No "right" answer

In college I had one professor in particular that had multiple choice tests that were "choose the best answer" not choose the "right" answer.  I hated those questions.  I would rather have an in class essay, a take home essay, a project, a presentation, a practical, a term paper, anything except the "best" answer, as there would be at least two answers that were correct, but I had to divine which would be best in my professor's opinion.  Unless it was obvious (which most of the time it wasn't), I would write the pro's and con's for each answer.  I would think of how I would weight each pro and con.  Then I would try to think how my professor would weight each pro and con from what she had said in lectures and through my general knowledge of her and how she thought.  It was maddening.  There was little recourse if I picked a correct but not "best" answer.  I was a rare person because I occasionally would win credit or partial credit for my "best" answer because of my pro/con list and weight marks I would make in the margin of my test.  My test books were a mess by the time I was done if you were wondering.

I've found those tests, while annoying, taught me about life (and I guess the subjects they were supposed to, but to be honest, I can't even remember the specific classes that professor taught).  Or maybe more specifically, they taught me how to critically think about a series of possible answers.  My pro/con lists, with notations of which pros and cons were more important than the others.

Obsidian had an appointment this week with his genetics doctor.  His weight has stayed on his curve for weight gain.  According to the measurements, he lost 1cm of height.  We are going with the assumption that he didn't shrink.  When Dr. N and I last talked, there was significantly less information on Obsidian's chromosomal deletion than there is now.  He had a fair size file of the articles that have been written regarding del 15q11.2, including some that are yet to be officially published.  6 months ago, his deletion was not linked to small stature or gross motor delays.  Now, there has been some other cases that there was small stature and/or gross motor delays.  The strongest links are still to more behavior, cognitive, and seizures problems.  There are completely "normal" people that have also been found to have the deletion.  Current thinking on the deletion (to the best of my understanding) is that it leads to a genetic predisposition of a number of problems.  Obsidian either inherited the deletion from Jet or I or it is a de novo deletion.  The researchers are now thinking when it is inherited, the children have similar issues to what the carrier parent has.  So in Obsidian's case, since Jet nor I have any of the signs/diseases associated with it, the working assumption would be that Obsidian would not be at that much more risk for the problems that show up later than the general population.  6 months ago, Dr. N did not see any benefit for having Jet and I to have a chromosomal study done (unless we wanted it for family planning purposes, which we don't).  So Jet and I were happy to not open that can of worms.  However, now, he is recommending we at least consider it if our insurance covers it (which is a whole different issue for a different rant).  If it was just looking for the 15q11.2 deletion it would be one thing (and we could request no other information be given to us).  But we could find out something could indicate future health issues for one of us.  And what real, tangible is not the correct word, benefit would it be to Obsidian?  Yes, he has the deletion.  Yes, we are aware of the problems that might show up in the future.  But no one can predict if they will be problems for him.  He has not had any of the most common issues (being seizure disorder, mental retardation, and delayed speech).  We might not be as concerned, but it will always be there (at least until he is in his late 20's-early 30's as most of the time it shows up before that point).  There is always the chance he would/will develop them even without the deletion (however, he wouldn't be Obsidian if it weren't for the deletion because it is part of him).

So Jet and I need to decided, unanimously on a question (to be tested or not), that does not have any real "right" answer.  Just a "best" answer.  A best at the current time.  A best for the future (as seen from now).   At this point, I'm leaning towards no.  We will wait and see more.  We can always choose yes in the future, but we can't change our mind back to no...

Yes to chemo

After much thought on my MIL's part, she has decided to at least try chemo for her ovarian cancer.  If things go as planned, she will be starting next week.  If things go as hoped, there will be 6 rounds of chemo followed by hormone therapy.  I hope things go well.  For her sake.  For Jet's sake.  For my sister-in-law and her family.  Our kids don't really know her, and only see her once a year, so it won't impact them as much.

Jet and I didn't wish each other "Happy New Year's" this year as it would have just felt hollow and sarcastic.  MIL cancer and its treatment being one major reason.  Once again this year we are not planning any family vacations so he can spend his vacation time caring for her if needed.  She lives alone and my SIL is... unable/unwilling to help.  So the plan is Jet will go up and care for her in the days she needs him after each treatment.  I don't begrudge my MIL time with Jet.  And I don't begrudge Jet time with his mother, but it does make it hard on me.  Particularly when I see my SIL living less than 10 miles away and unable to help because she doesn't have the time, but she has the time to go on week long vacations, weekend getaways, and out of town dance competitions with her girls.   For the 2nd year running, our "vacation" throughout the year is periodically having to be a single parent and keeping the house going on my own.  At times I feel guilty about this, at others I feel justified, and others just frustrated by the whole situation.

I just hope this buys my MIL time on the good outcome sides of the statistics.  50% survival rate at 2 years, 40% at 5 years (although it might have changed because those are for people who start chemo within a couple weeks of surgery, and my MIL will be close to 3 months as it took that long to decide). 

Thankful Thursday

In no particular order:

• My front loading washing machine
• The "sanitize" option on my dish washer
• The flu shot (while we all got sick, very consistently the people who did not get it were much much more sick and it lasted a long time)
• Specific people in my life and my children's lives that have the knack of saying and doing just the right thing at just the right time
• Having an occupation that lets me have a wide variety of options, that I can fairly easily execute if I choose that path
• PBS kids shows, and BBC kids shows on Net.flix
• Heavy comforters, I just love curling up under them during the colder month

Wordless Wednesday

Thankful Thursday

• That we live so close to so many world class health care options.
• Good Earth tea.  Yum.
• Good books.
• MP3's, you can bring a whole bunch of music with you anywhere.
• The ability to connect to others I wouldn't otherwise be able to by the internet.
• Unseasonably warm weather
• Floor space in my living room again.

Wordless Wednesday

Touch-points

This time of year, many people look back over the past year or decade and reflect what has happened.  I have never been much for celebrating New Year's or making resolutions.  There are touch-points I do have a tendency to reflect on my past and make resolutions for changes or to just do things in my future.  

There are certain touch-points I have created for myself.  Days that I have thought about what my exact circumstances would be when I reached them.  Some are concrete dates and others are achievements.  My 16th birthday, graduation from college, buying my first home, the day my youngest sibling was the age I was when he was born, my wedding day, the day I had my first child, the day my youngest child moves out of my house,...  When I was diagnosed with diabetes, for whatever reason I created two touch-points in my head.  The first was when I had lived with diabetes longer than I had lived without it and the other was when I had lived with diabetes for 50 years.  Today is the day I have officially lived with diabetes longer than I have not (which isn't entirely true as I had obviously had diabetes for a while before I was diagnosed, but if you count when I've known that I have diabetes, today is the day). 

Some of my reflections are just changed that I have seen with diabetes care itself

• Glucose monitors are much improved.  My old Lifescan One Touch II meter seems archaic.  It was relatively huge.  It took 45 seconds and a much larger amount of blood.  It only came in one color, gray.  It was high tech for the time, a feature that allowed you to download it to your computer just came out and had a fairly large memory of how many readings it stored.  The cable was a  9 pt. pin cord.  The program was cumbersome.   Now I mainly use a One Touch UltraMini.  It is small.  It takes a small amount of blood.  It takes 5 seconds.  I have ones in pink, green, and blue.  It doesn't have downloading capability but I don't really want it to.  If I wanted a meter that could do that, I could easily have one.  When I'm really looking at what my blood glucose is doing, I hook up my DexCom SevenPlus (which is several improvements from the DexCom STS, and the MiniMed CGM that only my doctor could see my reading after I brought it back) continuous monitor for however long that sensor is going to work.  I get a new reading every 3 minutes (well, when it isn't having issues).
• I have gone from using as many other were at the time 2 injections a day of R and NPH.  I have used a number of different insulins (Humalog, Novalog, Ultralente (which isn't even made anymore), Lantus, and now Apidra).  I switched to multiplw daily injections then to a pump.  I'm looking at getting my 5th model of pump and nearly 12 years of using pumps.  Syringes have gotten shorter and thinner.  The number of types of infusion sets has increased many fold.
• The DCCT has announced its results and then some follow up studies.  Papers have been written on the DPT-1.
• ACE inhibitors have come on the scene.  Hopefully kidneys will be saved.

Yet, there s no cure.  Type 1 diabetes still kills.  It still steals qality of life.

I've lost an uncle to "dead in the bed" syndrome due to type 1 diabetes.  I've watched another uncle lose more and more physical health to complications of type 1.  I've watched 2 first cousins be diagnosed.  I've watched friends suffer the negative consequences.  I've made friends, some lifelong, because of the common thread of type 1.  I've listened to family, friends, acquaintences, doctors, co-workers, and others blame a person for their medical problems because they have type1.  Humans are not made to be beta cells.  The general lack of understanding of how much is involved in manging or rather living with typ 1 diabetes involves.  That type 1 diabetes is a different disease than type 2.

It is tiring.  Day afater day.  Knowing there will be no day off.  No vacation.  Ever.  The time it takes to "manage", the feeling of crap that happens with glucose swings.  That happen daily, multiple times.

Yesterday and the day before, I spent at the wake and funeral of my aunt.  She passed away unexpectedly.  She was 54.  She was 3 days short of her 33rd wedding annerversary.  She has 2 grandchildren and another on the way.  She is missed.  One minute she was tired but walking to the dinner table, 30 minutes later was was gone.  Life is precious, unpredictable, and short.

I wanted to get something to mark the day.  Something specieal for myself.  I have wanted a SLR camera since high school.  So I have saved, worked extra, and watched for sales.  And I got one.  Something to mark the day, the accomplishement.  I have survived.  I have won some battles, I have lost some.  So far, I'm winning the war.  I'm still fighting which is one of the most important points.  I now have my camera.  Later today a friend and I will go out for a drink or two.  And I will keep going.