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 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, 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) staff – from an external source/skin?, possibly on his port (which is being considered for removal).
Antibiotics continue to flow into him. Plan to be here with John for 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 (warrior part of 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.” Hoping & praying she’s a good predictor!
4:30 PM, Tues.
Got John sitting up on side of 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.
He’s hooked up and 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, he has also had to deal with all variety of near constant discomfort around his digestive system. His appetite, naturally, is down. In bed mostly, in chair some, but extremely weak with some nausea. 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 his port was infected with staff, it was removed yesterday. Prudently, the team is giving that wound a “holiday”, a chance to heal before installing another.
Again, both bacterial infections, e coli from gut & staff from 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