Deborah's Daily
Thursday, November 29, 2012
Happy Thanksgiving to everyone!
Thanksgiving, a wonderful holiday for all families and friends to enjoy time together, and always special in our family, has become even more of a Thankful day because I received my stem-cell transplant from an unrelated donor two days before Thanksgiving 2011. Now celebrating my one year anniversary I am ever so thankful to my donor, it has been a FABULOUS year - I am here! I also just received news that my one year bone marrow results are 100% donor cells, no cancer cells; thank you again my unrelated donor for this tremendous gift!
Thank YOU ALL for your continued love and support, together with my unrelated donor you have brought me to this joyous point on this journey of life.
Deborah
Tuesday, October 16, 2012
Community & Me
Community.
There to nurture you, there to cheer you, to inspire you. We are so blessed to be part of such a warm wonderful community.
My friend has passed away and he has been a huge part of this community for me in my journey. Community, there to mourn and grieve with. We are there for my friend and his family. Community there to give back to. Everyday I honor my friend's memory.
Me.
A long overdue post. I am well, moving along toward my one year bone marrow transplant anniversary in November. Still low immunity, so careful about interactions, still walking everyday.
Enjoy every moment,
Deborah
There to nurture you, there to cheer you, to inspire you. We are so blessed to be part of such a warm wonderful community.
My friend has passed away and he has been a huge part of this community for me in my journey. Community, there to mourn and grieve with. We are there for my friend and his family. Community there to give back to. Everyday I honor my friend's memory.
Me.
A long overdue post. I am well, moving along toward my one year bone marrow transplant anniversary in November. Still low immunity, so careful about interactions, still walking everyday.
Enjoy every moment,
Deborah
Saturday, March 31, 2012
Allo, Allo!
It has been a long time since I have put fingers to the keys but felt tonight energy to give a little update. Time is moving along and I have been home in Urbana now for almost 2 months. My 100 day bone marrow showed no leukemic cells and 100% donor cells so that is great news. I am still wearing my blue mask when I am in a store and I have had the wonderful opportunity to meet friends doing so. The funny thing is, I know who you are, but nobody can really tell it is me unless I say something. This has led to a few awkward occasions that were resolved by phone calls after the fact explaining that it was me yelling and waving and so excited to see someone I knew, quite hilarious really when you think about it. Also, since I frequent very few shops, the checkers and managers have come to know me so it is much more comfortable than it was initially.
The record breaking warm weather in March necessitated purchasing all sorts of SPF protective clothing and hats. Dan and Shira from Champaign Surplus were so gracious to act as my personal shoppers so I did not have to try clothes on with my mask in the store.
The last few days I have 'something' keeping me very quiet and indoors with a mild elevation in temperature, but have started an antibiotic today so I am hoping it will resolve quickly. My lack of energy these last few days of course felt like quite a dent in my Passover preparations. However, during the first month I was home I cleaned every cupboard and drawer in the house with the thought of, why wait until after Purim to get started? This has really helped and we should be ready for Passover just in time.
I have enjoyed walking with friends in my neighborhood almost every day since I have been home and this is really the best way for me to visit with people at this time. Just give me a call or email to take a walk.
So happy to be able to wish everyone a happy Passover, a happy Easter and happy spring!!!
The record breaking warm weather in March necessitated purchasing all sorts of SPF protective clothing and hats. Dan and Shira from Champaign Surplus were so gracious to act as my personal shoppers so I did not have to try clothes on with my mask in the store.
The last few days I have 'something' keeping me very quiet and indoors with a mild elevation in temperature, but have started an antibiotic today so I am hoping it will resolve quickly. My lack of energy these last few days of course felt like quite a dent in my Passover preparations. However, during the first month I was home I cleaned every cupboard and drawer in the house with the thought of, why wait until after Purim to get started? This has really helped and we should be ready for Passover just in time.
I have enjoyed walking with friends in my neighborhood almost every day since I have been home and this is really the best way for me to visit with people at this time. Just give me a call or email to take a walk.
So happy to be able to wish everyone a happy Passover, a happy Easter and happy spring!!!
Thursday, February 2, 2012
Two posts: Groundhog Day and The Blue Mask
1. Groundhog Day!!
Punxsutawney Phil, the Pennsylvania groundhog, saw his shadow and returned to his underground den, predicting more winter weather ahead.
On Tuesday, I received the okay from my doctor to return to Urbana to continue my recovery. Yippee! So today, Groundhog Day, I will be
returning to Urbana! I am so excited I had to lie down and have a rest, ha, ha!
What does this all mean? Well, I am +74 days from my stem-cell transplant. While although much stronger now and able to drive, I am still extremely vulnerable to infections of all kinds and will be for quite some time. I still need to limit visitors and wear my blue mask when I go into a store, elevator, doctor's office, etc. No cut flowers or plants in the house; so, more roses for everybody else on Valentine's Day!
How does this affect the Lotsa Helping Hands community? We have postponed putting up a calendar for February for a few days until I can come home, get sorted, and figure out more clearly what our family needs are.
I want to thank everyone for all the time, energy, and effort you have made to help our family!
2. The Blue NP150 Mask
Following my four chemotherapy treatments prior to my stem-cell
transplant, my immune system did not have enough neutrophils to fight infection and it took a bit of time to rebuild. During this rebuilding time I was still in the hospital and I would have to wear my blue NP150 mask when I left my room to walk the hall. Now, even though I am
technically not
neutropenic following my stem-cell transplant, I must take
immunosuppressors which make me vulnerable to all sorts of bacteria and viruses. Believe it or not, even though I have a "new" immune system thanks to my wonderful stem-cell donor, I have no immunity to all the childhood diseases that I either once contracted (chicken pox) or had immunizations against (measles). I will get new immunizations at one and two years post transplant. So, when I leave my lovely apartment across the street from the hospital I must wear my blue NP150 mask!
It has been really interesting to see how people react to me and my blue mask. When I am in the elevator people are polite, but they may or may not look at me directly in the eye and may or may not talk to me. Alana assures me that elevator etiquette is always a bit awkward to navigate. This past week, my cousin Jonathan was visiting and we were in the elevator together when a young fellow (I am sure I was old enough to be his mum) sporting a Bradley T-shirt made eye contact and smiled. I asked if he was a student here -- people are usually surprised to hear a voice sounding more like Princess Leia's rather than like Darth Vader's come out from behind the blue mask! -- he said no, he was a local golf-pro and was very chatty making the usually laborious five flights down whiz by. I have since seen him in the elevator this week three times and we continue to chat.
I have been able to drive for a few weeks now and I do go to a grocery store frequently since I can not carry much at any one time. There is a grocery store that I can walk to in the neighborhood and I am there almost everyday because it is on my exercise walking route. They have grown accustomed to me, are always lovely, make eye contact, ask how I am, etc.
I was in a shop on The Hill (the Italian neighborhood) buying some fresh pasta for dinner and a man asked me if the mask was to keep something I had away from him or germs away from me. I thought that was a good question and I assured him it was to keep germs away from me. He thought that was a good idea and wondered why we all don't wear masks, like in Japan.
Now children, who are so incredibly observant and honest, are another story. Depending on the age of the child the reaction varies. Infants and toddlers usually burst into tears and try to wiggle out of the seat in the cart while their caregiver's, who are facing the opposite direction, take several minutes to figure out what is wrong and by that time I have moved from the citrus isle to the apple isle out of range of the child's vision leaving the caregiver perturbed at best.
Children who are older are often just curious. They look at me and ask their caregiver why I have a mask on. The answers range from "She just had an operation", to "She must not feel that well." In these instances we are usually pushing carts in opposite directions and our eyes meet only briefly. One little boy of note was pushing his own mini-cart and his mum and I were leaning over the same bin picking out melons. He asked his mum while looking at me why I have a mask on and because we were both facing him and the same distance from him I began to answer that I just had a stem-cell transplant and that I had to protect myself from germs. The boy declared that he hoped he would never get so sick that he would have to wear a mask. I wholeheartedly agreed, started to tear up (the mask does not cover my eyes of course) and moved on to the tomato bin.
So Urbana-Champaign - the Blue Mask is coming to town!
Punxsutawney Phil, the Pennsylvania groundhog, saw his shadow and returned to his underground den, predicting more winter weather ahead.
On Tuesday, I received the okay from my doctor to return to Urbana to continue my recovery. Yippee! So today, Groundhog Day, I will be
returning to Urbana! I am so excited I had to lie down and have a rest, ha, ha!
What does this all mean? Well, I am +74 days from my stem-cell transplant. While although much stronger now and able to drive, I am still extremely vulnerable to infections of all kinds and will be for quite some time. I still need to limit visitors and wear my blue mask when I go into a store, elevator, doctor's office, etc. No cut flowers or plants in the house; so, more roses for everybody else on Valentine's Day!
How does this affect the Lotsa Helping Hands community? We have postponed putting up a calendar for February for a few days until I can come home, get sorted, and figure out more clearly what our family needs are.
I want to thank everyone for all the time, energy, and effort you have made to help our family!
2. The Blue NP150 Mask
Following my four chemotherapy treatments prior to my stem-cell
transplant, my immune system did not have enough neutrophils to fight infection and it took a bit of time to rebuild. During this rebuilding time I was still in the hospital and I would have to wear my blue NP150 mask when I left my room to walk the hall. Now, even though I am
technically not
neutropenic following my stem-cell transplant, I must take
immunosuppressors which make me vulnerable to all sorts of bacteria and viruses. Believe it or not, even though I have a "new" immune system thanks to my wonderful stem-cell donor, I have no immunity to all the childhood diseases that I either once contracted (chicken pox) or had immunizations against (measles). I will get new immunizations at one and two years post transplant. So, when I leave my lovely apartment across the street from the hospital I must wear my blue NP150 mask!
It has been really interesting to see how people react to me and my blue mask. When I am in the elevator people are polite, but they may or may not look at me directly in the eye and may or may not talk to me. Alana assures me that elevator etiquette is always a bit awkward to navigate. This past week, my cousin Jonathan was visiting and we were in the elevator together when a young fellow (I am sure I was old enough to be his mum) sporting a Bradley T-shirt made eye contact and smiled. I asked if he was a student here -- people are usually surprised to hear a voice sounding more like Princess Leia's rather than like Darth Vader's come out from behind the blue mask! -- he said no, he was a local golf-pro and was very chatty making the usually laborious five flights down whiz by. I have since seen him in the elevator this week three times and we continue to chat.
I have been able to drive for a few weeks now and I do go to a grocery store frequently since I can not carry much at any one time. There is a grocery store that I can walk to in the neighborhood and I am there almost everyday because it is on my exercise walking route. They have grown accustomed to me, are always lovely, make eye contact, ask how I am, etc.
I was in a shop on The Hill (the Italian neighborhood) buying some fresh pasta for dinner and a man asked me if the mask was to keep something I had away from him or germs away from me. I thought that was a good question and I assured him it was to keep germs away from me. He thought that was a good idea and wondered why we all don't wear masks, like in Japan.
Now children, who are so incredibly observant and honest, are another story. Depending on the age of the child the reaction varies. Infants and toddlers usually burst into tears and try to wiggle out of the seat in the cart while their caregiver's, who are facing the opposite direction, take several minutes to figure out what is wrong and by that time I have moved from the citrus isle to the apple isle out of range of the child's vision leaving the caregiver perturbed at best.
Children who are older are often just curious. They look at me and ask their caregiver why I have a mask on. The answers range from "She just had an operation", to "She must not feel that well." In these instances we are usually pushing carts in opposite directions and our eyes meet only briefly. One little boy of note was pushing his own mini-cart and his mum and I were leaning over the same bin picking out melons. He asked his mum while looking at me why I have a mask on and because we were both facing him and the same distance from him I began to answer that I just had a stem-cell transplant and that I had to protect myself from germs. The boy declared that he hoped he would never get so sick that he would have to wear a mask. I wholeheartedly agreed, started to tear up (the mask does not cover my eyes of course) and moved on to the tomato bin.
So Urbana-Champaign - the Blue Mask is coming to town!
Saturday, January 21, 2012
Face-lift!
My eyebrows and lashes are scarce and thin at best and contribute to my overall monochrome facial pallor. Alana explained that with an eyebrow pencil and lipstick I could regain color, depth and dimension!
Now that everyone has returned to their work and school routines and the sales are winding down, the highways and the malls at mid-day are not crowded providing me with a pretty safe, albeit quick, shopping
opportunity. I can not test any make-up in the store and found the gentleman at the counter insightful regarding color choices for the lipstick and the eyebrow pencil. This afternoon Alana came by to do my make-over (Stephen unsuccessfully lobbied for the Jack Nicholson eyebrow look) and the result to my surprise was fabulous!
Alana in action!
Ta-Da!!
Now that everyone has returned to their work and school routines and the sales are winding down, the highways and the malls at mid-day are not crowded providing me with a pretty safe, albeit quick, shopping
opportunity. I can not test any make-up in the store and found the gentleman at the counter insightful regarding color choices for the lipstick and the eyebrow pencil. This afternoon Alana came by to do my make-over (Stephen unsuccessfully lobbied for the Jack Nicholson eyebrow look) and the result to my surprise was fabulous!
Alana in action!
Ta-Da!!
Monday, January 9, 2012
Stepping out
Well, it must be the tea. My friend Carol arrived from Edinburgh on Thursday to spend a week here with me. Carol made me a cup of tea two days ago and I tasted it but I thought it was bitter and could not drink it. She made me a cup yesterday and it tasted a little better and I drank some of it. Today she made me tea again and it tasted very good and I drank all of it! Not sure if it is the effect of having caffeine for the first time since June 15th but yesterday and today I felt great; clear thinking and energetic. So much so that I felt I was ready to try and drive the car to Schnuck's to do a proper grocery run. It was a success. I felt fine driving and I was able to walk around the store for almost an hour before I needed to sit down and put my legs up; thank goodness they have benches by the checkout lanes.
The only unexpected event was getting stuck in the squatting position in front of the open fridge as Carol and I were putting away the washed fruits and vegetables! Good thing she was there to hoist me into the upright position and put me in a chair to let my legs recover. I will have to work on those muscles more.
So tomorrow I am going to forgo the cup of tea to see if I feel the same pep as I did today or if the Yorkshire Gold tea is responsible.
Carol's photo of me in front of the sculpture at the Central Reform Congregation on Kingshighway, St Louis.
Carol and me
The only unexpected event was getting stuck in the squatting position in front of the open fridge as Carol and I were putting away the washed fruits and vegetables! Good thing she was there to hoist me into the upright position and put me in a chair to let my legs recover. I will have to work on those muscles more.
So tomorrow I am going to forgo the cup of tea to see if I feel the same pep as I did today or if the Yorkshire Gold tea is responsible.
Carol's photo of me in front of the sculpture at the Central Reform Congregation on Kingshighway, St Louis.
Carol and me
Thursday, January 5, 2012
Walking
I am feeling better and stronger week by week. I was able to quantify that I am now walking twice as fast by observing that initially in order to safely cross Forest Park I needed the "Walk" signal's full 30 seconds, I can now cross comfortably in 15 seconds!
The only problem with feeling stronger is figuring out if I am overdoing it or not. Last week the weather was gorgeous and I was craving tortellini so Stephen and I went to The Hill. We walked, and kept walking,
discovering shops we had not visited before. One of the gems we found was Mama Toscana's Ravioli. Although famous for their breaded ravioli, we opted for the traditional ravioli. The dough is delicate and the cheese filling delicious. It was so good we decided to return the next day so we could buy more to put in my freezer. We walked and talked and I felt fine. Stephen was surprised how much I had walked during those two days. Well, last Friday it all caught up with me and I am just now recovering my legs.
A healthy and happy 2012 to all!
The only problem with feeling stronger is figuring out if I am overdoing it or not. Last week the weather was gorgeous and I was craving tortellini so Stephen and I went to The Hill. We walked, and kept walking,
discovering shops we had not visited before. One of the gems we found was Mama Toscana's Ravioli. Although famous for their breaded ravioli, we opted for the traditional ravioli. The dough is delicate and the cheese filling delicious. It was so good we decided to return the next day so we could buy more to put in my freezer. We walked and talked and I felt fine. Stephen was surprised how much I had walked during those two days. Well, last Friday it all caught up with me and I am just now recovering my legs.
A healthy and happy 2012 to all!
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