Well, just a quick update to let everyone know I am still at Barnes, fevers complicated my discharge so not quite sure when I will be returning to Urbana. Also, I found out last week that the donor I had lined up can not donate for some reason so I am back at square one looking for a donor.
Funny that as soon as I arrived on the floor the nurses and the techs were so happy to see me. Of course I was happy to see them too, they are fabulous caregivers but I would have preferred that our paths would have crossed outside of the hospital instead!
I was pleased to find out that food service will be providing apples and honey in all the cafeterias for Rosh Hashanah, and that inpatients can dial in and listen to the reform services at Shaare Emmeth synagogue.
Thanks again to all for helping our family! A happy and healthy Rosh Hashanah to all.
Deborah's Daily
Monday, September 26, 2011
Monday, September 19, 2011
Every day is a new day!
This afternoon I received a call from my physician. He explained that because the donor currently being "worked up" (that is, undergoing a physical and blood tests) will not be able to donate their stem cells until mid-October, that I will need to undergo a Consolidation Chemotherapy starting tomorrow at Barnes. The idea behind this chemotherapy is to keep the leukemia at bay prior to the transplant (kind of like a "bridge loan") which, if all goes well, would start at the end of October.
So, off to Barnes in the morning and if all goes well, I could be back in Urbana in about 10 days. I can visualize my meals at Barnes already, two beautiful bowls of oatmeal....
So, off to Barnes in the morning and if all goes well, I could be back in Urbana in about 10 days. I can visualize my meals at Barnes already, two beautiful bowls of oatmeal....
Thursday, September 15, 2011
Food glorious food!
It has been almost three weeks that I have had the great pleasure to be at home in Urbana. It may sound strange but while in the hospital I
basically ate the same food each day for many weeks at a time. The protocol in the hospital is that you phone in your food order anytime between 6AM and 8PM and whatever you wish to eat from the menu will be delivered to your room by an energetic and smiling server within 45 minutes.
Once I figured out what foods would agree with my digestive system after my first chemo, my food choices rarely deviated. The people who answer the phone and take your food order could predict with great accuracy what I would be ordering for each meal and would sometimes remind me of an item I overlooked. For example, breakfast was always two beautiful bowls of oatmeal, one bowl of Cream of Wheat, a banana and a carton of skim milk. You are probably wondering how I could possibly eat three bowls of cereal in one sitting, however, this strategy of ordering multiple bowls ensures that almost half of each bowl will be hot upon arrival.
As predictable as my ordering would be, each meal was unique. It is truly dependent upon the cook how the food you order, albeit the same each day, turns out. I will report that I only encountered burnt oatmeal once in 69 days, and that when a meal was nicely done, I phoned to compliment the cook of the day.
Jello. A few weeks after my first chemo I had an epiphany that people in my situation with sensitive digestion would probably do well with a little jello. At first I enjoyed the red jello, then my taste buds changed - dictated by the chemo of course and I was onto green jello; tastes changed yet again and I became firmly attached to the orange jello. For several weeks I ordered orange jello with every meal; I did not have much of an appetite so a bite of jello here and there got me through the "pushing" of food at each meal to maintain my health.
You may be perplexed as to why the title of this post is "Food glorious food" and I am reminiscing about hospital food. Well, it is the knowledge that with my upcoming stem cell transplant (date yet to be confirmed) that I have been revisiting all of this in light of the absolutely delicious meals I have enjoyed since being home. Which brings me to the wonderful discussion of the diversity of fabulous cooks in our C-U community!
While in hospital I heard rave reviews from each of our two teenage boys (each possessing discerning, discriminating palettes) of meals delivered to our family. From "The Barefoot Contessa" chicken, corned beef
sandwiches, to macaroni and cheese, homemade bread and goat milk gelato, and everything in-between, I can say with certainty that that the boys understated how delicious each meal has been.
Meals provide the opportunity to socialize, share events of the day, and reconnect. Since being home I have truly enjoyed visiting with everyone who has come to our house. I want to thank you all yet again for bringing over a meal, bagels, or groceries but most important, for your generosity and friendship.
basically ate the same food each day for many weeks at a time. The protocol in the hospital is that you phone in your food order anytime between 6AM and 8PM and whatever you wish to eat from the menu will be delivered to your room by an energetic and smiling server within 45 minutes.
Once I figured out what foods would agree with my digestive system after my first chemo, my food choices rarely deviated. The people who answer the phone and take your food order could predict with great accuracy what I would be ordering for each meal and would sometimes remind me of an item I overlooked. For example, breakfast was always two beautiful bowls of oatmeal, one bowl of Cream of Wheat, a banana and a carton of skim milk. You are probably wondering how I could possibly eat three bowls of cereal in one sitting, however, this strategy of ordering multiple bowls ensures that almost half of each bowl will be hot upon arrival.
As predictable as my ordering would be, each meal was unique. It is truly dependent upon the cook how the food you order, albeit the same each day, turns out. I will report that I only encountered burnt oatmeal once in 69 days, and that when a meal was nicely done, I phoned to compliment the cook of the day.
Jello. A few weeks after my first chemo I had an epiphany that people in my situation with sensitive digestion would probably do well with a little jello. At first I enjoyed the red jello, then my taste buds changed - dictated by the chemo of course and I was onto green jello; tastes changed yet again and I became firmly attached to the orange jello. For several weeks I ordered orange jello with every meal; I did not have much of an appetite so a bite of jello here and there got me through the "pushing" of food at each meal to maintain my health.
You may be perplexed as to why the title of this post is "Food glorious food" and I am reminiscing about hospital food. Well, it is the knowledge that with my upcoming stem cell transplant (date yet to be confirmed) that I have been revisiting all of this in light of the absolutely delicious meals I have enjoyed since being home. Which brings me to the wonderful discussion of the diversity of fabulous cooks in our C-U community!
While in hospital I heard rave reviews from each of our two teenage boys (each possessing discerning, discriminating palettes) of meals delivered to our family. From "The Barefoot Contessa" chicken, corned beef
sandwiches, to macaroni and cheese, homemade bread and goat milk gelato, and everything in-between, I can say with certainty that that the boys understated how delicious each meal has been.
Meals provide the opportunity to socialize, share events of the day, and reconnect. Since being home I have truly enjoyed visiting with everyone who has come to our house. I want to thank you all yet again for bringing over a meal, bagels, or groceries but most important, for your generosity and friendship.
Saturday, September 3, 2011
Home
My last post mentioned that I would not be sure of whether I would be strong enough to leave St Louis initially or not. After one extra night I was quite ready to make the journey home. When I count back to June 17 and realize I was in the hospital for 69 days, it genuinely feels like an eternity has passed and that the entire experience was just a bit of a bad dream; or to paraphrase the Monty Python scene where King Arthur fights the Black Knight who is being hacked to bits: "It is only a flesh wound."
http://www.youtube.com/watch?v=2eMkth8FWno
Since my return home I have become a bit stronger each day and my appetite has started to come back. I am also walking outside. Initially, I was only able to walk in circles around our backyard, which is quite small. My mum laughed at the scene and said that it reminded her of the characters walking in the yard on the TV show Hogan's Heroes! I have now graduated to "hill training" in the front of our house where I "hike" up and down our walk to the sidewalk because it is on an incline. I did feel a bit wild and crazy yesterday and taking my life into my hands, walked on the very uneven sidewalk in front of our house down two houses and back without falling!
This past Monday Stephen and I returned to St Louis, slept over and spent all of Tuesday at Barnes. I had labs, a bone marrow aspiration, a dermatology apt (for a rash that started in hospital just a few days before I left), and an apt with my oncologist. I should also mention that over the lunch hour we visited the "makeover" room at Barnes where I discovered an upside of losing my hair is that I can now sport scarves and turbans of various colors and shapes each day.
The results from my blood work showed no change from the week prior. I was disappointed as I was hoping not only for higher blood counts (which would give me more energy) but especially higher white blood cells and neutrophils - those fabulous infection fighting cells, however, I seem to have enough of everything at the moment to keep me out of hospital. The rash was confirmed to be a result of all the drugs I had been on in hospital and as of today has started to resolve.
My oncologist revealed the next step in my treatment - a stem cell transplant. Although the bone marrow aspiration results remain pending, the fact that my leukemia was unresponsive to the first course of chemotherapy necessitates having a transplant as soon as possible to obtain the best possible outcome. My team has identified a stem-cell donor that is a perfect match for me from the National Marrow Donor Program and will submit an application to begin the process as soon as possible so I can hopefully avoid an interim chemotherapy to keep the leukemia at bay.
From what I understand at the moment, the transplant starts off with a very strong chemo to ablate my marrow cells so that the donor cells can take over. This process should take about one month in hospital at Barnes. Following the transplant, I will need to stay in St Louis close to the hospital for an undetermined length of time - perhaps 1-3 months depending on my recovery; so I will need to find a short term rental close to Barnes.
I weathered two chemos over a 69 day stay in the hospital, and these last few days here in Urbana have felt like a pleasant eternity. The thought of returning for a potentially even longer stay in St Louis seems daunting at first, however, it is my best shot at achieving a remission.
Many, many thanks to all of you who have supported me and our family through these last several months. Make no mistake, your love and support have made a tremendous difference to all of us, each and every day. Your continued support will surely make a difference in our lives during this next step of my treatment.
If you are new to this Blog, you can also check out our "Lotsa Helping Hands" site where you can sign up electronically to help our family.
https://lls.lotsahelpinghands.com/c/643312/login/?logout&language=en
Enjoy every moment,
Deborah
http://www.youtube.com/watch?v=2eMkth8FWno
Since my return home I have become a bit stronger each day and my appetite has started to come back. I am also walking outside. Initially, I was only able to walk in circles around our backyard, which is quite small. My mum laughed at the scene and said that it reminded her of the characters walking in the yard on the TV show Hogan's Heroes! I have now graduated to "hill training" in the front of our house where I "hike" up and down our walk to the sidewalk because it is on an incline. I did feel a bit wild and crazy yesterday and taking my life into my hands, walked on the very uneven sidewalk in front of our house down two houses and back without falling!
This past Monday Stephen and I returned to St Louis, slept over and spent all of Tuesday at Barnes. I had labs, a bone marrow aspiration, a dermatology apt (for a rash that started in hospital just a few days before I left), and an apt with my oncologist. I should also mention that over the lunch hour we visited the "makeover" room at Barnes where I discovered an upside of losing my hair is that I can now sport scarves and turbans of various colors and shapes each day.
The results from my blood work showed no change from the week prior. I was disappointed as I was hoping not only for higher blood counts (which would give me more energy) but especially higher white blood cells and neutrophils - those fabulous infection fighting cells, however, I seem to have enough of everything at the moment to keep me out of hospital. The rash was confirmed to be a result of all the drugs I had been on in hospital and as of today has started to resolve.
My oncologist revealed the next step in my treatment - a stem cell transplant. Although the bone marrow aspiration results remain pending, the fact that my leukemia was unresponsive to the first course of chemotherapy necessitates having a transplant as soon as possible to obtain the best possible outcome. My team has identified a stem-cell donor that is a perfect match for me from the National Marrow Donor Program and will submit an application to begin the process as soon as possible so I can hopefully avoid an interim chemotherapy to keep the leukemia at bay.
From what I understand at the moment, the transplant starts off with a very strong chemo to ablate my marrow cells so that the donor cells can take over. This process should take about one month in hospital at Barnes. Following the transplant, I will need to stay in St Louis close to the hospital for an undetermined length of time - perhaps 1-3 months depending on my recovery; so I will need to find a short term rental close to Barnes.
I weathered two chemos over a 69 day stay in the hospital, and these last few days here in Urbana have felt like a pleasant eternity. The thought of returning for a potentially even longer stay in St Louis seems daunting at first, however, it is my best shot at achieving a remission.
Many, many thanks to all of you who have supported me and our family through these last several months. Make no mistake, your love and support have made a tremendous difference to all of us, each and every day. Your continued support will surely make a difference in our lives during this next step of my treatment.
If you are new to this Blog, you can also check out our "Lotsa Helping Hands" site where you can sign up electronically to help our family.
https://lls.lotsahelpinghands.com/c/643312/login/?logout&language=en
Enjoy every moment,
Deborah
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