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!!