Category: Travel

After everything that had happened over the last week, by Saturday, November 23, we were feeling the confinement of the hospital and Laura really needed to get outside and feel the sun on her face. I just wanted to get to something “normal” – like a real bed, and eventually home.

The day started well with some sunshine coming in the windows and Laura’s breakfast in bed delivered. I had to get my own, since the medical plan didn’t cover my meals. But the cafe downstairs was very well priced and had some decent food – not like some hospitals that I’ve been to.

After breakfast, we waited a while for the discharge to come through. While it seemed like forever, it probably was only an hour or so. Finally, our day-shift head nurse Kyle came in and told us that after he gave us the proper instructions, prescriptions, and paperwork, we were free to go. We listened to his instructions, especially about when Laura could dunk her head underwater (not that we had plans to go swimming yet) and for the tapering off of the medications they were giving her during her stay. He told me the medications were in the hospital pharmacy and that I could go pick them up at any time. He then removed the IV lines in Laura’s arm and permanently disconnected the monitor feeds. Yay! No more finger sensor (which was totally annoying, BTW)!

Laura sent me down for the medications while she got dressed, ready, and packed. I came back into the room, and we strode victoriously out through the hospital to the front door and on to the car.

Honestly, it felt odd to be outside during the day. Most of the time that I had been outside was during the evenings or nights when we would have hot chocolate, and only once during the day when I had to buy some additional clothing for myself: I had only packed for 4 days, so I ran out of clothes on Tuesday and went shopping.

And by “odd”, I’m not sure I can describe how it felt. It was good certainly, but life had changed. We had quite literally faced death and survived, but we also knew there was a road to recovery ahead. We weren’t sure how long yet – and still aren’t, but it wasn’t like everything was all “done” just yet. There was a sense of “what now?” as well. I think it felt more like a happy/sad reprieve. Certainly, happy because we were out and alive and Laura was better every day, but sad in the sense that we knew the fight wasn’t quite over yet: maybe it was kinda like halftime in the big game. Even now looking back, it still doesn’t seem real, but I know that it was. Like I said – it’s hard to describe unless you’ve lived it. Some of you have.

But it was Saturday, sunny, and we were free to move about town. Boise has a street market every Saturday and we had been there before several years ago, so we thought to go again and just walk around.

So out we went. You can see that Laura is happy to be outside and moving. I was so nervous, though, that I may have been hovering over her a little. She was still a little tired and low on energy but walking around the market was uplifting for us both. We didn’t see the one hat vendor that she remembered from years ago, but that week seemed to have a smaller turnout than before, probably because it was not summer. After about a half hour, she was done walking, and we made it back to the car.

We had been invited to stay overnight with a couple from the Awaken Boise campus and we were happy to take them up on their offer. We got there around lunch for some Italian sausage soup, which we enjoyed, and had some good conversations before we got settled in their guest room.

As you can see, Laura is very happy to be on the outside of the hospital and at the beginning of our trip home. She took a long afternoon nap sprawled out on their California King guest bed – Wow! Once she hit the mattress, she was out in less than a minute. SO much more comfortable than the hospital bed. We ate dinner with them again than evening and turned in fairly early.

In the cold morning (notice the frost on our car), we attended services at Awaken, got more prayer and lots of hugs. After an amazing lunch at Tupelo Honey (complete with grits and banana pudding), we headed out on the first half of our trip home.

After remembering the snow and storms of the previous weekend, I was wary of heading into the passes driving 8 hours straight through. Plus, so much time in the car all at once would have been hard on us both. I made a reservation in Kennewick, WA, which was about 4 hours’ drive or halfway home. Thankfully, I had enough Marriott points left for a free night. Too bad I didn’t get any for the hospital stay! The trip was miraculously clear of snow and an easy relaxing drive. We got to the hotel early in the evening, had dinner and went to sleep. It was the most activity Laura had done in a week, so she was tired but happy.

The next morning, there just happened to be an Original Pancake House. Yum!

After that yummy breakfast, we hit the road again (also peaceful and non-eventful) and arrived at home at a decent hour. All told, the return was easy and good.

At this point in the journey, we were at a bit of a “reprieve” where we were no longer hospital-bound, but also not yet in the next part of the recovery/treatment phase. We knew that once we had gotten settled in at home, we were probably expected to begin the follow-up visits to the local hospital.

I will leave this section on the positive notes that our insurance covered almost all of the unforeseen medical bills, which were staggering; we were home safe; and we were still together to face whatever came next.

After the whirlwind stressful day of surgery, I was not really able to sleep well at all. If any of you have stayed in a hospital, you know that the nurses are masochists and love to make you sleep deprived. Yes, I know it’s their job to make sure the patient is alive and well, but waking people up every 3 hours after they JUST got to sleep is, well, mean. In spite of that, I have to say that our nursing team were all wonderful people.

Not that I was really asleep anyway. I could not relax after the surgery, partly from relief, partly from joy that she was out and still alive, and partly because I was also just too tired to sleep. Or maybe it had something to do with the coffee.

The sleeper sofa was wide and solid, but a little hard. It was a nice touch, though.

Laura at this point was itching to get up, sit up, walk around, and just do things in general. She had been laid out with pain for so long, that the absence of it was making her want to start doing things.

Of course, major surgery can take a lot out of a person, so she was also sleeping quite a lot – but only in small bursts, since she kept getting woken up for “vitals” checks.

After the first day, the change in Laura’s alertness and awareness was amazing. She was recovering faster than anyone thought she would. Before surgery, the tumor was pressing her brain so hard, that not only did it hurt constantly, but she was even unable to think clearly. Now that it was gone, she started doing and thinking more a little at a time. To me, the change was remarkable, and she was on her way back. To the doctors who came by periodically to check on her, she was doing amazingly well.

DO NOT PANIC – These are good news scans below:

The neurosurgeon came to show us the CT scan for the after-surgery look at the place where the tumor used to be. The before is on the left, and the after on the right. They look different because the before is an MRI and the after is a CT scan, so they have different resolution and contrasts. The white area on the before is the tumor. On the after shot, you can see a lot of black areas: those are air gaps where the tumor no longer exists. You can even see the gap between her skull and brain to see how much extra space the tumor was taking up. This picture was taken immediately after surgery, but even so soon after surgery, the midline had moved over half the distance it was displaced by (now only 8mm), and the brain had begun re-expanding since the pressure was no longer there. HUGE improvement! No more headaches!

Those flowers are on a wall mural in the NeST area, and you can see that Laura is much happier walking around outside of the room. They would not take out the IV plugs “just in case” while she was there. Those were bothersome for her until the day of release.

That night, 24 hours after surgery, Laura wanted to wash her hair – but, with the incision and the sealant on her scalp, she had to be very careful. Luckily, nurse Madie was able to help her do her hair properly without causing damage to the incision area.

The next day (Friday), after several visits from doctors, therapists, and nurses, we were told that Laura was doing so much better: that they expected people who had been post-op for 3 weeks to be doing as well as she was doing only 2 days after surgery. The recovery was going spectacularly. So well, in fact, that Laura was given a “hall pass” to wander around the entire hospital – just not allowed to leave yet. They have an outdoor observation deck/lounge that we were supposed to go to, so we suited up with jackets and sunglasses ready for the sun.

Unfortunately, the deck ended up being closed for the season just the day before. We then proceeded to wander around the building, stopping at the gift shop and finding a place where the view of the mountains was the best. Laura was disappointed that the selection of T-Shirts at the gift shop did not include any post-surgery “victory” shirts. She would later rectify the situation with orders from Etsy.

Once we got back, we met the oncology doctors in the NeST hallway – they were looking for us. We had never met them, but I could tell from their expressions that they were the “bad news” doctors. What they told us shouldn’t have been a surprise for us, I suppose, but it wasn’t something that we really had thought through. With the resounding success of the surgery and the clear relief from pain, we didn’t think too far past that.

What they told us was that the tumor was something called a glioblastoma. At the time, we had never heard of this. Apparently, there are things called “glial” cells which support the neurons in the brain and that is where this tumor grew – right on the outside edge of the brain. Good for us since it could be removed easily, instead of some tumors that grow deeper inside. More tests were still to be done to determine the type of glioblastoma and its grade. Brain tumors inside the blood-brain barrier do not have “stages”, but “grades” because they do not spread outside of the brain. Other cancers in the rest of the body are classified in stages, because they can spread to other areas or “metastasize”. Most brain tumors do not do that.

The implications of that, however, meant that they were referring us to a cancer treatment center in our local area. If I had to deliver news like that frequently, I would also have a sad expression on my face most of the time.

The shock of this was somewhat mitigated by the fact that the final test results were a few weeks off, and by the fact that God had gifted us with a wonderful care team in a great hospital, and that He had also given us joy to be alive and together. It was almost like a vacation – if on a vacation you go scuba diving, get the bends, have to go to a decompression chamber, and get treated for a shark bite while you’re at it, but still get to be on the beach.

Even that news couldn’t keep us down for long. We knew that we were close to being discharged and that we would be coming home soon.

Plus, we were facing this together. Always.

Okay, that title may seem a bit snarky, but it’s more than that: it has to do with our acceptance of what had to be done and both of our openness to those who were there to help us.

… and it’s a little snarky as well. We have to keep our sense of humor.

As we left the story last time, we were waiting for the surgery to happen on Tuesday, but it was delayed. Laura, who had been told to fast from food & water from midnight the night before, was understandably both hungry and thirsty and cranky about it – especially since I ate lunch in front of her. (Which by the way were some yummy tacos brought to me by our new friends from Awaken Boise.)

After they delayed, they gave her the green light to eat and drink until midnight again. I was sent out into the world to obtain sustenance in the form of In-N-Out Burgers, which I expeditiously procured.

By this time, Laura was feeling way more alert after the steroid injections. The swelling in her brain was clearly affecting her and the steroids brought her right back from the edge: but it wasn’t enough. They still needed to do the surgery.

Wednesday morning arrived (November 20th) and we were both understandably nervous, Laura even more so since she was more alert and conscious due to the decreased swelling. However, here is where the “open mind” comes into play – we were both feeling a sense of peace that we were in the right place at the right time and knew that God had placed us there with the neurosurgeon He had chosen for us, and the church family nearby to support us. In spite of the dire situation, we were both ready for what was coming.

And then the nurse came in. It was supposed to be at 2pm, but they came around at 1pm to start prepping her and wheeling her to the “ready room” or whatever they call it. I quickly packed up my backpack with my computers but left all of our clothing and personal items behind in the room because I didn’t know where they would put her after surgery. Seems you don’t necessarily come back to the same room afterwards. In our case, Laura got assigned to the “NeST” the Neuro Surgical Trauma wing for post-surgery recovery. There, the nurses specialize in helping those with neurological trauma recover. I assumed of course that I would have to go back and get our things once we knew which room we were assigned to.

I worry a lot about logistics even in the face of such traumatic events. I think it comforts me to dive into the details and not look as much at the big picture.

Anyhow, they started wheeling her to the operating room and deposited me in the surgery waiting room. They had little walled-off areas for families and friends of people undergoing surgery to gather in. I was given room 5 – there were about 6 chairs, but there was only me. There were some other small family groups in other “rooms” waiting for their loved ones. As I sat there, I started notifying people through texts and emails and however else I could and then pulled out my computer to send a note to my managers (who were very understanding and supportive about the whole situation). Just as I was settling in for the long wait, which was supposed to be between 4 and 5 hours, I was called into the hallway outside the waiting room. Laura actually called me on someone else’s phone. It spooked me a bit since I had her phone with me, but she wanted me with her in the final prep area. I jumped up and ran in. Even though I had just seen her not 20 minutes ago, I can’t describe the sense of relief that I felt seeing her again. She just wanted me with her as she consented to the operation and the surgeon went over some of the final details. Laura asked him to not just be an excellent surgeon, but also an artisan: to rise to a new height in his skills.

These are two pictures before she went in to prep for surgery. The first one was before they left me in the waiting room. You can see the look of pain on her face here. The second picture is after they let me in one more time to see her before they wheeled her into the operating room. Here, we had just prayed and given over our worries to God. She was now in His hands and the skilled hands of the surgeon and his team.

They escorted me back to the waiting room where I was beginning to feel some of the weight of what was happening. Thank God for good friends and family and the distractions they gave me. I think I spent the first 3 hours of the wait on the phone to several people, all who wanted to just talk and comfort me while I waited. Thank you, Cindy, Charles, Daniel, John, and Sally, for helping me through this hard waiting time.

After talking so much, I was glad for a little quiet. Since it was only 3 hours in, I knew I had to wait at least one and possibly two more hours. I had a little coffee – yes, it was 5pm and that would mean I would be up all night, but it was warm and comforting. And free. I read some in a book. I tried to sleep. I started to get nervous. They had wheeled her in right around 2pm, and now it was after 7pm. 5 hours and I was getting nervous. Several people started texting me and worrying with me (it’s nice to share the pain, right?). 8pm rolls by and still no news. The surgeon had told me he would call me directly after the surgery. I made sure my ringer was on and that it was loud.

Finally, at 8:47pm I got the call: she was out and in the recovery room. He told me that they were able to remove the tumor and gave me a rather too-detailed description of it. He said she was going to take one or 1.5 hours to come out of the anesthesia, so I would have to wait a little longer before I could see her. The sense of relief was powerful now that I knew the dangers of surgery were past. And there were a lot of potential dangers in this kind of surgery. That’s why they pay neurosurgeons the big bucks. I won’t harp on all of the risks involved, but let’s just say that in the brain, the tiniest mistake could shut the wrong things down and have devastating effects.

He did not make any mistakes. Thank God!

About an hour and a half later, I heard a nurse come into the waiting room and start looking around. Since the little rooms were all semi-private, I stepped out into the hallway to see what was going on. She looked at me and said: “oh – you look like who I’m looking for. Your wife is right outside!” They were taking her to get a post-operative CT scan, and she had insisted that she be able to see me before they wheeled her back for that. She was right in the hallway on the bed – a little groggy after all the drugs, but she was still there: still herself. I could see that.

After our emotional reunion, the nurse told me to go to her new room and gave me that room number. I was still worried about getting all of our stuff out of the old room, so I was determined to move all the stuff from old to new. But first, I was going to check out the new room and drop off my backpack before going to get all the stuff. Well, once I got there, I saw that didn’t have to bother: they had gathered all of our personal item, put them into bags, and taken them to the new room. I was so touched that they had done that. And then I saw the new room. Wow! It was huge! Like a luxury suite! I knew then this bill would be astronomical.

On the couch, you can see the bags of personal items they brought to the room for us. You’re seeing the room without the bed since they put her in the new bed while in the OR and wheeled her up in it. The couch in the back is actually a sleeper sofa. Much quieter than the squeaky cot they rolled into the previous room, but a little too firm to relax all the way.

I was just standing there looking at the room when the shift nurse came and introduced herself to me. It was only a few minutes later that Laura arrived, and they plugged the bed in up against the wall. By this time, it was about 10:45pm.

Here is Laura with her new hair style. It looks like they used hair gel to make her hair stand up away from the incision. They actually used super glue to close the cut and put a sealant over the top of it. It makes the scar much cleaner and tidier than if they used stitches or staples. She is still scraping that sealant off in places a month later, but most of it is gone now. This picture is also before the swelling set in, which still hasn’t completely gone away.

A close-up of the incision so you can see it was barely there. The yellow stuff is iodine I think, and the purple/blue stuff is a marker where they traced out where exactly to make the incision. They only had to shave a narrow band where they needed to cut, so she still has most of her hair and if you’re not looking for it, you can’t even tell they cut that part away.

Of course, what was most important for Laura at this time what that I had promised to go get her some hot chocolate once she was out of surgery and able to drink it. At 10:45 I was sure that Dutch Brothers would be closed – and it was. However, there was one nearby that was open until midnight. So, out into the cold I went to obtain the desired hot chocolate (the best you can get from any coffee place, by the way).

This is Laura enjoying her Dutch Brothers Hot Chocolate and our angel nurse Madie.

At this point I was joyful, emotionally exhausted, and yet too wired to sleep much. While I waited between the surgeon’s phone call and the nurse showing me to Laura, I notified all that I could through text messages and phone calls. Now that we had our hot cocoa, it was time to try and rest.

With Madie’s help, I pulled out the sofa bed and got ready to sleep. It was finally time to end this whirlwind of a day.

Yes, this is another long one, so strap in!

As mentioned in part 1, we were planning our short 3-day weekend trip to Boise to do a couple of things. First, the last treatment of Cereset Laura had scheduled for Monday, November 18th. We took the opportunity to leave on Saturday, though, so that we could arrive early enough to attend church services at the Boise location of Awaken Church. The plan was to leave early on Saturday, drive a leisurely 8 hours to Boise, and arrive in time for an early dinner.

Things did not go quite as planned.

Since Laura was still in considerable pain, we were not able to get moving until well after noon. That meant we would be arriving late. The ride there for Laura was also very excruciating. She was unable to relax and sleep in the car because the pain made it so uncomfortable for her. But, after a long and painful drive, we arrived and found a downtown restaurant that was open late.

The next morning, we attended church and spoke to several local people and got lots of prayer. It was very good to have a part of our church family in another city to help support us.

On Monday morning, Laura was in even more pain than before – in fact, it seemed to be the worst so far. She was unable to really focus, but even so, we were able to pack up and check out of our hotel and go to the Cereset clinic. Once there, Laura was in so much pain that she had trouble getting out of the car. We finally went inside and met with the clinician. After talking to Laura for a little bit, she felt that she was unable to continue and do the actual treatment. In fact, she recommended that we find the nearest MRI place as soon as we could.

She happened to have a friend who worked at an imaging center, so she called her, and they found a local MRI place that had availability for us to walk-in right away. So, we got in the car and drove there as fast as we could – all while watching out for large bumps or potholes – bumps made her head hurt even worse.

Once we got there, we were fortunate enough to be the only ones there, so they did a quick intake interview and brought Laura back for the scan. While she was in there, I dealt with getting the MRI paid for. They could either do insurance or out-of-pocket payment. Insurance would have required pre-authorization, and we didn’t have time to wait for that. We chose the out-of-pocket option, and it was not very expensive at all – it only cost $550 for an MRI. I was expecting several thousand but was pleasantly surprised at a much lower cost. I had a good chunk of that in my HSA account, so I used that and paid the rest on the credit card.

Then, after waiting for the scan, everything changed.

One of the nurses came out to talk to me. He had gone to the back with a happy expression when I first met him after his lunch break, but when he came out to talk to me, his face was anything but happy. His concern and sad expression chilled me, but what he said scared me even more. He told me there was a growth or as they said a “mass” in her brain and that they were calling an ambulance to take her away to the emergency room ASAP.

I was in shock.

Laura was in shock too or would have been if the pain wasn’t distracting her. They wheeled her out on a gurney and straight into an ambulance. Neither Laura nor I had ever been in an ambulance. I still haven’t – they wouldn’t let me ride with her, so I had to follow in our car to the emergency room.

They took her in the side entrance, while I had to go in the front door, and I had to wait.

Once they let me in to see her, they made us wait some more while they performed several tests and exams. They took her in for a CT scan to go along with the MRI they did earlier. Once that was done, a neurosurgeon came in to talk to us. He had a very kind demeanor and a quiet confidence about him. I have heard rumors of the arrogance of surgeons, neurosurgeons especially, but this man did not have that – he in fact just seemed like a normal person who was genuinely concerned for us. His compassion for us and gentle demeanor helped to guide us to make the best decision we could regarding Laura’s treatment.

He explained that there was a “mass” in her brain and even showed us the images. He showed us what the MRI displayed as a “mass” on the right-hand side of Laura’s brain, and it was shifting her midline about 16mm to the left. It was so big that it was pushing on her brain and eye, and the pressure alone was causing her headaches. The estimate of its length was about 7 or 8cm long. That’s about 2.7 – 3.1 inches.

Above is the picture of the of the “mass”. I’m not calling it a tumor yet since we didn’t know definitively what it was at this point. The “mass” is the white colored area, and you can see the midline shifted over to the left. We will show the “after” images in a later post. There should be more “texture” than the picture above is showing, but much of it is compressed by the tumor so it doesn’t show up as a normal looking brain.

As he showed us these images, you can imagine that we were scared. The neurosurgeon advised us to get this taken care of as soon as possible. We agreed. They had an opening in the surgery schedule the very next day.

Playing into this decision was the fact that the “bomb cyclone” had just blown through the Pacific Northwest piling up the passes with unseasonable amounts of snow. That would mean that if we were to drive home with her in this condition, in such unbearable pain, we ran a huge risk of getting stranded somewhere without heat or food and nowhere near any decent emergency care. Plus, that would also mean that the driving time could double as drivers (me included) would be driving slowly and carefully. It also had blown out power across Seattle – even our house in Sammamish was without power at this point. In fact, it didn’t come back on until Friday. It was a good thing we were in Boise for all of this.

They admitted her to the hospital, which meant checking her into a room overnight while we waited for surgery.

That sounded quick the way I wrote it, but getting admitted to the hospital takes a good amount of time. I think we were in the emergency room for 5 or 6 hours before they finally wheeled her up to the room.

Since we had checked out of the hotel, all of our stuff was in the car, and I had no place to sleep. Fortunately, they were able to wheel a cot into the room to allow me to sleep next to Laura. This was very gracious of them, and the only way we would be okay with staying. I certainly wasn’t going to leave her side. Once we got her to the room, I was able to bring a few things up from the car for our comfort – including Laura’s pillow, which we had brought for the weekend.

In the morning, we discovered that our little room had an excellent view of the mountains around Boise.

The room was small, but the nurses were great at keeping an eye on her throughout the night and the next morning. Maybe they were too good, since neither of us got much sleep as they kept waking her up to take vitals.

They started giving her some things to control the swelling in her head, and once it started to take effect, she came alive and alert again: almost back to herself.

While we waited to be called into surgery, some of the pastors of the local church came to visit us and brought me food – I was starving! Laura wasn’t allowed to eat since she was scheduled for surgery that day. They also spent time with us and prayed for us.

The surgery was supposed to be at 4pm, but as that hour arrived and passed, the surgeon came by to tell us that because the last surgery went over time, they would be doing the surgery the next day – on his day off even.

That meant another night on the squeaky cot in the hospital room for me. Another night of Laura getting poked and prodded and woken up every 3 hours, but at this point I had taken the rest of the week off work and had nowhere else to be except there by her side.

So, we waited.

To be continued…