If you’re interested in how I got to this place, read on.
Excerpts from caring bridge
Ps. 46- “God is our refuge and strength, a very present help in trouble. Therefore we will not fear, though the earth should change and though the mountains slip into the heart of the sea…”
For me, this is becoming more real, God is more of a present help in my trouble.
I’m more thankful for my friends and family, I’m texting my siblings more, wishing we could have dinner every week together, I’m missing my dad more, and my mom.
Sometimes I’m sleeping more and sometimes I’m awake in the middle of the night more. (like tonight-I had a dream I died in a train crash and woke up at 2?????)
Journal entry by shea Gilbert — 2/25/2014Just wanted to quickly get something out to say that I had my follow up visit with my surgeon today. I’m apparently healing well and the good news is that the 2 removed lymph nodes were negative. Also, the tumor was 1.7 cm (down from just over 5 cm before chemo) and the margins were all clear. This wasn’t a complete pathologic response as we had hoped, but it was a great response to chemo.
Next up, radiation. I have a few appointments with the oncologist, radiation oncologist and the surgeon next week (oh, and a mamogram just for fun) and I can possibly start radiation in 2 weeks. We’ll see what the radiation oncologist says next monday.
I felt so well-loved last week as I went to surgery and as I’ve been recovering. My sister and brother-in-law, were here for a week. They just left this morning and I think we were all sad to see them go. Our families have been just what we’ve needed during this whole time. So thankful and blessed.
I’m tired. So…sleep well friends. We love you
Journal entry by shea Gilbert — 8/28/2014The dance with cancer continues long after treatment is finished. Today I had my 6 month follow up with my Oncologist. My labs came back fine, I had a bone scan last week that was fine and I look fine to her, so I’m breathing a sigh of relief for another 3 months at least.
I’m learning how to truly “live” in the aftermath of cancer, which felt traumatizing in a lot of ways.The temptation to worry, being anxious about everything, afraid of what the future may hold is very real and I fight it every day. One would think I would be always aware of the magnitude of little moments..the importance of every interaction with my kids and husband,that I would be living in the moment, thankful for each breath and each relationship given to me. Cancer is still in the forefront of my mind, and Eric’s too. It affects our work, our interactions with others, our commitments, our reactions to situations and decision making. It’s not everyone else’s first thought and that’s ok, but we just feel like we’re living in another universe sometimes-seperate from everyone else. What it doesn’t do is make me super human. Much to my disappointment, I still lose my patience, snap at my kids-and eric, get jealous when I want something someone else has, lose sight of the big picture….I wish I could see everything as it should be seen, all the time.
So now, how do I live one day at a time when calendars still get filled in -full-by the first week of school? When finances are a reality and kids get sick and need need need so much. The only thing I know is to wake up before the sun, even when I’m tired, and breath prayers of “help. Help me start again.” How i take comfort in Jesus’ words, “come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls”. It’s coming up on one year since I got the diagnosis. September 18th. My soul-my family’s souls-need rest. Thank you for standing with us. We are grateful.
Journal entry by shea Gilbert — 10/11/2015Well, here I am again, a year later, wishing I could say, I had my mammogram and checkup and things are looking awesome! But, I can’t.
A few months ago I was having some stomach pain and so my oncologist, decided to do a chest, abdomen and pelvis CT. It showed that my stomach was fine, but there were two tiny lesions on my lungs. They were too small to biopsy so we decided to wait 3 months and scan again. About a month ago, I had the chest CT and the lesions had grown. Now they are about 7mm on one lung and 8.5 mm on the other lung. About a week and a half ago, they did a PET scan and one of the lesions was “hot” and even though it was the smaller one, they decided to biopsy it. We were hoping it was some sort of infection. That was last tuesday, the 6th. On Friday we met with Dr. and found out that it is metastatic triple negative breast cancer. I’m still in disbelief. We cried and yelled right there in the exam room with Her. Well, I yelled, I don’t think Eric did. It’s kind of a blur.
>> As long as I have no progression I will stay on xeloda and be monitored often. I will begin this drug probably on the 19th and I’ll have a brain scan soon to make sure it isn’t in my brain. (please no)>> The only natural treatments she has seen helpful with triple negative (things she said she would do if she were me, though she doesn’t really have proof) are keeping my insulin Level low. (No sugar, alcohol and enough exercise) and possibly an alkaline diet. She had a friend who has lived for 8 years with brain cancer that is not spreading and she can only point to his alkaline diet as the difference in his treatment.
At this point, we are not in need of meals, as we are trying to figure out this whole alkaline diet thing.
Since they don’t think now in terms of a “cure”, but more like a disease to be managed, you can imagine we are crushed. And we are. I have moments when I forget and then my daughter says something about when she’s 18 and my other daughter is 16 and I’m undone again. We are begging for time. Time. Years. Many of them.
The kids are dealing with this news in their own ways. The girls are more inquisitive and we are trying to focus on what we know now, not what we imagine will be in the future. We say, “This time it is different. The cancer cells were almost all killed by the last chemo but maybe only one or two escaped. They have been hiding out and now they have resurfaced. Since the cancer is in a different place, it has to be treated differently. This new chemo will work in a similar way, but won’t make me feel as bad.”
Thank you for thinking of us, for your compassion and your prayer. Pray for peace, somehow, for all of us. Pray for kindness to be shown between siblings and for eric and I to be gentle with each other. We have been so far, but I know this is a long road, and we will be tired. Pray for wisdom for us to know how to use our time and resources. I had been working 3.5 days each week at our elementary school. I think I will cut back to 4 half-days each week for now. I’ll have appointments and also I need a couple of hours each day to regroup, buy groceries, clean my kitchen, sit still. This way, hopefully I’ll be a nicer mom than I’ve been the last 6 weeks since school has started. I know all our days are numbered. But the way I spend time with my family seems much more urgent now. I want to go away with each of the kids for a night, to take a short trip with Eric, to live each second intentionally.
Shea and Eric
today’s appointment after 3 months of Xeloda and a scan
Journal entry by shea Gilbert — 1/26/2016
Today we met with Dr. Marshall to discuss the results of my scan from last thursday. I have been taking Xeloda for 3 months now and the scans showed no new growth in my body. This is really really good news. If it hadn’t worked at all Dr. Marshall would have expected some new places to pop up. (liver, bone, etc) However, each lesion was about 1 mm larger than in the October scan. So, it isn’t working well enough to shrink the tumors. Not good news. But they could have been much bigger so she said, “this isn’t the end of the world. I don’t want you to go home and freak out.”
I’ve already begun the scheduling process for an appointment with Dr. Hope Rugo at UCSF. She’s a well respected oncologist working with Triple Negative cancer. She has lots of trials going on all the time and I will begin working with her-hopefully meeting as soon as next week. I have to be off of Xeloda for 2 weeks before starting an immunotherapy trial, which seems to be a very possible next step.
I had my tumor markers tested with Foundation One and found that I have 5 mutations in my cancer cells which are driving tumor growth. There are 3 drugs which
can specifically target 2 of these mutations. She said it’s like a light switch. If the drug which targets that mutation turns the switch off, and that is the mutation that’s driving the growth, it can stop tumor growth. It may take a while for the cancer to find a way around that mutation so it buys time. None of these things can be done at the same time. Dr. Rugo will advise what she thinks is the best option for me.
Stereotactic Radiation is also an option BUT in order to qualify for the immunotherapy trial, I have to have “measurable tumors”. They are so small now that it is possible that doing radiation would wipe them out. This seems like a good thing but we have to remember that my cancer is systemic. Just because the tumors in my lungs would be gone wouldn’t mean it wasn’t lurking around ready to pounce somewhere else. Waiting to do radiation is probably a good idea so that I can qualify for a trial and also we can measure them to determine if the therapy is working. They have had good success with immunotherapy for breast cancer so I am hopeful.
Our feelings are mixed. I wanted Xeloda to work and my tumors grew instead. bleh. But it could have been much worse. I could have found out today that the cancer had spread to other organs. Yay. it didn’t!
It’s true that Triple Negative Breast Cancer is the subject of much research right now. What if I’m on immunotherapy long enough for a better treatment to be an option? That would be awesome.
I’m thankful for 3 or 4 months of riding this wave. The “cancer hasn’t spread” wave. Life can go on as planned. I can go to work, pick my kids up from school, schlep them to afternoon activities, go on dates with my husband, plan to travel. This is a new way to live, for sure-always wondering when the really bad news will hit. People ask me all the time how one lives like this. I don’t know. I’m still in disbelief that I’m living like this. When I slow down by going out of town or taking an unexpected day off of work with a sick child for example, I realize how stressful this is. There is always this baseline of anxiety and fear and it’s hard to be productive. One day I had off and I literally sat in my chair for 2 hours straight not doing much of anything. I cried some, read some, sat and stared into space some. Then it was time to get Eli from school. So I got up, got myself together and left to do the next thing.
I’m not promised a long long life, or a life without sickness or pain. My days are numbered..But they were numbered from the moment I was born. Not much has changed there. The Bible says the hairs on my head are numbered as well. That I’m held in the palm of God’s hand. Does my faith waver? YES. But honestly, it’s the thing I come back to. “I believe, help my unbelief.”
Journal entry by shea Gilbert — 10/1/2016My dad was 40 when I was born. As a child, I always thought of that as really old. Most of my friends’ parents were younger than him (nowadays that seems strange) and I remember one time sitting in his lap in his office chair, asking him, “Does that mean you’re going to die before my friends’ parents die?”. He answered honestly, “maybe”.
Dad had a few health “events” while I was growing up. Heart attacks, bypass surgery, a stroke. I didn’t realize the gravity of these things until much later. As a teenager, my thoughts were mostly about myself and I truly didn’t think my dad would die. It never crossed my mind. Doctors repair things like blocked arteries and they did, in fact, repair Dad’s heart that day.
Other health events I remember seeing Dad endure included breaking (maybe?) his elbow while helping a neighbor move a car out of the snow. I was appalled as I saw it swelling to the size of a baseball (at least in my mind, it seems like it was that big) as we sat on our orange patterned linoleum, icing it. He scraped his knuckles almost to the bone once when he tried what the kids down the street were doing…sitting on a skateboard and riding it down a driveway! He was holding on tight I think, but that skateboard was pretty close to the ground so when it wobbled, his knuckles took a beating. Once I brought a kitty home from the shelter and Dad thought it would be efficient to dunk the cat while bathing it in the sink. I am not sure I’ve seen him panic and throw such a fit since. The punctures in his thumb were DEEP. The clearest memories I have of my dad from my childhood are those when he was helping someone or some organization.
Dad’s hero was his Uncle Allen. His life is another story, a long and impressive one. Dad was a child when his young uncle returned from WWII, after enduring unbelievable injuries and partial recovery after being in The Battle of Iwo Jima. I’m not positive, but I think Dad would say he made the most impression on him of any other person or event in his childhood. I heard about it my whole life. Duty was (and is) important to Dad. You finish what you start. You treat people like people. You have high expectations for yourself and others. You are honest, and you have integrity. Honesty and Integrity were THE policy.
When I was packing up for college, the minivan was backed into our garage and I was piling it full. Tensions were high and Dad put something down on top of a picture frame and it broke. I freaked out. Sobbing, yelling, “I DON’T EVEN WANT TO GO!” It was a breakdown/temper tantrum. I think I needed a breakdown about leaving the home of my childhood, the safety and familiarity of my parents and love they provided day after day. Dad didn’t say much. I remember him just looking at me (probably wondering what was going on in my head) and then quietly repairing the frame. He must have understood.
I’ve been thinking about all of this because I’m turning forty tomorrow. I’m going to be the age my dad was when I was born, forty years ago. I was my dad’s 4th child and my mom’s first, which explains so much, when I look back. I have three siblings who were teenagers when I was born and they were my Superheros. In Elementary School, I was saying, “I get to go to my SISTER’S house with my niece and nephews on the FARM! We get to ride in the back of a pick up and ride horses!” My brother visited me once when I was in the 4th grade and bought a school lunch with both chocolate and regular milk. I felt famous. He also gave me a Coca Cola sweater dress and then a leather bomber jacket. What more could an 11 year old ask for? My other brother worked at NASA. What???? Who else has a brother who works at NASA and makes robots? I remember his band posters on the wall during the times he lived at our house. It was my first introduction to The Police. Some of the best gifts I’ve been given are my nieces and nephews, who began arriving when I was almost 4 until I was in college. I felt like a little mama, changing diapers, bossing them around and playing with them for years.
Since leaving home as an 18 year old, my dad has been a stable voice in my life. Eric and I love to say to each other and to the kids, “You know what Grandpop says, ‘It’s not a good deal if it’s not a good deal for you!’” He really wants to hear what’s going on with me. Since I’m a mom, I know. It’s like a spouse’s interest, but different. A parent is a child’s biggest fan.
When I had to call my dad in September of 2013 and tell him I had cancer, he was in the hospital with probably the most challenging health event to date. He was confused with “ICU Psychosis” and actually now that I think of it, I didn’t tell him! I couldn’t. I think my brother drove from Alabama to tell him for me. What love and care. It was a blur for me and to have my family drop everything to care for me from afar was humbling and stabilizing. I don’t know what it’s like to be separated from my child while she endures the battle for life, but surely it’s hard.
It’s been almost 1 year since I learned of the metastasis. The day everything changed. 3 weeks ago after my last scan, I found out that, of the 50 women originally in this Trial, I am the only one left. 49 women heard, “I’m sorry the drug didn’t work”. Every 9 weeks I know there is a chance I’ll hear those words, too. Eric and I meet with a therapist every couple of weeks and we continue to have to work on what it means to live with the uncertainty of metastatic cancer. It’s hard to think about the future, to plan or dream. The longer I go with this drug working, the easier it is to imagine life in a year, 2 years, 5 years. But I always catch myself, and have to give myself a disclaimer. Yesterday I was talking with someone about bedroom arrangements when my oldest daughter goes to college. I had a mental tug-of-war during the whole conversation. I forced myself not to say, “if I’m here when she goes to college”. There is stress in the uncertainty and potential loss.
Turning 40 does not feel dreadful. I am so thankful to be here, able to celebrate this week as I’ve lived 40 years. Not 36 or 39, but 40. The struggle is that often internally, my thankfulness feels conditional. I am thankful for 40 years BUT I want 40 more. I want to be my dad’s age. 80. With grandkids and great grandkids. I want to drive all my kids to college, to hold all their babies and give them support when they bring them home from the hospital. I gave Eric a card a couple of years ago that says, “Let’s grow old together, and still hold hands”. I walk into his office and it catches my eye almost every day. I don’t want him to sleep in a cold bed. I don’t want him to have to learn to live without his wife, and how to parent his children without a mother.
All my feelings are so complicated these days. It is hard to talk about, so please forgive me when I just act “normal” when I’m not. I’ll never be “normal” again. Cancer has already imprinted on our lives whether we like it or not. I’m a talker though, so please forgive me as well, if I spill all my emotions while standing on the playground or in Trader Joes. And be patient with my kids, who each have to learn to live with cancer in their own ways, requiring different kinds and amounts of help. Even though they’ve been told I’ll have cancer treatment for the rest of my life, the younger ones will still ask, “When can you stop having infusions?” and “Do you still have cancer?”
One year later, life isn’t back to normal. Life is a struggle. And it is beautiful, and messy. And worth it.