The Ordinariness of One Pretty Good Day after Another

              The outpatient clinic on Cox 1 was closed for MLK Day, so we went to Lunder 10 for the requisite semi-weekly labs. The counts continue to look good; no need for a transfusion today. David stopped taking hydroxyurea several days ago, so it appears that the decitabine is effectively lowering the white blood cell count.

            Here are the numbers:

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Absolute Neutrophils	Hematocrit (red blood cells	Platelets
5-Jan-15	2.16	6.0%	0.17	25.60	39.00
8-Jan-15	1.58	4.0%	0.16	22.10	39.00
12-Jan-15	1.04	4.7%	0.12	22.40	40.00
15-Jan-15	1.40	16.0%	0.03	22.40	38.00
19-Jan-15	2.29	pending	pending	23.70	29.00

            So, we continue trying to remember to appreciate each uneventful day. As Jim wrote in his summary of the past year: “Except for a few days of severe intestinal pain just before Christmas, the past five weeks have been the best since March. Mary, David, and I each seek in our own way to deal with the prospect of imminent death mixed with the ordinariness of one pretty good day after another.”

Happy Little Christmas

            6 January 2015: Epiphany, the day to celebrate the wise men from the east finding the young child, Jesus, and presenting him with gold, and frankincense, and myrrh.

            December was rough. After watching David’s white blood counts rise, to 90, 91, and 95 (very bad news) in the first week of December, he was admitted to Lunder 10, inpatient, on December 19^th, with severe abdominal pain: enteritis, or inflammation of the intestine. He was discharged on Wednesday, 24 December, in time for Christmas. And for 27 hours on December 27-28, all of our progeny were together in Lexington.

            New Year’s Eve, Matt drove David down to Manhattan to spend the holiday with all their siblings at R’els Manhattan apartment. Some went to Central Park for the midnight 4-mile run.

            On Friday, 2 January, David began the second round of decitabine chemotherapy. It’s caused some nausea and fatigue. His hematocrit (red blood cells) and platelet counts are relatively stable; the white blood cell count is low, which is great news. He finished his fifth and final infusion today and will take 3 weeks off while his blood counts recover.

            Here are the blood counts. For now, the goal is very low WBC.

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Absolute Neutrophils
19-Dec-14	35.24	68.0%	1.40
20-Dec-14	27.57	55.8%	0.96
23-Dec-14	12.83	55.0%	0.38
24-Dec-14	7.99	23.4%	0.36
28-Dec-14	2.91	32.4%	0.10
31-Dec-14	2.56	7.6%	0.00
2-Jan-15	2.56	18.0%	0.13
5-Jan-15	2.16	6.0%	0.17

Merry Christmas

                We are having a lovely, peaceful Christmas. David returned home from MGH on Wednesday, 24 December. His appetite hasn’t returned, but he’s able to eat more than the clear fluids of a few days ago.

               

                We played a rousing game of Triple Threat two days ago, and Pit last night. We’ve had delicious food, so far, including the Hazen traditional lasagna for Christmas Eve.

                We will never know what caused David’s enteritis, inflammation of the gut: specific infections can only be identified by culturing a sample. From a culture we know David didn’t have C-diff (which he had in early May), but no other details.

Crisis Averted

David’s abdominal pain has lessened, which is a relief to all of us, especially to him. Counting the rows on the table below, I note that we’ve come to MGH for 60% of the days in December.

Below are his lab results. Every time you see the white blood cell count go down, it is because of hydroxyurea. [I’ve described that drug in my December 18^th post, “17 Come (Mon)day”.]

I’ve added a column: ‘Absolute Neutrophils’. These are the ‘good’ white blood cells that are mature and can fight infection, so the higher the number, the better his immune system might be. There’s one big caveat: these blood tests cannot measure exactly how many of these neutrophils are functioning properly.

Of course, things may go south before that, but for today, David is alive.

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Absolute Neutrophils
24-Nov-14	21.94	55.0%
1-Dec-14	90.36	64.5%
2-Dec-14	91.51	76.0%
3-Dec-14	95.27	72.0%
4-Dec-14	76.39	75.0%
5-Dec-14	42.78	72.0%
8-Dec-14	8.20	59.0%	0.55
10-Dec-14	3.84	44.3%	0.13
12-Dec-14	6.19	54.0%	0.25
15-Dec-14	17.88	55.7%	0.79
18-Dec-14	38.56	67.0%	0.39
19-Dec-14	35.24	68.0%	1.40
20-Dec-14	27.57	55.8%	0.96

Looking Better

            David is looking better. He watched some football and is on his computer right now. Always a positive sign.

Star date 201412201500

                   Around 11 a.m., David’s blood pressure was down to 70 over something. His nurse for the day, Meg, was concerned. She gave him a bolus (a single dose, given all at once) of saline by IV and then red blood cells. The low blood pressure was concerning (both Meg, and a nurse practitioner, Colleen, were here together at one point), but not an emergency. By noon it had risen to 87/41 and at 12:37 p.m. it was back in the normal range: 98/53. It’s been stable since then.

Colleen is concerned that his belly pain isn’t lessening, despite two doses of morphine. He’s on broad spectrum antibiotics and has no fever, which are both good things.

            Jim drove a U-Haul truck to the Bishops Storehouse in Worcester early this morning, then came here to MGH. David’s been resting quietly all morning.

Lunder 10 Once Again

            Well, Dr. Fathi suspects an intestinal infection: colitis can be ruled out (sorry, lame joke), might be enteritis. So, even though David has no fever or chills, he’s been admitted back up to Lunder 10. We’ve been here for an hour and I just thought to look out the window. We score big time! The Charles River sparkles below us and through a tall and shorter building I can monitor the Storrow Drive traffic: currently moving slowly in each direction. Last stay we had a boring view of a wall. If I pressed my head against the glass at the far side of the window, I could see the state capitol building. But this view, this view will be spectacular tomorrow, when the sun is up.

David will be starting the prep for an abdominal CT scan soon: 3 doses of oral contrast and contrast by IV as well. He is nauseous, so the prep is not welcome.

            We’ve spent the day at MGH, starting with our semi-weekly 10 a.m. appointment. I knew it would be a long day when Judy, the nurse practitioner, showed up 20 minutes before her appointed rounds. I got a break in the middle of the day: I drove to Waltham to see my therapist of 13 years. Got lost 3 times (must be a bit stressed today), including a time when it took the GPS 5 minutes to “re-route”. By then I had understood and corrected my mistake. As Red Riding Hood says in Into the Woods: “Do not put your faith in a cape and a hood; they will not protect you the way that they should.” I’ll include GPS in that. Next time I’ll review my trusty map. Don’t get me wrong, GPS is amazing. But not foolproof (hmmm, what does that make me?), especially in Greater Boston.

            David has done well: keeping out of the hospital since September 3^rd. (No, I didn’t have that memorized: hurray for MS Word search.)