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.
We were all 3 diagnosed with inflammatory breast cancer within days of each other. Why are they gone, leaving their families, husbands, children, and friends? Why am I still here?
 Kim Franklin aka kimmie39 died July 4, 2008.
 Andrea Collins aka Punk Rock Mommy died Saturday July 5, 2008
To start, I would like to apologize for my previous negative post. I really try my hardest to not focus on the negative, but every once in a while, it is hard to see past the negative of cancer and treatment.
In my previous post I focused on the bad things about having cancer and treatments, so for this post I am going to focus on the positive.
Positive things about cancer and chemo
1. Easy to get ready for the day with no hair to comb. Just pick a hat or wig, put it on, and away you go!
2. All of the help I receive. Last time I was on chemo, I had friends, family and church members bring in dinners three times a week, babysit my kids every afternoon so I could rest (and spoiled my kids rotten!)
3. Lots of help with cleaning my house. My house hasn't looked this good since I had just 2 kids to keep up with.
4. All of the pretty flowers I received.
5. Last summer, the weeds in our yard would miraculously disappear!!!!
6. My yard makeover.
7. Yummy treats dropped off just because from friends and neighbors. I don't think there was a time we didn't have a plate of cookies or treats on our kitchen counter. And no matter how lousy I felt, cookies and cupcakes always tasted good!!!!
8. I get to take a nap every day, and no one thinks badly of me for it.
9. Having a handicap parking permit.
10. Not having to shave my legs!
11. Quick weight loss, I lost 20 pounds in 5 months.
12. Gaining a stronger relationship with my family.
13. Not taking things for granted, like every breath, every heartbeat, and every moment. I now treasure every moment with my children, reading stories, playing games, watching movies, eating dinner together, going on vacation together, laughing and joking around. Each of these moments is precious.
14. My sisters taking turns watching my kids every week when I went in for treatment, and my mom and husband sitting with me through all of those hours and days at the hospital.
15. Having my faith in Jesus strengthened, and all of the miracles that came out of handing Him my burdens, and having Him help me through all of those hard days. I know I wouldn't have made it through those hard months without Him. And I know that I will be able to make it through chemo again, if I put my trust in the Lord.
I just need to remember the scripture "I can do all things through Christ which strengtheneth me." Philippians 4:13
 Paragraph.
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.
 Todays date is June 19, 2008.
I already spent hours here at the hospital on Tuesday, but what a joy, I get to have the pleasure of spending another exciting day at the hospital.
Day of tests, here I come.
I decided to keep a journal of the days events so here we go.
This morning at 7:00 a.m. my alarm went off. I just barely fell asleep at 4:00 a.m. So I am starting the day on only 3 hours of sleep. Not good.
It is time to start "bowel prepping" for my CT scan today.
I open the fridge and see the two, seemingly HUGE bottles of Berry Smoothie Barium Sulfate. They might as well change the name to "Barfium" sulfate. Two 450 ml (appx. 30 fl oz.) bottles of thick, gag making, stomach turning, foul tasting fun.
Honestly, I think the hardest thing I have had to do since having cancer is drink bottles of nasty stuff for tests. It is SO HARD to force yourself to drink these things.
 can you see how thick and yucky this stuff looks?
7:05 a.m.
I have poured 8 ounces of this delicious drink into a cup. I stare at it for a minute or two, dreading having to drink it. I can already taste it. I want to gag just LOOKING at it.
I plug my nose, tip my head back and try to chug the beverage of the day, yet I just can't get it down. As soon as I swallow, it just wants to come back up. I got half of the glass down I tell myself, mind over matter, it is just a smoothie. But I just can't seem to trick my gag reflex.
7:10 a.m.
Finished with the first glass. I rinse my mouth and gargle to try to get the thick coating out of my mouth. Only 3 more glasses to go.
I am SO going to buy myself a box of chocolates for a reward for having to do this.
I set an alarm for 8:45 a.m. when it will be time for the second glass.
8:45 a.m.
I know I have to drink another glass of this stuff. Can't do it quite yet.
8:55 a.m.
Have to drink it. Piano student will be here any minute.
8:57 a.m.
Okay, enough procrastination. I HAVE to drink this NOW.
Chug, chug, chug,. Whoops, it's coming back up. Hold my hands over my mouth trying to keep it down. Can't quite. I loose some of it in the bathroom sink. I have about an ounce of this dose left to drink. Figure if I drink it, it will come back up, so why torture myself. Dump the rest down the sink. I rinse my mouth and run downstairs to teach piano.
10:00 a.m.
I just got done teaching 2 piano lessons, and my 10:00 student is here. I don't have time to be wishy washy and take 10 minutes to drink this dose. So I gulp it down, trying hard not to gag while my piano student is sitting in the other room. It actually went down pretty easy.
10:05 a.m.
My stomach is gurgling and hurts. It SO wants to expel the foul contents that are in there.
10:40 a.m.
I finish teaching lessons. My mom is at my house, ready to take me to the hospital. Ready, set, go. I give all of my adorable children hugs and kisses goodbye. The worst is almost over, I only have one more big glass to drink.
11:00 a.m.
On the way to the hospital. We stop at a gas station so I can buy a bottle of water so I can rinse and gargle after drinking my prep. They had these cutest little breast cancer Chevron cars, and my mom bought me one for a prize if I am brave today.
11:05 a.m.
I drink the last dose of barium sulfate. I drink all of the bottle except for the last inch. I somewhat guiltily throw it away. I figure that cheating and not drinking a little bit of it will be okay. I should have saved it for Dan so he can have the pleasure of sampling what I had to drink.
 This is a picture of a CT Machine. I don't know the actual name of it, but for those of you who have been lucky enough to never needed one of these tests, I thought I would show you what they look like.
11:30 a.m.
We arrive at the hospital. I get checked in at Radiology. They take me back and I get changed into scrubs. A nurse escorts me back to the CT machine, and hands me another glass of Barium Sulfate. This time it was luke warm. Hard to drink it with an audience, don't want to gag and retch. I ask for a glass of water so I can rinse and spit after drinking. Got it down! NOW the worst is over.
The nurse starts an IV so they can inject me with some dye. I climb on a narrow little tray that doesn't seem like it is sturdy enough to hold me. At least they give me a pillow for my head, and a wedge for my legs.
They do the first scans, which only take a couple of minutes. The tech then injects me with the contrast. When this goes into your system it feels like you are standing in front of a furnace. A wave of intense heat radiates from my head to my fingers and toes. Very uncomfortable, and I have an giant wave of nausea. Hope I don't loose it!!!!
11:50 a.m.
All done with the CT scan. A tech from Nuclear Med comes to inject me with some radioactive dye to prep for the bone scan. Now why couldn't they just inject me with something for the CT scan instead of having to drink that nasty stuff?
11:55 a.m.-1:00 p.m
Now that I have been injected with a radioactive tracer something in my blood, we have to wait about 3 hours for it to travel to my bones before the actual scan can be done.
So, I get a break from tests for a little while. My mom takes me to lunch at TGI fridays. It felt so good to get something other than Barium sulfate in my stomach. By the time we are done eating, I am in the bathroom sick. Ah well..
1:15-2:45 p.m.
We have time to go to the mall. What a bonus!!!! I even got my box of chocolate from Sees. I spent more time in the bathroom at the mall than I did shopping, but at least I have my chocolate to enjoy tomorrow once my stomach *hopefully* feels better.  3:00 p.m.
Time for my bone scan. This takes about 30 minutes. They scan to check for tumors in the bones. I LOVE the techs at NucMed. They are the sweetest, kindest, best employees in the whole hospital. ;o)
You lay on a table and this big machine scans your bones from head to toe. I have been injected with some kind of nuclear tracer. It will make "hot spots" show what is going on. All I know is that it is a heck of a lot easier to just be injected with something instead of having to drink something. And then to top it all off, I read online that sometimes if you have had barium recently, that it can mess up the results of the bone scan. What I read said that I should have had the bone scan before the CT scan, but it is too late now. I am not redoing either of those tests.
3:40 p.m.
All done!!!!!!!! Easy!
My sister in law Katie had a baby yesterday, so I took advantage of the fact that we were already at the hospital and went to visit. Her baby is ADORABLE!!!! I love holding new born babies. Her skin was so soft, and she made the cutest noises and pulled the cutest faces while she was sleeping. A perfect end to the day.
5:30 p.m.
We make it home, after my mom dropped me off at Dan's work so he could drive me home. I am greeted with hugs and kisses. I insist that I am radioactive so the kids have to stay away and let me rest tonight.
Now I just have to wait to the doctor and get results. The waiting is almost as hard as drinking Barium Sulfate.
 Jack-in-the-box
Did you ever play with a jack-in-the-box when you were little. You know the toy, where you crank the handle, and the song "Pop goes the weasel" plays. You know what is coming, you know this scary-funny looking clown thing is going to pop up, and you are going to be startled. You just don't know when. You turn, and turn, and turn the handle, waiting for the inevitable to happen.
That is how I feel. I feel like a ticking time bomb. I just know that the day is going to come when my cancer is going to rear it's ugly head again. I just don't know when or where. Some days I can almost forget that I have cancer, but the reality is that those terrible little cancer cells are still there, just waiting to "POP" into growing and spreading again. The fear is always there in the back corner of my mind, no matter how hard I try to shove it out my head. I can't forget.
I try to just enjoy turning the handle of life, enjoying the music and happy times. And hopefully I won't scare too bad when "Pop goes the cancer!!!!"
One year ago today, I head the life altering words, "We believe you have a rare, very aggressive form of breast cancer called inflammatory breast cancer." For a moment, the world stood still. The next moment the world was a very different place.
The following days were a whirlwind of biopsies, bone scans, MRI's CT scans, and doctors appointments. This was followed by weeks of chemotherapy, more tests, more Doctors appointments. Throw in a couple of surgeries, and 6 weeks of radiation.
I can scarcely believe that it has been 365 days. Some days seemed like they would never end, I was so sick, and in so much pain. But the weeks flew by, as did the months. And now it has been a YEAR!!!!
But I survived! Although not alone. I know that I would have been unable to bear the burdens of this trial without help from all of my family and friends, priesthood blessings, and most importantly, my Savior.
So celebrate with me today! I challenge to look with new eyes at the world around you. Enjoy the beauty of spring, the flowers, the blossoms on the trees, the beautiful blue sky. Even when life is hard, it is still good. Count your blessings. Every breath is a gift. Every moment with your friends and family is precious. Smile and laugh, and enjoy life!!!!!!
 My boys
 My girls!
 My TEENAGER, Blake
 Silly moments that make me laugh.
 My sweet, sassy Abby.
 My sweetheart, Dan, who spoils me rotten.
 My little tornado, Ammon, who occasionally tires out.
 The beauty of nature.
 Being able to take my kids on "special nights" like my dad did when I was growing up. Each week I take 1 of my kids on an activity of their choice, so we can have 1 on one time. I am grateful that my dad did this for me, and glad that I am physically able to do things like take Caleb to the Dinosaur Park.
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!)
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