Today was my second infusion with Hunstman Cancer Institute, and my first at Huntsman's new satellite campus in Farmington, Utah. It's half the distance from Huntsville, and Dr. Maughan spends two days a week there. 2 pm labs, 2:30 pm consult with Dr. Maughan, 3 pm in the infusion chair, and I'm out the door by 4. It was the once of my fastest door-to-door times yet.
I had nothing unusual to report to Dr. Maughan: the normal occasional rash on my scalp and face, occasional itching of the backs of my calves, especially in hot water; a couple of episodes of diarrhea more likely tied to a cold I picked up than to Opdivo, but I'm always careful to note anything out of the ordinary. We talked about whether I should alternate between CT and PET scans this year, as I did in 2018. Dr. Maughan was ok with either. I prefer CT's because they are faster and have lower radiation exposure, so we agreed I'd stick with that unless there was a reason to have a PET scan.
I asked Dr. Maughan whether he was going to the GU-ASCO 2019 Annual Meeting in San Francisco next week. Wouldn't miss it, he responded. He thought it was one of the best bladder cancer meetings of the year. I said that I would not be attending, even though NIH would give me an all-expense paid trip in connection with my service on the NCI bladder task force committee. I felt obligated to stay close to home to help care for and visit with Jennifer, who continues to struggle. I told him I'd expect a full report during our next visit.
A journal of my battle with metastatic ("mets") muscle invasive bladder cancer, chemotherapy, surgery, clinical trials, complete response ("CR"), relapses, and the joys and travails of life
Thursday, February 7, 2019
Friday, January 18, 2019
CT positive for earwax
Yesterday I had my first CT scan at Huntsman. I've lost count of how many scans I've had during my cancer journey, but I'm pretty sure it's over 30. I laid down on the table and asked the tech if she was going to run scans before and after the contrast, and she said that they usually didn't do that to keep down the level of radiation. I then asked her to verify that I was getting scans of the neck, chest, abdomen and pelvis. She said that my orders didn't say anything about the neck. I told her that the neck should be included, and asked her to call Dr. Maughan to confirm. In a remarkably efficient performance, within 10 minutes she spoke with Dr. Maughan's office, then Dr. Maughan, then scheduling, then insurance, and got all the required approvals. I smiled as she then proceeded to scan my neck and chest without contrast, then injected me with the contrast and scanned my chest, abdomen and pelvis. No charge for the extra millisieverts. As usual, the tech reminded me to drink lots of fluids for the rest of the day. As usual, I went to Five Guys and drank three liters of Diet Coke with my lunch. (I'm still participating in a personalized proof-of-concept clinical trial to demonstrate that drinking Diet Coke offsets any calories consumed during the same meal. The trial has been running for more than thirty years. Further research is needed.)
This afternoon Dr. Maughan's nurse called me with the results: stable disease. I asked whether the nodule in my lung was still there and showed uptake, and whether my superclavicular node was hot. The nurse paused, then admitted that she hadn't actually read the scans but was just passing along the message from Dr. Maughan. I asked her to send me the readings so I could see where things stood, and she did.
I found that three different radiologists had read my scans: One for the pelvis and abdomen, another for the chest, and another for the neck. The pelvis and abdomen scans were unremarkable, except for the observation that my neobladder had an "irregular contour." That's how they do it in Chicago, bub. The chest scan noted "irregular nodular opacity" in my upper right lobe, unchanged from my CT scan in September 2018. The node next to my left carotid artery continues to measure 13 mm, but it is not "hot" for hypermetabolic activity (e.g., active cancer growth). This is the same node that was showing hypermetaboloc activity in April 2018. The rest of the chest was unremarkable for cancer. The neck scan showed my supraclavicular cluster of nodes that showed hypermetabolic activity on my PET scan on November 28, 2018 to be the same size (1.4 cm x 1.1 cm), but did not show hypermetabolic activity on this scan. Most critically, the radiologist noted "debris within the left external auditory canal." Earwax! Confirmed by CT scan! Nurse, get me a Q tip, stat!
Bottom line for this scan: No active cancer. No new tumor growth. No shrinking, either. I'll stay the course with my nivolumab infusions and ongoing scans.
This afternoon Dr. Maughan's nurse called me with the results: stable disease. I asked whether the nodule in my lung was still there and showed uptake, and whether my superclavicular node was hot. The nurse paused, then admitted that she hadn't actually read the scans but was just passing along the message from Dr. Maughan. I asked her to send me the readings so I could see where things stood, and she did.
I found that three different radiologists had read my scans: One for the pelvis and abdomen, another for the chest, and another for the neck. The pelvis and abdomen scans were unremarkable, except for the observation that my neobladder had an "irregular contour." That's how they do it in Chicago, bub. The chest scan noted "irregular nodular opacity" in my upper right lobe, unchanged from my CT scan in September 2018. The node next to my left carotid artery continues to measure 13 mm, but it is not "hot" for hypermetabolic activity (e.g., active cancer growth). This is the same node that was showing hypermetaboloc activity in April 2018. The rest of the chest was unremarkable for cancer. The neck scan showed my supraclavicular cluster of nodes that showed hypermetabolic activity on my PET scan on November 28, 2018 to be the same size (1.4 cm x 1.1 cm), but did not show hypermetabolic activity on this scan. Most critically, the radiologist noted "debris within the left external auditory canal." Earwax! Confirmed by CT scan! Nurse, get me a Q tip, stat!
Bottom line for this scan: No active cancer. No new tumor growth. No shrinking, either. I'll stay the course with my nivolumab infusions and ongoing scans.
Tuesday, January 8, 2019
Intro to Huntsman; Infusion 56
After months of research, in December I switched my health
insurance to a Utah-based plan (AARP Medicare Complete, provided by UnitedHealth Care), effective January 1, 2019. I met my new PCP on Jan. 2 – a doctor
who had worked with Chelsea during her residency – and got the referral to my
new clinical oncologist, Dr. Ben Maughan
at the Huntsman Cancer Institute at the University of Utah. From 2013-16, Dr.
Maughan did a fellowship at Johns Hopkins, and I had met him while I was participating
in the Opdivo clinical trial at Hopkins in 2015-16. He’s an Idaho boy who got
his PhD in Pharmacology, went on to get his MD, and did his residency at the U
of U before going to Baltimore. He’s a young, energetic doctor who is up to
speed on the latest drug developments – just the kind of clinician I want to be
overseeing my care.
My initial appointment with Dr. Maughan was scheduled for
today, Tuesday, January 8. When I was setting up my appointment, I explained to
the patient care coordinator that my next nivolumab infusion was due on January
9. She said she’d have to check with Dr. Maughan to see when I should be
scheduled. Yesterday while riding in Snowbasin’s Needles gondola (22 inches of
snow in 48 hours!) I learned that I’d be having my infusion after meeting with
Dr. Maughan. I’m glad I had primed the pump by exchanging emails with Dr. Maughan.
This morning I made my way to the Huntsman Cancer Center by
driving up 100 South, next to the U of U campus. I hadn’t driven up that road
since I graduated from the U in 1985, and was amazed at all of the new
construction. The former Fort Douglas had been subsumed within the U’s campus. About
20 years ago, Jon Huntsman Sr. had started giving away his fortune made in petrochemicals
(especially sytrofoam) by founding a cancer center in Salt Lake City. $1.4 billion later, the
Huntsman Cancer Institute has become the premier NCI in the Intermountain West. It
has a gleaming new facility and is recruiting young and ambitious doctors and
PhDs. It certainly is the most beautiful of any of the 11 different cancer
centers I’ve been in, with large windows overlooking the Salt Lake valley.
I made my way up the patient education center where a bank
of computers were attached to printers, and printed out reports from the 8 CT
and MRI scans that I’d had in 2018. I knew my records had been sent to Dr.
Maughan, but I’ve learned that it never hurts to bring my most recent and
relevant records to an initial meeting with a new doctor. Since my appointment
was for 11:30 am, I expected Dr. Maughan to be running late, and he did not
disappoint. I’ve learned that a doctor running late is almost always a good sign,
since it shows that, once with a patient, the doctor will take as much time as is
needed. As usual for an NCI, a fellow came in first to
review my history and chart my case.
About an hour after my scheduled appointment time, Dr.
Maughan came in, introduced himself as Ben, climbed up on the examination
table, crossed his legs, and told me how much he’d liked reading my blog. Apparently
Noah Hahn had provided a bit of a preview. I asked him whether he minded my
talking about him in my blog. He smiled, said he appreciated my asking, and said
it was fine. I told him that if I ended up sending him half the patients who
had sought out Dr. Hahn, he’d have to send me a thank you card.
I reviewed with Dr. Maughan where things currently stood
with my cancer: inconclusive of whether and where my mets were growing;
currently continuing with Opdivo until someone had a better idea; Kaiser’s
proposal that I get Cyberknife radiation on my supraclavicular node; whether to
continue alternating CT and PET scans, or stick with CTs in 2019; and when to
start looking more closely at clinical trials. Very much to his credit, Dr.
Maughan did not propose radically changing anything that I was already doing. He
knew and respected Dr. Hahn and Dr. Apolo, and saw no reason to chart a new
course at this time. We agreed that I would continue with Opdivo infusions every
4 weeks. He was not inclined to move forward on Cyberknife at this time, since
the node was not causing any problems. He wanted to get another CT scan for
later this month, and promised that he would cc Drs. Apolo and Hahn on the images
and results. The decision of whether to continue with CT scans only, or to get
additional PET scans, would be driven by what the scans showed. Until and
unless my tumors were actively growing and larger than 1 cm on the short axis,
I would not be shopping for additional clinical trials.
We did discuss what trials might be appropriate, however.
Dr. Maughan’s specific area of interest is using biomarkers to predict and
guide future cancer treatments. It’s a tumor-agnostic approach, although he’s
mainly focusing on bladder and kidney cancers for the applications. He’s also researching
combination therapies that do not use ipilimumab, both because of the
toxicities of ipi, and because he sees more opportunity in that space. He was
aware of a couple of trials that will soon be opening that might intersect with
my future needs, but also understands that I’ll be drawing upon the expertise
of NIH and Hopkins when that day comes.
We also discussed whether Dr. Maughan had been active in
BCAN. While he was of course aware of BCAN, he has not had a lot to do with it,
but was very interested in broadening his exposure. He acknowledged that, as a
young cancer center, Huntsman had room to grow in areas of patient support
groups. He said that he was not aware of the online cancer support communities
sponsored by inspire.com, so clearly I have some education work to do. I told
him that Salt Lake had not had a BCAN walk, and that I was thinking about organizing
one for the first Saturday in May. He said he’d be happy to participate.
After our visit, I had lab work done. In a wonderful sign of progress, the perfusionist
used an IV needle and left it accessed since I was having an infusion in less
than an hour. Bandaged up, I went upstairs to the café and had one of the best
meals I’d had at a cancer center (blackened salmon, tons of mixed vegetables,
and a huge baked potato with a full potato bar). My brother joined me for
lunch, then we went down to the new infusion area. It took a while for the
pharmacy to compound my nivolumab – something about getting insurance approval –
and while waiting, guy came by with a cart full of snacks. I asked for some M&Ms
and he handed over 5 packages. The grandkids will think it’s Halloween.
I received infusion #56 while watching the sun set over the
Salt Lake valley. While the checkpoint inhibitor was being pushed into my arm, one
of the women who work in patient scheduling walked over to tell me that she’d
scheduled my next CT for January 17, and my next infusion for February 7. The
only thing missing was a full body massage. I told my nurses that those were a
standard option at cancer centers on the east coast, but for some reason they
didn’t believe me. Maybe next time.
Thursday, December 13, 2018
Consultations and infusion 55
For the past couple of weeks, my medical team at Kaiser Permanente
in Virginia, Johns Hopkins in Baltimore, and NIH in Bethesda, have been
reviewing my recent PET scan, comparing it to my other scans, and considering
my therapeutic options. I exchanged several emails with my Kaiser oncologist, Dr.
Iva Ferrera. She wrote that she was not convinced that the lung tumor was gone.
Just because the Colorado radiologist had not seen it doesn’t mean it’s not
there. She noted that a PET scan does not have contrast (unlike a CT scan), so
it can be harder to make out smaller tumors. She thinks that no action is
needed on the lung tumor, however, since it’s not of sufficient size to hit the
panic button. She thought that I should wait and see if continued scans show if
it continues to grow.
With regard to the supraclavicular node in my neck that is
once again growing and showing active metastatic activity, Dr. Ferrera thought
that I could also wait and see if that continued to grow. It’s not causing any
problems right now, and it has a history of growing and shrinking.
Alternatively, she thought that it could be treated with cyberknife radiation,
since it is the only tumor of significance currently showing up on my PET scan.
She also thought that there was the possibility that the lung tumor could also
be zapped with Cyberknife radiation if it continues to grow. Before making a
decision, she wanted to see what NIH said.
On Monday, December 10, I met with Dr. Andrea Apolo and her
team at NIH’s NCI in Bethesda Maryland. She’s followed my case since April 2012,
and I think that she is one of the most knowledgeable doctors in the world
regarding current and cutting-edge treatments for metastatic bladder cancer. After
I was screed by one of her fellows, she came in with her team to review my
options. She said that she’d recently talked with Dr. Noah Hahn about my case, and
that she said with a smile that she was not very impressed by my tumors. I told
her that I was happy to hear that. (You do not want to have an oncologist tell
you she is impressed by your tumors.) She didn’t think that I needed to enter a
new clinical trial right now (yay!). She asked that I send her a copy of every
scan so she could continue to follow my case, and we’d keep in touch by phone
or email. If and when it’s time to start a new clinical trial – most likely a combination
drug therapy trial – we’ll sort out the best drugs and which location at that
time.
For now, Dr. Apolo recommended that I continue with my
Opdivo treatments and taking a wait and see approach, with regular CT scans. I
told her about Dr. Ferrera’s idea of having cyberknife radiation, and Dr. Apolo
said that she was not opposed to the idea. Usually she would not recommend
zapping individual metastatic tumors, but in view of my young age and otherwise
decent health, radiation might be an option. She thought that it need not be
immediate, however – I could do it in January or after my next CT. I thanked
her as we hugged at the end of my appointment. I am so fortunate to have such a
skilled practitioner as part of my team.
On Wednesday, I went into Kaiser’s Tysons Corner facility
for nivolumab infusion #55. As usual, it was unremarkable: IV placement, 30
minute drug push, and done. It likely will be the last time that I’ll get an
infusion in Virginia, since effective next year I’ll be changing to a
Utah-based insurance policy. Notwithstanding my recent adventure with Kaiser in
Denver, I’ve come to appreciate the care I’ve received of the past three years
from Kaiser. When I first enrolled in Kaiser’s Medicare Advantage program in
2016 after formally retiring from my law firm, Kaiser noted that I was in a
clinical trial with Johns Hopkins and also enrolled me in the Kaiser Family
Foundation medical assistance program, which covered all of my deductibles and
copays. So for the past three years I have not paid a penny for any of my
treatments – Opdivo, or scans, or other medications. And the care that I have received
from my Kaiser oncologist (Dr. Ferrera) and my primary care provider (Dr. SummerAbdel-Megeed) has been as good as any doctor I’ve seen.
But alas, Kaiser is not in Utah, where I’m now spending most
of my time. Shopping for a new Medicare Advantage policy was a bit of a pain. I
first had to find a policy that covered the oncologist that I intend to see
(Dr. Ben Maugham). Then I needed to find out who much I’d be paying for
coverage, which is the sum of my monthly cost, the copays, the deductibles,
coinsurance, and whether Opdivo was covered. As near as I could tell, Opdivo is
not on any of the insurance company formulary lists of approved drugs. To find
out whether it is covered or not, I’ve had to call each company, educate the
rep about the drug, and learn the coverage limits. I’ve learned that Opdivo is
not considered a Medicare Part D drug, because it’s given by infusion in a
doctor’s office. That makes it a Medicare Part B procedure. The drug component
of the procedure is subject to an 80/20 split, with me paying the 20%, up to
the amount of the annual out-of-pocket maximum. The policy that I finally
settled on has an OOP max of $4900, which I’ll probably hit in the first month
or two of 2019.
This morning I met with Dr. Ferrera. I’d already sent her an
email updating her with Dr. Apolo’s thoughts. We considered setting up the
cyberknife appointment for next week, but I decided to wait until after the
holidays and will follow up with my new doctors in Utah next year. I thanked
her for her outstanding care and coordination with my other doctors. We hugged
and I told her I’d give her a shout out in my blog. Everybody now: Yay for Dr.
Ferrera!
Tuesday, December 11, 2018
Update on Jennifer
From time to time I've mentioned my wife's recent struggle with cognitive difficulties. From her sudden onset of catatonia 14 months ago, she's gone through seven extended hospitalizations, evaluations by more than 20 doctors at 6 different hospitals, and more than 20 different drug regimens. No one has been able to agree on a diagnosis, and none of the drugs have helped. We transferred her to a memory care facility this summer, since she needed more care and support than I could provide at home.
Jennifer has been in the hospital for more than two months.
She had become increasingly unstable while living at the memory care facility,
and her doctor wanted to adjust her medications while under observation. She
also had another round of scans and tests as a team of doctors tried to arrive
at a diagnosis. The only thing that everyone agrees upon is catatonia. But
everything else about her condition is atypical and defies a diagnosis of
dementia or depression or any other label. Her doctors now theorize that in
September or early October 2017 she had some kind of infection – perhaps a
virus of some sort – that caused some permanent changes in her brain chemistry
and electrical structure. For the past two months her doctors have tried multiple drug therapies, none of which have worked. The doctors now believe
that her recovery is unlikely, and that she likely will require assistance
for the rest of her life.
On Sunday I had a conference call with my four children to
discuss their mom’s poor prognosis, and make some decisions about her future
care. We arrived at a consensus to look for ways that Jennifer could be
discharged from the hospital, receive the appropriate level of care, and be
given the opportunities to find joy in life however she can. Over the past
couple of days I’ve spoken with multiple people to determine if we can arrange 24/7
one-to-one support by aides and techs at an appropriate facility. It’s been a
dizzying education on the limits and gaps in our health care system in caring for people
with cognitive difficulties. I'm applying all of the lessons I've learned from my cancer journey to advocate on my wife's behalf. Please keep Jennifer in your prayers – she (and I)
need all the help we can get.
Thursday, November 29, 2018
An unexpected PET scan
After my
CT scan in October that showed a metastatic tumor in the upper right lobe of my
lung, I scheduled a follow-up PET scan for 8 weeks later, to coincide with my previously scheduled Opdivo infusion in mid-December. The Friday before Thanksgiving,
however, I spoke with Dr. Andrea Apolo, the head of bladder cancer research at
the National Institute of Health’s National Cancer Center. She has been
following my case for years and had just reviewed my October CT scan. She
suggested that I should be able to get a PET scan after only six
weeks. I decided to ask my Kaiser oncologist in Virginia if I could get the scan
at a Kaiser facility in Denver, since I was going to be in Utah during that week (and Kaiser isn't in Utah).
It took a few phone calls and emails to pull it off, but everyone cooperated to
schedule a PET for me on Wednesday November 28 at a Kaiser facility in Lonetree,
south of Denver. A roundtrip Southwest
flight for the day was less than $100 (Frontier was $20 cheaper, but I refuse
to fly that lousy airline if there is any other option.)
Yesterday, my daughter Kirsten met me at the Denver airport, and a we were able to spend the
day together. She and her boyfriend had recently decided to tie the knot, and yesterday they asked me to officiate. I said I’d be honored to do so, as long as I was
still alive. The wedding is planned for next September, but 10 months is on the
long end of a worst-case scenario of my metastatic cancer going full-tilt and
nothing succeeding in slowing it down. It may seem strange to those who have
not lived with an uncurable metastatic cancer, but my family is comfortable
with talking candidly about the elephant in the room. Plus, it makes for great
opportunities for some dark humor.
We arrived
at the Kaiser Lonetree facility, checked in and were sent upstairs for a glucose
test. But when my number was called, the tech told me that my scan had been
cancelled because the machine was broken. But it was working when they checked
me in, I said. Not her problem. Go away. Next! I went back downstairs where
the radiology receptionist confirmed that the machine had once again quit working – apparently
it had been on the fritz for several days. A technician would come out and
discover someone had tripped over the cord and unplugged it or tried to reheat a
leftover turkey sandwich or put another quarter in the slot or whatever. Could
they reschedule me for another day? No, I flew here specifically for this scan
and was flying out tonight. Not her problem. Go away. Next! But I didn’t go away.
I asked her call the other Kaiser facilities in Denver that had PET machines
and see if they could work me in. Instead she gave me the number of her boss,
then got up and walked away.
After
peeling my jaw off the floor, I called the boss and got a generic voice
mail. Halfway through my blunt message it dawned on me that this was probably
not an actual Kaiser employee, but likely an ex-boyfriend of the receptionist.
I ended the message, shoulder surfed into the locked offices behind the receptionist,
walked into the scheduling office, sat down and explained my situation to the
surprised employee. I asked her to call the other Kaiser facilities and get me
worked into their schedule for today. She said she's try and I said I'd sit and wait. Downtown Denver couldn’t do it, but the Lafayette
office north of Denver could get me in at 5 pm. Great, I said. But the
Lafayette office said that I’d have to be there by 4 to get the FDG contrast,
and there wasn’t time since it was an hour’s drive and it was already past 3.
Give me the contrast here I said. She said she couldn’t do that. Call your
pharmacy and ask I said. She called the pharmacy. Yes, they would do it. I asked
her to call the lab and authorize the glucose test, and that I expected
the contrast to be ready when I got back. And it was. Sometimes you just need
to be persistent in your self-advocacy.
Kirsten
drove me up to Lafayette on the north end of Denver, and I was immediately
walked back to the scanner, laid on the table, and nuked. Kirsten and I chatted about
wedding planning as the tech burned two disks with the scan images, then were on
our way. Since I hadn’t eaten at all, Kirsten took me to Brothers barbecue
where we each ordered the two meat platters. There is something about eating
good barbecue with your adult kid that warms the heart. Or maybe it was the
spicy sauce. But having my daughter accompany me for the day made the madness
worthwhile. I flew back to SLC and arrived in Huntsville at 1 am this morning.
After awaking, I emailed my Kaiser oncologist in Virginia about my having the scan, and asked
her to email me the reading once she received it. I also mailed to Dr. Apolo one
of the disks of the scan. I’ve scheduled a meeting with her for December 10.
This
evening, I received a response from my Kaiser doctor. The scan results were unexpected.
The radiologist did not fund any tumor in my lungs (“No
developing pulmonary nodule”).
However, the radiologist did not compare this scan to the October scan that
showed the lung tumor, but instead compared it to my scan in July of this year
that showed no pulmonary tumor, but suggested I’d had a complete response from my outbreak of mets in April. So I’m skeptical. I’ve asked my Virginia-based
Kaiser oncologist to request a reinterpretation, comparing it to the October
scan.
The Colorado
radiologist did find two other suspicious tumors, however: First, a “solitary
enlarged prevascular mediastinal lymph node image 58 measures 1.3 cm with SUV
max of 5.1 compared with 1 cm with SUV max of 3.2 which is suspicious for a
metastasis.” Something is going on there. Second, "12 mm transverse diameter
hypoattenuation right lobe of the thyroid demonstrates low-level metabolic
activity with SUV max of 2.4, unchanged.” My thyroid has been previously examined
and found to be benign, so I’m not too worried about that.
I’ve emailed three of the clinical oncologists who are
following my case (Dr. Ferrera with Kaiser in Northern Virginia, Dr. Apolo with
NIH NCI in Bethesda, and Dr. Hahn with Johns Hopkins in Baltimore), and asked
for their thoughts. The suggestion that my lung tumor has simply disappeared
seems too remarkable to believe, so I’m asking for verification. I’d assumed
that I’d be entering a clinical trial in January, but if the scan reading is
accurate, then perhaps I can postpone that and instead look forward to dancing
with my daughter at her wedding.
Wednesday, November 14, 2018
Infusion 54 and thought avoidance
I’ve spent the past few weeks mostly not thinking about the metastatic
tumor in the upper right lobe of my lung, with tendrils creeping out like kudzu,
sucking the life force from the adjoining cells and feeding the malignancy. I
have tried to ignore the knowledge that this new carcinoma likely lacks the
PD-1/PD-L1 connection that has allowed my monthly of infusions nivolumab to
enable the T cells in my immune system to strip the camouflage from, then
consume, the tumors in my lymphatic system. I do not dwell on the likelihood
that each day thousands of new cancer cells are colonizing in my bronchial
tubes. I disregard the data that suggests the average life span of a person who
has metastatic solid tumors in their organs is less than a year. I try to not
think about these unpleasant facts.
Instead, I try to live each day as joyfully as I can. I
visit Jennifer once or twice a day in the hospital, where for the past month she
has been receiving treatment for her cognitive issues, and am grateful that I can
see her, hold her hand, and tell her that I love her. I read books with my
grandchildren. I continue to churn through my book list (most recently, The Coldest Winter, by David Halberstam; The Battle of Arnhem, by David Beevor; Dereliction of Duty, by H.R. McMaster; Leonardo da Vinci, by Walter Isaacson; Lincoln at the Bardo, by George Saunders). I visit with family. I sort through the remaining
residue of my life’s accumulations, curiously pleased when I can empty another
box. I look forward to skiing this winter, slowly acquiring the necessary gear.
A small voice sometimes whispers that I probably won’t be skiing as much as I
would like, but I let that sour thought dissipate like a fart in the wind. Sometimes
the preparations are more pleasing than the performance.
On Monday night I flew from Utah to DC, and slept in my
almost empty house. Yesterday I went in for my labs, then went to lunch with
Spencer. He’s working (and mostly living) at a residential treatment center for
college-aged kids in rehab, and is getting his firefighter certifications. It’s
good to see him carving out a place in the world. Kirsten received a job offer doing
social work in the Denver area, and she and her boyfriend are talking about
tying the knot. A few weeks ago they flow to Utah and we had a long
conversation about the possibility of his joining the family. I guess my
cleaning my Glock while we talked didn’t dissuade him. I wish them every
happiness. I speak with Garrett each Sunday and hear about his life lessons
while at Carnegie Mellon. I am grateful that my children allow me to share in
their joys and sorrows.
Yesterday afternoon I met with two curators at Dumbarton Oaks, a DC museum that has a specialty in pre-Columbian artifacts. I brought
with me a dozen pieces of ancient Peruvian pottery that had been given to me
over two decades ago by my late stepmother. She told me that the artifacts had
been discovered by her first husband in the 1950s while he was working as an
engineer on a construction project in Peru. He told her that he barely had time
to grab the pottery before the site was bulldozed. They have been sitting in my
garage ever since.
I first tried contacting the Peruvian embassy, but no one seemed
interested. I tried the Smithsonian, but was told they had strict conditions and
likely would not accept them. I found similar pieces that were being offered by
dealers for anywhere from $300 over $1000 each. One dealer offered me $3000 for
the lot based solely on my photos. I preferred that the items be professional
curated, and eventually I was referred to the curators at Dumbarton Oaks. They carefully
unwrapped the pieces, documenting each step. They could not promise to take
them into their collection, but said that if they could not, they would refer
me to other museums that might be interested. I’m not interested in the money;
rather, I’d like to see them displayed. I’m just trying to do the right thing.
This morning I met with the handyman who has been working on
my Great Falls house to review his never-ending list of projects. I also met
with my realtor, so we could re-list the house. I’m more than ready to have it
sold.
This afternoon I had my 54th Opdivo infusion. As
usual, it was routine. I spoke with the nurse about the new mets, and how I likely
will be entering a new clinical trial in January. Those decisions will be
driven by the results of my PET scan in 4 weeks. I try to not think about it,
and instead think about snow.
Subscribe to:
Posts (Atom)