Guest Post from My Marital Property!

Hi everyone,

Please join me in giving a huge welcome to the one - the only - Jeff!  You get to hear straight from him instead of me, for once.  I guess you'll be able to test whether I am a reliable narrator or not.  This was sent via e-mail before, so I'm sort of cross-posting it here.


Katina
______________________________________________________________________
Dear all,

I imagine many of you are keeping up with Katina's blog, but I asked her to send this update to all of you so you could hear a bit straight from the horse's mouth. Perhaps some of this will duplicate what you already know. However, given that there was some confusion on our part (and the doctors' parts) through the diagnosis phase about the cancer I have and the accompanying treatment, I wanted to clear the air.

 

The diagnosis:

After the many, many tests and procedures, the final diagnosis is a pretty typical, if advanced, "diffuse large B-cell lymphoma" presenting in my chest, liver, and pelvis. In the final analysis, the doctor was "most impressed" by how bulky my tumors were, but it seems that many of the (apparently) unusual elements of my cancer's presentation were red herrings. I looked like a zebra for a while, but I am a somewhat ordinary horse.

 

The plan:

I write this from home in the middle of my the first round (out of a likely 8) of chemotherapy. Each cycle will last about 21 days - a 6 to 7 day hospital stay for constant chemo infusions, followed by about two weeks at home. I also heard yesterday that there may be one last intense burst of prophylactic chemo after the final round. There will be a full-body scan after the fourth round (60-70 days, or 2 to 3 months from now) to see how the chemo is working. At that point the doctor hopes that the cancer will have shrunk enough to be invisible to the scan. The remaining weeks of chemo will then be their attempt to dredge my system clean of every last cancerous cell to prevent relapse. When we get to that point, there will be longer-term check-ups and scans and things to make sure that I'm still cancer-free.

 

The prognosis:

Based on this diagnosis and the results of yesterday's doctors visit, the doctors continue to impress upon me that this is a curable illness. At yesterday's visit, the doctor listened to my lungs and tapped on my liver and suggested that (a) my lungs sounded better and (b) my liver felt/sounded noticeably smaller than when I was in the hospital. Both of these are less precise than the full-body scan I will get after round #4, but they do indicate that my tumors are likely shrinking. My plan was always to win (you root for the home team, no matter what the odds) and this news encourages me that my plan will be realized. Obviously there are no guarantees in life, but this news makes my chosen attitude (irrational optimism) easier to maintain.

 

How I am doing:

Generally, pretty good, all things considered. I did not experience many obvious side effects during the first actual chemo infusion, although I am feeling tired. But it's hard to say why this is- people report fatigue during chemo treatments. However, I slept restlessly in the hospital, thanks to their pumping me so full of fluids I ran to the bathroom at least once an hour around the clock. I've slept fitfully at home as well, at least in part due to stress. Tiredness or fatigue is also a symptom of troubled sleep.

The biggest side-effect I currently feel is not from chemo at all, but from my three-week hospital stay. I lost 12 to 15 pounds during my time in the hospital and I feel noticeably weaker as a result. So while I no longer get out of breath from climbing a flight of stairs, my legs are so tired by the end that the result is the same: a good sit. I have some serious work to do to build my body back up. I'm taking walks and eating as much as I can, but it's not going to be easy. I still have all my hair and a scrubby beard I grew in the hospital, but am planning a preemptive strike to take care of both.

I have been overwhelmed by all of the supportive emails and calls I've gotten - so overwhelmed I've largely not responded to them. I'm going to try to start digging out on that front soon, but rest assured: I appreciate all your thoughts and best wishes.

Jeff

Patience/Patients

Team Miner:

It has been wonderful to have Jeff home. I had missed him in all kinds of the most acute and also mundane ways. Lydia, who will be three months on Saturday, is greeting his return with lots of smiles, valiant attempts to roll over, and a surprisingly cheery disposition for an infant. Stella is super glad to have Papa back. However, she is currently preoccupied with constantly instructing Manou on her knowledge of Spanish vocabulary and pronunciation. It really brings out her bossy side: e.g., "no Manou, pink is rosado (rolling her r"...). She's sassy, in word and in deed/fashion.

For Jeff, freedom from the hospital has been an adjustment. He is weak and has lost weight. He's tired, too. But on the bright side we learned at his outpatient check-in yesterday that his counts are still good, his liver already seems less swollen and inflamed, and his breathing seems to be less labored as well.

Overall the outpatient appointment was a big success. But it took almost four hours. (I believe this was a result of the strike since appointments had to be re-scheduled from earlier in the week to account for short staffing... I also can't find any updates on whether the strike advanced the ball at all or had any impact on the bargaining negotiations... But I digress.).

If you know me, you know that patience is NOT my virtue. Jeff, on the other hand, is always slow to complain, and easy going. Lately, he has impressed me anew with his ability to roll with the punches. He jokes that he is a patient, so that tendency comes with his role. But it doesn't for most people and I am so proud of him. His attitude has been pretty darn indomitable through this mess so far. This is serving him well in terms of morale and spirit and his ability to get along with doctors, nurses, and medical staff.

In other news, we are still overwhelmed and grateful for the support we continue to receive from family and friends.   Chemo Round Two will start on or about June 5, so check the Lotsa site for new "volunteer" opportunities soon.

With thanks and hope,

Katina

Lip Service

I have been thinking lately that I was yearning for less "personal content" on this blog. I can't wait for the day when I have to dig deep to think of anything blogworthy in our lives for posting. I'd like to have to write about inane TV, celebrity gossip, etc. As luck would have it though, events keep transpiring to create more content. 

I mentioned the strike at UCSF earlier. Let me begin by stating that I am by no means anti-union. I am the daughter and grand-daughter of union employees. I believe the collective bargaining process makes sense in some situations and that workers' concerns about benefits, pensions, and the like are, of course, legitimate.

But - from a very current, very personal perspective - I am also angry at collective bargaining situations that result in substandard patient care. And I am furious at parties in these situations who employ blatantly false rhetoric. As one of my friends put it, patients should never, ever be "bargaining chips" in this type of dispute.

Patients were, however, undeniably impacted by this strike. Jeff was lucky to end up with a lamer than usual breakfast and to actually get his chemo as scheduled (even though it was much more uncomfortable than it might have been if the CT machine had been available as usual.)  Radiation and chemotherapy were postponed for many other patients. Bone marrow transplant procedures were delayed. Surgeries for children who need heart operations did not happen on schedule. The list goes on - see here.

In light of these facts, it made my blood boil to see these AFSCME signs that claimed to be striking for "our patients" as the number one priority. Bullshit.

Now I understand that a group of employees engaged in a struggle with their employer have only so many cards in their deck and a limited set of strategies to employ. But the union is making claims in this situation that just don't add up. This is disingenuous crap.

For example, the union says they are striking for their patients because:

• Current staffing ratios are making it difficult to provide quality care. A legitimate point, maybe. But this issue is at loggerheads with all the union's other demands. Increasing pension benefits, wages, etc will make the cost of doing business go up for UCSF. There's no way around that. Ultimately, if labor costs rise, won't UCSF have to respond by cutting labor later - defeating the stated goal of improving staffing ratios?
• Same goes for the demand that a flexible workforce be automatically converted to permanent status. I presume, this will also make labor costs rise since I'd think that a status conversion would mean an increase in (costly) benefits for newly permanent workers. Don't get me wrong, I believe such benefits are good things, but this is not in the "patients' interest."  Puh-lease.  I also assume that this particular demand would just result in lining the union's pockets.  More permanent workers probably means more union workers and more dues for AFSCME . [Note: I haven't fact-checked my assumptions here. I have a husband with cancer and two little kids to take care of so my priorities are elsewhere. I also drafted this post while nursing Lydia at 2AM - so forgive me. I will happily stand corrected if I am wrong.]
• Even the claim that a better rested workforce will result in better patient care fails to resonate with me.  The contention is that the union wants more pay for missed breaks. At first blush, okay, makes sense:   create policy conditions wherein employers will want to push employees to take needed breaks. But really, might additional pay for missed breaks only create incentives for workers to skip breaks intentionally? Seems just as likely.
• And the subcontract argument isn't about patients either.  I don't feel that one even deserves my time.

These, and other, specious claims about striking "for the patients" are annoying enough. But seeing at least seven patients (Jeff included) sent home from the heme/onc ward in one night to address short staffing is quite another. I pray that all these discharge decisions were medically appropriate, but the mere fact that the strike played a part in them makes me uneasy.  And knowing that some patients were denied scheduled surgeries, transplants, and life saving therapies is just unconscionable. This dispute is about money. Fundamentally, that's it - nothing more. Patients are just caught in the crossfire.

So, hope with me that this dispute reaches a resolution soon. No more patients should have to suffer. And this Mama Bear will be LIVID if it creates any delay in Jeff's treatment schedule or standard of care.  

With that I will sign off, sounding (incongruously) like the least liberal person in this City by the Bay,

Katina

PS - I acknowledge that a neutral fact-finder has apparently sided with the union on several of the collective bargaining demands.  That still doesn't make these demands "about the patients" or "for their benefit."  And that is my beef.  The end.

Home Again Home Again Jiggity Jig

Team Miner:

Jeff is home!  It has now been exactly three weeks since he was admitted into the UCSF ER, so this already feels like quite the odyssey.  Yet, treatment has only just begun.  And weirdly, the "routine" of hospital visits was just starting to feel slightly "normal."  Stella even asked at bedtime tonight - after Jeff had just been in her room - if we were going to "call Papa on the phone."  So, needless to say, it seems we will be adjusting and re-adjusting  to our family's new "schedule" throughout this journey.  

But, I digress.  Hallelujah Jeff has conquered Round One of chemo - with much bravery and impressive vigor!  If everything goes well, he'll be home for about two weeks before he starts Round Two.

As expected with anything at a hospital, not everything went smoothly for Jeff's discharge. Many UCSF employees are currently on strike, which complicated procedures.  [More on that strike when I've had time to compose my thoughts and possibly calm my rage on the matter.  However, I'll post some links below for those who may need to satisfy their curiosity now.]  

On the less complicated end, the Hospitalist doctor had to act as Pharmacist for Jeff's outpatient meds.  Also, patients had no choice in their food.  This resulted in Jeff getting something called "wheat triangles" for part of his breakfast.  They had to call them "wheat triangles" because they were certainly not toast.  Jeff described them as warmed, slightly soggy triangular pieces of bread.  Thus, not misleading, but also definitely not delicious.  

On the more complicated side, however, was Jeff's lumbar puncture for the administration of the final chemo drug of this regimen.  They tried to do the lumbar puncture yesterday.  It did not work.  Apparently this occurred because of the nuances of Jeff's (majestic, but somewhat compressed) spine and his unusually slow flow of spinal fluid.  Ordinarily, after a failed lumbar puncture they would typically attempt the procedure under CT guidance, but no non-emergency cases are being permitted for CTs during the strike. 

Jeff toughed out a second "spinal therapy" today and and got the chemo he needed to close out Round One.  I was hugely proud of him for this.  [On a side note, this made me glad (again) to have avoided epidurals during Stella and Lydia's labor and delivery.  I also feel like I have now experienced a taste of what it might be like to be supporting someone during their labor/delivery.  I was so glad to be there for Jeff - but also felt quite inept and disoriented.]

I'll close with a silly picture of Jeff and my mom leaving the hospital.  I packed his t-shirt and brought it home early.  Too early.  Hence, the hospital gown.

Happy,

Katina

PS:  Here are the links:

From UCSF:  http://www.ucsf.edu/news/2013/05/106141/strike-impacts-medical-services-ucsf and http://www.ucsf.edu/news/2013/05/106096/court-issues-injunction-limiting-strike-uc-medical-centers
From the Union:  http://www.afscme3299.org/
From the media (I didn't search exhaustively, but these are top hits):  http://www.latimes.com/local/lanow/la-me-ln-ucsf-strike-20130521,0,5894812.story and http://www.sfgate.com/bayarea/article/UCSF-Medical-Center-workers-strike-4536366.php

Some random, and not so random things I've realized I'm thankful for...

In no particular order, just jotting these down as they come into my head.

• I got my driver's license three years ago.  Boy would this be difficult if I were navigating public transit to and from the hospital.
• The Internet.  It helps combat hospital boredom, enables me to research medical stuff, coordinates our support network, and allows me, of course, to write into the void - to all of you.  And, as a plug, if you are interested in helping us - check out this old post  :http://forgodandcheese.blogspot.com/2013/05/help-brother-out.html
• Amazon Prime.  Need I say more?
• Modern medicine.
• My mom.  She is so, so helpful.  
• Tobias Funke (excuse the missing umlaut, that is not easy to figure out in blogger) is coming baaaack.  [Giving credit where credit is due to these images...]

Reassuring you all...

Team Miner:

My mom miraculously got Stella to sleep in her bed all night last night.  And she slept in until after 7 AM.  Lydia also awoke very cheery, and spent a good ten minutes just smiling at me when I took her out of the co-sleeper.

Although the early morning was smooth, the drive to the hospital was awful.  Lydia had been a bit too alert and was over tired and CRANKY.  She screamed basically the entire way to UCSF.  And that, coupled with a raging "need for caffeine" headache made me feel like the world was conspiring against me.

It wasn't just the baby wailing and the headache either.  Many UCSF employees are about to strike tomorrow, and that is pushing the docs here to release Jeff sooner - possibly tomorrow.  Obviously, I'm thrilled to have him home, but anxious about whether this earlier-than-expected discharge is completely medically advisable.  I'm sure it is fine to let Jeff leave, but I still feel unsettled.  And then there's the whole cancer thing.  Fundamentally, this is just no fun.  No fun at all.  So, the point of this post is to (re)assure you all that it is not all fun and games here.  My outlook is not always rosy or funny.  I feel pretty craptastic some of the time.

But, we got to the hospital.  Lydia crashed out in the Ergo (another product endorsement!). I was/am happy to see Jeff.  My mom got me a latte, and I remembered that (at least) I am not the one having a spinal tap with a special bonus of chemo today.  And then Jeff and I roamed the floors of his hospital wing and laughed a little.

First I mused about how life is unpredictable.  I'm realizing that the only thing we can control is our reaction to whatever life throws our way.  You seriously never know what might happen at any point and I am starting to feel that planning for anything is futile.  This is a very strange feeling given my penchant for planning every little thing.  So, I said, "For instance, you could get run over by MUNI anytime."  Jeff chuckled, the joke of course being that the odds of that happening are probably not so improbable. (Photo courtesy of SFGate.)

Then I shared some key, hilarious tweets from the @WhiteFeminist Twitter account with Jeff - the best of which referenced Edward Said.  

White Feminist ‏@WhiteFeminist25 Apr

Um, doesn't this Saïd guy know that 'oriental' is considered an offensive and outdated term?! #AsianCulture #FightOppression #Smh

 Retweeted by Katina Miner

Collapse 

•  Reply 
•  Retweet 
•  Favorite 

And finally, I remembered to be glad that Jeff is almost done with Round One of chemo.  That's a HUGE accomplishment and I'll try to focus on that - for the moment.

Love to everyone,

Katina

Nudist Protest

Now there's a title that might grab your attention. I really don't have much to say about it though.  Other than to mention that we managed to avoid the "Bay to Breakers" drunken-unclothed-insanity today but drove right past a very naked gathering at Castro and Market yesterday on the way back from the hospital. (I thought the recent SF Ordinance was supposed to cut down on all the skin in SF, but the Five-Oh was just standing by, observing.  I don't really have a problem with that, but was kind of surprised)  

Anyway, my poor mom got quite an eyeful. Lydia probably did too. Though I doubt she'll be scarred by it.  Fortunately, Stella was seated on the other side of the car, watching traffic and MUNI (as usual). But I digress. You're not here to read about old, naked men... at least I hope you're not.

This morning Stella had another nice visit with Jeff at the hospital.  She won Candyland again (thanks Hayley!), drew a great picture with Dawn that said "I LOVE YOU PAAP (her spelling for "PAPA")," learned about wild boars from Marty Stouffer in an episode of "Wild America" (thanks Tara!), and split a delicious red popsicle "twin pop" with her Pops, among other fun activities.

Jeff's white blood cell counts are dropping, as expected with the chemo, and he has to get the spinal tap drug tomorrow. Ugh. Despite all the meds, he is still feeling pretty good. He especially enjoyed non-hospital Korean food with Ricky last night.

That he is feeling reasonably well is excellent, of course, but I sure wish we could *know* that the chemo is working. Or better yet, that it could just miraculously zap the cancer and that this would be over in an instant.  I'm guessing that this feeling of impatience and frustration won't go away and might well get worse. It's just really disempowering. It blows.

But our friend Liz sent me an email today and I found it very helpful. For the record, I don't feel like I am required to rise above rage or sadness, or wring deep meaning out of this experience. But, fortunately, at least for the time being, at least in my good moments, I am learning something from it:  Some deeper truths about myself, about "what matters," about love, and (hopefully, with time) I will learn more about patience and dwelling in uncertainty.

So, this is from Liz. Hope it strikes a chord with someone else too.

"I hope you don't feel like you have to be achieving some kind of higher level of understanding of the world just because your husband has cancer.  I mean, if that's how it works out, then great.  But fundamentally, it sucks, and it's no weakness or failing to be sad and angry about it.  I think there can be a weird kind of pressure on people in difficult health situations to find a deeper meaning in their struggles, and if that's a narrative that makes it easier for you to deal with the situation, then by all means use it!  But if not, then f$&! it."

Amen!

Katina

"Comfort In, Dump Out"

This article is so wise.  Would apply to all kinds of unexpected traumatic situations.  Read, and share widely if you haven't seen it already.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

Wherein I Admit I Listen to Embarrassing Music

Team Miner:  

First, an update on Jeff.  He and Stella are reunited and off to color in the solarium.  Both of them are really happy, which in turn is making me very happy.  

Jeff continues to feel "okay."  The position of his PICC line was irritating him yesterday, and caused his IV lines to keep beeping, but now he has an Ace bandage keeping it in place.  He described the Ace bandage as "his new best friend" a couple minutes ago, so that's a small victory.  And, the anti-nausea meds are working for the time being.  He is tired though:  Physically and of being in the hospital. Please keep praying that the chemo is working and pray for Jeff's spirits. Needless to say, It is no fun to be so cooped up in a hospital of all places.

Secondly, blergh. I put on a relatively brave face here, but I don't feel that way a lot of time. This forum is too public for me to be completely forthright, but here comes a little taste of something raw.

A few weeks ago, I remember that out of the blue one morning I had that old Paula Abdul song, "Promise of a New Day," stuck in my head as I walked home from dropping Stella off at school. (This is: (1) embarrassing, and (2) a telltale sign that I may have been listening to KOIT - the Bay Area's ridonk lite rock station - just a *touch* too much...).

Cheesy as the song is, I have always liked the concept. Today may suck major suckage, but tomorrow will come. "Morning has broken,"or will soon break, so to speak.

Well, it's been almost three weeks since our lives turned upside down. Although it is pointless and probably counterproductive, I find myself wishing this was all a dream.

And although I am truly hopeful, it feels trite a lot of the time to look forward to a new day. All I want is to go back to the old normal.  I am trying to cherish moments (oh jeez, now a not-so-veiled Madonna reference to date me again), and embrace uncertainty, but I just want to rewind and re-record our lives so we can skip over this nasty episode entirely.

But, I can't. 

Thus, to end on less of a downer, I will say again that I AM learning from this and I AM growing. And despite all the suckage, I am grateful for that.  I am also falling more in love with Jeff and with my family and friends every day.

Thank you all for your amazing support.  I can't possibly give shout outs to everyone who is helping us here, but I am deeply thankful.

Katina

Day Three

Team Miner,

I'm reporting here from Jeff's hospital room desk overlooking Golden Gate Park.  [I hope he will be so lucky to land this awesome room on subsequent in-patient visits.]  Yesterday was densely foggy, but today we can see the Pacific Ocean and the top of the Golden Gate Bridge.  Jeff finished grading student papers yesterday and is currently preparing to discuss "The Great Transformation" with Corey for their academic book duo/club this afternoon.  The Grandmas are off entertaining Lydia, Stella is in school, so I am footloose and fancy free to bloggy blog blog.

As far as chemo is concerned, Jeff isn't really feeling too bad yet.  He's tired, but not deeply fatigued.  And he still has an appetite.  So, we can hope that the prayers for these drugs to wreak utterly murderous havoc on the cancer all while allowing Jeff to feel "pretty okay" are working.

I don't really have the energy or inspiration to post anything too thematic or deep today.  Noting my blog stats, however, it would seem that many of you are eagerly awaiting a new post, so I'll try to make this at least somewhat substantive.  [Alternatively, a handful of you may be visiting the page several times a day...  I'll take that, too.]

For substance then, I will tell you about what's been going on with Stella lately.  First, I'll recommend the book Jeff's aunt Sue recently sent to us for Stella:

This book would be a comfort, I think, for any kid going through separation from a person they love.  It is not overtly religious, so I think it would be appropriate for families with different, or no, religious beliefs.  I like that it uses rather generic and kid-appropriate language.  In my opinion, it would even help soothe kids through simple bedtime anxiety when they feel lonely in a dark room on their own. The general concept is that everyone has an "invisible string" that connects them to the people they love.

Sue also made Stella an beautiful braided cord with four colored strings - to symbolize Jeff, me, Stella, and Lydia - for her to remember that our family is always together.  This "visible cord" is helping her as well.

Another helpful thing we've done for Stella involves a new stuffed animal.  Tyler gave Stella and Jeff an awesome bear puppet about a week or so ago.  Stella LOVES bears.  They are probably her second favorite animal after the penguin, in particular, the Emperor Penguin.  [Look, a cute picture of a penguin chick!  I'll have to search for this book at the library...]

Anyway, I think her weird affinity for such a fearsome animal as a bear stems from one of the recurring stories Jeff tells to her.  One such story is about "Rob" the bear and his four ghost friends, Bob, Bob, Bob, and Bob.  It is a huge hit with Stella who calls the Bobs "ghost-es."  Since Stella has had some trouble falling back to sleep when she wakes up and realizes Papa is not at home, yesterday Papa put all of his hugs and kisses into Rob the bear and I took him home to Stella.  Stella was delighted to cuddle with Rob and slept with him all night.  She only woke up once and was much more consolable than usual, so... Rob the bear FTW!

I'll try to post again soon.  Please keep sending the cancer cells mean and vicious vibes and pray that Jeff will be healthy enough to come home soon after this first round of chemo is over.

Love to you all,

Katina