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!
Deborah's Daily
Tuesday, November 22, 2011
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.
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