I had another bad week from Chemo this week. I came home and crashed Tuesday after chemo, woke up sick in the middle of the night again, and the days of nausea, fatigue, fever and chills, diarrhea, stomach aches, body aches, and no appetite began again. I spent Wednesday through Saturday sick in bed. I finally was able to eat a little chicken noodle soup on Saturday, and today I have moved from bed to the family room recliner. I have been able to eat little bits of food today. I am still really weak and don't have any energy. I tried to get up and get ready for church this morning, but the exertion almost made me pass out.
When we went to chemo on Tuesday, we asked the doctor about my bad reaction to chemo. He seemed perplexed by my response. He told us that the fever and chills may be from a the volume of cancer cells dying off, but this chemo usually has a low rate of the other side effects I had experienced. We were kind of befuddled by this, because all of the side effects I had experience were listed on the paperwork he gave me on Gemzar. I don't know if I am sick from Chemo, sick from cancer, or sick from the cancer responding to the chemo. All I know is I am sick of being sick.
Once again, we couldn't get through it without all of the daily help we receive. We appreciate the meals, help with the kids, small treats, friends peeking in to check on me.
Also, I smile every day when more and more info comes in about the "Race 4 Amber" that is being planned by our friends and neighbors. It amazes me how many people are donating time, money, prizes, to make this a successful event. I am amazed by the army of people who care for our family, and who are working so hard to make such a wonderful event for us. If you haven't read about it yet, full details are on the homepage: www.amberchase.weebly.com
Date: Saturday November 1, 2008 (You all know you'll have Halloween candy to work off) Is either a 1 mile or 5k.
Time: 10:00 am. Race is scheduled to start at 10, so come early and register.
Where: Perry Park 2450 West 900 South, Perry, UT
There will be auctions and prizes, including pink Race 4 Amber bracelets for the first 200 registered, and prize for the "pinkiest" person.
Tuesday Oct. 14th I started the new chemo cocktail of Herceptin, Zometa, and Gemzar. I was at the hospital for 5 1/2 hours on Tuesday. The Gemzar infusion takes 1 1/2 hours, the Zometa takes 45 minutes, and Herceptin takes about 30 minutes. A lot of the time is spent waiting to see the doctor, waiting for the doc to mix your meds, waiting for the nurse to hook up your IV, waiting for the nurse to switch drugs etc.
Everything went well with the infusion. I was really tired when I got home and fell asleep for a couple of hours. I woke up about 10pm with chills and horrible stomach cramps. I spent the night fevered, chilled, shaking, and in the bathroom. This continued through Thursday. Finally by Friday the fever and chills were gone, but I still couldn't eat anything, and was relying heavily on nausea meds. Thankfully family members took all of my kids so I just had to take care of myself (lay in bed and wish that I could die) and no one else. From everything I have been able to read online about Gemzar, this reaction usually only happens the first time, and then subsuquent treatments are a lot more mild. I think the new poison is just really hard on your body the first time. Today, I am still really weak and tired, but I actually was able to eat a banana!
If I get this sick every week, there is no way that I can do this chemo. I have to weigh quality of life versus quanitity of life. I hope that this week will be better. There is a gal who goes every Tuesday like me and only has Gemzar, and she said she is a little achey and flu like only that night and the next day. I think I can handle that, just not the 4 days of sick.
As I was laying in bed this morning, Caleb asked me when I was going to be done with chemo. I told him I didn't know, but I hoped I wouldn't have to be on it too long, because it was boring laying around and being sick all the time. He responded, "You are a boring mom right now. I like it better when you are a fun mom." He made me laugh and feel sad at the same time. I hope I can still be a "fun" mom even on chemo.
Because of my trials and my attitude and faith, I was asked a couple of weeks ago speak for 10-12 minutes in Stake Conference. (Stake Conference is a church meeting of all of the different wards, or congregations, in the area) I studied and prayed and read, and prayed some more to prepare ths talk. I was so nervous to speak in front of so many people. I don't mind communicating by written word, but I get quite nervous speaking in front of large groups.
Well, I was the last speaker except for the Stake President, and the meeting had run long. According to the agenda, I had no time to speak. The Stake Pres. leaned over and asked me to be brief. So after all this preparation, I ended up only speaking for about 2 minutes, and basically shared a scripture, a quote, and my testimony. I was told by a lot of people how wonderful I did, but I felt a little sad that I wasn't abble to give more of my talk. Therefore, for all of you who were there and only got to hear a small portion of my talk, and for all of you who weren't there, I am posting my entire talk here on my blog. Thank you for reading!!! I learned so much more prearting this talk than I anyone else could possibly learn from hearing/reading it.
In the pre-existence when Heavenly Father presented the plan of salvation, the scriptures tell us that we "shouted for joy." We were told that this mortal life would be a time of learning and growth, and that we would experience trials and adversity, but also happiness and joy.
M. Russell Ballard said:
We mortals have a limited view of life from the eternal perspective. But if we know and understand Heavenly Father’s plan, we realize that dealing with adversity is one of the chief ways we are tested. Our faith in our Heavenly Father and his beloved Son, Jesus Christ, is the source of inner strength. Through faith we can find peace, comfort, and the courage to endure. As we trust in God and his plan for our happiness with all our hearts and lean not unto our own understanding (see Prov. 3:5), hope is born. Hope grows out of faith and gives meaning and purpose to all we do. It can give us comfort in the face of adversity, strength in times of trial, and peace when we have reason for doubt or anguish.
As part of Heavenly Father's plan, all people experience adversity during their lifetime. Trials, disappointments, sadness, sickness, and heartache are a difficult part of life, but with the help of the Lord they can lead to spiritual growth, refinement, and progress.
Each person's success and happiness, both now and in the eternities, depend largely on his or her responses to the difficulties of life.
Adversity comes from different sources. Trials may come as a consequence of sins. These trials can be avoided through righteous living. Other trials are simply a natural part of life and may come at times when people are living righteously. For example, people may experience trials in times of sickness or at the death of loved ones. Adversity may sometimes come because of others' poor choices and hurtful words and actions. Suffering may also come through a loving Heavenly Father as a tutoring experience.
When some people face adversity, they complain and become bitter. They ask questions like "Why does this have to happen to me? Why do I have to suffer this now? What have I done to deserve this?" Such questions can deprive them of the experiences the Lord wants them to receive. Rather than responding in this way, people should consider asking questions such as, "What am I to do? What am I to learn from this experience? What am I to change? Whom am I to help? How can I remember my many blessings in times of trial?"
In May of 2007 I was diagnosed with a rare form of aggressive breast cancer. It was stage 4, which is almost always terminal. It was treatable, but not curable. Prior to this our lives were very comfortable. I enjoyed a very lovable strong marriage, 5 wonderful kids, we had a nice home, secure employment. We were trying our best to do all the right things, going to church, paying tithing, serving in callings, going to the temple, doing family prayer, scripture study, and family home evening. Even though we were doing these things, it didn't make us immune from this big trial. However, because we were trying to do what is right, and living close to the spirit, we were able to be spiritually prepared and strengthened as well as comforted and lifted up during it. I was able to endure things I never would have thought I could endure. I received so much strength and peace even during the hardest times.
People say to me all the time: How do you do it? I couldn't do what you are doing?
The answer is I can't do it, at least not alone. I rely on my Savior. We are told about the Savior in Alma 7:11-12
11. And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.
Jesus has suffered all things so he can help us through our trials. However, we need to remember his invitation:
"Come unto me, all ye that labour and are heavy laden, and I will give you rest.
"Take my yoke upon you, and learn of me; for I am meek and lowly in heart: and ye shall find rest unto your souls.
"For my yoke is easy, and my burden is light"
(Matthew 11:28–30)
Note that this doesn't say come unto me, and I will do it for you. He is inviting us to share our burden with him, and he will help us carry it.
A favorite scripture story that has brought me and my family great comfort. through our battle with cancer is the people of Alma, who were in bondage to wicked people. They prayed to be set free, but the answer they got from the Lord was that he would eventually deliver them, but in the meantime he would ease their burdens so they couldn't feel them upon their backs.
In our life while I have been battling cancer, this has been evident in our life. The Lord has not seen fit to free me from my oppressor, but he has made it so we have not even felt the burden. We have received countless hours of kindness and serving, help with our kids, meals brought in, house cleaning, yard work, gifts, and treats, that it has lifted our burden, where we have not even been able to feel it upon our backs. How grateful we are for all of the selfless service we have received, where needs that have been met when we haven't even asked for help. If we didn't receive all of this service, the burden would have been unbearable.
Sometimes in our lives, we become comfortable in our trials. We think we have it all figured out, and maybe we aren't relying on our Savior as much as we should be. I found myself a little guilty of this during the last summer. I had finished all of my aggressive cancer treatments in February, and was just on every 3 week maintenance cancer therapy. My cancer was stable, and I believed the Doctor when he said that I may be able to stay stable for years. He had also warned us that because my cancer was such an aggressive form that it could come back as fast as it shrunk. I received a blessing in April and I was told that I would have a season of stable disease, even a remission, and to use that time to enjoy my family and children. In my mind I was hoping that it would be "season" as measured by the lord's time or a really long time, and not just a literal "season" like summer. In this blessing I was also told to be patient because I still had things to learn, and also that sometimes we have trials so others can learn from them.
I had myself convinced that like the woman in the new testament who had an issue of blood, that she was able to be healed just by touching the hem of Jesus' robe. Her faith had made her whole. I wanted to be like this woman, and have enough faith so I could be healed, and not have a reoccurance of my cancer.
We enjoyed a fun summer, going on vacations, and spending precious time together as a family. Imagine my distress when towards the end of July, I had a blood test that had bad news. It looked like my cancer was growing again. I had scans that confirmed that the cancer was actively growing, and that I had new tumors growing. If that wasn't bad enough, I had a brain MRI in early August where a brain tumor was found. Needless to say, my family and I were devastated. I would have to begin weekly chemotherapy again, as well as radiation for the brain tumor.
For a while, I felt lost, I didn't know what to do. I didn't know how to refocus my faith. I had put my faith in being healed, and I was a little discouraged. One day when I was feeling very sad the words of the hymn "Come come ye saints" came powerfully in my mind:
Why should we mourn and think our lot is hard?
Tis not so, all is right
Why should we think to earn a great reward
If we now shun the fight?
Gird up your loins; fresh courage take,
Our God will never us forsake;
And soon we'll have this tale to tell
All is well! All is well!
How grateful I was for this tender mercy from the Lord. I knew that Heavenly Father was aware of me, He knew I was struggling, and these words of this hymn was just what I needed at that point to help me continue to be faithful.
Just this last week I experienced another tender mercy. I mentioned earlier how I struggled with trying to be like the woman who touched the hem of Jesus' garment, and her faith made her whole. I faulted myself for not having enough faith to be healed. While I was preparing this talk, I came upon the answer to why my faith has not made me whole or healed me. I found a quote by Dallin H. Oaks that gave me so much comfort. I think this quote could bring comfort and peace to any of us that have trials or burdens. He said, "Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a healing cures our illness or lifts our burden. But sometimes we are healed by being given strength or understanding or patience to bear the burdens placed upon us."
We can find many examples of people being faithful through adversity. Christ is the ultimate example, Joseph Smith, Pioneers, numerous examples in the scriptures, and examples all around us every day. Robert D Hales told us, "Often we do not know what we can endure until after a trial of our faith. We are also taught by the Lord that we will never be tested beyond that which we can endure."
A few weeks ago, i was struggling a little bit with my faith and endurance. I was fearful of my cancer, scared of dying and of leaving my family. The chemotherapy that I have been on was not working, and I was fearful of trying to decide which chemo to do next, I was researching different chemo agents, and the success rate of different chemo combos was very discouraging. My dear husband had me read a talk by Dalin H Oaks called "He heals the heavy laden" In this talk he recounted the following scripture story in Mark 4:37-40 and the hymn "master the tempest is raging"
7 And there arose a great storm of wind, and the waves beat into the ship, so that it was now full.
38 And he was in the hinder part of the ship, asleep on a pillow: and they awake him, and say unto him, Master, carest thou not that we perish?
39 And he arose, and rebuked the wind, and said unto the sea, aPeace, be still. And the wind ceased, and there was a great bcalm.
40 And he said unto them, Why are ye so afearful? how is it that ye have no faith?
I was reminded after reading this that we can't have faith and fear at the same time. If we put our faith in Jesus, there is no need to fear.
Elder Oaks also made a beautiful promise. He said, "The Healing power of the Lord Jesus Christ-whether it removes our burdens or strengthens us to endure and live with them is available for every affliction in mortality."
I am so grateful for the gospel, and for the knowledge I have of my Savior. I know I would not be able to bear my trials without him. Whenever I struggle it is because I have not relied on the Savior as much as I should have. I testify that if we follow the counsel of our church leaders, and put our faith in our Savior and his promises, that we can endure any adversity that we may have in our lives. I testify that our Savior lives, and that he loves us.
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.
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.
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