Vacation, Day 2 Mt. St. Helens

We traveled early Monday morning to Mt.  St. Helens to learn about the 1980 eruption and to see the crater left from the eruptions. The Johnston Ridge observatory had great interactive exhibits

 about the volcano and a movie about the volcano and the rebirth of life in the area. The sad part about this leg of the trip was that the wild fires in Washington and Oregon caused the crater to be virtually unviewable. There was a dense haze in front of everything. We could see a little bit not very much. 

We left Mt. St. Helens and headed to our cabin in Oregon. 

Lake Quinault

In mid July our neighbors invited us to join them camping for a few days at Lake Quinault on the Olympic Peninsula. We were planning on camping with PA friends so we joined the two together. 

Lake Quinault is a beautiful place with a rustic lodge that President Roosevelt had lunch at when he signed papers to make the Olympic Peninsula federal forest land. The common elk found there is thus named the Rosevelt Elk. 

The campsites are on a lake surrounded by forest. The kids could easily swim and play in the lake. 

The kids Olivia and I went on a hike to see the worlds largest Spruce tree which was impressive. If you look at the kids next to the roots you can get a sense for its size. 

We found Sasquatch. 

After three days our friends Jen and Ben who we have known since our kids were born joined us. It was great to see the kids reconnect and just nice to be with old friends. 

We had our first day of rain this summer while we were camping but we were protected by a public pavilion next to our site. 

Our first group hiking outing was to the worlds largest cedar tree.  I thought it was way cooler than the spruce!

We are inside!!! It was too big to grasp. 

We went for a little drive to find a view hike but we never found the trail. On the way we found some tracks and poo!

We never found the trail but the view was great anyway!

Instead we drove to an interpretative temperate rainforest trail. There were signs throughout explaining the vegetation however we took

It as a chance to do interpretative dance in a rainforest trail. Paul and Ben did an excellent job. 

I am always amazed by the temperate rainforest. It's like a sleepy novel with mystical life that lures me in every time. The ferns and the moss and the canopies are gorgeous. After all of the forest sillies everyone needed some smores so we headed back to camp. 

The Hood Canal and peacefulness

Paul and I were so happy to get away for two nights last weekend to The Hood Canal. The kids stayed home with Olivia and we had our first time alone together in months. 

We stayed in a sleepy rural town called Union.

Friday night I fell asleep early and Sarurday we slept until 11!  We got up and found some fresh cranberry muffins at a catering place. The owner encouraged us to check out Mt. Ellinor which was a nearby hike. The maps said it was 3.3 miles round trip so it didn't seem too bad. We drove 8 miles straight uphill on a dirt road to get to the trail head and the trail was 100% incline. Shortly into the hike I was ready to turn around. We kept going and we got to a point where we could see Lake Cushman, the Hood Canal and the Seattle skyline. It was really breathtaking. 

Some pre-hike advice:

As we kept climbing the temperature dropped, the winds picked up and it started to drizzle. The cloud cover surrounded us and I could tell that if we kept going there would be no view at the top. 

Half way through this steep landslide pit we decided to stop. 

I was in it for the view and the view had disappeared. 

At the top of that highest rock was a 360 view of rainier, Seattle and all of the water. We promised to return on a better day with the kids because we know Noah would love to climb the rocks. 

We headed back down and the rain picked up so we were happy with our decision!

We stopped for an early dinner at 5 and went back to our cabin and both fell asleep until 1030!

We woke up dazed and confused. 

Sunday morning we decided to take a kayak trip on the canal and it was wonderful. There were seal pups in the water that were playing and popping up right next to us. We saw a great blue heron and tons of fish. 

The mountain in the clouds is the one we climbed. 

This is a far off pic of the seals 

We brought our kayaks back to shore and noticed the beach was covered with oyster shells and there were instructions for how many you could take. We didn't see any for the taking or have a knife to open them but it was cool. 

We returned Sunday evening with grateful hearts to happy kiddos.

The supine view

I'm lying in bed again. As I imagined, the 400mg dose is much stronger. I'm in bed by 9-10 pm and generally sleep until 9 am and then I am averaging 2-3 naps a day. It's sobering to think I've been napping most of the year. 

January -- surgery and bed rest

February -- recovery from surgery

March -- recovery from surgery 

April -- chemo and radiation 160mg

May -- break/recovery from radiation 

June -- chemo 300mg 

July -- chemo 300mg 

August -- chemo 400mg 

I'll have a minimum of three more months of chemo and then they will reevaluate. 

This higher dose has also brought with it morning nausea and just an off and on queasiness. 

As dreary as I sound I know it's not that bad. For at least half of every day I feel normal and I can rally when I need to.  I have pushed myself to make the most of the summer and I'm grateful, oh so grateful, that I have done that. 

I find myself falling into a few routine traps that I am learning to recognize. 

1. I regularly long for my "normal" life. I miss the ability to go for a run or shop all day or take my kids on adventures. 

Instead I need to recognize how awesome my life is right now. I'm still going on amazing adventures and exploring the world and enjoying my family. 

2. I worry too much and too often about the what ifs of the future. I need to remember that God is in control. Sick or not, medicine or not I have no control over tomorrow. My self reliant persona struggles to remember that it is all perfectly planned and full of beauty. 

3.  I allow the fatigue to deflate my joy.

I need to remember that my joy is not dependent on any of this but rests  in the knowledge that I am loved and  chosen by Jesus. 

When I was listening to music the other day in the car this song by Laura Story came on. It is one that I know well but I needed to hear it again. 

"Blessings"

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need

Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life

 are Your mercies in disguise

We pray for wisdom, Your voice to hear

We cry in anger when we cannot feel You near

We doubt your goodness, we doubt your love

As if every promise from Your word is not enough

And all the while, You hear each desperate plea

And long that we'd have faith to believe

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know that pain reminds this heart

That this is not,

This is not our home

It's not our home

'Cause what if your blessings come through rain drops

What if Your healing comes through tears

What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life

Is the revealing of a greater thirst this world can't satisfy

What if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

MRI Results/Doctor's Update

I had another regular MRI yesterday and a follow up with my doctors. I was particularly anxious yesterday and I am not sure why, but I just had a terrible feeling going into the appointments. The Radiology department was 50 minutes behind schedule and so there were a lot of anxious patients hanging around. I think they schedule brain tumor patients on the same day, likely when the doctors are in the office, because there are always lots of craniotomy scars floating around. My MRI tech played some sort of really loud and aggressive hip hop music during my scan which was awful. I can request and next time I'll request classical music. I rushed up to my appointment after the MRI and the doctor said the scans looked fine. She showed us the cavity and the surrounding tissue which looked similar to last time. There are some white cloudy areas a little behind the cavity that they are calling post radiation scar tissue. Apparently the radiation does some damage to the healthy tissue (which we knew) and that area then becomes obvious on scans. They will watch that tissue closely to see if it changes or darkens over time. She did not have any concerns about the scan. I have been having some numbness in my feet over the past week and I shared that with her as well. There is a likely chance that there is mild seizure activity causing these episodes and some other symptoms. The doctor assured us that a mild focused seizure is completely normal because there is an empty hole in my brain and it causes misfires while the brain tries to readjust and understand what is happening. The mild seizures are in no way related to any tumor growth. The doctor asked me to keep a log at this point and just monitor when it is happening. She said there is a lot of room to increase my seizure medicine but for now she just wants to watch it. Last month I tolerated the 300 mg. of TMZ/chemo much better than the first month and so she decided to up my dosage to 400 mg because that is what my treatment plan calls for. As long as I can tolerate the higher dosage they will keep me there to maximize the benefits of the medicine. At my last visit the doctor recommended an ample time for activity and for rest to be scheduled into each day to help me manage the medicine and to keep a routine. It's a lovely idea, but unfortunately it is not a reality. The need for frequent naps in addition to short term memory loss and confusion added to two emotional and active children doesn't allow for a smooth flow to the day. I am active in the sense that we are on the go as usual, so I suppose that counts. I have been focused on the prescription to "live life as if everything is normal" which came out of another visit and so I am trying desperately to maintain grocery shopping, laundry, and regular household duties. Slowly but surely we are moving into our new house. Olivia (a friend from West Chester staying with us for a little) has worked endlessly to help us with painting our interior. This weekend the exterior will be painted which I am very excited about. Unfortunately we are still living under a mound of boxes but we are sorting our way through. Thank you for your continued words of prayer and support. I value each and every one and it helps me to feel connected to you. My next appointment is on September 3rd and it will be a regular appointment with no MRI.

Our daily bread

This is the video from church on Sunday that I loved. Enjoy. (We are studying the Lord's prayer)

Cama beach and the next round....

We just returned from a few days on camano island with a bunch of friends from our neighborhood. It was a really nice and simple time. The park was filled with rustic cabins that were directly on the water. 

Paul and I went out for a quiet canoe  ride alone (!) on the Saratoga sound.

As we were paddling back to the beach we noticed there was a huge seaweed colony growing under our boat and then a giant red hawk swooped over us after being perched on a dead tree.  I was so aware of how there is so much life happening that we aren't aware of. Some  of the people we are camping with set crab traps and caught enough crabs for dinner. They went out on our canoe and set the traps and when they returned the traps were full. Again the life was flourishing under the surface invisible to the human eye but so much was happening and LIVING. 

I was reminded so keenly that there is so much good and beautiful life happening all around me that God sees and is pleased by and I am caught up in the business of death. I am consumed by lists and expectations and defeat that I too often fail to notice all that is so good and perfectly and harmoniously unfolding. It's as if there is a symphony of God's  doing and I'm only focused on one instrument out of tune. 

I can picture the crabs and the seaweed and the hawk and my children's dirty feet after riding bikes well past dusk.  I just need to remember and to focus and to enjoy this abundant life.