatment; my doctor is even happier that I am participating in this study since the treatment is aggressive and above and beyond what I would be getting normally.

My next (5th!) treatment will not be taxotere; it will be A/C, also known as the "red devil". I am trying to prepare myself for this because I hear that the side effects are worse with this concotion. The chemo nurse said that I will likely have more nausea and fatigue while I'm taking it. The doctor prescribed me a high octane nausea relief medicine in preparation. I am worried about it, but I am also anxious to get through with chemo. If all goes well and as planned, I should finish up on November 5th.

As far as the surgery goes, there is some amount of recovery time from chemo before I go under the knife. I think it's 4-6 weeks. I will be meeting with a plastic surgeon soon to learn more about my options for reconstruction. My doctor said today that she would probably want to delay my oopherectomy (ovary removal) until after radiation, but initially, I don't like this plan. If they're going to remove them, I'd rather it be when I have my mastectomy. I don't want anything new cropping up! The doctor is concerned about my having to deal with menopause while I am trying to recover (probably emotionally as well). While we decide that, she took a CA125 blood test that screens for ovarian cancer and I will also go to my OB/GYN for an ultrasound on my ovaries. The reason that I don't want to delay the ooph is that if I don't have it with the mastectomy, it will be a long time before I can have it. After I recover from surgery, I will have radiation concurrent with starting up again with Avastin for 30 weeks (10 cycles every 3 weeks). So I wouldn't be able to have more surgery until well after that. I'd rather get it over with already!

Annabel is 20 months old today! I can't believe how big she's getting and how much more rewarding and special our relationship grows every day. Being a Mom just gets better by the minute! I get the most joy out of spending time with my little family. I am sad that she will not be a sister or have a brother or sister; that was not the original plan, but I am so grateful to have her and we will just have to spoil her extra! Ha, ha. That being said, knowing that there will be no more pregnancy or baby has somehow made my vision of our future clearer. And I like what I want for us and what I see for us. So maybe in a way, this part of it is helping me with my good daydreams, which are a great distraction!

Below is a video from a few weeks ago when Mario and Shannon invited us to swim at his parent's pool. Chrissy was in town and Scott and Annabel and Karen and I went over for a visit and a swim. We had a great time! Oh, Friggle the chihuahua is the star of the video. Scott put some music to it and I think he made a good choice! He was beind the camera, of course.

video

Sunday, August 9, 2009

Update

Long time, no post.


Annabel has been sick for about a week. I think she's finally back to feeling good again! Last Sunday night, we went to Mario and Shannon's for dinner (excellent as always!). She was sort of crabby and had a nasty diaper, but we thought that she was just wiped out from a busy weekend. On Monday, she had a fever and that continued through Friday. We took her to the doctor the first time on Wednesday and since she didn't have any symptoms really other than being run down and not sleeping well, the doctor said it was probably just a passing virus. We took her back on Friday night because she still wasn't feeling well, still had a fever and also broke out in a rash. Turns out, she has/had the 5th disease. Apparently that can cause muscle aches (hence the fitful sleeping) and just feeling bad. I endured many temper tantrums last week! Annabel is usually pretty agreeable and easy to get along with, but she was far from either of those things when she was sick. It was exhausting and I am so glad that she is on the mend.


Now the countdown is on for my next treatment on Thursday. I am not looking forward to it, but at the same time will be glad to be halfway finished with the chemo portion of my cancer journey. I am also nervous about meeting with my doctor before treatment because I know it will be time for us to discuss the results of the genetic test. I know that what waits for me is a recommendation to have a bilateral mastectomy as well as an oopherectomy (ovary removal). I have been preparing myself for it, but I don't want to get that ball rolling. It's one thing to know and another altogether to have to plan for it. I am pretty sure that my doctors will want me to have surgery and then complete radiation before reconstruction, so I will be boobless for some amount of time. At least my hair will start growing back before I lose the boobs. I have learned that I am not that vain since I am bald, but I'd rather not test it by being boobless and hairless at the same time if I can help it!

I went to a breast cancer support group last week. It only meets once a month, so that is disappointing. The next meeting will be when I am having treatment #5, so I won't be able to go. There were two other women in the group and then the group leader. The regular group leader was on vacation, so I'm not sure what it is usually like, but it was helpful to meet other people who are in the thick of it like I am. I feel like I did a lot of talking and asking questions. I also went to the Ear, Nose & Throat doctor this week about my continual sore throat. He thinks that I have reflux and says that over the counter medication won't touch it, so he sent me on my way with a prescription for an acid reducer. That was after he stuck a hose up my nose and down my throat! I don't recommend that; it was traumatic and I almost passed out after he finally removed it from my person. He told me that it is usually men who pass out or get woozy, so I'm not sure what that was supposed to mean. I had to recline there for a while with a wet paper towel before I could leave. Waaaaaaahhhhh! You would think by now, I'd be used to all of these medical procedures.

Thank you again for all the support and well wishes! It brightens my days!