Friday, July 1 was my first actual treatment day. We are getting more and more comfortable with the folks at Burzynski's clinic, and I think getting fond of them too. As I think I wrote in yesterday's blog entry they are knowledgeable friendly, and not shy about going above and beyond the call of duty to answer your questions... hold the doors open for your wheelchair, or backup to go over information they have just explained so that they know you have it down pat.
This clinic is a busy place! Yesterday we were on the second floor which is where they train people to use equipment and change bandage dressings and such. There is a row of very comfortable looking recliners along the right wall, which filled up with users during the course of the day- all of them getting infusions of some type or another. In addition there was another couple that looked like they were the same stage of treatment as Lorraine and I. The wife was learning equipment and how to change dressings while the husband, unfortunately, looked to have the same exact impairments that I have. For some reason however he did not walk with a cane though he looked like he he needed one badly. Every time he had left his chair I was afraid he would fall on the floor.
They spent a good hour at the clinic during the course of yesterday's visit training Lorraine how to change the dressings on my port in my chest. In addition she learned how to program the pump to which I'm tethered now 24 hours a day. There was an absolute town of information to be learned during that first visit!! The training was "live" in that when they changed the dressing on my port, Lorraine was right there to take notes and learn the process. The same for the medicine portion: Lorraine was there to take notes and learn the process while they program the pump to push this medicine into me according to the doctors orders. In addition, she had to learn the process of getting the bags of liquid medicines prepared to use with the pump... And this really is a process!! As I said though, this was life training: when I left yesterday, the pump was working and pumping medicines into me already.
Some couples have to learn to sleep with a puppy between them or maybe a baby. We had to learn last night how to sleep with this pump between us, and how to run the tether tube from the pump to me in a fashion that would allow me to sleep- yes, me the insomniac!!
I survived though and actually slept well as one of the medicines as a tendency to make me drowsy. I hope I get used to it soon, because by 8 PM last night I was dead tired. Since it is absolutely critical for me to exercise, at least walk, every single day I worry about being too tired to do so.I do not feel as if exercise is any more optional for me than it ever was... I have been told that this type of brain tumor causes markers to be put in the blood which enable clotting, and that this is something we must watch out for diligently. There are only two defenses: regular exercise and watching out for signs of blood clots.
Therein lies my concern about being so tired by early evening. It is critical for me exercise and in order for me to walk safely with this cane I must to wide-awake, not dragging my feet. I am confident that as time goes on I will get used to this medicine so this will not be an issue. Last night was just my first time but there's certainly no way I could've walked much. In fact, I lay down and was asleep by 830!
We will revisit the clinic every single day. Today is Saturday, on July 4 holiday weekend- and today is no exception. 9:30 AM I will go in for fresh medicines and to have the dressing changed one more time. Lorraine will give further training and programming the pump and getting familiar with the medicines. There are two bags of medicine in the package with the pump; we're told they're very similar. I think it's the same medicine in both bags but one is a concentrate in the other is diluted. Whether pump switches to the concentrate, I become drowsy. This is the medicine which I need to be used to.
Our visit at Burzinski's clinic yesterday definitely showed us and taught us a lot. I look forward to seeing we have surprises they have for us today.
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1 comment:
Sounds like you are learning a lot and (FINALLY!) getting the care and treatment you need! The other patients and their spouses sound like they (if they/you are open to it) would be a great additional source of mutual support and friendship for you. Yeah, exercise is so important! and walking when you are are wide awake is key. Glad to hear you are able to get some sleep...sleep is so important for healing. I got this crazy pre-menopausal insomnia going on over here and can only imagine how you must feel! We need our sleep! I hope you are getting somewhat acclimated to the heat over there in Texas? It is definitely more intense heat there than San Diego that's for sure! Well, I'll be thinking all healing thoughts of ya and send you love as always!
xoxo
Chris
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