Awkward Times

Team Miner,

This post is brought to you by the letter M.  Specifically, Mariko, who lent me this computer upon which I am typing (my laptop is currently out of commission) and Megan, with whom I got to hang out and chat with last night.  Both lovely ladies (and Brent) fed me and the girls (and Grandma Robin) yesterday as well, so thanks guys!  I owe you both.  And thanks to everyone else who has been helping us through the latest round of chemo and visiting Jeff.

Speaking of Jeff, he is doing pretty well.  Once again, the oncologists have escalated his doses of chemo.  He is seriously one tough cookie.  This amounts to three escalations, one for each round of chemo, past the initial one, thus far.  In terms of Jeff's general health, physical strength, and cancer-fighting prowess, this is a good thing.  I will confess, however, that every time the dosage rises I worry about how he will feel when he gets home. 

And this time around I am especially anxious for Jeff to come home and I'm worried about when he comes home. I haven't seen him since Friday because Lydia came down with her first little cold yesterday.  She's doing pretty well, but looks rather sick.  I believe this is because she used to have a clogged tear duct.  It magically resolved on its own right around the time Jeff entered the hospital upon diagnosis.  But her eye tends to rear its old nasty goopiness anytime she is even slightly congested, so the girl looks a little rough and weepy right now.  Due to her sniffle and the conspicuous eye boogers, she needs to stay away from the hospital.  I need to stay with her.  So, we are separated from Jeff again.  Thankfully Grandma Robin is here so she can hang with Jeff.  Please send Lydia and the rest of us virus-killing, "get well" vibes so that we are healthy and don't make Jeff sick when he returns home immuno-compromised.

With that update taken care of, I'll address the reason for the title of this post and why I have felt like Debbie Downer this weekend and on a relatively regular basis.

By now, months into this lymphoma battle, most everyone I know is in the loop about what's going on with our family.  Almost every person I see on a regular basis either talks to me frequently, or reads the blog.  Every so often though, I'll run into someone I haven't seen in several months.  Usually the conversation starts with congratulations on Lydia, which is lovely, of course.  And then I'm asked how things are going.  I guess I could just deflect and try to make small talk, but that seems even more awkward, so I mention that Jeff has lymphoma.  Cue the sad trumpet noise.  Womp womp.  

The worst incidence of this phenomenon occurred at our neighborhood coffee shop a few weeks ago.  I saw a person I hadn't seen in some time and noticed that his beloved dog - a dog I actually quite admire and enjoy (which is saying something for me because I am NOT a pet person) - was not with him.  I asked what was up and learned that the dog has cancer.  Ugh.  So terrible.

Then, of course, when I was asked about how we are doing, I mentioned that Jeff has cancer.  Sucks.  I didn't mean to sound at all like - "Well, you think your life is tough?  My HUSBAND has cancer." - but that's kind of how it came out, regardless of my best intentions.  It's just... awkward.  That's all.

So, I will leave the awkwardness there and go clean the Nose Frida, which given Lydia's snottiness, is also saving the day around these parts as of late.

Katina

Something Lawyerly Pays Off and a Word from Our Jeff

Team Miner:

Here at Chez Miner, we often talk up the amazing awesomeness of science to Stella. Our hope is that she and her little sister come to love science and veer away from, say, history and/or the law and towards something more scientific - like physics or chemistry or medicine - for their careers. We want humanistically-inclined engineers, not humanists. Think Robert Oppenheimer without the morally-questionable scientific achievements.

For all the scientific glorification that we engage in daily, today some of my legal training paid off in a surprisingly medical context. This afternoon we had an appointment with Jeff's oncologist. More on that in a minute. While we were waiting to meet with her, Jeff took a look at his medical charts online and found a new set of test results. The results initially looked alarming and caused him some concern about cytotoxicity and other scary sounding things. Jeff, I think, didn't want to freak *me* out, so he quietly researched these terms on his iPad while I walked around with Lydia snoozing in the Ergo until I sat down and saw what he was doing.

And - victory for me - being an anal litigator causes me to read most everything carefully and to read  documents in their entirety.  Especially medical records. So, I had already caught sight of these terms when I had read previous lab results and knew that they were nothing new. We confirmed that everything was ok with the doctor anyway - the results are from chemo and Neulasta - and I thanked my litigious (?) self for being (annoyingly) detail-oriented.

Now for the scoop on Jeff - written by... none other than the man himself. Take it away Jeff…

So far, everything is proceeding on schedule, and my body appears to be fairly resilient under the pressure of chemo. We have finished three rounds, and after each one (to date) I have received a dose escalation, meaning they haven't yet found the point at which the poison they're giving me totally wrecks my immune system. So I get more. If all goes well, the schedule for the rest of treatment looks about like this:
1. Round four of chemo to begin on Thursday and ending with a spinal tap to put chemo directly on my brain soothing spinal infusion.
2. A PET scan in early August before Round five of chemo that will hopefully come back negative for cancer activity - not no cancer, just no cancer big enough to detect with the scan
3. Two more rounds of chemo, whether or not the PET is negative, but no more soothing spinal infusions (rats!)
4. Two infusions of high-dose methotrexate, each lasting 4 days and occurring every two weeks

This last prize at the bottom of the Cracker Jack box was a new one today. The doctor had mentioned high-dose methotrexate, but had neglected to mention that it meant more hospital stays - effectively two extra rounds of chemo, which means that at the earliest I will be done in late September. If things aren't going as well...  well, things will go well, so we will cross that bridge when we come to it never cross that bridge, and so not discuss it. Irrational optimism. The doctor seems confident, and clearly has a plan for the next steps, but doesn't want to get into too many hypotheticals about what might or might not happen. Fair enough.

In more touchy-feely news, this last cycle was harder than the previous, largely because it's starting to get monotonous. There is little left to learn and few or no surprises about the hospital stay, my symptoms, or my treatment. This is good, I suppose, but I like learning things, and there is little new to engage my curiosity in the process at this point, just the same old horse pills, annoying symptoms and dull, unstructured hospital time punctuated by nurse's visits. Have I mentioned that they wake me twice to do my vital signs (breathing, heart rate, etc) during the night, every single night? It is a sign of how low my expectations are that I am grateful that they do this only every 4 hours instead of every two as they did on my first admission.

The girls are doing great, Katina is amazing, and we're keeping it together for the most part. Hopefully that will continue to be the case, although if my eyebrows fall out I may totally lose it, because people without eyebrows look kind of freaky.

Cheeseballs

The background picture on the blog is quite outdated.  This is one of the best we have of all four of us.  Grandpa Dave took it on 11 Long a couple of weeks ago, the Sunday of Pride weekend.  Stella's new haircut makes her look three and three-quarters going on 13.  Lydia is rather pensive, no?  Stella and I are sporting our Team Miner shirts, Jeff is wearing UCSF couture - Summer 2013, and Lydia was closest to being appropriately clad for Pride in her joyful, rainbow polka dots.  

Jeff succeeds in getting Stella to smile.

Leaning In

This is not (exactly) a post on the Sheryl Sandberg book. I can't really write about it in the first place since I haven't read it.  Despite not having read it, I have some strong opinions on the book.  Opinions I am brazenly going to share just for the heck of it.  They may well be misinformed, but they come from a deep-seated skepticism about taking life or career advice from über-privileged, super-successful wonder woman types.  This comes from believing that we (that is, me and Sandberg) are not similarly situated, that her advice is (probably) not attuned to my real life issues - much less the issues faced by middle or low-wage working women- and more importantly, that I just don't want the same things as her. I also agree with many critiques of her book which point out that by putting the onus on individuals to "make change" in their work lives, she fails to challenge systemic structures that hold women back in the workplace. 

So, as I understand it from not reading the book, Sandberg tells women to "lean in" to their work, channel their ambition, and just "go for it" at their jobs instead of making accommodations to achieve (the ever-elusive) work-life balance. I may be mistaken, but it sounds to me that the "leaning in" she advocates is primarily, or maybe entirely, career-focused. 

Now that I'm a couple of paragraphs in to this post, you may be wondering why I even mentioned "leaning in" since I really have nothing new or unique to say about a book I haven't even read.  Well, I was listening to another Tara Brach talk on a walk down to the bay shore with Lydia earlier this week.  Tara (confession: I think of her on a first name basis now) was talking about how we all "instinctively armor against the fear of loss."  By blocking out the rawness of our deepest fears and anxieties, we wall off our heart. Tara explained, more eloquently than I can, that we have to "lean in" to that pain.  We have to let ourselves feel it and let down our resistance to any form of inner discomfort so we can actually respond to ourselves and others with compassion.  I guess it hearkens back to the old spiritual I reflected on earlier: we have to actually walk that lonesome valley.

Through all this, I'm learning that it is utterly unproductive to suppress how I am feeling, to bottle things up, or to shy away from uncomfortable truths.  This introspective "leaning in," which I believe actually takes more courage than asking for a better parking spot at work or even a raise or promotion, is the type I want to practice and master. 

Food Trucks, Four Dollar Lattes, and Food Stamps

Team Miner:  

First, regarding Jeff, I continue to learn yet more medical trivia through this process.  Since his dose escalated again during the last round of treatment, he felt worse last week and on into earlier this week than after previous chemo administrations.  One side effect was tachycardia (again).  This caused me some degree of concern because of (1) the tumor in his chest and because (2) the symptom of heart racing had abated almost immediately upon starting chemo.  

As it turns out, my Google wizardry combined with a most basic analysis of lab results, revealed that chemo often impacts not only white blood cell counts but also red blood cells, and, consequently, hemoglobin levels.  Jeff's hemoglobin was low.  Since red blood cells carry oxygen, apparently when you are anemic your heart has to work a bit harder to circulate it through your body.  So, medical research, for once, made me feel more calm and at ease and, best of all, Jeff is feeling better again now.  Yesterday afternoon we went for a walk up and over Potrero Hill and back again with Uncle Tom and Jeff felt good.  To my credit, I was walking with Lydia in the trusty Ergo carrier, but I felt his pace was zippy.

  

Now for some non-cancer related content.  I shared this WaPo article on Twitter earlier, so apologies for cross-posting content if I already indoctrinated some readers there.  This piece has had a huge impact on my inner thoughts lately, so I thought I would benefit from processing it in a bit more detail.

If you've read it already, this warning will come too late.  But this article, about a summertime lunch delivery bus to kids living in impoverished parts of Tennessee definitely made my eyes water.  I also found myself clenching my jaw and straining to not start shaking my fists in rage.  There are kids in Tennessee - and of course here in San Francisco and throughout this country - who aren't eating much at all in the summer because school is not in session and "there ain't no such thing as a free (school) lunch" when there's no school.  This ingenious, yet depressing, bus is delivering food to some such children in Tennessee and I know there are similar programs in place at libraries, Boys and Girls clubs, etc that are funneling some much needed nutrition to needy kids in my neck of the woods.  

But it makes my heart ache to know that there are babies getting fed sips of Mountain Dew when their formula runs out.  That young kids are taking care of their even younger siblings with no resources while their parents are at work in jobs that cannot even provide enough food.  

This vision of a summer - stuck in a trailer watching DVDs on repeat and eating whatever food can be scrounged up - is so very contrary to how I was blessed to be raised. My summer memories are of playing baseball with my dad and Uncle Stevie in the backyard.  Picking homegrown tomatoes.  Taking Chinese cooking, fishing, and French classes at the high school summer education program.  Swimming at the neighborhood wading pool.  Scooping vanilla ice cream into fresh-cut cantaloupe for dessert.  

Of course, my privileges, dietary and otherwise, did not stop as a kid.  This morning, I had fancy schmancy "quinoa oat cranberry millet blah blah blah" hot cereal for breakfast with a dollop of raw coconut butter.  The cereal is - I swear - made from artisan grains or some crap.  I just picked it up at Whole Foods on a whim.  Because I can.  

After dropping Stella off at preschool, Jeff and I got coffee and I had an aforementioned four dollar (well, $3.50) latte.  And for lunch - though this was probably good for Jeff's hemoglobin levels - we had ridiculously delicious, and pricey, cheeseburgers at Serpentine.  Here in our (demographic) part of San Francisco, we don't have USDA-sponsored food delivery buses.  People in our income bracket shell out top dollar to eat at fancy food trucks.  I love food trucks, don't get me wrong, but it is quite the contrast to think about events like "Off the Grid" here in the Bay as compared to the "bread truck" making the rounds in Appalachia.




I hate that I sometimes have to read articles like this to feel so damn fortunate to have received a top-notch education and to have a great job with excellent benefits which gives me the ability to care so well for myself, Jeff, and our daughters.  In the several days since I first read this article, every time I nurse Lydia, even during middle of the night feedings, I have remembered that I am lucky to be nursing her.  Lucky to be on maternity leave.  So lucky to be nourished enough to feed her so well that she is affectionately called "Thunder Thighs" and "Chunk-a-Lunk."  

I will refrain - mostly from lack of time - from delving into politics and harping on this topic any longer.  But I hope I can hold on to this feeling of gratefulness, at least for a little longer than usual.

Katina

Fingernails

Team Miner:  

I thought I'd just take a moment to publicly sing Jeff's praises.  I am really proud of him.  Every day he is bearing with some degree of physical challenges and fatigue.  Some days are better than others.  No matter the day, however, Jeff is facing it all with a lot of grace and a ton of courage.  

This morning, for instance, he looked at his fingernails and noticed that we could see something like tree rings on them.  Almost halfway up from his nail bed you can see an appreciable change in color.  We chalked it up to the chemo.  Like most everything else these days.  At first my Wikipedia research suggested that the symptom is called "Beau's lines," which made them sound rather romantic.  Upon further (minimal) research, I suspect they are the less winsome-sounding "Muehrcke's nails" or maybe "Mees' lines."

This change to his fingernails is a little thing.  As far as I know his fingernails are not causing him any pain.  But it is that kind of thing that I would probably obsess over if I were in his shoes.  Jeff, by contrast, has been really focused on taking this in stride, and I am glad to be a first-hand witness to him fighting such a good fight.  (Of course, I would rather not have to witness him going through this at all, but that goes without saying.)  

All this said, he is maybe (?) halfway done with chemo at this point.  We will know more after a PET scan before the fifth round of R-EPOCH.  It has been uplifting for me to see so many people supporting him, and I know he has really appreciated it as well.  Keep it coming amigos.

Love,

Katina