You Can Only Come to the Morning Through the Shadows. ~ Tolkien

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The rain has ended and the night is quiet. The sound of the soft breeze in the leaves of the birch is the only accompaniment outside. Our windows are open.

We are once again sleeping in the little bedroom on the first floor. Stairs are near to impossible and small tasks leave Rich gasping. Oxygen levels are all over the place. Balance is a thing of the past. Thankfully, infections are not with us this night. But breathing is shallow, difficult, and noisy.

Rich attempts sleep in his recliner; laying flat it’s impossible to breathe. As the night moves on, the recliner isn’t working any longer. His breathing is labored. The night sounds are no longer quiet although his usual snoring doesn’t exist. Once again, doses are checked, timing discussed and more medications are considered. Days and nights are upside down. We settle into that now familiar routine. As Tolkien’s quote that gives a title to this post, we’re in the shadows.

Since Rich was discharged in March, we experienced a brief and very slight uptick and then a steady downhill trend.

We met with our specialists shortly after we left NSUH as the discharge instructions required. An additional follow-up with our immune doctor shows that Rich’s body does produce new B cells… however they don’t mature which means they do not protect him from infections as they should. They do not produce the antibodies needed. Immunotherapy is suggested since his infusions in the hospital have protected him well. But we do need to also take into consideration the side effects that concerned our stem cell guru when she discussed immunotherapy as a possibility with us in March while Rich and I strolled the hallways on 7 Monti.

As the kidneys are most affected, we’ve added a nephrologist to the specialist mix. Creatinine level has shown to be elevated throughout our journey but with some thorough research on the doctor’s part, it’s concluded that the elevated number has been for the most part stable since his stem cell transplant. Probably a new normal from the intense chemo. We have a renal ultrasound scheduled to document and confirm no other issues, but are otherwise approved for immunotherapy and ketamine treatments as long as the dosages remain as they were before.

And here we are. Most answers are as we have hoped them to be or what we expected. And yet the breathing issues remain and continue their slow but steady downward trend. Our cardiologist had advised us to see him three months post hospitalization to give what he called the insult, the injury, time to heal. In two weeks we’re scheduled to see him. But our concerns peak and we contact him to let him know where we are.

Again, we are blessed with the health team we have. They listen and understand our concerns. This doctor, our cardio guru, understood our fears four years ago when we first went to see him. Our oncologist recommended we see a cardiologist given the doses of chemo Rich had his first go-around in 2004, particularly since the MUGA scan showed some areas of abnormality that were not there in 2003 as part of that pre-chemo testing. When our guru told us in 2014 that we should consider an angiogram, we asked if we could refuse. Rich had been through so much with bone marrow biopsies and radioactive goop and port installations… the invasions to his body went on and on. At that point, to consider an allowing a catheter to be threaded from his groin to his heart was the tipping point for him. Our cardio doctor agreed it didn’t have to happen. He would get EKG records from our GP, and we’d come in for the followup tests between each cycle. We could get by that way. We were relieved.

Four years have passed and thanks to the doctor’s diligence, we’ve been able to avoid the cardio catheterization. But now it’s recommended once more. This time without hesitation we say yes. We need these answers. Our doctor explained that this will allow him to fully see the function of Rich’s heart, arteries and veins, as well as take a look at his lungs and how they are interacting with the heart. Answers. It will give us the answers he needs to diagnose any heart disease instead of the “probably” we have now. Therapy, meds and lifestyle changes will be clear. We agree. The time has come. Let’s fix this!

It has been a long week waiting for the insurance approval. On June 6th, instead of the cardio rehab we had been scheduled for, we’ll be at NSUH for the angiogram and the answers we seek. In the meantime, I watch this very odd rhythm…the rise and fall of his chest with a hiccup in between … and I know that watching is not as difficult as this breathing is to him, but it feels awfully close.

We look forward to those answers, we look forward to the solutions, we look forward to us both being able to take a deep breath and the night sounds to once more be just the night. With Rich’s snoring… ya know… normal.

Adding Insult to Injury

In the month since Rich’s hospital discharge, we’ve met again with all our specialists; this time in an outpatient setting. The appointments set up prior to our trip to the ER …set up by chance… become perfectly aligned for follow-up. One by one, each one gives us their opinion on where we are and what direction we should go.

First up is our PET/CT scan. Once more Rich is drinking radioactive goop and getting injected with a lead protected syringe that is delivered in a lead box. Biohazards galore. We’re thankful that this test has been approved. For the first fourteen years living with cancer, our insurance has never denied a single test or procedure. Then last year we were thrown for a loop… No PET scan. We were informed that, despite a peer-to-peer review with our stem cell guru, Rich was eligible for a CT scan only. The near to continuous pneumonia bouts that have been our life since the holidays four months ago is the blessing that has brought this change. It is only a few days after coming home from the latest stay in the hospital hospital that we have the PET/CT scan. It is sure to light up the lungs a bit as there is still a lingering pneumonia, but the gurus all determine that it’s ok to have the test.

We have also brought new specialists into our world. In December, we visited, at our pulmonologist’s request, an allergist/immunologist. We thought that perhaps, like his childhood vaccines, the stem cell may have reset and lost the efficacy of the allergy shots he received in the 1980’s. The test showed those shots were still doing their job. These infections were not allergy related. As an immunologist, the doctor also ran a panel to check Rich’s immunology levels. Antibodies that are known as immunoglobulin, are proteins that are used by a well-functioning immune system to ward off bacteria and viruses. You know, all those that we’ve been having difficulties with for so long. She said, in January, that Rich’s antibodies are where you would expect them to be. No worries.

But now, a week after our hospital departure, as we’re in consult once again in her office, we know from the recent hospital tests and the accompanying Immunoglobulin (IgA) he received in the hospital that his levels at the time of admittance last month were low. This latest panel she takes will help us determine Rich’s reaction to the recent IgA infusion and the worth of therapy. IgA, is, not coincidentally, the antibodies that help protect the body’s mucosa. It’s no wonder that infections manifest in the lungs. She suggests we wait three months and see her again to check the IgA levels again. The infusions as therapy might be an option. She says “You are a mystery!”

Directly from the immunologist, we go to see our pulmonologist. We first were introduced to this practice in the summer of 2014… four years ago. Rich was in the middle of his pre-transplant chemo and we found ourselves in the hospital with a pneumonia diagnosis. Dr Kz introduced himself to us and over the course of our journey, we’ve welcomed his advice as he is not one to limit his concerns regarding a patient’s health to his specialty. He looks at the overall patient and can see gains and losses when he walks into the room.

One of our favorite memories of him came about a year after the transplant… 2015 being the year of pulmonology. It seemed like we were in the hospital every month with some kind of lung infection… PCP, RSV , hMPV as well as the generic viral, fungal, or bacterial pneumonias and infections. Rich was not progressing well. Our Dr Kz, at one point in a hospitalization, advised to be patient. In a rather long discourse, he advised sticking with the Robitussin instead of opting for the cough med with codeine. He admonished us that the codeine would slow the lungs from clearing. “Use codeine only when the pain is unbearable.” He explained the why of it in intense detail. We agreed.

Trying to stick to his plan, we found we had to resort to codeine in the middle of the night. Knowing we would have to wait for the pharmacy to fill the prescription and that at night could take a significant time, Rich asked me to give him a dose of the meds from my bag. Seeing the pain in his face as he coughed, I gave him the dose. His conscience must have been on duty… no sooner did I get into my recliner than a team rushed into our room. Apparently, his guilt manifested as wonky readings on all the leads sticky taped to his body!

Come morning, the codeine unrecorded, Dr Kz comes checks Rich and finds him much improved. He credits the Robitussin protocol and launches once again into his speech on its benefits and the why of it.

Finally at the end, he says to Rich, “You only had Robitussin right?”

Rich: Nope

Dr Kz: Bastard.

It had been two years since we had seen him… he had sprung us from the ER when Rich was about to be admitted for the flu. Now he walked into Rich’s hospital room a month ago, looked at Rich with a smile and shook his head. “You look better than I expected from reading the ER reports. I don’t understand you!”

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The directness of this doctor gives us strength. His compassion and willingness to work with us is a common trait with his office partner Dr J-R. She tells us, when we see here, that Dr Kz joked with her, “I gave him to you two years ago. What did you do to him?!”
I mention to her that he was supportive of us going home as soon as advisable but, when it came time for us to leave, he seemed skeptical. “Dr Kz was scared with this admittance. He wanted you home, but at the same time, the reports from the ER and Rich’s numbers were extreme. He hoped we were all making the right decision for you to leave, to come off the vancomycin.” The first few days, we wondered if it was the right decision, too!

She also advises that, as we know she suspected, this appears to be infection by way of cardiac issues. Congestive Heart Failure. Of all the reasons for the continual infections, she says this would be the most treatable and could be considered curable. Her explanation is that the congestion… brought on by his heart issues which were in turn brought on by chemo… builds up and it is then that the fluid builds up in amd around his lungs where an opportunistic bug makes its home. The fluid also bloats Rich’s belly which restricts the amount of room his lungs have to take a deep breath. Treat the CHF and the rest will take care of itself. Lasix as needed is prescribed.

Part of that is in direct contradiction to the immunologist, but it makes us think perhaps this is a combined issue.

Another week goes by and we’re meeting up with the cardiologist. While we were in the hospital, the ejection fraction of Rich’s heart was further depressed… lower than his average. Both doctors seen last week brought up that problem, so we’re anxious to see his take on things. We’re first scheduled for an echocardiogram followed by an EKG. Surprisingly, our consult is short. The tests indicate Rich’s heart function is indeed not exactly status quo to where it has been throughout this journey, but is what he would expect given the recent events. He tells us that he wants to reconvene after three months, that Rich’s heart needs to “recover from this insult.” There has been an injury and it needs to resolve. We ask to be more proactive, we ask that Rich be prescribed cardiac rehab. Approved. Continue with the Lasix as needed, he says. Further tweaking of meds will be reviewed when we meet again. We always have to keep his liver and kidney function, particularly with CHF, in mind. Patience.

One week more and we see our stem cell guru. By now we have as many answers as we could have wished for. Blood work is taken and vitals checked. As we have been told by each of the doctors during these weeks, the PET scan not only shows no evidence of disease but a few spots that everyone was watching for inflammation have resolved. We breathe a sigh of relief. So many symptoms this year are part of the list of NHL. We’re glad to have a recurrance off our list of concerns.

At this point in our journey, this is the shortest stem cell consult of all. In many ways, we have moved forward into the realm of other specialists for the issues chemo have brought. We will meet for only for 6-month follow-ups and testing. The consult ends with hugs and a reminder of the Celebration of Life dinner. It will be good to see our fellow HSCT patients and the angels in scrubs who guided us through an incredible month in August of 2014 and celebrate living our new lives.

With one month down from our date in the ER, we have two more to go to see where we stand. But we’ve been contacted by the rehab group and this next month will see the start of evaluation and rehabilitation with a staff that has experience and certification for working with cardiac and pulmonary patients.

The recovery from this latest insult, this injury, this one worse than any before, has been understandably slow. Rich says it feels like he’s taken a jump back three years. Pneumonia in and of itself is not a quick bounce-back. Rich’s condition in the ER was not like any ER admittance before. Three years ago, Rich had his doubts about coming through one of his infection hospitalizations. This time it was my turn to have my doubts while he was in the ER. We’re blessed that deep down is a strength that pulls him through. We’re blessed with our family and our friends who are family to us that support us and are with us along the way and especially there when we need them most. We’re blessed that those who partner with us in the health care system are indeed partners and listen and voice their truth and guide us well.

Well heck, we’re blessed!

“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.