First Dispatch from KY

Team Miner,

We've now been in Kentucky for approximately a month. Stella started Kindergarten. Jeff begins teaching Monday. I turned 33. Lydia is talking up a storm and can walk up and down steps. Jeff was issued another clean bill of health after his last check-up and has now been cancer-free for a whole year. Good, good, good news.

There is so much to report, I hardly know where to begin other than listing those big ticket items. I don't want to turn this into just a home improvement or DIY blog, so I'll refrain from going down that path right away, other than to mention that I am posting this while I take a short break from assembling stools for the kitchen counter. I'll also note that my days are sort of a blur of childcare, squeezing in a little work, and unpacking/doing nesting stuff. Hopefully this will change soon when I find someone to watch Lydia and my to-do list shrinks a bit.

I am missing friends/home (SF)/and Bay Area weather. In that order. The people here are very welcoming, but I don't have any close friends yet, of course. That said, I've met some incredibly generous and nice people who have introduced me to others, welcomed me into their circles, and even called me up out of the blue. Now I need to work on getting out of my shell and out and about. Having a new house gives me a few too many opportunities to stay busy at home. The heat advisories which have been in effect the past couple of days have also given me absolutely no incentive to leave our air conditioned house. It is a furnace outside.

Before I sign off, as a brief update on the hippie goals, I've overcome my fear of baking with yeast and made successful loaves of bread. I also made yogurt. I succeeded in both of these endeavors thanks to my resourceful and amazing sister.* Neither of these items (bread or yogurt-making) were on my list, but I'm glad I'm able to do them now. The store-bought yogurt options are either subpar or pricey here and the bread is jet-puffed and nasty. Thus, even my paltry attempts are an improvement on what is available to buy. I have also made strides towards #8 (by buying and using cloth napkins), #7 (vinegar, vinegar, vinegar), and I am cooking a lot (#6). We probably eat out once or twice a week here. There are some great restaurants, just not too many of them, so eating out a lot would result in very little variety.

I can't promise that future posts will be more interesting. But I'll work on that. And I'll work on writing more frequently as well.

So long for now y'all.

K

*My sister, her husband and kids, my mother, and my brother came to visit already. It was so awesome to have them here and I adore having space to actually have people stay with us. (Lizard - following our HWW introductory course I made an oatmeal bread that turned out well. Wahoo!)

Random Goals for Becoming (more of) a Hippie in Kentucky

1. learn to make kefir
2. learn to make kombucha
3. sew stuff
4. go to yoga 3+ times per week
5. run and walk more
6. cook a lot
7. use mostly homemade/"non-toxic" cleaning products
8. use fewer paper goods
9. build a pizza oven
10. plant a garden
11. raise chickens

Read This

An excellent opinion piece about facing mortality, medical (cancer) statistics, and life going on. 

(Sorry readers, still on the topic of cancer, but had to share.)

Resolutions, Schmesolutions

I had resolved to resume blogging in 2014. Mostly just to write, but in particular to write about topics other than cancer. This has gone the way of most resolutions. Nowhere.

To ease up on myself, I'm scrapping the grand plans, and will instead just write when I feel the urge. I suspect this will result in infrequent posts.* 

For now, I want to record for posterity's sake, some of the sweet things Stella and Lydia have been up to lately. Aside from these dear, tender moments, we have been waking up at ungodly hours and dealing with serious four-year-old mood swings. The days are long, the sleep is shoddy, and it feels like I am plodding. It helps, sometimes, to remember that the fatigue and boredom will cease, eventually. But so will some of the good parts, so in no particular order:

• Stella just awoke from sleep to request water and kissed my hand, in a "pleased to meet you Mademoiselle" sort of way.
• Lydia waves goodbye and hello with her palm facing her face. It's a move you might have seen featured in the video for "All the Single Ladies."  
• On most days, Stella still runs to me and gives me a huge hug when I come home from work. I imagine this will not be "cool" and will not happen in a couple years.
• Lydia has begun to (sort of) communicate. In chief, she pants (like a dog) whenever she sees a dog. The most exciting things in her life are (1) Stella, (2) bathtime, and (3) any canine we spot in the neighborhood, so this panting is accompanied by frenzied leg kicks and rapt attention.
• Lydia's obsession with baths causes her to crawl towards the bathroom at warp speed anytime she hears the shower turn on.
• Stella calls me "Princess Mama" from time to time.
• Stella dawdles on walks to school expressly because she says she wants to spend more time with whichever parent is taking her that day.
• Lydia's makes an EPIC duckface if you purse your lips at her.  She also laughs socially - as though she agrees that something is so hilarious - whenever she hears adults laughing.

Before I add anything else, I'll sign off to nurse the silly munchkin and hit the hay.

Katina

*BUT, I do resolve to finally announce the winner of the Mucositis Menu Challenge this year.  Now that everyone but me has forgotten about it, I will stealthily announce a winner.... soon.

Gobble Gobble Shake It Shake It

Team Miner - 

There's nothing quite like a brush with rather major adversity to make you appreciate all the good things in life.  Like everyone else, I reflect on all the things for which I am thankful every year when Thanksgiving rolls around, but as this particular year draws to a close, the gratitude feels deeper than usual.

Though I am tempted to post a long laundry list of things for which I am thankful, I am going to save most of that for the party early next year (which we are still planning) to show our appreciation for everything that everyone has done to support us through Jeff's treatment. I'm thinking it might coincide with Lydia's baptism, since I would like to have her baptized here in SF, instead of Kentucky. 

When the party rolls around, we'll have more to celebrate. Yesterday Jeff got the results of his post-chemo PET scan: still NEGATIVE. Woohoo!

On Monday we have an appointment with the oncologist to discuss the PET scan. I hope we will get a clear sense of what type of follow-up monitoring and care will be required over the next several months as well. 

In other news, since I rarely seem to find the energy or inspiration to write anything these days, I am dealing with some "senioritis," so to speak. Emotionally, it is very strange to be here - in SF, that is - when we had planned to be in Bowling Green already. I have this preemptively wistful and sad feeling, knowing that we need to say farewell to our life here, but I am also overeager and ready (in some respects) to get this show on the road. We have so many dear friends here, and the thought of moving to what will be a lonely place at first, is scary.  So, I have a new resolve to channel all this ambiguity I'm feeling and really make the most of the time we have left here.  Consider it a Thanksgiving resolution.  Also, I want to make the most of the food scene everything San Francisco has to offer, so I've got to get out and get my grub on before we head East to a land that seems to mostly consist of chain restaurants and some reputable donuts.

Aside from my inner turmoil (which makes this sound a bit more emo than necessary, but whatever), we had a great visit last weekend with Aunt Emi and Marc as they passed through on their way to Seattle. They let me be a third wheel on a date to see "Catching Fire," which I thoroughly enjoyed.  Now, Uncle Mikey is visiting for Thanksgiving. He is playing with Stelly, and meeting Lydia for the first time and it is just lovely to have him here. Unfortunately for him, he has arrived in the nick of time to experience Lydia teething (again) and also learning to crawl and cruise around.  She is growing up so fast. This morning she sat up in her crib for the first time, and this afternoon, she pulled herself up to stand while she was supposed to be snoozing. The times, they are a'changing...

Love to all of you,

Katina

A Note From Jeff

I returned home recently from the last round of chemotherapy, and while it's taken me a bit longer than anticipated to finish this, I thought it would be an appropriate moment to (a). thank you all for your support and (b). write a bit about the end of treatment and what the future holds. So:

(a). Thank you all. Your support has been wonderful, and I am so grateful for everyone who has sacrificed time, money, or even just a positive thought for us during what has been a long, at times interminable, six months. I am supremely grateful for the love and support of Katina, proprietress of this weblog. Cancer treatment is unpleasant, but I am lucky to have a spouse who took so much on her shoulders so that I could focus on getting well. Also, she has good health insurance. I do not envy anyone who must continue to do all the ordinary business of regular life (shopping, child care, insurance companies, bills, etc.) on top of trying to stay positive and recover. Between Katina and you all, I have had the luxury to get well at my own pace without many external demands on me. Thank you. I really can't say enough about how much it meant to me and to us that so many people have been there in ways ranging from the biggest to the smallest.

(b). Treatment is over. There are no more hospital admissions scheduled, and I no longer have additional poison medicine to anticipate. The last PET/CT scan I had was negative. Technically, this does not make me cancer-free. Instead, it means the machine was unable to detect any cancer in my body - overlapping but non-identical categories. The last two rounds of chemo were much less stressful for my body, and I've already started to notice improvements in important departments, including (but not limited to) my ability to grow eyebrows and hair on my head. While I don't yet feel strong, I feel the capacity to become strong returning, and I look forward to sweeping out some of the mental cobwebs from my working brain and starting regular exercise. All of this is grounds for legitimate celebration, so I look forward to sharing hugs and congratulations with our extended support network.

And yet.

When it comes right down to it, I don't yet feel like celebrating. Partially, this is due to my temperament. An academic advisor of mine once dubbed me a "laconic midwesterner" and anyone who knows me knows this to be an accurate description, both geographically and attitudinally. I'm not a big jumper for joy by nature. The reservations I feel are more than emotional reserve, however. I wanted to write a brief thank-you to everyone, but I also felt I needed to write to clarify that my non-celebratory mood is more than just me being me.

Treatment is over, but we still can't be sure that cancer is. Cancer is definitely over for now, but just how long "for now" covers isn't yet clear. It is not impossible that we might find ourselves going back down the same road, only darker, in the coming months or years. Do I think that will happen? No. But when it comes down to it, the absolute last thing I want is to begin treatment again, while looking back on a celebration with the taste of ashes in my mouth because it turned out to be seriously premature.

So, you won't see me jumping for joy. What you will see, I hope, is me getting down to the business of living life again, free of the many constraints imposed by frequent hospitalizations and toxic medicines. You should also see me giving handshakes, hugs and words of gratitude to everyone who has been there for us in big ways and small in the last few months. We're planning on having a party at some point, but I won't be there to commemorate the end of cancer. I'll be there to celebrate (1). Katina and (2). everyone else whose kindness and care sustained us through this process. Thanks, guys.

-JDM

Nearing the Finish Line

Team Miner:

Things have been busy. I have not found time to write. Lydia's latest bout of teething affected her quite a bit more than when her two bottom teeth simply surfaced with no fanfare a couple months ago. The emergence of her two top teeth made our usually happy girl quite cranky, so we have been rather sleepless round these parts. I also go back to work full-time soon, I still haven't made the girls' Halloween costumes, and in my "spare" time, I've been trying to cook more with our nifty new CSA box. Time for blogging has been minimal.

So, here's the news, quickly. Jeff is "scheduled" (as much as things can be scheduled at UCSF) to be admitted for his final round of chemo this Sunday afternoon - 10/27. I estimate he will be there until Thursday, provided he actually gets in on Sunday. Last time around, with this particular drug, he did not feel too terrible except for being extremely exhausted and fatigued the day before he was discharged. He could use visitors - especially since the hospital stay is bound to be during the workweek when I cannot be at the hospital - so I added some visit slots to the Lotsa site. If you can sign up and help make his last round of chemo go by as quickly as possible, that would be fantastic.

In other news, we are starting to plan a mini-celebration for Jeff completing all this chemo. We'll have a real party in the new year also. But by the time his treatment is over, it will have been 6 (long) months since all this started. SIX months. So far, for our immediate celebration Jeff wants to pour out the two nasty remaining bottles of nutritional supplement we still have in our fridge from when his mouth hurt so badly. It will be cathartic and delightful to watch that Ensure and "Muscle Milk" swirl down the drain.

That's all for now.

Katina

One More To Go

Team Miner, 

Jeff came home again on Sunday afternoon. Just in time for the chaos and hilarity that is "Decompression" (basically a Burning Man reunion) to overtake our neighborhood. Decompression is one thing I won't miss about San Francisco when we leave here. That list of things I won't miss is short, so it's perversely comforting to encounter those few things that I dislike about SF. Makes me feel marginally better about moving. 

I didn't see much of Jeff in the hospital this past round due to work conflicts and both girls having appointments (first fillings (boo!) for Stella and first baby PT session for Lydia to strengthen her neck and counter torticollis) during the times I otherwise might have been able to visit. From what I've seen, and it's still too early to say for certain, methotrexate does seem to have wreaked less havoc on Jeff's system than R-EPOCH. He was extremely exhausted for a couple days, but fatigue is pretty much all he has felt thus far. Time will tell if his blood counts drop (which would be bad since I think our whole family is coming down with a cold) or if he has any mouth pain. Here's hoping that's over - forever. 

In other news, Jeff's hair is beginning to re-emerge. Peach fuzz, yay! 

I would write more but I'm on a crowded train and would prefer to focus on turning away from the dude who has placed his armpit in my face. 

Another thing I won't miss about SF: the Muni T(urd) Line. 

Katina

The Other Shoe

Team Miner: 

Jeff is finally back in the hospital for the first of two rounds of methotrexate. For reasons I don't entirely understand, UCSF is unusually crowded right now and Jeff waited for almost a full week to get an available bed. 

I am tired of being beholden to hospital schedules, or the lack thereof. Jeff's been gone all of 2.5 hours and I already miss having him at home.  However, I also want him 100% well, so in a way I am glad to be here alone with the girls as he pushes through this to the end of treatment.

Getting strung along for the past six days regarding this hospital admission is the perfect illustration of something I've been musing about lately. This whole experience has put me on edge. I feel like I am always waiting for the other shoe to drop.  

Photo from the Berkeleyside Flickr page, by 2812 Photography

For example, it was difficult the past several days for me and for Jeff to enjoy our time at home together, because we were always anticipating a call from UCSF telling him to return to the hospital. It was also frustrating to know that for each day we waited for his admission, his overall length of treatment was growing ever longer, and getting pushed back further and further. And, of course, this "hospital tease" is yet another example of things generally being out of our control, which induces a not immoderate amount of anxiety in me.

Even outside of this context, the "other shoe" phenomenon is needling me. I often find myself in this thought pattern where if I take a moment to be grateful for something, my mind immediately looks back as if to say, "It could have been so much worse." As soon as I reflect on that, my mind races forward, and I think, "Well, you never know what will happen. It might get even worse than that." Then, I kind of guilt my way back to feeling thankful again, but it's a sort of paranoid gratitude.  A wobbly thankfulness with caveats and conditions: like, I'm thankful... for now.

The only way out of this that I can surmise, not that I am succeeding in this endeavor, is to actually rest in the present moment. To stop reaching back and forward at the same time.  To just stop.

And I will.  I'll stop here for now, and get some rest.  Good night.

Katina

Delay of Game

Team Miner:

If only we could somehow penalize UCSF for delaying Jeff's treatment. It would be so satisfying.  Or if only there were some way to punish the hospital for screwing with our schedule. But alas, there is not really a villain in this scenario: the good doctors and nurses at UCSF, of course, are in the process of curing Jeff.  11 Long is just receiving some necessary upgrades, which puts some rooms out of service, and other patients need the available hospital beds more than Jeff does at the moment.

Even so, it's frustrating to be stuck waiting. We had hoped to have Jeff in the hospital over the weekend, when more people are usually free to visit him, when Stella can see him, and when I am not working. Now it's looking like it may take until Monday for him to be admitted, so that plan is not coming to fruition. And of course, this just delays everything further. Now the final round of chemo is unlikely to be over before the end of October. Blergh.

Enough whining. Grandma Robin is here. It's supposed to be lovely weather out here this weekend and the Okee Dokee Brothers (a "kindie" band  - is that a thing?? - from Minneapolis*) are playing some shows here, including at the Bernal Heights library tomorrow afternoon.  Hence, we will try to make the most of this hitch in our plans and take Lydia to her first show tomorrow. (Stella, is an old concert-going pro, in that she's already been to two live Justin Roberts shows. She is so hip.) For my sake, I'll try to soak up as much bluegrass as possible from the Okee Dokee Bros while I lament not being at Hardly Strictly Bluegrass and the olden days, back when I had a social life.

Katina

* Quelle coïncindence! August 20th was Okee Dokee Brothers day in my fair home state!

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

One thing after another

Hello Team,

Jeff was on calendar for admission to the hospital on Wednesday of this week. That didn't happen. Thursday also came and went. So now it is mid-afternoon on Friday and we are at the hospital, waiting on a bed. With any luck, drug one of the chemo cocktail will start tonight. Due to this minor delay, I've added some visit dates to the Lotsa calendar on Monday and Tuesday evening and on Tuesday morning. If you can come visit, please sign up!




So, I had what I thought would be a regular chiropractic adjustment scheduled this morning.  I have wonky (Greek) hips that get out of alignment with some degree of regularity. Since Lydia's birth really, the soreness and pain that I tend to get in my hips has been a bit worse. I chalked it up to lugging a chunky baby around all the time, but apparently something else is up. It appears that I may have a torn labrum - ring of cartilage surrounding my left hip socket. 

Thus, it's my turn to get an MRI next week. Joy. Once the docs can view the inside of my hip, they will confirm what is really going on, and what treatment I will require. It sounds like the likely outcome is arthroscopic/outpatient surgery + recovery.  My newly instituted running regime is also called off temporarily, as is vigorous walking, and walking up hills.  That rather limits my strolling options in our neighborhood.  So, while I want to self-medicate with ice cream, I should probably lay off given that I need to rest the ol' hip.  Phooey!

Stay tuned here for an update. Hopefully, this is nothing more than a chronic injury or labor and delivery-induced tear and I can schedule the surgery on my terms, when Jeff is totally done with chemo and bonus chemo. I'm also keeping my fingers crossed for a quick and straightforward diagnosis and that I will have an update by the end of next week. In the meantime, maybe someone can send me a bionic hip? And a cold beer?

Katina

A Vacation!

Hi everyone,

I took a bit of a vacation from posting, as you've possibly noticed if anyone is still reading this blog. After my birthday, I ramped up planning for Stella's fourth birthday party which took away from my limited downtime in which to blog.  I also tried to take it easy with Jeff as much as possible for a couple days.  The previous cycle of chemo was rough, since the effects of the drugs are somewhat cumulative.  He even had to get a transfusion for the first time because his red blood cell counts were so low.  This is typical for his chemo regimen, and he is doing fine, but, of course, now that he is just beginning to feel better, he is headed back into the hospital tomorrow.  Womp womp.

Fortunately, before he goes back, we managed to squeeze in some fun.  This past weekend Beth and Casey and Chris and Vedrana came to visit.  It was a delight to see them.  We are also hugely indebted to them because they made Stella's party possible by helping us set up the laboratory (the party was science themed), frosted cupcakes, bought last minute ice for drinks, cleaned up the chaos afterwards, etc. etc.  I so wish that Chicago and Kansas City were closer to San Francisco.  At least Bowling Green will be marginally nearer.

All in all, Stella's birthday was a success.  Kids ran around, consumed a lot of sugar, did some silly science, and Hayley even brought dry ice, which captivated the masses and was totally awesome!  I also have to recommend throwing a science-themed party if you have a girl and would rather avoid totally girly presents - like Barbies and such.  Although Stella really doesn't need any more toys, people gave her some incredibly cool, fun, and even educational (bonus!) presents.  She is now, for instance, the proud owner of a Bug Catcher, a microscope, a logic game, legos, and more.  Erika even made her an adorable rainbow pennant bunting for her room.  Her dream of having a rainbow butterfly bedroom is totally coming to fruition.

After the birthday party on Saturday, we laid relatively low on Sunday to recover.  Monday was Stella's actual birthday and the day Lydia turned six months old.  We went out for breakfast in the morning and then they both got immunizations (woohoo) and visited the doctor.  They are doing great.  Lydia has a cold at the moment, but is growing like a weed.  A chubby double or triple chin weed, that is.  Stella is still a bit of a string bean, but is firmly on the growth charts, which is saying something for my side of the family.  Jeff also went to the clinic on Monday and he did not require another transfusion. Following all these doctors' visits, we headed up to Mill Valley where the Fitzgeralds have kindly opened their home to us for a mini-vacation.  The past day and change has been lovely and restorative, even despite Lydia's snotty and feverish (due to shots) night wakings.

So that I can enjoy the rest of our time up here, I'm going to sign off.  Open slots for visiting Jeff in the hospital are still available, so check Lotsa and sign up if you can.

Katina

They Say It's My Birthday (Yesterday)

Howdy Team,

It's true.  Yesterday was my birthday.  I basically took a day off.  It was great and I even went for a run (well, jog) and got a massage.  But even if I hadn't been able to treat myself and relax, I think I would have ranked it as one of my best birthdays ever.  I have - as Stella would put it - a bazillion lillion papillion gazillion things to be thankful for, and yesterday both Jeff and Stella made me beautiful cards, a lot of people sent me kind words, I got some beautiful flowers, and Lydia laughed and laughed while I was changing her into her pajamas at bedtime.  Life isn't always easy, and I hesitate, without expounding, to repeat the trite phrase, "life is good," but yesterday was a really nice day.  And life, all things considered, IS good.

In lymphoma-related news, Jeff's mouth has not begun to hurt quite as much as it did last time around... yet. It remains to be seen whether the symptoms of mucositis are going to intensify further or sort of taper off. Meanwhile, I am cooking through more of our dear readers' recipe suggestions and Jeff is laying off acidic, citrusy, and/or crunchy foods.  Perhaps his cautious approach is helping?  He is definitely jonesing for everything he can't eat.  So that sucks.

Thus far this round I have remade the trusty ginger chicken jook (I tinker a bit with the recipe in that link). This time, per E-Pan's suggestion, I modified it a little further to make it in the slow cooker, with great success.  I adore the slow cooker.  The only downside is setting something to cook overnight and then waking up in the middle of the night, drowsy and confused by the smell of food cooking.  But, it's a small price to pay for the convenience factor.  

I also made Smitten Kitchen's sweet corn spoonbread, per Karen's suggestion.  It is great. 

Stella helped me bake it.  I would highly recommend making this spoon bread with fresh corn, or freezing some fresh corn and then making it for Thanksgiving.  Jeff has been eating it with my slow cooker pinto beans and also with creamy double-mushroom soup (suggested by Amber on Facebook), which is quite, quite tasty and rich.  If you like mushrooms, this would be the perfect soup for you.  It's bursting with creminis and accented with porcinis (at least as I made it). Basically it's mushrooms to the MAX.  We're not eating it with croutons at the moment thanks to mucositis, but I think it would be amazing with homemade garlic or cheesy croutons.

That's all the news I have to report for the moment.  I'm soon to retrieve Lydia from her practice days with the nanny before I return to work in just a few short weeks and I have to pick up Stella from her first day at a new preschool campus.  Exciting times.

Katina