This Memorial Day Weekend was great but, too short. On this weekend we celebrated birthday's, honored our countries military personnel, and reflected on the rich life of my late father (a career military man).
Back to work in the morning, I am still in pain from the surgery but there is nothing to watch on TV.... (i.e. I like Drew Carey I think he is funny but he is a dry, robotic host when he is taping the Price is Right).
Monday, May 31, 2010
Folklife!
Every year over Memorial Day weekend, I celebrate the start of summer at the Northwest Folklife Festival. I usually go to the big Balkan participatory dance on Sunday night and of course sing with my choir, Dunava.
This year, being on chemotherapy made going to Folkife complicated. On Friday I was supposed to meet a friend from California for dinner, but I had a crappy day and it was too cold and wet to go out again. On Saturday I felt fine in the morning but crashed hard in the evening. On Sunday evening I felt better, and asked Rik to take me to the Balkan dance. Although I limited my participation to the slow and easy dances, it was still great to be there, to hear the music, see my friends, and get to dance a little bit.
Today started with morning minyan for my dad's yahrzeit. Afterwards I needed a break and tried to nap, in the hope that I'd feel well enough to hear Dunava sing. Although I couldn't sleep, that rest helped me to get out again at noon. We went to Folklife, bought some lunch, and the food also helped give me energy.
I sat in the main court at the Center House, eating my lunch and watching the dancers. There was Cajun music playing, and I felt out of breath, tired, and hungry. I had my own small "pity party." I thought I would never get to dance again and was so jealous of all the people having a good time without a care in the world (or so they seemed to me).
But we went down to the theatre where Dunava was to perform, met up with friends, found a seat, and I began to feel better. Maybe it was the food kicking in, Maybe it was getting to listen to friends sing beautiful Balkan songs. Either way, my funk lifted and by the time Dunava came on stage, I was back to feeling my glass is half-full.
In the end, despite my hitting a wall after only 2-3 hours of activity, I still was able to do everything I normally do at Folklife. The sun came out after a long, cold, wet weekend. And that felt good.
This year, being on chemotherapy made going to Folkife complicated. On Friday I was supposed to meet a friend from California for dinner, but I had a crappy day and it was too cold and wet to go out again. On Saturday I felt fine in the morning but crashed hard in the evening. On Sunday evening I felt better, and asked Rik to take me to the Balkan dance. Although I limited my participation to the slow and easy dances, it was still great to be there, to hear the music, see my friends, and get to dance a little bit.
Today started with morning minyan for my dad's yahrzeit. Afterwards I needed a break and tried to nap, in the hope that I'd feel well enough to hear Dunava sing. Although I couldn't sleep, that rest helped me to get out again at noon. We went to Folklife, bought some lunch, and the food also helped give me energy.
I sat in the main court at the Center House, eating my lunch and watching the dancers. There was Cajun music playing, and I felt out of breath, tired, and hungry. I had my own small "pity party." I thought I would never get to dance again and was so jealous of all the people having a good time without a care in the world (or so they seemed to me).
But we went down to the theatre where Dunava was to perform, met up with friends, found a seat, and I began to feel better. Maybe it was the food kicking in, Maybe it was getting to listen to friends sing beautiful Balkan songs. Either way, my funk lifted and by the time Dunava came on stage, I was back to feeling my glass is half-full.
In the end, despite my hitting a wall after only 2-3 hours of activity, I still was able to do everything I normally do at Folklife. The sun came out after a long, cold, wet weekend. And that felt good.
Remembering Dad
Today is the second yahrzeit for my father, Sheldon Charles Cohen, zichrono l'vracha, may his name be a blessing.
In his memory, last night I lit a 24-hour yahrzeit candle and this morning we went to morning minyan. Since it was a Monday, in addition to the regular short service, we read from the Torah. And as the daughter of a Kohen, I was honored with the first aliyah. (Miracle of miracles, there were four Kohanim AND a Levi present!) At the end of the Torah service, mourners have an opportunity to remember their loved ones in the prayer El Maleh Rachamim (God full of compassion). Although my still-weakened left arm prevented me from holding the Torah, I was able to chant the prayer.
Our shul also gives mourners the chance to say a few words. Here's what I said about my dad:
My father enlisted in the US Army in 1945, at the tail end of World War II, just before he turned 18. Given that his yahrzeit fell on Memorial Day this year, I think he'd want me to tell you a little bit about his service to our country.
For my dad, the war was an opportunity for a very young man to see the world. Serving in the Army Corps of Engineers as a truck driver, he once ran out of gas somewhere in France. Having learned a little bit of French, he hiked back to the closest village, where he made a telephone call. He said to the operator, in his Bronx-accented French, “Le militaire American.” The operator didn’t understand his accent, so he repeated “Le militaire American.” Eventually they connected him and the Army came by with more gas.
Because my dad loved to feed people, after the brief service, Rik and I offered everyone a nosh of bagels and cream cheese, orange juice, and a special treat my father loved -- key lime tarts.
PICC Infection is Receding
Last night around 8:00 pm, D and I took a good look at my PICC arm and the infection had receded below the line drawn on by arm my Onc. And this morning it’s even further back of the line. Yippee.
Yesterday throughout the day, the whole PICC line area on my upper arm was itchy … really itchy. And it got itchier into the evening … symptoms of healing? I couldn’t resist massaging the area a little bit with the tips of my fingers for some relief.
Hopefully I can get back on chemo this Friday. Fingers and toes are crossed.
Sunday, May 30, 2010
Changing your view
The call came out for tips and tricks, so here are two tips that helped me get through chemo and after:
ONE.
When I was in chemo I mostly spent time in one or two neighborhood cafes--writing my blog, reading, working. A nice way to get a cheap vacation, though, is to go to a different part of town and hang out, either in a coffee house you haven't been to, or, if the weather's nice and you feel like it, on the streets and sidewalks.
I think people like going to new cafes and restaurants partly just to feast their eyes. Oh, of course, there's our obsessive focus on the minutiae of food and on finding the top 10 [fill in the blank]s, a trend that was spawned, supposedly by the start and rise of city magazines, and that helps us forget the polis, and the great world around us, but there is something in us that loves a new place. If we had all reached enlightenment maybe we wouldn't need this stimulation; home or our monk's cell would be enough, but until then, it's nice to get out every once in a while. A change of scenery can liven you up. It does something to the brain. Don't ask me what. Today we went to the National Museum of Mexican Art to see two exhibits. One was small and unfortunately partly amateurish, about the kidnapping, torture and murder of more than 500 women in Ciudad Jaurez. Both of us liked this piece, Broken Dreams by RocĂo Caballero, very much:
The other exhibit was so so well-done and interesting, on Mexican and American muralists, and how they influenced each other. There were even three pieces by Jackson Pollock, including the painting above. Afterwards L and I walked around and went to a restaurant where we split a burrito. It felt like we were in a different country, or at least in the Mission in San Francisco. It's still hard for me to explain to people why I can write more when I go to Ragdale or another artist colony. Part is the expectation. Part is the change of scenery. The brain knows it's elsewhere.
I love this museum because it's very small and good and has a great gift shop. In the fall it's got altars for Dia de los Muertos, and you can watch people make sugar skulls.
TWO. If you're a woman in Chicago who's been treated for cancer in the last year, you can get five free massages and five free spa visits at Thousand Waves Spa. If you're in chemo you won't want to use the hot tub because you're more susceptible to germs and infections, but you can use the sauna and steamroom and sit in the relaxation room and read magazines and drink tea. It's all very lovely and quiet. And free. Though if you can afford to, it's nice to tip the massage therapists, who are students.
Emotions, Stress and Disease
I will soon be attending a professional seminar. As a nurse, I am often invited to various seminars, but none intrigue me enough to pay the cash. But recently I was invited to a seminar that truly intrigues me; Emotions, Stress and Disease.
As a member of the cancer community, I have become truly intrigued by the emotional turmoil cancer creates in us. Unlike other illnesses where you are treated, recover and move on, cancer is different. It does not just cause physical turmoil, but emotional turmoil as well...and I've come to learn that often the physical recovery is much easier than the emotional recovery, the living with fear and uncertainty after physical healing.
I also believe that biology plays a big part in our emotional well-being. Brain chemistry changes bring on many mental illnesses. I worked for a bit on a psych unit and was blown away by the changes in patients who were put on the right meds. For some, it wasn't counseling that cured them; it was the effect of medication on their brain chemistry. I'd taken care of schizophrenics who were talking to imaginary people and who were totally "out of it" who a week later on the right medications seemed totally normal. The same with many bipolar patients. Childhood and life stresses and circumstances play a part for many with mental illness, but I came to learn biology and chemistry are also involved.
Those of us with cancer get a double whammy...we are subject to terrifying life circumstances, but I'm sure our brain chemistry is also affected by the many physical stressors we face; surgery, chemo, dietary changes, activity changes etc. We have overwhelming physical and psychological stressors all at once. Most of us women who have appendiceal cancer also lose our ovaries and are thrust into surgical menopause, our hormonal balance changes drastically overnight.
The seminar I will be attending addresses both the physical and emotional components of stress and its effects on our brain chemistry and biology, also how our body chemistry and biology play into our emotions. It will deal with the neurology of emotions, neurotransmitters and stress hormones including adrenalin, cortisol and ACTH.
I think it will be really interesting...will keep you posted with what I learn at the June 10th seminar!
As a member of the cancer community, I have become truly intrigued by the emotional turmoil cancer creates in us. Unlike other illnesses where you are treated, recover and move on, cancer is different. It does not just cause physical turmoil, but emotional turmoil as well...and I've come to learn that often the physical recovery is much easier than the emotional recovery, the living with fear and uncertainty after physical healing.
I also believe that biology plays a big part in our emotional well-being. Brain chemistry changes bring on many mental illnesses. I worked for a bit on a psych unit and was blown away by the changes in patients who were put on the right meds. For some, it wasn't counseling that cured them; it was the effect of medication on their brain chemistry. I'd taken care of schizophrenics who were talking to imaginary people and who were totally "out of it" who a week later on the right medications seemed totally normal. The same with many bipolar patients. Childhood and life stresses and circumstances play a part for many with mental illness, but I came to learn biology and chemistry are also involved.
Those of us with cancer get a double whammy...we are subject to terrifying life circumstances, but I'm sure our brain chemistry is also affected by the many physical stressors we face; surgery, chemo, dietary changes, activity changes etc. We have overwhelming physical and psychological stressors all at once. Most of us women who have appendiceal cancer also lose our ovaries and are thrust into surgical menopause, our hormonal balance changes drastically overnight.
The seminar I will be attending addresses both the physical and emotional components of stress and its effects on our brain chemistry and biology, also how our body chemistry and biology play into our emotions. It will deal with the neurology of emotions, neurotransmitters and stress hormones including adrenalin, cortisol and ACTH.
I think it will be really interesting...will keep you posted with what I learn at the June 10th seminar!
In a jam
Yesterday, my crazy husband was off running 21 miles, training for a marathon he's running in a few weeks. This meant that WCK and I had the morning all to ourselves, so I decided to take her on a mother-daughter date to Jiggle Jam. Jiggle Jam is a huge children's music festival held every Memorial Day weekend at Crown Center in Kansas City. It was founded by local celebrity Mr. Stinky Feet. We'd never been to Jiggle Jam before, and I'm not sure why, because It. Was. Awesome. Mr. Stinky Feet, is there anything you can't do?
There were a bunch of those inflatable bouncy things, and a rock-star tent where the kids could play little instruments, dress up in rock-star clothes, and get photos taken inside a photo booth. We took off our shoes and dangled our toes in one of the Crown Center fountains, sat under a tree and ate Minsky's pizza and a dish of chocolate Italian Ice. We stopped by one of the vendor booths and bought a pair of green fairy wings. We made crafts and played with bubbles. We saw several different shows, including a Funky Mama concert (she's the female equivalent of Mr. Stinky Feet), a really cool puppet show, and a really great show put on by Martin City Melodrama. The theme of the show was fairy tales from all around the world where the princess/female character is the hero of the story and saves the day herself instead of waiting for Prince Charming. We both really enjoyed it.
There was only one dark moment on our otherwise great day: The kiddie train.
Jiggle Jam featured a tiny train for the kids to ride that made a very slow, very tiny, approximately 30-second loop right in front of Crown Center. WCK saw a photo of the train on the Jiggle Jam web site and proclaimed that she had to ride the train. We saw the train in person, and she proclaimed that she had to ride the train. I purchased a $2 ticket for said train, we waited in line for the train, we got ready to board the train, and then ....
WCK proclaimed the train was "scary."
Never mind that WCK has ridden trains like this a million times in the past. Never mind that just last weekend at a birthday party, WCK rode a fully grown, real-live horse all by herself. Never mind that WCK is now a preschool graduate and everyone else who had calmly boarded the train without assistance was approximately 2 years old. This tiny little train was suddenly the Most Terrifying Thing in the World.
After two different attempts to board the train, I was becoming irritable, mostly because I'd paid $2 for a 30-second train ride, which, if you think about it, is like charging $240 an hour to ride this dang train. I said that if WCK was going to be too tired and cranky to board the train, then we were leaving and going home right that second, even though that meant that WCK would not be allowed to change into her swimsuit and play on the Crown Center spraygrounds. The chance to play on the spraygrounds had been WCK's lifelong dream, ever since she first heard about it, approximately two hours earlier that day. (Mother-of-the-Year-Award Committee, please contact me to get my home address for the mailing of my plaque.)
Finally, the train conductor suggested that I walk/jog alongside the train and hold WCK's hand. WCK agreed to these terms. So, there I was, doing the Jiggle Jam Walk of Shame alongside the miniature train, wondering how I'd explain to paramedics about a little train running over my feet, enduring the quiet stares of judgement from the two-year-olds who rode without hand-holding assistance. Fortunately, my walk/jog only lasted 30 seconds. Then WCK announced she wanted to go again. Um. No.
But we were able to put the train ugliness behind us, and WCK changed into her swimsuit and played in the fountain, which, I have to say, looked like the most fun thing in the whole entire world. By the end, we were both too worn out to stay for the big Stinky Feet concert at the end of the day. As we headed toward the car, I asked WCK about her favorite part of Jiggle Jam.
"The train!" she said.
Yeah.
There were a bunch of those inflatable bouncy things, and a rock-star tent where the kids could play little instruments, dress up in rock-star clothes, and get photos taken inside a photo booth. We took off our shoes and dangled our toes in one of the Crown Center fountains, sat under a tree and ate Minsky's pizza and a dish of chocolate Italian Ice. We stopped by one of the vendor booths and bought a pair of green fairy wings. We made crafts and played with bubbles. We saw several different shows, including a Funky Mama concert (she's the female equivalent of Mr. Stinky Feet), a really cool puppet show, and a really great show put on by Martin City Melodrama. The theme of the show was fairy tales from all around the world where the princess/female character is the hero of the story and saves the day herself instead of waiting for Prince Charming. We both really enjoyed it.
There was only one dark moment on our otherwise great day: The kiddie train.
Jiggle Jam featured a tiny train for the kids to ride that made a very slow, very tiny, approximately 30-second loop right in front of Crown Center. WCK saw a photo of the train on the Jiggle Jam web site and proclaimed that she had to ride the train. We saw the train in person, and she proclaimed that she had to ride the train. I purchased a $2 ticket for said train, we waited in line for the train, we got ready to board the train, and then ....
WCK proclaimed the train was "scary."
Never mind that WCK has ridden trains like this a million times in the past. Never mind that just last weekend at a birthday party, WCK rode a fully grown, real-live horse all by herself. Never mind that WCK is now a preschool graduate and everyone else who had calmly boarded the train without assistance was approximately 2 years old. This tiny little train was suddenly the Most Terrifying Thing in the World.
After two different attempts to board the train, I was becoming irritable, mostly because I'd paid $2 for a 30-second train ride, which, if you think about it, is like charging $240 an hour to ride this dang train. I said that if WCK was going to be too tired and cranky to board the train, then we were leaving and going home right that second, even though that meant that WCK would not be allowed to change into her swimsuit and play on the Crown Center spraygrounds. The chance to play on the spraygrounds had been WCK's lifelong dream, ever since she first heard about it, approximately two hours earlier that day. (Mother-of-the-Year-Award Committee, please contact me to get my home address for the mailing of my plaque.)
Finally, the train conductor suggested that I walk/jog alongside the train and hold WCK's hand. WCK agreed to these terms. So, there I was, doing the Jiggle Jam Walk of Shame alongside the miniature train, wondering how I'd explain to paramedics about a little train running over my feet, enduring the quiet stares of judgement from the two-year-olds who rode without hand-holding assistance. Fortunately, my walk/jog only lasted 30 seconds. Then WCK announced she wanted to go again. Um. No.
But we were able to put the train ugliness behind us, and WCK changed into her swimsuit and played in the fountain, which, I have to say, looked like the most fun thing in the whole entire world. By the end, we were both too worn out to stay for the big Stinky Feet concert at the end of the day. As we headed toward the car, I asked WCK about her favorite part of Jiggle Jam.
"The train!" she said.
Yeah.
Saturday, May 29, 2010
Universe, can you please cut me some slack?
April 15, 2010 was the 2nd anniversary of my bilateral mastectomy. It was also the day that our son, Veo Hieu Liam Worrall-Soriano was born and then died. Veo had a birth defect called anencephaly, which causes the skull to not form and therefore, the baby would never have a chance to survive. I was admitted to Women's hospital to give birth to Veo and to say goodbye. When labour was induced, I felt the familiar pains of childbirth, but with the added pain of knowing that all the dreams we had for Veo would never come true. Each contraction that passed through me was another permanent wound. I knew that before long, we would be able to hold Veo, but only for a little while.
Throughout our stay at Women's, the staff--from the nurses to the social worker to the spiritual counsellor--helped us in every single way they could, and we will always be so thankful for that support. But as we came home, we felt the immense sadness and void fill up the space around us. We spent time together, just the two of us, and we also thought about how we would help Chloe and Mylo deal with the loss of the baby brother they were so excited to have in their lives.
Even though they are only 5 and 6 years old, my children have gone through so much in terms of death and loss and illness, starting with my cancer diagnosis in 2007. When they were 2 and 3 years old, they watched me transform from a healthy young mom who could easily fulfill all their needs into a sick, bald woman who spent a lot of time in bed. They watched me give myself white blood cell booster injections, and they watched me recover from my surgery, with drains hanging out of me. They watched me get better again. Then they endured their father's and my separation, trying to cope with now living between two households and understanding why grown ups behave the way they do. Now this--a baby that they never saw but hugged through my belly, a baby whom they had all these plans to play with, a baby for whom they drew pictures and made up stories--this baby they wanted--he was dead. Why? My heart broke when Chloe asked me, "Mama, can we have a baby that doesn't get sick and die?"
It's been over a month since Veo's birth and death, and we're still feeling the loss. Chloe and Mylo have resumed their lives as usual, but now and then they ask me about Veo. They ask to see the tiny footprints the hospital gave us, they ask to burn some incense for him. The hospital gave us teddy bears to give to the kids, and the funeral home gave us a stuffed elephant--all as reminders of Veo. Every night the kids are with me, they hug those stuffies and remember their brother.
Now, I sit alone in my apartment. The kids are with their dad. Anton is going to be by his mother's side as she takes her final breath. It is quiet, but I'm feeling very unsettled.
Yesterday, I had a check-up with my oncologist. She wants to give me a full-body PET scan to make sure I am truly cancer-free. However, in order for me to have that done, I have to not be pregnant. And now, more than ever, Anton and I really want to have a baby. A fear struck me this morning as I thought about the PET scan: what if it shows I have cancer, and I have to go through chemo or whatever, and then I can never have kids again? I really want to say, forget the PET scan until we have the baby we want so much. But I know--I have to make sure I am good to go.
I fucking hate cancer. It keeps getting in my way.
Why can't we have this life we want so much--to be with Chloe and Mylo and their baby brother/sister, to live quietly and in the service of society? The last three years of my life have been devastation upon devastation. Yes, there has been so much that has gone right. I still have two amazing children, and I am in love with the most amazing man. Why, then, does life keep dishing out all these challenges that make me want to scream?
Throughout our stay at Women's, the staff--from the nurses to the social worker to the spiritual counsellor--helped us in every single way they could, and we will always be so thankful for that support. But as we came home, we felt the immense sadness and void fill up the space around us. We spent time together, just the two of us, and we also thought about how we would help Chloe and Mylo deal with the loss of the baby brother they were so excited to have in their lives.
Even though they are only 5 and 6 years old, my children have gone through so much in terms of death and loss and illness, starting with my cancer diagnosis in 2007. When they were 2 and 3 years old, they watched me transform from a healthy young mom who could easily fulfill all their needs into a sick, bald woman who spent a lot of time in bed. They watched me give myself white blood cell booster injections, and they watched me recover from my surgery, with drains hanging out of me. They watched me get better again. Then they endured their father's and my separation, trying to cope with now living between two households and understanding why grown ups behave the way they do. Now this--a baby that they never saw but hugged through my belly, a baby whom they had all these plans to play with, a baby for whom they drew pictures and made up stories--this baby they wanted--he was dead. Why? My heart broke when Chloe asked me, "Mama, can we have a baby that doesn't get sick and die?"
It's been over a month since Veo's birth and death, and we're still feeling the loss. Chloe and Mylo have resumed their lives as usual, but now and then they ask me about Veo. They ask to see the tiny footprints the hospital gave us, they ask to burn some incense for him. The hospital gave us teddy bears to give to the kids, and the funeral home gave us a stuffed elephant--all as reminders of Veo. Every night the kids are with me, they hug those stuffies and remember their brother.
Now, I sit alone in my apartment. The kids are with their dad. Anton is going to be by his mother's side as she takes her final breath. It is quiet, but I'm feeling very unsettled.
Yesterday, I had a check-up with my oncologist. She wants to give me a full-body PET scan to make sure I am truly cancer-free. However, in order for me to have that done, I have to not be pregnant. And now, more than ever, Anton and I really want to have a baby. A fear struck me this morning as I thought about the PET scan: what if it shows I have cancer, and I have to go through chemo or whatever, and then I can never have kids again? I really want to say, forget the PET scan until we have the baby we want so much. But I know--I have to make sure I am good to go.
I fucking hate cancer. It keeps getting in my way.
Why can't we have this life we want so much--to be with Chloe and Mylo and their baby brother/sister, to live quietly and in the service of society? The last three years of my life have been devastation upon devastation. Yes, there has been so much that has gone right. I still have two amazing children, and I am in love with the most amazing man. Why, then, does life keep dishing out all these challenges that make me want to scream?
Unscheduled Clinic Visit
Last night the redness from my infection crossed the line drawn in by the Onc. And it’s more painful. D wanted me to call the clinic immediately but I just couldn’t bring myself to do it. I really don’t want the PICC line pulled out of my arm just yet.
This morning I finally gave in and called the clinic as instructed by my Onc. I asked if I could come in and have a nurse look at it. The triage nurse said we don’t normally take walk-in traffic but … if I wanted to come in, she’d come down and have a quick peek. Excellent …that is all I want.
D and I headed straight over there. The nurse had a look and said … well, even tho the infection has crossed the line it doesn’t look too bad yet … besides it takes two or three days for the antibiotic to kick in and since I had only been taking them for just less than two days, we could probably wait a bit. “Keep a close eye on your temperature.” she said and off we went.
Perfect … I could now enjoy the weekend. To celebrate, we went out for breakfast.
Healthy Spirits: New Releases
The newness.
1. Lakefront Fixed Gear American Red Ale
2. Lakefront "Big Easy" Imperial Maibock Lager
3. Sudwerk Imperial Pilsner
4. Stone Sublimely Self-Righteous is back!
5. Big Sky Buckin' Monk Triple
6. Bridgeport Highland Ambush (Barrel Aged Scotch Ale)
7. Anderson Valley Summer Solstice now available in cans!
cheers,
dave hauslein
beer manager
415-255-0610
1. Lakefront Fixed Gear American Red Ale
2. Lakefront "Big Easy" Imperial Maibock Lager
3. Sudwerk Imperial Pilsner
4. Stone Sublimely Self-Righteous is back!
5. Big Sky Buckin' Monk Triple
6. Bridgeport Highland Ambush (Barrel Aged Scotch Ale)
7. Anderson Valley Summer Solstice now available in cans!
cheers,
dave hauslein
beer manager
415-255-0610
Praise for Swedish Medical Center
I finally wrote to Dr. Rodney Hochman, chief medical officer at Swedish Medical Center to praise the truly excellent care I received on the night of March 29, when I fell and dislocated my elbow. He responded the same day and he liked my blog!
And here's my original email (sent at 6 AM when I had insomnia yesterday):
Dear Jill,
Your email this morning was a great way to start the day. I will make sure that the group in the emergency department hears about your experience. I usually try to spend a least a half day a week at one of our clinical sites to see our people in action. I continue to be impressed with the quality and compassion exhibited by our people. Your blog and Rik's photos were also very insightful. Regards, Rod
And here's my original email (sent at 6 AM when I had insomnia yesterday):
After the Passover seder, around 10 PM on March 29, I slipped and fell on wet pavement, injured my arm and was taken by ambulance to Swedish First Hill, where I received truly excellent care. The ED doctor (who had just left his Passover seder) and nurses all treated me as though I was a family member. They listened to and honored my requests, addressed my significant pain, diagnosed a dislocated elbow and attempted to put the bones back into the joint. When that proved unsuccessful, at around 3 AM they called an orthopedic specialist. I was fortunate to go under
the care of Dr. Bill Wagner, who successfully reset my arm and has been a caring, compassionate physician ever since.
I passed a long night at the ED and I only wish I remembered the names of the staff who helped me so this letter could go into their personnel files. Swedish is fortunate to have such employees!
Swedish is always my hospital of choice.
A rough day
Yesterday was the first time in seven+ years that I felt disabled.
Between more blood pressure issues that caused stress and anxiety while I was driving (in the rain); frustration with my slow-to-recover left arm and how little I could do at yoga; insomnia, and general fatigue from the cold and wet weather, I actually felt handicapped.
It was mostly the dislocated elbow. But the cancer and treatment side effects added so much more to my whole day that I was full up to my eyes and fed up with everything. Even taking Ativan and only doing yoga breathing didn't help enough.
By the times yoga class was done, and I had eaten something, I realized that I should have turned around as soon as I felt poorly and gone home. But no, I'm too stubborn for that. I had to go to yoga, get some lunch, go to the market AND pick up RIk after school as planned. At least I had the presence of mind to cancel our dinner plans at Folklife.
I was such a poor judge of my own stamina and wellbeing that I took a second 0.5 mg Ativan in the car while waiting for Rik and let him drive. He was great. He carried in all the groceries, put them away, made up the bed with fresh sheets and let me take a nap there while he also fed and walked the dogs.
I slept more than two hours and awoke feeling more like myself, was able to prepare dinner and eat it, wrap my arm with the lymphedema bandaging, and even a read a little. Sleep really is an excellent healer for me and I am sure my middle of the night insomnia had a lot to do with my feeling lousy all day long.
Now the goal is not only to recognize when I feel poorly but to stop and listen to my body, then to go home if that's what's needed. Wish me luck on this. I get my stubbornness from both parents.
Between more blood pressure issues that caused stress and anxiety while I was driving (in the rain); frustration with my slow-to-recover left arm and how little I could do at yoga; insomnia, and general fatigue from the cold and wet weather, I actually felt handicapped.
It was mostly the dislocated elbow. But the cancer and treatment side effects added so much more to my whole day that I was full up to my eyes and fed up with everything. Even taking Ativan and only doing yoga breathing didn't help enough.
By the times yoga class was done, and I had eaten something, I realized that I should have turned around as soon as I felt poorly and gone home. But no, I'm too stubborn for that. I had to go to yoga, get some lunch, go to the market AND pick up RIk after school as planned. At least I had the presence of mind to cancel our dinner plans at Folklife.
I was such a poor judge of my own stamina and wellbeing that I took a second 0.5 mg Ativan in the car while waiting for Rik and let him drive. He was great. He carried in all the groceries, put them away, made up the bed with fresh sheets and let me take a nap there while he also fed and walked the dogs.
I slept more than two hours and awoke feeling more like myself, was able to prepare dinner and eat it, wrap my arm with the lymphedema bandaging, and even a read a little. Sleep really is an excellent healer for me and I am sure my middle of the night insomnia had a lot to do with my feeling lousy all day long.
Now the goal is not only to recognize when I feel poorly but to stop and listen to my body, then to go home if that's what's needed. Wish me luck on this. I get my stubbornness from both parents.
Friday, May 28, 2010
Healthy Spirits: Beer of the Month Club June 2010...
...is now available for pick-up!
Also, a few people haven't picked up their BOTM selections from the last 2 months. Please retrieve them within the month to avoid having them shipped.
cheers,
dave hauslein
beer manager
415-255-0610
Also, a few people haven't picked up their BOTM selections from the last 2 months. Please retrieve them within the month to avoid having them shipped.
cheers,
dave hauslein
beer manager
415-255-0610
PICC Line Infection Update
Yesterday throughout the day and into the evening, the area above my PICC line became redder and redder. My arm became increasingly sore with the redness. I especially felt a weird throbbing sensation in the vein on up my shoulder where the PICC line is located.
Around 8:00pm D and I looked closely at my arm, we even took a picture of it and concluded that the redness had moved up to the go-no-go line that my Onc had drawn on my arm. But the redness had not crossed the line so I did not have to go to the clinic. And my temperature was still normal.
We took another picture this morning and compared the two. There’s a small color change for the better in the area. It is less red and the soreness is way down. The throbbing is gone too. I’ve got my fingers crossed that the antibiotic is now kicking in.
Here is the picture taken last night showing the infection and my PICC line.
Healthy
I just read a post on one of my favorite blogs, Confessions of a Mother, Lawyer, and Crazy Woman. She wrote about being in an exercise class and the instructor asking if anyone had any health problems (ML&CW has a brain tumor). I was going to leave a comment for her about my own experience, but it got really long, so I decided to turn it into a blog post instead.
I joined a gym about a year and a half ago. (By the way, I am still really good about going to my strength-training classes two or three times a week. See a previous post about lifting weights with some very strong older ladies.) When the front desk lady was filling out all of my gym-joining paperwork, she said, "You're healthy, right? You're not on any meds?" I paused, wondering how I was going to phrase everything. I feel like one can't just blurt out, "I have cancer," without following up with a lengthy explanation of how one is not going to collapse and die at the gym right that second. It needed to sound very breezy and casual, something like, "Um, yeah, well, OK, see, I have this rare form of blood cancer? Like, a kind that only 70-year-old men get? But I've never had any symptoms, and my form of it is really slow-moving, so I'm only on medication some of the time, and they're just pills, not, you know, 'make-you-go-bald' chemo or anything, and right now I'm on a super low dose, with the idea that I'll probably be completely off the drugs in six months. And, no, I'm not in remission, but that is TOTALLY OK." I knew I'd have to add that last part in, because some people get really freaked out when you say you're not in remission.
Just as I was getting ready to launch into my casual, breezy, I'm-not-going-to-die explanation, I noticed that the front-desk lady had already written "H E A L T H Y" in giant letters across the bottom of the form. Well, gee. How sad would it be to watch her scribble out "H E A L T H Y" and replace it with, "Rare form of 70-year-old-man cancer, but claims she is not going to die, despite the fact that she's not even in remission."
"Yeah," I said, "I'm healthy."
I joined a gym about a year and a half ago. (By the way, I am still really good about going to my strength-training classes two or three times a week. See a previous post about lifting weights with some very strong older ladies.) When the front desk lady was filling out all of my gym-joining paperwork, she said, "You're healthy, right? You're not on any meds?" I paused, wondering how I was going to phrase everything. I feel like one can't just blurt out, "I have cancer," without following up with a lengthy explanation of how one is not going to collapse and die at the gym right that second. It needed to sound very breezy and casual, something like, "Um, yeah, well, OK, see, I have this rare form of blood cancer? Like, a kind that only 70-year-old men get? But I've never had any symptoms, and my form of it is really slow-moving, so I'm only on medication some of the time, and they're just pills, not, you know, 'make-you-go-bald' chemo or anything, and right now I'm on a super low dose, with the idea that I'll probably be completely off the drugs in six months. And, no, I'm not in remission, but that is TOTALLY OK." I knew I'd have to add that last part in, because some people get really freaked out when you say you're not in remission.
Just as I was getting ready to launch into my casual, breezy, I'm-not-going-to-die explanation, I noticed that the front-desk lady had already written "H E A L T H Y" in giant letters across the bottom of the form. Well, gee. How sad would it be to watch her scribble out "H E A L T H Y" and replace it with, "Rare form of 70-year-old-man cancer, but claims she is not going to die, despite the fact that she's not even in remission."
"Yeah," I said, "I'm healthy."
Insomnia
There are times when I just can't sleep. Even after taking a sleeping pill, I occasionally awake in the middle of the night. I woke up at 3 AM and after tossing and turning, taking an ativan for pain, and practicing my yoga breathing, I was still alert an hour later.
I don't feel particularly stressed. If anything, the reverse: my hblood pressure feels normal; there's a long holiday weekend coming up which I get to celebrate at the NW Folklife Festival; I have no chemo on Monday to interfere with that enjoyment; and I was able to get tickets to a local production of one of my favorite pieces of musical theatre, Leonard Bernstein's Candide.
This is when the internet helps. I can post to my blog, commiserate with my online list serv, check email, and even shop (if so inclined). What I can't do is sleep.
I hope that when I lay down again in a few minutes, my mind will stop spinning its wheels and I will relax and fall asleep.
I don't feel particularly stressed. If anything, the reverse: my hblood pressure feels normal; there's a long holiday weekend coming up which I get to celebrate at the NW Folklife Festival; I have no chemo on Monday to interfere with that enjoyment; and I was able to get tickets to a local production of one of my favorite pieces of musical theatre, Leonard Bernstein's Candide.
This is when the internet helps. I can post to my blog, commiserate with my online list serv, check email, and even shop (if so inclined). What I can't do is sleep.
I hope that when I lay down again in a few minutes, my mind will stop spinning its wheels and I will relax and fall asleep.
Thursday, May 27, 2010
Patent application involving miRNAs and CSCs
Methods and Compositions Involving miRNAs in Cancer Stem Cells, Patent Application WO/2010/056737. [FriendFeed entry].
One of the applicants is Mirna Therapeutics, Inc.
One of the applicants is Mirna Therapeutics, Inc.
PICC Line Infection
This morning I went in for blood work to confirm I was OK for chemo tomorrow. When it came time to see the nurse, we discussed the side effects from last week’s infusion. I mentioned I had chills on Friday and Saturday, I had a sore acidic belly and a small dry cough up until a couple of days ago.
I also mentioned something else … this morning I noticed that my PICC line area was sore and my skin was reddish and warm to the touch. She looked at it asking if maybe I had a skin reaction to something. I said I didn’t think it was that because it was just too sore. I mentioned to her that the muscles in both arms and shoulders were usually weak and often sore but this is different. A second nurse had a look and thought it might be an infection.
The first nurse called my Onc in to have a look. He concluded that this was indeed an infection and rescheduled my chemo to next week Friday. He also put me on the antibiotic Cephalexin 500 mg for 7 days. Then he took out his pen and drew a line on my arm at the edge of the redness and said … if the redness goes beyond this line … to call the clinic immediately.
So now I’m back to checking my temperature 4 times a day for the next week at least. …Zaraza!
Wednesday, May 26, 2010
Alma Mater
The editor of my college alumni magazine asked me to write an essay about going public. I did, and now it's out. Read it here.
A note to any of you who are insecure about your writing: As I write more and more, I get more and more insecure. I wrote three versions of the piece and sent them all in to the editor. This is not really professional behavior, but it was all I could do.
See, even with Effexor and generic Buspar, I still have a residual amount of anxiety.
Onc update
I saw the oncologist today and he says the following:
Heart issues might have been caused by IV Zofran. We looked at alternatives and they all carry the same 5% or less risk for cardiac side effects. Since I've had so little nausea with the Abraxane, my next chemo will be Abraxane only and no anti-nausea pre-meds. I did not notice any heart irregularities when taking oral Zofran for a queasy tummy after the first two rounds.
At my request I get next Monday off from chemo so I can celebrate the Memorial Day holiday by attending the NW Folklife Festival and hearing my choir Dunava sing. There was no way to do both, so I am glad Dr. G listened to me! He is very supportive of my need for a high quality of life.
My blood pressure was again slightly elevated but he was not worried. My heart rate was steady. I am having some shortness of breath when walking a couple of blocks but hopefully that will disappear in the coming days.
He ordered a chest/abdominal/pelvic CT. I haven't had a scan in just over one year.
And finally the big question: How long will I be on the Abraxane? When I have a good response plus two months. What's a good response? Reduced lesions as seen on a scan. (Hence next week's scans to have some sort of a baseline.)
Heart issues might have been caused by IV Zofran. We looked at alternatives and they all carry the same 5% or less risk for cardiac side effects. Since I've had so little nausea with the Abraxane, my next chemo will be Abraxane only and no anti-nausea pre-meds. I did not notice any heart irregularities when taking oral Zofran for a queasy tummy after the first two rounds.
At my request I get next Monday off from chemo so I can celebrate the Memorial Day holiday by attending the NW Folklife Festival and hearing my choir Dunava sing. There was no way to do both, so I am glad Dr. G listened to me! He is very supportive of my need for a high quality of life.
My blood pressure was again slightly elevated but he was not worried. My heart rate was steady. I am having some shortness of breath when walking a couple of blocks but hopefully that will disappear in the coming days.
He ordered a chest/abdominal/pelvic CT. I haven't had a scan in just over one year.
And finally the big question: How long will I be on the Abraxane? When I have a good response plus two months. What's a good response? Reduced lesions as seen on a scan. (Hence next week's scans to have some sort of a baseline.)
Firestone Parabola in stock, read carefully
Just received a very small shipment of Firestone Parabola. We will be releasing them as follows:
-Beer of the Month members may call and reserve one bottle
-Everyone else is first come first serve with one bottle limit
These are going to go fast, good luck
Nate
New shul prez
On Sunday our synagogue, Congregation Beth Shalom, held its annual meeting and I was elected president of the board for the next two years. There were an unusually high number of members present. The business included a report from the outgoing president, a salute to volunteers and recognition of the volunteer of the year, by-laws revision, approval of the slate of directors and of the annual budget.
I know all the above would be kind of tiring for people to listen to for more than two hours, so I decided that instead of being another "talking head," I would sing my comments. I rewrote the words to the same Serbian drinking song that I performed at the Dunava concert. Here's the full text. I tried to post a video of my performance but was unsuccessful. However, it sure got people revved up about the synagogue!
I know all the above would be kind of tiring for people to listen to for more than two hours, so I decided that instead of being another "talking head," I would sing my comments. I rewrote the words to the same Serbian drinking song that I performed at the Dunava concert. Here's the full text. I tried to post a video of my performance but was unsuccessful. However, it sure got people revved up about the synagogue!
I must begin by ‘fessing up. Many of you know that I recently started another chemotherapy to treat my metastatic breast cancer. Today I appear before you in very traditional Jewish garb: the tichel. Usually worn by married Orthodox women as a sign of modesty, it also suits women who have lost their hair to chemo!
Now on to the CBS presidency. When Steve Perlmutter and Ron Schneeweiss asked me to consider becoming the president of Beth Shalom, I thought long and hard and spoke to many people about what I should do. Rabbi Borodin gave me truly excellent advice. She said, “Do it because it brings you joy.”
In the Cohen family, we have a tradition of celebrating happy occasions by writing song parodies. We take a familiar melody, maybe from a Broadway musical, and write new lyrics to reflect our simchah.
Some of you know I have spent more than half my life dancing and singing the music of the Balkans. I’ve always wanted to find crossover between my love of Balkan tunes and Jewish life.
So in the spirit of my family tradition of re-writing songs, and taking the rabbi’s advice about finding joy in being your president, with some help from a friend on the accordion, I have rewritten a Serbian drinking song called Evo Banke Cigane Moj. I think you will want to sing along with these new words!
// Beth Shalom, it is our home
A Jewish home for you and me //
// Rabbi leads us on our way
Members donate money, time and say,
“Beth Shalom, it is our home
A Jewish home for you and me.” //
// Lift your glass to communal success
In ‘68 we started to progress //
// Eating, learning, praying in a group
People thrive in our communal soup.
Beth Shalom, it is our home
A Jewish home for you and me //
La la la
Beth Shalom, it is our home
A Jewish home for you and me!
Zen Tow
This is from my breast-cancer group rowing coach, used with permission. She's now in South Africa but will be back soon. And in two years plans to row around the world.
Tonight I left practice to attend CRU practice in Skokie (the new coaching job I took so I can do ROW full time), and on the way there I kept thinking about what a beautiful night it was....and how I'm so blessed to finally have the opportunity to do something I love for a living--and how I just got off the water...and the practice was great, and I felt like I could really help them as a team, and then I thought about Monday night and how amazing it was....and blah blah blah, heart was full and I was smiles all around.
Then my car went crazy and wouldn't accelerate--and all the lights started flashing and I had to pull off the road because it wouldn't continue. So I stopped, and pulled over. I started freaking out because it wouldn't start--and of course a million things start running through my mind. Mostly worrying about money (which is so stupid), about how I was going to pay for any repair to my car with leaving my job and taking a pay cut to do ROW (I just found out great news though--I'm totally eligible for food stamps!!! :) -- anyway-- I got really upset. The tow truck comes by and he goes to start my car--and it turned right over! So we laugh about how I could have done something silly with the gas or something like that. So I get in the car again, he gives me his card (I find out his name is Zee) and I thank him for being so nice and patient. I start driving down the highway again and it stops in the middle of the expressway--just before the Diversey exit, there's cars going 60 mph all around me. Everyone is honking and going crazy, I'm freaking out and trying to get my car to start again. I tried for about 5 minutes. I call Zee--he says he'll be there in ten minutes. I'm not going to last ten minutes! It's crazy--semis are freaking out I keep trying--it finally turns over. So I get off the highway as fast as I can (at the Ogden exit) and the car stops, again. So I call Zee, I'm in tears, scared and feel like a total GIRL at this point.
Zee comes to pick me up and he sees I'm upset. He asks me why I'm upset, I said "I just quit my job and I can't afford to fix anything and...." he asks me, "why did you quit your job?" and I said, "to do something I love", and he says "Jenn, you have no good excuse to be crying right now"....the tow truck man from HEAVEN! So he tows my car to a place up north I know and trust but they're lot is full and I can't leave my car there so he drives me all around the city--we spend an hour and a half in the car together. He tells me his life story--about how his mom just had a mastectomy and how she is battling cancer. I tell him about ROW, we talk about life and how it's so funny--that you can get so upset about the stupidest things and that here I am freaking out--when I'm healthy, and happy--and I love what I do. I get to help people and wake up and enjoy my job every day (starting Monday!). He told me about how he used to work for Jiffy Lube and how he started this towing business because he wanted to help people (which I never would have thought about that way). We talked about how it takes guts to do something you love--that you have to believe in yourself and take a leap. We both commended one another for being brave in our entrepreneurial pursuits--I'm telling you--a real heart to heart--who knew? He told me more about his mom and we talked about how breast cancer touches everyone. Everyone! When we got to my house, I was better off that I started (well, without a car), but I was so thankful for him and the two hours in his truck. I don't know what's wrong with my car--but I'll try to get it in tomorrow...and that's all I can do!
I invited Zee and his mom to join us at our fundraiser in September as our guests--I hope that he comes!! Anyway--I'm sitting here crying because I'm so happy that I had something happen that made me see what really matters--and that everything is going to be okay. You can't plan everything and you can't control everything-and life is too short to hold on to everything that doesn't matter--especially too short to spend any energy worrying about things so much you can't see the big picture right in front of your face.
A Renewal Retreat for Women with Breast Cancer
As taken from Image Reborn's Living Beyond Breast Cancer website...
Our mission is to provide no-cost healing retreats to women who have been diagnosed with breast cancer. The focus is on encouraging women to reclaim their sense of personal power and to strengthen them in their journey toward healing on all levels and living fully.
Image Reborn's Living Beyond Breast Cancer retreat program is designed and facilitated by a highly professional staff with backgrounds and experience in addressing the special concerns of women with breast cancer.
We offer weekend retreats in a serene mountain setting in Park City, Utah.
Tuesday, May 25, 2010
Cancer Girl on location
An exciting development here at Cancer Girl Headquarters: The International Myeloma Foundation contacted me about a week or so ago. They are going to be flying Jay and me to Chicago in a couple weeks and putting us up in the Hard Rock Hotel so that I can attend the American Society of Clinical Oncology annual meeting and blog about it.
I say, it's about dang time this fatal disease started paying off for me. A free hotel room! Aren't you all so jeaaaalous? Don't yoooooou want a fatal disease? Well, tough. It's my fatal disease, and you can't have it!
Seriously, though, I am a little bit nervous about reporting on this meeting. I'm hoping that the good people at the IMF have thoroughly reviewed my blog and understand that it consists of 99 percent NKOTB tributes and photos of Bon Jovi with his shirt off, and approximately 1 percent actual scientific fact. The titles of the presentations contain words like "carfilzomib" and "panobinostat" and "intravenous bortezomib", just to name a few. I'm assuming these are actual words, although they could easily be words that oncologists invented to make their meetings sound important. "If we say it's a meeting about, oh, say, 'carfilzomib', no one will ever guess that we're really sitting in the conference room drinking margaritas! Ha ha!"
Don't worry, clinical oncologists. I promise I will never reveal your secrets. I will write things like, "The talk about carfilzomib was very scientific and serious, and I learned tons of facts, and I swear there were no margaritas involved." You will want me at your meeting every year.
I say, it's about dang time this fatal disease started paying off for me. A free hotel room! Aren't you all so jeaaaalous? Don't yoooooou want a fatal disease? Well, tough. It's my fatal disease, and you can't have it!
Seriously, though, I am a little bit nervous about reporting on this meeting. I'm hoping that the good people at the IMF have thoroughly reviewed my blog and understand that it consists of 99 percent NKOTB tributes and photos of Bon Jovi with his shirt off, and approximately 1 percent actual scientific fact. The titles of the presentations contain words like "carfilzomib" and "panobinostat" and "intravenous bortezomib", just to name a few. I'm assuming these are actual words, although they could easily be words that oncologists invented to make their meetings sound important. "If we say it's a meeting about, oh, say, 'carfilzomib', no one will ever guess that we're really sitting in the conference room drinking margaritas! Ha ha!"
Don't worry, clinical oncologists. I promise I will never reveal your secrets. I will write things like, "The talk about carfilzomib was very scientific and serious, and I learned tons of facts, and I swear there were no margaritas involved." You will want me at your meeting every year.
Healthy Spirits: New Releases
First off all, I will address the PARABOLA issue. It didn't come in today. It will (probably) come in tomorrow. Ugh. When it comes there will be a post on the blog. Only people in Beer of the Month Club will be able to reserve bottles, and there will definitely be bottle limits. We are only getting a few bottles of this one and we want to make sure everyone has a shot at it. I wish you all the best of luck.
We received a couple great bottles today, which you will find below.
1. R.I.P.A. on Rye-He'Brew's Bittersweet Lenny DIPA aged in Sazerac Rye Barrels
2. Port Brewing Anniversary-10% Imperial IPA
3. Lost Abbey Tumblers and Stemmed Glassware!
4. Einbecker Mai Ur-Bock-Delicious, sessionable German seasonal
5. Gavroche Red-French Biere De Garde
Buffalo Belgian Bitter-A Hoppy Belgian Strong Ale from the makers of the fantastic Buffalo Stout
cheers,
dave hauslein
beer manager
415-255-0610
We received a couple great bottles today, which you will find below.
1. R.I.P.A. on Rye-He'Brew's Bittersweet Lenny DIPA aged in Sazerac Rye Barrels
2. Port Brewing Anniversary-10% Imperial IPA
3. Lost Abbey Tumblers and Stemmed Glassware!
4. Einbecker Mai Ur-Bock-Delicious, sessionable German seasonal
5. Gavroche Red-French Biere De Garde
Buffalo Belgian Bitter-A Hoppy Belgian Strong Ale from the makers of the fantastic Buffalo Stout
cheers,
dave hauslein
beer manager
415-255-0610
Chemo Cycle One – Day Five
Here is an update on my side effects.
I’m now waking up nearly every morning with a headache above the sinus area. It sort of disappears after morning coffee but comes back in the afternoon a bit stronger. I’m going to start taking Benadryl today and see if that gives some relief.
I’m finding my stomach has become a bit finicky too, with some burning acid indigestion. So I’ve pulled out some medication I had when I was on Taxotere … it’s called Metoclopramide and works like a darn. I’ve also started coughing a bit again. Don’t know if that is fluid around my lungs or not.
Generally I’m just starting to feel low on energy.
On a positive note, my finger tips and toes aren’t peeling from the Xeloda anymore. The edema in my right arm is down too which means it isn’t bothering me as much. As far as the swelling in my feet goes, I have minimal if any left.
And finally, I need a hair cut… can you believe that? Tho my hair is still thin from the Taxotere … it’s long enough where it requires some super model shaping and style.
Monday, May 24, 2010
Chemo today
I had another relatively easy chemo day, although it started out with a little frustration. I was supposed to be on a three-week on, one-week off chemo cycle, but missed a treatment on May 10 due to low counts. By the original plan, today was supposed to be the week off, and therefore, although Dr. G's office had set up today's appointment, he had not entered orders into the electronic system. Fortunately, the chemo nurse was able to reach him by pager while he was rounding in the hospital, and he entered the orders quickly.
From there the routine went a bit more smoothly. Down to the lab to have blood drawn. Back up to the treatment center; get settled in a chair. Find out that the lab hadn't drawn a creatinine sample to test liver function, and because this was a Zometa day, it was an important test which Dr. G had not placed in his original lab orders. (He wrote it later, after I had already been to the lab.) The chemo nurse confirms that he wants the creatinine test, takes another tube of blood and hand carries it down to the lab. She makes another call to Dr. G to get his okay for me to have both Abraxane and Zometa.
At my request, the chemo nurse took my blood pressure three times (before, during and after chemo) and used a stethoscope to listen to my heart for a full minute. My BP was at my usual low normal each time and my heart was beating 72 times/minute. She recommended that if I experience more high blood pressure or other heart issues to call Dr. G and be seen right away or go to the emergency room for an EKG.
The day began at the cancer institute at 8:15 AM. At 10:15, we started the Zofran pre-medication. At 10:30, Abraxane. And at 11:30, Zometa. I was done by 12:40 and felt good enough that we went to lunch with a friend who came for a visit. It's only five hours, and I have all the time in the world, right?
From there the routine went a bit more smoothly. Down to the lab to have blood drawn. Back up to the treatment center; get settled in a chair. Find out that the lab hadn't drawn a creatinine sample to test liver function, and because this was a Zometa day, it was an important test which Dr. G had not placed in his original lab orders. (He wrote it later, after I had already been to the lab.) The chemo nurse confirms that he wants the creatinine test, takes another tube of blood and hand carries it down to the lab. She makes another call to Dr. G to get his okay for me to have both Abraxane and Zometa.
At my request, the chemo nurse took my blood pressure three times (before, during and after chemo) and used a stethoscope to listen to my heart for a full minute. My BP was at my usual low normal each time and my heart was beating 72 times/minute. She recommended that if I experience more high blood pressure or other heart issues to call Dr. G and be seen right away or go to the emergency room for an EKG.
The day began at the cancer institute at 8:15 AM. At 10:15, we started the Zofran pre-medication. At 10:30, Abraxane. And at 11:30, Zometa. I was done by 12:40 and felt good enough that we went to lunch with a friend who came for a visit. It's only five hours, and I have all the time in the world, right?
CSC news update 2010-05-24
For links to recent news items about CSC, visit this [Topsy] page. An example of a news item that has received attention in the past week:
Markers on xenograft-initiating cells in estrogen receptor-negative breast cancer http://bit.ly/9Xhzbp. Hashtag: #cancerSC. [PubMed Citation]
PICC Line Dressing Change
Last Saturday I went in to the clinic and had my PICC line inspected and redressed. It’s usually only a weekly event but because I had it inserted just the day before, the Doc just wanted to make sure everything was in order.
So while the nurse had the dressing off, I thought I’d take a snapshot of the PICC in my left arm.Pretty cool huh? … NOT!
Sunday, May 23, 2010
Video - William Li: Can We Eat To Starve Cancer?
William Li offers a new way of thinking about treating cancer and other diseases. Anti-angiogenesis uses drugs or substances to stop tumors from making new blood vessels.
William Li speaks on eating cancer-fighting foods that cuts off the supply lines and beats cancer at its own game.
Priorities
Early this morning -- very, very, very, very early this morning -- WCK was in the bathroom down the hall, and I heard her yelling for me in all-capital letters. "MOMMY! MOMMY! I NEEEEEEEED YOU!!!! MOMMMM-MAAAAY!!" (Repeat about 11 times) I thought maybe she'd fallen in or something, so I managed to crawl out of bed and stagger down the hall with my eyes closed. Until I've consumed a Diet Coke, nearly every task is performed in a staggering, closed-eye manner.
I arrived at the bathroom to discover she was perfectly fine, but she faced a moral dilemma and needed some advice.
"I need to flush, but I don't want the noise to wake up Daddy!"
Yeah.
I arrived at the bathroom to discover she was perfectly fine, but she faced a moral dilemma and needed some advice.
"I need to flush, but I don't want the noise to wake up Daddy!"
Yeah.
Saturday, May 22, 2010
Increased blood pressure from zofran?
A friend from a support group forwarded this link to me.
It could be that my recent increased blood pressure etc. is due to side effects from the intravenous zofran I received last Monday before getting Abraxane. You can be sure I will tell the chemo nurses about this and get them to ask Dr. G to not give me IV zofran next time.
Given that I've had so little nausea, and that not for several days after each chemo, perhaps I don't need any anti-emetic pre-medications before chemo at all. I will ask about this as well.
The good news is that my blood pressure seems lower today. Although I haven't measured my BP, my heart is beating more normally.
Zofran Side Effects - for the Professional
Cardiovascular
Rarely and predominantly with intravenous ondansetron, transient ECG changes including QT interval prolongation have been reported.
General
Flushing. Rare cases of hypersensitivity reactions, sometimes severe (e.g., anaphylaxis/anaphylactoid reactions, angioedema, bronchospasm, shortness of breath, hypotension, laryngeal edema, stridor) have also been reported. Laryngospasm, shock, and cardiopulmonary arrest have occurred during allergic reactions in patients receiving injectable ondansetron.
It could be that my recent increased blood pressure etc. is due to side effects from the intravenous zofran I received last Monday before getting Abraxane. You can be sure I will tell the chemo nurses about this and get them to ask Dr. G to not give me IV zofran next time.
Given that I've had so little nausea, and that not for several days after each chemo, perhaps I don't need any anti-emetic pre-medications before chemo at all. I will ask about this as well.
The good news is that my blood pressure seems lower today. Although I haven't measured my BP, my heart is beating more normally.
Cycle One - Day Two
I had my Vinorelbine just before lunch yesterday and late in the afternoon I started getting a bit of a head ache … felt a bit of nausea too. Around supper time I got the chills. I just couldn’t warm up so I hopped into bed with a couple of comforters on top of me. By the time D came to bed, I had warmed up and ended up sleeping pretty well through the night.
This morning I woke up with a stuffy head … but overall I’m doing good.
Friday, May 21, 2010
Lick the Ewok
Jay's birthday is just a few days after WCK's birthday, so we've had two celebrations around here. Jay did not get to have his party at a bounce-up-and-down place, unfortunately, but his little party was still pretty fun. About a month or so ago, WCK was looking through an Oriental Trading Company catalog and found the perfect gift for Daddy. It was a grilling apron that you color yourself. I agreed to order it, along with some fabric markers. WCK faithfully worked on the apron nearly every day. Most days, she insisted on shutting herself away inside a top-secret location (the laundry room), just in case Jay happened to come home from work in the middle of the day. Yesterday, we finally revealed the apron. Jay was very happy with it. I think Jay is going to wear it all the time, like even to important business meetings and church:
Then WCK decided that Jay needed a party with a Star Wars theme. We bought Star Wars plates and napkins, and then we baked a cake and decorated it with Star Wars figures. It was originally going to be just an Ewok cake, but then, as we tend to do with cakes around here, we ended up getting a little nuts. Don't worry: All of the figures took nice, long baths in hot, soapy water before they were placed on the cake:
If you'll look closely, you'll notice that three of the Ewoks are about waist-deep in cake, the poor fellas. As I pulled off all of the figures, I turned to Jay and said a sentence I've never said before: "Would you like to lick the Ewok?"
Then WCK decided that Jay needed a party with a Star Wars theme. We bought Star Wars plates and napkins, and then we baked a cake and decorated it with Star Wars figures. It was originally going to be just an Ewok cake, but then, as we tend to do with cakes around here, we ended up getting a little nuts. Don't worry: All of the figures took nice, long baths in hot, soapy water before they were placed on the cake:
If you'll look closely, you'll notice that three of the Ewoks are about waist-deep in cake, the poor fellas. As I pulled off all of the figures, I turned to Jay and said a sentence I've never said before: "Would you like to lick the Ewok?"
For the record, he did not want to lick the Ewok. Party pooper.
PICC Procedure and Chemo Infusion
This morning I had my PICC line inserted. A doctor first attempted to use the same PICC vein used last year but after two attempts he said there was too much resistance and we needed to find another vein. So he moved to the cephatic vein which is located more to the front of my upper arm. That one went in like a breeze. Besides the needle for the freezing … I really didn’t feel a thing.
After changing back into my street clothes, the nurse wheeled me to Daycare for my Vinorelbine infusion. The actual infusion was only about ten minutes but between that, the flush and the liter of saline, I was outta there in just over an hour.
My chemo cycle is a little bit different this time too. It’s still a three week cycle but with treatments on two of the weeks and one week off... nothing like changing things up a bit.
Overall, I’m feeling fine … a bit woozy as I was getting the chemo but really nothing to complain about. I go in tomorrow for a dressing change on the PICC line just to make sure everything is fine … after that it will be weekly changes.
Healthy Spirits: Marin Bourbon Barrel Aged Dipsea Barleywine!
This annual release is usually exclusively sold at the brewery, but the brewer was kind enough to sell us a generous portion of the cases (only 100 cases were bottled).
The already awesome Old Dipsea is brewed with an English strain of Brettanomyces and then aged for 10 months in Heaven Hill bourbon barrels. HOO HA!
If you're in Beer of the Month Club, you will be getting one of these with your June selections. For everyone else, it is on the shelf. Come and get it!
cheers,
dave hauslein
beer manager
415-255-0610
The already awesome Old Dipsea is brewed with an English strain of Brettanomyces and then aged for 10 months in Heaven Hill bourbon barrels. HOO HA!
If you're in Beer of the Month Club, you will be getting one of these with your June selections. For everyone else, it is on the shelf. Come and get it!
cheers,
dave hauslein
beer manager
415-255-0610
Last blood test normal
Yesterday I spent a marathon afternoon dealing with high blood pressure issues. This morning the nurse practitioner called to say the last blood test (whose name I can't recall) also came back normal. I am okay and can enjoy my usual activities. The high blood pressure is likely a side effect from the Abraxane. Dr. G will be happy to see me next week as planned.
Whew!
Whew!
On condolences
I read this wonderful article, From Kind Words, Lessons on Condolences, in the New York Times -- how to express yourself, what to say, what not to say. It's eloquently written by a woman who recently lost her husband. The author, Jane Brody, has real insight into how to express oneself to a grieving friend and offers examples of what others wrote to her after her loss.
Being five rocks!
Wow, so much has happened in my fast-paced, whirlwind life since I last blogged. Laughter, tears, human drama. For starters, the super handsome guy got voted off American Idol. WHAT? Is this one of the signs of the apocalypse? I have not been following AI as closely as I have in the past -- we have one of those old-fashioned TiVos from, like, the 1880s or something that can only tape one show at once, and Lost is on at the same time as AI this season -- but I figured the super handsome guy would at least make the top two. Dreadlock Girl has been destined to win since day one.
Also, I got to the point in my Little House DVD collection where Mary goes blind. This feels like a huge milestone in my life. "PA!!! I CAN'T SEE!!!" So brilliant.
Let's see. I think that's about it. Oh, and when I looked away from the TV for a few seconds, I noticed that my only child had turned five.
FIVE!! That's right! FIVE!! When I started this blog, she was about nine months old. Five seems very old to me, maybe because I can clearly remember being five myself. We had another birthday-party extravaganza with 15 kids at one of those bounce-up-and-down places. I love the bounce-up-and-down place, and they always do such an excellent job with birthday parties. I think WCK should have her birthday party there until she turns 18. Can you have a high-school graduation open house at a bounce-up-and-down place? That would be sweet. The theme this year was, of course, Hannah Montana. WCK had a giant purple Hannah Montana cake and balloons, and she wore a t-shirt that said, "Being Five Rocks!" All of the kids got sunglasses.
The downside of turning five, though, is that you need to get shots. Lots and lots of shots. We did that yesterday. I think WCK handled the shots better than I did. She brought along her myeloma buddy, Hug-Hug, for moral support, and afterwards, I took her to McDonald's for a chocolate milkshake. WCK agreed to share the shake with me, and we drank it with two straws, like teenagers on a date in an old movie. It almost made the shot trauma worthwhile.
On the day after her birthday, I asked her if she liked being five. "Oh, it doesn't really feel any different," she said. "You know, like the day after I turned one? I still felt like I didn't have an age."
Also, I got to the point in my Little House DVD collection where Mary goes blind. This feels like a huge milestone in my life. "PA!!! I CAN'T SEE!!!" So brilliant.
Let's see. I think that's about it. Oh, and when I looked away from the TV for a few seconds, I noticed that my only child had turned five.
FIVE!! That's right! FIVE!! When I started this blog, she was about nine months old. Five seems very old to me, maybe because I can clearly remember being five myself. We had another birthday-party extravaganza with 15 kids at one of those bounce-up-and-down places. I love the bounce-up-and-down place, and they always do such an excellent job with birthday parties. I think WCK should have her birthday party there until she turns 18. Can you have a high-school graduation open house at a bounce-up-and-down place? That would be sweet. The theme this year was, of course, Hannah Montana. WCK had a giant purple Hannah Montana cake and balloons, and she wore a t-shirt that said, "Being Five Rocks!" All of the kids got sunglasses.
The downside of turning five, though, is that you need to get shots. Lots and lots of shots. We did that yesterday. I think WCK handled the shots better than I did. She brought along her myeloma buddy, Hug-Hug, for moral support, and afterwards, I took her to McDonald's for a chocolate milkshake. WCK agreed to share the shake with me, and we drank it with two straws, like teenagers on a date in an old movie. It almost made the shot trauma worthwhile.
On the day after her birthday, I asked her if she liked being five. "Oh, it doesn't really feel any different," she said. "You know, like the day after I turned one? I still felt like I didn't have an age."
Self Breast Exam - Why it's important and how to do it.
From their 20's onwards, women should know how their breasts look and feel normally and report any breast changes to their doctor as soon as they are found. Finding something new does not necessarily mean there is anything to worry about, but it is important to get any breast changes checked out.
Dr Chrysopoulo is a board certified plastic surgeon specializing in advanced breast reconstruction. He and his partners are in-network for most US insurance plans. Learn more about your breast reconstruction surgery options and connect with other breast reconstruction patients here. You can also follow Dr C on Twitter!
*****
Women are more likely to notice changes by performing a routine (say monthly), step-by-step approach to examining their breasts (see below).
The best time for a woman to examine her breasts is when the breasts are not tender or swollen. Women who examine their breasts should have their technique reviewed during their periodic health exams by their health care professional.
Women with breast implants can still also do BSE. Breast implants can actually push out the breast tissue and make it easier to examine. Women who are pregnant or breast-feeding should also examine their breasts regularly.
Women who have already had mastectomy and breast reconstruction should also consider routinely examining their new breasts for any new changes. Even though the natural breast tissue and breast cancer has been removed, it is still possible to develop a recurrence of the breast cancer (for example under the breast skin). BSE is often the first thing to alert patients to something new. Again, any new findings must be reported to a doctor straight away.
Women who have already had mastectomy and breast reconstruction should also consider routinely examining their new breasts for any new changes. Even though the natural breast tissue and breast cancer has been removed, it is still possible to develop a recurrence of the breast cancer (for example under the breast skin). BSE is often the first thing to alert patients to something new. Again, any new findings must be reported to a doctor straight away.
Women who decide not to do BSE should still be aware of the normal look and feel of their breasts and report any changes to their doctor right away.
How to examine your breasts (from the American Cancer Society's website)
- Lie down and place your right arm behind your head. The exam is done while lying down, not standing up. This is because when lying down the breast tissue spreads evenly over the chest wall and is as thin as possible, making it much easier to feel all the breast tissue.
- Use the finger pads of the 3 middle fingers on your left hand to feel for lumps in the right breast. Use overlapping dime-sized circular motions of the finger pads to feel the breast tissue.
- Use 3 different levels of pressure to feel all the breast tissue. Light pressure is needed to feel the tissue closest to the skin; medium pressure to feel a little deeper; and firm pressure to feel the tissue closest to the chest and ribs. It is normal to feel a firm ridge in the lower curve of each breast, but you should tell your doctor if you feel anything else out of the ordinary. If you're not sure how hard to press, talk with your doctor or nurse. Use each pressure level to feel the breast tissue before moving on to the next spot.
- Move around the breast in an up and down pattern starting at an imaginary line drawn straight down your side from the underarm and moving across the breast to the middle of the chest bone (sternum or breastbone). Be sure to check the entire breast area going down until you feel only ribs and up to the neck or collar bone (clavicle).
- There is some evidence to suggest that the up-and-down pattern (sometimes called the vertical pattern) is the most effective pattern for covering the entire breast, without missing any breast tissue.
- Repeat the exam on your left breast, putting your left arm behind your head and using the finger pads of your right hand to do the exam.
- While standing in front of a mirror with your hands pressing firmly down on your hips, look at your breasts for any changes of size, shape, contour, or dimpling, or redness or scaliness of the nipple or breast skin. (The pressing down on the hips position contracts the chest wall muscles and enhances any breast changes.)
- Examine each underarm while sitting up or standing and with your arm only slightly raised so you can easily feel in this area. Raising your arm straight up tightens the tissue in this area and makes it harder to examine.
- This procedure for doing breast self exam is different from previous recommendations. These changes represent an extensive review of the medical literature and input from an expert advisory group. There is evidence that this position (lying down), the area felt, pattern of coverage of the breast, and use of different amounts of pressure increase a woman's ability to find abnormal areas.
Dr Chrysopoulo is a board certified plastic surgeon specializing in advanced breast reconstruction. He and his partners are in-network for most US insurance plans. Learn more about your breast reconstruction surgery options and connect with other breast reconstruction patients here. You can also follow Dr C on Twitter!
*****
Thursday, May 20, 2010
A long day
Yesterday at the naturopathic doc my blood pressure was much higher than normal. Although he didn't comment or take action on it, I was worried. This morning I asked my physical therapist to check my BP and it had come down some but very much. Then I felt my heart racing. My support group recommended I call the onc, so I did.
Dr. G was out of the office for the Shavu'ot holiday but his staff squeezed me in to see the nurse practitioner. I had my port accessed and blood drawn to check my counts. An EKG. A chest xray. More blood drawn (second accessing of the port) for a special test. After 2.5 hours, and getting dressed and undressed four times (no easy trick in a pullover sweater when you are wearing a scarf to cover your baldness), NP Heather released me to go home, saying my EKG was normal, my counts are just where they were on Monday after chemo, and the chest xray looks fine. The other lab will take a few hours and they will get back to me with the results tomorrow.
Then I sat in rush hour traffic, hurrying to get home so that Rik could take the car to teach his evening class to graduation students in education. By the time I came home I'd been on the go for eight hours, had eaten lunch and an energy bar but was really hungry, and too stressed to do anything about it. Thankfully Rik had ordered a pizza and it was waiting when I walked in the door.
The upshot is that Abraxane is known to cause heart issues. Did anyone tell me? I can't remember. At least I reported all the symptoms, my medical team took action, and I'm in no immediate danger. More news no doubt next week after I see Dr. Goldberg.
I think I will take an ativan to de-stress.
Dr. G was out of the office for the Shavu'ot holiday but his staff squeezed me in to see the nurse practitioner. I had my port accessed and blood drawn to check my counts. An EKG. A chest xray. More blood drawn (second accessing of the port) for a special test. After 2.5 hours, and getting dressed and undressed four times (no easy trick in a pullover sweater when you are wearing a scarf to cover your baldness), NP Heather released me to go home, saying my EKG was normal, my counts are just where they were on Monday after chemo, and the chest xray looks fine. The other lab will take a few hours and they will get back to me with the results tomorrow.
Then I sat in rush hour traffic, hurrying to get home so that Rik could take the car to teach his evening class to graduation students in education. By the time I came home I'd been on the go for eight hours, had eaten lunch and an energy bar but was really hungry, and too stressed to do anything about it. Thankfully Rik had ordered a pizza and it was waiting when I walked in the door.
The upshot is that Abraxane is known to cause heart issues. Did anyone tell me? I can't remember. At least I reported all the symptoms, my medical team took action, and I'm in no immediate danger. More news no doubt next week after I see Dr. Goldberg.
I think I will take an ativan to de-stress.
The musical theatre holiday
I heard this great report on NPR's All Things Considered about the musical theatre holiday, Eliza Doolittle Day, while stuck in traffic this afternoon:
Speak Up And Celebrate 'Eliza Doolittle Day'
by Marc Acito
In Act 1 of My Fair Lady, Eliza Doolittle, the Cockney flower girl learning to speak like a lady, fantasizes about meeting the king. Of course, because it's a musical, she sings:
One evening the king will say, 'Oh, Liza, old thing — I want all of England your praises to sing. Next week on the twentieth of May, I proclaim Liza Doolittle Day.
Since I'm not Julie Andrews or Audrey Hepburn — or Marni Nixon, who sang for Audrey Hepburn in the movie, I'll spare you the rest. But suffice it to say, Eliza envisions all of England celebrating her glory. The only ones who recognize Eliza Doolittle Day, however, are music theater geeks like me. And while an evening of cocktails and show tunes sounds like fun, it's insufficient to mark the occasion because Eliza's message is all too relevant today.
You see, My Fair Lady is based on George Bernard Shaw's Pygmalion, and both pieces explore the ramifications of learning how to speak properly at a time when elocution was valued as a symbol of education and upward mobility.
Emphasis on the was.
Listen to Franklin Delano Roosevelt say, "The only thing we have to feah is feah itself," and it's almost inconceivable that ordinary Americans trusted someone who sounded like Thurston Howell III of Gilligan's Island. We are now in an age when Sarah Palin speaks to a quarter of the electorate, even though she talks like she's translating into Korean and back again. Even the rhetorically gifted President Obama has felt compelled to drop his g's while tryin' to sell health care reform.
Nowadays, soundin' folksy has become more important than sounding educated. As Eliza's teacher Henry Higgins says, "Use proper English, you're regarded as a freak." But our country's biggest competitors are learning proper English and, judging from all the Indian call centers, learning it quite well. Our country was built by people striving to move up, not dumbing down. So on this Eliza Doolittle Day, perhaps we should all take a moment to think before we speak.
Marc Acito is the author of How I Paid for College and Attack of the Theater People.
An evolving concept of CSCs in tumor biology
An evolving concept of cancer stem cells in tumor biology: a lecture (34:38 min) by Jeremy N Rich. Webcast of the initial presentation at an Educational Session on Cancer Stem Cells and Treatment Resistance, AACR 101st Annual Meeting, April 17, 2010. [FriendFeed entry].
Comment: Dr. Rich's research has a primary emphasis on Glioma Cancer Stem Cell and Brain Tumors. An example of a recent publication: Integrin Alpha 6 Regulates Glioblastoma Stem Cells by Justin D Lathia and 10 co-authors, including Jeremy N Rich, Cell Stem Cell 2010(May 7); 6(5): 421-32. [PubMed citation][FriendFeed entry].
Comment: Dr. Rich's research has a primary emphasis on Glioma Cancer Stem Cell and Brain Tumors. An example of a recent publication: Integrin Alpha 6 Regulates Glioblastoma Stem Cells by Justin D Lathia and 10 co-authors, including Jeremy N Rich, Cell Stem Cell 2010(May 7); 6(5): 421-32. [PubMed citation][FriendFeed entry].
Today’s Oncologist Visit
During last month’s visit my Onc said options were limited for treating the new growth on my liver. My choices were the study drug TK1258 or Vinorelbine (Naveltine). Because I don’t qualify for the study drug ... Vinorelbine is it.
Back then I didn’t have the courage to ask the Onc what he meant by… limited options.
Today I asked the question. How many options do I have left? He said if Vinorelbine fails, I will be put on compassionate care.
I asked if I could try DCA and he said he would look into it.
Wednesday, May 19, 2010
Remembering Charisse
I always think of my dear friend, Rabbi Charisse Kranes z"l, on the eve of Shavu'ot. I remember that evening in 1989 too clearly. My roommate and I had just finished a delicious dinner when the phone rang. It was a friend of Charisse's from California, calling to say that she had died that afternoon. (Of course, it was three hours later back east due to the time zone difference.)Charisse had been diagnosed with cancer four years earlier. Despite her advanced cancer, she continued to live life to the fullest. She started her first job as a congregational rabbi and was the first female rabbi on a pulpit here in Seattle. She married her grad school sweetie and they moved to California. When she could no longer work full time, she led services for the high holidays at various locations and later took on a part-time position.
We grew up together in the Zionist youth movement Young Judaea. In high school Charisse flirted off and on with increased religious observance. She used to bring a plastic toy Jeep to regional YJ conventions. During one particular weekend, she took the wheels off the Jeep so that we couldn't "drive" it and thus violate Shabbat while we played with it on Saturday afternoon.
Zichrona livracha: may her memory be a blessing.
Back in the Spa (Hospital)
Had a deviated septum & tonsillectomy procedure on Monday. It HURT I can't swallow so I was home for a few hours on Tuesday after getting out of the hospital....then ta da....back to the Spa so I can get my transplant meds by IV.
I should have never been released to go home only to return back to the ER 24 hours later, This was / is a huge FUCK-UP and COMMUNICATIONS breakdown between the post transplant doctors and the ENT Department.
I should have never been released to go home only to return back to the ER 24 hours later, This was / is a huge FUCK-UP and COMMUNICATIONS breakdown between the post transplant doctors and the ENT Department.
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