Wednesday, 26 August 2009

Armadillo: crunchy on the outside, soft in the middle.

 You know that tired old cliché – it never rains, but it pours? I was thinking about that a while ago, when England was trying very hard not to have a summer. The days weren’t cold, but they were cloudy and grey. There was this mean little drizzle which kept everything just a bit damp and a tiny bit dismal, and which I found irritating in the extreme.

grey.days

Why - I muttered crossly to myself - doesn’t it just monsoon down in torrents, with the obligatory eardrum-splitting claps of thunder and dazzling flashes of lightening as if it really means business, y’know?

stormy.sky

Then the empty clouds can disperse having done their job properly and allow the sun to have a turn at making everything gleam and steam and shine again.

after the rain 

So much for my silly rantings – it did indeed pour, but it most certainly wasn’t what I had wished for. See, the problem is that about a year ago I had a blood test to determine whether I had a tropical, water-borne disease called bilharzia. (It was possible I could have picked it up while swimming in the Nile (below) or sailing on Lake Victoria.)

Murchison-Falls-2

They found no indication of that, but they discovered instead that I have a disease called myeloma. Here’s the rub - normally new cells are produced to replace old, worn-out cells in an orderly, controlled way. However, in myeloma the process gets out of control and large numbers of abnormal plasma cells – myeloma cells – are produced. These fill up the bone marrow and interfere with production of normal white cells, red cells and platelets.  The myeloma cells usually produce a large amount of one type of abnormal antibody called paraprotein. This paraprotein cannot fight infection effectively and often reduces the production of normal antibodies.

Mine is still what they refer to as ESMM – early stage multiple myeloma. Research has not as yet made it entirely clear whether it’s better to start chemotherapy right after the diagnosis or to delay the treatment until symptoms become obvious as the disease progresses, so my consultant has decided to wait - mainly because early treatment, although beneficial in some cases, may increase the risk of acute leukaemia. As well as periodic blood-tests, I have to have regular bone scans or x-rays in order to assess the progression of the disease. It was during a CT scan two weeks ago that the radiologist spotted scarring of the lung tissue and some swollen lymph glands.

And so the storm began! More blood tests, more scans and then finally, on Monday, I had to have a bronchoscopy. After this up close and personal examination of the lungs and lymph glands, it was pronounced that I have something called sarcoidosis - which is a bit like fibrosis. Apparently, it’s not known what causes sarcoidosis. Research is ongoing, but it is believed that it may be caused by something in the environment or it affects people whose immune system does not work properly. The latter is probably the cause of the disease in my particular case.  In some instances of sarcoidosis the heart can become enlarged, so to check this I have to go for a echocardiograph tomorrow.

So, what with all that hoogiemaha – and the sale of our house – it really has been pouring these last few weeks - metaphorically speaking, of course!  The lesson is, dear bloggy friends, do be careful what you wish for!

first tree.southdown

I deliberated long and hard about telling y’all about this, but since I’ve not been around in the Blogosphere very much lately, I thought I’d better come clean lest you think I’m just being lazy and/or rude for not having visited your blogs more regularly of late.

I’m really rather a private person, so this ‘confession’ makes me feel all squirmy and acutely, pinkly, embarrassed. Please, please don’t feel you have to tread softly. I just wanted to let you know the reason why sometimes I may disappear from Blogland for short intervals.  I've totally come to terms with the disease (after all, I've had a life that many can only dream about - I've been very, very lucky) and I am determined just to keep on keeping on....doing as many of the things I love as is humanly possible!

reflections.4

Through this blog, I’ve met and made friends with some of the most exceptional people ever, and every step of the journey has been above and beyond all expectations. I started the Aerial Armadillo – crunchy on the outside, soft in the middle (get it?) - when I found out that I had myeloma.  I wanted a place to record our adventures and expeditions; to document my thoughts and dreams and to log my paintings and photographs so that one day our grandboys can read about the extraordinary life we’ve had….and are still having. And on the way, I met you….and you….and you. So it’s all just marvellously wonderful. Truly, it is.

theaerialarmadillo

My next post will be all about The House on the Beach at Blogland Lane – so see y’all then! In the meantime, I’m sending jet-propelled hugs to you all, wherever you may be.

44 comments:

Holly said...

First, two questions: Did you do that last shot of artwork? And, if so, can I have it?

Next, I can't begin to tell you how hard it is to read that you have all this stuff going on in your charmed life.

But, I want you to let go of the embarrassment of telling us these bits because you're actually helping all of us who read you. It's good to be reminded, that no matter how charmed someone else's life may be, it's still got it's very hard nasty parts.

We all need to remember that.

Next, I have a friend who has sarcoidosis. Like you, they can't say where it's come from or how it starts. Just one day, there's an issue. He was diagnosed over 10 years ago. He is still with us; some days are harder than others, but he's still here and doing well.

Next, your blood condition sounds very similar to a condition that my cousin is living with. One of the things the experts at Johns Hopkins University suggested to her is that she move to a warmer climate that is consistently warm. It seems the changes in temperatures, especially to the cool, moist ones has a negative effect on her ability to regulate the blood.

So, I don't know that this will help you, but I do know that she must be careful, more than the rest of us, but she is very happy and doing pretty well.

And, those are the parts of my life that I want to leave with you today. The things that say, YES, please do carry on.

So many of us would now feel lost without you. This is what happens when you take in strays.

HUGS to you, Dear Tessa and I put you on my list of those in need of Reiki energy.

lakeviewer said...

Hello Tessa, and good to have you back, checking in now and then. Yes, we do miss you. We miss the amazing way you paint with words, the stories you recount, the view of a world many of us will never see.

And like you, we all came to blogland in search of a way to bear witness; a trip down memory lane; a shout-out to the world that there is more to our place in life than anyone knows about; an intimate run-through of the daily chore/grace of living this one life.

Thank you for this post. It is frank and honest and giving. Your soul is of a soft-sweet-tender element; we were never fooled.

I hope your house selling/house hunting goes smoothly. Don't sweat stuff like the weather. Concentrate on that dream place where you will soon land in/at, as I leave you now with a hanging preposition.

Bonnie, Original Art Studio said...

Tessa:

What a tender yet courageous post. I know your wish is to be authentic with your readers, not to seek sympathy - but I am sorry that you are facing these challenges. It would be nice if we could have just one at a time!

My daughter had a diagnosis of cancer in her bronchial tube last year and had a tumor removed there. It necessitate many bronchoscopies - and if people don't know, they are not a lot of fun. But my daughter was able to watch the screen during the procedure and see the tumour and then the clear bronchial tube after major surgery. She is doing so well now - and I hope the news is all good for you too.

Take care and I hope you continue to blog. Not only can it be a way to witness and honor your own process, it is also a marvelous way to receive the love, support and positive energy from so many around the globe. But, of course, you already know this.

Nora Johnson said...

Thank you for your frankness and honesty which we, your blogpals, all so admire.

Please take care and we all wish you the very best for the future.

xxLola & Nora:)

Carol said...

Blimey, that's a lot to deal with all in one go...no wonder you've not been about much!!

I'm so sorry to hear about the health problems you are having...that must have been a tough thing to blog about so *Takes off hat* 'I take my hat of to you'

I have a tumour on my liver (benign thankfully) and, like you, I debated whether to blog about it. I did in the end and the support I got from my blog friends was phenomenal...I'm sure you won't regret sharing this!!

Keep your chin up

C x

Bee said...

It is always difficult to pick out any one image from all of the glorious ones, but the cupped hands with their little offering of plant life seemed to sum up this post.

The revelations about the state of your health are a bit of a shock; and upsetting, too. Everything about you is just so VIBRANT. I send you hugs and best wishes. xx

steven said...

hey tessa!! there's so much lifeforce roaring through you it's hard to imagine that anything could change that. i admire your fortitude and truthfulness in sharing such an intimacy (and i get that because despite all that readers, friends, family and students think i too am very private and quiet!). i sincerely wish goodness for you and that whatever choices you make around where you move, whether or not you blog and all the other choices you don't know about yet - are made with care for yourself as the first criteria you address. hugs and wishes!!! steven

Linda Sue said...

Whew- glad it is just an illness- i thought we were being snubbed- JOKING! God I love you- your honesty and that you refuse to be defined by said illness makes me love you evenmore. Difficult...my Mother had misdiagnosed my oh my- and was treated aggressively for leukemia instead- idiots! Anyway she lived through that for many years and died of what some call "old Age" where everything just stops simutaneously- but it was not the my oh my that did her in.
Your news is not welcome but it sort of is because Your here and talking and being beautiful!Don't go anywhere without me...unless it is to move to dryer sunshiny place...You are sstrong and resiliant and I have no doubt that, though challenging, you will pull through wonderfully, and will chalk this up to another experience... LOVE YOU!You are amazing!

tam said...

Wow. Don't know what to add that others haven't said. I agree particularly with steven - you do have so much life force, vibrancy, energy (and certainly you seem to be having a fantastically full and beautiful life - your blog is a clear reflection of that - your art, etc). Thank you, for writing about what you have been occupied with in real 3-d life. I totally get the need to be private - I have had some 'stuff' going on that i simply can't blog about and it makes one feel quite split sometimes, so I admire your integrity and frankness. You describe yourself as a chronically homesick African - my first connection to your blog. Since then I've been in awe of how much you do and have done, both in and for the world. Wow. You just keep splashing that colour out there, African child.

Madame DeFarge said...

Love the pictures. But, never feel bad about revealing anything if you feel that it's right for you. Some of us reveal very little (like me), but I admire and respect your honesty and bravery. You have my thoughts.

Titus said...

Tessa, what an extraordinary post, and I am enormously moved by your fortitude and continued love of life. The pictures were a delight, the words, well, necessary and thank you for so clearly conveying what you are going through and what you are feeling.
I offer you my good wishes, respect and prayers.
And constant visits when you choose to post, your words and images are too good to miss! Adore the balloons and armadillo.

Lola said...

Tessa mia,
my soft, nourishing, brave, generous and beautiful Tessa, the energy and joie de vivre propelling you make it impossible to think that anything (even myeloma or sarcoidosis) could hinder yet one of your many forces. I am so sorry Tessa of all this "precipitation" of events. I am not worried, just upset that you have to go through such invasive tests, dealing with the waiting and the fear.

I admire your strength and openness in sharing such an intimate part of your life, and I am honoured to be your Friend.

You created the Armadillo to leave a testimony, a colourful brushstroke, a dream log- and look what happened: you gathered love, reaping friends, solidarity and affection by the armful. You wished to leave something and instead you received.

It may be pouring, Tessa - and I know how tough it is trying to stay dry in all the commotion - but behind the clouds the sun is shining brightly.

Ngikufisela inhlanhla & ngiyakuthanda!

~Lola xx

lucy said...

My Dear Tessa...love and warm dry thoughts are coming your way in sun filled skies. I only hope to have half the grace and dignity you possess. I am thinking of you daily.

soulbrush said...

oh no, i am in total disbelief here. can't believe it...and some other expletives. modern medicine is good, not just good, great! and you are an african, strong, with the heart of a lion, remember that, and also remember it is okay to grieve about this news. love ya tessa and i am only as far as a phonecall away....jossxxx

DEB said...

Tessa, you are one of the most supportive and amazing people I've had the pleasure of interacting with in cyberspace - or any space, for that matter. Please let me / us know what encouragement we can provide you in your life journeys!

Maithri said...

I see you surrounded by angels,

Not just the limp 'haloed' variety ;)

But wild angels who walk to the rhythm of the drums, whose very wings are woven from untamed passion and the myriad blessings of love,

I see you in the heart of the storm... bathed in light, awash in stars, clothed in deep, unshakeable, unalterable peace...

Peace that comes from a life lived in grace...

Peace that defies every nay sayer and oppressor...

Peace that opens her wings to the starry eyed heavens and sings "Nothing is impossible".

If the fire and balm of love can heal a wound.

Then you will be healed a thousand times over dear Tessa.

Because you are loved more than you can ever know.

Loved by hands you have never touched and smiles you have never seen... Held tenderly in the hearts of little orphaned children and weary Grandmothers picking maize in the dusts of Africa...

And loved by a crazy, poet doctor across the seas...More than you can ever know.

I am here. I will be here. If ever you need me.

Always, Maithri

ewix said...

Oh Tessa, this is such a hard one.
My heart goes out to you.
Yes, you are very courageous indeed.
Sending so much love and many, many hugs.
How much we share in our blogs and how much we hide too....
I can't write more now.
Even though we have never met in person, I feel I know you through your writing and vibrant art.
I'm asking whatever powers there be to send you strength and joy.

Amy said...

Oh, Dear Tessa. What can one say?

I was just thinking tonight as I was taking my nightly walk, that I wished there were another word for "angel."

You know me...religion isn't my cup of tea, but I was thinking about you and your open heart and your good deeds and your boundless generosity. What I couldn't think of, was what to call you besides an angel. My vocabulary is too limited, I suppose, so angel will just have to suffice.

Your life is proof that life IS good and also that it is random and oft times, unfair. There is no ryhme or reason, is there?

It is abundantly apparent that you are strong and courageous and that you understand what life is all about. You live it fully and with joy, spreading love and light, literally across the world.

My love is with you, Tessa, and thoughts of you will be in my heart each and every day.

Caroline said...

Dear Tessa, Yes, I'd missed you. Meeting you in blogland has been such a delight and when you're not around producing your wonderful writing, photos and art here it somehow isn't quite the same.

What an awful time you've been having. How I feel for you - endless appointments and tests and waiting for results - I think many of us understand how draining all that can be. And that's without the dreaded house sale on top.

Thank you for this post,thank you for the beautiful photos and artwork and thank you for letting us know about you and your feelings.

Sending you hugs. Caroline x

P.S. I'm looking forward to your house on the beach post.

Polly said...

Dear Tessa, I have been wondering what you've been up to lately. I think I was hoping that you've been trekking in South America... this is a very, very sad revelation and I sincerely hope that things get better healthwise.

The one thing I have learnt from all the wonderful blog camps I've been to so far is that there are real people behind the blogs and that they are most real friends you could wish for too. You're not alone. I send you virtual but still very heartfelt hugs and kisses and good wishes. Please keep us updated

Polly x

FCW said...

Like dusk overtaking the sunset and the first hint of frost at harvest end, we react poorly at any threat that beauty may leave us.

Stay well.

Dianne said...

I love the part about feeling all "squirmy" when sharing this news

I have seen your comments on Mathri's blog and I read about you at Elizabeth's place and so I thought what a fine time to come out of the shadows and say hello

I love how your photos and art hold hands with your words, that's beautiful

the squirmy comment touched me because my son used to say that any time I tried to have a serious talk - he'd talk until we got to the discomfort zone, i.e., if you're having sex use condoms - and then he'd say we had to stop because "my skin is crawling from this Ma, and I feel very squirmy"

willow said...

Oh, I am so soft in the middle, too. This news was hard to read this morning. Lots of sweet thoughts and prayers coming your way from Willow Manor. ~xox

Linda Sue said...

By the Way ,Dear Tessa- could i bring Dexter to the beach house? What's a sandwich without sand? He will do that- kick sand around- not make sandwiches.
Beach house is where I yearn to be right now....

Isabel said...

I arrived here via Elizabeth's blog just to tell you we are all sending positive energy your way.
Your post is one of someone strong. Embarrassement has no place in what your words expressed.

I extend to you a message I recently send to my friend Anna, who is struggling with cancer:

http://a-room-of-one-s-own.blogspot.com/2009/08/annathe-maple-tree-and-winged-messenger.html

Blessings!

Isabel

kj said...

i love you, tessa. i really do. you have been special to me since the first moment i found your blog.

we will live in the same neighborhood and along with so many strong arms and strong hearts, we will walk the path together.

xoxo

Renee said...

For fuck sake.

aaaaaaaaaaaaaaaaaahhhhhhhhhhhhhhh

I love you Tessa and you my dear friend will live your whole life just as you are meant to live it. And I will live mine.

Love Renee xoxox

kendalee said...

Tessa, not very long ago, lovely Renee suggested I look you up because she thought I'd find a kindred spirit and that I'd love you and your beautiful, vibrant bloghome, and she was right (as she so often is). I haven't been visiting you long and I don't really know you but the glimpses I have of you and your life here brighten and enrich mine. Thank you for that. Thank you. And I am sad to hear this news - not because I don't believe you're up to the challenge (clearly you are!) but because I hate to think that someone who shines such a bright light and loves life so, should have to struggle in any way. If it makes any difference at all, I'm out here, we're out here, rooting for you! :)

p.s. and looking forward to seeing the beach house...

elizabethm said...

Tessa, I am thinking of you today. I have had my own brush with illness and remarkably wouldn't wish it away although I would clearly wish that you did not have to cope with this. My life now is better for what happened to me so I wish you all you would wish yourself.

Merry ME said...

I don't know for sure but I suspect these illnesses may slow you down some, but will not stand in the way of the beautiful work and words you produce. Like the colors in all your art, I pray for you bright days ahead filled with love from all over the world. ~me

p.s. I think Maithri said best what we are all feeling. He does have a way with words, doesn't he.

kj said...

i'm back again!

"Sarcoidosis is not cancer, nor is it contagious. Though it can occur in families, it is not inherited. Usually the disease is not disabling; most people with sarcoidosis live normal lives. In fact, in the majority of cases, the disease appears only briefly and disappears on its own. About 20% to 30% of people with sarcoidosis are left with some permanent lung damage, and in 10% to 15% of patients the disease is chronic"

i want these odds to be with you....

love
kj

karen said...

Hi Tessa.. I got a bit of a shock to read this, today! Thanks for being brave enough to tell us all about it on your blog. And thanks for sharing the wonderful life that you do have, and for bringing such colour and warmth and elegance to blogland. Warm
African hugs to you xx

Val said...

dear beautiful brave Tessa - I am so sorry to hear about your troubles but i am so glad you decided to fess up to your blog pals. telling the story is an important step in the healing process, There is so much love and support around you in your home and in the blogosphere, and we are here to share the burden and lift each other up. Never feel bad about sharing the tough stuff - we are travelling along together - NOT alone. You are a big bright shining light and you have given us all so much in beauty and inspiration - thank you for giving us the chance to give something back.
with love and healing prayers xx

Delwyn said...

Tessa

my thoughts are with you...

Happy days

Angela Recada said...

Dear Tessa,

As a mostly-silent reader of your beautiful blog, and neighbor on Blogland Lane, I'm so sorry to read of your recent difficulties.

I wish you all the best, and hope for the best possible outcome for you.

Hugs,
Angela

Sarah said...

Hi Tessa,
I am so sorry to read of all your troubles. I hope things go well with your treatment.

A Thousand Clapping Hands said...

Dear Tessa,
I am sitting here with tears in my eyes as I look at your colorful prints. I send you lots of love and hugs.
Your photographs are just beautiful.
Take care, Tessa.
Catherine xx

Lori ann said...

Tessa,

I am overwhelmed right now. I'll be back later to make a proper comment.

till then, i'm sending warm ocean breezes, sunshine and LOVE.

Mama Shujaa said...

Dear Tessa,

Sending you mingi love and ushujaa; I know the power of your love and that of the circles of family and friends will see you through to healing.

Mingi Love
Hana.

linda said...

hello there darling....I am so very sorry to hear all this crap is happening to you and send you kisses and chocolate bonbons and toughness for those terribly invasive tests you have undergone and probably will have to undergo more of... sometimes it just doesn't seem like life is charmed until one meets people like you, my dear, and for me, you have brought a bright little light into my own trials and tribs of the medical kind...just at the right moment she arrived and everyday, I have that little bit of light to look at that I dearly love and lovely thoughts of happy gogos too...so you just don't worry about us and we'll do the worrying for you, ok?

blessings and love to you...
xox

adrienne trafford said...

Tessa, my dear...my father-in-law is healed! same as all the other people in his study with MM! whatever info you need i can get it to you...!!!! xoxoxoxox

Sarah Laurence said...

Tessa, I’m so, so sorry. These health issues are so difficult and draining. No need to feel that blogging is another commitment, but know there is a community of support for you online, wishing you well.

Barrie said...

I popped over from Sarah Laurence's blog to wish you well. And I've been enjoying puttering around your blog. ;)

Kathleen said...

Sending healing thoughts your way . . .