So, it's
been a while since I've updated. I have good reason. I promise.
This post will likely be long and rambling, so I understand if you don't
want to read it. But, for those of you interested, here we go.
The last post was anticipating the second of this round of chemos, and we went ahead with it after another shot with the Neupogen due to low blood counts. Not a big deal, especially since the Neupogen works wonders in a short period of time for me and bumped my counts in less than 24 hours!
We went in for this round of chemo feeling stronger and confident - my body was getting stronger and stronger each day, and I was feeling more confident, since (in a single round of chemo) my CEA had dropped to 5.4. Crazy, right???
So, as I said, we went up for chemo feeling pretty good.....well, as good as you can feel knowing you're going to feel like crap soon. But, it's easier to go in knowing that the chemo is working. I got my pre-meds, my Avastin, and was about 15 minutes into my Oxalipalantin when I started feeling odd. Shortness of breath and rapid heartbeat were the first two things I noticed. I immediately called over the nurse, and kind of went downhill from there. I got really hot, then started sweating (like, gross, nasty, sweat rolling down your back and face sweating), then got super cold. I started having some pretty severe back spasms. I remember them calling the Rapid Response Team, having the crash cart come over, lots of nurses and doctors coming over to join to reaction party.....it wasn't fun. I can't give you many more specifics because I was so focused on a) trying to make it through each back spasm without keeling over, and b) trying not to throw up.
After a while, the symptoms seemed to ease and I had to go bathroom. Normally, this wouldn't warrant talking about in my blog because, well.....anyways, I went in, did my thing, and it was red. Like, my urine was bright red. And, at that point, I knew things weren't over yet.
We called nurses over again, and needless to say, I was admitted to CTCA. The next time I went to the bathroom, my urine was dark red, almost brown, and I knew we were in for a new experience. After getting settled into my room, and after everyone went home, I got a bit of sleep.
Until 2am, when a doctor came in and told me that I had HUS, which is a syndrome I had never heard of and honestly still don't know a lot about, so here's a link if you're interested in reading more about it. At that point, the only thing I was concerned about was that I was told that, because of what they had found, I had hours if I didn't get to a place that could treat me. We talked about which hospital to take me to, made a decision, I called Levi, and about 30 minutes later, we were both in an ambulance on our way to St. Joseph's Hospital in Phoenix.
The rest of this story is going to be fairly short and to the point, for a number of reasons. When you're not at a place like CTCA, doctors often don't think to involve a patient in the conversations about their treatment, so much of what I heard and learned was only after I came out of ICU and was conscious enough to ask.
I was admitted right into the ICU, where the doctors looked at my case. They disagreed with what CTCA had said, and did more tests. I remember having a peripheral IV put in my right arm (the scar is still there). I remember being scared out of my mind. I remember thinking, I don't belong in the ICU.
Once there, my kidneys shut down. They weren't producing any urine. Combine this with the fact that standard protocol at a hospital is to pump you with fluids....yeah. I gained almost 60 pounds at one point, just in water weight. In like a 4 day period. Can you say OUCH? Because I did - a lot. When your body isn't cleaning out the fluids, and you are being pumped full of more of them, there's no place for it to go but on your body. My poor fingers and toes were like sausages. At one point, my scalp even hurt from the extra water weight.
In the ICU, they fitted me with a temporary dialysis catheter in my neck. In typical Michelle fashion, I vividly remember asking if it was going to interfere with my tattoo. :) The catheter was used for two things - dialysis, and a procedure called plasmapheresis (like with more info here). I had both procedures done daily for about a week, and then every other day for a week. Each procedure is tiring and lengthy (about 3-4 hours), but they don't hurt.
I don't remember much from my time in ICU. I remember being scared. I remember being frustrated that it was so loud, and that I couldn't tell day from night because I had no window. I remember them trying to put a bladder catheter in, and it taking 8 tried before it worked (you can squirm in discomfort...it wasn't pleasant). I remember there being some really good nurses on staff there, who helped not only me, but my family.
The day before my birthday on the 21st, I was finally moved to a "normal" hospital room. It was so nice - it had a window. No view, but I didn't care. I could finally tell day from night. The night nurse decorated my room for my birthday that morning, which was super sweet, because I was pretty bummed about being in the hospital for my birthday.
The next couple of days were spent trying to rest, going to and from the procedures, and talking with the doctors, who were still trying to figure out what the heck was going on with me.
I was finally released on Saturday, the 29th, and I have never been so grateful for anything. The treatment at St. Joe's was pretty good - the food....not so much. But, since that's all I can complain about, I'll leave it at that.
The two weeks I was in the hospital was rough on my family. I'll leave it at that. I'm grateful to the many people who helped us out, and are continuing to help us out....it's made all the difference. I'm grateful that my family and a few friends were able to come visit me - the visits from my kids made my day. They wore me out, but pushed me to rest and to get better that much quicker.
The good news is that my kidneys finally started working again, and so far, seem to be on the mend. We still don't know what exactly happened. At my doctor's appt last week with Dr. K's team, they seem to feel it may have all been a reaction to the Avastin. We will talk about this more at this next appointment on Thursday.
All I know is that I'm glad I'm out of the hospital. I'm frustrated with my lack of strength and stamina - apparently, going through something like this is hard on your body, and it can take a while before you bounce back. And, you all know me - I'm not patient for things like that. So, I may be pushing myself a bit, but I'm also listening to my body and taking it easy.
It's been just over a week since I've been out of the hospital, and each day is a little better. My mental state is better, now that I know that we have other treatment options available to us (I was concerned that we had eliminated Oxalipalantin from the potential treatments). Levi and I have had some heart-to-hearts about some things, and that has helped us both.
I know there is so much more to tell about my time in the hospital, but in trying to take it easy, I'm going to end here. We are okay, and getting better each day. I'm home with my family and trying to just spend time with them. Friends - if you've emailed/called and I haven't responded, please don't feel offended or put off. I'm simply trying to put what energy I have into my family right now, and I hope you can understand that.
Meantime, know how much I adore you all, and appreciate you're support. We still have a long road ahead of us - this was simply a fairly big road block. But, we made it through, and are on the other side.
More later....
The last post was anticipating the second of this round of chemos, and we went ahead with it after another shot with the Neupogen due to low blood counts. Not a big deal, especially since the Neupogen works wonders in a short period of time for me and bumped my counts in less than 24 hours!
We went in for this round of chemo feeling stronger and confident - my body was getting stronger and stronger each day, and I was feeling more confident, since (in a single round of chemo) my CEA had dropped to 5.4. Crazy, right???
So, as I said, we went up for chemo feeling pretty good.....well, as good as you can feel knowing you're going to feel like crap soon. But, it's easier to go in knowing that the chemo is working. I got my pre-meds, my Avastin, and was about 15 minutes into my Oxalipalantin when I started feeling odd. Shortness of breath and rapid heartbeat were the first two things I noticed. I immediately called over the nurse, and kind of went downhill from there. I got really hot, then started sweating (like, gross, nasty, sweat rolling down your back and face sweating), then got super cold. I started having some pretty severe back spasms. I remember them calling the Rapid Response Team, having the crash cart come over, lots of nurses and doctors coming over to join to reaction party.....it wasn't fun. I can't give you many more specifics because I was so focused on a) trying to make it through each back spasm without keeling over, and b) trying not to throw up.
After a while, the symptoms seemed to ease and I had to go bathroom. Normally, this wouldn't warrant talking about in my blog because, well.....anyways, I went in, did my thing, and it was red. Like, my urine was bright red. And, at that point, I knew things weren't over yet.
We called nurses over again, and needless to say, I was admitted to CTCA. The next time I went to the bathroom, my urine was dark red, almost brown, and I knew we were in for a new experience. After getting settled into my room, and after everyone went home, I got a bit of sleep.
Until 2am, when a doctor came in and told me that I had HUS, which is a syndrome I had never heard of and honestly still don't know a lot about, so here's a link if you're interested in reading more about it. At that point, the only thing I was concerned about was that I was told that, because of what they had found, I had hours if I didn't get to a place that could treat me. We talked about which hospital to take me to, made a decision, I called Levi, and about 30 minutes later, we were both in an ambulance on our way to St. Joseph's Hospital in Phoenix.
The rest of this story is going to be fairly short and to the point, for a number of reasons. When you're not at a place like CTCA, doctors often don't think to involve a patient in the conversations about their treatment, so much of what I heard and learned was only after I came out of ICU and was conscious enough to ask.
I was admitted right into the ICU, where the doctors looked at my case. They disagreed with what CTCA had said, and did more tests. I remember having a peripheral IV put in my right arm (the scar is still there). I remember being scared out of my mind. I remember thinking, I don't belong in the ICU.
Once there, my kidneys shut down. They weren't producing any urine. Combine this with the fact that standard protocol at a hospital is to pump you with fluids....yeah. I gained almost 60 pounds at one point, just in water weight. In like a 4 day period. Can you say OUCH? Because I did - a lot. When your body isn't cleaning out the fluids, and you are being pumped full of more of them, there's no place for it to go but on your body. My poor fingers and toes were like sausages. At one point, my scalp even hurt from the extra water weight.
In the ICU, they fitted me with a temporary dialysis catheter in my neck. In typical Michelle fashion, I vividly remember asking if it was going to interfere with my tattoo. :) The catheter was used for two things - dialysis, and a procedure called plasmapheresis (like with more info here). I had both procedures done daily for about a week, and then every other day for a week. Each procedure is tiring and lengthy (about 3-4 hours), but they don't hurt.
I don't remember much from my time in ICU. I remember being scared. I remember being frustrated that it was so loud, and that I couldn't tell day from night because I had no window. I remember them trying to put a bladder catheter in, and it taking 8 tried before it worked (you can squirm in discomfort...it wasn't pleasant). I remember there being some really good nurses on staff there, who helped not only me, but my family.
The day before my birthday on the 21st, I was finally moved to a "normal" hospital room. It was so nice - it had a window. No view, but I didn't care. I could finally tell day from night. The night nurse decorated my room for my birthday that morning, which was super sweet, because I was pretty bummed about being in the hospital for my birthday.
The next couple of days were spent trying to rest, going to and from the procedures, and talking with the doctors, who were still trying to figure out what the heck was going on with me.
I was finally released on Saturday, the 29th, and I have never been so grateful for anything. The treatment at St. Joe's was pretty good - the food....not so much. But, since that's all I can complain about, I'll leave it at that.
The two weeks I was in the hospital was rough on my family. I'll leave it at that. I'm grateful to the many people who helped us out, and are continuing to help us out....it's made all the difference. I'm grateful that my family and a few friends were able to come visit me - the visits from my kids made my day. They wore me out, but pushed me to rest and to get better that much quicker.
The good news is that my kidneys finally started working again, and so far, seem to be on the mend. We still don't know what exactly happened. At my doctor's appt last week with Dr. K's team, they seem to feel it may have all been a reaction to the Avastin. We will talk about this more at this next appointment on Thursday.
All I know is that I'm glad I'm out of the hospital. I'm frustrated with my lack of strength and stamina - apparently, going through something like this is hard on your body, and it can take a while before you bounce back. And, you all know me - I'm not patient for things like that. So, I may be pushing myself a bit, but I'm also listening to my body and taking it easy.
It's been just over a week since I've been out of the hospital, and each day is a little better. My mental state is better, now that I know that we have other treatment options available to us (I was concerned that we had eliminated Oxalipalantin from the potential treatments). Levi and I have had some heart-to-hearts about some things, and that has helped us both.
I know there is so much more to tell about my time in the hospital, but in trying to take it easy, I'm going to end here. We are okay, and getting better each day. I'm home with my family and trying to just spend time with them. Friends - if you've emailed/called and I haven't responded, please don't feel offended or put off. I'm simply trying to put what energy I have into my family right now, and I hope you can understand that.
Meantime, know how much I adore you all, and appreciate you're support. We still have a long road ahead of us - this was simply a fairly big road block. But, we made it through, and are on the other side.
More later....
Comments:
Joan
Bardee said...
I
am so very sorry. I was hoping the silence was because your life was boringly
good and you had nothing to report. Hope the next few weeks are a thousand
times better.
July
8, 2013 at 10:45 PM
I
am so thankful you're on the mend! I was SO worried!
July
9, 2013 at 6:58 AM
Oh
Michelle....I was wondering why I hadn't seen you in quite a while. I am so
glad you are on the mend but am so sorry to hear what you have been going
through. If there is ever anything my Mom or I can do for you, please let us
know. 602-973-5674 or 602-743-3126. We love you girly!
Laura and Henrietta
Laura and Henrietta
July
9, 2013 at 12:01 PM
Love
ya Michelle for being you! Rest, relax, and rejuvenate yourself for this next
phase.
Family always comes first :)
Family always comes first :)
July
15, 2013 at 9:04 AM
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