11.3 Hemoglobin and shaky

[Andrea Barnett Budin]

I love this network of extraordinary women, who've been through hell and back more than once and totally get it. Your support and caring is invaluable, irreplacable. It's so wonderful that we have each other. I read all yr messgs and ingested ea suggestion and perspective. Surely stress is overwhelming me.

After living w/my husb's moaning in agony for 2 wks 24/7, I was a bit of a mess. Then he got up frm 2 wks in bed, not eating or drinking due to the nausea assoc w/Shingles, chills, feverish feeling and nerve ending pain around his torso and down frnt & bck & in to the testicle -- and drve to Ft/ L & played 5 hrs of glf iunder the Fla June sun, called sev X to say I'M FINE, his famous in denial words alw. He walked in the dr and imm sd I DON'T FEEL GOOD. Take yr bld sgr and bld prssr. Sgr gd. Prssr 60 over 40! He was going to lie dwn but went to walk the dogs first. He bent and as he std up the rm was spinning. He fell bck and down. As it turns out break 3 metataral bones in his ft. Emerg rm for 12 hrs. Did brain CT, brain MRI. Neuro consult. Had bn on pn meds and Lyrica for nerve pain which messes w/yr CNS, causes dizziness and precipitious drp in bld prss. Tkn off Lyrica and off Hytrin alpha blckr (which as it turns out also shrinks enlarged prostate and aids in urine flw, we now know). Home F's Day, rght to bed. Urine retention gt so bd Tues that we ran to urol who waited in his office for us at 5: and inserted cath. Put bck on Hytrin to shrnk prost. and imprv urine flw. Knees buckled and fell bckw at 10:30 that night. I sw this hppn and ran (not even stpping to rch for my glsses). He fell agnst a large chair in our bdrm. I cradled his head. He moaned and started to drift away, turning his hd. STAY W/ME PAUL. STAY W/ME. I'M CALLING AN AMBUL. I got to the phone a step away, w/o glasses and felt for 9 + 1 + 1. I need an ambul. 2 days in hosp agn. Dear God. So since then ev tm P moves to stnd or sit up or bend, I rmnd hm SLOWLY. I've becme aware of hw we automatically move to go where our mind thinks to go without realizing it and how he now has to brng this into hs conscsnss all day lng. SO YES, I AM STRESSED. And surely the pain in my neck and shoulders, and back of hd are there. I've bn aware and consciously RELAXED those muscles and talked mys dwn for the lst wk. I knw Dr. Sarno says the cycle is PAIN, FEAR, BACK TO PAIN. The more pain, the worse the fear, which tenses the muscles and impinges on nerve endings and creates more pain. And then more fear. I meditated in the hosp to stp that cycle. Alert to its signs. Lghter is great I agree. But I am groggy, beyond tired phys and emo. I hv kept notes trying to rem and report what happ on wht day after what pill was stppd, restarted, etc Symp at ea pt. It is w/Paul's list of meds and dosages tkn daily -- WHICH WE MUST ALL HAVE FOR OURSELVES AND THOSE WE LOVE AND LIVE W/ AT ALL TIMES -- BTW. I never go out w/o my drvrs' lic and my insur card and this list of pills.

Paul has becme so wk, he lks 20 yrs older, skinny and nt in a gd way, walks w/the heel of the brkn ft and the gd ft and the imbalance. I am sudd lving w/an invalid. HE WILL BE FINE. But I have never bn so scared, not ev whn I ws dx. I had the glancing thought -- it's eas to b the patient than the caregiver. Then I tossed that away w/images of me pushing a drooling husb in a wheelch and replaced such ideas w/ I AM NOT GOING TO ALLOW THIS CRISIS TO MAKE ME SICK. I WILL STAY WELL AND HEALTHY. PAUL WILL BE BACK TO HMSELF. I WILL SEE THAT HE GETS THERE. I now collect and drag the garb to curbside, walk the dgs, serve fd to get into hm all day, hover, can't sleep. I became Brunhilde, a witch demnding he drnk and HYDRATE. You don't und when you fl so sick you can't eat or drnk. I UNDERSTAND -- I'VE BN ON CHEMO TWICE. At least you have hair! And eyebr and eyelashes. I flt sick most of the time and I forced mys to eat a little something and keep flushing out the toxins -- for my own health!

BLESS YOU LADIES -- SHEILA, JEAN, ADRIANA, CAROLINE, FLORI (?EGBOK), PATRICIA, CHRISY, SUSAN.... I FEEL SO BLESSED TO KNOW EACH AND EVERY ONE OF YOU -- MY BUDDIES, MY SWEET AND SASSY SOUL SISTERS. Yes, I go bonkers before flying, but the end of July sms a hundred yrs aw. I am liv through this ordeal in the one day at a time mode, which conjures up my own traumatic strggle for surv. Sme days I went 1 hr at a tm. I was pre-mammog and didn't ev ntce, though I "knw" it was apprching, focused on P. INSCANITY has norm set in wks before (I go on the 28th) but I haven't had tme to dwll there. I must fght the light-headed shaky feeling because I am nded nw to gv back a little of what P has gven me esp ovr the last 11 yrs. I am here in lrge part because of his love and doing it all w/o complaint. And of course, as we all knw, we Survivors nvr jst mv on. It's on ongoing proc once dx w/ca. Vigilant. Attuned to any changes in our body. Working at not freaking out, obsessing, but taking care of our temple -- our body and mind (physical/psychological/spiritual). It's a full time challenging and diff jb. You all knw I feel positive abt me -- and quit naturally about Paul. I kept praying while sitting w/him at the hosp -- GOD STAY W/HIM. GUARDIAN ANGELS STAY CLOSE. Keep him well. I am obsessed w/healing thoughts of P and my role in standing guard over him. In the hosp I was back and forth to the nurse's sta, mov thngs alng, checking, double checking, getting him what he needed. I went dwn to the cafeter to replce the "most vile turkey sandwich every eaten" etc. I hve never bn so active. Drving to get the walker, urinal and shwr chair, walk the pups, bck to the hosp. Emailing friends who are concerned and lve my nwsy sys of gett bck to all of thm w/thanks and love -- in mass emails. Busy, busy. Cardiol, neurol, urol, orthoped, internist. MRA, Tilt Table Test, bld work, urine cultures... It's bn crazy. No tme to relax. Not now, but that's ok, I go to Yosemite in my hd frm tm to tm in medi and feel the bty of the Univ and all the love coming to Boca.

Sending hugs to each of you. There are lessons within this post (and all yr posts abve -- for ea of us, to help enrich our lives... LOVE YA, ANDI

[chrisy]

Oh, Andi - what an incredible ordeal - and one that has been going on for weeks. I can feel your 100mph stress level just by reading your post (maybe for a few days you should slow down and include the vowels!LOL) It seems you have not just your body but your mind in turbocharge mode - thinking, praying, monitoring, working on relaxation for you and Paul both. We are all praying for both of you - if you have to relax your mind a bit for a while you can release some of your anxiety over Paul to the angels being summoned by all our prayers.

I know about going to Yosemite in your head - I am lucky enough to go there in body whenever I need to, but I have a special place there in the high country that I go in my head daily. Yesterday I physically wnt thr, I love my first visit each year when I can see the new life, see how things have changed yet remained the same. This is my place of strength - I feel like I can just plug into the power of life there. It is in Lyell Canyon, near Tuolomne Meadows. There is a place where there is a series of bridges over the Lyell fork and the power of the water rushing through is awesome. My favorite part is actually in some boulders in the river where pine trees are growing out of rock. I have a special one I call my "chi tree" and I go there to connect with the life force that can make trees grow in the tiniest crack in a rock. It is my most favorite place in the world. Hold thoughts of that sort of power and life, and imagine the torrents of water rushing through rivers and over the edges of granite cliffs washing all the stress from your life and filling you with new clean energy and power.

I am sending you and Paul all the healing and calming energy I can find.

BTW, QOL is sometimes a good Zin at Yosemite, check out my updated avatar!

Much much love
Chris

[Andrea Barnett Budin]

Hi Chrisy, You made me laugh -- out loud. I am always aghast when I pour out my heart into a post and see how lllllllllloooooooooooooong it is. And I guess I am in turbo mode -- leaving out the vowels. I think I was trying to "shorten" my post, knowing I had so much to say, from the getgo. Thanks you for seeing my thinking process so vividly. You are an extremely empathetic Soul. That's beautiful.

I don't know if you read about my Yosemite/deer eating crab apples out of my hand post, but your description of this magical place was spot on as they say. The roar of the Merced as you enter on that steep incline in your car, aimed straight for the sky -- scary but awesome. And the power of the rambling river is full of such power, it has ample for you to reap from the sight and the sound. I walked among the Sequoias, as tall as the Empire State Bldg and wide enough for two cars to go through, side by side. Ancient, or older than me any way, and thrilling. Full of energy. You could feel the life force, the "chi". Trees growing out of rocks, the reaching for life from beneath the ground up toward the sun is empowering.

Dr. Mitchell Gaynor (Healing Essence) is my NY onc/supplement expert/healer. He teaches guided imagery and meditation. 40s, I'd say. Unique to be sure. In his book he speaks of growing up in Texas and his father/dentist told an old Indian man that worked for him to cut down a tree that was obvious dead. The (American) Indian refused. He said it's ESSENCE was still alive! Each day he went out to the tree and talked to it, stroked its' trunk and fed it. In a few wks it began to sprout. I immediately identified w/that tree after met bc. For a while I thought I was a dead woman bearly walking. I realized instantly reading this account of the tree that MY Essence was still live. I decided to talk to myself, nurture myself and help guide my body to heal. My Spirit still lived!

I was in Yosemite in '78 but the images I carry inscribed in my heart stay w/me. I stood looking over a valley a mile beneath, green carpeted with wild flowers blowing in the wind of wild colors swaying -- reds and purples and pinks waving at me, beside a great lake. I could see the Indians that once lived there, their squaws and papooses running and playing, their ponies... I sensed their energy still there in the air. The sky was a brilliant blue, an impossible blueness that was like a great canopy coming down to the land. I was inside a snow globe. Connected to the Universe, and in perfect sync with Life. I connect w/that energy often, recreating the moment experienced decades ago. It is also MY favorite place in the world. Some day I will return, but for now I carry the memory of it close and often. I hold the thoughts of that power and life. I imagine, as you say, the torrents of water and those magnificent granite cliffs. I will now add, as you suggest -- feeling the rushing water wash through me, carrying off all stress and filling me with new clean life-affirming air, as I take deep breaths in through my nose and blow the air out of my pursed lips, hearing it escape with all that is unwanted, kissing it goodbye...

Thank you for your beautiful message, Chrisy. Love your picture.

BTW -- QOL is ?????????? sometimes a good Zin at Yosemie, check out my updated avatar!????????????????????? Please explain. I am intrigued.

Great big hugs and much love... ANDI

[Lani]

do you know that by mid/late August (19th I seem to remember being announced at ASCO) Dr. Pegram is moving to Miami where he will be practicing out of the Cancer center.

Let me know if this info is helpful to you!

[Andrea Barnett Budin]

Yes, Lani. I saw a post that he was leaving Calif. Maybe going to Fla. Then I saw Univ of Miami, I think. So I called Pegram in Calif abt a mnth ago to ask. WE DO NOT HAVE ANY OFFICIAL INFORMATION TO GIVE OUT AT THIS TIME. When will you know? Call back in a few wks. I did. Same spiel. I was so greedy, I was hoping Boca. Miami is ok for ev 3 mnths however, and I love Mark, of course. He's helped save my life, after all!

Am due to call again to verify in another wk. So exciting to me, to have him so close vs on the other coast. I visited him Feb '06 when I visited my Calif dghtr and her then 1 son, now 2 to visit -- on their Bdays -- Feb and late July. So he was somewhat accessible but now -- I am looking forward...

Thanks for the info! Love, ANDI