Tuesday, September 28, 2010

Joining Forces - LiveSTRONG Day 2010

I decided to rest on my laurels once I lost enough weight to reveal I had laurels. This year I was asked to participate/join forces (combine forces or just follow the rules for) A Taste of Yellow.


October 2nd (yes, this weekend!) has been declared LiveSTRONG Day 2010. I'm guessing whoever (was that you, Lance?) declared it this weekend neglected to check with me and my SHEDule. I'm kind of busy doing nothing, you guys! Oh, yes. I have sand to vacuum out of the vertical hotrod after our run to the beach with the dogs. (I knew there was something.)
Hannah enjoying a Taste of Yellow


In order to participate with Barbara over at winosandfoodies.com who is the founder/packleader/guru of A Taste of Yellow, I have to cook something and photograph the something that I cook that contains something yellow and a heart. So any legit ideas would be appreciated in the comments. 


These foodie folks that read winosandfoodies are real foodistas (probably make me look weak).  I can't eat or drink anymore. But I don't want some bogus idea of cutting a heart shape out of lemon jello because that's probably what I'll make anyway. Maybe I can make a playdoh heart. Playdoh is edible, right?


Here are the Taste of Yellow 2010 rules:


1. The photo must include a yellow food. (darn it!)

2. It must feature a heart in the photo - this could be food baked in a heart shape or food decorated with hearts.(corn?)
3. Your heart photo must be created specifically for this LiveSTRONG With A Taste Of Yellow - Heart Series.  It may also be submitted to events such as DMBLGIT, Tastespotting, FoodGawker, Flickr groups, Project 365 .
4. Please include a link  to this post. It helps raise awareness of LiveSTRONG Day.
Email your heart photo link to:  atasteofyellowATgmailDOTcom 
Let me (me! -Janell) know if send your photos/recipes. And if I hear nuttin from no one, Lance is gonna hear about your lack of participation.
I expect Baglady to take part in A Taste of Yellow at a minimum - mostly because I send her all the recipes I would like to eat so she can make/bake them and report back to me. Then I don't have to make whatever it was and gain weight. I just take BL's word for it.
I'm thinking eggnog fudge is kinda yellow-ish. Too bad the eggnogs aren't in season yet.

Monday, September 27, 2010

Cinnamon, Sugar and Beach Sand

Hannah visited the junkhouse on Saturday night so her mom and dad could go out. I had been invited to the same house-warming party they were attending though my excuse not to go was that I now own a dog that cannot go anywhere there are civilized people. Plus who has a house-warming in 100 degree weather? Most likely Bella would have been one of the only few guests at the house-warming party with which I wanted to talk.

I stayed home with Bella and Hannah. We made dessertWe She ate candy for dinner. We She stuck her fingers in the frosting. My duties are to measure out the ingredients and let Hannah do the rest. She licked the batter which before sugar was a hideous idea. Typically I don't recommend baking much post weight-loss surgery. We baked because I wanted to do something I consider fun with her (we made a cake last Easter and she still wants to know where it went (to the Easter dinner gathering), not as an excuse to eat crap cuz I can eat crap by myself. I have good memories of baking with my mom. So I guess I'm sucking up in the lasting memories associated with things that made a big impact (literally and figuratively) with me. Cinnamon and sugar. I don't recommend the "dessert" we made though. It was too fattening, fatty, gross, no flavor and dry. I tossed a piece of the cake to Bella and she immediately took off with it to bury it in a pile of laundry to improve the taste. I'll probably find it in a couple of years unless it starts to smell bad.

Friday was very hot. Saturday even hotter. Sunday seemed a tad bit (who talks like that?) cooler though I'd had enough of the heat. PK and I loaded up the back seat of the vertical hotrod with our three dogs and drove down to Its beach on the west side. This was Bella's real first time at the beach where people weren't warning us of the dangers of parvo, assorted other dog virus-i and germs. Someone could have warned me about (only the freshest of) fresh dog poo and a warning posted about dog haters sitting, fully-clothed at the dog beach would have been okay by me too. Bella tumbled over the sand, chasing after all sorts of dogs. Guess you could say she's not shy. She ran around kids making sandcastles and even shot between the legs of a 5 year old was digging a hole to China.

Bella does not care who you are -- obviously you're on the planet for her delight (even you dog haters!) The bonus at Its beach was with so many dogs named Bella, Stella, Fella or Old Yella, I had a lot of people willing to watch out for her.

Plus the outing to the beach made me see clearly how fortunate that we don't sniff each other's butts when we greet one another especially on really hot days like today.

Friday, September 24, 2010

Stink Twice

Shelley's post today about eating stinky mildew out of her favorite yogurt container reminded me of another stinky issue that happened recently.

My friend living downstairs had a bad smell coming from her "house" and she told me about this bad smell. My nose doesn't work very well. That sense (along with common) left some time ago. Prior to my cancer diagnosis, I smelled exhaust all the time. I'm not kidding. Some days I smelled more exhaust than others. I could never get the smell of exhaust out of my head - exhaust from a tractor trailer or maybe the proverbial mack truck. I should have heeded the exhaust warning signal but did not. Then once I was diagnosed with cancer, and went through chemo, I stopped smelling exhaust. So either cancer is a cure for the smell of exhaust. Or whenever I smell exhaust, I know I have cancer. I digress.

Back to PK who had this bad smell inside her place. She's thinking the smell came from the bathroom. I try to smell the stink and cannot. She's suggesting it might be septic though septic, I tell her, has a very distinct smell. I've smelled it, and a person can't luxuriate outside their house in a lounge chair overlooking the septic covers and have a great evening if the septic tank needs to be pumped. I mean, it's a smell no one can deny. Septic smell is like heySus, what died in here kind of smell. I'm wondering if the smell is something in the shower or the sink or the toilet while worrying about how much this stink is going to cost me etc. I still couldn't smell the stench and suggested PK find an alternate sniffer aside from me to smell the stench. She had her friend, V (a super sniffer) come to the house and give a whiff. V *could* smell it. (She must be cancer-free.) Then I think PK had her sister D come over to smell it. D could also smell the stink though I have a feeling that D could smell a stink that didn't even exist.

Time marched forward and while sprucing up the stinky space one day, PK picks up some folded towels she had left in the bathroom and there, in between the folded-to-perfection towels was a rotted package of cooked hamburger meat that PK's mom had given her for her dogs complete with little black bugs crawling amongst the detestable rot. Her stink issue solved.

Which sort of gives me an idea on where to check for exhaust should I smell that again in future.

Monday, September 20, 2010

Still More Recipes for Disaster

I spent some great quality time with Hannah this past Sunday. I got the phone call early in the morning, stopped by her house and picked her up. Joy! We drove off to Eric's house to make some chicken tortilla-less soup.


Mid-morning, post-soup making, we left Eric's house, driving back down highway 9 through all the little towns toward Santa Cruz. I asked Hannah if she wanted to go to the pet store with me and she said, "Oh, my gawd!" like she was used to adults flipping on her. I took her OMG to mean yes. So we headed into town to the big pet store to get Bella's nails clipped. Once inside the store Hannah wanted to check out assorted live animals, not the dogs milling around but birds, lizards and kittens. I remember my pet-free days of yore - back when I just had the cat (the one still alive that I did not kill). Back when I had freedom, and did not have to employ the use of a five year old as a pet-sitter while shopping for animal toys and pet food. My memory is fleeting though I hold out hope as I'm aging to recall the good ole days when I didn't have the urge to write about dogpoop or even remember that I could write.


Later that afternoon, Hannah's mom brought Hannah back to my junkhouse to hang out. Upon arrival, Hannah said was she wanted dessert so we got out the sugar-free diet lime jello because it's nutritious and so good for you. After "dessert" we took Bella for a drag walk. 


While on the walk, every so often, Hannah might whine a bit and say quietly "I miss my sisters." Or "I want to go home." I think she has some separation anxiety though only for a bit of time. I usually change the subject by loudly shrieking at her and we get on with our visit. I'm sure that no other adult does this to this child. For example, when Hannah says, "I want to go home" and sounds slightly weepy, my reaction is often something compassionate and caring like "OH, JUST SHUT UP!" and then Hannah will laugh. Remember to add this tip to your list of child-rearing hints. 


When we got home from our walk, I asked Hannah what she wanted for dinner, and talked her into eating a dry, old, lite-cheese, grilled sandwich. Hey, I know what kids like to eat! My recipe for this sure-to-please though rare delicacy is:

  1. 2 slices frozen, stale bread
  2. Shredded lite cheese, stale, preferably out of an air-dried & opened cheese package
  3. Panini maker

Heat panini maker to full broil. Put one slice of frozen bread on the grill side. Heap stale cheese in center of frozen bread. Put top piece of bread on cheese heap (by heap, I mean approx 1T of dry, old cheese.) Close panini maker. Sing Italian panini diddy while waiting for cheese to "melt." Cook sandwich until browned or until you remember the sandwich is still inside the panini maker burning and you are on the back deck, watering plants and hanging out with Hannah and the dog, talking shop. Remove sandwich from panini burner and notice that the cheese is still in the same form as it was when you put it between the slices of bread. Crumpled dried pieces of shredded cheese. Yum.


Serve this extra-crispy, browned, striped sandwich - whole on the only plate you own. (You can't really cut this sandwich anyway so it has to remain whole.) Serve the "meal" with nutritious hot cocoa made from a package you picked up at Eric's house earlier in the day.


Hannah sat at the kitchen table eating her deluxe junkhouse dinner. I sat opposite her trying to eat my home-made tortilla-less soup I'd made earlier in the day where I neglected to cook the vegetables. Each mouthful of soup was like eating a bowl of marbles. Celery, carrots and onions, all hard. The carrots, the worst of the bunch (ew pun!)  


Halfway through eating her sandwich, Hannah looked at me and said "Uh, this is how you aren't supposed to do it."

Lymphedema “Share Your Story” Campaign


What will my letter be used for?
Your letter will be shared with members of Congress and other groups which we are seeking support from for HR 4662.    
How to participate
Send to:  Stories(AT)LymphedemaTreatmentAct.org (replace the (AT) with the AT sign @)
Subject Line:  My Lymphedema Story
Format:  Please place the following at the top of your letter:
  •                 Name
  •                 Complete Address
  •                 Email Address


Length:  That is up to you but we suggest that you try to not exceed one typed page.
Suggested Content:
               
·         Is your lymphedema primary or secondary?
·         What is the cause, if known? 
·         If the result of cancer please specify what kind of cancer.
·         The age of onset.
·         The length of time before you were diagnosed.
·         The length of time until you were able to begin treatment.
·         Have you ever had a problem accessing treatment or finding a qualified doctor or therapist?
·         Has your insurance ever denied coverage for any portion of your treatment?
·         Have you ever had to go without treatment due to lack of insurance coverage?
·         If yes, what were the consequences?
·         How has lymphedema impacted your life?
·         What would this legislation mean to you is passed and how would it improve your quality of life?

(an update from Heather Ferguson who's 3 year old son was born with lymphedema)

Friday, September 17, 2010

Ordinary People

"Ordinary people forgive best if they go at it in bits and pieces, and for specific acts."
—Lewis B. Smedes


An ex-sister in law called our office - (she must want something). I am working alone. I have not spoken with her in over 20 years.

The last conversation(s) we had were around my sister in law claiming that I accused her of having an affair with my husband. Which I had not done - I mean I did not accuse her of having an affair with my husband. I only asked my husband to quit rubbing her (goddamn) feet when she came to our house, plopped her ass on the couch, took her shoes and socks off, and stuck her feet in his lap. (He was probably shocked at seeing normal feet and felt compelled to touch them to see that they were real.)

This was not about feeling insecure, just personally affronted that this woman would be so bold, and that my husband was a clod. I asked my mom what I should do, how the situation should be handled?  After listening to mom, I decided to ask my husband to stop rubbing my SILs feet. Seemed simple enough. He didn't rub my feet -- why should he rub my sister in law's or anyone else's feet? It seemed an intimate act, far too intimate for their relationship - at least the relationship I knew about. I don't know what my husband ultimately said to the sister in law (because I didn't get to witness the discussion, only the foot-rubs) but whatever he said caused a larger issue because this ex-sister in law told family members that I had accused her of having an affair with my husband when all I had done was ask her to stop putting her feet in his lap so he could rub her cute toes feet.

Maybe my creepy toes were jealous though having creepy toes was not the issue. The issue was witnessing (what I considered) a too chummy act between my husband and this other woman in front of me and assorted other family members (our kids) whenever this woman deigned to show up to get her feet rubbed.

When she phoned today she asked to speak with my sister. My sister wasn't in the office today so I spoke with her. She kept asking me how I was, how the family was, what was going on as if no time had passed. Believe me, time had passed. Caller ID displayed her name as Susan Smith, I thought of that woman who drowned her kids in the lake and blamed a black man for the crime so many years ago. I thought, (this caller ID) it figures.

After the drama with this woman, my brother and she divorced probably because she was rubbing a lot of feet, and a lot more than feet on other people who had feet and other parts that needed rubbing. I went into therapy because I felt like a complete nut-case. I felt blamed for being mean because I was a meanie blaming her for something I never said, and she was so helpless feeling blamed for affairs and feet-rubbing. A foot-rub does not an affair make - I know this. By the time the drama ended, our friendship (which had been very good) had essentially been driven into a lake and drowned.

I need to go perform the forgiveness ritual thingie. Forgiveness comes in pretty handy on a Friday afternoon,working alone.

Wednesday, September 15, 2010

Encore

I am stuffing envelopes at work (stimulating work if I do say so myself. I'm grateful to have this work - in Silicon Valley, it's called marketing.). In between envelopes, I am typing these words. I've had some issues brewing from this past Saturday, and other days in-between. I've been taking some time thinking about these issues rather than just spewing words on a page - my usual m.o.

A couple of slightly *interesting things (*in my estimation) -- I belong to the local freecycle and read lots of ads. I've placed ads offering items as well (and if you want, I'd gladly give you something too). I acquired a medium-sized dog crate (for free!) for Bella through freecycle. It's really a great resource, everything's free and it's recycling. Recently on my freecyle there was an ad for a "white girls desk" which made me laugh, thinking that only a white girl could claim the desk. Eventually a white girl probably took it.

Then another small thing came up yesterday while changing my ticket, flying to Oahu from Sah Hoseh (San Jose) in November to February (20feakin11!) (to visit my son) in order to accommodate care issues around mom's upcoming hip replacement.

I read on the Hawaiian air website a note:


You cannot select Hawaiian Coach Plus unless you've selected it for both legs.


I read that sentence and got defensive about my lymphedema. My legs can fit on one plane!


I guess I was still on a roll from that "white girls desk."


I work as a volunteer peer-counselor through Womencare to assist women newly diagnosed with cancer. Our peers our pre-selected for us by the people at Womencare. We've gone through training etc. I have been meeting with one patient for months now. I saw her this past weekend. I will call her "Mabel" mostly because that is a hysterical name.


Initially, (I believe) like so many cancer patients, Mabel had herself dead and buried almost as soon as she heard the diagnosis. She contemplated her funeral, how much she'd suffer, the loved ones left behind. She was fearful walking the path of the great unknown (sorry, couldn't resist that line). She and I would meet at Peet's in Capitola, and talk for hours, talking in-between people interrupting our discussions so they could pet Bella, ask if Bella was a corgi, ask if Bella was a puppy, ask if Bella could be petted, exclaim that Bella was the only corgi puppy they'd ever seen! and if Bella was a sweet lamb, and where could they get a corgi? 


We started our meetings pre-Bella though Mabel was a real trouper to put up with all of the puppy nonsense (as am I) - she must have really been desperate for a, caring, yet still listening ear. This last weekend revealed a change in Mabel's attitude. She told me that she wanted to return to work at least part time because after all the hubbub, fuss and nightmare of a cancer diagnosis, she's realized that in all these months, she. is. still. alive. and needs to live because she's alive. Pinch me, Hay Seuss! 


Early on in our meetings, I'd hear Mabel's desperation and resonate with her self-pity. I told her to try not to forget that she is alive right now. I told her (please) try "not to bury [yourself] on a daily basis," something of which I was often guilty.


When we are in turmoil, we catastrophize the present when in that present moment there is no disaster  -- except that you're losing that moment to the thoughts of a lunatic (you!!). I don't know a cancer patient who has not done this. I don't think I know a human being who has not done this. So I was really pleased that I got to witness the change in Mabel's attitude over a period of months. Even if Mabel dies tomorrow or next week, she has a lot of living to do in this moment, today.


Monday I learned that Christine, who's blog I read, and who occasionally commented on my blog, died. I like to use the word died because passed away seems so sweet and kind and there's not a lot of kindness in a blood clot. Christine was a year younger than me. She had metastatic breast cancer. Once on her blog she wrote about my blog, a lovely short tribute. She said (wrote) that I was ballsy and inspiring - I felt the same about her. Christine knew she would die of cancer. She even wrote her own obituary. Talk about balls. Courage.


So in honor of Christine's short life, and Mabel willingness to live as much of her life as possible now -- in those moments you find yourself catastrophizing, while you still have time, imagine having to write your obituary. Remember -- be ballsy and inspiring because Christine admired those traits in a person. And don't bury yourself every day because just like Mabel, you still have some time to live it up.

Monday, September 13, 2010

Lymphedema Bill Update - HR 4662


This update is devoted to sharing the long list of endorsements for HR 4662.  I know I speak for the entire lymphedema community in expressing my gratitude to the supporters listed below!  If you know of an organization, treatment center, doctor, etc., who may be interested in endorsing the bill please put them in touch with me or send me their contact information. (I suggested Dominican's Katz Cancer Center and WomenCare both local agencies that I have worked with and have been supported by).

And as always, please continue to contact all US Representatives in your state, asking that they co-sponsor HR 4662.





FOUNDATIONS & NON-PROFITS

ADVOCACY ORGANIZATIONS

PROMINENT DOCTORS AND RESEARCHERS IN THE FIELD OF LYMPHOLOGY
Andrea Cheville, MD - Associate Professor Physical Medicine and Rehabilitation, Mayo Clinic College of Medicine
Robert E. Ferrell, PhD - University of Pittsburgh Lymphedema Family Study
David N. Finegold, MD - University of Pittsburgh Lymphedema Family Study
Lawrence Gibson, MD - Professor of Dermatology, Mayo Clinic College of Medicine
Nancy A. Hutchison, MD - Medical Director for Cancer Rehabilitation and LymphedemaVirginia Piper Cancer Institute
Gil Yosipovitch, MD - Professor, Department of Dermatology, Wake Forest University Health Sciences

TREATMENT CLINICS

TRAINING SCHOOLS

MANUFACTURERS

SUPPLIERS 


Grumpy before school Hannah 9/13/10
BTW, Hannah says Hi!

Tuesday, September 7, 2010

On the Road Again

I drove to mom's house mid-Thursday - starting my drive with the convertible top down. I reached Los Gatos and had to put the top up. Way too freaking hot -- high 90s. My skin felt as if it were broiling, compression bandages melted to my thighs, dog passed out in the seat next to mine. Turned on the AC, stopped for gas and then a straight shot to Murphy's without stopping except to get some of those wonderfully yummy peaches at a fruit stand off 120. I took back roads, Jack Tone, Escalon Bellota through fields of GMO corn(?) and fields of pumpkins, tinged with orange. Fall was definitely in the hot air.


Bella slept the entire trip, about 2.5 hours. Didn't budge or whine. Arriving in Angels Camp, I stopped to grab an iced coffee, a bathroom break, and a sandwich for Bella and I to share, eating only the center pieces of turkey and cheese, tossing the bread. We saved half for mom. Outside the car the air was unbearably hot. 


Innocent Bella at mom's
I found mom reading, sitting in her chair. My usually very active mom stuck in a chair with bone on bone hip pain. She feels lonely, sad, old and rickety. Join the club, mom! One problem I soon discovered was that since I had Bella who my mom was happy to meet, she required a lot of attention though I was supposed to be visiting to pay attention to mom's needs too. I had to take Bella out to poop and peep, and make sure she wasn't bored. Thank goodness mom can poop and peep without assistance unless you read the email from Adam's daughter about assisted living. Taking Bella on the trip was absolutely necessary though not the greatest of ideas. I don't know what else I would have done with her -- put her in the home I guess (it's either Bella or mom). In her new surroundings, Bella found several potty spots, both inside and outside of the house. Bella has fleas that are driving me nuts, making her whimper and scratch. Repellent is just another word for flea hors d'oeuvres. Seemed like most of my time was spent keeping track of Bella, her comings and goings, her chasing things, her pooping. 


Mom wishes her kids lived next door instead of hundreds of miles away. She wishes that the kids that lived a few miles away were more attentive. Basically, my mom wishes her kids were someone else. Kids who gathered around her, brought necessary gifts, provide massages, brought flowers, candy and cozy slippers, picked up prescriptions, only until she can walk.  She wishes that all her neighbors could read her mind, come visit, make tea and bring cookies. Mostly she wishes the surgery date was tomorrow instead of having to wait until November. Her surgery date has been put off several times due to other people's issues. Her doctor faking a cancer diagnosis, her boyfriend going blind. Come on, people, RALLY!


Another small annoyance was a lack of hunger (post-wls) on my part. I rarely think about eating (do not get hungry) so long about 7pm or so, in a meek voice, my mom would say, "Jan, I think I'm going to need to eat a little bit of dinner." Her blood sugar was near non-existent. I'd remember that I was supposed to be looking after her needs. I'd be shocked back into consciousness by this quiet voice reminding my self-absorbed brain to function. Between the dog and the lack of hunger, I'm not that great at being a caretaker, either that or I'm intentionally doing things wrong so I won't be called on to serve which I've never done before. That's something guys do as in "Honey, where do we keep the eggs?" or "Do we have any spoons?"


An pre-trained Bella could prevent a return to mom's house very soon (at least while mom's alive, and her s.o. can still see out of his one good eye). Bella needs to learn to come when called, to sit, stay, not poop in secret places, to serve dinner, to stop scratching, and to learn English, so she'll eating that cheap carpeting.




Sunday, my brother came by on his hardley. Due to the middle-age harley mystique, I had decided that I wanted to go for a ride on one of these bikes to compare my birthday ride on the 4 man surrey we rented out in Monterey. The harley goes a little faster. The surrey holds more people. The surrey has fringe on top. On a harley, you'd have to wear your own fringe. 


On the bike with Brother Bill
Seriously, brother put Born to be Wild on the radio. Riding was great fun. My ass actually fitting on the bike was nice too, plus it was wonderful to be out in the open, even more open than the convertible. Brother said next time we'll drive down highway 1 and I can take photos the whole time. I can't wait. I hope we can do that this fall.




The road taken
Bella stayed with mom and helped keep her company while we were away. This extra time with grandma and grand-dog Bella afforded the assurance that when we finally left for the drive home, mom would be extra glad and rethink all that lonely nonsense.

Thursday, September 2, 2010

Rough Road Ahead

I had to take Schulties road this morning because highway 17 was clogged with assorted accidents, an overturned big rig carrying 40,000 gallons of beer careened off the road (oh, no, a mack truck!) and the other road I normally take is still in a process of being fixed by a county that has no money. I think heard rumors that stimulus money was provided for this road fix. Not sure about that.

Schulties dust path 09/02/10
Schulties Road is a dust and gravel path with a few houses scattered on it. I had just washed my car before leaving home because I'm driving to Murphy's this afternoon to spend some time with my mom who's hip surgery is still pending. Rumor has it that she has a list of chores for me.

The central valley is supposed to heat up to 100 degrees or higher today. Should I keep the top of my convertible down? With added layers of compression bandaging to keep the lymphedema from swelling, from the waist down, I'll be completely melted by the time I reach the sierra foothills.

Bella got a bath last night and this morning while I was washing my car, she decided it was time to get in the mud and then jump on my car. Then driving down Schulties with the top down and the dust flying, the car was covered with dust both inside and out.

Dr. Crabby was good with the weight loss. He wants to see me in two months. He said lots of negative things. He says "this will be really hard going forward." "You'll be lucky if..." "Beware." "Danger, Will Robinson."

I don't understand this kind of talk coming from a doctor. I guess I need to lower my expectations. Who am I to have them anyway? Even if things are difficult (which they almost always are at some point), wouldn't a pep talk instead of a dire warning work toward success? I have enough people warning me. GeeSus! I have enough warnings in my own head.

I lost another pound over night. Over the weekend, someone will be taking care of my house, watering the plants and feeding my cat. Things are looking pretty good from here, even through all the dust.