An Eternal Light

Growing up, there were always kids in the streets…. Playing stickball, riding bikes, chalking out hopscotch boards on the sun warmed cement. In the winter, snowfall brought sleds to the few hills we could find on the flat Hempstead plains, later farmland, that our town was built upon. So the sumps that reclaimed our rainwater or the woods nestled in the curve of parkway exits provided us with the vertical we needed to get some good speed on our flexible flyers. Building forts, snowball fights… voices carrying in the wind. Memories.

We were a loose ragtag group that all lived in the development of houses on the edge of our town.

We were separated from the next little village over by the remains of Old Motor Parkway. Part of Vanderbilt’s 1908 motorway that criss-crossed Long Island, it was now a kid’s paradise of wooded thickets and fields with intriguing bits of cement and macadam that reflected its earlier use. It defined us.

Bordered by what were then considered busy roadways, we were insular as a group. We were on “that side of town” so otherwise removed from the rest of our hamlet until we were old enough to brave crossing Glen Cove Road. It was, therefore, of no surprise that any kid in our neighborhood could and would be called on to fill out a pick up team or invited on an adventure.

Rich and I grew up in that same neighborhood together.

1471870_641700512553800_626832523_nMemories of knowing each other go back to his earliest cub scout days when he and my brother were in the same den and my mom one of the leaders. Billy and Rich grew up together, graduated high school together, and through our marriage, became family together. In 2014 as Rich left his stem cell cocoon, my brother began on his own series of cancer treatments complicated by the diabetes he had for forty years. Conversations that used to be “remember when we…” now became “what do you do when…” Billy’s treatment and its effects has never been my story to tell. His decisions and twists and turns on his path were never mine to relate. Forever, though, will his journey be entwined in ours.

15002360_10153519774067824_929218720042702253_oAs I lay awake at 3am those early post-hospital nights, finally back in our own home, my cell phone would ping a message “Are you awake? Can we talk?” and moments later I would answer my buzzing phone and we would be whispering to each other; shades of those times when one of us would tiptoe across the upstairs hall in the house growing up and sneak into the other’s bed to giggle and connive well after lights out… feeling like we’d pulled off a great coup in fooling our parents. The subject matter as we chatted was now more serious but the connection of those days when he would tease me by singing out to me “Missy-mou I love you” in a tangle of our Irish and Greek heritages, that connection was still there.

There came a time last year when physically we could not be together. With both Rich and Billy having compromised immune systems, the passing off of random bugs made it impossible. Nick and I tried but despite our best efforts to decontaminate ourselves on getting home from a visit, as if we’d been exposed to some sci-fi outbreak, Rich would end up in the hospital. It was a very difficult decision, but the consequences were too severe to allow. Our doctors had to finally put their collective feet down. But as Rich traveled some interesting roads to relieve his neuropathic pain, we always, at the end of each consult, discussed Billy’s own pain and his current treatments with our gurus to see if what we were about to explore could be viable for him. Always, his health and possible options were with us on our own journey and we’d share our findings.

As with many who find themselves in the world of severe and/or chronic illness, the concept of the “right” way to go, the “correct” treatment to take, the “proper” protocol to follow, is ambiguous. At first diagnosis you are overwhelmed. There are so many questions, there are so many days of anxious waiting, there are so many different answers. Finally, you connect yourself to a group of experts and you are then tasked to determine how much of a partner you will be with them. Do you question decisions or accept without hesitation? Do you research, explore, delve or leave it to their expertise? Do you conserve the energies you have or do you push past the ever-present fatigue? How much do you have to immerse yourself into your cancer life and how much of yourself can you continue to hold on to?

In reading forums and blogs these last few years, it’s been very apparent that there are as many ways to take on this illness as there are people who have been diagnosed. These decisions are very personal. Not just by agreement between caregiver and patient, but ultimately by the patient themselves. Many times have the discussions between Rich and I been lively as we weighed the options before us. Mostly we’ve been in total agreement, but as the one who has to deal directly with the consequences and effects of our decisions… there have been compromises for the sake of Rich’s comfort while balancing the needs of health… always, ultimately, he has had final say.

Have we sometimes pulled a few slightly unauthorized bits and pieces from our bag of magic tricks to get him the peace that he needed… absolutely! But overall, our group of gurus has been stellar in listening to what our concerns are and working with us for, not only the best possible outcome, but for the best possible quality of life. Are these decisions the same as someone else in the same situation would have made? Nope. Our journey is ours. We cannot speak of nor judge choices that others have made, only our own.

But having been on the other side of that mirror, we can understand the frustrations and pain of those who are bystanders with hearts firmly entrenched. It isn’t easy to see those you love struggle with these choices. As we have continually been lifted up and given strength by those who follow and support us, we have also been alongside and supporting those who are finding their path to health, recovering from treatment or, sadly, have left us too soon.

Names that are still on our list of guests here and elsewhere on social media belong to some who are now gone from this life except as cherished memories. The Greeks say “May their memory be eternal.” They live on within us all. One of those names on this list now belongs to my brother.

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On November 13th of this year, he peacefully died in his sleep from complications of multiple myeloma and diabetes. While others have celebrated and given tribute to his life and career in music, Rich and I find ourselves celebrating the boy we both grew up with. When we rejoice with his music, we remember him singing at our wedding. When we give tribute to his career, we remember his “job” as uncle to our kids that he was so successful in achieving and the love and laughter he brought them. We mourn the loss of our cohort who shared so many memories with us both. No longer will there be those “remember?” moments from him. We now carry the light of his memory within us. We are the sum of the people who have touched our lives. That they are gone does not diminish that sum, but increases the light within us. May it always shine brightly.

In this season of lights, we celebrate life in all its glory and cherish the memories of days gone by. Peace.

What’s-a matta you?

14138074_10153343859622824_8850222710769546087_oWe look out the bank of windows that are at the back of the home we rented for the week. At the end of the dock are our kids and their kids. Across the water, the sun sets behind the hills and the clouds sending rays of light and bands of colors into the sky. This has become a nightly ritual of appreciation. Drinks are poured and seats found as the time comes close. The littlest ones may spend just a little more time in the water while their parents enjoy the changing light. There is a peace that speaks to the soul. It gives us comfort.

On Canandaigua, we have all come together and the week is full of food, drink, laughter and family. Moments of joy are found everywhere. When two year old Bean sings the alphabet song to his baby cousin who smiles and laughs at the attention. When my mom is cooking in the kitchen with her grandson-in-law helping to lift and carry. When Richard tosses his nephew high in the water and Boober comes up out of the lake with a huge smile. When the game of Monopoly just never ever seems to end. And if it does, it will not end well. It never does.

14115514_10153343861857824_44245202119329942_oThe house hums with joy. Sun, rain, stars and clouds… we watch it all from hammocks, chairs, kayaks… fireworks greet us up the lake the first night. On the last, we give thanks. The next day we are to leave the lake and it is also the second birthday of Rich’s stem cell transplant. So the last night, in gratitude for the support we’ve had and the care we’ve been given as well as for his ever- improving health, we each of us send out a small candle lantern onto the lake as the sun is setting. One by one they bob away from the dock. One additional lantern is sent out for all of those who are on their own paths to finding health with prayers for it to come to them. The little lights glimmer as the lake begins to turn golden from the reflection of the sky. Our last sunset at the lake.

All week we had been having another celebration of sorts. The cymbalta that Rich had started had reached a plateau of helpfulness halfway through week two of use. The generalized neuropathy was improving and the spiking pains had lessened, but not to the extent we had hoped. We did not want to spend the week at the lake with exhausting pain as such a companion. We have an appointment to speak to a new pain group about ketamine, but with only a week to go prior to our departure for our trip, we needed a more immediate solution.

Medical marijuana was next on the list. New to New York as a legal option, there was little on the internet and what was there described a drawn out process. We had days before we left. Grace was on our side. We called our stem cell and pain management cohorts to inquire only to find that yes, our doctor was approved by the state to certify patients for the Rx. The response was near to instantaneous. Via email, we received Rich’s certification. We logged onto his NY State account that had been opened years ago for student loan applications. On the appropriate tab, his certification number was entered and the rest of the fields populated. We hit submit. And were approved. Within twenty minutes of our inquiry, we were approved. In two days, Rich would receive his necessary state issued card and we would make an appointment at the dispensary to fill the prescription.

In a rather nondescript medical office building, we buzz the intercom at a rather nondescript door. Rich is asked to hold his ID to the camera; we’re let in. The men in suits at the front desk resemble either bodyguards or hit men. We remind ourselves this is legal.

After a consult regarding options and procedures, we left with a few bottles of what was basically a pot-laced syrup similar to cough medicine. Rich began with the low dose as recommended and which seemed to have a slight effect within an hour. At about three hours, it seemed to have increased the pain relief tho’ it wasn’t a complete fix. We didn’t expect it to be since we’re just starting on the lowest dose. But it was an excellent beginning.

In a few days, we found we needed to change from the syrup… the amount of sugar was wreaking havoc with Rich’s stomach and he blew up like a balloon. We were able to consult with the dispensary’s pharmacist and nurse over the phone and it was decided the pure oil would be a better option. And so far it has been. Each increase in dosage has had an effect the first day with feeling drowsy… dopey. After that, it continued to do its job with better effect and a clearer head.

We do meet with the ketamine group… our special K’s. They give us more complete information during our consult than we had gotten from our pain management cohorts and it is less intrusive than originally explained. Rich would go once a week for a five week period, four hours per session for a ketamine infusion. He would be monitored as if he were under anesthesia, which in effect he would be. If necessary, he would go back after six months for a booster… a single four hour infusion. While the medical marijuana has less potential side effects, Rich has to take it in a timely manner three times a day for it to remain effective. And, to weigh all variables, we do have to consider that the potmeisters to not accept insurance. But the ketamine treatments would be covered. And, most importantly, the success rate is very high.

We decide that once the insurance approval process is completed, we will give the ketamine a try. The special K group requires Rich to have his cardiologist give his blessing as a precaution based on his heart issues during chemo. We will always have our reefer madness as a backup if the side effects are problematic and the infusions are stopped.

14102969_10153343860012824_5070539038206384639_oIn the meantime, our nights are less interrupted by the painful spikes of neuropathy. Instead, our week at the lake was spent, after those splendid sunsets, with our littlest grandson sleeping in the same room with us. As we drifted off each night, and looked over to him sleeping, we couldn’t help but smile at the lullaby that has once more filled our family songbook. It’s the same one we sang to this little one’s father. Life truly comes full circle.

And we accept its life lessons with gratitude and joy as the ditty runs through our head…

“What’s-a matter you? Hey! Gotta no respect What-a you t’ink you do? Why you look-a so sad? It’s-a not so bad. It’s-a nice-a place. Ah, Shaddap-a you face!”

“Second Star To The Right and Straight On ‘Til Morning. ”

DSC04152We danced. The culture of dance as an expression of celebration, rituals, a form of entertainment has existed in the mists of the ancient world. Dance survives, it sustains, it endures within us all today. And so, we danced. For the first time since Richard’s wedding two years ago, we danced. A simple thing. Two people, rhythm, touch. And yet, a long time coming. We danced at a wedding again while the stars reflected in the pond below the windows. Like we could continue on, as Barrie’s Peter Pan directed, straight on ’til morning.

One of the most persistent effects of all the beneficial poisons Rich has had over the last two years has been peripheral neuropathy. That pain that sometimes resembles the pins and needles of a foot fallen asleep, sometimes the stab of a knife, sometimes burning, sometimes numbness. The usual first line of defense is Neurontin which has worked well for him in the past. For all the nastiness that prednisone has presented, it was effective in masking the pain of PN. As Rich weaned off the steroids, the neuropathy came back with a vengeance. Added doses of Neurontin brought balance issues. For most of a year, we’ve been straddling the fine line between pain and balance. Sometimes with little success for either.

Our stem cell guru, as always, listened well and offered a referral to the center’s pain management group. In prep for the meeting, we sat with our red book with our meeting notes, meds history, calendar and the jottings of “between times”…. Those odd bits that take us by surprise between appointments and are worth noting for better or for worse. With that in hand, we put together a timeline of the ups and downs of neuropathy on our journey. We had an appointment and went prepared.

Again we’re thankful that the care we receive is coordinated through the health care system that is now called Northwell. Rich’s files are all accessible through their computer and very little of our story needs to be told. Our new cohorts have read up on us and we only need to fill in the blanks of our timeline: what worked, what didn’t, the best, the worst, where we are now.

It comes as no surprise since we’ve researched a bit on our own, Cymbalta is going to replace the Neurontin in our arsenal. This anti-depressant has had excellent results with chemo based neuropathy. Not the first time that an off-label use of a drug has been beneficial.

Our cohorts are not yet done. One of our observations is how willing they are to take their time to ensure we understand the plan completely. Their experience with patients in distress serves us all well. Despite us having been squeezed into a slot for this appointment, the team deftly manages two patients across the hall from one another without either of us feeling like we’ve been ignored. Before we leave, we’re told of further options should this one not work. We laugh to find it is an anesthetic used often for horses. This whole journey has had a bit of a Mad Hatter’s party about it.

Ketamine is used in lesser doses for humans but carries some risks. For our purposes, the doses would be even smaller still and administered via IV over a five day period every three months.

Both Ketamine and the Cymbalta have anti-depressive effects. Rich is currently still on Zoloft to counter the depression of his adrenals from prednisone. We’ve tried to wean off but it is still early days yet. It has taken at least a year post-steroid to be able to eliminate this drug in the past. We expect at least the same again, given the duration he’d been on it. But that brings up the question as to the conflict between meds.

Our team wants us to keep the Zoloft in our bag of tricks for now… until we’re sure the Cymbalta will do the trick, the powers that be don’t want to leave him without a needed medication. The doses are low enough and scattered during the day to avoid any problems. Neurontin is out and Cymbalta is in and Zoloft is continued.

And so we wait. We’re told two weeks should see a significant improvement. The first twenty four hours are a little rough. Outgoing meds have left the building and the new tenant has not yet settled in. The first night is long. The second is a little better. But then within days there are negligible results; but ones that make our hearts sing. The off-balance feeling that Neurontin brought with it is gone. The positional vertigo is still present but the added balance issues that were med-induced have faded away.

As the week goes on, more feeling comes to Rich’s feet. There is still a cotton-wool feeling between the toes that is not resolving. And when the barometric pressure indicates a storm coming through, the stabbing pain can still make him jump. But there is improvement. The frequency and the intensity has lessened. We’re now at a two week mark. Is it enough? We have another couple of weeks to go before we meet with the pain management cohorts again. We look forward to our discussion.

In the meantime, Rich’s pace has improved. And the best comment of all, the one that makes my eyes sting and my heart skip a beat is when he comes into the kitchen and says “I’m walking with confidence. I don’t need my cane.”

Confidence.

It is advised in Peter Pan that“The moment you doubt whether you can fly, you cease for ever to be able to do it.”

I’m sure if we can now dance, we can fly.

Deportation and Unassimilation

225672_10150182626467824_3242997_nAs we sit on the swing by our little pond, we watched the butterflies flitting about the garden. A copper-roofed birdhouse swings in the breeze. From under that little roof bits of dried grass, yarn and the flotsam and jetsam that make up a finch’s nest have been pushed out the side. Our occupant has begun re-arranging the furniture to prepare for the next batch of eggs.

We too have been busy in our house; spring cleaning has been underway, little by little, since we returned from our trip. One by one we’ve tackled each room. Donations have been picked up. And then there is our box. The bigger box that has held any number of elixirs, potions and pills that have been with us on this journey.

Filled to the brim, it’s time to say goodbye to many of these little miracles that provided relief and kept us on track. It is bittersweet to go through this box. We say a small thank you to each as we set it aside for disposal. There is a feeling of ceremony. Each bottle brings back a memory. We thanked thorazine for quieting the barking seal that the hiccups brought and we remember the overnight chemo where we recorded the sounds that reminded us of San Francisco’s piers and then could not stop laughing when we played them back. Which brought on more barks. Which brought on more laughter. What a catch 22 that was! We thank the tincture of opium which our gastro guy called “the plug” for its effectiveness in stopping the months of non-stop diarrhea. This cure discovered too late to allow Rich to attend Nick’s college graduation, but what a wonderful memory of us sharing the moment of him walking across the stage at Cooper Union via today’s technologies. We thank the lasix for deflating the pontoons; gone before we could test water walking possibilities. We thank the ambien for restful nights but mourned the end of the midnight food fests.

And so we continued through the box. One by one taking a moment to remember with gratitude these companions along our journey. And celebrating that they are no longer needed. Mepron,Voriconizole, Simethicone, Budesonide, Emla, Valium, Morphine, Dilaudid, Omeprazole, Sucralafate, Lomotil, Colace, Senekot, Ativan, Zofran, Emend, Pantapropazole, Ferrus Sulfate, Vitamin C, Albuteral, Spironolactone.

The box was like Mary Poppins’ bag which held all manner of items and had an endless bottom. The list continued. On and on we gave thanks and said our goodbyes.

And in time we came to prednisone. Bottle after bottle of varying doses. It has been our bane but it has been our companion too. As part of the chemo cocktails, it not only worked against the cancer cells, but it also helped to keep at bay the worst of the reactions to the other beneficial poisons. It relieved inflammations from the continued bouts of the different pneumonias. It was a necessary evil that we didn’t welcome but we are grateful for what it was able to do.

Of all the medications, this end was the most celebrated. But at the same time, perhaps the most necessary medication of all. And so we thank too those many corticosteroid bottles for their help along the way. And celebrate that they are no longer needed. We visit our stem cell guru. Rich receives his booster vaccinations. It will be a year before we’re ready for the next set. His bloodwork shows that we can now say goodbye to the folic acid. The first indication of a problem as we started this journey was anemia. That we can eliminate yet one more supplement, one of the first, that helps the body with anemia and to grow new blood cells is another indication that we are on the right path.

We are nearing full circle.

Our box is slowly emptying out.

Tomorrow we say goodbye to another stalwart companion. Our One of Nine will be disengaged from the Borg collective. Rich’s port will be removed. Cyborg no more. In preparation, more blood was collected, this time to check the clotting factor. The tube, that runs from the port and protects Rich’s blood vessels from the toxic burn of the beneficial poisons that make up the chemo cocktail, that catheter lines his jugular vein. We prefer no bleed outs. Tomorrow we will be thankful.

The port has been a less painful option for infusions and blood draws. We are grateful but it is time. We’ll say our goodbye with appreciation. Another ceremony. For the first time in two years, Rich will no longer wear the bracelet that identifies him as having a power mediport. He will have been deported. Another milestone.

But first there is work to do. We need to prepare. Let the manscaping begin!

Take a Giant Step Outside Your Mind

“…Remember the feeling as a child When you woke up and morning smiled It’s time you felt like you did then. There’s just no percentage in remembering the past It’s time you learned to live again at last. Come with me, leave yesterday behind And take a giant step outside your mind.”

This song has been a little earworm going ‘round and ‘round in my head for the last few days. We find ourselves excited with our Icelandic adventure to start in a few hours tho’ there is just a tinge of apprehension coloring our plans. This is, for us, a huge leap in Rich’s recovery. In the past two years, we’ve taken weekend trips to visit family or traveled with friends. The support has always been close by and there always has been accommodation for Rich’s needs. Tonight we step onto the Icelandair plane and take, as the Monkees sang, a giant step outside our minds.

With us will come our assortment of medications both required and emergency. Rich’s cane will be our companion. We’ve opted for tours instead of our usual take charge kinda travel. Our schedule is varied but gentle. Our trip is a quick five days. With all these precautions, we’re still trying to get out of the patient mode that has deviled us on our journey.

“You stare at me in disbelief You say for you there’s no relieve But I swear I’ll prove you wrong. Don’t stay in your lonely room Just staring back in silent gloom. That’s not where you belong”

Ah, patient mode. We were well on our way to getting out of that gloom when just about a month ago Rich woke up with chills. Dammit. The Magic Fingers Bed was back with a vengeance. It took a full hour to stop the rigorous shaking that exhausted him and left him aching from head to toe. A handful of meds to counter the symptoms of an infection that seemed on its way, we waited for the doctor’s office to open.

I went to work figuring that this would be a quick Tamiflu script and we’d be fine after a few days. This was the first time in these two years that I was not planning on going to an appointment with Rich… because, you know, we’re getting outta patient mode. As I was speaking in a meeting at work, I suddenly stood up and said “I have to leave” and walked out the door. It was odd how strong that feeling was.

Rich was already en route via taxi to the doctor’s office and I texted him that I would meet him there. By the time I got to Great Neck, he was waiting in an exam room, having had an xray of his lungs to rule out one of the vast arrays of pneumonia he seems to latch onto. We sat and chatted while we waited for a doctor to see us.

During the short wait, Rich became uncomfortable. He complained it was hot which to me was understandable since he still had his hat and coat on. The complaints continued tho’… quite unlike him. The light was off in the room as is our wont. We find it easier to relax in a dim room when we’re in situations that could be tense. We’ve at times joked around by putting a candle gif on our phones and pretending we were on a romantic date; anywhere but a doctor’s office.

This time the romance ended when Rich started making heaving sounds. I flicked on the light and could see that this spasm wasn’t coming from his stomach but from his throat. I asked him if he was ok and there was no response. I got up, saw he was pale and clammy… beyond his glasses, his eyes were rolled back in his head as he continued to make these retching noises. I called out for help and the staff responded quickly, checking his vitals and getting him on oxygen… and calling 911. He pinked up quickly and came around though for the life of him he could not figure out how many fingers the PA was holding up in front of his face.

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And so started a thirty-six hour marathon stint in the ER. The one place we didn’t want to be. Rich does get a separate room when he is in the emergency room because of his lowered immunology. But as a melting pot of germs, it’s still not optimum. His blackout was probably due to dehydration and a drop in blood pressure but being a single incident and his diagnosis to be otherwise Type A flu, we began our campaign to get discharged which was not as easy as one would think. Until our pulmo guru came on duty and stopped in. Immediately he was on board to get us home even while the hospital was prepping a room on the cardiology floor. Once again we are filled with gratitude for the team we have. They listen to what we say and respond with common sense. We’re blessed.

Once home, Rich’s recliner became his cocoon as he worked through the effects of the flu. We were again sleeping in the little room on the main floor as stairs were not yet possible. The walker was brought back into service. And yet it was good to sleep on something other than the cold tile floor. It took two weeks for him to begin to get to where he had been before this episode, the Tamiflu knocked back a good amount of the discomfort relatively speaking, but slowly progress was made.

And now prep for our trip began in earnest. But this episode did raise some flags we had thought we could put away for good and brings us the slight apprehension that we are doing our best to totally disregard. Instead we’re focusing on doing what we love most together… seeing new sights, meeting new people. The weather holds no promise for a viewing of the Northern Lights, the Hákarl fermented shark will still probably be the worst tasting thing we’ll ever try, and English will not be the first language of the citizens of the city we’ll call home for the next five days, but our itinerary will be more than we could have dreamed of doing a short six months ago. And for that we’re grateful. It’s time.

“Come with me I’ll take you where the taste of life is green And everyday holds wonders to be seen.

Come with me, leave yesterday behind And take a giant step outside your mind.”

I Sing the Body Electric

Walt Whitman wrote in his poem:

I sing the body electric The armies of those I love engirth me and I engirth them

They will not let me off till I go with them, respond to them And discorrupt them, and charge them full with the charge of the soul.

Rich’s PET scans, CT scans, MRI’s, X-rays, all reminded me of the first line of this poem. The same line that Ray Bradbury, one of our favorite authors, used as the title of one of his short stories. The same title that the song from Fame used, the lyrics to which include:

I sing the body electric I glory in the glow of rebirth Creating my own tomorrow/When I shall embody the Earth

It’s always seemed fitting for Rich.

With the cancer related deaths of David Bowie and Alan Rickman among others in the entertainment industry this week came an avalanche of media reporting that all included the phrase “battle with cancer.” And so Walt Whitman’s armies spring to mind once again.

We haven’t felt our particular journey to be a battle but the attention to the phrase brought about some research that made us think. In retrospect, perhaps battle is not such a bad term at all. It has its roots in Old French bataille from Late Latin battualia. The dictionary gives it to mean “exercise of soldiers and gladiators in fighting and fencing.” Not perhaps appropriate. The Latin from the Germanic battuere means “beat” which is one of our goals. Modern definitions include combat, conflict, contend with, struggle, or engagement. OK.

There is certainly struggle with cancer and its treatment… another word that seems to pop up when talking about cancer. And while we’ve had our struggles, again, not a word that would immediately come to our minds. We’ve definitely been in conflict with cancer… it has different agendas than we do. And yes, we’ve engaged cancer in a type of combat by throwing whatever weapons we can find at it. But again, none of those would totally define how we choose to view the last two years. There are different types of battles… battle of encounter, battle of attrition, breakthrough, encirclement, envelopment, annihilation. Certainly chemo is one of attrition… we strive to have lesser losses than cancer. Breakthrough… yep. Get through those defenses to find the vulnerable flanks. Annihilation… yeah, that’s been our end goal from the get go. Destroy the basterd. Those definitions would again negate our viewpoint.

But just as there are multiple types and definitions of the word battle, there are also numerous ways to approach it. If we were required to battle, our view would be more like Jujutsu… the martial art whose name can be translated as “the art of giving way.” It uses the enemy’s energy against themselves and thereby neutralizing their threat. So many of the modern chemo cocktails do the same, as we’ve learned on our journey; using the DNA of the cancer cells to neutralize them. We strive always to continue forward, not retreating in the face of an obstacle, but searching for resolution, a way to slip past. Rich has plowed through, courageously in my opinion, the side effects of cancer and its treatment. Sometimes it’s been a fight to do so but overall, these words that define our journey as an aggression just don’t seem to fit.

We’ve striven, over the last two years, to look at this as a puzzle to be solved. A path with detours to take. A goal to reach by the best means possible. By treating it that way, we tried to eliminate the angst and tension that the word battle brings to mind. While not passive on our journey… everyone needs a good compass to guide them… we have attempted to meet the challenges head on and be as best prepared as possible. When we approach our journey this way, we leave ourselves open for the joy in life instead of a focus on the negative.

We can visualize this path we are on as one of the many wooded paths we’ve hiked and see the obstacles cancer has put in our way as the temporary moments they are… to be considered no more than a rise in the path, a boulder on its way elsewhere, a sudden stream from a quick rain. We navigate them and continue on and marvel at the light as it filters through the branches when the sun peeks through the clouds and we know we are where the universe means us to be. We fill our spirit with these images.

1888842_10151973357547824_8882923113914141903_oAs we moved past the treatment phase and into the recovery, our journey was even less battle-like although our many trips to the hospital may not have seemed so. Before Rich went into the hospital for his last chemo marathon and the stem cell transplant, we went to the beach. Our first summer that we were dating was filled with sand and surf, a crowd of us filling the bus to either the north or south shores of Long Island. But this day, fatigue made it impossible to get to the water’s edge; instead we sat in the sun on the boardwalk and in the distance we could see the water’s tide moving in. The water would then pull back out but with each incoming wave, further up the sand the edge of the surf would come. Two steps forward, one step back, two steps forward… This movement of the water defined our experiences this past year. Like a tide coming in, we’ve had our forward movement, sometimes too slow to discern, but always there. A stumble back, temporarily, then stronger again forward. Progress.

In the dark of the night, when negativity can give way in a tired mind, the zen of the ocean’s heartbeat gives strength that we have been on the right path. There is a peace in that rhythm. That we will reach the point on the beach where we need to be. This has served us well. By releasing negativity and the tension of battle, we can use our reserves of strength to move on.

1540368_10152866330392824_7866573503062585462_oAnd moved on we have. With the new diet that we began in December has come new strength and clarity. We spent Christmas week in Rochester welcoming to this world our newest grandson and luxuriating in the frenzied activity of our other two. Surrounded by family, we reveled in the holidays. We made sure the Rich did not overdo but it was apparent that his energy levels have improved significantly. Our stem cell guru, who we saw before we took to the road, was thrilled with his progress. While acknowledging the results of the new diet, she said that many of her patients report that at a certain point in time after weaning off the corticosteroid, it seemed like a light switch turned back on. We rejoice in the evidence of this bane’s release. We still need to watch the gluten/fat/dairy/sugar involvement in our diet… there are swift and uncomfortable ramifications if we don’t… but it is good to have confirmation that prednisone’s grasp is gone. Fifty pounds of bloat have gone and we begin to see the end of the moon face as well. Our pulmonary doctor reports the best lung function testing that Rich has had in the last two years. His immunology is such that he can have the pneumonia shot. We pray 2016 will be pneumonia free. In the spring, our eighteen month old will begin his childhood inoculations all over again.

We welcomed in the new year with friends and looked forward with hope. As we rested on New Year’s Day, rejoicing that Rich was able to stay with us throughout the night, we discussed again our story.

What has defined us in the past and what would we want to define us in the future? Discovery through travel has been what we have missed the most. The planning as well as the journeys themselves are filled with fresh ideas and engagement with the expanded world around us.

And so, as has been one of our goals, we once again look towards seeing new places, meeting new people and learning new things. Debates continue as we consider the pros and cons of various travel destinations we have been dreaming of. While Ireland has been on the top of that list, there is so much to do there that requires more energy than Rich yet has.

In the end, we decide, with the help of a serendipitous Groupon, that a tour of Iceland is our next goal. The half days we’ve planned of mellow activities like lounging in thermal pools and one full day of touring in a comfy motor coach going from volcano to waterfall to geyser to rifts between tectonic plates seem perfect for our current state. The right mix of rest and mild trails and stunning landscape. A trip not too long in length, but enough. It will be a blessing to see other shores where those tides that empower us have landed.

We decide to listen to Mr Bradbury when he said, “Stuff your eyes with wonder, live as if you’d drop dead in ten seconds. See the world. It’s more fantastic than any dream made or paid for in factories.” If we should chance to have all the celestial requirements in alignment, perhaps we’ll experience the Northern Lights and charge our souls.

350 Degrees of Kevin Bacon

Our limbo world has been a very curious thing. We were neither here nor there. We’ve rid ourselves of various meds and have seen slight improvements, but not as much as one would think. We’ve taken our baby steps and implemented what changes we could and saw some progress. But again, not as much as one would think. Each step forward seemed to have a few backwards just waiting for us which is to be expected but the travel has been slow and less than steady.

As we pondered lately what we would want our story to be, we felt there was something we were missing… a key element to a more significant improvement. Feet still swelling, fatigue still present, poopathon still rolling along. How are we going to manifest the future we envision for ourselves if we still reside in the half world of a patient patient?

As with most of our insights, we needed to gather data. What variables exist in our day that would make one day any better or worse than another? And so, Rich became my research project. Each night a discussion on how he felt with an analysis of food, activity, contact, sleep patterns… you name it, it was dissected. Google research began… reviews of our notes from doctor’s visits, in depth study of our calendar… all our collected information cross referenced. Ah! The romance of recovery! Such pillow talk!

And then one very, very odd event.

I had decided to make bacon jam for some holiday gifts. The bacon was cooked, the fat rendered, the onions caramelized. The pure maple syrup, brown sugar, pepper and hot sauce were all blended together. It was time to slow cook it all into a compote. Rich was on crock pot watch. And by the time I got home from work, we had an excellent batch of bacon charcoal. Black, crumbly, and yet, tar-like charcoal. Our guy had reported that it had burnt… but for some reason, he refused to turn off the crock pot. His reasoning was that I hadn’t told him to. So for an additional seven hours after he felt it had burnt, it continued with heat, all the while the smell was bothering him… but still, he would not turn off the crock pot.

On a number of levels, this was disturbing. And required some consideration. As a type II diabetic, I know that high blood sugar levels can make it hard for me to concentrate and my thought processes get pretty fuzzy. We know Rich’s blood levels are elevated from the prednisone but for some reason, he can’t stop snacking on carboliciousness even though his body doesn’t really give a shit as to why the glucose blood work is high. Doesn’t matter that it’s ‘cuz of his meds, side effects still present themselves and yet, he resists any attempts to lower his sugar intake. This 350 degrees of Kevin Bacon was our turning point.

Since we’ve started this journey, Rich’s eating habits have changed. First, we had to eliminate certain foods that would irritate his cancerous stomach ulcerations and foods that could cause nausea. The chance of a fatal perforation was a very real threat so care had to be taken. As chemo continued, tastes and diet changed once again. The medications prior to the stem cell transplant to protect his stomach and esophagus led us in other directions yet again. The early months post-transplant had its dietary restrictions. This past year with its prednisone intensity brought a whole slew of carb laden cravings followed by a loss of appetite. Stomach discomfort and the continual poopathon seemed to beg for comfort foods. Peripheral neuropathy reacts well to B vitamins… so, sure, add in those yeasty foods. The guy who had snacked on brussel sprouts for decades was long gone.

But looking at the whole picture… activity (or lack thereof), food, medication, symptoms, sleep patterns…again, as a whole instead of bits and pieces, the magic of google began to divulge some possibilities. The discussions on irritable bowel syndrome seemed to have the most significance. Interestingly enough, joint pain, a daily complaint, is a symptom.

One of the many things I’m thankful for is that Rich is, for the most part, open trying whatever craziness I propose. But sometimes it’s all in the timing. While the efforts to get him to move towards more veggies and less carbs has been met with resistance and some half-hearted attempts during our time on this path, following our creation of bacon charcoal he was ready for a change. Sometimes our own odd behavior will force us to rethink and revamp. This was one such time.

Based on the IBS diet, carbs are reduced; gluten and wheat products eliminated or brought to a significant decrease. Same with dairy. Cashews were replaced with almonds. Simple proteins and fresh veggies are our menu along with the elimination of condiments with their hidden sugars and salts. Manuka honey, which had such magical properties and got us through some tough times with stomach pain, is now verboten. Rooibus tea replaces coffee to eliminate the caffeine.

The results are almost instantaneous. Each day there is more energy, more clarity of thought, less bloating, less swelling. At the end of the week, we’re stunned that the relatively small changes that we’ve made have had such an impact in such a short period of time. Just like his allergy shots from the ‘70’s and his childhood vaccinations are no longer effective, what his foods his body tolerates has also been reset. This is such a powerful change.

The story we want to tell of our lives is ready to be manifest. If these changes continue, if our new year leaves this past year of pneumonia and prednisone and mental fog behind, if we can truly begin to set ourselves onto a new path to create our new future, then we can be well satisfied. The possibilities we could only dream about can become our new reality.

Leonardo da Vinci, a man that knew a thing or two, said “It had long since come to my attention that people of accomplishment rarely sat back and let things happen to them. They went out and happened to things.” By once again taking control of our future, we’re ready to go out and happen to things.

As we settled down for the night thinking about our plans, the old roar and rumble of Rich’s stomach has now been quieted. Luckily, his snores have continued to serenade me at night.

Live Long and Prosper

Two faves converged on November 10th this year. The Oatmeal, that marvelous online comic by Matthew Inman, and Star Trek came together in a poignant story of a moment in Gene Rodenberry’s life.

Growing up, Star Trek was one of the shows that brought our family together in front of the TV. Not for my brother and I the Lawrence Welk show… nope. We watched the future…. Going boldly where no man had gone before. That it ended up in syndicated reruns very quickly didn’t negate the attraction to the show. We continued to watch, exclaiming “Aw! This is a GOOD ONE!” virtually every time.

Rich and I continued that tradition as we dated, being attendees at the first New York City ST convention. We went to Nassau Coliseum to see Gene Rodenberry speak and to see the infamous blooper reel as well as the first pre-Shatner pilot episode on a big screen. Our son Richard was a very convincing Spock one Halloween. Yeah, we’re fans.

This particular day the online comic caught my eye, not only because it looked like a major departure from the artist’s norm, but also because of the Star Trek connection as it described Roddenberry’s actions as a crew member during a commercial plane crash in the Syrian desert. He calmed passengers and rescued them from the burning plane. But it was the last panel that truly resonated. The one that sums it all up:

“This story is not intended as an ode to Roddenberry, although he certainly deserves one. Prior to working in television, he was a decorated WWII pilot, a plane-crash investigator, and an LA cop. He survived three plane crashes. This story is intended to remind you that our journeys are short. Roddenberry saw life’s ephemeral nature lit up against a backdrop of stars. He saw that we are all passengers pitching downward into the night. He saw that we are all helpless. So get up, and help someone.”

From that moment, Roddenberry changed the direction of his life and turned to writing and television; creating Star Trek… a show that in many ways became a moral compass for so many of us.

Sometimes, when you get up and help someone, that someone is also yourself.

We’ve been trying to change our direction as well… trying to get out of that patient mode. To do so, we continue our baby steps concept and it seems to be working. Right now, our going boldly is tentative. After our night in the city, our next big event was travelling to Atlanta to celebrate our cousin’s wedding. We were so excited to celebrate the union of this wonderful couple and at the prospect of seeing family that we had not seen in close to a decade… from literally all over the world. We had four weeks to prepare.

Our usual pre-travel precautions were put into place: car service, airport wheelchair, an ion treatment for our hotel room to ensure allergens are removed. We also had to get Rich fitted for a rented suit to deal with the prednisone weight.

Before we traveled, we visited the cardiologist to check on Rich’s swollen legs and make sure that they would not be an issue for flying. A sonogram revealed no clots… we’re approved for travel. Compression socks are recommended during the flight. In an odd twist of medical multi-use, Rich is given a prescription for Spironolactone to help with the edema. The monograph from the doctor lists one of its uses as a birth control pill. The internet explains that it’s used to treat precocious puberty. Puberty??? He’s barely past being one year old!!! Manboobs are a possibility?

We decide to test drive the socks. At first we think we have the wrong size… no way is that little tube gonna fit those cankles! The doctor told Rich the swelling is to well above his knees. But some more internet research and some careful cankle measurements and indeed these are the right size. Thankfully, there are internet instructions on how to get these buggers on. Success!!!

1836728_10152765430177824_6597185865145480321_oOur travel weekend continues our baby steps approach. We arrive in Atlanta the night before the wedding. The next day, we meet up with our family for lunch and afterwards Rich opts to go back to the hotel to rest instead of sight-seeing with the rest of us. Later we get ready for the night’s events in a leisurely manner and we consider it a success that Rich is able to stay for a few hours at the venue before he heads back to the hotel.

Rather than pushing, he spends all day Saturday alternately resting and sleeping before meeting up with the rest of us for dinner at the hotel. Sunday we meet up with family one more time. Then it’s back to the airport for what turned out to be a marathon wait through a number of cancelled flights. As the hours wore on, Rich was fading fast. We finally reached the end of the possibility of flights home for the day with none actually going to our destination and we had to rebook; refusing any early morning flights or anything other than non-stop. Rich’s comfort and recuperation needed to be taken into consideration.

At the hotel the airline housed us in overnight, the staff was nothing if not gracious and accommodating. We were granted an extended check out time so that we didn’t have to sit in the airport any longer than necessary. We were put on a concierge floor which included an amazing breakfast buffet in a cozy lounge. After the stress of the cancelled flights the day before, this was a welcome respite. They even provided wheelchairs for the return to the airport, making our return home ultimately rather unremarkable.

Thankfully, Rich’s birth control pills were effective in bringing his edema down… still there, but improved. His lack of menstruation doesn’t seem to bother him.

We meet with our stem cell and pulmo gurus. We are granted a great gift… we can stop the prednisone. We’d been at a mere 1mg per day along with two twice daily nebulizer treatments. We can eliminate all steroid meds but one nebulizer and that we only need for another two weeks. Our wheezing watch begins. Within a couple of days, we hear a whisper of wheeze. We keep the duoneb for a day or two before going back on the plan to stop. This is not the time of year to be careless.

Getting off the prednisone is a big leap… we hesitate to jinx ourselves by celebrating it too soon. We’ve tried and been unsuccessful before… ending up with infections or asthma attacks that have hospitalized Rich. But as we look back, we see a pattern that gives us hope. Pneumonia has been on the back burner for months. Each hospitalization has been milder than the previous. We knock wood and cross our fingers. The Greeks are all spitting at the devil. There is no evil eye too remote to help us ward off repercussions of celebrations.

We have been told that it takes two weeks for the effects of being off the prednisone to show and in the past that has held true. We tentatively celebrate.

We continue to review the current list of medications and look to see what we can eliminate. There are some medications that are necessary to continue, either for heart health after the assault by the chemo or for immunology protection. Those are not ours to change. The immunology meds are to remain until Rich’s childhood vaccinations are re-administered. The prednisone has to be clear of his body before they can begin… hence our tentative celebrations on its demise from our box o’ Rx. Our next attempt at stretching our boundaries will be to wean off the Neurontin to see what the status is of the peripheral neuropathy without it.

It’s important that we try to get off of medications as quickly as possible to clean Rich’s system of these chemicals that do so much good but have the ability to do so much harm. It’s a fine line to traverse and we hope to get as close to med free as possible. But it’s clear very quickly that Neurontin is here for a while more. Within a day the neuropathy is making his feet jump at night from pain. Thankfully, the medication’s return has results just as swift.

We unfortunately have the need to start up some other meds this past week. As if to celebrate an anniversary of health status, the runs are back almost a year to the day. Immodium and then the prescription Lomatil are back on board to stem the tide. We need to contact the doctor to get tested for that dreaded c-diff again and refill the Lomatil. With luck, we won’t need to visit the opium den again but if we do, it’s good to know that this option exists.

We research and find this poopathon can be a side effect of the prednisone withdrawal. Rich’s been on this steroid almost continually for eighteen months and at times on extreme dosages… there is just so much built up in his system and the very slow tapering can’t totally compensate for this. We look at this latest development as evidence that the prednisone is on its way out. And with it begins to go the bloat… the ninety-five pounds of water weight that would just not go away over the last year is slowly, very slowly, beginning to resolve. While the process itself is not what we would prefer, if this is the way we get past the steroids, then so be it.

When this newest development comes to an end, it will truly be time to find a new direction.

To reach for the stars.

To Live Long and Prosper.

Longest. Ride. Ever.

About twenty years ago, our family found ourselves at Hershey Park. While the older kids went on the roller coasters, I went with Nick on all the rides more appropriate for the three year old he was then. One of which was a kiddie airplane ride where you could control the height of the little plane you sat in as it went round and round. Nick and I settled into our mini two seater and, with big smiles, waited for the ride to start. When it did, I realized that Nick, who didn’t like the motion, had slithered down by my feet. To anyone watching, it looked like I was the only adult on this embarrassingly small ride. There was nothing to do but practice my Queen Elizabeth wave and smile as we went round and round. Every time I tried to make the plane go higher, Nick would start screaming at me as he sat scrunched down by my toes and I had to lower it back to a mere hover. So there I sat, two inches above the ground, a grown woman sitting apparently alone in a vehicle meant for a child no higher than three feet tall and going nowhere really really slowly… waving. Rich, meanwhile was gleefully snapping photos. This was the Longest. Ride. Ever.

Right about now, Rich and I feel like we’re going round and round on the longest ride ever and sometimes feeling just as ridiculous with our precautions as I did that day on that little plane and getting nowhere reeeeeally slowly. We’ve been trying to make changes but it’s hard to think of yourself as a non-patient when every time you begin to increase your activity levels, you end up back in the ER. As we are finding, “Progress is not accomplished in one stage.” Victor Hugo was right when he wrote that.

And we always seem to have a crisis moment after those doctors give us a big thumbs up. After our round of stem-cell-birthday doctor appointments August 27th, we began to look ahead to our F*ck Cancer celebration scheduled for Labor Day weekend. The kids were all coming down from Rochester with lots of family and friends joining in. We were a week away! We finalized our menu and went over the details and started up the stairs to bed. Near the top of the stairs, in seemingly slow motion, Rich began to fall, collapsing in on himself. Shaking, he grabbed the railing and, with me close behind, made it into our room and onto our bed.

Out of nowhere, his temp was 102, his O2 levels 82. Body aches were starting up. Suddenly his breathing was the full symphonic again. The guidelines we have dictate if a temp of 101 or more is not resolved with Tylenol for more than 20 minutes at a time, then we need to go to the ER. All temps should be reported. The O2 levels were problematic. A cough is brewing. If we reported this to the on-call doctor, they would advise to go to the ER. Rich was refusing, putting me in the middle. So, instead of a phone call, it was time for some fast footwork.

First, ignore the phone. Then begin some regimens for these symptoms. Tylenol, Nebulizer, and luckily, a supply of the antibiotic Levaquin is on hand. Shortly, the O2 levels are back up, the temp is normal and we’re hoping the antibiotic is working its magic. We’ll see how the night goes. In the morning, Rich’s temp is still normal. Throughout the day, his O2 levels vary which doesn’t make me comfortable, but he pleads to stay home. And I don’t blame him. The lack of temp indicates Levaquin was the way to go… this is a bacterial something or other that was brewing. With luck, we’ve caught it in time. We spend Sunday resting from the long watchful night and monitoring those oxygen levels that can’t stay in line.

By Monday, there is significant improvement… O2 remains a steady near-normal. We call the pulmonary doctor who isn’t happy we didn’t phone over the weekend but is in accord with what we dispensed and understands our need to stay out of the ER. We agree to notify her with any negative changes.

Now’s the hard part… keeping Rich rested so he’s well for the party. And thankfully he is. “To succeed, planning alone is insufficient. One must improvise as well,” said Issac Asimov, one of our favorite authors. So we improvise by bringing Rich’s Ikea chair (Poang!!!) and ottoman into the garden for him to relax in. Like a pasha, everyone will come to him for the bulk of the day…to greet his guests by getting up and down or standing for long periods couldn’t be an option… he’d be down for the count before the appetizers were done. And our plan works. Most of the day was spent in the chair but as the sun began to settle down, Rich then was able to get up and mingle, stopping at various tables to sit and chat. He only stepped away from the party for his timed nebulizer treatments. It was a triumph for him to be able to spend the entire day surrounded by so many friends and family, all of us celebrating that he’s in remission. Celebrating with gratitude for the support of everyone that helped us with love through the darkest of times and to find joy in the lightest. Those who were there in spirit followed us as well. It was magical.

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On Monday, Labor Day, we rang the farewell bells as we watched our kids drive off to their homes in Rochester. The house now quiet, we relaxed and enjoyed the aftermath of a wonderful weekend; reliving all the special moments, unwilling to let it end.

As we had for the past week, we continued to sleep on the main floor, still hesitant to try the stairs too soon. We settled in for the evening. Rich’s cough, though, kept tickling his throat. His side mildly sore from a week of coughing, the muscle pulled from the exertions. Overall, not problematic but annoying. Yet in an instant his body is in conflict… a cough and a sneeze explode at the same time and it’s as if his rib is physically torn apart. He screams in agony, holding his side as he falls out of his chair from the force.

Immediately, Nick and I rush to get him to the ER, calling the doctors on our way. Once there, like that little plane so long ago, the ER moves slowly on holiday weekends. After what seems an interminable wait, Rich gets a CT scan… riding off on the gurney smiling and waving goodbye to me like Queen Elizabeth. Like me on that stupid plane. As night once more becomes a new day, we get the results: lungs clear…rib unbroken… muscle torn. Sent home with oxycodone for the pain and valium to relax the muscle and advised to see our doctor within 24 hours. Thankfully: discharged. We feel reprieved.

The following day we visit the pulmonary doctor. She confirms the finding on the radiologist’s report and sends us home with some cough medicine with codeine to use in a few days when the ER meds run out. Calm the muscle, let it heal. Happy the lungs are clear.

Two weeks later, there’s still some pain… gotta be careful not to use core muscles for now… but overall healing. Cough for the most part is gone. Creeps in when Rich gets tired, but mostly gone.

So we continue to make plans. This time we revisit one we had to bypass in the spring when Rich was not up to the event… seeing the new show “Something Rotten” on Broadway. What better time to go than Broadway week? We forgo dinner in the city… that would make the night too long right now. Rich instead decides we’ll walk to and from Penn Station… it’s a beautiful night, just right for a slow stroll.

And it works. Tons of laughs, lots of fun. Great night out.

And we pay for it the next day. Exhaustion, swollen legs, foot pain and that pesky rib acts up. This on top of the continuing prednisone withdrawal and all the baggage that it brings with it.

Which all begs the question, how do we get out of this patient mode? Part of it is physical. But as the saying goes, a body in motion stays in motion – A body at rest stays at rest. We come up with a plan to create a routine of small tasks that will make the house run smoother and get our non-patient out of patient mode… work the mind and body.

The harder part is the mental. How do you stop thinking of yourself as a patient when every time you try, albeit by going unintentionally overboard, it sets you back? The frustration is overwhelming. We feel lost.

Baby steps seems to be the key. And that’s a hard way to proceed when you really haven’t done baby steps in sixty years. It is dispiriting when so many attempts create such havoc, but we have to learn from each one that the amount of extra effort needs to be very carefully calculated. And that there will be setbacks, but we can’t let them stop us in our tracks. One of Rich’s favorite pastimes is cooking. With the restrictions he’s had and the exhaustion, both mental and physical that the medications bring, he’s not had many opportunities this past year. But with Mr. Asimov’s words in our head, we make a plan to find interesting simple new recipes and Rich will go grocery shopping each day for fresh foods to fill the ingredient requirements. His day will be filled with preparing dinner with rests in between so as not to overdo.

For two days, we have excellent results and delicious meals. And then a fever flares again. We sit and look at each other. What to do? It’s not a huge temp… it just hovers above the “call it in” level. We decide to ignore it. It responds to Tylenol… we wait til morning and discover then the fever is gone.

We discuss how, pre-cancer, this temp wouldn’t even be a blip on the screen. Rich probably wouldn’t have even taken his temp but brushed off the chills he felt as a result of a rather cold marketplace. We discuss how our need to respond has changed with each successive fever over the last nine months. This time, there is no change in breathing or oxygen levels. The only medication needed was a couple of Tylenol… no nebulizers, no ER visit. In the grand scheme of things, this is an indication of some very significant improvement! We begin to move mentally out of patient mode. We’ll need to keep aware of body changes that could be problematic but decide that with caution, we can analyze these changes and review them with a fresh perspective.

The theologian Martin Luther wrote a commentary on the New Testament’s Epistle to the Romans. This book in the bible is full of focus on spirit… grace, transformation and salvation… a fitting one for our current place on our journey. Luther’s commentary says “To progress is always to begin always to begin again.” And so, as always, we begin to begin again… towards grace, transformation and salvation.

Renewal.

Joy is in the ears that hear

Each year, there is a unique gathering of people. In a sleepy suburb with long driveways, at a certain time of day on a certain day of the year, if you look closely, you will notice an increase in cars parked along the side of a certain road. The owners of these cars all seem to be headed towards just one of those long driveways, curiously laden with chairs, coolers, tables, umbrellas and, every now and again, a grill.

Rich, Nick and I have been blessed to be amongst those whose car is parked and whose hands are laden. And when you get to the backyard of that certain house, magic occurs. Music fills the air for hours on end and there is such a celebration of life that it fills your soul and blesses your spirit.

I’ve always felt there is something special in the harmonics of music. That moment when you are in a chorus, singing out, or in a band, or orchestra, playing your instrument and the air simply buzzes with the shared frequency of the music. It’s like nothing else, you feel it in your core. When a chord progression is so unexpected and yet so beautiful, it can bring tears. The emotion of music. The feeling. We’ve seen its power.

There is a wonderful documentary on the effects of music on those with dementia called “Alive Inside.” The trailer alone can make you feel the joy that music brings to these patients. My father’s Alzheimer’s took him to a different place in time than the rest of us. Regardless of where he was in his space/time continuum, Nat King Cole or Glen Miller could always grab his attention. If he was anxious or restless, their music would always settle him down. Gone would be the demands to go home to that “other house,” instead, he would sit contentedly and tap his fingers to the beat and sing along.Certainly does “Musick hath charms to soothe the savage breast.” Its effects are so deep and elemental that dementia can’t hide it away. The memory of those times with Dad run deep. Our daughter Emily, as she drives the kids back and forth to their activities, will play that same music and brings those days with her PopPop back.

Our son Nick spent a good part of his toddler-hood in silence. When his vocabulary dwindled, one word was always to remain… “music.” And at one of his IEP meetings with the school district where we mapped out our plan for him for the year, his therapist said “We recommend additional sessions of music therapy and dance music therapy.” When asked the reason she replied “Because he loves it so.” This spoke to us, not only because of the sensitivity of the therapists who worked with him, recognizing the response he had to music, but to the power that music had to reach a child who did not make eye contact, did not cry out loud, did not laugh out loud. But put on the CD of “A Child’s Celebrations of Song” and Nick would be sitting rapt, in front of the speakers. In his own way of speaking, he would call out his names for the songs as he heard them. “OH! ‘DucklinDucklin’! Is ‘DucklinDucklin’!” Oh the delight! Eyes wide, face brimming with excitement. And as Hans Christian Anderson, whose biographical movie spawned that “Ugly Duckling” song once said, “Where words fail, music speaks.” It has that power.

Lately… and once again… we are in the dark grey days of prednisone withdrawal. That dysfunctional adrenal land where there is no energy, no appetite and the days have a monotonous sense of everlasting sameness. Drab, dull, dense. We had thought we’d be in a different place of recovery by now. Instead, it seems to be a continuing loop of prednisone withdrawal. As always, Rich’s patience for this phase of treatment and his strength of will is inspiring. We continue to look forward the end of the tunnel but some days that tunnel seems just so long! To counter these effects we map out plans: theater tickets, upcoming weddings, gatherings. Things to look forward to. Richard and Noelle’s new baby in December to welcome. Life is good! Some plans may have to change, but sometimes it’s the planning that holds our excitement.

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In the midst of these dim days, it was, therefore, an especially wonderful moment when we sat in our chairs in that yard on that road on that day surrounded by that music. Rich leaned back in his chair, pained neuropathic legs raised to keep the swelling down, eyes closed but with a look of peace that had not been there for a while. The absolute power of music made physical. He lay there and let the sounds, the harmonies, the frequencies of our friends’ voices flow around and through him. It was a magical moment when the confluence of memory, fellowship and sound all merged into one. Alive Inside.

Each year in that yard, t-shirts are sold to raise money for breast cancer research. This years’ t-shirt says “The Ends Justifies the Meades”… Thanks to Greg and Kathy for once again hosting Meadestock, where magic is made. And thanks to all the Meades for your continuing love and friendship. No justification needed. Priceless.

Footnote (non-neuropathic): Joy is in the ears that hear…the title of this post kept on popping into my head. Where it is from and how we came to find it is unrelated to this particular story in some ways, but in others, so right. Rich and I were on our honeymoon, coming back from California on Amtrak when the train stopped for a while in Philadelphia’s 30th Street Station. I got out to stretch my legs in this magnificent station and wandered, as is my wont, towards a shelf of books in a corner store. All the selections were of the “I’m OK, you’re not right in the head” kind of books. Except for one… a SF/Fantasy book. Our shelves at home have a place for Tolkien but for the most part, we go for the more science based fiction within the genre. The Dune books straddle that very fine line, the Myth series made us chuckle for a book or two, but for the most part, dragons didn’t fall into our norm. Give us some Arthur C. Clarke or Ray Bradbury any day. I’ll hitchhike any part of the galaxy. Once I picked up the Shannara series of books by Terry Brooks only because the cover art was by the Brothers Hildebrandt… and I love their Tolkien calendar art… but was wildly disappointed. If Mr. Brooks could have stolen more of the plotlines of the Lord of the Rings, he would have had to have called is hero a hobbit. But I digress. Here I was with a dilemma as I searched for some reading material and the only thing available of interest was yet another probable rip-off of Middle Earth. The cover even hinted of a bit of the Brothers’ artistic style. I vowed that I would demand a refund from Del Rey books if this turned out to be. Maybe even send the Messers. Hildebrandt a sternly worded note regarding their business choices. Little did I know purchasing that book, “Lord Foul’s Bane,” would start us on a captivating series that spanned thirty-six years of its writing.

Saltheart Foamfollower, one of the Seareach Giants, the Unhomed, is a character that makes us smile, regardless of where in the story we are. His words, the full quote, seem so apt for the journey that we’ve been on… “Joy is in the ears that hear, not in the mouth that speaks. The wold has few stories glad in themselves, and we must have gay ears to defy Despite.” Once again, we’re reminded that it is how we approach what life brings us that makes all the difference.

The universe is trying to tell us something!