The Best Medicine Ever

As our kids were growing up, on the weekends we’d all climb into our big bed and lay in a mish mosh, watching movies on TV when the nights were as long as the days. As Rich and I sat, sometimes watching our kids instead of whatever was on the television, we would know… in this bed were the people we cared most about in the whole world. There was a feeling of peace that would flow over us. A contentment for the richness of our lives. Often as we traveled the country, it was the same even as our family grew… here we are together, experiencing this moment, threads binding us tighter together even as our love expanded to include our new members, new memories.

Despite the medical events of this past year… and it is a year since we first started this latest journey… we’ve been blessed. We have not only crossed the wide and rocky sea of this cancer treatment, but more importantly, we’ve been honored to be on hand to welcome the newest baby of our daughter and son-in-law, the graduation of our youngest son, and the wedding of our older son to his bride. What an amazing year it has been! Our family has grown in so many ways and it has been an incredible year of celebrations. Some celebrations we have had to view from afar, but always our hearts have been with our family.

There is a Chinese proverb, “God gave burdens; he also gave shoulders.” These past few weeks as it has been for this year, our shoulders have been lightened by our family. Richard and Emily have come down from Rochester at various times to be with Rich at home while I go back to my office. They bring some more life into the day to day routine. Our grandkids run about. Meals are cooked, shopping is done; lifting the daily burdens from Nick, Rich and I. It’s a respite that is sorely needed. Our gratitude is not only to them, but their spouses who have given us this precious gift of time. With all of our children, we’ve been blessed.


In the time since Rich’s last discharge from the hospital, we’ve seen such wonderful progress in his recuperation. His breathing sounds clear and that his lungs are clear has been confirmed by the pulmonary doctor’s slew of tests. Slowly but surely, medications are being adjusted to smaller doses. We look forward in a number of weeks to saying goodbye to prednisone!

We have a physical therapist coming to the house twice a week. Gone is the use of the walker. Now a cane lends support but the PT sees improvement in the strength in Rich’s hips and legs as he completes his daily exercises as prescribed. The damage to his lungs, as well as his muscles, is slowly healing. With someone spotting him, he can now go up a full flight of stairs. Once more, we sleep in our own room on the second floor… we rejoice!

Though the house is now quiet,how wonderful to sleep in that bed that once held our whole family on those cold winter nights! How wonderful to have had these moments these last few weeks where kids and grandkids were all together with us, snug despite the arctic cold outside, watching movies and sharing laughter and, yes, some burdens as well.

Surely, that has been the best medicine, ever.


Two Steps Forward, One Step Back

A few years ago, Rich and I joined a bunch of like-minded people and learned some basic ballroom dancing steps on Tuesday nights at a restaurant we usually associated with our yearly breakfast with Santa. An unrelated event broke my ankle and the lessons ended. But the back and forth of the steps, forward and back, have come to mind as we transitioned once more from hospital patient to recuperating at home. Step forward, step back.

Rich was released from the hospital on February 13th, ten days after he was admitted. We left with a whole new protocol of medications to help him heal from the damage to his lungs and continue to fight the PCP Pneumonia.

As happened last time, Rich’s breathing is not improving. This time we don’t delay but meet with the pulmonary doctor who puts him through a battery of tests. The results show no reason for the continued breathlessness…. His lungs are clear, he is able to walk without decreasing his oxygen levels. Thankfully, our doctor does not stop there and analyzes our medication list, running the calculations for body mass, which shows the medication to fight PCP is not the same dosage as he was receiving in the hospital. We’re told that there must be a reason why the dose of the tongue-twister drug of choice, trimethoprim- sulfamethoxazole, is now half of what it had been before, now only twice a day. Our stem cell guru is consulted confirms that there was some kidney function elevation while on the drug. We’re given the compromise of adding another dose daily. Thankfully, this does the trick.

As always, prednisone, the second in our PCP fighting arsenal, is a necessary yet distressing Rx for Rich. At the 40mg dosage he’s on, our considerable array of medications can’t help him sleep. A particular night Rich wakes up and is in distress. On steroids, it’s very easy for adrenals to run hot and cold and panic sets in quickly. Throughout the night, we analyze what is happening as we struggle to find solutions to the restlessness, the body aches, the host of symptoms that kept cropping up, one followed by another. Always there is the thought: is this a response to something else? Should we call the doctor?

As the sun begins to rise, we decide to attack this from another direction. No pain killers, no narcotics. They’re ineffectual. Instead, we’ll embrace the night and relax into it. If Rich is going to be awake all night, then rather than fight it, we’ll join it. Rich fills his phone with books on tape. On the night table a snack and his water bottle filled to satisfy those steroid munchies. Headphones are at the ready.

He falls briefly asleep and then the insomnia kicks in. He puts on the headphones and noshes as he listens to the stories unfold. There is no sleep, but there is no panic. The night passes. We’re in the clear.

Until the neuropathy hits hard the next night.

We opt for Tylenol and Advil instead of the big Rx guns. One night this works, the next it doesn’t. A very long week followed as we tweaked our routine.

Approval has been given, we can go for acupuncture. Our ace in the hole of pain relief is once more in our hand. It takes a few sessions and thankfully, there is relief not only during the days but the intense nights.

Rich’s body learns to work through the prednisone and sleep begins to take back the night.

Two steps forward, one step back. As long as we keep making progress, we’ll accept the dance!

It’s Always Something

Gilda Radner wrote a wonderful and wacky memoir of her time with ovarian cancer. When we consider that just getting diagnosed for her was a journey in and of itself, we see how lucky we’ve been in getting answers in a rather timely basis although it hasn’t always felt that way.

At one point in her treatment, she had an intestinal blockage and the course of action, her gynecologist determined, was to insert a bag of mercury down her throat via her nose. This heavy metal would push past the blockage opening her intestine at which time, the bag, which was basically a condom, would be pulled back out up and through her nose.

When the time came to pull the bag back out, the end of the string was empty. Now she had to wait for the bag to be expelled from the other end. And, for anyone who has dropped an old fashioned thermometer knows, mercury is not easy to pick up. As children, I remember we would take copper pennies and put them in the mercury and pretend we turned them into dimes. The problem Gilda had was that the mercury was in the toilet. And being a heavy metal, would not flush. The slightest fart and little balls of mercury would pop out. There is no way to do this story justice without direct quotes but, if you are familiar with this talented woman’s work, you can imagine how crazy it all became. As she said, “it was quintessential Roseanne Roseannadanna.”

At the end of the hilarious account of all this, was her admonition learned from a wise nurse… “Don’t let a gynecologist put anything in your nose”

Wise words, we’re finding out.

As everyone is well aware, the meds always seem to have an effect and generally not what you’re expecting. We’ve certainly had quite an experience with poop in all its forms. This time, Rich worked his way into a full blown blockage, beyond constipated, his bowels were now impacted. Again, not a new experience, but this time, we’re in the hospital. It’s not up to us to dispense medications. Our notes show that even from ten years ago, the protocol was to megadose on Senekot and Colace. Similar to a pre-colonoscopy cleanse, this would do the trick.

With our “too many cooks spoil the broth” array of doctors, no two were of like mindedness. The overriding opinion came from hematology…. Over the counter doses of meds. Let’s take this slow and easy.

To paraphrase Gilda and her mercury bag, don’t let a hematologist determine the course of action for your bowels.

It’s not gonna end well.

Days went by. Pressure built. Rich looked ready to give birth. And the analogy was not too far fetched. The labor pains were awful! When the pulmonary doctor took pity and advised hourly doses of miralax, there was relief. Partial, but relief. And the next day, when vitals were taken, Rich had lost fourteen pounds in twenty four hours. Unfortunately, it was a little too early to celebrate. Although his comfort was much improved, there still existed a small blockage that would enable, throughout the day, the buildup once more of gas and pressure. No room for food in his stomach and the pain of the bloating is back.

At one of the rounds in the recent past, we were offered some advice by the hematology doctor. To take a look around and see the situations that others on this floor are in. To understand that we had dodged a fatal pneumonia. Impacted bowels were nothing to worry about.

In many ways, good advice. But when your pain is on a ten on the universal pain scale and you are writhing on the bed, at this point for days, it’s hard to have empathy for what basically boils down to the starving-children-in-China-syndrome. Those kids aren’t benefitting by me cleaning my plate and those patients on 7Monti aren’t going to all rise up and walk because Rich eschews a better treatment. Perspective is one thing, nonsense is another.

Morning rounds Rich took a stand. No longer was he a complacent patient. He stood his ground that not enough has been done over the last five days. A plan is devised with coordination of the various departments overseeing Rich’s hospitalization. An enema which will be followed, if needed, by a manual manipulation of the blockage… an attempt to break up the fossilized poop that just refuses to make a move. Unfortunately, plan B had to go into effect. Softening that blow, there is a karmic moment of giddiness, the hematology doctor was the one who, because of a lack of urgency in setting up the right treatment, has to be the mechanic going in under the hood. Sadly, it is once more unsuccessful.

The GI team is brought in and they recommend a CT scan to get a better look at the blockage. Apparently everything below the blockage got cleaned out with the pulmonary doctor’s cleanse protocol. Now it’s time to work on the cause of all of this and clear it once and for all.

Dr. GI decides to start a medication that we tried before. But, like Dr. Pulmonary, he goes for hourly doses and not Dr. Hematology’s wimpy OTC dosage suggestions. We start that while waiting for the CT scan is being set up. If these don’t work, the next step is a colonoscopy that will include an effort to remove the blockage.

Luckily, the new protocol begins to have an effect and, in twenty minute intervals for hours on end, Rich is using his new walking skills to and from the bathroom. Physical therapy by poo.

Throughout this hospitalization where we are on the general floor, we’ve seen how the stem cell unit is really an ideal situation for patients with a two for one patient to nurse ratio of care. There is a sense of urgency when consults or tests are needed. Most importantly of all, whatever your concerns are, they are taken seriously. Your belly pain is not any less of a concern than the PCP that brought you there in the first place. The rest of the hospital would do well to follow suit.

That’s not to say that the staff on the general floor is less caring, less involved in the care of their patients, but more that they are stretched thin… too thin… and have less immediate resources than their counterparts behind the double doors in the little hall of little rooms. It makes us appreciate where we have been. And all the more anxious to get back home.

There is still a long road to heal from this latest bout of pneumonia. We’re reminded time and again that we can expect another few weeks at home of medications and care to recover from this most insidious of illnesses. And we’re also reminded how lucky we’ve been, once again, to have gotten where we needed to be before we knew we even needed to. That some symptoms that seemed totally unrelated brought us immediate care which removed the word “fatal” from our diagnosis.

But it is true… as Roseanne Rosannadanna said, “It’s always something”

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?