THE C WORD

CANCER.

lifelong friend, cherished friend
chosen family, sister friend
godmom to my first born son
my dear friend has just been diagnosed with cancer

no. no. no.
i am sad
i am mad
no. no. no.

why? why her? what next?
she's endured so much already,
has lived, is living through so much heartache, loss and pain
oh, Jesus, stop the rain
how much must one be called to bear

not her. not now. not ever.
i silently scream
no. no. no.
a tidal wave of emotions crashing over me

i know how a diagnosis turns your world upside down
in the blink of an eye normal ceases to exist
a single moment in time changes everything
and you are shaken to your core

free fall thru timeless space
past, present, future
soliloquies of memory flashing by
forced to face reality
the fragility of your own mortality

i ache for all that is to come
for the battle that lays ahead
for the pain, the heartache, the loneliness
the long dark desert to sojourn thru before the dawn will break

i ache for what her boys must face
i grieve for all that they must feel
cancer striking like a thief in the night
oh lord, it takes my breath away

phoenix rising from the ashes
the fire of life refines, renews
she will beat this, i have no doubt
this precious family will rise above

i have faith, i have hope
though tears will fall, fear will grip
His grace, His peace, His strength
will lift them all to heights anew

come alongside, lend support
enter in my own frustration
unable to do more, be more
taunted by my limitations
i feel useless, helpless

silence! to my inner critic

i can be a listening ear,
i can be a prayerful heart
for this one i hold so dear
engage in battle thru mighty prayer

searching, pleading, soulful prayer
sweat and tears co mingle
fervent, burdened, earnest prayer
oh lord, hear my cry

pray for peace in this fiercest storm
pray for strength to endure
pray for grace for each and every day
pray for solace and for comfort

pray for tender hearts to stay true
pray for resilience, indomitable spirit
pray for them to keep trusting you
pray for healing and for wholeness
body, mind and spirit

prayer is stalled, barely whispered
anger rising in my heart
i am mad
why god why
no answers only questions
pounding in my ears

and then i hear Him
in the midst of my fury
His love, His peace, His voice beseech me
i love her more than you can ever know
as i have carried you
i will carry her

His still calm voice commands
surrender her to me
the time, the place, the here and now
the grief, the pain, the sorrow
trust me with her tomorrow

relinquish anger, release your worry
submit this dear one to my care
trust me with her
just as you trust me with you



please join me in praying and trusting for healing for my dear friend Jennifer, her husband, and her 4 sons.

THE ANTICS OF MY LYMPHATICS

for your Friday nite viewing pleasure:

swollen, puffy eyes...

believe it or not, this pic was taken 4 hours AFTER waking!

eek! isn't that a lovely site to encounter unaware.

during one of my in office visits with DR H, he diagnosed me with lymphedema. as a result he prescribed lymph massage and deemed it very necessary and needed in order to assist my body in effectively detoxing. i have been going for lymphatic massage since October. at the time he prescribed it, i knew nothing about lymph massage or the lymph system in general. my understanding of the lymph system was limited to knowing that we have lymph nodes and that they assist in fighting infection.

i have since learned a lot about the lymph system. it is really quite fascinating. the lymph system plays a very important role in detoxifying our bodies and maintaining good health. furthermore, having a healthy lymph system is absolutely vital to strengthening your immune system. the more i've learned about the significance of the lymph system, the more i've wondered why the poor little lymph system seems to be largely ignored or neglected by health care professionals.

the following is a quick summary of the lymphatic system:

"Lymphedema is characterized by edema and blockage of the lymphatic system.

The lymphatics have three very important functions, according to Dr. Gerald M. Lemole, Chief of the Department of Thoratic and Cardiovascular Surgery, Deborah Heart and Lung Center, Browns Mills, New Jersey:

"First of all, the lymphatics return protein to the bloodstream. As much as 50 percent of our serum protein can leak out of our bloodstream during a 24-hour period, and it is the job of lymphatics to return this protein to the blood. Second, the lymphatics clear the spaces between our cells and carry away toxins and foreign particles such as bacteria, large proteins, cholesterol, and viruses. We were taught that the liver and kidneys clear away toxins, but it is actually the lymphatics that clear away the fluid that bathes each cell of our body. Third, the lymphatics are an integral part of our immune system. The white cells, called lymphocytes, circulate in and out of the lymphatics and help destroy foreign particles like bacteria, viruses and parasites." (http://www.uhealth.net/article3.htm)

DR H refers to me as a cesspool of neurotoxins. my cesspool status means that my lymph system is very clogged and is stagnant. as a result i have developed fibrosis in my abdomen. "Fibrosis is the formation of fine scar like structures within tissues affected by lymphedema. the fibrosis create obstructions and make lymph drainage even more difficult." you can learn more about the lymphatic system and fibrosis here: http://www.lymphnotes.com/cat.php/id/8/

in the last couple of weeks, i've had to slow down on going for my lymph massages. with the inclusion of the million dollar drug alinia to my treatment protocal we just can't afford to keep up pace with a lot of my therapies that are 'out of pocket' expenses. this includes my lymph massage therapy. i'm still going but have had to cut back on the frequency with which was deemed necessary.

as a result my bod is rebelling.

i am astronomically swelling.
sometimes to the tune of 10lbs in one day.
my lymph therapist has me weighing myself at regular intervals during the day in order to keep track of how severe my lymphedema is.

on average i am 'gaining' about 8lbs daily.
my record is 10lbs in less than 12 hours.

there is no rhyme or reason to my swelling other than that it is evidence that i have an active, ongoing infection and a diseased and poorly functioning lymph system.

and my dough boy, michelin man bloated status is very different and not to be confused with PMS.
Oh no, no, this is very different.

sometimes i gain weight overnight - i am heavier and puffier in the morning than i was the night before. and vice versa. and even weirder than that is that the swelling moves around my body. all 8 to 10lbs of it. oh yes, it is not 8lbs of fluid evenly dispersed over my body, it tends to be 8lbs of fluid all in ONE area and then it all migrates to another area - sometimes within hours. sometimes over several days.

it is one hek of a strange phenomenam.
and definately grossly uncomfortable.
and annoying. and irritating. and frustrating.

and it bugs me that it bugs me.

really. in the big scheme of things, who cares?
considering all that i face in this fight, why am i bugged by my puffy face?
considering the burdens my loved ones shoulder, why am i perturbed that my shoulders make me look like a quarterback?
considering all the pain and heartache in this world, and i've got the nerve to belly ache about my swollen abdomen?

i mean who cares if my face is puffed up - at least the puffiness actually helps to fill in fine lines; or who cares that i'm living in stretch pants because my butt and my legs are so swollen - at least the merger between my butt and thighs makes my legs look longer; or who cares if my shoulders are so puffy that i look like i'm wearing those gargantuan shoulder pads from the 1980s - i think i recently heard that 80s fashion is making a comeback;

or who cares if i get "the muffin top" on the days i try to squeeze into my jeans - i should just be grateful on those days that i'm well enough to at least attempt to wear jeans. (and did you know the muffin top look can also be attained by stuffing fat feet into ballet flats?) or who cares if my neck is so puffy that i look like a rodent hoarding food in its pouches - at least Walter (our family hamster) feels like he is living with his own kind;

"my hamster pouches"

or who cares if my head is so fat that none of my baseball caps fit anymore - after all, i don't need to hide my greasy hair, in my condition, i wouldn't dream of leaving the house for fear of scaring small children.

and speaking of children...
who cares if i look like i'm 5 months pregnant...the upside to that? well, i learned that another lymie friend of mine is dealing with the whole bloated belly, faux pregnant look too!

it is always such a comfort to learn that you are not alone.

and the icing on the cake?
my puffy, bloated lyme friend is a MAN!
oh, yes, oh yes! my buddy Peter thinks he looks pregnant too!
and its really bugging him too!

if you ask me it was pretty ironic to talk to a man about swelling and bloating - and super satisfying to have him moaning and groaning about it right along with me.

so i guess i can conclude that there is an upside to everything...even the antics of my lymphatics.

THE LATEST BATTLE PLAN

Had my monthly phone consult with DR H last Friday.

This post will probably be of more interest to my lymie friends however any conversation with DR H tends to be somewhat entertaining as he does have a sense of humor. Ironically, his humor is very similar to my hubby's.

During my 'in office' appointments, those 2 tend to share great big guffaws, which is simultaneously entertaining and irritating. Actually, during our in office appointment in January, there was all of the sudden the sound of a duck quacking. Turned out it was the ring tone on DR H's cell. Oh my Graham was so impressed. And those 2 got off on a whole tangent, swapping dumb duck jokes. And me? Sheesh! Hullo? Remember me? i'm like the forgotten space cadet fading away in the corner... but honestly, I do appreciate his humor -for the most part!

(BTW, guess who's got the duck ringtone now? yup, Graham.)

The following is a very abbreviated version of what was discussed during my phone consult with DR H and the latest battle plan:
(DR H's input/responses are in bold, mine are in italics)

(My apologies for the non-friendly reader layout - i copied and pasted my phone consult from a word document so the fonts and layout are pretty messed up.)

********************************************************************************************

Quick time line summary:

Feb 24 – Mar 3 Severe Herx – major flare of all symptoms

Feb 23 – 26 Mistakenly infusing 500mg bags of sterile water for 3 days – which may or may not ? have contributed to such a nasty flare of symptoms

Feb 26 Had lab tests done – reveal low WBC – maybe had a bit of the flu too (oldest son was home sick with flu during that time)

Mar 9 – 21 Much progress during these 2 weeks– overall quality of life improved dramatically - Quantity of "good" days not more, however Quality of good days was dramatically improved

Mar 9 Start ALINIA – 1pill/day

Mar 16 Ramp up Alinia to 2 pills/day

Mar 22 to present

Herxing again…extreme fatigue, nauseau, lethargy, ringing/buzzing in ears, shortness of breath

********************************************************************************************

Top 6 Current symptoms – noting which is most severe

· Ringing and buzzing in ears

· Nauseau

· Swelling and bloating – full body – will gain up to 10lbs in 12 hours – lymph massage therapist says I am the most swollen, boggy and puffy I have ever been

· Hypoglycemia episodes

· Shortness of breath

· Extreme fatigue

What has gotten better

-Less night sweats- weirdly have moved from being concentrated around head and neck area to abdomen

-No migraines since starting IV Zithromax

-Better quality of life during ‘good’ days

List of current medication, herbs and vitamins

· IV Rocephin 2g/2xday – 4days/week

· IV Zithromax 500mg/day – 5 days/week

· Alinia - 500mg/2xday

· Pentoxifylline 800mg/day

· Diflucan 200mg/ day

· Bioresource Detox & Drainage ¼ tsp/2x day

· Enula 15drops/2x day

· Mundipur 1 tsp/2x day

· Toxex 1/2tsp/2x day

· Red Root 15 drops/2x day

· Wobenzyme 25pills/2x day/2x week

· Boluoke 2pills/2x day

· Mannatech Plus 1/3x day

· Mannatech Ambrotose Powder – 1tsp/day

· Resveratrol 1/2x day

· Medcaps DPO 2 tabs/2x day

· Quercetin – 2tabs/day

· Vitamin C – 3 tabs/day (1000mg tabs)

· BIO K CL1285 (probiotic 98g/day)

· Cod liver oil - over abs nightly

Additional questions/and or concerns for doctor

A) Very frustrated with "antics of my lymphatics" – can only afford to do 1 massage/week now – but have added in rebounding and lymphdiaral cream and yet I am still astronomically puffing up – anything else to help?

Seriously, DR H, I have astronomically blown up!!!

Oh, really. That's great! I've been thinking of putting together a football team. I need a line backer. you could be my linebacker. Just how huge are you?

Here's some things we can do to help deflate you:

1. 40 drops red root/4x day
2. Itires 1/2tsp/2x day
3. begin putting castor oil on lymph nodes as well as con't with lymphadiaral cream
4. Up Wobenzyme to 50pills/day/7 days per week
5. will send specialized lymph brushing system
6. Start infrared saunas or colonics

(EEK! COLONICS? Are you serious?)

Yup. Know anybody with a long garden hose?

(Ha ha. very funny. not.)

I highly recommend it for you however if you are totally not comfortable with it then start with the infrared saunas and we'll monitor your progress...BUTT (lol) BUTT I think colonics could prove to be the missing link in keeping your detox moving.

B) What is most effective way/dosing for Alinia ?

1. Immediately bump up to 3 pills/day

What kind of reaction/response can I expect?

You can expect the following symptoms to get worse before improvement begins:

1. buzzing/ringing in ears,
2. increase in quantity and intensity of shortness of breath episodes
3. blurred/double vision/blind spots will get worse

Long and short of it is to expect these symptoms to get a lot worse again before improvement is "seen"

Lovely. I suppose that means my ability to drive will be put on hiatus again.

Yup. That's tough. Hang in there. it'll get better. I promise.



C) Finally was able to fill Albendazole Rx – how/when to implement that?

Once you have been on full dose of Alinia for 2 weeks, start the Albendazole 2pills/2xday for 10 days, then call me and we'll reassess. Have I mentioned I'd like you to start doing colonics? {insert evil snicker}

D) Wobenzyme seems to have weird effect on my eyes – makes my pupils dilate huge…what is up with that?

remember the job of the wobenzyme is to clear out your clogged lymph channels. as it unclogs your channels, neurotoxins are being released into your blood. you are so full of toxins and the dilation of your pupils is evidence of these toxins finally being released into your system.

E) Taking ½ tsp/2x day of Toxex…but feel like I have better results with the mundipur…am taking 1 tsp/2xday of mundipur…should I keep taking both?

absolutely. keep doing both.

have i mentioned yet that i think you'd benefit from doing a series of colonics?

la la la la la. i can't hear you.