Looking Back & Moving Forward

This is certainly not the picture I expected to be posting today, on the day on which our wedding was scheduled.  However, I’ve accepted the fact that this is the reality.  I’ve come a long way since Jacque passed, and I feel proud of the progress I’ve made. 

I’m also incredibly thankful for the gifts Jacque left me.  The years I spent with her are time I’ll always treasure.  I wouldn’t change anything about that time, other than to make it last longer.  However, the things I’ve discovered after she left are the most striking to me.

 

The events of the past year have impacted far more relationships than just the one I had with Jacque.  Close friends have become closer, old friends have come back into my life, and new people have appeared – people that I never would have met, had I not experienced this terrible event.

I’ve also realized how much Jacque did to prepare me for life after she left.  We talked about the house, the kids, and life.  But it never felt like planning.  It felt like reassuring.  We weren’t talking about “life after Jacque.”  I don’t know what we were talking about, but it made me feel more comfortable, and it wasn’t until much later that I realized that.  I don’t know what kind of jedi mind tricks she was using, and I certainly don’t know how she did it while she was sick, but I have no doubt that it was those conversations that have made me feel like I can get through this, and get through it healthy. That's not to say there haven't been sad days, angry moments, & things I wish we would have said or done - there definitely have been, but I'm at peace with all of it. 

I’ve often said that Jacque was the kind of person that you want to be a better person.  That’s the legacy I carry with me in her honor, and it has made me a better person in all of my relationships.  So while we’re not getting married today, I carry a part of Jacque with me, as I always will.

Summerfest

As my friends and family can attest, I've always enjoyed Summerfest.  From the moment I could drive there alone, it has been a multiple-day-every-year thing.  Meeting Jacque took that enjoyment to another level.  Somehow, she was someone who loved Summerfest even more than I did.  It can't be a coincidence that the all-day-every-day Power Pass admission deal started the first year we went to Summerfest together. 

So here I am, Summerfest in full swing, without Jacque.  I didn't know what to expect - would I want to go at all?  Would it be depressing to be there without her?  I've been a couple times already, and it's been strangely comforting.  There are definitely some sad moments, but it's felt good to be in a happy place, with happy memories.  Jacque would be proud, I've planned who I'm going to see and have been binge-listening to their music so that I know what I'm hearing.

In the end, I think of Summerfest like I think of many things these days.  I loved it before I met Jacque, and like a lot of things, she made it even better.  Now that she is gone, it's my job to keep that same level of fun & enjoyment.  Not only at Summerfest, but in all aspects of my life.  It's what she would have wanted and it's what I want.  It's amazing to think about the impact someone can have on your life in only a few short years.  But Jacque had that kind of spirit.  I told her this once, and I said it at the service, Jacque was the kind of person that made you want to be a better person.  That's the inspiration I carry with me today, at Summerfest, standing on a picnic table.

Music is Life

Music is awesome.  I've always had music around - it's rare that I'm in the house, car, or office without a radio on around me.  I've tried talk radio, sports talk radio and NPR, and while some of that is interesting, it can't take the place of music for me.

I found that when Jacque died, I was often sitting alone in a silent house.  Music wasn't comforting for me.  Every song seemed depressing because it was about something sad, or I just interpreted it as sad.  Up  until recently, I was never really one who thought that a song spoke to me.  I really didn't even listen to the lyrics.  I liked a song if it had a good beat, which makes me sound like I'm on Dance Fever (kids, you'll have to YouTube that).  Sitting in silence didn't help my mood, and I really don't think it helped me grieve, either.  I don't think I was doing it consciously, I was just in such a fog.

But now, I'm starting to feel like I'm getting back to a normal level of functioning.  I can't stand any silence, and I'm back to singing around the house #tonedeaf.  And it feels good!  Even songs that aren't the happiest of topics feel good to hear.  I mean, if you're rocking out to The Cure, you've got to be doing something right!  Maybe on the days when I'm sick of writing about grief, I'll write about music.  I like that, Jacque would have liked that, and I think it fits with the mission with which we started this blog.

Until then, here's that upbeat song with downbeat lyrics that I was singing in the car this afternoon.

Eye-Opening Support

I went to my first support group meeting tonight.  If you would have told me five years ago that I'd be going to a support group for anything, I would have said you were crazy.  But, here we are, and there I was. 

I don't know what I was expecting.  This was a "Young Widow/Widower" group, and the age range was a couple of us in our mid (ok, late) 30's up to people in their 60's.  It was nice to talk about all these challenges with some like-minded people, but other than one other recently-widowed person, all of them were at least a year ahead of me.  The scariest part?  Some of them are struggling.  Badly.  It's hard to be six weeks in and hear that "the second year is really hard." I don't know when I thought rock bottom would be, but I surely wasn't thinking it wouldn't be for a couple years. 

I don't know what I was hoping to get out of this group.  Whatever it was, I'm not sure if I found it.  I certainly didn't feel better afterwards.  It was comforting to hear that they were all impressed that a couple of us were there so close to our loss.  If the goal is to know it's ok to grieve, that it will take time, and that there will be a "new normal," great.  I already know all those things.  I suppose I'll go back, but I'm not sure this is for me.  The conversations I've had with widows in my circle of friends, colleagues and acquaintances have been much more comforting to me.  Perhaps it's because they're my age, are in my circle, or just have more in common with me. 

Overall, I'm feeling pretty good.  There have been some highs and lows this week, but I'm continuing to learn those triggers and work to manage them.  Grief management is a lot of damn work, but that's ok, I'm a good worker.

Dammit Keanu

I was sitting at Duke's Cub Scout meeting tonight, poking around on Facebook while Charlie played basketball with another kid who was there with his brother, wishing he was old enough for Scouts.  I came across this article about Keanu Reeves (short version - Keanu has made a ton of money, experienced some tragedy, & is cool).  Nothing earth-shattering, but this quote struck me: “Grief changes shape, but it never ends.”  Crap.

I've talked about this with friends that have experienced loss, and I've talked to other widows.  They've all said some version of this - you're never the same person you were.  Well that sucks.  I really liked the person I was.  This new me, not so great.  I'm sure I'll adjust, but right now, I'm kind of annoying.  I'm not happy, I can't get anything done in my house, and I just feel lost.  I'm ramping up the number of people I'm talking to about this (hello, therapy!).  The problem is, there is a lot I want to talk about - how great my friends have been, how well my job is going, how shitty the Brewers look, and how I'm feeling, but there's only one person I really want to talk to.  Side note, I found a young widow/widower support group, they have a waitlist...WTF, I'm not really in the mood to wait.

So here I am, getting into somewhat of a new routine.  I can do the routine (I'm good with structure and a checklist), but the loneliness, that's another story.  I hate being alone, but I can't fathom finding someone else.  First, because I'm nowhere near ready, but second, because I can't imagine finding anyone as perfect as Jacque.

This is going to be one long road.  Oh wait, it's a road that never ends.  Thanks, Keanu.

The Next Chapter

When I originally thought about this blog post, I figured I'd call it "Epilogue" or something like that.  But then I remembered that Jacque would be really pissed off if I thought about this as the end of anything.  "It's a new beginning" she would tell me.  

So I'm trying to manage this new beginning.  Josh & Drew came to take more of their stuff to their dad's house today, and that wasn't too sad.  It was nice to have all the kids here together for a while.  The hard part is when there's no one here.  It's just me, or me with my kids.  It's incredibly lonely and I'm not really sure how that's going to change.  The nice part is that I have family and friends constantly reaching out to check on me and get me out of the house.  Thank you for all of that, let's keep that up!  But even on a weekend like this, where I saw friends & family, had playdates with other kids, and had a sports junkie's worth of basketball on TV, I was still just sad.

In the eulogy, I mentioned the book of note cards that Jacque kept, and how she'd often pick one out and leave it for me with a little note.  I'd often find them tucked in my sunglass case, or just sitting on the counter when she left for work before me.  As I was going through some papers today, I found the last one she gave to me.  It was on my plate on Valentine's Day morning.  I know (hope?) this will get easier at some point.  I don't know when that day will be, but it is certainly not on Day 11, particularly since there are a million other things just like this scattered around the house.

I don't really know what the point of this post is, but it felt good to write when we were going through all the rest of our challenges (which was completely Jacque's idea), so I figured it was worth a shot tonight.  I'm going to attempt to keep the blog going, because the Swan Positive message is a good one.  I might not advertise all the posts on Facebook, or write that frequently, but I owe it to Jacque to try.

Just Some Normal Stuff

Treatment #2 is now circulating inside my body doing its wonderful THANG! Awesome, awesome.

Our apologies for not providing a more timely update after my last post. We know so many of you think of us and pray for us. We will totally try to provide updates more often! But if you don't hear from us and you are wondering how we're doing, please don't hesitate to reach out - don't think you'd be bothering us. More contact with friends is a silver lining to all of this messiness! We are feeling positive and hopeful and while the treatment is doing its thing, we're doing ours. We're doing normal stuff. No news is not at all bad news, so don't ever worry or wonder, just reach out!


We road-tripped to Minneapolis this past weekend! It was so fun to take in a basketball game at my alma mater (Gophers 79, Illini 71) and enjoy the company of so many friends - Alicia and Aaron, Danielle, Chris and Laura, Julie and Jeff.



This is me "normally" running
around, picking up kids from
school, not updating the blog.
oops.

This road trip, as well as life stuff like going to work (BOTH OF US!!), keeping butts in seats at dinnertime, delivering kiddos to sports practices and games (basketball Josh, baseball, basketball Drew, track, archery and tap), pinewood derby, wedding planning, etc. kept us away from the blog longer than expected!

After my first treatment last week, each day I've felt a little bit different. I haven't felt AWESOME, but my back pain has reduced considerably - which was a surprise. Physically my feelings have ranged from must-sleep-now to pretty-darn-good!

If this week goes similarly, I can totally do that! Looking forward to a weekend at home - kid time and Super Bowl and then Brian's birthday week - Feb 3! Life is good.

Take care y'all!

Back in the Saddle

If you've been following along, you'll know that when we discovered Jacque's cancer, our house was already in a state of flux because of my period of unemployment.  While this initially seemed like terrible timing, it turned out to be quite nice, as I was able to stay with Jacque for all of her initial hospital stay, and attend subsequent doctor visits without having to fit work into the mix. 

When it became apparent that finding a new job for me was going to be a necessity, we decided that I needed to take time to figure out what I wanted to do (spoiler alert - not banking).  After much networking, and many calls, emails and coffee meetings,  I'm happy to report that I've accepted a position with Select Milwaukee, and will be leading their Homeownership Programs, beginning in the near future.  I'm excited to get back to my non-profit roots; I began my career with a non-profit and have continued to dabble in them over the years.

Select Milwaukee is a fantastic organization dedicated to achieving, preserving and sustaining the dream of home ownership.  Much of their community development efforts focus on first-time home buyers and city or bank-owned foreclosures.  Their services fill a need in the community, and they're experts in delivering those services.  I'm excited get started!

So that's one piece of the puzzle solved.  Jacque starts crushing cancer with chemotherapy tomorrow, where I'm sure she'll do fabulously.  As always, thanks for your thoughts and support.

When Less is More. And More is Less. Health Update

One of the symptoms that originally led to my ER visit back in November was a vision issue that involves some flickering and black spots and generally unacceptable eyesight - temporarily. After all the dirty laundry came out, this symptom was easily attributed to brain swelling caused by the cancer lesions.

I started on a steroid to reduce this swelling. And then I got radiation, to reduce the lesion that was causing the main swelling. And then, 20 days passed after radiation, and the swelling from the radiation itself should have been well beyond me. And yet the flickering. There it was one day. I called the doctor. We adjusted the steroid. Then there is was another day. Why is this happening still?? So we did a brain MRI to check things out. Guess what. (Wait for it...)

FEWER lesions. SMALLER lesions! AND, this is earlier than we really should have been looking for full progress. Things are still cooking up there from the clinical trial drug and the radiation. We'll scan again in March and things should look mighty fine! Less is more. :)

I am scheduled to start my chemotherapy regimen on Wednesday, January 21. I'm doing a combo of Taxol, Herceptin and Perjeta. I'll go in once each week for a combination of 3, 2 or 1 of those. This is to treat the cancer mets in my lung and body. The last time we scanned to see those mets was back in November, so my oncologist ordered a new scan so we could get fresh information to know exactly what we were up against. Turns out the little cancer town in my body has quickly developed into cancer metropolis. We've got significantly more cancer to kill. More is less. :(

The type of cancer I have, HER2+, is very aggressive. Impressively aggressive I guess! That's the bad news about HER2+ cases. The good news is there are some really great drugs/treatments that have been developed recently (last 15 years, last 5 years, etc.) that specifically attack the HER2 protein that feeds the cells.

I'm trying not to be discouraged by this new state of the state because haven't even started the chemo treatment yet! So it's not illogical that all these cancer cells are taking advantage of their free-love window and multiplying with abandon.

One bummer of the new mets is that they have developed on bones and that hurts me! I guess they emit a substance that eats away at the bone and that causes pain (check) and if left untreated, bone density issues, fractures, etc. Hopefully the chemo can catch up before this becomes an issue. Currently I am just on an entry level prescription pain med and Tylenol and getting by. We'll be adding one more drug to my weekly treatments that will block the secretion of this bone-eating substance which will help my pain. And we can always bump up the bad-ass on my prescription. 

And then there's that vision issues. We didn't find the reason! We'll have to keep tracking it but it could be that the cancer is in my spinal fluid (not awesome) which would be an explanation for neurological anomalies. Seriously hoping we don't have to explore that. I have a full spine MRI on Tuesday that will give us more info on that.

At this point Wednesday cannot come soon enough! Other than the back/hip pain I'm feeling really quite good.

We have a weekend of kid basketball, baseball, swimming. It's one of those when I think I'll be better off if I don't plan on getting ANYTHING crossed off my own to-do list! Maybe if I can just get that Christmas tree down....OH heck, and I finished my blog post! #workaholic #coffeebreak

Wiggin' Out

Let's talk about wigs.  Not these Whigs, not these Whigs, but actual wigs.  As previously noted, the combination of whole brain radiation therapy and the clinical trial drug conspired to cause Jacque's hair to begin to fall out.  This was not a big deal, as we knew we'd get to this point once chemo started (scheduled for next Wednesday).  Once it had thinned to the point that she couldn't stand it anymore, she took it all off, as we joked about on Facebook (if you haven't watched this, actually even if you have, it's worth your two minutes).  While we waited for the wig to arrive, she generally wore scarves or hats. 

However, one morning she came out of the bedroom with nothing on, which blew some of the kids' minds.  I should note that we've had some discussions with all the kids about how Jacque has cancer, will be seeing lots of doctors and might have some side effects.  Apparently, I got sidetracked during that conversation with Duke & Charlie (and to be fair, if you've ever held a conversation with 5-year old Charlie, you know how easy that is) and neglected to mention the hair loss.  Duke was convinced, I mean, CONVINCED, that she was going to go back into the bedroom and come out with hair.  We all had a good laugh about that.  Pro tip - in the absence of actual cancer, a bald cap could be a lot of fun with kids.

So as of this week, Jacque is now sporting this hot 'do!

Special thanks to everyone that has helped out, offered to help, or just sent positive vibes our way.  Good things are happening, stay tuned!

Drugs and Hugs: That's What This One Turned Out to Be

I wasn't feeling great this morning but Starbucks in
front of the Rockefeller Center tree and ice
rink with my love?!?! Pinch me!!

I think blogging is harder than I thought it would be! So one of my "resolutions" is to write more often. Turns out I don't have any other resolutions so I guess it's go time!



So the holiday season, yeah, wow. It was all the things. And all the things really did make it so great. I'm feeling nostalgic about it for sure, but admittedly I'm drugged today...but really! truly, we did have such special times this year with our families, our friends and each other. I absolutely do give credit to our increased appreciation of love and life for amp'ing up my crush on Christmas...ohhh, and the trip to New York City, which was...just downright luxurious. 

And in a our mash-up we don't get to spend everyday with our kiddos on winter break, so we still have parenting energy! Looking forward to expending the heck out of that this weekend.


Here is an update on my health.
I completed my Whole Brain Radiation Therapy (WBRT) on 12/22. That is the plan for the brain because most chemotherapy drugs can't reach the brain.

WBRT does cause hair thinning because the hair follicles have nowhere to hide, they just get tired and give up. In addition, the clinical trial drug can also cause hair thinning.  My hair followed direction like a champ and is almost completely gone. Wig consultation to the rescue and I should be sporting a super-cute honey blond pixie cut in about 10 days. Hats in the meantime.

I will have another MRI in February to take a look at how well we did.

Overall I've felt less awesome than I've hoped. I have been on a steroid since original diagnosis to combat the side effects of brain swelling. The radiation will have reduced the size of the brain lesions that were causing the original swelling, but radiation also can cause swelling so I stayed on the steroid. The steroid causes some of its own side effects - mainly extremely reduced muscle tone in my legs as evident when attempting to go up stairs, getting up from a crouched position and getting in my Pilot. So, there was a decent amount of desire to eventually get off the steroid. And then there was the taper-schedule. Which is about the time that I realized how AMAZING the steroid was making me feel. So I struggled a bit over the holidays trying to find a balance between coming off the steroid and standing upright.

Fortunately we were able to consult with the Froedtert team and have a plan. The culprit might be the med I'm taking to protect the blood vessels in my brain. Radiation can alter brain activity (reduction in short term memory, decision making, filtering...) but the risk would be low for me since I'm younger and a non-smoker. I was taking it anyway, because, you know, why not. But cost-benefit analysis at this point said I'd taper that down in favor of feeling good. This is great because, later, when I "accidentally" utter unfiltered commentary, I can blame it on this ;)

Today I had an outpatient procedure to put a medi-port in (again) which is a little device that allows my cancer drugs to be mainlined without the hassle of always having to find a vein for the I.V.

We'll meet with our medical oncologist on Tuesday to get the plan for chemotherapy - which is how we will address the lesions in my lung. I know a little bit about it and know that I'll start the second week in January. But we'll get the whole scoop on Tuesday.

And I have only TEN MORE DAYS of my clinical trial drug - the circus peanuts. That is awesome because as excited as I am to be on it I will NOT at all miss taking those 4 huge pills everyday.

Thank you so much everyone for your continued support and well wishes. We are sending well wishes to all of you as well as we enter the greyness and coldness of winter. It can be HARSH on spirit and body, we all know! So reach out and hug your friends and loved ones - even acquaintances might need a hug (maybe ask first? or not.) - it will warm your hearts and warm you both up! And for loved ones I recently read that you should stand as close together as possible and hold your hugs for 20 seconds. This amount of time allows all the "happy stuff" to percolate and result in a real feeling of connection that we aren't going to get with a quick little A-frame number. #hug20.

Happy 2015 fabulous people!!

'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.

Football and Dress Up

Brian transitioned from active Dad duty this afternoon into the comfort of a friend's couch with snacks and beer and football. I picture it as the Calgon of men. Actually I'd chose that way before Calgon as well!

Jacque met girlfriends for a lunch date and an appointment (just for fun) at Davids Bridal. We reminisced about trying on Prom dresses together in Wausau when we were much younger (although old enough to be prom girls' mothers) and that is how I anticipated the trip to DB today. Just fun(ny) playing dress up. But whoopsie, found my dress!!! Ha! Loooove it. And what a treat to have that done. 

Wonderful days all around finished off with dinner with Brian's sister and BIL. Holiday weekends are so luxurious and we are so in the mood to be around our loving friends and family.   

Stressors

These are things that are stressing us today.

1. We've learned recently that Jacque's breast cancer has returned.
2. Brian is in the midst of a job search.
3. Our elderly cat is now completely ignoring her personal hygiene and none of us really feel like helping her with that.

That's a heavy list. I get it. So I'll opt to write about the cat.

Kitty's hygiene has turned into a curious issue for me. I have had cats for many years. While I wouldn't say I was meticulous about their care all the time, I was pretty reliable. Cleaning the litter box each night was part of my wash face+brush teeth+go to the bathroom bedtime routine. My most recent lovey cat passed away about 6 months prior to Brian and I moving in together.

Since moving in with Kitty I am totally copping an attitude about litter box duty and expecting Brian to do it and getting annoyed when it's not done. Although annoyed, I'm still not doing it. Let's work to come to a shared understanding that this is dumb.  (Are we there? Thanks.) Brian DOES clean the litter box. But if it is not done when I want it done (daily), I need to just DO. IT.  This may be a request for a little kick in the butt. Shoot me a text some random day if you would please to remind me that the energy to clean the kitty litter is so small compared to the energy spent (wasted) not doing it. So simple. Stressor gone.

As far as giving kitty a bath though, I guess we're still uncertain if that would be a good idea. Is anyone else we know a cat-bather? Do tell.

For the other stress points, we'll keep talking. That is what this blog is for - to keep you informed on our lives and to give you an opportunity to keep us honest in our goal to celebrate all the positives about this beautiful life we share.

Thankfulness seen anew

As opening day of the new blog, we'll go with a  bit of an opening statement.

Brian and I have talked about blogging about our mashup family since we began it but the effort has been casual and blog writing hasn't been a priority.

Today we refocus with a commitment to capture our experiences in real time and celebrate them, talk about them, not take the moments - gorgeous and ugly alike - for granted.

Swan Positive will give us the opportunity to communicate with our family and friends to keep our amazing village informed of our progress and keep us HONEST to our commitment to the positive.

A project management truth is that what gets measured, gets done. It's time to put our money where our mouths and minds have been.

Welcome to Swan Positive and Happy Thanksgiving!

I am so thankful today that Brian and I found each other and that we live this life as a team.

-Jacque