I woke up giddy today, almost like Christmas morning. It's my last day of treatment. We are all dancing around the house singing and laughing today. Paul is taking off work. I have never felt such a release from bondage before. And my chains aren't that bad... I am keeping the deep pains of the world in my heart today... Nepal, Baltimore... it's all mixed together with news of a new baby and a new friend's special birthday. All of life, all messy and beautiful and difficult.
Maeve's devotion this morning was about blessings and it said I dare you to try to count all of the blessings God has given you... I bet you can't count that high! Maeve tried and quickly gave up and with a big big smile shouted THERE ARE TOO MANY!!!
Wednesday, April 29, 2015
Hope
A few months ago my friend Olivia shared this message about hope with me. I never got around to listening to it until a few days ago because I wanted something to accompany me while I was painting. So many of you came to my thoughts while I listened. How often we throw around the word hope in a trite and meaningless way... I hope you feel better, I hope things turn around for you, I hope you have a good day, but there is a lot of depth missing in our polite comments. For me this summed up a whole lot of my feelings... How my hope is not based in any way on my health. How my joy is not dependent on the circumstances of today. Hope is not fluffy and it is not light. If you have a few minutes it will shape your day. If not, tuck it away for when you need it like I did.
Monday, April 27, 2015
Eyes to see
If you know me, you know I'm not one to sit still. I've never really had just one iron in the fire and even when life is not overcomplicated, I enjoy activity and flurry and energy... so much.
This has been such a humbling time for me to let so much of that go.
I have marveled every day at the privilege that health is. Every time I grasp the cup with my left hand incompletely, ever time I walk into that door way, every time I feel exhaustion creep over me, every time a surge of pain rises to the spot of radiation, I am reminded that these moments inhibit my ability to live as I lived before. Many of these things will subside or even disappear eventually and for that I am so grateful. But honestly, it keeps me grounded. I am reminded so often of a world full of people who are not patient, who are full of judgment, who do not walk in another's shoes or even want to. Paul's parking pass at work allows him to park in the garage so that he can run out and take me to radiation. His boss told him to park in a handicapped spot because there were no regular spots available. Every day he gets dirty looks for getting in and out of his car. He doesn't have a choice. I want to wear a sign sometimes that says I can't see well in my left eye so that when I bump into people they don't think I'm careless or harried, but that I really didn't see them.
As I watch documentary after documentary about science advancements and possible treatments I get a little sick to my stomach thinking about those who have gone through so many rounds and so many years of treatment. I can't imagine doing this again and again and again.
One thing I realized with my last few guests and even feedback from friends here is that I don't seem bad from the outside which is actually comforting. I live and act and talk and laugh exactly as I did before, but my inside reality both emotionally and physically is very different. The even harder thing to explain is that it really isn't that bad, but it is very far from "normal." I am so grateful every single day for my abilities and my strength and stamina that allow me to function as a wife and a mother in a very normal way, but my thoughts very rarely stray from the realities of my limitations and the landscape of the next years. It's kind of like a fully grateful and fully overwhelmed mix which actually seems to be working pretty well.
It keeps me centered and focused on others and their needs, abilities and limitations. It keeps me honest to build and draw upon God's grace and mercy. It keeps me full of humility to remind myself that I need others and I need those that God has put in my path, even if I don't always want the help.
I dream about returning to ministry. I look for jobs. I look at coursework. I imagine a place where I can use my talents and abilities and be part of a collegial community again and then I am so quick to just hide under the blankets and be overwhelmed by my reality.
And so, as always, I take great refuge in God's perfect timing. I'm not in any rush and even if I wanted to be I can't go anywhere! And so I keep learning and growing closer to God, knowing that I can keep trusting my eyes won't always be clouded with this fog that I'm living in but they will grow closer to the eyes of Jesus who sees all of the pain and the hurt and the struggle in the world and sees each person as beloved and beautiful and whole.
Psalm 37 says "Be still before the Lord and wait patiently for him." I'm trying!
This has been such a humbling time for me to let so much of that go.
I have marveled every day at the privilege that health is. Every time I grasp the cup with my left hand incompletely, ever time I walk into that door way, every time I feel exhaustion creep over me, every time a surge of pain rises to the spot of radiation, I am reminded that these moments inhibit my ability to live as I lived before. Many of these things will subside or even disappear eventually and for that I am so grateful. But honestly, it keeps me grounded. I am reminded so often of a world full of people who are not patient, who are full of judgment, who do not walk in another's shoes or even want to. Paul's parking pass at work allows him to park in the garage so that he can run out and take me to radiation. His boss told him to park in a handicapped spot because there were no regular spots available. Every day he gets dirty looks for getting in and out of his car. He doesn't have a choice. I want to wear a sign sometimes that says I can't see well in my left eye so that when I bump into people they don't think I'm careless or harried, but that I really didn't see them.
As I watch documentary after documentary about science advancements and possible treatments I get a little sick to my stomach thinking about those who have gone through so many rounds and so many years of treatment. I can't imagine doing this again and again and again.
One thing I realized with my last few guests and even feedback from friends here is that I don't seem bad from the outside which is actually comforting. I live and act and talk and laugh exactly as I did before, but my inside reality both emotionally and physically is very different. The even harder thing to explain is that it really isn't that bad, but it is very far from "normal." I am so grateful every single day for my abilities and my strength and stamina that allow me to function as a wife and a mother in a very normal way, but my thoughts very rarely stray from the realities of my limitations and the landscape of the next years. It's kind of like a fully grateful and fully overwhelmed mix which actually seems to be working pretty well.
It keeps me centered and focused on others and their needs, abilities and limitations. It keeps me honest to build and draw upon God's grace and mercy. It keeps me full of humility to remind myself that I need others and I need those that God has put in my path, even if I don't always want the help.
I dream about returning to ministry. I look for jobs. I look at coursework. I imagine a place where I can use my talents and abilities and be part of a collegial community again and then I am so quick to just hide under the blankets and be overwhelmed by my reality.
And so, as always, I take great refuge in God's perfect timing. I'm not in any rush and even if I wanted to be I can't go anywhere! And so I keep learning and growing closer to God, knowing that I can keep trusting my eyes won't always be clouded with this fog that I'm living in but they will grow closer to the eyes of Jesus who sees all of the pain and the hurt and the struggle in the world and sees each person as beloved and beautiful and whole.
Psalm 37 says "Be still before the Lord and wait patiently for him." I'm trying!
Noah's 9th Birthday
We started planning Noah's 9th birthday a while ago but the options for parties around here are quite slim compared to PA. In the city there isn't a lot of space for large "party" areas" and so you have to drive to the suburbs. We've been to a couple of painting parties and moon bounce parties, but it is definitely a lot different here!
Of course, I can't say no to a party!
We settled on a trampoline park about 25 minutes away and invited a bunch of our friends and neighbors.
I was organized enough to get invitations ordered well in advance and to think through goodie bags early on to do by mail order. Despite all of that on the morning of the party I was so frustrated because i couldn't hop in the car to get the little things I was missing and I didn't have the energy to do all of the little surprises I usually do.
Of course Paul came to the rescue and was amazing. On Saturday morning we got ready early, hopped in the car and made all of the stops I needed to make me feel better. We weren't planning on making a cake because of time and energy and we tried to go to several grocery stores to buy one but apparently that's not as easy as it sounds! Most of the city stores don't have a bakery and when we did find cakes they were vanilla and Noah wanted chocolate. We just ended up going with vanilla and there were no complaints. Paul cut some card stock and got out some embroidery thread and made a trampoline as a cake topper. Seriously, this guy amazes me every single day.
We gathered all the kids at the trampoline park and they got to bounce in three different areas. The first one was about 30 mini trampolines hooked together. The kids could bounce between them and bounce on the walls of this area. The second area was similar but smaller and was staffed by someone from the park who organized and carried out dodge ball games on the trampolines. The third area was a series of trampolines lined up that led to a giant pit filled with foam bricks.
Paul and another dad also bounced with the kids and Paul and Noah were both doing complete flips into the foam pit.
We gathered for pizza and to sing happy birthday and everyone was on their way. It was an easy and simple party for which I was very grateful.
When we got home Noah played with his friends for a while and we let him unwind. As I expected I was so exhausted from the day and so I went in to bed right after dinner. Paul got to work decorating the house so that when Noah woke up on his actual birthday it would be fun. He filled his bed with balloons and made a streamer maze so it was nearly impossible for him to get out of his room. He wrapped and hid all of the presents, hung up banners and made it just how I would have wanted it to be. Paul and Maeve got up and made Noah a special breakfast and then we headed to church. It was our 4th Sunday which means that the church focuses on mission projects. We've been collecting coins for the Ben Towne foundation which is a childhood cancer research foundation here in Seattle. The kids got hot chocolate from the coffee bar and then started rolling coins. It was funny to me because they have never done this before and it is kind of an old thing I remember from being a child.... long before coin star. The church sang Happy Birthday to Noah and he worked really hard.
I was so proud of him for his willingness to serve and to help. He didn't have a single moment of complaint and hew as so happy to help.
When we got home from church we watched some videos about the foundation and the kids had questions about how the money we collected and rolled helps other kids.
This video showed the kids how their coins are beefing up those fighter guys.
It's all pretty overwhelming and wonderful at the same time. Our friend in PA lost her daughter to nueuroblastoma and to think that my kids and my church are doing something in Seattle to stop this is so moving for me.
After all of this we had some lunch and started to open presents. Of course Noah has absolutely everything he could ever want and so it wasn't easy to come up with gift ideas! He also never asks for anything and overtime we asked him what he would like for his birthday he couldn't think of anything. There is one lego set that he has been saving up for for months and so he got contributions toward that from family which he was very excited about.
We got him a head lamp for camping and a tree hammock that he can put up anywhere and folds into the size of a small chip bag
We also got him something called a slack line. We saw this camping last year and really wanted to get one for the kids. Basically it's two wide strips of very strong canvas and a mechanism to connect them to any tree or pole. The goal is to walk from one side to the other either holding on to the top rope for balance or not holding on at all. We thought this was the perfect gift for our climbing monkey. He had a blast and all of the kids in the neighborhood came over to give it a try.
We had originally thought we would go for a picnic dinner but it was a little chilly and so we let Noah pick the dinner spot. We ended up at the Melting Pot for fondue and the kids LOVED dipping their food into the cheese and chocolate!
It was really a great birthday weekend!
Sunday, April 26, 2015
Radiation Oncologist -- Last Visit
I have been meeting with my radiation oncologist every Friday. His name is Dr. Rockhill and I have found him to be absolutely fantastic. Because my treatment ends on a Wednesday I saw him for the last time during radiation last Friday.
He assured me again that I am doing very well and I am right on par with where I should be in my energy, symptoms, and responses. He feels that the steroids have been very helpful for me and he will begin to slowly wean me off of them next week.
He reminded me again that the symptoms can linger and there is no expected end date for fatigue. We also talked at great length about how a person's ability and willingness to live a "normal" life directly impacts how well a person heals and ultimately survives. One of the number one factors of longevity is how "normal" someone feels. This is motivation for me to find ways to get out of the house and to make and effort to meet with friends and to find new ways to be active. Of course my new normal will be different, but I'm really looking forward to some new set of routines.
He shared that my oncology team met and discussed my tumor and they were split on the next step of treatment. No matter what I will have a month off and I will meet with my team on May 27th. It seems like the next course will be to stay with the original plan and continue chemo on 5 out of 28 day cycles. We were told in the beginning that the best thing to do is to be aggressive with our treatment and so if that's what the doctor's recommend that's what we will do. I haven't had any side effects at all from the chemo that I can identify. The 5 out of 28 cycles are a higher dose than what I have been on, but I can hope that if that is the round I end up on the side effects will be minimal.
I asked a lot of questions and tried to push hard for information. I wanted to know what happens next... after chemo. Do I stay in a cycle of chemo over and over again? Radiation isn't an option again for a little while if there is regrowth. The doctor said at this point in time I don't qualify for any of the other ongoing studies that they have and he reminded me again and again that I have the best possible well behaved tumor I can have. I have the genetic make up that is favorable, I'm young, in good health, and I had a full resection. Some of the other options if there is regrowth are vaccine therapy or another surgery.
He also reminded me again that the MRI I will have on May 27th will likely look pretty ugly. My brain is very swollen from radiation and is agitated. He said that very very often there will be areas that appear to look very much like new tumor growth but are not. The swelling causes areas to show up on the MRI that are called pseudo tumor growth. This is why they take this post radiation MRI and use it as a baseline to see how the MRI's from here on out compare. I'll have another MRI one month after the one on May 27th to do the first comparison and if there is pseudo growth it should subside by the June MRI. After that point if the pseudo growth dissipates then I'll have MRI's every three months.
I pressed him on whether the prognosis has changed at all due to the genetic markers or other factors and he felt that the case is still the same as it was at the first post surgery visit with the nuerosurgeon. He assured me again that I have a very well behaved tumor and I should feel really good about all of the factors involved.
He assured me again that I am doing very well and I am right on par with where I should be in my energy, symptoms, and responses. He feels that the steroids have been very helpful for me and he will begin to slowly wean me off of them next week.
He reminded me again that the symptoms can linger and there is no expected end date for fatigue. We also talked at great length about how a person's ability and willingness to live a "normal" life directly impacts how well a person heals and ultimately survives. One of the number one factors of longevity is how "normal" someone feels. This is motivation for me to find ways to get out of the house and to make and effort to meet with friends and to find new ways to be active. Of course my new normal will be different, but I'm really looking forward to some new set of routines.
He shared that my oncology team met and discussed my tumor and they were split on the next step of treatment. No matter what I will have a month off and I will meet with my team on May 27th. It seems like the next course will be to stay with the original plan and continue chemo on 5 out of 28 day cycles. We were told in the beginning that the best thing to do is to be aggressive with our treatment and so if that's what the doctor's recommend that's what we will do. I haven't had any side effects at all from the chemo that I can identify. The 5 out of 28 cycles are a higher dose than what I have been on, but I can hope that if that is the round I end up on the side effects will be minimal.
I asked a lot of questions and tried to push hard for information. I wanted to know what happens next... after chemo. Do I stay in a cycle of chemo over and over again? Radiation isn't an option again for a little while if there is regrowth. The doctor said at this point in time I don't qualify for any of the other ongoing studies that they have and he reminded me again and again that I have the best possible well behaved tumor I can have. I have the genetic make up that is favorable, I'm young, in good health, and I had a full resection. Some of the other options if there is regrowth are vaccine therapy or another surgery.
He also reminded me again that the MRI I will have on May 27th will likely look pretty ugly. My brain is very swollen from radiation and is agitated. He said that very very often there will be areas that appear to look very much like new tumor growth but are not. The swelling causes areas to show up on the MRI that are called pseudo tumor growth. This is why they take this post radiation MRI and use it as a baseline to see how the MRI's from here on out compare. I'll have another MRI one month after the one on May 27th to do the first comparison and if there is pseudo growth it should subside by the June MRI. After that point if the pseudo growth dissipates then I'll have MRI's every three months.
I pressed him on whether the prognosis has changed at all due to the genetic markers or other factors and he felt that the case is still the same as it was at the first post surgery visit with the nuerosurgeon. He assured me again that I have a very well behaved tumor and I should feel really good about all of the factors involved.
The final stretch of round 1
I have three more days in my first round of treatment. Hallelujah.
It is a difficult experience and state to explain. I am incredibly tired. I went to bed at 7pm last night and slept until almost 8 this morning. I took a 2 hour nap this afternoon and I'm ready for bed now at 9. I feel like I'm walking around in a haze which is a partial mix of the vision loss and a partial mix of the brain swelling. Life just feels foggy.
The radiation is dehydrating and so I'm trying to drink more water but it is very difficult to wear my contacts because my eyes are so dry, my mouth is dry, my skin is dry.
My hair is still coming out in small sections. For the most part I think that is over with, but every time I pull my hair tie out a pile of hair is with it. I really don't believe it is that noticeable, but I won't be able to wear my hair down for a very very very long time, if ever and so when I think of things in those terms it is overwhelming.
When I am awake and especially in the morning I feel very alert and cheerful and very much like myself. I get through most of the days feeling great. But everyday, mostly in the 4-6pm window I hit a wall and I need to lay down. I can see the sunshine outside and for the life of me I can't get myself to go for a walk or to sit outside. We drove by Green Lake last weekend and people were outside playing all sorts of frisbee and volleyball and I knew that there was no way I could muster up the energy to even sit out on a blanket.
There is no way to know who long the fatigue will last. From what I've heard and been told it will likely last a few more weeks and then start to get a little better before I go through the "tank" stage where my body shuts down for a week or so. I'm hoping May will start off with a little more energy and then mid May I'll feel the radiation effects and then I'll be back on my way, ready for the summer. That's my plan, we'll see how my body responds!
I realized this week that I haven't had any sort of routine in my life since December 15th. 4 months without any order or structure, without being able to plan anything or organize anything, and it is really starting to wear on me. I know that all of these thoughts and feelings, physical and mental, are cumulative and all jumbled together and I'm okay with that. I'm just at a place as well where I want to document and note how I feel, just for journaling's sake and in case anyone else is going through something similar, looking for common ground.
So, three more times of the mask, three more days of chemo pills, three more trips to the proton center.
It is a difficult experience and state to explain. I am incredibly tired. I went to bed at 7pm last night and slept until almost 8 this morning. I took a 2 hour nap this afternoon and I'm ready for bed now at 9. I feel like I'm walking around in a haze which is a partial mix of the vision loss and a partial mix of the brain swelling. Life just feels foggy.
The radiation is dehydrating and so I'm trying to drink more water but it is very difficult to wear my contacts because my eyes are so dry, my mouth is dry, my skin is dry.
My hair is still coming out in small sections. For the most part I think that is over with, but every time I pull my hair tie out a pile of hair is with it. I really don't believe it is that noticeable, but I won't be able to wear my hair down for a very very very long time, if ever and so when I think of things in those terms it is overwhelming.
When I am awake and especially in the morning I feel very alert and cheerful and very much like myself. I get through most of the days feeling great. But everyday, mostly in the 4-6pm window I hit a wall and I need to lay down. I can see the sunshine outside and for the life of me I can't get myself to go for a walk or to sit outside. We drove by Green Lake last weekend and people were outside playing all sorts of frisbee and volleyball and I knew that there was no way I could muster up the energy to even sit out on a blanket.
There is no way to know who long the fatigue will last. From what I've heard and been told it will likely last a few more weeks and then start to get a little better before I go through the "tank" stage where my body shuts down for a week or so. I'm hoping May will start off with a little more energy and then mid May I'll feel the radiation effects and then I'll be back on my way, ready for the summer. That's my plan, we'll see how my body responds!
I realized this week that I haven't had any sort of routine in my life since December 15th. 4 months without any order or structure, without being able to plan anything or organize anything, and it is really starting to wear on me. I know that all of these thoughts and feelings, physical and mental, are cumulative and all jumbled together and I'm okay with that. I'm just at a place as well where I want to document and note how I feel, just for journaling's sake and in case anyone else is going through something similar, looking for common ground.
So, three more times of the mask, three more days of chemo pills, three more trips to the proton center.
Friday, April 24, 2015
The monk view
I made Paul take a picture of my bald head. I wanted to keep it to remember and see what might grow back. There are weird spots of growth. It's pretty gross!
Thursday, April 16, 2015
12 days to go
The days have been getting harder and harder. I'm not doing much more than getting out of bed and getting to the doctor. My vision seems to be a little better, but the steroids are keeping me up at night so I feel even more tired during the day. My appointments have changed again which is incredibly challenging. This week they have been at noon which means Paul leaves at 9 and comes home at 11 to take me to the doctor. Basically I shower, go to the doctor, come home and then rest. Next week my appointments will be at 10 AM which might be a little better because then they won't be right in the middle of the day. It's also a lot harder this week because the kids are off of school and so I feel a lot of pressure to do things with them and to enjoy my time with them.
My head is so sore and so laying down or sitting back hurts. I really need to start covering my head when I am out because it is just raw skin right now, but I just feel so uncomfortable in hats. I have my hair pulled over the bald spots, but I'm sure it is still getting exposure. I'll work on that.
Today my nurse caught me in the hallway and I asked when the last day of treatment is and she checked in the computer. They have it listed as April 29th which is later than I thought it would be, but I'm sure I don't have any control over that. I meet with my neuro-oncologist and have my follow up MRI on May 27th. It will be at that appointment that we will find out if I will stay on the chemo or not, but between April 29th and May 27th I'll be off of all of the treatments.
As we were told in the beginning we will expect that I will begin to feel more "normal" after radiation ends and then to expect a big dip 2-3 weeks after it is over. This is a normal response and a coping and healing mechanism of the body to rest and repair.
This past Monday I started a new devotional series about Esther and it reminded me of a weekend retreat I lead for Oxford Pres a few years ago. The theme of the retreat was "for such a time as this" which is a quote from Esther about how she was perfectly prepared by God to do amazing things. I remember so clearly telling the women that whatever moment they were in that God had prepared them for "such a time as this." I guess in many ways I do feel prepared because I have so much love and joy in my heart and I don't feel alone or in despair. However, I don't think there really is any way to be prepared or to feel equipped to go through this.
Perhaps also I can be reminded of those of you who have been angels to me, encouraging me on this journey, sharing stories of your own rounds of treatment, your own struggles with hair loss, your own encounters with radiation and chemo. Maybe the preparation I have is just the blessing of knowing and being known by so many people who are ready and willing to lift me up.
My head is so sore and so laying down or sitting back hurts. I really need to start covering my head when I am out because it is just raw skin right now, but I just feel so uncomfortable in hats. I have my hair pulled over the bald spots, but I'm sure it is still getting exposure. I'll work on that.
Today my nurse caught me in the hallway and I asked when the last day of treatment is and she checked in the computer. They have it listed as April 29th which is later than I thought it would be, but I'm sure I don't have any control over that. I meet with my neuro-oncologist and have my follow up MRI on May 27th. It will be at that appointment that we will find out if I will stay on the chemo or not, but between April 29th and May 27th I'll be off of all of the treatments.
As we were told in the beginning we will expect that I will begin to feel more "normal" after radiation ends and then to expect a big dip 2-3 weeks after it is over. This is a normal response and a coping and healing mechanism of the body to rest and repair.
This past Monday I started a new devotional series about Esther and it reminded me of a weekend retreat I lead for Oxford Pres a few years ago. The theme of the retreat was "for such a time as this" which is a quote from Esther about how she was perfectly prepared by God to do amazing things. I remember so clearly telling the women that whatever moment they were in that God had prepared them for "such a time as this." I guess in many ways I do feel prepared because I have so much love and joy in my heart and I don't feel alone or in despair. However, I don't think there really is any way to be prepared or to feel equipped to go through this.
Perhaps also I can be reminded of those of you who have been angels to me, encouraging me on this journey, sharing stories of your own rounds of treatment, your own struggles with hair loss, your own encounters with radiation and chemo. Maybe the preparation I have is just the blessing of knowing and being known by so many people who are ready and willing to lift me up.
Tuesday, April 14, 2015
Easter visit with mom and dad!
I was very excited to have my mom
and dad come to visit for Easter!
They arrived Thursday evening and got settled in. Friday during the day it was overcast and we headed to Pike Place market. We got some chowder and crab roll and then it started to really rain! Mom
and I looked through some shops and we walked through the vendors but it was pretty damp and cold! We took the bus home and then they got to come with me to my treatment to see what it looks like and to meet my nurse and radiation oncologist.
After my appointments we went to Ivars salmon house and it turned in to a clear evening with a beautiful view of the city from our table.
Saturday we got up and went downtown to do a harbor cruise of Seattle. We got to learn a lot about the city including a view of a hotel where the Beatles used to fish from! We watched porpoises swimming in the bay from the dock and just enjoyed the view. After the cruise I was very tired so Paul took me home while Noah and Maeve and my parents got to go to the Seattle Aquarium. We ate at home and relaxed Saturday evening.
Sunday morning we got up for a small egg hunt and then headed to church. It was a beautiful sunny day. Our friends Doug and Lisa welcomed us into their home and made a great meal. The kids played and played.
Monday the kids went to school and my radiation was moved to noon. We explored our neighborhood a little. My dad went with Noah and Paul to Boy Scouts Monday evening at Seward Park. While dad was sitting by Lake Washington, Mt Rainer came out and dad got to see the mountain in orange hues at sunset.
Noah on Easter morning (these pics are just from my phone...I haven't downloaded from my camera yet)
Maeve and her new sewing kit working with Daddy.
Morel mushrooms at the market. $40 a lb ! This picture is for my grandfather who loves Morels.
The view behind us on the boat.
Showing mom the city view at night.
Tasting sea beans at the market.
We convinced mom mom to play Just Dance.
Dad enjoying the glass exhibit b
Tuesday we went to the Chiluly glass museum and enjoyed the amazing creations of this world renowned local artist. There was a glass blowing demonstration we got to see on a school trip too.
Wednesday we finally headed up the space needle. We were trying to wait for a clear shot of Mt Rainierfor mom but the clouds kept hovering over the mountains. The view was still great but no Rainier! We ran around for some gifts and grabbed a nice dinner in Queen Anne. My treatment was moved to 7pm that night but it all worked out okay. We stopped by the Fremont troll on the way back home to get a quick shot!
We sat and talked on their last night but it all went too fast. Before I knew it it was time to say goodbye. They had a 5 am flight so Paul took them to the airport early. Their flight was delayed and so finally mom got to see the mountain from the airport!!!
They got home safe and sound to Philadelphia. We all enjoyed our time together even though it was too short. Next time we will venture more into the mountains!
Getting to week 5 -- fatigue
One of the symptoms my doctor kept warning me about was fatigue. He said it could come in many forms and for some people it was worse than others. I was having a difficult time understanding what fatigue is and defining it. I didn't feel overly tired most days and I was able to get through most of my daily routines just fine. But as the weeks went on, I noticed that my vision loss that was so prominent after my surgery had returned. Once again I was walking into doorways and knocking things over. I started to feel like I was walking around in a fog, unable to fully focus or concentrate on anything. I had bursts of pain behind my right ear which is one of my radiation spots. I started to lose my ability to focus on words on a paper, straining very hard and blinking incessantly to be able to see clearly. I felt very dizzy as if I was on a cruise ship deck and one night I was sitting on my bed and held on for dear life because I was sure I was falling down a flight of stairs. It all came about slowly and incrementally and I was able to work through most of it. But last Friday at my weekly follow up when the nurse asked her usual questions I collapsed into a puddle. I lost most of my hair during that week, the other symptoms seemed to be doubling and I was just exhausted from going to the doctor every day, sometimes several times a day. When the doctor finally came in he suggested that I go on a low dose steroid. The radiation causes brain swelling and many of my symptoms were likely a result of this swelling. It felt like he handed me a million dollars. He said it could cause stomach upset or keep me from sleeping at night but it would likely reduce some swelling and get me through the rest of the treatment a little easier. I was so grateful. I am only on day two of the steroid but I already feel a little bit better and I have a little more clarity.
I'm sure you'll shake your head at me, but I keep wrestling with this feeling that I have no reason to feel down or sad because in the grand scheme of things this really isn't that bad. I'm not vomiting, I'm not listless, I'm not blind, I wake up every morning to snuggles and love and I am surrounded by people who are caring for me and praying for me.
I started to think a lot about how I was "ranking" my situation in comparison to the struggles in life that other people go through. I think it's a pretty common practice to rank yourself based on others in comparison to income, intelligence, appearance, suffering, joy, etc. I kept ranking my pain as less than other people's pain because I'm still functioning at a very high level and I'm certain others are going through so much worse. It took me a few days of mulling this around to be at peace with the fact that this is awful and it's okay to say that. I don't have to be laying on the ground dying to be in pain and that pain comes in various forms and is experienced in various ways. Someone else going through my exact set of symptoms and treatment might react totally differently and my feelings and reactions are unique to my life and my circumstances. I remembered the woman in the New Testament who was to be stoned for adultery and how Jesus came in and asked the one without sin to throw the first stone. We aren't ranked in God's eyes, but just loved for who we are.
......
I'm sure you'll shake your head at me, but I keep wrestling with this feeling that I have no reason to feel down or sad because in the grand scheme of things this really isn't that bad. I'm not vomiting, I'm not listless, I'm not blind, I wake up every morning to snuggles and love and I am surrounded by people who are caring for me and praying for me.
I started to think a lot about how I was "ranking" my situation in comparison to the struggles in life that other people go through. I think it's a pretty common practice to rank yourself based on others in comparison to income, intelligence, appearance, suffering, joy, etc. I kept ranking my pain as less than other people's pain because I'm still functioning at a very high level and I'm certain others are going through so much worse. It took me a few days of mulling this around to be at peace with the fact that this is awful and it's okay to say that. I don't have to be laying on the ground dying to be in pain and that pain comes in various forms and is experienced in various ways. Someone else going through my exact set of symptoms and treatment might react totally differently and my feelings and reactions are unique to my life and my circumstances. I remembered the woman in the New Testament who was to be stoned for adultery and how Jesus came in and asked the one without sin to throw the first stone. We aren't ranked in God's eyes, but just loved for who we are.
......
We are all, equally, in need of grace and the wonderful news is that God’s grace is sufficient. It is enough for you, and enough for me, and enough for the person I mistakenly feel might be irredeemable. God does not say “get your life cleaned up and when you’ve got it all together, come on in.” Instead He says in Matthew 11:28 “Come to me, all you who are weary and burdened, and I will give you rest.”
God is invitational. He asks for repentance, no question there, but He welcomes the seeking and accepts all who ask to be forgiven. Is there someone on the fringes of your community, of your church, who is weary and burdened? Could you be the person who demonstrates a little of what God’s invitational love looks like? Maybe it’s as simple as smiling and saying hello. Perhaps it is inviting them to sit with you in the service or chat afterwards or go for coffee. Maybe it is simply being able to say “I’m not here to judge.”
When we can see sin for what it really is we can see ourselves as we truly are – an equal community, guilty in a variety of ways but redeemed under one grace. All have sinned, but His grace is enough if we humble ourselves and ask. God doesn’t grade on a curve, thank Heaven for that!
Getting to Week 5 -- Hair loss
I know it's been a long while since I posted and though I haven't been able to respond very well I appreciate all of your emails, texts and notes asking how I am doing. I'm on day 2 of week 5 and somehow I hit a big dip in the road getting here. The doctors assure me it's normal and warned me that radiation and chemo together is a tough regiment.
At the end of week 2 I started noticing my hair coming out in piles of 10 or 20 hairs, nothing alarming, but clearly something very different than regular brushing. I started avoiding combing my hair and I was very hesitant in the shower to wash my hair well, hoping to prolong the process. Every day more and more hair would come out in clumps and the clumps would get larger and larger until my trashcans were just full of hair. My head has become very sore and raw and it hurts to touch it on the right side, let alone lay on it. Any accidental bump can send me to tears quickly. Because my hair is long and I can't see the back of my head easily I couldn't clearly see what was happening in the mirror, only in the piles in my hands. I am almost always around the kids and so I sort of kept it all in hiding to spare them from the process and to shield them from my grief. As the days went on my hair became matted and took on the appearance of dread locks. Paul would sit carefully and help me to separate the clumps to brush them out, but as soon as we would finish it would all clump up again.
One day right before Easter I was alone on my bed trying to comb my hair, making piles on my pillow when I figured out that the dead hair falling out was getting stuck in the living hair that was still growing and that is why it was matting. It was a really powerful moment for me because I haven't been feeling much more than loss lately and I realized that what is dead just needs to be dead. I was holding on so tenderly to my hair because I didn't want to admit that it was going to come out and I was giving it so much attention and emotion. I know in my head that it is vain and it is superficial and it is not a marker of my identity or my life, but it had been consuming me. I was so struck but how much of that which is living and growing and healthy is caught up in things that are dead, that we hold on to, things that we grieve or long for that are not full of life. And the dead things strangle the living things and make a giant mess, often stealing our attention and our joy.
I wish I was one of those strong people who really didn't care about the hair loss part. I wish I was bold enough to walk around with half of my head bald but I'm just not. Of course it was all so meaningful to me at that moment in time, doubly so, because I kept imagining the women at the tomb so distraught over death, unable to accept that death doesn't win, unable to feel God moving and living because they were so caught in their grief.
As I was siting and talking to my neighbor after school she encouraged me to acknowledge that there is a loss and that with loss there is sadness that surrounds it. I do feel a loss, however silly and superficial it is and I'm still wrestling with that.
In my particular situation there is a great chance that my hair won't grow back. Because of the high dose of radiation I am receiving and because it is directly on my scalp many people in my situation experience permanent hair loss. If hair does grow back it will be in three to six months and so I'll just have to wait and see. The good news is that I am able to pull my hair back into a pony tail and a bun and if I am careful you can't see any of the bald part of my head. I'm hoping as the living hair continues to grow it will fill in around the dead spots and my hair will feel full again someday.
The kids, especially Noah, are a little scared of me when my hair is down, which hurts enormously, but they are fine when it is pulled back and so I am grateful that I have that option.
At the end of week 2 I started noticing my hair coming out in piles of 10 or 20 hairs, nothing alarming, but clearly something very different than regular brushing. I started avoiding combing my hair and I was very hesitant in the shower to wash my hair well, hoping to prolong the process. Every day more and more hair would come out in clumps and the clumps would get larger and larger until my trashcans were just full of hair. My head has become very sore and raw and it hurts to touch it on the right side, let alone lay on it. Any accidental bump can send me to tears quickly. Because my hair is long and I can't see the back of my head easily I couldn't clearly see what was happening in the mirror, only in the piles in my hands. I am almost always around the kids and so I sort of kept it all in hiding to spare them from the process and to shield them from my grief. As the days went on my hair became matted and took on the appearance of dread locks. Paul would sit carefully and help me to separate the clumps to brush them out, but as soon as we would finish it would all clump up again.
One day right before Easter I was alone on my bed trying to comb my hair, making piles on my pillow when I figured out that the dead hair falling out was getting stuck in the living hair that was still growing and that is why it was matting. It was a really powerful moment for me because I haven't been feeling much more than loss lately and I realized that what is dead just needs to be dead. I was holding on so tenderly to my hair because I didn't want to admit that it was going to come out and I was giving it so much attention and emotion. I know in my head that it is vain and it is superficial and it is not a marker of my identity or my life, but it had been consuming me. I was so struck but how much of that which is living and growing and healthy is caught up in things that are dead, that we hold on to, things that we grieve or long for that are not full of life. And the dead things strangle the living things and make a giant mess, often stealing our attention and our joy.
I wish I was one of those strong people who really didn't care about the hair loss part. I wish I was bold enough to walk around with half of my head bald but I'm just not. Of course it was all so meaningful to me at that moment in time, doubly so, because I kept imagining the women at the tomb so distraught over death, unable to accept that death doesn't win, unable to feel God moving and living because they were so caught in their grief.
As I was siting and talking to my neighbor after school she encouraged me to acknowledge that there is a loss and that with loss there is sadness that surrounds it. I do feel a loss, however silly and superficial it is and I'm still wrestling with that.
In my particular situation there is a great chance that my hair won't grow back. Because of the high dose of radiation I am receiving and because it is directly on my scalp many people in my situation experience permanent hair loss. If hair does grow back it will be in three to six months and so I'll just have to wait and see. The good news is that I am able to pull my hair back into a pony tail and a bun and if I am careful you can't see any of the bald part of my head. I'm hoping as the living hair continues to grow it will fill in around the dead spots and my hair will feel full again someday.
The kids, especially Noah, are a little scared of me when my hair is down, which hurts enormously, but they are fine when it is pulled back and so I am grateful that I have that option.
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