Wednesday, May 25, 2011

Summer's coming

After 4 cycles of the chemo, and titrating the dose from 3 pills a day to 2 because of side effects, I had a PET scan yesterday that showed that my active areas are smaller, but not completely gone. Dr. Laudi wants me to increase my dose to 4 pills a day and repeat the PET scan in August.

Natalie and Larissa are finishing up their school year. Field trips, Track and Field Days and parties. Little Olivia is crawling around and now pulling herself up to stand. Busy times... Sleepy Mom.

Friday, April 29, 2011


Can a person get their $10 copay back if they storm out of their doctor's office? Just wondering.

Today I met with a new nurse practitioner at Dr. Laudi's office. The entire visit was spent clarifying my current status which should all be in my chart. I was asked if I am still throwing up blood. That happened one time, months ago. I know we all have to learn. And I know we are all teachers at times- this is our chance to give someone the patience and understanding we all hope for when we are learning. Today, my patience was in short supply even after scraping the bottom and around the edges. Today, I saw a garage sale on my way to the clinic. Today, I just want my money back.

Later at home, I watched as Olivia learns how to crawl. She rolls onto her belly and lifts herself onto her hands and knees. She inches her knees forward, but doesn't seem to know what to do with her hands, so she just starts rocking, back and forth, until she accidently moves her hand or she tips over. It can be a painstaking process to watch, because you just want to help her, to do it for her, but for all the connections and pathways to be created in her brain- she has to learn it herself. An inch at a time.

"What's she doing?" asked Dave, a cab driver over to talk to Mark, after watching Olivia rocking for awhile and going nowhere.

"Just figuring out how to crawl."

"She's too small to crawl."

It is something to see. A few weeks ago, Mark and I were in a Byerly's grocery store walking through the produce section. The produce scales were large and gleaming. Olivia is small and was sleeping in my arms. We couldn't resist. Olivia weighed 13 pounds 6 ounces.

Friday, April 8, 2011

Care Notes

Dr. Laudi showed me my PET scans. I have active areas in my lumbar spine at L2 and L5 and a small spot on my icshium, which is the lower part of the hip/ pelvic bones. The plan is for me to take Xeloda (2 weeks on, 1 week off) for about 6 months, then rescan. Dr. Laudi thinks, once these active areas are taken care of, I may end up back on Tamoxifen. Xeloda has given me insomnia, so I am exhausted for the 2 weeks on and try to catch up on sleep during the 1 week off. It's a vicious cycle- always chasing sleep, but never quite catching it.

Mark and I have been working with a realtor and hope to find a new home for our family. Natalie and Larissa are busy with school, Girl Scouts, soccer and church activities. Olivia is sitting up now and playing with toys. Amore gets a surprised look on her face every time Olivia grabs her ears or pulls her tail trying to get it in her mouth.

After picking up the house today, I was straightening up Mark's desk. Mark claims to have a "system", but I wonder about that every time I vacumn under the sofa and suck up the receipts and envelopes he apparently has "filed" under there.

Buried in a pile of miscellaneous papers, I came across some pamphlets called "Care Notes." Given to people in times of need, they are meant to offer support. The tag line reads: "Take one- take heart. Give one- give hope." I leafed through them looking at the topics:

"Feeling overwhelmed when one loses feelings for another."

"When your spouse has cancer."

"Mother Teresa's response to suffering in and around us."

"We will meet again."

And, the one that made me giggle... "Beginning anew as a younger widowed person."

Hello? Last check, I am still here. Sometimes, I just have to laugh...

Wednesday, March 30, 2011

My Boobs in the News

Last Thursday, Lindsey Seavert, a reporter from WCCO news and Dave, a photographer/ cameraman, came to our house to interview me and my family about breastmilk sharing. I had spoken to Lindsey weeks before on the phone as she had been trying to get approval for the story. Tonight, it aired on the 10pm news. Maybe the Star Tribune story paved the way?

I thought the story was well done, even though the news anchors oddly referred to breastmilk sharing as a "Black Market" and they ended with the usual FDA fear factors. The true heart of the story was Christa Johnson, a breastfeeding mother who read about my need for milk on the "Human Milk 4 Human Babies" Facebook page and felt compelled to help. Tears filled my eyes when Christa said she felt "honored" to help me feed Olivia. I am so grateful to Christa and the other breastfeeding mothers who share this precious gift...

Personally, I found it amusing that Lindsey interviewed a Lactation Specialist at Children's Hospital in Minneapolis- since I work at Children's, Olivia was cared for in the NICU and the Special Care Nursery there and it was from the NICU at Children's (where her premature daughter was being cared for) that Christa contacted me about sharing her breastmilk.

Everyone agrees that breastmilk is the best nutrition for babies, especially premature babies. This is reinforced time and time again, but little is said about the mothers who are unable to breastfeed themselves. A short news segment cannot possibly go into all the issues involved. Remember, the Denver Milk Bank cut off our supply of milk without a warning. The mothers donating milk to milk banks- out of the goodness of their hearts- may not realize that after "processing" their milk is sold for $3-5.00 per ounce and few parents can afford it. The "processing" itself destroys some of the unique qualities of breastmilk.... Human beings are the only species that routinely consumes the breastmilk of another species... I could go on and on... :)

If you missed it, the story can be viewed on the WCCO website:

Monday, March 21, 2011

PET scan

This morning, I had a PET scan. You know the drill. A radioactive-sugar combo is injected into my vein, then I clear my mind and lie still- with my arms extended over my head
for 45 minutes- while this substance travels throughout my body. Then, for 22 minutes, my body is scanned to show where the sugar has been distributed, revealing cells that are more active.

This afternoon, Dr. Laudi called me after reviewing the scans. He said the scans showed active areas in my spine. I haven't seen the scans myself yet, so I don't know if these areas correspond to areas where I have back pain or even how much of my spine is involved.

This means I am no longer in remission. For today anyway. Remember, Stage IV Breast Cancer is treated like a chronic disease. When a particular treatment stops working, then I move to another treatment. Dr. Laudi took me off Tamoxifen and has ordered Xeloda, which is a chemotherapy pill. I will take 3 pills twice a day for 2 weeks, then have 1 week off. The side effects include the usual GI stuff, like nausea, vomiting, diarrhea and mouth sores. There can be fatigue, weakness, and possibly "hand-and-foot syndrome" in which a person's hands and feet become painful, red and swollen. Hair loss, skin issues, even insomnia made the list, which is unfortunate, because sometimes sleep is a refuge, a healing place.

If you google "Stage IV Breast Cancer" you will be assaulted by words like "incurable" and "terminal." You will learn there is no Stage V.   Fear may come, sniffing around, looking for a place to dump its load.... but remember, cancer is my teacher.

The last time I was told my treatment wasn't working- Olivia appeared and blessed my life in ways I could have never foreseen or imagined. She takes her place in my life, in the world.  She is my sunshine.  She takes her place among the flowers and butterflies, among the people and the animals who bring their light to the world... who care about me, stand by me, make me smile, pray for me, and give me hope...

Cancer is my teacher still.

Saturday, March 19, 2011

"What's the kindest thing a stranger has ever done for you?"

Aimee Tjader, with the Star Tribune in Minneapolis, wrote a story about milk-sharing that was printed in the Lifestyle section of today's newspaper. She interviewed me for the story and Elizabeth Flores, the photographer who came to our house, took pictures of me with all my girls. (Nan and Larissa are home on Spring Break).

I love how the story starts:
"What's the kindest thing a stranger has ever done for you?..."

To Olivia's many Mothers,
Thank you for sharing your precious gifts.
We are forever grateful.

Tuesday, March 8, 2011

Olivia loves Dr. Laudi

Dr. Laudi wanted me to continue Zometa infusions to strengthen my bones, so today I went to the infusion center at the oncology clinic. Since the infusion is less than an hour, I took Olivia with me. My IV was started and Zometa was dripping in, when nurses and the receptionists asked to hold Olivia who was smiling at everyone. So off she went- from person to person- making her rounds through the office, smiling at all the people who helped her get here safe and sound.

Later, Olivia reappeared in Dr. Laudi's arms. Smiling, he said, "She just wanted me."

Tuesday, March 1, 2011

Birthday Surprise

Mark surprised me for my birthday and arranged to have my sister, Amy, watch Natalie, Larissa and Olivia overnight and my parents watch Amore, then he and I drove up to Duluth...

Friday, February 25, 2011

My 30th Birthday

What a wonderful birthday!

I went on a field trip with Larissa's class. We went to the Children's Theater and saw the play "Babe." I loved the book and the movie and the play was so fun and creative- wow!

When I got home, I noticed "someone" had hung balloons on our door and put yellow "police" tape around it. There was a sign hanging from our deck rail announcing that I am 30 years old today. Inside there were signs and more balloons and flowers.

Later, at my parents house we had our traditional pizza party and Mark brought a cake from Byerly's.

I am glad to be here. I hope the next 30 years are just as fun... minus the cancer ;)

Friday, February 18, 2011


This has been a stressful week.

After my hysterectomy, Dr. Laudi prescribed a drug called Effexor XR (extended release) to help reduce my hot flashes. Effexor is classified as an antidepressant and it helps with hot flashes by somehow interfering, intercepting or rebalancing the chemicals in the brain that cause serotonin and epinephrine to transmit a hot flash.

With any drug, there are always potential side effects. The side effects of Effexor XR vary from headache, anxiety, and (ironically) increased flushing and sweating to bizarre behaviors, impulsiveness, and (ironically) worsening depression. So I scanned the list- whatever, whatever, whatever- and moved on. But, after taking it for awhile, I didn't like how the drug made me feel- I'd rather live with the hot flashes-so I asked Dr. Laudi how to wean off of it. I learned that people weaning off of it can have the worst side effects.

Mark, as usual, studied the side effects list like someone cramming for a final exam. This checklist memorized, Mark follows me from room to room or sits in his desk chair, swiveling round and around to observe and monitor me.

So, what was the biggest contributor to my pissed off, bizarre behavior? Effexor XR? Or getting burned by my husband's magnifying glass? If it was only that easy...

While Mark points his finger at the drug and refers to me as being "Effexored-Out" at times, I desperately need peace and understanding. Typically, Mark reacts to my diagnosis and my treatment in terms of how it affects him. It's like everything I go through is filtered through him first and becomes his in the process. Maybe this is just what happens when you love someone deeply- the lines between you become so blurred you are like one person. My pain IS his pain. My joy IS his joy. A beautiful thing in many ways, but sometimes I just need him to back off- to be accepting and supportive of ME... without first and foremost contemplating how things will affect him.

Mark refers to me in terms of "the old Sarah." The Sarah he fell in love with. The Sarah attached to him at the hip. The Sarah filled with fun, always up for an adventure, his partner in crime. He reminds me of how little I resemble "the old Sarah." The Sarah who didn't have breast cancer.

Cancer has a way of taking a lifetime and condensing it into cliff notes... For example, we live in a 2-bedroom townhouse that we bought when Natalie was a baby and we had only planned on living in for a few years. Then, Mark had an opportunity to start his taxi business, which he runs from our home (phones ringing constantly, people in and out), so moving has been pushed further and further into the future. When we only had 2 children and I had energy to run around and go places all the time- it didn't seem like a big deal. Now, we spend more time at home, our world is smaller and some days I feel like it is closing in around me. Mark is aiming for his "dream" home in 5 years. I feel an urgency to simply move into a bigger house now. (Effexor?) This week, I cried uncontrollably as I explained to my mother that I just want my children to have rooms of their own, rooms that we would decorate together, where they would remember me tucking them in at night, where they would think of cookies we've baked in the kitchen, or snuggling under blankets to watch a movie together in the living room or exploring nature in our own backyard. A place where memories of me will be with them, around every corner... even if I am not there. (Effexor?) This week, I screamed swear words and tried to spray Mark with the kitchen sink sprayer as he critiqued me from across the room. (Effexor?) I am short-tempered and lashing-out or I am empty and hopeless. (Effexor?)

For today, it's easiest to just point at Effexor.
So for today, Effexor gets the finger.

Tuesday, February 15, 2011

The Doctor is In 5 cents

Within the past year and a half of my life:  I was diagnosed with metastatic breast cancer.  I have had tests and scans, radiation and chemotherapy,  and various medications for pain, nausea, etc.   I have gone through a pregnancy and given birth.  I had a total hysterectomy and am going through menopause.  I am married, the mother of three daughters, and I have now returned to work to ensure our health insurance coverage. 

I face my fear of pain and death and living day to day with cancer as it comes.  I have been touched by the compassion and love of friends, family and even strangers.  I have laughed and cried and when I felt the darkest clouds surrounding me, swallowing me- I have tried with all my being to hold the golden thread of joy close to my heart.  To choose joy.  To not let anyone or anything keep my joy from manifesting in this world...

The people close to me have their own fears and sadness and anger and sometimes these feelings sneak up on them unexpectedly.  In a flash of cold sweat, they suddenly picture their world without me in it and nothing- absolutely nothing- makes sense anymore.  

I know this is hard for Mark. His attention is pulled in many directions as he focuses on his business and our family and all the things about me that have changed.  He feels a deep sense of loss and an uncertain future.  I love him.  He gets the best of me and the worst of me.  I want to promise him I will be with him forever, but I can't lie and it frustrates us both.  Instead of focusing on cancer, I just want to keep going, keep living.  Cancer does not get all of me- every thought, every feeling, every breath.  I want to move, find a new car, enjoy my family as we had planned.  I want Mark to get on the same page and just live with me.

Mark scans the drug websites, convinced my feelings and thoughts and behaviors are a side effect of some drug or another or a dreaded combination of drugs.  My mom says she would need help to make sense out of all the things we have been through in such a short period of time- Amy agrees, anyone would.  We talk to Dr. Laudi.  We talk to a counselor.  We talk to a psychiatrist...  Mark feels they are distracted by my bald head- that I have tricked them somehow and he feels they have all ganged up on him.

The psychiatrist listened to me complain about our townhouse that doubles as a business site and my car that is falling apart and how Mark is oblivious to this.  He listened to Mark complain about how unreasonable my demands are and Mark's theories about hormones and drugs. 

The psychiatrist said frankly, "If I were in Mark's shoes and my wife were in yours, I would do anything I could to make things happen for her."

He was surprised that in all our complaints- neither Mark nor I mentioned cancer. 

Cancer is not the problem.  Cancer is my reality.  There is no Sarahwithoutcancer.  As hard as it is- Mark needs to accept this.  As Mark spends his time going off on tangents- searching and seeking and pointing at me and drugs, filling the pot to overflowing with possibilities- he fails to consider one obvious thing- himself. 

That's a hard thing to stare down.  Believe me, I know.  I am not led willingly to that mirror myself, but I have learned that most of life's answers are in the reflection- the problem and the solution are within the image before me, the image before each of us.

It says a lot about Mark- his strength, his character-  that he let down his defenses and let the words reach him and sink in.  It takes a brave soul to make the choices he has made- to risk breaking his own heart by loving- not the Sarahwithoutcancer or the Sarahwithcancer- but Sarah.  To choose to be my partner in this life, my partner in joy- to let go, to let it be, to just keep living....

Thursday, February 3, 2011

Many mothers

Today, Olivia had her well-baby check up. She is almost 7 months old and weighs a whopping 11 lbs 13 oz. She smiled and laughed at every face she saw. I filled out the development forms, but hesitated when I got to the parts that asked about Olivia's diet. She is technically not breast-fed by me, but being bottle fed donor breastmilk. I discussed this with Olivia's pediatrician, a woman from Korea. She said people in this country are uptight about sharing breastmilk, but it is a common practice in many parts of the world. She told me a story about her husband. When he was a baby his mother could not produce enough breastmilk for him on her own, so another breastfeeding woman she knew would come each day to help feed him. To this day, her husband says he has 'two mothers'.

Three shots, and a heel stick to check Olivia's Hgb, ended our visit. I held her close and wiped our tears.

Later, I rocked Olivia to sleep feeding her a bottle of milk. Milk from one of Olivia's many mothers...