Well, my
back pain hasn't been getting any better, and I'm struggling with trying to
maintain my everyday level of activity. We are tweaking the meds again,
based on a conversation with the pain dr on Friday, but during that appt, he
presented me with an option I had never really considered as an option until
now.
He asked me to open my mind to considering an internal pain pump. As you can imagine, I was shocked and scared that this is the next step we are looking at. It's overwhelming to think about.
The unit itself is from Medtronic. Here is a link to the information directly from the Medtronic website regarding what the pump is and how it works. Basically, it is a unit about, oh, say 2-ish inches around and about half an inch thick that weighs about 16 ounces or so (it was heavier than I thought) that sits just under the skin in the abdomen. Attached to that is a long tube (called a catheter) that the drs winds through the body and inserts into the intrathecal area of the spine (if I remember correctly, this is the same area they access when you have an epidural when you are having a baby).
Here's a picture.
Photo credits here and here
And, here's a picture of how it would potentially sit in my body.
Photo credit
I was really glad Levi was with me at this appointment - I don't know how I would have done if he hadn't been there to talk me through it all. After the appt, we sat down for breakfast and started formulating a list of questions that we needed to get answers to before we can make a decision. We also spoke with my parents to get their viewpoint and questions, and I did (as you can imagine) a bunch of research.
Today, I emailed a list of questions, probably 25 in all, to my care team, so that we can start to get a better picture of what this would really, truly entail.
On Friday, I was completely overwhelmed. I don't know why, but I saw this as an end-of-life decision, one that somehow puts me into a different group of survivorship. I can't really explain to you why I had these feelings, why I had such inexplicable fear about having this done. I guess, in my mind, I always figured that there would always be another option of pain medication, or that somehow, we'd stumble onto the cause of the pain and therefore just be able to eliminate it.
Having this device implanted is a huge step, and, in my mind, a final decision. I really can't explain it better than that. I think that this, combined with the news a few weeks ago about my tumors growing in size and number, just hit me all at once. It feels like I am somehow coming to the end, and I don't know why. I feel like we are running out of options for chemotherapy, for pain management....and what happens when we are completely out of options to control everything.
I die.
Maybe that's it. Maybe it's just that I see this as yet another "We are out of options so we'll try this to see if it helps" kind of discussion. That's a scary place to be.
So, I'll ask you all. Does anyone have experience with a pump of this kind? I'd love to hear all sides - positive, negative, people who chose to use it, people who chose NOT to use it. We want to hear all sides, so we can make an informed decision, and know that what we choose is the right decision.
Any help y'all can provide would be greatly appreciated.
He asked me to open my mind to considering an internal pain pump. As you can imagine, I was shocked and scared that this is the next step we are looking at. It's overwhelming to think about.
The unit itself is from Medtronic. Here is a link to the information directly from the Medtronic website regarding what the pump is and how it works. Basically, it is a unit about, oh, say 2-ish inches around and about half an inch thick that weighs about 16 ounces or so (it was heavier than I thought) that sits just under the skin in the abdomen. Attached to that is a long tube (called a catheter) that the drs winds through the body and inserts into the intrathecal area of the spine (if I remember correctly, this is the same area they access when you have an epidural when you are having a baby).
Here's a picture.
Photo credits here and here
And, here's a picture of how it would potentially sit in my body.
Photo credit
I was really glad Levi was with me at this appointment - I don't know how I would have done if he hadn't been there to talk me through it all. After the appt, we sat down for breakfast and started formulating a list of questions that we needed to get answers to before we can make a decision. We also spoke with my parents to get their viewpoint and questions, and I did (as you can imagine) a bunch of research.
Today, I emailed a list of questions, probably 25 in all, to my care team, so that we can start to get a better picture of what this would really, truly entail.
On Friday, I was completely overwhelmed. I don't know why, but I saw this as an end-of-life decision, one that somehow puts me into a different group of survivorship. I can't really explain to you why I had these feelings, why I had such inexplicable fear about having this done. I guess, in my mind, I always figured that there would always be another option of pain medication, or that somehow, we'd stumble onto the cause of the pain and therefore just be able to eliminate it.
Having this device implanted is a huge step, and, in my mind, a final decision. I really can't explain it better than that. I think that this, combined with the news a few weeks ago about my tumors growing in size and number, just hit me all at once. It feels like I am somehow coming to the end, and I don't know why. I feel like we are running out of options for chemotherapy, for pain management....and what happens when we are completely out of options to control everything.
I die.
Maybe that's it. Maybe it's just that I see this as yet another "We are out of options so we'll try this to see if it helps" kind of discussion. That's a scary place to be.
So, I'll ask you all. Does anyone have experience with a pump of this kind? I'd love to hear all sides - positive, negative, people who chose to use it, people who chose NOT to use it. We want to hear all sides, so we can make an informed decision, and know that what we choose is the right decision.
Any help y'all can provide would be greatly appreciated.
Comments:
Joan
B said...
I
don't have any experience and do not know anyone who does. But, because your
post just tugs at my heart I will say one thing. My philosophy on most thing is
whatever works for YOU. If this will make your life better, than that is a good
thing. I hope whatever decision you make is one that you feel good about. Hugs,
I think of you often
July
14, 2014 at 4:06 PM
I
have not had a pain pump either but am not sure I would want one. I dislike the
idea of having something implanted into me. Much worse than a port. The surgery
sounds fairly significant.
I have many pain issues and they are controlled by Butrans pain patches. Have you tried those? Have you heard of them? They are available in 3 levels 5 mcg/hr, 10 mcg/hr, and 20 mcg/hr and provide a stead dose of an opiate related drug. They are much less intrusive and last a week each. Maybe those might be an option instead of something so intrusive.
I have been reading your blog since the beginning and followed your story. Hugs to you at this point.
I have many pain issues and they are controlled by Butrans pain patches. Have you tried those? Have you heard of them? They are available in 3 levels 5 mcg/hr, 10 mcg/hr, and 20 mcg/hr and provide a stead dose of an opiate related drug. They are much less intrusive and last a week each. Maybe those might be an option instead of something so intrusive.
I have been reading your blog since the beginning and followed your story. Hugs to you at this point.
July
15, 2014 at 3:05 AM
Hi
Michelle! My name is Cameron Von St. James and I had a quick question for you
about raising awareness & was wondering if you could please email me when
you have a free moment. Thanks! I really hope to hear from you soon and
appreciate you taking the time. ☺ cvonstjames AT gmail DOT com
July
15, 2014 at 7:58 AM
That
looks kind of scary to me... I am not sure I would want that big of a thing
implanted in me and then running to my spine. What happens if the tube
dislodges from the place they put it? Surely there must be other pain options?
I have non stop back pain in the spine but I don't think I would jump on this
option, at least not yet...it is scary to me.
July
15, 2014 at 8:31 PM
I
think that if it could give you pain free time with your family, then it is
certainly worth considering. As for the weight of the device, you won't carry
it in your hand! Your care team wouldn't offer this as an option if they didn't
believe (not just hope!) that this would give you some relief.
July
16, 2014 at 4:45 AM
Shaundra Hall said...
Well
- I think that the pain pump is an amazing device and I do know several people
who have pain pumps for many different reasons - trauma, birth defects, illness
other than cancer. So please don't look at this as if it is an end stage only
option. Because the folks I know of are living good lives and have much better
QOL due to the pain pumps. Being in debilitating pain is exhausting. I'm
thankful there are devices such as this that offer direct relief without
chronic ingestion of copious amounts of narcodics. I've been on a cocktail of
narcodics and pain patches for nearly 15 years due to secondary complications
from my cancer. Right now I'm not a candidate for a pain pump, but if ever I
were, I wouldn't hesitate to take advantage of this amazing technology. xoxo
July
21, 2014 at 11:14 AM
In
a heartbeat I would do it. It will give you better time with your family.
July
24, 2014 at 5:05 PM
No comments:
Post a Comment