A Personal Mordor

We’ve been watching the Lord of the Rings these past few days. As with many things on this journey to wellness, we take comfort in the familiar. These stories, always to me, are about succeeding against the odds and, more importantly, the fellowship of friends and family and the strength of the ties that bind us all together. The wise Meriadoc Brandybuck said to Frodo “You can trust us to stick to you through thick and thin – to the bitter end. And you can trust us to keep any secret of yours – closer than you keep it yourself. But you cannot trust us to let you face trouble alone, and go off without a word. We are your friends…” This week, we’ve been well supported by our friends and family and oh, how much have we needed that support! They are not letting us face trouble alone and for that we are most grateful. The gift of time given to us by so many people… whether to drive us, sit with us, message us, call us, check up on us, or running an errand for us… these gifts are beyond measure and we thank you all.

In the last few days, more tests have been done, each of them leading the doctors down the same path… towards the diagnosis of PCP Pneumonia. We are still waiting for the confirmation… cultures take a while to mature and reveal the specifics of the infection… but the doctors all seem fairly certain. As we wait, we take the time to digest the probable cause of this latest hospitalization. PCP. The one you don’t want to get.

Pneumocystis Pneumonia is caused by a fungus that everyone has within them. When you are immunosuppressed, this opportunistic fungus takes hold in the lungs and presents as pneumonia. The xrays show a fogginess in the entire lung. Or, like Rich, both. If not caught in time, it has a high mortality rate. We were lucky. Apparently face-planting can be a good thing!

The news that it might be this strain hits Rich hard. For the first time since our journey began, he’s expressed doubt that there will be a positive outcome. All the dire warnings we’ve had have come home to roost and he’s taken them to heart. We talk it through and turn this around. We won’t accept anything less than success. Haven’t since the beginning of this particular path a year ago. We reflect on healing thoughts, the blessings in our lives and the richness of our continued support of friends and family. We’re thankful for the successes we have and determine this is just one of those two steps backwards before the forward motion begins again. We have to fight against the side effects of the steroids… those damnable steroids that we so desperately need but that depress the adrenals and make it so hard to see the light.

Frodo: I wish the Ring had never come to me. I wish none of this had happened. Gandalf: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.

Rich has been on medications since September to forestall the development of this pneumonia but, as with everything, there is a failure rate. We just happen to fall into it. Our stem cell guru has said to us that this has been a very hard winter for many patients on this floor. More infections seem to be popping up. The flu strains mutated. It is indeed a tough winter.

As Frodo says, “We’re going on a bit too fast. You and I, Sam, are still stuck in the worst places of the story, and it is all too likely that some will say at this point: ‘Shut the book now, dad; we don’t want to read any more.’”

We too are a little tired of this part of the story but we’re not quite ready to shut the book!

We’re reminded time and again that this will be a slow recovery and we need to have patience. We are where we need to be and each day the doctors see improvement. The sounds of his breathing have quieted so we do see that change. But the breathlessness continues each day making any attempts at walking, even with oxygen, difficult at best. We resolve to make concerted efforts to take small walks, even around the room, to stay active. Our plan is to make small goals that are attainable for each day. And to dig deep and find more patience. Like Tolkein’s Ents, those treelike beings that are so long lived that they seem to stand still in their slowness, we must not be hasty!

Sam: “By rights we shouldn’t even be here. But we are. It’s like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn’t want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it’s only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn’t. They kept going. Because they were holding on to something. ” Frodo:” What are we holding on to Sam? ” Sam: “That there’s some good in this world, Mr. Frodo… and it’s worth fighting for. ”



Being in the ER as a stem cell transplant patient is a little different than for the general population. At least it is here at North Shore University Hospital. First, when you begin your treatments, way in the beginning, you’re instructed to carry a red card with you. When you come to the ER, you show the card at the triage desk. Immediately you’re given a mask, you’re kept apart in the waiting room from anyone else and, best of all, you get fast tracked to a private room in the emergency ward. There are so many more questions about dates, protocols, meds, timelines… you name it, it’s questioned. A few times. But that’s where the quick processing ends. Tests, always tests, are done. And always the same despite any different symptoms. Bloods, CT, X-ray, EKG… the list goes on and on. Then comes the waiting… for technicians to administer the tests, for the results, for consults. We’re thankful we do have the privacy we do and with the measles outbreak, it’s comforting to be out of the hallway of cooties.

Once again, we find ourselves in the ER. On SuperBowl Sunday, Rich was experiencing some shaking in his hand. We just thought that it was due to being at a get together after a lack of recent activity… tiredness. I remarked to Peggy that I thought there was a small improvement with Rich. Since he went off the Neulasta, his balance was much better and he was showing improved cognitive function and memory. He had more energy as well. His vision was clearer than it had been and he was doing small tasks around the house successfully. Although when I told Rich that I was telling Peggy that he seemed to have more clarity, he responded with “Claritin? 10mg… but I haven’t had any in a while.” OK, not so much.

Monday was uneventful.

And then came 2am.

The Magic Fingers bed, so long dormant, came back with a vengeance. Teeth chattering, body shaking, hyperventilating. No temp. Three hours later, we finally saw some relief in sight. Settling down for some sleep, we knew it would be a short night, but figured otherwise, back to our current normal.

Oh, how wrong! Rich’s balance was back to square one… face plant time. Thankfully, no obstacles to add to the Jackson Pollack artwork he’s currently sporting. As he sat to eat breakfast, the spoon/bowl combo was beyond his abilities. His hand could only go halfway to his mouth. Humor and amusement were plentiful as if it was some weird parlor trick. It continued with his total inability to get the spoon in the bowl… he was at least three inches outside of the rim of the bowl. His body just would not accept his commands… total mutiny. He kept saying, with a horrible imitation of an Indian accent “Backinbowl, backinbowl”… one of our favorite bits from Steve Martin’s movie “All of Me.” Of course, once we stopped laughing we looked at each other and said “ER.”

Lots of questions, lots of theories. The one that keeps on popping up is that the pneumonia from a few weeks ago has gone from viral to bacterial. The odd thing is, just a few hours before the bed, and Rich, started to shake, we were saying how his breathing is just oh so much better. Sneaky thing this pneumonia!

We have a flashback moment. When our daughter Emily was born, I was in labor at what is now Winthrop Hospital. My labors being long, I was dozing and turned the volume off on the TV in the room, the show was St Elsewhere. It was a very quiet night on the floor and the doctors would stop by the room, watch a few seconds of the show and then start calling out dialogue of what they thought the diagnosis and treatment was. “Rib spreader! STAT!” Here at NSUH, the staff lounge is right across from us. The TV is showing Scrubs. The sound is turned off. We imagine the staff creating their own dialogue. We smile at the memories.

Ultimately, we were back in the hall of cooties to wait for a bed… you don’t get to stay in the private ER room for long… there are others who need it as well. After the stem cell doctor stopped by, we were moved to a less busy part of the ER to try and keep Rich as isolated as possible. A mask is worn by our patient as a precaution. We’re told beds for those who are being admitted, for the most part, become available at two different times of night… 7:30pm and 10:30pm due to cleaning schedules. This holds true as close to 11pm we finally get back onto 7 Monti where we find, once again, familiar faces.

We’re not in the stem cell unit itself. We’re hoping this means a short stay. Get a diagnosis, some meds and get back home.

In the meantime, it’s good to be in the care of our angels in scrubs. I’m ready to hand off what our son calls the heavy lifting to someone else for a while. It’s been a long day. We fall asleep before the nurse is done talking.

Who’s On First?

As we welcomed Winter Storm Juno to Long Island this week, we reflected on a trip we took literally eleven years earlier to the day to Rochester, NY to see our older son, Rich, in the RIT Players’ production of “Rosencrantz and Guidenstern are Dead.” The Hudson River was frozen as we crosed the Tappan Zee Bridge. We stopped with our younger son, Nick, in Cooperstown. As we drove the backroads of NY State to get to the Baseball Hall of Fame, we were on what felt like a luge… walls over six feet high of snow on either side of us. Mailbox openings dug out of them. Breaks for driveways. No wonder the people who live along the lakes on the Canadian border laugh at our meager storms and the media hyperbole that come with them!

Once there, Nick was captivated by the video loop of the classic Abbot and Costello routine, “Who’s on First?”… Abbott: Strange as it may seem, they give ball players nowadays very peculiar names. Costello: Funny names? Abbott: Nicknames, nicknames. Now, on the St. Louis team we have Who’s on first, What’s on second, I Don’t Know is on third– Costello: That’s what I want to find out. I want you to tell me the names of the fellows on the St. Louis team. Abbott: I’m telling you. Who’s on first, What’s on second, I Don’t Know is on third– Costello: You know the fellows’ names? Abbott: Yes. Costello: Well, then who’s playing first? Abbott: Yes. Costello: I mean the fellow’s name on first base. Abbott: Who. Costello: The fellow playin’ first base. Abbott: Who. Costello: The guy on first base. Abbott: Who is on first. Costello: Well, what are you askin’ me for? Abbott: I’m not asking you–I’m telling you. Who is on first. Costello: I’m asking you–who’s on first? Abbott: That’s the man’s name. Costello: That’s who’s name?….

And so it goes. A comedy of misunderstanding and the absurd. Something we have come to know quite well.

Before Rich was admitted to NSUH at the beginning of the month, he had had some moments of confusion and memory loss that we’ve referred to as our Twilight Zone moments.

Sadly this did not go away with the pneumonia. The routine of the hospital gave Rich structure and put little demands on him and so he seemed to have gotten better. It was believed that the pending infection and low O2 levels had brought this on.

But going home? That was a whole ’nother episode of the Twilight Zone. Rich was discharged on Tuesday January 20th and the next day, I received an interesting text from him.

“ Ppybh guy lllkkk loollllllllĺkkk kkkk oppllllllll) llllllllllllllll) llĺoo9” On and on the texts would come throughout the day, each one more ridiculous than the last… “A very haiymllll.” Indeed!

56352_Screenshot_2015-01-22-08-28-42_displayOf course, I had the pleasure of determining what he meant and could interpret it any way I’d like thereby confirming the sweet and sensitive nature of my life partner. His words of love and support carried me through the day.

But the humor wore thin as more and more confusion set in. In addition, his balance seemed to become problematic. He still had the pain from the neuropathy but now, even tho’ he had no feelings of vertigo, he moved as if his inner ear were affected. By the first Friday we were home, his breathing was now once again crackly and wheezing. As a caregiver, it’s heartbreaking to see the distress all these symptoms give to our patient. We shared our concerns and how scary we both find this to be. We called the doctors and they advised the Prednisone be doubled as a short term blast. We would see our pulmonary guru on Monday.

But before then, we would experience the disturbing pattern of Rich falling. He could be walking across the room, no obstructions in his path, and suddenly he would faceplant. No warning. Just splat. And on the way down, he would hit something…. The bathroom doorframe, the night table, the radiator. He was becoming mottled like a Technicolor camouflage with bumps, bruises and scratches galore. For the entire weekend, I escorted him from point A to point B to keep him upright.

Clearly, the medications were a large part of the problem. Any of the “as needed” medications that did not involve pneumonia, we eliminated to see if it could help. We checked his oxygen levels but they fell within the low norm and were not the prime reason for this. We traced back the confusion to the time when he started on the Neurontin. Since his feet were still painful and he had been on this for three weeks, it wouldn’t be as if we were trading one problem for another… we now had two problems at the same time.

Our meeting Monday with the pulmonary doctor was very much a Dr House consult. Tons of questions on timelines of medication and symptoms to try and narrow down the culprits. We were approved to resume the vitamin B6 that had worked for neuropathy before was a welcome result. Neurontin was definitively off the medication list. Prednisone was reduced. We were to check in again at the end of the week to see how we progressed. We were fishing for answers on a large white dry erase board. Differential diagnosis still in flux.

Thankfully, the balance and coordination issues resolved quickly once the Neurontin was stopped. The storm had given me a couple of day’s leeway to be on hand before I had to go back to work. However, the confusion and memory issues continued. And on some days, seemed to be worse. He had trouble figuring out the remote control. Often he tried using his phone to manage the smartTV. Not that it would have worked for this particular TV but the other problem was that his phone was turned off.

Cooking has always been one of Rich’s passions. Whether baking breads, grilling and smoking outside or cooking for a gathering of friends and family, it’s where he’s in his best element. Since coming home from the stem cell transplant stay at the hospital, he was restricted not only with what he could eat, but what he could handle. Many foods were on the raw handling forbidden list, making the holidays this year more frustrating for him.

So I thought he would enjoy a simple task. Whenever anyone wasn’t feeling well, our family go-to is instant mashed potatoes…. one of the easiest comfort foods and one with no current restrictions. I asked Rich to make a batch for us. As I sat in the kitchen going through the mail, I watched him measure out the ingredients… something he could usually do from memory. I was glad he was checking the box’s instructions though… just to be on the safe side.

When he began to measure out the flakes, I was concerned over the quantity that he put in the bowl. As he mixed them in, he declared them too dry. I didn’t remember him adding water… how much did we need? He said he was making five servings. We went through the list of what he had added in so far. In order to get the recipe corrected, we ended up with eighteen servings! This masterpiece of mash took up a sizable chunk of counter space!!

When we sat down to eat, I questioned why he only had fish on his plate… where were his potatoes? “I couldn’t find them.”

I burst out laughing. “Come with me.” We went back into the kitchen. “See that honking MASSIVE bowl of spuds? THAT my friend, are all the potatoes you could ever wish for!” And with that, we both roared with laughter.

Abbot:Who’s on first. Costello:I don’t know. Abbot & Costello:Third base!

From our trip to Cooperstown, we went on to Rochester and the absurdist existential life of Rosencrantz and Guildenstern. We watched as our son, on stage, flipped his coin that only seemed to come up heads. R&G are minor characters in Shakespeare’s Hamlet. Tom Stoppard’s play puts them in the lead but restrains them to where they are in Hamlet. They cannot make decisions that will remove them from a scene nor take them out of their written character. Without stage directions from Shakespeare, Stoppard’s characters are stuck. They are left to question their existence and figure out their reality. Something we can totally relate to.

How apropos that the nonsense of Abbot and Costello and the absurdity of Rosencrantz and Guildenstern should be in our thoughts at this time.

Guildenstern: We’re still finding our feet. Player: I should concentrate on not losing your heads.

Now that we have our feet taken care of, we turn our determination to not losing our heads!

With the doctors’ blessings, we have eliminated all but the most crucial of medications in order to detox. We’re told that it will take some time for this neurological dilemma to resolve and we probably will have a neuro-oncology consult down the road. We’ve put into place a routine to ensure that medications and meals are all taken care of while I’m at work and so far it seems to be working.

How well we can relate to being stuck in a certain circumstance! As the snow covers our landscape, not quite as high as it did on that trip all those years ago, we take strength in the certainty that we’re going to find a solution to this, our latest bit of absurdist living.

Rosencrantz: He talks to himself, which might be madness. Guildenstern: If he didn’t talk sense, which he does. Rosencrantz: Which suggests the opposite. Player: Of what? Guildenstern: I think I have it. A man talking sense to himself is no madder than a man talking nonsense not to himself. Rosencrantz: Or just as mad Guildenstern: Or just as mad. Rosencrantz: And he does both. Guildenstern: So there you are. Rosencrantz: Stark raving sane.

And here we are… Stark raving sane!!!

Calling Dr. House

Random sayings of Dr. House, MD… “If it works, we’re right. If he dies, it was something else.” “It does tell us something. Though I have no idea what.” “The treatments don’t always work. Symptoms never lie.” “Tests take time. Treatment’s quicker.” “Idiopathic, from the Latin meaning we’re idiots cause we can’t figure out what’s causing it”

Now that we’re home after ten days at NSUH, our latest hospitalization seems so surreal. The previous reference to the TV show House was not too far-fetched. While there was a near certainty that we were dealing with pneumonia, the exact type was up for grabs. On House, if you’ve never watched, the diagnosis is not always clear. So Dr. House and his team meet at their white dry erase board and begin to eliminate what the symptoms are, what possible diagnosis meets those criteria and the race is on… Test upon test. Prescriptions and treatments are tried with a huge question mark as to whether this is the right direction. Modalities change as new symptoms crop up, reactions to the meds or treatments begin or new information from family/friends/patient is discovered. Rich and I laughed as we watched a marathon of the show during his chemo days and said to ourselves, gosh, it’s like being in Cabot Cove, Maine…. You don’t wanna be Angela Lansbury’s neighbor … you’ll get murdered. You certainly don’t want to be the guinea pig of differential diagnoses… so the question becomes, do you want House as your doctor or not?

Pneumonia is fairly common when you are a stem cell patient, albeit we’d rather have avoided it. The chest x-rays and CT scans all confirmed what the doctors heard in Rich’s lungs. Pneumonia. But, what kind? Bacterial? Viral? Fungal? Rich has been on meds since September to counter all those, including specifically the fungal pneumonia PCP. Blood cultures and nasal swabs are also done to help rule out various other infections. Then the meds started coming in…. what differential diagnosis are we looking at? What exactly is on that whiteboard?

First, we start with four different antibiotics simultaneously. Anyone who has been on even one course of one antibiotic knows that it can cause intestinal distress… like we need to revisit that? We have to beef up the immodium style meds to counter this.

Anti-viral meds to stave off any flu that might be developing are prescribed… Tamiflu until the swab cultures come back.

Then comes the debate of debates…. The reading of the CT scan. Bacterial is the first conclusion. Then, of course, comes the counter…. Viral. Fungal is totally ruled out.

One way to find out… House mode. Stop the anti-bacterials and start steroids… lots and lots of steroids. Inhalation therapy, pill form, IV, you name it, he’s gotten it.

The feeling is, as Dr. House knows, if this is a viral pneumonia, bombarding it with massive amounts of steroids will show a rather fast result. If it is not, then we’ll see a reverse. Russian roulette, medical style.

But, as we know, our patient is sensitive to steroids and we have to bump up the Ativan so that the weepy restlessness will subside. Steroids also bring on the hiccups once again. The staff is slightly amused at the predictability of our patient. We’re grateful that for the most part, these are not painful and are limited in duration.

Thankfully steroids win. In consult with the pulmonary doctor before discharge, we learn that Rich’s lung function was 30% at admittance, 50% on supplemental oxygen, dropping to 48% on antibiotics but rising up to 61% on steroids. House wins. Viral it is.

The recovery is slow… it is thought that Rich’s preexisting asthma and the BCNU chemo cocktail infused prior to the stem cell transplant are both slowing down his progress since they both can affect the lining of the lungs. So patience is key.

As all this goes on over the course of our time here, there are blood pressure changes… up, up, up, then down again. Discomfort one night sets off a flurry of cardiac testing including more blood cultures, all of which comes back negative. As we laughingly decide, our patient just needs a nice big burp.

1511667_10151728098277824_1346135358_nIn March of last year, before Rich began chemo but after his initial diagnosis, we took a much needed diversionary weekend trip to Philadelphia via our beloved Amtrak. There, in a shop by the Liberty Bell, we came across Ben Franklin’s book “Fart Proudly.” Perhaps the direction Rich needs to go?

A Matryoshka Doll or Boxes within Boxes

Back on 7Monti and here under different conditions, we notice more some variances in how nurses and orderlies care for their patients and what those differences can mean to a patient. Rich has been here for a week and a half. After leaving Mike and his party plans, Rich was with the general population on the lymphoma floor for a day or so. Then a room opened up for us in the stem cell unit and we found ourselves going once more through the double doors into a little room in the little hall… Amtrak cabin again occupied by us and our photos, games and tokens. Box within box within box. Like those Russian nesting dolls… matryoshka.

We’re welcomed by the staff we’ve come to know so well. They marvel at Rich’s hair since he didn’t even have eyelashes last they had seen him. We are thankful to be once more in their care and to have the luxury of a cleanroom and higher patient/nurse ratios.

Our first few days feel like we’re in an episode of House on TV as differential diagnoses are thrown about and test after test done to pin down the culprit of confusion and infection. Somewhere is a room with a whiteboard but one thing for sure, it’s not Lupus! Despite the pneumonia with its accompanying tests and concerns, we’re in a more relaxed state this time around since the rest and recoup is less nail bitingly new. And that gives us the leisure to observe the differences in how our caregivers interact and operate.

Carl Jung said “Learn your techniques well and be prepared to let them go when you touch the human soul.” How apt for our observations.

36826_20150116_230946_1__displayIt’s always joked about how it’s impossible to rest in a hospital. And in many cases, that is true. Vitals seem to be checked almost every time you breathe. During certain times of treatment, that is to be understood. Reactions to biohazards are nothing to mess with. Medications are to be administered on time… but are scattered haphazardly throughout the day as they are prescribed.

However, when the meds are stabilized there is no reason for vitals to be done as frequently and, from what we can tell, are not required to be. But there are those who work by the book… Every X amount of hours, vitals to be taken whether you are sleeping or not. That same thinking has one orderly turning on the room’s klieg light on at 2am although EVERYTHING IS LED AND CAN BE READ IN THE DARK. These certain folks cannot think outside the box regardless of the best needs of the patients… adding one more box to our matryoshka doll existence.

By no means is this a criticism but an observation on the variances in the interaction with our angels in scrubs. And a confirmation of what a difference it can make to the patients, their comfort and recovery, and to the overnight family caregivers who have work the next day, when meds and vitals are coordinated to maximize sleep time!

A few days ago we experienced the uber-ironic moment when the nurse woke Rich up at midnight to take a sleeping pill. This morning, another nurse set up and began Rich’s nebulizer breathing treatment while he had a mouthful of breakfast. Contrast that with the forward thinking nurses who tell us to ring the nurse call when/if Rich wakes in the middle of the night. Then and only then will they come to check vitals and administer the sleeping pill. These nurses and others like them will confer with us when they come on shift and discuss our plan of action for meds, walks, showers, sleep, etc. ensuring that we are all on board with the same schedule. We’re grateful these forward thinking caregivers are in the majority in our experience.

At one point, we asked our stem cell guru about Rich’s meds and whether it was crucial to administer them in a staggered manner. Ativan, which counters so many of the effects of the steroids as well as helping with neuropathy, was withheld by a certain in-box thinking nurse and we wanted to find out the why of it. Our guru assured us that it could be taken with all the meds at the same time with no issue. This allowed us to insist when in-box nurse kept pushing off Ativan, citing contraindications. We did accept her first delay but two hours later when we asked again and again she advised a two hour delay, we insisted. We cited the doctor’s approval. We pushed. And had a good solid night’s sleep without interruption. Sometimes, you just gotta do what you gotta do.

These observations are by no means meant to denigrate the people who care for us with grace and humor day by day. We have nothing but respect and gratitude to each and every member of the Hematopoietic Stem Cell Transplant Unit. Their caring, both in and out of the box, has been more than we can ever have expected. But it has been interesting to have the luxury to observe what it is that made a day or night more comfortable overall and how the people who come in contact with you can make the difference when they work in partnership with you. And, perhaps, how it is important to advocate for yourself when it is necessary.

That being said, we wait now for the doctor’s rounds and the confirmation that we are going home today. Being forward thinking ourselves, we’ve packed away our photos, games and tokens and our coats are draped over the chair, signaling our intentions… fingers crossed… we’re ready to leave THIS box within a box within a box!

Ten Minutes to Wapner

After the holidays, we found ourselves in an odd mix of realities that reminded us of the Twilight Zone. That mid-century TV show that always had a twist that turned what you knew to be true totally upside down. Fitting for this time of year since the marathons usually played January 1st. We remember the kids lined up in front of the set excited as each favorite episode came on… and they all seemed favorites.

One week into the new year, Rich dropped me off at the train station the way he had been doing for quite some time. He’s been dealing with severe peripheral neuropathy and, in an effort to control the pain, we’ve been in touch with our gurus to determine the most comprehensive plan of action including physical therapy, acupuncture and Neurontin to get those nerve pathways back on track.

Throughout the day, we were in touch with each other as we spoke to the powers that be… texting, phoning, emailing. As usual, when I neared Jamaica station on the way back home, I texted Rich the time to pick me up at the station by the taxi stand. He replied “Nick, take a cab.” I texted back that it was me and did he still want me to take a cab? Nope… all good. Except when I got to the station, no Rich. “Hey, where are you?” “In the bedroom” “Are you going to pick me up or should I take a cab?” “When are you getting in?” “Now, I’m at Mineola now” “I’ll be right there” As I got into the car, I jokingly said “Didn’t you wonder when I was getting home from work? It’s almost 7pm!” There was a long silent beat as he stared at me. “You went to work today?”

As Rod Serling would intone: You’re traveling through another dimension, a dimension not only of sight and sound but of mind. A journey into a wondrous land whose boundaries are that of imagination. That’s the signpost up ahead – your next stop, the Twilight Zone!

Yep, that’s where we are now!

The following morning it was determined we needed to get Rich to the ER to undergo testing to find the cause of this confusion. A likely culprit could be the slight fall he took a month ago when his feet were numb. Another could be the infection he’s currently battling that is suspected to be pneumonia. Better to be in the hospital not only to figure out this conundrum but to also have a constant eye on him as he recovers. These infections have a high mortality rate for stem cell patients…. we don’t wanna mess around. We then found ourselves, once settled into a room, with another cultural reference… this time Rain Man. A constant litany of words flew over us from the moment we entered the room.

are you ok richie, it’s nightime, is that your name, richie, i’m mike, i’m going home tomorrow, my dad is picking me up. i’m watching tv, it’s good to watch tv. what’s that sound? is that you richie? are you ok? i’m going home tomorrow. I’m being good right? i’m watching tv, that’s good right? hey mrs are you there? is richie alright? I’m going home tomorrow, my dad is picking me up. can i have apple juice? i’m coughing, help me, i’m coughing. oh i’m ok. do you have apple juice? i like apple juice. i’m being good right? quiet game, i’ll play the quiet game i’m good i’ll be good are you ok richie? your tv has snow on it, my tv doesn’t have snow on it how come i don’t have snow on my tv i like snow i have football. i’ll be quiet quiet game now i’m being good right?

For fifteen hours, our pal mike didn’t stop talking. Stream of consciousness peppered with validations. He was very happy and very hopeful. It was finally decided to send Rich up to the stem cell floor for the rest of his stay at NSUH. As we left, mike was still hopeful: there’s a party today i like parties there’s cake and soda and dancing i like dancing david are you going to the party are you going to take me to the party can you help me stand up so i can go to the party. is the party in the Bronx, i live in the Bronx the party is upstairs i can’t wait i love parties…

This is a man without guile, without agenda, living in the moment and the best possible futures full of cake and dancing. But boy is he exhausting for those who need to rest. Once again, the patience of the staff with this man who makes their routine anything but routine is to be commended. We know we’re in the right place

So here we are, back on Monti 7, just a few doors down from the double doors that take us to the hallway within a hallway, the land of little rooms. We’re on the same floor where RICE infusions came to be for us. There are names and faces that we know as well as a routine that is calming in its familiarity. We are relieved to be in a facility where we do not have to question whether we are taking the right path to wellness on our own.

The next few days will be full of meds, monitoring and getting lungs working well. The CT scan shows no sign of injury. The low oxygen levels and the body’s bombardment by an infection are thought to be the causes of the confusion. Physical therapy will begin in- hospital and continue afterwards…. Building up our One in Nine so that, like Mike, he can dance the night away and the Twilight Zone will once more be nothing more than a tv show.

These experiences in altered realities have been valuable lessons in the fragility of our consciousness. Oliver Sacks wrote: “Waking consciousness is dreaming – but dreaming constrained by external reality”

The question is; whose reality?

Party on!

Let’s Talk Turkey…

And someone thought this was a good idea.

Anyone over a certain age has had a colonoscopy and undergone the prep that one does the night before to cleanse all the necessary passages. The irony of this is that, despite Rich running at least once an hour to literally drain his body of anything his stomach didn’t keep, he’s gotta start taking laxatives. I believe under the Geneva Convention this falls under the “cruel and unusual punishment” category.

The doctors are hoping to find the cause of this chronic D. The theory that’s being tossed around is that this is an example of Engraftment Syndrome… a lesser cousin of Graft vs Host Disease. GVHD is common in transplants when the organ or stem cells are donated from a family member, friend or stranger… pretty much anyone who is not your identical twin. The cross matching and typing is very in depth but there are always differences that, no matter how slight, can trigger an autoimmune response and the body begins to reject the transplant. As bad as that sounds, the doctor’s delight in the possibility had her practically dancing in the office. The long term prognosis for patients with this following an autologous stem cell transplant that exhibits GVHD or ES are improved over those who don’t. It shows the body is prepared to fight any invaders.

It’s these kinds of things that make you wonder what you should be wishing for. Other than normalcy.

We were instructed by the stem cell doctor to call from the recovery room after the endoscopy and colonoscopy were done so we could all consult on the immediate results.

Great plan… only no immediate results to be found. Everything looks good. Which, for most people is good news. For us, it means waiting for sample cultures and biopsy pathology reports to come back. A week of waiting. We’ve been down this road before.

Our later conversation with our stem cell guru is that we up the amount of opium and add immodium into the mix to stem the tide. Suddenly the amount of laundry is lessened considerably. Of course, so is the amount of coherent conversation!

We give the new cocktail a few days to do its thing. Then we begin to play with foods to see what may exacerbate the situation. Before, EVERYTHING was the culprit. Now we’re finding a certain level of lactose intolerance. Tomatoes have been an issue all along but we’re ready to test out some sauces and fresh veggies to see where the limitations are now.

Our other restrictions are being lifted one by one. Plants are once again part of our interior landscape and it’s good to see growing things around us, particularly as Autumn wanes and Winter approaches. Crowds are less of a fear as blood levels rise. As we are now less than two weeks from the magic number of 100 days post-transplant, another milestone is reached for us. No longer are we in twin beds in the little main floor bedroom – we’re once again in our own bedroom in our own bed upstairs. We luxuriate in the space and rejoice to be able to share a bed once again!

And now, Thanksgiving is just two days away. We have so much to be thankful for this year. The friends and family that have supported us throughout our journey; the doctors and nurses who have given us the best of care, listened to our concerns and held our hands; the research that created this science fiction treatment that has set us on this new path to health. And all those wonderful family celebrations we have had!

We’re thrilled to leave tomorrow night to be with our family in Rochester for the holiday weekend. Our trip will be by Amtrak. We’ve booked a sleeper car to minimize the exposure to potential infections. Will it remind us of our little cabin at North Shore University Hospital…on the seventh floor through the double doors to stem cell transplant unit? The memories of our Amtrak travels served us well during our time in that little room. When we enter THIS little room on our Amtrak train, we’ll be able to see how far we have come. That the end of this line is filled with the arms of our family makes it all worthwhile…for the first time in a long time, Rich will be able to hug and hold his grandchildren. Priceless.

Blessings and the love of friends and family to all of you who have been with us as we’ve traveled this path. We wish you all a joyous holiday. You will be in our thoughts and in our hearts as we celebrate with gratitude this weekend.

Into the Opium Den

When you’re told you can, with limitations, enjoy restaurant foods again, it’s both a welcome milestone and a finger-biting moment. Rich and I decided that given the timing, we’d go out to dinner for our wedding anniversary… a wonderful way to celebrate on a number of levels. But whose kitchen do we trust? What clientele could we take a chance with? This was nerve wracking! The stem cell guru suggested we avoid taking the subway with any ebola patients…. Good thinking. Duly noted. No worries. Right.

The choice made, I was nervous as we got ready…. Going to a public place without a mask and gloves? Eating food prepped in a kitchen not cleaned by me? Using utensils that may have been handled by any number of people? OMG! What are we thinking of?!

As we walked into the restaurant, I wanted to tell Rich not to touch anything. I wanted people to move away from us. I wanted to read out the menu to him so he wouldn’t come in contact with it. I surreptitiously rubbed my silverware to make sure they were clean enough. Is anything clean enough? Have I become OCD about Rich and his environment? Who thought this was a good idea?! Haven’t we seen the show on 20/20 on how dirty restaurant menus are?!?Where are my Lysol wipes??

The entire night felt like one of our kids’ video games with dangers everywhere, just waiting for us to be caught off guard. I’m sure in time, we’ll find that we become more accustomed to being out in public, surrounded by germs, and more able to resist the urge to shove people out of our way… But I could be wrong. Maybe I need to get Rich a portable bubble.

Despite my sudden germophobic tendencies, we ultimately relaxed and enjoyed our meals. There would be no sharing of plates in our cootie-free world, but the restaurant kindly divided things we wanted to share… not the same as the usual picking back and forth, but it would do.

At the end of the evening, Rich was happy but tired. We would rest well.

Or so we thought. Despite the mega doses of lomotil AND immodium, we were up all night as Rich prayed to the porcelain gods for deliverance from this draining hell. Despite ‘round the clock medication, the intestinal disorder , the Big D, continues. The medication is increased yet one more time…. Five lomotil and eight immodium throughout the day, round the clock. Alarm clocks wake us throughout the night so meds can be taken on time. We are both literally dragging our asses throughout the day. We keep in touch with the stem cell team daily.

Finally, we’re referred to a gastroenterologist who stops the pill-a-thon Rich is on and prescribes tincture of opium. Or as he calls it, “The Plug”. And it works. Of course, being opium, the stuff that finally allows you to leave the house and enjoy yourself also puts you to sleep. We add another irony to our list. Sleep is healing and much needed after so many interrupted nights so it is not totally unwelcome. We try to extend the amount of time between doses and there is an almost immediate reaction. And as with all medications, as time goes on, there is less effectiveness. How many more drugs are out there for us to try and which one will be the one that gives a permanent relief? We know we’ll find a balance soon.

An endoscopy and colonoscopy is scheduled for this week to ensure that there are no underlying causes beyond the stem cell recovery for this latest adventure. In the meantime tests and cultures are being done to check for those microscopic clues as well. Also on the agenda is a meeting with the stem cell team. We’re keeping fingers crossed for some of the other restrictions to be lifted, answers to be found, balance to be maintained. At 81 days post-transplant, so much closer to the 100 day milestone, change is coming!

A Sob Story

Ten years ago, on our first journey through cancer, I had called Rich from work to check that he’d taken meds and make sure he was comfortable. His voice sounded off…

“What’s wrong” “Nothing”

“Your voice sounds odd, what’s going on” “Nothing, I’m fine” “But….” “I’m just watching TV” By this time, his voice was all choked up. “What are you watching?” “Just a home makeover show” “And…” (sob) “They really liked it.”

Now, I get teary over heart tugging commercials, sappy as they may be. Chickflix and a good cry are high on my list of a good time. Nothing is as cleansing as bawling your eyes out over some ridiculous romcom. Not for everyone tho’… not for my partner. The conversation above was our first indication that there was a chemical reaction going on. As we’ve discussed before, prednisone is usually the culprit. It’s known to either depress the adrenals as Rich has experienced, or will stimulate them and give the gift of energy coupled with a soupcon of restlessness. Sometimes a maddening combo… a little bit of both.

The medications in our current arsenal also include some culprits. But it’s not always about the medication. Our Stem Cell guru likened it to a post-partum depression…. Not too far- fetched since Rich has effectively given birth to himself. Whether these short term depressions come on because of medications, hormones, medications or sudden health incidents like a stroke or heart attack, the accompanying weepiness can be disconcerting at the least and devastating at the most. Patients report that there is no despair or feeling depressed when this weepiness comes on. These same people say that they are so thankful to be given another chance at life. So why? Where does the need to weep come from following a health change?

It’s said that there are three types of tears… basal tears are those that keep our eyes healthy by blocking out bacteria that could be harmful, reflexive tears are those that protect our eyes from irritants like dust or the fumes from cutting onions, and emotional tears … these are the ones we’re dealing with today. Emotional tears are known to have higher levels of adrenocorticotrophic (ACTH)than basal tears. This is a chemical that is also associated with stress hormones… it actually triggers cortisol in the adrenals. So by ridding your body of ACTH, you are lowering the stress hormones which are known to affect blood pressure, immune system, nervous system and food metabolism.

It would seem that the body knows what it is doing initiating these weeping episodes. What a marvelous machine the body is that senses an overload of stress hormones before we even know it’s there!

Like all side effects, in small bits they are manageable. But when it interferes with getting on with life, then it’s time to take back control. Thankfully, again there is an array of solutions to choose from.

Our Stem Cell Guru prescribes a counterattack and in time we’ll find that our family dynamic will be back to normal. That normal would be me sobbing on the couch while Rich says “hmmm, sad” as we watch an entire ship of passengers sinking once more to the bottom of the North Atlantic.


A Crock of Shit

Chuck Palahniuk wrote “Crap has always happened, crap is happening, and crap will continue to happen.”

In the middle of the night, there is a quick rush to get untangled from sheets and get to where you need to be. Sometimes you get there in time. Sometimes you don’t.

At first, the inconvenience of it is an annoyance. As time goes on and the crap just continues relentlessly, you get tired of the need to be near your porcelain pal. When the intestines are not on overdrive, your stomach decides to act up. If it’s not one, it’s the other. Worst are the moments when they both stage a revolt. The doctor assures you this is par for the course.

Your taste buds begin to come back. Flavors are starting to become familiar once more. But in a cosmic joke, your appetite is non-existent. Despite the reawakening of those taste buds, you have no real desire for food and your current situation makes your diet a mild one of innocuous foods. Dietary changes have not made any difference.

Cultures are taken and the dreaded c.diff bacterium, the Golgothan shit demon, is not detected. You’re cleared to start probiotics and given an uber-immodium to take. But this is not a prophylactic medication, you can only take it when the crap begins to hit the fan. So it slows it down, shortens the amount of days it lasts, but it doesn’t keep it from starting up. It’s not an immediate fix. And it does nothing for your stomach.

After three weeks of this, you find that your energy is gone. Those walks around the house are few and far between. Those five steps up and down are on hold for now. The progress you made in stamina and endurance has regressed. You are less steady than you have been in a while. Days are filled with naps.

You monitor your sessions by keeping a calendar diary of your digestive system. You call the stem cell team every few days to check in with the current status. At this point, it’s a fact finding period of time. Maybe the data will reveal a better path to take.

Prior to the in-patient seven day chemo marathon, you were given medications to protect your mouth, stomach and intestines from the beneficial poisons. These are the meds that

thickened the membranes to keep any ulcerations at bay. They did their job. They did it well. They are also the meds that began this upset, playing with your carefully balanced internal bacteria. We begin to hypothesize. Maybe the return of taste buds indicates a return to norm. The thickening of the membranes began in your mouth and worked their way through your system. Could the needed balance begin the same? Could it work its way through your system and put an end to this? Is it starting now? How much longer will this be our norm?

At fifty days post-transplant, this is not where we thought we would be. It’s hard to keep spirits up with this unrelenting discomfort. Our task is now to find either a resolution to the physical ills or the spiritual ones. If there is a pattern to these sessions, we need to find it and make the most of them. If there is not, then we need to find our way to living fully with the uncertainty of each day. The humanist and philosopher Erasmus, who was also known by the very flowery Desiderius Erasmus Roterodamus… a name that brings a smile… wrote “There are some people who live in a dream world, and there are some who face reality; and then there are those who turn one into the other.”

So now the plan is to be amongst those who turn the dream world into a new reality. ‘Cuz this reality is full of crap!