Saturday, June 30, 2007

Breathless beauty




these greeted me this morning....

Wednesday, June 27, 2007

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.

_

Tuesday, June 26, 2007

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...

Sunday, June 24, 2007

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 ???!!!

Friday, June 22, 2007

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....

Wednesday, June 20, 2007

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....

Monday, June 18, 2007

ALL WET



Ben decided daddy needed a shower for Father's day....

Saturday, June 16, 2007

UNEXPECTED "HANDICAP"

because i do so little handwriting, i hadn't noticed how difficult it is to write "nicely"with the neuropathy which is tingling and numbness in my hands - a side oeffect of chemo....
When i was trying to write a note today, it was difficult to form the letters neatly....the numbness is pretty strong in my left hand and of course that is my writing hand....
round and round goes the merry go round...
i wish i could get off.....!!!!

Friday, June 15, 2007

A LITTLE EACH DAY

My energy is a little better each day.... i see to be able to remain upright for longer stretches...the new medications seem to be ok....so far no noticeable side effects except for the joint pain from the cancer prevention rx.... i already have joint pain so it's just more of the same....
my breast is a mess with blisters and peeling....High 90's temperatures makes for even more discomfort.....
my shoulder isn't healing as quickly as i'd like -still can't do much with that arm....

Tuesday, June 12, 2007

IT'S NOT OVER TILL IT'S OVER!

just when i thought i'd have some time for me, i now have 2x weekly appts set up with a lymphedema specialist to treat this before it gets any worse.
one of the difficulties is that the arm that has the broken shoulder and is in pain anyway now has this added issue.....
I've been experiencing a lot of pain in the shoulder that is healing, so fo course am now worried about the treatment for the lymphedema which involves some exercises.
there is no cure for this condition and it can mean " a commitment to a modified life style"
However it can be temporary so pray with me that this is my situation....

Monday, June 11, 2007

PILLS, PILLS AND MORE PILLS

today i start 3 new medications which raises my anxiety level immensely
1 is a 5 yr regimen of an inhibitor to prevent cancer recurrence
1 is to calm the hot flashes which is one of the side effects
1 is a new rx for panic attacks
I am calmly saying "these are only little pills meant to heal your body and they will work for you not against you" but it is hard....
I hate taking pills - especially new ones....
wish with me good luck and healing with them.....
i am extremely tired from the weekend - sat nite event and a baby shower yesterday....so i've rested most of the day....
the breast burn is beginning to calm down and heal.......
i want to go out and work in the yard and go back to the Y program....but don't have the energy

Sunday, June 10, 2007

A NITE OUT....

thanks to my friends nicolas and darius i had my first big nite out at the AIDS COALITION blk tie gala last nite. i rested most of the day and then donned my wig for its debut at any kind of event.
I sat most of the nite and had a few shaky moments but was well taken care of....
i even danced one rumba....
i'm extra tired today but am glad that i overcame my anxiety and went out.
i hope the anxiety gets to a point that i can go out by myself soon.....

Saturday, June 09, 2007

A thought for today....

This was posted on Heron Dance - one of my favorite web sites. They have a wonderful free newsletter that comes in your email with beautiful art and poetry.


If someone says, "To be enlightened you must
fast and pray all night"
Have dinner and go to bed.
If you see a sign, "This way to salvation,"
run the other way.
If somone says, "This book is the truth,
you can buy it from me."
Take your money and buy grapes and roses.
If someone says, "He's talking tonight,
thousands will be saved."Go for a walk...listen to the birds
and watch the clouds, and leave
your backpack, your Bible and your Buddha
under a tree and hope
they will be gone when you return.
Where we are going you can't carry anything,
not even your name.
If there is logic in the above,
be afraid, it's a lie.

But if you feel something in your chest
as beautiful as the grass beneath your feet,
be grateful...open your arms
and forget everything
you ever thought you knew.

John Sqaudra excerpted from
This Ecstasy

Friday, June 08, 2007

A FREE DAY !

no doctors, no machines, no poking or probing.....
it feels really strange - still hard to believe....
i think i will treat myself to a manicure and pedicure - the least i can do to celebrate !!!!!
Here's to pink toes !!!!

Wednesday, June 06, 2007

ONCOLOGY FOLLOW UP

Today was the follow up visit with the oncologist to learn about the next steps..... a 5 year regimen of a cancer preventative drug and a drug to help with the hot flashes which are one of the side effects of the prevention drug.
There are other side effects which i hope i can miss.....
I have to see a lymphedema specialist as i am showing signs of swelling in my hand and arm.
It will take about a month for my blistered,burned breast to heal and then it's off to mammograms and ultrasounds to be sure all is well....
my energy is growing a little bit each day....i am grateful for each little bit...i think the minute and a half swing dance gave my body and soul a much needed boost.....
i am still resting good part of the day even tho i would like to be out and about "doing" things...
i feel like i needed to have a ritual or celebration for the end of this treatment phase....but alas, there was a shortage of people and places to celebrate.....
in one crazy sense there is quite a let down and i'm feeling it.....
the oncologist was full of admiration and hoorays for me as she said that lots of her patients don't make it through the treatment..they give up.....and I didn't !!!!!!!!!!!!HOORAY FOR ME

Tuesday, June 05, 2007

HOORAY FOR ME !

I DID IT !!!!!!
last radiation treatment this morning.....
the letdown is exhausting and it really hasn't sunk in yet.....

Monday, June 04, 2007

SATURDAY SOUL FOOD




These are a few things that people said that lifted my soul on
Saturday...........
it's so good to see you here....
I love the hat
you are the most beautiful bald woman i've ever seen
you don't need the hat... you look great without it
thank you for all the light and joy you bring here
we've mised you so much
you look amazing
you are beautiful
etc...etc...

I felt good enough on Sat to get "dressed up" and go to the dance studio to watch my friends dance at the Medal Ball.
During one of the breaks the judge asked me if a wanted to "do a little swing"and I DID IT !!!!! not for long but just enough to know that my body remembers how to dance....
she said "you know you're a great dancer !!!"
It was filmed !!! and is on YouTube - but you have to watch abut 5 minutes of other people as it's the last clip
It was a wonderful afternoon although sad as i wasn't dancing.....but just watching lightened my heart....

Friday, June 01, 2007

NANA'S WIGS





Nana's wigs provided for much entertainment on Sun as Ben an Ronan ran around the house and yard laughing loudly....they also checked themselves out in every mirror in the house.Of course without clothes!!!! their favorite way of being in the world is "i want to be a naked boy..."