My daily routine is centered around getting on the T in Davis Sq. to go to MGH. Yesterday, I had to concentrate to resist my habit of standing, pulling my backpack filled with clean T-shirts, socks, and a collection of Things-with-which-To-Do up over my bulky winter coat and onto my back as the train approached “my stop”, Charles/MGH. Finally, in getting some few mundane tasks done each day, I would remain on the train and get off at Downtown Crossing. Finding the Charlie Card Store, I completed a rite of passage and collected my Senior Discount Charlie Card! A sweet 65th birthday gift from the MTA: $1.10 for trains, .85 for a bus, and, half-price for the commuter rail. While for some long while I’d been mostly driving into the hospital and parking, indulgently, in the Fruit St. garage, I’d reassessed that unnecessary, accumulating expenditure, smartened up, and started using the red line. If I’d saved some dollars in that adjustment for daily trips, the built-in exercise was an added benefit. What’s with all the benefits, these days?
Incidentally, I’d asked by phone when I prepped for this jaunt if I would be able, with no added expense, to get back on the train at Downtown Crossing to return to MGH. “Yes, but you’ll have to pay again.” Really? When a senior makes the journey to acquire their T-pass, the roundtrip ride is not economically seamless? So, fare enough, I used my temporary senior pass to get back on the red line and head toward John, my arrival there only slightly delayed. Every time I set out for his room at the hospital, I feel eager to get there, to be with him, to remind him in the doing that this is not a solo sport, that we are a team, that he has an endless credit with me, and I cannot begin to repay all that he has given to me.
Can’t wait for this pass featuring my bunned image, one framed by my cumbersome winter coat, caught in this moment of my official transition to senior, to arrive in the promised 7-10 business days. Who knows what the state of our lives will be in that short time. For now, schlepping my heavy backpack, I sprinted down the stairs to catch the train thundering toward the platform, appreciating my health, the strength sustaining me through our great challenge, the youth still in me, and the multiple responsibilities and their attendant tasks that keep me preoccupied and moving through most of many days without crumbling at the prospect of losing John. I hold on tightly to our hope and that of those who love us, those amazing, generous souls who understand their significance in our lives, who give of themselves to keep us in touch with the beautiful life through which we have come to be here, to help get us to each tomorrow, one stop at a time. Each of them has taught me so much about the art of support, the simple goodness of it, the sheer value of investing in one another, and the bond that it enables.
John continues to be extremely weak. We were heartened this past Monday, two weeks since he’d arrived home from that first RICE treatment, to hear, “John’s neutrophil count has begun to move up.” We’d been waiting trepidatiously for any sign of that improvement. I had found myself talking to those baby white cells, imploring them to move out into the bloodstream and wage battle against whatever infection it is that has John in its grip. Last night, John’s nurse answered my daily inquiry with, “They were at .2, had moved to .3 Tues., and now, Wed. PM, they are at .560!” This is beyond the 500 mark to which his med team has been looking. We are relieved. Now, to detect in his clinical presentation that good increase in his system’s arsenal.
Per our plan, one born out of a fairly new worry, Julia was in Tuesday around lunch time to make sure her dad got midday nourishment. His appetite has been very poor over these past couple of weeks. While chemo-induced nausea has been thankfully, only intermittent, food has suddenly held little appeal, understandably. She’ll be there again today before she goes to work. Tag feeding! I fed him 6-7 spoonfuls of chicken pot pie last evening and he had half of the steak tip dinner he’d ordered for dinner on Tuesday. Both John’s daughters call him regularly and he lights up with what have recently become, for him, exchanges weighted on the listening end as they catch him up on their days, knowingly limiting their inquiries so as to exact a minimum of his depleted energy.
John is still receiving IV antibiotics, fluids as needed, etc.. Before I go in today, I plan to make a call to palliative care. An old neighbor friend of mine who works in pharmaceuticals and knows hospital culture on a level to which I am not privy, pointed something quite valuable out to me. The doctors there are of a mind to do everything they can possibly do, a seemingly commendable response to John’s condition that we have appreciated. This modus operandi, though, one that comes out of privileged access to the latest research, testing, assessments, procedures, and equipment, etc., sometimes promotes mostly headlong use. This feeds right into our hope for the best, most excellent care for our John. But, without enough consideration of the individual patient’s condition, vulnerability, and needs, doctors, so bent on application, can miss the overview, the piece that could make a critical difference in their charge’s survival!
In questioning the necessity of the particularly invasive bronchoscopy that was ordered on Mon. for Tues. morning, Julia, Olivia, and John learned that the success rate of this procedure in detecting the source of patients’ ailments was minimal. Yes, it would be helpful to find the cause of John’s intermittent fevers. But not likely and at what risk? My description of listening to John’s thoughtful refusal to have this risky procedure done on his already overly taxed body was just the example my friend needed to make his point.
Just because it’s available is not the best indicator for its use. The whole patient needs to be looked at whenever these decisions are made. Sticking a tube down the throat of someone as, long-suffering, compromised, and embattled as John might be catastrophic, never mind uncomfortable, given some mistake, one slip of the thing or the conveyance of one bacterial cell. I appreciated my friend’s guidance. He also reminded me, doctors have to cover themselves against malpractice and, for their patients, avoid insurance denials.
My understanding now, one based on both his affirmation and input from several voices, is that John would benefit greatly from a palliative care team. The connotation that the word “palliative” carries belies the reality that it is not necessarily only for the dying. My understanding is that the main focus of a team offering this care is to advocate within the medical world for the whole person in an effort to help the individual to be as supported, well-cared for, comfortable, pain-free, and as safe as possible throughout his arduous ordeal. Why does it sometimes take so long to gain understanding?
Had we palliative care in place late Monday night, I would not have been the one approaching John’s nurse to inform her that John did not want the scheduled bronchoscopy the following morning. I would not have felt the need to push back when she replied, a little annoyed at this prospect of a disruption in the schedule by a surly wife, “Well. I will have to consult with his team.” Oh, brother, that’s not sounding very congenial. My reply at this late hour, given my unwillingness to allow John’s rest and peace to be jeopardized by any demand on him to do battle later on with this woman over a glass of water, “He will not have that procedure done at all or until he and I have a better understanding of the need for it. He will want water tonight, the NPO (Latin? nothing to eat/drink after midnight) should be dropped, and he should get it without any mention of this issue.” This was an unusual encounter as every other nurse whose service we have enjoyed has not sat atop a high horse! Who knows, maybe she is suffering a crisis in her life or her shoes are too tight. By living long enough, I’ve earned my discount T pass and I know a thing or two about empathy. Both have made life all the easier.
Next, we ask a question tempered by the hopefully distant or better, non-existent need for a consideration of life quality. How will he, all of us, accept that he should, once improved counts are established and lift him out of this weakened state, get intense daily physical therapy that only a rehab facility can provide? This is the way, hard as it is to swallow, to regain strength enough to return to MGH for a second (of THREE!!!) RICE treatment, the very stuff that knocks him down by stripping him of all his defenses. The contemplation of moving from this 2.5 week, somewhat interminable hospital stay to a shared room at Spaulding, a far less equipped and well-appointed place. There, because it’s not a medical facility and a few less-than-inspired aides who are caught in what is likely a relatively low income bracket, patients are at the mercy of these less attentive individuals. Even with the knowledge that it is the very professional PT program that will help to bring John back up onto his feet and feeling better, the prospect of this move seems impossible at the moment. And then, all that endured, he’s to do this back-to-back imprisonment all over again a third and last time (original timing, 3/25/18) to complete this extreme plan to regain remission over the now extended, original 63 days.
And after this, provided he can climb such a challenging slope, will he be able to move into Stem Cell Transplant? Lord above, what are you thinking? As my mother would say, hands clasped and, literally, her eyes cast up toward her well-dusted ceiling, after some fear or frustration had allowed the infrequent “damn” to have slipped from her lips, almost in the same breath, “God forgive me!” But, right now, my thought is that She will understand my frustration, my incredulity, and continue to take our prayers.
This just in from the case worker at MGH: “Good news, I have retained a bed at Spaulding Rehab for today!” What? He still thinks he’s coming home! Better, no, any communication would have had us informed in advance with John given some preparation for this move? He’s not ready for that. But, okay, we will find a way. Can we change that to tomorrow rather than right now? Doctor apologized for lack of prep here. The caseworker “negotiated for a bed and admission on Friday.”
March 22, 2018
This entry is based on recent texts.
John was admitted midday – MGH Lunder, rm 886, had a port implanted (2nd time as original one was removed months ago), and is resting from all this activity. He’d been taken by ambulance from Spaulding Rehab after 1.5 week there for improved mobility. And that after being at MGH for chemo #1 for this recurrence!!! When he completes round 2 of this methotrexate regimen, he will have been away from home for 3.5 weeks.
I was with him at Spaulding this AM to collect laundry & belongings he doesn’t need for the ride to MGH. And, this evening, I found him settled in at his old MGH haunt, 8th flr of the Lunder Bldg. He sighs relief as he has formed relationships with his team here, is better cared for here, and far more “attended to” than he is at rehab facility, naturally. Caught him up on the day’s doings, had him peruse some home business issues, and admired his increased left hand strength!!! PT works! And then, a kind nurse and I shared a little care duty. This brings me back to a time before I was born. When he gets this amount of attention, multiple women caring for one man, he recognizes and comments on it as being a lovely rarity. He’s got that right.
Nearly a month later, having completed 3 rounds of methotrexate (targeting the lymphoma that’d appeared on C1 & C2, the top two vertebrae of his spine) with some degree of success, John’s enduring system was introduced to RICE by way of the newest member of his team, Dr. Hochberg (his dad developed the very popular & effective drug, Methotrexate!), a lymphoma oncologist. His priority is getting John back into remission so that he can move into a stem cell transplant, a gruelling prospect, daunting for the toll it will take, again, on his immune system. The current administration of this very powerful treatment over 63 days, in this specialist’s mind, holds the best hope of moving my guy toward transplant and the possibility of a cure.
We can hardly imagine what joy it would be to return to our old normal life together. A walk to CVS would be wildly spectacular! Doing things would be unbelievable!
NOTE: There have always been two distinct areas of disease needing each of their own specific treatments: 1) the CNS (central nervous system) lymphoma and 2) the disease impacting the rest of the body or the systemic lymphoma.
To ER last night as this tough week found him dizzy, confused, barely able to stand, and spending most of the day in his bed or recliner. At 5PM, I realized that the chills just developing (under his electric blanket?) should point me toward the thermometer! Sure enough, he had an alarmingly high temp of 103.1F! Called MGH, told his doctor, and received the directive, “Get him into the ER. They’ll be expecting you.”
He’s still in the ER this morning, waiting for a bed. Thankfully, the ER team, by administering fluids/transfusion, was able to spare him ICU by bringing his blood pressure (BP) up to a more normal level. And, having learned long ago how significantly one vital function impacts another, we watched, thankfully, as his heart rate (HR) slid back down to normal.
Last weekend’s (3/1) 1st of 3 RICE treatments had been hard on the quality of his days at home, his hard-earned mobility, and his blood counts. It was no surprise, then, with his immune system so very compromised, that infection grabbed hold of him. Maybe even a bit of pneumonia? Today will bring more info..
His appetite is good.
After nearly 18 hrs. in ER (no bed was immediately available on the Oncology floor 9), beginning with our arrival Thurs, 3/8, 8:30PM, John’s blood pressure plummeted to 52/? . The next morning, his doctor told him that he had come close to dying. Took our breath away.
John has been soldiering through fever, chills, dizziness, disorientation, and, increasingly now, loss of appetite and enduring multiple blood draws for cultures that will ID the specific bacteria causing the disastrous infection that put him here.
We were very relieved this morning to hear him sounding better, a second fever having broken. He is up, in the chair (If “sitting is the new smoking”, quite the contrary, for me, given my fear of all this lack of conditioning, it’s “the new treadmill”! Over these last week, it thrills me when I find he is not in bed!), and about to have his first meal in 24 hrs.. He had not eaten since lunch on Thurs. when, finally, he had something, a banana and an egg Fri AM in the ER.
While the first infection is likely from his “gut”, the place where each of us harbors bacteria which most of our healthy immune systems fight off every day, they’ve just ID’d a second infection, one likely gotten via his port! There is no talk of any of that initial question regarding pneumonia, a passing one based on a blurred image probably revealing John’s inability to stay perfectly still when the x-ray was being shot.
Low BP in morning each day, climbs by mid afternoon. His condition is “serious” in that :
1) chemo, as predicted, has his white cells at 100 out of a normal 500 and resulting infections take their toll;
2) he has two blood infections.
Good that both cultures eventually showed negative yesterday. Continuing to treat them, team rec’d latest culture results and he was put on a more targeted antibiotic IV last night. We are in a waiting game around a forthcoming increase in white cell count.
At start of today’s storm, feeling a bit guilty marching out over un-shoveled steps & mounting snow, I hiked out this AM for T to MGH before it got too deep to make the meeting time with consulting infectious disease doctor Olivia is home on break this week. She’s shoveling, minding the dogs, and cooking.
It turns out, John’s two blood infections owe their existence to two bacteria:
(1) e coli – likely emanating in the gut, where, with a healthy immune system, each of us can beat it back to the colon where it should be.
(2) staph – from an external source/skin?, possibly on his port (which is being considered for removal).
Antibiotics continue to flow into him. I plan to be here with John for the day as he’s so frighteningly weak. Nurses are managing his blood deficiencies/pressure fluctuations with transfusions/fluids. We are trying to be patient with expected increase in totally wiped-out white blood cells.
His current count of zero ANCs (The absolute neutrophil count, the number of white blood cells (WBCs) that are neutrophils, the warrior white cells in charge of fighting infection) has some distance to go to reach the level it should be!! Amazingly, it’s said to be doable. Nurse is telling us, “it just takes time.” Really? Julia, Olivia, and I are having a hard time believing that, given how totally taken down John has been since he came home from his 1st RICE treatment, how much decline he has experienced since, and the amount and variety of drugs flooding his precious system, this is merely a horrible chasm he must cross to get on with life. Hoping & praying she’s a good predictor!
4:30 PM, Tues.
Having helped John to sit up on the side of the bed in our Rm 922, I encouraged him to eat and get his protein (given the chemo, protein is really important for improved health). I fed him half of a big fat turkey sandwich on which, to add minimal interest, I stuck cucumbers and lettuce from his untouched salad.
By the way, the rooms at Lunder and any of the newer facilities at MGH, i.e., the Shapiro Cardiac Center, are not unlike those at the Marriott. By the looks of it, the Lunder building was designed with the whole patient in mind. A person and his/her family can find great healing value in these thoughtfully created accommodations: glass walls that offer views of some part of the Charles or the Boston skyline, roomy rooms with the added feature of a high quality fold down bed for any family member wanting to stay at her/his loved one’s side through whatever ordeal they’ve come up against.
John is again hooked up and, and this time, receiving a blood transfusion. This should make him feel better, among other good things.
Kathy Corsetti asked for an update:
John’s white cells are not yet in sight. He remains in very serious condition. Getting lots IV fluid, some transfusions of red blood cells (both boost BP), & platelets as needed. A detail not normally discussed in groups, never mind an online one, he has also had to deal with all variety of near constant meds-induced discomfort around his digestive system. In bed mostly, in chair some, but extremely weak with some nausea. His appetite, naturally, is down. Blood pressure seems more stable, but for several days, it fluctuated from very low in mornings up to more normal in latter part of day.
Because it was discovered that his port had very likely been infected with staff bacteria, it was removed yesterday. Prudently, the team is giving that wound a “holiday”, a chance to heal before installing another. But, consequently, John’s poor veins must suffer the now twice daily attempts, sometimes unsuccessful, by non-IV nurses’ lab draws.
Again, both bacterial infections, e coli from the gut & staff from the skin surface, are said to be under control. Even so, evidently, not completely, as he had an unexpected fever of 100.3F last night. It was quickly brought down. But with the port now out, John has to endure more pokes to the very overused and fatigued veins in his arms.
He’s discouraged, understandably. “It doesn’t seem like I’m making any progress.” We cheerleaders, hurt to see him hurting, acknowledge his suffering, but then nudge him back to a better place on this road.
Short visits by healthy family members and friends continue to be welcome as they boost his spirits and offer contact to those wanting/able to give him their support with their presence. Text me if you find yourself so inclined. He is expecting company tomorrow, Friday, both at lunch and, as it turns out, again around supper time. They’ll be low key visits as he is very much in a resting mode. The dear friend who’s coming toward day’s end plans to bring a book. But he may end up listening to John’s Old Time Radio, an episode or two of the original Gunsmoke.
He puts good energy into his interactions with each of you, whether in his room or on the phone. He shouldn’t, I advise him, but he remains eager to keep us all from worrying, a noble, if sometime exhausting mission. I want to tell him, “We’re worried, so forget it.” But I don’t. Still learning so many things, I can’t tell you. One of them is verbal restraint.
This just in:
Because the necessary two-week waiting period has expired since John began this RICE treatment and received a Neulasta injection (question of the hour: did that shot increase cell production?), he can now receive another drug that is also designed to grow his white cells. He will get that today. Come on, calvary white cells, get born & get going!
March 15, 2018
June 6, 2017
John enjoyed a better experience the second time around in his private room at Spaulding for the week beginning 5/22 that followed his first chemo treatment stay at MGH, 5/15-22. With so many weeks languishing in hospital beds, we have been determined to get him outside as often as possible. Once we learned we had a better chance of staying safe facing light traffic then we did struggling to push John down those ancient and uneven brick sidewalks, we began wrong-waying it down one-way streets. We wheel-chair him the few blocks along North End streets to the park. Having been cooped up for so long, Columbus Park, overlooking the harbor with its massive arched wisteria arbor, the consistently good music of one of several talented street musicians, and a wide green sprinkled with park goers, offers him open sky and water. We have been committed to making good use of this conveniently located resource on most of those dry sunny days that have popped up during this year’s long spring monsoon season!
By the time John was into his second chemo treatment at MGH, beginning 5/30, the PT/OT experience there had him pretty excited. Of course, given relativity, when you’ve been way down, any improvement takes you higher than it normally might. Up until then, he had progressed, if even incrementally, under the expertise of both Spaulding and MGH rehab efforts. But now, to find himself suspended, if mostly carried, in the sling of a Hoyer Lift and walking, of a sort, down this wide hospital hallway, he was elated! When I spoke to him later that morning, he sounded like a kid who’d just hit a home run.
On Tuesday, he had managed to travel 12 feet. By Friday he had done 100 feet! It was a relief to hear John change his attitude about delaying his homecoming and sign on, fairly whole-heartedly, to another go-round at Spaulding. He is better able, we notice with no small rejoicing, to hold a cup. The other day, when I bent over to assist in getting his legs back up onto his bed, they bypassed my helping hands and swung up on their own! He would continue to work hard to take back the strength in his arms and legs, including their ability to carry and bear weight.
John looked forward to discharge beginning this past Friday. But despite the good daily trending of his numbers to near total elimination of the chemo from his system, the reduction did not reach the required “.2” until Sunday. So, beginning his third stay, he’s been at Spaulding only since yesterday, lucky again to have, this time, a semi-private. Next Sunday, 6/11, at the end of what has become, alarmingly, ten weeks of institutionalization, we will turn back to MGH for his third treatment. But before that begins, testing will be done to see what good work these chemicals have done in eliminating the culprit. Prayers, all the time. And, added to our deepest wishes, a little more sun wouldn’t hurt either.
June 16, 2017
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. From assisting him, 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.
And not for the first time in a moment when hope has dimmed, someone invariably hands us a thoughtful gift. That sweet offering made by one of the firemen that morning pops into mind, “What time you folks going to be back later?” Well, as it turned out, not for some time. But this loving stranger had all our appreciation for his willingness to pick John up on what turned out to be only a wishful return imagined for the end of that day.
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 release the pressure upon them, freeing the nerves 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, more than understandably, for John to push aside his own well-deserved plan to go home. The very competent hospital PT and OT both encourage him to continue working with Spaulding where he’ll receive the most intense conditioning. We look to John, hoping he’ll find in each of his small progressions just how critical to his recovery this marathon has become.
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 he can come home to continue progressing here 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 your tremendous support! They continue to lighten our load.
~ appreciatively, Sheila
May 16, 2017
With blood tests, a sonogram of his liver, more blood tests, and a CT scan eventually dribbling electronically into the right hands, we had finally seen action taken on John’s serious predicament. He had had a biopsy from a lesion on his liver on Friday, 4.8.16.
Dropping him off at Mt. Auburn Hospital that day, I continued on to work, reluctantly. Through these early days, I am trying to finesse my work schedule around John’s appointments. As planned, Julia joined him for his biopsy. Thoughtful, caring communiqués from family and friends have supported our agonizing ten-day wait for a diagnosis. It had seemed a long haul between Dr Tabesh’s first suggestion that John’s disease (pre-biopsy and unconfirmed) might very well be curable lymphoma – and his actual diagnosis.
By early Monday, 4.11, ignoring the nurse’s instructions to “wait before calling in a week if you haven’t heard by then”, I put a call into Dr. Tabesh’s office. Reaching the end of classes for the day, I picked up my phone to hear the first of three biopsy takeaways, “It IS lymphoma. This is very good news!” Since it was still early on in pathology work that promised to take a week, she was able to report on just that one-third of the total info.. For now, this, a real gift in these circles and suddenly quite coveted, was plenty!
Thanking her like she’d just facilitated a rebirth, I immediately called home. “Julia, put the phone on speaker.” I said, “John, are you ready for some good news?” “What?” he asked his voice excited. “You have lymphoma!!!” There was silence as each of them made their own abrupt shift away from our living hell and back to the stuff of hope! And then, we all let out our yelps of relief and joy together, “Can you believe this?”
The tension of not knowing with what we were dealing had shaken us and our basic sense of well-being, the one that depends on health and an assumption that tomorrow will come bearing some resemblance to life as we’ve known it. It had been a living nightmare. Surely, now, we had reached the end of a most excruciatingly surreal, plunge away from all we had taken for granted for so long.
Then, I called Olivia immediately. Far away, she’d been suffering alone with her dad’s predicament without the benefit of being with us, experiencing the day-to-day of it together. Her friends helped to hold her up, but she wanted to be home. I have never enjoyed others’ relief quite so viscerally. The news heartened her and she asked about “dad’s next test” to follow that week, a bone marrow test.
Dr. Tabesh, again, like an angel with functioning wings AND a solid education, seems simply to appear wherever John is told to show up. There she is again, this time, suited up for action. Smiling cheerfully, she was holding what John later described as a highly sophisticated piece of technology that looked, in part, an awful lot like a chisel! Laying there on the “procedure table”, his fetal position the perfect expression of vulnerability, John, God bless him, in possession of neither the strongest stomach nor deepest tolerance for pain, got through a long half-hour exploration of his hip for bone marrow.
Having been given no more than a local anesthesia, he was forced to anticipate the portion of this journey that would bring Dr. Tabesh’s instrument from the surface of the bone down to the marrow. Yikes! The damn drilling would make him wince and tighten his muscles. The following week, from the tiny podium of our home speaker phone, she would congratulate him on his steadfast courage and repeat the awesome discovery that John’s bones are incredibly dense. “He has very good bones”, thank you very much, and thus, they made for a difficult passage!
John had begun to appreciate the rhythm of his doctor’s pushing and pulling, the alternating of some terrific exertion and rest, and his understanding that, if she could not penetrate to the marrow on her own steam, she would necessarily call in another physician to help. Later, when he was relieved to have survived this mining of his marrow and to have put the procedure behind him, the technician offered him juice. “Yes, I love cranberry. Thank you.” Her kindness and delivery of juice and Lorna Doone cookies, under the circumstances, renewed him tremendously. It was easily the best comfort he’d had since Dr. Tabesh reassured him with, “It’s going in, we’re making progress. A little bit more. How you doing?” She had been encouraging, providing comfort, and cheering him and herself on. He had never doubted her capable hands and, as it turned out, her strong arms. As she walked away with her hard-earned sample, he sipped sweet juice.
The initial, more frequent than expected end-of-day phone calls from Dr. Tabesh had removed much of the early, awful feeling of being in the dark. Right before the bone marrow procedure, soon after sharing the biopsy’s confirming lymphoma revelation, she reported that John’s disease was the more aggressive variety which would, in turn, be very receptive to chemo! By golly, if there is anything approaching justice in this indifferent bioworld of battling cells, this must be an example of it!
The third and longest awaited piece of info was the chromosomal one. It had indicated that John’s liver’s enzyme level, after that first short “CHOP” treatment on 4/15, was nearly back to normal! It also revealed that his bone marrow was likely free of cancer. My understanding was, though, that only the subsequent bone marrow biopsy itself could actually confirm that. Later on, we would need clarification on this issue.
Returning yesterday, Thursday, 4.21, to the fourth floor Oncology Department of Harvard Vanguard (Kenmore Sq), where a tightly scheduled regimen of chemo treatments becomes routine for cancer patients, John was very tired. The recommended daily hydration that facilitates a healthy flushing of chemicals and targeted dead cells from his system continues to make for a rest-depleting run of wakeful nights. So, eyeing a freshly made hospital bed, he was pleased to be given one of only a few private rooms for this, the final five-hour portion of his first treatment.
Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body. It is used to treat, among other things, large-cell non-Hodgkin’s lymphoma. This powerful “R”, as it is called, would be introduced gradually, particularly because it was being destructively delivered to the very innocent and startled immune system of a body that had had the bad luck of unwittingly harboring cancer cells. (Why does Vietnam fly into my mind?) The attack made on the intruders could not help but wreak havoc on their host, an otherwise healthy body.
We settled in, a lunch from home in our old cooler, the one we’ve schlepped for years on other, much more sunny adventures, and my laptop on the long hospital bed-table. John laid there, his tired eyes closed, relaxing in and out of a nap. He seemed less bothered by the possibility of a bad reaction than I was. Within the first two or so hours, we would know if his body was going to react badly, become cold or feverish, and shake. Fortunately, during the first hours of the treatment, the only apparent physical disagreement was felt in John’s toes as they grew chilled. Andrea, our kind nurse, gave kept us in those thin white blankets, fresh from what seemed an endless supply in the nurses’ warmer, in which I wrapped and rubbed his big feet. As a tiny victory against my helplessness, they warmed up.
“It could be worse,” we say around the house. But for the time and region in which we live and the advances in medical science from which we are now benefitting, we might not have had the luxury of all the ups and downs of the last several weeks. Ah, yet another fine support, the recognition of relative good fortune hidden in one hell of an awful time.
april 22, 2016
After months of enduring those relatively, mostly small assaults on his general health – a flare up in the jaw of his temporomandibular joint disorder (TMJ or TMD), the resulting pinched nerve that has left the right side of his jaw numb, a long winter bout with a persistent cough and its recent return (for which was prescribed, with a “let’s-try-this” kind of medical certainty, an asthma inhaler and an allergy pill), increasingly debilitating fatigue, and weight loss – John’s new PCP, Harvard Vanguard’s (Davis Square) Dr. Gullapalli, connected the decreasing waistline to his blood test’s elevated alkaline level and ordered an ultrasound of his liver. Thank God!
John had been home only briefly by the time his doctor read the sonogram and saw that there were multiple lesions on his liver. Dr. Gullapalli had his nurse practitioner (NP) call John back to the office to discuss this discovery. Back in the car and driving “the convenient mile” between us and Davis Sq., John wondered what he was about to learn and, quite naturally, rejected the possibility of anything nearly as dire as that which he was about to hear. He told me later that he felt badly for the NP who seemed uneasy sharing this bad news with him. Yes, he would follow her orders.
Before heading over to Mt. Auburn for the next step, the just-scheduled CAT scan, probably holding onto a little normalcy in an hour in which so much seemed to be spinning out of control, John comforted himself with a simple decision. First things first, he would stop at home to let the dogs out, poor dears. Recently, their walk schedule has been all off.
John left the building, stepping out into a beautiful, sunny, spring Friday, one like no other. April Fool’s Day, normally, for years, the day on the family calendar during which he would savor some creative time to come up with a few original pranks to pull on his girls. But on this day, his mind, his whole being, was grappling with the shock of what he had just learned. He told me later that everything around him seemed heightened in some way. There were two little girls playing as their mom looked on, a broad smile on her face. A young couple strolled by, walking hand-in-hand. An old man, with no particular place to go, sat on a bench, his legs crossed, just watching the world go by. And “here I am, walking down the street”, John thought, “just me and my cancer”.
He got home, went upstairs, and sat down on the end of Julia’s bed. A busy young woman, she’s usually not around. He was so glad she was home. They had one of those moments together in which your father says words you never forget. She would try to get in touch with me, muster courage, drive him to the hospital, and then, text again to find me in a meeting at school. When I got to the lobby at Mt. Auburn, John already waiting his turn in Radiology, my girl, with tears welling up in her brown eyes, and I, still stunned, shared a crushingly significant embrace and vowed to one another to be strong for him.
John and I left the hospital after 9PM that night, disappointed there would be no assessment of the scan for us just then. We were relieved to learn from the technicians, though, that we could get this news the next day, Saturday, from the on-call doctor for his PCP.
That was a week ago Friday. Our original optimism about getting next-day results of the CAT scan faded pretty quickly. If my long day of phone work on Saturday, still unproductive by 5PM, was frustrating, we soon realized that “the endless waiting” for results, call-backs, appointments, etc., is one of the chronic challenges that comes with the territory. Friends have shared similar experiences.
So, determined, even while doubting the possibility for satisfaction on the Sabbath, we pushed through by calling Harvard Vanguard Sunday morning. A bit tired and a little cranky, I did not hesitate to express my dissatisfaction with the ridiculous number of undelivered call-backs promised us the day before. Given the vulnerable emotional/psychological state of this shocked, scared and befuddled family, evolving in good part from a sheer lack of critical & timely information, the compassionate after-hours answering service woman took our plea quite seriously. She took John’s birth date and promised to put in yet another note to the on-call doctor. (John, maintaining his sense of humor, expressed an ambivalence around his name, Dr. Angel.) But, thankfully, hearing my skepticism around the efficacy of yet another “note”, she did more. She called the on-call person directly and he, in turn, contacted John’s Dr. Gullapalli. We received his informative call within 20 mins.. Watch out what you hope for.
As John and I leaned into our landline phone, speaker-on and standing at attention on the hard granite counter of our kitchen island, forever the very center of our dear home life, we didn’t want to miss a word of Dr. Gullapalli‘s detailed report. The CT scan had shown that John has lesions not only on his liver, but on his skull, lungs, and in the lymph system of his abdomen. Hearing that, well, at first, they were just words. It is impossible to move instantly from a mostly healthy and positive life for which I’ve been endlessly thankful and appreciative and at which good fortune, even, from time to time, I’ve simply marveled, to such a drastic change in our reality. Neither of us would be able to take it in that moment.
Fumbling in my head and heart to make some sense of this, I asked in words I did not even recognize as my own, “What is the spectrum of hope here, doctor?” “It’s very wide as, until we find the source of the cancer and what kind it is, anything is possible.” We found relief in that, but then, we were looking really hard for relief in those moments. Any response that did not include “You have ….days to live” would have calmed our fears. He provided a lot of introductory information about cancer and how, in a general way, we could expect things to unfold. For every fact he shared, we had questions to which he gave clear answers. Dr. Gullapalli then told us that he would connect us, first thing Monday morning, with a doctor who would determine the best way to procure a biopsy.
Per Dr Gullapalli’s instruction, John called Mt Auburn first thing Monday morning to get the appointment for a biopsy. Another day passed before someone offered him “a week from Thursday.” We talked, considered the absurdity of waiting another ten days for a biopsy, and decided pretty quickly to insist on something sooner. Having been schooled, now, in his wife’s and his sister-in-law’s “are you serious?”, lightly demanding approach to those wielding the scheduling power in medical offices, John called “the scheduler” back and restated his case. “Look, I am a 71 year old man who found out three days ago that I have cancer, and yesterday I learned it’s all over the place. Before that, every test I have had has been followed by long days of “not knowing”, sometimes a full week of excruciating waiting. I’ve been increasingly fatigued and, now, unable to function for more than five minutes without needing to lie down on the couch. I have been feeling awful for months. Please don’t make me wait again.” Somewhere toward the end of that sharing, exhausted by his ordeal, John began to cry. And he heard, “Oh, okay. I’m sorry. Can you wait just a minute?” We learned later that she had left her desk, found the chief of oncology, described John’s plea, and, from this compassionate doctor, “I’ll see him tomorrow.”
By early Wednesday, not soon enough, we sat down with Harvard Vanguard’s Chief of Oncology (Kenmore Square), Dr. Bita Tabesh. Her confident, supportive, and informative demeanor was reassuring as she gladly encouraged our plan to record the consultation with my iphone. Giving us an hour of her attention, she examined John, acquainted herself with John’s medical history out loud, and explained cancer (if, indeed, one can) and the range of professional responses available from her organization and the network of premier facilities of which it is a part. I should not worry about “knowing enough to choose the best care for John”. This HMO and others in the medically-renown Boston area are well-informed about available options and will not care for a patient if his specific cancer is better served elsewhere. In other words, the best place will be chosen for you! We have to believe, but will remain vigilant.
Looking back, this woman’s positive attitude, one she has shared in each of her now regular end-of-every-few-days check-in calls, really does make a difference in how we feel moving forward. Often, her voice on speaker phone, strong and bright, like that of a very med-savvy angel from somewhere out there, is punctuated with her good, almost eager listening. We take turns asking questions and, checking our understandings out loud, appreciate her clarifications and updates on a diagnosis/treatment still evolving.
For those first several days, we had been drifting in the black space of an unknown reality, a fact-hungry place, arms and legs thrashing for something solid to hold onto. Alone in our own heads, our minds flew from the most bleak projections to the least devastating, unwittingly wearing us down. Partly because she has determined that the lesions in John’s body are of the scattered variety, a metastatic (spread to various parts of the body) cancer, Dr. Tabesh, a relatively young, but seasoned oncologist, suspects that this might be a lymphoma of some sort. Of course, just weird to find ourselves, our lives suddenly upended, suddenly viewing lymphoma as a kind of gift! Yay, it’s the curable cancer! The big “but” is, of course, only the biopsy will tell for sure. In addition to that, a full-body bone scan will be scheduled. “Our” oncologist also told us that the CAT scan shows that there are lesions in the bone of the pelvic area and environs.
Even as John and I have tried to say the word “cancer” in sentences containing references to ourselves, we find it jarring and it still doesn’t roll off the tongue without that old gravity, one so well-earned. John’s little brother, Dennis, nine years his junior, suffered and died from a brain tumor two years ago. It never became a familiar word or any easier to say as it became the cause of an unthinkable toll taken on all of us, in particular, his dear wife, daughters, and siblings. It has a nearly unspeakable quality that becomes all the more scary when, now, it is pointing its hairy finger at John! Just as the “s” word (yes, “suck”) will never loose the negative punch it has carried for me and those of us who grew up in and hold onto the fifties’ and sixties’ I Love Lucy and Father Knows Best sensibility about language’s charge to uplift, so, all the more, the catastrophic implication of the “c” word. However, given the remarkable advances in medical research for some forms of the disease, the association is rooted more in medical history than in the present state of available treatments. But, at the risk of waxing too positive, it remains, in many cases, a little word with tremendous clout.
Before school yesterday, having waited for this appointment only two days beyond our meeting with the oncologist, I drove John to Mt. Auburn Hospital for his biopsy. A “ good sample” was taken from a lesion on his liver. By the way, I can already see the up and down trend of this adventure. My impression around the size of all these lesions has been that they were on the small side. That may well have been my own wishful thinking influencing my reality. But John came to learn yesterday, from the biopsy expert, that the lesion from which this specimen was drawn is the size of a golf ball! “It could be worse!”, is becoming one of our go-to lines.
We are told to expect a diagnosis sometime during the first half of this coming week. Actually, truth be told, the reply to John and Julia’s inquiry regarding the wait, “If you don’t hear from us by Wednesday or Thursday, call on Friday.” I will be on the phone Monday, and, if need be, Tuesday again. As a matter of fact, give me the lab address. I may go and sit in the hallway. Let’s get this show on the road!
Pray, friends, that all will be well. And know that your love is felt here in all the caring and concern, the lovely support in each of your kindnesses. Many of you, having fallen in like good villagers in a common catastrophe, have already held us up. We four are not surprised by the calls, emails, and texts filled with your generosity of spirit and offers of help, but, still, we are awed.
(Perhaps, if need be or eventually, in answer to offers of practical help, as weird as the idea of folks signing on in such an organized way may feel right now, I will add a calendar website to organize those efforts.)
~ Sheila Gilligan
april 9, 2016
Last Friday was April Fools day. My family loves practical jokes, surprises, shenanigans, you know, all the fun stuff that doesn’t feel fun in the moment when you’re on the wrong end of it – but we’ve been off our game in the past couple years.
My dad has always been the King of Gags. He knows how to toe the line of what might be considered too much (I may have come close to having a few heart attacks as a child when a booming voice would echo suddenly from the depths of a dark closet) but it always ended in a laugh.
So when he came into my room on Friday and sat on my bed and told me he had cancer, I had never hoped so wholly that he was playing a prank.
“You’re joking, right?”
When he shook his head and looked at me with tears in his eyes I still had a tiny voice that was impressed with his acting ability.
But this time he wasn’t joking. He had just come back from the doctor, they’d called him in to give him the results of his blood work and sonogram: tests that were done because he’d been feeling awful for the past 3 months. We had been seeing all of his symptoms as independent of one another: which is exactly what doctors don’t do. He’d been losing weight, 15 lbs since January (“you’re losing that belly, John! You look great! Let’s keep it off!). He’s had a persistent cough (“are you taking your allergy meds?”). He’s been feeling fatigued after even the smallest amount of exertion (“that sleep apnea keeps you from getting a good night sleep”). He’s been queasy (“could it be a stomach bug?”).
He sat on my bed with his head drooped and told me that the sonogram showed masses on his liver. The doctor ordered a CAT scan for this afternoon.
I hugged him, my head buzzing in utter shock. “Ok, we’re leaving now?” I asked, feeling like our roles were suddenly and completely reversed. My hands shook as I groped around in my bag for the keys.
“No, no, it’s ok, the dogs need to get out for a walk and they need to eat, I’ll just go, and…” he began, trying to make everything stay okay. There was a part of me that wanted to accept what he was saying, it sounded nice, it sounded like what was happening right now wasn’t the horrible thing that it felt like it was. There was so much of me that wanted to just see the fantasy that he was sketching with a dull pencil over this marble statue that had just landed in front of us.
“Dad, I’m driving you, let’s go.”
We drove mostly in silence. I asked him a few questions. We were both just taking it in. He told me that the nurse practitioner was the one who had to tell him. He said she clearly felt awkward and uncomfortable. Of course, he was thinking about how she felt.
As I drove I bit down again and again on the insides of my cheeks to help suck the tears back into my eyes. If he wasn’t blubbering I wasn’t going to, at least right now.
He directed me to the parking lot and when we got out of the car it felt like any other time, as if we were headed to go see a superhero movie, or get a cheeseburger, or browse a yard sale on a summer day. But instead we were in one of the “parking for emergency room only” spots, because my dad has cancer.
“Wait, we didn’t get a ticket, how do we pay?” I asked him, the part of my brain that does adult things was somehow still functioning.
“That’s why I told you to park here,” he said with his santa-laugh, “no paying.”
We found out after the CAT scan that my dad has masses on his liver, lungs, lymph nodes in his abdomen, and in his skull (bone, not brain). He is going to get more tests done to determine what type of cancer it is.
My mom and I will be updating this blog at some sort of pace. We want to have a place to keep people in the loop and do some therapeutic writing. Thank you, friends and family, for all your support.
april 4, 2016