Tumor markers falling

Dear family and friends, hope you all had a wonderful Thanksgiving.  We are celebrating with great news as my latest tumor markers are down 50 points versus a month ago.  Looks like Halaven is working!

Clear brain scan, new chemo underway

Good news, my brain scan yesterday was clear.

I started my new chemo, Halaven, today and so far, so good.  Fingers crossed it will be effective.  Halaven is a fairly new drug (FDA approved 3 years ago), so there isn't a ton of data on it.  We're a little jaded because Afinitor, the last drug I was on, was touted as a big breakthrough in metastatic breast cancer, but didn't do much to slow my cancer.  Halaven doesn't have quite the hype that Afinitor has, but hopefully will work.  It seems like I tend to get more mileage out of the chemotherapies versus the hormone therapies, so hopefully that will be the case.

Scan results - time to switch treatments again

Dear family and friends, Nancy here again.  I always feel a little funny writing posts on a blog about myself, but here goes...

My latest scan results are in and the cancer in my liver and bones is worse, so I'll be starting a new chemo this week.  The new chemo is called Halaven (aka eribulin) and word on the internet is it is not too awful in terms of side effects.  I have a brain scan this week to make sure the cyberknife was successful.  My memory is terrible, worse than usual, which is saying something for those that know me (!) and I'm having some pressure in my head, but no headaches, thank goodness.

THANK YOU for keeping up with all the ups and downs, everyone.   I'll post more when I get the results later this week.

The latest

Dear family and friends, Nancy here again, thanks for continuing to check in.  As Jake posted on the last update, I finished cyberknife and am glad to have it in the rearview mirror.  I'll have a follow up brain scan in about 5 weeks to make sure all is well.  I also meet with Dr. Rinn this Friday to talk about my systemic therapy of Aromasin/Afinitor.  I'm sorta' anxious to have a scan to know if it is working, but will defer to her expert judgement.  I feel okay, mostly just tired.  I've had a little trouble with mouth sores, but they are getting better.  I've had a few mild headaches too, but nothing like the terrible headaches of the past few months.

We had a nice visit with my Aunt Nancy and Uncle Rich this past weekend (I completely forgot to take pictures), but it was great to see them.  My mom, who also has stage 4 breast cancer, goes for surgery on her ankle next week, so I'll be taking care of her for a change.  Fingers and toes crossed the surgery will go smoothly and she'll literally be back on her feet soon.

CONGRATULATIONS GRADUATE!

Last week was a big week.

Nancy received 5 straight days of radiosurgery (cyberknife) treatment on the area of her brain where she had surgery this summer. As her radiation oncologist explained to us, the reason for the 5 separate procedures of lower radiation instead of a single treatment is like going to Hawaii. When you visit Maui from Seattle in January, you need to adjust to the sun. Spending 8 hours in the sun on your first day will result in a sunburn (this is a concept I have yet to remember when visiting Hawaii in January). However, if you spend an hour in the sun each day, there's a healing cycle in between each exposure. And no burn!

The area being treated was pretty close to the optic nerve, and if treated in a single dose of radiation there's a 10% chance that the optic nerve would be damaged. But with the 5 smaller doses and an opportunity to heal in between, the risk is reduced to less than 1% chance. So a week's worth it was. 

The treatments were fairly quick (20 minutes). She had her choice of musical genres and some quality time in the treatment room alone with the robotic arm and a mask bolting her to the table. Nancy found these treatments among the more anxiety-producing events of her battle to date. At certain points during each treatment, she experienced very unpleasant tastes and odors. And I suppose any experience where everyone else leaves you alone in a room behind a 14-inch metal door can be unnerving.

On the positive side, dear friends Luanne and Jenny each took a shift being with her during treatment and driving her. So it wasn't all bad.

 After the final treatment on Friday, Nancy was presented her diploma!

  by Jake

Cyberknife - day 2 of 5 complete

Hello again friends and family, thanks for continuing to check in on my never ending medical updates.  Today was day 2 of 5 days of cyberknife radiosurgery to mop up any microscopic cancer cells that might be left behind after my surgery in July.  It went well (big thanks to Luanne for being with me today and driving me home, prospective thanks to Jenny who will be with me tomorrow).

Cyberknife is a walk in the park compared to some of the medical torture I go through, but to be honest, it freaks me out.  I try to be brave, but once they snap the mask onto the table and close the enormous lead door, I get a mild panic attack and have to psych myself to be calm until it is over.  Today, mid way through the treatment, the computer stopped working and they had to reboot it or something.  The cyberknife robot arm was pointed straight at my right eye when the breakdown occurred, so I had to lie there while the robot eye opened and closed multiple times.  All I could think about was the possibility that they were accidentally nuking my head while the computer came back on line.  The staff were as nice as could be, giving me updates through the intercom, but still it was me versus the high beam radiation robot stare-down (wish I had better writing skills because I'm certain there is a funny story here).  Anyway, I survived and am doing perfectly fine tonight.  Two down, three to go.  Ready for a victory lap this Friday when I'm finished.

Here's a pic of the door (see how thick it is?!).

Cyberknife scheduled

Hi again, Nancy here with another update.  My cyberknife radiation treatment is all set for next week.  This time it will be Mon - Fri, about an hour each day.   In non-brain-related news, I saw Dr. Rinn and we talked about my rising tumor markers.  She wants to stay the course with Afinitor/Aromasin for now because she doesn't think I've been on it long enough to know if it is effective.  We'll check my labs again in a month and see how things look.  If they are still rising rapidly, we'll do a scan and potentially change to a different chemo.  So far, the A/A combo has been a very easy treatment and it is nice to have be taking oral meds rather than going into the infusion center every week.

I'm still very tired, probably from surgery, maybe also from treatment, but am taking it easy and trying to get lots of rest.  Thanks again for all the support and well wishes.  Jake and I had a lovely anniversary dinner last night, then played cards on the patio while we watched the sunset over the water and mountains...made me think that in spite of having an awful disease, we sure do have a wonderful life!!

Labor Day weekend

Hello again family and friends, thanks for continuing to check in and keep us in your thoughts and prayers.  We've had mostly smooth sailing the past couple weeks including a great visit with friends last weekend and a fun weekend in San Francisco over Labor Day.

While it has been mostly smooth, I had another awful headache last week following issues with my right ear and had to go into the hospital for iv fluids, pain meds and anti-nausea drugs.  My medical team wasn't happy with this turn of events, so ordered scans of my head/neck and a lumbar puncture to make sure the cancer hasn't spread to my spinal fluid.  Huge thanks to Jenny and Wendy for transportation and company on short notice during my spinal tap.  The scans and lumbar puncture results were all good, which is great, though we don't have an explanation for why I'm still having headaches.  I had another headache today, but I am starting to figure out the right combo of meds to take, so felt much better after 6 hours and my nausea was kept in check (big improvement over the last headache that lasted something like 28 hours)

We are still waiting for insurance to approve the cyberknife treatment, but expect that will come through any day now and we'll get the procedure scheduled.  My tumor markers have been climbing, but Dr. Rinn thinks we should stick with Afinitor/Aromasin for now.  I meet with her on Friday to talk about next steps.

Thanks again for all the cards and well wishes.  Sorry I'm not good about calling and am way behind on sending thank you notes.  Please know we appreciate it more than we can possibly express.

More updates

Hello again family and friends,
In spite of the bumps, we are still hanging in there.  Jake's back is a tiny bit better, though still really painful.  We are doing our best to take care of each other.

I had an informative appointment with the radiation oncologist yesterday to talk about post-surgery radiation options.  We talked about doing either cyberknife (targeted radiation) versus doing whole brain radiation and decided cyberknife makes the most sense.  I'll start it in about 10 days or so, after they get it cleared with insurance.  The treatment will run for 5 days straight, versus the single high dose treatment I had earlier this year, but otherwise will be similar, which is to say hopefully very easy, mostly I'll just be tired.  I hadn't contemplated whole brain radiation, but based on what he explained yesterday, it seems at some point we may cross that bridge and there's even an argument for doing it now to reduce the risk of other lesions popping up (my risk for this is quite a bit higher than I thought, something like 70%).

The scar from surgery is healing well and I haven't had any trouble with additional headaches.  My final dose of those awful steroids is today (thank God), so I'm hoping to feel back to my old self soon.  It has been smooth sailing on the combo of aromasin/affinitor, so hopefully I'll get a nice long run on it before needing further chemo.  Now that my black eye is healing up, I'll have to get some updated photos.

Couple bumps in the road, but we're still going strong

No sooner had I posted how well things were going that I got my first terrible post-op headache in the middle of the night on Wed.  It came on suddenly and was quite severe, so I tried to wake Jake up to see whether we should call the doctor or tough it out, but it was nearly impossible to wake him up (he had a procedure earlier in the day for his back and was literally down for the count, not allowed to drive for 24 hours, so it was crazy for me to attempt it). Since I couldn't wake him, I took my pain meds, wrapped the heating pad around my head, and went back to sleep.  The next morning, I was still hurting and, because I'd taken pain meds on an empty stomach at 2am, had terrible nausea and couldn't keep anything down, not even a small sip of water.  After talking with the neurosurgeon's office around 8am, we were told to go to the ER to make sure I didn't have bleeding in the brain or some other horrid problem.  Quick CT showed a little swelling, nothing too impressive, but enough to give me a big dose of steroids, pain pills and anti-nausea drugs.  I'll follow up tomorrow morning with another CT and visit with the surgeon, but am doing much better now.

On a happier note, I went into the office on Friday for a social visit with my wonderful coworkers/friends.  Everyone kept commenting on how much color I had in my face and neck...wondering if I'd actually been on vacation in Hawaii versus out for brain surgery.  Turns out, it was those darn steroids!  I had a visit with Dr. Rinn right after and she noticed it right away, along with my puffy round face, which she assured me would go back to normal soon.  Amazing Dr. Rinn apologized for all the drama I've been through lately, but was incredibly reassuring (as she always is) that we will continue with the current plan of Aromasin and Affinitor.  She made me promise never to take percocet on an empty stomach again, even taking a couple crackers at 2am along with an anti-nausea med will be enough to ward off future trips to the ER.

As some of you know, Jake has been struggling with terrible back pain for four years now and while we are hopeful this latest procedure to cauterize the nerves in his back will help, he tweaked his back today and is in so much pain he literally can't move.  Since I'm on strict orders not to lift more than 10 pounds, you can imagine the comedy of me trying to "help" him get around.  We might as well be a couple old folks ready for the nursing home, but he toughed it out and is hopefully on the mend.

Thanks again for all the support and help...we really are doing well in spite of the ups and downs.  Here are a few of my favorite new photos, the bulldogs on top of Jonathan Adler ottomans (birthday present from my marathon of birthday celebrations), a photo of us pre-op on vacation in Santa Monica with my snazzy new wigh and enjoying birthday cake with friends.  Love to all, thanks again for supporting us!!

Post cranio update

Nancy here again, happy to report I'm still doing well, continuing to get stronger each day.  We met with neurosurgeon, Dr. Srinivasan, on Friday and she reiterated what Jake posted earlier, that the post-surgical MRI showed the tumor was gone and all looks well.  She also told us the surgery was anything but routine due to the location of the tumor and the amount of blood vessels.  

Again, I can't say enough about how loved and supported Jake and I feel.  The meal delivery service is amazing.  Also, since the surgery happened to fall on my birthday, I've had a marathon of birthday celebrations.

Thank you, everyone!  Here's the caregiver-in-chief!!

Surgery one week out

Hey everyone, Nancy here, feeling well enough to post a quick update to the blog.  THANK YOU to all of you, our dear family and friends for helping us through.  We honestly can't begin to express how grateful we are for the food, flowers, cards, gifts, visits, calls, emails, prayers and well wishes.  We feel completely supported and love you all so much.

I'm up and about, feeling well, and have very little pain.  The bruising is fading along with much of the swelling, the human body has an unbelievable ability to heal.  I'll post more soon, just wanted to let you know all is well.  Love to all.

Letter from Jake: Day 3

Nancy's progress has continued. It seems that every time I go into her room, she is either gone (she was transferred to an intermediate care unit yesterday afternoon) or there are less tubes and wires attached to her. She has been awake and talking all day. I think she wanted to sleep, but I wanted to talk. She had her MRI this afternoon (good results). Her doctor just visited with some great news, she'll be discharged tomorrow morning! Nancy is ready to rest and recover in the comfort of her bed with her bulldogs and some home cooking (pita pizzas, peanut butter & jelly sandwiches). Oh, and Operation Lemon Cake was a huge success! It made her birthday celebration complete. Thanks again to everyone for your thoughts, prayers, and kind notes. Your support was pretty incredible and she was deeply touched. Have a great weekend! Jake

Post surgery Day 1

Jake reports that Nancy is doing great today. Her pain is subsiding a bit, and she is recovering well from the procedure. Tomorrow her surgeon will use the cyber knife as a follow-up to the surgery, and she'll have an MRI. Rumors abound that Jake is covertly trying to smuggle in a lemon cupcake... things are looking good!Thanks for continued support, love and prayers!

July 24th

celebrating Nancy

Many of us woke up this morning with a heavy heart, feeling a little anxious, and scared. I know I did, and my phone's been going crazy as friends and family fire off thoughts and prayers, and little notes of encouragement to pass along to Jake and Nancy.

I know a lot of you are coming to this Blog for updates and information. I'm going to try to keep as current as possible with information.

Here's what I know now: Sweet friends of Jake and Nancy arranged a downtown flat for them to stay last night because Nancy was at Swedish yesterday afternoon for a baseline MRI and attachment of reference points to her head. They'll be used to guide the probe to the tumor today. The surgery will happen sometime this afternoon.

Today is Nancy's birthday. Don't worry!! She got her cake and was totally celebrated and loved on.

Monday night was a surprise meal at Canlis, and the weekend was an outpouring from friends. We are all by your side, Nancy and Jake...

The next mountain to climb

Nearly three years ago, Nancy loaded her pack and set out with Team Survivor to conquer Mount Adams. She endured harsh conditions, pushed herself mentally, physically and emotionally to the summit. She did it, and we all followed, encouraged, and celebrated with her, as she overcame this huge and really, really hard challenge.

As most of you know if you've been following this Blog, the past few weeks have been eventful, and Nancy's headaches have been quite bad. A brain scan last week indicated that a lesion has grown to the point that it needs to be removed. So a week from today, on Nancy's birthday, July 24th, she will undergo brain surgery to remove this tumor and then remain in the ICU for 3-4 days following the surgery.

 It's difficult to know how to support and love Jake and Nancy in the scary days and weeks ahead. We will be setting up a meal calendar upon her return from the hospital. If you would like to provide your support in this way, please email me at jacksonfamilytn@comcast.net so you can be included in the meal-scheduling email. In all likelihood, we will be working through a caterer to minimize traffic in their house while Nancy recovers.

 Thank you for your continued support for Jake and Nancy. This is one of those hard times in Nancy's cancer fight, so right now is when our thoughts and prayers mean a lot-- right now 'by Nancy's side'.

Eventful few weeks

Dear family and friends, thanks as always for checking in and keeping track of all the ups and downs of our crazy journey.  As Kate posted on the last entry, I switched treatments and started a new chemo called Gemzar.  By all accounts, it should have been as mild and easy to tolerate as Navelbine, but it seems that I am allergic to it.  I've basically felt like a truck rolled over me for the past few weeks, lots of aches/pains, terrible headaches, and skin reaction....and now my hair is falling out in handfuls, which isn't supposed to happen.

We had a good meeting with Dr. Rinn yesterday and decided to go in a different direction.  We are going to try an endocrine (hormone) therapy called aromasin, plus a targeted therapy called affinitor (aka everolimus).  Affinitor is the drug I tried to get about 18 months ago, before it was officially blessed by the FDA, but had so many challenges with insurance we gave up.  Affinitor is now FDA approved, so we shouldn't have any problems.

My headaches are a mystery.  We are trying some different things to see if we can get them under control.  Dr. Rinn prescribed massage therapy, you gotta' love a doctor who orders you go to the spa! We're also trying a round of steroids.  My next brain scan is about a month out, so we'll see if that gives any helpful information.

In non-cancer news, we had a fabulous trip to Nashville to visit with family.  In spite of feeling a little under the weather, it was great spending time with family.  Our sweet little niece, Ainslie June, celebrated her first birthday with strawberry cake, made from scratch by Aunt Katie.  Niece Sadie, planned a birthday celebration with a hoedown theme...how adorable?!?  All the kids, plus Uncle Jake and Uncle Jimbo, played in the pool for hours on end in the wonderful warm sunshine.  It was wonderful to spend time with Kate/Grant and Jimbo/Molly for the weekend along with the kids.  Wish we had more time with them as we all live so far apart, but it sure makes us appreciate the time we do have.

Nephew Jack and Niece Sadie

Nephew Graham, Jake, and Nephew Duncan

Sis-in-law Molly, Nephew Jack and Niece Ainslie

Nancy, Ainslie, Graham, Sadie, Jack, Jake, and Duncan

new arsenal

Just a quick update to let you know that there has been a little uptick in Nancy's liver mets. Basically that means that her oncologist is switching her chemo meds as of this afternoon. Nancy and Jake are not discouraged, but as always, they are lifted by your thoughts and prayers. Specifically, that this new drug, Gezmar, will be effective. 

One of the hardest aspects about this fight is that period of not knowing-- waiting for results. But one of the many inspiring qualities about Jake and Nancy is their steadfast patience and perspective. This weekend, during one of those "wait for results" times, they got to do something really fun. They spent Saturday night ON Safeco field dining with Russell Wilson and other new Seahawk friends! 

I'm sure those players enjoyed their company.

(photo courtesy of the "super nice" kicker!!!) 

Sharing my story... (by Kate)

A week ago today, Nancy woke up at 2:45am to catch the first flight out of Boston Logan Airport, where she had come to Boston to cheer me on as I fulfilled my dream. As you can imagine, there wasn't much sleep before that alarm sounded. Neither of us ever imagined we would leave Boston with such heavy hearts.

A New York journalist picked up our story and shared it. We are both thankful to Wayne Coffey for putting words to this story.

Toast at the Ritz Saturday night.

Day before race at the start, right in front of where the first bomb went off.

Pre-race dinner in Little Italy (North End).

Happy Easter!

Hello friends and family,
Kate made me a contributor to the blog, so now I can post my own updates (thanks, Kate!).  I had cyberknife for my second brain tumor 5 weeks ago and it went smooth as glass with virtually zero side effects.  Modern medicine is truly remarkable.  I'll have a brain scan in another couple months to make sure it worked, but everyone is highly confident.

On the chemo front, Navelbine continues to be a winner.  The cancer in my liver, lungs, and bone are all stable or slightly improving.  The plan is to stay on it as long as it works.  A million thanks to Wendy, who faithfully joins me every week for 3 hours at the treatment center.  In other news, I decided to take a little break from work and will be taking the entire month of April off.  Ten months of weekly chemo have been exhausting, so it will be good to rest up and relax a bit.

I didn't mention this before, but my friend, Heather, who I met through the Under Armour Power in Pink, passed away on Feb 1st.  She was truly an inspiration and defined what it means to be a fighter.  She died in her husband's arms, exactly where she wanted to be.  Heather was diagnosed in her 20's and lived for 23 years with breast cancer, over 10 years with metastatic/stage 4 disease.  I miss her so much and can't tell you how much I'm inspired by her courage.  I carried a flag in honor of Heather when I climbed Mt. Adams in 2010, so I know my climbing friends feel like they know her.  Rest in peace, Heather.  Prayers and blessings to your family, especially your husband, Chad.

Thanks again to everyone for checking in on me and for your continued prayers and well wishes.

Winter Update

Dear family and friends,

I've finished another round of scans and, in general, things are looking pretty good.  Navelbine continues to make progress on my liver, lungs and bones, so we are going to stick with it.  I booked my appointments out through June, which will be a year since starting this weekly chemo.  Hard to believe I've been on chemo this long and still feel great and continue to work full time.  

My brain scan showed an increase of the lesion we've been keeping an eye on, so the plan is to treat it with cyberknife.  The procedure hasn't been scheduled yet, but will likely be in the next couple weeks.

Aside from that, things are going really well.  We had a fabulous trip to Hawaii with our friends, Nate and Luanne.  We rented an amazing house, overlooking the ocean.  Nothing like warm, sunny weather to lift your spirits in the middle of winter.  We are very grateful for my mom, who took care of the dogs while we gone.

My friend, Wendy, continues to join me each week for chemo and I'm so thankful to have her company.  

Thanks for continued well wishes and support!