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Posts Tagged ‘chemotherapy’

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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Staring Off

This will be a short post because I’m exhausted, but I figured everyone was waiting for an update.

I had a message on my phone from dad when I was done exercising this morning. He asked what time I was coming and gave me the impression that I should hurry. He said mom was back in her fog and he was hoping I could help get her out of it.

I hurried home and grabbed the lunch I was going to eat and just took it over to my parents’ house. Mom was definitely back in her fog, just staring off into space. I got her to look at me and nod a couple of times, but she couldn’t lift her head, eat, or drink. By the time I left the house a little after 6, she’d no longer look me in the eye, nod, or react to anything I was saying.

My dad’s younger sister came down from Maryland to stay. She used to be a nurse, and she was the primary caregiver for her own mom, so she understands a lot of what’s going on and is a big help. If she hadn’t come, I’d probably take the cats and move back into my room. I’m still considering taking the cats and moving us into the guest bedroom, but I’ve thought about it a lot, and I’m okay with commuting for now.

I’ve been there for my mom this whole journey, save for her initial diagnosis. I’ve been to doctors appointments. I held her hand during her first chemo treatment. I’ve camped out in hospital rooms. I’ve spent as much time as I could with her and my dad over the past several months. I’ve said everything I need to say to her, and I’ve heard everything from her that I need to hear. I would love to be with her at the end, but there’s just no predicting when that will happen. It might happen tonight in her sleep. It might happen tomorrow. She might hang onto the Scott stubborn streak and stick it out for the rest of the week. I can’t keep vigil by her side 24/7 indefinitely. I’m comfortable knowing that my dad and his sister are there. My aunt told me that no matter what, I shouldn’t feel guilty, whether I stayed or went home. I’m trying not to.

My plan is to get my week’s cooking done tomorrow morning, then head back over there around lunchtime. I don’t know if I’ll stay for dinner or not. Then I’m clear to work from their house, though I have a doctor’s appointment and a vet appointment on Monday.

My parents are my best friends. This is really hard on so many fronts. But we’ll make it through.

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I don’t know if I’ve moved on up to the east side or if it’s more like the south side. I’ve never been very good at geography or at figuring out where I am. Just ask my friend Jordan…I got us lost in a circular city surrounded by a giant wall. You’d think I’d have been able to find my way back by just following the wall, but no.

Mom had her PET scan a week or so ago. (My sense of time is greatly skewed these days.) It showed that some tumors are bigger while some are smaller. The only remaining option is more chemo. I’d asked mom in the hospital if she’d go through more chemo. She said that if they could guarantee it would be just like the last round, she could handle it, but if it was going to be any worse, no thanks. I can’t say I blame her. Spiritos (the oncologist) also mentioned to my dad that mom’s mental state is not related to the cancer (stroke? delayed onset of radiation? nobody knows), and that even if chemo worked, it wouldn’t help any of her other symptoms since they’re not related. They’ve decided to wait a few more weeks without changing anything to see if mom gets any better in terms of her ability to walk and talk, etc. She’s seeing a nurse and physical/occupational/speech therapists regularly.

Dad fired that Crystal girl. Well, not Crystal herself. Someone other than Crystal showed up one day and left mom’s catheter line open so it got all over the place when they moved her. So he fired the agency. Dad’s younger sister came to stay for a week, and I know that helped a lot.

My birthday was last Thursday. We usually all go out as a family to celebrate, but mom didn’t feel up to it this year, much as she wanted to go. I called their favorite restaurant, Saint Jacques, and the owner agreed to put a big take-out meal together for us, including some wine to go. He’s a very nice man. I know mom really appreciate it. Of course, she decided to fall right before dinner, so she didn’t feel up to sitting through the whole thing, but at least she got her foie gras!

I still feel guilty about leaving, but we’ve all got to get this stuff figured out. I really need to start working on my thesis…I was supposed to get down into it today, but I found that a day 100% off of everything (exercise, school, work, cleaning, unpacking) would be more useful than trying to do actual work. I’m going to try to work out something with my manager so I can work from my parents’ house one day every week on a regular basis. That will give dad a chance to get out, at least. They have a lot of great friends bringing meals and offering to hang out and help around the house. I’m still hoping we’ll figure out a routine and settle into something soon.

Mom, when she was about my age

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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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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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I was lucky enough to get to spend about five days with my parents last week (thankful for a flexible job!), and it was really good to see them. I think we’re all trying to settle into what mom has called her “new reality.” I’m obviously dealing with my own issues, and it’s difficult to talk about them with my parents. I don’t want to upset dad, and I don’t want to make mom feel like she’s upsetting me. She’s not.

Anyway, mom’s doing well, all things considered. I know she’s just tired of being tired. There are a lot of things she wants to do, and she hates not having the energy to do them all. I don’t know what I’d do if I were in her shoes. I know it’s hard for her to think that this might just be something she has to normalize to, that it might not get much better. I personally think that it can get better with some minor tweaking in terms of diet (what she’s eating, when she’s eating, etc.) and exercise (exercise gives you energy, but you do have to have enough to start with in order to do it). But I’m not her, and only she knows her own body well enough to figure things out.

She has her next chemo treatment on the second, I think. Then they will schedule the PET scan to see where they go from here. I hope they can cut back on her medicine and that she gets some of her energy back. I know that would make everyone feel a little better. 🙂

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