Accountability and an Awkward Topic

Since you were all a huge part in getting us through this last year, I think it's important that Terry and I stay accountable to you.

We are very transparent about finances. That's partly because of our "chatty" generation, and partly because of Dave Ramsey's influence. We haven't been shy in admitting our early financial mistakes and our attempts in the last few years to get things in order.

Before I was diagnosed this year, we paid off our car, were no longer paying credit card debt, and for the first time in a while, had a savings account that was growing. We had mastered Dave Ramsey's envelope system and we were, for the first time in years, not stressing about money.

But since we had just barely righted ourselves, this illness was all it took to send us back in this area. We were at the store the day before my mastectomy and I got a call from the hospital letting us know what our part of the cost of the surgery would be. I was mentally and physically exhausted, and the number the woman gave us felt so high. I ended up sitting on the floor of the store with my head in my hands, thinking, "How can I pay for this?"

Before we left the store Terry and I had prayed and left it up to God.

And as an answer to our prayers, so many of you were there for us financially. You sent checks and giftcards, sometimes with explicit instructions on what to spend money on, and sometimes not.

And even though we're far from perfect, we tried to use your gifts the best way we knew how. And oddly enough, the last two non-fiction books I've read have been about money within God's kingdom and Terry and I are excited about what God's teaching us about it.

And so, since so many of you have blessed us (and we pray you're blessed a hundred times over for it!) we wanted to take a moment to let you know that, yes, we are going to Disney World. But no, we are not paying for it.

You may think it's silly for me to address this topic, but I wanted to be very clear that we haven't taken any monetary gifts and shoved them into a vacation fund! We are blessed that my Dad and Step-Mom offered to fly all four of us to Orlando and they're treating us to a stay in a beautiful condo and four days at the parks. We don't deserve a trip, but we're so very grateful for it.

And I wanted to be accountable to you. You've prayed for us, served us, and sacrificed for us. This wasn't just my journey, but all of your's too. Terry and I will be accountable to you, not just financially, but spiritually as well. We want to use what we've learned the best we can so that all of your hard work and prayers are honored.

Yowza!

(There are pictures below of the effects of radiation. They might make you a bit squeamish. Please know that none of the pictures are of anything innapropriate. Even if I was left with any normal feninine features in the mastectomy area, these pictures would still not be of anything indecent-- just the skin around the area where the tumor was.)

Ok first I'd like to ask for prayer to continue this blog. As my treatment nears its end (only 5 more radiation treatments to go!) I feel more and more like I am ready to leave cancer behind. And much less willing to keep up a blog on it. But it's something I feel called to do. In the beginning I wrote because I wanted an easy way to keep family and friends updated with my progress. Then it became an outlet for my scariest thoughts.

But frankly, it's been really difficult to focus enough on the fears to write it all down. I've learned many lessons, most of them have been recorded, but plenty of them have been too hard to face, much less write down. However, I've continued to feel God urging me to share. I'm constantly reminded by the statistic that 1 out of 8 women will get breast cancer. So maybe I'm in a position to help some of those women just by being transparent in my own journey. But, like I said, it's pretty darn painful to face my fears and allow myself to reflect enough to write about cancer. So I'd appreciate your prayers.

Now on to the "Yowza" part...

Radiation has mostly been a breeze. I've recounted over and over again how lucky I am to be mostly numb in the affected area so that I didn't have pain from the get-go. But now I can REALLY say that I am more grateful than ever because now the pain is creeping up above the numbness and I tremble just thinking about how difficult it would have been to feel this pain since the beginning of treatment 5 weeks ago!

Here's what my skin looked like a few days ago when the pain first started to flare up (up to this point all I'd felt was a soreness and tightening) And no, this is not a picture of any underarm hair. This shot isn't even high enough to include that part of my body, and even if it did, there's still no hair there. If you really want a good look, you can click on the picture and see it upclose where you can tell that you're looking at blisters and peeling skin: (I honestly don't recommend looking any closer though. Although for some reason I imagine Crystal G. and several others of you 'medical types' being interested. = )
 
Here you can see the variation of color in the skin being treated and my normal skin. The purple line on the side is just one of the lines they use to get me in the same spot every day for radiation.

And here's what that same spot looks like today:

Up until today I've been able to use just aspirin but today I had to move up to the "good stuff!" Being at home where I can wear a loose shirt is much better than being out because my bra moves against the bad areas and the weight of my prosthetic hurts a lot. I'm glad my kids are as young as they are because if they were any older and had more awareness they would be scarred forever by the sight of me reaching into my shirt to yank my prosthetic out to get a little relief!

And speaking of my prosthetic, I'm going to post pics of it. Sorry if it's offensive in any way. To me it's just plastic and I thought some of you might be curious. Prosthetics for breast cancer are known commonly in the bc community as foobies (f for "fake").

Here it is...

And here it is in it's little cover that I can take off and wash. You can see the purple stain on the bottom of it. That's because the marker for radiation rubs off onto it.

I think I mentioned that about two weeks ago (or has it been three now?) that I lost all of my eyebrows and eyelashes. I thought that was so odd considering chemotherapy was well over and the rest of my hair was growing back. Thankfully my lashes and brows started growing back almost as soon as they fell out. I'm so thankful for this because losing these things was worse for me than losing the hair on my head. Here you can see that my lashes are growing back (and you can see the few tiny long hairs I've still got which, yes, I've still been putting mascara on!).

And this is how much hair I've got today. Every morning when I look in the mirror I can see how much it's grown. Terry and I love to rub it because it's coming in so super soft! It's still really thin so I'm not quite ready to go without the wig yet.

So to sum up-- Ouch and Yowza!!-- radiation is a bummer! But my last 8 treatments are just to doobie (the mast. area) so the other skin can start to heal. When I was first diagnosed a lot of survivors reached out to me and I remember one of them saying that radiation was only a big deal to people who hadn't gone through chemotherapy as well. I guess that's true. Chemo was 20 times worse, but radiation's no picnic either!

A Change in Taste

At my last meeting with my nutritionist we discussed the likelihood that my PCOS (polycystic ovarian syndrome) is the highest contributing factor to me getting cancer. Namely because women with pcos have a large amount of estrogen compared to their progesterone. And breast cancer is a hormonally-driven cancer where estrogen matters a lot.

If you want to know more about how PCOS-related insulin resistance also likely contributed to me getting cancer, read the next paragraph, if not skip down...

Scientists believe that the components of Insulin Resistance and Polycystic Ovarian Syndrome actually favor the growth of breast cancer cells, creating an environment ripe for the development of this disease. While studies are still on-going, preliminary data suggests that increased levels of insulin in the blood increase the formation of breast cancer cells.

My nutritionist will be closely monitoring my hormone levels from here on out to make sure I stay out of that danger zone regarding my estrogen.

But the insulin issues- well, they're mostly taken care of with diet. Which is why everything I'm eating lately has almost no sugar or wheat. I'm eating very little carbohydrates and very little red meat. And fruits and vegetables are, of course, most important.

So far it's been easier than expected. (Of course, I've had the best motivation possible- staying healthy during chemotherapy!)

Some of my best discoveries:

-Smoothie King. My Starbucks addiction has taken a major hit and Smoothie King has luckily been there as a replacement. All last week I enjoyed a Starbucks mocha nearly everyday to celebrate chemo ending, but now I'm back on a no-sugar diet so I settle for the Mocha Coffee Smoothie (with no turbinado) at Smoothie King instead.

-Quinoa pasta has been my favorite health food find. Pasta is a big no-no. Even whole wheat pasta. Thankfully my love for Top Chef came in handy and I remembered a gluten-free episode that featured pasta made of Quinoa. Quinoa is a protein (something I'm supposed to consume a lot of) and the pasta tastes (to me anyway) just like regular pasta, maybe even better! It looks like this...

and you can get it at Kroger. And it's also organic!

-Sweets are completely restricted but I found that sometimes I just need something chocolate! Lucky for me I found Endangered Species chocolate bars that are organic. If I buy the ones that are 88% pure cocoa, then I can eat half a bar for only 5 grams of sugar. I usually can't even eat half a bar though, so this is a pretty healthy alternative to sweets.

I found a tip online today that I can't wait to put into practice. The suggestion is to grate vegetables into all of your recipes while you cook so everything has double the vegetables, but the thin slices don't change the flavor much.

If you know us personally, you'll understand just how many groans have risen from my husband's side of the table lately. He's doing a good job at least trying most of the food I've been serving up. But we've got a long way to go before I get him to give up all of his sugar-packed, preservative-stuffed snacks like Dr. Pepper, Frosted Flakes, and honey buns!

Our game plan-

We're trying to make eating differently more fun so we've made it into a competition. We're going to start combing the health food websites for interesting recipes. Terry and I will each take turns cooking some of the more challenging dinners and we'll keep track of who makes the most delicious meals. We haven't decided yet what the winner gets though. Probably just some guilt-free cash to spend on whatever we want!

Catching Up

It's been a long time since I've written an informational blog and I've been getting a lot of questions.

1.What does chemo feel like?

It doesn't feel like anything going in. There's still a loud pop and a sting when the needle goes in my port, but it's not much more than getting a shot. By the time I'm done getting all the meds and chemo liquids through my i.v., I'm tired, but on a bit of a high from steroids at the same time. The first two signs that it's hitting me are a headache and a smell in my nose that stays with me until about day 9 of the cycle. The smell is accompanied by a feeling in my head that I can't explain. As the days go on, I get nauseous. This is the worst. Everything tastes bad (even water!) and I constantly have a bad taste in my mouth. This usually goes away around day 10. But I've noticed that as the treatments progress, my taste is getting worse and worse and there are fewer and fewer things I can eat, even between cycles.
I get a lot of side effects that remind me of the last trimester of pregnancy: heartburn, tiredness, achiness, constipation, etc. My eyebrows and eyelashes are just now starting to thin. I haven't had to pluck my eyebrows in about 6 weeks. I shave my legs maybe every two weeks. My head is covered in mostly bald patches, but there are still some hairs that are hanging on!

I've noticed that these last few weeks since chemo #3 I've seen a big drop in strength. I was playing around with friends the other day and was shocked to realize that it takes all my strength to jump about 2 inches off the ground. And two days ago I was getting gas and was too weak to pump a full tank. Holding the nozzle into the hole drained me and I could only do half a tank! A bit disheartening to keep getting weaker and weaker...

2. What's this diet you're on?

Thanks to Paul's advice, I've been going to a nutritionist. He ran every possible test on me during my first visit. And because of the effects of the chemotherapy and my unrelated Polycystic Ovarian Syndrome, just about everything in my body is messed up: my cholesterol, iron, hemoglobin, red and white blood cell count, liver, gall bladder, creatinine, vitamin D, vitamin B1, B6, B12, glucose-insulin reactions, cortisol, progesterone, and because of PCOS my estrogens 2, 4, and 16 are completely off. So, I'm taking 29 pills a day. (Here's the list for you medical nerds out there: glutamine, metabolic synergy, B12 Folate, Vitamin D Supreme, C3 Curcumin, OmegAvail Ultra TG, CoQnol.)

All of that sounds really bad, but I'm assured it's not. I'm hopeful that the vitamins will knock my numbers back in order in 6 months or so and I'll get to slowly decrease what I'm taking.

He's also got me on a "lifetime" diet that is very low in sugar/carbohydrates (due mostly to PCOS, although many people believe cancer builds on sugar) and high in fruits and veggies. I'm eating more organic and trying to avoid preservatives. I rarely eat red meat and consume a lot more fish. All on doctors orders. (My onc. says that this diet will make me healthier "for sure" but doesn't propose that any of it will necessarily keep me cancer-free. From what I've read otherwise, I do believe diet and nutrition plays a big part.)
This nutritionist is "out of network" with our insurance, so anyone who has been SO wonderful to send us money, please know that this is probably where your gift is going. You're helping to keep me healthy!

3. Are you going to do radiation?

Yes. My onc recommended it. I visited a radiation onc last month and his opinion is that 4 out of 5 cancer docs would recommend radiation. I will be doing it in Cypress for 6.5 weeks every weekday. It's been weighing heavily on my heart what we'll do for childcare during this month and a half when I'll need to be out of the home for 1.5 hours every day. So please pray for that.

4. Then what?

After radiation we will make a final decision about reconstructive surgery. Since my BRACA tests were negative we won't remove my ovaries. Jury's still out on prophylactic mastectomy on the right side. I won't make a final decision on that until after another consult with a plastic surgeon. As far as reconstruction goes, I will likely have a TRAM flap operation. (as opposed to regular implants.) We don't know if we'll opt to do this surgery at the end of the year or not. While it is verrry appealing to get it over with in 2010, I don't want to be recovering during the holiday season. But, if we wait and do it in January then our medical deductible starts over. So timing here is unclear.
Then I will do treatment that I think my onc has referred to as "bone glue" before and we haven't really gotten into. It's a period of either shots or pills. And lastly comes five years of a pill called tamoxifen. At this point, if memory serves correct, I will have about a 70% chance of being in remission for good.

Whew! I think that covers your bigger questions.

Blah, Blah, Something About Chemo 3...

Thanks to all of you who prayed for me during the last few days. I think word spread pretty fast, but for anyone who doesn't know, I came down with another infection and had a fever of 102.1 that Tylenol wouldn't bring down. I was thisclose to being back in the dun, dun, DUNNN.... E.R. again so I was miserable! Thankfully my temp never reached 103 and my onc. let me stay home and recuperate away from hospitals!

I did have a follow-up appointment yesterday and learned two things that scared/annoyed me. Will write about that later. Keep sending prayers because all of this has been going on at the worst possible moment with Terry- he's got clients in town and a scheduled full of meetings so he hasn't been able to escape the office to be with me.

I got emotional at the oncs office (probably more from feeling so badly and less from Terry's absence) and cried almost through the whole thing (I know- big weenie). Had some trouble convincing onc. that I don't need an anti-anxiety drug. Although maybe I do cause I meant to ask Terry for my Zofran the other day and accidentally said Zoloft. Freudian slip? :)

No actually, my mood is ok. (It's the body that's not!) Things get me down momentarily but God is so faithful and merciful to keep holding my hand so I'm doing ok. And who couldn't cheer up around my blonde boys?

Hair Loss

I always knew that most people on chemotherapy lose their hair, but I never really thought about the process. So here's what I went through for any of you interested...
My onc. said I'd lose my hair by three weeks from my first treatment. I first noticed it starting to fall out when we were in the emergency room which was about day 6. I remember looking down at my pillow and seeing that it was covered in hair-- probably about 20 strands.

Over the next few days I noticed extra hair in my brush and strands of it on my clothes and pillow. About 2 weeks into treatment I could run my hands through my hair and pull out about a half a dozen strands every time.

My onc. had warned me that many people "poo-poo" the emotional effects of hair loss and that I should be prepared for it to be a bit traumatic. I think, at this point, when I was pulling out handfuls at a time, my first thought was that losing my hair made me feel sick. It seemed like a visible, tangible reminder that I'm not well. And that bugged me more than my impending baldness. By 2 weeks and 1 day I was shedding really badly. Hair was getting in my food, on my toothbrush, on the furniture. I even found a strand wrapped around Caleb's pacifier. At this point, I thought that shaving it off sounded like it would be a relief. Anything would be better than being reminded of my illness everytime I saw more hair fall to the floor. Plus, by this time, the hair I had left on my head was thinning a lot and I couldn't really style it anymore anyway.

I'd hoped my hair would last through today so I could go to church one more time with my own hair. But when I took a bath Friday night and saw how much hair was in the water, I gave up and decided to let Terry cut it off.

We'd been telling Micah that I was going to lose my hair and I thought it would be better for him to see me have it cut, so he was there when Terry pulled out the scissors. He's the one who took most of the pictures. Here's my "Before" pic. My hair looks surprisingly full because I'd just washed and blow dryed it.

Terry started with the scissors first.

What do you think? Does Terry have a future in hair styling?

I think God must have given Terry and I both blinders. Because at this point, when my hair looked like it does above, we both kept saying how good it looked and that I might have to cut it this short someday when it grows back. Seriously. We thought I looked kind of punk. =)

Pretty funky, huh?

And here's the finished product.

You can see how thin it is.

And here I am in my wig.

I've worn the wig for two days now. I wore a scarf for a little bit yesterday but Micah said I looked like a pirate in it. Caleb hasn't seemed to notice a difference. Wig, shaved head, scarf, it's all the same to him. Micah actually liked my shaved head so much that after Terry finished cutting my hair, he asked for the same cut.

So now we're sporting the same hairdo. I was in the bathroom helping him brush his teeth last night (I wasn't wearing a wig or scarf) and he looked up at me in the mirror and said, "You starting to look like Daddy!" Ha!

It won't be too many more days when what's left on my head is gone too. If I reach up and pinch my hair, I can pull it out by the root without any effort. I can do the same to the hair on my arms. It just pulls right out. Weird. I'm not really very bothered by any of it though. I take it as a sign that the medicine is working. People have told me how hot the wig is and I'm sure if I were outside for a long time I'd agree. But so far (which is only 2 days) the heat doesn't bother me as much as the tightness of the wig. It gives me a headache after too long. But maybe it will loosen as I wear it. I gotta admit, I do like not having to blowdry or style my hair in the morning. It's kind of nice to just set my hair on my head and go! And I get to pack up my blowdryer, straightner and curling iron! My bathroom counter will be so nice and empty!

My onc. says that my hair will start to grow back almost exactly three weeks after my last chemo treatment. Which (if we don't get knocked off schedule due to low white blood cell count) will be September 23. My hope is that I'm wig-free by Christmas. Although, who knows, I might enjoy it so much that I become a wig person!

Update

More bad news, but man, does God show up!! That's it- I could end the blog there. GOD SHOWS UP!
My surgeon called tonight and said that my MRI results show that there is a lot of tumor left behind. And it appears that it's already in the nodes.

Bad news. We didn't take it well. But here's the God part...

We met with the plastic surgeon today and learned all there is to know about reconstruction of a breast. So, I know where we're heading. God was preparing the way.

I *finally* reached out to talk to a woman at church who is just months ahead of me in her diagnosis. I asked her how she felt about mastectomy and her words were simple but exactly what I needed to hear: "I decided I'll do whatever it takes to be here for my kids."

Well put.

And here's the best part of all. My surgeon didn't call until nearly 7 p.m. Guess where we were? Church. For small group. Our children were being taken care of and didn't need our attention. So we had our break-down moment in privacy. But just when we'd had all the privacy we could take, our awesome small group gathered around us to pray.

God built this day to protect us and prepare us for what He knew lay ahead. I wish you could see the strength my husband has when He leans on God. I am lucky to have been married to him for five years. Five years today. Never imagined this when we said, "In sickness and in health."

And finally, I talked to Ashley a bit ago. I'm not sure if she was trying to say this or God just spoke through her. But she reminded me that a few days ago I was so dragging my feet about lumpectomy versus mastectomy. I was praying to hear what God wanted. And Ashley said that this may have just been God's way of answering my question.

So, I'm off to bed now. Whirlwind day. Tomorrow will be better. Tomorrow I get to start attacking this stuff. Tomorrow I get my portacath which means chemotherapy is right around the corner. Bring it on! My disease may be big but I've never questioned that my God is way bigger.

Pray tomorrow. I'm counting on you all to call out to God for us.

Lotsa Helping Hands

I've got a site set up at http://www.lotsahelpinghands.com/c/625677/.
It's where you can learn about our needs and how to help out. We need babysitters for three occasions in the next two days.

If you'd like to be added to a list of people who get email updates when I add a new need to the site, please email me, comment here with your email address, or "become a member of the community" when you clink the link above.

I'm headed to med center for an MRI and likely won't get any of your responses till end of day. So if you can babysit tomorrow it might be best to call me.

Thanks!!