TELL YOUR CANCER STORY
http://www.boundtobecherished.blogspot.com/
Sunday, April 5, 2009
Blessed...Lucky...Loved
Thursday, April 2, 2009
STUPID...!
So, today is not a good day. I'm pissed. I woke up this morning to find that I have another infection under yet another finger nail. I can't believe this! One of the side effects of chemo is that it can (but might not) make you lose your nails. I've had really nice nails for about 6 years. My normal nails are very weak and they curl under, so when I started back to work several years ago, I decided to have my nails done. I don't have fake nails. They are my real nails - they just have acrylic on top to make them stronger. It just happens to be pink and white acrylic, so it does look like I have tips on, but I don't. Here's a picture of the way my nails looked right after I started chemo, 5 months ago. (Ignore the hair - that's the day my hair started falling out in clumps and we shaved it).
Anyway, the nurses told me that I might want to get the acrylic taken off, because they were worried about me getting fungus under my nails. I think they meant infection, not fungus. Anyway, I couldn't just take the acrylic off - it would have torn my nails off too. So, it stayed on. Nothing bad happened until about halfway through chemo. After the 3rd chemo, my nails became really sensitive. My friend, who does my nails, Wendy, pointed out the discoloration and bleeding whenever she tried to file them. Yeah - they hurt, but what was I supposed to do? I had my last chemo and no sign of infection (or fungus). Then, about 3 weeks after that last chemo, I woke up one morning to find my middle finger on the right hand was yellow under the nail (and it hurt like crazy). Ew! I went to have my nails done that day, and as Wendy filed on that nail, it popped open and pus poured out. Gag! GROOOOOOOSSSSSSSS! We got all of it out and then wondered what we should do about the rest of the nails. We decided to file most of the acrylic off and just let them grow out and try to recover. So, that's what they've been doing. I used nail polish on them to hide the gross look of them, so I didn't notice that another nail was looking bad, until this morning when I took the polish off. I've had to keep putting bandaids on the nail that was infected before, because this week it started to lift up and I keep catching it on things. The problem is that it's still hooked on at the base. I don't know how to get it off, unless I resort to some form of primitive nail torture and pulled it out with tweezers. (Are tweezers a primitive tool?!) Well, you guessed it - that's NOT going to happen, so I'll just keep it on with this lovely, fashionable bandaid until it falls off by itself. Now I've got an infection in the nail next to the first one, and it HURTS like hell. The problem is, I can't seem to get the infection to come out. I think I might need to go to the doctor and get another antibiotic. He'll probably used another form of nail torture and shove a sharp object under the nail to release the infection. Oh, I just can't think about it. Maybe I'll go tomorrow. Here are pictures of my nails now (gross):
That last picture reminds me of another thing I'm angry about - I can't get my damn wedding ring on! For the first time in 23 years! This sucks!
To top off the nail episode, I had to go for the pre-op visit to the nose and throat specialist that will be doing my parathyroid surgery next Tuesday. Ok, I don't have anything against this doctor - I'm sure he's a nice guy. I just don't like him. Maybe it's because I'm so annoyed at having to go under the knife again. I have to have a stupid, annoying, poopy surgery right in the front of my neck. I'm sure that scar will be just lovely. Why surgery? I asked him that today. He said that if I have elevated levels of calcium (which I do, because of this stupid little parathyroid thing), I can have all sorts of complications. Like what? I asked. After reminding me that we had already talked about this last week, he told me (again) about kidney stones and other yucky things (see, I've forgotten again). I didn't feel bad making him repeat himself - after all, I had to get something out of this stupid, unnecessary visit (if he already told me all of this last week, why did I have to come back in again - he must need to make a payment on his boat!).
Oh man, I'm having a rotten day. I'm just mad at everyone and everything. I hate cancer, chemo and my stupid, idiotic parathyroid gland (or whatever the hell it is). To make my day even worse, he reminded me that ALL surgeries have risks. Bleeding, infection, blah, blah, blah. Apparently this surgery has the added risk of the doctor accidentally damaging some nerve or something that goes to the voice box (if he's not careful). So, will he be careful? I sure hope so.
Stupid nails. Stupid surgery. Stupid doctor. Stupid chemo. Stupid cancer. Stupid day.
There, I'm through.
Wednesday, April 1, 2009
So Sore...
I think I've reached the limit of how far the muscles and skin in my chest can possibly stretch. I have 900 CCs of saline in each expander! I can hardly move. I am in so much pain. I'm really happy that I don't have to wait for 6 months for the reconstructive surgery (like we originally thought I would), because there is no way I could handle this stretched chest for that long. If I was really brave, I'd post a picture of my chest here. It looks quite amazing - HUGE and hard as rocks. But, I'm not that brave. :-)
One month - May 1st. I can't wait. I know this surgery will be painful and not easy to recover from, but ANYTHING is better than these expanders. I think it will be such a relief to have these out and have soft silicone put in. I hope the next 30 days fly by.
Tuesday, March 24, 2009
Just a Little Update on the Cancer Journey...
I still go every 3 weeks for my Herceptin treatment, but since there are no side effects with that medication, I don't have to worry about feeling crappy. Awhile ago, after my chemo doc looked at some of my blood tests, he told me that my calcium levels were very high. I'm not sure what that really means, or if it was caused by either the cancer or chemo. But, I saw an endocrinologist about it. She scheduled a para-thyroid scan and a bone density scan. The bone density scan was fine - good news, the chemo hasn't hurt my bones. But, the parathyroid scan showed a small tumor (not cancerous) on one of the parathyroids. So, now I have to have a surgery where they slice open my neck (in the front - right in the hollow) and take that parathyroid out. The scar will be anywhere from 1 inch to 3 inches long. Yikes! I have to have that done soon - April 7th. The recovery shouldn't be too bad or take too long. So I have that lovely little procedure to look forward to. I'll have to stay in the hospital overnight so they can monitor the bleeding in my neck and so they can check the calcium levels. Sigh.
As far as the chest expanding goes - it's almost done. I've been expanded to 720cc- the biggest implant they make is 800cc - so I'm pretty much where I need to be. (And no, that doesn't mean that I'll be HUGE - remember, I have zero breast tissue, so the implant is going under pretty much nothing but skin and muscle.) Now, the doc will do 2 more "fills" of 70cc each, on each side, to expand just a little bigger so the implants will fit well. Today is one of those fills. I really hate the fills. The chest muscles are being stretched so tight, that it really hurts. I'm on pain pills almost constantly now - just one a day, though. It usually hurts the most in the late afternoon and evening - after I've been up all day. I'm such a baby when it comes to facing those HUGE syringes of saline with the scary needles attached, that I have to have either my sis or my BF, Lori, holding my hand. No, seriously. It sucks! Good news is that I'm almost done. So, I get to have the reconstructive surgery probably the first week of May! I can't wait. I know it's probably going to really hurt and take a long time to recover from, but I know I'll also feel relief from the expanders.
Here's a quick laugh for you: My 18-yr-old son, Michael, came home from college this last weekend. He gave me a big hug and then said "Your foobs are hard!" Yep, he called them foobs - fake boobs. I laughed so hard I almost choked! What a dork! (He's right though - it's like I have 2 rocks on my chest!)
That's it for the cancer update. I know I've promised to go back and document the journey from the first. I'm still planning on doing that. It's just hard to think about and read my notes from that time - very emotional. I'll get it started soon though. It's actually a very interesting journey.
I haven't said it for a long time, but it is still true... cancer SUCKS!
Friday, March 6, 2009
The Past and Pending
Several things have happened in the last few days to make me feel happy. Yesterday, as I was driving south on I-15 in Utah Valley - towards Provo - I realized what an incredibly beautiful day it was. There is nothing like a sunny Utah day - one that comes after a stormy day. The stormy weather clears the air and it's breathtaking - the mountains, covered in snow, are majestic and it just makes you feel so good. So, because I was feeling great, while I was driving to Provo, I started thinking about the good things that have happened that make me happy. I'm kind of tired of being sick, upset, tired, etc. from the cancer, so I've decided to try to be happy and grateful instead. Hmmm....no wonder I feel good!
First of all, I'm through the hardest part of this cancer journey. Finally, I'm through with the chemo. And I'm actually starting to feel better than I've felt for months. In fact, this morning I went for a short walk! Something I haven't been able to do for 8 months. Then, yesterday, I noticed some stubble on my legs. Now, this might sound like bad news to you, but to me it's great! It means that my hair is starting to grow back. I shaved my legs in October and haven't had to shave them since then!
My baby, Matthew, turned 12 this week. He was the last kid to be in both primary (in church) and elementary school. It was a big step for our family. I'm excited for him, but it was kind of bittersweet. I'll have to blog about that some other time.
The thing that has made me those most happy this week is that my missionary son comes home in two weeks. I've been thinking about him every day and it just keeps getting closer. I can't wait. I haven't seen him in 2 years. And I've only talked to him on the phone 4 times.
Yesterday, I was reading a new blog that I'm following and the blogger is so positive and such a good writer. It made me really want to be happy and improve myself. So, here are a few goals I'm going to try to accomplish:
I'd like to be more positive. Even if I'm not feeling great, I'm going to try not to tell anyone that. I think people are just tired of hearing how sick I am. :-) I know I am. I'm feeling great. I'm feeling good. I'm feeling ok. Those are now my only responses. Although, I reserve the right to complain a little after my reconstructive surgery.
I'd like to do a few things each day that will contribute to my recovery and help to make me feel better. I'll try to walk each day. I'll try to remember how much I've been craving water for the past 5 months and drink lots of it every day. I'll try to eat fewer fast food meals and more fruits, veggies, and other good stuff.
I'd like to help my skin to recover. Most especially, the skin on my face. So, I'm going to go find some really good anti-aging type lotion and use it every day. Wrinkles and brown spots - watch out!
And finally, I'd like to become a better blogger. I had a hard time sleeping last night because I was thinking of different things I could blog about. I want to blog about a different thing each day of the week. I'm still working on the schedule, but some of the subjects are: a Family Home Evening lesson (Sundays), a Book of Mormon post or a missionary post (Mondays), My Cancer Journey and Cherish Bound stuff (Tuesdays), Almost Wordless Wednesday (highlighting some of my sons' photographic skills), Book Review - probably on childrens books, because I have such a huge collection of them (Thursdays), Helpful Fridays (things like recipes, quotes, tips, etc), and then on Saturdays you'll get an update on each family member. Phew! I'm really excited to start!
Just writing this blog made me feel good. If you'd like to check out the blog I was reading that motivated me, look under my Blogs That Rock on this page and it's called C Jane Enjoy It.
Oh, one more goal: ever since I was diagnosed with breast cancer, I've been wanting to share my story with other people, in the hopes that I can help someone. I would absolutely love to be able to speak to groups of women about the importance of early detection of breast cancer. So, I'm going to work on a presentation and make sure my information is all updated and figure out what I would share. I think it would be good to start with the womens' group in the LDS church, since that's who I'm surrounded by here in Utah. If you know of a group that would want to hear my story, let me know. I can't wait to start helping other people.
Have a great day!
Thursday, March 5, 2009
Cancer Scars
There are the scars on my chest:
I’ve got one that is about 2 inches long where the surgeon took out some lymph nodes. There is the scar where I had my two biopsies. That one is no longer there because it was cut off when I had a double mastectomy. But, I still see it. There are my mastectomy scars – just horizontal lines where something else used to be. I’ve got two small scars from the drains that were left in after my last surgery. And then there are the upcoming scars – from my reconstructive surgery and the one I’ll have when they take out my IV port. I can already see them.
The other scars cancer has left:
The scars on my face – commonly called wrinkles – I have so many new wrinkles that you’d think I’d aged 10 years. These make me particularly angry – I’ve been blessed with my mother’s beautiful skin and now it’s ruined. There are tiny brown spots all over my face and hands as well, reminding me, every time I see myself, that I’ve had cancer.
Sometimes I feel like there is a scar where my mind used to be. I’ve never had a great memory, but this is ridiculous. Believe me, “chemo brain” is real.
The scar that is my bald head. I know that the hair will grow back at some point, but the scar that shaving it off caused will remain in my mind.
The chemo has affected my eyesight – I can feel those “scars” getting bigger by the day.
If I had a dime for every time I’ve been poked with a needle, I’d be rich. Those needle scars are too small to see, but they are there.
And what about the scar that I have from being thrown into early menopause from the chemo – I feel that scar every time I have a hot flash.
There’s even a scar from when I had to stop working. I used to work at a job I love, with people I love. It’s a long scar – 8 months long, and getting longer by the day. Even though I know I’ll get to go back to work, the scar that is ‘lack of work’ is there.
The other night I turned to Rick and said: “Sometimes when I look at myself and see that my chest is gone, I think, “What the HELL??!!! What was I thinking, allowing that to happen? Sometimes I wish I could go back and make a different decision.” And Rick just says, “I know… I know.” And he does. He knows what I’ve been through. He’s been there to help me make every hard decision and to get through every horrible side effect. And I have to say thanks to Rick, for being there to walk me through the scars and help me through the anger.
Wednesday, March 4, 2009
Side Effects
It’s been 3 weeks since my last chemo treatment and I’m feeling ok in the mornings, but by afternoon I’m exhausted and sick to my stomach. I was really hoping that I’d be feeling better than this. I’m a little impatient. In fact, I’ve been wondering why my hair hasn’t grown back by now. :-)
Monday night, I had kind of a break down. At least it was only in front of Rick – not the kids. I was feeling overwhelmed because of my schedule for Tuesday. I was feeling like a loser mom because it was my baby’s 12th birthday (Matthew – my youngest) and I hadn’t even shopped for gifts yet. He was going to wake up in the morning and not have presents to open. I’d just been too tired to go out. Then, I realized that I had a stupid para thyroid scan on Tuesday that would take half the day, and then district science fair, where Matthew’s project needed to be set up (the same time as the dr apt), and the art show at the junior high for Alex. There would be no time at all to do anything for Matthew’s birthday. Plus, just looking at the schedule made me tired. As soon as Rick walked in, I started crying. I’m such a baby! He asked me what was wrong and I couldn’t even find my voice. I just whispered that I’m so tired of being sick and I’m so tired of being tired. I’ve had it. Then I told him about the schedule for the next day and he said “Well, you just can’t do it all. Take something off the schedule.” Ok, what would you take off? The dr. appointment? The science fair? The art show? MATTHEW’S BIRTHDAY?! Geez! Not to mention, I still had shopping for gifts and making a cake. I finally decided to ask for help from my friend Lori (she set up the science fair project – actually Steve and Jeff did – thanks you guys), and to keep Matthew home from school and take him with me – we had a great time, shopping for presents and going to lunch in between scans at the doctor’s. Everything worked out ok – Rick came home early to help with the last part of the science fair and the art show turned out to be tonight instead of last night. I even made the cake and ordered pizza before I completely collapsed from fatigue.
Fatigue is one of the lovely side effects you have from chemo. You know, I’ve just about had it with side effects. When you meet with your oncologist the first time, he’ll tell you about the side effects. I’m pretty sure he told me about not only the immediate side effects, but also about the long term side effects. I just don’t remember much about those long term ones – probably because one of those is what they call “chemo brain” – where your brain basically becomes mush and you forget everything. I’ve been suffering from this particular one almost since I started chemo. I forget everything. I’m amazed that I even remembered that it was Matthew’s birthday yesterday! Other long term side effects – a weakened heart (from the Herceptin), wrinkles, early menopause (which includes hot flashes!). I know there’s more, but I’ve FORGOTTEN what they are! I just know that there will be constant reminders of the beast.
I was watching a short video the other day that my son, Grant, sent home from Japan (where he’s serving a mission). The camera was pointed at a store window and inside was a huge dragon head (one of those that are made from paper), that was moving from side to side while the eyes lit up. All Grant said was “Holy crap – it’s a dragon!” That’s kind of how I feel about the cancer: holy crap – it’s a dragon! And the side effects are the fire that spews forth from it’s mouth.
Here’s where I say that I’m really grateful that there is even a thing called chemo – it’s saving my life. And I know I’m a big whiner, but sometimes, in order to fight the beast, I’ve got to let some feelings out. I’ve got to get things off my chest (literally).
Thursday, February 12, 2009
Sayonara to Chemo!
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
Wednesday, January 21, 2009
Power Surges (Hot flashes)
Thursday, January 1, 2009
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


