I know it has been a really long time since I have last blogged. I have just been unmotivated to get on the computer. I spend my limited energy with my family, and whenever I have a chance to sit for a minute, I fall asleep. I have been really unmotivated and have felt uninspired. I just don't have a lot to say right now.
Life has been really good the last couple of weeks. We had a wonderful time in San Diego. It was such a beautiful city, and we made so many great memories. I wanted to capture each memory so we can remember it all, so I took over 500 pictures.
My last test results were bad again. The chemo isn't working, and it kind of feels like I am out of options, and just tired of the fight. It has been a month since my last chemo treatment, and I have been feeling so much better with all of the toxic chemo elements in my body. I have a new home health care team, and they have redone all of my pain medications, and added new prescriptions to help with the different cancer symptoms I have. It has made a huge difference in the quality of life I am experiencing. Most days are really good days, and I am able to do a lot of things with my kids. I do have days where I crash, and spend the entire day sleeping, however those are only after I have overdone it on good days.
So, that is what has been going on lately with me. We are just enjoying spending time with family and friends, and enjoying every minute! And one of these days when I am feeling more motivated, I will share more info about our recent trip to San Diego and put some pictures up on the site. To all of those of you who read this, Thank you always for all of your love and concern, prayers and support!!!!
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!
I can't believe how long it has been since I last wrote something for my blog. I just don't really feel like I have anything inspiring or interesting to write about. I completed my week of chemo, and spent the next couple of days still feeling really yucky. I still feel SO tired all the time. My pain is getting worse in my hip and shoulder. My mood lately would best be described as BLAH.....
I can't wait for sunny spring days. The sun makes me feel so much better.
I am supposed to start another week of chemo pills tomorrow. I am going to put it off until Monday night because I bought tickets to the Utah Jazz game on Monday. Our family is really excited for it.
I just don't have a lot to report about what has been going on lately. All I do is rest, feel sick, rest, sleep, feel sick, and then sleep some more. Very Blah life.
I went out to lunch and dinner on Friday. I went to lunch with my mom and sisters, and 5 kids under the age of 3. That was fun, but stressful. The kids got bored and were doing a choo-choo train around the restaurant. We did get free Asphalt Pie because it is my Mom and Sisters birthday this week.
Then Dan and I went out to dinner with some friends on Friday night which was really fun, except I got really tired. I can't eat much, but the company is great, it's always fun to talk and share some laughs with good friends. Plus I have a fridge full of leftovers!!
Saturday night we went to my Mom's house for her birthday. It felt great to finally get out of the house after almost 2 weeks of being home bound. I even missed church last Sunday. I am hoping I make it there tomorrow morning.
So there it is, my very blah update. Next week should be another blah week with having chemo pills and I have to go in for IV chemo again on Tuesday. That's why I have to live it up this weekend and Monday, because come Tuesday, I'm going to be sick again..... blah blah blah......
I began my chemo pills again last night after having several weeks off. It has been 4 weeks since I have had IV chemo either. It has felt so wonderful to be able to eat and enjoy food, enjoy family events, go on vacation, and have a little more energy while I have had my little chemo break.
Having metastatic cancer causes so many problems by itself; pain, fatigue, stomach issues etc. When you add chemo, you just add a bunch of other problems. During my chemo break I was able to do so many great family things like my sister in law's wedding, going out to dinner as a family, going to the Draper temple open house, and of course our vacation to St. Maartin.
As much as I have enjoyed my weeks off from chemo, it is time to start the fight again. There was a part of me that really didn't want to start chemo again. The chemos that I am on only has a 20% chance of slowing the cancer. I realize that if I don't take chemo, I have a 0% chance. As difficult as it is to suffer the side effects, I feel like I have to TRY to do my part in fighting this disease. I need to know that I did my part to be here for as long as possible for my family.
I am being a glutton for punishment this week. Not only am I doing my oral chemo pills, I am going in for IV chemo today. I figure if I am going to be sick, I may as well double up and be really sick all at once. Plus I had to have an infected ingrown toenail removed yesterday. Due to chemo my nails grow all wonky, just another lovely side effect of my cancer treatments.
Needless to say, I am going to be flat in bed the rest of the week. My sister in law brought me some movies including the Anne of Green Gables movie series. So, I am going to have some great entertainment! I am always so grateful for all of the thoughtfulness of friends and family. My family and I am taken such good care of. I am always so grateful for the meals brought in, and thankful for the friends who take my little boys every afternoon so I can nap. If we weren't taken such good care of, I know I wouldn't have the energy to fight!
First of all, i want to thank all of my blog readers for your love and support. I appreciate your words of encouragement and support, and for not looking down on me because I am weak sometimes. Thank you!!
I was archiving my blog this morning, and I came across a post from last January very similar to my last post. There just must be something about this time of year that triggers feelings of despair and sadness. I am still struggling emotionally right now, but I am trying to refocus and change my perspective. I need to remind myself that if you look for negative, you find it, but if you look for positive, you will find that too. I have been focusing too much on the bad things about cancer, and have forgotten all of the good things. For example, I hate that I can't cook and clean, but I am so grateful for the kindness of others cooking and cleaning for me. See, it is all in the perspective. I am going to try harder to focus on the good and not the bad, and hope that I can find strength and faith to deal with cancer and all of the hard things that go along with it.
I am off to the oncologist today. I didn't cancel my appointment . I will have herceptin and Zometa today. I should have been taking Xeloda this week, but I haven't been able to bring myself to take it. I am having a hard enough time dealing with life right now without adding all of the side effects and misery of one more thing.
We took the kids to Chuck E. Cheeses last night for a fun family home evening activity. They all had a really good time (even though it exhausted me). Another good thing is American Idol starts tonight!!!! Yippeee!!! See, I can still enjoy life even though I have cancer. I just need to remember to take the time to enjoy the little things, and quit feeling sorry for myself and focusing on all of the things I can't do.
Let me just start this post by saying I am sick of cancer. I am sick of chemo. And I am sick of being sick. Even though this last week was an off chemo week, I was still very tired all week, and wasn't able to do much. I am really struggling emotionally, I have feelings of depression, anger, and hopelessness. I wish that I didn't have cancer, and that I could just have a normal life. All I have ever wanted to do is be a wife and mother, serve in church and serve others, share my talents etc. Now all I do is lay around sick all the time. I struggle with feeling bitter about what my life is now. Then I feel guilty for feeling that way. Having cancer is a never ending roller coaster. Sometimes I feel up, and hopeful, but then there are the low valleys that are dark and full of despair. Part of me really wants to just quit chemo and be done with it. I hate taking the chemo, and being sick, and I don't even know if it is working. I wish I could see some improvement, but all of my cancer areas are the same. I don't know if the chemo is buying me more time, or if it is just destroying the quality of the time I have left. It is so frustrating and agonizing.
The highlight of my week was on Thursday when Dan & I were able to go out to dinner with another couple who are battling IBC. Janeal was diagnosed with IBC 6 months ago, and goes to the same oncologist as me. We spent 4 and half hours with them, laughing, crying, and sharing our experiences. What a blessing it was to spend time with people who know EXACTLY what we are going through. They have so many of the same thoughts, fears, worries, struggles etc. I am so grateful for the miracle that brought us together. I hope this is okay with Janeal, but I thought I would share her website: www.jsfight.blogspot.com She is amazing, and a lot stronger than I am. She is also battling Thyroid cancer at the same time. She is younger like me, and has 3 small children. Her and her husband Bruce are just amazing.
Anyway, I am sorry to be so down, but I need to be honest. This blog is my journal of my battle with cancer, and it needs to be real and honest. So after I am gone, my family can have an accurate knowledge of me and my battle with cancer. I'm not always strong and faithful, I have doubts and anger, and I need to be honest in sharing that. Thank you for bearing with me, reading my ramblings, and hopefully you all won't think less of me after reading this.
 I received this great plaque from Sharon R. and Michelle S. I saw this saying at Sharon's house and loved it, and she and Michelle so kindly made one for me. It is so appropriate, and a reminder that we can do things that are hard, even if they seem impossible!
We had an interesting conversation with the doctor Wednesday. I pitched my idea of discontinuing the Gemzar, and then taking the rest of November and December off from chemo. Not a good idea, I guess. Dr. H. was okay with me quitting the Gemzar because of the horrible side effects, but if I were to take 2 months off from systemic chemo, the cancer would most likely spread and be harder to get under control.
So, the new plan of action is to try an oral chemo called Xeloda. From what I had read about this drug, I was certain that this was one drug I DID NOT want to take. The side effects are pretty bad and numerous. Besides the standard nausea, vomiting, diarrhea, mouth sores, stomach aches, flu like symptoms, body aches, bone aches, muscle aches, stomach cramps etc. it has a nasty side effect called Hand and Foot syndrome. The palms of your hands and the bottoms of your feet become red, rashy, burning, itching, blistered, and raw. There are steps you can take to reduce this, like using certain creams at night and wearing specials socks and gloves. But still, come on, I'm going to willingly swallow pills that cause these side effects??? Really, though, what choice do I really have? We asked Dr. H. if I didn't do any more chemo how long I would have left and he said 4-6 months, and it wouldn't be pleasant. As the cancer progressed, I would be more miserable than what any chemo could cause. Well, when you put it that way, I guess I will try the chemo.
The good thing about the chemo is it is easy to change doses if the side effects are too bad, and we worked out a compromise where I would take it 1 week on, 1 week off instead of the standard 2 weeks on, 1 week off. Also, there is another chemo pill that usually is prescribed together with Xeloda called Tykerb. But when you add Tykerb, it makes the stomach side effects even worse. The plan is to wait to add the Tykerb until after Christmas. This way I am doing SOMETHING to battle the cancer, without hopefully compromising too much quality of life.
Tykerb is another drug for HER2+ cancer, and it will take the place of Herceptin. It attacks the cancer in a different way than the Herceptin, which is good because it seems like my cancer is either too numerous or no longer receptive to Herceptin like it was at the beginning. I am praying that I have a "miraculous response" to these new chemos like I had at the beginning with the Herceptin and Taxol.
I also had tumor markers blood test done Wednesday. It will be interesting to see what they are. I also had a flu shot, and of course, murphy's law, my arm got all swollen and I have a red inflamed area about 4 inches in diameter, and it hurts and burns and itches. At least I'm not sick from chemo. This side effects of just the Herceptin and Zometa I received is just some bone pain, and tired and no appetite. My red blood counts were also really low, but only .1 higher than what they have to be so insurance will pay for a Procrit (red blood cell production boosting) shot. No wonder I am so tired!
Oh yeah, for those of you wondering about our Las Vegas trip, it was very relaxing. I spent A LOT of time napping, and resting, and we enjoyed a couple of shows, eating at some great restaurants, visiting my Aunt Jan and Uncle Trent, and sleeping. It was really nice to get away with Dan and be able to have time to talk and enjoy each others company.
 These gorgeous flowers sent by my Aunt Jan were waiting for me one week when I got home from Chemo. They cheered me up, and were the most beautiful pink flowers that stayed pretty for a long time. The picture just doesn't do it justice!
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.
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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