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!
Tuesday, November 22, 2011
Day "0"
My stem cell donor came through and I received the stem cells late last night. Of course, having the active imagination that I do, the day before I came up with a variety of scenarios of how the stem cells coming my way could not have found me - you know, car, plane, or helicopter accidents, planes grounded due to volcanic ash, etc. When I mentioned this to my physician he had a answer for every situation, which was very reassuring.
Yesterday was exciting because they have a board at the nurse's station stating what time each patient's stem cells are meant to arrive. Once the courier and the stem cells arrive at the international airport at Lambert Field they come to Barnes by medical helicopter. They then go to the stem cell lab for processing and counting and then come up to the floor. My stem cells were scheduled to arrive at 10 PM and then late in the afternoon my nurse informed me that they were able to catch an earlier flight and were meant to arrive at 8:30 PM! They were processed straight away and they were done running in to me by 10 PM.
So, we are now at the point of waiting for the donor stem cells to find their way into my bone marrow, engraft, and start working!
As I am writing this on Tuesday it is now day "1" and I must admit I have a lighter step and know that my new journey begins! I expect to be at Barnes 4-6 weeks for my cells to recover fully; afterwards, we'll remain in St. Louis for an indefinite amount of time. My new journey is bound to have its ups and downs but knowing how supportive everyone is has made the up days outnumber the down days!
Yesterday was exciting because they have a board at the nurse's station stating what time each patient's stem cells are meant to arrive. Once the courier and the stem cells arrive at the international airport at Lambert Field they come to Barnes by medical helicopter. They then go to the stem cell lab for processing and counting and then come up to the floor. My stem cells were scheduled to arrive at 10 PM and then late in the afternoon my nurse informed me that they were able to catch an earlier flight and were meant to arrive at 8:30 PM! They were processed straight away and they were done running in to me by 10 PM.
So, we are now at the point of waiting for the donor stem cells to find their way into my bone marrow, engraft, and start working!
As I am writing this on Tuesday it is now day "1" and I must admit I have a lighter step and know that my new journey begins! I expect to be at Barnes 4-6 weeks for my cells to recover fully; afterwards, we'll remain in St. Louis for an indefinite amount of time. My new journey is bound to have its ups and downs but knowing how supportive everyone is has made the up days outnumber the down days!
Sunday, November 20, 2011
Some jokes to pass the time
Here are some sentences as typed by medical secretaries at the National Health Service, Glasgow, sent to me by my dear friend Carol in Scotland. A few of these sentences have been modified slightly by Stephen to fit my situation.
1. Patient has left her white blood cells at another hospital.
2. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.
3. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.
4. On the second day the hip was better and on the third day it disappeared.
5. The patient is tearful and crying constantly. She also appears to be depressed.
6. The patient has been depressed since she began seeing me.
7. Discharge status: Alive, but without my permission.
8. Healthy appearing 52-year old female, mentally alert, but forgetful.
9. She is numb from her toes down.
10. While in the hospital, she was examined, x-rated and sent home.
11. The skin was moist and dry.
12. Occasional, constant infrequent nausea.
13. Patient was alert and unresponsive.
14. She stated that she had been constipated until her husband left the room.
15. I saw your patient today, who is still under our care for physical therapy.
16. Both breasts are equal and reactive to light and accommodation.
17. The lab test indicated abnormal lover function.
18. Skin: somewhat pale, but present.
19. The bone marrow biopsy will be done later on the floor.
20. Large brown stool ambulating in the hall.
21. Patient has three teenage children, but no other abnormalities.
22. When she fainted, her eyes rolled around the room.
23. Between you and me, we ought to be able to get this lady pregnant.
24. She slipped on the floor and apparently her legs went in separate directions in early November.
25. Patient was seen in consultation by her doctor, who felt we should sit on the abdomen and I agree.
1. Patient has left her white blood cells at another hospital.
2. Patient's medical history has been remarkably insignificant with only a 40 pound weight gain in the past three days.
3. She has no rigors or shaking chills, but her husband states she was very hot in bed last night.
4. On the second day the hip was better and on the third day it disappeared.
5. The patient is tearful and crying constantly. She also appears to be depressed.
6. The patient has been depressed since she began seeing me.
7. Discharge status: Alive, but without my permission.
8. Healthy appearing 52-year old female, mentally alert, but forgetful.
9. She is numb from her toes down.
10. While in the hospital, she was examined, x-rated and sent home.
11. The skin was moist and dry.
12. Occasional, constant infrequent nausea.
13. Patient was alert and unresponsive.
14. She stated that she had been constipated until her husband left the room.
15. I saw your patient today, who is still under our care for physical therapy.
16. Both breasts are equal and reactive to light and accommodation.
17. The lab test indicated abnormal lover function.
18. Skin: somewhat pale, but present.
19. The bone marrow biopsy will be done later on the floor.
20. Large brown stool ambulating in the hall.
21. Patient has three teenage children, but no other abnormalities.
22. When she fainted, her eyes rolled around the room.
23. Between you and me, we ought to be able to get this lady pregnant.
24. She slipped on the floor and apparently her legs went in separate directions in early November.
25. Patient was seen in consultation by her doctor, who felt we should sit on the abdomen and I agree.
Saturday, November 12, 2011
Starting a new journey
Just heard last night that I have a donor for my stem-cell transplant! I will be heading back to Barnes to begin my "Conditioning" chemotherapy tomorrow, Sunday. It is a seven day chemo, one day of rest and then I receive the stem-cells and recover in hospital. I should be at Barnes for 4-6 weeks and then in St Louis for an undetermined amount of time.
Thank you all for your continued support, it truly means so much!
Thank you all for your continued support, it truly means so much!
Wednesday, November 9, 2011
When it Rains it Pours!
I was cautiously optimistic yesterday as each hour passed until I could finally state that I had been fever free for 24 hours. My counts came back dramatically and I was hopeful that one more day of being fever free while they took me off my antibiotics and antifungal meds that I could be discharged and go home the following day - which would be tomorrow November 10th. I did pass a fever free day again today, my counts continue to improve and if all goes well tonight I will be coming home tomorrow - hooray!
Now, as I am prone to check and double check on all aspects of my care, when I was speaking to the Donor Search Coordinator yesterday afternoon, she did say that they have a donor whose blood work results will be known on Friday November 11th, and if they are fine, I will need to begin a "Conditioning" chemotherapy regime to begin my stem-cell transplant process on Sunday November 13th! What news! What a whirlwind! I would be home for two and a half days before starting the next chapter in this incredible journey. I am keeping my fingers and toes crossed that this donor will pass the medical exam and we can get started on a new Blog post!
Deborah, in rainy, windy St Louis!
Now, as I am prone to check and double check on all aspects of my care, when I was speaking to the Donor Search Coordinator yesterday afternoon, she did say that they have a donor whose blood work results will be known on Friday November 11th, and if they are fine, I will need to begin a "Conditioning" chemotherapy regime to begin my stem-cell transplant process on Sunday November 13th! What news! What a whirlwind! I would be home for two and a half days before starting the next chapter in this incredible journey. I am keeping my fingers and toes crossed that this donor will pass the medical exam and we can get started on a new Blog post!
Deborah, in rainy, windy St Louis!
Sunday, November 6, 2011
Turning the clocks back
I heard from several people who attended the Bone Marrow Donation Drive at Sinai Temple last Sunday that the turn out was fabulous and that the director from the Community Blood Services of Illinois said it was the largest turnout that she had worked. Thanks to everyone who attended, I really appreciate your time and effort to register with the NMDP and become a potential match for myself or someone else in the future. Also, if you were not able to attend, there will be a donor drive on campus, 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
When contemplating changing the clocks back an hour last night, the first thing I thought about was when will I take my 2:00AM Meds?? In addition to 2AM vital signs, I currently have two IV antibiotics, one after the other, each taking an hour to infuse. Well, there was a choice, I could carry on as usual at 2AM or wait an hour. I opted to take them at 2AM hoping I would get an extra hour of sleep afterward. Good idea, but spiking a fever of course changed my well intentioned idea of sleeping through that precious "extra hour". Ah well, I am hoping that my counts will come back in a few days and the fevers will then be gone!
I have a view from my room that faces north so I can enjoy the illuminated Chase Park Plaza Hotel each night. It was quite foggy early Friday morning and the fog covered the entire lower half of the hotel tower so it appeared that the tower was floating above the ground, quite a unique sight!
On the food front, I discovered today that the Buttermilk Biscuits are perfect with butter and jam providing a few more calories than toast. Also on the food front, thanks again to everyone who provided meals, bagels and groceries, I know how much Stephen, my mum, and Saul appreciate your time and energy to help!
Deborah
This link has the announcement information:
http://marrow.org/Pages/DonorDriveSearch.aspx?key=105-4-00193
When contemplating changing the clocks back an hour last night, the first thing I thought about was when will I take my 2:00AM Meds?? In addition to 2AM vital signs, I currently have two IV antibiotics, one after the other, each taking an hour to infuse. Well, there was a choice, I could carry on as usual at 2AM or wait an hour. I opted to take them at 2AM hoping I would get an extra hour of sleep afterward. Good idea, but spiking a fever of course changed my well intentioned idea of sleeping through that precious "extra hour". Ah well, I am hoping that my counts will come back in a few days and the fevers will then be gone!
I have a view from my room that faces north so I can enjoy the illuminated Chase Park Plaza Hotel each night. It was quite foggy early Friday morning and the fog covered the entire lower half of the hotel tower so it appeared that the tower was floating above the ground, quite a unique sight!
On the food front, I discovered today that the Buttermilk Biscuits are perfect with butter and jam providing a few more calories than toast. Also on the food front, thanks again to everyone who provided meals, bagels and groceries, I know how much Stephen, my mum, and Saul appreciate your time and energy to help!
Deborah
Thursday, November 3, 2011
Still at Barnes
I mentioned in my last post that I planned to stay at Barnes for six days but packed for thirty. The factor determining the length of my stay is whether or not I get a fever, which of course I spiked several. So I am here until my counts "recover," that is until those fabulous germ fighting neutrophils come back.
I remember thinking when I was here in September that if I returned in October that St Louis might be hosting the World Series. Well, it was an exciting week and everyone's passion was clear. One of the inventory people provided me with daily, in depth and detailed analysis after every game and he had his own unique take on the La Russa phone conversation in the dugout regarding pitchers. Many nurses wore Cardinals gear every day. On game days the mood was tense with anticipation and excitement. When St Louis lost game four to the Rangers, one of the nurses was sure it was because she did not wear her "Pujols" shirt. After game six at 2AM I asked my nurse who finally won, and she started dancing in my room! Game seven was a treat for all and I was able to enjoy it on my 10" hospital television screen.
I had a phone call from a reporter at the St Louis Post-Dispatch who was doing a story on drug shortages nationwide. I shared my story regarding my first induction chemotherapy back in June; you can read it here:
St. Louis Post-Dispatch, Scarcity of drugs alarms doctors in St. Louis and nationwide, with me cited!
Last weekend Stephen and I enjoyed my cousin Meredith's visit immensely, who travelled all the way from New York and then had to return to a snow storm and no power. It has also been wonderful to visit with Jenny and Alana whenever they are free.
On the food front, I have been enjoying toast and jam with every meal, as well as chocolate milk heated up in a mug. Although not as many calories per serving are provided, hot chocolate milk sure tastes better than Ensure, Boost, or Carnation products.
Speaking of food, thanks to everyone as always for providing
meals/shopping for the family in Urbana. It really is a tremendous help and we greatly appreciate all your efforts on our behalf.
I remember thinking when I was here in September that if I returned in October that St Louis might be hosting the World Series. Well, it was an exciting week and everyone's passion was clear. One of the inventory people provided me with daily, in depth and detailed analysis after every game and he had his own unique take on the La Russa phone conversation in the dugout regarding pitchers. Many nurses wore Cardinals gear every day. On game days the mood was tense with anticipation and excitement. When St Louis lost game four to the Rangers, one of the nurses was sure it was because she did not wear her "Pujols" shirt. After game six at 2AM I asked my nurse who finally won, and she started dancing in my room! Game seven was a treat for all and I was able to enjoy it on my 10" hospital television screen.
I had a phone call from a reporter at the St Louis Post-Dispatch who was doing a story on drug shortages nationwide. I shared my story regarding my first induction chemotherapy back in June; you can read it here:
St. Louis Post-Dispatch, Scarcity of drugs alarms doctors in St. Louis and nationwide, with me cited!
Last weekend Stephen and I enjoyed my cousin Meredith's visit immensely, who travelled all the way from New York and then had to return to a snow storm and no power. It has also been wonderful to visit with Jenny and Alana whenever they are free.
On the food front, I have been enjoying toast and jam with every meal, as well as chocolate milk heated up in a mug. Although not as many calories per serving are provided, hot chocolate milk sure tastes better than Ensure, Boost, or Carnation products.
Speaking of food, thanks to everyone as always for providing
meals/shopping for the family in Urbana. It really is a tremendous help and we greatly appreciate all your efforts on our behalf.
Saturday, October 22, 2011
Back at Barnes again...
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
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
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?
Monday, September 26, 2011
Still at barnes...
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.
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.
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
Wednesday, August 24, 2011
Discharged!
No, you did not misread the title of this post - "Discharged!" As surprised as some of you may be, I was even more surprised how fast it all came about. On Saturday evening I found out that my "counts", neutrophils (the germ fighting cells) had started to come back as of the day before. The Dr came in Sunday morning to tell me that he would be cutting back my antibiotics and if I stayed fever free I would be discharged on Wednesday. I could not believe it, I felt so awful on Sunday, how could this be? Well, as the antibiotics were cut back, I did stay fever free, felt a bit better and I was discharged a few hours ago. Stephen and I are staying in St. Louis for the moment because my counts are still recovering and I am still at risk for infections, pretty weak and tired too. I do need to be here for my labs and bone marrow aspiration on Tuesday; the results of which will then determine what happens next.
I must say that I enjoyed a great double shabbat with Stephen in St Louis Skyping with my mom and Saul, and then a few hours later Gene, Julia, and Daniel and I made shabbat again! On Saturday, Kelly and Kurt drove down for the afternoon and that was quite a treat! Unfortunately, I was not in shape for a visit from Kari and Eli on Sunday. I did resolve and was able to visit with Mac and Ann who came to visit me yesterday afternoon and we enjoyed a lovely visit!
So, for the moment communicating by email is best because I am not sure where I will be between now and Tuesday.
Stay tuned...
Deborah
I must say that I enjoyed a great double shabbat with Stephen in St Louis Skyping with my mom and Saul, and then a few hours later Gene, Julia, and Daniel and I made shabbat again! On Saturday, Kelly and Kurt drove down for the afternoon and that was quite a treat! Unfortunately, I was not in shape for a visit from Kari and Eli on Sunday. I did resolve and was able to visit with Mac and Ann who came to visit me yesterday afternoon and we enjoyed a lovely visit!
So, for the moment communicating by email is best because I am not sure where I will be between now and Tuesday.
Stay tuned...
Deborah
Monday, August 15, 2011
A few firsts!
Since my last post I have sorted out the low heart rate which was caused by one of the chemo drugs. While I was hooked up to a portable heart monitor, I carried it around in a cheery pink floral bag that Alana made for me earlier this summer during one of her projects with the kids at Children's Hospital where she volunteers. I must say though, carrying it around 24/7 brought back memories of the Ruth Buzzi and Arte Johnson skit "old woman, Gladys Ormphby, with the purse" on Rowan and Martin's Laugh In! Here is a link to the skits:
http://www.youtube.com/watch?v=aaJ-HmfAnJM
I was also able to loose the 30lbs of water that I gained in 3 days after the second chemo with the aid of diuretics and keeping my feet up. My legs progressed from the size of elephants, to Brown Swiss Cows, to Holsteins, to Jersey Cows! Amazing how one's body can expand and contract in the time of a week! Good thing I had a pair of adjustable slip-on shoes to
accommodate the ever changing girth of my feet!
A week ago Friday I had the great pleasure of visiting with Kari and Leah who brought wonderful challah and shabbat treats! Leah is a doctoral student here at Washington University in St Louis and I really enjoyed learning all about her project. Karen and Julie came down last week as well and it was wonderful to catch up on all their summer news and Julie's upcoming study abroad in one of my absolute favorite cities: Edinburgh!
Stephen and Daniel arrived Thursday afternoon to spend the weekend and I was thrilled to hear all about Daniel's canoe trip to Quetico; and was especially pleased that he was able to experience some of Stephen and my favorites: Loons, aurora borealis and wild blueberries; not to mention swimming every day of course!
Freda was also a pleasant surprise on Thursday afternoon. She told us all about the amazing lunch she enjoyed in Effingham at the "Firefly Grill." They have their own farm produce and also procure what they do not grow from local farms. Believe it or not this gem is tucked away just behind the Starbucks.
If you do not know already, I adore food and flavor! I was really
surprised to find at the point just before my second chemo that I was enjoying a heightened sense of taste. So much so, that each bite of the same food, meal after meal, still tasted delicious! After my second chemo that has all changed. One week ago I hit a food flavor wall! I could not fathom eating anything I had been, it all started to taste the same. Luckily, Saul and Stephen were visiting and I sent them off to Schnuck's in search of any and all types of sauces that I could add to my meals for flavor. They returned with a variety of things which I worked through over several days to figure out what would agree with me. We hit upon some fabulous sliced, sun dried tomatoes in olive oil, and a company called Cibo Naturals that makes a variety of fresh pesto sauces and tapenades. We even discovered that cream cheese schmears from Einstein Bros. is also a satisfying flavor enhancer for pasta.
This week I was able to taste sweets again and it is a timely change as I had to give up my two beautiful bowls of oatmeal in the morning, which I thoroughly enjoy, for one bowl and an Odwalla mega protein drink! The funny thing is that it tastes just like "Bosco!" For those of you who have never heard of Bosco, think Hershey's.
Since I was able to taste sweets, I was also able to enjoy a special treat this weekend from the frozen yogurt shop "Chill", compliments of Alana and Jenny: cookies and cream with salted caramel - oh it was divine!
This past Saturday Daniel and Stephen wheeled me around the Siteman Center, which is attached to Schoenberg Pavilion and empty on the
weekends. We even ventured outside for a little while; and although temperatures were moderate for St Louis, the mask I need to wear heats up pretty fast, so it was hard to be out for long. We did revisit the 14th floor of the Siteman Center where we watched the Fireworks on July 4th, and the view remains phenomenal! On Sunday I walked with Stephen to the Siteman elevators and walked on the 14th floor unaided! We spied Alana and Daniel coming out of Panera across the street and, with the help of our cell phones, they were able to see us waving to them!
So, we are +day 18 from my second chemo, when my counts recover, we will see what is next, may take a couple more weeks though.
As always, thank you to everyone who is helping our family in Urbana, we greatly appreciate all your support!
Love,
Deborah
Saturday, August 6, 2011
Family Visitors from Toronto!
This weekend was very special for us. Stephen's brother David, and my neice and nephew Alora and Mitchel visited us from Toronto! They arrived Thursday, driving all the way from Chicago's Midway Airport. They spent a good part of their visit with me in the hospital; otherwise, they were visiting St. Louis with Alana and Saul. Today's guest blogger is David.
Well here we are at Barnes Jewish Hospital in St Louis - i guess i never really thought we would ever be visiting this city, especially in the dog days of summer. but here we are! hanging out with our family and supporting deborah through these difficult times. my impression about this disease is that it is a long process with so many variables- i confess, i don't know much about the specifics but we are sharing information and hoping for successful results from the 2nd round of chemo. The hospital is impressive as they even have valet parking! as well, the staff at the hospital are amazing... family and friends have been so supportive, and loving. stephen, alana and saul are here and there is such a positive vibe in the room. we missed daniel but i'm sure he is having a great time in quetico. as for st louis, everyone we have met has been super friendly- i cycled around forest park this morning and have been ingesting a lot of carbs thanks to saul and mitchel. (i think the hospital scale is off by 10lbs). alora and alana went out last night but they have been pretty tight lipped about it, the only clue is alora has been wearing sunglasses inside! we are leaving tomorrow morning and hope to stay in touch on the blog...love david, midgey, and alora.
 |
| David, me, Mitchel and Alora |
Thursday, August 4, 2011
In Praise of mothers
Mothers are a special breed of people. When they hear their children need them, at any age, they drop what they are doing and rush to help. Stephen's mother Georgina and my mother Nancy have done just that during this difficult time for our family. Both Georgina and Nancy lead lives full of activities; they sorted out their schedules and they arrived; Nancy first for two weeks and Georgina just spent an entire month in Urbana. Nancy is returning soon.
A month is a fair amount of time to take out of one's schedule and we really appreciate everything Georgina did - from the regular housework chores, lawn care, extra projects in the house, to sorting Saul's busy schedule with rides to all his activities, making sure Daniel did not ride his bike to appointments 5 miles away (because it increased my stress level), and teaching Saul and Daniel the finer points of how to dust and vacuum their rooms while she carried the bulk of the housework. Moms, thank you for everything, we love you!!
A month is a fair amount of time to take out of one's schedule and we really appreciate everything Georgina did - from the regular housework chores, lawn care, extra projects in the house, to sorting Saul's busy schedule with rides to all his activities, making sure Daniel did not ride his bike to appointments 5 miles away (because it increased my stress level), and teaching Saul and Daniel the finer points of how to dust and vacuum their rooms while she carried the bulk of the housework. Moms, thank you for everything, we love you!!
Wednesday, August 3, 2011
Ding, ding, ding, out of your corner for round two!
After my bone marrow last Thursday I was sure I would have had the weekend to continue getting stronger before I knew the results. However, Friday night, just as I was enjoying a skype shabbat with Stephen, Daniel, and Georgina the Dr came in. My results showed that my leukemia was resistant to the first round of chemo, higher % blasts and lower % cellularity than expected and so I started my second round of induction chemo that night. My second round of chemo was a new cocktail called MEC (Mitoxantrone, Etoposide, and high dose Cytarabine) given over 5 days; my last dose was Tuesday night.
My next bone marrow will be when my counts recover, sometime toward the end of August, and at that point if I do have a remission, I can leave the hospital but not St. Louis and will be on a faster track for a stem cell transplant. If I am not in remission, I will go right into a stem cell transplant.
My cousin Barbara, who is an artist, created a unique hat out of the net bags that you would buy oranges and lemons in. So with my new hat I was ready to ride the roller coaster of my second round! The first two days went rather well, unfortunately on the third day I had a fever. Woke up the next day with swelling and ended up with a low heart rate, both of which are in the process of being sorted out. I also received a fabulous hat and scarf from my friend Kelly that I was using the first two days to walk the hallways. Ladies, thank you for keeping me looking my best during my second chemo-makeover, I am a real hit on the hallway runway.
I am going to try to watch Barcelona play Chivas de Guadalajara tonight and I will be wearing my Puyol jersey!
As always, I thank all of you for supporting us in Urbana which continues to give our family strength during this difficult time.
Deborah
P.S. Check out Saul's post just below mine.
My next bone marrow will be when my counts recover, sometime toward the end of August, and at that point if I do have a remission, I can leave the hospital but not St. Louis and will be on a faster track for a stem cell transplant. If I am not in remission, I will go right into a stem cell transplant.
My cousin Barbara, who is an artist, created a unique hat out of the net bags that you would buy oranges and lemons in. So with my new hat I was ready to ride the roller coaster of my second round! The first two days went rather well, unfortunately on the third day I had a fever. Woke up the next day with swelling and ended up with a low heart rate, both of which are in the process of being sorted out. I also received a fabulous hat and scarf from my friend Kelly that I was using the first two days to walk the hallways. Ladies, thank you for keeping me looking my best during my second chemo-makeover, I am a real hit on the hallway runway.
 |
| Ready to ride the roller coaster with my new hat from Barbara! |
I am going to try to watch Barcelona play Chivas de Guadalajara tonight and I will be wearing my Puyol jersey!
As always, I thank all of you for supporting us in Urbana which continues to give our family strength during this difficult time.
Deborah
P.S. Check out Saul's post just below mine.
Crazy Train
A few days ago, I woke up quite sore, but not the usual aches and pains that accompany waking up the day after a grueling soccer game; this was a different beast entirely. The previous day, I had helped Daniel clean the entire house, a necessary chore that had probably been neglected for far too long. We vacuumed carpets, wiped floors, washed kitchen counters, cleaned windows, cut the lawn, watered the plants, even picked the clothes off the floors of our respective rooms. And from these various tasks not only did we gain a tidy house and sore bodies, but a deeper respect for all the work mom does for the family and house that is oft overlooked.
As you can tell I am not acclimated to all the ins and outs of house work, but it is just another thing to familiarize myself with during these crazy times. A few goals I have:
- Learning what every button on the washing machine means
-Figure out which attachment goes on the end of the vacuum
-How to prepare a meal besides cereal
However, the true documentation that shows that everything is not as it usually is happens to be a photo of mom from a few weeks ago. It has taken much begging and convincing to let her release the photo to the blogosphere, but eventually she agreed that the additional views and energy it would add to the blog would be worth it. Enjoy this once and a lifetime opportunity to view Deborah with a mohawk! A symbolic haircut that according to wikipedia is associated with punk rock subculture and anti-authoritarian beliefs! Imagine, my own mom, who won't even wear blue jeans, pledging her allegiance to a league of such influential anarchistic icons with her coiffure such as:
-Ramones
-Sex Pistols
-Mr. T
-David Beckham?
All in all, in the words of another counterculture muse, "The times they are a-changing." All we can do change with them and continue living and learning, and enjoying the little moments, such as giving your mom a mohawk!
Saul
As you can tell I am not acclimated to all the ins and outs of house work, but it is just another thing to familiarize myself with during these crazy times. A few goals I have:
- Learning what every button on the washing machine means
-Figure out which attachment goes on the end of the vacuum
-How to prepare a meal besides cereal
However, the true documentation that shows that everything is not as it usually is happens to be a photo of mom from a few weeks ago. It has taken much begging and convincing to let her release the photo to the blogosphere, but eventually she agreed that the additional views and energy it would add to the blog would be worth it. Enjoy this once and a lifetime opportunity to view Deborah with a mohawk! A symbolic haircut that according to wikipedia is associated with punk rock subculture and anti-authoritarian beliefs! Imagine, my own mom, who won't even wear blue jeans, pledging her allegiance to a league of such influential anarchistic icons with her coiffure such as:
-Ramones
-Sex Pistols
-Mr. T
-David Beckham?
All in all, in the words of another counterculture muse, "The times they are a-changing." All we can do change with them and continue living and learning, and enjoying the little moments, such as giving your mom a mohawk!
Saul
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| Rockstarr! |
Friday, July 29, 2011
Busy Week
Each day since my last post we have patiently been waiting for my bone marrow to start producing neutrophils, which are critical to fighting germs of all kinds. Back to that at the end of this post. In the meantime, I have changed rooms two more times, getting a good view of three floors and four rooms since I have arrived here, all the floors are within the Bone Marrow Transplant Unit.
Early last Friday (July 22) morning, I was with my nurse and fainted. What transpired immediately afterward was nothing short of amazing and not for the feint of heart. A tag team of bustling nurses orchestrated ever so calmly by the Doctor on the floor mobilized into action to stabilize me and take cultures, etc. When the X-Ray machine appeared I was happy to see a familiar face who is an Illini basketball fan and I was able to utter: "Dee for three!" - he gave me the thumbs up and he knew I was OK. Once stabilized, I moved floors to an ICU room. By the end of the day all tests, cultures, etc. were negative and Alana, Stephen and I enjoyed a lovely shabbat with the glow of the lights against the window.
My new room had a lazy boy that was wide enough for Stephen and I to fit in, and had a little couch. This was a great improvement over pulling two rather uncomfortable chairs together. The unexpected bonus was that my room faced the Greek Orthodox Church and on Saturday there was a wedding! This provided the three of us with hours of entertainment and anticipation of seeing the bride and groom emerge from the church into wedded bliss! OK, to be honest, Alana and I just wanted to see the bride in her gown and the attendants' outfits as well. At the very end of the day it was only Stephen who actually viewed the bride and groom!
I continued to improve so much on Sunday morning that by lunch time I was ready to venture my first food item outside of the hospital: Raconelli"s Calzone; it was so delicious! I have since learned, however, that starting small is a much better strategy than letting my chemo-makeover taste buds dictate how much I should consume.
Unfortunately, after lunch I spiked a fever and by Monday afternoon noticed a lump in the back of my left calf, after a few hours it became large and angry, and then all of a sudden one appeared on the back of my right calf, then the back of each thigh. I felt as though I was transforming into a New Superhero in the line-up of Marvel Comic Characters! Of course, Tuesday morning brought the dermatology biopsy brigade, a change in antibiotics/anti-fungals and a new room on a new floor. Each day my bumps have improved, unfortunately, I have not noticed any lingering Superhero Character traits as of yet!
Pending results from a bone marrow yesterday will let us know where we stand as far as whether a second Induction Chemotherapy will be needed or not. It was a busy week, looking forward to the adventures next week will bring!
Early last Friday (July 22) morning, I was with my nurse and fainted. What transpired immediately afterward was nothing short of amazing and not for the feint of heart. A tag team of bustling nurses orchestrated ever so calmly by the Doctor on the floor mobilized into action to stabilize me and take cultures, etc. When the X-Ray machine appeared I was happy to see a familiar face who is an Illini basketball fan and I was able to utter: "Dee for three!" - he gave me the thumbs up and he knew I was OK. Once stabilized, I moved floors to an ICU room. By the end of the day all tests, cultures, etc. were negative and Alana, Stephen and I enjoyed a lovely shabbat with the glow of the lights against the window.
My new room had a lazy boy that was wide enough for Stephen and I to fit in, and had a little couch. This was a great improvement over pulling two rather uncomfortable chairs together. The unexpected bonus was that my room faced the Greek Orthodox Church and on Saturday there was a wedding! This provided the three of us with hours of entertainment and anticipation of seeing the bride and groom emerge from the church into wedded bliss! OK, to be honest, Alana and I just wanted to see the bride in her gown and the attendants' outfits as well. At the very end of the day it was only Stephen who actually viewed the bride and groom!
I continued to improve so much on Sunday morning that by lunch time I was ready to venture my first food item outside of the hospital: Raconelli"s Calzone; it was so delicious! I have since learned, however, that starting small is a much better strategy than letting my chemo-makeover taste buds dictate how much I should consume.
Unfortunately, after lunch I spiked a fever and by Monday afternoon noticed a lump in the back of my left calf, after a few hours it became large and angry, and then all of a sudden one appeared on the back of my right calf, then the back of each thigh. I felt as though I was transforming into a New Superhero in the line-up of Marvel Comic Characters! Of course, Tuesday morning brought the dermatology biopsy brigade, a change in antibiotics/anti-fungals and a new room on a new floor. Each day my bumps have improved, unfortunately, I have not noticed any lingering Superhero Character traits as of yet!
Pending results from a bone marrow yesterday will let us know where we stand as far as whether a second Induction Chemotherapy will be needed or not. It was a busy week, looking forward to the adventures next week will bring!
Wednesday, July 20, 2011
Celebrations!
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| Deborah, Jenny, Gary, Diane and Alana admiring the cupcakes |
Cousin Jenny spent part of her day celebrating her milestone 30th birthday with myself, Alana, Diane and Gary, and Beau, here in my room. In the morning, Diane braved 100+ F temperatures to secure a beautiful selection of cupcakes from the "Cupcakery" here in the Central West End.
This morning my mouth sores were so decreased that I was certain I could venture a taste of the special birthday treats. I started off wisely with a piece of vanilla with vanilla frosting but realized I could not really taste anything - although the "crumb" of the cupcake was superb. Gary discovered the coffeecake cupcake which he determined to be his favorite. I followed suit and was so pleasantly surprised that I could actually taste the sweet cinnamon flavor that I am so fond of and was thrilled to know that my first "treat" coincided with Jenny's special day!
To add to the entire festive day, I also enjoyed a visit from Gene Robinson and Barbara Bair today! What a party day!
Just before Jenny's party started, I found out that my day 21 bone marrow biopsy showed that I do not need a second induction chemotherapy treatment at this time. So, the plan is to let my counts recover and then do another bone marrow biopsy to see what will be next. How long this will be I am not sure - but I am here and happy to be moving along in this direction.
Tuesday, July 19, 2011
Surrounded by a sea of soap
One of the morning routines is the "cleaning of the room". Sunday morning I was brushing my teeth in the sink which happens to be in my room and the cleaner accidentally dropped a large bottle of soap which encircled me. She did not seem to think much about it and went on to start cleaning the bathroom. When I pointed out that the puddle was about to hit my suitcase she started to wipe it up, but then left mid-task and continued cleaning the bathroom. I pointed out to her that I was surrounded by the soap and could not move. She then did manage to get it all up and I retreated to the safety of my "High and Dry" bed. Needless to say all the extra soap on the floor contributed to a beautiful cleaning that day!
These past few days have resulted in sorting out my swelling - I can see my toes and ankles once again! I have been fortunate to be able to stay on a drug that helps suppress my rigors and fevers and so have been able to hydrate, eat, and even get some rest. This has helped my digestive tract move along in the right direction enabling me to gain a bit of nutrition. My nurses have been excellent the last few nights at organizing all the meds and vitals, so that I have a 3hr block of time between 2AM and 5AM where I can get some sleep. I then nap on and off until 7Am when the daily routine starts.
When I related the news about my AML to a dear friend and Arsenal fan, I told him I was going to be like Puyol, my favorite player on my favorite team FC Barcelona: the best offensive-defender that I know. He ever so kindly sent me a Puyol jersey and it has become my hall-walking shirt. I made 5 laps around two days in a row (yes, Puyol's #5 did motivate me to get 5 laps in), 7 yesterday, and 6 today - amazing how wearing a jersey can be so motivating to move down the hall!
Here are photos of myself and my cousin Gary and his wife Diane visiting from NY; also notice the colorful cap that my dear friend Barbara Welz in Germany knitted in a jiffy and sent for me to wear:
So my day 14 bone marrow result showed 10% blasts and I had another bone marrow last Friday. The results should be known tomorrow. If there are leukemia cells I will undergo a second induction Chemotherapy with different drugs than the first time, and be on a faster track to a bone marrow transplant. If not leukemic, they will let my counts recover and then start consolidation chemotherapy with a bone marrow transplant farther out.
Love, hugs and so many thanks to all of you for your support, it truly makes a difference for us and I can not thank you enough!
These past few days have resulted in sorting out my swelling - I can see my toes and ankles once again! I have been fortunate to be able to stay on a drug that helps suppress my rigors and fevers and so have been able to hydrate, eat, and even get some rest. This has helped my digestive tract move along in the right direction enabling me to gain a bit of nutrition. My nurses have been excellent the last few nights at organizing all the meds and vitals, so that I have a 3hr block of time between 2AM and 5AM where I can get some sleep. I then nap on and off until 7Am when the daily routine starts.
When I related the news about my AML to a dear friend and Arsenal fan, I told him I was going to be like Puyol, my favorite player on my favorite team FC Barcelona: the best offensive-defender that I know. He ever so kindly sent me a Puyol jersey and it has become my hall-walking shirt. I made 5 laps around two days in a row (yes, Puyol's #5 did motivate me to get 5 laps in), 7 yesterday, and 6 today - amazing how wearing a jersey can be so motivating to move down the hall!
Here are photos of myself and my cousin Gary and his wife Diane visiting from NY; also notice the colorful cap that my dear friend Barbara Welz in Germany knitted in a jiffy and sent for me to wear:
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| Diane and the backside of my new Barca jersey and my new knitted hat! |
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| Me and my cousin Gary |
So my day 14 bone marrow result showed 10% blasts and I had another bone marrow last Friday. The results should be known tomorrow. If there are leukemia cells I will undergo a second induction Chemotherapy with different drugs than the first time, and be on a faster track to a bone marrow transplant. If not leukemic, they will let my counts recover and then start consolidation chemotherapy with a bone marrow transplant farther out.
Love, hugs and so many thanks to all of you for your support, it truly makes a difference for us and I can not thank you enough!
Wednesday, July 13, 2011
From Fever Free to Fire!
Just when you think you have nothing truly exciting to blog about, something exciting occurs. I experienced my first 24 hours without a fever in 10 days today and have made some progress in getting my other vascular system issues under control.
My week of chemotherapy was not too bad in comparison to the week that followed -- basically a week of constant, daily fevers, shakes, GI bleeds, diarrhea, etc. I started to get some control of things last Saturday, and last night was my first one fever free. The GI bleed also seems to be under control. Now, I am swollen like a 9 month pregnant female! Amazing one's belly can still swell up! I need to really keep my legs up above my heart to limit swelling. I must say though that through all of this my care from both doctors and nurses has been outstanding.
Stephen and the boys clipped all my hair off last Saturday. I had felt like a cat with fur balls for several days as my hair was falling out. Saul delighted in giving me a Mohawk and then taking it off section by section slowly - it was great "family fun!" I now wear a beautiful Patagonia pink cap that Lynn picked out for me at Champaign Surplus. I also just received in the mail a hand knitted cap from a friend in Germany who is a breast cancer survivor.
Stephen has been back and forth, really doing so, so much. Alana comes each day and we usually have time to snuggle in my bed and watch an episode of "Fawlty Towers," a John Cleese production from the 70's which is wildly hysterical and always makes us giggle.
Anyway, last night Stephen wanted to see if my TV got ESPN, for he wanted us to watch the Women’s World Cup soccer match between USA and France today. The TV had not been turned on since my arrival. When he turned the TV on, something popped and a great cloud of smoke was released! The TV then sparked and flames came out the back! The room quickly filled with electrical smoke. Stephen called the front desk, yelling out “Fire!” The staff ran down, evacuated me and my IV pole from the room and then a parade of other people began. A very tall gentleman and former firefighter from the front desk came down, unplugged the TV and checked the wall behind it for burns. Maintenance came, security came, and the clinical maintenance man who says he takes care of all electrical components arrived to verify the situation. In the meantime, Stephen, a nurse, and two techs emptied the room and moved me down the hall to a new room –7913! So, my telephone number has now also changed.
A lot more exciting things happened this week: (1) a visit from my cousin Wendy and her husband Matt; (2) a visit from our colleagues Mary Ann and Brenda, who were here in St. Louis at a Botany conference; (3) a visit from Jenny and her friend Beau; (4) a gift of a beautiful handmade quilt from Stephen’s Aunt Doreen who lives in Arundel, Quebec; and (5) Saul’s participation in a Wash U soccer camp, where he was asked to join the All Star team and even scored a goal! At home, the boys and grandma continuously enjoy the various foods and groceries brought to them by members of our ever generous community and we want to thank all of you for helping us during this time.
My week of chemotherapy was not too bad in comparison to the week that followed -- basically a week of constant, daily fevers, shakes, GI bleeds, diarrhea, etc. I started to get some control of things last Saturday, and last night was my first one fever free. The GI bleed also seems to be under control. Now, I am swollen like a 9 month pregnant female! Amazing one's belly can still swell up! I need to really keep my legs up above my heart to limit swelling. I must say though that through all of this my care from both doctors and nurses has been outstanding.
Stephen and the boys clipped all my hair off last Saturday. I had felt like a cat with fur balls for several days as my hair was falling out. Saul delighted in giving me a Mohawk and then taking it off section by section slowly - it was great "family fun!" I now wear a beautiful Patagonia pink cap that Lynn picked out for me at Champaign Surplus. I also just received in the mail a hand knitted cap from a friend in Germany who is a breast cancer survivor.
Stephen has been back and forth, really doing so, so much. Alana comes each day and we usually have time to snuggle in my bed and watch an episode of "Fawlty Towers," a John Cleese production from the 70's which is wildly hysterical and always makes us giggle.
Anyway, last night Stephen wanted to see if my TV got ESPN, for he wanted us to watch the Women’s World Cup soccer match between USA and France today. The TV had not been turned on since my arrival. When he turned the TV on, something popped and a great cloud of smoke was released! The TV then sparked and flames came out the back! The room quickly filled with electrical smoke. Stephen called the front desk, yelling out “Fire!” The staff ran down, evacuated me and my IV pole from the room and then a parade of other people began. A very tall gentleman and former firefighter from the front desk came down, unplugged the TV and checked the wall behind it for burns. Maintenance came, security came, and the clinical maintenance man who says he takes care of all electrical components arrived to verify the situation. In the meantime, Stephen, a nurse, and two techs emptied the room and moved me down the hall to a new room –7913! So, my telephone number has now also changed.
A lot more exciting things happened this week: (1) a visit from my cousin Wendy and her husband Matt; (2) a visit from our colleagues Mary Ann and Brenda, who were here in St. Louis at a Botany conference; (3) a visit from Jenny and her friend Beau; (4) a gift of a beautiful handmade quilt from Stephen’s Aunt Doreen who lives in Arundel, Quebec; and (5) Saul’s participation in a Wash U soccer camp, where he was asked to join the All Star team and even scored a goal! At home, the boys and grandma continuously enjoy the various foods and groceries brought to them by members of our ever generous community and we want to thank all of you for helping us during this time.
Tuesday, July 5, 2011
Oooooooouuuuuu! Aaaaaahhhhhh! But no popping sounds.
Happy belated July 4th to all (and to family in Canada, Happy July 1st)! Deborah and I spent July 4th watching fireworks from the 14th floor of the Center for Advanced Medicine at Barnes-Jewish Hospital. Near bedtime (for Deborah) the nurse came in the room and insisted that we go watch the fireworks. The 14th floor offers a panoramic view of the east side of the city, overlooking the St. Louis Arch and the Mississippi River. Deborah was unhooked from her IV, provided with a wheelchair, and for the first time in two weeks she left the confines of her floor. We actually thought we were doing something naughty – leaving the floor and all – but the nurses ensured us that the doctors would not mind. The venue provided an excellent view of the major fireworks display at the Arch, as well as no less than five other venues along the river where other firework celebrations were happening. While we saw the bursts and showers of the displays, we couldn’t hear the noise. All along the glass windows were other cancer patients, compete with nurses, technicians and family members, all enjoying a chance to escape from their room for 30 minutes or so. This was not like lying on our back at Dodds Park in Champaign watching the fireworks directly overhead, but nonetheless still quite enjoyable. And definitely unforgettable.
Saturday, July 2, 2011
Cooking with Alana
For those of you who don't know, Alana has an apartment in St. Louis. Last week, I brought the boys down to visit Deborah and, after our hospital visit, the three kids worked together to produce a fabulous stir-fry! Daniel prepared the ingredients, Alana helped cook, and Saul ate it all up!
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| Saul, Daniel and Alana admiring the extra sharp knife |
My Chemo Make-Over
Hello everyone, so sorry not to have been able to post any news this week, my chemo was a bit of a bear. It is still surreal to be here, what is real though is all the love and support all of you have provided us with! Thank you so much for everything!
This post starts with a recap from a few days ago:
Day 7 of the chemo should end tomorrow afternoon. I managed to have some control over the nausea and was able to eat a bit yesterday and today - cream of wheat cereal never tasted so good!
Hospital time, days go into nights and days. The other night about 3AM all the lights went on in my room and a Fellow came in asking if I was "Brezinski" and I said "No, I am Katz-Downie." He apologized profusely for the room error and I told him it was fine, it is like camp here or life in University dorms.
Nurses. Nurses are really unique individuals, they work incredibly hard to make the patient comfortable and never complain. I have experienced excellent care and they are truly there at all times when I need them to help with the smallest task or question.
Food service. Great! I enjoyed a little chicken soup from Kohn's Kosher, made to order blueberries and crushed ice, and the always delicious Cream of Wheat!
Finished my chemo yesterday afternoon; getting unhooked from my IV pole was quite a nice surprise. I can move about on my own again, however, my energy level is quite low. I started to do laps in my room, back and forth; I was not quite ready to join the other patients on the floor for the "Prime Time, Cat Walk Hallway". After much prodding and pushing from Alana though, I realized my Chemo Make-over was ready to display and was able to do 1 1/2 laps around the floor, not too shabby after not eating much for a week.
It is nice to have Alana in town to come by each day. We giggled through the "Basil the rat" episode of Fawlty Towers and then made a "Skype" shabbat with Stephen, my mom and the boys.
http://www.youtube.com/watch?v=VPP4P3gKGss
Enjoy this holiday weekend!
This post starts with a recap from a few days ago:
Day 7 of the chemo should end tomorrow afternoon. I managed to have some control over the nausea and was able to eat a bit yesterday and today - cream of wheat cereal never tasted so good!
Hospital time, days go into nights and days. The other night about 3AM all the lights went on in my room and a Fellow came in asking if I was "Brezinski" and I said "No, I am Katz-Downie." He apologized profusely for the room error and I told him it was fine, it is like camp here or life in University dorms.
Nurses. Nurses are really unique individuals, they work incredibly hard to make the patient comfortable and never complain. I have experienced excellent care and they are truly there at all times when I need them to help with the smallest task or question.
Food service. Great! I enjoyed a little chicken soup from Kohn's Kosher, made to order blueberries and crushed ice, and the always delicious Cream of Wheat!
Finished my chemo yesterday afternoon; getting unhooked from my IV pole was quite a nice surprise. I can move about on my own again, however, my energy level is quite low. I started to do laps in my room, back and forth; I was not quite ready to join the other patients on the floor for the "Prime Time, Cat Walk Hallway". After much prodding and pushing from Alana though, I realized my Chemo Make-over was ready to display and was able to do 1 1/2 laps around the floor, not too shabby after not eating much for a week.
It is nice to have Alana in town to come by each day. We giggled through the "Basil the rat" episode of Fawlty Towers and then made a "Skype" shabbat with Stephen, my mom and the boys.
http://www.youtube.com/watch?v=VPP4P3gKGss
Enjoy this holiday weekend!
Friday, July 1, 2011
Plerixafor, daunorubicin, and cytarabine ... oh my!
Dear Family and Friends,
Sorry for the delay in our postings. This past week was chemo week for Deborah. She began chemotherapy on Friday, June 24th and today, just a few moments ago, her IV was pulled, for her first session of chemo is now completed. Deborah had a tough week of it, with severe nausea the first several days. The past two days, however, have been great. Deborah can now roam the hallways of the hospital floor, have a shower, and take care of all the business she usually does!
For those of you interested, she was taking daunorubicin and cytarabine. Check out Wikipedia to learn what these drugs too. She is also participating in a clinical study of plerixafor.
Thanks to all of you who have helped us out so far. Joan and Nigel brought over two absolutely delicious dinners this week. The boys loved them! Kari and May helped with groceries, and some of our neighbors brought over delicious fruit baskets and baked goods. Your willingness to help us makes me so proud to live in our community and have friends like you all.
I kinda hope that now Deborah is up on her feet she will continue her regular postings. Mine, to be honest, are rather boring. ---Stephen
Sorry for the delay in our postings. This past week was chemo week for Deborah. She began chemotherapy on Friday, June 24th and today, just a few moments ago, her IV was pulled, for her first session of chemo is now completed. Deborah had a tough week of it, with severe nausea the first several days. The past two days, however, have been great. Deborah can now roam the hallways of the hospital floor, have a shower, and take care of all the business she usually does!
For those of you interested, she was taking daunorubicin and cytarabine. Check out Wikipedia to learn what these drugs too. She is also participating in a clinical study of plerixafor.
Thanks to all of you who have helped us out so far. Joan and Nigel brought over two absolutely delicious dinners this week. The boys loved them! Kari and May helped with groceries, and some of our neighbors brought over delicious fruit baskets and baked goods. Your willingness to help us makes me so proud to live in our community and have friends like you all.
I kinda hope that now Deborah is up on her feet she will continue her regular postings. Mine, to be honest, are rather boring. ---Stephen
Monday, June 27, 2011
Popsicles for Lunch and Dinner, with no spam!
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
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
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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