Hair

It's two weeks since the surgery's past,
My! Jills hair grows so fast!
My follicles don't have such speed and vigor,
Of the two, hers is longer.
I don't worry, I don't cry,
Chemo therapy is my ally.

No More Staples!!!!

It was 113 degrees in phoenix, and 33 degrees inside the Mayo Clinic. I now know why they charge a premium. It does make me wonder how much their electric bill is every month, with all of the special hospital equipment not to mention the AC. How much electricity does an MRI machine use? What about at CT? Not to mention the radiation machine which I learned is a proton accelerator. It must be enormous.
Anyways, the staples were successfully removed, another MRI was done, and we met with the Radiation Oncologist (Dr. Vora) and talked about the treatment. They made a mask of Jills head and neck that she will wear during the radiation treatment to ensure that her head is always in the exact same location ever single time. After the treatment it will make a great Halloween costume, or have it bronzed and placed on a grand panio, or paint it wild colors and become a Luchador, how about a hockey goalie, the possibilities are ENDLESS!
The Radiation Oncologist was very optomistic that Jill's youth, strength, and health will be very benificial in tolerating and recovering from the radiation. It was very encouraging to hear that. Learning about the radiation is facinating, the technology they have is simply amazing to be able to pinpoint it.
We met again with Dr. Zimmerman, who was sporting a tie with a bunch of cyclists. When I commented on his tie, he pointed and said "this one is Lance, and this one is Contador..." If he has said Cavendish and Hushov I would have been really impressed. He was happy to hear how well Jill was healing and again gave us words of encouragement about the chemo/radiation.
I also learned a new phrase "Usual, Customary, and Reasonable"

Address

We're now home and our address is:
2712 East Miller Drive
Flagstaff, AZ 86004

Gaining Strength

It's been really nice to be back in Flagstaff, as the monsoons have brought us cool rain and beautiful sunsets. Of course all of that rain leads to more weeds in the back yard, but it's a price well worth paying.
Jill is getting her strength back, both physically and mentally. Every evening we go for a nice power hike in the woods and she keeps getting faster and faster. She's also preparing mentally for the battle that lies ahead and knows that she is tough as nails and will beat this thing. I'm amazed as to how mentally and physically strong she is. It's going to be a fight, but she knows she is going to win, and so do I.
A co-worker loaned me Lance Armstrong's first book about his battle with cancer and of course I left it at the office on Friday leading to a nice bike ride this morning while Jill was sleeping in to get the book. He does an inspirational job of describing his attitude towards cancer and how it changed his life in a positive manner.
It really felt good for me to ride my bike again. I've really missed that and it took the stress down a few notches. Speaking of bikes, my greatest distraction through all of this; the Tour de France (say it like Bob Roll "Tour DEE France") is ending tomorrow. Whenever I got overwhelmed by all of this, I would read up on what was happening in the Tour. Contador will win and did it in the style of Lance Armstrong. Dominate the mountains, and crush the time trial. That's our plan for the tumor; dominate the surgery and crush the chemo! (everyone flex like a WWF wrestler and say "Arrggghhhhh!!!!!") (that just doesn't work with a cyclists atrophic upper body)

The Plan

Just a quick note before we try to get some sleep.

July 28 the staples are removed, get an MRI and meet with the radiooncologist
August 3 meet with the neurooncologist to discuss the final treatment plan
August 10 radiation and chemo therapy begins for 6 weeks.

It's a long road that lies ahead, but there is sunshine at the end.

Midnight Questions

Tomorrow (technically today) I am heading back to work. Jill's mother is here and will be able to care for any needs that Jill has, meaning that Jill finally has a good excuse to boss her mom around! The Family Medical Leave Act allows me up to 12 weeks of unpaid time off, and I'm quickly running out of paid vacation days, so to keep my paychecks coming I'll be finishing off this week and working next week (except for next Tuesday when we get the staples removed, another MRI, and talk with the radiooncologist). I'm going to confirm with the neurooncologist tomorrow that chemo therapy and radiation will be starting Monday August 3. While in Phoneix for the 6 weeks of treatment, I'll have the opportunity to work at the phoenix branch so as not to run into that unpaid time off.
I'm having trouble sleeping because there are a million questions racing through my head:
How will Jill react to chemo therapy?
How will the tumor react to chemo therapy and radiation?
Will I be able to pull off taking Jill to treatment and then working?
Will Jill be ok with that?
How many more vacation days do I have left?
What other treatment will she need after this initial 6 week chemo/radiation blast?
What will we do with Leo?
Will he remember us when we get back?
What sort of hairstyle is Jill going to want when her hair grows back?
Should I go get a midnight snack?
How many miles are we going to be putting on the car?
Good think we have a hybrid.
How much of the bill will Blue Cross Blue Shield cover?
Will I ever get my dream mountain bike?
Does that even matter now?
It's 1:00AM, whos dog is barking?
What does an insurance company consider a pre-existing condition?
What kind of car does a neurosurgon like Dr. Zimmerman drive?
How much different is brain surgery compared to endovascular aortic aneurysm surgery?
I wonder what Jill is dreaming about?
How is her brain going to react to having more room now that the majority of the tumor is gone?
How long has the tumor been growing?
I wonder what Leo is dreaming about?
How much sleep have I lost?
What does the radiation machine look like?
Are we going to get this much rain next spring and summer?
Why didn't I make any cookies this weekend?

I could go on and on and on, but I should try to fall asleep again.

Your Support

Jill and I just finished reading the entire blog and all of the comments and are both feeling really loved. I'd cry if I could but I've run out of tears from this last week.

Our dear friend Alissa sent me this email to help coordinate support:

"Hello friends and family of Rob and Jill.

So many of you have offered to help and I am setting up a list so we can have all of this information in one place, easy to access. Please email your name, phone number and what ways you'd be able to help (meals, errands, housework, transportation, companionship, dog care...), plus anything else I should know (like if it's much better to reach you by phone, etc.) Oh- if you're down in Phoenix rather than Flagstaff, please let me know that as well. With all this data in a spreadsheet we should be able to help out whenever Rob and Jill need us!

My email: thelissybug@gmail.com

I will send out an email or call when we find a need.

Thank you!

Alissa Marquess"

Feeling the Love

Jill was discharged from the hospital a mere 3 days after her SECOND brain surgery. How amazing is that?!!! The support we've received from everyone has been incredible. Friends, family, friends of family. The message is the same "anything you need, we're here for you" It really makes a hard time that much easier. We now have two weeks to recover from the surgeries (it still blows me away that it's plural), then it's chemo and radiation time for the next 6 weeks. We cannot begin to thank you all for the support. Stay tuned because the story isn't over quite yet.

And Then Our Life Changed

We spoke the the neurooncologist and found out the next step. The preliminary pathology results showed that the tumor was aggressive enough to start radiation and chemo therapy. The final pathology results will most likely dictate a more detailed plan, but right now it looks like she will be starting radiation and chemo therapy in about 2 weeks +/- to give her some time to heal from the past two surgeries. The chemo therapy will be called Temodar (I've done minimal research but if all you webbies want to help me out, that would be great). It sounds like she'll be receiving this treatment for 6 weeks, a month off, then another treatment.

This is all so very overwhelming and pretty hard to digest, but we've got several advantages working for us:
Jill is young; going through this at 32 is better than at 62
Jill is recovering from the surgery at a remarkable rate. The stronger she is going into radiation and chemo the better the outcome.
Jill is healthy; organic eating tree huggin non smoking hippy chick

How is this going to change our lives? Long term, hopefully not much. She's going to beat this thing and come out of it stronger than ever. In a year or two from now its going to be an MRI every 6 months or so to make sure that this bastard isn't coming back.
Short term is a more intersting question. We will be making many more trips to Phoenix for treatment and follow up. Jill won't be finishing the Flagstaff Summer Running Series and I won't be competing in the Leadville 100 mountain bike and 100 run (they better give me a refund; Lance Armstrong will be there racing and he would understand)
Jill said that if she gets through this she wants to go to Italy, haven't figured out how/when we'll get there, but it will happen.
Thats all the easy stuff. When thinking about work, it gets slightly more complicated. I need to find out tomorrow how much time off work I'll be able to take and when I can take it. What will happen to my coworkers w/o me? (boy that makes me sound way more important than I really am!) Jill's massage business is more more physical and who knows when she will have the strength to start back up. What will all her clients do while she is gone? During this time can we make it on my salary alone? Will I get my full salary during while I'm gone or will it be a smaller percentage? If we're down in Phoenix for the treatment what about our baby boy Leo (he's such a good dog)?
Ok I'm now too tired to be thinking about this.
If you've read this far, you probably forgot about the picture of the cow by now (rhyme not intended, but I'll still take credit for it). Why the cow? Because the cow is happy. Look at the beautiful green field it's in! Also I'm too tired to go looking for other pictures, found this one from our trip to Switzerland and it made me want to smile.

The Waiting Continues

Jill is doing amazingly well today. She was up and waking around which has the doctors amazed! Truly a testament to Jill's youth, health, and fitness. She is really anxious to leave the hospital and head home. Still no word on the discharge. We're still waiting on the neurooncologist to come and give us some feedback on further treatment. One of the doctors hinted at radiation and chemotherapy but defered to the neurooncologist, who we will see this afternoon.
The PT just waked in to screen her and she is doing fine and does not need any PT service!!!
Now it's waiting to talk to the neurooncologist and the speech therapist.

Beautiful

The true test of beauty is to shave her head, put 34 staples along the side, and dress her up in a hospital gown.

Jill is and will always be beautiful.

R&R

Day 1 after the second surgery. Jill is still in a lot of pain which is being closely watched and managed by the wonderful staff here at the Mayo Clinic Hospital. She's really tired and trying to sleep which allows me some time to catch up on some of my sleep too. It's still unknown how long we're going to be here. All depends on the recovery. Could be out as early as the weekend, but it could be longer. We'll have to wait and see. I've gotten some requests for an address so here it is. She's changed rooms quite a bit, but the staff here is good about finding her.
Mayo Clinic Hospital
5777 East Mayo Boulevard
Phoenix, AZ 85054

Round 2

Jill has come out of the surgery like we all knew she would. Pissed off like an angry hornet! She is in the kind of pain that only those who experience back to back brain surgeries can understand. I'm going out on a limb with this statement, but I think that childbirth is nothing compared to this (that should spark some comments). She is never wanting to go through with that ever again. Nobody wants to go through with that once, let alone twice. She didn't experience any signs of expressive aphasia when it comes to her thoughts on brain surgery.

Dr. Zimmerman was able to remove about 80% of the tumor and excersized consersivative restraint in order to preserve her quality of life (speech, motor skills, etc.) Portions of the tumor removed appeared to be more aggressive than those that were removed during Round 1 and have been sent to Mayo Clinic Rochester for further pathology analysis.

Jill will begin speech therapy tomorrow and will have the 30+ staples removed in 10 days. The length of her stay in the hospital is unknown and further treatment will be determined after the pathology results.

I'm exhausted, but not nearly as much as Jill is. She is a trooper!

The Waiting Game

Jill went into the OR at 1:15 arizona time and it is now 6:38 and she's still in there. It's strange knowing that she is having some strange tumor material being removed from her brain. The tumor is about the size of a large avacado and the last surgery took almost 6 hours and he only took out about 20-30%. What a painstakingly slow process. A little piece at a time, given to the pathologists, then take out a little more. I'm sitting with my parents in the waiting room and every time the door opens the pit in the bottom of my stomach digs a little deeper. Think positive...Think positive...Think positive

Pre-Op Speech Test

I was going to post this before she went into surgery but stupid Paradise Bakery's internet connection wouldn't let me (their espresso sucks too)

The speech tereapist is now giving her a pre-op speech test to estabilish a baseline and will take about 1 hour. I was ordered to go relax and get some coffee. I'm now drinking a crappy shot of espresso from Paradise Bakery and Cafe; I think I would've been better off with the hospital coffee. Jill's speech in normal conversation is pretty good, however she struggles with finding the right words when asked directly. Point to a chair and she knows what it is, but can't find the right name. This occurs with just about anything. I asked her what was in the fruit salad she had for lunch and her answer was "lots of fruit". But then I asked her if she liked the blackberries and she said they were too tart (I tasted one and she was right). She's accepted the fact that she will need speech therapy after all of this and i'm hoping that it's the only therapy she'll need. Ughhh, this coffee is bad.

Go Time

It's Go Time! Jill is in there punching that tumor. TUMOR YOU ARE NOT WELCOME HERE!!!! This is going to be the biggest race of her (and my) life. We've got the best doctor in the world and we're in the best place in the world for this. She was in good spirits going into this and I know she's going to come out of this better than ever.

The Night Before The 2nd Surgery

Jill and I are both very scared about the surgery. Dr. Zimmerman will be trying to remove as much of the tumor as possible and I hope that the MRI taken today will help him distinguish what is tumor and what is brain. She's a Super Strong Cosmic Girl and will come out of this better than ever!

MRI

Jill is currently having an MRI. The bandages were removed exposing her shaved head with 34 staples along the incision. They were putting 10 markers for the MRI. She was in really good spirits about everything and smiled for a few pictures.

Nap Time

Jill fell asleep while watching Finding Nemo (whenever we watch a horror movie, we always rent Finding Nemo afterwards)

The Mayo Clinic

The Mayo Clinic has lived up to it's expectations. Everyone here, from the nurses to the doctors to the janitors have been so kind, helpful and bending over backwards for both Jill and me. The neurosurgon spent as much time as we needed explaining everything and answering all our questions. Every room here is a large single room which has been really nice. The TV has movies on demand, there is a bathroom with shower and even a mini-fridge. Jill was talking in Spanish to the cleaning lady who was emptying the trash and she asked if I spoke Spanish too "frijoles pantelones" was my response and we all had a good laugh! I even got a pair of the 'sticky pad" socks that all the patients have to wear when they''re walking around. Bright red with grippy pads. Super stylish!

Tuesday Surgery

Today Jill is doing really well. Her spirits have been lifted and she's in a much better mood. The second surgery is scheduled for Noon on Tuesday (tomorrow). Dr. Zimmerman will have access to a full pathology team (rather than the weekend shift) and also image guidance so he will be more confident in what he is taking out.
This is the BIG ONE folks, so keep those positive thoughts coming.

Thanks

Jill and I want to say thank you to everyone out there sending us good thoughts, helping us out, and being there for us. This is a difficult time and you're strength is helping so much.

Thank you.

Distractions

The Tour dee France (as Bob Roll would pronounce it) has been a really nice distraction for me.

Tumors

Tumors just aren't fair. Its interesting how they don't discrimiate against age, gender, race, lifestyle, etc. You can increase your odds to 99% and decrease them down to 1%, but you'll never hit that 100% or 0%. Some people are just going to get them and other aren't, no matter what.
Get me a pack of cigarettes and some genetically modified, non organic, pesticide covered fruit.

10:15 PM Sunday

This blog will be me tracking how Jill is doing during her treatment and recovery. It's going to have my thoughts, Jill's thoughts, and hopefully everyone will post their thoughts. Some might be long boring posts of me rambling on, others might be brief posts about what she's having for dinner or how many laps she's doing around the nurses station.
Jill is falling asleep. She had a rough couple of hours as what has happened is starting to sink in. "It's not fair" "Why is this happening" "Am I going to die" The usual in-between brain surgery questions. This is one of the hardest parts. I'm trying to support her the best I can but it's hard when I'm asking the same questions.
She's awake now and playing with the bed. There a billion buttons that make the bed rise and fall spin around and do flips. The nurse is back giving more IV's. Her attitude has been up and down based on the medication, her pain, and how much she is thinking about what is going on. Tomorrow will be more of the same.
I'm going to do a few more posts, then head off to get some much needed sleep.
Rob

8:30 Sunday

I'm sitting next to Jill while the nurse is giving her some insulin to bring her blood sugar down which has been elevated due to the Decadron (a cortasone drug) She is really wishing we brought down her anatomy books so she can brush up on that. If anyone knows of any good websites please let me know. Spirits are ok. More later
Rob

Jill had a large tumor, approximately 8cm oblong, in or near the speech center and extending large distances. Due to its size, it was not possible to tell what kind of tumor it was or where it started. As surgery progressed it became less possible to distinguish tumor tissue from brain tissue. Since the tumor’s size potentially affected critical speech, motion, and sensory (e.g. numbness) structures, the surgeon exercised a cautious conservative approach to tissue removal and stopped the surgery rather than risk critical brain structures.
Based on preliminary analysis, the surgeon believes that the tumor is low grade; that is, slow growing. However, he also feels it is too early to absolutely commit to this judgment because they do not have adequate tissue samples from all parts of the tumor.
A second surgery is planned for Tuesday afternoon with a full pathology team and an image guidance system, neither of which was available on Saturday. Another MRI is planned for Tuesday morning to support the image guidance system. (Earlier references to brain mapping were incorrect; no brain mapping is planned.) This will enable the surgeon to take as much tumor as possible, confidently. Following that, determination can be made regarding further therapy.