/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.

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At 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.

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This 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.

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

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

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

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

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

I Sing the Body Electric

Walt Whitman wrote in his poem:

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

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

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

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

It’s always seemed fitting for Rich.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

350 Degrees of Kevin Bacon

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

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

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

And then one very, very odd event.

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

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

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

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

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

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

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

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

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

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

Live Long and Prosper

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

To reach for the stars.

To Live Long and Prosper.

Longest. Ride. Ever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Renewal.