End of a fucked up year

End of a fucked up year

My facebook feed is full of people saying things like, “This is the worst year ever!”

I’d planned to write a post that was a bit more uplifting. You know, talk about some of the good stuff that happened this year and maybe my hopes for next year.

Then Carrie Fisher died.

I know, I know. We’ve had a lot of celebrity deaths this year. And sad as I was about Prince, Alan Rickman, David Bowie and some others, I felt the sadness and moved on with my life. No more new music or movies from them. It’s sad, but that’s life.

But I cried for Carrie.

Yes, I’m a Star Wars geek. And of course, I imagined myself as the tough warrior Princess  growing up, blaster in her hand, riding the flying scooter and looking Darth Vader in the eye without fear, even though she was a tiny thing.

But that’s not why I cried for her.

She had a life beyond Star Wars. She had bipolar disorder and addiction issues. While it may seem like those were in her past, some things you never get over. As she says said:

At times, being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of.

She discussed her mental health issues the same way she discussed anything, frankly, matter-of-factly, and with a large dash of sardonic humor.

While her writing style and genres were not in my normal repertoire, when I was trying to come to terms with being bipolar, I looked at some of her work: Postcards from the Edge and The Best Awful. I mostly found her characters kind of flat, 2-dimensional, and again, not my usual genre of reading. But they are obviously semi-autobiographical as the main character tries to come to terms with her addiction and mental health issues while maintaining a career in the public eye and raising a daughter.

There’s a couple of chapters in The Best Awful where the main character goes off her meds. She has what seems like a good reason for not taking them one day. But the next several days, she comes up with some other justifications. You’re in the character’s head, so you see what she’s thinking. You can tell that she’s acting a bit outrageous. She sort of knows she’s acting odd. Her friends/family ask her about her meds and she tells them that she’s taking them.

And the whole sequence reminds me of some times that I’ve gone off my meds. It made sense to me in a way that reading other books didn’t. I’d read Kay Jamison’s An Unquiet Mind, and her descriptions were sort of there, but not in the way Carrie’s were.

I have another New Year’s post running in my head, but wanted to write about Carrie. Then her mother died, upstaging her once again. Seemed. . . fitting, somehow.

Thanksgiving

Thanksgiving

Thanksgiving.

This holiday has such mixed feelings for me. First there’s the fact that this isn’t a holiday for everyone. The Thanksgiving story we grew up with, with the Puritans and the Wampanoag isn’t really a holiday for Native Americans. But, many cultures have a harvest festival of some sort, celebrating the end of the harvest season and preparing for the coming winter, so I can look at it that way.

I try to practice gratitude on a regular basis, even if only in my personal journals, so setting aside one day for giving thanks is a little . . .  weird.

I grew up with a holiday where we all gathered at my grandparents house, sometimes with 20+ extended family members, sometimes with family friends. It was an all day thing, starting with breakfast and ending with the women cleaning the kitchen and bagging up food to take home while most of the men sat around and drank. My daughter and I had a tradition of sitting home in our pajamas all day and when she got older, watching Asian horror movies.

This year, I was invited to a brunch with my daughter’s boyfriend’s family. It was at a country club, buffet style and very nice. This evening, we’re warming up Boston Market food to eat with my roommate and his son. I’ve been more social than usual.

I do have things to be thankful for, in particular that I had access to healthcare this year and that I seem to have come through cancer, surgery and chemo not much worse for wear. I’m officially in remission, and that’s wonderful. I won’t use the word “cured” because it can still come back and I’m not going to jinx it.

I’m thankful that my daughter seems to be doing well, she’s intelligent, thoughtful, compassionate, kind and much more self-disciplined than I’ve ever been.

After many years of being unemployed and underemployed, I’m working at a job I like with good people, decent pay and great benefits. While I’m carrying a bit more debt than I’m comfortable with at the moment, I’ve got a retirement account now and I’m building my credit and savings.

I have great friends, in real life and virtual, who have helped me through rough times in a myriad of ways.

For today, that’s enough.

Cycle 12 and beyond

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Cycle 12 was pretty uneventful, except that it was the last. So, my last day of chemo was August 26, 2016.

The weird thing is that peripheral neuropathy got worse in the weeks following the end of chemo. My feet and fingertips tingle all the time now and my fingers feel kind of “dumb” – I can’t do some things requiring dexterity.

I had a follow-up appointment with my doctor a couple weeks later in early September. I’m eager to get my life back on track, to start exercising again, to have food taste normal again, to have my hands and feet stop tingling.

I had planned to start lifting weights after chemo was over. My doctor said I should be thinking more along the lines of resistance bands, not barbells. That was kind of a let down. He also suggests yoga, tai chi, and walking, all of which are doable for me now, if I can just make myself do it.

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And now it’s November and I never finished my post. 🙂

I had a CT scan and doctor’s appointment last week and so far everything looks good. I’m in remission. I’ll get a colonoscopy in a couple months and another CT scan in 6 months.

My hair is growing back. I’ve regained all the weight I lost. While that’s not a fantastic thing, because I’m overweight, my oncologist says, “Sick people don’t gain weight!” So I guess I have to accept that for now.

I’m not as physically active as I should be, as I’d like to be. Part of that is because I started a graduate school program through University of Maryland so my time is somewhat limited. I’m taking two classes and they are simply a LOT of reading and writing.

The bpantsuitlog will likely take a different direction now, though I’m not sure what direction that’s going to be. I could write about things I’m learning for my job and my degree. I could talk about dealing with the VA. I could talk about knitting. I could talk about cats. I could talk about politics. More than likely, given how my brain jumps around on topics, I might talk about all those from time to time.

 

 

Cycles 9, 10, 11. . .

Cycles 9, 10, 11. . .

So, yeah, haven’t been good about keeping up with the blog or a few other things, but I’m on an upswing now, so let’s try to document some of this.

Cycle 9 – started July 6th

I was well into Cycle 9 when I posted about the last cycle, so the the henna pics was from cycle 9. This was the cycle where I stopped taking Oxaliplatin, like the doctor suggested in cycle 8. This makes the whole process a lot easier. It means I don’t get one of the “pre-meds”, cutting 20 mins out of my appointment (benadryl – which makes me sleepy). I only get one main med at my Wed appointment before the poison pack.

It means that the cold sensitivity is gone. I can touch metal now. I can EAT and DRINK cold things. No more room temp sodas and I can have ICE CREAM and my favorite frozen juice pops.

Cycle 10 – Started July 27th

Most of the time, I get a private room for my main treatment day. In fact, for the first 8 cycles, it was always the SAME room. This time, they were really full, so I got put in the common room that has about 6 treatment chairs.

Chandra did a second henna pattern this cycle. The henna we used was from a different source and I think it was bad. It got dark fast, but didn’t act normal and washed off too fast. So Chandra showed off her skills and refreshed it during my treatment. All the nurses and my doctor had to come over to see.

 

The weekend after I had treatment, my roommate’s son came to stay for an overnight trip. He was visiting his aunt in the metro area, so spending a day here was good for both my roommate and his son. I took this pic at breakfast the next morning. It was nice to see Roomie looking so happy.

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The next weekend, I got to see a friend that lives in Reno for a couple of hours. We went to Ettore’s, a local bakery & cafe. Yum!

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Cycle 11 – started Aug 10th

This cycle, my usual oncologist was on vacation, so I saw a different one. She was amazed at my energy and that I was still working. I asked when they’d want to take out the port in my chest and she’s leaving that up to my usual oncologist.

The only major change this cycle is that for the first time, the neuropathy caused by the Oxaliplatin is worse than it was while I was taking the med. I’ve done some research and this isn’t that unusual, but it’s still annoying. This past week, my feet hurt so often, I’ve been going a little crazy.

I had a massage today. My usual massage therapist usually does my feet. Today I told him that I wasn’t sure if a massage would hurt or help my feet. He suggested doing light pressure and letting me decide if he should continue. He was very light, but when he was done, my feet felt better. Not fantastic or normal, but a lot better. So, yay, massage!

And a third Henna Head pattern (you can see the cable of my “poison pack” attached to my port in a couple pics):

I’m letting the hair start to grow back now, so no more henna head. I got a lot of complements on it for the whole time I’ve been doing it, especially my daughter’s lovely artwork!

During this cycle, I found out that the small company I used to work for in various roles for several years went out of business. That’s very sad for all the people that kept working there because they believed in what the company was doing. I feel bad for the founder of the company. She put many years and all her energy into building that business and now it’s gone. 😦

But it also makes it clear that it was right for me to leave. I’m so thankful for having a federal job right now, for the lovely women at the Women Veterans Alliance and Women Vets Connect for encouraging me to apply for something different, and for the people at my current job that have been so supportive.

I went to lunch with a couple of other people that used to work there. The young pregnant woman is normally a very tiny thing, very slender. Seeing her with a belly is just so adorable!

My 12th and LAST chemo treatment is on this coming Wed, August 24th. I really am ready for food to taste NORMAL again.

 

Cycle 8

Cycle 8

I’m a little later posting this than I intended to be, about a week later.

Cycle 8 started on June 29th.

We kept the oxaliplatin at a lower dose that cycle and the doc discussed stopping it for cycle 9. He continues to say I’m doing really well, much better than most through the process. We still haven’t had to delay any treatments or talk about stopping. He’s amazed I’m still working.

My hair thinning was getting sort of ridiculous. The last time I tried to dye it, I still had a lot of red on the hair and tried to do a turquoise color on top of it. It mixed with the red and made a nice dark purple, but my SCALP was turquoise.

That was it. I decided it was time to go bald.

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I went to a hairdresser to have it done (even though roomie had been begging to let him do it for ages). It was nice. They did a scalp massage, hot towel treatment, she used clippers on the shortest setting. I probably could have left it like that, but part of the plan was for Chandra (my daughter) to do henna patterns on my bald head, so she the hairdresser then went over it with a straight razor. She was very careful, no nicks or anything. It was a good experience. I felt pampered.

I posted the above pic on Facebook, and people commented that I was “bad ass” or “brave”. It didn’t feel that way to me. It felt like this was just the next step in the process and I might as well embrace it instead of fight it.

The next day, Chandra did the henna. I showed her 5 or 6 images of other bald henna heads that I liked, discussed what I liked about each of them and then just let her have it. She combined elements from different patterns and did some of her own thing. I think it turned out awesome.

 

These little things make me feel good emotionally. But this still isn’t an easy process. It seems, based on things I’ve read and people I’ve talked to, that in some ways, my road has been a bit easier than most other people’s. I can eat most of the time. I’m maintaining my weight (in general, I still need to lose, but during chemo, the docs prefer if you maintain). I am able to keep working most of the time.

But I also feel really weak and tired. If I wasn’t working, I’d probably be sleeping more than 12 hours a day. When I went for a short walk around the apartment complex (to catch Pokemon, of course!) I had to sit and rest several times. I did a big grocery trip for the first time in weeks, and by the time I was at the checkout, I was shaking and had to actually accept help out to the car with my bags (which I never do). I HATE being weak (especially when the compliment I get the most is about my mental/emotional strength. I like to try to match my physical strength to the perceived emotional strength – if that makes any sense).

I’m not the best housekeeper in the best of times. I’m grateful that roomie has taken on most of the domestic duties recently, especially the laundry (the laundry room is a longer walk across the complex now in our new apartment). Don’t know what I’d do without that help (maybe bribe my kid to come over and help sometimes?) I can’t carry the laundry. I can’t take the full trash bags out. I can’t stand up long enough to clean the kitchen in one go.

The way my treatment works is that on Wed of treatment week, I get medication over a couple of hours. Then I take one medication home with me in a fanny pack, attached to my port. Friday, I go back in and they unhook the fanny pack from my port. At this point, I’ve got the maximum poison in my system. Also at this point, I start to feel really listless and sick. I still haven’t actually vomited since cycle 2 (which I think is AMAZING), but I get this particular . . . bile taste in my mouth/throat. It’s very specific. It’s different than other times I’ve been sick (pre-chemo), even different from the green bile I vomited when my gall bladder rebelled. I tend to think of it as “chemo-sick” rather than simply “sick”.  And I get gassy, burping more than ever before in my life.

This is better than many people have it. I know this. But it’s still not easy.

Cycles 6 & 7

Cycles 6 & 7

 

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Relaxing with my kitty blanket getting cycle 6 meds. And wearing my Unconference tshirt!

Cycle 6 – Half-way!

Well, cycle 6 really kicked my butt.

I was nauseous the entire time, needing to take the nausea medicine every day. I was also really tired. I literally slept from Friday afternoon through Sunday afternoon, getting up only for potty breaks and to try to eat something. During the week, I left work early and came home and went right to bed.

I’ve been getting massages every couple of weeks, on a non-chemo weekend. During this cycle, I stopped at a shop near my massage place. They were having a sale and one of the items was something I thought they’d stopped making. They only had a handful, so I grabbed a couple and stood in line (a longish line). I started to feel sick while standing in line and couldn’t stay there long enough to make my purchase.

I barely remember those two weeks at all. Except, the second weekend my daughter and her BFF came over and we had a henna party. Chandra taught herself how to do henna patterns when she was still in high school and she’s really good at it (I think!) She’s considering maybe starting a little side business doing them.

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Cycle 7

In cycle 7, the doctor said I’m holding up “remarkably well”. I’m still

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Roomie, sleeping while I get treatment.

maintaining my weight after the initial weight loss in the first two cycles which means I’m eating. My blood counts have been good. I can see my test results online through MyHealtheVet and I know my white blood cell count is low. I mentioned this and he said, “Well, there’s low for normal people and then there’s low for chemo. You’re doing great for chemo.”

Not like it’s anything I can control, but each cycle that I’m doing well with means the quicker this can be over. When I started, they told me the plan was for 12 biweekly treatments, which is 6 months, but to plan more like 8-9 months. That’s because almost everyone at some point along the way gets too ill or their blood work says they aren’t healthy enough to receive treatment and it has to be postponed. We haven’t had to postpone any yet, and now I’m more than halfway through.

At this cycle, the doctor reduced one of the medications, Oxaliplatin. This medication causes the cold sensitivity (which is really freaky) and “peripheral neuropathy.” You know that feeling you get when your foot falls asleep and then starts to wake up? The pins and needles feeling that actually hurts for a minute? The neuropathy is like that – and you can’t really control when it happens, and it can be hands or feet. My neuropathy has been lasting longer into the cycle, but it only lasts for a short time each time it happens. It’s normal to reduce or even eliminate this drug partway through because the neuropathy indicates nerve damage – and can become permanent. They use the drug because it sort of boosts the effectiveness of the main medication (5-FU), but only slightly.

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My BFF since middle school sent me this. It says, “She believed she could, so she did.” I love it!

My appointment for cycle 7 was earlier in the morning than usual, and Roomie and I both mostly slept through it. Usually, I’ll read or knit or watch something on my phone, but this time, we both conked out.

I’m starting to leave work early a little more often now, but I’m still working most days.

At work, I was working on setting up a desktop computer for someone, and old tower style. I was surprised at how weak I felt lifting it. I had to put it on a cart to get it to my desk instead of just hauling it over like I normally would. Then, today, I was in the stock room looking at inventory, and I couldn’t stand up for more than a few minutes. This felt like when I went to the store and couldn’t stand in line. The walk out to the parking lot at work is pretty intimidating now, especially in the afternoons.

With everything going on, I haven’t been consistent with my psych meds (for bipolar). I’ve been taking the mood stabilizer and the anxiety meds, but I’d dropped taking the antidepressant. Apparently, this is fairly noticeable. My roommate talked to me the other evening about it, mentioning that I’ve been moodier than normal and downright grumpy and asked how I was doing on my meds. This is something that my BFF, roomie and daughter are all “authorized” to ask me and tell me if they notice changes. I try to be self-aware, but sometimes I don’t see the changes until they’ve gone on awhile. So, yeah, getting back on those.

Cycle 8 starts on Wednesday this week. That will be 2/3 of the way done. I just want this over with. I’m tired of being sick and tired and WEAK.

 

 

 

Still here

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I haven’t had a lot of time or energy to write lately,  but I’m still here,  still chugging along.

It seems every cycle adds a little something to the side effects column.

Just before cycle three,  the doctor asked me if I was experiencing neuropathy yet.  Nope,  hadn’t had that issue,  just the cold sensitivity (which lasts a little longer each cycle).

Guess what happened very soon after I got home that cycle? Yep, the neuropathy hit.  Only lasted a few minutes each time and only for a couple of days,  but again,  this one lasts a little longer each cycle.

Cycle four added “first bite syndrome” which is is own kind of fun – but was milder in cycle 5.

Cycle 5 didn’t see new side effects,  but they lasted longer this time.  I needed to keep taking my nausea meds for well over a week. Earlier cycles,  it was 3-5 days.

Work continues to be amazing and working with me and the time off I need. People have donated leave to me, enough so that if I keep working when I can, I won’t have to worry about missing any pay.

I worry that I may get too sick to work much at all the last couple of cycles, but I’m fighting to keep working as much as I can.

In other news,  my roommate and I moved to a two bedroom apartment in the same complex I’ve lived in for 8 years.

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They are renovating the apartments and we got one with all new appliances,  wooden floors in the kitchen,  bathrooms and entry way,  new carpeting,  new countertops, etc. One of the best things,  as far as I’m concerned is that it faces east. The apartment I was in for so long faced west.  In an area where is not uncommon to have several days of 100°+ each summer,  that can make for a very hot apartment and high air conditioning costs. So,  now we get morning sun instead of late afternoon sun and already I can tell how much better that’s going to be this summer.  I’m already sitting out on the porch more than I ever did in the old place.

On moving day,  we had a lot of help that I’m grateful for.  I worked as much as I could,  but by lunch I was wiped out and feeling a bit ill. A guy from my work came with a big truck and a dolly.  My daughter and her boyfriend brought another couple and two more young men to help. It was one of the smoothest moves I’ve ever done. It’s been a couple weeks,  and we’re selling in,  still unpacking,  trying to make things more organized and neater than they were before.

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Last night, my roommate and I went to military appreciation night at the River Cats (local minor league baseball team). There were other women from the Women Veterans Alliance there, and most of them lead the 7th inning stretch.

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I’m trying to be social on my non-chemo weekends. I’m not the most social person, but I need to maintain my relationships and stay connected to the world.

3rd Cycle

3rd Cycle

At my 2nd treatment, I only talked to a nurse, didn’t see a doctor.

This time, I saw a doctor and we talked for a bit about my side effects and how things were going. He was concerned about neuropathy – numbness/tingling in the hands/feet – which I had not really been experiencing. I was concerned about the nausea/vomiting. I’d been taking ondansetron but if I took it every 8 hours, I’d still get sick about hour 6 or 7.

He asked if I’ve taken ativan, and yes, it’s one of my normal meds. I normally take 0.5mg mostly at night when I’m having trouble sleeping.  He suggested bumping it up to 1mg and taking it with the nausea medicine. He mentioned that the other anti-nausea medicine they might recommend can increase mania – and that’s not something we want to do.

Hooo boy. I basically slept all weekend. No vomiting, and I ate more than the weekend after the first two cycles. I think I maintained my weight, even, instead of dropping 10 lbs.

Of course, this cycle – after I told the doc I wasn’t having an issue – I got to experience some neuropathy. It was short-lived, so I could deal with it. The cold sensitivity seems to be lasting longer. I had to have my roommate cut up kielbasa and carrots for a soup I made yesterday.

The big news is my hair.

Last weekend, with the WVA event I played with my hair more than normal. I realized over the next week that my hair was thinning much more than normal for me. 20160420_20173420160420_201815

So, I went and got my hair cut. It’s actually a little longer than I originally wanted, but it does some 90s “bed head” stuff that’s kind of fun. Also makes playing with colors a lot easier. 🙂

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Women Veterans Unconference


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This weekend was the first Women Veterans Unconference.

I’m glad that I was feeling well enough to make it for at least a few hours each day. I didn’t do everything I’d intended to do, but I’m still glad I was able to make it at all.

I’ve been a part of the group that started this since the beginning of the group (Women Veterans Alliance, link in the blogroll). Over the last several months, between tutoring on Thursday evenings and now deal with the cancer shit, I haven’t made it to many meetings or Mix & Mingle nights lately. I’d missed the camaraderie; I’d missed my ladies!

I was touched by how many people kept asking about how I was doing and letting me know that if I need anything, to just ask. It’s nice knowing people are there. I was pretty isolated for a really long time and it’s just great knowing I do have people I can contact now.

I brought my roommate to the conference, too, as a caregiver (after all, he’s taking care of me) because I thought he might get something out of it, too. One comment he made was that it felt weird to be one of only about 3 men in the room full of women. Yeah, that’s how women in the military (and often in science/tech fields) feel all the time. . . . 😛

Cycle 2

Cycle 2

This second cycle was a bit different from the last one.  Treatment was on Wednesday.  Thursday,  I worked,  but forgot to bring my nausea medicine to work with me.  About 1:30 I was starting to feel bad and went home. 

Friday wasn’t as bad this time as the first cycle.  Saturday wasn’t, either.  I still didn’t eat much of anything,  but I did manage to drink more,  which I think helped.  I only threw up once over the weekend and that was when I waited 8 hours to take the nausea meds. I’m supposed to take it 3x/day, but seems more efficacious if I take it every 6 hours. I’m going to ask the doctor about that next session.

Monday,  I worked all day and was ok,  but something Monday night,  I started to feel off. It started in the slower,  I started to feel lightheaded,  dizzy,  a bit faint. I dried off and say down for a bit,  but the feeling didn’t go away.  Then I started to get lower abdominal cramps and the nausea started building.  Roomie helped me to the bedroom and tried to get me to sleep, including giving me a big bowl in case I threw up.  Moments after he left the room,  I did. 

No idea why,  but I was the sickest on that Monday night.  I vomited a couple times. Diarrhea.  It was an awful night. 

Decided to stay home from work on Tuesday. I slowly ate a bit here and there throughout the day and was back to work on Wednesday.

I’m glad this week is not a chemo week.  I’m attending the Women Veterans Unconference starting tonight with a Roaring 20s themed party!  A chance to have fun and not think about this for awhile.