I received the results of my PET-CT scan on Tuesday when I went for chemo. We got to the hospital at 11:00a.m. After I signed in I went to medical records at the hospital to get a copy of the PET-CT scan report so I could read through it and be prepared with knowledge of what is going on when I saw the doctor. I was not surprised with the results of the scan, but I was disappointed.
I have widespread new tumor growth, and the tumors that were stable are now metaboically active. I have new tumors growing around my right lung, my right shoulder and humerus, and all over the right chest wall. I had hope that the swelling in my arm was from something other than cancer, and I had tried to think of all the reasons why I could have swelling and pain, but it is in fact cancer. I have cancer in my lymph nodes in the jaw, armpit, collar bone and neck. I have cancer growing in my right hip and pelvis, as well as the hottest most acitve cancer is in my left hip. I have been on strong pain meds and I am still in so much pain! The cancer is growing in my thoracic and lumbar spine. Suffice it to say, the chemo (Taxol ) is not working.
I requested to see the Doctor, not the PA, so we waited an hour and forty-five minutes, and who should walk into the room, but the PA. Of course I tried to ask her questions. She thought I should wait and do another 3 week cycle of the same chemo, but if the chemo hasn't worked after 2 months, I don't think it is magically going to start working. We (me, my mom, and Dan) were really frustrated that we had waited so long, and Dr. H was too busy to see us.. It is so annoying that drug reps don't have to wait as long as patients to see the doctor. We're the ones who are paying the doctor, and we have to wait FOREVER.... Anyway, that is a whole other issue....
Because I had waited so long and Dr. H didn't have time to see me right then, we decided to go ahead with my regularly scheduled chemo (taxol and herceptin). Then when Dr. H had a minute I would go into a room so I could talk with him about the new plan of action.
At 4:00 I was finished with my treatment, and we finally had a chance after waiting a little while to see the actual oncologist. He did a thorough exam, and after seeing what was going on with my chest wall, plus reading through the scan report, he agreed (DUH!) that the chemo was not working. He gave me a couple of options for the next chemo to do: xeloda and herceptin, or gemzar and herceptin. There also were a couple of other drugs we talked about taking after I do a 6 month cycle of the previously mentioned drugs; Avastin, tykerb, adryacmyacin, and taxotere. There are a lot of treatment options and combos out there, we just have to find one that can work against my aggressive cancer.
I am so scared that this is the beginning of the end. I am worried that when I have my brain MRI on Monday, it will show new tumors in my brain. I am worried that I am never going to be off chemo again, and it will be continually changing and trying different chemo combos to try to keep the cancer under control. Getting bad news like this is so scary. I just feel like there is nothing I can do, and the cancer is invading and growing, when I wish it would just go away. This is so difficult. I hate bad news. I wish I could just say that everything is going to be okay, but I just don't know anymore.
I get next week off from chemo, and will start the new treatment the next week. Dr. H's first choice is the Gemzar & herceptin along with the zometa for the bones. Gemzar is supposed to be a pretty mild chemo, and it doesn't cause hair loss. Go figure. I lost my hair for nothing. I am trying not to focus on that, and trying to think of the positive of loosing my hair (cute new wigs, and hats etc.) but when it comes right down to it, I would rather still have MY hair. It is what it is. That is my mantra. It is what it is.
At church on Sunday, we had a Relief Society lesson about worrying and fear, and there was a saying that was shared that has stuck in my head: "Why worry when you can pray?" Worrying about all these things isn't going to change what is, and what will be. So instead of worrying, I'm just going to pray. I would appreciate all of your prayers as well. So, we're not going to worry, we're just going to pray.
Another thing that I keep on thinking of is: No matter how bad you have it, someone has it worse. And no matter what trials you are facing, you can always do something for someone else, whether it is a smile, a card, a phone call etc. I have found that as I have tried to think of others this week, even though I am disappointed in my bad news, I can still find joy and happiness.
And also, it is so hard to feel sorry for myself when so many people do so many small acts of kindness to show that they care. We really are so blessed, and Heavenly Father is looking out for us, and this is His plan, and He will provide for us, no matter what trials or burdens we are called upon to bear.
I was so excited when I found a cute new short wig, and felt so much cuter wearing it than my out of control natural curls. Don't get me wrong, I loved my curls, and much rather have them than be shaved and bald like I am now. However, I had so much fun getting the first wig, I decided I needed to try out a couple of more styles. So I went a searching on ebay, and found an ebay store that was selling close out beauty supply products. I was able to buy 2 more wigs at really cheap prices, and it is SO OUTRAGEOUSLY FUN to change my look so totally, so easily. So without further ado, I introduce you to: Blond Amber; Do blonds really have more fun? I will let you know!!
 And here is red head Amber. I always associated the name Amber with a red head person, so as a teenager I actually tried this hair color much to my parents shock and dismay. I really love the color and cut of this wig, but you should have seen Dan's face when he first saw it. You could literally see the wheels turning in his head trying to think of what to say that wouldn't get him into TOO much trouble. He just gave me a big painful smile, and that just about said it all.
 And here is the wig I posted a picture of just a few posts ago. This picture is me and Bekah at SO you Think YOU can DANCE? Live tour. Oh my gosh it was so fun!!! The dancers were SO more amazing live, and the banter between numbers with the performers was hilarious!!! I am so glad we went. Even though the next morning my throat was about swollen shut from yelling and cheering, and laughing so much. I have had a bit of a cold, and then I have sores in my mouth and throat from chemo, then add cheering on top of that, makes for one miserable girl the next morning! I have more pictures from this event I will post over in pictures one of these days.
 This picture is of me a year ago at my sister in law's, Kellie's, wedding. This wig had a very itchy irritating cap on it so I probably only wore it a total of 6 times. The wigs I bought this time around are so much more comfortable, and not as itchy and irritating. Also, I think wearing wigs during the summer months is just way too hot, and wigs seem a lot more doable during the winter.
So which wig do you like the best? Please feel free to leave a comment and let me know which one you like best. Do I look better as a blond, brunette, red head, or dark rooted blond. My personal favorite is the dark rooted blond, and the red. I might have to get another of the red head style, but dark rooted dark blond color. Oh what fun all these options are!!!! Not to mention all of the options I have with all of my hats. But that is a post for another sleepless night!!!!!!!!
I am big. I am bald. I sure don't feel beautiful, though.........
I was listening to my ipod while I was at chemo on Tuesday. I have the soundtrack to Hairspray on it. I was laughing inside when I heard the song that Queen Latifah sings on it called "Big, Blond, and Beautiful" I thought that sounds just like me, except I am big BALD and beautiful.
Because of the steroids I have been on to prevent brain swelling from the tumor and brain radiation, I have gained 23 pounds in 3 weeks. That is so depressing. I took my last dose of steroids yesterday, so I hope that I stop gaining weight, and the weight I gained goes away quickly. What is even more depressing is that I have gained that weight, and I haven't even been eating very much because I feel so crappy from the chemo. You would think that if I have to go through all of these cancer treatments and be sick, at least I would loose weight. Oh well.
I didn't want to be bald for my 30th birthday, so I prayed that my hair would last until then. I trimmed my hair really short when it started falling out like crazy on Sept. 3rd. The last few days I just put gel in my hair, and lots of hairspray so my hair was all stuck together. Otherwise I was shedding hair EVERYWHERE. SO messy. I had to wear a soft knit cap when I slept because so much hair fell out while I slept. Poor Dan kept on getting hair in his mouth at night.
So, Monday in the middle of the night, I couldn't sleep. I had taken a shower before bed, and when I washed my hair, I tried to rinse the shampoo out, and my hair just kept falling out, and falling out, and falling out. I didn't want to shave my head ON my actual birthday (too traumatic). So I went to bed, but couldn't go to sleep. I finally got out of bed about 3:00 in the morning, and decided I was just going to shave my head. But when I got out of bed, I tripped and fell and woke Dan up. He helped me shave my head, and when I looked in the mirror and started to bawl, he just held me and cried with me. This time loosing my hair has been a lot more traumatic.
Here are the kids responses to my "NEW NO-HAIR-DO"
Blake: He just rubbed my head and said, FUZZY.
Bekah and Abby just gave me a big hug, and both told me they still thought I was pretty.
Caleb: Mom, with your hair like that, you look just like Daddy's twin, and it is SO cool.
Ammon: When I took my turban off and showed him my bald head for the first time (He was too young to remember about me being bald a year ago) he said "On Mom, put it on Mom." and took the turban from me and tried to put it back on me. I tried to have him rub my fuzzy head, (because he really likes rubbing Daddy's fuzzy head). But Ammon won't even touch mine. I think he will get used to it.
I will be brave and post a bald picture of me later, I just haven't had any taken of me yet. Maybe once I loose some of my steroid weight. But here is a picture of my beautiful curls. Maybe next time when my hair grows back in it will be pink and frizzy. At least I know it will grow back. And I ordered a couple more cute wigs. I think I will just have to cover up the mirrors in the house so I don't have to look at myself.
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