Author: usewhatexists

This time of year always brings memories of vacations… more often than not of one National Park or another. The mountains and the canyons, the rivers and lakes, the deserts and the glaciers, the forests and the meadows. These places refresh the spirit, speak to the soul and call to us. They live within our hearts. We’ve been very fortunate to have experienced so many of nature’s wonders. The photographs and snippets of time that recall the days our family spent in the presence of such grandeur bring us peace at times when there seems to be none.

John Muir, the naturalist who was the voice for so many of our parks including the woods that bear his name and whose quote is the title of this post also said “The sun shines not on us, but in us.” The strength that is not currently in Rich’s muscles is certainly within his spirit! Outside forces are not what define us but it is what is within. We are blessed.

As Rich recovers from his latest hospitalization, we see that this virus did not do as much damage as the ones before… progress! His lungs still have a long way to go and prednisone and nebulizers are still a force in our lives. But there is progress and we rejoice.

As our minds begin to clear and bring us healing peace, we can’t help but reflect on friends, family, visitors to this site and those not known but who are also on their own path to find health and healing. Some have gone on before us, too soon, and we celebrate their lives and remember; some remain and continue their journey and to those touched by illness: we send hope for strength and spirit and the sun to shine within them. To the patients, the caregivers, and the ones who love them… we know your life. It may not be the same path, but there is a shared knowledge of striving to live life in spite of illness. We walk with you. Our naturalist and environmental philosopher also said “When one tugs at a single thing in nature, he finds it attached to the rest of the world.” We are together on this journey. We are connected.

“We are now in the mountains and they are in us, kindling enthusiasm, making every nerve quiver, filling every pore and cell of us. Our flesh-and-bone tabernacle seems transparent as glass to the beauty about us, as if truly an inseparable part of it, thrilling with the air and trees, streams and rocks, in the waves of the sun,—a part of all nature, neither old nor young, sick nor well, but immortal.”

We can’t get to our beloved mountains, rivers, canyons and woods right now, but we can, in the meantime, enjoy our small patch of garden right outside our door. Japanese gardens are symbolic of a larger landscape. A rock to represent a mountain, bonsai trees to mimic ancient pines and deciduous trees that have been shaped by weather. So our garden will represent to us the larger world until we can get ourselves, once again, to the majestic vistas we adore.

To make it easier on Rich, he of the unsteady gait and numb feet, we’ve had a patio made outside our kitchen door. Now when he goes to grill I won’t have to worry quite so much of a fall. The former uneven slates and grass that covered the area are now gone. For one night there was a vast sea of wet dirt that squished underfoot as we explored the space. Today, the patio is finished. While we look with pleasure at our new outdoor space, made friendlier to neuropathic toes, we do mourn the loss of our mud wrestling opportunities… gone before they are realized.

One more lesson to seize each moment as it comes.

So those Hawaiian shirts… the ones we were ready with so we could take our volcanic leap of faith? Yeah, those… we packed them into a suitcase in the middle of the night on Sunday and went to the ER. Rich’s breathing became more labored, his O2 levels dropped to 81. Generally speaking, levels are in the 95 – 100 range. His had been at 90 – 92 range most of the weekend… aka: acceptable but not great. 81 puts you in the respiratory failure category.

Once there, some blood work and some x-rays for diagnostic purposes show no pneumonia. It’s thought that “just” an exacerbated asthma attack. We rest uncomfortably throughout the day. No meds are forthcoming, no nebulizer treatments until we ask. The request for Tylenol for the slight fever and considerable aches is acknowledged but never materializes. Sunday overnight is apparently not the time to be sick. Sleeping in a stacking chair in the holding hallway is a contradiction in terms. We are beyond exhausted.

Our pulmonary doctor finds us. He asks them to take a nasal swab for viral causes. Hours later, it is done. A few hours after that, we find out that Rich has what is called human metapneumovirus or hMPV. Again, it’s one of those, similar to the RSV Pneumonia he had before, that will give most people a one day sniffle. For those like Rich who are immunosuppressed, it presents as asthma, bronchitis or pneumonia. We know we’re lucky when we’re told it has not progressed beyond asthma although it is affecting the lower right lobe of his lung. The symphonic whistling, crackling, wheezing needs no stethoscope to be heard.

Finally, after fifteen hours of mind-numbing discomfort that morphs into pain, we get admitted and a room… and what a room! Everyone should, at least once, get a virus that requires you to be isolated and with any luck they will put you in the Cohen Pavilion at North Shore. These rooms are not only private, but they are appointed with beautiful details… very soothing with a comfortable decor and a caring staff to match. Dinner is brought in, we eat, and promptly fall asleep until we’re woken three hours later for meds. We promptly fall back to sleep until, once again, 11:30 meds. We negotiate to forgo the 2am nebulizer treatment and opt, instead, for sleep. We promise to ring if we wake up and/or need another treatment during the night. Our angel in scrubs agrees. Blessed sleep!

While it doesn’t make up for the day before, the sleep has allowed our new morning to start off with some added energy. Rich’s breathing is improved while he rests. As he putzes around the room, he begins to have difficulty. Despite that, there is improvement.

With the start of the new hospital residents’ rotation, we have been bombarded by doctors with questions. They are thorough… they are everywhere… they are young! One stops in early enough that we can chat before I head out for work. Nick works remotely while he stays with Rich.

Reports of the rest of the doctors’ opinions keep coming in. Thankfully it’s determined to be severe asthma brought on by this virus. We have to wait it out while treating the symptoms with, dammit, prednisone. Nebulizers almost round the clock keep the airways moving. Nick sends notes of all the doctors’ chats.

I leave work early when I find myself falling asleep at my desk. As I return to NSUH room C370, I’m thankful to find Rich has slightly improved breathing and strength. There is still a long road ahead, but we’re seeing some results from the bombardment of drugs.

Although the diagnosis is different, although we are no longer in the Monti tower where our familiar faces usually greet us, we are, once more, being cared for by people who we trust. We have a new family of caregiving staff. We are blessed.

One year ago exactly, we were here at NSUH while Rich was being treated for pneumonia, his illness of choice. His stay then segued into the first of his RICE chemo cycles. There is a sense of silliness about the coincidence of this. There is also a sense of awe as we reflect on how far we’ve come and how interesting the journey has been.

We don’t know how long this setback will take, but we feel that we’re headed in the right direction… we didn’t get the worst case scenario and for that we are most grateful. Our hospital stay is expected to end before this Fourth of July holiday weekend begins. Even if it doesn’t, if we have to stay longer than we hoped still, life is good.

Patricia: “You mean you were diagnosed with something called a brain cloud and didn’t ask for a second opinion?”

We always thought it was funny when, in “Joe vs the Volcano,” Tom Hanks’ character is diagnosed with a brain cloud. And Patricia’s response above to Joe jumping into a volcano to appease the volcano gods because he’s got a brain cloud certainly mimics our thoughts. Really? You’d just accept that diagnosis?

It should then come as no surprise that when our son suggested that some of Rich’s balance issues might be ear crystals, we thought it was a joke. Ear crystals… you mean, like a brain cloud? But who knew… it’s a real thing. A few google searches and, yep, loose crystals in your head will make you dizzy. The crystals, of course, have the Latin name otoconia. Because doctors really can’t tell you that you have loose crystals. Not if they wanna be taken seriously.

Benign paroxysmal positional vertigo, or BPPV, is the condition whereby these crystals of calcium come loose in your inner ear and travel where they shouldn’t be. When they are displaced, they disrupt the flow of the fluid in your ear canal that acts as your personal gyroscope. Your brain gets the wrong signals and you feel like you’re falling. Our next step is to get a consult with an ENT to see if this is indeed one of the causes of Rich’s balance issues.

The other nemesis is the continued neuropathy. Without the feedback from the bottom of his feet, his brain, even though he may see a step or a curb, refuses to believe it’s there. Kinda like… a brain cloud? Nah. But it has been the culprit in a number of stumbles, the latest just as we went for our regular follow-ups with the stem cell doctor, pulmonary doctor, blood cultures and port flush. The idea is to use his cane to tell his brain that there is a step down. If he forgets to move his cane down first but instead moves it with his foot, the message never gets where it needs to go. Thankfully, no damage done this time with the exception of a couple of hearts beating a little faster.

Our team gives us good news that we’re on the right track. Lungs clear, bloodwork looking good. We’re now…. drum roll…. off of all prednisone! For two weeks, we have been steroid free. Even the Budesonide nebulizer is a thing of the past. The pulmonary doctor is pleased. Any effect on the lungs from being off these meds would manifest by now. All is good. The previous weekend for Father’s Day and Rich’s birthday, the kids could see the old energy coming back. Rich’s prednisone brain cloud was lifting. There are still many naps during the day, but there is a connection with those around him that’s been missing for some time. It’s good to see. Life is good. Til 3am. Then Rich wakes up with chills, slight temp, aches and a bit of a wheeze. Was that stumble in the parking lot more than the neuropathy? Was it, like in January, an indicator of a brewing infection?

Dammit

Tylenol for fever and aches, Budesonide and all its nebulizer friends are back on board.

We avoid calling the on-call doctors… we know they will recommend going to the ER even though Rich’s temp is below the “gotta go” levels. We opt for a wait and see. Temps taken every half hour. Monitor the highs and lows.

The next morning, we repeat the nebulizers and continue to monitor temps. I wait to see which direction his fevers and breathing will go before I leave for work. Once again it seems overwhelming. The possibility of going back to pneumonia after three months of lung health, after weaning off the prednisone and its demons, is hard to swallow. We talk to the doctors who also would like to keep him out of the germ ridden ER. They also opt for the wait and see.

When I get home from work at the end of the day, Rich is tired. He sounds tired, looks tired. Whatever is going on is knocking him for a loop. His breathing is slightly worse. We wait.

This morning, Rich wakes and his breathing is considerably worse. Back again are the whistles, crackles, wheezes …the symphony of a respiratory infection. We continue with our meds regimen while we wait for our general practitioner’s office to open. She’s not happy with what she hears in his lungs and, armed with a stack of prescriptions, we’re also sent off to get chest x-rays and admonished to call if anything goes downhill and to call our stem and pulmo doctor on Monday. Reprieve! We even negotiated and won to get a quasi- prednisone instead of the full bore demon.

As we’ve traveled on this journey, we have, with few exceptions, taken the setbacks in stride and looked for best solutions to get us back on track. Reset our goals and forge ahead. But yesterday morning was a tough one for both of us. Our renewed optimism on getting off prednisone, and getting some quality of life back was pulled out from under us and, like Joe Banks, I think we were both ready to jump into a volcano. Too much bad deja vu. Magic finger beds are not any fun when they are caused by fevers. We are so DONE with this. For heaven’s sake, we JUST LEFT TWO DOCTORS’ OFFICES WITH A CLEAN BILL OF HEALTH!

While Rich finally slept and I waited for the next time to take his vitals, I sat and cried. Good and hard. For a good long time. How wonderfully cleansing and empowering it was. I have said before how healing a good cry is, and that one, boy oh boy, that was certainly f*cking good medicine. This morning, I was stronger and ready to deal with whatever the health gods had in store for us. We’ve found that we don’t like to give in to pity, but that it is important to recognize when the senselessness of some of all this becomes too much. You just have to take the time to, in whatever way works for you, work through it. It’s fine to compartmentalize to get through the moment of whatever comes at you, but at some point in time even the best organized psyche needs its closets cleaned. How each person does, is a very individual thing, but those gut wrenching sobs did the job for me. It gave me the strength to deal with whatever prognosis came at us today. I was able to say, like our movie pal Joe Banks, “Dear God, whose name I do not know – thank you for my life. I forgot how BIG… thank you. Thank you for my life.”

Rich has been sweating toxins out and with fingers crossed, we see some slight improvement. For now, the doctor informs us, we’ve dodged pneumonia. We’re both ready for getting past this hurdle and once again bring back that energy spark we saw last weekend.

At a significant point in this movie that on the surface seems so silly but ultimately is a fable full of wonder, Patricia says, “Joe – nobody knows anything. We’ll take this leap, and we’ll see. We’ll jump, and we’ll see. That’s life.”

Yep. We’ll see! Bring on the volcanoes…. we’ve got the shirts.

A year ago we were up in Rochester celebrating our son Richard’s wedding to his bride Noelle. What an amazing day full of love and laughter with friends and family that had travelled for the occasion! A reading during the ceremony was from the novel “The Princess Bride: S. Morgenstern’s Classic Tale of True Love and High Adventure” by William Goldman. The passage spoke of the discovery of their love.

Westley said to Buttercup, ““Do I love you? My God, if your love were a grain of sand, mine would be a universe of beaches…I’ve been saying it so long to you, you just wouldn’t listen. Every time you said ‘Farm Boy do this’ you thought I was answering ‘As you wish’ but that’s only because you were hearing wrong. ‘I love you’ was what it was, but you never heard.”

The book and movie have always been family favorites. At the bookstore I worked in, Mandy Patinkin was participating in an event and our son, Richard, now the recent groom, was nearly run through with a pen while Mandy sneered at him in his Spaniard’s accent, “Hello, my name is Inigo Montoya. You killed my father, prepare to die!” The entire store roared with approval. I think Richard needed to change his pants.

Last month, during a rather nasty bout of food poisoning, I was so exhausted I gave up any pretense of being a caregiver and demanded some care for me. Since I kept losing anything I had tried to eat, my demands were really quite pitifully relayed.

Despite our rather messy conversation, Rich took our plan to heart and tried his best to get out of patient mode. He once again started taking care of small tasks around the house and running short errands locally. How wonderful to see him busy and how comforting to have my partner in crime back! Suddenly all I had to do was request something and he would reply as I have to him, “As you wish.”

But as we’re getting to the end of our prednisone dosages, we’re finding some side effects that were well hidden by this bane. Who knew that this medication that has given us so much grief and discomfort also protected Rich from other debilitating effects?

We’re now down to 5mg of prednisone every other day and within two weeks we’ll be off completely. Each time the dosage drops, there are the typical withdrawal symptoms which in so many ways, we’ve gotten used to. Usually just a few days and we’re past that hurdle ‘til the next dosage change. The past couple of weeks, though, we found it was worse. Our fear was, as the dose dropped so low, that Rich was undergoing an adrenal failure.

When you are on prednisone for the long haul, it shuts off your adrenals since your body is getting what it needs from the medication. If you don’t wean off properly, you don’t give those glands a chance to kickstart themselves back up you end up with Addison’s Disease and you can find yourself on prednisone for life. So we’re REALLY careful to take our time, much as we do get impatient with this nonsense.

When the bone and muscle aches started up, when the nausea and the feeling of disconnectedness come into play, when balance and coordination were once more an issue, when mind-numbing fatigue hit, we were concerned. Not only that we might be looking at adrenal failure, but that there was very little quality of life. Plans made were canceled or postponed as Rich spent his days ensconced in his chair of power… and although the recliner is mighty comfy, it’s not one’s life ambition to be there 24/7. It was once again my turn to say “As you wish” while Rich went through his own personal Pit of Despair. We’ve been here before on this journey… we can find our way out. With or without Fezzik.

All of this also meant we needed to do what we’ve been doing… Research…. Collect data… Look for a solution instead of only presenting the problem. Some mornings, Rich would wake up feeling quite well, in the relative scheme of things. And then it would suddenly go all wrong. We tracked and stalked, like Inigo Montoya after the Six Fingered Man. And, like him, we found our nemesis and were ready to say to it, prepare to die.

There are only two medications that he takes that could be the culprit. In this case, we reasoned, it can’t be the prednisone because, if it were adrenal failure, he would feel better after the small dose he’s on now… it would give him the needed boost. So, 6am and 6pm…. Two medications… voriconazole and acyclovir… both have the side effects that he’s experiencing. But only one is specifically only those times. The other has a noon dose. Can we come off this medication? Will it make a difference? Can we restore something closer to our accepted new normal?

Vizzini: “Inconceivable!” Inigo: “You keep using that word. I do not think it means what you think it means.”

Thankfully, not so inconceivable. With our prep work in hand, a quick call to the doctor and a review of symptoms, timing and reactions, we were able to remove voriconazole, the anti- fungal medication, from our roster of pills. It took a couple of days for the residual dose to clear outta town, but thankfully, the disconnected feeling and the general malaise is a thing of the past. The aches and pains remain and we’re hoping acupuncture will help clear those out. We know that is partially from the acyclovir but we have no choice but to hold onto that drug for now. It protects from viruses and specifically targets chicken pox and shingles. Until Rich can get all his childhood immunizations again, we’re stuck with this one.

Valerie: “The chocolate coating makes it go down easier. But you have to wait fifteen minutes for full potency. And you shouldn’t go in swimming after, for at least, what?” Miracle Max: “An hour?” Valerie: “Yeah, an hour.” …Valerie: “Think it’ll work? “ Miracle Max: “It would take a miracle. “

Our miracles continue and now we’re so close to the next milestone of saying goodbye to prednisone. That will certainly be a day to celebrate! We know it will take considerable time for us to see the changes in sleep patterns, neuropathy, belly bloat, moon face, dizziness… the list goes on and on. It’s been over a year on fluctuating doses so only time will tell how long it will take, but each day will be a gift of renewal. We’ll still have meds and their effects, no longer masked by prednisone, but with just two short months to Rich’s new birthday, we can honestly say, we’re close to storming the castle.

A Classic Tale of True Love and High Adventure?

As you wish.

The Caterpillar and Alice looked at each other for some time in silence: at last the Caterpillar took the hookah out of its mouth, and addressed her in a languid, sleepy voice. “Who are you?” said the Caterpillar. This was not an encouraging opening for a conversation. Alice replied, rather shyly, “I — I hardly know, sir, just at present — at least I know who I WAS when I got up this morning, but I think I must have been changed several times since then.” “What do you mean by that?” said the Caterpillar sternly.”’Explain yourself!” “I can’t explain myself, I’m afraid, sir” said Alice, “because I’m not myself, you see.”

When I was four, I contracted scarlet fever and spent many days lying on the couch in the living room. I’m told that at the time it was rather a scary diagnosis, antibiotics weren’t yet widely used, and instead I was given gamma globulin and lots of bed rest while my scarlet red skin peeled away. My companion was Cyril Ritchard, an Australian actor of some renown as Captain Hook in Mary Martin’s “Peter Pan.” My son would be more impressed that he was the voice of Elrond in the Rankin/Bass TV version of “The Hobbit.“

Every day, as I lay on the couch, my companion would read to me Lewis Carroll’s “Alice in Wonderland,” entertaining me with different voices and having a small wind ensemble play petite interludes between chapters. The gift of his company came to me by way of my mother’s best friend who we called Aunt Helen. What little girl wouldn’t love to have an aunt who made her living sewing small yet beautifully detailed costumes and dressing dolls for museums? Who would give me my own dolls with wardrobes she would sew? Who lived right by the World’s Fair in Queens and would take me on weekends so I could make yet one more plastic dinosaur? And she gave me, to keep me quiet during my recuperation, a boxed set of four vinyl LP’s with Mr. Ritchard taking me into that wonderland with Alice. Nestled in the bottom of the box was a red cloth-bound copy of the book full of John Tenniel’s illustrations. I would hold that book tight as I listened, finding the right pictures as the story unfolded.

I finally got off that couch having memorized a good deal of Alice’s adventures and with a residual effect of the infection having given me double vision. I was too young to remember seeing any differently so I didn’t ask myself as Alice did when she found herself in the small hall at the bottom of the rabbit hole, “I wonder if I’ve been changed in the night? Let me think: was I the same when I got up this morning? I almost think I can remember feeling a little different. But if I’m not the same, the next question is, Who in the world am I? Ah, that’s the great puzzle!”

Today, as Rich continues through his recovery, with digital audiobook downloads and instant streamed movies and shows to keep him company instead of vinyl records, changes take place as well. We continue to try to wean off the dreaded prednisone, the effects of which keep niggling at us… Muscles atrophied, lungs recovering, and a neck puffed like the bullfrogs that live by our pond. His hair seems to have some confusion as to whether it’s supposed to grow back or not but instead exists in blotches that stick out this way and that like the Mad Hatter. His adrenals running every which way making for some very odd days. Neuropathy stinging his feet. Balance is off… thinking is off… cognitively just not quite there. What changes will stay when all the meds are gone and what will resolve, we wait to see.

Which brings us back to Alice’s question… “Who in the world am I?” It is indeed the great puzzle!

Patient? Non-Patient? We’re quite in between!

Survivor for sure.

We’ve gotta get ourselves out of patient mode. While there are still restrictions and precautions, while we still have to think before we leap, we need to begin to get back to ourselves. Like my eyeballs that just don’t want to work together, there will be residual effects. Alice was not the same young girl that went down that rabbit hole. Our experiences change us, for better or for worse. But we’ll adapt and find a way out of our current rabbit hole and Rich’s current wonderland. We make plans. Sometimes we need to cancel them but then there are those wonderful times where we can follow through. Success!

Our team of gurus we see this week are pleased with the progress to date. Although our stem cell doctor calls Rich her yo-yo as he has been in and out of the hospital, we celebrate April as a NSUH-free month… the first of 2015! And most importantly, we celebrate the news that the latest PET scan has once again come back clean and clear… Rich has been in remission for nine months…celebrations galore!

We begin to add more everyday tasks to Rich’s day. Errands to run, small jobs to do. This and his dedication to restarting the exercises the physical therapist gave him months ago, with the pulmonologist’s approval, begin to show their effects in his stronger and faster walk. Within a month, we should be able to stop the prednisone. We need to be aware that his asthma, like his allergies, and his immune system, have all been reset. So we’ll need to keep that perspective if and when some wheezing comes back. We work out a plan for the next visit with the doctors to review other blood results, consider some medication changes once the prednisone is gone and hopefully resolve at least some of the issues we’re dealing with now. In the meantime, we rejoice in the progress we’ve made and continue to make our plans. Some we’ll have to cancel, but in time, more and more we’ll succeed.

As we look back, it IS a certain type of wonderland that we’ve been able to come this far, to celebrate this year’s journey, another twelve months of family and friends and being able, at the end of the day, to say, as the Doormouse reminded Alice, that it was all, really, very much of a muchness.

“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!

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!

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.

We 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!

Thirty 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.

Due 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!

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!