My head hurts too bad to focus and type too much, but I just wanted to let you all know that my Gamma Knife procedure on Wednesday went okay, and that I am recovering. Having the metal frame screwed into my head was quite a bit more traumatic and painful than I imagined it would be, and my head is swollen and really sore still. I am on some pretty high dose steroids that are making feel a little crazy, and I still feel yuck from having chemo earlier this week. I will post more about gamma knife and put some pictures up once my head stops hurting so much. Thank you for your prayers, well wishes, and concern.
How grateful I am to have a lap top, so even when I am lying in bed feeling sick and miserable, I can have the pleasure of typing it up to share with everyone. I have been meaning to post this entry for a week, but every time I sit at the computer, it makes my head hurt too bad, and I get dizzy and blurred vision, etc. So, even though I am posting this now, the following entry was from August 19th.
I began aggressive weekly chemo again last week. I decided to keep a journal of the days events so I can share what a chemo day consists of.
August 19, 2008
This day, began at 7:30 a.m. I had to be to the hospital by 8:00 a.m. My appointments will consist of A LOT of waiting. The first thing I did was go to the lab to get blood work done. This is done to ensure my body can handle the weekly dose of poison, I mean chemo.
Then, I get weighed in, and wait and wait to see the doctor. He is a really great doctor, and he will take whatever time you need, however this translates to a really long wait while he takes the time to talk to all the other patients. My appointment time was 9:00 a.m. and I think I finally saw the doctor at 9:45 or so. Really lucky for me!! Sometimes the wait can be up to 2 hours! Thank goodness for an early appointment time.
We had a really good discussion with Dr. Hansen about my prognosis now that I have brain mets. He believes that if treatment is successful again as it was with the same drugs, plus with all of the other chemo drugs that are available for breast cancer, that he should be able to keep me here at least a year, and hopefully a couple of years. Of course, this is just best case scenario. I could die in a car accident on the way home from the hospital. But it is nice to know what "usually" happens with stage 4 cancer, and what to expect. This round of chemo will be 6 months of 3 weekly treatments, followed by a 1 week break in between cycles. I have a LONG road ahead of me.
 After I visit with the doctor, I go to the infusion room. This is a room jam packed with 15 recliners, plus a bunch of old ratty chairs for your visitors to sit in. I don't know why this annoys me, but it does. I feel like they should have more comfortable chairs for your support people, and more privacy. It is now 10:10 a.m. I am settled in my chair and just waiting to have my IV started.
 Once you are in the infusion room, you have to wait to get "hooked up". Sometimes this takes a long time, sometimes it is quicker. The oncologist mixes all your drugs by hand in what Dan likes to call "his kitchen". It kind of reminds me of a mad scientist in his lab. My drug cocktails include: Anzamet, Aloxi, Dexamethasone, Benadryl, xantac, and those are only the PRE meds!!!!
After all of those are ran with a bag of saline, then the chemo drugs start. First is my Hercpetin infusion. I will only be getting the smaller weekly dose again instead of the every 3 week dose. The weekly dose takes about 30 minutes.
 Then the next drug is Taxol. Because this drug is more toxic, it takes longer to run the IV. It takes about an hour. The first week of the 3 week cycle I will receive Zometa, the drug for my bones. This IV takes about 30-45 minutes. On the 2nd week, I only get Herceptin and Taxol. On week 3, I get a double dose of Herceptin, and a single week of Taxol. Then I get a week off so my body can recover. Confusing? Yes. That is why I take note of what drugs they are supposed to give me, because the nurses are so busy running around helping all the people receiving chemo, and every patient gets a different cocktail. If I don't keep track of my own stuff, sometimes the nurse will give me the wrong premeds, or run the IV too fast or too slow, or forget to put a filter on the IV tubing, you get what I mean!
 1:00 p.m. Almost done. I have watched the slow drip, drip, drip of the IV and the slow tick, tick, tick of the clock. I am now pale and drawn and just don't feel good. I feel like I want to jump out my skin (I am told this is from the Dexamethasone, steroid). I am ready to be done, and go home, and crawl in bed.
 Here I am, bored, tired, and just starting to feel the effects of all of the drugs flowing through my system. I just pray that they are killing cancer cells while they are ravaging my healthy cells.
 Here is Dan. He comes up to the hospital to bring me lunch, and keep me company. He waits until I am done with treatment, and then he takes me home. I am afraid I am usually not very good company. I get kind of ornery, and just want quiet, and we all know that Dan has a hard time being quiet!! I love him anyway!!
 Now just waiting for the nurse to come unhook me from my IV. My mom and Dan always remark the vast difference of how I look before treatment, and after. It is just really physically draining on the body to go through this. Usually by the evening of chemo, my hands and feet are burning, I am tired, yet antsy. I have so many side effects, and then have to take pills for those side effects, that cause more problems and on and on. I don't even know what "normal" feels like anymore. I guess this is my normal.
 Here it is, 1:30 p.m. and I am almost going to be outta here. My mom has been stalwart and steady, with me every visit. Lots of times with her cell phone up to her ear, she keeps all of the family in the loop. You can see the clock in the background. Can't wait to get home and crash.
I was sitting up feeling sorry for myself late last night. I was frustrated and somewhat discouraged because I have to go to battle against my cancer again. I thought, haven't I already done this!??? Why do I have to do it again???!!?!? This is just so hard, and some people just seem to have it so easy.
Suddenly the words to a favorite hymn of mine "Come, Come, ye Saints" came forcefully into 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!!
I felt like Heavenly Father was telling me to gather my courage, pick myself up by my bootstraps and do what I need to do. He will never forsake me, or leave me alone. He will be there every step of the way to give me strength, courage, comfort and hope!!!! My Savior, Jesus Christ, has suffered all so He can succor me through my challenges, illness, and heartaches.
I think of the pioneers and early saints and all of their sufferings and challenges. They were persecuted, and had to walk hundreds and hundreds of miles. I am so grateful that we have their diaries and records of what they endured. It brings me so much comfort to know of their faith and their testimony building trials. I hope as I share my "tale to tell" that I give some comfort to those who are journeying with me this cancer journey, and to my children if I am not here, and to others who may journey this path later on.
I also was reflecting on the last verse of this hymn:
"And should we die before our journey's through,
Happy day! all is well!
We then are free from toil and sorrow, too;
With the just we shall dwell!"
Is death really such a bad thing" It is certainly a sad time. I know I miss my loved ones who have died. The closest relative I have lost is grandfather, but I have lost a couple of dear friends. My heart aches with loss, but my heart is also filled with gratitude, because I KNOW that they are in a better place, and they are free from suffering, and sorrow. I know that I will see them again. This life is such a short time. This life is not the end. I KNOW without a shadow of a doubt that I will be with my family forever. And if I should die, I will still be here, not in body, but in spirit. I will still be there to comfort and guide my children and family. My actions and words in this life, and in this blog, can help them if I am not here to speak to them. I am working on scrapbooks full of my memories and advice for them. And I know that when I die, I will be reunited with many loved ones who have missed me as I have missed them.
Okay, I know that is a lot of focus on death, but I just needed to let everyone know how I stand on the subject of death. I am not afraid to die. The thought of not being here for my husband, children, and family breaks my heart. But I take great peace in the scriptures and at church, that all will be made right, Jesus promised that he would not leave us comfortless.
So, I am gonna gird up my loins, take some fresh courage, God will never forsake me, and All is well!!! All is well!!!
I had a whole thing typed up about how I am feeling, and then I hit the wrong key and it disappeared. Basically what it said is that I feel sick.
Back in June when my tumor markers went up and the doctor recommended going back on chemo, I didn't want to because I felt pretty good. Well, I don't feel so good anymore. I am tired all the time, and feeling dizzy and nauseated from the brain tumor. My bone pain isn't being managed very well, and I just feel lousy.
So, I know feel that my quality of life is bad enough to warrant going back on chemo. Most my days are bad right now, they are just cancer induced bad. Once I start chemo, they will be chemo induced bad. It is what it is.
I was able to scrounge up enough energy to go with my family to the fountains at The Gateway in Salt Lake City. We rode the train down, and let the kids play in the water. It was a lot of fun, but it took too much energy. I spent the next day in bed all day because I was so worn out. I am grateful that I was able to go and make more memories with my kids.
Only 4 more days until I begin chemo again. I am not looking forward to it, but I am ready.
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.
So, I have a 2 year old. I love him dearly. He is so much fun. But the last couple of weeks, um, not so much. He has decided that he has to do everything by-him-self. He wants to brush his own teeth, dress and undress by himself, climb up and down the toilet by himself (still working on that potty training thing), and if I dare try to help him, he answers with a shriek and yelling "NO, men do it!!!" (translate men to Ammon, his name) Then he has to start all over again to prove that he can do it.
I was quite frustrated this afternoon because Ammon kept wanting to go potty and then get his pants back on. It was taking FOREVER! Usually, I am like fine, whatever. I could do this so much quicker, but if you need your independence, fine. But then it was time to run Blake and Bekah to golf, and Ammon was insisting on doing it himself. I didn't have time to wait for him. We were going to be late!
I finally get his clothes put back on him, all the while he is kicking and screaming. Then it is time to get in the van. And what happens? Ammon wanted to climb in himself and buckle his own seatbelt. Well, he really has a hard time doing that, so I forcefully did it so we could get on our way.
As I was driving, I began to think about that. I was so frustrated because Ammon wanted to do things by himself that I could do so much easier. Because of his abilities in this point in his life, he is not very capable of doing certain things. He really would like to do these things by himself, but he just isn't physically able to do them.
And then it struck me. I am a 2 year old. I am insisting on doing things all by myself, even though I am not quite physically able to do them. Sure I can try really hard and push myself, but some things would just be easier if I let someone else do them. OF course I can take myself potty, and get dressed all by myself, but I need help in other things. Like having my house cleaned, having help with the kids, having dinner made for me (sweet 10 year old Bekah cooked dinner for us tonight.) I can do housework, it just takes me a long time, and causes a lot of pain. I can cook, but while undergoing chemo the smells of food is sometimes very unappealing, and it is hard to cook when nothing sounds good to eat, or when you are just plain tired or in pain.
So I need to step back, and accept help. But please understand that sometimes I do want to do things ALL by myself. I guess the wisdom would be balancing out what I NEED to do to feel needed and productive without totally exhausting myself. hmmmmm. Just something I have been thinking about.
I have been listening to some uplifting, encouraging, faith building songs lately in hopes of keeping my spirits up. One of my favorite feel good songs is Martina McBrides song Anyway. The message is so true. No matter what your problems are, if you put your faith in God, all will turn out for good. Life may not be perfect, it may not be what you had planned, but it is still good. So, whenever I need a little mood-booster, attitude lifter I listen to some inspiration music.
One of Dan's favorite cancer songs, if you will, is Tough by Craig Morgan. It made me cry the first time I heard it. Anyone who has gone through cancer knows that this song says it how it is.
I had some links to some youtube videos of these songs, but the videos are no longer available on you tube. You can listen to the songs on seeqpod.com
I had my regular treatment of Herceptin and Zometa Tuesday. I also had my blood drawn for tumor marker tests again. You know it is bad news when the doctor calls you personally first thing the next morning. My tumor markers had another big jump. The doctor told me they wished I would have started the Taxol when I had my Zometa/Herceptin infusion. I have been rationalizing the delay, but I know it would be unwise to delay too much longer. The Dr. told me that Her2+ cancer has a higher chance of metastasizing to the brain, and I need to get it under control sooner rather than later. Also there is a chance that the cancer will be resistant to Taxol, so the sooner we know whether or not it will work, the better.
We have a vacation planned August 6-12 and I plan on starting chemo again August 19th. That is only 18 more days. Yuck.
I think it will be harder this time to start aggressive chemo again than the first time. The Dr. told me that the side effects happen sooner the 2nd time. I already know exactly what to expect.
 I do have to share something that brought a smile to my face and brightened my day last week. Early Friday morning, there was a knock at the door. A package was waiting for me on the porch. I didn't remember ordering anything, so was very curious to see what was in the package. It felt like my birthday.
Inside the box was the most adorable, whimsical fairy. This picture doesn't do it justice. It has the sweetest little details, pink ribbons, delicate wings, and jeweled shoes. It just made me laugh! So, thank you to my Grandma Laughter (fitting last name, huh) and my aunts Stacy and Jan, and my cousins, Ashley, Hollee, Shanna, and Ashlyn. The timing was perfect, and I enjoy looking at my cute little fairy every day!
I also received the most thoughtful cards from my Mom and Aunt Cheryl yesterday. It never ceases to amaze me, and shouldn't surprise me anymore, that whenever I am feeling down, my family and friends are inspired to brighten day.
So no matter how down I am feeling, I don't feel that way for very long because of all of the kindness that is shown to me.
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