Unlocked

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” ― Douglas Adams

Boating and Rich’s cancer journeys seem to be always tied together in my mind. In 2003 we were prepping for a trip along New York’s St. Lawrence Seaway… home of the Thousand Islands… An island being defined as any land permanently above water and supports at least one tree. We were renting a houseboat for the week … determined to see as many of those islands as we could. I buzzed Rich’s hair short to make life easier and in doing so found a couple of small cyst-like bumps. We agreed to get those checked out when we got back.

I’ll always be thankful that these bumps, which turned out to be lymphoma tumors, manifested themselves where we could find them. But as our family motored our way around the Seaway, we were blissfully unaware what was to come. Our biggest worry was getting this crazy steel tub from port to port and to make our way through the canal locks without totally demolishing either it or any other craft. Sometimes we actually succeeded!

And what a week it was. Jumping off the upper deck into the clear water as huge steamer cargo ships, that all seemed to be named “Svorden Norden”, chugged by. Swimming, fishing, grilling, wending our way in and around so many of those islands, stargazing those clear nights…running around the deck as we docked or went through those locks.

The locks. Patiently we would wait as the water slowly filled, bringing us one step closer to where we needed to be on the canal. The wooden gates at least ten feet high held the water back, little waterfalls above us where the wood had separated over the years…these locks were built in 1830! Men on a catwalk above would turn the iron wheels which released the water into our bay. Once our lock was filled to the top, our level in balance with the next, the gates would open and we would move forward, another wooden gate ahead of us. Waiting once more. Over and over to take us from the lows to the highs until the last gate opened and the river spread before us. Our new journey revealed.

Lessons in patience as we were lifted to our destination.

Is it that the breezes are beginning to pick up from the south, bringing with them a tang of salt? Is it the promise of summer days on this island we call home? For some reason, boating has been on my mind. Well, okay, I do know why… Rich’s feet have been looking like pontoons these last few weeks… he’s walking on veritable flotation devices!

From atrophied to pontoons overnight

As it seems to be after each hospitalization, when he gets home, his breathing worsens. Once again, we’re back at the pulmonary doctor who, once again, gets his meds more in line with what they were at the hospital. While this does improve the wheezing, whistling, crackling symphony of each breath, this time we got some unwanted side effects in spades… the fluid in his lungs just seems to fall right to his feet. And as time goes on, fill up his legs as well. Someone has turned the iron wheel.

We marvel at just how much skin can stretch. But when the skin begins to dimple as if he suddenly has cellulite and his feet hurt just from the pressure alone, we call the doctor. Lasix, a water pill that has been in our medication arsenal before, is begun again. After a few days, there is no reaction. Another call to the doctor and an every-other-day additional dosage is added. In the meantime, we make a concerted effort to keep this pontoon boat upright… he, like our houseboat, has a wayward list. As he moves around the house, once more he’s holding on to keep from falling. Sometimes he succeeds.

More consults. His lungs clear, we can begin to wean off the suspected culprit, our nemesis prednisone. Ten milligrams at a time, every five days, we drop the dosage. We accept the emotional ramifications, the shakiness, the off feeling of the withdrawal because, frankly, we just want this medication gone. And no matter what the increments, there is always a withdrawal effect.

Finally, it’s slow and not quite steady, but the pontoons begin to deflate.

We welcome back each evidence of bones even to the tiniest of pinkie toe knuckles. While Rich’s legs once more have the shrunken look of atrophied muscles, we’re glad to see his shinbone is back from its long stay under water.

We do, however, mourn a missed opportunity. Gone with his flotation devices is the possibility of testing his ability to walk on water.

Believe!

Believe!

March 18, 2015, 10:35 PM

“There are a million things one might do with a block of wood. But what do you think might happen if someone, just once, believed in it?” – Mr Magorium

In 1995 we took our beloved Amtrak to Arizona. After visiting with family, we went, as is our wont, to the Grand Canyon. Rich’s asthma had been acting up so we made sure to take his inhaler with us. We’d be at about 7,000 feet above sea level and there was sure to be some effects. When we got to the hotel in the park and opened our suitcases, there was a distinct albuterol smell… the inhaler had discharged in the bag leaving the cartridge empty.

The next morning, Rich began to have an asthma attack. We quickly went to the clinic on the park’s South Rim. Because of time differences, insurance approvals and needing to get a prescription from our primary care physician, it took some time to get the needed refill. And as we waited, Rich’s asthma got progressively worse. It seemed that almost as soon as he was handed the inhaler, his wheezing began to abate.

Six years later, we once again were at the Grand Canyon, this time on the North Rim. We decided to bring a prescription with us and fill it at the park instead of having it discharge en route. Now at 9,000 feet above sea level, we were all feeling the effects of the thinner air. As we checked into our cabin, we asked at the desk where the clinic was to get the prescription filled. The North Rim has no clinic; the closest pharmacy was over an hour and a half away. What, we wondered, happened in case of injury or illness? Ah… For that you would be airlifted out.

Not an option.

Thinking back, we remembered that there was a camp store on the South Rim, they had Primatene; an over the counter inhaler. We quickly got directions to the camp store on our side and made our way through the alpine forest. Like everything else on the northern part of this national park, services are minimal… much more so than on its southern counterpart. They had no Primatene.

I looked at Rich, pointed my finger at him and said in my mom voice, “NO! YOU WILL NOT!”

And he didn’t.

The mind/body relationship is a strong one. This time around, as the RSV kicked in just a little bit of viral pneumonia, Rich’s asthma would not resolve. As his prednisone increased to extreme levels, the side effects of the-medicine-we-dread-most was keeping his chest tight and breathing difficult. After an increase in the nebulizer treatments helped him get off the supplementary oxygen, the wheezing and tightness just would not go away. He was a proverbial block of wood.

In our room is a picture of our family at the Grand Canyon in 2013. The solution was there… waiting for us. We had to believe.

554501_10151394189007824_608766455_nWe hit that prednisone wall with a two pronged attack. Talking it all through, we thought about our ridiculous antics at the canyon. Learning from it all, we determined that the mind was going to be the key to getting this resolved. But it needed some help chemically as well to allow the positive energy, the relaxing thoughts, to break through the wall that the prednisone builds up. At the mega doses he was receiving, maxing out at 160mg/day, it was a thick wall. We had our work cut out for us.

Our pulmonary doctor had told us yesterday not to ask when we would go home. The answer, he said, was up to Rich.

As always, the man speaks the truth.

We asked for the Xanax to be increased an additional dose per day to help cut through the prednisone-blues. From the rest of our bag of tricks, we pulled a remedy here and there. Overnight our discussion on mind over matter fermented and took hold. In the morning, the doctor was pleased with the improvement… as were we.

Yesterday they began cutting the prednisone dose in half. Today, half again. Tomorrow, the medication will no longer be administered through his port, but will be taken in pill form, finally down to the same dosage as his last discharge. Friday, we go home.

We begin to see prednisone loosen its grip. It will be a long two months for Rich to completely wean off this necessary bane. But with the coming of spring, we’ve got plans. And as for pneumonia, we’re thinking third time’s the charm… we’re pretty much done with it. There’s more to do in life than xrays and CT scans and nebulizers. We once more take our lead from Edward Magorium, proprietor of the Wonder Emporium, Toy Empressario, Wonder Afficianado and Avid Shoewearer who knowingly said, “Your life is an occasion. Rise to it.”

In the season of resurrection, it’s time for us too to rise to the occasion!

Daddy’s Moon Fall Down!

11021432_10152365067462824_628903663406885326_oThirty years ago, we would regularly take the kids to Old Sturbridge Village in Massachusetts for the weekend where we would always have at least one meal at the Publick House. On one such night, Rich was carrying Emily, who was not yet three, through the sandy parking lot and pointed to a full moon. “That’s Daddy’s moon. “ As he told her that, his legs slipped out from under him and he fell, protecting Emily from the fall. She sat up and said “Daddy’s moon fall down!” From that point forward, every full moon was identified by her as “daddysmoonfalldown.”

We were lucky last weekend to be able to revisit OSV and the Publick House with friends. Rich was given the all-clear by his team of doctors and we knew that going to a familiar venue would allow us a relaxing weekend away without the pressure to see and do everything. We would also once more go to the Salem Cross Inn and enjoy their fireside feast. Sharing it all with Arlene and Kevin would allow us to see it all with fresh eyes and we knew we had a team to lean on if we needed help. We are blessed with our friends.

The weekend was all we could wish for. Good friends, good food, good fun. The village was blanketed in snow but the skies were clear and bright. Peacefulness was everywhere. After dinner, as we returned to our lodging at the historic Oliver Wight House, there was a full moon. Memories made us smile.

We came back home tired but happy.

We knew Rich had probably expended more energy than he should have, but would spend the week to come resting and gathering strength.

But by Friday: daddysmoonfalldown. During the day, Rich’s breathing became ominously loud. The symphony of crackling, whistling and wheezing had begun again. We’d been told increase the prednisone if there was a negative change in his breathing as we weaned from this drug we so longed to be rid of. Reluctantly, we increased it and hoped for a positive result. Saturday morning we knew we were off to the emergency room once again.

Thankfully, the myriad of tests showed no sign of pneumonia. The CT scan that is done is much improved since last month. The xray shows some lung involvement but not enough to point to pneumonia. Worst case scenario, this could be just a blip in the PCP recuperation. We’re told, after more tests, that this time the culprit was the respiratory syncytial virus or RSV. Basically a viral form of the common cold, this morphs into a more serious disease in the very young and those, like Rich, who are immunocompromised, leading to bronchitis or pneumonia.

As Rich does things outside the norm, instead of cold symptoms, he jumps right to the asthmatic end of the spectrum which allows the doctors to throw a few antibiotics into the mix of increased prednisone… just to be on the safe side.

We spend a full twenty-four hours in the emergency room. At one point, he is to be moved into the hallway for what is known as “holding”… the status prior to getting admitted and assigned a hospital room. We ask the nurse to please double check on that move before taking us into the general area and we find we’re to stay in our ER room. We settle in for the night. Rich on the gurney and I’m on the floor, wrapped in my cloak but tired enough for it to be comfortable. The machines monitoring his vitals begin beeping again… his oxygen levels are dropping. The supplemental O2 he is receiving through the cannula is not enough. I request a mask instead of the cannula from the nurse in the hallway, but am told that it’s probably not necessary… until she sees that his levels have dropped to 82 while receiving oxygen. A mask is now set up. We settle back down but those pesky O2 numbers keep hovering in the danger zone. It’s decided to use a BiPap machine instead of the mask. This machine will allow Rich’s lungs to relax and let the positive pressure on both the intake and outtake be done by the machine itself. This brings his levels up to the optimum 100%.

There is one uncomfortable moment when the doctor discusses what our wishes are if his breathing should get worse… do we want intubation? While it’s always recommended to have health directives, the details of the moment really dictate what your wishes would be. How is it possible to predetermine what your decision would be for every scenario? Thankfully, although we approve any possible intubation during this hospitalization, it does give you pause and we’re glad that it doesn’t need to be discussed or implemented again.

82464_dedication_displayDue to the contagious nature of Rich’s illness, we’re moved to a more isolated in a private room in the holding area of the ER. This one affords me the luxury of sleeping in a recliner instead of on tile. We spend the night and most of Sunday there before we’re finally brought up to 4Monti where we once more have a private room. Certain precautions need to be followed to keep the spread of this virus within the hospital. Handwashing, masks, and what is called “droplet” protocol to protect caregivers who come in contact with Rich.

Because pneumonia has not yet developed, our stay here should be limited to a few days. The BiPap is no longer needed, the mask is also relegated to the discontinued list. Cannula will provide enough oxygen. The plan is now to continue the antibiotics to forestall any other opportunistic bacteria from taking hold. Prednisone, back to the levels from a month ago, will be the protocol to battle the RSV. Our despised but necessary medication will be with us for a few more months.

Once Rich’s breathing is able to hold its own without supplementation, we’ll be able to continue the recuperation at home.

Our pulmonary doctor says it best, “We’ll get you back to Massachusetts in no time.” Symbolically where we want to be… sharing and making memories with friends and family. We’ve had to take some proverbial rainchecks as some plans were put on hold… but not for long!

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.

10869536_10152338229227824_7684964186405537627_o

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.

Blessed.

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. ”

Yep.