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Monthly Archives: June 2014

Taking control

I’ve talked about control before, and how I need to learn to let it go. Control is an illusion, yes?

But I guess this is a different type of control.

Mom had her infusion on the 20th, and since that point has had some up and down days. This past couple of days she’s been feeling okay, but kind of limiting her activities so as not to overdo it on any one day. And of course, with the chemo, comes the hair loss. But for mom, who is 10 days out from her first infusion, the hair loss hasn’t started yet. But her appointment for her wig fitting–sans hair–is in two days. Her hair isn’t even “shedding” yet, but we’re keeping the appointment.

Why?

Mom has plans over the 4th of July weekend, the wig dresser is unavailable after Wednesday of this week, and so we are kind of running out of options. When we talked about this last night, the choices included postponing the wig appointment until next week–which is already busy with three appointments–or going through with the appointment even though her hair is still on her head. I reminded Mom that she IS going to lose her hair, it’s not a question of if but when. And since she has plans for the weekend and wants to not have to worry about “shedding” and or losing her hair the day before (or day of) her plans, why not take control? Why not choose WHEN she loses her hair? Why not tell the stupid chemo FUCK YOU (which I did not say to my mother, obv) and decide when her hair goes. She can’t control the IF, but she can control the WHEN.

Wednesday’s appointment remains, and we’re making it a fun affair by going to lunch before with her long-time friend. And then all of us will tromp to the wig lady’s shop and we’ll laugh (and maybe cry) while Mom gets her head shaved. Then we’ll make her try on ridiculous wigs and take pictures of her, which we won’t share with anyone. Then we’ll get her new wig shaped and styled and we’ll leave. And Mom will be able to take a couple of days to get used to wearing the wig before she goes out over the weekend. And it’ll be done and we’ll take the next step, whatever it is.

Control. In a good way. Who knew?

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To sleep, perchance NOT to dream

Please, I’m so tired. I don’t want to dream, because my dreams always end up being nightmares.

Last night (or early this morning, more specifically), I had a stupid snake dream again. This time Hub was in the dream with me, and I was upset that I thought he forgot to let Le Moo out before we left the house first thing in the morning. And we were somewhere where there were snakes all over us and I kept trying to swipe them off of him because they were tangled around his shoulders and in his hair (which is down past his shoulders).

It sucks. I know I’ve said it before, but your bed should be comforting and relaxing…it should give you rest and rejuvenation. Instead I feel like I’m always fighting for comfort and sleep. I’m always so restless and uncomfortable, whether it’s body aches or temperature, and I end up getting up two to three times a night to go to the bathroom. I think it’s because I’m uncomfortable and awake, otherwise I think I’d sleep through the night. I don’t know what to do to change things, which is the most frustrating. And I wake up so early these days and can’t get back to sleep, so I’m exhausted all day.

I know stress makes this worse, and for damn sure I’m stressed.

This morning, post-nightmare, I felt anxious. I wanted to type “I felt SO anxious”, but truthfully I know I’ve had it worse. But after not dealing with anxiety attacks for a while, I guess I didn’t immediately remember how bad it CAN be. I was anxious, though, and I felt my breath coming too fast. I couldn’t get it to regulate, but I knew full well that it was the nightmare affecting me, and that my stomach was upset. When my stomach is upset, I get anxious. I think I dozed for about 20 minutes, tossing and turning still, then gave up and got up. Now I’m downstairs in my family room, feeling like I could sleep for a couple of hours. But I don’t sleep during the day. I NEVER sleep during the day, no matter how tired or sick I feel. I may give in and lay down in bed, but sleep never comes. I end up laying there staring at the ceiling or listening to music or the tv.

I’m done, ya’ll. This sleep thing isn’t new, but today it just felt overwhelming again. I want so much to feel rested, but I fear that will never come.

 

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Ripples

We made it through the orientation session for Mom’s chemo, and then the first infusion itself yesterday. The facility was nice, the nurse was really great, and Mom had no allergic reactions or issues. The worst part was that she was annoyed at having to sit around for so many hours. The infusion center only allowed one person to sit with her at a time, so my father and I swapped out every hour or so. I would sit in the waiting area and he would sit with her. Then when he needed a break, he came to get me and I went and sat with her.

We crocheted, we talked. She played games on her iPad and read her book. We made it through the day with no issues. She had lunch during the infusion, I ate in the waiting room. My dad walked to a restaurant in the main hospital and ate while I stayed with Mom. I brought a ton of things to do–two tablets, my crocheting, my phone–and I kept myself busy. The infusion room were large and I felt like just in our area, there were about 15 people. The infusion center works with all kinds of infusions, not just cancer, so there were all types of people–ages, stages of health, genders. It was surreal, and I felt like I didn’t know whose life I was living. I don’t know how else to explain it, other than I never expected to see my mother sick. And I never expected to sit with her in an infusion center. And I never expected to look at her and SEE my grandmother. All of these things converged on me at once yesterday.

Today I can see the manic side effect in my mother already today from the steroids they gave her pre-chemo. There’s a huge list of side effects for her–including hair loss, of course–that we are trying NOT to anticipate. She’s as prepared as she can be, and from that we are going to take it one day at a time. And deal with what happens on that day without trying to anticipate what will come next…what will get worse or not.

I’m so happy that I’m able to help my parents. But I’m afraid of letting them down if I get sick, or can’t live up to their expectations. I know they would be able to navigate this without me…I’m not so vain to think they can’t handle things. I keep reminding myself that they would be okay, and that I’m going to do the things I can. And let my brothers and others help when they can.

And enjoy the time I’m spending with my parents no matter the situation we’re in at the moment. We can still have fun in the infusion center, so that’s what we’re going to do when we’re there.

I feel rambling. I’m going to stop now.

 

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A stitch in time

My mom crochets. My grandmother used to crochet (and knit). I, in fact, still have lots of Barbie doll clothing that my grandmother knitted and crocheted for me. I have other pieces that my mother sewed for me. They are in a weird, flowered suitcase straight out of the 70s. The suitcase used to live in my guest room so that I could make sure nothing ever happened to it. Here in this house, the suitcase is in the basement, but on the top of a bookshelf where it can’t be touched by any flood water (our old house had a basement flood once). Those items are very important to me, even though they haven’t been used since my childhood.

My grandmother tried to teach me to crochet. The best I ever did was just as square, because I would get lost or frustrated and give up. I never learned to knit. My grandmother figured if I couldn’t crochet, knitting was out of the question. Years and years later, I discovered a knitting board, which I purchased and became obsessed with for a brief period of time. I made hats and scarves for lots of people, some with fancy fun yarn, some with some cool patterns. Then I started having more muscle issues, and I realized that using the knitting board was bad for my posture the way I was using it. I had to look down, it hurt my neck. I had to hunch over my lap, it hurt my shoulders and back. And the constant stress on my fingers and hands made them hurt. I ended up giving it up because although it was relaxing to do, it made me hurt a lot. I have two different size knitting boards, one is about 18″ wide, the other is 28″ wide. Both of them have half-started projects on them that have been sitting idle for years. I miss it, but every time I try to pick it up, I end up in pain again and I put it away. I took the smaller knitting board with me to the hospital during my mother’s surgery, but I literally used it for less than half an hour total, and even then it was in fits and spurts just to keep my hands busy. Then I put it away again.

My mom was crocheting lots of premie hats with leftover yarn she had. She made them and donated them repeatedly to different hospitals. She had to have made more than a hundred of them over a couple of years. Then she stopped, I think because she was busy with other things and I kind of think her hands started getting somewhat arthritic. But I know she misses it, and I know it helps her relax. And I know she has more time on her hands these days than she used to. I encouraged her to pick it up again and do something small. When we went to her wig appointment, they indicated that a lot of the chemo caps they have are donated because they have clients who can’t afford hats, so they offer the donated hats to those clients. And there was conversation about Mom’s crocheting and the premie hats, and how maybe she should do some chemo caps.

The opportunity to do something, to take herself outside of her own head was good. Mom went to the internet to look for patterns and realized that you basically can do any hat. So she worked some stitches and made a couple of hats. And then I invited her to go to the yarn shop that is about ten minutes away. So off we went on Saturday to shop for some fun yarn. It was so lovely to be in the moment with her, to touch the yarns and discuss the colors. To laugh and talk about what would work and what was pretty and what was soft. We bought four different skeins of yarn, two for her and two for me. And today, I went over to her house and sat at her kitchen table and she tried to teach me to crochet again.

And while she worked on one hat and I worked on the mess I have that may or may not ever be a hat, we talked. We talked about nothing and lots of things. My niece’s upcoming wedding, my brother and his wife, my other brother, my parents’ basement remodel-in-progress. The dogs. The birds. The yard. Her appointments. A drug trial. The yarn. My horrible crochet stitches. My grandmother. My husband. Her husband. Food. Drinks. Stuff. There was no music, no television, only the ticking of the clock over her doorway and our voices (and occasionally my cursing as I struggled with the stitches and her laughter at me).

Time. I know I want more of it. Don’t we always? But at least in these moments, I have them. And I will always have the memory of them, knowing I spent my time in the right way. Not worrying about her treatment or what might be, but being there with her and enjoying the time spent together.

I’m grateful and thankful for this time. And for the friendship I have with my mom.

PS: It will never be a hat. But it makes a lovely doily…if I ever needed one of those (and in this particular color palette). ‘Tis a fine doily, English, but ’tis no hat.

See all the purdy ruffles?

See all the purdy ruffles?

(thanks to Hub for his lovely modeling job)

(thanks to Hub for his lovely modeling job)

 

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Physical therapy update

News on the PT front. For the last several weeks, E has been working on trigger points that affect my back. She’s been able to progressively go deeper on the trigger points, which is a good thing. It means the tp’s are getting worked out…it also means OW OW OW OW OW. Jeezus, that woman has tough hands.

But something has been working, because the bad knee that never wants to straighten has gotten one degree away from being straight. The other knee is almost back to being hyper-extended (which they both used to be waaaaay back before I first started abruptly having problems with them). We both kind of surmise that after all the work strengthening my muscles and then loosening up all my trigger points (varied and vast), I finally made progress. So after my appointment, E pronounced that she would see me in TWO WEEKS. It has only been about a month or six weeks since I’ve started seeing her only once a week instead of two…now I’m being moved to every two weeks. I suspicion I’ll be having withdrawal symptoms this week, since I won’t see E at all.  I can’t tell you how long I’ve been seeing her…I can’t remember anymore. It’s been probably close to 18 months altogether, considering how many different body parts I had to work on.

Starting tomorrow, it will be a week since I’ve had PT. That’s not entirely new, but we’ll see what happens in the days following. I haven’t gone without PT for more than about 7 or 8 days in all that time. Already my back and knee are tired today, but maybe by tomorrow they’ll be feeling better (I had to stand around for over an hour during training with Butthead, so….)

Anyway, the good news is, if I can keep things in good form, I can stop going to PT. While I will miss E a lot because I like her very much, I won’t miss having to go to PT once or twice a week every single week for …ever. However, I am thinking I will start going to get trigger point massage from a massage therapist (who used to share space with my PT office), maybe once a month to keep up with maintenance. Trigger points definitely come back, especially in someone like me who is not only prone to them, but has myofascial pain syndrome…kind of pre-disposing me to issues like this. On the down side, massage therapy isn’t covered by my insurance…but I’ve been paying co-pays for PT, so it will actually be less expensive for me to go to massage therapy once a month than what is cost in co-pays four times a month. And waaay less than it was costing me to go eight times a month!

So, one tentative step forward, and we shall see where it leads.

 

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Wiggin’ out

I haven’t posted in, like, a week. I don’t know, I’ve just felt burnt out, I guess. Anyway, my problem not yours!

This afternoon, Mom and I are heading out to look at wigs for her. We are expecting her to start chemo in a couple of weeks, and I wanted her to go talk to someone about a wig while she still had her own hair. I was hoping that would help us find something that looks natural on her, both color and style-wise, if the person helping us could see what her natural hair looked like. So I called a local place that specializes in cancer patients and made an appointment. The woman I spoke to was very nice, so off we go this afternoon.

My mom is not particularly vain, but she did tell me recently to make sure I let her know if she looks haggard or sick, or if she needs to fix her makeup. It’s not vanity that is pushing this, it’s that she doesn’t want people to walk up to her and say, “Awww, are you sick?” or “You look so sick!” or “I’m SOOOOO sorry to hear…” She just wants people to treat her like she’s a normal human being…and I totally get it. It’s one of the things I worried about when I decided whether or not to tell people I’d been through some severe depression and was dealing with anxiety issues. I didn’t want that to be who I was. It was all something I had or dealt with, but it wasn’t (and isn’t) who I was. She’s feeling the same way, so I’m doing what I can to support that.

To that end, we have been hitting lots of appointments last week and this week (and next week!) to get her in line to start her chemo. They want consultation appointments, second opinions, trial evaluations, CTs, MRIs, bone scans…and now the wig appointment. This week we’ve had appointments every single day except for Monday. For a woman who didn’t see a doctor for 42 years, she’s feeling very overwhelmed and like she’s on a merry-go-round. I keep trying to remind her that once this part is over, chemo is only once every three weeks…not multiple appointments in a week. Anyway, so we were getting out of the car for one of her appointments and as we rounded the back of the car I grabbed her by the arm and stopped her. When she turned to look at me, I looked her over and said, “Nope, you don’t look like a haggard old lady!” and then I let her go. She hit me, then laughed and thanked me. But I promised her and I will keep that promise, even if I do have to tell her she looks sick and/or needs to fix her makeup. It always bothered me that my grandmother (in her very old age) wore all the wrong color foundation, had crooked weird eyebrows penciled on in the wrong color, and wore lipstick that didn’t look good on her. But I never said anything because I didn’t want to upset her. My mom has asked for it, and I’ll be truthful with her.

Just like I’ll be truthful this afternoon at our wig-testing. I want her to be comfortable in whatever she decides to do, and that means she’ll want the truth about whatever it is. Of course, I wont say “oh you look terrible in that blonde wig!” (she has very dark hair), I’ll just tell her it isn’t right for her. Also, she’s got kind of olive skin tone, so blonde really WOULD look wrong on her.

We checked with her oncologist about getting a prescription for the “cranial prosthesis” and he said he would get it for her. We talked about other options for her, like nutritionist and massage therapy and things like that…none of which she wants, but it’s good to know the options are there for her. However, what they did not talk about was mental health assistance. How do they discuss chemo and cancer and supportive therapies without talking about mental health support? I was kind of appalled at the time. So was T when I told her. The good news is, my mom has LOTS of familial support, so she won’t ever have to worry about someone being available for whatever she needs. But when things move along, I will remind her that if she wants it, her insurance covers mental health support as well.

Anyone ever go trying on funny hats with their Mom or daughter or sister for fun? I hope it’s going to be like that today…laughs and light-heartedness. As much as it is difficult to have all these appointments and difficult things to do, I’m thankful that my mom is still here with me to do them. For as long as she fights–and she’s a strong woman so I’m hopeful it will be a good fight–it means I have that time with her.

Also, my mom in a blonde wig? Priceless.

 

 

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