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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!

Now is the Winter of Our Discontent

The winter of 2017/2018 has welcomed a number of storms…. From arctic blasts to bomb cyclones, from nor’easters to those unnamed wind and weather events that took us by surprise. On Long Island, our weather truly does rely on which way the wind blows. The jet stream, gulf stream, and offshore weather patterns dictate what will fall where and when. And if!

We too are finding ourselves unexpectedly being tossed from one infection to another. In many ways, there is no pattern beyond chills and fevers, wheezing and coughing. And always, always the sly announcement; the stumble. The when and why of them is a mystery… a mystery that we need to unravel and eliminate the cause.

Back again are added nebulizing protocols, cough meds, antibiotics and, of course, our beneficial bane, prednisone. What started as an “oh, we’ve just been so busy with the holidays so of course he’s got a little something going on” morphed into, “what the hell, didn’t we just finish with this?”

And so the cycle has been for the last three months. A very short period of feeling better followed by a sudden onset of chills, odd temperatures and horrible breathing. A test… pneumonia; bacterial. Next time, a virus. One lung lobe. The other. Random.

Deciding to get to the bottom of this, tired of seeing the pulmonologist every couple of weeks, we make appointments with all the key gurus: stem cell, pulmo, cardio, immuno. And they in turn, will order tests. The middle to end of March is going to be when we look this head on, put together the puzzle pieces and solve this mystery.

Until the mystery comes and hits us head on before we are ready. We found ourselves yesterday in the ER. Our at-home vitals showed a low O2 level of 79. Temp 94. And shaking chills are all but rattling Rich’s teeth. For the first time in over a year, we flash our red card that fast tracks us to a room in the ER. Unlike the more laid-back evaluations when we’ve come to Emergency in times prior, Rich is immediately surrounded by doctors, nurses, interns, residents, specialists galore… everyone seems to converge on this one room and this one man. Numbers and differential diagnoses fly around the room. Temp begins to rise. Alarm fills the room when his temp is 104.3 as determined by a back-door temp taking. Not Rich’s most comfortable moment. He’s hooked up to supplemental oxygen with a face mask only for it to be swapped out for a BPap for added support as he starts to de-sat. The noise is deafening but he begins to pink up.

Tests… CT scan, x rays, sonograms of the lungs… and at my request, his heart… bloodwork, more bloodwork, nasal swabs. Vitals, always vitals. A few prove informative. Coronavirus… the common cold. And, yes, another pneumonia. Hit with a number of strong antibiotics, prednisone, fluids, oxygen, and two tylenol. Rich starts to stabilize. The long watch begins.

A theory, known to us, is that the repeated, long, and high doses of prednisone, that drug that allows Rich to breathe, has also compromised his immune system and making it impossible to avoid getting a severe reaction to whatever slight bug comes our way. This idea circles through the staff.

Ultimately, we find ourselves now settled in for the night. We are back on the floor where we spent so much time four years ago. The Monti Pavillion’s Leukemia and Lymphoma ward. Down the hall from our room is the door that took us to another door, that took us to the little room in the little hallway where our patient accepted and regrew his own stem cells. Four weeks in the room no larger than the cabins on the Amtrak trains that we love so much. Two rooms from where we sleep tonight is where we spent an overnight for chemo, Rich’s incessant hiccups sounding more and more like a walrus. Around the corner is the room where a post-transplant infection found us. There are changes, but there are also familiar faces and a type of comfort to have the care we have come to know. Lying side by side… me in a vinyl recliner, Rich in his bed, the soft susurrus of the machines keeping track of our patient. Support. The history of our journey through cancer is all here. Reminders of our path surround us. We have come full circle.

When the sun rises today we will meet with our team and perhaps begin the process of taking this mystery apart. The mystery of how to reach our goals, move forward and glory in living. We’ve made plans. Enough.

As Camus is said to have written “In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”

Let the pushing begin! We are ready for the invincible summer indeed.

To Be Like A Lotus

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And for that reason we continually celebrate.

Rebirth.

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

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

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

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

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

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

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

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

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

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

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

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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.

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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