I am sorry I haven't posted this update sooner. I got the results from my brain MRI, and they are good! My brain tumor has continued to shrink, and there were no new tumors. Needless to say, we are all thrilled.
I have enjoyed this last week during my off week of chemo. We had a wonderful Easter, and a fun spring break.
I fully intend on doing a longer entry soon, and plan on adding pictures from our St. Maarten trip, Easter, and activities we have done lately. It is just hard for me to type right now because I have tumor pressing on the nerve of my right arm, making my arm and hand numb and tingling, and my fingers aren't working right. Very frustrating. It is a priority to get this blog and picture page updated this week, so check back!
I survived another week of chemo pills, along with Herceptin last week. I finished my week of pills yesterday. I am SO glad. My oncologist increased my daily dose from 3000mg to 3500mg, in hope of slowing the cancer down. It takes a couple of days for my stomach to recover. I am still really tired. No matter how much I sleep, I am still tired.
I am enjoying the warmer days. I even went outside and blew bubbles with Ammon. I sat and soaked up the sun while Ammon giggled and made a big soapy mess.
I have a brain MRI tomorrow. It hardly feels like it has been 3 months since my last one, but it has. I really hate tests. They make me feel so anxious, plus the actual test is not very pleasant. I am praying for good results. I haven't had any new or unusual headaches or symptoms, so I am hopeful that my brain tumor is still shrinking, and that there are no new brain tumors. Wish me luck!
We got good news on my brain MRI last week. My brain tumor has continued to shrink, which is good, and their are no new visible tumors, which is really good. I was so afraid that I would have new brain tumors, and am so thrilled that I didn't. I finished another week of Xeloda. The new nausea meds, Kytril, made last week a lot more managable. Of course it always has it's price.... A 30 day supply costs $2000. Yes that is $2000. Because it is a new year, (HAPPY NEW YEAR!) our deductibles are all reset, so when it is time to refill it, it will cost us 50%, or $1000. It is nearly impossible to put a price on preventing nausea. I plan only taking the minimum amount of pills, and I think I can stretch my 1 month supply to at least 2 months. Once we meet our $5000 out of pocket for the year, the insurance kicks in at 100%. How incredibly relieved and grateful we are not to have to worry about where the money will come from to pay the mounting doctor bills, thanks to the wonderful generosity and success of the Run 4 Amber Fundraiser. We were able to pay off all of our outstanding doctor bills for 2008, and start fresh for 2009. In just a few short months those bills will mounting, and we already have money from the fundraiser to pay these. You can not understand the stress relief this gives our family!
Don't get me wrong, I am grateful that I have survived this aggressive disease for almost 20 months, but the surviving is pricey. I half wonder if I am worth it..... Fighting cancer is hard. I always feel like such a burden on my friends and family, and especially my husband and children. Even though I know there is a purpose for suffering, I long to reach the point where the suffering ends. The optimum end would be a miraculous cure, but the alternative end would be death.... I just try to find at least one small thing each day to help me find the will to continue to fight. Whether it is spending time with family, a phone call of visit from a friend, a husband who tries to meet my every need, and NEVER complain, hugs and kisses from my kids, smiling, laughing, praying, looking out the window and watching beautiful snow, listening to music, playing the piano. Each of these small things can give me the burst of hope that I CAN endure, that it IS worth it, and that I am BLESSED because of my fight against cancer. So even when the day comes that cancer wins the battle that takes my life, it can not take all of the life that I have LIVED. So when my obituary is written, it better not say "She lost her battle against cancer." Because I win my battle with cancer each and every day. A day without laughter is a day wasted
Charlie Chaplin
I had my follow-up consultation for my brain tumor with the radiation oncologist today. We finally got some good news! My brain tumor has shrunk to little less than half its original size in the 6 weeks since I had gamma knife, and no new brain tumors. The rad. onc. said that usually it takes about 3 months to see this much of a response, so it was really good news!! It's about time! Lately it seems like we have just had bad news, so it is refreshing to actually have good news. I had myself mentally prepared for bad news, so I almost don't know how to react to good news. Now we just need to get the cancer under control in the rest of my body.
I have been having so much pain in my left hip from all of the cancer growing, that we had to increase my pain meds, and I still have to take additional pain killers for breakthrough pain. We discussed with the radiation onc about the possibility of doing radiation on my hip so I can get some pain relief. The plan is to try the new chemo for a few weeks, and if my hip doesn't start feeling better, I will take a little break from chemo and try some radiation. If the chemo works to kill the cancer cells, then that should give me pain relief. So either way, it looks like pain relief is in the future.
The brain MRI did show that I have some sinus problems in my left frontal and anterior sinuses, so that is actually what is probably causing a lot of my headaches, and not the tumor. I will try to find time to visit a ENT Dr. about that. As if I don't already have enough doctors appointments, etc.
Thank you everyone for caring so much about me. Your prayers and well wishes are so appreciated. I am truly humbled by all the love and support that we are shown. We really could not bear the burden of this trial without all of the hands that help to lift the weight of it with all of your willingness to serve and help us. Please know how much we love you all, and we are so grateful for everything all of you do to help us. Even though having cancer is so difficult, and the treatments etc. are almost unbearable, I am still so grateful because of all the little miracles I have seen, and even more so, to be the recipient of so much caring and kindness. Unless we taste bitter, we can not enjoy the sweet. And the sweetness of all the service and love that we are shown makes our lives sweet indeed.
Well, that title is misleading, because the mask was made of titanium and plastic, but I sure felt a glimmer of what it would be like to be the Man in The Iron Mask. Even though I had to wear that stupid frame thing, it was for a specific, GOOD purpose, but it still felt so demeaning and inhumane. I can't believe that it has been 6 weeks since I had gamma knife.
I have put off blogging about my Gamma Knife a.k.a Stereotatic radiosurgical treatment. Gamma Knife is brain surgery without the knife. They use radiation beams to destroy the bad cancer cells in the brain, leaving most of the rest of the brain tissue undamaged. I slept through the actual gamma knife procedure, it was the PREP for it that was terrible. I have found that the prep for MOST of these tests, and treatments etc. turns out to be worse than the actual procedure.
When I found out I had a brain tumor, for the first time since I was diagnosed with stage 4 inflammatory breast cancer, I felt completely hopeless. I felt like I was secure in my illness, I felt like things were under control, and when I received that phone call from my doctor, I felt deep, heartbreaking, gut-wrenching sadness.
Anyway, the actual gamma knife treatment was painless. It was getting the shots of numbing medicine that was incredibly painful. I was supposed to receive some drugs in an IV to send me to La-la land, but I didn't receive them until right as the neurosurgeon was injecting numbing medicine into my head prior to screwing the frame into my head.
 In this picture you can see the nurse injecting my relaxing, la-la land medicine, right as they were prepping my head frame.
 For the radiation planning, they put this lovely plastic helmet on, to measure the angles of radiation. I felt ridiculous in this get up.
 This picture is the tray of screws they use to screw the frame into your head. I am glad that mine weren't the big huge long ones. you can see which size they used in the empty spots on the tray.
 Don't I look absolutely pathetic? I was so miserable with the frame. It was so uncomfortable. There were two screws in my forehead, and 2 screws in the back of my head. I couldn't rest comfortabley because of the metal around my head. I can't even find the words to describe how I was feeling during this whole procedure.
 Here is a closeup of what the frame screwed into my head looked like. I was so swollen and sore for weeks on the spots where the screws were. I couldn't turn my head, and I had four mini headaches where the screws were.
 This picture is of what they attach to the frame for the MRI, CT scan and actual radiation. It attaches to the head frame, so on each machine your head is in exactly the same place. This way they make sure they are accurate in their planning of the radiation and the actual radiation. Luckily I was able to sleep during most of the scans and actual radiation.
 Here I am on the machine where they do the radiation. I lay on the table and the round part opens and then they beam high dose targeted radiation at the tumor. I am not sure how the whole thing works, I just hope it did! The radiation onc. told me that there is a 70% chance that I will have more tumors grow, and even though the radiation has a high success rate on treated tumors, there is a high likely hood that after a period of time, treated tumors may start to grow again.
 These are the screws that were in my head.
 Here I am after I was all done. I felt like the hunchback of notre dame. I had all these weird misshapen lumps on my head for weeks after like Quasi Modo in the Disney version of Hunchback. It is hard to see in the picture, but I had big fluid filled bumps from where they injected the numbing medicine. As time passed, those lumps moved from my forehead down t my eyes, and I really had a swollen face for weeks after. At least my eyes are finally back to their normal shape, because I had a lot of swelling around my eyes and eyebrows.
I am so nervous for my brain MRI today. I see my local radiation onc, on Wednesday. After already having bad news with my other scans, I am so scared that my brain MRI will be bad news as well.
So that is my gamma knife experience. I really don't know if I could do it again. I guess I will make the decision when and if I have to.
My head hurts too bad to focus and type too much, but I just wanted to let you all know that my Gamma Knife procedure on Wednesday went okay, and that I am recovering. Having the metal frame screwed into my head was quite a bit more traumatic and painful than I imagined it would be, and my head is swollen and really sore still. I am on some pretty high dose steroids that are making feel a little crazy, and I still feel yuck from having chemo earlier this week. I will post more about gamma knife and put some pictures up once my head stops hurting so much. Thank you for your prayers, well wishes, and concern.
One of the best lines from the movie Kindergarten Cop is when Arnold Schwarzeneger has a headache from the noisy school kids, and one of the kids tells him, "It's a tumor." and Arnold says "It's not a tu-mor" in his accent. Well, I have had lots of headaches, and joke around and say "It's not a tu-mor." But this time, it IS a tumor. Dang it.
When I had my scans done in June, the new tumor growth didn't match the rise of the tumor markers. Then when my tumor markers did another huge jump, my doctor was concerned that I may have something growing in my brain. I have been having localized pain in my head, and some blurry vision in my left eye, and pressure behind my eye. I have also had a little bit of dizziness, and nausea. Once again because I don't like to worry people, or complain, and just want to believe that my symptoms were all in my head (no pun intended) I didn't tell anyone. Not even the doctor.
Anyway, I had a brain MRI on Tuesday August 5th, and then got the dreaded phone call from my doctor at 6:09 p.m. on Wednesday August 6th. I do indeed have a brain tumor. That is the bad news. The good news is that there is only one, it is relatively small at 1.5 cm, and it is in a easily treatable spot. I will have a procedure called gamma-knife when I get home from vacation. It is basically a high dose targeted radiation treatment to the tumor. Because it is targeted, it limits damage to healthy brain tissue.
I will update everyone once I know more, but know that we are doing just fine. We have been enjoying sunny St. George. I've been doing lots of resting and relaxing, and swimming, scrapbookin, game playing, and enjoying family time. We also were able to visit the St. George temple on Friday for a temple session, and then we took the kids there on Sunday evening. Bad news is easier to deal with when you keep an eternal perspective.
We are going to see The Sound Of Music tonight at the Tuacahn outdoor theater. We are all really excited for that. I have taken lots of pictures and will post some when I get back home.
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