Took dinner over to Mary and the family this evening. She is looking good but tired. First round of treatment today and Mary is in good spirits. Though in Mary "style" she is not slowing down and talking about painting a basement floor!! There is a fire inside her and I am in awe of her and her strength. However, I think some of her motivation is her way of feeling "normal," too. She seems compelled to be doing something...anything for that matter. You cannot fault her for that....she is determined to kick this disease and gain some control..and I pray that she is successful.
She said that the medication is making her feel funny....almost as if she is "drunk" and she tried to explain that she feels like her body is twitching though it is not noticeable. She had anticipated feeling nauseous today but overall, it has not been bad. However, with round 2 on Wednesday she does not think she will be that lucky. Hopefully, it will go smoothly for her.
Will update with more news soon. Keep the prayers and well wishes coming!
Monday, January 17, 2011
Friday, January 14, 2011
Update from Ajay
Hi folks....please forgive my sending a group email...but all of you have inquired as to how Mary is doing so I thought I would shoot out a quick update to all of you...hope you don't mind.
Not a lot to report....she received her first infusion on Wednesday and dealt with it pretty well (little nauseous)....and does not start her regular regiment until Monday. She does have the "power line" (defined as catheter inserted into her chest, going directly to her superior vena (top of her heart). Wednesday was a little overwhelming for both of us as it is one thing to know you are beginning treatment, it is another to actually see a tube coming out of your chest and then being trained on the various nurse like procedures we will have to master (sterile dressing changes and drug administration). Think surgical masks, gloves, the whole bit...very serious deal, as an infection to the "site" could spread to her heart very quickly. That said, it is good to get her started finally...after such a long road of misdiagnoses, procedures, close calls, etc. Back to her treatment...on Monday she will begin her regimen of two IV antibiotics per day, on Mondays, Wednesdays and Fridays, plus 2 oral antibiotics every day, plus Lactate Ringers (saline) on her off days. Beginning the week after next week, they will step up her IV antibiotics to two kinds of medicines at a time, which is when she will likely start feeling really sick. The odd thing is that when she starts feeling really sick (called "herxing"), it means the spirochetes are being killed off, which is a good thing.....however it will make her feel like complete shit. So she has to hope she feels bad....so she can feel better!!
Her spirits are okay, though, she is tired. Thanks so much to all of you for your continued love and support for Mary....please don't hesitate to reach out to her, (phone is best as she does not check email often), as I am sure she would love to hear from you all.
Ajay
Not a lot to report....she received her first infusion on Wednesday and dealt with it pretty well (little nauseous)....and does not start her regular regiment until Monday. She does have the "power line" (defined as catheter inserted into her chest, going directly to her superior vena (top of her heart). Wednesday was a little overwhelming for both of us as it is one thing to know you are beginning treatment, it is another to actually see a tube coming out of your chest and then being trained on the various nurse like procedures we will have to master (sterile dressing changes and drug administration). Think surgical masks, gloves, the whole bit...very serious deal, as an infection to the "site" could spread to her heart very quickly. That said, it is good to get her started finally...after such a long road of misdiagnoses, procedures, close calls, etc. Back to her treatment...on Monday she will begin her regimen of two IV antibiotics per day, on Mondays, Wednesdays and Fridays, plus 2 oral antibiotics every day, plus Lactate Ringers (saline) on her off days. Beginning the week after next week, they will step up her IV antibiotics to two kinds of medicines at a time, which is when she will likely start feeling really sick. The odd thing is that when she starts feeling really sick (called "herxing"), it means the spirochetes are being killed off, which is a good thing.....however it will make her feel like complete shit. So she has to hope she feels bad....so she can feel better!!
Her spirits are okay, though, she is tired. Thanks so much to all of you for your continued love and support for Mary....please don't hesitate to reach out to her, (phone is best as she does not check email often), as I am sure she would love to hear from you all.
Ajay
Wednesday, January 12, 2011
News From Ajay.
Ajay e-mailed...it is about 3.25 p.m. and Mary is doing okay. He writes- "First infusion and training complete. All is well..we are under way with treatment...this is going to be a long road...."
PLEASE send prayers and positive thoughts her way.
PLEASE send prayers and positive thoughts her way.
Successful implant
Heard from Ajay around 11:15. He sent me the following message - Successful implant of
Catheter port...she is out of recovery and we are now enroute Jemsek clinic for training and first infusion.....All is well....she is groggy and likely will be a bit out of it until this evening...updates to follow
Catheter port...she is out of recovery and we are now enroute Jemsek clinic for training and first infusion.....All is well....she is groggy and likely will be a bit out of it until this evening...updates to follow
Wednesday
Mary's procedure was first thing this a.m. Waiting for an update from Ajay. Both he and Mary went to D.C. last night to avoid any snow issues. Sending lots of prayers to Mary. Love you.
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