Happy Birthday, Maja!

Well, Maja turned 1 year old on Wednesday the 12th. I can't believe it's been a whole year. We had a wonderful party with balloons, cake, and tons of flashy toys. Her brother Tristan was a little (ok, a LOT) jealous and actually had a breakdown by the end of the day. I'll blame some of it on the sheer amount of sugar he ingested. Maja ate a whole piece of vanilla cake with buttercream frosting and strawberry cream filling.

It's funny, today is Monday, March 17th, and I totally forgot that yesterday was a year since I was diagnosed. I was working up to it all week and wondering if anyone would remember. Turns out I forgot about the cancer! Wow. I never thought that would happen.

Cancer has consumed my life completely since I was diagnosed. I was "the girl with cancer" for so long, even when I didn't have it anymore. When you're a baldy everyone knows you're a cancer patient and you can't hide from it so you embrace it. Now my hair is growing back and I don't look sick anymore. And so I forget. I forget about the pity and self-pity and the constant fear. Now I am a mom. Maja is one year old and it's about her. Thank god.

What Motivates You?

Just came across this blog from a girl who is in remission from Scleroderma and plans to run a marathon next weekend.

http://gottarun26.blogspot.com/

Why? Because she can!!

Checkin' In

I've been so busy lately!! I haven't had time to keep up the blog since I've been back at work. I feel like my brain is starting to get back to normal, though. I'm spending a lot of time getting back up to speed at work and still be a mommy.

My hair is growing back and I actually used product on it for the first time today (but it didn't do anything). It's dark on top and blond on the sides. Weird.

Not much to say right now...more later!

It's Official: I'm in Remission!!

Just got the mark of approval from the ol' doc. She says I won't need exploratory surgery to check for anymore cancer and the CT scan was clean! Wow. I never thought the word "remission" would make me so emotional.

Now I have bloodwork every 3 months along with girlie checkups and some routine yearly mammograms for the rest of my life. Once I hit the 5 year mark without any sign of cancer (October 16th, 2012) they will consider me CURED. Holy shit.

Cause I'm the Mom Song

http://www.youtube.com/watch?v=anSpBUxsgAU

10 Things I'd Like To Do Before I Die

1. Show my paintings in a gallery.
2. Take my kids to a foreign country to volunteer our time and energy with a program like the World Hands Project.
3. Build and live in a Green house.
4. Start and run my own web design and development business.
5. Run a marathon.
6. Talk to my parents about some things that are tough to talk about.
7. See my kids graduate from college, get married, and have their own children if they choose to do those things. I just don't want to miss the good stuff.


(still working on 8 through 10)

What would you like to accomplish before you die?

I Love My Family

We walked 2 miles at the Whisper Walk on Sunday morning, and I was SO EXHAUSTED! We're standing in front of the poster with names and pictures of people who are being honored or memorialized. If you look close enough you'll see a picture of me right between us. It was very emotional for me to see myself on the poster. I broke down and bawled right there at the race amongst all those people.

I feel like I've been holding in my tears for 6 months and now I can cry. I've been afraid that people think I'm not thankful when they do extraordinary things for me and I don't cry because I'm normally so emotional. I haven't wanted anyone to see me cry during this, so I've tried desperately to control it. I guess I just don't want to have to deal with my feelings. Truth is, I'd do a lot of crying behind closed doors when no one was around.

Now I can't hold it in anymore. It's mostly because I'm so damn happy. I never thought I'd get to the end! It's here. There is some restoration my body has to go through, but that's easy. Now I am free. It's kind of a release that I feel; like I've been holding my breath but now I can breathe and it's nothing but fresh air. Ah, life. It is sweet.


EDIT: Here are some pictures taken from the walk by the KC Star.

Day 5: Home Free?

I went to bed last night after a short amount of time in the hot tub at my mom's house. I try to do everything I can do so that I don't have to take many pills since they all have side effects that are hard to handle. I had some hot chamomile tea in a Korean tea cup. I was so tired, but I had a tough time staying asleep because of my achy bones. I woke up several times in the night wishing it was morning already so I could just get up.

When I got up in the morning, I felt like I had a new lease on life. I knew that if I could just make it through last night I would wake up on the other side of the hill. Of course I felt much better, but I also thought I was superhuman and overdid myself a bit. By the end of the day I had also developed several mouth sores that were intensely painful! I swished with my Magic Mouthwash a couple of times before bed. I didn't take any pills the whole day except my daily Synthroid and Celexa. I'm feeling good.

Day 4: Feeling the Pain

Same as yesterday, but more intense. Dan's been giving me my pills. I'm not sure what I took because I can't remember what I asked for. My tummy hurts and I can't, uh, use the restroom. That's painful. I'm really, really dizzy. Probably the most dizzy I've been so far. I had a bad day emotionally too.

My mom came to pick me up to take care of me at her house. I got my stuff together and went to lock the door from the outside. I was so confused that I couldn't figure out which way to turn my key to get it to lock. I was just turning it left and right, back and forth, not understanding what was going on. I broke down crying because I was so frustrated. I feel like I have Alzheimer's Disease. It's almost over, though. Just a couple more days.

Day 3: Duh....

Ok, so yesterday was pretty fuzzy. I felt pretty terrible the whole day. I had major body aches and dizziness. I can't explain in detail (mostly because I'm so confused right now) so I'll summarize.

Dan now has to give me my pills and I'm not allowed to touch them without his assistance. I took my steroid and had to take a Lortab for my achy back and knees. It's like a deep, annoying, jittery ache. Feels like arthritis.

I had the worst night sleep so far. I kept waking up and wishing it was morning. My body hurt, I felt nauseated, my legs were jittery, I was grinding my jaw, and having bad dreams. If I can just make it through one more day...

Day 2: Feeling Fuzzy

On Tuesday, I woke up feeling pretty good. I took my thyroid medicine before eating, had my breakfast, fed Maja, then went for a walk with Maja in the Snugli. By the time I put her down for her first nap, I was tired. I took 1 Dexamethasone steroid at lunch. I meant to take it with breakfast but forgot. My plan was to take one with breakfast and one at around 3 p.m. so it didn't mess with my sleep.

I started feeling a little fuzzy around noon. When I get this way, I can't remember when I've taken pills or what I've taken or who I've talked to or any small details. I have to make sure someone is in charge of my pills so I don't take the wrong ones...that happened last time.

Before bedtime I took my Celexa anti-depressant, and a Lorazepam which is for anxiety. It helps me relax so I can get to sleep. I went to bed at around 11 p.m.

The day after chemo is usually a pretty easy day. Not bad.

Day 1: Chemo Day

I woke up at 7:45 a.m. to both kids already being up and mostly dressed, fed, and cleaned up by Dan. I ran in to take my Synthroid medication first thing for my thyroid. I take it daily. When Grandma June arrived to watch little Maja, we took Tristan to school and headed to the Cancer Institute.

When we checked in for our 9:30 a.m. appointment, there was a woman in the waiting room who said she was nervous since this was her first time. She seemed flustered. I gave her my name and number and a little hug. This sort of thing happens a lot at the Cancer Institute. For some reason, once you walk through those doors, even if you're shy or nervous yourself in the outside world, the patients are all family. They're the only people who really understand; the only people you can talk frankly to about when your hair will return.

I was called back to be weighed and had my temperature taken. There are like 20 la-z-boy chairs each enclosed by curtains that can be opened or closed for privacy. I sat in chair 8. There was a small chair for Dan next to me. We started taking some video of my nurse accessing my port which will be up by the end of the week. She took some blood and sent it off to be checked to make sure my counts were high enough to do chemo today. They were!! White blood cell count was 5 and we just had to surpass 3.

My nurse hung up the bag of pre-meds (mostly steroids) and plugged me in to start the drip. That took about 20 minutes. The pre-meds make me feel really weird and almost drunk. It's like I've had a glass of wine because I can't quite speak with the same cadence or pronunciation. Thinking slows down. Next she hooked me up to a bag of Saline to hydrate and flush me. All these fluids make me have to use the restroom about 3 times an hour. I think the Saline takes about 15 minutes or so, but I can't really remember.

Then they hook up the big glass bottle of Taxol, a chemotherapy drug made from the bark or needles of a Yew tree. This one takes the longest: somewhere around 3 or 4 hours. I usually bring my video iPod and watch TV pilots I download from iTunes. When I get too tired to watch, I take a nap. I was cold so the nurse brought me some heated blankets. So nice!! The weirdest part about it is my legs and feet start twitching about this time from the pre-meds. It's like that restless leg syndrome thing or something. The only thing that helps it is when my support giver (today it's Dan) rubs my feet and calves.

When the Taxol is finished, I get a quick flush of Saline again, then it's time for the next chemotherapy drug called Carboplatin. Carbo is a drug manufactured from Platinum. It's a much smaller amount that comes in a bag. It takes about an hour for that drip, I think. When it's over, they flush a bit more Saline in me. They remove the needle from my chest and put a small patch on my port. It was about 3 p.m. when I realized I was done. Holy SH!T, I'm done. I looked around and there was one other person left in the infusion area. All the nurses came over and gave me a neat little award with a star on it signed by them all to commemorate my being done with chemo. I was trying so hard not to cry. There's just so much emotion and I was not prepared. I felt like I was giving an acceptance speech, but I really just wanted them all to know how nice and sweet they all are, and how much they touch people's lives. What a tough job.

I galloped out of the office and into the elevator. As I took a step out of the elevator, I suddenly had a burst of tears. It was almost a feeling of freedom that was making me cry! The weather was nice and the wind was lightly blowing in my ear. I was so excited to be done. I got in the car, and removed my scarf. I still don't have hair, but I guess it was symbolic. In a daze, we drove home. Dan left me with Maja for a couple of minutes while he went to get Tristan from school. When we were alone, I looked at her and just started bawling. Now, this was a feeling I wasn't expecting. What I felt now, was this: I was FINALLY able to concentrate on being a mommy. I felt like I was holding her for the first time, and I was about to enjoy everything that babies do. Before, I felt like she had been given to me to help me through this cancer/chemo thing. I didn't like that feeling because no mom wants to depend on her child. It should be the other way around.

Tristan came home and said, "Did you have your last chemo today?" Wow, smart little bugger. We all went to the park and Tristan had his dinner there. I felt fine, as I always do the day of chemo. I'm usually just a little "fuzzy". We walked home with the kids in the double stroller. Tristan had a bath and Maja had a bottle. She went to bed, we read Tristan some books and put him to bed, and I just lounged on the couch.

I took my evening pill called Citalopram or Celexa which is an anti-depressant. It really makes a difference for me. Celexa helps with nausea, and I like to take it at bedtime because it also makes me sleepy. The day of chemo I am kind of buzzing from all the steroids and I have a tough time getting to sleep sometimes. I was so tired, but I knew I was going to have a problem sleeping. I also tend to have some issues with eating due to the nausea, but I hadn't had any nausea yet. Remember when I said I was going to be completely honest? Well, here it is and you may not like it, but this is what works for me. I (allegedly) ate a cookie made with Marijuana that comes from a lady in town who gives it away to cancer patients for free. It doesn't taste all that great, but it's better than smoking it. It helps to relax me and make my legs stop jittering. It's pretty calming and helps make me eat when I don't want to.

I headed off to bed and fell asleep pretty quickly which is strange for me the day of chemo. However, I woke up after about an hour with some achy bones. That's from the Carbo, I think. I wanted to get up and take a pain pill, or a Tylenol PM, but it must have got away enough for me to fall back asleep.

Whisper Walk for Ovarian Cancer

It turns out there is a walk for Ovarian Cancer in the Kansas City area. It is called the Whisper Walk for Ovarian Cancer and it will be held September 23, 2007 at Zona Rosa shopping center. To sign up, visit www.sportkc.org.

For those who don't know, Ovarian Cancer is known as the disease that whispers because the symptoms can be misconstrued and the disease itself is hard to diagnose. Most people hear "Ovarian Cancer" and think death because it is typical that it is not diagnosed until the latter stages when there is a smaller survival rate.

However, there are some pretty consistent symptoms that, when experienced, should be investigated.

These include:
* Bloating
* Pelvic or abdominal pain
* Difficulty eating or feeling full quickly
* Urinary symptoms (urgency or frequency)


I've found that the most important advocate for your health is yourself, so if you are concerned about Ovarian Cancer, press for more testing until you are satisfied. In my case I had a bulging abdomen, (what I interpreted as) back pain, and extreme fatigue but I dismissed them as symptoms of pregnancy so I wasn't questioning anything. Bottom line: report any symptoms (whether they whisper or yell) to your doctor. If you think something is wrong, keep checking. You are your number one advocate!

Guess What

I went in to get my last chemo today at 9:30 a.m. and my white blood cell counts were too low again. Instead, I got another 2 hour drip of iron at the hospital and a shot of Aranesp in the belly at the Cancer Institute. I'm going in tomorrow afternoon to get a new shot in the belly called Nupagen (sp?). It's supposed to help my white blood cells to get a boost so we can do chemo on Monday the 17th. It will then be 5 weeks between treatments. I'm starting to really get weary. Can I do this?

My Poor Body

The treatment is often worse than the ailment. Do you know what it feels like to run a race and give it all you've got, and when you get to the last stretch and you have nothing else to give you just try and make sure your legs are moving even if you can't feel them? Well that's how I feel. That finish line is just ahead but I can't get there fast enough.

The bloodwork that I had done on Monday indicated a couple of new things beside the low blood counts. My TSH, or measure of my thyroid, is 0.04 and should be at least .5 or so. That means that even though I don't have a thyroid, my medicine is making my body think I have an overactive thyroid. Not a problem, I just need an adjustment on my medication. But that does explain the extreme sleepiness and dragging I've been having.

Also, my iron studies are low. So low, in fact, that I had to go to the hospital today and sit around for a couple of hours getting an infusion of the tar-looking substance. I'll have chemo tomorrow at the Cancer Institute and then go to the hospital the next day for more iron. That should help the bruising and other symptoms. I *think* that's it for infusions. I'll just have to make it through the next couple of weeks and try to get healthy.

For some reason I've been finding myself thinking of myself as two parts in the whole: my soul/mind/aura/whatever and my physical body. It's almost as if I am two different people. I used to not have this division. I am a true believer in the mind-body connection. I guess I feel a little betrayed by my body. I feel like I've treated it pretty darn well, and what do I get in return? Cancer. And now, during chemo, my body is not listening to my mind again. I'm trying to heal and understand what my body is whispering, but it's almost like it's speaking a different language all of a sudden.

Clinical Research Trial for Ovarian Cancer Patients

I was asked to post this link about a clinical research trial for a drug called phenoxodiol used in patients with recurrent ovarian cancer, fallopian tube cancer, or peritoneal cancer. I don't know much about it so I can't give an opinion on it or any clinical trial program, but I believe that more information and education is better than less.

http://www.ovaturetrial.com/

There are links to study locations as well.

Damn Blood Counts

I got a call today at 7:45 a.m. from my nurse practitioner saying my white blood cell count was too low and I can't do chemo today. It was 2.3 and it needs to be 3.0 at the least to do it. Argh!!! I can't describe the feeling but it's somewhere around disappointment. No one likes to receive chemotherapy but I'm so ready to be done. Every time they postpone a session, I have to postpone going back to work.

Anyway, I will have to go back on Thursday to do chemo and run my bloodwork when I get there to make sure it's high enough. Luckily I don't have to do it next week. I don't think I could wait any longer!!

The Journal Begins

I said I was going to keep track of chemo week meticulously, so here goes. Chemo isn't until tomorrow (Tuesday), but the day before chemo I always have to go in and do bloodwork. I've been going to the lab where I receive my chemotherapy infusion to do my bloodwork because I worked out a special deal where I don't have to pay my co-pay ($35). I have to do bloodwork once a week so the co-pays add up. I also pay a co-pay when I do chemo every 3 weeks and when I see the doctor.

I found out that if you go to an alternative lab to do bloodwork, they can charge different prices. I found one nearby that only charges me about $5 total. When I couldn't even afford that, the Cancer Institute worked out a deal with me so I wouldn't have to pay anything if I went to their lab instead. Whew!

They draw my blood through my port in my chest. Today they took 2 vials of blood and flushed it with saline. I can taste it when they give me the saline. They'll check my CBC and CA-125. I also asked them to check my thyroid levels per my doctor to make sure my thyroid medication is working for my body.

The needle kind of hurts going in, but it's not as annoying as having a needle in your arm. Someone gave me some Lidocaine gel for some mouth sores before I got the Magic Mouthwash (don't get me started on how awesome that is!) so I'm going to rub it on my port tomorrow. I don't know if it will work, but I'm going to try it out. It gets sore if I have my port accessed two days in a row.

Stay tuned!

Chemo Postponed a Week

Well, I went in to have my last exam and chemotherapy treatment today and I got the good/bad news that it would be postponed a week. My platelet counts were 65,000 (they have to be 100,000) and my white blood cell counts were also low. They say it gets worse and worse toward the end and harder to recover between treatments. I feel pretty good; just tired.

So my doctor said she thinks I'm just fine and didn't notice anything abnormal. I will have a CAT scan 3 weeks after my last chemo. I will also have to have a colonoscopy and a mammogram. Not too excited about either of those but I'll get them regularly for the rest of my life.

So that's it. I'll take some video during chemo and record the daily goings-on and pill-popping starting Tuesday, September 11th. Can't wait to be done!!!