Tag: test

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!

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.

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As 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.

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And 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.

Longest. Ride. Ever.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Renewal.