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Posts Tagged ‘radiation’

As I’m sure you’ve read from mom’s blog, she had another MRI to check to see if her brain tumors had returned, and it was all clear. I know this is a huge relief to her. She was worried about it because chemo can’t cross the blood-brain barrier, so chemo wouldn’t help, and because she already had full-brain radiation, it would be difficult to use radiation to treat anything.

At least that’s one worry to put to rest for a while!

She had a PET scan yesterday to see if the chemo treatments put her back into remission…hopefully we’ll hear more about that tomorrow or early next week.

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MRI, PET, CAT, EGFR…I thought I had to learn a lot of acronyms when I started working for the government, but this is getting out of hand!  🙂

Mom had an MRI to check the progress of her brain radiation therapy, and it showed that the tumors are still there, though smaller.  Before she underwent the therapy, I tried to do some research online, and I swear that I read somewhere that the radiation only begins the process of killing the tumors and that it takes time for them to fully die off.  Now that I’ve gone back to look again, all I can find is that radiation therapy is used to kill cancer cells and to shrink tumors.  So does this mean that the cancer is dead, but the tumors are going to stick around (assuming the Tarceva doesn’t get them)?  Maybe the nursing part of our family can explain.

Mom’s still sounding a lot better, though, which is good.  And Anthony and I (and the cats!) are heading down over Memorial Day weekend to hang out, so that should be fun.

One thing I’d like to say while I have the chance is that my dad has been awesome during all of this.  I was talking once with my classmate who lost her mom to cancer, and she asked me if my parents had a good relationship…”Yeah,” I said, “but my dad has been exceptionally nice lately.”  It was the same for her, she said, that her parents got a lot closer and it was really strange.  It is kind of strange.  But I think it’s amazing to see the love that my parents have for each other, even after all these years, and to watch my dad’s strength and patience rise to new levels.  I’m proud to be a daddy’s girl.  🙂

PS: I also found out this morning that mom’s cousin is in the hospital with a number of issues, but it’s mainly her heart.  So if you’ve got prayers to spare, send some her way.

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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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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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Radioactive Mother!

Today was my first full day home, and it has lived up to its name…very full.  Dad asked me to make sure I was up in time to help mom with breakfast since she was supposed to eat before 9 (and only meat and eggs, said the nurse).  After that, all she was supposed to get was water.  Today was PET-scan day.

Mom was well enough to make her own breakfast, which was great because the last time I touched a fillet was over 10 years ago.  She was actually very well for most of the day.  She had some shortness of breath, but I think that was the only major symptom (thanks to the nausea medication, of course).

Mom’s best friend took her out around noon to check out a wig shop.  Mom said she was glad I didn’t go.  You see, I’ve been bugging her about growing her hair out its natural color for years.  She always promised that she would grow it out once it was ALL gray, not just streaked, and I keep telling her that it will be impossible to tell if she never stops dying it!  🙂  Mom said she tried on a white wig and it looked really good…so she was glad I didn’t go, or else I’d have talked her into it.  Rats.

We left home about 1:30 to get to the hospital.  Mom had radiation, then a blood-thinner shot, and then her PET scan.  Dad met us there (he’d had his own appointment earlier and then had been running errands).  I got to meet the oncology coordinator, who was too bubbly for me but who seemed very nice, and to see where mom is spending most of her time.  The waiting rooms are quite nice, and they provide snacks and drinks, though I do have a very big problem with the food.  They offer graham crackers and saltines, one of which has high fructose corn syrup and both of which have hydrogenated oils.  Why in the world would you offer that crap to people who are trying to heal?!  I will be talking with said bubbly coordinator the next time I see her.

It was funny…dad reached for the graham crackers, and I read the ingredients, and then he put them back and grabbed the saltines.  I read those ingredients, and then he just gave up.  So I offered him some of my almonds and one of my soy “cheese” sticks (which isn’t a whole food, mind you, but at least it’s moderately GOOD crap that’s in them!).  “You brought those for a reason, though,” he said, not wanting to take my snacks.  But it was nice to share.  I did buy him some snacky food at the store yesterday, so now I just have to encourage him to take them along.

Mom did not at all enjoy her PET scan.  Well, the scan was okay, but not being able to eat or have a cough drop, and then having to drink this medicine they mixed with a raspberry Crystal Light (smelled fine to me, but she hated it)…that got to her.  They put her in a special waiting room because they didn’t want to “expose the general population”…she was radioactive!  I got to sit with her, though, so maybe I get superpowers too.

She had an appetite after the scan and wanted some yummy fried food, so we hit up the local seafood shack.  She ate a ton, which was awesome.  I got a small plate and ended up helping her.  It was way too much for me, though, especially after not having eaten out for over a month.  Everything was loaded with salt and sugar.  I’ll have a food hangover in the morning!

So, all in all, a pretty good day.  Plan right now is to go back to WV on Sunday, then stay a week, and come back the week after.  Mom said she’s supposed to be feeling her worst right about then.  Hopefully I can be of help.

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Blame it on the Radon

I wanted to start by saying Thank You to everyone who has expressed care, concern, support…it means a lot to know that folks are thinking about and praying for my mom, and for me and my dad.  Some of you reading this have gone through similar situations, and while it doesn’t make it any easier, it’s nice to know that you’re there.

I arrived home today to an empty house.  After I scared the pee out of the dog (she’s apparently only aggressive when mom and dad are home; she ran away from me, cowered in a corner, and then wet the carpet before trying to bite my hand!), I called to find out where my parents were.  Dad said their 15-minute appointment had turned into 4 hours.  Turns out they found a number of blood clots in mom’s right lung, and that’s certainly not helping her to breathe any.

Mom said they wanted to hospitalize her for the night, but she talked them into letting her leave, though she still has to have a bunch of blood-thinner shots.  No one has talked about the seriousness of blood clots, but I have seen enough birth-control-pill warnings to know that a blood clot that forms elsewhere can become loose and travel to the brain, and then it’s pretty much Game Over.  I hope these folks at Duke know what they’re doing.

So I traveled through the cloud of spring pollen that is hovering over this city to put myself to work.  My first task was to try to find out what was really going on.  There’s a thin layer of optimism floating about in the air, and while I fully understand while it’s there, I know there’s something hiding beneath.  I need to hear some kind of truth and not just the positive visualization that will help mom through this (though, again, I understand why it is there).  I began by reading the stack of material in the Duke Hospital folders piled on top of mom’s desk, and that gave me a better understanding of what they’ve been told about the disease and the treatments.  And of the side effects of all the treatment options.  I found it interesting that there was a section in a booklet about how to tell your children about the diagnosis; it said that you should be as straightforward as possible…please.

I talked to dad for a while and then asked what I could do, and he sent me off to the grocery store, mostly to get graham crackers for his nauseated patient.  I spent a bit too much money in getting food for all of us for the week, but I wanted to grab some things I could show dad how to make so he’d be able to make some batch food just to have for himself for a while.  It’s a lot easier to eat well when you can just grab and go.  (It’s the only way I survive!)

Mom was beat when she got home from her appointments.  The radiation knocks her out, especially with nausea.  They gave her some nausea meds, and she took more of that and then took a nap.  She woke up when I was unpacking groceries, and it was awesome to see her back at close to 100%.  Between the nausea meds and the blood thinner, she went from not being able to talk without becoming short of breath to not being able to shut up!  The color was back in her face, she wasn’t coughing, and she looked 10 years younger.  It was amazing.  She said she was hoping tomorrow was a new day.

My talks with dad have been interesting.  I’m impressed with the way he is able to talk about the situation from a removed position when I ask questions, but then he says little things that just break my heart.  After we’d had a couple of glasses of wine, I asked him if anyone had said “6 months” or “2 years” or anything like that.  He said that no one would say anything like that because they just didn’t know, but based on what he’d read, he’d be very happy to have 2 years.  The Duke booklets said something about how the lung-cancer survival statistics were horrible, but how folks shouldn’t dwell on them because every person is unique and because the treatments are continually evolving.  Not that comforting.

Dad’s biggest problem, I think, is not being able to pinpoint the cause of the disease.  Mom said the doctors already dispelled this idea, but dad thinks it might be related to the radon present in our first house.  I hate that it seems like he is just trying to blame this on himself, like if he had just protected us from radon and second-hand smoke, we’d all live forever.  Or if he had just thought to have mom go through a CAT scan two years ago, maybe we could have caught this earlier.  But that’s just my dad…I think if I went outside and tripped and broke my ankle, he’d blame himself for not sanding the driveway or for not moving the branch that tripped me out of the way.  It just happens, though.  We all have to trip sometime.

The friend who recommended I start this blog also recommended that I have two hearts: “one made of wood.  this way you can be the strength your family needs.  i suspect you’ll be the find a need to fill this position.  have a 2nd mushy / squishy heart that you share with someone privately.  its important to have both.”  I like that he said “wood” and not iron or stone.  Wood is still alive, still malleable, still able to be touched.  But hard enough to withstand the wind and the rain and the snow.

And that’s important, because the storm has arrived, and I think it caught us all off guard.

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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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