Saturday, June 23, 2018

"Statistically Significant"

Earlier this week I went to MD Anderson, where I did blood work and had a bone density scan. The medicine I am taking to protect me from the return of the breast cancer affects bone density (thanks, Arimidex). The medicine is "a hormonal treatment that helps fight breast cancer by lowing the amount of estrogen in the body." Estrogen is rather necessary for strong bones.

My "statistically significant" numbers had not moved in the direction I'd hoped they would move. So I will return in six months to see My Colon People and My Breast People. I will see My Liver People, including the Livid Liver Lady, in April. Gosh, I hope I haven't forgotten anyone. I will also have to forge a new relationship with The Bone People. I'm sure they are friends I haven't met yet.

My PA told me she has seen women increase their bone density. She made suggestions. The last thing I told her was that I felt like a challenge had been issued.

Deep inside I am disappointed and discouraged. The odds are stacked against me. I've done a lot of reading about ways to increase bone density (you sure can find a lot of quack-a-doodles when you search for health issues/solutions). For me to expect a positive change as soon as six months is probably not realistic. One might be inclined to think "Why bother? I'm fighting a losing battle." I am not that one.

I'm positive I'm not the first cancer patient caught between a rock and a hard place. I could choose to go off the Arimidex. Plenty of women have done so because of intolerable side effects. One night I woke up due to pain in both of my hands. That pain comes and goes. Lots of times it feels like I've caught a fast thrown hard ball without a glove. I decided I could live with that. 

Closer to the surface, I am feeling hopeful. I know I need a plan. I will need to set goals, track my progress, and actually meet those goals. I can't afford to be lackadaisical about this. I need to charge full on at this beast. The doing is the hard part. I have ideas on what I could do. I'm already doing a lot of the right things. I need to be more intentional with those actions. I've brainstormed and written a list of ideas to help myself improve my health. Just need to keep on moving toward better health.


“The most effective way to do it is to do it.” --Amelia Earhart






Wednesday, June 20, 2018

Still Kicking

Someone said something today about something I should write a blog post about. I'd been wanting to come here again and so I took that something they said as a message from the Universe.

But I can't remember exactly what it was we were talking about.

I'm still dealing with The Cancer (everything is going relatively well on that front).

I've still been sewing and putting together quilt tops that need to be finished. 

I'm taking swimming lessons, again, through the Wellness Program at work. I believe I might be a perpetually remedial student. I could swim if I didn't have to breathe.

I've begun walking again. I bought a Fitbit and I try to move more. I'm working on better eating habits. That will be a never ending project. I suppose all of it is a never ending project, in that I will never arrive at that place where I do it all perfectly. And then one day, I'll be gone. What will become of my never ending project?

What will remain undone?

What kind of mess will I leave behind for someone else to finish or clean up?

Saturday, March 17, 2018

It's A Mundane Cycle, Y'all


 I've been back to see my livid liver lady. It seems my liver enzymes are normal at this time, and I have a hemangioma on my liver. I go back in a year. I think it's the physician's expectation that all will be well at that time and I can "fire" him. He will be the second physician I've "fired" on this journey. I know it's a good thing. I'm grateful for their expertise, that's for sure.

When I go back to the colon oncologist in April, they may be moving me to what they call aftercare, which will be mostly a matter of continuing monitoring, only maybe not as intense (I've been to MDA for one thing or another every month since December). Though I will miss my colon oncologist and his PA, this is movement in a positive direction.

I told someone that one of the gifts of my cancer has been the heightened awareness of my limited time in this life. We all know, on an intellectual level, that we are walking around under a big hammer and we never know when it's going to fall. Our time is limited but most of the time we don't even think about that. I've been trying to reevaluate myself and my life in light of my health issues. I know I've grown. I've discovered I'm stronger than I thought. I have progressed.

But I'm not entirely satisfied with where I am. I want more, and I can't seem to pin down what "more" would look like for me. Some of the things I want, some of the ways I want to be, I'm not sure those things are me. I'd like to be more disciplined, for instance. I say I'd like to have familiar and dependable routines. I do have routines, they just aren't exactly routines I'd like to brag on! I want better routines.

Honestly, I have to ask myself, is a better routine what I really want for myself, or am I just comparing myself to other friends who are almost anally routine and thinking I fall short? I have a friend who reminds me that it's all about "the direction of correction."

But then again, since I am relatively undisciplined, with irregular routines, I am naturally more flexible. Flexibility is good, right?

I've heard people say that dealing with cancer has caused them to look at their lives, to measure their time better, to drill down to what's really important to them. In that process, some things naturally fall away. I've been thinking along these lines, but I haven't really drilled down, and I don't think I've let much of anything actually fall away. Or if I did, it was something I needed and wanted, like my walking.


I did recently begin again with my walking routine. I'm slow getting back at it. That's okay, because I am learning I can sometimes reset and begin again. We all can. All it takes is some determination and persistence! Yes! It's easy...not! But what else is there? Do I want to sit and criticize myself for what I have not done or accomplished, or for not being what I think I want to be? I don't know.

 ("You can begin again" is a message from my better self, assuring me I can begin again, putting the idea in my head. "I can begin again" is a "duh, I can begin again" thought from some other part of me. What? You don't have a committee in your head? It's a pity! "We can begin again" is a general reminder that we all can begin again, and in some areas right now in our world, it's obvious that we need to somehow begin again. "We can begin again" is also somewhat of an admonishment for me.

Oh dear, now I'm going down another rabbit trail. I attended part of a presentation on dealing with an active shooter on campus (yes, it was sobering). The officer talking said there were three ways we might react, or maybe we'd do all three. Some would be in denial, thinking it wasn't shots they heard, or thinking they could reason with the shooter. Some would deliberate and think too long about what to do. And others would quickly put together a plan and execute it as well as they could. I was listening and trying to imagine which person I'd be (even though I firmly believe none of us civilian types know for sure what we would do under those circumstances). When he said some of us might have to channel our inner wolf and act off of our indignation over someone daring to do this to us, and to our coworkers, that's when I thought, "uh-oh, that does not bode well for me." I'm not good at confronting others about being rude to me. How am I going to confront an armed man? Because, in that case, assertiveness might be the thing that saves me and others around me. While it is a shame that we have to be playing out these scenarios and planning our actions, it good to try and develop a plan before the disaster hits. I guess what I'm saying is there may be times when I need to stand up for others. And I need to be strong enough to do that.

This is rambling, and I'm about to run out of room so I'll have to hush for now. I think there's another story from this but it will have to wait for another day (or another month, if my recent writing pattern is any indication.)

Maybe I think too much and do too little?

Saturday, February 10, 2018

There's Something I Want to Say

(and this is not it. Not really. I'll have to think more on what it is I really want to say. In the meantime, there is this.)

I'm here to get my once a month post in early.

I've been to Houston for a checkup. My radiology oncologist has bowed out. He says I no longer need him. I liked him a lot so I'll miss seeing him. He always came in and shook our hands then sat down and made eye contact with me while he talked. He was reassuring and matter of fact. On the way home, I thought about how the doctor we see on our cancer journey becomes the favorite one, the one in whom we place our trust. And sometimes, we forget that there is a whole gol-darned team behind that doctor, a team that is helping to make (and keep) us well. I breathed a silent "thank you" to my radiology team. I won't ever know all of their names but nonetheless I am deeply appreciative of their efforts.

I'll still have to see another member of the team because of the medicine I take and the possible side effects. My radiology oncologist told me that people were keeping a good eye on me, with blood tests and CT scans and X-rays. Because it seems like "your body likes to make these things." I suppose I won't fuss about the fact that I'm traveling to Houston one time in each of the first four months of 2018, since they are keeping a good eye on me. I hope after April that I will be able to go less frequently.

I've had my birthday. It's always good to know I made it through another year!

It's Mardi Gras season around here, which means I'll be off for Monday through Wednesday of next week. It's raining now and rain is predicted into next week. I'm not planning on getting out in any of it. Not in this weather.

Things are somewhat depressing around here. It's probably a combination of the weather and the general situation in our country and the world right now. But I've had a couple of reminders this morning that there is still plenty of good in the world and that's the part I want to pay attention to. I want to be one of the good ones, in whatever way I can.

Today would have been my grandmother's I don't know whatieth birthday. I think about her a lot when I am sewing and quilting. 

Well, that's it for now. I can think of nothing else to say. And I have no recent pictures to share.

Sunday, January 28, 2018

Decay All Around

Casualties of winter—the pot may be a goner, but spring will return and maybe the fern will too. It's been such a unusually cold winter this year. I was so happy not to be cold this weekend!


And my prayer flags that I made in July of 2015 are showing their age. Leaving them out to rot is an exercise in letting go, which doesn't come easy for me. It also seems like we/I need prayers like these more than ever.


"Be Well," my hope always, and my prayer for my sister. Hope, that thing with feathers that is often hard to hold. I have to include here friend Cyn's encouragement from the time I posted these when they were brand new, "The assault on hope doesn't mean hope is down. Hope is an evergreen. Hope is your shadow. Hope is a forever friend." That's the kind of thing I need to hear often these days.


"Breathe," "Light," "Love," breathe light and love? Breathe? Be light? Spread love? The cotton is fading and fraying.


"Peace to all who mourn." Over the holidays, I knew of a couple of families who were mourning. May peace come to them. 

The first flag in line is "Joy." Joy might have been the first one I made.

Some have suggested it's time for new flags. I say, "not yet." Let's watch these slowly wither and die. 

I'm so ready for spring to arrive.


Wednesday, January 17, 2018

When You Fall, Get Up and Begin Again

(Warning: This is long, probably boring, and could certainly be classified as navel gazing (at it's finest?)! But I kind of needed to clear up the fog I've been in for the last month or so.) 

The week before we were to be off for Christmas break, I had the flu. I worked two days before I finally admitted to myself that I was sick. Sick enough to see a doctor. I'd had the flu shot and thought I couldn't possibly have the flu. As I now know, that's entirely possible. I missed a day and a half during that week.

On the 15th, the last work day before the break, I was ready and looking forward to quiet times of reflection, reviewing and remembering 2017, and thinking about things I wanted to work toward in 2018.

We left that evening, heading out to our little place in the country. We stayed there until Thursday (the 21st). While I was there, I finished up a table runner I was making for my eldest daughter. She bought her first house last January and she was going to have us over for Christmas Eve gumbo.

This is the front of the table runner. The red border fabric was an estate sale purchase. The strips in the middle came from Tuesday Morning. 

This is the back of the table runner. This is what happens when you don't plan so well and your top ends up being larger than the piece of fabric you wanted to use for your backing. You add a group of strips in the middle (or thereabouts) of the backing fabric and voilĂ , your piece of fabric is now good to go! 

I was able to spend time with my journal and last year's planner, thinking about and writing about the blessings and the foibles of last year. I thought about the things I might like to focus on in the coming year. I made a list of possible words and themes for the year.

I get overwhelmed thinking about goals. I've about decided I'm just not a goal oriented person, and maybe that's okay. For me. I wonder why I write in journals and why I write here. I enjoy it, that's all. I remember once, at work, the faculty had to set measurable goals showing improvement in one of the areas they deal with. One of the professors said something like, "Do we have to be so specific? Can't we just point in the general direction and hope for the best?"  I think that's a "best way" for me to deal with looking ahead and "planning" for the new year.

Anyhoo...I mostly decided that 2017 was an unremarkable year. There were a few things that stood out, a few blips in the road, but mostly, it was unremarkable.

We came home from the country on Thursday afternoon (21st). On Saturday (23rd), the wheels began to fall off. 2017 began to deliver on The Remarkable. My leg began to hurt. I couldn't stand without pain, I couldn't walk without pain, I couldn't sit without pain. I could not even lie flat in the bed without pain. I struggled through that day. Sunday morning (24th), when I tried unsuccessfully three times to walk to the kitchen to fix my coffee and eat a little breakfast, I decided I needed to get myself to a doctor if I didn't want to spend Christmas Eve and/or Christmas in the ER.

I have never been in so much miserable inescapable pain. I called my aunt to ask her to bring me to Urgent Care. She had to stay in the car because she has a compromised immune system and well... flu. I hobbled in and registered. I could not get comfortable. I knew I couldn't sit. So I did my best to get in a corner where I paced and hoped not to call attention to myself. I set my purse down on the floor to get rid of the excess weight. I discovered as I was bending over to set it down that if my left (hurting leg) was up off the ground a bit and my weight was on my right leg, the pain eased up a bit. So I stayed in that position for a bit. When I stood up and looked toward the waiting room, sure enough, there was a young man staring at me with a look of concern and morbid curiosity. Gah. I had become that person you could not not look at.

When they called me in, the lovely doctor decided she couldn't give me a steroid shot because my blood pressure was too high. Well, duh. I was h-u-r-t-i-n-g! I asked if I could sit and try to get it down but she decided she's give me a shot of something else and prescribe a steroid pak. But as she was going out the door, she said, "You're not diabetic, are you?" I told her I was taking medicine and my a1c is well managed and my regular doctor seems to mostly think of it as pre-diabetic but nope, she wasn't buying any of that. So she prescribed a pill you take once daily (and it can take up to two weeks to build up in your system). Can I tell you how helpful that was?

I made the effort and went to my daughter's house for Christmas Eve. I couldn't stay long. I hated that. I visited a bit, ate a little gumbo, and went back home to bed. I was hurting worse on Christmas Day and decided I just couldn't get up and go for Christmas. I've never missed a Christmas Day at my parents' house. It was sad. So Christmas came and went.

At some point after Christmas Day, I called my doctor and she sent out a steroid pak. I also started taking some leftover pain pills I had. They were prescribed to me and I checked with my pharmacist to make sure they were okay to take with my steroid pak. At that point, I was desperate for relief. I didn't quite trust myself to make the wisest choices for myself. Slowly, and I do mean slowly, I began to feel a little better. Meaning I could lie in the bed without involuntarily moaning and groaning in pain.

On New Year's Day, I felt good enough to go down to my parents' house and visit for a bit. Mostly I laid on the couch and they sat around while we talked. I'd get up for a bit and eat a bite, then I'd go back to horizontal. The visit brought me some happiness in spite of the pain.

I had an appointment with my doctor on the 5th. I called to see if I could get in earlier and I was able to go on the 3rd. She did an x-ray of my back and sent me home with two prescriptions. The x-ray showed arthritis in my back, which I already knew I had. She scheduled me for an MRI on the 12th.

In the meantime, work had started again on the 2nd. I was still unable to move much. I worked for a few hours on the 8th because I had paperwork to be done. I had appointments at MD Anderson on the 9th and 10th for a CT scan and checkups. I was walking a little better by then and fortunately I didn't have to do much walking for those two appointments.

The very excellent news from that trip was that my scans were clear and my tumor markers were normal. We visited with another patient while waiting for the CT scan. She and her husband both have cancer. One of them is terminal. But she talked about how people don't understand some of this unless they've been through it (or have helped someone close to them walk through it). Sometimes things start happening, and you can't help but wonder if those things are related to the cancer. I'd wondered for a bit if my leg pain was a sign of something new happening with the cancer. So I was more than usual grateful for the "all clear" news.

And that brought me to a sort of mantra/theme for the coming year: "begin again." I'd been seeing it in various places on the internet and in my reading. I'd gotten off track with my exercise and my eating. So, one of the things I am pointing in the "general direction" of this year is the idea that I can "begin again" to take better care of my body.

I think I worked Thursday (11th) and I came in after my MRI on Friday (12th). Then we had a long weekend for Martin Luther King Day. I laid around and recuperated some more. We were to return on the 16th, but we had a weather closure. I laid around and recuperated some more. We were to return on the 17th (today!), but we had a weather closure. Guess what? I am laying around again and recuperating some more!

The pain is less than what it was but it is still with me. The MRI shows a mild to moderate bulging disc. They are referring me to a pain management specialist. There is an injection that helps some people and not others. He will evaluate my situation to see if that might be helpful for me.

And now I have a few things to say to 2017 and 2018.

2017, seriously? That's the note you chose to leave on? Debilitating and unrelenting pain? Geez. That's how you want to be remembered? You just listen to me. I'm upset now. I'm angry. But I'm going to tell you right here, right now--you are more than pain. You're the year I went to the Houston Quilt Show. You're the year I made it through with all good reports from MDA. You're the year that brought so many good times with family and friends. You're the year I pulled out projects that were over 30 years old and I finished them.You are another year for which I can be grateful. But, good-bye, 2017. And yes, thank you.

2018, seriously? This is the first impression you want to leave on me? This is how you want our relationship to begin? In pain? You're just going to follow in the footsteps of 2017, and deliver up more pain? If 2017 went and jumped off the Calcasieu River Bridge, would you follow mindlessly along and do the same?? Let me tell you something, 2018. We have gotten off to a crappy start. But I'm feeling better. I have stumbled out of 2017 and I have fallen into you, 2018. And I'm feeling grateful. So we're going to grab hands (metaphorically speaking...you don't have hands...I do) and we're going to walk together. We're going to get to know each other and we're going to become dear friends, 2018.

Friday, December 15, 2017

Remembrances

(from our weekend, 12.08.17-12.10.17)
Earlier in the week, a friend mentioned the possibility of snow over the weekend. There was none of the usual hype when there is a possibility of atypical weather events for us. I'd read it was going to snow around midnight (one hour), and again around two a.m. (for about two hours). That was a precise prediction. I doubted we'd see snow. 

My husband's alarm clock went off at 4:30 a.m. (long story). I woke up and told him I was going to the bathroom and then I was going to check to see if it was snowing. It was! I delighted! 
This is the scene that greeted me that morning. And there was more! It snowed. It stuck. We were enveloped in the silence and the brilliance. 
I took the photos below were taken after daylight arrived. I'd forgotten how satisfying it was to walk in crunchy snow. It was hard, leaving my footprints on the pristine ground. I had a little talk with myself, telling myself that the snow was a temporary experience. I admonished myself to enjoy it right now, in the present moment, accepting that it would all melt away. Like life itself. What, you don't have talks like that with yourself?



 

The snow arrived in the early morning of December 8. We were there in the woods to remember my son's death six years ago. The last texts and photos I received from him were about the snow and sharing the snowman he'd built. I still have them on my phone. He was in Pennsylvania at the time. I asked if he'd sent the photos to his sisters. This was the day before he died. I never got an answer. And now, here, six years later, we had snow on the anniversary of his death. 

It felt to me like a gift. I was grateful.