isoflavones and lymphedema

please forgive the no caps and the typos…. i’ve not had to keyboard onehanded since george was first learning how to nurse…..

since starting at the lymphedema clinic, i’ve been wearing this new bandage contraption (see above.  it’s totally huge.)  24 hours a day, except when they are actually working on me while i’m there.   needless to say, it has motivated me to do lot of research into what’s new and exciting in lymphedema treatment.   the coolest thing i’ve read sp far has been all about free flap lymph node transfers…. when reconstructive surgeons take a chunk of inguinal nodes and transplant them to under your arm.  right now i’m not up for any surgery, but maybe someday…. it’s still kind of new anyway, perhaps they can practice on lots of other people first.

then i read that isoflavones can help your body build new lymph pathways.  mostly we consume isoflavones from soy, but they’re found in blackberries, too.  and kudzu.

no doubt the sugar and the bad fats in cobbler totally counteract any benefits from the trace amounts of isoflavones, but oit was on sale and is good for my mrntal health, which needs all the help it can get.  lymphedema clinic and this new cast/bandage are really hard. 

but at least i have an excuse not to do housework.   this is good since emily has turned the bathroom into her video studio.

she’s gome from main lesson books to main lesson videos.  check out her website:

www.coolstudyguides.com  

but evn if she’s become a cool videographer, she’s going to have to wash the bathroom wall herself !

There was a house…

There was a house, a napping coughing house, where everyone was sleeping wheezing…

Actually, not all wheezing.  Brian and Dixon seem to be fine, and George and I also have tonsillitis.  The hardest part of the whole thing is that George is having sleep apnea… children with Downs have little airways and any swelling is therefore a big problem.  Up until now he’s been our best sleeper ever… but we are now on day 9 of taking shifts with him at night.

Everybody but George got to escape the napping  coughing house to play in the snow, though.  The big kids and their friends were out in it by 7:15 yesterday morning… I will be forever grateful to Betsy and Sara who anticipated this problem and had brought over a big sausage pie and a big box of hot chocolate…. they must have known we’d be serving breakfast to lots of coughing  cold children.

I think I am also grateful that it only snows once a year here.   What do moms who have a child with CP do when they have to put boots over braces?  I sent Danny out in somebody else’s outgrown shoes and no braces, but that wouldn’t work if it were a daily thing… and it’s hard enough to deal with shoes and braces… I can’t imagine BOOTS!  But many, many moms somehow manage it gracefully every day.  Not me .

Various updates:  310 hats project:  I’ve got more than a DOZEN boxes of yarn packed to go!!!  They’ll go to the post office as soon as the roads aren’t icy.  For the people who are going to knit hats but don’t need yarn, I’ll email you tonight or tomorrow with the sizes and the mailing address for the finished hats.

Lymphedema clinic:  This is HARD.  I truly thought I was at the very limit of my tolerance on Friday.  Just couldn’t take any more.  Then I got tonsillitis.  Ugh.  I’m thinking about having friends drive me to the clinic this week and next so that I can take extra pain medicine before I go…

Late breaking news from the Napping  Coughing House:  Schoolschool for tomorrow is cancelled already.  I can’t decide whether to be happy because everybody will be home with me where they belong, or distressed because the snow day dance will continue:  Put on your coat, hat, gloves, dry socks and shoes.  Go out the front door.  Play hard and get wet.  Come in the back door.  Trail wet garments through family room through to kitchen.  Get cocoa and/or soup.  Find dry coat, dry hat, dry gloves, dry socks and dry shoes.  Go out the front door….

Intersection, free yarn.

Remember Venn diagrams?  I always think it’s great when two or more of the circles that define things that are important to me intersect.  It actually happens often… perhaps since special needs children and cancer have forced me to downsize my life in so many ways, what’s left tends to go together, KWIM?

But here’s a fun one.  Homeschooling, books and fiber arts.  It’s obviously easy to find the intersections in any two of those subjects… but when all three overlap, it makes me happy.

Is this a math book or a knitting book?  Hmmm… check it out:

Any book that contains a paragraph like this one is sure to keep my attention:

“Part of the fun of topological manipulation is that there are so many geometric ways to achieve a particular topological construction.  To glue the antipodal points of a topological sphere, we may use any antipodally symmetric solid, and it is interesting to consider what happens when we begin with a regular solid other than a cube.”

But there’s more to homeschooling than math (much to Sam’s dismay ) 

This is the neatest book!  It has projects that correlate with many classic children’s books.  One in particular is near and dear to my heart.  Perhaps a year ago, before a big surgery, Elizabeth Foss and Melissa Wiley teamed up to send me a few UNABRIDGED books. 

In addition to patterns for projects to go along with Redwall, Mary Poppins, Mr. Popper’s Penguins, The Secret Garden and more, Mrs. Gildersleeve has included two projects for Little House in the Highlands, by Melissa Wiley!

If you have a few minutes, go check out both Elizabeth’s blog and Melissa’s blog.  Elizabeth is a dear friend and a daily source of wisdom (and links to so many other valuable resources!) , and Melissa’s blog is an amazing fountain of books, ideas, insights into parenting special needs kids, and more.

But before you do that, go to the

310 hats blog  to check out progress on a service knitting project.

Friends of mine (in particular, Esther, of the comments….) are trying to make 310 hats for kindergarteners of the Choctaw Nation before school starts in the fall of 2010.  I have made four so far.  Here’s my most recent three:

Since as of 11:15 today I will be unable to knit or spin or anything for three weeks, it would be great if you all could make a few hats.  I’ll provide the yarn.  Send me your address and I’ll mail you three 100 gram skeins of 100 % superwash wool, in exchange for making at least one hat for the 310 hats project.  I can usually get a kindergarten sized hat out of one skein, with a bit leftover (which I use for stripes on subsequent hats) so you’d have two skeins left for a grownup hat or some mittens for yourself. 
Email your mailing address to:

esdehority@aol.com

and I’ll get your Moda Dea Superwash Wool yarn in the mail right away.   Free yarn is good, hats for kindergarteners are good, working together to help children with challenges is good…. I can’t think of Venn diagram sets that exactly fit, but I’ll work on it.  While I’m packing up yarn.

Today: Lymphedema Clinic

Ever since the summer, I’ve had lymphedema in my left arm.  We knew to expect this when I had my very first surgery, because they had to remove so many lymph nodes and every single one was malignant.   Then they treated all those areas with lots of radiation, creating burn scar tissue on top of the surgery scar tissue.

Lymphedema is swelling of your arm (or leg) that happens because all that high protein lymphatic fluid that usually travels freely through your body gets stuck there, because its regular path back to the rest of your body is damaged or gone.   Then that lymphatic fluid attracts more lymphatic fluid, and the process begins.

Lymphedema is incurable.  It requires daily management for the rest of your life.  Since August, I’ve been wearing layers of special bandages to keep it under control.

I also have some elastic sleeves and gloves that I can wear when the swelling is not too bad.

Today I start treatment at the lymphedema clinic.  Why have I been putting it off since August?  Because it’s going to really, truly interfere with my ability to do my job.

I’ll have appointments daily for 1.2 to 2 hours, and I won’t find out until today what time slot I get.  Knowing my luck, it will be at exactly the same time as Sam’s Latin class down at Covenant Day and George’s therapy sessions at Touchstone.  I might need some help with driving the boys around.

Every day, the therapists will do their treatment, then wrap me from fingers to upper chest in multiple layers of bandages that have to stay on until my next appointment.  I can shower if I cover the bandages with a trash bag, well taped and sealed.

Part of the therapy is called “manual lymph drainage” which means that the lymphedema therapists use their hands to get all this high protein lymph fluid out of my arm and into my chest, abdomen and pelvis, where it can circulate and be absorbed.  Because of all the nerve damage in my arm and chest, I REALLY am dreading this part of the treatment.  Gosh, I wish I’d been able to get that epidural steroid from the unpain guy last week…..

I asked then what I would need to do if the bandages got soiled or wet.  (Think “changing an icky diaper” or “pushing the violetmobile to school in the rain” or “exploding bag of tube feeding formula”…)  They told me that I was absolutely not supposed to do those things… and that the immobility caused my the thickness of the bandages would limit my activity enough that I shouldn’t worry.

So how am I supposed to do my job?????

I’ve actually been preparing for this for a while.  I have two weeks of meals set.  I have great new books and podcasts on my ipod.  I’ve sort of come to terms with being unable to spin or knit for a while…. so I can spend this time organizing my yarn stash and putting a big bunch on ebay.

Once the therapists get my left arm to sort of resemble my right arm in size and shape, I’ll get custom fitted for a special (and amazingly expensive) sleeve and glove to keep things under control much better than my current generic sleeve does.  Then, I hope, I’ll  be able to wear the new sleeve during the day.  I’m not sure what the night plan is yet – it may be the same old bandaging, or it may be a fancy all-in-one pumper sleeve…. we’ll see.

My appointment is at 2:00, so the plan for until then is to get as much done as possible that I need two hands for.  Like finishing one more hat for the 310 hats project .  I’m E3.  If you want to participate in this charity knitting project, I will happily mail you 100 % wool superwash yarn in fun kid colors (see destash goals, above .  But don’t put your mailing address in the comments  – send it to me in an email

esdehority at aol dot com

OK, time to get off the computer and get to work.  I’ve been putting off this lymphedema treatment since August.  I know what to expect, and I know it’s going to be a tough few weeks.  I am so thankful for friends who are always so happy to help with childcare and meals (which I don’t need at the moment) and prayer and just coming over and ignoring the books covering every horizontal surface of my house… and managing to find a spot to sit down and chat awhile… and helping with the driving, and being available by phone 24/7 when I’m totally in a panic about all this. 

Danny’s pumper is beeping.  Gotta go.

When the phone rings at 8 AM

The kids and I leave for Faith Formation at 8:30, so I was running around finding 10 shoes and getting George’s clothes ready so that Dixon could meet us at 10:30 Mass…  but anyway, when the phone rings early Sunday morning, it’s natural to assume it’s bad news. 

Not this time!  It was Susan F. (who knew that we would all be up and running around ) calling to tell us to look at our newspaper.  Remember the chess tournament the kids were in last weekend?  Or maybe I didn’t tell you about that one… I guess with everything medical going on, I’ve been leaving some little gaps  (OK, leaving gaping craters….) in the blog lately.

Anyway, there’s Danny, with the headline:  Champions of the Chess Board .  Which he wasn’t – a champion, I mean – but it was still a good tournament, Sam got a nice trophy, even though he had to take a half point bye to go to a basketball game,  and Brian played well.  Danny had SUCH a good time at Faith Formation and Mass this morning, since everybody seemed to have seen his picture and wanted to tell him about it. 

I think that’s a GREAT reason for the phone to ring at 8 AM on a Sunday, don’t you?

OK, that didn’t work out the way I thought…

Which is better – to write a brief blog post just to let you know what’s the latest, or to put it off until I’m guaranteed to have an uninterrupted hour to write out everything and add photos?

Brief is going to have to do.  Otherwise it might be about a year

Today was my appointment with the pain guy.  Oops.  Unpain guy.  I was supposed to get an epidural steroid injection to help with the neuropathy in my arm.  I had gotten my blood work checked, and my platelets were plenty good enough, so I was set to get some relief.  BUT, remember the mess with my arm last week?  Well, the pain guy said there was no way he was going to do an elective procedure involving my epidural space and therefore my central nervous system while I was immunosuppressed, still on antibiotics and still had a swollen mess of an arm.    So no epidural steroids.  I was really frustrated.

We got the chest CT results back – absolutely unchanged from the last one.  The radiation pneumonitis in my left lung is the same size and density, and the lumps in my right lung are still there, no bigger, no smaller, no fewer, no more.  Nobody’s decided what to do about it all yet… could it all have been worse if I hadn’t had all these drugs?  Or perhaps all these drugs haven’t been helping, despite their side effects and complications?  My guess is that it’s going to take WEEKS for all the doctors involved to arrive at some sort of conclusion and come up with a plan.

OK, my brief time is all used up, and I have GOT to go to bed.  I think not getting the steroids and nerve block wiped me out more than actually getting it would have   Maybe I’ll have time for details and photos tomorrow.

another day, another visit to the hospital

yesterday i had my follow up chest scans.  today, when i walked into admitting to do the paperwork to get a totally unforseen and unrelated duplex doppler study of my neck and left arm, the admitting lady asked me,  “weren’t you just here for radiology yesterday?”

i held up my really big swollen red-spotted left arm to show her - it seemed easier than trying to explain – and she said, “Oh my gosh, did they do that to you?”

no, they didn’t.   but it was funny at the time.   guess you had to be there.

anyway, you all know that this arm of mine has been nothing but trouble since my first mastectomy… but today takes the cake.   i woke up this morning with bad swelling and spots, so i saw the surgeon, got bloodwork done and got the doppler study.

all we know for sure so far is:

•  that there isn’t a blood clot,
• that i don’t type well with one hand,
• that it’s still getting worse
• and that it would have been much more fun to go out for lunch with danielle like we’d planned. 

we’re assuming it has something to do with being immunosuppressed or the new chemo drugs or something.   so i’ll see one more doctor in the morning and the surgeon again in the afternoon.  unless the first guy fixes it, in which case i’ll be perfectly happy to not see the surgeon.   not that he’s not a great guy and all, but you understand…

oh.  i learned one more thing.  it’s not physically possible to take a photograph of your own left elbow with a nikon d200 with a long lens.  sorry.  so instead here’s a photo i’ve been promising danielle for like two years…. the only thing it has to do with today’s excitement is that i was at the hospital at noon instead of out for lunch with danielle, whose husband is in the picture.  but it looks way better than my arm anyway

Blog posts in my head and in my camera

I got behind, and now I’m stuck.  I have SO many blog posts stacked up in my brain waiting to get typed into the computer with all their corresponding photos that need to be cropped and resized and all… and then it seems like every day something new comes up that I’m so excited to share with you… but I can’t post that one until I’m done with the day before, which didn’t get done for various reasons.

On my list:

• A cookie party, and the ministry of the friend who brought it
• Christmas mass adventures and the nativity play
• Christmas itself (and how it worked out to have Dixon have to work the 24th, 25th and 26th)
• Our family vacation with Nana, Papa, Jane, AJ, David and Nicholas at the Great Wolf Lodge
• Sam’s return to NC
• Sam’s 14th birthday
• Jessica (violin teacher) is moving! 
• Friends of ours who are stuck in Ecuador who need just the right person to help them.

See!  And ALL those things have stories (some happy, some sad) and often funny things to share, and there are some wonderful photos.

But today, we’ll talk about today.  Then maybe every other day I can do one from the list… like alternating… and we’ll get caght up. 

Today George went for his surgery follow up for his ears.  Because the surgeon was worried about his hearing on the right, just from playing with it in his office, rather than sending us over to schedule to come back for his audiology appointment in a few weeks like we usually do, he walked us right over and bumped us in front of all the waiting people.

His left ear is better than before surgery.  He can hear low frequency noises at a normal volume, and higher frequency tones almost normally.

His right ear is not good.  The hearing is actually much worse than the last time they tested… perhaps 7 months ago, not just before this last operation.  He can only hear very loud low and midrange noises, and they couldn’t be certain he has any speech discrimination (that’s being able to tell between different words) even at the loudest levels.

So we’re going to recheck it in exactly two weeks. 

Meanwhile, tomorrow I have my follow up chest CT.  It’s possible that I’ll have some results Friday, but it will likely take a week or more for everybody concerned to come up with a plan about what to do unless it’s all perfectly normal.  I guess during that week I can get caught up on the list from up top   But also tomorrow, the MEF is being offered for my intentions (Thanks, Lisa!!!) …. isn’t it amazing how her special timing always works out???

I’ll let you know about the CT as soon as I know anything.  I promise.

How does a mama get ready for Christmas?

Not very efficiently around here, I think.  But it seems like every time I get stuck on something, a friend just shows up on my doorstep to rescue me… not just trees, but meals, cookie parties, treats for the kids, you name it.

But meanwhile, at 12:53 in the afternoon on Christmas Eve, this mama isn’t close to being done with her Christmas knitting.

Somebody might be getting a parcel of yarn and a paper pattern instead of a sweater !

But I got all the socks done for my book club and a few other friends – and they’ve been delivered.  Even the pair that had to get fedexed yesterday. 

And this mama got all the notebooks ready for the string players before Mass this afternoon.  Despite chemobrain, I managed to make sure that the entire score of each piece was visible without page turns.  Emily says that’s worth using up lots of tape for.

And hot glue is even better for mamas getting ready for Christmas than tape.  Danny and I got ribbons on all his newly painted ornaments for the magic tree that appeared the other day.

So Danny liked how his ornaments looked on the tree so much that he put his smock right back on and painted some more.  Did you know that some day after Christmas I might be able to go an entire day without washing out paintbrushes?  Maybe.

But speaking of tape, this mama decided to get ready for Christmas by having enough for each child to have his own extra roll for his dispenser when we’re wrapping presents.  Why stress about tape?

Now if I could figure out how to tape down the Playmobil nativity guys… how many times a day can one mama re-collect all the pieces and get them all vertical again?  How many days has Advent been?

But one night this week, after putting the nativity pieces back for the last time, while everyone else was sleeping, one mama figured out how to do marshmallows in the oven.  This is a secret. 

This same mama decided that even though she’s never seen smores on any list of Advent or Christmas treats, they just might be good for her maternal mental health.  This is a secret, too.

Mental health food is especially valuable when knitting goes wrong.  Have you ever known another mama to knit her ipod headphone cord into the edge of a scarf?  What a mess!  What a way to get ready for Christmas!

And of course mamas get ready for Christmas by sewing emergency shepherd costumes.  I know real shepherds can be very patched and mended… and even have lots of frayed edges and all… but the one costume that came closest to fitting was too worn out to even stay on. 

So while Emily and Annie made new staffs (with PVC pipe and spray paint and duct tape) one mama got ready for Christmas by making a new shepherd costume for Danny for the nativity play this afternoon.  Brian’s a narrator – he just has to wear a blazer and tie .

I’m NOT ready for Christmas.   I think Advent was all taken up with practical work,  and my spiritual preparation has lacked in a big way.   But we’ll walk up to church this afternoon, ready or not, and Santa will come tonight, which is a major miracle… and tomorrow will be a blessed Christmas, filled with so much to be thankful for.  I might just go take a nap and think of my gratitude list….

In anticipation of chocolate

George turned two on Saturday.  Emily and I baked him a chocolate-frosted cake, and I thought that perhaps it would be easier to get the frosting out of his hair after supper if we got his long-delayed haircut out of the way first.

George wasn’t sure exactly why he was sitting in his high chair in the bathroom, but he knew it wasn’t right.

He was bald for so long that I think this perhaps was only his second or third haircut.  Therefore we got to get a few good snips in before he figured out what I was up to.

Talk about making a mama feel guilty – when your baby cries like this on his birthday and it’s all your fault  

But George forgives fast… almost as fast as I (after four boys) can cut hair.   So we were ready for the festivities.

The kids had spent an hour video chatting with Sam earlier, which according to my secret sources ALMOST made him think about missing us  – or at least George.  But we didn’t try to link up for the whole cake thing…. regular photos are going to have to suffice.

We had been practicing “blow out the candles” for weeks, but he still got that confused with “blow kisses”…  Either that or as far as he was concerned, candles meant singing and clapping so why blow them out and make it end?

He definitely didn’t know what was going to happen next.  I think perhaps my youngest son hasn’t had enough experience with good desserts – don’t you think he looks a little nervous in the picture above?  Maybe he was worried we were going to cut his hair some more.

He started off carefully.  One handful at a time.  Look how tidy and white his tray is.

Soon he developed some confidence.  Both hands were working together by the third bite.

No doubt about it.  Chocolate frosting is even better than having your family sing and clap for you.

Now don’t you think it was a good idea to have cut his hair BEFORE the cake?