Bringing the touch of health and gladness

On Facebook there is a group of scouters that have wonderful memories of a special Boy Scout camp called Treasure Island. Truly a set of two small islands, situated on the Delaware River, it is indeed a treasure that lives in the hearts of anyone who has camped there. As the home of the Order of the Arrow and amongst the oldest of the scout camps, it was always well steeped in the traditions of summer camps. The dining hall the most quintessential we’ve ever been in. On the wall there was a brass marker showing the height of the water level during a flood. We first went there as leaders from Carle Place Troop 305 in the summer of 2004. Rich had just completed six cycles of RCHOP…. our experience with cancer our first time around. He had mourned during that time the trips and events he was unable as Scoutmaster to attend. We were thrilled to once again be sleeping out of doors. This camp revitalized Rich and confirmed the healing taking place.

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2004 TI – Our Troop retiring the colors

TI abandoned. Too many times has the Delaware risen to flood the buildings and grounds. The financial decision by the council was to close it down. Also found on this fb page if you search back, are photos of times past… a camp filled with boys from all over the country, counselors from all over the world. But lately and sadly, the true present. Abandoned.

This past weekend, a group of scouters made their way to TI. The new series of photos being posted are now of the result of a weekend of what the OA calls “Cheerful Service.” One by one, the buildings are being cleaned of the detritus of what was left behind and what nature brought in. Trails are being cleared. A rebirth.

His numbers are all improving, and like TI, Rich is once again being reborn. The swan catheter in his neck is removed. IV fluids are stopped. All meds are by mouth. We’re moved to the step-down unit. We walk the halls, each lap trying for better speed.

Like TI, we’re ready to be what we once were; perhaps with a few slight changes. There is always a time in the hospital when everything is done that can be done. You’re too well to be there any longer. Everyone admits you look great. Your numbers are great. But always doctors prefer that one more day to make sure, to be certain. You fight against it. An internal switch is flipped and it’s time to go home. You’re no longer content to be here. The next few hours will confirm for us which way the doctors will decide.

We have been walking the halls, proving our fitness. We find that may have become a problem. Rich challenges himself to walk a quick pace. He does well and his breathing keeps up with him. The walking does raise his heart rate… will this be problematic for our release? The ups and downs and questions continue. A new med was added last night. We hope the monitoring this morning will be enough. Before we can get ourselves nervous, the nurse stops to ask about inhalers and nebulizers. They still appear in the computer but the truth is, Rich hasn’t used them since his first full day in the hospital. These are now in our past. We need to remember how many answers we’ve gotten and much improvement has been had since we were admitted here… in truth since this past March. The final piece of the four-year puzzle of continued health issues seems to be in place now. And that is something to celebrate. Adventures await!

To get to TI itself was an adventure. Along a roadside was a small clearing with a sign announcing the camp. All our gear would need to be humped down the embankment’s steps. There we’d load it, and ourselves, into the waiting flat bottom barge boats that would take us to the island. Once across, we would hump ourselves and our gear up to our home for the next week. Magical from start to finish.

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2007 Barge to TI

In 2007, after another flood, our troop spent a week again at TI. Then it was a mere shell of its former self. The following year was the final summer camp season. The property has now been sold and will be turned into a family camp. Scout volunteers work to keep the buildings in a condition that may allow them to be used once again. One day we hope to cross that river in those flat bottom barges as we did before and enjoy its new incarnation.

Of the TI camp song, our favorite verse was the second:

We have known the woods that grace thee,
Trace thy meadows o’er.
Learned the flowers that bloom upon thee,
Watched the birds that soar.
Often have thy waters blessed us,
Off the sun’s bright smile,
Brought the touch of health and gladness,
Dear Ole Treasure Isle

But for now, in a little more than a month, we expect Rich to pack light and pack smart and travel upstate to spend a few days Cub Scout camping with our oldest grandson. There won’t be the uniqueness of a camp straddling two states in the middle of a river, but it will still be magical.

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2017 Cub Scout Camp

 

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

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

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

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

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

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

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

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

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

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

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

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

Adding Insult to Injury

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

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

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

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

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

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

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

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

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

Rich: Nope

Dr Kz: Bastard.

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

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

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

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

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

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

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

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

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

Well heck, we’re blessed!