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

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

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

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

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

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

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

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

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

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

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

/bləd/

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

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

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

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

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

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

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

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

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

We’re blessed.

Blood.

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

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.

15974896_10153684144562824_6993301252525878555_o

 

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

An Eternal Light

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

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

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

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

Rich and I grew up in that same neighborhood together.

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

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

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

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

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

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

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

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

billy-miller-portrait-credit-Eilon-Paz-2016-billboard-1548

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

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

What’s-a matta you?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Confidence.

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

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

Deportation and Unassimilation

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

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

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

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

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

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

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

We are nearing full circle.

Our box is slowly emptying out.

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

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

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