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Posts Tagged ‘Tarceva’

I started seeing a counselor. I’ve never seen one before. I just thought it might be good to get guidance from someone who might be able to help me figure out my way through this grief. I’ve never had anyone close to me die before. All of my grandparents have died, and I did mourn for them, but this is entirely different.

My company offers six free office visits per crisis. Very nice of them. They hooked me up with someone in their system. I was worried I wouldn’t get along with this person, but somehow I ended up with a great match. The doctor’s name is Jennifer. She got her undergrad at App State, she’s young (about my age, I think), and we seem to have compatible personalities. She reminds me a bit of my friend Libby from the Peace Corps, who was my unofficial psychologist during my tenure in Lesotho. I like her.

The best thing so far is that she’s told me all my symptoms (emotional eating, lack of focus, depression, etc.) are normal and that they’ll pass. When I mentioned that I felt like I hadn’t had time to grieve due to all of the immediate funeral preparations, she said that it’s typical for grief to be delayed a bit, so I should be expecting it to hit right about now anyway. She suggested that I make time to grieve. It’s an interesting concept. She also suggested that I keep a journal. I told her I had a blog. I’m sure she meant an actual journal, but I got burnt out on handwriting journal entries in the Peace Corps. I’m afraid this will have to do for now.

She asked how I was sleeping, and I said I got to sleep fine, but I woke up around 3 or so to use the bathroom, then just couldn’t get back to sleep for an hour or two. I also said my nights were punctuated with a number of strange dreams, most involving mom or something related to what’s going on. And they’re weird: I usually dream familiar settings, places I’ve been before, but most of these dreams are in strange locations. I never really remember them. I did remember my dream this morning, maybe because I’d been wondering why I can’t remember any. “We” (and by “we,” I don’t really know whom, just me and my crew, maybe family, I don’t know) were in this house that we had to dismantle. It was two stories, and we had to rip it apart by hand. We were able to punch holes in the floors by jumping very hard, and then they kind of wobbled and disconnected…hard to explain. At some point, people I didn’t know came in to portion out mom’s things. That wasn’t cool. The meaning of this dream seems rather obvious. It’s a common theme these nights.

So I got a little under six hours of sleep last night (with that dream and all), and then I had to get up to run the Free to Breathe 5k at North Hills. I contemplated not going…I was tired, it was cold, etc. But I went.

I wasn’t expecting it to be so hard. But it was HARD. I walked up and saw all these memorials and all of these “I’m running in memory of” signs and I just lost it. Duke Raleigh was one of the sponsors, and they had this big table. I went over and asked if any of the doctors were around. They said there was a Dr. White there, someone I’d never heard of. Then I asked if Brenda was around…she’s what they call a “patient navigator.” We got interrupted by a very frustrating moment of silence before the lady pointed me to Brenda.

Brenda is the most empathetic person I have ever met. She is the definition of kind and caring. I don’t know how she does it. Mom adored her. Brenda can make everything better by just walking into a room: somehow you know everything’s going to be okay because she’s there. The first time I met Brenda was at one of mom’s radiation treatments. Brenda explained the Tarceva to mom while we were in the waiting room, then she sat with me for a while during mom’s treatment and answered all of my questions. I shared my delicious almond-flour chocolate chip cookies with Brenda at mom’s first chemo treatment. I think the last time I saw Brenda was mom’s last trip to the hospital. I remember that we were feeling lost and confused, and then she came. And wow, how mom smiled.

Brenda recognized me immediately, even though I was all bundled up. I starting crying as soon as she looked at me. She gave me a hug and didn’t let me go for a long time. When she pulled back, she was crying too. She told me that I had nothing to regret and that I was there every step of the way for my mom. She asked when the service had been and then told me she couldn’t believe that I was there at that race. I told her it was hard, but I’d run it off. She asked about dad, then told me we could come talk with her at any time.

I’m so glad she was there.

The race was nice, actually. I wasn’t expecting much. I was wearing an extra 5 lbs of clothes, hadn’t rested well at all, had exercised the night before…basically, I didn’t think I’d even make it running the whole way. But it was sunny and I got kinda overheated at one point. It was a very hilly course, but not one single car passed us, which was heavenly. And not only did I run the whole way, but it was my fastest race time ever: 27:53.

After the race, I came home and changed, then went to a two-hour “restorative yoga” session, which was basically just resting in different bodily configurations. That was relaxing. Then it was a rush to get back home to make the first meeting of our non-profit…we had to officially elect board members and officers and such before we could file for 501(c)3 status. So that’s done. And then it was off to dad’s house to cook dinner. I wrote a bunch of thank-you notes, had a lovely dinner with dad, picked up the little heart that has a bit of mom’s ashes inside, and then came home to feed the kitties. Long day.

I have to spend tomorrow (and probably Monday) revising my thesis in the hopes that we can keep the 11/11 defense date. Busy busy. Who’s got time for grief?

 

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Grits

Dad had a doctor’s appointment today, so he asked me to work from their house again today. I’m very grateful that I have an understanding boss and a flexible job.

Mom ate a TON today! Okay, maybe not a ton, but compared to the amount she has been eating, she pigged out. I had a thought while I was killing myself on the treadmill this morning that mom might like some orange juice…I mean, maybe the lady is just sick of water. I was dehydrated at that moment and all I wanted was some orange juice, so I figured it couldn’t hurt to ask. Sure enough, mom had an entire cup! I went to refill it, but by that time, she didn’t want it anymore.

I asked mom if she wanted food, and she actually nodded, so I got very excited and decided to make her some grits. I tried to give her some instant oatmeal in the meantime since the grits took 30 minutes, but she didn’t like the oatmeal at all. She did, however, eat at least a half a cup of the grits (mixed with butter and sugar, of course!). And I even got her to eat some barbecue for lunch (not sure what it was, exactly, but it smelled good and was in the fridge, so whatever). And she had at least three big glasses of water, so that’s great too!

Things didn’t go so well after lunch. Maybe it was the pork. 😛

I posted this as my Facebook status today: “Something I’ve noticed at my parents’ house: everything always happens at once. For me, it will be the CNA needing help while I’m on a conference call, or the phone ringing right when I get pinged on IRC, or perhaps all of those all at once, plus a flower delivery. Then three hours of dead time. Then four more things all at once. It’s interesting how it all works. I’ve noticed it happens with my dad, too.” And it’s the truth. Today was no exception.

I went in to check on mom, and she looked horrible. Her face was all red, she was kind of shaking, and she was very hot. I searched high and low for a thermometer, but I couldn’t find one anywhere. I was about to call the hospice nurse when there was a knock on the door, and one of my parents’ friends showed up. She visited for a bit while I got a cold washcloth for mom and tried to get the hospice nurse on the phone. I like the hospice nurse, but whoever they’ve got on the phones and/or scheduling isn’t that great. I had to wait for a menu, then hit 0 to get the operator, then ask for hospice, then got a voicemail message for the hospice scheduler that said that if it was an emergency, I should call back and ask for the supervisor. *sigh* So I called back and the operator took my name and number for the nurse to call back. But apparently the nurse didn’t get my number because she called the house phone, which gets forwarded to my dad’s cell phone, and I was trying very hard not to worry him. Anyway, the nurse finally called my cell and told me to give mom some Tylenol. Helpful.

Mom’s 180-degrees different than she was this morning. She was lucid and talkative and hungry this morning, and now I can hardly rouse her. One of the pills they stopped was her Synthroid, so dad and I just gave her one of those. I tell you what, if my thyroid level is even a teeny bit low, I can’t get out of bed…I can’t imagine what would happen if I stopped it entirely. I’m cool with stopping the Tarceva because that has more benefits than downsides, but I am NOT cool with stopping the Synthroid. Ugh. I didn’t even think about that yesterday. She’s only missed it by several hours, so it shouldn’t be too big of a deal. Good thing dad mentioned it!

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Black Blood

I’m afraid I wasn’t much help to dad today at all. The hospital bed got delivered when I was on a conference call, so I couldn’t help with that, and then I was away getting a physical when the CNA was here to move mom onto the bed, so I couldn’t help with that, either. I feel ridiculously guilty. But I did warn dad last week that Monday would be better if he wanted my help with this.

So mom is settled into her new twin-sized bed, which they put at the foot of their king-sized bed. I think it will be better. It will make it a lot easier for those of us who care for her, and it will help her to sit up a bit more, which might make her more inclined to eat (pun intended!). I don’t know, though. She’s not doing so well. Her catheter bag was full of black liquid this morning. Dad said he thinks her kidneys are failing. The hospice nurse said it was either her bladder or kidneys. I asked the nurse if that hurt mom, and she said no.

Mom has no energy, no muscles, no desire to eat…her desire to drink is waning, too. The hospice nurse said that mom will soon go into a coma-like state where she just doesn’t have enough energy to wake up. She said that they don’t really know what happens internally in terms of the dying withdrawing and tying up loose ends in their own minds. She said sometimes people will be able to react when you speak to them, like opening an eye or making a movement that acknowledges that they heard you, but sometimes they can’t. She did add that people can always still hear…that hearing is the last sense to go.

They made the decision to stop all of her medication today except for her beta-blocker (they’ll stop that too, pending approval from the hospice doctor) and half of her Zoloft. I’ve been wondering when they were going to stop the Tarceva. It can’t be doing much but aggravating her stomach. It’s a hard decision, though, I know. Especially psychologically. We’re not going to give mom the medication that’s helping to stop the cancer growth. Not an easy choice. I think it’s for the best, though. I mentioned to the nurse that I was curious to see when they’d stop the Tarceva, and she said that she’d brought it up before, but dad hadn’t been ready until now. I guess he’s finally starting to come to grips with this.

Before I left, he said that this is sad. I said of course, but we don’t want her to hang around like this forever…it’s just not good. He didn’t want to talk much after that. Can’t say I blame him.

But the good news is that mom still knows who I am. She still hugs me back, and she still says, “I love you, too.” That’s about all I have left of her now, but I can’t tell you how much I’ll miss that when it’s gone.

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I went over to my parents’ house yesterday to make dinner. Dad was out working all day, and a few of mom’s friends had volunteered to hang out with her so she wouldn’t be alone. She takes her Tarceva at 4, though, and since it’s extremely important that it on time and is highly toxic (we’re not supposed to touch it), he thought it might be a good idea for me to come over a little early.

One of mom’s friends told me that she was confused because my mom had told her that it wasn’t me, but Alison from mom’s Jockey business who was coming over to make dinner, which didn’t make any sense. I asked if dad or mom had told her that, and she said mom. I told her not to believe everything that comes out of mom’s mouth. 😉 Turns out that dad had told mom that “some person named Allison” was coming over at 4 to make dinner. He meant it as a joke, but I guess mom thought he wasn’t talking about me. Go figure.

I was planning on offering to paint mom’s nails, but her friends had beat me to it! She has such wonderful, loving friends.

And mom was GREAT when I showed up! She was walking okay (I helped her to the bathroom since she said she hadn’t gone all day) and talking without any issues. There was no delay between my questions and her answers. I haven’t seen her that alert in weeks. Then she said she wanted to go to sleep since her friends had kept her up all day, so I let her. When she woke up again for dinner, she was her old confused self again. It made me wonder if we shouldn’t be keeping her up and mentally engaged all day instead of sleeping. Maybe that would prevent her from being so groggy and confused.

While mom was resting and dad was still out, I looked through old picture books. I was struck by how much my parents loved me. Each one of the albums was like a flipbook on loving Allison. They’ve had a great life together, and I’m very lucky and honored that they are my parents. I also got to see some pictures I don’t remember seeing before, pictures of when my parents were just dating and engaged. My mom was hot! She had this one green dress…I wonder if she still has it somewhere. I should have scanned the picture. This one isn’t as good, but it’s from around the same time:

What a looker!

I made salmon and fettuccine for dinner, but it was a lower-fat version, and mom said it was a little dry. I thought it was really good, but I haven’t had cheesy pasta in ages, so what do I know? 😉 Dad finished his plate, so it couldn’t have been all bad. Mom only ate a few bites, then wanted to go lie back down. She has some pain when she’s sitting. I asked if she wanted us to finish our dinner in her room. She said that would be nice, so that’s what we did! She got up again for some of the Angus Barn chocolate chess pie (again, the crust was a little dry, but the pie was stellar), then went back to bed.

Once she was all tucked in, I read her from one of the Mother’s Memories books that she filled out a long time ago. There was no date in it, but based on what she was saying about me in the book, I’m guessing it was around 2000-2001. She really seemed to enjoy it, and every time I paused to ask her about something, she was ready with an answer. Long-term memory comes pretty easy to her, and she seemed to love remembering some of those things.

I was worn out by the end of the evening. Dad said that even doing something small like helping mom get ready for bed was exhausting, and he pointed out that a lot of it was emotional. He keeps saying he’s going to try to get a nurse to come stay with mom sometimes. I hope he does. He said that he had tons of people willing to volunteer to help out, but he didn’t want to burden them with the actual caregiving…helping mom up and to the bathroom, especially. He’s also worried about what happens if mom falls: he doesn’t think he’s strong enough to pick her up. I can do it (what else have I been working out for?!), but I’m about 45 minutes away these days.

They’re supposed to go to the beach next week. I hope they do. Dad’s worried about the long car ride and about how to get mom up the stairs (there are a lot of stairs there!), but I know mom would really enjoy being there.

It’s helping to write all these things down. I’ve thought about trying to really write about them, write a story…but I have a feeling it’s going to be like the Peace Corps, where I just can’t write about it until it’s all over. Perspective, I guess. Or emotional distance?

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Good news and bad news.

Bad news is that mom stopped responding to the chemo, so her tumors are growing again. The doc put her back on Tarceva…I think she started yesterday. She’s already feeling more nauseated, which I’m sure is fun. I hope it works for her. I’m not sure what’s next.

Good news is that I’m moving back to NC! I’m super excited to be closer to my parents. I hate being so far away. A few years ago, I decided that I wasn’t going to do anything out of obligation because I only have one life to live, so if I want to get a job in California or Swaziland, that’s what I was going to do. Now I just feel like I don’t want to squander the time I have left with my parents. I don’t know how much fun being at their house will be just because I’m going to have an awful commute to work and not much pantry space, but I do know I’m going to be happy to be able to see them every day.

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Sorry it’s been a while since my last update. The results of mom’s PET came back okay…I’m sure we were all wishing for a complete remission, but everything seems to be shrinking, so it could definitely be worse news.

She just had a bone scan, which showed cancer cells in her ribs and spine. They aren’t sure if those cells have been there for a long time and if the Tarceva might have stopped their growth, or if these cells are relatively new. What they do know is that they’re slow growing (good) and unaffected by chemo (bad). They told her something like…it’s nothing to worry about until you feel pain, and you’ll know if it’s bone-cancer pain because it’s unending and excruciating. Sounds like a blast.

Mom’s still having issues with her energy, which might be a result of the chemo or because of her thyroid. Nobody knows. She also said that she’s afraid the effects of the chemo are stacking up…after each treatment, she feels worse than she did before. I hope it starts to get better.

I’m planning to go back down to see my folks the last week in March, which will be nice. It feels like it’s been a long time…and I guess it has been since January?

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And So It Begins

I’m not really sure who’s reading this these days, especially since I haven’t updated it since September.  I was glad to have nothing to report!

Unfortunately, mom just found out that her Tarceva isn’t working anymore and the cancer is back in almost all the places it was before she started taking the medication.  It is present in smaller amounts, which is good, but it’s all still there.  They want to start her on chemo immediately, a delightful blend of Carboplatin, Pemetrexed, and Bevacizumab.  Mom says that she will have to have the treatment once every three weeks for the rest of her life, “however long that might be,” she says.

I’m not really sure how I’m feeling, which is why I haven’t posted sooner.  I’m kind of numb.  The Buddhist part of me was interested to notice how nothing has really changed.  Here in this present moment, I’m still over six hours away from my mother, and while I think of her often, her illness is not something that’s a part of my every “right now.”  So in that sense, it doesn’t make a difference if she’s taking a pill or having to get chemo.  I think things will be different once I make my way down there tomorrow.

Something else that has buffered the shock is the desire to know more about the treatment.  I always said that if mom had to go through chemo, I’d move back home to be with my parents to help them both out.  I imagined that mom would have to deal with the immense fatigue, vomiting, pain that usually accompanies chemotherapy.  From what mom says and what I was able to learn on the Internet, though, this particular cocktail of drugs doesn’t seem all that bad, relatively.  There are some possible severe side-effects, but from all the abstracts I read, it seems like they were extremely rare in the clinical trials.  More common side-effects are those from which mom already suffers: nausea, low energy, skin rashes.  She said she won’t even lose her hair again, and they told her she could drive herself to and from the treatments, so it can’t be all that bad (not after I was reading the suggestion that caregivers should carry a bucket in the car so patients can throw up on the ride home after treatment).

And the success rate seems promising, too.  I’m not well versed in medical jargon, but my grad school career thus far has enabled me to at least make heads of these kinds of things.  83% at 12 months isn’t that bad, considering.  Mom said her doctors told her they had patients on this regimen for 1.5 years and counting.  That’s something.

Mom brought up one point, which was that she wasn’t sure what they were going to do if they found her brain tumors had returned.  The Tarceva was supposed to keep them under control, but chemo apparently can’t cross the blood-brain boundary, so if they come back, she’s not sure what they’ll do.  I hate to think of more radiation.  That definitely wasn’t any fun.

I hate that I’m so far away, and I hate that my mom might not make it to see her grandkid (eventually, people…not pregnant yet).  I am blessed, however, in the assurance that both of my parents will always be with me and will always be a part of every breath…in that way, she will most definitely be with me to help me raise my child, in body or in spirit.

Anyway, it’s rough.  We leave tomorrow for a nice long vacation at my parents’ place.  I volunteered to take mom to her first chemo appointment (she made it seem like she wanted to go alone, but I just can’t imagine), which is  Monday afternoon.  I’m excited to be there for Christmas.  I love how she decorates the house, and I love the Christmas spirit that fills it.

Happy holidays, everyone, wherever you might be!  Please keep mom in your thoughts and prayers.

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