11.3 Hemoglobin and shaky

[Andrea Barnett Budin]

Flori, Thanks for that. I see it. I know Paul is big on DON'T TELL ME WHAT TO DO and I am always telling him to grow up, he sounds like a 5 yr old child. Hence, he played golf (against spousal advice to the contrary) after 2 wks in bed, which he has never done before, thinking he was FINE.

That's Paul's other famous line -- I'M FINE. Said it just before the 1st time he collapsed and passed out and broke his ft. Has been saying it straight through the 3 emergency room visits (went for #3 last night to reinsert the catheter), through the hospital stays, etc.

When you give it all a simple name -- REGRESSION -- it kind of makes my observations valid. Clarifies what I knew I know but couldn't explain it.

I do believe he will be fine. That is imbedded in my nature. I got him drinking so much liquid due to dehydration from 2 wks in bed not eating and drinking and then 5 hrs in the Fla sun "playing" -- when he began to retain urine and we went on an emergency basis to a urologist friend of my son-in-law, the doc insert the 1st catheter and pronounced him water intoxicated. In fact, now, as it occurred again (no urine coming out even w/the catheter) HE IS DEHYDRATED. The cells and tissues in his entire body are soaking up every bit of fluid they can get to stay well.

Tmrrw we go to the orthopedist (for the broken foot from the 1st collapse) and then to the urologist for follow up. If I can manage it I will go to the oncol to check out my feeling of being weak-kneed and about to pass out. NO! I CAN'T PASS OUT! NOT NOW! I AM THE "CAREGIVER" IN THIS DRAMA. Time to switch roles.

My "normal" HGB (pre-bc/chemo et al) is 13-15. I now hang out mostly in the 12's, which leaves me low on fuel. In low 12's I become a slug, begging for Aranesp, despite the controversy and the new rules. I have never been 11.3 and am concerned about my well-being. I feel shaky. Not from the stress, which I totally acknowledge is real and is straining my neck and shoulder muscles, which I catch and consciously "untense" throughout the day, meditate (even in the emerg rm and the hosp rm), BREATHE!!!!!! innnnn and HOLD and blow the air out along w/all that is unwanted. Suck in life-affirming air, let go of all that is negative, toxic and bad for you... Thanks for your support -- and the reminder. I need reinforcement. You're an angel, Flori! Regression. That's a gift you just gave me. Thanks. I needed that. LOVE YOU... ANDI

[fauxgypsy]

Andi, I have thought about you and your husband all weekend. Hope you are both feeling better. I hope vowels are back in your life. If my capitals are missing occasionally, it is because my shift key doesn't always work. Hasn't since last spring when I raised an orphan. I'll post a photo that explains it.

Flori, I love EGBOK. I have been telling myself that all weekend. I have an appointment for a second opinion tomorrow afternoon and my husband, Dale, has a spot on his kidney that showed up in an ultrasound last week. He has been having pain in his right side radiating to his back for several weeks and kept saying he had pulled a muscle. Would not go to the doctor. I think they are going to do a CT scan tomorrow morning.

So...EGBOK

Leslie

[Andrea Barnett Budin]

Hi Leslie, Though I get the point for sure, does EGBOK stand for anything in particular? Or is it more like GOBBLEDEEGOOK?

I have been told from my scans that I have a cyst in my right kidney. Nothing to be concerned about. Sometimes I move, twisting back from the front seat or to the night stand and I get this breathtaking gasping pain. It is the cyst. Not an issue they tell me. Filled w/fluid. I pray Dale's thing is like this. Annoying, sometimes painful, but nothing to be concerned about. Please let me know.

I also get a pain like that in the lower right abd area. I'm told repeatedly that it is scar tisse (from my tram flap reconstructive surgery). It has been yrs. Nothing visualized in scans (chest/abd/pelv) and transvaginal pelvc sonograms that I have ev 6 mnths. Scar tissue can be a pain, really. The price of having a manmade breast in my case.

Muscle strain can also be a source of pain, followed by fear and concern, naturally, which tenses the muscles and impinges on nerve endings, which is very painful. Tensing interferes with oxygen flow (ischemia) and can be really bad pain. (Learned all this from Dr. Sarno, The Divided Mind, and my personal experience w/him in '80/81. The man changed my life w/his pioneering insights!!) Of course, Dale wouldn't go to the doc. Such a man. Baby. Regression. Read Flori's post on that. Very enlightening.
A Knowing she shared!

Still have much to say to you. Went to emerg rm again last night for reinsertion of catheter for Paul. Couldn't pee. Drinking lots, on command by me! I AM TOUGH when I need to be! After insertion -- little or no pee. We waited for bld and urine tests, THINKING. Is it renal failute? Our minds were going every where. I was full of fear, which you know I consciously seek to avoid, experience, vent and dismiss re me, but re P, I was plain scared. Love the guy. Depend on the man. Can't imagine Life without him. Bottom line -- he will prevail, if I have to drag him over the finish line myself (w/him a full foot taller and bigger than me). Mothers have lifted cars to free their babes. I feel I could do anything to save the love of my life, stubborn though he is.

Keep me informed re Dale. And YOU. And I will get back to you on personal matters in detail. You have not left my mind. I relate in so many ways to you. Would love a picture of you, to go w/the name, but I feel close to you all the same. Much love, ANDI

[fauxgypsy]

Andi, It is from Flori's post-Everything is Going to Be OK. I am at loose ends tonight, irritable and worried. Probably a little of feeling sorry for myself and guilt because I do. I am worried about the oncologist I am seeing tomorrow. I want to change but for some reason the change really scares me even though I know this oncologist is really good and compassionate, and will listen to me. I do need a second opinion. When I first got this diagnosis I felt like I didn't have time for a second opinion. I was so scared. Now I have had time to think.
I am worried about Dale, although what you told me makes me feel better. Flori is right about the regression. I think Dale tries to protect me or be manly or something but it ends up making me feel like he is mad at me. His health is not as good as I wish it were. He had sleep apnea undiagnosed long enough to damage his heart and he in also diabetic. We've been together for almost four years now and been married since Jan. Married in JAn. then I find out about the cancer. He has been so good to me but this has been very stressful for both of us. We've been friends for many years, I was matron of honor at his last wedding many years ago.

I tried to upload some pictures tonight but couldn't get it to work. I'll keep trying. Keep up your spirit. Keep dragging Paul and I'll drag Dale.

Leslie

[Andrea Barnett Budin]

My attitude has always been I feel so lucky, It could be so much worse. I sit in the onc's waiting room, looking at all the old people and me and have a momentary poor me moment. Than a young child came with mommy and a hospital bracelet. I looked heavenward and felt blessed. I was dx initially just after Chritopher Reeve had his horrible accident ('95). I could walk and breathe on my own, I could feed myself, go to the bathroom myself, bathe myself. These are each blessings we take for granted. So my perspective was I feel so lucky, and blessed.

And if you have a poor me moment, indulge for an hr or half a day if you must. Then envision yourself well and happy. Let the chemicals in your body that go along with that thinking process permeate you. Like smiling -- you just start to feel better "automatically" as a result of the ideas going around in your head. Whereas remorse and regret and guilt cause you to feel irritable and worried, which conjures up more ugly scenarios and sends all the wrong energy out in to the Universe. What you think and envision draws LIKE energy to you. And, obviously, what you truly want for yourself is loving, joyful, healthy, harmonious energy to be magnetically brought to you. So you have to do your part. And, as a result, you FEEL better because our emotions are evoked from what we dwell on. We each have the ability to consciously alter our thinking patterns. It is difficult at first, as it is with any thing. But w/practice it becomes easier and easier. Even after calling 911 and asking for an ambulance, I was strong, steady, focused. The men who came in to the bedroom asked many questions. I got my notes, my calendar. I have every med I take and the dosage and an updated copy of all Paul's meds/dosages. I have his social security # (memorized mine but have it written in case I'm loopy for some reason). I had started chronicling all that occurred from May 29 when this all started, trying to make sense of it all, and offer it to docs and med teams for concise review. You're doing great said the guy in charge in my bedroom. I was calm, though terrified. I was reasonable, not screaming. Will you be ok to follow us in the ambulance? Can you drive yourself to the hospital? I will go 30 mph. That's good. You don't have to hurry. Slow and steady, I told myself between gasps for air. Brought my cell, my calendar, locked up and set th alarm.

I am hoping for a simple answer for Dale. It may take time, require tests, so be patient. The most challenging thing to master. I am not a patient person. Not a patient patient. I try to at least appear patient and not get all grumbly and angry sounding. That gets you no where fast.

Men have a tendency to want to fix what goes wrong. When I tell P it's pouring out (as I'd do from Dix Hills calling him at work in Manhattan) he'd ask, What do you want me to do about it? I didn't want him to do anything. But it is his natural instinct. When he was helpless to make the ca go away, he researched on the net, found ablation in Calif (a new therapy) filled out all the necessary forms. Investigated stem cell transplant. Read bks. Did the marketing, the laundry, the drug store. He even went to Lord & Taylor to buy me a moisturizer I use and got low on. He was happy to do any thing to "help" the situation, to make things easier for me. I focused on HEALING. He dealt w/the bills, the insur co, etc. He did the best he could. It is enormously stressful. It takes its' toll on our psyches (perhaps needing anti-depressants to calm our jangled nerves). It takes its' toll on our bodies. I kept telling P to not allow himself to get so upset (after a half hr repeating the same sensible thing to the insur person on the phone and escalating in the red-faced anger dept). I need you to stay well and healthy, I would often tell him. We can't both be sick.

Dale isn't mad at you no doubt. He's mad at the situation, as we all tend to react to unwanted circumstances. Especially those we can't protect the ones we love from. He's exasperated, stressed, scared. He needs you to be his guiding force. Paul's anxious pained face made me often ask DO YOU KNOW SOMETHING I DON'T? He knew I wanted to hear it all. He promised he'd tell all. I'd reassure him -- EGBOK in Essence. I'm going to be okay. I just have to get through the process. In the end -- I plan on living for a long time! This grounded him, made him calm down. He'd nod his head and walk away talking to himself. EGBOK, or the like...

Let us know what the onc says re YOU, Leslie. My thoughts and prayers are with you! LOVE YOU... ANDI

[Andrea Barnett Budin]

Leslie, Some one told me to email my pic to Joe and ask for his help. I didn't know how to shrink it down.

Do you have no signature, no bio, no email address? Gee, I'd love to have access to more info. Love your posts. Love your quotes, your way with words, your artistic nature, your beautiful Spirit! BIG HUGS -- ANDI

[Andrea Barnett Budin]

JUST READ YOUR POST ON THIS THREAD WHEN YOU SO SWEETLY REMINDED ME ABOUT * REGRESSION * ! So go into that fetal position for a while if need be. You're getting in touch with your inner child -- a natural reaction to what you're facing right now. Get in touch with whatever beautiful memories you have from childhood and let it fill your head. BELIEVE in your power to rally and fight on. Remember FAITH AND FEAR CANNOT OCCUPY THE SAME SPACE! Filled with joyful memories -- fear will have to take a hike!

Wanted to tell all that I went to my endocrinologist. She said that all the stress I was undergoing this past month (with my husbands spiraling out of control healthwise from shingles to...) probably caused me to become flooded with cortisol, which in turn put major demands on my thyroid. My normally slightly sluggish thyroid is now in overdrive! I am HYPERTHYROID. So she's running some further tests on me. But -- my dizziness could be coming from all that. And, it could be coming from my low HGB. She totally gets that for me 13-15 is *normal*, meaning that is when I feel my best. When in the 12s *I* feel sluggish. In the 11s, I am crawling, and could feel as others feel when way lower than that.

Makes me think all cancer patients should add an endocrinologist to the mix. Their blood panels are phenomenal. They delve into areas oncs never venture. Give a wider overview. I just happened to finally go to one because I was so desperate, in my 22nd year of all day hot flashing, with no help or answers from any GYN or onc ever seen. Not a priority to them. Live with it. Well, I was a sweaty mess of a person, suffering in my wet suit that was 2 sizes to small, walking around in my private sauna hell, wanting to peel off my skin, jump off something and scream till someone heard me. So my daughter, Ali, heard me -- and thought -- and suggested I go to an endocrinologist. She told me hot flashes could be associated with high blood sugar. Tests and sure enough... So am now on meds for that, which has helped a lot. Helped keep me from becoming a (silent) diabetic. And improved my hot flashing a bit. I think.

Endocrinoloist also saw my husband (who is a Type 2 diabetic). Saw his broken foot (from his first collapse -- syncope -- triggered by shingles -- read prvious posts on this thread for nasty details of his saga). She has ordered a bone density test for Paul! Mentioned how this test for women is a case of REVERSE DISCRIMINATION! Said that he was lucky just broke 3 metatarsal bones. Could have been his hip, which we all know is way worse, with rehabilitation and further spiraling into bad health. Will see what those results show. I like this doc. She's on her toes. Adorable, brilliant, communicative, caring... Perfect, or practically perfect, as she jokes.

Am going for chemo next Thurs and will have all bld work done. Interested to see if my thyroid has rallied, as my husband has begun to rally.

Sending loving, healing energy to all my sweet Soul Sisters... ANDI

[CLTann]

On shingle, there is now a new medicine to alleviate the pain. I have post herpetic neuralgia, from about 15 years ago shingle. Everyday I still nurse with the pain. My treating doctor at that time told me that he had a patient with shingle around testicles. He said that is real PAIN. I can easily have the vibe of the enormous suffering Paul undergoes. Low bp is actually much more dangerous to a person than high bp. So watch out and act accordingly when his bp is low. It appears to me that your first priority is to allow Paul to recover. My prayers to both of you.

[Andrea Barnett Budin]

Ann, Are you talking about Lyrica? They gave that to my husband for his severe pain that could not be relieved even with oxycodone (large dosage) and I believe that messed with his nervous system and was the beginning of all his spiraling out of control healthwise. I told him to flush it down the toilet.

He is very sensitive to meds. Once took Ativan for something -- maybe pre laser surgery for the eye. Can't remember. But he was so loopy, he acted like he was drunk and kept saying I'M FINE. Scary. I know others who've taken Lyrica and had no bad effect. May be coincidence. But personally it was a Lesson for me. Every drug has side effects, we all know. After Paul's experience I went to the Web and looked up side effects for Lyrica. Paul had 9 out of 10. Some have 0. But we must all be extra cautious before taking a pill.

In the midst of *our* medical ordeal w/Paul I did not think to stop and check the Internet for information. I was wrapped in caregiving the man I love who was in constant agony for wks. Then he collapsed. Broke his foot. The Emergency Room. The brain MRI and every one worried about his head, not his foot. Of course! Then staying in the hospital. Going home alone. Walk the dogs. Feed them. Put out the garbage. Get back to the hospital. In the midst of a crisis, we don't think to do what has to become second nature for all of us. To check things out.

I was on my toes at the hosp making sure every one was following up as they should. That Paul was getting his meds (per usual -- for bld pressure, diabetes, etc.). Checking dosages. Dealing w/his pain. Dealing w/orthopedist, neurologist, internist, cardiologist. It was crazy.

But -- I have learned, before taking a new med to check it out carefully and consider the down side seriously! Knowledge is power. Forearmed is forewarned... An important message to share.

Sent with love... ANDI