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!
Deborah's Daily
Friday, July 29, 2011
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
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