The cancer goalposts have moved (again).

Monday, August 25, 2014

The cancer goalposts have moved on A again.  Or, maybe we weren't ever seeing them correctly.  Either way, it doesn't matter.  We thought he would finish his chemo in October and he could then have hip surgery.  It turns out we were wrong about that and he won't finish until April.  He handled this news the way he handles everything, like a champ.  He didn't even seem to flinch as he told me.  It's horrible news because he is in so much pain everyday and it means six more months of chemo, six more months until we can fix the pain.  But, he just takes things with a straight face and keeps going.

We have stopped thinking too much about cancer most of the time.  The PICC line is there constantly--no love, you can't do the ice bucket part of the ALS challenge for the same reasons you haven't been able to take a normal shower in almost two years or enjoy the hot tub on our roof.  There's the one day per week that he's in the hospital and it messes up his work schedule.  The day each week he takes his chemo pills.  The day each month he gets IV chemo.  And the constant pain in his hips.  It's a big pain.  "I'm surprised you walked in here based on your x-rays," his doctor commented.  "Can we get you a prescription for crutches?"  "I'd honestly put you in a wheelchair, but I don't want your muscles to atrophy."  He keeps walking.  He helped our friends move our of their apartment, carrying furniture up and down flights of stairs.  You should be in a wheelchair.  Well, should is a complex word.

He has such a strong desire to make his life about living that all of that fades into the background as just parts of the new normal.  Because we don't spend too much of our time on cancer, though, sometimes it's hard to take the news that it isn't over, isn't ending soon.  We have been doing this almost two years now and since A is much better than when he was diagnosed it just seems over.  It's easy to forget how important all the treatment is, that we aren't really out of the woods.  I guess we just want to be and so we mostly act like we are.  Honestly, it's the only way to have a life.

There's nothing to do about the news.  I don't know if A had a moment where he broke down.  He didn't do it with me.  And I didn't do it with him.  I went to bed that night and I didn't even realize how much my heart had broken for him.  The next morning I woke up early to meet a friend for a run.  I opened the door to our apartment and walked to my car and then began crying out of nowhere.  I cried the seven-minute drive to the park, dried my tears and started stretching while waiting for my friend.  As I'm crying I'm a little surprised but this has also become a routine.  Sometimes as a kid, I would think about lots of sad things and then I'd cry.  Now, I've found I do this thing.  I cry without thinking.  There are tears, but my brain doesn't even process what it is.  I hear news, smile and look on the bright side for A, cry as soon as I leave the apartment and never really even process why.  It is how it is.  Part of me wonders if it's unhealthy to grieve separately, but at the same time, it's not tons of grief and it makes A really sad when he knows that I'm sad.  I don't think this way of coping hurts our relationship, especially when there is nothing we can do to improve the situation.  This is just how it is.

All I can do is give extra hugs, extra love, try to make life so pleasant that it's still wonderful and happy even in all the pain.  So, that's where we are.  Mostly that is a very satisfying and happy place.  Apparently we will be here a bit longer.

5 changes toward a lower A1c

Tuesday, August 19, 2014

I wrote here that I recently dropped my A1c to 6.3.  I promised I'd reflect and try to figure out how that happened.  It took me a little bit longer than I had expected, but I have definitely made some consistent changes in how I live my life and manage my diabetes.  Here are my top-five changes:

1. Exercise Consistently:  I had always picked up the occasional yoga class, indulged in the occasional personal training session, and trained haphazardly for 5ks.  That probably had some sporadically helpful effects on my bloodsugar, but I've noticed that consistency really seals the deal with exercise and bloodsugar.

First, consistency allows you to adjust for the weird bloodsugar results.  One yoga class drops my bloodsugar, another raises it, figuring out how to best mitigate those changes is both luck and repeat experience.  I've learned, for example, that eating a semi-serious snack three-four hours before a run provides for the best running experience and it doesn't matter too much what it is, as long as it involves some protein.  For some reason, a baked potato twenty-thirty minutes before a run will work well without many complications.  If I'm desperate and haven't thought ahead, a Gatorade will spike me enough to make it through the workout, but spells disastrous highs on the flipside.  Glucose tabs, orange juice, and Elovate to raise bloodsugar before the workout and I can expect to stay low and stop the workout early even if I dump lots of extra sugar into my body.  Why are they so different than Gatorade?  I have no idea.  This is just how it goes.

Second, I swear there is something else going on inside my body when the exercise is consistent.  It seems like the exercise is to bloodsugar control as the ocean is to temperature.  When I'm consistently exercising my body seems to tolerate and moderate changes better.  When I skip a few days, things become erratic.

2. Do something that feels good:  I recently added a yin yoga class that just felt good.  I added it into my schedule just for myself and not to achieve any specific goal.  I'm not sure whether this yin class really does anything that is super helpful in terms of building muscle or stretching out the connective tissue, but it seems to make a difference in my vitality.

3. Use a CGM: You can't beat wearing a cgm consistently.  First, you learn a lot about how your body responds to different things and when.  This allows you to understand better what action is causing a particular bloodsugar response and to take that into account.  For example, I really did not realize what killers rice and sushi are.  I don't eat them anymore.  Before wearing a CGM, I didn't fully make the connection and understand exactly how much havoc those foods wreak.  Second, you can respond quickly when you're entering a high or low crisis.  Third, you don't have to take as many compensatory actions to prop your bloodsugar up before doing things like going to sleep or exercising.  The CGM is a fabulous tool and it's saved many lives.

The downside is the cost and the added stress of trying to make it all work out.  Unfortunately, I haven't had any sensors for awhile as I have run out during the past month, which has mostly been spent fighting with Medtronic and my two insurance companies over ~$4,000 in medical bills that I actually don't owe.  But, I did have a consistent supply of the sensors during few months leading up to the measurement of my A1c.  I placed a fourth phone call to Medtronic today regarding the order and the amount of time it was taking to process my we'll see if they actually are able to get things expedited or if we will continue to wait in a bundle of red tape.

4. Lower carbs.: Technically, you can eat whatever you want as long as you take insulin to cover it.  But, the law of large numbers applies to diabetes management and insulin dosing.  The more carbs you're eating, the more you're considering bolusing and the more opportunity you have to mess up.  It isn't that  low carb diet is necessarily healthier for a type-one diabetic, it's that the human error in guessing how the carbs will affect your bloodsugar is greatly reduced when the carbs are reduced.  For this reason, I have primarily switched to a low carb diet and I think that is part of what has helped me achieve better control.

5. Reduce stress: No law school, little in the way of cancer treatment, no bar exam, no starting a new job, no moving to a new city...stress is the rocketship to the planet of unpredictable highs.  I think it's highly possible that getting more parts of my life working and under control made most of the difference.  It's amazing how intertwined our body is and how much everything affects your physical health.  I'm pretty convinced that almost anything you can do to reduce stress (except, obviously, things like giving up on fighting with insurance companies) is worth its weight in gold in terms of health benefits.

7-minute scientific workout

I've seen a lot of buzz about the the scientific seven-minute workout published by the NYTimes last year.  I'm not sure that you can get all the stress benefits/endorphin benefits from such a short workout that you do from a much longer one, but if you've got only seven minutes, this workout will at least give you a little burn!

Clean Eating Peanut Butter Pie

Monday, August 18, 2014

We had a wonderful weekend.  Saturday involved cleaning and errands and I managed to sneak in a hot yoga class.  A took my younger cousins to a metal concert in the evening while my grandma and I shopped the Antonio Melani sale.

Sunday, I got in a 2-mile run.  That sounds wimpy, but it was 97 degrees and it was sufficient to basically keep me on track in training to complete a half-marathon.  I recently set a goal to train/complete a half.  This sounds a little insane to me and I'll detail all that in another entry, but I figure, why not try and if it becomes too difficult, I'll quit then rather than deciding to never try.

In the evening we had some friends over for dinner, which gave me a chance to try out a few new recipes.  All of them turned out pretty well, but this almost-clean-eating peanut butter pie was the clear winner just because of how amazing it tastes without being horrible for your health.  The recipe is from IFOODREAL, here.  The blog includes a fully clean peanut butter pie, which means that the crust is clean as well.  I did not have time to make the clean-eating crust, so I substituted a graham cracker crust.  The only ingredients in the filling are three ripe bananas, blended with a cup of peanut butter, and a tiny bit of vanilla extract.  Toss 'em in the blender, dump into the pie filling, pile on some chocolate chips and set it in the freezer.  This pie has a crust, peanut butter, and chocolate chips, so it isn't healthy, but it tastes just like any decadent peanut butter mousse.  It satisfies that type of rich craving and it way healthier than that type of dessert.

Org Series #7: Sink Organizer

Saturday, August 16, 2014

I'd been wanting a sink organizer for awhile.  Since I already have my ring holder, hand soap and dish soap sitting on the counter around the top of the sink, leaving the sponges, and hard dish brush laying around left the sink area looking constantly cluttered even when it was clean.

This sink organizer is the first organizing purchase that I thought wasn't going to work.  I would attach it to the side of the sink and it would fall down an hour or two later.  Defeated, I was just setting the container on the counter next to the sink.  Then, my mom came to visit, applied water to the suction cups and they haven't fallen in weeks.  Fabulous.

Good Grips Aluminum Sink Basket.  View it here.

Wellness Wednesday: Gimme a break

Wednesday, August 13, 2014

More and more articles have been popping up recently touting the necessity and benefits of mental breaks, napping, daydreaming, mental wandering and the like.  I approached these articles skeptically.  Few things have amazed me as much as our efforts to justify the healthiness of our worst habits.  Maybe drinking wine and beer really is healthy.  Maybe coffee is healthy.  Maybe being slightly overweight really is healthy.  Or, maybe, people will later find that, really, we just wanted these things to be healthy so we kept looking and looking for some sort of health benefit until we designed the right study and found one.

But, all of these break articles seem to make some sense.

Your brain is a series of circuits and neurons and information flows between these circuits.  But, your brain has limited capacity and limited attention.  And there is a lot of competition for that capacity, and particularly the attention.  Everything that is on your to-do list that you haven't yet accomplished is taking up some space, the space where you're conscious of it, stressed about it, know that you need to take care of it.  It's so hard to not respond to an e-mail sitting in your inbox if you know it's there and you need to respond.  This is why some people spend most of their work day responding to e-mails.  It's harder to focus until you clear out everything else.

To maximize your attention, the advice is to segment out your day.  Set aside time for social networking.  Set aside time for e-mailing.  Set aside time for exercising, time for cooking.  And build in mental breaks where you allow yourself to daydream, allow your mind to wander.  It's during those breaks that we discover creative solutions to our problems.

Cancer treatment: when doctors don't pick a course

Tuesday, August 12, 2014

We had spent the day peering out at the snow on the ground from the 7th floor hospital window.  I had been watching the flakes drop and calculating whether or not I would be able to drive home or whether I'd be stuck in again that night.  I spent a lot of time contemplating whether I could really request to "work remotely" another day in a row.  And yet, all I really felt like doing was crawling into a ball on the couch beside A's bed and just freezing myself there in place until his cancer treatment ended.

There were weeks where my entire body felt like lead.  It wasn't just the cancer.  It was the responsibility.  Our doctor had given us a choice between a bone-marrow transplant and continuing our chemo course.  He would not advise one way or the other.  If a bone-marrow transplant is successful, the leukemia will not come back, but it may not be successful and you'll be stuck with transplant complications.  Transplant complications give you about the same odds of surviving that you have with leukemia, etc. etc.

"What would you do?" we asked our doctor, the person with a medical degree.  He couldn't say, he was just explaining the options.  "I brought your case up during the transplant team meeting and the team was evenly split," our doctor explained.  As an afterthought, he added, "But, the hospital makes a lot more money doing transplants than just regular chemo."  There's some brutal honesty.

I spent nights reading the Journal of Hematology and Oncology, scouring past issues for outcomes in transplants as opposed to A's chemo regimen.

There was recently a good article in the NYT about the treatment choices one has to make when dealing with cancer and how the patient empowerment movement often leads to doctors who hesitate to give any sort of advice.  I sympathize with the writer's concerns.  Maybe doctors should have a recommendation.  How do you expect a stressed out patient to acquire the medical knowledge to make an informed treatment decision.

I was complaining about the lack of direction to another patient who had our same doctor and had just completed his transplant.  "Yes," the other patient said, "But, you know he's being sued, right?  He told a former patient, who had no other treatment option, to elect a transplant.  That patient were to a hospital in Minnesota, he didn't have the transplant here even.  He died during the transplant and the parents are suing, saying that Dr. A didn't inform them that transplants sometimes cause death."

Of course the transplants can cause death.  And in the case of the individual filing the lawsuit, that particular individual had a type of leukemia that will kill you without transplant.  Everybody transplants.

I thought of the lawsuit, the responsibility, and Dr. A the next night as I was pouring over the literature.  Maybe the decision is just about luck and the doctor can't take responsibility for making a random guess.  We elected not to transplant and I think that was smart.

I hope I never have to take responsibility for hearing that it wasn't.

Family Weekend

Sunday, August 10, 2014

Growing up in Nebraska, I had my small nuclear family, my parents and two sisters, but no extended relatives nearby.  We traveled every so often, but I never felt like a part of a big family.  Moving to Texas, where my mother's home fires burn has been an experience.  It first it felt a little odd to be around all these extended relatives who knew each other well, but the thing about family is that they tend to just accept you even if you're a virtual stranger.  Now, here we are, in the middle of a huge family.  My grandmother was one of six children (all still alive and nearby) and my mother was one of four.  On my mom's side, I have five first cousins in addition to my two sisters and then there are various aunts and uncles as well as second-cousins and first-cousins-once-removed.  I'm not entirely sure how I am related to everyone, I just know who they are.

After A and I moved to Houston, my sister decided to attend graduate school in Austin and one of my cousins from Florida decided to move to Houston for a few months.  I am the oldest cousin and there's a bit of an age gap, but the flurry of activity related to all the new Texas residents has just been plain fun.

This past weekend, my aunt had a birthday and we celebrated out at my grandpa's farm under the stars.  Few things feel as wonderful as being out of the city, with family, grilling out or chucking watermelon rinds over the fence.

There is something about being able to get away, outside of the city.  I don't know exactly what it is, but it almost feels like all the extra space takes away my stress and stretches it out so that it's thin enough to dissolve away.  There is something about being outside, outside of the city, staring up at the moon and the stars.  Something about being able to see so much more of the universe shrinks all the mental clutter and clears out my brain.

And then there is something that feels secure and fun in doing simple things with family.

I'm trying to savor it all.

Org Series #6: OXO Containers

Saturday, August 9, 2014

Credit for these OXO Containers actually goes to A.  He first asked for some for Christmas.  Then, we registered for more for our wedding.  One friend, who purchased a few for us informed that she got us the best thing on our registry.  We have now developed a little colony of containers and I have come to love them.

I think the best thing about these containers is that they allow you to store food right on your counter and somehow it almost looks decorative.  The tops are so easy (and kinda fun) to open.  They're BPA-free.  They stack.  They look wonderful.  We use them in kitchen and in the bathroom linen closet to store our medical supplies.  Even my ugly diabetes supplies look kind of cute in these containers.  And an added plus about using them for medical supplies - - since they're clear, I can always easily see when I'm running low.

In the kitchen, though, these containers are one more great way to store food in our tight kitchen.  We'll probably keep expanding our set over time, freeing up more space in our scary-crowded pantry.

Getting it together--soon

Thursday, August 7, 2014

This week has been a little bit crazy and so I haven't quite had the time to really sit down and think, let alone type words onto my computer screen.  The crazy thing is, I'm not really sure why this week has felt so busy.  We are in a very busy time period at work--I've been thinking so much I've felt exhausted by noon most days.  But, I think I'm mostly tired because I have something going on in my body that I can't figure out.  It's nothing big, just my right ear has been clogged for almost two weeks now, some congestion, and I feel tired.  I'm not tired in the sleepy sense so much, although I have been sleeping really well, but more in the sense of being out of breath after walking up one set of stairs--embarrassing!  Despite that, I've still managed to keep working out, so who knows.  In any event, I am hoping to get it together soon.

Weekend Update

Sunday, August 3, 2014

I've started writing down goals for my weekend and collaborating with A about it.  Yesterday, we sat down and breakfast and talked a little bit to make sure we're on the same page.  The joint collaborating was actually really helpful.  It allowed to split up chores and A even knocked off one of my to-do list items by putting gas in my car while he was doing something else.  Talking about everything also allowed me to get a sense of how A wanted to feel when the weekend ended.  He wanted "low-key" other than a planned Shakespeare outing. 

Things went well yesterday.  I got the laundry started, the kitchen cleaned, meals for the week planned, a picnic packed for the evening and I made it to hot yoga.

A & I organized a group outing to the Houston Shakespeare Festival at the Miller Outdoor Theater that turned out to be lots of fun.  Don't judge by this horrible picture that one of our group made a valiant effort to take right before they reminded us, no photos (although I'm sure they really meant no photos of the play).

But, after listening a lot to Colbie Caillat's "What Means the Most to Me,"  I've been refocusing on what I love most.  And it isn't finishing everything on my chore list.  Particularly on weekends, I'm up a few hours before A.  This weekend I've been climbing back in to lay around a little with A while he wakes up.  Over time, I won't remember all the unchecked items that come from taking some real time just to be together.  Some things are worth it. 

Org Series #5: Mounted paper-towel-holder

Saturday, August 2, 2014

Sometimes it's the small things and that's particularly true in a small kitchen.  We were able to get our paper-towel-roll off our small amount of counter space by mounting it above the sink.  In our apartment, every inch of counter space is sacred.

We bought this mounted paper-towel-holder from The Container Store.  We did have to drill two holes into the wall to install it, but it was still a fairly simple task using A's power drill.

Does anyone else have any small tricks that give you that extra inch of space in the kitchen?  We are always looking for more ideas!