Showing posts with label lymphedema. Show all posts
Showing posts with label lymphedema. Show all posts

Monday, February 23, 2009

Long day. Nutshell version.

Went to doctor and had a suture removed. No, I haven't had another surgery since the big one in 2007. It's a long story and probably TMI for most. Making it be gone was not a pleasant thing. Should be feeling better tomorrow. Just glad it's gone now.

I've been randomized into the half of the clinical trial that gets to try the Flexitouch therapy, not the control group. That is awesome news. More doctor appointments to follow, though. Comes with the territory.

Two of our rats, Dureena and Delenn, have metastasized cancers. NOT awesome news. Meds will help keep them comfortable for a while yet, with luck. The vet and technician were both impressed with how loving and sweet the girlies were during their visit.

My Mister is awesome.

Heroes was very tense tonight. Black hat? White hat? How dark can a gray hat get before it's undeniably black? How can you tell if it's black or just covered in soot?

It's past my bedtime. Am clicking "publish post" and going to bed.

Tuesday, July 15, 2008

Return of the Mummy

Leg up and wrapped from foot to thigh to bring down the swelling from being up and around at work yesterday. Three inches of swelling around my knee and thigh goes beyond uncomfortable and crosses into painful as it puts pressure on my knee and makes it hurt to walk.

I brought it down a bunch overnight, then if the wrapping works it gets looser as the swelling goes down. So I have to rewrap to get more reduction since the bandages used for wrapping a lymphedema affected limb have very little stretch. So it's rewrapped now and elevated again.

The good news is my new compression stocking has arrived now so today, if I can get the swelling back down, I can wear that to work to prevent a repeat of yesterday's puffage. It's a higher level of compression than my previous stocking was, and it's full length, so I'm optimistic about having more freedom to get up and move.

I am due to get on a plane in 3 days, and flying aggravates my lymphedema, so I have to get the swelling down before hand. I'll be planning on sleeping in the bandages so any swelling that sneaks through my compression stocking can be brought back under control. That said, I'm hoping dearly that the stocking will do it's job and keep the swelling at bay.

Monday, July 7, 2008

customer service surprise

So many companies these days don't seem to use good customer service as part of their business philosophy. It is nice to be pleasantly surprised now and then.

I needed some backup short-stretch bandages - which you can't just swap for the ubiquitous Ace wraps or tape - and had no luck finding them in any of the local medical supply companies or drug stores. I have a new stocking on order from my Physical Therapist's office already. But insurance only covers a small number of them per year (and only one at a time), I need to wait weeks for them to special order them, and good luck if you want something special like black instead of bandage-beige. So I went hunting online.

I placed an order through LymphedemaProducts.com, and got a follow up email a little while after receiving my shipping notice:
[snip]
Hi Jennifer,

My name is Kelly Thomson and I am the Director of Sales for Lymphedema
Products. I have noticed that this is your first online order with us and I
just wanted to take this opportunity to introduce myself to you. Lymphedema
Products has been proudly serving customers for over seven years and if
there is anything I can do for you in the future I am only an e-mail or
phone call away. Please don't hesitate to get in touch with me if you have
any questions or concerns.

Sincerely,

Kelly Thomson
Director of Sales
[/snip]
It then included phone/fax numbers and an email that appear to go right to Ms. Thomson (I'm assuming Kelly is a Ms. rather than a Mr., but I could be mistaken) rather than to an anonymous help center.

Sure, it's probably a form e-mail to new customers. But the inclusion of contact information that reaches a person instead of a department struck me as that "personal" touch that you don't usually see except from some of the very small scale vendors online. So far it looks like LymphedemaProducts.com will have my business. I liked their selection, their info about the products and ease of ordering. And now their customer service appears to be good as well.

These are products that are near impossible to find in brick-and-mortar stores, they're not cheap, and they're things that periodically need replacing. And since there's no cure for lymphedema once it's settled in for the long haul, I'm likely to be a return customer for a good while to come.

Wednesday, June 25, 2008

brains, bandages and robin hood

Did I mention that the only thing my brain MRI found was a brain? Happy news, that, even if it does mean we still can't explain my wacky test results and symptoms.

I'm lying on the couch with my leg elevated right now and wrapped like a mummy because my lymphedema has gone nuts. I got a crash course today on lymphedema wound care when what should have been a tiny scratch became an big nuisance. Not infected, and I won't go into the gritty details here [edit: click the photo of the first aid kit if you want details], but suffice it to say I've got more layers of bandages on that little scratch now than I had for my laprascopic port incisions after my surgery.

lymphedema first aid kit

I've been watching an episode of Robin Hood on BBC America - via my DVR - while my leg is elevated. The episode I have right now is "Get Carter" and I must say it's one of the better episodes in this series so far, IMHO.

The series has it's pros and cons. Notably, on the pro side, is Richard Armitage as Guy of Gisborne. Hubba hubba. (Wait, did I say that out loud?) Also, the Sheriff of Nottingham is ridiculously, selfishly, snivelingly evil (in a good way), and is well played by Keith Allen. The story lines for each show are entertaining and sometimes pretty creative.

On the down side, Marian's makeup, hair and costumes are often so modern as to make her fit in like a shoe vendor at a snake convention. Other random characters periodically wander through wearing equally out of place clothes. I mean, I'm not particular about the costumes being historically accurate for the period. It's a fantasy story, after all. But Marian frequently looks like she didn't get the memo about the theme of the party.

Lucy Griffiths as Marian, however, seems well suited to her role. I quite like Griffiths, and the rest of the cast, though I don't find Jonas Armstrong as Robin very compelling. He's growing on me in the role in the latest season, but he's still the weakest link in the cast for me. Maybe I'm being to hard on him? I think Michael Praed cemented himself in my brain as Robin of Loxley in the 1980's Robin of Sherwood series.

Suggested listening for this post: Re Your Brains by Jonathan Coulton and/or Oo-De-Lally by Roger Miller (as Alan-a-Dale in Disney's animated version of Robin Hood).

Monday, May 19, 2008

1 Year 5 months and change

Went in for my quarterly post-cancer checkup today, which included a blood test this time. My doctor is checking to see what's up with my hormones before we decide for sure what to do about my hot flashes. Which have really been less "flashes" and more "stuck under a heat lamp" 20 hours out of the day.

Today was one of those all medical stuff most of the day kind of days. Physical Therapy for the lymphedema, oncology tests, blood tests, waiting rooms, driving to and fro and parking.

The news has been promising, my tests have been coming back clean since the surgery, and the leg is responding to the therapy quite well. May be able to switch from mummy wrappings to a regular compression stocking soon.

What I miss most, lately, with all the doctor/PT appointments, puffy foot things and being awake at 3 AM unable to sleep because I'm so hot is having a normal sleep/wake/work schedule.

That said, I've spoken to a couple of other women who had hysterectomies because of cancer, who also didn't have to do radiation or chemo, and who said it still took a full 2 years for them to really get back to "normal". Many others bounce right back much more quickly, but it isn't as frustrating knowing that it's not just me who deals with all this stuff.

I can't complain too much. The cancer has stayed gone, I'm still making progress, and I've been able to become mobile again since we got those nasty muscle spasms under control. All things considered, I have a lot to be very grateful for.

Wednesday, April 30, 2008

My mister meets A B

My Mister met one of his culinary role models two days ago. Alton Brown came to the Mall of America for a book signing, and Z got to attend, book to be signed and camera in hand. He came home an even more enthusiastic fan than he had been.

I'd've gone, too, but my lymphedema has been so puffy lately that I really didn't think it was wise to stand around in line all evening. Z said the line was so long, and so slow, that even though we'd both have liked me to be there, I made the right choice.

Not that my Mister was complaining. He loved the talk A.B. gave before the signing, and a slow line in this case was just indicative of Alton giving each person in line his individual attention. Certainly can't complain about that. But my leg would have been pretty unhappy by the end of a long evening standing around if I had gone.

At least I got to enjoy Z's photos.

Monday, April 28, 2008

Level 1 Troll Priest

Over the weekend I had a fair amount of time spent on the couch trying to get my foot to depuff. Light exercise helps with the lymphedema, but light exercise and then a bunch of elevation seems to help more. I've got some PT appointments coming up, too.

I used some of that down time to get the World of Warcraft troll plushie assembled. The knitting is done, the hair needs a bit of a trim, and his level 1 priest robes will be sewn instead of knitted.

I pondered a couple of methods of attaching his hair, and went with cutting lots of strands to the same lengths, bunching them together in little bunches like you might for tassels on a scarf, and tying knots in the middle of each bunch. Then, I stitched those bunches to his head by sewing through the knots. I created the braid out of three much longer bunches.

His tusks are felted to give them a bit more substance, and his ears are made from long, thin tapering cones, lightly stuffed to keep them lifted up. The nose was done the same way, but with a much smaller cone.

All in all, not a bad approximation of my Mister's main WoW character, Zwierdo. I may have to make him a wee plushie mace to wield, as a finishing touch. But clothing comes first.

Ok, break's over. Time for some PT, and then back to work.


Level 1 Troll Priest - Braid











Friday, February 8, 2008

sleep, sleep and more sleep

My Mister
My Mister
I had most of today off today, as a scheduled day off. I needed to catch up on some rest. My lymphedema had flared up with a vengeance, and I'm starting to find that more sleep equals less puffing. With that in mind, I decided that today I'd let myself sleep as long as my system wanted to. I did wake up a few times to answer the phone fairly early. But I each time I got off the phone I'd lay back down to see if I'd drop back into sleep, or if I was really ready to be awake.

So, when I finally woke up and felt refreshed, it had been 15 hours of sleep. My foot was completely de-puffed. The cats were sitting around staring at me, apparently annoyed by the change in my schedule. (They're such creatures of habit.)

So now that I'm caught up, the plan is to get back onto my schedule again.

I spent a little time this afternoon playing with Photoshop. The photo in this post is the result.

Monday, January 28, 2008

This day did not work out as planned

This day did not work out as planned. I was supposed to have a quick checkup with my oncologist for my quarterly tests to verify that I'm still cancer-free, followed by an afternoon at work populated by meetings. But this was the first my oncologist, Dr. A, had seen of my puffy foot. And, as none of the other docs I'd seen recently had done any tests to confirm that it really is lymphedema, Dr. A asked to have an ultrasound done. Today, if at all possible.

Now, when your oncologist says you need a test done ASAP, even if he prefaces it by saying that it probably isn't the scary thing he's testing for, it does tend to make for a little anxiety, and motivate you to rearrange your day to accommodate the test in question.

So, the good news is that I now know that I definitely don't have deep-vein thrombosis (DVT). And the meetings I missed have been rescheduled. And, as a bonus, Dr. A recommended a much less stupefying therapy for my sleep disturbances than the really unpleasant meds I've been taking over the last week.

Saturday, January 5, 2008

Kitty and Compression = Good


Missy Tash
Originally uploaded by Pockafwye
My "beauty observed" for today was our kitty, Miss Tash. She fell asleep on my lap today. I was still sitting in bed and making my plans for the day when she made herself comfy and took a nap. I sat very still, since she usually doesn't sit on me unless I'm asleep, and studied the creases in her fur on her forehead, and her cream colored whiskers. I've never payed close attention to kitty ears before, but this morning I noticed how velvety they are. The fur on one of her ears is half gray and half ginger colored, the other is all gray, and both ears are speckled with slightly longer white fuzzies. You can't tell by looking, but she's as soft as a bunny, especially on her cheeks and neck.

The compression stocking seems to have done the trick, if the first day of wearing it is a sign of things to come. I did a bunch driving around today and running errands and my ankle did not puff up. Joy! In addition to some shopping for groceries and other essentials I scraped the remaining melting snow off of the front steps so it wouldn't become a solid block of ice when the temperature drops again.

Today was a good day to be outside. With a high of 33°F (0.5° C), I was plenty comfortable in a sweater and a light jacket, and only needed to run the heater in the car long enough to take the chill off. The icicles on people's roofs are really beautiful in a dangerous looking kind of way. Some look like they must be three or four feet long. The sky was a kind of pale gray, the snow on the ground is all white (except by the sides of the road, where it's getting pretty icky) and there's still a bit of white on some branches on the shady sides of trees. The monochromatic scenery today was lovely in the way of black and white photos.

I did need to leave my jacket unbuttoned to keep from overheating, but couldn't bring myself to leave it in the car. The Californian in me still shivered sympathetically in response to seeing a few people (mostly under 20 yrs old) out in their short sleeves. But I'm starting to be less surprised by things like that each winter.

Friday, January 4, 2008

Puffy foot and politics


Battling the Puffies
Originally uploaded by Pockafwye
I spent an hour with the physical therapist learning what to do and not to do to manage my lymphedema.

Because I'd managed to bring the swelling down before the visit, my physical therapist was able to fit me for a compression stocking right away.

There are some rules to live by in addition to using compression. I'm not allowed to get any tattoos on that ankle, no soaking in a jacuzzi, no saunas, no sunburns. No IV lines or blood draws in that foot allowed. And I need to take good care of my skin, and promptly treat any scratches or bug bites.

I need to do breathing exercises, some basic self-massage, and otherwise do good stuff to take care of my lymphatic system so it can manage without the missing nodes. Including moderate exercise and stretching. I'll be going back to my Qigong and Tai Chi class now that I've got my mobility back.

I've got a plan, now. That helps my morale quite a bit.

Speaking of morale boosting, the Iowa caucus Democratic party results made me optimistic today. I'd love to see an Obama/Edwards ticket, myself. Kucinich has endorsed Obama as the preferred second choice for his own supporters, which speaks well of him (Obama) in my book.

I don't trust Hillary Rodham Clinton. She's too cozy with folks like Newt Gingrich for my comfort. Too ready to support certain questionable Bush foreign policies. Looks a little too much like she supports war on Iran, and doesn't satisfy me that she believes her vote for the resolution authorizing Bush to take military action in Iraq was a mistake. So while she rails against Bush on certain topics, I'm just not convinced she's really a force for change.

So the fact that Obama and Edwards both came out ahead of Clinton in Iowa makes me happy. I'm hopeful. If there's still a choice to be made by the time our time comes in Minnesota, I'll seriously consider showing up for the caucus after all.

Friday, December 28, 2007

Holiday in Virginia


Holiday in Virginia
Originally uploaded by Pockafwye
Catching up.

A lot has happened since my last post. The Mister and I flew out to Virginia to visit my family out there over Christmas. We had a lovely time, and among others we got to visit with Niece C, Nephew P and my 90 year old grandmother.

Grandma is amazing. She may be more frail, and move more slowly than she did years ago, but she's still sharp and beautiful, and still has her sense of humor.

The fingerless gloves I knitted for her fit, wonder of wonders. My hands are so very much bigger than hers, and I didn't have anyone around who wears her size to try them on. They are wool, cashmere and silk, so they should breathe well and be warm and comfy against her skin. If I could wear wool I'd make myself a pair of them from the same yarn in a heartbeat. I'm just glad I can knit with it, even if I can't wear it.

My step-brother-in-law is Italian, and his family joined us for a sumptuous multi-course Christmas dinner, complete with a cheese plate, oysters Rockefeller casserole (which I forgot to take photos of... Doh!), ham, home fried potatoes, lasagna, and almost too many kinds of desserts to count. My step-sister made an amazing orange and cranberry sauce to go with the ham. I think I ate more of the cranberry sauce than the ham.

My step-brother was there for the weekend, too. I haven't seen him in ages. We've never been close, but it was good to see him, and he seemed to be doing well.

My Honey and I bought each other new Crocs. The kind with the fuzzy lining in them. That came in immensely helpful, because my foot started to swell up the day we were to fly out. It had been doing a little swelling for maybe two months before, but not like this. My foot was swelling too much to wear regular shoes, but Crocs are so loose and comfy I could still wear them even with warm, thick socks. So we opened the crocs as soon as we arrived so we could enjoy our comfy feet during the visit.

We flew out just in time, I'm told, because there were white out conditions the following day that would have made flying out much more difficult. They had chilly days at home, and snow, while we enjoyed temperatures as high as the 50's and 60's F, and a little rain. The locals in Virginia were quick to mention that it was getting cold at night (down in the 20's to 30's F) but it was still warmer than what we've been seeing the last few weeks in Minnesota.

While we were visiting we discovered a lovely local pear port, made by the Horton winery. It was tasty enough to buy some to bring home, which now-a-days means finding a way to keep it from being smashed in your checked-through luggage. Wasn't such a big deal back when you could still carry a bottle of wine in your carry-on luggage. But it made it home without incident.

My Mister and I don't celebrate Christmas left to our own devices (though we do observe the winter solstice and Pastafarian season of Holiday). But Christmas is a very big deal for the rest of the family, and we enjoy being able to share it with them. Our extended family is so spread out that we don't get to see more than a few of them at a time each year. But we try to at least make sure we call on the phone to touch bases. And this year a number of my family members have added Pastafarian Holiday to their winter celebrations, so there was an added level of cheer all around.

Ack, which reminds me that I still haven't mailed out my holiday cards. Good thing they are "season's greetings" cards (to cover the variety of holidays celebrated by my friends this time of year). Note to self: get that taken care of this weekend.

Any way, be brought games for all the adults in the house. We played several games of Settlers of Catan, and a card game called Fluxx. Dad hooked the laptop up to his TV and I showed the kids what the winter holiday in Azeroth (World of Warcraft) looks like. Niece C especially liked watching that, and perched next to me as I made the run through some of the seasonal quests. My Honey also demonstrated the PC game Portal for me and Dad. I couldn't enjoy trying to play a game with so many mind bending changes of perspective, but watching the Mister play it was a whole lot of fun.

Dad and Grandma took me to a wonderful little yarn store near (in?) Middleburg, VA, and let me pick out some yummy yarns. I picked all things I can actually wear. Recycled sari silk, bamboo, and soy silk. Grandma really liked a Möbius cowl that was on display, knitted of very fine mohair and sprinkled with delicate beads. After looking it over for a bit I offered to make one for her, so I got the yarn for that as well. I've never knitted with anything so delicate before, but I am really looking forward to this project. Just need to go out and get some beads and a beading needle to get started.

It was a plush toy Christmas for me. I fell in love with a stuffed toy manatee (I named him Hugh) while shopping for the niece and neffling, and my Honey bought it for me. And I was also given a plush turkey vulture, along with other lovely presents. Niece C and Nephew P drew us some very detailed pictures, too, which was delightful.

Most of the adults went out after Christmas dinner to see the Tim Burton movie Sweeny Todd (based on the Stephen Sondheim stage musical). Not a jolly, happy holiday film, but then we're not a "normal" family. I'd watch a recital of the phone directory if it was directed by Tim Burton. And I particularly enjoy Johnny Depp and Alan Rickman and my Mister especially likes nearly anything with Helena Bonham Carter in it. So we were all for my step-sister's plan to make that our post-dinner outing. The film was dark and disturbing, funny and touching, and the sets, costumes and visual effects were lavishly macabre. I enjoyed it thoroughly.