In our family, time together always includes long, lingering dinners centered on the foods we all enjoy to bring out the best in our
conversation. With our family being together out of a hospital setting for the first time this past week, I was looking forward to enjoying some of our favorite meals together, however, my intermittent nausea and lack of taste became frustrating.
Not all of my taste buds have come back yet; I can taste salty and sweet but not a lot in between. For example, for breakfast I have oatmeal with maple syrup as a sweetener or toast with butter and jam, and for lunch a bagel with lox spread or a latke from the deli around the corner.
The first week here I made marinara with tinned tomatoes from the local grocery store. The result tasted acidic and flavorless. I also found that I have an aversion to Parmesan cheese - imagine! I convinced myself that the marinara did not taste good because I did not use my preferred brand of Cento tomatoes or fresh Parmesan. So when Stephen and the kids arrived last week, I sent them to Viviano's Grocery on The Hill to purchase Cento tomatoes, fresh pasta, olives, and Parmesan, and made sure they did not forget a box of Torrone (nougat candy).
So, I attempted to make marinara again with the Cento tomatoes and paste, and the fresh Parmesan. Unfortunately for me there was no
improvement in taste but the family assured me it tasted exactly how I have always made it and was delicious. What I have found delicious, thanks to Alana, is Tortellini with Balsamic vinegar, and thanks to Daniel, small pasta shells tossed with a fresh Roma tomato sauce, chopped fresh basil and fresh mozzarella.
On Saturday, the 5th night of Hanukkah, I had a craving for, and enough energy to attempt an apple pie. Having just the bare basics here in the kitchen in St. Louis was not a deterrent and actually provided a chance for the kids to see how one can improvise and cook without all the equipment most of us have at home these days. We cut the butter into the flour with two knives, used a wine bottle as a rolling pin, and a square glass Corning ware as the pie plate. Granny Smith and Gala apples were a perfect combination, and Stephen and Saul surprised us with vanilla ice cream to top off the pie; deemed a definite success by all including me!
Late last Friday I received the preliminary results from my 30 day post transplant bone marrow aspiration. So far there is no sign of any leukemia cells (Yippie), this week we will have the full report.
Happy holidays to everyone. Enjoy every moment and time together with family and friends!
Deborah
Deborah's Daily
Monday, December 26, 2011
Saturday, December 17, 2011
On the other side of the street
I found out yesterday at one of my appointments that I almost broke the record for fastest stem-cell transplant discharge on day +14. After being discharged I spent 4 days at the hotel connected to the hospital. My cousin Gary and his wife Diane came for two days and they were fabulous company. Of course Stephen traveled back and forth as much as he could and Alana came too. I had a mini-fridge and microwave so breakfast and lunch were covered: instant oatmeal and bagels with lox spread. Even though we were minutes from a multitude of restaurants, I was too weak to walk that far and so took advantage of the courtesy mini-van which will take you anywhere you would like to go. I have always enjoyed Udon noodle soup and we found a Japanese restaurant close by and it surely hit the spot!
On Friday Stephen and I moved into the apartment across the street - and I must say it is great looking back at the hospital! Stephen spent the weekend procuring and preparing a wide variety of foods to have at hand for several days which has been a great help. He also managed to get me outside so I could start to discover a few blocks around the apartment. My weekend goal was to be able to cross Forest Park Ave in the 30 seconds provided by the crosswalk - goal achieved on Monday morning on my way to an appointment!
My mom arrived Wednesday and Thursday I was able to walk from the apartment, albeit quite slowly, north on Euclid as far as the Chase Park Plaza Hotel on Maryland Avenue. This was great because I so enjoyed looking at the hotel illuminated each night from the hospital and now I can walk to it. Speaking of walking slowly; Stephen was a bit concerned that I would surely be a potential target for purse snatchers in the Central West End but I assured him that with my aqua mask and head wrapped in a colorful scarf I will probably scare off any potential offender.
The apartment is comfortable and although the traffic is audible from Forest Park Ave it quiets down at night and I would say sure beats listening to the click and hum of the IV pump all night. The great thing is that I can still hear the helicopters coming in to land at the hospital. I always smile and think perhaps they are delivering somebody's stem cell donation.
So, at this time my counts are starting to go down, entering a "valley" as they said. There will be an eventual leveling off but it will take a bit of time. Next week on day 30 I will have a bone marrow aspiration (I think it will be my eighth since June, but who's counting?) and the expected results should be that all the cells are the donor cells, which would mean they have engrafted successfully. I will cross my fingers and toes! Speaking of bone marrow aspirations, my last one, just prior to my conditioning chemo for the stem cell transplant was performed by a first year Fellow who mentioned that of the dozen or so that he had done, I was the fourth patient who only used a local anesthetic, the other three were Marines at the VA - I guess I am part of an elite corps!
Thank you to everyone for great Blog posts, phone calls, emails, running errands, bringing over beautiful meals, etc. Your friendship and support continues to enrich our lives and brighten each day.
We wish everyone a wonderful holiday break filled with family, fun and beautiful candlelight. Speaking of candle and "match", I just watched the Maccabeats New Chanukkah video and was pleasantly surprised to see that they have teamed up with The Gift of Life Donor Program (although a separate organization, works with The National Marrow Donor Program) to raise money to process cheek swabs to help find a "match" for patients in need. Here is the link, check it out and enjoy the music too!
http://www.youtube.com/user/MaccabeatsChannel
On Friday Stephen and I moved into the apartment across the street - and I must say it is great looking back at the hospital! Stephen spent the weekend procuring and preparing a wide variety of foods to have at hand for several days which has been a great help. He also managed to get me outside so I could start to discover a few blocks around the apartment. My weekend goal was to be able to cross Forest Park Ave in the 30 seconds provided by the crosswalk - goal achieved on Monday morning on my way to an appointment!
My mom arrived Wednesday and Thursday I was able to walk from the apartment, albeit quite slowly, north on Euclid as far as the Chase Park Plaza Hotel on Maryland Avenue. This was great because I so enjoyed looking at the hotel illuminated each night from the hospital and now I can walk to it. Speaking of walking slowly; Stephen was a bit concerned that I would surely be a potential target for purse snatchers in the Central West End but I assured him that with my aqua mask and head wrapped in a colorful scarf I will probably scare off any potential offender.
The apartment is comfortable and although the traffic is audible from Forest Park Ave it quiets down at night and I would say sure beats listening to the click and hum of the IV pump all night. The great thing is that I can still hear the helicopters coming in to land at the hospital. I always smile and think perhaps they are delivering somebody's stem cell donation.
So, at this time my counts are starting to go down, entering a "valley" as they said. There will be an eventual leveling off but it will take a bit of time. Next week on day 30 I will have a bone marrow aspiration (I think it will be my eighth since June, but who's counting?) and the expected results should be that all the cells are the donor cells, which would mean they have engrafted successfully. I will cross my fingers and toes! Speaking of bone marrow aspirations, my last one, just prior to my conditioning chemo for the stem cell transplant was performed by a first year Fellow who mentioned that of the dozen or so that he had done, I was the fourth patient who only used a local anesthetic, the other three were Marines at the VA - I guess I am part of an elite corps!
Thank you to everyone for great Blog posts, phone calls, emails, running errands, bringing over beautiful meals, etc. Your friendship and support continues to enrich our lives and brighten each day.
We wish everyone a wonderful holiday break filled with family, fun and beautiful candlelight. Speaking of candle and "match", I just watched the Maccabeats New Chanukkah video and was pleasantly surprised to see that they have teamed up with The Gift of Life Donor Program (although a separate organization, works with The National Marrow Donor Program) to raise money to process cheek swabs to help find a "match" for patients in need. Here is the link, check it out and enjoy the music too!
http://www.youtube.com/user/MaccabeatsChannel
Monday, December 5, 2011
Discharged!
Well, as "usual" so to speak, I am always surprised when the doctors say that I will be discharged in two days. I can never believe it but it always comes to pass. So, I will be discharged today, Monday December 5th which is day +14 from the stem cell transplant. I will be staying in St Louis for a while in an apartment across the street from the hospital so that will be a new experience as well.
I must say that I was remiss in blogging the last two weeks, but today is the first day I have any energy (the doctors truly know when you are ready to leave). I enjoyed having Thanksgiving with Stephen, my mom and the kids. A friend quipped that at least they could have made my porridge into a turkey shape that day, as that was about all I was consuming at the time.
Of course this Thanksgiving was especially meaningful, to have a donor donate stem-cells was something to really be thankful for. Also, I am ever so thankful to everyone for all of your continued love and support through this incredible journey, it has definitely made such a huge difference for all of our family members - thank you!
I must say that I was remiss in blogging the last two weeks, but today is the first day I have any energy (the doctors truly know when you are ready to leave). I enjoyed having Thanksgiving with Stephen, my mom and the kids. A friend quipped that at least they could have made my porridge into a turkey shape that day, as that was about all I was consuming at the time.
Of course this Thanksgiving was especially meaningful, to have a donor donate stem-cells was something to really be thankful for. Also, I am ever so thankful to everyone for all of your continued love and support through this incredible journey, it has definitely made such a huge difference for all of our family members - thank you!
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