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!
Dan pulled some strings on Friday and got Dr. H's secretary Meridan to fax him a copy of my scan results. Preliminary test results show that my hottest spot on my left hip is not as active, but all of the other bone mets are growing hotter than they were before. Not a whole lot hotter, but not shrinking and going away either. No mention was made of my liver, whether it was okay or not. Very frustrating! I guess I can assume it is okay otherwise the radiologist would have said something. The most concerning thing of the report was that my right lung shows uptake with mild patchy density in my right lung with mild airspace disease. I don't know what that means, whether this is cancer or not. So, I went to the University of Google to try to figure out it out, but I'm still not sure. I guess that is what the oncologist is for. I will have to wait for my next appointment and see what he thinks.
I was really hoping for some concrete evidence that this chemo is either working or not working. It seems like it may be slowing the cancer down some, but not shrinking it. I was hoping to see shrinking tumors, because that would make it easier to continue chemo. Or at least maybe see a lot of new growth so we know that this chemo isn't working, and then I could quit that one and maybe try something different. So all in all, no real answers. Not really bad news, but not good news either. I guess we will just wait and see, continue doing monthly tumor marker tests to track tumor growth, and pray for good results.
I really think one of the hardest things about cancer treatments is the not knowing. Not knowing which chemo to try, not knowing if it is working, not knowing how long I will survive, not knowing whether I am wasting the time I have left by being sick from chemo. ARGGHHHH!!!! It just makes me want to scream!!!!
I want definite answers. Yes or no. Black or white. Not these never ending shades of grey!! I think it just always comes back to faith. Faith that Heavenly Father knows what is best, He can see the big picture, and He knows the end from the beginning. I just wish I could know that also.
My heart has been very heavy these last few days. I received bad news with my last blood test. My tumor markers have risen again, and some other blood work came back indicating that there may be some organ (either heart, lung, or liver) damage. I will be having a Pet-CT scan on Thursday 1-22-09 to see what is going on. We also have Bekah's district spelling Bee that night (she took second place in the school spelling Bee, Yeah Bekah!!!!) Blake also has a church basketball game that night. I hope I don't feel too worn out or sick so I can support my great kids.
I am still struggling emotionally. I fear greatly that my time on the Earth is growing shorter and shorter. I have just been so tired lately, and my pain has increased. I plead with Heavenly Father several times daily that my life will be prolonged, that I will still be able to be here on Earth, to be a wife, mother, sister, daughter and friend a little longer. I still hope for a miracle, that maybe some chemo drug will knock the cancer into remission or even just shrink the tumors.
My faith wavers as these prayers have not been answered. I know I need to align my will with with that of my Heavenly Father, but it sure would be a lot easier if His will was exactly what I wanted. It is difficult to put faith in my Heavenly Father that everything will work out okay if I pass away from cancer. I worry about my dear husband and children. My heart breaks every time I think of leaving them. I can't hardly bear the thought. I try to take comfort that they are mine forever, but I want to be with them today, tomorrow and always. I want to grow old with the love of my life. I always wanted to have a 6th child. I never wanted to be done at 5 children. I miss teaching piano lessons, and serving others. I appreciate the service that is given me, but wish that I could be the one serving. Dan & I have always talked about that we wanted to serve a mission together once our children were grown. All these hopes and wishes and dreams are ones that are never going to come true. I can only hope and try to have faith that I will still have purpose, either in this life or the one beyond. I know the Lord can heal us from our illness and afflictions, as long as we are not appointed unto death. I am beginning to feel that I am indeed appointed unto death. This is a hard thing for me to come to terms with.
My heart is breaking even more tonight because Tyson's, my brother in law, father passed away from brain cancer this evening. A part of me is glad that his father is no longer suffering, and that he is in a better place with loved ones who have passed away before. However, a large part of me grieves for the family and friends left behind. I dread the day that I cause sorrow like this. We all need to remember that this life is but just a small moment, and that after our earthly mission is over, we will be together with our loved ones in joy forever. Easier said than done, believe me. But I am so grateful that I have this knowledge, otherwise there is no way I would be able to get through the days of sadness, grief, and physical suffering.
I apologize once again to my blog readers for another downer post. If I keep on being so down, you may all stop reading. I hope to have a good week with fun and happy things to post.
 Here are a couple of cute photos to make up for the downer posts. I thought everyone would get a laugh out of the pictures of my sister wearing my wig. One day she came over to help, and just for fun she tried on my different wigs. We laughed so hard, and I thought you all would get a kick out of seeing my sister Heather "Wiggin Out". She looks great, huh!!
 I took this picture Christmas morning. The world is so beautiful when it is covered with a pristine layer of white snow. I so enjoy the beauty of the seasons.
 Here are a couple more cute pictures from Disney Land. One day I will get a lot more photos put up on the photos page. My eyes get tired and my head hurts when I spend too much time on the computer.
 My cute 2 little boys, Caleb and Ammon, who always bring me such joy and can always make me smile!
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
It has been a while since I did an update on how I am doing and how my treatments are going. This is an "on" week, where I take Xeloda 3000mg a day for 7 days. I began the 7 days Sunday morning. I asked the Dr. for some better nausea medicine, that way I won't be as sick this week. I had Herceptin and Zometa on Dec. 23rd, so I was pretty tired on Christmas. I have had to increase my pain meds because of increasing pain in my left hip, and also right shoulder. The tissue on my right chest wall and the cancer in my shoulder area seems to be growing. I am having circulation problems in my right arm, and the Dr. think this is because of cancer blocking my lymph nodes on my right arm. My hand and arm are purple sometimes, and I have pins and needles and pain in my hand and arm.
I am always very fatigued, and will take long naps during the day. I feel like I am just missing life as I sleep the day away. I hate feeling tired, and wish I had more energy.
I also have been having localized pain in my head, as well as occasional vision problems. I am holding out hope that this is just from damage from my original brain tumor, and not a new one. I had a brain MRI Monday night at 9:30p.m. I will be anxious for the results, and hope that I get good news. So, that is what has been going on, and I will post once we get the results from the brain MRI.
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.
 Todays date is June 19, 2008.
I already spent hours here at the hospital on Tuesday, but what a joy, I get to have the pleasure of spending another exciting day at the hospital.
Day of tests, here I come.
I decided to keep a journal of the days events so here we go.
This morning at 7:00 a.m. my alarm went off. I just barely fell asleep at 4:00 a.m. So I am starting the day on only 3 hours of sleep. Not good.
It is time to start "bowel prepping" for my CT scan today.
I open the fridge and see the two, seemingly HUGE bottles of Berry Smoothie Barium Sulfate. They might as well change the name to "Barfium" sulfate. Two 450 ml (appx. 30 fl oz.) bottles of thick, gag making, stomach turning, foul tasting fun.
Honestly, I think the hardest thing I have had to do since having cancer is drink bottles of nasty stuff for tests. It is SO HARD to force yourself to drink these things.
 can you see how thick and yucky this stuff looks?
7:05 a.m.
I have poured 8 ounces of this delicious drink into a cup. I stare at it for a minute or two, dreading having to drink it. I can already taste it. I want to gag just LOOKING at it.
I plug my nose, tip my head back and try to chug the beverage of the day, yet I just can't get it down. As soon as I swallow, it just wants to come back up. I got half of the glass down I tell myself, mind over matter, it is just a smoothie. But I just can't seem to trick my gag reflex.
7:10 a.m.
Finished with the first glass. I rinse my mouth and gargle to try to get the thick coating out of my mouth. Only 3 more glasses to go.
I am SO going to buy myself a box of chocolates for a reward for having to do this.
I set an alarm for 8:45 a.m. when it will be time for the second glass.
8:45 a.m.
I know I have to drink another glass of this stuff. Can't do it quite yet.
8:55 a.m.
Have to drink it. Piano student will be here any minute.
8:57 a.m.
Okay, enough procrastination. I HAVE to drink this NOW.
Chug, chug, chug,. Whoops, it's coming back up. Hold my hands over my mouth trying to keep it down. Can't quite. I loose some of it in the bathroom sink. I have about an ounce of this dose left to drink. Figure if I drink it, it will come back up, so why torture myself. Dump the rest down the sink. I rinse my mouth and run downstairs to teach piano.
10:00 a.m.
I just got done teaching 2 piano lessons, and my 10:00 student is here. I don't have time to be wishy washy and take 10 minutes to drink this dose. So I gulp it down, trying hard not to gag while my piano student is sitting in the other room. It actually went down pretty easy.
10:05 a.m.
My stomach is gurgling and hurts. It SO wants to expel the foul contents that are in there.
10:40 a.m.
I finish teaching lessons. My mom is at my house, ready to take me to the hospital. Ready, set, go. I give all of my adorable children hugs and kisses goodbye. The worst is almost over, I only have one more big glass to drink.
11:00 a.m.
On the way to the hospital. We stop at a gas station so I can buy a bottle of water so I can rinse and gargle after drinking my prep. They had these cutest little breast cancer Chevron cars, and my mom bought me one for a prize if I am brave today.
11:05 a.m.
I drink the last dose of barium sulfate. I drink all of the bottle except for the last inch. I somewhat guiltily throw it away. I figure that cheating and not drinking a little bit of it will be okay. I should have saved it for Dan so he can have the pleasure of sampling what I had to drink.
 This is a picture of a CT Machine. I don't know the actual name of it, but for those of you who have been lucky enough to never needed one of these tests, I thought I would show you what they look like.
11:30 a.m.
We arrive at the hospital. I get checked in at Radiology. They take me back and I get changed into scrubs. A nurse escorts me back to the CT machine, and hands me another glass of Barium Sulfate. This time it was luke warm. Hard to drink it with an audience, don't want to gag and retch. I ask for a glass of water so I can rinse and spit after drinking. Got it down! NOW the worst is over.
The nurse starts an IV so they can inject me with some dye. I climb on a narrow little tray that doesn't seem like it is sturdy enough to hold me. At least they give me a pillow for my head, and a wedge for my legs.
They do the first scans, which only take a couple of minutes. The tech then injects me with the contrast. When this goes into your system it feels like you are standing in front of a furnace. A wave of intense heat radiates from my head to my fingers and toes. Very uncomfortable, and I have an giant wave of nausea. Hope I don't loose it!!!!
11:50 a.m.
All done with the CT scan. A tech from Nuclear Med comes to inject me with some radioactive dye to prep for the bone scan. Now why couldn't they just inject me with something for the CT scan instead of having to drink that nasty stuff?
11:55 a.m.-1:00 p.m
Now that I have been injected with a radioactive tracer something in my blood, we have to wait about 3 hours for it to travel to my bones before the actual scan can be done.
So, I get a break from tests for a little while. My mom takes me to lunch at TGI fridays. It felt so good to get something other than Barium sulfate in my stomach. By the time we are done eating, I am in the bathroom sick. Ah well..
1:15-2:45 p.m.
We have time to go to the mall. What a bonus!!!! I even got my box of chocolate from Sees. I spent more time in the bathroom at the mall than I did shopping, but at least I have my chocolate to enjoy tomorrow once my stomach *hopefully* feels better.  3:00 p.m.
Time for my bone scan. This takes about 30 minutes. They scan to check for tumors in the bones. I LOVE the techs at NucMed. They are the sweetest, kindest, best employees in the whole hospital. ;o)
You lay on a table and this big machine scans your bones from head to toe. I have been injected with some kind of nuclear tracer. It will make "hot spots" show what is going on. All I know is that it is a heck of a lot easier to just be injected with something instead of having to drink something. And then to top it all off, I read online that sometimes if you have had barium recently, that it can mess up the results of the bone scan. What I read said that I should have had the bone scan before the CT scan, but it is too late now. I am not redoing either of those tests.
3:40 p.m.
All done!!!!!!!! Easy!
My sister in law Katie had a baby yesterday, so I took advantage of the fact that we were already at the hospital and went to visit. Her baby is ADORABLE!!!! I love holding new born babies. Her skin was so soft, and she made the cutest noises and pulled the cutest faces while she was sleeping. A perfect end to the day.
5:30 p.m.
We make it home, after my mom dropped me off at Dan's work so he could drive me home. I am greeted with hugs and kisses. I insist that I am radioactive so the kids have to stay away and let me rest tonight.
Now I just have to wait to the doctor and get results. The waiting is almost as hard as drinking Barium Sulfate.
So, GREAT NEWS! We got the results from my Pet-Ct scan, and things are looking good! The cancer has shrunk remarkably and is no longer metabollically active. There is still some way to go in getting the cancer shrunk all the way down, but my response to the chemo has been very good! The Doc says as long as things keep progressing at the same rate, I will only have 1-2 more months of chemo. I still have a long way to go before I am done with all of my treatment (I still have to have a mastectomy, and 5-6 weeks of daily radiation) but the progress is great.
After I finish Chemo (Taxol & Herceptin) I will still have to be on Herceptin the rest of my life (or until the cancer starts growing again). I have read a lot about this relatively new treatment, and based on what I have read it keeps the cancer from growing an average of 7-21 months, and has limited side effects. I.e. it doesn't cause hair loss or nausea. If you are intrested you can read more about herceptin on the following website: www.herceptin.com.
All in all, I am doing pretty good. I have good days and bad, but I am grateful for the good times, and grateful that there is treatment out there that can keep me alive. It has been a "cool" summer without hair, glad I don't have to spend time messing with hair when I feel lousy. My eyelashes and eyebrows are almost gone, but thank heavens for eyebrow pencils and magnascopic mascara!
Thanks everyone for all of your prayers and well wishes! It makes all the difference!!!!
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