Fighting Fear

Went for a routine CT scan last Thursday, routine as far as keeping an eye on the liver tumors, which have mercifully been shrinking.

I tried to put it out of my mind.  I believe if you imagine negative outcomes, they can become a self-fulfilling prophecy.  I hadn’t heard from the doctor by Monday but around 7:30 that night I got a call from the local hospital’s scheduling department saying that my oncologist had ordered a PET scan, which is a more intensive and comprehensive diagnostic test.

It was too late to call her to get details and but the implications were not good, something must have shown on the CT scan. Because I didn’t know what the results had been, I assumed the worst.  I assumed worse than the worst. All my carefully organized positive thinking flew out the window so fast I am surprised the glass didn’t break.  I was a MESS.   I had hours and hours to agonize over what had been found and each hour had me escalating fear and anxiety exponentially. 

  

One of the hardest aspects of not having a significant other is having no one to share the burden, to talk you off the ledge.  It doesn't help having my little dog, because she acts sadder than me when I am upset.  The cat only cares that I sit still and provide her with a comfortable spot to sleep on, so  that is not exactly comforting.  On a certain level, I absolutely do believe God is with me and loves me and symbolically holds me in His arms.  But when push comes to shove, there is nothing like a flesh and blood person sitting in front of you encouraging you to calm down.

As early as I could, I sent my daughter a message asking if she could give me just a little bit of her company.  I hate to ask.  She works nights and has two little ones.  But she was over within minutes, after getting my precious Maddy on the bus for school.  Her quiet, sensible cheerfulness made a difference immediately.  We called the doctor’s office to see if we could get some details, but she was with patients and I had to leave a message.  My daughter had to get going before I got a return call, but her visit had made me feel so much better. 

 

I didn’t hear from the doctor until late that evening!  This was a first where I had been left hanging this way, she is usually incredibly responsive and considerate.

 

It was not the dire news I had envisioned.  But it wasn’t exactly good news either.  There has been some change in the tumors and she wants a clearer picture, hence the PET scan.  She wants to discuss the possibility of Radio Frequency Ablation again.  That procedure had been considered last spring.  But it requires general anesthesia.  Because MS has partially paralyzed my diaphragm, undergoing general anesthesia would result in me being on a ventilator to breathe for me for the rest of my life.

I have been blessed with the most incredible network of loving friends.  But it is hard to stay strong when you are alone at three o’clock in the morning and your mouth is dry with fear and dread.  So it is back to the drawing board.  I have set myself up a regimen of prayer and meditation.  I am focusing on healing and reinforcing confidence in God to ease my fear.  I need tangible bolstering, so I am listening to affirmations, reading affirmations and setting my timer to regularly remind myself to pray and listen.  I am a walking Affirmation.  I am willing myself to eliminate fear from my consciousness.

When my youngest daughter was an adorably sweet and funny nine year old, she regularly drew me pictures to post over my desk at work.  I still have some of my favorites.  One said how much she missed me when I was at work and she wished she could be with me “the hole day”.  lol  Loved that one.  But the one I framed and have truly cherished all these years, even before I got sick, is this one.  It shows a tiny stick figure in a boat on the sea, buffeted by wind, waves and tornadoes.  Two large hands are stretched out over the figure and the words say “God will always protect you!”:

I have it in front of me now, my much needed reminder.  Please Lord, I pray, let me feel your comforting presence around me.

Amen.

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Rehab Abbey

All the testing in the hospital has determined that the muscle which helps my lungs breathe in and out is partially paralyzed.  The steroids are helping and my breathing has gotten a little easier, but I am still short of breath with exertion.  Since the problem has responded to the Solumedrol, right now the focus will be on building up my strength again.  During the week I will talk to the doctors about what we are going to do the next time this happens.

As usual, I have had gobs of amusing little episodes along the way.  I've illustrated my reactions as channeled by Maggie Smith as the Dowager Countess.

The respiratory therapist gives me my ventilation treatment and then decides he will do a little respiratory education.  “This treatment can really dry out your mouth.” he says.  I nod gravely to show I am a smart person and to express my profound comprehension.  “If that happens….”  I wait for his nugget of brilliance, “…drink a little water.”  Alrighty then.  Write it down.  Straight from the expert.  If your mouth feels dry, drink some water.

Then I am off to rehab.  Discharged from the acute hospital, I am transported in a wheelchair van by a very nice man to the rehab hospital.  By the time I get up to my room I am exhausted. I am brought a tray with dinner but I can barely eat it.  I just want to sleep.  A VERY PERKY nurse comes in to admit me.  She is firing questions at me a million miles an hour, so fast I can barely answer.  “Any skin breakdown?” she barks.  Before I can reply she whips down my drawers!!  She’s faster than my high school boyfriend.  Oh, why me Lord?!?

One of the aides at the rehab facility is an extremely tall, thin, striking looking African woman.  She is exactly what you would picture an African queen to look like.  Perfect posture and regal bearing.  Her voice is deep and melodious, although she does not speak often.  She does not giggle and laugh with the others, she has an innate elegance that I find fascinating.  One night she comes in to help me get into bed.  She swings my legs up and over effortlessly but then looks at the floor...  “This is powder spilled here.” She says quietly.  I am mortified and apologize profusely.  “Oh, no, it is fine, I am going to clean it up.”  She comes back and tells me how dangerous powder on a tile floor is.  It is very slippery.  I keep apologizing but she assures me she just wants to let me know to keep me safe.  “There is something even more dangerous than powder,” she says solemnly.  “Really?”  I am sure I have spilled this substance or will in the near future so I am hanging on her every word.  God knows I don’t want to be the one responsible for a freakish outbreak of slips and falls in Healthsouth.  “Yes.  It is…banana peels.”  I just stare at her.  I am thinking she is making a joke, but her fascinating face is perfectly straight.  “Banana peels are so dangerous.”  She acts out a little accident with her hands.  “You step on it with your foot and your foot will go flying out from underneath you.”  She has literally rendered me speechless.  “Wow.” I finally say.  Banana peels are dangerous.  Who knew?  She slides quietly away into the night, ever on the alert for banana peels.  Thank goodness.

 

The floor starts to quiet down and the lights are lowered.  My roommate is sound asleep.  I doze off, something that is usually really hard for me to do, and I am jerked back awake by a raucous burst of laughter.  Peering at the clock without my glasses, I can see it is in the neighborhood of 9 p.m.  I am irritated, but doze off again.  Am wakened once more by a shriek of laughter.  It is 9:45 p.m.  I doze again but wake up to a screech and more laughter.  It is 10:30 p.m.  Visiting hours are supposed to be over at 8.  Now I am pissed.  I ring the call bell and an adorable young nurse’s aide responds.  “Do you need something?” she whispers sweetly.  “That bunch over there is really disturbing me.” I reply.  She looks over at my 90-something roommate, who is out cold and silent in her dark side of the room.  “This bunch?” she asks, gesturing to no bunch what so ever.  I look at her for a second to see if she is pulling my leg.  But no, she appears to be completely serious.  “No, the bunch across the hall that is laughing and carrying on as we speak.”  “Oh,” she says with a kind smile, “they have been allowed to stay because it is a young person.”  Ahh.  A young person.  That must be the one I heard shriek “OWWWW, cut it out Mom it really fucking hurts I’m not kidding.”  Charming child.    It really sounds as though she needs the comfort and care of her mother. 

I had been told by the OT Director that I needed a lower bed.  After three days I still do not have one.  They don’t want me to go to the bathroom without an aide, but if I wait for someone to respond to the call bell, I won’t make it.  So I am told I will get a bedside commode.  Three days gone, I still do not have one.   I always check “tea” on my menu, but I usually get a cup of coffee and a tea bag.  The aide working this morning offers to get me a cup of hot water.  I am so grateful!!  I give her my ceramic cup (a gift from a loving, thoughtful friend) that I last used yesterday.  She returns ten minutes later with the dirty cup, with several rings of old tea, full of hot water.  It never occurred to me that I had to explain the cup, which had the remains of tea in it, needed to be washed.  I feel like crying.  How can I be upset when she was nice enough to get the hot water?  But why would she not wash out the cup?!?   

The family of my roommate, along with her aides, drives me crazy with their noise and thoughtlessness.  They have the television blasting constantly and have no consideration for any one besides themselves.  But she herself is a quiet little lady who minds her own business.  I think they drive her nuts too.  One the rare occasions she is alone, a physical therapist comes to pick her up for therapy.  “Hello Mary!!” he sings.  Her name is not Mary.  He adjusts her, gets her into her wheelchair, all the while calling her Mary.  Finally I say from my side of the curtain, “Her name is NOT Mary!”  A young Philippine man sticks his face around the curtain, studying his list with puzzlement.  “But she answered to Mary.”  He looks a little more and sees her on his list, her name slightly different from Mary.  I don’t say anything more.  I think not responding to her proper name was “Mary’s” little rebellion.

Yesterday afternoon, I called for my break through pain meds.  No one brings them.  I ring again after 45 minutes.  But by then it is time for my heavy duty med, so I decide to wait it out.  At ten I ask for the break through meds again.  At 10:30, I ask for them again.  At 11:10 I ask for them again.  At 11:20 the nurse brings me one tablet, half the dose, PINCHED BETWEEN HER BARE FINGERS.  That’s right.  No med cup, no identifying packaging, no gloves, just two fingers and a pill.  You know what?  I am simply too tired to fight with her.  While it is up there, it is not the absolutely worst thing she could do.  I do tell her that is just half the dose, I need the other pill.  And back she comes again with the bare pill in her bare hand.

Why do I have to be the cranky cow who complains?  Why can’t I be patient and kind?  This is why I hate people.  They make me feel bad about myself for hating them for being horrible.

Sigh.

On the plus side, I do like the staff a lot.  They appear concerned even when they don’t follow through right away.  The physical therapists seem really responsive and encouraging.  I am looking forward to working with them.  If I can get past all the other stuff.

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Some Things Going On

Dr. Wonderful

Met with Dr. Wonderful this week to check on my shoulder. I was delighted to demonstrate my prowess in doing things like…touching the top of my head. He appeared to be delighted as well. And he told me not once, not twice, but THREE times that I looked good. GOOD. With a big smile. No back pedaling. I was quite pleased.

As a matter of fact, about a dozen different people told me I looked good this week. Or even ‘great’. It has been very cool. Although it has left me wondering if there is an epidemic of poor eyesight going around. Hmmm...

Wedding Preparations

Ordered my dress for my son’s wedding. The Herman Melville special, as in Moby Dick, THE GREAT WHITE WHALE. I am dreading trying it on as I have lost two pounds total. Probably in my earlobes. Oy.

So desperate times call for desperate measures and Mary Kate and I are both starting…dunt dunt dunnnnn…Slim Fast tomorrow. Nourish shmourish, I just want to be thin again.

Lonely

My best friend, my sister and my therapist are all either away or going away this week. Oy. I am already decompensating.

Another Operation

I am having surgery next Monday to correct a problem on the eye I lost when I was a child. I am a little nervous about it, especially since ALL MY SUPPORT SYSTEMS WILL BE AWAY. Traitors. :(

Oh, I'm just kidding. They are the best people in the world and no one deserves a break more than they do.

The surgery will affect my appearance, theoretically for the better, by improving the function of the lids on that eye. But it's a little scary to think of something going wrong that would be so visible. My eye surgeon is supposed to be the best in New Jersey and he is very, very nice. I do trust him.

But God knows I don't want Dr. Wonderful to have to say next time he sees me, "You look...hmm...just so-so."