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.)

Dad's Wake

            Shortly after my dad’s death, in response to one grandson’s Facebook post, a second grandson suggested wearing Guayabera shirts to dad’s wake. Dad was famous for his Caribbean four-pocketed shirts. He loved the convenience of having extra pockets and the comfort of the roomy fit and open collar. At first he purchased the traditional style: pastel blue or yellow or white shirts with tiny pleats down the front. I once made him a shirt with a bright tropical print and over the years he ordered many colorful, custom-made shirts from a seamstress he met at a street fair in Frederiksted, St. Croix, U.S. Virgin Islands, where Mom owned two condos. (She bought the first while Dad was scuba diving one morning.)

My brother, Carl, raided Dad’s closet and brought a stack of Guayabera shirts to the dinner at J.J. Bitting Brewing Company. I wore one of Mom’s summery dresses, despite temperatures in the 30s. My sister, Maggie, wore a skirt that matched her husband John’s Guayabera shirt: both were gifts I made several years ago. David discovered his Hawai’ian shirts in the garage; he thought they might be at Fort Hood in Texas.

            Even Dad got into the act, thanks to Carl. He looked relaxed and dashing in his long sleeved four-pocketed shirt. When the priest arrived to say a prayer and a few words, he was a good sport and donned a colorful shirt well. (Don’t tell the bishop of the diocese!)

            Dad looked just like Dad. I kept waiting for his chest to rise. I never notice normal breathing, but its absence was startling and disconcerting. From his face you would think he was just taking a nap. His hands didn’t look quite right: slightly dehydrated and weak, but his salt-and-pepper beard was perfectly trimmed.

            At the funeral Mass on Tuesday, December 9^th, we again dressed tropical, brightening up St. Mary’s Church. The cold, wintry rain menaced our intrepid band and at St. Mary’s Cemetery a sudden gust of wind lifted a pole, threatening to drop the tent on us. A muddy backhoe rested next to the open grave and the dislodged headstone; rust-colored mud splatters undid Dad’s careful November cleaning. A Navy bugler played a hauntingly beautiful “Taps”; a Navy honor guard carefully folded the wet flag and presented it to my sister in gratitude for my dad’s service during World War II.

            Then we went to The Barge, a short block down the hill from Dad’s house. The owner, Alex, had set up long tables in the barroom and we ate a few feet from the barstool where he’d sip his beer and catch up on the local gossip.

            We miss you, Dad!

17 Come (Mon)day

Noon

            Ralph Vaughan Williams used “Seventeen Come Sunday” in his Folk Song Suite. I love the tune.

I wish I’d posted a week ago, when David’s WBC was a comforting 6. By Monday, December 15^th, it was 17 and today, December 18^th, it’s 38. Doubling in three days. Doing the math, unchecked it could be 310 just nine days from now, December 27^th. The blast percentage has risen from 55.7% to 67.0%.

And he’s been unable to keep the hydroxyurea down.

            Hydroxyurea (Hydrea is a brand-name) kills blood cells in the bloodstream, but does not attack the source of the leukemia in the bone marrow. It keeps the symptoms of a high white blood cell count at bay, but eventually, unless the decitabine kicks in, the blasts produced in the bone marrow will take over, clogging the capillaries. The lungs and brain are especially susceptible, reducing the oxygen exchange in the lungs and potentially causing bleeding in the brain.

            As Judy Foster, the nurse practitioner, explained, decitabine is a more ‘elegant’ drug than the others he has had, which work by brute force, killing fast-growing cells, such as leukemic white blood blasts, but also red blood cells, causing anemia, and platelets, heightening the risk of uncontrolled bleeding.

            We’re at Cox 1, the MGH outpatient clinic, where David is resting while he receives saline fluid to treat his dehydration. They’ve given him an anti-nausea medication and will try a dose of hydroxyurea in a little while. Unfortunately, there is no IV form of the drug: it has to go through his digestive system.

            Judy offered David the choice of returning to Cox 1 tomorrow or being admitted to the inpatient Lunder 10. For now he’s opted for the outpatient route.

            She’d like to give him a liter of fluid, so we’ll be here until at least 3 p.m. Glad I brought my computer and Kindle. Sorry David doesn’t feel well enough to do anything but rest in a darkened room.

A Tribute to George G. Hazen

      

           George G. Hazen died on Thursday, 4 December 2014, in Perth Amboy, NJ. He was 91 years old.

            My dad grew up on a wheat farm near Highwood, Montana. He graduated from Fort Benton High School, did his undergraduate studies at Montana State in Bozeman, and in 1950 received a PhD in Chemistry at the University of Michigan. As a chemistry teaching assistant, he met an undergraduate from Nebraska City, Ruth Evelyn Farrell. In 1948, he married Ruth and over the next ten years they had six children. Mom died on 26 August 2013. They had just celebrated their 65th wedding anniversary.

            Dad was a U.S. Navy World War II veteran. He worked as a research chemist for Merck & Co. in Danville, PA and Rahway, NJ for 40 years, before retiring in 1991.

            As my brother, Steve, wrote:

He chose Merck because he wanted to help heal those who are sick.   Among the proudest accomplishments in his professional life was his work to create an affordable manufacturing process for the drug cortisone – a drug that was considered a miracle drug when it was first discovered and is still widely used today.  The first batches of cortisone cost $8,500 for a gram of drug – prohibitively expensive for medical practice in the late 1940s.  The Merck team reduced the price per gram to $30 by 1951 and continued to refine the manufacturing process.  In 1957, he was sent to the Philippines, Australia and Holland to set up processing operations for cortisone in those countries.

International travel is a legacy and a passion that his children and grandchildren continue to enjoy.

            My dad shared many things with me, his deep faith, his love of learning, scuba diving and fine dining, to name a few. I am so grateful that some of us were able to travel to Fort Benton, Montana, for a Hazen-Holmes reunion in July. We drove to the old ranch house, which never had running water, now abandoned and surrounded by wheat fields, and enjoyed the Montanan Big Sky, with the Highwood Mountains in the distance.

            Even in his ninety-second year, Dad kept active: attending daily Mass and swimming at the Perth Amboy YMCA, and in the evening walking down a block to The Barge for a beer and the local gossip.

            I miss you, Dad. Say hi to Mom for me.

42.7? It's All Relative

            On Friday, 5 December, David’s white blood cell count (WBC) was down from 95 to 42.7: a comforting ending of a difficult week.

            On Monday, 1 December, David’s WBC was 90. That means the number of white blood cells, over 65% of them leukemic blasts, had more than quadrupled, from 21.9 to 90, in just a week. The doctor increased his dosage of hydroxyurea from 1 to 2 grams. On Tuesday, the WBC was 91, so the hydroxyurea was increased to 4 grams. Wednesday the WBC was 95, and the hydroxyurea was increased to 6 grams.

            Dr. Gaby Hobbes, filling in for his regular oncologist, Dr. Fathi, initiated a very serious conversation with us on Tuesday. She told us that a WBC of 90 was really high. [When David got very sick in Korea, last March, his WBC was 147. Remember, 4.5 to 11 is the target range.] She explained to us that having a WBC of 90, of which about 76% are leukemic blasts, can cause sudden, serious complications. The leukemic blasts are “sticky” and can clog capillaries in the organs, including the lungs and brain.

            We started discussing hospice, with the clear understanding from Dr. Hobbes that if hospice care is started, David would still be treated with chemotherapy, as long as it was effective. There’s absolutely no expectation that the leukemia can be stopped; we hope that the chemo can slow the progress of the disease.

            And the high dose hydroxyurea did slow the leukemia this week. On Thursday, the WBC was down a bit, to 76, and Friday it was 42.7. That’s nearly three times the October 26^th count, but it’s all relative, isn’t it?

            David continues to look good and is not in pain. His beard is looking absolutely presentable, though not very long for a man who hasn’t shaved since March.

Friday was the fifth and final day of decitabine. It takes about an hour to administer via IV. Now we hope for the WBC to decrease. Decitabine is much gentler than the previous chemotherapies David has had. The regimen is 5 days of decitabine every four weeks or so. We won’t know for a few cycles if it is effective. If the WBC starts rising quickly again, we’ll know it’s not working.

            David, Jim, and I attended the Cambridge Stake’s annual Messiah Sing at the Belmont Chapel last night. The soloists and orchestra was excellent and the chapel was full of enthusiastic singers. It’s a wonderful way to start the Christmas season.

Decitabine

            I’m sitting in a room at Cox 1, the leukemia outpatient clinic at MGH, which we inhabit for two or more hours twice a week these days. David is napping while he receives his first infusion of yet another chemotherapy drug: DECITABINE. It is mainly used for myelodysplastic syndrome, a blood disorder in which the bone marrow doesn’t produce healthy blood cells of any type: red, white, or platelets.

Decitabine is also used for AML (acute myeloid leukemia), in which the bone marrow produces too many immature white blood cells (blasts), which proliferate quickly and crowd out the healthy white blood cells (increasing the risk of infection), red blood cells (causing anemia),  and platelets, (increasing the risk of uncontrolled bleeding).

            David will return to MGH every morning for the next 4 days (5 days total this week) for an infusion of decitabine, then take 3-4 weeks off while his healthy blood cell counts recover. As Dr. Gaby, who is covering for Dr. Amir Fathi this week, explained, decitabine is a slow acting chemotherapy. We won’t know for several cycles (5 days of infusion, 3-4 weeks waiting for the blood counts to recover) whether it is working well. If it is not working, we’ll know quite quickly: the blasts will continue to increase rapidly.

            David’s white blood cell count was high today: 90 (thousand), increased from the November 24^th reading of 24 (target range is 4.5 to 11). He will continue to take hydroxyurea for a few days to lower his white blood cell count and give the decitabine some time to start working.

            So, as has been the case since the beginning, no news will be good news. The overall prognosis is still very poor: we are not expecting a cure at this point; we do hope for some time where David continues to feel fairly well.

Twice a week they do a complete blood count (CBC) and measure the number of white blood cells and what percentage of those are blasts (leukemic cells). Less frequently they aspirate bone marrow from David’s hip and measure the percentage of blasts in the marrow, where all blood cells originate. None of the news is good.

            The bone marrow biopsy on November 20^th showed a large increase in the percentage of blasts in the bone marrow, where all blood cells originate: 83% blasts, up from 14% blasts on October 6^th.

Date of Blood Draw (CBC)	White Blood Cell Count	Percentage Blasts in circulation	Date of Bone Marrow Biopsy	Percentage Blasts in Marrow
6-Oct-14	2.2	2.60%	6-Oct-14	14%
10-Oct-14	2.7	8%
15-Oct-14	3	9.20%
23-Oct-14	15.7	47%
24-Oct-14	14.9	53%
26-Oct-14	15.5	65%
30-Oct-14	8.81	55%
2-Nov-14	6.68	33%
5-Nov-14	4.8	39%
10-Nov-14	7.29	29%
13-Nov-14	8.73	46%
16-Nov-14	10.04	29%
20-Nov-14	12.29	53%	20-Nov-14	83%
24-Nov-14	21.94	55%
1-Dec-14	90.36	65%

            All travel went well. R’el and David drove 1000 miles to spend time with Matt (Chicago), with a 130 mile side trip to see Annie (U of Wisconsin in Madison) and bring her down to Chicago. They had Thanksgiving dinner with Jim’s mom: Meemaw, a.k.a. Charlotte. Matt moved to the neighborhood of Bryn Mawr on the north side of Chicago, near the lake.

Jim and I flew to Salt Lake City to spend Thanksgiving with Jim’s brother, Jeff. We took a side trip to Shelley, Idaho, where we held a planning meeting for the Alan and Mary Cannon Reunion, 24-26 July 2015. (Mark your calendars!). We stayed two nights at Charlotte’s house, which Alan and Mary built back in 1965, when Jim was ten. Jim had never been there by himself; his whole family used to visit from Chicago every summer. It was a wonderfully relaxing getaway. The house is set right on the Snake River, visible through the floor to ceiling windows. Back in Salt Lake, I took a 7 ½ mile walk, covering all the side streets between 900 East and 1300 East, from 45000 South to 39000 South. The weather in Salt Lake was warm and lovely. We all missed the snow in Lexington.

            Last night was our first Advent Sunday. Advent is celebrated during the four Sundays before Christmas. We have hosted Advent evenings every year since 1998 (17 years!) This year we’ve invited 22 friends, including 9 children and an infant. We had Chinese sundaes (a.k.a. Hawai’ian haystacks), read short scripture passages about our Savior, Jesus Christ, and sang Advent and Christmas carols. Saturday afternoon, Autumn helped me set the tables and install the electric window candles throughout the house. David is feeling well, and is not neutropenic (low white blood cell count, which can lead to infection and therefore requires special precautions). He was a kid magnet, helping the youngest two girls “read” their scripture verses. It felt so warm and comfortable to have a house full of children, with David able to eat, read, and sing with us all.