“Cut my pie into four pieces, I don’t think I could eat eight.”

Two days have passed since the Sunday we entered the chaos of the ER. Rich has been, the most part, reclining in his hospital bed, and it is amazing how busy one can be while motionless in a hospital bed. The long night in the ER gave us very little time for sleep and morning came too early. A virtual revolving door brought on a Q&A marathon with each specialty having their own focus. In many ways, this is a boon for the mystery we hoped to solve before our unplanned detour. Throughout the day the new doctors that have come on board since we’ve last been here have us repeat our history as well as what has brought us here this time. As well as the floor staff, our main gurus from each division that has been part of our journey have stopped in, ordered tests and discussed their differential diagnoses. More and more are we partners in this journey; having been managing Rich’s health outside of the hospital for the last two years. There is a comfort to the coordination that happens inside. This coordination also allows for the tests’ results to be further analyzed and lead to additional tests. Conclusions can be made quicker than on our own.

What seemed to be a huge step backwards is proving to be a blessing. Answers are coming fast and furiously during this admittance.

As always, once we reach a certain level of health, each consult ends with us requesting release. Yesterday was too soon but we did let our wishes be known. And we are heard. Our nurse advises us that for the most part, our intravenous meds are being discontinued… a sign of prepping for discharge. We are told that our pulmonologist is in the deciding vote… and we know his views on getting us out of here.

We work subliminally on our team. Rich is no longer in his bed, but we have breakfast sitting in the chairs with the hospital table between us. IV removed, he wears a t-shirt. We create a vignette of health; looking out of place in this hospital room. All indicators of illness are removed from view as much as is possible. Our plan is to take a stroll or two so the staff will see us up and about, as we do every day. It shows our determination to take our care back into our own hands.

This has worked for us before. We look forward to getting back into our own routine. Our own home. We know that once Rich’s health reaches a certain point, we need to be in our own space for the best healing.

We look forward as well to seeing the doctors this morning. We look forward to seeing them in the appointments made last week for the end of the month. We’re pleased that tests that we had anticipated for those appointments have happened already thanks to this admittance. Only the PET/CT scan remains; it’s scheduled for just days away. A delay may be needed as we do not want the pneumonia to give false readings. We consider making a second appointment for the following week just in case.

Twelve hours ago, Rich was given a three-hour infusion of Immunoglobulin. Amongst the tests administered since our admittance, we’re told that his immunology is off balance. We’ve always known the blood counts need to be on our radar and this one, as we’ve indicated before is the one we’ve been watching closely. It has been on a slow rise but never quite reaches the level we need. This infection brought it down by 100 since our last in depth bloodwork. We’re told that this indicates that he could have developed, since the transplant, an autoimmune disorder that creates that imbalance. And that a simple, periodic treatment of Immunoglobulin could be the answer we’re looking for. It’s something to keep in mind. We don’t need more side effects so it’s not a quick jump onto the bandwagon.

And now we do know that we will be going home today. Our determination for best impressions has paid off. Cardio came in and cleared us for discharge. Next was Infectious diseases. They are the kingpins this go-around… it is this group’s determination if the antibiotic that is only available by IV can be discontinued. We agree that we’ll contact them if there is any degradation at home. We laugh that we had plan B in place to convince him just in case and he feels, with the other antibiotics we’ll be supported by orally, we’ll be fine. Besides, we give him little choice.

The rounds by the other doctors will now be to discuss post-hospital plan for care. As we have appointments scheduled with them already, it will be more protocol than a necessity.

It’s just a matter of time and paperwork. Every hour, another confirmation of our leaving or another step closer.

We’ll be home by dinner. Sprung!

And in honor of today’s date 3/14/18 as well as the title of this blog post, credited to Yogi Berra as we enter baseball season, we’re prepared.

Happy Pi Day!

To Be Like A Lotus

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Our little pond in our tiny yard has been a source of calm in our lives. Each year we patiently wait for the leaves of our lotus to unfurl on to the surface. Later the flowers poke their buds up and spread their petals towards the sun. These same flowers retract under the water at night.

It is because of this rising from the mud that the lotus plant is associated with rebirth. From darkness, beauty. They teach us patience and show us we can rise above the miasma that sometimes finds us.

The past few months have seen us anywhere from the summit of mountains to the muddy muck of ponds. While our personal highs and lows have not been such a roller coaster recently, there have been moments where they felt that way.

Rich started his latest ketamine treatments in the middle May and went on into June. He had a small bout of pneumonia somewhere in the middle. Some antibiotics and six-day pack of medrol (steroids-lite), nebulizing over and over for months to come and we figure we’re good to go.

At the end of June, we reached a summit. Literally and figuratively. We set off for Maine by way of New Hampshire and Sturbridge Mass, singing in the car at the top of our lungs. Rich was at the wheel for the first time without another driver in the car to relieve him when he got tired. No more belt and suspenders… we were on our own.

Sturbridge has always been a place of peace for us. So many wonderful memories of family weekends… quiet winter mornings and hearty meals by the warmth of the fireside. Newborn animals in the spring, kiln fired pottery in the summer, the change of seasons and a chance to slow down. This was now just an overnight stop along the way as we traveled north, but, as always, it refreshed our spirits.

Rich’s feet were now renewed with ketamine and MMJ keeping the neuropathy at bay. The open road lay before us. The fog lifted from the White Mountains of New Hampshire as we drove, the peaks revealing themselves slowly through a haze. Adventure was in the air. Our plan for these next two days? Mountains… glorying in the mountains. We were not climbing and very few trails had our names on them.

Music blasting, open road, singing at the top or our lungs

As has been our need these last few years, we’ve made adjustments. On this day, we were traveling via train through the valley of the White Mountains and into the Notch. We would sit in a dome car, sheltered from the intermittent rain, and watch the waterfalls, gorges, woodlands and vistas through the windows of the vintage rail car. We would marvel as the walls of the notched stone closed in on either side before opening once more to the valley view below. We ate in the period dining car, reveling in the flavors and views.

The following day we found ourselves on the summit of the tallest mountain on the East Coast… Mt Washington. Here, the highest winds on the planet have been recorded. The old summit observatory and stage office displays a plaque on its exterior: 231 Miles Per Hour. We are awed to see this same building has thick chains that go up and over the roof in three places… secured into the granite to keep the roof, and the building, from flying away.

Despite our gear, we did not hike to this mountaintop. Rich’s feet and lungs, though so improved on his current regimen, are not up to the task. Instead we travel as others have for almost 150 years, we take the cog railway. Our fascination with trains has not prepared us for the wonder of this ride. It is not the view that captivates us. We can barely see through the clouds as we ascend; indeed, the fog itself rolls through the open windows of the car. It is the engineering that brings us such delight. What imagination!

With this help, we stand in the mist of the clouds at the top of our world. And we grin happily as if we had walked every step of the way. Success!

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Our weekend continues and we’re ultimately back home, tired but content. We have not seen the stunning landscape that the telescopes promise at the top of Mount Washington as the clouds never rose enough and we could barely see three feet ahead. But the journey itself was the prize. This could never have happened within the three years since Rich’s diagnosis.

The wheezing, though, never quite went away from the pneumonia. We check in with our pulmo doctor who recommends, cautiously, prednisone. A small dose. Rich agrees… it is time to hit this with all we can and get it gone once and for all. And so once more our beneficial bane is back with all its accompanying side effects. The second day on this med and Rich has had enough. The doom and gloom of the adrenals is hitting and hitting hard.

The morning of the third day I leave what sounds like a rather hyperbolic message with the pulmo doctor. Quality of life is gone. We’re in the muck. She know us.  She know we don’t exaggerate. We’re to stop prednisone immediately and to continue with the regimen of nebulizing. No need to wean off as the dose was so small and for such a short period of time. We’re relieved. Ready for that lotus to push through and blossom once more.

That relief is short lived. The two days later Rich is on his way to pick me up at the train station and his eyes are full of tears. He admits, it’s been a rough day. When we get home, the truth of that statement shows how inadequate it is.

Prednisone has many side effects and we’ve dealt with most. For whatever reason, it now manifested itself as it had never done before. As he drove down the street, Rich felt an overwhelming urge to open his car door and jump out into traffic in front of a moving truck. Again, his strength leaves me in awe.

The psychosis that prednisone can inflict has hit hard. He fought back and won. The doctors are stunned to hear this latest development. And yet, they nod. It’s a known problem. We spend the weekend on tenterhooks to keep this demon away.

By Sunday, in all ways, we can breathe a sigh of relief. This has passed us by. And so, we spent a weekend a month later celebrating Rich’s third year post-transplant. The roller coaster continues, but we honor our journey to date and give thanks for the life we live.

One of our celebrations found us in an apartment in Brooklyn attending class. Before us were a selection of mostly primary colored acrylic paints, some brushes, and canvases with dried lotus leaves applied. We spent the day mixing colors, some ending up the same color as the mud from which these lotuses grow, and applying the paints to our textured canvases. What a reflective and yet spirited adventure this was! We hang our masterpieces in our home proudly.

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A few weeks later, we spend some time once again the mountains, this time in the Catskills of New York. Our weekend is one of appreciation. Appreciation of the journey we’re on, the light and life we’ve been given and the beauty around us.

Some of that beauty in the amazing meals we enjoy by chefs who know what they are doing. Some in the architecture of mansion along the Hudson that we visit. Most of the beauty we celebrate is that of artisans, certainly more skilled than ourselves, who show their work at a juried festival we attend.

On our way back to Long Island, we stop at the botanical garden in the Bronx where we enjoy the artistry of Chihuly and of nature in bloom. There we find, within the garden’s, ponds displays of lotus, rising through the murky water, from their roots in the muck of mud, to reveal the light and color to which we humans can only aspire to replicate. From the depths comes beauty that raises us up to the light.

And for that reason we continually celebrate.

Rebirth.

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Be sure you put your feet in the right place, then stand firm.

Abraham Lincoln was quite right when he offered that advice. And it has not been as easy as one would think!

As January came to a close, the little twinges of neuropathy that had lain dormant since October began to show themselves. Rich’s balance was starting to once more resemble the sailboats we watched on the lake last summer… there was a slight list and occasional stumble. We met with our ketamine team and they advised another five-week session. And asked if we could wait until April so that we had a six-month span between treatments. Not a problem.

There is a certain frustration that most patients have with their health care and that is either waiting in offices forever or waiting for an appointment itself. When you aren’t feeling well, in whatever shape that discomfort takes, that frustration is magnified. We’ve found medical offices each work differently and sometimes the doctors themselves are not aware of how theirs truly work. We were told the insurance approval and appointment scheduling was under way when we saw the K doctor in February. We would start at the beginning of April.

Long story short, when we called in mid-March to find out about our appointment we were told it would be mid-May… they were booked til then and they had just gotten Rich’s file. We asked to speak to the doctor himself. Now, Dr Ketamine is a very nice man. He treats his patients with respect and care. His manner suits our ways. He’s direct. And he took our concerns to heart and is very much a partner in our journey. Rich was immediately scheduled for a one-time four-hour infusion, a booster, right away. There were no other appointments to complete the once-a-week-for-five-weeks infusions but this small gap existed for us to slip into to hold Rich over until May.

As we thanked him for this, we also admonished him, he needs to change his dialogue with his patients… his office does not run the way he thinks it does and to present that expectation is to set patients up for disappointment. He agreed. We learned a valuable lesson. We had gotten complacent with our stem cell team who took control of our appointments once we were in their hands. That time is now past. Another milestone slaps us in the face and tells us to wake up!

As I have often said of Rich, I am in awe. The pain he dealt with before these ketamine treatments or every day when the ketamine wore off is astounding. And he always handles it with humor and stoic resolve. But in March just before the infusion booster, as he pulled off his socks at night, the internal screaming was beyond containment. That moment when he would sit and lift his foot to prep for bed was put off until there was no recourse but to get on with it. And hope the meds he just took will kick in soon. His shoulders would shake in an effort to control the sobs. It was impossible for us to wait two months. As Rich said today in wonderment “I didn’t know it could be so painful under your toenails!”

That booster in March eased the pain slightly but was indeed just a stopgap. It was not long before the nighttime rituals were dreaded once more and the cane was again needed to keep him upright. We are determined to maintain a strict six-month rotation on the schedule to avoid this gap going forward.

Abe is also quoted as saying “Most folks are about as happy as they make up their minds to be.” Indeed. Throughout our journey Rich has had such humor about each situation we have found ourselves in. He has made up his mind, as that man whose likeness is now carved on Mount Rushmore has said, to be as happy as possible. And it manifests itself in so many positive ways, despite his ongoing neuropathy.

Two days ago, my brave and strong-willed husband began the road, once again, to relieve this pain that plagues him. We’ve started, as we did seven months ago, the four-hour infusions once a week for five weeks that will ultimately have him without pain on his radar. As we left the facility, we couldn’t help but laugh at how this building has no hand rails on the steps leading to the sidewalk. They house this ketamine group as well as a spine institute… wheelchairs to assist in the lobby for patient use. And yet… no handrails? Feet and brain were temporarily disconnected as we attempted those rail-less stairs. We roared in amusement looking as if we just left a late night of imbibing at the bar; holding each other up. The cab driver looked at us warily, hoping, I’m sure, that we were not his fare! For a couple of days, Rich will have this loopiness but we hope once more that instead of those blade-like stabbing spikes and internal screams, he will soon glory in the feel of texture on his feet… warm sand, fresh-mown lawn, cool stone. Or as he did in January, the feel of his grandsons vying for his attention as they clamber to his lap, his feet their boost up.

Mr Lincoln was also known to say, “We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.” I do know for certain Rich will meet the future as he has done so far, finding the roses and not the thorns despite their efforts to prick.

/bləd/

Blood: The fluid circulating through the heart, arteries, veins, and capillaries of the circulatory system. Blood carries oxygen and nutrients to the cells of the body and removes waste materials and carbon dioxide. What a simple definition for an amazing thing! Along our way these last three years the one constant has been the importance of blood tests. Vial upon vial has been drawn and analyzed.

16361_20140513_161438_displayAt various point in time, our focus on the different parts of the reports that have been generated with each drop that has been put on a slide has differed depending on where we were on our journey. Rich’s first blood test gave us the initial indication that there were concerns.

Three years ago when we came back from welcoming our little Bean into our lives, Rich was so tired that he went to get some blood work done. Our primary care group, as we have reported here at the start, were brilliant in putting a few clues together and sending Rich to his gastroguy and the rest is our history. Once chemo started, our focus was on those white cells, red cells and, particularly, platelets. When the counts got too low and chemo delayed, platelets and iron-rich red cell infusions were added to our schedule. As we got closer to the end of outpatient chemo treatments, everyone kept their eye on the stem cell count so as to catch the best chance of harvest. Once admitted for isolation and the week-long bombardment of high doses of chemo cocktails, the red/white/platelets were back on the daily reports.

We knew the day Rich’s bone marrow died. We knew also the day that those precious stem cells engrafted, eight days after the transplant, and began making new marrow… a day of quiet celebration. Since that point, the blood work has been an indicator of Rich’s continued recovery. Finally came the time that the platelets were stable; slowly getting close to where they need to be. Anemia gone. Still we watch liver and kidney function… those poor organs whose job it is to clean the body of the beneficial poisons that were so crucial for ultimate health are still struggling to catch up. They’re still on our radar.

But when we look back to the time after we left the hallway within a hallway, our little room that reminded us so much of our Amtrak cabins, our focus has been on Rich’s immune- suppressed system. Every blood work since has been a study of the immunoglobulins… the antibodies that are found in our blood. These can tell us where Rich’s immune system is up to… or, as has been since his new birthday, down to. Our reports show the three of most concern, IgM, IgA, IgG continue their very slow rise.

As anyone who has followed our journey here knows, the first year after leaving our stem cell cocoon, Rich caught any bug that happened near him. Pneumonia being his illness of choice, we became well versed in protocol at the ER. Our pulmonary gurus went so far as to forbid him to sit in their waiting room but had a clean room set up for him whenever we had appointments. The blessings of health care providers who really care have been with us on our path.

Our latest bloodwork shows that Rich has gone from a low of 345 in September for the most important (to us) immunoglobulin, two years after his transplant,to a much improved 656 mg/dl this month. Normal range is 694-1618 mg/dl… so close! Our doctor had said she’d be pleased as long as it was above 400. While we look to be comfortably in the middle of the range, we’ll take our new number with gratitude.

20160329_120649This improvement allows us to continue in a way that we thought was yet another year in the future. Rich has been having his childhood vaccines re-administered for the past year. Stem cell transplants reset the body and many of the titers for childhood diseases are no longer there. On a carefully timed schedule, he’s had his HiB, Polio, Diphtheria, Tetanus and a few different pneumonia injections. Live vaccines were not on our radar. His immune system would not allow us to have those which include mumps, measles and rubella. With the latest outbreaks of these diseases due to the anti-vaxx contingent, it’s been nerve-wracking. The herd protection that comes with a large percentage of the population being inoculated has been lost. No longer are those who are too young for vaccines or those whose health precludes them protected. We’ve been lucky to avoid them. The results could have been devastating.

We are told now that in a few days Rich will receive his MMR shot… a live vaccine. This milestone is one to celebrate… the numbers are lining up the way that they should. So carefully have the live vaccine administrations of our grandsons been timed with our family visits as per our team’s instructions. No longer will this be a concern. While platelet numbers are still low, while immunoglobulin counts are nudging but not quite in the normal range, we can have a little breathing room. We have gone a full year without a hospitalization. The red card that gains quick admittance to the ER and takes us straight to a private room has not been used in over twelve months. Asthma and bronchitis have still been with us, but with less devastating effect.

We’re blessed.

Blood.

The new life Rich has been given has come from his own blood. The stem cells were his own, harvested through apheresis over the course of two days. That science has been able to define these procedures to break down and then renew the body is a gift. That it comes from one’s own body is a miracle. An anonymous quote says “If power is defined as the ability to do anything and create anything, then the stem cell is the most powerful ‘known’ life force.” We are made of that power. That power flows through us all every second of every minute of every day. We are composed of approximately 125 TRILLION cells. With that kind of power within us, what is not possible?

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.

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.