David’s appendicitis

            Spoiler:

            David had appendicitis last night, 7 April, and underwent a laparoscopic appendectomy, which he tolerated well. A few hours later he was back on the oncology ward with an IV for two extra antibiotics, flagyl and cefepime. He was already receiving Bactrim to prevent infection.

            At 9:07 a.m, I spoke with the surgery nurse at WrenMiMiC (Walter Reed, remember?):

            “You’re from Massachusetts, right?”

            “Yes, I am.”

            “His nurse is from there, too. You all have the same area code.”

            When I arrived at his oncology ward room, David was awake and looking good. He now has three tiny scars, each about an inch in length. The camera went through to center one near his navel and the two arms used for removing the inflamed appendix entered a bit lower, one on each side of the abdomen. I arrived just as the rounds doctors were leaving his room, so I got to meet the oncologist who will be following him for the next two week rotation:

            “Any news?”

            “He doesn’t have an appendix anymore.”

            Matt noted that David had had a “lappy appy”. And since he was tired afterwards, he took a lappy appy nappy.

            My sister-in-law cancelled my Amtrak tickets. I had had a good night's sleep and feel calm and rested.

            At 7:30 p.m. Ensign Frank, who isn’t assigned to David this week, stopped by. David was napping, but she whispered from the door, “How’s he doing?” She was dressed in civilian clothes, with a big black backpack. She’s a sweetheart.

            Our extended family will have a time of personal prayer and fasting starting after dinner on Saturday evening, April 12. Fasting in our church (The Church of Jesus Christ of Latter-day Saints, I’m a Mormon) involves not eating or drinking for 24 hours (that is, skipping 2 meals, but only if you are healthy and able to tolerate it) and praying privately. There’s no expectation on my part that you participate, but I wanted to inform everyone that checks this blog, in case they want to join in.

Neutropenia

                      David continues to eat and walk the floor of the unit. He wears a yellow paper face mask whenever he leaves his room. Since he is now seriously neutropenic (his neutrophil count is very low), his risk of infection is high. Neutrophils comprise about 60% of the total amount of white blood cells in a healthy adult body. They attack bacteria and fungi. The goal of chemotherapy is to kill the out-of-control cancerous white blood cells (blasts), but it’s a blunt instrument and kills healthy blood cells as well. David receives blood and platelet transfusions, but because they are part of his unique immune system, his own body must produce new, healthy neutrophils. He will stay in the hospital until his neutrophil counts recover.

            David will probably have a third bone marrow biopsy on Friday and get the results early next week. The hope is that the leukemia will be at undetectable levels, or in remission. If they are, he’ll have a fourth biopsy a week later, to confirm the remission.

FLT3

            David’s diagnosis is AML: acute myeloid leukemia, sub-type FLT3-ITD. His chromosomes are normal, but there is a gene mutation that is driving the leukemia process. It is one of the least favorable sub-types of AML, which in itself is an aggressive cancer. Basically, his bone marrow is producing too many immature white blood cells, which are crowding out his healthy blood cells, both white and red.

            With the great blessing of the internet, Jim and I were able to listen to the General Conference of our church (The Church of Jesus Christ of Latter-day Saints. We're Mormon.) with David and our daughter, R'el, in his hospital room. Jim and I watched the Sunday morning session at the Washington Temple Visitors Center. President Dieter F. Uchtdorf’s talk about sorrow spoke directly to my grieving heart.

            I’ve set a goal to update my blog 3 times a week. Feel free to pass this link onto anyone who is interested. And thank you all for your prayers, love, and support. I can’t describe how, but I can actually feel them bringing calm and peace into my life.

Wobbly hiss-hum

We get personal attention every time a staff member walks through the door. Everyone at the hospital is super friendly, and solicitous. (Sorry, editors, but I can’t think of a more literary adverb to express my gratitude. Any suggestions?) Invariable, every time anyone enters or exits the room or even passes by, they ask each of us in turn, Are you doing okay? Can I get you anything? Call me if you need anything.

David’s elbow extension is much improved due to his stretching exercises. He had an appointment at the inpatient occupational therapy gym in this building. There’s an outpatient occupational therapy gym in the America building, but he’s not cleared to go out of the building with active chemo. Probably could be cited for carrying a weapon: chemo is ‘powerful medicine’ (The Kid). Couldn’t get nailed on “possession of a concealed weapon”: the chemo bag is clearly labeled and visible on his IV rack. About once a minute, as he walks laps around the ward, I hear the wobbly hiss-hum of the wheels past the door. Tsch-tsch-tsch-tsch-tsch-tsch-tsch. His pace is steady; each time I hear exactly seven cycles, a seven-second swoshy Sixty Minutes stopwatch.

I hear the tech hail him: Doing your laps already?

The beard shows its mettle

David is tolerating the chemo very well. His white blood count is down, as hoped. His beard is getting downright bushy. On Tuesday he wrote:

We have won. Prior to today I was growing the beard betting that nobody was going to call me out on it, and I was correct. But as of today, I am officially forbidden from shaving. ha. Also I'm more than halfway through the first round of chemo and the beard is showing its true mettle

A personal milestone: At 11:55 a.m. the lunch lady comes to the door and says:

Miz Johnston, is your son gonna call down his lunch order?

Yes, he’s planning to do that.

She walks away a few paces, then comes back to the door.

Miz Johnston, when you called down last night, did you want a salad or a fruit cup? I looked at your slip and it said a garden salad and fruit, so they put an orange on the tray and said, ‘Hope she likes that.’

I ordered a fruit cup, but it’s fine. The orange was delicious.

They didn’t know if you wanted a garden salad and fruit or what.

I didn’t ask for a garden salad; I ordered the fruit cup. But the orange was delicious.

I hope it was all right.

I don’t actually care for garden salad; I always get the fruit cup.

Okay.

Individual attention and personalized service! What a country!

David's been in country for a week

Another blessedly quiet day. Since I don’t have internet access at the hospital (Jim’s and David’s laptops detect the hospital “patient” connection, but mine doesn’t), I spent about two hours processing emails at my brother’s house before heading for Wrenmimic a.k.a. Walter Reed.

In the morning David did a few “laps” around the ward, while reading The Music of the Primes and with his IV in tow, and napped in the afternoon. We had lunch and dinner together; the hospital food is quite edible and there are good, healthful choices.

I’ve been able to sleep soundly at night. Having bipolar disorder, good sleep is literally essential to my sanity. I’ve had psychotic manic episodes three times in my life, at ages 26, 39, and 47. I can’t afford to have another. But the medications work well for me (although I don’t like the side effects) and I have an excellent network of supports. Over the past two weeks I occasionally feel sad and cry, but mostly I’m calm and serene. I have confidence that Heavenly Father is in control of the universe and that all that happens in our lives, however painful, will be for our good.

I’m curious to know what sub-type of acute myeloid leukemia David has; the genetic and molecular results should arrive in the next week. David certainly has his young age, Army-level fitness, and good attitude in his favor. I’m touched by the support network we have. Family, church members, the hospital staff, DBSA-Boston friends (Depression Bipolar Support Alliance): all have made us feel loved and supported. I can feel the effect of the many prayers offered on our behalf.

New month, same chemo

David concludes that his excessive sleepiness yesterday was the side-effect of his first ever dose of Benadryl. Whatever the cause, I was relieved to find him yet again in good spirits and awake most of the day. Jim’s brother, also David, stopped by this evening. He has just started a new job and is on a business trip.

In Korea he developed phlebitis (inflammation of the veins) at IV sites in both arms. He cannot extend either arm fully. The occupational therapist evaluated him and prescribed simple stretching exercises to do several times a day as well as a more intensive workout with a therapist three times a week. David’s been told that he can go off the unit for the treatment. That will be a field trip for him: the first movement out of the oncology ward in a week. If permission is withdrawn, they will come to him.