Thursday, January 28, 2010

Caught a Bug

I made the mistake of taking my temperature yesterday. But I learned that they take 'temperatures' very seriously over in the oncology department!

I was feeling the usual aches that come the days following treatment, but for whatever reason, they were different aches. That, combined with the fact that usually on Tuesday/Wednesday I'm feeling better, and I was feeling pretty crappy. So on a whim I took my temp. 100.5 Low-grade, but in chemo-world that's the red-flag number. I phoned the doctors office and told them the temp and asked if I should freak out or if there was something I needed to do. Given the fact, too that I didn't have the 'day after shot' of neulasta to boost the white blood count I think caused concern. I was instructed to go get my blood drawn to check the profile ASAP. Meanwhile I remembered I could take an ibuprofen and was feeling much better, thank you very much. So I went home, took a nap, and waited for them to tell me if I should 'freak out.'

Josh woke me up soon after and told me we were off the the ER. Lovely. You can imagine how excited we were for that! Long story short, I got a heavy-duty dose of antibiotics and sent home with two other antibiotics and strict instructions not to go near germs, to come in immediately if my temp "spiked," (to a whoppin' 101) and not to take an more ibuprofen/tylenol in case it was masking any infections.

So while I say I wish I never took my temp - that I shoulda just taken an ibuprofen, gotten a good shoulder rub and called it good - their response to my low temp was significant. Apparently when your WBC counts are low and you show signs of illness, it can get out of hand in a hurry. So I appreciate their precautions. I suppose I'm just not accustomed to so much fuss over a few stiff muscles and a headache.

Today I'm feeling significantly better, so I gotta believe I really was fighting something!

Met with the radiation oncologist, Dr. Kastner, today also. Looks like the plan is that after my last chemo on Feb. 11 I'll go downstairs for 'mapping.' I'm not quite sure what that means other than they'll add a few tatoos on me (sorry, no roses or "I love Mom" - just tiny dots) and begin the creation of the virtual me that they'll use to figure the tangents, etc for zapping the potentially cancerous lymph nodes and tissues. Yes, it'll be as fun as it sounds. Treatments won't actually start until mid-March, however, because we're finally taking the kids on the Disney trip we promised when Josh started seminary. Yea!

Here's how that went:
Dad's going to seminary: ok
We'll go to Disney when he's done: YEA
Dad has an extra internship this summer: boo
So we'll go at the end of summer: YEA
But Mom got cancer and needs surgery: boo
So we'll go in between treatments: YEA

Gotta love it!

Thursday, January 21, 2010

Chemo 7: Done!

Well, it's in the system anyway. We decided to do a little bit of steroids. She gave me the dose during chemo that I've gotten in the past, I'll take 2 mg twice on Friday & Saturday, then 2 mg once on Sun & Monday. I think. Anyway, they're working on the 'taper' because that's what apparently causes the emotional crash. The nurse practitioner said that for patients with lymphoma, they get 100 mg. for treatment (I don't know what I was given, but that sounds like a lot given that my 'taper meds' are only 4 mg.) and then they don't get ANY taper. THAT'll mess with your system! Again another humbling experience to hear that after I'm going round and round trying to get dosages so my hands don't hurt. Nice, Amanda.
......
Josh picked up My Utmost for His Highest (online link) by Oswalk Chambers (Amazon) again and so every so often I read it also. If you've never read any of it, I highly recommend it! Here's one that struck me as of late:


VISION AND DARKNESS
from myutmost.org

"An horror of great darkness fell upon him." Genesis 15:12

Whenever God gives a vision to a saint, He puts him, as it were, in the shadow of His hand, and the saint's duty is to be still and listen. There is a darkness which comes from excess of light, and then is the time to listen. Genesis 16 is an illustration of listening to good advice when it is dark instead of waiting for God to send the light. When God gives a vision and darkness follows, wait. God will make you in accordance with the vision He has given if you will wait His time. Never try and help God fulfil His word. Abraham went through thirteen years of silence, but in those years all self-sufficiency was destroyed; there was no possibility left of relying on common-sense ways. Those years of silence were a time of discipline, not of displeasure. Never pump up joy and confidence, but stay upon God (cf. Isaiah 50:10,11).

Have I any confidence in the flesh? Or have I got beyond all confidence in myself and in men and women of God; in books and prayers and ecstasies; and is my confidence placed now in God Himself, not in His blessings? "I am the Almighty God" - El-Shaddai, the Father-Mother God. The one thing for which we are all being disciplined is to know that God is real.


And so we wait in our "time of discipline." Josh & I were talking about our church planting plans 4 months ago and it felt so right and God-ordained. And now here we are in this 'desert.' What is God working out in our family? In me? In my kids and family? What will it take for me to know that God is real? What else will He teach me? Time to read Gen 16 to learn what's in there.
.....
My feet and lips are already tingly so I'm back on the couch sipping cool drinks with my feet propped on pillows. Noah's having a slumber birthday party - watching the movie 9. Not a bad gig for the moment! The comments these boys make - throughout the ENTIRE movie - are sometimes hilarious!

Tuesday, January 19, 2010

Eeeee!

Hear me screaming like a school girl?? That's because I found fuzz on my head!! Yea! It was confirmed by Josh that I wasn't seeing things or looking at a funny reflection in the mirror: I have fuzz on my head where before there was none. Aaaaaahhhhh! I have no idea why it's there because this taxotere drug seems to rip through my system, but if it's leaving my follicles in tact, I'm not complaining. Now.... how should I arrange the fuzz today? Hmmm. :)

All in all, the last couple of weeks have been pretty uneventful. I tried to do 'normal' last week and petered out by Friday. So...back on the couch playing Wii Boom Bloks again. Nothin' wrong with that.

We rented a small storage unit on Wolverine & Belding so we'll start boxing stuff up and bringing it over there in small loads since Josh goes right past there to work all the time. We're shooting to be out of the house by mid to late February with a few big moves to the storage unit and the Kenyons in between (did I mention we'll be at the Kenyon's? You know us, if there's a party to be had, we'll have it at the Kenyon's! How apropo that we'd move in for a while!). Don't worry, if we need help, we know how to find you - any of you - no one will be safe! Just kidding! Closing on the house will be on the 29th. The radon test, which came back high, was taken care of over the weekend.

So let's talk about radon - another good cancer topic. Radon's a odorless, tasteless, invisible gas released by decomposing matter in the ground. Usually it dissipates, but if it doesn't, levels over 4 are dangerous (sorry don't know the unit of measure for radon gas. Something per cubic something??). Radon gas is believed to be the second-most cause of lung cancer, so you can see why it's such a concern. We've always had levels of about 3something and felt 'when we could afford it' we'd take care of it (kinda like waiting to have kids until you can 'afford' them, huh? Not gonna happen). To get rid of the gas, a pipe & fan can be installed that runs from the basement out the roof somewhere which can be costly. What the new, soon-to-be owners of our house learned is that with our high-efficiency furnace we had put in a few years ago, it creates a vacuum trapping the gas in the basement/house. To fix this all that needed to be done was to drill a big hole in the basement foundation near the furnace and run a pipe up outside the house to the roofline. The hole releases the pressure creating a negative vacuum (I think) that draws everything to that pipe and therefore out to the outside. We'll do one or two more tests to see if it worked, but we're pretty confident. If not, we'll have to go with the more expensive solution instead.

So that's been our week. I'm dreading Thursday as it's another treatment. I'll call the nurse again today to ask about taking the steroids this time. It certainly cleared up the burning hand issue, but Josh really didn't like dealing with me on steroids. He figured I probably didn't realize how low I actually got. So like me: deny anything negative. So I'll ask about that. The other question for the nurse is about my sinuses/mouth. My tongue is the obvious problem, but I noticed that my sinuses seemed to get 'burned' and takes a long time to recover. Such tender tissue - will it survive?

But if my hair's surviving... I'm sure there's a drug for all the other stuff. :)

Friday, January 8, 2010

Out of the fog

After many days of not feeling like myself and feeling sorry for whatever 'self' I was, I'm glad to report the fog has lifted!

Note to self: steroids, bad!
And... I make a very bad druggy.

I was humbled today. I was reminded by a very good friend of my blessings and my short-comings. It reiterated what I was reading about 'suffering' (probably not a good topic when feeling sorry for one's self!) - that growth comes out of suffering.

I am not an empathetic person. But with each experience, each bit of suffering, I'm taught to be more empathetic. I can appreciate how one might feel when they see themselves as 'different'; I have a small taste of what it may be like to not be able to use your hands like you want to; I can say, "I know exactly what you mean!" when I hear that someone struggles with depression symptoms, or lives every day with medical concerns. At the same time, while I think that I can say, "ya, me too," I know that I can never fully walk in another's shoes, but I'm learning that I need to quit talking and start listening better.

I struggle, yes. But it's a struggle for a little while. My prayer is that my small bit of suffering may stay with me so that I may never forget the lessons I am learning as a result.

Tuesday, January 5, 2010

Treatment 6: Ahhh, baking soda!

I can't say that I'm enjoying this any more. I guess I never truely 'enjoyed' it, but tolerated it fine. I'm starting to lose interest.

Treatment 6. It's been said quite a bit lately, "At least it's only temporary!" Temporary cruds, temporary baldness, temporary eyelash loss, temporary swollen tongue, temporary burning hands. I find little comfort in such words, as true as they may be. Though I should qualify that there are thousands and millions of other people far worse off than I - suffering, starving, scared, lonely, grieving, hopeless, helpless. I've reminded myself many times the past few days that I must keep the end result (whatever God sees that to be) ahead of me rather than focusing on the immediate struggle. The 'whys' don't matter - I cannot begin to comprehend the 'whys' of things that happen in our world; it's 'to what end' that I need to remember. I'm writing it mostly to keep reminding myself more than to actually give new information.

I've spent more time on the couch and sleeping these past 5 days than I think I have since surgery. Is it the steroids that I'm taking to help with side-effects or is it the treatment itself? Would I be better off just dealing with the side-effects and skip the steroids? I cried at the Family Fare Pharmacy. That can't be normal. My tongue/mouth is no better off than last time, though I will say my eyelids didn't swell and I'm not sure if my hands are a little better this time, so maybe the steroids are good.

Emotionally I tell Josh not to look at me b/c I'll cry. The lady at Family Fare was telling me her breast cancer story and giving advice (which is why I cried), but it's still not a place you want to be when you fall apart. This afternoon I was crying because I always figured I'd be like my mother - always basically healthy. Then there's the struggle of 'wants': I so want to be that nurturing, warm, connected mother and wife, but at the same time I intensely want to hole away and become a hermit. ... I was telling Josh this morning that I cannot distinguish between sounds in the house: the lunch bags rustling in the kitchen are equally loud and 'important' to my brain as my dear Levi trying to tell me something 1 foot from my face. The dog walking across the floor commands as much of my mental attention as a question from Josh. I tried to make an appointment over the phone today and had to ask two or three times for the scheduler to repeat why she was calling and what she needed to schedule. Steroids or general treatment issues? We shall see.

On a funnier side, my appetite is quite interesting. Since I've got the tongue issues, keep in mind that everything I eat tastes pretty much like wax. And I do mean everything. Tonight I roasted some garlic and toasted bread with gouda cheese for a little flavor. Then I proceeded to eat the roasted garlic plain - right off my knife. Can't say I've done that before! Earlier it was a craving (at 1 a.m.) for a Whopper Jr, light mayo with all the fixings. And I've eaten so many fried egg & toasts (with more salt than usual) that I've run out of eggs - OK, so that makes a dozen, right? Ha! Anyway, it may not seem so weird, but given it all tastes like wax... I keep hoping something'll hit the spot!

I, Amanda VanTil, the non-planner, non-goal setting, non-party-throwing person wants to party with lots of food and laughter when this is all over. And then run on a warm beach. Anyone wanna join me? :)

Oh, and baking soda mouth swish is great for helping with a throbbing, nasty white tongue.