May 12, 2017
Having allowed for plenty of prep time to get to our 8:30AM appointment at Dana Farber this past Wed, 5/10, an overdue meeting in our minds, John was ready to go, clean and sparkly by 7AM.
Up until then, we’d had five wild days at home since his return on Friday, 5/5, from Spaulding Rehab, North End, where he had been sent after two “too long” weeks on the Neurology floor at Brigham & Women’s Hospital. While he’d initially progressed toward his PT goals over the course of the first week and a half of a three week rehabilitation plan at this old facility, his gains had been lost midway through as he lost his ability to walk with a walker. Our eagerness to get him home had carried us through his first days back. But, waking with shoulder and arm pain every morning and managing that with a combination of tylenol, lidocaine patches, and, too often, oxycodone, he was unable to do much of anything for himself. While he would have relatively pain-free periods during the day, he was suffering terribly. To be immobile is torturous.
After a couple of long days of immersion in total care, including the challenging, near olympic, sometimes scary exercise of transferring John’s 6’3″, 205lb frame from wheelchair to bed, etc., we had fallen into a routine. We realized, though, that this all-consuming state of existence would require some modification if we were to continue successfully.
John had lost his fine and much of his gross motor skills. He was calling his right hand “my claw”. To turn over in bed or scootch forward in his recliner made him short of breath. Our bodies were tense, our back muscles strained. The physical effect was exacerbated by the emotional/psychological impact of our predicament and the understanding that the folks in the medical world had, once again, left us to our own devices. When the day’s primary catalyst in your day is avoiding a fall, you know you are in trouble. When you, the primary caregiver, repeatedly wake up in the morning with the same knot in your stomach you had when you collapsed into bed the night before, it’s time for a better plan. At this rate, in pretty short order, I would not be much help to my John going forward.
Against this stressful backdrop and months of accumulating frustration and discontent with our globe-trotting neurology oncologist’s unacceptable unavailability, especially during some critical junctures, this morning’s appointment with Dr. WhereAreYou would be pivotal. But first, how were we to get John into the van? Until now, he’d been able to use the walker to pivot at the van door and, with two of us (with some very basic PT training) strategically grasping his indispensable gait belt, plop down into the passenger seat.
After a futile phone search earlier in the week for a wheelchair transport service, we took the advice of John’s OT. Incredulous at first, I called our local fire station, settling on what seemed an out-of-the-box solution! Turns out, the bulk of what firemen do involves hauling those in need of transfer to their cars. Thanks to the four fully outfitted, good natured firemen who rolled down Highland Ave. at 7:30AM in their shiny fire truck, siren blaring, John was helped into our van. Julia drove us off toward Dana Farber with John securely belted into the passenger seat, eyes closed to fend off all the street stimuli to which he was no longer accustomed.
At the other end of our rush hour ride, per pre-call plan, two cheerful, tall, burly security administrators in ties moved John into a hospital wheelchair. After getting routine blood labs done, we waited a short time before sitting down with our primary oncologist. Her thinking was, given the length of his struggle with this increasingly debilitating condition, the cause is not likely to be her original diagnosis, chemotoxicity! With no headaches, etc., it must be something else. Chemotoxicity’s damaging effects would not have lasted this long after his last chemo treatment (3/13/17). And, as we’ve wondered for weeks, how is it possible, if the toxicity should be decreasing with time, that damage to nerves would be accelerating and causing him to become even worse?
After John so articulately offered, “Doctor, I have felt abandoned. We need fresh eyes on my deteriorating condition if we are going to find answers. I have been thinking about getting a second opinion. I would like to go to MGH. She replied, “I have been thinking the same thing.” Olivia, always straight forward, “Will we be able to come back if we need to?” Taking that as the set-up, Julia added, “Doctor, it’s not that we are breaking up. We just need some time.” That certainly served to break the tension in the room.
We left Dana Farber with his primary oncologist’s encouragement, but not until she proved her lack of understanding of John’s present condition, her lack of ability, in this case, to stand in someone else’s hospital socks. She suggested we hold off, wait to take her nearly obtained appointment two days hence with a neuro muscular physician (she’d promised us five weeks ago!). It was clear that she had no real feel for John’s reality, the lack of practicality of trying to take him, in this dire state of near paralysis, home again and then, out on Friday to another appointment. It was so clear to us that there was no way he could return home without medical attention NOW!!!
May 10, 2017
In our Dana Farber to MGH transition immersion today, with its lunchtime not-just-for-John comfort stop at Tasty Burger on Brookline Ave, Julia drove our little gang of medical refugees back down Storrow Drive in search of answers that might rescue us from our living hell. Each of us, a little numb from the talk of leaving that turned into action, carries the story. The randomness of John’s battle to be healthy again, all his long-suffering, and the days and nights of agony set against this gorgeous spring day grabbed me. Fighting the inclination to just wail out loud, for obvious reasons, I settled for a controlled welling-up behind sunglasses. Partially through tired, teary eyes, I was taking in the stunning contrast between our present paralyzing predicament and the beautiful humming day through which we were flying. Passing Back Bay Brownstone and budding dogwoods under that blue sky while other people, lucky ducks, enjoyed just another day, I felt the loss of the living that has always been ours and all that has dropped out of reach, now and for foreseeable future. I was profoundly sad – mostly at the thought of John’s awful suffering and endurance, partly because I had had only four or five hours of sleep each of the past several nights and the pain in my heart has to get out somehow, now and again.
John has just been registered in the ER at MGH. Entering yet another medical world this afternoon, we have again found direction in the neuro search for the culprit. Here since noon, I am sitting in empty ER exam room, waiting for John to be rolled back from his MRI, one of many since all this began. Best bit, all his online network cancer history including med records, doc notes, and tests, etc., are available and being referred to vigorously.
He’ll be admitted as soon as a room on the neurology floor opens up. Good thing as, despite the likely battle ahead, he is very glad to have new eyes on it. I suppose our tolerance for deep worry has gone up with all the practice we’ve had. We are all relieved to have been taken in at US NEWS & WORLD REPORTS #1 hospital! Although, such accolades can draw one into a less than perfect experience. We are telling one another to let go of the nagging thought that, had we only turned left off Storrow Drive a mile sooner than our well-worn exit for Brookline Ave., the last six weeks of John’s agony might have been avoided.
A comforting positive, the MGH room to which John finally moved from the ER late last night is private and lovely. Upon entering it, one dear visitor proposed, “Make some furniture changes in here and you’d have a room at the Marriott!” He has his own bathroom & shower, etc., and a window couch under a tall wide wall of windows! To complement this patient-centered physical environment is the most significant piece, every staff member we have met is a top-notch professional. John would marvel at his good fortune, especially impressed with a care plan that no facility so far has offered, one that includes daily baths!
May 11, 2017
Today, Thursday, only a few hours before the weekly mass would be starting at my school, another day, holds hope! Up and at ’em! I have a plan for the day and we are on the march again!!! But, my enthusiasm is momentarily tempered as I remind myself of a current reality – last night’s MRI & CT scan results are due back.
And then, the news. In less than 24 hrs, MGH had John’s test results and all too good a reason for his months of steady decline. Contrary to our Dana Farber oncologist’s read of an MRI six weeks ago that showed the “lighting up” at the base of John’s spine, what appeared to her to merely be inflammation, IS cancer! We were incredulous to hear this and immediately did a hard swallow of the shock of knowing that the suffering and debilitation since that time had been preventable! Whatever progress the disease enjoyed from early March (MRI 3/6, LP 3/13) until now might have been avoided? The immobility that spiraled down to near paralysis was not the result of our doctor’s diagnosis, chemotoxicity, nor some other mystery causation. But rather, it is the direct result of the very cancer John’s attending BW neurology team diagnosed with that second critical 4/3 MRI, information shared with our oncologist as it became available. I report this with both some acknowledgement of the challenges doctors face in the reading of these test images, in all due respect, and a certain amount of rage!
While such a diagnosis is never good news, it gives John and us hope as we now, at least, know with what we are dealing. He is being very well attended to in the posh setting of a new MGH facility. Because he does not have chemotoxicity, he can be treated. Won’t think about theses last six weeks of his agony, the nearly unspeakable setback, and what better use of his/our precious time the oncologist at Dana Farber might have made. Our short-term hope is that by eliminating these cancer cells sitting on nerve roots, the chemo will relieve nerves, release the pressure of cancer cells upon them, free them to regain their messaging powers, and bring his legs back beneath him!
May 16, 2017
Having had a few days of MGH nurses’ evaluation and prep, chemo began at midnight Sunday, 5/14. At the same hour last night, Monday, “the flushing-out” of the powerful methotrexate began. Beginning with that drug’s level of 300, John’s body expelled enough to bring that down to 3 by today, Tuesday, 5/16. When it gets to .2, he can leave for rehab. That’s the plan, although it is difficult for John to push aside his own well-deserved plan to go home. He desperately needs the intense conditioning at Spaulding Rehab again.
Then, he goes back to MGH for chemo, round two, another 4-5 day proposition. If, by then, he will have regained enough strength physically, maybe, after that treatment, he can come home to continue progressing there under the guidance of our terrific Visiting Nurses PT and OT. That would be dreamy!
The first goal is to eliminate the cancer pressing havoc on his nerve roots and thus holding him captive physically. Then, that accomplished and John standing and walking, his MGH med team will help us define the next goal and move toward it.
Thank you all for your love, prayers, and all your tremendous support! They continue to lighten our load.
~ appreciatively, Sheila
May 16, 2017