Day four of chemotherapy brought some relief for mum. Upon entering her room today I noticed that her mouth was bright red. It reminded me of the killer bunny in Monty Python. Apparently, she explained to me, she had felt well enough to enjoy two cherry popsicles.
http://www.youtube.com/watch?v=XcxKIJTb3Hg
Since mum hasn’t been eating much lately, she asked the doctor this morning “Should I worry about not eating anything?” (typical Jewish mother!) to which he replied “No, you’re on fluids so you’re okay for a couple of weeks.” Mum wittily replied “It’s a good thing I’m not the old lady in Monty Python’s spam restaurant because then I would have to eat spam with everything I order!”
http://www.youtube.com/watch?v=anwy2MPT5RE
Lucky for mum, dining services here have food without spam. The menu has many options, including kosher food from Kohn’s Kosher Butcher in St. Louis.
If you haven’t caught on by now, we are great Monty Python fans!
-Alana
Deborah's Daily
Monday, June 27, 2011
Sunday, June 26, 2011
The Wild West
The Lewis and Clark Expedition (1804-1806) is credited with the opening of the American West. Many of the significant points along the eastern edge of Lewis and Clark’s route are located in the St. Louis area. There is a statue of Lewis and Clark in the Mississippi River, right next to the Arch.
This past Wednesday, Daniel asked me “Mum, when do you start your chemo?” I responded, “High Noon tomorrow. Get your cowboy hat on and get ready for a wild ride, partner!” In actuality, I didn’t start my chemo until Friday. I got stood-up at the draw.
The reason for the delay is that one of the chemo drugs was not ready in time. Turns out there is a national shortage of daunorubicin, and it is back ordered until August! However, thanks to a variety of quick acting people who got a posse together, they were able to procure the last dose at Washington University for me. They put it in “lock-up” in a fridge on my floor where it was being guarded for my use. Thanks to everyone who helped me out in obtaining this drug!
Later in the day, one of my doctors said that the continual national shortage of a variety of drugs is definitely something to blog about. Most people are unaware, but once the patents expire the drug companies have less of an incentive to maintain sufficient product in the market. Please let your congressman know that we should maintain lobbying the drug companies to insure that medicine is available for all those who need it when they need it.
So, my chemotherapy treatment began on Friday and I am now into day three of a seven day regime. When I get my energy back, I'll blog about that.
This past Wednesday, Daniel asked me “Mum, when do you start your chemo?” I responded, “High Noon tomorrow. Get your cowboy hat on and get ready for a wild ride, partner!” In actuality, I didn’t start my chemo until Friday. I got stood-up at the draw.
The reason for the delay is that one of the chemo drugs was not ready in time. Turns out there is a national shortage of daunorubicin, and it is back ordered until August! However, thanks to a variety of quick acting people who got a posse together, they were able to procure the last dose at Washington University for me. They put it in “lock-up” in a fridge on my floor where it was being guarded for my use. Thanks to everyone who helped me out in obtaining this drug!
Later in the day, one of my doctors said that the continual national shortage of a variety of drugs is definitely something to blog about. Most people are unaware, but once the patents expire the drug companies have less of an incentive to maintain sufficient product in the market. Please let your congressman know that we should maintain lobbying the drug companies to insure that medicine is available for all those who need it when they need it.
So, my chemotherapy treatment began on Friday and I am now into day three of a seven day regime. When I get my energy back, I'll blog about that.
Thursday, June 23, 2011
Lotsa Helping Hands
Our dear friend Joe introduced us to the website “Lotsa Helping Hands” when he and his family were struggling with AML. As the site says, it was created to answer the question “What can I do to help?” If you are not familiar with what the site offers, access the link immediately below.
http://www.lotsahelpinghands.com/
Deborah and I are astounded how our friends and colleagues have come together to offer us support, food, and anything else we might require. I receive dozens of emails daily; Deborah, no doubt, receives many more than I. I hope that “Lotsa Helping Hands” will organize the community so that none of us are overwhelmed with kindness (and food!).
We have created the community called “Deborah’s Helping Hands.” Gene and Julia are helping us administer the site. I started the ball rolling by providing a few names and email addresses; Gene and Julia have done the rest. Many of you have already been invited to participate. If you haven’t already been invited and would like to help, please use the link immediately below:
https://lls.lotsahelpinghands.com/c/643312/login/?logout&language=en
If you are interested in becoming a member of this community, enter your email address to get started. You will then be prompted to provide your name, confirm your email, and provide a password so that you can access the site. If we know you (!!!), we will accept you into “Deborah’s Helping Hands.”
While I am in St. Louis with Deborah, the boys (and grandmas and other family members staying with us) will have a need for food (meal delivery or groceries), rides to appointments and soccer practices/games, shopping, and many other activities. I’m hoping that by posting our requests on online, we will get the help we need. When a request is posted (e.g., grocery shopping, bagel shopping, driving) you will get an email asking you to visit the community site. Sign on to the site to see how you can help. Remember, if you choose a task, please sign-up for it so that it isn't repeated by others. Of course, we welcome you to call our home anytime to ask if the boys need anything.
Once more, Deborah and I appreciate the kindness you have all shown us. We will need your help to get through this and I hope that this site, “Deborah’s Helping Hands” will allow us to do this.
http://www.lotsahelpinghands.com/
Deborah and I are astounded how our friends and colleagues have come together to offer us support, food, and anything else we might require. I receive dozens of emails daily; Deborah, no doubt, receives many more than I. I hope that “Lotsa Helping Hands” will organize the community so that none of us are overwhelmed with kindness (and food!).
We have created the community called “Deborah’s Helping Hands.” Gene and Julia are helping us administer the site. I started the ball rolling by providing a few names and email addresses; Gene and Julia have done the rest. Many of you have already been invited to participate. If you haven’t already been invited and would like to help, please use the link immediately below:
https://lls.lotsahelpinghands.com/c/643312/login/?logout&language=en
If you are interested in becoming a member of this community, enter your email address to get started. You will then be prompted to provide your name, confirm your email, and provide a password so that you can access the site. If we know you (!!!), we will accept you into “Deborah’s Helping Hands.”
While I am in St. Louis with Deborah, the boys (and grandmas and other family members staying with us) will have a need for food (meal delivery or groceries), rides to appointments and soccer practices/games, shopping, and many other activities. I’m hoping that by posting our requests on online, we will get the help we need. When a request is posted (e.g., grocery shopping, bagel shopping, driving) you will get an email asking you to visit the community site. Sign on to the site to see how you can help. Remember, if you choose a task, please sign-up for it so that it isn't repeated by others. Of course, we welcome you to call our home anytime to ask if the boys need anything.
Once more, Deborah and I appreciate the kindness you have all shown us. We will need your help to get through this and I hope that this site, “Deborah’s Helping Hands” will allow us to do this.
Wednesday, June 22, 2011
Hats!!! Inspired by Hats!!!
There's never a dull moment in mum's room, especially when it comes to discussing possible head coverings. These are a few possibilities we came up with over dinner:
Tuesday, June 21, 2011
New Digs
In case you did not know, the AML genome was sequenced at Washington University in 2008:
http://www.nature.com/nature/journal/v456/n7218/abs/nature07485.html
Here is another link to Wash U Divisions of Hematology:
http://hematology.im.wustl.edu/
Of course these first few days are settling in days before chemo starts later this week. I am thinking of hats, scarves, and colorful wigs; the "make-over" possibilities are endless! I may even go for a limited edition Cardinals cap that supports cancer research here at the Siteman Cancer Center - sorry Cubs fans!
Architecture is meant to promote healing and the Barnes Medical Campus which includes Children's Hospital, the St Louis College of Pharmacy, the Washington University Medical School, and the BJC Institute of Health at Washington University School of Medicine is a fabulous example. The Siteman Cancer Center is beautiful and does make one feel hopeful just to walk around and peer up into the airy space and beautiful glass walls.
Maya Lin, who designed the Vietnam Veterans War Memorial, designed the Ellen S. Clark Hope Plaza which sits in the center of the campus. The Clark family donated the plaza to celebrate Ellen Clark's indomitable spirit. This is a photo of the plaza at night:
http://cdn.archdaily.net/wp-content/uploads/2011/06/1307719182-ellenclarkhopeplaza.jpg
The lilies in the pool and gardens around the plaza were designed by the Missouri Botanical Garden. There is also an inscription from an Emily Dickensen poem "Hope":
"Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm.I've heard it in the chillest land, And on the strangest sea; Yet, never, in extremity, It asked a crumb of me."
So, until I start my chemo in a few days I can go out and about the plaza with my tell-tale patient wrist bands and yellow mask. It is a unique and pleasant environment inspiring the indomitable spirit within us all. To learn more about the plaza: http://news.wustl.edu/news/Pages/20854.aspx
Now, if you turn left from the corner of the building, away from the direction of the plaza, you walk right into the Central West End. The restaurants and bars are another wonderful asset within walking distance for care givers, family, and friends. A nurse did say that after work one day she went to meet some friends at a restaurant and low and behold one of the patients from her floor was at the bar - in his gown!
http://www.nature.com/nature/journal/v456/n7218/abs/nature07485.html
Here is another link to Wash U Divisions of Hematology:
http://hematology.im.wustl.edu/
Of course these first few days are settling in days before chemo starts later this week. I am thinking of hats, scarves, and colorful wigs; the "make-over" possibilities are endless! I may even go for a limited edition Cardinals cap that supports cancer research here at the Siteman Cancer Center - sorry Cubs fans!
Architecture is meant to promote healing and the Barnes Medical Campus which includes Children's Hospital, the St Louis College of Pharmacy, the Washington University Medical School, and the BJC Institute of Health at Washington University School of Medicine is a fabulous example. The Siteman Cancer Center is beautiful and does make one feel hopeful just to walk around and peer up into the airy space and beautiful glass walls.
Maya Lin, who designed the Vietnam Veterans War Memorial, designed the Ellen S. Clark Hope Plaza which sits in the center of the campus. The Clark family donated the plaza to celebrate Ellen Clark's indomitable spirit. This is a photo of the plaza at night:
http://cdn.archdaily.net/wp-content/uploads/2011/06/1307719182-ellenclarkhopeplaza.jpg
The lilies in the pool and gardens around the plaza were designed by the Missouri Botanical Garden. There is also an inscription from an Emily Dickensen poem "Hope":
"Hope is the thing with feathers That perches in the soul, And sings the tune without the words, And never stops at all, And sweetest in the gale is heard; And sore must be the storm That could abash the little bird That kept so many warm.I've heard it in the chillest land, And on the strangest sea; Yet, never, in extremity, It asked a crumb of me."
So, until I start my chemo in a few days I can go out and about the plaza with my tell-tale patient wrist bands and yellow mask. It is a unique and pleasant environment inspiring the indomitable spirit within us all. To learn more about the plaza: http://news.wustl.edu/news/Pages/20854.aspx
Now, if you turn left from the corner of the building, away from the direction of the plaza, you walk right into the Central West End. The restaurants and bars are another wonderful asset within walking distance for care givers, family, and friends. A nurse did say that after work one day she went to meet some friends at a restaurant and low and behold one of the patients from her floor was at the bar - in his gown!
Monday, June 20, 2011
Surprise, surprise!
So! What a surprise that I find myself at Barnes Jewish Community Hospital being treated for AML. I must start this blog by thanking my friend Joe who shared so much through his Blog and inspired much strength and courage in all who read his posts; I can only hope that our postings will be as inspiring.
It is a surreal world in the hospital; as Joe so aptly put it, you are on "hospital time" which is a 24 hour clock that knows not the normal delineations that keep our lives structured and running "like clockwork."
I have rationalized that there are many patients that need help and attention, you may wait a long time until your turn, but when it arrives the caregivers are there for you and you alone 100% - it is worth the wait.
Transport. People come to pick you up and bring you to places where procedures take place. They drop you off and then when you are done they pick you up and return you to your room. My first transport person walked so fast I could enjoy the recycled hospital air blowing through my hair, not quite as fast as when riding a bike but exciting all the same. I mentioned to him that I felt like Danica Patrick in her "Go Daddy" race car and that we might be able to get local car companies to sponsor the wheelchairs so we could all enjoy races in the hallways.
It is a surreal world in the hospital; as Joe so aptly put it, you are on "hospital time" which is a 24 hour clock that knows not the normal delineations that keep our lives structured and running "like clockwork."
I have rationalized that there are many patients that need help and attention, you may wait a long time until your turn, but when it arrives the caregivers are there for you and you alone 100% - it is worth the wait.
Transport. People come to pick you up and bring you to places where procedures take place. They drop you off and then when you are done they pick you up and return you to your room. My first transport person walked so fast I could enjoy the recycled hospital air blowing through my hair, not quite as fast as when riding a bike but exciting all the same. I mentioned to him that I felt like Danica Patrick in her "Go Daddy" race car and that we might be able to get local car companies to sponsor the wheelchairs so we could all enjoy races in the hallways.
Sunday, June 19, 2011
Father's Day
Today is Father's Day! Alana, Daniel, Saul, Stephen, and Grandma Nancy have joined mum at the hospital to celebrate. We enjoyed a walk around the hospital grounds and ate a delicious bagel lunch. Mum is doing wonderfully well and we're enoying a game of sporcle in the hospital room! -Alana
Saturday, June 18, 2011
One Day at a Time...
On Wednesday June 15, Deborah was diagnosed with acute myeloid leukemia. This diagnosis was completely unexpected and only resulted from an abnormal blood count at a general physical. A bone marrow biopsy confirmed this diagnosis. On Thursday, Deborah and Stephen traveled to St. Louis where Deborah was admitted to Barnes Jewish Hospital. Deborah begins chemotherapy sometime next week.
This blog will be written by Deborah and her family. We will try to post updates regularly.
For our dear family and friends who would like to contact Deborah directly, please use the following:
<Full Patient Name and Room Number>
4921 Parkview Place, Shoenberg Pavillion
St. Louis, MO 63110
To call Deborah at the hospital, dial 314-362-5460 and provide name and room number. Otherwise, please call Stephen on his cell or, for the time being, Deborah is also accessible via her cell.
Needless to say, we are in shock. We haven't yet determined how we will deal with this situation; the best we can do is deal with it one day at a time.
This blog will be written by Deborah and her family. We will try to post updates regularly.
For our dear family and friends who would like to contact Deborah directly, please use the following:
<Full Patient Name and Room Number>
4921 Parkview Place, Shoenberg Pavillion
St. Louis, MO 63110
To call Deborah at the hospital, dial 314-362-5460 and provide name and room number. Otherwise, please call Stephen on his cell or, for the time being, Deborah is also accessible via her cell.
Needless to say, we are in shock. We haven't yet determined how we will deal with this situation; the best we can do is deal with it one day at a time.
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