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Adventures with CT’s

The good news this week is that my scans showed no changes in my cancer!  The annoying news is that I had a reaction to the contrast used for the CT. I had itching, irritation and swelling of my tongue the last 2 scans. The symptoms showed up 1-2 days later and were very concerning to my doctor. (the dangerous reactions can happen suddenly and progressively worse with each exposure) This time, I was premedicated with Prednisone and Benadryl but still about 5 hours after the scan, I began having the same reactions. I talked to doctors off and on and decided to stay at home and treat it with more Benadryl throughout the night. We live a couple of blocks from a hospital so we figured if I started having trouble breathing Eric could get me to the ER.

Wednesday morning was Audrey’s 8th grade graduation so when I finally talked to my Oncologist and she prescribed more prednisone (and continued Benadryl) , Eric had to go by the pharmacy on his way to the ceremony. He made it just in time and within a couple of hours of taking the Prednisone I was feeling much better. By Wednesday night I was almost back to normal.

For more than a year, the cancer has been about the same size. One tumor has disappeared and only scar tissue remains and the other one has “flattened” but measures still a little under a centimeter. Now my Medical Oncologist will talk to the Radiation Oncologist and find out if they want to do some radiation to just get rid of what’s left. If we go with that option, I will continue the Pembromizumlab every 3 weeks and scans periodically, indefinitely. Now we need to come up with another option for scans, since I can’t have the CT contrast anymore. Probably PET scans are the next option, but they are expensive and she says the insurance will argue with us for every single scan.

I believe she told me on Thursday there was a 4.7% response rate for this trial. All over the country there were about 2000 women participating. I’m so thankful to be in this 4.7% but clearly there’s a long way to go with immunotherapy.

School is out as of yesterday and we are tired. This week was hard. I was a MESS on both Prednisone and Benadryl and somewhat anxious awaiting results of my scan, setting aside a day this week for the infusion, last week of school stuff… I’m glad it’s over.

We are getting ready to travel to Georgia on Tuesday. My dad is having surgery for a heart stint next week before undergoing surgery in a few weeks for both thoracic aorta aneurysms AND abdominal aortic aneurysms. He’ll be in Piedmont hospital if any of our family friends are interested. My sister and I will be camped out there for a few days. He has not had an easy time with his health the last few years and I know he wants to be healthy so he can be back in his routine of going to the rehab center to work out and traveling with his buddy in the Poultry industry each week. Once he recovers he can exercise again but for now he can’t have his blood pressure elevated at all. Looking forward to seeing him.

As summer begins I’m thinking about goals. Things shift in the summer, mornings are slower, there’s more time for so much. I don’t want to waste it. One goal I have is to not be the one preparing all the meals for the kids OR cleaning up their kitchen/house messes. Who’s with me? I may go purchase 4 colors of plates, utensils, cups and towels. (eric will disagree with spending money on this but $80 for the sanity of his wife may be worth it. I don’t know. He has a firm philosophy against spending money) That way everyone would be required to use their own color and the person responsible for clean up would be clear. We don’t do day camps so there is a lot of down time at home. Sounds great until I want to throw everyone out the windows. I’m open to suggestions in this area.

With that, I’ll close. 🙂 Happy summer and happy scans that show now cancer growth. Thank you for all the support.

It’s that time again

 

Today I go for a scan and I’ll know the results by the weekend. Because I now have an allergy to contrast dye, I have some pre meds to take this time and the prednisone had me up and feeling ready to clean or organize or take a run at about 4:30 this morning. I take it again at 10 along with benadryl. We’ll see how they work together. 🙂

I was honored this year to be able to participate in a show called Listen to Your Mother in San Francisco, where a group of women were invited to read their essays about motherhood. It was such a good experience to be able to share with the other amazing women. It wasn’t able to be recorded BUT this past Friday night, my friend hosted a small gathering at her home for a few of us to read our essays. I am not a professional writer, speaker, entertainer (Ha!) but many have asked to see it, so I’m going to attempt to post the video here. It’s less than 4 minutes long. Enjoy.

 

Glimpses of Life

Glimpses of Life

Last Thursday, the day of my 23rd infusion of Pembromizumlab, the drug that has kept me alive and surprisingly healthy for more than a year, was a good day. Every 3 weeks I schlep myself to the city for this infusion and make the most of the day. A friend meets me there and we have lunch and keep each other company for the morning or Eric comes along (always he comes with me on the weeks I have scans) and we sit quietly familiar with the setting. Last Thursday was a day I was able to see beauty in this hard place.

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I like to drive to the city. Even though it takes over an hour I still love the quiet of the car after a busy morning in the house. Traffic. There’s lots of it. If I leave after 7:15 it would be worse.

My first appointment was getting my port accessed and labs at 8:30. The size of the needle (it looks like a giant thumbtack)  the nurse sticks into my chest is probably scary to see but it doesn’t really hurt much, because the port is right under the skin.

I headed down to the cafeteria and got an egg scramble with spinach, mushrooms and chicken sausage.

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The next appointment is at 9:30 with Dr. Rugo. This appointment can’t begin until the lab results have gotten there, so sometimes its a little late. Actually this week, Dr. Rugo was in China (last time she was lecturing in Saudi Arabia) so I only saw the NP, Marina. Each time, I have a complete exam with the NP, and then if Dr. Rugo is there I meet with her afterwards. She takes a look at my labs, at me and if I’ve just had a scan, she reads the report and discusses it with me. After meeting with the NP, I went over any needed info with the study coordinator, Katie, who was in the room the whole time. Eric arrived (he took the train and bus) during this time.

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My last appointment of the day was the infusion at 10:30. After meeting with the NP, she ordered the medication from the pharmacy. While this was processing I went ahead and checked back in at the infusion room (where I had previously gotten my port accessed). The woman at the check in desk is always kind. The waiting room and infusion chairs are filled with people with complex, sad, triumphant and devastating stories. There are always people who look “healthy”, like me, and always people who look extremely sick.

Usually I can spot someone getting a tour of the infusion room because they’ve just gotten diagnosed and are being shown around before their treatment begins. They always look shell shocked. Nobody wants to be there. I remember feeling this way, but after a while its easier to put the dread aside and try to see beauty in the day.

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Next I sat in the infusion chair and got hooked up to the bag of saline which is given throughout my infusion. I think getting the whole bag helps with me feeling better afterwards. Eric sat beside me. Sometimes we talked and sometimes we read or just got some work done. Faithful is the word best describing my husband. He is faithful in every way. Beside me whenever I need him. This picture stands out to me because there’s a man behind a curtain on the other side of the room also faithfully sitting by his wife. She was in pain all morning, asleep much of the time and she looked awful. A doctor came by, nurses spoke softly in clusters around her. He looked exhausted. They were trying to get her pain under control. I couldn’t help but wonder if this would be a picture of our life in the future.

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The Pembromizumlab arrives from the pharmacy. Here are 2 nurses who often take care of me. I absolutely LOVE this picture. I’m going to have it printed and take it to them. I have such a good time with them and genuinely love seeing them every 3 weeks. Lauren is on the left holding the bag of drugs. 🙂 Evelyn is on the computer. They have to triple check all the info with 2 nurses before administering the drug. Pembro only takes 30 minutes so once it gets started we know we’re almost finished. Eric left, when the machine beeped to go get the car. The nurse removed the needle from the port (takes about 20 seconds) and I was off.

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After getting unhooked, I stopped by the bathroom.  The sign reminding chemo patients to flush twice is a constant reminder that “YOU ARE SICK”. Cancer isn’t contagious but traces of chemo can be found in bodily fluids for some hours after the infusion. When I had chemo 3 years ago, I made sure to be extra careful for 24 hours after being home. Pembro doesn’t have the same issues.

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On our way out. This trek to the hospital at Divisadero and Sutter is becoming quite routine.

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Eric and I decided to get some lunch near our home so we wouldn’t get stuck in traffic in the city by staying too long. This was a salad from a restaurant around the corner from our house.  Yum.

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Afterwards we realized we had a little bit of time before we had to get the kids from school so we decided to do some much needed calendaring.

 

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I rushed to pick up Emma and then Eli. We had some time so we got some ice cream after school. It’s starting to get warm on some days.

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I dropped Emma off near the house and then took Eli to an appointment we go to each week. I felt a little fatigued climbing the stairs. I generally feel good after an infusion except for just tiring easily.

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For Mother’s Day I had asked for the family to play Hearts with me 3 times without complaining. I had to teach them and I suppose it went ok. They weren’t super enthusiastic at first but for the sake of Mother’s Day requirements, they put up with it. Eli was my “partner” and Caleb was “partners” with Eric for this first game. We’ll try again this week. I’m hoping they’ll be hooked after a few times.

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It wasn’t all bad. The kids got very silly. We laughed a lot.

Sometimes the trip to the city for my infusion is something I dread and feel extra burdened by. But for some reason this time I saw glimpses of grace and beauty. I’m thankful for these little signs of life in the day. I don’t want to forget because some days aren’t so lovely. Or maybe they are but my eyes aren’t open.

Hey-I’m Alive!

I’m sitting in my lovely neighborhood coffeeshop not knowing where to start. I spent last week really stewing over some thoughts and I don’t know how to put them in a cohesive post.

In October, 2015 I received the dreadful news of cancer popping up in my lungs. I did what every cancer patient should never do- I always do it- and I googled. The floodgates opened. I googled and I googled and I clicked and read and read. I found that a woman with Triple Negative Breast Cancer and lung metastasis has a life expectancy of 12-18 months. I did the math. 18 months would be April, 2017. I imagined the months leading up to April 2017 as I’ve seen others live their final months with cancer. (pain, misery, hard, hard and more hard) I imagined my girls being 15 and 13, my boys would be 12 and 9. My husband beginning his 5th decade as a single father.

My mom didn’t keep journals. I have a few letters she wrote to me but one of my favorite things I have of hers is her 2008 calendar. Kay was very detail-oriented and wrote all of those details down in a paper spiral calendar. I have memorized those last few months of her handwriting. Doctor’s appointments, my birthday, church meetings, christmas parties, thanksgiving plans, phone numbers, reminders, grocery lists. It’s the everyday life of the mom I loved. This is what I was thinking about when I found myself staring at calendars in the fancy stationary store. (yes, I have a neighborhood stationary store) I bought a pink leather one-not a depressing color, and long-lasting. It was over $30. Ridiculous. But I thought of all the things I needed to put in the calendar and how important it would become to my family. I thought it would be a good way to put all the important stuff in one place. That it would make it easier when Eric had to get ready for birthdays or Christmas without me. I kept the notes in the margins at the time they needed to be done…when I started christmas shopping, thinking about birthday presents, weekly grocery lists, school registration, dentist appointments and reminders to make appointments for well visits months in advance, when to register for soccer and chorus and summer activities….I imagined him meeting with my friends, making sense of it all, my Village coming to his side to help with the impossible task of filling in the hole I left.

Now I’m crying into my Free Trade, Honduran, Washed coffee with red currant notes. Did you catch that????? I’m crying. In a cafe. Drinking the coffee of my dreams. In May 2017. I didn’t die! I’ve spent the last week being so surprised. Completely surprised and amazed. We were hoping to buy time with chemo and then a clinical trial. A clinical trial that hasn’t worked for most people is working for me and I can hardly believe it.

I was surprised when I was able to spend a day with my dear friend Katie last week. She’s been by my side from the time I birthed my first baby all the way across the country and now we’re stumbling through teenage years together. We walked, we talked, we were so alive together!

Eric and I went on a Friday hike in Tilden Park. There was climbing, falling in the mud, staring at a stream running through the woods. We were laughing and quiet and thoughtful and ALIVE together.

Two friends from Atlanta came last weekend and we marveled at the redwoods, the rocks on the beach, the beauty of Occidental, CA, and talked and talked. Oh the pain in the stories of these friends but also the Beauty. Praise God we were also all three alive. We made it this far!

All this awareness of being alive has its ups and downs. It’s nice to be pleasantly surprised now and then at how healthy I am right now. But it also brings the uncertainty and fear of the future. Cancer is tricky and this type usually finds a way around the treatment. Ugh. That bursts my bubble. There is a difference in how I’m living life now compared to October, 2015, when I bought my pink calendar. That calendar isn’t within arm’s reach anymore. It’s under a stack of books and papers on my desk. I didn’t continue using it because at some point I began focusing on living life more than the plans for when I’m gone. Is that getting closer to “living with” cancer rather than “dying from” cancer? I hope so.

holistic living

One hot September day in Georgia, I ventured out of my house with my then just-turned-3 year old standing like a queen on our sit-and-stand stroller. In the front seat sat my sweet, bald, 16 month old and in the carrier strapped on top was my newborn baby boy. When it’s hot in the suburbs of Atlanta, the huge air-conditioned mall is the most attractive place around. There was a pretzel store right next to a completely padded play area with just one exit. Perfect. I parked inside the play area and started feeding the baby. After a few minutes, the three-year-old ran to me saying she needed the restroom just as she started having an accident AND Bald Toddler toddled right out of that one exit toward the pretzel store. I was in a pickle.

People observing might have thought I was strangely detached. And I was, a little. I let a perfect stranger fetch the determined pretzel seeking toddler. I finished up with the baby and then cleaned up the 3 year old, strapped everyone back into Mount Stroller and we were on our way. I didn’t lose my cool. I have a clear memory of looking around and thinking, “huh. I should do something about this.”  Why no crying or yelling or losing my shit?  Because I had started taking an antidepressant a few weeks earlier and I had stopped crying all the time. I had perspective I hadn’t had before. It was the first time I realized the medication was working. I continued with it  for almost a year and then, with the help of my doctor, got off of it. I was able to feel more alive during that season. (After my first baby, I didn’t have medication and was very depressed for quite a while, so I knew the difference.)

When I was diagnosed with cancer in 2013 I took an antidepressant again. The stress of carrying all 4 kids’ anxieties and the craziness of regular life on top of chemo and everything was just more than I could handle. The medicine took the edge off. I didn’t fall into The Pit as deeply. Another season.

My oncologist prescribed the same medication in 2015 when I was diagnosed with metastatic cancer. The news received was my biggest fear and coping felt unbearable. Again, I was able to cope better, I believe, because of the help of this medicine.

Recently though, I’ve been feeling less whole.

I love being with people more than anything. I love stepping into someone’s hard situation or story and walking with them through it. I’ve noticed lately, I will hear of someone’s hard situation (a divorce, a child with cancer, a mom with similar post partum depression, etc) and have compassion but not feel compassion. The same feeling I had sitting in the play area in the Georgia Mall washes over me. “huh. I really should feel more about this.” When my own child was sharing a heartache and I wanted to feel more compassion, but couldn’t, it got me thinking. I didn’t feel like a whole person. Me being whole includes crying with the friend(s) in painful relationships and being angry and sad that my 9 year old’s classmate has been diagnosed with cancer. I don’t want to just know that it’s sad, I want to feel it.

It’s a slippery slope though, right? Me being whole also includes feeling really sad that I’m living with cancer, sad that my kids are living with their mom living with cancer. What if I’m not taking medication and I fall off the cliff?  I’ve decided I can handle this sadness right now, though, through the grace and compassion of God.

I’ve been off the antidepressant for for a little while now.* This morning I heard an update from a friend about her family. The heart-wrenching story of this family would fill a book. It involves sickness and lack of access to medication in another country, children trying to cope after a parent’s death along with immigration issues. I looked my friend in the eyes and couldn’t stop my own tears. And today, I’m thankful for my tears.

 

 

*My depression and anxiety seems to be situational. Some people should not get off of their medication. I support that! Nobody should stop taking medication without a doctor’s advice. Also, I’m pretty sure everyone should see a therapist.

Her husband’s eyes

I was leaving UCSF after my scan on Tuesday, paying my parking bill (I was running late so I didn’t have time to park on the street) when a woman, obviously sick with cancer, her blurry-eyed, blood-shot but blue-eyed husband and her mother sat down across from me. I overheard their conversation.

“So-and-so said that Camp Kesem is really good but the bereavement camp would be good for….after…you know.” Mom with cancer said.

Her own mom tried to steer the outlook by saying, “you don’t know when….”

Daughter with cancer, “Mom, just…we have to talk about it…”

Husband- in his work suit- sat, staring into space. I think I was reading his mind-he couldn’t believe they were at the point of having this conversation.

I stood, watching for my car, and said, “I overheard you talking about Camp Kesem. I have Metastatic cancer and my four kids all loved Kesem.”

Talking to the woman, I was seeing her as an individual, not really imagining myself in her place, but seeing her struggle as hers and impossible-yet she was a mom and she wanted to plan a good summer for her two teenagers. She asked me about my cancer, I gave her a brief description and she said….

                                                  they said I may have around two months.

My mind spun. They had that conversation today. The treatment isn’t working anymore and we’ve done all we can do conversation. We talked about my impression of how many kids at camp had lost a parent versus kids whose parents were still living. I wanted-in that small space-to help her come close to a logical decision about camp. Moms plan summer camp schedules for their kids and she is still their mom, dammit! It was a short conversation and she stood up (slowly-She was frail.) and sobbed loudly as she hugged me. I looked over her shoulder at her blue-eyed husband, his chin quivering, tears falling down his cheeks and saw my own dear man in him. He loves her so much and can’t believe it’s come to this. He’s helpless to make her better. He wonders how his two teenagers are going to do this life without the one who loves and cares and takes care of details and the camp plans….

My car was there. I looked at her and said,  “I’m so sorry you’re at this place.” I looked at her husband and said, “I’m so sorry.” No sugar coating or fancy encouragement. I hated that they were there and so did they.

Climbing into the car I couldn’t close the door fast enough. I cried-moaned and sobbed-for the next five minutes. NOT FAIR-Oh God, the pain was tangible for them-and me-

I really felt my scans were going to bring similar news. We already tried the first chemo that didn’t work and now I was positive I would hear that the trial drug wasn’t working either. It would be Eric’s blurry eyes I’d be looking into, making uncertain plans for my babies’ future.

But Thursday came and I think my brilliant oncologist was pleasantly surprised when scans showed the tumor continuing to shrink!  Eric and I -again-looked at each other and exhaled. Why me and not her? I’m not unhappy about my good news, of course, but I just hate that she didn’t get the same news. And I keep picturing her husband’s face.

It’s strange to feel so thankful for a few more months of exhaling while also feeling guarded against too much hope. In a moment, our world could crash. I tend to protect my heart from falling from a place of optimism and hopefulness because I believe the crash will be worse than falling from a cautiously hopeful place. In reality, either crash would be the worst so I should live at the top of Optimistic and Hopeful. But how?

More on that later if I ever figure it out.

Waiting

I grew up in the South. We had a huge Forsythia shrub which bordered our neighbor’s yard, planted by my mom, who brought clippings from her grandmother’s yard, in Mississippi. That shrub was rooted in my mother’s heart, a piece of home for her. She would bring in clippings to force bloom when winter felt a little too long. It was a ritual that brought warmth and hope into the house. Soon, the azaleas would bloom and then, Spring!

I walked past them at first. I was in a hurry to buy “easy food” so the next morning wouldn’t be so crazy while the kids made their lunches. But I circled back toward the front of Trader Joes, where the brown branches were displayed. I imagined my mom clipping limbs for FREE and here I was, paying good money for bundles of dead branches. And now they sit beautifully dead on my piano in a vase that probably came from my mom’s house. Waiting. I see the beginning of tiny pink blooms. I don’t even know what kind of bloom it will be or if I scored the branches correctly…but it seems appropriate to stumble out of my bedroom in the morning to see the branches, waiting, in the dark.

During this Lent I don’t even know how to wait. I’m impatient and busy. I’ve had a cough for a week that is freaking me out. A little cough that won’t go away could be nothing. Allergies. Or-it could be tumors growing. Thankfully I have a scan today (I won’t know results until the weekend, FYI) so I won’t have to wait much longer.

Hoping in the waiting. Waking up this morning, coughing and thinking, “I’m still coughing.”

“This house is a mess.”

“I should do the laundry”

“I really should exercise”

“I’m still coughing”

“I should drink some tea and get a blog going.”

Today I’m praying as I’m writing: Help me wait well. Help me truly live this day. Help me to see my children, to hear what they are really saying. Forgive me for my biting words and ugly thoughts. For rushing past the dead branches. For not noticing tiny blooms. Wait with me, Jesus.

If you’re reading this, you’re aware I’m now writing in this new space. My Caringbridge site will be active still, but strictly to keep track of my medical issues. I hope to write more often here, about ways I’m learning and struggling with truly living my life each day. I’m sure I’ll include thoughts on being a mother, wife, cancer fighter, teacher, daughter, friend…..

I look forward to many mornings in my sunny hippy Berkeley cafe, writing while living life, waiting for Spring.

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