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
Over the past couple weeks, 2 women battling the same type of breast cancer who were diagnosed at almost the exact same time as me have passed away. My heart breaks for their friends, families, husbands and children. I can't help but ask myself, why? Why am I still here, and they are gone? Why did my first battle of chemo work, and theirs didn't?
Of course I know the sunday school answer. Heavenly Father has a plan, and only he knows how long we will be on the earth to accomplish our purposes, and learn and grow and be tried. There is just so much guilt that I feel because I am here, and they are not. They both had husbands and young children that needed them. Why did they die, and not me? Am I accomplishing the things I need to, am I doing the things I should? Am I learning and growing? I like to believe that I am.
It is almost time to start aggressive chemo again. I can feel myself getting sicker as my tumor load grows. I am in pain and discomfort a lot. I am weary and bone tired, all day. It is hard to find energy to do even the most simple of things. More areas are hurting. My stomach hurts all the time, and I am not digesting food. It is just going straight through me. There are some concerning changes taking place along my mastectomy scar line. It is getting inflamed again, and bumpy lumpy and itchy, along with stinging pain. I think the start day for Taxol will be sooner rather than later. Probably August 19th. At least that is just right before school starts. Time for battle number 2. Hopefully it works effectively and quickly!!!
We are going to HOT HOT HOT St. George the beginning of next month. When it is that hot outside, swimming feels wonderful. I get a lot of relief from my bone pain by floating in the water. We also hope to see a Tuachan outdoor theater musical while we are down there. I am hoping for the Sound of Music. That was one of the first musicals I ever saw, and I love the music for it. Bekah is also hoping to get a lot of school clothes shopping done.
Well, this rambling post is all over the place, but it is 2:30 in the morning while I am typing this. Dan is gone to Scout camp with Blake so he isn't here to tell me to turn off the computer and go to sleep. I guess I probably ought to anyway!
So, if you are the praying type, please pray for the sisters in cancer who passed away, Andrea Collins (aka Punk Rock Mommy) and Kim Frankin (kimmie39) and their families. I know Heavenly Father hears and answers prayers. We may not always get what we ask for, but we always get what is best for us. Because He loves us.
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.
 This is a picture of me the first day of school August 2007. I don't have many pictures of me without a hat on. It is so hard to see myself this way. I don't even have eyebrows or eyelashes. No makeup either.
 This is me now, at the park on the 4th of July 2008. I don't even recognize myself in the above picture. It is hard to believe that that was what I looked like. I'm not ready for that to be me again. Maybe I am vain, but that is how it is.
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.
My test results are in. I have a couple of new spots of cancer in my bones, but my lung nodule is the same, and my liver is still clear. Not great news, but it could be worse. Because my pain level has been increasing, along with elevated tumor markers and new lesions, my doctor advised me to start the Taxol chemotherapy again. I would be back on weekly treatments for 3 weeks, and then a week off like before. His belief is because Taxol worked before, it should work again. The hope is that the cancer is still receptive to the Taxol. I would stay on it until my bone pain is gone, and my tumor markers are back down.
My thoughts are that my quality of life is better right now, with my pain managed by meds, than what it would be if I was back on weekly chemo. After being so tired, sick and miserable last summer, I wanted to have a normal, active, fun summer this year.
My doctor would have had me start the Taxol yesterday, however I am not ready yet. My desire is to delay the Taxol until after the kids go back to school. I would feel more inclined to start the Taxol again if there was significant progression, or new lesions in my vital organs. But because there is only progression in the bone, I am going to wait.
It is a risk, but I figure that if the cancer is going to spread, it will spread regardless of whether I start aggressive chemo now, or in 6 weeks. Plus I am not ready to lose my hair again!!!!!!
NO news is GOOD news right????
 I apologize for not updating all of you sooner. We just got back from a wonderful, amazing, beautiful, gorgeous, relaxing, exhausting FANTASTIC vacation to Yellowstone. I didn't think to update my blog before I left, and when I saw a couple of friends and family members they just about mobbed me wanting info about my test results (yes, that means you Carol.... just kidding ;o) )
No test results yet. I will get the test results when I see my Doctor on Tuesday. I haven't heard anything from their office, and I figured if the news was really bad, they would have called me and had me come in sooner than just my regularly scheduled appointment. I PROBABLY could have pushed the issue and got RESULTS before our vacation, but I just wanted to go and enjoy and forget about cancer and not worry. I figure if the news is bad, let me live in the land of DE-NILE for as long as possible.
But in the meantime, for your reading pleasure, I kept a log of my day of tests. So if you are interested, read on, if not, check back soon for pictures from yellowstone, as well as my test results once I talk to my doctor.
This independence day I am declaring my independence from cancer. I hereby declare that cancer will not rule my thoughts and actions. It will NOT be allowed to cause me FEAR nor GRIEF. I wish it would just get the heck out of my body and let me be TOTALLY FREE, but if not, I will not let it be the center of all conversations I have, all the books that I read, or all I think about. I am FREE!!!!!!
I wish everyone a happy, safe, and fun independence day, not just to live in AMERICA, a free country, but I hope you can find independence from whatever you need!!!!!!!!
And I am so grateful to live in a free country, where I can worship how I please, say what I please, and have the best medical care available to me. What a blessing it is!!!!!!!
 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.
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