CR 189: 22nd infusion; insurance for 2016

I've found that the early appointments at Hopkins are far more likely to be on time or even early, as opposed to the later morning or afternoon appointments where delays are the norm. Today I left home before 7 am and rolled into the hospital in less than an hour, since there was relatively light traffic. My appointment with Dr. Hahn was routine. My rash continues to come and go; nothing serious. I mentioned how I recently had read a journal piece that he co-authored entitled "New Strategies in Bladder Cancer: A Second Coming for Immunotherapy". He said that it was a pleasure to publish a piece that had such broadly hopeful news.

While the pharmacy compounded my does of Opdivo, I got one of those 3 pound omelets that the Hopkins cafeteria is so adept at preparing. While I ate, I looked through the weekly list of new bladder cancer related postings on inspire.com, and added my comments to those questions that fell within my zone of experience. I frequently will get one-on-one follow-up questions, and am happy to share my experiences with fellow bladder cancer warriors and their caregivers. BC is one of the more complex cancers, and is the single most expensive cancer when measured on an average cost-per-patient, because the risk of recurrence is so high. It can take a while for those newly diagnosed to wrap their brains around their new reality.

My infusion was the fastest yet, probably because the nurse gave the pump 30 minutes to push the drug into my body instead of the usual hour. I was out the door by 11:30 am.

Meanwhile, I've spent much of past two weeks assessing my health insurance options for 2016. I recently have decided that I will take a disability retirement from my law firm. I have not been meaningfully practicing law for some time, and am at peace with the idea of retiring. I'm looking forward to spending the time that I have with those that I love. For the firm, my retirement helps make it slightly more nimble as it looks to merge with another firm. I've been grateful for the firm for carrying me since 2012, and in fairness I can't ask it to continue doing so, especially during this time of transition.

In considering my options for future health insurance, the most important criterion to me is that I am able to continue in my clinical trial through Johns Hopkins. I also need to ensure that my family has continual coverage. Cost is a lesser concern, although it is still relevant. I've determined at my options include 1) continuing with my firm's insurance through COBRA; 2) buying Obamacare health insurance through the health insurance marketplace; 3) activating my Medicare eligibility, and my family getting insurance through the marketplace; and 4) enrolling the whole family through GMU, where Jennifer, Spencer, and Kirsten are all enrolled. There are pros and cons to each, as well as a big difference in cost.

Option 1: By virtue of the federal COBRA law, I have the legal right to continue buying health insurance through my law firm for up to 29 months after my retirement. I get an extra 11 months since I am considered totally disabled by the federal government as a result of my mets BC. Continuing with the firm's health insurance through COBRA does not make the insurance more expensive, since as a partner I was paying full freight anyway. I was nevertheless surprised to learn how much our firm's premiums would increase in 2016, however: family coverage for UHC's Choice Plus would run more than $2500/month. While expensive, this option would ensure that I would have continuity of coverage.

The greater risk, however, is that my law firm is acquired by another firm.  If that happens, then my firm likely would be legally dissolved. An employer that is no longer in business does not have an obligation to provide health insurance under COBRA. Whether that would happen with my firm is out of my control, so I feel obligated to examine my alternatives.

Option 2: Obamacare for everyone in the family. I've now determined that this is not an option, because I am eligible for Medicare, which rules out my getting Obamacare.

Option 3: Medicare for me, and Obamacare for the family. Exploring this option has forced me to do a deep dive into Medicare. After a good deal of research and a number of phone calls with both Medicare and the Social Security Administration, I have verified that I can activate Medicare outside of the normal enrollment periods, since my retirement constitutes a "special enrollment period." I activate Parts A and B of Medicare by sending to SSA a one page enrollment form, along with a certification from my law firm on Form CMS-L564. I also have been told that there are no Medicare Advantage plans in Fairfax, Virginia (my home county and state) that cover Johns Hopkins Hospital in Baltimore, Maryland. Original Medicare does cover Hopkins, however, and would ensure my continued participation in my clinical trial. Part B will cost about $120/month. I've tentatively decided that's the path that I am going to take, and put my Medicare enrollment forms in the mail this morning. I still need to figure out which prescription drug plan (Plan D) is best for me, but I can't sign up for that until I'm officially enrolled in Medicare.

As for the second half of the question -- Obamacare for the wife and kids -- I spent most of the drive up to Hopkins this morning on the phone with a representative from the health care marketplace, trying to find out the cost of health insurance in 2016 for them. The preliminary answer is that a "gold" plan (80/20 coverage) will run about $1100/month. Because my taxable income for 2016 likely will be limited to my SSDI income, my family would qualify for a $700/mo subsidy. I need to review the plan details some more, but this looks like a viable option. Their enrollment would not take effect until February 1, however, so it makes sense to pay for at least one month of COBRA coverage through my firm.

Option 4: Insurance through George Mason University. Jennifer, Spencer, and Kirsten all are students at GMU. The school offers health insurance for students.  For a single student from January-August 2016, it costs about $1600. For a student and two or more dependents, it costs about $5000 for the 8 month period. The scope of coverage looks similar to the Obamacare gold plan, and the net cost is slightly higher. But because Jennifer and Spencer are graduating in 2016, they would not be able to continue getting GMU insurance past August. So there is little reason to go down that pathway for such a short duration.

In sum, it looks like I'll exercise my COBRA rights for January 2016, then go with option 3 thereafter. Hopefully it all will work out.

After I finished at Hopkins, I went to my dentist for a crown and another filling. After spending the past couple of weeks studying my health insurance options, it actually felt good to numb my skull.    

CR 175: 21st infusion; health insurance questions

To work around the holidays, my biweekly Thursday appointments at Hopkins were moved to Tuesday (Dr. Hahn's clinic days are Tuesday and Thursday). I drove up to Baltimore at the crack of dawn for an 8:30 am vitals check, then met with the good doctor. I noted how the itching on the back of my neck and scalp had gotten more intense in the past couple of weeks, approaching the level of mosquito bites. He suggested topical ointments if it became unbearable, but I'm not yet at that point. I'm assuming the itching will come and go as it has before. He said to let him know if it got much worse, because that could be a sign of an autoimmune reaction. Other than that, everything was normal.

While the pharmacy was compounding my dose of Opdivo, I had breakfast in the Hopkins cafe. Their custom-made omelets are a good way to pass an hour. The infusion was routine. I'm glad my port is working properly.

After I was finished at Hopkins, I met with my insurance agent to review my life and disability coverage, as well as discuss options regarding health insurance in 2016. It looks like my law firm soon will be merging with a larger firm, and partners are bring asked to make a multi-year commitment to the new enterprise. I have been on full disability since late 2012 and barely working since then, and do not believe it would be fair to the new firm for me to make such a commitment going forward. As a result, I anticipate taking a formal disability retirement from my firm's partnership. I am grateful to my law partners for how they have supported me for the past few years.

The question is, where do I get my health insurance for 2016. As a law firm partner, I pay 100% of the cost of my family health insurance, which for 2015 is about $28,000. My currently law firm likely will be dissolved, and if that happens, there will be no entity that holds the obligation to provide health insurance through COBRA. I'm currently assessing whether the new firm will assume the COBRA obligations of my current firm, and if so, exercising that option likely will be the most seamless option. But it will also be the most expensive option.

Other options include my exercising my Medicare insurance. I have been Medicare eligible since October 2014, but have not exercised it since I was technically still employed and receiving insurance through my law firm. If I trigger that option, then I'd have to start paying my Part B costs, plus figure out whether I'd doing a Medicare Advantage plan, and if so, which one. That's a pain. Plus, Medicare covers just the individual; it would not provide insurance for the rest of my family.

For them, I could go into the health insurance marketplace set up by Obamacare and see what coverage I could get. I have been told that it's illegal for anyone to sell me insurance in the marketplace if I am Medicare eligible. But I've also been told that there is an exception to that rule, so I could participate in the marketplace, but I would not be eligible for any subsidies. 

Assessing all of these health insurance options gives me a headache. But at least I've got options, the tools to assess them, and the means to pay for the insurance. For that I am grateful.

After meeting with my insurance agent, I went to my dentist. Every time I go to a dentist I think of the scene in Marathon Man ("Is it safe?") I've gone to the dentist only once since I was diagnosed in 2011, thinking that I'd probably die before I needed a root canal. But now that there is a chance that I might live with metastatic bladder cancer for longer than 5 years, and since I don't know what my dental insurance will be in 2016, I thought I might as well bite the bullet (so to speak) and find out why my rear molars occasionally hurt. It turns out that three of my 4 rear molars have large fillings that are cracked, chipped, and with some decay underneath. Two will need new fillings, and one will need a crown. I'll get one side done next week, and the other the week after. Having dental work done is a pretty tangible suggestion that I'm thinking I might live a little longer after all. I think it will be worth it.

CR 163: Infusion 20, Thanks giving

Another two weeks, another infusion. Since my appointment with Dr. Hahn was at 9 am, I left my home at 7 am, not knowing what rush-hour traffic would be like on the dreaded Washington Beltway. Today it was fine - no delays - so I arrived at 8:15 am. To my surprise, I was immediately called in for vitals, then my checkup with Dr. Hahn. I noted that I still had occasional itching around my neck and scalp, but not as much on my legs. My rash seems to wander around from week to week. I said how I had noticed that a seborrheic keratoses on my cheek (covered by my beard) recently seemed to have grown in size. Dr. Hahn doubted that that was related to the nivolumab, but offered a referral to dermatology to check it out. Everything else was routine - my labs were fine, as usual, and we're staying the course with treatments for the foreseeable future.

I was done by 8:30 am. Since my infusion was not scheduled until 10:30 am, I went to the Hopkins cafeteria and got an omelet made to order. The chef must have thought I looked wan, because I got a 3 pound monstrosity. I managed to do my duty, and needed no lunch. My infusion once again went much faster now that I do not need to provide vitals at the start, midpoint, and end.

During my infusion, I continued to devour N. K. Jemisin's new novel, The Fifth Season. I picked it up on Monday and finished it this afternoon. It's a remarkably original work that has earned a place on a number of best book lists of 2015. I'm now forced to wait for the next two books of the trilogy. Before that, I read The Wright Brothers by David McCullough, which was outstanding. Disappointing reads of late include Grisham's Rogue Lawyer (another lazy tell don't show polemic) and Ernest Cline's Armada (as unoriginal and boring as his Ready Player One was innovative and satisfying). I'm now reading The Only Ones by Carola Dibbell. Other books on my nightstand include Aurora by Kim Stanley Robinson and Geraldine Brooks' March.

On Thanksgiving day, my sons and I played in our church congregation's annual Turkey Bowl: two simultaneous games of touch football, one for young kids under age 12 or so, and the other for the older teens and adults. I think I was the oldest player on the field, and certainly was the one who ran the least. I mostly stood on the line of scrimmage, tried to block the occasional blitzer, and watch my boys and many friends have a good time. I thought of how at the Turkey Bowl four years earlier, I had just learned that I had bladder cancer. At the end of that game I walked with one of my good friends who was then serving as the leader of our lay ministry and told him about my diagnosis. His stunned reaction gave me the first insight that my journey might affect a circle much larger than my family. Over the past four years, I have gained a far deeper understanding of joy and sorrow than I previously could imagine.

The Sunday prior to this Thanksgiving, I was asked to give the opening prayer in our congregation's principal meeting. I concentrated on giving thanks for all the good in our lives. No requests, no favors, just gratitude. I spoke from the heart and recall very little of what I said. A number of people commented to me that they appreciated my focus on thanks giving. One member of the congregation later emailed:

I didn't want this day to pass by without thanking you for being you. Your prayer today in Sacrament Meeting touched  my heart deeply, and opened my soul to receive the words that were spoken in such a manner that I consider today to be a watershed moment in my life, and a day that I will reflect upon for the rest of my life. You and your family have been such a great influence in my life, and have given me joy, inspiration,  a lot of love, and a lot of laughter. Thank you, dear friend, for giving me insight and great hope. Have a wonderful Thanksgiving.

 I have found that a life filled with gratitude is a life filled with joy. And a life of joy is a life that brings us nearer to God.

CR Day 149: 19th Opdivo infusion

Today was one of my quickest infusion days at Hopkins: 3.5 hours from entry to exit. My labs were ready since I had my blood drawn on Tuesday (I spent most of yesterday at the FDA). Today I chatted with Dr. Hahn and two of his fellows - one from Brazil and the other from Portugal. I mentioned that I had attended the SITC conference on November 7, and learned just how quickly changing was the field of immunotherapy cancer research. Dr. Hahn had a conflict and was unable to attend the conference, but agreed that the field was white hot.

As part of his usual checkup, I said that I recently had noticed a light rash on my lower legs, especially around my calves. My legs badly itched as soon as I put them in a bathtub of hot water, or the hot tub, but otherwise were fine. He examined the rash carefully, and asked if I had a rash anywhere else. I replied that it did not think so, although at times I would catch myself scratching around my neck. He did not see any visible rash around my neck, and said that it could be nothing, or it could be an indicator that my body was beginning to react to the nivolumab. He urged me to let him know if the rash got any worse, or if my body showed any other unusual symptoms. Barring any toxicity issues, he said that he agreed that I should keep going with the treatments. I was already scheduled through December, so we scheduled infusions through the end of February.

I waited in the infusion waiting room for about an hour for a chair to open up, but once I was seated the drug was ready and waiting - a first! Better yet, the infusion nurse said that I was no longer required to have my vitals taken three times during the infusion.  My port was quickly accessed and  and in 70 minutes I was done.

Each day Jennifer and I give thanks that my cancer has retreated and that my life has been extended. Each day is a gift from God, and I try to live my life with an attitude of gratitude.

CR Day 148: FDA hearing; summary of my case

Today I gave testimony at a committee hearing at the Food and Drug Administration. The forum was the FDA's joint Cellular, Tissue, and Gene Therapies Advisory Committee (CTGTAC) and Oncologic Drugs Advisory Committee (ODAC) meeting. They were considering an application to approve a new drug named MCNA for non muscle invasive bladder cancer. Although I have not been treated with that particular drug, I was asked by BCAN's executive director, Monica Smith, to provide a brief statement of my journey with bladder cancer to illustrate the need for new drugs, and to remind the committee of the importance of their work. My statement followed Monica's statement, who spoke of the extent of bladder cancer and the fact that the FDA has not approved a significant new bladder cancer drug for nearly 30 years. 

For what it's worth, following is the outline that I prepared for my statement:

Name
Although I'm a patent attorney, I'm here as a BC patient. No financial relationship or compensation by any person or entity. 
Blogging re journey: search for Ken's Cancer Blog. About 350 entries, hundreds of thousand of views. No ads or compensation. BCAN volunteer. 

Diagnosed in Nov 2011 at age 49
Uro: BCG candidate if NMIBC
1st TURBT inconclusive for staging
Intense review of literature and consultations to know options
Second TURBT: MIBC, primary tumor T2b, plus 10 other tumors T1 and CIS. High grade micropappillary
Baseline CT and PET negative for mets
Concluded bladder could not be saved
Consensus: neoadjuvant GemCis chemo
CT after 3 rounds showed mets in multiple nodes

Discontinued chemo, rushed into surgery (RC with neo, prostectomy, 61 nodes)
Surgical pathology trifecta: upgrade to T3, andenocarcinoma in prostate, and 12 positive nodes
NCI SEER data show that 85% of mets BC die within 5 years.  
No established second line therapy
Enrolled in clinical trial sponsored by Dendreon but randomized into control group: watchful waiting. Ongoing neobladder issues (strictures, nocturnal incontinence, sleep deprivation). 

15 months later, distant mets found in supraclavicular node, confirmed by biopsy
Debate among treatment team re next therapy: 3 supported more chemo, 2 opposed
Commenced ddMVAC in Sept 2013. Discontinued after 3 rounds. Peripheral neuropathy. Mets stable for 9 more months. 
Distant mets resumed growth in fall 2014. While being evaluated for a clinical trial at NIH, CT scan found extensive PE. Treated with LMWH. 
By Jan of 2015, tumors were extensive, growing at >1 cm/month

Evaluated multiple immunotherapy trials, first mets BC patient in nivolumab trial at JHUH
Nivolumab (Opdivo) is an anti-PD1 drug being developed by BMS
After 6 rounds, CR, target tumors NED. 
As of 11/5, Largest non-target tumor is 7 mm on long axis. 
20th infusion tomorrow.  Protocol calls for up to 2 years of drug. 
Durability unknown.

I get lots of Q's through my blog and BCANs web site: crying need for new therapies
Not a doc. No medical advice. Encourage patients to be proactive, seek 2d opinions, look at clinical trials. 
Grateful to my health care team, researchers, pharma, NIH, and members of this committee. 
No position on MCNA. Many patients and their families rely and depend upon your work to evaluate and decide whether to approve new therapies. The need is great. 

Thank you. 

CR Day 139: Two videos explaining immunotherapy

From time to time I've been asked to explain how Opdivo (nivolumab) works. I usually mumble something about how the drug uses the body's immune system to attack cancers cells by using an anti-PD-L1 mechanism to defeat the cancer cell's defenses. Most people politely nod and have no idea what I'm talking about. Neither do I. But here are a couple of short videos that explain what's going on in lay terms. First, a whiteboard sketch from Dana Farber Cancer Institute. Second, a film from Cambridge University showing killer T cells attacking cancer. There are about 5 million T cells in each teaspoon of blood, and Opdivo gives them the ability to detect and kill cancer cells that previously were ignored because they didn't look like cancer cells. It's amazing to think about everything that is going on inside the human body. I'm glad that my clinical trial has been working n my cancer.

On Saturday, I attended a forum regarding recent advances in immunotherapy, and heard from doctors regarding the latest advancements in fighting cancer. I hope to post a more detailed summary, but their enthusiasm of how we are entering a new stage in defeating cancer was infectious. I am more hopeful now of my long-term prognosis than I ever have been since I was diagnosed with metastatic cancer. I am grateful to the ongoing research efforts and am glad that, by participating in a clinical trial, I might be helping others in the future.

CR Day 135: 18th infusion, clear CT

Today was another long day at Hopkins. Two hours each way in rush hour traffic. My port was easily accessed and gave a strong return of blood for my lab work -- whatever problems I had earlier in the year with a sheath growing over the tip have been resolved. I went upstairs for the CT scan and was told that someone had forgotten to obtain insurance company preapproval for today's scan. I could either wait for hours while Hopkins tried to get the approval; skip the scan; or sign a waiver that I would pay in case Hopkins could not get approval. I chose door 3, signed the form, and had the scan.

Insurance company approval is needed because, although I am in a clinical trial sponsored by Bristol-Myers Squibb, Hopkins still seeks insurance company payment for costs that are customary for ongoing monitoring of a metastatic patient. That apparently includes CT scans every 6 weeks, and the accompanying lab work and doctor's visits. Bristol-Myers apparently pays for the nivolumab drug and the associated costs to infuse it, as well as various supporting costs such as a portion of the salaries of the clinical trial nurse and other health care professionals. Running those trials is not cheap, and I am glad that I'm not having to pay for the drug. According to a recent Wall Street Journal article, the retail cost of Opdivo to treat metastatic melanoma is over $12,000 per month.

After the scan, I had to wait a couple of hours for the results to be read and my drug to be released from the pharmacy. I read the newspaper in the Hopkins cafeteria while I drank a couple of liters of Diet Coke to flush the radioactive contrast out of my kidneys. Eventually, I met with Dr. Park, one of Dr. Hahn's fellows, and put him through the paces while getting his views on the durability of nivolumab. He was not as up to date on the literature as I was, and took some time to do some searches and skim the latest articles before telling me that there was no data on point, and the best he could do was extrapolate from the same articles that I discussed in my post of two weeks ago. We also discussed how long I should continue with the trial, saying that I was of the view that I should ride this horse as long as it would carry me. He was inclined to agree, but said that we should discuss it with Dr. Hahn, who fortuitously entered soon thereafter. Dr. Hahn saw no reason to stop treatment, and said that, as long as there was no progression of disease, the only thing that I should keep in mind was the chance of toxicity, although the risks of that are relatively low, and this review suggests. 

I noted how I had noticed an increase in leaking from my neobladder at night, or any time I was in a horozontal position, for that matter. We discussed whether I should increase my dosage of imipramine, or try something else. Dr. Hahn said he wanted to discuss that with some of his colleagues, and I said that I would make a more conscious effort to track the frequency and circumstances of when my neobladder leaked.

Dr. Hahn said that the results of my CT scan of my neck, chest, abdomen and pelvis showed no change from my last scan in August: no evidence of disease, no inflamed nodes, no suspicious tumors. The pulmonary inflammation from my post-Africa infection had dissipated, and everything looked clear. Yay! I went up to the infusion center and had 377 ml of Opdivo pumped into my body, along with a liter of saline. When I reclined back, I started to leak. I smiled as I hurried to the bathroom, pulling along my infusion machine: I'd much rather deal with peeing my pants than dying of cancer.

CR Day 121: Infusion 17; research on nivolumab durability

Last night I stayed up until 1 am so I could finish reading Neal Stephenson's Seveneves, a cracking good yarn about efforts to preserve humanity following the destruction of Earth. Less than 5 hours later I got up after having wet my bed due to my malfunctioning neobladder. The 50 mg of imipramine that I take each night has helped to decrease the frequency of spontaneous nocturnal voiding, but it still happens enough for me to celebrate each night that I get an uninterrupted sleep. I keep a large waterproof mattress pad underneath my sheet to protect the mattress from stains and smells. After being jolted awake this morning, I quietly left the bedroom so as to not disturb Jennifer. I sat in the hot tub for an hour and saw several shooting stars, reminding me of the meteoric "hard rain" in Stephenson's book. I got out of the hot tub as dawn was breaking and left the top down to cool off as I started my drive to Baltimore.

While waiting for my appointment with Dr. Hahn, I researched the latest data regarding durability of nivolumab. Bristol-Myers has not yet published any data from my trial, or any other Opdivo trial specific to metastatic bladder cancer or other types of metastatic urothelial carcinoma (searches can be run here). Recently published results regarding nivolumab on other types of cancer have been equivocal. For example, an October 20, 2015 Up To Date review of recent advancements in oncology reported the nivolumab had shown promising results in metastatic melanoma and hepatocellular cancer. A September  25, 2015 item in the ASCO Post found that around 20% of heavily pretreated patients with non-small cell lung cancer (NSCLC) had an overall response to nivolumab, and the median duration of response to be about 17 months. Another September 2015 report of a different NSCLC study of nivolumab and ipilumab showed overall responses of between 13 and 39%, with zero complete responses and median progression-free survival of 5-10 months - results the authors called "deep: and "durable." An August 6, 2015 article in Oncology Targets Therapies reviewed the literature regarding nivolumab and metastatic melanoma and concluded that nivolumab was better than conventional chemotherapy, with longer overall response rates and longer durability. At BCAN's August 2015 Annual Think Tank on Bladder Cancer, Dr. Efstathiou summarized the current status of immunotherapy and bladder cancer, including recent nivolumab data.

Armed with this unsatisfactory data set, I asked Dr. Hahn for his views on the likely durability of my complete response to nivolumab. He readily conceded that there was no data directly on point. All we could do for now is to look to how nivolumab was working on other cancers (which is what I had been researching), as well as looking at data from other PD-1 drugs on mets bladder cancer (such as MPDL3280A). But none of that data sheds much light on how long I might have before my metastatic cancer returned. Dr. Hahn said that researchers generally assume that no drug that they are researching will "cure" cancer; instead, in multiple mutation cancers like mine, once the PD-1 avenue was blocked, the cancer likely would start growing using another mutation. But he hastened to add that there was no way to know if, or when, that might happen to me. He sympathized how I was adrift in a sea of uncertainty regarding the durability of my CR, and said that my experience would help inform others who come later. Time will tell.

We then reviewed some amendments to the clinical trial protocol. The most relevant one to me was a new option of voluntarily discontinuing treatment following a complete response, with the right to resume treatment if the cancer returned. If I was to discontinue my every-other-week pattern of infusions, I still would be closely monitored through checkups and CT scans every 6-8 weeks to see whether I had any latent side effects or whether the cancer was growing again. I was given a copy of the new protocol, and we agreed to talk about that option in on November 5 when I will have my next CT scan and infusion. I continued to mull over the yet-unanswered question of nivolumab durability while I received my infusion.

My literature review and questions to Dr. Hahn were prompted by discussions Jennifer and I have been having about the future. I'm slowly starting to lift my eyes to the possibility that I might live longer than the statistics suggested when I was first diagnosed with mets BC (e.g., 90-95% chance of dying by May 2017). But without any data on how others have fared using this therapy, I have no basis to form expectations for how long I may live. I certainly can't assume that I will fit into the conventional mortality tables for a 53 year old white male. According to the Wharton School's longevity calculator, which does not factor in cancer, I'm likely to live well into my 80's, and have only a 5% chance of dying before I'm 60. In fact, those statistics have been inverted for me for the past three and half years: a 5-10% chance that I'd see age 55, let alone age 60. It's now looking more likely that I'll make it to 55. Beyond then: who knows?

Not having an objective basis for my life expectancy continues to leave me wondering how I should make all sorts of decisions. Do I invest for short term protection or long term gains? Do I consider going back to work? Do we sell our lake house after it is rebuilt from the flood caused by a broken pipe? Next year, our nest may be empty. Do we downsize? Do Jennifer and I explore the idea of full-time missionary service for our church? Jennifer and I have kicked around these questions, and have not found an acceptable way to work towards the answers. One approach is, since we don't know what weight to give it, we pretend cancer is not a factor and talk about what we would do. That's led to some interesting discussions, but no resolutions. Time will tell.

median progression-free survival time of 4.9 to 10.6 month - See more at: http://www.cancernetwork.com/wclc-2015/first-line-nivolumab-ipilimumab-demonstrate-deep-durable-activity#sthash.sPfV7yHI.dpuf

median progression-free survival time of 4.9 to 10.6 month - See more at: http://www.cancernetwork.com/wclc-2015/first-line-nivolumab-ipilimumab-demonstrate-deep-durable-activity#sthash.sPfV7yHI.dpudepending upon the demonstrated deep and durable activity

CR Day 107: 16th Opdivo infusion; goodbye Xarelto

As usual, the day before my scheduled infusion, I went to the local Labcorp office for a blood draw. Theoretically, having the draw the day before should ensure that my lab work is in place so the Hopkins pharmacy can custom-make my dosage of nivolumab, which otherwise takes at least three hours to compound. Yesterday, however, the Labcorp tech failed to draw enough blood to do the CBC work. This meant that Hopkins had to do my blood work and I got to wait.

Dr. Hahn and I discussed whether I could discontinue Xarelto. It's been exactly a year since my pulmonary embolisms were serendipitously discovered at NIH when I was being evaluated for a clinical trial. There has been no evidence of further PE's in my last eight CT scans. My body is not currently burdened by any metastatic cancer, thereby decreasing the risk for PE recurrence. Dr. Hahn was comfortable with my stopping Xarelto, saying that the risks of DVT or PE were much lower. Plus, I'll be having regular CT scans for at least the next two years through the clinical trial, so the risk of having an undetected recurrence is virtually nil.

Three hours later, my drug was released and I had my sixteenth infusion. I get my infusions sitting next to patients getting chemotherapy, and as I looked at the bald heads and gaunt frames, it seemed like a lifetime ago that I was one of those patients. In fact, it was only two years ago that I was suffering through ddMVAC. I hope that immunotherapy will replace chemotherapy, that the success rate will rise, the side effects will diminish, and more lives will be spared.

At least once a week, I review recent questions regarding bladder cancer at www.inspire.com and post responses. I focus on metastatic disease, where I have the most personal knowledge. I also have engaged in a number of one-on-one discussions with patients or their caregivers, and will on occasion point people to my prior blog entries where I have addressed the topic of their question. I also have been told by a number of patients that they have investigated and enrolled in immunotherapy clinical trials after reading of my good fortune. I'm grateful that others have been helped through my chronicles. When I started this blog, I had no idea what it would turn into. And I have no idea how long it will go.

Thirty six years ago, Dan Fogelberg released an album entitled Phoenix. The last song on the flip side of the record was titled, Along The Road. Recently I've thought about those lyrics in light of my journey with bladder cancer:

Joy at the start, fear in the journey
Joy in the coming home
A part of the heart gets lost in the learning
Somewhere along the road

Along the road your path may wander
A pilgrim's faith may fail
Absence makes the heart grow stronger
Darkness obscures the trail

Cursing the quest, courting disaster
Measureless nights forebode
Moments of rest, glimpses of laughter
Are treasured along the road

Along the road your steps may stumble
Your thoughts may start to stray
But through it all a heart held humble
Levels and lights your way

Dan Fogelberg died of metastatic prostate cancer in 2007, at age 56.

As for me, I can't say that my journey with bladder cancer started with joy, and certainly there has been fear along the way. But I have found many unexpected joys, and look forward to many more moments of rest and glimpses of laughter somewhere along the road.

CR Day 95: 15th Opdivo infusion

On Thursday I spent a good chunk of the day at Hopkins for my 15th infusion of nivolumab pursuant to my clinical trial protocol. Dr. Hahn was pleased to see that my long-lingering congestion had finally cleared up, and said that my bloodwork was perfect. As usual, it took the Hopkins pharmacy longer than promised to compound my custom-made sack of liquid, but I spent the time researching how to repair our various cars.

In the past few months, almost every motorized transportation device that we own seems to have quit working. All of our cars have over 100,000 miles, and are showing their age. Jennifer's Jetta needed a new transmission. Kirsten's Jeep needed a new clutch as well as a new master and slave cylinder. Spencer's Honda threw a rod and blew the engine; we replaced it with a used JDM VTEC. My Audi needed new CVT boots, valve covers, serpentine belt. On Thursday I learned it needed a new high pressure power power steering line. The mechanic explained that replacing the hose takes more than 10 hours of labor: remove the front bumper, radiator, wheel, hub, ball joint, and power steering pump. I think I'm done with all things Audi. Even the riding lawn mower has stopped working. And the boat down at Lake Anna needs a new engine, not that we have anywhere to stay since the lake house is down to the studs following the remediation for the water leak and mold. Life is good.

Everyone but me is back in school: Garrett is in his last year of high school, busy in marching band and worrying about college applications. Over the summer Kirsten moved back home, transferred to GMU, and changed her major from business to social work. Spencer is on track to graduate next year from GMU, and is thinking about getting his MSW. And Jennifer is finishing her MSW work at GMU. (Apparently karma requires three social workers in the family to offset all the damage that one lawyer has done.) Jennifer also is working 20+ hours a week with Life With Cancer, a non-profit largely funded by Inova Hospitals. She counsels patients and their families as they navigate the shoals of the sea of cancer. She's made of pretty stern stuff to do that.

With no job or school commitments, earlier this month I spent 10 days in Utah playing with my granddaughters. Rose and I read hundreds of books, had a Curious George binge party on Netflix, went to the train museum and parks, and celebrated her second birthday. Lily is 4 months old and is a roly-poly happy baby. I also visited with extended family, and enjoyed some long drives in the Wasatch Mountains. I grew up in those mountains, and each time I am in them my troubles seem to get a bit smaller, and my gratitude to God grows.

CR Day 78: 14th Opdivo infusion

Two weeks ago, I didn't get a nivolumab infusion because I had so much lung congestion. Dr. Hahn didn't think that I had pneumonitis, but decided that the safest option was to postpone the infusion and wait for the congestion to ease. The day after I started the Z-pak of antibiotics, I noticed at my mucus changed from green to clear -- a good sign. But after 10 days I still had a productive cough, and began to wonder if I was in the 3% of nivolumab patients who develop pneumonitis. I reviewed the recent literature regarding nivolumab and pneumonitis and was concerned enough to send the following email to Dr. Hahn:

An update before the Labor Day weekend: The good news is that the day after starting the Z-Pak, my bronchial mucus went from green to clear. The bad news is that I still have lung congestion and a productive cough, albeit not quite as bad as it was when I saw you last week. This type of lingering chest congestion is very unusual for me. I am wondering if I might be developing the type of anti–PD-1–related pneumonitis that has been observed in a few of patients treated with nivolumab, and as described in Dr. Nishino's July 16, 2015 JAMA letter. I'm scheduled to see you again on Tuesday, Sept. 8. Let me know if you want me to come in earlier in the day for another CT, have a pulmonologist consult, or whether I'm jumping at shadows. 

As it turned out, after I sent the email I noticed a significant drop in the amount of mucus in my lungs. So yesterday I braved the post Labor Day traffic around the DC beltway and made my way to Hopkins. My port was easily accessed and my labs were fine (although my glucose was a bit higher than usual, probably due to my mobile breakfast of blueberry pop tarts). I met with Dr. Hahn and Galina, the clinical trial nurse. Dr. Hahn was happy to hear of my recent improvement, but carefully listened to my lungs to verify the drop in congestion.  He didn't think that my congestion was pneumonitis caused by my Opdivo therapy, but instead likely was due to a combination of a bacterial and viral infection from Africa to which my body was unaccustomed. He said that he was ok with proceeding with today's infusion, but that I should immediately notify him if I noticed any increase in bronchial mucus. If that happened, he'd recommend that I start on a steroid and not have any additional nivolumab treatments until the lungs were completely clear. 

After a two and a half hour wait for the pharmacy to compound my drug, I laid down in the infusion chair and read a recent Grisham book (Calico Joe) during the infusion cycle. It's old hat by now, but nevertheless I am grateful for each infusion, thankful to the doctors, nurses, and techs who provide my care, and for the years of research and hundreds of millions of dollars of investment by Bristol-Myers, that have made possible the administering of this drug.

Tomorrow I am off to Utah to get some more granddaughter time: it will be Rose's second birthday, and I can't wait to read some books with her, and also hold little Lily. When I think of joy and rejoicing in my posterity, this is what it's all about.

CR Day 65: No Opdivo due to lung congestion

When I had my 13th infusion of nivolumab two weeks ago, I had told Dr. Hahn how I apparently had picked up a cold while flying home from Dubai. He asked me to let him know if my congestion had not gotten better in 7-10 days. Apparently, when nivolumab was first being tested in humans, some early patients developed there were some early problems with pneumonitis, including a couple of deaths. While no definitive link to nivolumab was established, doctors are instructed to keep a close watch on patients who have lung congestion.

Last weekend, I emailed Dr. Hahn and told him that I was still having congestion and a productive cough after 10 days. He scheduled me for another CT scan for this morning, and wanted to see the results before deciding whether I should get my scheduled infusion. The CT scan showed the same level of lung congestion as two weeks ago, with the nodules appearing to be an infection. No increase in size or number of nodules was seen. To be safe, however, Dr. Hahn said that he wanted to hold off on my next round of nivolumab until the infection cleared up. He gave me a scrip for a Z-pack of antibiotics, and we rescheduled my next infusion for Tuesday, September 8. At least I was able to return home ahead of DC's afternoon rush hour.

Meanwhile, I celebrated a quiet 53rd birthday with friends and family. Life's simple pleasures are really the best things. I am richly blessed.

CR Day 51: 13th Opdivo infusion; clear CT scan

Yesterday I received the results of Tuesday's CT scan: no evidence of pathological tumors was detected. The lymph nodes in my neck and shoulder that at the start of this year had been swollen with metastatic cancer now appear to be totally normal. Yay for nivolumab!

The CT scans did detect some nodules in my lungs. As I have had a history of pulmonary embolisms, Jennifer and I were concerned that those nodules might indicate a return of PE, especially because the scan was taken the same day that I landed from back-to-back red eye flights of 8 and 14 hours, respectively. On the second red eye, I apparently picked up a flu bug circulating in the plane, because yesterday morning I woke up with a sore throat, and it rapidly progressed to congestion, post-nasal drip, and a productive cough. Remembering how urgently NIH treated my PE last fall by insisting I immediately return to the hospital, at Jennifer's urging I called Dr. Hahn to see if the nodules required immediate action. He read the scans and said it would wait until today's appointment.

Upon arrival at Hopkins, I immediately donned a face mask and wore it the entire time I was at the hospital. I am ever aware of how other patients with compromised immune systems can suffer serious side effects from a common cold. I met with Dr. Hahn, and he told me that the nodules did not appear to be PE, and likely were related to the cold I had picked up on the flight home. He said that I could take the standard over the counter remedies for palliative care, and to notify him if the symptoms had not improved in a week.

We also discussed the high amount of blood in my urine that I saw while in Botswana. I told him that I had exchanged emails with Dr. Aragon-Ching, who supported my suspending Xarelto for a few days, then resuming the drug at half the dose I had been taking before (dropping from 20 mg to 10 mg). (Dr. Aragon-Ching also said that she was leaving GW to run the GU oncology program (geritourinary covers cancers of the bladder, prostate, kidney, and testicles) at Fairfax Inova, and suggested that Dr. Hahn assume her role as my clinical oncologist.) Dr. Hahn agreed with Dr. Aragon-Ching's recommendation to cut in half the Xarelto dose, and added that I likely could stop taking the blood thinner altogether in October if there was no evidence of either PE or any metastatic activity. He also was happy to be my clinician.

Dr. Hahn noted how more and more of his patients had mentioned my blog, and how some had exchanged notes with me. He said that he even had joined the blogosphere by writing on the BCAN web site about the recent ASCO meeting. I welcomed him to the 21st century with a fist bump.

I had my 13th infusion of nivolumab, which went just the way it was supposed to be - uneventful. I'm scheduled for treatments through the end of October, and expect that I will continue on past then until someone says enough. I've seen what good the drug has done, and with no adverse side effects, there seems to no reason to end the treatments, especially since I am a guinea pig for the thousands of patients who likely will be getting this revolutionary drug in the coming years.  

Vic Falls, Botswana, Dubai, and Hopkins

Monday August 3

Today was an unusually complex day of motion. We met for breakfast at 8 am in the hotel restaurant, then Jennifer and the kids took the 8:45 am shuttle to the airport with all of the bags to check into the 11 am British Airways flight to Livingstone, Zambia.  Meanwhile, the hotel's travel desk arranged for a driver to take me to the East Rand Mall, where last week we had left Spencer's glasses to be repaired. The plan was for me to arrive at the mall at 9 am when the optical store opened, have the driver wait while I ran in and got the new glasses, go to the airport, check in, then meet up with everyone else at the gate. Jennifer was concerned about this plan; she didn't want to fly to Zambia without me. I assured her that I would not miss the plane. The plan worked, except for the fact that the optical shop did not have Spencer's glasses. After a flurry of calls, they found them at another location. They promised to have someone drive over to the airport and hand them off. So I was off to the airport and met the family in the check-in line. After we dropped our bags, I sent everyone else to the gate while I waited for the driver. About 20 minutes later he showed up and handed me the new glasses. Success!

Unfortunately, Garrett belatedly realized that he had left his dental retainers and case in the hotel gym. We called the hotel and they sent someone to look for it, but nothing was found. They promised to mail it to us if it later turned up. Garrett wanted to go back to the hotel and look himself, but there just wasn't enough time. Except that our flight was delayed for more than an hour, so we would have had time had we known.

Taking the BA flight to Livingstone, Zambia was not our first choice, as our lodging was across the river in Victoria Falls, Zimbabwe. I had booked a nonstop flight from JNB to Victoria Falls on Fly Africa Zimbabwe (FAZ), but did not realize that FAZ flew only at night and under the radar. About a month ago, FAZ sent me an email saying that they had cancelled the flight on August 3 (with no additional explanation), and did I wish to change the day of travel to August 2 or August 4. Neither worked for us. They then offered a flight from JNB to Harare, the capital of Zimbabwe, then with an overnight in that garden spot before continuing on to Vic Falls.  That also was not acceptable. I did some research and learned that British Airways had a nonstop from JNB to Livingstone for about $50 more per person, which was considerably cheaper than the $350/pp requested by SAA for a flight from JNB to Vic Falls. So I told FAZ that I wanted a refund. After some hemming and hawing, I was told that the ticket was nonrefundable. In one of those rare occasions that having been a lawyer was actually personally useful, I requested to speak with a manager while I pulled up FAZ's contract of carriage. After less than 30 seconds of my quoting their own requirements to refund in full for cancelled flights, the manager promised that the refund would be issued within 24 hours, and it was.

That still left us with the problem of getting from the airport in Livingstone, Zambia to our B&B in Victoria Falls, Zimbabwe. The distance is less than 20 km by road, but in the long-standing African tradition of erecting as many barriers as possible so many hands can be greased, here's what we had to do: 1. After landing at LFA, walk down the stairs and across an active tarmac into immigration control. A visa to enter both Zambia and Zimbabwe was $50 US per person, cash only. 2. Claim our bags, pass though customs, which randomly select passengers to search their bags, unless a preemptive payment is made ($20 USD cash seemed to help end the search with alacrity). 3. Find a taxi willing to take 5 people and their luggage to the international border with Zimbabwe. We ended up taking 2 taxis, at $25 each. 4. At the border post, the Zambian official seemed offended that you are not staying longer in his country. Hope he is only in a bad mood and will not want to search your bags. Instead, he stamps your visa and passes you on your way. 5. Between the Zambian post and the Zimbabwean post is a road and bridge that is a 1.5 km no-mans land, mostly inhabited by 18 wheel trucks impatiently waiting for the appearance of the next official who can collect a bribe. We hapless tourists are directed to the "in between taxi" - a driver who thrives on this inefficiency by hauling people and their stuff the 1.5 miles to the Zimbabwe border checkpoint. The driver plus 5 people, 6 large bags and 5 backpacks, all in a car designed to carry 5 people and maybe 4 bags. We did it by having Kirsten lay across Jennifer and the boys in the back seat, me holding a bunch of bags in the front seat, and hoping that none of the other bags would fall out of the back hatch. We survive the trip over the river Styx, pay the in between driver (Charon) his fee of two silver coins ($5 US).  6. We are turned over to the next bureaucrat: the Zimbabwean border official. Already upset that we have paid $250 to the Zambians, we are told to start filling out forms. Another official overrules her, grabs our passports and stamps them, all the time smiling at my beautiful 20-year-old daughter. Unnerved by this courtship ritual, I grab our passports and usher my family out to the friendly confines of the next round of extortionate taxi drivers. 7. We commandeer 2 cabs for our persons and effects, and 4.2 km later we are at Lorrie's B&B. That leg cost only $5 per car. As we unloaded, a strange man started grabbing our bags and offering to help. Jennifer kept taking the bags away, saying "no thank you!" After the third attempt, the taxi driver mentioned that the man works for Lorrie, and really is here to help you. Well why didn't he say so? Welcome to Zimbabwe.

So we stumbled into Lorrie's a couple of hours later than planned, but little worse for the wear. Lorrie's B&B is a couple of kilometers away from the 4 block radius that comprises the Vic Falls downtown, and is set off in a quiet cul-de-sac. Lorrie's was the highest rated place to stay on TripAdvisor that had vacancies, was not a hostel, and for which the cost was less than $200 per person per night. (Vic Falls is a surprisingly expensive place.) We had reserved a 3 bedroom cottage, which turned out to be a 2 bedroom and another set of beds in the former dining room. The cottage was showing its age: the ceilings were peeling with evidence of water leaks; the furniture was ratty; the water heater was solar powered (great for the evening, not so much for the morning); there was no air conditioning (not that it was needed, as the high temperature was only in the mid 70's), however, an added benefit of a/c is that it creates a positive air pressure and makes it harder for mosquitos to get inside. Each bed had mosquito nets around it, and while the kids' beds had high rails allowing the net to hang like curtains, the bed for Jennifer and me had a single round hoop with a net that was supposed to be tucked around the mattress. For two nights Jennifer and I fought with the netting - it would come untucked and we'd find it draped across our faces, or one of us would go to the bathroom in the middle of the night and not be able to get out, or back in. On the third night we swapped beds with Kirsten and that was much better for us.

I had intended Vic Falls in general, and Lorrie's specifically, to be a place to rest and recharge - no schedule to keep, just touring one of the Seven Wonders of the World, doing some shopping, and eating good food. On those points, Vic Falls and Lorrie's exceeded our expectations. After our arrival on Monday afternoon, we dropped our bags, got situated, and then went into town for a couple of hours. Vic Falls is a tourism town, and the many shops are filled with a wide mix of stuff ranging from the high-end art to the routine tourist schlockenjunken. We were accosted at every step by street hawkers for hand carved wooden pieces, bracelets and other cheap jewelry, and Zimbabwean currency.  My friend, my friend . . .

To understand why people were selling Zimbabwean currency, one needs to understand the recent history of this sorry country. The British colony of Rhodesia was economically dominated by whites, which refused to grant voting rights to the black majority. The white minority government unilaterally declared its independence from Britain in 1965, but because it refused to grant suffrage to all, no countries recognized its independence, and for 15 years it was a pariah, fighting an insurgent guerrilla war with blacks agitating for power. In 1980, the white government finally ceded power, universal suffrage was granted, and the political party run by Robert Mugabe won the majority. Mugabe has turned into one of Africa's worst dictators, ruining the economy of what was one of the great African agricultural exporters. The Mugabe government’s response was to print more money, leading to one of the worst periods of hyperinflation in world history. In the early 2000s annual inflation was well over one million percent, and by the middle of 2008 the prices of goods doubled daily. The government resorted to printing bank notes of one million dollars, 10 million, 50 million, 100 million, 500 million, one billion, then 5, 10, 20, 50, 100, 200, and 500 billion dollars. It then started printing trillion dollar notes, in values of 1, 5, 10, 20, 50, and 100 trillion dollars. The economy crashed and a huge black market was created for goods and services in hard currencies. Meanwhile, the Mugabe government was manipulating elections and was under broad worldwide economic sanctions. In 2009, the Mugabe government finally abandoned the Zimbabwean dollar, adopting the U.S. dollar as its standard currency. The economy slowly has been improving since then, although it is still managed by incompetent and corrupt officials.

The worthless Zimbabwean million, billion and trillion dollar bank notes are now souvenirs of that period of economic insanity. Even before we crossed into Zimbabwe, I was approached by a hawker with 10, 20, and 50 billion dollar notes. I bought them for $1 (US) each, and gave one to each of my children, along with a brief lesson in macroeconomics and inflation. For the next two days, we constantly were approached by men seeking to sell these worthless notes, and it became a game of finding the highest value notes we could. I eventually purchased a 50 trillion note and a full set of the billion and million dollar notes for $13. I told the kids they could use that as gifts to their friends: presto, you're a billionaire!

Jennifer and the kids were shopping for more prosaic gifts, however. On the first afternoon in town, we fought through a scrum of street vendors and shop owners simply trying to approximate the goods and relative values. Even Kirsten, who loves to shop, was overwhelmed by how in-your-face the hawkers were. One guy was pushing bracelets as she and I stood beside a shop, waiting for the others to emerge. Despite our repeated "no thank yous" and turning away, he kept repeating "good price" in a quieter and quieter voice, until he was whispering. Kirsten finally burst out laughing and we walked away.  For the next few days, every now and then one of the kids would walk up to another and whisper "good price" as a laugh line. Garrett got into full bargaining mode, and assumed the role of negotiator in chief. He later calculated that he had achieved a discount of 41% from the asking price of the $160 of goods that we eventually acquired.

We retreated from our initial reconnaissance mission back to Lorrie's, where she had prepared a 3 course dinner for us. We then relaxed and, for the first time on this trip, had the time and energy to play some family card games.

Tuesday, August 4

I awoke before all the others, got breakfast, then set off in search of a place to do our accumulated laundry. I was advised that there were no Laundromats in Victoria Falls, and was taken to a commercial laundry facility run by a retired immigration official who had a large washer and dryer. I sorted our family's dirty clothes into machine dry and line dry, and asked how much to do it all. He said that he needed to weigh it and would tell me after. Sucker. Our bill was $100! I should have recognized the scam once I learned he had abandoned taking bribes in the Mugabe government for something that was more lucrative. Oh well, I'm doing my part to raise Zimbabwe's economy. 

The only must-do thing while at Victoria Falls is to actually see the waterfall. We caught a glimpse of it as we crossed the bridge from Zambia to Zimbabwe, but today we were going to spend the morning exploring the park. Victoria Falls, as I'm sure you remember, was "discovered" by Stanley Livingstone, the Scottish missionary, in 1855. Of course, the locals knew about the falls for centuries, but Livingstone's fervent description of the mile-long waterfall electrified the rest of the world. For tens of thousands of years, the Zambezi River had cut a series of gorges as it tumbles more than 100 meters. The current falls are the sixth gorge, and a seventh is slowly forming. Come back in 10,000 years to see it better. The water levels of the Zambezi in August are at the middle of the range, with the lowest being in November just before the rains begin, and the peak being in April.

The falls live up to all the florid descriptions given to it over the years. The Zambezi spreads out a mile wide, and then abruptly tumbles over the edge into a narrow chasm. The Zimbabwean park parallels most of the cliffs on the opposite side of the falls, and in places tourists (including yours truly) can stand or sit on the edge of the rocks and gaze more than 350 feet into the swirling torrents. It does give a sense of vertigo. We were constantly misted by the spray of the falls. It rebounded high above the gorge. In high waters, the mist and clouds of the falls can be seen for miles.

One of the activities that we had planned was visiting the Devil's Pool - a small and relatively calm body of water at the edge of Livingstone Island in the center of the falls, where foolhardy folk can sit or lay in the water inches from the point where it tumbles off the precipice. Unfortunately, all the slots for the three days that we were here had been booked (although I think Jennifer was secretly relieved to hear of this development). So instead, we watched from across the chasm as a group of a dozen fat white tourists were ushered into the pool by daring guides standing at the edge of waterfall.

After spending a couple of hours walking back and forth across the park, we returned to the park entrance and decided to have lunch at the cafe. It was an inspired choice, as we had one of the best meals of our vacation. We relaxed and visited and watched as a vervet monkey stole another diner's sandwich off his plate, and later, fries from another diner. We considered shopping, and decided that a nap was a better idea. We returned to Lorrie's and everyone promptly conked out. Now that's what I call a vacation!

At 4:30 pm, a shuttle bus picked us up for our next activity - a dinner cruise on the Zambezi River. We boarded a 50-foot one level boat and puttered around the wide river a couple of miles above the falls. A total of 11 diners, including our family of 5, saw elephants, hippo, and numerous birds. The sun slowly set, beautifully reflected off the river, and quickly plunging into night. A remarkably delicious dinner was served by candlelight, consisting of a spicy chicken compote appetizer, a choice of beef tenderloin or fish fillet, and for dessert, a sweet cake drenched in warm white sauce. That set the standard for the best meal so far. As an unexpected bonus, on the way home from the boat tour, the shuttle bus driver spotted an adult leopard sitting by a bush just off the road, not far from where people were walking along the road in the dark. Wow! We returned to the B&B sated, played games for a while, then turned in.

Wednesday, August 5

Today we had nothing scheduled for the day. We slept in, had a late breakfast, and headed into town at 10:30 for some shopping. I accompanied Kirsten and Spencer as they swooped into one shop, made their purchases, then called it quits. We relaxed in a local cafe (the "Chicken Inn") while Jenifer and Garrett bargained, cajoled, and eventually completed their transactions. We had a light lunch, then headed back to the B&B for R&R. More games, reading, napping, and researching about the souqs of Dubai, where we'll be in 5 days.

For dinner, we went to the Victoria Falls Hotel, the classic colonial-era edifice where British royalty, MPs, governors, bureaucrats, and members of the upper class stayed and dined. Things are much different today.  A nearly all-white crowd of diners was served a sumptuous buffet by the natives, and a group of drummers, singers, and dancers presented a program showing the traditional dances of the indigenous people. It was a fascinating presentation and the food was wonderful, but I was painfully aware of the racial divisions perpetuated by economic disparity.

Thursday, August 6

After one last breakfast courtesy of Lorrie and her staff, at 7:30 am we were met by a van and driver sent by Steenbok Safaris, our host for the next four days and three nights. Twenty miles west of Vic Falls, we crossed the border into Botswana. We had to pass through immigration control for both countries.  Botswana's visas were at no charge, unlike the univisa for Zimbabwe and Zambia. At the Botswana border, were met by Moabi, the owner of Steenbok Safaris. The Toyota van that he was driving was loaded with four tires in the back, and fitting in our bags was a challenge. As we loaded in, we noticed that the inside handle of the sliding door was broken, and most of the seat belts were missing. Jennifer, Kirsten and Garrett were immediately dubious, repeatedly asking me how I heard about Steenbok and was I sure. Spencer was ready to roll with it, and I just shrugged and said everything would be okay. As we drove towards Kasane, the city that acts as the gateway to Chobe National Park, Moabi told us a little about himself and his company.  He was born and raised in Kasane, had worked for other safari companies, and in 2006 started his own operation.

Moabi asked if we had towels for the bucket showers. I must have missed that, I said. He took us into Kasane and we bought some towels for 150 Botswanian dollars, which he said traded at about 10:1 to the dollar. Next to the shopping center was a trailer that acted as his operation base, and we met several of his employees, including a woman named Neo, with whom I had been exchanging emails. (I had assumed that Neo was male, based on nothing more than the Keanu Reeves character in the Matrix.) Moabi then stopped by his house - a humble cinder block structure with two warthogs rooting in the back yard. In the front yard was an old Steenbok Safaris truck, a dust covered Kia station wagon with no wheels or rear window, and various piles of stuff in the yard. I was reminded of my dad's various compounds in the 1970s as he was starting his rural telephone company, and was discomforted by the thought.

Moabi drove us up the hill and to the Chobe park entrance. The park was founded in 1960, people who lived along the Chobe River were relocated to Kasane, and the old dwellings demolished. There are no paved roads in the park - just a series of sandy dirt roads that might have been graded when the park was set up, but had not seen a blade since. At the entrance, we transferred to Steenbok's safari truck, a well-used Toyota pickup that had been heavily modified: the roof and rear of the cab had been cut off, bolted to the truck bed was a standard 3x3 set of safari seats with canopy, a diesel engine replaced the original gas engine; a home-made snorkel ran to the top of the windshield; a second fuel tank had been added; and when Moabi released the clutch, the transmission shuddered, reflecting the replacement of the clutch but not replacing or refinishing the flywheel. With more raised eyebrows from the kids, we clambered in as our bags were added to an already fully loaded trailer. It soon became clear that there was not enough room for us, our stuff, all the camping gear and food, and Moabi's two employees who would be responsible for running the camp. Moabi called for another truck, our load was redistributed, and off we went.

It soon became clear why the trailer could not be overloaded. In some places the roads were so deeply rutted that the trailer axle, even with its lighter load, was high centered. The soil in Chobe is very sandy, and sometimes the truck seemed to be swimming in the thick sand. Moabi would occasionally stop and shift his transfer case into low and we would crawl along. Third gear in low would move us at perhaps 10 mph. Once the ground got a bit more solid, Moabi would shift the transfer case into high. But I don't think that we ever went over 20 mph while in Chobe.

The winter landscape in Chobe is predominantly brown. This part of Africa has been in a three-year drought, and the rainy season ended four months ago. Parts of the land looked like the lunar surface, with scattered rocks standing on bare soil. Only the constant patches of the wooly capper bush -- the food of last resort for the herbivores -- showed evidence of life. In other places, many of the tall trees were dead from elephants removing all of the bark around their trunks, their branches like crooked fingers grasping at the sky. 

We arrived at our first campsite at about 2 pm. We would be tent camping in the bush - no fences or perimeter to keep the animals away. (I had been under the impression that there would be an armed guard at night, but Moabi laughed and said that was quite unnecessary.) Our camp area was named Boga, and we were in campsite no. 6. Moabi explained that we would be in this site only one night, as he was unable to book the same camp for 3 consecutive nights. We unloaded, had a quick lunch (bologna sandwiches) and while Moabi's assistants (two college interns studying ecotourism) set up the camp, we went on our first game drive.

Chobe is known for its high density of elephants - more than 98,000 were in the park according to the last census. And we had some magnificent elephant encounters on all three days that we did game drives. For example, on the first night, we drove along the Chobe River (which forms both the park boundary, and the border between Botswana and Namibia) and watched elephants approaching the water from both countries. 

Elephants drink a lot of water, and always seem to know where to find it. We also saw lots of giraffes, zebras, baboons, and of course, impalas. 

On the way back to camp, we came upon a group of safari vehicles - it seems that lions attract the same type of traffic jams in Botswana as they do in South Africa. All we could see was the heads of 3 lionesses as they lay and occasionally sat in the tall grass by the edge the water.  Soon there were 10 trucks crowded together. There was great excitement when one lioness got up, walked for 100 yards, and lay back down. We had more fun watching the tourists jostle for pictures than watching a boring cat do nothing. I don't get the obsession with lions. We soon moved on, and watched the sun set over the Chobe, glowing a brilliant red in the evening dust. 

Dinner was salad, pasta, and thick sausages. No braais in the park, apparently - everything was cooked over a propane stove. Weary from a day of travel, we soon turned to our three tents. Kirsten was nervous about sleeping by herself, and the boys weren't that excited about it either, so I volunteered to take the solo tent. Moabi had provided thin foam mattresses made up with sheets and a blanket, and laying down I remembered why I don't go camping more often. I do like a real mattress. I slept hard for 5 or 6 hours, then woke up at 2 am and could not go back to sleep. In that half-awake state of trying to go back to sleep, I listened to elephants talking, hyenas calling, and other sounds I could not identify. At 5 am, Moabi called for us to get up. The boys reported that they had heard sniffing around their tent, and Jennifer swore that she had heard an animal repeatedly spraying around her tent. We had barely managed to survive the night, apparently.

Friday, August 7

Moabi woke us up at 5 am for breakfast. Sunrise was just before 6 am, and he wanted to be on the road by then. We moved more slowly than usual, perhaps because we all were adjusting to sleeping on the ground. I did not feel particularly well-rested. The morning temperature was in the high 50s - warmer by 10-15 degrees than Kruger, but still chilly. I had neglected to tell Neo that we did not drink coffee or tea, so we did not have hot chocolate to warm our bodies. And a morning shower was simply not available - the camp bucket shower had not yet been set up. Breakfast was corn flakes or bran flakes, and bread with honey or peanut butter (or both).

We finally rolled out of camp at 6:45 am, blankets helping keep us warm in the open-sided safari truck. Moabi drove us east along the Chobe River. We saw plenty of elephants, giraffes, impalas, and baboons, as well as numerous fish eagles, the cousin of the bald eagle. 

Moabi took us to a watering hole up a valley, but there was nothing happening there. It was a strangely monotonous game drive as Moabi circled back along the same route we had taken yesterday and earlier this morning. At one stretch stop, Garrett asked Moabi why we were taking the same roads, and he replied that we would be taking different roads later in the day.

After our 5-hour morning drive, we came back to the Boga camp no. 6 at 11:45 am and found that another safari company was already setting up where our tents had been. Moabi's assistants had struck camp after we left, and were setting up in Boga camp no. 4. Moabi hooked up his trailer and we made our way to our new camp. Our butts were sore from all of the bouncing around on the bumpy dirt roads. We dozed around the fire while our tents were set up, then we all laid down for naps while lunch was prepared.

During our afternoon game drive, we had an elephant encounter to rival our being surrounded by elephants in Kruger. Just below the Ihaha camp, we started descending to the river when we saw a large group of elephants approaching. Moabi shut off the engine and we sat for nearly half an hour as more than 50 elephants passed in front, behind, and beside us, some no more than 10 feet from the car. Most of the elephants paused to study us briefly before deciding that we posed no threat. It was another magical time with those great creatures. 

After a dinner of salad, chicken, and pasta topped with minestrone soup (!), we went to bed. Once again, the kids reported sniffing sounds and various animal calls, and once again we lived to tell the tale.

Saturday, August 8

Moabi woke us up at 5:30 am. We ate our cereal half asleep. As the sun broke over the horizon, we saddled up for our morning game drive. Today he headed west along the Chobe River towards the Ngoma gate. The waterfront was quiet, with little game. We stopped and watched a baboon troop soak in the morning rays, grooming each other, the babies nursing, and the juveniles jumping on each other, then running away. We also saw more of the usual game - elephants, giraffes, kudus, impalas, mongeese, and lots of birds.

Upon return to camp for lunch, we saw that Moabi had set up the bucket shower. It was just what it sounds like: a silver tin bucket with a showerhead coming out of the bottom. There was a hose valve that you turned to allow the water to flow (more like trickle) out of the showerhead. A six-foot tall 4' square canvas enclosure provided privacy, and a small doormat kept some of the sand off your feet. For each shower, water was warmed on the fire, and then poured into the bucket along with some cold water to make for a pleasingly warm experience. It was nice to wash off two days worth of safari grit.

For the afternoon drive, we took the westbound river route again - it was never the same two times in a row. We saw some elephants coming down to the water and Moabi stopped and waited for them to come to us. After a few minutes, they passed within a few feet in front and behind us. One young bull stopped about 30 feet away from the side of the truck, studied us, and shook his head and flapped his ears - the first elephant warning. Elephants always give three warnings before they charge, so Moabi stayed put. After another moment or so, the bull shook his head again and charged towards us. Our heart rates surged and we were whispering "go, go," but Moabi made no motion to leave. About 10 feet away from us, the elephant stopped, stared at us for a while, then snorted and abruptly turned away and walked off. We let out our collective breath and smiled. Moabi knew his elephant signs. Later, we compared Neil's style with Moabi's, and Moabi said that the elephants in Kruger tend to be a bit more aggressive around humans, because they encounter so many more people, which means they encounter more stupid people. Most people in Chobe are either experienced game drivers or experienced self-drivers, and know how to respect elephants. 

As we were watching our last African sunset, Moabi sat up and said, "lion!" We then heard repeated lion roars and elephant trumpeting. Moabi turned around and drove toward the sounds, stopping frequently to get his bearings. Unfortunately for us, the sounds were coming from the bush where there were no roads. We could hear multiple lions roaring, and the higher pitched cries of lion cubs squealing. Elephant warning calls responded, as they likely were warning the lions to stay away. As the light faded, the calls quieted, and we returned to camp.

That night, Jennifer and the kids reported hearing more lion roars, elephant calls, hyena barking, as well as more sniffing around our tents. Camping in the bush is an adventure, but I slept through it all.

Sunday, August 9

Our last day in Africa. I woke up at 3 am, as I have each day while camping, tossed and turned until 5 am, then decided I might as well get up. I dressed, packed my bag, and went out by the fire. By 5:30 am Moabi was ready to start taking down the tents and breaking camp, so I woke up the others and they joined me by the fire as Moabi took down the tents and his helpers set out a breakfast of the left over food: scrambled eggs, some lunch meat, the last of the cold cereal, bread, peanut butter, honey, and a box of juice. By 7 am, we were ready to roll - our bags and Moabi's assistants, as well as some additional equipment, would be met by a second vehicle. Moabi hooked up the trailer and we rolled back out of the park, taking a couple of diversions to see some more game. At the park gate, Moabi met Neo and learned that she had not arranged for a vehicle to pick up the others and our bags. It was the only time we saw Moabi upset - "Leaving those kids in the bush!"

We arrived at Kasane just before 9 am. We were booked for a boat tour of the Chobe River at 9:30 am. I logged on to confirm that Fly By Night Air had not cancelled our flight from VFA to JNB, and was relieved to see that it was still on. Speaking of being relieved, the rest of the family walked over to the public toilets in the shopping center, only to learn that it cost 2 Kuna to get access, so they walked back and were given the coins by Moabi.

For our boat tour, we walked down to the river and boarded an 18' aluminum skiff with four rows of seats, and not a life vest in sight. A group of three Swedes joined us. It turned out to be an awesome ride. The captain brought us close to a wide variety of water birds, Cape buffaloes, waterbucks, a pod of hippos, and several crocodiles. One 12 footer was soaking in the sun as the captain slowly pulled forward. At about 5 feet, Kirsten and Garrett started saying "stop" but the captain kept going forward until he nudged the croc in the nose, making it jump up and splash into the water. "I thought it was plastic!" the captain exclaimed. Watching Kirsten, Garrett, and Jennifer jump away from the side of the boat was good for a nice laugh by Spencer and me. I decided then the captain was getting a good tip. 

Soon thereafter, we stopped to watch a family of elephants work up their courage to cross the river, with some infants noticeably reluctant to proceed. Eventually they all forded the river, the adults up to their eyes and the juveniles and infants swimming hard. By the time they reached the other bank, the infant was so tired it could hardly walk, and could not climb a two-foot rise. One of the adults - not its mother, who had been nursing it before the crossing, and was leading the way - came back, wrapped her trunk around the infant and guided it to a less steep way up the bank. We were touched by that display of caring. The kids remarked that the boat tour was as good as the game drives for animal sightings, and better yet, there were no bumpy roads to endure. It was a great way to end our African tour.

We returned to the dock and walked back to Steenbok's office to see Moabi unloading our bags and his two helpers. As soon as he had dropped us off, he had turned around to get them from the bush. He had told us that he was leading another game drive at 1:30 pm, so by the end of the day he will have spent nearly 12 hours behind the wheel. After a group photo and goodbyes, we grabbed some KFC to go and ate as we were driven to the Botswana/Zimbabwe border, where we would meet our van to take us to VFA. Clearing Botswana immigration was easy - 5 minutes, stamped passports, and we were on our way to the Zimbabwe post. We walked in to find it a madhouse - people crammed inside pushing and shoving, no order to the lines, no forms available. Eventually I got the forms and filled them out while being jostled in line, Kirsten reading the passport info to me. When I arrived at the immigration agent, he looked at our passports and said that, by leaving Zimbabwe for more than a day, our prior ($50) visas had expired, and we had to buy new visas. Because it was a single entry visa, however, he could sell them to us for $30 each, cash please. In all our travels, Zimbabwe is the only country we've encountered that charges for tourist visas. I handed over the cash and waited as he laboriously hand-wrote each visa and stuck it to our passports.

After nearly an hour, we were off to the airport. We arrived at 2:45 pm for our 4 pm flight, only to encounter a line snaking around the departure area to check bags. A sign announced that all passengers must check in 45 minutes before or their reservations would be cancelled. At 3:45, we finally got to the desk, and the agent took our bags, giving us hand-written boarding passes. We passed through the most cursory airport security I have ever seen - the bins were on top of the x-ray machine, and the agent was barely looking at the carry-on bag x-ray screen. I could have put a gun in a bin, put it on top of the x-ray machine, passed through, grabbed the bin, and no one would have noticed. No one cared that I had a full water bottle in my bag. I was selected to answer a tourist satisfaction survey for our most recent trip to Zimbabwe (about 90 minutes in all), and gave the country low marks for its extortionate visa fees and poorly-run airport, not to mention the ongoing evil of Mugabe's presence.

We boarded the aircraft, and only then did I learn that we were flying Fly Africa, a new low-cost airline like Spirit in the US, or Ryan Air or several others in Europe. Supposedly, Fly Africa charges for checked bags and more than one carry on, but we were not charged anything, probably because the queue was so long and the gate agents so harried. The Diet Coke on board cost $2, but since it was the first one I'd had since South Africa, it was (as my mom would sometimes employ a colorful Dutch phrase), "als een engel plassen op mijn tong" (like an angel peeing on my tongue).

We arrived at JNB at 6 pm. My itinerary said that our Emirates flight to Dubai left at 8:20 pm. That gave us 2:20 to clear immigration and customs, claim our bags from Fly Africa, rearrange our bags so we just had the stuff we needed for an 18-hour layover in Dubai, check in with Emirates Airlines, drop off our bags, clear immigration and customs, and get to our gate. As it turned out, it wasn't enough time. In particular, the Emirates line was moving at a glacial pace. I checked in using my iPhone while standing in line, allowing us to use the pre-checked in queue, but it made little difference. We got to the gate at 7:45 pm and by this time I was concerned that we would miss our flight. That's when it the agent said that our flight left at 22:20 (10:20 pm), not 20:20. I had made the mistake of mistranslating military time when I first booked the flight, had repeatedly written and remembered the time as 8:20, and had disregarded all later information about the actual flight time because I already knew when it left. At least my error worked in our favor.

But our adventure with Emirates was just beginning. Unlike our flight to South Africa, where I used miles for the whole family, I had to purchase the return flight tickets. I had shopped around, and found that the lowest prices meant that we could route either through Dubai, or London, or Rio de Janerio. Rio gave us no layover; London was a mandatory 15-hour layover, and Dubai gave us the option of no layover or an 18-hour layover. I polled the family, and all agreed that we might as well see Dubai, as long as we were there. Plus Emirates was the least expensive option by far.

But before we could see Dubai, we had to get our boarding passes. And before we get our boarding passes, Emirates requires that I show them the credit card that I used to purchase the tickets. I pulled out the three cards I brought with me on the trip, but none were the right card. Then I remembered that I had opened a Chase Sapphire Card to get the 70,000 bonus points to be used for the flights from South Africa, and after meeting the bonus threshold, put the card away with a note to cancel it before the first anniversary. The gate agent explained that, without the card, she could not issue our boarding passes. Perhaps we could call home and have someone find the card? No, I said, no one was at home. She then said that my only option was to cancel the tickets and buy new ones, and by the way, the price for each ticket had risen from $555 each to about $5000 each. I declined her reasonable suggestions and asked to speak with a supervisor. She said that a supervisor could do nothing more. I asked if she was refusing to call a supervisor. She paused, picked up the phone, and made several calls. She then said that she was going to go to the ticketing desk and see what she could do. I sent Jennifer to follow her, and soon she came back to get the passports. The agent soon returned and said that she had found a way around the requirement that she actually fondle the credit card used to buy the tickets, but it involved answering some more questions. Ask me your questions, bridge keeper, I’m not afraid, I thought. Q: what is your home address? Q: what is your first name? Q: what is your favorite color? I barely passed this rigorous security examination, avoided being blasted into the Gorge of Eternal Peril, and at 8:30 pm finally was issued our boarding passes. (Just kidding on the last question, by the way.) Moral: Never fly Emirates again.

We passed through South African immigration one last time. We showed Garrett's birth certificate one last time. We had time to get a real meal instead of whatever gruel they served the peasants in Economy. We had an 8-hour redeye to Dubai, plus a 2 hour time zone east, so we would land at 8:20 am. Our flight to DC left at 2:20 am the next morning, so we had 18 hours to explore how the fiefdom was spending its petrodollars. I had booked a room at the Hyatt Regency in Deira, near the souqs, so we first went there, showered, got breakfast, and reconnoitered. Spencer had not slept on the first leg of the flight, and opted to sleep. The rest of us set out on an Arab shopping adventure.

At 11 am, the temperature was already over 100 degrees, and the humidity was about 60%. We were soaked within minutes. Our goal was to wander through the souqs, the traditional Arab markets: the gold, spice, and textile markets on the Deira side, and the smorgasbord  on the Jumeriah side, divided by the Dubai canal. We were not looking for anything in particular, just looking. The good news is that we made more than a thousand friends. The bad new is that our new friends would not leave us alone. "My friend, come! Pashmina scarves! High quality silks! Watches! Rolex, Oyster, Tag, more! Come, look!" They were aggressive, incessant, and endless. Meanwhile we were sweating and getting increasingly weary of their hawking. Jennifer stopped to look at magnets, and we're swarmed liked hornbills on fresh elephant dung. Peck! Peck! Peck!

Garrett stop to look at t-shirts. The initial asking price was 160 AED - about $45 dollars. I laughed out loud and told Garrett that we were not buying that cheap shirt, let's go. But Garrett loves to bargain, and they engaged in warfare while I stepped away (I had the money, after all.) The merchant kept lowering his price, and Garrett kept saying how this was a cheap cotton shirt that was not worth that much. At 70 AED, Garrett walked out, and we headed to the canal. The merchant kept following, dropping his price: 60, then 50, then 40. He finally stomped back to his shop. Unknown to me, Garrett had been shooting for 40, and really wanted to get the shirt. I didn’t think that it was worth it, just wanted to find something cold to drink, so I churlishly gave Garrett 40 AED and he went back to do the deal. I'm not a fan of haggling. Not in my cultural blood. Give me fixed prices, Internet access, and Amazon Prime any day.

We took the water taxi across the canal (1 AED each), and saw the dhows moored 5 deep where goods were being unloaded 24/7. The city has been transformed in the past few decades, but in some places the old ways remain. The style of attire also varied widely: about 10% of the women were in full burqa, black, as if the Taliban were in control. Another 15-20% were in chadors, black, naturally. Of the rest, perhaps half had a scarf on or near their hair. The rest varied, from spaghetti straps to short shorts to t-shirts and knee length dresses or pants. The males had less variation -- 15-20% in traditional head to toe robes and headdresses (white, unlike their suffering wives), while everyone else was in traditional western attire. I have little patience for fundamental Muslim inequality, and all of the blathering about modesty is just another way of subjugating women.

In Jumeriah, we stumbled into a shop filled with a delightful hodgepodge of secondhand items: Mongol helmets, Arab swords, display cases filled with rings the size of a fist, hookahs, genie lamps, and all sorts of tarnished things to lift up and admire. Garrett found a box of obsolete coins and amused himself with trying to identify them (the price was based upon the size of the coin). Kirsten found some smaller rings. Jennifer browsed through small beaded bags and the like, and I would pick up various things and comment on them: a flaking leather Mongol g-string; wondering if airline security would have a problem with a two-headed battle axe; seeing which of the canes actually contained swords or daggers, etc.  The shop owner was in no mood to bargain, and was actually trying to shoo us out so she could close for her afternoon siesta. We paid 40 AED for some assorted treasures, then headed back to the hotel for some air-conditioned rest.

We had tickets for the 6 pm admission to the Burj Khalifa, the world's tallest structure, completed in 2010.

The building won best actor in one of the Mission Impossible films. It is connected to the Dubai Mall, an orgy of commercialism with over 1200 stores. Between the two is a huge fountain display, designed by the same people who did the Las Vagas Bellagio fountains. We walked passed a photo of an Emirate leader (Muhammed Ali Kileem dar Merkins) who envisioned this edifice, pictured gazing modestly into the future, near an inscription, "glory be to those who built it."  Subtle. Look how we can spend our oil money! We took the impressively smooth elevator to the lower observation deck on the 124th floor - going to the 148th floor cost an extra $30/pp each, and the visibility due to the blowing sand was limited to about 4 miles, so it wasn't worth it. We looked over the Emirate with its glut of high rises and architecture, and realized that Dubai was little more than Las Vegas east. We watched the fountain show from 1200 feet high, saw the sun set into the sandy haze, and I thanked God that I did not live here.


I think the rest of the family also was feeling ready to go home, because of the 160 eateries in the Mall, they chose California Pizza Kitchen. We had a relaxing meal, then bought a pack of Uno cards because we had packed our other cards in our checked luggage, went back to the hotel and played an Uno variation called Mao where the winner of the prior round gets to make a new rule that remains unknown are until it is broken. The more random the rule (e.g, make an animal sound when playing an odd red), the better. Keeping track of the rules (and enforcing them when someone else forgets) is the point of the game; winning the Uno game is incidental. Our games frequently were interrupted by people in the room next door playing loud music with the bass notes vibrating everything in our room. Calls to the front desk brought occasional quiet, but 5 minutes later it started back up. I was glad we were not staying the night.

Tuesday, August 11

We checked out at midnight -- the hotel comped the cost of the car to the airport as an apology for the loud guests in room 2012 -- and our departure was uncomplicated. Garrett had fun spending the remaining AED, returning with massive bars of gold (actually chocolate, although gold bars were sold at the Dubai Mall). I passed out Ambien and Lunesta, and everyone in the family managed to sleep for at least 8 hours on the 14-hour flight.  We landed at Dulles just before 9 am, passed US immigration and customs, claimed our bags and took a Suburban home. It's always good to come home.

This afternoon I'm headed up to Hopkins for lab work and a CT scan. On Thursday I'll have my next nivolumab infusion. I'll also talk to Dr. Hahn about the marked increase in gross hematuria in the past week. Ever since we entered Botswana and started bumping around a lot, I've had lots of bright red blood in my urine. I stopped taking the Xarelto for a couple of days, and it seemed to decrease a bit, but last night I resumed the Xarelto and the gross hematuria is back.  Xarelto can increase the chances of bleeding - it is a blood thinner designed to decrease the risk of pulmonary embolism - and on these long flights I wanted to do what I could to avoid DVT and PE by wearing compression stockings, walking around and getting the blood moving, and drinking lots of fluids. I'll also email Dr. Aragon Ching at GW to get her thoughts. Assuming the CT scan shows no PE (as it has since the start of this year), then perhaps I can discontinue the Xarelto.

Traveling has helped increase my gratitude for my access to high-quality medical care. In Kasane, Botswana there was only a small clinic. In South Africa, Neil spoke about how his mother was dying of metastatic breast cancer, that the chemo and radiation treatments had not worked (and cost lots of money), and there were no clinical trials available in the country. In Dubai, we saw multiple high-end clinics (including an entire section of the Dubai Mall) for the well-to-do from throughout the region, but strictly on a cash basis. I am grateful that I have high quality insurance through my law firm; that I can be treated by some of the best doctors in the world; and that I have access to clinical trials testing the newest and most innovative immunotherapies available anywhere in the world. This trip was made possible by nivolumab reversing my metastatic tumors; here's hoping that I can take many more family trips in the years to come.