“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!

How Do You Spell Love?

The sound of laughter fills the house as the grandkids tumble into Rich’s lap. It was not too long ago that one small step by the littlest of toes on Rich’s feet would have had him scream in agony. Now, he’s full of smiles as they clamber over his feet and up his legs to get his attention. The impossible has become our new reality.

Our goal these past six months has been to try and resolve the neuropathy that has plagued Rich as he went through chemo. Instead of going away as it did the decade before, its intensity increased. Numbness spread. Spikes of pain would have him in tears. Spikes that were at times unremitting. And so we began with the Cymbalta which gave us a fifty percent reduction in the neuropathy but didn’t do much for the spiking pains. We then added medical marijuana; visiting those eerie men in suits to get the legal prescription filled every month. The relief was now at seventy five percent.

But those spikes continued. We were given methadone but were hesitant to use it as the directions seemed to indicate they were not an “as needed” medication. We held off. In September we visited our Ketamine group. At first we balked at the idea of this protocol. The drug is also known on the streets as Special K, the date rape drug, and is also used in veterinary medicine for anesthetizing horses. Horses! It makes you think twice.

20170612_121430Weighing our options, we decide to give it a try. Our hope then and now is that it would allow us to wean off the other meds and lower Rich’s dependence on prescriptions for relief. And so, we began. Unlike so many other infusions, Rich is alone in the treatment room; I’m not allowed to stay. The idea is to keep him quiet and still. With possible side effects, all variables are removed. No music, no reading. Low lights, warm blankets and a slew of leads checking his vitals sticky taped to him everywhere. He is under constant monitoring. Over a period of four hours, a small dose of ketamine drips ever so slowly through the IV and into his arm. He dozes.

20170612_122133The effects of the drug as well as the relaxant they give him to forestall any hallucinatory dreams gives him rest. He’s released with warnings as if he’s had surgery. In truth, the experience is exactly the same, just without a knife. As we wait for our ride home, Rich realizes that he has no spiking pain and we share a grin. When he gets home, he sleeps.

The next day, he feels refreshed and so we see that little bit of improvement, subtle but there, and we rejoice. Week two seems to follow the same. And again, the improvement builds. We feel a sense of relief. We’re advised to continue on the Cymbalta and MMJ and we do. They are our safety net. And so we go into week three with high expectations. How foolish! The night is filled with spiking pains, unrelieved by anything but methadone. Body aches are palpable like a revenant in the room. The misery is thick as a fog that sends a shade over any hope we may have had. The internet offers us some glimmers. We read that others have experienced this as well. We wait for morning to call the ketamine group who confirm our suspicions… par for the course. They just never know the timing of when or if. As with many discomforts on this journey, a good sign is among us. We’re told Rich’s nervous system is resetting. Where previously the bed sheet against his feet would have brought agony, the ketamine is pushing back the pain volume knob and bringing it to the norm. We’re looking for his feet to just acknowledge the existence of the sheet instead of bringing on tears. A methadone tab gets Rich through the night. It is effective in random administration. We’re grateful.

There was some trepidation as we approached the fourth infusion. Neuropathy was now so minimal as to be off our radar. Gone were the pins and needles and the burning pain. The frequency of the spiking pains and their intensity diminished more and more each day. As if in a final farewell, a cluster of weather affecting barometric pressure brought on a flurry of spikes that were concentrated in one spot. Agony! A single Methadone tab was once more brought into the mix. The tide has turned. To our delight, it was as if a switch had indeed been flicked and the improvements began to come faster and faster.

Now, after the last of the infusions, week five began the miracles. Feeling began to come back into Rich’s feet. Between his toes is still numb, but for the first time in a very long time, he can feel himself wiggle his toes. And oh! The texture of socks! Everything but those spiking pains…. They don’t register. The have become a mere blip. There is a confidence in Rich’s step. His pace has improved. His cane only comes into use when tired or vertigo hits. He delights in the sensation in his toes. We’ve been told we can expect three to six months of relief. Rather than count the days, we head off to celebrate. One of Rich’s goals expressed when he was first diagnosed has been to visit Colonial Williamsburg.

15000741_10153501587557824_2703793561621062239_oSo for our anniversary in November, shortly after the last infusion, we take our Amtrak train and spend an extended weekend sleeping, eating and roaming in nothing but historic buildings. When the tiredness hits, we only have to look out through the old wavy glass pane of our room where once Martha Washington’s family lived to watch the fife and drum corps make its way down the street. To see groups wandering by lantern light. And when rested, to step out our door and cross the cobbled streets to the nearby tavern for a few small plates and to raise a glass to the musicians performing. As with all our travel, we are renewed.

 

At this point, now January, we are now ending our third month since the ketamine treatments ended. After my brother’s death, we experienced setbacks. Bronchitis due to the crowds of the wake and funeral. And again bronchitis following the traditional Greek forty day memorial. Germs seemed to find Rich wherever we went.

We were comforted by the knowledge that a year prior these infections would have manifested as pneumonia and required hospitalization. But more troubling still was the recurrence of spiking pains. Has our reprieve ended so soon? As is our wont, we looked at the data. Stress seemed to have brought these pains back into our lives. Each time that spiking pain manifested itself, it was during times of either stress, such as the wake and funeral, or, a change in routine as it would be with the kids home and the regular day to day tasks were thrown to the wind. Even in anticipation of an event that may prove to be too much.

We’ve discussed biofeedback with our pain management gurus and they are looking into where we should go. In the meantime, we find that just the discussion of the possibility of it being stress-induced, however subconsciously, has made a significant difference. The mind/body connection is at work. That Rich is open to these possibilities is a blessing.

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As our pulmo doctor once admonished Rich, “When you are well is up to you.”

And so, we once more got aboard Amtrak’s Lake Shore Limited and headed up to Rochester to celebrate the turning of the year for our two littlest grandsons. As the weekend comes to an end, Rich sits contentedly tired on the couch and the laughter of both man and boys is heard. Our family rejoices that those little feet that climb to sit on Poobah’s lap to demand a kiss and a snuggle have not brought pain but pleasure.

Piglet: How do you spell love? Pooh: You don’t spell it, you feel it. ~A. A. Milne

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.

The Best Medicine Ever

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

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

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

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

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

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

Surely, that has been the best medicine, ever.

Blessed.