Thursday, November 28, 2013
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,
Friday, November 08, 2013
Friday, October 25, 2013
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.
Tuesday, October 15, 2013
Wednesday, October 09, 2013
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|
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.
Friday, October 04, 2013
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.
* Quelle coïncindence! August 20th was Okee Dokee Brothers day in my fair home state!
Wednesday, September 25, 2013
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.
Monday, September 16, 2013
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.
Friday, September 13, 2013
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.
Thursday, September 12, 2013
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.
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.
Monday, September 09, 2013
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.
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!
*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.
Friday, September 06, 2013
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.
She makes a man want to speak Spanish"
Monday, September 02, 2013
[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
Friday, August 30, 2013
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?
Tuesday, August 27, 2013
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.
Wednesday, August 21, 2013
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.
Friday, August 16, 2013
This is old news if you are on the Lotsa site, but Jeff's last hospital admission went pretty well. He started off with a less than ideal roommate situation, but was ultimately moved into a spacious double room that he got all to himself up until the last 18 or so hours. We even had a date - which I wrote about before.
Unfortunately, on the day he was scheduled for discharge, I got sick and spiked a fever. Before Jeff began enduring chemo, I never knew that fevers were potentially life-threatening for patients who might be neutropenic due to the drugs. So, we took my illness seriously (for a change, I guess). By sending a one-shot e-mail out to the Lotsa group, many wonderful friends offered Jeff a place to stay out of our apartment/den of virus and illness. Thank you so much to all of you. In the end, Julie and Taylor were out of town and live just a couple of blocks away so, due to their kindness, Jeff was able to crash at their lovely place for two nights. It was an ideal solution to a less than ideal situation.
While Jeff rested a couple of blocks away, I went medieval, shall we say, on my cold. As usual, I tanked up on apple cider vinegar. I drink it diluted in hot water with a little honey. It's pretty bearable, even remotely tasty that way. Turns out Bragg markets a beverage to appeal to folks like me (and my sister) who believe in the healing power of ACV. Quick review: I've tried it, and it's pretty good. But I prefer to pocket my cash and make the hot drink at home.
In addition to trusty ACV, I took some zinc and some vitamin C - both of which I believe did no good because I was already sick when I began taking them.
And then... I turned to garlic. Oh, garlic.
I cut cloves in half and sucked on them like disgusting, stinky, and pungent lozenges. Weirdly, the garlic lozenges instantly made my throat feel better. They even seemed to make my nose a bit less stuffy. I actually believe the garlic helped me recover, if only because I was forced to drink more and more water to wash out the taste and attempt to stop reeking so much for my poor mother. In the end, I rebounded relatively quickly. Now Lydia still has some occasional sniffles, but we are all reunited at last and I am much less smelly.
Now the title promised something recipe-related, so I'll stop droning on about my sinuses and cold remedies. I have tried the first two recipes in the "Mucositis Menu" contest. In addition to the entries on Facebook and in comments on the blog, our friend Jesse gave us a cool cancer fighting cookbook in celebration of the great PET scan which will be especially useful for remission and has some tasty looking recipes. Deb and Mike sent us a cancer cookbook all the way from Minneapolis, which has given me some great ideas and a couple of recipes to try. I'm adding those to the queue.
Since Jeff's mouth is still feeling fine for the time being, I made the Irish Stew with Colcannon (suggested by Jamie) and the Creamy Edamame Risotto (suggested by unknown - please ID yourself!). Both were delicious and met with rave reviews from me, my mom, and Stella. I didn't modify the Irish Stew/Colcannon at all. I used different cheese - we happened to have the yellow Babybels around - for the risotto, but I think it would work well with any creamy, relatively mild cheese. I also added a little fresh oregano to the risotto, because I had some and felt I should use it up, but the dish didn't need it.
For textural purposes, neither would work great for Jeff when his mouth is at its most painful. But, as Jamie mentioned, the colcannon (i.e. the mashed potatoes) is perfect for Jeff's situation and enriching them with Guinness-based gravy is genius. Likewise, I could always make the risotto a little more broth-y for Jeff when necessary. And if anyone wishes to try the risotto recipe, it is absolutely kid friendly. Stella was still talking about it today at dinner. It is also adult-friendly: It calls for less than a full can of beer, which means you get to drink while you cook. In fact you have to drink. Otherwise perfectly good beer goes to waste. To waste! (I didn't this time around due to my cold, but will gladly take one for the team next time I make it.)
Thanks for these first two submissions friends. More reviews to come, followed by, I'm thinking a top three "Mucositis Menu" submissions post, and then a reveal of the big winner.
Monday, August 12, 2013
I mention this because I fear that some of my recent blog entries have been venturing into "deep thoughts" territory. I don't mean to wax so theological. It just helps me to flesh out my thoughts when I write them down.
On that note, I have more to say on hope/prayer.
To begin, I have mentioned this before, but I am not much of a pray-er. It is really challenging for me. At the root of it, I am uncomfortable with the idea of prayer involving me asking God for something I want. Don't get me wrong, I do sometimes, but I think that when people pray in that way, it often turns into bargaining. Or whether or not the prayer gets answered ends up implying something about the asker, or about God.
A simple illustration might help me get my point across. Kid asks for new, let's say, banana seat bike with streamers on the handlebars for Christmas. Kid prays to God every night for this bike. Kid does not get the desired bike. Kid's thoughts probably veer to: what did I do wrong that God did not see fit to give me this bike? Or, what's wrong with God that I did not get what I wanted/so richly deserved? Alternatively, let's say kid gets bike. Does God love kid more then? Obviously, not.
The bike story is dumb. I know. God was not directly involved in getting or not getting the bike. Clearly, Santa is to praise or blame for the outcome. But the concept applies even to praying for much more important things. "[We] can't always get what we want." Or even what we "deserve." That doesn't make God impotent or uncaring, it's just an unfortunate fact of life.
So, in these past few months as I have been facing this reality in a more stark way than I had before, I have realized that prayer - at least for me - should be better described as focusing. Or meditation. Again, I am not "good" at this either, but the Anne Lamott book, "Help, Thanks, Wow" (which I also wrote about earlier) has helped me give voice to some of these ideas.
Instead of asking for God to do something specific, I ask for "help" to get through the day. Or I might "ask" for help/support for someone else who is having a rough go of it. Now I don't know if that person will actually receive tangible help, but I feel better directing my positive energy and thoughts their way.
"Thanks" is an important one too. Needless to say, I am really thankful right now. Especially for Jeff's doctors and nurses, but for a lot of other things as well. So I try to remember to live life with gratitude. And this is an especially good concept to remember when life is especially awful. Things could always be worse, so I try to think about that. I have greater degrees of success with that mindset depending on the situation, of course. Oddly, it is easier for me to feel grateful about very weighty things than when something truly stupid and exasperating occurs.
Finally, "wow" is one I am still figuring out. I attempt to apply it to moments when I actually stop to recognize beauty or feel a sense of wonder. Today I had a brief "wow" moment when I spotted several massive yellow hibiscus blossoms growing in the largely untended and gross MUNI park on 22nd Street. I also felt a sense of "wow I am lucky to be the parent to such a hilarious and delightful kid" when, on a whim, I took Stella to Ross this morning for the first time and she selected, one after another, the most hideous rainbow, sparkle, princess, or sometimes all of the dreaded above shirts and deemed them "beautiful." I also felt wonderfully lucky to have a child who listened when I said we weren't buying them.* Those are times when, I think, "wow" is appropriate. Obviously, viewing the Taj Mahal, seeing your infant child for the first time, watching the sun rise, etc would be good times for "wow," too.
Now I'm off to watch another episode of "Call the Midwife." Tragically, we have only two left in Season Two!
*I did shell out like $13 for some crazy rainbow running sneakers for her. I couldn't resist. They are kind of like this, but even more garish, which equates to even more adored by Stella. They are also Polo, not New Balance. You gotta love Ross.
Sunday, August 11, 2013
That played out title phrase, of course, applies to the raising of all children. It is especially applicable to our daughters though, and to our whole experience of getting Jeff to this point in his treatment. So, to our whole village: thank you again. Thank you so much.
I do want to take a minute to give shout outs to the Miner village townspeople who made last night possible. Last night Jeff and I had a date. A date! Admittedly, it was in Jeff's hospital room at UCSF, but I believe it was the longest child-free time we have spent together since Lydia was born.
Shout outs first to Kate, Jamie, and Benno who took Stella in as a surrogate daughter and sister on a camping trip with families from Stella's school. I know other families on the trip (Galateia, Justin, Jack, and West, in particular) also welcomed her and made her feel at home away from home. By all reports, she was so at ease that she (of all people!) slept like a champion. She also saw a deer and a banana slug, and ate s'mores, so it was pretty much an amazing trip for her. Next, to my mom, for putting her life on hold for what will be more than 7 weeks to be here with us this summer. For everything she has done we are so indebted. And she watched Lydia last night while I visited Jeff chez 11 Long, so yay Mama! And big thanks to my delightful coworkers, and Kate M (née B), and Matt and Heather for Serpentine gift cards. I'm not sure which gift card we used last night, but we purchased two deeelicious hamburgers and a great shaved vegetable salad and ate way, way better than what the UCSF cafeteria would have provided for our impromptu Heme/Onc/BMT ward date. And to Jeff's awesome nurse, Aime, who managed to transfer Jeff out of a less than ideal double room situation on Saturday afternoon. He slept reasonably well last night and has been able to find some peace and quiet to work on a book review. Jeff hasn't actually had any space to himself during chemo since Round 2, which was the infamous "shingles" experience... The faux shingles made the solo room more like a solitary cell - without even any recreation time - since he was completely confined to his room. So getting a single room that he can actually exit from time to time is a major plus.
And, finally, to my dear husband. I never envisioned enjoying a take-out meal eaten over a hospital bed as much as I did last night. It was delightful. I find myself surprised to feel so grateful that months like the months we have recently experienced have made me take fewer things for granted. I can't remember exactly what we laughed about last night, but even during the worst, worst parts of not knowing what was wrong with Jeff, and the moments when he is at his very sickest, he has always found room for silliness and humor. I snagged one awesome dude. Go me! With that I will cut the sappiness and return to my regularly scheduled programming: that is, "Call the Midwife" with my mama now that both little Miner ladies are asleep. Good night all.
Friday, August 09, 2013
While we were waiting for the PET results, and in fact throughout this entire and ongoing experience with lymphoma, I have been very uneasy about "having hope." Most of the time it seems like when people talk about "hope," or encourage others to "have hope," they are hoping for a certain outcome: a new/perfect job, a winning lottery ticket, that their kid will start sleeping through the night, surviving a cancer diagnosis... Now that I have learned how little control we actually possess over our lives, hoping for such specific and extrinsic things strikes me as futile. I'm not advocating for giving up, or not working towards a promotion, or for throwing caution to the wind and not doing what is within your control to be healthy. Fundamentally though, I think you set yourself up for disappointment or anger if you hope for anything outside your control.
Wednesday, August 07, 2013
Meet NED (a.k.a. Jeff Miner) who has "no evidence of disease!" The doctor (finally) called this morning and reported that Jeff's scan was clean. The PET did not show any lymphoma in his tumor sites, his lymph nodes, anywhere.
This is the best news we could have hoped for so we are pretty elated over here. I will confess that I was not anticipating this, so I am extremely delighted.
However, this changes nothing going forward in terms of treatment. Jeff still has two cycles of R-EPOCH and two of the methotrexate bonus rounds to go. The goal of this remaining chemo will be to absolutely wipe out any remaining cancer cells that would have evaded detection in the PET.
In other - less momentous, but also exciting news - Stella is sleeping really well in her new bed. Lydia just rolled over (for approximately the third time ever) and, in a move that surprised us all given that her mood has been pretty congenial, she cut her first tooth!
Thanks to everyone for the recipe submissions. You all will be keeping me busy cooking for these next two rounds.
Monday, August 05, 2013
While we are waiting for the results, I thought I'd introduce the very first For God and For Cheese Sweepstakes!!! I don't know what the prize will be, but there will be, at the very least, some recognition on the blog for the winner.
- The texture of the dishes should be essentially pureed and very easy to swallow.
- Acidic and spicy foods can inflame existing inflammation, so foods that are delectable, yet on the somewhat bland side of the taste spectrum would be preferable.
- We are not trying to lose weight here. No need to submit anything low in fat, caloric and rich is a-ok .
- Jeff's immune system is likely to be low at the same time his mouth is hurting, so recipes should call for cooked produce, not raw vegetables or fruit. Note: it is not necessary to include vegetables or fruit in the dishes you submit, but if you do, they should be cooked.