We’ve been home for two weeks now. Between doctor appointments, we’ve resumed somewhat of a routine with my work and childcare, while Luke “rests”. Rest for Luke includes 7:00 am Monday morning meetings at Lucey Electric to check in with the boys and catch up on work details, tying flies, fishing, harvesting garlic, taking down fence and other accomplishable home chores he comes up with that are always more complicated than, say, doing the dishes.

While we spent our first weekend home in requested solitude, we accepted & received visitors last weekend. It was good to see family and friends, but big days are want to take their toll and a few good days can mean a day of recovery – especially since coming off of all pain medication and steroids to help reduce swelling. We did however take advantage of all the extra hands and take a small float on the Teton River. Luke enjoyed his mandatory status as fisherman since docs orders prevented him from lifting anything heavy or, we assume, rowing.

Last week we had a nice reunion with the local doctor who originally caught this issue and helped us tremendously in navigating through the first steps. In celebration, and because it was time, she removed the staples from Luke’s “zipper”. He felt considerably better about 5 minutes after they were out. There’s still a little residual swelling around the top of his jaw that’s causing some discomfort, but that should continue to dissipate over time. He is doing quite well considering he underwent brain surgery just a few weeks ago.

We met with the radiology oncologist in Idaho Falls. He was a good guy, but he felt compelled to reiterate Luke’s diagnosis and the stats to be sure we knew what we are dealing with (and he clued us into the common abbreviation – “GBM” for glioblastma multiforme). It’s practically impossible for me to hear these things out loud and not tear up, not fear the worst and not feel like we’ve been dealt one hell of a blow. It’s hard to stay strong and “know” that he’ll be one of the statistic breakers, even though we feel that way – It’s obviously not a given. The radiation oncologist re-prescribed a small dose of steroids to help keep swelling down during the radiation treatment; they’ve definitely seemed to help him feel better when he’s been on them previously during this recovery, so that could prove helpful over the coming busy weeks.

The radiology crew is all very nice and once things are officially set-up, his visits there should be relatively quick and routine. He had a plastic mesh mask made this week that will ensure that he’s always lined up in the exact same position for his treatments each time. Another downside, in addition to the radiation itself and its inherent risks, is the 1.5 hour drive to get to the appointment (one-way). This will be the status-quo, 5 days a week, for the next 6 weeks beginning Monday. The upside is that it’s not winter and the roads will be clear for easier driving. The general consensus is that most people are fine for the first month, but begin to feel the fatigue by weeks 5 & 6.

We also had two Jackson, WY appointments this week to connect with an oncologist there who comes up from Huntsman Cancer Institute twice a month on Fridays. There was a requisite scare that a 20 mg generic chemo pill would be $10, but the 140 mg version that was also prescribed was going to be $3,100/month. It’s since been figured out and should be the more reasonable insured price for both, but it’s ridiculous that people are forced to imagine, or worse – pay, such exorbitant rates during times like these. Luke will have his blood drawn in Jackson 2x per month during the chemo treatment to keep track of his blood counts, liver & kidney functions. The oncology personnel were all friendly and it looks like we have another good team on our side, semi-locally.

Chemo will begin with radiation and last the 6 week duration. Afterwards he’ll have a month reprieve from everything before beginning another 6 months of chemo. The chemo pill (Temodar) is taken at night and preceded one hour by an anti-nausea pill. The hope is that if you do get nauseous, you will sleep through it. Luke doesn’t tend to be very nauseous generally, so we’re hopeful he’ll be fine through this, but time will tell.

Needless to say, Luke is ready to get the ball rolling and start the routine. He’ll be back to work as much as possible beginning Monday – which promises to be a big day with everything beginning simultaneously.  He’s officially 3 weeks out and cleared to do things as he feels appropriate; so of course he ran 4.5 miles today and is eager to get back to his marathon training. His October 5th Portland Marathon is just around the corner… Good spirits persist.

Thanks again to everyone.  Your support is overwhelming.  xoxo

Wednesday morning brought us closer yet to the next big step – surgery. I rested with Luke in his room and helped to channel all the love coming our way through the big window towards Luke while he calmly rested in a very focused way – like the athlete he is, before a big game. Turns out hospitals are not very amazing about letting their patients sleep much before something like this, which seems to go against common sense. Sleep deprived as he was, he was prepared.We waited for the appointed hour – sometime between 2 & 3 o’clock. However, at 1:30 pm there was a bustle that the time had come sooner than expected. The nice Irish, soccer-loving, nurse, David reported that in 7 years of working here, he had never seen a resident come to fetch a patient as they did in Luke’s case. The resident reiterated this as he wheeled Luke via wheelchair downstairs to the surgery floor, asking if Luke’s feet were on board and noting that this was also the first time he’d done this.

The pre-op room was bustling. We were secured in a small nook where we were prepped by a very nice nurse who shared a story of her husband’s toothache that ended up being the result of a brain tumor and how everything was fine today. Next we were introduced to the anesthesiologist, her resident, the surgical nurse and a few other team members. Everyone was great. The anesthesiologist gave Luke a pep talk about remembering to breathe, the team effort of the process, how hard it might be and how they were all there to help him with anything he might need.

At 2:30 pm they wheeled him away after a small pause at the “kissing corner” where I sent him off with the obvious. One of the last folks we met before they took him away was a lovely gal from the research division of Dr. Berger’s office. She wanted to save a few select samples of the tumor for future research. Of course Luke agreed, but she wanted to more fully discuss the research, process and his case with me.

We made our way up to the sun-filled surgical waiting area and talked for an hour or more about his case, the nature of brain tumors – each one is like a fingerprint, totally unique. They are working on matching MRI imaging to specific parts of the tumor, i.e. if there is a section of the tumor that might grow faster on a molecular level, might it also be visually different. This would help doctors know more before they go in and/or in lieu of waiting for pathology results. She was an incredible lady who’s mother died of a brain tumor at age 45 – leading her to study medicine.

After our meeting, I was shocked to see how much time had already passed. At 3:55 I got an update from the surgery team that they had completed the mapping stages and were beginning the “surgery” aspect. I headed for Golden Gate Park, as directed by Luke. We both agreed that being in the park would serve us both better than spending the entire time in the waiting room. He promised to imagine me in the Japanese Tea Garden and so I went there as requested. It was a beautiful with so many shades of green. I continued to wander the park, finding the big trees and taking comfort in their magnificence.

The surgical team gave me hourly updates and at 6:15 I got word that they would likely be done in an hour. I eagerly awaited Dr. Berger outside of the surgical area as directed. Around 7:15 pm I got another call that things were taking longer than expected, but that all was okay.

The anesthesiologist came out at some point, saying that all had gone well and that Luke had told them that he was tough and had done a great job. A little before 8:00 pm Dr. Berger appeared. He explained that the tumor’s edges had been distinct and had not infiltrated any of Luke’s language or motor areas. He was able to remove everything he could see and supposed he got 99.99%. Of course there will be cells that have already divided and are not visible, which is where the radiation and chemo come in. However, these have the best chance of being the most effective when there is little left to attack. There was a small issue with Luke’s low heart rate, that when increased effected his blood pressure, but Luke, himself, did a wonderful job. Dr. Berger is an incredible individual and by all accounts a terrific surgeon.

He walked me up to the Neo-ICU where we intercepted Luke being wheeled through the hallway. He asked that I wait a few minutes for them to get him settled and further stabilized. Momentarily he waved me into the ICU to officially see Luke. He was enshrouded in blankets and resembled Mother Theresa. There was a suction draining off excess blood from his head, but all in all, he looked good. He gave me a “Hello honey” and readily remembered my name and was able to talk, though his head was in all kinds of pain, as expected. They had said that the first impression upon waking would be indicative of his recovery and it all promises to go very smoothly.

It took some time to get a handle on the pain, but eventually they were able to decrease it enough to allow him to doze. By midnight we decided he was in good hands and I decided that I was officially tired. Anna & I retired for the evening.

Thank you everyone for your support across the board!  We are so grateful for our community of friends & family – near and far. There is a huge sigh of relief to be on the other side of this first stage – step 1.

xoxo

Between 1 hour check-ups by the nurses, janitors, constant blood draws to measure his sodium levels (prevents seizures), and a 4:00 am high-definition, color MRI scan, Luke has gotten little sleep since checking into the hospital yesterday afternoon, but is in fine spirits. All the nurses have been terrific and some swing by just to chat since they heard how nice he is from their fellow crew members – the ‘blue team’ as Elsa refers to them.

He is calm and focused, ready for the surgery ahead. He is assembling his inner strength and channelling the energy we’re all sending his way. You can feel it in his presence. He’s ready and no doubt will be great.

This afternoon they did another calibrating MRI and mapped out Luke’s head with a dozen or so sticky life-saver-esque foamies called fiducials. Later we met with Dr. Perry, the neuropsychologist, who will be attending tomorrow’s surgery. He walked us step-by-step through the entire procedure in a very thoughtful and precise manner. He will be communicating directly with Luke as Dr. Berger maps Luke’s brain with a laser pointer of sorts.

First they will put Luke under in order to cut out a section of his skull. His head will be secured and he will be laying on his right side to maintain the open access to the left side of his brain. Once readied, they will “wake” him up. Dr. Berger will point his laser around the brain area and everyone will be looking for physical reactions to the trigger points of the laser. Luke will be able to respond as to whether a body part is experiencing tingles, numbness, or anything else that they cannot visually see. Then he will be told to count in a slow, controlled, orchestrated way – they practiced – to 20 or 50. They may do this a few times. All the while Dr. Berger is laser pointing and registering the the outcomes.

The next step will be going through a set of simple b/w line drawings – rooster, table, cake, car, etc. They practiced by going through the slides today. Dr. Perry took notes on any pause Luke took, what he specifically said and more. The best was when Luke was shown a picture of a sea lion. Luke responded as much and Dr. Perry prompted him if there might be something else it might be called, Luke offered both Steller Sea Lion and California Sea Lion. Seal is what he was looking for, but Luke informed that in fact the animal pictured there clearly had ears and was a sea lion, not a seal – Dr. Perry promised to look further into it and will likely be adjusting that slide and/or title in the future. Pretty funny.

The last test will be focused on reading and was composed of a handful of simple typed words – no longer than five letters. Dr. Perry stressed that Dr. Berger could be pointing the laser at any possible time, disrupting the thought process. So if he misses one, not to focus on the loss, but simply the next slide.

The mapping process takes 1-2 hours before they even begin to remove the tumor. The anesthesiologist has the power to bring Luke to full conciseness and/or knock him out as needed. Because of the location of Luke’s tumor they may perform most of it while he’s awake, allowing them to continue to map as they extract the walls and edges of the tumor. Apparently the brain itself feels no pain. Dr. Berger is also renowned for his patience, exactness and diligence in removing everything he can from the tumor’s edges – this will be especially important if the tumor’s edges are not distinct. Obviously the more they remove now, the better chances of the chemo/radiation getting the rest.

The entire surgery could last 5 to 6 hours and there will be quite a few people in the room between the neurologists, nurses, machine operators, etc. Once finished they will replace the puzzle piece of his skull, which will apparently readily heal itself and then suture/staple up his scalp. They will give me regular updates and we’ll be able to greet him on the other side. He will spend the first night in the ICU and then move back to a room on the 8th floor for at least another 2 days.

Swelling of the brain from the surgery may affect his language skills and memory, but as the swelling decreases it should come back. If his speech is much worse, they suggest a therapist to speed up the recovery process. The brain is amazing and Luke is one smart cookie. He is ready for the challenge and knows that he will be okay. He is incredibly strong inside and out. Here’s to a good night’s rest in preparation of the big day.

Thank you all for your love and support – it’s amazing and we are entirely grateful.

Thanks to Siri, we successfully navigated to UCSF, where they readily took us in. Anna took Elsa to the nearby and amazing Golden Gate Park during our appointment. Dr. Berger saw us directly and agreed with the immediacy of the tumor at hand. Because of the location of the 3 cm tumor, in the left frontal lobe, there is risk of impacting Luke’s speech with the removal of the tumor. Speech, intellect, and emotional centers of the brain are all dangerously close to this location.

Because of this they will use brain mapping during surgery. Dr. Berger “has extensive expertise in intraoperative mapping of the brain to identify the sites of motor, sensory, and language function and thereby avoid their involvement or injury during surgery”. This means they will basically remove the tumor while Luke is “awake”. Another neurologist will interact with Luke during the surgery to help identify when they are close to those locations and steer clear of them.

A quick hour later we were able to meet back up with Elsa and Anna and tour the park ourselves, which allowed for some fresh air and leg stretching – always a good thing. The park is absolutely beautiful and full of a variety of attractions – a great kid’s park, an aquarium, museums, greenhouses, tea gardens, etc.

Dr. Berger’s office indicated that they would likely check him in later in the afternoon to secure a bed and get the ball rolling for surgery as soon as it could be scheduled. We spent the majority of the afternoon there and grabbed some lunch before heading back to rest and collect a bag for the hospital check-in. At 3:30 they let us know they were ready and an hour later we checked into his new temporary digs, which offer beautiful views from the 8th floor. The nurse on duty was wonderful, as I imagine they all will be.

An important note is that Luke is feeling good right now – with a 0 pain level.  He is in good spirits, though we are all still reeling with the news, he purports that he will be fine on the other side as well. We all must believe with all our hearts that this will be the case. He is currently scheduled for surgery tomorrow (Wednesday), but we are prepared for anything. One day at a time.

Again, we can’t thank you all for your support and love enough. It means the world and will surely help the outcome. Pictured above is a heart cloud that appeared as I rounded a corner on a quick bike ride I took the afternoon before our departure from home. Clear evidence that we are seeing and feeling the love flowing our way. Thank you!

A week ago on Monday, July 21, a sudden, severe and worsening headache drove us to the Teton Valley Health Clinic mid-afternoon. Nearly dismissed as a migraine, a CAT scan was ordered to be certain. It was quickly followed by a MRI. These tests brought up the unbelievable news that there was a mass of some kind in Luke’s head causing the undue pain. We went home to unpack from our recent trip to MT and re-pack for points unknown – Idaho Falls or Salt Lake.Since time was of the essence (they recommended travel by ambulance), we opted to drive ourselves to Idaho Falls and check into the ER there, as ordered. They were expecting us upon arrival and we were well received. They admitted Luke, we briefly met with a surgeon and then we were transferred upstairs for the night. Finally, they were able to stabilize the intense pain in his head.On Tuesday morning I helped cut his curly locks before they shaved his head for a final, calibrating MRI. That afternoon brought him into surgery where they cut a dime-sized hole through his skull, above his left ear, and extracted 8 core sample for biopsy. A painful night followed, as one might expect after a hole has been drilled into your head.Wednesday morning brought full relief and Luke was eager to get home. It would likely be Monday before pathology results were in and while we anticipated the worst there was no reason to dwell on what we didn’t know during this time in limbo – we are cup half full people. With steroids to keep the swelling in his brain down, Luke was feeling A+ and went on to mow and weed-whack our entire property the next day, while I simultaneously unpacked from the MT wedding we’d been at that Saturday and hospital detritus from our stay there, depending on which bag I pulled from.

Thankfully the pathology came back Thursday afternoon, but the news was not good – a primary brain tumor, glioblastoma glioma, stage 4.

I spent most of Friday on the phone identifying our next route of care. Through a variety of recommendations, combined with our western location and the fastest possible availability to see a specialist, we were serindipidiously lead to UC San Francisco and the renowned care of Dr. Mitchel Berger. I can’t thank our PA in Driggs enough for her care, consideration and follow through in helping us narrow down our options and move quickly to establish our next necessary steps.  Thanks to her forethought to include Duke, the nations leading neuro-oncology facility, we received a personal call from the nations neuro-oncology guru, Dr. Friedman. It was totally unexpected and reassuring. It was also like talking to a superstar. He assured us that Dr. Mitch Berger is the best on the west coast and to ignore the statistics. People can beat this and that’s the mind-set you have to have going into it. Perseverance – our Alaskan motto will come in handy. Luke is definitely one to beat the odds. His call helped us finalize our course, in combination with the fact that we were able to secure an 8:30 am appointment for the following Monday – as in 3 days away.

We spent Saturday at home securing the homestead for our imminent departure and packing for an indeterminable time away. Of course we couldn’t have done either without the help of our local friends and family – for all of which we’re thankful and greatly appreciative. We left home on at 5:30 am on Sunday and after a brief stop in IF to pick up a MRI disc, we were on the road to Salt Lake to catch an afternoon flight to San Francisco. Luke’s sister, Anna, sweetly and thankfully flew in ahead of us and shuttled us magically to the hotel. 15 hours of travel and one tired family landed after being blown in a whirlwind to the Pacific coast.

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