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.
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.