Bland Update

Team Miner,

How's that for an exciting title? Just draws you in and makes you want to read more, no?

Well, it turns out that I am quite a bit busier than I expected working (part-time). I have a sneaking suspicion that these blog posts are going become more and more occasional with time. I have a lot of things to write about: just very little available time to do so.

But here's the update. Jeff's bone marrow is all recovered from the final round of R-EPOCH. He's feeling pretty good and has the white blood cell counts of a "normal" person. I think his hair is even starting to grow back. The oncologist has scheduled his last two rounds of chemo for October 3 and October 23, with the stated goal of having him done with treatment by Halloween. [Actual dates for these in-patient admissions are subject to change, as usual, but expect to receive an e-mail from the Lotsa site inviting you to visit Jeff in the hospital soon if you are part of that community.] 

Following these final rounds, he will have another PET scan, to be followed thereafter by PET scans every 6 months for two years, then followed by annual scans. If anyone knows a fabulous oncologist specializing in lymphoma at Vanderbilt, we'd love to hear about them...

In other news, we are in the process of sleep training Lydia. Never a dull moment chez Miner, just dull blog posts.  Womp womp.

Katina

Home Sweet (Chaotic, Messy) Home

Hi Team,

I had intended to post a slightly different version of this last night, but something went awry. Anyway, Jeff is home. Yippee! He was released from the hospital on Sunday afternoon. Nothing ever showed up in the cultures of his blood etc. to suggest that anything but a regular virus caused his initial fever. His mouth is starting to feel less awful, his blood counts are back to normal, and he looks a lot better. 

Today, home at last, Jeff took himself to the clinic, held down the fort (including grocery shopping and addressing a malfunctioning/aged out carbon monoxide detector), and picked up the girls from school and nanny share because... I made it back to work today. In an unprecedented and unexpected move, both girls decided it would be a perfect day to sleep until past 7 AM, so the morning was a little hectic and rushed. I knew that wrangling two children in the morning to two separate childcare locations would be challenging, but I think it will take even more forethought than I anticipated. We will figure it out with practice. Or maybe we won't. But, I'm confident we'll manage.

For me, coming back to work felt like a combination of the first day of school and Groundhog's Day. On the "first day" front, it was really nice to see my coworkers again. They even took me out to lunch and my wonderful secretary sent me flowers for my office. I also dressed up a bit for the first time in probably 8 months and wore shoes, not sneakers, and not sandals, which was an odd sensation after such a long time off from anything remotely business-y, or business casual. On a potentially related note, my hip is hurting again for the first time in a few days. Perhaps I will be back to flats just as soon as I graduated to heels?

As for Groundhog's Day, although my life has changed quite a bit - my husband had cancer, beat it, is still undergoing treatment for it, I had a new baby who is now nearly seven months, Jeff got a job, Stella switched preschool campuses etc. - virtually everything at the office is just as I left it. Physically, my desk looks the same - though cleaner than usual because my secretary also organized my mail and law book updates. In terms of work, all the same cases are still chugging along. I suppose I'll be plugged in and up and running full steam ahead pretty soon. I feel a little mentally rusty, but I think that will wane quickly as well.

I guess I am realizing that returning to work creates the illusion of a return to normal, but things in my personal life are just not quite there yet. Thus far, this year has certainly not turned out like I expected it to, but I am learning to appreciate each day for what it is, and acclimate to whatever the new normal will be. 

Katina

You Give Me Fever...

Good evening everyone,

Quick update. Jeff appears to be on the mend. His fever has been gone since last night and whatever was causing it must be responding to the antibiotic or antiviral meds coursing through his veins. His white blood cell counts are creeping up. So far all of the tests for various infections are coming back negative.  This is good.  It is also somewhat common in cases of febrile neutropenia.  About half the time someone undergoing chemo spikes a fever, the doctors cannot pinpoint a cause and it just resolves over time and with appropriate medical attention.

For tomorrow the docs will keep watching their cultures to see if anything specific turns up in terms of an infection.  Jeff will rest, drink Ensure, and eat a special, entirely pureed diet (his mouth still hurts quite a bit).  He's also currently on "airborne precautions" - which means everyone who enters his room gets to wear a combo mask/visor - so I'm thinking the girls and I will party in the vicinity of Potrero tomorrow.  They don't make these stylish accessories in sizes appropriate for babies.  Not even babies with massive noggins.

Assuming he continues to improve and remains fever-free for 48 hours, Jeff should return home on Sunday.  I'm cautiously optimistic.

Now for a parting (malfunctioning) "gif."

Katina

Arrgh!!

Team Miner,

Today started off pretty well for me.  Stella was a happy camper.  Lydia was her typically lovely self.  After dropping them off at school and with our nanny I listened to a great lecture on silence in meditation (funny topic for a lecture, eh?) on a lovely drive. The drive was en route to have brunch with Erika (and Linnea and Karina). Brunch was yummy, having a chance to catch up with Erika was delightful. To add to the self-care moments before I return to work next week I even stopped at Target on my way back. Total guilty pleasure for me.  I also went to Michael's and procured a glue gun to make new hair bows for the Stellameister. [I refrained from hitting any other Colma hot spots - such as Nordstrom Rack (or Sizzler?!) - so my self-control should be noted.] Nevertheless, with all of this, I was running late, and called Jeff.  Oddly, he was asleep and had been sleeping all morning.  And then I got home and found Jeff much more lethargic than usual, and feeling totally awful. I should have known that the awesome morning wouldn't last.

So, almost as soon as I came home and sent Jeff to the shower and made him a weird oatmeal/soy milk smoothie, Jinny and Bob (who have been most fantastic visitors!) took Jeff to the clinic for a regularly scheduled visit.  Turns out his blood counts are lower than ever, which explains the fatigue, and he has spiked a fever high enough to require his... admission to the hospital.

Poor Jeff.  

For back information here, in case some readers are unfamiliar, when a chemo patient is neutropenic (white blood cell counts are very low), their ability to ward off infection of any type is significantly compromised. Since Jeff is neutropenic at the moment due to the last round of chemo, this makes running a fever dangerous. To keep him safe and free of complications, the doctors are pumping him full of antibiotics and antivirals and fluids. They are also culturing his blood etc. to see if they can find the source of what's making him sick.

At the moment, Jeff is not feeling too bad. The fever has already gone down after they gave him some Tylenol. Bob has been keeping him company and Jinny helped me put the girls to sleep. Jeff even has a room to himself on the 13th floor. But of course, no matter how you slice it, this is crappy. So send Jeff's immune system some energy and vim and vigor. Allegedly he can come home when his blood counts improve or the fever resolves.  I will keep you all posted when we know more about what's going on. 

Now I'm off to shower and eat and attempt to sleep before one child or the other wakes me up.

Katina

How to Eat When Your Mouth Hurts - Some Unsolicited Tips

Dear Team,

Now that Jeff is done with R-EPOCH, I thought I'd write a post that might help other folks dealing with the scourge of chemo-induced mouth pain/mucositis.  Jeff is still in the throes of it, and I'm still testing recipes, so we're not quite ready for the big contest winner reveal, but STAY TUNED.  In due time.  In due time.

For the rest of this post, I've interviewed Jeff about what to eat when you have mucositis.*  I'm trying to pepper this post with phrases that will help cancer patients find appropriate things to eat when their mouth hurts thanks to chemotherapy.  Hopefully these two sentences will help the Google search engine algorithm point people here.  Now, for Jeff's input:  

First, and probably most importantly, is consistency.  When things are really bad, you need to get the ol' nutrients down the hatch without chewing, at all.  So "no chewing."  Also, things that are too soupy, are better than hard.  That said, it should not be too liquidy.  If it coats your mouth, or is insufficiently thick, it is actually harder to swallow and more uncomfortable to consume than if it is along the consistency lines of oatmeal > x = "sweet spot"  > chicken broth > anything crunchy.  In sum, it is time for gruel.  

"Please Sir, I want some more."

Second, it cannot irritate your mouth.  Anything acidic is no bueno.  Jeff once accidentally ate an Odwalla protein shake without looking at the ingredients.  Turns out the primary ingredient was orange juice and it burned like the dickens.  (Dickens, get it?)  Also, anything too spicy should be avoided.  Yet, at the same time, the strong smells that come along with heavily spiced food are often helpful.  While receiving chemo, taste is often altered.  When a food doesn't taste "right" hitting your taste buds, it has helped Jeff to have aromatic things to eat: yummy smelling purees and such things that basically override his wonky taste receptors.  For this reason, I have had more success with "warm," not "hot," spices like curry powder, or ginger. 

Lastly, some tips on caloric content.  Even with the most comfortable or easiest to eat foods, eating is a chore when your entire mouth hurts.  It can take Jeff an awfully long time to choke down a small bowl of food.  Mucositis also tends to hit when white blood cell counts are low. Low counts in and of themselves are exhausting so the thought of sitting up to eat bowl after bowl of something is not enticing when you feel so tired.  You just want to eat, in as effortless a manner as possible, a bowl of some calorically dense (yet tasty) mush.

If it sounds like all of these things are kind of hard to mesh and balance together, that's true. There probably is no "wünderfüd" for this predicament.  Jeff, ever the patient patient, says that this isn't necessarily a problem. Variety is good, so he has actually enjoyed trying new things.

We hope this helps someone else.  Down with mucositis!

Katina

*Standard disclaimer:  We are not doctors.  Jeff is not "every-patient."  Everyone has different experiences, different palates, etc.  For example, one of Jeff's hospital roommates, with virtually the exact same diagnosis, had horrible nausea from chemo and could hardly keep any food down.  Jeff hasn't been nauseated even once, but all this mouth pain SUCKS.  His roommate, fortunately, did not draw the mouth pain card AND the nausea card.  Also, some people get mouth pain and mouth sores even worse than what Jeff has experienced.  Ugh. Anyway, this is just a description of what sort of, kind of worked for Jeff.  

"Hips Don't Lie"

Team Miner, 

Jeff's home from the hospital - yay! He should never ever have to get another Neulasta shot ever - yay! It's actually and truly summer in SF - yay! Lydia is apparently teething again - meh. I have a torn labrum in my hip - boo! 

I guess I could end the post here, since that first paragraph sums it up, but I will explain a bit before I hit the hay. I'm a wee bit tired since Ms. L.M. Miner is sleeping quite a bit more fitfully than usual due to her current oral situation. 

I had my MRI on Thursday morning. It was a surprisingly pleasant experience. Jeff warned me that it requires lying very still in a tight space and that the machine is loud. I'm not claustrophobic, so I had no problem with the confined area. The tech gave me pretty serious noise-cancelling headphones, so the sounds, while loud, were of somewhat muted and mostly rhythmic clanging. The real upside of this procedure was that I had 45 minutes, totally alone, in which I closed my eyes, breathed deeply, and maybe even fell asleep for a second. What a gift! The technician on the way out joked that new moms could come in and book MRIs just to get a little shut eye. I'd seriously consider it if it were always in-network and covered.

"I never really knew that she could dance like this
She makes a man want to speak Spanish"

So, the result of the MRI is that the labrum in my left hip socket is indeed torn.  It's a tiny little vertical tear, less than a centimeter long.  We can't be sure of what caused it, but it probably wasn't playing professional football a la Percy Harvin.  I think we can safely rule that out.  

In my case, it may have been a combination of developing extra flexible hips from gymnastics as a kid as well as the rather violent, impact-heavy exercise involved in that sport, followed by a series of teen years in which I logged a lot of mileage running, all of which primed my collagen for a tear while pregnant and carrying extra weight/going through labor.  (The fact that a certain newborn's head is in the 94th percentile did not come up in my discussion with the chiropractor, but I'm not going to rule out the possibility of guilting her for that when she is, perhaps, ready to give birth to her own child several decades from now.)

I haven't decided exactly what to do next.  At the moment it seems inevitable that I'll have an arthroscopic procedure sometime before the end of this year. The surgery itself does not sound so bad, but the recovery can take a long time.  And my pain level is tolerable now, but I definitely feel quite sore by the end of the day and my ability to play on the floor with the kiddos is becoming a bit compromised.  My goal for now is to explore all my options, take it easy on the exercise front, and hold off on any surgery until Jeff is done with chemo and at a time that is convenient (ha!) for my life.  

Sparing you any pictures of hip arthroscopy, you can thank me now or later,

Katina

Onward and Upward

Hello Team:


[Apolgies for formatting issues. Can't find the wherewithal to "code" and fix them.] Jeff is trucking through his final round of R-EPOCH.  I looked back at some photos this evening from his initial, long stint at UCSF during his diagnosis/Round 1 back in May.  Lydia was tiny. Jeff had a beard and hair.  Of course, he also couldn't breathe well and all the lymphoma in his body was making him feel pretty horrible.  At night when he was in the hospital alone (well, surrounded by nurses and doctors), I was so nervous about him that I texted him throughout the night and even called occasionally to check in.  I hope he is sleeping better now that I am less prone to bugging him in the middle of the night.  I can't say that my sleep is entirely improved - Stella is still my daughter, after all - but back then I was nursing a whole lot and was also processing so much that I was usually researching lymphoma or writing on my phone even when I didn't have to be awake to tend to Lydia.  Now that things are going better, my blog posting frenzy has calmed down a bit.



And, in addition to more sporadic blog postings and moderately improved sleep, four plus months later, thankfully, a lot has changed.  In chief, Jeff's lymphoma is gone.  I could list other changes, but that one pretty much takes the cake.  I'm heading back to work soon, and trying to focus (along with Jeff) on getting through the rest of his treatment.  I'm also working on adopting a new perspective about the rest of this year and next and attempting to view it as a "bonus" year for us.  We get to stay in San Francisco a bit longer. Jeff can relax and recoup. 

But I guess that as we prepare to "put this behind us," I am struck by how I don't believe that will ever actually happen. Even when Jeff's next PET scan (after all the chemo is done) hopefully comes back clean, there will be scans, scans, and more scans. Lymphoma is not deemed "cured" until five years of continuous clean scans. I suspect that I will be forever hypervigilant about his health and, by extension, about my own and the health condition of Lydia and Stella. With the hypervigilance I know there will be a fair degree of anxiety about relapse as well. And what strikes me as most bizarre, is that there will come a time, quite soon actually, when we will meet people who have no idea that Jeff had lymphoma. Who have no clue what we have gone through in this insane whirlwind of a year. Of course, this is true of all sorts of different, intense personal experiences - you don't just walk up to someone and say, "my husband has lymphoma" as though it is the most important thing for them to know about you. But for many months now, Jeff having (had) lymphoma has been one of the most important things to know about me. It has occupied my heart and mind so fully, maybe I just can't imagine being in a place where this experience will at least take something of a back seat. 

In any event, I look forward to the R-EPOCH drugs taking off and going far, far away for good. By my count, ROCKSTAR Jeff has less than 72 hours left of their administration and when he is done there will be great cause for rejoicing in our household. It will, of course, be a bit tempered by the painful effects of the final Neulasta shot and the exhaustion brought on by the drugs, but we will par-tay in our own way. All the best to all of you. Katina