HOPE

I see these hollyhocks out the window as i type - brought them home from Rose Hip Farm in Beverly as little 4 inch plants last summer

It is a huge danger to pretend that awful things do not happen. But you need enough hope to keep going. I am trying to make hope. Flowers grow out of darkness.
Corita Kent

REMIND ME

Routine has never been my strong suit( surprise !!!)
so i need your help in reminding me that the lymphedema exercises are a must everyday.....so far I haven't been keeping up.....
an email or comment gently asking if i'm dong them or tenderly reminding me that i need to remember to do them would be really helpful.....
i can't do this alone and would really appreciate the support ...
blessings and thanks.....

ON WRITING

What is your truth? Ask your heart, your back, your bones, and your dreams. Listen to that truth with your whole body. Understand that this truth will destroy no one and that you're too old to be sent to your room.

Move into your truth as though it were an old house. Walk through each room. See, hear, and feel what it is to live there. Try to love what you find, and remember the words that come to you as you explore.

If you embrace it, if you are faithful to it, your truth will reward you with unimaginable freedom and intimacy with yourself and others. You won't land in world made to order; some people in your life may not like what you write. But those who remain will be allies, people who breathe deeply and listen. It will feel good to be seen completely and loved as you are. As Natalie Goldberg said after her friend found and read a piece of work-in-progress that she had left out from the day's writing, "I feel good because I don't care that she sees how I really am. I'm glad. I want someone to know me."
—John Lee, from Writing from the Body, excerpted from Art as a Way of Life.
from today's newsletter from HERON DANCE a beautiful, inspiring site...

ALL CLEAR !!!!

yesterday's mammogram and ultrasound were clear !!!!! hooray !
It was scary waiting for the dr. to read the tests......thankfully i go to a breast center where they do the test and the dr reads it on the spot.....
today was the first time i worked in the kitchen with a rubber glove..... i hated it....!!!!

The New Challenge

30 miles down the freeway
windows open
wind blowing freely through the car
arm bare feeling the wind
trying to really feel it as i head
to the lymphedema specialist
to be fitted for a sleeve
a sleeve they say
forever
all day every day
tight
hot
in the way
uncomfortable
putting it on alone is a nightmare
rubber gloves with their little bumps
help to smooth it up to my shoulder
new rules and routine
come with it
wash it every night
cream on the arm
to prevent skin breakdown
which is possible and ugly
no lifting anything over 10 pounds
wear gloves in the yard, the kitchen
anywhere where a scratch or cut is possible
me who has everything in sight
all over me
and despises wearing gloves
i want to feel the dirt, the plants
the sand
the trees
the water
the wind
i wear it for a week
to see if the compression
in the wrist is enough
to take the hand and finger swelling down
if not
then we add the glove which is awful
and more limiting
pray with me that it doesn't come to that
the ride home was frustrating
confined covered uncomfortable
all that for over $100 which medicare won't cover....
coming into the house hot and tired
my first instinct is to rip it off
and i started to
and then remembered
i can't
or
shouldn't
if i want to take care of myself....
one more mountain to climb
with legs that are weak and weary.......

JOY TO THE WORLD

everyone was here sunday - before vacations start and everyone heads for different parts of the country....Of course the wading pool was the big hit as was Nana's wig.............the ripe cherry tomatoes provided Liam his own private seat where he consumed vast amounts of them...... I iam so grateful for this kind of joy to help me forget my body that isn't working really well yet......

HAPPY BIRTHDAY TIM !!!

it's hard to believe I have a 40 yr old....!!!! I am so glad he was born and celebrate all the blessings he brings to the earth as a husband, dad, son, brother, friend, artist, storyteller,writer,photgrapher and much more.... his gentle soul has brought me nothing but joy all 40 years..... i am utterly grateful every day for his presence in my life....
HOORAY FOR TIM ...!!!

DOWN DAY

i have felt sick all day - not sure why...nauseous and shaky and weak.....it's very hard because i expect to feel better each day and when i don't i get very down...going with the flow isn't one of my strong suits......i even cut my lymphedema apt short as i was so nauseous....

FATIGUE

I've had a rough couple of days fighting fatigue probably due to my overdoing it in general.
I drove to S.F. sunday - the longest drive so far and yesterday took my first dance lesson in 9 months !!!! The 45 minutes was very difficult as the Polymyalgia is acting up and the cancer prevention medicine for the next 5 years causes joint pain and the broken shoulder pain is still pretty strong...so i've been sleeping 11-12 hours and still don't want to get up..... I'm not sure how long the fatigue from radiation lasts.....i hope its' over soon....
the yard and the house are very cluttered with things to sort and put away and i just can't get to it.....
and the heat doesn't help...
so today is my day to whine......and not feel good all over....

Lymphedema

I'm going for treatment twice a week, wearing a makeshift compression garment till i get fitted with a "real" one and am supposed to be doing exercises every day... 6 different exercises 15x each to clear the nodes in the neck, armpit, groin, and down the side of the body..... routine is very hard for me and so it will be difficult to get in the daily habit. Also the broken shoulder aftermath is still very painful and difficult to get to work very well. I've decided on the arm sleeve and gauntlet (looks something like these pictures - I haven't actually seen the real ones yet...) which is less expensive and bulky but needs to be worn more often.... I am really distraught thinking i need to spend the rest of my life wearing this damn thing.... and Michael Moore is so right....the health care system sucks....Medicare won't pay for these and my secondary will only pay a small percentage depending on where i buy it. I am going to see a woman in Morgan Hill who is a specialist in fitting these garments and i hear they are quite expensive....

Fun at Nana's

MORE JOY

Ben spent the day yesterday - we fingerpainted and had to get in the sink to wash off.... flooded the sand box, tried the potty to no avail... out of the blue he asked if he could wear Nana's wig so he donned that for a while...he was a joy to have around and didn't give me a moment's trouble....he even took a nap on "nana's big bed"..... I slept really late today - as my energy level is still pretty low but it was worth every second..... Am still experiencing numbness in my fingers and toes.... no one is sue if it will ever go away...i can notice the change in trying to type....it's much more of a chore....

Nana's Camp

Liam has been here camping out at Nana's to fill up a week of school vacation. We had a great time, although I must say a 6:30 a.m. rising time is not my regular schedule !!! That part was hard on the body. He spent one day visiting his uncle John for some serious sports and swimming.
We went to the museum, did art projects, read Spanish books (over my head but he does really well), hung out in the back yard with a big wheel, baseball, "volleyball"
My body is still not itself and the heat made it hard, but I loved every second of it.....
He is the sweetest, gentlest soul and brought me only joy ....
Still haven't decided on a compressions garment so wore a makeshift one that the therapist gave me....it was really hot...

I have been really sad all day missing him.....

Breathless beauty

these greeted me this morning....

another kind of sleeve

here is the other option for a sleeve - i have to make a decision for this or the compression sleeve....(see previous post)
this one looks likes such a monstrosity...it's to be worn at home night and day but not when i go out..... it just looks like it will limit my use of the arm quite a bit although they say it is not heavy....
this just sucks......

More about lymphedema

Lymphedema is the accumulation of lymphatic fluid that causes swelling in the arms and legs. __Edema occurs when venous or lymphatic vessels or both are impaired. When the impairment is so great that the lymph fluid exceeds the lymphatic transport capacity, an abnormal amount of protein fluid collects in the tissues of the extremity.__Untreated, this stagnant, protein rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen through the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in various infections. __A chronic inflammatory condition stemming from this accumulation of fluid eventually results in fibrosis (hardening) of the extremity tissues.___Medicare & Major Insurance Carriers recognize the BioCompression Sequential Circulator Lymphedema Pump as safe and effective for the treatment of lymphedema.
COMPRESSION THERAPY FOR TREATMENT OF LYMPHEDEMA, VENOUS INSUFFICIENCY AND WOUND HEALING
Although Lymphedema has always afflicted humankind, little was understood about the disease. Only recently have clinicians begun to seriously focus on it's treatment.The lymphatic system, an offshoot of the circulatory system, develops embryologically. Fluids and protein, lipids, fat soluble vitamins, and immune cells circulate within lymphatic vessels and nodes. If lymphatic drainage is impaired, edema and protein collect in soft tissues providing a natural medium for infection._Lymphedema is the swelling of body parts, most often an extremity, caused by the abnormal accumulation of lymph fluid.Lymphedema is an accumulation of lymphatic fluid that causes swelling in the arms and legs. Edema occurs when venous and/or lymphatic vessels are impaired. When the impairment is so great that the lymph fluid exceeds the lymphatic transport capacity, an abnormal amount of protein fluid collects in the tissues of the extremity. Untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen through the transport system, interferes with wound healing and provides a culture medium for bacteria that can result in various infections.
15% of all women with breast cancer will develop lymphedema over the course of their lifetime and that lymphedema resulting from prostate cancer is on the rise.
_Lymphedema is a chronic condition and often begins with a swelling in the hands or feet. Early diagnosis and treatment improves both the prognosis and the condition. Left untreated, the limbs become more edematous and the skin hardens, losing its elasticity (fibrosis). Moreover, untreated lymphedema leads to infection and sometimes, irreversible complications.
_Compression must be applied to the limb to reduce the swelling. Surgical compression stockings or sleeves can apply compression. Manual Lymph Drainage (MLD) is performed by specially trained therapists, utilizing a gentle massaging technique in conjunction with a pumping motion. Some treatment centers use a special bandaging technique.

_

Compression sleeve

my first treatment was yesterday - i liked the practitioner and it was a gentle manipulation of the neck , shoulder, arm and hand...moving the lymphatic fluids...
there may be a Plan B for a sleeve a very different kind that is foam and quilted that i would wear 24/7 if i'm home and could take off when i'm out...i can't find a picture of it on the web - it's evidently an invention of someone local...
it's very bulky monstrosity so i have to make up my mind and get measured thursday for some kind of something.....
the thoughts of it are very disheartening, but there is no choice if i don't want this to get worse which can be very dangerous.........
damn this roller coaster ride.....it's exhausting...

LYMPHEDIVAS!

if i have to wear a sleeve that goes from mid finger to upper arm.... i might as well check these out - don't you think ???!!!

Another mountain to climb

a visit to the Lymphedema specialist to assess the condition was very traumatic for me....
they gave me reams of information to read.... risks, treatments etc...it's pretty overwhelming....
once you have this condition it appears it is for life.... there is no cure just treatment which consists of physical therapy 2x weekly for a few months to "move" the lymphatic fluids that are stuck and cause swelling because lymph nodes were removed during surgery.... then i'm to learn the exercises to do myself.
the worst part is having to wear a compression garment pretty much day and nite to keep the swelling at a minimum....
lifting, luggage, purses, grocery bags, flying any kind of gripping, etc. are among the list of "high risk" activities they gave me... - no ice - no heat.....which i've been using for the pain of the broken shoulder which some days is pretty awful.......hand must always be protected with gloves for gardening or cleaning because of the risk of infection.
I do have 2 friends who have had this for years and they manage quite well and tell me "there's all the things they tell you and then there is reality....- but the compression garment is important and i'm dreading it.....
i need to do a lot more research - treatment starts next week.....
i had a huge meltdown after the session having to face another challenge....
you can find out a lot about it online but i was overwhelmed with what site to link so you're on your own if you are interestested....
one more challenge to discourage me.......
GOOD NEWS i went to the dance party last nite and danced 4 dances !!!!!!!!!! i'm and exhausted but i did it....

JOINT PAIN

many of you know that quite a while before the cancer i was diagnosed with PMR which was causing a lot of joint pain. The rheumatologist told me that the chemo would help the condition and i would be able to cut back on the prednisone....it did seem to calm it down and i did cut back on the prednisone.
Well now that the chemo is over i am in the throes of a real PMR flare-up or suffering the side effects of Arimidex which is the 5 year regimen to prevent recurrence. Joint pain is one of the main side effects....
whichever it is, i am stiff and in pain......and do not want to up the prednisone as it has its own ugly side effects.....
tomorrow i go for an evaluation of the lymphedema......
is there any end........................?????? I'm more than ready for one....