Sayonara to Chemo!

It's been a long time since I updated this blog. Sorry everyone. That last chemo session in January hit me like a ton of bricks! I've been pretty sick. The chemo is now hurting my taste buds, so everything tastes gross. I'm really having a hard time eating or drinking.

Anyway, I just had to write and tell everyone that I just had my very last chemo treatment on Wednesday. YAY!!!! I can't believe it's over. I'm so happy. Sick, but happy. My doctor actually told me this time that the chemo leaves my body after about 4 days. I didn't know that. He said the side affects stay for about 3 weeks, so that explains why I'm sick for so long. But, the good news is that my hair should start to grow back in about 3-4 weeks. I'll have a head full of peach fuzz when my missionary son, Grant, comes home in 5 weeks.

Yesterday, at the chemo place, all the nurses were so happy for me. Then my sis, Kris, showed up with my niece, Ellie, and a hand full of balloons (pink hearts and a great big monkey) and a pretty velvet box full of goodies. The nurses sent me home with a bottle of sparkling peach/apple juice. I'll have that when my mouth tastes better. Other patients kept saying things like: "Congratulations" and "Good luck". My mom cried before the chemo started and I cried the second I stepped out of the office. What an emotional day. I just can't quite describe how it made me feel to know that I made it through the chemo and now I'm on the road to recovery. I feel like I've been holding my breath for 6 months and now I can finally breath again. Wow.

I've been under the impression that I have to wait for 6 months after the last chemo to have my reconstructive surgery done. But, yesterday my doctor said no, I can have it done whenever I want. Isn't that great news?! I thought I'd be having it done in September, but now, as soon as we are finished expanding I can have the surgery done. I'm hoping it will all be over by June. I can't wait to get these expanders out! My chest is getting very tight and sore. The doc said that as soon as I decide that I'm at the size I want to be, then he'll expand two more times and then schedule surgery. I've heard that the surgery is really hard, but I think mine won't be quite as painful because I'm still numb all across my chest. Hopefully that will help dull the pain of recovery. I'll actually have one big surgery (to replace the expanders with sicilone implants) and then two smaller surgeries - one to form the nipples and another one to tattoo around that area. I'll just be happy when it's all over.

The only disturbing part about this whole thing is, my doctor said the only way to keep on top of future cancer is follow up visits. There is no test that can help. I'll just have to wait until I have, for instance, a cough that won't clear up, or an ache that won't go away. Then we can check it out. Of course, I'll never have another mammogram (what's the point, right?) no other test will catch anything very early (MRI, CAT, blood tests, etc.). The doctor says it doesn't make him too happy, but all we can do is meet every 3 months for the first two years, then every 6 months for a year, and then every year for the rest of my life. I wish there was a better warning than a cough or an ache. Oh well. I'll just have to keep myself really healthy - lose weight and really start seriouly exercising - and then hope for the best.

I'll try to start the blog posts on everything that led up to when I started this blog. There's alot to tell and hopefully my experience will help others.

Bye for now...
-Kara

Power Surges (Hot flashes)

Just a quick post about my chemo treatment today. The more chemo that piles up in my body, the more hot flashes I get (or as my husband, Rick, calls them - Power Surges). I seem to remember reading something about chemo putting you into menopause (if you aren't already). I wasn't - I'm 42. Although about 4 years ago, before I had a hysterectomy, I was told that I was in "early menopause". Who goes through menopause at 42??!! I didn't think I'd have to go through this until I was at least 50. Surprise!!!! Ok, when I say "hot flashes", I mean probably, minimum, at least 20 per day. I've started taking my fan that I got at Timpanogos Storytelling Festival (little plug there) with me everywhere. And Alex is getting good at knowing when to pick up a pillow to fan me with. Oh crap, I feel a Power Surge coming on - where is my fan?

Drip....Drip....Drip.... A Chemotherapy Treatment

For my cancer blog post this week, I thought it would be interesting to blog as I’m receiving my chemo treatment…

I’m here at the Huntsman Cancer Institute (the one in Provo) and I just went in to have my blood work done. I have a port in my chest. It’s a triangle thing that has a stint thing that goes into the big vein in my chest that goes straight into my heart. The port is under my skin, so the IV needle has to poke through the skin. That kind of hurts (a lot), so about an hour before I get the IV, I put this cream stuff on that is a mixture of Lidocaine and Prilocaine. It numbs the surface of the skin so that I can’t feel the needle going in. It’s my best friend during chemo treatments! Anyway, the chemo nurse (Annette this time) prepped the area first. Because it’s a huge vein that goes directly into my heart, it’s really important to make sure that the area is very clean – we don’t want infection going into that vein. So, the nurse swabs the area first with iodine – she does that 3 times. Then she swabs it with alcohol – three times. Then she says, “Take a deep breath”, and she sticks the needle in. Once that is in, she takes blood, and then flushes the IV with saline. Flushing is kind of unpleasant because I get this disgusting taste in the back of my mouth. The only way to describe it is that it tastes like a skunk smells. Yeah, it’s gross. But it only lasts a short time and then goes away. The nurses say that they’ll give me a piece of candy to mask the taste, and I even have candy in my purse for that purpose, but I forget to put it in my mouth EVERY time. I’m back in the waiting room for a minute, waiting to see my doctor, who will check me out, ask me about the side effects that happened with the last chemo treatment, and look at the results from the blood tests. He’ll use all that information to make sure everything is ok, and adjust the drugs if he needs to.

On the way to see the doctor, the nurse makes me stand on the scale. How annoying! I’m not going to tell you how much I weigh. I expected to lose some weight while on chemo, and it’s not happening. The ONE good thing that could come out of all of this isn’t happening. Sigh. *I found out that the reason I’m not losing weight is most likely because I’m on steroids – something I didn’t know. The drug is called Dexamethazone and I thought it was a chemo drug, but it’s actually a steroid that helps with the side effects of chemo (like the skin burning on my hands) and it also helps with nausea. Apparently it’s supposed to make me gain about 15 pounds. I haven’t gained or lost really, so the drug and the fact that I know longer eat dairy, or soda, or even much food, have cancelled each other out. Yay – I think.

My appointment was at 10:00 am and now it’s 12:15 pm. They are really busy today! So, now I’m starting the IV medication. The first thing they give to me is Aloxi, which is an anti-nausea medication (that lasts about 4-5 days) and Dexamethazone, which is a steroid that also helps with nausea. (That’s where is learned about the steroids). Drip….Drip….Drip….

12:40pm – Now the Taxotere has started to drip. Taxotere is one of the two chemo drugs they give me. Taxotere has some nasty side affects. Nausea, of course, but also diarrhea. And just this last treatment, it started to “burn” my fingers and the back of my hands, so my skin is tender and peeling. In fact, the skin on my fingertips has peeled so much that the fingerprint reader on my computer won’t recognize my fingerprint anymore. This med is also bothering my eyes – the skin around my eyes went really red and got sore this last treatment. Drip….Drip….Drip….

I asked if they were going to give me Emend today. That is a really good anti-nausea medication. The nurse went to check… 12:48pm: She just came back and injected the Emend into the IV. For some reason they didn’t have it ordered for me today. I’m glad I asked, because I would have been miserable without that med.

This is taking FOREVER……Aauuugggghhh! We’ve been here for almost 4 hours and I still have two more meds to go.

It’s now about 2:45 and my first med is over. Jeez! They just gave me the second chemo med – Carboplatin – and started the drip way faster than the last one. So, this shouldn’t take too long.

It’s 3:50 – the Carbonplatin is gone and they just started the Herceptin. This is the med that I have dripped every Wednesday. This should only take about 30-45 minutes and then we’ll be finished for the day.

My friends, LoriAnne and Steve Spear surprised me with a short visit. It was nice to see them. They visited during the Taxotere. I was feeling just fine. Mom and I had just had hamburgers and chocolate shakes (my “last meal” before I get sick again) and everything was just great. During the Carboplatin, I started feeling sick. For one thing, I was back in the corner (the room is shaped like a capital letter L). I was packed into the far corner with a ton of other people. For some reason, it’s really busy here today. The nurses are running all over, trying to keep up. I started to get severe hot flashes and my stomach hurts, just below my breast bone. Weird. I finally had to move to a less crowded part of the room – it’s not as hot here (although I just got hit with another hot flash – not sure if it’s because I’m getting chemo or because I’m old. Hmmm.)

The Herceptin just finished. Now they’ll just flush out the IV (more skunk taste/smell – mmmmm), and then they’ll say “Take a deep breath” and they’ll pull my needle out. Mom is out at the desk making my Herceptin appointments for the next two weeks. The last thing that will happen before we leave is that incredibly painful $4000 shot in the stomach. Yay!!!

…OUCH! Cancer sucks.

P.S. On the way home, we tried to get the nausea meds prescription filled – because it’s New Years Eve, all the pharmacies are either closed or out of the medication and we had a difficult time finding it. Kohlers pharmacy came to the rescue 2 minutes after they closed and got me the medication. Now I won’t be as sick for the next two days. The good cancer fairy must be working overtime! J

I'm going to be tired ALL of the time? Not acceptable!

I hate the way Chemo makes me feel. I had my third treatment on Wednesday and I'm soooooo exhausted. If you know me at all, maybe you'll understand why this bothers me so much. Before I was diagnosed with cancer, I went 150% all the time. In fact, it was getting to the point where my family and friends were telling me to slow down. Then cancer hit me, and it's changed my ability to go full blast - or even at a slow crawl. There are a bunch of yucky side affects from chemo - nausea, raw mouth and sores, dry nose and bloody noses, hot flashes and being flushed on my face and neck, diarrhea, etc. - but I think the worst one is being so darn tired all the time. It took me a full day to decorate my Christmas tree. There's something not right with that. I've been reminded time and again about the need for taking care of myself. "Just forget everything else, and take care of yourself - for once". If it was up to me, "taking care of myself" would mean diet and exercise, scripture study, learning new things, etc. Not dealing with cancer. Ok, that's enough of the whining. Other people have it much worse.

I'll end with explaining this picture of the chemo blanket my mom made for me. My mom is my chemo partner and she grosses out whenever I use one of the "public" blankets in the chemo room. She says they are covered with germs. So, she found this really cool fleece fabric with skulls and crossbones all over - very appropriate for chemo (poison). I took it with me for the first time on Wednesday and snuggled under it for the whole day. It was great and my nurse loved it. Thanks Mom!

"Don't drink that poison - it's $4.00 an ounce"

That quote is by Groucho Marx - when Rick quoted him, I knew I'd found the perfect name for this post, not just because of the price reference, but because chemo is poison. :-)

I've been waiting to write this blog post for awhile. I decided that I would blog about the cost of cancer some time ago, when I found out from the pharmacist that one bottle of nausea medication (30 pills) was costing me (actually, my insurance) $700.00! I take 3 pills a day. That's unbelievable, right? FYI, I take, not 1, but 4 nausea medications. I counted my pill bottles the other day. I have 12 prescriptions (Ondansetron, Promethazine, Cyclobenzaprine, Dexamathasone, Lorazepam, Effexor - just to name a few). I don't take them all right now, but that's quite a bit of money, just in pills. I started to try to figure out how much money, in pills, I was consuming every day and I stopped at around $800. It was making me sick to my stomach and I didn't want to have to take another nausea pill...

A few weeks ago I received a statement from my oncologist's office. It was one of those "this is not a bill" statements - just telling you how much your balance is and that they've billed the insurance. My balance was $25,000! Ok, so this was my balance after one (that's right, ONE) chemo treatment. In the last 4 months I've had 3 surgeries, a CAT scan, a bone scan, an MRI, 2 mammograms, etc. etc. I've had many, many statements and bills to work out. Good thing I've got insurance, right? The hospital bill from the mastectomies, alone, was over $30,000. But this statement from the oncologist really got my attention. Is chemo really that expensive? It's just 3 little bags of liquid for every treatment. So, last week, when I went for my Herceptin treatment (something I get to do every Wednesday), I asked for an itemized statement, so I could see what that $25,000 represented. When they brought the statement to me, it was no longer $25,000 - now the balance was over $40,000! (Deep breathe)

When I saw the cost of my treatments, I just about choked. Here's a list of what it costs, just for the IV medications, every 3 weeks: Carboplatin is $4284.00, Taxotere is $5488.00, Herceptin is $6048.oo (for the first time) and $3024.00 for the rest of the treatments - (I get this one every week for 4 1/2 months and then every 3 weeks for 7 1/2 months). Those are the IV drips. Then, after every chemo treatment, I get a fun little shot in my stomach that costs $4116.00. So, if you add all of that up - it's around $104,496.00 for 6 chemo treatments. The cost of the remaining Herceptin is around $30,000. These cost do not include the blood work that is done every time I go in to get a treatment, or the other "associated" costs, which add up to around $1500.

The cost of cancer is different for every person. Some people have more surgeries, some less. Some have different medications than others. Some people have treatments for way longer than others. For me, the cost of cancer has been around $202,000 so far. That is not including the reconstructive surgery (or any charge at all from the plastic surgeon) that I'll have next year.

For others, the cost of cancer is way higher. I'm not stupid - I know that the insurance companies don't pay nearly that much for my cancer. But, what if I didn't have insurance? There are people out there, with cancer, who don't have insurance. These drugs/treatments are way too expensive. I wish I could help those who struggle with the cost of cancer. I'm lucky enough to have a $1500 out-of-pocket maximum each year, so this will only cost me around $3000 plus copays on hospital/doctor visits and medication. I've given money to cancer fundraisers for years - ever since my grandfather died from Lymphoma. Now that I know, first hand, the cost of cancer, I'll continue to do this - I encourage everyone to help out with any cancer fundraiser. I'll be at the cancer walks next year - I encourage you to be there with me, or participate in one wherever you live. Not only does it help with the outrageous cost of cancer, it will make you feel wonderful. Galatians 6:2 - "Bear ye one another's burdens..." Help out those who are in need.

By-the-way, don't get me wrong. I'm thankful for the medication that has been developed to help me fight this beast. I'm really grateful to the surgeons and doctors who have helped me, and will continue to help me for the rest of my life to monitor the cancer. And I'm especially thankful that Rick has such great insurance. I know that it costs millions of dollars in research alone to fight cancer. I just wish it wasn't so expensive for those who have to pay for this themselves. Cancer sucks!

As The Poison Drips...

This post will be fast, because I'm already feeling the affects of the chemo treatment I had today. My first chemo made me sick for 10 days. I won't put all of the gruesome details here, because none of you need to know that. Let's just say that today, we tried a new nausea medication - the "latest, greatest" on the market. That, in addition to the other 3 nausea medications will hopefully cut down on the amount of days that I'll be sick. The doc was concerned about a few other things (i.e. those "don't need to know" things I was talking about earlier) and so he lowered my dose of one of the chemo meds - Taxotere. That's a pretty wicked drug. I also take Carboplatin and Herceptin. Those three drugs come after the two nausea drugs. They each take about 30 minutes to 1 hour to drip - one at a time - so we are there for about 4-5 hours. My sweet mom, Barbara, is my chemo partner. She picks me up and takes me there and then stays the whole time. Today, it hit me faster - my mouth was so dry by the time I finished, that it was painful. And I'd already started getting tired by the 3rd bag of stuff. In fact, I can hardly keep my eyes open. I used the numbing creme on my skin above the spot where my port is. Oh, some of you probably don't know that I have a port. It's a small plastic triangle thingy that is under the skin of my upper chest - right below my collarbone. It has a cathether that goes into my big monster vein behind my collar bone. That's where the nurses access my vein for the drippy drugs and blood work. The needles are pretty wicked - OUCH! So, I numb the skin an hour before I go. Then, the nurse pokes a yucky needle through my skin and into the port. Today, it work really well. I didn't even feel the needle at all! Yay! The last thing I "get" to have is a shot in my stomach - can't remember what for. That one hurts. Ouch. So, all in all, the day was pretty good. Now the wait begins to see how it will affect me. I'm already started to feel nauseated, so hopefully the 4 pills I just took will start working and they'll knock me out too. ;-)

Note: if you ever have to go through this and you lose your hair, use a dog-hair remover on the stubble on your head - Alex just did this to my head and it really works! :-) Until I can get out of bed for the next post... say it with me, CANCER SUCKS! You know it!