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Posts Tagged ‘EGFR’

Mothers’ Day

I’m assuming that most of you are also reading mom’s blog, but just in case you aren’t, I’m happy to report that her biopsy came back with the result that she’s a mutant (and dad and I promptly told her that we already knew that!), testing positive for the EGFR gene.  But we had pretty much already guessed that because she’s gotten the Tarceva rash.  Her energy isn’t back at 100%, but she’s been able to go on short walks, doesn’t cough nearly as much (dad said she doesn’t start until about 4 a.m.), and sounds just like her old self.

So, from here on out, it’s just a prayer that the Tarceva does what it’s supposed to do.  I’m by no means a medical expert, but from what I understand, the drug is supposed to block the receptors that allow for tumor growth, so it’s supposed to get rid of what’s there and keep new stuff from forming.

Mothers’ Day is almost upon us, and mom mentioned that folks had asked if I’d be back.  I’m going to stay up here this weekend, but I’m trying to see if we can take a long weekend over Memorial Day to go down.  Anthony’s also going to see if he can get some time off, which means a looooong car ride for a pair of adorable kitties!  I gave mom some money to cover a facial that she wants, and I also had a box of “frogs” (they’re homemade turtles) from the Chocolate Fetish in Asheville delivered.  They arrived this morning.  At least they’re made from whole ingredients without all the added crap!  😀  (If you’re ever in the market for chocolate, I highly recommend them…especially the Velvet Sin truffle, which is my absolute favorite!!  I think I could eat nothing but those things for the rest of my life and be a very happy gal!)

So I’m sending love to all the mothers out there, both experienced and brand new, and hoping that all of you have not only one wonderful day, but a lifetime of wonder.  Thank you for your continued prayers and support, and let’s hope that there won’t be much more to report on my mom other than her continued improvement!

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Well, it’s a cloudy, drizzly day here, but I think today was a good day for mom.

We found out more details regarding the problem with the biopsy results.  This particular test they needed for this particular EGFR stuff is pretty new, so when they sent the tissue off for the biopsy, the testing place automatically ran the older, more common test, which wasn’t what the Duke docs needed.  The Duke docs got those results a week later and had to send them back to the testing place and tell them to run the test they needed in the first place.  So this test place that holds the patent just started the test on Monday, and they are now saying it takes 12-15 days to get those results.

However, the Duke doc said that he was going to go ahead and put mom on the Tarceva pill, which would mean he thinks there’s a good chance she “is a mutant,” as he said.  Tarceva is something she will have to stay on for the rest of her life, assuming she does test positive for the mutant gene.  If she does NOT test positive, they will just take her off the pill and start the fun chemo process.

Tarceva is not chemotherapy, they say…it’s “biothearpy.”  Or something like that.  The only main side effect that the majority of the people complain about is a nasty rash that resembles a bad teenage breakout of acne on the face, chest, and back.  It’s supposed to go away after 6 weeks and some moisturizer.  But it doesn’t sound like fun.

The interesting thing is that we’re almost hoping she DOES get the rash because that means that the drug is working and it’s the right treatment.  If she does NOT get the rash, that does NOT mean that the drug isn’t working…but if she DOES get the rash, they’ll be almost certain that it is.  I hope that makes sense to everyone.  It’s confusing to write.

This drug is no joke, though.  Check this out:

It’s perfectly safe for her to ingest the pill…but she should wash her hands after handling it.  And should any bodily fluid come in contact with her clothes or anything else, she should clean it up while wearing gloves and wash the affected material separately from other clothes.  Oh, and she should also place the empty pill bottles and/or pill blister packs in the provided Zip-Loc bag and return it to the hospital for disposal…since it’s a biohazard.

Right.

So after we talked with the doc, mom and dad got a bite to eat, and then we stopped by the new Trader Joe’s.  (I’m not a big fan of that store, for the record…they just buy crap in bulk and repackage it with their own name…the produce isn’t even organic.)  But we got some eggs and bananas and some other stuff and went to check out.  The lady at the cash register told mom that she’d won a spin on the “Tiki Wheel” because our total was $34.76, and every total with 4, 7, and 6 in it won a prize.  Based on everyone’s reaction, this almost never happens.  Mom took the receipt over to the manager guy, and they turned on this rotating light and started singing the “ooga-booga” stuff and had her spin this wheel, and she got the best prize: their most expensive reusable bag.  If she takes it back in there to shop, they’ll get her info and enter her in a $25 raffle.

And I brought them the Chambord cheesecake from Almost Heaven (aka Olivero’s) in Bridgeport, WV, so I think it’s a good day for mom.  🙂

Mom took me back with her for her last radiation treatment on her brain.  I got to see the room and the machine and the creepy mask they made of her face so she’s immobile during the treatment.  The techs are very nice and explained what everything was and how it worked.  I didn’t know that they shot the beam at only one side of her head so it goes all the way through, and they set different percentages of strength or something like that so different areas of the brain are targeted.  The lady tech liked my sparkly purple toenail polish, so she’s cool with me.

All said, mom is very upbeat and positive, happy to be doing something about this cancer, and I know that attitude and outlook is sometimes more important than the treatment itself.

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Home Again, Home Again

I made it back home to WV this afternoon.  I’m feeling okay, though tired.  Mom was all right when I left her, but she was exhausted from overexerting herself at the Jockey party.  I hope that she will take a break for a while now, though I know she doesn’t want to let her business drop.  Hopefully her team members will help her out.

One of my uncles was supposed to visit my parents at the beach, but he had some car trouble, so it wasn’t the relaxing visit that everyone was expecting.  He was supposed to arrive shortly after I left (around one on Saturday afternoon) and then leave that evening, but I think he stayed the night.

So there shouldn’t be too much more to say until we get the test results back from mom’s biopsy, which should be on Wednesday.  We’re hoping that it’s the EGFR type of cancer so she can take the pill form of treatment and stay away from the chemo.  Waiting is almost harder than knowing, though.

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Yesterday was busy.  I could tell mom was feeling much better because she wanted to run a lot of errands!  I didn’t mind too much, but I do have to watch my patience sometimes.  I’ve been trying to put myself in her shoes, and it would make me crazy not to be able to drive myself around.  Mom’s always been strong and independent, and I know it bothers her a lot to have to depend on others to cart her around.  So she can boss all she wants!  🙂

I also had to help her with a Jockey party in the evening.  Not something I would elect to do on my own.  I was happy to help her carry her sample clothing and such, but I wasn’t told until the last minute that I had to wear some of them myself!  I think the clothes are great and all, but most of them aren’t for me.  I’m a jeans and t-shirt person, or else a fancy dress and heels person, and most of the Jockey clothes she sells are in between.  (But if YOU are interested in such clothes, please check out her stuff at http://www.myjockeyp2p.com/sites/salliematlack!)  It was interesting to watch her work, but it drained her of all her energy.  I suggested that she take it easy for a while, or at the very least make sure that she has someone with her who can help if something happens, if she gets too short of breath, etc.  Hopefully she’ll take a little break and let her Jockey team help her out.

My parents have their week at the beach this week, and mom wanted to come for the weekend, but they weren’t going to come down until Saturday because they wanted to spend as much time with me as possible.  I decided to come on down with them so she could have a full weekend.  So after her radiation this morning, we drove down to their place at Emerald Isle.  I’ll be going back tomorrow afternoon to Wake Forest, then back to West Virginia on Sunday to get ready for work and class on Monday.  *Tired.*

Mom felt well today.  But she got a call that wasn’t so great.  The results of her PET scan came back, and they found a spot on her liver and a couple in her bones.  She said the oncologist wasn’t generally an overly positive person, so the fact that he sounded hopeful was good.  He told her that non-smoker lung cancer spread more quickly than smoker cancer, but the flip-side of that was that the non-smoker cancer reacted better to treatment, and they were usually able to extend life longer.  “It’s not expected,” mom said, “but it’s just one more thing we need to deal with.”  I said it could have been better news, but it also could have been a lot worse.

We’re waiting now on the results of her biopsy.  If it’s the EGFR stuff, she’ll take the pill.  If not, it’s chemo.  She’s praying for the EGFR.  But…if it is a genetic problem…while it will make treatment more palatable to her, it will be more worrisome to me for obvious reasons.

Mom wanted a treat for herself for lunch, so she got a double cheeseburger at Wendy’s.  Not such a good choice, but I could have told her that.  😉  It REALLY did not sit well with her stomach.  I talked with her a bit about the importance of good nutrition.  I know that mom isn’t going to become macrobiotic or anything, but moving to a diet of whole foods, free of additives and preservatives and refined crap, will only benefit her body and help it heal, help it get through chemo and all of her treatments.  I hope she will take that advice seriously.

We stopped by Fran’s (a clothing store) on our way to the house because I really needed a new bathing suit.  She helped me pick one out, and then we went a little overboard.  She found a suit and cover-up that look amazing.  Then she found a cute pair of shoes that would have looked great with my suit and wrap, but they hurt my feet a bit, so she tried them on and ended up getting them for herself.  She spotted an amazing pair of purple shoes for me, and she grabbed a pair of cheaper sandals for my suit.   I’m not going to complain!

We went out to dinner (which was not very good at all), and mom made it through, though she was exhausted by the end.

I’m really proud of dad and how well he’s taking care of mom.  I don’t think I’ve ever seen him be so nice to her.  I know she appreciates it.

As for me, I’m exhausted.  I did not have enough time this week to give to work, and I was just barely able to finish my school assignments.  I need to write a 12-page research paper and revise a creative non-fiction essay next weekend so they’re done and I can focus on my mom again the week after.  I’m lucky I have such understanding co-workers and professors.  And I’m very glad I’ve been able to spend this time with my parents.  This might be the last good week mom has for a long time, though I’m hoping that’s not the case.

I hope the sounds of the ocean put her soul at ease and allow her to begin the healing process.

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One of my closest friends recommended that I start a blog to update everyone on the status of my mother.  He told me it would be easier than having to repeat myself over and over, although I am finding that the repetition makes the news less emotional and more clinical, providing something of a benefit for me.  I finally just decided that others out there in the large void that is the Internet who are dealing with some of the same issues might benefit from knowing that they’re not alone.

I feel alone.

My mother has had a cough for what seems like forever.  It’s been at least two years.  It got to the point where every time she tried to speak, she’d cough.  They thought it was asthma.  Then it was gastric reflux.  Then she woke up one night and couldn’t breathe for a full minute, and then it was vocal cord disorder.  I got the news just last week, Friday, March 26th: lung cancer.

Mom is young (I’m just turning 30 this year).  She has never smoked.  She exercises every day, and she does her best to eat well and take care of herself.  This is not something we expected.

I’m having a hard time keeping track of what is going on, mainly because I’m so far away.  I live a good seven hours from my parents, not exactly just down the road.  I have been calling every day, sometimes three times a day for updates, but it’s hard to listen and not just hear.  I also get two different stories sometimes, one from mom and the other from dad.  I’m beginning to think they are having the same problem.  We have trouble absorbing things we don’t want to hear.

I do know that there are multiple tumors in her lungs.  I also know that there are also small tumors in her brain, and she started radiation treatment for that today.  I know she just had a biopsy, and we’re expecting the results back sometime next week: will it be a type of cancer caused by some kind of mutant gene, requiring her to be on a pill for the rest of her life (~70% chance); or will it be some other kind, requiring full chemotherapy (~30% chance)?  There’s no real history of cancer in her family, but we’re all hoping that she has that mutant gene–something we never thought we’d wish for.

What is the outlook?  No one will tell me; maybe no one knows.  Mom was upbeat for the first few days, but it wasn’t an “I’m going to be fine” kind of optimism: it was more of an “I’m in God’s hands” kind of thing.  Today was the first day I heard a crack in her voice.  Dad admits that they’re both feeling a bit low, and he did tell me last night that it’s incurable.

And it’s true, what I’ve heard: cancer takes over your life.  Not just the life of the patient, but the whole family.  All conversations now revolve around cancer, like it has become the sibling I never had.  Dad said so many people are calling that they sometimes don’t pick up the phone.  It’s overwhelming.  Everyone wants to feel better by offering to help, but they are unknowingly and unintentionally placing an extra burden on my mother, forcing her to say no, no, everything is okay, we’re just fine, I’ll make it through, I’m in God’s hands.  She must tire of those conversations.  But I know she welcomes the prayers and support and love.

I feel vulnerable, and I want more than anything to be there for my parents.  I have a full-time job here, but my co-workers are amazing, wonderful people who understand that family comes first, and they are more than willing to do anything and everything they can to support me, including letting me work remotely for as long as necessary.  But I am also a graduate student, and there are four classes left in the semester–as well as one large research paper.  I was not the most consistent undergraduate student, and it means a lot to me to be able to pursue this degree.  I know my mother would not want me to give that up.  But I also don’t want to squander whatever time we might have left together.

What’s interesting to me is that, in growing a bit older, I have just in the past year come to fully understand that my parents will not always be around.  It breaks my heart to think about it, but it’s something we must all comes to terms with eventually.  I keep trying to spend more time with them, to say what’s on my heart and to ask as many questions as possible, but when we are actually together, I have trouble figuring out what to say.  I think that is because I know my parents love me, and they know that I love them, and there’s just nothing left to be said.

My office had its grand opening last Thursday, and I have a lot of things due for my classes on Monday evening, so I have not yet been able to make it home.  I will leave early Tuesday morning, staying through the weekend.  I have a doctor’s appointment myself the Monday after, then class, and then we must really figure things out.  One week here, one week there?  Back and forth every week?  I have already decided that if she has to go through full chemo, I will move back for as long as I’m welcome.  I hope it doesn’t come to that.  I hope her faith, everyone’s prayers, and my love can make a difference.

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