Last night, Mark woke me up because I was wheezing. This morning, I watched Natalie and Larissa get ready for school from the sofa. Just sitting there, I couldn't catch my breath.
I kept reminding myself that I have pneumonia. This is just part of it. Mark kept reminding me that I had been on antibiotics for a week now and things should be getting better.
Mark called Dr. Laudi, who wanted to see me right away, because he thinks I am having an adverse reaction the the chemo I have been on since ---. Gemcitiabine. I hear Mark's voice from August 2010, "Cancer doesn't end up killing people, the chemo and drugs do the killing."
At Dr. Laudi's office, my blood pressure was up 190s/100s, my heart rate was 140-150s, and my oxygen sats were dropping to 77%. My chest Xray was all whited out. Mark pulled up a picture of my cheat XRay from 2 years ago and the difference was startling. An ECHO showed fluid build-up around my heart, so my heart was working harder. I have fluid in my lungs and pitting edema in my ankles. When hearts and lungs try hard to compensate, but they are less efficient and stressed under these conditions. Cardiac or respiratory failure is a real concern. Cardiac or respiratory failure means death.
This is not my day to die.
I tell Dr. Laudi that I don't have time for all this. I have things to do. I have a family. I have to go to work this weekend. He tells me that's not happening. I had EKG to check the condition of my heart, ultrasounds of my legs and arms to look for blood clots and I was started on Lasix. Mark ran home to get me some supplies, grab my nook and computer while I was admitted to Mercy Hospital for observation. Mark dropped off Olivia with my sister, Amy. Later, he went home to pick up Natalie and Larissa and let Amore out. My mother wanted to come and spend the night with me, but I told her I was fine.
My night nurse was training in another nurse. He came in around 7:00 PM and asked if I would like an 'innapropriate movie' to watch. This caught me off guard and made me laugh! Why not?
Saturday, March 3, 2012
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.
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
Learning
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.
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...
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: http://minnesota.cbslocal.com/2011/03/29/minn-moms-using-facebook-to-share-breast-milk/ .
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: http://minnesota.cbslocal.com/2011/03/29/minn-moms-using-facebook-to-share-breast-milk/ .
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.
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?..."
www.startribune.com/lifestyle/118256519.html
To Olivia's many Mothers,
Thank you for sharing your precious gifts.
We are forever grateful.
I love how the story starts:
"What's the kindest thing a stranger has ever done for you?..."
www.startribune.com/lifestyle/118256519.html
To Olivia's many Mothers,
Thank you for sharing your precious gifts.
We are forever grateful.
Subscribe to:
Posts (Atom)