'Tis the Season

Those who know me know that I love Christmas.  Love it.  And not just because the amount of Wham! on the radio increases exponentially during this season.  I’ve always enjoyed the whole experience, from cutting down a tree, to giving gifts to, all while spending time with family and friends. 

This year has been a Christmas like no other.  I’ll be honest in saying that there has been a certain amount of feeling sorry for myself.  However, the free time that I’ve had has also made me realize what’s really important.  Now, I’m not going to claim that one viewing of “A Christmas Carol” has turned my into Bob Cratchit, saying that we’re the richest people in town because of the strength of our family, but a couple events over the past few weeks have reinforced how lucky we are. 

I’ve recently increased my work as a volunteer board member for a local non-profit agency that helps people buy homes, many of which are in the central city and owned by banks or the city as a result of foreclosure.  The people we assist work their asses off to create a home for their family – 2^nd jobs, 3^rd jobs, sweat equity in the home repairs.  Home ownership is something many of them never thought was possible, and will likely be highlight of not only their year, but likely their life. 

Yesterday, I attended a workforce education seminar that is required by the state office that administers unemployment.  Basically, it’s a workshop to make sure people know of all the resources that are available to job seekers.  Having worked for one of those resources many years ago, I was familiar with many of the programs, but it was still striking to be reminded of the challenges that many job seekers face.  While constantly seeking to expand my network of contacts sometimes feels tedious and frustrating, I can’t imagine having to spend the morning taking multiple busses just to get to a library or job center to use a computer.

Many people have asked how they can help us through this difficult time.  If you really want to help, please do something for someone who really needs it.  That’s not this family.  Put a toy in the Toys for Tots bin, volunteer some time at a food pantry, or just drop some change in the kettle.  Sometimes we all forget (and I’m including myself here) that if you’re reading this on your iPhone, in a warm house, or with a $4 latte in your hand, you’re in a better spot than the majority of the world.

Finally, an update on the big things – as I type this, Jacque is at whole-brain radiation appointment #13 (of 15).  So far, so good, with minimal side effects.  We won’t know the success of this until her next scan, scheduled for early February, but we’re hopeful that the radiation and clinical trial drugs are working their own Festivus miracle as we speak.  My job search is coming along, the aforementioned non-profit board / volunteer work may lead to some actual (read: paying) job opportunities.  I’m excited that I might be able to turn this work that is personally fulfilling to me into a career.  Stay tuned.

From our family to yours, Merry Christmas, Hanukkah, Kwanzaa, Solstice or other non-denominational winter celebration of your choice!  I’ve never been a religious man, but maybe Tiny Tim was onto something: “God bless us, every one!”

Glorify

I had a great conversation yesterday with a friend that I hadn't seen in so long. It was one of those conversations that I recognized as special at the time but the more I've replayed it in my head the better and better it has gotten. A GIFT of a conversation it was.

We were catching up and I updated him on my life and he updated me on his and in the process brought up his sister-in-law who has experienced health challenges also and has been an absolute inspiration by choosing the word GLORIFY as a motto at this point in her life.

Woah. How unexpected, right? Glorify. At a time when you could feel a little entitled to... I don't know, a more introverted approach at least, she chooses a proactive positive. Not just to take things in and process them positively, but Go. Out. and Glorify.

I love that.

What I really like about it is that it is unexpected. And the guts of it actually. I like that for life all over. I like it for my mash-up family.

When you enter into a mash-up, it really feels like there is an expectation of how you are supposed to be (well, I have felt that anyway, maybe not everyone does). How everyone is supposed to feel, the sorts of challenges you should experience, the emotions, the opportunities, the limitations. There are established expectations. Status quos. Paradigms that you walk into. And this is true for all sorts of stuff that we encounter on our life journey, we all have this stuff. Adding an illness and job loss layers on additional expectations from, I don't know...the air?

So my friend and I went there and encouraged each other to not have to BE there, in the air, with those expectations. We can choose an unexpected path. It won't of course eliminate emotions and challenges, but I think it takes some of the (maybe) oppression away - of thinking we should feel a certain way and do certain things - and puts the power in us. Who doesn't like power? (Not It!)

Everyone has their stuff, right? Take a look at the stuff and have conversations (!) about them. It's a work in progress for everyone, but one thing by one thing, I think we can release ourselves from a lot of the more-toxic expectations and be more joyful people. Let's dooooo it.

News Updates:


12/7/14

• Brian continues really good job search networking. That guy kills it with dedication. Looking at some good opportunities next week! And selfishly it's really great to have him home, I'm not sure how we will return to dual full-time work!! But OMG, I understand it must be such a struggle to get up in the a.m. and stay motivated - especially with as many gray days as we've had lately. I would be...not. that. good. #bedsores. Absolute appreciation to his work ethic.
• Jacque completed Day 9 of radiation. 6 days to go! Not a walk in the park, but really not that bad. Have a bit of respiratory virus which kicked my arse until cough syrup with codeine came to the rescue. Tis the season for simple gifts and I currently am counting codeine as such a gift #probablynotright.
• Kids are great. Christmas cards being addressed this weekend!

Stress

Stressed is not how God intended us to be.

This is really simple. It is obvious! But sometimes I find it so hard to just get down to it and find the source of the stress and work to eliminate it.

I have been marveling in the simplicity of this statement since I heard it last Sunday. Oh my gosh, we are all so BUSY - especially this time of year. And to some extent, busy is fun. But when it turns stressful, I just have to remind myself to say no. It's not my best look. Stressed is not part of my best self - that I'm concentrating on finding now during the holidays and through my treatment and through this life!

Working to identify if I've allowed stress to accompany me as a "friend" on this journey. And consciously giving myself permission to bid it goodbye when I find it.

Hope you will join me!!

PSA

This is a PSA. But not like the factual, possibly medically-verified PSA you might be familiar with. This is another kind.

Don't try to fact check this or Snoops it or whatever. I come to you admitting that multiple doctors have resisted entertaining my concepts here. And yet I bring them to you, as a public service, because I care. 

Be careful. With the Senna.
 

It is possible that in efforts to, um, privately take care of some issues, you could become lax in respect for the Senna and think that it would be helpful to take more than the recommended dose. 

In which case, much to your disbelief I would suspect, you might experience no relief whatsoever ever to the circumstances that compelled you toward your liberal use of the Senna. 

And whilst not doing its typical thing the Senna may be stripping your body of all the soft and tender juices that protect your joints from excruciating pain - causing you to wake in the night with not a comfort in site. No pain meds will help, no sleeping position, no walking it off (if you can walk at all!) 

This will last for four days after you have sworn off the Senna and hid it in the back of the med closet pretending you were completely responsible with its use. And you will be forced to wait, sleeplessly. In pain. It just needs to work its way out and the tender juices need to build back up again. There is no rushing it. And it is awful. 

OR. OK, this is risky, but interesting. OR, as an alternative, IF you are feeling particularly down about life, I recommend you DO THIS. All your other troubles will pale in comparison. And then after the sleepless nights of joint pain, when you are near death with frustration over where this is coming from and how you will make it stop...then the night will come when you get sleep. No joint pain. And you will experience the most JOY you have ever felt. The sun will be brighter, the world will be kinder, You will feel ahhh-mazing.

Please be advised.
Thank you.

Circus Peanuts

Yesterday was supposed to be my first day of clinical trial drug and radiation but because not everything always goes as planned, we had to abort the mission yesterday and TODAY ended up to be Day 1.

These little babies to the left are my clinical trial drug. They are a chemotherapy drug. They have shown the ability of reaching the brain (busting through the blood-brain barrier), attaching to the cancer and enhancing the effects of the radiation therapy.

They are super cute right? Total circus peanuts! Today I talked to each one of them to tell them what to do and to let them know they were going to awesome at it. They totally listened. 4 little pug pills sent on a mission every day for the next 40 days. 160 rock stars.

So I have to fast 2 hours before the circus peanuts and I have our little moment. And then I fast for 1 hour after. I have to time this ritual so that I will ingest the drug between 6 and 3 hours before receiving the radiation therapy.  I have to log the time on a chart for the trial data. I take the drugs every single day through radiation (even though I only have therapy M-F) and then I continue taking it for 21 days after therapy ends.

The whole brain radiation therapy (WBRT) is pretty simple. They made me a mesh mask that clamps down onto the table (with my face inside of course). I'm sure this could be a sketchy situation for claustrophobic people. Fortunately, I am not one of those people. I accept their offer for a warm blanket (because the answer to that is always yes), lay down on my back and lay still.

Today was about 20 minutes because they did x-rays prior to the treatment. I spent the initial minutes talking to my brain - which was actually harder than talking to the circus peanuts. I wanted to tell it to just be relaxed and be open... but then I fell asleep. So, clearly I rocked that!

That'll be on repeat for a few weeks now.

In other news we decorated turkey cutout cookies because we had all the boys tonight (and some naked turkeys) and the kids were totally (sugar) high until lights out. I am slightly afraid of the hangover that will be the morning.

The View from the Co-Pilot Seat

Now that we’ve written a few blog posts, it’s time to address the elephant in the room. 

Many of you have heard Jacque’s story already, but for everyone else, this is how it went from my point of view.  This is also helpful for us, as story gets easier the more we tell it, particularly for me, as this is my first experience with cancer.

Roughly six weeks ago, Jacque was completing a big project at work that required a lot of travel and long hours, culminating with a week in San Francisco for the installation, which entailed her working a string of 18-hour days.  Around this time, she began having headaches and fatigue, along with some occasional eye issues.  None of the symptoms seemed severe, seemingly related or prolonged.  We chalked it up to the stress of work and perhaps wearing her contacts too long.  Once her job calmed down, Jacque ordered new glasses, got a massage and went to the chiropractor.  However, the headaches persisted.  While headaches are rare for her, we figured it was exhaustion from work.  Jacque’s counterpart on the project commented that he was having trouble adjusting to a normal schedule as well, so we didn’t think much of it.  Maybe it was an ear infection.  Perhaps mono.  Jacque went to the walk-in clinic and returned with only a prescription to relax and instructions to check in with her primary physician.

The following weekend, I was in Denver, returning late Tuesday night.  As some of you know, Tuesday is the day we have all four of our kids, meaning Jacque needed to handle pick up, dinner, homework and bedtime for all of them.  She was still not feeling well, and when I called her from the airport on Tuesday evening, I could tell something was amiss.  The vision issues (flickering peripheral vision) was getting worse, to the point where she had to pull over on the way home from Josh & Drew’s school.  Upon picking up Duke and Charlie, she was struggling to find words.  On the phone, she sounded like she was slurring and she said she was having some mouth numbness, like when you return from the dentist.

At this point, I was worried. I suggested she at least make arrangements for the kids to go to our exes’ houses so that she could sleep.  When she said she had already done that (a rarity), I knew she needed help.  My immediate thought was that she was having a stroke.    Her idea was to sleep and go to the aforementioned primary physician appointment, scheduled for the next day.  Thinking stroke, I told her she needed to see someone tonight.  She called her friend Becky, who graciously took her to the emergency room at Froedtert. 

By now, I was boarding the plane in Denver.  Becky kept me updated on their progress (thank you Southwest wi-fi).  The ER physicians had determined that is was not a stroke, so Jacque waited for a more thorough exam.  Around the time I landed, Becky texted to let me know that they had given Jacque drugs for a migraine and sent her for a CT scan to rule out anything neurological.  That made sense – I get migraines occasionally, and the headache, light sensitivity, etc. are somewhat consistent with my symptoms, so I drove to the hospital ready to pick Jacque up and go home.

I arrived at the ER, got the visitor badge and headed to her room.  At the same time, the ER physician approached the room from the other direction.  We introduced ourselves and went in.  I didn’t say much more than “hello” to Jacque before he spoke.  I’ll never forget the next words I heard. “Jacque, the scan shows lesions on your brain that are consistent with metastasized cancer.”

We thought we were there for a migraine.

An MRI yielded the same result, and we were admitted to the hospital at 4:00AM to manage the pain and see the specialists.  Wednesday, Thursday and Friday consisted of chest, abdominal and pelvic scans to see if there were additional abnormalities, as well as me going from the hospital room to job interviews (Pro Tip – if at all possible, avoid doing this).  We discovered several spots on Jacque’s lung.  Blessing and a curse here – additional masses (not good).  Masses in places that are easier to biopsy than the brain (good).  Jacque had a biopsy on her lung on Friday and we were released to go home to wait for the results that would determine the treatment plan. 

Side note:  When you’re in the hospital, you lose track of what time it is.  Everything is always on – the coffee shop is open, there are people everywhere, everyone is working.  So it’s a little jarring when they tell you that biopsy results (ie – the “yes it’s cancer / no it’s not cancer” phone call) will come in 3-5 business days.  Going from 3AM blood pressure checks to banker’s hours is not easy.

The good news about going home (other than being home) was that Jacque’s pain was under control.  She was given steroids to control the swelling (and thus the pain) in her head.  We had a full weekend planned, and managed to do everything on our calendar – a concert Friday night and the Badger game (complete with tailgating!) on Saturday.  Jacque’s been feeling good, and we’ve continued to live life as usual, including travel, Thanksgiving with family, and even a little Packer Sunday-Funday.

We’ve also met with our medical team, and put a plan in place.  This is where it gets a little heavy.  Those biopsy results?   Positive for the same type of cancer that Jacque beat in 2011.  We have a great team, though our oncologist said more words that I’ll never forget, “technically, you’ll never be cancer-free again.”  That one takes your breath away. 

Through some discussion, we learned that means Jacque will be taking cancer drugs forever.  That’s the long-term treatment.  The short-term treatment is three weeks of daily, whole-brain radiation starting today.  Then a break for a couple weeks, conveniently timed with our Christmas celebrations in Wisconsin Dells (with kids) and NYC (no kids).  After the first of the year, she’ll start chemo to address the cancer in the lung.  The hope is that she responds well to these treatments so that she’s just on the long-term drug and is symptom-free.  Our doctor has a patient who has been this way for nearly twenty years.

We know that cancer will always be part of our lives.  Jacque has already beat it once, and the treatment options have come a long way, even since 2011.  She’s part of a clinical trial for this exact scenario.  We were randomly assigned to the group that will get the drug, along with the normal radiation treatments.  This is a late-stage trial that has already shown promising results, so we’re thankful to have the chance to participate in the study.

Many of you have asked how you can help.  The outpouring of support has been amazing.  At this point, we don’t need much other than thoughts and prayers.  The radiation side effects should be minimal, so we’re treating December as “business as usual.”  If we get to the point where we need help, we’ll let everyone know. 

Ok, that was a lot.  But we’re not feeling sorry for ourselves.  Jacque feels good, and we’re confident in the treatment.  We’re going to live the life we have planned, cancer or no cancer.  Whenever we’ve faced challenges in the past, we’ve said “onward and upward.”  This is no different.