Sunday, July 31, 2011

It's test week. To start it out, here's a question. What's 17,816? Any ideas? Give up yet?

The cost of one round of ICE chemo. Yikes! Thanks to health insurance, that's not even close to our portion though. Whew! It's easy to see how medical expenses can bankrupt families.

I've got another PET/CT scan on Tuesday (about $13,000) to see if the cancer is in remission or close to remission so we can proceed with the transplant. Then, Thursday is a whole bunch of preliminary tests for transplant: blood work, chest x-ray, pulmonary function tests, EKG, echocardiogram. Just your typical let's-spend-two-hours-in-the-hospital-being-poked-and-prodded-because-we're-bored plan :-)

Maybe I did a silly thing by wanting to document how generous our neighbors, friends, and family are. We keep writing things in red ink on our family calendar, but it's getting hard to read birthday and other celebrations on each day. I'm so touched. It's a great reminder that I'm not alone even if this particular trial is rather unique.

We had a wonderful dinner on Tuesday night, complete with homemade cookies for dessert, thanks to Kim and Kristin. On Wednesday, a hilarious fluffy purple unicorn from Diane with an equally giggle-producing card and a different card signed by lots of coworkers. On Thursday, lots of yummy ham and bean soup from Jen. Today, fruity slush from Jennifer. Wow!

The more we get away from chemo, the better I feel. Almost back to normal now. Just slightly more tired than usual, but it keeps getting better all the time. Now it's time for the weird sensation of feeling each heart beat in the center of my hip bones and spine. It's almost like a tiny zap of electricity. If I think about it, there's some pain associated with each beat; but I'm almost used to it by now so I usually don't think about it. Just another sign of modern advances, where the Neulasta injection is stimulating my bone marrow to produce more blood cells. I'm not sure if it applies to red blood cells and platelets as well as white blood cells. I'll have to check.

There's one part of a suture from my port that is now sticking almost straight out and likes to poke me--especially when I'm trying to sleep. Hopefully, I can have a radiologist or radiology nurse look at it Tuesday morning. I don't just want to tug on it. If it moves my port or somehow disrupts it, I'd hate to need to get it reinserted.

Very little to complain about and lots to be grateful for. Thanks for the heartfelt reminders to look for blessings while enduring trials, Nanette and Jared. And thank you for the very real, yet upbeat examples!

Sunday, July 24, 2011

The good news for the day is that I did not plaster the organ with the contents of my stomach! Thank you, Amy! How's that for the goal of the day? Note to self: take the anti-nausea prescription for one more day than originally suggested.

I came up with a fun new game for Dale today. Go ahead. You can play also. Try to guess what food sounds good to eat that I might be able to keep down. I'll even spot you three guesses.

Fried dill pickles? How would you ever guess that? And why would you ever guess that? When I'm feeling like myself, fried pickles don't make it on the favorites list. Here's the game clincher though. . .

Even if you managed to guess the food, if you went to get it for me, by the time you got home with it, it would sound totally disgusting and trigger my gag reflex. Good thing it's Sunday so we didn't have to waste time, energy, or money on that one.

Is this my body's retribution for never going through pregnancy cravings? I think we need to invent a new way to pass time.

We did have a lovely visit with Jen and Klint. It's amazing how similar and yet differently our bodies react to seemingly opposite physical stresses and pain.

Saturday, July 23, 2011

Finally, life returns! After sleeping for about 21 of each of the past 24-hour periods, I have a glimpse of what it feels like to be alive today. I know the past week's worth of haze is not living and is not me. I'm just grateful that a semblance of me finally returned today.

I'll bet Dale is too. I can only imagine what things must feel like and look like from his side of all of this. I'm sure that a mostly comatose wife wasn't exactly what he thought he was getting into.

I'm learning what foods usually pass the stomach test. I have to remember this strange list. I have a feeling I'll need it even more after I'm admitted for the transplant: potatoes with onions, fruit juices or popsicles, spaghetti sauce, and white bread without any extra seeds or large grains in it. And you can live of from about three bites of any of those foods for at least 3-4 days.

More lifesavers or reminders that life continues: a freezer meal from Goddards, a gorgeous purple card from Jeri, and homemade white bread from Tina. My brain is so confused lately, about an hour after the bread was delivered, I called Dale to ask him to bring home a loaf of white bread. It's the only thing that sounded promising to try and keep down. Fortunately, we already had some and I didn't even have to wait for him to get home before I could try a small piece.

Tuesday, July 19, 2011

Another set of chemo days.

It started yesterday with Etoposide--about 1.5 hours worth dripping through my port. I don't exactly know what that stuff is, but it wipes me out. About an hour after we got home, I crashed--hard! Took a six-hour nap, from about 2:30-8:30 p.m. It's been three weeks since the last treatment. Almost enough to forgot that weird, metallic taste in my mouth and my stomach constantly flip flopping and threatening to explode. Very strange to feel that you're body is battling against you.

Today is the long day. Start with the anti-nausea, Aloxi. More Etoposide. Then Carboplatin. About a three and half-hour process from 11-2:30. And my favorite part? A 24-hour pump loaded with Ifosamide and Mensa to take home. I can't get away from this stuff!

Tomorrow is a fairly quick day. More Aloxi, more Etoposide, a liter of saline to help wash everything though, and another stinging Neulasta injection to stimulate my marrow to produce more blood cells and counteract the chemo. Should take about one and half to two hours total.

Breathtaking sunset today with lots of purple in it. Can you imagine what it will be like when Christ comes again? I don't know how soon it will happen after He comes--maybe instantly?--but no disease, no cancer, no diabetes, no Alzheimers or illnesses of any kind? That would be so cool to be healed. One day chemo and cancer, and the next day cured! Personally, I don't think I'll be on the earth when it happens; I think the world isn't wicked enough yet--YIKES! But it is a great thing to think about.