I have been asked a couple of times why I am delaying starting aggressive chemo again, even though my Dr. thinks I should. I don't like to complain, but I though maybe if I explained a little more the side effects of chemo, it will be easier to understand why I am willing to risk more cancer growth by delaying.
Right now the side effects of cancer are pretty intense pain in my hip and back, that is managed fairly well with pain medicine. The medicine does make me tired, and I am tired to begin with, and don't have a lot of energy. The pill I take every day, Aromasin, has made my joints in my knees and hands ache and hurt. Because of going into menopause, I now have arthritis in my shoulders and my knees. This showed up on my last scan. So, the biggest challenge right now is pain, which can be managed.
I was so sick, and miserable, and tired when I was on Taxol. The night I had treatment, my hands and feet felt like they were on fire, they would burn. My legs would hurt so bad, I almost couldn't walk. I had such horrible diarrhea that I would literally spend hours in the bathroom. This caused bloody oozing sores on my behind. My stomach had so many cramps, and it hurt so bad. Food tasted bad and metallic. Everything I ate went right through me, my digestive system wasn't working. The nausea was managed with pills that put me to sleep. I got sores all over the inside of my mouth and throat, I had to use a special toothpaste to keep my gums from falling apart. I had sores in my nose. I would curl up into a ball on the bathroom floor and cry I was so miserable. The nerve damage that treatment caused was painful. My hands and feet tingled and burned, like pins and needles. Every step I took felt like I was stepping on needles. This was cumulative, and got worse the longer I was on treatment. My blood counts got so low, I had to have shots to boost them. I was SO TIRED. Some days I hurt all over so bad I couldn't even get out of bed. My memory was shot, I couldn't remember friends names, or even conversations I had with people. I was dizzy all the time, and I couldn't read because it made me too dizzy, and I couldn't track words along the lines on pages. (Those of you who know me, know I LOVE to read, so this was very frustrating). The steroids they gave me made me bloated and swell, and even though I was so tired I couldn't sleep. I was wired and agitated. Not to mention losing my hair, including eyebrows and eyelashes.
The side effects from treatment started to subside after a couple of days, and I usually felt quite a bit better for the 2 days before treatment again, but then it was time to start all over again. I did 17 rounds of this.
So, this is why I am going to wait to start aggressive chemo again. Even though the cancer is active, and growing, and spread to a couple of new spots, I have to weigh the risk of waiting compared to what my quality of life is. There is the risk that the cancer could spread to somewhere else, but I am still on the Herceptin and Zometa, plus Aromasin, and I have faith that those treatments will keep the cancer in check so it doesn't go totally crazy in the next 6 weeks.
The treatment for the disease is sometimes worse than the disease itself. Right now that is the case for me. If the cancer was spreading in my lung, or in my liver or brain, I am sure that I would feel worse, so maybe rushing into treatment again would be the lesser of two evils. But as things stand right now, even though my doctor would prefer that I start aggressive chemo again right now, I choose to wait. Maybe it is foolish, maybe it is tempting fate, but life is too short to be sick like that again. Sometimes it comes down to quality over quantity. I have read too many times about women who restarted chemo, never to be able to stop again. Just in case that is the case for me, I want to enjoy some good quality time with my children and family right now.
To start off, thank you everyone for letting me know that you still check up on me, and enjoy reading my ramblings. I really appreciate all of your support!!!!
I had a really good week. My energy is finally starting to return, and I can actually go a whole day without having to take a nap. Of course, I over-do it for several days in a row, and then I crash for a day or so. I just need to have patience.  We had another birthday in the family last week. Abby turned 8. She wanted a Hannah Montana birthday party. Abby is a very friendly child, and so she invited 24 girls to her party. That was fine with me because I figured only half would come. Um, wrong. We ended up with 18 giggling, crazy, hyper, enthusiastic, energetic girls. It was very fun, but wore me right out. I had hoped for good weather that day, so we could have the party outside, but it was a cold windy day. So, we were stuck inside. Luckily my house was still standing after the party.
I gave a talk in church on Sunday about how hope in Christ can help us to have optimism. I am much more comfortable writing my feelings than speaking in public. I spent hours and hours preparing my talk, and then I just ended up blubbering for 10 minutes. When I sat down after my talk, I couldn't even remember what I had said. Several people told me they enjoyed my talk, though. The gist of my talk was that when times are hard, if we trust in Jesus Christ, we can have hope that everything will work out. All of our trials, and heartaches, are learning experiences. As we go through these trials, if we can have faith, we can receive the help we need to endure our trials well. Sometimes we bring our trials on ourselves, and sometimes they just happen (like getting cancer). That is the purpose of this life. If we never had sorrows or hard times, we wouldn't have joy or appreciate the good times.
I had my cancer treatments again today. It was a really long day at the hospital and I am exhausted. My stomach already is upset, and I feel lousy. But even though that is bad, my sister was kind enough to watch my boys today, my neighbor brought dinner tonight, and a friend is watching the little boys tomorrow so I can rest. And while I was at the hospital today, my house was cleaned top to bottom by another friend. So even though I don't enjoy feeling yucky, I am continually blessed by the help and support from friends and family. I couldn't do it without all of you!!!!!!!!!!!
It has been a couple of weeks since I updated my blog. I didn't know if anyone really ever reads this anymore, but I have been gently scolded by a few people for not posting, so here I am.
It was 11 months ago today that I was diagnosed with cancer. WOW!!! When I was diagnosed, I didn't think I would be here for another spring, yet here I am.
My last cancer treatment of Herceptin and Zometa was 9 days ago. My oncologist is going to do both drugs every time to see if I can't get more pain relief from the bone mets. Dan went with me to my appointment, and told the doctor about my side effects from treatment, so they changed my premeds, and added steroids again. I felt a lot better. I should have complained a long time ago, and had these changes made months ago.
The doctor also adjusted my pain meds, so hopefully my pain can be managed better and I can do more. The only problem with taking stronger pain meds, is they make me even more tired. So I have to decide if I want to be limited in what I can do because of pain, or if I want to be limited in what I do because I am groggy, out of it, and tired. So, I am trying different combos of pain pills at different times of day. The doctor told me that eventually I will get a tolerance for the drugs so they won't make me so out of it.
My hair is growing nicely. It is SOOOOO curly. I look like a poodle. Dan is also growing his hair back. He looks great. I think the guys he works with who are missing hair are jealous that he is growing hair, and they're not.
So there is my update for those who are curious. Thanks for caring!!!!!! (And I mean that sincerely!)
 Here I am holding my certificate of completion from the Radiation Oncology office. It says that I completed my course of radiation. Way cool. I hung it on my fridge like a report card, or a diploma!
 Here are my kids helping celebrate. We had IBC root beer!!!
As I was laying in bed last night, I had a very vivid memory come into my mind. I remembered that night a year ago, when I was surfing the internet trying to figure out what was wrong with my back, leg and knee. I had been having quite a bit of pain, and it was to the point that I couldn't lift 1 year old Ammon. I couldn't walk up the stairs without tons of effort and pain. I had been to see an orthopedic surgeon, and he told me he suspected I had a bulging disc in my back which was pinching on a nerve and causing my pain. A couple of weeks before that I had been to my OBGYN and had asked about my swelling and red breast. He had said that it was probably just scar tissue causing engorgement from milk in the ducts. So I decided to google that, and read about it, and that was when I first stumbled over the term inflammatory breast cancer. I had a sick feeling in the pit of my stomach, and I briefly allowed my mind to wander and imagine what would happen if I indeed had breast cancer. I thought about how hard it would be to go through treatment, and how hard it would be for my family. I told myself not to be silly and worry about something like that, and tried to put the worry out of my mind.
Now here I am, 8 months later, having successfully battled cancer. I just feel like dancing!!!! I am DONE with treatment. My mantra the last 8 months has been, I have to get through chemo, I have to get through surgery, I have to get through radiation. Now here I am, DONE. I got through it!!!!! I don't have this big obstacle to overcome in front of me anymore. I feel like I have finished a marathon. I never thought I would actually be able to do it, but here I am, DONE!!!! Did I mention I'm DONE!!!!!
Now, DONE is a theoretical term. I will have to take a pill daily, and receive an hour and a half IV infusion of Herceptin every 3 weeks, and a 30 minute IV infusion of Zometa monthly for the rest of my life. I will have to do these treatments to keep my cancer stable.
A lot of people have asked, so are you in remission now? The answer is that once you are stage 4 cancer with multiple metastases, there is no remission. No matter how well the treatments work, there are still going to be cancer cells left. My oncologist told me that remission translates to cure in people's minds, and stage 4 cancer is incurable. However it is treatable, with pretty good quality of life. I have a long ways to go to get my energy and strength (AND HAIR!!!!) back. I still have pain where the cancer damaged my bone, and I have a lot of healing to go from radiation. My quality of life is better now than it was a year ago. I hope to continue to get feeling even better, and have this period of "stable disease" (Which is how my onc defines my condition) for months and hopefully years. We have already seen so many miracles, I am sure that we can have a miracle of having no progression of cancer for a long, long, time.
Now all that being said, please know that there is no way in the world that we could've made it through all of this treatment and sickness without all of the help from our family, friends, and people we don't even know. All of the prayers, all of the service, all of the child care, all of the meals, kindnesses more than I can even count, have made it possible to endure our trial. Thank you again. I know I say it a lot, but I mean it. THANK YOU!!!!!!
I'm feeling better emotionally today. Not so down. Yesterday I had a triple dose of Herceptin, so once I finish my LAST 2 DAYS of radiation, I will have a couple weeks off from hospital and doctors visit. It just seems unreal that I am almost done with radiation. Yesterday I had 3 appointments at the hospital: A muga scan (where they make sure my heart is still functioning well enough to continue Herceptin) radiation, then my oncologist visit and herceptin infusion. Makes for a long day! I'm feeling quite tired and a little nauseated tonight. Hopefully it won't last too long. My kids had peanut butter and jelly sandwiches for dinner tonight!
I went to Kathy's funeral on Monday. Something one of the speakers said has really stuck with me and put things into perspective. He said, "Birth is not the beginning, and death is not the end." It was a beautiful uplifting service. I am so glad that Dan was able to go with me. The speakers said over and over how great Rick (Kathy's husband) took such good care of her, and you could say the same thing about Dan.
Today I thought I would share a day in the life of radiation treatment. My appointment is at 6:45 am, so I have to leave between 5:45 and 6:00 depending on the weather. I drive 25 miles to the hospital, park, walk in, go to the radiation oncology office, and change into a hospital gown. Then because I am the first appointment of the day, the tech usually takes me right back to the machine. I lay on this hard table with my arms in these brackets, and this big machine, kind of like an x-ray machine, moves above and radiates the different treatment areas. They are radiating from my collar bone to bottom of rib cage, and from my sternum to armpit. The treatment takes about 15 minutes. Then I change and drive home. The whole process takes about 2 hours. I do this Monday-Friday, for 6 weeks.
So far so good, no real side effects to report. I am a little stiff and sore from laying on that hard table, and having my arms stretched up hurts the muscles from the mastectomy side, but that is all. The Dr. said it would be a couple of weeks before I should feel any side effects.
I can't believe Christmas is in 2 weeks. I haven't wrapped any presents or done any shopping. It feels really weird. At least it snowed on Friday, so it FEELS and LOOKS like Christmas. I love listening to Christmas music and enjoying my festive house. It has been nice to just enjoy the Christmas season without all of the stress of running around everywhere.
I need to share one more experience that happened last week.
A group of wonderful women, angels, came over to my house on Thursday to watch my 2 little ones and do "a little cleaning." They arranged for me to go shopping with friends and out to lunch. It was so fun to get out of the house with the girls and laugh and shop.
Then, when I got home, my house had been totally cleaned, DEEP cleaned, from top to bottom. All of these projects that probably haven't been done 6 months, they took care of in the 5 hours I was gone. Bathrooms scrubbed, fridge inside and out cleaned, floors cleaned, blinds washed, vacuumed all of the corners and behind furniture. Windows washed, furniture dusted, front porch swept, walls washed, kids rooms cleaned and organized and beds made, laundry washed and folded, dinner prepared.... AMAZING!!! I just walked around all the house and cried after they left. The house looked SO GOOD!!!!! Then they had someone come and clean the carpets on Friday. Words can not express how grateful we are. I have been so discouraged because I can't do deep cleaning. After being tired and sick and sore, I am physically unable to do so many things I would like to do. It is just amazing the service that was shown to me and my family. (Now if I can only get my kids to keep it clean for longer than an hour!!!!!)
We are truly blessed. I am so grateful for people who listen to the spirit, and are so willing to serve and follow Christ's example.
Well, I had my check film appointment today at the radiation oncologists. They drew all over me again with red permanent marker, and took more x-rays and pictures with a digital camera for my chart, and made sure everything was ready to start radiating. They will be radiating a large area, and even through my back through to the chest.
I never thought in my life that I would allow pictures to be taken of me topless, but now I've done it twice. I think when we send out Christmas cards this year I'll write in them, "Amber went a little crazy this year. She shaved her head, started taking steroids along with a lot of other drugs, had a boob job, got 5 tattoos, and then posed for pictures topless." LOL!!! Oh my what an exciting year I've had!!!!!
When I saw my oncologist yesterday, he said again "we have seen a miraculous response to your treatment.' Thank you everyone for all of your prayers and fasting. I know we have seen many miracles and blessings from the Lord throughout this journey.  I just had to share this picture of our family. We had a church party on Saturday called a Night in Bethlehem, where they decorated the gym of the church to look like Bethlehem. Everyone came dressed in "biblical attire" and they had a live nativity. It was so wonderful to go and be around everyone else wearing head scarves and turbans. I felt right at home!
I am really tired out today. What with spending about 6 hours at the hospital yesterday, 3 hours there today, and then a busy weekend, I am about out of energy. I can't wait to just hang out with my two little boys tomorrow.
I had my simulation today at the Radiation Oncology office. The hardest part was stretching my arm up in the breast board while they did all of the calculating angles and such. Plus it hurt my back and hip to lay on that hard board for so long. I couldn't believe how much those tattoos hurt. (I got 5 little dots) I don't know how people can stand to get those tattoos all over their bodies. OUCH!!!!
My first treatment will be next week on December 5th. I will go in at 6:45 am. It is early, but at least I'll be able to go and be back before Dan has to go to work so I won't have to find someone to watch the kids.
Luckily a sweet neighbor is bringing in dinner tonight. I am going to go crash for the night.
 Look, my hair is really growing!! You can't see my scalp anymore, and I can spike it. Only problem is it is mostly a grayish-brown color. I'll probably dye it once it gets a couple inches long. Grow baby, grow!
Sorry I haven't posted an update. I have been feeling great and been busy doing life as normal, and I haven't taken time to post.
I hope everyone had a wonderful Thanksgiving. Ours was great!!!! Everything tasted so yummy and I was so glad that I was able to eat without getting sick. Dan and I went out shopping the day after Thanksgiving. We didn't go out until 8 am, and it was fun to shop and get some good deals.
Over the weekend we got the house all decked out for the holidays. Lights everywhere inside and out. Abby (our 7 year old) said that she thinks we have the best looking house anywhere. The magic is so fun with little kids. At first I thought I didn't want to bother with all of the work of getting all of the decorations out, but I am so glad that we did. It really puts you in the Christmas spirit so see all of the twinkling lights and the nativity, and the tree, and garlands. So beautiful!
We went with my family down to Salt Lake City to see the lights at Temple Square. It was so pretty. My favorite part is when you go in the visitors center and walk up the ramp and see the statue of Christ. It was hard not thinking about the possibility that I will be making that journey after this life sooner rather than later. It was wonderful to think about being in His presence again. I love this time of year when we celebrate Jesus' birth and life and mission.
Well I went to visit the radiation Oncologist today. He said I will need about 25 treatments. So once a day for 5 weeks. It is better than 6 weeks! He won't be doing radiation to my hip and pelvis at this time, but he will try to extend the treatment field to radiate my sternum (which had cancer) I go in for my simulation and tattoos tomorrow morning.
I am really tired today after being so busy for so many days. My brain thinks I want to and can do everything, but my body says "Slow down!!! I'm exhausted." It is hard to find a balance. I can't wait until I am done with treatment, and life can go back to normal.
Imagine the title being said by frankenstein once he completed making his stitched together, haphazard monster. I feel like I have been cut apart and then put back together. I was cut from my sternum clear to under my arm for the mastectomy, and then 3 incisions on my tummy for the hysterectomy. Just in time for Halloween!
Yes, I am still alive, and recovering from surgery. I survived!!!! I feel a little like a spoiled child with all the presents I have received. Thank you everyone for all of your flowers and balloons and gifts and treats. I have been just giddy getting presents and flowers almost every single day since surgery. Thank you!!! Once I get feeling a little bit better, I will load some pictures of all the pretty flowers.
So anyway, here is a breakdown of all the fun I have been having the last 12 days. I had a laprascopic hysterectomy and modified radical mastectomy. I was swollen like a balloon, and black and blue from collar bone to pelvic bone. The first couple of days I couldn't even feed myself! I spent 2 nights in the hospital (on the same floor as all of the new moms and babies...boy I was sure glad I wasn't going to have to take care of a baby when I got home...every other time I have spent the night at the hospital it was when I had had a baby) It hurt so bad to get up and I was pretty miserable for a while there.
For the first couple days while I was home the kids stayed at various family members homes so I could just rest and sleep. That was heavenly! Our house was so quiet. I lived in my recliner. I am now up and moving around more, and I didn't even have to take any pain medicine today. Ask me a week ago, and I probably would have told you that I would never be off the pain meds. I even went and voted today!!!!
On another note, I have declared independence from my hats and scarves and wigs. If you see me out and about, you will probably encounter me with just my lovely peach fuzz. My hair is really growing in nice now... Caleb told me the other day, "Mom I think you should wear your wig because people who don't know you will think you are a boy." Out of the mouths of babes! They tell it how it is.
I received my pathology report from surgery. They found a couple of spots of cancer left in my breast, tiny really, compared to how much cancer there was before surgery. The two spots they found were .7cm and .9cm. The down side of this, is it looks like I will have to have radiation. I was really hoping to get out of it, but it doesn't look like I will.
I had my first of weekly Herceptin only today. It was so much easier to just have herceptin and Zometa, and no more taxol. Dr. Hanson recommended that I do weekly Herceptin instead of the triple dose every three weeks until we know whether the Herceptin can keep the cancer at bay well enough by itself. I also am supposed to start a drug called Aromasin today, which is a daily pill that will make it so my adrenal glands no longer convert fat to estrogen. All of these matienence treatments are to keep the cancer from growing and keep me alive forever. That is the goal anyway.
One more thought before I end this rambling, just in case anyone was wondering, I lost 2.19 pounds from having my breast removed. Hardest weight loss you could ever imagine...... I don't recommend it.
Here are the pictures........
 This picture is pre surgery in my cute new pink jammies with monkeys on them. I am holding the most adorable beanie baby bear with cute pink ribbons.
 This is me in the hospital the day after surgery. See, I told you I was swollen like a balloon. I think this is one of the worst pictures of me ever taken, but then again, I think this is the worst I have ever looked in my life!
 These are some pictures of the wonderful gifts I received at the hospital and once I was home. They have just brought me so much enjoyment!!!!!!
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