John Goes Home

John's fight is over. He went peacefully at 12:26 Friday afternoon - Holy Friday in the Orthodox Church. He was granted something we pray for in every liturgy: a Christian ending to my life, painless, blameless, and peaceful, and a good defense before the fearful judgment seat of God. He was alert until the very end, unable to do anything but look into my eyes; that was more than enough. Jen and I were there, Father Matthew came in time, Sister Nora (the dear hospital chaplain) was with us, and John's favorite two nurses were there. John shed tears while Father prayed, then I saw in his eyes when he left his body. It was everything I could have asked, just 40 years too soon. But that is in God's wisdom, which is much greater than mine - something we should all be thankful for!

Viewing will be Tuesday from 4 to 8 pm and Wednesday morning from 9 to 10. The funeral  will be Wednesday at 10 am, followed by burial, then a meal. Everything but the burial will be at St. Mary's Orthodox Christian Church in Goshen. Everybody is invited to everything, so please come if you can! 

I am so grateful to all of you for your love, support, prayers, and the thousand things you've done to help us out  this last year. We love you all!

Heartwarming Heartbreak

John is back at Goshen Hospital, and it's good to be back home. RiverCrest sent him back for a massive GI bleed which turned out to be an oozing hemorrhoid - God bless hemorrhoids! RiverCrest is excellent but John is complicated. And non-linear. He's in ICU in the same room he's been in before - I told them that if they ever moved him to another room, I'd come in and kiss the wrong man. There's been talk about engraving his name in the fire extinguisher case right outside his door. 

Nothing is going well  for him now. His last sputum culture showed MRSA and Pseudomonas, and he also has a UTI - his immune system is not working well. For the medical out there, it seems that we're looking at sepsis and ARDS. For the normal folks, the infection is massive and his lungs aren't working well. He's needing more Levophed to keep his blood pressure up, and more oxygen to keep his sats up. He is weaker and less alert that he was a few days ago. Everything is being done that can be done and, without a miracle, he has very little time left. 

We had a special - and emotional - day today. He was very much awake and alert this morning, so I said all the things to him and I needed to say. After enduring that he took a well-deserved nap. This afternoon I brought the dog in to visit with him. He and Jethro hadn't seen each other since John left for work on January 15th. After some preliminary petting, sniffing, and nuzzling, Jethro suddenly sprang up in the air, landed in bed with John, and lay down beside him. John lifted his arms up - no small feat right now - and put them around the dog. They both fell asleep that way, and slept for almost an hour. Before they fell asleep Jethro had the biggest smile I've seen on him since January, and John had one tear running down his right cheek. I sat there with one hand on John's hand and the other on Jethro's shoulder, and enjoyed seeing my two menfolk reunited. John slept more soundly than I've seen him sleep for a long time, and his oxygen saturation was the highest it was all day. They visited with each other for over three hours. I left John still sleeping, and brought home a very relaxed - and rather pensive - dog. For him, the mystery is solved - he knows where his Daddy is, and I'm sure he knows Daddy doesn't have much time left. I'll take him back every couple of days for as long as I can.

On the human front, Jen is flying in on Wednesday evening and I can't wait. It will be good to have the whole family here. I'm thankful for my little family, and for the 34 years I've had with the world's only perfect man. I have no complaints. After all, I've never lived in a refugee camp and it's been years since we've had snipers or IEDs in Topeka. Jen has me pegged. She says that I'm not a glass-half-full person; I'm a the-glass-is-half-full-and-I'm-not-really-thirsty person. I do believe she's on to something. 

John Gets His Picture on the Post Office Wall

John is having a new experience - that of having his photo on the Post Office wall. Katherine, our post-mistress, swore to me that she would put it on the Most Wanted Wall, not the FBI Most Wanted wall - a very important distinction. But the Post Office is an important center of information in a town that has no newspaper, in a county that doesn't have a daily newspaper. If you live in town you don't get mail delivery, you have a post office box. When you go to pick up your mail - leaving your car running with the keys in it, of course - you stay a while, talk to folks, and catch up on the news. And get to see John's picture on the wall.

And since he is the world's only perfect man, he's gorgeous.

As of March 18th, he was spending an average of 6 hours a day up in the chair and gaining strength. He can't do anything in a linear fashion, so he had to throw a monkey wrench into things. I came in to see him on Tuesday morning (March 20th), and his left leg was the color of an eggplant. He'd developed a blood clot in a vein. So he was put on anticoagulants and bedrest. He relaxed after I told him that his leg was cool but not cold and he had pulses all the way down it, making this a nuisance but not crisis, and got worked up again when I told him that he'd have to stay in bed for a while. He really likes the chair. The leg looks almost normal now and his pulses are even better, so I hope the chair is in his near future.

In the meantime he's been doing his exercises in bed and the vent weaning is moving right along. Yesterday his trach was changed for a smaller size (which will be more comfortable) and with a disposable inner cannula (easier to keep clean - don't worry if this part makes no sense to you; it's really for the medical folks out there). He's been off antibiotics for a week and is doing fine without them - I think the pneumonia finally bit the dust. It is amazing how much better he looks and feels. Today we watched the UK game together and had a wonderful time. This is the first time in the tournament that he's felt like staying awake and focused for the whole game.  

So when you come to Topeka to see all the sights - both of them - be sure to stop by the Post Office and take a look at John's picture on the wall. He's gorgeous!

I Get John off Drugs

It amazes me how much trouble John can get into when my back is turned. It has to be turned a lot now, since he's an hour away and I'm working. (And the puppy bladder has its limits. And I really need to give up sleep for Lent.) Anyway, there've been some stretches of time that he wasn't answering my text messages and I wondered what was up. 

I found out this morning. When I got there he was stoned. I hunted up his nurse and found out that he's been asking for Ativan for shoulder discomfort - the kind you get when you stay in bed all the time. Ativan isn't for pain; it sedates you and makes you stay in bed all the time. He's been compounding his problem as well as sleeping all day.

So I had the appropriate discussions with the appropriate people - including John, who will probably never think of asking for Ativan for the rest of his life. Ativan and Morphine orders have been cancelled. He now has an order for Tylenol. (John is sensitive to drugs that sedate people, but even he can't get sedated on Tylenol.) He slept all of today including his therapy times. Physical Therapy will re-evaluate him tomorrow, since he was stoned when they tried to today. Speech therapy will re-teach him all they taught him today. Occupational therapy gave up and left him alone. I convinced the nurses and nurse practitioners that he is normally a highly-functioning, independent grown-up - which didn't seem likely today. John says he's sorry.

There are two morals to this story: First, leaving husbands unattended in hospitals is iffy. Second, a moderate amount of medical knowledge isn't as much as it seems to be. All he knew was that he got Ativan at Goshen Hospital (he was - when he was first entubated and needed sedation) and it made him feel better (no comment). He had no idea he was nearly unresponsive for hours after getting it. The man needs a wife.

Meanwhile, the ventilator weaning is going very well. (Don't worry if I lose you here.) He's now on SIMV; FiO2 is down from .40 to .30, rate is down from 12 to 4, the next thing to start weaning is pressure support. For the non-medical: he's doing more on his own and needing the ventilator much less. He failed every attempt to wean a few days ago at Goshen; he got too frightened about having the setting changed. Which means that his being stoned on Ativan for a few days may be a good thing, because he slept through it. I told him today - after he'd started waking up a bit - what his vent settings were, and just thought that was cool.

Let me sum up: There will be no more sedation. Therapy should actually work when he's awake. He'll eat better when he's awake. The vent weaning has gone very well while he wasn't awake. And he says to tell everybody he's sorry.

John Goes to Boot Camp

Still all good news. At 4 pm today John left Goshen Hospital for RiverCrest in Mishawaka (on Jefferson near Byrkitt, for you locals). All he's left on is the ventilator - no IVs, no feeding tubes, no pic lines. He still has his chemo port for IV access and blood-drawing. And he still has the foley - I have no clue why and predict it will go away soon. He did fine on the trip and for the settling-in part of arrival. I wasn't able to go along with him - it would have pushed the puppy bladder to 14 hours, way beyond reasonable limits for his age. So I'll go see John tomorrow - it's an hour drive one way - and do some other errands on the way: Post Office, bank, and Best Buy to get him a Kindle of some kind to use for communication (before he's off the ventilator and can talk) and for internet access, and groceries on the way home. We'd love to get 2 iPads, but there's no way we can afford that. We would consider a pair of carrier pigeons if they weren't extinct.

They gave John a big send-off at Goshen; we promised to come back and visit when he's walking and talking. John's survival is the most excitement they've had up there since the decision came down to change the staff uniforms. It does wonders for unit morale when someone who was given no chance manages to survive anyway. They just didn't know John like we do - now they know him, too, and are very fond of him. 

He's at RiverCrest Hospital, 1625 East Jefferson Boulevard, Mishawaka, IN 46545. Main phone is 574-255-1400. Visiting hours are 8-8, and immediate family and clergy are welcome any time. Of course he can't talk on the phone yet, but he can read email and can text. And cards are very welcome!

I have no idea how long he will be there. Weaning someone off a ventilator has no set time; people are so different. We have one doctor saying it will never happen (Dr. Grinch, of course), and another saying John will be quick and easy to wean. I expect him to be nearer the second. We'll all find out together.

Thanks for keeping up with us - all your comments let us know that we're not doing this alone. Believe me, we will spread the word if we need anything. Right now, we need to know that the outside world is still out there, and that some of it loves us. Thank you all for that!

John Gets Vertical

There's nothing but good news today. John got up in the chair yesterday for 1 1/2 hours, today for 3 hours. Yesterday it took 2 people to help him get there; today he did it by himself with an aide to handle all the tubes and wires. Now that he has the trach, he's progressing rapidly in the eating department - liquids yesterday, soft today (which included scrambled eggs for breakfast - he was one very happy man). He's off all the IVs except for some remaining antibiotics. The trach is healing well - not yet to the point of rigging him up to talk - but he's back to texting, so we can communicate when I'm not there.

The plan is to transfer him to RiverCrest in Mishawaka - it's an L-TACH (long-term acute care hospital) - for weaning off the ventilator and boot camp rehab. He's looking forward to it & ready to get to work. It's possible that he'll go tomorrow, but Monday is more likely. He feels good enough to be impatient to be up and around.

Most of the medical crew is floored by his recovery. Those of us that have known him for a while - his cardiologist, pulmonologist, and me - aren't floored but are relieved. I'm finally relaxing some. The dog is less depressed by Daddy's absence - two days ago I packed up John's house slippers and razor to take to him; Jethro watched, his eyes lit up and his ears stood up, and I could see his furry mind figuring out that Daddy must be okay and out there somewhere.

John has a lot of work to do; he's done rehab before, and is looking forward to it. I have a lot of work to do; I haven't managed the finances or done taxes in a while, and I'm not actually dreading it. And someday I'll vacuum and clean the bathrooms . . .

John Gets His Throat Cut Then Kisses Me

Hi out there!

Today was a very good day. First, PT came and helped John to stand up by the bed for about 5 minutes, and to walk 4 steps - sounds simple, but isn't! He went to the OR this afternoon for a tracheostomy - so the tube connected to the ventilator goes through a small hole in his throat instead of through his mouth. It's much more comfortable for him. And after it heals, he'll be able to eat and talk. It also will make it much easier for him to get off the ventilator and breathing on his own; it takes a lot less work to breathe through a short, medium-diameter tube than through a long, narrow tube. He was very excited about getting it done. On (probably) Friday or Monday he'll be transferred to a rehab facility in Mishawaka (the closest one that takes folks on ventilators) for boot camp rehab, to get him up, moving, stronger, and breathing on his own. He's also very excited about that.

The trach went very smoothly and quickly. After he woke up from the anesthesia he was grinning from ear to ear, delighted to have the tube out of his mouth. And we haven't been able to kiss each other for over a week; we probably looked like a couple of teenagers making out (very gray-haired teenagers). It's amazing how much you miss that after almost 34 years of marriage. I told him he's much more fun to kiss than the dog.

So now he's spending a few more days in the hospital to give the trach time to heal well, and me time to tour both of the facilities he can go to. Both are in-network for our insurance, thank goodness, and both have available rooms. So I'm looking for the one that's going to be more aggressive in rehabilitation. I won't be able to see him every day after he is transferred - he'll be about an hour away - but it will be so good for him. And he's chomping at the bit to get up and working.

Thanks for listening, thanks for caring, thanks for being there! And sleep well.

John Becomes One Step Above an Innert Mass

John looked better today, and said (wrote a note to me - he can't talk while he's entubated) that he felt like he was getting better. They haven't gotten as much junk out of his lungs today; it seems that yesterday cleared most of it out. He was awake when I walked in the room, which he hasn't been all week, and was much perkier. He stayed awake all the time I was there, writing notes to me and holding hands. (I know - Mama told me we were too old to hold hands in public when I turned 25. I paid no attention. What can I say? I adore the man.) I put his glasses on him for the first time since last Sunday - thought it was time he had to really look at me - he didn't mind too much.

So now we're all waiting to see how he does. It's still a matter of beating a very severe case of pneumonia: getting & keeping his lungs clear, and building up enough strength to be able to breathe on his own, then get up and start moving. The PT people should see him again tomorrow. I'm feeling more hopeful tonight that he'll survive this. He still has a long road ahead, but he's determined to do it and is working hard. His greatest asset at this point is stubbornness. He has a aunt who says that he can become one step above an inert mass - that's just what he needs right now.

I'm trying to head off to bed early tonight. The fatigue of 5 weeks finally hit me today, and I kept falling asleep standing up in church. (Orthodox Christians always stand up in church.) And I'm feeling the fibro today. So my most immediate job is to take care of myself. Jethro doesn't need two sick humans to deal with, poor creature.

On reading back over this, it seems a bit scattered and disorganized - so am I at this point. So goodnight all - sleep well!

Dr. Patel Rides to the Rescue

I said I'd do better keeping you up-to-date on things - and things are happening. So here I am again.

This morning John's oxygen level was still good (sat of 1.00 on .40 O2, for the medical out there), but he was getting worn out with the effort of breathing, and had junk in his lungs that he couldn't cough up. Dr. Grinch (the intensivist) called Dr. Patel (a pulmonologist) in for a 2nd opinion, which was great. We've known Dr. Patel for a few years, he's taken care of John before and knows us, and I have a great deal of faith in his judgment. He saw John and talked to me, and strongly recommended immediate entubation and aggressive treatment of pneumonia, and disregarding of the red herrings (like cancer and congestive heart failure, which are both well-controlled right now). So between the two of us we convinced Dr. Grinch to do what Dr. Dunnick (cardiology) and I have been wanting since Monday, and what John was asking for. (That's what happens when you're married to a critical care nurse for a few decades - you request entubation. Be warned out there!)

They put the ET tube in John and put him on a ventilator, where he can rest, be suctioned to get secretions out of his lungs, and can have some secretions sent to the lab for culture and sensitivity, which will tell us if the antibiotics he's on are right. When they put the tube down they immediately suctioned up a great glob of thick brown secretions that he hadn't been able to cough up (apologies to the squeemish out there, but it's me), and he immediately relaxed. I talked to his nurse a bit ago; she said he's been much more comfortable and is resting much better. He should get a good night's sleep tonight.

And so should I. Today has been quite an emotional roller coaster. Before I talked to Dr. Patel, I was very afraid I'd be a widow by sundown. But Dr. Patel is more optimistic about his prospects. And after all, it's his specialty we're dealing with here. So I'm more relaxed, John is more comfortable, and the dog is still anxious and depressed about where Daddy is. And of course I can't explain things to Jethro; he just knows that Daddy's gone. On the practical level, I did finally get to the grocery store today. Otherwise I'd have been reduced to eating Jethro's food. Which would not help his anxiety. And probably not my digestive system. :)

So to sum up: the cavalry arrived in the form of Dr. Patel, and everybody is better except Jethro.

Thanks to all of you for your love and prayers! Now I'm off to bed. Goodnight, all.

The Joys of Parentheses. Or - I Cause a Ruckus

Well, we got back from Indy after 4 weeks of John being in IU Methodist hospital - got home last Friday (Feb. 11th). John didn’t get the mitral valve replacement we'd hoped for, because the radiation from 1974 that damaged the valve had caused so much calcium to collect at the base of the valve that there wasn't enough good tissue to sew a new valve to. But after a permanent pacemaker (to stand in for the conduction tissue the radiation damaged), an EP study and 4 ablations (to stop irregular rhythm caused by damaged tissue), and a stent (to deal with a blockage caused by - you guess it - radiation), he was on new drugs and in much better cardiac shape that he was before (when he passed out at work and started all this ruckus).

Thanks be to God for parentheses; I couldn't talk without them.

The last few days before he came home, he came down with bronchitis. He got 24 hours of IV antibiotics and came home on oral ones. But by Sunday he was very short of breath, went in to the Goshen Hospital ER, and was admitted with severe pneumonia. Then more ruckus started, set in motion by me. Hard to imagine that.

He's been in ICU since, and is quite sick. The doctors disagree about what to do with him. The intensivist wanted my permission to let him go, since he had obviously been disabled for a long time. The oncologist wanted me to let him go because the problem was a rapid worsening of lung cancer (also caused by radiation). The cardiologist wanted him to be treated aggressively because he had pneumonia. Having power of attorney, I told all of them that:

1. Ten days ago he was walking in Indy without assistance and not needing oxygen. Then he started coughing up brown stuff. He does have pneumonia.
2. After the cardiac work in Indy, he was doing fine with the new meds.
3. When all of this started he was at work, not severely disabled at home.
4. This current crisis came on quickly when he started coughing up stuff; cancer doesn't spread that fast, but pneumonia does.
5. John & I have talked extensively about what he wants done in what circumstances. He wants everything done if he has a problem that can be gotten over.
6. This isn't the 19th century. Pneumonia is still fatal at times, but it can be gotten over.
7. Here's what we're going to do: aggressive antibiotics, aggressive nutrition through an NG tube, Bipap to support his respiratory system, and some sleep.

So that's what they did. And he's making small steps in the right direction. And now they all agree that it really was pneumonia after all. (I used to work with cardiothoracic surgeons; I can tell off any physician that I need to.) His blood gasses on Monday were catastrophic, Tuesday's were merely horrific, and Wednesday's and today's were normal. This chest X-ray is improving. He's getting stronger and feeling better.

There's a long way to go. "Stronger" means able to sit on the side of the bed for 2-3 minutes at a time. But he's alert, laughing at jokes, and rolling his eyes at the right political news (No, I won't elaborate. So don't ask.). He is sleeping a great deal, which he needs after 4 weeks of trying to sleep in a hospital. I'm glad to be back at home, with my own bed and fridge and dog.

After 4 weeks without any income and with the expenses of being in Indy, I'm back at work. It is also great therapy for me - a little bit of normal life. I'm not spending a lot of time in the hospital room because John tries to stay awake if I'm there, and he needs to sleep right now. In the morning I run errands, go see him, go to work, see him after work, run more errands, and try to get home within the limits of the puppy bladder (successfully, so far), then look after the house. I've had a few times of emotional decompensation, but am generally doing well. Father Matthew is taking good care of both of us, and I have a wonderful support system here.

Two out of 3 docs - including the first one that wanted me to let him go - now think he may live through this. I think he has a decent chance. But nobody knows, of course. Your prayers are welcome, as always. I'll try to do better keeping you all updated. So much has happened so fast, that by the time I was ready to tell you about one thing, there were 2 or 3 others that needed to be covered. So I got myself hopelessly behind. And in Indy I was spending about 10 hours a day at the hospital - if I wasn't there, I was generally asleep.

As always, any of you that are on Facebook are welcome to look me up. Though I haven't been very good at communicating, you're all in my mind and heart. Love you all!

I Finally Figure Out How to Get Around the System

Hi, Everybody!

I still can't access my contact list on the home computer, but finally figured out that I can cut-&-paste your addresses from replies in my Inbox - duh. You can all get updates from Indy now. There is no escaping the Hockman news.

John is much better. He got moved out of CCU and up to the stepdown unit on Friday evening. Yesterday he got up and walked a lap around the (large) unit, looking like he's been walking for years. He's off the IV meds, off oxygen most of the time, still on the monitor. Of course he's tired and out of condition, after being in bed for 3 weeks. Now we're down to getting his meds tweaked for him to go home on - keeping his clotting time, potassium, and magnesium where we want them without having to do IV stuff every day chasing them. How long that will take you never know, but I expect him to get out in a few days. We'll stay here in Indy for 3-4 days after they let him go. If he decides to get exciting again we'll be right here, and he'll have time to gain some strength before making the trip home.

And yes, we did see the Super Bowl. Like most folks here, we will be glad to see everything get back to normal - streets re-opened, traffic down, gas prices back down (they went up 40 cents a gallon for the weekend), and hotel rooms available for less than 6 months of mortgage payment. I can move back into the hotel at 3:00 this afternoon. I've had a great time staying with my friend and playing with her cats. And Indy is happy that the Giants won. Indy loves Eli because of his brother - I'm old enough to love both of them because of Archie. They're both such nice boys. And it was a good game!

I'll keep you all posted, now that I've figured out how to get around the system. :)

Joan.

He Walks! He Talks!

Hi folks!


John is actually doing very well. I went home Sunday afternoon, did laundry, picked up (2 weeks of) mail Monday & paid some bills, and came back Monday morning. DeWayne across the street is a treasure - he & his son went to Panera today and brought John's car home for us. It's been sitting there since he passed out at work and went to the hospital by ambulance. One less thing to worry about!


Today John took 2 walks outside the room in the hall, and stood up in the bathroom and did his own bath. He spent a good bit of the day up in the chair, and took some naps. All that's really left to do is switch him from IV amiodarone to pills - that's the drug that's keeping him out of ugly heart rhythms. And of course he needs to build up strength, after 2 1/2 weeks in bed. He looks great.


The docs haven't set an expected date to send him home yet, but I'm thinking he'll likely get out early next week. And we'll stay in town a few days after that. I have the hotel booked from next Monday to the Monday after that. And from Thursday to Monday I'll be staying with the friendly resident that's taking me in off the streets. The media folks are already moving into the hotel - mostly roadies at this point. The town is getting crazy. I had SO hoped to watch the game from a safe distance, but no such luck. But at least I'll have a roof over my head - that's more than most patient families will have.


So all in all, things couldn't be better.
Or: We're in pretty good shape for the shape we're in. :)

From Indianapolis

We've been in Indy for 2 weeks with John in IU Methodist Hospital. He passed out at work on the 15th - fell right on a huge cardboard box half-full of plastic cups so he didn't hurt himself - scared some employees, got taken to Goshen Hospital by ambulance, and on the 16th was sent by ground transport to IU Methodist, where IU's cardiac service is. He got a heart cath on the 20th, went into complete heart block (which we've been waiting for for 3 years, due to radiation damage to his conduction system), got a permanent pacemaker on the 23rd, started having V Tach (rapid & ineffective beating of the lower half of the heart - not a good thing) on the 25th, got an EP study (they took him to the cath lab & crawled through his conduction system) with ablation of some suspicious areas (cauterized the places that might be the source of said V Tach) on the 26th, and got a stent put in his right coronary artery on the 27th. They were planning to discharge him tomorrow (the 30th), but last night he started having some more V Tach, so they're tweaking his medicines to fix it, and he may go back for another EP study. This tweaking can take a long time, depending on how long it takes them to hit on the right combination for a particular patient. So we may be there for a while.

We were hoping to get out of town well before the Super Bowl crowd arrives, but no such luck. All the hospital families are scrambling to get a roof over their heads, since every hotel room in a 50-mile radius is booked for the game. I have to be out of the hotel by noon Thursday, since it is totally booked by media and they are arriving early. I thought I'd be sleeping in a chair in John's room (I went to college - I've slept in worse places than that), but a sympathetic resident offered me her spare bedroom and bath, and I'm taking her up on it. So I'm okay.

Jethro the dog is boarded at the vet and having a wonderful time. He and Willie play and romp, and he comes home and spends a week sleeping it off. This is doggy vacation for him. Good thing somebody's getting a vacation!

Concerning Casseroles

I find great hope and consolation in casseroles.

When I was little and I was unhappy about some event in my life, Mama would tell me to go think of something good about it.  I remember one time when I was unhappy that Daddy was going out of town on a business trip. Mama said to go and sit on the couch until I thought of something good about it. I remember sitting there and wracking my little brains until the light bulb went off. When Daddy was out of town, we could have casseroles for dinner!

There's some backstory here. Daddy wouldn't eat leftovers or casseroles - I think because he was a Depression child, and leftovers and casseroles were for poor people. Mama was also a Depression child - for her, leftovers and casseroles were for reasonable, responsible people. So Mama and I had them for lunch while Daddy was at work. (For some reason that didn't bother him. He was okay unless he had to eat them himself.) For me, leftovers were a second chance at something that had tasted really good yesterday, and casseroles were the greatest food in the world.

So all that started me looking at life in a certain way. Some folks think I'm optimistic and some think I live in denial. I think I look at life logically: ignoring the good is no more logical than ignoring the bad. And logic dovetails with theology here. If I believe that God is all-loving, all-knowing, and all-powerful, then it is only reasonable to trust that whatever happens in my life is for my good. Good is not defined here as comfort, earthly happiness, or preference. We're talking here about eternal good - something I can't reliably determine, being finite and human and sinful and all that.

So anyway, that brings us back to Indianapolis. Everybody here expected me to be upset that John went into complete heart block; if he had to do it, there's no better place in the world than on the IU Methodist cath lab table. I was supposed to be unhappy that he needed a permanent pacemaker; it has allowed them to control his heart rate more aggressively, which seems to have taken care of his problem  with holding fluid and needing strong diuretics. I was supposed to be in great distress that he went into V tach, needed to be cardioverted, and got an EP study and albation; I'd much rather he did it here than at home, and thrilled that he got ablated and fixed. When the stent came along they felt so bad for me that they gave me two free meals; I'm glad the lesion was in a stentable place and am eager to see how much difference that makes in his energy level. I would tell Mama that all of this is good. I'm not being brave or self-sacrificing or anything lofty and commendable. I'm being logical. Which may or may not be better than being brave and self-sacrificing - that's another discussion.

So anyway, this is the week for casseroles - a very consoling and comforting food. I suppose the moral of all this is that when life throws things at you, just make a casserole and enjoy it.

With a Nod to Tennessee Williams

Like Blanche Du Bois, I am depending on the kindness of strangers.

We're still in Indy and John is continuing to provide entertainment and educational opportunities for all. His cath showed more mitral regurgitation (valve opening too wide) than mitral stenosis (valve opening too narrow), and the tissue around the valve was too calcified for them to be able to suture a mechanical valve to anything. So the best way to improve things was to slow his heart rate down. While the docs were discussing that, John went into complete heart block at a rate of 30-40, thus solving their dilema for them. So he got a pacemaker, and some changes in medicines allowed by the pacemaker. Then he started having rapid abnormal rhythms (V Tach, for the medical out there). Amiodarone didn't control it completely, so after a night of sustained V Tach requiring cardioversion (mild electrical shock), he went to the EP lab for them to find the tissue initiating the abnormal rhythm and albate (cauterize, get rid of) it. John threw a monkey wrench into the proceedings by refusing to go into V Tach in the cath lab. So they nosed (cathetered) around his left ventricle, found several places where conduction problems were indicated, and ablated those. Whether any of those were the true offender remains to be seen. Probably at 2 AM some day. That's when he likes to go into V Tach. Now about all those strangers:

Everyone here had been so kind to us. John's nurses love him - understandably, since he is the world's only perfect man. But they are also being very nice to me. I have solemnly promised not to answer call bells on any other patients, and they are letting me do all kinds of things for John and haven't thrown me out yet. Doctors and nurses that took care of John other places keep dropping by the room to visit and see how he's doing. They've begun to look for me in the cath lab waiting room, since I've spent 3 days there in the past week. The cafeteria cashiers chat with me. And the lady that I pay to get out of the parking garage shows me her knitting progress for the day, and looks at mine. But the greatest kindness of all was necessitated by the NFL.

In case you've missed it, the Super Bowl is coming to Indianapolis. This means a lot of money and a lot more inconvenience. What hurts the hospitals is that most family members are being kicked out of their hotel rooms. This isn't being mean or just wanting more money - the rooms have been booked for months for the game. The hotel I'm in is hosting media in all it's rooms, so I have to be out by noon on Tuesday. I've known this since we made our reservations - never dreamed it would be relevant  - I underestimated John's ability to come up with dramatic events in a short period of time. There are no hotel rooms available within an hour of the hospital. So I'd been thinking I'd end up bunking in the recliner in John's room. The hospital has showers for family members, and John has a pair of PJs that I could run around in and be decent. But a stranger came to our rescue. One of the residents that has taken care of John is taking me in Tuesday noon, for the duration. I am overwhelmed by such an act of kindness, and am very grateful to her.

So I thank all the kind strangers - that have taken me in, not thrown me out, talked knitting with me, smiled in the cafeteria line, laughed in the cath lab waiting room with me, listened to my hospital horror stories, and respected me as a nurse. I'm grateful to Fr. Nabil and Fr. Radislav (not strangers!) who have come and prayed with us. I'm grateful to all the doctors-nurses-nurse practitioners-fellows-residents-interns-miscellaneous who have put their wonderful brains together to figure out what is best to do for John; we can tell that they care, and he is better for their care. Not everybody who depends on the kindness of strangers has to end up like poor Blanche.

On Being Off the Clock

I'm no good at being in a hospital and not on the time clock. After 20 years, when I'm in a hospital I want to DO THINGS. Things that visitors can't do, aren't supposed to know how to do, and certainly aren't supposed to want to do. There was an emergency on John's unit today; I sat there gritting my teeth and repeating to myself, "I'm not on the clock. I'm not on the clock .  .  ." Nurses are nice to me; after determining that I'm harmless, they let me do lots nursing things for John. Doctors are nice to me; they speak medical shorthand to me and I translate when John needs it, which isn't often after 34 years with me.

I must still ooze hospital from my pores - today a cafeteria cashier asked me if I wanted to pay with my employee card. I do still have the walk. John says that we'll be walking along together at the same speed, and when we walk through a hospital door my walking speed increases and I leave him behind. And I feel so at home in a hospital - any hospital, but the bigger the better. Today when I came back with my lunch I walked right past John's room; I was looking at the storage layout of the unit. Hospitals are in my blood. There's just nothing to be done about it. 

Now to update everybody on John: After a bunch of testing they have demonstrated and quantified his mitral valve stenosis, and decided that they can repair the valve instead of replacing it. It will be a cath lab procedure instead of heart surgery, which is always preferable. They will thread a catheter from his femoral vein (the one in the groin) up to the right side of his heart into his right atrium, through the atrial septum to his left atrium, and then to the mitral valve. They will inflate a balloon in the valve opening, to spread the valve leaflets out and let more blood get through. His cardiologist said that surgery can be done if necessary, but this is certainly worth a try and will almost certainly do the trick. His mitral stenosis is quite severe, which is what I've been telling everybody, no matter how minimal it looked on echo.

Nothing will happen tomorrow, so we'll just be hanging out. We really enjoy just hanging out together. They'll do the valve on Friday or Monday, depending on the schedule. He should go home all fixed up. And I'll have learned my way around another med center. Off the clock.

It's a Nuisance, Not Crisis

ROAD TRIP!

I'm in Indianapolis, after an adventurous day. This is actually quite typical of my marriage to John. He went to work yesterday and passed out, falling on a very convenient box full of plastic cups so he didn't even get a bruise (no word on the fate of the cups). So after scaring his co-workers and taking an ambulance ride, he seems to be fine.

Discursus for background: He had Hodgkins Disease when he was 19 and got 4 rads of radiation. He's been dealing with the results of the radiation ever since - 2 heart surgeries for scar tissue in his coronary arteries, 1 brain surgery, carotid artery surgery, lung cancer, and scarring of his mitral valve. And all that radiation didn't work anyway. The Hodgkins came back as our 3-month anniversary present. He got chemo that time, and it did work. If he'd just waitied a few years until the chemo protocol was out, all this could have been avoided. And life would have been much less exciting. 

Anyway: We've been watching the mitral valve for a couple of years. The scar tissue is narrowing it and causing congestive heart failure. They kept him in the hospital overnight to be sure he was okay, then his cardiologist came in this morning and said he was sending him to IU to get him valve replaced. Today. ASAP. So John left by ambulance a little after noon. I followed after getting the dog boarded, the trash to the street, John's things packed, my things packed, food packed for the week, the dishwasher unloaded and reloaded, and I don't remember what all else.

As I said, this is typical for us. Whenever he has an emergency his mother just sighs and says, "It's a good thing he married a nurse." And he does have emergencies. (NB - He's never had a crisis. To a critical care nurse anything that can be gotten over is a nuisance, not a crisis.) And he's the least dramatic person on the planet. When he was diagnosed with lung cancer last summer and told he'd probably survive a few months, all he said was that he would try to live long enough to do the taxes. This is not duty and self-sacrifice on his part; there are few things he enjoys more than doing taxes. This was an incentive toward survival. (I'm not too normal myself. The first thing I thought - and, of course, said - was that at least he could have a port for chemo this time. His last chemo was before ports were invented. The oncologist was shocked. He shouldn't have been. He's known me for years.) The incentive worked; this kind of cancer doesn't go into remission but it's at bay, reduced from before chemo, and he's been promoted to maintenance chemo. So paying taxes is actually good for you. 

So anyway, road trip. We're here for a week - or 2 - or goodness knows how long. Thankfully I have an understanding boss and veterinarian. Jethro the dog is happy as a clam. Being boarded at the vet's is vacation time for him. He has a wonderful time, then comes home and spends a week sleeping it off. We may need a week sleeping it off, too. When we all get home we'll form a mammal mound on the sofa, put on ESPN, and recover from it all. Until the next excitement comes along. It really is a good thing he married a nurse.

John and His Drugs (by John)

Folks:

It occurred to me this morning that I need to update people on what's going on with me, especially since it's been an adventurous past few days.

I went in last Wednesday for my normal chemotherapy, and blood work discovered that my potassium was quite low. I wound up staying at the hospital for about 9 hours while some IV potassium ran in.

But Dr. Suh (my oncologist) also showed us a CT scan of my chest which showed a 1.1 cm. x 1.2 cm. nodule in my lower left pleura. Without doing a biopsy, we don't know for sure what that nodule is, but she had to go on the assumption that it was cancerous, even though I am doing much, much better than I was before chemotherapy. Dr. Suh decided to switch one of my chemo drugs from Alimta to Taxol. Taxol has a different mechanism of action on cancer cells than Alimta, and she thought that the difference would be something to try. So Friday last I got my first infusion with the Taxol. Turns out that the emulsifier for the Taxol causes an allergic reaction in about 30% of people, and I was one of them. So I got to spend the rest of the day stoned on Benadryl, and slept real well Friday night.

The upside of the Taxol is that I don't have the crushing fatigue that I did on Alimta. I bounced back pretty quickly, and was able to go to church on Sunday, something I would not have been able to do on the Alimta. There is some joint pain associated with the Taxol, but it's nothing I can't live with.

That's it for now. Thanks again for your prayers and thoughts.

John

John Has PET Scan - Jethro Wonders Why He was Left Out

Folks:

I had that PET scan on Wednesday. The results were, well, rather neutral. The lesion in my left lung has decreased in size, but there it still evidence of cancer in my left ribs, and right hip. Also, there is a lesion (1 cm. by 1 cm.) on my left pleura, which my oncologist, Dr. Suh, is trying to decide what to make of. She is consulting with the Goshen Hospital radiologists, and her former colleagues at the University of Houston (where she did her fellowship) to get some answers, and possibly some new direction for my chemotherapy.

Joan also has an interesting thought about all this. I had X-rays of the chest done in February before surgery on my throat, and there was no evidence of anything growing in my lungs. Yet by April, I was definitely symptomatic for cancer. This says that the cancer was pretty fast-growing. Since there was a six-week gap between the diagnosis of my cancer and the beginning of my chemotherapy, who knows how much the cancer had grown? In other words, the cancer my be responding well to the chemotherapy, and what we are seeing on the PET scan on Wednesday is actually a great improvement over what was really there in August. We'll never know, because the gap between my PET scan in July and the start of treatment in August was too great.

One last thing: as Joan puts it, Dr. Suh is confused by the PET scan, but happy with the organism! The organism is, of course, me, and she (and Joan) are happy with the progress I have made in getting back to work, getting some strength back, and overall improving every week. It seems that no matter what the PET scan shows, I am getting better. And that's great news.

Thanks for your prayers and concerns. I just wanted to give you all and update.

John

John Goes to Work (by John)

Folks:

Just wanted to let you know that I was blessed to get to another milestone in my recovery from CHF and cancer: I went back to work at Panera yesterday! I did well, even though due to a few call-offs and something the AM needed to do, I wound up staying 2 and 1/2 hours extra (total of 7.5 instead of 5). It went well, though I was tired when I got home last night.

I am only working 3 days per week, and about 15-16 hours total per week until I get my stamina back, But getting to work at all was a first big step, and I am looking forward to what will happen as my strength at work grows.

The next big event will be October 12th, which is when I will be receiving a Positron Emission Test to check what the chemotherapy has done for me (or, conversely, not done). I will let everyone know the results soon after I do.

Thanks for your continued prayers and support.

John