11.3 Hemoglobin and shaky

[Andrea Barnett Budin]

I COULD USE SOME ADVICE. I was denied Aranesp Wed as my HGB was NOT under 11. I could have fought for them to call my insurance co, but when they asked if I was tired I had to say NO, which shocked me! The Phyto Formula and NADH my onc/supplement genius put me on a mnth ago KICKED IN. That's the good news. Details of that are in CHEMOBRAIN thread, if any one is interested.

And yesterday I had a headache in the back of my head. I NEVER GET HEADACHES. Thought, maybe sinuses. Then I kept feeling light-headed. Shaky. Though maybe I'm over-identifying w/my husbands plight w/Shingles and then dizziness and falling and losing consciousness and emergency room 2 X in the last wk. I'm admittedly a nervous wreck watching over him. We're trying to get a handle on his multiple issues (detailed in CONTROVERSIAL TOPIC yesterday).

My fingertips are tingly. I NEVER HAVE THIS EITHER.

Can any one tell me if such symptoms ever occurred w/them and were they attributable to LOW RED BLOOD CELL COUNT. I have never been under 11.3, and I keep dropping generally until I get my Aranesp. Even a half dosage does the trick for mnths. I am aware of the down side/potential side effects of such meds, but I'm concerned. I AM THE DESIGNATED DRIVER IN THE HOUSE AT THIS POINT, TILL WE STABLIZE PAUL. Did I mention he has a raging case of Shingles since 5/29? Any thoughts??????????

If my light-headedness, and of course it is Friday night and I won't call over the weekend as I am surely not an emergency as of now -- I will call Mon. However, my hubby has an orthopedist appt Mon AM, for the foot he broke in the 1st fall. Then we have a urologist appt in the afternoon, for his urine retention issue (which developed when they tk him off the alpha blocker for his CONTROLLED heart condition because it can cause a precipitous drop in bld press, which in fact occurred and caused the dizziness and the fall). And at this momet we may have to go back to the emerg rm tmrrw for exactly that -- to again have a catheter inserted. He's having a major problem. I am beside myself.

Paul is a 6'1" robust man who is generally highly active, gets over flus in 12 hrs, never missed a day of work, has been my rock since '95 (when I was dx) in every imaginable and unimaginable way you can or can't think of. We've been married 41 yrs.

I am staying strong despite it all, defiant till the end. Just a bit less jolly and harmonious at the moment. Full of loving energy which I'd like to share w/all you wonderful Warrior Women... ANDI

[Sheila]

Andrea
Could it be your blood sugar also acting up? I know that just the doses of Decadron before the taxol throws my blood sugar for a loop....it could also be your count...everyone is different when they feel shaky from a low....but do get your blood sugar checked too.

[Debra]

11.3 is not considered too low. That is normal for me and many times I drop to 10.6 or 10.7. No big deal at all. It always creeps up and down. Everyone female in my family averages 11.0.
I don't think your dizziness is related to hemoglobin. I might agree with previous post that is sounds like a blood sugar issue. Are you on an AI? I get little dizzy spells all the time since I started the AI and know it is from that because they started when I started the AI. Just one of those things I learn to deal with in the scheme of things!

[Andrea Barnett Budin]

So good to hear from someone! And I know you and your posts pretty well.

In Jan I went to an endocrinologist, in my 22nd yr of hot flashing and finding them escalating, in desperation. She was wonderful. She told me that flashing can come frm hi bld sgr. I've been glucose tested and am on the hi side. I have been on Byetta inj 2X a day and just this Wed hd a comp bld work up (fasting) and my A1C etc. is all better than ever.

I just called my pearl of an onc (no personality but brilliant and I tolerate him at this pt in treatment, since my fav onc went to Tenn, my next fav onc is on LI, my 3rd fav onc is in NYC). I'm pretty gd on maintenance and seeing the beauty ev 3 mnths. Just saw him. So he called right back, 8:30PM Fri -- he's great that way. Told me to come in Mon, which I suspected. "Usually" not symptomatic at 11.3 but could be. I reminded him about Paul, as I went for chemo -- excuse me -- my monoclonal antibody (as doc reminded me, not on "chemo") and for the first time ever, since '95 I went without my husb. I explained I was anxious to get done to see Paul at the hosp. I reminded the doc that I've been 2X in the emerg rm w/P in the last wk, and am under a grt amnt of stress. No comment. Pause. Ugh. He is in bc research, 1 of the leading docs in America (according to NYr Mag and a plaque on his wall), and I would advise anyone else not to stick w/such an ass, but -- he knows his stuff.

My interim doc (betw my fav going to Tenn and this one) was ok. Great personality, but I checked everything he advised w/LI and Tenn, who remains in instant touch w/email (I SWEAR I DON'T KNOW HOW HE DOES IT, BUT HE NEVER FAILS TO RESPOND IMMEDIATELY). I know I was blessed w/great docs frm '95 through to about 5 yrs ago, and have been going it alone, so to speak. Soso doc had a great nurse who knw everything, and responded right away with perfect suggestions, but when she left (last June) I moved.

So here I am. Doing great, NED, scans on the 28th and last wk's mammog was normal. ECHO in Aug. Apr transvaginal pelv sono was normal -- ovaries still lk beautiful. I love all the chemo nurses, they are wise and kind and friendly and know me well! I'm a regular -- getting the "usual" since '98.

Thanks for your sweet response to my call for support, Sheila. With love... ANDI

[Andrea Barnett Budin]

I AM ER/PR NEGATIVE -- BUT TOTALLY POSITIVE IN ATTITUDE. No AI for me. Since my husb's dizziness I am the designated driver and the trips to the hosp, inclding 2 emerg rm trips in the middle of the night, plus his orthopedist, internist, urologist, neurologist, cardiologist have stunned me. This man was perfectly healthy 3 wks ago. It's just been a spiraling nightmare. Surely the stress can send your head spinning. The shaky and tingling and a headache -- which I haven't had since '99ish on Taxotere -- are concerning. A lot of respon that my husb usually bears for us is now on my shldrs and though I feel strong and able to withstand almost anything, I don't need shaky/light-headed at this point.

Maybe I am identifying w/his suffering and adopting some of his symptoms. Stranger things have happened. I've heard of husb gaining wght during their wives' pregnancies and feeling nauseous, in sympathy. Maybe that's what's going on.

You stay strong and positive and hang in there, Debra. Your kindness is much appreciated! Love, ANDI

[Sheila]

Andi
It could also be all the stress....you have more than your share....have you ever tried any of the Oncologists at Moffitt in Tampa, or is it tooo far? I hear they are really great there...
Hope your stress level can decrease and your hubby regain his health...stress does a number on us from head to toe! Try to relax a bit yourself, you need it right now.

[Jean]

Andi,
Are you getting your usual rest duirng the evening?
You sound very stressed over Paul - I am so sorry to hear he has had
such complications ....how very upseting for you. He has been your
rock. Hope he starts to feel stronger very soon. Try to get some extra
rest. Sending you healing wishes...

Hugs,
jean

[Adriana Mangus]

Andrea: This is not so you, what's going on with you darling?
Too much thinking...,uh? let's see.. is it your travel plans to Ca too much for you right now? Think about you and your husband for now. Everytime I know I have to get on a plane and flight cross country I just go bonkers!! maybe this is the reason for your stress. Try something relaxing, like..do you like movies? On Monday I saw Mr Brooks with Kevin Costner, not exactly a relaxing movie, but it will definitively keep your mind off your pain and problems for awhile. Also (here in Ca) today it opened A Mighty Heart with Angelina Jolie, it's supposed to be a great movie.

On Tahoe I went to see "Knocked up", it's a great movie, I laughed, and laughed. Well acted, wonderful script (well some f..s.) but it's part of our culture ??? isn't?

Relax, please do not think to much about your HGB, like one of our sisters said it's not too low !! Hang in There!!

Sending you positive vibes and a huge BEAR SIZE HUG!!!! Love,

P.S. I'm also er,pr Neg - but with tons of a positive attitude.

[Bev]

Hi Andi,

Before chemopause I was very anemic . I was lightheaded, would almost black out, my heart raced and my fingers tingled til they were blue.

10 years ago the doc said it's probably anxiety, are you having problems with your husband and by the way take iron.

I too wonder if it's blood sugar. I did have gestational diabetes. But since chemo, my RBC levels are fine and I feel fine.

Low RBC's need to be addressed as they can damage your heart. I'm just worried about the cures. (Iron and Aranesp) So keep after them, you can't be driving around unconscious and it's not in your head.

Bev

[Susan M(PA)]

Andrea,

I think you would be feeling weak and exhausted, look pale,
and possibly have dark undereye circles, maybe feel cold.
The blood counts aren't accurate for me. I was able to
get Procrit at 12 from my onco. Maybe they've changed the criteria
to 11, it's been over two years since I took the Procrit.
Normal for me is about 14-15. Otherwise I'm feeling exhausted.
I can feel a huge difference between 12 and 13.
Fortunately my onco allowed me to take 1/2 doses for a time
following chemo. I did have to argue a bit.
I still had more stamina with the Procrit, than I do now at 14-15.
BTW my onco said athletes are caught using it as a stimulant.
There is a concern with long term safety, and a recent movement to prescribe less.

Susan M(PA)

[chrisy]

Well, Andi BB,
My head is spinning just hearing all the stuff you've had going on. So I'm not surprised that yours is, too. Hope this resolves quickly for you!

[Patricia]

Hi Andi BB,

Sending you hugs from San Francisco. I hope that Paul gets better soon and that life settles down a bit. Hang in there, you are such a strong woman and we are here for you when you need a little extra support to lean on!

Hugs,
Patricia

[SoCalGal]

Andrea,
Everything's gonna be O.K. In my family, we used to say EGBOK and that's what it meant. It seems like you have had a shitload of stress and worry. (AND Your husband is the one who is supposed to take care of YOU so when he is sick it's not just the worry and concern for him but it's the "who will take of me").

When you say your fingers tingle, I think of anxiety. Sheila also had some good points about your blood sugar and the decadron. I cannot tolorate steroids - decadron made me so crazy anxious and psychotic that I opted not to take it when I was on drip chemo.

And also I don't think your red blood is low enough for symptoms. I am 11.1 and last count was 10.4 I am always on the low normal (all other areas of life I am high normal. Reference range of 12 - 18 is based on men. Many woman are lower and are fine.


My symptoms of low red count:
dry mouth - ice cravings
shortness of breath upon exertion
low grade headache (not sharp pain)
no pigment on palms (red cells make your palms pink or whatever color you see)

Dr. Flori says call your real doc on Monday if you are not back to yourself. Try to just relax. Staying so super pumped positive requires work, too. Maybe just "be" this weekend if you can. (God I wish I could follow my own advice, even once). Okay - now I'm dizzy and going to bed
xo Flori

PS I bought John Sarno's books. Very interesting concepts...

[Caroline UK]

I'm reading your posting and feeling lightheaded and tingly myself. What a lot you are going through together at the moment. I'm sure that once you have had everything checked out you'll begin to feel more grounded again. These things seem to have a habit of escalating just before the weekend...just to keep us on our toes.

I read everyone's comments with interest, and another thing that came to mind was that when I get stressed, I carry all my tension in my neck and shoulder muscles. They get tighter and tighter if I don't attend to them. Like you, I experienced tingling fingers, lightheadedness and headaches a few months ago, and went for a brain and neck MRI. It was fine. I then saw my osteopath regularly for about 6 weeks, once-weekly, and she worked on getting blood supply back to the area, and after even just the first treatment the symptoms improved. She explained that the muscles and tissues tighten up around the nerves where they exit the vertebral column. This irritates the nerves, and the area becomes inflamed, which puts further pressure on the nerves, which leads to....headaches, dizziness and tingly fingers.

I don't know if this is what is going on for you. And, apologies for stating the obvious which you already know, it's important to have anything else ruled out before you go massaging the area too vigourously. But maybe a nice gentle massage, with some lavender oil, a warm bath and warm pack to your neck and shoulders might be worth a try, visualisations, and just to generally try to consciously relax your shoulders down and back.

About your grumpy old onc, I so sympathise. My first onc was exactly the same, would not even reply sometimes, when he'd ask how I'd done on the last lot of chemo and I'd describe some unhappy experience and how scared I felt. Nothing. Quite unbelievable. I would feel very young, and small, and like crying right there and then. But, I decided to change oncs, halfway through the chemo, and my new one is much better - warm and human. I wrote to the first one, and thanked him for his work (he was brilliant academically), and told him that I didn't feel we understood each other and so I was moving to someone else. I was really pleased when he wrote back, a very warm letter (!), and it left me feeling that he was just someone with a brilliant mind who can't relate to people well, and that was his problem. I felt quite compassionate towards him. BUT, I was also extremely lucky that I could go to someone else for the rest of my treatment, because the way he was with me, was anti-therapeutic and unhealthy for me.

I'm sending you and your dear man healing loving thoughts.

[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

[SoCalGal]

I FORGOT about regression. Whenever we are sick, we regress emotionally, back to being a child. When our men do it - it is such a dramatic contrast to manly behavior that we get angry. It's normal to regress when one is ill. Breathe Andi beebee. Everything will work out.