he's gone

Things took a turn about 2 hours ago.  It's not looking good.

"Where have you been?  I thought you were NEVER coming back! Don't you EVER do that again!" Jimmy complained this morning when I returned to the hospital after a delicious night's sleep. His hands were in the mittens again, and his speech still garbled, but clearer than yesterday and more coherent.  The brain fog should abate soon.  Shona the sitter said Jimmy had been up to his old tricks last night, hence the mittens again. In response to one of my recent blog posts about his nocturnal antics, Tish Johnson texted me, "Sounds like you were wrestling a bear all night!"  Well put.  That's exactly what it's like, and it's exhausting.

When I was in the gift shop a few days ago, I saw this lit-up box that had fake tropical fish swimming around a reef. Desperate for anything to soothe or distract Jimmy, I bought it. Coupled with some soft instrumental  music I found on a TV station, it has a mesmerizing effect. Whatever works.

The days run together so, it's hard to remember what was yesterday or today or the day before...they've all been much the same.  Delirium has made communication difficult since Jimmy began taking the steroids, but his oxygen intake is better.

Yesterday Jamey hired a sitter to stay with Jimmy last night. This was the first time in the 7 years he's been sick that I've left him like that.  She came at 10PM and when I came back at 9:30 this morning, Jimmy had the mittens on, was talking gibberish and not at all happy. Shona, the sitter, said that they'd had a busy night, with Jimmy's pulling the mask off, trying to pull the catheter out, and attempting to get out of bed.

I felt badly leaving him last night, but not so badly that I couldn't sleep eleven hours straight.

Boy, did I call it last night!  After sleeping all day yesterday, Jimmy was rocking and rolling all night long.  He was agitated and jittery, probably from the high-dose steroids, and I'll bet I had to get up 100 times to put his oxygen mask back on.  He tried to get out of bed several times, once pulling the oxygen tube out of the wall in the process.  Of all the drugs I took when I was on chemo, I hated the steroids the most.  They are mean, mean, mean.

As you might expect, Jimmy is sleeping like a baby now.  He is getting 2 bags of blood.  His hemoglobin is 7.5, hematocrit 24%, and platelets 102.  I'm going to speak with the doctor today about how sedated Jimmy is.  He has a Fentanyl  patch for pain, but he is so sensitive to medication, and I'm wondering if it's a little too strong.

Happy dog

Thanks to my wonderful brother and sister-in law, William and Pam, one of my big worries has been laid to rest: my precious Andy is living with them while we're gone.  He's having a ball with his cousin Tulee and now I fear that he won't want to come home!

Watching "Cops" with William

Andy and his good-looking cousin Tulee at the dog Park

Today

Yesterday Jimmy was sharp and alert, but he's slept most of the day today, and is much less responsive.  I'm surprised because he got 1000 mg methylprednidone - really high-dose steroids - this morning in an effort to resolve some of the inflammation in his lungs.  I expected him to be bouncing off the walls, but so far, he's calm.  It may be a long night though, like with a colicky baby that sleeps fine during the day, then cuts up all night long.

During the past 2 weeks, Jimmy has eaten practically nothing.  After he got off the ventilator, he could eat pudding consistency  foods, but his intake has been so small, and yesterday they said nothing by mouth, as he is a high aspiration risk. This afternoon he started on TPN (Total Parenteral Nutrition) which is administered by IV.  It contains carbohydrates and protein and fats and electrolytes - total nutrition.  Maybe this will pop him up a little.  How can someone regain strength if they're not getting any fuel?

This big old bag of milky-looking stuff should supply Jimmy with all the nutrition he needs

I'm hopeful that we are on an upward trajectory, and that inch by inch, we can make our way back to a reasonably good place.

Jimmy's friend John McNeil from Thomson, Ga., was visiting Jimmy when I got back to the hospital today, and  Jimmy was beaming.  Seeing his old buddy did him a world of good.

Jimmy's more alert, and is pretty sharp mentally.  He continues to have issues with his breathing, and a CTscan last night showed something going on in his lower left lung.  They've started another round of antibiotics and are going to give him high dose steroids to try to resolve it.  He still isn't swallowing properly and is not getting adequate nutrition, so more intravenous supplements are being discussed.

Dr. Lonial came today and clarified a lot of things for us.  We have been getting a lot of conflicting opinions that have left us confused, but Dr. Lonial is optimistic and has a plan.  He sees the big picture.  He is our quarterback and we are happy to let him call the plays, and Jimmy and I will fight our hearts out to win.

Jimmy slept for the first part of the afternoon, then was alert and focused for several hours after he awakened.  We had a good laugh at some of his hallucinatory "memories."  Among other things, he thought somebody had stolen his beloved green Jaguar convertible and wrecked it; he thought we had been to New York in the past few days; he thought some famous actress, he couldn't remember her name, had been kicked out of the ICU unit where we were staying, for urinating on a table. He said these recollections were as clear and as real as if they had actually happened, not hazy and disjointed like in a dream.

I am back at the hotel and Jamey is spending the night with Jimmy again.  Jamey has tried to get me to do this for the last two weeks, but I wouldn't hear of it, but I'm finally admitting to myself that I MUST do it.  Neither Jamey nor I are comfortable with the sitter idea.  Jimmy enjoys having Jamey with him, and the truth is, Jimmy probably is grateful for a break from me. I've become the nagging Bad Guy, constantly saying,"Put that mask back on," "Stop pulling on those tubes," " Eat this," " Stop trying to get out of that bed."

I AM trying to take care of myself. I'm eating healthy food and eating regularly.  Back in 2008, I ate Snickers bars to alleviate stress, but that's a bad plan, and this go-round, I just cry a lot.  Crying's good.  It really makes me feel better as long as it's not in front of people.

This hotel has a little exercise room right down the hall from my room, and I've been going there most days, lifting some light weights and using the elliptical machine.  It's all I can do to do 5 minutes on level 1. I burned a rip-roaring 30 calories, but it's better than nothing and it's an excellent stress-buster.

This blog is good therapy. I have been following several other blogs for some time now, written by cancer patients or their caregivers, and it's very helpful to know what other people are going through and how they cope.  Sort of like an online support group.  I don't understand the decision of some, like Tom Brokow , who has chosen to keep his treatment "private" when sharing can be so helpful to others in the same boat. Oh, well, like they say, "That's why there's chocolate and vanilla..."

"The Sleeper" by  Pierre Auguste Renoir

"O magic sleep! O comfortable bird
That broodest o'er the troubled sea of the mind
Til it is hushed and smooth."
                               -John Keats,  Endymion


I slept over 12 hours straight last night.  The room was quiet and dark and there was no one disturbing my rest.  I'm back at the hospital and feel  much better for the break.

Jimmy is napping peacefully, but is otherwise the same as yesterday.

I finally gave in and asked Jamey to stay with Jimmy tonight, and I'm spending the night at the hotel.

Not one of our better days

I hope today gets better.  Yesterday was a big day for Jimmy, and he was exhausted.  I expected both of us to get a good night's sleep, but it was not to be.  Jimmy talked all night; maybe he was talking in his sleep but it was gibberish that went on and on and on.  Several times he pulled the oxygen tube out of his nose and his oxygen saturation dropped way low and he started gasping for breath. I'd get up and go put it back on him, but in a little while he'd do it again.

He started the morning confused and out of it, but able to answer basic questions. I managed to feed him about 3 oz. of a nutritional custard-y thing they brought in, and a little juice with a thickener in it that he can swallow more easily than plain liquid.

At about 11, a physical therapist came in to work with him to help him regain some strength.  He was able to follow commands, raise his arms, squeeze her hands, and then she got him to sit on the side of the bed. By then he was struggling to get his breath, and his lips and fingers were turning blue.  I grabbed my little oxygen meter thing and put it on his finger and it showed an oxygen level of 68 and a pulse rate of 132.  The therapist freaked and called the nurse who called other people in. They put a mask on him and gave him albuterol and cranked up the oxygen and finally got his oxygen saturation back to a normal level.

After everybody left, Jimmy was resting, still wearing the mask but then starting taking it off again.  I tried to put it back on him but he wouldn't turn it loose, and would slap my hands when I tried to take it from him.  He tried to get out of the bed, saying he was ready to go home, so I had to call the nurse to help me.  He's agitated and combative and having hallucinations.

Jamey came in about 12 and I left him with it.  I may for the first time have to get a sitter who can stay there all night and stay awake and keep Jimmy safe.  I am so tired and am afraid to go to sleep for fear he'll get the mask off again. I really don't know what's going on right now - maybe it's a 2 steps forward, 1 step back sort of thing. I'm going back to the hospital soon to try to sort things out.

New digs

We cleared two hurdles today: Jimmy was deemed fit to be moved out of ICU and back to 8E, and he's swallowing well enough to eat soft foods, like ice cream, puddings, pureed soups, grits.  Jamey and I were hovering over him this evening, feeding him tiny spoonfuls like he's a baby bird.

I guess comfort is relative: an ordinary hospital room seems palatial after having lived in ICU for so long.  We have windows! We have a bathroom! We have a closet! I can sleep on a sofa instead of a chair!

 And simplicity isn't half bad.  My wardrobe consists of three Brooks Brothers non-iron shirts, two pairs of Land's End easy-care cotton pants, a cotton sweater vest and some underwear.  When things get too dirty, I take them to the 7th floor laundry room and wash them.  It makes me want to go home and donate 90% of the contents of my closet to the Salvation Army.

From our humble abode in ICU...

...to the Taj Mahal on 8E

We made a lot of progress today.  Jimmy graduated from the despised oxygen mask to a much more comfortable nasal cannula. He was more alert and his speech is easier to understand, but some sort of a test is going to be done in the morning to see if he can swallow properly; if he aspirated something into his lungs at this point, it could be disasterous.  He hasn't had anything to eat or drink by mouth in over a week, and he looks awfully thin and frail.  If he can't swallow, the feeding tube will be reinserted. (It was removed at the same time the ventilator tube was taken out.)

Late this afternoon, Jimmy started struggling to sit up, and Jamey and I helped him to sit on the side of the bed, then with the help of two nurses, we got him into a chair.  He sat there for about half an hour before we got him back into the bed, exhausted. He may be weak physically right now, but he has more mental strength and determination than anybody I've ever seen.

There's an excellent chance we will move back to a regular hospital room tomorrow.  Today I felt like I was witnessing a miracle.

I got back  from my afternoon break to find an improved Jimmy.  He's being bossy and he's trying to flirt with the pretty nurses and he's smiling some. All positive!

It's 11 AM and I wish I had something positive to report, but things are about the same.  Last night was another Battle of the Oxygen Mask.  I'll bet I got up 20 times to push it back over his face. Anne, our A+ nurse today, says if he doesn't stop, we'll put restraints back on his hands.

We were able to communicate more with him yesterday, but he still comes and goes.  It's difficult to understand what he's trying to say, as his tongue seems to be swollen.  I continue to talk to him a lot, and he makes appropriate responses, and he gives the right answers  to most questions.  Today when he was asked what today's date is, he said, "March......twenty...."  But I couldn't have said what today's date is either.  It's strange how you lose all sense of time up here.

Jamey just arrived and I'm going to take a break.  I'll update this evening.  Pray for something positive.

Jimmy hasn't made any progress from yesterday that I can see, but on the plus side, he doesn't seem any worse either.  We were so in hopes that he would be moved out of ICU today, but that's not going to happen.

Last night was fairly difficult, for me, at least.  Jimmy was "feeling no pain," floating around somewhere out in the stratosphere on something.  He was talkative and if he pulls through this, I'm going to enjoy telling him some of the things he said. He kept pulling his oxygen mask off which made his oxygen saturation drop like a rock, so I spent most of the night sitting by the bed, holding his hands down and pushing the mask back up.  I guess I could have asked the nurse to restrain him again, but I kept thinking he'd calm down.  One of the better nurses was not on duty last night.  I think she was AWOL.

Jamey is with Jimmy right now and I'm back at the hotel resting for a while.  The hotel keeps checking me out by mistake, and I think the fact that I can't give them a definite checkout date has the people in reservations confused.  I know I have to be out of here by Sunday, because Sunday night they are completely booked. I'll just move back to the hospital, I guess. Surely Jimmy will be out of ICU by then.

Jimmy's off the ventilator, but still very sedated.  He tries to talk to us but it's garbled and most of it we can't understand. He's not a happy camper and wants to get out of here. So do I.

I guess it's human nature to long for clarity, to want there to be right and wrong answers for everything, but this is real life and not a game of Jeopardy.  If I had chosen to not have Jimmy intubated, he would have died, and I would have questioned that decision for the rest of my life.  So for the decision I made, there's no right or wrong, there's no black or white; for better or for worse, it's all about something in between .

Jimmy is responding to commands this morning: squeezing my hand, making a thumbs up sign, and wiggling his toes.  There are still a lot of secretions in his lungs though, and they want him to be strong enough to cough them up before they remove the ventilator tube.

Since I'm a bit calmer about Jimmy, I'll indulge myself with a little whine about living in an ICU unit. Sleeping in this recliner isn't too bad, but I'm awakened often by leg cramps.  William suggested that it might be dehydration, so I'm drinking more water, but the nearest restroom is in another galaxy far, far away, and by the time I make that trek, I'm wide awake, so... if it isn't one thing, it's another...

He's breathing.  He's breathing on his own.  He's still intubated and they will allow him to breathe a couple of hours this way, then turn the vent back on

The nurse told us Dr. Vee wants him to stay on the vent tonight so that we don't tire him out too much, then let him resume breathing independently  in the morning. We're taking baby steps, but this is great progress.

We're still trying to see if Jimmy can breathe on his own without the ventilator, and the problem continues to be that lowering the sedation so that he's conscious enough to communicate agitates him and he tries to pull the tube out.  The nurse just put restraints on his arms again.  We'll reduce sedation again and keep trying to awaken him.

I had to go through this four years ago, and it was a horrible, horrible, terrifying experience. You're semi-conscious and can't breathe and don't know why and get panicky.  I hallucinated and thought I was being waterboarded by Al Quaida and put up quite a battle, even after being restrained. I was furiously angry with everybody and had bruises on my arms for weeks.  So I know firsthand what Jimmy is going through.

Nothing new to report, but the doctors say Jimmy seems to be improving bit by bit. They did take new samples from his lungs to analyze, and so far, nothing has shown up.

My brother William is here and that's been very good for me.  We met the kids at Alfredo's for dinner, then he dropped me back off at the hospital where I am spending the night.  He's staying at the Emory Conference Center down the street.

Priorities

The doctors haven't made their rounds yet, but we had a quiet night: Jimmy is resting easily and his temperature is still normal.  His hemoglobin had gotten low, so he got blood this morning.  They cut back the sedation again, trying to see how he would try to handle breathing on his own, but he became agitated  and his oxygen dropped so they turned the sedation back up.

I went down to the little chapel on the 2nd floor this morning, as I often do, looking for guidance and peace.  Before I left, I was reading some of the prayer requests left on a little table there.  They said things like,  "Please help my Grandmom get well" and " Dear God, please fix my wife's brain aneurysm, I don't think I can live without her" and "Thank you for helping heal my little sister." Then I came across one that said, "Dear God, please find me a new apartment."

Will update.

This will probably be confusing because, frankly, I'm a little confused.  Having said that, on to some facts:

Jimmy's temp has gone from 104 to normal.

His heart rate was very erratic this morning, and is more regular.

His oxygen and sedation have been lowered, but he has remained completely sedated.

Dr. Lonial and Dr. Saral came this afternoon and sat down  with the children and me and we discussed the situation.  These doctors are part of the cancer team that has overseen our care for seven years and their viewpoint is at odds with the one we got from the pulmonologists Saturday.  The pulmonologists basically said they had done all they could do but put Jimmy on a ventilator and they didn't recommend that.  They sent the hospice people in.

Jimmy has a terminal cancer but it is being managed.  He has developed irreversible fibrosis and scarring in his lungs, but they say there are things we can do to slow and manage that.  The acute crisis is this respiratory infection, and they can't find what's causing it.  Nothing is growing in the petri dishes.  Are the antibiotics he had earlier this month masking the culprit? They still have been unable to confirm whether it is bacterial, viral or fungal.  Some of the treatments can be dangerous and they don't want to take a perilous route if they don't even know if they're going in the right direction.  I'm paraphrasing this but it is my interpretation of what they were saying.

Long story short, they want to do another bronchoscopy, get more samples and do some more investigating. It won't be as difficult a procedure this time because he is already intubated and his oxygen saturation is up.

Jamey and I have another concern: what if we DO pull Jimmy back from the brink, but to what kind of life? What if he says I told you no life support and you put me on a ventilator? Why did you set me up for more suffering?  I'm praying but I'm not sure what I'm praying for.  We all just want more time with Jimmy, but I guess I'm ultimately praying for God to do what's best for him.

We made it through the night, and things seem about the same. Jimmy's calm, his breathing easy and regular, although his temperature continues to hover around 104.  I'm waiting for the doctors to make their rounds, then I'll go back to the hotel and get cleaned up and try to find something to eat.  I did get some sleep here in the hospital last night. I will update later.

That's the deal

Several years ago, before either Jimmy or I had any inkling of our future health problems, I walked into the room while Jimmy was watching a movie.  Tears were streaming down his face.  I'd never seen that before, and have not seen it since, at least in the context of a movie.  "What on earth?" I asked him.  "Sad," he mumbled, mopping his face.

He was watching "Shadowlands," a 1993 movie starring Anthony Hopkins as C.S. Lewis and Debra Winger as his wife Joy who died of cancer four years into their marriage. As they walked through the English countryside, Joy was trying to prepare her husband for her imminent death.  "Without the pain of today, we can't have the happiness of yesterday.  That's the deal."

I need to remember that.  God has blessed Jimmy and me with such great happiness, and to experience a profound sense of loss is only fair when the end comes.

A bath and a change of clothes at the hotel were long overdue, and it was nice to have a place to park our luggage, but the hotel room seemed so lonesome and empty, and separation anxiety got the better of me. After I got back to ICU and determined that Jimmy was stable, I relaxed and took a long nap in my recliner in the hall.

Jimmy is calm and resting peacefully, and I hope his poor fatigued picked-on body can get the rest it needs to fight. I have not heard him cough once. He has a fever around 40.0 degrees C (about 104 F) but is probably due to the procedures today. Dr. Nooka from the cancer clinic (the doctor who gave us the ray of hope yesterday) stopped by and was very upbeat.  He had called Dr. Lonial who wholeheartedly agrees with our decision.

Ever so often, I talk to Jimmy.  We have received many messages of love and prayers, and I've been relaying them to Jimmy.  I think he's hearing me because while I'm talking, his heart and respiration rates change a little on the monitors like he's listening.

Jimmy's condition worsened yesterday as the day wore on.  They had to keep increasing the oxygen, from 2 to 10 to 15 liters just to keep his oxygen level up. About 7, a team of pulmonologists came in and said they didn't have any options left, except to put him on a ventilator and they thought Jimmy's chances of surviving that were poor.  Jimmy was in and out of lucidity all this time, but I think he was clear-headed when he said no, he didn't want it.

After they left, we had a pretty clear conversation.  (At about this time, a nurse came in and asked him a sequence of questions, to establish how clearly he was thinking.  He got the questions about his name and his birth date right, but when the nurse asked him if he knew where he was, he indignantly replied," Of course I know where I am!  I'm in Nevada!")  We discussed our options, and he was emphatic about not wanting to be on life support.  At one point, though, he said," I can't die tonight! I have too many things to do tomorrow!"

We survived the night, but it was long and hard.  AT 11 PM  I called Jamey and Rosey and Pat to come back.  Jimmy was hallucinating badly, pulling the mask off, trying to pull the tubes out, and get out of bed.  He eventually had to be put in restraints and sedated.  It was like walking a tightwire, because on one hand they didn't want to over-medicate him and further supress his breathing, but on the other they needed to calm him down.

Late this morning, another doctor(from oncology) that Jimmy and I know and like came by and told me and the children that he thought Jimmy was fighting the infection and if he could hang on a little longer, we had a small chance at a survival with an acceptable quality of life for a little while.  We immediately and unanimously said, "YES!" All we needed was a teaspoonful of hope.  Jimmy is a fighter, and we all believe if he thought he had one more shot, he'd take it. Since I have his advance directives, I have been assured that we can pull the plug if need be.

Jimmy is now in a drug-induced coma and on a ventilator.  I went in the ICU room and kissed Jimmy and told him I love him.  Then I got my suitcase and our stuff, got our car out of valet parking, and drove to the Emory Conference Center hotel near the hospital and checked in. I have not had a bath or changed my clothes since Wednesday. I have hardly slept.
Now that I've taken a shower and changed my clothes, I'm headed back to ICU.  This is the longest Jimmy and I have been apart in months.

We're hanging on.  Barely.  I'll up date as soon as I can

We still don't know what is causing this.  Jimmy's oxygen continues to drop at the slightest exertion, and they're talking the possibility of ventilators, etc, again. He is having a bad morning.  He's floating back and forth between lucidity and hallucinations.

They took Jimmy down for the bronchoscopy at about 1:30 yesterday , and the nurse said he'd be gone about 2 hours but he didn't get back until close to 5.   Things went downhill quickly after that: his fever went to 39.7, his pulse and breathing rates were rapid and his oxygen saturation dropped into the 60's and we had a hard time bringing it up.  At that point they were talking ICU and intubation and ventilators and hoardes of people were rushing in and out of the room.  I was in total meltdown and called Jamey to come.

They had him in ICU pretty quickly and got him stabilized and I packed up all our stuff and brought it down to the ICU waiting room.  I "slept" in a chair stuck in the doorway between his ICU room and the hallway.  I'm his security blanket and he doesn't want me to get too far away.

He's doing a lot better today, although they want us to stay in ICU tonight.  The results of the biopsy they did yesterday have not come back, nor some of the cultures.  He has been off and on antibiotics and he gets better, then it comes back.  They are trying to pinpoint exactly what organism is causing this so we can clear this thing up.  One of the pulmonologists said this morning that Jimmy probably has had pneumonia for months.  

Someone called Dr. Lonial at home last night about what was happening, and he came up here and checked on Jimmy, then sat and talked with Jamey and me for a long time.  He was very reassuring. 

We had an easy trip to Atlanta yesterday.  I doped Jimmy up on pain meds and the portable oxygen canister that plugged into the cigarette lighter worked just fine.  We are on 8E (8th floor, section E) where Jimmy had both of his transplants, and where I spent a good part of 2010.  We have the same doctors and there are many familiar faces among the nursing staff, so we feel right at home.

We checked in mid-afternoon and by midnight, Jimmy had had a CT-scan and an MRI, blood tests, breathing treatments, nasal swabs ...one thing after another.  People were in and out of the room all night and all morning.  Jimmy is exhausted.

Jimmy has had "an elevated temperature" of around 100.4 since we got here.  They don't call it "fever" until it hits 100.5.  His oxygen level has dropped below 70 a couple of times, so they've increased the oxygen.  Dr. Waller said there are rales and ergophony in his lower left lung, and he believes he does have pneumonia.  They will probably do a bronchoscopy this afternoon, to try find out why the antibiotics haven't worked.

Preliminary evaluations of the MRI don't show any changes in the spine - HUGE relief.  We have been worried that he might have another compression fracture.

I know this is scattershot info, but I'll update later.

Poor baby is worn out!

We're headed to Atlanta this morning.  After communicating with Dr. Lonial several times yesterday, we've decided that that's the best plan.

Round and round we go

It's so repetitious, saying, "Well, Jimmy seems a little better today...blah, blah , blah" and in some ways he is, but our situation is radically changed from a month ago.  A month ago, there were issues, but we were going to the beach, dining in restaurants, he was driving to the office for a few hours. Today he cannot make it from the bed to his chair without a walker and oxygen, and even doing that drops his oxygen level to high 70's, low 80's.  It goes back to high or mid 90's after a few moments rest, but it frustrates him no end. He is so weak and it exhausts him to talk.

Maybe it's all the inactivity or maybe it's all the coughing or maybe it's something more sinister, but his back pain has worsened to where I've had to increase his pain meds.  We know that the cancer which attacks the bones is active, and we've had to stop the chemo because of the respiratory problems.  It's a vicious cycle.

He's still asleep (it's only 12:30 PM!) but last night we were making a tentative plan.  I'll rent a a wheelchair and get a portable canister of oxygen and we'll go have his back scanned to see what's what.  If it's bad, we'll get to Atlanta, somehow or other, and if it's not, we'll look at it from the physical therapy angle.

In the meantime, we continue dealing with the breathing  problem, and he seems a little better... (sigh.)

Bloom where you're planted

Last night, between coughing fits, Jimmy turned to me and said, with a hint of wonder in his voice, "You know, you'd think I'd be pretty miserable right now, but I'm not.  I'm actually happy, sitting here with you, taking naps, watching a little TV, waiting for my next smoothie to appear..."  "Me too," I answered. "Weird, isn't it?"

I've been thinking a lot about that. It made me think of the John Milton quote: " The mind is its own place, and in itself can make a heaven of hell or a hell of heaven"  ...or something like that.  Jimmy and I are so blessed to have "cup half full" natures that can be happy, even under adverse circumstances.

We've been camped out, back here in our bedroom for almost two weeks now.  He's still on the oxygen, and has a way to go but is significantly better than he was, and that is something to smile about.

Too. Much. Information.

Jimmy is particular about his appearance, his grooming, his personal hygiene. He's VERY particular, almost to the point of being fussy, so the fact that he's gone almost two weeks without a shower speaks volumes about how he's felt.  I've given him some hospital-type wipe downs, but still... Unshaven, dirty hair standing straight up - a street person would take offense at being compared to him.

He felt better today, better than he's felt in several weeks, and I finally convinced him that we needed to address this problem.  I told him we'd both feel much happier if we did.

First I put the toilet extender thing-y from 1st America in the shower and turned on the water.  Then I got him to the bathroom (on a walker, no less) and got him undressed and in the shower and sitting on the toilet seat, oxygen tube and all. I disrobed and put on a shower cap and got in and scrubbed him down and washed his hair. What a vision. All we needed were violins playing "Some Enchanted Evening."

Get the picture.....

House call

It surely is comforting to have your doctor living right next door. Dr. Hobby stopped in this afternoon to check on Jimmy.  He brought his stethoscope and listened to Jimmy's lungs and said they sounded pretty good, but said, as did Dr. Lonial, that if he doesn't start getting better, or if he gets any worse, he needs to be in the hospital, either here or at Emory.  He's been seeing this respiratory infection all winter, and it's often taken  the normally healthy person 2-3 weeks to get over it, and he expects Jimmy to take a good bit longer.

Dr. Tommy Hobby

Jamey

Jamey came down from Atlanta yesterday, and sat with Jimmy in our bedroom for a while this afternoon.  It's so good having him here. Jimmy had a difficult morning but things improved as the day wore on.

Dr. Lonial did not refill the antibiotics, as the infection is probably viral and the abx has done its job.  He expects "the airway disease" to persist for 6-8 weeks and wants Jimmy to keep using the inhaler for the next couple of months, and his need for oxygen should lessen in the next few days.  If Jimmy doesn't get better soon, he wants me to take him to Emory, so we can explore why he's not.

A lot of balls in the air

No fever since Saturday, but Jimmy's really, really weak and short of breath.  He has stayed on oxygen round the clock.  His last antibiotic is tomorrow.  Should he take another round? Are the Tylenol he's been taking keeping his temperature down? Has his incessant cough abated because of the oxygen? Why has he had this chronic cough and shortness of breath for well over a year?

 

Last night Jimmy wrenched his back, trying to stand up, and we had to load him up on pain meds. We're holding our breath that all the coughing and moving wrong caused the pain, and not the myeloma.  But we've had to stop the cancer drugs because of the respiratory problems.  Arrrgh.

Toys

Andy LOVES his toys. His toy basket normally sits behind a chair in a corner of our bedroom, out of sight but where he has easy access to it.  Jimmy's oxygen machine is plugged into an outlet  in the same corner, so when Andy knocked the plug loose for the third time today, I moved the toy basket.

We were astounded at the number of toys he has accumulated over the years.  Some of them started out belonging to the children, but Andy thinks all stuffed animals are his, so after they've been chewed and slobbered on, they get relegated to his basket.

Wanna play?

Jimmy had a little fever last night, but not much.  I gave him his medicine at about 10 this morning, and he went back to sleep and just woke up.  It's 3:30 new time.  He seems somewhat improved, but it's hard to tell  just yet.

Shaky

It's almost 4 o'clock and Jimmy hasn't had any fever today, but he's very weak and shaky.  A short walk to the bathroom dropped his oxygen level to 86, and he was gasping for breath, even though he was hooked up to oxygen the whole time.

He hasn't left the bedroom since Thursday, and we've been shuttling him back and forth from the bed to his chair.  Shirley was here yesterday, so I got out for a little while to run a couple of errands, but other than that, I don't get out of earshot, in case he needs me.  I'm about to OD on the Golf Channel, CNBC, and car shows.

This one's strawberry

I've been plying him with vegetable soup and fruit smoothies.  We have one of those small blenders, and I add a big dollop of what we call "Kenny Powder" - an immune system boosting supplement we got from Kenny Youmans.  Come on, Kenny Powder, do your thing!

"Kenny Powder"

Dewar's Home Health Services here

Jimmy's temp went up to 100.2 last night.  That's not much fever in a healthy person, but it's worrisome in his situation.  He says I just about drove him crazy around midnight, taking his temperature every 5 minutes, waiting for the Tylenol to kick in.  I was afraid to go to sleep, in case the fever shot up and I needed to take him to the emergency room.

He and I are both convinced that he has another mild case of pneumonia.  This blog has been useful in that I can use it for reference.  I looked back to February 2009, and the circumstances were so similar.  Early X-rays did not show pneumonia, but it was confirmed in later ones. Besides, Jimmy says if you've had pneumonia once, you know when you have it again.

Dr. Lonial called yesterday to check on Jimmy and he approves of everything we'e doing, although he said to discontinue the Levlimid (cancer meds) until he get through this. If Jimmy has not responded to treatment by next Tuesday, we'll need to change antibiotics.

At William's suggestion, I bought this inexpensive oxygen meter, and it has been so helpful.  At the slightest exertion, like standing up and walking to the bathroom , Jimmy's oxygen level dropped into the 70's, his pulse was racing, and he was panting for breath.  I hooked him back up to the oxygen and in a few minutes his levels return to normal.

This is my reading, showing a normal 97% oxygen saturation and 73 pulse tate

I called First America today to bring back an oxygen machine that Jimmy can use 24 hours a day.  The little portable cannister wasn't enough.  This oxygen machine has been a lifesaver!

Dr. Hobby called yesterday morning and said that Jimmy's X-rays and CAT scan showed some mild scarring but no pneumonia.  That was mid-morning.  When Jimmy woke up at 1:30 - late even by his standards - he had fever 101 again and nearly passed out on his way to the bathroom.

I do NOT want Jimmy in the hospital unless it is absolutely necessary - in his immunosupressed state he is SO at risk for infection - staph, antibiotic-resistant bacteria, anything.  He is much safer and more comfortable at home, as long as we are doing everything here that they can do there, and besides, after the last seven years, I probably qualify for a nursing degree.

The main thing that concerned me was neutropenia, and if that was the case, he WOULD have to go in for IV antibiotics.  I needed to go to the medical records department in the hospital to get the results from Tuesday's blood tests, but was nervous about leaving Jimmy by himself just then.  I called Mac, bless his sweet heart, and he came right over and sat with Jimmy while I went to the hospital.  I don't know what I would do without my brothers.

I finally wrested the results of the tests away from the hospital and the federal government, and Jimmy's neutrophil count is at the bottom of normal but not a problem. He probably has the flu.

He doesn't have fever this morning and seems to feel a little better, so we'll stay the course unless something changes.  He's on Levaquin and Tamiflu, is well-hydrated, and the refrigerator is full of his favorite food.  I have a portable oxygen tank from First America, and even one of those little things that you put on your finger to check oxygen saturation.  Maybe I should go into the home health business and take in boarders. :)

Ellen's 65th

Well, my birthday has been ...interesting, although my expectations weren't high when the day began. Jimmy and I spent all afternoon at the new imaging center at the hospital, where Jimmy was having various tests.  No results yet, but he's feeling better.

Jimmy and I enjoy each other's company, and can make each other laugh, even under less than optimal circumstances.  The facility is located where the old Sallas-Mahone elementary school used to be, and we had fun debating whether we were sitting in Mrs. Pinkston the principal's office or in the old lunchroom. We weren't at Sallas-Mahone at the same time, but we share a lot of the same memories.

There are some really nice pictures in the waiting room by local photographer Robert Johnston

While we were waiting, Jimmy was answering some e-mails on his iPhone, and he accidentally hit a wrong button and was sending messages in Sanskrit or some language with a strange alphabet, and that got us laughing.  Then some old man sitting near us started burping loudly every couple of minutes and that got us giggling even more.  Pretty soon people around us were giggling, too.  The old guy with the indigestion was oblivious to it all.  It doesn't take much to entertain us these days.

It was almost dark when we got home, just in time for...SANTA WILLIAM! If you don't know my brother William, you should.  It's hard to describe him.  His nieces and nephews call him "the coolest guy on the planet."  He is a giver - he gives his time and attention and resources to brightening peoples' days and helping out in any way he can, for the sheer joy of giving.  But he never talks about it.  At all.  It's like he doesn't want any credit or recognition for something that brings him great happiness.  But I know about a few things, and it's probably the tip of the iceberg, and underneath that tip, there are scores of generosities we know nothing about.

Some of my loot from William included the cool hat and scarf, the hydrangea and the book

But I digress. We had just gotten home and William came breezing in, laden with flowers and armfuls of wrapped packages and bags, William does not do mundane.  He gets things you really, really like.  Who else but William would give me edamame, smoked salmon, coconut water, and lactose-free ice cream?

Chef Oliver at work

About the time William left, Max came in and fixed our supper, and we had a good time, so it turned out to be a really nice day after all.

from The Valdosta Daily Times, March 4, 1952

I have no memory of this, and as I was reading the guest list, I wondered why Mac and William weren't there.  Then the bright light of realization flipped on:  Mac was a 16 month old baby in diapers at the time, and Mama was 4 months pregnant with William. Duh.

The grapevine: faster than a speeding bullet

Never underestimate the power of the grapevine.  Early this morning, our phone rang.  "Mrs. Dewar, this is Melanie at the Winship Cancer Center in Atlanta.  Dr. Lonial is concerned about Mr. Dewar and wanted me to check on him."

 "Huh??"  I was totally perplexed. We had not called Emory.  We'd gotten in touch with our neighbor and family doctor Tommy Hobby in Valdosta, and Tommy had called in the prescription for antibiotics.

Sensing my confusion, Melanie explained, " Dr. Lonial heard that you came home from the beach yesterday because Mr. Dewar was sick.  What's going on?"

"How on earth did Dr. Lonial know about this?" I asked.

 "Oh, he's magic," laughed Melanie.

Later, Jimmy figured out the sequence.  Yesterday afternoon, Jimmy talked to Brad Burnette, who has a home in Amelia, to tell him we were headed home and why.  Brad told Billy Dobbs from Atlanta, who has a condo next door to the Burnettes in Amelia, and who was there this past weekend.  Billy spoke with his golfing buddy Rein Saral, an oncologist at Emory , and Rein told Dr. Lonial at the clinic this morning. Amazing.

Back home in less than 48 hours

A persistent cough, shortness of breath, and relentless fatigue have contributed a lot to Jimmy's overall puniness lately.  There's so much going on with him, it's hard to know what's what.  Is it the cancer?  Is it the chemo?  Is it the pine pollen?  Is he neutropenic? Is it his childhood asthma resurfacing?

He was feeling pretty rotten last week, so Friday I packed him up and took him and Andy to the beach, intending to stay for a while.  The salt air does him good.  I spent yesterday settling in, stocking the larder, and putting my plants out.  ( I've gotten where I haul my favorite six houseplants around with me if I'm going to be gone over a week.  They're getting a little elderly-looking these days, but aren't we all, and I've grown fond of them.)

It was not meant to be.  Jimmy awakened this morning, or rather, I awakened him because his breathing sounded funny, and when I put my hand on his forehead it was burning hot, with fever 101.  I called the doctor who prescribed Levaquin, and packed up all the food and the plants and the dog and my paints and canvases that I had intended to work on, and hightailed it back to Valdosta.

Jimmy'll probably have X-rays tomorrow to try to find out what's going on.  Lord, I hope it's not pneumonia again. 

Tempus fugit

I hope I'm not being maudlin, because I don't feel that way.  I really have been spending a lot of time going through old papers and photographs, and am a little preoccupied with the past.

Daddy died 27 years ago today, and he's as alive in my mind as if it were only yesterday that I saw his sweet smile and heard his voice.

It's a peculiar thing with old photographs: I was staring at this picture and it for a minute it looked just like my brother Mac did at that age, then it shifted and I saw William.  A moment later it morphed again and the smile was Mary Catherine, my niece's. 

Grandmother and Daddy

Every summer, my grandmother and her mother and sisters and all the children and some of the help would move up to their summer home in Hendersonville, North Carolina, to escape the stifling south Georgia heat.  The menfolk were left behind in Valdosta, to work and swelter. I have a lot of the wonderful letters exchanged between my grandparents during these periods of separation.

Here is an excerpt of one written by my grandmother when Daddy was about 5 years old:

"The children have had a lot of fun tonight.  They dressed Emily Attaway [a child in the neighborhood] up as a bride, with a long train, flowers, etc., and had Jr. for the groom.  They paraded up and down the street and were simply darling.  They would hug and kiss ever so often like they were crazy about each other.  I don't know what we are going to do with Jr., he is so affectionate.  Like his Dad."

The Jr. she's talking about is Daddy.  

Speaking of affectionate, I love the way she ends her letter: " Well, I bid you a goodnight, my darling, with a goodnight kiss, for I love you so"

A new favorite Roddy story

Roddy Vickers is a love, one of the kindest, most caring people in the world.  He oversaw the team of caregivers that looked after Jimmy's parents in their sunset years. His daughter Vicky was with my mother when she died - Vicky was brushing Mama's hair when Mama had a massive heart attack.

Roddy also has a great sense of humor.  He called Jimmy last week to wish him a happy birthday, and he and Jimmy were commiserating about their ailments.  Roddy told Jimmy he'd been to see his doctor recently, and the doctor looked at Roddy, then looked down at Roddy's chart, then looked back up at Roddy again and said, "Roddy, you look a whole lot better in person than you do on paper."

This is a very unflattering picture of Roddy, but it's all I could find on the internet.

Another good reason for being a packrat

While we've been home this past week, a project has been to sift through some boxes I've let pile up, to sort the wheat from the chaff.  I've thrown out bags of chaff, but have also unearthed some nuggets that make me glad I didn't just toss it all out.

I started looking through an old Bible, published in 1854.  I've recently become enamored with genealogy and know a lot more family history now than I did a few years ago. A few years ago, I didn't know who the owner of this book was. Or care.

This says "Edmund Parham's property, Dec 2nd 1855."   I know now that Edmund was my great-great-grandmother's younger brother who was born in 1833.  He died in 1864 in Spotsylvania, Virginia, fighting for the Confederacy in the War Between the States. 

If he had this book with him when he died in Virginia, I have no idea how it would have found its way back to his home in Georgia.  But no matter - what he has written in the front of the Bible is haunting:

"...my country though sad and forsaken, in dreams we visit thy seabeaten shore,

but alas, in a foreign land I awaken, and sigh for the friends who meet me no more."

Keeping a straight face

Average facial features are even and fairly symmetrical, like this:

 but sometimes you see faces that are totally cattywompus, like Brian Williams, the newscaster. I get so engrossed in staring at the angles of his features that I can hardly pay attention to what he's saying. That aside, he's a handsome man, and very good at his job.

Bittersweet

I got my Medicare card today with mixed feelings: happy to have it but a little bummed-out that a girl like me is considered a senior citizen.  Later, Jimmy rode with me to Winn-Dixie where I ran in to pick up a few things while he waited in the car.

"What are you smirking about?" he asked as I was putting the groceries in the back seat.  "I got carded," I gloated.  "YOU LIE!" "No, I'm not lying.  The little check out girl made me show her my driver's license, and she entered my birth date into the register."

"Well, you KNOW it was a new employee and they told her she had to log in everybody's birth date, even if they're 95 and on a walker."  Wrong thing to say, Jimmy, like being told, yes, that dress makes me look fat. He was right of course, but he didn't have to be so quick to burst my bubble.

Oh, and the bottle of wine I got carded for:

Happy 71st birthday to my sweet Jimmy

The man

Jimmy, Converse, and Briggs Smith

Briggs, a guide, Kenny Scruggs, Converse, Ed Crane, Jimmy in the shadows, and Micky Bright

Suenelle gave us these old pictures last week, taken many moons ago, on a hunting trip to South America, or something like that.  Jimmy looks so cute and sweet that I'm using these pictures to commemorate his birthday today.

Best In Show

It must have been tough being the judge this week at the Westminster Dog Show, with the outstanding lineup of dogs to choose from.  The wire-haired fox terrier won Best in Show, a choice I can't fault, although I would have picked the miniature pinscher, but only because my darling Andy wasn't there to claim the prize.

Today (A.A. Milne's 132nd birthday)

Today I have a dilemma: I don't know what to do about this blog.  I've never harbored any illusions about its being anything but a mildly entertaining diversion for me and anyone that visits the website, sort of like reading the Sunday funnies. For the last couple of months though, I've become more and more concerned about the privacy factor and security.

This paranoia stems from several things, primarily our credit card numbers being stolen and our email being hacked.  I'd shopped at Target a few times after Thanksgiving, using my credit cards, and a few weeks later, strange charges started appearing on my statements, like Skype charges from Tajikistan.  (Interestingly, someone just today forwarded me a New York Times article indicating that some of this criminal activity is coming from Eastern Europe.)

We'd gotten our credit cards reissued and passwords changed, but then yesterday our email was hacked and emails claiming to be from Jimmy went out to a lot of people.  I hope no one else's computer has been infected by this virus. I also hope that no one wired a substantial amount of money to Hong Kong, as some of the emails requested.

The security setting on this blog is Public, which has never bothered me before, but as I said, all this internet craziness makes me nervous, and I don't want to give the bad guys any more ammunition.  I've been thinking that maybe I should change the setting so it can only be viewed by people I make it available to.  I'd certainly include any interested followers, but I really don't know who reads this thing.  I'd say send me an email, but emails aren't too appealing at the moment. A telegram, maybe?  Morse code?  Smoke signal?

What to do, what to do...ah, the problems we face in this new world we live in...