1st Round Treatment Follow Up

Wednesday I had my appointments to follow up from my first round of treatment.  The list of reasons I have to thank God for are endless.  It was a day full of good news.

First,  I had my MRI.  It seems like a something simple, and it is.  However, I have to get there an hour early and get set up on an IV drip every time I go so that they can put a contrast dye into my body.  The dye highlights tumor areas during the MRI.

After the MRI,  Paul and I grabbed some lunch at the cafeteria and then headed to my first doctor's appointment with my nuero-oncologist.  He was already able to see the scans which was amazing!  He brought them up on the computer and said they looked very good and he saw no reason to worry.

He then discussed that he felt it was best for me to continue on the chemotherapy pills.  The study I quoted a long time ago with IV chemo showed that patients who continue on with the chemo after the radiation/chemo combo do better than patients who don't.  They do not have studies for this particular type of chemo but they assume it will react the same as the kind that was used in the study.  He recommended a 6 month period to possibly be renewed up to two years.

The chemo is the same medicine I took for the 42 days in March/April.  The dose that I will take is more than double what I took before, but it is for 5 days out of a 28 day cycle.

There are of course positives and negatives to this.

The positives are that this is still a pill form that I can take anywhere.  While it is the same medicine I was on before,  it is an increased dose and so there is a possibility that I will have an increase in side effects.  My oncologist said that is more likely I will have symptoms of fatigue, weariness and tiredness than symptoms of nausea and vomiting.   The side effects are generally going to be present during the 5 days of medicine and for up to 5 days after the medicine.

Another positive is that I didn't believe that I felt any side effects from Temodar before and so I'm hopeful I won't feel any again, even with the increase.

In addition to the chemo medicine I'll have to go in every other week for blood work and see my doctor once a month.  I'll have another MRI in two months and then if everything looks the same another one two months after that.

We reviewed my blood work from the first round of Temodar and my numbers held up really well.  There was one area where my numbers dropped a little but not to a point of concern.

If I don't tolerate these rounds of chemo, either with a drastic change in blood cells or with extreme side effects the doctor said I can stop taking the pills.

After this doctor, I then met with a radiation oncology resident who performed a routine neurological exam.

Lastly I met with my regular radiation oncologist and he shared the first doctor's sentiment that the scan looked great.

He brought up the images for us to look at more closely and was able to put the image before radiation and the image yesterday side by side.

Basically, when you look at the picture of my brain, there is a big black hole where the tumor used to be.  This is called the resection cavity.  The doctors focus on the perimeter of this area closely because it is most likely that remaining brain tumor particles would be in the area around where the brain tumor used to be.

For the most part the pictures yesterday had cleaner edges around the cavity than they did in February which likely means that the radiation and chemo did their job.  There was one area where there was a white section and we asked about that.  The doctor said that most likely it is scar tissue from the surgery and that it would be an area to watch.  At the next MRI this area will either look the same which means it is scar tissue or it will grow and change which means it is made of brain tumor particles.  The only way to really tell what is in the white area is to open me up and take a biopsy, which they aren't going to do! There is no imaging test that can tell what is in that area.

I asked why there would be particles there if they got 100% of the tumor and he corrected me to say that they got 100% of the tumor that they could see.

So, the doctors were very pleased with the images and the blood work from treatment and sent in prescriptions for the chemo pills and then sent me for another round of blood work to get a new baseline for the next round.

If you have me on your prayer list, specific prayer requests I have are:

that the next round of treatment has the same minimal side effects as the first

that my blood work holds up through this next round and my bone marrow remains strong

that the white area in the scan is scar tissue and remains unchanged at the next MRI

that I can push through and view all of this as a great blessing... none of it is difficult and I feel really great and I need to focus on that!

Bird Wisdom

I bought a little gift for a friend with a birthday coming up and this was the quote on the back:

Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, knowing she has wings.

~Victor Hugo

2 weeks out from treatment

It's been two weeks from the end of treatment and I feel really great!!!  I've been cooking and going to the gym and packing and painting.  I haven't really been taking naps or feeling tired at all.  I praise God for my energy returning!  I'm waiting for that slump to come and it should be here soon, but for now I'll take the great days!  I haven't really been noticing any vision issues really at all, either, which is really nice.  The only symptoms I am noticing are regular short term memory loss and trouble with noise/chaos/decisions.  I can put something down and then it will take me an hour to find it.  While this sounds really benign (and it is), it is very frustrating.  I can lose my coffee 10 times each morning.  As the doctor told me before, it is hard to know which symptoms are from radiation and which ones are just normal aging.  Decision making has also been particularly hard for me.  It took me almost a month to decide on a flight and that was with asking Paul every night to review details and help me to make the decision.  With moving, traveling, summer plans, kids camps, school end of year parties, birthdays, anniversaries and more, I see nothing but blurry lines and a jumbled mess.  I am missing things I never missed before with presents, special days and just my (old) normal thoughtfulness.  I have to focus on one thing and only one thing and I can't multitask.  I apologize if you are on the (not) receiving end of this but as I was trying to explain to Paul it is as if all of these things are just floating around in my head and I can't grab them to put them in any sort of order.  I can't get to a point where I can plan for things coming up because I am trying to focus on a) where I put my coffee and b) what HAS to be done today.  Again it's a weird and challenging struggle between being completely at peace because I know that it is a great blessing to feel well and be functioning and alive and a complete panic because I simply don't have the ability to get things done. So, I figure I'll just ask for forgiveness a lot.

In other news, my  neighbor has a dear friend who has been battling brain cancer for 10 years now.  She has had 4 craniotomies and gone through multiple rounds of chemo and radiation.  Each time her tumor has regrown.  Each surgery, however, has come with side effects, some of which are irreversible.

A recent study has come out that shows that cannabis, yes, cannabis, has the power to shrink and perhaps cure brain tumors.

My neighbor's friend has been taking a medically altered form of cannabis that has the "high inducing" part removed and just uses the medicinal part.  Since using this compound she has had the longest span of no regrowth since she was diagnosed.

This is all mind-blowing (no pun intended) for goody two shoes me and I am 100% not on board yet. It is legal in Washington state and my doctors have said that there is great promise in these treatments.  We don't have any signs or evidence that my tumor has regrown yet and so this isn't even on the table as a remote possibility, but the research is really amazing.

I'll be thinking and praying about this one for a long time!

http://www.medicaldaily.com/cannabis-shrinks-brain-tumors-associated-highly-aggressive-form-cancer-310720

http://www.huffingtonpost.com/2014/11/18/marijuana-brain-cancer_n_6181060.html

Floor before and after

Camp friends!

Two weeks ago I had a lovely visit from a long time friend.  AJ and I met somewhere around 12 years ago.  We circled with many of the same friends through Camp Mensch Mill.  AJ was a counselor there in the summer while I primarily helped during the school year with teens.  We did end up going on several summer vacations together to our friend Amy's family home in Hilton Head.  On those long drives and those amazing and fun weeks we learned so much about each other!  AJ and I have always had a knack for wearing the same clothes and liking the same things.  One amazing thing about this crew of friends is that we have all gone very different directions in life and to different places in the country but we all make a huge effort to invest in our friendships and we manage to see each other at least once, sometimes several times a year.  AJ lives in Providence, RI now with her two beautiful girls and awesome husband.

When she mentioned she wanted to come out for a visit I was thrilled.  Quickly I realized that we had never had a sleep over with just her and I! We have always been in groups and with other people and so I was even more excited for the one on one time.

AJ was here for the second to last week of treatment and so she was a huge help driving me to my appointments and helping to get to the kids to activities.  We enjoyed a nice stroll by the Elliot bay with an orange peel latte, amazing food at Revel, we tasted chocolate at Theo and of course had Molly Moon's ice cream. We took

A little drive on her last day to Bellingham to see a water and mountain view. It turned out to be cloudy and rainy there but the drive was beautiful. 

The cool steps in Le chat noir in Bellingham. 

It was an awesome and low key week and I'm

So grateful for the friendship and the help!

Neighbor!!!!!

My good friend Lisa from my neighborhood in Downingtown was a huge calm in the storm for me over the past few months.  She's a nurse practitioner at Riddle Hospital and when everything happened in December she was honest with me about the long road ahead.  She is a super calm and even person and a low maintenance, chill person who is so joyful to be around.  We have always shared many similar interests in food, music, culture and more.  When we were deciding treatment options Lisa read the medical journals for me and helped me to decide which was the best course for me.  As with all of my visitors we had no idea what shape I would be in upon their arrival.  Having Lisa here made me feel a little more adventurous and so I'm excited we got to do so many fun things.  

Lisa arrived Sunday evening and we all stayed up way too late chatting.  Monday morning, Lisa and I started out in the Capitol Hill neighborhood of Seattle, which I am not that familiar with.  We walked around Volunteer park with an iced coffee in hand, just catching up and enjoying the beautiful scenery.  

We grabbed an awesome lunch at a Mexican restaurant and then headed to get the kids.  

We planned ahead of time that we were going to head to Portland for a day because I was itching to get out of the house and I haven't left Seattle in a very long time.  Lisa made a hotel reservation and drove us south to Portland Monday after dinner.

We had a fabulous French meal in a very portland-esqe restaurant called Little Bird and called it a night.

On Tuesday we got up bright and early to check out the famous Voodoo Donuts.  The place was a little on the wild side and the choices were overwhelming! 

I chose chocolate peanut butter and Lisa chose maple cinnamon with sprinkles.

We then headed to Powell's books which is a famous bookstore that has it's own interior map.  We spent time perusing the shelves and buying some goodies before moving on.  

We really didn't know where we were or what we were doing and so we just kept walking!  We walked the water front and then up to the Nob Hill shopping area.  We went in and out of shops and then had a great lunch at a BBQ place. 

We tried to catch a bus to the Japanese gardens but we failed miserably at the public transit and ended up walking across a major bridge to find out way back to our hotel.  It was all fun and full of laughter.  We decided instead to drive to the gardens and none of the roses were in bloom and the Japanese gardens were pricey.  It was still all really pretty and had a nice view!!!  

We saw a lot of Portland on foot and we really did feel like we had a good taste of Portland culture in our very short visit.  

We headed back to Seattle and got settled back in late Tuesday.

Wednesday we headed to Seward Park to walk through the old growth forests and to see Lake Washington.  We picked up a salad at Trader Joes (that the geese almost took from us) and enjoyed a nice walk through the Pacific Northwest Forest.

Lisa helped Maeve to read a book with her toes.

Maeve was showing Lisa her Yoga moves and Lisa was showing Maeve how to start fast on a sprint.

Wednesday was Lisa's birthday and so we celebrated with a birthday meal and last dinner at The Walrus and The Carpenter.

We made a quick stop at Golden Gardens park to share our beautiful sun set over the mountains with her before she left!

5 steps forward, then rest

I'm pretty determined to resume some sort of normal.  I have no idea what that is anymore, but I want to find it.  This has been the beginning of my first week without meals and without visitors.  It's my first week where I'll have to do absolutely everything by myself, but it is also the first week I GET to do everything by myself.  I'm thrilled to make dinners and pack lunches and clean up the millions of things that have been left undone.  It's also combined with a lot of chaos that is our preparation for moving across the street.  We are unpacking lots of boxes that we haven't touched since we moved here, trying to decide what we actually need (if you don't use something for 9 months, do you need it?).  We have been working diligently on the new house.  Paul refinished the hardwood floors on the first floor and they look absolutely stunning.  We were told the floors couldn't be saved because they were scratched so heavily by dogs but a $40 rental buffer and some polyurethane and I am amazed by how beautiful they are. 

Paul finished the first floor bathroom and is busy installing pergo flooring in the basement.  I painted the upstairs flooring with an oil based floor paint (those floors were very old and damaged sub floor) and I love it.  I've been working on painting the walls and prepping as much as I can.  I'm very excited to move across the street because it is double the space we are living in now, but I know it is going to be the beginning of a long process of putting things away and reorganizing.  

Today I walked to the store and to the drug store and I was happy to be out and about.  I do believe that every day I feel a little better, however I have very strong and intense waves of exhaustion.  I can be in the middle of something and a wall hits me and I have to lay down.  Sometimes I just need twenty minutes or so and other times I'll sleep for a few hours.  I never really know when the fatigue will win, but usually once a day I need to rest.  I'm fine with this process and I'm grateful that the kids play quietly when I need to lay down or that Paul is around to allow me the time and space to rest.  

Unfortunately it also gives me excess time to think.  I was lamenting that I have accomplished nothing this year.  It's been 5 months and I haven't done anything.  That's a long time to think that your life has pretty much been dormant and it can be a very overwhelming thought.  I was talking with a friend about this and she pushed back against my dreariness and said.. no.. you fought and you survived and you kept going.  You can celebrate these five months and that you are here walking your kids to school and having this conversation.  She was right.  

So, though we didn't do anything super special and I took a very long nap, mother's day was extra meaningful to me this year.  I was so grateful to be my kids' mom and grateful to spend the day with them.  Maeve made me a beautiful water color painting and Noah made me a stained glass tissue paper art piece for the window.  Our rose bushes are in full bloom and so Noah lined the side walk with rose petals for me and put roses next to my pillow while I slept.  Paul bought me flowers and the perfect card and brought me my favorite ice cream.   Paul took the kids to a park in the afternoon and I was bummed to miss out. I feel the tug of war so strongly, as if two forces have each arm... one side is yanking me listing the shortcomings and the losses while the other arm being pulled to recenter and balance me, bombarding me with blessings and gratitude.  As with every moment, I am reminded that my hurdles are no greater or less than any other persons' but how I respond and how I live is what will make a difference.  

The sermon yesterday was from a verse in James I am not overly familiar with:

James 1:23-25 NIV

23 Anyone who listens to the word but does not do what it says is like someone who looks at his face in a mirror24 and, after looking at himself, goes away and immediately forgets what he looks like. 25 But whoever looks intently into the perfect law that gives freedom, and continues in it—not forgetting what they have heard, but doing it—they will be blessed in what they do.

He talked about how if we look in the mirror, see the things we know need to change and don't do anything then we are saying no to the gospel.  I know which voice I need to listen to and which direction I need to walk and yet sometimes it is so difficult.