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

Mucositis Menu: Two Entrees

Team Miner,

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.

Katina

I am becoming so cheesy

Long ago, I certainly wasn't watching SNL, but Helen and I somehow learned about "Deep Thoughts" with Jack Handy. Hilarity ensued. One of us, I believe it was Helen, came upon a set of postcards featuring some of the deep thoughts and I specifically remember finding this one high-larious.


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. 

It Takes a Village

[This blasted version of Internet Explorer is forcing me to draw on my ancient and very spotty knowledge of HTML "programming." Argh. Bear with me.]

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.

Hopelessness

This may seem like an odd topic for a post given the excellent news we got from Jeff's PET scan.  I am not feeling hopeless.  Don't call the crisis line on my behalf.  But I've been thinking about "hope" a lot, and have come to some new realizations.

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.

To that end, I am truly hoping only for a couple of things in life these days.  Obviously, I want our little family to lead a happy and long life all together.  I want that more than anything else.  I also wish and hope that Stella and Lydia will grow up to be strong, independent women (and, ideally, scholarly scientists).  I hope we find an awesome house in Kentucky next year and meet kindred spirits and new friends out there.  But none of these end results are within my control.  So, I will hope instead for courage to withstand whatever comes my way.  And I will aspire to cultivate a sense of humor and an attitude of love to get through it.  Depending on the circumstances, this will be easier on some days than others, but this is something internal, something I can work on.

 

This turned out to be a bit more serious than I had intended.  I can't come up with a witty ending, so I'll leave it here, and leave for the hospital.  Jeff's getting admitted for round five in 30 minutes.

 

Later team,

 

Katina

 

 

 

 

Big News

Team Miner:

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.

Katina

A Contest for our Readership!

No news yet on the PET scan.  The procedure itself went smoothly and, as far as I was concerned, the waiting area was great.  Lydia viewed some fish in a tank and was amused by a random pinwheel in a potted plant.  She also took a nap.  I got to treat myself to an iced mint mojito coffee at the nearby Philz.

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.

Here's the deal.  Given Jeff's latest bout with mouth soreness and inflammation due to the chemo cocktail, we are pretty certain he will go through the same exact thing after the upcoming rounds of R-EPOCH.  [Note:  the next round of chemo will begin this Thursday, 8/8. There may still be slots to visit him in the hospital, so check out the Lotsa site if you are interested.]  Thus far, as I've mentioned, I have cooked a few things that Jeff can tolerate when his mouth is hurting so much:  chocolate tofu pudding, black bean soup, ginger chicken jook, and even cheesy oatmeal.  I say "even" cheesy oatmeal, because I ridiculed him to no end for cooking that for himself one time in grad school only to find out now that recipes are developed for this kind of thing.  

So we are looking for recipe contributions for what I hope will turn into a more varied and tempting "Mucositis Menu." You don't have to be the next Martha, Julia Child, or Jamie Oliver to enter the contest.  Nor need you even develop your own recipes:  the submissions can merely be suggestions from other cooks. Keep the following points in mind:

• 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.

Generally, think of things that would potentially appeal to this nugget when she moves on to dine on things other than rice cereal.

I will cook the recipes that appeal to Jeff and announce a winner at some unspecified time in the future.  [Erika - I will note your submission of what looks like a very tasty asparagus soup as the first entry.  Thanks!!]

Katina

 

Weekend Update

[Unlike the one on SNL, which is at least occasionally funny, I can't promise that this one will be at all. Just the facts, really. And something is wrong, either with Blogger or my version of Internet Explorer, so I apologize for any unusually terrible formatting.] 

We had a pretty good weekend. Well, I should say that my mom, Stella, and Lydia and I had a good weekend. We had a lot planned and Jeff still felt crappy, so we girls didn't really see much of him. That bummed me out. On the upside, his mouth is finally beginning to feel a bit less sore and he is talking more or less normally again. He hasn't even had to down any Ensure this weekend. That's a win because that stuff is foul. He also blogged again - which is a win for us all. 

 Despite having a fun weekend, I am feeling very anxious about the PET scan tomorrow. Instead of writing anything about that, I'll share a couple highlights of our weekend, in no particular order, for those of us who actually left Potrero Hill. 

Weekend highlights for Lydia: baby spa time (a.k.a. a bath, but they are relatively rare in our household so they qualify as something quite special and therapeutic, like a spa), a delicious dinner of rice cereal and breastmilk, her first real ride in our "big kid" stroller. 

Weekend highlights for Stella (judging by high volume of her voice, which - when she's not throwing a fit - usually indicates sheer delight/unbridled excitement): seeing lemurs, the new baby tiger, assorted other animals and PENGUINS at the zoo, playing lemurs - which involved pretending to poop and pee all over the place with Siri, chasing seagulls away from our picnic lunch at the zoo with Siri, riding on the Thomas Train at Danjo's party, seeing a helicopter airlift a dude up into the sky on the way to Danjo's party, making and consuming banana chocolate chip pancakes topped with whipped cream, (hopefully) sleeping in her big girl bed tonight. 

Weekend highlights for me: a largely peaceful and very beautiful drive to Felton, delicious vanilla cupcakes and orzo pasta salad made by Lauren, dinner OUT (***WITHOUT KIDS***) with Neha and the time to really talk with her, a chance to read my book on my solo ride on Muni (I cannot believe a Muni trip qualifies as a highlight in my life these days. This is actually quite disturbing given how much I usually complain about it.), catching up with Erika and getting to see her kiddos and Lia at the zoo today. 

Weekend highlights for my mom: witnessing the aforementioned helicopter incident, seeing animals she'd never seen before at the zoo (kangaroo, hippo, rhino), seeing Erika, Siri, Nea, Rina, and Lia, reading "Gorky Rises" (another William Steig hit) with Stella, traveling through the redwoods on the Thomas Train, long walks in the neighborhood with Lydia in the Ergo.

Jeff Returns to the Blogosphere

Team Miner:

I have been prodding/nagging Jeff to return to blogging.  He is an excellent and hilarious writer.  Finally (finally!) he has answered my pleas.

You can visit his blog at http://justkillingtime.blogspot.com/.  His triumphant return post shares Stella's (and his) review of "The Rescuers Down Under."  I won't spoil their critique.  You'll have to check it out.

Other thematic ideas we have contemplated for Jeff's future blog entries include:

• "Open Letters" to things that are not fun about cancer (e.g. vincristine, neuropathy, etc.).  This would be in the vein of this excellent (and yes, profane) piece on McSweeney's entitled: "An Open Letter to People Who Use the “Battle” Metaphor for Other People Who Have the Distinct Displeasure of Cancer."
• Pseudo-Yelp reviews of various parts of the UCSF campus:  the PET scan machine, the MRI machine, the 14th floor, the 11th floor, etc.

Perhaps these entries, and more, will come your way soon dear readers.  Hint, hint Jeff.

Katina

Patience Fatigue

Team Miner:  

Jeff has his PET scan scheduled for this upcoming Monday.  It has been over three months since we initially found out he had a mass in his chest and, for me, at least, this scan cannot come soon enough.  Our life has been all topsy-turvy since April 30 and I am so anxious to know how the lymphoma is responding (hopefully, total annihilation) to all this chemo.  

But, alas, Jeff is still a patient, and with that title comes the requirement that I've written about before.  You have to actually be "patient."  So, we are waiting for his white blood cell counts to come up.  Waiting for his mucositis to clear up.  (Another new word thanks to this experience meaning "painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy."  Delightful.  NOT.)

To pass the time and to address this terrible soreness in Jeff's mouth, I have managed to cook two additional things that Jeff has successfully consumed:  black bean soup (I simply pureed ordinary black beans that I had cooked in the slow cooker with homemade chicken stock) and congee/jook (with chicken, ginger, and some coconut milk for added calories).  I am also forging ahead, with my mama's help, to combine existing furniture with a couple of new pieces and create a shared room for the little ladies.  We conquered IKEA yesterday and tomorrow I will procure a power drill (whee!) to assemble the furniture.  Expect a lot of frustration and possible cursing in our apartment as I construct these pieces.  However, when I'm done, Stella will be one step closer to having the "rainbow flower butterfly rainbow sparkle butterfly" themed room of her dreams.  (Have I mentioned that the girl likes rainbows?)

While I keep myself occupied as we wait, the other thing I'm struggling with - aside from waiting, which I have always been really horrible at doing without griping and whining - is a feeling that we can't always get what we want in terms of medical service.  Don't get me wrong.  UCSF has been great.  But I had envisioned, perhaps incorrectly, a rather immediate face-to-face meeting with the oncologist to review the results of the PET scan.  Turns out we can expect a phone call.  And then, "if we have questions," we can call and schedule another call.  

I'm sorry. IF I have questions?   I always have questions.  I am that "(im)patient advocate."

But anyway, the PET scan approaches and we'll hear, at some point early next week, over the phone, how things go.  Stay tuned.  And meanwhile, please do your thing sending supportive thoughts, vibes, etc Jeff's way.

Katina