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!!