Monday, August 25, 2014

monday

henry seems to have come through his tonsil surgery just fine (with a follow up appointment next week to get the medical opinion on that).  he seems to be sleeping more soundly, (certainly more quietly).  on three occasions he did not wake up upon wetting the bed, though i have no control to compare to, for he was in diapers pre-surgery.  but on two accidentless occasions he has gotten up from his bed and come into our bed, as he did every night pre-surgery, his entire life that he's known how to get from point A to point B in the middle of the night.  this is on the two nights he was not already in our bed as we were instructed to have him in there, in case his mouth started bleeding in the middle of the night.  so... the verdict is out on his quality of sleep, but it's certainly no worse since before the surgery.  and now that he's out of the danger zone, so to speak, he's back to school.

so now it's a quiet house once more.  i'm tempted to turn on 'Jake and the Neverland Pirates' for a little familiar background noise, but i can also easily sing the theme song to myself, in my head (whether i want to or not).  that, favorite of all favorite cartoons, being one of the tricks to keep little H man calm for the past two weeks.  and lots of wooden railroad tracks, and trips to the grocery store in the burley and picking up big brother from school and dropping him off in the mornings on the days greg was in prague for a conference and it was just the three of us. and ice cream of course.  i'll miss the little guy's daytime companionship, but i know he loves 'børnehave' (pre-school) and the very many positive reasons he attends have me satisfied it's the right thing for him.  still, though there are no part-time options at his school (or most børnehaves in denmark, for that matter, so far as i know), i may keep him home on fridays.  it was something i had wanted to do awhile back, after my school schedule changed from mo, th, fri to tue, wed, thurs, and after he started to get older and a bit more willful and challenging in his nursery class, but it feels like not long after that decision was made, i was diagnosed with cancer and life at home became less predictable in so many ways, so the structure of school seemed just the ticket.  as it still does now.  he is a boy who needs structure and predictability and his pre-school class is wonderful at giving this to him (and we at home are getting better at it too, now that life has settled down once again).  something i was able to see in henry with the turnover of visitors (wonderful visitors!) during my treatment, and also again, this summer on our trip to the u.s., going from one house to the next, is that he has difficulties surrounding transitions.  it is certainly one trigger for seeing his more challenging behaviors in full display.  and smaller transitions can do this too, but one-on-one he is nearly always content, so i think fridays at home will be a wonderful plan for us both.

i am also sitting on the fence about something.  i can't decide whether or not to go back to danish classes.  they began two weeks ago, the day of henry's surgery.  to be honest, i don't want to go back, except that i'm not in the habit of not seeing things through to the end (the end, if all runs on schedule, being december).  one of my main hesitations is that my energy level is not what it was, maybe not even what it was during most of my treatment.  i feel like i'm ninety, people!  i'm going to offend some ninety year olds in saying that, and i apologize in advance, as you correctly read between the lines that feeling like i'm ninety is a negative for me.  so it feels precious to me.... my energy, that is.  i have this feeling that i need to guard it and be careful with what i spend it on.  there is a finite amount in any day, in any period of any day.  if i run out of it, which feels like running dead on into a wall, i have to spend anywhere from an hour to a day or two (if i've been a zombie (see below) for too many days) of not doing anything, to get it back.  if i can't stop when i need to stop, maybe because greg is out of town and the boys are home, i feel like a walking zombie.  pushing through water or something thicker (a wall maybe) to get done what i need to get done.  if you do a google search about cancer and fatigue you will see the many articles, including scholarly, written about post-treatment fatigue, and i think this is most certainly what i'm feeling.   here is one description from an abstract (and here's the link)...

Fatigue is a subjective state of overwhelming, sustained exhaustion and decreased capacity for physical and mental work that is not relieved by rest. Cancer-related fatigue has many causes. Included in the causes are the illness itself, the side effects of virtually every treatment, depression, and other biopsychosocial factors. As a result, fatigue is the most common symptom reported by cancer patients in most descriptive studies. In addition to arising from multiple etiologies, fatigue is also multidimensional in its manifestation and impact. Its effect on the quality of life of the patient is comparable to that of pain. Experienced by most patients as an extremely frustrating state of chronic energy depletion, it leads to loss of productivity which can reduce self-esteem. As a subtle and chronic symptom, it also places people at risk for being questioned about the veracity of their complaints, particularly during the post-treatment, disease-free survival period. Patients themselves are reluctant to complain of fatigue, perhaps because they believe little can be done about it, or they wish to avoid drawing attention away from treating their cancer.

i agree in that, long-term, it is not relieved by rest, but certainly in the short-term, i do feel a difference after resting.  i also agree that it's extremely frustrating, though i try to think about the fact that it should get better over time (perhaps on the order of years, but still, no one's saying it's permanent) and that perhaps my kids are little enough that they don't remember a time when i wasn't so consistently tired (i hardly remember that time myself, or at least what it felt like to go an entire day without needing to rest at various points) and by the time they're old enough to compare me with other, more energetic mothers, i will be 'back to normal.'  i also agree that it most certainly leads to loss of productivity as, for example, it took me until this weekend to get all our boxes fully unpacked, that the idea of preparing for, say, a job interview exhausts me, that i have to think hard before (for example) running the vacuum cleaner, as i know it's going to wear me out physically or at least the energy it takes to run a vacuum cleaner will be dutifully docked from my limited supply of energy from whoever's in charge of the tally, and again, what can i afford to spend my energy on?  if i'm vacuuming to clean up before guests come over, will i then have enough energy to visit with and entertain those guests?  and school... i'm supposed to take an oral exam within the next week or two.  i haven't read all the books i'm supposed to read for it and i haven't prepared two topics to talk about... all around i'm not prepared, and it sounds exhausting to me just to imagine getting myself ready for it.  it makes going to school (for which i'd be happy to get the forced exercise three days a week) seem almost not realistic right now.  silly, i know, because so many people go through all of this cancer treatment and have full-time, mentally or physically demanding jobs.  it seems sort of wimpy for me to say i can't attend class a few days a week or sit for some silly exam... and i suppose that's where some of those reduced self-esteem feelings could come from.  because i do feel like, i should be able to do this, i should push through, i shouldn't give up on activities because people are going to say (and i'm going to say to myself): a) that's the complete opposite of what you should be doing to get your life back on track and to get rid of the fatigue, didn't you see all those articles about exercise???; and b) what are you doing then, and what are you going to do in its place, because you have to do something, you can't just not do something; and c) you want to talk about tired?  let me tell you all the things i do in a day while you're sitting around and then we can talk about tired.  (okay, i can't say that last one to myself.)  i know, i know people, we are all tired.  you, maybe more than me, me maybe more than you, you, maybe for better reasons than me, me maybe for better reasons than you, but the point is the same: if tired ruled the world nothing would get done.  yes, i see that, and i want to get back into that boat that rows on in spite of tired, but frankly it's moving too fast for me right now and i have to listen to my body telling me to take it easy for a little while and because i'm able to choose the other boat right now, you know, the one where everyone's dropped their oars in the water because they're so tired, that's what i'm going to do.  and it's not like a car suddenly appeared in the parking lot with our names on it.  it's not like i'm not going to be using my two legs to pedal me around for drop-offs and pick-ups and appointments and hauling groceries and whatever else (for a 90 year old, i'm doing pretty well).  it's just that these are the honest to goodness feelings i have that you probably wouldn't have in my case because you are able to analyze things with a clear head.  it's just language class.  i need to just get over the dilemma of it all.  i really feel like i need to focus on making myself better now and yes, maybe not giving up on activities and biking across town three days a week is one way to do that, but it's surely not the only way.  i don't know the answer but i also know i have to stop worrying so much about getting it right.  so... decision made.  i'm not going back to language classes, at least for now.  okay, phew! that feels better!

well, this has turned into a long pictureless blog post.  if you've stayed to the end, perhaps i can find a picture or two for you.


in the rain...


on the bus...


right before the first day of school.  the tie actually stayed behind, unfortunately.  his choice.


shaking the principal's hand and getting his flag...


the 0 grade class...


at his desk...


just some well manicured apple trees i like to admire along a bike path...


henry's surgery day...




on the bmx course...


climbing...


greg...


more climbing, more colors...


even more colors...


and then double the colors...


after a little redecorating... almost makes the orange couch look bearable...


the kitchen...


that's all for now!

3 comments:

nina said...

To do something at your own speed is a wonderful thing. Be it learning a language, writing a book, keeping a blog. Go with wonderful.

Phyllis Noble said...

296Three cheers for a good decision! You're at the helm here. Love those photos, especially the one of William at his desk, a bunch of roses still all wrapped up, and.... oh, wow .... a window right next to his desk! I love the photo of William receiving the flag from the principal, and wondered what William was saying at that moment. In Danish. This is a child who is so very well loved. Both of your kids are, and THAT'S what's important.

Sara said...

Sending this on to my daughter, Jenni who will understand fatigue after contracting typhoid fever in Ecuador this summer. She'll understand what you say about deciding how to use your energy knowing it is limited. Do what's right for you and damn the shoulds.

Sara