Sunday, August 30, 2015


We have been home for five weeks and in that time started school and moved DS1 up to his campus.  It doesn't seem like enough time to establish a routine, but we getting there.  This last week was odd, not having him around, but we're getting used to it.

Mom seems fairly stable this week.  Issues that were plaguing her last week seem to have resolved. Specifically, she had huge bruises up and down her arms from scratching too hard, but the diligence of my siblings in keeping her from scratching and putting lotion on her have helped enormously.  I talk to her every day, and some days we even can have a conversation.  Yesterday was not one of those days.  She couldn't hear a word I said, even though I was literally shouting into the phone.  It's hard.  One of my brothers told me how, from week to week, he notices little things, like she's having a harder time finding the right word (like saying"red berries" instead of cherry tomatoes).  And one of my sisters told me how, for a very short time, Mom seemed like a completely different (and very aggressive) person.  It's all expected but that doesn't make it any easier.

I still don't know what I'm doing for my own diagnostics this fall.  Just yesterday and continuing today I have what I think is muscle pain under my right ear.  (I just put a heat pack on it and it felt good, but as soon as I took off the heat, the pain came back.)  I have been doing my physical therapy stretches religiously, but the tension in my right neck never seems to resolve.  This new pain is different from just the usual muscle tension, which only hurts when I turn my head the wrong way.  This hurts all the time, enough to distract me.

On Wednesday I left school to go pick up the kids, thinking that my grad class was starting that day. (It didn't, that's this week.)  I was texting DD to be please be ready when I felt what I can only describe as a little "pop!" and then felt drainage down the back of my throat.  It tasted a little salty, and I thought, is that mucus, or it it blood? Question answered when blood started dripping from my nose.  Fortunately there is a new ER literally two blocks away from my school, so I pulled in there. The waiting room was empty, so they took my right away.  The doctor gave me a nasal spray that has a vasal constrictor in it, and eventually the bleeding stopped.  He thinks a small blood vessel broke. (My blood pressure was slightly higher than it usually is, but nothing to be alarmed about.)   And he wants me to see my ENT, but my ENT was on vacation last week and the earliest I can get to see him is September 20. I did not book the appointment, mainly because I don't want to have to deal with this.

Still, every time I go out into the heat I worry about it happening again.  My car was super hot that day, and I wonder if that had anything to do with it.  So far it has been OK, I just want it to stay that way.

I'm mostly dug out from the huge amount of grading I had to do.  Now I just have to get my file system set up and all the papers I've collected (not that many, really), filed.  Of course both 7th and 8th grades are having another test this week, so just as I clear the deck of grading, a new pile will arrive!  Oh, and I have 25 pages of reading to do before Wednesday, but I think I should be able to manage that.

Had dinner with all the kids at a nice Italian place last night after mass.  It was great having everyone together again, but the time went way too quickly!

14, 16, 18. 

Sunday, August 16, 2015

nuclear family

We're down to four, at least during the semester.

DS1's check-in time was 7:30-8AM, so we got up ungodly early, loaded up the van, and took him to Glendale.  The process was extremely well-organized and staffed by an abundance (perhaps an over-abundance) of enthusiastic young people, there to help with directions, advice, and general good will. I spent a great deal of time patching his backpack, which he has had since first or second grade and won't give up.  He may not have brought a stuffed animal, but he has his security backpack!

He didn't bring much past the necessities, since we're so close.  Thought he'd take the time to figure out what he really wants and then we'll (he'll) get it.  His roommate, a nice guy from San Diego, was the opposite, so their respective ends of the room could not look less alike.  DS1 doesn't even have a hanger in his closet because all the clothes he brought are the folded, in-the-drawer kind.  (DH was surprised by the idea that he would go to class in gym shorts.  "When did college students become slobs?"  He doesn't realize that high school students will go to school in pajamas if they're allowed.  Gym shorts are actually clothing meant to be worn outside the bedroom, so they're OK.)

It's very strange having my boy not here and not just out at a friend's, but really not-here, as in, I don't know when I'm going to see him again.  I'd like to talk to him but I don't want to be a pest.  Eventually I will get over that and send a text telling him I'd like to catch up on how things are going... that would probably be OK.

Mom's condition continues to deteriorate.  School, grad school, upcoming medical tests are all just background noise right now.  I'm managing.

Saturday, August 15, 2015

everything looks different from here

We arrived home from Massachusetts just three weeks ago.  It's the weirdest thing, this feeling that everything is completely different while at the same time feeling exactly the same.

Teaching is going spectacularly, unexpectedly well, although this week I have a huge amount of grading to do, and I'm behind in getting my file system set up.  I have nearly 200 students (!!!) this year, and consequently I'm not cutting anyone any slack.  Fortunately the 7th grade cohort is really outstanding -- they just completed their first lab and were very well behaved.  I do have to read their lab worksheets and grade them to know how well they did, but I have the feeling they did they well.

It's odd to have some energy left at the end of the day.  I'd be happier if I hadn't come down with a cold last weekend, but taking quercetin seems to be helping me recover faster than usual.  It's nearly gone and it hasn't even been a week a yet.

Back in Massachusetts, Mom's condition is deteriorating.  I call every day but we only talk for a few minutes.  I try to tell her about what's going on here, but I don't know how much she can hear.  She never tells me how she's really feeling.  Texts from my siblings tell (and show) the bruises she has from scratching herself and the breakdown of her systems, and I hear about the pain that started yesterday and took far too long to get under control.  There is literally nothing I can do.  I call, I text.  I talk on the phone.  I'm not there and I want to be, but that's the way it has to be for now.

DS1 is going to college in about 5 hours.  We'll load up the van and drive him up to the west campus and help him move in and, I suppose, leave.  I'm going to miss him so.  I don't know if I'm worried about him or not.  I think he'll be OK, but he is a bit absent-minded-professor-y.  He will find his own way, though, I know it.  In a last-ditch fit of nostalgia, I took the three kids to Barnes & Noble after school today. It felt right, all driving over together and getting a snack in the cafe.  It made for a nice low-key send-off, because neither sibling will be around when we leave early Saturday morning.

My shoulder has been giving me trouble on and off (using the mousepad on this laptop for any length of time is sure to trigger pain), but it is much better since I've been consistent with the physical therapy exercises, and it's not disturbing my sleep anymore.  So I'm more or less nonchalant about scheduling my followup testing (I did do the vision field test - all clear!).  Dr S, the surgeon at our local MD Anderson wants me to do a CT, but Dr. B my endo wants me to have a whole body scan.  I talked to Dr. S's assistant and asked her if the doctors could confer and she said no, it would have to be my call.  This did not sit well with me.  I even called and talked to the BC/BS nurse on-call about it, who told me I should talk to Dr B and see, because if the WBS is positive, wouldn't she order a CT anyway?   This situation was nagging at me until today when I had a chance to talk to Y at the hospital, and she looked at my chart and said they recommended PET/CT followup, not a whole body scan, but she would have the nuc med doctor review my chart and decide what I should have for followup, and then discuss it with Dr B.  I'm glad that conversation is taking place at the doctor level and not with me, because I really don't feel qualified to make this decision.

I'm in no hurry to get treatment anyway.  I need the Mom situation to resolve (lovely euphemism there) and I'm teaching and I'm working on my Master's degree.  I'm sort of flying by the seat of my pants on the non-thesis project, but that's OK because I'll spend next semester writing it up after it has actually been implemented. I had a phone meeting with my adviser at NAU and we tentatively planned for me to graduate at the end of next summer.  If all goes reasonably well, it should be doable.

I'm aware that this is an extraordinary time, kind of a bubble.  Many things that would have me fretting in the past are eliciting little more than a shrug and the acknowledgement that they'll get done eventually.  So far no one seems to even notice that anything is different, even though I feel about one-tenth as engaged in planning and preparation as I normally am.  Since it's my third year, I'm confident that I can do this job and I'm not (yet) having any problems moving the students through the curriculum.  I have about another week and a half before my NAU class starts up, and it is only one class, a literature review.  It's on Wednesday, which remains piano lesson night, so the schedule will be easier this semester since only one evening a week will be weird. Except I just remembered that I have staff meetings every other Wednesday so I will have to plan for that or else I'll be late for class every other week!  That's a perfect example of how my thinking is, these days.  Obvious problems are not so obvious to me.

I still need to plan my research/stewardship project to finish my summer course...

In these past few weeks I have seen how much having a drink or two helps me feel, not exactly better, just... less compressed at the end of the day.  I can see how it could become a habit, and then a problem.  Just the fact that I'm thinking about it in these terms helps reassure me that won't happen, but it's not something I can be complacent about, especially given how much I like a good bourbon.

Friday, July 17, 2015

home, finally

Crazy week -- I had my "teachers on the estuary" class at Waquoit Bay, and it was awesome.  But that meant that I was in class from 9am - 5pm Monday-Wednesday (well, Monday had a 10am start), and until 3pm Thursday.  It was awesome that the class was just up at the research reserve, which is literally a 3 minute drive from Mom's house, but being occupied for 8 hours each day meant that my time to visit Mom was limited to the evenings.

So after school I'd visit with her for a couple of hours, and then have a late dinner with the kids.  We have necessarily been doing a lot of eating out: British Beer Company at Falmouth Heights is great for dinner, because we can park in the Heights Beach parking lot.  On Tuesday, Bastille Day, we had a fabulous dinner at Bleu in Mashpee.  Wednesday the kids settled for pizza from Pizza 1 Subs 2, but that's not exactly settling.  

Wednesday, I called the nursing center to speak to the nurse practitioner to hear how Mom's re-evaluation went, and learned that they were set to discharge her on Thursday!  When we met with the hospice representative, the date was set -- that was not clear to me, and necessitated a flurry of phone calls and furniture moving and what-not, but I managed to get everything straightened out.   Very late that night my brother and his family arrived from Louisiana, and that helped because they were here to receive delivery of the hospital bed and wheel chair on Thursday morning.  

One of my Boston-based brothers came down with his wife Thursday morning and oversaw the discharge process, which was awesome because I got to attend my last day of class (only a half-hour late because of phone calls and logistics). The hospice sent the intake nurse to look over Mom and treat anything (like bandaging her heel), and they sent her home with her current medications.  Today her nurse manager will be by and we will discuss which medications to continue and which to drop.  Yesterday her blood pressure was the rather alarming 110/104, even on 2 different blood pressure medications.  Now I understand her headaches!

Mom enjoyed eating a big cream-filled donut from Dunkin' when she first got home, and later she enjoyed having crab rangoon from her favorite Chinese restaurant.  She had more calories yesterday than she had had in the previous three days, and she was obviously happy to be home.  She stayed in her wheelchair until about 7:45pm when she was falling asleep, so we moved her into the bed, and she has been sleeping ever since - 12 hours now, with a bit of wakefulness about 11pm when I gave her her night medication.  The hospice sent a variable-pressure bed which inflates and deflates to help prevent pressure sores.

I'm a bit at a loss as to how we're going to manage -- my brother helped me get Mom onto the commode, and then to transfer her from the wheelchair to the bed.  She has some strength now but that will fail quickly.  She hasn't attempted walking since Monday, and her knees would not hold.  Toileting if only one person is here to help will not work, and I do not know how some of my siblings will feel about changing her incontinence briefs.  The hospice intake nurse said home health aides are scheduled for 3 times a week for an hour each time, but that will be for bathing.  I'm not sure how often skilled nursing will be assigned; we'll find out today when her nurse manager comes by. 

In the meantime, the kids are very much enjoying being together again, and last night we all played cards together for hours.  Mom is sleeping in the living room but did not mind the commotion, most likely because she couldn't hear it. Yesterday, she seemed better, but I think that was the psychological effect of coming home and having everyone here.  We'll have to take it day by day.   

Wednesday, July 15, 2015

roller coaster

Mom was dreadfully sick over the weekend, with near continuous nausea and various pains.  She ate about 10 bites of food total over Saturday and Sunday.  Yesterday was a little better, and today better still - she ate about half a cup of cottage cheese and some fruit cocktail at supper, and it was the most I'd seen her eat in days.  But she couldn't walk yesterday, her knees kept giving out, and she says they didn't ask her to walk in p.t. today.  It's hard to know whether or not to trust her memory -- sometimes she's spot on, other times she's mixing up the days or just forgetting things entirely.  Her somewhat confused state has become the new normal and is not as disturbing to me now, but I do miss my old sharp Mom.

Her refrain, especially when she's feeling, as she says, "Lousy," is "I can't understand how I ended up in this place," so I remind her about not being able to walk and going to the hospital.  But I think she remembers the talk we had before she went to the hospital, and this whole month in rehab was really not supposed to happen.  But here we are, and at least these last couple of days have seemed better -- or at least she has put on a good front when I've visited in the evenings.

I suspect she is rallying because my brother is coming in from LA with his family late Wednesday.  I can't imagine that this upward trend is going to last.

I'm up very late because I took about a 2 hour nap while the kids watched Jaws after a spectacular Bastille Day dinner at Bleu in Mashpee.  So I'm not that tired, and I'm stressed, and I don't want to go to bed.

This wouldn't be a problem except that I have class in the morning at 9AM.  My first two days have been wonderful.  One of the best things is getting to spend time with other science teachers.  Professional development sessions during the school year are just too short, and my NAU classes are great but free discussion time is necessarily limited.  It's awesome spending time with so many other people with similar interests and issues.

I can't even list all the things I've learned about -- even how to canoe, even though I did not paddle, I would like to try if we go out again.  I find myself afraid of physical challenges much more than I used to be, and I don't know if it's because I'm chronically sleep-deprived, stressed because of Mom, or just getting older so I can't mask the fears I've always felt as well as I could, but I don't like it!

Anyway, I've got more sun in the past 2 days than I have in years.  At this rate I'll be going back to AZ with an actual tan, along with a stack of work that I have no idea when I'm going to be able to clear.  I'm stalled on my science project work but I'm hoping to get some of it done next week, because the week after -- it's back to AZ, and back to school!

Tuesday, July 07, 2015

on the way

The rest of our time in Connecticut passed as wonderfully as those first few days.  We went to Mystic - 10 years after our first trip there!  And we saw the patriotic concert and fireworks at Talcott Mountain, with over 10,000 other people enjoying the spectacular weather.  Saturday we lazed about most of the day, went to Mass, and headed to the Cape in the early evening.

That turned out to be a fantastic choice, since we had zero traffic, and crossing the Bourne Bridge we saw a string of fireworks displays strung out along the coast.

Sunday I took the family to visit Mom at the rehab, and they played a little concert for her on the grand piano in the dining room. My sister came for her usual Sunday visit, too.  Mom loved it.  She seemed well, and enjoyed the time we sat outside with her, admiring the flowers.

Monday was not as good a day.  She told me she felt like crying all the time, and when I asked her why, she said it was because she felt sick to her stomach. Her head aches, too.  The nurse practitioner was in, and said she was starting an antibiotic for a UTI.  I asked for medicine for the nausea, and they wrote her a new prescription.

Today was Mom's care meeting.  My two sisters came down, and the boys called in on a conference call.  Mom has made some progress but she is approaching the limit imposed by her many medical conditions.  The clear outcome of the meeting is that while Mom can recognize that she needs help, she cannot identify what to do to get it. She is not capable of making decisions for herself.

So all of us, her seven children, have to decide for her.  Her GFR (kidney function) is down to 10.  Her nausea and lack of appetite are consistent with kidney failure, and the anti-nausea meds don't work consistently.  Off the steroids, her femoral nerve pain has returned.

The next step is to have a meeting with a provider of hospice services to determine what must be done, and I'll request that tomorrow.  

I went to see Mom again this evening, and she was shivering in her bed.  I helped her into her fleece jacket and that seemed to help, and then I propped her leg up on a pillow.  She was cozy and as comfortable as I could make her, but she had a very difficult day.  I still just want her to be comfortable, pain-free, and well cared for.  We're getting there.

Tuesday, June 30, 2015

CT with the family

Saturday DH flew in with the kids.  They came into Logan, and I decided the easiest way for us to connect was for me to take the bus from the Cape directly to the airport.  Various siblings offered to drive me, but that would've involved them driving to pick me up & then up to the airport, which just seemed like too much to me.

It all would've worked out fine if the bus hadn't died at South Station.  They said another bus would be along in in 5 minutes, but I know what those "5 minutes" become, so I got on the Silver Line to the airport -- which involved about a 10-minute walk through the maze that is South Station to get to the bus.  The family's flight arrived about a half-hour early, so they were already at the airport.  Then there was a fair amount of back and forth over where to connect, but I finally met them at the rental car depot, and from there we dealt with the maze that is Logan airport's central parking and finally, finally located the chapel where we attended a really lovely Mass.

And then we drove to Connecticut.  We stopped for dinner and by the time we finished it was raining, and DH drove the whole miserable way, for which I was very grateful.

Since then the weather has been gorgeous.  Sunday was saw a local production of Hair, and my poor mother-in-law is still scandalized by the nudity and I think somewhat perplexed as to why we are not. The kids were unfazed.  At this point in their young lives, they've seen it all, and the nudity wasn't aggressive or prolonged, although it was quite complete, as the entire cast strips down.  It was a great production, with phenomenal singing.  I enjoyed it and the opportunity it gave us to talk with the kids about the whole hippie lifestyle, which is not appealing to them.  DD is somewhat drawn to the hippie aesthetic -- the look, not the philosophy -- as am I, but you can borrow from the style without having to buy in to the philosophy.  I do it all the time.

Yesterday we hiked Talcott Mountain, as we do every year.  But this year DD and I took the blue trail down instead of the yellow trail, and it was a much more interesting and challenging hike.  The yellow trail is basically a walk up (and down) a long, sometimes steep hill.  The blue trail puts you into the woods and over the huge rocks.  Both are gorgeous but the blue trail had the advantage of being empty except for us.  The yellow trail had the advantage of leading us to a tiny bright orange salamander, which made my day -- this is the first time I've seen one in the wild anywhere in New England, something I had thought I would never do.

Today we had an exceptional tour of the Mark Twain house, led by a friend of my mother-in-law.  He was entertaining and so knowledgeable, and he gave us peaks at several rooms that aren't usually on the tour.  We were very late for our lunch reservation so we'll have to go back so I can get this:

This cat was the starting point for the bedtime stories Clemens told his daughters, and I would love to get a framed print of it.    Lunch was at The Pond House, and while the service was somewhat desultory and the soda completely flat, the food was outstanding and made up for whatever deficiencies came before it.  I had the grilled and chilled peach salad which was perfectly balanced and delicious.

After lunch we wandered around the gardens of Elizabeth Park, enjoying the absolutely perfect weather.

Meanwhile, back in Massachusetts, Mom is in rehab and on a nebulizer because she's having trouble breathing now and then.  She is compliant during her physical therapy sessions but then gets back into bed immediately and stays there for the rest of the day.  She doesn't want to do anything.  I don't think she has the energy to be bored. She tells me she's not having any pain, she just feels "kind of numb."  It's very sad.  She won't even go out in the wheelchair to see the beautiful flowers they have on the grounds.

panorama of Elizabeth Park's annual garden