While traveling south along 57 and 70 between Urbana and St Louis, I have always enjoyed the ever changing landscape of corn and soybeans to the gently undulating treed topography, and catching a glimpse of Cahokia Mound. This week I had the opportunity to make two trips to St Louis where I am writing to you from now. On Tuesday I found out that because I still do not have a stem-cell donor, I need to have yet another chemo to hopefully keep my leukemia at bay. So here I am on a sunny and mild Friday looking north from my window at Barnes while getting my first chemo infusion.
Although I was home for only ten days between these rounds of chemo I enjoyed every moment. Ten days sounds like such a short time but being at home was such a pleasure, I savored every moment and each surely felt like an eternity.
I came prepared. I expect to stay six days for treatment but pack for thirty, in case I get a fever and need to stay until my counts recover as I did last month. I brought a small electric kettle and some instant soups (cous cous minestrone, pasta and tomatoes, etc.) to spice up my days. During my last stay, with the help of the nutritionist on the floor, I was successful in getting protein packed Greek Yogurt onto the menu. At the suggestion of my friend Mary, I also lobbied for, and was successful at getting frozen green peas onto the menu. It amazed me how fresh a frozen green pea can taste once cooked. I had peas twice a day mixed in with pasta and marinara sauce, and Fettuccine Alfredo! During my current stay, inspired by the success of my friend Joe with his experience at University of Chicago hospital, I am going to lobby for several menu items such as hummus, whole wheat pancakes, black bean tortillas, etc.
Please know that while here I miss you all and thank you once again for all the help and strength you have provided our family!
Deborah
Deborah's Daily
Saturday, October 22, 2011
Monday, October 10, 2011
Coming home again today!
Funny how things happen all of a sudden; my neutrophils (those germ fighting cells) decided to rock n' roll three days ago and my platelets are now up as well, so I will be returning to Urbana today - yippie!
Again, I want to thank everyone who has supported our family, your help is truly inspiring and so greatly appreciated!
Stephen mentioned that many people have inquired about how one finds a stem cell donor or if they can become a donor themselves so I thought I would post a bit on what we know about the process and provide some resources.
What makes a match?
The first step is to determine the HLA Type of the patient. HLA, Human Lymphocyte Antigen, refers to a group of proteins found on the surface of white blood cells and other cells involved in the body's immune response to foreign substances. These antigens vary from person to person, so once HLA typing is done for the patient, a search for a donor with matching HLA sites can begin.
How do you find a donor that is a match?
When someone like myself with AML needs to have a stem cell transplant there are two options regarding donors: a sibling, who has a 25% chance of being a match, or an unrelated donor. To find an unrelated donor, as in my case, the donor coordinator at the hospital works with The National Marrow Donor Program (NMDP), a registry that includes domestic and international registrants: http://www.marrow.org
When a donor registers with the NMDP, a cotton swab is rubbed along the inside of their cheek. The HLA typing is done directly from this sample and entered into the NMDP registry. The donor coordinator contacts the NMDP to find a match; the donor and the patient remain anonymous. Once a match is found, the NMDP contacts the donor who then decides whether or not to donate. If they do decide to donate, they undergo an information session, a physical, and blood work to make sure they are still the best match for the patient.
How do you register to be a donor with the NMDP?
To be a donor you need to be between the ages of 18 and 60. In East Central Illinois, the Community Blood Services of Illinois on University Avenue is an NMDP donation and recruitment center:
http://www.bloodservices.org
You can donate during office hours, make an evening appointment to register, or attend a donor drive. Sinai Temple and Community Blood Services of Illinois will be hosting a donor drive on Sunday October 30th from 10:30AM - 12:45PM at Sinai Temple, 3104 W. Windsor Rd, Champaign: This link has an announcement from Sinai Temple about the donor drive:
Sinai Temple Announcements (scroll down)
Another donor drive will be held at the University of Illinois on November 9th, in the Illini Union, 1401 W Green St, in room 211 from 10:00AM- 2:00 PM
This link has the announcement information:
http://marrow.org/Pages/DonorDriveSearch.aspx?key=105-4-00193
As an AML patient I am ever so grateful for those who are registered in the NMDP and may be a potential life saving match for me. If you feel you can become a donor, know that you may "Be the Match" for someone and save their life.
Cheers everyone!
Deborah
Again, I want to thank everyone who has supported our family, your help is truly inspiring and so greatly appreciated!
Stephen mentioned that many people have inquired about how one finds a stem cell donor or if they can become a donor themselves so I thought I would post a bit on what we know about the process and provide some resources.
What makes a match?
The first step is to determine the HLA Type of the patient. HLA, Human Lymphocyte Antigen, refers to a group of proteins found on the surface of white blood cells and other cells involved in the body's immune response to foreign substances. These antigens vary from person to person, so once HLA typing is done for the patient, a search for a donor with matching HLA sites can begin.
How do you find a donor that is a match?
When someone like myself with AML needs to have a stem cell transplant there are two options regarding donors: a sibling, who has a 25% chance of being a match, or an unrelated donor. To find an unrelated donor, as in my case, the donor coordinator at the hospital works with The National Marrow Donor Program (NMDP), a registry that includes domestic and international registrants: http://www.marrow.org
When a donor registers with the NMDP, a cotton swab is rubbed along the inside of their cheek. The HLA typing is done directly from this sample and entered into the NMDP registry. The donor coordinator contacts the NMDP to find a match; the donor and the patient remain anonymous. Once a match is found, the NMDP contacts the donor who then decides whether or not to donate. If they do decide to donate, they undergo an information session, a physical, and blood work to make sure they are still the best match for the patient.
How do you register to be a donor with the NMDP?
To be a donor you need to be between the ages of 18 and 60. In East Central Illinois, the Community Blood Services of Illinois on University Avenue is an NMDP donation and recruitment center:
http://www.bloodservices.org
You can donate during office hours, make an evening appointment to register, or attend a donor drive. Sinai Temple and Community Blood Services of Illinois will be hosting a donor drive on Sunday October 30th from 10:30AM - 12:45PM at Sinai Temple, 3104 W. Windsor Rd, Champaign: This link has an announcement from Sinai Temple about the donor drive:
Sinai Temple Announcements (scroll down)
Another donor drive will be held at the University of Illinois on November 9th, in the Illini Union, 1401 W Green St, in room 211 from 10:00AM- 2:00 PM
This link has the announcement information:
http://marrow.org/Pages/DonorDriveSearch.aspx?key=105-4-00193
As an AML patient I am ever so grateful for those who are registered in the NMDP and may be a potential life saving match for me. If you feel you can become a donor, know that you may "Be the Match" for someone and save their life.
Cheers everyone!
Deborah
Monday, October 3, 2011
My "chemo nose" knows???
When I arrived at Barnes in June I tried ever so hard to "walk the hall" each day in order to exercise. All the way around the floor is 500 ft, so 10.56 or 11 times around is a mile; I never could quite make that mile in one day this past summer.
One of the great benefits of my brief reprieve in Urbana was that despite a great loss in large muscle strength due to my extended stay at Barnes this summer, I worked up to being able to walk one mile, slowly of course; amazing what walking up and down one's slightly inclined driveway can do! So, when I returned to Barnes a few weeks ago, I was determined to try and keep up my walking so as not to lose the muscle strength I had just worked so hard to gain back.
This past week I was taking my morning walk in the hall and each time I passed the Family Lounge I smelled something akin to moist earth. I was a bit concerned because I thought live plants were not allowed on the floor and so I peeked into the Family Lounge where I spotted two huge potted plants, one white and one red mum. I voiced my concern to the Charge Nurse on the floor and mentioned that my "Chemo Nose" (highly sensitive to smells since chemo) had detected live plants in the Family Lounge and that I could smell the wet earth in the hall. He said he would check it out and get back to me. Well, the next morning Stephen was here with me and of course I related the story to him as we walked around the floor pointing out the exact location I had smelled the wet earth the day before. He went into the family room, came out and said: "Oh yes, your "Chemo Nose" detected two plastic plants!" We broke up laughing; a plant biologist's fantasy perhaps?
One of the great benefits of my brief reprieve in Urbana was that despite a great loss in large muscle strength due to my extended stay at Barnes this summer, I worked up to being able to walk one mile, slowly of course; amazing what walking up and down one's slightly inclined driveway can do! So, when I returned to Barnes a few weeks ago, I was determined to try and keep up my walking so as not to lose the muscle strength I had just worked so hard to gain back.
This past week I was taking my morning walk in the hall and each time I passed the Family Lounge I smelled something akin to moist earth. I was a bit concerned because I thought live plants were not allowed on the floor and so I peeked into the Family Lounge where I spotted two huge potted plants, one white and one red mum. I voiced my concern to the Charge Nurse on the floor and mentioned that my "Chemo Nose" (highly sensitive to smells since chemo) had detected live plants in the Family Lounge and that I could smell the wet earth in the hall. He said he would check it out and get back to me. Well, the next morning Stephen was here with me and of course I related the story to him as we walked around the floor pointing out the exact location I had smelled the wet earth the day before. He went into the family room, came out and said: "Oh yes, your "Chemo Nose" detected two plastic plants!" We broke up laughing; a plant biologist's fantasy perhaps?
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